Grandparenting Children with Disabilities [1st ed.] 9783030390549, 9783030390556

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Madonna Harrington Meyer Ynesse Abdul-Malak

Grandparenting Children with Disabilities

Grandparenting Children with Disabilities

Madonna Harrington Meyer • Ynesse Abdul-Malak

Grandparenting Children with Disabilities

Madonna Harrington Meyer Department of Sociology Syracuse University Syracuse, NY, USA

Ynesse Abdul-Malak Colgate University Hamilton, NY, USA

ISBN 978-3-030-39054-9 ISBN 978-3-030-39055-6 https://doi.org/10.1007/978-3-030-39055-6

(eBook)

© Springer Nature Switzerland AG 2020 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

When he gets to laughing, that is the sweetest sound to me in the whole wide world. And we will laugh sometimes for an hour, and I sometimes don’t even remember what we’re laughing at. We don’t go out as much because we live in an apartment building and we have stairs, and because there’s no ramps and that apartment complex doesn’t want to put in ramps, and because we can’t afford to put in ramps. . .But, it’s his equipment is really heavy, and I have to be the one to carry his equipment down the steps . . .They’re very heavy and I just can’t do it by myself. Connie, age 57, and Andy, age two and one-half, who has cerebral palsy

For Ellen, Maureen, Sam, Tyreke, and Jeff MHM For Leila, Ziad, and Sami YAM

Acknowledgements

We are enormously grateful to each of the 50 grandparents who took time out of their very busy lives to complete interviews with us. They are an especially varied group united by a steely determination to try to provide the best care possible for their grandchildren with disabilities, whatever the impact on their own wellbeing. We are enormously grateful for vital support of graduate students provided by the Syracuse University Aging Studies Institute and the Center for Policy Research. We are especially grateful to Dalton Stevens for assistance with interviewing and editing. Our thanks to Scott Landes, Pamela Herd, Jennifer Dennison Brooks, and Brian Grossman for key editorial comments. We are grateful to Amra Kandic and Maura Harrington for editing and to Tara Slater and Janet Coria for assistance with charts, references, and editing. Special thanks to Kelly, Nicky, and Renee for feedback on the entire manuscript. We are grateful to everyone at Springer for their assistance. I am grateful to my husband and children, who are pressed into service for every book during editing: Jeff, Ellen, Maureen, and Sam. It is their own fault. If they were not so good at it, I would not keep asking! I am eternally grateful to my sister, Nerlie, and my brothers, Michelaire and Emmanuel, for their continued love and support.

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Contents

1

Grandparenting Children with Disabilities . . . . . . . . . . . . . . . . . . Grandparenting Children with Disabilities . . . . . . . . . . . . . . . . . . . . . Talking About, and Responding to, Childhood Disabilities . . . . . . . . Overview of Book . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Grandparenting Children with Disabilities . . . . . . . . . . . . . . . . . . . . .

. . . . .

1 2 12 17 21

2

Cumulative Inequality and the Welfare State . . . . . . . . . . . . . . . . . Theoretical Frameworks: Cumulative Inequality from a Life course Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Understanding Increasing Reliance on Grandparents . . . . . . . . . . . . . . Poverty-Based Social Welfare Programs . . . . . . . . . . . . . . . . . . . . . . . Supplemental Security Income (SSI) . . . . . . . . . . . . . . . . . . . . . . . Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Supplemental Nutrition Assistance Program (SNAP) . . . . . . . . . . . . Temporary Assistance to Needy Families (TANF) . . . . . . . . . . . . . Lack of Federal Benefit Guarantees for Working Families . . . . . . . . . . Paid Vacation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Paid Sick Leave . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Paid Parental Leave . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Flexible Work Schedules . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Affordable Child Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Methods and Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Cumulative Inequality and the Welfare State . . . . . . . . . . . . . . . . . . . .

27

Part I 3

27 30 31 31 32 35 36 36 36 37 37 38 38 39 43

Caring for Grandchildren with Disabilities

Love, Laughter, and Special Relationships . . . . . . . . . . . . . . . . . . . Rewards of Grandparenting Children with Disabilities . . . . . . . . . . . . . Love and Laughter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

49 49 50

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Contents

Special Relationships with Grandmothers . . . . . . . . . . . . . . . . . . . . . . Special Relationships with Grandfathers . . . . . . . . . . . . . . . . . . . . . . . Love, Laughter, and Special Relationships . . . . . . . . . . . . . . . . . . . . .

54 59 62

4

Diagnosing Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Difficulties with Diagnosing Disabilities . . . . . . . . . . . . . . . . . . . . . . Original Diagnoses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Ongoing Diagnoses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . “Why Me?” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Diagnosing Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

65 65 67 76 79 83

5

Moderately Intensive Grandparenting . . . . . . . . . . . . . . . . . . . . . . . 85 Moderately and Extremely Intensive Grandparenting . . . . . . . . . . . . . . 86 Occasional Care Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87 Regularly Scheduled Care Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 Around-the-Clock Care Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100 Moderately Intensive Grandparenting . . . . . . . . . . . . . . . . . . . . . . . . . 109

6

Extremely Intensive Grandparenting . . . . . . . . . . . . . . . . . . . . . . Intensive Supervision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Intensive Medical Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Extremely Intensive Grandparenting . . . . . . . . . . . . . . . . . . . . . . . . .

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111 112 119 129

7

Taking Custody . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Difficulties of Taking Custody . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Becoming De Facto Guardians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Becoming Legal Guardians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Relinquishing Guardianship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Taking Custody . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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131 132 133 134 142 145

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Financial Contributions and Considerations . . . . . . . . . . . . . . . . . The Costs of Financial Contributions . . . . . . . . . . . . . . . . . . . . . . . . Spending Relatively Little . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Setting Financial Limits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Shouldering Much of the Financial Burden . . . . . . . . . . . . . . . . . . . . Financial Contributions and Considerations . . . . . . . . . . . . . . . . . . .

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147 148 149 153 155 162

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Managing Adult Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Challenges of Managing Adult Children . . . . . . . . . . . . . . . . . . Managing Similar Parenting Styles . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Conflicting Parenting Styles . . . . . . . . . . . . . . . . . . . . . . . Coping with Sibling Rivalry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Adult Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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165 165 166 172 183 187

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Never Ending Care Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189 The Challenges of Never Ending Care Work . . . . . . . . . . . . . . . . . . . . 189 Caring for Siblings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191

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Contents

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Sandwich Generation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Future Care for Grandchildren with Disabilities . . . . . . . . . . . . . . . . . . 198 Never Ending Care Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 210 11

Managing Views on Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Others’ Views on Disabilities . . . . . . . . . . . . . . . . . . . . . . Positive Views . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Negative Views . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Educational Responses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Views on Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Part II

. . . . . .

213 213 214 215 221 224

Impact on Grandparents

12

Rethinking Work and Retirement . . . . . . . . . . . . . . . . . . . . . . . . . Impact of Care Work on Grandparent Employment and Retirement . . Changing Work Schedules to Provide Care . . . . . . . . . . . . . . . . . . . . Keeping Paid Work to Minimize Care Work . . . . . . . . . . . . . . . . . . . Leaving Work to Provide Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Rethinking Work and Retirement . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . .

227 227 228 234 235 238

13

Redefining Social Lives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Impact of Care Work on Grandparent Social Lives . . . . . . . . . . . . . . Little Impact on Social Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Redefining Family as Social Life . . . . . . . . . . . . . . . . . . . . . . . . . . . Forfeiting Social Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Redefining Social Lives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . .

241 241 242 246 251 259

14

Emotional Ups and Downs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Impact of Care Work on Grandparent Emotional Wellbeing . . . . . . . . Positive Emotional Impacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Feeling Appreciated . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Negative Emotional Impacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Feeling Unappreciated . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Emotional Ups and Downs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . .

261 261 263 265 270 279 283

15

Physical Wellbeing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Impact of Care Work on Grandparent Physical Health . . . . . . . . . . . . Positive Health Impacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Negative Health Impacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Physical Wellbeing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . .

285 285 287 290 300

16

How Policy and Place Matter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Place and Policy Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Easier Access to In-Person and On-Line Support Groups . . . . . . . . . . . Better Support Through Early Intervention and Special Education . . . . Enriching Social Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Comprehensive Medical and Respite Care . . . . . . . . . . . . . . . . . . . . . Stable Access to Social Welfare Programs . . . . . . . . . . . . . . . . . . . . .

303 305 307 311 316 320 321

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Contents

SSI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SNAP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . TANF . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Coping with Administrative Burden . . . . . . . . . . . . . . . . . . . . . . . How Place and Policy Matter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . .

322 323 323 324 324 328

Appendix A: Respondent and Grandchild Aliases, Sociodemographics, and Diagnoses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 333 Appendix B: Grandparent Sociodemographic Information . . . . . . . . . . 337 Appendix C: Interview Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339 Appendix D: Descriptions of Diagnoses . . . . . . . . . . . . . . . . . . . . . . . . . 345 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353

Chapter 1

Grandparenting Children with Disabilities

Amber Tatro was born with spina bifida and went on to win a 1984 Supreme Court case. Amber had partial paralysis, impaired speech, and difficulty urinating on her own.1 Her family notified the Irving Independent School District that she would begin kindergarten in the fall, and would need catheterization every few hours to prevent kidney damage. The school took an individualistic approach to disabilities, arguing that catheterization was medical care that fell outside federal mandates and that accommodations for Amber’s disabilities were the responsibility of Amber and her family. Amber and her family sued and her case moved to the Supreme Court. By unanimous decision, the justices ruled that catheterization fell within the related services the school district was federally required to provide. The Supreme Court took a social approach to disabilities, arguing that the accommodations she needed were the responsibility of society at large. Amber’s suit is well known as a pivotal case that set precedence for mandating access to public schools for children with disabilities. Less well known is that Amber was adopted and raised by her grandparents. In fact, across the US, millions of grandparents are quietly, almost invisibly, providing vital care for their grandchildren with disabilities. Childhood disability rates have risen steadily but neither the US welfare state nor employers have expanded benefits for working families accordingly.2 Families are increasingly relying on grandparents to care for grandchildren with disabilities. Some, like Amber’s, have custody. Others live coresidentially. Most simply live nearby, or at least near enough, and provide a wide range of intensive care, including assisting their grandchildren with feeding, bathing, dressing, medicating, driving, and homework. Grandparents often take grandchildren with disabilities to the park or the zoo, but also to school, therapy, and the doctor. Many advocate, and a few, including Amber’s grandparents, hire lawyers. In this book, we describe the wide array of care work that grandparents perform for their grandchildren with disabilities, and then assess the impact on grandparent financial, work and retirement, social, emotional, and physical wellbeing.

© Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_1

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1 Grandparenting Children with Disabilities

Grandparenting Children with Disabilities Grandparenting is intensifying for many U.S. families and this may be particularly true for families with children who have disabilities.3 Grandparents in the U.S. often provide more care than grandparents in many other countries, more care than U.S. grandparents used to provide in previous decades, and more care than they expect to provide.4 The intensification of grandparent care is linked to key features of the U.S. welfare state. As we show in Chapter 2, the U.S. does not provide federal policies that help families juggle work and childcare and this may be especially true when children need additional supports.5 Igel and Szydlik (2011) found that in countries where an abundance of policies help young families balance paid work and child care, grandparents provide less grandchild care. But in countries with few or no such policies, grandparents provide more grandchild care. Indeed, many US grandparents, and particularly those whose grandchildren have disabilities, find that their grandparenting roles are converging with parenting roles as they increasingly provide more frequent and more intense assistance and support.6 Some US grandparents provide a great deal of grandchild care. One-half of Americans ages 50–64, and 80% of those 65 and older, are grandparents.7 Each week, 50% of young children, 35% of elementary-age children, and 20% of teens spend at least some time with their grandparents.8 US Census data shows that the percent of children under five years of age living with mothers who were in the labor force who received childcare from grandparents rose from 14% in 1988 to 21% in 2011.9 Fully 50% of U.S. grandparents provide financial assistance to their adult children and grandchildren, and 31% help with errands, housework, and home repairs.10 One longitudinal study found that 60% of grandparents care for grandchildren for ten or more years, and 70% do so for two or more years.11 Grandparents are often highly coveted sources of grandchild care because they tend to be more flexible, lower cost, and reliable.12 Grandparents are generally much more flexible than organized daycare in that they are able and willing to rearrange their schedules to care for grandchildren before school, after school, evenings, weekends, national holidays, snow days, and sick days.13 They often provide care for free or at very low cost. Moreover, they often share parenting styles and family values with their adult children.14 Who cares for children with disabilities is particularly important because studies show that they are more likely to suffer physical, sexual, and emotional abuse as well as types of neglect that adversely affect wellbeing across the life course.15 Adult children often regard grandparents as the most capable and trustworthy source of child care.16 For some, though certainly not all, grandparenting is a highlight.17 PEW asked people to rank what they valued most about growing older, and 31% of the women and 19% of the men ages 65–74 ranked spending time with their grandchildren first.18 Many grandparents express joy in having and caring for their grandchildren.19 But not all grandparents are actively engaged.20 Some grandparents are much less involved due to such factors as stressful family relationships,

Grandparenting Children with Disabilities

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complicated family trees, lack of proximity, limited time, insufficient money, poor health, or lack of interest.21 Even among grandparents who live in the same neighborhood as their grandchildren, roughly one-half do not provide any grandchild care.22 Though many readily embrace grandparenting, it is not for everyone. For this book our question centers on which grandparents provide what types of care for grandchildren with disabilities and how does that affect grandparent wellbeing. Studies show that grandparents tend to be more involved in caring for grandchildren with disabilities when they are women, matrilineal grandparents, living in closer proximity, have a good relationship with the parents, and hold a clear understanding of the disabilities.23 Generally, grandparents who are caring for grandchildren with disabilities provide a wide range of supports including assistance with childcare, medical care and therapies, housekeeping, school work, financial needs, chores, transportation, and errands.24 The impact of caring for grandchildren with disabilities on grandparent wellbeing is decidedly mixed. Studies show that impacts on financial, work and retirement, social, emotional and physical wellbeing may be mostly positive for those with sufficiently high incomes, relatively light care demands, and good health, and mostly negative for those with lower incomes, more intense care demands, and poorer health.25 To increase our understanding of the types of care grandparents provide when their grandchildren have disabilities, and the impact of that care on grandparent wellbeing, we interviewed 50 grandparents who are caring for grandchildren with disabilities. We find a wide variety of experiences and an even wider variety of implications. The grandchildren our respondents care for have many types of disabilities, including autism, Down syndrome, ADHD, cerebral palsy, and Williams syndrome. Their grandchildren vary markedly by the severity of disabilities, hence some need a lot more and others a lot less assistance from their grandparents. Regardless of how intense it is, however, like other scholars we find that care work, particularly when performed for grandchildren, may be very rewarding.26 Challenges and heartaches are often accompanied by many accomplishments and delights. We find a great deal of love and laughter in these close relationships. When we interviewed Mary, for example, she told us that the value of her close relationship with her granddaughter is immeasurable. Mary is a 63 year-old white mother of two and grandmother of three, who attended some college and works parttime. Four days a week she provides childcare for her youngest, Alice, who is four and has been diagnosed with Williams syndrome, autism, and ADHD. Given that her own mother never took care of Mary’s children, Mary never expected she and her husband would be caring for Alice four days a week. Nor did she expect to provide so much care for Alice’s sister. But Mary has become involved in all aspects of Alice’s care. In addition to providing routine daily care, she arranges medical, therapeutic, and educational services. She provides so much care that at times she feels more maternal than grandmotherly. Sometimes it is hard to differentiate; she is not my child but my daughter’s child. It is hard, and hard on my daughter. She is coming apart but she can’t. They depend on her.

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1 Grandparenting Children with Disabilities

Mary and her husband are grateful that they can provide so much assistance and feel blessed that they get to care for Alice. Caring for Alice is a great opportunity for us. We have this wonderful relationship with this beautiful child. We are blessed. She comes over to hug. She asks, “Rub my back?” There is more good things than bad things. The relationship is priceless. We did not think we would be doing this, but day by day, I know what I have to do today. God give me the strength to get through this.

Many grandparents struggle with the realities, and processes, of diagnosing. Like other scholars, we find that diagnoses are complex, on-going, and often fraught with emotional reactions by both medical professionals and family members.27 While some families readily obtain proactive diagnoses and treatments, others find it difficult to obtain accurate and comprehensive diagnoses, thus much needed treatments are often delayed. Diagnosing of Mary’s granddaughter was impeded in part by tension within the family; the paternal grandparents decided that the parents were incompetent. Mary says that until six months, Alice’s development was on track. But then after six months she began to fall behind in development of speech and motor skills. The paternal grandparents developed animosity toward Mary and her husband, and blamed their son and Mary’s daughter for Alice’s slowed development. There was a big thing in the beginning. There is a lot of animosity toward me because I have more contact. And they thought that my daughter and their son did not know what they were doing. Alice had failure to thrive. They thought the problem is that the parents did not know what they were doing. I knew something was wrong and I did not know what. I thought maybe autism. I did not know what. I kept saying something is wrong. She was too quiet. And too small. Alice was doing great until six months. She could sit at six months and stand up independently and roll over at six months. After six months old it all stopped. And the talking was not coming. No chattering. She did not look at you when you called her name. She did not point for things that she wanted.

It took more than a year for doctors to diagnose Alice’s Williams syndrome, and longer to detect autism and ADHD. After doctors confirmed that Alice had disabilities, the paternal grandparents rejected the diagnoses and severed their relationship with Alice and the rest of the family. The paternal grandparents were embracing a form of ableism, or discrimination against people with disabilities by rejecting Alice’s disabilities.28 Mistreatment of people with disabilities ranges from name calling and denying employment to dismissing symptoms and delaying treatment.29 The uncertainty was difficult for the entire family and delayed many needed diagnostic tests and therapies. Alice is very friendly like most Williams kids. . . Williams is physical and cognitive. Physically she is moderate but cognitively she is more severe. She has escaped the heart problems, so far, but she has other significant problems. She has the hypercalcemia. By the time we found out she had Williams she was 21 months old and so they started doing medical tests and her calcium levels were sky high, she has quite a bit of calcium in her kidneys.

Now the paternal grandparents provide no physical care; Alice’s parents rely mainly on Mary for assistance managing an enormous team of health care professionals and treatments, educational experts and treatments, and constant care for Alice.

Grandparenting Children with Disabilities

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She is under the care of about 1000 doctors, a nephrologist does routine ultrasounds. Developmentally she is more like one and one-half to two years old, and she is four and one-half. She walks and talks, the speech was very delayed, however now she goes to a special school for speech. We understand what she is saying. She sings a lot of her stuff, so we understand. She repeats over and over again. “Hi how are you, it’s nice to see you. . .” over and over when it is not appropriate. That is part of Williams.

The entire process of diagnosing took an enormous emotional toll on Mary and her daughter. Throughout these four years, both have faced depression. The diagnoses, the level of medical and therapeutic care, and the time and money devoted to providing care, has proven overwhelming at times and led both to bouts of tears. It’s hard. I started taking anti-depressants when she got diagnosed. I think it was devastating when we got the diagnosis. I could not stop crying. There is a shock value you go through. I wanted to do all I could. My husband and I are both committed to doing as much as we can. For me to be the best I can, being on the anti-depressants would help me. The first year was really hard on me and my daughter. My daughter no longer cries every day but she does every other day. Very emotional.

Historically grandparent and parent roles were very divergent. Grandparents let kids have ice cream before dinner while parents minded their manners during dinner. But the roles are converging for many grandparents. Just as parenting has become more intensive, studies note that grandparenting has become more intensive as well, particularly when grandchildren have disabilities.30 While some of the grandparents we interviewed were providing moderately intensive care, including intermittent help with meals, homework, medicines, therapies, transportation, and excursions, others were providing constant supervision or extremely intensive medical care such as assisting with feeding tubes, oxygen tanks, and sophisticated medical equipment. Many felt that they were doing far too much parenting and not getting to enjoy enough grandparenting. If they were not so busy helping with math homework or medications, they might be able to spend more time at the park. Like many grandparents we interviewed, Mary drives a long way to provide intensive and constant supervision and care for her granddaughter. On Monday, Tuesday and Wednesday, Mary drives 45 minutes from her home to her daughter’s house to get Alice, then drives her another 45 minutes to drop her at school. Then she picks her up at 2 pm and takes care of her for several hours after school. On Thursdays, Mary watches Alice for the afternoon and emphasizes therapeutic play to facilitate development. I take her to my house and then to her PT, and we have music therapy in the afternoon for her. If she has any doctor appointments I take her to those too. Sometimes for special things I will have her on the weekends. I have not had her overnight. I have her older sister a lot overnight.

When caring for Alice and her sister, Mary’s days begin early and end late. The schedules are constantly changing and the duties are numerous. It is constantly evolving. Right now, I get up at 6 am and I’m on the road to meet Alice and her mom and take Alice to school. Then five hours later I pick her up. In between I might go home or to my daughter’s. . . and clean the house. After I get Alice we go pick up her sister from school and then their dad picks them up. On Thursday, I often give Alice breakfast, get her ready for therapy, take her to therapy, give her lunch, we play. Then the music therapist comes, then her sister comes.

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Mary and her daughter accompany each other for doctor visits with Alice because they are particularly challenging. While many medical providers are attentive to the needs of children with disabilities, some are not.31Alice’s physician often keeps them waiting but then has only moments to spend with them. If she does not come, I will kill the doctor or someone, it is so hard. Alice cannot sit still for two minutes, let alone 45 minutes at the doctor. We have to wait for the room. Then the nurse. Then the doctor. Then the doctor has five minutes allotted to you, and she is fighting, does not want to be touched. They say turn her around but I can’t. It can be a real trip.

Doctor visits are much more manageable if one adult can focus on Alice and the other on the doctor. Mary is appalled by the lack of empathy among doctors who expect her to turn Alice about on a moment’s notice, when she is having a tantrum, or when they have already waited far too long for their examination. I can think of things my daughter does not think of. Or, I can write the answers while she asks the questions. There is so much going on in the doctor’s office and then Alice is all over the place. We have to try to keep an eye on her. So I go to the appointments too.

Mary spends a lot of time at home playing with Alice, and chooses activities that will enhance development. Like many grandmothers, Mary tries to balance stimulating and enriching activities with calming activities. I try to do lower key things with her. She will not sit still to read a book. My house looks like a nursery school. I have all kinds of toys here. She loves music. I do calming things to calm her down. She is go, go, go. She loves to jump I have a trampoline in her bedroom.

But her top priority is safety. At age four and a half, Alice requires constant supervision, in part because kids with Williams syndrome tend to be very social. You have to watch her every minute. If you turn your back she will be out in the road. She has no stranger danger. They think everybody is their best friend. She does not comprehend. No safety awareness for running in the road. You have to watch her like a hawk. If you don’t you pay the price.

When we asked Mary whether she takes Alice on outings, she explained how sensory challenges can complicate outings. It is really hard. I have tried. There is a nice park not far from where I live. I have tried to take her to that park. There is a walkway into the park that is covered in gravel and she gets hung up on sensory. It is so hard to get her to walk on that gravel. She will walk so far and sit down and play with the rocks. It is hard to get her to go to the swings.

She describes the family’s efforts to locate a therapist to help Alice learn to transition from one activity to another more readily. She has trouble with transitions. We are having a lot of problems finding a person who would help us with these transitional things in the house, we had one set up and she cancelled. It is hard to find a good therapist who will come to the house. There are businesses and the intake people are good but the person they send to your house has no experience with children. We post ads looking for people, but often the person who comes to work with your kid has little experience with children.

Increasingly, grandparents are becoming de facto or legal guardians of, grandchildren with disabilities and, like other scholars, we find that the process

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may be rewarding, but may also be daunting.32 Reasons grandparents take custody or guardianship include early parenthood, parental abuse, substance abuse, imprisonment, and poor mental health.33 When parents are not fit to parent, grandparents often pursue custody or guardianship to provide their grandchildren with a safe, stable environment. Often they take such steps to prevent their grandchildren from entering, or to release them from, foster care. Gaining responsibility and then providing around-the-clock care and supervision of their grandchildren with disabilities overwhelms many grandparents. It is almost always an unexpected turn of events. Custodial grandparents in the US often have relatively fewer resources. Custodial grandparents are more likely to be Black and Hispanic and living near the poverty level.34 Fully 63% are women, 26% have disabilities, and though 56% are in the labor force, 19% are poor.35 As a result custodial grandparents tend to have more adverse financial, work and retirement, social, emotional and physical consequences.36 Even when their own health and resources are dwindling, most custodial grandparents see no end in sight. They cannot imagine relinquishing custody. Parenting their grandchildren is vital, life sustaining work but, as we learned through our interviews, it may adversely affect grandparent wellbeing in a multitude of ways. Grandparents tend to spend a lot of money, and forego wages, for their grandchildren.37 It is a story of less money coming in, and more money going out.38 Grandparents with sufficient resources can readily spend considerable sums on the younger generations. But grandparents with lower incomes, and lower retirement incomes, often provide financial assistance at their own peril. Grandparents who provide financial assistance cover such expenditures as formula, diapers, therapies, medical equipment, rent, or utilities. In addition to spending money on their grandchildren, many grandparents forego wages to be available to provide care for their grandchildren with disabilities. Though some are already retired, some reduce hours, use their paid vacation and sick leave, change jobs, or retire early to provide care.39 Conversely, some delay retirement or maximize paid employment in order to have sufficient money to cover expenses for their grandchildren. For those with insufficient resources, particularly those who have become legal guardians, long term financial security may be seriously eroded.40 Mary says her daughter and son-in-law only need occasional financial assistance. Their health insurance pays for most of Alice’s therapies, and her son-in-law works an extra day a week to cover the co-payments. Alice’s father would not need to work extra hours to cover the co-payments if Medicaid coverage were more equally available in all states and if it assured access to high quality care.41 Though their combined annual income is less than $80,000, and they are concerned about having enough money for their own old age, Mary and her husband help financially as much as they are able. Whatever needs supplementing, we try to do it. . . We help pay for music therapy. We get grants from developmental services to cover her music therapy. There are always supplements, things they need. We do a lot, as much as we can. My husband is also retired, and he gets Social Security and a pension. I have Social Security but no pension. We do whatever we can to help both kids with money, we don’t have a lot to give them, but we do what we can.

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In an ongoing effort to make sure that Alice’s needs are met, Mary and her husband have paid for private school. They also advocated for Alice and hired a lawyer. At age three, Alice enrolled in public school for early intervention. Though federal law requires them to do so, the public school did not provide the supports Alice needed. It was a hard, difficult thing, especially for my daughter. At the time, Alice could only speak five words and that was not consistent. Not a good situation. The school had no concept. We brought in pictures of her, lists of her strengths and needs, but they paid no attention. We might as well have burned them. We had taken her to specialists telling them how to create a program for her, saying you are going to have to hire a person to develop a program for her, but it was a nightmare in the school.

Mary says that Alice stayed at public school for four months and then they moved her to a small private school that emphasizes teaching children to talk. Initially my husband and I paid for part of it. Then we hired an attorney so the public school would have to help pay. We had to demonstrate that the public school was not giving her what she needed. They did an evaluation but we wanted an independent evaluation. But they said no and tried to take us to due process. They declined an independent evaluation. We were challenging the evaluation the school had done. We hired an attorney to settle in mediation, and the school gave us a financial settlement so that we could pay for her schooling for two years, plus to pay for the co-pays for the PT and OT in addition to the speech therapy from the school.

For now, Alice’s progress is good. But next spring the two years will end and the family will have to go back to the public schools for new evaluations and a new education plan. Then, if the plan is inadequate, they will have to go back to mediation to force the school to continue paying for a private school that will meet her needs. Hiring a lawyer to force implementation of a federal law is not something many grandparents have the resources to accomplish. Moreover, it is not something any of them should have to do. It usurps time, money, and other resources that families need to respond to disabilities. Caring for a grandchild with disabilities can have a substantial impact on employment and retirement plans.42 Some of the grandparents we interviewed had already retired, but others continue to juggle employment and grandchild care. Several come to work late or leave work early, reschedule meetings, use paid sick and vacation days, or change jobs to be available. Some note that care work can be harder than paid work and they keep one foot in the labor market as part of a strategy to be sure they are not providing even more care to their grandchildren. Mary notices the difference and is in no hurry to give up paid work entirely. Alice is very active and requires constant supervision, tiring Mary out. I retired year ago, I now work one weekend a month where I used to work. I watch Alice Monday through Thursdays. I used to work every Friday and Saturday. Now I just go once a month. I guess I am about 90% retired. It is a lot easier to work than it is to watch Alice.

In addition to caring for their grandchildren with disabilities, many grandparents must also manage their adult children. Some have to manage conflicting parenting styles while others have to manage sibling rivalry as adult children feud over how much care grandparents should be providing and whether it is equitably

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distributed.43 Mary does not have much trouble with the former, but she does with the latter. Sometimes her adult children mind that their siblings are receiving free grandparental care while they are paying for formal childcare. Mary says she has heard this complaint. She notices that her son occasionally resents the amount of care she is providing for her daughter’s two girls. She nips it in the bud. I think there is a little animosity there between my kids. My son and my daughter get along, but he says, “Oh you give them free childcare.” But I tell him we did that for his stepdaughter when she was little. We do more for my daughter because of the situation. He says little things, but he is mostly cool with it. I tell him, “don’t go there.”

Some grandparents, grandmothers in particular, find that they are in the midst of never-ending care work. Some provide simultaneous care work, caring for multiple relatives at one time. Others provide sequential care work, caring for one relative after another. Either way they are caring for grandchildren with and without disabilities, parents, spouses, and other family members with no end in sight.44 Balancing the needs of so many at once, year after year, can be overwhelming and adversely impact financial, work and retirement, social, emotional, and physical wellbeing. For example, Mary devotes a lot of extra attention to Alice’s sister to prevent her from feeling jealous. Mary enjoys time with both girls, but this adds to her never-ending care work. Like many grandparents we interviewed, Mary notices that Alice’s sister occasionally minds just how much attention Alice is getting. Mary tries to strike a balance by separating the grandchildren to give them special one-on-one attention. In addition to driving 40 minutes each direction, caring for Alice, and occasionally cleaning her daughter’s house, Mary is also covering the volunteer obligation at Alice sister’s school. Recently I have been going to Alice’s sister’s school. Her school requires parents to volunteer and my daughter does not get home till 6 pm and has to do supper and baths and bed, so I have decided to take on the volunteer work. . . to make up my daughter’s hours that she can’t do. I work in the lunchroom.

Additionally, Mary’s husband spends a great deal of time with Alice’s older sister so that Mary can focus on Alice, and vice versa. They tag team the girls so that both of their needs are met. He is wonderful. I could not do it without him. He is not crazy about changing diapers. He will take care of one while I take care of the other. He does a lot with the older sister so she does not feel slighted. We will take Alice’s older sister overnight for a weekend and do special things. For five years she was the only child. We like to make her feel special.

Mary says the relationship between Alice and her sister, who is five years older, is complex, particularly since the parents are hoping that her older sister will take care of Alice once they die. Understandably, this may create tensions between family members. When the older sister resents how much attention Alice is receiving, caring for them both becomes a lot more challenging for Mary. Her older sister loves her very much but there is a little bit of jealousy. If Alice gets in to her stuff, she gets mad. And as her sister gets older she realizes the severity, how Alice is very different and she needs help. The older sister does not know all the things, but my daughter and son-in-law are hoping she will take over once they are gone. Alice will never live independently. At least that is what we think.

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In addition to caring for Alice and her sister, Mary cares for her own mother. She is a simultaneous care worker, meaning that she cares for multiple people at the same time. Her care work is never done. Caring for so many generations at once can become quite burdensome, especially when some do not get along very well. Mary’s mother is becoming forgetful and in need of increasing amounts of care, but Mary is too tired to provide much. She says they do not get along well and can never live together. That is another fire we are trying to keep watch. She is probably close to needing a nursing home. I try to bring her something special and her protein drinks on my days off. I talk to her by phone every day. She is lonely. It gets hard because by the end of the day I’m shot. I don’t want to talk to anyone. She calls at dinner. I try to take 15 minutes to talk to her. I have to get supper for us. I get irritable. We are like oil and water. If she lived with me, I would probably kill her.

When grandparents are out and about with their grandchildren who have disabilities, one additional task they face is dealing with peoples’ reactions. Ableism is a pervasive form of discrimination and those with disabilities often face overt and covert forms of discrimination and bullying.45 Passerby’s reactions are often shaped by how visible disabilities are, the age of the people with disabilities, and the severity of the condition. As they go about their shopping or dining, for example, some onlookers are kind. Some are curious. Others turn away, cast judgmental glances, or make critical comments.46 Grandparents then have to perform the emotional work of deciding when, how, and whether to react. Many, though not all, of the grandparents we interviewed have developed a calm, educational approach that welcomes curiosity and questions. They would rather teach people about disabilities than have their grandchildren with disabilities become invisible or be judged. Caring for grandchildren with disabilities tends to have a mixed impact on grandparent social lives.47 Some sustain vigorous social and travel schedules, some downsize their social lives, and some forfeit social activities altogether as they provide care for their grandchildren with disabilities. To the detriment of their emotional and physical health, many have given up reunions with old friends, church, volunteering, and travel to care for their grandchildren.48 Mary is one of several grandparents we interviewed who has almost completely redefined her social life to be about her family and, in particular, about Alice. Given her part-time job and her care work, Mary does not have much time for a social life with people her own age. Instead, she socializes with other Williams families on line and in person. It seems like a lot of Williams kids and families are on Facebook groups and it is like we are friends and family with those other Williams kids and their families. After we got the settlement from the school, we decided we would throw a Christmas party for the Williams kids last year. We got 100 people, and we will do it again. We talk to the different moms, we see who is frustrated who is having a bad day. We support each other. We support the other grandmas who are doing what I’m doing.

The Christmas party was a big success and provided a much needed social gathering for children with Williams. Additionally, hosting the party brought Mary’s entire family together. Mary says her family is always supportive and provided tremendous help with the party.

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I’m close to my sister, and they are all supportive and helpful. If I have a bad day they are right there to support us. When we did the party, my family came out 100%, I can’t tell you how much they did, face painting, decorating, cooking.

She and her husband rarely plan or attend social events because they mainly care for Alice and then rest. They are watching their social lives shrink. At the end of most days, all Mary has energy for is watching Judge Judy. I don’t stay up till 11, gotta get to bed early. You try to make time for yourself. You do the best you can. Your world becomes very narrow. You are not as sociable. You don’t go out and do all the things you used to do. We still make arrangements to go out. When the kids are gone, we will go for an ice cream. My nephew was in a play and four of us went to the play, something different. Fun. Special. But your world comes down small. Williams encompasses your whole world. You do other things, but it takes over.

Mary and her husband both get tired. Because there are so few supports for Alice, they are providing more care than they ever imagined. At times the exhaustion can lead to tension. They are fiercely protective of their time together. It gets hard having time with my husband. I come in with the grandkids and ask him to watch her while I do this. I don’t have time to listen. The part he gets of me is the tired part at the end of the day. He is respectful. But sometimes he is trying to tell me something and the phone is ringing and we have to take it off the hook. We will get selfish, to watch a favorite program together, we will take the phone off the hook. There is so little time. It is better since I’m not working.

Caring for grandchildren with disabilities also tends to have a mixed impact on grandparent emotional wellbeing. Studies show that the impact of caring for grandchildren with disabilities can be both rewarding and draining.49 Grandparents who have enough resources often delight in spending time with their grandchildren and in the knowledge that they are making meaningful contributions. Grandparents with insufficient resources, particularly those who are custodial grandparents, often have to balance feeling delighted with feeling depleted, exhausted, and pulled in too many directions. For many, the emotional impact is shaped at least in part by whether they feel their efforts are valued by their adult children. Mary certainly feels appreciated. Like most of the grandparents we interviewed, she would not want to be paid but appreciates tokens of appreciation. Mary feels that her daughter and son-in-law are grateful for their help and that helps sustain positive emotional health. I do not get paid and I would not want to get paid. They will help us with things. They are always doing things like getting us a gift card for a restaurant we like to go to. They are good to us.

Similarly, caring for grandchildren with disabilities tends to have a mixed impact on physical well-being.50 Grandparents with sufficient resources and a firm commitment to their own health told us that the increased physical activity coupled with more nutritious meals are improving their physical health. But more often, we heard from grandparents who lack sufficient resources to prioritize their own health. Years of bending to lift growing grandchildren, and neglecting their own diets, exercise, and medical care, are taking a toll on physical health.

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Indeed, the combination of bad knees and bad backs, and grandparenting duties that require heavy lifting, adversely affects many grandparents. Mary rates her overall health as good, though she says she needs to be more careful about her diet and get more exercise. The trouble is the constant lifting. Providing so much care for Alice has taken a toll on her physical health and the toll keeps rising as Alice grows bigger. Physically my back and my knees are getting bad. I go to PT every week with her. When she was 20 pounds, easy to lift her, but now it is hard to get her in and out of the car seat, hard to lift her now that she is 40 pounds. When she decides she does not want to do anything she sits, and I have to pick her up and move her, 40 pounds. I have had a lot of back and knee problems taking care of her.

Caring for grandchildren with disabilities is a form of care work. Depending on the types and severities of diagnoses, the amount and complexity of that care work may vary markedly. Whatever the level of disabilities, however, we find a wide range of positive and negative impacts for grandparents. Of the 50 grandparents we interviewed not one wants to quit caring for their grandchildren with disabilities. But nearly all would all appreciate broader, deeper, and more stable supports for the entire family. Federal laws are not being enforced. Poverty-based benefits are not meeting the needs of children with disabilities. Ableism interferes with responsive social policies and benefits. Where families live makes a big difference when they have children with disabilities. Most programs, services, and supports vary markedly by geographic location. Generally poorer areas offer poorer supports for both grandchildren with disabilities and the grandparents who are caring for them.51 While some of the grandparents we interviewed live in resource rich environments, with readily available, enriching, and supportive services for the entire family, many live in areas where supports were incomplete, inadequate, or invisible. In the wake of learning that their grandchildren had disabilities, some have already moved to more resource rich areas, and some are contemplating a move. But for many, moving is not an option. Meager supports are draining these grandparents of already sparse resources.

Talking About, and Responding to, Childhood Disabilities The US has increasing rates of childhood disabilities but little increase in supports for their families. Roughly 17% of US children have developmental disabilities.52 Estimates vary somewhat but all show increasing rates. CDC uses the National Health Interview Survey (NHIS) to measure developmental disabilities, excluding attention-deficit hyperactivity disorder (ADHD) and learning disabilities, among children ages 3–17. They report that 7% of children have been diagnosed with developmental disabilities.53 Using the NHIS, and a broader definition of developmental disabilities that includes ADHD and learning disabilities, Boyle et al. (2011) report that 15% of children have disabilities. Though some types of childhood

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disabilities are holding constant or even declining, such as Down syndrome, spina bifida, and hearing loss, other types are increasing. Between 2001 and 2011, overall childhood disabilities increased by 15%, with the biggest gains in developmental disabilities.54 Zablotsky et al. (2017) report that among children the incidence of developmental disabilities rose from just under 6% to 7% between 2014 and 2016. Between 1997 and 2008, developmental disabilities for children ages 3–17 rose by nearly 14%. The biggest increases were reported for children with ADHD, 33%, and autism, 290%.55 From 2013–2015, 10% of children ages 5–17 were diagnosed with ADHD.56 Autism spectrum disorders have continued to rise steeply and currently about 1 in 50 US children have a form of autism.57 Disability rates vary markedly by sociodemographic factors such as race and ethnicity, income, education, and geographic location. Among adults, Asians and Pacific Islanders report the lowest rates and Blacks and Native Americans report the highest rates of disabilities.58 Among children, whites have the highest and Hispanics the lowest rates of developmental disabilities.59 Disability rates decrease as income rises. For example, mobility disability is five times more common among 45–64 year olds living below the poverty line compared to those whose income is twice the poverty level.60 Disability rates vary markedly by education level. Adults with only a high school education have disability rates that are three times higher than those with a BA, 12% and 4% respectively.61 Disability rates also vary by geographic region. Adults in West Virginia have the highest disability rates, over 19%, and in Utah have the lowest, just under 10%.62 Among cities, adults in Flint, Michigan have one of the highest rates, 22%, while adults in Fishers, Indiana, less than 300 miles away, have one of the lowest, under 4%.63 The way people define, discuss, and respond to disabilities in the US has varied tremendously over time. Traditionally, disabilities are understood as health conditions that impair body functions, limit activities, and restrict social participation.64 They fall into four broad categories: physical, mental, intellectual, and sensory.65 People may have more than one, onset may occur at birth or later, and the experiences of disabilities often change over the life course. Talking about, and responding to, disabilities varies over the years by a multitude of factors including age, cohort, geography, gender, race, and socio-economic standing.66 Our emphasis here is to clarify the individual versus the social response to disabilities. For centuries, individualistic models prevailed. A medical model of disability gained prominence in the 1800s, positing that disabilities are individual biological or psychological medical problem that require medical responses.67 Throughout the early 1900s, people with disabilities were often kept out of sight and, therefore, out of mind. Faced with tremendous societal pressures and widespread stigmatization, families often hid members with disabilities. Many were placed in asylums, sterilized, or ridiculed in exhibitions. Only some families could afford to pursue medical interventions and often procedures were neither effective nor humane. After WWI, many veterans returning from war had disabilities and the rehabilitative model gained strength as the US government began to provide rehabilitative services and focus on self-reliance and overcoming disabilities.68 Coupled with the continued influence of the medical model, the emphasis remained on helping

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individual people cope with disabilities through various therapies and adaptive devices. President F.D. Roosevelt had a disability and throughout his career championed many improvements for people with disabilities. He was a force, as Senator, then Governor, behind Veteran’s Memorial Highway on White Face Mountain in New York, allowing those with disabilities to access the summit. Nonetheless, he and his staff did not want him photographed in his wheel chair lest it make him appear weak.69 After WWII, when even more veterans returned with disabilities, the US government—and people more broadly—shifted their thinking. Prompted by disability rights leaders and determined parental advocates, more Americans began to see disabilities less as abnormalities that should be medically fixed and more as differences that should be socially accommodated.70 By the 1970s, a social model of disabilities was gaining strength. Disabilities are not the problem of individuals but a structural and cultural problem of the society in which individuals live.71 For example, the problem is not that Maria cannot walk. The problem is that we built the entrance to the movie theater without a ramp for her wheelchair. Indeed, physical impairments might not lead to disabilities at all if social structures and practices are sufficiently accommodating.72 Disability rights activists, and to a lesser degree American scholars, policy-makers, and medical personnel, increasingly noted that physical and social barriers, and not impairments, were blocking full participation in society. In conjunction with the broader Civil Rights Movement, disability advocates demanded equal treatment, equal access, and equal opportunities for people with disabilities.73 Within the Civil Rights framework, disability rights activists worked endlessly to curb marginalization of those with disabilities.74 Thanks to lobbying, marches on Washington, and tireless work by disability rights advocates, people with disabilities, and parents of children with disabilities, the 1973 Rehabilitation Act passed. The Act provided equal opportunity for federal, and federally funded, employment. The Act required equal access to public services and funded vocational training for people with disabilities.75 Ramps, curbs, bathrooms, theaters, busses, subways, hotels, offices, and governmental buildings were to be retrofitted, or built anew, with physical accessibility in mind. Some were; many were not. It is important to note that many who were not diagnosed with disabilities benefited greatly from these adjustments. For example, bathroom stalls that were made large enough for wheelchairs were then often retrofitted with changing tables for newborns and their parents. Curbs that were cut to enable smooth wheelchair use also enabled smooth use by children on bicycles and parents pushing strollers. Despite legislation, many with disabilities found that barriers to access remained in nearly all social spheres. Legislative successes continued, though implementation was, and still is, often half-hearted. The 1975 Education for All Handicapped Children Act assured equal access to public education, and mainstreamed education, in public schools. It was renamed in 1990, as the Individuals with Disabilities Education Act (IDEA). The Infants and Toddlers with Disabilities Program (Part C) of IDEA was created in 1986 to enhance development and minimize developmental delays for children with disabilities.76 All states provide early intervention to children with developmental

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delays or specific conditions until the age of three, but there is tremendous state variation in eligibility and benefits. Children who are screened and deemed eligible receive an Individualized Family Service Plan (IFSP). At age three, children typically become eligible for special education at preschools and schools through IDEA. Legislation allows parents a role in creating annual Individual Education Plans (IEPs) with schools for students with disabilities. Studies show these benefits are underused, particularly by racial minorities. At 24 months only 12%, of eligible children are receiving early intervention services and eligible white children are receiving benefits at five times the rate of eligible Black children. Similarly, analysis of benefit use for those older than three show that families from lower socioeconomic status, and those for whom English is not the first language, often have more difficulties participating in, and maximizing the usefulness of, IEPs.77 Ultimately, in 1990, the Americans with Disabilities Act (ADA) guaranteed equal treatment in, and equal access to, employment and public accommodations. Though all businesses and service providers are required to provide reasonable accommodations to employees and consumers with disabilities, many do not. Even when they expend a great deal of time and resources to achieve equitable access, people with disabilities often find their needs are unmet or denied.78 For example, Pittsburgh recently installed more bike lanes and in the process undermined accessibility by blocking paratransit, requiring local activists to demand reparations.79 The social model emphasizes that social institutions and practices create barriers to full participation as those with disabilities face exclusion, marginalization, and discrimination throughout their lives. Social institutions can, and should, be used to reduce these barriers and facilitate full participation.80 Under the social model, language stresses individuals and their social contexts rather than their conditions or diagnoses. Person-first, rather than condition-first, language means that it has become increasingly acceptable to say “person with a disability” rather than “disabled person.” Activists point out that people are more than whatever medical conditions or disabilities they may have, and people’s experience of medical conditions and disabilities vary widely.81 Indeed, people with disabilities are people first and foremost. While person-first language continues to be widely acceptable in most US academic, policy, and disability rights circles, language is shifting to the identityfirst in the United Kingdom, Canada, Australia, and at the World Health Organization.82 There, “disabled person” is more acceptable than “person with a disability.” Critics question whether the social model adequately addresses vast heterogeneity among people with disabilities and their experiences of disability in their daily lives.83 Various emerging minority, or diversity, models of disability posit that disabilities can, and should, be valued and celebrated. By stressing identity-first language, rather than person-first language, this approach recognizes the power that disabled people have as a group, the diversity they represent within society, and the pride associated with great accomplishments by people with disabilities. We feel that disabilities must be valued and celebrated within both person-first and identity-first language.

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Given the current debates between person-first and identity-first language, it can be tricky to talk about disabilities without offending. There are more nuanced phrases that may or may not be seen as offensive, such as “special needs” or “disabled person.” After we collected data, we transcribed the interviews, thus the words in the quotes are the exact words that grandparents used when talking about their grandchildren or others with disabilities. Some of their word choices may seem outdated or offensive within current conceptualizations of disability. Generally, however, we find that nearly all are careful and thoughtful with word choices. As authors of the book, we too have tried to be careful and thoughtful with our own word choices. Some scholars have advised us to use acronyms (children with disabilities becomes CWD). We find that to be too impersonal. Some have advised us to alternate between person-first and identity-first language, we find that to be cumbersome.84 As we go to press, studies in the US report that the majority of professionals, disability rights activists, and persons with disabilities, continue to prefer person-first language. Thus, we use person-first language throughout the book. Our emphasis in this book is the response to disabilities. Disabilities are not equitably distributed. Lower income families are more likely to have children with disabilities and those children are more likely to have significant disabilities. In fact, disability rates for households with incomes below the poverty line are 103 cases per 1000, while disability rates for households with incomes at four times the federal poverty line are 63 per 1000.85 The relationship between poverty and disability runs in both directions. Poorer parents tend to have more children with disabilities due to worse educations, incomes, health habits, and health care. Parents whose children have disabilities tend to become poorer due to reduced earnings and the need to maintain lower incomes to qualify for poverty-based programs.86 Our main concern is, are families whose children have disabilities receiving enough support? Do grandparents who are caring for children with disabilities have enough resources to continue providing that care? Our answer is: for the most part, no. Over time the US has seen some improvements in social responses to disabilities, increased social awareness of the power of words, and more people with disabilities participating more fully in all realms of social, economic, political, and cultural life. But there is vast room for improvement. Efforts are ongoing to diminish discrimination, stigma, and dependency, and to assure full rights of citizenship.87 Efforts are also ongoing to expand and stabilize key social programs that support those with disabilities, including SSI, Medicaid, SNAP, TANF and IDEA. But the current political climate is one of retrenchment and devolution to states, which would mean fewer benefits, smaller benefits, and more state variation. Our focus in this book is how grandparents care for grandchildren with disabilities and how that impacts grandparent financial, work and retirement, social, emotional, and physical health. We argue that better recognition, and support, of grandparent efforts would help assure more comprehensive care, and more equitable distribution of resources, for children with disabilities. It would also improve the grandparent wellbeing.

Overview of Book

17

Overview of Book Grandparenting Children with Disabilities examines the ways that grandparents provide care for grandchildren with disabilities and the impact of that care on grandparent financial, social, emotional, and physical wellbeing. Chapter 2 explains the theoretical frameworks we use throughout the book. We employ a life course framework that emphasizes cumulative inequality theory. We then analyze why reliance on grandparents is intensifying in the US, and address the links to the US reliance on poverty-based social welfare programs and the lack of federal benefit guarantees for working families. Finally, we lay out the methods, data, and analysis used throughout the book. Part I of the book examines all the different types of care work grandparents perform when they care for their grandchildren with disabilities. Chapter 3 explores a topic about which we never asked. During the interviews, we did not ask if grandparents have a close or affectionate relationship, or if they experience love, laughter, or joy when caring for their grandchildren with disabilities. Rather, those comments bubbled to the surface as they talked. It is clear that for most, grandparenting children with disabilities generates special moments of love, joy, and laughter. Most of the grandparents talk about close ties and strong bonds with their grandchildren who have disabilities. To differing degrees, they tend to focus on positive rather than negative times. They are aware of how valuable their care is to the entire family and some think it has brought their families closer together. For those with the greatest demands and the fewest resources. Grandparenting can be overwhelming and leave them wondering how long they can sustain care. For those with lighter demands and sufficient resources, grandparenting is often one of their greatest joys and offers new meaning and purpose to their lives. Chapter 4 focuses on the difficulties involved in diagnosing disabilities. Whether diagnoses occur before birth or in high school, our respondents’ stories suggest that medical providers and families have a wide variety of approaches and responses. Some doctors tell families as much as they possibly can while others tell them as little as possible. Similarly, some families want to find out everything they can while others are reluctant to learn much at all. Disabilities are complex. Children with the same diagnoses may have very different experiences and those experiences may change as they age. Moreover, original diagnoses may be complicated by additional symptoms and diagnoses. The grandparents we interviewed described long term, complex, and often frustrating diagnostic experiences. Far from being a single event, diagnosing is often an ongoing process that may last a lifetime. Grandparents describe how families expend time, energy, money, and patience pursuing, accepting, and acting upon diagnoses for their grandchildren. It is clear that when the process is smooth, grandchildren tend to receive early, proactive interventions; when the process is bumpy those interventions are often delayed and grandchildren go without needed therapies. Chapters 5 and 6 explore intensive grandparenting. Because there are so few supports for families who have children with disabilities, grandparents are providing

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1 Grandparenting Children with Disabilities

a lot of care. For many grandparents, the roles of grandparenting and parenting are converging. Just as parenting has become more intensive, so has grandparenting, particularly when grandchildren have disabilities. The degree of intensity is linked both to how many hours of care, and what types of care, they are providing. For some grandparents, care work is moderately intensive; challenges may indeed be challenging but can often be taken in stride. Grandparents may be helping occasionally, on a regular schedule, or even around-the-clock with fairly routine care for grandchildren including meals, dressing, medications, therapies, and homework in addition to arranging outings to the park or museums. We assess those cases in Chapter 5. For others, grandparenting children with disabilities can be extremely intensive. In addition to providing routine care, grandparents provide intense supervision and intense medical treatments. In addition to assisting their grandchildren with feeding, bathing, dressing, toileting, and medicating, some grandparents provide constant supervision and handle specialized medical equipment and treatments. We discuss those cases in Chapter 6. Grandparents providing extremely intensive care tend to employ a variety of techniques to balance multiple responsibilities and keep their grandchildren comfortable, stimulated, and thriving as much as possible. As their stories demonstrate, some provide care despite limited resources and health problems of their own. Though they know that the intensive care work they provide is vital, valuable, and life sustaining, some grandparents wish they could just relax and play. They would like to do a lot less parenting and a lot more grandparenting. Chapter 7 focuses on the growing numbers of grandparents who are becoming legal or de facto guardians. About one-fourth of the grandparents in our sample were either legal or de facto guardians and not one of them ever intended to take on that role. Grandparents become parents of their grandchildren when their adult children struggle with physical or mental health issues, early parenthood, insufficient incomes, imprisonment, and, increasingly, substance abuse. The recent opioid epidemic is responsible for some of the increase in custodial grandparenting. Roughly 115 people die per day in the US due to an opioid overdose, and many more struggle with addictions that interfere with their ability to parent their own children.88 Grandparents seek custody only after their adult children prove again and again that they cannot or will not parent. Grandparents then parent their grandchildren, and most imagine that they will continue to do so until their grandchildren are adults. They cannot imagine relinquishing custody. Yet, it is clear that many do not have the financial, emotional, or physical resources to sustain such a high level of care over so many years. Chapter 8 explores the extent to which grandparents are helping to pay for the needs of grandchildren with disabilities. In general grandparents spend a great deal of money on grandchildren and this appears to be even more true when grandchildren have disabilities. We interviewed grandparents who were paying for food, clothes, child care, private schools, medicine, therapy, wheelchairs, specialized equipment, and lawyers. Moreover, grandparents tend to reduce or forego employment to provide care, thus magnifying the financial implications of care work. We interviewed grandparents who had reduced hours, changed jobs, and retired early to

Overview of Book

19

care for grandchildren with disabilities. We also interviewed some who were delaying retirement because they needed to maximize their incomes to cover costs for their grandchildren. While some can easily cover these financial expenditures, others are growing concerned as they deplete savings, increase debt loads, forfeit retirement travel plans, and worry about their own long term financial security. Chapter 9 examines the extent to which grandparents manage their adult children. Working as a team to help raise the next generation of grandchildren with disabilities requires similar views on parenting and minimal sibling rivalry. Some grandparents face little conflict; family members agree about parenting styles and the distribution of grandparent support. Some grandparents readily minimize conflict when they have different views on parenting and fairness. Others face a great deal of disagreement about the amount and types of care grandchildren most need. Or, they face criticisms that grandchildren with disabilities are receiving more than their fair share of grandparent support. Managing adult children with regard to parenting styles and sibling rivalry is an extra set of responsibilities that many grandparents must wrestle with when they care for grandchildren with disabilities. Chapter 10 explores never-ending care work. To be included in our study, all of the grandparents we interviewed are providing care to grandchildren with disabilities. Most of them are also caring for their other grandchildren, particularly the siblings of their grandchildren with disabilities. When those siblings do not get along, grandparenting can be much more challenging. Many grandparents are also caring for their own parents, siblings, or partners. Some feel like the club sandwich generation, caught in the middle, supporting multiple generations older and younger than themselves.89 Whether their care work is simultaneous or sequential, for many it appears to be never-ending. Nearly all expect to continue caring for their grandchildren with disabilities for as long as they are able. Few ever imagined they would be providing this much care as they approach their own retirement and old age. Chapter 11 examines how other people react to disabilities and how grandparents manage those reactions. Ableism is ongoing; those with disabilities often face discrimination, marginalization, and bullying. While many passers-by are kind and caring, some look away, ignore, judge, or make hurtful comments. Whether the reactions are coming from other family members, health care professionals, business employees, or people on the street, grandparents have to manage their reactions. It is a form of emotional work that can leave them frustrated and exhausted. Many have worked hard to develop calm, measured, educational responses, though we heard examples of responses that were neither calm nor measured. For those who are wondering, many grandparents made it clear that they prefer questions to being invisible. Part II of the book explores the implications of caring for grandchildren with disabilities on grandparent work, retirement plans, social lives, emotional health, and physical wellbeing. Chapter 12 explores the impact caring for grandchildren with disabilities has on employment and retirement. Though some are already retired, many juggle work and jobs. Just over one-fourth of those we interviewed quit work

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1 Grandparenting Children with Disabilities

or reduced hours to care for their grandchildren with disabilities. Among those who are still working, many told us that they change their schedules frequently, going in late, leaving early, and using paid vacation and sick days to care for their grandchildren with disabilities. Some change to more flexible jobs and some move to new towns to live in closer proximity. A few continue to work in part so that they can afford to continue making financial contributions for their grandchildren, while others cling to work so that they have a good reason to decline when they are asked to provide even more hours of care. Reducing work hours, altering work schedules, retiring early, moving, and caring for grandchildren with disabilities can have enormous impacts on short term and long term retirement plans. Chapter 13 explores the mixed impact of care work on grandparent social lives. Some grandparents told us that they are able to develop and maintain rich and rewarding social lives regardless of care work. Others redefine their social lives to focus on their family and, specifically, their grandchildren. But many, particularly those who have moved, retired early, or become custodial grandparents, find that caring for grandchildren with disabilities leaves them too exhausted and impoverished to sustain meaningful social activities. They forego visits with old friends, church, volunteer work, and travel to care for their grandchildren. Chapter 14 examines the mixed impact of care work on grandparent emotional wellbeing. Caring for grandchildren with disabilities may generate very positive, and very negative, emotional impacts. Grandparents with enough resources may enjoy spending time with their grandchildren and knowing that they are providing much needed, and much appreciated, care. But grandparents with too few resources, particularly if there are many strains in the family or they are custodial grandparents, often feel a great deal of emotional distress. They may be drained because their efforts are not appreciated, they are acting as parents rather than as grandparents, or they are neglecting their own wellbeing for the sake of others’. Chapter 15 assesses the impact of caring for grandchildren with disabilities on physical health. These too are decidedly mixed. For those with enough resources to balance their grandchildren’s needs and their own, a firm commitment to increased exercise and better diets can leave grandparents feeling good, if tired. But for those with fewer resources, poorer health, or whose grandchildren have more severe disabilities, care work is often deleterious to health. It is work, and it can be hard physical work that leaves middle-aged and older bodies depleted. We interviewed grandparents who are forfeiting exercise, proper meals, rest, sleep, doctor visits, dental care, and surgeries to provide care for their grandchildren with disabilities. Chapter 16 explores the importance of place and policy. The US could offer national programs that provide enriching and supportive services to all children with disabilities, wherever they live. It does not. Instead the US offers a fragmented system of programs that vary at the state, county, and city level. Programs like caregiver support groups, or free tumbling for children with disabilities, or GIGI’s house, are all locally created and operated. Your city may have all three, while ours may have none of the three. Programs such as early intervention and special education, though created by federal law, IDEA, are unevenly enforced and vary

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21

widely by state and town. Programs like SSI, Medicaid, SNAP, and TANF are all federal programs, but they are poverty-based, vary widely by state, beleaguered with red tape, and focused on gatekeeping. As a result, some grandchildren with disabilities grow up in resource rich environments while others, particularly those who are poorer, grow up in resource deserts. Grandparents told us about programs that work well, programs that are volatile, and programs that should be developed and expanded to provide broader and deeper support for grandchildren and grandparents alike.

Grandparenting Children with Disabilities Childhood disability rates are increasing, but neither the federal government nor employers have kept pace by providing benefits that help families respond. Given the dearth of childcare options, many families turn to grandparents. Every day in the US, millions of grandparents provide a wide range of care for grandchildren with disabilities. Whether they live hours away, nearby, or in the same house, they assist with routine care such as feeding, bathing, dressing, toileting, transportation, and schoolwork. All of the grandparents we interviewed provide care, ranging from medications, therapies, and doctor visits to feeding tubes, suctioning, and catheters. Some have the time and means for fun trips to the park, zoo, or campground; many do not. Our analysis of 50 interviews with grandparents caring for grandchildren with disabilities suggests their experiences vary substantially. They talk about love, laughter, and close bonds even as they struggle to obtain, and come to terms with, diagnoses of disabilities. For some the care work is minimal and optional. For many the care work is regular and intense, performed for many hours and years, and the only sustainable option for the family. For those whose adult children struggle with addictions or mental health problems, becoming custodial grandparents and providing around-the-clock care is the only option other than relinquishing grandchildren to foster care. Many also provide care for other family members, including spouses, parents, and adult children. Most expect to continue providing care for their grandchildren with disabilities as long as they are able. Care work reshapes their financial, social, emotional, and physical wellbeing. As cumulative inequality theory suggests, those with sufficient resources are more readily able to absorb the impact, those with fewer resources are not. Grandparents who have the fewest resources, and who are providing the most care for grandchildren with disabilities, are more likely to deplete their savings and incur new debts, reduce or end employment, restrict social lives, and forego travel plans. They are also more likely to experience anxiety and emotional distress, have disabilities of their own, and neglect their physical wellbeing through lack of exercise, improper diets, and delayed medical and dental care. Nearly all of the grandparents we interviewed need more social, medical, and financial support than they are receiving. They need a social welfare state that will

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1 Grandparenting Children with Disabilities

provide a safety net for them as they help to provide one for their grandchildren with disabilities.

Notes 1. Roberts (2018). 2. Merrick et al. (2018), Yang et al. (2018), Kahana et al. (2015), Hogan (2012), Sullivan et al. (2012) and Harrington Meyer and Stevens (2020). 3. Amorim (2019), Yancura et al. (2019), Bailey et al. (2013), D’Astous et al. (2013), PadillaFrausto and Wallace (2013), McNee and Jackson (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Lee and Gardner (2010), Tootelian and Varshney (2010), Green (2001), Heller et al. (2000), Schilmoeller and Baranowski (1998) and Gardner et al. (1994). 4. Merrick et al. (2018), Yang et al. (2018), Kahana et al. (2015), Harrington Meyer (2014), Hogan (2012), Sullivan et al. (2012) and Igel and Szydlik (2011). 5. Huo et al. (2018), Phillipson (2015), Harrington Meyer (2014), Hogan (2012), Igel and Szydlik (2011), Baker et al. (2008), Hughes et al. (2007) and Estes (2001). 6. Amorim (2019), Hillman and Anderson (2019), Yancura et al. (2019), Yang et al. (2018), Blacher et al. (2016), Green et al. (2016), Noy and Findler (2016), Woodgate et al. (2015), Kresak et al. (2014), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Lee and Gardner (2010) and Tootelian and Varshney (2010). 7. Bengtson (2001). 8. Dunifon et al. (2018). 9. Laughlin (2013). 10. Livingston and Parker (2010). 11. Luo et al. (2012). 12. Silverstein and Lee (2016). 13. Harrington Meyer (2012, 2014), Loe (2011), NACCRRA (2008), Angier (2002), Cherlin and Furstenberg (1992). 14. Hoang and Kirby (2019), Musil et al. (2013), Barnett et al. (2012), May et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010) and Bengtson (2001). 15. McDonnell et al. (2019), Maclean et al. (2017), Cicchetti and Valentino (2006), Spencer et al. (2005) and Sullivan and Knutson (2000). 16. Hoang and Kirby (2019), Silverstein and Lee (2016), Musil et al. (2013), Barnett et al. (2012), May et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010) and Bengtson (2001). 17. Harrington Meyer (2014) and Livingston and Parker (2010). 18. Livingston and Parker (2010). 19. Harrington Meyer (2014), Livingston and Parker (2010). 20. Harrington Meyer and Abdul-Malak (2016), D’Astous et al. (2013), Livingston and Parker (2010). 21. Hayslip et al. (2017), Harrington Meyer (2014), Cherlin (2010) and NACCRRA (2008). 22. Livingston and Parker (2010) and NACCRRA (2008). 23. D’Astous et al. (2013), McNee and Jackson (2012), Lee and Gardner (2010), Green (2001), Heller et al. (2000), Schilmoeller and Baranowski (1998) and Gardner et al. (1994). 24. Amorim (2019), Yancura et al. (2019), Bailey et al. (2013), D’Astous et al. (2013), PadillaFrausto and Wallace (2013), McNee and Jackson (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Lee and Gardner (2010), Tootelian and Varshney (2010), Green (2001), Heller et al. (2000), Schilmoeller and Baranowski (1998) and Gardner et al. (1994).

Notes

23

25. Amorim (2019), Barnett and Connidis (2019), Liu and Cong (2019), Yancura et al. (2019), Zhu et al. (2019), Amano et al. (2018), Choi and Zhang (2018), Lent and Otto (2018), Rupert and Zanella (2018), Kim et al. (2017), Baugh et al. (2016), Bordone and Arpino (2016), Caputo et al. (2016), Choi et al. (2016), Di Gessa et al. (2016), Lee (2016), Lee et al. (2016), Moore and Rosenthal (2016), Baugh et al. (2016), Tang et al. (2016), Whitley et al. (2016), Chen et al. (2015), Clottey et al. (2015), Doley et al. (2015), Fredman et al. (2015), Henderson and Bailey (2015), Lumsdaine and Vermeer (2015), Siordia (2015), Arpino and Bordone (2014), Hadfield (2014), Harnett et al. (2014), Hayslip et al. (2014a, b), Purcal et al. (2014), Bailey et al. (2013), Bundy-Fazioli et al. (2013), D’Astous et al. (2013), Hayslip and Smith (2013), Padilla-Frausto and Wallace (2013), Perkins et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), McNee and Jackson (2012), Bigbee et al. (2011), Conway et al. (2010, 2011), Yorgason et al. (2011), Falk (2010), Kelley et al. (2010), Lee and Gardner (2010), NeelyBarnes et al. (2010), Tootelian and Varshney (2010), Toremann (2010), Pruchno and McKenney (2002), Green (2001), Heller et al. (2000), Schulz and Beach (1999) and Schilmoeller and Baranowski (1998). 26. Taylor et al. (2018), Hillman et al. (2017), Abdul-Malak (2016), Mansson (2013, 2016), Bangerter and Waldron (2014), Backhouse and Graham (2012), Lee and Gardner (2010), Woodbridge et al. (2009) and Musil et al. (2006). 27. Guest et al. (2019), Cadwgan and Goodwin (2018), McDowell (2018), Findler (2014, 2016), Aston et al. (2014), Barrett et al. (2014), Barnett et al. (2012), Dworzynski et al. (2012), Miller et al. (2012), Watson et al. (2011), Lee and Gardner (2010), Woodbridge et al. (2009), Margetts et al. (2006), Schilmoeller and Baranowski (1998) and Scherman et al. (1995). 28. Center for Disability Rights (2018) and Marshall (2015). 29. Center for Disability Rights (2018) and Marshall (2015). 30. Bureau of Labor Statistics (2018), Carrillo et al. (2017), Findler (2016), Abdul-Malak (2016), Brandon (2016), Harrington Meyer (2014), Coontz (2013), Heymann et al. (2013), Hogan (2012), Lerner (2010), Baker et al. (2008), Lareau (2003), Minkler and Fuller-Thomson (2001), Hays (1996) and Cherlin and Furstenberg (1992). 31. Findler (2016) and Caldwell (2007). 32. Daley et al. (2018), Gallaghera (2017), Smith and Daley (2017), Atkinson (2013), Livingston and Parker (2010), Baker et al. (2008), Hayslip and Kaminski (2005), Glass and Huneycutt (2002), Goodman and Silverstein (2002), Janicki et al. (2000) and McCallion et al. (1997). 33. Carr (2019), Gallaghera (2017), Hayslip and Page (2012) and Scommegna (2012). 34. Noy and Findler (2016), Chen et al. (2015), Luo et al. (2012), Livingston and Parker (2010) and Baker et al. (2008). 35. Bureau of Labor Statistics (2018), Gallaghera (2017), Noy and Findler (2016) and Luo et al. (2012). 36. Amorim (2019), Carr (2019), Yancura et al. (2019), Zhu et al. (2019), Rupert and Zanella (2018), Noy and Findler (2016), Henderson and Bailey (2015), Lumsdaine and Vermeer (2015), Purcal et al. (2014), Bailey et al. (2013), Hayslip and Smith (2013), Padilla-Frausto and Wallace (2013), Hayslip and Page (2012), Scommegna (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010) and Tootelian and Varshney (2010). 37. Amorim (2019), Yancura et al. (2019), Harrington Meyer (2014), Bailey et al. (2013), PadillaFrausto and Wallace (2013), Folbre (2012), Glenn (2012), Kochhar (2012), Kochhar et al. (2011), Yorgason et al. (2011), Aumann et al. (2010), Conway et al. (2010), Falk (2010), Lee and Gardner (2010), Tootelian and Varshney (2010), Gladstone et al. (2009), NAC and AARP (2009), Neal and Hammer (2009), Rubin and White-Means (2009), NACCRRA (2008), Bittman et al. (2007), Heitmueller and Inglis (2007), Hillman (2007), Ludwig et al. (2007), Wang and Marcotte (2007), Brody (2006), Pavalko and Henderson (2006), Wakabayashi and Donato (2006), Heymann (2005), Waldrop and Weber (2005), Carmichael and Charles (2003), Stoller and Martin (2002), Ashton (1996) and Cantor and Little (1985). 38. Amorim (2019), Yancura et al. (2019), Zhu et al. (2019), Rupert and Zanella (2018), Henderson and Bailey (2015), Lumsdaine and Vermeer (2015), Harrington Meyer (2014), Purcal et al. (2014), Bailey et al. (2013), Hayslip and Smith (2013), Padilla-Frausto and

24

39.

40.

41. 42.

43.

44.

45.

46. 47.

48. 49.

1 Grandparenting Children with Disabilities Wallace (2013), Yorgason et al. (2011), Conway et al. (2010), Falk (2010) and Tootelian and Varshney (2010). Zhu et al. (2019), Rupert and Zanella (2018), Hayslip et al. (2017), Huo et al. (2018), Findler (2016), Ho (2015), Lee and Tang (2015), Lumsdaine and Vermeer (2015), Henderson and Bailey (2015), Purcal et al. (2014), Hayslip and Smith (2013), Folbre (2012), Baker and Mutchler (2010), NAC and AARP (2009), Ludwig et al. (2007), Park (2006), Pierret (2006), Harrington Meyer and Herd (2007), Wakabayashi and Donato (2006), Evandrou and Glaser (2003) and Evandrou et al. (2002). Amorim (2019), Carr (2019), Yancura et al. (2019), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Hayslip and Page (2012), Scommegna (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010) and Tootelian and Varshney (2010). Kaiser Family Foundation (2018a, b, c). Zhu et al. (2019), Rupert and Zanella (2018), Hayslip et al. (2017), Huo et al. (2018), Findler (2016), Henderson and Bailey (2015), Ho (2015), Lee and Tang (2015), Lumsdaine and Vermeer (2015), Harrington Meyer (2012, 2014), Purcal et al. (2014), Hayslip and Smith (2013), Folbre (2012), Glenn (2012), Aumann et al. (2010), Baker and Mutchler (2010), NAC and AARP (2009), Neal and Hammer (2009), Rubin and White-Means (2009), NACCRRA (2008), Bittman et al. (2007), Harrington Meyer and Herd (2007), Heitmueller and Inglis (2007), Wang and Marcotte (2007), Brody (2006), Park (2006), Pavalko and Henderson (2006), Pierret (2006), Wakabayashi and Donato (2006), Carmichael and Charles (2003), Evandrou and Glaser (2003), Evandrou et al. (2002), Stoller and Martin (2002), Pavalko and Woodbury (2000) and Cantor and Little (1985). Hoang and Kirby (2019), Findler (2016), Musil et al. (2013), Barnett et al. (2012), May et al. (2012), Miller et al. (2012), Anderson 2010), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010), Worrall (2009), Mason et al. (2007), Harden et al. (2004), Boll et al. (2003), Boll et al. (2003), Hastings et al. (2002) and Clarke et al. (1999). Vanegas and Abdelrahim (2016), Huang et al. (2012), Harrington Meyer (2014), Crowther et al. (2015), Martinez et al. (2012), Folbre (2012), Glenn (2012), Ogston et al. (2011), Anderson and Turner (2010), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010), Hewitt et al. (2010), King et al. (2009), Krantz-Kent (2009), NACCRRA (2008), Bianchi et al. (2006), Chesley and Moen (2006), Grundy and Henretta (2006) and England (2005). Center for Disability Rights (2018), Marshall (2015), Yu et al. (2015), Horne (2012), Ludlow et al. (2012), Maag and Katsiyannis (2012), Neely-Barnes et al. (2011), Park and Chitiyo (2011) and Ryan (2008, 2010). McIntyre and Hennessy (2012), Anderson (2010), Resch et al. (2010), Farrugia (2009), Peters and Jackson (2009) and Green (2003). Merrick et al. (2018), Yang et al. (2018), Brown et al. (2017), Samuel et al. (2017), Findler (2016), Kahana et al. (2015), Harrington Meyer (2014), Luo et al. (2012), Miller et al. (2012), Sullivan et al. (2012), Igel and Szydlik (2011), Williams (2011), Ravindran and Rempel (2011), Baker and Silverstein (2008a, b), Hughes et al. (2007), Dolbin-MacNab (2006), Turner (2005), Minkler et al. (1994) and Presser (1989). Moore and Rosenthal (2016), Tang (2016) and Jendrek (1993). Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Brown et al. (2017), Kim et al. (2017), Findler (2014, 2016), Baugh et al. (2016), Lee (2016), Mansson (2016), Margolis and Wright (2016), Tang et al. (2016), Whitley et al. (2016), Crowther et al. (2015), Doley et al. (2015), Dukhovnov and Zagheni (2015), Mahne and Huxhold (2015), Sprang et al. (2015), Wiemers and Bianchi (2015), Arpino and Bordone (2014), Bundy-Fazioli et al. (2013), Castillo et al. (2013), D’Astous et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), McNee and Jackson (2012), Conway et al. (2011), Gallagher et al. (2010), Lee and Gardner (2010), Toremann (2010), Woodbridge et al. (2009), Neely-Barnes and Dia (2008), Gerard et al. (2006), Szinovacz and Davey (2006), Mills et al. (2005), Goodman and Silverstein (2002), Kolomer et al. (2002), Pruchno and McKenney

Notes

50.

51.

52. 53. 54. 55. 56. 57. 58. 59. 60. 61. 62. 63. 64. 65. 66. 67. 68. 69. 70. 71. 72. 73. 74. 75. 76. 77. 78. 79. 80. 81. 82. 83.

25

(2002), Green (2001), Burnette (2000), Findler (2000), Force et al. (2000), Heller et al. (2000), Janicki et al. (2000), Reid and Hardy (1999) and Schilmoeller and Baranowski (1998). Choi and Zhang (2018), Lent and Otto (2018), Brown et al. (2017), Whitley and FullerThomson (2017), Abdul-Malak (2016), Choi et al. (2016), Lee et al. (2016), Moore and Rosenthal (2016), Baugh et al. (2016), Chen et al. (2015), Clottey et al. (2015), Crowther et al. (2015), Siordia (2015), Whitley et al. (2015), Chen et al. (2011), Hadfield (2014), Harnett et al. (2014), Harrington Meyer (2014), Hayslip et al. (2014a, b), D’Astous et al. (2013), Langosch (2012), Luo et al. (2012), McNee and Jackson (2012), Bigbee et al. (2011), Cohen et al. (2011), Igel and Szydlik (2011), Musil et al. (2011), Population Reference Bureau (2011), Anderson and Turner (2010), Kelley et al. (2010), Lee and Gardner (2010), Neely-Barnes et al. (2010), Toremann (2010), Baker and Silverstein (2008a, b), Baker et al. (2008), Cox (2007), Hughes et al. (2007), Mitchell (2007), Bachman and Chase-Lansdale (2005), Hayslip and Kaminski (2005), Blustein et al. (2004), Kataoka-Yahiro et al. (2004), Lee et al. (2003), Kolomer et al. (2002), Musil and Ahmad (2002), Green (2001), Heller et al. (2000), Janicki et al. (2000), Minkler and Fuller-Thomson (1999) and Schilmoeller and Baranowski (1998). McFarland et al. (2018), Kraus (2017), Seligman and Darling (2017), Morgan et al. (2015), Findler (2014), Houtrow et al. (2014), Hogan (2012), Feinberg et al. (2011), Baker and Mutchler (2010), Cox (2009), Park (2006) and Fuller-Thomson et al. (1997). Kraus (2017), Zablotsky et al. (2017), Centers for Disease Control and prevention (2015) and Hogan (2012). Zablotsky et al. (2017). Kraus (2017) and Houtrow et al. (2014). Blumberg et al. (2013) and Boyle et al. (2011). CDC (2017). Zablotsky et al. (2017). Bialik (2017) and Zablotsky et al. (2017). Zablotsky et al. (2017). Okoro et al. (2018). Okoro et al. (2018). Centers for Disease Control and Prevention (2018a, b, c, d), Okoro et al. (2018), Ross and Bateman (2018) and Bialik (2017). Bialik (2017). Schalock et al. (2007). Albrecht (2012). ADL (2018), Dunn and Andrews (2015), Reckase (2013) and Priestley (2003). Priestley (2003). ADL (2018), Dunn and Andrews (2015) and Priestley (2003). ADL (2018) and Dunn and Andrews (2015). Dybwad (1990). Dunn and Andrews (2015) and Priestley (2003). Priestley (2003). Priestley (2003) and Scotch (1984). Carey (2010). ADL (2018) and Priestley (2003). Stuart (2018), U.S. Department of Education (2018) and NECTAC (2011). NECTAC (2011) and Araujo (2009). Dunn and Andrews (2015), Priestley (2003) and Harlan and Robert (1998). https://www.huffingtonpost.com/entry/people-with-disabilities-protest_us_ 5baa3d65e4b07dc0b87e1264 WHO (2011), Priestley (2003) and Verbrugge and Jette (1994). Dunn and Andrews (2015), Albrecht (2012) and Priestley (2003). Dunn and Andrews (2015) and Albrecht (2012). Barnes (2013).

26 84. 85. 86. 87. 88.

1 Grandparenting Children with Disabilities

see Dunn and Andrews (2015). Houtrow et al. (2014). Seligman and Darling (2017), Hogan (2012) and Park (2006). Albrecht (2012) and Priestley (2003). CDC (2017), Heller and Harris (2011), US Department Of Health And Human Services (2008), Heller and Ganguly (2004) and Pruchno (1999). 89. Margolis and Wright (2016), Vanegas and Abdelrahim (2016), Dukhovnov and Zagheni (2015), Wiemers and Bianchi (2015), Harrington Meyer (2014), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010) and Hewitt et al. (2010).

Chapter 2

Cumulative Inequality and the Welfare State

To understand more about the types of care work that grandparents provide when their grandchildren have disabilities, as well as the impact of that care work, we employ a life course approach that emphasizes cumulative inequalities. We analyze why reliance on grandparents is intensifying in the US and assess the paucity of federal and employer supports for families in the US. Specifically, we discuss how grandchild care is linked to increases in parenting and working patterns, US reliance on poverty-based social welfare programs, and the lack of federal benefit guarantees for working families. These discussions provide the framework for the remainder of the book in our analysis of the types and impacts of care work when grandchildren have disabilities.

Theoretical Frameworks: Cumulative Inequality from a Life course Perspective We use a life course perspective to explore what types of care grandparents provide for grandchildren with disabilities and the impact of that care on grandparent wellbeing. During the interviews, we asked respondents to tell us about care work across the life course: in the past when their children were young, in the present when their grandchildren are young, and in the future when grandparents will be growing old. Life course theory suggests that history matters and that the impact of historical events is shaped by age at the time of the event.1 Lives are linked through social relationships and while everyone has individual agency to construct their own lives, this agency can be amplified or constrained through social structures and interpersonal relationships.2 From within a life course framework, cumulative inequality theory is central to understanding wellbeing in old age.3 Cumulative inequality theory suggests that social institutions generate inequality and that disadvantage increases exposure to © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_2

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risk while advantage increases exposure to opportunity.4 Over the life course people have different opportunities, circumstances, decision-making, even luck, all of which lead to different financial, social, emotional, and physical outcomes in older ages. Early-life differences in education, health, careers, compensation, and mental health problems, for example, contribute advantages or disadvantages in older ages.5 Accumulated inequalities do not tend to dissipate with age. Rather they often become more pronounced. Nonetheless, the extent of disparity may change over time due to a wide array of social and structural factors including social demographic, economic, political, and public policy factors. Notably, federal and state welfare policies can ebb and flow, providing more, or less, support for families with disabilities.6 A life course perspective also helps us to understand the cumulative implications of giving, and receiving, care. It provides a framework to understand intergenerational family member interactions and interdependencies across different life stages.7 All of us need care at certain points in our lives, particularly when young, ill, disabled, or frail in old age. The economic value of the care family members provide for each other is roughly $500 billion a year.8 Care work may be narrow or broad. It may include feeding, bathing, and dressing; it may include advocacy, managing medical care, household expenses, cleaning, transportation, and laundry; and it may include simply being there to keep family members company, safe, and supervised.9 Care work may be performed by paid professionals, but fully 75% of it is performed by unpaid family members. Some people perform a lot more care work than others. Indeed, some care for multiple people in either sequential, or simultaneous care work, while others, those with sufficient resources, export care work by hiring others to perform it in their stead.10 Here, our emphasis is the impact of care work on grandparents who care for grandchildren with disabilities. Historically, grandparents were regarded more often as care recipients; frail older people in need of care. With longer life expectancies, and longer active life expectancies, increasingly grandparents are becoming caregivers.11 The life course perspective highlights the cumulative effects of various choices that grandparents make from available opportunities, programs, and policies, at different stages of their lives, on their social, financial, emotional, and physical wellbeing.12 Though often ignored in analyses of cumulative inequality, care work may have enormous lifelong consequences for those who perform it.13 Care work may well be the single most rewarding form of work many humans ever perform. Rarely externally rewarded, it is mainly prompted by intrinsic rewards.14 Thus, while it is repetitive work to change diapers or feeding tubes, doing so for someone you love, and who loves you, may make it highly rewarding. However rewarding, care work often comes with considerable financial, social, emotional, and physical costs. It is work. Why do grandparents care for their grandchildren? Several theories, all of which can be explored within a life course framework, prevail. Exchange and reciprocity theories suggest that families tend to exchange and reciprocate across generations, creating a buffer against economic shortfalls.15 In contrast to government or market supports, family supports often come with strings attached, such as expectations

Theoretical Frameworks: Cumulative Inequality from a Life course Perspective

29

about normative behavior, moral obligations, or long-term reciprocation. To what extent are grandparents caring for grandchildren with the expectation that the younger generations will in turn care for them when they become frail? We asked grandparents whether they think their adult children and grandchildren will care for them when they are old and frail. Given that most families are focused on providing needed care for grandchildren with disabilities, we found little evidence that grandparents expected reciprocal care. Feminist theories are quick to point out that care work exchanges between generations are rarely gender-neutral; at all stages of the life course, women are more likely to perform virtually all types of care work.16 Women generally, and grandmothers in particular, are often regarded as more natural or better care providers. They rarely side-step care work even when working full-time or out-earning their partners. The amount of care any one person provides over the life course varies remarkably, but women tend to provide substantially more than men. Though the gap has shrunk in recent decades, in the US, women still provide about twice as much as men.17 About 60% of unpaid care workers are women, and they perform more personal care, devote more hours of care, and spend more years providing care than men. In direct contrast to reciprocity arguments, feminists point out that women are significantly more likely to provide care for, and less likely to receive care from, men. Moreover, feminists point out that care work varies by race, ethnicity, and income levels. Blacks and Hispanics, and those who are near or below the poverty line, provide more hours and years of care.18 To what extent are grandmothers adopting or resisting gendered roles? While we found tremendous evidence of women performing, and resisting, care work, none of them critiqued this gendered division of labor. For example, not one asked why they, and not the grandfathers, were doing so much. Political economic theories note that the demand for support from grandparents varies over time and country. The amount of care work grandparents perform, for example, ebbs and flows in response to socio-demographic trends, the presence or absence of various welfare state programs, shifts in the economy, or lack of alternatives.19 Comparisons of different country policies have found that where state supports to working families are more extensive, grandparents provide less care; where state supports are meager, grandparents provide much more support. Since the 1980s, the US has been in the midst of on-going efforts to devolve and retrench social welfare programs. To what extent are grandparents providing care to address unmet need? We found tremendous evidence of grandparents responding to unmet need. Providing care in middle age may well be emerging as a stage of the life course for many. We find that while some chose to provide care when other options were readily available, most provide care in a context of few other options or resources. To assess the positive and negative impacts of the care work that grandparents provide for children with disabilities, we employ a life course perspective that highlights the cumulative effects of various choices, opportunities, policies, and programs at different stages of life.20 Young mothers, who may have lower earnings and less job security, face different sets of issues than grandparents, who may have

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relatively higher earnings, and greater job flexibility or security, when contemplating whether to leave employment to care for children with disabilities. Taking time from work to care for a child with disabilities during periods of low unemployment may have different consequences than it does in periods of recession, when it can be much riskier to take time from work for a sick child or a snow day.21 Organizing retirement travel plans may be much more difficult during a recession in which many lost their pension investments, left work prematurely, or unexpectedly spent a great deal of money on their adult children and grandchildren. The financial, social, emotional, and physical costs incurred at any one stage may not seem like much, but the cumulative impact of providing so much assistance over so many years may negatively impact wellbeing over the various stages of the life course.22 Generally, as suggested by cumulative inequality theory, those with the most resources and those providing the least intensive forms of care fare best; those with the fewest resources and those providing the most intensive forms of support face the most adverse impacts on their wellbeing. It is the latter group that would benefit most from expanded federal policies that support families who have children with disabilities.

Understanding Increasing Reliance on Grandparents Children with disabilities often need more, and more specialized, sorts of care. Yet there are often fewer care options available because many providers are unable or unwilling to provide care to those with disabilities.23 Increasing rates of certain childhood disabilities increase the need for assistance raising children, and grandparents are increasingly likely to provide that assistance. Reliance on grandparents to care for grandchildren with disabilities is linked to a variety of factors, including increasing single parenting, poverty among single parent families, increasing employment, particularly full-time employment, among women with children, and woefully inadequate childcare options.24 Single parent families are increasing, thus so is the demand for assistance from grandparents. Like many countries, the US has experienced a retreat from marriage and a dramatic increase in single parent families. The share of adults who are married has dropped steadily from 72% in 1960 to a current rate of just 50%, and the drop is much more pronounced for Blacks and Hispanics than whites. Hence, 72% of all Black births, compared to 53% of Hispanic and 29% of whites, are to unmarried women.25 Families headed by a single mother are much more likely to be poor, and may be more likely to rely on unpaid, family provided, childcare. Among families with a child under 18, 7% of all married couples, compared to 36% of female-headed households, are poor.26 Single parenting may be especially difficult for Black and Hispanic mothers; 41% of Hispanic and 39% of Black single mothers live in poverty. Moreover, Americans are turning to grandparents for childcare because they are working more than ever, and more than people in other countries.27 In contrast to EU nations, where women’s increasing labor force participation has been linked to

Poverty-Based Social Welfare Programs

31

higher use of formal day care and lower reliance of grandparent child care, in the US increasing women’s labor force has been linked to lower reliance on formal day care and higher reliance on grandparents.28 Women, particularly those with young children, are increasingly likely to work despite the lack of stability and flexibility at their workplace.29 Notably, the percentage of working women with children under age three rose from 34% to 65% between 1975 and 2016. Such demographic changes have reshaped US families. Mothers are now the single or primary breadwinner in 41% of families, up from just 11% in 1970.30 Relatively high fertility rates, coupled with rising rates of single motherhood and mothers working, have increased the demand for, but not the supply of, high quality and low cost childcare. As a result more families may call upon grandparents.

Poverty-Based Social Welfare Programs Despite growing need, neither the US welfare state nor U.S. employers have responded to the needs of young working families.31 Grandparents in the U.S. tend to be called upon for help more often than in other countries because social welfare programs in the U.S. are primarily poverty-based rather than universal.32 As such, benefits tend to be small and the emphasis tends to be on gatekeeping. Compared to most European nations, the US welfare state provides little support for working families.33 Studies show that where state supports for working families are generous, grandparents provide less care and where state supports are meager grandparents provide much more support.34 Predominately poverty-based, US welfare programs, notably SSI, Medicaid, SNAP, and TANF provide only meager, and often sporadic, assistance for children with disabilities. Nonetheless, in recent years we have seen some expansions in these programs. Medicaid/CHIP was expanded as part of the Affordable Care Act, and SNAP was expanded as part of the response to the Great Recession 2007–2009. Moreover, in some cases eligibility rules are expanded to allow somewhat higher income families with disabilities to gain access. More lenient eligibility guidelines for families with disabilities is particularly important because poor and near poor families have higher rates, and greater severity, of disabilities.35 Obtaining benefits through any of these programs can be daunting. Families are often unaware of benefits or unable to satisfactorily complete the onslaught of paperwork to secure and sustain benefits over time, particularly if there are changes in income, assets, household composition, or diagnoses.36

Supplemental Security Income (SSI) SSI is a federal program created in 1972 to give cash assistance to those who are poor and disabled or poor and elderly. It is the key form of cash assistance for those with

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disabilities. Although the proportion of children relying on SSI has risen steadily since the program’s inception, less than 2% of children under age 18 receive SSI. To be eligible, children with disabilities must demonstrate severe functional limitations. Generally eligibility is restricted to those with incomes below 75% of the federal poverty line, though that varies by age of recipient, composition of household and state residence. SSI asset limits, which have been frozen since 1989, allow an individual to have assets up to $2000 and a couple up to $3000.37 Average SSI benefits in 2018 were $553 a month. More than half of recipients receive the basic monthly SSI benefit, which in 2018 was $750.38 Though some states choose to augment benefits, basic SSI benefits are equal to about 75% of the federal poverty line. Benefits are reduced for recipients who have other sources of income or support including wages, pensions or child support.39 SSI lifts some out of poverty and many more out of deep poverty, as defined by having household income below half of the federal poverty line. The poverty rate among SSI recipients in 2013 would have been 63%, without SSI, and with SSI it was 42%.40 Obtaining benefits involves administrative burdens. Eligibility is so difficult to obtain that only 25% of those who are eligible actually receive SSI.41 To enroll, applicants must attend interviews, prove disability status, prove immigration status, and provide records such as pay stubs, lease agreements, and diagnostic records.42 In most states those eligible for SSI are eligible for Medicaid, though some states require them to apply separately to each program.43 About 60% of SSI benefits also receive SNAP and 25% receive housing assistance. Critics, and the grandparents we interviewed, point out that SSI could be improved if the income and asset tests were relaxed, benefit sizes increased, and red tape minimized. In our interviews some who rely on SSI complained about meager benefits, ongoing difficulties navigating the bureaucratic red tape, and sporadic but unexplained changes to their monthly benefit.44

Medicaid The U.S. does not provide national health insurance. About 12%, most in households near or below the federal poverty, are uninsured.45 Another 29% are underinsured.46 Most obtain private health insurance through jobs, but employers tend to provide coverage to their higher paid full-time workers.47 Private insurance may be less desirable for people with disabilities, however, because they may need specialized care such as ongoing physical or speech therapy, assistance with feeding tubes and IV medications, attendant care, or medical equipment or supplies, which are often excluded under private health insurance.48 Medicaid coverage of those services is more robust, thus it is often the preferred source of health insurance for people with disabilities. Created in 1965, Medicaid provides health insurance for low income Americans. Currently 20% of the US population, and one-fifth of all health care expenses, are covered by Medicaid. Medicaid covers a wide range of health services including doctor’s visits, hospital

Poverty-Based Social Welfare Programs

33

Table 2.1 Medicaid income eligibility: highest and lowest state income maximums, as percent of the federal poverty line, for children, by eligibility status, 2018 Lowest Maximums Medicaid coverage for infants ages 0–1 Medicaid funded Louisiana 142% CHIP funded for uninsured children Oregon 133% Medicaid coverage for infants ages 1–5 Medicaid funded Maryland 138% CHIP funded for uninsured children Massachusetts 133% Medicaid coverage for children ages 6–18 Medicaid funded 9a states 133% CHIP funded for uninsured children Oregon 100% Separate CHIP for uninsured children Oregon 100%

Highest Maximums Iowa 380% New Hampshire 323% District of Columbia 324% District of Columbia 324% District of Columbia 324% District of Columbia 324% New York 405%

a

California, Hawaii, Kentucky, Maryland, Nebraska, Rhode Island, South Carolina, Tennessee, Wisconsin Source: Kaiser Family Foundation (2018c)

visits, prescription drugs, pre-natal care, home and community-based services, assistive technologies, and mental health services. Medicaid eligibility rules have changed dramatically in recent decades with expansion of Children’s Health Insurance Program (CHIP) and the Affordable Care Act (ACA). As a result, many more, particularly children, have qualified for Medicaid. Currently, 43% of Medicaid enrollees are children, and Medicaid covers 83% of children in poverty.49 But eligibility and benefits vary widely by states.50 Table 2.1 shows the lowest and highest state maximums as a percent of the federal poverty line for children of different ages and eligibility statuses. In Louisiana, newborns on Medicaid funded programs are eligible in families with incomes up to 142% of the federal poverty line. By comparison, in Iowa they may have income up to 380% of the federal poverty line. In Oregon, uninsured children up to age 18 on separate CHIP funded programs may live in families with incomes up to the federal poverty line while in New York they may have incomes up to four times the poverty line. Currently 48% of children with special health care needs—only some of whom are diagnosed with disabilities—are covered by Medicaid/CHIP. States are required to provide Medicaid to all SSI beneficiaries: generally those whose incomes are below 75% of the federal poverty line with assets below $2000 for a single adult and $3000 for a couple.51 But 85% of children on Medicaid do not receive SSI and qualify for Medicaid another way.52 Some qualify though optional ACA expansions which allow states to set the income limit at 138% of the federal poverty line and remove the asset test.53 Others quality on the medically needy pathway when their incomes minus their health care expenses places them below the state limits.54 Some qualify through the Katie Beckett Rule, or comparable Medicaid home and community-based services (HCBS) waivers, which count only the child’s and not the family’s income, and allow children with incomes up to 222% of the federal

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poverty line to qualify for Medicaid.55 Through a multitude of pathways, Medicaid has expanded coverage in recent decades and increasingly large shares of children with disabilities are now covered. Medicaid provides a wide array of health care services that are particularly important for children with disabilities. Early Periodic Screening Diagnosis and Treatment (EPSDT), is a federally mandated program that provides health related services to over 13 million children who have special needs.56 EPSDT provides medical, hearing, dental and vision screenings and interventions as well as physical, occupational and speech therapies.57 EPSDT also covers private nursing, medical transportation, personal attendants, and some assistive technologies. Benefits may be shaped by diagnoses: a child with autism may receive in-home therapy as well as speech and occupational therapy, while a child with cerebral palsy may receive personal care, case management, and assistive technology.58 Medicaid also covers Long-Term Services and Supports (LTSS) through Home and community Based Waivers aimed at keeping people with disabilities in the community rather than in long term care facilities. LTSS covers services including attendant care, medical equipment, assistive technologies and such expenses accounted for 30% of Medicaid expenditures.59 LTSS services vary tremendously by state and in some states waiting lists for services are long.60 When compared to those with no insurance, those on Medicaid have better health outcomes and are less likely to postpone or go without needed care.61 Nonetheless children on Medicaid often receive lower quality care than those on private insurance, have difficulties locating providers who will accept Medicaid patients, and find it difficult to obtain specialized medical equipment.62 Families who pursue care through Medicaid, particularly if they are at or below the federal poverty line, often face difficulties obtaining prompt appointments, securing transportation to health care facilities, and coordinating care services.63 Fully 32% of US physicians will not accept Medicaid patients.64 Medicaid beneficiaries face tremendous paperwork and ongoing provider refusal to treat beneficiaries.65 In addition to all of the financial paperwork, those with disabilities must undergo cumbersome examinations and paperwork reviews to prove that they are sufficiently disabled. As a result some endure delays in eligibility and services.66 The administrative burdens are so substantial that only 75% of those who are eligible receive benefits.67 Medical expenses can mount quickly and usurp money needed for other household expenses. Fully 26% of US adults report that someone in their household is having problems paying medical bills and 12% say medical bills had a major negative impact on their family.68 The difficulties of acquiring and retaining health insurance, and paying for uncovered expenses, may make families rely more heavily on grandparents. Though some politicians are currently seeking to reduce Medicaid eligibility, coverage, and expenditures, most polls show that few Americans support proposed cuts.69 Critics point out that Medicaid could be improved if state variations were reduced, income and asset tests kept pace with inflation, and reimbursements to providers were increased so that more providers would accept Medicaid patients. Many grandparents we interviewed noted the importance of Medicaid in covering health care costs for grandchildren with disabilities, but several also noted that

Poverty-Based Social Welfare Programs

35

obtaining and sustaining Medicaid coverage was time-consuming, confusing, and at times, unsuccessful.

Supplemental Nutrition Assistance Program (SNAP) SNAP originated as the 1964 Food Stamps program. Each month about 40 million low-income Americans receive financial assistance aimed at improving food security.70 Food insecurity is particularly problematic for families who have children with disabilities; they are more likely to report food insecurity and more likely to rely on SNAP.71 Generally, SNAP is available to a household of three if they are at or below 130% of the federal poverty line, but the income tests are more lenient for those who are over age 65 or have disabilities. SNAP limits assets to $2250 for households without, and $3500 for households with people who are older or have disabilities.72 Those who are eligible for SSI are eligible for SNAP, although there is some state variation. Average SNAP recipients receive $127 a month in 2018, but benefits are larger for those who are deeper in poverty.73 Though benefits are small, SNAP reduces poverty and stimulates the economy. In 2016 SNAP lifted over three million out of poverty, and nearly two million out of deep poverty.74 SNAP expanded quickly between 2007 and 2011 due to the Great Recession and as the economy recovered both caseloads and expenditures have fallen.75 During economic downturns, not only does SNAP help families secure food, it stimulates the economy. Because nearly all of the benefit monies are spent quickly, each $1 increase in SNAP benefits during 2009 generated $1.70 in economic activity.76 Though SNAP has less red tape than some programs, qualifying can still be onerous. Applicants must conduct an eligibility interview, usually in person, and provide documents such as birth certificates, mortgage or rent receipts, proof of household composition and marital status, and pay stubs.77 Beneficiaries may have to reapply as often as every 6–12 months.78 Still, enrollment rates are relatively high in part because SNAP benefits are distributed through a credit card which is more efficient and less stigmatizing than food stamps used to be. Roughly 83% of those who were eligible in 2015 received benefits. Nevertheless, 150 million households in the U.S. remain food insecure.79 Benefits are sufficiently meager that an estimated 50% of households on SNAP remain food insecure.80 Critics note that SNAP could be improved if income and asset tests were relaxed, benefit sizes were increased, and red tape was minimized. The families we interviewed who receive SNAP report that the benefits are simply too small to substantially improve the quality of their diets. While SNAP is important to their household economics, the benefits are too meager and too often interrupted for reasons they do not grasp. When families struggle to put enough food on the table they may turn to grandparents to provide financial assistance, cohabitate to combine resources, or take custody of the grandchildren.81

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Temporary Assistance to Needy Families (TANF) TANF provides cash assistance to the poor, but in fact only 23% of families in poverty receive TANF.82 The number of TANF recipients has decreased from 1.9 million in 2006 to less than 1.3 million in 2017.83 TANF benefits are below two-thirds of the poverty line in all 50 states and DC.84 In 47 states the real inflation adjusted value of TANF benefits are less than what they were in 1996; 27 states have benefits worth 30% less.85 Each year TANF lifts a smaller proportion of children out of deep poverty.86 In 2015 TANF lifted 349,000 children out of deep poverty, down from 2.5 million in 1995.87 State variation is pronounced. TANF is funded through a block grant that permits wide state variation and studies show that eligibility rules are stricter, and benefits lower, in states with higher proportions of Blacks.88 States may impose work requirements, more stringent application requirements, or strict time limits on TANF.89 Arizona imposed many such restrictions and reduced enrollees by 80% between 2006 and 2017. Enrollees may be sanctioned, which generally involves losing benefits for a multitude of reasons ranging from not searching for work to being late for a TANF appointment. Critics argue that TANF could be improved if state variations were reduced, if income and asset tests were relaxed, if benefits were increased, and if administrative burdens were reduced.90 For the relatively few families who receive TANF, the benefits can be vital. Huang et al. (2012) found that families with children who have disabilities were less likely to roll off TANF and more likely to re-enroll if benefits were interrupted. When poverty-based benefits are slashed, more families may turn to grandparents for help.91

Lack of Federal Benefit Guarantees for Working Families Grandparents in the U.S. provide more care than grandparents in many other countries, and more care than they expect to provide, in part because the US does not guarantee federal benefits that help families juggle work and child care.92 Indeed, the US does not guarantee paid vacation, paid sick days, paid parental leaves, flexible work schedules, or high quality and affordable childcare.

Paid Vacation Lack of paid vacation is a problem for many families. Although 127 countries guarantee paid vacations, the US has no federal vacation policy. Instead, 77% of U.S. workers receive paid vacation benefits through their employer, but access varies markedly by hours and pay.93 Just 40% of part-time workers, compared to 90% of full-time workers have paid vacation days.94 Roughly 52% of workers in the bottom quartile, compared to 91% in the top quartile have paid vacation.95 Access also

Lack of Federal Benefit Guarantees for Working Families

37

varies by race; 41% of Hispanic workers, compared to 69% of white, have paid vacation.96 Studies show that vacations are good for emotional and physical wellbeing and that the lack of vacations may have adverse health effects.97 Among those who have paid vacation, many working parents and grandparents use paid vacation days to care for children who would otherwise need childcare.98 Those without paid vacation time, most often low waged and part-time workers, have one less option for providing childcare coverage.

Paid Sick Leave Though the number of American workers with paid sick days has increased in recent years, lack of paid sick days continues to be problematic for many families. Currently 34 million, or 29% of private sector workers, do not have paid sick days. Because there is no federal law mandating paid sick leave, the distribution of paid sick days varies by state policies, hours worked, and wages. In private sector jobs, 61% of part-time, 69% of the lowest waged, and 48% of service workers do not have paid sick days.99 Of working parents in the lowest earnings quintile, only 24% receive paid sick days, compared to 75% in the upper two earnings quintiles. Access varies by region; in the Midwest, one-third private sector workers compared to one-fifth workers in the West do not have paid sick leave. Access also varies by race and ethnicity; Hispanic workers are 27% less likely than whites to have paid sick leave.100 The lack of federal guaranteed paid sick leave disproportionately affects lower income and part-time workers, leaving them with fewer options for balancing employment and childcare. Workers use sick days to cover their own, their children’s, and their grandchildren’s illnesses. Those without paid sick days often go to work when they or their children or grandchildren are ill, or face time off with lost wages or lost jobs.

Paid Parental Leave Lack of paid parental leave is a substantial problem for many families.101 Though 180 nations offer paid leave to new mothers and 81 offer paid leave to new fathers, the US does not.102 About one-half of US workers have paid employer-provided parental leave.103 The US Family and Medical Leave Act offers 12 weeks of unpaid leave, but one-half of US employees are ineligible, either because their employer has too few employees, they have not worked at that firm for a full year, they do not work enough hours, or the care recipient does not meet the qualifying criteria. Only 39% of workers earning less than $20,000 a year are covered by this law, compared to 74% of those earning over $100,000.104 Others opt out because they cannot afford time off without pay.105 Thus, those with lower incomes, who are single parents, and who are least likely to be able to afford time off without pay, are least likely to be

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able to take the leaves. When parents have no paid parental leave, they often turn to grandparents for care.

Flexible Work Schedules In contrast to many EU nations, the US does not guarantee workers flexible work schedules or locations. Less than one-half of parents are permitted to change the hours or days that they work, and only about one-quarter are able to change their location.106 African Americans and Hispanics are less likely to have access to workplace flexibility. Only 33% of Hispanic and 43% of African American workers, compared to 53% of white workers, have flexible hours.107 Lack of flexibility means that parents cannot work from home, arrive late to work, or leave work early when their children need them. Because accommodating their children’s needs could cause them to lose their jobs, particularly during economic downturns, they may be more likely to call upon grandparents.108

Affordable Child Care The lack of flexible, affordable, high quality childcare is problematic for many families, particularly when children have disabilities and need more specialized care. Childcare is often difficult to find, inflexible, expensive, and of variable quality.109 Among parents with a child under five, 83% reported that finding quality, affordable childcare was a serious problem in their area.110 Over 50% of Americans live in childcare deserts and among Hispanic and American Indian families rates are 57% and 60% respectively. Daycare options vary markedly between rural and urban areas. Fully 59% of rural areas are day care deserts, compared to 56% of urban and 44% of suburban areas.111 Daycare is notoriously inflexible. Those who require childcare during irregular hours or on only a part-time or rotational basis often find that there are few organized childcare options for them.112 Moreover, sick children are not permitted at school or daycare. High quality, affordable childcare for children with disabilities is in particularly short supply. Many facilities do not accommodate disabilities; many remain inaccessible, do not provide needed therapies or assistants, facilitate integrated learning and play, or work cooperatively with parents on problem solving.113 The costs for high quality childcare are rising more sharply than family earnings. In some families, childcare expenses may eclipse rent or home mortgages.114 Low-income families may be eligible for tax credits and subsidized childcare, but only about 15% of those entitled to subsidized daycare actually receive assistance, in part because waiting lists are long.115 Concerns about the quality of childcare are persistent. The National Institute of Child Health and Human Development (NICHD 2007) established standards for care and reported that only 10% of day care settings

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they evaluated provided what they deemed high quality care. What are families to do on snow days, sick days, or when their children need specialized health care that nearby childcare centers are not equipped to provide? With few high quality, affordable options available through the market, many families turn to grandparents for childcare. Grandparents are often coveted sources of child care because they tend to have strong bonds with their grandchildren, be more flexible about hours and locations, and cost little or no money.116 When grandparents live nearby, more than half provide some amount of childcare every week, and one-half of those provide more than 12 hours a week.117 For many families, particularly when children have disabilities, grandparents become the anchor as families face unstable work, inflexible work schedules, and a paucity of benefits for paid vacation, sick days, or parental leaves.118

Methods and Data To assess how grandparents perform the wide array of care work for their grandchildren with disabilities, and its impact on grandparent financial, social, emotional, and physical wellbeing, we conducted in-depth interviews with 50 grandparents who care for their grandchildren. This book is based on our analysis of data from the Grandparenting Children with Disabilities Survey (2014–2018). The grandparents’ and grandchildren’s aliases and important sociodemographic information are listed in Appendix A. Sample Recruitment. To be eligible for the sample, grandparents have to have been caring for their grandchildren with disabilities. Hours and regularity of care work vary widely, from occasional babysitting to full legal guardianship or custody. Because there was no way to draw a random sample, we used two methods to build our non-random, non-representative sample. First, we used snowball sampling beginning in several locations. We asked people we knew to recommend grandparents who met our criteria. Then we used a snowball method of asking each respondent to name at least one other potential participant. We then contacted them via email or telephone to determine whether they wanted to participate in an interview. Second, we posted notices on grandparent webpages for a wide variety of childhood disabilities. We asked grandparents who were interested in participating in interviews to email us. It is a convenience sample of 50 grandparents who provide varying amounts of care for grandchildren who have been diagnosed with disabilities. We do not, and in fact cannot, shed light on sociodemographic trends in grandparenting. Rather we can, and do, provide an in-depth look at the day-to-day experiences of grandparents as they care for their grandchildren and a detailed examination of the impacts of their care work on their financial, social, emotional, and physical wellbeing. Data Collection and Analysis. All of the interviews were conducted by Harrington Meyer, Abdul-Malak and one advanced graduate research assistant. Interviews lasted 45 minutes to two hours. Interviews were done face-to-face in the

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2 Cumulative Inequality and the Welfare State

grandparents’ homes, a coffee shop of their choosing, or by telephone for those who lived far away or preferred to speak by phone. All interviews were transcribed verbatim. The questions, in Appendix C, were all open-ended except some multiple-choice questions at the end. We asked about respondent health, work, marital status, childrearing histories, and grandchildren with disabilities. We asked about the impacts of being middle-aged and caring for grandchildren with disabilities on their financial, social, emotional, and physical health. We assured confidentiality in several ways. All participants signed a standard consent form, approved by the Institutional Review Board of Syracuse University. They were also informed during the interviews that we would protect their identities. In our analysis, we have given each grandparent and grandchild aliases and have been purposefully vague about where they live and other identifiable information. We have changed the names of all other family members to their roles in the family. Therefore, “Jose” became “my husband” and “Susan” became “my daughter.” Otherwise, the grandparents’ words appear here verbatim. Analysis of qualitative data is based on grounded theory; thus instead of testing already identified hypotheses we use interview data to develop themes.119 Respondents provide information about grandparenting children with disabilities and as researchers we code their remarks. Analysis for this book proceeded in four stages. First we read all interviews and identified emerging themes. Second, we recorded key information on spreadsheets, including sociodemographic data, types of care work, and impacts on financial, social, emotional, and physical wellbeing. This step allows us to fully describe the sample and easily identify cases that reflect specific conditions. Third, we pulled excerpts from each interview and gathered them together by theme. Fourth, we organized excerpts by subthemes. This is an iterative process that requires returning to the original interview transcripts repeatedly. The themes developed in this book will be used to identify hypotheses for future testing on data that are nationally representative. Sample Characteristics. We employed numerous strategies to emphasize variation in race, age, gender, marital status, class, geographic location and diagnoses of disabilities. Some were more successful than others. As Table 2.2 shows, the sample was predominantly female, white, and married. Though we had hoped to be able to interview more men, only four grandfathers agreed to be interviewed. Fully 92% of our respondents are white, and the remainder are Black, Hispanic and Middle Eastern. Among our respondents, 60% are married, 16% are widowed, and 16% are divorced. All of our respondents have completed high school, some through GED. Two are working toward PhDs, but their progress is stalled by care work. Of the sample, 18% have no college, 36% have some college, 28% have a BA or BS, and 18% have an MA, MS or more. Annual household income ranges from less than $20,000 per year to over $200,000 per year. Median income was $60,000–$80,000 and the mode was $40,000–$60,000. The grandparents are from several states and all five regions of the United States. Grandparent ages range from 40 to 76, and the median age is 62. In our sample, 36% are coresidential, 16% moved to provide care, 26% retired or reduced employment to provide care, 18% are legal guardians, and 6% are defacto guardians. Some became guardians because their adult children

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Table 2.2 Sample characteristics: percent in each category Grandparent gender Female Male Grandparent race White Black Hispanic Middle eastern Marital status Married Widowed Divorced Single Domestic partnership Education No college Some college BA/BS+ MA/MS+ Incomea Less than $20,000 20,000–39,999 40,000–59,999 60,000–79,999 80,000–99,999 100,000–119,999 120,000–139,999 140,000–159,999 160,000–179,999 180,000–199,999 200,000 plus Two respondents declined to provide income Region of the country Northweast Midwest Southeast Southwest West Residence Coresidential Non-coresidental Moved to provide care

92 8 92 4 2 2 60 16 16 6 2 18 36 28 18 6 16 24 10 12 12 6 2 0 4 4

48 22 14 10 6 36 64 16 (continued)

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Table 2.2 (continued) Retired or reduced employment to provide care Custodial grandparents Legal guardians Defacto guardians Not guardians Adult children struggle with opioid and other drug addictions Diagnosesa Autism Down syndrome ADHD Cerebral palsy William’s syndrome Prader-Willi Asthma DiGeorge syndrome Adjustment disorder Seizure disorders Oppositional defiance disorder Anxiety disorders Brain atrophy Visual impairments Hearing impairments Intellectual, learning disabilities Sensory processing disorder Developmental delay Anti-social disorder Immune deficiency

26 18 6 76 14 36 30 30 20 6 2 4 2 2 6 2 8 2 6 4 4 4 2 2 2

a

Add to more than 100% because some children have multiple diagnoses Source: Grandparenting Children with Disabilities Survey (2014–2018)

struggle with addiction; 14% of our respondents have adult children with opioid and other addictions. Grandchildren with disabilities ranged in age from just three months to 20 years. Some grandparents had multiple grandchildren with disabilities, with two families reporting five grandchildren with disabilities. Some grandchildren had multiple disabilities. The grandchildren’s disabilities included autism, Down syndrome, ADHD, cerebral palsy, Williams syndrome, and other disabilities listed in Table 2.2. We interviewed only the grandparents, thus we are reporting what they told us regarding diagnoses. They may have made errors or omissions. Indeed a few seemed a bit vague about the diagnoses. But overwhelmingly they appeared well informed about the diagnoses of, and symptoms exhibited by, their grandchildren with disabilities.

Notes

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Cumulative Inequality and the Welfare State In a nutshell, U.S. grandparents provide a great deal of grandchild support because the US welfare state does not. Many workers have some benefits through their employers, but these benefits are generally offered to fulltime workers with higher salaries and lengthier tenure on the job. Moreover, employer-based coverage has been shrinking in recent years.120 Paid leaves are good for health and wellbeing, but many Americans do not have them.121 International comparisons reveal that when countries provide more supports that help families balance work and childcare, grandparents tend to provide fewer supports, and when countries provide fewer supports grandparents tend to provide more.122 Reliance on poverty-based programs like SSI, Medicaid, SNAP, and TANF, coupled with the lack of federal guarantees for paid vacation, sick leave, parental leave, flexible work schedules and affordable childcare, causes many families to turn to grandparents for help with grandchildren.123 In accordance with cumulative inequality theory, the remainder of the book demonstrates that grandparents who provide lesser amounts of care and possess greater resources are generally able to balance their responsibilities with more positive and fewer adverse impacts on their financial, social, emotional, and physical wellbeing. But grandparents who are providing a great deal of care despite relatively few resources tend to accumulate adverse impacts on financial, social, emotional, and physical wellbeing.

Notes 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16.

Landes and Settersten (2019), Hitlin and Elder (2007), Elder (2006) and Settersten (2003). Landes and Settersten (2019) and Hitlin and Elder (2007). Crystal et al. (2017) and Ferraro and Shippee (2009). Ferraro and Shippee (2009). Crystal et al. (2017), Ferraro and Shippee (2009), Elder (1974, 2006), Zinn and Dill (2005), England (2005) and Harrington Meyer (2000). Crystal et al. (2017). Family Caregiver Alliance (2019), Pavalko and Wolfe (2016), Harrington Meyer (2000, 2014) and Elder (1974). Family Caregiver Alliance (2019). Family Caregiver Alliance (2019), Pavalko and Wolfe (2016), Folbre (2012) and Harrington Meyer (2000). Mehta and Myrskylä (2017), Harrington Meyer (2014) and Folbre (2012). Mehta and Myrskylä (2017), Harrington Meyer (2014) and Folbre (2012). Harrington Meyer (2014) and Moen and Spencer (2006). Pavalko and Henderson (2006) and Pavalko and Woodbury (2000). Folbre (2004). Casper et al. (2016), Suitor et al. (2015) and Cherlin (2010). Family Caregiver Alliance (2019), Polenick et al. (2017), Pavalko and Wolfe (2016), National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP) (2009), Folbre (2012), Baker et al. (2008), Harrington Meyer and Herd (2007), Pavalko and

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17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31.

32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48. 49. 50. 51. 52. 53. 54. 55. 56. 57.

2 Cumulative Inequality and the Welfare State Henderson (2006), Pinquart and Sörensen (2006), Casper and Bianchi (2001) and Arber and Ginn (1995). Pavalko and Wolfe (2016), Folbre (2012), Glenn (2012), Krantz-Kent (2009), NACCRRA (2008), Bianchi et al. (2006) and Chesley and Moen (2006). Pavalko and Wolfe (2016). Huo et al. (2018), Phillipson (2015), Harrington Meyer (2014), Luo et al. (2012), Igel and Szydlik (2011), Baker et al. (2008), Hughes et al. (2007) and Estes (2001). Elder (2006), Moen and Spencer (2006), Zinn and Dill (2005), England (2005) and Harrington Meyer (2000). Bernanke (2012). Harrington Meyer (2014), Folbre (2012) and Harrington Meyer and Herd (2007). Hogan (2012) and Boyle et al. (2011). Bureau of Labor Statistics (2018), Carrillo et al. (2017), Di Gessa et al. (2017), Coontz (2013), Heymann et al. (2013), Hogan (2012) and Lerner (2010). Pew Research Center (2016), Wang and Parker (2014), Martin et al. (2012) and Lerner (2010). US Bureau of the Census (2017). Coontz (2013), Lerner (2010) and Lauerman (1999). Di Gessa et al. (2017). Bureau of Labor Statistics (2017), Carrillo (2017), Coontz (2013) and Lerner (2010). Bureau of Labor Statistics (2017). Carrillo et al. (2017), Parish et al. (2015), Heymann et al. (2013), Folbre (2012), Luo et al. (2012), Igel and Szydlik (2011), Harrington Meyer and Herd (2007), Hughes et al. (2007) and Chesley and Moen (2006). Parish et al. (2015) and Igel and Szydlik (2011). Harrington Meyer and Kandic (n.d.), Harrington Meyer (2014) and Harrington Meyer and Herd (2007). Di Gessa et al. (2017) and Igel and Szydlik (2011). McFarland et al. (2018), Kraus (2017), Harrington Meyer (2014), Houtrow et al. (2014) and Moynihan and Herd (2010). Parish et al. (2015), Hogan (2012) and Leiter (2012). Center for Budget and Policy Priorities (2018) and Burkhauser and Daly (2013). Social Security Administration (2018). Center for Budget and Policy Priorities (2018). Social Security Administration (2018). Moynihan and Herd (2010). Herd and Moynihan (2019). Moynihan and Herd (2010). Kaiser Family Foundation (2018c), Center on Budget and Policy Priorities (2017a, b), Hogan (2012), Leiter (2012) and Moynihan and Herd (2010). Inserro (2019) and Kaiser Family Foundation (2018d). Inserro (2019). Long et al. (2016). Musumeci and Foutz (2017a, b) and Shea et al. (2019). Rudowitz et al. (2019a, b). Kaiser Family Foundation (2018a, b, c). Musumeci and Chidambaram (2019) and Musumeci et al. (2019b). Musumeci and Chidambaram (2019) and Musumeci and Foutz (2017a, b). Rudowitz et al. (2019a, b). Kaiser Family Foundation (2018d). Musumeci et al. (2019c), Rudowitz et al. (2019a, b), Kaiser Family Foundation (2018a, b, c), Musumeci and Foutz (2017a, b) and O’Malley-Watts et al. (2016). Musumeci and Chidambaram (2019) and Kaiser Family Foundation (2018a). Musumeci and Chidambaram (2019) and Bruder (2010).

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58. Kaiser Family Foundation (2018a). 59. Eiken et al. (2018), Lewis et al. (2018), Thach and Wiener (2018) and Reaves and Musumeci (2015). 60. Kaiser Family Foundation (2018b). 61. Okoro et al. (2018). 62. Medicaid.gov (2017). 63. Kaye (2019), Kaiser Family Foundation (2018a, b), Okoro et al. (2018), Chien et al. (2017), Musumeci and Foutz (2017a, b), Seligman and Darling (2017), Lezzoni et al. (2013), Hogan (2012), Leiter (2012), Musumeci (2011), Drainoni et al. (2006), Lezzoni et al. (2006) and Long and Coughlin (2004). 64. Carr (2019), Holgash and Heberlein (2019) and Decker (2012). 65. Herd and Moynihan (2019) and Rudowitz et al. (2019a, b). 66. Harrington Meyer and Stevens forthcoming, Candisky (2019), Hirschi et al. (2019), Whittle et al. (2017), Hyman (2016), Hogan (2012) and U.S. Government Accountability Office (2008). 67. Rudowitz et al. (2016) and Moynihan and Herd (2010). 68. Kirzinger et al. (2019). 69. Kaiser Family Foundation (2018a, b). 70. Center on Budget and Policy Priorities (2019) and Center on Budget and Policy Priorities (2018). 71. Sonik et al. (2016). 72. Center on Budget and Policy Priorities (2019) and Center on Budget and Policy Priorities (2018). 73. Center on Budget and Policy Priorities (2019) and Center on Budget and Policy Priorities (2018). 74. Center on Budget and Policy Priorities (2019). 75. Center on Budget and Policy Priorities (2019). 76. Center on Budget and Policy Priorities (2018). 77. Center on Budget and Policy Priorities (2018) and Moynihan and Herd (2010). 78. Center on Budget and Policy Priorities (2019). 79. Coleman-Jensen et al. (2018). 80. Coleman-Jensen et al. (2018). 81. Silverstein and Lee (2016), Harrington Meyer (2014), Luo et al. (2012) and Baker et al. (2008). 82. Floyd et al. (2018). 83. Floyd et al. (2018). 84. Center on Budget and Policy Priorities (2019). 85. Center on Budget and Policy Priorities (2019). 86. Center on Budget and Policy Priorities (2019) and Floyd et al. (2018). 87. Floyd et al. (2018). 88. Floyd et al. (2018). 89. Center on Budget and Policy Priorities (2019) and Floyd et al. (2018). 90. Center on Budget and Policy Priorities (2019), Herd and Moynihan (2019) and Floyd et al. (2018). 91. Center on Budget and Policy Priorities (2019), Silverstein and Lee (2016) and Baker et al. (2008). 92. Harrington Meyer and Kandic (2017), Harrington Meyer (2014), Igel and Szydlik (2011) and Baker et al. (2008). 93. Maye (2019). 94. Maye (2019). 95. Maye (2019). 96. Glynn (2012b). 97. Glauber and Young (2015).

46 98. 99. 100. 101. 102. 103. 104. 105. 106. 107. 108. 109. 110. 111. 112. 113. 114. 115. 116. 117. 118. 119. 120. 121. 122. 123.

2 Cumulative Inequality and the Welfare State Glynn (2012a, b) and NACCRRA (2008). Boesch (2018), Glynn (2012a, b) and Williams et al. (2011). Boesch (2018). Harrington Meyer and Kandic (2017). Heymann et al. (2013). Glynn (2012b). Heymann (2013). Heymann (2013), Folbre (2012), Lerner (2010), Han et al. (2009) and Armenia and Gerstel (2006). Glynn (2012b). Glynn (2012b). Harrington Meyer (2014). Bureau of Labor Statistics (2018), Carrillo et al. (2017), Coontz (2013), Heymann et al. (2013) and Lerner (2010). Malik et al. (2018). Malik et al. (2018). Presser (2003). Hogan (2012), Gaines and Curry (2011), Boyle et al. (2011), DeVore and Bowers (2006) and Booth-LaForce and Kelly (2004). Cohn (2013), Malik et al. (2013) and Lerner (2010). Malik et al. (2018) and Lerner (2010). Harrington Meyer (2014), Folbre (2012) and NACCRRA (2008). NACCRRA (2008). Carrillo et al. (2017). Glaser and Strauss (2017), Bernard et al. (2016), Russell et al. (2016). Glynn (2012a, b), Harrington Meyer and Herd (2007), IWPR (2007), Mezey et al. (2002). Boushey and Glynn (2012). Igel and Szydlik (2011). Harrington Meyer and Kandic (2017).

Part I

Caring for Grandchildren with Disabilities

Chapter 3

Love, Laughter, and Special Relationships

Grandparenting children with disabilities often creates special moments of love, joy, and laughter. Most of the grandparents we interviewed talk about wonderful times with all of their grandchildren, and with their grandchildren who have disabilities in particular. Many see grandparenting as one of life’s greatest joys. They emphasize how much mutual love and admiration they have with their grandchildren. Many have a lot of fun and share a lot of laughs. Though they do so to differing degrees, some appreciate how valuable their care work is for their families. A few say that disabilities have brought their families closer together. Nearly all treasure just how close they, and sometimes their partners, are with their grandchildren who have disabilities. They treasure their special relationships. It is important to remember that grandparenting is not for everyone. It can be hard, demanding, exhausting work. Some have no aptitude for, or interest in, caring for grandchildren. In this book, we have interviewed only those grandparents who are indeed providing care for grandchildren with disabilities. There would be another book, a different book entirely, about grandparents who have little or no contact with their grandchildren with disabilities. Here all of the grandparents are providing care, at various levels and amounts. Care work is a labor of love. The grandparents we interviewed tended to emphasize the easy, rather than the more difficult, times. They describe how the many challenges come with rewards of immeasurable value.

Rewards of Grandparenting Children with Disabilities Many grandparents exclaim just how much they love their grandchildren and their grandchildren love them back.1 About 70% of older Americans have at least one grandchild, two-thirds of grandparents see a grandchild at least once every two weeks, and more than 80% are in touch regularly through email, Skype, phone, or snail mail.2 Many grandparents have warm, close ties with their grandchildren and spend time sharing advice, family traditions, and family histories.3 Spending time © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_3

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with grandchildren tends to improve emotional health, keep grandparents feeling younger, and provide a renewed sense of purpose.4 Grandparenting facilitates special relationships between grandparents and grandchildren. Many grandparents perceive affection as one of the best parts about being grandparents. Mansson’s (2016) qualitative research reveals that saying and hearing “I love you,” enjoying hugs and kisses, and giving social support and gifts are among the most cherished aspects of being a grandparent. Despite occasions of tears and frustrations, many grandparents find that moments spent with grandchildren are filled with laughter.5 This mutual attraction between grandchildren and grandparents may be amplified when grandchildren have disabilities. But grandparent and grandchild relationships may also be strained, particularly when grandchildren need a lot of care.6 Cumulative inequality theory suggests that when grandparents provide a great deal of care, and when tensions mount, grandparents with the fewest resources may be left feeling the most overwhelmed, exhausted, and depleted.7 Nonetheless, studies suggest that many grandparents strive to accentuate the positive, rather than the difficult, times. A recent study of grandparents of children with autism found that despite moments of frustrations and despair, many grandparents expressed unadulterated and reciprocal love for their grandchildren.8 A study of Australian grandparents found that grandparents frequently speak of the special place that their grandchildren with disabilities hold in their lives and in their hearts.9 While some research reports strained relationships, most studies report that grandparents form close bonds with their grandchildren.10 Indeed, many grandparents appreciate how special their relationship is for their families, and some report that disabilities have brought their families closer together.11 Geographical proximity helps to strengthen these bonds; those who live closer tend to feel closer. They see each other more regularly and as a result their bonds are tighter.12 Strength of relationships may also be shaped by time since diagnoses. Lee and Gardner (2010) found that grandparents’ reactions are similar to parents’ when their children are diagnosed with disabilities. Both initially tend to experience grief, stress, and despair but over time come to terms with diagnoses and focus on family adaptation, cohesion, and love. Indeed, many grandparents and grandchildren with disabilities maintain long lasting and loving relationships.13

Love and Laughter Within the context of just how much work it may be to care for grandchildren with disabilities, nearly all of the grandparents we interviewed talk about how much love they feel for their grandchildren. They recall times of great joy and pleasure. They talk about laughing together. Many spilled happy tears during our interviews while telling us of some of their fondest memories. In addition to describing a wide array of care, including assisting with bathing, feeding, dressing, carrying, teaching, homework, and medicating, grandparents describe fun times with their grandchildren who have disabilities. Whether they are at home or at parks, stores, museums, restaurants,

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fairs, festivals, movies, or schools, they have a lot of happy times. Their relationships are special and they value them highly. We Have a Good Time Together Tessa focuses on how much fun she has with Leila. She says that spending time with Leila raises her spirits and improves her life. Tessa is a 61 year-old, white, divorcee, who attended some college. She has two children and one grandchild, Leila, a six year-old Black child with Down syndrome. They share a house, which Tessa bought when she retired from the military. Tessa lives upstairs and Leila and her mother pay rent to live downstairs. Tessa watches Leila nearly every day after school, whenever she is sick and her mom needs to work, and other times as well. She says they get along very well, particularly when they put on the music and dance. Their only rough times come when it is time to say goodbye and Leila does not want to end her time with grandma. Most days are pretty easy. We have a good time together. There are days when she is defiant and pretty bossy. She is the only child. She is extremely cute and she knows it. There is a devilish bit to her. If she wants you to do something, and you say no, she will grab you and pull you up. . .When she has to go home, she will hug and kiss and then hit or kick. When she has to leave, she will hit or kick at the door. I know that she is frustrated that she has to leave and does not want to.

Tessa and Leila go everywhere together, including stores, museums, festivals, and anywhere that looks fun. When they are out, she said everyone warms quickly to Leila, in part because she is so social. We live in a small town and most people say hello to her. She is very cute, people stop and say how cute she is. At the grocery store, the seafood lady will let her pick a lobster, and the lady will pull it out for her to look at it. She will go up to people and hug them.

Tessa spends as much time as possible with her granddaughter, and enjoys it immensely. I don’t treat her like a kid with special needs. She is my granddaughter. I don’t see her as anything else. My daughter fostered her from seven months old and then adopted her at three years. We chose her, she is ours.

Throughout the interview, as I steer the conversation to a wide variety of subjects, Tessa steers it back to her main thought. I love this little girl. I don’t even know how to explain it! She brings so much to the family. This big smile, a hug, and a kiss. It just raises your spirits. This year has been difficult, my mom and sister passed away, and she has been the light in the whole thing. I feel great. I always feel like I’m 20, in my head. I just have fun with her.

I Just Love Them to Death Love for her grandchildren with disabilities was also the main topic when we interviewed Colleen. She loves how much she loves them, and how much they love her back. Colleen is a 62 year-old white, married, mother of four and grandmother of nine who attended some college and works full-time. Two of her grandchildren, seven year-old Sam and two year-old Kit, have Down syndrome. She is particularly close to them both.

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3 Love, Laughter, and Special Relationships We love each other immensely. Sam is not very smart, I’m not sure how to say that, but he is a very loving boy. I like having conversations with him. I love everything about him. I just love them to death. Kit is two, not walking yet, not really talking a lot. She is a very adorable, cute little thing. I love all my grandkids. But these two, I just love everything about them. She loves to hug and be hugged. She loves sitting on my lap. She loves when I sing to her and when I play hand games with her. She loves when I read books.

I Just Love Being Their Grandmother Kelly describes a big mix of love and fun and joy. Kelly is a 72 year-old, white, parttime school nurse, who attended some college. She is a married mother of three, and grandmother of six. Kelly’s seven year-old granddaughter Maya has cerebral palsy. Maya recently underwent an extensive surgical procedure to improve her mobility. Kelly finds so much joy from seeing Maya’s improvement. I just love being their grandmother. We had so much fun going to Disney. Just staying with the kids is so much fun. With Maya the thing that brings us the most joy is watching the big improvement since the surgery. The days after the surgery she was climbing the wall at the gym of the hospital.

He Is a Darling Similarly, Carole talks about how much she and her grandson love each other. Carole is a 74 year-old white, retired, mother of a daughter who is diagnosed with a learning disability and bipolar disorder. Carole is also a grandmother of four and has custody of three of the grandchildren. She has been working on her PhD but stalled before completion. Her grandson, Nico, 11 years old, is on the autism spectrum. Carole recounted many instances where her age makes it really hard to keep up with Nico. Nonetheless, she loves how he showers her with love. He is a pretty neat kid. He is a darling. He would hug me and tell me that he loves me. He is a real sweetheart that way.

She Is an Unlimited Fountain of Love Even when providing care is tumultuous, Jacki and her grandchild express their mutual love. Jacki is a 65 year-old, white, married, mother of four and grandmother of six, who completed a BS. Jacki and her husband adopted her nine year-old granddaughter, Mona, who is diagnosed with ADHD. Her middle daughter has four children, including Mona, and she has lost custody of all four of them due to mental health issues and drug addiction. Jacki finds it hard to be a full-time mother after being an empty nester for a few years. Mona’s love has been what fuels her with energy and makes the sacrifices worth it. My best memories are every night when she comes in and says goodnight. Every morning, it’s the same, even if we had the worst morning of fighting I still get goodbye and I love you. She will always stop to hug me and tell me she loves me. She is an unlimited fountain of love

Ava and I Laugh Together, She Is Very Affectionate, We Have Fun Together Bree emphasizes how affectionate she and her granddaughter are with each other. Bree is a 76 year-old, white, divorced, mother of two and grandmother of seven, who has an MA. Bree works part-time and lives just 15 minutes from her granddaughter Ava, age 13, who has Down syndrome. She cares for all of her grandchildren

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according to a constantly changing schedule. She spends a great deal of time with Ava, taking her to swimming lessons and therapies, helping with homework and reading, and playing games like Sorry. She says she feels fortunate that Ava is so high performing and is able to understand so many things. She always greets me with a “Oh, Grandma!” and runs to me. She is very simpatico, sweet. Ava and I laugh together, she is very affectionate. We have fun together. We cook things together, she helps me make Crazy Cake. She offers to help out a lot, that’s good.

Caring for all of her grandchildren is one of life’s greatest joys and most certainly the highest priority for Bree. The kids, the grandkids, always come first. I feel fortunate that I have been here to watch them grow. And I love kids. . .They are so open and have such great imaginations, and they surprise you, they see the world so differently.

She’s Pretty Entertaining Joyce laughs a lot when she talks about spending time with her granddaughter, and she says they laugh a lot whenever they are together. She particularly enjoys all of Mindy’s “quirkiness.” Joyce is a 61 year-old, white, retiree who attended some college, and has two children and one coresidential grandchild, Mindy, age 13. Mindy’s mother was declared unfit and her father has custody, but Joyce and her husband care for Mindy around-the-clock. Mindy has DiGeorge syndrome, also called 22q11.2. Her main symptoms include seizures, learning disabilities, and difficulty speaking. She needs constant supervision and assistance with most tasks. Joyce laughs a lot about their time together, even about Mindy’s “OCD” need to have her shoes lined up just so, or her recent tendency to swear and call Joyce “dumbass.” She says every day together is special. You’d almost have to know Mindy because every day is joyful. You know, she does something every day to put a smile on your face.

In fact, nearly everyone seems to enjoy Mindy’s company. Joyce proudly recounts a time when visitors asked if they could return to spend time with Mindy. She’s pretty entertaining. I had six girls over for dinner and Mindy was here, and one of them called her something kinda cute, they called her quirky. She has a quirky personality. Yeah, she does. And, another one of them said, “Can I take her for the day?” So, she’s going to take her and spend time with her. . .So yeah, they all love her. When they got here, she took their coats and hung them on the bench and put their purses on the bench.

He Wanted Me to Read to Him all the Time Even though her grandson prefers solitude, Hanna says she spends a lot of time with him. Through trial and error, they have arrived at a mutually agreeable pastime: reading. It brings them both great joy, albeit a quiet joy. Hanna is a 71 year-old, middle-eastern, retired, married, mother of one and grandmother of two grandsons. She has a BS. Danny, the older grandson, is 19 and has been diagnosed with autism, and struggles mostly with social interactions. He was a good kid. He was very calm. He never had, you know with autism; they talk about tantrums or anything. He did not have that. He was very much, I would say, a loner. He would come from school, go into his room, get out his books and puzzles, and he wanted me to read to him all the time

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Special Relationships with Grandmothers All but four of the grandparents we interviewed are grandmothers and many of them talk about forming close bonds with their grandchildren with disabilities. Many emphasize the good times and minimize the more challenging times. They are well aware that their grandchild care provides much needed assistance for their adult children and their families. Nearly all of them spoke of love, strong bonds, and a special closeness with their grandchildren who have disabilities. He and I Have Created a Very Tight Bond Betty is one of many grandmothers we interviewed who describes a very close relationship with grandchildren who have disabilities. Betty is a 63 year-old, divorced, retired, mother of two and grandmother of two, who has a BA. She lives near her five year-old grandson Carl, who has mild Williams syndrome. She retired early and moved to within a mile of her daughter and her family so that she could help with Carl. She sees him as often as possible, usually several times per week. Betty enjoys a wide range of activities with her grandson and treasures how good that makes her feel. He and I have a very tight relationship. We enjoy each other’s company. We just like to be together, play go to park, play games, eating dinner, watching TV. I have been there with him and for him as much as possible since he was an infant. He is typically glad to see people, but my daughter says I’m special to him. More special than anyone but her. The minute I walk in the door he is just like, “Gramsie is here! Mom, Gramsie is here!” He has four grandmothers and we have four names. I’m Gramsie. He is just thrilled when I walk through the door. At times, he is grumpy and sad and I can bring him out of it.

Betty finds caring for Carl very meaningful and she is grateful she has been able to spend so much time caring for him and his brother. The sweetness of their bond, she feels, is directly linked to the sweetness of Carl’s disposition. Our bond is special, it is very important to me, and it improves my life. Things would be so different for me if he were not like he is. He is a very sweet child. We get along really well. I was single and comfortable and I could do whatever I wanted to do, and I wanted to retire early and move here to help with my grandsons. To help my daughter, to be of assistance. We are very blessed.

We Have a Very Special Relationship Anna also describes a close relationship with her grandson. Anna is a 66 year-old, Black, mother of two and grandmother of six, who completed a BA and took several additional classes as well. She lives one and one-half hours from her seven year-old grandson Jason, who has Down syndrome and is being tested for autism. She spends more time with Jason than any of her grandchildren and she says this has led to a special bond between them. We have a very special relationship. A lot of the time, I stay in my granddaughter’s room and he will come look for me. And when I left last time he was still asleep. When he woke up he came right to my room to look for me. Makes me feel good that he wants to be around me, that they want to be around me.

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You Build a Special Bond with Your Grandchildren Marina feels a close connection with all of her grandchildren. Marina is a 60 year-old, white, widowed, mother of three and grandmother of five, who attended some college and works part-time. She feels fortunate that she is able to spend time caring for Carly, age two, who has Williams syndrome, and her other four grandchildren. I feel lucky I get to care for my grandkids, all of them; it is an honor and a privilege. It is challenging and rewarding. Not something everyone can do. But you build a special bond with your grandchildren.

I Didn’t Realize How Attached We Would Be to Her When We First Found Out The strength of the relationship between Jill and her granddaughter is fueled in part by concerns about how much time they will have together. Jill is a 48 year-old, white, married, mother of three and grandmother of three, who attended some college. Her youngest granddaughter, Minnie, age three months, lives just 15 minutes away and is diagnosed with Down syndrome, a heart defect, and an intestinal disorder. Minnie’s health is precarious and they are unsure about her life expectancy. Jill works full-time from home and also cares for Minnie around-the-clock several days a week when Minnie’s mother is at work. Minnie has already undergone several surgeries and several more are on the docket. Jill spends as much time with her as possible. I think I’m definitely more emotional with her just because the fear. We don’t know how long she’s going to be here. We don’t know how things are going to go, that kind of thing. Definitely. My love for her has definitely grown. I didn’t realize how attached we would be to her when we first found out, definitely. I almost feel bad for the other grandkids, just because I spend more time with her. She’s here all the time.

Jill is particularly close to Minnie and wishes they could all live under a single roof. If her house was big enough they would probably already do so. I absolutely love her to death. I would give up everything to spend the day with her, so. Honestly, I think at this point, the only thing that would make things easier is if we were in the same house. You know, if my daughter was here, but unfortunately, this house isn’t big enough for that. Yeah, that would be really the only thing I could think of as far as that goes. It’d just make life easier on all of us.

I Love This Little Boy Like Nothing in the Whole Wide World Connie is also very close with her grandson. His accomplishments are hard-earned and bring her tremendous joy. Connie is a 57 year-old, white, divorced, retired, high school graduate. She is the mother of three, all of whom were diagnosed with disabilities, and grandmother of one, Andy, who is two and one-half and diagnosed with cerebral palsy. Andy and his mother live with Connie. She cares for Andy about ten hours a day Monday through Friday and then sits for him occasionally on evenings and weekends. Because he is not mobile, she takes care of his every need including feeding, dressing, bathing, and playing with him. She would not have it any other way. I love this little boy like nothing in the whole wide world, and would give anything so he doesn’t have what he has, but that only makes him more special to me. Yeah. I love being with him, I just love taking care of him and watching him, you know, do different things. Like, today, he started, with the OT, they were working on him holding stuff. He was

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3 Love, Laughter, and Special Relationships holding it with the little brace on his hand, and he actually banged the toy on the tray for the first time. And that’s a big deal! That’s the biggest deal.

Connie happily recounts a recent milestone that Andy achieved, and how the incident moved her to tears. The other day, he had veggie straws and he actually brought the veggie straw to his mouth and bit it. I thought I was going to cry my eyes out! It was beautiful! You take that stuff for granted, you really do until you have a child that doesn’t easily do that kind of stuff and then you’re like, yes! He finally did it! I don’t regret nothing about him at all.

Though there are days when Andy cries from pain all day, and Connie feels she might cry as well, she treasures the days when she gets him laughing. When he gets to laughing, that is the sweetest sound to me in the whole wide world. And we will laugh sometimes for an hour, and I sometimes don’t even remember what we’re laughing at. And, so, that’s kind of nice when you have that, whenever other things that have been going on throughout the day and maybe one of them was a bad thing, you kind of forget that when you have this sweet little child laughing at you. And he’s just got the cutest little laugh. And, he laughs at some weird things too, let me tell you.

Connie says she never imagined she would have a grandchild with disabilities, and occasionally wishes she could just take Andy out with her for something as simple as a cup of coffee. But because his medical equipment weighs more than she can lift, she cannot. Most of the time, she does not give it a second thought. I never dreamed that it would happen to her. And it did, and that’s just the way it is. God gave her this special child and she’s learned to deal with it and so have I. . . Every now and then you go, if only he was born normal then I wouldn’t be doing this all day long. I think it’s a normal thing to feel that way, you know? I want to go to Starbucks and have a cup of coffee and not have to go, oh wait, I can’t take him with me. So, yeah, they’re rare, but I’ve just gotten used to this routine of just taking care of him and now he is before whatever, whatever I want. It’s nothing compared to what he needs and he wants. His needs and wants are way above mine.

And It Puts a Smile on Your Face Because He’s Caring For some grandparents, an abundance of difficult days makes the easy days that much sweeter. Denise is a 55 year-old, white woman who attended some college, but has been unemployed since she lost her job 11 years ago. She lives with her only son and grandson and provides about 50 hours a week of care for her grandson, Nelson, age ten, who has moderate autism and ADHD. She says Nelson has a lot of bad days, where he is defiant and hot blooded and prefers to keep to himself. But on good days, he will ask how she is doing, or carry her plate to the sink after dinner without being asked. On good days, there may even be hugs and kisses. When he’s just loving and caring, he’ll give you hugs. That’s not something Nelson gives away very often. You can’t touch him. You’ll have to ask or he’ll ask. And, it’s not like a typical hug. Hugging to him is laying his head on your shoulder or leg or arm. It’s not a really like a tight embrace. It can be, but it doesn’t necessarily mean that. Sometimes he’ll ask for a kiss and that means he’ll kiss you somewhere on the body! And it puts a smile on your face because he’s caring. He’ll ask you how you feel. You know? It’s a good day. And, he’ll do what you ask him to do.

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My Grandson Just Happens to Have Some Extra Needs For some grandmothers, caring for grandchildren with disabilities is just part of the job description. They expect to provide a lot of care. Care work may include assisting with feeding, dressing, bathing and a wide variety of intensive medical care. Some grandmothers take these tasks in stride. Doris is a 55 year-old, white, retired, mother of two, step mother of four, who attended some college. She has four step grandchildren for whom she does not provide care, and one biological grandchild who lives just a few minutes away for whom she provides extensive care. John, age 11, has numerous disabilities including atrophy of the brain, LennoxGastaut seizures, and visual and hearing impairments. Doris, who has multiple sclerosis, routinely cares for him and assists with his feeding tube, ventilator, tracheotomy, and catheter. She spends time with him almost daily and treasures their time together. I just want to be his grandma. I think that to be a grandmother of a special needs child, a disabled child that needs extra caregiving, to me that goes along with being a grandmother. If you had a grandchild who didn’t have disabilities, and they happen to wreck on their bicycle, and they skin their elbow, you would put a band aid on it. You know, you’d put some peroxide on it and a band aid on it. That’s caregiving. My grandson just happens to have some extra needs, needs some extra help with that. To me, that’s just part of being a grandmother. It just goes along with the job. It goes along with the title.

Advocating for, and taking care of, a grandson with so many health needs is complicated and challenging, but for Doris what matters most is quite simple. If John is not in pain, neither is she. I love John no matter what. . . I want things to be easy for John. I don’t want John to be in any pain. That’s kind of my main concern. And, as long as he isn’t, then I’m okay.

He Looked at Me and Smiled and Did a Happy Dance Though their relationship has always been special, Anna had to wait seven years for that first smile. And it was all the sweeter for the wait. Anna says that because Jason has Down syndrome, and many symptoms of autism, he has limited communications. He is completely non-verbal. He understands most of the time what you are saying to him. But a lot of times he will not respond. If you call him, most of the time he will not come. At school he is starting to recognize numbers. But he is not reading and not speaking. He will take a book and look at the pictures, and he likes that a lot, but there is no reading. He likes to have you read to him as well.

With age, Jason has grown more communicative, particularly when food is involved. Anna appreciates every moment of communication they manage. If you call him, now he will turn and look at you. Before he would not. Now he will look at you, but he will not come. Unless you have food. Then he sees it is time to eat and then he will come to eat.

After years of very little communication, Anna is really enjoying Jason’s increasing ability to express enthusiasm when he greets her It is great to see him progress. Last time I went there, I opened the door and he looked at me and smiled and did a happy dance. It was so heartwarming. Usually I would come in and he

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3 Love, Laughter, and Special Relationships would look at me, but not respond. But this last time I got a huge smile and a little jig thing. It almost made me cry.

When I Had My Surgery, We Had This Routine The strength of the bond between Maria and her grandson rests on their empathy. She is very astute about tending to his needs and he, at least at times, is just as astute about tending to hers. Maria is a 71 year-old, Hispanic, retired, divorced, mother of two and grandmother of three, who completed high school. Maria enjoys her role of grandmother. She feels immense pleasure spending time with her grandchildren. She talks about the special relationship that she has with her grandchildren, especially with 12 year-old Marco who is diagnosed with Prader-Willi syndrome and asthma. Sometimes I would read to him in the evenings when I stayed with them. When I had my surgery, we had this routine. He took out one of his favorite movies, around eight o’clock; he would turn off the light and makes it dark. He said, "Mama, you are ready for the movie?" and I say, “Sure, sure.” We made the bed on the sofa. He lay on this side and I would lie on this side. He would watch the movie until he falls asleep.

I Enjoy Her Company Some grandmothers who have become widows talk about how their relationships with their grandchildren have helped them cope with bereavement. For example, since Maureen’s husband passed away a few years ago, she finds that Madge’s companionship helps her with the loneliness. Maureen is a 76 year-old, white, retired grandmother of seven and mother of four, who has a BS. Madge, who is 20 years old, is on the autism spectrum and Maureen spends a great deal of time with her. Their time together is relaxed and easy in part because Maureen emphasizes discipline. I just want you to know that I don’t treat Madge differently than my other grandchildren. I enjoy her company. She never talks back to me. She does what I ask her. She is fun to be around. She can entertain herself much more than the others can. The others always want to be entertained. I found her easy going.

Maureen enjoys spending time with Madge. She finds that being a grandparent is a lot easier than being a parent since Madge tends to listen to her while aggravating her parents. One of the most challenging things is that she gets very obsessive about something and she keeps going on about it over and over again. That frustrates her mother but they have to be patient. She’ll say something ten times. She’ll repeat it over and over again. When she does it with me, I say “Madge I already told you once. Be quiet.” And she’ll start to laugh and stop. I think with her mother she’ll continue on and I think that’s a typical mother-daughter relationship. I think grandparents can get away with a lot more than parents can.

I Know We Saved Their Lives Bonds are often strengthened when grandparents take custody and then provide care around-the-clock. In some cases, grandparents provide care that is literally lifesaving, and life altering, for their grandchildren. Kim is a 59 year-old, white, mother of three and stepmother of four, who attended some college. Her stepdaughter, who has bi-polar disorder and is addicted to heroin, has no contact with any of her five

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children. Kim and her husband are sole legal guardians of two: Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. Kim and her husband have depleted their physical and emotional health, their finances, and their family ties, but they feel very close to these grandchildren for whom they have worked so diligently to care. She hopes her grandchildren will speak out about the hardships families are facing due to the opioid crisis. I see them both coming out of this very successful. . . I know we saved their lives. If we had said no, these kids would be statistics, they would probably both been drug addicts or foster kids in terrible situations. They have a chance and they will do well. They will be well adjusted and more savvy because of all they have been through, all their struggles. And they can speak out and help others who are going through this opioid epidemic. I’m speaking out and I have told Izzy, you have a lot to share, to say, to help others. This is not going away and we need to provide tools and hope for families.

She Gives Me Hugs and Kisses So That’s Very Nice For many grandparents, that special relationship with grandchildren provides so much joy. Rachel is 61, single, and lives with her daughter and two grandchildren. Rachel’s 16 year-old granddaughter, Sandra, is on the autism spectrum. When Sandra was younger, she did not like to give hugs. As she is getting older, she is becoming more affectionate, and that brings much joy to Rachel. Well she’s getting now to the point where she’ll actually hug me and kiss me. She has a thing where she doesn’t like people to touch her. So that’s what I enjoy now. She gives me hugs and kisses, so that’s very nice.

Rachel is elated that she gets to see Sandra and her other grandchildren every day; she has developed a close bond with them. Having my grandkids around. That’s the best thing about being a grandparent. Having my grandkids here. Spending time with them doing things with them especially now that they’re older

Special Relationships with Grandfathers Though we wanted to interview equal numbers of grandmothers and grandfathers, we had difficulty finding grandfathers who wanted to talk with us. One exception is David, who talks about a very close relationship with his grandson. In other cases, the grandmothers we interviewed talk about how close the relationship is between their husbands and their grandchildren. In these families, grandma may well perform most of the care work, but it is grandpa who sparks the biggest reactions when he walks into the room. I Just Became Very Close to Him Because David agreed to be interviewed, he could tell us in his own words about the strength of his relationship with his grandson. David is a 75 year-old married, white, father of two and grandfather of five, who has an MA. David’s grandson, Bill, a twin, has cerebral palsy. David has a tight bond with Bill and calls him every night before

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going to bed. They love to take fishing trips together. When Bill was younger, David used to provide more physical assistance to him. However, since he has grown older and become more independent, they have developed more of a friendship and go on outings together. I just became very close to him. We just spent this weekend together; we were fishing up north. He caught as many if not more fish than the adults caught.

Even though David finds it quite difficult to keep Bill entertained while they spend time together or to find appropriate toys that are geared towards kids with disabilities, he treasures their closeness. I think also getting him gifts, things like that, are challenging because you don’t want to buy him anything he can’t handle but you want him to be as normal as the other kids. There aren’t a lot of things that are geared for kids with special needs. We’ve revamped some.

He Was Everything to Her and We Were Such a Happy Family We heard about most of the other special relationships with grandfathers through the grandmothers we interviewed. For example, Candi describes the mutual love and devotion between her husband and her granddaughter. Though he was not the biological father or grandfather, Candi’s second husband became a custodial grandfather and helped Candi raise her granddaughter. He became the light of her life and when he died, both Candi and her granddaughter entered a very dark phase. Candi is a 61 year-old, white, widow with one daughter and two granddaughters, who completed high school. Her oldest granddaughter, Aly, age 12, had low birth weight due to maternal and paternal drug and alcohol use. Candi, and her husband sued for custody of Aly, who is diagnosed with ADHD and asthma, shortly after her birth. Aly lived with Candi and her second husband. He helped a lot with Aly. My husband loved my daughter, she was his daughter too. And he loved my granddaughter, she was his. The sun rose and set with her. He was a hands-on dad. So he did everything. I would go to work at 5:30 am and he would get her up and fix her hair and feed her breakfast and take her to school She was his too. He was never able to have kids, so this was his child and his grandchild.

When he died it was difficult for Candi and Aly. Financially they were in ruins and had to file bankruptcy. But even more devastating was the emotional loss. She was a happy child up until my husband died and then she felt her whole world had been taken from her. He was everything to her and we were such a happy family. To lose him, it really did change the whole dynamics of her life.

Though her physical, financial, and social well-being are depleted from losing her husband and providing so much custodial care to Aly, she feels blessed. We are the ones who are blessed, my husband and I, from the moment we held our granddaughter. To see that tiny four-pound baby, she was our blessing.

He Has a Special Bond with Ray Ina has been pleasantly surprised by how close her husband and grandson have become. Ina is a 46 year-old, white, mother of two and grandmother of two, who completed a BA and took additional courses as well. She worked as an RN for

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20 years, but hurt her back on the job and following the corrective surgery her leg became paralyzed. She is medically retired and receives disability benefits. She lives just five minutes from Ray, age three, who has Down syndrome. She is unable to watch her grandchildren on her own since the surgery, but she and her husband of 27 years watch the kids together regularly. I used to watch Ray all the time by myself, after work or on weekends, but now with my back and my paralyzed leg it is hard to do it by myself. My husband and I take him after work and on weekends, sometimes. Easiest baby I have ever seen in my life. Easier than my kids ever were. His intuition is amazing. He knows I’m hurt. He goes and gets ice for me. And he does not ask me to pick him up, ever.

Though she values the closeness of her relationship with Ray, Ina says it is her husband who has the closest relationship with Ray. I’m surprised, I was not expecting my husband to be so involved. He comes home with clothes or toys for them. He has a special bond with Ray. He wants to take him to workshops at Home Depot when he gets older.

In a Room Full of People, Papa Is Number One When we interviewed Rae, she made it clear that while she has a strong relationship with her grandson, her husband has a much stronger connection. Rae is a 61 yearold, white, mother of two and grandmother of four, who attended some college. Recently unemployed, she provides a lot of care for all of her grandchildren, and particularly for her three year-old grandson Paul, who has Down syndrome and immune deficiency. Her husband is still working so he does not help her on Tuesdays, when she spends the entire day caring for Paul. But on weekends, he plays with Paul so that Rae can take a few hours off. Though she spends more time with him, and oversees his feeding and therapies whenever they are together, Paul favors his grandfather, even though grandfather draws strict boundaries about what types of care he is willing to provide. Paul loves his papa to death. Papa is number one. In a room full of people, papa is number one. But papa does not feed him.

He Is His Buddy Similarly, while Linda spends a great deal of time caring for her grandson, she is quick to say that her husband has forged an extra strong bond. Linda is a 61 year-old, white, retired mother of two and grandmother of four, who has a BA. Her grandson George, age five, has Down syndrome. She and her husband both have very close bonds with George. But her husband is especially able to calm George when he becomes anxious or uncertain. George is loving, loves to snuggle in, be close, he likes closeness. He is very comfortable with my husband. Trick-or-treating George got a bit uncomfortable with the other grandchildren, he recognized their voices but not their faces, he wanted to hide. But my husband went over and he held his hand and sat with him till he figured it out. He is his buddy. My husband helps when George has impulses, wants to bolt, especially now as he gets older.

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He Is Very Good with the Kids, They Love Papa Heidi also says that even though she provides a great deal of care, all of her grandchildren have a particularly strong bond with her husband. Heidi is a 59 yearold, white, mother of three, stepmother of two, and grandmother of seven, who completed high school. She works over 50 hours a week. Her four year-old grandson Max has Down syndrome. She is very close to all of her grandchildren and spends as much time as she can with them. She says that the impact of a child with a disability on their extended family has been very positive. When Max was born, he was the first special needs child in a family of 200 people, in four generations. He is a big deal. He brought the family closer together. We have been blessed with that.

She notes that Max and the other grandchildren have a particularly strong relationship with their grandfather. He is very good with the kids, they love papa. He plays with them, reads, chases them in the yard, plays games, makes up silly games and gets them laughing and going crazy. Then I have to calm everyone down. They love papa.

Love, Laughter, and Special Relationships Grandparents who care for their grandchildren with disabilities tend to talk a great deal about love, joy, and very tight bonds. No matter how challenging the care work may be, and it is often very challenging, they appreciate how much they love their grandchildren and how much their grandchildren love them back. Many simply love spending time with their grandchildren with disabilities. Many find ways to maximize the good times in the face of difficult times. They are aware how valuable their assistance is for their entire families. Some find that disabilities bring their extended families closer together. Those who have formed close bonds treasure them. There is great pride in being the favorite grandparent. To understand why these relationships might be so special, we turn to one of the grandparents we interviewed, for his explanation. Grandparents are highly coveted childcare providers for a multitude of reasons. They are often free or at least low cost, flexible, available, devoted, and reflective of the family’s values. But it is more than that. Paul, a 69 year-old, semi-retired interior designer who attended some college, became a disability advocate from a young age. He has a younger brother who is quadriplegic and now he has his grandson, Alex, with Down syndrome. He has had years to reflect on the importance of grandparent care. In part, he feels, grandparents often have more time and experience than parents. By carrying part of the burden of grandchild care, they lighten the load for the entire family. There is a stereotype that grandparents spoil their grandchildren. Well! Maybe some of that’s true but we can be a lot lighter because we don’t have to carry the total burden. That’s another way to look at it. You can spend the quality time with the child. The parents who have the other stresses of life may not be able to.

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Perhaps most important, however, Paul feels that their decades of experience make them powerful advocates as well as reliable care providers. As far as grandparents are concerned, we have the time, the experience, the expertise. Some of the grandparents have financial abilities to help. We have made all the mistakes, but we gained an amount of self-esteem that allow us to push as an advocate. Maybe as a young parent, you might not have the time, the ability, and the resources. There is some wealth in grandparents working with children, in disability, in general.

Grandparenting children with disabilities can elicit a great deal of laughter, love, special bonds, and fierce advocacy. As the next chapters demonstrate, providing care can be daunting, exhausting, and never ending. It is work that often requires resources that are already in short supply. It is a labor of love; as this chapter has shown, it often comes with many priceless rewards.

Notes 1. Merrick et al. (2018), Samuel et al. (2017), Mansson (2016), Kahana et al. (2015), Mansson (2013) and Sullivan et al. (2012). 2. Davies and Williams (2013). 3. Carr (2019), Merrick et al. (2018), Yang et al. (2018), Samuel et al. (2017), Hayslip and Blumenthal (2016), Kahana et al. (2015), D’Astous et al. (2013), McNee and Jackson (2012), Sullivan et al. (2012), Lee and Gardner (2010), Green (2001), Heller et al. (2000), Schilmoeller and Baranowski (1998) and Gardner et al. (1994). 4. Merrick et al. (2018), Samuel et al. (2017), Hayslip and Blumenthal (2016), Kahana et al. (2015), Sullivan et al. (2012) and Kaufman and Elder (2003). 5. Merrick et al. (2018), Taylor et al. (2018), Hillman et al. (2017), Samuel et al. (2017), AbdulMalak (2016), Mansson (2016), Kahana et al. (2015) and Backhouse and Graham (2012). 6. Choi and Zhang (2018), Moore and Rosenthal (2016), Tang et al. (2016), Chen et al. (2015), Arpino and Bordone (2014), Hayslip et al. (2014a, b), D’Astous et al. (2013), McNee and Jackson (2012), Lee and Gardner (2010), Pruchno and McKenney (2002), Green (2001), Heller et al. (2000), Schilmoeller and Baranowski (1998) and Platt Jendrek (1993). 7. Amorim (2019), Carr (2019), Yancura et al. (2019), Choi and Zhang (2018), Bordone and Arpino (2016), Caputo et al. (2016), Di Gessa et al. (2016), Moore and Rosenthal (2016), Chen et al. (2015), Fredman et al. (2015), Arpino and Bordone (2014), Harrington Meyer (2014), Hayslip et al. (2014a, b), Bailey et al. (2013), D’Astous et al. (2013), Padilla-Frausto and Wallace (2013), Perkins et al. (2013), McNee and Jackson (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Lee and Gardner (2010), Tootelian and Varshney (2010), Pruchno and McKenney (2002), Green (2001), Heller et al. (2000), Schulz and Beach (1999), and Schilmoeller and Baranowski (1998). 8. Hillman et al. (2017). 9. Woodbridge et al. (2009). 10. Mansson (2016) and Lee and Gardner (2010). 11. Lee and Gardner (2010). 12. Bangerter and Waldron (2014) and Lee and Gardner (2010). 13. Woodbridge et al. (2009).

Chapter 4

Diagnosing Disabilities

Diagnosing childhood disabilities is complex. The process can begin in utero and last well into early adulthood. Often doctors are proactive and informative, but occasionally the process is impeded by doctor denial or discomfort, family denial or discomfort, incorrect test results, complex symptoms, or lack of access to health care. Some families seek diagnoses, some accept diagnoses, and some become conflicted as certain members accept and others reject medical evaluations. Often symptoms change over time or appear in multiples. Instead of being a single event, diagnosing is often an ongoing process that may last a lifetime. Here the grandparents tell us in great detail how families expend time, energy, money, and patience pursuing, accepting, advocating for, and acting upon diagnoses for their grandchildren. Some of the grandparents we interviewed were the first to notice symptoms and to encourage professional assessment. Some proactively learned as much as they possibly could about the condition and possible treatments. Others tried to follow the lead of the parents, providing support when asked. Some grappled with how to respond when the parents or doctors dismissed symptoms, provided confusing or conflicting diagnoses, or delayed or forfeited treatments. When the process is smooth, grandchildren tend to receive early, proactive interventions; when the process is bumpy those interventions are often delayed and grandchildren go without needed therapies.

Difficulties with Diagnosing Disabilities Studies show that diagnosing childhood disabilities is multifaceted and generates a wide range of reactions. Indeed, parents and grandparents have varied reactions when grandchildren are diagnosed with disabilities.1 While trying to come to terms with diagnoses, some grandparents go through an adjustment process from initial feelings of grief, stress, or depression. Most, but certainly not all, come to accept diagnoses and then strive to provide childcare, emotional support, advocacy, and © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_4

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financial assistance to their adult children and grandchildren.2 Though many help to relieve stress that may accompany the process, grandparents who struggle to accept diagnoses may actually add to stress and burden within the family.3 Studies from a few decades ago tend to report grandparents having adverse reactions and being less than helpful upon first learning of diagnoses, perhaps due to stereotypes and prejudices that were more pervasive then. More recent studies tend to show grandparents being more accepting and helpful as families settle into diagnoses.4 Family adaptations pivot on several factors including the availability of social and medical supports that will enable them to actively manage symptoms and encourage development. Grandparents often find themselves in limbo when discovering, understanding, and accepting diagnoses. Sometimes grandparents attempt to be fully involved and informed. According to a 2010 survey of 2,600 grandparents whose grandchildren had been diagnosed with autism spectrum disorder, 31% of grandparents were the first ones to notice the early signs of autism, such as developmental delays.5 But some diagnoses are more complicated than others. Sometimes parents deny symptoms and do not pursue diagnoses. Sometimes health care professionals are uncomfortable, ambiguous, or irresponsible in pursuing diagnoses. In all of these cases, grandparents may feel the need to seek additional information. One investigation of grandparents’ experiences found that some grandparents strive for answers by actively seeking and using knowledge about diagnoses from health care professionals while others tend to do their own research on-line or seek out others who share the diagnoses.6 One grandparent highlights the inadvertent dependence on professional knowledge when a grandchild was diagnosed with autism, “The worst for us was when the doctor mentioned ‘regression’. . . . We knew by the speed of the referral that something was really wrong. We were terrified. It was just not what we wanted to hear.”7 Over time, many grandparents accept diagnoses and proactively learn about disabilities, particularly when symptoms change with age or there are multiple symptoms. Some grandparents have great difficulty accepting diagnoses of disabilities. Sometimes upon hearing of diagnoses they pull away. In general, grandparents who pull away are not in this book – we only interviewed grandparents who are actively providing some care. Many times the withdrawal is only temporary. In a study of grandparents whose grandchildren were diagnosed with autism, some grandparents expressed guilt at initially denying the symptoms and diagnoses. One stated, “I still feel great shame and sadness that I didn’t recognize [my grandson’s] condition earlier. Clearly, I was in denial. I haven’t forgiven myself for this to this day.”8 Diagnoses are difficult, complex, and fraught with emotional reactions on the part of both medical professionals and family members and responses tend to vary over time. Early diagnosing typically leads to early interventions that encourage childhood development. The Individuals with Disabilities Education Act (IDEA) provides The Infants and Toddlers with Disabilities Program to encourage development for children with disabilities.9 Though state programs vary widely, children who are defined as having developmental delays or specific conditions are eligible for

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Individualized Family Service Plan (IFSP) which provide therapies to encourage physical, cognitive, social, adaptive, communication, sensory processing, and emotional skills. At age three, children typically become eligible for special education through IDEA. Legislation allows parents a role within schools in creating annual Individual Education Plans (IEP) for students with disabilities.10 Early and sustained access to these therapies and treatments facilitates fuller development in the early years and more comprehensive inclusion across the life course. When diagnoses are delayed, so are treatments, and children with disabilities go without much needed proactive care. Maddeningly, many eligible children are not receiving early intervention services, particularly if they are lower income, Black or Hispanic, or do not speak English as their first language.11 As cumulative inequality theory suggests, those who have fewer resources and greater needs may struggle to make sure their grandchildren with disabilities receive all of the supports they need. Certainly families with more income and education are more likely to have access to high quality health care and sufficient resources, including lawyers, to deploy needed supports.12 But ableism, which is discrimination against people with disabilities, cuts across class lines. Mistreatment of people with disabilities includes bullying, social ostracism, denial of employment, and exclusion from housing.13 Ableism also includes dismissal of symptoms, denial of diagnoses, and delay of needed treatments. To impede diagnosing and therapeutic treatments for children with disabilities constitutes ableism. It also constitutes child neglect. We found evidence of such ableism in reports from some of the families with the highest, and lowest, income and education levels. We also found evidence of proactive diagnoses, early interventions, and staunch advocacy among some of the families with the highest, and lowest, income and education levels. Though none of our respondents use the word ableism, they certainly witnessed it. They were deeply concerned that children who are diagnosed later tend to enroll in services later and are more likely to have developmental delays.14 Such delays were a source of enormous stress for some of the grandparents we interviewed.

Original Diagnoses Many of the 50 grandparents we interviewed talked at length about the process of diagnosing. For some families, the original diagnoses are quickly obtained, absorbed, and accepted. For others the original diagnoses includes years of confounding symptoms, tests, opinions, and denials. Here families describe a wide variety of experiences. Sometimes medical professionals, and other times parents or grandparents, delay or deny diagnoses. Such deferments heighten heartache and tensions, and stall vital early interventions.

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We Were Aware He Wasn’t Developing As Quickly As His Twin For 75 year-old David, the process of diagnosing seemed fairly smooth and hardly noteworthy. He and his wife began to notice that Bill was not keeping pace with his twin. Eventually Bill, now 16, was diagnosed with cerebral palsy. We were upset but I don’t think we realized it until he was a little bit older. As an infant you couldn’t really tell. I don’t remember at what age he was diagnosed, we were aware he wasn’t developing as quickly as his twin.

Alex Was Showing These Signs and He Was Quickly Diagnosed Similarly, 69 year-old Paul and his wife noticed that their grandson Alex, now six, exhibited tell-tale symptoms. To Paul, diagnosing seemed straight forward. In part, that may be because Paul has considerable experience with disabilities. He is a longtime advocate whose brother had disabilities, and who now helps assure that buildings are compliant with American Disabilities Act (ADA). As you learn about more about disabilities, about Down syndrome in particular, there is a dilemma; one of the parts of the syndrome is called low tone. Where you can lift your arms up, that would be harder for a child and an infant with Down syndrome. Picture your muscular strength to be 50% less than what it is. Automatically from birth, Alex was showing these signs and he was quickly diagnosed. That low tone could be overcome, that could be strengthened.

It’s Not a Death Sentence, It’s Just Downs Some grandparents were frustrated by doctors’ and other health care providers’ reluctance to diagnose. Ina, age 46, notes that when her grandson Ray was born, the doctors were hesitant to say the words: Down syndrome. Three years later she remains very frustrated by their recalcitrance. I have been a nurse for 20 years and I did not like how the doctor handled it when Ray was born. I knew right away that he had Down syndrome, but I did not want to be the one to tell her. She is my little girl. But the doctors did not tell her and they went out the door and whispered and so she knew something was wrong with her baby but did not know what. No one wanted to tell her, they did not want to let her know. They wanted to wait for a blood test. He was limp. He had every characteristic. They would not tell her. They kept saying since there is some Filipino blood that the appearance was due to that. But I knew it was not. So I went home that night and I was beside myself. I did not want to be the one to tell her.

The doctors continued to drag their feet, so Ina confirmed her daughter’s suspicion that Ray had Down syndrome. She started to google that night and figured it out and called me and asked me, “Mom does he have Down syndrome?” So I went back that night and said, “I think he does but let’s wait for them to tell us.” We had three pediatricians come in and they all said different things but none said Down syndrome. I was so angry. Just pissed. Just say, “Congratulations you have a beautiful baby with Down syndrome!” It’s not a death sentence, it’s just Downs. Just tell her.

It Is Not a Disease. It Is Special Needs. So What? Similarly, Jane has been bothered by how sad and sorry medical professionals and others become when they learn her grandson has Down syndrome. Jane is a 50 year-old married mother of three, and grandmother of one, Jay, who is 17 months

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old and has Down syndrome. She works full-time and, because she lives eight hours away, sees Jay one long weekend a month. She has little tolerance for people’s sympathies. I honestly don’t even see that he has Down syndrome. No one could tell when he was born, until he was in the NICU and they said, oh, we need to test. I think he looks perfect to me. So cute. . . When children are born with special needs, with Down, almost everyone says they are sorry, sorry they have to test for it, sorry the test is positive. I am a nurse and a parent and a grandparent, and the body language of how it was said, they were sorry. And I thought it is not a disease. It is special needs. So what? It is what it is. The approach by the health care providers is so sorry. They should have training on how to talk to parents if they have to test and when they come with the results.

Jane said that Jay had a floppy airway at birth and she was concerned, and prayed for him, while they treated him in the hospital. But she had little patience with people feeling sorry for her family. They present Jay’s birth in a positive vein, proactively curbing people’s sympathy. They want congratulations not sympathies. My daughter and I talked and formulated about how to tell everyone. We put it out there positively. We said how blessed we are, we did not set ourselves up so that people would even have the chance to say they were sorry. We wanted to hear congratulations. People will say I am sorry your baby has Down instead of saying, congratulations on your new baby. My daughter and I did not know when he was born, but soon after they tested and then we found out. But we did not want people to be sorry.

She Was Born with a Brain Bleed and She Wasn’t Diagnosed Until She Was About 18 Months Old Often symptoms are not obvious at first, and concerns raised by families may be dismissed by health care providers. Jennifer has five children, two stepchildren and seven grandchildren. She is a 60 year-old white, widowed, full-time teacher, who has a BS. Her two year-old granddaughter has cerebral palsy. She was born with a brain bleed and she wasn’t diagnosed until she was about 18 months old. She walked late and she dragged her leg. I think my daughter always knew deep down but the doctors kept on saying she was fine. She had to rock all the time. Then she started doing everything with her left hand. At 18 months she went to the therapist and when the therapist looked at her chart she said, “She has CP.”

It Was a Shock, Having a Grandchild with Disability Often diagnosing is a multi-year process as different symptoms emerge and various hypotheses are tested. Now 71, Hanna remembers 19 years ago when her grandson Danny was born. She began to notice certain behaviors. When he was about two years old, Hanna and his parents noticed that Danny was fascinated with names and numbers on mailboxes during neighborhood walks. He was also developing an aversion to loud sounds. It took several years to obtain a diagnosis of autism. I noticed that if there is a very loud sound, he would put his hands on his ears. He could not tolerate loud sounds. . . . He was diagnosed when he was three and a half with a sensory integration disorder, which I had never heard of. They didn’t say autism, they said sensory integration disorder.

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They took Danny to a specialized clinic at a major university to test his hearing and the experts decided he had hearing problems and needed tubes. Hanna’s daughter then went to the ear, nose, and throat specialist. They put tubes in his ears. Never thinking that he has some other problem. My sister in-law thought that he was very smart and the reason being that at the age of two we used to buy him those toys, flash cards, and puzzles. He took puzzles and he’d mix them together and do them very quickly. Faster than I could do them. And he watched Sesame Street. He liked all that stuff. He loved books. I would take him in the stroller and see a bookstore, “Books!” He was addicted to books. He’d carry a book bag on his back and he would fill it with books. And if you tried to take it away from him, he would be very upset. I’m thinking now it was more, he needed it for comfort or something. It’s strange. Then come to find out: one day we were sitting, he was two, we have these things where you flip the disks on one side is the name, on the other side is a picture, he was reading. He was reading when he was two but he was not speaking. And I was thinking, “How can you read before you speak.” He taught himself from TV to read. Weird!

Danny was ahead of the curve on some measures and behind on others. So they continued the process of diagnosing. Then finally when she had him tested they said sensory integration disorder. . . It was a shock, having a grandchild with disability. I remember when they first told us. I was, “What, what are you talking about?”

It Was Like a Relief Because Now She Can Get Help Often family members posit hunches, but tests are delayed because health care providers dismiss the concerns. At age 76, Maureen remembers when her granddaughter Madge was little. She and her husband began to notice some symptoms, such as her disinterest in kittens, but were not sure what they meant. The process of diagnosing took a few years. Madge, now 20, has autism. My husband knew there were something wrong before she was diagnosed when she was just little. We always had cats and we always had kittens. One time she was visiting here she must have been around two. And when we said “Madge, we have baby kittens.” You know how little ones will always like small little fury things and they want to pet it. She had no reaction and I said, “There is something there. She is not responding the way a child should respond.”

Though they had a hunch that Madge might have a disability, time passed before they obtained a diagnosis. They were spurred into action by a relative with medical expertise who urged them to seek professional assessment. The next summer we were visiting relatives of hers. We were at Nantucket, the whole family. My son-in-law’s sister is a nurse and she said, “I hate to say this but I think there is a problem with Madge. When you get back to Chicago, I think it’s a good idea to have her tested.” They were devastated. But we all had agreed that there were something. They took her to the University of Chicago and she was diagnosed autistic. It was like a relief because now she can get help.

I Had a Feeling This Is Where We Were Going Several grandmothers told us that they were pretty sure of the diagnoses long before the doctors said anything. Linda, now age 62, told us that after the first prenatal blood test she thought that George, now age five, would have Down syndrome.

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However the doctors did not say anything, so Linda and her husband did not say anything until after George was born. I know about special needs children. I never saw it as negative. I never had a negative thought about it. That first blood test showed one in four chance. Everyone else was pretty much in denial. I just always had a feeling. I was very careful with my daughter, what I said, because I had a feeling this is where we were going.

He Is Denying That She Is Autistic Diagnosing of her granddaughter’s autism has been delayed, according to Cindy, by parental denial. Cindy is a 69 year-old married, white, retired mother of three and grandmother of three, who has an MBA. She regularly cares for her granddaughter Sara who she says has “pretty severe autism.” Cindy feels that Sara’s parents are in denial about her autism and therefore not proactive about her care. There is a fair amount of tension between the parents and grandparents and the rest of the extended family as well. The first symptoms appeared around age one. Before this happened, she seemed normal. When she was around one, I was babysitting Sara four afternoons a week and she had been babbling at one year and suddenly stopped. I became alarmed and went on line, I’m a researcher. And I read that this is a sign of autism and then I saw other signs. After a few months I approached her mother and told her mother and maybe we should have her tested. And my daughter-in-law said you can’t believe what is on the internet, and all kids develop at different times and rates. She also said, you don’t know anything about childrearing, you studied accounting. But I raised three children. So, that is her attitude toward me.

Numerous doctors, and Cindy, who has worked in a facility for people with disabilities, were telling Sara’s parents that she had autism and needed therapy. Yet Sara’s parents refused to take action. Parental denial of the symptoms and treatments for their children with disabilities smacks of ableism.15 Outraged by their neglect of their daughter’s needs, Cindy outsmarted Sara’s parents. Cindy began to pay for nursery school knowing full well that the staff there would join the chorus of health care professionals telling them Sara was autistic and needed interventions. When I suspected she had a problem, and my daughter-in-law refused to see it, I take a lot of crap from my daughter-in-law. I could have just said to her, fuck you. But I didn’t. I took the crap because I wanted to see Sara. I could not get them to see that she was autistic. So I was manipulative. I paid for Sara to go to nursery school when she was two because I knew the teachers would tell my daughter-in-law that Sara needed to be evaluated. And they did. And then my daughter-in-law finally took action and Sara finally went into special ed.

Cindy says that Sara’s parents never use the word autism. They are secretive about her condition and her care. She keeps the things they are doing with Sara a secret. Most of what I learned is from her other grandma. And I have talked to her teachers and asked questions about the educational time and about floor time. There might be some private schools she would be eligible for. I learn almost nothing from her parents. And no one uses the word autism. They just call it developmental delay or they say nothing at all. It is the elephant in the room.

Sara’s parents have not followed the doctors’ advice to obtain early interventions, particularly therapies for speech and movement. Cindy fears that they are clinging to

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the hope that Sara might outgrow her autistic symptoms. They know of a child who apparently did so. I’m much more involved in doing what I can to help Sara. They just go along and do the basics. They know a child who, at age four, suddenly started talking and lost the autism symptoms and I think they thought this would happen for Sara. They were told by the pediatrician to get her speech therapy at 15 months, but they did not do it. In fact they just started speech therapy, because now they have her on government disability benefits and that pays for the therapy. It is just dawning on them slowly that she is not going to miraculously get better and that they have to be more proactive.

Cindy’s priority is to engage Sara in discussions but she says the parents and maternal grandmother do not share that focus. They have not embraced the diagnosis and they have not embraced the suggested therapies. Sara’s parents and the maternal grandmother talk with each other but rarely to Sara. Cindy says she always focuses on Sara. I try to talk to her, I will ask her, “How is that yogurt?” She does not answer. But I keep trying. But I’m not there all the time, so it is easier for me. At night they are always on their phones, the other grandma has told me, she will even tell them they should get off their phones. But they don’t. They are much more laid back. They take her out and go shopping and to craft shows, but there is not much interaction. I’m always talking to her. At a restaurant, the adults will talk to each other and I’m always trying to talk to Sara, and get her to look at me and engage with me. But her mom and the other grandma, they will just talk to each other. She is making more progress now. She will look at you more often, engage, much more than a year ago. At a restaurant I will say things but she does not respond. The other two will talk with each other, like Sara is not there.

Cindy is baffled by, and angry about, her son’s complete lack of participation. She says he is in denial about the diagnosis and will not discuss it with anyone. My son is totally out of the picture. My daughter-in-law works in a home for disabled people so she is the expert and he defers to her completely. I babysat all last Saturday and I told him, I know a lot about autism and would like to talk about it with you, and he just shrugged me off and left the room. He is denying that she is autistic. He just says, oh that is for her mother, she is the expert.

She is also exasperated by her son’s focus on the cost of therapy for Sara, when both parents have good careers and incomes. Cindy feels she can never say much because she is the paternal grandmother. She says daughter-in-laws are all close to their moms, and she and her husband are second class. As such, they feel they are at risk of losing time with Sara if they criticize. My son is in denial. When someone said, “You need speech therapy,” my son said, “How much will that cost me?” That was his first thought. Did I raise him? Is that my son? Now the government disability benefits pay for the speech therapy, so now they have it. But they did not start it until she was four, and yet they both just bought IPhone 10s. Their priorities are out of order. As painful as it is, as a grandparent all you can do is watch. If you say much, it is at the risk of not being around much. Not seeing Sara. If I was the other grandma, the maternal grandma, I could say more. But as the husband’s mother you have to keep your mouth shut.

Cindy’s other sons share her dismay over Sara’s father’s refusal to accept the diagnosis and his lack of participation in helping Sara develop.

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My twin boys have grown disgusted with their brother. They feel that he should have started speech therapy at 15 months when the doctors told them to, and started special ed as soon as they could have. So there is a big gap between the brothers now. That is another issue. They do not respect him anymore. They are angry and disgusted by his lack of action. And then when they finally started speech therapy, when she was four and they got government benefits to pay for it, they kept it a secret. I tried to tell my son, people will respect you if they know you are doing something for her, don’t keep it a secret. But he just walked away. He leaves it all to his wife, the expert.

Diagnosis and treatment have been delayed by parental denial, generating tremendous tension between family members and delaying therapies that are likely to be very helpful to Sara. We Thought Autism, But He Had Eye Contact, So We Were Confused Diagnosing of Betty’s grandson took years, as his symptoms changed from strident crying, to limpness, to tantrums, to headbanging. Betty, age 63, lives near her five year-old grandson Carl, who they now know has mild Williams syndrome. She describes a two year struggle to garner a clear diagnosis; she also describes how the family struggled to cope with various symptoms. First, they tried to respond to nearly round-the-clock strident crying. The symptoms have changed as he has aged. When he was born he was a big baby and was well formed and he cried a lot right from the beginning. Hard to settle. Just cried and cried. We spent many, many, many hours walking and working to sooth him. Trying to settle him. He was difficult to settle down. And if he did settle, he typically woke up again with an hour or two. That lasted until he was two or three. He still wakes up sometimes at night. It was two or three years before he was getting a few hours of sleep at night consistently. The crying went on for a year or year and a half. Frequent and strident and very loud crying.

Eventually they determined that he had a form of reflux, though he did not have the usual symptoms of spitting up. He would nurse for long periods of time because it helped sooth him. He was a rather distressed baby. Hard on my daughter because she had an older child. We got him a swing and that seemed to sooth him a lot. Walking and swinging typically were the only things that made a difference. If he went to sleep for any time at all it was usually in the morning and by then the other child was up my daughter was getting an hour of sleep at a time. She was surviving on practically no sleep for a very long time.

Then around age one, Carl started to have meltdowns and did not show affection or much of a reaction to others. He would not really snuggle or wrap his arms or legs around his parents or others. He was just limp. He just hung there. No affection for anyone particularly. He was fine with eye contact. Did not hug. He would have horrible, horrible, meltdowns. Lie on the floor and scream and writhe and no one could be near him or touch him. If you came near it just got worse. He would throw his head and hit it on the floor, on concrete, on walls, with no regard for what he was hitting his head against. I saw him hit his head so many times on the floor, on concrete. He was unstoppable till he was ready to stop.

These symptoms suggested to some a diagnosis of autism, but the symptoms did not quite add up. Time passed and they remained unsure.

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4 Diagnosing Disabilities We thought autism. But he had eye contact. So we were confused. The headbanging stopped around three. He still likes to rock and bump his head as a soothing mechanism, and sings. It is not an issue at this point. Headbangers usually stop around age three. They figure this hurts and they stop. The meltdowns went away.

They also noticed tactile sensitivities. Initially, Carl mainly focused on hugging his mother’s hair; over time that evolved into more traditional hugs. When he was one and one-half years old, about when I moved here, we noticed that he would play with my daughter’s hair. He would wrap his arm around the top of her head, and hug the top of her hair. She could not see his face she just knew that he was hanging on to her hair all the time. We realized that when he was doing that he had a look of sheer bliss on his face. He had gotten very attached to her hair. He did not learn to hug lower, where we could see him, until about age two or three. His hugs other than with his mom, dad and brother were not much. He would just put his forehead against you, that was his idea of a hug. That has improved with time, and now he hugs and is a loving, sweet, affectionate, adorable child.

Betty says they all had a hard time those first few years, in part because the symptoms changed over time, they did not have a clear diagnosis, and he was not yet verbal. As Carl became more verbal he wanted to understand what they were saying to him. The more readily they were able to talk with him, the more he began to settle down. Carl was between ages two and three when he was diagnosed with Williams. At first they said autism spectrum, and there is nothing we can do for him. Then later the doctor asked us to consider genetic testing, and that is when we discovered the Williams. He’s missing only a very small portion of the normally missing genes and chromosomes. Interesting situation because he really is not missing a lot. But there are still some symptoms.

Now, at age five, Betty describes Carl as a very sweet, polite, verbal, affectionate child. He has some physical symptoms with Williams. His school wants him to have physical therapy but his parents have not yet initiated it. She thinks it would be good to help him with awkwardness and the fine motor skills, but stresses that his symptoms are mild. He has hand flapping as you would see with autism. His fine motor skills are not strong. Some awkwardness. He is doing remarkably well. Not strong on writing. He can draw some shapes. They are rough. But identifiable. His attention span is wonderful when he is doing something he wants to do. But he can be distracted easily, He does not have the physical symptoms that very often go with Williams. He seems to be healthy. Other than the awkwardness, and fine motor skills problems, he seems fine. Unlike kids with more severe Williams, he runs, jumps, climbs, and plays with his brother. He rides a scooter. He is surprisingly graceful on the scooter, it is fun to watch him.

The Doctors Had No Idea What Was Going on and They Were Sending Us to Different Places Diagnosis can be delayed when doctors dismiss family concerns or pass patients on to multiple other providers. Kelly, age 72, and her husband noted developmental delays and balance issues early on. Her granddaughter Maya, now seven, was eventually diagnosed with cerebral palsy. My oldest daughter is a physical therapist assistant, so we noticed that something was wrong from the time Maya was born. When she was a baby I was with her continuously and I know

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she wasn’t doing what she was expected to do for her age. Her balance was way off. She was supposed to be able to stand on her legs when she was four months and she wasn’t able to. And my other daughter and I started doing physical therapy with her. We started therapy at four months then we took her to a doctor. . . and he told us there was nothing wrong with her. I knew there was something wrong with the child. She was always smiley little girl even as a baby but her balance was off when she was a baby. When it was the age for her to start walking she couldn’t walk. It got worse as she was getting older.

Kelly and her daughter became frustrated since they have consulted so many specialists and they could not agree on a definitive diagnosis. We spent so many years with the doctors and had no idea for so many years what was wrong with her. The doctors had no idea what was going on and they were sending us to different places. . .They would give us the run around. We went to different facilities and they told us “Oh I don’t think this is what she has.” We were going back-and-forth it was so frustrated between them telling us it was orthopedics or it was something new. If we were told by the pediatrician initially, something could have been done for her. There was something wrong with her. We had to switch pediatricians so many times.

Kelly and her family exhausted their time, money, and patience trying to secure a diagnosis for Maya, but by far their greatest frustration is that they missed the opportunities for many time-sensitive therapeutic interventions. Kelly is still not sure whether they have a correct diagnosis. She was diagnosed with CP but no one really believes that she had CP. She was having some spasticity in one of her legs. They technically diagnose her with CP because they did not know what was going on with her.

Until She Got on a Certain Medication, She Had Like 20 or 30 Seizures a Night Even when symptoms are quite pronounced, diagnosing often requires multiple visits to multiple health care providers. Rose is a married, 64 year-old mother of three and grandmother of five. Three of her grandchildren have disabilities; two on the autism spectrum and Mia, who is eight years old, has a rare form of cerebral palsy and is quadriplegic. Mia was diagnosed as an infant but the process was complex and took much of her first year. She’s physically impaired. She can’t walk or talk. She had meningitis at ten weeks which affected her brain.

Doctors were fairly quick to arrive at diagnoses but were slow to be able to find treatments that relieved the symptoms. During that first year, while they were diagnosing and experimenting with various medications, Rose provided a great deal of care for all of her grandchildren. Then she focused on caring for Mia so that her daughter could focus on the other children. Until she got on a certain medication, she had like 20 or 30 seizures a night and they didn’t help and they put her on valium to have her sleep better. Once she started sleeping better we had a different time. But she had to be held all the time because she was probably so tired she couldn’t function.

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Ongoing Diagnoses Very often, grandchildren diagnosed with one disability are subsequently diagnosed with others. Sometimes diagnosing is ongoing because the symptoms change over time, with age. Other times, diagnosing is ongoing because new symptoms emerge. Families no sooner come to accept and develop treatment plans for one set of conditions than they find they have to reorganize, accept, and develop treatment plans for an additional set of conditions. Here grandparents describe a never-ending series of testing, accepting, advocating for, and responding to multiple diagnoses. ADHD Gets Harder with Age Often grandchildren undergo testing and re-diagnosis because symptoms and conditions change with age. Candi, age 62, has custody of her oldest granddaughter, Aly, who had low birth weight due to maternal and paternal drug and alcohol use. Then in kindergarten, Aly began to experience mild seizures and difficulty with retention. Now age 12, Aly is diagnosed with ADHD and asthma. I would go to work and my second husband would get her ready and bring her to work at my day care with me. When I got off we would go home and do whatever needed to be done. She was a happy child. In kindergarten she started to have difficulty. She could not retain things. The teacher noticed she was having mild seizures, staring into nowhere. A blank stare. She would come back but it would not be a full come back, like she was not really there. We had her tested in first grade and that is when they knew there was something. She takes several medicines, in the morning and the afternoon, and also medicines for asthma. The medicines helped, very much so.

With age, the symptoms have become more pronounced and varied, including ticks and anger management issues. And then when she was 11, we noticed she was having ticks. As they go through puberty they start to have more issues, more ticks. She was having more difficulty as she got older. She would have anger issues. She was angry over practically nothing. I had never seen her act like that. She had never had anger or behavioral issues. It was getting more and more. The doctor said that as she matured these things would start popping up more regularly. . . ADHD gets harder with age, one of the tics that came in this last year was this constant desire to wash herself, taking baths over and over all day, and with age we expect more tics, until her hormones level off at the end of puberty. Often worse with girls than boys.

They Gave Him an MRI, But They Never Really Told Us How Much Damage Multiple conditions can complicate diagnoses, but as Connie points out, so can doctors who are not forthcoming. Obtaining comprehensive diagnoses for her grandson has taken all of his first two and one-half years and, Connie says, they are not done yet. Connie, age 57, says her daughter and her only grandson, Andy, live with her so that she can care for Andy ten hours a day during the week, and occasionally on weekends. He has cerebral palsy, short gut, and has suffered from neck injury twice. He had recent surgery to get a G tube put in. . . He was born three months early so he is way behind on all the stuff. I mean, he’s almost three and he can’t walk or talk or feed himself, anything like that. He can’t even crawl. His CP is supposed to be moderate to severe, but we really don’t know because in the hospital they gave him an MRI, but they never really told us how much

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damage. We’re trying to get him into a neurologist to get a more accurate. He was diagnosed with CP in the first part of this year. We kind of knew that earlier than that.

He Is Impaired and He Can’t Read Carole’s grandchild also continues to be diagnosed with additional disabilities over several years. Carole, age 74, has a daughter who is diagnosed with a learning disability and bipolar disorder. She is custodian of three of her grandchildren, including Nico, age 11. She says Nico was first diagnosed with dyslexia, then developmental coordination disorder, at age three, then autism, at age five. She says he is more social than most autistic children and has no sense of boundaries. Now the family seems most focused on the latter diagnosis, autism. He is impaired and he can’t read. Anything that is symbolic, he can’t deal with it. He recognizes number but can’t make sense of it. He doesn’t watch a lot of TV. Books are not interested to him because of sensory overload. . .He is very much interested in cars. He checks everybody’s cars outside. He likes predictability. . . It’s hard for him to get dressed, getting showered. He needs supervision with that. I still brush his teeth. He needs help. I put out stuff for him to get dressed.

They Said He Had Mild to Moderate Hearing Loss and, We Were Just Devastated The irony of the first diagnosis is not lost on Doris. Her grandson was first diagnosed with hearing loss and she was devastated. Like other grandparents we interviewed, she has since heard much more serious diagnoses. Now the hearing loss is the least of their worries. Doris, age 55, provides extensive care for her one biological grandson, John. Now age 11, John has since been diagnosed with several additional disabilities including atrophy of the brain, Lennox-Gastaut seizures, and visual impairment. Despite her MS, Doris routinely assists with his feeding tube, ventilator, tracheotomy, and catheter. It all started with a failed hearing test. At the time, that felt like a big setback, in retrospect it does not. It was a total surprise. I remember the first thing that after John was born, he did not pass his hearing test. And, we were just devastated. They said he had mild to moderate hearing loss and, we were just devastated. Now I look back on that, and I actually have to laugh. It’s like hearing, if that were the only thing. I can honestly remember where I was at. Who I was with and what time of day it was when I got the news of him not passing his hearing test and how devastated I felt. And, now I look back on that go, “Holy cow, if it were only just hearing.” What? Oh my gosh, life would be so different.

John’s condition is terminal and Doris does not know how much more time she will have with him. We Have Had to Push the Hospital Just to Do Testing to Find Out What Was Wrong with Her Even when diagnoses begin early, it can take years to obtain a full picture. For Jill’s family, the first diagnosis was in utero, a heart defect. Jill, age 48, lives just 15 minutes from her youngest granddaughter, Minnie. At three months, Minnie has already been diagnosed with a heart defect and Down syndrome. After the family pressured doctors for further testing, she was also diagnosed with an intestinal

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disorder. Minnie is Jill’s daughter’s third child and when they found through prenatal testing that she would have Down syndrome, she considered an abortion. She was diagnosed at 25 weeks. But, she was diagnosed with a heart defect first. And then they did an amnio, and found Down syndrome. So, I think it was 30 weeks that we had the final diagnosis of everything. In the very beginning she was petrified. You know, worrying about the older kids, and how that was going to affect them. You know, a million different things. The fact that I was 1000 miles away. All of those things definitely influenced her leaning toward that abortion at that point.

Jill’s son-in-law was opposed to an abortion, but it was in fact meetings with other mothers of children with Down syndrome that made her daughter decide to continue the pregnancy. I think her husband was totally against it. He told her that he wanted to keep her, and that he would not support her because, the way it works here is if it was after 28 weeks I think, we would have had travel to like Georgia for her to terminate because here they won’t allow you to do it. So, she would have, basically do it out-of-pocket, and he was not supportive of that at all. Which, I wasn’t really supportive of it, but I was supporting her because it was her decision. And, finally, what it came down to really was the girls from the group, from Down syndrome diagnosis network, with the babies that have already been born sat and talked with her and said, “You know, this isn’t how things are going to be.” Because you get this whole idea that your life is going to be so much worse. That’s the way the doctors portray it. I mean really, they don’t make it positive at all. And, once she sat down with the girls and saw, you know, that it would be okay, I think she just really took a deep breath. . .

Now both Jill and her daughter are advocates for children with Down syndrome. One of their main focuses is the need for better diagnostic practices, particularly concerning abdominal issue, and more complete diagnoses. They have been very frustrated by the failure of doctors to heed their concerns about Minnie’s vomiting. Minnie was vomiting all the time and the doctors kept saying this was normal. When they broached the topic with other parents and grandparents online, they found that Minnie’s condition was far from normal. We didn’t find out until two weeks ago. They have been awful trying to get a diagnosis. We have had to push the hospital just to do testing to find out what was wrong with her, so. A lot of it has been hospital related.

After much pressure, doctors finally performed additional tests that showed that Minnie needs surgery to correct the issues. Jill remains quite angry about the way the doctors refused to run tests she was sure were needed to obtain comprehensive diagnoses. It’s so intimidating. You have a doctor, and you expect to be able to trust them no matter what. And, don’t get me wrong, I’m jaded. I was an EMT; I know how doctors treat people. So, I get it. To have to look at a doctor and I would say probably 25 times in three months to say, “Could this possibly be a gastric outlet problem?” And, everyone one of them has looked at me like I’m an over-paranoid grandmother who has no idea. Then, it turns out that I was right, and I have to go back in there and go, “Why didn’t you listen to me? She could have been treated three months ago.” You know, all because these doctors are so intimidating, and they don’t listen. I’d love to see that change, just somehow. I don’t know how, but somehow.

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“Why Me?” During the process of diagnosing grandchildren, some families take the news in stride, some deny or turn on each other, and some pause to ask, “Why me?” Why do I have a grandchild with disabilities? Or, why does my daughter have a child with disabiities? Sometimes they are asking rhetorically, other times they are actively searching for the causes, the reasons for, the disabilities. I Couldn’t Believe That This Was Happening to the Family Few families anticipate the arrival of children with disabilities and some may have a hard time believing it is happening to them. Maria, age 71, enjoys taking all three grandchildren to church. Her grandson Marco is diagnosed with a condition Maria had never heard of: Prader-Willi. When she finds herself wondering why this happened to her family, she turns to her faith for answers. It was detected when he was first born. First they noticed the signs. Then they tested him and it was confirmed.

The family was stunned. They had no exposure to the condition and were very surprised by the doctor’s assessment. That was really shocking to the whole family. Because we never had to deal with that. And we never dreamed that we would be one of the families that would have a child with disability. You know. And we didn't know anything about this syndrome. Nothing at all. We never heard of it. We have heard of other disabilities.

Marco’s symptoms presented in ways that were very typical for this condition and that assisted with relatively early diagnosis. The first sign is poor muscle tone and poor sucking when they are born and when they are a year. When they have an urge to eat, they have that appetite that they cannot control and they could eat themselves to death until they just choke. . .So they die of obesity and it also affects their breathing since they have low muscle tone. Their organs don't have that strength that normal people do. My grandson has all these symptoms. He has gastroparesis, sleep apnea, and asthma.

Despite their shock, Maria’s daughter dove in and learned everything she could about her son’s condition. Maria lauds her daughter’s efforts and resourcefulness in becoming an expert on Prader-Willi. She got so involved immediately. She just went right in. She is a major part of the association. As a matter of fact, she is a mentor, she is the director, and she works for them. She knows. She deals with all the agencies. They all know her. She got involved 100%.

Maria turns to her faith to cope with the diagnosis of her grandson. She cries while enumerating some of the challenges that she faces with having a grandson with a disability. She evokes the support of her church and believes that God is using her family to help others cope with disabilities. Because like I said I didn't know what it was and then after I found out a little bit more of what it was. I just couldn't believe it. I couldn't believe that this was happening to the family. And it took a little bit for me to finally accept it and say I do have a child. But you know you

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4 Diagnosing Disabilities just get used to it. And I know that one of the reasons is the gift that God has given my daughter to be able to learn and to know so much. To give her that way to have knowledge. That she's able to help so many families out there.

Maria sobbed during much of the interview. We offered to stop but she felt strongly that she wanted to tell her story. I always have so much faith in God. When I feel low like this, I call out to him. And sometimes he gives me strength. So that helps. My faith in God helps. . .Thank God that it hasn’t really made a physical damage to my health because my faith in the Lord is what keeps me up. But some people don’t have that faith in God and they let themselves wonder, “Why did this happen to me?”

Why Did God Give These People an Autistic Child? Similarly, Cindy constantly wonders: “Why me? why us?” Cindy says that she has been on an emotional roller coaster for four years. Because her son and daughter-inlaw continue to deny the diagnoses and treatments, Cindy sees no end in sight. She will always be wondering why they have an autistic grandchild and worrying about whether Sara is receiving enough support. I wonder, why did God give these people an autistic child? Of course I know it was not God. I know it is genetic, and that she was a premie, and that other factors contribute. But I have a lot of trouble accepting, why did this happen, especially when they only have one child and it makes me very sad. I look at Sara and what kind of a life will she have, if she had more help she might have a more normal life, but she is not getting that kind of intensive help. What if they had started therapy at 15 months like the pediatrician told them to. How far along might she be now? My heart breaks, I get so sad.

You Feel Like Your Heart’s Been Yanked Out of You For some grandparents, the tendency to ask “Why me?” seems to pass with time. Though the original diagnosis left her reeling, Dawn says she has since found her footing. Dawn is a 70 year-old, white, retired, mother and grandmother of two, who has a BS. Dawn’s oldest grandchild, Rob, age nine, has cerebral palsy from an eventful delivery He was blue then when he was born because he’d been in the canal tool long. And so then he was immediately taken from the hospital he was born and taken to, they were in Cambridge then, so he was taken over to Boston Children’s Hospital which is, you know, like the best hospital in the world basically. And probably wouldn’t be alive if he had been born somewhere else. He probably wouldn’t have made it but they kept him alive.

Dawn describes in detail the manifestations of Rob’s condition, which require a great deal of careful attention from his family caregivers. He’s quadriplegic, he can’t speak so he uses augmentative communication to talk, and he is fed through a tube in his stomach. He can’t take any food with chunks, he’s starting to eat a little ice cream or hummus or things that are very smooth, he can now eat a little bit of, but basically, he gets his nutrients through a gastric tube

Dawn highlights the difficulty of accepting Rob’s disability at first, but then describes how over time she has come to accept it. But her sadness lingers. And I think you kind of feel like, you feel like your heart’s been yanked out of you and the blood has been twisted. But it’s really interesting, over time you fill up again. It changes, but

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at first it was sad. You’re sad for your child and you’re sad for your grandchild both. Your heart breaks.

I’m Sure It Will Be Something We Will Be Chasing for the Rest of Our Lives Sometimes the question of “Why me?” leads families to wondering if they are somehow at fault, or responsible, for the disabilities. Did they do something wrong? Dorothy is a 59 year-old, widowed, white, semi-retired, mother of three and grandmother of five, who completed high school. Dorothy is very close to her three daughters; they all live in the same town. Her daughter, son-in-law, and two year-old Johnny, who has autism, moved to a different state because the sonin-law had gotten a job transfer. Shortly thereafter, the parents started noticing that Johnny was not developing at the same pace as other children in daycare. They hadn’t diagnosed Johnny at the time. So when she had him in daycare down there. They noticed because he completely shut down, physically and emotionally. He wouldn’t sleep or eat. Obviously he wasn’t talking. She knew something was wrong. They were down there not knowing anybody.

After Johnny was diagnosed the family decided to move back to be closer to Dorothy for extra support. They realized that they needed the support. She was calling and crying every day. She said, “Mom I live in paradise, we have our dream jobs, I have the house of my dreams. But I’m not happy.” My son-in-law said, “If you want to move we would move.” They were able to move back and got great jobs. When she came back, she appreciated her family even more. Because of Johnny’s disability, she had no quality of life. When she got out of work she needed to cater to him. She had no support.

Dorothy has been a great support to her daughter and Johnny, but she and her daughter are both left trying to understand why Johnny is on the autism spectrum when her daughter did everything right during pregnancy. Now technically, you are playing Russian roulette when you get pregnant. You don’t know what’s gonna happen. You can live the best life. My daughter was like, “I did everything right, I didn’t do drugs, I didn’t drink. I went to the doctors regularly. There are people who are drug addicts and have healthy kids. Why?” I will never know. I’m sure it will be something we will be chasing for the rest of our lives.

Sometimes I Wonder, Why Did She Have to Have Two Kids with Down Syndrome? Some families have multiple children and grandchildren with disabilities and that can lead them to ponder “Why me, why us?” Colleen, age 62, wonders why two of her nine grandchildren have disabilities. Seven year-old Sam and two year-old Kit have Down syndrome. Colleen worries about her daughter handling two children with Down syndrome and she is particularly glad she is able to provide so much grandchild care and a good ear when her daughter needs to refresh. I always think about my kids, worry about them, like any mother, but I do think about my daughter and her situation a lot. Sometimes I wonder, why did she have to have two kids with Down syndrome? But she does. And she is doing a good job. But every now and then she will have a meltdown. But then she moves on. She shares her stories with me.

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It Cannot Be Random. . .Am I Ever Going to Have a Normal Grandchild? Indeed some grandparents have asked “Why me?” on multiple occasions. Barbara is white, attended some college, and is married to a man who she says has four children and three grandchildren all of whom are “perfectly healthy.” At 67, this mother of three reports that all five of her grandchildren have been diagnosed with disabilities including ADHD, autism, and other physical and mental conditions. Since all of Barbara’s grandchildren have been diagnosed with some types of disabilities, she blames her genetics. Obviously, it’s on my side because of the other two kids with autism. The oldest one with autism is 16. He’s Asperger's. He’s very high-function. His is more of the social thing. He doesn’t have too many friends. He’s kind of a geek; really into science. Sometimes with the autistic kids they just have their little nook.

Barbara has devoted a lot of time puzzling how she could possibly have five grandchildren with disabilities. As she explains their various diagnoses, it is clear she does not agree with some of them. Nonetheless, she feels genetics must be at play. I think genes are involved. Two of my other first cousins have grandchildren who are autistic. It cannot be random. My children are very normal. I don’t understand. Am I ever going to have a normal grandchild? My oldest child has two girls and a boy. The oldest one, his daughter, has a lot of medical problems; asthma, skin problems. She is 16 and she has Asperger’s. And my other son’s daughter is 12 and she is the light of my life. I will never, ever agree with what they are saying about her, that she has bipolar. My other grandson is nine and supposedly also has Asperger’s which that one I don’t believe. I think he’s just spoiled rotten. I really do.

All Five of My Grandchildren Have Disabilities Some grandparents do not ask “Why me?” because they are certain they already know the answer. Violette has five grandchildren, all of whom have disabilities. She is sure the reason is her daughter’s poor maternal health and drug addiction. Violette is a mother of two and has five grandchildren ages two to 13. She has lived with her boyfriend for the last 13 years. All five of my grandchildren have disabilities. My oldest granddaughter, Noelle, is 13 and has a PV Shunt due to a shaken baby syndrome. She has PTSD and ADHD. The second oldest, Giselle, is six and has CP. She can walk but she has difficulty with her muscle tone. Then there is Hope and she is four years old. We got custody of her two years ago. She has reactive attachment disorder. It is from birth, because the mom was not going to the doctor and getting the nutrients she needs.

Violette says the underlying causes of her grandchildren’s’ disabilities is their mother’s bipolar disorder and use of illegal substances to manage her symptoms, mostly opioid derivatives. Violette has diabetes and a bad back from an injury she sustained as a nursing assistant. She currently has custody of all five grandchildren because her daughter goes in and out of rehab and the judicial system. My daughter was abusing drugs so she goes to a special school. I have a three-year-old J who hasn’t been diagnosed yet but he has a reactive attachment disorder. He has some autism and he has Pica. He eats everything. He will eat glue and if you put anything in front of him, he’ll eat it, if it smells good or looks good. They are all from my daughter. Then there’s Carlson; he’s two and he hasn’t been diagnosed with anything yet but he

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still can’t talk and he has trouble with his fine motor skills. He’s learning how to talk. He was a late bloomer, walking. The three little ones were all in foster care for over a year. She was on drugs with all five of them. I have full custody on all five of them. They all live with me.

What Are We Going to Do to Make It Better? It is important to remember that many grandparents, in fact most that we interviewed, never ask why. Kelly made a point of telling us that she never for a moment asked why. Kelly’s granddaughter, Maya, age seven, has cerebral palsy and Kelly believes that Maya is with them because they can give her the best possible life. I never said why. My first reaction was what are we going to do to help? I think that was our attitude right from the start. . .I’m used to it, so my reaction is what are we going to do to make it better?

Diagnosing Disabilities The process of obtaining and accepting diagnoses can be challenging for many families. Even when healthcare professionals are proactive and forthcoming, and families are accepting of their analyses, responding to disabilities can usurp a great deal of time, energy, and money. When healthcare professions are unresponsive and confusing, or health care is difficult to access, the process can command more resources than many families can bare. When families are conflicted or point fingers, tensions may flare. Grandparents rich and poor told us of a wide variety of frustrations and challenges in the process of diagnosing and re-diagnosing their grandchildren as the years passed. Though they never used the word ableism, some faced ableism by medical professionals or family members and recounted their unremitting efforts to overcome discriminatory or negligent behavior. They minded that these efforts usurped precious time and resources. But even more, they minded that the lack of prompt, thorough diagnoses, or acceptance of those diagnoses, resulted in delayed therapies and treatments.

Notes 1. Guest et al. (2019), Cadwgan and Goodwin (2018), McDowell (2018), Yang et al. (2018), Findler (2014, 2016), Aston et al. (2014), Barnett et al. (2012, 2014), Dworzynski et al. (2012), Miller et al. (2012), Sullivan et al. (2012), Watson et al. (2011), Woodbridge et al. (2009, 2011), Lee and Gardner (2010), Green (2007), Margetts et al. (2006), Schilmoeller and Baranowski (1998), Scherman et al. (1995), Welcome to Holland http://www.our-kids.org/ Archives/Holland.html 2. Guest et al. (2019), Cadwgan and Goodwin (2018), McDowell (2018), Findler (2016), Aston et al. (2014), Barnett et al. (2012), Dworzynski et al. (2012), Watson et al. (2011), Woodbridge

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3.

4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.

4 Diagnosing Disabilities et al. (2011), Lee and Gardner (2010), Schilmoeller and Baranowski (1998) and Scherman et al. (1995). Guest et al. (2019), Cadwgan and Goodwin (2018), McDowell (2018), Aston et al. (2014), Barnett et al. (2012), Dworzynski et al. (2012), Watson et al. (2011), Woodbridge et al. (2011), Lee and Gardner (2010) and Schilmoeller and Baranowski (1998). Lee and Gardner (2010) and Schilmoeller and Baranowski (1998). Anderson (2010). Guest et al. (2019) and Margetts et al. (2006). Margetts et al. (2006: 570). Guest et al. (2019), Hillman et al. (2017) and Woodbridge et al. (2011). Guest et al. (2019), Stuart (2018) and NECTAC (2011). Disability Rights Movement (2018). NECTAC (2011) and Araujo (2009). Kaiser Family Foundation (2018a, b, c, d). Center for Disability Rights (2018) and Marshall (2015). Center for Disability Rights (2018), Marshall (2015), NECTAC (2011) and Araujo (2009). Center for Disability Rights (2018) and Marshall (2015).

Chapter 5

Moderately Intensive Grandparenting

Historically, parental and grandparental roles were quite different. Parents were responsible for daily care, schoolwork, doctor visits, and discipline while grandparents were responsible for trips to the park, ice cream counter, or matinee.1 Over time these once divergent roles have converged for many, but certainly not all, families. Studies have noted that as parenting has intensified, so has grandparenting.2 But the intensification of grandparenting may be for very different reasons. While parenting intensifies primarily as parents try to assure their own children competitive advantages, grandparenting appears to be intensifying primarily due to unmet need. Many families in the US have only one parent, or no paid vacation, paid sick leave, parental leave, or affordable, flexible childcare. Desperate to balance work and family obligations, families often turn to grandparents for assistance. When children have disabilities, these trends are magnified because families have fewer childcare options, more health care expenses, and more care work demands.3 The dearth of supports for families of children who have disabilities often means that grandparents do even more. As cumulative inequality theory points out, the costs of providing more intensive care may be more readily absorbed by families with higher incomes and educations, but may be more difficult to absorb for families who are already struggling to make ends meet. We did not ask grandparents if their roles had intensified, rather we asked them what they do when they are with their grandchildren with disabilities. They reported a wide range of activities ranging from meeting the school bus to providing aroundthe-clock supervision of oxygen lines and feeding tubes. The definition of intensity varies widely in the literature; our definition is linked to both the numbers of hours of care they are providing and the types of care they are providing. We refer to routine care for grandchildren as assistance often needed for grandchildren with and without disabilities, including assisting with feeding, bathing, medicating, and homework. We refer to routine care for grandparents as daily activities that grandparents must perform to take care of their own lives, including buying groceries, cooking, cleaning, paying bills, exercising, and arranging doctor visits. We refer to intensive supervision as more constant than routine supervision. We mean the sort © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_5

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of minute by minute supervision needed for a child who is prone to dart away or have a violent outburst. We refer to intensive medical care as performing therapies, taking grandchildren for medical care, monitoring feeding and oxygen tubes, and transporting with wheelchairs. All respondents in Chapters 5 and 6 are providing routine and intensive care. Care work may be intense when grandparents are providing many hours of care; it may also be intense when they are providing more specialized types of care such as constant supervision or technical medical care. Our respondents told us so many stories that we divided them into two groups. Here, in Chapter 5, we focus on moderately intensive grandparenting. Their work is more intermittent and routine. Some grandparents provide moderately intensive care occasionally, some according to a regular schedule, and some around-the-clock. In Chapter 6 we focus on extremely intensive grandparenting. Their work is more constant and medically sophisticated; they provide routine daily care as well as constant supervision and help with complex medical treatments and equipment. In both chapters, some grandparents have driven long commutes, given up jobs, or moved to be available to provide needed care to their grandchildren with disabilities. Several, often those with fewer resources, have become legal guardians or custodial grand parents. Very few of the grandparents we interviewed ever imagined they would be providing this much intense care. Many told us that they were not getting to wear grandparent hats; they were too busy wearing parent hats.

Moderately and Extremely Intensive Grandparenting Sociologists point out that mothering has intensified in the US.4 This begs the question: has grandmothering specifically, and grandparenting generally, also intensified? Hays (1996) suggests that for about three decades we have been in an era of increasingly intensive mothering in which mothers, even if working, are encouraged to invest a great deal of time and energy into raising their children. While mothers of all races and classes are pressured to intensify mothering, studies suggest that middle-class and upper-class women are most likely to cultivate their children through specific efforts encouraged by parenting experts. Modern U.S. families are centered around children and mothers feel obliged to prepare their children for success in a highly competitive world. Do intensive mothers expect, prefer, or become, intensive grandmothers? We do not really know. Harrington Meyer’s (2014) interviews with 48 working grandmothers suggest that many U. S. grandmothers are providing more care and support for grandchildren than they expected to provide, and more than their parents provided. Using HRS data, one study noted that 27% of grandparents report providing about 100 hours for at least one grandchild over the last two years and the percentages were higher among Blacks and Hispanics, 29% and 30%, respectively.5 Studies link the intensification of grandparenting to broad sociodemographic trends including increases in single parenting, working parents,

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childcare costs, substance abuse, and custodial grandparenting and our respondents confirmed all of these.6 Grandparent roles may further intensify when grandchildren have disabilities. As we noted in Chapters 1 and 2, childhood disability rates are rising but neither the federal government or employers are providing benefits to help families balance work and childcare. As a result, many US grandparents who have grandchildren with disabilities find that their grandparenting roles are converging with parenting roles as they increasingly provide more frequent and more intense assistance with feeding, bathing, dressing, toileting, schooling, therapies, medications, doctor visits, mobility and other daily activities.7 When grandchildren have disabilities, grandparent care work is magnified, particularly in single parent families. Data from the 1996, 2001, and 2004 panels of the Survey of Income and Program Participation (SIPP) reveal that schoolchildren with disabilities from single mothers spend nearly 50% more time in grandparent care outside of school hours compared with those without disabilities and from two-parent families.8 As we demonstrate in this chapter and the next, many of the grandparents we interviewed are providing more, and more intensive, care for grandchildren with disabilities than they ever expected. Here we analyze moderately intensive grandparenting for grandchildren with disabilities. We find that some grandparents, typically those who live further away or who work full-time, provide intensive care work occasionally. Others, who generally live nearby or work fewer hours, provide intensive care work on a regularly scheduled basis. And some, typically those who cohabitate or live very close, and who work little to no hours, provide intensive care on an around-the-clock basis.

Occasional Care Work Some grandparents provide moderately intensive care infrequently. Their care work occurs in bursts. It is sporadic either because they are not needed on a regular basis or they live too far away to provide care except intermittently. They provide a wide variety of types of care that, for the most part, is similar to care they are providing to their grandchildren who do not have disabilities. I Do Take Her to All Her Doctors’ Appointments Some grandparents live nearby but are not needed on a regular basis. Rather, they are called upon for specific needs. Indeed, though Kelly’s duties have changed over the years, she has one specific task she handles all the time. In the early years Kelly did nearly everything, but as the grandchildren have aged, she tends to mainly take them to their doctor appointments. Not all doctor’s offices are accommodating for children with disabilities, hence this can be a stressful task.9 Kelly, age 72, provides the most assistance with her granddaughter Maya, who has cerebral palsy. Kelly started taking Maya to all of her medical appointments, even those that are out of state, early on.

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5 Moderately Intensive Grandparenting Then her mom got pregnant with the second baby and was on bed rest and I had to take her to all her therapy sessions. I’ve gone out of state three times. I was there for the surgery and I was there for the other appointments and I always go with them.

Now that Maya is seven and at school much of the day, Kelly does very little sitting. But doctor visits are high on her to do list. I don’t do as much on a daily basis anymore but I do take her to all her doctors’ appointments. I also take her younger brother to all the doctors’ appointments because their mom does not like doctors’ offices, she doesn’t like to watch her kids getting shots.

I’m the On-Call Grandmother Betty lives nearby but is called upon only when needed. Now 63, Betty retired early and moved closer to her grandson Carl, who has Williams syndrome. Now that he is five, Carl goes to pre-k every afternoon and his mother, who is not employed, calls on Betty whenever she needs her help. Often these calls come at the last moment, yet Betty always says yes. I see Carl several times a week, sometimes just his older brother, sometimes both. I help with a lot of errands. I run kids where they need to be. I go over in the evenings when my son-inlaw is gone, and some weekends when he is gone, and I stay dinner through bedtime and help with bedtime. My older grandson introduced me to someone as his extra mom. I’m the on-call grandmother. I don’t have a set schedule.

Betty does not mind the last-minute requests; she responds on a moment’s notice. Often the requests involve a lot more than caring for Carl; recently she returned packages to the store and purchased groceries. I get phone calls, the whatchadoing calls, I call them. My daughter calls, “I was wondering if you could?” and I say, “now?” And I go. Friday, she called and said, “I have a cake in the oven, can you take Carl to school for me? Can you return packages to the store for me? Can you pick up groceries?” Sometimes she asks, “Can you watch the boys tonight? Can you help this evening?” The calls are sporadic. Whatever needs to happen, it happens.

When they are together she plays a lot of educational games with Carl to facilitate cognitive development. Cognitive impairment is hard to judge yet since he is only in pre-K. He knows his letters and can count to at least 20. He recognizes numbers. Seems to grasp adding things together and subtracting them. He loves puzzles, which is surprising with Williams. He tells wonderful involved stories, which is not surprising with Williams. He has speech therapy but that is about all.

Betty never had any intention of retiring early, moving near her daughter, or caring for her grandchildren. She never imagined she would be providing intensive grandparenting. I never dreamed I would be living here and retired. I figured I would still be where I lived before and would retire there. I never dreamed I would be as involved on a frequent basis as I am now.

As She Gets Older She’s Very Sensitive Jennifer, age 60, has been an occasional babysitter since her daughter decided to stay home after she gave birth to her third child. Now she watches all three kids whenever her daughter and son-in-law want to go out.

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It’s not even every week, only if they get a chance to go to dinner or a wedding or something. I try to do something with each kid. I’ll bring them to dance and OT if my daughter can’t. Now it’s basically a social thing; if they want to go to dinner or go out.

Providing intensive care often means struggling to find ways to cope with unhappy grandchildren. Some grandparents find that a particular symptom or time of day is especially challenging. Jennifer worries about how to respond to two yearold Tina’s sensitivity. Tina has cerebral palsy and her sensitivities seem to be intensifying with age. The one thing I do notice about her is that she’s overly sensitive. As she gets older she’s very sensitive. I think it may be part of her disability. She cries a lot. She’s not whiny; she’s just sensitive.

We Went to Get Ice Cream Because She Loves to Get Ice Cream Grandparents who live far away may provide intensive care but only for fairly brief periods of time. The amount of care that Martin provides is extensive, but only for two weeks each year. Martin is a 64 year-old white married retired father of nine and grandfather of 28, who has an MS degree. This is his third marriage and he has a large extended family across the US. Three of his grandchildren have Asperger’s, one has bipolar disorder, and Lara, age four, has Down syndrome. Though they do not provide hands-on care for their other grandchildren, each summer Martin and his wife spend two weeks helping to care for Lara. He says they have no intention of moving to be close to Lara as long as his daughter and son-in-law are good parents and financially secure. He says he values self-reliance. But he enjoys extended visits, during which he and his wife spend a lot of time caring for Lara. They arrive early each morning to help her dress and eat breakfast, take care of the dishes and the backpack, and then spend the day with her at school. We spend the duration of time at the school with her. And, go all through her activities with her. Be like a teacher’s assistant. We did that every day for two weeks. And, then we’d bring her home. Fix lunch. Help her take a nap and read to her. We’d play around on the floor. We’d help clean up. Visit with her mom. Let her mom lay down if she wanted to. . .Go for a walk. Get an ice cream. Go back and play some more games. Get ready for dinner. Clean up the dishes. That’s about it and then I’d go home. It’d be about a 10 to 14-hour day.

Martin and his wife like to make the most of their two weeks per year with Lara. He says they take Lara everywhere, for walks, concerts, and ice cream. We love going for walks. She loves to walk. So, we’d put her in her stroller, take her out and go for a walk. We went to a concert, and she loves music. And, she let me know it was too loud, and I wanted to take her up front, and she’d hold her ears. We went to get ice cream because she loves to get ice cream.

When We’re Together We Babysit So the Parents Can Do Their Own Thing Similarly, Frank and his wife provide intensive care when they visit for a week at a time. Frank is a 73 year-old father of three and grandfather of six. Frank’s oldest grandchild, AJ, age 11, is on the autism spectrum. Frank and his wife are very much involved with AJ and his family, even though they live in different states. Frank communicates daily with his son, AJ’s dad. Frank and his wife visit his son’s family six times a year for about a week to help with AJ’s care.

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5 Moderately Intensive Grandparenting When we get together, it’s normally for a week, it’s a lot of interaction. When we’re together we babysit so the parents can do their own thing. We sleep with him, bathe him, toileting, feeding, and all that stuff when they’re here.

AJ is non-verbal. He was first diagnosed with ADHD at two and one-half yearsold and then was diagnosed with autism. Frank says they are all working to be able to improve communication. They often know he is upset but are not able to ascertain what is wrong. They are also working to improve his sleeping and toileting. The care work comes in weeklong bursts, and it is intensive. He has all of the mood swings of a normal adolescent, and then there’s the inability of him to communicate about what his problem is. He sometimes gets really agitated and starts crying and we don’t know what the problem is. Oftentimes it’s something pretty simple like he has a stomachache or he’s hungry, or has to go to the bathroom. So that creates a little bit of anxiety because you don’t know what’s wrong with him. Many nights he has a lot of trouble sleeping so in the morning he does a little bit of a chant. So that’s when you have to get up and find out what’s going on. He’s still incontinent which is a big issue.

When He Is Mad He Is Very, Very, Very Strong, Hard to Control Him Grandparents who are still working, and who live far away, often try to squeeze in as much care work as they can manage during occasional visits. Heidi says she would provide even more care if the drive did not take half an hour. At 59, Heidi works over 50 hours a week. She took time off from when Max, now four, was born with Down syndrome and was in the NICU. Though she lives 30 minutes away, she regularly takes care of all the grandkids when their parents want a date night, a holiday, or to take care of household chores. Heidi and her husband usually watch Max at their own home. She says he is very social, but not very verbal. They devote a lot of energy to communication, toileting, dressing, and playing. He needs help being verbal, doesn’t talk much. He gets frustrated because they don’t know what he is trying to tell them. He has his own way of signing and often they do not know. So he gets frustrated. He’s not potty trained. They have not started that. He eats well by himself, it’s all over the place, but he can use silverware. He’s a good eater. He’ll tell you when he is done. He goes to the snack cabinet, at his house, and pulls out his snacks. He needs help getting dressed but not much help undressing. He will play with cars and some of the toys. I have never had him sit down to color. He loves to watch some of his TV shows, and sing with those shows. He plays with toys.

As he grows, Heidi ponders the best ways to care for him. For example, he has outgrown his crib, but when her daughter’s three children come for a sleep over this weekend, she wonders whether he will stay in a bed without sides. He usually goes to bed by 7:30. I rock him and put him to bed and he will sleep till 8:30 in the morning, he is a good sleeper. I have him in a porta crib here. I think he is too big for it now. Not sure how he will sleep when he comes this weekend. Maybe I will put all three kids down at once, and keep him in a low trundle bed. I might be up half the night just making sure they are all asleep.

They love to take Max and the other grandchildren on outings, but it can be challenging. Last fall we took all four of the little grandkids to a pumpkin patch, it was exhausting. Because Max wanted to be out of the stroller but could not be unless we held his hand. And

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he would run off, try to get away. It was a long day, trying to keep track of all four little grandchildren. Probably not the wisest decision. They slept well that night. They had a lot of fresh air, and a lot of fun. Max got worn out, tried to sleep in his stroller.

They often take Max to the park, he loves to be outdoors. Increasingly it is hard to keep him safe and challenging to contain him when he becomes angry. He does not like coming inside the house at night in the summer. This summer we had our first scary incident. His older brother and his friend were playing, and their mom went inside for a moment, and when she came out, Max had run off. He was across the street, a very busy street. He thought it was a game, running away as they tried to catch him. Then he tried to do it three more times that night. They had to take him inside and he was furious. When he is mad he is very, very, very strong, hard to control him. He is mad, trying to jump out of your arms.

Though it is only occasional, Heidi’s care work is certainly intense. She would happily watch Max more if she lived closer; living 30 minutes away constrains their time together. But she plans to retire at age 62 and then help with Max and the other grandchildren more often. I Love Watching Him on My Own Jane also commutes to provide occasional, intense care for her grandson one weekend a month. She enjoys spending time with him and is eager to follow in her own mother’s footsteps. Jane, age 50, works full-time. She lives eight hours away yet she sees 17 month-old Jay, who has Down syndrome, monthly. When Jay was born, his father was deployed, so her daughter came to live with her for the birth. She continued to live with Jane and her husband when Jay was in the NICU for three months and for several months after his release. So he was here near us for the first six months of his life. I got a really good bond, this baby really knew me.

Her daughter’s husband is still deployed but now they live eight hours apart. So once a month they get together either at Jane’s or Jay’s house for a long weekend. She says Jay has been army crawling and she thinks he is about to stand and cruise along the furniture. He needs PT and OT to develop fine motor skills and speech. She plays actively with him to encourage his development. With my job, I have some flexible time and so I can take long weekends to go see him. . . We get down on the floor and play, engage him. We go on walks with him in a stroller. We take him out to see the horses because we live on a horse farm. We will walk along with him, hold him on the small pony and we lead him. We take him to the zoo or birthday parties, parks, restaurants, stores, whatever we can do.

She feels the long drive each month is worth it to spend time with Jay. Jane is very comfortable caring for Jay and encourages her daughter to go out, even since her son-in-law’s deployment. I love watching him on my own. . . Especially before he was deployed. I would say, you go on a date and I will stay here with him. I feed him, change him, do the bath with all the toys, let him play in the bathtub. I brush his teeth, make his food, give him drinks.

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Her own mother was a hands-on grandmother and Jane always wanted to follow in her footsteps. I don’t really consider it taking care of him, I chose to see him, I want to be in his life, and they are military. I don’t really mind. Financially it would be nice to work part-time, I guess this was the plan. My mom was a role model, very active with the five of us and our older nieces and nephews. She was extremely active and helpful. I always wanted to be the kind of grandmother that she was.

I Don’t Want Them to Think That I’m Going to Be There All the Time Some grandparents set limits to minimize how much care they will provide, though they often seem to bend their own rules. Mia certainly does. Mia is a 66 year-old white, married, retired mother of two and grandmother of three, who has a BA. She cares for all of her grandchildren, including Cally, age 13, who has mild Down syndrome. She and her husband are both retired and take care of Cally and her younger brother whenever they have a day off school and during summer vacations. When we retired we moved here so that we could help with Cally. . .And we are very happy with that decision. . .We wanted to be close enough to help and yet not so close that we are in their everyday lives. I do what I want, and I’m doing plenty. I’m doing more than some of my friends and less than others. I’m doing what works for us and our family. Once my daughter-in-law called and asked me to take Cally’s brother and keep him while they all had the flu. I wanted to be able to be there in 20 minutes and help but not there every day. We go to school functions for the kids, and we go to grandparent day. I don’t want them to think that I’m going to be there all the time.

Mia has no regularly scheduled times that she cares for Cally, rather she steps up whenever needed, which is usually several times per month. When Cally was born she needed open heart surgery and my son asked me to come out when she comes home from the hospital, so I could do that. I wasn’t even in the house an hour and my son and daughter-in-law said, we need a break. Can we go the gym and can you take care of Cally. Of course. That is what I love to do. She will always be very special. I only had boys. She is the first girl in the family. She is special.

Time with grandma and grandpa is mostly fun and games. They love to bake, go out for breakfast, go to movies, and color. Our daughter-in-law has to go by our house to get to work and so she drops them on the way and picks them up on the way home. We take them for overnight. When we have just Cally we always bake. She love baking. She says she is going to own a bakery when she grows up. We always bake. We always go out for breakfast every Sunday morning and so when we have the grandkids we take them out to breakfast too. We will go to movies, or just stay home and play. Cally loves to color those intricate adult coloring books, she has one book that no one else can do. She is working her way through that book. We have a lot of different toys at our house and she likes to play Uno.

They also help with homework and reading. Mia loves spending time with her granddaughter unless the activity is math. Math is a struggle. If you put three apples on the table and two apples on the table and ask her how many she has to count 1 2 3 4 5. For her, 3 and 2 don’t make 5. She is one room behind in school, so she is in sixth grade instead of seventh. She does well reading, not her first choice though, you have to encourage her. She likes being read to.

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Cally has a mischievous sense of humor, particularly when it comes to grandpa, and Mia enjoys it immensely. She always gives my husband the princess coloring book to do. When she wants to color, she decides we are all going to color, she assigns the books. She will change mine around, and hers around, but she always gives my husband the princess book.

Regularly Scheduled Care Work Most grandparents we interviewed are providing care according to detailed schedules. Many described exhaustive calendars of work, school, and medical obligations to which all three generations then try desperately to adhere. These calendars are ever-changing, whether due to employment demands, school holidays, sick days, or emergent medical problems. Despite the schedules, the time and locations grandparents are needed are ever-changing as well. Most of the grandparents strove to be flexible, available, and responsive. None wanted to leave their grandchildren with disabilities in need of attention. I’m Basically on Call Some grandparents provide regularly scheduled, extensive care that changes as their grandchildren age and are able to do more for themselves. David used to provide care daily, now it’s more often twice a week. Partially retired, 75 year-old David says caring for Bill, his 16 year-old grandson, with cerebral palsy is his top priority. He works around Bill’s schedule. Every Tuesday and Thursday I meet the bus when he comes home. And when he was really young I would get him ready and dress him and put him in his chair and take him to nursery school and bring him home. I would go over and put him on the bus in the morning and meet the bus in the afternoon when he was in elementary school. Certain weeks it was every day and certain times it was every other day or whenever they needed me. Now I’m basically on call.

David say that spending time with Bill adds meaning to his life; he does not define care work as a chore. He loves that he is retired and in good health that he can spend a lot of time with Bill. He would not dream of missing their nightly phone calls. Being retired, I have the time to spend with him so I’m able to devote more time to him and I became very close to him. I still am. He calls me every night on the phone. Every night he has to talk to me.

I Go Down Every Week. . .on a Wednesday Morning and I Come Back on Friday Morning Some grandparents commute on a set schedule to be available for portions of, or entire, weeks. Jean is a 70 year-old, married, semi-retired artist, mother of three and grandmother of three. She lives in a neighboring state and travels one and one-half hours every week to help her daughter who has a son, David, with Down syndrome and two other children. David’s parents are well-off financially and they work high

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end jobs that require quite a bit of travelling. They have a part-time nanny and Jean who comes to help two days a week. I go down every week. . .on a Wednesday morning and I come back on Friday morning. On Wednesday afternoon I pick David up from school and to his speech therapy. They live in a big city. It is different than the small town where I live. It takes a long time to go from one place to the other. I do that on Wednesday and on Thursday he was taking horseback-riding lesson too. It is really good for him because of the Down syndrome. It is good for core strength. We will probably be taking swimming lessons on Saturdays. . .It’s not really necessary for me to go down and be the chauffeur but I will continue to do that anyway. The three grandchildren like to have me, to have grandma around.

With Ava It Helps a Lot If You Let Her Know What Is Going to Happen Some grandparents have a certain day that they will be caring for their grandchildren with disabilities. For Bree, it is Wednesdays. Bree, age 76, works part-time and lives just 15 minutes from her granddaughter Ava, age 13, who has Down syndrome. At least once a week, Ava comes to Bree’s after school for a snack and then they go to swimming lessons together. In the winter she often takes Ava to gymnastics. Because Ava’s mom’s schedule changes a lot and she usually works nights and sleeps in the day, Bree is called on to help a lot. Bree often goes to their house and helps with homework, reads simple books with Ava, and helps her overcome the frustrations of math. She says sometimes the homework is inappropriately hard, but they do the best they can. Usually they get along quite well, as long as Bree prepares Ava by telling her what will come next. With Ava it helps a lot if you let her know what is going to happen. When I pick her up I tell her, remember we are going to go home and you will go to the bathroom and wash your hands, and we will have a snack before the swimming lessons. She is very good about that. I set up what is going to happen and then we do it.

Bree tries hard to avoid confrontation, employing a variety of techniques, including asking what would a princess do. Once in a while she gets in a snit, and I have to be creative. In most cases, she will not respond to logic. I have to reinvent a way to get her to change her behavior. For instance, she was doing something inappropriate, instead of saying stop this, I will say, if you were a princess this is not the kind of thing you would do. And she will ponder this and then stop.

The hardest task is helping with dental care. Ava sees the dentist frequently and wears special braces to address problems with her teeth. Managing child care for so many dental appointments, and keeping her teeth clean, is a multi-generational challenge. Bree often watches her daughter’s younger twins so that Ava’s mom can take Ava to the dentist. There are a lot of appointments. And it is very hard to clean her special braces each night.

A Great Big Village Raising These Kids Some grandparents provide primarily afterschool care, often five afternoons a week. Colleen, age 62, works full-time and watches her daughter’s three children, including seven year-old Sam and two year-old Kit, almost every day after work. Two of them attend day care in the building where Colleen works, so she often helps with

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pick up and take home. If the kids do not have school, Colleen stays home from work to watches all three of them. When the kids have school holidays, or sick days, or when the day care is closed, I watch my daughter’s kids. Then I usually have all three of them. And I do watch all three of those kids often.

Sam and Kit both have Down syndrome. Colleen and her husband used to help more, but now Sam’s mother has enrolled in a program10 that provides a self-direct care provider for Sam after school each day and sometimes on weekends. Whenever Colleen is watching either of them, she provides a lot of hands on care. She says Sam is able to dress himself but not able to bathe by himself. With Sam, her biggest challenge is bed time, mainly because he is reluctant to sleep when she is there; they are very fond of each other. The most difficult thing is putting Sam to bed. When he is with me, he has a hard time winding down when I’m there, to go to sleep. I try to put him to bed, and I walk out, and he will walk out. I don’t know if he just wants to spend time with me. His mom says they don’t have this trouble. But he has a hard time winding down with me. Last time, he kept coming back out of the bedroom, so I tried laying him on his parent’s bet to watch TV and that did not work. So, we went downstairs and we just chatted. He is like that with me, but not with his parents. His parents may be more strict.

Like any two year-old, Kit requires much more assistance. She feeds herself, once I put the food in front of her, and it’s messy. She will go after toys she wants to play with. She will help me dress her, put her arm in the sleeve, her leg in the pants. I don’t take her on outings much. If it is just her and me, we might go to the store.

Compared to her friends, Colleen says she provides more care, partly because she has nine grandchildren and partly because two have Down syndrome. But she says the family pitches in, taking turns watching the grandchildren. It’s a huge village of people, not a small village but a great big village, raising these kids.

When He Is Here We Do Lots of Arts and Crafts, Painting Grandparents who live very close often provide care more often, even if they, themselves, also have disabilities. At age 46, Ina has a serious back injury from her 20 years as a nurse and is partially paralyzed from the corrective surgery. Though she is medically retired and receives Social Security Disability benefits, she and her husband care for Ray, age three, who has Down syndrome, several times a week. My daughter and family live five minutes away, very close and I love it. Ray has Downs and does not talk much, but he signs everything. If I teach him a sign in the morning he knows it that afternoon. To me he is super smart. I think he know a lot more than people think because he does not say as much, but he expresses it though signing. I’m so glad we taught him sign.

While the sign language facilitates smooth communication, Ina worries is might be delaying his speech development. Ray does not talk much but I think it is partly lazy, because sign language is so easy. He will say milk but he would rather sign it. So now we make him say it so before we give him the milk. I think he can say a lot more than we think. He would rather sign it because it is easier.

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When she is caring for Ray and his little sister, she organizes interactive activities aimed at spurring development. I have a teaching background so I love to structure. So when he is here we do lots of arts and crafts, painting. He loves to learn, we do animals, dancing, sign language. His little sister started walking at seven months and she follows right along. I think because she knew grandma could not pick her up, so she just started walking. I’m really impressed about how these kids are.

Though she is unable to drive due to her injury, when her husband is home they take the kids on outings, and really treasure the Tiny Tumblers programs that include all children.11 They do a lot of tumbling and walking on beams and gymnastics. We take them to kid museums, the zoo, we take them anywhere.

It Is Hard for Me to Lift Him Though Anna lives one and one-half hours away from Jason, who has Down syndrome, she provides care regularly. But as she has aged, she has noticed that providing care and supervision can be particularly difficult when children with disabilities age and become heavier to carry. This may be particularly true for grandchildren who are prone to receding into their own private thoughts. Mobility can be difficult for Jason and lifting him, now that he is seven, is becoming increasingly difficult for Anna. He has very severe cognitive delays, and some physical problems. He walks but has braces on both legs. He can spin his legs around backward, so the braces keep them in line. Something is wrong in the hip. Also, he is very small, he looks about four years old. . .I take him out in a large buggy, he does not do well walking. If you take him out on foot he will just sit down on the sidewalk and not move. It is hard to get him up of the sidewalk. I put him in the buggy and take him for a walk, so he gets fresh air.

At 66, Anna says she is in good health, but as Jason grows, handling him is growing more difficult. It is hard for me to lift him. He is kind of heavy but he is a good climber. And an escape artist. He can get out the bottom of the play pen, out the bottom of the crib. He can climb out of the buggy and bathtub. If you take his hand he can step over the tub and get out. It is not a very tall tub. So that helps me with the lifting. Because he is very solid. He is slim but solid muscle.

Anna says that Jason likes to use blocks to make shapes, and doing so helps calm him. He grows agitated and then searches for a sock to help reduce his anxiety. But sometimes he will get really agitated and pick up a sock and just shake the sock and make verbal noises and we can’t reach him at that point.

When Jason grows agitated, he will sometimes stop communicating with Anna and everyone else. She works very hard to keep him tuned in rather than letting him retreat. He goes into his own world. We have to distract him and bring him back to where we are. He goes off to his own world and shakes the sock. He will search for a sock. But we try not to let him go off to his own little world. We try to keep him engaged. The most difficult thing is to get him to respond.

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We Moved Because We Wanted a Better Future for George Some grandparents move with their entire extended families so that they can provide regular care for their grandchildren with disabilities. Programs and supports for children with disabilities vary widely by state residence. Unhappy with the services available in their home state, Linda and her husband retired and moved with their daughter and her two sons to a state where there would be better schools, services, and health care for George, who has Down syndrome. We moved because we wanted a better future for George. Better health care and better schools. He does not have heart issues, no major health issues, but even to get vision and hearing his mother was having to drive four hours away. She looked at the big picture for his future and we moved to a place with better schools and medical care. She gave us a choice of two cities and we had a family vote. There seems to be more opportunities here probably because of a larger population.

Linda takes care of George three days a week. Now that George is five, she picks him up after school and takes him to therapy and then home with her until his mom retrieves him. She works closely with the therapists, often receiving flash cards and instructions for the week, and then relays the information to George’s mom. Whenever needed she takes George and his brother. However, she does set one limit: she does not babysit for date nights. If there are days off school that his mom is not home, then I have both boys. I’m the one. I’m the person. The only time I do not are what I call date nights. A local church has respite care and they take both boys to the respite care, and then they have three hours to go out one night a month. They don’t charge, they do it as a community service.

She says George has difficulty communicating, though she thinks he probably understands more than they know. She is currently paying careful attention to toileting and eating. We are still in the process of complete potty training. He is able to eat independently but he’s very picky. There are just a few things he will eat. We keep those on hand. He plays independently.

Transitions can be difficult. Picking George up from school can go very well and she relishes those days. If George is having a good day, then when I get to school to pick him up, he will typically want to greet, say certain parts of words to identify us or his friends, say good bye, and therapy will go well, he will be cooperative. We have a refrigerator drawer with kid snacks and he will get what he wants. And we go upstairs and play.

Alternately, pick-ups can be quite challenging. As he grows larger, his physical antics become more difficult for Linda to manage. At times she is injured during the attempt. On a day when he wants to bolt, run, typical for Down syndrome children, that is harder. He is big enough and sometimes what he thinks is fun and he is laughing hysterically at you, it is a tough situation. Sometimes it is hard to get him into his car seat. He will jump from one side of the car to the other. If he does not want to get in to the seat, it is hard. He will be adamant that he is not going to do something. He can be stubborn. I automatically take off his shoes in the car before I get behind the wheel because he will use them. He will throw

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Linda is creative about employing techniques that maximize the chances that their time together will go well. But there are always uncertainties. Typically George has good days. Especially if it is just him and me. It’s harder when there are a lot of people. He can get shy. Never sure what his reaction will be to other children, other people.

Linda takes him on outings to open spaces and uses a tether so that he can be somewhat independent and yet not get away from her. I take him to the library and playground and to swim. But I have never taken him to a closed space. His parents do, he loves the museum. I have never taken him to a closed space because I’m not sure what his reaction will be. He may be fine. But if a little girl’s hair gets in his face he may pull the hair. It is the impulse thing that you can’t predict. They have a tether to use as a security for a buddy walk for his safety, he seems to like not having to hold your hand. With the tether, he can move about more freely. I have never had an issue.

Whatever the challenges, Linda would not have it any other way. Though she says the paternal grandparents are not, she is very comfortable caring for a grandchild with a disability. In fact, she gained quite a bit of experience as a dental hygienist working with clients with disabilities. As a dental hygienist I always worked with special needs kids, from a group home, so I had always been around it, I have always been very comfortable with it. I don’t see it as a negative.

I Want to Help Her Out As Much As I Can Because She’s a Single Parent Grandparents tend to provide more frequent and intensive support when all three generations cohabitate—and when their adult children are single parents. Rachel is a 61 year-old, white, single, high school educated, mother of one and grandmother of two. She cares for Sandra, age 16, who has autism. Sandra’s mother, a single parent, moved in with Rachel when Sandra was three years old. Rachel works full-time at a local factory and she comes home and splits the household work and caring for the grandchildren with her daughter. I want to help her out as much as I can because she's a single parent. You gotta take it together and two people are better than one. . .I tried to share the responsibility with my daughter to do it 50-50. This way it gave her a break and I helped take care of her like she was my child. For example, I do the cooking and laundry.

Rachel also helps with doctors’ visits on days that her daughter cannot take off from work. Since Rachel has worked at the same factory job for many years, she has accumulated many more vacation days and more flexibility than her daughter. Studies show that because they tend to have been on the job longer, grandparents may often have more job security and flexibility than their adult children.12 It is no wonder that they provide so much child care on snow days, sick days, or school holidays.

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I have to help my daughter or when my daughter can’t get off of work so I can take Sandra to the doctors or something. I will take the time off because I have more time that I can take off when my daughter can’t.

I Have to Be More Vigilant with Him and Be More Careful For some grandparents, intensive care involves careful vigilance. At 71, Maria’s mobility is limited due to a recent knee replacement procedure. While watching her grandson Marco, who has Prader-Willi and asthma, she needs to be alert at all times. One of the manifestations of Prader-Willi is insatiable appetite. Children with that condition are always looking for food. Caregivers have to be on the lookout. Maria has put special locks on her refrigerator and pantry to prevent Marco from accessing her food supply. We have this thing on the brain that control when we eat. They don't have that at least it doesn't work. They always hungry, always hungry. No matter how much you feed them they are always hungry. . .I have to be more vigilant with him, of course. Even if I'm in the living room and he is downstairs in the basement, I have to keep watching him so that he doesn't sneak into the kitchen.

She laments about the challenges she faces while babysitting Marco. Like many with his condition, he is prone to frustrations, temper tantrums, compulsiveness, and stubbornness. Maria recalls an incidence when Marco became really angry toward her and said, "I don't understand you, you are no good." It's not like he really means it. It just that he is hungry, he wants to eat, you are refusing them. They go into this tantrum, you know, this temper tantrum. That's the most challenging thing.

I Would Say Usually 20 Hours a Week, at Least Maureen spends about 20 hours a week with her granddaughter Madge, who is 20 and has autism. At 76, Maureen is providing more care than ever, even though Madge probably needs it less as she is getting older. The reason, in part, is that Maureen is now widowed and Madge is good company. I cook for her. I used to toilet her. I used to make sure that she washed her hands. I used to do a little bit more of what you would do with an average child, once you teach them, you can send them on their own.

Maureen is enjoying different activities such as cooking, baking, art projects, shopping, and going for walks. I had her Friday, Sunday, all day Monday, yesterday afternoon. They are going out socially tomorrow night and I would have her then.

Maureen sets up her schedule around Madge’s. Maureen fills in whenever Madge’s companion or parents are not available. Since Maureen’s husband passed away recently, she spends even more time with Madge. It can vary depending on what their schedule is. Certain weeks it can be a lot, like this week. I would say usually 20 hours a week, at least.

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Though she enjoys spending times with Madge, Maureen has to be very vigilant. Madge is a runner and has taken off in the past. Maureen must provide extra supervision. She had to be watched all the time. She was a runner. When she gets out of sights, she would take off. So we had to have locks put in all the doors, up high, so she couldn’t get out of the house. At night when she stayed here, her bedroom door has a latch on the back to keep her in the bedroom. Because she could get out in the middle of the night and get out and you wouldn’t know.

Around-the-Clock Care Work Some grandparents coreside with their grandchildren either because all three generations live in a single household, or because the grandparents have become defacto or legal guardians and the middle generation lives elsewhere. In these cases, grandparents tend to be providing a lot more hours of care, though the care itself may not be much different than care they are providing for their grandchildren who do not have disabilities. I Am Like Her Big Playmate Sometimes Tessa provides care almost daily; it’s easy to do so since they all live in one house. Tessa, age 61, shares a house she bought for herself, her daughter, and her only grandchild, Leila, who has Down syndrome. Tessa lives upstairs and Leila, age six, and her mother pay rent to live downstairs. All three generations are together daily. Every day, I get her off the bus and we have snack. Depending on her mood sometimes she wants to play, other times wants to get her stuff and go in her room and slam the door on me. If she is more social, she will want her music on and dance in the mirror and pull you over and want you to dance with her. I am like her big playmate sometimes.

Leila loves music and dance, and every Thursday Tessa takes her to ballet. In addition to watching Leila after school most days, Tessa watches her when she is home sick, so that her mother can go to work. Last week she was home sick and had ear infection. She will come up here or we go down to her house and fix a bed on the couch and she likes to watch PBS cartoons. You want to pamper them when they are sick. She likes to play games, have lunch, a snack. Typical day. She still takes a nap. She is constantly moving. She is not one of the Down kids that are relaxed and quiet. She is always going. That is pretty much what we do. She likes to come up here. She will ask her mom, she will say “I want Nani” when she wants to come up here and play.

It is not all fun and games. Sometimes Tessa has to play the disciplinarian. They are actively discouraging inappropriate behaviors. I do have to discipline her a lot, she will do things most kids do. I treat her like a normal child except I have to keep in mind where her cognitive ability is and adjust that as if she is a three year-old. . .We work with the defiance. We have to teach her that just because she wants you to do something does not mean you want to do it. Lately she has been doing raspberries and

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we have to try not to react because they are funny, and we don’t want her to do them. She does hit.

Tessa and her daughter work a lot on skills like dressing and toileting. They are trying to maximize her independence. You help her put her pants on part way, and she can pull them up herself. She got potty trained this summer but still goes poop in her pants. We are trying to teach her to tell us before she does it. She will help put her shirt and coat on. She does not do zippers, buttons, snaps. She can do Velcro shoes, can put her shoes on. She does not tie yet. If you put her foot in the boot, she can pull it up. My daughter is a special education teacher, a substitute teacher, and she works with her a lot.

Tessa takes Leila on outings frequently, with and without her mother. They enjoy shopping, museums, festivals, and have a great deal of fun. I take her grocery shopping, and she likes to do that. I go on her field trips. Yesterday we had a field trip to the aquarium. I went on the field trip. She had a blast feeding the koi fish. She got focused on that, something she likes. We had to redirect to other things that are there for her to see. We do a lot of stuff with her and her mom. For the Renaissance Fair, we all three dress in costume. Downtown we go to the wine and cheese festival, anything that looks fun. We go as a family.

The three of them eat dinner together almost every night, alternating between the upstairs and the downstairs homes. In addition, Leila occasionally spends the night, particularly if her mother wants to travel. Then Tessa takes care of her around-theclock. She spends the night sometimes. Last month, my daughter went away with friends to Disney for a cooking and wine thing. And Leila stayed with me for a week. And so I stayed downstairs at her house get up early and did her hair and get her ready for school and the bus. All of that stuff.

The family is preparing to make their interactions even more intensive. Tessa’s daughter is applying to take another foster child. Though Tessa worries about them all becoming very attached and then having the child returned to parents, she feels it is worth it. They don’t want Leila to have only child syndrome, and they know there is so much need. I think it’s a good idea that she takes on another foster child. But if she takes a baby and gets attached and it is taken away, I hate to see her get her heart broker. But she says she is up for it. She knows the kids will go back to the parents, but a lot of kids need a home, and a lot of kids need love. And I will definitely help. It’s fine, I love kids. I came from a family of seven. I would have had more children if I could have.

Within Seconds She Is Crying and Telling Me All About How Her Day Was Like many grandparents who obtain legal custody, Donna provides around-the-clock supervision and care for her two grandchildren. Currently, homework and social pressures are the most difficult challenges she faces. Donna is a 63 year-old, white, retired social worker, married, mother of three biological children and two adopted grandchildren. She has an MS. Donna’s middle son has a substance abuse problem. He has four children who have lived in foster homes. Donna and her husband petitioned Children’s Protective Services to obtain custody of two of the children, at the ages of four and three. Sally, now age 11, is diagnosed with adjustment

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disorder and ADHD and Tony, now age ten, is diagnosed with ADHD. Donna was enjoying being an empty nester and working full-time. But when they gained custody of the children she retired from her full-time job and became a stay-athome grandmother. She had to get reacquainted with raising children, contemporary curriculums, and modern day mean girls. My most challenging days with the kids are when I don’t understand the homework and there are lots of tears and frustration especially with the girl because she has so much trouble with school. She has a lot of peer issues so when a most challenging day will happen she will come home from the bus and I can see she is not happy and within seconds she is crying and telling me all about how her day was, normally social issues. My strategy is to sit down and really talk about it. I’m constantly trying to find ways to strengthen her self-esteem and give her coping methods and things to do with it.

The Most Challenging Thing to Go Through Is That She Is OCD Jacki also became a custodial grandparent and now provides around-the-clock care and supervision. At age 65, Jacki’s life is very different than she ever imagined. Jacki and her husband adopted her nine year-old granddaughter, Mona, who is diagnosed with ADHD, when her daughter lost custody of all four of her children due to mental health issues and drug addiction. For Jacki, the greatest struggles right now are how to respond to her granddaughter’s strengthening OCD tendencies. The most challenging thing to go through is that she is OCD and she will get into an activity and that will be all she wants to do. If she gets on her tablet, that’s all she wants to do all day. It’s difficult to break her from one activity and say you’ve done that enough, now we’re going to do this. Once her mind is set, she is logged in until she decides to change. The hardest thing with her is getting her into a routine that is flexible but still enough of a routine so she doesn’t get too absorbed in one thing.

Most Challenging Thing During My Day Is to Get Him Ready for School Carole is also a custodial grandmother and finds mornings to be the hardest part of the day. At 74, Carole has custody of three grandchildren, including Nico, 11 years old, who has autism. She strives constantly to keep him on task and to reduce frustrations. Most challenging thing during my day is to get him ready for school. He needs help to get his socks and shoes on. I have to plan my day to make things happen. The other challenging thing for me is to teach him to do stuff. It is usually hard for him, to provide him opportunities to do things for himself. I usually go ahead and do it for him. He has zero frustration tolerance. His attention span for anything he can’t tolerated is zero. He gets frustrated. More things are frustrating to him than other kids.

We Have Lost Our Grandparent Hats, We Are the Parents When grandparents become guardians or custodians of their grandchildren with disabilities, the care is most certainly intensive. Kim, age 59, and her husband are sole legal guardians of two: Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. They had no intention of becoming custodial grandparents but felt they had little choice when Kim’s step daughter, who has bipolar disorder and is a heroin addict, lost contact with her five children. Kim gave up her career to care for two of the grandchildren, and now just works a few hours a week from home. Her husband, desperate to keep his full-time job despite layoffs, has been

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commuting to another state for work for the past four years. Thus, Kim cares for her step-daughter’s children by herself every Sunday through Thursday, and with her husband on weekends. Currently she focuses on helping Izzy with school work and college plans Izzy struggles in school, she will do well for a while and then will start not turning in papers, and wait to do things, and then goes into this mode and get it all done to pull her grades up to C or D level. But she is capable of doing a much higher grade level. It is confounding to us. . . .She says she wants to be a nurse, but this year she says, “I think I might not go to college for a year or so.” She is worried that we can’t afford to send her, and her grades are messed up. So she says, “I will just work and go to school later.” We are having that discussion now. She is 17 and nearing independence. We tell her she needs to go to school, college, something.

Because she has ADHD, and because she has been through a lot growing up with a mother who has serious mental health problems, Izzy struggles to maintain friendships. Fearful that she might follow in her mother’s footsteps, Kim also focuses on supervising Izzy’s social life. Socially she is not good, she does not open up much. Not many people know their story and that is intentional. She got in with the wrong crowd last year and we managed to dodge some bullets there. She has some good friends from church now but she does not go to the high school stuff, only one dance. She is invited but says no to a lot of stuff. She is not comfortable with large crowds. We tell her to have friends over and she does not. She might be embarrassed because she is being raised by her grandparents. We live in a wealthy area but we live frugally, we don’t have all the stuff other families have.

Similarly, Kim focuses on trying to help Matt with school work and social issues. Matt has struggled all the time in school, he repeated kindergarten twice, and nearly had to repeat first grade twice. He likes to be there, but attention and focus is a huge challenge for him. It’s been a struggle the whole time. He has moderate ADHD with impulsiveness. He is getting better but he does not have boundaries and gets in people’s personal space. He is teased a lot. Both these kids are gorgeous, just beautiful, and people respond to them. But Izzy pushes them away and Matt is just too much. But he is very empathetic; he will always include kids who are left out. He will organize a game and include the kids who would be left out. He is very social and everyone loves him but the boys his age, only a few are friends and they are also ADHD.

One of Kim’s most difficult challenges is helping Matt deal with being teased, about a wide range of issues. He gets teased a lot because last year he had bathroom issues. He is teased because he is not riding the latest bicycle. They tell him that he doesn’t have a dad or a mom, that we are not his mom and dad, that we are his grandparents. He is taunted. They both get a lot of social kickback about being raised by their grandparents. He calls us mom and dad.

Kim said she and her husband very much wish they could just be grandparents and not parents. They try to set aside time occasionally to just play with the kids. Kim’s own parents did not help when her own children were young; her father died young and her mother made it clear that they were adults and needed to care for their own children. Kim laments, “She would never babysit them, that’s for sure.” By

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contrast, Kim is always actively involved with her grandchildren, happy to babysit, but never imagined she would have custody of two. I wish we had time to just play with the grandkids. We have lost our grandparent hats, we are the parents. We wish we could just play with them. Izzy remembers when we were just grandma and grandpa. She told us she misses when we were just her grandparents, she does not want us to be her parents. She respects us for what we are doing and she is grateful for it. But she misses her grandparents. We need some days where we take the parent hat off and just be grandma and grandpa, and we are trying to do more of that. That has helped all of us.

I Am Sole Guardian, I Do Everything Elsie has also lost her grandmother hat; as sole guardian, she provides intensive care on a daily basis. Elsie is a 62 year-old white mother of one and grandmother of one, who has some college. Never married, she adopted a daughter at age nine who had ADHD and learning disabilities, and later used drugs. Initially her daughter and grandson Curt lived with Elsie, but when her daughter stole money to buy drugs, Elsie told her to leave and kept Curt. Elsie is Curt’s sole legal guardian, unemployed due to disabilities, and struggling to support them both on just $23,000 a year. Curt, now age 11, has ADHD and learning disabilities. She keeps very busy taking Curt to all of his activities. I am sole guardian, I do everything. I take him to school, some days he goes to after school program. He is in a lot of extracurricular activities. We go to a kinship caregivers group once a month. He volunteers in a preschool classroom two days a week and we do that together, he works in the preschool room and I in the infant room as volunteers. Sunday we go to church. He does not do athletics, not an athletic kid. He has cub scouts, and we are waiting for a match with Big Brothers. He does engineering for kids, robotics.

As his guardian, she must also take him for all of his medical care. He is in very good health, so he rarely goes to the doctor, but he has to go for med review because he is on meds for ADHD. So he has a yearly physical and goes every three months for med review.

They have a lot of fun hanging out together. Any free time, she takes him out for his favorite activity: fishing. Usually we take day trips or weekend visits to friends that live elsewhere, we go to see relatives, or we go on a day trip. Hs most favorite thing in the world is to go fishing and we spend a lot of time going places so he can fish. We will go for just the afternoon or for the weekend. He is rather obsessed with it. If he is going to be obsessed with something fishing is not a bad thing. He likes things to do with nature, we go to the local nature center. We do geocaching, using the app, like a treasure hunt. He likes that a lot.

One of her biggest challenges is helping him with social activities; he struggles to get along with other children. He does struggle with friends his own age. He is in a social skills class. He tends to be bossy, he has a hard time picking up on social cues. That is why I have him in the afterschool class three days a week, to help him work on those skills. He enjoys playing with other kids but he tends to get on their nerves, he tells them what to do, everything should be done his way. The adults say that he is usually right, but it is not well received by his peers.

Another challenge is to help him learn to be able to sit still, especially at school.

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Anything where he has to sit for long periods of time, those are hard for him to do. We can go to a museum that is hands on but, at the planetarium, to sit through the long presentation, he just can’t. So that can be hard at school. But his year he is in a brand new school, the other school closed because it was old, and the new state-of-the art school has a lot more hands on activities. The kids are up and moving about, and so that is really helping him. It’s awesome. I wish he would have that next year in middle school too. He has a male teacher, that is just great.

Neither of his parents are permitted by the courts, or by Elsie, to watch Curt. And she has no other family or friends who can help either. So, with only a very few exceptions, Elsie has done it all with virtually no respite. There is no one else, really. It is generally speaking me. If I have appointments I have someone who will watch him for an hour but it never happens. There is no one to take him for overnight or a weekend, so I do not get any real break. He is not the easiest kid to be around, so it would be hard to get a sitter and I don’t have the finances to hire a sitter anyway. So we just hang out. I have been with him pretty much every night of his 11 years. He has gone away on some scouting overnight trips, so he has been away a few nights.

I Have to Be Very Specific Lizzy, a custodial grandparent who provides moderately intensive care, struggles most with how to respond to her grandson’s lack of concentration. Lizzy is a 55 yearold, white, divorced, mother of one and grandmother of three, who completed high school. Her oldest grandson, Mark, who is 12 and has ADHD, has lived in her custody since he was two months because his mother was addicted to drugs and his father died of a heroin overdose. She says he struggles with school work because it takes him longer to understand things if he is not focusing. His medications help but they reduce them in the evenings, weekends, and summer and then she needs to be very specific and repetitive in her instructions. He gets a giant burst of energy and he is all over the place. The doctor says I can give him melatonin to help him sleep, and I do give him a half pill. I have to repeat myself a lot, you know, it’s time to take a shower. I have to tell him to get in the shower. I have to be very specific. I tell him that it has to be quick. It takes him awhile to get undressed and it will be 15 minutes later and he is still taking off his clothes. I have to keep repeating it, make sure he gets in, make sure he gets out. I keep saying, I told you a quick one. It is getting easier as he gets older.

Mark has struggled in each grade, for various reasons including the difficulties of the common core, his fourth grade teacher, and changing classrooms each period in middle school. With each challenge they have tried raising the medication levels to help him concentrate better. As custodian, Lizzy takes him to all of his doctor appointments and meets with all of his teachers. His real passion is sports and she takes him to practices and competitions constantly. She wishes they had more and better sports teams in Florida. He loves baseball. He plays baseball in the community; he tried for the school basketball team but only two people made it. I’m thinking about moving to Pennsylvania this summer because I want to know my granddaughter and I think he should know his sister. And they have better sports programs for him there. I moved here to FL because I did not have a job and my dad lived here. But unemployment is high here and there is not much for him or me here.

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Though academics are a struggle, social activities are his forte. Lizzy does not have to worry about how he will be around other people He does great with friends at school, kids that are older than him, younger kids. There are some neighbor kids that love him to death, he teaches them sports. He is very kind, will help older people at the store. He helped an older lady reach stuff on the top shelves. He will put their carts back for them. He loves helping people. He is very, very kind. He has empathy, even at kindergarten. His kindergarten teacher said he has empathy and that we don’t see that much in kids so young.

Though a lot of their time is devoted to school work and sports, they have a lot of fun together as well. We go to the movies, we go out to eat, we play baseball some, he taught me how to throw really good. We went to a baseball game. For the holidays we went to see the pretty lights, on the tour. We go to the park, to the beach and the pool.

The most challenging time comes at the end of the day when they are both tired but his medications are wearing off. Bedtime is hardest because it takes so much time. He gets a burst of energy as he is coming off the meds from the day and I have to get him in the shower and ready for bed. He has to get up early for school. And the homework is getting harder. He will be good for a while and then this week three nights in a row we were doing homework at 9:30 at night because he had said he already did it but he had not. I took away his iPod and phone. I’m having a hard time with some of these sneaky things that are happening all of the sudden. I caught him on the phone when he was supposed to be doing homework, so I take the phone now as soon as he gets home from school.

The sneakiness is particularly worrisome because by far her greatest concern is that he might do drugs. His mother was clean until she was 16 and then became addicted very quickly. Lizzy does not want her grandson to follow his mother’s example. It’s Not Hard, Only When He Has a Bad Day Denise is a coresidential grandmother who provides about 50 hours of care each week. Like many grandparents, she finds that the care remains just as intensive as grandchildren age, but the duties change from year to year. At 55, Denise has been unemployed since she lost her job 11 years ago. She lives with her only son and grandson. Every day of the week she cares for Nelson, age ten, who has autism and ADHD. She provides constant supervision to be sure he is safe, helps with dressing and toileting, takes him to doctors, cooks and cleans, gets him on and off the school bus, and helps with homework. She says it has gotten easier as he has aged because there are fewer tantrums and he is able to do more things by himself. What seems most difficult, however is another disability that she says remains undiagnosed. She says he has Oppositional Defiance Disorder and does not follow directions or do as he is asked. He doesn’t know the word no. He knows what it means, but he’ll do things anyway. I don’t even know how to explain that. Say, you told him not to get a snack, he will get it anyway. He doesn’t realize he’s being wrong. He’s just hungry and he wants to eat. So, that can complicate a lot of things. That’s one of the trials that we go through.

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Her own son was never diagnosed, but she sees now that he probably had mild autism. Her parents helped her a great deal when she was raising her son as a single mom and she is glad to be helping her son raise Nelson as a single father. She is focused on increasing independence as Nelson ages but it’s challenging when he becomes defiant and hotheaded. Because he’s gotten older, he can do things himself like get dressed. Get himself a snack. I still fix his lunches, he’s not quite able to put everything together, we’re working on it. We’re teaching him about the microwave, trying to get him there. But it’s kind of a slow process because I think he knows everyone will do it for him. He’s getting there. . .I don’t have to watch him as intently as I used to. So, it’s easier. It’s not hard, only when he has a bad day. . .and they can be pretty rough because he gets verbally defiant. He can be rough.

On good days he will ask her how she is doing, on bad days he will close his bedroom door and keep to himself. They have to supervise all of his gaming and TV choices because he is drawn to things that are inappropriate. For example, he was watching YouTube episodes of people pooping. Sometimes when he is rude, Denise says she will be rude back to him, so that he sees what it feels like. Denise says that although many with autism do not express empathy, he sometimes will and then be less rude at least for a while. They are working on getting a diagnosis for Oppositional Defiant Disorder, so that they might be able to get more treatment for it. She feels that he is outgrowing many of the challenging symptoms but worried that the defiance might become more problematic with age. Like he knows he’s supposed to go to school, but he won’t do it, he wouldn’t do it. Given a choice, no. You know? Do you think those ODD behaviors will become a problem as he gets older? Right now, I’m not sure. It could go either way. It’s a serious concern on my part. He has shown signs of improvements in other areas that make you say he might be okay. But, and then there’s some that he’ll go back to. And it’s like, ehhhh, we might have problems when he gets older.

She said his behavior changes depending on what is going on. For example, he occasionally spends time with his mom and when he comes back, she says he is much more mouthy and defiant. He becomes much more defiant and hot blooded during the school year and, as a result, has difficulty making and keeping friends at school. She keeps a close eye on his relationships at the bus stop, for example, because he is not one to back down from a fight. She says he has a very difficult time telling her what happened or why he is upset. She has to be very patient and keep asking, slowly working the information out of him. With Nelson, you could spend hours and hours and hours, and still not get anywhere. He might not even realize if someone is picking on him, he might not realize—he could still consider them a friend. I think it’s because of the autism

She says puberty is around the corner and he will be dating soon. The girls already like him, and she is worried about how that might go. For now, she focuses on the good days. The best days are when he wants to talk with her and be affectionate. She treasures his hugs and their chats on the good days.

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Maybe This Coming Summer I Will Get to Be the Grandparent Sometimes custodial grandparents find that they can relinquish their roles if their adult child has stabilized. Candi raised her granddaughter since birth, but now is allowing her granddaughter to experiment living with her mother. Candi is tentatively trying on her grandmother hat. Candi’s oldest granddaughter, Aly, age 12, had low birth weight due to maternal and paternal drug and alcohol use and has ADHD. Candi and her husband sued for custody of Aly shortly after her birth. Now widowed, Candi is finding it more difficult to be custodial grandparent as both she and Aly grow older. Aly’s ADHD and asthma symptoms are becoming more complex and pronounced. But of the many challenges, math homework may well be the most insurmountable. After my husband died I went back to full-time work. Aly would come home from school, and she would be doing homework till nine at night, in fourth and fifth grade. It was a struggle and you could understand why she would be so distressed and so upset. She was going to school all day and struggling all day, to do what she needed to do and make it right. She would be upset and angry. I would be on the phone with my daughter saying. “I don’t understand this math.” I was constantly going to the school to get help with the math. Why is there so much homework, on top of the ADHD, and then the homework.

Candi is one of many grandparents who bemoaned both the amount of homework and the apparent senselessness of modern math, particularly for children with disabilities. There has to be some time to be kids, some time to have time out. When I was in school, even high school, we never had homework like this. And the math makes no sense. The answers are the same but the things they make them do now to get the answers. They make no sense. For anyone. And then for a child who is struggling, they have to go through all this stuff. The things they have them doing don’t make sense. If you have ADHD, this is a totally different ballgame.

As Aly has grown older, the homework presents even greater challenges. Candi is not convinced that the school’s homework expectations are realistic or appropriate. The homework is always the biggest challenge. . . She hated school and school work, the older she got the more she struggled. The harder it got for her and for me. If you could take the extra homework away as they got older, take that pressure away, it would be a different ball game. Everyone needs to go to school but they have to learn that children with other issues need them to go about it a different way. The transition to this school here was really hard and we have struggled for three years.

Recently, Aly’s mother has developed a more stable life and asked that Aly live with her. Wary, they decided to do a four-month trial and move Aly to her mother’s, ten hours away. Thus far the transition has been smooth; Aly’s mom has remained off drugs, and the new school is less challenging and less frustrating. Candi misses Aly desperately but is optimistic that this new living arrangement might be best for all, as long as she retains legal custody and can step in if needed. Freed from aroundthe-clock duties, and the perils of modern math, Candi is pondering what it might be like to finally just be a grandma. I never got to be a grandparent and not the mom. I have always been the mom. Maybe this coming summer I will get to be the grandparent.

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Moderately Intensive Grandparenting Grandparenting has become more intensive in the US and this may be particularly true when grandchildren have disabilities. The intensity of grandparenting is defined by both how many hours, and what types of care, they provide. Some provide the same types of care they would provide for their grandchildren who do not have disabilities, and they do so either occasionally or according to a regular schedule. Others provide a great deal of care that would have been historically defined as parental care. And many do so around-the-clock, particularly if they have taken legal guardianship or custody. Still, these are moderately intensive stories. As cumulative inequality theory suggests, families with more resources and fewer stressors may more easily take intensive care in stride. But families with fewer resources and more stressors may find it difficult to sustain such unexpectedly high levels of care. Grandparents who commute long distances, move to new towns, change jobs, reduce work hours, retire early, or become coresidential or custodial grandparents may find that the challenges overwhelming. In the next chapter we hear from grandparents who are providing extremely intensive grandparenting.

Notes 1. Harrington Meyer (2014) and Cherlin and Furstenberg (1992). 2. Harrington Meyer (2014), Lareau (2003), Hays (1996) and Cherlin and Furstenburg (1992). 3. Merrick et al. (2018), Samuel et al. (2017), Kahana et al. (2015), Hogan (2012) and Sullivan et al. (2012). 4. Yang et al. (2018), Nelson (2016), Elliott et al. (2015), Folbre (2012), Glenn (2012), Hogan (2012), Aumann et al. (2010), Gladstone et al. (2009), NAC and AARP (2009), Neal and Hammer (2009), Rubin and White-Means (2009), Bittman et al. (2007), Harrington Meyer and Herd (2007), Heitmueller and Inglis (2007), Wang and Marcotte (2007), Brody (2006), Elder (2006), Moen and Spencer (2006), Wakabayashi and Donato (2006), He Waldrop and Weber (2005), Carmichael and Charles (2003), Evandrou and Glaser (2003), Lareau (2003), Settersten (2003), Evandrou et al. (2002), Stoller and Martin (2002), Ashton (1996), Wilson (1987) and Cantor and Little (1985). 5. Silverstein and Lee (2016). 6. Bureau of Labor Statistics (2018), Merrick et al. (2018), Yang et al. (2018), Carrillo et al. (2017), Samuel et al. (2017), Abdul-Malak (2016), Brandon (2016), Kahana et al. (2015), Harrington Meyer (2014), Coontz (2013), Heymann et al. (2013), Hogan (2012), Luo et al. (2012), Sullivan et al. (2012), Lerner (2010), Baker et al. (2008), Lareau (2003), Minkler and Fuller-Thomson (2001), Hays (1996) and Cherlin and Furstenburg (1992). 7. Hillman and Anderson (2019), Merrick et al. (2018), Samuel et al. (2017), Blacher et al. (2016), Findler and Taubman-Ben-Ari (2016), Green et al. (2016), Noy and Findler (2016), Kahana et al. (2015), Woodgate et al. (2015), Harrington Meyer (2014), Kresak et al. (2014) and Lee and Gardner (2010). 8. Merrick et al. (2018), Samuel et al. (2017), Brandon (2016) and Kahana et al. (2015). 9. Feldman (2013). 10. NY state Office for People with Developmental Disabilities. 11. http://www.tinytumblersonline.com/index.html 12. Harrington Meyer (2014).

Chapter 6

Extremely Intensive Grandparenting

Grandparenting children with disabilities can be intensive.1 Generally, the degree of intensity in the care work is linked to the degree of severity of disabilities. As we demonstrated in Chapter 5, for some grandchildren, care work is moderately intensive; challenges may indeed be challenging but can often be taken in stride. The work includes mainly routine grandparenting such as helping with transportation, school work, meals, dressing, medications, and outings to the zoo. Grandparents who perform moderately intensive care work tend to do it in intermittent bursts, according to arranged schedules, or around-the-clock. In Chapter 6 we focus on extremely intensive care work. For these grandparents, care work is extremely intensive, requiring nearly all competing activities to be put on hold. Some grandparents provide intensive supervision, some provide intensive medical care, and some provide both. Grandparents must continue to provide routine care for themselves, including preparing meals, cleaning, paying bills, working out, and visiting doctors. In addition, they must provide assistance with routine tasks for their grandchildren, such as feeding, bathing, dressing, toileting, and medicating. And in addition to all of that, these grandparents provide constant supervision or handle specialized medical equipment and treatments such as feeding tubes and oxygen tanks. The days and nights may prove to be long, and the stresses on aging bodies too much. Various factors make the care work even more intensive. In some cases, care work is even more intensive because federal laws are not enforced. For example, though federal law requires public buildings to be accessible, these laws are not usually applied to apartment buildings, thus some are not able to obtain ramps to their apartments. When ramps are not provided as needed, some grandparents do a lot of heavy lifting up and down the stairs and spend their time fighting for ramps. In other cases, care work is even more intensive because poverty-based programs tend to emphasize gatekeeping and red tape rather than stable coverage. For example, though they are eligible, some are not able to sustain Medicaid coverage from one month to the next, or get Medicaid to cover needed therapies and treatments. And in other cases, grandparents provide care even though their own health problems making doing so very difficult. As their stories demonstrate, many grandparents © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_6

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care for grandchildren with disabilities even though they have health problems of their own. Some grandparents have curtailed paid work, moved, or taken custody of the grandchildren to provide extremely intensive care. As cumulative inequality theory suggests, those with more income and education may have more resources, options, and expertise dealing with schools, medical professionals, ADA laws, or poverty-based welfare programs. Similarly, they may have more resources, options, and expertise in securing care while protecting their own financial, social, emotional, and physical wellbeing. Conversely those with less income and education most certainly have less resources, options, and expertise to face the challenges involved in extremely intensive grandparenting.2 Nonetheless, no matter how intense the care work, nearly all of the grandparents we interviewed emphasized enriching activities that would encourage the development and inclusion of their grandchildren.

Intensive Supervision What makes grandparent care so intensive for some is that when they are caring for their grandchildren with disabilities they must provide constant supervision. Some grandchildren are prone to running, some need to be kept on a strict schedule, some are in pain or discomfort, some have violent outbursts, and some require attention during the night. Grandparents still need to provide routine care for themselves such as managing their households, finances, and medical care. They still need to provide routine care for their grandchildren, including preparing meals, doing laundry, providing transportation, and helping with schoolwork. But in addition to all of those duties, and perhaps more important than any of those duties, they need to keep one eye firmly, at all times, on their grandchildren with disabilities. Babysitting Is a Full-Time Job When They Are Not in School For many grandparents, caring for grandchildren with disabilities means constant supervision, even if in small doses. This is certainly the case for Dorothy, whose grandson tends to bolt and is then nearly impossible to catch. Dorothy, age 59 has been a great support to her daughter to help with her grandson, Johnny, age two, who has autism. Dorothy devotes a great deal of time taking care of all five grandchildren. When Johnny was diagnosed, her daughter and family moved closer to her for help with Johnny. I would take vacation days to fill in. The point was she couldn’t trust anybody to babysit him. Only us, family, could watch him. When he was little, we called him “the escape artist.” He was a runner. He could be out of the door in a heartbeat. He has gotten out so many times. If he started running, you couldn’t catch him. My daughter was afraid to let anybody babysit him. You couldn’t trust a full-time babysitter let alone a teenager. . . I used to use my vacation days, sick days, and holidays to watch him.

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I Try to Be Inventive to Figure Out Things She Can Do Many grandparents told us that even though the day-to-day care requires constant supervision, they make time to emphasize therapeutic play that will encourage physical and cognitive development. No matter how overwhelmed she might be, Marina is one of many who emphasizes growth and maturation. Marina, age 60, continues to work part-time and to commute 25 minutes to care for Carly, age two, who has Williams syndrome. She is the bookkeeper for the family business, working about 15–20 hours per week, because she needs to be flexible to care for Carly and the rest of her five grandchildren. For a while, she watched one granddaughter five days a week, another two days a week, and a grandson two days a week. Then I said, I can’t do this, it is too much. I could not keep three kids at once. So, Carly’s older sister kept coming here but the others went to their other grandma. Then I started watching Carly four days a week but I said that was too much and so now I do three days a week.

Marina’s schedule is very detailed, and yet it is in a constant state of flux depending on the availability of other possible care workers, school and work schedules, and everyone’s health. Her typical day begins just after 7 am and runs until nearly 5 pm. She watches Carly three days a week and then Carly and her sister often after school, weekends and in the summer. At age two, Carly does not walk or talk. Marina gives her constant attention partly to be sure she is safe and partly to provide as much enrichment as possible. She makes a point of creating games that will help Carly strengthen some of her weaker skills and prepare her for preschool. She says her house is like a nursery school filled with toys for Carly. She will cry and be upset at my house sometimes, but not typically when we are playing. She enjoys playing, and her attention span is not long, like all kids. So, with everything I do, I see what I can do to challenge her. . . Williams kids don’t tend to look up and track things very well, so I play peek-a-boo, and I run up by the fireplace, so she has to look up for me. So she has to track me.

Marina says her approach to grandparenting Carly is the same as her approach to her other grandchildren but more interactive and intensive. I parent Carly the exact same way I parent the other grandkids. She requires more of my time. While the others will run around, I have to actually play with her. Sit and show her. She does not speak or walk. But if you sing a song with her, like the wheels on the bus, which is her favorite, she can’t really clap her hands through the whole song. She gets too tired. So, she will grab my hands and make me help. She can definitely learn. She can communicate. You know what she wants.

After the Three Little Ones Came, We Have No Break at All When grandparents take custody of grandchildren, supervision and care may be required around-the-clock. Violette has custody of all five grandchildren because her daughter, who struggles with bipolar disorder and drug addiction, goes in and out of rehabilitation and prison. All five grandchildren are diagnosed with various disabilities. Violette has diabetes and a bad back from an injury she sustained as a nursing assistant, thus providing constant care and supervision usurps virtually all of her energies.

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We don’t have a social life. My boyfriend works so he intermingles with others. He goes after all the kids are sleeping. He has his quiet time then. But I wouldn’t know what it would be like. After the three little ones came, we have no break at all.

Violette is exhausted from taking care of all five grandchildren. Though only 46, she looks like she is in her 60s. She outlines her morning routine. Up at 6:30 in the morning. Noelle and Hope probably have already gotten up and gotten into everything like normal. I get Giselle up because she sleeps with me. Unfortunately, it’s a bad habit she got a long time ago and poor boyfriend sleeps in a chair. I get Carlson and Giselle up, I get J out of bed, we go downstairs together, take our medicine, hair done, dress all five of them up because twice a week the youngest ones go to daycare. Carlson goes to daycare first and then 15 minutes later J and Hope go to school. . .and then another 15 minutes later the two older girls go to school.

Maintaining such a strict schedule can be nearly impossible. And the entire operation can be derailed if the oldest child begins to watch TV. Everything has to be in its spot. With the kids that we have, we need repetition constantly. It has to be that way or they can’t function. The oldest one stares at the TV. Due to the brain trauma injury, she has one eye that is far sighted and one eye that is near sighted so she has to be right on top of everything to see it. The rest of them follow so I have five kids staring at the TV.

She Has to Be on a Really Strict Schedule. . .We Have a Routine Several grandparents talked about reducing the stress of extremely intensive grandparenting by making, and adhering to, a strict schedule. To slide off schedule is to risk some very volatile hours or days ahead. Joyce, age 61, lives with her granddaughter, Mindy, age 13, who has DiGeorge syndrome. Though her father has legal custody, Joyce and her husband care for Mindy around-the-clock. Mindy’s mother was declared unfit, she sees her father weekly, but Joyce and her husband help with each step of Mindy’s daily care. She’s just learning to shower herself. . .she can dress herself. But, it takes a while. Like, something might be on inside out or backwards, but she can do that. We have to remind her to brush her teeth, and all that kind of stuff. She’s on clonidine which is a—helps her sleep. And, she’s on an anti-anxiety medication just for behaviors which have improved tremendously. They have—by far.

They handle all academic and medically related appointments, treatments, and therapies. Mindy attends special education classes at school. Caring for Mindy has gotten easier as she ages. She came to live with them, initially as a foster child, at 14 months and was not walking, and had a feeding tube. She would meltdown quickly. She might turn over the breakfast bar chair. So, she might scream and holler, she’ll stomp down the hallway. She’ll slam her bedroom door. She’s real good at upsetting that chair at the breakfast bar. She likes to do that. It used to be we couldn’t take her out. And, we couldn’t go to the store or out to eat because you never knew what her behavior might be. So there was always one of us home. But, she’s, that’s not the case any longer. She can go.

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In fact, for the past two years, there have not been many melt downs. Joyce thinks they were prompted by sensory issues that Mindy has now outgrown. Nonetheless, they keep close to Mindy’s schedule. She has to be on a really strict schedule. . .we have a routine. We usually eat dinner when she gets home just because she’s starving and I’d rather have a meal rather than junk out before dinner. Oh, she’s crabby if she doesn’t eat. But, now she can tell us she’s hungry. After dinner we don’t have a lot of time because it’s dinner time and then it’s clean up from dinner. Then it’s shower time—you know, hair time and all that. We don’t have a lot of time because she goes to bed at 7 or so.

Failure to stick to the schedule can make life difficult for all of them. Joyce says that Mindy will be crabby if too tired, and if they ever do stay out a bit past bedtime, she plans for a nap the next day. If they do get off schedule, it takes Mindy a few days to regroup. Joyce’s main emphasis is on helping Mindy become more independent, particularly by learning to ask for what she wants. She sometimes refuses to get things for her until Mindy uses her words to ask for them. I mean I’m real proud of the things she has accomplished. Her speech has improved tremendously, like it used to be that if she wanted something, she’d just go knock on the pantry door. So eventually I quit responding to that. “What do you want?” She’d knock. “What do you want?” She’d knock. Then she’d say something, unintelligible. And, now it’s progressed to the point that she can actually tell you what she wants. That’s one thing.

I Tend to Her all Day Long. All Night Long Providing constant supervision can be particularly challenging when tantrums are frequent. Indeed, coping with all of the symptoms and with the tantrums leaves Karen, who is a trained medical professional, exhausted at times. Karen is a 40 yearold, white, married mother of three and grandmother of two, who attended some college. Two of Karen’s children, and both grandchildren, have disabilities and serious health conditions. Pam, age two, has intellectual disability, epilepsy, and sensory processing disorder. Pam and her mother live with Karen and her husband. Though Karen is not a legal guardian, she covers nearly all of Pam’s expenses and provides nearly around-the-clock care. Caring for Pam is complicated, even for someone with as much experience as Karen, because she has quite a few health and developmental issues. They classify her as severe ID. She’ll be two in January, she can talk a little bit, but it’s like still baby gibberish. They said her functioning was basically a nine month-old because she’s just learning to walk. She still has to go through PT and OT because she still can’t feed herself, and then she has sensory processing disorder too, so. Certain fabrics drive her crazy, you can’t touch her, only certain people can actually touch her and her not go ballistic. They say it’s different, feels from different people. Like if her grandma, other grandma, pats her, you’d think someone was abusing her the way she screams.

Though Karen is also providing extensive care to her youngest daughter, she provides around-the-clock care for Pam. The rise at 6 am for medications and breakfast, spend the entire day together, and sleep together at night. So that she could hear us during our telephone interview, Karen placed Pam in the living room with her mother. Because she rarely has a break, Karen gets tired at times.

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I tend to her all day long. All night long. I put her to sleep at night. She sleeps in my bed. Right now, the only reason why she’s not in here, right now, and she has tried to break down the door three times, but I couldn’t hear so I got her in the living room with her mom. So, this has actually been the longest I’ve been without her by my side. Every day, we watch TV together, I get her, her showers, her meds. I read to her. She has her seizures. . . I have to sit with her and right after she comes out of it, she wants me. So, I hold her and rock her and talk to her to try and keep her calm when she comes out of her seizures. She gets hurt, she wants me.

Karen and Pam are nearly inseparable. Karen does leave Pam home alone with her mother but not often. The weekend after the interview they were planning a birthday trip for Karen and Pam was coming along too. I’m going out of town on vacation this weekend for my birthday. She’s going to be right in that car on the way to Chattanooga. My whole birthday vacation is planned around her. Me and my husband and my daughter and Pam.

Karen said that Pam becomes frustrated often and she uses a variety of techniques to calm her. If it’s something she wants to tell you or she’s not getting her way, and she throws tantrums. She literally throws herself against the floor, 60, 70, 80 times a day, so it depends on what the tantrums about to how you actually have to calm her down. If it’s because she wants something and you’re not going to give it to her because she don’t need it or because she’s taking it away from her brother, she gets time-out time. Now, if she’s trying to tell you something, and you can’t figure out what she wants, she throws herself at the floor and screams at the top of her lungs and kicks. That, when she does that, it’s a lack in communication skills. I would usually pick her up and say, “Pam, that’s my baby. Calm down.” And, I have a calming brush that we can brush her with to help calm her down. And once she settles down, I’m like, “How about you come tell me what you want?”

During peaceful times, Karen and Pam also have a lot of fun dancing, reading, and hiking. She usually wants the radio on in the afternoons because she loves to dance. So, we’ll turn the music channel on and let her listen to music and do what she’s gotta do in there. . . About four o’clock she’ll go and get her books, she’ll start pulling her books out—she wants someone to read to her, so I’ll read her books whenever she brings them to me. . .She likes to hike. . .I don’t know if it’s the freedom of being able to walk around in and the fresh air or the leaves under her feet. But, that is her best days because she’ll stay right with you and hold your hand and she’ll walk, just walking the trail. . . I try to take her during the summer time at least three times a month, sometimes more than that, on the trail that my neighbor made for her.

Karen devotes an extraordinary amount of time to obtaining and maintaining state benefits. Karen’s background as a nurse is helpful but she says she is often more educated than the people at the welfare offices who make the decisions. She says her daughter’s and granddaughter’s eligibility and benefits waiver often. The state will declare them ineligible for disability benefits but then two months later declare them eligible and pay them back benefits. Or the state will declare them ineligible and force them to give back benefits only to declare them eligible three months later. Or, the doctor will prescribe a medication that the state Medicaid office will then refuse to cover. The constant uncertainty and disruptions in the flow of cash, medications, and health insurance coverage adds to her stress; filing appeals and advocating for coverage adds tremendously to her workload.

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I Try and Stop Him from Hitting Himself Providing constant supervision can be particularly challenging when grandchildren are prone to violence, directed either at themselves or their grandparents. Irene is a 73 year-old white, widowed, retired mother of six and grandmother of about 15, who completed high school. Her daughter, who has a brain injury due to a car accident, has a four year-old son Liam with ADHD and autism. They both live with Irene. Irene is not Liam’s legal guardian but she is the defacto guardian. She provides nearly all of his care. She cares for Liam all day while his mother works and then takes care of him at night because he does not sleep much. She estimates that she cares for him 20 hours a day. In addition to providing daily care, she works on his skill development. I give him a bath, feed him his meals, change his clothes, basically everything. He knows all his ABCs, he knows all his colors, all his shapes. So, I work with him on that too. We get him up. We brush his teeth, feed him breakfast, change his clothes. Then he plays, but he wants to stay up all night and then sleep all day. And, his favorite thing to play with is the cell phone. He’ll play for hours if you let him. And, now he’s isn’t wanting to go outside, but that’s my fault because there’s bugs out there and I don’t want them getting on me, and he’s heard me and now he’s got it.

When he becomes frustrated, Liam is often violent toward Irene and toward himself. She works hard to calm and redirect him to end the spells as quickly as possible. He gets mad, and he hits himself. He hits me. Not much you can do, I try and stop him from hitting himself. He doesn’t listen to me. He hits himself pretty hard. He hasn’t really bruised himself but its red. I just try to love him and hold on to him. I talk to him, and tell him it’s going to be alright. He does it a lot! When he gets mad. He has to have the cell phone or he has to come out here in the living room. Anything you tell him no about. He doesn’t believe in that word no.

Irene says it is difficult to take Liam on outings that require him to sit still or get along with others. We take him to the carnival, and he wouldn’t ride the rides. He tried to take everybody’s toys they won at the fair. And, he doesn’t do well. He doesn’t do well in restaurants because he wants to get up and run. . . He won’t sit still, and he loves people, or he spills stuff. He’ll play with them or talk to them when they’re trying to eat. It’s terrible. . . Sometimes he will try and hit me at 73.

She has tried taking him to a psychologist and he is now on one medication but she said it was not working well. She was planning to take him to another right after the interview but was concerned that it would be hard to develop a plan with Liam in the room. Any of the days he gets up and after you say no, that starts the war and you just can’t hardly talk him down. . .It’s probably not going to go very good because last time he screamed so loud that we had to make an appointment just to go in and talk to her without him. He’s so loud you can’t even think.

She appreciates the good days, which are few and far between, enjoying some respite as he entertains himself.

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Somedays he has good days, and he’s better, and he’s a very good boy. On good days he just wants to sit and play phone. He plays all kinds of games. He can do stuff on the cell phone that I don’t know how to do. He’s smart.

It’s Much More Childcare Than We Expected Similarly, while Chris and her husband deal with a wide variety of challenges when caring for their grandchildren with disabilities, containing violent outbursts requires the most constant supervision. Chris is a 67 year-old white married mother of two and grandmother of two, who has a BS. She lives two minutes from her grandchildren, Wendy who is ten and diagnosed with anxiety disorder and has autism like symptoms, and Mark who is seven and diagnosed with ADHD and Oppositional Defiant Disorder (ODD). She and her husband watch the grandchildren almost every afternoon after school, often on weekends, and in the summer all day. They have a complicated schedule on the refrigerator but it is constantly subject to change. They have Wednesdays off, but often her daughter and the children come for a visit on Wednesday afternoons anyway. Thursdays she prepares a meal for the entire family and they stay until 8 pm. Chris says they devote a lot of afterschool time to homework. In general, the grandchildren do well in school. Wendy, who Chris describes as “very odd, quirky, absolutely wonderful, socially awkward,” struggles with math. So does Chris. We do homework. The math stuff, I don’t get it. The number bonding stuff, I don’t get it. I can help with English, writing, but for math. My daughter has had to look it up on line and come over and teach me at times. For Wendy, math is very hard, she does not get it. Mark is more able.

Though he does not have therapies, Mark takes several medications and Chris has to set the timer to help her remember to give them on time. She permits the grandchildren an hour on their electronic devices each day and links the medications to that activity. I have to give him his meds at 3:00 and at 5:00, and my husband needs his at 4:00. So I set the timer to start the devices at 4:00 and end at 5:00, and those are also when they need meds. My memory is not fantastic anymore, this helps.

Outings have not gone well because Mark can become violent, so they tend to stay close to home. They mostly play in the back yard. I make sure they don’t go to the front yard without me with them. Mark has trouble with neighbor kids. Mark is mean, he will hurt them, he threatens them. So, we have to really keep an eye on him. He scares them, he will take a stick after them. Once he put thumb pins between his fingers and was threatening with his fist with sharp points sticking out. Serious things. They are hard. Fortunately, the family that he scares the kids, they are nice. They play, but I have to be there because he can do that in an instant. It will be fun, and then suddenly it’s violent. He has pushed, or hit, or threatened someone.

As both she and Mark grow older, she finds handling his outbursts more difficult. She is not able to run fast enough to catch him and he can overpower her, and increasingly her husband as well. Her husband has a traumatic brain injury and is on the heart transplant list, thus his strength is compromised. It now takes both Chris

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and her husband to stop violent outbursts; neither is strong enough to do it on their own. It’s really hard. It makes me really anxious. I’m on high alert if he is outside. So afraid he will hurt someone. If I let him out of my sight, to run in and stir the food, it can happen in that instant. I try to get my husband to watch, but he can’t run after him. I can’t any more either. Mark is very fast, hard to catch if he runs away. They stay in the back yard unless I’m with them. We have had to, together, carry him in the house. He is tall, stocky, getting big. It does not happen often but often enough that it makes you wary.

She can never let her guard down; her husband watches them inside the house while she prepares dinner and even then they get into trouble. But even in the house they get into things. They melted crayons over a hot lightbulb once. Wax dripping everywhere. They have done some pretty naughty things.

Mark is prone to violent outbursts and has often bitten and hit all of them, particularly his sister and his mother. Because the outbursts can occur at any time, Chris and her husband must always be watchful. The hardest days are when he does not listen, tries to bite and hit us. We are not physically able to handle that anymore. If he gets violent, it takes both of us to handle that, so we are both always here. Mark has improved a lot, and with maturity I think he will get a little better. It took a long time to find this medication but it is working well. I don’t think he will get fixed. But his violent outbursts are less than they used to be. I worry about him. We worry he will hit a cop; we are afraid his impulses are going to get him into big trouble with the law.

Chris says they always expected to move closer to the grandchildren when they retired, but they never expected to provide this much grandchild care. I was a bit surprised, once we moved here, that we have the kids so much. I thought we would have Wendy after school but we thought Mark would be in a program after school. We moved in and went right to get the kids from school. We didn’t know where anything was. I thought Mark would be in a structured afterschool program, we thought he needed that, that it would be best for him. But he is not. I thought we would just have Wendy, she is much easier to watch. But we have them both. It’s much more childcare than we expected.

Intensive Medical Care What makes grandparent care so intensive for some is that when they are caring for their grandchildren with disabilities they must provide intensive medical care. Some grandchildren need extensive therapies, wheel chairs, braces, oxygen tubes, feeding tubes, and many other types of complex medical equipment and treatments. Often with very little training, grandparents provide such intensive medical care. Like all other grandparents, they must also provide routine care for themselves and for their grandchildren. However much care work they are performing, grandparents still need to shower, buy groceries, pay bills, visit their doctors, and exercise. And they still need to help their grandchildren with meals, getting dressed, catching the bus

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and other daily activities. But in addition to all of those duties, they must manage complex, and at times risky, medical equipment and treatments. That Will Be on My Headstone: You Do What You Gotta Do For some grandparents extremely intense care work arises occasionally. That was the case for Rae when her grandson needed several surgeries. At 61, Rae is recently unemployed. She provides a lot of care for all of her grandchildren, and particularly for her three year-old grandson Paul, who has Down syndrome and immune deficiency. Paul is three, does not eat regular food, does not walk or talk, he sits and he crawls, eats from a bottle, has aspiration problems, has had four surgeries, two open heart surgeries, goes to many therapies, has lots of doctors.

Rae takes care of Paul one to three times a week, and always for a full day on Tuesdays. I go over every Tuesday and I have done that since he was a little baby. I get there 8 am and we spend the day together till five. Yesterday was our day. I fed him. We do all sorts of activity all day long. We did puzzles, built blocks. We do a lot of sensory stuff, brushing, oral mouth exercises with a tool that vibrates. We work on the inside of his mouth because he has sensory issues. A lot of block work. Building. Puzzles. Colors. We read books.

Cognitive work is a high priority for Rae, but so is ambulatory work. She uses an array of techniques to strengthen his motor skills. We work on some walking. He has a parallel bar system that my husband and son-in-law made for him to walk between to give his strength for walking. Usually we do bike riding, and his indoor swing. We practiced eating regular food with Cheetos. Trying to get him used to putting things other than thickened formula in his mouth. And he napped.

Though she never takes Paul to therapy on her own, she sometimes accompanies her daughter to therapy. In addition, Rae’s friend helps her develop additional therapies at home. I have gone with Paul to therapy but not taken him by myself. Every Tuesday my friend comes over, she is a retired therapist, and she helps me and teaches me things to do. To play with beans, or with rice; sensory things we work with. She helps me come up with new ideas, pipe cleaners, straws, bottles.

She often cares for all four grandchildren and occasionally invites Paul’s siblings to spend the night at her house. Because Paul requires extensive medical equipment, any sleepovers with him occur at his own house. I have the older two overnight but not Paul, not yet. Partially because of his medical needs. He gets hooked up to a monitor every night. He used to have oxygen every night. To bring all that to my house would be a lot. I have stayed there overnight with him, mostly I will spend the night if they need to leave with him for a really early medical thing.

Rae does not take Paul on outings, however, because his immune deficiency prohibits him from going anywhere except to his doctor and therapy appointments. Paul has had many surgeries and by far the most difficult time Rae had helping with Paul was when they flew in a medivac plane and stayed for a month, in different rooms every night.

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I put my job on hold. I put my life on hold. . . And the other kids, my son and daughter-inlaw and my husband all helped to take care of the other two kids. . . This was tumultuous for all of us. I was on a cruise. . .and I had to fly home quickly and get there in time for the surgery. . .We stayed in some hospital rooms, and we stayed in nearby hotels, we stayed in houses like Ronald McDonald houses, but not as nice. Every night was different depending on the situation. That added to the stress a lot to change nightly. There were nights when I did not know where we were sleeping till five at night. I just travelled with my suitcase and then just waited to see where we were staying. One of us slept in his hospital room every night the whole time. My daughter did not want him left alone. We were there.

During his first three years, Paul’s surgeries have included two open heart surgeries, tonsils removal, and a hernia repair. The entire family tries to spend Thanksgiving and Christmas together, though often their efforts are complicated my additional surgeries. For that reason, she says they take one day at a time. It’s not easy for the parents or the family or the grandparents but you do what you gotta do. You do what you gotta do. That will be on my headstone: You do what you gotta do. Somebody needs your help, you just do it. You do it. You dig in and do it. It’s important.

I Basically Live My Life Around Him and What He Needs Providing extremely intensive care can be particularly challenging when grandchildren need help with virtually all activities of daily living, respite care workers fail to arrive on schedule, and both grandma and grandpa have serious health issues. Arlene is a 53 year-old white married mother of two and grandmother of nine, who completed high school. Her daughter and two children live with Arlene and her husband. Carl, age eight, has cerebral palsy. Arlene quit her job to care for him, at least 28 hours a week, while the others are at work. Carl is not very mobile and needs assistance with all tasks of daily living. Arlene performs that care in addition to performing a significant portion of the housekeeping. I help him, carry him to the bathroom, give him baths, cook for him, and feed him and do some stretches, take him to therapy if need be and take him to the doctor if need be. Pretty much whatever he needs if I have to if nobody else is here to do it. I basically live my life around him and what he needs. I would say probably, 28 hours a week. It’s spread out over every day. You know, it’s usually mornings and evenings. He does go to school from 7:30 in the morning until 2:30 or 3. And then the weekends, of course. Meals and laundry. I do all the cooking, cleaning, all the household things.

Arlene spends a great deal of time providing personal care to Carl and she appreciates his sense of humor. She also appreciates the fact that the school bus is able to pick him up in his electric wheelchair. He’s a typical boy. He doesn’t want to always do things or do things your way. He’s a very, he’s got a lot of humor in him though. So, he’s very humorous. You get him ready for school. He spends a lot of time on the toilet so you have to get him up in time to go potty and get him ready. We live in a split level so we have to carry him down steps to get into his wheelchair, and then the bus does pick him up for school, so that’s nice. That’s the only time he gets to use his electric wheelchair is at school because they pick him up and they will drop him off, you know. If we have to take him to a doctor’s appointment or something, we use a

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manual wheelchair. As a matter of fact, we are actually looking at a conversion van—taking a look at that tomorrow.

Her favorite days are when they stay home and Carl can just move around on the floor and stretch out. The best days are when we don’t have so much going on and we can just be at home and play games and not have to work so hard at everything, you know. He can lay on the floor and move around a little bit on his own, himself a bit without but a bit of help. You know, to get stretched out and not always have to be in a chair or a bed.

Her most difficult days were when he is not feeling well and he risks becoming dehydrated. They are trying to avoid a G-Tube, though she can see that it might be a better method for feeding, hydrating and medicating. When he’s not feeling really well. it’s always a challenge to get food into him or liquids, and he gets dehydrated very easily. So, when he gets sick we go into the doctors and sometimes the hospital to get an IV because he’s always dehydrated. So, we’ve talked about having a g-tube put in, but we don’t want to do it unless we absolutely have to because that’s just another thing, you know? A G-Tube can be used to feed the child which he doesn’t need because he can eat on his own. But, this would be to more or less to distribute liquids into him so he doesn’t get dehydrated. Also, his medicine could be given through that. He takes a lot of oral medication which is kind of a tough thing because it’s gotten to be so much and it’s not the best tasting. So that would be nice to be able to put it through the G-tube so he doesn’t have to suffer the icky taste and stuff. He’s got a really bad gag reflex too.

Arlene is supposed to get some time off thanks to a respite care plan but she said they frequently do not come as planned and it ends up becoming very stressful. We have these respite people that are supposed to be here to help, but then they won’t show up, or they’ll call in sick, or they’ll be late, and it’s just stressful, you know? Because you don’t know until the last minute. It’d almost be easier to do it yourself, but you can’t do it all yourself because it’s physically and mentally draining, you know. Well, it ends up into like exhaustion almost. You end up with headaches and just a lot of exhaustion. Well, I don’t handle stress that well so it’s pretty much a daily thing for me.

Recently when Carl was in the hospital Arlene stayed with him almost aroundthe-clock. She became very tired. Well, like, last night there was a school dance and I didn’t take him because I was exhausted. The thing, right now, about two months ago I was in the hospital with him for five days straight. I mean, somebody would come and let me go home and shower and stuff, but I’d stay with him the whole day and through the night.

As she looks to the future Arlene is increasingly worried that she will not provide as much care as Carl needs. Her own health is deteriorating, in part due to a thyroid condition. Her husband recently suffered a nasty fall and has many broken bones. Moreover, Carl is growing heavier and is therefore more difficult to lift. I used to when he was littler, but I just really can’t do it anymore because he can’t fit into a cart. He’s too big to fit into a cart, but too small to fit into one of the handicap carts. They came out with these handicap carts, but he needs more support for lateral seating, so unless I can take his wheelchair, I don’t ever take him anywhere. And, I can’t ever take his motorized wheelchair because we don’t have a vehicle. Sometimes I’ll load his manual wheelchair to

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take him to his appointments and stuff, but yeah, I really kind of avoid taking him anywhere because it’s too difficult.

If We Don’t Have Any Issues with Her Not Tolerating Feeds and Napping and Not Crying All Day Long, That’s Pretty Much a Good Day for Us at This Point Providing constant supervision and care can be particularly stressful when there are multiple diagnoses, multiple symptoms to address, and an unhappy grandchild shedding lots of tears. Jill, age 48, lives just 15 minutes from her three month-old granddaughter, Minnie, who has Down syndrome, a heart defect, and an intestinal disorder. Jill works full-time from home and also cares for Minnie around-the-clock several days a week. Minnie has already undergone several surgeries and several more on the docket. Jill had moved to a beautiful island home accessible only by boat, but she and her sons moved back after Minnie was born. When Jill is caring for Minnie, the work is constant, day and night Usually, I pick her up around noon, one o’clock, she comes back here, she tends to have a little bit of a hard time in the afternoon as far as vomiting and things like that go. So, for the most part, from one to about three o’clock we just kind of sit here. I hold her and try to keep her from getting sick. She naps. She sleeps an awful lot because of her heart at this point, but because I can’t put her down, pretty much for the rest of the evening, I have her strapped to me. She has a feeding tube, so I have a bag I have to carry around with me, with her. She’s on a continuous feeding. So, I pretty much do that. That’s kind of my day with her. You know, diaper changes, bathing before bed, medications three times a day. She usually goes to bed eight or nine o’clock with the monkey, she kind of sleeps through most of the night, and then it’s kind of rinse and repeat for the next day. Start the next morning with medications, you know, rinsing her off, getting her cleaned up, getting her dressed.

Taking Minnie in the car is particularly difficulty; mercifully most of the therapists come to her. Minimizing time in the car is a top priority. On the days that the occupational and physical therapists don’t come, then it’s kind of mellow. But, when they do, they work with her for a couple hours. We also have home health in three times a week. They come in and they weigh her, check her NG Tube and things like that.

The main goal right now it to reduce her vomiting. It is seriously affecting her growth and development and they are employing a variety of strategies to reduce it. As long as she is eating—our goal is to keep her from vomiting more than two times a day. So, if we can keep her down that low, that’s usually a good day. If we don’t have any issues with her not tolerating feeds and napping and not crying all day long, that’s pretty much a good day for us at this point.

Some days are harder than others. Jill says in any given week there are usually two good days and nights for every bad day and night. Yesterday was especially challenging and Jill was weary from the effort. There is no question that Medicaid coverage of skilled home nursing care would provide Jill with much-needed respite. Yesterday she vomited every feed. She vomited in the middle of a feed which, of course, is a risk for aspiration. So, we have to keep her upright. We have to clean her airway. Let’s see, she pulled her tube. We had to replace her tube. What else did we do yesterday? She pretty much cried all day long. Every hour or so, she would start again for another half hour. It was

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a pretty rough day, yesterday. . . not exactly sure why. I think she’s nauseous is what I think—that’s just my opinion, but I think she just generally, stomach wise, she just does not deal well. And, whether that’s tied into her heart, I don’t know, it makes her very sleepy which makes it hard for her to stay awake.

Because she has had, and will continue to have, so many surgeries, they have to reduce her contact with other people. They take Minnie to the doctors, and occasionally to a park, but otherwise they keep her fairly isolated. We’ve got her pretty isolated before surgeries so she’s not really able to go to too many other places. You know, we’ve taken her to the park every once in a while, just to get outside if it’s nice, but for the most part it’s doctors, you know? . . .She has to be on us so that nobody can get close to her face. Anybody who comes near her has to use precautions as far as hand sanitizer, that kind of stuff. Nobody that’s sick. I usually try to avoid people while we’re there. Usually I end up meeting my other grandbabies over there, so it’s usually just kind of chasing them around for the most part, but I usually have her in the carrier on my chest and I wrap her with my coat, and that’s pretty much it.

When It’s Been a Long Day of Crying, It Usually Makes Me Want to Cry Connie also faces a lot of tears on any given day with her grandson. Connie, age 57, cares for Andy, who is two and one-half and diagnosed with cerebral palsy. Andy and his mother live with Connie and she cares for him about ten hours a day Monday through Friday and then also sits for him occasionally on evenings and weekends. He is not able to crawl or walk, or talk, or feed himself. When she is caring for him, she feeds, dresses, plays, reads, and takes him to all of his doctor and therapy appointments. I make his bottles and feed him. Change his diapers, clothe him. If he has doctor’s appointments, I take him to the doctors. I change him his feeding bags and stuff like that and put the formula in and run that so that he’s getting his feedings on time or when he needs them. That’s a lot of the care. He has physical therapy and occupational therapy and they come in once a week, so I’m here for that just to make sure he’s getting good services that he’s due—it’s limited. The usual the things.

She works hard to keep him moving and stimulated in an effort to prompt his development. Usually we play, work him with his arms and his legs, trying to get stronger. Trying to get him to try to grasp stuff. . .He still is doing his feeding between those, because he eats every three hours, and just kind of reading to him, and just keep him entertained and moving. As far as I mean just keeping him loose because about his muscle tone being so tight that he doesn’t, it’s really hard to keep. . . He has a lot of doctors that he goes to and sees on a regular basis. It is what it is, and you got to try and kind of deal with it and work with what you got, and we try to help him as much as I can.

Andy has a lot of pain and Connie tries to keep him laughing, to minimize his discomfort. Distraction is often an important tool in care work. I can get him to laugh at anything. He probably thinks I’m kind of weird. Just, if he’s not in pain, and he doesn’t have muscle spasms or he doesn’t have what we might think are little seizures, then that’s a good day to me.

Because he is not mobile Andy travels in a special wheelchair; additionally, his care requires several heavy pieces of medical equipment. To leave the apartment,

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Andy and the equipment must all be carried down flights of steps. Connie is not strong enough to do it all. Though federal law requires public spaces to be made accessible, the owners of their apartment building have refused to put in ramps because the building is private. Connie and Andy are typically housebound unless Andy’s mom is also there to help get him out of, and back into, the building. We don’t go out as much because we live in an apartment building and we have stairs. . . there’s no ramps and that apartment complex doesn’t want to put in ramps. We are pretty much stuck in the house so we go out on our deck and get some sun and air and stuff like that. Pretty much stay in all day. During the weekends when his mama’s here, we go out. She carries him outside, and we’ll either go to this grocery store or we’ll go out to the mall or just, we’ve gone out to dinner with him. But, it’s, his equipment is really heavy, and I have to be the one to carry his equipment down the steps to her car, and she carries him. And, I just can’t do that by myself. The heavy equipment, when he does go to the doctors, I don’t even carry it, I just carry him down the stairs and out the door. They’re very heavy and I just can’t do it by myself. It’s very bulky.

So, in addition to all of her other duties, Connie also expends a great deal of time and energy advocating for a much-needed ramp. Recently, she has devoted subsantial time negotiating with the apartment managers for the ramp, but so far has been unsuccessful. I’ve looked, and we want to get out of this apartment because it’s been fighting tooth and nail with them to trying to approve ramps, and they go, “Oh, no, we’re not going to pay for that. You have to.” And they give you stipulations, on, “you’ve gotta have three estimates, and we’ve gotta approve it and blah blah blah blah blah”. And I go, “Why am I going to pay for ramps for you to use later if we ever move?” To say, “Here’s a handicap accessible apartment?” NO! No. Noooo. No, I’m not doing that. Sorry. That’s why we haven’t had them.

Even securing a handicap parking spot involved a lot of administrative red tape, though in the end it was mostly unnecessary. But, we finally did get a handicap parking spot. They told us that they needed a letter from a doctor, and a letter from the DMV. And, then when I did all that, he said I don’t need that, I just need you fill out this paperwork. And, just asked me why I needed a handicap parking spot. So I was kind of not a happy camper, and wrote something about it that they didn’t probably like anyway.

By far the most challenging days are when Andy is crying from hunger or pain. Despite all of her attempts to placate him, on bad days she is unable to relieve his discomfort. If he is crying and I can’t figure out what’s the problem. . . He just can’t, all he does is cry and scream. And, now with all the formula now that he’s getting in his belly, through his G-Tube, he’s gassy, he’s constipated. It’s just the screaming, days like that, those kinds of days like that are very frustrating for me, and I can’t wait for mama to get home. And, I kind of hand him over and say, “You take him, because I’m done!”

Connie says that about one day a week he is sufficiently fussy that she wants to pull her hair out. As much as possible she keeps him up in his stander and tries to tantalize him with toys, especially balls. When her daughter is available to help, they take Andy with them. He likes to ride in the car, and he enjoys the grocery store

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though he is unable to sit up in the basket and Connie needs to lean over and hold him the entire time. She says that given his medical problems, he is surprising laid back. Only when he is having a day of crying does she feel like she might as well. Usually he’s a very happy baby. He doesn’t cry a whole lot unless it’s something hurting him or if he’s extremely hungry, but he’s a laid back kind of kid. . .I don’t feel that way too often, but when it’s been a long day of crying, it usually makes me want to cry.

Connie rarely has a day off and in fact does not take a day off even if she is not feeling well. She says her daughter already has to take days off from her job for Andy’s surgeries and certain medical appointments, Connie does not want to contribute to more missed work It’s never, I’m not feeling good, I’m not watching him! That’s never happened. Even if I’ve not felt well, I’ll watch him just because I know it’s hard for her. . .

I Will Do Different Therapies with Him Some grandparents provide highly technical medical care. In Doris’s case, providing this care becomes more difficult as her grandson’s condition, and her own health, worsens. Doris, age 55, cares for her grandson John, who lives just a few minutes away. John, age 11, has numerous disabilities including atrophy of the brain, LennoxGastaut seizures, and visual and hearing impairments. John is not able to speak or sit up or roll over; thus his care must be constant. Doris, who has MS, routinely cares for him and assists with his feeding tube, ventilator, tracheotomy, and catheter. Doctors have predicted John’s death for years and he continues to outlive their estimates. Because of the seriousness of his condition, they try to keep two caregivers with him at all times, either one of his parents, a paid nurse, or Doris. She watches him alone for up to about 45 minutes and often meets him at his doctor appointments. She provides a great deal of highly trained medical assistance to John. John has a paid nurse six days a week and Doris often helps any days the nurse has off. I will help on nurse’s days off. I will help with his morning routine which involves his bath, brushing his hair, changing his bed, changing his trach if need be. The trach gets changed every so often every day. His, trach collar, his, you know the collar, that holds the trach, the tubes, they get cleaned. He is cathed. He has a cath because he also has a kidney disease. He gets cathed every four hours. So, I will also, I cath him in the morning, and all that needs to be charted. He, gets suctioned multiple times a day! I will do that, I do that a lot. I don’t know. . .I will do different therapies with him. Range of motion is one of them. You just kind of do range of motions with all of his different arms, legs and head, neck. Play with different light up toys. Push button toys. Just different therapies. Occupational and, physical therapies. So, every one that I do with John is all medical.

Doris used to keep John for several days and nights in a row, but as he has grown older his health has deteriorated and she is no longer able to care for him overnight. She used to feed him his favorite, bananas, and now she prepares food for his feeding tube. She used to take him to all of his doctor appointments and now he has grown too large for her to move him. Now, a van takes him in his wheelchair and she meets him at the doctor. But, now John is getting so big that he’s hard to transport, lift him in and out of his wheelchair into the car and buckle him in, and then you have to take him out of the car

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and put him back into his wheelchair. He’s 85 pounds. So, it’s getting very difficult to do that. And, he’s just about as tall as I am. . .Now, he is taken to all of his doctor’s appointment by a transportation company that he doesn’t even have to get out of his wheelchair. So, it’s a handicap accessible van that takes him and brings him home from all of his appointments. But, I still go to his appointments. I just meet them there.

When John was younger and in much better health, they used to while away their days together reading books, going for walks, refilling the bird feeders, and visiting her parents and the neighbors. Even now she says she will try different activities such as going to the park, feeding the ducks, or going to a movie. Sometimes these activities work out well and other times they do not, but she likes to try. Still, as his health has deteriorated, these activities become more difficult. In fact, she has spent a lot more time watching for, and treating him for, seizures. When he had seizures all day. That’s a very challenging day. Oh, my gosh, It was heartbreaking. I was helpless. . . Just the fear because he would have 300 seizures a day sometimes. And, it would be one after the other after another after another, and there’s nothing, there’s absolutely, nothing you can do to stop them. You would give him emergency meds, I mean he had emergency meds that he could take to get rid of them, to stop them. Sometimes those wouldn’t stop. It got to the point, that there is always protocol where, if he has this many within this amount of time, and they last this long, that’s when you need to call 911 and they need to come and get him. You need to go to the hospital. So, you always have to be on guard with that.

Both Doris and John have deteriorating health, thus providing medically intensive case is growing increasingly difficult. But Doris is committed to continuing his care. I’ll Do the Feeding, Do His Tube Feeding, and Help Him Breathe, and Get Ready for Bed Similarly, Dawn provides a great deal of specialized medical care for her grandson. Dawn, age 70, cares for her oldest grandchild, Rob, who has cerebral palsy. Dawn lives out of state but spends about six months out of the year at her daughter’s house to help with Rob and his sister. I usually go out when school is ending and probably four weeks to a month or to six weeks there with them. Then I go out again at the end of August and I stay.

In fact, when Rob was little, Dawn moved closer to her daughter so that she would be able to provide more assistance. From the time he was very little I would stay in an apartment near theirs. They lived in a little tiny apartment. . . I’d rent a place somewhere and I would go over early in the morning and I would prepare his medications for the day and then I would get him up and take care of doing his feeding and getting him dressed and stuff.

As Rob is getting older, Dawn still continues to provide hands-on care including assisting with medicating, feeding, and breathing. Now that he’s gotten older they have a nurse there at night and the nurse at night prepares the medications for the whole week. He makes up little packets for us so then it’s just a matter of giving them to him and he does the morning, he gets him dressed in the morning and takes care of that, so I don’t have much to do with that other than when he gets home after school.

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If I’m there I’ll do the feeding, do his tube feeding, and help him breathe, and get ready for bed and that sort of stuff.

They Kept Telling Me I Was Too Optimistic Some grandparents feel that their grandchildren are capable of a lot more than medical professionals predict. They may provide care that is more intense than other family members, or medical professionals, advise. Joy was fiercely determined that her great grandson would beat medical expectations and devoted every waking minute to maximizing his development. Joy is a 60 year-old, twice divorced, retired white woman with two children, six grandchildren, and one great grandson Zak, who has a BS. At one year, Zak stopped breathing and now has cerebral palsy and cortical vision impairment (CVI). The courts faulted his parents and placed Zak in the custody of Joy for ten months. When we did the interview, Zak had just been placed in foster home due to failure to thrive under Joy’s care. During the ten months she was his legal custodian, Joy provided extremely intensive, medically sophisticated, care for Zak around-the-clock. When they placed Zak in her custody, the doctors told Joy that Zak was, and would always be, a “catatonic vegetable.” She disagreed and pursued a wide range of therapies aggressively. As a caregiver you are with him 24/7 and you know him better than anyone else and so at the therapist and doctor, your observations should have value and carry weight. They kept telling me I was too optimistic. That what I was observing was not what he was doing. I wasn’t too optimistic. I really had to advocate to say, I know, I know he wants to talk and walk. I know. I had to keep advocating. But they thought he was a catatonic vegetable.

Joy describes a typical day during the ten months she had custody. She describes a rigorous schedule filled with therapies that many of the doctors felt would not, could not, benefit Zak. He would wake at 5:30 and I would give him a G tube feeding, we would be awake for an hour and I would do range of motion and talk with him, get him warmed up for the day, flexibility. About 7:30 I would try to orally feed him and then we would get ready for his appointments. We would drive about 20-30 minutes away, I would transport and he would nap. We would do one hour of whatever therapy it was that day. Somedays he had two therapies back to back. Medicaid paid for these therapies. The state determined that they were going to carry the insurance on him. During down time we would do some singing, playing, range of motion. He also has CVI, cortical vision impairment, we would work on him tracking images. Then he would orally eat lunch. Then we would come home and do another hour of physical therapy with him rolling, siting, standing, bi-motor skills, reading, singing, and then it was time for another feeding.

Feedings occupied a great deal of their time and energies; she was trying to keep his weight up while transitioning him from tubal to oral feedings. I tried to feed him three meals and two snacks a day. We would work on holding the spoon and eating different textures. Then we would go to his mom and his grandma’s house, when they got off work, and he would play with them, have another oral feeding, he would interact with them, take walks, work on rolling, gross motors, weight bearing, transfer position. About 8:30 we would come back to my house and he would nap for those 30 minutes in the car. And then all the time I’m doing dressing diapers, bathing. We would come home and sing and read and work on a list of words that we got from a speech therapist, and then he

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would have another feeding and at 10:30 we would go to bed. He slept well through the night.

Zak is not able to crawl or walk, so Joy used an adaptive stroller to take him on outings, and most often things went well. I took him everywhere. I took him to grocery shop, to the zoo, church. Anyplace I went, he went. We were out and about. We did not just sit home. He was a production. To move him from point A to point B was a production but if organized the production was not so bad. He had an adaptive stroller, very heavy, and it did not just collapse. And I would have to take his G tube supplies as well. And oral food. And diapers. And extra clothes.

During the ten months she was Zak’s custodian, Joy spent a lot of time trying to reduce the number of medications he was on and increase his mobility and mouth feeding. She was often at odds with health care providers who thought her goals were unrealistic. She was particularly focused on reducing the sedatives and other medications they were giving Zak but it was an up-hill battle. My impression is that in New Mexico for special needs kids, medications are of the sedative nature. And if you feel that you can’t control impact or get the child to cooperate, it is really easy to medicate and sedate them. The medical field here relies on the sedative nature of meds, for special needs kids, especially in hospitals, for example, because they don’t have enough staff. They are pulled thin and a child sedated is easier to care for than one who has potential to be a terrible two. So the backlash and push back if you say you want to wean them off of sedative meds is a brutal fight. Zak was on a drug to reduce nerve pain, I read about it and it was a horrendous drug and I weaned him off of it, having consulted with professionals. And there were no side-effects. But the pushback I got form the doctors was horrendous.

Medical providers were not the only ones who disapproved when Joy tried to reduce some of Zak’s medications. Child Protective Services (CPS) also demanded that she keep him on the medications in case they would need to transfer him to a foster family. Also from the child abuse people. They said, if you are not able to keep him, how will another foster family handle him if he is off these drugs. He needs to stay on these drugs. He was on six drugs when I got him, and the more I read the more sedative I found that they were. I tried to wean. It is a control issue, they don’t have enough manpower. If we sedate them, special needs kids are easy.

Extremely Intensive Grandparenting Just as disabilities vary enormously, caring for grandchildren with disabilities varies enormously. When grandchildren require constant supervision or complex medical equipment and therapies, care work is particularly intense. Grandparent care may include a wide range of daily personal care such as assisting with feeding, bathing, toileting, dressing, and medicating. It may include a variety of social supports as well including help with schoolwork, friendships, anger management, transportation, hobbies, sports, lessons, and holidays. It may also include providing help with

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oxygen tubes, feeding tubes, wheelchairs, and Medicaid coverage. All of this care can become even more difficult when grandchildren are in pain, vomiting, having seizures, shedding tears, throwing tantrums, or acting out violently. Grandparents often take children to school, doctors, therapists, movies, hotels, even cruises. Some are legal guardians and custodians, or cohabitate, and their care is often around-the clock. Some have serious medical conditions of their own and yet are also caring either for spouses, frail older relatives, or adult children with disabilities. Their care work becomes even more intense when federal laws are not enforced, thus they cannot obtain a ramp to their apartments, or when poverty-based programs like Medicaid disrupt coverage for no apparent reason. Fighting endless red tape and advocating against faceless bureaucracies usurps much-needed energies. Sad and worn out grandchildren often lead to sad and worn out grandparents. Many grandparents are doing much more than they ever imagined, and some are doing more than their physical or mental health permits. Though they rarely see an end in sight, some wonder how much longer they can continue to provide extremely intensive care. As cumulative inequality theory suggests, those with sufficient income, education, and expertise may have more options for assuring care while protecting their own wellbeing. Those with less income, education, and expertise are most likely to feel overwhelmed and, as we demonstrate in later chapters, to face adverse consequences for their financial, social, emotional, and physical wellbeing.

Notes 1. Nelson (2016), Elliott et al. (2015), Glenn (2012), Hogan (2012), Aumann et al. (2010), Gladstone et al. (2009), NAC and AARP (2009), Neal and Hammer (2009), Rubin and WhiteMeans (2009), Bittman et al. (2007), Heitmueller and Inglis (2007), Wang and Marcotte (2007), Wakabayashi and Donato (2006), He Waldrop and Weber (2005), Carmichael and Charles (2003), Evandrou and Glaser (2003), Evandrou et al. (2002), Stoller and Martin (2002), Ashton (1996), Wilson (1987) and Cantor and Little (1985). 2. Bureau of Labor Statistics (2018), Carrillo et al. (2017), Abdul-Malak (2016), Brandon (2016), Nelson (2016), Elliott et al. (2015), Harrington Meyer (2014), Coontz (2013), Heymann et al. (2013), Hogan (2012), Luo et al. (2012), Lerner (2010), Gladstone et al. (2009), NAC and AARP (2009), Neal and Hammer (2009), Rubin and White-Means (2009), Baker et al. (2008), He Waldrop and Weber (2005), Carmichael and Charles (2003), Evandrou and Glaser (2003), Evandrou et al. (2002), Minkler and Fuller-Thomson (2001), Hays (1996) and Cherlin and Furstenburg (1992).

Chapter 7

Taking Custody

In the US, rates of grandparents becoming de facto or legal guardians are increasing. More grandparents are facing the daunting challenges first in gaining custody of, and then in caring for, their grandchildren with disabilities. About one-third of the grandparents we interviewed are coresidential. Some are simply co-habiting with all three generations. But 18% of the total sample are legal guardians, and 6% of the total sample are de facto guardians. These rates are higher than national averages, thus our data provide the opportunity to examine the trials and tribulations of becoming legal or de facto guardians and custodians. Our sample is by no means random or nationally representative; it was drawn through a variety of convenience measures including asking acquaintances for referrals, snowballing, and placing posts on web sites. Our aim is not to lay out statistical trends but to explore in greater depth how custodial grandparents gain custody of, and then care for, grandchildren with disabilities. We found that in some families, no legal efforts are employed. Grandparents become de facto guardians when both generations agree that the parents are not parenting well and the grandparents should take control. In other families, legal efforts are needed and often highly contested. Grandparents typically become legal guardians when the state has already intervened and taken custody away from the parents, or when grandparents obtain custody to avoid foster care. Legal battles can be time-consuming and costly. They often heighten strains between the generations. Pursuing custody of their grandchildren is not something grandparents plan. It is not something they want to do. It is usually a last resort in a situation that is untenable. Many grandparents do not have sufficient financial, emotional, or physical resources to become parents yet again. Some do not know a single lawyer. But when their grandchildren with disabilities are being neglected or abused by parents who are not parenting well, they feel they have little choice. Custodial grandparents aim to give their grandchildren the safety and security they deserve. Over time, if parents are able to control addictions and other mental health issues, they may seek to regain custody of their own children. Understandably, grandparents may find relinquishing custody almost unthinkable. © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_7

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Difficulties of Taking Custody Several studies show growing numbers of grandparents serving as custodial grandparents, often at great personal costs.1 The proportion of grandchildren living in intergenerational households has risen steadily for decades and of those intergenerational households, about 60% are headed by grandparents.2 In 2012, about seven million grandparents reported that grandchildren were living with them and close to three million reported that they were responsible for the basic needs of one or more grandchildren. In all, the share of US children living in a grandparent’s house has more than doubled in four decades, rising from 3% in 1970 to 7% in 2010.3 Custodial grandparenting is not randomly distributed. Custodial grandparents are more likely to be Black and Hispanic and living near the poverty level.4 Hispanic grandparents are more likely to live in and provide grandchild care in multigenerational households and to stay in those households longer than whites and African Americans.5 In part due to higher rates of poverty, joblessness, drug use, and incarceration, African Americans are significantly more likely to have custodial care of their grandchildren.6 Of custodial grandparents in 2018, 63% are women, 26% have a disabilities, 56% are in the labor force and 19% are poor.7 Indeed studies show that custodial grandparents are more likely to have lower incomes and live in poorer housing in poorer neighborhoods.8 Custodial grandparenting generally occurs when the parents are unable or unwilling to provide needed care.9 Those who became grandparents at younger ages, because they and their children became parents at younger ages, tend be lower income and less educated and more likely to become guardians.10 Adult children may be mentally or physically ill, in prison, insufficient breadwinners, substance abusers, or otherwise unable to parent.11 Some of the recent increase in custodial grandparents has been due to the opioid epidemic.12 Drug overdoses are rising sharply, as are deaths due to drug overdoses. Fully 66% of the drug deaths due to overdose in 2016 involved opioids, including prescription drugs such as hydrocodone, illegal drugs such as heroin, and synthetically manufactured drugs such as fentanyl.13 The number of drug overdose deaths due to opioids was five times higher in 2016 than in 1999. Even greater are the numbers of persons who do not die, but who struggle with addiction on a daily basis, undermining their ability to parent their children. Nearly 20% or more of the U.S. population has a family member addicted to opioids or other substances.14 When parents are addicted, children may be removed and placed with relatives, often grandparents.15 On May 13, 2018, a CBS investigative journalism 60-Minutes episode ran a piece titled, “Opioid epidemic leaving grandparents to raise grandchildren: A million children now live with their grandparents primarily due to their parents’ addictions, increasingly because of opioids.” The program interviewed many grandparents who are delaying retirement and spending savings to rescue their grandchildren from parents’ addiction to opioids and other drugs. The process of becoming de facto or legal guardians and custodians can be arduous and frustrating to many grandparents, particularly because there is so little support.16 When grandchildren have disabilities, custodial grandparents indicate that

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their difficulties include dealing with their adult children, establishing legal guardianship, managing the symptoms of the disabilities, increasing financial concerns, growing social isolation, and on-going worries about the future.17 In some cases, the transitions have been seamless; in others, grandparents have gone to battle within the judicial system to take custody of their grandchildren.18 The laws for custody vary state by state.19 In most states, even in case of death, divorce, incarceration, or drug abuse, grandparents have to petition the courts to gain custody of their grandchildren. Deploying often limited resources to prove that adult children are unfit parents, and then taking grandchildren into the home and providing for all of their needs, is not a scenario many grandparents ever envision. Becoming de facto or legal guardians adds to the work of caring for grandchildren with disabilities, particularly if the children have been neglected or abused, or if the parents are uncooperative. Our results echo those of other studies and support cumulative inequality theory. Because they tend to have lower incomes and education, and greater demands on those limited resources, custodial grandparents tend to have more adverse financial, social, emotional and physical consequences.20

Becoming De Facto Guardians Some families transfer guardianship unofficially, with neither CPS nor the courts being involved. Typically, they live in the same household and grandparents gradually begin providing more care as their adult children provide less. When addictions or other mental health problems emerge, or reignite, grandparents become de facto guardians. They care for their grandchildren with disabilities for as long as needed. Then, when addictions and mental health problems are back under control, grandparents may take a step back. Grandparents may encourage their adult children to resume parenting, but remain vigilant. I Honestly Don’t Know What She’d Do Without Me. It Worries Me Arlene is one of a few grandparents we interviewed who is a de facto guardian. She does not have legal custody, but she provides care when her adult child is not able to do so. Arlene’s daughter and two children live with Arlene, age 53, and her husband. Carl, age eight, has cerebral palsy. Arlene quit her job to care for him, at least 28 hours a week. Though not Carl’s guardians, they cared for Carl for two years on their own while their daughter was drinking, recovering, and then moving away to live with a boyfriend. When Carl started living with us, she was having some problems. She started drinking because she couldn’t deal with a lot of the situation. She was on her own. She was a single mom, and she couldn’t, you know, it was a lot mentally and physically. And, then she started drinking, and then she went to treatment, and then she decided to move to where her boyfriend was.

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Arlene says that Carl would not have been able to receive good medical care with his mother, and insisted that he stay with her. Thus for two years Arlene and her husband were his de facto guardians. I told her she couldn’t take Carl because it’s too far away from everything he knew, you know? And the medical field and hospitals and stuff too. And, they didn’t have the facilities, and therapy—it wasn’t an option in that area. They would have had to drive like 45 minutes one way to get the therapy that he was getting here, and he would have to go through all new doctors and therapists.

Now her daughter has moved back into Arlene’s home, works full-time, and contributes to household and medical expenses. She cares for Carl but is unable to provide all the care he needs. So, Arlene and her husband remain Carl’s primary providers. Because her daughter is unable to afford accessible housing, Arlene does not see a way for them to move out. She says her daughter in not able to provide for Carl without her help. I honestly don’t know what she’d do without me, it worries me. You Just Do What You Need to Do, and Mama Will Take Care of You Similarly, Karen has been a de facto guardian since her first grandchild was just three weeks old. Two of Karen’s children, and both grandchildren, have disabilities and serious health conditions. Pam, age two, has intellectual disability, epilepsy, and sensory processing disorder. Karen, age 40, and her mother are both nurses and they both have extensive experience caring for Karen’s two children who have had serious health problems and disabilities. Karen said when her daughter expressed concern about her newborn, Karen took the baby to live with her. Though not her legal guardian, she said she provides 90% of Pam’s care including feeding, bathing, and sleeping with her. When Pam came into this world and they noticed some things within the first months. . .They had Pam for like, maybe three weeks, and my daughter called me and she said, “Mamma, you gotta do something. I don’t know what to do.” And, so, I went and got Pam, and she has actually been with me since she was three weeks old. And, then, my daughter, she moved back in when she was pregnant with her son, so Pam was six or seven months old when she moved back in with me, and she was like, “I don’t know what to do.” It’s okay. . .You know because the doctor’s kept saying somethings not right, something’s not right. She’s not doing like she’s supposed to.

Now Karen’s daughter and both of her children live with her and Karen devotes most of her time and energy to caring for her two grandchildren with disabilities. And, with her having two children that are disabled, it’s just hard on her. And, I’m like, baby, I got this, mama’s got this, you just do what you need to do, and mama will take care of you.

Becoming Legal Guardians Reluctantly, increasing numbers of grandparents are becoming legal guardians of their grandchildren with disabilities when parents are unable to parent. We interviewed grandparents whose adult children were struggling with addictions, mental

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health problems, prison sentences, and abusive relationships. Sometimes, adult children or CPS asked grandparents to become legal custodians; other times grandparents had to wage costly and lengthy court battles to take legal custody. Often they were trying to avoid having their grandchildren placed in foster care, or they were advocating to get them out of foster care. In every instance it was a fight they had never wanted to fight. But once it became necessary, they fought to win. On the line was the health and welfare of their grandchildren who, in addition to growing up with disabilities, were often neglected or mistreated. Having legal guardianship is important; grandparents who are merely de facto guardians are often not permitted to manage issues that arise with schools, medical treatments, or social welfare benefits like Medicaid or SNAP. I Decided to Go to Court and Take Custody of the Older One Often grandparents take custody because of their adult children’s mental and cognitive health issues. Carole, age 74, has a daughter who is diagnosed with learning disabilities, with an IQ of 62. Carole has custody of three grandchildren, including Nico, age 11, who is on the autism spectrum. Carole’s daughter is bipolar and has relationships with multiple men at a time. Carole is unsure of the fathers of some of her grandchildren. Carole did not have difficulty getting custody of the grandchildren. When she was pregnant with the second child and she decided to go do down to North Carolina, while she was having Braxton hicks’ contraction. And I decided to go to court and take custody of the older one. Then when the second was five, I took the second child too. Then she met another guy who was disabled and she got pregnant again and gave birth. Then I took him too. Social services took him as soon as he was out of the hospital. . .He is now 11. All three live with me.

Though Carole is sole legal guardian she gets some help from her ex-husband, who helps out on the days that their daughter has visitation. He has the same visitation patterns that we have with our daughter, Tuesday after schools, Thursday and Saturdays. If there’s no school he would offer to take Nico to run errands. There are no other sets of grandparents.

They Decided That If We Did Not Keep Her, They Were Putting Her in Foster Care Many grandparents become legal guardians to avoid placing grandchildren in foster care while their adult children struggle with mental health or addiction issues. In Kim’s case, it was both. Kim, age 59, has a stepdaughter with bi-polar disorder, a heroin addiction, and five children with whom she has no contact. Kim and her husband are sole legal guardians of two: Izzy, age 17, and Matt, age ten. They have had Matt full-time since he was 14 months and Izzy since she was 12 years old. Our daughter has struggled all her life from age 13 with mental health issues, she was diagnosed with bi-polar and schizophrenia. She has struggled all her life with drug use. It started mild and she is now a full-blown heroin addict. She has been in treatment several times, we have paid three times for treatment. She was in forced treatment at age 16. She did ok for a while but then she goes off her meds, she thinks she can handle it, something happens, and then she is back down that rabbit hole again.

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Kim’s step-daughter has had five children with four different fathers and the children rarely see either of their parents. She lost all rights to all of the five kids nine years ago. Before that she was in and out of their lives and she would try to pull things together but then not meet some state requirement and then she would lose them again. But a little over nine years ago all of her rights were terminated with all five children.

Kim says that Matt was born drug affected, with feeding, sleep, and audio issues, and was put in foster care at one month. Kim and her husband did not find out he was in foster care until he was six months. The state called Matt’s biological maternal grandmother and asked that she take Matt, but she was already raising two of their daughter’s children and asked Kim and her husband to take Matt. They agreed to do so but there was nothing easy about the transition. We were empty nesters with our seven kids launched to college and adult life, and we had downsized from our large house in the country to a smaller two-bedroom condo near work, and I had just turned 50. . . It took till Matt was 14 months to get the process done. The state kept giving my step-daughter every opportunity to not lose her parental rights. We made twice-a-month visits, a two and one-half hour drive each way, to visit him during all those months and then at one year we started to bring him home with us a few days at a time. Finally, at 14 months, we were his legal guardians. He was in four foster homes before we got him full-time.

Now age ten, Matt is diagnosed with ADHD and taking medications. They have devoted a great deal of energy to obtaining good diagnoses and therapeutic treatments to encourage his development. Matt is ADHD. He is on meds now we will see how that works for him. We changed schools, got better doctors, we are trying to be really proactive.

Izzy came to them at age 12. Her biological maternal grandmother had been raising her but was no longer able or willing to continue. If Kim and her husband had not agreed to become legal guardians, she would have entered the foster care system. While the transition with Matt took more than a year, the transition with Izzy occurred in a single day. Her grandmother moved several times and the situation had become too emotional and too violent and volatile. The grandmother decided she was done, she abdicated her duties. The uncle tried to help but he was not prepared for what Izzy had been through, and it was not a good relationship. So they decided that if we did not keep her, they were putting her in foster care. We had asked her to come for a brief visit, we missed her and wanted her to know her little brother, and so she came to visit. But they took that as an opportunity to send her to stay. At the airport, as she was about to fly to see us, they told her that if we did not keep her, she would be going to foster care. She would not be coming back to them. They told us the same, if we did not keep her she would go to foster care. She arrived angry and hurt. And we kept her.

Though she is 17, Izzy was only recently diagnosed with ADHD. She has a lot of emotional issues but Kim is unsure whether they are due to her disability or to the trauma of being raised by her mother and other relatives. Kim wishes they had been more proactive earlier in obtaining therapies for her.

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We waited too long, it was hard to tell if we were dealing with trauma from her mom, or ADHD. We have just now gotten diagnosed with ADHD. She has a lot of the traits that kids who end up at the grandparents have, attachment issues, not fully mature. She has a lot of emotional issues

When CPS Calls and Asks You to Either Take Custody or to Go into the Foster Care System, If You Can, You Do Jacki also took custody of her granddaughter to keep her from entering foster care. Jacki, age 65, and her husband adopted her nine year-old granddaughter, Mona, who is diagnosed with ADHD. Jacki’s middle daughter, who has drug, alcohol, and mental health issues, has four children. She has custody of none of them. She was living with Jacki when her last one was born. The father left her after a while because he was abusive. About three months later Jacki’s daughter took the baby to see the dad. Jacki, with CPS and law enforcement assistance, spent two and one-half months looking for them. They finally caught her daughter and she was taken to jail. CPS told her to give Jacki custody or they would put Mona in foster care. She granted Jacki and her husband custody. I said I would never raise my grandchildren but when CPS calls and asks you to either take custody or to go into the foster care system, if you can, you do. We have adequate housing and income for her. I was working still then, part-time teacher at that point.

Jacki’s daughter was in prison for the first year Jacki had custody. CPS warned Jacki and her husband that if they did not adopt, there would be no legal reason their daughter could not take the child when she was released from prison. Jacki and her husband began the process of adoption; their daughter resisted but finally signed the papers. After persistent legal effort, they have now adopted their granddaughter. The Straw That Broke the Camel’s Back Was the Combination of Stealing from Me and Bringing Drugs in the House The opioid epidemic has brought out the worst in many parents and, perhaps, the best in many grandparents. Like most, Elsie never expected to become sole legal guardian of her grandchild but there was little choice. Elsie, age 62 never married but adopted a daughter at age nine who had ADHD and learning disabilities. As she grew older, Elsie’s daughter began to use drugs. When she became pregnant she and her newborn son lived with Elsie. But when her daughter stole money to buy drugs, Elsie told her to leave and kept Curt. Elsie is now Curt’s sole legal guardian. Elsie is unemployed due to disabilities and struggles to support them both on just $23,000 a year. Curt, now age 11, has ADHD and learning disabilities. When her daughter became pregnant Elsie urged her to abort or put him up for adoption. This is not what I ever imagined. When she first told me she was pregnant I encouraged her to consider adoption. We knew, we both knew, that being a mother was never going to be a viable choice for her. But she decided she was going to try it, and not surprisingly it did not go well. Repeatedly, I told her I was not going to raise this child but, surprise surprise, I’m now raising this child.

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Though Curt’s parents never married, Curt’s father is in continuous contact. Elsie’s daughter and grandson lived with her for a while but Elsie’s daughter frequently broke the rules. When Curt’s mom was also living with us she was making some pretty poor choices, meeting with some unsavory people we will say. She was stealing from me, primarily stealing money to buy drugs, and the straw that broke the camel’s back was the combination of stealing from me and bringing drugs in to the house. She knew those were deal breakers. And when she did that I told her she had to move out. And that she was not taking Curt with her.

Neither of Curt’s parents are permitted by the courts to be his legal guardian. Now Curt may only see his parents during supervised visits. We have regular contact, and she and his birth father were just here to visit Curt his past weekend, for Thanksgiving. She still has difficulty making good solid choices. She also has ADHD and some learning disabilities. His dad also has ADHD and some learning disabilities. Right now his biological parents are living together, though they went for a long time being not together. His biological dad is a registered sex offender. They only have supervised visits, supervised by me. . .They both have their hands full taking care of themselves.

Elsie expects to remain his legal guardian until he is an adult. Whether apart or together, Curt’s parents are not able to establish a home that would provide safe, appropriate care for Curt. I don’t anticipate them ever being able to parent Curt full-time, that Curt will ever live with them. I feel with 99.9% certainty he would not be with dad, for mom it would depend if she were in a stable relationship with a man who was not a sex offender and who could provide a stable situation. Curt’s mom has a medical marijuana card, his dad was never really into drugs. I’m uncertain whether she is using other drugs but I don’t think so. They have poor life skills. They are often homeless or near homeless, for a while they were living in a barn, without heat. At their place now the boards are rotting.

I Have Had Custody of Him Since He Was Two Months Old Similarly, Lizzy reluctantly became a legal custodian due to her daughter’s addictions. Lizzy, age 55, has had custody of her oldest grandson, Mark, who is 12 and has ADHD, since he was two months because he mother was addicted to drugs and his father died of a heroin overdose. I did not imagine she would do drugs, she started when she was 16. And I did not image she would have a baby so young. But when she said she was pregnant I thought that would make her stop doing what she was doing, stop the drugs, but she did not. I had to tell her I’m not raising a baby, but she kept doing drugs. Finally, I said she had to go to a home for pregnant women, or to the bus stop, because she was not living here with me and doing this to my grandchild. But she had a lot of anger issues and Mark’s dad was in a halfway house at the time, and when he passed away she was still in the home for pregnant women and she had issues with drugs and anger.

The drug use persisted throughout and after the pregnancy and then escalated after Mark’s father died. Lizzy had no choice but to take Mark into her home and raise him herself.

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She did Xanax. She would eat them by the handful. Tons of Xanax. . .Then my daughter did heroin to get back at Mark’s dad for dying of a heroin overdose. So, I have had custody of him since he was two months old.

Now, 12 years later, she is Mark’s full-time legal guardian. He rarely sees his mother and when he does, she acts more like a sister. Lizzy is certain that she will retain custody, and continue raising Mark, until he is an adult. I Was Furious That They Put Them in Foster Care and Not My Home, But I Was Not Able to Get Them in My Home Sometimes grandparents take custody to remove their grandchildren from foster care. Even for those with experience in the legal system, navigating CPS, foster care, and the courts can be completely overwhelming. Donna, age 63, has five grandchildren and has adopted two. Sally, age 11, is diagnosed with adjustment disorder and ADHD and Tony, age ten, is diagnosed with ADHD. Donna’s middle son has four children with different mothers, all of whom have been in Child and Protective Services at one point in time. After she adopted the first two grandchildren, she set firm boundaries and does not get too involved with the other grandchildren. Her son is battling drug addition, mostly meth and opiate derivatives. In 2010, I had to report my son and daughter-in-law to Children’s Protective Services for neglect. Children’s Protective Services confirmed everything and got a court order to remove the children. . . .They were court ordered to be removed from the home and they were placed in foster care. . . I was furious that they put them in foster care and not my home, but I was not able to get them in my home. Finally, I was able to get an attorney and fight and overrule CPS to get the kids placed in my home. . . So this will be the eighth Christmas that we have them. The girl was three, a month before we got her, and the boy was four.

Donna is a former social worker who has many insights on how protective custody operates. She endured a home study, a drug test, a hair follicle test and jumped through other hoops to prevent the older grandchildren from going into foster care. She fought the bureaucracy of CPS to obtain the children. CPS was insisting on sending the kids to foster homes. They told me off, basically, and said they are going to a foster home and there was nothing I could do about it. They just happened to get a social worker who understands the system, and lives in the county and it rubbed them the wrong way. I used the words power and control, there are no other words because it wasn’t about the children, it was about me and the power and control of CPS. They said if I showed up at the office I would put the kids through more trauma and they will call the police to send me away and get a warrant.

Donna hired an attorney but the process to gain custody was still arduous and for the most part unsuccessful. I can’t tell you how many times we went to court for this or that or through the system, and we learned really quickly that we had no rights whatsoever. We couldn’t even see the kids until the parents passed their drug tests. Me, as the paternal grandmother, it was all about my son. But, my son couldn’t pass the drug test so I couldn’t see my grandkids. I found out they had placed the children with a first-time foster mother in an entirely Black neighborhood. . . My 11 year-old son has an uncanny memory and the stories that he has told me about that home bring me to tears. He went through trauma; she would lock him in the room, took him trick-or-treating and took their candy away. When I finally got visits from CPS it was

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supervised and it was pretty far into the placement, so I would always bring a toy and she would take the toys. I didn’t hear about all of this until later, because my son could not process all of this.

Donna was deeply concerned about the children’s safety during the process. At times she was worried about her own safety. When I went, I went out to the car and it wasn’t safe and the upholstery of the car seat had metal poking out. I am an extremely assertive person but at that point they had me so scared that I decided to not make an issue because I wanted to see those kids so badly that I chose not to say anything because they would turn that first visit into something negative and I was afraid they would take away my visit. I didn’t do it but then they failed my home study that was it with me being nice. The attorney knew everything about the safety issues so it took a short emergency hearing until I got those children.

Donna was persistent and continued to fight through her attorney and eventually succeeded. She says she only prevailed in her attempts to gain legal custody because she was able to get the CPS case closed. It did not go right away to me being able to adopt the children. Eventually, it got to CPS being done with their power and control. I was awarded pretty quickly and CPS knew that was that, we were getting the children. Their plan in place was a foster adoption; we weren’t getting the kids. But, I outsmarted them. It took a while but we got permanent management conservator so it meant the CPS case was closed and they were ours. Mom relinquished her rights, and they kept my son’s rights intact because I had permanent management conservator so they trusted him with me.

Years later, she wished her son had relinquished his rights from the start. When his subsequent drug behaviors threatened her ability to adopt her grandchildren, Donna played hardball with her son to force him to relinquish his rights voluntarily. For four years, my son screwed up and didn’t do anything he was supposed to do. So after that we were going to take them to court to get his rights severed so we could officially adopt the kids. Because he didn’t do any part of his plan and he was still actively using. He would take off for months at a time and it was detrimental to have him in their lives. He refused to sign away his rights voluntarily and then I met him in the attorney’s office and I told him that he had 15 minutes to decide what he’s going to do. And if he didn’t voluntarily do it, I would be done and take him to trial and win but he would cost us much more money in the adoption. The consequence for this behavior would be for us to disown him as our son. If you do the right thing, you can get your life together and be able to reunite with our family. I was going to leave for 15 minutes and he decided to sign. That was another $6000. And we went to court and the judge saw right through everything and said to get it done right now so we could close this case. She gave us full adoption.

Donna’s son finally started gaining control of his addictions after a near drowning of his third child. He and his girlfriend were meth users and was not supervising the child. She was at the bottom of the pool before they realized she was gone. After months of being in a coma, the child was able to regain some of her abilities. This incidence was the catalyst to get Donna’s son to stop using drugs. Understandably, Donna expects to retain custody of her grandchildren until they are adults.

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That’s My Baby, She’s Coming Home with Me Some grandparents have had to negotiate a complex legal system to gain custody and protect their grandchildren from abusive parents. Violette has custody of all five of her grandchildren, ages 2–13, and all five have disabilities that are likely linked to their mother’s bipolar disorder and drug addictions. At one point, Violette’s daughter, and son-in-law, and oldest grandchild, Noelle, were living together and that is when Violette started noticing that her son-in-law was abusing Noelle. Violette recounts the first incidence of abuse that she witnessed. He was putting her up to his chest and trying to suffocate her. We pulled her out of the room, put her in with us. I called the CPS hotline because at that time I was struggling with my everyday things, and they wouldn’t do anything about it. I said she would stay in my room, I would take care of her, and he wouldn’t touch her. My daughter got mad and her and her husband moved out with my granddaughter because I had no legal custody of her. About two months later Noelle ended up in the hospital. She died on us three times. She was in the children’s ICU.

Violette’s son-in-law was arrested and went to prison for two years; he was released early from his four-year sentence for good behavior. Violette initiated an order of protection against the son-in-law to prevent contact with her and Noelle. I contacted our local police department and I went down to probation and they gave me a temporary order of protection right then and there on the spot. We went back to court and the judge told him zero contact with his kids.

Violette was told that Noelle would be placed in foster homes. Violette categorically refused, I said, “That’s my baby, she’s coming home with me.” And I wouldn’t let her go to foster home.

Violette laments the difficulty she went through while attempting to get custody of Noelle and the other siblings while simultaneously dealing with their troubled parents. It’s very difficult being a grandparent. I think after a while parents stop losing their rights. I think grandparents that have their grandchildren for an excessive amount of time, should have that right to say, “We don’t want you here” to the troubled parents.

Violette’s daughter’s drug addiction has made it difficult for the children. She would come to visit the children, steal from Violette to support her drug habit, and then go long periods without visiting them. The children would become attached to their mother and then she would disappear again. Moreover, Violette worries about the impact of the foster care system on her grandchildren with disabilities’ wellbeing. I just hope that she could stay out of their lives. They never took away the rights from the older girls’ father either. Considering everything that happened to these children, when they went to foster care, they should’ve done that right off the bat. I’ve fought from the day that they took the kids. That day I filed for full custody of the children. I fought for over a year, the whole time they were in foster care. Their mom and dad said, “We’re willing to give my mom full custody of the children.” Now that they’ve been in the system, they’ve been screwed up. They’re not the same children that went into the system. They’re definitely not

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the same kids. They did want us to adopt the three little ones but they wanted thirty years of where you lived to adopt them and the paperwork. They ask everybody that. They track to see how long you’ve lived at each one. If I’ve had the kids for a year and they see improvement in these children and they don’t see the parents stepping up to the plate.

Violette has provided extensive, around-the-clock care for two of the grandchildren for a few years and she now sees some improvement. We’ve had the little ones for two years now. They don’t see what we’ve done for these kids. Take their rights away. The day I finally got full custody of these kids, they were gonna take their rights away, they were gonna put these kids up for adoption and I said, “No you’re not. I have legal rights.” The other grandparents don’t want anything to do with them but I do. I am their grandmother. I am their maternal grandmother. I want my rights.

Through all these tribulations, Violette has felt a great deal of animosity toward the children’s parents and the legal authorities. But she has no regrets about taking full custody of her five grandchildren. I don’t know what I would do without my kids. I feel like I would be the one going in the corner and staying there. My depression would kick in. They make me happy and they keep me on my toes.

Relinquishing Guardianship When adult children regain control over their addictions and mental health problems, sometimes they want to regain control over their children as well. However much grandparents may wish that their adult children would be able to raise their own children, they are often wary of such proposals. Particularly if they have waged a legal battle to gain custody of their grandchildren, few are willing to relinquish it. They have often watched their adult children fight with substance abuse, or bi-polar disorder, or other mental health issues year after year and are well aware that relapses are a distinct possibility. While they are concerned with the welfare of their adult children, they are much more concerned with providing their grandchildren with disabilities a stable, loving, healthy home life. For grandparents, the goal is to do what is best for the grandchildren. They Think Zak’s Parents Are Druggies and Tried to Kill Him. But They Are Not and They Did Not No matter how reluctant they were to become legal guardians, most grandparents whom we interviewed felt that they would retain their title until their grandchild reached adulthood. Few could see a clear plan to relinquish custody. Joy had no intention of gaining, or relinquishing custody, but the state of New Mexico had other ideas. Joy, age 60, had legal custody of her great grandson Zak for ten months. Initially he lived with his parents, but at one year, Zak stopped breathing and now has cerebral palsy and cortical vision impairment. The courts faulted his parents and placed Zak in custody of Joy for ten months. When we did the interview, Zak had just been placed in foster home due to failure to thrive under Joy’s care.

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Zak was born normal and lived with his mom and dad. His mom was just 18 at his birth. Then just before his first birthday, he had an incident of stopping breathing. One month later, CYFD(Children Youth Family Division) decided to take him into custody, when he was just about one year old. . .and placed him with me. He stayed with me for ten months, and he needed a feeding tube. I was talking with Johns Hopkins about changing him to oral feeding rather than solely tube feeding, and I was in the process of changing him to oral feedings. I had him going to therapies five days a week, including aqua, massage, ground, OT, PT and feeding therapies. We were very active. But he fell below the 5% of bodyweight, meaning he was then failure to thrive, so CYFD said I was neglectful, and they took him into custody.

Joy and her family are still reeling from the decision by CYFD to remove Zak from their care. They are trying to grapple with the accusations that their care was inadequate and simultaneously wage a lawsuit to regain Zak into their custody. He is now in a foster home, and I’m limited to three hours a month. Prior to September, I had him 24/7. He lived at my house. It’s dumb, but you have to go back to their original view of him. How can a “cationic vegetable” walk and eat and crawl and go to therapy. They wanted us to just park him. They said I neglected him.

While Joy does not know what caused the episode where Zak stopped breathing, she is convinced that protective services jumped to the wrong conclusion because of the age of Zak’s mother and the race of, and number of tattoos on, Zak’s father. The original incident – before that he was normal – and they do not know what caused it, was loss of oxygen. I think he aspirated and stopped breathing. His father is Hispanic and African American, tattooed from head to toe, and I think stereotypes took over. The mom is young, she was 18. The minute they walked into the hospital saying “he stopped breathing” the staff assumed that the dad was a drug user and that they tried to kill their own kid. All of his drug and urine tests have come back negative. But it was a stereotype. Had I walked in with him we would not even be here. New Mexico has drugs and gang problems, and the stereotype infiltrated. We are speculating, we have no proof of what happened. My youngest was SIDS, and we monitored him and he did not die from it, but it might run in our family. But the doctors won’t entertain that idea at all. They think Zak’s parents are druggies and tried to kill him. But they are not and they did not.

Once Zak was labeled as failure to thrive, his parents and grandparents have limited and supervised visitation only. When he lived with me, his mom and dad and grandmother got to see him all the time. Now that he is in a foster home, they are limited to 20 hours a month.

Now, having lost custody because they diagnosed failure to thrive, Joy is very frustrated. She is angry that the doctors have such low expectations for Zak, and now that he is in foster care, worried that he is not receiving the multitude of therapies she had arranged for him. She talks passionately about her constant efforts to advocate for Zak within a system she, and he, must continue to rely upon. I saw him and still do as a viable human being that just needs to be spent time with. I was emotionally optimistic about what he could do and what we were going to accomplish. But from the medical standpoint, I saw the doctors as oppressive and that angered me. It was a constant fight and still is, to say this child can walk, we just got to get him there. This child can talk, we just got to get him there. This child does not have to be on a G tube, we just have to get him there. And to have all this oppression, it is a daily constant fight, and that has real wear and tear on me. How can I fight the system for him? It does not diminish my outlook for

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him. How do you become an advocate without alienating and causing more grief, within a system you need?

At the time of our interview, Joy was gearing up for a legal battle to regain custody. If she can get him back under her wing, they plan to move to another state that is more progressive in thinking, and in service provision, for children with significant disabilities. She had never imagined taking custody of Zak, and she would never willingly have relinquished it. Her battle with the state of New Mexico will play out in court. We have a legal battle going on. I’m fighting to get him back. The federal and local statutes are all about reuniting with families. So the first battle we are fighting is to get him back into the family. The second battle is to get him out of state custody and make him mine solely. The next goal is to get him to the best program, Johns Hopkins is ranked number five and we want him to go there because they have a pediatric CVI specialist. And there is a great program for feeding tubes in Indianapolis, to get him off the tube and becoming an oral feeder. The goal is to get him away from here where there is nothing and to places where he can be a viable human being. We would move in a heartbeat. But we can’t until we have him. When I get guardianship we will move east of the Mississippi.

If I Noticed Anything Wrong, I Would Pull My Granddaughter Back in a Heartbeat When grandparents wage substantial legal fights to gain custody of their grandchildren, it is understandable that they might be very reluctant to relinquish that custody. Problems with addiction and mental health issues may come and go and grandparents are determined to avoid any unnecessary disruptions in their grandchildren’s’ lives, particularly when their grandchildren have disabilities. Candi is not considering relinquishing custody, but she has agreed to a lengthy maternal visit. Cautiously. Candi, age 61, and her husband sued for custody of the oldest granddaughter, Aly, age 12, soon after her birth. Aly had low birth weight due to maternal and paternal drug and alcohol use, and is now diagnosed with ADHD and asthma. Now that her mother is more stable, Aly occasionally visits her mother, who lives ten hours away. My granddaughter has ADHD, her mom was doing drugs when she was born, she was a drug baby, weighed four pounds when born, has had to deal drugs in her system at birth. And her dad is an alcoholic, his mom started him on wine coolers when he was just 16 years old, so had to deal with that too. She was full term and born at four pounds.

Candi and her husband raised Aly since birth. In kindergarten she began to have seizures and difficulty with retention. She was diagnosed with ADHD and Candi said the medications seemed to help a lot. Then when Aly was nine, Candi’s second husband died and Candi switched from part-time to full-time work. That meant Aly was home alone after school a lot. As Aly entered puberty, she began to develop ticks, anger issues, and a preoccupation with frequent bathing. As she has gotten older, that was one of the decisions my daughter and I made is her going to live with her mom. As my granddaughter has gotten older, and I have gotten older, she has gotten more difficult, and that has gotten harder for me. And we wanted mom to try. She can come back to me, but we want to give mom a try, and mom has been substance free for years. Mom has never had her.

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At the time of the interview, Candi still had legal custody of Aly, but they were in the midst of a four month trial to see whether Aly could live with her mom instead. My granddaughter has been with her mom for four months now, since she turned 12, and she is doing really good. Her grades slipped, which we expected that at a new school. But her mom is really stepping up to the plate and being a mom for the first time I’m so happy. Anything that can help my granddaughter is wonderful I wish my daughter would move here so my granddaughter could have the best of both of us.

Candi cannot move the ten hours to be near Aly and her mom. When Candi’s second husband died she lost everything and had to file for bankruptcy. She can only afford to stay where she is. She says her daughter’s boyfriend is not her “cup of tea,” but he is good with Aly. Thus far the four month trial of living with her mom is going well for Aly. But Candi will not hesitate to bring Aly back to her if she is not happy with how they are raising her. She feels she needs to give Aly’s mom a chance to raise her own daughter. We need to give mommy a chance, and we are doing that now. Mommy struggled and had her own crosses to bear, and we have to give mom this chance. If my granddaughter really wants to come home then yes she will come home. And I pray my daughter will move here too. . .If I noticed anything wrong, I would pull my granddaughter back in a heartbeat. We have not talked about changing the guardianship, she is the mom but I’m comfortable with being the guardian. If anything happens I want that protection for my granddaughter.

Candi very much regrets the legal advice they received at the time Aly was born, and does her best to warn others that they need to adopt and not just become legal guardians. When we first took my granddaughter, our lawyer told us that guardianship is just as good as adoption. It is not. I tell everyone. We did not adopt her and I wish we had. When my husband died she was entitled to nothing, and if I die she is entitled to nothing, because we did not adopt her. She would be eligible for Social Security from him, since he died, if we had adopted her. We were told that we did not need to. Terrible mistake. I would tell anyone who is a guardian, “adopt.” We spent $18,000 on becoming her guardian. We should have adopted. If you are guardians, and do not adopt, you are responsible for everything but they are not entitled to anything.

Taking Custody Obtaining, and even fighting for, de facto or legal custody of grandchildren is not a choice many grandparents would make if they felt they had any other options. Often they lack the physical, emotional, and fiscal resources to raise another generation of offspring. Yet, when their grandchildren with disabilities are being raised by parents who are also struggling with a variety of addiction, mental health, and legal issues, grandparents often pursue guardianship. To fight for legal custody usurps a great deal of their money, time, and expertise. It also increases anxieties on virtually all measures. Once they gain custody, grandparents then provide for all of their grandchildren’s social, emotional, physical, medical, and financial needs. Overtime,

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as their adult children stabilize, and addictions or mental health challenges seem to be under control, grandparents are understandably reluctant to relinquish custody for fear of relapses. As cumulative inequality theory suggests, grandparents who raise their grandchildren with disabilities are often already economically and socially disadvantaged—and taking on so many unexpected responsibilities later in life taxes already thin resources. As later chapters will demonstrate, de facto and legal guardians care for their grandchildren often at great cost to their economic, social, emotional, and physical well-being.

Notes 1. Daley et al. (2018), Gallaghera (2017), Smith and Daley (2017), Baugh et al. (2016), Choi et al. (2016), Chen et al. (2015), Doley et al. (2015), Siordia (2015), Hadfield (2014), Harnett et al. (2014), Kelley et al. (1997, 2013), U.S. Census (2014), Atkinson (2013), Langosch (2012), Conway et al. (2011), Heller and Harris (2011), Livingston and Parker (2010), Baker et al. (2008), Hayslip and Kaminski (2005), Heller and Ganguly (2004), Glass and Huneycutt (2002), Goodman and Silverstein (2002), Janicki et al. (2000) and McCallion et al. (2000). 2. Gallaghera (2017) and U.S. Census (2014). 3. Gallaghera (2017) and Ellis and Simmons (2008). 4. Chen et al. (2015), Luo et al. (2012), Livingston and Parker (2010) and Baker et al. (2008). 5. Gallaghera (2017) and Luo et al. (2012). 6. Hayslip et al. (2019), Silverstein and Lee (2016) and Luo et al. (2012). 7. Bureau of Labor Statistics (2018), Vanegas and Abdelrahim (2016), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010) and Hewitt et al. (2010). 8. Carr (2019), Vanegas and Abdelrahim (2016), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010), Hewitt et al. (2010), Livingston and Parker (2010) and Baker et al. (2008). 9. Carr (2019), Gallaghera (2017), Noy and Findler (2016), Vanegas and Abdelrahim (2016), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010) and Hewitt et al. (2010). 10. Carr (2019), Gallaghera (2017), Hayslip and Blumenthal (2016), Vanegas and Abdelrahim (2016), Chen et al. (2015), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010) and Hewitt et al. (2010). 11. Gallaghera (2017), Chen et al. (2015), Hayslip and Kaminski (2005), Goodman and Silverstein (2002) and Kelley et al. (1997). 12. Daley et al. (2018) and Smith and Daley (2017). 13. CDC (2017). 14. Smith and Daley (2017). 15. Daley et al. (2018). 16. AARP (2018), Gallaghera (2017), Noy and Findler (2016), Chen et al. (2015) and Glass and Huneycutt (2002). 17. Hillman and Anderson (2019), Noy and Findler (2016) and Kresak et al. (2014). 18. Noy and Findler (2016), Janicki et al. (2000) and McCallion et al. (2000). 19. Noy and Findler (2016), Atkinson (2013) and Glass and Huneycutt (2002). 20. Carr (2019), Baugh et al. (2016), Choi et al. (2016), Doley et al. (2015), Siordia (2015), Hadfield (2014), Harnett et al. (2014), Kelley et al. (2013), Hayslip and Page (2012), Langosch (2012), Scommegna (2012) and Conway et al. (2011).

Chapter 8

Financial Contributions and Considerations

Grandparents, in general, spend a lot of money on their grandchildren. This is particularly true when the grandchildren have disabilities. Grandparent may pay for everything from ice cream cones and new shoes to speech therapy and wheelchairs. For some families, financial contributions are not needed. The parents are financially secure and grandparents are merely augmenting with gifts or trips or extras. These grandparents are spending relatively little on the younger generations and can easily absorb the expenditures. For a few, financial assistance might be wanted but grandparents attempt to set limits. But for most of the grandparents we interviewed, financial assistance is needed to help cover a multitude of living and medical expenses. Some families rely on SSI, Medicaid, or SNAP and the importance, and the volatility, of those benefits was readily apparent. When benefits are halted, decreased, or refused, families scramble to try to reacquire benefits they desperately need. Some families turn to grandparents to fill in the gaps or wrangle with the government in their stead. Providing financial assistance, particularly for grandparents who have reduced work hours, changed jobs, retired early, or moved to new locations, can be difficult.1 If they are reducing income as they are increasing expenditures, the financial impacts can be quite worrisome. When household income is relatively low, it can be even more difficult. Those who become custodial guardians often have even fewer resources yet financial responsibilities fall almost entirely on their shoulders.2 They bear much of the financial burden; they have little choice but to cover expenses. Grandparents in these latter groups, often already short on resources, may face their old age with limited financial security. Providing financial assistance to their adult children and grandchildren with disabilities creates a real conflict for many middle-aged grandparents who are at a stage in the life course where they should be working and saving resources for their retirement. Retirement financial planning is vital, but most of the grandparents we interviewed never planned to be providing the level of support that they are currently providing to their grandchildren with disabilities. As cumulative inequality theory suggests, some have sufficient earnings and savings to take these expenditures in stride, but for many it creates real financial hardship. Indeed, some are deflecting © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_8

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contributions from retirement accounts to their children and grandchildren, and they do so even though their own retirement investments were hit hard during the Great Recession of 2007–2009. Others are draining their retirement savings to pay for medical care and living expenses for their grandchildren with disabilities. And some are taking on new debt, usually via a second mortgage on their homes. As a result, many are delaying or foregoing travel, moves to new homes, going out with friends, and, in a few cases, their own medical care.

The Costs of Financial Contributions Studies show that grandparents provide a great deal of financial support, covering everything from basic necessities such as baby formula and clothing to house cleaners and physical therapy.3 One study found that grandparents covered a wide range of expenses.4 Some were helping in modest ways with occasional expenditures for gas, food, clothes, and gifts, but others were helping with major monthly expenses such as electricity, rent, or daycare bills. Further, some were paying for luxuries including Spanish camps, private schools, house cleaners, flute lessons, designer clothes, and travel abroad. An on-line study of grandparents of grandchildren with autism found that many were making substantial monetary contributions. Fully 56% reported that they were making monthly contributions to therapeutic needs and 43% had drawn on their retirement funds or delayed retirement to cover medical and living expenses for their grandchildren.5 Because children with disabilities often need more care and treatments, and often have fewer care options, grandparents may well be providing a great deal of financial support.6 The financial impact on grandparents often involves foregone wages. Grandparents may well be the most desirable source of childcare, but increasingly people in that age group are employed.7 In 2018, about 35% of women and 46% of men 55 years and older are employed.8 Studies show that working grandparents are just as likely to provide care as those who are retired and one-third change their work schedules to accommodate grandchild care.9 Some working grandmothers who are caring for grandchildren with disabilities make themselves more readily available to provide care for grandchildren with disabilities.10 They change to jobs with more flexible schedules, use their paid vacation and sick times, or reduce hours altogether to care for grandchildren with disabilities. Others are retiring early to be more readily available to provide care. Some are taking time from work to drive grandchildren to specialized therapies and paying for some of the therapies. In general, there is less money coming in, due to reduced employment, and more money going out, due to grandchild expenses. Hillman et al. (2016) found that among grandparents who cared for grandchildren with autism, while some reduced hours or retired early to care for grandchildren, others have delayed retirement and devoted earnings to paying for medical care and other expenditures. Similarly, we found that while some grandparents are reducing hours of paid work to perform more unpaid care work, others are delaying retirement and maximizing income to pay for needed care.

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Though some studies show few economic impacts of care work, others show that workers caring for family members, particularly those caring for multiple generations, may reduce hours, refuse or limit travel, switch to more flexible jobs, decline promotions, or even leave the labor force.11 The economic impact of caring for grandchildren with disabilities may be particularly problematic because of the Great Recession. The percent of U.S. families with retirement accounts declined, and the value of those accounts declined as well. Between 2007 and 2010, families headed by a person ages 35–44 lost 20%, and families headed by persons ages 45–54 lost 10%, of the median value of their retirement accounts.12 Wealth gaps between whites, Blacks, and Hispanics have risen to record sizes.13 Many middle-aged people lost substantial portions of their old age investments and have little time left in the labor force to attempt to recover those losses. As cumulative inequality theory suggests, though some can readily afford to provide substantial financial assistance many cannot, particularly since they lost so much in the Great Recession. Most worrisome are those who are diverting income away from their retirement accounts, exhausting their retirement investments and accounts, or accumulating new debt they have little chance of ever repaying.

Spending Relatively Little Some grandparents spend very little on their grandchildren with disabilities, either because they cannot, or chose not, to do so. Their financial help may not be needed because the adult parents have plenty of resources to cover expenses. Or, their financial help is ill advised because they simply do not have enough to spare. But even those who spend very little may instead be foregoing wages to provide care. Some have reduced hours or retired early to care for their grandchildren with disabilities so their incomes are diminished. Even though they may not have more money going out, they may well have less money coming in. They Never Ask for Help with Money, They Have Never Wanted It Ina is one of a few grandparents we interviewed who provides little financial assistance. Only 46, she has already left work, and put her MA on hold, due to her own disabilities. When she hurt her back on the job, the corrective surgery left one leg paralyzed. Several times a week, she and her husband, who have a household income of $200,000, watch Ray, age three, who has Down syndrome, and his little sister. Though they easily could, they do not provide financial assistance because it is not needed. Like many grandparents, however, they often arrive with toys, particularly educational activities. My daughter and son-in-law both have degrees and they never ask for help with money, they have never wanted it. We buy them toys and learning stuff.

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I Don’t Help Financially Often Some grandparents offer help that their adult children decline. Bree, age 76 retired 17 years ago and now works part-time. She lives just 15 minutes from her granddaughter Ava, age 13, who has Down syndrome. Her annual income is just under $60,000, including her Social Security, private pension, and current income. She has provided some financial assistance, and would be willing to provide more if needed. I don’t help financially often, but my daughter wanted to go to a nursing conference that cost $2,000 and I offered to help, and lent the money to her for that. When they were little I offered to hire a house cleaner but they did not want to do that.

My Son-in-Law Makes Good Money Some grandparents have too little to offer much. Maria, age 71, cares for her grandson Marco, who is 12 and has Prader-Willi and asthma. Maria worked as a secretary most of her life and lives modestly. She does not have a private pension and only receives Social Security benefits. With an annual income of less than $20,000, Maria does not take vacations as often as she would like. Maria is happy that her daughter and son-in-law do not need financial assistance from her. My son-in-law makes good money. My daughter is working with the association so she gets a salary. She works from home doing her mentoring and reports and conferences that she does. Financial help? Thank God they don’t need. They are good. Plus, Marco has the Medicaid. That helps a lot. They are fine when it comes to that.

I Retired Early to Help You and I Don’t Want to Feel I Am Burdened with Extra Costs Some grandparents make it clear that they will provide care, but do not want to incur many expenses. Betty, age 63, lives near her five year-old grandson Carl, who has Williams syndrome. When Carl was one and one-half, and still crying nearly aroundthe-clock due to as yet undiagnosed reflux, Betty decided to retire early and move. She had been living about two and one-half hours away, working full-time, and coming to help for long weekends every 4–6 weeks. The other grandparents took turns helping as well, but the set who lived closest were not inclined to help with a screaming baby, though they would help occupy the older child. So Betty decided to move. I decided that thanks to my parents I could afford to retire at early, at 60, and I moved to them. My daughter was exhausted and I was worried for her health. She mentioned that there was a housing development near her house and I went to look at it without telling her. I checked and I could afford to retire early. It was so cute. I called her from work one day and I said, “What would you think if I were to retire and move there?” And she said, “You are going to do this yesterday?” She could not be more thrilled. She is desperate for more help. I was willing to walk him and take him and give her a little relief. She and I are very close. She knew my being here would actually be a help.

Betty does not want her daughter to pay her for grandparenting Carl. Nor does she want her to reimburse for gas or other expenses. However, given that she retired early and her total household income is below $60,000, she does not want to take on any of the expenses for the grandchildren. She appreciates when her daughter buys her a ticket to an event or dinner.

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We talked about money a bit. Not for her to pay me, no. But if I go with you so you can do it with both boys I will let you pay for what we are doing. So if we go to an amusement park, she pays for me as if it were her husband going along instead of me. But she does not pay for the gas I use running errands, or any salary. This was my idea, and I put it in place when I moved here. I said, “I retired early to help you and I don’t want to feel I am burdened with extra costs.” When I go help for the evenings she feeds me. I get free meals often.

I’m Impacted Financially. My Income Has Gone Way Down Similarly, Paula pays for very little, but she now has significantly less money because she reduced paid work hours to provide care. Paula is a 66 year-old white, widowed, mother, and grandmother of seven year-old grandson, Mike. Because he has autism and an epileptic condition due to a rare genetic mutation, Mike requires 24-hour nursing care. Her daughter, a nurse, and Paula alternate shifts to care for Mike. Paula gave up her full-time job, sold her house, and merged her resources with her daughter’s to move to another state with better social services for people with disabilities. She is currently working part-time and takes care of Mike. When he was born we decided to pool our resources to live in one house. Mike has a lot of difficulties with stairs. I sold my town house and we bought something big enough with a garage and with no stairs. I’m impacted financially. My income has gone way down.

Paula feels that they have enough financially to live a comfortable life, but with some constraints. With her part-time work, Paula has an annual personal income of about $50,000. Since she merges her finances with her daughter’s, she is not overly concerned over running out of money. Her daughter and son-in-law have lucrative jobs. She does not spend money on Mike, but her income has decreased significantly. I’m not worry about money unless they take away Medicaid and Medicare then I would start to worry. I did take a pay cut. But I’m saving from my condo fees. And we are doing okay financially. My daughter has a great job and they let her work from home.

Since Paula moved in with her daughter and reduced to part-time employment, she is travelling less and making sure she does not spend money on unnecessary items. She explains, “I would have loved to travel a bit more. Now I have to be frugal.” It Was Just a Question of Where the Gas Money Would Be Used Some grandparents cover all of the expenses for their grandchildren with disabilities, albeit only for a short time. Joy, age 60, had custody for ten months of her great grandson Zak. At one year, Zak stopped breathing and now has cerebral palsy and cortical vision impairment (CVI). The courts faulted his parents and placed Zak in custody of Joy for ten months. Then the courts removed Zak from Joy’s care and placed him in foster care due to failure to thrive. During the ten months she had custody, Medicaid paid for his medical and therapeutic expenses and she paid for everything else. Her annual income is just under $60,000 and she is a little concerned about whether she will have enough money for her own old age. Still she says, covering expenses for Zak was not problematic.

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Having Zak didn’t really affect my finances. Buying groceries for one is the same as buying groceries for two. Traveling to his appoints, I was out and about anyway. It was just a question of where the gas money would be used – to take him to appointments as opposed to taking me to breakfast with friends.

I Usually Have a Little Extra Money So if They Wanted Something Then I’ll Provide It Some grandparents have relatively high incomes and readily make financial resources available. Belle is a 73 year-old Black mother and grandmother of two. One of her grandchildren is diagnosed with autism while the other is being tested for an epileptic disorder. Riley, age nine, is on the autism spectrum and lives with her mom and twin sister, an hour away from Belle. Belle’s daughter is well-off financially, but Belle helps her with the grandkids as much as she can. Belle still works full-time and has an annual income of about $120,000. I live alone so I usually have a little extra money so if they wanted something then I’ll provide it. Even if they don’t want something, I would get it anyway. My daughter has very good insurance, if they don’t pay some services I will. And I do, but I haven’t had to do a lot of that. I may have provided money at some point for something that insurance didn’t cover. And like right now, the kids are being tested and I have told her, ‘whatever the cost is, I’ve been working all this time, let me pay for it.’ That kind of thing.

I Often Pay for Things That They Need Similarly, with an annual household income of about $130,000 from private pension and Social Security benefits, Dawn, age 70, and her husband help their daughter and son-in-law with some of their children’s expenses. Because nine year-old Rob has cerebral palsy from an eventful delivery, they make a point to help with his medical supplies. They are also putting funds into a trust for Rob, to help cover his expenses after they have died. I pay for their horseback riding lessons, for both Rob and his sister. And I have been putting money into Rob’s trust, a trust for Rob, and I often pay for things that they need.

Perhaps most important, certainly most frustrating, Dawn helps troubleshoot with Medicaid, continually trying to assure that benefits will be stable. I make Medicaid calls every month, because they would call my daughter and say, ‘Does Rob still need diapers?’ Of course, he’s probably going to need them the rest of his life and it really upsets her so they call me now instead so I take care of ordering supplies for him. Then when he needs parts and pieces to his chair or whatever I’m oftentimes the one who’s ordering them and I oftentimes pay for it then too. So yeah, I help out financially some, but they take care of most of it.

We Do Provide Financial Assistance Some grandparents set aside money specifically for their adult children and grandchildren with disabilities. Hanna, age 71, cares for her older grandson, 19 year-old Danny, who has been diagnosed with autism. Hanna’s daughter is divorced and Hanna and her husband, who have a household income of nearly $100,000, always make it a point to help with some major expenses. We do provide financial assistance, yes, we do. Like we gave a car to our other grandson. And gave them money whenever they want. I have money set aside for her. I helped with her

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medical bills. Whether she would accept or not, I don’t care. She is the only one I have. All this will go to her.

We Pay for a Lot of Stuff Kelly can readily help pay for extra expenses. At 72, Kelly cares for Maya, age seven, who has cerebral palsy. Kelly is very comfortable financially with a household income of about $110,000 and a personal annual income of $70,000, including Social Security and private pension benefits. She does not mind pitching in to help her daughter with some of the out-of-pocket expenses for Maya’s therapy or equipment. Kelly recounts instances when Maya’s insurance would not pay for a requested test and a shoe insert to help with ambulation. I think there is something wrong. Insurance should cover for most of these things. Maya got rid of her braces now she needs to get inserts for her shoes. We have to pay for it because they say it’s cosmetic. Insurance refused to pay. They will pay for the therapy but they will not pay for the insert for the shoes. It is stupid, we just had to pay $200. My daughter had to pay $700 for an MRI because the insurance wouldn’t pay for it last year. That is ridiculous. She needed it, we had to pay for it.

Kelly not only pays for some medical care and supplies, but she also paid for travel expenses during an out-of-state trip when Maya went to have a procedure done. We pay for a lot of stuff. Because a lot of it is not covered by the insurance. They wouldn’t be able to afford all the treatments. For example, when we went out of state we spent two weeks in hotel. We rented a car. We flew out.

Kelly feels very fortunate that she has the money to help her daughter and Maya out when needed. We would do anything for them. I don’t mind paying for these things. Because I see the difference in her. That makes me so happy seeing how our money help her to get better. I decided to retired early because of my husband’s accident so when Maya was born I was already retired. I was one of the lucky ones that I was able to retire early. I have had enough hours and years at the school so I was able to get full retirement. Now I’m back to working ten hours a week.

Setting Financial Limits Sometimes adult children set limits on grandparent spending, either because they do not need all of the items being purchased or they are worried about grandparent financial security. Other times grandparents set limits on what they will spend, or at least they try to, either because they cannot afford to spend much, or their adult children have come to take the support for granted and they are worried they are enabling them to be inferior parents. I Usually Get in Trouble with Her Mom for Buying Too Much Some grandparents tend to buy more than is needed. They can’t resist that cute dress or innovative toy. They are not willing or able to set limits, but their adult children

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are. Tessa’s daughter has warned her to limit her spending. Tessa, age 61, provides a lot of care, and a lot of unnecessary gifts, for Leila, her six year-old grandchild with Down syndrome. Tessa’s annual income is just $100,000 a year, and she charges her daughter rent to live in the bottom half of the house. She sometimes buys things for Leila, but her daughter asks her not to do so. Sometimes if I see something she would like I will get it, and I usually get in trouble with her mom for buying too much. My daughter is minimalistic. She does not want her to be overwhelmed with a ton of toys. I’m limited by what I can do. If she needs something I will get it.

We Don’t Do a Lot Because I’m Not Working Now Some grandparents limit spending because their income is limited and they are concerned about having enough in their retirement nest egg. Rae, age 61, recently lost her job. She provides a lot of care for all of her grandchildren, and particularly for her three year-old grandson Paul who has Down syndrome and immune deficiency. She and her husband have a household income of just under $80,000 a year and are somewhat concerned about having enough money for their old age. They provide some financial support, but less so now that Rae is not working. Now they are trying to limit such spending. We do help a little financially, but not a lot. We help to get some clothes, or we helped her buy a special gym thing for Paul. They both have good jobs. We don’t do a lot because I’m not working now. We love to take them places but Paul cannot go out much. So we send my son and daughter out for the evening, we’ll say, “Here is some money, go for dinner, clear your brains for a little bit.

We Do Not Offer Them Financial Assistance. We Used to, Up Until Probably Three Years Ago Some grandparents set limits because over time they begin to see that their financial contributions might be doing more harm than good. Faced with a difficult diagnosis, some grandparents offer extensive financial assistance but then realize that their contributions are being taken for granted and enabling their adult children to shirk parental responsibilities. Doris, age 55, provides extensive care for her grandson who lives just a few minutes away. John, age 11, has atrophy of the brain, LennoxGastaut seizures, and visual and hearing impairments. In additional to more typical care work, Doris, who has MS, assists with his feeding tube, ventilator, tracheotomy, and catheter. Doris and her third husband, who have a combined household income of just under $140,000 have helped extensively with expenses for John and his parents. Insurance covers the medical expenses, but they have bought a television and sound system for John because he seems to enjoy music quite a bit. Moreover, they have paid for household expenses for their son and daughter-in-law. Oh my goodness, we have paid their bills. We have paid their rent. We have bought a car. We have paid utilities. We have bought groceries. And, multiple times, on all of these. I can’t count the times that we have bought them groceries. We have bailed them out of evictions, I don’t know how many times. We have paid their rent, so many times. We paid utilities, their telephone bills, all of their, any bill that you can think of, we have paid for them.

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Initially, they were all overwhelmed by John’s diagnoses and Doris and her husband wanted to help however they could. But as time passed, they have increasingly felt taken for granted. They are dismayed that neither their son nor daughter-inlaw looks for work, and even more so that their daughter-in-law stole from them. About three years ago they cut back the financial assistance sharply. A whole lot by way of financial assistance. Until it got to the point that . . .they were taking it for granted because neither one of them work. And don’t even try to make an effort to work. So that bank has closed. We no longer help them, his parents, financially. Anything that is directly for John, we don’t at all have a problem getting. But, as far as financial assistance, anymore? We do not offer them financial assistance. We used to, up until probably three years ago.

Doris began to see that she was enabling her son and needed to tighten the purse strings to encourage him to stand on his own two feet. Because I was still, being the mom, you know, I was still holding on to, that’s my son. And, he has a child that has a disability, he’s so depressed, and that’s why he’s not working. I was just making one excuse after another. . . I got to the point where all I’m doing is enabling him. . . They need to get on their own feet. You know, nobody can do it but them. So, that’s what we did. We just stopped.

Shouldering Much of the Financial Burden Many of the grandparents we interviewed cover an extraordinary amount of the expenses for their grandchildren. When their grandchildren have disabilities, expenses for medical treatments and care may be substantially higher. And when they coreside with or become legal guardians of their grandchildren, expenses often soar. Some are able to take these expenditures in stride while others cover them at their own financial peril. When financial contributions are high relative to income, grandparents often have to postpone retirement, travel, and at times even their own medical care. We Probably Would Be in a Little Bit Better Shape If It Wasn’t for Him Financially Many grandparents provide extensive financial assistance including house payments, groceries, and medical care, even though they may have retired early to provide care. Even those like Arlene, who have substantial incomes, notice the drain on their financial security. Arlene, age 53, says her daughter and two children live with her and her husband. Carl, age eight, has cerebral palsy. She quit her job to care for him, so they have substantially less income now. They have a combined household income of just under $160,000 a year but she says they have less than they need and they are worried about having enough for their old age. They have contributed a lot for Carl and his mother and sister; they pay the house and monthly bills, the food, many of Carl’s medications and medical equipment costs, and some of his clothing.

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Well, we’ve helped out quite a bit. We probably would be in a little bit better shape if it wasn’t for him financially, but. . . Mostly medical, mostly medical and, the things that he definitely needs.

It Does Take a Financial Toll Karen also left work early and pays for nearly everything. Karen, age 40, says her daughter and granddaughter, Pam, age two, who has intellectual disability, epilepsy, and sensory processing disorder, live with her. She pays for nearly everything for Pam, and though they do receive some disability benefits and Medicaid, their total household income is just under $60,000 a year and it is stretched thin. Because we have to buy all the things like diapers and wipes and formula. Pam drinks rice milk. She can’t have regular milk because of allergies. So, it does take a financial toll. It’s all in money management. When you’re down to one pay check, you know how much you’re going to make, and you divide everything up. You know how much you’ll get paid Friday to make sure you have money that the kids need.

Reliance on disability benefits has proven problematic because, for reasons they do not understand, sometimes they qualify for larger, and then other times much smaller, benefits. Reliance on Medicaid has also proven problematic because medications and treatments that the doctors order are often not approved at all or have to go through many stages of approval. Dealing with the constant red tape usurps their time and energies and generates a great deal of instability in the household and in Pam’s care. Because they cover nearly all of Pam’s living expenses, Karen says she and her husband have a little less than they need and little opportunity to store anything away for their old age. If We Were Strapped for Money, I’m Sure He Would Though they are not Mindy’s legal guardians, Joyce, age 61, and her husband pay for nearly all of her expenses. Mindy’s mother was declared unfit, and her father has custody, but Joyce and her husband care for Mindy around-the-clock. Mindy, age 13, has DiGeorge syndrome and lives with Joyce. Her main symptoms include seizures, learning disabilities, difficulty speaking, and joints popping out of place. Mindy’s father sees her about once a week, and he covers all of her medical expenses and pays for her school lunches. Joyce and her husband pay for everything else, including food, housing, clothing, transportation, and outings. Though they have a combined annual income of less than $80,000, and Joyce says they are somewhat concerned about not having enough money for their old age, Joyce and her husband do not ask Mindy’s father to cover more of her expenses. But, he might buy her clothes or take her out to eat or you know, there’s never been an issue. I would think he would if I told him to. You know, if we were strapped for money, I’m sure he would. It’s never gotten to that point.

Everything She Needs at My House I Buy Myself Marina, age 60, lives 25 minutes away yet she pays for all of Carly’s expenses whenever she visits. Marina’s household income is just shy of $120,000 per year, and while she says she has enough money, she also says she spends all of it on the grandchildren, particularly Carly, age two, who has Williams syndrome. As a result,

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she is a little worried that she might outlive her nest egg. When she started caring for the grandchildren, she says no one asked her if she wanted to be paid, they never discussed it. Nor do they offer to reimburse her for her numerous expenses when providing the care. They do not pay me for Carly. I buy everything for her here except the prescription formula. So I buy the diapers, her food, her soy formula, changes of clothing, toys, bibs, books. All that I need for her I buy. I have my own crib. Everything she needs at my house I buy myself.

I Don’t Know What She’d Do Without Medicaid; I Really Don’t Some grandparents are covering numerous expenses and are only able to make ends meet by relying on social programs such as Medicaid and SSI. Connie, age 57, cares for Andy, who is two and one-half and has cerebral palsy. Andy and his mother live with Connie and she cares for him about ten hours each week day. Connie retired early to care for Andy. She receives a small stipend from the state for babysitting him, and Andy receives a small SSI benefit, and her daughter works full-time. Their combined household income is less than $60,000. Connie says they have a lot less than they need and she is very concerned about her own old age. She pays the rent and many of the bills, and buys diapers and clothes for Andy, but her daughter also pays for many expenses. I bought diapers and clothes for him and stuff like that. Usually his mom has been taking care of him that way. I pay the rent for us to live here. I pay the power bill, but that’s about, my daughter covers all, oh, and I pay the phone bill. But, she covers their car insurance. And, I have a car, so I have to pay that.

Andy has numerous medical problems and requires frequent visits to doctors and other health care providers, therapies, and specialized medical equipment. Connie says they would not be able to afford his care or medical equipment were it not for Medicaid. He’s on Medicaid, so a lot of his supplies for his feedings stuff, his formula, any medications between my daughters personal insurance, he’s covered under, and then Medicaid, they cover a lot of stuff. His equipment he’s had to have, Medicaid has covered all of that which is great.

When Connie and her daughter hear politicians talk about cutting benefits, or making it more difficult to qualify for benefits, they grow very worried. With benefits their budget is stretched beyond capacity, without benefits they would have no way of caring for Andy. It’s scary to think that some of that might be taken away because some of the specialty equipment he has to have is so expensive. There’s no way her and I could even afford it together because he can’t even sit up for himself, so he has to have a specialized activity chair that he sits in for feeding. He can’t sit in a regular stroller, so he has to have a specialized stroller. We can’t lay him in the bath tub so we have to have a specialized tub thing for him. And, there’s still stuff that he needs that we’re trying to get him. It’s crazy. It’s really kind of sad it’s so expensive but thank goodness for Medicaid. I don’t know what she’d do without Medicaid; I really don’t.

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In addition to Medicaid, she says her grandson receives disability benefits. Though they do not understand why, Andy’s benefits were recently slashed and now he receives just $125 a month. He was getting SSI, but they cut back his SSI so far it’s not funny. It’s kind of sad that they go by income, not that she makes a lot of money. She makes the amount she does, he doesn’t get barely anything. Because he gets $125.

The amount is so small that it barely covers any expenses. Medicaid is the main stabilizer for their household financial security. Program cuts, particularly to Medicaid, would jeopardize their financial security. Whatever He Needs I Do It Similarly, Irene relies on Social Security, Medicaid, and Medicare to help cover expenses. Still, they are barely scraping by. Irene, age 73, cares for her daughter and four year-old grandson Liam, both of who have disabilities and live with her. Liam, who has ADHD and autism, receives SSDI and Medicaid benefits. Irene receives a private pension, Social Security retirement benefits, and Medicare. Even so, their combined household income is less than $60,000 per year. Though her daughter works, Irene pays for all of Liam’s expenses. She pays nearly all of the monthly living expenses including housing, groceries, and car. She is often buying new clothes for Liam because he is outgrowing his current wardrobe. He’s also on Social Security, but it doesn’t pay all his bills, so whatever he needs I do it. I pay for food and clothing and toys. Just about every week. He started out three and a half pounds; he now weighs 84 pounds. He’s going to be five next month. He requires new clothes all the time because they don’t fit him really well. He outgrows all the clothes. He’s a size ten already.

She is hoping he stops gaining weight soon, in part to reduce expenses but more so because it is bad for his heart. I Pay for Everything, His Clothes, School Supplies, Everything Like many custodial grandparents, Elsie pays for absolutely everything. Initially, Elsie, age 62, had her daughter, and grandson, both of whom have disabilities, living with her. When her daughter stole money to buy drugs, Elsie told her to leave and became Curt’s sole legal guardian. Curt, now age 11, has ADHD and learning disabilities. Elsie is unemployed due to her own disabilities and is struggling to support them both on just $23,000 a year. She has Social Security and Medicare and Curt has SSI and Medicaid. Still they are in dire straits. I have a Social Security disability benefit; that is all. But he gets SSI, for his disability. Together that is our total household income. $23,000 a year. I pay for everything, his clothes, school supplies, everything. As long as we are together and get both of our benefits, we will make it. If he moves on, then I don’t know.

In part, they are able to make ends meet because a friend lets them rent their condo at sub-market rates. We don’t qualify for subsidized housing, but we rent a condo that is owned by friends and they are giving me a good deal on the rent. I have Medicare, because I’m on disability, and Curt has Medicaid. I make $100 a year too much to qualify for SNAP.

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Another friend helps them balance the budget by allowing Curt to participate in after school and summer programs through a scholarship. If she had to pay, he would not be able to participate. She says these programs are vital to helping him learn to read and follow social cues better. The afterschool programs are very important. Here, we have a program called Fun House that provides before and after school and summer programs. We have that because the owner is a close family friend and we have a free ride scholarship. Otherwise we would not be able to afford it. Fun House is child care for school age kids, with a home like atmosphere for 40 kids. And they do a bit of everything. They focus a lot on character development, peer to peer relationships. They have snack, they play outside in the backyard, and they play group games, team sports, board games. They have a large muscle movement room. They do some reading, they can do homework, and this is excellent for Curt.

I Don’t Have the Money, Where to Go and What to Do? Similarly, Candi is a custodial grandparent who covers nearly all of her granddaughter’s expenses, including housing, food, transportation, clothing, and many medical expenses. Candi, age 61, cares for her oldest granddaughter, Aly, age 12. Aly, who is diagnosed with ADHD and asthma, is in the midst of a four month trial to see whether she can live with her mother, who lives ten hours away. Candi worked parttime at a nursery while her husband was still alive and she has worked full-time since his death. But when he died she had to declare bankruptcy. She has not had a raise in years, pays for her own health insurance premiums, and has no pension. She faces the fiscally impossible challenge of covering nearly all of Aly’s expenses in addition to her own. I’m very worried about my finances. I work full-time now at the day care center, I don’t have a pension. They don’t give any raises. I have been there three years and there are no raises. I get a week of paid vacation a year. You get a certain number of paid sick hours each year. For health insurance, I’m on COBRA and I pay $500 a month. I don’t know if I can ever retire. I don’t see how. I have no pension, no savings. Nothing.

Despite many health problems, she foresees no path to retire. Her resources are so spare that she can’t see past Christmas. I don’t have the money, where to go and what to do? If I even window shop, I will want. Financially I just don’t have it. This year Christmas will be hard, it has been a harder year.

We Pay for Everything Similarly, Kim and her husband are custodial grandparents who pay for nearly everything. Kim, age 59, and her husband are sole legal guardians of two grandchildren, Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. Kim had to quit her full-time job because there were too many interruptions once they took custody of the grandchildren. Now she works part-time from home but makes only a fraction of her earlier earnings. Their annual household income is just under $100,000. Though nearly double the national median household income, she says that amount is low for their neighborhood. Kim says they have a lot less money than they need and have been pulling $1000 a month from their retirement account. She is very worried that they will not have enough for their old age. As sole

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custodians, they have complete financial responsibility; the only financial assistance they receive is Matt’s father’s monthly child support. We pay for everything. We do not get any assistance, no benefits, no financial support. We do not even get what the foster kids get, and we really wish we did. We wish we got the monthly benefits, and the respite care, and the discount tickets, and the classes and education and contacts and supports. Once you become guardian the state takes their hands off anything and so we don’t qualify for any benefits. For Izzy we get no child support at all because the parents are just absent. But with Matt, his father does pay child support, $265 a month. Everything else we pay for. We have gone through our retirement money, our 401K savings, everything. It is all gone. If he lost his job today we would not be able to afford to live anywhere. Our savings is all gone.

They are not considering retirement. Having depleted their retirement investments, they will need to continue earning for the rest of their lives. They are trying to relocate his work closer to home, to at least put an end to his long commutes. Thus far, such efforts have not panned out. I Pay for Everything for Mark Like most custodial grandparents, Lizzy covers all of her grandson’s expenses. Lizzy, age 55, has custody of Mark, age 12, who has ADHD. Her household income was $43,000 last year but will be only $26,000 this year because she was laid off for part of the year. Making ends meet for both of them on this small income is challenging. As his custodian she covers all of his costs including food, clothing, sports, school supplies, and medical expenses. His mother does not work and does not contribute to his expenses. I pay for everything for Mark, I receive $124 a month from Social Security for his dad passing away, the survivors benefit. My daughter does not work, she is a felon on methadone.

Lizzy had a little savings that she used to weather the lay-off, but now she has nothing put away for her own old age. In fact now she has accumulated debt and has no idea how she will pay it off. She is extremely worried about their fiscal security. She has pulmonary vascular disease and at the time of the interview, she and Mark had been uninsured for several months. Though some of the time they have Medicaid, coverage had been inexplicably interrupted and she had been unable to regain coverage. Lacking insurance and money, they both often do without medical care. It’s Been a Big Impact. I Have No Income Many grandparents have become unemployed or retired and struggle to contribute to expenditures. In these cases, there is little to nothing set aside for their old age. Sparse resources may be generating conflict between the generations. Denise, age 55, has been unemployed since she lost her job 11 years ago. She lives with her only son and grandson and provides about 50 hours a week of care for her grandson. Nelson, age ten, has moderate autism and ADHD. Annual income for the entire household is less than $20,000. Nelson receives some disability benefits and is on Medicaid. They receive SNAP for groceries. When Denise was laid off from her job she received two settlements. She used that money to pay for the house, food,

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transportation, clothing, heat and virtually everything else for the three of them. But now that money is gone. Her son has a full-time job and Denise watches Nelson for free, yet they struggle to live on a single income. Their only car is not in good shape and does not handle well on the ice in winter. Denise would like to take Nelson on outings, even just to the park, but her son almost always has the car because he drives it to work six days a week. Now that he has the only income, her son is paying for most of their living expenses, including Denise’s new underwear and snow boots. At one point he argued with Denise and told her to get a job, so she did. However then he said she could not accept the position because he needed her to watch Nelson. That’s one reason I don’t have a job is because I’m afraid if I do, what will we do with Nelson? What would he, how would another babysitter take him? Would they understand his problem? In school, it might be latch key, maybe. And I don’t even know if we can trust him going to school.

Though her son wants her to bring in income, he objected to another job because it would tie up the car and cost them too much gas money. He had prodded her yet again to find work, but when she landed the second job he refused to let her drive his car to get to work. He wanted her to watch Nelson. And, then, another one, we were really strapped for money—the gas money-wise, it was a good paying job. And, he withdrew the car from me, that’s when I didn’t have a car and he did, and he withdrew the car from me so I couldn’t take that job. So, it’s been a big impact. I have no income.

They are on a tight budget and Denise is concerned that they will not have enough money for the year. The lack of income and resources fuels conflict between Denise and her son. She has virtually nothing set aside for her own old age. Her visions of someday travelling to the Grand Canyon and New York City have grown very dim. My Son Stole So Much from Us Fiscal problems mushroom when adult children are addicts who steal from their parents, and force expensive legal battles over custody. Donna, age 63, and her husband have adopted two of their grandchildren: Tony, age 11, who has ADHD, and Sally, age ten, who has adjustment disorder and ADHD. With an annual household income of about $190,000, including private pension and Social Security benefits, Donna feels that they are comfortable financially. But she retired early to care for the adopted grandchildren, and Donna and her husband cover all of their expenses now. Thus, she is worried about whether they will have enough in the future. I worked as a medical social worker for years; I worked for four years after they were placed with me. Then it became too stressful for me to work with these two kids that I became retired. I had that option because my husband makes enough money to support us.

In addition to losing her personal income when she retired early, Donna lost money when her son stole from them. They also lost money when Donna and her husband waged a legal battle to gain custody of the grandchildren and, eventually, to adopt them. They fought another expensive legal battle, which they won, with their insurance company.

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My son stole so much from us. It absolutely adds extra stress on my marriage, but we are a committed team. But somebody has to work. My husband is working full-time and it delayed his retirement goals and it impacted our financial situation. In just legal bills alone- $12,000 to $13,000- and then because we had (some assets) they took away our Medicaid leaving us high and dry. Since they weren’t yet adopted my husband’s insurance wouldn’t take in the kids so we were forced to get private insurance at a great cost. We fought his insurance company about this case and once they were legally adopted the company finally changed their policy so we paved the way for other people in our situation.

They fought yet another legal battle, which they lost, trying to gain access to state Medicaid benefits. Their income is too high to qualify for most state programs. They wish they were eligible. Donna waged yet another legal battle, this time with the state to secure daycare vouchers, but did not win. If I am entitled to a benefit and I am denied it because some social worker thinks I am going to use the system, I am going to fight it. I think grandparents, when they take kids from state custody, deserve daycare vouchers. They deserve clothing vouchers. It should not be contingent on judgement, I am entitled to these services and they should be getting them. I knew daycare vouchers were based on income eligibility but my world turned upside down when I got those kids.

Donna fights these legal battles not just for her family but for all of the families who are in similar situations. She uses the courts to try to change the rules and policies so that there are more supports for grandparents caring for grandchildren with disabilities. Hiring lawyers, advocating, and waging court battles diverts time and money from caring for her grandchildren. She is determined to improve the situation for her family and others. I deserved those vouchers and I was not getting them. I feel that there are so many grandparents who are hurt financially so they should be given a stipend and they should be given everything that they need to help them. I just wanted the daycare vouchers. There are more grandparents raising grandchildren that are economically disadvantaged and they suffer greatly. I know how privileged and lucky we were to be able to hire attorneys and beat the system; but so many people can’t do that.

Even though Donna and her husband are comfortable financially, she still worries about the future. She is also hoping that her husband can retire soon. If I won the lottery, I think my husband would probably retire. He is ready and that would allow him to do so. We would put away money for their college and put money for their weddings, and their expenditures. Then we would just enjoy life as is, and work as a team. We would not stop caring for them; there is no place else to go. I am their permanent plan and that is for sure a no.

Financial Contributions and Considerations Grandparenting can be expensive. It often means more money going out and less money coming in. Grandparents tend to spend a great deal on their grandchildren. They also tend to forego wages to care for their grandchildren. When grandchildren have disabilities, the need for spending, and for care, are often heightened. The

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grandparents we interviewed are spending and foregoing wages at a wide variety of levels. In some cases, there are few financial implications because families did not need financial assistance from grandparents or grandparents could easily afford their contributions. More often, however, there are substantial financial implications. As cumulative inequality theory suggests, grandparents with less income, assets, education, and legal expertise often face more struggles. Many families rely on SSI, Medicaid, and SNAP, and the importance, and the precarity, of those programs is evident in their comments. Many household economies rely heavily on these benefits yet benefits are often inexplicably interrupted or decreased, requiring a great deal of administrative effort. The financial implications are more serious when grandparents reduce work hours, change jobs, retire early, or move to new locations to provide care. The financial implications are most serious when grandparents become legal guardians and are required to cover nearly all living and medical expenses. Many of the grandparents we interviewed are becoming increasingly financially insecure and are concerned about their longterm financial security. Some are taking on substantial new debts. Some are delaying retirement, many are foregoing travel plans, and, as we shall see in greater detail in later chapters, some are going without needed medical care.

Notes 1. Amorim (2019), Yancura et al. (2019), Findler (2016), Hillman et al. (2016), Harrington Meyer (2014), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Yorgason et al. (2011), Conway et al. (2010), Falk (2010) and Tootelian and Varshney (2010). 2. Amorim (2019), Carr (2019), Yancura et al. (2019), Hayslip and Blumenthal (2016), Noy and Findler (2016), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Luo et al. (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Tootelian and Varshney (2010), Hayslip and Kaminski (2005), Goodman and Silverstein (2002) and Kelley et al. (1997). 3. Amorim (2019), Yancura et al. (2019), Findler (2016), Harrington Meyer (2014), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Tootelian and Varshney (2010) and NAC and AARP (2009). 4. Harrington Meyer (2014). 5. Hillman et al. (2016). 6. Amorim (2019), Carr (2019), Yancura et al. (2019), Hayslip and Blumenthal (2016), Hillman et al. (2016), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Folbre (2012), Glenn (2012), Luo et al. (2012), Yorgason et al. (2011), Conway et al. (2010), Falk (2010), Lee and Gardner (2010), Tootelian and Varshney (2010), Gladstone et al. (2009), Hillman (2007), Hayslip and Kaminski (2005), Waldrop and Weber (2005), Goodman and Silverstein (2002), Kelley et al. (1997) and Ashton (1996). 7. Luo et al. (2012) and Hughes et al. (2007). 8. U.S. Bureau of Labor Statistics (2019). 9. Harrington Meyer (2012), NACCRRA (2008) and Pavalko and Henderson (2006). 10. Harrington Meyer (2014).

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11. Amorim (2019), Yancura et al. (2019), Bailey et al. (2013), Padilla-Frausto and Wallace (2013), Folbre (2012), Glenn (2012), Harrington Meyer (2012), Yorgason et al. (2011), Aumann et al. (2010), Conway et al. (2010), Falk (2010), Tootelian and Varshney (2010), Neal and Hammer (2009), Rubin and White-Means (2009), NACCRRA (2008), Bittman et al. (2007), Heitmueller and Inglis (2007), Wang and Marcotte (2007), Brody (2006), Pavalko and Henderson (2006), Wakabayashi and Donato (2006), Carmichael and Charles (2003), Stoller and Martin (2001) and Cantor and Little (1985). 12. The U.S. Congress Joint Economic Committee (2012). 13. Kochhar (2012) and Kochhar et al. (2011).

Chapter 9

Managing Adult Children

When grandparents are providing intensive care, sometimes for many hours per day and many days per week, it stands to reason that grandparents and parents may have conflicting ideas about parenting. When we asked, some grandparents said they face very little conflict either because all generations have the same parenting style, the grandparents are doing as their adult children instruct, or, as custodial grandparents they are in fact the only parents. In these cases, one parenting style prevails and conflict is minimal. Others have clashing parenting styles that generate a great deal of conflict and, at times, lead to substantial arguments. Most worrisome, as parents and grandparents manage conflicting parenting styles, grandchildren are sometimes caught in the middle. Moreover, their other adult children may have opinions about parenting styles, how much care grandparents should provide, and whether they are getting their fair share. Indeed, some families face sibling rivalry among the adult children. Sometimes sibling rivalry is caused by disapproval, the feeling that one adult child is not sufficiently parenting their own children and taking advantage of grandparental supports. Other times, it is caused by jealousy, the feeling that one adult child is receiving too much assistance while another is not receiving enough help from grandparents. Managing adult children, with regard to parenting styles and sibling rivalry, is an extra set of responsibilities that many grandparents must wrestle with when they care for grandchildren with disabilities.

The Challenges of Managing Adult Children The opportunities for conflict between the generations are numerous whenever grandparents and parents are working together to provide care for grandchildren. This may be particularly true when grandchildren have disabilities and there is disagreement about the diagnoses and treatments, more extensive care is needed, or competing demands raise complaints about equity. A few small-scale studies have © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_9

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focused on parents’ perceptions of conflict.1 In general, conflict arises when grandparents criticize their adult children’s parenting skills.2 Qualitative interviews of 29 grandparents found that some grandparents’ interfering practices, such as offering unsolicited advice and criticizing parenting behaviors are factors that contribute to conflict with their adult children.3 When grandparents hold strong opinions about therapeutic and medical interventions of their grandchildren with disabilities, such as the belief that further evaluation or certain treatments should be implemented, that may also engender conflicts with adult children.4 Additionally, when the adult children have addictions, or are incompetent or neglectful parents, grandparents find themselves in custody battles over grandchildren with disabilities. During and after the custody process, adult children might be disgruntled by grandparents’ interference and intrusion, particularly in cases when the grandparents gain custody of the grandchildren. Relationships with the grandchildren’s parents become difficult as the grandparents’ supportive role shifts to an authoritarian and caregiving role.5 There is relatively little research on adult sibling rivalry and how that might impact grandparenting of children with disabilities.6 Other adult children may have opinions about how their parents care for their grandchildren with disabilities, how extensive of care they should provide, and whether they are getting their fair share of their parents’ availability and resources. One study found that when parental affection and attention differed among siblings, the impact was negative and continued later in life.7 In a qualitative study, grandparents reported how other members of their families often expected that equal amounts of attention and time should be given to all children and grandchildren regardless of their needs.8 One grandmother of a grandchild with a disability stated that she needed to justify her actions to her other two daughters because they were keeping records on how much time she spent with the family with the grandchild with a disability. For some of the grandparents we interviewed, managing conflicting parenting styles, and adult sibling rivalry, proved to be challenging.

Managing Similar Parenting Styles Even when parenting styles are similar, there is plenty to manage. Grandparents used a variety of methods to avoid conflict including doing exactly as the parents instructed, negotiating small exceptions, creating better systems of communication, and enforcing their rules only at their own homes. Alternately, when grandparents are custodial, and in fact are acting as parents, there may be less conflict because the parents are not parenting at all. In these cases, there is relatively little conflict over parenting styles.

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I Set the Expectation That They Will Behave with My Own Kids and Now My Daughter Does with Hers Many grandparents find that their adult children are parenting the way they were parented. There is little conflict because both generations are on the same page. Ina says they all have the same expectations for good behavior. Ina, age 46, cares for Ray, age three, who has Down syndrome. She is unable to watch her grandchildren on her own since a surgery left her partially paralyzed, but she and her husband of 27 years watch the kids together several times a week. She says she and her daughter, though not necessarily Ina’s husband, are similarly strict with the children and it shows in their behavior. My daughter and I are definitely similar, I was strict with her and she is super strict with Ray. I’m a little less strict because I am grandma. But my husband’s more of the fun guy. But they are super good kids, other kids their ages throw tantrums and they just do not. They don’t get everything they want, they just act well. I set the expectation that they will behave with my own kids and now my daughter does with hers. And they behave so well.

Our Parenting Styles Are Pretty Much Similar, We Don’t Have a Lot of Tensions, We Don’t Have Disagreements Kelly avoids conflict with her adult children by parenting the same way they do. Kelly, age 72, cares for her granddaughter, Maya who has cerebral palsy. She is comfortable with discipline because she and the parents have similar views and techniques. As a grandparent, you don’t have the same responsibility. We have always been there for our kids and grandkids. Oh we discipline them if they are here and they do something wrong, we will take care of it. We wouldn’t wait for the parents to take care of it. Our parenting styles are pretty much similar, we don’t have a lot of tensions we don’t have disagreements. We are in the same page.

I Am in Awe of Her Some grandparents believe their adult children are actually more effective parents and are happy to follow their lead. Bree, age 76, works part-time and lives just 15 minutes from her granddaughter Ava, age 13, who has Down syndrome. She says her daughter is the better parent and she is learning from her how best to care for all of the grandchildren, particularly Ava. My daughter is infinitely more patient and I have learned from her not to jump to bribery early on. She stresses positive behavior. She is better, more patient. I was brought up with a very black and white, and if something was wrong then it was wrong. I was more patient with my daughter growing up, and now she is even more patient than me with getting things around to where they should be. I am in awe of her.

I Follow Their Lead Especially with Paul, They Know What Is Important Many grandparents avoid any conflict by doing exactly as their adult children wish. Rae, age 61, provides a lot of care for all of her grandchildren, and particularly for her three year-old grandson Paul, who has Down syndrome and immune deficiency. She says she and her daughter and son-in-law work well together; they have become experts on Paul’s medical conditions and she adheres to the schedule they have created.

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I try really hard to follow what they do. I feel that is important to let them parent and be there for support. She knows she can come to me for suggestions. With Paul his medical problems take over from his care. My daughter has such a handle on it all she could probably pass a nursing degree without setting foot in a classroom. I follow their lead especially with Paul, they know what is important. We talk a lot. When I’m there we play and my daughter is very comfortable with me being with him. She is not like some mothers, always saying you have to do this or that. But he is on quite a schedule for feeding. We don’t have a lot of wiggle room. Because of everything he has gone through, we are set to a schedule.

Our Philosophy Is That We Obey the Rules That the Parents Set Similarly, Martin is one of many grandparents who avoid parenting conflicts by doing precisely what the parents say, however much they might disagree. Martin, age 64, says three of his grandchildren have Asperger’s, one has bi-polar disorder, and four year-old Lara has Down syndrome. He has a lot of experience juggling parental preferences and grandchildren’s needs. Each summer Martin and his wife spend two weeks caring for Lara. He says there are no disagreements about parenting because he and his wife make a point to follow parental rules. Our philosophy is that we obey the rules that the parents set. So, if the parents don’t allow it, we don’t allow it. So, I’d say it reflects what the parents do. If they want to have prayer night, we have prayer night. If the parents don’t allow the child to have candy, we don’t give them candy. You know, whatever the parents set. I have a daughter that is a new mother, and now I look in hindsight with my glasses of experience, and I would do things different, but that’s because I’m 64 and she’s in her 30s. I have a lot more experience, but no disagreements.

If She Wants This Done, That’s What I’m Doing Some grandparents avoid conflict by following parental directions but offer up advice whenever the moment seems right. Connie, age 57, has three adult children who were diagnosed with disabilities. She brings a lot of experience to the table when she cares for Andy, who is two and one-half and diagnosed with cerebral palsy. Andy and his mother live with Connie and she cares for him at least 50 hours a week. She says that his mother is his parent and she is not. I’m not his parent; his mama is his parent. And, that what she says, goes. So, if she wants this done, that’s what I’m doing. . .She turns to me for a lot of advice on things to do with Andy, as far as, because I tend to read up on a lot of stuff.

She does as her daughter wishes, though she often researches new equipment or medical devices to see if they might be appropriate for Andy. She says their parenting styles are very similar. For example, the specialty chair that we’re looking into, she knew nothing about it, and I saw it on Facebook, and I thought, “This would be great for Andy.” So, I asked his PT about it, so she gave me the information about it, and told me where to go, where to go to look it up. And, I went to her and said “What do you think about this idea for Andy?” . . .I think she takes into consideration that I have looked into stuff and things like that. I feel like I’m not over stepping my boundaries as a grandparent. I never want to do that because he’s not my child. She’s the one that’s ultimately responsible for him, not me. Although, I’m willing to help as much as I can.

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I Still Demand from Her the Same Things I Demanded from My Own Children When grandparents use the same parenting styles that they used with their own children, often there is little conflict. Everyone seems to know what is expected. Maureen, age 76, spends a great deal of time with her granddaughter, Madge, age 20, who has autism. When Maureen was asked whether her grandparenting style is different from her parenting style or if there are conflicts with her adult children, she replied, Not really. I enjoy it more because the responsibilities are not mine but I still demand from her the same things I demanded from my own children. I demand that she helps out. I demand respect.

I Don’t Like to Meddle in Their Affairs Some grandparents prefer to leave discipline to the parents, especially as the grandchildren are getting older. David, age 75, uses the same laissez-faire approach with his grandson Bill, who is 16 and has cerebral palsy, that he uses with the other grandchildren. He avoids disciplining them and meddling in parenting decisions. When they were younger. Not now. I might give them advice but I let their mom and dad handle that. I don’t like to meddle in their affairs. If they ask for advice, I help.

I am Not There All the Time and So I Can Stay Even Tempered Sometimes grandparents and parents have the same philosophy but, because they have more experience and are not there as much, grandparents might be better able to implement the agreed upon techniques. For example, Betty says she and her daughter are both committed to being even tempered but sometimes her daughter loses her calm. At 63, Betty is very thoughtful and purposeful about how she grandparents five year-old Carl, who has Williams syndrome. I have made an intentional effort to always remain calm and show affection, never tease him or put him down. But I also hold him accountable. I don’t let him get by with things because he has a problem. I have rules and I expect him to follow them and if he does not, I take him to the bedroom and talk to him. But I always keep an even temper.

In the early years, Carl’s behavior precluded most restaurants, movies, and other public spaces. Not anymore. As he ages, Betty finds it easier to grandparent and easier to be out and about. It is getting better. Initially he was a very messy eater, and it was difficult to take him to a restaurant. He would want to get up and move around, and so did his brother. He tended to be noisy at a movie. A movie was too long and too much sitting. But now there is not anyplace we would be hesitant to take him that we would not be hesitant to take any other wiggly, messy, talkative child either.

We asked whether Betty feels that she and her daughter parent similarly and she said yes and no. She feels they are both committed to being even tempered, but perhaps because she is not with the boys as much, Betty is the stricter disciplinarian. We are relatively similar, my daughter is with them all the time and she is fairly even tempered, but sometimes they can get her goat. I am not there all the time and so I can stay even tempered. She is more lax with both children than I would be, less discipline, less

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structure, then I would have. I’m not sure how much discipline and structure I had as a young single mom with a job. But as I’m getting older I’m more strict. I want more discipline.

I Have Permission to Rock Him to Sleep Some grandparents agree on most things but then negotiate small exceptions. For example, when parents outlaw TV, some grandparents are able to negotiate small amounts of educational programming. The rule Jane simply could not abide was that she leave her grandson to cry himself to sleep. She was granted permission to rock. Jane, age 50, cares for her only grandchild, Jay, who is 17 months old and has Down syndrome. She works full-time and, because she lives eight hours away, sees Jay about one weekend a month and does not want to spend it listening to him cry. She and her daughter are generally in agreement about how best to raise Jay, though Jane occasionally negotiates some of her own preferences. I let him watch little music videos, short ones because his mother is very much against it. Five little monkeys jumping on the bed. I rock him to sleep when I have him. My daughter thinks he needs to learn to put himself to sleep. But I have permission to rock him to sleep. I will take for a walk and let him calm down and then sleep.

Jane has an MA in nursing, and her daughter is a special education and early childhood teacher. Between them they have a lot of expertise. But it is clear to Jane that the grandma must respect the mother’s wishes. She does not want to jeopardize her relationship with Jay, yet she plays a bit loose with the rules. She does not believe they should have TV or video until age two. When my children were young, I would let them watch some Sesame street, educational TV, and they were always outside playing. But my daughter does not believe in TV. She will come in when we have a video on and I will say, oh he is not really watching that, he is not looking at it, it is just on. She will lay him down for bed and he will cry and it breaks my heart. I would hold him a little more. I respect her wishes, I try to respect that this is how she feels. I think things, even though I won’t tell her. I don’t want distance between my daughter and her husband and me. I will tell my husband that she should do this or that more often. But I don’t tell her. I don’t want to put any barrier there and lose my grandson. I keep it respectful.

They Have to Follow the Rules at Grandma’s House Some grandparents are stricter than their adult children but they avoid conflict by imposing their rules only at their own homes. Heidi, age 59, works over 50 hours a week and cares for her four year-old grandson, Max, who has Down syndrome. She says while their parenting styles are similar, and not a source of conflict, Heidi is firmer than her daughter. My daughter is a lot more calm, I was strict, she is not as strict. They have to follow the rules at grandma’s house. My granddaughter tells me I have so many rules. I make them mind, and if they don’t do as they are told they have to sit in time out.

Their Parents Are Ok with It Some grandparents are less strict than the parents. Dorothy only enforces a few rules. Dorothy, age 59, lives with a daughter and two grandchildren and the oldest one, Johnny, who is two has autism. Dorothy proudly discusses how she chooses to spoil her grandchildren, including Johnny.

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I’m more lenient with the grandchildren, which is more normal because they are not your responsibility, really. But I am not a total spoiling grandmother. I do enforce rules. That’s my style, that’s who I am. I’m not overly strict and I tell them to do something. I don’t want to repeat myself. Their parents are ok with it. That’s something we never argue about. Ever. They are all amazing.

It Was a Communication Downfall Occasionally it takes grandparents and parents a bit of time to get into a good rhythm. Some notice that what appear to be conflicts are actually the result of poor communication. Arlene and her daughter realized that their transitions were hurried and they often failed to tell each other key pieces of information. The answer? A communication binder. Arlene, age 53, quit her job to care for Carl, age eight, who has cerebral palsy. Her daughter and two children live with Arlene and her husband and it can be tense with all of them living under one roof. Arlene’s main emphasis is to improve their communication. We try to, you know, stay and communicate well, so it stays the same. It was a process, believe me. It was just confusing because I would say something to the kids like they could stay up and watch a movie or something and she’d get home and say that they needed to go to bed because they have to leave early the next morning or something. It was a communication downfall because, but you know it was just a process because I was involved so much and at the same time, she wanted her independence with them. . . Just sit down and communicate more.

Now they all write extensive notes in the binder, passing vital information about care, preferences, and scheduling to each other. We have a communication binder, and even if we don’t see each other all that much, we communicate through that so we know what’s going on. Yeah, it’s just a notebook, and it’s everything from how he ate that day, and his demeanor that day. And, if he did anything special or if he talked about anything special that, he doesn’t talk real well, so sometimes we kind of get stuck on what he’s trying to say. So just give her a heads up about what was talked about if he brought something up, or, you know? That’s on days like when she’d come home, and I have to leave right away. If he had a bowel movement or you know what he ate and how much, stuff like that. I’d say over a year. It helps a lot!

We Don’t Have Tensions, She Just Bows to Me Sometimes there is no conflict because the parents are not parenting at all. When grandparents have legal custody, and are therefore doing all the parenting, there may be less conflict. Elsie, age 62 is the sole legal guardian of Curt, age 11, who has ADHD and learning disabilities. Though she is the grandmother, Elsie is the primary parent, in charge of discipline and arranging any parental visits. Curt’s mother struggles with addiction and he sees her only occasionally. Even during their visits, she does not parent him. We don’t have tensions, she just bows to me. She feels really uncomfortable when we are together and I have to say no to him, and she would never say no to him. So that makes her upset. She mostly agrees with my parenting. Right now his birth mother and father are together again, and they call a few times a week and they see him face-to-face, they would say monthly but it is more like six times a year. They were just here for Thanksgiving. For Christmas we have been talking about us coming to them, we will probably see them one

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way or another. I try to make sure that at least on holidays but I have to make the arrangements; that is always left to me.

She Is Not Parenting Him at All. I Am His Parent Similarly, Lizzy’s daughter is not parenting, therefore there is little conflict about how best to parent. Lizzy, age 55, is custodian of her oldest grandson, Mark, who is 12 and has ADHD. Mark’s mom has custody of her youngest child but has not had custody of Mark since he was two months old. Lizzy is his only parent and in fact a few years ago he asked if he could stop calling her grandma and call her mom. She said it was important for him to choose, and he calls her mom. He sees his mother rarely and she does not parent him during those visits. His mom acts more like she is his sister. They don’t really call and talk or ask about each other. She will sometimes send a card, but she doesn’t even ask to talk with him. They are more like brother and sister. We have only gone there four times since he was four years old, and she was on drugs some of those times. Last year was good. But she is not parenting him at all. I am his parent.

At times her daughter has been very resentful that Lizzy has custody of Mark, but at other times she is appreciative. She does appreciate somewhat now. She used to say I was a kidnapper. But now she says thanks. She used to say thanks for helping with him, but now she says thanks for raising him. She is thankful. There is not tension because she is not his mom, she acts like his sister.

Managing Conflicting Parenting Styles Some families face a great deal more conflict about how to parent, and often that conflict revolves around behaviors linked to the disabilities. Tensions escalate as either parents or grandparents are stricter, set higher expectations, or insist on more proactive therapeutic care. When tempers flare, grandchildren may be caught in the middle. I’m Probably a Little More Lenient Sometimes grandparents are not strict enough and their adult children have to admonish them to stick to the routine. Tessa, age 61, cares for her only grandchild, Leila, a six year-old Black child with Down syndrome. They share a house, with Tessa living upstairs and Leila and her mother paying rent to live downstairs. Tessa says she and her daughter and granddaughter all get along really well, eating dinner together nearly every night, and going on frequent family outings. But sometimes her daughter has to remind grandma to be a bit more stringent. I’m probably a little more lenient. My daughter has sat me down and explained that we both have to be on the same page, be consistent. It does not help Leila if we are doing different things. Everyone has to be consistent so she can learn. It is not helpful if I let her get away with something and then downstairs with her mom she gets in trouble for it. The hardest thing for me is to not react. I have read some books about how to do that and my daughter has helped me a lot. I think we are pretty much on the same keel. As a grandparent

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I’m easier. I already brought up my kids, I can give her back to her mother. That’s true for most grandparents, you can give them back.

We Feel That We Must Have Been Stricter Some grandparents who are more firm find that they can minimize conflict by adapting their style and households. This may mean hiding the valuables before grandchildren arrive. Linda, age 61, cares for her grandson George, age five, who has mild Down syndrome, and his brother at her home several times per week. While she feels her daughter is a strong advocate for her son, she feels that the discipline might be a bit lax. Rather than insisting on her own stricter rules, she hides the breakables before the boys arrive. We feel that we must have been stricter. The boys can climb on furniture at their house. The parents don’t seem to notice it. It’s ok to sit on end tables. Sit on kitchen counters. The boys are used to climbing on there, laying across it. At our house they think the same thing is true, and that is the hardest. I do not remember our children ever pretending that furniture was the floor. At our house we ask them to get down. At times I feel like that is all we are doing. We put certain things up when they come over, because we know they will go toward them and they are not for children.

There Was Tension with the Parents but I Decided Not to Interfere as Much When parenting styles conflict, some grandparents decide to refrain from offering advice to avoid conflict. Hanna, age 71, cares for her oldest grandson, Danny, age 19, who has autism. Hanna was raised in a middle-eastern culture with a lot of structures and restrictions. When she was raising her daughter in an American culture, she found that she did not need to be as strict. She says her daughter was very independent and required very little supervision. When Danny arrived, he required a lot of supervision, and Hanna had to change her parenting style again. She disagreed often with his parents. To reduce the number of conflicts, she decided to say less about parenting. There was tension with the parents but I decided not to interfere as much. I would recommend, I would make suggestions. If they take it they take it, if they don’t they don’t.

I Tell Her to Stop; It’s Not Okay Sometimes grandparents are more stringent and have higher expectations than parents about how grandchildren should behave. This can lead to substantial conflict. For example, Stella is aware that her granddaughter’s tendency to dance endlessly is linked to her disabilities, but she is also aware that her granddaughter can, and will, stop dancing if someone tells her to stop. Stella is a 66 year-old white, divorced, retired mother of one and grandmother of two. She lives just ten minutes from her 14 year-old grandson, Chase, who she says is diagnosed with social anxiety and being anti-social, and her eight year-old granddaughter Karla, who is diagnosed with audio processing disorder, ADHD, anxiety, and sensory processing disorder. Stella says she is stricter than Karla’s mom or maternal grandmother, particularly when they are out in public. Karla’s been dancing since she climbed out of her crib, and she gets started and she doesn’t stop. I mean, you have to stop her in the store. Flipping through stores and everything. That’s how her ADHD is—Off the wall! I mean, you know, it’s inappropriate. And, the store people

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get a little crazy, depending where you’re at. Them thinking they’re going to have a lawsuit. . .For me, it’s inappropriate behavior. You’re in a store or a restaurant or whatever. I tell her to stop; it’s not okay; you’re going to crash into somebody. Or, these store people, somebody might say something to her. She listens, typically, but she doesn’t like it! I’m the bad grandmother. The other grandmother gives into e—ver---y---thing, and I don’t.

When Stella tells Karla to stop dancing at the store, Karla quickly counters that she is permitted to do so with her mom or grandmother. For Stella it is an uphill battle that often culminates with her granddaughter lashing out at her verbally. I usually confront her with the fact, she’s not listening and her listening ears are not on. “Well, I can do it with mom.” Well, you’re not with mom, and it’s not okay. I attempt to teach them, but it torques them off, pisses them, well mostly her off when I say no. She doesn’t like it. She is verbally abusive.

Stella says she tries to limit her discipline because she is still trying to build a relationship with Karla; she was only permitted, by the courts, to start seeing Karla since she was five and a half. But she still feels it is important to say no to her. She says her parents and maternal grandmother do not say no. Stella thinks Karla is too young to have a cell phone. Stella also thinks Karla is too young to take a tablet to bed every night because she uses it instead of getting much-needed sleep. Stella has a limited budget and cannot buy things Karla wants. Her household income, which is comprised of Social Security and a private pension, is less than $40,000 a year. She says she has less than she needs and is concerned about her own old age financial security. She cannot afford to pay for things for Karla, but more importantly she is worried that Karla has already learned to manipulate the other adults in her life. No, I’m going to say, when it comes to material stuff. . . I mean, she already has a phone, and I think she shouldn’t. But, you know, they’re just used to getting everything they want, but you wouldn’t know that in a way. You know? They’re not horrendously bratty children, but at the same token, the concept of the word no is real difficult for them. More so for Karla because she’s younger and she just doesn’t get it. . .It could be related to her disability. Because, she figured out very young that if she cries, she could get her way. . .she can be very manipulative already. . .

Her concerns for Chase are very different. He does not ask for much, and handles the word no just fine. Her concern for him is that he is so withdrawn, focused entirely on gaming rather than social interaction. She says he has a hard time making and keeping friends, and does not attend to his school work. He has become increasingly introverted, in part because of his age and in part because his parents have a tense relationship. His parents don’t attempt to reach him, but she does. He’s kind of maintenance free. You know, he’s one of those gamers so he just kind of chills back, and does all that. He’s remotely not interested in a whole lot of anything. He used to be, but he’s not. He’s at 14. Very much a loner. Sad, sad in a lot of ways. Because he could really use more interaction. And, you can see the introversion for him, you know what I mean. . .Motivating him—it’s not an easy task. He just as soon be in the headphones, however they do that gamey thing with six other kids or however they do that Nintendo. I don’t know! I don’t get it! Trying to talk to him with headphones on doesn’t work. That whole system that they have.

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The bottom line is that Stella is more stringent and the grandchildren do not like it. She has a lot more rules, generally for the sake of safety. I think it’s very different. I have rules, and that’s how they are. And, some of them are not conducive to what they are used to on a daily basis. Like, screwing around in the back seat of a car. That kind of noise just drives me over the wall, and it’s not a place for it. It’s distracting. And dangerous which is what I try to explain.

That said, she gleefully violates one of the parental rules; the children are not to eat sugar. I still sugar them up and send them home. You’ve gotta give them some kind of treat.

There is clearly a lot of tension between the parents and grandparents in this situation and only some of it revolves around how to respond to behaviors linked to the disabilities. Should the expectations be higher or lower? Should there be more or fewer interventions? Should grandma sugar them up and send them home? Don’t Tell Me the Routine. I’m the One That Started the Routine When tensions flare, some grandparents and parents argue in front of the grandchildren about how best to parent. People stop speaking to each other, doors are slammed, grandchildren are compelled to choose sides. In Karen’s case, she feels her daughter is too strict and is lobbying for her to give her daughter more warnings and fewer punishments. Karen, age 40, has two children and two grandchildren with disabilities. Pam, age two, has intellectual disability, epilepsy, and sensory processing disorder. Pam and her mother live with Karen, though Karen says she provides about 90% of the care for Pam. Pam’s mother is mainly focused on caring for her new son, who also has disabilities. Karen and her daughter have different parenting styles and they argue about parenting quite frequently. My daughter is more like I used to be when I first had kids. The fact that it’s everything has to be ordered. My daughter has OCD. Everything has to be completely one way or the other. She believes in her parenting skills, and it’s automatic discipline. You get in the corner. You get in the time-out chair. For the first time! Me? I’m a little more relaxed. There wasn’t nothing going to hurt them. There isn’t nothing that’s going to give me heart failure. I get by telling them, “No, you don’t do this again.” Then, if they do it again, I give chances where my daughter don’t.

When her daughter is disciplining Pam, Karen often intervenes to tell her how she thinks she should be handling the situation. We go at it. Not actually go at it, but you know, when she is getting on to her for doing something for the first time, and she’s making her sit on the couch or something—you have to explain to her what she did. You have to tell her what she did. She don’t know she was doing wrong. She’s like, “That’s why you put them in time out, then they won’t do it again.” No you explain it. She’s like, “Well, she’s my kid.” Nope! And, of course, Pam gets down and runs to me. And I’ll turn the TV on. My daughter goes to her room, me and Pam go to my room. . .We may not speak to each other for like the rest of the day, but by dinner time we’re fine. She’ll come in here and be like, “Mama it’s time for dinner.” “Mama, what are you cooking for dinner?” “Mama it’s Pam’s medicine time.” I already know this. I do it all the time. Don’t tell me the routine. I’m the one that started the routine. And, it’s just because we’re just hard-headed and stubborn. She got that from me.

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Even though Karen sees herself in her daughter’s stricter approach to discipline, she rejects it. And when her daughter tries to act like a parent, Karen rebukes her. Karen appears to be at least half correct when she says they are both hard-headed and stubborn. A Lot of Disagreements, Cussing in Front of Him Likewise, Irene and her daughter fight often, in front of her grandson, about parenting. One effect is that little Liam now swears routinely. Irene, age 73, has a daughter with a brain injury due to a car accident, and a four year-old grandson, Liam, with ADHD and autism. They both live with Irene. She says she and her daughter argue, often in front of Liam, about how to care for him. She doesn’t have a lot of parenting skills because her brain damage and stuff. But, he is hard to take care of because the extreme carrying on. . .I’m more loving, I talk to him more. She yells and screams at him. A lot of disagreements, cussing in front of him. Usually we have an argument.

He has learned to swear, and she threatens to wash his mouth out with soap but that has not discouraged the foul language. She says this is a great source of stress because she never knows when he might swear at school or in front of others. I Am Not Allowed to Take Her Anywhere Sometimes the animosity between grandparents and parents seems to move beyond parenting styles to encompass parenting objectives. Cindy, age 69, regularly cares for her granddaughter Sara, who is four and has autism. At the time of the interview Sara did not talk, was not potty trained, and did not seem to recognize Cindy. There is little agreement among the grandmothers and parents about what constitutes the best care. Moreover, the relationships are tense. It’s not clear why there is so much animosity between Cindy and her daughter-in-law, but it might be linked to Cindy’s early refusal to be the full-time sitter. When Sara was born my daughter-in-law asked me to babysit full-time and I said no. I have a husband and I had a full-time job and a life. So instead her mother moved in and stayed with them and her mother is not happy about it. She is retired and does maintenance work with Sara but not much else. She goes home for six weeks at Christmas and again in the spring.

For reasons Cindy cannot understand, she is not permitted to drive Sara in the car even though the other grandmother does. So, their activities are somewhat limited. My daughter-in-law will not let me drive my granddaughter, I honestly do not know why. So someone else drives her from special ed to their home and then I meet her there and I babysit her from 3:15-7 till her parents come home. . . My daughter-in-law is a difficult person. She is mean. I have offered to exchange the car so I have the right car seat but she does not want that either. I am not permitted to give Sara a bath either. I’m considered a second class grandmother. I’m not given free reign like her own mother is. Her mother can drive Sara all over the place and bathe her, everything.

Despite these limitations, Cindy is a very hands-on grandmother, eager to provide any resources that will help Sara develop. There is little agreement among the grandmothers and parents about what constitutes the best care.

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When Sara gets home at 3 pm she has a snack and she will watch Daniel Tiger, she loves it, it is her whole world. I think she watches too much of it. I think it keeps her in her own little world. I let her watch one show and then turn it off and we play. She will be unhappy about that. I have read a lot about autism and the history, and I have read all of the current books. They talk about the importance of floor time. . . I try to play and engage. We rough house. I chase her. She loves it. I’m physically active with her. I talk to her. I put out toys and let her pick. She does not play with toys well at all. Often she does not pick one. I do a lot of rough housing and she loves that. Her other grandma weighs 300 pounds and cannot do that.

Cindy knows she made the right decision when she declined to be the full-time babysitter, but the impact of her decision seems to still weigh heavily on all of them. She describes her efforts to engage Sara, efforts not mimicked by the others. I feel guilty that I don’t baby sit her full-time but I just can’t do that, it is not good for me. We will then watch some more Daniel Tigers. She will point to the controller and that’s how she tells you what she wants. We play and then I will let her watch more. When I’m not there she gets very little interaction and stimulation.

Cindy wishes the others engaged Sara more, but is aware that it may be easier for her given that she is only with Sara occasionally. They let her eat meals in the kitchen alone. They just put out food and she sits there alone and eats. The other grandma reads and watches TV. She does not do much with Sara, she just does the basics. It is all very upsetting to me. My son and daughter-in-law are on their iPhones all the time. It’s hard to play with an autistic child when they don’t respond. It’s easier for me to persevere because I’m there for a limited time, but if I was there all the time, I might not persevere as much. I might give up too.

Cindy can only take Sara to the park or the zoo when the other grandmother or Sara’s mother drive. But she says her son and daughter-in-law take Sara out a lot. Cindy appreciates their efforts to provide opportunities for Sara. They treat her like a normal child, they take her to the Daniel Tiger park, and to shows, they take her out a lot. But I can’t because I am not permitted to drive her. I don’t know if she even knows she is looking at animals at the zoo but I give the kids credit for trying, and treating her like she is normal. They give her a birthday party every year, and they just had a Halloween party for her. But she does not really participate, she just wants to wander off, leave it, and get back to her own little world. But I give them credit for trying.

Her Father Is the Oldest and He Can Be a Little Rigid at Times Sometimes the disputes are about how much therapy or care grandchildren should receive. In all such cases, the grandparents we spoke to were advocating for more and were frustrated that the parents were choosing to do less. Mia, age 66, cares for all of her grandchildren, including Cally, age 13, who has mild Down syndrome. She says that the grandparents and the parents have similar styles of parenting but at the moment they are disagreeing about whether Cally is receiving enough speech therapy. Mia would like to augment the therapy received at school but her son feels it is sufficient. We are all pretty similar. Her father is the oldest and he can be a little rigid at times. I think she should be having more speech therapy, because what she gets at school is not much. She gets a lot of other therapy at school. She is pulled out for therapies, but they are not much.

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That might be our state, they do not have particularly good schools here. They offer more services for older people than children in schools

I Want to Treat Her as a Normal Child Disagreements about how to handle disabilities sometimes generate conflict between generations. Marina disagrees with her son and his wife about what the behavioral expectations should be for her granddaughter. She feels the bar should be set higher. Marina, age 60, cares for Carly, age two, who has Williams syndrome. She says her parenting style is quite a bit different than her son and daughter-in-law’s. Marina says that Carly’s disability should not be license to be a brat. I want to treat her as a normal child. Even though she has a disability, she is still a child, but that is not license to be a brat. Her parents have problems with her throwing food on the floor. At the end of the meal she throws it on the floor. I think that is part of Williams. But she does not do that at gramma’s. I take her out of the chair before she throws. I praise her when she does well. I take her out on a good note. My goal is to challenge her.

If she does throw the cup on the floor, Marina instructs Carly to pick it up and she can readily do so. But her son and daughter-in-law feel she is asking too much, given her disability. She is capable of learning and totally understands what you tell her. For example, she always flings her milk cup on the floor and now I put her on the floor and tell her to pick it up and she does, she is capable. I treat her like a normal child. My daughter-in-law treats her like she has a disability. . .She makes excuses for the child. For example, with the food going on the floor, rather than scolding her and telling her that is not acceptable, she allows her to do it. Maybe I open my mouth more than I should but I tell the mom that she cannot let Carly be a brat. My son understands but he does not want to rock the boat with his wife. It is difficult because it is not your child and not your responsibility to tell the parents how to raise their child. We all have to blend together to make it work.

Marina says there have been conflicts about many things over the years, particularly with her daughter-in-law. In the early years, the conflicts surrounded who should witness Carly’s first accomplishments. I had to learn to keep my mouth shut. Not tell what she grasped with me. Let her grasp it with mom.

Overtime, Carly’s parents have come to appreciate any developmental milestone, regardless of who is caring for her at the time it occurs. This has reduced the stress between the generations considerably. But now they want her to develop and they have gotten past wanting to be the first one to see it. . .Just recently, she is doing a rocking horse that plays music, and now she can make it rock herself. I have been working for a long time on forward and backward. And just the other day she got it. Now she can rock the horse by herself. And it was ok to show the parents and they were delighted, even though it happened with me.

Marina emphasizes challenging Carly, and moving her toward next steps. At one point Marina took away Carly’s bottle and moved her to a sippy cup. Marina feared the parents might be unhappy about her interventions, but in fact they were very pleased.

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I worried they might be unhappy I had taken away the bottle. But when they got home they were delighted. They want things to happen and they want gramma to do it. They don’t take time to it. Carly is not ready to potty train yet, but when she is. . .

My Daughter and I Are Totally Different: Night and Day Sometimes when grandparents and parents have different styles of discipline and housekeeping, grandchildren feel caught in the middle. Candi’s granddaughter occasionally calls and asks if she can move back in with Candi. Candi, age 61, cares for Aly, age 12, who is diagnosed with ADHD and asthma. Aly is now in a trial visit at her mothers, which Candi says is going well. Nonetheless, the differences in their parenting styles are stark. My daughter and I are totally different – night and day. I’m the more giving and easy going, my daughter is more hard core. My granddaughter has called and asked me to come home but I tell her this is not a punishment, we think it is time that you get to be with your mom. My daughter is very disciplined: this is the way it is going to be and you will do it this way. I have never been that way. I don’t enforce restrictions and I don’t like confrontations. My daughter is very that is enough, and you will do it.

Candi says she and her daughter are also very different when it comes to housekeeping and the grandchildren are well aware of the differences. I’m a fanatic about cleaning, my house has to be in order. I get up and the beds are made and her hair is done and her clothes are ironed and everything is in order. And we leave to go to school or work. My daughter, the clutter, she could care less if the bed is made and things are unkempt. I’m a little OCD and she is not. She does not iron anything.

If You’re Going to Ground Him, Ground Him. Tell Him the Reason Why and Get It Over with. Don’t Harp Sometimes grandparents try to follow parental instructions but find them too harsh and do not want to be complicit. Denise, age 55, is unemployed and lives with her only son and grandson. She provides about 50 hours a week of care for Nelson, age ten, who has autism and ADHD. She says she learned a long time ago not to sweat the small stuff, but that her son has not yet really learned that lesson. In their threegeneration household, her son is the boss, and she tries to follow his lead. He supersedes me when it comes to decision making especially regarding Nelson. If he has a discipline or grounding or limitation that he has put on Nelson, I do my best, I follow through with it. Sometimes, he doesn’t tell me exactly (what) he’s put the limitation on. Then he finds out and gets upset and you have to tell me what it is. I pretty much let my son take over with the care and whatever. The only hard part is when Nelson’s being disciplined or something and he usually gets disciplined for something that’s happened at school. And, my son will go on and on. I get mad at that. I’m not mad he’s disciplined, I’m mad about the approach he’s taking. If you’re going to ground him, ground him. Tell him the reason why and get it over with. Don’t harp. This is what you did, and that’s probably because of years of experience with that.

Denise is most disturbed by what she sees as harsh discipline when she can tell that her grandson does not understand what he did wrong and when the discipline never seems to end. Tell them what they did wrong, yell if you have to, discipline them, get it done and be over with it. Don’t continue it a couple hours later. Just, you’re done. With Nelson, you can’t ask

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the question why—why did you do this? Because he doesn’t understand the question. . .He’ll just give you a blank stare.

Denise tries to remember that she is not the mother, to remember to be the grandma. But sometimes the punishments are too severe for the behavior. I do try to—to go along with his discipline, I didn’t when he was younger because I thought they were excessive. For example my son would ground him from everything. It’s like, it’s not that severe. Ground him from the X-Box or ground him from the TV. Ground him from whatever. But, it’s gunna have to be pretty severe to ground him from everything. What are you supposed to do if you ground him from everything? He’s not a child that goes and plays with toys.

I Say Fewer Words, I Threaten a Lot Less. If I Say Something Is Going to Happen, It Does Sometimes grandparents feel the behavioral expectations of the parents are far too high, given the disabilities. Chris certainly feels this about her adult daughter. She also feels that regardless of whether there are disabilities, her daughter uses far too many words when she is disciplining. In fact, she also thinks her son-in-law and husband use more words than are necessary. Chris, age 67, cares for her two grandchildren, Wendy who is ten and diagnosed with anxiety disorder and has autism like symptoms, and Mark who is seven and diagnosed with ADHD and Oppositional Defiant Disorder (ODD). Chris says her career working with adults with disabilities, coupled with the fact that she is older and the grandmother and therefore not the mother, have made her prioritize and respond more calmly than her daughter is able to do. She often tries to get her daughter and son-in-law to learn the lessons she too had to learn as a mother. I tell my daughter, “You don’t want to break his spirit. You want a confident kid who behaves. You don’t want to make them feel like they are horrible people.” She tends to talk, talk, talk, talk, to him and I tell her, just say one word. She was here yesterday when they were supposed to do their homework and I had to say to her, stop talking. Just say one word. I had to learn that as a young parent. She would drop her coat on the floor and I would talk and talk about how important it is that she pick it up. But I learned to just say, “Coat.” That did the same thing. Much easier. My husband pointed out to me, nicely, that I talked too much. I learned to say just “coat” without making a big deal, and getting so frustrated. All the talking does not help, does not progress. Young parents have to learn this.

Relying on decades of experience in a career helping adults with disabilities, Chris feels she is well equipped to respond to her grandchildren’s issues. She often sees how her daughter and son-in-law could have handled something better. While she will frequently offer advice to her daughter, she does so only occasionally with her son-in-law because he seems less receptive. My expectation for the kids is different. My daughter and son-in-law’s expectations for the kids are so high, they think their children should be little adults. I point out that you are insisting that Mark be under control, but you aren’t. How can you expect a seven year-old to be. You are quick to anger, as a mom. And I think my son-in-law incites wrath. . .He is not open to parenting suggestions; he is not open to that. My daughter is reasonably open. My son-in-law says, “I read it in a book, don’t tell me I’m doing it wrong.” To talk to my daughter, I wait till it’s over. Then I will tell her that I would have handled that differently. The other day, I waited for a half hour, before I talked to her.

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Chris brings a lot of experience, both with parenting and with people with disabilities, to the table and she is eager to help her daughter manage what is clearly a stressful situation for them all. But she treads gently; she does not want to insult, just inform. I don’t want her to think I’m finding fault with her, I don’t want to be interfering too much. But as a parent, I want to say something that might help her. It’s hard. I always come out of it hoping that she is OK that I said something, I’m never quite sure. I don’t want to interfere. With my son-in-law, I will leave the room, when he goes off on one of his things, but I don’t say anything.

Similarly, Chris says her parenting style is also very different than her husband’s. Though she often offers him advice as well, he does not necessarily heed it. She frequently ends up running interference when situations escalate. I say fewer words, I threaten a lot less. If I say something is going to happen, it does. I am consistent. My husband has more issues with the kids and sometimes I feel that I’m referee between my husband and Mark. They butt heads. I don’t leave them alone together. It’s just not worth it.

Each of the four adults in this situation have different parenting objectives and styles. They recently clashed over a TV show. They are only allowed to watch TV on Fridays, and the other day they picked Mario Brothers. My daughter and son-in-law walked in and they were like, what is this, it’s such a silly, dumb show. They were so upset. But I asked Sarah, will it hurt them? Is silly and dumb ok? Is it ok to do this? I’m never sure. I’m very anxious. I take those things to heart. I often feel like, oh, I blew it. They were not happy with what we did. It’s harder than I thought it would be. I love the kids so much.

The longer they provide care, the more stressful it becomes for Chris. She is increasingly worried that they are not doing a good job. They also clashed when the kids were dirty after playing in the backyard. These moments weigh very heavily on Chris, fueling emotional distress. We are very concerned about whether we are doing a good job. They are not clear about whether we are doing a good job. The other day, my son-in-law came and the kids were dirty and he seemed mad. Something will happen and I will say, “I’m just glad you didn’t fire us.” My daughter says, “Oh mom, you are doing ok.” My son-in-law gets so irritated. And I’m very anxious, should I have changed them into other clothes? I let them play in the back yard dirt, they love it, but then they are dirty. So do you want me to not let them play in the dirt? They are not clear, what they want, if we are doing a good job.

All I’m Trying to Do Is Make Sure John’s Needs Are Taken Care Of Sometimes conflicts about parenting become particularly serious when grandparents feel that grandchildren with disabilities are not being cared for properly. In her case, Doris feels her grandson’s mother is neglecting even his most basic daily medical needs. Doris, age 55, care for John, age 11, who has atrophy of the brain, LennoxGastaut seizures, and visual and hearing impairments. Doris, who has MS, routinely assists with his feeding tube, ventilator, tracheotomy, and catheter. She says that while she never abuses him, John’s mother neglects him.

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I do believe she neglects him. When the nurse is not there, he’ll lay in bed all day long. He doesn’t get out of his bed, and that’s not good for him, and he needs to move. . . He has gotten a bed sore. . .And, he also needs to move his muscles so they don’t tighten. . .He needs to be up out of bed. He needs to be moved every so often. I mean, you’re talking about a child who can’t roll over on his own. You know, he can’t sit up on his own. He can’t speak for himself. Someone has to be his voice. John depends on somebody to do everything for him, everything. To be his advocate, and I think that if a parent’s not willing to do that 110%, then somebody needs to. Well, I think the problem lies with his mother.

Doris tells John’s parents if they are not going to attend to his medical needs, she will. She and John’s mother square off frequently about how much time John needs to spend up out of bed, how often he needs his catheter, how much stimulation is warranted. She is frustrated by the confrontations, but even more frustrated that John may not be getting the care he needs. Her preference would be to kidnap him and take care of his on her own. What happens is, I’m so strong willed with the fact that John deserves better than that. She gets very angry because if she’s not doing it, or John’s dad is not doing it, somebody needs to do it. As far as I’m concerned, if they’re not doing it, I will. John’s mom is very angry about that.

She is determined that John will receive the medical care and social stimulation he needs, but it puts her at odds with John’s mother, who clearly feels less is warranted. You know, it puts me between a rock and hard place because, I would be more than happy not to step in, but then you have to do it. You have to get him out of bed. You have to roll him every so many hours. You have to make sure his blood pressure is taken every four hours. You have to make sure he doesn’t need blood pressure medication. You have to cath him every four hours. If you don’t know how to, somebody has to. And that somebody would be me if his mom isn’t going to. . .She’s looking at me as a bad person, and it’s making her look like a bad parent. When all I’m trying to do is make sure John’s needs are taken care of.

There is a tremendous amount of conflict between the generations in this family. John needs a great deal of daily, even hourly, medical care and when his grandmother is not there, it is not clear that he is receiving it. The main source of emotional distress for Doris is John’s mother, who Doris says tends to steal, neglect her son, and lie, even about how long John has to live, She has a tendency to, she’s almost, I don’t want to label her in anyway. She has a tendency to lie a lot, about everything. For no reason, I mean she will lie about things you don’t even need to lie about. . .And, she has stolen from us before. . .multiple, multiple times. . .She neglects John in some ways. As far as, she doesn’t abuse him in any way, anyway whatsoever, but neglects him. . . She’ll let him lay in his bed all day instead of getting him in his wheelchair and taking him outside. . . John is not a typical child, but he also doesn’t need to lay in bed all day either.

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Coping with Sibling Rivalry Sibling rivalry complicates the provision of care in some, but certainly not all, families. By definition, disabilities may require additional care. Grandchildren with disabilities might need, and receive, more grandparent care. In some families, adult siblings think this is how it should be while in other families the imbalance creates tensions. Sometimes the tensions are centered around disapproval; the feeling that certain adult brothers and sisters are failing at parenting their own children and are asking far too much from the grandparents. In these cases, a dominant concern is the health and well-being of the grandparents. Adult children may be worried that grandma is going to wear herself out providing so much care. Other times, tensions are centered around jealousy; the feeling that some adult siblings are getting too much while others are not getting their fair share of help from grandparents. Adult children may be angry that their sister receives free childcare when they do not. No One Is Worried About Whether It Is Fair In some families, there is no sibling rivalry. Adult siblings are grateful that grandparents are providing more care for grandchildren with disabilities. Heidi, age 59, says she has seen no evidence of sibling rivalry in her family. Heidi provided a lot of assistance to each grandchild at birth, and more for Max, age four, because he has Down syndrome. While she still cares for all of them weekly, she provides more care for her daughter’s family because they have Max. She does not believe there is any sibling rivalry. She has defined fair as each person getting what they need. To my knowledge, no one is worried about whether it is fair. My kids all know, from when I raised them, that in different times in their lives, they need us more at one stage than at another. So if someone needs us we are there for them. My daughter’s family needs us more than the others, they have more kids and a special needs child, but no one is counting the minutes.

No Tension Between My Kids By the same token, Bree, age 76, says she has not seen any sibling rivalry in her family. Over the years she has provided a lot of care for her son’s and her daughter’s children. Because her daughter has four children, including 13 year-old Ava, who has Down syndrome and a set of twins, she provides a lot more assistance for her daughter’s children. She said her son understands completely. No tension between my kids. My son is a social worker and he does counseling, and he knows and understands about special need and the strain it can be on them to have a special needs kids. . .Being with Ava 24/7 is not easy. Not easy on my daughter’s husband. He is not as patient as she is. Her father and Ava get into more scraps. Just cleaning her braces every night, it’s not easy to do that.

My Other Kids Worry That I’m Doing Too Much Sometimes sibling rivalry relates to siblings worrying that grandparents are providing so much care that they will wear themselves out. In these cases, siblings disapprove of how much care the parents are asking for, and accepting from, the

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grandparents. It’s not that they want more for themselves, rather they want to protect their parents from doing too much. In Paula’s case her daughter was worried that she was forsaking her entire social life to provide care for Mike. Paula, age 66, cares for Mike, age seven, who has autism and was diagnosed with an epileptic condition due to a rare genetic mutation. My other kids worry that I’m doing too much. Especially, when I moved in, my older daughter was very concerned about it. She was like, “Mom, you are leaving all your friends and all your activities.” She was genuinely worried about me.

My Other Daughter Is Concerned That I’m Going to Wear Myself Out Similarly, Dawn’s other children worry that she is working too hard to care for Rob and not taking good enough care of herself. Dawn, age 70, cares for her oldest grandchild, Rob, age nine, who has cerebral palsy. My other daughter is concerned that I’m going to wear myself out. Yeah, she worries that I work too hard when I go out there, and as I said, it’s not so much anymore because he’s in school now during the day and then there’s a nurse there at night. One night a week he stays with me because they don’t have a nurse that night so he ends up sleeping downstairs with me so then I can do his feeding tube and stuff during the night and they can sleep. But yes, my other daughter is concerned that she thinks I’m going to wear myself out, she worries about that.

I Just Say to Them Put Yourself in Her Shoes for One Day Often sibling rivalry is about jealousy. One set of siblings complains that the other set receives more care, support, or time with grandparents. Colleen says when she catches even a whiff of jealousy she counsels them to be empathetic. Colleen, age 62, cares for seven year-old Sam and two year-old Kit, both of whom have Down syndrome. Because there is so much need, Colleen and her husband provide a lot more care for those grandchildren. The other daughters occasionally complain that they are not receiving their fair share of help. I do think that my daughters think I help my one daughter more than them, but I ignore the idea of it, because to me it does not matter. If any of them were in an emergency I would do it. Because my one daughter needs me more than the other two, there is nothing I can do about that. I am not even going to go there with them. . .I just say to them put yourself in her shoes for one day. I don’t think it is even about that. Really, it’s about what they are going through in their daily life, feeling sorry for themselves, their jobs and marriages. I try to be supportive and listen and they get over it.

They Were Not Happy That I Could Not Watch Their Kids In some families, sibling rivalry emerges because adult children want grandparents to care for all of their children at once. At 60, Marina tried to watch multiple grandchildren at once but because Carly, age two, has Williams syndrome and requires extra attention, she simply could not sustain it. She asked her son to move his children to the other grandparents for babysitting, leading to considerable conflict in the family. One son and his wife was pretty unhappy when I said I could not watch all three kids at once. That I could not watch their kids because I was watching Carly and her sister. They were not happy with me. His wife was not happy with me and she told me so. They were not happy

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that I could not watch their kids. But the other grandma was not working and the kids went there.

Marina is eager to smooth over any conflicts. She loves spending time with all five of her grandkids. She tries to include as many grandchildren as she can, particularly for fun times like Halloween. I love to watch all my grandkids. They are all delightful, I try to invite them all over, and spend time with them all. We have a big Halloween witch’s brew. I like to do fun things, gingerbread houses. I think they understand.

He Absolutely Hates His Brother That Did This to Us Sometimes sibling rivalry is about disapproval. In Donna’s case, one son is furious at the other son that he had children and used drugs, and left their mother responsible for the grandchildren. Donna, age 63, has adopted two grandchildren because one of her sons has substance abuse problems. Tony and Sally are 11 and 10 years old, respectively. Tony has ADHD and Sally has ADHD and adjustment disorders. Donna’s other son, who is 30 year-old, resents his brother for adding extra stress to their parents’ lives. There is a lot of anger and resentment towards my son for what he has done to us, taking away our retirement and changing our lives. . .My 30-year-old son is unmarried, he is single, and he absolutely hates his brother that did this to us.

I Think My Son Resents It but He Does Not Like His Sister Anymore Likewise, Jacki’s son is angry at his sister for having children, abusing substances, and leaving their mother to care for Mona. Jacki, age 65, and her husband adopted her nine year-old granddaughter, Mona, who is diagnosed with ADHD. Her middle daughter has lost custody of all four of her children due to mental health issues and drug addiction. Jacki’s son feels she does too much for her daughter and neglects other family members; in frustration, he moved away. I think my son resents it but he does not like his sister anymore. He is a real black and white person, as in either good or bad, right or wrong. To him, she is wrong. She’s not a good person as far as he’s concerned. I think that’s part of the reason he moved to another state, he did not like the family dynamics here anymore. He thinks I do too much. They have a son and I’m never a grandparent to them like I would be if I didn’t have Mona all the time. It’s weird because if they’re around, grandparents tend to be more lenient. I can’t do that because Mona is there and I’m still going to be as strict with her when they’re there. I do not have very much time to spend with my other grandchildren, because I don’t have any place to send Mona.

She Basically Said We Were Bad and That She Didn’t Really Want to Be a Part of Our Lives Jealousy has also nearly severed Rose’s relationship with one daughter who is jealous that the other daughter’s children receive so much grandparental care. Rose, age 64, cares for eight year-old Mia, who has cerebral palsy and is quadriplegic. Rose’s older daughter has shown jealousy because of the attention that Rose gives her youngest daughter’s children. Indeed, their relationship has strained over the years.

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She basically said we were bad and that she didn’t really want to be a part of our lives.

I No Longer Have the Close Adult Relationships I Used to Have with Our Adult Kids Similarly, the imbalance in grandparental care and support has nearly severed family ties in Kim’s blended family. Kim felt she had to provide care for her step-children’s children, but now her own adult children have drifted away. At 59, Kim and her husband are sole legal guardians of two grandchildren: Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. Kim’s stepdaughter, who has bi-polar disorder and heroin addiction, has no contact with any of her five children. Kim says that since she has been caring so intensely for two of her husband’s daughter’s children, her relationships with her own adult children, and his other adult children, and all of their other grandchildren, have deteriorated. That is a heartache. I no longer have the close adult relationships I used to have with our adult kids, mine or his. We were close and did stuff. But when I took on Matt I lost those relationships. My daughter used to live close to us and I helped her with her kids a lot, but once we got Matt they moved away to be closer to the other side of the family because I was no longer available to her. That was really hard. I lost all those relationships. We are not close to our adult kids on either side.

Her other grandchildren are sprinkled all over the country and she rarely gets to see any of them. Kim does not have the resources to travel and the adult children rarely come to visit. And we don’t get to see the other grandchildren very often. I can’t travel to see my kids and grandkids, they are all over the US and I don’t have the money or the time. We have 16 grandkids, I have all these other beautiful grandchildren, but we have seen them only twice in the past nine years. Last year we took Matt and Izzy to Washington so we saw some of them then. I don’t have the money to travel to see them. And they come to see me some but not often, it is hard for them.

When they do finally get together, it can be tense. Last Thanksgiving was tense and this year no one is coming to visit. The last two Thanksgivings, my daughters and their families came to see us for three days and that was good. But we had been apart for awhile and there was some strain in it. And Matt calls us mom and dad and that was uncomfortable for my own children. They were sad, they wanted to come to mom’s house, grandma’s house, and it was differently. This year nobody is coming. They are all staying home.

Kim’s adult children are angry that she is not helping them; they resent that all of her time and energy and resources are devoted to one step-daughter’s children. My daughter and her family were here a few years ago and she became really angry at us, and at my husband, there is a lot of resentment that I am not helping them. She was really yelling, loud. She went after my husband to pop him. They are angry, resentful. They are grateful that we are taking care of Matt and Izzy but they all have a loss of their mom and their grandmom, they are angry, they resent.

None of the adult children offer to help Kim and her husband. She thinks they should, and in particular that her husband’s children should, but they do not. There is a great deal of conflict all around this blended family.

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None of them help, none of them offer to send gifts or help us financially. They never ask how it is, what our journey is like. They never ask if they can help. Take the kids for a week. Nothing. This is really hard to explain to people. You would think they would help us, help take care of the kids. You would think you could get help from your family. At least David’s kids should offer to help, but they don’t. And mine resent, they are angry. Why don’t they offer to take the kids for a week, or help with the finances?

Managing Adult Children In some families, providing intensive care for grandchildren with disabilities is made more challenging because grandparents are also managing the wishes, and conflicting demands, of their adult children. In some families, multiple generations are all on the same page. They have a shared, unified, agreeable view about how best to provide care. But it is no surprise that in other families, parents and grandparents have different views about how best to care for grandchildren with disabilities. Sometimes grandparents simply, and purposefully, follow the wishes of the parents. Others lock horns, particularly if they feel their grandchildren are not receiving sufficient or appropriate care. When arguments ensue, grandchildren are often frontline witnesses. An additional source of tension is sibling rivalry. Though in some families adult siblings are glad that grandparents are providing more care to grandchildren with disabilities, in other families there are tensions about how much care grandparents should provide and how much care each family is receiving. Sibling rivalry may be prompted by disapproval, concerns that the parents are not doing enough to raise their own children while the grandparents are doing too much. Or, it may be prompted by jealousy, concerns that some adult children are getting more than their fair share. Managing adult children, with regard to parenting styles and sibling rivalry, is an extra set of responsibilities that many grandparents must wrestle with when they care for grandchildren with disabilities.

Notes 1. Hoang and Kirby (2019), Findler (2016), Musil et al. (2013), Barnett et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010), Hastings et al. (2002) and Clarke et al. (1999). 2. Hoang and Kirby (2019), Musil et al. (2013), Barnett et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010) and Mason et al. (2007). 3. Hoang and Kirby (2019), Musil et al. (2013), Barnett et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010) and Breheny et al. (2013). 4. Hoang and Kirby (2019), Musil et al. (2013), Barnett et al. (2012), Anderson (2010), Bengtson and Oyama (2010) and Silverstein and Giarrusso (2010). 5. Hoang and Kirby (2019), Musil et al. (2013), Barnett et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010), Worrall (2009) and Harden et al. (2004). 6. Findler (2016) and Meyer (2014). 7. Hoang and Kirby (2019), Musil et al. (2013), Barnett et al. (2012), Bengtson and Oyama (2010), Silverstein and Giarrusso (2010) and Boll et al. (2003). 8. Miller et al. (2012).

Chapter 10

Never Ending Care Work

Some people provide a lot more care than others throughout their lifetimes. All of the grandparents we interviewed for this book are providing care to grandchildren with disabilities. Most of them are also caring for their other grandchildren, particularly the siblings of their grandchildren with disabilities. Sometimes those siblings get along, making their jobs a bit easier, other times siblings are at loggerheads, making grandparenting that much more challenging. Many of the grandparents we interviewed are also caring for their own parents, siblings, or partners. Indeed, they are juggling multiple care roles. Some feel they are in a club sandwich generation, caught in the middle, supporting multiple generations older and younger than themselves.1 Some are simultaneous care workers, caring for multiple family members at once. Others are sequential care workers, caring for multiple family members one after another after another. As they look to the future, nearly all expect to continue caring for their grandchildren with disabilities for as long as they are able. Only a few expect their grandchildren to become independent adults; most are uncertain what the future holds. The most common plan is to remain available as needed. For many of these grandparents, care work provides a constant drumbeat across their days and years.

The Challenges of Never Ending Care Work Theories of care work are vital to our understanding of how many grandmothers, and a growing share of grandfathers, balance work and family responsibilities.2 Though men are doing more than in previous decades, women still perform about twice as much care work; women are more likely to care for children, siblings, and parents.3 Studies have explored the sandwich generation: women who are in the middle of caring for their own parents, adult children, and grandchildren.4 They are known as a “club sandwich” generation when care workers are caring for three generations or more.5 © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_10

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In the US, children are generally expected to mature into autonomous, independent young adults. Many do not, but the expectations remain powerful. Children with disabilities are often less likely to become independent. For many, the hope is interdependence or dependence across the life course.6 For grandparents there is a lot of uncertainty as they try to plan ahead. For the most part, they simply do not know what their grandchildren will be able to do in years ahead. Future care for grandchildren with disabilities is a major concern for grandparents, in particular custodial grandparents.7 Planning is crucial for custodial grandparents given that they are getting older and might not have sufficient physical and mental health to sustain care. Some grandparents worry about leaving their grandchild behind and having no one left to provide care for them.8 Understandably, grandparents who care for grandchildren with disabilities tend to be concerned that they may not have enough financial, emotional, or physical strength to provide as much care as is needed for as many years as it is needed.9 A mixed-method study of African American custodial grandmothers found that more than 60% of the participants reported concerns about the future and the eventuality that no other family members would replace when they can no longer care for the grandchildren due to poor health or death.10 With few other options, some families count on the siblings of their grandchildren with disabilities to care for them in the future. Why do grandparents provide so much care for their grandchildren, spouses, adult children, parents, and others? We find little support for the exchange and reciprocity argument that grandparents provide care with the expectation that they will receive care when they need it.11 In fact, most of the people they care for will proceed them in death. Some hope their adult children might be able to care for them when they are frail but suspect that the younger generations will be too busy taking care of children with disabilities. Moreover, for those grandparents who have become custodial grandparents, we found no evidence that grandparents expected reciprocal care. By contrast, we find substantial support for the feminist argument that women are continuing to perform what has been traditionally defined as women’s work.12 In our interviews, we found that care work remains quite gendered.13 Some set limits on the amount of care work they were willing to perform but most are actively, unquestioningly, providing as much care as they are able to provide. Overwhelmingly, we find that grandparents are providing care, as political economy theories suggest, because they are responding to unmet needs.14 Alternative childcare options are often inadequate or too expensive; federal laws are unevenly enforced; poverty-based programs are inadequate and intermittent; schools do not provide sufficient supports; health care providers do not seem to understand the complexities of disabilities; parents do not have sufficient paid time off; respite care is rarely available; and the costs of treatments and therapies is often exorbitant. We find that grandparents are providing so much care because their grandchildren’s needs are not otherwise being met.

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Caring for Siblings In addition to caring for grandchildren with disabilities, most of the grandparents we interviewed are also caring for their other grandchildren, particularly the siblings of those with disabilities. Not surprisingly, sometimes siblings make grandparenting easier and sometimes they make it so much harder. When grandchildren get along, and play nicely, grandparenting can go quite smoothly. But when grandchildren do not get along, and the children are actively mean toward each other, grandparenting can be frustrating and exhausting. We Help with all Three Kids Many grandparents have a revolving door of grandchildren coming and going. The specifics may change from day to day, and from year to year, but the one constant is that they are very often caring for grandchildren. Rae, age 61, is recently unemployed and cares for all four of her grandchildren. She watches Paul, age three, who has Down syndrome, one to three times a week and always for the full day on Tuesday. She often has the grandchildren to her house for sleepovers, or has sleepovers with Paul at his house. We help with all three kids. We will pick the kids up for her, pick up kids from school or take them to a game. I’m always there if my daughter needs me. I helped with the older kids when they were younger, and we still now drive them to school or games. I also took care of my oldest grandson, years ago I left my job, for five years because he was a preemie and I took care of him 8-5, five days a week till he went to kindergarten. And I used to take my granddaughter every Tuesday afternoon from 11-5, for years.

His Brother and Sister They Are Really Good with Working with Him When siblings are loving and kind, grandparenting them all at once can go smoothly. Anna, age 66, cares for her seven year-old grandson Jason, who has Down syndrome and is being tested for autism. Jason is the youngest of three children and Anna says they all get along well. He is really involved with his brother and sister they are really good with working with him. His sister reads with him and his brother plays with him a lot. In the evenings they spend a lot of time with him. . .Sunday is church. The family spends a lot of time in church. He knows the routine. He sits in front row with his brother. He will get up and try to do what his sister is doing as a leader in the church,

His Older Brother Never Walks by Without Giving Max a Hug and Kiss The situation is similarly calm for Heidi. Age 59, Heidi works over 50 hours a week. Max, age four, who has Down syndrome, is the youngest of three siblings and Heidi often watches all of them at the same time. The children are close, and Max has a particularly strong bond with his older brother. He likes to be in the same room with his brothers and sisters. If they go to a bedroom and close the door, he will open it, to be with them. They get along well. The older two fight crazy. But they get along well. His older brother is good with Max, he is his special buddy. His older brother never walks by without giving Max a hug and kiss. His older sister likes him but does not show him attention.

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He Knows that She Is a Little Bit Different and He Will Help Her Do Stuff Sometimes Sometimes siblings even help out, making care that much easier for grandparents. Once Mia and her husband retired, they moved from the northeast to the south to care for Cally, age 13, who has Down syndrome, and her younger brother. They enjoy outings. Though her brother is younger, Mia says he will help Cally with spatial tasks that are challenging for her. We go to the parks, fabulous parks here, especially compared to where we lived up north. We take them to the zoo, museums. Her brother is six years younger, they do great together, a few squabbles as any siblings do. He is really good. He knows that she is a little bit different and he will help her do stuff sometimes, if she has trouble doing it. And he will also say, “Cally can’t you get your shoes on faster?” If they are trying to build with Brio trains, and spatially she can’t do some stuff, he will do it for her. He is good about it.

Though they like taking the grandchildren together because it gives their son and daughter-in-law a break, they also like to watch them separately so they can enjoy time alone with each of them. Separating them for more age-appropriate activities appears to be a clever strategy. They are six years apart. And it gives her brother a chance to be the only child with his parents. Last spring we took him to a lady with baby goats, she makes cheese, he got to feed them and pet them. What six year-old boy does not like that? And so Cally got to stay home and be an only child with her parents. Another time we took Cally to a play, the matinee of Diary of Anne Frank, so her brother got to stay home. We can do more age appropriate things.

At Other Times There Is Typical Sibling Rivalry As with most care work, there are good days and bad days between siblings. Betty never knows which kind of day it will be. Betty, age 63, cares for five year-old Carl, who has Williams syndrome, and his brother. She says the brothers get along much like other siblings. Carl and his older brother are typical siblings. At times they love each other and hug and it is great. At other times there is typical sibling rivalry. It depends when you catch them.

She’s Not an Easy Task When It’s Just the Two of Them In Stella’s case, the situation seems a bit precarious. Stella, age 66, cares her 14 yearold grandson, Chase, who is diagnosed with social anxiety and being anti-social, and her eight year-old Karla, who is diagnosed with audio processing disorder, ADHD, anxiety, and sensory processing disorder. She says Chase and Carla are close but fight often and become verbally abusive. Chase now babysits Karla, though Stella says that can be problematic. Chase is getting older now and can somewhat care for his sister. Sometimes she just, she’s tougher than he is. She’s stronger than he is. So, she’s not an easy task when it’s just the two of them. So he’s been on the babysitting realm with her, but I don’t know how that goes. I’m not there, so they fight a lot. Or they don’t, it’s amazing what he can do even though she’s eight, with her. I mean, sometimes they sleep in the same room. It’s just how they do, and they’ve always been that way, and sometimes people get all crazy because he’s 14, but he’s just so used to it. Yes. They are very close. And you know, they all play video good whatever, and they know some of that stuff together, you know, and Snapchat and blah, blah, blah, blah, blah.

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The Twins Did Not Realize that Ava Had Downs When They Were Little and They Were Frustrated with Her Behavior Sometimes younger siblings do not yet understand about disabilities and they can be baffled and frustrated by certain behaviors. With age and increased understanding sometimes relationships, and therefore grandparenting, become easier. Bree and her daughter spend a lot of time navigating, and trying to reduce, those frustrations. Bree, age 76 works part-time and cares for Ava, age 13, who has Down syndrome. For many years Ava shared a room with her younger twin sisters, which led to quite a bit of frustration. Now Ava has her own room, but only because her mother now sleeps in the attic. The twins did not realize that Ava had Downs when they were little and they were frustrated with her behavior a lot, but now they are not as frustrated. I think their mom has talked to them. Kids squabble even when they don’t have special needs. They all shared a bedroom but now they have rearranged so Ava has a room by herself. . .When Ava gets home from school she can spend a lot of time entertaining herself, a lot of play things that she is interested in are still in Ava’s room, like the doll house. Ava is 13 and has learned to masturbate and she will be in bed and the twins did not understand that and that is one of the reasons they put her in another room. And her mother has told her it is private, not to do it when others around. But at the beginning she did not understand that.

I Am Not Sure She Liked Her at First Similarly, Marina finds that as the grandchildren grow older and understand more about disabilities, her job becomes a bit less challenging. Marina, age 60, cares for Carly, age two, who has Williams Syndrome. She says that Carly’s relationship with her old sister is improving as they both get a little older. It was hard on Carly’s older sister at first, most sisters have babies who grow up and Carly was not growing up I am not sure she liked her at first. But she is liking her now because now Carly really is growing up more, developing more. They are not play mates but her big sister likes her at least.

They Still Have Rough and Tumble and Get Pretty Rough Sometimes sibling play and disagreements can become quite physical. Linda, age 61, cares for George, age five, who has Down syndrome, and his younger brother. Linda has very different kinds of days when she has George by himself and when she has his sibling as well. He plays differently when his brother is there. It is more scattered when his brother is there. By himself, we have a room at our house devoted to the kids, and he will sit and play with a tea party set and farm animals. A calmer pace. With other kids it gets too much, he can’t find something to do, just goes from one toy to another.

Their relationship, and therefore Linda’s grandparenting, appears to be getting easier with age. As they age, Linda notes that the brothers are more understanding and better able to share. Still, their play can become rough on a moment’s notice. The brothers get along really well, better now. Just 17 months apart, George’s younger brother is understanding more about helping his brother, and George is more interested in sharing now. He knows what his brother likes, he will take things directly to him. They still have rough and tumble and get pretty rough. George cannot sit and play a board game, anything like that. His brother is more into iPad. They both love iPads. I have feelings about

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that. My kids did not grow up with iPads. I see the good but sometimes I feel they are too much.

Most of the Time They Do Not Get Along Well When siblings do not get along well, grandparents may dread having them at the same time. Caring for siblings for the day can be arduous. Chris, age 67, cares for Wendy, who is ten and diagnosed with anxiety disorder and has autistic symptoms, and Mark who is seven and diagnosed with ADHD and Oppositional Defiant Disorder. Running interference between fighting siblings is a big part of Chris’ job when she watches the grandchildren after school and occasional weekends. She says it is exhausting and is taking a toll on her health. Most of the time they do not get along well, but when they do it is great. Mark is loud and screeches and she has big audio issues. She wears headphones at school all day to muffle the sound, she can’t handle noise. We make her take the headphones off at home. It’s not that loud here. She will wear them at a movie, even wear earplugs and headphones. Loud noise is very hard on her. So when Mark gets loud, she says she hates him. One day when we were picking them up, he was being loud and she said, “Can you just run over him with the car.” It is very hard for her. When they were younger, he would screech and she would cry, and her mom would say, “Wendy no one is hurting you.” And I finally told my daughter, “He may indeed be hurting her.” So they now accommodate it, rather than telling her it is not hurting her.

In addition to being very loud at times, Mark tends to have violent outbursts. He often hits his mother and his sister. As he gets older and stronger, Chris becomes more worried about how much he hurts his sister. I worry he will hurt someone badly as he gets older. When he pounds Wendy, it is extremely hard. He has definitely hurt her. His birth mother used alcohol, and he does not have the physical ramifications of fetal alcohol syndrome, he may well suffer some difficulties due to the alcohol. I suspect that is true. Because consequences don’t mean much to him.

Because of his violent outbursts, often with his sister, many babysitters refuse to make return visits. Moreover, Mark has been expelled from several children’s programs. The family is increasingly reliant on Chris and her husband for childcare. Last summer, Chris was scheduled to have days off while the grandchildren went to a summer camp, but Mark hit his sister and was expelled. Chris and her husband ended up watching them. They went to a summer camp, but Mark is now suspended from that. He was kicked out for punching his sister in the face. My daughter got an email saying we just can’t have him here. He was also kicked out of the after school program. And other things. He has been kicked out of several.

As he grows older and stronger, the violent outbursts become scarier. Chris would like to reduce how much care she is providing, but when neither organized programs or babysitters will accept him, there are few alternatives.

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Sandwich Generation Some of the grandparents we interviewed are providing care to many people other than grandchildren with disabilities and their siblings. Those in the sandwich generation are most often caring for their grandchildren and their aging parents, but some are also caring for their adult children, spouses, or other family members. Sometimes that care is simultaneous and sometimes it is sequential. For some the care work seems to never end while others take steps to make sure that it ends. The work can be rewarding; it can also be exhausting. I’m Just Happy I’m Able to Do It For many grandparents, caring for so many relatives is rewarding work. They can see just how much relief they are providing. Anna has provided a great deal of care over the years. She has cared for all six grandchildren throughout their lives, particularly her son’s three children who lived with her until a few years ago. Additionally, she left work at age 56 to care for her aunt with Alzheimer’s disease. And now she devotes one weekend a month to caring for her daughter’s three children, including seven year-old Jason, who has Down syndrome. She devotes another weekend a month to caring for her mother. I never really thought much about it. . .It’s a natural thing for me. I don’t mind at all. I enjoy it. I’m just happy I’m able to do it.

Anna finds it particularly rewarding to give her adult daughter, Jason’s mom, a break from her parenting duties. I just love to see them all happy I love to see her come and sit down and not have to do anything for a few hours. To just come in and not have to take on all those motherly duties for a few hours. It does me good to see her be able to breathe sometimes.

My Life Has Been on Hold for a While Care work is rewarding for Dorothy as well, but she has noticed that as she cares for more people, her own life is passing her by. Dorothy, age 59, is very close to all three daughters and they see each other regularly. In fact, one of the daughters is living with her now while waiting to close on a house. Her daughter moved closer to her so Dorothy could help with all of her grandchildren, particularly Johnny, age two, who has autism. Dorothy is also taking care of her ailing mother. My mom is in rehab right now because she just broke her legs. She is 78. I have been going up there. That’s not easy in that age. This summer was very difficult for me because my mom has been up there all summer and I had the kids all summer. My life has been on hold for a while since I retired. Babysitting is a full-time job when they are not in school. Because I’m the only grandparent. My husband passed away years ago. I have to take care of my home, my other jobs, everything else, plus my kids and grandkids and their dogs. My kids have lived with me at one point or another.

Somehow My Life Has Evolved in to Caregiving Few of the grandparents we interviewed planned a life of care work. For most, needs arose, and they stepped in to help. Repeatedly. Marina never expected to be caring for so many people, she has been an almost constant care provider to her husband before he died, her parents, her deceased husband’s parents, and now her

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grandchildren. Currently age 60, she watches Carly, age two, who has Williams Syndrome several days a week, and her other grandchildren sporadically. I never expected to care for the grandkids. Never. My parents did not care for my kids. But I have always enjoyed kids. Somehow my life has evolved in to caregiving. I cared for my in-laws, my husband, my kids, now my grandkids. You do what you need to do. You love somebody and you care for them. No one can care for them and love them the way you can. I trained to do dialysis for my husband, that way we could all be home for dinner. You create whatever normality you can. It works for us. Nobody is going to love Carly like her family.

My Oldest Still Spends the Night Quite Often, but Only Him When grandparents provide care for relatives continually over the years some, eventually, begin to set some limits. In recent decades Linda has provided care for her grandmother, then her mother, then her father. Between constant care work and her job, she had little time for much else. She never planned to care for so many people or forfeit her own social life. It was never a big picture thing. . .my grandmother had dementia and my mom helped but I did a lot, I relieved my mom some. Then my mom developed dementia, and my dad had heart issues, and I was the one there. I’m the only daughter. I have a brother. But I was daddy’s girl. And so I was the one. That is just what I did. Between work and family, we did not have a social circle, what I see a lot of my neighbors here have.

Then she devoted years to watching her first two grandchildren and still spends a great deal of time with her oldest grandson. When he was young, he and his mom lived with Linda and her husband, and though they have moved out, Linda provides a great deal of intensive care for him. My older grandson spends many nights with us. . .For the first six years he was the only grandchild and he slept over many nights. Most nights. Maybe six of seven nights. My oldest still spends the night quite often, but only him. . .they don’t’ need as much help now. My oldest still relies on us a lot, to help him with things for school, cough medicine, a certain shirt, school supplies. He still comes on Saturday and for the night almost every weekend.

Now, Linda watches George, age five, who has Down syndrome, and his brother after school several days a week, and occasionally nights and weekends. She never keeps them overnight, even though her daughter hints that she wishes she would, because she feels that after watching them so much during the day she needs the break at night. After decades of care work, Linda is starting to establish some limits. My Sister Is Harder to Take Care than Nelson Was Denise has been providing care for people nearly her entire life. At 55, she has been unemployed for 11 years. She lives with her only son and grandson and provides about 50 hours a week of care for Nelson, age ten, who has moderate autism and ADHD. Previously, she cared for her mom and her dad when they were sick. Then she cared for her sister, who has severe disabilities, for many years. Now her sister is in a nursing home, and Denise would visit her each day while Nelson is at school if she had a car. She cared for her sister and her grandson simultaneously for several years and doing double duty was challenging.

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My sister is harder to take care than Nelson was. Because, one, she’s an adult. Two, she was very argumentative and could be spiteful. And, it was very difficult, it was very difficult to take care of my sister. She was a handful. At least with Nelson, we can say, we have to help him with his bath, but we’re getting there, but at least he’ll take it. Where my sister is an adult, she would never take a bath or shower or whatever. . .And that made it harder because Nelson was already hard to take care of when he was younger, and so it was hard.

I Have a Brother that I Take Care Of Similarly, Hanna, an immigrant, cares for many people at once. She is caring for her daughter and grandson, Danny, who is 19 and has autism, and her ailing brother. Hanna started to cry when talking about the type of care work she provides to Danny and her brother and how she constantly worries about her daughter who has some health issues. It is not just him, it’s her. I worry about everybody. . .I only have one brother and I take care of him. I cook for him everyday.

He Has a Lot of Physical Problems Several of the grandparents we interviewed were caring for their grandchildren with disabilities with little to no help from their partners because their partners also had disabilities. Anna takes her grandchildren to the park, science museum, and library. She keeps them overnight as well. But due to heart problems and physical limitations, her husband is not able to help her care for the grandkids. In fact, she needs to care for him as well. My husband does not come to help, he has a lot of physical problems. If the children come to our house, then he will play with them but he cannot provide care for them, he cannot be alone with them. He has severe heart problems. When they are here, he visits with them. They laugh. When I’m gone for the weekend, he has two other daughters who look in on him. He can get out and around but he cannot take care of them.

Like several of the grandparents we interviewed, Anna is a member of the club sandwich generation. In addition to caring for her husband, she alternates weekends caring for the grandchildren and her mother. I also try to go one weekend a month to see about my mother. She is 91 years old. My mom lives independently, about five hours a way, I go see her one weekend a month. She does volunteer work. She had a fall a few years ago but she still gets out to do her own banking and shopping. I go periodically with her to see the doctor and be sure her medications are proper and set up things for her. She does extremely well for her age. She takes busses around the city by herself. I like to make sure things are going smoothly.

I Am Like a Sandwich, My Time Is Demanded on Different Levels Similarly, Marina cares for multiple generations, even though she is still working part-time. Between caring for Carly, who has Williams syndrome, and her other grandchildren, and her father now that he has had a stroke, she is feeling pulled in too many directions. She describes herself as part of the club sandwich generation. As long as everything goes smoothly it goes well. My dad’s stroke really put a wrench in my plans. I am like a sandwich, my time is demanded on different levels. Yesterday was my Friday off but I spent it with my parents, bringing them food and relieving my mom so she could run errands. I’m lucky if I ever get one solid day. If I get a day, I stay home and I refuse

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to get dressed on that day. Someone will call and need me, but I’m not showered, not dressed, so I can’t go. Isn’t that terrible. I wish I could do more for my parents, they need me more now. They worry I do too much for Carly. I can’t do more for them because I need to do so much for Carly. I have four days a week that are for my work and me, but I have to take care of my parents, now especially since my dad’s stroke.

Marina has a lot on her plate now and one way she manages her multiple roles is to take Carly with her as she tends to her father. Now part of my time is helping my parents, you cannot be everything for everyone so something has to give. I take Carly to see them and to the hospital when he was there. They have a special bond, she lays her head on his shoulder, it is very special.

I Did My Bit When They Were Younger Sometimes grandparents who have grown weary of being in the sandwich generation find a way to withdraw. Mia, age 66, cares for all of her grandchildren, including Cally, age 13, who has Down syndrome. For decades she also cared for her mom and dad, but when Cally was born, and after she and her husband had retired, they moved south to help care for Cally. Now Mia’s sister cares for their mom, who is 92, but not without complaining. She just moved into an independent section of assisted living, so she gets one meal a day and they clean her apt for her. For years we lived closest to my parents and for 25 years I did everything. Whatever they needed, we did it. Clean the gutters. But now we moved and they moved, and now my other sister is closer and now she is the one. She complains but I tell her I did my bit when they were younger. I did my 25 years of doing everything they needed, and now my sister can do it. When we moved away from my mom, and toward my son so we could help with Cally, my mom was like, go for it. That is where you are needed. My sister has to do things now, and she complains. She does not understand that we are helping Cally. She has a grandson but she does not spend time with him.

Future Care for Grandchildren with Disabilities When we asked grandparents about future care for grandchildren with disabilities, some were able to look much further ahead than others. Some were preoccupied with the next school year while others worried what it would mean if they died before their custodial grandchildren were adults. In the long run, a few could foresee transitions, either to complete or partial independence. Some imagined that the siblings would provide care once the grandparents and parents had died. Most envisioned continuing to provide care as long as they were able. Consistent with other research, we found that much of the anxiety grandparents felt evolved around their certain, but perhaps premature, morbidity and mortality. Because they are likely to be needed to provide more intense care over more years, grandparents who care for grandchildren with disabilities have even more concerns about being fit enough to provide that care over the years. Many are concerned that if the physical effort becomes too much they may have to reduce the amount of care they provide.15 We

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found that custodial grandparents, in particular, were worried about the safety and wellbeing of their grandchildren with disabilities should they become too frail or die. Who would then care for their grandchildren? Imagining Transitions to Full or Partial Independence Powerful social and cultural norms dictate that all children should develop along a continuum toward autonomy and independence, but in fact many do not. Children with disabilities are more likely to mature into young adults that operate within interdependence or dependence.16 Often what makes caring for children with disabilities challenging is the uncertainty. Grandparents simply did not know what the future would hold. Nonetheless, some grandparents look to a future of full or partial independence for their grandchildren with disabilities and may even be putting plans in place. I Think He’ll Be Able to Live Independently Some grandparents predict that their grandchildren with disabilities will be able to live independent lives. Lizzy does. She believes her custodial grandson will become a professional ball player. Lizzy, age 55, cares for Mark, who is 12 and has ADHD. Though she expects to continue to have custody and raise Mark until he is an adult, she is considering a move back to Pennsylvania. She says there would be better sports programs for Mark, more job opportunities for both of them, and closer proximity to his mother and sisters so that he might see them more than once a year. I’m hoping that Mark will have enough morals and values instilled in him, he is so generous and kind. And he will be busy playing school sports, and be a pro player playing baseball, he will be the pitcher, I’m just hoping he gets through school without anything to do with drugs. I’m afraid of all that. My daughter was fine till age 16. I hope he’ll be fine and graduate. I think he’ll be able to live independently and have a job, start a family, he’ll be a really good dad.

I Don’t Worry About Her Future Similarly, Jennifer believes her granddaughter will be able to live independently because she knows of another woman with cerebral palsy who does so. Jennifer, age 60, cares for two year-old Tina, and is very optimistic about Tina’s future. I have a friend that I work with in the summer and her sister has CP. She’s 30. Her sister graduated from college, she just bought her own house. I ran home and told my daughter. Tina will have all the education that she needs. She has a great support network. I don’t really think of her as being disabled anymore. I don’t worry about her future.

I Really Do Not Know What Will Be Needed from Me as He Ages While most simply do not know what the future holds, some are optimistic that their grandchild may be able to live independently because of the mild nature of their disabilities. Betty, age 63, cares for Carl, who is five and has Williams syndrome. The most consistent part about Carl’s disability has been how inconsistent his symptoms and needs have been as he ages. She is not sure what he will need, nor what she will be asked to provide.

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I really do not know what will be needed from me as he ages. I just don’t know what his situation will be, it may be that he will just be quirky, or he may need to live at home and I will play a role. He is an unknown quantity.

In part Betty’s ambiguity is linked to the mildness of Carl’s conditions. She says he is only missing some of the genes, and only has some of the symptoms associated with Williams. Whether he will be able to live independently as an adult is anyone’s guess. I feel very lucky that he has such a mild case. I really feel for kids with severe disabilities. My answers would be so different if he had full blown Williams. He is mildly affected. Some have trouble with activities of daily living like dressing or going upstairs. He can do all those things. He is doing so well and improves all the time. . .We are amazed by how well he is doing. He is in a private school same as his brother and so far he is doing ok in pre-K. We don’t know if that will continue or not, if his difficulties will be an issue. He truly has blossomed.

As We Look Ahead, I Don’t Think It Will Change Much Many grandparents expect to continue to provide care for their grandchildren with disabilities until, and then even after, grandchildren enter a group home. Mia cares for all of her grandchildren, including Cally, age 13, who has Down syndrome. When they retired, she and her husband moved south specially to be near enough to care for Cally. As we look ahead, I don’t think it will change much. She will be progressing, and enjoy coming to our house and spending time with us. I think she will be living at home and then later when much older be able to live independent of her parents but in some sort of house that provides services for her.

I Feel Pretty Comfortable with That Place Some grandparents know that their grandchildren will never be fully independent but hope to help them move to a residence with supervised assisted living. Though her granddaughter is only 13, Joyce has already found the perfect facility. In fact, she has found two, depending on just how much supervision Mindy may need. Joyce, age 61 and her husband care for Mindy, who has DiGeorge syndrome, around-the-clock. When she is an adult, they expect she will need constant supervision and assistance with most activities of daily living. One option provides more supervision. She’s on a list for a group home. And, I went and toured it and it was really nice. It’s an Apostolic Christian home. And, you have to sign her up every year to tell them you’re still interested. She’s not able to be there until she’s 18 which is fine with us. But, also, after she’s 18, you just have to keep signing her up every year. And, if there’s an opening, they’ll call you and you can still say no. They just leave your name up there at the top. So, at a time when she needs to spread her wings more. I mean, that’s what you do, you grow up. And you leave home. For her, growing up might be 30, whatever we think. But, at that point, we’d say, “Yeah, we’re ready.” So, when the next opening is. She would then go into this group home.

Another option provides less supervision and right now they are not sure which might be more appropriate for Mindy in the future.

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I think what she would fit into is a CIL (Center for Independent Living) which is a house that has somebody that oversees eight kids or 16—wherever she would fit in the best. As opposed to the group home where there’s a lot of kids with nursing and all that.

She is not worried about the quality of care at the Christian group home because so many have referred her to it. Joyce first heard about it from a neighbor whose son has a disability and who was putting him on waiting lists. Then she heard people talking about it at Mindy’s day camp. Then a friend began to work there as a nurse and gave a glowing report. I called her, and she’s a nurse and she said, “This is a place where you need to get her on.” People don’t leave there. The CNAs don’t leave. . .This is a wonderful place.” So I thought, when all these people keep telling me that, I ought to act on that. There must be something. There must be a reason people keep telling me about this place. So I went and toured it and it’s pretty nice. So I feel pretty comfortable with that place. It isn’t like I toured ten. I was—I was very comfortable there, so. It’s close.

Joyce and her husband would like to continue caring for Mindy as long as they are able, but since they do not know for sure how many years they have left, nor how healthy they will be, they are grateful to have such a promising option. I would hope that we’d still be able to visit her frequently. At this place, you can take her home for the weekends. You can take her out to dinner. You can take her on vacations. So, I hope it’s a smooth transition. I know it’ll be hard initially. Harder for us than her probably. In fact, when I went to tour, it made me tear up. It’s like, jeesh, this is down the road, and I’m tearing now. So, emotionally it’ll be hard I think. I’m worried about how she’ll feel being away from home and I don’t know if she will be able to express that well enough.

He Is Going to End up in One of Those Group Homes Similarly, Maria is certain her grandson will transition to a group home but she and her daughter have not yet found one that they like. Maria, age 71, cares for Marco, who has Prader-Willi and asthma. Maria worries a lot about Marco’s future since she believes that he will never be able to be left alone without supervision. Because this is a syndrome that he could never be left alone and eventually he is going to end up in one of those group homes. Because parents don't last forever. So of course that's a big issue and my daughter still has to find one that she really likes. Not only because Marco has a syndrome but because of his stomach condition. He needs a home that there's some nursing staff. And that's hard to find.

Continuing to Provide Care As Long as They Are Able The majority of the grandparents we interviewed imagined that they would continue to provide care as long as their health permitted them to do so. Some worried that they might not be in good enough health, or even alive, long enough to see their grandchildren with disabilities through to adulthood. Like other studies, we found that aging grandparents were very concerned about their capacity to care for grandchildren with disabilities as they too grew older.17 Many hoped to stay as fit as possible to assure that they could continue to provide care as their grandchildren neared adulthood, while others were already feeling the need to reduce care due to declining physical health.

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We Just Do the Best We Can Several grandparents noted that they are already providing care for a lot longer than they intended. Still, they imagine that they will continue to do so for as long as they can. Arlene, age 53, and her husband care for their daughter and two children, who live with them. Carl, age eight, has cerebral palsy and has seizures. She and her husband did not expect their daughter to live with them for so long and now there is no end in sight. Arlene’s house is not suitable for Carl, who needs to live on a single level. And Carl’s mother cannot afford to purchase or renovate a home that would be fully accessible. It was just supposed to be part-time for her to get on her feet and stuff, but now we’re kind of in a bind because the housing that she could afford, it’s not handicap accessible. By the time you do all the renovations and stuff she wouldn’t be able to afford it. But, yet if she found a house that was handicap accessible, she wouldn’t be able to afford that either. . .We’re just trying to figure out the right thing to do because something’s going to have to be done because he needs to be on one level. She did just apply for Habitat for Humanity so I don’t know. I’m not really sure about all that. They’ve been here for almost two years, and Carl was with us two years prior to that by himself.

For the foreseeable future, they will continue to provide a home for Carl and his family and provide the lion’s share of Carl’s care. They are so busy trying to stay on top of Carl’s ever changing care needs that they have little time to think beyond tomorrow. We just try to, we just do the best we can. Like I said, it’s been a process. It’s always a learning, every day with him because he has seizures, and it’s very time consuming

I Think As Long as I’m Alive, I Will Provide Whatever Care I Can for Him Similarly, Connie expects to provide care for the remainder of her life, but long term goals are on hold while they focus on the short term goal of obtaining fully accessible housing for her grandson and his family. Connie, age 57, cares for Andy, who is two and one-half and has cerebral palsy. Andy and his mother live with Connie and she cares for him at least 50 hours a week. She plans to continue that level of care as long as she is able. I think as long as I’m alive, I will provide whatever care I can for him. I really do. She needs me to watch him. I’m going to be the one taking him to school because I don’t want him on no handicap bus. I can’t get the wheelchair down the steps for, so I’m going to have to take him and then pick him up. So, for the near future, I still see me doing exactly what I’m doing. Maybe a little different but, still doing the same. If he’s progressing with physical therapy and his OT and all the other things that are coming along or will come along as he gets older, and my role is lessened, that’s fine, that’s fine. It’s just whatever he needs or she needs me to do for him, she knows she can count on me. That’s what I do. I’m his grandmother.

The one change she is desperate to make is to secure accessible housing. Despite constant efforts to force the managers to build a ramp, they refuse to do so. If Connie could afford a house that is accessible, they would move immediately. It would simplify their lives immeasurably. She could take Andy outside and on more outings as he, and his medical equipment, continue to grow heavier.

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Well, if we won the lottery, we would have a house that would be handicap accessible so I could take him out more. We could do things more outside and I could take a special needs stroller. . .and take him places like the park or children’s museum or places that I’d love to take him that I can’t right now. And, we’d go places. You know, whatever he needs. . .he would have it.

As researchers, we found it truly heartbreaking, and maddening, to witness how difficult daily life can be for families who, despite herculean efforts, are not able to secure accessible housing. Their daily lives would be so much easier, and richer, if they were able to come and go more readily. Moreover, their abilities to lay plans for the future would not be hijacked by their need to overcome daily logistical obstacles. I Worry About Him Losing His Assistance Through the Government For some grandparents, the most distressing part about making plans for future care involves access to government programs such as SS, SSI, Medicare and Medicaid. Our interviews are peppered with comments from grandparents who describe how benefits are cancelled or decreased for no apparent reasons. Having devoted enormous amounts of time and energy to securing and retaining benefits, they are understandably worried about what disrupted benefits will mean for their grandchildren when they are no longer available to help them with the red tape. Paula, age 66, cares for Mike, who is seven and has autism and an epileptic condition due to a rare genetic mutation. Paula and her daughter moved to another state to obtain the best types of social assistance for Mike, particularly with regard to nursing and medical care. Now, Paula is really worried that some of the state assistance programs might disappear as Mike is getting older. As he get bigger, I wonder if his seizure will get worse. I worry about him losing his assistance through the government. How about his Medicaid? Will he lose that? I’m worried about all that.

This Is Where He Needs to Be. He Needs to Be with Me Many grandparents expect to continue care no matter what the obstacles. Though they struggle to live on their meager annual income, Elsie imagines that she will be caring for her grandson for the rest of her life. Elsie, age 62, is legal guardian for Curt, now age 11, who has ADHD and learning disabilities. Though her total household income is less than $40,000, she currently provides all of his care and pays for all of his needs. She expects to remain his legal guardian, and provide all of his care, until he is an adult. He will stay with me, through high school graduation at least. I think he will be with me through his early twenties. My guess, he might go to trade school. I do think he will be able to live independently, eventually. He tells me he is going to buy a big house and put in a pond so he can fish. He says I can come live with him. We really do have a good relationship, he feels safe and secure with me. Any mention of living with mom and dad upsets him greatly. It is clear that his parents love him and he loves them, and I want to keep that relationship going. But this is where he needs to be. He needs to be with me.

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I Think We Will Have a Lot of Advocating for Ray, People Are Still Naïve to Down Syndrome For some grandparents, watching over for their grandchildren for as long as they are able includes much more than daily supervision and care, it also means advocacy. Ina is one of several grandparents who feels the need to educate the educators and health professionals so that they too can do a good job caring for her grandson. Ina, age 46, has disabilities and is no longer able to work or drive, yet she and her husband care for their three year-old grandson, Ray, several times a week. They expect to continue that pattern for as long as they are able. Additionally, she expects to have to keep educating people such as his next doctors and teachers. I think we will have a lot of advocating for Ray, people are still naïve to Down syndrome. But my daughter is very positive, she does not dwell on the negative. He has a great mom and dad. He has good health, no heart issues, and most tests have been negative. He is perfect. But they will always have to educate their doctors and teachers, always be ahead of them. At pre-K right now he is in with five years-olds, and doing well. He is doing well socially. The teachers know sign language and the other kids are learning it too. But what if the next teacher does not know sign?

With all of His Medical Problems, We Have Been Just Thinking a Month at a Time Like many grandparents, Rae expects to continue caring for her grandson as long as she is able. But she is so consumed providing daily care now that it is hard to find time to periscope up and look ahead to the future. Recently unemployed, she provides a lot of care for all of her grandchildren, and particularly for her three year-old grandson Paul, who has Down syndrome and immune deficiency. She is uncertain about his future health and education, but she is certain that she will continue to provide help every Tuesday, and as needed on nights and weekends. I hope for Paul medically that we continue on a healthy path. I hope that he is able to start school and just flourish as a little boy. I hope he can learn from his older siblings, and start walking and talking. I’m planning to keep doing every Tuesday until he goes to school and then we will see what they need from us. The school that he would go to is just few blocks from their house. We are so lucky. Maybe we will take him after school. We don’t think that far in advance. With all of his medical problems, we have been just thinking a month at a time. Who knows? We can always help on weekends or at night. I bring supper over there a lot now, and cook for the family so they have a hot meal when they get home. I will keep doing that.

If They Need Us We Will Be There for Him Unsure what the future holds, Heidi is also prepared to continue providing care for the rest of her life. Like many of the grandparents we interviewed, Heidi says they simply do not know what the future holds for Max, age four, or for the extended family. She does not know how much help they will be asked to provide, but she does know they are prepared to give it readily. If they need us to, we will help. We don’t know whether he will be able to live on his own. Right now he exceeds everything they have set out for him. But that might all stop. If they need us we will be there for him. One aunt will take the kids if something happens to the parents. They even got a family dog that is good with Down syndrome, just to be ready.

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I Will Definitively Help Take Care of Leila As Long as I Live One can’t help but wish that all of the grandchildren in this book had the kind of support that Tessa’s granddaughter has. Not only does Tessa have plans, she has the resources to put them into place. Tessa and her daughter have already arranged their living, and now are working on a college plan, that will maximize Leila’s independence. Tessa, age 61, cares for Leila, age six, who has Down syndrome. They share a house, with Tessa living upstairs and Leila and her mother paying rent to live downstairs. I will definitively help take care of Leila as long as I live. But I won’t live forever. One of the main reasons we bought a two family house is that eventually, she could live in the upstairs. She could have some personal freedom when she is older, and still be supervised by her mom, who lives downstairs. She will be able to have some space and supervision.

Though Leila is just six, Tessa and her daughter are already thinking about college programs and adult independence. We have big plans for her. We want her to go to college, St. Rose has a certificate program. We want her to have a job and live on her own, with her mom downstairs. The sky is the limit for her. This year has been a great year for her, she has picked up a lot of language and matured. She can do whatever she puts her mind to.

Tessa has a long legacy of travelling with the military and with her extended family. They continue that legacy with Leila, taking her everywhere they want to go. We travel a lot. She has been on several cruises to several countries. We try to expose her to everything. Where we go, she goes. We take her everywhere. In the military you travel. My kids travelled everywhere. Leila does too. We don’t treat her like she is a special needs person. We treat her like she is a person. The Downs comes after.

I Wish We Had Bought a House in Their Neighborhood In the long run, Linda expects to continue providing care for her grandson as long as she is able. In the short run, she is preoccupied with whether she should move yet again to be even closer to him. She notes that when they all moved to a new state, and a much larger city, to arrange better education, medical care, and services for George, who is five and has Down syndrome, she and her husband bought a house 20 minutes away from George’s house. Increasingly, particularly during rush hours, that distance is becoming a problem. But the thought of moving again is overwhelming. My husband and I talked about this yesterday at the beach. We live 20 minutes from them. Next year George can ride the bus home but then someone has to be at the home when he gets there. I wish we had bought a house in their neighborhood. And no one has addressed this. The elephant in the room. He won’t be able to stay at home alone for an hour. When his little brother gets older, in middle school he would be ok for that hour. Till mom gets home. But George will never have that ability. We have only been in this house for a year and half. It sounds so overwhelming to me to sell this house and move again. But it comes up.

Linda would like to talk about this elephant in the room. While she dreads making an additional move closer to George and his family, it would be easier to continue to provide care over the long run.

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I don’t have ties to the neighborhood. It would be so much easier to live near them. . .I would not have to stop my day, and drive 20 minutes over and meet his bus. I think he is going to need us forever, and I think she is going to need us forever. She will be working for years, and she will need us to meet the bus. But to drive 20 minutes over and back every day to meet the bus.

The decision weighs heavily on her and during the interview she asked my advice. I did not offer any advice, but I asked her to talk me through her options. She fears the commute will only get worse as the city becomes more congested. Should we move? He will need us at least till he is 21. And she will be working. That is a lot of years. That is my big question. Do we move so we are close to them. This is a huge city with lots of constant traffic. We are both so unsure. The older we get the more likely we will have an accident. And it will get busier. The city is growing. More traffic.

I Worry, What Will You Do if This Happens, but the Thing Is, It’s Not Really My Problem, It’s Their Problem A few grandparents were quick to point out to us that not only do they not know what their grandchildren’s needs will be in the future, they are not the parents and do not make the plans for future care. As a result they expect to be needed, and expect to be providing care, but they do not really know anything for sure. Chris is worried about just how much care she will be expected to provide, especially given that her husband is on the heart transplant list. Chris, age 67, cares for Wendy who is ten and diagnosed with anxiety disorder and has autistic symptoms, and Mark who is seven and diagnosed with ADHD and Oppositional Defiant Disorder. Future plans for caring for the grandchildren are complicated and worrisome. As Mark grows stronger, his violent outbursts are becoming more than she and her husband can handle. Moreover, her husband is on the heart transplant list and if gets a heart, they will be unavailable for grandchild care for a few months. Looking ahead, if he was easier to take care of, Mark, I could see us taking care of him for a long time. And I could have Wendy around. She is easier. But Mark is hard. So hard. But what is my daughter going to do when we get the call that there is a heart for dad. I will have to care for just dad for six to eight weeks if gets a transplant, so what will my daughter do? She says they will work it out. I worry, what will you do if this happens, but the thing is, it’s not really my problem, it’s their problem. These are their kids. I did this with my own kids and I don’t need to be doing it for my grandkids.

Looking even further ahead, it is not clear whether either of the grandchildren will ever be able to live independently. Currently, Mark’s violent outbursts are the most absorbing concern, but over time, Wendy’s social anxiety may become more pronounced. The future is uncertain. I think there is a better chance that Mark will be able to live independently than Wendy will. I’m not sure she will be independent. Ever. My daughter and I have talked about this many times. Both are adopted. Wendy weighed just one pound and six ounces at birth, so we are never sure if her problems are linked to low birth weight or autism. Or her anxiety disorder, which is diagnosed. . . Many issues.

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But the future for Chris and her husband is quite clear; both are in declining health and are increasingly unable to muster the physical strength needed to provide care for their grandchildren with disabilities. I Don’t Know What Will Happen for Me, or for My Granddaughter In a sea of uncertainty about the future, Candi knows only one thing for sure. If she is needed, she will provide care. Candi, age 61, cares for Aly, age 12, who has ADHD and asthma. Though Aly is in the midst of a four-month trial to see whether she can live with her mother, who lives ten hours away, thus far, virtually nothing has gong according to plan. And as she looks to the future, Candi has no idea what the plan will be for any of them. My daughter had miscarried four times before she had her. I had always wanted a grandchild. Then when she was pregnant was on drugs, we could not believe it. So this granddaughter has been our priority. I never am not thankful for her. I would have chosen a different path for her. I would have chosen that her mother never did drugs. Her mother is not in a good financial place. Now since my husband died, neither am I. I don’t know what will happen when I get older. I don’t know what will happen for me, or for my granddaughter.

Though Aly is currently living at her mother’s for four months, Candi is wondering whether she will be moving back and whether in time she will be able to attend college. I just really hope she can go to college, it would be an awesome thing for her. But she has issues. Will she be able to continue schooling? She wants to come here for college. I will always care for her. I will always be her mom. I’m close to all the schools, if she would come home today.

I Will Take Care of Him As Long as the Need Is There Already 66, Anna expects to be helping to care for Jason, age seven, who has Down syndrome, as long as her health permits her to continue doing so. She is particularly glad that they live in a state that provides public schooling for those with disabilities through age 26. I will continue to go once a month as long as I’m able. Here, his school goes to age 26 and he will stay in there, it tries to prepare them for life, and they graduate. So he will learn how to cope. I will take care of him as long as the need is there and I think the need will be there. I think he will continue to blossom there. And I will continue to go as long as I’m able.

I Have a Feeling He Is Going to Live with Her the Whole Time It is difficult to think about providing care for many years to come when your own health is precarious. Hanna, age 71, cares for Danny, who is 19 and has autism. A breast cancer survivor, she worries about all members of her immediate family. Hanna’s daughter is divorced and Hanna is worried that she will never find a future mate because she thinks that Danny will stay with his mom forever. Hanna is happy to help care for Danny as long as she is able, but she cried as she told us her concerns about her own longevity and about her daughter caring for Danny forever. I worry about my daughter more than I worry about him. Because I have a feeling he is going to live with her the whole time. He is going to have a very difficult time moving out.

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I Wonder What’s Going to Happen to Her When Her Parents Are Gone For some parents and grandparents who fear they will be unable to provide care for enough years, the long term solution is for the siblings to become the guardians. Maureen is one of several who felt that her other grandchildren would step up and care for her grandchild with a disability when the time comes. Maureen, age 76, cares for Madge, who is 20 and has autism. I wonder what’s going to happen to her when her parents are gone. Not really so much. Her siblings are superb especially her brother who is older. At some point when she will turn 21 and become an adult, her parents will have to sign legal guardianship paperwork. Her siblings say they will do that for her. Actually both siblings’ criteria who they date is that the person has to like Madge. If they are dating someone who doesn’t like Madge they break it up. Her brother says that he will take care of her.

One Thing I’m Worried Is That I’m Getting Old. If I Die, How Is That Going to Affect David? Several grandparents are worried what the timing of their own deaths will mean for their grandchildren’s care and rest their hopes on the siblings. Jean, age 70, travels every weekend to help her daughter and her grandson David, who is six and has Down syndrome. Jean plans to continue caring for David as long as she is able. But she is worried about David’s future and has been training his siblings to care for him when she is no longer around. That’s what we are trying to do not just for David but for his sisters too. They are the ones, eventually at some point of time, they are going to have to take over and watch out for David. We don’t know how much he is going to need them. Overall, these children will grow up knowing that family is very important. . .Of course I worry about him once he gets older. Sometimes he has problems expressing himself even though he understands really well.

She is worried about how David will handle her death; will he be able to grieve appropriately? Her only consolation is that the siblings will step up and provide good care. One thing I’m worried is that I’m getting old. If I die, how is that going to affect David? You know. I worry about that. It bounds to happen someday. I just hope that it doesn’t happen until he is an adult. Until he is old enough to understand.

If Anything Ever Happened to Me, Where Would These Kids Go? Understandably, custodial grandparents are the most concerned about who will care for their grandchildren with disabilities if they are no longer able to do so. Violette is deeply worried about what her death will mean for her five custodial grandchildren. Violette has diabetes and a bad back from an injury she sustained as a nursing assistant. I’m constantly worrying, if anything ever happened to me, where would these kids go?

There really is no plan B; no one else, and nowhere else, to send the children if she becomes to disabled or dies. Moreover, the children have had enough loss and disruption already. Losing Violette, their key source of stability, would be very upsetting to them. Some of Violette’s grandchildren have experienced abuse and neglect from their mother. Some of them have gone through foster homes and have

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not had the best experiences. Violette is constantly worrying about her ability to continue to provide care because of her precarious health. I Worry About Nico’s Future Certain that their custodial grandson will always need supervised living, Carole is also preoccupied about the consequences of her own death. She has developed some tentative plans in case she becomes too disabled or passes before he is an adult. Carole, age 74, has custody of three grandchildren, including Nico, age 11, who has autism. I worry about Nico’s future. We were in the process of putting a will together. My ex and I tend to do things in tandem because we have kids together. We talked to the woman who was his daycare provider when he was little to take care of him if anything happens to me. I get concerned over that until he will be old enough to go to a group home. Her and her husband agreed to take care of him. He will never be able to be independent. He needs a supervised arrangement.

The Bottom Line Is That They Are So Worried About Who Will Take Care of Them if One of Us Dies Sometimes it’s not just the grandparents who are worried about what will happen when they die. In Donna’s case, her custodial grandchildren, Tony age 11 and Sally age ten, are already expressing similar concerns. Donna and the grandchildren are keenly concerned about the future. Though she is only 63, Donna and the grandchildren all think she is old. The children have endured too much loss and heartache already; she worries that she will not be able to bear more. The really sad thing for the kids is that they know I’m old. If I get sick, especially the daughter, she just freaks out and stressed. The bottom line is that they are so worried about who will take care of them if one of us dies. It is so sad that children who experience trauma and then are adopted by their grandparents. Their number one concern is who is going to take care of them if we die. This has been phrased to me by these children in their own words. My 11 year-old, when he was nine, he had started this saying “Grandma I need to know who will take care of me if something happens to you.”

Donna and her husband are mortified that the grandchildren are burdened with these worries. Donna is laying out a trust and a care plan to quell everyone’s concerns and assure a smooth transition should the need arise. This is something that young children should not need to worry about. Life happens, and it is something we have to face. We sought out an attorney to do a will that included a trust and the thing is we had to ask the tough question of our eldest son asking if he will step in and take care of these children. They don’t want to do that.

It’s an Eventuality That She’s Going to Need Another Guardian Before She’s Eighteen Dying before her care work is done is a concern that many of our grandmothers expressed, particularly if they are custodial grandparents. Because she knows she is likely to die while the grandchildren still need her, Jacki tries to foster independence. At age 65, Jacki and her husband adopted her nine year-old granddaughter, Mona, who has ADHD. Having Mona with me, I’ve been much more anxious about money and putting money aside for her. At some point, when we do our will, we’ll have to decide how we divide our

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savings. . . It’s an eventuality that she’s going to need another guardian before she’s eighteen. I always told her mother that if she straightens herself out that I’ll put in the will that she’ll be her guardian. As of today, that hasn’t happened.

Jacki is concerned about being the best mother she can be to Mona and she is hoping that Mona will be old enough before she dies. But she can only do so much. The thing I fear the most is not living long enough to get her to a point that she can proceed with some balance and self-assurance in her life. It is something she worries about, that we will die, and she will be alone. You do what God puts on your plate. We don’t know the story of our lives, it’s why life is a surprise.

Never Ending Care Work To be included in our study, all of the grandparents have to be providing at least some care to their grandchildren with disabilities. Some are providing intermittent care while others are providing around-the-clock care. Additionally, many of them are also caring for their other grandchildren, notably the siblings of the grandchildren with disabilities. Caring for several grandchildren at once always raises the workload, and sometimes raises the tensions, for grandparents. Many they are often exhausted by the effort. Many are also caring for others. It might be their partner, adult children, or an aunt, but most often it is their own aging parents. Several said they were the sandwich generation, caught in middle, caring for many generations at once. For some the care work is simultaneous while for others it is sequential. For many it is never ending. When we asked them to contemplate their futures, caring for grandchildren with disabilities, a few predicted some forms of independence but most predicted that they would continue providing care as they are at present. Nearly all expect to continue caring for their grandchildren with disabilities for as long as they are able. But their own morbidity and mortality raise serious questions about how many more years of care they can provide. Our study builds on others that show that a key source of anxiety for grandparents caring for grandchildren with disabilities is whether they will manage to remain in good health long enough to provide care for as many years as needed.18 While some grandparents have multiple long term plans in place for the ongoing care of their grandchildren with disabilities, others are too burdened and exhausted by daily responsibilities to lay out plans for the future. Some do not have any possible back-up plans. Some have too few resources to put a long term plan into place. And some pin their hopes for future care on the brothers and sisters of their grandchildren with disabilities. The grandparents we interviewed are providing intense care work not because they expect reciprocation, but because they are primarily women providing for the otherwise unmet needs of their family members. As we turn to the impacts of care work in the future chapters, we see support for cumulative inequality theory. Those with sufficient resources, good health, and fewer care demands tend to absorb carework with few adverse impacts; those with

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fewer resources and greater demands tend to suffer the most negative consequences for their financial, social, emotional, and physical wellbeing.

Notes 1. Harrington Meyer (2014). 2. England (2005). 3. Harrington Meyer (2014), Folbre (2012), Glenn (2012), Krantz-Kent (2009), NACCRRA (2008), Bianchi et al. (2006), Chesley and Moen (2006), England (2005). 4. Grundy and Henretta (2006). 5. Harrington Meyer (2014). 6. Vanegas and Abdelrahim (2016), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010), Hewitt et al. (2010) and Priestley (2004). 7. Vanegas and Abdelrahim (2016), Crowther et al. (2015), Martinez et al. (2012), Ogston et al. (2011), Anderson and Turner (2010), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010), Hewitt et al. (2010), King et al. (2009). 8. Vanegas and Abdelrahim (2016), Martinez et al. (2012), Ogston et al. (2011), Anderson and Turner (2010), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010), Hewitt et al. (2010). 9. McNee and Jackson (2012), Heller et al. (2011), Gardner et al. (1994), Schilmoeller and Baranowski (1998). 10. Vanegas and Abdelrahim (2016), Crowther et al. (2015), Martinez et al. (2012), Ogston et al. (2011), Blacher et al. (2010), Griffin et al. (2010), Hetherington et al. (2010), Hewitt et al. (2010). 11. Casper et al. (2016), Suitor et al. (2015), Cherlin (2010). 12. Polenick et al. (2017), Fingerman et al. (2015), Folbre (2012), Baker et al. (2008), Harrington Meyer and Herd (2007), Pavalko and Henderson (2006), Casper and Bianchi (2002), Arber and Ginn (1995). 13. Folbre (2012), Glenn (2012), Krantz-Kent (2009), NACCRRA (2008), Bianchi et al. (2006), Chesley and Moen (2006). 14. Mehta and Myrskylä (2017), Harrington Meyer (2014), Folbre (2012). 15. McNee and Jackson (2012), Heller et al. (2011), Gardner et al. (1994), Schilmoeller and Baranowski (1998). 16. Priestley (2004). 17. McNee and Jackson (2012), Heller et al. (2011), Gardner et al. (1994), Schilmoeller and Baranowski (1998). 18. McNee and Jackson (2012), Heller et al. (2011), Gardner et al. (1994), Schilmoeller and Baranowski (1998).

Chapter 11

Managing Views on Disabilities

Among the many tasks grandparents have when caring for their grandchildren with disabilities, one that can be particularly exasperating is managing how people respond to disabilities. Despite the successes of the Disability Rights Movement, ableism is commonplace throughout the US.1 People with disabilities are often subjected to overt and covert discrimination, excluded, marginalized, and bullied. Negative reactions are often shaped by whether disabilities are visible, the age of the people with disabilities, or the severity of the disabilities.2 Dealing with public reactions is part of leaving the house. Some people are warm, friendly, and accepting. Some look away. Others stare or make rude comments. Most, but not all, of the grandparents we interviewed had put substantial thought into developing a restrained, often educational, response to any signs of disrespect. It is emotional work, constantly having to decide whether to acknowledge and whether to react to other people’s views on disabilities. It is yet another type of care work and, like most care work, exhausts grandparent time, energy, and patience.

Managing Others’ Views on Disabilities People with disabilities have long been targets of a wide range of bullying and discriminatory behavior. In scholarly works on parental experiences of their perception of negative attitudes and reactions they face because of their children’s disabilities, parents report negative attitudes, stigma, and pejorative labels.3 Parents of children with disabilities routinely experience staring and whispering from onlookers. They also experience social exclusion and discrimination. The social construction of disability as an abnormality unsettles the norms of social interaction and engenders negative reactions from many onlookers. Studies of grandparents suggest they sometimes face similar adverse responses. We need additional research

© Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_11

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to better understand how grandparents navigate and manage these responses. In a survey conducted by the Interactive Autism Network, some grandparents voiced their frustrations with a world hostile to their grandchildren’s unique ways and differences.4 One grandmother commented, Our grandson will soon be nine and I worry that other children will make fun of him and hurt his feelings. I would like to see more information given to the general public so that they can understand these beautiful angels among us. I realize it's uncomfortable to witness a temper flair up or meltdown, but if people were informed that this behavior is not a brat having a temper tantrum but a child struggling to cope with outside stimulus, it would be helpful to the caregiver to have that silent support instead of judgmental looks.

Positive Views Some people are warm and welcoming when they encounter children with disabilities, especially when the grandchildren are young and are accompanied by a parent or grandparent. Despite the positive views, some grandparents worry about the future, as their grandchildren grow older and are increasingly out in public alone. Grandparents worry about how their grandchildren will fend for themselves. Nobody Has Ever Said Anything Unkind to Him or to Me Some grandparents are not experiencing negative reactions, particularly when the children are younger. Jean, age 70, cares for David, who has Down syndrome. She says his disability is not very obvious until he starts talking. He is only six years old and, thus far, people have been very kind. People’s reaction, I think is very moving and warmth. People tend to respond to him in a lovely way. Sometimes, I would say, “Say hi, David.” He would wave to them and say hi. He would talk to them. He doesn’t always have that appearance of Down syndrome. It depends on how he is holding his face. Most people probably wouldn’t even notice. It is when he talks. Because of his muscle tone in his face, he holds his mouth in a different way. Then you can tell he has Down syndrome. I have never felt uncomfortable. Nobody has ever said anything unkind to him or to me.

Jean has heard stories of people being rude to children with disabilities. This has not been the case in David’s interactions. One of Jean’s major concerns, however, is when David reaches the teenage years and peers might be more damning. You hear about people being rude or obnoxious but I never experienced it. I don’t know what would happen when he gets older, when he is a teenager.

No One Has Ever Been Discriminatory or Mean or Said Anything Similarly, Tessa, who is the 61 year-old, white, grandmother of Leila, a six year-old Black child with Down syndrome, says that they go everywhere together and in their small town everyone says hello. She is very social. No one has ever been discriminatory or mean or said anything. No one has ever stared, nothing.

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But I Think People Got Used to Him For some families, people’s reactions are some of the first indicators that their grandchildren might have disabilities and they do not necessarily view the scrutiny in negative terms. Hanna, age 71, cares for Danny, who is 19 and has autism. When Danny was little, he did not respond to people when he was addressed. At the beginning people did not know. They would say, “Why isn’t he responding to me?” People would come here and Danny would be watching TV. They would call him, no answer. That’s when we thought that he had a hearing problem.

Hanna’s daughter and son-in-law took Danny to the pediatrician. After many diagnostic tests and treatments, he was later diagnosed with autism. Danny had difficulty interacting with people and when in public he would start shaking. Danny’s family tried many strategies to help him interact with people and shake less in public. He shakes a lot. You know the shaking calms him. But I think people got used to him. Then his mother gave him something to hold. He would hold it in his pocket. My husband gave him worry beads to hold so that he controls his shaking. He still does when he is very excited, or very happy. As far as parties and family events, she did something very good. She gave him a camera. This way it allowed him to go to people and take pictures, to intermingle and not have to have a conversation with somebody but to be part of the party.

As he has grown older, Danny has been able to interact more readily at family functions. Hanna notes that Danny has stopped shaking as much. In fact, he has become the photographer at many of these events. Operating a camera somewhat alleviates his social anxieties and deflects the onlookers’ gaze from him.

Negative Views Some people are neither warm nor friendly when they encounter children with disabilities. Grandparents told us that when they are out in public with their grandchildren with disabilities, sometimes people stare or make rude faces. Sometimes they offer looks of pity. Other times they look away, rendering the disabilities, and the people with the disabilities, invisible. Onlookers tend to react more adversely when grandchildren are making noise, having a tantrum, or requiring accommodations. Grandparents have little patience with any of these reactions. They do not welcome hostilities or sympathies, and they certainly do not want to become invisible. They do, for the most part, welcome questions. Their focus is usually not on how they feel about unwelcome reactions, but how their grandchildren might feel. They are particularly concerned about how their grandchildren will handle such reactions when they are alone, at school, or in other social settings. He Wears His Diagnosis on His Face Some grandparents say that reactions vary by generation and that older people tend to be more uncomfortable than younger people around disabilities. Paul, age 69, cares for Alex, who is six years old and has Down syndrome. Paul says he

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does not pay attention to people’s reactions when they see Alex. Paul highlights the differences between different generations of people concerning disabilities and finds that older adults are not as accepting as younger children. Paul feels that people’s reactions stem from their ignorance and that can easily be changed into positive views when they see the joy that exudes during his interactions with Alex. When I was younger that would have been a concern. I think now. Remember this term too, comfort zone. Many of my contemporaries do not feel comfortable around a child who has disability. It is because of ignorance. They don’t know. When I’m with Alex, our relationship is so normal. That’s what they first begin to see. So within a split second, they can look beyond. He wears his diagnosis on his face. He has Down syndrome, he has physical obvious trademarks. You get beyond that quickly. The other kids, they stare at him for a moment but a quick moment. Kids get over it quick, adults are a little more intense. When they see the relationship, this is the joy. Then they can start talking.

People Will Look and Smile, and See It and Look Away Jill also thinks that reactions vary by generations. She is most offended when people look away. Some disabilities are more visible than others and elicit more responses. While grandparents do not like it when people stare, they also do not like it when people look away because they feel that makes the disabilities invisible. Jill has devoted a lot of thought to improving people’s reactions to, and word choices about, disabilities. Jill, age 48, cares for Minnie, who has Down syndrome, a heart defect, and an intestinal disorder. Minnie has already undergone several surgeries and as more symptoms appear, her disabilities become more visible. In the beginning, she didn’t have the nasal tube and G Tube, and people were forthcoming with praise and love and, “Oh, she’s adorable!” and, “Look how little she is.” And things of that nature. As soon as the NG tube went in, and you can see that she has a disability or something medical going on with her, no one says anything. It completely stopped, and we have absolutely noticed. People will look and smile, and see it and look away, now. Absolutely. It makes me feel awful. . .It’s been really hard to watch.

Jill struggles internally about how much she should explain, particularly with older onlookers. Jill sees generational differences in how comfortable people are being around people with disabilities. I find that I feel like I am making excuses like sometimes I have to stop myself and, you know, not want to try to explain that this is just a kind of random thing that happened—it’s not anything we did. Does that make sense? It’s, I think it’s a generational thing. I think for my generation, because we weren’t around children, we were segregated from children that had disabilities, and since we were in different classrooms, we didn’t see them. We don’t have the ability to handle things like that as much as the younger generations do.

She also sees pronounced generational differences in the language people use to talk about disabilities. She says older people will use the words normal, or not normal. She has become more sensitive to word use since Minnie was born. That’s one I notice, people use the word normal around here where we try to use typical with her. I notice a lot of that. I notice a lot of words that I didn’t notice before. I had someone the other day use the word mongoloid that I hadn’t heard in probably 30 years. It was like, wow. It’s things I never noticed before, now I notice them when people do them, so. Then you

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don’t want to be rude by correcting them, but on the other hand, you don’t want them to not understand.

Now as an advocate, she wishes she could help people see that Down syndrome is not something they should be trying to eliminate, rather than having a child or grandchild with Down syndrome might enrich their lives. It shouldn’t be, the whole point behind Down syndrome, at this point, right now is to get to the point where people don’t look at it as a disability, and not even necessarily not as a disability, but not as one that changes your life. Like the whole thing in Iceland where they’re trying to wipe it out, you know, you’re taking away these people that are wonderful people, you know? I was the same way. I was very uncomfortable around people with Down syndrome even though I have cousins that do. I never felt comfortable. And now, just having sat and talked to them and spent time with them, and my life is so much better with them in it, and it’s crazy.

I Think I Would Rather Them Ask Me than Just Stare Connie is most offended when people stare. Connie is one of many grandparents who wishes that instead of staring or looking away, people who just ask questions. She would be happy to tell them all about her grandson who has cerebral palsy. Connie, age 57 cares for Andy, who is two and one-half and has cerebral palsy. Connie and her daughter do not take Andy out often because he requires a lot of heavy medical equipment and their apartment building does not have a ramp. But when they are out, a lot of people stare. I don’t think people really understand that what it really takes to care of a child that has special needs. No matter what that special need is, they really don’t! You get a lot of people, not a lot, but you get people that will look at you, your stroller, it’s heavy, it’s bulky, it’s really big. And, they’re like, you can tell they’re like, what kind of stroller is that and why is this kid in it . . .Stop staring. That’s your first reaction, or that’s what you want to say, stop looking at him! He’s a kid. . .I think I would rather them ask me than just stare. To me, that’s kind of rude. If you’re looking at him and you’re curious, say something. We’re not ashamed that he is CP and is a special needs child. Say something, it’s not going to hurt my feelings.

She Can’t See a Lot of Things That We Go Through Because She Don’t Live It Generally grandparents do not mind when people look or ask questions. They see a lot of people with disabilities out and about. They would rather people see them than regard them as invisible. For Arlene, the most frustrating reaction is when people do not seem to have any idea of what life with disabilities is like. Arlene, age 53, cares for Carl, age eight, who has cerebral palsy. As Carl grows, Arlene says it is becoming more difficult to maneuver him into places that are not accessible. When they are able to get him out to events, he really enjoys them. In the past, it was okay, there are some places that aren’t handicap accessible, but for the most part, he was fine being when he was small enough to carry around. I’d have to say, you know, everybody’s pretty, pretty good about it. There’s, you get the stares, and, you know, some people ask questions. But, I think it’s getting to be more, seen more nowadays and people with disabilities are taken out and they take them grocery shopping, shopping and to different things. Like, we’ve taken him to a couple things, like we’ve taken him to Disney on ice and stuff where there’s handicap accessible seating, and stuff like that. Carl enjoyed that, he did.

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Arlene says that grandparents who do not have grandchildren with disabilities probably do not even have to think about issues like accessibility. Unless you live it, she says, you might be oblivious to the struggles. She would rather people see, and acknowledge disabilities, and have some empathy for the challenges that might accompany them. For grandparents of grandchildren with disabled grandchildren it’s pretty much the same. I guess you know what they know, certain things like if you need to go to the restroom and it’s not handicap accessible, and they don’t have changing tables, it’s pretty hard. A grandparent with an able-bodied child probably wouldn’t even enter their mind, something like that because they just don’t even have to deal with it, you know? I think a lot of people that don’t deal with some of these issues that we have to deal with, with disabled children, they really don’t even have a clue. Like, my other daughter, she only has the one child, she can’t see a lot of things that we go through because she don’t live it.

People Looked at Us Like What Are You Doing to That Kid or What Is Wrong with That Kid? Taking children with disabilities on outings can be more challenging if the children tend to make noises or act out and onlookers are worried for the child. For example, Joy, age 60, cares for one year-old Zak. For their outings, Joy would place Zak in a bulky adaptive stroller, and carry his feeding tube supplies as well as oral food, diapers, and extra clothes. They rarely had any trouble when they were on outings, but she remembers one rather challenging day when Zak wanted out of the stroller at the grocery store. People were very positive. The only negative time happened once when he did not want to sit in his adaptive stroller, he wanted to be carried. He has only child syndrome. If he hollered we would pick him up and he knows that. At the grocery store we were trying to get him to stay in the stroller and he screamed, and then we passed him around between the three of us, and he was having no part of having a good day at the store. So in that case people looked at us like, what are you doing to that kid or what is wrong with that kid? But otherwise he was good. He is a good kid. People were receptive.

People Started Giving Us Funny Looks Violette finds herself in similar situations when she takes her grandchildren out shopping. Violette, age 46, has custody of give grandchildren, all of whom have disabilities. During one outing, when two of the children were misbehaving, some onlookers thought Violette and her boyfriend might be abusing them. Sometimes I think people think that they are my kids that make me feel good and young. But other times, when they go through their temper tantrums it can be very difficult. Once I was in Walmart for three hours when two of them were acting out and I think people thought that we were abusing them. People started giving us funny looks.

She Did Not Like to Have People See Her Wearing Braces Some grandparents are particularly concerned about how people’s reactions impact their grandchildren. Kelly, age 72, cares for Maya, who has cerebral palsy. Maya wears a brace to help with ambulation. Kelly is not bothered by people staring at Maya, but she is bothered by the fact that Maya has become sensitive to people’s gaze.

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It did not bother me, it bothered her. She did not like to have people see her wearing braces. So she used to go out of her way to always wear tights over the braces so people, especially kids, wouldn’t see her braces and ask her what’s wrong with her and that bothered her a lot. Therefore, it started to bother me. Yes people’s reactions did not bother me because I’m used to it as you can see my husband is in a wheelchair so we used to that.

I Wrote a Letter to the Company and Asked for Sensitivity Training for Their Employees Grandparents find that some businesses are more welcoming than others. Several grandparents told us they forget their grandchildren have disabilities, but sometimes when they are out in public, the public reminds them. When that happened to Ina, she was quick to register her complaint with the owners. Ina, age 46, cares for Ray, who is three and has Down syndrome. She says he is the easiest baby in the world and she forgets that he has a disability, but sometimes when they are on an outing others remind her. We don’t really see him as having Down syndrome, we forget about it most of time. We will be surprised when someone says, “Oh, does he have Down syndrome?” Once with my daughter at the restaurant we asked for a table on the patio and the hostess asked, “Oh is that because he has Down syndrome?” And it was because it was beautiful outside, 70 degrees and sunny, not because of Down syndrome. I wrote a letter to the company and asked for sensitivity training for their employees. I mean, come on.

The Fact That Sara Is Different Turns Him Off Sometimes it is the grandparents themselves who have trouble responding positively to disabilities. Cindy says her husband is much more interactive with their grandchildren who do not have disabilities. Cindy, age 69, regularly cares for Sara, who is four years old and has autism. Cindy says Sara’s parents were reluctant to accept the diagnosis and obtain therapies that the doctors ordered. While her husband was angered by their slow response, his own response to Sara since her diagnosis has cooled considerably. My husband does not help with Sara. . .I will go see the other grandchildren, the two who don’t have autism. And he might come. He is much more laid back. I see him interacting with my two grandchildren who are not autistic. They play, he is more involved. With Sara, when she was young, he played with her a lot, but once she stopped responding, he really backed away. I am sorry to say this. But if he does not get a response he gives up. He plays with the other grandkids. And he played with our own sons. He is a good dad, but the fact that Sara is different turns him off. He does not come with me when I go up there. And when they come to our house, sometimes I will babysit her here and they bring her here, and even then he interacts with her very little.

Cindy is endlessly frustrated by her son and daughter-in-law’s reluctance to accept Sara’s condition and provide her with needed treatment. She is similarly frustrated by their and her husband’s lack of commitment to playing and talking with Sara, even when she is nonresponsive. But she accepts it as best as she can and keeps her own focus squarely on Sara’s development.

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I have to accept him as he is, what can I do? I see him much more involved with the other grandchildren who don’t have autism. We don’t talk about it much. He was disgusted at my daughter-in-law’s response when I said that I thought Sara had a problem and that they did not go get help, he was angry by their response. I think it is all related.

The Last Time She (Her Mom) Saw Her Was About Five Years Ago Joyce also struggles to manage some of the reactions by her own family members, notably Mindy’s mother. Joyce, age 61, and her husband care for their coresidential grandchild, Mindy, age 13. Mindy has DiGeorge syndrome and her symptoms include seizures, learning disabilities, and difficulty speaking. Until she was 11, Joyce did not take Mindy on many outings because she would have meltdowns. Having outgrown those, Joyce and Mindy are out and about much more often now. Joyce says most people, but not all, are kind. I don’t think that they know it when they look at her. But, they know it when she starts talking. She can talk regular, but then she just wants to talk and it just turns into non words. It’ll turn into something you can’t understand. I’ll give you a good example. Yesterday, she had to have an x-ray. And she was fine. And, I was telling her that they were going to take a picture of her knee. She had to know to smile. And then some lady across from us was sort of grinning so she knew then. I said, “Make sure you have your knee smile.” So, in stuff like that they know. Most of the time, people are, she’s kind of very friendly in the grocery store. She’ll want to high five people. Most people are very kind.

By contrast, once a woman at a store reprimanded Joyce for Mindy’s behavior. Perhaps because Mindy’s disability is less visible, the onlooker did not realize she had a disability. Joyce considered a few different responses before she settled on a calm, educational approach. I can think of time when we were in the drug store, and Mindy was much younger and she was acting out, and some lady told me if I didn’t get a handle on her now, I’d have a heck of a time with her. I told her to F off—no (laughs). No. I told her she had a chromosome deletion and, you know, we’re working on it.

By far their biggest challenge is dealing with Mindy’s mom. When Mindy was born with health complications, Mindy’s mom stopped caring for her. For example, she did not want to feed her though the feeding tube. The court declared her unfit, and Joyce and her husband became Mindy’s foster parents, then her coresidential grandparents. Joyce says they never prevented Mindy’s mom from seeing Mindy, but she quit visiting. Joyce has been alternately perplexed, dismayed, and angry about Mindy’s mother’s negligence. The last time she (her mom) saw her was about five years ago. . .she never calls or anything. . . What happened was, that we let her come over, and then, the last time, she asked if she could come the following week and we told her yes, and I told Mindy, “Someone’s coming to see you!” And, nobody came. So that kind of ticked me off, so. I guess if I would let her, I wouldn’t tell Mindy somebody was coming to see her.

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Educational Responses When grandparents receive hostile or pitiful looks, or when they watch people look away as if they could not see them, grandparents have to do the emotional work of deciding when, and how, to respond. If they are pressed for time, or the adverse reactions were fairly mild, they might just ignore them and decide not to react. If the reactions are more obvious, or more hurtful, they may decide to react but then have to decide how best to do so. Understandably some want to, and a few even did, swear at on-lookers. Some complain or challenge the reactions. But most grandparents we interviewed are determined to remain calm and offer an educational reaction. They want to reduce ableism. They want to encourage questions and conversation. They want people to learn, and accept. They want to stop apologizing. They want to demonstrate for their grandchildren how to handle ableist reactions. They hope to contribute to a broader societal awareness and acceptance of people with disabilities. I Try and Educate More Than Get Angry About It Doris typically embraces an educational approach, but is quick to tell people off when she feels they have acted inappropriately. Doris, age 55, cares for John, age 11, who has numerous disabilities including atrophy of the brain, Lennox-Gastaut seizures, and visual and hearing impairments. Doris assists with his feeding tube, ventilator, tracheotomy, and catheter. While she says there are many nice people, she has had to deal with people who have negative views, and make negative comments, about her grandson and his disabilities. It’s the adults that bother me. Because what this grandmother said to these kids. They walked over toward John, and were starting to ask questions, “What’s wrong with him,” or something like that, which again, it may sound rude, but that’s how kids ask questions. That’s how they’ve learned, they’re curious. The grandmother came over and yanked those kids away from John and said, “Get away from him, he’s sick.” Like he had leprosy or something. I wanted to go off on her so badly. I finally composed myself. I looked at her and I looked at the kids, one was a boy and one was a girl, and I said to them, “Honey, you don’t have to be scared,” because they had these horrified looks on their faces. I said, “You don’t have to be scared, he’s not sick. He just doesn’t walk the same way you do, he gets to ride around all the time in this cool chair.” And this grandmother looks at me and says, “He’s sick. He doesn’t need to be around these kids.” And, I said, “What’s sick is your attitude, and I really hope that your grandkids grow up to be more like my grandson than they do you.” And, I walked away from her. So that was one.

Another time, she and John were eating at a restaurant and an older woman approached the table and offered to take her grandson. Never met her. It’s obvious John is disabled. He’s in a wheelchair. She stands up and says, “If you ever get tired of taking care of him, here’s my name and number, I’ll be happy to take him.” It’s like, are you kidding me, did you really just do that? Like he’s a pet dog. I honestly couldn’t say anything to her because, I was just dumbfounded. Like, do people really do this? It is unbelievable the things people will do and say. I have, I never would have ever imagined John that there are some very nasty, nasty people.

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While she has always been a champion of minorities, she says she has recently become a much more fierce advocate, particularly concerning disability rights. She attends rallies and marches, and goes out of her way to educate people. I really try and make everyone know that the word retarded is not to be used around me, and everyone knows that if it is they would be told that the word is not to be—it’s a no-no. Especially in a derogatory way. I let them know that it is offensive to a lot of people, and that I am one of those people that it, you know, that it offends. That, I use education more than anger. I try to use education like, “Have you ever, when you used that word, thought of the people that you’re offending. Have you ever thought of the people that try so hard every single day to have half of a normal what they consider, what you consider to be a normal life, and you are just throwing this word around, and it’s very offensive.” So I try and educate more than get angry about it, but that’s taken some practice, if I’m honest with you. I used to get pretty angry about it.

She Will Go Up to Them and Say, “This Is Mike and He Has Epilepsy” Several grandparents mentioned that when people stare they have a variety of techniques for responding and teaching people about the grandchildren’s disabilities. Paula appreciates that her daughter responds proactively. Paula, age 66, cares for Mike, age seven, who has autism and was diagnosed with an epileptic condition due to a rare genetic mutation. Mike can’t speak. Cognitively, he is like a toddler. . .We take him out all the time. He is not difficult to take out. He is very cooperative. He loves going to the stores. He is not disruptive at all. We just have to make sure that he is safe and that he doesn’t just take off. He makes some noises. He squeals at times. If he gets over stimulated he might lash out and people would look. My daughter handles these very well. At first it would bother her but now if she sees someone staring at him and she will go up to them and say, “This is Mike and he has epilepsy.”

Paula and her daughter are hoping that they can educate onlookers who might be turned off by some of the behavioral manifestations of Mike’s disabilities, since he can lash out unprovoked. Paula and her daughter make it their mission to be proactive and to tell people about Mike and his disabilities. I Am Not Ashamed, It Is That I Want Her to Be As Normal As She Can Be Some grandparents are unsure how much to say. On the one hand, Marina is happy to explain about her granddaughter’s diagnosis, on the other hand she feels people rarely need or want any explanation. Marina, age 60, cares for Carly, age two, who has Williams syndrome. Carly does not walk or talk and Marina works hard to encourage development of both skills. When she and Carly are out together, she has mixed feelings about explaining Williams, a lesser known disability, to others. I don’t feel the need to explain her Williams, but sometimes I want to. She is such a delight, it is not like visually anything is wrong with her, she has such a bubbly personality laughing and screaming with delight. It is not necessary that the whole world knows. I am not ashamed, it is that I want her to be as normal as she can be. I told the gymnastics lady she has Williams, because she does have some limitations but I want her to do whatever she can do.

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It’s a Medical Issue So There Is no Need to Apologize for Something That Is Beyond Their Control Some grandparents feel the time has come to stop apologizing for children with disabilities. If they have outbursts, if they make noise, if they have a seizure, if they have tubes or other medicalized equipment, so what? They have a medical condition and it is not something deserving of apology. Several of the grandparents we interviewed try to use these instances as teaching moments. Karen points out that the diagnoses are out of our control, but our reactions to it are not. Karen, age 40, cares for Pam, age two, has intellectual disability, epilepsy, and sensory processing disorder. She takes Pam with her everywhere, as long as it is not too crowded and there are no flashing lights. Sometimes Pam will scream, or have a seizure, and Karen focuses on caring for her. You know, there’s a lot of parents who if they have autistic children they will apologize if their kids are having a moment. I’m not that parent. It’s a medical issue so there is no need to apologize for something that is beyond their control. Now, there is sometimes when a kid acts up and I will apologize. But, if it’s something that their disability, I’m not the parent that will apologize for my child being disabled. I’ve never felt a need to apologize. . .One time I did have Pam with me. We were actually on vacation. And she was having one of her fits. . .because we were in a place that started to get crowded while we was in there. You know, people will stare at you for anything! And, I’m like, I just looked at those by us and said, “She has disabilities she can’t control.” That’s usually what I, if I have to say anything, which is it’s a disability not a behavioral problem. Back up, let me do what I got to do.

Karen says that Pam has not seen her paternal grandparents since she was first diagnosed because they rejected the diagnoses. When Pam’s development slowed they blamed her parents and then severed the relationship. She’s never even seen her other grandparents since she left because the way they treated Pam. They were like, “Ain’t nothing wrong with her. Ain’t nothing wrong with her.” Which is fine and understandable, but when you have someone with a PhD that gives her testing and give a diagnosis, you don’t sit and argue with the parents. You do research and you learn as much about this child’s disability so that you can interact with them. Her other grandparents have chosen to have nothing to do with her versus learning everything they can about her disability.

Karen has decades of experience caring for her own children with disabilities and dealing with people in public places. Once her youngest daughter had a seizure at a store and Karen had to cope both with her daughter and the on-lookers. When she come out of the seizure, there’s 30 people standing around looking at her. You know, she’s disoriented, confused, and all these people, and she starts throwing one of her fits because she’s out of her comfort zone. And, I had one woman tell me that disabled children don’t need to be in that store. I looked at her and said she has disabilities, and she needs to back up off my kid because, I mean, she was right there. . .my child didn’t deserve to be in the store? I turned around and told her, “My child has just as much as a right to be anywhere that you do.” I said, “Just because she’s disabled, she still has rights. She’s still a human being.” And, that’s the only time I’ve ever had an issue.

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Managing Views on Disabilities Managing other people’s reactions to disabilities can be a time and energy consuming task. Often people’s reactions are positive, kind, and caring, making it easy to take grandchildren with disabilities out to public places. Other times people have negative views and are less respectful. They stare, look away, or hurl offensive comments, making it much more challenging to take grandchildren with disabilities out to public places. The offenders are usually unknown people who happen to be at the same location. But they might also be health care professionals or other family members, including parents and grandparents. When situations arise, grandparents have to do the emotional work of weighing the offense, weighing the consequences of scolding the offender, and weighing the consequences of ignoring the offense. Most often the grandparents we interviewed tried to educate. They are wary, and weary, of ableist responses. They made it clear that they welcome questions and prefer interaction to being invisible.

Notes 1. Center for Disability Rights (2018), Marshall (2015), Yu et al. (2015), Horne (2012), Ludlow et al. (2012), Maag and Katsiyannis (2012), Neely-Barnes et al. (2011), Park and Chitiyo (2011) and Ryan (2008, 2010). 2. Yu et al. (2015), Horne (2012), Ludlow et al. (2012), McIntyre and Hennessy (2012), NeelyBarnes et al. (2011), Park and Chitiyo (2011), Anderson (2010), Resch et al. (2010), Ryan (2008, 2010), Farrugia (2009), Peters and Jackson (2009) and Green (2003). 3. Yu et al. (2015), Horne (2012), Ludlow et al. (2012), McIntyre and Hennessy (2012), NeelyBarnes et al. (2011), Park and Chitiyo (2011), Anderson (2010), Resch et al. (2010), Ryan (2008, 2010), Farrugia (2009), Peters and Jackson (2009) and Green (2003). 4. Anderson (2010).

Part II

Impact on Grandparents

Chapter 12

Rethinking Work and Retirement

Many grandparents juggle care work and employment. In Grandmothers at Work, Harrington Meyer (2014) interviewed 48 grandmothers who are working and caring for grandchildren. Though some did not alter their work schedules to provide care, many did. Several reported that they change hours, reduce hours, change jobs, or use paid vacation and sick days to care for grandchildren. Our findings for Grandparenting Children with Disabilities are much the same. We found grandparents repeatedly rethinking their work and retirement plans so that they could provide care for their grandchildren with disabilities. Just over one-fourth of our respondents either stop working or reduce work hours to care for their grandchildren with disabilities. Among those who are still working, many change their schedules frequently, going in late, leaving early, and using paid vacation and sick days to care for their grandchildren with disabilities. There are a few exceptions. Some are clinging to their jobs as a strategy to reduce grandchild care. Some are clinging to their jobs because they need the income to help pay for necessities for the younger generations or to recover losses they experienced due to the Great Recession. Others have already retired, thus when they find that they have grandchildren with disabilities they seamlessly begin care work. Several retire early and move to new homes to provide care. Now they are all providing care for grandchildren with disabilities, and neither their employment nor retirements are unfolding as they had planned. Whether they are reducing hours, changing jobs or homes, retiring early, or delaying retirement, they are reconfiguring their plans. Again and again.

Impact of Care Work on Grandparent Employment and Retirement Adjusting paid work to provide unpaid care work can have enormous impacts on short term and long term work and retirement plans. Many, though not all, studies suggest that working and caring for grandchildren may adversely impact © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_12

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employment and retirement. In the short run, care work may lead to reduced hourly wages, reduced annual wages, greater reliance on public assistance, and depleted savings. In the long run, care work may lead to smaller Social Security benefits, fewer and smaller private pensions, less savings for old age, and greater reliance on public assistance in old age.1 Indeed, being employed does not appear to decrease the likelihood that grandparents will provide care. More than three-fourths of those in their early 50s and two-thirds of those in their late 50s are employed and fully one-third change their work schedules to care for grandchildren.2 While some studies show few economic impacts of care work, others show that workers caring for family members, particularly those caring for multiple generations, may reduce hours, refuse or limit travel, switch to more flexible jobs, decline promotions, or even leave the labor force.3 As cumulative inequality theory suggests, the impact of caring for grandchildren may have a more pronounced impact on the work and retirement plans of grandparents with fewer resources.4

Changing Work Schedules to Provide Care Many of the grandparents we interviewed alter their schedules and use their paid time off to care for their grandchildren. They come in late, leave early, bring grandchildren to work, call in sick, use vacation days, bring work home, or work over the weekends all in an effort to free up time to care for their grandchildren with disabilities. While this may seem like a good strategy in the short run, in the long run it means they never get a day, or more than a few hours, off. Many do not have time to be sick, or rest, or see friends, or travel. Some do not have time to attend to their own lawns, laundry, paperwork, or doctor visits. Many of the grandparents strive to be maximally available, flexible, and responsive, whatever the impact on their employment. Often their jobs are flexible and their employers are empathetic, but not always. It Is Pretty Rare That I Reschedule Some grandparents actively attempt to minimize how often they rearrange their work schedules. Bree, age 76 cares for Ava, age 13, who has Down syndrome. She works part-time as a Reiki healing specialist. Because it has such a positive impact on both her and her clients, she hopes to continue this work until at least age 80. But she is called upon to help with her daughter’s three youngest children quite often, typically for snow days and sick days, so occasionally she has to reschedule a client. I work part-time, and now that Ava is in school, sometimes I reschedule a person. If my daughter needs my help, for snow day, or if my daughter needs to work, or if one of the kids gets sick, I will ask a client to reschedule. Some of the people I work with are in cancer treatments and I would not ask them to reschedule, others I might ask, if they have a knee injury for example. But it is pretty rare that I reschedule.

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I Do Change My Schedule to Go See Him Many grandparents regularly reconfigure their work schedules so they can spend time caring for their grandchildren with disabilities. This is easier to do when colleagues are empathetic. Jane, age 50, cares for Jay, who is 17 months old and has Down syndrome. She works full-time and, because she lives eight hours away, sees Jay about one weekend a month. She has an MA in nursing and teaches classes. She designs her schedule to maximize time with Jay. She says her colleagues are supportive, and very fond of Jay. I do change my schedule to go see him for a long weekend. And my daughter is due again soon and I already have a plan to go help for a week and help her and help with Jay. They will be less than two years apart. I set the schedule in advance so that my students are busy with meetings and observations, so that I could have long weekends. I will get proctors for exams with my students so it does not interfere with the other instructors. They all love him, have gotten to know him, because they were up here for the first six months and my daughter brought him into school all the time and they all got to know him and they love him. They are constantly helping us, giving us pointers and tips. They are all very supportive.

If I Have to Leave Early to Get the Kids from School, That Is What I Do Similarly, Heidi often rearranges her work schedule to care for her grandchildren. Heidi, age 59, cares for her four year-old grandson Max, who has Down syndrome, as well as her six other grandchildren. She works more than 50 hours a week and routinely rearranges her work schedule, and uses her paid vacation and sick days, to provide care. I have left early or taken a day of vacation if something is coming up, like when Max went for testing. My boss is great, he lets me work around whatever needs to be done. If I have to leave early to get the kids from school, that is what I do. I use my paid vacation and paid sick days to take care of the grandkids. I probably use five a year, less now that the kids are older. But often I don’t have to use a vacation day. I can just leave early and make up the time.

Heidi wishes she did not have to work at all and plans to retire the day after she turns 62. She hopes to spend a lot more time caring for the grandchildren and volunteering at the NICU. I Miss Work All the Time Many grandparents rearrange their workdays almost constantly. Candi, age 61, cares for Aly, age 12, who has ADHD and asthma. When Aly was young she came to work with Candi, but as she has grown older, Candi often has to miss work to care for Aly when she was not at school. Yes, I have to change my schedule all the time for her. I work at a day care. I miss work all the time. I am the mom. I’m old fashioned. I believe that moms should be home with kids when they are sick. I would be home. I would miss work. My husband and I would alternate days home with her when she was sick. It was a problem at my job, but what do you say, my granddaughter comes first. I need this job but I hope they understand. So my husband and I would miss work to care for her in a second.

When Aly was nine, Candi’s second husband died and she says now that she is the only one left to care for Aly, she misses even more work.

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I Change My Schedule Constantly to Care for Carly Similarly, Marina makes constant schedule changes at work so she can care for Carly, age two, who has Williams syndrome. Marina works as a bookkeeper, about 15–20 hours per week, because she needs to be flexible to care for Carly. I totally change my work schedule for Carly. I totally do. When Carly is here, for those three days, it is all about Carly. No work is going on. I change my schedule constantly to care for Carly. I’m self-employed, so no boss. My work is only Thursday and Friday, I have to fit it all in on those two days. I do sometimes take her on weekends, and overnight, whatever they need. I try to accommodate. Sometimes I have them because I know the parents are so drained and need the time, I have her and her sister overnight.

Marina’s goal has been to be available to provide care whenever needed but as time went by, she found she needed to rebalance her paid and unpaid work. She asked for Fridays off from Carly so that she had one day a week to attend to her job without interruptions. When Carly is here I do no work. If I see a business call coming through I just wait and take it later. I always say yes. I always take her when her parents ask. The first time I said I needed more time was when I said I needed Fridays off. . .so I could get my work done. I have had Fridays off from Carly for three months now. It is helpful to me to get stuff done and have time to think. But then I go longer without seeing her. But then she is totally delighted to see me. She just pops out of her mom’s arm. She just lunges for me.

I’m Now Working Pretty Much Whatever Schedule I Can Work When jobs are extremely flexible, some grandparents take full advantage. In addition to coming in late or leaving early, Jill at times works weekends or from home. She is constantly changing her work schedule to provide care. Jill, age 48, cares for Minnie, age three months, who has Down syndrome, a heart defect, and an intestinal disorder. Jill works full-time from home and also cares for Minnie around-theclock several days a week when Minnie’s mother is at work. Typically, there are three months a year when Jill works well over 60 hours a week but she cannot do that and care for Minnie three days and nights a week. She has had to continually rearrange her schedule to accommodate numerous doctor and therapy appointments. My job has been really, really supportive and I’m now working pretty much whatever schedule I can work. Somedays, I go in at four in the evening and work until midnight. Some nights I work the overnight. They’ve been letting me work on weekends to make up for days I have to take her to therapy or doctor’s appointments or whatever. So, yeah my whole schedule has changed as far as work goes.

She says her co-workers have been wonderfully supportive, several of them have children with disabilities as well, and they have worked around her schedule. Recently, Minnie was hospitalized and Jill was so busy with her responsibilities that she did not sleep for over a week. She had to be admitted again about a month ago with the vomiting issues she was having before she was diagnosed, and unfortunately our hospital here has not been very supportive, and I ended up having to change my entire schedule because of course somebody had to be at the hospital with her 24 hours a day. So I was working over nights and then spending the entire day at the hospital with her and not sleeping for ten days pretty much.

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Both of her sons live with her and she said during these intense periods of caring for Minnie and working she has not been able to help them with food, laundry, or their educations. Her older son needs rides to his classes at the community college and her younger son is home schooled. Because she is paid a salary, she said her paycheck has been constant, but their expenditures have increased because she is giving her daughter about $300 a month, her family has had to eat out more often, and her sons have to take Uber everywhere given that she is often not able to provide rides. By far her biggest financial concern is that her daughter and son-in-law have not been able to qualify Minnie for Medicaid. They make $30 a month over the limit. Already they have a $580,000 medical bill and they expect that to continue growing as she continues to need more surgery. I Cut Back on My Work Because of Mike Many grandparents change jobs, change residences, or change states to be able to provide more help to grandchildren with disabilities. Paula did all three. She gave up full-time work in exchange for part-time work, sold her house, moved in with her daughter, and moved to a resource-rich state all in an effort to secure better care for her grandson. Paula, age 66, cares for Mike, who is seven and has autism and a rare epileptic condition. I cut back on my work because of Mike. My work is flexible because I work with other people who can fill up my place. Before Mike I was working two jobs. I’m only doing real estate part-time now. I probably put in about 20 hours a week, maybe less. The fact that I’m single so we were able to combine our resources for Mike. My son-in-law works full-time. So it takes the three of us plus the nurses to care for him.

Mike’s medical needs require skilled care that relatively few are able to provide. Moreover, he requires a wide variety of therapies and medical visits. Paula juggles her part-time paid work with her unpaid work caring for Mike. He has a feeding tube that we feed him and give him medication through it. He can eat but at times he doesn’t want to. So I would feed him and give him medication through the tube. So I learned how to do all the time. I would say that I provide about 35 hours a week of hands-on care. . .Often, I go to doctor’s appointments and to therapy with him. Teachers come to the house twice a week and all the other therapists, OT, PT, and speech therapy. He goes to horseback riding therapy. I help with everything in the house, cleaning, cooking, and laundry.

Paula’s annual income is about $50,000 and she says with less money coming in she must be much more careful about how she spends. Without My Daughter’s Help, I Wouldn’t Be Able to Do This on a Reduced Income Even grandparents who are self-employed find that caring for grandchildren often interferes with work. Jean, age 70, is a painter who works from home. She travels one and one-half hours every week and stays for a couple of days at her daughter’s to help with David, who is six and has Down syndrome, and his siblings. The travel interferes with her artwork. Some of her paintings take weeks to complete and at times she gains momentum but then has to stop to travel to her daughter’s.

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It sort of interrupts the flow of it all. But, that’s alright. I never made enough financially with the artwork.

With an annual personal income of about $30,000 and household income of $50,000, Jean and her husband get some financial assistance from their daughter, David’s mom. We are both in Social Security. We don’t really have much going on. Usually my daughter will pay for my travel. Without my daughter’s help, I wouldn’t be able to do this on a reduced income.

You Are Not Supposed to Miss Any Work for Any Reason While many employers, and co-workers, are understanding about frequent schedule changes, not all are so flexible. Lizzy is quite worried about strictness at her new job. At age 55, Lizzy cares for her custodial grandson Mark, who is 12 and has ADHD. She covers all of her and Mark’s living expenses, a task that is becoming more challenging as well-paid work is in shorter supply. Lizzy worked for years at a large bank but was laid off last month when they closed her entire department. Before the payoff, she routinely changed her work schedule to accommodate Mark’s schedule, and they permitted flexible scheduling and working from home. She used all of her sick days and vacation days to stay home with Mark when he needed her. Recently, Lizzy found a new job and this provided a great relief as she was not at all sure how she would cover her mortgage payment. But the new job is not likely to be very flexible. In my new job, which starts next month, there is a high turnover rate and no one likes to work there. One woman I know there was written up for staying home with a sick kid, so they will not be flexible. You are not supposed to miss any work for any reason for the first 90 days, but I have pulmonary vascular disease and I have to go to the doctor and I have to get my refills. I will not have very good health benefits there. But I have no health care right now. When they laid us all off, I was going to apply for Medicaid but then I got this job. By the time I get the paperwork done I will be at the new job. This new job is permanent but there is high turnover, and they just lay people off if the industry changes.

Between her own health problems and the care she provides for Mark, she cannot imagine how she will manage to retain this new job. She has been on unemployment insurance before and it required a long drive for a small benefit; she is concerned that she many end up on unemployment again through this new job. If there is no work you are just sent home. No notice. This mortgage industry is not good right now, the jobs are hard to get and they are not understanding about family issues. They just lay people off, no notice. Unemployment is terrible down here. The maximum unemployment benefit was $275 a week and I had to drive an hour to just be at the meetings with them and the amount was so small. I kept asking, seriously is this your closest office? I have to drive so far just to keep the unemployment benefit.

It Is Even Hard to Keep Even My Current Job, Which Is Very Flexible Some grandparents have replaced lucrative and prestigious careers with part-time work so that they are more readily available to care for their grandchildren with disabilities. Kim, age 59, and her husband are guardians of two grandchildren, Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. The impact of

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having sole custody of two grandchildren on Kim’s career has been enormous. She exchanged a highly paid full-time job with a major tech firm for a part-time job she can do from home. I had a huge career, but when we got Matt I reduced my hours. I gave up my career. The kids had so many needs, so much court stuff, so many doctor appointments, that I let that go and now just work from home part-time. When we took on Matt I just had so many interruptions in my work and they just couldn’t take the little commitment I could give them. For a year I did not work at all and I just focused on Matt, getting him settled, but then I focused on finances, I just had to work. So now I work from home, but only a few hours a week.

The grandchildren have numerous emotional, physical, and legal issues that she must help them navigate. Even a part-time at home job becomes more than she can juggle at times. It is even hard to keep even my current job, which is very flexible, because there are constant interruptions for doctors, courts, something at school. I would get the call. Last year, Matt had a serious digestive issue and I was always having to get him from school and bring him home or to the doctor.

Her difficulties juggling employment and care for the grandchildren became magnified when her husband was forced to work in another state to keep his job. My husband is working full-time and, for the past four years, to keep his job despite the layoffs, they moved him around and so I stayed here with the grandkids but he goes to another state every week Sunday through Thursday night. We have been doing that for four years. He drives 950 miles round trip each week. That cost is all on us. We did not move because Izzy had started high school and was high risk. We had to give her the stability of not moving. But it’s been very difficult on finances and our relationship and our time.

They had planned to be retiring about now. Their annual household income is $100,000. They have spent their entire nest egg caring for the grandchildren. Her husband is eight years older and work is difficult to find and retain. Yet, given the grandchildren’s need for stability, moving nearer to his work seems out of the question. He just turned 67 and he will be working forever. Izzy will graduate and we want her to continue on to college. But we have ten more years with Matt. There is no retirement for us, for him. We will not retire. He could take Social Security, we talked about him taking the benefit and getting a smaller job near home, but we can’t afford to raise these kids on Social Security when it will be less than half of his wages. And so he has commuted for four years and will keep doing that. He has tried so hard to look for other work, work near bye, but the jobs keep ending, closing, laying off. Many times we have moved to find more work. . .but this time we can’t move. Izzy needs stability, we need to stay put.

And Now, If I Got a Job Now, It Would Have to Be Quite Flexible So I Can Help with Paul Grandparents who are unemployed find it particularly challenging to find new jobs if they must insist on malleable scheduling. Rae, age 61, cares for all of her grandchildren, including for three year-old Paul, who has Down syndrome and immune deficiency. Over her life course, she has repeatedly rearranged her work schedule, and left work entirely, to provide care to family members, including her mother-in-law, her mother, and her oldest grandson. Now, unemployed, she is

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looking for part-time work but says it must be flexible so she can continue to care for Paul. This is not what we planned. I was a stay at home mom, and I had jobs but I never had a career, and some jobs I had to leave for family reasons. . .I guess I felt that I would keep helping but also have a job so I could help financially. But when our oldest grandson was born premature and they could not find day care for him, we talked about it, and I was at a job that did not pay much and so we decided I should leave my job. I cared for him all week till he went to kindergarten and my daughter paid me a stipend for that care. I was ok with this because I wasn’t leaving a career. And now, if I got a job now, it would have to be quite flexible so I can help with Paul.

Keeping Paid Work to Minimize Care Work Setting limits can be difficult. Some grandparents are not eager to substitute grandchild care for paid work. Sometimes their adult children ask them to quit and offer to pay them to provide care. Other times, they hint that they wish grandparents would provide more care. But providing care for grandchildren with disabilities is work, often hard work, and some grandparents do not want, or are not able, to do it. Some feel they raised their children already and now they want to be grandparents and not parents. Others simply want to be free to live the life they planned, including work, socializing, and traveling. But when needs are high, care work can be a slippery slope. It can be difficult to say no unless you have a good excuse. As a result, some keep jobs they do not need so that they have a good reason to say no. They continue to do paid work to minimize care work. I Can Retire. I Choose Not To In stark contrast to the many grandparents who reduce or end paid work so that they can provide more care for grandchildren, Jennifer is one of a few grandparents who said they keep working so that they have a legitimate excuse for saying no when asked to provide more care. Jennifer, age 60, cares for Tina, age two, who has cerebral palsy. Tina’s parents wish Jennifer would provide a lot more care. When she went back to work they kept on hinting that I would do more babysitting. And I thought about it and I didn’t want to raise them. If I babysit when someone is in school all day, I’m raising them. I really didn’t want to. I want to be grandma, “Yes you can have this, yes you can go here.”

Jennifer is clear that she wants to be a grandmother and not a mother. She wants to control how often she sees her grandchildren and how much care she provides. She works more than she needs or even wants to so that she can minimize how much care she is providing. She wants to play with, rather than care for, Tina. I can retire. I choose not to. Even after she had the baby this past summer, I did summer school. They asked me if I would consider helping out. They would pay me and my husband said, “We will not take money.” And I said I wouldn’t. I don’t want to get stressed or angry. That’s not my job. . . I usually have them once a week. It’s fun because we make it fun.

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I Do Not Want to Babysit Every Day Colleen is also staying on the job, delaying her retirement, to curtail grandchild care. At 62, she cares for all of her grandchildren, including seven year-old Sam and two year-old Kit, who have Down syndrome. She works full-time as a government clerk and uses most of her two weeks of paid vacation each year to care for the grandchildren. She plans to keep working until the youngest of the grandchildren is in full day school. My plan is to retire after all the grandchildren are in school because I do not want to babysit every day on a daily basis. My youngest grandchild is one, so I plan on working about five more years. . . I cannot be the main everyday babysitter. It is too exhausting. I don’t want to do it. I could do it. I don’t want to do it. I will retire when they are all in school. I do not have as much patience as I used to have. If I take care of all three kids all day I’m exhausted. That’s why I can never be the primary child care provider for the grandkids. I’m done.

In the meantime, she works full-time and watches the grandchildren almost daily after work and often on Saturday mornings. She uses most of her paid vacation to care for the children, and she changes her schedule frequently to care for her grandchildren Yes, I do change my work schedule, often. If any of my kids need babysitting I will arrange time off. All my kids and their spouses work. If they need child care, I will arrange, take time off, try to accommodate them. So I will take a day off to care for them. I get personal time, sick time, and I can use that if a family member is sick. My husband and I do go away, not every year. But I use a lot of my vacation time for child care.

After they retire, they plan to continue caring for their grandchildren, but never as a full-time job. It is simply too tiring and not how they want to spend their retirement. Colleen and her husband are following in the footsteps of both of their own parents by living nearby—but breaking with tradition by setting limits. I never really thought about it, but I have four kids, they live near me, this is what I do. This is what my parents did, and what my husband’s parents did. No plans to move to Florida any time. We are here with our family.

Leaving Work to Provide Care When they learned that their grandchildren have disabilities, many of the grandparents we interviewed left work to provide care. Some had already retired or were ready to retire anyway, so the timing for a transition was just right. But many had to rethink their plans, often retiring early despite the financial and social consequences. Many were eager to support their adult children as they faced uncertainty and greater needs. Some felt there were no good alternatives as they realized that other childcare providers would not, or could not, provide the care their grandchildren need. We Pretty Much Do What We Want Some grandparents had planned all along to stop work and provide care for their grandchildren. Mia was one of them. For her, the transition out of work and into caring for her granddaughter has been seamless. She and her husband have plenty of income

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and investments, and they had always planned to help care for the grandchildren anyway. Mia, age 66, cares for Cally, age 13, who has Down syndrome. Her husband retired earlier. He was a corporate banker and retired four years before I did, and was working 80 hours a week and retired and drove a handicap bus for four years waiting for me to retire. He had to wait four years for me to be 58 so I would get my health insurance and pension.

Mia joined him in retirement eight years ago, at age 58. Now, she says, they have an annual household income of nearly $80,000 and no concerns about their financial security in the future. Their fiscal confidence is in part due to their decision to move south, where living expenses are lower and their fixed retirement income stretches farther. I retired eight years ago, when I was 58. I was a state employee and my pension kicked in, and health insurance. You can’t beat being a state employee. If you earn your money up north and then move south, it goes a long way. We live very comfortably. . .Now I’m on Medicare, I get a private pension from the state, and I’m also getting Social Security. Same for my husband, private pension, Medicare, and Social Security. . . . We pretty much do what we want.

I Retired Because I Was Going to Move Here Some retire early so they can care for their grandchildren, and often they face difficult social and financial consequences. Chris, age 67, cares for Wendy who is ten and has anxiety disorder and has autism like symptoms, and Mark who is seven and has ADHD and Oppositional Defiant Disorder. Once her own children were in school, she worked full-time at a company that served adults with intellectual and developmental disabilities. She trained the staff on how to work with people with certain conditions and loved the job very much. But her daughter asked her to retire early and move cross country and help with the children. Her daughter and son-inlaw bought a house for Chris and her husband, just two minutes from their own, and now Chris watches the grandchildren almost daily. I retired at age 66, just the month before we moved here. I retired because I was going to move here. We could not afford for me to retire there, but we came here. My husband has not worked for 10 or 11 years because of disability. He has heart failure. And he has a TBI, traumatic brain injury, from a few years ago. He had Social Security disability, which was about one-third of what his salary had been. We both have Social Security now.

Chris had never intended to retire so early and, with a combined household income of less than $40,000, they are finding it difficult to make ends meet on just their Social Security checks. I’m a little worried about money. . . I worry that we will run out of money, we have a little pad, but it gradually disappears. But we have excellent health insurance which is very helpful in our situation, Medicare and Supplemental. I don’t worry about it that much. We are fine, but if push came to shove my daughter and son-in-law will be right there. She would never let us suffer. I appreciate when she asks, if we are ok for money. For me to ask would be very hard. We can cut back but she says we should not have to.

That said, at the time of the interview, Chris needs to see a dentist about an abscessed tooth and cannot afford to go. Her daughter is aware of the toothache, but has not offered, and Chris has not asked for, financial assistance.

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We don’t have money for me to go to the dentist, so that is not going to happen.

In part, money is tight because they spend so much on the grandchildren when they are caring for them, including snacks and crafts. Additionally, several times a week, she prepares meals for all of them: she and her husband, both grandchildren, and her daughter and son-in-law. It’s more expensive than I thought caring for the kids, food, making meals for six people a couple times a week, and having snacks around. They eat snacks all the time they are here. And the crafts. It costs more than we thought.

I Quit My Job Because She Desperately Needed Someone to Watch Him Similarly, Connie retired early to provide care and misses both the social connections and the financial security that came with paid employment. Connie, age 57, cares for Andy, who is two and one-half and has cerebral palsy. Andy and his mother live with Connie and she cares for him about ten hours a day Monday through Friday and then also sits for him occasionally on evenings and weekends. She worked for the same dentist for 35 years and loved her job and income. Even though they allowed her to keep a very flexible schedule, she left work to care for Andy, retiring just after he was born because her daughter needed help. I quit my job because she desperately needed someone to watch him because daycare wouldn’t take him. And, it’s like, what she’s going to do? And, I was kind of ready for it anyway, so I went, sure, I’ll do it. And, it’s not like it’s a burden, I would do it even if he wasn’t special or had disabilities, I’d do it. Because that’s what a grandparent really should do.

She misses the income, saying that they have a lot less income than they need and that she is very concerned about her own financial security. But she has no regrets. Incredibly, right after she retired, so did the dentist. He told her he just couldn’t do it without her. This Is Not What We Expected Even the best laid out plans for work and retirement are often discarded when grandparents scramble to respond to yet another need. Some grandparents are nearly overwhelmed by the mix of having grandchildren with disabilities, their own illnesses, and insufficient resources. Anna, age 66, cares for seven year-old Jason, who has Down syndrome and is being tested for autism. She says that their retirement is not going to plan. Though their household income is less than $60,000 per year, she is not particularly worried about their finances. But health, disabilities, and logistical concerns have proven burdensome. This is not what we expected. We never imagined my husband’s illnesses. And we were not expecting my cancer either. And we never expected a grandchild with a disability so this is not what we expected. You pray for all of the children to be healthy. Also, we are so spread out. Everyone is somewhere else. We did not expect that either. It would be nice to have someone in town. We are more spread out than we imagined. We try not to worry about money. Through my faith I feel we will always have what we need.

Who’da Thought We’d Being Doing This When We Retired? Similarly, Joyce and her husband have replaced all their plans for their own old age with plans for caring for their grandchild and themselves. Joyce, age 61, cares for her

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coresidential grandchild, Mindy, age 13. Mindy has DiGeorge syndrome and needs constant supervision and assistance with most activities. Either Joyce or her husband, but never both of them, can go out to exercise and see friends occasionally. They never go as a couple. All of their retirement plans for travel and spending time with friends are being reconfigured as they refocus their time and energies on caring for Mindy. They are completely surprised to be in this situation. Nothing in their lives is going according to plan. We often say, “Who’da thought we’d being doing this when we retired?” But, not in a bad way. You just never know what life’s going to give ya.

Rethinking Work and Retirement While many grandparents expect to care for their grandchildren, few expect to care for grandchildren with disabilities. One never knows. Of course many grandparents do not provide any help or care for their grandchildren with disabilities. But those grandparents are not represented in this book. Every grandparent in this book provides at least some care for their grandchildren. Some are still employed and juggle work and care work, often by using their paid time off, and rearranging their works schedules, to provide care. Others reduce work hours or change jobs to maximize flexibility and care availability. A few, who are eager to set limits on just how much care they provide, keep one foot in the labor market because it provides a good reason to say no when pressed to provide even more care. Some continue working because they are not ready to retire, need the income to cover expenses for their grandchildren, or are attempting to rebuild their nest eggs. Others are already retired, or retired on the spot, to be available to care for their grandchildren. Whatever their path, few now see their plans for middle age and older ages unfolding as expected. Most are now scrambling to rebalance care work, employment, retirement, finances, and social lives in the face of increasing needs and dwindling resources. As cumulative inequality theory suggests, those with the most resources are better able to rethink their plans without adverse consequences while those with fewer resources are more likely to feel a substantial drain on their social, emotional, and physical wellbeing.

Notes 1. Zhu et al. (2019), Rupert and Zanella (2018), Hayslip et al. (2017), Huo et al. (2018), Henderson and Bailey (2015), Ho (2015), Lee and Tang (2015), Lumsdaine and Vermeer (2015), Purcal et al. (2014), Hayslip and Smith (2013), Folbre (2012), Baker and Mutchler (2010), NAC and AARP (2009), Harrington Meyer and Herd (2007), Ludwig et al. (2007), Park (2006), Pierret (2006), Wakabayashi and Donato (2006), Evandrou and Glaser (2003) and Evandrou et al. (2002).

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2. Zhu et al. (2019), Rupert and Zanella (2018), Henderson and Bailey (2015), Lumsdaine and Vermeer (2015), Purcal et al. (2014), Hayslip and Smith (2013), U.S. Bureau of Labor Statistics (2019), NACCRRA (2008) and Pavalko and Henderson (2006). 3. Zhu et al. (2019), Rupert and Zanella (2018), Henderson and Bailey (2015), Lumsdaine and Vermeer (2015), Purcal et al. (2014), Hayslip and Smith (2013), Folbre (2012), Glenn (2012), Harrington Meyer (2012), Aumann et al. (2010), Neal and Hammer (2009), Rubin and WhiteMeans (2009), NACCRRA (2008), Bittman et al. (2007), Heitmueller and Inglis (2007), Wang and Marcotte (2007), Brody (2006), Pavalko and Henderson (2006), Wakabayashi and Donato (2006), Carmichael and Charles (2003), Stoller and Martin (2002) and Cantor and Little (1985). 4. Luo et al. (2012).

Chapter 13

Redefining Social Lives

Caring for grandchildren with disabilities often reshapes social lives. The impact of care work on social lives is decidedly mixed. Some grandparents find that there is little impact, in part because they make a point of seeing old friends, traveling, and limiting care work. Some grandparents find the impact is substantial but they have few regrets as they redefine their social lives to exclude old friends and include instead family and, in particular, grandchildren. But many grandparents find that caring for grandchildren with disabilities has narrowed their world. They forfeit times with old friends, church, volunteer work, and travel adventures often because sparse resources and serious health issues combine to usurp their time and energies.

Impact of Care Work on Grandparent Social Lives Studies show that the social impact of caring for grandchildren with disabilities may be mixed indeed. Care work may have a positive impact when grandparents have sufficient resources, and sufficiently few care responsibilities, to be able to develop and protect enriching and diverse social lives. Care work may also have a positive impact when it increases feelings of being needed and useful, draws families closer together, and encourages more active and involved social lives.1 Conversely, care work may have a negative impact when grandparents have too few resources, and too many care responsibilities, to be able to develop or protect satisfying social lives. Grandparents often make sacrifices for their families, such as putting their plans on hold, delaying travel, or relocating to be closer to help support their adult children and grandchildren with disabilities.2 Studies show this may be particularly true for custodial grandparents who often have to significantly reduce the amount of time spent with friends and in leisure activities to care for grandchildren.3 One study, using data from aging urban African Americans from the Detroit metropolitan area, found that coresidential grandparents were about three times more like to experience reduced time in leisure activities than their non-residential counterparts.4 Studies © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_13

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have shown that participation in social organizations, particularly churches and volunteer opportunities, can positively impact emotional and physical health, yet many grandparents providing care forgo these activities.5 Caring for grandchildren may leave grandparents plenty of time and energy for a wide variety of social activities, making them feel rejuvenated and fulfilled. Some grandparents create their own support group.6 But providing too much of the more intensive types of care may leave them far too depleted for any social activities whatsoever. Cumulative inequality theory suggests that those with greater education, income, and expertise are more likely to be in the first group and those with fewer resources are more likely to be in the latter.

Little Impact on Social Life Some grandparents feel it is important to set limits on care work to protect their rich social lives. Often they are providing only a few hours per week or month of care for their grandchildren with disabilities. Many have spent decades building close friendships, travel groups, volunteer activities, church friends, and hobby groups that they have no intention of giving up. They are happy to be providing care to their grandchildren with disabilities some of the time, and happy to be living their own independent lives the remainder of the time. These grandparents have often just used their passports, eaten at the trendiest restaurants, and seen the latest movies. We See Friends a Lot Mia is one of several grandparents who is protective of her social life. She is eager to spend time with friends her own age and maintain her social schedule. Mia, age 66, cares for all of her grandchildren, including Cally, age 13, who has mild Down syndrome. She and her husband are both retired and watch the grandchildren often on weekends, snow days, holidays, and in the summer. They have plenty of time for regular exercise, travel, and friends. We travel quite a bit. Go to movies. I have a knitting group every Wednesday. We see friends a lot.

I’m Getting Ready to Go on a Bus Trip in April with My Friends Many grandmothers, including some who live with their adult children and grandchildren, continue to live active social lives. Rachel insists that she maintain a social life as an important part of her life. Rachel, a 61 year-old grandmother, lives with her single daughter who has sole custody of Rachel’s two grandchildren. The oldest grandchild, Sandra, is 16 and has autism. Rachel provides a lot of care for Sandra in addition to doing many of the household chores. However, this has not stopped Rachel from actively planning social activities. She sees her friends regularly and goes on road trips with them.

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As a matter of fact, I’m getting ready to go on a bus trip in April with my friends.

At times, Rachel wants to be alone and her daughter will take the grandchildren away for the weekend or send them to their father. Rachel takes advantage of their absence to get together with friends and do her favorite hobby: going to casinos. If I need any time to myself, she’ll go down to her dad’s house and visit with the kids so she’ll go away for the weekend sometimes. . .I like to go to casinos, going out with my friends on the weekend. My daughter does her thing and I do my thing and then we do family stuff.

I Started a Red Hat Group for Ladies Over 50 Some grandparents establish weekly or monthly social activities to ensure lively social lives. One grandmother even started her own section of the Red Hat Society.7 In an attempt to make sure she and other women her age had plenty of social adventures she created a group that meets monthly for socialization and travel. Anna, age 66, cares for her seven year-old grandson Jason, who has Down syndrome and is being tested for autism. She devotes two weekends a month to caring for her grandchildren and her mother, but otherwise she has plenty of free time for exercise, church, doctor appointments, and the Red Hat Society. Her husband does not like to socialize or travel, yet Ana maintains a busy social life. I started a Red Hat group for ladies over 50. I make sure I’m available for that. Usually I organize it. It is just for fun. Relaxing. My husband is not one for so much getting out and socializing but he does not mind that I do. We have our time for the two of us here.

Her Red Hat Society hosts local events as well as occasional travel adventures. Their travels take them around the country, often with women from other Red Hat Societies. Last year I did a group trip to New Orleans. I have another one planned for next year. I do travel some. My husband does not care much for traveling like we did when the children were younger. Then we would take vacations, but now he is settled. But I take a trip with my friends. I do a lot with the Red Hat Club. And with other Red Hat Clubs. We do day trips or week trips.

Anna says that most of her friends are grandmothers who also provide care for their grandchildren. Some even do so full-time. They constitute a tremendous support network for each other, and even though none of her friends have grandchildren with disabilities, she feels well buoyed. For Anna, time with empathetic friends is restorative. My friends are all very supportive. Most of my friends have grandkids and they spend a lot of time taking care of them. . .Their grandkids don’t have disabilities, but the grandchildren need the care. So we all support each other. We all put a lot of time in.

I Don’t Stop Our Life at Home for the Grandkids, Because I Think It’s Important Although they have made a few adjustments in their social schedule, Rae and her husband are very protective of their time with old friends, travel, and other social obligations. Rae, age 61, cares for all of her grandchildren, including three year-old Paul, who has Down syndrome and immune deficiency. Though they care for Paul

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between one and three times per week, and sometimes on weekends, they have plenty of time for social life and travel. My husband and I have a very social life. We see lots of friends on nights and weekends, we get away for holidays. I don’t stop our life at home for the grandkids, because I think it’s important. We will work around Paul’s surgeries, but I went to lunch Monday with girlfriends, and last Saturday we went out. We babysit at night for the kids when they call, but we are very busy socially. . . . We like to travel. We are not as active in our church, we used to be. We are going on a cruise with some friends. When we can financially do it, we travel.

We Spend a Lot of Time with Friends, Vacation Together Each Year Jane has also made some adjustments, mainly by foregoing volunteering and church. But she makes certain they spend a lot of time with friends their own age, often traveling together. Jane, age 50, cares for Jay, who is 17 months old and has Down syndrome. She works full-time and, because she lives eight hours away, sees Jay about one weekend a month. Her husband likes to go with her for weekends with Jay when they can get their other daughter to watch the horses, but he makes it clear that he is there to play, not change diapers. We like to go together when we can, our middle daughter will take care of the horses so we can be gone, but sometimes she can’t watch the horses and so I go and he stays back. But we are in contact. He is used to Jay being here, he does not help with diapers and changing clothes, but he does help with feeding. He did our kids’ diapers, but not as grandpa. He says, “I’m the grandpa, I don’t do diapers.” He prefers to snuggle, play, and to be the fun one.

Between full-time work and long weekends with Jay, they do not have a lot of time for volunteering or church anymore. But they still see their friends and travel regularly. I don’t have time much for volunteering—like I used to. I wanted to volunteer for the NICU, where you cuddle the babies, but the place was too far away, 50 minute drive. But church I just don’t do much anymore, haven’t made time for that. We spend a lot of time with friends, vacation together each year. We went to Alaska for our anniversary. We go to Key West with friends every winter. We get together with friends two weekends a month.

I See Friends a Couple Times a Month Even with full-time work and part-time grandchild care, some grandparents manage to see their friends and travel regularly. Heidi, age 59, cares for four year-old Max, who has Down syndrome. Though she works over 50 hours a week, she has plenty of time to take care of household chores, make doctor visits, and stay in touch with friends. I see friends a couple times a month. My husband and I take a few vacations a year. Holidays we are always with the family.

She misses church, but that has nothing to do with the grandchildren. Rather, it has to do with the Catholic Church’s response to her divorce from her first husband. I used to sing at church with my dad and sister but since my divorce, I’m Catholic, and since my divorce I have issues with the church. I pray every day, say the rosary every day, but currently do not go to church.

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Taking Care of Him Never Stops Us from Our Social Life Similarly, Hanna, age 71, juggles work, care work, and a vibrant social life. She is from a middle-eastern culture that emphasizes social gatherings among friends. Even when Danny, who is now 19 and has autism, was little, she and her husband found the time to spend with friends. They did not forfeit their social life. Taking care of him never stops us from our social life. We just deal with it and go on. I even kept my job. Since my job was flexible, I was able to help a lot.

I Do Have a Social Life Similarly, Dorothy, age 59, is not forfeiting her social life. A widow, she cares for Johnny, age two, who has autism. She also continues to vacation, hang out with her girlfriends, and date. I’m actually going to Florida in two weeks. I’m going by myself. My bike is already down there. I’m going for a week. I do have a social life. I have some girlfriends. I was dating a guy for about six years.

Sometimes My Friends Say I Spend a Lot of Time with Them and That’s Right, I Do. So What! Some grandparents devote a great deal of time to their own social interests but say their first priority is their grandchildren. Bree, for example, enjoys friends, travel, and ballroom dancing. Bree, age 76, works part-time and cares for Ava, age 13, who has Down syndrome. Bree says her grandchildren always come first. She feels she has enough time for church, dancing, friends, and travel. But many of her friends complain that she spends too much time with her grandchildren and from her comments it is clear that she has become somewhat defensive about her choices. She has grown weary of their judgements. I go to church. And see friends, some. I love to travel, I don’t travel as much as I would like, I have gone on Road Scholar trips.8 I did a trip to Mexico and we passed out eyeglasses with the Lions club. I did a volunteer project in Mexico for street children, tutoring. I would like to travel more.

Bree feels she has struck a good balance between caring for Ava and living her own life. But her friends, and her dance partner, feel she is too devoted to her grandchildren. There is a big range in relationships between grandparents and grandchildren. I don’t judge. And some of my friends say I spend a lot of time with my grandkids. And I do. So tough. I’m glad I got to spend a lot of time with my grandkids and it just worked out for me that I get to be with them. . . My dance partner feels I spend too much time with the kids and not enough ballroom dancing with him, but he has gotten used to it. Sometimes my friends say I spend a lot of time with them and that’s right, I do. So what! That is what I want. And if they don’t want to spend as much time with their grandkids, that is fine, that is their choice.

My Social Life Was Affected Originally Some grandparents reclaim their social life after a period of intense focus on their grandchildren with disabilities. Rose, age 64, cares for three grandchildren with disabilities, including Mia who is eight years old, has cerebral palsy, and is quadriplegic. Initially, Rose was spending a lot of time with Mia’s family and forfeiting

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her social life, then she limited her time with her grandchildren and started doing more activities. My social life was affected originally. It did in the first four years because my whole life was helping them to function. . .Yeah, we go to church. We didn’t go to church at all, any of us, the first year because we were afraid of getting sick. But now, we all go to church. Yes. I have a lot of friends. Hobbies, not too many anymore. I play cards. I’m in a group that plays cards a couple times. I play bunco. You know fun things that retired people do.

Redefining Family as Social Life While some grandparents assertively protect their own social lives, making sure they spend time with people near their own ages, others redefine their social lives to be primarily, and at times exclusively, family oriented. Social lives shift in focus from old friends, hobbies, and travel plans, to adult children, grandchildren, and in particular, grandchildren with disabilities. We Have Huge Extended Family Here, and Spend Time with Them Often Like many of the grandparents we interviewed, Tessa has redefined her social life to be about her family and, in particularly, her grandchild with a disability. Tessa, age 61, cares for Leila, who is six and has Down syndrome. They share a house, with Tessa living upstairs, Leila, and her mother paying rent to live downstairs. After travelling the world in her military career, Tessa gladly retired and moved back to her hometown to be close to her daughter and granddaughter, her childhood friends, and her large extended family. Often, her social life revolves around Leila and her mother. She watches Leila after school nearly every day and on some nights and weekends. The three of them eat dinner together every night and spend a lot of time going shopping, to museums, festivals, and doing anything else that sounds fun. Tessa has time for herself, for appointments, and a monthly dinner with friends. But she occasionally misses the dinners and she has stopped going to church entirely. I have a group of friends that I grew up with we try to have dinner once a month. I don’t really go to church. They go to church, and are involved in that. I used to go a lot but don’t anymore.

Though they have lived in this house for one and one-half years, Tessa is still settling in. She says her physical and emotional health are good, but she needs to get a lot more exercise. She is excited that the family has now joined the YMCA. That said, her main priority there is to take Leila for swimming lessons rather than to work out herself. I’m still getting organized, unpacking, making this new house the way I want to be. Once I get settled in, I will do more. We just joined the YMCA, so I will be looking into classes there. Leila is signed up for swimming lessons, she is afraid of water but we live by a lake. It would be good if she could swim. We have huge extended family here, and spend time with them often. Leila is part of an enormous family.

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The entire extended family gets together often. They go on cruises and vacations together. The aunts and uncles often help with Leila, caring for her when Tessa and her daughter need to be elsewhere. Soon there will be another child to help care for: Tessa’s daughter has just applied to foster another child and Tessa and the rest of the family are prepared to be supportive. If I Was Interested in Someone to Become Romantically Involved, There Is No Time Out of necessity, Carole has redefined her social life to focus around her grandchildren. Like many grandparents who have custody of their grandchildren, she has nearly given up maintaining a social life involving people her own age in part because she is not around people her own age. How many other 74 year-olds are out and about with an 11 year-old? Carole feels a constant disconnect between the social life she is having and the one she should be, or could be, having. Carole, age 74, cares for her three custodial grandchildren, including Nico, who is 11 and has autism. Because she now serves as their mother, she finds herself in a role usually played by women much younger. Mothering her grandchildren keeps her active, focused on day-to-day activities, and too busy to be preoccupied with the aches and pains that are accompanying her aging. But it also keeps her surrounded by younger people. She sees little opportunity, for example, to develop a romantic interest. Having the grandkids is probably a good thing. There is no time to sit around and worry about whatever aches and pain I may have. In that sense, it gives me a reason to get up in the morning. But it changes my whole social milieu. The people who are in my age group are not with small kids. If I was interested in someone to become romantically involved, there is no time. And they wouldn’t have the same patience that I do.

I Have Curtailed My Travel Plans to Help with the Boys Betty has also redefined her social life to center around her family, particularly her grandsons. She has all but eliminated travel to care for the boys, and as she looks ahead, any possible travel is likely to include them. Betty, age 63, cares five year-old Carl, who has Williams syndrome, and his brother. She retired at age 60, much earlier than she ever intended, and moved two and one-half hours to be close by to help with Carl and his older brother. Betty loves to travel, but she is single, retired, and living on less than $60,000 per year. Moreover, she is on-call, and in fact always likely to receive a call, to help care for Carl and his brother. Still, if she could travel with her daughter and grandsons, she would. I have curtailed my travel plans to help with the boys. . . If I were queen for a day, I would travel. I used to take cruises, but I love being out in nature. I loved traveling. I would like to see all the national parks. I love being near the water. I’m hoping that when the boys are older we will take some summer driving trips, and visit some of those places. And I think my daughter would like to do that as well. Long periods in the car are hard. The age differences between the boys is hard. Four years between them.

Our Grandkids Never Stop Us from Doing Social Activities By redefining their social lives, some grandparents arrange all their social activities, including travel plans, with their adult children and grandchildren. Kelly is a 72 yearold, white grandmother, and has a seven year-old granddaughter, Maya, who has

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cerebral palsy. Kelly’s husband is wheelchair-bound and Kelly relies on her adult children to help with some of his needs. Kelly frequently goes on vacation with her adult children and grandchildren. She and her husband have recently taken a trip to Disney with their three adult children and grandchildren. Kelly finds it a great privilege to be able to spend so much of her social life with her grandchildren since she was not fortunate enough to grow up with grandparents. Also, she finds that the other sets of grandparents are missing out for not being involved in Maya’s life. I like being involved in their lives. I think Maya‘s other grandparents have chosen not to get involved and they are missing a lot. She’s a beautiful little kid. She has overcome so much. And they miss that. I didn’t grow up with grandparents and that I miss not having grandparents around that I grew up with.

Kelly is fine with redefining her social life since she voluntarily chooses to spend time with her grandchildren. Our grandkids never stop us from doing social activities or to do anything else because they are always included in our activities

I Just Want to Enjoy My Family Maria, age 71, is glad to refocus her social life around her family. She cares for Marco, who has Prader-Willi and asthma, and socializes with her family and at church. When asked about spending time with friends, Maria replied, No, I don’t do that anymore. I’ve done that already. I go to the movies with my son. I spend some time with him. And he takes me out every couple of months, something like that.

Maria had a vibrant social life when she was younger and a full circle of friends. Now that she is older and focused on caring for Marco, she does not see the need to have a social life outside of her family unit. I just want to enjoy my family. I’m involved with my church. So that’s between my family and my church. That keeps me happy. I don’t want to be running around. I did that already.

He Knows, Babies Come First Similarly Karen has redefined her social life to center around her grandchildren. That means the grandchildren share her bed with her husband, and the grandchildren come along for camping trips. Sometimes her husband, her closest friend, and her daughter, complain that she is too laser focused on her granddaughter Pam, age two, who has intellectual disability, epilepsy, and sensory processing disorder. She says her second husband is good with her children and her grandchildren. But caring for them leaves her little time to even talk with him. They often have chats at 3 am, over coffee, to talk about their weeks and any travel plans. Pam sleeps in Karen’s bed every night, and sometimes her youngest daughter does as well. She said her husband usually does not mind the lack of privacy, but does occasionally. I had a hysterectomy when I was 25. The intimate part it’s just, for some reason, it’s not there. He knows, he was there when I had my surgery. There’s no sex drive, but he’s been okay with it. Occasionally he’ll get irritated and, he’ll be like, whatever and walk.

Karen’s days and nights are quite busy. When she sees friends, it is usually with the grandchildren. She no longer has time to volunteer, and she has not gone to

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church since the pastor said her daughter’s seizures were scaring the other children. But every year she and her friends who also have children with disabilities take them to a state park for swimming and hiking and camping. Once a year at the first of June, we’ll go to a state park in another state and meet up and take the kids camping. And, they range from the oldest one in that group is 22. And, we all get together at least once a year and our kids get together, and to make sure that they get time out with others like them and understanding what they go through.

Karen has one friend, who also has a son with disabilities, who criticizes her for bringing Pam everywhere with her. Karen’s daughter, who also has disabilities, also complains that Pam always accompanies them. Karen’s friend says she should spend more time with her daughter and leave her granddaughter home with the mother more often. But Karen has no intention of doing that. Recently, she and her daughter were preparing for one of their camping trips. Everyone wanted to know if I was taking Pam. Yes. I’m taking Pam. Why wouldn’t I take her? Is what I told my friend. It’s been over a year since we took a family vacation. She told me, “Well she’s not your kid. Let her stay home with her mama.” Nope! The baby will cry the whole time I’m gone. So, of course she’s going with me.

My Life Is My Kids Similarly, Colleen has given up almost all other activities, redefining her family as her social life. At 62, Colleen works full-time and cares for all of her grandchildren, including seven year-old Sam and two year-old Kit, who have Down syndrome. Caring for grandchildren almost daily after her full-time job leaves her little time or energy for a social life. I don’t have much of a social life. I’m very involved with my kids. I’m tired after work. I don’t care. My life is my kids. I’m 62. Where am I going? My husband and I go out sometimes, but not too often. The older we get the more we want to stay home at night. I work full-time, I take care of nine grandchildren, and I’m tired. I do not have much of a social life. We don’t go to church, volunteer, belong to clubs. We are a close family. My social life is my family.

I Don’t Do a Lot of Social Things Like several grandparents we interviewed, Elsie, age 62, has redefined her social life to be about her family. Virtually all social outings include her custodial grandson Curt, age 11, who has ADHD and learning disabilities. Because she cares for Curt around-the-clock and has so few resources, Elsie does not do anything with friends her own age. Recently, she and Curt enjoyed a special outing when they went to the movie of a book they had read and loved. I don’t do a lot of social things, I could I suppose, but I don’t. We go to movies. We just went to see “Wonder.” We had read the book together already, and they read it at class, too. We were very anxious for it to come to the theaters, and it was great. Highly recommend it.

Elsie and Curt spend time with their large extended family, and she says while they are supportive they never offer any much-needed financial assistance or respite. They are all really supportive; they all are in agreement that this is the best place for Curt to be. They are verbally supportive but not financially, they never say let me take him for the

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weekend to give you a break. They never offer help. They have their hands full. I have a sister who is my biggest support and now she has her granddaughter and her granddaughter’s two kids living with her, so her hands are full, too.

Spending Time with the Kids Gets Me Out of the House In some ways, Betty feels that redefining her social life to be centered around her grandchild with a disability has actually improved her social life. She says that she is normally very reclusive and this has forced her to go out more often. She describes herself as too sedentary and a bit of a hermit. She feels that caring for her two grandsons helps offset both of these tendencies. She feels she is in good health and, given that she is single and retired, taking care of the boys increases how much exercise and social interaction she gets. I tend to be a computer nerd, a desk jockey, so spending time with the kids gets me out of the house, going to interesting places, and interacting with people. I tend to be a hermit. It is, overall, a very positive thing.

That said, because her daughter calls her for frequent last minute help with Carl and his brother, Betty is reluctant to commit to any regularly scheduled events. I’m trying to be better about being involved with other people but I have made a point of not getting involved in anything scheduled, at a specific time. I like it that way, and it works best to make be available at a moment’s notice for my daughter. Maybe I would be interested in doing something, but I put my daughter and grandsons first. I’m on call. They are first. It is my choice. This is not something that bothers me. . .I’m a hermit, I have made an effort to get to know some neighbors since I moved down here. I’m not outgoing. It is a real win win that they get me out of the house to go do things.

Indeed, being the on-call grandma for Carl provides Betty with just the excuse she needs to decline social events. But it also means that, reluctantly, she declines travel. I’m a bit of a hermit. I have time to do what I want. . .I frequently take him to school in the morning. I have curtailed my traveling for them. I love to travel. And I don’t because I want to be here to help with the boys. I don’t really want to spend time with other people anyway.

They Help with Our Social Life Indeed, some grandparents find that their grandchildren make them feel less isolated and motivate them to be more social. Paul, age 69, cares for Alex, age six, who has Down syndrome, every three weeks and also invites the grandchildren to come to stay with him and his wife. The grandchildren are like magnets attracting the neighbors and actually broadening Paul’s social life. My social life isn’t affected. Again, it is the opposite. When the kids come here. They usually would be here for a week. We have a fire pit in the yard. So every other night we would have a campfire. We roast marshmallows and have s’mores. The kids would go around the neighborhood and they tell their friends, “We gonna start at 7:30.” The neighbors would come. One night we had 15 people. We would set up chairs. We let the kids do their things and then they would run around with their glow sticks around their necks finding fireflies. Actually they are the catalyst of this. They help with our social life.

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Forfeiting Social Life Many grandparents who are caring for grandchildren with disabilities forego their social lives almost entirely. Some forfeit their social lives during brief periods of intense care work while others forfeit their social lives year round for many sequential years. Often they are cohabitating or custodial, have little to no respite, face serious physical or emotional health problems, and possess relatively few resources. Depleted, they tend to work hard and then rest. Mustering the energy and resources to do much else, over time, begins to seem unimaginable. The timing of such social isolation is particularly troublesome. Studies show clearly that strong social connections, volunteering, and attending church or other organizations are all strongly linked to better emotional and physical health.9 Moreover, for many, retirement is meant to be a time to increase, rather than decrease such social activities. Overwhelmed by caring for their grandchildren with insufficient resources, some grandparents watch their social lives dissolve. During the Six Weeks, I Don’t Make As Many Plans with Friends Some grandparents give up their social lives in toto, but only for certain portions of the year. For Cindy, it’s six weeks of intensive care work followed by several months with a full social life. At 69, Cindy regularly cares for Sara, who is four and has autism. Cindy and her husband have plenty of time to travel, volunteer, and see friends, except when the maternal grandmother takes her six-week break. Then, Cindy babysits four afternoons a week and there is little time or energy for social plans. Usually I have plenty of time. But when I’m babysitting her four afternoons a week, during the six weeks the other grandma goes home, then I limit the rest of my schedule. During the six weeks, I don’t make as many plans with friends. When she was younger, before she started special ed, they would bring her to our house for full-time, all day babysitting whenever the other grandma went home. She never napped, I would realize it was noon and I had not brushed my hair. Those days were tiring. She is not an easy child to relax around. Except when Daniel Tiger is on. But I will not let her watch that all day.

I Don’t Volunteer Like I Used To For Dawn, it is six months of intensive care work and then she tries to return to her social life. But she finds that returning after such long absences is easier said than done. Dawn, age 70, cares for Rob, age nine, who has cerebral palsy. Dawn lives out of state but spends about six months out of the year at her daughter’s house to help with Rob and his sister. Regrettably, she is often too tired to volunteer or go out with friends. I don’t volunteer like I used to. Before Rob was born I was on the board for our food shelter here and I worked there several days a week, I drove people to doctors’ appointments, and I helped at an Alzheimer’s clinic that they run where people drop their people that have Alzheimer’s and I would take care of them during the day. I don’t do that anymore because when I’m home I need that time to just socialize and recoup and not be giving up myself. I need to fill back up instead of giving out. My husband volunteers more than I do, he still drives people to doctor appointments and works at church and serves at funeral so he’s become more of the volunteer here at home and I don’t go much.

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It Definitely Really Was Tough, But That’s What You Do Others forfeit their social lives for years on end. Jill has given up her dream retirement home, travel plans, intimacy with her husband, and visits with her mother and sister to care for her granddaughter who has disabilities. Jill, age 48, cares for Minnie, who has Down syndrome, a heart defect, and an intestinal disorder. Jill and her husband and sons moved to live near Minnie and she now works full-time from home and cares for Minnie around-the-clock several days a week. She is far too busy to take proper care of herself, much less go out with friends. Besides she does not have friends near her new home because she left them all behind when she moved. She has been delaying needed medical and dental treatments, gone months without a haircut, and has little time to tend to her sons, clean the house, do laundry, or play with the dogs. I have my boys here that help, but there’s definitely a strain. Dishes don’t get washed as quickly as they normally would or get put in the dish washer, laundry doesn’t get folded as quickly as I like to. I haven’t seen my lawn in six months, so I don’t know how that’s going—I haven’t been out there. I also have dogs here too so I don’t feel like I spend any time them either, and they’re kind of needy.

She has no time for a social life. Her husband travels a lot and when he is home she is busy with work and caring for Minnie. She says there is little room for intimacy, but that he is supportive. He’s pretty supportive, so, as much as it sucks, I guess, you just do what you gotta do. It’s probably a little harder on him than me—he’s a little younger than I am.

He is about to leave for intensive training so she will not see him for months. She is close to her family but they are all very busy with their own responsibilities. All of her friends live far away. Jill and her husband had built a beautiful retirement home near her friends and she had just moved in when Minnie was born. She moved back, near her daughter to help. We were off grid, so she couldn’t move there. We didn’t even have electricity. Our power was battery powered. There’s no way with her. Plus, we were by boat, the only way you could get to our house was by kayak, so there was no way to bring an infant out there. Plus, her husband, my son-in-law, works full-time here anyway, so. Yeah. It was a big deal. It definitely really was tough, but that’s what you do.

Not only did they give up their retirement home, her older son had to change colleges and her younger son had to become homeschooled on-line. It was hard for all of them. Last weekend she had to cut her son’s parent weekend short to return to care for Minnie. She now rarely has time to game with her sons, an activity they all have treasured over the years. She says her daughter would like to ask her to do more but knows she really cannot. Jill did manage to get away and see her best friend right after Minnie was born. She’s been amazingly supportive. They put a GoFundMe together for my daughter. They’ve been great.

Though she rarely has any time to see any of them, Jill is grateful for how supportive her family and friends have been since Minnie’s birth.

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I can’t really say enough for family and friends stepping up for her since she’s been born. It’s been wonderful. I have a lot more faith in my family and friends than I did before her. Even her in-laws, I definitely see a change, you know, we don’t have a choice but to be together for her at this point.

I Can’t Do a Whole Lot, So a Lot of Stuff Gets Put Off Till the Weekend Similarly, Connie she says she has no social life whatsoever. In fact, she rarely leaves her house. She has few friends, but that she does not mind so much. What she does mind is that she rarely has time to get things done around the house. Connie, age 57, cares for Andy, who is two and one-half and has cerebral palsy, at least 50 hours a week. Andy and his mother live with her and Connie watches Andy most of her waking hours. She finds it hard to take care of paperwork and cleaning. Everything piles up on the weekends, and then that leaves her feeling a bit overwhelmed. She is constantly balancing Andy’s needs with her own. Sometimes I just kind of have to let him sit in his chair, and he doesn’t. If you’re not paying attention to him too much, if he can’t see you, I can’t say he cries, but he does get fussy. So, I can’t do a whole lot, so a lot of stuff gets put off till the weekend. Then I’m stressing trying to get the laundry done, and grocery shopping done, and dishes put away, just everyday stuff that you take for granted. You think you’ll have time, but you run behind. Like Vacuuming, he does not like vacuum. I think it scares him, so I can’t vacuum. . . I get the time to get the things done, I just can’t do them when I’m watching him. He doesn’t, not that he doesn’t allow you, he’s not going to cooperate much unless I’m right there or near him. He really depends on both of us all the time for everything, everything really.

The seriousness of his condition limits their mobility. They rarely leave the house. She makes a point every weekend of getting away from her home by herself, not because she wants to be away from Andy, but just to be outside her four walls. Still, when she is on her own, she thinks about Andy and her daughter. I know she takes good care of him, but I’m always thinking, what’s he doing right now. He should be eating right now. So, I’m not ever really away.

They seldom go out to have fun because transporting Andy is so challenging. They belong to a church they like and would like to attend again, but transporting and tube-feeding Andy have prevented them thus far. She hopes as he grows older, and perhaps becomes more mobile, they might be able to return to church. I Don’t Really Go Out Much, with Friends Grandparents, especially if custodial, often forego social lives because they have little to no respite. Lizzy has no one who will take her grandson overnight, and only a few who will take him for an hour or two. At 55, she has custody of Mark, who is 12 and has ADHD. She has forfeited her social life almost completely. When Mark was younger, her father and step-mother would watch him but now they are retired and travelling. I don’t have much back up anymore. But he is old enough now to come home from school by himself. He was in summer camp. I don’t really go out much, with friends. I have friends at work, from my old job, but I really don’t go out with them because I live so far from work. I have some neighbor friends who will take him to the flea market, or wherever they are going. He tries sleepovers at friends’ houses, but he always comes home at one in the morning, so

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we have decided he just needs to sleep here. It’s not fair to the other parents to have to bring him one in the middle of the night.

Though her last job allowed flexible scheduling, she used nearly all of her vacation and sick days to care for Mark. There were few days off left for her to make plans for herself. When I was working most of my days off were for my or Mark’s doctor appointments. We rarely took a day off for fun, usually for doctor appointments for one of us. I would have to use most of my vacation to take him to Pennsylvania to see his mom every other year, but we had a few holidays off.

I Gave Up Even Trying to Build Friendships Custodial grandparents, in particular, lament the loss of friendships and social activities with people their own age. Kim, age 59, cares for Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. Raising two grandchildren has usurped their time, energy and money. They have virtually no social life now and she says that those who are not raising their grandchildren do not understand. It so sad. There is a huge loss of friends. People your own age, they are not raising grandkids so they are off traveling and doing cool stuff and we have to say no because we can’t afford it and we don’t have anyone to watch the kids. I have no women friendships anymore. I go to church but that is about all. I really went into a funk I gave up even trying to build friendships. No one gets it. To be a grandparent raising kids. No one else gets it. . .I used to pray and I used to like it, to pray with others, so then I joined a prayer team at church and I built a few relationships that way. But there is no one I could call up to say, let’s go to lunch. I have no friends.

Kim and her family used to travel all the time because she worked for an airline and a travel service and they could do so at very little cost. But she gave up her career to care for the grandchildren because they had so many care needs. And now her husband travels for work. They have depleted their entire retirement account and they have no money left to travel, with or without the grandchildren. My husband and I can’t afford a vacation. All that time and money has to go to other things. Three years ago we stated going to do some fun things with the kids, take them to the beach, local things that are less expensive. Nothing big like taking them to Disney. We used to travel a lot. But we don’t do any of that now.

In addition to losing touch with friends, Kim has lost touch with her and her husband’s adult children and their other grandchildren. They live all around the country and she does not have the resources to travel to visit them. Moreover, they resent that all of her time and energy is devoted to these two grandchildren and not her 14 other grandchildren. She says the adult children are angry and resentful and do not come to visit often. On the rare occasions that they do visit, visits are often tense. Additionally, Kim has lost touch with her own mom and sister and misses them a great deal. My mom lives far away, and my sister takes care of her. She and I talk each month by phone but I don’t see her very often. I wish I did. We used to go to lunch, do things. I miss that.

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If Something Happened and John Got Worse, We Would Be on the Next Flight Out of There For some grandparents, it is the seriousness of their grandchildren’s health issues that causes them to limit or forfeit their social lives. Doris, age 55 provides extensive care for John, age 11, who has atrophy of the brain, Lennox-Gastaut seizures, and visual and hearing impairments. Doris, who has MS, assists with his feeding tube, ventilator, tracheotomy, and catheter. She rates her physical and emotional health as fair to poor. She is concerned about many things, including that she is not getting enough exercise, that she routinely cancels her own medical appointments to accompany John to his, and that they will run out of money for their own old age. She is so busy caring for John that she has very little social life at all. When he is in the hospital, which is often, her friends tell her to take a break but instead she is by his side at the hospital each day. She says she feels calmest then, when the staff is caring for him and it is harder when he is at home with his parents. Last year she did take a trip to Ireland but she said she put a lot of effort into preparation for separation from John. Her concerns about leaving John were so pronounced that up until the last moment she almost did not go. I left the country. Went to Ireland. I almost had a nervous breakdown doing it. Well, all the ducks had to be in a row. I was actually very anal about it to be honest with you. I had to make sure that we had international calling. I had to make sure I had access to be able to talk to anybody about John’s condition. Anytime, day or night. If something happened and John got worse, we would be on the next flight out of there. No matter what it took. . .I wouldn’t leave, I honestly didn’t even know I was going to go for sure until that very morning when our flight was supposed to leave. I wouldn’t commit. Because, I wanted to make sure John was still doing okay that morning. If he were not doing as well as he was doing, I wouldn’t have went, but he was doing well.

I Hardly Do Anything Because of That Arlene has given up her job and nearly all of her social life to care for her grandson. At 55, she cares for Carl, age eight, who has cerebral palsy. She quit her job to care for him at least 28 hours a week. She says she has little time for a social life. Even more so now, since her husband fell and broke several bones and cannot care for Carl or do much around the house. She has had to take on even more of the household chores, including mowing, while he recovers. Virtually everyone she knows tells her she is doing too much for Carl and not enough for herself. She was supposed to be on a vacation with her sister at the time of the interview but had to cancel to remain home to care for Carl. She no longer volunteers and rarely sees friends. I don’t ever volunteer anymore because just can never know if it works out, you know? I hardly do anything because of that. Yeah, I don’t see friends much at all because of that. Because, if I wasn’t here, I’m the number one to go to if things don’t work out. Otherwise my daughter would have to come home from work, and then if she don’t get enough hours in she doesn’t get her health insurance and then it wouldn’t really work out.

She says that most members of her extended family think she is doing too much for Carl and they are worried about the impact on her. But she does not feel she has much choice. She misses seeing her parents and siblings but traveling with Carl is just too difficult.

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I think it’s mixed feelings with everybody. And, I think, even my parents and my siblings think that it’s too much for me, and that we should be looking for other avenues and stuff, but we haven’t yet. Not really, we’re not really, we’re four hours a part so we still speak on the phone. . . I’d probably see them more if I didn’t have to take Carl because I’d be able to go there more. But it’s a lot of work for him to travel so we don’t go that often.

I Miss Being Social Some grandparents move to provide care for their grandchildren with disabilities and this often means leaving jobs, homes, friends, churches, and social activities they have been nurturing for decades. Starting over in middle age, particularly when providing intensive grandchild care, can be tricky. Linda cares for George, age five, who has Down syndrome. As a dental hygienist, she spoke with people all day long, knowing many of her clients for as many as 30 years. Now a retiree, she spends much of her day caring for George and his younger brother. She misses adult conversations. I miss being social. . .At this stage of my life, I miss the social life. That is the hardest thing for people to understand. I’m healthy and active and I wake up ready to take on the world. But the biggest thing is I miss people. George is around people at school, he has his time with people, but when I have him it is usually me and him. Maybe his brother. I work with him. We do puzzles, therapies, but it is not an adult conversation.

Linda and her husband retired and moved with their daughter and her family to a new state with the hope of securing better education, medical care, and services for George. At 61, it is tricky to make new friends, especially when your grandchild has disabilities. A lot of my new neighbors, since we moved here two years ago, are still working or don’t have a grandchild with special needs. It’s a whole different ballgame. Even conversation. If you don’t have a grandchild with special needs you have no idea about it. The weight that it can carry. And so my daughter and I are extremely close and I’m her rock. That is just how I am. I’m going to be there to help her get through. This was not decided, this is how my life will go, but everyone else is typically more important to me than me. That is fine with me.

Building a new social life is also more challenging now because they moved from a small town to a large city. They have moved from knowing everyone to knowing almost no one. We lived in a small town, with a small church, we knew everyone. We had lived there 32 years. We move and everything is huge. We do go to church, but moving has been tough. This is a much bigger city than I’m used to. Three masses at our church and all are packed with hundreds of people. It’s a whole different ballgame for us. Here we don’t see a familiar face. We have talked about this with my daughter but I don’t want to be a broken record. I had this silly notion that I should get a little job to make friends, but I was turned down, working weekends at Kohls, and that was crushing. I wasn’t able to work enough hours for them to hire me.

She says they keep trying. They go out to dinner occasionally with some neighbors. And they are planning some trips. We take at least four small trips a year, to see family that lives about ten hours away. We take a weekend and see the fall leaves and a football game. We went on a cruise. We have some friends we like to travel with and we do that.

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But, they must plan ahead because they are the main care providers for George and his brother. They have asked their daughter to secure a backup provider but thus far that has not worked out well. Her ability to broaden her social life hinges on her daughter’s ability to find additional sitters. We have to plan to be away. We are the main ones that our daughter depends on so trips can be a lit bit more of a struggle. They have not found anyone else that they are comfortable with. We requested a back-up person just in case, but she has not found anybody. They tried but it did not go well. His brother is easy. George does not like change. They have not found anyone.

This Is a Hard Age to Move Away from Friends and Church Like several grandparents we interviewed, Chris and her husband moved to care for their grandchildren with disabilities. They gave up jobs, neighbors, friends, memberships, church, and much more. They are struggling to rebuild any kind of social life whatsoever. Chris, age 67, cares for Wendy, age ten, who has anxiety disorder and has autistic symptoms, and Mark, age seven, who has ADHD and Oppositional Defiant Disorder. Chris’ daughter asked her to retire early and move cross country to care for the children. Her daughter and son-in-law bought them a house. They care for the grandchildren after school and sometimes on weekends. Between their own poor health, the demands of caring for two grandchildren with disabilities, their tight finances, and moving at an older age, they have not really been able to develop a social life. And they miss their old social life greatly. This is a hard age to move away from friends and church. It is a hard age to create a new support system. We moved here a few months ago, and we have none. It’s harder than we thought it would be to make new friends, to fit into a new church. We have not gone back since we moved, but our son is coming to visit this week. I’m really glad about that. It’s a little too painful to go back because we left so much. Also, travel is hard, my husband has a lot of medical equipment and we have to be near a hospital. He is on the transport list. We are pretty tethered here.

As they settled in, they found a church they liked and joined a small group, so now they attend each week and love it. Still, Chris says they need a few more social obligations. She finds she has really been missing her job. She appreciated the income, but more she appreciated her colleagues, clients, and the opportunities to share her expertise. She feels she has none of those now and has not been able to find any new outlets. I was a leader at work, teaching others, people came to me, I was older, wiser. I don’t have that any more. I’m not using my skills. I’m a born teacher and I’m not using that. It’s a big adjustment, more than I thought it would be. I didn’t think it would be so hard. I feel like I should volunteer. I should teach classes on mental illness at churches, they do a terrible job, it would be good. I have all this great stuff on mental health, but I’m not using it, it just sits there. Kind of sad.

Chris says their son and most of their friends have been supportive of their move and grandchild care commitments, but her sisters have been cautionary. My sisters are supportive but they think we do too much. . .My sister said, “I certainly hope you are not watching them all day in the summer.” They are a bit concerned that we will be exhausted from taking care of the kids, and not have a life of our own.

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Chris notes that while she and her husband have forfeited much of their social life to move and provide care for the grandchildren, her daughter and son-in-law have not. They both maintain very busy professional, social, and service schedules. She wishes her daughter would stay home with her children more, reducing the demand for grandchild care and freeing Chris’s schedule. I worry about my daughter and son-in-law burning the candle at both ends. They are too busy, too involved in too many things. She was two-year secretary of the PTA and they are very involved in their church. She is always on the board and going to meetings for this or that. She was going out to tea, out to supper, out for a conference. Never ending. I would think I almost have to make an appointment to call her. I think some of those things you could let go a bit, while your children are younger, but that is a difference of age. Age tells me those things will still be here.

Chris said that she did not think her daughter was cut out to be a full-time parent of two children with disabilities. Even when her daughter is home with the children, she finds excuses to escape, often bringing them to Chris’ home for a visit. Often on her days off, Chris prepares meals for the entire family. I Don’t Really Have a Lot of Friends Some grandparents simply do not have enough resources to sustain a social life. Candi has lost her husband and expects to lose her sister soon. She has little income and has declared bankruptcy. She is in poor health. Her only real contact with people is through her job. At age 61, Candi cares for her custodial granddaughter Aly, age 12, who has ADHD and asthma. Between caring for her granddaughter for 12 years and working full-time since her husband died, she has little time or energy for a social life. I don’t really have a lot of friends. I work with people. My sister and I are really close, she is my best friend. And now she is very sick and we know this disease will kill her soon. She and I have always had each other’s back. Now both of our husbands are dead. And our kids take advantage of us.

My Son Doesn’t Get It That I Take Care of Him Sometimes 24/7 Lack of resources, particularly transportation, causes some grandparents to curtail social lives. Denise and her grandson could sustain much more robust social lives if they had a car. Denise, age 55, lives with her only son and grandson and provides about 50 hours a week of care for Nelson, age ten, who has autism and ADHD. Finances are tight and the three generation household now has just one car, which her son drives to work six days a week. As a result, she and Nelson are virtually housebound. She has no social life except her son and grandson. She is no longer able to visit her sister, who has severe disabilities and lived with Denise her entire life but has now gone to live in a nursing home. She can’t even take Nelson to the park. When I had my car and he was in school, I usually went and visited my sister. I spent a couple days a week visiting her. So in the summer time, not having a car, I can’t do that now so I’m kind of shut in. And, so is he, so I kind of feel sorry for him. Not being able to see my sister because she’s not in real great health. Not be able to take care of Nelson and get exercise or play on the jungle-gym.

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She says she is religious but has not gone to church. She rarely goes anywhere at all. Her son, who she says has undiagnosed autism and lacks empathy, will criticize her for not getting out and doing things, but fails to see that she is always on duty with Nelson and has no access to a car. I said, “How do you think I feel? I’m here 24/7 with him.” He was always complaining that I don’t do go out or do nothing. Just, my son doesn’t get it that I take care of him sometimes 24/7.

Her social life is now very narrow, but she cares deeply about Nelson. I like doing it. I like taking care of Nelson. I’d miss him. Just being there for him when he needs something or wants to talk to you or answer the questions that he asks.

They Ask, How Long Are You Going to Do This? Between working part-time, and caring for Carly, age two, who has Williams syndrome, her other grandchildren, and her father now that he has had a stroke, Marina has nearly given up having a social life. I’m not a very good friend anymore. I do have friends and they understand. We do what we can. My friends and neighbors think I’m crazy. They say those are too long of days, they don’t understand. They think I’m crazy. They ask, “How long are you going to do this?” But some don’t have grandkids. They say, “I know you can’t go to the movie cuz you have your grandkids. I’m worried about you.” But I’m not worried.

But Marina believes that once Carly begins preschool next year, she will be able to take a month off. She is hoping to rebuild her social life and stretch her wings. I have not traveled in five years, since my husband died five years ago. Next year I’m going to go on vacation. . .I already told them I’m going to take a month off. I definitely will go somewhere and take a month off. I need time to go through old things, do genealogy research, clean out closets. I need time for in-depth things. I think once Carly starts the early intervention at three, then I could take a month off.

Redefining Social Lives Grandparents were well aware of the degree to which they had adapted social lives to care for grandchildren with disabilities. Some felt minimal impacts on their social activities and memberships mainly because they did not provide so many hours of care or they fiercely defended their own time, energies, and activities. Several felt significant impacts but they did not seem to chafe because they had intentionally redefined their social lives to include predominantly, or exclusively, their own families. They still travelled, but instead of going with friends their own age they took their children or grandchildren. Some grandparents, particularly a few that tended to be homebodies, reported that redefining their social lives around their families had actually expanded their social worlds, as they attended events more often and in a wider variety of venues. But many found that their social worlds had narrowed. They had forfeited their social lives almost entirely, giving up time with old friends, church, volunteer work, travel, and more. They were diverting what

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time, energy, and resources they had to caring for their grandchildren with disabilities. Some were trying to broaden their worlds again but their efforts were tentative and generally not very successful. It can be tricky to rebuild a social life in your 60s and 70s. As cumulative inequality theory suggests, for those with less income, education, and experience, the demand for care may be too great and the alternative resources too few. Such grandparents are simply too tired to pursue social activities.

Notes 1. Findler (2016), Harrington Meyer (2014), Luo et al. (2012), Igel and Szydlik (2011), Baker and Silverstein (2008a, b), Hughes et al. (2007), Doblin-MacNab (2006), Turner (2005) and Presser (1989). 2. Findler (2016), Harrington Meyer (2014), Miller et al. (2012) and Platt Jendrek (1993). 3. Noy and Findler (2016), Williams (2011) and Minkler et al. (1994). 4. Samuel et al. (2017). 5. Tang (2016). 6. Skinner (2000). 7. Red Hat Society https://www.redhatsociety.com/ 8. Road Scholar. From 1975 to 2010 known as Elderhostel https://www.roadscholar.org/ 9. Tang (2016), Baker and Silverstein (2008a, b), Hughes et al. (2007), Doblin-MacNab (2006), Turner (2005).

Chapter 14

Emotional Ups and Downs

Caring for grandchildren with disabilities can be both rewarding and taxing. It may generate very positive, and very negative, emotional impacts. Often simultaneously. For some grandparents, care work is almost entirely positive, in part because they so enjoy spending time with their grandchildren and in part because they know they are providing much needed care and their adult children appreciate it profoundly. Providing care gives some grandparents abundant joy that, in some cases, relieves their poor health and sadness and gives new purpose and meaning to their lives. They tend to have enough resources to provide the amount of care needed. These families tend to have close emotional bonds and clear channels of communication, even if they also face health and financial challenges. For other grandparents, caring for grandchildren with disabilities creates emotional distress. Some are reluctant to accept the diagnoses and to let go of the visions they had of grandparenting. Some are concerned about the impact on their own health, their marriages, and their adult children’s wellbeing. Some do not have sufficiently good health or deep enough pockets to provide the amount of care and support needed. Some are overwhelmed by becoming custodial grandparents and providing so much unexpected care at such a late age. And some feel tremendous frustration and disappointment that their adult children are taking advantage of them and failing to express appreciation.

Impact of Care Work on Grandparent Emotional Wellbeing In general, studies show that the impact of caring for grandchildren with disabilities is decidedly mixed.1 While some studies find that grandparents benefit emotionally from providing care for their grandchildren, others find just the opposite.2 When grandchildren have disabilities, studies show that grandparents often describe positive emotional benefits such as joy, love, satisfaction, and rewarding relationships.3 Some also describe more adverse emotional impacts. Some studies suggest that

© Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_14

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grandparents assuming parenting roles experience adverse mental health effects.4 Studies show that initial reactions of grandparents to grandchildren with disabilities might be distress, sadness, anger, depression, anxiety, and uncertainty.5 One comparative study of Latino grandparents caring for grandchildren with disabilities and those who were not found that the level of depression was higher among the former group.6 Similarly, research on the experiences of stress among grandparents of children with and without intellectual disabilities found that the latter group had more negative feelings.7 Differences in the emotional impact of caring for grandchildren with disabilities is likely shaped by a wide variety of factors including income, education, employment, other care work demands, health, severity of disabilities, and how far into the transition of providing care grandparents are at the time of the interview.8 As cumulative inequality theory suggests, the emotional impacts may also be more severe for grandparents juggling multiple roles with fewer resources. For those with sufficient resources, particularly good health, financial security, and peaceful family ties, roles may be complementary and enhance quality of life.9 But for others, multiple roles may conflict. Some are sandwiched, caring for grandchildren and frail older relatives; others are club sandwiched, caring for even more generations at once.10 Because they may have poorer health and fewer financial resources, grandparenting may be more stressful for grandparents who are women, Black or Hispanic, less educated, lower income, and custodial or coresidential.11 Increasingly, scholars suggest that differences in the impact in grandparenting are often linked to differences that preceded the care work, notably differences in resources linked to conflicting roles, gender, race, class, and coresidence.12 Generally, those with less income, education, and experience are more likely to report more adverse emotional impacts. Custodial grandparents tend to report some of the most adverse emotional impacts, though one study comparing grandparents who were raising grandchildren with disabilities to grandparents who were raising grandchildren without disabilities found that there was no significant different level of depression between the two groups.13 Recent studies indicate that the emotional impacts may be more pronounced during transitions into and out of grandchild care. Notably, custodial grandparents often report the greatest emotional distresses near the beginning and end of their terms, with these stresses moderating after each transition.14 New custodial grandparents typically need to provide immediate housing and food for grandchildren; communicate with schools, welfare programs, day cares, and medical providers; and navigate troubled relationships with adult children, who may be imprisoned or institutionalized, and distressed grandchildren. Over time, routines develop and stress levels often subside. But as custody nears the end, grandparents often fret about how well their grandchildren will be tended to and whether they will need to run this entire cycle again.15

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Positive Emotional Impacts Caring for grandchildren with disabilities can have a very positive emotional impact on grandparents. They get to spend time with their precious grandchildren. They play games, swim, hike, color, picnic, go to the park, and share meals. The important thing is that they are together and, at least most of the time, enjoying each other’s company. For some grandparents, the joy they feel spending time with their grandchildren helps divert their attention from the aches, pains, and loneliness they may otherwise feel. Indeed, for some providing care improves emotional health and adds new purpose and meaning to their lives. But, Then Just Seeing How Happy of a Kid He Is For some grandparents the positive emotional impact is linked to simply spending time with their grandchildren with disabilities. When their grandchildren are happy, they are happy. For Arlene, it does not matter so much what they do, it is that they are together. Happily. Arlene, age 53, cares for her coresidential grandson Carl, age eight, who has cerebral palsy. She quit her job to care for him at least 28 hours a week and says playing video and computer games with Carl keeps her young. I wouldn’t be sitting down play games and learning games on the computer if it wasn’t for him because, you know, I don’t do that kind of stuff.

And while seeing him face so many difficult challenges is difficult, seeing him grow up has very positive impacts on her emotional wellbeing. It’s hard to see him go through the things he does, and helping make decisions medically, and going through the seizures and being at the hospital and watching him go through the things he does is definitely negative. But, then just seeing how happy of a kid he is, you know seeing him grow every day is positive.

I Love Being with Them Similarly for Bree, age 76, spending time with her grandchildren, including 13 yearold Ava who has Down syndrome, makes her happy. She works part-time and regularly cares for Ava and all of her grandchildren, taking them on outings, and enjoys it enormously. She says the emotional impact on her is entirely positive. All positive. I love being with them. In the summer we go to the park and I play with them in the water, we go on hikes, have picnics. When they were little I was making sure they were all with me, safe, but now we are just there swimming and playing. And they are all good swimmers. Ava is a tremendous little swimmer and she tries hard, and is doing great. The schedule changes every year, but I have always taken care of the grandchildren, sometimes more or less, and I really enjoy it.

When They Are Around I Have No Pain, They Have Helped Me with My Healing For some, the absolute joy of being with their grandchildren turns their attention away from their own discomfort. Ina was reluctantly facing an empty nest when she was injured and began to experience terrible pain. Now, spending time with the grandchildren eases her pain substantially. Ina, age 46, worked as an RN for 20 years, but hurt her back on the job and following the corrective surgery her leg

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was paralyzed. She is medically retired and receives disability benefits. She and her husband care for Ray, age three, who has Down syndrome, and his sister several times a week. We go get the kids whenever we can, both of them, to give my kids a break. We probably bug our kids a bit too much about getting them.

Sometimes she accompanies her daughter when she takes Ray to therapy, but most of the therapy is now done in school. She misses the days when he used to have therapy at her house. They used to do some of it here at our house and that was lovely. Having the kids here is a therapy for me, it helps me recover. I’m home by myself all day, and I feel bad they are in day care. Now that I’m not working, I wish I had them all the time but my body will not allow. Of course if I was not disabled I would be working and then I could not watch them anyway. We both miss them. We both want to go get them.

Given how limiting her disabilities are, she feels that caring for Ray and his sister has had an entirely emotional impact on her and helped her deal with her pain and her own limitations. I think caring for them has kept me lifted. With this disability it has been so hard. But when they are around I have no pain, they have helped me with my healing. I cannot imagine not having them around. It’s been absolutely positive physically and emotionally. And they have adapted through intuition and they run to my husband and make him pick them up but not to me, they know I can’t. They treat us different, they never ask me to pick them up because they know I can’t. My daughter will ask, are you sure it’s not too hard on you? But it is not, they let me sit down and they climb on my lap. They know.

While she is frustrated by her injury and lack of mobility, she feels it might have been a mixed blessing. Though it forced her to give up work she now has more contact with the grandchildren. I really did not see my family much before I got injured. I was working too much and only saw the grandkids late evenings and weekends. I was traveling all the time and did not see them much. Now with the injury I see them much more, it was a bit of a blessing, so I think it is the best.

Providing so much care to Ray and his little sister has given Ina and her husband a renewed sense of purpose. Becoming empty nesters was not very appealing to them and becoming grandparents at relatively young ages lifted their spirits. We were depressed about being empty nester very young, and my husband was depressed about it. He did a lot with my son and once he grew up and moved out, my husband really missed all those activities. The grandkids have really helped him too, a lot of activity replaced after my son left. We were getting ready for the next stage of life, as empty nesters, but then I got injured. We had hoped to travel but my back took that away.

It’s Just a Lot of Fun to Be Around Them Similarly, Belle says that spending time with her grandchildren dulls her loneliness. Belle, age 73, cares for her two granddaughters, one of whom is diagnosed with autism while the other is being tested for an epileptic disorder. With the girls I think they help me emotionally. I live alone, I’m alone, and I have my girls it’s just a lot of fun to be around them. If anything, it helps me, for them to be there.

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Feeling Appreciated For many grandparents caring for grandchildren with disabilities, the positive emotional impact is linked to feeling appreciated. They know they are providing much needed care to their grandchildren with disabilities, and much needed support and relief to their adult children. While the care work may be difficult and tiring, particularly for families with numerous health problems or limited economic resources, it gives a renewed purpose to their lives. For many, the positive emotional impact comes from knowing they are making such substantial contributions to their progeny and that their progeny are grateful for their efforts. Adult children have a variety of ways of showing their appreciation to grandparents who care for children with disabilities. Sometimes they say thank you. Other times they express their appreciation with a smile, hug, or small gifts. Some adult children provide various types of monetary thank yous, including covering the phone bill, bringing dinner, giving gift certificates, or including grandparents on trips. Generally grandparents do not want, or expect, gifts or compensation, but they certainly want, and expect, gratitude. I Know It Bothers Her, But She’s Very Thankful That We’ve Done What We’ve Done Some adult children may be reluctant to turn to their parents for assistance but when they do they often gladly let their parents know just how much they appreciate the assistance. Arlene quit her job to care for her grandson and she says her daughter appreciates all she does for them, but it is hard for her to ask for help. I truly think she does. But, I think it’s almost too much for her also. It’s just, it gets, it just gets and it builds and then she kind of gets depressed and she always says that she’s ruining our lives and stuff like that. I know it bothers her, but she’s very thankful that we’ve done what we’ve done, and that we’re here for her. . .She’s bought us some gift certificates to show her appreciation.

I Know She Is Appreciative. I Know She Is Only a few of our respondents received any compensation for caring for their grandchildren with disabilities. Connie receives a small stipend from the state. She and her daughter joke about whether Connie is on the clock or not. But the stipend is nowhere near as important to Connie as knowing how much her daughter appreciates her help. Connie, age 57, cares for Andy, who is two and one-half and diagnosed with cerebral palsy, more than 50 hours per week. She says her daughter appreciates all that she does to care for Andy. Often her daughter shows her appreciation by covering Connie’s expenses, such as her monthly phone bill, when Connie is unable to pay. She says her daughter also shows her appreciation by adhering to the schedule and making sure Connie gets time off from caring for Andy. Because she knows what it’s like to have to watch him all day long. She knows the regiment because she does it a lot on the weekend. I always tell her, “Now I’m off the clock, and you’re using the me-me time.” And, so, and I do it because I love him! Not that I don’t do it because I love him before, we have the easy CD waiver, so I get paid to watch him. And, that has been a godsend, believe me. Every little bit helps. But sometimes she’ll say, “Wait a

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minute, you’re still on the clock!” But I know she’s playing. But, I really don’t mind it. And, I know she is appreciative. I know she is.

She Shows Me That She Loves Me Maria is one of several grandparents who feels well-appreciated because her daughter shows her gratitude in a multitude of ways. Maria, age 71, cares for her grandson Marco, age 12, who has Prader-Willi and asthma. Her daughter showers her with love and gifts to show her appreciation. She shows me that she loves me. My daughter, when she goes on vacation, she takes me along.

My Daughter Really Appreciates What I Do Paula’s adult children express their appreciation with small gifts, and concerns that she might be overdoing. Paula, age 66, cares for Mike, age seven, who has autism and an epileptic condition. Paula has sold her house and merged her finances with her daughter to be able to build a house that is accessible to Mike. Mike requires nursing care around-the-clock and Paula provides daily care. She gave up her lucrative real estate business and moved to a new state to help her daughter with Mike. Given the loss of income, she appreciates the gifts of gratitude. My daughter really appreciates what I do. She tells me thank you all the time. She worries if I do too much. She gets me gifts. And she would take me out if we can find the time. She is very considerate. She gets me everything I need. She asks me if I want her to do anything special to me.

They’re Very Appreciative Dawn’s adult children express their gratitude in dozens of ways and this creates a very positive emotional impact. Dawn, age 70, cares for Rob, age nine, who has cerebral palsy. Knowing how appreciative they are for her care makes Dawn feel especially good. They’re very grateful and they’re always thanking us and as I told you they send me these mugs with pictures of the kids and when I’m out there they include me in things; I go with them to parties and stuff with their friends too, so yeah, they’re very appreciative.

They Say Thank You a Lot Jean’s adult children express their gratitude with elaborate birthday gifts and frequent words of thanks. Jean, age 70, travels one and one-half hours every weekend to help with her grandson David, age six, who has Down syndrome. This year for my birthday, they took us to the mountains. . .a mountain lodge. We have been there before and we loved it. So the kids took us there for a weekend. My daughter always provides money for my travel. They say thank you a lot.

They Do a Lot for Me Several grandparents noted that while they do not need gifts, they do enjoy expressions of gratitude. It feels good to know that their contributions are appreciated. Maureen says little gifts are fine but there is no need for anything big. Maureen, age 76, enjoys spending time with her granddaughter, Madge, who has autism.

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They do a lot for me. They’ll take me out to dinner, just different ways. Thank you. If her mom goes out of town, and if I have Madge for even just a little bit, she’ll always bring me a gift. If they both go out of town, I’ll have her for a long time; like the whole weekend. They always bring me something really nice from their trip. They have me for dinner, so just little things like that. I don’t need big time stuff. That’s all they need to do.

They Tell Us How Much They Appreciate Similarly, Ina appreciates words of thanks, and concerns about her health, but does not feel they need to express their gratitude with gifts. She and her husband actively pursue more time with Ray, age three, who has Down syndrome. Ray’s parents are very grateful. Ina, age 46, says even though they might intervene more than they would like, her daughter and son-in-law readily express their appreciation. They tell us how much they appreciate, they send flowers, bring gifts, and I feel bad because they should not do that. They give us movie tickets. Sometimes my daughter asks if it’s too hard on me, because of my back, so she asks, but it is not too hard. I think they think we do too much, that we ask for the kids too often. Three days a week, my husband comes home from work for lunch and on his way, he picks up Ray from school and takes him to day care. Sometimes my daughter might think we meddle too much. But their jobs are a lot further away, so they appreciate my husband’s shuttle service three days a week.

We Don’t Have to Say Much, We Just Know How We Feel Some families are so close that words are barely needed. Grandparents just know how much their adult children appreciate their efforts. Colleen, age 62, works fulltime and cares for seven year-old Sam and two year-old Kit, both of whom have Down syndrome. She says she knows her children appreciate how much grandchild care she provides. Yes they appreciate it. My daughters and I are pretty close. We don’t have to say much, we just know how we feel. And they will say, maybe you are doing too much. And the older the kids get, the less they ask of me. I tell them I don’t have small children every day, so if I want to babysit don’t worry, I don’t have to do this every night, so if I do one night that is ok.

They Are Very Appreciative For several grandparents, knowing that they are relieving the stress for their adult children, and that their adult children appreciate all that they do, is very gratifying. Anna, age 66, travels one and one-half hours each way to care for her seven year-old grandson Jason, who has Down syndrome and is being tested for autism. She has provided a great deal of grandchild care for her daughter’s and son’s children, and says they let her know often just how much they appreciate it. Sometimes her daughter worries that Anna is doing too much, but Anna is glad to help relieve some of the stress. Yes, she tells me how much she appreciates it. My son, too, he would tell you. They are very appreciative. I don’t take money. I don’t think they worry they are asking too much. Sometimes she will say, “Mom, you don’t have to do that.” I will have dinner prepared. I know she is tired, but she will say, “Oh Mom, you don’t have to do that.” I’m helping. I’m doing what I can to take the stress off of her. It is a lot.

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Anna feels that she is helping her daughter and her family maintain some regularity in their lives, which she feels is particularly important given that the demands of Down syndrome can shift frequently. It is a lot to maintain some order in your life. Every day with Jason is different or new. He has periods of time when he does not sleep, so she does not sleep. That is difficult when you still have to go to work and do the things you have to do. She appreciates my help. She will say. “Mom that is too much.” But I’m fine with it I do what I can to take the pressure off of her. I’m enjoying this. I enjoy taking care of Jason.

She Tells Me How Appreciative She Is When grandparents hear a lot of thanks, they feel that much better about the care they are providing. They do not want to be taken for granted, and when their adult children are constantly expressing gratitude, they know they are appreciated. Betty, age 63, cares Carl, who has Williams syndrome. She says her daughter is extremely grateful that she helps care for Carl and his brother. She literally tells me once a week. She expresses her gratitude and how glad she is that I’m here and a part of their lives. She tells me how appreciative she is. She says thanks so much. She does not take me for granted.

They Tell Me They Are Really Glad I’m There to Help Out Similarly Bree receives many expressions of gratitude. She says her daughter and her son very much appreciate how much help she provides caring for the grandchildren and they express it readily. Oh yes they appreciate it. They tell me. They tell me they are really glad I’m there to help out. Next weekend when she works all three nights, I will take the kids so her husband can go to a class Sunday morning. I read the scripture at church once a month, and then I will go over and help them. They have four kids and one has special needs, it can be a strain on their relationship, and they are so tightly scheduled, so I said that would be great. I don’t help my son as much now because the kids are so old, but I used to spend a lot of time with them, too. And I still go there every Monday for dinner and to see the kids, I bring the food.

I Know I’m Helping Her and That Is Huge For many grandparents, knowing how much their adult children appreciate their contributions is what keeps them going. No matter how tired they become, they are eager to help and their adult children are eager to say thank you. Rae, age 61, cares for Paul, age three, who has Down syndrome and immune deficiency. Yes, we get thank yous. We get hugs. They don’t assume, they always ask. That makes a difference. They just don’t call and say you are babysitting. They say are you free, can you watch somebody for so long. They know, and we feel it. I always get a hug and a thank you. We are here any time she needs me, she knows we will do whatever she needs. I check in and ask, do you need me any extra time, how does the week look? We have been doing this for so long. I’m there at a drop of a hat if she needs me. I don’t think she wishes I would do more, well maybe on weekends if her laundry is piled high.

While the care work may be exhausting, know that she is providing the care he needs, and respite for her daughter and son-in-law, fills Rae with purpose.

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I think it keeps me younger. It gives me purpose. I know I’m helping out. I know she needs me. I don’t really get more tired than I did at a day of work. I never feel totally exhausted. Sometimes I feel, oh that was a long day. But never exhausted. I think it keeps me young, keeps me going with a purpose. I know I’m helping her and that is huge. It’s hard to have a child that needs the care he needs, and all the time he has spent in hospital in three years of life, it’s hard.

They Are Here to Help If I Have Problems Kelly’s adult children express their gratitude for all of the care she provides by helping Kelly care for her husband when she is having difficulties. Kelly, age 72, cares for Maya, age seven, who has cerebral palsy. When she needs respite, or assistance, they help with her husband. All the kids have been very good. Our daughter-in-law stays with him when I need to go out. She will help me get him in and out of bed in the morning. She is much more reliable than anybody else. We used to have an agency aid and it was not good. They are here to help if I have problems and they are here with no problem.

“Mom I Don’t Know How You Do It!” One way that grandparents know that their adult children appreciate their grandchild care is when the adult children share their dismay about just how much work grandparents are doing. Recognition of her contributions has a very positive emotional impact on Carol; few want their contributions to be invisible. Carole, age 74, cares for her custodial grandson, Nico, age 11, who has autism, and his siblings. She appreciates what I do because at times when she sees me with the kids she would say, “Mom I don’t know how you do it!”

They Appreciate It. They Know They Can Count on Us No Matter What For some grandparents the emotional impacts of caring for grandchildren can be somewhat mixed. For Heidi, the early years when her grandson had so many breathing problems impacted her fairly negatively. But now that he is four years old, and more stable, she relishes the time with him and knowing how much her adult children appreciate her care work. Heidi, age 59, cares for her grandson Max, who has Down syndrome. Though she wishes she got more exercise, she says caring for Max and the other grandchildren has not adversely affected her physical health. In fact she thinks it makes her feel younger. But her emotional health has indeed been taxed by the many worries that accompany having a grandchild with Down syndrome and, in this case, breathing difficulties. Emotionally it was hard at first because I was concerned about Max in the beginning as a respiratory baby, it was scary. He had pneumonia at birth and then for a long time still breathed hard, it was really scary. For that first year we probably kept the kids 10 or 12 times or more and it was scary listening to him breathe. He is older and I don’t worry as much now.

She and her husband have a household income of just under $120,000 and would be happy to help if they needed financial assistance, but thus far the children have not needed it. She says her children are very appreciative of the help she and her husband provide. Oh they tell me, that they appreciate whenever we take the kids, or when they call because they need things and we go right over. They appreciate it. They know they can count on us

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no matter what. I wish I could do more for them but they never wish that, they always appreciate what we can do. Sometimes we just say, can we have the kids, before they even ask.

She Thinks, I’m Back Home with Mom, on Vacation, Mom Will Do It The emotional impact is mixed for Jane as well. On the one hand her daughter readily says thank you, on the other hand when her daughter is there for long visits she starts to take Jane for granted. Jane, age 50, cares for Jay, who is 17 months old and has Down syndrome. She works full-time and, because she lives eight hours away, sees Jay about one weekend a month. She says her daughter is appreciative of the care she provides for Jay, but sometimes takes for granted that Jane will take care of the household tasks. She thanks me, she appears appreciative. She will ask me do you mind, and plan ahead and ask me when she comes up if we can watch Jay so she can go to her high school reunion. . . But when she comes here for a long weekend, it reverts back to that, I’m just hanging out here, I’m on vacation, I don’t have to help. When they were here for a long time for his birth, I had to tell her, you have to help clean and cook. For a long weekend if she thinks it’s a vacation I don’t mind as much. But when they were here for months I got stressed being the only one cleaning up. I had to tell her, you have to help with trash and load the dishes, and do the laundry. That was the only stress. Clear up after yourself. She thinks, I’m back home with mom, on vacation, mom will do it.

Negative Emotional Impacts For some grandparents, the emotional impact of caring for grandchildren may be quite negative. Some are reeling from the diagnoses and struggling to accept that their grandchildren have disabilities and may need additional care for the rest of their lives. Their visions of how they had planned to grandparent are being replaced with visions of how they actually need to grandparent. Some are worried about the impact high care needs are having on their adult children’s wellbeing, particularly their marriages and careers. Some are reeling because they have suddenly and unexpectedly taken custody of their grandchildren and are now raising them, providing care around-the clock. Some are dismayed by the way their adult children are behaving, failing to raise their own children, whether due to addictions, mental health issues, financial misfortunes, or rejection of disabilities. Finally, some are shocked by the lack of appreciation; they are appalled that their adult children are taking them for granted and do not appreciate all of the care work they are providing. It’s Just So Hard Sometimes. . .When You Have a Terminally Ill Grandson For some grandparents, the negative emotional impact is linked to the seriousness of the diagnoses. When a grandson is gravely ill, it takes an emotional toll. Doris, age 55, cares for John, age 11, who has atrophy of the brain, Lennox-Gastaut seizures, and visual impairment. Doris routinely cares for him and assists with his feeding tube, ventilator, tracheotomy, and catheter. Doctors have predicted John’s death for

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years and though he continues to outlive their estimates, the emotional toll on Doris is devastating. It’s just so hard sometimes. . .when you have a terminally ill grandson, or grandchild that’s going to pass before you do. It’s just not supposed to be that way. And, there is some days you just wish you could go before they do. You don’t want to feel that hurt. You don’t want to feel that pain. Because you know how bad it’s going to hurt. And, it sucks really bad. But, what are you going to do?

Doris sees a therapist but it often does not relieve her distress. She wishes she knew other grandparents with terminally ill grandchildren but she does not. Go to therapy. I’m in therapy. It does help sometimes. Sometimes it does. Sometimes, I come out of there feeling worse. I think that’s all part of it. And, I’m the type of person that normally, would hold all of that in, and not describe it—which isn’t good to do either. But, I’m learning to get those out, and, I like how that makes you feel. You just feel very comfortable. But, it hurts your heart, physically. You hear people you’re your heart’s broken. Yeah. Yeah. You can physically feel your heartbreak and it sucks really bad.

She participates in some on-line groups, and has many friends who are grandparents, but she gets irritated when they fuss over minor issues while she is struggling daily with such grave challenges. I have many friends who have grandchildren. . .You get so angry sometimes when they say to you, “Oh poor little, Donald, scratched his knee up.” He’s got this little cut on his knee, and they go on and on and on about it. And, you so badly want to say, “You know what? Are you kidding me? Are you really kidding me? You’re going on and on and on about a scratched-up knee? Put a freakin’ band-aid on it!” That sounds horrible. It sounds very mean, but you can’t help it.

I’m Emotionally Drained Being unable to control the situation makes caring for grandchildren more emotionally draining for some grandparents. Frank, age 73, cares for AJ, age 11, who has autism. Frank lamented the emotional toll that AJ’s diagnosis has on him and his marriage. Of all the people on our side of the family, the person that handles this situation the worst is me. I’m not a science kind of guy and I’m emotionally drained by it so at times it affects how I deal with my wife. . .Where it creates the most stress for me is that I’m your typical type-A personality. . . retired officer, a business owner. In every one of those situations I was in control. But there is nothing in this situation that I can do to alleviate or help it and it drives me nuts.

It Kind of Makes Me Sad, But I Know He Was Given to My Daughter for a Special Reason Sometimes the sadness is due to missed opportunities. Grandparents who had a certain vision of how they would spend time with their grandchildren may be out of sorts when their expectations are out of step with reality. Connie had hoped to take her grandson on walks and push him in the swing, and thus far that has not been possible. Connie says grandparenting is a completely different experience for her than others she knows because her grandson has disabilities.

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I don’t know anybody that has a special, a disabled grandchild. I can’t think of one person. Not one really. I think our experiences are totally different than theirs. I mean, they can run with their grandchildren, and they have grandchildren that can run to them and hug them and go, “I love you!” And, you know, you hear them talking, and they’re reading with you, and all that stuff. I don’t have those experiences. I hope one day I do, but at this point, it’s not happening. And, it kind of makes me sad, but I know he was given to my daughter for a special reason, and that, you know, he was going to be taken care of by her.

Grandparenting is not unfolding the way she had hoped it would and Connie pines for the opportunities she sees other grandparents enjoying. It’s not clear that Andy will ever be able to walk or swim, but she remains focused on such activities. So, I’m not complaining about any of it, not a bit, not really. That’s the difference. You see grandparents out all the time. They’re out here walking their grandchildren out here in the apartment or swinging them on the swings. They’re at the pool with them. You know, we’ve gone to the pool with Andy, and he can’t swim. He just kind of sits there in your arms. And, then those kids are laughing and playing in the pool and blah blah blah. And, I look forward to the day that that happens with Andy. I can’t wait for it, because it’s going to be awesome. Not that it’s bad now, but it will be even better.

“Why Aren’t These Grandkids Normal?” For grandparents with multiple grandchildren with disabilities, they experience some emotional turmoil. Barbara is, 67 year-old, mother of three, and grandmother of five grandchildren who have different types and degrees of various disabilities. Barbara experience moments of distress and does not feel fulfilled as a grandmother. A lot of it was more, “Why aren’t these grandkids normal?” I can’t say that I’m fulfilled. I wish that it wasn’t that way with all these kids with disabilities.

One of Barbara’s grandsons who is 14 with autism, has displayed some mental health problems and that has created some real concerns and worry for Barbara. Yeah. You worry about them. One of my grandsons scares me. They have a real problem with him. I think he has suicidal thoughts. He decided a couple years ago and he wanted to cut himself. You constantly worry.

Emotionally, It’s Been Very Hard on Me. I Have Such a Hard Time Accepting That She Has Autism Cindy is one of many grandparents who struggles to accept that her grandchild has a disability and that it reshapes both her son’s role as a father and her own role as a grandmother. Cindy, age 69, cares for her granddaughter Sara. She says the emotional toll has been high in part because her granddaughter has autism, and in part because her son and daughter-in-law have been so reluctant to accept the diagnosis and obtain the prescribed therapies. Emotionally, it’s been very hard on me. I have such a hard time accepting that she has autism, this is very painful. I have come a long way with acceptance and then I regress. My daughter-in-law did not know she was pregnant. I’m nice to my daughter-in-law because I want to see Sara. But she did not know she was pregnant and all then suddenly a baby appeared. She thought she was sick and she was in labor. And this shows how much in denial she can be. Sara was not progressing and my daughter-in-law was in denial. Sara is not

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physically disabled, she is docile, no outbursts, no tantrums really. Once I realized she was autistic and her parents were not responding, I became frantic trying to get her help.

The sources of Cindy’s sadness are multiple and shifting. At times she feels sad for her son that he will likely not ever be a grandparent. At times she feels sad for herself that her own grandchild does not seem to know her. But she quickly returns to her main priority, which is helping Sara develop. One of my big sadness is that my son has just one child who is autistic. They can’t have another child because she is diabetic. So he is probably never going to be a grandparent. That makes me very sad. And I’m very sad that she does not seem to recognize me. She does not seem to know who I am. But then I think who cares? This girl has autism, what difference does it matter that she does not know who I am. Or what difference does it matter that she does not liked to be hugged and I’m such a physical person. My sadness does not matter. What matters is she has autism and we need to give her as much help as we can. This is her life and I need to help her.

When Cindy imaged having grandchildren she imagined it would be like the television show Blue Bloods. But now she hopes Blue Bloods will be cancelled because it makes her and others feel so inadequate. She was so sure she would be hosting big family dinners every Sunday that she created a playroom for the grandchildren in the basement. But Sara’s mother said she did not want Sara playing in the basement, though she does at her own house. Her other son said that the grandparents were welcome to visit his two children at his house every Sunday morning but that would be their only visit each week. She thinks that her son’s families are all more tightly mingled with the maternal grandparents and she and her husband are left out. Finally, it made me so sad, I disassembled the playroom in the basement. It is too sad, too heartbreaking, to keep looking at it. They will never use it. . .I planned Sunday dinner and nobody came.

I Feel Cheated Out of What I Would Like to Be Doing Elsie is also focused on what she cannot do, rather than what she can do, with her granddaughter. She wants to be a regular grandma and now she has a custodial grandchild with disabilities. She never expected to be raising her grandson. Elsie, age 62, is unemployed due to disabilities, and struggles to support them both on just $23,000 a year. Curt, now age 11, has ADHD and learning disabilities. It’s not the kind of thing where you wake up one day and say, “I hope I get to raise my grandchild.” I feel cheated out of what I would like to be doing. This was not at all the plan. It’s not like I pictured myself traveling the world, but what I really feel cheated out of is being able to be a regular grandma. I would like to be a grandma. It would just be a role reversal.

Elsie has struggled to pick up the pieces and provide around-the-clock care for Curt, when what she wants to do is pop in and have some fun with him. She wants to be his grandma not his mom. If I was just the grandma, I could swoop in and do fun things and buy him fun things. I could visit and then leave, and let them deal with the aftermath. Instead of me having to deal with the aftermath. It would be the opposite of what it is now I could be the fun person, and not have to worry about, oh gosh, how will I pay for this, that, or the other thing. I had to go talk

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to the principal at school today because the incident at school yesterday. There is always something to worry about.

That Is the Most Exasperating Thing Not Knowing What’s Wrong with Him Because He Is Non-verbal Similarly, for Dorothy, one symptom of Johnny’s disability is that he cannot tell her what is wrong. She feels great emotional distress when she knows she needs to do something to help but cannot ascertain what that something is. Dorothy, age 59, cares for Johnny, age two, who has autism. The meal times are very challenging. He is very particular. He does like a routine. Even if I was to babysit him, I had to follow my daughter’s routine. I had to be careful of what I was feeding him. If it wasn’t the right stuff he would flip. That’s why you couldn’t trust anybody else to babysit him. He has changed a lot but his routine has gotten worse. He is more rigid now as he gets older. . .

Dorothy describes an outing that went well but then ended in tears. She was exasperated that she was unable to determine what was wrong or how to fix it. He has sensory issues so he loves anything that creates winds. I took him to a park and he loves the rides. But at the end he started crying. I was there with him by myself and that’s a two hour drive. He was crying and I didn’t know what was wrong with him. That is the most exasperating thing not knowing what’s wrong with him because he is non-verbal. When he is frustrated he cries.

It’s Hard to Understand Children Whose Disabilities Involve Communication Violette also suffers great emotional distress when her grandchildren are not able to express the causes of their discomfort. She has five custodial grandchildren, ages two to 13, who have disabilities. Often they are not able to tell her what they want or need, and they and Violette grow very frustrated. Sometimes it’s because I can’t understand what they’re trying to tell me. It’s hard to understand children whose disabilities involve communication.

The Hardest Thing for Me Is to Watch the Strains That It Puts on My Daughter and Her Marriage and My Son-in-Law Knowing how difficult it can be for their adult children to provide sufficient care for disabled children can make grandparenting children with disabilities more emotionally taxing as well. Many grandparents mentioned their concerns about the impact disabilities were having on their adult children, particularly their marriages and careers. Rose cares for Mia, age eight, who has cerebral palsy and is quadriplegic. Rose feels stressed just watching how challenging it is for her daughter and son-inlaw to manage their marriage and family life. The hardest thing for me is to watch the strains that it puts on my daughter and her marriage and my son-in-law. She’ll never have a normal marriage. That’s terrible to watch. My daughter can’t get away, they’ve gotten away for a couple weekends, but in the first four years, no, they didn’t go anywhere. We were just trying to function.

I Consider Myself a Big Ball of Stress For some grandparents it is the circumstances surrounding the disabilities, not the disabilities, that generate negative emotional impacts. Many have taken custody of

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their grandchildren when their adult children grappled with addictions, mental health issues, and financial setbacks. For Lizzy, what upsets her most is that her daughter stole from her, neglected her child, and forced Lizzy to become his custodian even though she has serious health and financial problems. Lizzy, age 55, cares for Mark, who is 12 and has ADHD. Mark has lived in her custody since he was two months because he mother was addicted to drugs and his father died of a heroin overdose. Lizzy has pulmonary vascular disease and is currently unemployed and uninsured. Because of a recent lay-off, what little savings she had is now depleted and she has accumulated new debt. All these worries adversely impact her emotional health. I consider myself a big ball of stress, but I think it makes me feel younger to take care of Mark. People don’t even realize I’m his grandma, they think I’m his mom, that I’m not old enough to be his grandma, and that makes me feel really good. Having a grandchild expands your friends. I have a lot of great friends with kids, or grandchildren, and it gives me a very big variety of friends. My health problems, cardio pulmonary disease, are not due to my grandson. My financial problems are related to my daughter, her rehab, her stealing from me and stealing from my checking accounts. And then losing my job, not having a job for these two months. That all has affected me a lot, that was very expensive and I’m trying to pay off all that debt. My new job is permanent but they lay off all the time, so I will work there as long as I can. We shall see.

Lizzy says her daughter’s addiction has caused Lizzy to have PTSD. Certain things trigger upset and she tries to avoid them. Her daughter had already stolen from her. Then when a neighbor stole some of Mark’s medication it sent her reeling. Caring for Mark compounds her worries and yet she is comforted knowing she is providing him vital support. We had a neighbor stealing Mark’s medication and it was just ridiculous, I can’t go through it again. I have never turned my back on my daughter and I love her, but I don’t want to live with her ever again. I don’t have any freedom. I would not be so worried about not having a job, if I did not have Mark. But he has a good life, he is good.

I Have Felt Very Anxious Similarly, for Candi, the circumstances have created a great deal of anxiety and emotional distress. Candi, age 61, cares for her custodial granddaughter Aly, age 12, who has ADHD and asthma. Being legal guardian for her granddaughter has proven particularly stressful since her second husband died, and the stress is adversely affecting her emotional health. Yes, I do feel stress and anxiety. A lot. All the time. And that affects my health. I have felt very anxious, it has caused stress. Since my husband died, being a single parent again, not having the resources, the help. It is hard. Constant anxiety. Not having a break, no one to turn to. But you know we get over it, like any other parent. You deal with what you have. Much harder for me since he died. I do not have enough money and do not have anyone to help.

It’s one thing to be a custodial grandparent at age 61, it is quite another to be a single custodial grandparent at that age. She has no one to help her care for Aly, no one to tackle the chores she is not good at, and no one to provide respite. We would tag team each other, if I needed to go out he could be home and help her and check her homework. We could share the jobs. He was good at the math and I could sew. We would share the jobs, doing the things we were each good at. We had so much trouble with

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the school and the teachers, we tried talking to the counselors and the principal. Then we had so much trouble with the homework and the grades. But now it is just me. So now, she is going through puberty and struggling more, and I’m getting older. We are giving her mother a chance.

Candi has numerous health problems, very little money, and little time for a social life. She is depleted in almost every way imaginable. Her sister, who is her best friend and is facing a fatal disease, feels she has done entirely too much for Aly. But Candi disagrees. My sister would say I did too much, that I should have never taken my granddaughter, that we should have found someone younger. But my other brothers and sisters all say I did the right thing and that I have done a wonderful job. I have always had health problems. I did what I wanted to do and I would not have had it any other way.

When You Are Asked to Take a Child Because of Circumstances, You Don’t Have a Choice If grandparents who are unexpectedly asked to become parents feel substantial emotional impacts, imagine being asked to become a parent again when you are a great grandparent. Unexpectedly, Joy, age 60, began parenting when the state removed her great grandson from his parents. At one year, Zak stopped breathing and now has cerebral palsy and cortical vision impairment (CVI). The courts faulted his parents and placed Zak in custody of Joy for ten months. My three kids were already adults, and I had already helped with my grandchildren, and they needed to bond with their parents and I was just there to support them. So when you are asked to take a child because of circumstances, you don’t have a choice. You do, you can say no, but I question those who say no. I based it on my health and my military career, you just don’t say no. You say yes, of course, let’s go and we will figure it out. I and my family and friends, we are all Christian, military, mission oriented. You don’t say no.

When we interviewed Joy, Zak had just been placed in foster home due to failure to thrive under Joy’s care. She reflects on her sense of obligation and the support she received from family and friends. During the ten months I was his sole parent. . . Who wants to be a full-time parent at 60? It’s not something you want to do, but you will do it, and you just do. I have a very supportive base with the ladies from the church and my friends and family, and they were all supportive.

When She Gets Shitty, She Likes to Take the Grandchildren Away In a very few instances, the negative emotional impact is caused by retaliation. Sometimes adult children use grandchildren as pawns, forcing grandparents to do as they wish or face not seeing their grandchildren at all. Stella, age 66, cares for her 14 year-old grandson, Chase, who has social anxiety, and her eight year-old granddaughter Karla, who has audio processing disorder, ADHD, anxiety, and sensory processing disorder. She is a lesbian and used artificial insemination to conceive her son, whom she says struggles with ADHD and drug issues. She says she does basic grandparenting, meaning she does not care for her grandchildren on any set schedule. Rather, she is called upon for last second assistance quite frequently. She occasionally picks her granddaughter up from dance, or takes both kids for an overnight. When she has them she will help with homework,

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take them for ice cream and feed them, but she does not do laundry. She has had to fight to have any time with them at all. For reasons she does not explain, she was not permitted to see Karla from when she was eight months old until she was five and one-half years old. She only regained the right to see Karla by going to court and demanding grandparent rights. Though she sees Karla regularly now, it is not as often as she might like. In part, Karla is growing older and wants to spend more time with the girls from her dance troupe. I part Karla’s mom withholds visitation if she is angry with Stella. Currently she is upset with Stella for taking her son into her home as he recovers from addiction; his wife feels he can recover at home and in fact blames Stella in part for his addiction. As a result of the dispute, Stella has had less time with Karla. I also battle with a daughter-in-law who uses them as punishments. When she gets shitty, she likes to take the grandchildren away. Like right now.

When she is permitted to see Karla, she is often subjected to last moment requests and guilted if she balks at changing her plans. Though retired, Stella sings with a choir and has other commitments that she is not eager to miss. The guilt trip is thrown on me because “It’s your granddaughter, dadada.” But I have a life too. Had to cancel meetings or leave early because they don’t think it’s that important that I sing with hospice harmony singers. Just because it’s not my career, they think it’s not that important, and it is, to me! But, in their eyes, I should drop everything, hit the pavement. I have had to cancel plans with friends, given up a lot of. . .

At this point in the interview, her phone buzzes. She does not answer it but says that her son wants her to come pick him up. That’s just it, he thinks his plans are more important than mine.

Though she does not say whether she will indeed pick him up, she wraps up the interview quickly in a distracted manner. I Did Not Think Our Marriage Was Going to Make It The circumstances at times seem insurmountable. Taking custody of two grandchildren with disabilities when your husband is working many hours away to support everyone has generated substantial emotional distress for Kim and her husband. They have worked hard to try to save their marriage. Kim, age 59, cares for her two custodial grandchildren, Izzy, age 17, and Matt, age ten, both of whom have ADHD. Taking custody of the grandchildren has been hard on their marriage for several reasons. The grandchildren have multiple needs, they were abandoned by their parents, they are a blended family, and her husband is commuting each week to a different state for work, leaving her solely responsible for the grandchildren from Sunday through Thursday. It’s been challenging, especially since Izzy came. We have had her for five years, and Matt for nearly ten years. She was so emotionally wounded and angry, and then we had teen hormones. And I was the primary person doing it all because my husband was gone all week for work. And he was protective of her when he was here and I was more like, she has to get in the groove dude. I’m doing this every day. There is no reason for her to be disrespectful or to not do the things she is supposed to do. We had a lot of conflict between about that. He was away for work and I was here managing everything.

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Kim found it difficult to care for the grandchildren on her own all week, but then even more difficult on the weekends when her husband was home because he did not pitch in and he tended to side with his granddaughter rather than his wife during disputes. Ultimately, they went to counseling and that helped. She wishes they had gotten help earlier and encourages others to do so. We had a blended family, and these are his daughter’s children. And then all the psychological issues of her being abandoned by her mom, and then what was undiagnosed ADHD, and then her teen hormones. It was stressful. When he come home on weekends, I thought he should pick up the load and help, but he would side with Izzy rather than back me with Izzy. So finally we got professional help and we tell others to seek counseling and information and others professionals right away. Don’t wait. We waited so long and now we are starting to get information and it helps.

She says the stress and conflict was so consuming that their marriage nearly ended. She was determined to find more and better tools to manage the situation. You are raising kids that have issues from trauma. And they have learning issues. It is all a magnifier and an accelerant. This is not the same as raising your first batch of kids. What worked then doesn’t necessarily work now. I did not think our marriage was going to make it. I’d be thinking I wouldn’t make it one more day. I had my suitcase packed. I was ready to quit. We had to get help, and better diagnoses, and a good psychologist, and get more tools and take care of our marriage again. We need to go out for a walk or for coffee and not talk about the kids. Some of the basics from when you first get married.

I Wish They Lived Closer, and If They Did, I’d Spend More Time with Them Sometimes the emotional distress is linked to negotiations about how much care grandparents are providing. Both Martin and his daughter wish they lived closer together, so that he could provide more care, but neither is willing to move. Martin is in his third marriage and has 28 grandchildren spread across the US. Three of his grandchildren have Asperger’s, one has bi-polar disorder, and Lara has Down syndrome. Each summer Martin and his wife spend two weeks caring for Lara. His daughter has mentioned that she wishes he lived closer and could care for Lara more often. Martin has no intention of giving up his full life and moving to care for Lara, but he does wish he could spend more time with her. If I had to live with her day to day, we would have to jostle schedules. My daughter has said she wished we lived closer. We said, “Well, if we did, we would be able to take Lara more often.” So, things might be different, but we had two weeks and that’s the time we had dedicated for her.

At age 64, he says he gets tired. As with all of his grandchildren, he loves to see them come and he loves to see them go. By the end of the day he wants to rest. Still, the yearning to spend more time with Lara has him pondering whether Lara and her family might move closer to him, rather than vice versa. It’s never enough time to spend with your family. I wish they lived closer, and if they did, I’d spend more time with them. But, I don’t have any regrets. My wife and I live a full life. We travel. And, if she lived here, I’d see them when I could see them. But, I don’t have any regret. I don’t intend to move up there just to be around them. She is going to live her life, and I’m going to live mine. If they lived here, we would just integrate them into whatever life-style that we’re doing. We have a saying in the family, that we go as fast as the slowest

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hiker. We’re not going to go any faster because we’re not going to leave anybody behind. We’d just integrate them into our lives if they lived here full-time.

Feeling Unappreciated For several that we interviewed, the greatest source of emotional distress is that their adult children are taking them for granted and do not appreciate the care they are providing for their grandchildren with disabilities. They raised these children and have often worked hard to help them cope with addictions, mental illness, and other serious challenges. Now they are caring for their grandchildren and while they know it is important care work, they wish their adult children understood that as well. Some adult children do not appear to have the capacity, and others do not appear to have the personality, to be either grateful for grandparent support or concerned about grandparent wellbeing. But I’m Never Quite Sure If We Are Doing Ok Sometimes adult children say thank you but then they are critical of the care being provided. For example, Chris’ daughter and son-in-law question her when she allows the children to watch TV or when the children are dirty because she let them play in the yard. Moreover, her daughter does not seem to understand how much her and her husband’s health, and financial resources, have declined. The effect, for Chris at least, is that she is never sure if she is doing the right thing. The uncertainty generates a great deal of emotional distress. Chris, age 67, cares for Wendy, age ten, who has anxiety disorder and has autism like symptoms, and Mark, age seven, who has ADHD and Oppositional Defiant Disorder. She retired early, moved with her husband across the country, and now watches the grandchildren after school, some evenings and weekends, and all day in the summer. She knows they are grateful for her help, but she worries that they are not happy with the care she and her husband are providing. These worries invade her sleep and create a lot of distress for Chris. I think this is a huge relief for my daughter and son-in-law, having us here, helping. But I’m never quite sure if we are doing ok. I can’t sleep very well. I have nightmares about me doing something wrong. It can be from back at work, or anything, somehow I mess it up. I haven’t told my daughter. My husband knows I feel inadequate. He tells me I shouldn’t feel this way. I feel a huge obligation because my daughter and son-in-law bought this house and we live here, so we feel so beholding.

Eventually, Chris told her daughter that she was worried about the cost of the house, in comparison to the amount of childcare they were providing, and her daughter tried to assure her how much she valued the grandchild care. I told her I was not sure she was getting enough out of the deal. So she sent an itemized list of all that we do, and the value of each, to show us that she was coming out ahead, to show us that all we do is worth more than the value of the house. They do not pay us. We do an occasional evening, here or there. Or if the kids are sick or on snow days, we can help with that now and then, if they can’t do it.

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Chris does feel appreciated, but she is somewhat baffled by her daughter’s inability to see how much she and her husband have aged, how poor their health has become, and how few financial resources they now have. Chris’ abscessed tooth has been sore for so long because she lacks sufficient money to see a dentist. I do think they appreciate what we are doing, they appreciate our help. But my daughter does not understand that we have gotten older. She sees it in others, she is empathetic about older people, but she has trouble seeing that we are those older people. I sometimes remind her that we are older but she shrugs it off. I’m just mom. It’s hard to understand. We have aged. I had two heart attacks right before we retired and moved here. Hard for her to comprehend. She expresses concern if I’m sick. The abscessed tooth was really painful and she would text, “How are you feeling today.” When she asks us to take the kids, she always says, “We could use help if that works out for you.” But it’s hard for me to say no, however, because we are here, and I know it’s so much easier for them if we take the kids.

My Daughter Takes Advantage of Me Sometimes adult children do not appear to have sufficient emotional capacity to provide care to their own children or to understand, or appreciate, just how much care the grandparents are providing in their stead. Candi says that though her daughter does occasionally say thank you, mostly Candi feels she takes advantage. Candi had to file bankruptcy after her second husband died, and last year’s household income was just $12,000. She has little to spare, yet she continues to cover Aly’s expenses. My daughter takes advantage of me. I’m always there for her. I have raised my granddaughter since birth and yet my daughter does not listen to me about how to care for her. She shuts me out. She expects me to pay for everything, and do everything. I always have, but I don’t have the resources anymore. I don’t have the money anymore and I’m getting older. I’m paying for my granddaughter’s expenses, still, even though she is at her mom’s these last four months. I send money for rent and food and give whatever extra I can. A hundred here and a hundred there. I try to do what I can.

Candi’s daughter never did drugs growing up, but then dated a man who wanted her to lose weight and she became addicted and then pregnant. Now in recovery, Candi feels that she is not really able to grasp the value of the 12 years of custodial care that Candi has provided thus far. The drugs took a lot away from my daughter. She loves me and is grateful that I was there for my granddaughter. But my daughter is totally different than the child I brought up and I don’t think she will ever be able to really appreciate what I have done for her. She says. “Thanks mom,” but does she really realize? I could not imagine finally having a grandbaby and then not doing everything I could for her.

She Just Assumes I’m Going to Have Him Full-Time Similarly, because of a brain injury, Irene’s daughter does not appear to be able to care for her son or appreciate how much care Irene is providing. Irene, age 73, cares for her coresidential daughter and her four year-old son Liam, who has ADHD and autism. Her daughter does not appreciate what she does for Liam. She expects Irene to care for him around-the-clock and pay for everything. Despite Irene’s failing health, she does not offer to help, nor express concern that Irene is doing too much. Because it’s never enough for her. She just assumes I’m going to have him full-time. I also do have him all the time.

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Though they have a large extended family, and everyone thinks she is too old to be caring for Liam this much, no one offers to help. They know how he behaves and they don’t want to deal with it.

Irene’s husband used to help her with Liam and also give her some respite. Since his death she is on duty day and night and has not seen friends nor had the time or energy to care for herself. She wishes someone would help her with Liam, and yet when someone has stepped up she has often worried that they would not do a good job. She does not trust his mother to be alone with Liam because of her brain injury. She finds it hard to trust others because they do not keep him close enough to keep him safe. When I’m not with him, I cry because I don’t trust other people with him. I don’t really trust his mom with him. I just can’t trust people. . .Like I always hold on to him, and they let him roam more. And, I have the fear of him getting hurt or run over or something. . . So, I can’t stand it, being away from him. I had to be away from him after I had surgery, but I cried every day because I wasn’t with Liam. Even though I know someone can take care of him.

They Have an Entitlement Philosophy Other times, it appears that adult children have more than enough capacity to care for their own children but they chose not to. For example, Cindy says her daughter-inlaw does not seem to appreciate what she, or her own mother, do to help. Cindy, age 69, cares for her granddaughter Sara who has autism. I think they appreciate to the extent that they can. They have an entitlement philosophy. They take it for granted that I will do this because I’m a grandma. I drove up yesterday and drove 40 minutes, and when I got there, no one was home. I texted and she said, she had other plans, and had forgotten to tell me. She did not need me and had not told me. So I drive back home. That is not showing a lot of respect that I’m helping. I sew, I made Sara 25 dresses, and I made curtains for them. And they will say thank you, but they do not really appreciate at a deep level. They don’t wish I was doing more.

Cindy does not feel that her efforts are appreciated, nor does she feel that her daughter-in-law appreciates her own mother’s or husband’s contributions. She treats her own mother horribly and my son has mentioned she treats him horribly, too. With her own mother, she will complain, what did you feed her, when did you change her. The other grandma tells me she treats her badly. She does not treat me as badly. She is not a nice person and she does not appreciate what her mother does. Her mother has moved in, cares for Sara all the time, and she does not appreciate that.

She Has a Hard Time Seeing Beyond the Poor Me, You Took My Child Away from Me When gaining custody is a battle, both sides are often left feeling bitter. Elsie’s daughter, free of drugs at the moment, has not forgiven Elsie for taking custody of her son. Still angry, she does not appreciate how much care Elise is providing. Elsie, age 62, cares for Curt, now age 11, who has ADHD and learning disabilities. Her daughter sees Curt only during supervised visits and does not contribute in any way to his care. She does not express gratitude for Elsie’s efforts, nor concern for Elsie’s tenuous financial situation or declining health.

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I think she appreciates as much as she can, she is extremely self-centered. She has a hard time seeing beyond the poor me, you took my child away from me. But I think she appreciates it. She never worries about me, she would have to think beyond herself to worry about that. She never worries if this is too much for me, or if I have enough. She worries about herself.

My Daughter Is Preoccupied and She Forgets That People Are Helping Her Out Similarly, Tessa’s daughter is too self-absorbed to express much gratitude. Tessa, age 61, cares for Leila, age six, who has Down syndrome. They share a house, with Tessa living upstairs and Leila and her mother paying rent to live downstairs. Tessa cares for Leila almost every day after school and sometimes on evenings and weekends. Does her daughter appreciate all that she does? Sometimes yes, and sometimes no. It depends. Sometimes she will say thanks and that she appreciates everything I’m doing. Other times she is so absorbed in taking care of Leila and herself and working. She is doing paperwork to foster another child, and she is busy getting a room ready. She wants Leila to have a sibling, to not have the only child syndrome. So my daughter is preoccupied and she forgets that people are helping her out.

She Has Got to Where She Just Expects It When adult children take grandparent care for granted, it increases emotional distress. Though her son is appreciative, her daughter-in-law is less so, and when Marina asked for Fridays off she unleashed verbally. Marina, age 60, cares for Carly, age two, who has Williams syndrome. Initially Marina was caring for three grandchildren and found that it was just too much. She decided to focus on Carly and her sister, because Carly has a disability and no other grandparent to help. But it upset her son and his wife that they had to turn to her mother for care. Carly’s father expresses his appreciation to Marina, but she says his wife has come to take her for granted. My oldest son is very appreciative of how much I care for Carly. My daughter-in-law appreciates but she has got to where she just expects it. When I said I needed Fridays off it was a shock to her. It did not go over very well. She was verbally not very happy with me.

She Never Says Thank You Lack of appreciation, coupled with theft, by her adult daughter has left Violette emotionally and physically drained. Violette’s five coresidential grandchildren have all been diagnosed with disabilities linked to their mother’s opioid abuse. Violette’s daughter exploits her kindness and she is always trying to take even more from Violette. She never says thank you. When I was in the hospital with pneumonia, she said, “When are you getting out of the hospital.” And I was like, “Hello? I’m sick.” My boyfriend took care of all five. I was in for a week.

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Emotional Ups and Downs Caring for grandchildren with disabilities can be an emotional roller coaster. For some grandparents, care work generates some of the highest highs. They love time with their grandchildren and they love that they are reducing stress for their adult children. They know how important their care work is and they know it is appreciated. For others, it generates some of the lowest lows. They know how important their care work is and they really wish it was appreciated. They are providing far more care than they ever meant to and far more than is appropriate given their depleted physical and financial wellbeing. They wish they could just enjoy time with their grandchildren. They would like to wear grandparent rather than parent hats. They are overwhelmed, and often saddened, by the demands placed on them, the hostilities within the family, and the disregard for how they are faring as they approach their own old ages.

Notes 1. Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Kim et al. (2017), Baugh et al. (2016), Lee et al. (2016), Mansson (2016), Margolis and Wright (2016), Tang et al. (2016), Whitley et al. (2016), Findler (2000, 2014, 2016), Crowther et al. (2015), Doley et al. (2015), Dukhovnov and Zagheni (2015), Mahne and Huxhold (2015), Sprang et al. (2015), Wiemers and Bianchi (2015), Bundy-Fazioli et al. (2013), Castillo et al. (2013), Musil et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), Conway et al. (2011), Gallagher et al. (2010), Toremann (2010), Woodbridge et al. (2009), Neely-Barnes and Dia (2008), Gerard et al. (2006), Szinovacz and Davey (2006), Mills et al. (2005), Goodman and Silverstein (2002), Kolomer et al. (2002), Burnette (2000), Force et al. (2000), Janicki et al. (2000), Reid and Hardy (1999) and Schilmoeller and Baranowski (1998). 2. Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Kim et al. (2017), Baugh et al. (2016), Lee et al. (2016), Tang et al. (2016), Whitley et al. (2016), Doley et al. (2015), Chen et al. (2015), Harrington Meyer (2014), Bundy-Fazioli et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), Conway et al. (2011), Toremann (2010), Dolbin-MacNab (2006) and Pruchno and McKenney (2002). 3. Musil et al. (2013) and D’Astous et al. (2013). 4. Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Kim et al. (2017), Baugh et al. (2016), Lee et al. (2016), Tang et al. (2016), Whitley et al. (2016), Doley et al. (2015), Bundy-Fazioli et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), Conway et al. (2011) and Toremann (2010). 5. Findler (2014) and Woodbridge et al. (2009). 6. Burnette (2000). 7. Findler (2000). 8. Musil et al. (2013). 9. Chen et al. (2011) and Harrington Meyer (2014). 10. Margolis and Wright (2016), Dukhovnov and Zagheni (2015), Wiemers and Bianchi (2015) and Harrington Meyer (2014). 11. Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Kim et al. (2017), Baugh et al. (2016), Lee et al. (2016), Margolis and Wright (2016), Tang et al. (2016), Whitley et al. (2016), Noy and Findler (2016), Crowther et al. (2015), Doley et al.

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13. 14.

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(2015), Dukhovnov and Zagheni (2015), Mahne and Huxhold (2015), Wiemers and Bianchi (2015), Chen et al. (2015), Harrington Meyer (2014), Bundy-Fazioli et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), Conway et al. (2011), Toremann (2010), Baker and Silverstein (2008a, b) and Baker et al. (2008). Margolis and Wright (2016), Dukhovnov and Zagheni (2015), Wiemers and Bianchi (2015), Luo et al. (2012), Igel and Szydlik (2011), Baker and Silverstein (2008a, b), Baker et al. (2008), Hughes et al. (2007), Blustein et al. (2004) and Goodman and Silverstein (2002). Noy and Findler (2016) and Force et al. (2000). Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Kim et al. (2017), Baugh et al. (2016), Lee et al. (2016), Tang et al. (2016), Whitley et al. (2016), Noy and Findler (2016), Doley et al. (2015), Chen et al. (2011), Bundy-Fazioli et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), Luo et al. (2012), Conway et al. (2011), Igel and Szydik (2011), Toremann (2010), Baker and Silverstein (2008a, b), Baker et al. (2008), Hughes et al. (2007), Hayslip and Kaminski (2005), Blustein et al. (2004), Goodman and Silverstein (2002). Barnett and Connidis (2019), Liu and Cong (2019), Amano et al. (2018), Lent and Otto (2018), Kim et al. (2017), Noy and Findler (2016), Baugh et al. (2016), Lee et al. (2016), Tang et al. (2016), Whitley et al. (2016), Doley et al. (2015), Bundy-Fazioli et al. (2013), Yancura (2013), Bates and Taylor (2012), Langosch (2012), Luo et al. (2012), Conway et al. (2011), Igel and Szydlik (2011), Toremann (2010), Baker and Silverstein (2008a, b), Baker et al. (2008), Hughes et al. (2007), Hayslip and Kaminski (2005), Blustein et al. (2004) and Goodman and Silverstein (2002).

Chapter 15

Physical Wellbeing

Caring for grandchildren with disabilities can have an enormous impact on physical health and wellbeing. Providing intensive care as parents, in your 30s and 40s is one thing. Providing intensive care as grandparents in your 60s and 70s is quite another. A few grandparents said that providing care has little to no impact on their physical health. But many said it has notable impacts. Some emphasized positive impacts. Care work pulls many off the couch and away from the TV. Though some have always prioritized physical activity and wellness, others find they are much more physically active, and at times more careful about their diets, when providing care. They are often tired at the end of the day, but in better health because of the bursts of activity. Conversely, many told us the physical effects are fairly adverse. Some are already struggling with health issues and that makes providing care more challenging. Others find that it is the care work itself that undermines their health. Chasing, bending, and lifting can take a toll on aging bodies. Often the care work is so timeconsuming that they are not able to make appointments for their own medical needs. For many it is a mix of positive and negative impacts in part because better exercise and diets are often offset by insufficient rest, relaxation, days off, doctor visits, and dental care.

Impact of Care Work on Grandparent Physical Health There is a plethora of research on the health impacts of caring for grandchildren in general but less on the health impacts of caring for grandchildren with disabilities. Some studies show that grandparenting has positive effects on physical health of the grandparents while other studies show negative impacts.1 Research suggests the impact on physical health varies by social factors such as gender, race and ethnicity, living arrangements and socioeconomic status.2 Generally, studies show grandparenting may have positive effects on grandparent health when it is limited, and when grandparents are younger and in better health.3 Because care work shapes © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_15

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grandparents’ ability to eat healthily, exercise, see their doctors, and manage their acute and chronic conditions, less is often best. One study, using the Health and Retirement Study, conducted growth curve analysis to examine the effect of living arrangements and the intensity of caregiving. They found that some degree of grandparenting, mostly moderate caregiving hours, is beneficial to grandparents’ physical health, particularly their fragility.4 Grandparents who make a point of engaging in physical activities with their grandchildren may find that increased exercise leads to increased flexibility, balance, and endurance. Moore and Rosenthal (2016:29) suggest that grandparenthood is an “antidote for ageing” primarily because they found many grandparents highly motivated to stay as active and fit as possible so that they can continue to care for grandchildren as long as possible. Other studies tend to show more mixed results. One study found that while some grandchild care had generally positive health impacts, more intensive coresidential grandchild care, particularly for African Americans, was linked to more adverse health outcomes.5 Similarly, a study examined a sample of 12,872 grandparents aged 50 through 80 from the Health and Retirement Study, did not find adverse health effects for most grandparents. However, for coresidential and custodial grandparents performing longer hours of care work, they found deleterious health effects. Custodial grandparents tend to have more financial, social, emotional and physical problems that can complicate health outcomes.6 Indeed studies show that grandchild care leads to health declines when it is compounded by previous health problems and scarce resources. The authors asserted that, “For most grandparents, the demands of grandchild care appear to be balanced by the benefits of caregiving and available resources. Only when demands are heavy and resources scarce will grandchild care itself lead to health declines.”7 Some studies show primarily negative health impacts. Numerous studies indicate that care work may worsen grandparent health, notably for those who are older and whose health is already declining.8 Caring for grandchildren might be linked to higher rates of health problems including diabetes, heart disease, high blood pressure, and stroke.9 One study reported that grandparent caregivers had lower selfrated health and had significantly higher rates of functional limitations.10 A study using the 2012 Behavioral Risk Factor Surveillance System compared health characteristics of solo grandfathers with single fathers, aged 50 years and older.11 Solo grandfathers had higher prevalence of various health conditions, such as diabetes, heart attack, chronic obstructive pulmonary disease, and stroke, compared to older single fathers aged 50 years and older. In fact, the risk for diabetes for custodial grandfathers is approximately twice the national rate.12 Adverse health effects of grandparenting are also linked to grandparent health behaviors. Providing extensive care to grandchildren leaves very little time for grandparents for health management activities.13 For example, some make a point of preparing and eating healthy foods with their grandchildren while others are too exhausted at the end of a day of care work to bother with nutritious meals. One study found that while some working grandmothers caring for grandchildren tended to eat healthier food and get more exercise, others rarely took time to prepare healthy meals for themselves.14 Another study examined the links between physical health and various degrees of childcare

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on a national survey of 3,260 grandparents and found that extensive care work was linked to some limitations in activities of daily living.15 Some grandparents increase exercise as they increase domestic labors including cooking, cleaning, laundry, and grocery shopping while others find themselves too tired to leave the couch at the end of the day.16 Some custodial grandparents neglect their ill health in order to maintain custody of their grandchildren.17 We need more research on the health impacts of caring for grandchildren with disabilities. This type of care is often more intense and time-consuming, hence we expect the health impacts may well be more adverse. Moreover, given that disabilities are not randomly distributed, it is often families with fewer resources that must provide the greatest amounts of care. Thus, as cumulative inequality theory suggests, the negative health impacts of grandchild care are more pronounced for those with fewer resources, especially female, Black, Hispanic, less educated, lower income, and custodial or coresidential grandparents.18

Positive Health Impacts Chasing a toddler across the backyard, walking a child home from the bus stop, and carrying a grandchild upstairs for a bath are all activities that provide exercise. Many of the grandparents we interviewed said that all of the activities they do with and for their grandchildren with disabilities has improved, or at least helped sustain, their overall level of fitness. Whether they have always prioritized exercise, or have increased their activity due to care work, many say it is good for their health and keeps them feeling younger. I Can Run Behind the Grandkids Now, I’m Holding Up Quite Well A few grandparents said that caring for their grandchildren with disabilities has actually improved their health. Anna is quite proud of her newly gained physical abilities. Anna, age 66, cares for Jason, who is seven and has Down syndrome, one long weekend a month. Despite a serious bout of cancer, Anna rarely misses a weekend. I’m fine now. I had rectal cancer about five years ago and would have chemo and then go take care of them for the weekend. That was harder. But now, I feel quite well. I’m done with treatments, the cancer is gone. I’m doing quite well now. My cancer is in remission I’m not on any medication. I enjoy taking care of Jason. I can run behind the grandkids now, I’m holding up quite well.

There Is a Mission and You Get Focused. There Is No Excuse Similarly, Joy says caring for Zak caused her to get up and get going in a way she had not in years. Joy, age 60, cared for her custodial great grandson, who has cerebral palsy and cortical vision impairment, for ten months. Though doctors told her that Zak was, and would always be, a catatonic vegetable, she worked relentlessly on a wide range of therapies to encourage him to walk and talk and eat by

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mouth. She says her career of working with the military shaped her response to caring for Zak. Having Zak energized me. Being retired I would joke that I did not get done drinking coffee till 9:30 am. With Zak we were up and active. There was purpose. I did not get too tired. I attribute to that military training. He depends on me totally. There is a mission and you get focused. There is no excuse.

They Make Me Feel Young Taking grandchildren on the outings keeps many grandparents physically active and feeling younger. Paul, age 69, takes Alex, who has Down syndrome, everywhere. Paul rates his health as good. He feels that caring for Alex has positively impacted his health since he makes it a point to keep a very active schedule when they are together. We go camping. We pick apples. We go hiking. We go swimming. Everything. They make me feel young.

One of the symptoms of Down syndrome is low muscle tone. Paul spends quite a bit of time swimming and doing other activities to improve Alex’ muscle tone. When Alex was little, Paul used to carry him a lot, which kept Paul fit. Now that he is older, they are working on riding a bicycle. He no longer needs us to pick him up because his tone has definitely increased. I’m teaching him now how to ride a two-wheeled bike.

I Make Exercise a Big Part of My Life Some grandparents have always prioritized fitness and have sustained that commitment while caring for grandchildren with disabilities. Jane, age 50, cares for Jay, who is 17 months old and has Down syndrome. She prioritizes exercise in an effort to thwart a family history of disease. I have plantar fasciitis so I have limited mobility right now. But usually I go to the gym five days a week, three days Zumba, I work out at 110%. I’m 50 but want to be 25. I make exercise a big part of my life. My relatives had a lot of diseases, and I don’t want heart disease and diabetes, I don’t want to go that route.

Her commitment to exercise never wanes, but ironically, even though she is a nutritionist, her commitment to a healthy diet does. Indeed, when it comes to her diet, she sometimes ignores her own advice. I’m a nurse educator. I educate people about diet and nutrition, how to make healthy choices. But I sometimes make choices that are not good, definitely not good. Some days I’m very careful and some days I make choices that are not healthy.

I’m Big on Exercise, a Health Nut Similarly, Bree prioritizes her health, even while caring for grandchildren with disabilities. Bree, age 76, cares for Ava, age 13, who has Down syndrome. She rates her own physical health as excellent. She routinely takes her grandchildren on active adventures, including swimming, walking, picnicking, and says she exercises regularly. Additionally, she is a Reiki healer and feels that work benefits her health as well.

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I have plenty of time to take care of myself. I swim five times a week, I ballroom dance, I walk and garden, I’m big on exercise, a health nut, and I do energy work on others and I benefit from that as well.

I Walk Every Morning Because of My Disease Lizzy has also always prioritized her health, in part to stave off symptoms of her disease. Lizzy, age 55, cares for her custodial grandson Mark, who is 12 and has ADHD. She has pulmonary vascular disease and makes a point to walk every day. I walk every morning because of my disease. I used to walk at work but sometimes I missed walking due to overtime at work. I gained 23 pounds because I was just sitting working and I was behind on everything. But I lost the weight and have kept it off. I had two buddies at work and I would walk with them twice a day. We would walk if we got stressed and we would drop what we were doing at work and walk twice a day. Now, that I’m not working, I use the Fitbit and walk two miles every morning.

One Day I Was Looking for Her in the Gym, and Here She’s Holding Hands with Some Grandpa Guy Some grandparents make sure they get enough exercise by taking their grandchildren with disabilities with them when they work out. Joyce, age 61, is happy to include Mindy, age 13, who has DiGeorge syndrome. Though Joyce has had some serious health problems, she had a blood clot due to a fall, she goes to the gym at least twice a week and rates her health as good. Sometimes, she brings Mindy with her to the gym. When she’s not at school, she goes with me. It’s an exercise class for people over 50. And, they actually love her. She’s made a lot of friends there. And, she does it too. One day I was looking for her in the gym, and here she’s holding hands with some grandpa guy, you know that’s in our class. So, yeah, she’s made friends.

She tries to schedule her own medical appointments for times when Mindy is at school as well, though sometimes she brings her along. She feels it is good for Mindy to see that others go to the doctor and get shots as well. It’s very seldom that she’d have to go with us, but sometimes I like to take her because I want her to see that medical stuff happens to us as well as her. . .The last time I took her, I had to have blood drawn so I thought that’d be a good time to take her. She wanted to have her blood drawn too. So, yeah, I think it’s helpful, she pays attention to what’s going on.

I Take a Few Pills and I’m Good to Go Linda works out on her own but then also works out with the grandchildren when they are home from school. Linda, age 61, cares for George, who is five and has Down syndrome, and his brother after school most days and sometimes on weekends. Because George sometimes bolts away from her or refuses to get in his car seat, caring for him can wear her out physically. But she says her health is excellent and so the main impact is that she grows tired. I’m very healthy, and they say it will keep me young mentally. I’m very fit. No issues. I take a few pills and I’m good to go. I go to the doctor once a year just for prescription refills. I can get tired.

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Since they only have the boys after school and on some weekends, they have plenty of time to exercise and stay in shape. Linda says she has OCD and keeps her house meticulous, and that provides a lot of exercise as well. They make good use of the paths in their neighborhood. There is a bike and walking path by our house, and I like to bike. So I bike with my oldest grandson and my husband and I get out and walk.

She is trying her best to remain in good health so that she can continue to provide care for George. Still, as she looks ahead, she ponders what will happen if she becomes frail and in need of assistance. About one thing she is clear; she has no intention of asking her children to care for her. My oldest daughter will always have her hands full with George. She has enough on her plate. I helped with my grandparents and parents. I want my kids to have their own time, not help me. I have told them they are not allowed to help me.

Negative Health Impacts While a few grandparents said that caring for grandchildren with disabilities had no impact on their physical health, many said that the impacts were fairly negative. Several already have major health issues and find that it is particularly challenging to provide care work. Others find that it is the care work itself that is adversely impacting their physical health. Often there is too much chasing, bending, and lifting for their aging bodies. For those who are providing custodial care, there is rarely a break for either exercise or rest. Even if they appreciate that the additional exercise is positive, many are simply too exhausted, and too busy, to care properly for their own health. Some are delaying visits to the doctor and dentist, surgeries, and other needed medical care. I Don’t Think There Is Any Impact on My Physical Health Some grandparents said that the only health impact of caring for grandchildren with disabilities is that it made them more tired. Mia, age 66, cares for all of her grandchildren, including Cally, age 13, who has mild Down syndrome. When she and her husband retired, they moved south to help care for Cally and her brother. Mia works out at the gym and walks regularly, is careful about what she eats, and rates her physical health as better than most her age. Nonetheless, they watch their grandchildren several times a month and it can be tiring, particularly when they watch them all at once. When we have them together it is exhausting. It is much easier to have them separately because of their age span. I don’t think it has anything to do with disabilities. They are six years apart. They are going in opposite directions, though her brother likes to bake as much as she does. I don’t think there is any impact on my physical health. For a long time I was a stay at home mom and then went back to work, and I chose to have children and wanted to spend time with them. Now I want to spend time with my grandkids. I like being a mother and a grandmother.

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I Feel Like Any Time I Have I Need to Rest Because I’m Exhausted All the Time Many grandparents said that although the extra exercise is good for their health, in general caring for their grandchildren with disabilities leaves them far too tired. Arlene, age 53, cares for is Carl, age eight, who has cerebral palsy at least 28 hours a week. She says she tries hard to stay in shape so that she can lift Carl. Caring for him makes her get quite a bit more exercise than she would otherwise. But she is so busy, and so tired, that she is not able to get to the gym or to her doctor or dentist appointments. She has thyroid problems and rates her health as good but worse than others her age. She says she needs to get more exercise, rest, and relaxation. I tried gym, but I had to cancel so many times and stuff, so I just quit. I could probably do it at home to, but I don’t have the. . . I’m not very good at that. I feel like any time I have I need to rest because I’m exhausted all the time. For doctor and dentist, if I have to, I cancel mine and I just reschedule. I’ve done that many times, cancelled my appointments and rescheduled, because he was home sick or something. So, yeah, I’d have to say it does.

I Guess It Has Impacted My Health a Bit Because I Don’t Go to the Doctor’s As Much As I Should Several grandparents told us that they have serious health conditions that they are neglecting because they are so devoted to caring for grandchildren with disabilities. Karen finds that all the extra walking has been good for her, but the lack of rest and doctor visits have not. Karen, age 40, cares her daughter, who has disabilities, and her granddaughter, Pam, age two, who has intellectual disability, epilepsy, and sensory processing disorder. Karen does not work because she provides so much care. She has rheumatoid arthritis and rates her health as good. She says she gets plenty of exercise, thanks to Pam, but needs to be more careful about what she eats and get more rest and relaxation. Because Pam likes to hike, Karen has been hiking more than usual and she says her health is improving so much that she has halted weekly steroid shots. It’s been making me walk, a lot. A lot more than I normally do, and I have rheumatoid arthritis. . . I couldn’t walk for days because my arthritis was so bad. But with walking and hiking I haven’t had to have a steroid shot in eight months. Something I normally would have had to get every week. It’s been eight months since my last steroid shot.

Though there are positive health impacts, there are also negative impacts. Karen is so busy taking her daughter and her granddaughter to all their doctor and therapy appointments that she often foregoes her own. That is hard to do, and it’s because, and I won’t say it’s because of her, but because there are so many appointments. My tooth was busted, and I didn’t know it; it was so bad the humming was so bad in my ear I couldn’t hear. And, it was like needles in my ear. It’s like, alright, I gotta go to the doctor. My daughter told me Pam had an appointment that day too, so I actually called and I made the appointment the same time as hers. And, that way I could actually get in because I don’t normally go to the doctor because I don’t have time. . . It’s like mummy don’t have time! When it boils down to it, and I know I have to go, yes I will break down and make that appointment. I guess it has impacted my health a bit because I don’t go to the doctor’s as much as I should. I’m supposed to go yearly for a checkup, (laughs) that don’t happen.

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I Can’t Exercise Because I Had Knee Replacement So I Can’t Get on the Floor For many grandparents, the combination of poor health and high care demands proves problematic. Irene says she is getting too old and Liam is getting too big for her to handle. Now 73, Irene cares for her coresidential daughter, who has a brain injury due to a car accident, and her four year-old Liam, who has ADHD and Autism. Irene says caring for Liam 20 hours a day has adversely affected her physical and emotional health. She rates her health as very poor and says she needs more exercise, a better diet, and some rest and relaxation. She does not get enough sleep because she cares for him when he is awake at night. It is difficult for her to walk since her knee replacement and she becomes winded easily. Most recently she has had trouble with her back. I can’t exercise because I had knee replacement so I can’t get on the floor. I can’t walk on a treadmill. I used to be able to do that, but I just had back surgery so they gave me some exercise to do for my back. I do them. But, it gets spastic and I then do them.

When she needs to go to the doctor, Irene has to find a babysitter for Liam. She said it is difficult to supervise him; she is not quick enough. And it is difficult to clean up after him because he tends to wreck the house. She says if she won the lottery she would want to use the money to buy herself better health. After Ten Hours, I Got Exhausted Even grandparents who are in excellent physical health find that long hours of caring for grandchildren with disabilities can be overly taxing. Cindy is very fit, but lifting her growing granddaughter is becoming too much. Cindy, age 69, cares for Sara, who has autism. She says she is in excellent physical health, though she wishes she got a bit more exercise and was a bit more careful about what she eats. Spending time with Sara keeps her physically active, but the frequent lifting takes a toll. She weighs about 50 pounds and has low muscle tone, she is still in a crib, and she is dead weight. I will try to pick her up and put her in the crib and that is very difficult. I’m very a young 69, very active type A. Always making deadlines and to do lists. I watched her ten hours Saturday, and she will take me downstairs, upstairs, downstairs, upstairs. Whatever she wants to do, I will do. And after ten hours, I got exhausted. But in a normal four hour visit I don’t get tired. I’m very active, I use a lotta calories.

We Have to Take Care of Ourselves So We Can Take Care of the Kids for All the Years to Come As the years of care work fly by, many grandparents see the toll it is taking on their physical health. Often they wish they could find the time and energy to take better care of their health. Kim, age 59, cares for her two custodial grandchildren, Izzy, age 17, and Matt, age ten, both of whom are diagnosed with ADHD. It’s been hard, my health has definitely declined. I have always been strong and optimistic but the last five years I’m tired and sad and experiencing depression. This was new for me. I felt like giving up. Now I can feel my fire coming back a little. I always took care of myself last, I gained weight, and had menopause while raising grandkids. My husband would come for the weekend and Izzy had teen hormones and I was going through menopause, he faced two crazy women.

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Kim rates her physical and emotional health as good to fair but says she needs to get more exercise and a lot more rest and relaxation. She also needs to watch her diet. She finds it hard to do so in the swirl of the grandchildren’s needs. I need to be better at it, I’m always taking the kids and my husband to their appointments and I just don’t schedule mine. I can, I have the time, and car, and insurance, but I put myself last. I don’t exercise regularly. I used to swim and play volleyball and now it is just whatever I’m doing, not intentional exercise. We are conscious of our age, we need to live to see this through. We have to take care of ourselves so we can take care of the kids for all the years to come.

Unfortunately, My Health Is Kind of Suffering Because of It Many feel that their health is declining due to the amount of intensive grandchild care they are providing. Jill is only 48, but she provides a lot of care for Minnie, who has Down syndrome. She says raising her two sons, working full-time from home, and caring three days and nights a week for a grandchild with so many medical needs has taken a toll on her health. Despite her medical training, she is quite worried that something might happen on her watch. It’s that fear of anything could happen while she’s here, and what would I do is mostly the, you know, the biggest thing I think.

The combination of worry and intense care work causes Jill to go without muchneeded sleep. She says the lack of sleep is by far the most detrimental for her health. She’s up for most of the night. Really it’s just because you’re on 24/7. You can’t put her down. You can’t let her nap for two hours. She constantly has to be monitored. Thankfully, I don’t need a whole lot. Really. I don’t. What I do now, she has to be propped up, so I have a seat for her, and I actually stick the seat between my legs on the bed, and I sit up and I nap while she’s sleeping. And, that or I wear her, like I said, usually, I can wear her so that when she starts fussing, like she’s going to be sick or whatever, I can feel it. I just don’t get a lot of sleep, unfortunately. It’s just kind of the way it is when she’s here, so. I maybe get three hours, combined, of sleep when she’s here.

Since she began caring for Minnie, Jill has developed some health conditions and seen others worsen. At the moment, Jill needs surgery but has postponed it until Minnie completes her surgeries. Unfortunately, my health is kind of suffering because of it. I have gastroparesis. . .and I need to have surgery relatively soon, but my surgery has been put off because I need to do her surgeries first to make sure she’s stable so I can do mine. So, at this point, I’m kind of sick, myself, a good portion of the time just trying to, and unfortunately, running out of medications that work, so that’s been tough. And, of course, lack of sleep doesn’t help that, and not being able to cook a meal I’m supposed to be eating, so we end up doing food I’m not supposed to eat—a lot of that kind of stuff.

She has also put important dental work off until Minnie’s surgeries are done. Though caring for Minnie keeps her walking a lot, she has not had a day off since Minnie was born and yes, she would like one. Yeah, actually, I was thinking about that yesterday. Just one day would be good.

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My Health Has Taken a Toll Grandparents with chronic conditions find that providing care for grandchildren with disabilities day after day, and year after year, can really impair their physical health. Donna, age 63, cares for her two adopted grandchildren. Donna feels that raising these young children is emotionally and physically exhausting. My health has taken a toll; I have Lupus. Lupus is a disease that is exaggerated by stress so this is not good for my Lupus.

I Get Tired, Sometimes I Have to Really Push Myself Serious medical issues have caused grandparents to try to find ways to adapt their care work. In Elsie’s case, she and Curt have had to give up many activities because she is not sufficiently mobile. Elsie, age 62, cares for her custodial grandson Curt, age 11, who has ADHD and learning disabilities. She has been out of work since she was 48 because of disabilities. She rates her physical health as good, and her emotional health as poor, and says she needs to get more exercise, rest, and relaxation and watch her diet more carefully. She has limited mobility and walks with a walker or cane. Keeping up with Curt provides her with muchneeded exercise and helps to stave off depression, but many days, it is simply impossible. I’m out on disability, and I have depression, but needing to take care of Curt is probably really good for me. I have some physical limitations. A few years ago I had surgery on my foot and my mobility is limited, nothing drastic but I have to use a cane, and a walker sometimes, depending on what we do. I can’t do a significant amount of walking, so we have adapted. We don’t go hiking. I get tired, sometimes I have to really push myself, sometimes I just have to say sorry buddy we can’t do that today.

She says she has time during the school year, and when he is participating in summer programs, but does not exercise or go the doctor as she should. She struggles with depression and gets too tired. She uses those breaks to rest. I Don’t Sleep Because of Back Pain, and Sometimes I Don’t Eat All the Day Some grandparents are in such poor health that they wrestle with terrible pain, even as they provide care for their grandchildren with disabilities. At times, Ina is in so much pain that she cannot sleep or eat properly. But caring for the grandchildren tends to keep her mind off the pain. Even though she has paralysis in one leg, Ina, age 46, and her husband care several days a week for Ray, age three, who has Down syndrome, and his little sister. She says they have plenty of time for her doctor appointments while Ray is at school. And she and Ray do water therapy together in her backyard pool. We just do my, all my doctor appointments, during the day while they are at school and daycare. And we have a home gym and we can work out here. We can do it all here. Easy to fit it all in. We put in a resistance swim pool here that I can do my back exercises and then we can take Ray in for core muscle therapy. He has weak core strength. He did not walk until he was two. We are always trying to figure out how to help him. He can strengthen in the resistance pool at our house.

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Though she is doing a lot of therapy, there is little relief from her back pain and at times the pain causes her to skip meals and miss much needed sleep. She is struggling to find ways to ease the pain. I don’t sleep because of back pain, and sometimes I don’t eat all the day so then I just don’t eat. I only sleep about two hours a night. I’m going to get a spinal cord stimulator and that should help me sleep more. I need to get more sleep and rest.

She says when the grandchildren are there it relieves her pain; she is too busy to notice it as much. She spends as much time with them as she can. I Don’t Think He’ll Go Out for a Walk with Me The combination of poor health and poor resources leaves some grandparents unable to attend to their own physical wellbeing. Denise, age 55, has been unemployed since she lost her job 11 years ago. She lives with her only son and grandson and provides about 50 hours a week of care for her grandson, Nelson, age ten, who has Autism and ADHD. The three of them have just one poorly working car and an annual household income of less than $20,000. Denise is in poor health, but she has little opportunity to take care of herself. She does not have a car to drive to, or the money to pay for, a doctor or dentist visit. She cannot leave Nelson unattended, so she cannot go out to walk and get exercise unless she can talk him into coming with her, but he refuses. Because my son doesn’t want me to leave Nelson, and I don’t think he’ll go out for a walk with me. I’ve tried to ask Nelson, “Let’s go take a walk.” And, if I pushed it, it would lead to a row.

She describes herself as a shut in. She needs to renew their SNAP benefits, but to do so she has to borrow the car from her son and coerce her grandson into accompanying her to the office. She has not yet managed either. If the renewal process could be handled by phone or internet, they would not have to do without SNAP. If I Don’t Feel Good, I Feel Like I Still Have to Have the Kids Here Several grandparents said that no matter how badly they feel on any given day, they feel like they still have to care for the grandchildren with disabilities. If they were working at paid jobs, they could call in sick. But they don’t feel they can call their adult children and tell them to make other arrangements, in part because there are so few options for care of children with disabilities. Chris, age 67, cares for Wendy who is ten and diagnosed with anxiety disorder and has autism like symptoms, and Mark who is seven and diagnosed with ADHD and Oppositional Defiant Disorder (ODD). Her husband has had a traumatic brain injury and is on the heart transplant list. The decision for her to retire early, and the two of them to move cross country and watch the grandchildren after school every day and sometimes on weekends has not been easy on his health. And because Mark has violent outbursts, and neither of them is strong enough to manage him on their own, her husband is now helping to provide a lot of childcare.

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I wanted to move here more than he wanted to. It was hard switching the heart transplant team. He was with that team for six years. He is very worried about how Mark is going to turn out. It’s been a big change. Because of his disability, he has been so accustomed to being home alone, for ten years, and me at work all day. He had the house to himself and could do his things. With the move, and caring for the kids after school four days a week and some evenings and weekends, that this has really interrupted the flow. It’s a big change in his life.

Chris’s health is also not very good. She rates her health as fair, and she and her husband our both concerned about the ramifications of her providing this much child care after two heart attacks. He is worried about my health too, I had two heart attacks just before we moved here to care for the kids. He is worried that I’m doing too much.

Given their overall poor health, it seems reasonable that they would need days off occasionally to rest and recover. But Chris says they feel that they cannot really have a day off, even when they are not feeling well. If I don’t feel good, I feel like I still have to have the kids here. I have had some health issues. . .But they are so busy and they really count on us. I feel like I have to take the kids. I had an abscess in my tooth, and it really hurt a lot, and I would have taken a day off from my job, but now I don’t feel I can. Or if my husband is having a bad day, like when he fell in the night, I still felt I had to take the kids. I didn’t get any sleep, I was so worried, and still I had to take the kids the next day. My daughter says I should not feel this way. But I do.

She and her husband have significant health problems and though they are currently providing almost daily grandchild care, they are not at all confident that it will be reciprocated when the time comes. I have wondered many times. If we need them, they say they will help. But I don’t think they have any time. If we needed care, I would have to learn to ask for the help that we need. They always say, “Neither of you will go to a nursing home. You will live with us.” But I think, oh lord how will that work? If something happened to me, my husband would have to live with them. He could not live alone; it would be too much risk.

Chris says she does not think they will be able to live with her daughter. That house is too high strung, and their parenting styles too different, and yet she would never be able to breathe a word. Even the thought of living there spiked her anxiety. But us living with them? I think it would be too stressful. Two parenting styles in the same house, and I’m not going to cause a problem so it will be all internalized. I won’t let myself say anything, fairly stressful.

The Stress of Trying to Work Full-Time and Take Care of a Child with Special Needs Many of the grandparents we interviewed are working and providing care for grandchildren with disabilities. Wearing that many hats at once can adversely affect physical health and leave them with little time to address their own wellbeing. Some find that they are forfeiting a lifetime of good health habits as they face multiple responsibilities. Candi, age 61, cares for her custodial granddaughter, Aly, age 12, who has ADHD and asthma. Since her second husband died, and she has been

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responsible for Aly on her own, her stress levels have risen and adversely affected her physical health. Moreover, when Aly does not feel well, neither does Candi. Yes, it has affected my health, I have never been the healthiest person. I have had everything taken out that can be taken out. Since he died I constantly have stomach issues, the stress of trying to work full-time and take care of a child with special needs. And those needs are growing now as she grows, her emotions rise and that ties into everything. She does not feel good and I get stressed. The stressors are there all the time, all around you, and with no help.

Being overwhelmed by responsibilities and losses has made taking good care of herself all but impossible. I used to be really good about diet and exercise. We have had a lot of deaths, and loss, and stress, issues, and it all just piles up on you and some days you don’t think you will make it out of it all.

I’m Not a Spring Chicken Anymore Similarly, at age 60 Marina has had several significant health problems and her intensive play with Carly, who is two and has Williams syndrome, takes a toll. Physically, it drains me. I’m not a spring chicken anymore. It is tiring. I have to be to bed by 9 pm I can’t handle anything later than that. I have had knee replacements and spinal fusion but I still get on the floor and play with her, and do backward rolls. I do what I have to do and I do get tired. I find it very rewarding watching her and seeing her grasp something I’m trying to teach her. How delighted she is. It truly is rewarding.

Rewarding though it may be, Marina says that caring for Carly, in addition to taking care of her other grandchildren, her father since his stroke, and her part-time job, affects nearly every aspect of her physical health. She is so busy she is not able to eat, exercise, or rest sufficiently. I need to eat more carefully. You don’t eat like you should when you are watching your grandkids. You are so busy doing for them.

She cares for Carly Monday through Wednesday, so all other responsibilities have to be wedged into the remaining four days of the week. I can schedule appointments for Thursdays and Fridays. Mondays through Wednesdays are shot. I have the other four days to take care of everyone else. I try to work out, I have a stationary bike at home, I can ride in the am before she gets here. I can also read my iPad. I get things done as long as nobody else bothers me. I need to get a lot more rest and relaxation. A lot more. There are not enough hours in any day. I have no time to rest.

Marina is concerned about what will happen if her health continues to fail. Will anyone be available to care for her if she needs assistance? It seems unlikely given how much effort her son and daughter-in-law expend caring for Carly. Her plan is to be as self-reliant as possible. I’m not sure if my kids will care for me when old. It could go either way, I see how hard it is for my dad with his stroke. They might not be able to care for me because they have a lifelong commitment to care for Carly. I think you have to do as much for yourself as you can. I think I need nursing home insurance. I’m going to look into it. See the cost factor. I think I need it. Now with my dad’s stroke, I see how difficult it is. My sons and their wives are busy with their jobs and their kids.

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If I Did Not Have So Many Grandkids, I Could Take Better Care of Myself Colleen was especially frank about how caring for grandchildren with disabilities diminishes her wellbeing. Colleen, age 62, cares for all of her grandchildren, including, seven year-old Sam and two year-old Kit, who have Down syndrome. She says working full-time and caring for the grandchildren evenings and weekends interferes with taking care of her own health. Though she rates her health as excellent, she readily provides examples of self-neglect. I don’t go as often as I should. It had been a few years since I saw the dentist. I do need to go to the doctor, I need medication for my thyroid condition. I don’t totally ignore myself. If I did not have so many grandkids, I could take better care of myself. I’m healthy, no big medical issues. I don’t work out. I get zero exercise.

I Can’t Keep Up With Him Reduced mobility can make grandparenting children with disabilities all the more challenging. Maria can’t run, and Marco can. Each year he gets a little faster and she gets a little slower. Maria, age 71, recently had a total knee replacement. It has become difficult watching Marco, who has Prader-Willi, since she has to physically restrain him at times to prevent him from escaping from her watch. When he was a little it was different. Now that he is big I'm just so afraid. Because I'm afraid, because you never know when he is going to act up. I can't keep up with him. So I don't take that chance. . .I’m not very physical. I don't want him to start running. You know even from the house. Sometimes he would go outside on the porch. I get so nervous.

It Is Getting Harder With Age, Physically Reduced mobility is also making it increasingly difficult for Jean to keep up with David. Each year he is able to walk longer, and she shorter, distances. At 70, Jean drives one and one-half hours, from a neighboring state, to provide care every weekend for David, who is six and has Down syndrome. In the last two years, I used to be able to walk a mile. . . When David was little, I used to put him in the stroller and go up to the park, then to the Botanical Garden, and so forth. And we walked a mile. But now I have sciatic nerve that goes down my legs. If I walk very far it starts to hurt. It is getting harder with age, physically.

She Gets Tired and She Wants to Be Carried Sometimes and I Can’t With increasing age and health problems, many grandparents find that it is difficult to lift their growing grandchildren with disabilities. Jennifer finds it difficult to lift Tina. Jennifer has five children, two stepchildren and seven grandchildren. She is a 60 year-old white, widowed, full-time teacher. Her two year-old granddaughter has cerebral palsy. She gets tired and she wants to be carried sometimes, and I can’t. So at My Age That Can Be a Bit Difficult Similarly, Kelly finds it difficult to carry Maya, who has cerebral palsy, though she applauds Maya’s initiative. She was the type of girl who would always say “I can do it myself.” So watching her used to be very challenging because she used to love going up the stairs. So I would have to be right

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behind her and at times I had to carry her up the stairs for her not to fall. So at my age, that can be a bit difficult.

I Don’t Think I Could Physically Do That At 73, Frank also feels that carrying AJ, who is 11 and has autism, has become too much for him. In fact, it has become quite physically challenging for Frank to take care of AJ. The older he gets the more difficult it becomes for my wife and I to be his primary care takers because he weighs 70–80 pounds. In fact, the last time that he had him at our home and the parents were away, we hired a person who works with autistic children to come over for seven hours a day to help us out. Being alone with him is the most difficult part. When the parents are here if we’re on our own we can do things but only for a couple of hours, it’s not a 24/7. I don’t think I could physically do that.

The Most Challenging Is the Physical Part of It Rose, age 64, echoes similar thoughts. Each year she becomes a bit weaker and Mia, who is eight and has cerebral palsy and is quadriplegic, becomes a bit heavier. Rose finds it physically challenging to carry Mia around. Well the most challenging is the carrying. When my daughter and son-in-law go out, getting her in and out of the stroller, getting her in and out of the car, lifting her up to the changing table, the most challenging is the physical part of it.

While babysitting Mia, Rose spends quite a bit of time holding her. As Mia is getting older, Rose is finding this task to be quite difficult since she can hardly get up while holding Mia. I can’t take her out alone. If I do bring her home from church or something my grandson will help get her out of the car. No, I will sit in the chair and hold her while my daughter goes and picks up other kids but I don’t get out of the chair. If it’s an emergency I get out of the chair but I don’t on a regular basis get up and move around with her anymore. I used to.

Since Mia’s diagnoses, Rose has put on some extra pounds but she worked hard to take it back off. Originally, yes, but I spent so much time sitting in a chair that people were bringing us meals and I gained a lot of weight. There were chips on the table, there were always cookies there, when people-when they bring in meals they bring more fatty meals than what you need. So yes, I gained weight, my daughter gained weight, but I have taken all that weight off in the last four years plus more.

Aquatic therapy has been proving to really help with Mia’s condition. Rose has picked up swimming in addition to biking to help with her physical health. I ride my bike every morning at six o’clock. So nothing interferes basically with doing that and then I swim every day. And my daughter and son-in-law put a pool in. One of the main reasons they put it in is for Mia because swimming really is a good thing for her; she loves being in the pool, she kicks and she squeals.

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Physical Wellbeing Grandparenting children with disabilities can be good, and bad, for your health. Positive impacts are plentiful. Extra physical activity and better nutrition can combine to leave some grandparents feeling quite good, albeit quite tired. Some grandparents sustain a lifetime commitment to good health habits, regardless of their other responsibilities. Some find that due to care work, they are now stronger and more physically agile than they have been in years. Others make a point of staying fit for their own good health and so they can continue to perform care work for a long time. But negative impacts are also plentiful. The combination of health issues, coupled with intensive care for grandchildren with disabilities can be deleterious. Chasing, lifting, and bending takes a toll. Working so many hours per day, often in a combination of employment and care work, can leave middle-aged people too tired, too depleted, and too busy to properly care for their own health. We talked with grandparents who are foregoing exercise, proper meals, rest, and sleep. We also talked with grandparents who are delaying doctor visits, dental care, and surgeries. Some have existing health problems that make care work more difficult while others are developing health issues in response to the care work. For many it is a mix of positive and negative impacts as increased exercise and healthier diets are undermined by lack of rest, aching joints, and delayed health care.

Notes 1. Whitley and Fuller-Thomson (2017), Findler (2016), Abdul-Malak (2016), Crowther et al. (2015), Whitley et al. (2015), Chen et al. (2015), Harrington Meyer (2014), Luo et al. (2012), Cohen et al. (2011), Igel and Szydlik (2011), Musil et al. (2011), Population Reference Bureau (2011), Baker and Silverstein (2008a, b), Baker et al. (2008), Cox (2007), Hughes et al. (2007), Mitchell (2007), Bachman and Chase-Lansdale (2005), Hayslip and Kaminski (2005), Blustein et al. (2004), Kataoka-Yahiro et al. (2004), Lee et al. (2003), Musil and Ahmad (2002), Janicki et al. (2000) and Minkler and Fuller-Thomson (1999, 2005). 2. Lent and Otto (2018), Baugh et al. (2016), Caputo et al. (2016), Choi et al. (2016), Di Gessa et al. (2016), Lee et al. (2016), Moore and Rosenthal (2016), Chen et al. (2015), Clottey et al. (2015), Fredman et al. (2015), Siordia (2015), Hadfield (2014), Harnett et al. (2014), D’Astous et al. (2013), Perkins et al. (2013), Langosch (2012), McNee and Jackson (2012), Bigbee et al. (2011), Kelley et al. (2010), Lee and Gardner (2010), Neely-Barnes et al. (2010), Toremann (2010), Green (2001), Heller et al. (2000), Schulz and Beach (1999) and Schilmoeller and Baranowski (1998). 3. Chen et al. (2015). 4. Chen et al. (2015). 5. Chen et al. (2015), Luo et al. (2012), Igel and Szydlik (2011) and Hughes et al. (2007). 6. Carr (2019), Baugh et al. (2016), Choi et al. (2016), Noy and Findler (2016), Doley et al. (2015), Siordia (2015), Hadfield (2014), Harnett et al. (2014), Hayslip and Page (2012), Langosch (2012), Scommegna (2012) and Conway et al. (2011). 7. Luo et al. (2012), Igel and Szydlik (2011) and Hughes et al. (2007: S115).

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8. Lent and Otto (2018), Baugh et al. (2016), Choi et al. (2016), Lee et al. (2016), Clottey et al. (2015), Siordia (2015), Hadfield (2014), Harnett et al. (2014), Langosch (2012), Bigbee et al. (2011), Kelley et al. (2010), Neely-Barnes et al. (2010) and Toremann (2010). 9. Whitley and Fuller-Thomson (2017), Cohen et al. (2011) and Lee et al. (2003). 10. Minkler and Fuller-Thomson (1999). 11. Whitley and Fuller-Thomson (2017). 12. Carr (2019), Noy and Findler (2016), Hayslip and Page (2012) and Scommegna (2012). 13. Chen et al. (2015), Igel and Szydlik (2011) and Hughes et al. (2007). 14. Harrington Meyer (2014). 15. Minkler and Fuller-Thomson (2001). 16. Moore and Rosenthal (2016). 17. Gilbert (1998). 18. Noy and Findler (2016), Luo et al. (2012), Igel and Szydlik (2011), Anderson and Turner (2010), Baker and Silverstein (2008a, b), Baker et al. (2008), Hughes et al. (2007), Hayslip and Kaminski (2005), Blustein et al. (2004), Kataoka-Yahiro et al. (2004) and Kolomer et al. (2002).

Chapter 16

How Policy and Place Matter

Our analysis of 50 interviews with grandparents caring for children with disabilities reveals that they have very diverse experiences. Nearly all talk about love, laughter, and close bonds. From the moment their grandchildren are diagnosed with disabilities, a process that is much easier for some than others, they begin to provide care. For some the care work is minimal and they can easily take it in stride. For others it is intense and performed over many hours and years. To various degrees grandparents struggle to manage the demands of employment, other family members, financial needs, or becoming coresidential or custodial grandparents. Care work reshapes their retirement and travel plans, as well as their financial, social, emotional, and physical wellbeing. We found strong support for cumulative inequality theory in that those providing the most care with the fewest resources are more likely to contribute more funds than they can afford, retire early, forego social lives, report emotional distress, and neglect their own physical health by foregoing exercise, proper nutrition, and medical and dental care. For the most part, they need more support than they are getting. They need fully-enforced federal laws so they do not have to use muchneeded money, time, and energy fighting for ramps and special education. They need support groups for grandparent care workers, responsive and empathetic schools and health care providers, and social welfare programs that are stable and expansive. Clearly our dearth of national programs to support working families, particularly those who have children with disabilities, is most harmful to families with less income, education, and expertise. Developing such supports would provide the greatest assistance to those who need it most. Life course perspective provides a framework for understanding intergenerational family member interactions and interdependencies across different stages of the life course.1 Life course theory suggests that the impacts of what happens in our lives depends in part on how old we were when it happened and the degree of supportiveness of people in our social networks and of social policies. In this book we examine the types of care grandparents provide for grandchildren with disabilities and employ a cumulative inequality framework to evaluate the impact of this care work on grandparent wellbeing. We find wide variation. Generally, those with more © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6_16

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resources, higher incomes, better educations, and better health tend to provide less care and incur fewer adverse impacts. Their grandchildren tend to have less severe diagnoses and their adult children have more resources with which to respond to disabilities. They tend to have better access to better medical care, early and more comprehensive diagnoses, and help from paid professionals. They are often living in, or have moved to, areas with proactive early intervention programs, attending resource rich public or private schools, and willing and able to expend money for lawyers who can insure that their grandchildren receive benefits. Their early life course advantages have accumulated and launched them, their adult children, and their grandchildren into more advantaged situations. As a result, these grandparents incur fewer adverse impacts on their financial, social, emotional and physical wellbeing. They are better positioned to relish the joys, and circumvent the difficulties, that accompany caring for grandchildren with disabilities.2 Conversely, those with fewer resources, lower incomes, less education, and poorer health, tend to provide more care and incur more adverse impacts. They are more likely to have grandchildren with disabilities, and those children are more likely to have multiple, and significant, disabilities. Grandparents with fewer resources are also more likely to have multiple grandchildren with disabilities. They are more likely to be single grandparents, have adult children who are single parents, and to have insufficient resources to export care work to paid professionals. They are more likely to have adult children struggling with addiction and mental health issues, become coresidential or custodial grandparents, and provide aroundthe-clock care. They are less likely to have access to high quality health care and proactive, comprehensive diagnoses. They are more likely to live in resource poor areas, their grandchildren are more likely to attend resource poor schools, and the entire family is less likely to be able to afford to move to resource rich areas. They can rarely employ lawyers, are more likely to struggle with red tape surrounding social welfare programs and the enforcement of federal laws, and more likely to see their grandchildren do without needed therapies. They are more likely to provide sequential or simultaneous care work, locked in a cycle of never-ending care work. Their early life course disadvantages have accumulated and launched them, their adult children, and their grandchildren into less advantageous situations. They incur more of the adverse impact of care work on their financial, social, emotional, and physical wellbeing. They struggle to enjoy the pleasures of grandparenting. They often face squarely many of the hardships that can accompany care work.3 Caring for grandchildren may well be emerging as a stage in the life course, but some grandparents are clearly better positioned than others to absorb the impacts of this care work.4 Why do grandparents provide so much care for their grandchildren? Are they, as exchange and reciprocity theories suggest,5 providing care for their grandchildren with disabilities with the expectation that the younger generations will in turn care for them when they become frail? While a few say they hope so, most of the 50 grandparents we interviewed said that the younger generations will be far too busy taking care of children with disabilities to care for the older generations when they are frail. Moreover, for those grandparents who have become custodial

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grandparents, there often is little contact across generations, and no expectation of future care. Are grandparents providing care for their grandchildren with disabilities, as feminist theories suggest,6 because they are adopting, or resisting, gendered roles? We found that care work remains quite gendered.7 Most women told us that they performed a wide array of care work. Some said their husbands helped, but many noted that their husbands did not help, or did less work, or set more limits. Grandmothers who do set limits, often by keeping jobs they do not need, attempted to make sure they are not providing even more care work. Thus, they talk about the care work they, and their husbands, do and do not perform, but they do not talk in gendered terms. For example, not one respondent questioned why women, and not men, were doing so much of the care work. In fact none addressed gender differences in care work at all. Those who were limiting care work were doing so to preserve other interests in their lives, not to take a stand against gendered care roles. Are grandparents providing care for their grandchildren with disabilities, as political economy theories suggest, because they are responding to unmet needs?8 Given on-going efforts in the US to devolve and retrench welfare programs, it is no surprise that we found tremendous evidence of grandparents responding to unmet need.9 Alternative childcare options are often inadequate or too expensive; federal laws are unevenly enforced, poverty-based programs are inadequate and intermittent, schools do not provide sufficient supports, health care providers do not seem to understand the complexities of disabilities, parents do not have sufficient paid time off, respite care is rarely available, the costs of treatments and therapies is often exorbitant. Grandparents provide so much care because their grandchildren’s needs are not otherwise being met. Grandparents provide so much support because the U.S. welfare state does not. For some, grandparenting is mainly a matter of choice; alternate options are available but both the grandparents and the parents prefer grandparent care. For most, however, providing care is a necessity; there are few other options and even fewer resources with which to pursue them.

Place and Policy Implications Grandparenting children with disabilities requires access to resources including caregiver support groups, early intervention, special education, comprehensive therapeutic programs, reliable medical care, and stable and responsive social welfare programs. Most supports are contingent on places where families live. Often poorer areas offer poorer supports. Poorer families are more likely to have children with disabilities and to have more severe expressions of their impairments. Yet they are also more likely to live in areas with fewer programs and services that will help them respond to disabilities.10 Unequal resources lead to unequal impacts of care work. The US could provide a national network of programs that assures all children with disabilities a full slate of enriching services, regardless of where they live. It does not. One of the most

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common points that grandparents mentioned when discussing services and resources for their grandchildren with disabilities is just how much place and policy matter. Where you live determines how you live. Few services or resources are national in scope, most operate at state, county, or city level. Thus, where you live determines what might be available to you. And what might not. Instead of a well-organized national policy network, the US offers a fragmented system of programs that vary at the state, county, and city level. Programs like caregiver support groups, or free tumbling for children with disabilities, or GiGi’s Playhouse, are all locally created and operated. Your city may have all three, or it may have none of the three. Programs such as early intervention and special education, though created by federal law, IDEA, vary widely by state and town. Programs like SSI, Medicaid, and SNAP are federal, but these poverty-based programs vary widely by state, are beleaguered with red tape, and focused on gatekeeping. Federal entitlements for children with disabilities would provide systematic, easily-accessible, stable benefits to all children regardless of where they live and free grandparents and parents from the endless red tape imbedded in poverty-based programs. A few of the grandparents we interviewed live in relatively resource rich environments and felt that there were numerous programs that were easily accessed and that anticipated their needs. These grandparents talked about how great services and resources were in their area. They felt confident that their grandchildren with disabilities were being given the best chance possible to develop fully. Heidi described a rich and proactive service and resource environment for her grandchildren. Heidi, age 59, works 50 hours a week and cares for her four yearold grandson Max, who has Down syndrome, as well as her other six grandchildren. She and her family make extensive use of services available for families working with Down syndrome, and particularly treasure GiGi’s Playhouse. They are living proof of how much place matters. When programs are local, rather than federal in scope, some counties or cities are resource rich while others are resource poor. Her particularly county in Iowa, which we do not reveal to protect her identity, provides proactive early intervention and Heidi is very grateful. A lot of folks in our area have Downs, and we have GIGI’s Playhouse near here. We go to the gala every January, and the walk every August. It’s a phenomenal resource and my daughter has used it. They provide so many activities and services and supports. Phenomenal!

She is particularly grateful for the on-line educational and support networks and makes extensive use of them when she has questions or concerns. I am part of a web chat group on Facebook, on a few sites, and just being in that and reading on those sites, is a big help. There is a lot of information and support that was not there 15 years ago. It’s really cool, It’s come a long way. So far Max has never had anyone been mean to him. It will happen someday, but not yet. Kids flock to him right now. Hopefully it stays that way. When they are older and not a cute little kid, it might be different. But there is so much more information out there now. They teach kids at school today about special needs kids and it’s a different place.

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Heidi explains that their county is highly proactive in identifying children with disabilities and provided resources at no cost. She wishes these programs were national in scope so that all children received early intervention. If you have a child with a disability or who spent time in the NICU, in our county in Iowa, they automatically get into a program for first three years of life. They automatically get you therapy. They come to your house for speech, OT, PT, whatever you need. First three years of life, no cost, for the whole county. I know that all of the therapy through CHILD SERV and other programs is at no cost to the family. There are a lot of resources here.

She says each year they make an outline of goals for Max and each year he has surpassed their expectations. She often accompanies Max and his mother to therapies. She is confident that his impressive development is due, in part, to the proactive therapies and resources available at no cost. She wishes everyone had so much support. Most told us just the opposite. Most told us that there were few services or resources, they were hard to find or access, and they often provided supports that were too little too late. Our respondents offered numerous suggestions for improvements, including (a) easier access to in-person and on-line support groups; (b) better supports through early intervention and special education; (c) enriching social programs; (d) comprehensive medical and respite care; and (e) stable access to social welfare programs. Some have already moved to more resource rich areas while others are contemplating such moves. But for many, moving is not an option and as they wish for more and better services and resources, their grandchildren grow older without them.

Easier Access to In-Person and On-Line Support Groups Supports for grandparents tend to vary geographically. In-person and on-line support groups can help grandparents cope. Peer-led support groups “are providing mutual support, eliminating isolation, and sharing the challenges of raising grandchildren with others in similar situations.”11 AARP has a listing of hundreds of support groups for grandparents and some are specific for specific disabilities.12 These support groups are designed to provide grandparents with information about their grandchildren’s unique needs, emotional support from their peers, and assistance adjusting to the diagnoses of grandchildren with disabilities.13 In some geographic areas, such support groups are plentiful while in others they are nonexistent. Place matters. Having access to in-person and on-line support groups was pivotal for many of the grandparents we interviewed. Those who have several support groups talk about how important they were for garnering information, fielding questions, offering suggestions, forming opinions, advocating for their grandchildren, celebrating joyous occasions, and offering consolation during difficult times. But many have no options, or could not find options. The hunger for more in-person support groups

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was palpable among some of our respondents. Many find that the listings for support groups are outdated and inaccurate; meetings times or locations have been moved or meetings have been discontinued. Others find that meetings are only offered while they are at work or for those with specific diagnoses. Those in rural areas report that there are no caregiver support groups at all, while those in large cities report that there are held in very few locations, thus they face long, even prohibitive, drives to support groups. Even with widespread access to the web, many talk about how difficult it is to find support groups for their particular diagnoses and sets of experiences. Those who have found meaningful in-person or on-line support groups often find them to be valuable lifelines. Those who have not often wish they could. Perhaps the single biggest request we heard was for more and easier access to support groups. Some grandparents readily find multiple on-line support groups and make use of them frequently. Linda finds participation in an on-line support group very helpful as she tries to address her grandson’s Down syndrome and her daughter’s worries. The groups chat about fears, concerns, plans, advice ranging from the big picture to tiny details. She is very grateful for this group support and wishes there were more forms of group supports available to grandparents and parents of children with disabilities. She has posed a wide variety of questions for discussion by the group. Sometimes we open up on these topics in the on line group. Some families home school and I wonder if that would be better for George. Or a smaller classroom. He mimics behaviors – so if he sees someone else throw things, is he mimicking someone else when he throws things? Or is that just George. . .There are times when it’s overwhelming for my daughter, just how hard it can be. Everything you have to worry about. Impulse control. Has he learned this? Does he know his numbers? His speech, bolting, safety?

Conversely, Jill is one of many grandparents we interviewed who wishes there were more readily available support groups for grandparents caring for children with disabilities—both in-person and on-line. Jill cares for Minnie who has Down syndrome, a heart defect, and an intestinal disorder. She wishes there were better on-line supports available for parents and grandparents so that as soon as they get their diagnoses they could reach out to someone with similar conditions and see what the future holds for their family. Honestly, the biggest thing for us has been those groups on Facebook. They have been life savers for us. I mean, that is the one thing that got us through this whole thing. If it wasn’t for the groups of people we met there, I don’t think we would be where we are. . . You know, as soon as the mother gets a diagnosis, give them our phone numbers so we can sit and talk with them. You know? I’d love to see something like that happen somehow. I would have loved to have had that happen. Having another grandma come and sit with me and say “This is what my life is like. This is what has changed with me.” You know? That would have been helpful, but. And, we’re everywhere. There’s so many of us. It’s crazy.

Those who long for in-person support groups often find that there are none that are appropriate and convenient. Studies show that programs such as Grandparents Raising and Nurturing Dependents with Disabilities, which provides familycentered case management such as phone calls, nurse visits, home visits, monthly

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group meetings and referrals, can positively impact the emotional and physical wellbeing of grandparents providing custodial care.14 Linking custodial grandparents with other custodial grandparents—and with much-needed services and supports—helps facilitate a smoother transition for grandparents and grandchildren alike. Lizzy cares for her custodial grandson Mark, who has ADHD. She found that there were so few support services for grandparents raising grandchildren that she started her own web site. There are not many programs around here for anything like special needs. I tried to find a group of grandparents, and one was listed in the newspaper but it never happened. So there is not one. So there is not support. I do know one grandparent who is raising her grandchildren but she has stage four cancer and her daughter is doing better now, though she still has the grandchildren. There are not supports for me or for Mark. I do have on-line groups and that is helpful. And he is not so pronounced, and I am used to it. I think with the meds, it is not too much, I really don’t need help with him. I don’t need a break from him either, he is in school all day. I just need him to go to sleep.

Lizzy notes that it is a world of difference raising grandchildren in middle age than it was raising children at younger ages. Being older slows her down and makes her more tired. Additionally, raising a child whose mother used drugs creates special concerns. In Mark’s case, in addition to having ADHD, his father died and his mother acts like a sister, thus he is sad at times. She imagines how helpful it would be to be able to talk with grandparents her age about such delicate issues. There are a lot of grandparents out there who get tired, and there is not a lot of help for grandparents raising grandchildren. We need to have different things available than for younger people. It is hard to go to work 40 hours a week plus and care of a grandchild when you are older than when you are younger. I think it’s important that when you are raising them, and they are not with their parents and they have issues. We need extra supports. Grandparents raising grandchildren need more opportunities to work from home, some help helping the kids. The kids have issues because they are not with their parents. They need someone who is home and not extra tired.

Moreover, she is quick to point out that the grandparents only have custody or guardianship of the grandchildren because there are problems in the middle generation. In addition to having disabilities, many grandchildren are struggling with the adverse effects of their parent’s issues. For a lot of kids, their parents were doing drugs and now the kids have problems. Mark has ADHD and his sister has autism, special needs are involved and they need special programs to help. They need to feel there is someone home for them. I want to help the grandparents deal with exercise, everything. It is so different when you are older. It takes me longer to do the laundry than it did before just because I am older. . . I’m not in my twenties anymore. I need more hours in the day, it is harder on me physically and mentally now that I am older.

Several grandparents felt that they were invisible, and were glad we were writing this book to make their efforts and challenges more visible. If they were more visible, maybe there would be more readily available support options for them. Ina cares for Ray, who has Down syndrome. She is eager to do whatever she can to help her daughter, and she wishes there were more resources to tell grandparents how to help when grandchildren have disabilities.

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When Ray was born I was looking for things for grandparents and I could not find anything. I am glad that you are writing a book for grandparents who support their kids and grandbabies. I did not know how to help my daughter. Other than be there for her. The best thing is that we can take the kids and give them a break. Be grandparents, be active in their lives. Treat them like normal kids. I could not have done it without my own parents. I want my grandkids to love me as much as mine love their grandparents. I think lot of people are scared of Down syndrome, but from what I have seen and experienced, all kids should have it. He is the sweetest little guy and the best behaved kid I have ever seen.

Grandparents in rural areas repeatedly told us that there were few to no supports for them, for the parents, or for the grandchildren. Driving long distances for programs becomes untenable; all three generations tend to do without needed supports and therapies. Jane cares for Jay, who has Down syndrome. She and her husband live in the country and are frustrated that there are so few services and supports for families, particularly when children are younger. I wish the programs weren’t so spread out over the large city. When our daughter and grandson lived here with us the programs were 45 minutes away. Nothing for rural families. Where she lives now she does not belong to any Down syndrome support programs; they are two hours away. I wish there were more locations, in rural areas. When he is older there will be a lot more programs he can participate in. There is not much for his young age.

Those who work, or provide many hours of care, wish that in-person support groups were available evenings and weekends. Rae is making due with on-line support groups because she can only occasionally drive all the way to the in-person support group. She would prefer that in-person groups were more plentiful and convenient. Rae cares for Paul, who has Down syndrome and immune deficiency. She finds her on-line grandparent support group to be a big help. There is a group in the city and I just started going and they meet every week and I go when I can to discuss things. Sometimes you wonder what could be done. But my daughter is so connected and she keeps me informed. It would be nice to talk with the grandparents out there who don’t know what to say or what to do.

She is particularly appreciative of efforts to inform older people, and those with older ways of thinking, about newer ways of thinking and talking about those with disabilities. A lot of times people have the old mind set about special needs children. A lady told me that her dad said that 60 years ago, his cousin with Downs was put in a corner; there were not the resources that we have today. We need ways to let older people know, through literature, books, to get them up to speed about how it is now, the correct way to talk. People need information. I find groups are good. Time with other grandparents to talk and reach out and share stories.

She values her on-line support groups but wishes there were more face-to-face groups weekends and evenings for those who are employed. When I worked, I minded that the groups were meeting in the mornings, so I could not go. I was always asking, can they meet at evenings or weekends. But now I am not working and I can go Thursday mornings. Just so you can ask questions: My grandson has a hard time getting his hair cut, anybody have suggestions? So many grandparents do not even know these groups exist. My daughter helped me get connected. You need those connections with people your own age. We need more groups, evenings and weekends, to talk.

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Many grandparents are well aware that finding support groups would help them find better services and resources for their grandchildren with disabilities. Joy is incredulous at the paucity of supports for grandparents caring for grandchildren with disabilities. Joy cares for Zak who has cerebral palsy and cortical vision impairment (CVI). Her words echo the importance of place. New Mexico is very behind the curve, behind on services and world views. So when I said, you are all telling me that he has cerebral palsy, where are the people who get together and talk about what they are doing? Where are the lay groups? And they said, well we don’t have one. So I said, well you are all telling me that he has pediatric CVI, where is that lay group? And they said, well, there is not one. So a third time, I said, where is the group for lay people who are dealing with tube feeding and transitioning to oral feedings, where are those parents? Oh, they said, well we don’t have one of those. Yes, there are many programs that would have been so nice, so helpful.

In the absence of support groups for grandparents helping to care for grandchildren with disabilities, Joy was told to rely on the doctors and other health care providers. But often, what she needed was help challenging those providers. In some other states, Zak would have been connected to proactive early intervention services as soon as the cerebral palsy developed, but in New Mexico, Joy says, there are few coordinated services until children reach age three and enter the public school system. For Joy, that was far too little, far too late. But in New Mexico you are told you have to trust the professionals. Well, how often can I see them? I have daily questions. Well the professionals are not available for that. Lay person support groups are not existing, or are unknown for referrals. That would have a huge help. What they did focus on was when he turns three, then he can go to school and then we can get him hooked up to services. The question is, what to do with him from age one to age three? The schools get money to take special needs kids. But they need money for these lay groups to be established. They only develop services where there is money.

The paucity of early interventions for very young children with disabilities in many areas is particularly worrisome given the importance of such therapies for encouraging development. Being forced to wait while grandchildren grow old enough to qualify for various programs is neither effective nor humane. Being unaware of available services because you are not able to locate a support group is utterly unacceptable and could be easily rectified.

Better Support Through Early Intervention and Special Education Since 1990, through IDEA, federal legislation has provided for early intervention for children from birth to age three, and then special education through preschools and schools. Diagnoses determine eligibility and the requirements vary by state. Moreover, as we demonstrated in Chapter 3, diagnosing can be efficient and proactive or it can be impeded by a wide range of factors including denial and discomfort, incorrect test results, or lack of access to health care. Early intervention programs, based on Individualized Family Service Plans (IFSP), are designed to support children’s

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developmental and academic success and to increase parent and grandparent involvement in the educational process. Available to young children with developmental delays and disabilities, early interventions include speech therapy, physical therapy, and other services needed by the child and family.15 The aim is for children to learn new skills, overcome challenges, and be more successful at school. Typically, at age three, children with disabilities shift to Individual Education Plans (IEP), which provide a wide range of therapies and supports through preschools and schools. Though all states provide such supports, eligibility and benefits vary markedly.16 In fact, implementation varies from town to town, and school district to school district. Budget cuts have decimated programs in poorer areas. Benefits are often mired in red tape and are underused, particularly by Blacks, Hispanics, lower income, and immigrants.17 Families for whom English is not the first language, and those with less income, education, flexible workplaces, and experience navigating red tape, may find it particularly challenging to gain eligibility for IDEA and to effectively participate in the development of IFSPs and IEPs. Several of the grandparents we interviewed talked about getting a lawyer as the only means to insure their grandchildren received early intervention and special education benefits to which they were entitled, by federal law. Our respondents have a lot of experience working with schools to obtain services for their grandchildren with disabilities. Some have much more positive experiences than others. Entering the systems of early intervention and special education can mean greater and easier exposure to a wider variety of therapeutically rich services. In some places, services are proactive, comprehensive, and responsive. It can also mean the beginning of endless fights and legal proceedings to arrange a set of services that will best fit each particularly child’s needs. In some places, services are meager and unresponsive. Families devote a great deal of time and energy to arranging schedules, therapies, and alternate schools in their attempts to be sure their grandchildren with disabilities’ needs are met. When services are good, they tend to be very good. Then, grandparents, and families in general, are grateful. Several grandparents told us that when children finally arrive at school age, life calms down because school provides a single integrated source for all of their therapies. Like many grandparents we talked with, Anna describes the hectic schedule of shuttling grandchildren with disabilities to preschool and then to a range of therapies, including speech, physical, and occupational. With age, at least in some school districts, many of the therapies are incorporated into the school day. This eases the schedule for families significantly. Anna cares for Jason, who has Down syndrome. Jason’s education began when he was just three weeks old with a variety of home therapies. Then, at age three years, he went to preschool where he was mainstreamed for two years. Anna says that did not go well. Now he is at a special public school for children with disabilities. He rides the bus to school by himself. He has every day since three years old. He likes this school. My daughter is pleased with the school. She was not happy with the school where he was mainstreamed. But now at this school for children with disabilities, the classes are very small, they swim once a week, he is good with school routine, he likes gym, and he likes sitting on the rug for story time.

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Before he enrolled at this special school for children with disabilities, he had numerous therapies outside of the school day, including PT, OT and speech therapy. But now his school provides all of those supports, so they do not have to drive to additional therapies. The school has a lot of support available there. They have given him this Velcro book and he can take a picture of what he wants and give it to you. He takes the picture of Sponge Bob off the book and gives it to you and that means he wants to watch Sponge Bob. These last six months he is much more responsive. I credit the school. He follows that routine well. And mostly at home too.

Whether therapies are integrated, and included, in free public education varies markedly from school district to school district. Children in poorly funded districts often must do without integrated therapies at school, forcing their parents and grandparents to either arrange and often pay for therapies outside of the school day, or forfeit therapy altogether. Integrating a full range of therapies into schools nation-wide would markedly ease the logistical and financial burdens for families raising children with disabilities. Some grandparents told us that while the schools were generally meeting their needs, adjustments were necessary. For example, Colleen’s family needed to press the school to bring in a behaviorist, and that made all the difference. Now that they have services arranged the way they need them, Collen is delighted with the school’s efforts and with her grandson’s progress. Colleen cares for Sam and Kit, who both have Down syndrome. She says it was hard when Sam started kindergarten because he had behavioral issues. But then her daughter was able to get a behaviorist on the team. The teachers had to follow the plan. If they did not, my daughter would calmly, nicely, remind them they had to follow the behavioral plan. That in itself is huge. His progress at school has been great. Her school had never had an educational consultant before and now they do, my daughter got it for Sam. I am so grateful for it. I can worry less.

Colleen is grateful that her grandson has a behaviorist but wishes everyone else’s did as well. Readily available behaviorists at schools would help smooth the transition to school for students with many different disabilities. The more these kids are with typical peers in social situations, the better off they are. I wish the daycare would put Kit in the room with two year-olds, but they keep her in the room for one year-olds. She should be in the age appropriate class. They did this to Sam, too, when he was little. Now Sam is in second grade and he is in general ed at least 40% of the day. And his teacher has a child with Down syndrome, so this year has been great for Sam. It has really been so great for him. How special for Sam that his teacher also has a child with Down syndrome.

Many grandparents complained about insufficient help for children with disabilities when it comes to schoolwork and homework. In fact, schoolwork, and homework in particular, generate considerable tension for many grandparents who are caring for their grandchildren with disabilities. If we were to point the finger at the guiltiest subject, it would most certainly be math. We heard numerous complaints about the seeming incoherence, lack of relevance, and insolvability of modern math.

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At a minimum, Candi feels, if the schools are going to assign that kind of math, they also need to assign tutors. Aly, who has ADHD and asthma, struggles mightily with all schoolwork and homework, and no subject is more frustrating than math. Candi cannot afford to pay for a tutor to help with Aly’s homework; as a custodial grandmother she is already absorbing so many of Aly’s expenses. Help with homework. We had to pay for tutors, but I could not afford so many tutors. So if the schools could provide help with the homework, that would be great for these kids with special needs. When you see a child and the parents struggling so hard, you have to provide some help. I don’t know where it would come from, the schools don’t have finances. But we really need extra help for homework.

When school budgets are cut, certain subjects such as art and music are at high risk of being cut. But, in addition to being pleasurable, music provides particularly effective therapy for all children and especially for those with disabilities. Marina cares for Carly, who has Williams syndrome and loves music. She likes music a lot. A lot of Williams kids do. She loves stuffed toys that play music, and she will bounce up and down. We had a party with a guitar player and the Williams kids loved it. They played and bounced and danced. They had children’s instruments for the children to accompany them. They were delighted.

Well aware of how powerful music is for her granddaughter, Marina is concerned about how available it will be when her daughter reaches school age. Whether music is routinely included in the school day varies markedly by school district; schools in poorer areas are often more likely to have eliminated music due to sharp budget cuts. Given that music can improve social, physical, and emotional well-being for all children, and perhaps especially for children with disabilities, widespread funding of music could help maximize integration and development for all children.18 Some grandparents are dissatisfied with the sorts of services available through their public schools and wish they could send their grandchildren with disabilities to private schools that might better cater to their needs. Sara’s parents have been reluctant to accept the autism diagnosis and slow to engage therapies and special education. Cindy wishes there were more affordable, comprehensive, school options for children with disabilities so that all of the needed early interventions could be provided through the school, regardless of the parental awareness or commitment. If I could afford private school I would pay for it for Sara. But it’s about $40,000 a year. It’s a shame that there is not more reasonable education. I wish there were more programs for the kids with special needs, to give them what they need. . . I wish that special ed was better, I wish the school was better, they are just doing what they have to. They do the minimum. She gets speech, OT, and PT but only one session per week individually. Otherwise it is all group therapy. How much can they really accomplish with eight or nine autistic kids in a single group. I would get her so much more involved, if we could find things that cost less. I wish there was a way to force parents to be more involved. If she had gotten help at one and onehalf years old, how much further along would she be?

Some grandparents are very dissatisfied with their public schools but do not have any other options. And budget cuts are making things worse. Several grandparents talked about how budget cuts have restricted the types of therapies and supports available for children with disabilities in public schools. Underfunded schools are

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hard pressed to provide enriched, integrated environments that promote development. Like most, Mary understands that school budgets are tight, but she is furious that her granddaughter is paying the price. Mary cares for Alice, who Williams syndrome, autism, and ADHD. She says cuts to school budgets have pinched services for students with disabilities and she fears she may be home schooling Alice in the future. The schools and teachers, they want to cut money for kids with special needs, and I am sure they cost a lot of money, but to sit there and not give a child what they need. Nobody gives a darn, They don’t take an interest in your child. It is only another kid that they have to take on. It gets really discouraging at least at the public school system. My daughter says my granddaughter is not going back there. Next thing I will probably be home schooling. I realize they have so many kids but they need to make allowances for these kids with special needs.

Several grandparents told us that the public schools were unable to meet their grandchildren’s needs and Mary is one of a very few who hired a lawyer to sue the district to pay for private education that did meet her granddaughter’s needs. They first enrolled Alice in public school but Mary’s daughter found it difficult to trust the school. She wanted to observe her daughter at school and at first they would not allow it. Once she won the chance to observe, she did not like what she saw. The public school would not let us in to the school, we could not observe. We could not see what Alice was doing. They had a no observation policy. We fought it. They finally let my daughter stand behind the door of a closet to watch, but what she saw was not right. Instead of working on her program, they were trying to incorporate Alice into the class filled with typical kids. Alice is all over the place. What my daughter saw was the aid holding my granddaughter down as the class talked about dental health, rather than working on her program.

They transferred Alice to a private school that emphasizes assisting children with disabilities. Mary and her husband began paying the tuition, then hired an attorney to help them demonstrate that the public school was not meeting Alice’s needs and force the public school to pay for part of the private tuition. Mary is adamant that schools should be required to allow parental observation for the safety and welfare of children with disabilities. A few grandparents fear that other grandparents don’t even know what they are missing. Some grandparents are aware that navigating the complex set of systems that provide services for children with disabilities is simply too much for many families. Paul cares for Alex, who has Down syndrome. He has decades of experience as a disability rights activist and knows exactly what states are required to provide and how to obtain the benefits. It often requires a lawyer. But he worries that many families, particularly those who are poor and have less education, may not be aware and may not be able to muddle through the red tape. For example, he says that state law guarantees children with disabilities certain therapies and treatments through schools and if the public schools cannot provide them, students can attend private schools. His grandson does. But the process is complex, expensive, and requires legal expertise that few possess.

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New York State has laws that mandate these programs. . .If it is not provided in a community they can go to a school that provides this kind of help. . .That’s pretty intimidating. The parents have to pay that upfront and then sue the state of NY for reimbursement. Every year. In addition to attorney’s fees. The process of every child with Down syndrome has to go through. Most people cannot access to this. The prejudices of the system. Even wealthy people can’t navigate the system. You risk losing. . .Those who are poor, they don’t know about resources. They don’t have the communication with those resources. As a result their child suffers.

In contrast to grandparents who are thinking of leaving the schools, some grandparents are worried that the schools will not let them stay. Indeed, some are focused on behavioral issues and wondering why there are not more school-related options for grandchildren with violent outbursts. It’s not easy caring for a grandchild who tends to act out violently, but Chris says the task becomes even more challenging when he keeps being banned from programs. Chris cares for Wendy, who has anxiety disorder and has autism like symptoms, and Mark, who has ADHD and Oppositional Defiant Disorder. Mark tends to have violent outbursts and has been expelled from several programs. Chris feels there should be programs for Mark that can accommodate his violence, provide him with the structure he needs, and provide his mother with the respite she needs. Moreover she feels counseling should be more readily available both for children with disabilities and their families. We need some kinds of programs for kids like Mark, for after school or Saturday afternoons, more programs. My daughter is constantly on edge that he will get kicked out today, and then where do we go next, there are so few programs. Honestly, she is not cut out for staying home with the kids; that would be a disaster. When she is home with them she looks for ways to get out, or come over here. Not everyone is cut out for kids, especially kids with a disability. Mark targets his mother, something awful. He has hurt her many times, we have had to intervene, restrain him, to get him to stop. He is getting too big and she is not the largest person in the world. There should be a system to make it easier to find a counselor. One of the hardest things for parents is that they feel judged all the time. I am once removed. But they feel judged all the time. People do not understand how hard this is unless they have lived it.

Enriching Social Programs There are not many social programs for children with disabilities and grandparents are fervent in their wishes that more would be available. Many had no access to special social events, even accessible playgrounds, for their grandchildren. And those who did often found that eligibility was limited; they were left wishing for greater access for all. Several grandparents sang the praises of GiGi’s Playhouse, a non-profit charity. For those with grandchildren diagnosed with Down syndrome, who happen to be lucky enough to live near one, GiGi’s Playhouse provides a vast array of social, academic, and supportive activities. It offers a wonderful way for children with Down syndrome to be together. The only complaints we heard about GiGi’s Playhouse is that there are not enough of them and they are only for families with

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this particular diagnosis. Currently there are 38 GiGI’s Playhouses worldwide, and they hope to have 100 in place by 2021.19 Tessa is an enormous fan of GiGi’s Playhouse but the nearest one is two hours away. Tessa cares for Leila and one of their favorite places to go is GiGi’s Playhouse and they wish there were a lot more of them. They have visited GiGi’s in various places and fantasize about having one nearby. GiGi’s Playhouse, it’s just for kids with Down, from birth to adulthood. They have all kinds of wonderful things they do. The parents get together and they have classes for the parents. They have literacy for the kids, dance classes, you name it, they have it. If they had one here, that would be great. Two other kids in her class have Downs and that would be awesome if they had GiGi’s here. The support is just incredible. They have dances for the teens, all kinds of field trips. They pick apples. Amazing!

Several grandparents live in areas where gymnastics centers offer free or low-cost special, or integrated, programs for children with disabilities. The programs have different names in different parts of the country, including My Gym and Tiny Tumblers.20 Where they exist, these programs are enormously popular. Grandparents enjoy taking children to the programs and describe visible improvements in mobility, muscle tone, and social interaction. However, nearly all such programs had eligibility limits; some grandchildren became ineligible when they could walk, others on a certain birthday. Those who benefited from the programs wished they had more locations, longer hours, and looser eligibility rules. For example, Betty cares for Carl, who has Williams syndrome. Carl regularly attended a program called My Gym, but has now grown too old. She wishes these programs existed for children of all ages. She is unaware of any programs for children his current age. One thing he did do which was great is he went to a gym, My Gym, it is for all kids. But they work with kids with disabilities, too. It is like a gym class but it teaches patience and turn taking and direction following, in addition to using the apparatus, balance, jumping, climbing, and using their bodies in an efficient way. He loved it. And he became much less awkward. He is not doing it so much now that he is in school and getting too old for the program. He does occasionally now but he is getting old enough we need to find another program.

Similarly Marina is an ardent fan of her local free gymnastics program but wishes it ran until children were significantly older. Carly is permitted to participate in a free, weekly, baby gymnastics program until she is able to walk. Half way to her third birthday she is just beginning to take her first steps and about to become ineligible. Marina wishes that there were more programs, on more days of the week, for all ages of children with disabilities. More programs like the baby gymnastics would be so good. More programs where you could bring the child in and let them have fun. They are constantly being poked and prodded at the doctor. They need places they can go to be themselves and just enjoy. I don’t mind paying for them but there are not always programs on the days I have her that I can take her to. . . . I wish there were more programs like baby gymnastics. You don’t’ have to sign up. You just go. And it is free till they walk. And so much fun.

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Now that Carly is outgrowing the gymnastics program, Marina was putting more emphasis on a special story time that includes riding the carousel. But it was cancelled. Marina fears she is not quite ready for story time at the library. Just as Carly is able to do more activities, there seem to be fewer available for her to do. I used to take her the mall for story time and reading books and riding the carousel. But they cancelled that. I have not taken her to the library programs yet – I am not sure if she will cry and carry on and ruin it for everyone. But soon. She is getting more stable and has a longer attention span, and as she is growing up she can go to more programs.

A few grandparents talk about the importance of attending church with their grandchildren, but find themselves put off by the lack of accommodation at churches. Some quit attending church either because people made comments, or there were no provisions for children with disabilities. Others were still attending church but were struggling to do so. For example, Linda likes to attend church with George, and place him in the nursery during services, but then she has to listen to the daycare providers’ complaints about his behavior. She wonders if a special needs minister might help make her church more accommodative. She says her daughter has been working with the church to hire a special needs minister who would help educate the congregation and make it easier for families with children with disabilities to attend church more readily. Church is an important part of life for Linda and her extended family, but leaving George in the church nursery can lead to quite a bit of anxiety. My daughter has heard comments said about his behavior, even at church. When you pick them up after church at the nursery, you don’t want to hear all the negatives. I mean, no one is bleeding. Sometimes it is a bit too much information. She wonders if she can go to church and then afterward go to the nursery, and it will be wonderful. Or will there be negative reports. She has a lot of anxiety.

Several grandparents call for more, and better, accessible parks in their neighborhoods. The importance of parks for all children, and especially for those with disabilities, can hardly be overstated.21 They provide much needed opportunities for physical exercise, fresh air, and social interaction. Improving muscle tone and burning off excess energy are important for all children and may be particularly important for some children with disabilities. But even those that are ADA compliant are often not fully accessible. One study found that the majority of the 149 caregivers for children with disabilities that they interviewed felt that their child could not participate fully because the local playgrounds were not appropriate for their child.22 One particularly noteworthy exception, which is fully accessible, is the Magical Bridge Playground, located in Palo Alto, California.23 But many of the grandparents we interviewed have no accessible parks in their areas or find that the accessible parks are minimalistic and not well developed. Several grandparents talk about travelling long distances to play at playgrounds that are appropriate for their grandchildren with disabilities. Doris is advocating for more convenient, accessible parks, but she is also advocating for a much broader set of social activities for kids

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with disabilities. Given that John has numerous disabilities, she wishes that there were more, and better equipped, handicap accessible parks. There’s all kinds of playgrounds and city parks. And one of them should be, one of them. We shouldn’t have to travel out of state to go to a park that is handicap accessible. . . We have some that have handicap accessible swings, but there might be one, one swing. There needs to be more activities for disabled children.

Determined to find more social activities children with disabilities, Doris took matters in to her own hands. She and her husband organized a Halloween party with costumes, cookies, games, tattoo stations, photo booths, and dancing. The children loved it. Local businesses helped fund and promote the event. We did a Halloween party for special needs children. It was amazing. It was awesome. We had a huge turnout. . .Everyone came in costumes, I had a photo station. So, all these kids got photos in the photo station. Disabled children are still children. And they still like to play. And they still like to swing. And they still like to be outside. And they still like to be with other kids. And, they still like to dance, even if it’s in a wheelchair. They don’t wanna act like they are dying, they wanna act like they’re living. Even if they are dying, they don’t want to act like it, they’re kids!

She also wants a safe house. Aware that children with disabilities are more likely to be bullied, she wants to create a space for social activities that is free of any bullying.24 She proposes a large warehouse type of building that can hold an endless array of events and activities for children with disabilities. A safe place where people with disabilities are never mocked. Within those walls they are safe and not made fun of. And, they belong here and it’s part of their home. And they can do and say, and be whoever they want within those four walls because it’s safe there. And they can hold dances and they can play games. And, they can have parties and they can have events and they can have fundraisers so that they can buy equipment for maybe a playground, and they can own that equipment because they had the fundraisers to raise that money. And they can feel good about themselves. That’s my perfect world!

Similarly, Mia was unhappy about the lack of social programs for children with disabilities and began to create some herself. Mia instituted cooking classes for children with Down syndrome. Additionally, she and her husband volunteer at the special programs for children, like their granddaughter Cally, who have Down syndrome. She is grateful that so many of the local parks are adapted for children with disabilities. Our daughter-in-law was the program director for the Down syndrome center here locally, and they offer a lot. I did a few cooking camps for older kids with Down syndrome, ages 16-25. We met four Saturdays in a row for two hours. I taught cooking to those kids so they could become a little more self-sufficient. Our town has beautiful parks and playgrounds and a lot are adapted for handicapped. The Down syndrome center holds a summer camp for six weeks, day camp. I have volunteered at those too, and Cally goes to those. And they have a three night overnight camp, run by Down syndrome organization, Cally goes. And parents are not allowed to be the counselors at the camp.

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Comprehensive Medical and Respite Care Given that children with disabilities often have complicating medical issues, it is imperative that they have access to high quality, comprehensive, responsive health care. Many do not. Grandparents caring for children with disabilities have a lot of exposure to, and experience with, health care providers and systems. Some have much more positive experiences than others. Some grandparents described doctor’s offices that required long waits for rushed examinations, the shortage of high quality in-home nursing care, lack of insurance coverage of needed care, and the dearth of affordable, high quality skilled respite care. Some grandparents feel that health care providers need to be more sensitive to just how difficult it can be to bring a child with disabilities in for a visit. Long wait times followed by rushed visits are more than some can bear. Mary finds doctor visits particularly challenging because the wait times are long and then the doctor is always hurrying. She says they have to wait for the room, then the nurse, then the doctor. She resents how they ask her to turn Alice around for a test but they do not allow her enough time to get Alice turned. She says she asks for a minute but they say they do not have time. Alice now weighs 40 pounds and Mary has developed knee and back problems trying to move her about. Then the doctor has five minutes allotted to you, and she is fighting, does not want to be touched.

Some grandparents focused on the need for better at-home nursing care options. There is a national shortage of nurses and not many services provide high quality, affordable, in-home nursing care. But Doris’s grandson has to have assistance with his feeding tube, ventilator, tracheotomy, and catheter. They have faced a revolving door of nurses who are not sufficiently trained, not on time, and not awake on the job. She has many ideas about improving services for children with disabilities, but foremost she wants better trained nurses. While John has a good nurse now, it took years to find her and they worry what they will do if she leaves. I think the nursing needs to be changed. I think that they need good, qualified nurses that are not LPNs but RNs who actually have the experience of changing trachs, of knowing life support. Of knowing how to resuscitate if needed. Not falling asleep on the job. Nursing is a nightmare. A total nightmare.

For some grandparents the most difficult aspect of obtaining good medical care is inadequate insurance coverage. Kelly is in a nearly constant battle to get approval for coverage of medically or therapeutically necessary treatments. Most recently, she tried and failed to obtain insurance coverage for expensive shoe inserts for Maya, who has cerebral palsy. Because so many of Maya’s medical expenses are not covered by insurance, Kelly and her husband contribute financially to help Maya’s parents with out-of-pocket expenses. I think there is something wrong. Insurance should cover for most of these things. Maya got rid of her braces now she needs to get inserts for her shoes. We have to pay for it because they say it’s cosmetic. Insurance refused to pay. They will pay for the therapy but they will

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not pay for the insert for the shoes. It is stupid we just have to pay $200. I have great insurance because I have worked in the school district and I have all enough for it to cover everything. I don’t even need to use my Medicare. My daughter had to pay $700 for an MRI because the insurance wouldn’t pay for it last year. That is ridiculous. She needed it; we had to pay for it.

Some grandparents emphasized the need for good quality, affordable or free, respite care. Nationwide there is a shortage of respite care workers who care for children with disabilities while parents and grandparents take a much-needed break. But Anna has a simpler solution in mind. If only there were more after school and weekend programs and play groups for Jason, who has Down syndrome, she would be able to get a bit of a rest. While she feels that the public school is providing good supports for Jason during the school day, she does not feel there are enough supports outside of school hours. I wish there were programs for respite care. There is an after school program at his school but it is full, hard to get into. We need more after school programs, I had respite programs for me when I cared for my aunt with Alzheimer’s. Something like that would help a lot. Not overnight even, just a few hours after school or on the weekend. A play group he could go to. There is not anything available in that area. That type of resource would help sometimes. Most programs require the parent to still be there involved. We need programs where the parents don’t have to be a part of it, so they could go for a couple of hours and give the parent respite.

Similarly, Bree wishes there were more respite services available for her and her adult children. She says that caring for their four children, including Ava who has Down syndrome, has left her daughter and son-in-law exhausted and tense. She wishes that respite care, where Ava could stay with others and her parents had a break, was more readily available and that her daughter would make use of it more often. She imagines some overnight and weekend care. There is an organization that is supposed to give them respite hours but somehow they don’t ever get to use it much. I am not sure why. She has friends that get respite. I am not sure why she doesn’t. The child goes and stays with the people, and the family gets respite, but Karen does not use it, not sure why.

Stable Access to Social Welfare Programs The expenses involved in making sure that grandchildren with disabilities receive the care they need can be astronomic. Families with comprehensive health insurance, or tremendous resources, and less severe medical issues, may be able to manage these costs. But families with fewer resources, little or no health insurance coverage, and more severe diagnoses can be overwhelmed. They need assistance covering household expenses, including medical care. The safety net for children with disabilities in the US consists primarily of four poverty-based programs: SSI, Medicaid, SNAP, and TANF. Eligibility rules and benefit structures for these programs vary dramatically by geographical location. As demonstrated in Chapter 2, some states opt to expand coverage and augment benefits while other states provide

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the least amount of coverage and benefits that the federal government will allow.25 Families living in states with meager benefits may find it hard to qualify, obtain, and sustain such benefits over time. Moreover, many families are unaware of benefits or unable to correctly complete the paperwork, particularly if there are changes in income, assets, household composition, or diagnoses.26 Grandparent-headed households may have additional problems. They have disproportionately higher rates of poverty, especially when headed by women or Blacks or Hispanics.27 Moreover, when grandparents are defacto, rather than legal guardians, they may have difficulties qualifying for any programs whatsoever.28

SSI The proportion of children relying on SSI has risen steadily since the program’s inception. Fully 86% of those who receive SSI have disabilities; 15% of SSI recipients are children under age 18.29 But benefits remain difficult to obtain. In fact, only 25% of those who are eligible actually receive SSI.30 Some families have difficulty proving that their children have severe enough functional limitations. Other families have difficulty qualifying for the asset tests, $2000 for a single parent and $3000 for a couple, which have been frozen since 1989. Others families have difficulty managing the endless red tape. In contrast to Social Security, which can be enrolled fairly easily on line, SSI applicants are often required to go to their local office with paperwork that includes birth certificates, mortgage or lease payment receipts, bank books, car registrations, and insurance policies.31 Once qualified, many families are surprised by the meager size of benefits. Families are often surprised again when they face redetermination: adjustments to their benefits due to any changes in income, assets, diagnoses, marital status, living arrangements, or age of recipient.32 SSI would be made substantially more responsive for the families we interviewed by loosening income limits and allowing the asset limit, which has been frozen since 1989, to rise with inflation. Had it done so, the limits would be nearly $8000 for an individual and $12,000 for a couple. SSI could also be improved by minimizing red tape. In our interviews many who rely on SSI complained about difficulties navigating the bureaucratic red tape and sporadic, and unexplained, changes to their monthly benefit.33 Finally, SSI could be improved if basic benefits were increased such that they are equal to the federal poverty line. As they turn 18, the grandchildren in this book will likely shift from SSI to SSDI and Medicare. Social Security provides benefits to adults who are disabled but gaining access to the benefits can be onerous. Eligibility is determined by strict medical and vocation tests that must show that applicants cannot work.34 Benefits may be delayed for months, even years. The hurdles are so cumbersome that many are forced to hire lawyers. Those with less income and education are both more

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likely to need these benefits and less likely to be able to successfully navigate the application process and actually receive benefits.

Medicaid Medicaid has expanded dramatically since its inception in 1965, particularly since the expansion of CHIP. It now covers 20% of the US population, and one-fifth of all health care expenses. Currently, 43% of Medicaid enrollees are children, and Medicaid covers 83% of children in poverty.35 Eligibility rules have changed dramatically over time and vary widely by states.36 Through a multitude of pathways, Medicaid has expanded coverage in recent decades and increasingly large shares of children with disabilities now receive medical care through Medicaid. Given the importance of early childhood interventions for children with disabilities, Medicaid’s Early Periodic Screening Diagnosis and Treatment coverage is pivotal for children with disabilities.37 When the program is working well, benefits are shaped for each child’s diagnoses and then change as diagnoses and needs change.38 Red tape for Medicaid is substantial and roughly 75% of those who are eligible receive benefits.39 The process of applying varies markedly by state. In New York, for example, the application packet is 17 pages long. Moreover, “it includes document requirements such as a written statement from a daycare provider, as well as cancelled checks to documents daycare costs; four weeks of consecutive paycheck stubs; a letter from employer that is dated and signed documenting employment; income tax returns; if receiving child support, a signed letter from the court, a letter from the person providing support, and a child support/alimony check stub; and bank statements, life insurance policies, deed or appraisal for real estate, and an estimate from a dealer on the blue book value of one’s car.”40 Currently, many policy-makers are hoping to reduce Medicaid eligibility, coverage, and expenditures through a variety of mechanisms including work requirements. Polls show that few Americans support such proposals.41 Medicaid would be substantially more responsive to the families we interviewed if state variations were reduced, income and asset tests were relaxed and indexed to inflation, and reimbursements to providers were increased so that more providers would accept Medicaid patients. Grandparents noted the importance of Medicaid for grandchildren with disabilities, and the hardships caused by lapses in Medicaid coverage. They were frustrated by red tape and weary of devoting so much time and energy to maintain coverage, particularly when their efforts were not successful.

SNAP Food insecurity is particularly problematic for families who have children with disabilities; they are more likely to report food insecurity and more likely to rely

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on SNAP.42 Generally, SNAP is available to all who are at or below 130% of the federal poverty line if they have assets below $2250, but the income and asset tests are more lenient for families who have children with disabilities. SNAP boasts one of the highest take up rates for poverty-based programs: roughly 83% of those eligible in 2015 received benefits.43 But the grandparents we interviewed report that the benefits are simply too small to substantially improve the quality of their diets. Many noted the importance of SNAP to their household economics but noted that the benefits were often interrupted or reduced for reasons they did not understand. Grandparents told us they devoted considerable time to red tape surrounding this and other social programs. SNAP would be substantially more responsive to the families we interviewed if income and asset tests were less strict, administrative burden was minimized, and benefits were more generous.

TANF TANF provides cash assistance to the poor, but in fact only 23% of families in poverty receive TANF.44 TANF is funded through a block grant that permits wide state variation and studies show that eligibility rules are stricter, and benefits lower, in states with higher proportions of Blacks.45 States may impose work requirements, more stringent application requirements, or strict time limits on TANF.46 Enrollees may be censored, which generally involves losing benefits, for a multitude of reasons ranging from not searching for work to being late for a TANF appointment. Critics argue that TANF could be improved if state variations were reduced, if income and asset tests were relaxed, if benefits were increased, and if administrative burdens were reduced.47 It is important to note that not one of the 50 grandparents we interviewed reported that their grandchildren’s families were receiving TANF.

Coping with Administrative Burden Many grandparents we interviewed talked about the endless paperwork involved in applying for, and reapplying for such programs. Often within months of finally receiving benefits, their benefits were reduced or eliminated for no apparent reason. Sometimes a slight change in the family income would suddenly render them ineligible. Other times, a change in the legal status, from legal guardian to adoption for example, would render them ineligible. Their frustrations with the red tape, the meagerness, and the rules associated with these programs was substantial. Jill wishes it was much easier to apply for, obtain, and retain various social supports. She feels the rules about income and eligibility for programs are far too strict. She is most frustrated with Medicaid and SSI. Her granddaughter Minnie, just three months old, is diagnosed with Down syndrome, a heart defect, and an intestinal disorder. However, her daughter and son-in-law earn $30 a month too much to qualify for

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Medicaid and they now have a $580,000 medical bill for Minnie’s care, a bill that is growing almost daily. None of them have the resources to cover such an enormous bill; she is dismayed they are not receiving some assistance for her granddaughter’s considerable medical needs. Because my son in law makes $30 too much a month, she will not qualify for supportive Medicaid or anything really as far as the state goes. So their medical bills, they’ve got a $580,000 medical bill that’s now going to be the responsibility of us, both of us, to try and figure out how to pay. . .even though it’s a disability, it’s not enough a disability for his income to allow her the extra medical coverage to make up the difference for what insurance doesn’t cover. $580,000, right now, and growing. Yeah, we don’t even have the latest hospital visit bill back yet. . .and, that was only one hospital. She was in two when she was born, so.

As she looks ahead, she is concerned about how Minnie will fare once she becomes an adult. She is frustrated that SSI recipients are not permitted to have substantial earnings. Yet her hope for Minnie is that she may be able to find work and some small sense of independence. Minnie will not be permitted to earn money lest she be deemed ineligible for benefits. She would like a chance to tell policy makers in DC the problems with these policies. Really, the only thing that I think needs to change and that I’m trying to figure out how to get involved in is changing the way that the government looks at disability in general. Somebodies got to start advocating for these kids. You know, the fact that they can’t earn money is ridiculous and outdated. I mean, I guess that would be a bigger thing, is just to become a huge advocate for them now. I’m having to hide money for her in a hidden way so they can’t find it and use it as income. It’s ridiculous that I can’t, you know, provide for her now in case I’m not here when she’s 30. So, I’d love to go stand on the court house and scream about that one. Anytime. I’m close enough to DC!

Many grandparents whose grandchildren are receiving SSI expressed frustrations with the meagerness, and apparent randomness, of the benefits. Given almost constant talk in Washington DC of restricting, rather than expanding, social welfare programs, they are understandably worried they might lose even this meager form of support. Andy and his mother live with Connie and she cares for him about 50 hours a week. Andy receives $125 a month from SSI and Medicaid. Connie is paid a small stipend for caring for Andy. And her daughter has a full-time job. All said, they have less than $60,000 a year to cover all of their expenses. She says it is nowhere near enough. Connie and her daughter have fought long and hard to obtain more SSI benefits but in fact their benefits keep being reduced. She wishes SSI benefits were easier to obtain and greater in size. I don’t want to see any cuts at all. It’s just, people are barely getting by now and for them to cut even more for people that depend on that, my daughter being one. Then what are they going to do? They’re going to have all these people needing this stuff and not being able to get it and no place to get it from. So, it’s kind of scary. I never paid much attention until it happened to us. . .You have to be desolate with no income at all before they really help you. And, that’s the sad part. You would think you want someone working, but because they say her income is too high. I’d like to see, what’s poor then? That’s how I feel about that. She fought with them, and I fought with them, and I’m not fighting any more. If they cut it out, they cut it off, fine. What can you do with $25 a week? You can’t even pay diapers.

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Some grandparents have been battling bureaucratic red tape for decades, with little success. Hanna cares for her 19 year-old grandson Danny, who has autism. Hanna talks about the struggles that they go through to gain access to different benefits. We need more social programs. We didn’t have anything at the time. I think now they are more aware of autism than they were when he was born.

Throughout most of his childhood, Hanna’s daughter had to pay out-of-pocket for many of Danny’s social services. She didn’t get anything. She paid for everything. Even his tuition. . .we didn’t get any financial aid.

Hanna feels that disability benefits of all types should be more readily available, easier to obtain, and focused on early intervention. Her grandson missed out on most early intervention programs because he was not able to qualify for benefits in time. Moreover, she feels that respite must be easier to secure. I think the government should have made sure that teachers and doctors. . .help much earlier. My daughter went to hell navigating the system to get him Medicaid. He didn’t get Medicaid until, I think, a couple of years ago. He was covered under his father’s family insurance. But to get assistance, like mentors to help. Because she couldn’t be around him 24 hours per day. This is where we come in. The family comes in.

Even those who are accomplished at navigating programs like SSI and Medicaid worry about others with less expertise. Carole is very active in many support groups and organizations for people on the autism spectrum and their provider. She has decades of experience navigating the cumbersome federal and state programs for people with disabilities, and she has been successful obtaining benefits. But she is concerned about those who, often poor, have little idea how to handle the red tape. And she is even more worried now, given talk in Washington DC about limiting eligibility for benefits. We have had great luck in our community. Because I was in that field, I know a lot of services for people with disabilities, including international ones. I have a lot of professional connections. These types of things help. I have had a lot of support, including treatment. The entire political attitude toward social programming this time is not good. They really don’t care about poor people especially in the federal level. It goes back to old Protestantism. ‘If you do well, god is smiling.’

Some are able to obtain Medicaid but are never able to secure any financial benefits. Donna was aware of several benefits she felt she was qualified for but was never able to obtain. Moreover, when she challenged their decisions about her eligibility, she felt they retaliated by failing her for her home visit. Donna cares for her two adopted grandchildren, Sally and Tony. With the kids we are raising, we are the providers as we adopted them. We have never gotten a dime for these kids. Even when they were in CPS custody, the state never gave us a dime for anything. What we had was Medicaid; it was our only benefit. We made too much money so they were giving us nothing. I fought them on that because daycare vouchers, ECI vouchers were not contingent upon income so that was very difficult. When I did that, they failed my home study saying I just wanted to bill the system. I’m a licensed master’s social worker so I understand what they can and can’t do; CPS was all about power and control.

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Custodial grandparents are particularly weary of how few benefits they receive. Kim cares for Izzy and Matt, both of whom are diagnosed with ADHD. There are few to no services in their area. They do not receive any kind of assistance; no Medicaid, no SSI, no welfare supports. She and her husband have to pay for everything. By far her biggest wish is that custodial grandparents would receive the same benefits that foster parents receive. Though the benefits are small, they would make all the difference for this cash-strapped family. It would be most helpful if grandparents raising grandchildren got what foster parents got. Foster parents get programs, and cash benefits, and educational programs for the foster parents and the foster kids. They get reduced tickets to amusement parks or movies, they get respite care providers, they get on the Christmas list. If we were in that group, it would give a great help to us. Millions of us are doing this, raising our grandkids. We are saving the government billions every year because we take these kids out of the foster system. But then when we take them, they shut off all the money, no benefits, no reduced priced tickets, no classes. We are invisible. We need community, we need to be recognized, and we need to get the same benefits that foster parents and kids get.

Kim advocates for the expansion of foster benefits to custodial grandparents whenever she gets the chance and in part it was why she agreed to do the interview. She hoped that our book would provide a platform for her message. She feels that grandparents raising grandchildren in the midst of the opioid crisis need a great deal more help than they are receiving, from churches, scholars, policy makers, and other families. This opioid crisis is coming out of all income levels and we are all being overlooked. Even the churches are not stepping up to help the grandparents raising grandkids. But we could use some help. We need the voices, and books, and legislation. We need recognized, supported, and encouraged. We need the grandkids to be assimilated so that they don’t feel set apart. It’s a whole new family dynamic generated out of crisis, not a planned event. When the kids come into our lives it is not something grandparents are prepared for. It’s a call in the middle of the night, I am bringing the kids over and they are not leaving. There is no preparing for it. We need a new tool kit.

Similarly Jacki feels that custodial grandparents are not treated fairly, particularly when they adopt their grandchildren. Often grandparents are encouraged to adopt, in part so that their adult children cannot try to reclaim their children when, for example, they leave rehab or prison. While adopting has some benefits it often comes at great costs. For several of our grandparents, including Jacki, adopting their grandchildren with disabilities meant that the grandchildren lost coverage under Medicaid. Many also lost food stamps, child care credits, tuition allowances, and counseling benefits. I get no governmental help for Mona. I think it’s really sad that when we took the steps and money to adopt her, she lost her Medicaid. We never got food stamps, we never got childcare credit, we never got social or counseling credit other than through Medicaid. She did see a counselor for a while when she had Medicaid.

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Jacki laments the scarcity of social services to help grandparents who are raising grandkids with disabilities, given that so many grandparents have limited or fixed sources of income and are merely surviving on their pension and saving. We’re getting ready to go through some orthodontic stuff and it’s going to be about $5000 we have to cover. We have had to take out a credit card just for that. I think when children are adopted by grandparents who are receiving Social Security, they should be qualified to get Medicaid.

The expenses of caring for grandchildren with disabilities can be considerable, particularly if grandparents adhere to a proactive therapeutic model aimed at maximizing development and independence. It’s one thing to take care of grandchildren hour after hour, but to also pay for all of their bills can be financially overwhelming. Most of the grandparents we interviewed need easier access to larger and more reliable social welfare benefits. Nearly all of the grandparents we interviewed needed more support—social, medical, and financial—than they were getting.

How Place and Policy Matter Place and policy matter a great deal when trying to access proactive, comprehensive, responsive services for grandchildren with disabilities. Grandparents are often caught off guard by the birth, and sometimes the sudden custody, of a grandchild with disabilities. In-person and on-line support groups would help them tap into whatever resources are available in their area much more quickly. They would also facilitate formation of friendships with others who know what they are going through, and who can provide a wealth of advice gleaned from a wealth of experience. Grandparents made it clear that schools are both the solution and the problem. They have so much potential to facilitate early intervention, proactive treatments, and integrated care; but they are rarely sufficiently funded, or committed, to accomplish such tasks. Hiring a lawyer to force schools to accommodate should not be necessary; hard-won federal legislations must be fully enforced. The dearth of social activities is inexplicable. Children with disabilities are, after all, children and they want to have fun. With the exception of GiGi’s Playhouses, some free gymnastics programs, and a few particularly lovely accessible parks, grandparents told us there was not much available. Grandparents sometimes take matters into their own hands, offering cooking classes and Halloween dances, but for the most part they plead for opportunities for their grandchildren to play, sing, dance, and be with other children in a setting where no one will mock them for their disabilities. Health care providers are also part of the solution and the problem. Grandparents told us of efficient and effective medical care and of inefficient and ineffective medical care. It seems safe to say that many providers need additional training in, and empathy for, caring for children with disabilities. A child in mid-tantrum cannot be turned over on a dime. Navigating the labyrinth of federal and state welfare programs such as SSI, Medicaid, and SNAP is not easily accomplished. Grandparents told us heartbreaking

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stories about loss of cash benefits and loss of health care coverage; time and energy wasted trying to manage access to those programs; grandchildren doing without needed therapeutic treatments; and parents and grandparents accumulating massive debts. Instead of providing only poverty-based benefits for children with disabilities, the federal government could provide federal entitlements that would be more easily accessible and provide more stable and generous coverage. But if only povertybased options are available, then we must simplify the red tape. Far from trying to simplify the red tape and assure families consistent comprehensive coverage, however, Congress is often preoccupied with further reducing and restricting these programs. For example, four states have now established work requirements for some Medicaid recipients.48 Childhood disability rates are increasing, but neither the federal government nor employers have kept pace by providing benefits that help families respond. Given the dearth of childcare options, many families turn to grandparents. Every day in the US, millions of grandparents provide a wide range of care for grandchildren with disabilities. Whether they live hours away, nearby, or in the same house, they assist with everything including feeding, bathing, dressing, toileting, transportation, and schoolwork. All of the grandparents we interviewed provide care, ranging from medications, therapies, and doctor visits to feeding tubes, suctioning, and catheters. Some have the time and means for fun trips to the park, zoo, or campground; many do not. Our analysis of 50 interviews with grandparents caring for children with disabilities suggests their experiences vary substantially. They talk about love, laughter, and close bonds even as they struggle to obtain, and come to terms with, diagnoses of disabilities. For some the care work is minimal and optional. For others the care work is regular and intense, performed for many hours and years, and the only sustainable option for the family. For those whose adult children struggle with opioid and other drug addictions, or mental health problems, becoming custodial grandparents and providing around-the-clock care is the only option other than relinquishing grandchildren to foster care. Many also provide care for other family members, including spouses, parents, and adult children in a never-ending cycle of care work. Most expect to continue providing care for their grandchildren with disabilities as long as they are able. Care work reshapes their financial, social, emotional, and physical wellbeing. Those with sufficient resources are more readily able to absorb the impact, those with fewer resources are not. Grandparents who are providing the most care for grandchildren with disabilities, and who have the fewest resources, are more likely to deplete their savings and incur new debts, reduce or end employment, restrict social lives, and forego travel plans. They are also more likely to experience anxiety and emotional distress, have disabilities of their own, and neglect their physical wellbeing through lack of exercise, improper diets, and delayed medical and dental care. Nearly all of the grandparents we interviewed need more social, medical, and financial support than they are receiving. They need a social welfare state that will provide a safety net for them as they provide one for their grandchildren with disabilities.

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Notes 1. Elder (1974). 2. Crystal et al. (2017), Harrington Meyer (2014), Ferraro and Shippee (2009), Elder (2006), Baca Zinn and Dill (2005), England (2005), Harrington Meyer (2000) and Elder (1974). 3. Mehta and Myrskylä (2017), Harrington Meyer (2014), Folbre (2012), Moen and Spencer (2006), Pavalko and Henderson (2006), Folbre (2004), Harington Meyer (2000) and Pavalko and Woodbury (2000). 4. Mehta and Myrskylä (2017), Harrington Meyer (2014) and Folbre (2012). 5. Casper et al. (2016), Suitor et al. (2016) and Cherlin (2010). 6. Polenick et al. (2017), Fingerman et al. (2015), Folbre (2012), Baker et al. (2008), Harrington Meyer and Herd (2007), Pavalko and Henderson (2006), Casper and Bianchi (2001) and Arber and Ginn (1995). 7. Folbre (2012), Glenn (2012), Krantz-Kent (2009), NACCRRA (2008), Bianchi et al. (2006) and Chesley and Moen (2006). 8. Huo et al. (2018), Harrington Meyer (2014), Luo et al. (2012), Igel and Szydik (2011), Baker et al. (2008), Hughes et al. (2007), Phillipson (2015) and Estes (2001). 9. Mehta and Myrskylä (2017), Harrington Meyer (2014) and Folbre (2012). 10. Houtrow et al. (2014), Hogan (2012), Seligman and Darling (2017) and Park et al. (2016). 11. Kropf and Kolomer (2004):74. 12. Goyer (2018). 13. Findler (2014). 14. Brown et al. (2017) and Noy and Findler (2016). 15. Centers for Disease Control and Prevention (2018e). 16. Stuart (2018), US Department of Education (2018) and NECTAC (2011). 17. Morgan et al. (2015), Feinberg et al. (2011), NECTAC (2011) and Araujo (2009). 18. Mendelson et al. (2016). 19. GiG’s Playhouse (2016). 20. My Gym, Wichita KS https://www.mygym.com/wichita; Tiny Tumblers http://www. tinytumblersonline.com/index.html 21. Stanton-Chapman and Schmidt (2017). 22. Stanton-Chapman and Schmidt (2017). 23. https://www.cityparksalliance.org/why-urban-parks-matter/frontline-parks/parks/405-magicalbridge-playground 24. Maag and Katsiyannis (2017). 25. McFarland et al. (2018), Kraus (2017) and Houtrow et al. (2014). 26. Hogan (2012) and Leiter (2012). 27. Fuller-Thomson et al. (1997). 28. Baker and Mutchler (2010) and Cox (2009). 29. Center on Budget and Policy Priorities (2017a, b), Romig (2017) and Burkhauser and Daly (2013). 30. Moynihan and Herd (2010), Shore-Sheppard (2008) and Elder and Powers (2006). 31. Moynihan and Herd (2010). 32. Moynihan and Herd (2010). 33. Center on Budget and Policy Priorities (2017a, b), Hogan (2012), Leiter (2012) and Moynihan and Herd (2010). 34. Center on Budget and Policy Priorities (2017a, b) and Moynihan and Herd (2010). 35. Rudowitz et al. (2019a, b). 36. Kaiser Family Foundation (2018a, b). 37. Kaiser Family Foundation (2018a). 38. Kaiser Family Foundation (2018a). 39. Rudowitz et al. (2016) and Moynihan and Herd (2010). 40. Moynihan and Herd (2010): 661.

Notes 41. 42. 43. 44. 45. 46. 47. 48.

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Kaiser Family Foundation (2018a, b). Sonik et al. (2016). Center for Budget and Policy Priorities (2019), Center on Budget and Policy Priorities (2018). Floyd (2018). Floyd (2018). Center on Budget and Policy Priorities (2019), Floyd (2018). Center on Budget and Policy Priorities (2019), Herd and Moynihan (2019), Floyd (2018). PEW (2018).

Appendix A: Respondent and Grandchild Aliases, Sociodemographics, and Diagnoses

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Female White

Female White Female White

57 75 70 55 63

55

Connie David Dawn Denise Donna

Doris

Dorothy 59 Elsie 62

Female Male Female Female Female

White White White White White

Female White Female White

69 62

Race Black White White Black White White White White White

Cindy Colleen

Sex Female Female Female Female Female Female Female Female Female

Age 66 53 67 73 63 76 61 74 67

Alias Anna Arlene Barbara Belle Betty Bree Candi Carole Chris

Widowed Single

Married

Divorced Married Married Single Married

Married Married

Marital status Married Married Married Widowed Divorced Divorced Widowed Divorced Married

1 1

1

1 1 1 1 4

1 2

GC with disability 1 1 5 2 1 1 1 1 2

Johnny Curt

John

Andy Bill Rob Nelson Tony; Sally

Sara Sam, Kit

GC alias Jason Carl – Riley Carl Ava Aly Nico Wendy, Mark

Male Male

Male

Female Male, female Male Male Male Male Male; female

Female Male Female Female Male Female, male

GC sex Male Male

2 11

11

2.5 16 9 10 11, 10

4 7, 2

GC age 7 8 – 9 5 13 12 11 10, 7

Cerebral palsy Cerebral palsy Cerebral palsy Autism, ADHD Tony: ADHD; Sally: ADHD and adjustment disorder Brain atrophy, LennoxGastaut seizures, visual & hearing impairments Autism ADHD learning disabilities

GC diagnosis Down syndrome Cerebral palsy Autism (4), ADHD (1) Autism Williams syndrome Down syndrome ADHD, asthma Autism Wendy: anxiety disorder, autism like symptoms Mark: ADHD, ODD Autism Down syndrome

No Yes

No

Yes No No Yes Yes

No No

Co-reside No Yes No No No No Yes Yes No

No Legal

No

No No No No Legal

No No

Custodial No No No No No No Legal Legal No

334 Appendix A: Respondent and Grandchild Aliases, Sociodemographics, and Diagnoses

73 71 59 46 73 65 50 70 60 48

60

61 40

72 59

61 55 71 60

Frank Hanna Heidi Ina Irene Jacki Jane Jean Jennifer Jill

Joy

Joyce Karen

Kelly Kim

Linda Lizzy Maria Marina

White Arab White White White White White White White White

Female Female Female Female

White White Hispanic White

Female White Female White

Female White Female White

Female White

Male Female Female Female Female Female Female Female Female Female

Married Divorced Widowed Widowed

Married Married

Married Married

Divorced

Married Married Married Married Widowed Married Married Married Married Married

1 1 1 1

1 2

1 great grand son 1 2

1 1 1 1 1 1 1 1 1 1

George Mark Marco Carly

Maya Izzy, Matt

Mindy Pam, Bob

Zak

AJ Danny Max Ray Liam Mona Jay David Tina Minnie

Female Female, male Male Male Male Female

Female Female, male

Male

Male Male Male Male Male Female Male Male Female Female

5 12 12 2

Down syndrome ADHD Prader-Willi, asthma Williams syndrome

13 DiGeorge syndrome 20 months Pam: intellectual disability, epilepsy, sensory processing disorder Bob: developmental delay 7 Cerebral palsy 17, 10 ADHD

Autism Autism Down syndrome Down syndrome ADHD, autism ADHD Down syndrome Down syndrome Cerebral palsy Down syndrome Heart defect Intestinal disorder 22 months Cerebral palsy, cortical vision impairment

9 19 4 3 4 9 17 months 6 2 3 months

No Yes No No

No Yes

Yes Yes

Yes

No No No No Yes Yes No Part-time No No

(continued)

No Legal No No

No Legal

Defacto Defacto

Legal

No No No No Defacto Legal No No No No

Appendix A: Respondent and Grandchild Aliases, Sociodemographics, and Diagnoses 335

63

76 66 69 66

61 61

64

66

61 46

Mary

Maureen Mia Paul Paula

Rachel Rae

Rose

Stella

Tessa Violette

Race White

White White White White

Female White Female White

Female White

Female White

Female White Female White

Female Female Male Female

Female White

Age Sex 64 Male

Alias Martin

2

3

1 1

1 1 1 1

Leila Noelle, Hope, Giselle, J, Carlson

Chase, Karla

Mia

Sandra Paul

Madge Cally Alex Mike

Female Female, female, female, fale, male

Male, female

Female

Female Male

Female Female Male Male

GC with disability GC alias GC sex 5 Total ¼ 5; 3 have Female Asperger’s, 1 has bi-polar, & 1 girl has Down syndrome 1 Alice Female

Divorced 1 Domestic 5 partnership

Divorced

Married

Single Married

Widowed Married Married Widowed

Married

Marital status Married

6 13, 6, 4, 3, 2

14, 8

8

16 3

20 13 6 7

4

GC age 4

Williams autism, ADHD Autism Down syndrome Down syndrome Autism, Seizures disorder Autism Down syndrome, immune deficiency Cerebral palsy with spastic quadriplegic reflux, seizures, visual impairment Chase: anxiety, antisocial Karla: ADHD, anxiety, audio & sensory processing disorders Down syndrome Numerous disabilities

GC diagnosis Down syndrome

Yes Yes

No

No

Yes No

No No No Yes

No

No Legal

No

No

No No

No No No No

No

Co-reside Custodial No No

336 Appendix A: Respondent and Grandchild Aliases, Sociodemographics, and Diagnoses

Appendix B: Grandparent Sociodemographic Information

Alias Anna Arlene Barbara Belle Betty Bree Candi Carole Chris Cindy Colleen Connie David Dawn Denise Donna Doris Dorothy Elsie Frank Hanna Heidi Ina Irene Jacki Jane Jean

Education BA+ No college Some college MA BA MA No college ABD BS MBA Some college No college MA BS Some college MS Some college No college Some college ABD BS No college BA+ No college BS MA BS

Annual household income 40–59 K 140–159 K 20–39 K 120–139 K 40–59 K 40–59 K 0–19 K 40–60 K 20–39 K 100–119 K 100–119 K 40–59 K Refused 200 K+ 0–19 K 180–199 K 120–139 K 20–39 K 20–39 K 200 K+ 80–99 K 100–119 K 180–199 K 40–59 K 20–39 K 80–99 K 40–59 K

Retired or reduced hours to provide care No No Yes No No Yes No No Yes No No Yes No No No Yes No Yes No No No No No No No No Yes

Moved to provide care No No No No Yes No No No Yes No No No No No No No No Daughter moved No No No No No No No No Yes

Adult child addiction No No No No No No Yes No No No No No No No No Yes No No Yes No No No No No Yes No No (continued)

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338

Alias Jennifer Jill Joy Joyce Karen Kelly Kim Linda Lizzy Maria Marina Martin Mary Maureen Mia Paul Paula Rachel Rae Rose Stella Tessa Violette

Appendix B: Grandparent Sociodemographic Information

Education BS Some college BS Some college Some college Some college Some college BA No college No college Some college MS Some college BS BA Some college Some college Some college Some college Some college BS Some college No college

Annual household income 40–59 K 100–119 K 40–59 K 60–79 K 40–59 K 100–119 K 80–99 K 80–99 K 40–59 K 0–19 K 100–119 K 60–79 K 60–79 K Refused 60–79 K 40–59 K 120–139 K 20–39 K 60–79 K 80–99 K 20–39 K 80–99 K 20–39 K

Retired or reduced hours to provide care No No No No Yes No Yes Yes No No Yes No No No No No Yes No No No No No No

Moved to provide care No Yes No No No No No Yes No No No No No Daughter moved Yes No Yes No No No No Yes No

Adult child addiction No No No No No No Yes No Yes No No No No No No No No No No No No No Yes

Appendix C: Interview Questions

1. Demographics—Date and location of interview? Name and phone number? Age? Education level? Marital status, marital history? Number of children, ages, where do they live? Number of grand children, ages, where do they live? Grandchildren with disabilities, ages, diagnoses, levels of severity Custodial care? Yes or No Coresidential? Yes or No 2. Employment status, history, hours of work, when retired? 3. When your kids were young, did your parents help out? Did any of your kids have disabilities? If so how did you care for them? 4. Now with your grandchild with a disability, what kind of care do your provide and how often. How many hours, and when. Do you help with homework, doctor appointments, meals, laundry? a. Do you provide financial assistance? What types, how much, how often? How has this changed as your grandchild has aged? How will it change as they age in the future? 5. Tell me about a typical day caring for your grandchild with a disability? What was one of your best days like? What was one of your most challenging days like? Talk me through a typical week caring for your grandchild with a disability? 6. Where do you tend to take your grandchild with a disability? Certain places? Certain strategies? How does it go? How do you feel? How do others react? How are your experiences same, different than other grandparents you know?

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Appendix C: Interview Questions

7. Does your parenting style—your manner of caring for your grandchild with a disability—reflect the parents’? Similarities? Differences? Disagreements? Tensions? a. Who else provides care? How do you compare your type of care to theirs? The other grandparents? 8. If still working Impact on job? Do you ever reschedule work to accommodate grandchildren with disabilities? Turn down assignments? Leave early or arrive late, miss a day? Distract you while at work, due to phone calls, etc.? Have your bosses or co-workers ever said anything? How does helping grandchild affect financial situation? 9. If still working Impact on grandparenting: Does working ever cause you to miss out on time with your grandchild with disabilities? Turn down taking care of the grandchildren? Leave early or arrive late or miss a day with the grandchildren? Distract you while you are with the grandchildren? 10. If married or with a partner Impact on marriage/partner? Do you care for grandchildren with disabilities together? Is there any tension about how much care or who should provide it? How do you balance the marriage or partnership with caring for grandchild with disabilities? 11. Impact on you: Does taking care of grandchildren with disabilities, ever make you feel stress? Make you feel fulfilled? Make you feel tired? Keep you feeling young? Make you feel healthier? Make you wish for a day off from all of it? Impact on emotional health? Social health? Physical health? Financial situation? 12. Did you imagine you would be caring for grandchildren with disabilities? Was this a surprise or expected? Do you ever wish you could spend your time differently? 13. Does taking care of the grandchild with disabilities affect your ability to work out, exercise? Go for a walk? Get to the doctor or dentist? Take care of your bills or paperwork? Take care of your own home? Take care of your yard, cars, upkeep of your home? 14. How does taking care of the grandchildren with disabilities affect your volunteering? Going to church? Having fun? Seeing friends? Travelling? Going on holidays? Seeing a movie or reading a book or doing a hobby? 15. Impact on children: Do your kids seem to appreciate that you are caring for your grandchild with disability? Do they give you gifts? Do they pay you? Do they worry about asking for help? Do they worry about you—making sure you have time to yourself? Do they wish you would care for the grandchildren more than you do? Do they ever seem frustrated that you have to be at work? What would they do if they did not have you to help them out? 16. Impact on others: How does the rest of the family and your friends feel about your taking care of the grandchildren with disabilities? Does this affect your time together, your social life, your intimacy? How do your other kids? Your parents or other relatives? How do your friends feel? Your neighbors? 17. What about social policies and programs. Do you use any? Which are good and not so good? Do you want to see any changes? New or different policies? What would you support?

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18. Outlook for the future: At some point will you stop caring for grandchildren with disabilities? If you won the lottery would you arrange anything differently? If you were queen/king for a day what would you do? 19. Other/ Future Carework: Do you take care of any other people? How does that go? Do imagine taking care of another family member? Spouse or other relative? What if you ever need anyone to take care of you, how will that go? Identification Number ___________ Name _____________________________ 1. Age _______, race _________, marital status _________work status _________ 2. Total household Income last year __Less than $20,000 __20,000–39,000 __40,000–59,999 __60,000–79,999 __80,000–99,999 __100,000–119,999 __120,000–139,999 __140,000–160,000 __160,000–180,000 __180,000–200,000 __200,000+ 3. Personal income last year? __Less than $20,000 __20,000–39,000 __40,000–59,999 __60,000–79,999 __80,000–99,999 __100,000–119,999 __120,000–139,999 __140,000–160,000 __160,000–180,000 __180,000–200,000 __200,000+ 4. Check any that you currently receiving __Private pension __Social Security __Medicare __Medicaid

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Appendix C: Interview Questions

5. Compared to your household needs how would you rate your income? __A lot more than we need __A little more than we need __Just what we need __A little less than we need __A lot less than we need 6. Compared to others your age, how would you rate your income? __A lot more than most __A little more than most __The same as most __A little less than most __A lot less than most 7. As you look ahead, how concerned are you about having enough money? __Very concerned __A little concerned __Not concerned at all 8. How would you rate your physical health? __Excellent __Good __Poor __Very Poor 9. Compared to other people your age, how would you rate your physical health? __Much better __Some better __The same __Some worse __Much worse 10. How would you rate your emotional health? __Excellent __Good __Poor __Very Poor

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11. Compared to other people your age, how would you rate your emotional health? __Much better __Some better __The same __Some worse __Much worse 12. How would you rate your exercise each week ___I get more than enough exercise ___I get enough exercise ___I need to get a little more exercise ___I need to get a lot more exercise 13. How would you rate your eating habits ___I am really careful to eat a healthy diet ___I am somewhat careful to eat a healthy diet ___I should be a little more careful about what I eat ___I should be a lot more careful about what I eat 14. How would you rate your rest and relaxation ___I get more than enough rest and relaxation ___I get enough rest and relaxation ___I need to get a little more rest and relaxation ___I need to get a lot more rest and relaxation Strongly agree

Agree

Disagree

Strongly disagree

For all respondents I feel it is my duty to care for my grandchildren with disabilities I feel lucky I get to care for my grandchildren with disabilities I wish my kids would hire a sitter more often I feel my family appreciates how much I take care of them I feel my children will take care of me when I am old Sometimes I worry how long I can keep this up I should be working for pay more hours each week I am worried I may run out of money I should be doing more for the grandchildren with disabilities (continued)

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Appendix C: Interview Questions Strongly agree

I think caring for the grandchildren keeps me healthy Caring for the grandchildren is making me feel old I wish I had more time to for myself I wish I had more time for my hobbies I wish I had more time to travel I would be bored if I did not have the grandchildren with disabilities Sometimes I feel pulled in too many directions A lot of people rely on me for help I need more hours in my day to get everything done For those who have parents still alive My parent is glad I take care of the grand kids My parent thinks I do too much for the grandchildren with disabilities My parent is worried about my health My parent fears I may run out of money My parent wishes I did more for her/him My parent needs more and more of my time My parent took care of my kids when they were young, too I wish my parent had taken care of my kids when they were young I spend a lot of time caring for my parent I wish I could spend more time caring for my parent For those who are married/partnered He/she is glad I am taking care of the grandchildren with disabilities He/she wishes I spent more time with him/her I wish I spent more time with him/her He/she needs me to take care of him/her This is not what we imagined for our later years We both love spending time with the grandchildren with disabilities I wish he/she would do more to help out at home He/she thinks I do too much for the grandchildren with disabilities He/she is worried our money will run out He/she wishes we had more time for travel/ hobbies

Agree

Disagree

Strongly disagree

Appendix D: Descriptions of Diagnoses

Glossary Throughout this monograph, we use a variety of terms to refer to various disabilities, health conditions, and medical treatments. Here we provide brief introductions to each health condition using edited summaries of information provided on the websites indicated. Throughout the book we also use the spellings these sites have deemed accurate. Thus, for example, DiGeorge Syndrome has two capital letters, Williams syndrome has one, and autism spectrum disorder has none. We interviewed 50 grandparents who are caring for grandchildren with disabilities and these are the diagnoses they told us their grandchildren have been given. The grandparents may have made some errors or omissions. Most of the diagnoses they reported are fairly common and a few are not. For example, sensory disorder is reported by one grandparent and this diagnosis is not currently recognized as a distinct medical diagnosis. Here, we have provided brief overviews of all of the diagnoses they reported. ADHD Attention-deficit/hyperactivity disorder (ADHD) is a brain abnormality characterized by an ongoing pattern of inattention, inability to sustain focus, and/or hyperactivity-impulsivity that is marked by restlessness and making hasty decisions, regardless of the consequences. This disorder interferes with typical functioning or development. An estimated 5% of US children have ADHD.1 Adjustment Disorder Adjustment disorder is characterized by atypical and emotional responses to stressful life events. Those with adjustment disorder lack coping mechanism to handle stress and experience group of symptoms, such as stress, feeling sad or hopeless. Adjustment disorder falls in a spectrum of normal behavior and major psychiatric disorders, which creates a conundrum in diagnosing patients.2 It can only be diagnosed if the symptoms are not explained by other major psychiatric diagnoses. It is difficult to estimate its prevalence because of known discrepancy of different diagnostic instruments.3 © Springer Nature Switzerland AG 2020 M. Harrington Meyer, Y. Abdul-Malak, Grandparenting Children with Disabilities, https://doi.org/10.1007/978-3-030-39055-6

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Appendix D: Descriptions of Diagnoses

Anti-Social Personality Disorder Antisocial personality disorder is usually diagnosed in adulthood but there might be evidence of it before age 15. Its diagnosis is predicated by a diagnosis of a conduct disorder before the age of 15 and men are three to five times more likely to be diagnosed than women.4 It is characterized by lack of empathy and no regard for right and wrong. People with anti-social personality disorder antagonize or treat others harshly, which eventually leads to criminal activities.5 The lifetime prevalence of anti-social personality disorder ranges from 1–4% in the general population4. Anxiety Disorder Anxiety in children is very common. About one in eight American children have some types of anxiety6. The different types of anxiety include generalized anxiety disorder and social anxiety. Symptoms of anxiety can vary from fear, uneasiness, insomnia and not being able to stay calm which can lead to physical symptoms such as shortness of breath.6 Asperger’s Syndrome Asperger’s syndrome is an autism spectrum disorder characterized by a distinct group of neurological conditions and is manifested by varied degrees of impairment in language and social skills, as well as abnormal patterns of thoughts and behaviors. Since Asperger’s syndrome falls under the broader umbrella of ASD, it is difficult to know its incidence and prevalence.7 Asthma Asthma is a long-term lung disorder, characterized by difficulty breathing and episodes of wheezing, breathlessness, chest tightness, and coughing. About 8% of American children have asthma. There are several “asthma triggers” that can cause an acute attack of wheezing, shortness of breath, coughing, and trouble breathing. Asthma is managed with medications and by avoiding asthma triggers, which can include allergens, pollens, smoke, or perfumes.8 Autism Spectrum Disorder Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. There are several types of autism and they are caused by different combinations of genetic and environmental influences. About one-third of those with autism remain non-verbal and about one-third have intellectual disabilities. Approximately1 in 59 children in the United States have autism. The rate varies by sex: one in 37 boys and one in 151 girls have autism.9 Autoimmune Disorder With autoimmune diseases, the immune system mistakes parts of the body, such as joints or skin, as foreign and attacks healthy cells. With Type 1 diabetes, for example, the body attacks the pancreas. With lupus, the entire body may be under attack. Incidences of various autoimmune diseases vary by gender and race. Women

Appendix D: Descriptions of Diagnoses

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are about twice as likely as men to get autoimmune diseases and they usually begin in early adulthood. Onset may be linked to hereditary factors, poor diet and exercise, environmental pollution, or excessive cleanliness.10 Brain Atrophy Brain atrophy, known as cerebral atrophy, is brain tissue damage that results in the brain being shrunk and affecting many functions based on its location. Brain atrophy is usually a manifestation of diseases and conditions that affect the brain, such traumatic brain injury, cerebral palsy, infections, and etc. Some of functional limitation from brain atrophy can be speech delay or absent, muscle weakness or paralysis, and behavioral issues.11 Cerebral Palsy Cerebral palsy is the most common type of motor abnormality in children that is caused by abnormal brain development or damage to the developing brain. It affects a child’s muscle movement, balance, and posture and can also cause intellectual disability. The lack of control over motor function varies for each child. In the US, the prevalence of cerebral palsy for 2008 was 3.1 per 1000 8 year-old children.12 Cortical Vision Impairment Cortical vision impairment is a condition that affects the visual system. It creates a range of vision impairment that goes from mild, severe and total blindness. It can be temporary or permanent. The major cause of cortical vision impairment is from the lack of sufficient oxygen in the body cells or blood causing brain tissue damage. It can happen in utero or after birth due to developmental brain defects, head injury, and infections.13 Developmental Delay Developmental delay is when a child is not reaching age-appropriate developmental milestones. These delays can be gross and/or fine motor and behavioral skills. The causes of developmental delay can be genetics in the case of Down syndrome, complications during pregnancy or birth, or environmental factors such as lead poisoning.14 DiGeorge Syndrome DiGeorge Syndrome (DGS) is also called 22q11. Approximately 90% of patients with DiGeorge Syndrome have a small deletion in chromosome number 22 at position 22q11.2. DGS is caused by abnormal formation of certain tissues during fetal development. Those with DiGeorge Syndrome may have learning disabilities, unusual facial appearance, congenital heart disease, and/or hypocalcemia. Approximately 1 in 4000 people have DGS.15 Down Syndrome There are three types of Down syndrome and all exhibit an extra, critical portion of chromosome 21 present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome which may include low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Approximately one in

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every 700 babies in the United States, or 6000 per year, is born with Down syndrome, making Down syndrome the most common chromosomal condition. Many children with Down syndrome experience intellectual disability such as learning disability.16 Gigi’s Playhouse17 is a network of facilities across the country for people with Down syndrome and their families. These Down syndrome Achievement Centers offer a wide range of social, educational, fundraising, and supportive services and programs for those with Down syndrome.18 Hearing Impairment Hearing impairment or hearing loss affects 1.4 babies out of 1000 in the US. The causes can be congenital, infections, or genetics. One out of 4 of babies with hearing loss also is born weighing less 5 1/2 pounds.19 Hearing impairment can hinder a child’s development, such as communication, language, and social skills and affect their full participation in daily activities. Heart Defects There are 18 different types of heart defects on infants, which are known as congenital heart defects. The heart defects are usually structural in nature arising from abnormal formation of the heart or major blood vessels. Congenital heart defects affect nearly 1% of births per year in the US. Prognosis of babies born with heart defects are favorable to those who got diagnosed early and received treatments. Heart defects can affect children’s full participation in everyday activities.20 Intellectual Disability Intellectual disability is a condition characterized by significant limitations in intellectual functioning and in adaptive behavior. Those with intellectual disability exhibit difficulty in reasoning, learning, problem solving, and social skills. Intellectual disability is usually diagnosed by an IQ test of 70 and lower.21 Globally, its prevalence is 10.37/1000 population.22 Intestinal Disorder Intestinal disorder is a condition that affects the lower gastrointestinal tract from the small intestine, to the colon, and to the rectum. Symptoms of intestinal disorder vary depending on its etiology or location. Some of the symptoms are a combination of the following: abdominal pain or discomfort, diarrhea, constipation, incontinence problems, stool leakage, and bloating or distension. Children on the autism spectrum are four times more likely to experience intestinal disorder symptoms than the general population.23 Learning Disabilities Learning disabilities are conditions that affect children’s ability to process information. They are neurologically-based and can impede children’s basic educational skills such as reading, writing and/or math. Learning disabilities can also interfere with children’s higher-level skills such as abstract reasoning and focusing on tasks. In the US, one in seven have some types of learning disability.24

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Lennox-Gastaut Syndrome Lennox-Gastaut syndrome is a severe type of epilepsy that is characterized by multiple and different types of seizures and accounts for only 2 to 5% of childhood epilepsies. Its etiliogy is unknown in 25% of cases. Lennox-Gastaut syndrome is not very responsive to common anti-epileptic drugs. Brain damage can ensue from frequent seizures and cause developmental and behavioral issues.25 Oppositional Defiant Disorder Oppositional Defiant Disorder (ODD) is characterized by angry and irritable mood, argumentative and defiant behavior, and vindictiveness. It varies in severity from mild, moderate to severe. The signs and symptoms of ODD generally appear during preschool years but may develop later. It is almost always diagnosed before the early teen years. Behaviors may negatively impact the family and the child’s social activities and schoolwork. There are no known factors that contribute to ODD, it could be a mix of genetics and environmental factors.26 Prader-Willi Prader-Willi syndrome is a genetic condition that affects many parts of the body. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an insatiable appetite, which leads to chronic overeating (hyperphagia) and obesity. Some people with Prader-Willi syndrome, particularly those with obesity, also develop type 2 diabetes, which is the most common form of diabetes.27 Reactive Attachment Disorder Reactive Attachment Disorder is a social functioning disorder that is a condition where children, usually before the age of five, do not form a healthy emotional attachment with their primary caregivers and lack of empathy. Often times, it is common among children who were neglected as infant and later adopted. It also has some physical characteristics such feeding difficulties and failure to gain weight. It could progress to criminal behaviors and cruelty to animals as the children grow older.28 Seizure Disorder Seizure disorder is when brain cells send out abnormal and intense wave of electricity which can result in muscle spasm, loss of consciousness, and other symptoms. These symptoms can be localized or generalized. It is the most common type of neurological disorder in children affecting 0.5–1% of them. Most causes of seizures cannot be identified, about seven out of 10. However, there are some seizures that are caused by fever from an infection, lack of oxygen supply to the brain, head trauma, or other illnesses.29 Sensory Processing Disorder Sensory processing disorder is not currently recognized as a distinct medical diagnosis. Sensory processing disorder, also known as sensory integration dysfunction, is a condition in which the brain has difficulty receives and responds to information

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Appendix D: Descriptions of Diagnoses

appropriately. Children with sensory disorder might have motor or behavioral difficulty. This condition is sometimes associated with other conditions, such as autism. The Sensory Processing Disorder Scientific Work Group reports that one in every six children experiences sensory symptoms that negatively affect their daily activities.30 Sensory processing disorder is not included in diagnostic manuals such as the DSM and ICD.31 Spina Bifida Spina bifida is a neural tube defect, where a person’s spine and spinal cord do not form and close properly and is usually diagnosed at birth. The severity of it depends on the type, size, location and complications. In the US, about 1500 babies are born with spina bifida annually and Hispanic women have the highest rate compared with non-Hispanic white and non-Hispanic Black women.32 Visual Impairment Vision impairment is a condition that affects normal vision in one or both eyes and be of different degrees from mild loss to total blindness. It can impact a child’s development by restricting their social, physical and educational participation. In the US, in 2015, it was estimated that more than 174,000 children aged 3–5 years were visually impaired.33 Williams Syndrome Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. Williams syndrome is caused by the spontaneous deletion of 26–28 genes on chromosome #7. Williams syndrome affects one in 10,000 people worldwide. An estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.34

Notes 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

https://www.cdc.gov/ncbddd/adhd/index.html https://medlineplus.gov/ency/article/000932.htm Webb et al. (2018). Werner et al. (2015). https://www.mayoclinic.org/diseases-conditions/antisocial-personality-disorder/ symptoms-causes/syc-20353928 https://adaa.org/living-with-anxiety/children https://www.aane.org/prevalence/ https://www.cdc.gov/asthma/default.htm https://www.autismspeaks.org/what-autism https://www.healthline.com/health/autoimmune-disorders

Appendix D: Descriptions of Diagnoses

351

11. https://www.ninds.nih.gov/Disorders/All-Disorders/Cerebral-Atrophy-Informa 12. 13. 14. 15. 16. 17. 18.

19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29.

30. 31. 32. 33. 34.

tion-Page https://www.cdc.gov/ncbddd/cp/facts.html http://www.tsbvi.edu/seehear/fall98/cortical.htm http://www.med.umich.edu/yourchild/topics/devdel.htm https://primaryimmune.org/about-primary-immunodeficiencies/specific-diseasetypes/digeorge-syndrome Bittles and Gasson (2004). https://gigisplayhouse.org/ https://www.ndss.org/about-down-syndrome/down-syndrome/. https://www. mayoclinic.org/diseases-conditions/digeorge-syndrome/symptoms-causes/syc20353543 https://www.cdc.gov/ncbddd/hearingloss/data.html https://www.cdc.gov/ncbddd/heartdefects/data.html https://aaidd.org/home Maulik et al. (2011). McElhanon et al. (2014); https://www.aboutkidsgi.org/lower-gi.html http://www.ldonline.org/ldbasics/whatisld https://www.epilepsy.com/learn/types-epilepsy-syndromes/lennox-gastaut-syn drome-lgs https://www.mayoclinic.org/diseases-conditions/oppositional-defiant-disorder/ symptoms-causes/syc-20375831 https://ghr.nlm.nih.gov/condition/prader-willi-syndrome https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654285/ https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-kids/ causes-epilepsy-childhood; http://pediatrics.aappublications.org/content/early/ 2017/04/03/peds.2016-3908 Ben-Sasson et al. (2009). https://www.spdstar.org/basic/about-spd https://www.cdc.gov/ncbddd/spinabifida/facts.html Varma et al. (2017). https://williams-syndrome.org/what-is-williams-syndrome

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