Existential Elements of the Family: Finding Meaning Through Life's Stages 9042936185, 9789042936188, 9789042937659

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C O N F L I C T, E T H I C S , A N D S P I R I T U A L I T Y 6

Existential Elements of the Family Finding Meaning through Life’s Stages

Laura Lynne Armstrong

PEETERS

EXISTENTIAL ELEMENTS OF THE FAMILY: FINDING MEANING THROUGH LIFE’S STAGES

CONFLICT, ETHICS, AND SPIRITUALITY

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Existential Elements of the Family Finding Meaning through Life’s Stages

edited by

Laura Lynne Armstrong

PEETERS LEUVEN – PARIS – BRISTOL, CT

2018

A catalogue record for this book is available from the Library of Congress.

No part of this book may be reproduced in any form, by print, photoprint, microfilm or any other means without written permission from the publisher © Peeters, Bondgenotenlaan 153, B-3000 Leuven (Belgium) ISBN 978-90-429-3618-8 eISBN 978-90-429-3765-9 D/2018/0602/90

Acknowledgements I would like to acknowledge all of the students and mental health professionals who reviewed the chapters of this book. Each chapter had a professional peer-reviewer and a student reviewer in order to engage the audience for whom this textbook is designed. I would also like to specifically acknowledge the following volunteer research assistants who provided invaluable assistance: Bruce Johnston, Elizabeth Lin, Kelly O’Brien, Robyn Dickson, Stephanie Desson, Erin Fitzhugh, Caeley Whitley, Matthew Atchison, and Amanda Burri. Sincerely thank you to Keriana Hodson for illustrating the frontispiece.

Table of Contents Laura Lynne Armstrong Preface: Introduction to Existential Elements of the Family. . . . .

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MEANING IN THE COUPLE RELATIONSHIP Maria Marshall & Edward Marshall Chapter 1: The Role of the Human Spirit in Meaning-Centered Marriage Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Paul T. P. Wong & Lilian C. J. Wong Chapter 2: The Spiritual Foundation for a Healthy Marriage and Family. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Reuven P. Bulka Chapter 3: Philosophical Foundations for Marriage Counselling . .

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Christian Bellehumeur & Laure-Marie Carignan Chapter 4: Meaning-making in the identity-intimacy paradox in couple relationships: A perspective based on Gilbert Durand’s Anthropological Structures of the Imaginary . . . . . . . . . . . . . . . .

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BECOMING PARENTS & PARENTING CHALLENGES Laura Lynne Armstrong, Chantal Elward, & Jenna Elward Chapter 5: Finding Meaning in Infertility, Miscarriage, and Neonatal Loss . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Ian Manion Chapter 6: Raising Children with Special Mental, Developmental, and Physical Health Needs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111 Emmalyne Watt & Laura Lynne Armstrong Chapter 7: Finding Meaning in Waiting: Challenges & Growth for Families on Psychotherapy Waiting Lists . . . . . . . . . . . . . . . . 131 Laure-Marie Carignan Chapter 8: Journeys from Shattered Dreams to Meaning-Making in a Resilience Framework—Families with Special Needs Children: Part One . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

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Laure-Marie Carignan & Christian R. Bellehumeur Chapter 9: Families with Children with Special Needs: Part Two – The Journey from Shattered Dreams to Meaning-Making in a Resilience Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183 Laura Lynne Armstrong Chapter 10: R.E.A.L. Tools for Everyday Parenting – A RationalEmotive Attachment Logotherapy Approach . . . . . . . . . . . . . . . . 215 Stephanie Larrue & Christian Bellehumeur Chapter 11: From Meaning-Making to Finding Meaning in Creating a Complex Blended Family: How to Foster a Healing Transformation? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245 Karlijn Demasure & Rejoice Hoedoafia Chapter 12: Safe at Home? About Incest and Spirituality . . . . . . 277 Kelly Kilrea Chapter 13: The Transcendence of Meaning in Spiritual & Secular Awakening . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303 FINDING FAMILY MEANING THROUGH BEREAVEMENT & END-OF-LIFE Mihaela Launeanu, Derrick Klaassen, & Janelle Kwee Chapter 14: Finding Meaning in the Aftermath of Family Bereavement: An Existential Analytic Approach. . . . . . . . . . . . . . . . . . . . 331 Caitlin Sigg Chapter 15: Learning to Live with Dying: Families Finding Meaning Amid Terminal Illness . . . . . . . . . . . . . . . . . . . . . . . . . . 355 Stephanie Yamin Chapter 16: Aging Family Members – The Importance of Preserving Meaning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 377 Lakshmi Sundaram Chapter 17: Sylvia’s Gift – A Caregiver’s Journey . . . . . . . . . . . . 393 A MEANING-CENTRED APPROACH TO THE FAMILY LIFESPAN Laura Lynne Armstrong Chapter 18: Conclusion: Meaning from a Lifespan Family Development Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 411 Author Biographies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 415

Preface

Introduction to Existential Elements of the Family Laura Lynne Armstrong

The spiritual dimension of families is rarely addressed in the psychological literature and clinical practice. Broader than spirituality as a part of religious practice, in Frankl’s existential tradition, human beings are mind, body and spirit, whereby “spirit” is one’s quest for meaning (1986). Humans have a mind and body, but the spirit is what it is to be human: Meaning-seeking beings (Frankl, 1986). Although meaning can be found in religion, Frankl and his meaning-therapy followers propose that our spiritual selves are nurtured by finding meaning in creating a work or doing a deed, by experiencing something or encountering someone, and by the attitude taken toward difficult circumstances. Families too have spiritual, existential needs. The chapters in this book tackle challenging issues from a spiritual, prominently existential perspective, helping couples and families make meaning out of life’s struggles. This book adds the spiritual element to emotional and existential couple and family psychology development issues, as existential spirituality is well known to help bring meaning and healing to life’s difficult situations (Frankl, 1986; Ivtzan, Lomas, Hefferon, & Worth, 2016). This book approaches the couple relationship, parenting, as well as trauma, bereavement, and aging within families from a variety of meaningcentred theories. This book is written from a lifespan family developmental psychology perspective. More specifically, it addresses the hardships that families can face through their journey as couples, in difficulties conceiving a child or in pre- and post-natal loss, parenting, caring for children with special needs, bereavement, as well as in caring for aging relatives. Through these difficulties, meaning can emerge from the ashes like a phoenix. Meaning is presented in this book through theory, research, and lived experience writings. Helpful tools to discover meaning are also offered. Further, meaning in family psychotherapy and counselling is incorporated so that practitioners or students may be provided with practical tools for use in their work with clients. Vignettes and stories, as well as reflection questions, are included to animate the concepts for readers.

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Section One of the book provides an introduction to existential perspectives on couple relationships and love. Although predominantly Logotherapy-centred, further theories from Positive Psychology and anthropology are also integrated with existential meaning-centred theory. Chapter 1 presents Frankl’s existential Logotherapy theory, and how it can be applied to couple and family life. Chapter 2 includes a Second Wave Positive Psychology (PP2.0) perspective, which is an amalgamation of Logotherapy theory, Positive Psychology, and traditional Chinese philosophy, to conceptualize the meaning of marriage and how to address marital issues. Chapter 3 further offers a Logotherapy perspective on marital and sex therapy. Chapter 4 addresses the couple relationship primarily by connecting Durand’s anthropological theory, a Frenchlanguage philosophy largely unknown in English psychology literature, to Frankl’s meaning-centred theory and traditional family psychology theory, such as family of origin theory. Section Two confronts the many difficulties that parents and families can face over the lifespan of children, from pregnancy concerns to developmental or everyday issues that affect children and parents. Developmental concerns include families raising children with special needs arising from significant cognitive, social, mental health, or physical challenges. Trauma is also presented. The existential theme that runs throughout these chapters addresses how families make meaning in spite of, and because of, challenges. Chapter 5 presents the issue of finding meaning, and potentially post-traumatic growth, in infertility, miscarriage, and neonatal loss through a PP2.0 lens. Chapter 6 is a lived experience piece on finding meaning in raising children with developmental health needs, threaded with Logotherapy theory. Chapter 7 concerns children that need specialized psychological attention and a proposed Logotherapy-based meaning-centred approach that could promote resilience for families on professional help waiting lists. Through an exploratory journey of developmental challenges, such as Down Syndrome and Asperger’s Syndrome, Chapters 8 and 9 integrate Logotherapy theory and Walsh’s key family resilience processes reflecting Benson et al.’s five components of spiritual development, namely: Transcendence, connectedness, meaning, purpose, and contribution. Chapter 10 uses a PP2.0 approach called Rational Emotive Attachment Logotherapy (R.E.A.L.) to provide practical tools to address common parenting concerns and to build meaningful family connection. Chapter 11 approaches meaningmaking in blended families from Durand’s anthropological perspective, bridging philosophy with a practical approach for positive development

PREFACE

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and resilience within the family. Chapter 12 presents the issue of the reality and literature surrounding sexual abuse in family life cycles, covering the spiritual struggle or meaningful post-traumatic growth that can occur following abuse. Chapter 13 aims to address child and family resilience in the face of challenges through from a Transpersonal Psychology perspective. From adversity, “awakening” may occur, such that each moment may become inherently meaningful, eliminating the need to search for meaning. Such a perspective is somewhat similar to descriptions of meaning stemming from post-traumatic growth discussed in PP2.0. Section Three addresses bereavement or end-of-life issues from existential meaning-centred perspectives. From child loss to terminal illness and aging issues, this section concentrates on meaning and mortality within the family system. Chapter 14 concerns family bereavement through an Existential Analysis and Logotherapy perspective, providing helpful strategies from this approach when working with families who have experienced loss. Chapter 15 addresses meaning-making through a family’s experience of terminal illness through various existential concepts and meaning-making practices. The dying process affects both the person with a life-threatening illness and the entire family system, while awaiting loss and separation. From a general meaning and Logotherapy perspective, Chatper 16 presents the home as the source of meaning for aging family members, central to perceived successful aging and wellbeing. Chapter 17 is a lived experience story of a family member caring for a parent with Dementia. It addresses the existential, spiritual prividges and pains of accompanying someone in the last stages of life. The chapter also explores how mindfulness and connection with Nature can foster meaning through caregiving. The conclusion in Chapter 18 connects the theories presented in this book to provide an overall summary of lifespan family development from an existential meaning-centred perspective.

MEANING IN THE COUPLE RELATIONSHIP

Chapter 1

The Role of the Human Spirit in Meaning-Centered Marriage Therapy Maria Marshall & Edward Marshall The Human Spirit According to Viktor E. Frankl’s Logotherapy and Existential Analysis Originally developed by Viktor E. Frankl (2006), a Viennese psychiatrist, Meaning-centered therapy, also known as Logotherapy and Existential Analysis, rests on the assumption that human life is intentional toward the discovery and actualization of meaning. The Greek term Logos can be translated as Reason, Purpose and Meaning. Thus, Logotherapy is based on humanistic and existentialist philosophical principles, according to which, the most important motivating force in life is to find and to live purposefully and meaningfully (“The Will to Meaning” Frankl, 2014). Meaning-centered therapy offers an anthropological view of the human person along three dimensions: Body, mind and spirit. The dimension of the body refers to our physiology. The dimension of the mind refers to our psychological capacities. The dimension of the spirit is the seat of metaphysical resources and capacities such as conscience, the capacity to love beyond the physical, humour, optimism, faith, hope, the capacity for self-distancing and self-transcendence (Frankl 1975, Marshall, & Marshall, 2012).

Figure 1: Illustration of the three dimensions of human existence.

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While the dimensions of body and mind are vulnerable, the dimension of the spirit is seen as an indestructible and irreducible dimension: The source of our ultimate freedom and “Freedom of Will;” the fountain of resilience and well-being in the face of adversity (Frankl, 2014). According to Frankl, our spirit (Noos) is essentially meaning-oriented (Logos). This existential dynamics is the basis of our fundamental motivation, the “Will to Meaning.” Spirit has the capacity to span time (past, present and future) and space (immanence and transcendence) in search of meaning (Frankl, 1975; 2006; 2014; Lantz, 1995). Meaning, according to Logotherapy is a trans-subjective reality, not constructed by human will, but rather perceived, discovered and grasped, which is available to every person in any situation, granting every being an instance of a singularity and uniqueness, and to human existence unlimited dignity (Frankl, 1975). The human spirit is seen as a “human universal” connecting every being in the search for the meaning of the moment, higher meaning and Ultimate Meaning (Frankl, 1975; 2000). This third principle, “Meaning in Life Under all Circumstances,” is the psychotherapeutic basis of Logotherapy (Frankl, 2006; Lukas, 2000). It affirms that meaning can be found by individuals, by couples, and groups through the activation of the resources of each person’s human spirit, especially through the capacities for self-distancing and selftranscendence. Thus, it implies that each individual has an area of freedom—and thus responsibility—at least in the area of their spirit, to search for and find meaning and to contribute to the well-being of their community (group, family, relationship). Existential Analysis is used in the therapy process to discern the areas of fate, vulnerabilities, and areas where individuals may have limitations due to illness, developmental conditions or circumstances (Frankl, 2000; Lukas, 2000). These areas are carefully explored and highlighted with the intention to see which are due to fate, over which individuals have little or no control over. Parallel to this process of diagnosing the so called “problem areas,” or stating the “facts,” Logotherapists outline strengths, resources, and “possibilities.” These are areas of freedom where responsibility lies and are examined by pondering “What is still possible?” “What is still healthy?” “What is still available?” Thus, Existential Analysis serves to foster a meaning-oriented explication of existence and building a meaning-oriented life narrative. It is complemented by Logotherapy, which through its methods that rely on the human’s spirit’s capacities for self-distancing and self-transcendence, is employed to orient clients toward areas where meanings can be found and actualized (Marshall & Marshall, 2015).

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The main methods of Logotherapy are Paradoxical Intention, Dereflection and Socratic Dialogue (Frankl 2006, Lukas, 2000). These methods, and others, inspired by Logotherapeutic principles, can be applied to foster the couple’s ability to discover and to actualize meaning in their everyday interactions and to live what Frankl termed as “existential human values” through their marriage (Lantz, 1987). The Meaning of the word “Marriage” Earliest documents written throughout the evolution of human consciousness, self-awareness, and reflection record the creation of man and woman in the “image of God,” (Gen 1:27) and sending forth and blessing their exclusive union as “one flesh” (Gen. 2:24; Mark 10:8) as a mission and purpose bestowed upon humanity. Consistent with the religious roots of the Canadian nation, “Marriage, for civil purposes, is the lawful union of two persons to the exclusion of all others” is the current definition of marriage in Canada (Bill C-38; 2005). Both Hebrew Scriptures, which Christians refer to as the Old Testament, and New Testament writings (i.e., Proverbs 31;10-31, Jeremiah 3; Hosea 1-3; the writings of Matthew 5:31, Luke 16:18, the writings of Peter in 1Peter 3:1-7 and Paul in Ephesians 5, and 1 Corinthians 7) further inform us that the ideal interaction between the marriage partners reflects higher values and is set forth by the Creator in a safe and nurturing environment. In this environment, the marriage partners are invited to participate as co-creators through their fidelity to each other and in bringing forth new life. Harmony in the relationship is to further create and nurture harmony in the world through love, kindness, faith, hope, patience and persistence. From a Logotherapeutic, meaning-centered, existential point of view, a healthy marriage relationship is one in which the partners can act in harmony with each other, and they both listen to and follow their consciences. The couple relational patterns allow both partners to discover and realize creative, experiential, and attitudinal values, which are part of their daily existence (Lantz, 1993). Meaning in Marriage Creative values are those values we “give to the world.” These are values through which we can make something new, lasting, and valuable that was not there before (Frankl, 2004). In marriage, the two partners influence each other and their surroundings. They both give to the world in

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terms of their work, artistic, or professional creations, each according to their abilities. Uniquely the privilege of couples is also to collaborate with creation in bringing forth a new life. This new life, a child, is essentially “spirit.” The couple does not give the spirit to the child. It comes from the Source of Life, and is therefore, unique, and singular, and belongs to the Source of Life. He or she is a spirit embodied in a body and mind, carrying the genetic information inherited, coded in the cells created from the two parents (Lukas, 2013). Experiential values are what we take from the world. They are what we experience in the form of art, the natural beauty of creation, the company of each other, and significant moments shared (Frankl, 2004). In the life of a married couple, there are many of such “peak experiences.” There are celebrations, traditions, special achievements, as well as sorrows. There is a confrontation with pain, guilt, and death, thus, suffering (“The Tragic Triad of Human Existence;” Frankl, 1967; p. 100). Meaning in the couple relationship can emerge from the experience of suffering or from the celebrations or other experiences of life. Attitudinal values refer to the response we give to those events that we have little or no control over. Events of fate are present in many layers and dimensions. These may include illnesses, natural disasters, catastrophes, accidents; in the social realm, the actions, ideas, mistakes, beliefs and words of others; and in the personal realm our own vulnerabilities, character predispositions, past, circumstances and experiences (“The Case for Tragic Optimism;” Frankl, 2006; pp. 137-154). In each of these cases, the area of “fate” is paralleled by an area of freedom, at least in our attitudes, stated Frankl (2004), to choose our response to these events: Therein lies our responsibility (Lukas, 2000). In the marital relationship, realizing attitudinal values through selftranscendence means reaching out to the other with compassion and kindness. It means rising above self-interest to include the interest of the other (Frankl, 2006; Lukas, 2015). Although two people influence each other, their spirit does not merge—each individual retains freedom and responsibility for their own actions and their consequences, their own behavior, their own ideas, errors, and words, within the realm of a healthy functioning body and mind. Each individual in the couple relationship has a responsibility to tap into his or her own resources and to choose the best response. If the response is such to act in a selftranscendent manner, partners can bring healing to a hurting relationship. As long as one member of the partnership acts in a self-transcendent manner, there is hope for the relationship (Lukas, 1991; 2012). As long

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as there is access to the resources of the human spirit (which access may be temporarily blocked by illness, senility or immaturity), realizing attitudinal values is the highest form of human achievement possible (Lukas, 2013). In case of illness, senility, or immaturity, if the access to the resources of the human spirit is limited, blocked, or temporarily inaccessible, Logotherapy maintains that (1) “…the human being can be disturbed but not destroyed” since “behind the mask of the disease, the spiritual person is still there” and (2) “…the spirit/noetic core cannot fall ill and therefore it can distance itself from the psychological and physical dimensions.” “…It is not free from the conditions but free to deal with them” (“Psychiatric Credo;” and “Psychotherapeutic Credo” Frankl, 1984, pp. 134-135; Frankl, 1994, pp. 86, 96; Frankl, 2006; Lukas, 2013). Meaning through Marriage Corresponding to the three-dimensional view of the human person, Frankl (2004) conceptualized love in human relationships along three dimensions: (1) Physical, which related to attraction, physical appearance and attributes, for which dimension he used the word Eros; (2) Psychological, which encompasses feelings, thoughts, goals, perceptions, cognitions, which he termed Philia; and (3) Spiritual, which refers to ideas, ideals, values, hopes, dreams and shared meaning which he termed Agape. The highest level of connection, Agape, is a theological term which refers to full union and communion, the latter which is a Christian liturgical term. Agape and communion refer to love beyond the physical and psychological dimensions to include spiritual fellowship and “oneness of heart,” which is ideally reflected in a marriage relationship.

Figure 2: Illustration of the three dimensions of human relationships.

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The relevance of the spiritual connection for the life of the married couple can be appreciated in the light of Logotherapy’s assertion about the resources, qualities and properties of the human spirit: The spirit “can be with” the beloved even if a direct psychological or physical bond at the time may not be possible (Lukas, 2013; Lukas, 2014; Marshall & Marshall, 2014). Spirit is always meaning oriented. When meaning cannot be seen, or the search is ignored or stifled in the relationship, the existential consequence for the couple is existential frustration, or existential vacuum (Frankl, 1967; 1978; 1996; 1996b; 2006). Existential frustration can be a consequence of wanting to actualize a value that is now not available. For example, if one partner is used to the role of the caregiver, and this role for some reason is no longer possible to be fulfilled, such as if the caregiver herself is ill, or if the cared person no longer needs the care. Initially, the person who was the caregiver may experience a sense of frustration as they go through a transition period to find satisfying meaning. Not discovering meaning for a long time may result in an existential vacuum: A feeling of inner emptiness (Frankl, 1978; 1994; 2006; 2014). Inner emptiness, boredom, fatigue, may be seen for example, when couples who work long hours outside the home spend time away from each other on the weekend, but feel that something is missing from their relationship. Over time, if that couple maintains the same pattern, existential anxiety, symptoms of emotional disturbance, or depressive symptoms may signal that meaning-orientation has been compromised. The couple may also find themselves increasingly stressed out when dealing with everyday events, and “at risk” for a breakdown in coping if they have to face an external crisis. The couple’s Will to Meaning may be compromised by (1) dysfunctional communication or relationship patterns (i.e., excessive success or pleasure orientation instead of meaning-orientation; fatalistic attitudes of blaming the other, past, or circumstances for shortcomings; attempting to change the other instead of oneself; lack of acceptance of the other; lack of appreciation of the other), which can lead to (2) a limited realization of creative, experiential and attitudinal values; leading to (3) existential vacuum in the marriage, and (4) the manifestation of signal symptoms (which can be disturbances, distress, despondency, etc.; Lantz, 1987). The existential vacuum can be also observed at the root of the “mass neurotic triad” of addictions, violence (harming others, or oneself), and depression (Frankl, 1978, pp. 28-30; Lukas, 2000; Lukas, 2013).

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Logotherapeutic Intervention with Married Couples It is often said that love makes people “blind.” The task of the Logotherapist is to help couples to become “seeing” and “value-discerning:” Seeing themselves, and each other in their two-fold reality: (1) as they are, and (2) as they can be. From this vantage point, each partner is responsible for their own actions and behavior in “becoming” their best selves, developing according to their potential and building a meaningful co-existence relationship together: “Existence is a way of being, characteristic to human beings, which is not a factual way of being, but a facultative way of being. It is not a unique and never changing way of being, as neurotic people tend to misinterpret it, but the possibility to always change oneself.” (Frankl, 1994; p.61). Meaning in marriage relies on both partners’ cooperation to reach a shared vision and shared goals. Their values may not be exactly the same, or their priorities may differ, but as long as the couple is able to acknowledge some values which are shared, they can reflect on what connects them and sustains their bond. Thus, the priority in meaningcentered marriage therapy is to visualize meaning as the binding force between partners for building their alliance. Spouses are either seen together in meaning-oriented marriage therapy, or apart. This depends on the couple’s commitment or the nature of the issues that brings them to the office. Usually, for the sake of marriage therapy, the therapist requests the presence of both partners, so that they can all work together. The purpose of the initial dialogue is to understand the concerns, and to discuss an action plan. In this diagnostic phase, the Logotherapist pays attention to the words and communication patterns of the partners and discern the strengths and concerns they present. The therapist then discusses with the couple whether the best course of treatment would be to see one of them separately for a certain duration of time, and then to resume conjoint therapy. This would be the case for example when either one partner, or both of them, manifest high emotional volatility and need some time to vent their emotions and gain perspective in order to participate in a dialogue. Whether together or apart, the intention is to regain stronger meaning-orientation for the sake of the relationship. When one or the other partner or both, out of their own freedom of will decide not to participate in relationship building activities, the therapist needs to respect this choice. There are also situations where meaning-oriented therapy cannot be undertaken, such as in an abusive

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relationship, for example, where the partner’s safety takes precedence over conjoint therapy. Three of Logotherapy’s non-specific methods were developed to target dysfunctional behavior or relational patterns which can lead to frustration of the will to meaning. Among them are Paradoxical Intention, De-reflection and Socratic Dialogue. These methods are directly intended to alter or modify a pattern of habits, assumptions, behaviors, which interfere with the realization of meaning. Paradoxical Intention Paradoxical Intention relies on the human spirit’s ability for selfdistancing: Observing oneself, reflecting on oneself, and being kind to oneself through the use of humour. It is a technique that was developed for the treatment of conditions whereupon excessive reflection on oneself (hyper-reflection), resulted in an autonomic hyperactivity, hyper vigilance, and the resulting anticipatory anxiety lead to avoidance (Frankl, 1978; 1994; 2004; 2006; 2014). Originally, paradoxical intention was used as an adjunct or complementary treatment approach for obsessive compulsive conditions and phobias, where medical treatment had been effectively combined with Cognitive-Behaviour Therapy, as well as Logotherapy. “’Go ahead grouch, spoil my day!’—a moody person may remind themselves in a humourous way; “Let’s see if I can do the skeleton dance! I can excel in shaking!’—an anxious worker may humourously remark to him or herself; “Where oh where is my anxiety today, I would start feeling lonely without it?’”—these are some examples how humour, a resource of the human spirit, can be used in a dialogue with the symptoms of anxiety (Lukas, 1982). A goal is not to ridicule oneself, but to break the pattern of avoidance (“…one cannot avoid that which is directly intended. Intention and fear cancel each other out;” Frankl, 1994, p. 168). When humour is injected into the situation, the chain of feeling trapped at the level of the psychological domain is broken. Clients can discover an area of freedom that they have in their spirit—their attitudes—and their ability to self-transcend a situation toward a meaningful goal. This situation may have otherwise been avoided; thereby clients may have been missing an area where meanings—creative, experiential, or attitudinal—could be realized. In a broader sense, paradoxical intention, using a bit of humour, can be a very helpful “ice breaker” in the conversation with couples and it

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can also be the catalyst to face difficulties instead of avoiding them at all cost. With help from paradoxical intention, couples can be reminded that it is all right to have a “cooling off period” if their emotions rise too high. It is exactly because they intend to love each other that they should not give up “rising to the occasion” of facing challenges and challenging situations together. De-Reflection De-reflection relies on the human spirit’s ability for self-transcendence. The method was originally developed for aiding the patterns of excessive: Self-reflection, hyper-reflection (arising from hyper-intention often directed toward the self rather than the other), and at happiness, pleasure, or success instead of meaning (Frankl, 1993; 2006). The outcome of the hyper-intending, and hyper-reflective chain is a vicious cycle, whereby satisfaction is diminished, pleasure and happiness are fleeting, and the person may collapse in the exhaustion of a combination of selfpity and self-loathing. Such cycle was described in the case of sexual dysfunctions, in which medical conditions could not be identified, and the patients reported and concern and level of dissatisfaction with themselves. The instruction of the Logotherapist in this instance was to “… forget about yourself, and focus on your partner” (Frankl, 2004, p. 153). The rationale behind this suggestion is that “if one directly wishes for happiness, one misses it” (Frankl, 2014; Lukas, 2000, p. 175). However, if one lets happiness unfold naturally in the context of a meaningful encounter, one receives happiness as a reward. “The more people are able to lose themselves in the service of others, or in the service of others, the more they will find themselves” (Frankl, 2014, pp. 97-98). De-reflection can be also used in marriage counselling when the couple repeatedly have an impasse because they focus on events or facts in their conversation that they cannot change. This phenomenon is also called “burdened communication,” when patterns or themes from the past emerge in the present conversation, blocking effective communication, or de-railing the thought process and channeling from active and constructive to past facts or events towards which the couple repeatedly experiences helplessness and hopelessness. The couple can be instructed to set aside time for such discussions, but to “forget” them (act “as if forgotten”) during conversations when immediate problem-solving is required.

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De-reflection from the negatives to strengths and positives from time to time is also encouraged. This helps the couple not to dwell too much on negatives without a solution. One can still experience a pleasant presence and mindful dialogue, or enjoy a quiet evening, or a nice meal, even if one has to deal with frustrating, challenging, energy consuming events. De-reflection and transcendence toward the other person allows one to be fully present to the other and to enjoy positive synchronicity, pleasurable events to build resources, and resilience for the future. The Socratic Dialogue The above mentioned two methods (Paradoxical Intention and Dereflection) are useful in the treatment of anxiety resulting from either avoidance or hyper-intension (excessive forcing). Socratic Dialogue is a method that was developed to modify attitudes and to broaden an awareness of meaning connections from conscious, pre-conscious, or unconscious spiritual resources. It is most useful in cases where one is confronted with unavoidable suffering and assumes a hopeless and helpless attitude (Lukas, 2000; 2014). Through an inquiry, which helps to understand the couple’s current situation, therapists re-construct the extent of the limitations, and gently guide the couple to explore their strengths, values, hopes, and achievements. Therapists help to scan the present and the past with the specific intention to outline meaning connections and an emergence of Noetic resources (resources of the human spirit). They bring these resources to the couple’s awareness and affirm their belief in life’s meaningfulness and their dignity (Lantz, 1993). This method is particularly useful as one supports couples through stages of transition and changes throughout the life span. It taps into existential concerns and affirms or orients couples toward attitudinal values. The Socratic Dialogue rests on assumptions such as: “Life’s brevity does not take away from its meaningfulness;” and “Meanings deposited in the granary of the past remain” (Frankl, 1975; 1978; pp. 115-128; 1984; pp. 139-154; 2004). It offers consolation, and invites couples to experience appreciation, gratitude, or awe, thereby preventing and “remediating” the feelings of helplessness and hopelessness—modifying the “we can’t” to something like “although we can’t….we still can…..” Thus, Socratic Dialogue highlights couple’s own strengths and wisdom and invites them toward concrete personally meaningful goals (bridging past, present, and future). It rests on the human spirit’s

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ability to take a stand toward adversity, which in Logotherapeutic terms is called “the defiant power of the human spirit” (Frankl, 1984; p. 147). The Mountain-Range Exercise There are other methods in the Logotherapeutic and existential analytic toolbox which are informed by Logotherapeutic principles and are aimed at increasing meaning-oriented discussion, communication, and conflict resolution skills. Among them are the Mountain-Range Exercise, the Meaning-Oriented Question Scheme, and the Method of Common Denominators. The Mountain-Range Exercise was first described by Ernzen (1991) and was based on Frankl’s invitation in the Doctor and the Soul (1986) “to spread out our lives before us like a beautiful mountain range. There are peaks and valleys. There are paths at low elevations, leading up to the top, convenient to almost all, steep tracks, rocky paths, meandering trails, steep hills, which call for more preparation, even previous training to attempt, and there are cliffs and ravines which may have to be scaled with special training and equipment. From the top, there is a breathtaking view. As we descend, we still need to be careful of our steps….” A way of using the exercise with couples, individuals, or groups is to imagine life as a mountain range with peaks and valleys. Then, picture who would appear on the peaks, “Which individuals have influenced us the most, and why?” Couples can be invited to draw their own mountain range and to divide it into sections, past, present and future. Place the accomplishments they are proud of on the peaks (and sorrows as well, if they wish, can be named). This exercise invites a reflection on the uniqueness of each marriage, each path, as well as the history the couple shares. Beyond the chronological history, however, the therapist draws attention to the “meanings safely deposited in the granaries of the past” and the couple’s discussion of how they see their present and hopes for the future: “If we visualized your relationship as a series of mountain-ranges, with peaks and valleys, I’d like to invite you to ponder which events or things you have accomplished together that you would put on the peaks?” “What accomplishments would you name that you feel you could be proud of yourselves for?” “Which events would you put in the valleys or on the hills?” “Which strengths helped you to reach the journey from that time to now?”— These are some questions the therapist can use to join the couple’s

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unique journey and utilize the human spirit’s resources to guide the couple from self-reflection to self-distancing and self-transcendence. Meaning-Oriented Question Steps Meaning-Oriented Question Steps were developed by Elisabeth Lukas (1997, 2000). They are based on the practice of direct communication by the couple. To avoid “burdened communication” (answers based on what happened some other time in the past, assumptions, or judgements; Lukas 2000; p. 204), the couple is instructed to focus on what has been said. In doing this, the couple is asked to summarize, and repeat, make sure the understanding was correct, and answer with “I statements” in the here and now. Through this, both partners can feel heard and are allowed to express their views without being interrupted or judged. When couples have gained sufficient proficiency in listening skills, being authentically present to each other, and responding to each other, the stage is built for introducing a further element in conflict resolution and negotiation. Thus, couples can have a self-transcendent attitude when resolving a conflict. Step I: A couple describes a certain conflict situation, which they have gone through without solution. The therapist summarizes the reported events, and asks the partners to take some time to reflect on the following question: “What do you think was the actual element that upset your partner the most in this incident? What was it that you have said or done that you are guessing causes the most suffering to him/her?” Individually, both answer and the therapist summarizes the responses. When partners think about their own actions in front of each other and verbalize their thoughts with help from the therapist, they understand each other better. Both persons register the effort of self-examination, and it is welcomed as a valuable resource in the relationship. After both have answered, the therapist crosschecks the answers: “Is it right what your partner guessed?” The therapist mentions the specific guesses by both. If one or both fail to agree, then they can correct what was guessed first. Usually, couples are quite accurate in guessing what hurt the other. This insight can be appraised as a strength for the relationship and affirmed by the therapist. Step II: The therapist asks the couple to reflect: “In case a similar situation happens again, what possibility do you see for preventing your partner from getting so upset?” Or, alternatively, “If a similar situation

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occurred, what do you think you could do to reduce the suffering of your partner?” The therapist again summarizes and then crosschecks the answers: “Would this change in behavior reduce the amount of suffering you would experience?” If one or both fail to agree, they are then allowed to reflect and suggest other guesses. However, the therapist does not allow one or the other partner to make further, greater, or unrealistic demands beyond what one can concretely change, in relation to the current situation. The suggestions have to be realistic. The therapist then asks both partners: “To what extent is this change a possibility for you?” Step III: The therapist asks: “Are you ready to realize the possibility which you mentioned? Are you ready to change your behavior in a similar situation independently of what your partner does?” Both can answer “yes” or “no.” If only one of them answers “yes,” there can be hope for the relationship. Finally, the therapist may ask both partners: “Are you happy about the readiness of your partner to change his/her response in a similar situation?” “Can you accept it as genuine?” Example 1 Helen and Ron Jones (fictional names) have been married for 35 years. They have two adult daughters who are married and do not live with them. Ron says that he is frequently angry and requests “tools to be able to deal with my anger more effectively.” Anger management can be the focus of individual meetings with Mr. Jones. This can be suggested. However, when the therapist inquires about how the anger is affecting their relationship, they offer the following example. They own two vehicles. Ron usually drives to work in his truck; Helen in her car. This past weekend, they report that Ron drove Helen’s car to town. The car broke down later that weekend. When Helen was about to leave for work early on Monday morning, she found Ron already in the garage, trying to fix the car. “What’s wrong with the car?” she asked. “Leave me alone!” was his reply, “with a tone in his voice.” After this, Helen walked out of the garage, hurt. She called a friend and arranged a ride to work. She felt “hurt all day long” and did not talk to Ron for the rest of the day. Ron was hurt too. He stayed in the garage and “blamed myself for having been angry with her.” Helen and Ron say that such “silly little incidents” are quite frequent in their relationship. Ron’s usual reaction to them was “yelling and screaming,” which neither one of them are happy

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about. Ron says that while Helen used to withdraw in similar situations in the past, she is standing up for herself more often now. Both of them report that their relationship suffered for many years because of this habitual way of communicating. In Logotherapy, the therapist builds on the strength in the relationship, as well as the strengths of the partners as individuals. This strength can be seen primarily in the many shared experiences and triumphs that the Joneses have experienced together but do not mention during the above segment of the conversation. “Habits” are also part of their relationship—part of many relationships—especially where the partners have known each other for a long time. Likewise, the Joneses recognize their reactivity to each other as one “habit” they developed. Above is a typical example of the abovementioned “burdened communication,” when partners do not communicate on the basis of what is happening in the present but they operate on the basis of assumptions; on the basis of what they think is communicated to them. This “responding to what I think I know you might say next” actually damages communication because, as couples will themselves acknowledge: (1) most of the time the assumptions are wrong and (2) most of the time the assumptions lead to miscommunication, misunderstanding, and even more hurt feelings. In this case, the openness to meaning possibilities atrophies and, with a term borrowed from Positive Psychology, the “positivity ratio” in the relationship is significantly reduced. In the mentioned case, the covert thought process underlying the overt response pattern could be reconstructed as follows: Ron: I better get this car fixed before she needs it. I hate to tell her this happened again. I hate such breakdowns! What am I to do? (Quietly works in the garage). Helen: Here we go again. Surely, my husband is not a very honest man. He drove my car on the weekend, and did not even bother to let me know what happened. “What happened to the car?” Ron: This time, it is not my fault that the car broke down. And she still keeps blaming me for it. I am really tired for being blamed for something all the time. “Leave me alone!” Helen: Well that does it! If he wants to continue this game, he will have to do it without me! (Leaves the garage.) Ron: This is just typical of my wife! (Stays in the garage.) We see that both partners act and react automatically, with not much thought given to authentic—more gentle, patient, loving, kind, positive, independent, flexible, responsible, or creative—ways that there could be

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for addressing the same problem. The assumption behind such communication is: “I would respond differently, if only my partner would change his/her ways!” Logotherapy’s concepts of self-distancing can help couples to realize that difficult life situations do not have to determine our response to them. Individually, we still have an area of freedom within which we can choose what message we want to send out into the world, according to our best knowledge and ability. The therapist can help to facilitate such self-distancing by suggesting: “Observe now your ‘best self,’ your ‘authentic self’ when talking to your partner and responding to him/her.” This can lead to a hypothetical reconstruction of the dialogue as follows: Ron: I know I should have told her yesterday about the car. It is so bad that this happened again. She will have to get to work soon, somehow. Let’s see if I can fix this car quickly! (Works in the garage.) Helen: Ron is already working in the garage. I wonder what happened with the car this weekend? “What happened to the car?” Ron: It’s too bad that the car broke down this weekend when I was driving it. Helen must be anxious to get to work by now. I can hear the worry in her voice. When she is worried she gets impatient easily. Plus, I did not even tell her in advance what happened, so it’s a bad surprise. In these situations it does not help if we get short tempered. I find that it works better if I try to remain patient and calm. “I am trying to fix your car because it broke down on my way home. I don’t think it is safe for you to drive it now. I did not tell you yesterday because I did not want to upset you. I thought I could fix it fast, but I have not managed to fix it yet. I know it is time for you to go to work.” Helen: Yes, it’s too bad that the car broke down. It’s a pity that Ron could not fix it sooner, but he is trying his best now. I don’t have to get upset at him for that. But why did not tell me this yesterday, maybe I could have arranged something by now. “How will I get to work then?” Ron: I could offer to drive her to work, or she could phone one of her friends. Today I have a day off. “Let’s take my truck. Today, I’ll be you chauffeur!” Helen: That’s a good idea. “All right, let’s go.” When partners are able and willing to put themselves into each other’s shoes, and able to understand each other’s feelings and automatic reactions better, it is easier to look beyond their one-sided interests to the interest of both. In other words, they are challenged to consider not the area that they cannot control—the partner’s choices and actions— but their own area of freedom. As mentioned earlier, according to

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Logotherapy and Existential Analysis, our last area of freedom is in our spirit—the attitude we choose toward events beyond our control. The attitude we see in this re-constructed conversation is based on such selftranscendent attitude, reaching out beyond the self, intending the best interests for the partner, and vice versa. An illustration of how such attitude can be fostered in practice, let’s consider a brief excerpt from the dialogue with Mr. and Mrs. Jones during the first phase of the Meaning-oriented question steps: Therapist: Helen, what do you think was the actual element that upset Ron the most? What is it that you may have said or done that caused the most suffering? Helen: Well, I think that he thought that I was blaming him as soon as I entered the garage….I did not say anything to him but just asked what’s wrong with the car. Therapist: Was it that you were blaming him that could have hurt him the most? Helen: No, actually, I do not think it was that I was blaming him. I was not really blaming him, at least I do not think so. I was not upset when I saw that he was working on the car because this car breaks down every once in a while. But I might have been impatient with Ron when I asked him about the car. T: What do you think might have hurt Ron about this question? H: Well, I think that it was not so much the question itself but the way in which I asked it. I asked it impatiently. T: So, what I hear from you is that you think what hurt Ron the most is that you asked him impatiently about the car? H: Yes… T: What do you think hurt him about this question? H: I think what hurt him the most about it is that I could have said something else instead…like….I don’t know…Maybe, asked him what he was doing so early in the garage? T: What do you think the second question would have communicated to him? H: That I care about what he was doing…. T: So, you are saying that you think that your husband would like if you showed that you care about him more…Is that so? H: Yes, I think so…. T: What do you think was the actual element that hurt your husband in this incident?

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H: That I did not care about him…That I cared more about the car than about him. T: But I understand you were anxious to get to work. Would it not be expected that you are concerned about the car? H: Yes, but I could have said something nice to my husband still. After all, he was trying to help me get to work and he got up really early to start working on the car. T: Is it all right if we summarize what you said by stating that you think what caused the most suffering to Ron that morning was the fact that you expressed more concern about the car than about him? H: Yes…This is what I think. In line with Lukas’s steps, Ron was questioned in a similar way. Helen later guessed that it would help in the future if she did not keep a grudge and greeted her husband cheerfully in the morning before discussing daily events. Ron acknowledged that it was upsetting for his wife to find out that the car broke down “by surprise.” He thought that in the future he could make an attempt to inform her of the daily happenings promptly. This, she confirmed, would be a sign of respect and caring. During the following meeting, Ron and Helen discussed a plan to regularly spend time with each other, not only to make plans for the upcoming week, but also to find words of encouragement for each other. During the subsequent meetings, they were also increasingly able to examine ways in which they could give constructive feedback to each other and make requests. Ron did attend an anger management group where he learned about the relevance of acknowledging and expressing emotion, ways of relaxation, and emotional regulation. A year later, Ron and Helen reported that they were satisfied with the progress they made, and although things were not perfect all the time, they were “happily chugging along.” As apparent from the above example, the purpose of meaningoriented questioning is not to “shift blame.” It is rather to shift focus, to shift orientation from oneself to one’s possibilities. It is within one’s area of freedom that such possibilities can be explored. It is within one’s boundaries that such choices can be responsibly acted upon. While the meaning-oriented question steps are not panacea against all the challenges of married life, it can point couples toward more authentic and less automatic ways of responding to each other. Such authenticity is an essential pre-requisite of being able to journey together in the relationship (Marshall & Marshall, 2013).

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The Method of Common Denominators This method was first described by Frankl in The Doctor and the Soul (1986; 2004) as a way to help people make decisions when they are confronted with equally desirable goals. The realization of any of the values inherent in these goals represents a unique opportunity, which not only affects the couple, but also their surroundings (i.e., family, friends, society, etc.). The task of the therapist is to project each goal to the level of values where people can become aware of their own value-hierarchy. Saying “yes” to one value, can sometimes mean saying “no” to other values. Example 2 A married woman, the mother of two children, contacted Dr. Elisabeth Lukas late one evening to request immediate help. She said that she was desperate because she was torn between her commitment to her husband and a casual relationship with her lover. She said that her husband and children “know nothing” about her strong attachment to her lover, but that she could not go on living without being able to make a decision between staying with her family or leaving to be with her lover. She stated that she attended several counselling sessions in the past but, unfortunately, this was not helpful to reach a decision. Over the phone, the therapist requested that this woman take a pen and a sheet of paper and draw a balance sheet of “common denominators”: “First, think about how many people would be affected by your decision to leave your husband and to live with your lover. Then, put the names of all these people in a column, one below the other.” The woman listed five people. Her husband, her lover, herself, and two children. Next, Lukas asked her to think about how each of these people would feel about her decision to leave? In the column next to it, “Consider how they would feel about your decision to stay, and why they would feel this way?” Accepting the task, the woman evaluated the feelings of each person one by one. She said that her husband would be very sad if she left because he loved her very much. Promptly, Lukas asked her to put a “minus” sign next to her husband’s name, in the column “leave,” and a “plus” sign next her husband’s name in the column “stay.” Her lover, continued the woman, does not really care. Lukas asked her to put a “plus” and a “minus” sign next to her lover’s name in both columns. “Myself,” continued the woman, “don’t really know what to do.” So, again, Lukas asked her to put a “plus and a minus” sign next to her

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name in both columns. “My children would miss me very much,” said the woman. Lukas asked her to put two “plus” signs in the column “stay” and two “minus” signs in the column “leave.” Then, she asked her to add up the pluses and the minuses in both columns. The total for column “stay” was five pluses and two minuses. The total for column “leave” was two pluses and five minuses. These “results” indicated that it would be “better” for her to stay. However, Lukas wanted to refrain from imposing or making value judgments. Logotherapy teaches that the ultimate judgment and responsibility always belongs to the clients. Otherwise, the therapist would compromise their freedom and their dignity to make responsible decisions. She asked a question that prompted the woman’s own conscience to speak up: “There is only one thing left to do, and it concerns a decision that no one else can make instead of you: “You have to make a decision on how much pain you want to inflict upon those whom you love” Alternatively, she could have said: “Only you can decide how much pain you are going to spare those whom you love?” But there was no need to say more. The woman thanked Dr. Lukas. The wisdom that she already knew reached her conscious awareness (Lukas, 1995; cited in Marshall & Marshall, 2012, pp. 188-190). In this example, a decision had to be made between honoring the meaning possibilities gathered in the past and building on them, adding to them; or starting a new relationship, with new possibilities and opportunities for actualizing meaning. Involving the “heart” and the “mind” was required to carefully delineate the areas of freedom and responsibility, the meaning of the moment in harmony with a greater sense of meaning in life. The client was asked to draw a balance sheet with the intent of discerning where the most meaning could be saved. The balance sheet had to be as clear and realistic as possible. Meaning could not be constructed or fabricated at the expense of suffering, although some unavoidable suffering was involved with both choices. Seeing a strong purpose, discovering a strong call, made one side of the scale weigh more than the other, and made the decision to stay with her husband and children bearable. Example 3 Sarah was torn between the option of celebrating Christmas with her elderly mother who was living alone, or with her husband. She felt a commitment to her mother, as she loved her, and it was a tradition in

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their family to celebrate Christmas together at her mother’s house. This year, however, she was longing to celebrate with her husband alone and to make it a special evening for just the two of them. There was a trip as well that she wanted to book. It was a “once in a lifetime opportunity,” but she was hesitating because this was the first time in her married life, for the past twenty years, that she would be away with her husband for a week. Using the method of common denominators, the therapist asked her to think about the people involved in this decision, and what each option would mean to them. Sarah’s husband, Ken, was very supportive and said he would not mind either way. However, Sarah suspected that Ken would enjoy the change. She said Ken was flexible and did not impose any decisions on her, which, admittedly, made it even more difficult for her to make up her mind. Her mother, she said, would be very happy to see them at Christmas time as “she always does a lot of preparations to make Christmas a big event.” Her siblings were also invited, and she said that her mother would probably be sad if they did not come this year. As for herself, she reported that she would be very happy and excited to celebrate with her husband. She would probably enjoy the celebration more with him than at her mother’s house. She would buy a nice present and she would attend out of a sense of duty. The therapist asked Sarah to reflect on the true meaning of Christmas. Sarah said it was to show and to share love. “Would it have been truly love that she gave to her mother?”—the therapist wondered. Admittedly, “No. I would have given her the gift. I still would have been resentful and try to pretend that I am happy.” “Love is something that cannot be demanded,” mused the therapist, “… and the most precious gift. Clearly, your resentment would not be in harmony with your definition of the spirit of the season as a celebration of love. Would there be some other way in which you could give real love as a gift to your mother?” Sarah came up with this alternative: She can write a card and phone her mother on Christmas Eve. She can talk to her siblings as well on the phone. She will spend the rest of the celebration with her husband. She and Ken can visit her mother upon their return. According to a second evaluation of who would be affected and in what ways, Sarah could see that “everybody would be happier in the end” with the second option. The real advantage for her would be that she could be guilt-free and not have to pretend. She envisioned that she

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could have an animated visit with her mother and have a long conversation about the trip. Her mother would also be happier to see her happy. The method of common denominators is helpful in complex situations for resolving value conflicts that require careful reflection and discernment. Many situations are not ideal for this method, but this does not have to prevent the person from choosing the best option available. The therapist does not demand or impose the “dos and don’ts” but guides clients to make decisions for themselves and to evaluate these decisions—“…are the options still meaningful in the light of the moment, or in the light of a greater sense of meaningfulness in life?” (Lukas, 2000b; cited in Marshall, & Marshall, 2012, pp. 191-192). Encouraging the Defiant Power of the Human Spirit The “defiant power of the human spirit” is an expression in Logotherapy and Existential Analysis that is used to point to the human spirit’s ability to face adversity and challenges with hope, faith, and courage (Frankl, 1984). The above listed methods are some of the ways in which uniqueness, choices, responsibility, response-ability, self-distancing and self-transcendence can be fostered in therapy with married couples. These are required strengths for resilience. “Name three things for which you are grateful to your partner today.” “Name three strengths your partner has demonstrated today.” “Name three things you love about your partner” are some general instructions for furthering positivity and caring in the marriage on a daily basis. “To what extent have I been present to my partner today? To what extent was I genuine?” “To what extent have I been supportive?” In answering these questions we have to bear in mind that meaningfulness in a relationship does not depend on ideal circumstances but on the ability of the partners to perceive and actualize meaning potentials. Couples may face challenges and transitions in many ways throughout the family life cycle. At each of these stages, a sense of meaning and values helps them to keep the direction and orient themselves toward their “true north.” Example 4 Leah and Sam have been married for eight years. They have a six yearold daughter who has been recently diagnosed with type one diabetes. Sam is an engineer. Leah works as an emergency nurse at a local

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hospital. She contacted the therapist for counselling as she was experiencing recurrent panic attacks. The attacks started shortly after the diagnosis of their daughter. Sam and Leah were seen together by the therapist. The couple reported that their daughter was receiving good care at the hospital and had started receiving insulin injections on a regular basis. She was reportedly in good spirits and making good adjustment. Leah, however, started to experience intense anxiety and flashbacks. Reportedly, the flashbacks had to do with children with injuries she had to treat in the past. Sam didn’t know how to approach this topic with Leah. He stated that he realized that her work can be very stressful at times, but he didn’t want to upset her by asking further work-related questions. In an existential dialogue, the therapist invited the couple to reminisce about what challenges they have handled in the past. In this context, Leah’s work was discussed as those meanings she actualized and saved which she and Sam can choose to honor and cherish: “For the past fifteen years, Leah has been involved with saving lives on a daily basis. She is a nurse with dedication, skill and expertise. Children who get a chance to be seen by her can be sure that they are in experienced hands. Sam is a steadfast companion. He is not a man of many words, but he has been a source of strength to the family.” After such sessions of honoring and affirming, the conversation led to the present: “What challenges does this couple face right now? What resources do they need that would help them cope?” Leah realized that her nursing background and skills can be very helpful to understand medical information about their daughter’s condition, her needs, and treatment. She started to appreciate that she had been overwhelmed with the demands of work and the adjustment to the new treatment schedule for their daughter. She voiced her worries about her fluctuating sugar levels and her fear of “…not being able to be in control of them.” When Sam and Leah were invited to dialogue about how the past few months have been, they realized that there have been “ups” and “downs” but it was all part of a “…learning process.” They were surprised to see that they actually learned new things about type one diabetes and although there was “still a lot to learn,” they were on their way of managing the disease, enabling their daughter to have a happy and healthy childhood, and ensuring the best possible future for her. They discussed ways of relaxation, sharing the workload at home, and a healthier workhome balance.

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By the end of the first year in counselling, Leah sighed a deep sigh of relief: “…the panic attacks have not returned during the past six months.” She felt listened to, validated, and understood. Her hopes were strong and there was wisdom in her words as she reflected: “Sam and I always wanted to give to others. We did not anticipate that our skills will be needed right at home. However, we are grateful to life that we can be there for our daughter and I feel that, through this experience, both of us have gained insights that can enrich our work. We have become more sensitive individuals and stronger as a couple. There is still a lot to do and every day brings it’s own challenges. But we are a team and we know that we can count on each other, no matter what happens.” Logotherapy and Existential Analysis’s methods are ideally fitted to help the human spirit’s yearning for meaning. In this search, the Logotherapist aids the couple in scanning the past and to (1) honour those meanings that they have deposited in the “granary,” that now “…no one and nothing can remove from the face of the earth” (Frankl, 1978, pp. 107109; 2014). Therapists also help couples to (2) discern and actualize meaning potentials available in the present. Finally, they accompany the couple to (3) notice possible meaning potentials awaiting in the future (Lantz, 1993; 1995; Marshall, & Marshall, 2013). In the case of Leah and Sam, such future meaning possibilities may involve becoming advocates for ongoing research into the treatment of diabetes; joining a support group; organizing educational opportunities for the community; reaching out to other parents, etc.—whatever they may decide to do, Leah and Sam now have first-hand experience in the treatment of type one diabetes and their main source of inspiration is their own daughter. Conclusion Logotherapy’s methods can be easily combined with other models of couple therapy (i.e., the Gottman Method, principles from Positive Psychology, Mindfulness, Cognitive-Behavioral Therapy, Solution-Focused Therapy, Brief Therapy, Coaching, etc.) “…to help couples become better friends, learn to manage conflict, and create ways to support each other’s hopes for the future” (Gottman, 2015). Such principles help couples develop a shared vision, roadmaps for a shared mission, enhance their intimacy, encourage being present, being authentic, genuine, and

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appreciative of each other, practice healthy conflict-resolution, relaxation and communication patterns. What is unique about Logotherapy is the affirmation of meaning under all circumstances and its clearly stated view of the human being as a three-dimensional entity. Thus, the recognition that, by the virtue of an extended circle of responsibility from the self to others, the married couple builds, lives, and leaves a legacy of values actualized in the search for meaning. Reflection Questions 1) Imagine a situation in your own life for which the “method of common denominators” exercise may be helpful. Based on your knowledge of this exercise from this chapter, carry it out. What did you discover? 2) Apply the “mountain-range exercise” to your own life. What does your mountain look like? How might this be helpful for you? Glossary Agape: Spiritual love, based on shared ideas, ideals, values, hopes, dreams, and meaning. Attitudinal Values: The response we give to those events which we have little or no control over. Creative Values: Things we give to the world. Eros: Love based on physical attraction. Existential Analysis: Used in the therapy process to discern the areas of fate, vulnerabilities, and areas where individuals may have limitations due to illness, developmental conditions or circumstances. Existential Frustration/Vacuum: Occurs when meaning cannot be seen or the search for meaning is ignored or stifled. Experiential Values: What we take from the world. Freedom of Will: The foundation of resilience and well-being in the face of adversity. Philia: Psychological love, encompassing feelings, thoughts, goals, perceptions, and cognitions. Spirit: The seat of metaphysical resources and capacities, such as conscience, the capacity to love beyond the physical, humour,

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optimism, faith, hope, the capacity for self-distancing and self-transcendence. Trans-Subjective Reality: Something that is perceived, discovered and grasped, rather than constructed by human will. Will to Meaning: The fundamental human motivation is the search for meaning. References Bill C-38 (2005). Parliament of Canada. Retrieved from: www.parl.gc.ca/ About/Parliament/LegislativeSummaries/bills_1s.asp?ls=c38&Parl=38& Ses=1 Ernzen, F. (1991). Frankl’s Mountain Range Exercise. The IFL, 13(2), 133-134. Gottman, J.M. (2015). The Gottman Method. Retrieved from: www.gottman. com/about-gottman-method-couples-theray/ Frankl, V.E. (1967). Psychotherapy and existentialism. New York, NY: Simon and Schuster. Frankl, V.E. (1975). Der Anthropologische Grundlagen der Psychotherapie [The Anthropological Foundations of Psychotherapy]. Vienna, Austria: Huber. Frankl, V.E. (1978). The unheard cry for meaning. Psychotherapy and humanism. New York, NY: Simon and Schuster. Frankl, V.E. (1984). Man’s search for meaning. New York, NY: Simon and Schuster. Frankl, V.E. (1986). The doctor and the soul. From psychotherapy to Logotherapy. New York, NY: Random House. Frankl, V.E. (1994). Logotherapie und Existenzanalyse [Logotherapy and Existential Analysis]. Muenchen, Germany: Quintessenz. Frankl, V.E. (1993). Theorie und therapie der neurosen [Theory and Therapy of Neuroses]. Muenchen, Germany: Reinhardt. Frankl, V.E. (1996). Der mensch vor der frage nach dem sinn [Confronted with the Question of Meaning]. Muenchen, Germany: Piper. Frankl, V.E. (1996b). Zeiten der enthscheidung [Times of Decision]. Freiburg, Germany: Herder. Frankl, V.E. (2000). Man’s search for ultimate meaning. New York, NY: Basic Books/Perseus. Frankl, V.E. (2004). The doctor and the soul. Paperback Edition. London, UK: Souvenir. Frankl, V.E. (2006). Man’s search for meaning. Boston, MA: Beacon Press. Frankl, V.E. (2014). The will to meaning. Expanded Edition. New York, NY: Plume. Lantz, J. (1982). Meaning in family therapy. The IFL, 5, 44-46. Lantz, J. (1987). Franklian family therapy. The IFL, 10, 22-28. Lantz, J. (1993). Existential family therapy. Using the concepts of Viktor Frankl. Northvale, NJ: Jason Aronson, Inc. Lantz, J. (1995). Frankl’s concept of time: Existential psychotherapy with couples and families. Journal of Contemporary Psychotherapy, 25, 135-144.

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Lukas, E. (1982). The “birthmarks” of paradoxical intention. The IFL, 5, 20-24. Lukas, E. (1991). Meaning-centered family therapy. The IFL, 14, 67-74. Lukas, E. (1995). Psychological ministry. Unpublished Manuscript. Lukas, E. (1997). Unpublished lecture notes. OISE/UT Lukas, E. (2000). Logotherapy textbook. Toronto, ON: Liberty Press. Lukas, E. (2000b) Unpublished lecture notes. Fuerstenfeldbruck, Germany: South German Institute of Logotherapy. Lukas, E. (2012). Familiengluck: Verstehen-Annehmen-Lieben [Healhty Families: Understanding-Accepting-Loving]. Muenchen, Germany: Topos. Lukas, E. (2013). Ausbildung in der originaeren Logotherapie nach Viktor E. Frank. I. [Training Manual in Viktor E. Frankl’s Logotherapy. Volume I.] Bamberg, Germany: Elisabeth Lukas Archives. Lukas, E. (2014). Meaning in suffering. Second edition. Charlottesville, VA: Purpose Research. Lukas, E. (2015). The therapist and the soul. Charlottesville, VA: Purpose Research. Marshall, M. & Marshall, E. (2012). Logotherapy revisited. Review of the tenets of Viktor E. Frankl’s Logotherapy. Ottawa, ON: Ottawa Institute of Logotherapy. Marshall, M. & Marshall, E. (2013). Healing ministry. Ottawa, ON: Ottawa Institute of Logotherapy. Marshall, M. & Marshall, E. (2014). Perpetuum mobile. A personal global concern. Ottawa, ON: Ottawa Institute of Logotherapy. Marshall, M. & Marshall, E. (2015). Spiritual psychotherapy. The search for lasting meaning. Ottawa, ON: Ottawa Institute of Logotherapy. New Revised Standard Version Bible (2012). New York, NY: British and Foreign Bible Society.

Note The case examples are likely situations based on the authors’ experience. Any identifying information has been altered or omitted, and any resemblance with a real case is pure coincidence. References and credits have been given where appropriate.

Chapter 2

The Spiritual Foundation for a Healthy Marriage and Family Paul T. P. Wong & Lilian C. J. Wong

Among all the earthly blessings available, marital bliss must be ranked among the top. Most people, at a certain point in their lives, have dreamed of a happy marriage and even a happy family as a major part of an ideal life. Romantic books and movies have moved millions of people to tears and inspired them to dream of the kind of love that can magically transform their lives. On a personal level, many readers can still remember those happy days when they first fell in love with a specific person, believing that they had found the right person to be a life partner. They may also remember the euphoria of intimate moments and the pain of separation. Marriage was a necessary next step simply because a life without the other was too painful. During the honeymoon period, they shared big dreams for a happy future. The Puzzle of Marital Bliss During the heady days of passionate love, couples can be happy with only bread and water. No difficulty can separate them. Together, they can face the whole world and overcome any problem. Having each other already fills their lives with happiness. Unfortunately, such passion can eventually wane, and a harsh reality takes over. All the pledges of never ending love, all the happy memories of passionate love, cannot withstand the onslaught of reality. Petty squabbles soon grow into heated arguments. Small annoyances escalate into major conflicts. Scolding each other becomes a way of relating to each other. In the past, they could not have enough of each other, but now they cannot stand each other. What has transpired in these once happy marriages? What contributes to the eventual divorce in about half of all unions?

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The Parenting Paradox A similar disappointment may also happen to parents. Many couples eagerly await the arrival of their firstborn. In their vision of a happy life, they dream about having children who will bring them joy and pride, and carry on their genes to the next generation. Their children may even take care of them in their old age. Parents are sometimes willing to sacrifice everything to make sure that their kids are happy and successful. Unfortunately, despite these parents’ best intentions and efforts, children do not always turn out the way they expected. Often, parents feel frustrated and helpless, as their teenage children grow distant and are no longer willing to listen to them. Many teens prefer to hang out with friends and do fun activities, such as partying, drinking, even experimenting with illicit drugs. They appear to have no career plans, no purpose, no ambition, and no interest in anything except what gives them instant pleasure. We have had clients who have desperately asked, “What have we done wrong?” “How can we direct our children toward the path of having a good education and getting a good job?” When these desperate parents try to correct their wayward children, the children may either turn a deaf ear or threaten to leave home or attempt suicide. Thus, for many people, the dream of having a happy marriage and family has turned into a nightmare. Instead of being a source of meaning and happiness, being married with kids has become a constant source of stress and problems. What are the common factors responsible for such heartbreak? Leo Tolstoy (1877/2004) once said in Anna Karenina: “Happy families are all alike; every unhappy family is unhappy in its own way” (p. 2). Indeed, there are many factors contributing to such disappointments, which may range from infidelity and poverty to sickness and addictions. In this chapter, we examine the institute of marriage and family, identify some of the problems, and propose a spiritual solution. The Importance of Marriage and Family Marital love can indeed be a source of strength and comfort, even when the beloved is physically absent. During his darkest days in a Nazi concentration camp, Dr. Viktor Frankl turned his thoughts to the image and memory of his wife, who, unbeknownst to him at the time, was

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already dead. At that point, an epiphany dawned on him: “The salvation of man is through love and in love. I understood how a man who has nothing left in this world still may know bliss, be it only for a brief moment, in the contemplation of his beloved” (Frankl, 1985, p. 57). Research has indeed shown numerous marital benefits. For example, married people enjoy higher well-being and less stress than persons who are single (Coombs, 1991). Children with intact parents experience higher levels of well-being than children in other family arrangements (Parke, 2003). Married people also live longer and enjoy better mental and physical health (Ross, Mirowsky, & Goldsteen, 1990). These findings are consistent with those on the importance of intimate relationships in happiness and having a meaningful life (Wong, 1998a). Deci and Ryan (2000) also emphasize that our ability to function fully depends on meeting “the need for relatedness—the need to love and be loved, to care and be cared for” (p. 231). Marriage involves the most stable intimate relationship and can meet people’s deepest yearning for love and relatedness. According to sociology research (Anderson & Taylor, 2009; Newman, 2009), family is the primary institute for procreation and socialization. Narvaez (2013) has documented anthropological evidence that caring for the young is the basis for producing good and useful adults. De Waal’s (2006) research led him to conclude that family solidarity plays a key role in contributing to the success of the individuals and the survival and thriving of their offspring. Thus, from the perspective of sociology, psychology, anthropology, and evolutionary biology, the family has the fundamental purpose of creating and raising children for the survival of the human species. Does Marriage Make You Happy? Does marriage make you happy? The answer is complicated because, like life itself, marriage means more than just happiness—it necessarily involves sacrifice for the other and navigating the highs and lows of married life. Besides, there are different kinds of happiness, from hedonic to eudaimonic ([Hedonic happiness: Increased happiness leads to decreased pain; Endaimonic happiness: Happiness through reaching human potential] Waterman, 2008; Wong, 2011). Daniel Gilbert observes that “it’s not marriage that makes you happy; it’s a happy marriage that makes you happy” with an addendum stating

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that “marriage seems to buy you a decade or more of happiness” (Munsey, 2010). Gilbert (2006) also found that people are not very good at knowing what will make them happy; therefore, disappointment is often inevitable. Passionate love is nature’s trick to glue two individuals so intensely in affection that they want to marry. Many weddings are the same in their joviality and positive expectations, but most couples will find out sooner or later that married life is not immune from trials and tribulations. When the euphoria of passionate love gives way to the realities of daily routines, irritations, and conflicts, the foundation of the marriage will be tested. Married life calls for constant adjustment and mutual forgiveness in order to stay on course. It always entails hard work and sacrifice, especially after children are born. Marriage therapist Israel Charny (1992) reminds us that we are imperfect people living in an imperfect world. Therefore, it is impossible that two imperfect people together can create perfect happiness. From the perspective of Second Wave Positive Psychology (PP 2.0; Ivtzan, Lomas, Hefferon, & Worth, 2016; Wong, 2011), pure happiness is a myth. A more realistic picture is that happiness co-exists with daily stress and the dark side of life. Our happiness depends to a large extent on our ability to manage our negative emotions and the inevitable problems in life. Another important point is that the primary function of marriage and family is not happiness but the loving-kindness, connectiveness, and self-transcendence needed for survival, personal growth, and flourishing—not just for ourselves, but also for others (Wong, 2016a). Marital Problems Working closely with attractive people of the opposite sex offers many temptations to reignite the spark that makes you feel alive again, especially when married life is full of troubles. Frequent long-distance traveling away from home also provides opportunities for distractions in another love object. More than fifty percent of married couples have had affairs; infidelity is perhaps the number one marriage killer (Infidelity Facts, 2006); even an affair of the heart can undermine one’s marital relationship. Economy is another major culprit for marital woes. Most couples fight over money matters—from the lack of money to pay the bills to disagreements on how to spend the available funds. Tempers flare when

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financial pressure mounts. Domestic violence typically increases during economic recession (Renzetti & Larkin, 2009). Separation or divorce may then result from this situation (Haaken, 2010). In Canada, about one-third of first-time marriages end up in divorce (Human Resources, 2010). In the United States, the divorce rate is about fifty percent (Divorce Magazine, 2010). For those who stay married, about 60% are unhappy (Daily Mail Reporter, 2010). For many couples, married life is filled with tension and conflicts. Some couples simply co-exist for the sake of their children or due to financial constraints. In most cases, marital problems are due to the accumulation of many small things, such as irritating habits, unfair and unnecessary criticisms, and/or miscommunication and misunderstanding. These annoyances were overlooked or tolerated during the days of courtship but become increasingly unbearable when the magic of romance has died. Enemies of Marriage According to Gottman (1998), the top four “bad habits” of unsuccessful marriages are as follows: (1) more negative emotions than positive emotions (the ratio of negative to positive in good marriages is 1 to 5); (2) the Four Horsemen of the Apocalypse (criticism, defensiveness, contempt and stonewalling); (3) the failure of repair attempts; and (4) negative perception or attribution of interactions. According to Wong (2003), the ten common enemies of marriage are: 1. Criticism: Couples often try to correct each other and want to transform each other into one’s image of an ideal husband or wife. Such efforts seldom work. Criticism, when it is unnecessary or unfair, will only provoke the partner and trigger a fight. 2. Blaming: Blaming the spouse for any existing problem only makes the problem worse by aggravating the partner. 3. Misattribution: Attributing a problem to the spouse’s bad personality or malicious intent can escalate conflict and cause damage to the relationship. 4. Possessiveness: Love is by nature jealous and possessive. However, excessive possessiveness can suffocate the spouse, especially when it is due to insecurity or anxious attachment. 5. Negligence: Negligence occurs when one takes the marital relationship for granted. When the demand of work becomes overwhelming, it is easy to neglect the other person’s emotional needs.

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6. Power struggle: When ego is front and center, and no one has learned the lesson of surrendering one’s pride for the sake of harmony and love, conflicts become inevitable. The issue of control can range from child rearing to the best way of doing certain things. 7. Lack of respect: Most of the above problems can be avoided when couples simply treat each other with common courtesy and respect. Dismissive remarks and frequent putdowns will push the spouse away. 8. Disengagement: Couples can grow apart because of divergent interests or a widening gap in education and maturity over the years. Without any shared purpose or goal, partners may drift further and further apart. 9. Lack of communication: Communication means more than just talking. For some couples, their most common mode of communication is arguing or scolding. Quality communication involves transmitting useful information and understanding each other’s intention and needs. 10. Unresolved issues from the past: Often, couples carry into their marriage emotional baggage that can be traced back to childhood or early traumas. Past issues can be related to wounded ego, inner pains, or repressed anger, which may manifest themselves inappropriately. The perfect marital storm does not happen by chance or instantly. In most cases, it is due to many small problems that are allowed to brew for years, until all the negative elements converge into a monstrous storm. Timely marital counselling can be beneficial. When marital problems are not addressed and repaired, they can eventually lead to divorce. What Contributes to a Healthy Marriage? Just as a solid house needs to have a solid foundation and frame, so does a healthy marriage. A solid foundation typically includes friendship, deep mutual understanding, shared values and beliefs, and a commitment to contribute a hundred percent to each other. The hidden dimension to the marital foundation has to do with spiritual values and shared symbolic meaning and purposes beyond survival (Gottman, 1998). A strong marital house consists of the positive things couples do for each other in their daily interactions. These include: (1) the willingness to make beneficial changes and lose part of oneself in order to please the other; (2) being kind rather than being right; (3) being generous in

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forgiving and helping each other; (4) communicating frequently; (5) settling disagreements quickly and fairly, and (6) giving oneself for the well-being of the other. A little reflection will reveal that the above practices are possible only when there are spiritual values, especially agape love, in each other’s lives. Gottlieb (2012) has identified five cardinal spiritual values: 1. Mindfulness: Awareness of the present moment. 2. Acceptance: Accepting suffering as an inherent aspect of human existence. 3. Gratitude: Being thankful for life as a gift 4. Compassion: Having a sense of shared responsibility for injustice throughout the world 5. Agape or philia love: Possessing a form of love that is non-possessive and being kind and caring towards others. We also suggest that strong marriages are based on these spiritual values: 1. Self-sacrifice and self-transcendence; 2. Giving each other grace in forgiveness and overlooking small things; 3. Practicing empathy and compassion daily; 4. Serving the common good and a higher purpose; and 5. Valuing integrity and loving-kindness more than pride. The above contribute to a healthy marriage and indicate that spirituality is important not only for our lives, but also in building a healthy marriage and family. We now examine more closely why spirituality is such an essential cornerstone. The Importance of Spirituality Religiousness and spirituality play an important role in people’s lives. According to a Gallup (2016) survey, almost 9 out of 10 people in America still believe in God. Census data show that about half of Canadian adults regularly engage in religious practices (Clark & Schellenberg, 2008). Recent research has shown an increasing proportion of people who experience spirituality without any religious affiliation (Pew Research Center, 2012). The differences and similarities between religion and spirituality have been described in detail in the literature (Hill et al., 2000; Wong, 1998a). Typically, religion involves organizations, dogmas, rituals, observance of special occasions, and group activities, which are not necessary for the

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practice of spirituality. Religion represents institutionalized spirituality. We take the position that whether people believe in a deity or not, spirituality is an inherent dimension of being human. A significant segment of the non-religious population are either searching for or experiencing spirituality (Pew Research Center, 2012). For both religious and nonreligious people, spirituality represents a unique aspect of being human. It is possible for individuals to be religious without being spiritual; they take on the outward practice of a religion as a cultural being, without experiencing spirituality at the phenomenological level (Elkins, Hedstrom, Hughes, Leaf, & Saunders, 1998; Hill et al., 2000). Recently, in a presentation at the Annual Convention of the American Psychological Association, Wong and Wong (2015) identified seven dimensions of non-religious spirituality, as follows: 1. Spirituality as a Dimension of Human Nature Existential therapist Emmy van Deurzen considers spirituality as the core of human existence, as shown in Figure 1 (van Deurzen & Adams, 2010). More specifically, she proposes that the spiritual dimension refers to one’s innermost core, consisting of one’s values, beliefs, worldviews, and meaning or purpose of life. It is concerned with the big metaphysical questions of life. According to Pargament (2001), spirituality reflects a distinctive and irreducible human motivation.

Figure 1. Four dimensions of life.

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2. Spirituality as the Yearning for Meaning Frankl (1985) also considers spirituality as a dimension of personhood in addition to the physical and psychological dimensions. Frankl’s unique contribution is his emphasis on the will to meaning as a primary human motivation that seeks meaning and self-transcendence—seeking to step out of oneself to serve someone bigger than oneself. This uniquely human motivation originates from the spiritual dimension. We become truly human when we become aware of our responsibility to serve others. Wong (1998a) also emphasizes that spirituality is being sensitive to the meaning dimension of life—being concerned with seeking and meeting one’s need for meaning. Consistent with Frankl, spirituality is increasingly conceptualized as meaning seeking or meaning making by researchers (Hill et al., 2000; Paloutzian & Park, 2013; Pargament, 2001). 3. Spirituality as a Source of Morality Frankl (1985) describes intuitive conscience as a “meaning organ”—the moral and ethical aspect of the human quest for meaning. Our responsibility to do the right thing, to pursue the right dream, needs to be guided by our conscience and enduring values. Thus, spirituality represents a noble and moral human aspiration. Wong (2016b) pointed out that one’s moral compass consists of a sense of personal responsibility, innate capacity for moral reasoning, and cultural norms of moral vision. 4. Spirituality as a Yearning for the Sacred Emmons (2005) conceptualizes spirituality as goal strivings towards the sacred or ultimate concern; his research has shown that such strivings are related to one’s well-being. What is considered sacred may be a place, an object, or a person that was considered as most valued (Hill et al., 2000). If marriage vows are regarded as being sacred, then divorce might be rare. 5. Spirituality as a Yearning for Oneness and Connectiveness Maslow (1971) revised his hierarchy model of human needs by adding self-transcendence as the capstone of motivation beyond self-actualization. Self-transcendence represents the human need to experience oneness with the greater whole, the higher truth, or the unity of all things.

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De Souza (2016) conceptualizes spirituality in terms of a relational continuum from an individual experience of union with the other to becoming part of a much greater whole. In a similar way, Aron, Lewandowski, Mashek, & Aron’s (2013) self-expansion model of love conceptualizes love as the process of expanding oneself by including others; this expanding connectiveness grows from marriage, family, and community, to the spiritual or transpersonal realms. Thus, love is the glue that provides the bond for connectiveness. 6. Spirituality as a Broad Vision for Universality and Brotherhood (Transcending Cultural Differences) Unlike religion, which is closely linked to specific cultures, spirituality implies universal brotherhood which transcends cultural and ethnic boundaries. In Fowler’s (1981) fifth stage of Conjunctive Faith, individuals have the ability to engage in non-defensive, mutual dialogue with clients or supervisees whose faith traditions differ from their own. In the sixth stage, individuals finally reach a level of spiritual maturity that envisions a universal community that transcends different faith traditions. 7. Spirituality as Intelligence (Practical Wisdom for Daily Living) Emmons (2000) presents evidence that spirituality consists of a set of capacities and abilities that enable people to solve problems and attain goals in their everyday lives. Such abilities have the same criteria as intelligence. He identifies five spiritual capacities: (1) the capacity for transcendence; (2) the ability for higher states of consciousness; (3) the ability to invest everyday activities, events, and relationships with a sense of the sacred; (4) the ability to utilize spiritual resources to solve problems in living; and (5) the capacity to engage in virtuous behaviours, such as forgiveness, gratitude, and compassion. We propose that altogether the above seven characteristics define non-religious spirituality as the core of human experience and wellbeing. In this chapter, we want to specifically highlight love and meaning as the two main contributors to a healthy marriage and family. The Centrality of Love Love is at the heart of spirituality, not passionate love (eros), but spiritual love (agape) and brotherly love (philia). In any marriage,

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passionate love eventually becomes compassionate love. Hatfield and Rapson (1994) define compassionate love in terms of feelings of mutual respect, trust, affection, and commitment, as different from the much more intense passionate love, which has a strong component of sexual attraction. Enduring marriage has to be based on companionate love, which includes elements of agape and philia. Such love also fulfills Rogers’ (1961) criteria of empathy, genuineness, and unconditional positive regard, which provide the necessary and sufficient condition for becoming fully functioning human beings. When couples totally accept each other as they are, without criticizing and correcting each other’s shortcomings, then they are free to make positive changes. The best portrait of agape love can be found in the book of 1 Corinthians in the Bible: Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always hopes, always perseveres. Love never fails. (1 Corinthians 13:4-8, The New International Version)

In sum, love is the giving of ourselves in caring for others, generously and compassionately, in spite of occasional negative feelings and thoughts toward them. This law of love demands that we love others unconditionally and unselfishly. The Love Test To assess the presence of agape in one’s life, Wong (2003) developed the following love test: Do you habitually and consistently: (a) Engage in deeds of kindness? (b) Embrace those different from you? (c) Consider other people’s feelings? (d) Have other people’s best interest in mind? (e) Help others without expecting any return? (f) Show gratitude and repay kindness? (g) Forgive those who have hurt you? (h) Treat others with unconditional positive regard? (i) Apologize and make amends whenever you have hurt others? If you have difficulty saying “Yes” to most of the above questions, you may have a deficiency in agape and you may need to cultivate this life-transforming virtue. Gerald Jampolsky (2011), in Love is Letting Go of Fear, stated that we can experience the freedom to love only when we are “motivated to experience a personal transformation toward a life of giving and love, and away from getting and fear” (p. 17).

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Practical Love All the religious teachings, all the Bible verses, all the philosophical understandings of the virtue of love, and all the knowledge of scientific research on love would not make this world a kinder, gentler place, unless we internalize the value of love and practice it. There are many little things we can do to cultivate agape—we can practice random kindness and become sensitive towards other people’s feelings and well-being. We may even learn to love those who have hurt us and caused us troubles. When our lives are governed by loving-kindness, our marriages and families will be filled with peace and joy in spite of living with the inevitable stress and troubles. From an existential perspective, we need to accept the dark side of human existence and the inevitability of conflicts and problems (van Deurzen & Adams, 2010). Denial, defense mechanisms, and pride all conspire to make it difficult for us to accept our own limitations and our partner’s weaknesses. Acceptance means more than mere recognition of an unpleasant reality. It also involves the willingness to confront the problem and repair the damage. The scope of acceptance includes accepting (1) personal responsibility for marital problems; (2) each other’s limitations, flaws, and weaknesses, (3) your spouse’s lack of understanding of your needs and frustrations; (4) continuous financial difficulties and an uncertain future; (5) the mounting pressures of raising a growing family; and (6) the fact that your marriage is broken and in desperate need of repair. Commitment to Put Love First Repairing any broken relationship is an uphill battle and demands commitment. One area that needs immediate change is to increase positive communication and decrease negative communication. Criticism, blaming, belittling, and scolding are destructive. Positive statements of appreciation, validation, and caring are essential in strengthening relationships. Make a commitment to “put love first.” Let the spouse know that he or she always ranks number one in your life. Show your commitment each day in doing small things, such as (1) showing kindness every day; (2) expressing appreciation and validation whenever possible; (3) doing something special for your spouse once in a while; (4) catching yourself when you entertain negative thoughts about your spouse; (5) giving each

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other the benefit of the doubt; and (6) valuing each other’s company and contributions to the relationship. In a time when marriage is under attack from many fronts, determined efforts are needed to put love back into our relationships in order to build healthy marriages and families. Mother Theresa’s life gives us some reason to be optimistic. As an embodiment of compassionate love, Mother Theresa (1995) has this advice for us in her book A Simple Path: We must grow in love and to do this we must go on loving and loving and giving and giving until it hurts—the way Jesus did. Do ordinary things with extraordinary love: little things like caring for the sick and the homeless, the lonely and the unwanted, washing and cleaning for them. (p. 99)

From the perspective of PP 2.0, love is more likely to be found in the midst of suffering and pain. When we journey down the simple path of love with Mother Teresa, we may be surprised by the discovery that love in all its purity can only be found in embracing our own brokenness and our need for healing and in accepting the brokenness in others. It is in the practice of love that we find our redemption and wholeness. It is only proper to complete our discussion on love with the example of Jesus Christ. After a brief life of caring for the helpless and brokenhearted, he finally made the ultimate sacrifice for all humanity so that we can experience the grace of following his paths. Where love rules, there is no room for hatred, hostility, resentment, pride, or jealousy. When there is love in a home, there can be joy and harmony. A Meaning-Centered Approach to Marriage and Family Spirituality has become increasingly defined in terms of the human search for meaning and self-transcendence (Buck, 2006; Frankl, 1985; Park, 2007; Wong, 1998b). In this section, we define meaning in terms of PURE: Purpose, Understanding, Responsible Action, and Enjoyment (Wong, 2012). We intend to show how these four components can help strengthen the foundation for a healthy marriage and family. Purpose According to Gottman (1998), the highest level of a successful marriage is shared meaning and purpose, expressed in narratives, myths, values, and life goals. For van Deurzen and Adams (2010), one of the aims of

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Existential couple work is to focus on shared meaning and purpose, expressed through “joint narrative.” Mutuality is based on a shared meaning and purpose that still allows space for individuality and personal growth. Each partner is free to have his or her dreams and aspirations, but there has to be substantial common ground. It is important to have joint projects, especially when there is a significant spiritual, cultural, or age difference in the marriage. Wong (2010) provides a checklist for mutuality of purpose. Here are some sample items: (1) What did you want to accomplish together when you first got married? (2) What do you want to accomplish together now? (3) Do you share the same beliefs or philosophy of life? (4) Do you share the same core values and moral principles? (5) Do you share the same views on how to best raise children? (6) How many joint projects do you have? (7) Do you have similar ideas in planning for the future? (8) What is your ideal of a fulfilling life? (9) What is your spouse’s ideal of a fulfilling life? (10) Do you share the same priorities in planning for the future? A lack of common purpose likely leads to conflict and drifting apart. Fortunately, it is never too late to cultivate areas of common interest and shared life goals. Out of billions of people, marriage is not a happenstance. Two individuals are brought together for some purpose. Couples benefit from being on the same side and striving towards the same life goal, if they want to survive and flourish in a difficult and often hostile world. Purpose not only provides a direction for our lives, but also serves to energize us. According to Klinger (1998, 2012) and Emmons (1999), it is the striving towards some worthy goals that keeps us healthy and happy. Remember that not all life goals are equal. Wong (2016a) has made the case that selfish goals, such chasing after money and pleasure, often lead to disillusion and self-destruction, whereas self-transcendent goals of contributing to others lead to meaning, virtue, and happiness. When young people seek pleasure and excitement to avoid boredom, parents can, with their own example, demonstrate that there is more to life than happiness. Parents need to inspire their children to do something wonderful and meaningful with the one and only life they have. Instead of pressuring them to study hard and get a good paying job, parents need to challenge them to develop their interests and potentials not only to make a living but also to make a difference. Understanding Understanding represents the cognitive aspects of meaning in life. It involves one’s assumptions, worldviews, and beliefs about God, the

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world, and one’s place in the world. It also involves cognitive appraisal and attributions of specific events or situations. Any relational success, especially in marriage, depends on mutual understanding. Without it, almost everything one does or says can be misinterpreted, leading to conflict. However, understanding requires empathy, knowledge, and a willingness to listen. The more you know your spouse and his/her world, the easier it is to understand what he/she is going through. Wong (2010) provides a list to check your understanding of yourself and your spouse. Here are a few test items: (1) Do you understand what aspects of you are annoying to your spouse? (2) Do you understand what aspects of your spouse are annoying to you? (3) What is your spouse’s most pressing emotional need right now? (4) What are the main sources of frustration for you? (5) What are the main sources of frustration for your spouse? (6) Do you know each other’s blind-spots? Wong and Wong (2013) also emphasized the importance of active listening in authentic communication. To reduce miscommunication, we need to learn not only to listen with our ears and eyes, but also with a compassionate heart, an open mind, and with the spirit. To listen with the spirit means to be attuned to each other’s silent cry for meaning and understanding. To communicate at the spiritual level is to understand each other’s spiritual essence and inner space. By practicing active listening at all five levels—ear, eye, heart, mind, and spirit—couples will be able to engage in clear and congruent communication and develop new ways to relate to each other. Understanding with empathy does not mean blind endorsement of unreasonable demands. Problems in a relationship may occur when one member complains, “You just don’t understand.” The subtext of such complaint often is, “If you understand me, you will give me what I want, and do what I want you to do.” There are two ways to counteract such accusations. The first is to ask for clarification, “Please help me understand.” Another way is to shift perspectives: “If you were I, how would you respond to your complaint?” Responsible Action Ultimately, what makes life meaningful is your action—it is not about what you think, but what you actually do with your life in accordance with your purpose and understanding. Until one assumes personal responsibility for correcting one’s mistakes and making appropriate choices, one cannot move forward.

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An important point in marriage is that both persons have the responsibility to choose actions that make the relationship work. A relationship is an entity in itself that transcends individual needs. Marriage at its best is fragile. There are just too many pressure points and perils threatening its existence. Both parties are responsible for protecting and nurturing it. Under normal circumstances, it is helpful for both parties to share responsibility fairly. Uneven responsibility eventually leads to dissatisfaction and conflict. However, there are times when it is necessary for one partner to make a larger sacrifice than the other. For example, when one partner is sick or unemployed, the other partner often takes on a much greater share of responsibility. Since no human is perfect, we are bound to make mistakes along the way. Resentment and denial of responsibility can exacerbate a problem. Ruth Bell Graham aptly suggests that “a good marriage is the union of two good forgivers.” The courage to confess and apologize is just as important as the generosity in forgiving. Here is a checklist to assess responsible actions in a marriage according to Wong (2010). How many of the following are applicable to you? (1) Have you kept most of the promises you have made? (2) Do you feel that you can depend on your spouse most of the time? (3) Can your spouse depend on you most of the time? (4) Do you frequently forgive each other’s mistakes? (5) Do you make amends for your mistakes? (6) Have you ever sacrificed your self-interests in order to meet your spouse’s needs? (7) In terms of priorities, where does your spouse rank? Enjoying the Fruit When we meet the above three criteria, we will likely enjoy the benefits of marriage and family. However, this does not mean that we will be happy all the time—nobody can be happy all the time. In marriage, there will always be rough patches to go through and problems to be resolved. A spiritual orientation enables us to navigate the ups and downs of life better. In old age, we will be grateful that we have a loving and dependable partner to share the last stretch of life’s journey. If we are fortunate enough to have raised caring children, they can be a source of comfort and joy in our old age. However, it takes determination and discipline to practice the principles of PURE in our married life. But it is worth it. In the process of practicing PURE, we will grow and mature as individuals, and our marriage and family will be our blessings.

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Conclusion Life goes on, with its ups and downs, twists and turns. Along the way, one can easily get lost, stuck, or derailed by one’s own folly or by fate. It can be very hard for anyone to go through life without family and friends. In the midst of accelerating change and unrelenting stress, ideally, the home provides a safe haven, where members can draw strength and access resources to face all the inevitable challenges on life’s journey. Unfortunately, for many families, home has become a battleground, where conflict dominates the everyday environment. In this chapter, we have made the case that spirituality can provide a strong foundation to build a healthy marriage and family. What is unseen can be more valuable in our lives; enduring treasures can only be found in the invisible spiritual realm. Home can indeed become the best place to be, when it is governed by spiritual values. In the final analysis, for married and family life to survive and thrive, we all need a healthy dosage of love, trust, forgiveness, shared purpose, and selftranscendence—virtues rooted in our spirituality. Reflection Questions 1) In what ways can spirituality provide a strong foundation to build a healthy marriage and family? 2) In what ways might mindfulness and gratitude contribute to healthier relationships? Glossary Agape: Spiritual love Eros: Passionate love Intuitive conscience: A “meaning organ”—the moral and ethical aspect of the human quest for meaning. Self-transcendence represents the human need to experience oneness with the greater whole, the higher truth, or the unity of all things. Spirituality: The human search for meaning and self-transcendence Philia: Brotherly love PURE: Purpose, Understanding, Responsible Action, and Enjoyment.

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References Andersen, M.L., & Taylor, H.F. (2009). Sociology: The essentials. Belmont, CA: Wadsworth. Aron, A., Lewandowski, G.W., Jr., Mashek, D., & Aron, E.N. (2013). The selfexpansion model of motivation and cognition in close relationships. In J.A. Simpson, & L. Campbell (Eds.), The Oxford handbook of close relationships (pp. 90-115). Oxford, UK: Oxford University Press. Buck, H.G. (2006). Spirituality: Concept analysis and model development. Holistic Nursing Practice, 20(6), 288-292. Retrieved from http://journals. lww.com/hnpjournal/Abstract/2006/11000/Spirituality__Concept_Analysis_ and_Model.6.aspx Charny, I.W. (1992). Existential/dialectical marital therapy: Breaking the secret code of marriage. New York, NY: Brunner/Mazel. Clark, W., & Schellenberg, G. (2008). Who’s religious? Statistics Canada. Retrieved from http://www.statcan.gc.ca/pub/11-008-x/2006001/9181-eng. htm#decline Coombs, R.H. (1991). Marital status and personal well-being: A literature review. Family Relations, 40(1), 97-102. Daily Mail Reporter. (2010, May 31). Six out of 10 couples ‘unhappy in their relationship.’ Mail Online. Retrieved from http://www.dailymail.co.uk/ news/article-1282851/Six-10-couples-unhappy-relationship.html de Souza, M. (2016). Spirituality in education in a global, pluralised world. New York, NY: Routledge. de Waal, F. (2006). Our inner ape: A leading primatologist explains why we are who we are. New York, NY: Penguin. Deci, E.L., & Ryan, R.M. (2000). The “what” and “why” of goal pursuits: Human needs and the self-determination of behavior. Psychological Inquiry, 11(4), 227-268. Divorce Magazine. (2010). World Divorce Statistics. Retrieved online from http://www.divorcemag.com/statistics/statsWorld.shtml Elkins, D.N., Hedstrom, L.J., Hughes, L.L., Leaf, J.A., & Saunders, C. (1998). Toward a humanistic phenomenological spirituality: Definition, description, and measurement. Journal of Humanistic Psychology, 28(4), 5-17. doi: 10.1177/0022167888284002 Emmons, R.A. (1999). The psychology of ultimate concerns: Motivation and spirituality in personality. New York, NY: Guilford Press. Emmons, R.A. (2000). Is spirituality an intelligence? Motivation, cognition, and the psychology of ultimate concern. International Journal for the Psychology of Religion, 10(1), 3-26. doi: 10.1207/S15327582IJPR1001_2 Emmons, R. A. (2005) Striving towards the scared: Personal goals, life meaning, and religion. Journal of Social Issues, 61(4), 731-745. Fowler, J.W. (1981). Stages of faith. San Francisco, CA: Harper & Row. Frankl, V.E. (1985). Man’s search for meaning (Revised & updated ed.). New York, NY: Washington Square Press. Gallup. (2016, June 29). Most Americans still believe in God. Gallup. Retrieved from http://www.gallup.com/poll/193271/americans-believe-god.aspx

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Gilbert, D. (2006). Stumbling on happiness. New York, NY: Knopf. Gottlieb, R.S. (2012). Spirituality: What it is and why it matters. New York, NY: Oxford University Press. Gottman, J.M. (1998). Clinical manual for marital therapy. Seattle, WA: The Seattle Marital and Family Institute. Haaken, J. (2010). Hard knocks: Domestic violence and the psychology of storytelling. New York, NY: Routledge. Hatfield, E., & Rapson, R.L. (1994). Love and intimacy. In V.S. Ramachandran (Ed.), Encyclopedia of human behavior, 3 (pp. 1145-1149). New York, NY: Academic Press. Hill, P.C., Pargament, K.I., Hood Jr, R.W., McCullough, M.E., Swyers, J.P., Larson, D.B., & Zinnbauer, B.J. (2000). Conceptualizing religion and spirituality: Points of commonality, points of departure. Journal for the Theory of Social Behaviour, 30(1), 51-77. Human Resources and Skills Development Canada (2010). Indicators of wellbeing in Canada: Family life—Divorce. Retrieved online from http:// www4.hrsdc.gc.ca/[email protected]?iid=76 Infidelity Facts. (2006). Infidelity statistics. Retrieved from http://www.infidelityfacts.com/infidelity-statistics.html Ivtzan, I., Lomas, T., Hefferon, K., & Worth, P. (2016). Second wave Positive Psychology: Embracing the dark side of life. Abingdon, UK: Routledge. Jampolsky, G.G. (2011). Love is letting go of fear (3rd ed). New York, NY: Crown. Klinger, E. (1998). The search for meaning in evolutionary perspective and its implications. In P.T.P. Wong & P.S. Fry (Eds.), The human quest for meaning: A handbook of psychological research and clinical applications (pp. 27-50). Mahwah, NJ: Erlbaum Klinger, E. (2012). The search for meaning in evolutionary goal-theory perspective and its clinical implications. In P.T.P. Wong (Ed.), The human quest for meaning: Theories, research, and applications (pp. 23-56). New York, NY: Routledge. Maslow, A. (1971). Farther reaches of human nature. New York, NY: McGrawHill. Mother Theresa. (1995). A simple path. New York, NY: Random House. Munsey, C. (2010). Does marriage make us happy? Monitor on Psychology, 41(9), 20-21. Retrieved from http://www.apa.org/monitor/2010/10/marriage.aspx Narvaez, D. (2013). The 99 percent—Development and socialization within an evolutionary context: Growing up to become “A good and useful human being.” In D. Fry (Ed.), War, peace and human nature: The convergence of evolutionary and cultural views (pp. 643-672). New York, NY: Oxford University Press. Newman, D.M. (2009). Families: A sociological perspective. New York, NY: McGraw-Hill. Paloutzian, R.F., & Park, C.L. (Eds.). (2013). Handbook of the psychology of religion and spirituality (2nd ed.). New York, NY: Guilford Press. Pargament, K.I. (2001). The psychology of religion and coping: Theory, research, practice. New York, NY: The Guilford Press.

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Park, C.L. (2007). Religiousness/spirituality and health: A meaning systems perspective. Journal of Behavioral Medicine, 30(4), pp. 319-328. doi: 10.1007/ s10865-007-9111-x Parke, M. (2003). Are married parents really better for children? What research says about the effects of family structure on child well-being. Center for Law and Social Policy. Retrieved from http://www.clasp.org/resourcesand-publications/states/0086.pdf Pew Research Center. (2012, October 9). “Nones” on the rise: One-in-five adults have no religious affiliation. Retrieved from http://www.pewforum.org/ Unaffiliagted/nones-on-the-rise.aspx. Renzetti, C.M., & Larkin, V.M. (2009). Economic stress and domestic violence. VAWnet. Retrieved from http://vawnet.org/material/economic-stress-anddomestic-violence/ Rogers, C. (1961), On becoming a person: A therapist’s view of psychotherapy. Boston, MA: Houghton Mifflin. Ross, C.A., Mirowsky, J., & Goldsteen, K. (1990). The impact of the family on health: The decade in review. Journal of Marriage and the Family, 52(4), 1059-1078. Retrieved from http://www.jstor.org/stable/353319 Tolstoy, L. (2004). Anna Karenina (C. Garnett, Trans.). New York, NY: Barnes & Noble. (Original published 1877) van Deurzen, E., & Adams, M. (2010). Skills in existential counselling & psychotherapy. London, UK: Sage. Waterman, A.S. (2008). Reconsidering happiness: A eudaimonist’s perspective. The Journal of Positive Psychology, 3(4), 234-252. doi: 10.1080/174397608 02303002 Wong, L.C.J., & Wong, P.T.P. (2015, August). Spiritual competence from an existential perspective. Presented in the symposium on “Increasing supervisory competence in religious and spiritual issues” at the Annual Convention of the American Psychological Association, Toronto, ON. Wong, P.T.P. (1998a). Implicit theories of meaningful life and the development of the Personal Meaning Profile (PMP). In P.T.P. Wong, & P. Fry (Eds.), The human quest for meaning: A handbook of psychological research and clinical applications (pp. 111-140). Mahwah, NJ: Erlbaum. Wong, P.T.P. (1998b). Spirituality, meaning, and successful aging. In P.T.P. Wong, & P. Fry (Eds.), The human quest for meaning: A handbook of psychological research and clinical applications (pp. 359-394). Mahwah, NJ: Erlbaum. Wong, P.T.P. (2003). The Positive Psychology of love. Positive Living Newsletter. Retrieved from http://www.meaning.ca/archives/presidents_columns/pres_ col_jun_2003_positive-psychology-love.htm Wong, P.T.P. (2010). The PURE way for a better marriage. International Network on Personal Meaning. Retrieved from http://www.meaning.ca/PLNL/ dec-2010/pure-marraige-wong.html Wong, P.T.P. (2011). Positive Psychology 2.0: Towards a balanced interactive model of the good life. Canadian Psychology, 52(2), 69-81. Retrieved from http://www.drpaulwong.com/positive-psychology-2-0-towards-a-balancedinteractive-model-of-the-good-life/ Wong, P.T.P. (2012). From logotherapy to meaning-centered counseling and therapy. In P.T.P. Wong (Ed.), The human quest for meaning: Theories, research, and applications (2nd ed., pp. 619-647). New York, NY: Routledge.

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Wong, P.T.P. (2016a, July). Self-transcendence: A paradoxical way to become your best. Presidential address for the 9th Biennial International Meaning Conference in Toronto, ON, Canada. Retrieved from http://www.drpaul wong.com/self-transcendence-paradoxical-way/ Wong, P.T.P. (2016b). Four defining characteristics of self-transcendence. Paper presented at the research working group meeting for Virtue, Happiness, and the Meaning of Life Project, Columbia, SC. (Funded by the John Templeton Foundation) Wong, P.T.P., & Wong, L.C.J. (2013). The challenge of communication: A meaning-centered perspective. In E. van Deurzen, & S. Iacovou (Eds.), Existential perspectives on relationship therapy. Hampshire, UK: Palgrave Macmillan.

Chapter 3

Philosophical Foundations for Marriage Counselling Reuven P. Bulka

The counsellor facing clients in marriage or love difficulties now has at his or her disposal a great variety of techniques, tests, therapeutic games, and exercises. These techniques, however, according to Logotherapeutic beliefs, are likely to bring lasting results only when directed toward the ultimate goal of helping the couple find meaning in their relationship. This chapter presents some of the concepts that are oriented toward that end—finding meaning—by seeing love as a truly human phenomenon. Logotherapy on Love Logotherapy sees love as a vital component of human expression. Truly human love, as truly human life, exists in the spiritual dimension, and is a spiritual relationship between individuals. Logotherapy emphasizes the “responsibleness” of the individual to life; one being responsible for the fulfillment of meaning. This responsibleness is based on each person’s uniqueness and on the singularity of each moment of his or her life. Each individual is unique, and each of the moments of life can be lived only once and can never be retrieved. The imperative to act flows from the responsibleness rooted in the unique individual’s capacities, combined with the singularity of the moment. It is a responsibleness not to waste the self or time. In Frankl’s words, “each moment is irrepeatable and each person irreplaceable.” And, more specifically, “Love is living the experience of another person in all his uniqueness and singularity: In love the beloved person is comprehended in his very essence, as the unique and singular being that he is; he is comprehended as a Thou, and as such is taken into the self” (Frankl, 1967, pp. 106-107). Uniqueness implies the realization that the partner is irreplaceable. In human love, the partners are not concerned with what the other “has”; instead they focus on what the other ”is”. What each one “is” is unique and cannot be duplicated. Singularity stresses the value of each

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moment in the love relationship, which can be lived only once. The awareness of the partner’s uniqueness and each moment’s singularity serves as a guarantee never to neglect or take the other for granted. The Meaning of Love To Frankl (1967), love is “the ultimate and the highest goal to which man can aspire” (pp. 58-59). It presupposes the capacity of the lover for self-transcendence, which enables him or her to concentrate on values and being outside the self instead of yearning for self-realization or selfexpression. In order to love, one must transcend the self toward another being or cause. “Man is never concerned primarily with himself but, by virtue of his self-transcendence quality, he endeavours to serve a cause higher than himself, or to love another person. Loving and serving a cause are the principle manifestations of this self-transcendent quality of human existence that has been totally neglected by closed-system concepts such as the homeostasis principle” (p. 44). Love facilitates the mutual self-transcendence of both partners. It opens up a new world of values and gives to the partners a heightened receptivity to these values. Self-fulfillment is self-defeating when inneroriented. Instead, it is the outgrowth of an orientation toward transcendence. Love contains its greatest meaning in this context, for it opens up the world of possibilities and effects its actualization. Frankl believes that by making the beloved person aware of the inherent potential, the lover helps the beloved make these potentialities into actualities. Love triggers an upward spiral that causes both partners to attain heights otherwise unreachable. The loved one wants to be worthy of the lover, to grow more and more in the image that the lover holds. Each one, in a manner of speaking, outbids the other to be worthier and, thus, elevates the other. In a good relationship, the partners “bring out the best in each other,” just as in a bad relationship, they bring out the worst. Frankl emphasizes that although love can give meaning to life, a life without love is not meaningless. Meaning is unconditional and love is an effective means to meaning, but other avenues can also lead to meaning fulfillment. Meaning is realized not merely through what is given or denied, but rather through the attitude and approach taken. An unhappy love experience can start a process of self-investigation leading to true

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fulfillment. Meaning is never in anticipation: It is recognized retroactively through the quality one sees in each situation. Sex and Love Frankl’s theory on the role of sex in the love relationship follows from his contention concerning the pursuit of pleasure: “Actually, man does not care for pleasure and happiness as such but rather for that which causes these effects, be it the fulfillment of a personal meaning, or the encounter with a human being” (Frankl, 1966, p. 101). For the healthy person, pleasure and happiness are side-benefits of meaning fulfillment. If sex is considered the pleasure aspect of the love relationship, then one’s primary concern is love itself, the spiritual core of the other. Arousal is stimulated by the body, but love itself is not directed toward the body: It is directed to the other’s being. In human love, sex is not an end in itself. “For the real lover, the physical, sexual relationship remains a mode of expression for the spiritual relationship which his love really is” (Frankl, 1967, pp. 112-113). The sexual act is the symbolic immersion in the totality of the partner, and opens up an ultimate togetherness. For Frankl, sex is really “human” sex only when it is the expression of love. Love is a primary phenomenon, not an epiphenomenon of sexual drives. It is not sex that brings love; rather, it is love that has, as its unique language, sex. When sex is anything less than expression of a deeply rooted relationship, the partner is reduced to a mechanistic source for the satisfaction of the sexual appetite. The partner becomes a mutual means to an end. Within this framework, a love relationship does not disintegrate when sex is impossible. If love is primary, and sex a mere expression of that love, then, in situations where renunciation is called for, love remains unabated. Love and Marriage Marriage does not follow necessarily from the presence of love, but love is the most important precondition for marriage in most of Western culture. If love is the recognition by each partner of the unique potentiality of the other, then marriage is the mutual agreement to meet the world of values as a committed whole, and to complement each other

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in the actualizing of these values. A partner trespasses the agreement of matrimony when indulging in a diversionary act that neglects and negates the other. Since marriage is commitment to infinite possibility, there is no moment in the union that does not afford the opportunity to realize values, or to fulfill the potential meaning of two lives spent together. Disregard of the singularity of the union manifests itself in many forms, each destroying the exclusiveness of the bond. In this respect, the marriage partners may not realize all possible values. Awareness of this concern is a healthy state of being, because it at once acknowledges what might have been, and what can still become in spite of a moment that disregards the singularity of the bond. The dynamics of fidelity in the framework of Logotherapy is that faithfulness cannot be demanded; it must ensue as the mirror reflection of each partner’s commitment. This ideal of love and marriage is not the norm in contemporary society, even though it is philosophically sound. For some, marriage involves union with a “type,” easily found and easily replaceable. “Today’s average man takes this type of woman for his erotic ideal because she cannot, in her impersonality, burden him with responsibility. The type is ubiquitous. Just as one chorus girl in the revue can be replaced by any other, so in life this type of woman is easily replaceable. The chorus-girl type is an impersonal woman with whom a man need have no personal relationship, no obligations; a woman he can ‘have’ and therefore need not love. She is property, without personal traits, without personal value” (Frankl, 1967, p. 115). The very nature of such a relationship invites its breakdown, for infidelity follows from impersonality. Frankl has also pointed out that where the quality of love is missing, it is compensated by quantity of sexual pleasure. Logotherapy Applied Logotherapy’s theory of life and love appears to be highly moralistic and idealistic, almost unattainable for “mere mortals.” Logotherapy-trained counsellors have found, however, that what appears to be moral preachment is really empirical wisdom of the heart, retranslated from its phenomenological context into the language of the man in the street (Frankl, 1965, pp. 131-132). It may seem beyond the reach of ordinary people, but the demand for such reaching, if it comes from one’s own spiritual unconscious, is therapeutic. In fact, Frankl calls his idealism

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“the real realism” (Frankl, 1965, p. 83). “Humane humans are and will probably remain a minority, but it is precisely for this reason that each of us is challenged to join the minority” (Frankl, 1965, p. 84). Logotherapy examines what is necessary for humans to achieve a state of health. The will to meaning is the primary motivational force not because moral law so dictates but because the human being is healthy when oriented toward meaning. The authentic striving for meaning results in pleasure and self-fulfillment automatically and holds off existential frustration or “noogenic neurosis.” The ideal human is a healthy spiritual being, and Logotherapy derives from the ideal. Therapy often bridges the gap between the real and the ideal, or changes the static thinking of the patient to an outward, future-oriented frame of mind. Marriage illustrates how the failure of an ideal leads to the breakdown of the real. The human love relationship cannot be grounded in the striving for self-fulfillment, or even in the mere fulfillment of the other. In the I-Thou relationship, “this dialogue defeats itself unless I and Thou transcend themselves to refer to the meaning outside themselves” (Frankl, 1969, p. 8). Just as the individual is fulfilled through the actualization of values, the marriage couple fulfills their selves through the world of meaning and values. In this ideal relationship, sex is the language of love, as natural and automatic as speech. But regarding happiness deriving from sex, Frankl cautions again and again that “happiness cannot be pursued, it must ensue. The more sex is made an aim, the more likely it is to fail. The more a male client tries to demonstrate his potency, the more he is likely to become impotent; and the more a female client tries to demonstrate to herself that she is capable of fully experiencing orgasm, the more liable she is to be caught in frigidity” (Frankl, 1974, p. 10). The approach of Logotherapy in cases of sexual dysfunction is to put the matter of sex into the proper perspective. A young woman came to me complaining of being “frigid.” The case history showed that in her childhood she had been sexually abused by her father. However, it was not this traumatic experience in itself that had eventuated in her sexual neurosis, as could easily be experienced. For it turned out that, through reading popular psychoanalytic literature, the patient had lived all the time in fearful expectation of the toll that her traumatic experience would some day take. This anticipatory anxiety resulted in both excessive intention to confirm her femininity and excessive attention centered upon herself rather than upon her partner. This was enough to incapacitate the patient for the peak experience of sexual

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pleasure, since the orgasm is made an object of intention and an object of attention as well, instead of remaining an unintended effect of commitment to the partner. After undergoing short-term Logotherapy, the patient’s excessive attention and intention of her ability to experience orgasm was “de-reflected,” to introduce another Logotherapeutic term. When her attention was refocused toward the proper object, i.e., the partner, orgasm established itself spontaneously (Frankl, 1986, pp. 194-195). The Logotherapist is likely to use dereflection and proper intention to counter sexual dysfunction. Another Logotherapeutic improvisation might be to permit the patient every sexual access to the partner except intercourse itself, for “therapeutic” reasons. The patient is thus dereflected from the sexual performance because he is not intending it. The Logotherapist will not be surprised when shortly thereafter, as is likely, the patient will apologetically admit that the doctor’s orders where not heeded, that the sexual act flowed naturally and could not be stopped. Sahakian and Shakian (1972) suggest that, in the technique of dereflection, Frankl anticipated by many years—in fact, in 1947!—this sex therapy approach made famous by Masters and Johnson. What is true of sexual dysfunction in the narrow sense is true of marital dysfunction in the wider sense. In exploring the reasons for the high divorce rate in America, Weiss (1975, p. 8) says that “to a greater extent than seems true elsewhere in the world, we Americans seem to cherish our right to the unimpeded pursuit of happiness, no matter how much sorrow that pursuit may engender.” Beyond this, those living in Western society often heavily accent the realization of the individual’s inner potential for growth, development, and expression; what could be termed the “ethic of self-realization.” It seems increasingly that some aspect of this position is given as a reason for impatience with marriage: And “in several instances in which the pursuit of self-realization did not itself produce the separation, it seemed nevertheless to have contributed to marital strife” (1975, p. 10). Is it possible that the high rate of divorce can be traced back to a philosophy? And, from a clinical view, is it possible that marital problems can be cured through a reorientation toward a different philosophy? It is not necessarily a thorough re-orientation of philosophy that needs to be attained. Sometimes, simply using techniques that move away, however subtly, from focus on the self to focus on the other is all it takes. This is of course presuming that the members of the couple actually like each other.

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A couple was complaining that there were no positive comments in their verbal interplay, just criticism. That complaint came from both. They agreed that their behaviour was disagreeable. There are a number of approaches that can help, common sense approaches to break the ice. After all, Logotherapy is rooted in common sense, sense that perhaps may not be too common after all. One approach is to ask the couple to end each day with a compliment. In other words, it would be the obligation of both husband and wife to find something in the other to compliment. It does not have to be something big; it could even be something trivial. Supper was good, the house looks clean, you came home on time, the refrigerator is well stocked, the kids seem happy, your dress is nice, the tie matches your suit well, I appreciate that you put bread on the table, etc., are all examples. Looking for the good in the other is a great de-reflection exercise, and helps to climb out of the criticism rut. Another way of addressing the complaints is to have each member of the union resolve not to criticize verbally. Instead, every night, at an appointed time, each would write down their criticism of the other for that day, but not show it to their partner. Usually, what happens when reporting back after a week or two of this “homework” is that the list is sparse, or becomes sparse pretty soon. When a person reads the complaint that had heretofore been blurted out, the folly of the observation is invariably realized. From there to effectively changing the criticism pattern is relatively straightforward. Whether it is via looking for the good in the other, or seeing the folly of looking for the bad in the other, the underlining concept in this approach is that the husband and wife detach from themselves to a certain extent, and focus on things beyond themselves, a small but potent way to embark on selftranscendence. The philosophy of self-transcendence is not necessarily embraced, but more importantly, the reality of self-transcendence is implemented. Allport (1961, p. 97) once asked, “may not (sometimes at least) an acquired world outlook constitute the central motive of a life, and if it is disordered, the ultimate therapeutic problem?” Given Allport’s approach and Weiss’ views regarding the increase in marital breakdown, it would appear that many cases of marriage difficulty are rooted in a disordered philosophy. Logotherapy’s philosophy of “self-transcendence” seems as logical a curative for the disordered marriage as its technique of “dereflection” is a curative for disordered sex. Thus, Logotherapy may have a great deal to offer the fields of marital and sex therapy.

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Reflection Questions 1) What are some key things that Logotherapy can contribute to the fields of marital and sex therapy? 2) How can ending each day with a compliment help to change a relationship? How does the “giving a compliment” recommendation fit within Logotherapy theory? Glossary Dereflection: Turning attention away from the concern and orienting attention toward something meaningful instead. I-Thou Relationship: A relationship in which both members in the relationship share the unity of being. Responsibleness: Human responsibility for the fulfillment of meaning. Singularity: The value of each moment in the love relationship, which can be lived only once. Uniqueness: The realization that the partner is irreplaceable and cannot be duplicated. References Allport, G.W. (1961). Comments to earlier chapters. In R. May (Ed.), Existential psychology. New York: Random House. Frankl, V.E. (1966). Self-transcendence as a human phenomenon. Journal of Humanistic Psychology, 6, 97-106. Frankl, V.E. (1967). The doctor and the soul: From psychotherapy to Logotherapy. New York: Bantam Books. Frankl, V.E. (1968). The talk of education in an age of meaninglessness. In S.S. Letter (Ed.), New Prospects for the Small Liberal Arts College. New York: Teachers College Press. Frankl, V.E. (1969). The will to meaning: Foundations and applications of Logotherapy. New York: World Publishing Company. Frankl, V.E. (1974). The depersonalization of sex. Synthesis, 1, 7-11. Frankl, V.E. (1975). The unconscious God. New York: Simon and Schuster. Frankl, V.E. (1986). Man’s search for meaning. New York: Washington Square Press. Sahakian, W.S., and Sahakian, B.J. (1972). Logotherapy as a personality theory. The Israel Annals of Psychiatry and Related Disciplines, 10, 230-244. Weiss, R.S. (1975). Marital separation. New York: Basic Books. N.B. Ideas from this chapter were initially published in: Bulka, R. (1979). The Quest for Ultimate Meaning. New York: Philosophical Library; These ideas have been revised for a modern context and expanded for the present chapter.

Chapter 4

Meaning-making in the identity-intimacy paradox in couple relationships: A perspective based on Gilbert Durand’s Anthropological Structures of the Imaginary Christian Bellehumeur & Laure-Marie Carignan Brian and Judy1 were inseparable high school sweethearts from the same faith-based background. They complemented each other well – Judy was outgoing, a skilled events planner, and had a great sense of humour, whereas Brian was the more athletic yet philosophical type with a deep respect for authority who preferred one-on-one interactions. Both envisaged a career in serving others – Brian as a police officer, and Judy as a teacher. Together, they served as leaders in their youth group and no one in their entourage was surprised when they married at the end of their undergraduate studies. They were supported and loved in their faith-based community. When the time came during the wedding ceremony for each of them to take their individual candles and jointly light the centre candle representing their new union, there was not a dry eye in the audience. And when they subsequently blew out their own candles as the minister pronounced “Thus they are no longer two, but one. So then, no one should split apart what God has joined together” (Matthew 19:6), no one doubted the meaning of this symbolism in the couple’s future life. Brian and Judy supported one another in their choice of careers and maintained lively and meaningful discussions about the “bigger picture” of life even as they each sought to make a difference in the world through their own activities. Brian would often share his troubled feelings about cases he came across as a police officer, and found that Judy was very insightful as she helped him regain a broader perspective on situations. Judy shared her deepest insecurities regarding her competence as a mother as she stayed home with their three children until the youngest one was in school full-time. When she returned to her career in the high school classroom on a part-time basis, she relied on Brian as her “anchor” as she navigated the tough waters of returning to the workplace and all the adjustments that computerization of the classroom during her hiatus had brought on. Then life became more hectic than ever, and there was simply less

1

 Case study is a composite profile from second author’s clinical practice. All names and identifying details have been changed to protect confidentiality of clients.

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time for Brian and Judy to spend together as they shared meal preparation, housekeeping, and carpooling responsibilities. Brian’s shiftwork added to the complexity of their schedules. One day, while on duty, Brian’s fellow officer and partner was shot and killed. Brian took a leave of absence, but didn’t seek psychological help. He withdrew more and more from family activities, and experienced nightmares in which he was never able to rescue a person in need. For the first time in his relationship with Judy, he was unable to express the depth of his struggles with her. He could not envisage a return to active duty, yet could not imagine what else may be meaningful to him as a career. He spent hours pondering his future and questioning if he could ever find meaning in his life again. The children, now teenagers, became used to Dad sitting morosely in the dark. Judy tried desperately to reach out to Brian, only to feel helpless in the usual role she played in their relationship. In the meantime, while Judy was worried about Brian whose medical leave kept extending, she felt she needed to focus on supplementing the family income and increased her classroom hours to full-time status. But continual governmental changes to the educational system took their toll and made it increasingly difficult for Judy to feel effective as a teacher. She became more and more fascinated with the personal issues that her students were experiencing, and began to wonder whether she should pursue graduate studies to become a guidance counsellor. She was reluctant to bring this up with Brian, for fear that this project may seem overwhelming to him, as it would require that he return to his previous level of involvement in the household and with the children. Judy felt that she needed to keep growing as a person, and struggled with feeling stuck in a role in her couple relationship in which she no longer felt helpful to Brian. Gradually, hopelessness took over…

“Who am I?”, “Who are WE?” These fundamental questions are inevitably raised at some point in any couple relationship. We define ourselves both individually and collectively, creating something entirely new, which at times seems graspable, yet at other times remains elusive. Both partners in a couple relationship inherently need to make meaning out of ambiguity (Paloutzian & Park, 2015). For example, a couple’s need for meaning-making2 often increases when facing adversity. When partners, such as Brian and Judy, struggle with who they are as individuals, they also struggle to grasp who they are as a couple.

2  In this chapter, we will explore the “spiritual essence” of “meaning-making”, which differs from the cognitive dimension of “making sense”, a term reflecting the notion of “understanding”. We argue that meaning-making builds identity-intimacy and makes the relationship more “meaningful”.

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With its joys and challenges, life as a couple can be complex: Each partner, alone and together, has to make meaning of their relationship. To make sense of this complexity, couple and family researchers often use two main concepts: identity and intimacy. These two concepts are considered essential notions with respect to the quality of couple and family relationships, as can be noted by the hundreds of studies on the themes of identity and intimacy within couple relationships which have been published (cf. PsycInfo, 2016). Overall, these studies highlight the importance for partners to cultivate well-differentiated individual identities while simultaneously continuing to deepen their intimacy as a couple. It therefore seems important to reflect further on the challenges and issues related to identity and intimacy in family and couple studies.3 This chapter will attempt to demonstrate that these two concepts are complex and carry multiple paradoxes4. Given this context, there is a need to call upon a theory such as Gilbert Durand’s Anthropological Structures of the Imaginary, which embraces the co-existence of opposites and allows for the creation of meaning in the specific identityintimacy paradox of couple relationships. Using an interdisciplinary perspective, this theoretical essay aims to meet an epistemological objective by asking four basic questions. These questions are directly related to the paradox of simultaneously honouring identity and intimacy. The first question asks the following: In what ways are these two notions, identity and intimacy, complex and paradoxical? This leads us to two other questions: Within the couple relationship, how can we deal simultaneously with the separate process of individual identity development while deepening couple intimacy? Then, how do we create meaning out of this fundamental paradox within the couple relationship? The last and fourth question asks the following: Is there a theoretical perspective which may address the 3  Although this essay discusses the importance of identity and intimacy in the context of couple relationships, many authors such as Bowen (1978), Bowlby (1969, 1988), Bartholomew & Horowitz (1991), Debigaré (1995) have demonstrated the importance of one’s early experiences in the family of origin and the influence of the family system in the development of one’s identity and capacity for intimacy in a couple relationship. In sum, the complete study of couple relationships (as partner and ̸or as co-parent) implies an examination of the family of origin and vice versa. 4  This essay has been inspired by an oral communication previously presented in French by the first author in the conference titled An identity to build; an intimacy to live; a challenge for families, a conference sponsored by the Sisters of Our Lady of the Cross Chair in Christian Family Studies and the Institut de Pastorale des Dominicains à Montréal, held at Saint Paul University, 223 Main Street, Ottawa, October 3, 4 and 5, 2013.

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paradoxical nature of these two concepts and thus take into account the complexity of couple relationships? Initially, we will answer the first question by treating the complexity and paradoxes of identity and intimacy. Secondly, we will discuss the paradox of simultaneously honouring identity and intimacy and present two ways to consider it, namely with Gauthier’s (1991) theological approach which highlights the importance of otherness in the couple relationship, and then with Arthur Aron’s (2004) psychological approach which speaks of intimacy in terms of including the other in the self. Thirdly, we will define different terms of meaning (such as the notion of meaning-making) and then present some epistemological considerations in an attempt to answer the third question (How do we create meaning out of this fundamental paradox of the couple relationship?). In the last section, we will show the heuristic potential of Durand’s Anthropological Structures of the Imaginary (Durand, 1960). This theory provides an encompassing conceptual framework to make meaning of the complexity surrounding the regulation of conflicting tensions within the couple relationship. Complexity and Paradoxes of Identity Multiplicity. Defining identity is a complex challenge because of its multiple meanings at the crossroads of various disciplines (de Gaulejac, 2003): law, anthropology, sociology, political science, psychology, to name a few. Without being exhaustive, we can immediately distinguish various forms of identity: personal identity, social identity and couple identity. Personal identity is often perceived as more subjective and includes elements of unity, steadfastness, and recognition of what is distinct (de Gaulejac, 2003). In contrast, social identity (Baugnet, 1998) is more objective and refers to the common ground that a person shares with other members of diverse membership groups. Social identity can thus be plural, while personal identity is classified as singular. For example, we can say that a person is a single Catholic woman in her thirties, which refers to four membership groups (gender, religion, marital status, age), yet each woman within these membership groups is unique. Finally, as an intimate relationship between two people evolves, partners will develop a couple identity (Maniaci, 2009); they will define themselves increasingly as part of a pair, rather than as separate individuals.

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Somehow, couple identity seems to emerge at the junction between personal identity and social identity. Paradox. To this multiplicity is also added the paradoxical nature of identity: “[B]etween the idea of similarity (...) and that of differentiation (...), the term identity takes its meaning in a dialectic where similarity refers to the dissimilar, uniqueness to otherness, the individual to the collective, unity to differentiation, objectivity to subjectivity” (de Gaulejac 2003, p. 175). We should also mention the existing paradoxical tension between permanence and change (de Gaulejac 2003). For example, in more traditional societies, the roles of husband and wife are more closely linked to their social function. However, in postmodern societies, different roles are possible for spouses or couples. It remains up to the couple to create their own inherently coherent roles within a more diversified world, so they can find meaning for their existence. “Ultimately, identity is at the intersection of two irreducible realities: the irreducible psyche, which is based on a desire to be, and the irreducible social, which pins individual existence from its place in a line (in the diachronic) and from its position in society (in synchrony)” (de Gaulejac, 2003, p. 178). Furthermore, Tickerhoof (2002) points to the paradox of the self according to different understandings of certain dimensions of Eastern and Western thought: In the East the spiritual goal of the self is more that of disappearance. At its teleological point, the point of its completion, the individual self will be absorbed back into Brahman, the One, the All. Until that time it is caught in samsara, the unending cycle of individual existences or reincarnations. The individual’s separate existence presents an illusion of importance with its experiential mixtures of success and failure, hope and disillusionment, joy and suffering, but all this is just an appearance. (…) In some Eastern thought (like Buddhism), a way out of the endless cycle is offered through enlightenment.(…) Contrary to the goal of absorption and disappearance, in the West individuality has generally been seen as something to be perfected or fulfilled. The self is not to be lost in a formless whole, but, quite the contrary, it is to come to a sharper definition. There is a reason behind what happens to the individual in the course of life. No actions are unimportant, and all help bring the individual into clearer focus, for better or worse. (….) And whatever Westerners understand this paradise or heaven to be, they expect that it will bring with it the awareness of who they truly are, as well as who others are in the most heightened and perfected form of existence. Even Westerners who do not believe in an afterlife still tend to see the journey of this life as a quest for individual fulfillment (Tickerhoof, 2002, p. 118-119).

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That being said, in Western research, what kind of identity are we talking about? We should mention the major contribution of Paul Ricoeur’s (1985) existential philosophy which distinguishes between two modes of being corresponding to two questions: “What?”, which falls within the essence of a thing (identity-idem or sameness), and “Who?”, which refers to the essence of a person (identity-ipse or selfhood). Now we find that in human sciences, especially in empirical research arising from the positivist paradigm (Zinnbauer, 2013), we study human identity mostly in terms of identity-idem (Ricoeur, 1985) or “What?”; that is to say that we aim to study all of the psychosocial provisions by which a person is recognized as being the same over time, or else always similar to others by way of specific human characteristics (Ricoeur, 1985). However, the “Who?” question reflects the tension between permanence and identity change. Indeed, “even within permanence through time, the person will experience transformations which willingly or not, will determine his own identity. (...) Therefore, identity is not what never changes, but rather what allows a person to always change without ever ceasing to be himself.” (Ricoeur, 1985, p. 443-445, our translation). Identity-ipse or selfhood thus allows us to characterize a human being by considering him as a worthy person, responsible, accountable and non-substitutable (Ricoeur, 1990). Complexity and Paradoxes of Intimacy Complexity. While the term “intimacy” is of more recent origin than “identity”, the roots of its complexity can be found in its etymology. From the Latin word “intimus” which means the “innermost and deepest”5, this term refers to the consciousness of what is inside, to the knowledge of the more secret reality within self and within the other. Furthermore, the French verb “intimer” (which in English is translated into “to order”, “summon”, “notify”) takes the meaning of “command” or “signify with authority”.6 This last meaning includes an important nuance: To be intimate, would it not be to open up to each other, with authority, that is to say, to be oneself in one’s own name, therefore remaining different from each other? It is then thus possible to be close to each other, to live in otherness, without risk of identity fusion. 5

 (reference translated from Le Petit Robert dictionary, 2007).  (reference translated from Le Petit Robert dictionary).

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Intimacy refers to the process by which two people try to get close to each other, reciprocally, and come to know one another in what they are deep within their innermost selves. The intimate relationship is that “where the other has a great motivational and emotional importance for oneself, and where the partners demonstrate a high degree of interdependence over a long period of time. This is a relationship characterized by self-disclosure, familiarity with each other, the inclusion of the other within oneself and a high level of commitment to each other and to the relationship” (Dubé, 2006, p. 344, our translation). Lastly, true intimacy is possible under certain conditions (Saloumé, 1995): Openness to exchanging views and to sharing a certain vulnerability, transparency and reciprocity. Paradoxes. To the complexity of the term “intimacy”, we must add its paradoxical character which unfolds in multiple ways. A first paradox (Marquet, 2014): Intimacy indicates both the greatest openness to the other, and the largest “closure” in order to maintain a part of oneself private – that is to say the secrets or moods that we hide from any “foreigner” and that we only manage to partially reveal to the beloved (that only the One or God knows fully). A second paradox is related to territorial privacy (Saloumé, 1995) which refers to a place each partner may have, a delimited and identified space (e.g., a drawer, an armchair) that is for oneself alone. Yet, territorial intimacy is not to be confused with freedom, trust and transparency, but refers to discretion arising from respect (e.g., by closing the couple’s bedroom door). The paradox linked to territorial intimacy lies in the fact that each partner feels both the need to preserve his personal (territorial) privacy and to share his intimacy with his or her partner. A third paradox refers to physical intimacy (Saloumé, 1995) which is linked to one of our most primitive and profound needs, that of being touched, welcomed, recognized in our body. However, physical intimacy can both win someone’s trust and respond to the basic need to be touched, but at the same time can awaken very deep-seated fears related to that of being invaded, dispossessed, broken up or abandoned by the other. Lastly, a fourth paradox concerns intimacy and time sharing (Saloumé 1995). Married life constantly involves a dialectic tension between the need for couple time and for each partner’s personal time which may vary from one individual to another. It is therefore paradoxical: for each spouse, to take time for oneself can be beneficial to the marital

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relationship, and in return, the spouses also need to devote time to their relationship by spending time together. The existence of various paradoxes related to identity and intimacy are sources of confusion or may challenge one’s meaning system. Let us define more clearly various notions of meaning. Defining Various Terms Related to Meaning Frankl’s (1969) earlier writing on the “will to meaning” as the primary and basic human motive, stating that finding meaning was more important than the goal to gain pleasure or power, has inspired many researchers to expand on this idea. But, what is the definition of meaning? As Baumeister (1991) suggested, even if defining meaning may be difficult because it implies the use of meaning, the writings of Park and her collaborators offer some interesting denotations of the term meaning. Based on a comprehensive synthesis of the vast literature on meaning and meaning-making, Park (2010) presents a valuable model of meaningmaking. To begin with, Park (2005) draws distinctions between several well-defined components, including global meaning, situational meaning, meaning-making processes, and meanings made (Park, 2010). Global meaning refers to broad beliefs, schemas, such as the global sense that one’s life has purpose and direction (Park, 2010). Situational meaning is the assigned meaning of a given stressful event, which is developed from how one construes an event with respect to his or her well-being (Park, 2010). Meaning-making, in contrast to meaning in life, refers to a process of working to restore global life meaning when it has been disrupted or violated, typically by some major unpleasant or terrible life event (…) “Meaning-making” refers to the process of coming to see the situation in a different way and reviewing and reforming one’s beliefs and goals in order to regain consistency among them. The processes through which people reduce this discrepancy involve changing the appraised meaning of the situation (i.e., reappraisal), changing their global beliefs and goals, or both, to achieve integration of the appraised (or eventually reappraised) meaning of the event into their global meaning system. (Park, 2005, p. 299).

The products of these meaning-making processes are meanings made, such as reattributions, reappraisals, perceived growth, feeling a sense of acceptance or that sense has been made, or even the sense of change in

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identity, global beliefs, global goals, or meaning in life (Park, 2010). Furthermore, narrow or global, a meaning is part of a meaning system which contains, reprocesses, and re-transmits various sorts of information, such as attitudes, beliefs, values, goals, identity, and worldview (Paloutzian & Park, 2015). Because both concepts, identity and intimacy, co-exist in any couple’s life, at least at some level, let us now explore meaning-making in the identity-intimacy paradox of couple relationships. Combining the Terms Identity and Intimacy: A Paradoxical Coexistence? We must note that combining the concepts of identity and intimacy within the couple relationship is also paradoxical in two ways. A first identity-intimacy paradox refers to the dialectic tension between objectivity and subjectivity. On one hand, with identity-idem (sameness), we notice the external and objective nature of couple identity; one can quite easily know the civil status of a person (e.g., married, single, cohabitation, etc.) which tends to be the same for a certain period of time. On the other hand, intimacy is essentially a reality experienced internally and subjectively. A second paradox refers to the tension between individuation (becoming fully oneself) and couple intimacy. On one hand, with identity-ipse (selfhood), we find that the very essence of selfhood refers to the need to be who we are within the couple relationship, which does not involve being completely separated, but well differentiated from the other; on the other hand, intimacy aims for closeness, closeness derived from being united through one’s experiences and by sharing one’s own life experiences. Delis and Philips (1992) call this tension “Passion Paradox” since passion would carry the seeds of its destruction. These two opposing and complementary forces refer to the desire for fusion (and proximity) and the desire for autonomy (and unicity). How then to live in a relationship where both partners are becoming more and more themselves, unique and differentiated, and at the same time more and more aware of each other, closer, more intimate with another? Gauthier’s theological approach. To try to answer this question, theologian Jacques Gauthier (1991) identifies three couple relationship styles: the fusion couple, the complementary couple and the otherness couple. Diagram A summarizes these three couple relationship styles.

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Diagram A: Gauthier’s couple relationship styles Couple relationship styles Fusion

Complementary Otherness

Mode(s) of partners’ Potential beings and/or acting for couple growth Focus on the “We” No growth instead of “I” and “You”; not well differentiated Compensation, Little growth acceptable level of differentiation Mutual effort and desire Optimal growth to support partner’s development; Optimal level of differentiation

In the fusion couple, based on romantic love, it is the “we” that counts at the expense of “I” and “you” (Gauthier, 1991). This fusion may eventually lead to identity confusion, as both partners are not well differentiated. In the complementary couple, one partner compensates for the shortcomings of the other and vice versa. But in doing so, there is little room for development in this type of couple. By always relying too much on the other, both partners do not develop their own psychospiritual resources (Gauthier, 1991). In the otherness couple style, both partners have discovered and are aware that to love the other is also wanting the other’s growth, simply because it is another, for it is then that the couple can live in otherness (Gauthier, 1991). Yet however much otherness-love is desirable, does it not remain an ideal that can never be fully achieved? Aron’s psychological approach. In relation to the ideal of otherness proposed by Gauthier (1991)’s theological conjugal model, researchers in psychology (Aron et al., 2004) have developed a measure referred to as “the inclusion of the other in oneself”, an element of intimacy. This measure partly allows us to consider the notion of intimacy within the construction of couple identity, that is “the inclusion of the other in the mental image that one has of oneself … the feeling that the other is part of oneself “(Dubé, 2006, p. 345). The “inclusion of the other in oneself” measure is also based on the idea that in an intimate relationship, “the partners act as if some or all of the other’s aspects become theirs, the inclusion being more or less complete” (Dubé, 2006, p. 345 ). To represent this concept, the measure uses two circles which each represent a member of the couple: partners

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are asked to identify the extent to which these two circles can be juxtaposed or included within each other, as illustrated in Diagram B. Diagram B: The Inclusion of Other in the Self Scale

N.B. The Inclusion of Other in the Self scale (IOS) scale is used to determine how close two partners feel to each other. The partner simply circles which of the seven figures he or she feels best characterizes their couple relationship. Source: Adapted from Aron, A., Aron, E. N., & Smollan, D. (1992). Inclusion of other in the self scale and the structure of interpersonal closeness. Journal of Personality & Social Psychology, 63(4), 596–612.

The advantages to inclusion of the other within us lies in the integration or accessibility of the other’s material, informational, or social resources, which then gives us the impression of ownership of these same resources (Dubé, 2006, p. 345). But there are also disadvantages since we can also incorporate within ourselves the eventual loss of these resources. The inclusion of the other within us “also influences, consciously or unconsciously, our perception of the world and our personal identity: the more we become intimate with each other, the more we see the world as the other perceives it, and the more we blend our features and our personal memories with those of the other” (Dubé, 2006, p. 345, our translation). Yet, does the challenge of inclusion not rely on other values such as trust and respecting the other’s freedom so as not to get lost in each other and preserve one’s own individuality? Epistemological considerations These latter two approaches, focusing sometimes on otherness and sometimes on the inclusion of the other in oneself, demonstrate the complexity of studying couple relationships. Other well-known

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approaches borrow a rather dualistic view of human realities: attachment theory (Bowlby, 1969, 1988) rests on a continuum between states of security and insecurity; Bowen’s (1978) theory rests on a continuum between differentiated and undifferentiated states. While helpful, these theories remain limited given the complexity of sociocultural, anthropological and religious factors. Durand (1960/1992) considers such theoretical approaches in the human and social sciences to be reductive or deterministic, relying on binary logic. Although these models can strengthen a person’s identity, they do not indicate how to handle the inclusion of the other in oneself without getting lost, or remaining oneself without compromising a deepening couple intimacy. Moreover, these models cannot account for “otherness” of the other in oneself. If proximity is a good thing for the couple, it happens that partners can live too much of it (Mashek & Sherman, 2004), threatening their personal identity or their sense of personal control. As an example, what happens within the context of domestic violence? Would there then be too much of the other in oneself, or rather, not enough of the other in a possibly too narcissistic self? In short, these approaches illustrate the limitations of studying identity and intimacy from a dualistic model, based on Cartesian rather than systemic logic. A more comprehensive theoretical perspective to account for the identity-intimacy paradox in couple relationships is needed. We argue that Gilbert Durand’s theory of the Anthropological Structures of the Imaginary provides a forum for understanding the identityintimacy paradox of the couple relationship across culture and history, and suggests that this “entirely new” thing which is created out of I-You-Us can be understood within the synthetic-systemic structure of the imaginary. Gilbert Durand’s Anthropological Structures of the Imaginary (ASI) According to Wunenburger (2013), two main methodologies dominated in France and elsewhere during the 1960s: The structuralism of Claude Lévi-Strauss and the hermeneutics of Paul Ricoeur. And then along came anthropologist Gilbert Durand. “[B]etween the two methods, Gilbert Durand want[ed] to take from the work of Lévi-Strauss a science of discourse structures, but from the hermeneutics of Ricoeur the dimension of symbolic meaning, resulting therefore in stating a “figurative structuralism”” (Wunenburger, 2013, p. 8).

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Gilbert Durand’s remarkable erudition, as evidenced through his prolific contributions to literature in the arts, music, philosophical and religious beliefs, mythologies, esotericism, schools of humanities, mainstream civilization trends and the hermeneutics of applied sciences, demonstrates how all human activity unfolds in various fundamental anthropological structures of the imaginary. According to Durand (1960/1992), there are, at the origin of human cultures, reservoirs of images and symbols which continue to shape our ways of thinking, living and dreaming. The imaginary is not just the concern of a rational approach, but is part of the whole human living constitution (Wunenburger, 2013). To realize his vision of the person, Durand (1960/1992) argues that these images and archetypal patterns, common to anyone, deploy in an “anthropological trajectory” defined as a “constant exchange that exists at the level of the imaginary between subjective and assimilationist impulses and the objective intimations emanating from the cosmic and social environment” (Durand, 1960/1992, p. 38, our translation). Durand thus goes against the current of positivism which rather emphasizes the importance of the world of ideas at the expense of imaginative life. Indeed, in his seminal work The Anthropological Structures of the Imaginary (ASI), Gilbert Durand (1960) considers the human being as a homo symbolicus, and the whole symbolic world of the latter constitutes the capability of his imaginary. Note that, as opposed to one individual’s particular imagination, the term imaginary (from the French noun “imaginaire”, and not its adjective equivalent), refers to the general and collective human ability to imagine which Durand (1979) calls “the whole human universe” (p. 23). Two axioms in Durand’s ASI. Durand’s ASI is a theoretical approach featuring an open and inclusive epistemology, as Gilbert Durand views the person as a homo symbolicus. Durand (1960/1992) hereby reinforces the affirmation of his master Gaston Bachelard (1948), with a first axiom: “the images that are raw psychic forces are stronger than ideas, stronger than the actual experiences” (p.20, our translation). Therefore, these “images [are] loaded with ambivalent emotions and symbolic correlates, organized into coherent networks which feed all symbolic expressions. The result is that human rationality is always acquired second.” (Wunenburger, 2013, p. 9, our translation). A second axiom in Durand’s ASI focuses on temporality – under both the Eastern and Western conceptions of time – of the imaginary which comes in the form of functions designed primarily to help tame the passing of time and deal with the existential anguish of death:

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“Finally, the imaginary is basically a temporal psychic activity, that is to say both subject to time and able to challenge the destructive time exposing us to death.” (Wunenburger, 2013, p. 9, our translation). In regards to this latter axiom, it is obvious that both concepts, identity and intimacy, can only evolve in relation to time. Durand’s classification of structures of the imaginary.7 According to Durand (1960/1992), there are two great polarities constructing mental, visual, and narrative images, which are the diurnal and nocturnal regimes. These polarities are based on opposing worldviews or structures of the imaginary: — the heroic structure, arising from the diurnal polarity and the verbal schema “to distinguish,” whose reflexive gesture is postural or standing, which tends to separate and purify; — the mystical structure, arising from the nocturnal polarity and the verbal schema “to confound,” whose reflexive gesture is digestive or absorbing, which tends to receive within oneself Durand also identified a third structure called “synthetic,” (later renamed “systemic”) arising from what he called in later writings the “crepuscular” regime occurring between the nocturnal and diurnal polarities. The systemic structure’s verbal schema is “to link,” and its reflexive gesture is oscillating, rhythmic, or cyclical, tending to synthesize or hold opposites together in harmony without any will of exclusion. Diagram C offers an abridged version of Durand’s classification of anthropological structures of the imaginary. The visual representations in diagram C demonstrate the main differences between the three structures. A bright circle is used to represent the heroic structure, as it echoes the diurnal polarity, the verbal schema “to distinguish,” and also resonates with St-Arnaud’s concept of the energy of productivity and constant tension in life, as discussed below. A darker (black) circle is used to represent the mystical structure, as it echoes the nocturnal polarity, the verbal schema “to confound” and at the same time resonates with St-Arnaud’s energy of solidarity, harmony and a peaceful life. Finally, in the middle, a swirling circle with both the bright and the dark colours is used to represent the systemic structure as it echoes the verbal schema “to link,” and also resonates with St-Arnaud’s energy of regulation. Note that in the systemic structure, there is no “blending” of the two polarities (which would best be represented by a 7

 For more details and definitions of heroic, systemic and mystical structures of the imaginary, see chapter by Stéphanie Larrue and C. Bellehumeur, this book.

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Diagram C: Durand’s classification of structures of the imaginary Regimes Structures Verbal schema Reflexive gesture

Diurnal heroic to distinguish postural

Crepuscular synthetic or “systemic” to link oscillating, rhythmic or cyclical

Nocturnal mystical to confound digestive or absorbing

Visual representations

St-Arnaud`s energy axes

productivity

regulation

solidarity

grey circle, blending grey and black); instead, the swirl illustrates the harmonious co-existence of opposites. Durand’s ASI and St-Arnaud’s energy axes of relational dynamics. In what follows, we will demonstrate the heuristic potential of Durand’s ASI by applying it to the study of couple relationships, and thus its theoretical coherence of the paradoxes concerning identity and intimacy in the couple relationship. In another publication (Bellehumeur, 2014), we have already demonstrated the utility of Durand’s theory in its application to the understanding of a family-centered approach. Laprée (2013) refers to St-Arnaud (1989) in arguing that any group dynamics would comprise three basic energy axes: productivity, solidarity building and adjustment (regulation). Thanks to Durand’s ASI, it is possible to relate these three energy axes of relational dynamics with both identity and intimacy concepts. This demonstration aims to answer a question raised at the beginning—How to simultaneously manage, within the couple relationship, two processes: First, that of identity development and secondly, that of deepening intimacy. Since this question is inherently dynamic, it is thus important in order to respond to call upon theoretical approaches that can take this aspect into account. The heroic structure: An energy of “productivity” related to identity. The first proposed parallel occurs with the “heroic” structure in the diurnal polarity, which is characterized by the verbal schema “to distinguish.” The heroic structure, in its postural reflexive gesture, predisposes

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to stand, to ascend, to separate (or distinguish or clarify) what is good and elevate us from what is bad or evil and makes us fall, to purify, to struggle to victory (Laprée, 2000). Within relationship dynamics, St-Arnaud’s (1989) “productivity” axis is observed in the fact that a couple exists because of the motive that brings the partners together: they come together to “do” something, such as starting a family, or making the most of common interests and values. However, life as a couple depends on the partners’ ability to know themselves well, to have a clear idea of their domestic identity. To achieve this, ‘productive’ energy is required, echoing the postural reflexive gesture of the heroic structure to distinguish identity and to clarify common goals (Laprée, 2000). At the couple level, St-Arnaud’s productivity axis refers to energies devoted to identity consolidation and strengthening: doing things to get to know each other, fulfilling oneself through common goals. A couple may sometimes work on activities to advance projects (ex. renovations), to claim rights before the community, or to ensure healthy living conditions. All these activities require the right aim (i.e. to “purify” one’s hasty judgments) to see things more clearly: “Overall, productive energy remains an action rationalization process. Its base material is information. This thus requires that it be made available as fully as possible to the [couple] so that each may gauge it, take ownership and make informed decisions” (Laprée, 2013, p. 155). It is also important to pay attention to the quality of that information and to clearly identify common objectives: “Not to deal with facts and opinions using the same measure, not to confuse effects and causes, to recognize value judgments and to relativize them at need, to link ideas or put them in contradiction in order to explore new avenues” (Laprée, 2013, p. 155). In short, all these activities within the “productivity” axis relate to the heroic structure, where identity is distinguished and common goals are clarified. The mystical structure: an energy of ’solidarity’ related to intimacy. The second proposed parallel occurs with the mystical structure in the nocturnal polarity, which is characterized by the verbal schema “to confound,” which can also be understood as “to merge,” so that two entities are now indistinguishable. The mystical structure, in its digestive or absorbing reflexive gesture, “induces image configurations obeying fusional relations” (Wunenburger, 2003, p. 22). In this state of fusion, everything is friendly, gentle, peaceful, warm, harmonious and internalized. “[W]ords are softened by figures of speech, such as the euphemism… “the fall is slowed to a descent” (Xiberras, 2002, p. 66).

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In this intimate atmosphere, spouses rely on the experience of their feelings (ex. taste, touch), and seek harmony, gentleness and affection as from the loving embrace. This is sort of a “solidarity building” energy (St-Arnaud, 1989) which echoes the analogy and similarity principles that are found in Durand’s mystical structure. Indeed, it is important that each partner feel good, that he/she find his/her place within the couple while giving the other the same psychological space. Each partner is trying to create for the other an atmosphere of confidence and security. Giving the other a warm welcome is required, as well as respect for the intimate space. If one knows the secret garden of the other, it is respected. Indeed, discretion and privacy are valued when what is shared must remain “between us.” If the energy axis of “solidarity” in the couple system – recalling intimacy – seems to connect with the “productivity” axis – referring to identity – this does not in itself ensure a maintained domestic life. Indeed, how to reconcile the need for identity building of both spouses with their desire for intimacy? This question refers to a regulatory challenge, leading to one of the main sources of trouble for many couples seeking consultation: they no longer know how to manage their conflicts. There has been a disruption in their couple functioning mode. We may add that, as Gottman and Levenson (2002) have shown, the way a couple manage their conflicts can predict if the couple will divorce or not. In what follows, we provide a connection between Durand’s third structure of the imaginary and St-Arnaud’s third energy axis of relational dynamics, that of “regulation,” which takes place between the “productivity” and “solidarity” axes. The systemic structure: An energy of ‘regulation’ to resolve the identityintimacy paradox. The third proposed parallel occurs with the systemic structure in the crepuscular regime, which is characterized by the verbal schema “to link.” The systemic structure, in its oscillating, rhythmic, or cyclical reflexive gesture predisposes to connect opposites, neither of which ever disappears. The crepuscular regime is not a polarity as are the nocturnal and diurnal regimes, but refers “rather to an imaginary place of connection between these first two [heroic and mystical structures]” (Laprée, 2013, p. 157). Adjusting couple dynamics is a very complex task since it is important to manage the tensions that can emerge through multiple identity differences, diverse needs of intimacy, and each partner’s various rhythms. In an individual or a couple, if either the heroic or the mystical structure takes up too much space at the expense of the other, an

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unhealthy condition sets in and causes individual or interpersonal distress, such as a personality disorder or interpersonal conflicts. To remedy these problems, the systemic structure distinguished by a balanced coexistence of the heroic and mystical structures encompasses both “extreme antagonistic structures” (Wunenburger, 2003, p. 22), emphasizing a “construction of cycles which alternate the materials of the two previous structures” (Wunenburger, 2003, p. 46, as cited in Laprée (2013), resulting in an oscillating or rhythmic cycle of eternal return. The systemic structure is where “the most flagrant contradictions find their coherence; they eliminate any shock, any rebellion before the image, even harmful and terrifying” (Laprée, 2000, p. 307; Durand, 1960/1992, p. 400, as cited in Laprée, 2013, p. 157). This dynamic is comparable to music in which we hear a set of varied sounds, silences, and notes of variable length that play in a harmonized rhythm which allows us to experience a range of emotions (Durand, 1960/1992). Other examples of the systemic structure are found in the Taoist symbol of the yin and yang, the coincidentia oppositorum of the Alchemists, and the cross with its vertical and horizontal axes, all images harmonizing opposites (Durand, 1960/1992). As a final example, we may consider the candle lighting symbolism frequently used in Christian weddings. In the moment in which both individual candles light the centre candle, a new common flame emerges while each individual flame is still lit. Meaning and the systemic structure. There is a link between the spiritual term meaning and the systemic structure of imaginary. First, one way to define meaning seems to share some similarity with the term imaginary. In his book Meanings of Life, Baumeister (1991) proposed “shared mental representations of possible relationships among things, events, and relationships,” emphasizing that meaning “connects things” (p. 16). Second, Baumeister (1991) considered the pervasive nature of meaning, describing how it allows human beings to make predictions and to control their personal and social environments; and by doing so, this process transforms their human experience. “Meaning is a tool for adaptation, for controlling the world, for self-regulation, and for belongingness.” (Baumeister, 1991, pp. 357-358). It is interesting to note that the terms controlling, self-regulation and belongingness, respectively echo the heroic, synthetic, and mystical structures of the imaginary. The systemic structure in essence contains the paradoxical realities in its meaning system. Paloutzian and Park (2013) define a meaning system as being able to make continuous sense of data in accordance to one’s beliefs, emotions and behaviours. As such, humans have an inherent

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need “to make meaning… out of ambiguity” (Paloutzian & Park, 2015, p. 171), be it consciously or unconsciously. The systemic structure is also a fertile ground for growth. According to Park (2009), growth can occur when one can see a negative event as the catalyst for positive life change. When this occurs, a person can reorient his or her life and rededicate himself or herself to newly prioritized goals. Sometimes, this kind of growth may involve smaller changes such as being more intimate with one’s partner, taking better care of oneself, seeing one’s own identity more clearly, feeling closer to God, being more grateful in life, and so on (Park, 2009). Furthermore, from a psychological point of view, systemic structures bear witness to plunging within oneself to become aware of one’s vulnerability and to make benevolent use of the time that comes and goes. These structures are those of health and mental balance, of the idea of progress and healthy growth, and to be even more precise, of the recycling of essential and fundamental elements of the past into the present (i.e. process of history making) (Xiberras, 2002). Indeed, when one finds oneself in the presence of disparate elements from diurnal and nocturnal polarities, one must “make the best out of the fact that this harmony is always recomposed in good time (a musical refrain, a season, the commemoration of a type event), and in some cases, one begins to hope that a liberating event will cause the exit of this perpetual renewal” (Laprée, 2013, p. 157-158), such as the birth of a child, or reconciliation after a difficult period. In terms of relational dynamics, the “regulation” energy axis is therefore a highly useful clarification since the “productivity” and “solidarity” energies are referred to as central (Laprée, 2013), in addition to being essential for couple development. By having different features, these two energies can work together so that a couple’s activity achieves its goal more easily, or else, if they are not well adjusted, can harm the couple project. Applying Durand’s Anthropological Structures of the Imaginary to a case study Returning to Brian and Judy’s situation, let us continue their story: Ultimately, both parents sought medical attention, and were each prescribed antidepressants by a physician who also recommended couple therapy.

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As the therapist, who favoured a model of intervention in which symbolism and metaphors are very significant, worked with Brian and Judy, she came to understand and to share her observations of the identity-intimacy paradox with which they were struggling. She helped them trace their identity-intimacy journey from an initial complementary couple style to a fusion couple style in the early years of their marriage, through to the gradual distancing they were experiencing as their respective personal identities appeared to clash in consideration of the otherness perspective. Using Durand’s ASI, the therapist was able to propose an alternative future-focused narrative which the couple embraced, one in which the either-or duality of the identity-intimacy paradox no longer had to paralyze them as it had when they first entered couple therapy.

As this case study shows, Durand’s ASI can be helpful in expanding our understanding of how a couple functions in the identity-intimacy paradox. In the initial phase of their relationship, during their high school and undergraduate years prior to marriage, Brian and Judy experience a complementary couple style, in which they each bring their unique characteristics and contributions to their joint endeavour as youth group leaders, while also pursuing their respective career preparation. From Durand’s ASI perspective, this phase of their relationship is akin to the synthetic or systemic structure, in which each of their lives are linked in a complementary way to achieve something greater than either of them on their own could accomplish – youth group leadership. At the same time, Brian and Judy share a common career goal of service to humanity, but pursue this goal in separate modalities, drawing upon the strengths of their mutual support and shared meaning in life – Brian in preparing to become a police officer, Judy in preparing to become a high school teacher. The next phase of Brian and Judy’s relationship, the early marriage years, was understood by the therapist as representing Gauthier (1991)’s fusion couple style. From Durand’s ASI perspective, this period of the relationship reflects the mystical structure of the imaginary in which the mystery of “two people becoming one” is played out. There is a deep reliance on one another as each now pursues their service-oriented careers. Brian relies on Judy to help him gain perspective whenever he is troubled by situations he encounters in his police activities. Judy considers Brian to be her “anchor” as she faces her own challenges in fulltime motherhood and then in a return to the classroom. Overall, they both enjoy a couple relationship which is quite harmonious and peaceful despite their daily respective challenges. They both feel deeply connected

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to one another, enjoying a meaningful intimacy; this echoes the mystical structure well. During this phase, it would be unthinkable for either to be focused on meaning-making through a shift in their personal identity. The hectic pace of raising three young children in the lifestyle they have chosen together would preclude any such possibility. But a crisis in Brian’s life abruptly shifts the scenario. Brian now struggles with deep internal guilt and questions how he will find meaning in his life as he contemplates what appears to be a necessary career change. Facing adversity on his own, Brian has chosen an individual soul-seeking journey which is representative of Durand’s heroic structure. In fact, Brian feels he must find his own solutions and withdraws from his wife. Judy, feeling helpless as she no longer seems able to fulfill her previous role in the couple relationship, finds herself feeling more and more alone as she contemplates what her own path must be. As the couple therapist introduces Durand’s ASI into Brian and Judy’s narrative, she helps them to make meaning of the identityintimacy paradox of their relationship. Furthermore, the new metaphors arising from Durand’s ASI become useful in helping this couple contemplate their future-focused narrative, one which will reflect the systemic structure once more, but with greater flexibility in reciprocal regulation, as per St-Arnaud’s “regulation” energy axis. Indeed, in returning to Laprée’s application of Durand’s ASI, the couple may adjust or regulate the right dose of energy needed to deploy according to the circumstances and needs of each member and those arising from life situations. It is therefore not a matter of maintaining oneself in a middle area between equal levels of “productivity” energy (related to identity and the heroic structure), and “solidarity” energy (related to intimacy and the mystical structure). Thus, the auxiliary function of the “regulation” energy axis (the systemic structure) becomes indispensable as an energy which is put at the service of the first two, monitoring the “flow of the one and the other main energy and breath[ing] in an additional dose as needed” (Laprée, 2013, p. 160). To elaborate a little more on this idea of regulation in relation to the two other poles (heroic and mystical regimes), it is important to keep in mind that it all depends on the nature of the family daily activities. In some situations, the energy of “productivity” is more needed than the energy of “solidarity;” in other situations, it is the opposite. Let’s present two possible scenarios for Brian and Judy. We could imagine that Brian and Judy, after 3 months of couple therapy, come to the agreement that for the sake of spending quality

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time together as a family, it may be important to go away for two weeks on a tropical island for a long-anticipated family trip. In order to realize this, they need to plan effectively because of time constraints: For example, the best-priced plane tickets will be sold out soon, they have to leave in less than 10 weeks (before school begins) to make sure that every member of the family can be part of this trip. Even if this kind of trip may be exciting, it is likely that it will be the energy axis of “productivity” (related to identity as in the heroic structure) which will be more solicited than the energy of “solidarity” (related to intimacy as in the mystical structure). Why? Because these tasks require to plan all logistical aspects as well as material and medical issues in order to be able to take action efficiently. When time is a constraint, and the tasks to be done seem clear for everyone, it may be well perceived among all members that the climate of intimacy becomes secondary for a while. In other words, carrying out the project takes priority; the spouses and family members must focus on solving problems, such as the tasks to do, meeting deadlines for required vaccines or passports, and so on. This coming trip as a family project may make sense for Brian and Judy, as it validates their couple identity in wishing to spend quality time with their children and fosters memorable family experiences. However, let’s imagine again that Brian and Judy cannot come to an agreement about what kind of vacation they should have as a family or how much money they should spend on this kind of family trip. In this situation, Brian and Judy must pay attention to the intimate context of their relationship, because their conflict is likely to impact their children as well. Both partners are invited to listen to each other, to discover and to respect the other’s dreams and aspirations on both the individual and couple levels. In such a situation, it is important to solicit the energy axis of “solidarity” due to the emotional nature of the relationship. Diving too quickly into the heart of the dispute could keep family members on the defensive. Rather, Brian and Judy must find neutral ground to spend favorable time as family members together and between spouses. Conclusion In this chapter, we noted that personal, social, or couple identity building is essentially paradoxical. Also paradoxical is the notion of intimacy. The combination of identity and intimacy also has a paradoxical character. Although each is so essential to the couple relationship, identity

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and intimacy respectively echo the heroic and mystical structures which can only coexist in dialectical tension. It is thus important for partners to continually seek to balance their desire to become closer – and live an authentic, warm and fruitful intimacy – with their need to remain themselves, and to build both their personal identity and couple identity. Using Durand’s theory of ASI, we showed how it is possible to apply three energy axes of relational dynamics: “productivity,” “solidarity” and “regulation” (St-Arnaud, 1989) to the identity-intimacy paradox in couple relationships. This demonstration allowed us to answer the question: Within the couple relationship, how can we deal simultaneously with the two processes development of identity and deepening of intimacy? Our chapter on the various paradoxes on identity and intimacy within the couple relationship does not explore all possible angles. Because of the complexity of the subject, we cannot pretend to be exhaustive. Due to space constraints, and because we have referred many times to paradox, we conclude this chapter by presenting some thoughts on the links between Durand’s theory of imaginary with spirituality and meaning. The paradoxical coexistence of identity and intimacy is a source of meaning for many couples and families. In order to better appreciate the nature of paradox and its implication on spirituality and quest for meaning, we will briefly describe the role of paradox per se, which can often be seen as a spiritual path to transformation (Tickerhoof, 2002). In his book, Tickerhoof (2002) defines the term paradox as the following: “Paradox is the harmonization of two opposing experiences or aspects of an experience that in themselves are irreconcilable, but through another force acting upon them at a crucial moment are created into a new or transformed reality “ (p. 63). Tickerhoof (2002) develops various elements of a spirituality of paradox: Every aspect of life can be experienced in relation to an opposite aspect. These opposing aspects pervade life and can be found in life forces (a time to be born and a time to die), in events (a time to mourn and a time to dance), or in elements of opposition within events (a time to love and a time to hate). (…) The potential of transformation is what distinguishes paradox from contradiction. Paradox offers us a way through contradiction. This transformation is not found in the two elements of opposition. It presents itself as a distinct reality, different from either of the two opposing forces. This new reality is not ours to manufacture. We should not expect that this transformation will be obvious, or that it will lie on the same plane as the elements of opposition. Transformation will move us somewhere else, frequently surprising us when we find where we have ended up. To discover this transformation, we should be ready to let

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go of our resistances against it. (…). The transformation of opposing forces does not usually eliminate the polarities ˗ it transforms them. Every transformation has a purpose, which is not necessarily our stated purpose. (…) When we not only can recognize that all these principles are true at a theoretical level, but also are able to integrate them at a daily experiential level, where they are allowed to have a permanent impact on our attitudes, choices, decisions, and actions, we live in something I call transforming consciousness. Transforming consciousness is, by its nature, a graced reality, that is, it is the result of our cooperation, and not of our construction. Its nature is essentially that of gift, which we participate in, but do not merit. (pp. 5-6).

In line with a spirituality of paradox, any couple navigating in this ocean of paradoxes is invited to continually seek to balance the desire to come closer – and live an authentic, warm and fruitful intimacy – and the need to remain themselves, and to build both their personal identity and couple identity. In this chapter, we attempted to show how Durand’s ASI may exceed the Cartesian dualism of some empirical studies – perhaps not well suited for the exploration and understanding of spirituality in couple and family – because positivism would tend to isolate phenomena or dissect the elements of a system (Zinnbauer, 2013), instead of understanding them within a larger, more systemic whole, such as Durand’s epistemology. Durand’s theory, because of its ease in dealing with cultural, symbolic, mythical and religious elements, can be useful and pertinent in expanding our understanding of the sociocultural influences on psychological, religious, and spiritual processes. Furthermore, from a biopsychological perspective, there is the relevance of the systemic structure, which can be referred to as valid criteria for health and mental equilibrium or balance, or the idea of progress and healthy growth (Laprée, 2000). Furthermore, in Durand’s systemic structure, there are four significant systemic sub-structures: 1) the harmonization of opposites; 2) the preservation of contrasts; 3) the dissemination through time; 4) the hypotyposis of the future which is made present and controlled by the imagination in the repetitive act of creation. These structures are characterized in several myths from diverse cultural traditions (monotheistic and polytheistic) through the implementation of the “coincidentia oppositorum”. For the imaginary is complementary to reason. While reason tries to capture reality as clearly as possible, the imaginary tries to open the human being to the possibilities of being and acting, that to which many couples aspire.

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Reflection Questions 1) How can Durand’s theory contribute to our understanding of the couple relationship? 2) How is the paradoxical coexistence of identity and intimacy a source of meaning for many couples and families? Glossary Couple identity: emerging at the junction of personal identity and social identity, couple identity reflects the increasing tendency of partners to consider themselves as part of the couple unit or pair. Global meaning refers to broad beliefs, schemas, such as the global sense that one’s life has purpose and direction (Park, 2010). Identity: (according Merriam-Webster): 1 a: sameness of essential or generic character in different instances b: sameness in all that constitutes the objective reality of a thing: oneness. 2 a: the distinguishing character or personality of an individual: individuality b: the relation established by psychological identification. 3: the condition of being the same with something described or asserted Identity-idem (or sameness according to Ricoeur, 1985), we notice the external and objective nature of couple identity; one can quite easily know the civil status of a person (e.g., married, single, cohabitation, etc.) that tends to be the same for a certain period of time. Identity-ipse (or selfhood, according to Ricoeur, 1985), we find that the very essence of selfhood refers to the need to be who we are within the couple relationship, which does not involve being completely separated, but well differentiated from the other. Imaginary (from the French noun “imaginaire”, and not as its adjective equivalent), referring to the general and collective human ability to imagine which Durand (1979) calls “the whole human universe” (p. 23). Intimacy: refers to the process by which two people try to get close to each other, reciprocally, and come to know one another in what they are deep within their innermost selves. This term refers to “the inclusion of the other in the mental image that one has of oneself, it is the feeling that the other is part of oneself “(Dubé, 2006, p. 345).

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Intimate relationship: “where the other has a great motivational and emotional importance for oneself, and where the partners demonstrate a high degree of interdependence over a long period of time. This is a relationship characterized by self-disclosure, familiarity with each other, the inclusion of the other within oneself and a high level of commitment to each other and to the relationship” (Dubé, 2016, p. 344, our translation). Meanings made: products of meaning-making, such as reattributions, reappraisals, perceived growth, or changed identity, global beliefs, global goals, or meaning in life. Meaning-making, in contrast to meaning in life, refers to a process of working to restore global life meaning when it has been disrupted or violated, typically by some major unpleasant or terrible life event. Meaning system: a system of meanings made which contains, reprocesses, and re-transmits various sorts of information, such as attitudes, beliefs, values, goals, identity, and worldview. Paradox: This term refers to the harmonization of two opposing experiences or aspects of an experience that in themselves are irreconcilable, but through another force acting upon them at a crucial moment are created into a new or transformed reality. Passion Paradox: This paradox refers to the fact that intimacy aims for closeness, getting close by being united through one’s experiences and by sharing one’s own life experiences. But, according to Delis and Philips (1992), passion (this attraction to closeness) can also carry the seeds of its destruction. Situational meaning is the assigned meaning of a given stressful event which is developed from how one construes an event with respect to his or her well-being (Park, 2010). Personal identity is often perceived as more subjective and includes elements of unity, steadfastness and recognition of what is distinct (de Gaulejac, 2003). Social identity (Baugnet, 1998) is more objective and refers to the common ground that a person shares with other members of diverse membership groups. Social identity is thus plural, while personal identity will be classified as singular. References Aron, A., Aron, E.N., & Smollan, D. (1992). Inclusion of other in the self scale and the structure of interpersonal closeness. Journal of Personality & Social Psychology, 63(4), 596-612.

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Aron, A., McLaughlin-Volpe, T. & Mashek, D., Lewandowski, G., Wright, S.C. & E.N. Aron (2004). Including others in the self. European Review of Social Psychology, 15, 101-132. Bachelard, G. (1948). La Terre et les rêveries du repos. Paris: José Corti. Bartholomew, K., & Horowitz, L.M. (1991). Attachment styles among young adults: a test of the four-category model. Journal of Personality and Social Psychology, 61, 226-244. Baugnet, L. (1998). L’identité sociale. Paris: Dunod. Baumeister, R.F. (1991). Meanings of life. New York: Guilford Press. Bellehumeur, C.R. et J. Malette (2010). Regards psychosociaux sur les défis de la pratique de la pleine conscience. Counseling et spiritualité, 29(1), 67-89. Bellehumeur, C.R. (2011). Rapprochements entre la résilience, la spiritualité et l’imaginaire Durandien. Counselling et spiritualité 30(1), 45-70 Bellehumeur, C.R. (2014). Quelques applications de l’imaginaire durandien à l’étude de la famille. In K. Demasure, É. Champagne, R. Martinez de Pison, & M. Rovers (Eds.), Family’s Many Faces – La famille au pluriel (pp. 3-18). Leuven, Belgique: Peeters. Bowen, M. (1978). Family Therapy in Clinical Practice. New York: Jason Aronson. Bowlby, J. (1969). Attachment and Loss: Vol.1: Attachment. London: Hogarth Press. Bowlby, J. (1988). A Secure Base. Clinical Application of Attachment Theory. London: Routledge. Debigaré, J. (1995). L’intimité. Montréal, Québec: Le Méridien. Delis, D. & C. Philips (1992). Le paradoxe de la passion. Les jeux de l’amour et du pouvoir, collection Réponses. Éd. Robert Laffont. de Gaulejac, V. (2003). Identité. In J. Barus-Michel, E. Enriquez et A. Lévy (Eds), Vocabulaire de psychosociologie. Références et positions (pp. 174-180). Ramonville Saint-Agne: Éditions Érès. Dubé, L. (2006). Les relations interpersonnelles. In R.J. Vallerand (Ed.), Les fondements de la psychologie sociale, 2e édition. Boucherville: Gaëtan Morin éditeur. Durand, G. (1960 [1992]). Les Structures anthropologiques de l’imaginaire : Introduction à l’archétypologie générale. Paris: Dunod. Durand, G. (1979). Figures mythiques et Visage de l’œuvre: De la mythocritique à la mythanalyse. Paris: Berg International. Durand, Y. (2005). Une technique d’étude de l’imaginaire : L’AT.9. Paris: Harmattan. Frankl, V.E. (1969). The will to meaning. New York: New American Library. Gauthier, J. (1991). Les défis des jeunes couples. Campin à Tournai, Belgique: Librairie Arthème Fayard. Gottman, J.M. and Levenson, R.W. (2002). A two-factor model for predicting when a couple will divorce: exploratory analyses using 14-year longitudinal data. Family Process, 41(1), 83-96. Laprée, R. (2000). La psychagogie des valeurs. Symbolique et imaginaire en éducation. Montréal: Éditions Logiques. Laprée, R. (2013). La dynamique de groupe et les structures anthropologiques de l’imaginaire. In R. Laprée et C.R. Bellehumeur (Eds), L’imaginaire durandien. Enracinements et envols en Terre d’Amérique (pp. 149-165). Québec: Presses de l’Université Laval.

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Nouveau Petit Robert (Le) (2007). Dictionnaire alphabétique et analogique de la langue française. Paris: Dictionnaires Le Robert. Maniaci, M.R. (2009). Couple identity. In H.T. Reis & S. Sprecher (Eds.), Encyclopedia of Human Relationships. Thousand Oaks, CA: Sage. Marquet, D. (2014). Le paradoxe de l’intimité. http://www.cles.com/chronique/ le-paradoxe-de-l-intimite. Consulted on July, 24, 2015. Mashek, D. & M. Sherman (2004). Feeling too close to intimate others. In D. Mashek & A. Aron (Eds.), Handbook of closeness and intimacy (pp. 343356). Mahwah, NJ : Lawrence Erlbaum Associates Inc. Paloutzian, R.F. & Park, C.L. (2013). Recent progress and core issues in the science of the psychology of religion and spirituality. In R.F. Paloutzian & C.L. Park (Eds), Handbook of the Psychology of Religion and Spirituality (pp. 3-22). New York: the Guilford Press. Paloutzian, R.F. & C.L. Park (2015). Religiousness and Spirituality: The Psychology of Multilevel Meaning-Making Behavior. Religion, Brain & Behavior, 5(2), 166-178. doi: 10.1080/2153599X.2014.891254 Park, C. L. (2005). Religion and Meaning. In R.F. Paloutzian & C.L. Park (Eds), Handbook of the Psychology of Religion and Spirituality (pp. 295-314). New York: the Guilford Press. Park, C.L. (2010). Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment stressful life events. Psychological Bulletin, 136(2), 257-301. Ricoeur, P. (1985). Temps et récit. Tome III: Le temps raconté. Paris: Éditions du Seuil. Ricoeur, P. (1990), Soi-même comme un autre. Paris: Édition du Seuil. Salomé, J. (1995). Jamais seuls ensemble : comment vivre à deux en restant différents. Montréal: Les Éditions de l’Homme. St-Arnaud, Y. (1989). Les petits groupes. Participation et communication. Montréal: les Presses de l’Université de Montréal, Les Éditions du CIM. Tickerhoof, B. (2002). Paradox: the Spiritual Path to Transformation. Mystic, CT: Twenty-Third Publications. Wunemburger, J.-J. (2013). L’anthropologie de l’imaginaire selon Gilbert Durand. Contextes, options, enjeux. In R. Laprée et C.R. Bellehumeur (Eds.), L’imaginaire durandien. Enracinements et envols en Terre d’Amérique. Québec: Presses de l’Université Laval. Xiberras, M. (2002). La pratique de l’imaginaire. Lecture de Gilbert Durand. Québec: Les Presses de l’Université Laval. Zinnbauer, B.J. (2013). Models of healthy and unhealthy religion and spirituality. In K. Pargament (Ed.), APA Handbook of Psychology, Religion and Spirituality, vol. 2, An Applied Psychology of Religion and Spirituality. (pp. 71-89). Washington, DC: American Psychological Association.

BECOMING PARENTS & PARENTING CHALLENGES

Chapter 5

Finding Meaning in Infertility, Miscarriage, and Neonatal Loss Laura Lynne Armstrong, Chantal Elward, & Jenna Elward

The intricate process in which a single cell transforms into a complex human being is a story of miracles. Given this, infertility, miscarriage, stillbirth, and perinatal loss are common. Up to 27% of women ages 25 to 29 and up to 75% of women over age 45, who are aware of their pregnancy status, experience miscarriage—or loss before 20 weeks gestation (Kersting & Wagner, 2012). Miscarriage is the most common pregnancy complication, surpassing infertility, which occurs in up to 15% of the population and increases with age (Bushnik et al., 2012). Under these difficult circumstances, many people report inadequate social support, challenges expressing their experience to others, incongruent responses from one’s partner, and minimization of the issue by family, friends, and associates (Black & Wright, 2012; Smart, 2003). Without an adequate social response, distress can be experienced for several years (Smart, 2003). A growing body of both qualitative and quantitative research has explored the negative experience of persons suffering from infertility, miscarriage, stillbirth, and perinatal loss. However, very little research has explored the transformative post-traumatic growth or meaningmaking that can also occur. Post-traumatic growth is a positive psychological change that can emerge from a struggle with highly challenging life circumstances (Tedeschi & Calhoun, 2004). Post-traumatic growth is emphasized in Second Wave Positive Psychology, whereby darker, unavoidable experiences have the potential to lead to meaningful outcomes (Ivtzan et al., 2015). For such meaning and growth to occur, however, self-disclosure in supportive environments and the lack of experiential avoidance are key ingredients (Braband, Faris, & WilsonAnderson, 2014; Kashden & Kane, 2010; Tedeschi & Calhoun, 2004). Experiential avoidance involves disconnection from distressing thoughts and feelings. The paradoxical nature of experiential avoidance is that,

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the more one avoids distressing emotions, the more one’s distress is magnified. Avoidance of thoughts and feelings also hinders the ability to pursue long-term values and goals (Kashden & Kane, 2010). By contrast, openness to experience, including to emotional distress, allows for one to sit with challenging feelings and to think about the situation, or act, in a helpful coping manner. In fact, persons reporting traumatic distress and less experiential avoidance experience greater post-traumatic growth and meaning compared to others who engage in greater avoidance (Kashden & Kane, 2010). Following situations such as infertility, miscarriage, or neonatal loss, the search for meaning is common, as the search for meaning is nearuniversal following challenging life events (Nikcevic & Nicolaides, 2014). If meaning is not found, for example, within seven weeks following miscarriage, then a person is more likely to experience prolongued distress (Nikcevic & Nicolaides, 2014). A critical factor is having adequate social support in response to challenging life events, which allows for the minimization of experiential avoidance and the making of existential sense of the events (Kashden & Kane, 2010). Negative life events challenge core beliefs about the self, other people, and the world. By contrast, meanings discovered restore order, security, and predictability in one’s life (Nikcevic & Nicolaides, 2014). Intense grief or anxiety often accompany infertility, miscarriage, stillbirth, and perinatal loss (Black & Wright, 2012; Whitehead, 2015). These feelings may linger into subsequent pregnancies or be slow to resolve (Black & Wright, 2012), particularly as social responses and stigma can foster experiential avoidance. Such experiences can also threaten a woman’s basic beliefs about fertility and her role as a woman (Gerber-Epstein, Leichtentritt, & Benyamini, 2009). To cope with such an experience, potentially adapt expectations about their “role,” and to make meaning, a support network in which women or men can share their experience with others is often helpful (Gerber-Eptein et al., 2009; Smart, 2003). One new avenue in which to tell the story, to make the invisible visible, is through online parenting blogs or other online mediums, such as Facebook (Whitehead, 2015). Those individuals or couples going through challenging situations can generate a large readership and community: Friends or strangers connect with the story, show compassion, love, and support in these virtual spaces (Whitehead, 2015). Through virtual or other means of sharing, persons experiencing infertility, miscarriage, stillbirth, and perinatal loss can reduce their risk of post-traumatic symptoms and prolonged distress through garnering

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support to minimize experiential avoidance and to enhance meaning making. Furthermore, post-traumatic growth may also occur, as the act of sharing such a difficult experience is often intended to be of service to others: Thus, giving a sense of purpose to the disclosure and to the experience itself (Beck, Chapman, Simmons, Tenzek, & Ruhl, 2015). The following are lived experience accounts of infertility, miscarriage, and perinatal loss. The writers’ intentions were to break the silence surrounding these difficult experiences and to enhance the understanding of the general public and of therapists (or therapist trainees). The research-based themes presented here: Meaning, the role of women and fertility, coping, experiential avoidance, social support, and growth are woven throughout these personal accounts. Chantal’s Story In some ways, I have been prepared for infertility since I was 16-yearsold. I have known for a long time that having a baby might not be something that I am able to do: I have long accepted that it might not even be an option. To be honest, after everything I have been through with my health concerns, the thought of pregnancy was rather terrifying. I was ready to face whatever the infertility roller coaster dealt to me. Or so I thought. Having a baby is generally considered a private affair: From conception to delivery, it’s all about you and your partner. Although there are doctors involved and family and friends around, ideally, pregnancy is an intimate experience. Fertility treatments take that away. Fertility treatments are about medicalization and science, extensive procedures, and countless blood tests. There is nothing romantic about having to fill your bladder to a certain point so that your uterus is in the exact right place for the treatment. Fertility treatment means letting go of preconceived notions that having a baby is some kind of fairy-tale, romantic experience. I’ve dealt extensively with the medical system since I was 16-years-old and diagnosed with ulcerative colitis. Thus, when my husband and I decided to consult a fertility specialist, I was not daunted by this prospect: It was just another doctor to add to the growing list of specialists that I have seen. It meant more tests—very frequent tests—all of which I had become accustomed to with my health concerns. I took this experience with stride at first, but we were just beginning this process.

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Our original test results did not come back overly positive, but with retests, we were officially diagnosed with unexplained infertility. I can only speak from my own experience, but this has to be the most crushing kind of infertility diagnosis. I felt like a failure as a woman, with no meaning or explanation for this problem, and had no hope for a course of action to take. When infertility, or any disease, has a clear diagnosis or cause, there may be clear course of action to take. There is not, and never will be, a one-size-fits-all approach to any kind of infertility. But, at least with a diagnosis, there is at a potential starting place. Since we had no idea of what was causing our infertility problems, we started with Intrauterine Insemination (IUI). IUI involves the doctor injecting sperm directly into the uterus so that more sperm are present in the uterus than would be through natural fertilization methods. The first IUI was the most difficult to get through, with a negative pregnancy result, and the third one was the most devastating. All of our IUIs went extremely well, except for the fact that I was not pregnant. I responded well to the medication, having three to four mature follicles for each IUI session, the sperm was also reportedly in good quality and quantity. Still, I was not pregnant, and this was the part that I was not prepared for. With unexplained infertility, the entire two weeks leading up to the pregnancy test following the first IUI was terrifying. What if we only needed a little extra help and I ended up pregnant with triplets? My family has a history of twin births, so the idea of triplets was conceivable. This thought was all-consuming until we got our negative result. Although this was difficult, we jumped right into the next IUI, which was part of the original plan. The second IUI was the easiest because I had less hope at this point. After the first IUI failed, I realized I was not just going to need “a little extra push.” It was more difficult to handle the negative result on the third IUI. With the first two completed, I still had another IUI to go, but the third one was the last one. After the third negative result, the next step was in vitro fertilization (IVF). What if IVF was also to fail? Having three failed IUIs meant IVF was our best chance at having a baby. The process of IVF, at least to me, holds little meaning: It involves doctors appointments, uncomfortable procedures, and additional medication. What meant something to us was the idea that we were giving it our all to have a family. The science behind IVF has come a long way: Women who are otherwise deemed infertile are able to beat the odds and are often able to achieve something that they would have been

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deprived of 30 years ago. Some couples may still not have a successful outcome, but perhaps, for some, the effort put into having a family is meaningful in itself, even if the outcome is not how they planned: IVF was not a guarantee for us, and it was emotionally draining, but it allowed us to have some hope. IVF seems to be something that people do not often talk about. For me, though, it helped to talk so that people knew what was going on in my life: If they did not know, they could not be supportive. In silence, I would have felt more alone. Not everyone understood what I was going through, nor was everyone willing to talk about it; those that were willing to listen, however, were a great source of support. Most of my friends were very supportive, but some were not willing to try to understand. It can be difficult to deal with something that makes you feel so alone. There is a huge stigma surrounding infertility and treatments, but people need to start talking about this in order to break down barriers. We moved on to IVF around the same time that the provincial government changed the funding rules. We were hopeful that we might not have to pay out of pocket, but were also willing to make the financial sacrifice. What we were not willing to do was wait three years to get provincial funding: Three more years of waiting with no assurance of success. Our fertility clinic used a randomized algorithm based on demographics to select IVF patients who would receive funding. When we were not selected in the first couple rounds, we decided to proceed anyways. We knew that IVF was potentially our best chance for pregnancy and we could begin immediately if we paid out of pocket. In January, we began our first IVF cycle and it was a complete disaster. I have often had reactions to various medications and IVF was no exception. Throughout the IUIs, I had had a couple of reactions to medications, but the medical team was able to switch one medication for another. It was not so simple with IVF. The first portion of my IVF treatment protocol involved regulating my ovaries through the use of birth control. It may sound counterproductive to use birth control when trying to conceive, but this medication is used to calm the ovaries prior to over-stimulating them. I did not get through this part of the protocol before my treatment was cancelled. It was too difficult to continue, as I had several different reactions to the medications. Unfortunately, there really was no good medical explanation as to why I could not tolerate these medications. I did not have a full allergic reaction because I did not have hives, but my entire body felt itchy, so something was clearly

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amiss. After many medical appointments and a discussion with a very knowledgeable pharmacist, a plan was put in place to hopefully counter any further reactions. It is exceptionally frustrating to continually feel like my body is working against me. Every step of the way, I was constantly worried about what might happen next to get in the way of a successful conception and pregnancy. I was not going to let these worries stop me from trying, but I allowed my worries to restrict my life. I put a lot of things on hold that I normally enjoy doing, out of fear that anything might interfere with conception. It can become difficult to cope and feel positive when making a number of lifestyle changes over a short period of time. I stopped going to the gym, which I used to do frequently, gave up running, and I worried about putting myself in any situation that might induce allergies. Going through the process of IVF made me think about, and worry about, everything that I was doing. Although IVF gave us hope that we would possibly be able to conceive children, it was hard to keep that hope going when we did not know if we would be able to start IVF again with a successful medication regimen. We continued the process and were able to figure out a solution. Physically or emotionally, IVF was not easy. When everything looked bleak, choosing not giving up, and looking to the end goal, was a way for us to hold on to something. If we had chosen to let go, or had been forced to, if my body had not tolerated any of the medications, I do not know how we would have coped. IVF is not a casual decision that is made, and it is a commitment that we were committing to. It meant that I had to be stronger than I thought I was. It meant I cried more than I thought I would. It meant that I had to persevere in the face of even more disappointment, and it meant that my husband and I had a chance at something greater than just the two of us. We started round two on a different ovarian regulation protocol: A successful down regulation protocol. This was the easiest part of the entire process: All I had to do was take medication for a month. With the down regulation portion under control, we moved onto the actual IVF portion of the protocol. The first couple of days of injections were tolerable but they became uncomfortable and unpleasant after a few days. I was lucky enough to have numerous eggs, but that also meant that, instead of my ovaries growing one follicle, they were growing multiple. During this process, I did not want to pretend that I was a functional human being, so I took a week off work. I was off from the fifth day of

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my injections to a few days after my egg retrieval. For about half the time I was off work, I likely could have still been working, but I chose self-care in order to manage my stress. There are so many things during this process that can cause worry, I did not want to add work stress to that. Because my ovaries were oversized, it got to the point where it was uncomfortable to move. At retrieval, they were able to retrieve 43 eggs, 36 of which were mature. We sent all of the eggs for testing and, in the end, we yielded five viable frozen blastocysts. This is an amazing number and means that I never have to go through the ovarian regulation and egg retrieval aspects of IVF again. IVF is full of waiting. Waiting for your first ultrasound to make sure you are ready, waiting for your first injection, waiting for your next ultrasound to make sure things are progressing, waiting for your egg retrieval date, waiting for the results about the embryos, waiting for further test results on the embryos, etc. I could go on. It seems like all I did for the several months was wait. It was difficult to wait for something to happen that was out of my control, especially something that I wanted to have happen years ago. It creates tension and can be very stressful on the couple relationship and on other family and friend relationships. Two months after the IVF process began, we started our first frozen embryo transfer. This part was thankfully a more tolerable part of the entire IVF process: Less blood work, fewer ultrasounds and injections, but still a lot of medication. The side effects of the medication were not pleasant, though, so even though the process was less time consuming, it was still challenging. The embryo transfer itself was a pretty quick and painless procedure, much easier than an egg retrieval. We were prepared for our IVF attempt to be unsuccessful, given our “unexplained infertility” and previous challenges with the IUIs. During the days of waiting before we received the results of our pregnancy test, it was hard not to worry about a negative test result. We also held hope for a positive outcome. So many scenarios played out in my mind during the eight days that we had to wait. This was a stressful time, more so than any other wait we had to endure. Eventually, we received the call and the result was positive! We had given conception our best chance, and it had paid off. Receiving the positive news was both exciting and terrifying at the same time. In the face of so many disappointments along the way, it was hard to believe that what we worked so hard for had actually happened. Everything was about to change.

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As much as pregnancy has been something that my husband and I have been trying for over a number of years, I did not actually expect it to happen, even though I held high hopes. With ulcerative colitis, and the associated surgeries and scar tissue, it was entirely possible that conception and a successful pregnancy never would happen. I was surprised to receive the positive result. The pregnancy hormone results were “low,” but it was still early. Thus, even though we had a positive result, the next four days were still worrisome. It could have gone either way: Pregnant or not. Once I received further confirmation that I was pregnant, it took a while for me to actually believe that I was pregnant, and to feel as though I was pregnant. The addition of daily morning sickness and pure exhaustion helped to break the illusion that pregnancy was simply a “dream.” The first 12 weeks of pregnancy, when there is the most risk for miscarriage, were the most nerve-wracking. Having an IVF pregnancy, we had the option of chromosomal testing. We proceeded with this, as 70% of miscarriages are due to a chromosomal abnormality. Chromosomal testing meant that we had a higher chance of a successful pregnancy. Even with this testing, I never stopped worrying about miscarriage since we first heard the news. When so much time and energy is put into something, the stakes are higher (or at least I felt like they were). I ended up in the hospital with an ultrasound technician trying to find a heartbeat at just past 6 weeks into my pregnancy, due to some bleeding. This was terrifying. However, luckily, so far, everything was progressing as it should. In my third trimester of this pregnancy, some of the worry is starting to subside. It is being replaced with an all new kind of stress, but one that I welcome. Right now, I am trying to figure out everything we are going to need to properly care for a tiny human. We are allowing ourselves to believe that this is really happening and we are starting to prepare for it. Looking back on my IVF experience, there is not much that I would choose to do differently. It involved quite a bit of time, stress and money, but we are where we are today because of it. It was a difficult and very emotional journey, but one that has lead to a meaningful outcome. Throughout this process, I have had some great support from my friends and family. Infertility can be isolating, but many people were willing to talk about it. I chose to share my experience, despite the stigma, so that I would not be alone and so that I could better cope with my distress. It has also been meaningful to share my experience so that

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others may be able to understand and respond to those going through infertility and IVF in a helpful, supportive way. Most people that I know have not been through IVF themselves, but they were still empathic and supportive. I will not lie and say that I am enjoying pregnancy, because so far it has not been a pleasant experience, but I am looking forward to what it will bring. Having been through IVF, as I approach the end of my pregnancy, I can look back at the experience. Although the process of IVF was uncomfortable, sometimes painful, and stressful, I do not have any ill feelings toward it. In fact, it means that, next time we want to have a baby, we have a sense of control and a plan for how to proceed, despite our “unexplained infertility.” With both my pregnancy and existing chronic illness, it has been hard to have any sense of control, and IVF has given that control back to me, at least in a small way. Jenna’s Story It is hard to know where to begin my story. When asked to write this, I was honoured and thought it would be a good way to help others understand the experience of miscarriage and perinatal loss. Yet, I did not anticipate how challenging it would be to sit down and write. My story is not an easy one to hear and most people seem to have difficulty knowing what to say when they hear it. The also often say “well-meaning” things that make things worse. Given this, I often stay silent, change the subject, or hide my grief. Writing this story means that I am sharing what I have often kept hidden. My story is not a happy story. It is not something that I will just “get over.” Nor should I ever be expected to. Yet, it sometimes feels like others expect me to get over it, based on their comments. I have been through the worst experience for a parent: Losing a child. When my husband and I first decided to start trying for a baby, conception happened right away. We went to the doctor, ate properly, and did all the “right things” for a healthy pregnancy. We had our first ultrasound at 19 weeks and found out that we were having twins! This was big news. I felt special. I was excited. I pictured my life with twins from birth to university and everything in between. When people asked me the gender of the baby, I would say “boys” and then I would watch as the wheels in their head started to turn. We were going to have an instant family of four.

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As I reached my third trimester, I was monitored more closely, as twins are considered to be a “high-risk” pregnancy. Around 29 weeks, my blood pressure started to rise. As a precaution, I was given steroids to help with the development of the babies’ lungs. At 31 weeks, proteins were found in my urine. Along with high blood pressure, protein meant that I had a medically concerning pre-eclampsia that required emergency intervention. I was rushed to an emergency care hospital in an ambulance. After being admitted and meeting the medical team, they took me for an ultrasound and found out that blood was not flowing well to one of the twins. A medical resident came in to speak with my husband and me. She said, “When we do your c-section tonight...” and then I lost it. I was not prepared. They did not talk about options with us, or about risks and benefits; they did not try to obtain our informed consent. Instead, they just decided that this was the course of action that they were taking. Once we calmed down after our initial shock, we spoke to the obstetrician-gynecologist (OBGYN), who informed us that, given the restricted blood flow and the pre-eclampsia, it was best to proceed with delivery. The twins and I were monitored closely and just before midnight, I was wheeled into the operating room. The babies were both “fine,” unless I laid down on my side: Just a little “hiccup” though, nothing to worry about. In the operating room, there were a slew of nurses, physicians, and residents. They laid me down on my side to insert the epidural. When I sat back up, they could not find “J’s” heartbeat. This was the first indication something was seriously wrong. Quickly, they delivered “M” and we heard his cry. I was happy. They delivered J and we did not hear his cry. Nobody told me that anything was wrong: They just whisked J away. Later, I found out that he had been taken into the resuscitation room. They sewed me up and pulled my husband away. I was brought into the recovery room, where I had no idea what was going on or that anything was wrong. My husband came back looking broken and he could not talk about what had happened. J had been resuscitated and, after two minutes, revived. After that, he stopped breathing again. It took them 20 minutes to revive him again; all the while, my husband was watching this. To this day, he is still traumatized by this experience, has nightmares, flashbacks, and experiences anxiety in hospitals. J was put on life support, while M was doing fairly well. The seriousness of the situation was finally explained to me and we were given the

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option to hold both babies, due to the special circumstances. The experience of holding both my boys was both awful and amazing at the same time. I cannot think about this time without tears streaming down my face and sobs wracking my body. Pictures were taken as we held both babies in our arms against our chests. They were so tiny and fragile. Those pictures mean a great deal to me and, for those, I am thankful. Following the photographs, we went back to our room to try to get some sleep. We woke up around 6am and started to call the family to let them know what was happening. To be honest, I was not really sure what was happening or how to tell them. The physician came in to tell us that we had a very difficult decision to make, but we were not ready to make it. They ran some more tests and, eventually, we were told that J did not have any brain activity: We decided to take him off life support. The family came to meet J and M and say their goodbyes to J. It was a beautiful moment where our family was around my bed holding our boys. I am the mother of twin boys. We then took him off life support while everyone waited outside. I held J close as he passed. It was the worst moment of my life. I cannot even explain the emotions that I felt and still feel. Nothing felt real. Everything happened so fast that, even now, when I look back, I still do not always know if I have the memories right. The fact that I am uncertain about whether I have an exact photocopy of those moments in my mind devastates me. I also have a lot of “what-ifs” in my mind. I always wonder “what if” I had done something different, would J be here today? Part of me says yes and part of me says no. J had an aortic aneurism. The aneurism could have burst at any age, but it happened at the time of delivery. There were months of guilt and feeling defective while we waited for genetic testing and autopsy results. People say, “It was not meant to be.” But, these things do not happen for a reason. I will not get over it in time. Time does not heal all wounds. Try telling me otherwise and I will think that person is being very insensitive. This is an open wound that I have learned to live with. I carry it with me at all times. With the hardest day over, there were still many more to come. I spent six days in the hospital and M spent over a month in the neonatal intensive care unit (NICU). When he was strong enough, he was moved to the NICU at another hospital. M’s time in the NICU kept us busy and focusing on the beautiful baby boy that needed us. This was about the only thing that kept me

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going during this time. I became obsessed with my routine of hospital visits in order to push away my grief. However, when we finally brought our baby home, we had to deal with becoming new parents, as well as our grief: There were two cribs, two high chairs, two of everything, and all of our dreams of being parents of twins. It was hard then and I still grieve all the time. I became a “hermit” and did not leave the house for about five months, other than when I had to out of necessity. The only friends I had were those who made an effort to see me. Others, who perhaps did not know what to say, kept their distance. I hated the pitying looks—the head bob and pursed lips. I still do. It was “the sympathy look.” When people would say they “understand,” it made me so angry because they did not understand. How could they? They had not lost a child. When people compare the loss of a pet to the loss of my child, it makes me angry still. “I’m so sorry” or “my condolences” has little meaning to me, even though there is little that anyone else can say. In this experience, the next step we had to endure was J’s funeral. The funeral was hard, but cathartic. I made a baby book with pictures and other mementos from the hospital. I put the pictures on DVD’s for family. These small acts of putting together the memories of J, as well as his funeral, actually helped me quite a bit. There was a room full of family and friends to support my husband and I, and they got to hear our memories of J. After the funeral, we had J cremated. He was put into a picture urn and a heart urn. We keep both close to us and, every night, I kiss J’s urn goodnight. Today, I find that everyday situations are the hardest. I wonder how life would be with twins, and what certain situations would be like with two boys. Other days, when out, I sometimes run into someone who knew that I had been pregnant with twin boys, and they ask where my other son is. Even years later, this is particularly hard, as I have to go through the whole ‘my son passed, sympathy, awkward silence routine.’ Holidays are difficult too, but they are often so busy that there is little time for my mind to wander. A few years passed since J died and we were finally ready to start trying again for another baby. Again, I became pregnant right away. I was so excited and we started to tell immediate and close friends about the pregnancy. Unfortunately, by eight weeks gestation a heartbeat was no longer detected. I miscarried. I was not as devastated as I thought I should be and this made me feel guilty. I had been through a worse

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situation, so this loss did not affect me as much as it might have otherwise. Following the miscarriage, I bled for two straight months. Then, I did not menstruate for months after that. My body was a rollercoaster of hormones and this affected my emotions. I had no idea what was going on and everything felt out of my control. To add to this challenging experience, on Mother’s Day, I received another surprise: A second miscarriage. This time, I did not even know that I had been pregnant. It was a shock to me. I felt defective. However, within weeks, I became pregnant again but, because my body had been through so much, I did not recognize the symptoms right away. I think my friends may have realized that I was pregnant before I realized it myself. When I finally knew that I was pregnant, I did not tell anyone at first. We had a dating ultrasound and I found out that I was eight weeks pregnant. At this time, they found something else in or on my fallopian tube: It was twins again. Only this time, what I had was a heterotopic pregnancy: One ectopic (fallopian tube) embryo and one in utero. I was told to go to the hospital emergency department right away and I was not allowed to drive myself. My husband was at home with our son, rather than with me at the time, as we thought I was just having a routine ultrasound. I was admitted to the hospital on a Thursday night. On Friday, they ran many tests including an MRI and an ultrasound. The ultrasound revealed that the baby in the tube no longer had a heartbeat, which made it easier somehow to bear that it would be removed. My husband came to visit me once with M, due to his experience of anxiety around hospitals. I was there three days for the completion of an emergency tubal ligation to extract the pregnancy in the fallopian tube. I still do not know how I feel about this child of mine or how attached I am to it. It is a strange feeling not to have an answer to this. At that time, I still had a baby in utero. Medical professionals did everything that they could to make sure she would survive. They did an excellent job at keeping her alive. I was classified as “high risk” and I had a high risk doctor, as well as the surgeon, follow me. I was scared and anxious for my entire pregnancy. This was the hardest pregnancy for me. I did not let anyone know that I was pregnant unless they saw me and it was obvious to them. I did not talk about it. After so many losses, I did not truly believe that it was going to happen. I was putting up a front of excited, but our household was very nervous.

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When people asked about the gender of the baby, I told them that I was having a girl. Often, they would say of that I was going to have the dream “millionaire family.” My dream is for healthy kids. My dream is to not have a kid who passed. I was left with one surviving boy so that the addition of a girl made a “millionaire family.” Simple, everyday statements are challenging to hear because of what has happened in my life. Following the repeated miscarriages and back-to-back pregnancies, my body took shape quickly. I would tell people how far along I was and they would ask if I was having twins. That question also hurt quite a bit and brought back a flood of emotions. “T” is a beautiful baby girl who we are lucky to have and love with all our hearts. That being said, my thoughts are bittersweet. First off, one of my kids had to die for her to come to be. I think of this every time someone says something about how lucky I am to have a boy and a girl. It is an awful thought, but it is there often. I also think that maybe she would be here no matter what, even if J had survived. I have a lot of what ifs in my mind. Grief is a funny thing. Some days you go about your business and you are fine. Other days are really hard. The grief that comes from the loss of a child will always be there for me and it is not something that will heal with time. It is something that I move forward from, one foot in front of the other. These experiences have helped me to become more aware of those I love. Through grief, I have been able to connect with friends on a level I could not before. I have grown to be less ignorant and have learned how to recognize what to say; how to be more sensitive to others’ experiences. How many kids do you have? Is that your first? Small talk often made by strangers and acquaintances to start a conversation. Innocent questions for most. For me, though, “how many kids do you have” is one of the hardest questions to answer. My answer depends on whom I am talking to. I have six children, technically. Most of the time, I answer that I have two at home. I will sometimes say that I have three; then, that always leads to further questions that I do not always want to get into or to people talking about how busy my life must be. I have two sets of twinless twins and have had two miscarriages. I have a rainbow baby (baby born after a miscarriage). Any way that you look at it, I really do not have a good answer for that question.

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Conclusion In contemporary society, fertility issues, miscarriage, and perinatal death are often met with ignorance or well-meaning, but harmful platitudes. Everyday “small talk” questions made by strangers and acquaintances, or inappropriate responses from friends, can reinforce distress and suffering in silence. This can prolong the complex grief experience and make it more challenging to “move forward” with living. As with most grief, one does not simply “get over” this experience. However, social responses involving listening in an empathic, sensitive, non-judgmental manner, can help a person break free from isolation and feel supported in moving forward. Understanding the lived experience of persons with such issues may also allow for more sensitive interactions with others, preventing seemingly innocuous questions that end up re-traumatizing a person (e.g., “Do you plan on having children?”). Chantal has been able to find appropriate support from friends and a sense of meaning in a future where plans for further children are realistic. Jenna struggles with everyday situations and comments that bring grief back to the surface. She has found meaning in deeper relationships with friends, stemming from her more empathic response to their situations, and a genuine desire to listen. Although these experiences of posttraumatic meaningful growth may not seem profound in comparison to the tremendous loss and distress experienced by Chantal and Jenna, they are a kernel of good—a small measure of solace in the darkness. It is such a kernel that acts as a life raft, something to hold on, in order to walk forward, one step at a time from darkness into truly living through enjoying meaningful moments in everyday life. Reflection Questions 1) Since it may be valuable for individuals or couples to have a place to discuss issues surrounding infertility, miscarriage, or neonatal loss, reflect on some ways in which communities could create such a service. In particular, how could such a service be created in a manner that might be most likely to enhance posttrauamatic growth in people who have experienced a loss? 2) What were some of the coping strategies used by Chantal and Jenna? What are some other strategies that these women could use to process their situation?

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Glossary Aortic aneurism: A bulge in a section of the aorta, the body’s main artery. As the aneurism creates an area that is weak and overstretched, it can burst, which is often fatal. Experiential avoidance involves disconnection from distressing thoughts and feelings. Heterotopic pregnancy: Both in utero and extra-utero (ectopic pregnancy) pregnancies occur simultaneously. Miscarriage: Loss of an embryo before 20 weeks gestation. Openness to experience involves an attitude of curiosity and imagination, a desire to learn new things, attentiveness to one’s own and other’s feelings, intellectual curiosity, and openness to discovering who we and others are. Post-traumatic growth is a positive psychological change that can emerge from a struggle with highly challenging life circumstances. Pre-eclampsia is a pregnancy complication involving high blood pressure and signs of damage (e.g., protein in urine) to other organ systems, often the kidneys. Left untreated, it can be fatal for the mother and infant. Rainbow baby: Baby born after a miscarriage. References Beck, C.S., Chapman, S.M.A., Simmons, N., Tenzek, K.E., and Ruhl, S.M. (2015). Celebrity health narratives and the public health. Jefferson, NC: McFarland & Company. Black, B.P., Wright, P. (2012). Posttrauamtic growth and transformation as outcomes of perinatal loss. Illness, Crisis & Loss, 20, 225-237. Braband, B.J., Faris, T., & Wilson-Anderson, K. (2014). Evaluation of a memory book intervention with orphaned children in South Africa. Journal of Pediatric Nursing, 29, 337-343. Bushnik, T., Cook, J., Hughes, E., & Tough, S. (2012). Seeking medical help to conceive. Health Reports/Statistics Canada, 23, 7-13. Gerber-Epstien, P., Leichtentritt, R.D., Benyamini, Y. (2009). The experience of miscarriage in first pregnancy: The women’s voices. Death Studies, 33, 1-29. Ivtzan, I., Lomas, T., Hefferon, K., & Worth, P. (2015). Second Wave Positive Psychology: Embracing the dark side of life. London: Routledge. Kashden, T.B., & Kane, J.Q. (2010). Post-traumatic distress and the presence of post-traumatic growth and meaning in life: Experiential avoidance as a moderator. Personality and Individual Differences, 50, 84-89.

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Kersting, A., & Wagner, B. (2012). Complicated grief after perinatal loss. Dialogues in Clinical Neuroscience, 14, 187-194. Nikcevic, A.V., & Nicolaides, K.H. (2014). Search for meaning, finding meaning and adjustment in women following miscarriage: A longitudinal study. Psychology & Health, 29, 50-63. Smart, L.S. (2003). Old losses: A retrospective study of miscarriage and infant loss 1926-1955. Journal of Women & Aging, 15, 71-91. Tedeschi, R.G. & Calhoun, L.G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry, 15, 1-18. Whitehead, D. (2015). The story God is weaving us into: Narrativizing grief, faith, and infant loss in US evangelical women’s blog communities. New Review of Hypermedia and Multimedia, 21, 42-56.

Chapter 6

Raising Children with Special Mental, Developmental, and Physical Health Needs Ian G. Manion

The empirical and grey literatures are filled with information about the lived experience of parents raising children with a variety of special needs. Such accounts relate to the characteristics, circumstances, predictors, outcomes, as well as the joys and challenges of parents raising children with special developmental, physical, as well mental health needs (Thomas, Dowling & Nicoll, 2011; Lopez, Clifford, Minnes, & OuelletteKuntz, 2008). This chapter brings together both a personal and a professional perspective in identifying key themes in raising children with special needs. As a child psychologist and researcher who has worked in both the areas of developmental disabilities and mental health, I would like to share the experience of leaving one’s professional hat aside when you become a parent of a child with the types of challenges that you have researched and supported clinically in the past. Textbooks and research studies just seem to miss the point when the realities of parenthood in challenging contexts become your own day-to-day existence. Given the focus on lived experience, the following will be a first person account of just such a context. A personal story: I was a graduate student in clinical psychology when my wife and I decided to embark on the journey that is parenthood. Life had been planned out with a clear path that included studies, parenthood, career and a growing family. It was to be the first grandchild for two extended families and, as such, expectations and anticipation were high. In some respects, the literature might describe this as a premium pregnancy (precious, priceless, precarious) with both extended families making significant emotional investments in its arrival. This term has been used to describe the pregnancy following a miscarriage (Covington & Hammer Burns, 2006). I had worked for years with children and even had an initial internship in an infant stimulation program for infants with various developmental challenges. Such programs track the functioning of infants with various delays and help to teach parents how to enhance their child’s physical and cognitive functioning through various games

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and exercises. My primary area of study and research was also in the area of children with developmental disabilities. We were invested in having a healthy child and did all of the right things to reach this goal (e.g., prenatal care, prenatal classes). We even participated in an early trial of the triple prenatal screen and, because of this, had had conversations about what our decision-making process would be if our test came back positive for a child with a genetic abnormality. Our results screened negative. We were firm believers that good things were supposed to happen to good people. Our beliefs were severely challenged when our first child was born with Down syndrome. We were one of the very few false negatives in the above-mentioned trial. Many parents speak of the details that they can recall at the time of their child’s diagnosis as if the scene is forever etched in their memory. I can remember the faces of the student nurses looking at us with sad looks in their eyes as our daughter was whisked away right after she was born. I recall waiting in a large dark empty ward with my wife while staff tried to track down our family doctor to break the news to us. I remember supporting him as he struggled to give us the news. This really emphasizes the critical importance of the sensitivity that is required on the part of the professional at the time of initial diagnosis. It is a critical time in a family’s experience of disability. It sets the tone for understanding, perceived support, and acceptance. This was the early 1980’s and at this time, unfortunately, much of our knowledge of Down syndrome was based on the literature from the seventies and earlier. Individuals with developmental delay were still being institutionalized. Furthermore, I had been working with children who were experiencing more severe developmental delays which skewed my understanding of Down syndrome. Children with Down syndrome were not typically integrated into community schools and programs. Their full potential with infant stimulation was just starting to be recognized. Many children with Down syndrome experience significant health concerns (e.g., heart problems) and our daughter Melanie had a few. A congenital nystagmus affected her vision and required her to wear glasses from the age of 18 months. A choanal atresia blocked one of her nasal passages requiring two unsuccessful surgeries over the next several years. She had a knee that would hyperextend and pop out of place at times due to poor muscle tone. Inspite of these fairly minor physical anomalies we were lucky, as she was quite healthy. Developmentally, however, we still did not know what to expect. From a very early age,

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we were told that Melanie might not talk, read, or write. Our lives were destined to be very different from the path we had planned for ourselves. How does one find meaning in such a dramatic turn of events? Early on, we realized that we were grieving the child that we had anticipated having. Broadly speaking, we were experiencing the stages of grief described by Kubler Ross (1967) and others. There was early shock and denial as specialists were looking to confirm the initial diagnosis. Maybe they had made a mistake at first and they would now tell us that everything was ok? Actually, the initial specialist who examined Melanie the day after she was born came to inform us that he was fairly positive that our “son” did not have Down syndrome. This did not instill much faith for us in the medical profession given that we had just had a daughter and not a son. The next specialist arriving hours later confirmed what we now suspected… we were now the parents of an infant with Down syndrome. In some respects, we were quite lucky in that there was a name for Melanie’s condition and a general understanding that such a genetic abnormality was just the luck of the draw rather than attributable to something that we as parents had done wrong. The fact that she was diagnosed at birth took away a lot of the uncertainty that many parents face when their apparently healthy child is born only to show significant problems in their development over time with no clear explanation or frame of reference. We had a label that we could research, books that we could read, and something concrete that could be communicated to family and friends. What would await us however would be as hard to predict as it would for many other parents with children who grow and develop with their own inherent and acquired strengths and weaknesses. Parenting is a leap into the unknown at the best of times. Clearly there was some anger, as we were young parents who had done everything right prenatally to an almost obsessive degree, given my area of study and research. We had two friends in their early forties (an age considered to be at higher risk for conceiving a child with Down syndrome) who gave birth to healthy babies around the same time that our daughter was born. There seemed to be a lack of fairness in all of this. The reality is that, even if the risk is higher with advancing maternal age, there are many more children with Down syndrome born to younger mothers based solely on the frequency of births in that age group. Honestly, we did not care much for statistics at that point. As new parents, we bargained around what our future held with respect to health concerns, functioning, and family dynamics. There

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were periods of sadness but also great joy. Melanie was first and foremost a little baby who required love and care. There was really no choice but to accept that our situation was going to be different from what we expected, but also very different from anything our family and friends had experienced. Different is not bad but just a recalibration of expectations, priorities, and subjective experiences. There is a wonderful analogy that was shared with us when our daughter was first born. It is called “Welcome to Holland”, and was written in 1987 by Emily Perl Kingsley. She is a special needs parent who describes her parenting journey as being like getting very excited for a vacation to Italy (parenting expectations) only to find that she has landed (permanently) in the quaint country of Holland (reality of special needs parenting). It’s very poignantly written, and definitely tells a story of the adventure that special needs parenting can be. It did resonate for us as parents. Our lives were forever changed but in as many good ways as challenging ways. This speaks to the subjective meaning that we give to each and every one of our life experiences. How we choose to frame our circumstance will ultimately determine how we adjust and cope. This fits well with Victor Frankl’s views in Man’s Search for Meaning (1959). One can argue that having a child is always a bit of a crapshoot and that the expectations that we hold can be challenged in countless ways. I remember one parent coming up to me and telling me how lucky I was to have a daughter with Down syndrome. She said that her own 16-year-old daughter was on drugs and had run away from home. She didn’t know from one day to the next whether her daughter was alive or dead. It reminded me of the various struggles and challenging circumstances that many families face. Life in many ways became very relative. It became clear to us that our life was going to become more programmed. There were to be many more appointments with doctors, psychologists, speech and language pathologists and a bevy of other specialists. The advent of infant stimulation meant that, to help Melanie reach her full potential, we needed to engage in daily exercises with her. Essentially, we were helping her learn to do things that most children would learn to do more independently (turn over, grasp objects, track visually). We had to wake her up to feed her and work hard to keep her awake. Our mind set had to shift from what Melanie might not be able to do to what she would be able to achieve with support. The reference for her success changed in that now we wanted Melanie to be one of the children with Down syndrome that would be able to

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function best. Honestly, there was a sense that if she did not do well it would be because we did not work hard enough at her programming or that we did not advocate hard enough to create opportunities for her. Perhaps every parent feels that pressure in many ways. We felt it very acutely. There is no denying that we experienced a great deal of stress in our early parenting role. Nothing could really be taken for granted. We experienced stigma for the first time as some friends with children around the same age felt quite uncomfortable around Melanie and we drifted apart. An 18-month old with glasses who looked a little different also attracted some interesting attention in grocery stores and malls. Melanie’s disability was quite visible and we had to get used to how people related to her. We had to understand our own issues about feeling different as parents and put aside any “self-stigma” that could potentially drag us down or contribute to our isolating ourselves. I think that part of our denial process was an initial reluctance to have anything to do with parent support groups. We pictured these as being places where parents would go to cry on each other’s shoulders and we were not prepared to open our lives up to that. The need for information and to learn from the experience of others did eventually lead us to a group that provided wonderful support to us over the next couple of years. We came to understand the true value of social support. Our extended families of origin (i.e., our own parents and siblings) definitely rallied around us and embraced Melanie with love and acceptance. We were extremely fortunate as not all parents have that level of acceptance and support so readily available for them. Although both living in a different city, the grandmothers joined a local parent group to better understand Down syndrome. Most of our friends were still childless and we were invited to countless social events where Melanie was included and doted upon. Friends also offered to care for Melanie so that we could get away as a couple. We met other parents with children who had Down syndrome and were able to share experiences, information, joys and challenges. We felt less isolated and less different than we had initially. Slowly we were settling into a new rhythm. Our conceptualization of family had changed. Although we originally wanted to have more children, it now became a different kind of conversation. What if we had another child with a disability? Statistically the risk was higher. We would now have to undergo prenatal testing and what would our decisions be if a second pregnancy resulted in a fetus with Down syndrome? Would we be able to manage two children

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with disabilities? If we did not proceed with the second pregnancy upon learning of a genetic abnormality would that negate our feelings for Melanie? Who would care for Melanie when she was older and when we were likely gone as parents? Is that a burden to put on a sibling? How many children should we have so that the responsibility could be shared? I don’t think that most parents have to process such things when they plan for more children to join their family. Prenatal testing can be a very stressful process for many parents (Acharya, 2011). When you are already considered to be at risk and aware of the limitations of such testing (i.e., false negatives, false positives, potential risk to the fetus) the process can be even more difficult. The stress of waiting for the results of prenatal screening (amniocentesis) was excruciating. In spite of all of this processing and angst, Melanie ended up with two healthy siblings, a brother Matthew (3 years younger) and a sister Rachael (6 years younger). Our family slowly grew. In discussing our early adjustment, I referenced the stages of grieving. Although this model might help frame our initial experience as new parents with a child with a developmental disability, the ongoing challenges and stress of raising a child with such a difference might fit better in a model called “chronic sorrow” a term coined by Olshansky (1962). Chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children or other loved ones who have chronic conditions. At its core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. It is the emotionfilled chasm between “what is” versus the parents’ view of “what should have been.” It does not really go away but rather resurfaces at certain key periods in the child’s development or in the life stages of a family. If and when a crisis or event occurs which magnifies the loss and disparity between reality and the life once dreamed of, it can trigger a return of the feelings of sadness and loss (see figure 1). Upon reflection, there are a number of periods that prompted a resurgence of the feelings that had initially surfaced when our daughter, Melanie, was born and first diagnosed. They were not as intense or as prolonged but they were real nevertheless. Ironically one of these periods was when Melanie started an integrated preschool at age 2 and a half. After lobbying for her to join this setting, we had to adjust to seeing our very young daughter starting an organized program well before we were fully prepared for it. Watching her interact with same-aged peers without disabilities highlighted some of her challenges. The birth of her brother also reinforced just how quickly infants learn without constant

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Figure 1. Chronic Sorrow

programming. We saw Matthew acquire skills much quicker than his sister ever had. We had hoped to have Melanie follow a group of peers though elementary school and again had to fight to have her accepted into our community school for kindergarten. Although she was eventually accepted, she was the first child with such a difference in this school. The teacher and the setting had difficulty adjusting to her needs and the setting was a failure. She was soon accepted into a “special program” in a different school. There was an experience of loss as Melanie could not make it in the “normal” world, although this was more our issue as parents than hers. Perhaps we were using the wrong frame for success and contributing to stigma that need not be there. The reality is that Melanie was in this special program for 2 years where she learned to read and write and her speech and language progressed beautifully. She was happy and made some lifelong connections. She returned to a different community school and, with supports, continued with the same peer group in a mainstream class for the next 7 years. Up and down, round and round, the roller coaster ride would go on. There were other key periods where Melanie’s differences were more apparent and we had to revisit some of our coping. Younger siblings started asking about why their sister was different. Thankfully, Sesame Street had also been integrating children with Down syndrome on their

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program, which gave us all a point of reference and an opening to conversations. Matthew soon caught up and surpassed Melanie developmentally and eventually so did her sister Rachael. The younger brother became the functional eldest, even being in the same grade as his sister for a while with similar peers. Matthew also had to learn how to deal with peers who did not know how to behave around his sister. For the most part, peers were fine and very accepting. There were times when Matthew had to deal with some ignorance and discrimination but he had friends and family who supported him. We learned very quickly that exposure can decrease stigma (Rillotta & Nettelbeck, 2007). When people got to know and spend time with Melanie they really enjoyed who she was and saw the person not the label. She had an outgoing nature and a very social attitude that helped greatly. Being fairly shy myself, Melanie was often the one who broke the ice socially by making the first step in new situations. She still likes to introduce me as her father to strangers in grocery stores, doctors’ offices, and pretty much any public situation that you can imagine. Academically, Melanie eventually reached a plateau in Grade 8, no longer able to keep up with most of the mainstream work. At her instigation, we moved her to a special program in a different high school that allowed her to continue to learn more adaptive skills at her own pace eventually obtaining a high school certificate. She stayed there until her 21st birthday, which resulted in her brother graduating from high school before she did. This created another moment to pause and reflect… and still there would be more. These included proms that were not attended, siblings learning how to drive, summer jobs and other normal developmental milestones that were all a little different for Melanie. Perhaps you can start to get a sense of how and when parents get reminded of how things are just a little different for their child with an exceptionality. In many ways, we had three children, one of whom happened to have Down syndrome. I mostly left the field of developmental disabilities as a career path, as it was too much for me to live and work in this world every day. Other professionals have been able to use their lived experience better in their work life. My work gravitated towards supporting children and youth with chronic illnesses and then on to helping those with mental illness. A lot of the issues faced by these families are similar but perhaps not as close to home for me at the time. Melanie’s mother chose to stay at home to provide a greater degree of support to all of our children and especially to Melanie. This is not

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at all uncommon in families where there is a child that requires additional care. Many families do not necessarily have a choice so we were very fortunate to have options. Balancing in-home care needs and work responsibilities can present many challenges to families especially when a family member has a disability (Fidler, Hodapp, R., & Dykens, E.M., 2000; Kuhlthau & Perrin, 2001; Trute, Hiebert-Murphy, & Levine, 2007). Available literature highlights the greater likelihood that a parent, usually the mother, remains at home to ensure proper care for a child with a severe disability (Parish, 2006; Porterfield, 2002) or has their employment significantly affected by their child’s disability (Statistics Canada, 2006). The financial repercussions of this for many families can be quite burdensome. In their sample of 18 mothers with children with intellectual disabilities in the UK, Shearn and Todd (2000) described how mothers worried about their ability to successfully fulfill the dual responsibilities of meeting their children’s caregiving needs and work demands. Depending on the nature and severity of the disability, case management can sometimes become a full-time job in and of itself. In the case of a single parent, the choices and options may be even more challenging, contributing to a level of burden that should not be underestimated. All of our children were different, each with their own personality, strengths and weaknesses. It was important for us to attend to the needs of each of our children. It is easy for siblings to get lost in the hustle and bustle of multiple appointments and the numerous conversations required for the care of their brother or sister with a special need. As a parent, it can be a challenge to establish consistent limits and expectations when the needs, understanding, and potential of your children vary significantly within the same family. At the best of times, siblings have their warm moments interspaced with moments of conflict. The relationship with one’s brother(s) and/or sister(s) is the longest lasting one that most people will have throughout their entire lives. For better or worse, even with Down syndrome, they are brothers and sisters first. For many years, probably at least until grade school, Melanie’s brother and sister just saw her as Melanie and not as a person with a developmental disability. First and foremost, we were a family, albeit with a difference. Families face many challenges that test their character and resilience. Just when you think that you might have things all figured out, life could throw you yet another curve. At age 11, our younger daughter Rachael was a beautiful, slightly anxious and eager to please young girl.

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On the surface of things, she was physically healthy and was an average student. The spring after her 11th birthday, she seemed to be struggling a bit more at school and to be a bit more preoccupied with her worries. This progressed throughout the summer months. She became pickier about her eating and more prone to overdo her exercise. She was a soccer player and an Irish dancer and always worked hard to do her very best. Throughout this period though she seemed to be losing her spark and her energy seemed lower. She was losing weight in a slow yet gradual way and we started fearing for her health. I was working in a pediatric hospital in mental health and had a colleague specializing in adolescent health who agreed to see her on an urgent basis. So many families never get that level of access and often only get to care when the situation becomes even more critical. Upon examination, it was clear to my colleague that Rachael was not well at all. She was suffering from extreme anorexia nervosa and was immediately hospitalized and put on a heart monitor. Ironically, for the second time my career, choices had foreshadowed my family’s path. It is hard to describe the guilt that one feels as a parent when someone else notices something in your child that you should have seen much earlier. Being a professional in the field does not mean that you are going to have all of the answers for the health and wellbeing of any of your children. Although it might provide an advantage in understanding how best to navigate the health care system, it does not guarantee better outcomes. Having your child treated on the same wards that you have worked on as a clinician further increases your sense of guilt, responsibility, and stigma. Although Rachael’s eating disorder was visible as she was so emaciated, her underlying mental illness was not. As her anorexia nervosa was being treated aggressively, her underlying problems with anxiety and depression became more apparent. While she was hospitalized, Rachael began showing signs of having recurring suicidal thoughts. It is hard to understand how much pain an eleven-year-old must be in to want to end her own life. Eating anything became overwhelming to her, resulting in her being fed through a nasogastric tube. Rachael became one of the many listless, vacant-eyed girls that I had seen walking the hospital corridors throughout my years there. It broke my heart to see her in such emotional pain. At her worst, she became selectively mute, refusing to speak in the same way that she refused to ingest food. As a parent/ professional there is this overwhelming sense of helplessness in such circumstances.

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During her lengthy hospitalization, Rachael was assessed physically, psychiatrically, and educationally. Her degree of malnourishment was having an impact on her cognitive functioning. Even taking this into consideration, it became clear that she had an underlying learning disability that had been challenging her ability to keep up in school. In many ways, she had been working hard to fool people for a while. Her heavy familial loading of depression and anxiety on both her mother and father’s sides were identified. Her illness was clearly symptomatic of the fact that both parents and her family as a whole were not well. Physically she was starting to gain ground, which put a spotlight on her significant mental health issues. At one point in her hospitalization, a psychiatrist friend and colleague of mine asked Rachael what he could do to help. Her answer was quite telling. She asked him to help her dad feel less sad. That comment changed everything. Suddenly Rachael’s illness became about family mental illness and how each of us was dealing (or not) with our own mental health. The cost of not addressing our mental health as parents was now being seen in our child. Rachael’s mother had experienced significant mental health issues most of her life and had received support for these on and off for several years. I had thought that I was holding everything together and that everything would work out fine as long as I worked really hard and tried to do all of the right things. I had to remind myself that depression was rampant in my family (grandmother, mother, brother, sister, niece) and that I was not immune to this. Our extended family had lived with this across generations without ever really talking about it. I learned that my daughter’s mental health issues mirrored my own, often co-occurring. I felt that I could keep all of the balls in the air no matter how many extra balls were added to the mix. My youngest child was now telling her doctors that she was not willing or able to go home to the family that existed before her hospitalization. The balls were starting to drop. What the Literature Says The literature on marital distress and parenting of children with special needs is equivocal. Although there is often an assumption that parents of children with special needs are faced with stressors well beyond that of their parent peers and that this should invariably lead to greater marital distress and divorce, research does not always support this. The

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meta-analysis by Risdal and Singer (2004) found a significant but much smaller effect on parents’ marital relationships than would be expected under older assumptions about disability and family. In a large-scale population-based study, Urbano and Hodapp (2007) found significantly lower divorce rates among families of children with Down syndrome (7.6%) and families of children with other birth defects (10.8%) compared with those of children with no identified disability (11.2%). The impact of having a child with a disability on families in general and parents in particular appears to be complex and related to multiple factors such as type and severity of the disability, family size, financial burden, time for care of the child, and the availability of appropriate supports (Namkung, Song, Greenberg, Mailick, & Floyd, 2015; Statistics Canada, 2006). The Participation and Activity Limitation Survey (PALS) by Statistics Canada (2006) clearly showed that as severity of a child`s disability increases, there are clear negative effects on parents’ perceptions of both their own health and life satisfaction. There has also been specific research to document the burden of having a child with a mental illness (Hastrup, Van Den Berg & GyrdHansen, 2014; Angold, Messer, Stangl, Farmer, Costello & Burns, 1998). Among the many factors contributing to parent and family stress in the presence of disability in general, the particular stigma of mental illness can contribute to the shame and silence that these families often live with (Hinshaw, 2005). The lack of resources for effective management of child and youth mental health concerns paired with challenges in navigating the care systems for such issues also contribute significantly to the burden of parents and the stress that they experience (Brown, Green, Desai, Weitzman & Rosenthal, 2014). The association between mental illness (child and/or parent), family functioning and marital distress seems to be even more complicated. It is a bit of a chicken and egg phenomenon. There are clear stressors in raising a child with a mental illness (e.g., stigma, concerns about the future, system navigation and the availability of appropriate resources, safety) that can impact the mental health of a parent. Mental illness also runs in families, which is so apparent in my own history. Parents bring their own challenges to their parenting role and marital relationship, both of which can have a profound effect on their children’s mental health (Van Loon, Van de Ven, Van Doesum, Witteman & Hosman, 2014). The literature on parental depression and child functioning is quite clear in describing how the parent-child relationship is impacted by a parent’s illness (Beardslee, Gladstone & O’Connor, 2011; Beardslee,

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Versage, & Gladstone, 1998). Having a spouse with a mental illness has also been shown to have a significant impact on the sustainability of the marital relationship (Fadden, Bebbington, & Kuipers, 1987). The Personal Story Continues At the end of the day, after 20 years of marriage, we did end up being a statistic. It was not the stress of having a first child with Down syndrome or even the challenges of supporting another child with a severe mental illness that led to our marriage ending. Parenting a child with a special need, or in this case two children, did indeed test our definition of family, life course, and resilience. It also brought us a wealth of experiences, good and bad, that contributed to growth and eventual change. These circumstances forced us to look at our own health and wellbeing and just what each of us needed to do, not just for our children but also for ourselves. Fundamental differences became magnified and dysfunction was no longer a long-term option. We did not agree that separation and divorce was the solution but ended up there nevertheless. Divorce is a reality that can add to the stress in a family but also contribute to a significant decrease in exposure to conflict and dysfunction. There is a large body of literature on the impact of divorce on the health and wellbeing of children (Sandler, Tein, & West, 1994). The situation is no different in families with a child with a developmental and/or mental health issue. Co-parenting still has to be negotiated across households and any residual conflict should remain between the parents and not acted out through the children. In the case of children with special needs, there are additional considerations of negotiating decisions about health care, balancing appointments with care providers, and maintaining consistency in the day to day care of the children involved as it relates to their exceptionality. As such, differences in expectations, level of independence, and approaches to care can become magnified. In our situation, life moved on, albeit in two different households. Major decisions still needed to be made such as Melanie’s educational placements over time. Rachael’s mental health continued to be a focus of much concern and attention with repeated hospitalization required in her later teen years due to increased anxiety, recurring suicidal thoughts, and the onset of self-injurious behaviour (cutting). Co-parenting without conflict was challenged with my entering into a new relationship with two stepdaughters joining the family. Blended families can be a

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source of tension and distress for children, although our experience was just the contrary. The degree of acceptance and the sense of family beyond just biology was a wonderful thing to see. In a family of now five children, it became clear that each one was their own person with their own strengths and weaknesses. No one was a diagnosis and the now four sisters and one brother developed their own relationships with each other. Change was fairly constant with many conversations with all of the children about how things were working for them. For the most part, they were working very well. Perhaps family size was indeed a predictor of wellbeing as some of the literature has suggested (Namkung et. al., 2015). Reflections There are several lessons that the combination of experiences described above have taught me as a parent, a professional, and a person. Perhaps first among these is that we are often much more resilient that we might have imagined before being faced with any real adversity. You never quite know what you are getting into when you become a parent and the changes that this can bring to your life plan as well as your sense of self can be profound. I have learned more from all of my children, those with and without exceptionalities, than I have from any book or article that I have read. The challenges have framed my view of the world, how I see myself, as well as my sense of acceptance, tolerance, and fairness. I have met people and learned about a different kind of strength that I would probably never have learned otherwise. In many ways, both Melanie and Rachael are testaments to resilience. Melanie works in her community and is a self-advocate speaking to others (medical and nursing students) about being a person with Down syndrome. She has had to learn to cope with her parents’ mental illness and to assert herself to make her own needs known and respected. She has become independent and resourceful in her problem solving on a day to day basis. She messes up but learns from her mistakes. She still struggles more than her siblings with her parents’ marital break-up but also realizes that anything else would not have worked. She is still the one who is the most vulnerable to being caught between her parents and their inherent differences. Rachael has learned to live with her anxiety, adapting to tough situations rather than being paralyzed by them. She also works and is

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respected by her peers for how she manages stress in the workplace. She has travelled the world both alone and with friends, which is a marvel for someone who was often house-bound due to anxiety. Like her sister, she has a chronic condition that requires attention. It has the potential to affect her in both positive and negative ways as she progresses on her own life journey. She has developed wonderful support networks within and outside of the family that she turns to when she needs to. Melanie and Rachael’s siblings are an integral part of their support system with that support going in both directions. They are all better able to see and appreciate the differences in others. In many ways, their sense of family, non-traditional as it may be, is probably the most protective factor that has sustained each of them along the way. It is not a surprise that Matthew has chosen social work as a career, as many siblings of people with exceptionalities go into the helping professions. As a school board social worker, he has shown a true gift for working with youth experiencing mental health concerns. The link between career, work life, and family realities seems to have repeated itself across generations. We have dealt with stigma in our family by being open and public about what we have struggled with. This chapter is a good example of that. Given my knowledge of the value of exposure in decreasing stigma, and with the permission of my family, I make a point of mentioning our family history whenever I speak on mental health publicly. I often speak of the ten things that I have learned as a parent/professional raising children with exceptionalities. They are summarized below: — Every family has a story — Family issues combine and compound — Intergenerational stories are important and should be shared — Do not forget about siblings — Family mental health affects the workplace and vice versa — Multiple roles can be complicated — Do not forget about fathers — Meaningfully engaged/supported families have better outcomes — We are usually more resilient than we might imagine — Talking about this stuff can be hard, not talking about it is a lost opportunity to promote change As a family, we have all found meaning in who we are individually and collectively. There is no doubt that we have been faced with stressors and challenges that may not be typical for many families. We are not religious by any stretch of the imagination but we do believe in things

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that probably help to guide us when we stumble or struggle. Perhaps at the core of it is a basic understanding that we can cope with adversity when it arises and that we are never alone in doing so. Different does not have to be bad and it certainly can help you grow as a person and as a family.

Reflection Questions/Discussion 1) Discuss how an attitude oriented toward meaning can help families positively navigate the journey through a child’s exceptionalities. Think of the different types of exceptionalities noted in this chapter and discuss the ways in which each of these could help shape families in a positive manner. 2) What can health professionals do to keep track of, and address, their own self-care needs? 3) Give some examples of self-care activities that parents and siblings could engage in to reduce stress and enhance coping in the face of challenges? 4) What moved you while reading the story? What are you taking with you in terms of understanding and sensitivity toward exceptionalities? 5) What types of social supports are in your home community for families with children who have special mental, developmental, or physical health needs?

Glossary Amniocentesis: is a medical procedure used in prenatal diagnosis of chromosomal abnormalities and fetal infections in which a small amount of amniotic fluid, which contains fetal tissues, is sampled from the amniotic sac surrounding a developing fetus, and the fetal DNA is examined for genetic abnormalities. Anorexia nervosa: is an eating disorder characterized by a low weight, fear of gaining weight, a strong desire to be thin, and food restriction. Choanal Atresia: is a narrowing or blockage of the nasal airway by tissue. It is a congenital condition, meaning it is present at birth.

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Chronic Sorrow: is defined as a normal grief response associated with an ongoing living loss that is permanent, progressive, recurring, and cyclic in nature. Congenital Nystagmus: is a condition present from birth where the eyes move together side to side or up and down as they oscillate (swing like a pendulum). Co-parenting: describes a parenting situation where two parents work together to raise a child even though they are divorced, separated or no longer living together. Down Syndrome: is a genetic disorder caused by the presence of all, or part of a third copy of chromosome 21 contributing to delays in a child’s mental and physical development. Infant Stimulation: is a process of providing supplemental sensory stimulation in any or all of the sensory modalities (visual, auditory, tactile, vestibular, olfactory, gustatory) to an infant as a therapeutic intervention to promote physical and cognitive development. Integrated Preschool: is a setting in which children with disabilities are integrated or included in a classroom with typically developing children. Lived Experience: is a term used to describe the first-hand accounts and impressions of living as a member of a minority or oppressed group. Mainstream Class: is the situation where students with special needs are included in regular classes (with or without supports) with typically developing children. Nasogastric Tube: is a medical process involving the insertion of a plastic tube through the nose, past the throat, and down into the stomach for short- or medium-term nutritional support. Premium Pregnancy: refers to a pregnancy that has special meaning to the parent(s) such as the first child after a miscarriage or the first grandchild. Prenatal Testing: is testing for diseases or conditions in a fetus or embryo before it is born. Resilience: is the ability to recover from setbacks, adapt well to change, and keep going in the face of adversity. Selective Mutism: is a childhood anxiety disorder that is diagnosed when a child consistently does not speak in some situations, but speaks comfortably in other situations. Self-Stigma: is being aware of the stereotypes (unfair beliefs) that describe a stigmatized group that you are a part of and agreeing with them.

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Special Program: is used to describe a class that groups students with exceptional needs (e.g., developmental, cognitive, behavioural) together to meet their educational needs. Stigma: refers to a set of negative and often unfair beliefs that a society or group of people have about something. Subjective Meaning: is the understanding that an individual gives to an event or phenomenon based on their personal opinion and experience rather than on externally quantifiable facts. Triple Prenatal Screen: is a non-invasive procedure done through a blood test to test for three specific markers to estimate what a fetus’ chances are of having an abnormality.

References Acharya, K. (2011). Prenatal Testing for Intellectual Disability: Misperceptions and Reality with Lessons from Down syndrome. Developmental Disability Research Review, 17, 27-31. Angold, A., Messer, S.C., Stangl, D., Farmer, E.M.Z., Costello, E.J., & Burns, B.J. (1998). Perceived parental burden and service use for child and adolescent psychiatric disorders. American Journal of Public Health, 88, 75-80. Beardslee, W.R., Gladstone, T.R., & O’Connor, E.E. (2011). Transmission and prevention of mood disorders among children of affectively ill parents: A review. Journal of the American Academy of Child and Adolescent Psychiatry, 50, 1098-1109. Beardslee, W.R., Versage, E.M., Gladstone, T.R.G. (1998). Children of affectively ill parents: A review of the past 10 years. Journal of the American Academy of Child and Adolescent Psychiatry, 37, 1134–1141. Brown, N.M., Green, J.C., Desai, M.M., Weitzman, C.C., & Rosenthal, M.S. (2014). Need and unmet need for care coordination among children with mental health conditions. Pediatrics, 133, 530-537. Covington, S. & Hammer Burns, L. (2006). Infertility counseling: A comprehensive handbook for clinicians. Cambridge: Cambridge University Press. Fadden, G., Bebbington, P., & Kuipers, L. (1987). Caring and its burdens – A study of the spouses of depressed patients. British Journal of Psychiatry, 151, 660-667. Fidler, D.J., Hodapp, R.M., & Dykens, E.M. (2000). Stress in families of young children with Down syndrome, Williams syndrome and Smith–Magenis syndrome. Early Education and Development, 11, 395-406. Frankl, V.E. (1959). Man’s search for meaning: An introduction to logotherapy. Boston, MA: Beacon. Hastrup, L.H., Van Den Berg, B., & Gyrd-Hansen, D. (2011). Do informal caregivers in mental illness feel more burdened? A comparative study of

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mental versus somatic illnesses. Scandinavian Journal of Public Health, 39, 598-607. Hinshaw, S.P. (2005). The stigmatization of mental illness in children and parents: Developmental issues, family concerns, and research needs. Journal of Child Psychology and Psychiatry, 46, 714-734. Kübler-Ross, E. (1969). On death and dying. New York: The Macmillan Company. Kuhlthau, K. & Perrin, J.M. (2001). Child health status and parental employment. Archives of Pediatric and Adolescent Medicine, 155, 1346-1350. Lopez, V., Clifford, T., Minnes, P., & Ouellette-Kuntz, H. (2008). Parental stress and coping in families of children with and without developmental delays. Journal on Developmental Disabilities, 14, 99-104. Namkung, E.H., Song, J., Greenberg, J.S., Mailick, M.R., & Floyd, F.J. (2015). The relative risk of divorce in parents of children with developmental disabilities: Impacts on lifelong parenting. American Journal of Developmental Disabilities, 120, 514-526. Olshansky, S. (1962). Chronic sorrow, a response to having a mentally defective child. Social Casework, 43, 190-193. Parish, S.L. (2006). Juggling and struggling: A preliminary work-life study of mothers with adolescents who have developmental disabilities. Mental Retardation, 44, 393-404. Porterfield, S.L. (2002). Work choices of mothers in families with children with disabilities. Journal of Marriage and Family, 64, 972-981. Perl Kingsley, E. (1987). Welcome to Holland. Retrieved from http://dsnetworkaz.org/holland/ Risdal, D. & Singer, G.H.S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities, 29, 95-103. Rillotta, F. & Nettelbeck, T. (2007). Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability. Journal of Intellectual and Developmental Disability, 32, 19-27. Sandler, I.N., Tein, J.Y., & West, S.G. (1994). Coping, stress, and the psychological symptoms of children of divorce: a cross-sectional and longitudinal study. Child Development, 65, 1744-1763. Shearn, J. & Todd, S. (2000). Maternal employment and family responsibilities: The perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 13, 109-131. Statistics Canada (2006). Participation and Activity Limitation Survey 2006: Families of Children with Disabilities in Canada. Retrieved from www.statcan.gc.ca/89-628-x628-x2008009-eng.htm Thomas, B. & Dowling, C. (2011). Parenting a child with special needs: Living with and loving a disabled child. London: Souvenir Press. Trute, B., Hiebert-Murphy, D., & Levine, K. (2007). Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy. Journal of Intellectual and Developmental Disabilities, 32, 1-9.

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Urbano, R.C. & Hodapp R.M. (2007). Divorce in families of children with Down syndrome: a population-based study. American Journal of Mental Retardation, 112, 261-274. Van Loon, L.M.A., Van de Ven, M.O.M., Van Doesum, K.T.M., Witteman, C.L.M., & Hosmaan, C.M.H. (2014). The relation between parental mental illness and adolescent mental health: The role of family factors. Journal of Child and Family Studies, 23, 1201-1214.

Chapter 7

Finding Meaning in Waiting: Challenges & Growth for Families on Psychotherapy Waiting Lists Emmalyne Watt & Laura Lynne Armstrong “I guess it was later than ‘normal’ before we decided to seek help for our child. In hindsight, we realize there were signs of difficulties earlier, but began noticing real issues around the age of 10. When we brought these issues to our GP, he assured us that it was just typical pre-teen behaviour. So I guess it wasn’t until around the ages of 12 and 13 that we decided to seek out mental health services. We were met with a profound disappointment in the system. Everywhere had wait-lists. Even small local resources like Catholic Family Services. If you wanted to see a counsellor on adhoc then it was fine, but to find someone to see continuously and develop a relationship with, the waiting list was at least a year. I think with mental health, in particular, it is imperative that you are able to develop consistency and relationship building. Not only that, as parents we were floundering trying to navigate the system. There needs to be someone to provide a pathway for families, because we were just going with anything we could find. We spent a year of paying out of pocket, to recommended services and even they couldn’t provide us with many recommendations on where to go. We were appointed a social worker, who really didn’t provide much support for our family as a whole and continuously just told us we had a difficult case. Eventually we got in to see a child psychiatrist, by this time our child was 15, and this psychiatrist only saw patients up until the age of 16. We could tell this psychiatrist didn’t really want to get too involved with our child due to the age limitation and she had such a long-wait list of other children to see, so we felt like we were being rushed out of her care. So, by this time, we couldn’t even access many of services that existed for children because of our child’s age, and then the next wave of services that exist were for the age bracket of 18 and up. There were geographic barriers too. Even though we are in one of the major centres in Ontario, due to the location of our address, we weren’t able to access certain services. What I think about often in all of this, is the fact that we have jobs with benefits and the financial ability to look for alternative services, and even with this financial upper hand we still weren’t able to find the help we needed. So, what do families do that don’t have this financial ability? Across the board, there is a system-wide failure. There needs to be more programs for families struggling with mental illness and better training for teachers and doctors so that it can be recognized sooner, and overall better support and recognition for people and

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their families with mental illnesses. In some way we feel responsible for not seeing this earlier and for not beginning the process sooner.” – Smith Family, Toronto, Ontario

The mental health needs of Canadian children are severely under met (Canadian Institute of Health Research [CIHR], 2010). More than 1.25 million Canadian children require support for their mental health concerns (Statistics Canada, 2013); many are delayed in receiving treatment due to long wait lists. Long wait lists ultimately result in considerable psychological, developmental, social, and fiscal costs (CIHR, 2010). It is estimated that mental health issues cost the Canadian economy roughly 50 billion dollars a year (Lim, 2008). This number is extremely high, especially when considering that less than one in four Canadian children receive treatment for their mental health needs (Waddell, Hua, Garland, Peters & McEwan, 2007). Even with service access, many of these children had to wait months or more for an initial appointment with a mental health professional (Mental Health at CHEO, 2013). A Canadian study investigating wait times for child and family mental health services found only 8.6% of the agencies surveyed reported no wait times at all (Waddell, McEwan, Hua, & Shepherd, 2002). In addition, only 31.4 % of the agencies surveyed met the “mostly able to” benchmark for the wait time standards set by the Canadian Psychiatric Association (Waddell, et al., 2002). On average, “high priority” children and families wait nine months for mental health services, while those deemed “lower priority” wait up to a year (Schraeder & Reid, 2015). These findings are extremely discouraging, particularly when considering that the number of children requiring mental health services has increased by 45% from 2006-2007 to 2013-2014 (Kowalewski, McLennan, & McGrath, 2011). Another barrier to seeking services that many families face is an inability to navigate the system (Representative for Children and Youth [RCY], 2013). Many families are unsure where to begin, what services are available to them and what programs would best suit their child’s needs (RCY, 2013). Additionally, caregivers and mental health practitioners report that the absence of a “circle of care” and the lack of communication between professionals makes it difficult to establish a consistent treatment plan, with a number of mental health professionals claiming that they are only informed 50% of the time if their client goes to the ER for a mental health crises (RCY, 2013). Families also report that, due to the long wait lists, it is not uncommon that their child agesout of the system before receiving treatment (RCY, 2013).

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Reflection 1. Identify some of the main impediments for families looking to receive support for their child’s mental health needs. 2. Provide some suggestions for overcoming the barriers that many families face when trying to access mental health support services. 3. What initial advice would you give a family in helping them to navigate the mental health support system in their pursuit of appropriate services for their child’s needs? Childhood Mental Illness and Longer Term Impact on the Child & Family: How Waiting Lists Can Exacerbate these Problems “Growing up, I never thought of myself as different, even though I had a diagnosis of Attention Deficit Disorder (ADD) with Oppositional Defiant Disorder (ODD). People told me that I had this ‘learning disability’ but I never saw it that way. I was told that I needed to do this or do that and I never thought there was something that I couldn’t do…if I actually wanted to do it. So the issue wasn’t that I couldn’t do what I was being asked, and I knew that if I wanted to, I could do what I was being asked. The issue was that I just didn’t want to do it. It just wasn’t important to me and I knew this, so I never doubted my own abilities. When you’re younger, you’re put into this machine called the school system and it’s a stupid system because most of the time they only allow for one way of doing things. For example, I had a lot of difficulty with written assignments, but when given the opportunity to present them orally, I always did very well. Maybe it’s different now, I don’t know. I do know that I was smart enough to understand that it wouldn’t always be this way…. that one day I would be able to get out of this system and work within my own constructs. Most kids with ADD are pretty smart and know that their ADD doesn’t define them, which I think is really important. I also think that this has a lot to do with the type of support they receive from teachers and family members. Not just support, but the types of messages they receive surrounding their ADD. I was really lucky in this sense. I had very supportive parents that went above and beyond for me. They never stopped encouraging me or believing in me and I was never made to feel inadequate, even though I gave them A LOT of trouble, including expulsion from two schools. I have friends who had a similar diagnosis as me, and they struggled a lot more than I did, socially, emotionally, etc. One of them actually suffered with a lot of depression as a kid and ended up going down a really dark path in life. That could have been me. The good thing is, as you get older, like the university years, you start to care a bit more because you’re on your own, doing things for yourself, not because someone is telling you to. At least that’s what it was like for me.

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So now that I am an adult, it’s harder to tell that I even have ADD. Sure it still manifests itself in certain situations, but rarely. This is due to the fact that I am more easily motivated to do things, because I am doing things my way and doing what I want do and what is important to me. I am 35 years old and I have my own business and would be considered, by many, to be quite successful. Owning my own business has always been a goal of mine, and something I knew I had to do because I don’t consider myself as employable for someone else, but I do very well as an independent business owner. I believe my ADD will always have a presence in my life. My father, who is now 70, has ADD and you can still see it with him sometimes too. He is also a successful private business owner.” – Jonathan, Montreal, Quebec

Significant levels of stress are associated with childhood mental illness. In fact, according to Waddel et al. (2002), “no other group of disorders has such a profound effect on the development and well-being of children and youth, and on their families and communities” (p. 4). This is understandable, given that mental health issues can affect every aspect of a child’s life, including their family and peer relationships, as well as their social and academic functioning (CIHR, 2010; Waddell, et al., 2002). The earlier the onset of the disorder, the higher the probability it will persist into adulthood, if not appropriately addressed by treatment (Shanahan, Copeland, Costello, & Angold, 2011). The risks of mental illnesses such as, depression and anxiety, following an individual from childhood into adulthood are well documented. Without proper mental health treatment, an individual is twice as likely to have depression in their adolescence if they had it in childhood (Costello & Maughan, 2015). That adolescent then is at twice the risk of experiencing depression in adulthood (Costello & Maughan, 2015). There is a high level of comorbidity associated with youth depression and anxiety; a number of studies cite that early onset depression is predictive of anxiety and in turn early onset anxiety is a predictor of depression (Costello, Mustillo, Keeler, & Angold, 2004; Benjamin, Harrison, Settipani, Brodman, & Kendall, 2013). It has been documented that youth depression and anxiety can be associated with negative developmental outcomes, later affecting adults in the following areas: Health, education and income, social relationships, self-harm and criminal behavior. Furthermore, depression in young people is associated with a number of later life psychosocial issues including: Divorce, relationship violence, and the contracting of sexually transmitted diseases (Copeland, Angold, Shanahan, & Costello, 2010; Keenan-Miller, Hammen, & Brennan, 2007). Ultimately, children who suffer from depression or

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anxiety are more likely to engage in substance abuse, drop out of school, struggle with peer and social relationships, experience suicidal ideation, and exhibit Conduct Disorder, than children who are appropriately treated or do not experience these illnesses (Smith & Carlson, 1997; Keyes, 2006; Angold, & Costello, 1993; Berndt, Koran, Finklestein, Glenberg, Korstein, & Miller, 2002; Chansky & Kendall, 1997; Brent, Edelbrock, Costello, Dulcan, & Conover, 1986). These findings are similar to other issues diagnosed in children. Following mood and anxiety disorders, learning disabilities such as ADD/ADHD are the third most common diagnosed mental health classification for youth (RCY, 2013). Academically, childhood ADD/ADHD is strongly associated a number of learning challenges and academic issues (Costello & Maughan, 2015). Psychosocially, it is not uncommon for children who are affected by ADD/ADHD to experience peer rejection and struggle with forming peer relationships (Costello & Maughan, 2015). The disruptive behaviour frequently associated with childhood ADD/ADHD, often continues into adolescence, with many ADD/ ADHD youth exhibiting risky behavious such as driving violations and substance abuse disorders (Biederman et al., 2012; Costello & Maughan, 2015). ADD/ADHD rarely appears on its own and is associated with a number of other mental health issues including, depression, anxiety, suicidality and other mental health issues such as ODD and Conduct Disorder ([CD]; Biederman et al., 2012; Hinshaw et al., 2012). Children who develop ODD and CD are at high risk of developing Antisocial Personality Disorder in adulthood (Costello & Maughan, 2015). Overall, whether it is an internalizing or externalizing mental illness, approximately 50% of untreated childhood disorders persist into adulthood (Horstra, Van der Ende, & Verhulst, 2000). Another factor that severely affects children suffering from mental illness is the negative stigma surrounding mental disorders. Stigma attached to mental illness can result in serious social, psychological, and even economic burdens (Mukolo, Heflinger, & Wallston, 2010). Stigma also inhibits help-seeking behaviour and receptivity to mental health knowledge (Armstrong & Young, 2015). As many as 70% of adults living with mental health issues said they identified having symptoms before the age of 18 but avoided seeking help due to the negative stigma surrounding mental illness (Mental Health Commission of Canada, 2012). The majority of research looking at the effects of mental health stereotyping tends to focus on adults, but more recently, some studies have begun to close this gap by focusing on the stigmaexhibited by

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adolescents and children towards their peers with mental illness (Mukolo et al., 2010). Findings from these studies demonstrate that children who struggle with emotional and behavioural illnesses are more likely to be rejected by peers due to stigma, especially for children suffering with depression (e.g., Mukolo et al., 2010). The effects of stigma can be profound, and contribute to low self-esteem, isolation, helplessness, and high school drop-out rates (Mukolo, et al., 2010; Walker, Coleman, Lee, Squire, & Friesen, 2008). Since many children suffering from mental illness are unable to access appropriate mental health services, family members often become a significant source of support in dealing with the mental health issues (Leith & Stein, 2012; Lukens, Thorning, & Lohrer, 2004). The stress surrounding childhood mental illness is intensified by the perceived and assumed sense of responsibility adopted by family members in providing instrumental and emotional support for their loved ones (Hatfield, 1994). Therefore, families who care for loved ones struggling with mental health issues are also affected, with some experiencing feelings of loss, grief, self-blame and fear of social judgment, and stigmatization (Rose, Mallinson, & Gerson, 2006; Dyck, Short, & Vitaliano, 1999; de Silva & de Silva, 2001). Family well-being, personal sense of meaning, and functioning are also significantly effected by child mental illness and treatment wait times (Schraeder & Reid, 2015; Leavey, 2005). With appropriate, timely, evidence-based treatment, children and families can be resilient and the problems described here may be prevented or minimized (Westin, Barksdale, & Stephan, 2014). One of the greatest barriers to service utilization is the length of mental health wait lists (Barwick et al., 2013). Although great strides have been made in evidence-based practice and quality assurance, these advances are limited if treatment cannot be accessed when needed the most (Weisz & Kazdin, 2010). Prolonged wait times have a profound impact on a child and family’s engagement in treatment (Westin, et al., 2014). In fact, with long wait lists, 48% to 62% of families fail to attend a first therapy session (Harrison, et al., 2004), even though longer wait times can mean a worsening of the problems (Harrison, et al., 2004). Mental health concerns may be exacerbated, a family’s distress may be prolonged, and occasionally death or divorce occurs in times of crisis (Barwick, et al., 2013). Moreover, if a family does utilize evidence-based psychotherapy services, children and families indicate lower levels of satisfaction with the services provided relative to the length of time that they spent on a waiting list (Tahhan, et al., 2010).

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Reflection Questions 1. How are long mental health service wait times impacting the mental health of children? 2. Consider the above statement provided by Jonathan about the school system as rigid and inflexible for children with mental health issues. Suggest a few ways that accommodations could be made for these students? Long Waiting Lists: Barriers to Service Access & Prolonged Effects of Child Mental Illness on Siblings “I never really realized how big of an impact my brother’s mental health illness had on my family. Thinking back on it, now I do, but as a kid you don’t really understand these things. I mean to a certain extent, I did understand. I knew it caused a lot of problems for my family, but I didn’t appreciate the magnitude of the stress it placed on us and the well-being of our family. I am the middle child, and in a way I felt that I needed to be the peacekeeper, or at least not make any extra work for my parents. I never went to them for help with my homework or for trouble I was having at school. I learned to be the silent child and help out when I could. My parents tell me now how sorry they feel for my experiences. They remember constantly sending me away, to go play outside or in my room when I came to them with things, because they were busy with my brother and I was an easy, obeying kid. I definitely remember feeling bad for my mom, I could tell she was stressed and overworked. She tried really hard with my brother, and he had problems right form the beginning. I think his ADD diagnoses came first and then later the diagnoses of CD and ODD. As far back as my earliest memories, I remember there being issues with him. No one, not parents, family members, or teachers, ever tried to explain to me or talk to me about his issues. All I knew was that he was a problem and I never understood why, which definitely caused me to resent him. As he got older, it got worse. I remember so clearly the day the cops showed up at our house with him. He had been caught shooting at people with his BB gun at a local basketball court. I think he was 14? That was the last straw and he was shipped off to boarding school. I was two years younger and joined him there at that school for grade 9, not because of bad behaviour, but because it was a good school. He was in grade 11 and I remember it being really hard on me to be at the same school. Of all the things that resulted from his mental illness, probably his reputation with schoolmates and peers was what affected me the most. At this school, for example, he had already made such a reputation for himself, that I wasn’t even given a chance to find my own place at that school or even form my own identity. He was such a troublemaker, that I was always known as “his brother.” Teachers even treated

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me differently, initially assuming I would be just like him. He was expelled by the end of my first year at that school. I was humiliated, but also relieved that I could finish up my high school experience without him being a part of it. I think that, because I grew up in his shadow and because of the rejection I felt from my parents, I definitely have some selfesteem and anger issues today. Also, of all the help that was given to my brother, no one ever asked me how I was doing, or how all this might be affecting me. There was never any family therapy or anything. Just individual help for my brother.” – Christopher, Ottawa, Ontario

The relationships formed between brothers and sisters can be some of the closest, most intimate relationships that one can experience. These relationships can be sustained throughout one’s life and are unique due to their shared history. There has been an extensive amount of research centering on the effects of growing up with siblings who struggle with mental illness. Parents and caregivers often expend the majority of their time and energy on a child with mental illness. Consequently, siblings end up feeling invisible, ignored, and sometimes neglected (Griffiths & Sin, 2013; Leith & Stein, 2012; Sin, Moone, Harris, Scully, & Wellman, 2012). “I feel invisible because so much of my mother’s time and energy was focused on my brother” (Lukens, et al., 2004, p, 494). Experiences, such as the one described above, can lead to resentment toward the sibling suffering from mentally illness (Griffiths & Sin, 2013; Sin, et al., 2012). These feelings potentially result in guilt, as the siblings may want to be empathic, but find it difficult due to their perception that their own needs are being disregarded (Sin et al., 2012; Leith & Stein, 2012). Siblings may not only feel that their needs are being overlooked, but may consider that their role is to function as the “perfect” child, and consequently are unable to express their own personal concerns and struggles (Zeilinger, 2015). This may be a result of a perceived neccessity to compensate for the familial stress being experienced, associated with the mental illness (Zeilinger, 2015). Due to the pressure of maintaining this façade, their inability to express their true feelings can cause these siblings to live a “double-life,” affecting their capacity to connect with friends and other potential sources of support (National Alliance on Mental Illness [NAMI], 2013). Developmentally, this can lead to issues with identity as these children mature into adolescents (Lukens, et al., 2004; NAMI, 2013). One study, examining how a sibling’s self and family were altered by childhood mental illness, reported that the participant’s identity was severely affected on a regular basis (Lukens, et al.,

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2004). Participants remarked that growing up with a brother or sister struggling with mental illness had a profound influence on their development and personality (Lukens, et al., 2004). One participant remarked, “The illness affected the direction of my entire life” (Lukens, et al., 2004, p. 495). Areas of life such as career choice, romantic relationships, and plans for the future were all, in some way, changed by growing up with a sibling afflicted with a mental illness (Lukens, et al., 2004). The impact of social stigma associated with mental illness and fear of judgment from peers, potentially produces serious effects on these siblings’ ability to maintain a healthy social life (Sin et al., 2012). Siblings of children with mental illness report stigma surrounding mental health issues as one of the greatest factors affecting their ability to maintain a normal social life (Sin et al., 2012; Lukens, et al., 2004). Siblings have reported feelings of embarrassment, the inability to engage in healthy discussion regarding their sibling and their discomfort in sharing thoughts and feelings with friends about their brother or sister’s mental illness (Sin et al., 2012; Lukens, et al., 2004). Some have reported fear of, or avoiding inviting friends over, in order to keep the mental illness hidden (Sin et al., 2012), resulting in self-isolation (NAMI, 2013) As sibling relationships have the potential to be such close relationships, having a brother or sister diagnosed with a mental illness can generate feelings of grief, loss, and even despair (Sin et al., 2012; Lukens, et al., 2004). This experience is sometimes due to the siblings’ coping mechanism to distance themselves from the mental illness, ultimately distancing themselves from the afflicted family member (Sin et al., 2012). These feelings of loss may be a consequence of the changes taking place in the brother or sister, as a result of the mental illness. A 15-year old reflects back on what it was like when her brother, who she indicated was her best friend, was diagnosed with psychosis, “He’s just become a completely different person in the last two years…Now he’s just tired, lethargic, lacks ambition, has no drive, no direction. It’s like there’s nothing there, like his personality has been erased” (Sin et al., 2012, p. 56). This notion of personal loss, cited by siblings, is the result of “losing” their brother or sister, in the present, as well as in the sense of “what could have been” (Lukens, et al., 2004; Leith & Stein, 2012; Sin et al., 2012). Feelings of mourning can also arise from “losing” the image of what their family used to be. This can include a loss of sense of family normalcy and also, at times, financial resources (Leith & Stein, 2012, Sin, et al., 2012). Loss may also be felt from the siblings’ inability to form social relationships. For example, the emotional burdens and

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additional time commitments of caregiving duties also impacts the siblings’ opportunities to invest in their own social life (Leith & Stein, 2012; Sin, et al., 2012). Without the proper resources and support, siblings may ultimately fall victim to experiencing mental illness themselves (Griffiths & Sin, 2013; Sin et al., 2012) or engage in dangerous coping activities, such as substance abuse (NAMI, 2013). Therefore, barriers to mental health service access for the child and family, including long wait list times, can have a tremendous impact not only on a child suffering from mental illness, but also the siblings of the suffering child. Furthermore, services that neglect the needs of the siblings of sufferers of mental illness may miss addressing critical barriers to family healing. Reflection Questions 1. What supports could be established to help siblings of children with mental health issues? Do you know of any supports that exist today? Provide examples. 2. As described in the vignette above, no one ever tried to talk to Christopher about his brother’s mental illness. Imagine you are a family therapist and you have a two-child family, both children under the age of 10, who come to see you for services. How would you define what mental health issues are to the family? What would be some key aspects to include and why? Provide examples. Long Wait Lists: Barriers to Service Access & Prolonged Effects of Child Mental Illness on Parents & Caregivers Many of the experiences described for siblings are similar to those felt by parents and caregivers of children with mental illness. The strain placed on the family by the presence of a mental illness may be intensified for parents and caregivers who assume the majority of the care responsibilities (Marsh & Dickens, 1997). Having a child who suffers from mental illness commonly leads to long-term effects on the parents’ or caregivers’ physical and psychological well-being (Ferriter & Huband, 2003). The long-term negative effects for caregivers associated with mental illness in children results in both physical and mental exhaustion (Mohr & Regan-Kubinski, 2001). Caregivers of individuals with mental

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illness often experience a significant amount of stress associated with the burden of caring for their loved ones (Rose, Mallinson & Gerson, 2006). Distress is worsened by worry concerning the illness, placing stress on the relationships within the family (Rose et al., 2006) In addition, strains and tensions that existed prior to the onset of the mental illness are intensified by its manifestation (Delaney & Engels-Scianna, 1996). The additional stress associated with the emotional, financial and psychological burdens derived from the mental illness lead to a variety of negative outcomes, including, anxiety and depression. One study stated that 60% of participants who cared for children with a mental illness reported being anxious and depressed (de Silva & de Silva, 2001). In addition to depression and anxiety, parents report feeling overwhelmed, resentful, and helpless (Wade, 2006; Rose et al., 2006). “Really I have accepted it because it’s a task I have already been given, but it’s a big task, it’s a very big task to care for a child with a mental disability” (Ambikile & Outwater, 2012, p. 5). Negative stigma surrounding mental illness contributes significantly to caregivers’ inability to seek social support and resultant feelings of isolation (Wade, 2006). In fact, the judgment and blame experienced by caregivers from mental health practitioners throughout the 1900’s is a large contributor to the stigma associated with mental health issues today (Lefley, 1992). Until the late 1900’s, the position held by many therapists was that a child’s mental illness stemmed from poor parenting (Goldstein, 1981) and parents were viewed as contributors. To allow the therapist to fully intervene and provide the appropriate care needed, the protocol was to exclude parents from the therapeutic process (Goldstein, 1981). Although much improvement has been made over the past couple of decades, parents still report feeling blamed by mental health practitioners (Corrigan & Miller, 2004). Today, there remains a societal predisposition to categorize mental illness as something weak or dangerous (Rose, et al., 2006), with many caregivers continuing to perceive that they are being judged and blamed for their child’s condition (Hinshaw, 2005; Ferriter & Huband, 2003; Geraghty, McCann, King, & Eichman, 2011; Wade, 2006). Perception of blame from family and friends, coupled with self-blame can cause parents to feel guilty surrounding their child’s mental illness (Geraghty et al., 2011; Ferriter & Huband, 2003). The stigma surrounding a child’s mental illness can impact parenting and ultimately the development of the child (Hinshaw, 2005). For example, parents may avoid social domains such as neighbourhood functions, churches, community centres, even family and friends due to

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the perception of judgment (Hinshaw, 2005). The stigma experienced and personal time displaced by caring for a mentally ill child can affect a caregiver’s ability to seek the social support they need. Families convey uncertainty as to how to discuss their child’s mental illness with other family members and friends (Geraghty, 2011; Ferriter & Huband, 2003), leaving many parents feeling isolated and alone (Wade, 2006). Selfblame is also common with parents frequently questioning if they are in some way responsible for the onset of the mental illness. (Geraghty, 2011; Ferriter & Huband, 2003). As one parent remarked “We did the same with all of them…same amount of presents…at Christmas, you know? We stopped her going out on a Saturday…perhaps that had something to do with it…I thought I’d done pretty much the same with all of them, why aren’t they all ill? It must have been some way in which we treated her” (Ferriter & Huband, 2003, pp. 555-6). In fact, Ferriter & Huband (2003) found that over 50% of the sample reported blaming themselves for their child’s mental illness. Comparable to experiences reported by siblings, caregivers also conveyed feelings of loss. These feelings of loss are accompanied by sadness and grief, but, unlike the sympathy associated with losing a child to death, “losing” a child to mental illness does not warrant the same level of support that is generally received from friends, family and community (Howard, 1998). Feelings of loss may manifest themselves in a variety of ways. Parents relate mourning the loss of dreams for their child’s future and their own (Johannson, Anderzen-Carlsson, Ahlin, Andershed, & Skondal, 2012), as well as loss for their child’s capacity to lead a normal life (Ryan, 1993). Caregivers also report experiencing personal feelings of loss, such as loss of social life and previous relationships (Ambikile & Outwater, 2012; Stein, Aquirre, & Hunt 2013), loss of freedom (Ryan, 1993) and loss of former self (Stein et al., 2013). Such issues are compounded by barriers to mental health services, such as long waiting lists. With cost-efficient, evidence-based, timely services—or helpful information provided to families while on waiting lists, concerns can be addressed in an accessible manner and the tremendous difficulties that parents often experience can be prevented or minimized (Barwick, et al., 2013). Reflection 1. What are some of the biggest contributors to mental health stigma today? How may the media play a role in this?

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2. Provide an example of mental health stigma that you have witnessed in your own society. 3. How could societal stigma surrounding mental health issues be reduced? Provide three suggestions. Potential Avenues for Intervention Stress & Resilience Given the findings surrounding childhood mental illness and the effects on the family unit, it is evident that lack of mental health resources and long wait times, can be particularly detrimental for child and family well-being. The stress associated with childhood mental illness is, in itself, a pervasive and significant risk factor (Compas, Connor-Smith, Saltzman, Thomsen, & Wadsworth, 2001). Children who experience prolonged stress in the early years of life are at risk of experiencing a variety of long-term mental health issues (Stanley & Siever, 2010). By contrast, the ability to properly manage and cope with stress can be an invaluable skill for future functioning and healthy development. Protective factors are measurable characteristics that predict positive outcomes in the context of risk (Masten & Reed, 2002). The presence of protective factors can help to protect children and families from the negative effects of risk factors; this is known as resilience (Barankin & Khanlou, 2009). As such, protective factors can exert their influence on a particular negative outcome through their inverse relationship with risk factors for the outcome or through their direct inverse relationship with the outcome. Resilience is a term often discussed when considering how well one is able to change and adapt to stressful situations (Oliver, Collin, Burns, & Nicholas, 2006). “Resilience refers to the process during which a person achieves positive outcomes despite negative experiences by coping successfully and avoiding the negative development that often follows traumatic experiences” (Askeland, Hysing, Aaro, Tell, & Siversten, 2015, p. 49). Individuals who possess skills of resiliency are generally more emotionally stable, are better at managing their automatic arousal and are more likely to use social and environmental sources of support (Kowalewski, et al., 2001; Compas, et al., 2001). Resilience is positively correlated with higher levels of life satisfaction and negatively correlated with adverse indicators of mental health, such as depression and anxiety (Roesch, et al., 2005). A study investigating the affects of

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resiliency in youth, found that higher scores of resiliency were correlated with fewer symptoms and mental health problems including: ADHD, obsessive-compulsive disorder, and depression (Askeland, et al., 2015). What can be done to promote resilience in families affected by child mental illness in a system where long waiting lists are prevalent? Resilience & Meaning A sense of meaning is an important protective factor for well-being (Armstrong & Manion, 2013; Busseri, Rose-Krasnor, Willoughby & Chalmers, 2006; CIHR, 2010; Kumpfer, 2002). More specifically, a sense of meaning is positively correlated with good mental health and developmental outcomes such as: Reduction of risky behaviours, increased self-esteem, higher academic functioning, and overall positive psychological functioning (Armstrong & Manion, 2013; Busseri, RoseKrasnor, Willoughby, & Chalmers, 2006; Kumpfer, 2002). The experience of meaning or purpose also decreases suicidal ideation (Armstrong & Manion, 2013; Frankl, 1986). In fact, the search for meaning is thought to be the primary motivational drive for humans (Frankl, 1986). Key pathways to meaning include (Frankl, 1986): 1) Doing a deed for others or creating a work (e.g., creating something for others; personally valued work), 2) By experiencing something (e.g., engagement in valued activities; experiencing nature; participating in shared family activities around the city), 3) Encountering someone (secure relationships with others), and 4) Choosing our attitudes (to derive meaning even from suffering and darker experiences). The most primary and powerful of these meaning pathways, as well as the most sustainable, is secure attachment with others. Constructs representing “meaning” for children are: 1) personal power or agency over thoughts, feelings, and behaviour; 2) self-esteem or personal sense of worth; 3) openness to experiences (learning, connection with others, and feelings), and; 4) hope for the future (Erikson, 1964; Markstrom & Kalmanir, 2001; Search Institute, 2013; VanderVen, 2008). Personal power or agency is the sense that a child has some influence over things that happen in life, that they have instrumentality and autonomy (Erikson, 1977; VanderVen, 2008). When a child has autonomy, they have a sense of purpose that governs their choices and actions (VanderVen, 2008). Personal power or agency means that children believe that they have the ability to solve problems, make choices, and have control over their thoughts and actions to impact their own

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happiness or well-being (Australian Children’s Education & Care Quality Authority, 2015). More specifically, in meaning-centred terms, agency would be the belief that a person can choose his or her attitude under any circumstance (Frankl, 1986). Agency also involves the belief that one can choose behaviours that orient oneself toward meaningful pursuits or a connection with someone or something. Such attitudinal or behavioural changes enhance mood, reduce anger, fear, or sadness, and are foundational for resilience, as Frankl noted in his work with suicidal youth. In fact, regular engagement in personally meaningful extracurricular activities is associated with lower risk of suicidal ideation in young people at risk (Armstrong & Manion, 2013). Complementing the pathways to meaning whereby creative pursuits, connectedness with others, and important work create meaning (Marshall & Marshall, 2012; Armstrong & Manion, 2015; Armstrong & Manion, 2006), self-reported personal power in childhood is derived from play and creative activities and secure connectedness with others, particularly within the family (VanderVen, 2008). Self-esteem for children involves liking and feeling proud of oneself, feeling valued by others, and seeing oneself as adequate and worthy of happiness (Branden, 1994; Search Institute, 2013). A feeling of purpose is intrinsic to self-esteem (Borba, Borba, & Reasoner, 1999). In the meaning-maintenance model, self-esteem is part of meaning as it is critical to the perception of meaning (Van Tongeren & Green, 2010). Specifically, for people to perceive life as meaningful or to see meaning in the moment, they have to perceive themselves as persons of worth (Van Tongeren & Green, 2010). Through secure attachment with parents, children develop a working model of themselves as worthy of love (Cassidy, 2001; Gomez & McLaren, 2007; Laible, Carlo, & Roesch, 2004; Muris, Mesters, & van den Berg, 2003; Parker & Benson, 2004). Having a child with mental illness can disrupt family relationships; thus, have a negative impact on family members’ self-esteem (Lee & Hankin, 2009). By contrast, strategies and activities to enhance meaningful connection have a positive relationship with self-esteem (Lee & Hankin, 2009). High self-esteem is also related to openness to experience (Evans, 2005). Openness to experiences is part of a sense of purpose and meaning in childhood (Patterson, 1977). It involves an attitude of curiosity and imagination, a desire to learn new things, attentiveness to inner and others’ feelings, intellectual curiosity, and openness to discovering who we and others are, enhancing social competence and relatedness (Costa &

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McCrae, 1992; Stoddard, Henly, Sieving, & Bolland, 2011). Related to the meaning pathways, openness to experiences includes creating or giving to others and recognizing the fun or joy in everyday experiences (Frankl, 1984; Search Institute, 2013). Openness allows one to shape one’s life in a meaningful manner and also to perceive meaning: The perception of meaning in emotional connection with others, creative pursuits and new attitudes or ideas, and find joy in shared experiences (e.g., Shantall, 1989). Openness to experiences also gives hope for the future (Snyder, Cheavens, & Michael, 2000). Hope for the future is central to a childhood sense of purpose and meaning in life as well as personal responsibility (Miller & Powers, 1988; Stoddard et al., 2011). Hope involves the anticipation of a future that is good, the ability to cope, and a sense of the possibilities (Stoddard et al., 2011). Synthesizing the literature, families with hope for the future look beyond the present and believe that they have much to look forward to in life, believe that they have the agency and competence to conceptualize and reach future goals or other things that are important to them, are optimistic that bad times will improve and that life will be good, and that their life matters (Frankl, 1984; McDermott & Snyder, 2000; Search Institute, 2013; Spirito, Williams, Stark, & Hart, 1988). In meaning theory, hope is intrinsic to the experience of meaning. Specifically, a loss of hope is a loss of meaning, while hope is optimism in the face of difficulty—the ability to take responsible action and make the best of any given situation (Frankl, 1984). Hope is also central to resilience as it fosters resilience even in the midst of difficulty. Specifically, the freedom to respond to any situation, to choose and to change our attitude and actions, allows for hope. Hope is a perceived reality: It is the meaning for which to live. These factors that are indicators of meaning—a sense of hope, openness to experience, self-esteem, and agency—are built within a family system through the pathways to meaning. A resilience-based educational or online approach that addresses the pathways to meaning may be a helpful resource for children and families struggling on mental health wait lists. Enhancing meaning through building secure family attachment, meaningful engagement, contribution beyond the family, and attitudinal change may reduce the severity of symptoms and, thus, ultimately shorten wait lists. An existing program—D.R.E.A.M. (Developing Resilience through Emotions, Attitudes, and Meaning)— uses educational songs and hands-on activities to teach meaning-based skills for resilience in school-aged children. This program has demonstrated promising findings in enhancing hope,

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self-esteem, openness to experience, and agency (Armstrong, in press). Perhaps a program such as this, as an online resource, might also be helpful for children and their families on mental health waiting lists, with additional components directed toward the whole family system. Proposed Approach “I was the first to notice our child had an issue. I remember going to her school, opening her desk and seeing all her assignments crumpled up into little balls. Maybe there had been some signs before this, but this was the turning point for me. I was so disappointed in her school. Teachers just don’t recognize the signs of mental illness, or they do and don’t alert the parents to it. From most of the other parents I have spoken to, they were like me in that they were the first to notice a problem and to bring it to attention. It’s really hard because I know there is a lack of resources for schools. I think at my kids’ school, very few students get to see the school psychologist each year. So, even in the schools there are waiting lists! For those students that don’t get seen, they just slip through the cracks. There needs to be more programs geared towards supporting and educating parents, family programs. We did one called Triple P. It was an 8-week long parenting course and you met once a week. We learned some good skills through that and also heard stories from other parents, which was really helpful because we knew we weren’t alone. KNARK was another good program that utilized a family approach. The government needs to invest in more services geared towards supporting the family, or providing tools that can be used at home. Many of these problems happen at 9pm on a Sunday night and when your child tends to flight or fight, you need to know how to handle those situations or they are walking out the door into the night.” – Smith Family Continued

The Mental Health Commission of Canada recommends that the aim of knowledge mobilization be prevention or mental health promotion programs, targeted at resilience and optimizing child and youth mental health development (Mental Health Commission of Canada, 2012). According to Mrazek & Haggerty (1994), regardless of the type of prevention program, whether family programs, at-risk child programs, or universal programs, all could be strengthened through a committed effort to promote resilience (Mrazek & Haggerty, 1994). It is also recommended that resilience-based programs be delivered in the manner in which young people want to receive mental health information: Online, through peers, experts, hands-on activities, and via multimedia (Armstrong & Young, 2015). Despite these recommendations and an increasing amount of literature focused on the importance of building resilience, very few of these types of programs exist (Lean & Colucci,

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2013). The mental health promotion programs that do currently exist, narrowly focus on singular disorders. In addition, many of them lack effective program implementation, a critical factor in determining the success of a program (Kumpfer, 2002; Lean & Colucci, 2013). An unnecessary amount of Canadian children continue to struggle with mental illness into adulthood (Kessler, et al., 2005), even though research continues to demonstrate that childhood mental illness and the issues associated with it, could be significantly reduced through effective mental health promotion approaches (Compas, et al., 2001). To date, no mental health promotion approaches exist specifically for children and their families on long wait lists. This often results in a worsening of symptoms, a requirement for more in-depth treatment, and consequently, longer wait periods for others on the mental health service lists. Ideally, a meaning-based mental health education program for children and families on wait lists would provide educational tools that would reduce symptoms, increase child and family resilience, decrease service time needed, and allow families to more effectively navigate the mental health system. Further research and development is needed in this area in order to address the significant family concerns associated with mental health wait lists. Glossary Family System Theory is the idea that the family is an emotional, interdependent unit and each individual cannot be understood in isolation form the other. Hope is the anticipation of a future that is good, the ability to cope, and a sense of the possibilities. Openness to experience involves an attitude of curiosity and imagination, a desire to learn new things, attentiveness to one’s own and other’s feelings, intellectual curiosity, and openness to discovering who we and others are. Personal power or agency means that a person believes that they have the ability to solve problems, make choices, and have control over their thoughts and actions to impact their own happiness or wellbeing. Protective factors are measurable characteristics that predict positive outcomes in the context of risk.

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Self-esteem involves liking and feeling proud of oneself, feeling valued by others, and seeing oneself as adequate and worthy of happiness. Stigma is a mark of shame or disgrace associated with a certain label (e.g., a mental illness). People who experience stigma may fear judgement or discrimination from others. References Ambikile, S.J. & Outwater, A. (2012). Challenges of caring for children with mental disorders: Experiences and views of caregivers attending the outpatient clinic at Muhimbili national hospital, Dar es Salaam – Tanzania. Child and Adolescent Psychiatry and Mental Health, 6, 1-11. Retrieved from: http://www.biomedcentral.com/content/pdf/1753-2000-6-16.pdf Angold, A., & Costello, E.J. (1993). Depressive comorbidity in children and adolescents: Empirical, theoretical, and methodological issues. American Journal of Psychiatry, 150, 1779-1791. doi: 10.1176/ajp.150.12.1779 Armstrong, L.L. & Young, K. (2015). Mind the gap: Person-Centred Delivery of Mental Health Information to Post-Secondary Students. Psychosocial Intervention, 24, 83-87. doi: 10.1016/j.psi.2015.05.002 Armstrong, L.L., & Manion, G.I. (2013). Meaningful youth engagement as a protective factor for youth suicidal ideation. Journal of Research on Adolescence, 25, 20-27. Retrieved from http://onlinelibrary.wiley.com/store/10. 1111/jora.12098/asset/jora12098.pdf?v=1&t=ig9ra220&s=37c7fd35ada329f72 e7312e71c934ae57e7d37cc Armstrong, L.L. & Manion, I.G. (2006). Suicidal ideation in young males living in rural communities: Living distance from school as a risk factor, youth engagement as a protective factor. Vulnerable Children and Youth Studies, 1, 102-113. Askeland, G.K., Hysing, M., Aaro, E.L., Tell, S.G., & Siversten, B. (2015). Journal of Adolescence, 44, 48-56. doi: 10.1016/j.adolescence.2015.07.001 Australian Children’s Education & Care Quality Authority (2015). Guide to the Education and Care Services National Law and the Education and Care Services National Regulations. Sydney: Author. Barankin, T., & Khanlou, N. (2007). Growing up resilient: Ways to build resilience in children and youth. Toronto: CAMH (Centre for Addiction and Mental Health). Barwick, M., Uranjnik, D.J., Sumner, L., Cohen, S., Reid, G.J., Engel, K., et al. (2013). Profiles and service utilization for children accessing a mental health walk-in clinic versus usual care. Journal of Evidenced-Based Social Work, 10, 338-352. Benjamin, C.L., Harrison, J.P., Settipani, C.A., Brodman, D.M., & Kendall, P.C. (2013). Anxiety and related outcomes in young adults 7 to 19 years after receiving treatment for child anxiety. Journal of Consulting and Clinical Psychology, 81, 865-876. doi: 10.1037/a0033048

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Community Mental Health. Retrieved from http://cjcmh.com/toc/cjcmh/ 24/2 Leith, E.J. & Stein, H.C. (2012). The role of personal loss in the caregiving experience of well siblings of adults with serious mental illness. Journal of Clinical Psychology, 68, 1075-1088. doi: 10.1002/jclp.21881 Lefley, H.P. (1992). The stigmatized family. In P.J. Fink & A. Tasman (Eds.), Stigma and mental illness (pp. 127-138). Washington DC: American Psychiatric Press. Lim, K.L., Jacobs, P., Ohinmaa, A., Schopflocher, D., & Dewa, C.S. (2008). A New Population-Based Measure of the Economic Burden of Mental Illness in Canada. Chronic Diseases in Canada, 28(3), 92-98. Lukas, E. (1986). Guilt and the question of meaning. Meaning in suffering. Berkeley, CA: Institute of Logotherapy Press. Lukens, P.E., Thorning, H., & Lohrer, S. (2004). Sibling perspectives on sever mental illness: Reflections on self and family. American Journal of Orthepsychiatry, 74, 489-501. doi: 10.1037/0002-9432.74.4.489 Markstrom, C.A., & Kalmanir, H.M. (2001). Linkages between the psychosocial stages of identity and intimacy and the ego strengths of fidelity and love. Identity: An International Journal of Theory and Research, 1, 179196. Marsh, D.T., & Dickens, R.M. (1997). Troubled journey: Coming to terms with the mental illness of a sibling or parent. New York, NY: Penguin. Marshall, M. & Marshall, E. (2012). Logotherapy revisited: Review of the tenets of Viktor E. Frankl’s Logotherapy. Global: CreateSpace Independent Publishing Platform. Masten, A.S. and Reed, M.G. (2002). Resilience in Development. In C.R. Snyder and S.J. Lopez (Eds.), The Handbook of Positive Psychology. New York: Oxford University Press. McDermott, D., & Snyder, C. (2000). The great big book of hope: Help your children achieve their dreams. California: New Harbinger Publications. Mental Health at C.H.E.O. (2013). What parents can do while waiting for mental health services. Retrieved from http://www.cheo.on.ca/uploads/Waiting% 20for%20MH%20services.pdf. Mental Health Commission of Canada (2012). Changing directions, changing lives: The mental health strategy for Canada. Author: Ottawa. Miller, J.F. & Powers, M.J. (1988). Development of an instrument to measure hope. Nursing Research, 37, 6-10. Muris, P., Meesters, C., & van den Berg, S. (2003). Internalizing and externalizing problems as correlates of self-reported attachment style and perceived parental rearing in normal adolescents. Journal of Child and Family Studies, 12, 171-183. doi: 1062-1024/03/0600-0171/0 Mrazek, P.J., & Haggerty, R.J. (Eds.). (1994). Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research. National Academies Press. Mohr, W.K. & Regan-Kubinski, M.J. (2001). Living in the fallout: Parents’ experiences when their child becomes mentally ill. Archives of Psychiatric Nursing, 15, 69-77. doi: 10.1053/apnu.2001.22406

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Mukolo, A., Heflinger, A.C., & Wallston, A.K. (2010). The stigma of childhood mental disorders: A conceptual framework. Journal of the American Academy of Child and Adolescent Psychiatry, 49, 92-198. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904965/ National Alliance on Mental Illness (2013). Impact of mental illness on well siblings: A sea of confusion. The Alliance on Mental Illness, NAMI Chicago. Retrieved from http://www.namigc.org/documents/ImpactofMIonsiblings. pdf Oliver, G.K., Collin, P., Burns, J., & Nicholas, J. (2006). Building resilience in young people through meaningful participation. Australian e-Journal for the Advancement of Mental Health, 5, 1-7. doi: 10.5172/jamh.5.1.34 Parker, J.S. & Benson, M.J. (2004). Parent-adolescent relations and adolescent functioning: Self-esteem, substance abuse, and delinquency. Adolescence, 39, 519-530. Patterson, C.H. (1977). Foundations for a theory of instruction and educational psychology. New York: Harper & Row. Representative for Children and Youth (2013). Still waiting: First-hand experiences with Youth Mental Health Services in B.C.. Retrieved from: https://www.rcybc. ca/sites/default/files/documents/pdf/reports_publications/still_waiting.pdf Rose, L.E., Mallinson, R.K., & Gerson, L.D. (2006). Master, burden, and areas of concern among family caregivers of mentally ill persons. Archives of Psychiatric Nursing, 20(1), 41-51. doi: 10.1016/j.apnu.2005.08.009 Ryan, K.A. (1993). Mothers of adult children with schizophrenia: An ethnographic study. Schizophrenia Research, 11, 21-31. doi: 10.1016/0920-9964(93) 90034-G Roesch, S.C., Adams, L., Hines, A., Palmores, A., Vyas, P., Tran, C., … Vaughn, A.A. (2005). Coping with prostate cancer: A meta-analytic review. Journal of Behavioral Medicine, 28, 281-293. doi: 10.1007/s10865005-4664-z Schraeder K.E. & Reid G.J. (2015). Why wait? The effect of wait-times on subsequent help-seeking among families looking for children’s mental health services. Journal of Abnormal Child Psychology 43, 553-565. doi: 10.1007/s10802-014-9928-z Search Institute, 2013. Asset category: Positive identity. Retrieved: http://www. search-institute.org Search Institute. (2009). 40 Developmental assets for children grades K-3. Minneapolis, MN: Author. Shanahan, L., Copeland, W.E., Costello, E.J., & Angold, A. (2011). Child, adolescent and young adult-onset depressions: Differential risk factors in development? Psychological Medicine, 41, 2265-2274. doi: 10.1017/S0033291711000675 Shantall, T. (1989). Viktor Frankl’s existential theory. In W.F. Meyer, C. Moore & H.G. Viljoen (eds.), Personality theories – from Freud to Frankl (pp. 421439). Johannesburg: Lexicon. Sin, J., Moone, N., Harris, P., Scully, E., & Wellman, N. (2012). Understanding the experiences and service needs of siblings of individuals with first-episode psychosis: a phenomenological study. Early Intervention in Psychiatry, 6, 53-59. doi: 10.1111/j.1751-7893.2011.00300.x

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Chapter 8

Journeys from Shattered Dreams to Meaning-Making in a Resilience Framework— Families with Special Needs Children: Part One Laure-Marie Carignan Bridget1, Sam, and their four-year-old twin boys were thrilled at the birth of Lucy, a long-awaited arrival to complete their family. They had experienced so much joy as they had prepared the nursery together, each of the boys helping out with the selection of decorative themes and the painting of their baby sister’s room. They could hardly wait to bring their newest family member home! But… shortly after her birth, the obstetrician told Bridget and Sam that Lucy may have a chromosomal abnormality. This led to an agonizing period of three weeks while they waited for blood tests to reveal that Lucy had Mosaic Down Syndrome (MDS)2, a rare form of Down syndrome in which not all cell lines have an extra chromosome, and the usual physical features are not always present (Buckley & Bird, 2002). It was terrifying for them to wonder to what extent their daughter may be affected and what her future would entail. The rosy dreams they had for her were shattered. When the official diagnosis came, they learned that 40% of Lucy’s blood cells contained the extra chromosome responsible for Down Syndrome (DS). In time, they would discover where the affected cells were located in her body, and what this would mean for Lucy’s overall development. * By the time he was 10, Kevin’s parents, Steven and Paula, did not know what to do or where to turn. For years, Kevin’s sudden bizarre vocal exclamations had disrupted the peace of their quiet suburban home. Kevin often echoed his older siblings’ words and facial expressions, and seemed to deliberately provoke them into never-ending squabbles. “Family time” was anything but fun: continual arguments about rules of games they never wound up playing.

1  Case examples in this chapter are composite profiles from the author’s clinical practice. All names and identifying details have been changed to protect client confidentiality. 2  Mosaic Down syndrome is thus named because cells of the person’s genetic makeup come in two or more different types, like many small pieces of a mosaic pattern.

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Kevin never did well with transitions, and tantrums were a daily occurrence. He struggled with the “scratchiness” of his clothes – all tags needed to be removed from his clothing – and the ordeal of getting him dressed was exhausting for Steven and Paula, inevitably making all family members late for every activity. Steven and Paula became concerned that Kevin’s lengthy tantrums would become increasingly unmanageable and lead to physical damage to their home or to personal injury. Earlier attempts at professional intervention, starting when Kevin was in pre-school, had usually led to criticism of their parenting skills and dismissal of their concerns on the premise that he would “eventually grow out of it.” Yet now Steven and Paula were desperate, and so they returned once again to the medical system. This time, they were helped. After a diagnostic process lasting several months, Kevin was diagnosed with Asperger Syndrome (AS), a high functioning form of autism (HFASD or HFASC)3, when he was eleven. * Megan and Tim’s daughter Sara, 21, has just come out of a long bout in the hospital. She had originally been admitted for a joint-related issue, as is common for young adults with Cerebral Palsy (CP)4, but succumbed to a bacterial infection that kept her in hospital for several more months post-surgery. The family is concerned about Sara because she lost a whole year of community college due to her hospitalization. Her older sister Katie is in the last year of her undergraduate studies, and planning on getting married over the summer. Her younger sister Jane has already moved out with friends at the police academy. But what will happen to Sara? Over the years, Megan, as the stay-at-home mom, has cheered Sara on in her endeavours, spending countless hours helping Sara to painstakingly write assignments or study for exams. Tim has handled more of the physical demands related to Sara’s motor development in learning to walk and needing at times to be carried or helped in managing stairs. But now, Sara finds it very difficult to accept her parents’ help. 3

 The essential features of HFASD are i) persistent deficits in reciprocal social communication and interaction, and ii) restricted, repetitive patterns of behaviour (APA, 2013). Since May 2013, in countries using the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Kevin’s diagnosis would be Autism Spectrum Disorder (ASD) Level 1. Many expert diagnosticians retain the nomenclature of Asperger Syndrome which was previously recognized in the DSM-IV (1994) and the DSM-IV-TR (2000), by simply adding it in parentheses today (Attwood, 2015; Perry, 2014). Thus, today, Kevin would be diagnosed as having ASD Level 1 (Asperger Syndrome). 4  Cerebral palsy is a nonprogressive disorder of movement and posture, a dysfunction of the motor system characterized by one or more limbs not responding to brain stimulation, resulting from an injury during gestation or at birth. (Kavčič & Vodušek, 2005; Sankar & Mundkur, 2005; Wood, 2006).

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She gets upset when Megan tries to help her stay on track with her modified study program, and these situations usually find her dissolving into tears. Sara expresses that she feels caught between dependence on her parents and determination for autonomy. Megan and Tim are now getting older and wonder what will happen to Sara if her community college program doesn’t lead to a diploma and a job. The family decides it’s time to seek professional help.

These three families and their special needs in the areas of cognitive impairment (MDS), social impairment (HFASC), and physical impairment (CP), represent numerous other families who must deal with specific difficulties in addition to the usual challenges of the family life cycle journey – the chronological path reflecting typical transitions of the family from pregnancy through to the child’s adulthood (Abignente, 2004: McGoldrick & Shibusawa, 2012). Theoretical dimensions and empirical evidence relating to the challenges of cognitive, social, and physical impairment are integrated along these journeys. The Family Life Cycle Journey5 The family life cycle refers to a chronological path or journey that reflects typical stages and transitions in family development (Abignente, 2004; McGoldrick & Shibusawa, 2012), and includes different developmental tasks for both the individual and his or her family (Abignente, 2004). Thus, family functions and priorities may change as the family moves through the life cycle (Abignente, 2004; McGoldrick & Shibusawa, 2012). “In a developmental paradigm, the task of meeting individual or family developmental milestones is seen as intrinsic to … navigating through the next life stage…[Thus], the developmental tasks of family members are closely connected to the progression of the family as a whole through [its own] developmental stages” (Stoddart, 2005, p. 19). Transitions for any family are potentially stressful (Cowan & Cowan, 2012; McGoldrick & Shibusawa, 2012), but stress levels increase when a family member seems ‘stuck’ in a certain developmental stage due to cognitive, social, or physical impairment (Stoddart, 2005). Moreover, 5  For the purposes of this chapter, the family life cycle is simplified to one generation, characterized by the stages from pregnancy to young adulthood of the child with the cognitive, physical, or social impairment.

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family adjustment, coping, and adaptation may differ depending on its life cycle stage, becoming increasingly challenging when children are in different or overlapping developmental stages (Lin, 2000), which, for families with special needs children, include additional impairment-specific challenges. Figure 1 provides an overview of our three representative families in their journeys through the family life cycle. In Utero: “As long as the Baby is Healthy….” Megan’s second pregnancy appeared to be progressing well. The news during the first ultrasound that she was carrying twins was a shock, but for Megan, Tim, and Katie, 2, it was still exciting and welcome news. Preparations for the babies went full speed ahead as extra items were purchased or borrowed. It was a heady, hectic, joyous time in the life of the young family. At 24 weeks, Megan’s obstetrician couldn’t find a second heartbeat, and so Megan underwent another ultrasound. To the family’s dismay, they discovered that one of the twins had died at approximately 22 weeks. Six weeks later, Megan underwent another ultrasound which revealed that the dead twin was being resorbed into the uterine lining. Shortly thereafter, Megan and Tim were informed that this unusual occurrence known as “vanishing twin syndrome”, especially in the second trimester, substantially increased the risk of Cerebral Palsy for the surviving twin.6

When one dreams of having a child, the dream doesn’t usually include the possibility of a cognitive, social, or physical impairment. The couple guesses their future child’s sex or even outward physical characteristics (“will she look like you or me, or heaven forbid, Aunt Martha!”), and dreams of personality and career path (“the way he’s kicking, he’ll be outgoing and athletic – maybe a soccer champion!”…“she’ll have opportunities I never had – maybe she’ll be a doctor!”). But these types of comments soon give way to more sober considerations along the lines of “just as long as the baby is healthy…” When there are in utero indications of potential problems, as in Megan and Tim’s case, stress levels increase. Logistical preparations, excitement and joy, give way to worry and existential concerns over causal factors beyond biology and statistical analysis, such as self-blame, 6

 Kavčič & Vodušek (2005); Pharaoh & Adi (2000); Pharaoh (2001).

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a profound sense of injustice, or even a serious questioning of one’s spiritual beliefs (Rolland, 2012). The simultaneous journey to meaningmaking in resilience begins. This journey is discussed in the following chapter. Early Infancy: Birth to 36 months Bridget and Sam’s first month with their new baby Lucy was heartwrenching as they awaited the results of the blood tests that eventually confirmed her MDS diagnosis. At times, they could see the facial features that typically characterize Down Syndrome, yet not at other times. The twins were oblivious to the parents’ terrified speculations about Lucy’s future as they “helped out” joyfully with her daily needs. They learned to be gentle with their butterfly kisses on the top of her head, and they tried to remember not to sing her lullabies too loudly. Once the diagnosis was made, a period of intensive medical assessments to determine the extent of Lucy’s limitations began. Bridget learned the daily physical regimen she would need to use over the next several years with Lucy to strengthen her muscles and increase brain stimulation. Much to Bridget’s chagrin, the twins were placed in a pre-school program, as the demands of Lucy’s schedule of medical appointments and daily coaching became almost overwhelming and left little time for direct interaction with each of the twins. Bridget’s dream of home schooling was shattered. After managing household and mechanical repairs, Sam spent as much of his “spare” time as he could with the twins, leaving little time for his relationship with Bridget. Bridget began to feel very lonely and she worried about her ability to respond to Lucy’s needs as she grew older and didn’t meet the usual developmental milestones for posture, manual dexterity, and locomotive abilities. Her wellmeaning friends from church brought over casseroles, but didn’t stay and talk as they “knew she had to get back to Lucy” and they “didn’t want to disturb her and take too much of her time”. Lucy, despite the demanding schedule her impairment required, was a ray of sunshine in the household. Her affectionate demeanour and joyous response to her siblings and her parents always brought smiles. Bridget’s heart would melt when she saw how Lucy and the twins interacted with glee. As the twins approached the end of their pre-school years, they began to have play dates at home and learned how to deal with their friends’ curiosity about Lucy, whose facial features began to take on typical Down Syndrome characteristics. *

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Sara’s Apgar and Brazelton scores7 revealed poor muscle tone, reflexes, motor and physiological control. Megan and Tim’s hearts sank as they considered what they had been told when they were first advised of the vanishing twin syndrome in Megan’s second trimester. They felt that their worst fears were being confirmed, and they worried about how they would face the future. Megan meticulously recorded the slightest signs of Sara’s developmental milestones with reflexes, posture, manual dexterity, and locomotive abilities throughout her first 3 years, and brought her copious notes to the pediatrician. She and Tim felt they had to constantly “push the system” for further medical testing to determine Sara’s diagnosis, which was, as is often the case with CP, to take several years due to the need to rule out factors such as epilepsy, neurodegenerative disorders, or intellectual developmental delay8. Older sister Katie was eager to help out as Sara continued to grow in her infancy stage, but Megan and Tim were extremely vigilant about Sara’s fragile state and thus restricted Katie’s direct contact with Sara. Most notably and much to Katie’s chagrin, she couldn’t help out at feeding time, since Sara’s poor neck muscle control prevented her from keeping her head up, increasing her risk of choking by impairing her ability to swallow.9 * Before starting pre-school at age 3, Kevin could “read along” on bedtime stories that he had heard only once. He could repeat simple television show dialogues verbatim after only one viewing, sometimes setting these memorized scripts to music, singing them aloud while engaged in solitary imaginary play at home, often in the middle of the night. His unusually sophisticated “adult” vocabulary drew numerous admiring comments from strangers in the park or at the drugstore, but at home, the sudden whooping sounds he would make, the echolalia10 and mimicking of his siblings’ speech and facial expressions drove them to distraction. Kevin’s imitations sometimes appeared unnatural, especially when he seemed to look just beside a person’s face while doing them. He also made unusual flapping gestures with 7

 The Apgar score is a measure to determine general health of the newborn infant. It is taken immediately after birth and then about 5 minutes later. It measures such aspects as muscle tone, heartrate, and respiration to determine the overall health of the newborn. The Brazelton score is taken about 30 minutes after birth, and it is used to detect neurological abnormalities in the baby’s reflexes, motor and physiological control, as well as interactive capacities (Bee & Boyd, 2011). 8  Kavčič & Vodušek, 2005; Pharaoh & Adi, 2000; Pharaoh, 2001; Sankar & Mundkur, 2005, Wood, 2006. Wood in particularly cites a study in which over half of the children suspected of having CP at age 1 resolved motor impairment by the age of 7. 9  Kavčič & Vodušek, 2005; Wood, 2006. 10  Echolalia is a form of speech in which the child “echoes” or parodies another’s speech, often continuing to “echo” specific syllables or intriguing sounds.

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his hands whenever he flushed the toilet, and although this didn’t disturb anyone, it was troubling to his parents Steven and Paula. Steven and Paula first consulted their pediatrician about Kevin’s unusual mannerisms when he was about 2 ½ years old, but they felt dismissed when the pediatrician seemed impressed with Kevin’s conversational maturity and told the parents that Kevin would “grow out of” his other habits.

All families need to adjust to life after the birth of a child. Older siblings adjust to sharing their parents with a tiny creature so much smaller than they are, yet requiring so much more attention. This can bring out feelings of jealousy, yet also of enhanced self-esteem as they learn to competently embrace their protective older sibling role (Abignente, 2004; Bee & Boyd, 2017; McGoldrick and Shibusawa, 2012). There is potentially much joy as older siblings learn about sharing, and caring gently for the baby throughout its infancy. Additionally, they learn to deal with how others respond to their younger siblings, especially as young playmates notice cognitive, social, and physical differences (e.g. Huinker 2012). Sibling relationships can also be a challenge, however, be it jealousies stemming from the amount of parental attention required by special needs children, or impeded sibling interactions resulting from social impairment or emotion regulation issues (Gulyan 2012; Huinker, 2012; Lin, 2000). Cowan & Cowan (2012) point out the challenges inherent to the couple relationship following the birth of a child, when time and attention for one another is restricted, and each partner must adjust to the new role of being a parent. Sleep deprivation, common for parents of infants in their first few years, adds to the cumulative stress of not having enough time to devote to the couple relationship (Cowan & Cowan, 2012). Such challenges are compounded for couples with special needs children, as extra time and attention must be devoted to the child with the impairment, emotional and financial strain increases, and greater collaboration between partners is required; indeed, numerous studies indicate that children with disabilities are far more likely to experience their parents’ marital distress or divorce (Doron & Sharabany, 2013; Nurullah, 2013; Parker, Mandleco, Roper, Freeborn, & Dyches, 2011). And though each new birth brings on a slightly different parenting role, the adjustment to becoming a parent of a special needs child is much greater (Nurullah, 2013). A more detailed discussion of the issues contributing to a sense of parental inadequacy in the case of families with special needs children can be found in the next chapter.

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Pre-school Years: Age 3 to 6 At times Bridget and Sam felt exhausted by the multiple appointments Lucy continued to require throughout her preschool years, which they had to juggle in between the boys’ Cub Scout meetings and soccer practices, and the usual household concerns. Although Lucy was now in “therapy” mode – considerably less intense than the medical assessments and interventions of infancy – and requiring only weekly appointments for physio and formal speech therapy, she still needed daily coaching at home to strengthen the muscles she needed to be able to sit up and to begin crawling. The twins, now in primary school, helped with Lucy’s daily speech therapy at home, and continued to interact joyfully with her. They couldn’t wait to rush home after school to play with their little sister who was always happy to see them11. The twins were gentle in their interactions with Lucy, and always took her needs into consideration as any family activity was considered. They usually came up with creative ways their sister could participate, and Bridget and Sam were often overcome with emotion as they observed their sons’ altruistic natures shine through. As the twins started having sleepovers, they became more adept at responding to their friends’ inquiries about Lucy’s developmental delays. * Kevin continued to recite portions of television and movie scripts verbatim while in pre-school, mostly in response to social situations. The other children would recognize the phrases he was using and join in the fun, while the facilitators smiled at his ingenuity. They were puzzled that he didn’t seem to be able to learn how to tie his shoelaces, however. But their real concerns, which they often brought to Steven and Paula’s attention, had to do with how “bossy” Kevin could get with the other children, and how he had difficulty managing transitions between activities. While other children had the usual “rule” emphasis of their developmental stage12, Kevin’s seemed exaggerated. “He needs to learn to be more flexible” they would say, insinuating that the parents weren’t instilling these values in their child. At home, tantrums were frequent as Kevin had difficulty wearing certain clothes, or switching from one activity to another. Attempts to play simple games like “Go Fish”, as Kevin approached the end of 11  Ricci & Hodapp (2003) make reference to numerous studies indicating the positive personality traits of children with Down Syndrome, and the consequent positive impact on other family members. 12  Champagne (2005) observes the appeal to authority so prevalent in pre-school age children in her study on spirituality in young children.

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his preschool years, always seemed to lead to conflicts about the rules, especially between Steven, Kevin, and his older sister Julia. Steven and Paula tried several times to bring up what they thought was Kevin’s puzzling behaviour with the pediatrician, who recommended that they attend parenting classes and learn to relax, since Kevin was bound to “grow out of this stage”. * Megan and Tim continued to “push the system” for assessments as they observed Sara’s prolonged need for physical support in learning to walk. The official diagnosis of CP with GMFCS Level III13 came just three weeks before Sara’s 4th birthday, and her younger sister Jane was born a month later, completing the family. Katie, now 6, was proud to be a helper again with a newborn baby, and she revelled in her parents’ approval of her helping skills. She and Sara got along well, and Katie was always mindful of Sara’s limitations. With the official diagnosis, Megan and Tim had more access to needed medical equipment and services and were able to purchase a walker for Sara. Through intensive physiotherapy sessions, Sara eventually learned to use the walker on her own by the time she was 5 ½. At first, it was difficult for Megan to try to implement the physiotherapy exercises that she was beginning to learn from the therapists. Sara would often scream in pain at the movements in physio, and it was not uncommon for her to go into seizures.14 Sara would continue to need to be lifted and carried in many situations however, such as getting into and out of bed, using the commode or the staircase. Unfortunately at this time, Tim began to develop back trouble, and Sara was becoming too heavy for Megan to carry. This situation created significant physical and financial stress as Megan and Tim sought external help and applied for financial aid for more medical equipment such as a lift for Sara’s bed and the bathtub.

13  The Gross Motor Function Classification System (GMFCS) “classifies children with cerebral palsy into one of five levels according to their ability to sit and move independently. Level I children walk and run independently but balance is limited. Level II children walk independently with limitations on uneven surfaces and stairs. Level III children walk with aids, but may require transport over long distances. Level IV children walk with aids over short distances, but are transported in the community. Level V children require pelvic and trunk support to sit and usually have no independent means of mobility” (Knox 2008, p. 57). 14  Piggott, Hocking, & Paterson (2003) investigate the impact of the transition over the last few decades from institution-based to home environment physical therapy for newly-diagnosed children with CP, and note such stressors as parental confidence in implementation when exercises seem to inflict pain on their children or to trigger seizures.

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During pre-school years, children typically become more autonomous as they develop their postural, locomotive, fine motor and social skills (Bee & Boyd, 2017). For families of children with cognitive, social, or physical impairments, integration into preschool programs can be challenging (Attwood, 2015; Pillay, Girdler, Collins, & Leonard, 2012; Rentinck et al., 2007). Issues related to attention span, mobility, social skills, toilet training, and others render integration difficult. When one also considers numerous medical appointments and hospitalizations required for children with seizures, attendance in preschool programs can be sporadic, also affecting the child’s ability to integrate (Piggott et al., 2003). While modified pre-school programs exist, delays in diagnosis and lack of funding can limit access (e.g., Attwood, 2015; Stoddart, 2005; Graungaard & Skov, 2007). Sibling relationship issues continue as parental attention is still more highly focused on special needs children, family routines revolve around logistical requirements, and social impairment issues persist (Attwood, 2015; Gulyan, 2012; Huinker, 2012; Lin 2000). School Years: Age 6 to 12 Kevin’s second grade teacher remarked that although Kevin did well academically, participation in class discussion was erratic – he either monopolized the conversation or remained silent. On the playground, Kevin was teased about his unusual mannerisms and facial expressions, and was excluded from play groups. The few friendships that he did seem to make didn’t tend to last long, and Kevin often found himself alone, dreaming up elaborate ways of making friends. As Kevin grew older, he never seemed to grow out of the tantrum stage. His rigid thinking and constant correction of facts led to a semblance of arrogance and defiance, of utter disrespect for authority. Attempts at family fun times were still fraught with constant arguments about simple board game rules. Mealtimes were unpleasant, as it seemed as if no appropriate conversational protocol could be established. He had increasing difficulty getting ready for school on time, and the parents were blamed for his frequent tardiness. When Kevin’s tantrums started to become physically violent, the pediatrician finally agreed to Steven and Paula’s pleas for a referral into the mental health care system for an assessment. After a lengthy diagnostic process lasting several months, Kevin was officially diagnosed with Asperger Syndrome (AS) at the end of grade 5 (age 11)15, 15

 The average age of diagnosis for AS is between 8 and 11 in Australia (Attwood, 2015), and 11 in Canada (Stoddart, 2005).

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and was integrated into a social skills group while also participating in family therapy. During the treatment phase, Paula and Steven did meticulous research on AS and found that the diagnosis made sense with the many behaviours and characteristics Kevin had exhibited over the years. Furthermore, they became aware of communication patterns within the family that strongly reflected some of these traits and began to wonder if Kevin was the only family member on the autism spectrum.16 Steven, Paula, and Kevin discussed whether to share the diagnosis with school authorities, considering whether it would help or hinder to single him out from his peers.17 * Lucy’s medical appointments continued to reduce in frequency, and so she was able to attend school fairly regularly. Bridget’s time was now devoted to meetings with school staff as they began to determine the appropriate Individual Education Plan (IEP) for Lucy, as well as an adjustment in the focus of daily at-home coaching to include Lucy’s academic work. Lucy enjoyed school, and her sunny disposition helped her to fit in. It was thrilling for the whole family to cheer her on as she learned to read at age 10! Play dates for Lucy were complicated to plan, and the twins were now more involved in their own activities. While they had so far adapted to the constraints associated with having an at-home sibling with MDS, they began to show resentment towards Lucy when her limitations affected them socially. Bridget and Sam still had little time for each other, but created many happy family memories during their children’s school-age years. * Megan and Tim found that social interactions they planned for Sara had to remain quite limited due to Sara’s energy level and the complications of transportation. School days, while enjoyable for the most part, were physically demanding for Sara despite her IEP. Although she had been walking on her own with a cane and a leg brace18, which contributed to her sense of independence, she was exhausted by the end of the day and found the experience of doing homework to be so overwhelming that she frequently dissolved into tears. Sara compared her academic progress with her sisters, and by the end of primary school, even her younger sister Jane was ahead of her academically. 16  As many as 46% of first-degree relatives of individuals diagnosed with AS have a similar profile of abilities and behaviours, though often at a subclinical level, currently referred to as the Broader Autism Phenotype (BAP) (Attwood, 2015; Lai & BaronCohen, 2015). 17  A frequent dilemma as reported by Stoddart (2005) and Attwood (2015) and experienced in first author’s clinical practice. 18  Most children with CP acquire maximum motor control by about 8 years if in Levels I-III (Schuengel et al., 2009).

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Beyond Sara’s social restrictions, it seemed as if the entire family struggled just to make it through the day, leaving little time for interaction with the outside world. Although there were opportunities, there were many days when Megan just didn’t feel up to taking the girls out and facing the staring and the pitying glances her family received.

The social stigma component of impairment increases significantly in primary school (Altiere & Von Kluge, 2009; Attwood, 2015; Nurullah, 2013; Stoddart, 2005), and comprises not only teasing and bullying by peers at school, but also more or less subtle comparisons by parents of typically developing children, and a sense of being pitied or even blamed as parents (Altiere & Von Kluge, 2009; Huang, Kellet, & St John, 2010; Lawrence, 2008; Nurullah, 2013). The psychosocial impact on siblings can be significant (Gulyan, 2012; Huinker 2012; Lin 2000), and so social stigma can lead to isolation for the whole family (Nurullah, 2013; Lawrence, 2008). Although it might intuitively seem impossible to compare, parental stress generated by social stigma related to a non-visible impairment like Autism Spectrum Conditions (ASC), which can suddenly erupt as ageinappropriate behaviour, appears to be higher than that associated with more visible impairments such as Down Syndrome or Cerebral Palsy (Altiere & Von Kluge, 2009; Cappadocia, MacMullin, Viecili, & Lunsky, et al., 2012; Dabrowska & Pisula, 2010; Ricci & Hodapp, 2003; Scorgie, Wilgosh, Sobsey, & McDonald, 2001; Spratt, Saylor, & Macias, 2007; Weiss et al., 2012). As with Kevin above, perceived attitude or behaviour issues involving anger management, emotion regulation, or depression may lead to psycho-social intervention, and could be the first point of assessment in the pathway to a diagnosis of AS (Atwood, 2015; Stoddart, 2005). One of the main reasons children were referred to Asperger’s clinic in Vienna was suspension from school for inappropriate conduct (Asperger 1944/1991; Attwood, 2015). AS children may have difficulty perceiving adults as authority figures, particularly if proposed rules don’t make sense to them (Attwood, 2015). They may act in the place of adults to enforce rules among their peers, respond sarcastically to an adult who doesn’t have all the facts straight, or perseverate on minor details as a matter of principle (Attwood, 2015). AS children with exceptionally high IQ’s often appear arrogant and egocentric, and have difficulty admitting they have made a mistake, especially in matters of “the spirit” rather than “the letter” of the law (Attwood, 2015).

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Adolescence: Age 12 to 18 Another intense season begins for Bridget when Lucy reaches puberty, not only in terms of coaching Lucy through feminine hygiene concerns, but especially in terms of social interactions of which Lucy is now more keenly aware than ever. Lucy realizes that her older twin siblings have other social and emotional involvements with friends and girlfriends, and she feels excluded. Her own dating opportunities seem very limited. Furthermore, Bridget’s sister, Lucy’s favourite aunt, dies unexpectedly after a brief illness. Lucy begins to withdraw and is not her usual sunny self, and Bridget and Sam become very concerned for her as she seems unresponsive to them. Lucy enters psychotherapy at age 16. By the end of her adolescence, Lucy seems to feel much better. She becomes involved in the family’s church youth group and makes friends with other members who are similarly challenged. Bridget and Sam are ever mindful of Lucy’s emotional vulnerability and exercise caution with respect to her friendships, especially those of the opposite sex. The twins, although very busy with their lives, appear to have remembered their sister now that they are entering young adulthood, and once again there are happy times when all can be together in the same household. Bridget and Sam begin to interact once again as a couple, for the first time in many years, and while this is a relief, it also seems a bit awkward as their parental co-involvement has been the primary focus of their marital relationship. They seek professional help in this area, choosing to focus on their reconnection as a couple for the years ahead. * With the onset of puberty, Sara’s physical challenges present another major adjustment for Megan, who had become accustomed in the past few years to Sara’s increasing mobility and independence in matters of personal hygiene. Sara’s limitations continue to determine the family schedule, and although Katie and Jane love Sara, they find it difficult to have their own activities restricted. While they increase their social activities with peers and begin dating, Sara feels left out, keenly aware of the permanence of her disability and its potential impact on future romantic relationships, and her self-esteem plummets. Megan and Tim feel heartbroken for Sara, and while Megan longs to create social opportunities for Sara by encouraging her to join in church youth activities, she realizes that her daughter must make her own way in the world of social interaction. Moreover, such participation requires extensive planning – Sara cannot spontaneously use public transit as her sisters do, and careful forethought is required for any mobility concerns which may arise in social situations. *

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Kevin’s teenage years start out a bit more smoothly than his primary school experiences, as he systematically tests out social behaviour hypotheses. Academically, he continues to excel and is admitted into a competitive high school program, where he meets a few other classmates with HFASC. He finds that they “think alike” and he highly values their friendship, although to onlookers, their interactions seem stilted and exaggeratedly “geeky”. Steven and Paula are thrilled that Kevin seems to have found longer-lasting friendships, yet they worry about his tendency to attach quickly and wonder about his ability to deal with eventual shifts in these relationships. Sibling squabbles continue as Mark and Julia find it difficult to believe that Kevin can’t “just stop” his annoying behaviour, since he’s obviously able to manage in school. Conversation at meal times continues to be difficult, and there is a growing realization in the family that some BAP traits are shared by Steven and Julia, such as rigid ideas about “facts” and difficulty with conversational protocol. Through family therapy, the growing recognition of the shared BAP leads to unique ways of connecting with one another, such as being able to laugh about literal meanings of common expressions, or challenging each other in script verbatim from certain crime-solving television shows that Julia and Kevin both enjoy. Despite his academic brilliance, Kevin continues to struggle with executive functioning skills19. School expectations of his autonomy in studying habits, preparation for classes, and general organization increase every year. Kevin can no longer rely on innate ability, and he begins to receive coaching from a guidance counsellor at school.

Typical concerns of the adolescent stage in the family life cycle involve school success, dating, and preparing for the responsibilities of adulthood (Abignente, 2004; Bee & Boyd, 2017). But the natural tendency towards autonomy brings about new challenges for adolescents with disabilities (Shikako-Thomas, Bogossian, Lach, Shevell, & Majnemer, 2013). It is not unusual for adolescents with social, cognitive, or physical impairments to struggle with depression and suicidal thoughts as a result of realizing how different they are from their peers in new social situations such as dating (Khor, Melvin, Reid, & Grey, 2014; Stoddart, 2005; Shikako-Thomas et al., 2013). The issue of privacy for such an adolescent can also be complex: while he or she needs to develop intimacy in peer relationships, safety and security must be kept in mind in light of 19  Executive functioning skills are “goal-directed voluntary actions, including inhibitory control, planning, initiation, and cognitive set-shifting” (Happé & Charlton, 2012). These skills relate to the ability to plan and to prioritize, disregarding irrelevant facts or details, and to deal with sudden change, all of which consistently appear to be impaired in AS individuals (Attwood, 2015; Ozonoff, Pennington, & Rogers, 1991; Stoddart, Burke, & King, 2012).

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physical, cognitive, or social vulnerabilities (e.g. Attwood, 2015; Stoddart, 2005; Nurullah, 2013; Shikako-Thomas et al., 2013). The balance in the parental couple relationship as children grow in their adolescent autonomy begins to shift from co-parenting concerns towards a renewal of couple intimacy (Abignente, 2004: McGoldrick & Shibusawa, 2012). However, for families of a special needs child, the shift is never quite complete (e.g. Dykens, 2005; Shikako-Thomas et al 2013; Stoddart, Burke, & King, 2012). Concerns about eventual independent living may be heightened, as future adult opportunities that take into consideration specific impairments may seem limited, and parents worry about how their children will manage as young adults (Nurullah, 2013). Young Adulthood: What Level of Autonomy is Possible? By the time Lucy is 20, the twins have left home to pursue their own lives. Lucy can now be left alone at home for short periods of time, as long as there is plenty of support from neighbours. She has a regular schedule which involves ongoing physical therapy, yoga classes, and painting. Bridget and Sam enjoy Lucy’s friends on the Special Olympics bowling team she has joined. They have grown together as a couple, savouring the rewards of their years of investment in the family. However, they worry about Lucy’s future as they look toward Sam’s retirement years and the inevitable aging process which will limit their availability for Lucy. What level of responsibility will the twins need to carry towards their sister? * Mark leaves home when Kevin is 19, and surprisingly their relationship improves. Julia, Steven, and Kevin have come to embrace the fact that in addition to sharing some of the apparently “negative” BAP traits, strong systemizing skills can be extremely useful in learning the “rules” of interaction. Kevin continues to struggle with executive functioning skills. As a result, the more open academic structure at university has its drawbacks for Kevin, who insists on managing his own life yet can’t quite keep on top of everything. Now that he has begun dating a young lady, Steven and Paula worry about how this relationship will evolve and whether ultimately it is even possible for Kevin to succeed in a romantic relationship. There is also uncertainty about Kevin’s career future. How will his strong systemizing skills yet poor social know-how affect his employability?20 * 20

 Stoddart et al., 2012.

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Sara begins community college in a modified program that allows her to study part-time. Nonetheless, the program often seems overwhelming to her, and she dissolves into tears when Megan tries to help her organize her study schedule. While in her second year, Sara needs surgery on her leg, which leads to a prolonged hospitalization due to a bacterial infection she contracts shortly after the surgery. Sara ultimately loses that academic year, and upon her return, struggles with the physical demands of the program. Megan and Tim worry about Sara’s future: about her ability to cope with community college and to complete the program, and about her employability in the field. As they age themselves, they feel compelled to consider guardianship and power of attorney issues for Sara21. Katie, getting married in the summer, will then move to Europe for her new husband’s career. What then will Jane’s role be in Sara’s future?

Autonomy for the young adults portrayed in these families begins with events such as staying home alone for the first time, and proceeds to more involved considerations such as social interactions without parental supervision, and preparing for eventual independent living (ShikakoThomas et al., 2013). The striking feature of the family life cycle stage of young adulthood in families with children with social, cognitive, or physical impairment is ongoing care for the adult child’s future. While autonomy is generally the desired goal for adult children (e.g. Abignente, 2004), as parents of special needs children age, logistical concerns regarding financial, physical, and social provisions abound (e.g. Attwood, 2015; Lin, 2000; Stoddart et al., 2012). Concerns about their adult child’s employability come to the forefront as visible and non-visible impairment issues are seen to hinder the possibility of being hired or maintaining a job (e.g. Stoddart, 2012). Parents of young adults begin to consider their own physical and financial limitations in supporting their children as a result of the aging process (Abignente, 2004; Shikako-Thomas et al., 2013). In particular, concerns regarding adult sibling relationships can be fraught with perceived expectations and guilt regarding sibling duties and responsibilities (Gulyan, 2012: Huinker, 2012; Lin, 2000; Stoddart et al., 2012). At the same time, the gradual emotional maturity in adult siblings often allows to redefine their relationships as more supportive and meaningful despite the ongoing challenges of impairment (Bee & Boyd, 2011). 21

 Lin, 2000.

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Conclusion In this chapter, the family life cycle journeys of three families raising children with special needs arising from significant cognitive, social, or physical impairment were presented. These chronological journeys were simplified to coincide with the developmental stages of the child with special needs, though it is understood that in families with more than one child, two or more developmental stages can occur simultaneously, thus increasing the family’s challenges (Abignente, 2004; McGoldrick & Shibusawa, 2012). Moreover, it is certainly possible – and even likely, in the case of ASC (Attwood, 2015) – for more than one child to present with special needs. The couple relationship must be safeguarded if it is to prosper as the demands of raising children with special needs can be significant (Doron & Sharabany, 2013; Nurullah, 2013; Parker, Mandleco, Roper, Freeborn, & Dyches, 2011). The sense of parental inadequacy in such situations can become pervasive (Piggot et al, 2003; Schuengel et al, 2009). A simultaneous journey to that of the family life cycle must be undertaken – the journey from shattered dreams to meaning-making in a resilience framework, which is discussed in the next chapter. Abbreviations AS ASC BAP CP DS DSM

Asperger Syndrome Autism Spectrum Conditions (as per Baron-Cohen) Broader Autism Phenotype Cerebral Palsy Down Syndrome Diagnostic and Statistical Manual of Mental Disorders: • DSM-IV DSM, Fourth Edition (1994) • DSM-IV-TR DSM, Fourth Edition, Text Revision (2000) • DSM-5 DSM, Fifth Edition (2013) GMFCS Gross Motor Function Classification System HFASD High-functioning Autism Spectrum Disorder (as per DSM-5) HFASC High-functioning Autism Spectrum Conditions (as per BaronCohen) IEP Independent Education Plan MDS Mosaic Down Syndrome

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Reflection Questions 1) What are the similarities and differences between the paths to diagnosis for the three different cases presented in this chapter? 2) How can the family life cycle journey help to make sense of the challenges families with special needs children face? Glossary Family life cycle journey: the chronological path of the family from pregnancy through to the child’s adulthood References Abignente, G. (2004). Les racines et les ailes: ressources, tâches et embûches de la famille. Bruxelles: De Boeck Supérieur. Altiere, M.J. & Von Kluge, S. (2009). Searching for Acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual & Developmental Disability, 34(2), 142-152 APA (American Psychiatric Association) (1994). Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, DC: APA. APA (American Psychiatric Association) (2000). Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision. Washington, DC: APA. APA (American Psychiatric Association) (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Washington, DC: APA. Asperger, H. (1944/1991). Autistic psychopathy in childhood. Translated and annotated by U. Frith. In U. Frith (Ed.), Autism and Asperger Syndrome (pp. 37-92). Cambridge, UK: Cambridge University Press. Attwood, A. (2015). The Complete Guide to Asperger’s Syndrome (revised edition). UK: Jessica Kingsley Publishers. Kindle Edition. Bee, H. & Boyd, D. (2017). Les âges de la vie : psychologie du développement humain, 5ème édition. Imprimerie Solisco. Buckley S.J., & Bird G. (2002). What do we know about the needs of children with Mosaic Down syndrome and their families? Down Syndrome News and Update, 2(3), 97-99. doi: 10.3104/practice.179 Champagne, E. (2005). Reconnaître la spiritualité des touts-petits. Novalis Lumen Vitae. Cowan, P.A., & Cowan, C.P. (2012). Normative family transitions, couple relationship quality, and healthy child development. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 428-451). New York, NY: Guilford Press.

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Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280. doi: 10.1111/ j.1365-2788.2010.01258.x Doron, H., & Sharabany, A. (2013). Marital patterns among parents to autistic children. Psychology 4, 445-453. Published Online April 2013 in SciRes (http://www.scirp.org/journal/psych). Dykens, E.M. (2005). Happiness, well-being, and character strengths: Outcomes for families and siblings of persons with mental retardation. Mental Retardation, 43(5), 360-364. Glinianaia, S.V., Pharaoh, P.O., Wright, C., Rankin, J.M. (2002). Fetal or infant death in twin pregnancy: neurodevelopmental consequence for the survivor. Archives of Disease in Childhood. Fetal and Neonatal Edition, 86(1), 9-15. Graungaard, A.H. & Skov, L. (2007). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health & Development, 33(3), 296-307. Gulyan, S. (2012). Neurotypical siblings’ perceptions of their interactions with their sibling diagnosed with autism (Unpublished Master of Educational Psychology thesis). Happé, F., & Charlton, R.A. (2012). Aging in autism spectrum disorders: a mini-review. Gerontology, 58, 70-78. Huang, Y.-P., Kellett, U.M., & St John, W. (2010). Cerebral palsy: experiences of mothers after learning their child’s diagnosis. Journal of Advanced Nursing, 66(6), 1213-1221. doi: 10.1111/j.1365-2648.2010.05270.x Huinker, H. (2012). The experiences of individuals with a sibling diagnosed with an autism spectrum disorder. Master of Social Work Clinical Research Papers. Paper 40. Kavčič, A. & Vodušek, D.B. (2005). A historical perspective on cerebral palsy as a concept and a diagnosis. European Journal of Neurology, 12, 582-587. Khor, A., Melvin, G., Reid, S.C., Gray, K.M. (2014). Coping, daily hassles and behavior and emotional problems in adolescents with high-functioning autism/Asperger’s disorder. Journal of Autism and Developmental Disorders, 44, 593-608. doi: 10.1007/s10803-013-1912-x Knox, V. (2008). Do parents of children with cerebral palsy express different concerns in relation to their child’s type of cerebral palsy, age and level of disability? Physiotherapy, 94, 56-62. doi: 10.1016/j.physio.2007.04.005 Lai, M-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry, (2), 1013-1027. doi: 10.1016/S2215-0366(15)00277-1 Lawrence, L.P. (2008). Hardly a walk in the park: Examining disability through a mother’s eyes. Journal of Loss and Trauma, 13, 528-540. doi: 10.1080/ 15325020802173488 Lin, S. (2000) Coping and Adaptation in Families of Children with Cerebral Palsy. Exceptional Children, 66(2), 201-218. doi: 10.1177/001440290006600 205

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McGoldrick, M., & Shibusawa, T. (2012). The family life cycle. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 375-398). New York, NY: Guilford Press. Nurullah, A.S. (2013). “It’s really a roller coaster”: Experience of parenting children with developmental disabilities. Marriage & Family Review, 49, 412445. doi: 10.1080/01494929.2013.768320 Ozonoff, S., Pennington, B.F., & Rogers, S.J. (1991). Executive Function Deficits in High-Functioning Autistic Individuals: Relationship to Theory of Mind. Journal of Child Psychology and Psychiatry, 32(7), 1081-1105. Parker, J., Mandleco, B., Roper, S., Freeborn, D., & Dyches, T. (2011). Religiosity, Spirituality, and Marital Relationships of Parents Raising a Typically Developing Child or a Child With a Disability. Journal of Family Nursing, 17(1), 82-104. doi: 10.1177/1074840710394856 Perry, R. (2014). Asperger’s disorder on life support. Journal of Autism and Developmental Disorders, 44, 2072-2073. doi: 10.1007/s10803-014-2067-0 Pharaoh, P.O., & Adi, Y. (2000). Consequences of in-utero death in a twin pregnancy. Lancet, May 6:355(9215):1597-602. Pharaoh, P.O. (2001). Cerebral palsy in the surviving twin associated with infant death of the co-twin. Archives of Disease in Childhood. Fetal and Neonatal Edition, 84(2), 111-116. Piggot, J., Hocking, C., & Paterson, J. (2003). Parental Adjustment to Having a Child with Cerebral Palsy and Participation in Home Therapy Programs. Physical & Occupational Therapy In Pediatrics, 23(4), 5-29. doi: 10.1080/ J006v23n04_02 Pillay, D., Girdler, S., Collins, M. & Leonard, H. (2012) “It’s not what you were expecting, but it’s still a beautiful journey”: the experience of mothers of children with Down syndrome. Disability and Rehabilitation, 34(18), 1501-1510. doi: 10.3109/09638288.2011.650313 Rentinck, I.C.M., Ketelaar, M., Jongmans, M.J., Gorter, J.W. (2007). Parents of children with cerebral palsy: a review of factors related to the process of adaptation. Child: Care, Health and Development, 33(2), 161-169. doi: 10.1111/j.1365-2214.2006.00643.x Ricci L.A. & Hodapp R.M. (2003). Fathers of children with Down’s syndrome versus other types of intellectual disability: perceptions, stress and involvement. Journal of Intellectual Disability Research, 47, 273-284. Rolland, J. S. (2012). Mastering family challenges in serious illness and disability. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 452-482). New York, NY: Guilford Press. Sankar, C., & Mundkur, N. (2005). Cerebral Palsy – Definition, Classification, Etiology and Early Diagnosis. Indian Journal of Pediatrics, 72(10), 865-868. Schuengel, C., Rentinck, I.C.M., Stolk, J., Voorman, J.M., Loots, G.M.P., Ketelaar, M., Gorter, J.W., & Becher, J.G. (2009). Parents’ reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability. Child: Care, Health and Development, 35(5), 673-680. doi: 10.1111/j.1365-2214.2009.00951.x

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Scorgie, K., Wilgosh, L., Sobsey, D., & McDonald, J. (2001). Parent life meaning and transformational outcomes when a child has Down Syndrome. International Journal of Special Education, 16(2), 57-68. Shikako-Thomas, K., Bogossian, A., Lach, L.M., Shevell, M., Majnemer, A. (2013). Parents’ perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope. Disability and Rehabilitation 35(25), 2113-2122. doi: 10.3109/09638288.2013.770083 Spratt E.G., Saylor C.F., & Macias M.M. (2007). Assessing parenting stress in multiple samples of children with special needs (CSN). Preview. Families, Systems, & Health, 25, 435-449. Stoddart, K.P. (2005). Introduction to Asperger Syndrome: A developmentallifespan perspective. In K.P. Stoddart (Ed.), Children, Youth, and Adults with Asperger Syndrome: Integrating Multiple Perspectives (pp. 13-30). London, UK: Jessica Kingsley. Stoddart, K.P., Burke, L., & King, R. (2012). Introduction to Asperger Syndrome and Autism Spectrum Disorders in Adults. In K.P. Stoddart, L. Burke, & R. King (Eds.), Asperger Syndrome in Adulthood: A Comprehensive Guide for Clinicians (pp. 1-34). New York, NY: W. W. Norton & Company Inc. Weiss, J.A., Cappadocia, M.C., MacMullin, J.A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261-274. doi: 10.1177/1362361311422708 Wood, E. (2006). The Child with Cerebral Palsy: Diagnosis and Beyond. Seminars in Pediatric Neurology (13), 286-296. doi: 10.1016/j.spen.2006.09.009

Chapter 9

Families with Children with Special Needs: Part Two  The Journey from Shattered Dreams to Meaning-Making in a Resilience Framework Laure-Marie Carignan & Christian R. Bellehumeur

This chapter examines theoretical, empirical, and clinical aspects of spiritual development in families raising children with special needs arising from cognitive, social, or physical impairment. Spiritual development in the family is understood as a reciprocal process within the family influencing the development of each member’s capacity for five components of spirituality – transcendence, connectedness, purpose, meaning, and contribution – particularly as they manifest themselves in Walsh’s (2012; 2016) framework for family resilience. Theories and research on adaptation to loss, spiritual growth through adversity, and resilience are interwoven into the journeys of three composite-profile families of children diagnosed respectively with Mosaic Down Syndrome (MDS), HighFunctioning Autism Spectrum Conditions (HFASC), and Cerebral Palsy (CP)1. The three families presented in the previous chapter, with their special needs in the areas of cognitive impairment (MDS), social impairment (HFASC), and physical impairment (CP)2, represent numerous other families who make the journey from a place where dreams for ‘normalcy’ are shattered by the realization that their child falls outside the ‘norm’. This chapter continues to follow our three families on their respective journeys, interweaving theoretical perspectives on spiritual development – particularly meaning-making – within resilience. As the previous chapter considered the family life cycle journey – the chronological path from pregnancy through to the child’s adulthood – the present chapter explores the spiritual journey which takes the family through the 1

 A list of abbreviations is included with the previous chapter.  According to Sankar & Mundker (2005), the three most common life-long developmental disabilities are the ones represented by the three families in the previous chapter. 2

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diagnostic process from shattered dreams of ‘normalcy’ to the ‘new normal’ of adjustment and adaptation, upheld by a resilience framework allowing for meaning-making. Helpful Definitions Family resilience. A simple definition of family resilience is proposed by Walsh (2016): “the ability of a family, as a functional system, to withstand and rebound from adversity.” (p.14). Delage (2010) specifically attributes a meaning-making component to family resilience. Anaut (2010) suggests that family resilience is not part of the usual family life cycle, but a “new development” arising specifically out of adversity. Although some families are shattered by the chronic adversity brought on by cognitive, social, or physical impairment, many other families emerge stronger and more resourceful, not despite the adversity, but as a result of it (e.g. Anaut, 2010; Dykens, 2005; Scorgie, Wilgosh, Sobsey, & McDonald, 2001; Sorrentino & Delage, 2010; Walsh, 2016). Curiosity about this phenomenon has driven researchers to investigate resilience, first in terms of individual traits, then more recently in terms of family characteristics (Anaut, 2010; Gauthier Weber, 2011; Walsh, 2016). As cited in Gauthier Weber’s (2011) extensive review of resilience models, McCubbin & McCubbin’s (1987) classic typology, which was later revised (McCubbin, Thomas, & McCubbin, 1996), distinguishes between adjustment and adaptation following adversity. This classic resilience model emphasizes patterns of functioning within the family, which are used to meet and withstand the challenges of adverse conditions (Gauthier Weber, 2011; Walsh, 2016). Walsh (2012; 2016) also proposes a framework for family resilience, which involves “potential for recovery, repair, and growth in families facing serious challenges” (2012, p. 399). Resilience thus defined is a dynamic process that undergirds adjustment, adaptation, and coping (Anaut, 2010). Nguyen (2014) views coping as a way of “doing,” an external capacity to adjust to a challenging situation by specific action. By contrast, resilience has more to do with internal capacities, and can thus be understood as a way of “being” that allows for continual revision of coping strategies within family patterns of functioning, as seen in McCubbin & McCubbin’s classic model. As with Delage (2010), there is a meaning-making component in this way of “being.”

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Crisis or adversity has an impact on the whole family, and “key family processes mediate the adaptation of all members and their relationships” (Walsh, 2012, p.401). Walsh proposes three key dynamic processes in family resilience: Shared belief systems, organizational patterns, and communication processes. Spiritual development. Roehlkepartain, Benson, Ebstyne King, & Wagener (2006) propose spiritual development as a “core and universal dynamic in human development” (p. 5), and thus suggest it as an element worthy of inclusion in any developmental inquiry. But what do we mean by spiritual development? If we understand spiritual development as the development of various capacities required to experience the specific components of spirituality (Roehlkepartain et al., 2006), we also need to understand what is meant by spirituality. However, the literature has yet to come to a full consensus regarding a definition of “spirituality,” and by extension “spiritual development” (Bogdashina, 2013; Roehlkepartain et al., 2006; Zinnbauer, 2013). The notion of the sacred as the object of one’s transcendence or spiritual striving for connection is inherent in much of the literature, particularly in theistic spirituality (Zinnbauer, 2013). Other elements of spirituality include meaning-making (Frankl, 1946/1984; Kegan, 1982), connectedness (Harris, 1991), a sense of purpose (Frankl, 1946/1984), and of the ability to make contributions (Frankl, 1946/1984). Religious traditions or beliefs, though often considered separate from the experience of spirituality, are nonetheless interrelated in much of the literature (Roehlkepartain et al., 2006; Zinnbauer, 2013). Mahoney (2016), for example, considers that religion as an institution is specifically designed to facilitate spirituality. This researcher thus joins Pargament (1997), Roehlkepartain et al. (2006) and others in challenging the concept of a religion/spirituality dichotomy. For the purposes of this chapter, spiritual development will be considered as: The process of growing the intrinsic human capacity for selftranscendence, in which the self is embedded in something greater than the self, including the sacred. It is the developmental “engine” that propels the search for connectedness, meaning, purpose, and contribution. It is shaped both within and outside of religious traditions, beliefs, and practices. (Benson, Roehlkepartain, & Rude 2003, pp. 205-206).

Benson et al (2003) further point out that the exploration of spiritual development naturally fits with child and adolescent development themes. Furthermore, from a developmental systems theory perspective,

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reciprocal influences between all members of a system such as the family exist, and this is no less so in the realm of spiritual development (Lerner, Alberts, Anderson, & Dowling, 2006). Indeed, Mahoney’s (2016) research into relational spirituality reflects a clear shift from the understanding of spirituality as an individual process (“the spirituality of me”) to one in which spiritual emotions, cognitions, and behaviours are recognized within the context of developing, maintaining, and transforming relationships (“the spirituality of us”). In this chapter, the goal is to develop an understanding of how family members, especially families with children with special needs, reciprocally influence each other in their spiritual development. Furthermore, we will examine how the five components of spiritual development – transcendence, connectedness, meaning, purpose, and contribution – are integral parts of the family resilience framework proposed by Walsh (2012; 2016). Meaning-making. The definition of spiritual development provided above asserts that there is an intrinsic human capacity for transcendence of the self toward “something greater.” Benson et al. (2003) propose that this impulse gives rise to phenomena such as seeking meaning. “Meaning has been of interest to philosophers throughout the centuries; it has become a focal point for many theoretical paradigms in psychology and related mental health fields throughout the twentieth century” (Schulenberg, Baczwaski & Buchanan, 2014, p. 694). Indeed, the seminal works of psychiatrist Viktor Frankl (1946/1984; 1969; 1978/1985; 2010), who survived four Nazi concentration camps, were the first to demonstrate the therapeutic effectiveness of purpose and meaning in the face of unavoidable suffering and loss. In agreement with Frankl, the Schulenberg team (2014) further articulates that “…in some cases, when an individual experiences psychological distress, the discovery of meaning may serve as a means of galvanizing internal resources toward the alleviation of symptoms.” (p. 695). As discussed in the chapter on the identity-intimacy paradox within the couple relationship, Park’s (2010) extensive review of the meaning literature provides valuable distinctions between the concepts of global meaning, which refers to broad beliefs or schemas, situational meaning, referring to the meaning assigned to a stressful event or chronic adversity, and meaning-making, a process of reformulating one’s understanding of a given situation in order to restore global life meaning which has been disrupted. The meanings made from that process include acceptance of the adversity, a perception of growth as a result of the adversity,

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or a re-appraisal of one’s purpose and meaningful contributions in life (Park, 2010). The Journey from Shattered Dreams to Meaning-Making Concurrent with the life cycle journey of the three families presented in the previous chapter is the journey from shattered dreams to meaningmaking in a resilience framework. As Rolland (2012) points out, in the context of chronic adversity through illness or impairment, the family is challenged to give meaning to the experience in order to gain a sense of control even in the midst of uncontrollable circumstances. This spiritual journey involves the diagnostic process through to the “new normal” of adjustment and adaptation, undergirded by dynamic family resilience processes which encompass the five components of spiritual development mentioned at the beginning of this chapter: transcendence, connectedness, purpose, meaning, and contribution. Figure 2 depicts this meaning-making journey. In the upper left-hand corner of this figure, a fluffy cloud represents the initial joys of parental anticipation of the child’s future. Below this, we see a darker cloud looming ominously with the agony of shattered dreams as the realization dawns that there is something “wrong” with the child. The elements of this cloud, including the sense of loss, apprehensions about the future, sense of inadequacy, and existential questions, all constitute a crisis of meaning for the family facing the challenge of formally recognizing the cognitive, social, or physical impairment of their child. But according to Park (2010), this crisis of meaning can become a catalyst for change. The lightning bolt image portrays a back-and-forth movement between the crisis of meaning (“what’s wrong with my child?”) and the catalyst for change (“the new normal”) revolving around the diagnostic process itself. As will be discussed, the diagnostic process may be fraught with frustration, shock, despair, anger, denial, guilt, fear, grief and ironically, some relief as new purpose and situational meaning may be found. The fluffy cloud on the right with the silver lining represents the phases of adjustment (Gauthier Weber, 2011) or “coming to grips” (Piggot, Hocking, & Paterson, 2003), and of adaptation (Gauthier Weber, 2011) or “striving to maximize” (Piggot et al., 2003). Upheld by dynamic family resilience processes (Walsh 2012; 2016), the ‘new normal’ of adjustment and adaptation allows for a review of established patterns of family functioning, as well as meaning-making, a process of reformulating one’s

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understanding of a given situation in order to restore global life meaning which has been disrupted. The meanings made from this process can include acceptance of the adversity, a perception of growth as a result of it, or a re-appraisal of one’s purpose and meaningful contributions in life (Park, 2010). In utero: “As long as the Baby is Healthy…” The family life cycle journey and the journey from shattered dreams to meaning-making in resilience both start with joyous anticipation of the child’s birth. It is a time of building up expectations about the baby and what the parenting experience will be like, a time of joy and hope (e.g. Schuengel et al., 2009). If ever there was an experience of transcendence, or of “the self [being] embedded in something greater than the self, including the sacred” (Benson et al., 2003), the happy anticipation of the birth of a child would be among the most awe-inspiring. The dream of a ‘normal’, happy family life cycle carries with it the anticipation of connectedness among family members and a sense of contribution that the future parents will make in the life of this child, as well as the child’s own contribution to the lives of the parents and other siblings. This anticipation is filled with hope, creating a sense of meaning and purpose in accepting the responsibility of bringing new life into the world and nurturing it (Abignente, 2004; McGoldrick & Shibusawa, 2012). As future parents consider the myriad of possibilities that could unfold for their child, they may vacillate in their hopeful preferences regarding sex, temperament, and interests, but inevitably will state acceptance of whatever the child may be “as long as the baby is healthy…” “What’s Wrong with my Child?” Shattered dreams. The gradual realization that something is amiss in the child’s development often becomes a crisis of meaning for the family (Sorrentino & Delage, 2010). Whether it is a cognitive, social, or physical impairment, family life as initially imagined is significantly altered (Roland & Walsh, 2006; Sorrentino & Delage, 2010). Most often, this realization carries a tremendous sense of loss and questioning, which sometimes begins years before a formal diagnosis is made (Stoddart,

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The five components of spiritual development (Benson et al., 2003) appear in bold on this diagram.

**** Crisis of meaning – Walsh (2012, 2016). **** As discussed in chapter on identity-intimacy paradox, according to Park 2009, a negative event can be a catalyst for positive life change. **** Gauthier Weber (2011), from her review of several resiliency models, particularly the work of McCubbin, Thompson, & McCubbin (1996) as a revision of earlier typology models of McCubbin & McCubbin (1987), and also Piggot, Hocking, & Paterson (2003). In McCubbin et al’s work, the initial phase after diagnosis is called “adjustment”. Piggot et al. (2003) call this phase “coming to grips”. In McCubbin et al’s work, the next phase is called “adaptation”, which Piggot et al alternatively call “striving to maximize”. **** Walsh (2012, 2016) family resilience framework.

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2005). These lost hopes and aspirations for “normalcy” shatter the original anticipatory dreams, not only as a one-time occurrence, but with each new developmental milestone that the child is significantly delayed in reaching, each time requiring a “substantive revision of those rosy expectations” (King & Patterson, 2000, p. 17). Although dichotomy in resolution status is convenient for research purposes, it should not give the impression that there is a point in time when parents no longer experience negative reactions or grief. Moreover, as time passes and the child develops, the nature of the loss relative to what typically developing children are doing at that age makes parental resolution a life-long endeavor. (Rentinck, Ketelaar, Jongmans, Lindeman,, & Gorter, 2009, p. 675)

It is from that place of shattered dreams that couples like Bridget and Sam, Steven and Paula, and Megan and Tim start out on a journey in which a different ‘normal’ needs to be found, embraced, and carried forward with resilience to a place of transcendence and connectedness, where a sense of purpose, meaning, and contribution can be found. “I needed to grieve the loss of the dream and embrace a slower, more simple one. At times this was very hard. It was very hard to see Lucy’s tongue sticking out at the park when other babies’ tongues didn’t. It was a constant reminder of her mental handicap. Little things like that were thrown into our face to constantly make us face the new dream – to learn to accept and love Lucy.” (Bridget)

Apprehension about the child’s future. Worst case scenarios often plague parents as they observe their child and inevitably make comparisons with typically developing children. Apprehension grows as parents realize that indeed, their child is not meeting the usual developmental milestones (Bee & Boyd, 2017). As their child’s functioning continues to manifest a cognitive, physical, or social impairment, parents may wonder about their child’s future in terms of academic achievements, social networking abilities, and general autonomy. “It was heartbreaking to hear Kevin crying in his room when he would come home from grade school. He knew he was being rejected on the playground, and he desperately wanted to make friends. One time, he organized a Pokémon tournament at school. He spent countless hours planning every meticulous detail, and he was so thrilled when other kids showed up and seemed to enjoy it! He thought he had figured out how to make friends. But then, everything went back to the way it had been… I worry about him finding social support as he gets older… will he have a ‘normal’ life? ” (Paula) *

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“It’s great that Sara is in the modified program in community college again, but will she ever be able to find a job in her field with the limitations she has?” (Tim)

Sense of present and future parental inadequacy. Parenting is a highly challenging vocation under the best of circumstances, and an occasional sense of inadequacy as a parent is not unusual (Abignente, 2004). However, when faced with the likelihood of a child’s physical, cognitive, or social impairment, the sense of parental inadequacy can become pervasive (Piggot et al., 2003; Sorrentino & Delage, 2010). Fears about how one can handle the present and future physical, financial, psychological, and spiritual demands can be overwhelming during this time of uncertainty as to “what is wrong with my child”. “Prolonged and complicated emotional reactions of anxiety and sorrow may interfere with parents’ availability as caregivers for their child” (Schuengel et al., 2009, p. 674), further compounding the sense of parental inadequacy. Psychological and spiritual issues. Although most of the literature on parenting children with special needs presents an analysis of grief and associated emotional reactions (Cauble, 1988; Dabrowska & Pisula, 2010; Graungaard & Skov, 2007; Heiman, 2002; Jones & Passey, 2004; Khor, Melvin, Reid, & Gray, 2014; McStay, Trembath, Dissanayake, 2014; Ricci & Hodapp, 2003; Schuengel et al., 2009; Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2008; Spratt, Saylor, & Macias, 2007; Weiss, Cappadocia, MacMullin, Viecili, & Lunsky, 2012), the considerably more complex psychological and spiritual issues related to a sense of parental inadequacy can be profound when the possibility of a physical, cognitive, or social impairment in the child is suspected. Parental beliefs in the ability to be “strong enough” to parent without damaging the child’s self-esteem, and to maintain a positive outlook despite the circumstances, as well as beliefs about how they might be perceived as parents in their environment may waver in this time of uncertainty about the child’s development (e.g. Lawrence, 2008; Rentinck, Ketelaar, Jongmans, & Gorter, 2009). As mentioned in the previous chapter, social stigma related to the perception of being pitied or blamed by parents of typically developing children can be significant. For example, prior to confirmation of Asperger’s theory as to the biological basis for the cluster of symptoms bearing his name today, the cause of autism spectrum conditions was considered to be poor parenting (e.g. Baron-Cohen, 2008). Indeed, ‘parentectomy’, the removal of the child from the family environment in order for him to be ‘properly’ socialized, was a common form of treatment for such

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social impairment (e.g. Baron-Cohen, 2008). As pointed out by Stoddart (2005) and Attwood (2015), the vestiges of this early theory remains, contributing to delays in seeking a diagnosis as parents may fear the stigma of being challenged about their parenting skills. As another example, in a study conducted in Taiwan, where Confucianism strongly influences cultural perspectives, it was found that mothers of children with CP struggled with mistrust of medical authorities and felt accused of not following traditional practices (Huang et al., 2010). Additionally, the need to “save face” in the community strongly contributed to the sense of loss in realizing their child’s diagnosis: Expectations of ‘normal’ motherhood and fulfilling societal anticipation of giving birth to a healthy child were lost. Maintaining their husband’s family honour and prosperity, as well as saving face in their community were threatened. Mixed feelings of disbelief, rejection, self-blame and sadness were compounded by uncertainty about their child’s future. (Huang et al., 2010, p. 1213).

A sense of parental inadequacy can also instill itself as one probes one’s own spiritual resources to cope with the situation (Pillay, Girdler, Collins, & Leonard, 2012; Tarakeswahr & Pargament, 2001). Such questioning can relate not only to the self-transcendent experience, to one’s sense of connectedness with the sacred and with others sharing similar spiritual values, but also to one’s sense of purpose, meaning, and contribution (Anaut, 2010; Nadeau, 2001; Pillay et al., 2012; Rolland & Walsh, 2006; Rolland, 2012; Samios, Pakenham, & Sofronoff, 2012; Scorgie, Wilgosh, Sobsey, & McDonald, 2001; Smith et al 2008; Tarakeswahr & Pargament, 2001). “I did have to struggle with the church. Why were people just bringing me baby clothing and muffins? No one visited, no one got that I was so lonely and depressed. I was good at smiling. But I felt so alone in the midst of my own church community. I began to wonder if I really had something to contribute in that context or if I was being relegated to a peripheral status…” (Bridget)

As Rolland (2012) points out, when faced with the chronic adversity of prolonged illness or impairment, “we attempt to construct an explanation or story that helps us organize our experience.” (p. 474). In doing so, the situational meaning could be associated with the perception of “punishment” by the sacred as a causal element of the child’s impairment (Rolland, 2012), leading to a sense of spiritual inadequacy as a parent. Deeply rooted in self-concept is a parent’s sense of who they are as a person and how their innermost feelings and values are reflected in their

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views of their own child with an impairment. For example, one mother of a child with CP admitted to wondering if she was protecting her daughter or hiding herself when she avoided exposing her child to the “narrow-mindedness” of their small community (Shikako-Thomas et al., 2013). The experience of parenting a child with an impairment can lead to such self-discovery: Genetically determined behaviour in a child resonates with the significance it takes on in the story of the parents. This is how a Down syndrome child whose slow development and peaceful mood determined by a chromosomal anomaly resonates with one parent’s desire for altruism and another parent’s horror of sacrifice. (Delage & Cyrulnik, 2010, p. 12)3 * “When Lucy was born, terrifying questions came to my mind at first. I questioned how I could call myself a Christian and think such dark thoughts about mentally handicapped people. I had to face my own prejudices that I didn’t even know I had. I questioned God a lot with “why?” “why me?”. I had to struggle with asking God to let me see “Lucy” when I walked into her room and not “Down Syndrome Lucy…” (Bridget) * “Although I could never have admitted it at the time, there were nights when I would lay awake in despair at my own weakness as a parent, not just because I was so overwhelmed with all the demands that Sara’s condition placed on me, but also because of my doubts about whether my faith was strong enough to withstand such a trial, and whether my role as a mother would always be defined by this constant drudgery …I kept wondering if this was really what my life was meant to be about” (Megan)

Physical and financial issues. Nurallah (2013) discusses the possible physical and financial burdens facing parents of children with special needs, particularly before a diagnosis is made. These include physical tasks of feeding, lifting and carrying a child beyond the usual milestones of manual dexterity and physical mobility, as well as expenses for psychological and physical therapy, medical equipment and supplies, and can even extend to the need for extensive renovations in the home or a move. Such additional expenses may lead to a parental sense of physical and financial inadequacy.

3

 Translation by first author.

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“Although we didn’t want to dwell on the financial aspect – we wanted to think of ourselves as being concerned with the higher ideals of nurturing our daughter – the fact is that we worried about how we would pay for all the medical aids we anticipated that she would be needing. Without a diagnosis, we didn’t qualify for government tax credits4 that could help us afford things like respite care, in-home ergonomic assessments for required items like bathroom support bars for the commode, and medical transfer equipment…and then there was the physical toll. As Sara got heavier, she was harder to lift and I started having back problems, so my own chiropractic expenses went up…” (Tim)

Anxiety about the future of the family structure. Most parents naturally attempt to plan the organizational structure of their family, not only in terms of the number of children they would like to have, but also in terms of roles within the family, boundaries between family members, and boundaries between the family and the outside world (Abignente, 2004; Bellehumeur, 2014). Roles and boundaries may seem to develop on their own, but these are most often a reflection of previous patterns within each parent’s family of origin (Abignente, 2004). Inevitably, the realization that a child may have a physical, cognitive, or social impairment can lead to changes in family structure in terms of connectedness within the family and respective contributions (Delage, 2010; Sorrentino & Delage, 2010). Expected parental and sibling roles may need to be redefined as everyone may now be required to assume more responsibility than they would otherwise (Gulyan, 2012; Huinker, 2012; Sorrentino & Delage, 2010). As such, sibling relationships may not only reflect birth order and peer socialization (Bee & Boyd, 2017), but also caregiver and receiver roles which may not be optimally balanced for reciprocal connectedness and contribution between siblings (Gulyan, 2012; Huinker, 2012). The co-parenting aspect of the couple relationship needs to be balanced with spousal intimacy and connectedness, and this is often challenging in the best of circumstances (Abignente, 2004; Cowan & Cowan, 2012). The demands in an environment with children who have special needs further increases the complexity (e.g. Heiman, 2002; Nurullah, 2013). Cultural expectations may also affect the child’s future role towards parents. As Huang et al (2010) point out, in cultures in which adult children are expected to take care of their elderly parents; such roles 4

 Revenue Canada Tax Declaration Guide 2016.

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clearly need to be revised, with a likely increase in responsibility and perceived contribution from the other siblings. “I had always dreamed that I would be a stay-at-home Mom until the children went to school full-time. It’s what my mother did, and I had made sure before we got married that Sam felt the same way. The thing is, I expected my children to be at home with me too. It was so hard to finally decide that the twins had to go to pre-school so I could give Lucy what she needed. It felt sometimes as if I had different parenting roles with each of my children…” (Bridget) * “It was as if we always had to look out for Sara – ‘don’t forget your sister will need help with the stairs’, ‘make sure your sister gets invited too!’ – don’t get me wrong, I love my sister, but sometimes I wished that I could just be myself, you know, not ‘Sara’s little helper’. Now that Katie is moving to Europe with her husband, I worry that I will eventually be responsible for Sara. My parents aren’t getting any younger, and I guess I always knew I’d have to look out for Sara, but it gets overwhelming sometimes…” (Jane)

Existential questions related to transcendence, meaning, and purpose: “Why, God, why?” That age-old existential question as to the purpose of suffering may very well find its most acute expression in the parental experience. Parents who see their children suffer physically and emotionally, being ostracized in a world with little tolerance for ‘impairment’, with limited prospects according to societal standards, suffer keenly themselves (Lawrence, 2008; King & Patterson 2000). In seeking to understand the purpose of suffering, most believers will turn to their version of the sacred and ask the question “why?”, which may lead to an unparalleled experience of self-transcendence in the midst of their grief and spiritual struggle (e.g Lewis, C.S., 1960/2014; Sergi & Giguère, 2002). This self-transcendence, or ‘going beyond oneself into something greater’ may take on many forms, but the sense of spiritual growth towards an outcome which could not have occurred without the experience of impairment in a child is a theme which recurs in the literature (e.g. Dykens, 2005; Nurallah, 2013; Piggot et al., 2003; Pillay et al., 2012; Shikako-Thomas et al., 2013). “I have always considered myself to be a rather shy and unassuming person. But when it came to Lucy, I could be a tiger with medical professionals. She had no other advocate! I never expected to grow in that way…” (Bridget)

When faced with chronic adversity, “we attempt to construct an explanation or story that helps us organize our experience.” (Rolland, 2012,

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p. 474): causal beliefs are important, and such circumstances may lead to existential worries about spiritual inadequacy, as well as the sense of injustice or even about being “punished”. Such feelings of unfairness are often experienced by parents, and can translate into anger at God, at the disabled child, at society`s non-acceptance of the child, or at the medical system (Graungaard & Skov, 2007; Nurullah, 2013). Piggot et al (2003) identify how a number of parents in their study sought meaning for their situation through their faith and by asking existential questions related to purpose and meaning. Crisis or adversity can also become a call to the family to redefine its purpose and priorities through greater investment in connectedness within meaningful relationships (Walsh, 2012; 2016). “We did turn to God and ask the tough questions about how He could allow Sara to have these developmental issues that we didn’t even have a name for yet...we never really got a specific answer to that question, and upon reflection it probably doesn’t matter so much for us to know why…There was this moment when I was standing at the kitchen sink doing the dishes, and my tears were just pouring down into the dishwater as I poured out my fears to God, and there was just this quietness that came over me. It was as if God was reassuring me that He had chosen us specifically to be Sara’s parents, and Sara to be our daughter. It wasn’t clear to me if this was about what we could give to her, or if it was about how she would change us, or how the situation would build character and strength in all of our family – but that moment was so powerful… (Megan)

The diagnostic process: From crisis of meaning to catalyst for change Walsh (2012; 2016) identifies a “crisis of meaning” once it becomes evident that something is “wrong” with the child. But as Park (2010) and Delage (2010) suggest, this crisis of meaning can become the catalyst for change, which usually coincides with the diagnostic process that seeks to identify the “problem”. Frustration, shock, despair, anger, fear, grief, and… relief? The diagnostic process for each of our families was a worrying time. Even though Lucy’s diagnosis only took about three weeks, it was a harrowing experience for Bridget and Sam, who imagined the worst possible scenarios. For Megan and Tim, the four years’ wait was fraught with exhaustion in having to “push the system” for the definitive diagnosis of CP that would enable them to better help Sara, even though they understood that medical personnel needed to rule out other diagnoses first (Graungaard & Skov 2007).

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The diagnostic process for HFASC is usually the most prolonged, with the average age for a diagnosis of Asperger Syndrome being between age 8 and 11 (Attwood, 2015; Stoddart, 2005). Lai & Baron-Cohen (2015) point to the many difficulties in identifying HFASC due to learned social responses, which has led to a “lost generation” of people who have gone undiagnosed most of their lives. As Attwood (2015) points out, there are many pathways to an AS diagnosis, so that a child with behaviour problems in school may first be referred for a conduct disorder, which is only the beginning of the diagnostic process. However long it may take, the actual diagnosis of impairment may still come as a shock, leading into feelings of hopelessness and despair as the crisis of meaning takes on new proportions (e.g. Graungaard & Skov, 2007; Huang et al., 2010; Knox, 2008; Rentinck et al., 2009; Schuengel et al., 2009; Wachtel & Carter, 2008). As previously mentioned, anger related to causal attributions (Rolland, 2012) can be experienced towards God, the child, the medical system, and also towards the non-acceptance of society (Graungaard & Skov, 2007; Nurullah, 2013). For some parents, the diagnosis is only the beginning of the understanding of the full impact of the child’s impairment. For parents of children with CP, for example, the wide variations in the child’s ultimate abilities may not be known for years (Ketelaar et al., 2007; Piggot et al., 2003; Rentinck et al., 2007). According to Nurullah (2013): “This experience may create guilt, shame, denial, anger, and other negative emotions in [the parents] … they may find it difficult to accept their children with a developmental disability” (p. 425). During the diagnostic process, all of the inherent sense of parental inadequacy and anxiety from the “cloud of shattered dreams” in Figure 2 can resurge, giving rise to those same existential questions related to meaning and purpose (Huang et al., 2010; King & Patterson, 2000). Graungaard & Skov (2007) and Piggot et al (2003) also mention the possibility of denial of the child’s limitations, along with a refusal to accept the diagnosis. In the midst of all these strong, mixed emotions, several authors point to the experience of guilt felt by the parents (e.g. Huang et al., 2010; Piggot et al., 2003). If one considers Rolland’s (2012) causal attribution perspective, then whether God or fate or the medical system are ‘to blame’, parents inevitably can find a reason to consider themselves “punished”, inattentive to warning signs, and a host of other guilt-ridden appraisals of their situations (e.g. Huang et al., 2010). But beyond guilt, fear, and grief, (Piggot et al., 2003; Rentinck et al.,

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2009; Schuengel et al 2009), King & Patterson (2000) suggest that admitting the loss of the family dream is crucial to ultimately being able to experience personal growth in such circumstances. In their study on reconstructing life goals after the birth of a child with DS, King & Patterson (2000) use the term “stress related growth” to capture the ways that individuals perceive themselves to grow through negative life experiences. This corresponds to our definition of resilience, which is about rebounding from adversity and is a ‘new development’ that would not otherwise have occurred (Anaut, 2010; Walsh, 2016). As King & Patterson (2000) put it, “even goals that represent revisions of our best imagined futures still have the capacity to imbue life with positive purpose and meaning” (p. 26). Indeed, this may be one of the ways in which the crisis of meaning becomes a catalyst for change (Delage, 2010; Park, 2010). Such changes are often subtle: deeper intimacy with one’s partner, taking better care of oneself, seeing one’s own identity more clearly, feeling closer to God, learning to appreciate what we have, and so on (Park, 2010). Ironically, paradoxical feelings about a diagnosis are also common: worst fears are confirmed, yet there might be a sense of relief that suspicions were actually well-founded (e.g. Huang et al 2010; Stoddart 2005; Attwood 2015). “We thought about what our life would look like as a family, now that our dreams were shattered with the finality of a diagnosis…there were so many implications for Kevin’s future, for his social life, for his ability to get a job and to get along with employers and co-workers…we had to go to plan B and plan C and so on…but at the same time, there was a sense of relief , something we could get a handle on and work with…after all these years, we finally had a direction to go in, and we were surprised at how the pieces fell into place, how bizarre behaviours suddenly started to make sense. It was like a huge weight was lifted off our shoulders” (Steven) * “It would be years before we would know all the implications of Lucy’s MDS, as only 40% of her cells were affected with the extra chromosome. We didn’t really know what to expect. There was definitely fear – how much would she be able to do? How limited would she be? We grieved…oh, how we grieved! And little by little, we learned to find joy – in her achievements, in her smile, in the way that our twins were learning compassion, in the way I was learning patience…things we had never really thought about as ‘purpose’ for our family…” (Bridget)

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“This is the New Normal” The back-and-forth process between Walsh’s (2012; 2016) ‘crisis of meaning’ which becomes the ‘catalyst for change’ in Figure 2 culminates in the cloud with the silver lining representing the “new normal”. Two separate stages are represented here as per the classic McCubbin & McCubbin model (Gauthier Weber 2011): 1) the adjustment phase, labelled or “coming to grips,” and 2) the adaptation phase, “striving to maximize” (Piggot et al., 2003). Dynamic family resilience processes as identified by Walsh (2012; 2016), undergird and support adjustment and adaptation. Walsh’s (2012; 2016) family resilience framework focuses on strengths forged under stress, in response to crisis, and under prolonged adversity. It is grounded in a deep conviction in the potential of each family to gain resilience and grow through adversity, and assumes that no single model of family functioning fits all families or their situations. Therefore, function is assessed in context of each family’s values, structural and relational resources, and life challenges. Such a perspective challenges the deficitbased view of families as being damaged and unlikely to move beyond adversity. More specifically, this perspective draws out the potential within the family to foster healing through circumstances that can be framed as challenges inviting growth. It is important to note that the five components of spiritual development according to Benson et al. (2003) – transcendence, connectedness, meaning, purpose, and contribution – are reflected in Walsh’s (2012; 2016) family resilience framework. Adjustment or “coming to grips”. In the classic McCubbin & McCubbin model (Gauthier Weber, 2011), the adjustment phase is characterized by vulnerability as the family comes out of the diagnostic process. The family’s resources and established patterns of functioning are galvanized towards immediate problem solving and coping, the ‘action’ component of dealing with the reality of the diagnosis. But there is also a meaning component to the adjustment phase according to this model, as stressor appraisal takes place (Gauthier Weber 2011). Stressor appraisal at this stage shifts from “responding to the diagnosis in a thinking- and cognition oriented way … to an orientation to acting and caregiving in ways that are adapted to their children’s disability” (Schuengel et al 2009, p. 679). Borrowing from Bowlby (1980)’s concept of ‘resolution’, in which drastic, incompatible experiences are integrated by reorganizing internal working models, Schuengel et al (2009) argue that “resolution of reactions to child diagnosis is successful when thoughts, feelings

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and actions are coherent and focused on the present task of caring for the child with disabilities” (p. 674). Stating that approximately 80% of parents of children with CP ‘resolve’ their initial reactions of distress and anxiety related to the diagnosis, Schuengel et al (2009) attribute this high success rate to the shift in meaning which moves on from the initial existential questioning to action in the present reality: “… resolution for some parents was mainly evident from the way they discussed their feelings associated with the diagnosis, for others it was from the discussion of their thoughts and expectations regarding their children’s condition, and for still others it was from the focus on concrete actions taken to address their children’s need. Unresolved reactions to the diagnosis, however, showed themselves as thoughts and feelings regarding the diagnosis and caregiving which might interfere with comfortable interaction with the child, including distorted views on the child, emotional removal from the experience, and continued search for reasons.” (Schuengel et al., 2009 p. 674)

As understood by Piggot et al. (2003), the adjustment phase is one in which the family “comes to grips” with the reality of the impact of the child’s impairment following the diagnostic process, and is usually characterized by specific actions such as the implementation of an at-home regimen prescribed by the diagnosing team. Nguyen (2014) would understand this stage as “coping”, the actual “doing” of what needs to be done. Grief inevitably affects the capacity for adjustment, as it holds parents “in a state of suspended animation for a short period” (Piggot et al., 2003, p. 14). But eventually, most families of children with special needs adjust to the ‘new normal’, recognizing the unique routines and roles of their family as normalcy for them. As per the Piggot team, parents use strategies such as keeping up outward appearances of coping, and attempting to make meaning out of their situation. In particular, parents of children with CP struggle in the early phase of adjustment as in-home physical therapy may initially seem to be more harmful than beneficial due to the pain it causes the child (Piggot et al 2003). In the Piggot et al study, two paths seem significant in “coming to grips”: seeing improvement in the child’s functioning for the first time, understood as a result of the parent’s persistent involvement in at-home physical therapy, and reaching a “personal or spiritual insight, when suddenly things became clear that they needed to change and how to go about it” (p. 17). Reaching the breakthrough enables parents to look further than their own survival, and gives them a vision of the future and the positive outlook they need to move into the second phase of the process, “striving to maximise”. (Piggot et al., 2003, p. 17)

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Adaptation or “striving to maximize”. While many studies show that parents of children with disabilities experience higher stress levels than parents of typically developing children (e.g. Cauble, 1988; Dabrowska & Pisula, 2010; Graungaard & Skov, 2007; Heiman, 2002; Jones & Passey, 2004; Ricci & Hodapp, 2003; Schuengel et al., 2009; Smith et al., 2008; Spratt et al., 2007; Weiss et al., 2012), according to Rentinck et al (2007), “this is not necessarily related to lower levels of family adaptation” (p. 161). Nurullah (2013) highlights that although stress levels are considered to be high for families with HFASC, DS, or CP, such families are not generally characterized by high levels of pathology. The adaptation phase per McCubbin & McCubbin’s classic model (Gauthier Weber 2011) consists of the analysis of family patterns of functioning in order to identify those which have become inadequate or have deteriorated since the adjustment phase, which patterns should be retained or restored, and which new ones should be instituted. It is a more or less deliberate process allowing the family to experience more control over choice of strategies. “When Sara’s diagnosis of CP at GMFCS Level III finally came, we were able to apply for financial resources to purchase equipment like the lift for the bathtub. As I had been having back problems for some time, it was quite a blessing to have Megan and other family members learn how to use the equipment. It allowed us to switch our schedules so that I was putting the other girls to bed in the evening, and we discovered that we liked the switch, so we kept that pattern for a long time.” (Tim)

Patterns of functioning in the family include roles, boundaries, and rules, which can potentially lead to each family member’s sense of contribution as part of spiritual development (Abignente, 2004; Bellehumeur, 2014). In analyzing a family’s patterns of functioning with respect to boundaries, Sorrentino & Delage (2010) point out the importance of remembering that the child’s behaviour is not always a consequence of impairment. In addition, the expectation of obedience leads to a sense of belonging, of having one’s own place in the family, which directly relates to connectedness, especially in sibling relationships. Sorrentino & Delage (2010) also discuss two pitfalls related to boundaries that are often unconscious – one of rejection (distancing from), and the other of overprotection of the child with the impairment. As understood by Piggot et al (2003), adaptation or “striving to maximize” is a phase after adjustment, in which the family can go beyond responding to the physical needs of the circumstances (“doing what

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needs to be done”), and more purposefully choose patterns of functioning that will best suit their needs. In the Piggot team study, that phase began when parents became more motivated to participate in hometherapy programs, usually after seeing the child making progress. As Rentinck et al (2007) state, it is often necessary for parents to develop more than one coping style in response to the child who is diagnosed with CP, particularly due to the lack of clarity about the child’s prognosis, thus creating a need to deliberately choose the best patterns of response. The Rentinck team also suggest that adaptation is “not a single event but a multifactorial determined process over time” (p. 168), as different coping factors become important at different stages of the family life cycle. Another element of the adaptation or “striving to maximize” phase has to do with meaning-making, reflected in McCubbin & McCubbin’s classic model as the development of coherence and schemas (Gauthier Weber, 2011). It is clear that meaning-making attempts and meanings made are reported by most individuals facing highly stressful events. In fact, it seems logical that some sort of cognitive readjustment or meaningmaking process must occur following experiences of events that are greatly discrepant with one’s larger beliefs, plans, and desires” (Park, 2010, p. 290)

Internally congruent meaning systems within the family help to contain, reprocess, and re-transmit various sorts of information, such as attitudes, beliefs, values, goals, identity, and worldview (Park, 2010). A burgeoning area of research highlights measures of resilience, benefitfinding and meaning-making scales designed for families of children with special needs (e.g. Bayat, 2007; Nurullah, 2013; Samios et al., 2012; Scorgie et al., 2001). In the Shikako-Thomas et al (2013) study, for example, parents of adolescents with CP were invited to reflect on how “their perceptions of their adolescent’s disability evolved over time, and how, gradually, aspects that were previously perceived as problematic were accepted as part of their lives in a less negative manner” (p. 2116). Examples include overcoming a previously understood ‘lack of choices’ with innovative options (Shakiko-Thomas et al., 2013), appreciating a child’s personality (Nurullah, 2013), and refusing to be pitied because they consider every day a blessing with their child, whom they’ve come to know as a person, not a disability (Dykens, 2005; Pillay et al., 2012). “After praying for six months, God allowed me to walk into the room one day and find Lucy sitting in her crib and my thought was “Oh, Lucy, you are so cute”…without “Oh Down Syndrome Lucy”.

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I was so thankful. As I did therapy with her daily to help her muscles and to develop her brain I had to be very strict with myself that I was changing my thoughts from feeling sorry for myself and for Lucy to being so proud of her sweet, small accomplishments. That took a lot of work.” (Bridget)

Other important meanings made as identified in the Shikako-Thomas et al (2013) study include identity formation, such as the child’s acceptance of oneself as an individual with an impairment who can “voice opinions and achieve a positive sense of being in the world” (p. 2117). Particularly, this is a result of the “efforts parents made to ensure their child’s happiness and success in different life situations” (p. 2119), ultimately considered to be a contributing factor in the child’s perception of quality of life. Fisher & Goodley (2007) also found that parents of children with disabilities developed ‘counternarratives’: stories that resisted linear medical disability models and freed parents to enjoy their children as they were, allowing them to perceive life “as an open book rather than as a concluding chapter” (p. 66). According to Nurullah (2013), many researchers “recognize the positive effects that a child with a disability can have on the family” (p. 415), through coping skills, family harmony, spiritual growth, communication, and parental role sharing, all of which may contribute to ‘counternarratives’ of positive effects of having a child with a disability. Perhaps the most significant new schema or global meaning to emerge in the literature on adaptation to a child’s diagnosis of impairment is that of hope. The Shikako-Thomas team (2013) found that parental hope for a child with CP evolved from a concern about the child ‘getting better’ to that of ultimately ‘being happy’: Hope was a transient concept that evolved with time and was based on religion, spirituality, values and belief systems. Hope was initially anchored in parents’ perceptions of the choices available to their child, tied to their physical, cognitive and academic functioning and their ability to independently manage activities of daily living. Over time, parents reconciled previous aspirations for their child and based their hopes on abstract, metaphysical notions, such as hoping for their adolescent’s future happiness and long-term well-being.” (p. 2116)

Parents in Nurullah`s (2013) study reported developing the ability to create a positive outlook on life, patience, joy, resiliency, positive experiences and personal transformations, and often attributed this to a religious or faith foundation allowing them to create new meaning:

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In this study, parents narrated stories of how they came to understand themselves and their child’s disability through the prism of religious beliefs. Common to many of these accounts were beliefs that the child with a developmental disability was a blessing from God, sent to them for a purpose (p. 423)

Similarly, other authors recognize that spirituality can offer parents serenity that professionals need to honour (e.g. Dykens, 2005; Pillay et al., 2012; Sorrentino & Delage, 2010; Speraw, 2006). Dynamic family resilience processes. Walsh’s (2012; 2016) family resilience framework results from over three decades of clinical observations and social science research, and consolidates many concepts that are echoed throughout resilience research literature, including McCubbin & McCubbin’s classic model (e.g. Anaut, 2010; Cyrulnik, 2010; Gauthier Weber, 2011; Heiman, 2002; Jones & Passey, 2004; Lin, 2000; Rentinck et al 2007; Sorrentino & Delage, 2010). The framework is a conceptual map to assist clinicians in identifying and facilitating the development of dynamic family processes that can support optimal adjustment and adaptation. Three domains of family functioning are highlighted in this framework: — shared belief systems — family organizational patterns — communication processes According to Walsh (2012; 2016), these key processes support the potential for personal and relational transformation and growth, allowing the family to emerge stronger and more resourceful in meeting future challenges. Her framework identifies potential resources on the premise that “even in troubled families, islands of strength and resilience can be found” (p. 401) Shared belief systems. Several authors propose the importance of internally congruent beliefs in families facing adversity (e.g. Cyrulnik, 2010; Rolland, 2012; Walsh, 2012; 2016). Family beliefs about what is normal or abnormal, and the importance members place on conformity and excellence in relation to the average family, have far-reaching implications for adaptation to chronic disorders. When family values allow having a “problem” without selfdenigration, it enables members to seek outside help yet maintain a positive identity. When families define help seeking as weak and shameful it undercuts this kind of resilience. Essentially, with chronic disorders in which problems are to be expected, and the use of professionals

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and outside resources is necessary, a belief that pathologizes this normative process adds insult to injury. (Rolland, 2012, p. 472) According to Walsh (2012; 2016), shared family beliefs that promote resilience make meaning of adversity, create a positive outlook, and incorporate transcendence and spirituality. Making meaning of adversity. A relational view of adversity, in which the challenge is believed to be shared and to contribute to strengthening family relationships, contributes to making meaning of adversity. Likewise, normalization and contextualization of distress, in which problems are viewed as understandable human dilemmas, are also helpful shared family beliefs. Additionally, Walsh (2012; 2016) identifies that reframing the challenge as comprehensible, manageable, and meaningful to tackle can help to make meaning of the adversity as a shared family experience. Positive outlook. In Lin’s (2000) study on coping and adaptation in families of children with CP, ‘positive family appraisal’ was identified as the single most important factor contributing to the empowerment of families in their adaptation process. Shared family beliefs must be positive in focus to contribute to resilience (Woodman, Smith, Greenberg, & Mailick, 2015). In her family resilience framework, Walsh (2012) identifies elements of a positive outlook such as hope, which she describes as an ‘optimistic bias’ lending confidence to ‘overcome the odds’, encouragement which affirms strengths and potential, and active initiative and perseverance (a ‘can do’ spirit). She also identifies ‘mastery of the possible’ as an important element of a positive outlook, a concept that seeks to accept what cannot be changed and to tolerate uncertainty. Transcendence. This component of spiritual development is explicitly referenced in Walsh’s family resilience framework. It includes the recognition of larger values and purpose in the adverse situation, since “the paradox of resilience is that the worst of times can also bring out the best in the human spirit” (Walsh, 2012, p. 409). Shared religious faith and contemplative practices are seen as important in fostering family resilience. Likewise, inspiration, the envisioning of possibilities and life dreams, lending itself to creative expression and social action, is perceived as an important element of transcendence. Walsh (2012) also recognizes the transformative component of transcendence, reflected in the literature as learning or growing from adversity (e.g. Dykens, 2005; Nurullah, 2013; Park, 2010; Pillay et al., 2012). Surpassing oneself through innovation, personal growth and learning, spiritual gifts for the family and for society through the special needs child, are other powerful demonstrations of transcendence.

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As per Lerner et al (2006), reciprocal influences within the family occur in the realm of spiritual development. As Champagne (2005) points out, children have much to teach adults about learning to stop and appreciate the moment, to be filled with awe and wonder and all that their capacities for the imaginary entail. Such is transcendence, regardless of a cognitive, physical, or social impairment. “At times there is grief, and then other times great joy, much joy. I can honestly say Lucy has taught me joy like I could never have learned through anyone else. To appreciate the little things, the simple things and to learn how to laugh at things that would make someone else cry… watching as she decides to embrace life and press on in spite of anxiety … watching as she gets so much delight, even as a young adult, in small things like family movie night in the basement, a sleepover in her parents’ bed with Mom, and quiet evenings. The joys are countless...” (Bridget)

Family organizational patterns. Adaptability. Adaptability is characterized by a balance between flexibility and stability, and is recognized as a key feature in resilient families (Abignente, 2004; Anaut, 2010; Bellehumeur, 2011). Openness to change, stability that can counter disruption, flexible yet firm leadership in the family that allows for cooperative parenting are all features of adaptability in Walsh’s (2012; 2016) framework. Connectedness. Walsh and others (e.g. Anaut, 2010; Delage, 2010; Lin, 2000) identify the dynamic process of striving for connectedness through mutual support, collaboration, and commitment, and respect for individual needs and differences. Reconnection which seeks to repair cut offs and grievances is also an important factor. Purpose through roles. Family organizational patterns involve roles, rules, and boundaries between family members and between the family and the outside world (Abignente, 2004; Bellehumeur, 2014). As each member finds their own place and role in the family, a sense of purpose emerges (Abignente, 2004), even for the special needs child. As Sorrentino & Delage (2010) point out, being expected to obey family rules rather than being ‘excused’ on the basis of impairment contributes to a sense of belonging and purpose for the child. “Lucy is the sunshine in our family. Her easy-going and generally cheerful nature has so often helped us to put things in perspective.” (Sam) *

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“When we need to be sure about accuracy in remembering some detail, we can rely on Kevin. His focus on the ‘facts’ and literal understanding comes in handy. We really appreciate that about him.” (Steven) * “I know I can gripe sometimes about being expected to help with the dishes, but other times I’m really happy that my family thinks I’m ‘normal’ enough to have chores to do” (Sara)

Contribution through reciprocal influence. Healthy family organizational patterns required for resilience also develop the sense of contribution, particularly through the appreciation of reciprocal influences (Lerner et al., 2006). As each member of the family is appreciated in their unique characteristics, there is an inevitable reciprocity of influence that develops. When made explicit, each person can embrace their own contributions. “Once, when I told Kevin I was proud of him, he asked me why, saying ‘there needed to be evidence to support that statement’. I laughed and told him how just in the way he is, keeping me on my toes, making sure that ‘statements are supported by evidence’, he has helped all of us in the family express ourselves more clearly. His face just shone…” (Steven) * “Lucy and the twins have taught us so much. We had to come to terms with selfishness in our lives. We had to come to terms with what love really looked like and how to love even if it wasn’t what we had planned. We grew in our faith, as we had to lean on God so much more. To wrestle with what ‘good’ looks like and ‘blessings’… * As parents, it has taught us a bigger acceptance and has introduced us to a whole world that we weren’t a part of, like Special Olympics bowling. It has taught us how to parent slower and more gently. It has taught us the phrase “teachable moment” instead of frustration or self-pity.” (Bridget)

Communication processes. Many authors recognize communication processes that promote family resilience (e.g. Abignente, 2004; Anaut, 2010; Delage, 2010; Walsh, 2012; 2016). These include clear and consistent messages that clarify ambiguous information, limiting the anxiety of speculation, open emotional expression which allows for sharing of painful feelings and empathic response, as well as pleasurable interactions of humour and respite, and collaborative problem-solving. These communication processes allow all family members to contribute to the family context in a purposeful and meaningful way.

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Conclusion In this chapter, the journeys of three families raising children with special needs arising from significant cognitive, social, or physical impairment were presented. The concepts of family resilience, spiritual development, and meaning-making were introduced. In the journey towards “the new normal” of adjustment and adaptation, families are called to examine their patterns of functioning to determine which patterns remain adequate for the situation, which patterns deteriorate as a result of the situation, which patterns need to be modified, and which new patterns need to be adopted. Undergirding the process of adjustment and adaptation are key family resilience processes, which include family belief systems, the organizational structure of the family, and communication processes. Walsh’s (2012; 2016) key family resilience processes reflect the five components of spiritual development as per Benson et al (2003), namely: transcendence, connectedness, meaning, purpose and contribution. Reflection Question 1) How can the meaning-making journey be helpful for a family facing the prospect of challenges in one of their children? Glossary Adaptation or “striving to maximize” refers to a secondary phase after adjustment, in which the family is able to go beyond responding to the physical needs of circumstances (“doing what needs to be done”), and can more purposefully choose patterns of functioning that will best suit their needs (Piggot et al 2003). As an example, in-home physical therapy instructions are followed, and home routines are modified to purposefully accommodate this activity, so that the family schedule runs as smoothly as possible. Adjustment or “coming to grips” refers to the initial response to the diagnostic process, and is usually characterized by action related to the specific impact of the child’s impairment. (Piggot et al, 2003). As an example, in a family in which a child has been diagnosed with CP, instructions for in-home physical therapy are followed as a first response to the diagnosis.

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Coping pertains to adjustment. As Nguyen (2014) understands it, coping has to do with “doing”, whereas resilience has to do with “being”. Family life cycle journey: the chronological path of the family from pregnancy through to the child’s adulthood Family resilience: dynamic processes leading to new meanings over time, tending towards a positive outcome which allows for the growth of each member of the family (Delage, 2010). Anaut (2010) suggests that family resilience is not part of the usual family life cycle, but that it is a “new development” arising out of adversity. Walsh (2016): “the ability of the family, as a functional system, to withstand and rebound from adversity” p. 14 Global meaning: refers to broad beliefs or schemas, such as the global sense that one’s life has purpose and direction (Park, 2010) Meanings made: products of meaning-making, such as reattributions, reappraisals, perceived growth, or changed identity, global beliefs, global goals, or meaning in life (Park, 2010) Meaning-making, (journey of), in contrast to meaning in life, refers to a process of working to restore global life meaning when it has been disrupted or violated, typically by some major unpleasant or terrible life event Meaning system: a system of meanings made which contains, reprocesses, and re-transmits various sorts of information, such as attitudes, beliefs, values, goals, identity, and worldview (Park, 2010) Relational spirituality: spiritual emotions, cognitions, and behaviours that people may have as they strive to discover, maintain, and transform their relationships. According to Mahoney (2016), we can speak of relational spirituality “when the search for the sacred is, for better or worse, united with the search for human relationships” Situational meaning is the assigned meaning of a given stressful event which is developed from how one construes an event with respect to his or her well-being (Park, 2010). Spiritual development: the process of growing the intrinsic human capacity for self-transcendence, in which the self is embedded in something greater than the self, including the sacred. It is the developmental “engine” that propels the search for connectedness, meaning, purpose and contribution. It is shaped both within and outside of religious traditions, beliefs, and practices” (Benson, Roehlkepartain, & Rude 2003, pp. 205-206).

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References Abignente, G. (2004). Les racines et les ailes: ressources, tâches et embûches de la famille. Bruxelles: De Boeck Supérieur. Anaut, M. (2010). Les processus de résiliences familiales. In M. Delage & B. Cyrulnik (Eds.), Famille et résilience (pp. 39-59). Paris: Odile Jacob. Attwood, A. (2015). The Complete Guide to Asperger’s Syndrome (revised edition). UK: Jessica Kingsley Publishers. Kindle Edition. Baron-Cohen, S. (2008). Autism and Asperger Syndrome. New York, NY: Oxford University Press. Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702-714. doi: 10.1111/j.13652788.2007.00960.x Bee, H. & Boyd, D. (2017). Les âges de la vie : psychologie du développement humain, 5ème édition. Imprimerie Solisco. Bellehumeur, C. (2011). Rapprochements entre la résilience, la spiritualité et l’imaginaire Durandien. Counselling et spiritualité 30(1), 45-70. Bellehumeur, C.R. (2014). Quelques applications de l’imaginaire durandien à l’étude de la famille. In K. Demasure, É. Champagne, R. Martinez de Pison, & M. Rovers (Eds.), Family’s Many Faces – La famille au pluriel (pp. 3-18). Leuven: Peeters. Benson, P., Roehlkepartain, E., & Rude, S.P. (2003). Spiritual Development in Childhood and Adolescence: Toward a Field of Inquiry. Applied Developmental Science, 7(3), 205-213. Bogdashina, O. (2013). Autism and Spirituality: Psyche, Self and Spirit in People on the Autism Spectrum. London, UK: Jessica Kingsley. Kindle Edition. Bowlby, John (1988). A Secure Base: Parent-Child Attachment and Healthy Human Development. London, UK: Routledge. Canada Revenue Agency, (2016). Revenue Canada Tax Declaration Guide 2016. www.cra-arc-gc.ca. Accessed electronically August 20th 2016. Cauble, A.E. (1988). Parental Coping in Families of children with cerebral palsy (Unpublished doctoral dissertation). University of Minnesota. Champagne, E. (2005). Reconnaître la spiritualité des touts-petits. Novalis Lumen Vitae. Cowan, P.A., & Cowan, C.P. (2012). Normative family transitions, couple relationship quality, and healthy child development. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 428-451). New York, NY: Guilford Press. Cyrulnik, B. (2010). Préface. In M. Delage, & B. Cyrulnik (Eds.), Famille et resilience (pp. 7-13). Paris: Odile Jacob. Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280. doi: 10.1111/j.13652788.2010.01258.x Delage, M. (2010). La famille confrontée au traumatisme. Déchirure des liens et résilience. In M. Delage & B. Cyrulnik (Eds.), Famille et résilience (pp. 17-38). Paris: Odile Jacob.

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Dykens, E.M. (2005). Happiness, well-being, and character strengths: Outcomes for families and siblings of persons with mental retardation. Mental Retardation, 43(5), 360-364. Fisher, P., & Goodley, D. (2007). The linear medical model of disability: Mothers of disabled babies resist with counter-narratives. Sociology of Health & Illness, 29, 66-81. Frankl, V.E. (1969). The will to meaning. New York: New American Library. Frankl, V. (1984). Man’s Search for Meaning. New York, NY: Washington Square Press. (originally published 1946). Frankl, V. (1985). The Unheard Cry for Meaning: Psychotherapy and Humanism. New York, NY: Washington Square Press (originally published 1978). Frankl, V. (2010). The Feeling of Meaninglessness: A Challenge to Psychotherapy and Philosophy. Edited by Alexander Batthyány. Milwaukee, WI: Marquette University Press. Gauthier Weber, J. (2011). Individual and Family Stress and Crises. Thousand Oaks, CA: Sage publications. doi: 10.4135/9781452274720. Graungaard A.H., & Skov L. (2007). Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled. Child: Care, Health & Development, 33(3), 296307. Gulyan, S. (2012). Neurotypical siblings’ perceptions of their interactions with their sibling diagnosed with autism (Unpublished Master of Educational Psychology thesis). Harris, M. (1991). Dance of the Spirit: The 7 Steps of Women’s Spirituality. New York, NY: Bantam Books. Heiman, T. (2002). Parents of children with disabilities: Resilience, coping and future expectations. Journal of Developmental and Physical Disabilities, 14, 159-171. doi: 10.1023/A:1015219514621 Huang, Y.-P., Kellett, U.M., & St John, W. (2010). Cerebral palsy: experiences of mothers after learning their child’s diagnosis. Journal of Advanced Nursing, 66(6), 1213-1221. doi: 10.1111/j.1365-2648.2010.05270.x Huinker, H. (2012). The experiences of individuals with a sibling diagnosed with an autism spectrum disorder. Master of Social Work Clinical Research Papers. Paper 40. Jones J., & Passey J. (2004). Family adaptation, coping and resources: parents of children with developmental disabilities and behaviour problems. Preview. Journal on Developmental Disabilities, 11 (Special issue: special issue on families of individuals with DD), 31-46. Kegan, R. (1982). The Evolving Self: Problem and Process in Human Development. Cambridge, MA: Harvard University Press. Khor, A., Melvin, G., Reid, S.C., Gray, K.M. (2014). Coping, daily hassles and behavior and emotional problems in adolescents with high-functioning autism/Asperger’s disorder. Journal of Autism and Developmental Disorders, 44, 593-608. doi 10.1007/s10803-013-1912-x King, L.A., & Patterson, C. (2000). Reconstructing life goals after the birth of a child with Down Syndrome: Finding happiness and growing. International Journal of Rehabilitation and Health, 5(1), 17-30.

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Knox, V. (2008). Do parents of children with cerebral palsy express different concerns in relation to their child’s type of cerebral palsy, age and level of disability? Physiotherapy, 94, 56-62 doi: 10.1016/j.physio.2007.04.005 Lai, M-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry, (2), 1013-1027. doi: 10.1016/S2215-0366(15)00277-1 Lawrence, L.P. (2008). Hardly a walk in the park: Examining disability through a mother’s eyes. Journal of Loss and Trauma, 13, 528-540. doi: 10.1080/ 15325020802173488 Lerner, R.M., Alberts, A.E., Anderson, P.M., & Dowling, E.M. (2006). On making humans human: spirituality and the promotion of positive youth development. In E. Roehlkepartain, P. Ebstyne King, L. Wagener, & P. Benson (Eds.), The Handbook of Spiritual Development in Childhood and Adolescence (pp. 60-72). Thousand Oaks, CA: Sage Publications. Lewis, C.S. (1960/2014). A Grief Observed. London, U.K.: Faber & Faber. Lin, S. (2000) Coping and Adaptation in Families of Children with Cerebral Palsy. Exceptional Children, 66(2), 201-218. doi: 10.1177/001440290006600 205 Mahoney, A. (2016). Faith and Families: The Scientific Pursuit of Relational Spirituality for Partners and Parents. In Jeffrey Levin (Ed.), Religion and the Social Sciences: Basic and Applied Research Perspectives. Philadelphia, PA: Templeton Press. McGoldrick, M., & Shibusawa, T. (2012). The family life cycle. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 375-398). New York, NY: Guilford Press. McStay, R., Trembath, D., Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44, 3101-3118. doi: 10.1007/s10803-014-2178-7 Nadeau, J.W. (2001). Family construction of meaning. In R. Neimeyer (Ed.), Meaning reconstruction and the experience of loss (pp. 95-111). Washington: DC. American Psychological Association. Nurullah, A.S. (2013). “It’s really a roller coaster”: Experience of parenting children with developmental disabilities. Marriage & Family Review, 49, 412445. doi: 10.1080/01494929.2013.768320 Nguyen, T.T. (2014). Images of God, resilience, and the imaginary: A study among Vietnamese immigrants who have experienced loss. Doctoral Dissertation in Counselling and Spirituality, Saint Paul University, Ottawa, Ontario, Canada. Pargament, K.I. (1997). The Psychology of Religion and Coping: Theory, Research, Practice. New York, NY: Guilford Press. Park, C.L. (2010). Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment stressful life events. Psychological Bulletin, 136(2), 257-301. Piggot, J., Hocking, C., & Paterson, J. (2003). Parental Adjustment to Having a Child with Cerebral Palsy and Participation in Home Therapy Programs. Physical & Occupational Therapy in Pediatrics, 23(4), 5-29. doi: 10.1080/ J006v23n04_02

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Pillay, D., Girdler, S., Collins, M. & Leonard, H. (2012). “It’s not what you were expecting, but it’s still a beautiful journey”: the experience of mothers of children with Down syndrome. Disability and Rehabilitation, 34(18), 1501-1510. doi: 10.3109/09638288.2011.650313 Rentinck, I.C.M., Ketelaar, M., Jongmans, M.J., & Gorter, J.W. (2007). Parents of children with cerebral palsy: a review of factors related to the process of adaptation. Child: Care, Health and Development, 33(2), 161-169. doi: 10. 1111/j.1365-2214.2006.00643.x Rentinck, I., Ketelaar, M., Jongmans, M., Lindeman, E., & Gorter, J.W. (2009). Parental reactions following the Diagnosis of Cerebral Palsy in their young child. Journal of Pediatric Psychology, 34(6), 671-676. doi: 10.1093/jpepsy/ jsn103 Ricci L.A., & Hodapp R.M. (2003). Fathers of children with Down’s syndrome versus other types of intellectual disability: perceptions, stress and involvement. Journal of Intellectual Disability Research, 47, 273-284. Roehlkepartain, E., Benson, P.L., Ebstyne King, P., & Wagener, L. (2006). Spiritual Development in Childhood and Adolescence: Moving to the Scientific Mainstream. In E. Roehlkepartain, P. Ebstyne King, L. Wagener, & P. Benson (Eds.), The Handbook of Spiritual Development in Childhood and Adolescence (pp. 1-33). Thousand Oaks, CA: Sage Publications. Rolland, J.S., & Walsh, F. (2006). Facilitating family resilience with childhood illness and disability. Current Opinion in Pediatrics, 18(5), 527-538. Rolland, J.S. (2012). Mastering family challenges in serious illness and disability. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 452-482). New York, NY: Guilford Press. Samios, C., Pakenham, K., & Sofronoff, K. (2012). Sense making and benefit finding in couples who have a child with Asperger syndrome: An application of the actor-partner interdependence Model. Autism, 16(3), 275-292. doi: 10.1177/1362361311418691 Sankar, C., & Mundkur, N. (2005). Cerebral Palsy – Definition, Classification, Etiology and Early Diagnosis. Indian Journal of Pediatrics, 72(10), 865-868. Schuengel, C., Rentinck, I.C.M., Stolk, J., Voorman, J.M., Loots, G.M.P., Ketelaar, M., Gorter, J.W., & Becher, J.G. (2009). Parents’ reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability. Child: Care, Health and Development, 35(5), 673-680. doi: 10.1111/j.1365-2214.2009.00951.x Schulenberg, S., Baczwaski, B., & Buchanan, E. (2014). Measuring Search for Meaning: A Factor-Analytic Evaluation of the Seeking of Noetic Goals Test (SONG). Journal of Happiness Studies, 15, 693-715. doi: 10.1007/s10902013-9446-7 Scorgie, K., Wilgosh, L., Sobsey, D., & McDonald, J. (2001). Parent life meaning and transformational outcomes when a child has Down Syndrome. International Journal of Special Education, 16(2), 57-68. Sergi, C., & Giguère, P.A. (2002). Y a-t-il des étapes dans la vie spirituelle? Lumen Vitae, 2, 143-151. Shikako-Thomas, K., Bogossian, A., Lach, L.M., Shevell, M., Majnemer, A. (2013). Parents’ perspectives on the quality of life of adolescents with

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cerebral palsy: trajectory, choices and hope. Disability and Rehabilitation, 35(25), 2113-2122. doi: 10.3109/09638288.2013.770083 Smith L.E., Seltzer M.M., Tager-Flusberg H., Greenberg J.S., & Carter A.S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38, 876-889. Sorrentino, A.M., & Delage, M. (2010). Promouvoir la résilience dans les familles d’enfants déficients. In M. Delage & B. Cyrulnik (Eds.), Famille et résilience (pp. 225-240). Paris: Odile Jacob. Speraw, S. (2006). Spiritual experiences of parents and caregivers who have children with disabilities or special needs. Issues in Mental Health Nursing, 27(2), 213-230. Spratt, E.G., Saylor, C.F., & Macias, M.M. (2007). Assessing parenting stress in multiple samples of children with special needs (CSN). Preview. Families, Systems, & Health, 25, 435-449. Stoddart, K.P. (2005). Introduction to Asperger Syndrome: A developmentallifespan perspective. In K.P. Stoddart (Ed.), Children, Youth, and Adults with Asperger Syndrome: Integrating Multiple Perspectives (pp. 13-30). London, UK: Jessica Kingsley. Tarakeswahr, N., & Pargament K.I. (2001). Religious coping in families of children with autism. Focus on Autism and Other Developmental Disabilities, 16, 247-260. Wachtel, K., & Carter, A.S. (2008). Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism: The International Journal of Research and Practice, 12, 575-594. Walsh, G. (2012). Family resilience: strengths forged through adversity. In F. Walsh (Ed.), Normal Family Processes (4th Edition) (pp. 399-427). New York, NY: Guilford Press. Walsh, F. (2016). Strengthening Family Resilience (3rd Edition). New York, NY: Guilford Press. Weiss, J.A., Cappadocia, M.C., MacMullin, J.A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261-274. doi: 10.1177/1362361311422708 Woodman, A.C., Smith, L.E., Greenberg, J.S., & Mailick, M. (2015). Change in autism symptoms and maladaptive behaviours in adolescence and adulthood: The role of positive family processes. Journal of Autism and Developmental Disorders, 45, 111-126. doi: 10.1007/s10803-014-2199-2 Zinnbauer, B.J. (2013). Models of healthy and unhealthy religion and spirituality. In K.I. Pargament (Ed.), APA Handbook of Psychology, Religion, and Spirituality, Vol 2: An Applied Psychology of Religion and Spirituality (pp. 71-89). American Psychological Association.

Chapter 10

R.E.A.L. Tools for Everyday Parenting  A Rational-Emotive Attachment Logotherapy Approach Laura Lynne Armstrong Dan remembers the pure joy that he experienced when he first held his newborn daughter, Charlotte. Through infancy and toddlerhood, Dan’s relationship with Charlotte was secure. It was hard for him to remember a “bad day” during this time. He felt lucky to have dodged the terribletwo and threenager bullets – or perhaps he just successfully navigated these stages. Charlotte was a happy child; he was a happy dad. When Charlotte was five years old, her brother Ethan was born. Around this time, Dan also started a new job and Dan’s grandfather died. Ethan was a relatively easy baby with a calm temperament and Dan’s new job brought him much satisfaction. Nevertheless, these experiences and his grandfather’s death were stressors for Dan. Dan has never coped well with stress and he found himself irritable much of the time, particularly with Charlotte. Charlotte loved her new brother very much and was fiercely protective of him, but her brother’s birth brought about changes in her relationships with her parents. Her mother, Jennifer, was busy feeding Ethan much of the time, so she had less time to spend with Charlotte. Dan took on more of the household responsibilities and he too had less special time with Charlotte. With fewer positive parent-child activities and daily arguments with her father, Charlotte began to exhibit behavioural problems at school and at home. It was difficult to get her out the door on time for lessons and school without a battle. She had problems following through on tasks and cleaning up after herself without being nagged. Charlotte also developed obsessions over things that didn’t feel right to her—her mitts, her pants—further delaying daily routines. The days were pinpointed by standoffs between Charlotte and Dan. No one was a winner. As he watched his relationship with his daughter deteriorate, Dan’s irritability turned to sadness and worry. He thought he was a “bad dad” and that Charlotte would do better with someone else as her father. Dan stopped taking care of himself, stopped exercising, and wasn’t in the mood for romance with his wife. He felt worthless, like he was all alone and didn’t matter to anyone anymore. He was stuck and didn’t know how to get out of this place.

R.E.A.L. Theory Parenting can be a source of meaning as well as interpersonal and intrapersonal self-transcendence. It can also be a challenging journey when the

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bridge to attachment security sways with a change in life’s wind. With a toolkit to potentially mitigate daily hassles and to enhance or rebuild meaningful attachment relationships, parents may feel more prepared and fulfilled with the child-rearing experience. R.E.A.L.—Rational Emotive Attachment Logotherapy—tools are designed to be holistic, targeting cognitions, emotions, relational attachment, and meaning. R.E.A.L. is a second wave Positive Psychology approach, acknowledging both pathways to growth and meaning, as well as difficulties that people experience. Integral to R.E.A.L. is family engagement in shared activities, as meaningful engagement promotes mental health and resilience to well-being concerns (Armstrong, 2016; Armstrong & Manion, 2013; Frankl, 1986). A R.E.A.L. approach is meant to foster family attachment and meaning through building antidotes to the three poisons of suffering: Disconnection, meaninglessness, and the despairs of irrational (“stinky”) thinking and behaviour. This chapter outlines a selection of R.E.A.L. tools that can be helpful for everyday parenting. Parenting Parenting that serves children well involves a style and skills that are “good enough” to meet their emotional, physical, intellectual, and spiritual or existential needs. It involves assuring a child’s health and safety, preparing children for a life as productive adults, and the transmission of values (Mahapatra & Batul, 2016). Good enough parenting to meet child needs will build meaningful, secure parent-child attachment bonds, foster relational and external opportunities for meaning, and model skills for healthy thinking and behaviour. By contrast to helpful parenting, when a child’s needs are not met, children are at greater risk for future mental illness, as well as academic, and interpersonal problems (Stewart-Brown & Schrader-McMillan, 2011). Therefore, tools that build attachment, meaning, and healthy ways of thinking and behaving, may be a key solution to holistically meet child needs. Components and Rationale of R.E.A.L. Tools Rational Emotive Theory and Practice Rational Emotive [Behaviour] Therapy (RET) is an empirically based approach developed by Albert Ellis (2004) to address thoughts that mask

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the basic experiences of joy and pain. Through addressing thinking, as well as problem-solving skills and challenging or helpful behaviours, RET strives to build positive emotions. The primary tenet of RET is that what we think leads to how we feel, and that feeling will last as long as we have certain “irrational thoughts.” In a R.E.A.L. approach, “irrational thoughts” are rephrased in a more child-friendly manner: “Stinky thoughts”. Stinky thoughts can mask the basic experience of pain or pleasure, or healthy frustration, sadness, fear and joy, and lead to problematic or persistent anger, sadness, and fear. Stinky thoughts underlying these feelings include: 1) Shoulds, 2) Musts, and 3) Awfulizing (catastrophic or spiralling) thinking. RET also teaches more helpful ways of interpreting situations, and how to effectively use humour to enhance well-being, and how to soften thoughts to more compassionate thinking. These RET skills aid in self-regulation, which in turn enable one to get along with others (Baumeister, Leith, Muraven, & Bratslavsky, 1998), including within the family system. Self-regulation is the ability to control one’s emotional states and moods to feel better, concentrate and persist on tasks, control impulses and express emotions in a socially appropriate manner, set and reach goals, and prevent self-defeating behaviours (Baumeister, et al., 1998). Self-regulation is the key to success in life (Baumeister, et al., 1998). Self-regulation is also a fundamental building block of a secure attachment (Waters et al., 2010). In RET theory, people are viewed as responsible for their own well-being, but this care for oneself also has an impact on the whole family system.

Musts Shoulds

Awefulizing

Stinky Thoughts

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Attachment-Building Theory and Practice Hallmarks of secure attachment include missing beloved persons when they are away and contentment when they return (Scheff, 2010): The young child is excited by reunion, running to give a parent a hug when he or she returns from work. Key features of attachment building include mutual attunement, empathy, and responsiveness to needs (Furnivall, 2011; Lieberman & Van Horn, 2008). Mutual attunement involves the feeling and experience of being close, heard, seen, and understood by another; of being connected and not alone (Siegel, 2007). It is the “mindful” awareness of another, stemming from shared attention, as well as authentic and effective listening and responding—both verbally and non-verbally (Siegel, 2010). When people focus attention on another and take the other’s essence into their inner world, both people are changed (Siegel, 2010). When parents and children are attuned to another, they tune into, sense, and resonate with each other’s experience: Imagine plucking the strings on one violin and another violin in the room vibrates when tuned to the same frequency (Rowan & Jacobs, 2002). Shared activities or family play provide opportunities for mutual attunement, which is central to the development or re-establishment of positive, secure attachments (Malchiodi & Crenshaw, 2014). Play is the language of children (Gil, 1994). Attachment injuries can occur through family difficulties, damaging secure relationships (Cloutier, Manion, Walker, & Johnson, 2002). However, when family members participate in creative pursuits or play, thoughts and feelings are engaged in a hands-on, multisensory manner, and attachment injuries can heal (Gil, 1994; Lowenstein & Sprunk, 2010). Empathy involves understanding another person as if in their shoes, but while still tuned into the ways in which their experience may be different than one’s own (Rogers, 1980). It is also described as sensitivity to the “felt meanings which flow in the other person” (Rogers, 1980, p. 142). Through a non-judgmental, genuine stance, it involves asking questions to gain a true understanding of another’s perspective or problem, or an awareness of body language, and reflecting back what one is seeing or hearing. Empathy gives words to recognized feelings. Strategies to develop perspective taking, social problem-solving, and the ability to understand how two people might feel differently in the same situation can enhance empathy (Schonert-Reichl et al., 2015). In

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Emotionally-Focused Education, an attachment-based practice, sciencebased communication skills to create meaningful connections with others is critical (Johnson, 2016). Shared, creative play activities also help to build connection among family members (Malchiodi & Crenshaw, 2014). Play is the language of children and engaging them in activities can lead to a deeper connection with one another and the reinforcement of secure bonds (Malchiodi & Crenshaw, 2014). Responsiveness to needs involves parents understanding and addressing children’s needs in a timely, affectionate manner (Dewar, 2014; Stephens, 2007). More specifically, responsiveness entails noticing a child’s distress (e.g., fear, anger, sadness, frustration) and taking steps to offer comfort, responding appropriately for the presenting circumstance and particular child’s need, setting boundaries, accessibility, as well as providing consistent and predicable responses (Dewar, 2014; Stephens, 2007). Responsiveness is also a skill that enhances a child’s self-regulation (Dewar, 2014). Together, responsive empathic attunement nurtures secure attachment.

Secure Attachment

Attunement

Empathy

Responsivness

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Logotherapy Theory and Practice Logotherapy is a primary complement of RET (Hutchinson & Chapman, 2006). Although “attitudinal change” is a component of Logotherapy, it is fairly unclear in the literature: A grafted Logotherapy and RET approach provides a more replicable means of addressing problematic thinking. Behavioural change is a component of RET, but it does not tap into spiritual, meaning-based, or existential elements that are addressed through Logotherapy. Attachment theory also grafts well onto Logotherapy, as one “pathway to meaning” in Logotherapy involves forming secure relationships with others. Logotherapy is a meaning-based theory developed by Viktor Frankl, an Austrian psychiatrist. It was conceptualized initially as an approach for suicidal adolescents and refined based on Frankl’s concentration camp experiences. Central to Logotherapy are the notions that people have freedom to make choices under any circumstance and that, with choice, comes responsibility (Frankl, 1986). Another key tenet is that life has meaning under all circumstances and that each person must discover the meaning potential of each situation (Frankl, 1986). Logotherapy tools encourage the inner spiritual resources of creativity, hope, the capacity for choice, and the making of responsible decisions in order to live a meaningful life (Frankl, 1986; Lukas 1986). Logotherapy enhances mental health, as well as self-reported meaning and purpose in randomized control trials (Robatmili et al., 2014). A self-reported meaningful life for children includes the belief that one has influence over some things that happen in life, self-esteem, openness to new experiences, and hope for the future (Erikson, 1964; Markstrom & Kalmanir, 2001; Search Institute, 2009; VanderVen, 2008). For parents and children, the goal of a Logotherapy approach is to help families uncover, discover, and make use of meaning opportunities in everyday family life (Lantz & Harper, 1992a). Children are generally able to experience fewer impediments in finding meaning than adults (Lantz, 1982). Pathways to meaning include: 1) Doing a deed for others or creating a work (e.g., creating something for others; personally valued work; volunteering), 2) By experiencing something (e.g., engagement in valued personal or shared activities; experiencing nature), 3) Encountering someone (secure relationships with others), and 4) Choosing our attitudes (thought-changing). The most primary and powerful of these meaning pathways, as well as the most sustainable, is secure attachment with others. Although

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Encountering Someone: Secure Attachment

Experiencing Something (Activity, Nature)

Pathways to Meaning

Making a Contribution (Creating, Doing a Deed)

Attitudinal Change engagement in valued activities or work is helpful in the enhancement of mental health and reduction of suicidal thoughts (Armstrong & Manion, 2013), effect sizes are small. By contrast, functional Magnetic Reasonance Imaging [fMRI] research has yielded findings to suggest that creating securely attached connections with others has a large physiological impact, positively altering the brains representation of threat cues (Johnson et al., 2013). Losing meaningful connections with others is so risky that individuals whose partner passes away have a 66% greater likelihood of death in the three months following the loss (Moon et al., 2013). Given the critical importance of meaning derived from attachment security, the R.E.A.L. framework singles out this pathway to meaning by including attachment theory in addition to Logotherapy. Tools to uncover meaning in Logotherapy include dereflection, paradoxical intention, and Socratic dialogue. Dereflection involves directing one’s attention away from a problem toward something engaging or valued. Dereflection is not meant to be “avoidance” as avoidance often enhances problematic symptoms. Rather, it involves using a helpful tool or activity to step back from an emotionally overwhelming “cliff edge”

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to have the strength to face the important issue or thought pattern head on. Dereflection is meant to help people emotionally de-escalate so that they are able to think clearly in order to address unhelpful thinking, diffuse or problem solve a difficult situation, or to connect with an experience that may be perceived as meaningful. Paradoxical intention is the opposite of avoidance: Approaching a difficult or feared situation directly, but using a deliberate attempt to evoke humour. In parenting, Socratic dialogue involves asking open-ended questions without an agenda other than inquiry. The tone is respectful, interested, and gentle, and involves safe challenging that can lead to mutual growth. Through these Logotherapy tools to uncover meaning potentials, as well as the pathways to meaning, parents and children can gain a sense of control, enhanced self-esteem, an awareness and openness to new possible experiences, and hope for the future (Erikson, 1964; Markstrom & Kalmanir, 2001; Search Institute, 2009; VanderVen, 2008). Overall, the combination of Rational-Emotive, Attachment, and Logotherapy tools are designed to be antidotes to the poisons of family suffering. The goals are to move parents and children from 1) Disconnection to (re)attachment; 2) Meaninglessness to fostering meaning by engaging families in activities that enhance creativity, experiencing, attitudinal change, and giving; and 3) “Stinky” thoughts and behaviour to healthy ways of thinking and acting that do not cloud the experience of pain, pleasure, and meaning. R.E.A.L. Toolkit Disconnection to Meaningful (Re)Attachment Mutual attunement. As noted, problematic interactions are generally a reflection of person’s fight for secure attachment or a sense of control in a less controllable situation. When fighting for security, in response to the threat of rejection by parents, peers, teachers, or another emotionally difficult situation, children tend to present with one of four “survival stances” (Satir, Banmen, Gerber, & Gomori, 1991). In a survival stance, children generally focus on none, one, or two of the following, while neglecting the rest: Needs of the self, needs of the other, or what is appropriate to the context (Satir, et al., 1991). Satir’s survival stances include: 1) Placator (focus on other and context, ignore self): Appease others to gain acceptance; 2) Blamer (focus on self and context, ignore

R.E.A.L. TOOLS FOR EVERYDAY PARENTING

Meaninglessness Disconnection

Stinky thoughts & non-meaningoriented behaviour

Poisons of Family Suffering

Meaning Attachment

Healthy thinking & behaviour

Antidotes to Family Suffering

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other): Fight for rights to get what he or she wants; 3) Superreasonable (focus on context, ignore self and other): Always follow rules of context, regardless of what self or others want in order to maintain stability; 4) Irrelevant (ignore self, other, and context): Use humour, change subject, be a bit “off the wall” to be just enough of an entertainer or distractor to gain approval. In the long term, these survival stances are not beneficial, as they are not balanced (Satir, et al., 1991). These stances also pull particular responses from adults that can perpetuate the problems instead of building the needed attachment security. To build meaningful attachment security and move away from problematic patterns of interacting, there are a number of different options for developing mutual attunement. Certain shared games can lead to the development of mutual attunement, if they involve having to attend to another person. Building a brief, shared game into routines a few times per week with younger children can be helpful. For example, music therapy literature suggests that family music-making can be the language of non-verbal mutual attunement and be a strong builder of attachment (Jacobsen, McKinney, & Holck, 2014). Family members might form a “kitchen symphony,” trying to drum together on the pots and pans to the same rhythm. Families with older children may simply sing along with a shared enjoyable song on the radio. A different type of game might involve a child putting a beanbag or beanie toy on their head and dropping it into a parent’s hands whenever the parent blinks. Another example activity might be that families could create an obstacle course, blindfold one person and direct them through the obstacle course with words alone. Similarly, families could play a “move an object” attending game: One person leaves the room, while the others decide what object they want the person to move (e.g. they might want the person to move the apple from the counter to the table). When the person returns, the family members hum a familiar tune (e.g., ABC, Twinkle Twinkle) at a medium volume, getting louder as the person moves closer to the object, quieter as the person moves farther away. When the object is discovered, they hum louder as the person moves the object close to the desired location and quieter as the person moves the object farther away from the final location. As play is the language of children (Gil, 1994), these types of activities can engage mutual attunement at a level familiar to children. Engaging with children at the level of play acknowledges the developmental levels of all family members and allows for even young children to actively participate (Armstrong & Simpson, 2002). For children of all ages, engaging together in a family board game, activities that are important or interesting to the children, or time in

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nature all can enhance meaning in the family as well as mutual attunement. Engaging together in shared family meals, rich discussions in the car, and other regular meaningful activities can also enhance attunement. Further, through creating a prepared environment for mutual attunement, establishing family routines, sharing meaningful activities and increasing one-on-one time with each child can help to strengthen attachment between parents and children (Clark, 2013). This ultimately reinforces the most important parental message of enduring, unconditional love for their children (Clark, 2013). On a daily basis, families can make time to talk about each person’s day, having special parent-child and parent-parent time (e.g., at bed time or meal time or another appropriate time) for talking and listening. Looking at the person, showing genuine interest, and putting the electronics down, tells the other person: “I am listening to you. I am interested in what you have to say. You can count on me. I am there for you.” This behaviour opens up the relationship for mutual attunement. Moreover, whenever parents are delivering an instruction to children or asking for something that they need from a partner, they should make sure that attention is fully engaged before asking: Look the other person in the eye and make the gentle request. Sometimes one could also ask for the other to express their needs (i.e., “How can I help?”) if the other’s needs may be unclear. For example, with Charlotte, Dan could say to her, while looking her in the eye, “In ten minutes, we’ll be leaving the house to go to church. So, in five minutes, I’d like you to have your drawing finished up so that you’ll have time to get on your coat and boots. Is there anything that I could do to help you with that?” It is, however, more powerful if one can read another’s subtle non-verbal and verbal cues to appropriately deduce needs, rather than having to ask: Ask if stuck and needs are unclear.

LOOK for verbal & non-verbal need cues ASK when uncertain of another's need DON'T be a "mind reader"

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Part of building mutual attunement may involve creating a prepared environment for the development of emotional literacy: Emotion is the language of attachment. While reading together or watching programs, pausing to raise questions about the characters, such as: I wonder what he might be feeling right now? Why do you think he might be feeling sad? How would you feel in this situation? Why do you think you would feel that way? Could someone else feel different than that in this situation? Why might they feel different? In teaching the child to attune to other people’s feelings in difficult situations, parents may ask the child, “What do you think your brother is feeling right now, after you took the toy from him?” Such questions can help a child to explore their own behaviour, other’s feelings, and also learn to self-reflect, which are important skills for self-regulation and potentially breaking out of “survival stances.” Regarding the case, Charlotte is a “blamer” under Satir’s model, fighting for what she wants: Secure attachment and finding her place in the new family arrangement. Charlotte and her parents implemented family game night, discussed characters’ feelings while readings stories, and each parent gets “special time” with Charlotte each day to talk together and participate in a brief shared activity. Dan and Charlotte went on daddy-daughter date days to local museums.

Responsiveness. Regarding parents or caregivers, asking for help from one’s partner or simply offering help in difficult situations says, “I understand that you have needs and I am here to help meet your needs.” Parents or caregivers can ask one another, “How can I help?” or simply respond to the apparent need without having to ask. To gain an understanding of the other’s concern, one can think of emotions like “alarm bells.” If a person is sad, angry, or scared, or they see that another family member is exhibiting sad, angry, or scared behaviour, this means that they have a need—their alarm is saying that life is calling for a response. A partner could use empathic questioning in response to the emotional alarm bells and say something like, “I’ve noticed that you’ve been angry lately and you also seem sad. What’s going on?...Could you tell me more about that?....That must be really hard.” In Logotherapy, responsiveness means being attuned to the meaning in each moment as well as overall life meanings and acting to serve this (Fabry, 1998). Relationships with others are one pathway to meaning and there are simple ways to be attuned to the potential for enhanced meaning in each moment. By actively, non-judgementally listening to another special person, truly understanding their need in the moment, and acting to meet that person’s need, meaning is enhanced.

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With regard to the case, when calm, Jennifer could take time to understand Dan’s concerns through empathic dialogue to find out how she could be of help. Moreover, without having to problem solve, Jennifer could observe that moments of transition for Charlotte are also moments that are challenging for Dan. She could step in and help direct Charlotte to the next activity, taking the pressure off Dan. Sometimes having a different parent step in may yield a different response from the child. Further, if Jennifer has been particularly focused on Ethan lately, then responding during difficult times for Charlotte may also help Charlotte to feel more secure in relation to both parents.

Meaninglessness to Family Meaning through Healthy Thinking and Actions When families sense the basic yearning “I want us to be happy,” they are focused on an unattainable goal. Logotherapists are aware that pursuing happiness means that happiness will be elusive (Barnes, 1995). Instead, if families intentionally do something meaningful or perceive meaning in everyday moments, happiness is a bi-product (Barnes, 1995). A lack of meaningful awareness is a dark cloud that shadows the family, while meaning is hope in the midst of darkness. With no hope, there is no meaning. By contrast, hope is optimistic and leads to the desire to work on healthy interaction. Healthy interaction is a positive feedback cycle that in turn increases awareness of meaning in the family and reinforces hope. In securely attached love, there is a generative closeness for mutual self-transcendence (Frankl, 1986). In self-transcendence, one feels needed, appreciated, unique, and valued. It is a basic human need to feel needed, appreciated, unique, and valued (Crumbaugh, 1996). Humans cry out for meaning in basic connection with other beings. When meaning is clouded, if connection within a family loses its security, families are tossed like boats in a wild ocean without a compass. By contrast, meaning is a compass that guides the boat safely back to shore. Sometimes it just takes small experiential changes to reveal the meaning compass: Meaningful activities, humour, behavioural coping strategies, paradoxical intention, or helpful thinking may lead to such a change. Meaningful activities. Self-care is important for individuals in the family, as are shared family activities. Meaningful engagement can be defined as an activity which promotes success, challenge, would be hard to give up, is believed to be important, and is experienced as fun (Armstrong & Manion, 2015). Personally meaningful engagement is

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thought to be essential for health and well-being (Caldwell & Baldwin 2003; Kleiber, 1999). Meaningful engagement is also related to personal growth and purpose in life (Nakamura, 2001; Nakamura & Csikszentimihalyi, 2002). Anything that provides meaning or purpose is related to decreases in the risk for suicide (Frankl, 1986). Concretely, in Logotherapy, meaningful engagement involves: 1) Doing a deed for others or creating a work (e.g., creating something for others; personally valued work or activities; volunteering; baking together for the family). 2) Experiencing something (e.g., engagement in valued personal or shared activities; experiencing nature) For individual members of the family, daily brief activities, particularly those that may involve exercise or an experience in nature may be beneficial. In the case, for self-care, Dan added some brief daily physical exercise (a 5-10 minute walk alone or with the baby). He also set aside some weekly time for a meaningful activity that he could look forward to (swimming two nights per week) and wrote this on the calendar so that he could perceive it as important.

Humour/Paradoxical Intention. Channelling one’s inner “goofball” can have a way of defusing even the most infuriating situations. However, as Satir et al. (1991) noted, the use of humour solely to change the subject, or to gain approval, is not helpful in the long term. Instead, humour that builds meaningful connection can be thought of differently. Specifically, humour, defined in the context of meaning, is a “positive state of mind” (Kwan, 2002). Positive humour or appropriate laughter transcend barriers and build spiritual connection between people (Kwan, 2002). Humour taps into the spiritual connection between people (Kwan, 2002). More specifically, the act of laughing transcends attachment barriers and gives people a common focal point upon which to relate. Every being, child or adult, has the capacity for humour and can use laughter, giggles, or subtle smiles to break down emotional walls and reach out to others (Kwan, 2002). Humour can be accessed through paradoxical intention or exaggeration. Specifically, in both Logotherapy and RET, exaggerating everyday (non-crisis) events to the point of being ridiculous can be humourous and can diffuse difficult situations. When one’s emotional “frustration” alarm bells go off, there is a choice: One could choose to show anger or choose a different, perhaps opposite response. When distressed, people often act in ways that push others away. Doing the opposite:

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Approaching, rather than distancing oneself or “giving space” can meet the need for meaningful attachment, thereby reducing distressed. Often what people most need when they push others away through the actions is a sense of security and responsiveness to needs. For the case, when Dan becomes frustrated that Charlotte cannot get out the door because her mittens do not feel right, he could put his wife’s too-small-for-him gloves on inside out and say “these don’t feel right!” This might generate laughter from Charlotte. Then, he could help her if something is wrong with her own mittens (e.g., perhaps the liner comes out and she just needs help fixing that before her mittens go on right). Diffusing the situation with humour would lead to a quicker resolution to the problem. By contrast, parental yelling tends to delay families further because it usually leads to a child shutting down or melting down.

In Kwan’s model, good humour is a term broader than laughter: It is the generation of a positive emotional state. For example, in a crisis, if sitting with a distressed friend, sometimes simply listening or sitting with them in peaceful silence can pull a person from negative focus to re-focusing on the positive, the meaningful. Laughter or silliness in such a situation may be alienating, rather than creating a generative, supportive, meaningful connection. By contrast, in everyday life situations, letting one’s inner child run free through putting a humourous spin on events can diffuse anger, sadness, and fear. Behavioural coping strategies. When people are sad, angry, or scared, breathing is shallow. In these moments, simply taking a long breath in through the nose and letting it out through the mouth for a longer amount of time can begin the process of relaxation, or stepping back from the emotional “cliff edge.” The self-care, meaningful activities, and exercise described previously can also be good behavioural coping strategies for calming down and refocusing on the meaning in the moment. To attend to the meaning in the moment, attending to the room with one’s five senses can be helpful. For example, if on a walk, meaningfully attention to the environment might look like: Noticing the sound of the leaves in the trees, returning attention to breathing, noticing the hardness of the ground under foot, returning attention to breathing, noticing the taste of the gum in one’s mouth, returning attention to breathing, noticing the warmth of the air… and so on. This also can be done in one’s own house when attending to a conversation, when meaningfully observing one’s child, or when enjoying a meal, a bath, or a good piece of music. Attending deeply, with as many senses as possible, can draw the meaning from a situation, highlighting it like a lighthouse beacon,

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slowing down the moment to capture the experience in a fast-paced world. If there are times of day that tend to be more stressful than others (e.g., getting ready before leaving in the morning), deep diaphragmatic breathing, brief exercise, or noticing with the five senses could be used in anticipation of, and following, the daily stressful situations. Regarding behavioural coping strategies, rewarding children, such as giving them “positive points” can act as a bridge to meaningful attachment. More specifically, noticing the positives, rewarding them with praise or a point system, and ignoring the negatives—when possible— can lead to initial changes. To children, any attention is still attention. Therefore, if positive behaviours are receiving attention, then these behaviours are going to increase. If negative behaviours are ignored, with the exception of harmful behaviour that cannot be ignored, then negative behaviours will decrease. Once positive behaviour begins to increase, it may be easier for parents to address the child’s underlying need to orient toward a meaningful attachment. More specifically, just as an infant’s cries or “food face” signal a particular need: Feed me, reduce my overstimulation, comfort me, family members also display their needs through non-verbal and verbal cues. Although a child may act in ways that match their age when calm, when distressed, they may act in ways that show that they need something (e.g., independently getting dressed vs. refusal to comply as an attachment-seeking / help-seeking behaviour). Difficulties with compliance or oppositional behaviours are generally attachment-seeking behaviours that arise when a child has a need. If parents respond to that need, particularly without having to ask the child what he or she needs, then the child will feel like the parent is responsive. Similarly, reading a partner’s verbal and non-verbal cues, and meeting the person’s needs, builds security. When there is security, meaning is found in attachment. In the case, Charlotte’s attachment needs seem to be the greatest during predictable moments. In the R.E.A.L. model, these moments of difficulty are Charlotte’s expression of attachment need, her “alarm bells” calling for a helpful, secure, meaningful response from her parents.

Stinky Thoughts and Behaviour to Helpful Thinking and Acting Monitoring. The good news is that the majority of problematic behaviours and negative interactions are predictable! The first step in understanding the pattern is to simply monitor the situation: A family is like a dragon boat crew; notice the rhythm of the strokes, how everyone is

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functioning together to move the boat in a smooth or rocky direction. Under what situations do problems occur? Is there a trigger? What was said? What were the reactions of the persons involved? What feelings emerged? What are their needs? How are they functioning well? A securely attached family will smoothly traverse the waters, coming upon brief out of sync moments when attachment needs arise. When the rhythm of the dragon boat crew is understood, we can begin to change the strokes of the whole crew to a new, healthy pattern of interaction: A pattern fostering or maintaining meaningful, secure attachment. Situations in which problems occurred

Reactions of one person

Reactions of other person (or people)

Feelings in the room

Statements or other triggers that preceded the reactions

For example, in the case, getting Charlotte out the door for school, lessons, and other family activities was challenging. Similarly, transition times at school were also particularly difficult. For these issues, their monitoring began as follows: Situations in which problems occurred

Reactions of one person

Going out the door to church

Charlotte refused to put down her drawing and get her snowsuit on. Further pressure led to a tantrum (yelling).

Putting away work at school to get ready for lunch

Charlotte keeps working when all of the other children pack up their work and get in line to retrieve their lunch bags. Further prompts lead to Charlotte refusing to leave her incomplete work, yelling, or running around the classroom if her work is taken from her.

Reactions of other person (or people)

Feelings in the room

Statements or other triggers that preceded the reactions Dan yelled, called Charlotte: Anger, Statement: “Time Charlotte a bad sadness, insecurity to go to church, listener, carried her Dan: Anger, Charlotte. Get your to the door, and put frustration, stress, snowsuit on. We’re her snowsuit on insecurity ready to go.” Trigger: Transition from incomplete drawing to leaving the house Kids tease Charlotte Charlotte: Anger, Statement: “Time for her behaviour. sadness, insecurity to clean up for When faced with Teacher: Frustrated, lunch.” refusal, teacher takes angry, exasperated Trigger: Transition Charlotte’s work from incomplete and tells her to get work to lunch in line with the other students.

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From this example, one pattern that emerged is Charlotte’s difficulty with transitions. Further problematic behaviours and interactions with Charlotte, as well as interactions between Jennifer and Dan, or with Ethan, were also monitored. These difficulties can be seen as a cry for secure attachment or as a symptom of an out of sync dragon boat. An out of sync boat is never the “fault” of one person, as it takes the whole crew to mutually read each other’s cues, connect with one another, and paddle in sync. Attachment theory and Logotherapy together indicate that most problematic behaviours in families stem from frustrated meaning and insecurity with regard to the members’ ability to feel connected to, and responded to, by one another. Moreover, if a child tends to be particularly emotionally sensitive, then when they are feeling insecure— as Charlotte has been since the birth of her brother—they are more likely to need to feel a sense of control (e.g., such as when Charlotte was needing her activities to be completed before she could move on). Unhelpful behaviours can be replaced with more helpful behaviour and with the response of a caring, supportive parent who is in tune with the child’s needs (e.g., Charlotte’s need is to see that she still has a secure place in the family after the birth of her brother). Parental attitudes. Any situation can be perceived in multiple ways. In fact, taking a positive rather than negative attitude toward difficult situations can lead to positive feelings and also generate helpful problem-solving, rather than a sense of being stuck or overwhelmed. Using one’s attitude to pick up the positive assets from the ashes can lead to growth in a Phoenix-like fashion. One helpful way to do this is to think of one’s life like a movie. During down time, making a mental highlight reel, thinking of a stellar or good moment in the day can lead to a sense of gratitude. Following brief calm down skills, noted previously, highlight reels can be “taken off the shelf” when feeling frustrated. Moreover, to enhance positive thinking, taking negative beliefs and looking at evidence for and against these beliefs can soften stinky thoughts. In the case, Dan reported a number of negative thoughts about himself (“bad dad”, “Charlotte would do better with someone else as her father”). During quiet time, Dan could explore the evidence for and against these thoughts (are you really a “bad dad”? What would Jennifer say about you as a dad? What do you think Charlotte would say? Have you tried asking them? What would it be like asking them that? Such an exploration, particularly through dialogue with Jennifer, led him to adopt a more balanced perspective.

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Affection before Correction and Connection. Think of mood like a traffic light: Moods fall under the categories of “green” (calm, peaceful, relaxed, neutral), “yellow” (a bit excited, agitated, frustrated), “red” (angry, highly distressed, expressively sad). It is challenging to address situations when children or a partner are in yellow or red moods, as information is not processed as well, given the emotional arousal. However, it is still possible to connect with another person who is feeling strong emotions. When a child or partner is in “yellow” or “red” mood, to address a concern in the moment, comment on the feeling—label it (“you’re feeling really sad that your brother took apart your puzzle”) and acknowledge the difficulty so that the person feels understood (“it’s hard when you’ve put so much work into something only to have it messed up”). This shows attunement and affection. Emotional language also helps build longer-term self-regulation skills. Even in frustrating situations, first affectionately acknowledge the emotion before correcting the behaviour. Then, correct the behaviour by stating your concern (“I understand that you’re frustrated, but it’s not okay to hit”). Follow this with an offer to help, which can lead the person to feel supported and thereby enhance connection (“Would you like me to help you put it back together?”). While providing help or support to the child or partner, his or her mood will likely calm down to “green.” It is at the time that problem-solving for such situations in the future may be helpful (“Next time you’re frustrated with your brother, instead of hitting him, is there something else that you could do instead?”). Meaning-Building Problem Solving. A large body of research suggests that child enhancement of emotional literacy through parental “emotion coaching” leads to improved social skills, academic performance, as well as physical and mental health (Dolhanty & Lafrance, 2016). According to Emotion-Focused Family Therapy (EFFT), emotion coaching involves: 1) Attending to an emotional experience: Using empathy (“Something seems to be up”), 2) Labeling the emotion (“You seem worried”), 3) Validating the emotion (“I understand that you’re feeling worried. It’s hard to go to school when kids might be mean”), 4) Meeting the child’s emotional need (Sadness: Soothe, give a hug; Anger: Help set and defend the child’s boundaries; Fear: Protect from real danger; Anxiety: Help the child to tackle the anxiety-provoking situation with love and support), 5) Fix it / Problem Solve: When family members are calm and far away from the “cliff edge,” effective problem solving between family members begins with empathy. Similar to a Collaborative Problem-Solving approach (Green & Ablon,

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2006) or emotion coaching (e.g., Dolhanty & Lafrance, 2016; Gottman), but for communication between any family dyad (e.g., couple, parent-child), meaning-based empathic understanding in the R.E.A.L. model involves a brief discussion of observations of a problem that is occurring, label the feeling, and follow by gentle questioning (“I’ve noticed that you haven’t been wanting to go to school lately. You seem sad or worried. Is there something going on?”). To truly understand the concern and what it means for the person, the next step is to engage in further gentle probing questions (“Could you tell me more about that?” “I’m not quite clear. Could you help me understand…”; “can I take a guess?”). Reflecting back what one is hearing (“It sounds like you’re saying that kids are being mean to you at school, is that right?”) and appropriately guessing when the child may be having trouble reflecting can also be helpful (“Sometimes when children have tummy aches a lot, they’re worried about something. Are you worried about going to school because of the mean kids?”). This open, respectful approach, to gain a meaningful understanding of the problem, is Socratic Dialogue. It also builds a meaningful, secure connection because people feel heard, cared about, and understood. Step-by-step, meaning-building problem solving involves: Step 1 – Approaching the issue: Approach your partner or child when you are both calm (“green” mood). It is challenging to solve problems with longer-term solutions if people are in a “yellow” (caution) or “red” (completely frustrated, sad, afraid) mood. Try to understand the problem from the other person’s perspective without using blaming language (use safe “I” language, not “you” language): “I’ve noticed that X has been happening lately. What’s going on?” (Other phrases may include: “Could you help me understand that?”). Step 2 – Empathic reflection: When the person replies, reflect back your understanding: “If I understand correctly….” Or “What you’re saying is…”. Try to stay as close as possible to the other person’s words (e.g., “I forget to put my cups away when I’m busy answering emails on my phone.” Reflection: “So what you’re saying is that it’s easy to forget to tidy up when you’re on your phone.”). Step 3 – Further clarification: If the problem is still unclear, continue to ask probing questions: “I’m not quite understanding…” or “Could you help me to understand what is tricky about this for you?” “Some people find this hard because of X. Is that what’s hard for you?” “Let’s play a guessing game. Let me know if I’m hot or cold. Is this what’s tricky?” “Can I take a guess?”

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Step 4 – Recognizing feelings & validating them: Ask questions, such as “What was that like for you?” “How did you feel about that?” Or make feeling statements, “You seem really frustrated when this happens.” Validation: “That would be really frustrating.” Addressing feelings touches the person in a meaningful way, at the emotional level, which can lead to greater connection and longer-term impact. Going beyond “content” into feelings also helps people feel more heard and understood. Step 5 – Define the problem & check your understanding: Once you have a clear understanding of the problem, state back your understanding to the other person: “If I understand correctly, the problem is…” “It sounds like the problem is…” Step 6 – Express your worry or frustration using “I” language: “My worry is that…” “It bothers me because…” (e.g., “It bothers me when I come home to cups and dishes out because it makes me feel overwhelmed with responsibilities and I can’t relax.”). Step 7 – Brainstorm potential solutions to the problem: For this step, it is important to be accepting and non-judgmental of all expressed ideas. Invite the other person to generate a possible solution first. “Can you think of something that we could try…” “What could we do about this… hmmm….” Do not shut down or judge any ideas, just put all ideas on the table and evaluate them as a team. Step 8 – Open the door for further discussion: Agree on a possible solution to try out next time the issue arises. Invite continued discussion if the solution does not end up solving the problem (e.g., “Let’s try your idea to put a reminder notification on your phone to put dishes away about 15 minutes before I normally get home. If this doesn’t work, then we can talk about this again and try something else.”) Step 9 – End with appreciation, gratitude to highlight the value of the meaningful discussion: “Thank you for taking the time to talk to me about this.” “I appreciated…” “This was helpful. Thank you.” When a family member has a clear understanding of another’s concern (spouse or child’s concern), they can state the concern and then express their own concerns (“If I understand correctly, the problem is that kids are being mean to you, so you’d like to stay home from school today. Is that right?” [yes] “My concern is that, if you don’t go to school, then you might become more and more afraid to go.”). The family member should use “I” language instead of blaming language. Together, family members can generate solutions to the stated concerns, without judgement. Solutions should match the child’s emotional

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need. For example, as noted above, if the child is afraid of children who are being mean, then a child will feel supported if parents take steps to protect the child from danger. When generating solutions, every idea is valid. When a solution is agreed upon, family members agree to try it out and then revisit the problem if the solution does not work. Problematic behaviours are predictable and meaning-building problem solving may be particularly helpful for behaviours that are recurrent. Regarding the case, Dan had the following conversation with Charlotte involving meaning-building problem solving and dereflection: What is the problem? Dan: I’ve noticed that it’s hard for you to stop doing things before they feel done or feel right to you…. like when you’re drawing something and it doesn’t look quite right, so you throw your page on the floor have to draw it all over again. Could you help me to understand a little bit about this? Charlotte: It’s because I don’t like it. Dan: You don’t like it…. Is it because it’s not perfect? Charlotte: Yes. Dan: You don’t like when it’s not perfect. What is it that feels good about things being perfect? Charlotte: It makes me feel like I’m good when it’s perfect. I’m bad when it’s not perfect. Dan: So, when it’s perfect, you feel good about yourself. When it’s not perfect, you feel bad. Charlotte: Ya. Dan: So, if I’m hearing you correctly, it sounds like you don’t feel very good about yourself sometimes and that you need things to be perfect so things feel better. Is that right? Charlotte: If I was a better person, then people would like me. Dan: You think that people don’t like you. Charlotte: Kids are mean to me and don’t want to play with me. They say mean stuff every day. Dan: It’s hard when kids are mean. What sort of mean things have they been saying? Charlotte: Jeffrey and Sarin say that they’ll hit me or kick me if I come near them. Dan: That’s so sad. I would feel sad if kids had done that to me. (Charlotte nods). Is there anything else that’s been hard for you? Charlotte: Since Ethan has been born, you’ve been mad at me too. Do you love me, Daddy? Dan: I love you every minute of every day. I’m sorry that I have been more frustrated lately. You don’t deserve that. The Problem & Potential Solutions: Dan: It seems like you haven’t been feeling very good about yourself lately because of the mean kids and because of our arguments at

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home. It’s not okay that you’ve been treated this way. You’ve been trying to feel better about yourself by doing things perfectly or by finishing things that you start. My concern is that you can get really stuck trying to do things and maybe end up feeling worse about yourself. Is there anything that you think we could do to help you feel better? Charlotte: I could tell the teacher when someone says something mean. Dan: That’s a good idea. Let’s try that. I was wondering what you would think about Daddy talking to the teacher too about these kids. What they are doing is bullying. Charlotte: I’d like that. Dan: Daddy shouldn’t have got mad at you when you’ve felt like you’ve had to finish things or get things to feel right. Is there anything I could do to help when you get stuck? Charlotte: I like it when you pick me up and spin me around. Dan: We could try that. I was thinking that I could let you know when we have to go somewhere or do something a few minutes ahead of time, but if you get stuck, then I could try spinning you around. Does that sound good? Charlotte: Sounds good. Dan: Alright. Let’s try these things. If something still isn’t going well after we try these things, then we can talk about some other things that we could try. I’m glad we had the chance to do talk about this. Thank you, Charlotte. Charlotte and Dan came up with a solution that they can work on together, creating opportunities for meaningful connection: Dan is her supportive ally, rallying for her well-being in the face of difficulty.

Dereflection: A Behavioural Strategy to Enhance Meaningful Attachment. When problematic situations or triggers are predictable, strategies can be put in place to minimize the chance of the situation escalating. When people experience intense sadness, fear, or anger, it is like their toes are at the edge of a cliff: They have difficulty thinking clearly, problem solving, and responding in a helpful manner. Creating a meaningful connection with children, especially in everyday challenging moments, can be stressful, with some moments leading to feelings of anger or irritability. Anger and irritability can sometimes “rock the boat” of meaningful attachment. Dereflection, or brief calm down, activities can help people step back from the cliff edge to slow down and make more helpful choices in their interactions. Family members can work together generate a list of 5 to 10 very brief “feel good” activities for each person. These brief 30 second to 2 minute activities can be used to prevent spiralling thoughts, behaviours, and

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emotions. These activities are useful in moments when triggers normally lead to negative reactions. Changing one person’s response, even briefly, can change the entire flow of the boat, as others may respond differently: They may respond in a way to match the changed response, if they are attuned to one another. The goal of a brief dereflection activity is to shift attention from the problem to something briefly meaningful, and then return attention to the situation in a calmer manner. As a family, each member would support and encourage the others to use these activities in moments that could lead to problems, or moments of disconnection from meaningful attachment. Further, before stepping out of the situation to carry out the dereflection activity, it may be helpful to “sound the alarm.” Letting family members know that you are close to the cliff edge and feeling irritated, sad, or afraid, can help others to recognize the problem in the moment and change their behaviour. It also creates a safe, meaningful attachment space, so that family members know that a parent or child is going to do their dereflection activity, will be back in a short time, and is not ignoring or disengaging from the other person. For the case of Dan and his family, Dan and Charlotte generated the following dereflection lists. They agreed to use these activities during transition times for Charlotte (e.g., leaving the house or unfinished activities). When calm, instead of getting irritated, Dan may choose to helpful Charlotte get ready, as this may be what she is needing right now, even though she had previously been independent. Charlotte may use dereflection to self-regulate and respond better to those reaching to connect with her. 1) 2) 3) 4) 5) 6)

Dan’s Derefection Activities Text messaging my friend Ben Mental math (1+1 = 2, 2+2 = 4, 4+4 = 8, 8+8 = 16…) Reciting the alphabet song backwards in my head Chew gum, noticing it with my 5 senses (taste, smell, sound, feel, the touch on my tongue) Slow, deep breaths, gently guiding wandering thoughts back to my breath Slowly counting to 10 and then back down to 1

Charlotte’s Dereflection Activities 1) Thinking about a fun thing to look forward to in the next place I have to be 2) 5 jumping jacks (only at home) 3) Hum a song quietly (Happy Birthday to You) 4) Squishing a ball of clay and rolling it again 5) Taking a few big breaths, pretending that I am blowing bubbles with a long breath out (or gently blowing out birthday candles)

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7) Close my eyes and daydream 6) Watching the sand flow to the about a walk in the woods, bottom of a minute timer or visualizing it with as much detail watching glitter settle to the as possible (5 senses) bottom in my “calm jar” (jar 8) Give myself a brief hand massage filled with water, glue, and glitter) 9) Wash my hands in cold water 7) Slowly count to 10 in my head 10) Get a drink of water and count back down to 1

Dereflection can also be used to take a pause from tense moments where people might say something regrettable and be unable to respond to their partner’s needs. To enhance responsiveness, in tense moments, partners can use “I” language and say, “I’m feeling upset at the moment. I just need to take a short time to do X (dereflection activity noted previously). This issue is important though, so I would like to talk about it again soon.” After calming down, they can return to the conversation. Just like only engaging in meaning-based problem solving when everyone is calm, discussions facilitating responsiveness are sometimes also best when calm. Conclusion Successful parenting that builds meaningful, secure attachment does not appear suddenly and instinctively. Good parenting, just like child behaviour, is learned. Even if challenging behaviour and parenting difficulties are a family’s common pattern, with helpful tools, such as R.E.A.L. tools, a new pattern conducive to meaning and attachment can be learned. With an awareness of predictable, difficult situations, calm down skills, helpful thinking, empathic listening, and problem-solving, among other tools, families can be equipped to navigate challenges and enhance meaningful connection. As seen throughout this chapter, Dan, Jennifer, and Charlotte have been working hard to develop new ways of interacting, and re-building the meaningful, secure bonds that they used to share. After using R.E.A.L. tools for several weeks, even with some remaining difficult moments, it is hard for the family to remember a bad day in the recent past. Generally, even when tired or stressed by whatever surprises life has thrown their way, the family is happy. With meaning, happiness follows. Dan has been able to control his irritability through self-care, helpful thinking, and brief calm down activities. Meaningful problem solving and humour were used to target key problematic situations, so Charlotte no

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longer worries about the feel of clothing. She also is no longer being bullied at school as her parents engaged in discussions that allowed them to be aware of the problem and connect with the school. Getting out the door is now more of a fun, rather than stressful time. As Ethan needs less one-on-one time with his mother, Jennifer and Dan share more household responsibilities, relieving Dan’s stress somewhat. Primarily, the meaningful Daddydaughter time that Dan shares with Charlotte has significantly reduced his stress, as he has positive things to look forward to. Dan had felt worthless, like he was all alone and didn’t matter to anyone anymore. He was stuck and didn’t know how to get out of this place. Now he is unstuck and working on living a meaningful life. Reflection Questions 1) What are some dereflection activities that might be helpful for you in stressful situations? 2) Imagine a recurrent tricky situation with someone from your own family. Write down the meaning-building problem solving steps and the possible dialogue you might have to address this situation. Glossary Dereflection is a Logotherapy tool that involves directing one’s attention away from a problem toward something engaging or valued. Empathy involves understanding another person as if in their shoes. Through a non-judgmental, genuine stance, it involves asking questions to gain a true understanding of another’s perspective or problem, or an awareness of body language, and reflecting back what one is seeing or hearing. Empathy gives words to recognized feelings. “Good Enough” parenting meets children’s emotion, physical, intellectual, and spiritual or existential needs. It involves assuring a child’s health and safety, preparing children for a life as productive adults, and the transmission of values. Logotherapy posits that people have freedom to make choices under any circumstance and that, with choice, comes responsibility. Another key tenet is that life has meaning under all circumstances and that each person must discover the meaning potential of each situation.

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Meaningful engagement is an activity that promotes success, challenge, would be hard to give up, is believed to be important, and is experienced as fun. Mutual attunement involves the feeling and experience of being close, heard, seen, and understood by another; of being connected and not alone. Paradoxical intention is a Logotherapy tool that is the opposite of avoidance: Approaching a difficult or feared situation directly, but using a deliberate attempt to evoke humour. Rational-Emotive Behaviour Therapy is an empirically-based approach to address unhelpful thinking and behaviour. The primary tenant is that what we think leads to how we feel. The feeling will last as long as we continue to be stuck in the thoughts that led to the feeling. R.E.A.L. is a Second Wave Positive Psychology approach grounded in Rational-Emotive, Attachment, and Logotherapy theory to foster family attachment and meaning through countering the three poisons of suffering: Disconnection, meaninglessness, and the despairs of irrational (“stinky”) thinking and behaviour. R.E.A.L. tools are aimed at building attachment, meaning, and healthy ways of thinking and behaving. Secure attachment involves missing beloved persons when they are away and contentment when they return. It is an emotional bond in which one can depend on the other person to be sensitive and responsive to needs. However, unlike with a couple relationship where there is reciprocity, in a parent-child relationship, the parent is there to meet the child’s emotional, physical, intellectual, and spiritual needs: It is not the child’s responsibility to meet the parent’s needs. Self-regulation is the ability to control one’s emotional states and moods to feel better, concentrate and persist on tasks, control impulses and express emotions in a socially appropriate manner, set and reach goals, and prevent self-defeating behaviours. Socratic dialogue involves asking open-ended questions without an agenda other than inquiry. References Armstrong, L.L. (2016). R.E.A.L. Therapy: Rational-Emotive Attachmentbased Logotherapy for Families. The Family Journal. doi: 10.1177/10664807 16628626 (print version in press)

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Armstrong, L.L., & Manion, G.I. (2015). Meaningful youth engagement as a protective factor for youth suicidal ideation. Journal of Research on Adolescence, 25, 20-27. doi: 10.1111/jora.12098 Armstrong, S.A., & Simpson, C.S. (2002). Expressive arts and family therapy: Including young children in the process. Texas Counseling Association Journal, 30, 2-9. Barnes, R.C. (1995). Logotherapy and the human spirit. Vienna: Viktor Frankl Institute of Logotherapy. Baumeister, R.F., Leith, K.P., Muraven, M., & Bratslavsky, E. (1998). Selfregulation as a key to success in life. In D. Pushkar, W. Bukowski, D. Stack, A. Schwartzman, & D. White (Eds.), Improving competence across the lifespan (pp. 117-132). New York: Plenum. Caldwell, L., & Baldwin, C. (2003). A serious look at leisure: The role of free time and recreation activities in positive youth development. In F.A. Villarruel, D.F. Perkins, L.M. Borden, & J.G. Keith (Eds.), Community youth development: Practice, policy, and research (pp. 181-200). Thousand Oaks, CA: Sage. Clark, B. (2013). Supporting the mental health of children and youth of separating parents: Canadian Paediatric Society, Mental Health and Developmental Disabilities Committee. Paediatric Child Health, 18, 373-377. Cloutier, P.F., Manion, I.G., Walker, J.G., & Johnson, S.M. (2002). Emotionally focused interventions for couples with chronically ill children: A 2-year follow-up. Journal of Marital & Family Therapy, 28, 391-398. Crumbaugh, J.C. (1996). Logotherapy Revisited as Love Therapy. The International Forum for Logotherapy, 19, 9-14. Dewar, G. (2014). The science of attachment parenting. Parenting Science. Retrieved from http://www.parentingscience.com Dolhanty, J., & Lafrance, A. (2016). Steps of Emotion Coaching. Retrieved from http://emotionfocusedfamilytherapy.org Ellis, A. (2004). Rational emotive behavior therapy: It works for me, it can work for you. New York, NY: Albert Ellis Institute. Erikson, E. H. (1964). Insight and responsibility. New York, NY: Norton. Fabry, J. (1998). The cause of meaning. In P.T.P. Wong & P.S. Fry (Eds.), The human quest for meaning: A handbook of psychological research and clinical applications (pp. 295-305). Mahwah, NJ: Erlbaum. Frankl, V. (1986). Man’s search for meaning. New York, NY: Simon & Schuster. Furnivall, J. (2011). Attachment-informed practice with looked after children and young people (IRISS Insights Vol. 10). Glasgow. Gil, E. (1994). Play in family therapy. New York, NY: Guilford Press. Green, R., & Ablon, J.S. (2006). Treating explosive kids: The collaborative problem-solving approach. New York, NY: Guilford Press. Hutchinson, G.T., & Chapman, B.P. (2005). Logotherapy-enhanced REBT: An integration of discovery and reason. Journal of Contemporary Psychotherapy, 35, 145-155. Jacobsen, S.L., McKinney, C.H., & Holck, U. (2014). Effects of dyadic music therapy intervention on parent-child interaction, parent stress, and parent-

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child relationship in families with emotionally neglected children: A randomized controlled trial. Journal of Music Therapy, 51, 310-332. doi: 10. 1093/jmt/thu028 Johnson S.M., Moser, M.B., Beckes, L., Smith A., Dalgleish, T., et al. (2013). Soothing the threatened brain: Leveraging contact comfort with emotionally focused therapy. PLOS One, 9, e105489. doi: 10.1371/journal.pone. 0105489 Kleiber, D. (1999). Leisure experience and human development: A dialectical interpretation. New York: Basic Books. Kwan, J. (2002). Almost home: Embracing the magical connection between positive humour & spirituality. Pennsylvania: Cameo. Lantz, J., & Harper, K. (1992a). Logotherapy in child guidance. International Forum for Logotherapy, 15, 111-115. Lantz, J., & Harper, K. (1992b). Stories and tales in logotherapy with urbanAppalachian families. Contemporary Family Therapy, 14, 455-466. Lantz, J. E. (1982). Meaning in family therapy. International Forum for Logotherapy, 5, 44-46. Lieberman, A.F., & Van Horn, P. (2008). Psychotherapy with infants and young children: Repairing the effects of stress and trauma on early attachment. New York: Guilford Press. Lowenstein, L., & Sprunk, T.P. (2010). Creative family therapy techniques: Play and art-based activities to assess and treat families. Retrieved from http:// www.lianalowenstein.com Lukas, E. (1986). Guilt and the question of meaning. Meaning in suffering. Berkeley, CA: Institute of Logotherapy Press. Mahapatra, S., & Batul, R. (2016). Psychosocial consequences of parenting. Journal of Humanities And Social Science, 21, 10-17. Malchiodi, C.A., & Crenshaw, D. (2014). Creative arts and play therapy with attachment problems. New York: Guilford Press. Markstrom, C.A., & Kalmanir, H.M. (2001). Linkages between the psychosocial stages of identity and intimacy and the ego strengths of fidelity and love. Identity: An International Journal of Theory and Research, 1, 179-196. Moon, J.R., Glymour, M.M., et al. (2014). Short-and long-term associations between widowhood and mortality in the United States: Longitudinal analyses. Journal of Public Health, 36, 382-389. Nakamura, J. (2001). The nature of vital engagement in adulthood. New Directions for Child & Adolescent Development, 93, 5-18. Nakamura, J., & Csikszentmihalyi, M. (2002). The concept of flow. In C.R. Snyder & S.J. Lopez (Eds.), Handbook of Positive Psychology (pp. 89-105). Oxford: Oxford University Press. Robatmili, S., Sohrabi, F., Shahrak, M.A., Talepasand, S., Nokani, M., & Hasani, M. (2004). The effect of group logotherapy on meaning in life and depression levels of Iranian students. International Journal of Advancement of Counselling, 4, 1-9. Rogers, C. (1980). A way of being. Boston: Houghton Mifflin. Rowan, J., & Jacobs, M. (2002). The therapist’s use of self. Buckingham: Open University Press.

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Satir, V., Banmen, J., Gerber, J., & Gomori, M. (1991). The Satir model: Family therapy and beyond. Palo Alto, CA: Science and Behavior Books. Scheff, T.J. (2010). Genuine romantic love: Attraction, attachment, and attunement. New English Review. Retrieved from: www.newenglishreview.org Schonert-Reichl, K.A., Oberle, E., Lawlor, M.S., Abbott, D., Thomson, K., Oberlander, T.F., & Diamond, A. (2015). Enhancing cognitive and social– emotional development through a simple-to-administer mindfulnessbased school program for elementary school children: A randomized controlled trial. Developmental Psychology, 51, 52-66. doi: 10.1037/a0038454 Search Institute. (2009). 40 Developmental assets for children grades K-3. Minneapolis, MN: Author. VanderVen, K. (2008). Promoting positive development in early childhood: Building blocks for a successful start. Pittsburg, CA: Springer. Siegel, D.J. (2010). The mindful therapist: A clinician’s guide to mindsight and neural integration. New York: W.W. Norton & Company. Siegel, D.J. (2007). The mindful brain: Reflection and attunement in the cultivation of well-being. New York: Norton. Stephens, K. (2007). Responsive parenting nurtures infants’ secure attachments. Parenting Exchange. Retrieved from http://www.easternflorida.edu Stewart-Brown, S.L., & Schrader-McMillan, A. (2011). Parenting for mental health: What does the evidence say we need to do? Report of Workpackage 2 of the DataPrev project. Health Promotion International, 26, 10-28. VanderVen, K. (2008). Promoting positive development in early childhood: Building blocks for a successful start. Pittsburg, CA: Springer. Waters, S.F., Virmani, E.A., Thompson, R.A., Meyer, S., Raikes, H.A., & Jochem, R. (2009). Emotion regulation and attachment: Unpacking two constructs and their association. Journal of Psychopathology & Behavioral Assessment, 32, 37-47. doi: 10.1007/s10862-009-9163-z

Chapter 11

From Meaning-Making to Finding Meaning in Creating a Complex Blended Family: How to Foster a Healing Transformation? Stephanie Larrue & Christian Bellehumeur

Starting a family is an exciting venture for a couple embarking on a new phase of commitment in their relationship. With one out of two marriages ending in divorce in most western countries, people are increasingly living in common law relationships, and are forming more than one couple in a lifetime more frequently than in the past. As such, couples are forming new relationships and families, blending children from previous unions, and the number of stepfamilies – or blended families – is steadily growing. In these types of families, parents may not have the chance to properly experience the reputed “honeymoon phase” that comes before having children, and which acts as a cement for a couple in which to bring up children “made from scratch.” Yet, preparing a couple to create a family and live through the natural development stages of the child demands much commitment and effort on their part. Putting a family together from the pieces of “broken-up” families with children at various stages of development and building a new spousal relationship, all the while going through the grieving of the former family nucleus can prove to be quite a challenge for the couple and their children. The honeymoon phase experienced by a new couple who already have children is quickly shattered and the reality of blending two family units into one starts. 1. What Constitutes a Blended Family? A Multitude of Types of Blended Families The term “blended family” (or “stepfamily”) is understood in this chapter as including a couple with at least one partner who has a child from a previous union. The parents may or may not have children together, some children may be adopted, and the parents can be heterosexual or homosexual. Blended families extend to all parts of society,

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regardless of age, ethnicity, children’s living arrangements, or social, economic or marital status; the possible permutations are endless. Also, it is to be noted that the term “family” is used in its exclusive sense, and does not include polyamorous (multiple partner relationship) types. Complex Blended Families versus Simple Blended Families Complex blended families (or complex stepfamilies) have at least one child adopted or born from the current union, in addition to at least one child from a previous union. By contrast, simple blended families do not have a common adopted child or a child born from the union of the new parents. Some Statistics on Blended Families Blended families are increasingly prevalent in today’s society (Demasure & Tannous, 2014). 51% of blended families are complex (Statistics Canada Census, 2011). Over 50% of US families are “remarried or recoupled”; 66% of these families with children will break up; 50% of the 60 million children under the age of 13 are living in a blended family with one of their biological parents (The Stepfamily Foundation, 2015). White and Booth (1985) report that children were seen as diminishing marital satisfaction of remarried couples. Almost one third of U.S. children born in a blended family will have behavioural problems against one in ten in an “intact” family (Cadolle, 2006). Given these troubling statistics, as well as the rise in number of blended families, attention to challenges and resilience factors for blended families appears to be important. 2. Preliminary Challenges of a Blended Family Blending a family together is demanding for each of its members as new layers interplay with each’s former role within the new dynamic; this becomes more intertwined with a blending of two households of kids, especially if some children reside in the house and others only live there part-time. As well, intrafamily conflicts have a tendency to form within various subsystems, in certain dyads and tryads, as well as intrapsychically, within each family member (Demasure & Tannous, 2014). Shock of Culture and Different Family Histories, Meaning, and Models. Conflict in a blended family arises from the shock of different family

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cultures. Family models and values, including rules and expectations, from both (step)parents, as well as those from children and from previous family members clash and create dissonance, confusion, and frustration for all (Abignente, 2004; Furrow & Palmer, 2011). From a systemic standpoint and on a cognitive level, a family model shapes family members’ mental images of themselves, of others and of the family, family rules and family myths (Abignente, 2004; Ferreira, 2004). Both children and adults are aware of former family models, and have their own expectations in forming the new family model together, thus ensuring a rivalry between models on both cognitive and emotional levels (Abignente, 2004). A family model also includes an emotional side affecting the new family system: members still have emotional attachments to their previous family roles. Children especially are attached to their biological parent, and may feel guilt or fear of replacing that parent (Abignente, 2004). Children may also entertain fantasies of their former parents getting back together (Chedekel & O’Connell, 2002). There may also be a clash between how the stepparent and the biological parent see the role of the stepparent. The new stepparent may want to get close right away to the children, embracing his or her new parental status (Bray & Kelly, 1998), whereas the biological parent may be overprotective of them, or the children may be weary of a relationship with the new family member. A stepparent could have a different view of parenting, especially if he or she is also a parent, and it may be challenging for the couple to harmonize their vision. As for the family myth, this entails a certain number of systemized beliefs shared by all members of a family encompassing half truths, clichés and unspoken rules that cannot be put into question (Ferreira, 1963). A family myth is also a shared ideal or belief with which all family members identify, keeping them together, enriched by family stories and memories (Brunschwig, 2006). There can be more than one and they can take on mythical proportions as each member profoundly adheres to them as part of their family identity and image, thus nourishing the family model. A family model also includes cleanliness, lifestyle and organization, which can be very different for partners and children, especially if their backgrounds differ greatly. Integrating family histories, meaning and culture adds to the challenge of blending family models and family myths in harmonizing daily living and parenting on both cognitive and emotional levels, in addition to the intrapsychic and intrafamily levels.

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Confusion, Anxiety, Loss of Meaning and Conflict It can be hard to integrate family models, myths, values, histories, cultures and meanings among all the other adjustments and living arrangements that need to be made by each member of the new family. Spousal cohesion is therefore weaker than in an original family (Anderson & White, 1986). Confusion and loss of meaning over a new way of living often lead to anxiety, conflict and breakups. A family is by definition exclusive (Stewart, 2007), making it difficult to blend two together. Harmonizing two family models together fosters instability (Gabe & Lipman-Blumen, 2004; Jacobson, 1995). As well, children can easily harbour resentment from any comment or criticism from the stepparent (Cadolle, 2006): “Many stepparents encounter considerable stress in their new roles as they face negative cultural connotations of the stepparent role, ambiguous role definitions, and the concurrent myth of instant love in the new family, all while experiencing considerable adjustments and communicative challenges with stepchildren and extended family members” (Braithwaite, Baxter, & Harper, 1998, p. 102). Moreover, both biological parents, even though they are separated, can easily undermine the stepparent’s authority (Cadolle, 2006) by wanting to protect his or her children or the original family model, affecting the new family cohesiveness. Conflicts within the blended family often come from a need to clarify limits and roles, as well as from a lack of cohesiveness between the various family subsystems (Demasure & Tannous, 2014). Such unresolved and hidden conflicts can easily lead to a breakup as they unwittingly obstruct collaboration between family members (Demasure & Tannous, 2014), leaving a feeling of deep confusion and loss of meaning. Family members must deal with the loss of the former family model and the clash over a new one, or else face much anxiety within the family system.

3. Attachment Issues and Reattachment Processes Two Family Systems Blending Together Two family systems blending together means that two family histories and models become one (Linder & Linder, 2002). The number of children, and possible attachment dynamics among everyone—including

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former or external family members and newly acquired external family members—multiples this reality. Sorting out the various family attachment systems and subsystems and making sense of them demands time and conscious effort on the part of all as children are caught between custodial and non-custodial parents. As well, stepparents are feeling trapped between the children and the stepfamily. Such dynamics cause enmeshment for all and a breakdown in the quality of relationships and communication (Afifi, 2003). A stepfamily needs to find a way to integrate two attachment systems together, as well as two meaning systems together. Paloutzian and Park (2013) define a meaning system as a way of making continuous sense of data in accordance to one’s beliefs, emotions and behaviours, based on an inherent need “to make meaning… out of ambiguity” (Paloutzian & Park, 2015, p. 171), be it consciously or unconsciously. “Whitsett and Land (1992b) emphasized that the blended family is often strained by ‘loosening its boundaries to meet the needs of its members, while simultaneously tightening boundaries to maintain its own integrity’” (p. 80). Negotiating loosening and tightening of old and new boundaries as well communicating throughout this complex process fosters the risk for enmeshment to the point of much conflict in blended families, as family members are making meaning of these changes in their family model. Existential Family Crisis Mills (1984) remarks, based on clinical experience, that it is best for blended families not to model themselves on traditional or nuclear family models (Kelley, 1992; McGoldrick & Carter, 1989; Schweibel, Fine, & Renner, 1991), as their reality differs much (especially the child-stepparent relationship). Expecting to live up to such standards may end in bitter disappointment, anxiety and confusion. Due to the loss of the original family’s points of reference (Linder & Linder, 2002) in satisfying their basic needs for safety, comfort and attachment, blended families experience a great loss of meaning, “[m] eaning [being] central to human experience” (Park, 2013, p. 357). As meaning helps people understand and integrate their everyday encounters and perceptions of their environment (Park, 2013), losing one’s meaning system creates high anxiety and insecurity for these families as their collective image – and that of the individuals within it – is threatened or has already disappeared.

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An existential crisis ensues, as members have to deal with loss of identity, of recognition of their role and of their very existence within the family system. The world of meaning of the blended family members has been shattered, fostering a feeling of vulnerability and anguish (Park, 2013) as each members’ former global meaning system is no longer in accordance with their reality. They need to construct a new world of meaning (Neimeyer, 2000[2006]) by building a new family model and new attachment processes. Blended Family Processes A new blended family construction affects family processes, a systemic notion which encompasses family dynamics such as bonding and environmental structure, as family processes entail looking in detail at how the lives and relations of family members intertwine. This includes the quality of family relations and cohesion, parental commitment, as well as psychosocial aspects of parental figures (Stewart, 2007). All of these aspects contribute to the quality of the environment in which the children reside, where relationships should ideally focus on interdependency and commitment between family members (Scanzoni & Marsiglio, 1991). Studying family processes should involve looking at tensions of “loyalty-disloyalty” and of “revealment-concealment” within the communication patterns of the new family and with the former family (Afifi, 2003). Loyalty conflicts (or triangulations) come from covert coalitions forming between various members within the stepfamily and with the former family; undisclosed information targeting a family member (like an added-on stepparent with no children) may foster unhealthy alliances (Afifi, 2003). Discrepancies in the way family members manage privacy may also emerge. A healthy negotiation and regulation of information entailing boundaries of disclosure with all members is often lacking in conflicted stepfamilies. Ownership of that information is also not recognized (Afifi, 2003), fostering non-cohesive family dynamics and noninclusive relationships. Attachment Wounds, Emotions and Family Dynamics According to Monbourquette (1994), there is a certain sequence of emotions and feelings an adult goes through after a separation: anxiety and despair, humiliation, fear of loss, solitude, anger and hostility, guilt, a sense of freedom, acceptance of loss. The feelings may differ slightly

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whether the parent initiated the breakup or not, as other feelings may also creep up such as confusion, jealousy and resentment. Children will be going through similar sentiments and will be feeling those of their parents consciously or not. Parents may be caught up in many material aspects related to the separation, and fail to attend properly to the children’s or to their own emotions. Yet resolving the losses for all is a lengthy process (Hazan & Shaver, 1992) not to be underestimated: a more harmonious new stepfamily will not fully happen until the grieving has subsided (Furrow & Palmer, 2011). As the parent is rebuilding a new family for his or her children, emotional loss is often underestimated (Furrow & Palmer, 2011). These old attachments get in the way of forming new attachments (Abignente, 2004) and can be hard to undo. Partners may still have residual feelings towards former partners (Monbourquette, 1994), especially if they were not the ones to initiate the breakup, whether they are forming a new family or are the ones left behind. Losing a relationship, for the partner or for the child, is like losing a part of oneself, leaving the person feeling amputated, not whole (Monbourquette, 1994). If the feeling of loss is not attended to, it can cause barriers to forming new attachments, for both parents and children. Unresolved family wounds will create entanglements, which can turn into enmeshment or emotional cut-off in the stepfamily, as well as unhealthy alliances and conflicts (Gratwick Baker, 1998). Children are torn between former family member loyalties and the realities of their new family, finding it difficult to attach to the new couple and stepparent, often dividing them and straining their relationship. This in turn, makes for trust and power issues (Furrow & Palmer, 2011). If a child’s emotional loss is unattended, loyalty conflicts become apparent (Visher, et al., 2003; Furrow & Palmer, 2011). As well, the biological mother (as ex-partner) especially tends to intrude upon the new family in all sorts of small ways (Bethenot Auch-Roy, 2009). Attachment wounds and trust issues are thus reactivated for all, violating the stepfamily’s need for its own space for growth and intimacy. And it is much harder to mourn the loss of attachment to someone still living, such as the other biological parent (Bowlby, 1973). As well, partners harbour hopes that their new life with their partner will be more satisfying than with their former partner, illustrating a painful hidden emotional need (Furrow & Palmer, 2011). Chronic anxiety and emotional reactivity may be high in blended families during the first three to four years as members address all of those attachment and

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systemic issues all at once (Gratwick Baker, 1998). The stepfamily will be built on both past and present realities that may foster ambivalence among the partners (Furrow & Palmer, 2011). A complex blended family brings on challenges of its own as the new child brought into the world is both a source of stronger cohesion for all family members, as it can be a source of newfound conflict (Bethenot Auch-Roy, 2009), since children are afraid to lose their place within the still fragile family structure. Newly formed parents must take the time, as in non-blended families, to reassure the children and help them find a new place that they will appreciate in the new family structure in order to strengthen the family base (Bethenot Auch-Roy, 2009). All in all, the biggest challenges within the formation of a stepfamily are the emotional and attachment issues, which if left unattended, create enmeshment that can lead to emotional cut-off or a break-up. All members must take into account their personal grieving of lost relationships and roles. Parents have a special tendency to overlook this area (as much for themselves as for the children), as they feel flooded by the reorganizing of many other daily tasks, on top of blending family models. Resulting conflicts and crises are a telltale sign of unvalidated emotions and attachment losses. As well, there will always be an ongoing challenge with the other living biological parents, as they are a relentless reminder of past wounds and a past family model. Recognizing all of these issues greatly facilitate the integration of the newly formed blended family. Consciously going through the emotions related to these losses and rivalries that come with these challenges and communicating throughout the blending of the family models help facilitate resiliency towards a stronger family base and meaning. 4. From Emotional Adversity to Emotional Negotiation and Fostering Resilience Naming Unmet Needs Parents and children both feel they have lost control over their needs, and thus also their influence in the stepfamily (Furrow & Palmer, 2012). Each member has self, relational and spiritual needs (Briscoe-Dimock, 2013) as well as physical intimacy needs (Meier, 2016). Self needs relate to being admired for one’s competence and affirmed as lovable. Relational needs include those for connection, concomitantly with separateness. Spiritual

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needs are about meaning, purpose (Briscoe-Dimock, 2013) and “understanding oneself in relation to others” (Muse-Burke, 2004, p. 33). Physical intimacy needs are both sexual and non-sexual and include a need for closeness and proximity as well as touch (Meier, 2016). The first and foremost unmet needs to be attended to are the losses, which are both self and relational needs. Such losses include attachment losses, loss of role, status, friends, former family, school, and former happiness (Monbourquette, 1994). The grief experienced is unique and personal to each family member and must be honoured as such. Working through the grieving process helps rebuild one’s “personal world of meaning” and identity (Neimeyer, 2000). Also, adults and children alike need to name their emotions and feelings that have not yet been recognized by the self and others, as part of reconciling with oneself as well as with others, thus satisfying self, relational, spiritual needs, in addition to physical intimacy needs. Children and parents both need to find their new identity and to figure out through assertiveness and dialogue how to satisfy these needs. Each must discover who they are in the new family, what their role is, what it represents to them and to others, as well as their dynamics with other family members (Bethenot Auch-Roy, 2009). Boundaries are created as much in daily interactions and dynamics as in house rules, personal and shared space, and individual roles. These limits are important for the growing children as a symbol of their own psychoaffective growth (Bethenot Auch-Roy, 2009). Preserving a secret garden for each family member as each one’s safe haven may also be a healthy way of preserving personal intimacy for all (Bethenot Auch-Roy, 2009; Guédeney & Lamas, 2009). Preserving each’s intimacy can also mean not justifying one’s needs for a boundary or rule as long as others feel respected. Rules and discipline instilled by the stepparent will only be recognized by the children when their own needs have been addressed and when trust has been established with the stepparent (Doherty & Colangelo, 1984), once the couple is seen as stable. Trust (inclusion) and control (power) become important elements for the couple in enforcing the children’s education when building a cohesive new stepfamily (Furrow & Palmer, 2011). Gaining Clarity through Family and Spousal Dialogue Once these various challenges are recognized, communicating them is essential to diminishing conflict, anxiety, enmeshment and emotional

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cut-off. The formation of the blended family’s new attachments is strongly influenced by each member’s role and territory assignment (Demasure & Tannous, 2014). A phase of negotiation ensues, which will help build trust and redistribute power more equitably. A family who is able to work through this phase will develop much resilience (Stewart, 2007). Conflicts must be brought out into the open, and each family member’s needs must be discussed, not to look for family cohesion but to honour each one’s needs and differences so that rules and boundaries can be set and enforced (Bethenot Auch-Roy, 2009). Listening and observing are key factors as certain members may struggle to recognize or name their needs, or even assert themselves (Bethenot Auch-Roy, 2009). Understanding that there are competing attachment needs between all members is an important step towards resolving them (Furrow & Palmer, 2011); this helps family members better understand and appreciate each other (Palmer & Efron, 2007). The couple is another key factor in fostering resilience in blended families (Demasure & Tannous, 2014). As the children’s needs take centre stage, it is challenging for the couple to create their own necessary emotional space (Gratwick Baker, 1998). The new partners must negotiate a phase of intense communication to recognize and find ways to respond to each’s expectations (Linder & Linder, 2002; Sauzède & Sauzède-Lagarde, 2005), needs and losses. They will thus learn to withstand former gnawing realities, undo children’s and former partners’ negative influence and strengthen their connection to become a secure base for the newly formed stepfamily (Furrow & Palmer, 2011; Michaud, 1997; Rovers, 2013). Paradoxically, while children must take center stage emotionally in order for the new family to thrive, a solid couple is based on strong emotional bonds that serve as a model for the children who also seek emotional stability (Bethenot Auch-Roy, 2009). A couple that has forged a strong relationship within the stepfamily will not be manipulated by the children (Bethenot Auch-Roy, 2009) or by others, for the sake of everyone’s emotional security and healthy differentiation. Creating a healthy and harmonious living environment through a strong spousal relationship will help children heal from attachment wounds and set new roots in their new secure family base and safe heaven (Bethenot Auch-Roy, 2009; Bowlby, 2005; Guédeney & Lamas, 2009). The biological parent is most responsible for this task, as he or she must secure the child and safely integrate the stepparent, reinforcing

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the link between the two (Furrow & Palmer, 2011). As relationships are reinforced, children feel more secure and the family becomes more stable. Creating a Safe Haven and Secure Base Special attention must be paid to the quality of daily interactions with children (Monbourquette, 1998), and to isolate them from their parents’ hurt feelings regarding the former family and the challenges of building the new family. This also entails requiring respect form external family members, as all adults are responsible for creating a strong, loving and benevolent setting in which the children can prosper (Bethenot AuchRoy, 2009). Encouraging the children to speak about their emotions and perceptions will further their healing as well, for they need recognition in order to form an identity (Redekop, 2002). A safe haven (Guédeney & Lamas, 2009) for all in a stepfamily entails rules and boundaries to be respected by all members, mutual support in family decisions, and consistent and stable points of reference for the children to foster trust and emotional safety (Bethenot Auch-Roy, 2009). The blended family faces its biggest challenges mostly at the beginning, before it can solidly establish itself (Demasure & Tannous, 2014). Focusing on Resiliency to Find Meaning As such, blended families do well if they accept risk and concentrate on resiliency and family process, rather than on their hardships (Hetherington & Kelly, 2002). Stepfamilies must focus on recognizing stressors and obstacles to their adaptation in order to diminish or remove them altogether (Amato, 1994; Hetherington & Jodl, 1994). As parents work healthily through their grief, they show the way for the children to do the same (Monbourquette, 1998). All in all, blended families who work things out develop resiliency and create a fertile and stable ground for growth. “[S]tress-related growth refers to coming to see a negative event as the catalyst for positive life changes… such as reorienting one’s life and rededicating oneself to reordered ultimate goals, while others involve smaller changes such as being more intimate with loved ones, handling stress more effectively, taking better care of oneself, seeing one’s own identity more clearly, feeling closer to God, being more appreciative of the everyday aspects of life, and having the courage to try new things” (Park, 2013). Parents will

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especially benefit from clarity and safety regained and will be more capable of safeguarding the same for the children in a way that all will find new meaning as they grow and feel nurtured through this complex transformation into a new family. 5. Towards a New Meaning Meaning-Making through Recognizing Past and Present Self and Family Images Meaning-making allows one to reinstate an overall meaning when it has been lost. It also allows one to see a situation in a new way, transforming one’s beliefs and goals in order to rekindle or build a sense of understanding (Park, 2013). Finding meaning is an active process involving each individual (Frankl, 1969) through behaviours and thoughts of daily activity (Park, 2013). This is reflected in the blended family, as each member seeks meaning for oneself within the new family paradigm being formed. In order to build their new family, blended families learn to honour individual and family differences and beliefs to create a new sense of belonging and of meaning (Furrow & Palmer, 2011). The new family must put special attention on building a new common identity through meaningful experiences that will restore the sense of meaning they have lost. Also, one must realize that the new relationship between stepparent and child will often turn out to be very different from what was imagined originally (Furrow & Palmer, 2011). Communicating each other’s perceptions of what a family entails, as well as personal meanings, helps integrate members into a new individual and family whole. Family members can also be encouraged to find meaning in the loss of their former family (Monbourquette, 1994). They can discuss forming new family roles, a new family model, image and myth through family meetings to explore the hidden inner resources and strengths of each family member (Monbourquette, 1994), and what they can bring to their relationships with the others and to the new family as a whole. At the end of the grieving process, Monbourquette (1994) invites family members to discover the heritage or lessons learned from the loss of the former family. Also, for a stepfamily to build its own identity, family members need to accept their reality and be patient (Demasure & Tannous, 2014).

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Fostering Healing and Meaning through Creating New Experiences and Rituals towards a New Family Myth Creating rituals and traditions for the newly blended family is very helpful in the healing and meaning-making process (Chedekel & O’Connell, 2002; Visher & Visher, 1978). “[T]he rituals of our relational lives serve to pay homage to dyadic, family, and group relationships” (Braithwaite, Baxter, & Harper, 1998, p. 103). As well, “rituals can help maintain and perpetuate a family’s system of shared beliefs and identity” (Braithwaite, Baxter, & Harper, 1998, p. 103). Furthermore, “Bright (1990) asserted that rituals assist families in ‘resolving conflicts and resentments, negotiating relational boundaries, and developing new shared meanings about their ongoing life together’” (p. 24). Finally, “Murrey (1990) contended that rituals allow us to ‘reflect on the past, create the future, and become complete’…” (Braithwaite, Baxter, & Harper, 1998, p. 104). One possible ritual is to have each member find meaning through the reappropriation of something of importance from the former family involving the lost member (Monbourquette, 1998), or the loss of one’s role or status, or that of the former family’s myth or image. Each member can bring a symbolic image representing what was valued and is considered lost from the former family, affecting oneself, another family member or the family as a whole. This former life heritage can then be reappropriated to help each family member become whole again and find new meaning, hope, and roots within the new family structure. Other rituals can be daily routinized interactions, such as family bedtime stories that can bring special meaning to family members and nurture bonding (Braithwaite, Baxter, & Harper, 1998). Furthermore, a new family myth helps to consolidate a new family identity built on “establishing new family rituals and traditions” (Baxter, Braithwaite, & Nicholson, 1999, p. 292). “The celebration of holidays and special events is an opportunity for blended family members to build and sustain close emotional bonding” (Visher & Visher, 1990, cited by Baxter, Braithwaite, & Nicholson, 1999, p. 307). This helps give meaning to their experience as a whole within the newly blended family. Experiences of quality time help sustain that feeling of a wholesome and secure family setting, with members “feeling like a family” (Baxter, Braithwaite, & Nicholson, 1999, p. 307) in the blended family. Moreover, these experiences give the fragile stepparent-stepchild relationship a better chance to grow and be nurtured, “contributing to positive feelings of familyness” (Baxter, Braithwaite, & Nicholson, 1999,

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p. 307). These new experiences help nourish a new family meaning and myth comparable to that of a traditional, non-blended family. In short, since family myths are built on stories, images, photos and memories (Brunschwig, 2006), as the stepfamily builds a life together, new family experiences are made and shared that can contribute to creating new family myths. This process can be encouraged through telling stories from shared experiences and making a collage of images and photos from these experiences. Diagram 1 illustrates the Blended Family System Model that results from the process of how a blended family rebuilds its family system as described in this chapter. As presented in the model, the system is both dynamic and interdependent, as cut-off and break-up of the system can happen at any level of the system’s process since a blended family system can be volatile and fragile. As well, this model can be used as a treatment plan with blended families integrating systemic, emotional, cognitivebehavioral and existential approaches into one model. Hence, a family can be rebuilt on giving meaning to one’s losses through rituals. Ritualizing experiences in daily living contributes to creating new meaning for the blended family, rooting it in a new sense of emotional security. As new experiences are formed in the rebuilding family, new family myths are born through mental and physical images, as well as family roles. To further understand the importance of images, symbols and myths, Durand (1960[1992]) has proposed a framework of the imaginary using an anthropological lens. 6. The Crucial Role of the Imaginary in Creating a New Family Myth Gilbert Durand’s theory on the Anthropological Structures of the Imaginary (ASI) may help guide this process with its integrative and encompassing views on human nature, as Man is seen as a homo symbolicus. In this section, firstly, Durand’s framework will be examined. Secondly, its heuristic potential for the study of family systems will be demonstrated. According to Durand (1960[1992]), there are two great “systems” constructing mental, visual and narrative images, being the diurnal and nocturnal systems. These systems of the imaginary are based on opposing worldviews, one identified as “heroic and purist” structures, and the other as “intimate and merging” structures. Only a third category of

Diagram 1: Blended Family System Model, by Larrue (2016)

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structures, called “synthetic”, and later “systemic”, can ensure that the opposing schemes of the imaginary reach a healthy harmony by maintaining themselves in each other’s presence without mutual exclusion. What exactly are these realities of the imaginary, where each system has its own mental image assembly laws and logic? The Mythical World of the Heroic Type The schizomorphic / heroic structural pole (or heroic and purist system) refers to the diurnal image system and is characterized by principles of separation, distinction, and ascension (Durand, 1960[1992]). In this structural pole, principles of exclusion, contradiction, and identity are predominant, while the verbal schema to which it is assigned is that of distinguishing. This pole depicts a heroic struggle as part of an active lifestyle meant to counter the anxiety of time and the threat of death (Xiberras, 2002). The Mythical World of the Mystical Type The intimate / mystical structural pole is supported by the nocturnal image system. Analogy and similarity principles characterize this pole for which the predominant verbal schema is that of confounding or merging. It is about finding peace, without turbulence. Everything is fusional, everything is friendly, gentle, happy and peaceful (Xiberras, 2002). The Mythical World of the Synthetic Type In an individual or in a community, if an imaginary pole takes up too much space at the expense of the other, which almost falls into lethargy, an unhealthy condition sets in and causes discomfort (i.e., personality disorders, deep cultural conflicts, historical periods of war). To remedy these problems, synthetic structures (originally named systemic structures), which are distinguishable as a balanced coexistence of the two previous structural poles (Durand, 1960/1992, p. 400), “connect” (verbal schema) the opposites in a rhythmical or cyclical manner (Xiberras 2002). The Buddhist vision of interdependent co-production of all things, the circumference of the Taoist yin and yang, the coincidentia oppositorum of the Alchemists, the cross also, with its vertical and horizontal axes, are good images of harmonizing opposites Durand (1960[1992]).

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In short, from a psychological point of view, synthetic structures reflect those of health and mental balance, the idea of progress and healthy growth, and to be even more precise, the recycling of essential and fundamental elements of the past in the present, as is the case in the process of recording history. Furthermore, Yves Durand (2005) has developed an empirical tool (AT.9) that is used to obtain an overview of the dynamic of mythical structures of a given person; he showed that all main mythical structures (heroic, mystical and synthetic/systemic) could be observed in both positive and negative forms. For example, a heroic structure can be represented at times, according to a given participant, either as a positive struggle (e.g., the character fighting a devouring monster) actively fighting for his survival, and showing signs of resistance; in another case, the heroic structure is said to be in a negative form (e.g., the character is still fighting but is losing against the monster to the point of an eminent death). Creating Integrated Family Models through Images and Myths Conceiving a new family myth (Ferreira, 1963) is a powerful way of integrating meaning and creating a new family model and image. The stepfamily may find direction and healing in the integrative process of balancing opposing universes of meanings and images into one family myth. And applying Gilbert Durand’s theory may help guide this process with its integrative and encompassing systemic-synthetic processing, through the balancing of heroic and mystical universes of meaning. One blended family problem mentioned earlier relates to a basic contradiction between old and new family structures of “two families that are simultaneously united yet opposed” (Braithwaite, Baxter, & Harper, 1998, p. 115). For a blended family who may be living a brand new experience with very few models of reference, resolving this challenge echoes with the synthetic/systemic structure of Durand’s theory. A second idea refers to the notion of myths, central to Durand’s theory. Neuburger (2005) suggests that a family crisis is “mythical” and that it is provoked by threats to the family identity, which is sustained by a certain “myth” that encompasses the family’s characteristics, members’ roles and functions, as well as decision processes. As such, within the new family dynamic and attachment process being formed in the stepfamily, each family member will need to find his or her own new identity and role, thus fostering a new image of oneself through the new family image and family myth.

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A third idea that may link Durand’s theory to blended family dynamics refers to the notion of growth. In Durand’s theory, growth is associated to the synthetic/systemic structure. Namely, “growth appears to come from looking for positive aspects of negative events and identifying some redeemable features of the experience, which may involve changes in both situational and global meaning (Park & Fenster, 2004)” (Park, 2013, pp. 371-372). The family will also find meaning through a common identity, which includes living unique common experiences by the couple with the children and within their partnership (Furrow & Palmer, 2011). As Durand’s notion of imaginary is dynamic and refers to the importance of systems (Durand, 2011), we can assert that the blended family is a dynamic system that can also be examined through the lens of a developmental approach. 7. Blending a Family Towards Transformative Deep Emotional Healing and New Meaning through the Stages of Development of a Blended Family A case study of a complex blended family will help embody the theory presented in this chapter. The Landers-Thibodeau family is a complex blended family that has been together for just over three years. The characters depicted are a combination of various people and blended families and are entirely fictional. Théo Thibodeau is the 40-year-old father of two teenage daughters, Edith, 17, and Sonia, 15. The girls’ mother is out of their lives after failing to take care of them, as she lived with an abusive drug addict. Théo had met Sylvie around the same time he regained sole custody of his girls, about three years ago. Sylvie Landers was 33 at the time and wanted to start a family. She quickly became pregnant, having felt her biological clock ticking. Théo was both glad to start a new family and to bring back his girls into a stable home as he and Sylvie both had good jobs. Three years later, little Gregory Landers Thibodeau is thriving; Sylvie, now 36, is still learning how to be a stepmom to her teen daughters while going through the “terrible two’s” with her son. As for Théo, he has lost his job and has retreated into a depression. As Sylvie is now the sole breadwinner, she wrestles with Gregory’s upbringing on her own, as Théo has withdrawn from family life, having chosen to uphold his social status by helping his friends – and his confidence. Meanwhile, Edith and Sonia, both still getting comfortable in their new home and recuperating from the unsafe environment formerly provided by their mother, are feeling

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destabilized by the new family situation. The girls feel as though they are losing the father with whom they have just managed to reattach themselves, now that he has cut himself from everyone. They are also still getting used to the new dynamic created by their little brother while also establishing a relationship with their stepmother. They are confused about what place their stepmother should have in their heart as they already have a mother, whom they have now rejected. As teenagers, it is hard to bond with Sylvie as a new mother while going through their own differentiation. Three years in, the family is shaken up by Gregory’s new stage of child development and the loss of Théo’s support to his daughters, son and partner. Sylvie has not had a chance to strengthen her relationship with the girls since Gregory quickly took up most of her energy and time, and is even more demanding now while she has taken on more family duties to overcome Théo’s absence. Edith is feeling abandoned by Théo and Sylvie and is coping by overperforming in many activities outside of the home. Sonia is also not feeling part of the family and is coping by withdrawing into her room, playing video games and underachieving in school. Neither is helping with family chores or with Gregory, as they used to before their father lost his job. Diagram A: “Papernow’s Stepfamily Cycle” (1984, 1993), presented by Stewart (2007), adapted by Larrue (2015) Stage 1. Fantasy

2. Assimilation/ Immersion

3. Awareness

Description Early Parents: Hope of being an “instant family”. Children: hope that their biological parents will come back together. “Reality” sets in. Daily challenges augment sense of unease for all. Stepparents are particularly ill at ease.

Stepparents realize they are an “outsider”, whereas the biological parent is bearing the brunt of the “insider”.

Life Cycle Tasks Recognizing fears, fantasies, desires. Children particularly start recognizing the loss of their original family. Acknowledging that the fantasy of an “instant family” is not coming true. Stepparents learn to deal with a new way of life and feeling rejected. There is still hope for the future. Each family member is learning his or her place. Expectations are being lowered and feelings start being named.

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Stage 4. Mobilization

5. Action

6. Contact

7. Resolution

Description Life Cycle Tasks Middle Differences are Naming unmet needs expressed. Conflict and and impressions. The disorganization increase. couple starts focusing more on itself. “Insiders” and Negotiating on the daily “outsiders” struggle less way of life of the family in power issues. with new boundaries, especially around step-relationships. Later Stabilization. Spousal Moving towards a relations ameliorate, as functional stepparent well as stepfamily role and letting go of relationships. emotional wounds. New norms have been Progressive accepting of established and differences and staying stepfamily relations are open to new family stable. Members are issues arising. more and more clear and satisfied. The stepparent becomes an “intimate outsider”.

As per Papernow’s Stepfamily Cycle (1984; adapted by Stewart, 2007), the family has gone through the first stage: “fantasy,” or the excitement of becoming an “instant family.” Edith and Sonia learn to acknowledge the loss of their original family, as Sylvie has other views on housekeeping and family rules and seems more demanding. The Landers-Thibodeau family is now entering the third stage of Papernow’s model, having barely negotiated stage two, “immersion” (“assimilation”), in which the partners try to incorporate the “instant family” fantasy into the daily routine. Here, Sylvie, still hopeful, realized how challenging it is for her to establish trust with her stepdaughters, who resist her ideas. Now in stage three, Sylvie sees how she is an outsider in her own blended family, as Théo and his daughters have a natural bond and Théo tends to defend them against Sylvie when they complain about her housechore demands. As the family is pulling apart, Sylvie is trying to keep it together by being supermom and complaining to deaf ears. She now sees how her role is only as strong as her partner Théo’s support, without which she no longer has any power to run the new family model she is trying to

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build. She wants to go into stage 4, “mobilization”, and air her concerns and needs. Sylvie and the others are losing hope while dealing with anxiety, loss of meaning, and confusion over the rebuilding of their family; there was no family core—a strong, united couple to help restore the process. At this point, the family is headed for a breakup. They have all lost sight of who they are, and of the family image foreseen by all. Family therapy would help all family members recognize their emotions, losses and needs. Sylvie would be able to voice her need for Théo’s support and communication so they can help each other. She would be able to grieve her “perfect family” image as well as understand that she cannot control her stepdaughters without gaining their trust first and learning to understand who they were before coming into this new family. Edith would love to bond with her new stepmother, to overcome having been parentified by her biological mother. She is used to responsibilities but needs a break, as well as more nurturing and recognition from her new “mom” and dad first before she can give back. She wants encouragement, not chiding, about how to do family chores Sylvie’s way. As for Sonia, she feels utterly invisible. Her sister Edith has always been the responsible one and, now with a baby brother, she no longer knows her own place. Both Edith and Sonia still need to renew their relationship with their dad before opening up to Sylvie. Edith feels like she is competing for her father’s love with Sylvie; Sonia feels like she is the last in line for it. Formerly the family clown, Sonia is now focused on Internet video games where she has built a new persona, and feels recognized and worthy. Théo needs recognition as well, and is getting it by investing in his social circle and giving the illusion of being the perfect friend, father and spouse. Yet he is not realizing how important a link he is between family members, putting great stress on his family. All of these needs and concerns would come out during stage four, with the aid of the family therapist who would then nudge them towards stage five, “action”. In this stage, family members would clearly name their wounds, expectations, and a family model with which they would be able to negotiate. Théo and Sylvie could strengthen their bond by listening to each other’s needs for mutual support (moral support and more sex for him; family time and rules, sharing chores, childrearing and more romance for her). Théo must satisfy his daughters’ need for bonding and recognition, as well as give them structure by negotiating rules and boundaries with Sylvie while keeping their girls’ needs in consideration.

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Edith wants time for her extracurricular activity. Sonia wants to move to the basement instead of sharing her room with Edith. Sylvie would like for them all to have scheduled dinners together, and for the girls to help with laundry and dishes, keep their room tidy and take weekly turns babysitting so she and Théo can have a couples’ night out. More structure and more help with family chores would free up Sylvie and lessen her resentment towards other family members. As well, Sylvie would learn to run her ideas for family rules and boundaries by her partner first and make sure decisions are mutual before she presents them to the girls. Théo must stand by his partner, so as to present a strong, unified front for the girls to be able to find security in their partnership. After boundaries have been drawn and agreements made, stage six would begin: that of picking up the pieces of their “broken” blended family and “broken” selves from their past family experience, to start building a new stepfamily. A new base can be found with new communication and understanding, where everyone’s role is clear and each is taking on new responsibilities, creating a new family model. Sylvie can slowly take on a new role with her stepdaughters as they regain their father and commit to a stronger family model, letting go of past hurts and attachment wounds linked to their mom and stepdad. With Théo’s blessing to build a relationship on her own with the girls, Sylvie can play video games with Sonia, show Edith how to cook and bake, bond with them while nurturing a relationship between them and their little brother through playing and exploring the world together during walks and city park playtime. This is the sixth stage, named “contact”, where each family finds his or her place and feels accepted, and where the child that has made the stepfamily into a complex stepfamily is seen as a symbol of cohesion and is protected and valued by the older siblings who now feel more secure (Cadolle, 2006). The final and seventh “resolution” stage offers a more solidified view of family relations, differences and norms. Sylvie can now be seen as a full-fledged stepparent, “an intimate outsider” who is helping to build a new family myth with its own rituals and experiences, such as birthday celebrations and holiday gatherings. Celebrations that both Sonia and Edith can have a huge hand in (entertainment aspects; menu and decorations), with the support of both Sylvie and Théo who accept any theme the girls concoct. Family memories can be created, and meaning found through shared experiences where each has a place and voice. A new family myth is

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emerging of a “good enough and wholesome family who has gone through a lot and survived together”. Théo, finding new strength and recognition within his family and seeing how needed he was, can gain the confidence to find a new more suitable job as he better knows who he is and what his values are. With time, each family member finds meaning and purpose by satisfying self and relational needs, thus nurturing their personal and family image and their spiritual need to be part of a family myth that makes sense to them. Lastly, we highlight an interesting link between Papernow’s developmental stages with Durand’s theory of imaginary. Because Durand’s structures can be observed as either positive or negative (Durand, 2005), the Diagram B shows that different mythical structures may be more relevant to a given stage. 7. Conclusion: Creating a New Balance with a New Secure Base Founded on New Meaning Fostered by Relationship Resilience Finding Healing in a New Secure Base and Safe Haven As enmeshment and conflicts resulting from unclear boundaries, rules, expectations, unresolved wounds and unmet needs are disentangled (Abignente, 2004), a blended family can attain a new secure environment in which each member can find clarity, a secure base, and a safe haven (Bowlby, 2005; Guédeney & Lamas, 2009) in which to thrive. Each family member will be able to individuate in each one’s own safe physical, mental, and emotional space where each can balance between needs for solitude and needs for engaging in family relations. Time is also an important factor towards each one’s balancing out the tension between a need for stability and a need for flexibility (Fontaine, in Abignente, 2004). Finding Meaning in “Good Enough Wholeness” To find healing and meaning, a complex blended family must strive for a new “good enough wholeness” to grow through their nurturance (Abignente, 2004). There may always remain some unresolved issues within the blended family, as there may still be remnants of incompatibilities between the original family models, resulting in certain conflicts and contradictions which will need to be tolerated in an environment

Papernow’s Stepfamily Stage 5: Action (both negative heroic Cycle universe and synthetic universe), the struggle is still there but is reduced in intensity… this seems to be a gradual shift towards the synthetic structure…

Both stages 3 and 4, Awareness and Mobilisation, represent both progessively negative heroic universes and echo negative struggles

Diurnal Heroic structure To distinguish

…with time, stage 6 shows signs of progress going towards stage 7, Resolution (positive synthetic universe), which allows the stepparent to become an ‘intimate outsider’, a sign of co-existence of opposites. Both mystical and heroic structures cohabit.

With stage 6, Contact (both positive mystical universe and positive synthetic universe) is now seen as more positive…

Nocturnal Synthetic or “systemic” structure Mystical structure To link To mix or to “confound” Stage 1 Fantasy (both positive and negative mystical universes), and stage 2 Assimilation (both negative and impure mystical universes): can be seen as more or less harmonious, yet the family tries to remain cohesive

Diagram B: Linking Durand’s Theory to Papernow’s Stepfamily Cycle

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secure enough to allow it. Also, establishing new rituals to reinforce the new family is a slow-building process (Braithwaite, Baxter, & Harper, 1998). It takes between 4 to 12 years for a blended family to attain an equilibrium of adequate functioning and nourishing family relations as well as of found meaning, although these aspects will never be as fulfilling as that of the original family (Cloutier, 2005; Papernow, 1993). Finally, a blended family, although rooted in the past, is resolutely geared towards the future: “[i]t focuses on what is to be, rather than on what already is” (Gonzalez, 2009, p. 150). As such, a blended family constitutes a “new family code” , one that is still being decrypted for both therapists and families, and in which stepparents must find their own special place within each blended family’s circumstances (Cadolle, 2006). Discussion Within the two-family systems blending, Durand provides an encompassing view of the healing dynamics of the stepfamily through time. It is important to realize that the process of forming a “good enough stepfamily” is a long one and that much patience and tolerance is needed from all members, especially from the stepparent. Papernow’s stepfamily cycle is not a smooth, linear path. This is emphasized by the application of Durand’s model on the Landers-Thibodeau family. Over the years, the family oscillates between positive and negative enmeshment and positive and negative separation or even emotional cut-off, which may give an impression of various regressions in the well-being and dynamics of the family, even though they may be necessary to the overall healing path. This type of therapy is long-term and may necessitate a more fragmented approach on the part of the therapist who, depending on what stage he or she is working on with the family, may not have a chance to see all of the members nor to follow all of the stages. The Papernow/ Durand model becomes then all of more reason to understand the full dynamics of the whole process. As well, family therapy does not always include existential and spiritual aspects in its approach. Taking into consideration how imagination, through self models, family models and family myths, are an important part of the underlying dynamics may give a new handle on the need for a family to anchor new meaning in the new attachment they are striving to create.

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Further research could be done on the role of imagination in the stepfamily healing process through rituals and through self models. As well, it could be of interest to compare both the simple blended family and the complex blended family as they go through the Papernow/ Durand lifecycle. Further research could also examine the specific spiritual implications for each family member and of each family system as they transform throughout the cycle. Additional considerations to explore involve comparing the unique challenges of the sole stepparent integrating a new family and how there may be different challenges for a man than for a woman with regards to imagination and spirituality. Reflection Questions 1. Regardless of the type of family you come from (blended or not), what are some family myths that your family has created? 2. What are some of the potential barriers to creating a healthy blended family? What are some of the possible solutions to each barrier? Glossary Blended family (or stepfamily) is understood as including a couple with at least one partner who has a child from a previous union. The parents may or may not have children together, some children may be adopted, the parents can be heterosexual or homosexual. Blended families extend to all parts of society, regardless of age, ethnicity, children’s living arrangements, or social, economic or marital status; the possible permutations are endless. Complex blended families (or complex stepfamilies) have at least one child adopted or born from the current union, in addition to at least one child from a previous union. Emotional cut-off: An emotionally cut off family is a disengaged family where no discussion of each other’s needs, roles, habits or thoughts is tolerated, and individual values are either not recognized or deemed unacceptable. Enmeshment: A family is enmeshed when roles, boundaries, and needs are not clear nor discussed, creating conflicting, obsessive and anxious relationships.

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Family model: shapes family members’ mental images of themselves, of others and of the family, family rules, roles, values, way of life, family culture and family myths. It also includes an emotional side affecting the new family system: members still have emotional attachments to their previous family roles. In everyday life, a family model may encompass cleanliness, lifestyle and organization, which can be very different for partners and children, especially if their backgrounds differ greatly. Family myth: Family myths are built on stories, images, photos and memories. They entail a certain number of systemized beliefs shared by all members of a family encompassing half truths, clichés and unspoken rules that cannot be put into question. A family myth is also a shared ideal or belief with which all family members identify, keeping them together, enriched by family stories and memories. There can be more than one family myth and they can take on mythical proportions as each member profoundly adheres to them as part of their family identity and image, thus nourishing the family model. Family Processes: A systemic notion that encompasses family dynamics such as bonding and environmental structure, as family processes entail looking in detail at how the lives and relations of family members intertwine. These processes include the quality of family relations and cohesion, parental commitment, as well as psychosocial aspects of parental figures. These aspects contribute to the quality of the environment in which the children reside, where relationships should ideally focus on interdependency and commitment between family members. Intimate / mystical structural pole: Supported by the nocturnal image system. Analogy and similarity principles characterize this pole for which the predominant verbal schema is that of confounding or merging. It is about finding peace, without turbulence. Everything is fused; everything is friendly, gentle, happy and peaceful. Meaning is in the centre of one’s life experience, it helps people understand and integrate their everyday encounters and perceptions of their environment. Meaning-making is a way of making continuous sense of data in accordance to one’s beliefs, emotions and behaviours because of an innate need to find meaning where there is no clarity, either consciously or unconsciously. It allows one to reinstate an overall meaning when it has been lost to see a situation in a new way, transforming

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one’s beliefs and goals in order to rekindle a sense of understanding as before. It is done through behaviours and thoughts of daily activity. Schizomorphic / heroic structural pole (or heroic and purist system) refers to the diurnal image system and is characterized by principles of separation, distinction, and ascension. In this structural pole, principles of exclusion, contradiction and identity are predominant while the verbal schema assigned to it is that of distinguishing. This pole depicts a heroic struggle as part of an active lifestyle meant to counter the anxiety of time and the threat of death. Simple blended families do not have a common adopted child or a child born from the union of the new parents. Synthetic structures (originally named systemic structures) are distinguishable as a balanced coexistence of the schizomorphic/heroic structural pole and the intimate / mystical structural pole. They link the opposites in a rhythmical or cyclical manner. The Buddhist vision of interdependent co-production of all things, the circumference of the Taoist yin and yang, the coincidentia oppositorum of the Alchemists, the cross also, with its vertical and horizontal axes, are good images of harmonizing opposites. Triangulations can be healthy or unhealthy. When unhealthy in blended families, they are represented by loyalty conflicts coming from covert coalitions forming between various members within the stepfamily and with the former family due to undisclosed information targeting a family member (like an added-on stepparent with no children) which foster unhealthy alliances. References Abignente, G. (2004). Les racines et les ailes. Ressources, tâches et embûches de la famille. Bruxelles: De Boeck. Afifi, T.D. (2003). Feeling caught in stepfamilies: Managing boundary turbulence through appropriate communication privacy rules. Journal of Social and Personal Relationships, 20, 729-755. Anderson, J.Z., & White, G.D. (1986). An empirical investigation of interaction and relationship patterns in functional and dysfunctional nuclear and step families. Family Process, 25, 407-422. Baxter, L.A., Braithwaite, D.O., & Nicholson, J.H. (1999). Turning points in the development of blended families. Journal of Social and Personal Relationships, June, Vol. 16(3).

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Paloutzian, R.F., & Park, C.L. (2013). Recent progress and core issues in the science of the psychology of religion and spirituality. In Paloutzian R.F., & Park, C.L. (Eds.), Handbook of the Psychology of Religion and Spirituality (pp. 3-22). New York: the Guilford Press. Papernow, P.L. (1984). The Stepfamily Cycle: An Experiential Model of Stepfamily Development. Family Relations (Remarriage and Stepparenting), 33(3), (Jul.), 355-363. doi: 10.2307/584706 Papernow, P.L. (1993). Becoming a stepfamily: Patterns of development in remarried families. New York: Taylor & Francis. Park, C.L. (2013). Religion and Meaning. In Paloutzian, R.F., & Park, C.L. (Eds.), Handbook of the Psychology of Religion and Spirituality (pp. 295-314). New York: the Guilford Press. Park, C.L., & Fenster, J.R. (2004). Stress-related growth: Predictions of occurrence and correlates with psychological adjustment. Journal of Social and Clinical Psychology, 23, 195-215. Redekop, V. (2002). From violence to blessing: How an understanding of deeprooted conflict opens paths to reconciliation. Ottawa: Novalis. Rovers, M. (2013). Conference “Family Changes” in Relationships Matters 20122013 series presented on March 22, 2013. Ottawa, St-Paul University. Rovers, M. (2015). Conference “Blending Families” in Relationships Matters 2014-2015 series presented on April 30, 2015. Ottawa, St-Paul University. Sauzède, J.-P., & Sauzède-Lagarde, A. (2005). Former une famille recomposée heureuse. Comment faire pour que chacun trouve sa place. Paris: InterEditions. Scanzoni, J., & Marsiglio, W. (1991). Wider families as primary relationships. Marriage & Family Review, 17, 117-133. Schweibel, A.L., Fine, M.A., & Renner, M.A. (1991). A study of perceptions of the stepparent role. Journal of Family Issues, 12, 43-57. Statistics Canada 2011 Census. Being a parent in a stepfamily: A profile. The number of parents in complex stepfamilies is growing… Consulted September 27, 2015. http://www.statcan.gc.ca/pub/89-650-x/89-650-x2012002eng.htm#a3 Stewart, S.D. (2007). Brave new families: Diverse paths toward stepfamily living. London: SAGE Publications. The Stepfamily Foundation. (2015). Stepfamily Statistics. http://www.stepfamily.org/stepfamily-statistics.html. Consulted September 27, 2015 Visher, E.B., & Visher, J.S. (1978). Common problems of stepparents and their spouses. American Journal of Orthopsychiatry, 48, 252-262. Visher, E.B., & Visher, J.S. (1996). Therapy with stepfamilies. New York: Brunner/Mazel Publishers. White, L.K., & Booth, A. (1985). The effect of marital disruption on child’s attachment to parents. Journal of Family Issues, 6, 5-22. Whitsett, D., & Land, H. (1992b). Role strain, coping, and marital satisfaction of stepparents. Families in Society, 73, 79-92. Xiberras, M. (2002). La pratique de l’imaginaire. Lecture de Gilbert Durand. Québec: Les Presses de l’Université Laval.

Chapter 12

Safe at Home? About Incest and Spirituality Karlijn Demasure & Rejoice Hoedoafia When Adjoa was 10 years old, she felt abandoned because her mother had left the marital home. After a short time, her father remarried. Her stepmother became pregnant, and the day she went to the hospital to give birth, her father came back from work late at night, entered her room and asked her if she had a boyfriend. She answered that she did not. He then said that he would teach her sex before someone else would touch her. Her father ordered her to take off her clothes and started touching her breasts. When she tried to resist him, he put a pillow covering her face and had sex with her. She was 11 years old. This became an almost daily ritual even when the stepmother returned home with the baby. Anytime he had sex with her, he threatened her, saying that if she disclosed the sexual relationship, he would kill her. Adjoa’s stepmother expected her to do the cooking and caring of the house. Her stepmother also left her baby sister in her care while she went to work. In addition to Adjoa’s abuse by her father, her stepmother also received her share of verbal and physical abuse. Adjoa’s father beat her, justifying his actions using all kinds of reasons: The food was too warm or too cool; the child was crying, or a friend visited, etc. One day, as Adjoa could not take it anymore, she decided to go to see the priest at her parish church to confide in him the ordeal she is living in. However, the priest did not believe her. He said that, because her father was an active, committed and respectable member of the parish, he could not possibly be abusing her. The priest asked her if her mother was instigating her to tell stories to tarnish the image of her father. From then on, Adjoa became mistrustful of religious people and wondered about the presence of God in her life, since He did not do anything to stop the abuse. She then felt she had to conclude that she must have done something wrong and was now punished for that. At the age of 16, she felt strong enough to disclose the abuse, and reported it to the police. To flee from the anger of her father, she left home and went to stay with her uncle who lived in the city. However, her father threatened the uncle so badly that he asked the girl to leave. Having no place to go, she had to return home where her father forced her to withdraw her statement with the police. The sexual abuse started all over again and whenever she tried to resist her father’s abusive contacts, he beat her until she submitted to the abuse.

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Definitions The Definition of Incest Adjoa is abused by her father. This is a case of incest that fits the definition of B. J. Sadock & V.A. Sadock (2007) who define incest as the occurrence of sexual relations between close blood relatives. However, A.N. Groth, (1978) defines incest more broadly: For example, sexual relations between stepparents and stepchildren or among step siblings are considered to be incestuous, even though no blood relationships exist. The crucial psychological dynamic is the family relationship (Sgroi, 1982). Next to this psychological definition, one can also define incest from a legal point of view. From this perspective, incest is a sexual relationship between family members for whom legal marriage is forbidden (Hayez & de Becker, 1997). Incest can take place between two adults, two children, or between an adult and a child. In this chapter, we are interested in discussing incest between an older person and a child. Marvasti defines incest as “any kind of sexual activity between a child and a parent surrogate or older sibling, which is for the purpose of sexual gratification and sexual needs of the offender” (Marvasti, 2004, p.4). This definition is broad since it might include everyone who is in a parental role such as educators in an institution. By doing so, he loses the family context. Marvasti uses the term “child” while we prefer “minor”. We define minor as a pre-adolescent child and post adolescent youngster, as well as a mentally disabled person who may be a young person or adult. The incestuous abuse refers to the sexual relationship between an adult and a minor as well as the relationship between an older sibling and a younger sibling. The latter is also an act of abuse if the age difference is more than 5 years, because in these cases the power differential has become too big to speak of sexual relationships amongst peers. Furthermore, Marvasti’s definition focuses on the sexual gratification of the perpetrator. Yet, sexual exploitation of children or youth always includes an abuse of power because of the dominant position of the offender. In the presented case, the same power dynamic also plays a role in the father’s attitude toward his second wife, because he beats her, which puts her in a very submissive position. To make clear this aspect of domination and dependence, we will use the term abuse. Not only are the words, actions and gestures abusive, the threat to commit abuse

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is considered to be abuse as well, because it evokes similar feelings of overwhelming fear and powerlessness. In this contribution, we define incest as a specific form of sexual abuse of minors that occurs within a family structure. The older person uses the power advantage that s/he has over the minor to convince or to coerce him or her into sexual activities. CSA (child sexual abuse) concerns any sexual activity (words, gestures and actions), or clear initiative to do so. The Definition of Spirituality A first way to address spirituality is to focus on the experience of a person. Spirituality then has to do with the experience of the mystery of life that transcends a person. Although it cannot be verified empirically, the fruits of it can. Often, what transcends is called the sacred (Pargament, 2007). The experience of the sacred becomes the source out of which one organises his or her life (De Dijn, 2001). While this first group of definitions refers to the experience of the exceptional, spirituality can also be identified in a more conceptual manner because it also refers to the way in which people answer the fundamental questions of life such as suffering, beauty, and evil (Ganje-Fling, & McCarthy, 1996). This search for meaning at the same time leads to answers with respect to the identity of the person and his or her relations with the other and the world. For religious people the relationship with God provides meaning, whereby the openness to others also becomes an openness to the Other. Finally, spirituality becomes manifested in the way a person integrates his or her life by orienting it towards the most important value (Gall & Guirguis-Younger, 2011; Waaijman, 2000). Consequently, ethics belongs to the realm of spirituality as well, since it is rooted in it. Spirituality and religion have several characteristics in common. Both give meaning to life and offer consolation, both include an ethical approach etc. However, they are not synonyms. In religion, a person establishes a relationship with the sacred, which in several religions is called God. The relationship can take shape through the Scriptures, as is the case in Christianity, Judaism, and Islam. But a direct relationship with God is also possible as stated through the life and the writings of the mystics. Because of the latter, we do not include the organisational aspect of religion as central to the definition.

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The transcendent reality is sacred and everything that is related in a special way to the sacred becomes sacred as well. This includes marriages, certain spaces (e.g. Lourdes) and times (e.g. Christmas), but also life as such and children. In conclusion: Spirituality and religion refer to the mystery of life. They are at the root of the worldview, and answer the ultimate questions about the meaning of life and death, give sense to life and underscore ethics. In religion, a person establishes a relationship with God. Adjoa is a Christian, raised in a Christian family, and that is why she went to see the priest, who clearly knows the family, since he states that her father is a good parish member. Adjoa knows that what is happening in her family is against Christian values, and by talking to the priest, she has hoped that he would protect the most vulnerable and put an end to the abusive situation. But the “representative of Christ on earth” does not act upon the disclosure, so she starts to doubt about the presence and meaning of God in her life. Causes of Incest C. Lévy-Strauss stated that incest is a universal prohibition; it takes place in all cultures in different forms. While in Western cultures many researchers focus on the abuse committed by the father, in other cultures such as African cultures, the uncle (the brother of the mother) can be held responsible for many cases of abuse since he has more influence in the family than the biological father. Or in poor families, kids can be sent to extended family in the city where they can get a good education. However, in return they are asked to serve the family that receives them. In some cases, one or more family members abuse those children. Because of the various forms of intrafamilial abuse, depending on culture, discussing causes is not an easy matter. Individual characteristics. One way to find an answer to the question of what leads someone to sexually abuse a child is to classify offenders and thus look at individual characteristics (Demasure, 2015). A.N. Groth distinguished two groups of perpetrators: The fixated and the regressed pedophiles. Fixated offenders are usually considered to be pedophiles (Groth, 1982). Originally, incest-offenders were not included in Groth’s typology. This led critics such as R. Conte and J. Frenken to sort incest offenders under situational or regressed perpetrators (Conte, 1985; Frenken, 1997). This type of abuse considers the cause of abusing the

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child as the consequence of a crisis such as e.g. loosing a job: “Regression is defined as a temporary or permanent appearance of primitive behaviour after more mature forms of expression have been attained, regardless of whether or not the immature behaviour was actually manifested earlier in the individual’s sexual development” (Groth, 1978, p. 8-9). Groth (1982) argues that an incest perpetrator could belong to either of the two groups but that, in his clinical experience, 90% belong to the regressed offenders. In the case of a fixated incest offender, the dynamics of the individual are of such paramount importance that the family dynamics are of little or no relevance. On the contrary, the relationships between the family members, the structure of the network, the context and the situational events are of the utmost importance with regressed offenders. The FBI refined the model developed by Groth, but did not refer explicitly to the group of incest offenders. The regressed offenders are part of the group that is called situational offenders and which include: The regressed, the morally indiscriminate, the sexually indiscriminate, and the inadequate perpetrators. (Dietz, 1983). Whether those who commit incest have to be included in the typology based on fixated and regressed offenders depends on the answer to the following question: Are the dynamics of the regressed and incest offenders the same, or could they fall under different categories to even be a mixture of these categories? The DSM-5 gives state of art diagnostics of pathologies. Its definition of pedophilia1 (American Psychiatric Association, 2013) does not consider incest offenders as a separate category, but only as a possible form of pedophilia. It is advised to distinguish those offenders who are exclusively incest perpetrators. In sum, this overview suggests that some incest offenders fit the diagnosis of pedophilia, but others do not. Amongst the incest offenders, Groth (1982) distinguishes the passive and the aggressive offender. The passive-dependant offender behaves towards his wife as a dependant child. He turns to his daughter if his 1

 DSM V : Definition of pedophilic disorder (302.2, F65.4) diagnostic criteria : A. Over a period of at least 6 months, recurrent, intense sexually arousing fantasies, sexual urges, or behaviours involving sexual activity with a prepubescent child or children (generally age 13 years or younger). B. The individual has acted on these sexual urges, or the sexual urges or fantasies cause marked distress or interpersonal difficulty. C. The individual is at least age 16 years and at least 5 years older than the child or children in Criterion A. Note: Do not include an individual in late adolescence involved in an ongoing sexual relationship with a 12- or 13-year-old. Specify whether: Exclusive type (attracted only to children); Nonexclusive type; Specify if: Sexually attracted to males; Sexually attracted to females; Sexually attracted to both; Specify if: Limited to incest

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wife does not fulfil his needs and desires. That is what happens with the father of Adjoa. He turns to his daughter because his wife is at the hospital and also afterwards because she is not sexually available. The child has then the duty to fulfill the mother’s role. The aggressive dominant perpetrator, on the other hand, chooses an immature wife. This creates for him the opportunity to be in a dominant position, which also gives him the right to dispose of all the members of the family on a sexual level. Both types of offenders have the impression not to have control over their lives; they feel isolated, are anxious, depressive and lack selfesteem. They also lack empathy and their immaturity lies at the basis of the sexual abuse of children (Groth, 1982). In a metanalysis study on incest, with a focus on the fathers as offenders, Meyer-Williams & Finkelhor (1990) also identified the two types of offenders Groth has identified. They also identified the anxiety, the depression, and the lack of empathy the offender suffers from. 20% of incest offenders have a history of being sexually abused themselves. The relationship with their parents is characterised by neglect or rejection, and between the partners by a lack of respect, trust, autonomy, and intimacy. Many partners of incest offenders are victims of humiliation or violence as well, just as we could see in the family of Adjoa: Her stepmother is also being abused. Many incest-abusing fathers are not able to feel a bond with their children. They often have been raised in a dysfunctional family themselves. Systemic approaches. Another way to determine the causes of incest is to look at family structures and thus choose a systemic approach. Some family patterns seem to be more vulnerable to abusing children than others. Families in which incest of minors may occur tend to be where parents are both physically and emotionally absent. Therefore, there is inadequate nurturance in the family that sets the stage for feelings of loneliness, dependency, and neediness in everyone. This is the situation of Adjoa. Her mother left the house and her stepmother only sees her as someone who can help her do work. Once the child is born, she turns to the child, and the father of the child, as well as Adjoa, are of little importance to her. This condition renders Adjoa vulnerable to victimisation. Her father turns to the practice of behaviours aimed at satisfying his needs without regard for others (DiGiorgio-Miller, 1998). J. Herman (1981) found that incest between father and daughter is associated with families that hold strong traditional values and a patriarchal system in which children have to serve the adults and the females

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have to serve the men. Those families often have an extremely rigid power structure and a resistance to change. Although these beliefs do not always seem to characterise families where extended family members abuse children, this family structure should not be ignored (Alexander & Lupfer, 1987). Dysfunctional families (Adler & Schutz, 1995) are characterised by extreme physical reactions to ordinary activities and the volatile emotional atmosphere of the home. They are characterised by neglect, abandonment, and substance abuse. The father may be dominating and authoritarian while the mother is fearful, passive, devalued, silenced and maltreated (Abrahams & Hoey, 1994). Also, the father may be described as a violent, verbally abusive, and sadistic man who restricts his family’s activities (Ascherman & Safier, 1990). In addition, minors are considered a possession that can be used for the gratification of the owner (parent). The family Adjoa is living in can be characterised as dysfunctional, although there are also some elements present that belong to the “chaotic family.” In a chaotic family, there is little emotional connection and rules are arbitrarily applied (Bruinsma, 1994; Bruinsma 1995). In a chaotic family, parents often give up their responsibility to minors who become “parentified” (i.e. taking on a parenting role) and offenders may take advantage of the situation. This family is characterised by problems spanning generations, relatively low social economic standing, as well as poor functioning of individual family members and the entire family. Children in chaotic families are usually left to take care of themselves, without adult supervision, are vulnerable to abuse, both inside and outside of the family (Courtois, 1988). Children who are abused by extended family members are often raised in a chaotic family because of the lack of protectiveness by their own biological parents (Alexander & Lupfer, 1987). In the enmeshed family, boundaries between family members are typically too weak. There may be little differentiation between the individuals, and little value is placed on individual needs, attributes, and feelings. On the contrary, they may have overly firm boundaries between themselves and the larger society. Enmeshed families are often closed and isolated from the influence of society and from its censure. This makes it more difficult for incest victims to disclose incest abuse, which is a part of the family secret. Social isolation as well as lack of social skills have been noted and confirmed repeatedly as characteristics of child molesters in general (Araji & Finkelhor, 1986), in particular for perpetrators in incestuous families.

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Sexualised families have a family climate where there is an open sexual behaviour and talk between family members including exposure to pornography, nudity, or to sexual acts between parents or toward children (Worling, 1995). The opposite extreme is sexual rigidity and a lack of discussion on any sexual topic. This situation may result in minors who are uninformed about sex. The expectations of the family with regard to the incest, and in an environment where mixed messages are communicated in the home with regard to appropriate sexual behaviour, might lead to transgressed behaviour with the children. While this overview might be helpful, defining a family to be at risk of abusing children is not sufficient to jump to the conclusion that abuse is actually happening. The disclosure by a child is of much more importance even if it belongs to a family that does not fit any of these descriptions. However, an unhealthy family structure calls for social or pastoral care in order to prevent any kind of abuse from happening.

Impact of Sexual Abuse Sexual abuse has an impact on all levels of the human person and on all persons who are part of the family where the abuse is happening. Physical impact on the victim. Survivors of incest may complain about different kinds of illnesses and psychosomatic problems even during their adult lives. The most common physical effects of incest include: Stomach problems and difficulty breathing; asthma and respiratory ailments; muscular tension and pain, back pain, migraine and chronic headaches; incontinence and heightened susceptibility to illness and infection; and low pain threshold. In addition, skin disorders and ulcers are ailments that are stress-related and may signify unresolved childhood sexual abuse issues. Chronic hyper-arousal in an incest trauma survivor might lead to a gastrointestinal disorder, chronic and diffuse pain, especially abdominal or pelvic pain (Irish, Kobayashi & Delahanty, 2010; National Society for the Prevention of Cruelty to Children, 2015; Leserman, 2005; Scarinic, 1994). Psychological impact on the victim. Incestuous experiences are associated with different symptoms that manifest throughout the victim’s life. In this contribution, we will elaborate on those psychological issues that also have importance for spiritual life and “meaning.” Ward & Lundberg-Love (2006) maintain that incest survivors’ personal growth

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and development are also affected psychologically, behaviourally, and cognitively.2 Although a trauma has far more consequences than Post-Traumatic Stress Disorder (PTSD), incest survivors commonly report PTSD. The tree hallmarks of PTSD are symptoms of arousal, avoidance, and reexperiencing. As the term states, this disorder finds its roots in the experience of a trauma. B. Van der Kolk (1987, p. 291-307) defines trauma as “the impact of experiences that overwhelm both psychological and biological coping mechanisms:” We would add spiritual coping mechanisms. Coping mechanisms are means to deal with stress. In the case of a traumatic event, the victim has the impression that his or her resources to cope are insufficient. A child often responds to events such as incest with intense fear and helplessness. It is difficult for a child to resist the adult who has power over the child or youngster. In Adjoa’s case, she has no place to go and the threats uttered by her father make her feel helpless. She might re-experience the event through thoughts, perceptions, and dreams, even when the abuse has stopped. Furthermore, she might try to avoid stimuli associated with the events or triggers that can remind her of the abuse. Potentially, Adjoa might avoid the house where the abuse has happened or even avoid meeting her sister because the abuse began when her sister was born. Adjoa might be experiencing “betrayal trauma”: A phenomenon that occurs when trauma is created by the simple fact that someone in a position of trusted authority (a parent, for instance) betrays the trust of a child (as in sexual abuse), such that the trauma is actually related to the betrayal as well as the traumatic event itself (Freyd, 1996). The framing of post-traumatic stress disorder as a pathology is criticised by B. Burstow in her article “Toward a radical understanding of Trauma and Trauma work”. She strongly suggests replacing psychiatric and medical language such as “symptoms, diagnosis, and recovery” because they put the persons who have been traumatised within a framework that does not do justice to their life. The medical framework is very powerful and can pathologize survivors. This sometimes leads to medical and psychiatric interventions that do not always please the survivors. 2  Yet other consequences are possible such as dissociative patterns, repression, denial, and aggression, sexual problems, eating disorders, and suicidality. Further, learning difficulties, prostitution, revictimization, poor parenting, and relationship problems and increase in the likelihood of becoming a perpetrator have been noted. (Browne & Finkelhor, 1986; Courtois, 2010; Hall & Hall, 2011; Herman, 1981; Kendler, Bulik, Silberg, Hettema, Myers, & Prescott, 2000; Molnar, Buka & Kessler 2001; Paludi, 2011; Russell, 1995).

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The theory of J. Bullman (1992) can be helpful to approach the consequences from a more spiritual point of view. From her perspective, a traumatic event shatters one’s fundamental assumptions about him or herself, the world, and the other. A child normally considers the world to be benevolent and to have meaning and she or he has a positive meaning about the self. The child considers herself or himself to be worthy. Those basic assumptions are shattered by the abuse. Survivors of incest often blame themselves for the abuse because they integrate what the perpetrator is projecting on them and take on the fault of being the initiators of the abuse. Also, Adjoa concludes that she must be the cause of the abuse. She believes that, because God does not intervene, there is no other explanation left. Apparently, she is a “bad girl” and must be punished. After this self-blame ensues, victims feel ashamed and defiled and think that others can see what has occurred (Demasure, 2010 & 2014). Some victims may experience sexual gratification, which intensifies their shame, and self-blame. The survivors feel the need to hide as an expression of shame. Shame also arises when the survivors judge their actions as failures concerning standards, rules, and goals that are valid in their society (Lewis, 2000; Pattison, 2000). The image of the self as being worthy is shattered. Survivors of incest are likely to struggle with the issue of trust and their desire to rely or depend on adults in the family may be shattered. In the case of Adjoa, her father whom she trusted before, became a perpetrator and her stepmother did not react at all, although she was most probably aware of the abuse. Even the priest could not be trusted since he did not believe Adjoa and blamed her for telling “such things” about her father. As a consequence, victims often internalise negative beliefs regarding trust. This loss of a trusted relationship with emotionally significant persons (Cole & Putnam, 1992) is negatively affecting the victim’s capacity to trust again, due to the fact that the usual source of emotional support for the child has become the cause of the child’s suffering. The innocent child assumption that the world is benevolent has been shattered because it has taken on “the face, the attitude, the demeanour of the abuser” (Flaherty, 1992, p. 41). These negative evaluations can immerse the entire self-concept of the survivor. Victims of sexual abuse suffer from the violation of their dignity (Kirkengen, 2001; Pettersen, 2009). Delays in disclosure of incest are associated with high levels of depression (Ruggiero, Smith, Hanson, Resnick, Saunders, Kilpatrick, et al. 2004). Also, not being believed after disclosure, or not acting when hearing about the disclosure, as is

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the case with Adjoa when she tells the priest about the abuse, will have negative consequences. Depression is the most commonly reported psychological symptom in survivors of incest. It may take different forms such as negative thinking, feelings of hopelessness, and social withdrawal. (American Psychiatry Association, 2013). The assumption that the world is meaningful, and is a good place to live in, has been shattered. Impact on the family. Incest has the power to affect every member of the family and support system upon which the victim relies because the dynamic of the family has suddenly changed (Brohl & Potter, 2004) and is damaging not only to the victim but also to the entire family. The role for the non-offending parent figure has changed and any other children in the family must also make adjustments. The way the family perceives the offender may be very different from how the victim views the offender. If the family shows esteem, love, and loyalty towards the offender, the child often will not disclose the sexual abuse, or if the family finds out about the sexual abuse, the survivor may not be believed, especially when the offender is primarily responsible for the welfare of the family’s financial security. Some of the non-offending parents deny the abuse or turn a blind eye to it, like Adjoa’s stepmother. She does not act at all. For others, it is a traumatic experience. They may experience numbness, shock or disbelief, as immediate responses to their child’s victimisation (Brohl & Potter, 2004). They may feel guilt, shame, grief, and anger. Some of these emotions initially can be a motivating fact: Not only to report the incest, but also to remove the offender from the family environment. Often, the non-offending parent blames himself/herself for not protecting the child from the perpetrator. Mothers who bring a boyfriend or stepfather into a child’s life tend to blame themselves, as their (new) husband is the perpetrator of sexual abuse rather than being a father to her children (Johnson, 1992). Often, the non-offending parent must grieve not only for the child victim but also for the disappointment and loss of his or her relationship with the offender. Incest affects siblings as well. They often feel distressed and torn in many different directions by the incest (Piazza & Lundberg, 2010). Their sense of security and trust is also threatened by the sexual abuse of their sister or brother. When a victim discloses an incest relationship, the siblings may be somewhat ignored because much of the attention is directed toward the victim (Baker, Tanis, & Rice, 2001). This disparity can lead to feelings of resentment toward the victim.

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Sexual abuse within the family may put a strain on the relationships among members of the family at the moment of disclosure. Some family members will tend to take sides. Some will believe the child and others will take the side of the offender. The family struggles with the dilemma of who is telling the truth, the victim or offender (Heitritter & Vought, 2006). This “divided loyalty” (Courtois, 2009, p. 18) may lead to the fact that victims of incest often retract their statement when they feel responsible for breaking up the family (McVeigh, 2003). They also may take back disclosure because they are afraid of rejection and the sense of belongingness in the family. Adjoa, for instance, felt she must take back her statement because there was no place to stay other than in her father’s house. Sometimes siblings know what happened, but they do not talk about it because they think the other siblings do not know, although most of the time they do. This situation is pathologising in the family and in some cases can lead to a suicide of one of its members (Neuburger, 1977). Impact on spirituality: More research is needed. There is still a lack3 (Walker, Reid, O’Neill & Brown, 2009) of research on the spiritual and theological consequences after CSA as well as the risk and protective factors of spirituality and religion regarding sexual abuse. Therefore, several authors include in their literature review the spiritual consequences after other forms of trauma (e.g. a natural disaster, or intimate partner violence) (Pargament, Smith, et al. 1998; Smith, 2004) and suppose that the consequences are identical or similar for CSA. More research has been done in the field of clergy sexual abuse after the scandals in the Catholic Church. But asking whether the consequences of incest and clergy sexual abuse are the same is relevant and should not be underestimated. Further, studies often link the spiritual attitude to psychological well-being, stating that positive religious coping is helpful for mental health (e.g., Doxey, Jensen, & Jensen, 1997; Elliott, 1994; Gall, Basque, Damasceno-Scott, & Vardy, 2007; Pargament, 2007; Walker, McGregor, Quaglian, Stephens, & Knodel, 2015). It is even more difficult to find research within the field of spirituality and theology that answers the question: “For whom, drawing on what particular expressions of religion and spirituality, at what points in the recovery process, and on the basis of what outcomes, is religion or 3  D. Walker et al (2009) identified in 2009 34 studies of CSA as they relate to spirituality and religiosity. However, some studies refer to emotional or/and physical abuse while some refer to sexual abuse by a member of the clergy.

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spirituality more likely to be helpful or harmful?” (Fallot & Blanch, 2013, p. 375). Spiritual struggle not only has consequences for mental health, it also possibly leads to a spiritual or a religious trauma. A spiritual trauma refers to shattered basic assumptions that are spiritually and psychologically damaging to the person. Trauma occurs if the relationship with God is damaged or if one interprets the events from a perspective of anger with God (Imbens & Jonker 1985). Adjoa interprets the abuse as a punishment by God. Although this helps to make sense out of the abuse, it is a negative way of coping, leading to a God image that does not favour well-being or a mature faith. Specifically, some theological interpretations (cognitive distortions) compound the suffering of survivors and block the healing process. Specifically, some theological topics can cause spiritual struggle, such as the appeal to forgive. This can add to the problems of survivors, since some do not want to forgive or just cannot do it (Martínez de Pisón, 2014). The insistence on the sinfulness of human beings can also cause much pain, since victims of sexual abuse are not those who have sinned, but those who have been sinned against (Coulter, 2001). More studies are needed on how to remediate certain interpretations in theology, religious education, and church life, which are not helpful to heal, find new meaning out of the ashes of trauma, and to grow spiritually4. The family and spiritual issues. To our best knowledge, there is only scarce or no research on religion, meaning, and spirituality of the family as a whole or on its members, other than the victim, and on the spiritual struggle or growth of the family after the abuse has taken place. However, we can add a few issues drawn from our own experience of working many years as pastoral workers with survivors of sexual abuse (Demasure, 2007). To make the abuse possible by convincing the child, or to justify abuse, some perpetrators make use of religious arguments (Bottoms, Nielsen, Murray, Filipas, 2003; Mahoney, 2006). We call this religion-related abuse. They refer to the commandment that children should honour their parents, the commandment being interpreted as the obligation to obey, which enforces parental authority. If the child is to obey in all circumstances, he or she also has to submit to the abuse. Further, God might be presented as a punitive God, sending to hell those who are “bad children.” The parent then has to punish the child (sometimes in the name of God) in order to avoid the final punishment. 4

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In this case, sexual abuse is interpreted as a punishment. Finally, in some families, sacrifice as such is valued as a way to earn eternal life; Jesus, for instance, who suffered on the cross, stands as an example to be followed. Sexual abuse is the suffering one has to undergo in order to get resurrected just as Christ did. Those interpretations are of course signs of an unhealthy theology, but children are not able to contradict them. This alludes to the importance of catechesis in this circumstance. Children need to be educated with an image of a loving God. They further need to learn that they should “follow” Christ and not “imitate” him. They then would know that God would never inflict such a punishment on them and that God does not want us to suffer. When the whole atmosphere of the family is incestuous, the family members can be considered secondary victims. They show symptoms that are very similar to those of the survivor. They also ask why the abuse is happening in their family, how people can be trusted and why God is not intervening. Similar to the survivor, they feel helpless because they do not know how to put an end to the abuse. Brothers and sisters may fear the abuse is also going to happen to them as well. Siblings normally do not intervene and keep silent. That makes them in their own eyes partners in crime, which raises also for them the question of guilt and forgiveness. The position of the mother is more complicated, since she sometimes is indeed a partner in crime by suggesting that the father engage sexually with her daughter. In other cases, she might be very well aware of the situation; but she does not intervene because of various reasons, such as fear of being hit herself by her husband, like in the case of Adjoa’s mother. In this case, she is considered a secondary victim as well as coresponsible for the abuse, and thus a co-perpetrator. The topic of forgiveness is crucial for the life of the family. The eventual silent collaboration with the perpetrator by the mother, if the father is the perpetrator, is very upsetting for the child. Further, the anger that the family members might display at the disclosure of the abuse is an injustice done to the victim, although many reasons can be enumerated to explain their behaviour. Indeed, many times the family falls apart: The police coming in, the neighbourhood judging the family, the tribunal, and prison. All of those are very disturbing elements. The negative behaviour of the family members may make the victim wish that she or he had never spoken. The guilt that the victim is taking on is not only the internalization of what the perpetrator has made her or him believe,

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but also of what the other family members tell her or him because of the disclosure. While the victim is feeling guilty, in fact, she or he is not guilty. She or he is the one who has to forgive her family members, if she or he is able to do so. The Spiritual Struggle As noted, spirituality/religion might come under pressure because of the abuse, or might be a protective factor. In an overview of the literature, Walker et all. (2009) mention that the majority of studies indicate a decrease or damage to a person’s spirituality or religion. In the first case, the traumatic experience of sexual abuse attacks the sense of meaning that life had before. It also raises questions about the balance between good and evil and includes feelings of emptiness and betrayal, as well as a sense of guilt and shame. (Smith, 2004, p. 233-234). Spiritual struggle, such as being angry with God, often leads to a decrease in mental health (Fater, Mullaney, 2000; Kane, Cheston, Greer, 1993; Kennedy & Drebing, 2002; Mart, 2004), but it also leads to a spiritual malaise. Worldviews and values have to be revisited and the meaning of life has to be reexamined. Sometimes as a child or an adolescent, this process gets started, but in many cases a person only embarks this quest for meaning once he or she has become an adult. Spiritual difficulties manifest themselves on 4 levels: Spiritual safety and trust; spiritual power and control; spiritual self-esteem; spiritual intimacy and connection (Murray-Swank, & Waelde, 2013). Spiritual safety and trust refers to the fact that many survivors do not trust anymore. This topic refers to the first assumption mentioned by J. Bullman (1992): That the world is benevolent. This belief holds that the world is a good place to live and other people are basically good, helpful, and caring. Religiously translated, it refers to a trustworthy God (Ganzevoort & Visser, 2007). However, due to the abuse, the relationship with God is likely to be affected. Just as the victims of incest lose their trust in human beings, they also lose their trust in God. The image of God as a Father in Christianity refers to a protective God, who is close and trustworthy. However, being abused by one’s father makes calling God “Father” very disturbing (Imbens & Jonker, 1985). This often results in a more distant relationship with God (Kennedy & Drebing, 2002; Reinert & Edwards, 2009; Rossetti, 1995, Walker, McGregor,

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Quaglian, Stephens & Knodel, 2015). Victims of incest often leave organised religious denominations that their abusive father belongs to (Kane et al. 1993). The reaction of the priest for the victims asking for clergy advice is very important as well. A negative reaction might lead to departure from the religious community. We do not know whether Adjoa left the community, but she surely must have felt disappointed since the priest defended the perpetrator and not the victim. The issue about power and control refers to the second assumption, which holds that the world is meaningful. Being meaningful means that one must be able to answer the question “why?”: Things do not happen at random, because coincidence can ruin the idea of meaningfulness. There is a sense of order and comprehensibility when “why?” can be answered. Religiously translated, this assumption refers to God being in power, being almighty, so that everything gets a meaning in the bigger plan of God. But for survivors of incest, the questions “Why does God allow this to happen?” and “Why is God not supporting me in the pain I suffer?” are very difficult to answer (Nadeau, 2012). Victims question the issue of an almighty God because He did not intervene, although they might have been praying a lot to make the abuse stop (Flaherty, 1982). Adjoa is not an exception while raising this question. If she does not want to lose her faith in God, she can only conclude that He is punishing her for being bad. That brings us to the third assumption, which refers to the self. The person is worthy also in God’s eyes. God will take care of the person, nothing bad will happen if one follows His commands. Yet, also the spiritual self-esteem has been touched negatively. The child integrates the projections of the perpetrator and considers herself or himself as sinful. The interpretation that the abuse is God’s punishment for sin is another way of blaming the victim and reinforces guilt and fear. The survivor considers herself or himself not being worthy of the love of God. A spiritual disconnection is the consequence of the shattered assumptions and it becomes apparent in the difficulty to pray. It is not only the conviction that one is sinful or that God has abandoned the survivor that plays a role in these spiritual difficulties. Praying also becomes difficult because the silence gives space for the intrusions to torment the victim (Crisp, 2010). Spiritual disconnection can also lead to survivors leaving the church, as they are disappointed in the way church members have reacted to the disclosure. As in the case of Adjoa, many people cannot believe that what the child tells is true.

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Spirituality as a Source of Strength and Meaningful Post-traumatic Spiritual Growth The abuse shatters the basic religious assumptions, but on the contrary, spirituality can play a positive role in the healing process and become a source of strength. It is important to make a distinction between what the person experiences at the moment of the abuse and what happens later on, over time. Trauma may initially ruin the spiritual or religious assumptions, but religious beliefs may contribute to a process of reinterpreting the event in a positive way. Consequently, they become a source of strength (Grossman, Sorsoli, & Kia-Keating, 2006; Schaefer, Blazer, Koenig, 2008). While survivors can show a decrease in several levels of their spirituality and religiousness, at the same time, an increase on other levels can become manifest. They can lose their faith in some aspects, such as God being in control of the world and, on the other hand, reporting an increase in seeing God as an active agent in their healing process (Walker at al. 2015). Resilience, as argued by some researchers, is associated with victims who may thrive in the face of traumatic events like incest. This resilience occurs because of their ability to cope with stressful situations and adapt to the environment in a positive way. Healing and resilience are very much linked to each other (Martínez de Pisón, 2014). For the religious coping to be positive, spiritual and religious interpretations and actions have to be based on positive values such as trust, hope and faith in a benevolent God and world (Pargament, Smith, Koenig, & Perez, 1998; Pargament, Zinbauer, Scott, Butter, Zerowin, & Stanik, 1998). A strong spirituality can lead to meaningful post-traumatic growth, which allows the survivor to become stronger (Ryan, 1998; Walker et al., 2009). It can give meaning in life and provide structure to create an ethical life. This is the case with some veterans, whereby they experience post-traumatic growth following war atrocities. However, a child does not have a mature and strong spirituality. This is why spiritual and religious care is necessary when the abuse is disclosed. Several survivors have reported, after therapy, that although they thought God had abandoned them during the abuse, they later realized that God had been with them all the way long: That He was present during the abuse, suffering with them (Nadeau, 2012; Walker et al. 2015). Some survivors also refer to a stronger sense of self as they might reinterpret their future as a mission, taking care of others’ safety or

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well-being: They turn tragedy into a triumph and derive meaning. They also might profit from enhanced empathy and a greater possibility to show compassion (Flaherty, 1992). Next to that, they also might show a greater appreciation for life (Frazier & Berman, 2008). Conclusion Although it is difficult to know exactly how many children are survivors of incest because of the taboo in many countries around this issue, we know that unfortunately incest is happening to many children in various cultures. Although the child who is abused is the primary victim, the sexual abuse within the family has a negative impact on all members of the family on various levels, including spirituality. Spiritual or religious damage often occurs to all positive basic assumptions a child normally has. The relation to the self, the other, the world, and God are negatively affected by the abuse. However, eventually spirituality and religion may become a source of strength in the healing process. The spiritual or religious tradition might help to reinterpret the event by giving meaning to it and God might become a source of consolation, security and power. Reflection Question 1) This chapter addresses the negative impact of child abuse on survivors, families, and their sense of spirituality and meaning. In what ways could a person transform their past child traumatic abuse experience—attitudinally or through their own actions—into the potential for growth or meaning? Glossary Chaotic family: Little emotional connection and rules are arbitrarily applied. CSA (child sexual abuse) concerns any sexual activity (words, gestures and actions), or clear initiative to engage in such activity. Dysfunctional families: Characterised by extreme physical reactions to ordinary activities and the volatile emotional atmosphere of the home.

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Enmeshed family: Boundaries between family members are typically weak. There may be little differentiation between the individuals, and little value is placed on individual needs, attributes, and feelings. Fixated offenders are usually considered to be pedophiles. Incest: A specific form of sexual abuse of minors that occurs within a family structure. The older person uses the power advantage that s/he has over the minor to convince or to coerce him or her into sexual activities. Regressed perpetrators: Attained mature forms of sexual expression, then temporarily or permanently exhibit more primitive behaviour. Sexualised families have a family climate where there is an open sexual behaviour and talk between family members including exposure to pornography, nudity, or to sexual acts between parents or toward children Spirituality and religion refer to the mystery of life. They are at the root of the worldview, and answer the ultimate questions about the meaning of life and death, give sense to life and underscore ethics. In religion, a person establishes a relationship with God. References Abraham, J., & Hoey, H. (1994). Sibling Incest in a Clergy Family: A Case Study. Child Abuse and Neglect, 18, 1029-1035. Adler, N., & Schulzer, J. (1995). Sibling Incest Offenders. Child Sexual Abuse & Neglect, 19(7), 811-819. Alexander P.C., & Lupfer S.L. (1987). Family Characteristics and Long-term Consequences Associated with Sexual Abuse. Arch Sex Behav., 16, 235-245. American Psychiatry Association (APA) (2013). Diagnostic and Statistical Manual of Mental Disorders. (5h Ed). Washington D.C: Author. Araji, S., & Finkelhor, D. (1986). Abusers: A Review of the Research. In D. Finkelhor (Ed.), A Source Book on Child Sexual Abuse. Newbury Park CA: Sage Publication. Ascherman, L.I., & Safier, E.J. (1990). Sibling Incest: A Consequence of Individual and Family Dysfunction. Bulletin of the Menninger Clinic, 54(3), 311-322. Baker, J., Tanis, H., & Rice, J. (2001). Including Siblings in the Treatment of Child Sexual Abuse. Journal of Child Sexual Abuse, 10, 1-16. Bogar, C.B., & Hulse-Killacky, D. (2006). Resiliency Determinants and Resiliency Processes among Female Adult Survivors of Childhood Sexual Abuse. Journal of Counseling and Development, 84, 318-327.

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McCauley, J., Kern D.E., Kolodner K., Schroeder A.F., DeChant H.K., Ryden J., et al. (1997). Clinical Characteristics of Women with a History of Childhood Abuse: Unhealed Wounds. Jama, 277, 1362-1368 Mc.Veigh, M.J. (2003). ‘But she didn’t say no?’: An exploration of sibling sexual abuse. Australian Social Work, 52, 116-126. Molnar, B., Buka, S., & Kessler, R. (2001). Child Sexual Abuse and Subsequent Psychopathology: Results from the National Co-morbidity Study. American Journal of Public Health, 6, 753-760. Murray-Swank, N.A., & Waelde, L.C. (2013). Spirituality, Religion, and Sexual Trauma: Integrating Research, Theory, and Clinical Practice. doi: 10.1037/ 14046-017 Nadeau, J.G., & Golding, C. (2012). Autrement que victimes, Dieu, enfer et résistance chez les victims d’abus sexuels. Montréal: Novalis. National Society for the Prevention of Cruelty to Children (NSPCC). (2015). Sexual Abuse Signs, Symptoms and Effects. http://www.nspcc.org.uk/preventing-abuse/child-abuse-and-neglect/child-sexual-abuse/signs-symptoms-effects/Access 16, May 2015. Neuburger, R. (1977). Le mythe familial. Paris. Paludi, M.A. (2011). The Psychology of Teen Violence and Victimization (2 volumes). ABC-Clio, LLC: Praegar. Pargament, K.I., Smith, B.W., Koenig, H.G., & Perez, L. (1998). Patterns of Positive and Negative Religious Coping with Major Life Stressors. Journal for the Scientific Study of Religion, 37, 710-724. Pargament, K.I., Zinnbauer, B.J., Scott, A.B., Butter, E.M., Zerowin, J., & Stanik, P. (1998). Red Flags and Religious Coping: Identifying Some Religious Warning Signs Among People in Crisis. Journal of Clinical Psychology, 54, 77-89. Pargament, K.I., et al. (2000). The Many Methods of Religious Coping: Development and Initial Validation of the RCOPE. Journal of Clinical Psychology, 56(4), 519-543. Pargament, K.I. (2007). Spirituality Integrated Psychotherapy. Understanding and Addressing the Sacred, New York: Guilford Press. Pargament, K.I., et al. (2008). Problem and Solution: The Spiritual Dimension of Clergy Sexual Abuse and its Impact on Survivors. Journal of Child Sexual Abuse, 17(3-4), 397-420. Pattison, S. (1998). Suffer Little Children: The Challenge of Child Abuse and Neglect to Theology. Theology and Sexuality: The Journal of the Centre for the Study of Christianity and Sexuality, 9, 36-58. Pattison, S. (2000). Shame. Theory, Therapy, Theology. Cambridge: Cambridge University Press. Pettersen, K.T. (2009). An Exploration into the Concept and Phenomenon of Shame within the Context of Child Sexual Abuse: An Existential-Dialogical Perspective of Social Work within the Settings of a Norwegian Incest Centre. Piazza, A.J., & Lundberg-Love, P.K. (2010). Adult Survivors of Incest: Psychological Sequalae and Treatment. In M.A. Paludi, & F.L. Denmark (Eds.), Victims of Sexual Assault and Abuse: Resources and Responses for Individuals and Families. Santa Barbara, CA: Praeger.

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Porter, R. (1984). Child Sexual Abuse within the Family. New York: Tavistock Publications. Poston, C., & Lison, K. (2001). Reclaiming Our Lives: Hope for Adult Survivors of Incest. Lincoln, NE: iUniverse.com, Inc. Pritt, A.F. (1998). Spiritual Correlates of Reported Sexual Abuse among Mormon Women. Journal for the Scientific Study of Religion, 37, 273-285. doi: 10.2307/1387527 Reinert, D.F., & Edwards, C.E. (2009). Attachment Theory, Childhood Maltreatment, and Religiosity. Psychology of Religion and Spirituality, 1, 25-34. Rice, M.E., & Harris, G.T. (2002). Men who Molest Their Sexually Immature Daughters: Is a Special Explanation Required? Journal of Abnormal Psychology, 111, 329-339. Rossetti, S.J. (1995). The Impact of Child Sexual Abuse on Attitudes toward God and the Catholic Church. Child Abuse and Neglect, 19, 1469-1481. doi: 10.1016/0145-2134(95)00100-1 Ruggiero, K.J., Smith, D.W., Hanson, R.F., Resnick, H.S., Saunders, B.E., Kilpatrick, D.G., et al. (2004). Is Disclosure of Childhood Rape Associated with Mental Health Outcome? Results from National Women’s Study. Child Maltreatment, 9, 62-77. Russell, D.E.H. (1995). Incestuous Abuse: Its Long-Term Effects. Pretoria: Human Sciences Research Council. Ryan, P.L. (1998). An Exploration of the Spirituality of Fifty Women Who Survived Childhood Violence. Journal of Transpersonal Psychology, 30, 87-102. Sadock, B.J., & Sadock, V.A. (2007). Kaplan & Sadock’s Synopsis of Psychiatry: Behavioral Sciences/Clinical Psychiatry. Lippincott: Williams & Wilkins. Sadowski H., Trowell J., Kolvin I., Weeramanthri T., Berelowitz M., & Gilbert, L.H. (2003). Sexually Abused Girls: Patterns of Psychopathology and Exploration of Risk Factors. European Child and Adolescent Psychiatry, 12, 221-230. Scarinci I.C., McDonald-Haile J., Bradley L.A., & Richter J.E. (1994). Altered Pain Perception and Psychosocial Features among Women with Gastrointestinal Disorders and History of Abuse: A Preliminary Model. Am J Med, 97, 108-118. Schaefer, F.C., Blazer, D.G., & Koenig, H.G. (2008). Religious and spiritual factors and the consequences of trauma: A review and model of the interrelationship. International Journal of Psychiatry in Medicine, 38, 507-524. doi: 10.2190/PM.38.4.i Sgroi, S. (1982). Handbook of Clinical Interventions in Child Sexual Abuse. Lexington, Massachusetts: Lexington Books. Smith, S. (2004). Exploring the Interaction of Trauma and Spirituality. Traumatology, 10(4), 231-243. Smith, A. (2005). Spiritual Appropriation as Sexual Violence. Wicazo Sa Review, 20(19), 97-111. Smith, C.E., et al. (1995). Childhood Abuse and Spiritual Development among Women Religious. Journal of Religion and Health, 34(2), 127-133. Tarakeshwar, N., Hansen, N.B., Kochman, A., Fox, A., & Sikkema, K.J. (2006). Resiliency among Individuals with Childhood Sexual Abuse and

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HIV: Perspectives on Addressing Sexual Trauma. Journal of Traumatic Stress, 19, 449-460. Tyler Johnson, J. (1992). Mothers of Incest Survivors: Another Side of the Story. Bloomington, Indianapolis: Indiana University Press. Valentine, L., & Feinauer, L.L. (1993). Resilience Factors Associated with Female Survivors of Childhood Sexual Abuse. The American Journal of Family Therapy, 21, 216-224. Van der Kolk, B. (1987). Psychological Trauma, Washington DC: American Psychiatric Press. Ward, T., & Hudson, S.M. (2001). Finkelhor’s Precondition Model of Child Sexual Abuse: A Critique. Psychology Crime and Law, 7, 291-307. Ward, C., & Lundberg-Love, P. (2006). Sexual Abuse of Women. In P.K. Lundberg, & S. Marmion (Eds.), Intimate Violence against Women: When Spouses, Partners, and Lovers Attack. West Port, CT: Praeger. Walker, D., Reid, H.W., O’Neill, T., & Brown, L. (2009). Changes in Personal Religion Spirituality During and After Childhood Abuse: A Review and Synthesis. Psychological Trauma: Theory, Research, Practice, and Policy, 1(2), 130-145. doi: 10.1037/a0016211 Waaijman, K. (2000). Spiritualiteit. Vormen, grondslagen, methoden, Gent: Carmelitana; Kampen: Kok. Walker, D.F. (2010). Addressing Religious and Spiritual Issues in Trauma – Focused Cognitive Behaviour Therapy for Children and Adolescents. Professional: Research and Practice, 41(2), 174-180. Walker, D.F., McGregor, K.L., Quaglian, D., Stephens, R.L., & Knodel, K. (2015). Understanding and Responding to Changes in Spirituality and Religion After Traumatic Events. In D.F. Walker, C.A. Courtois, & J.D. Aten (Eds.), Spiritually Oriented Psychotherapy for Trauma. American Psychological Association. doi: 10.1037/14500-008 Wisdom, C., Czaja, S., & Dutton, M.A. (2008). Childhood Victimization and Life Time Revictimization. Child Abuse and Neglect, 32, 785-796. Worling, J.R. (1995). Adolescent Sibling-Incest Offenders: Differences in Family and Individual Functioning When Compared to Adolescent Non-Sibling Sex Offenders. Child Abuse and Neglect, 19, 633-643.

Chapter 13

The Transcendence of Meaning in Spiritual & Secular Awakening Kelly Kilrea

Awakening has become a popular topic, with such books as The Power of Now (1999) and A New Earth (2006) by Eckhart Tolle, selling millions of copies in North America in recent years. There appears to be a strong impulse towards awakening and spirituality in the general population, with over 2 million people gathering together online to watch the first-ever webinar of Oprah Winfrey’s Book Club which featured Tolle’s A New Earth. Youth, parents, and grandparents called in to learn about ways to help themselves and their families experience more peace, harmony, and happiness in their lives. Studies of individuals who experienced a profound spiritual/secular awakening have recently emerged in the scholarly psychological literature (e.g., Kilrea, 2013; Taylor, 2013; Costeines, 2009). This research indicated that some individuals experience a profound transformation resulting in a stable, ongoing state of spiritual “awake-ness”, also sometimes referred to as “spiritual enlightenment”. The lived experience of awakening appears to be essentially similar, whether it is experienced

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and interpreted in spiritual, religious, or secular terms. For example, a person who experiences this kind of profound awakening who is also a devout Christian, is very likely to describe it in Christian terms, like “union with God” or “sacred marriage with Christ.” A person who has no spiritual or religious background might describe it as “oneness with all of Life”. Religious scholars have written about the phenomenon of awakening and often reference mystics such as St. Teresa of Avila, Meister Eckhart, and Pierre Teilhard de Chardin as examples. Historically, the literature has discussed awakening from a religious perspective. However, with the importance of personal growth and development emerging in today’s society, awakening is now more frequently discussed in secular and psychological terms. This phenomenon has significant implications for how we experience ourselves, our relationships, our families, and our world at large. For the purposes of this chapter, the ongoing or seemingly permanent experience of “awake-ness” or “wakefulness” following a spiritual or secular awakening is viewed as a psychological state and is situated within the literature on human development and human potential. Meaning Often, people facing death or major life crises, for example, consider important existential questions and engage in a search for meaning, perhaps hoping to discover why the situation is happening and how to make sense of it all. Jenkinson (2015) argued that meaning is not something we ought to search for and find, but rather meaning is something we make. A common component of psychotherapy is the exploration of how one makes meaning of challenging life circumstances, either individually or within a couple, family, or group (i.e. Frankl, 1959; Boorstein, 1997). Based on recent research, some individuals appear to have transcended a need to create meaning in or of their lives, not out of a sense of nihilism or hopelessness, but rather as part of what may be called an awakened or wakeful state of consciousness. Kilrea (2013) described the everyday, lived, physical, and sensory experience of spiritual enlightenment as lived by ordinary people who underwent a profound spiritual awakening. Their reported experience has important implications for our assumptions about the possibilities for human development. Of note, studies on the contemporary lived experience of awakening consistently reported that participants experienced a

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radical change in their conceptions of self, identity, world-view, and sense of spirituality, including their processes of meaning-making. [In awakening there] is a tremendous unchangeable sense of peace and rightness about everything I witness. So there’s nothing amiss, and nothing that is deeply disturbing. Because it fits. Living awake is living in an intimate understanding with grace and with the meaning of existence, the meaning of evolution, the source of creation. So there’s nothing amiss, nothing that’s not part of that. It’s a living peace. It’s a continual sense of peace in the center that can hold “I Am.” The “it is That—that is what I am.” The need to identify, the need to be something, be someone, be identified is “I am peace.” I am that. I am that which is experienced as grace and peace. And it’s a very, very true statement. In there—it’s joyous—it’s a quiet joy, content, of bliss. (Co-researcher D, Kilrea, 2013)

According to Kilrea (2013), Taylor (2013) and Costeines (2009), individuals who are living in an ongoing state of wakefulness no longer find themselves searching for meaning in their lives, nor making meaning of life events. For example, when a specific event happens to a person in an ongoing awakened state, it simply happens; these individuals simply respond as needed based on the situation and then they move on. They are very present-oriented and spend little time considering the past or future. Specifically, they no longer experience the urge to seek or create meaning from their experience: It simply is as it is. In addition to the absence of meaning-making in their lives, people living in this ongoing state of wakefulness reported dramatically reduced use of the corresponding mental functions of interpretation, analysis, or contemplation, all of which are generally employed to construct meaning from a life experience. As a feature of this state of awakening, the craving for a sense of meaning and purpose in life appears to have been satisfied. Instead, these individuals reported feeling full, complete, and whole, psychologically speaking, regardless of their life situation. They also reported the loss of the fear of death. With awakening came a sense of timelessness and a deep, unshakable knowing that fundamentally they do not end even with the apparent death of the body. According to Maslow (International Study Project, 1972), this certainty transforms how everyday life is lived and highlights the inherent meaning in every moment of life. In short, people living “awake” in this way typically lose the habit or desire to understand or find meaning in their lives or the world around them. As a result, they also experience an increased attunement to—and appreciation for—life’s present experience as it unfolds. They reported that life itself is utterly and inherently meaningful. From their

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perspective, meaning is already there, in all of its fullness, prior to our conceptualization and construction of it. In other words, these individuals reported experiencing an ongoing sense of satisfaction or completeness in their way of being and perceiving, which coincided with the transcendence of the need for meaning-making in everyday life. For example, when it becomes profoundly clear that fundamentally, everything and everyone is equally inherently valuable, all talk or thought of “meaning” becomes irrelevant. Therefore, paradoxically, from this perspective, life can be seen as both inherently meaningful and inherently meaningless. In the transcendence of duality, one appears to also transcend the need to make meaning. Family How is life lived in the context of the family and society when we are no longer driven to make meaning of our experience in the typical way? Is the spiritual impulse more than just a search for meaning? When we are no longer interested in constructing or creating meaning about our lived experience, what becomes of our outlook and ability to relate to others? In this chapter we address these questions, which have implications for psychologists, psychotherapists, counsellors, social workers, spiritual guides, and researchers. What Is Awakening? There is an abundance of popular writing about what Abraham Maslow coined the high-plateau experience, often referred to by contemporary spiritual teachers as spiritual awakening or spiritual enlightenment, by Stephen Bodian (2008), A.H Almaas (2004, 2008), Jeff Foster (2010), and Adyashanti (2012). Ideas from both philosophy (Merleau-Ponty, 1964) and psychology (Maslow, 1971; Washburn, 2003; Wilber, 2000) contribute to our collective interpretation on the nature of consciousness, the nature of embodiment in consciousness, and what it means to be “fully” human. Maslow’s work on transcending self-actualization (1969a, 1969b, 1970, 1971), including the concepts of transcendent peak and high-plateau experiences, are examples of secular psychological perspectives on awakening. Maslow suggested that the experience of enlightenment has been well-described in many literatures, which, although

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very different from each other in tone and style, contain passages that can be considered portraits of enlightenment as it is lived and experienced in everyday life (Krippner, 1972). These include Emerson’s (1936) Essays, Thoreau’s (1910; 1922) Walden, Proust’s (1913-1927; 1992) In Search of Lost Time, Basho’s (Matsuo & Hamill, 1991) Narrow Road to the Interior, Shunryu Suzuki’s (1970) Zen Mind, Beginner’s Mind, and Teresa of Ávila’s (1577; 2008) Interior Castle. IN DEPTH: TRANSCENDING SELF ACTUALIZATION Abraham Maslow (1908-1970) Acknowledged as the founder of Humanistic Psychology, and one of the co-founders of Transpersonal Psychology (Frager & Fadiman, 2013), Abraham Maslow changed our understanding of human nature and human potential with his insights into human consciousness. Maslow aimed to understand how we are motivated, as well as what our potentials are. In his early work, he described a pyramid-shaped, five-step hierarchy of needs model to describe human motivation which culminated with self-actualization (Frager & Fadiman, 2013). Later, he expanded this model to include transcendence needs, which involves the transcendence of self-actualization. Maslow (1971) studied a subset of people he called transcending self-actualizers, who experienced transcendence and high-plateau experiences. He also described peak experiences, which could occur for anyone in any stage of development, not just for the transcending self-actualizers. Transcendence Maslow’s landmark (1969b) article entitled Various Meanings of Transcendence described dozens of meanings or aspects of transcendence. Transcendence can be understood as the farthest reaches of human consciousness, characterized by the complete dissolution of the self and ego, exposure of the highest forms of truth, and the experience of an ultimate sense of bliss and peace. Peak Experiences Maslow defined the peak experience as a moment of excitement or joy where one is fully absorbed in their present experience. Peak experiences are “often inspired by intense feelings of love, by the beauty of nature, or by exposure to great art or music” (Fradiman & Frager, 2013, p. 327). Such an experience can be accompanied by feelings of total ecstasy and delight, without the constructs of past and future cognitions (Maslow, 1971). In sport, peak experiences are described by athletes as a feeling of timelessness and absolute immersion in their movement, which is also called a flow state (Csikszentmihályi, 1990). Although fleeting, these moments lend valuable insights about one’s perception of the world and the nature of reality. High-Plateau Experiences In contrast to peak experiences, a high-plateau experience is a lasting rather than temporary one. The high-plateau experience includes a

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radical change in a person’s perspective of both themselves and the world around them (Kilrea, 2013). The high-plateau experience is characterized as a stable, consistent change in perspective regarding the self, others, and the world. Fadiman & Frager (2013) described it as: … a fundamental change in attitude that affects one’s entire point of view and creates an intensified awareness and a new appreciation of the world. More stable and longer lasting than a peak experience, it represents a new, more profound way of experiencing and viewing the world. (p. 327) Maslow himself experienced this high plateau near the end of his life, and described it in a conference presentation reported in the Journal of Transpersonal Psychology (Krippner, 1972).

In psychology, noted contemporary scholars describe spiritual development (including enlightenment or awakening) in abstract and conceptual terms (e.g., Daniels, 2005; Ferrer, 2008; Washburn, 1995, 2003; Wilber, 2006, 2007). Others, such as Judith Blackstone, describe awakening from a theoretical (2007) and applied-embodied (2008) perspective, which is more easily understood in concrete terms and applied to everyday life. To learn more about what life is like for people who are in this state of wakefulness, researchers like Michael Fire (2011) and Michael Costeines (2009) interviewed individuals about their lived experience of nondual consciousness (or awakening) and provided descriptions of their ongoing state. Recent research on the nature and experience of awakened life was conducted by both Taylor (2013) and Kilrea (2013) and provided much-needed insight into how awakening is lived and felt, both within each person, and also in terms of the effect it has on relationships, families, and their ability to function in--and contribute to--the world. Fire’s (2011) research argued that the experience of nondual consciousness is incredibly powerful and goes well beyond a merely intellectual understanding to a fully embodied one, in which the experience of awake-ness is felt within the body in very concrete ways, and that it progresses (increases) gradually over time. Similar to the other studies discussed in this section, Fire (2011) found that many individuals experiencing nondual consciousness sought out a variety of support systems, such as spiritual teachers and spiritual guides, to assist with this experience and dealing with everyday life issues. The participants in this study reported feelings of ease, clarity, and trust in their lives, and described the ability to relinquish control over things, allowing things to be just as they are (Fire, 2011).

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Michael Costeines’ (2009) research on awakening provided evidence that the experience of nondual consciousness includes a strong felt sense of the fundamental unity of all of life, which is vastly different from the thought or belief that “all is one”. This profound sense of oneness with all of life is often felt as a deep sense of inner peace that is always there, and it also seems to result in far less inner conflict and conflict in relationships. Research by Kilrea (2013) suggested that, when awake, we are able to be more fully human, in the sense of maturity, development, and the means with which we are integrated in the world around us. We become cognizant of the embodied and intangible aspects of life, and are able to experience absolute peace, happiness, and fulfillment far more often. Her research revealed that the everyday bodily senses of taste, touch, hearing, smell, and sight, are very often experienced from a place of awe and appreciation, and are reported to be far more palpable, satisfying, and enjoyable than the participant’s experience of the senses prior to awakening. Consistent with Fire’s (2011) research, Kilrea (2013) found that people living in an ongoing awakened state are much more at ease with themselves and experience their lives in a more direct, simple, and organic way. Table 1 shows a list of some of the profound changes reported by coresearchers that occurred in their everyday, lived experience once they began living in an ongoing state of wakefulness (Kilrea, 2013). Table 1: Brief Summary of Changes in Lived Experience after Awakening Profound Change in: Being/Existing

– – –

Sensing

– – –

Brief Summary of Changes in Lived Experience after Awakening Pervasive sense of fulfillment, okay-ness, joy, ease, relaxation, and rest No sense of needing to accomplish; full contentment in simply being/existing No capacity for cause of intentional harm to anything or anyone Enhanced sensory capacity (gross and subtle senses) Enhanced awareness of primary senses (hearing, touch, taste, smell, sight) Enhanced awareness of subtle senses (intuition, non-linear or direct knowing)

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– – –

Physical/Body

– – – –

Cognition

– – – –

Brief Summary of Changes in Lived Experience after Awakening All affective experience is equally welcomed, including intense “negative” emotions Emotions and moods are experienced as transient and impersonal Increased experience of peacefulness, joy, unconditional love of self, others, and all Decrease in/absence of guilt Awareness, trust, and respect of the ultimate wisdom of the body Appearance no longer tied to self-worth, self-esteem, or sense of identity Long-term improvement of physical, emotional, and mental health Increased awareness of the presence of thoughts Increased frequency of simply being rather than actively thinking Decrease in thinking (involuntary or automatic thought) Inability to revert to previous worldview or experience of being

Similarly, Taylor’s (2013) findings demonstrated that people living in an ongoing wakeful state consistently reported a sense of increased wellbeing and positive mood, instances of being present, positive relationships and intensified perception, and an increased ability to let go and accept what is. His research also found that participants in an awakened state showed a decreased need for belonging or group identity, reduced or disappearance of the fear of death, and reduced interest in materialism. Taylor (2013) reported that participants consistently experienced high levels of connectedness and openness, as well as a lack of a sense of separateness from other people. Taylor (2013) attributed the characteristics of being present, having intensified perception, and enhanced relationships, to be outcomes associated with the reduced cognitive activity experienced by the participants who were awakened. In this context, reduced cognitive activity can be interpreted as a positive feature, with a marked reduction or elimination of excessive thought activity (i.e. ruminations, worries, constant mental “noise”). In general, recent research (e.g. Kilrea, 2013; Taylor, 2013; Costeines, 2009) suggested that people living in this ongoing wakeful state have an enhanced experience of being in relationship, in terms of the quality and depth of intimate, family, and social relationships, and derive more

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enjoyment and satisfaction from relationship. These features of an ongoing awakened state are consistent with participant/coresearcher reports of experiencing a profound sense of clarity, authenticity (freedom to be who they are without needing to be different), more access to deeper feelings of love and joy, more ability to experience one’s own and others’ distress, and an ability to accept things (and people) as they are. It is important to note that intimate and familial relationships are still “normal” in the sense that conflicts and strong emotions still arise. I remember one of the breaking points with my partner was when we were in the kitchen one day and this was after that kind of initial awakening thing, and he started something which would normally start a little argument between us—because it was like a tit-for-tat thing. And that was the whole point—that’s why you do those things: you say something, they say something back and then you get going. And I remember I didn’t have any response to it and he said, “Oh, no you don’t.” He was pissed off because I didn’t respond. And then he caught himself and said, “Well, I’m mad, because you didn’t respond in an angry way.” Well, that’s interesting. And then from that point, he started asking me, “Well, what’s going on?” And then he became interested in his stories and understanding more about this awakening. (Coresearcher A, Kilrea, 2013)

At first glance it appears that there may be fewer conflicts as well as a faster recovery time post-conflict (at least for the person in the wakeful state). It may be that this group of people is more likely to be “masters” vs. “disasters” of relationship, as described in John Gottman’s extensive research on what makes marriage succeed or fail (e.g. Gottman, 2015; Gottman, Driver, & Tabares, 2002). Further research focused specifically on the relational dynamics within couples and families when one or more persons are living in an ongoing wakeful state will make in important contribution to our understanding of this phenomenon.

Transcending Meaning in Awakening Earlier in the chapter, we addressed the concept of transcending meaning in the lives of people who are living in an ongoing awakened state (vs. having a temporary awakening experience). As discussed, those living in this state of wakefulness do not seek or derive meaning from life or its experiences in the conventional sense. For people experiencing this state, life is by nature meaningful, beautiful, and perfect in an absolute sense (even if relatively speaking there is apparent dysfunction or chaos),

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and this extends to all living things. In “simply being”, these individuals maintain a consistent sense of satisfaction and contentment in their lives. Kilrea (2013) explained that one’s sense of “Being” is fundamentally changed upon awakening and this effects how one views themselves, others, the world, and all life events. This leads to a drastic change in what is perceived as important. When life is viewed as already inherently meaningful without contrived interpretation and understanding, the search for meaning in the conventional sense ceases to exist. In a composite depiction of the coresearchers in her study, Kilrea (2013) described their reported experience of simply being and how it compares with their lived experience prior to awakening. Since awakening, we no longer have the same sense of being a separate and distinct being contained in our body. Now it feels as though there is an absence of rigid boundaries between “us” and everything “outside” of us. Our sense of who we are, our identity, is different. We no longer identify with the usual egoic sense of “Me”; it just doesn’t seem real in the same way anymore, and this includes all the old stories and beliefs and roles that used to make up who we believed we were. Actually, we no longer identify as anything in particular, which can be quite strange at first. You could say that we have a sense of being both nothing and everything all at once. If there is any sense of identity, it’s that we are simply life itself… there is a radical acceptance of life, a full allowing of everything as it is, and it feels much easier to be in the world this way. (Kilrea, 2013, p. 235).

When we are no longer driven to make meaning of our experience in the conventional way, how does this impact the way life is lived in the context of familial and societal interactions? How is Awakening Experienced in the Family? Research on how awakening is experienced in the family is in its infancy. So far, studies have revealed that, for some, there were disturbances in life (including relationships) that accompanied this transformation. This disruption depended on the circumstances, type of awakening experience, and other factors like social support. This period of disruption can be termed an integration phase of awakening, which appears to last anywhere from several months to many years (Taylor, 2012; Kilrea, 2013). For more about what causes awakening and what it’s like, see Steve Taylor’s (2010) book, Waking from Sleep: Why Awakening Experiences

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Occur and How to Make Them Permanent, and Back to Sanity: Healing the Madness of Our Minds (2012a). Despite the extraordinary shifts that occur for those who have undergone this type of major awakening, it appears that once integrated, life is lived in a very practical and tangible way. The everyday responsibilities are still met (e.g. paying bills, doing chores, maintaining a job), and for many, there exists a sense of deep physical embodiment and transcendence of the previously employed ways of thinking (Kilrea, 2013). There is more clarity regarding decision making, as the old and dysfunctional motivating factors regarding choice (i.e., guilt, pressure, deadlines, external perceptions, and rewards) are no longer used in the process. There is also an inclination towards more spontaneity, creativity, time spent outdoors in nature, patience, compassion, and better treatment of the body (Kilrea, 2013).

Awake in Everyday Family Life Coresearchers in Kilrea’s (2013) study discussed their experiences of parenting and family life. Coresearchers reported an unwavering sense of peace and rightness about the everyday experiences that occur in parenthood, taking care of elder family members, and usual familial interactions. They reported experiencing pain and grief, for example, as part of life, without making it a problem or having it interfere with their simultaneous awareness of the peace and perfection of life. In this research, families where one adult was living in this ongoing state of wakefulness were characterized by less projection, stress, confusion, agitation and frustration (experienced by the awake one), which may have been “contagious” to some degree to the other family members. At the very least, with one member “awake” there was one less person contributing to the escalation, conflict, or drama of family dynamics, at least to a substantial degree, if not completely. More “awakeness” in a family may contribute to climate of reduced confusion, invalidation, resentment, and verbal and physical violence; it also appears have interpersonal communications characterized by more attending, listening, and understanding. Future research may explore the implications of this perspective to determine if there is a qualitative or quantitative difference in the experience of family conflict and bonding experiences.

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Mind, Intellect, and Thought Based on the research by Kilrea (2013), Taylor (2012b, 2013), and Costeines (2009), it appears that in a wakeful state, individuals are more fully aware of their thoughts and thinking processes, and have very little or no desire to analyze or interpret thoughts, feelings, and experiences. The drive to over achieve and engage in intense, mentally engaging tasks is no longer present. The mind is much quieter and when thoughts do arise they no longer initiate experiences of anxiety or stress. In Kilrea’s (2013) study, this changed cognitive experience substantially affected the coresearchers’ interpersonal relationships as they became much more transparent and had a reduced or absent desire to understand and interpret the actions of others. The coresearchers also reported a drastic reduction or disappearance of the need to control or change others. Since much relational conflict is related to these activities, there appeared to be the effect of far greater harmony and less conflict within intimate relationships. Interpersonal Relating and Communication The communication style and language employed by those who are living in an ongoing wakeful state is reportedly very different than before their shift in consciousness. For example, for some, with the loss of one’s sense of identity, the use of the word “I” does not have the same meaning than it did before, to such an extent that one may stop being able to use it until it is redefined for themselves (Kilrea, 2013). Individuals living awake in this way appear to have greatly reduced or lost their need for approval and corresponding fear of rejection. As such, in relationship, they appear to be more upfront, straightforward, and authentic when communicating about their needs, for example. Despite the relative absence of a need for approval, those living in a state of wakefulness are typically aware that those they love need to be seen and appreciated. For example, one person described saying nice things to his partner to make him feel special and appreciated, not because he related to the words that he said in the same ways her partner did, but because he knew it would be something that he would like (Kilrea, 2013). One coresearcher discussed his experience when relating to others in his life and how there was now a type of censorship in order

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to be sensitive to the needs of others that was needed during regular, everyday conversations: Sometimes I want to say things like, “You’re just afraid to die.” That’s the kind of thing I want to say to people when it’s obviously about that and not about their Aunt Lillie or whatever they’re talking about. I’ll be thinking, “You’re just afraid to die—that’s all it is.” And I want to say things very directly. But I think I impose a sort of censorship to not go there. And so we talk about Aunt Lillie. People will talk about the economy, and I’ll say, “Well, don’t you see there’s this fear in your body and you’re not touching it.” Like, “just touch the fear,” but if they’re not open to the conversation, I might sensor that and say, “Yeah, the economy, what do you think’s going to happen?” Those are self-imposed rules in a way, or censorship. I’ve learned to be careful with what I’m saying. (Kilrea, 2013, p. 115).

In relationships, a newfound directness and apparent lack of “neediness” may cause some difficulty for the partner of the person who has experienced this type of transformation. On the other hand, the relationship may be enriched by a partner who is more present, accepting, loving, and kind, and by their capacity for far greater intimacy with another human being (Kilrea, 2013).

Love, Sensuality, Sexuality, and Intimacy According to Kilrea (2013), the experience of love, sensuality, sexuality, and intimacy is much more deep and fulfilling than it was before awakening. There was an increase in connection and intimacy amongst participants and their loved ones and previous inhibitions dissolved, which allowed for much more rich and authentic expressions of love to shine through. One co-researcher described the experience of their separate autonomy and identity fading away, along with their pride. Without the autonomous sense of self, there was no longer a desire to keep others at arm’s length or to self-protect from vulnerability and potential heartbreak. Additionally, in awakened experiencing, the deep sense of sacredness that is perceived in all of life also infuses the experience of love, intimacy, sensuality and sexuality, which extends far beyond conventional notions of what constitutes “good” sex. Further research on these specific aspects of wakeful living is needed to better understand it, as well as its impact on couples.

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Death and Aging Death is viewed as non-absolute to those who are awake (Kilrea, 2013; Taylor, 2013). Those living in a wakeful state appear to possess a deep knowing and utter certainty about the eternal nature of life, which is not tied to any sort of belief or faith. With the absence of belief, and the presence of absolute knowing, participants and coresearchers in these studies reported an absence of fear of death and of the aging process. This knowing that life does not end and that one never really dies, is consistent with these individuals’ spontaneous, effortless acceptance of what is. Along with a radically revised understanding of the nature of life and death came a change in how individuals in an ongoing wakeful state approached death and bereavement with their loved ones (Kilrea, 2013). For example, people living in a wakeful state are likely to be able to be very present to family members who are grieving, and feel deep grief themselves, while also not resisting the fact of it, nor necessarily feeling sorry about the “death” of the person who has passed, even if it is a loved one—it is simply not understood this way (Kilrea, 2013). Social Responsibility, Compassion, Service, and Work Although there is a profound understanding of the perfection of life, those living in a wakeful state are still very much aware of the suffering that occurs in the world, and perhaps feel it even more deeply than others. Kilrea’s (2013) research revealed that such individuals paradoxically hold the capacity for true compassion, as well as what appears to be a detached knowing that despite the circumstances, all is also well. Coresearchers explained that they tended to help others in a spontaneous way, when the inspiration arose. For example, they assisted others in personal ways, such as helping to see through illusions related to their struggles and problems, as well as with tangible forms of support like charitable donations. One common myth about awakening is that a person will stop being involved in life, will stop taking responsibility for themselves and the world, and generally stop being of service. Kilrea’s (2013) study found just the opposite: With awakening came powerful, spontaneous action in support of friends, family, strangers, and the planet, for example. Research by Kilrea (2013) and Taylor (2013) demonstrated that, in terms of work or occupation, participants became very clear about what

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they were called to do. This appeared in some as a newfound contentment with a previously banal or stressful job, and in others as inspired versus desire-driven set of actions towards a successful new career path. Due to a shift in priorities and perception of what is ultimately real and important, awakening had the effect of improved work-life balance and increased enjoyment in work tasks, which inevitably had an effect on all other areas of life, including on relationships and family life. Yaden and colleagues (2015) discussed the various aspects of such callings, be they understood as scientific, secular, or sacred. Josipovic and Blackstone (2015) for example, argued that an awakened or nondual state could be framed as a powerful “calling” to nonduality, providing a framework for contextualizing transcendent or wakeful experiencing. Implications of Awakened Living Personal and Family Growth and Development The implications of contemporary research on the lived experience of awakening for personal and interpersonal growth and development are widespread. This research (i.e. Taylor, 2012b; Kilrea, 2013; Taylor, 2013) is relevant to our understanding of personal, familial, and societal wellbeing because it deepens our knowledge and ability to support this kind of growth. Research about the ongoing state of wakefulness has increased our understanding of human nature, functioning, and relating in concrete ways. It points to the possibility that fulfillment, peace, happiness, and love in everyday life can be a reality for all of us (Kilrea, 2013). Taylor (2010) argued that this kind of transformation is accessible to anyone willing to take specific and deliberate action to bring it about, which he detailed specifically for this purpose. We must be cautious, however, as it is not something that can be possessed through desire or attainment. It is an uncovering or illumination of a way of being through the recognition of what is. As parents, mentors, authority figures, and friends, we can encourage our loved ones to challenge and reassess their current way of being in the world, and to create a personal and interpersonal environment in which we can flourish and grow. Concepts such as compassion, loving kindness, connectedness, and equanimity, are principles that can be taught and encouraged to our youth and peers. Learning how to be more present in daily life as well as how to feel free amidst our thoughts rather than run by them can lead

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to powerful, positive changes within an individual and within a family, whether undertaken by one member or all. The following section provides an overview of useful resources to support this type of growth. Psychotherapy and Counselling Current research on the state of wakefulness described in this chapter has important implications for the field of psychology and psychotherapy. Obtaining a more complete understanding of the various ways that an individual can relate to and live in the world is essential to our basic conception of human potential and the possibilities for our growth and development. Becoming aware of and deeply understanding this state of wakefulness will inform psychotherapeutic interventions and ensure that counsellors are both more skilled and suitable for this population. For example, knowing how and why an individual interprets meaning in their life (or does not), is vital to creating effective therapeutic interventions that are fundamentally respectful, holistic, and responsible. Given the information offered in this chapter, psychotherapists may consider how best to support individuals and families who are adjusting to and integrating the many facets of a profound spiritual or secular awakening that is characterized by this ongoing state of wakefulness. One could ask, for example, “How do I approach psychotherapy for this type of client when their sense of purpose and meaning, as well as motivation and sense of identity is completely different from the general population and my own?” The following section is a collection of resources that support the process of awakening in its various stages, from initial seeking to integrating and maturing within this ongoing state of consciousness. Transpersonal Psychotherapy. According to Lajoie and Shapiro (1992), transpersonal psychotherapy is “concerned with the study of humanity’s highest potential, and with the recognition, understanding, and realization of intuitive, spiritual, and transcendent states of consciousness” (p. 91). As a holistic form of psychotherapy, one basic assumption is that consciousness is at the centre of what it means to be human (Rodrigues & Friedman, 2015). This type of psychotherapy will support the fostering of spiritual and secular awakening, as well as assist individuals and their families with the unfolding and integration of an ongoing state of wakefulness. Nondual psychotherapy is a form of transpersonal psychotherapy in which the therapist themselves embodies a nondual or wakeful state of consciousness as part of the psychotherapeutic process. Nondual psychotherapists are excellent companions on the road to integration of a variety of forms and types of awakening experiences (i.e. Kundalini awakening;

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psychic opening; mystical experiences), including the ongoing state of wakefulness found in spiritual/secular awakening (Prendergast, Fenner, & Krystal, 2003; Prendergast & Bradford, 2007). Nondual psychotherapy will also support family members adjusting to a loved one’s profound awakening and transformation. Logotherapy. Logotherapy is a therapeutic model created by psychiatrist and neurologist Viktor Frankl, focused on helping clients to find meaning in their lives through transforming their attitudes about what they consider to be meaningful (Frankl, 1959). Logotherapy attempts to orient and direct the patient toward a concrete, personal meaning. But it is not its purpose to give a meaning to the patient’s existence; its concern is only to enable the patient to find such a meaning, to broaden, so to speak, his or her field of vision, so that he or she will become aware of the full spectrum of possibilities for personal and concrete meanings and values. (Frankl, 1959, p. 164). This is similar in nature to awakening itself, as there is a sense of detachment from previous cognitions and a reintegration of thoughts and perceptions. It would be helpful to examine the use of Logotherapy among clients experiencing an awakening as their sense of meaning and purpose has transformed in such a radical way. Logotherapy could assist a person who has had a peak-type of awakening experience (versus the ongoing awakened state) and may be struggling with reconceptualising their purpose and values in life. This may be especially true for anyone who was previously living within the parameters of a very specific or rigid belief system, or who may be living in an environment that is unaccepting of other ways of being and thinking. Given the transcendence of meaning that occurs in the spiritual/secular awakening discussed in this chapter, Logotherapy (as described by Frankl above) is not an appropriate therapeutic modality for someone adjusting to an ongoing state of wakefulness, but it may be beneficial for family members (who are not experiencing this same state) by supporting them as they find or make meaning of this situation. Resources for Awakening and Self-Inquiry Byron Katie Byron Katie is a speaker and author who developed a method known as The Work which helps alleviate suffering by helping people identify and question their stressful thoughts. While simple, this method is deceptively

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powerful when done with a genuine commitment to knowing the truth of one’s experience. Through asking and answering four questions followed by “turnarounds”, one is led into a journey of self-inquiry that often leads to freedom from suffering. The Work can be understood as a form of contemplation or meditation that supports the inquirer to identify and re-interpret beliefs that cause them suffering in various areas of life, like relationships, work, and finances. Byron Katie’s website—www. thework.com—includes free resources to do “The Work”, as well as a facilitation hotline to do The Work by phone. It also includes powerful video content of people doing The Work and being transformed by it. The facilitation guide to The Work, along with a copy of the four questions and turnarounds is available at the end of this chapter as an appendix. Susan Stiffelman Susan Stiffelman is a licensed psychotherapist who has worked as a marriage and family therapist for over 30 years. Her work provides families with the tools to create and maintain stable, harmonious relationships between parents and their children so they can create long lasting, meaningful bonds with one another. She has written two books that represent the principles that she teaches, Parenting with Presence (2015) and Parenting Without Power Struggles (2012). Her work is informed by the ongoing wakeful state of consciousness we discussed in this chapter, and her insights have the potential to powerfully transform the way we parent and experience our family relationships. More information on her perspectives and programs is available at www.susanstiffelman.com. Interestingly, Byron Katie and Susan Stiffleman teamed up for engaging and helpful video discussions on parenting to respond to readers’ questions: these are available on either of their websites. Eckhart Tolle & the UnCourse Eckhart Tolle is a world-renowned spiritual teacher and author who experienced a profound awakening during his late twenties. Over the years he has worked with numerous people to help them find peace and achieve fulfillment in their lives. He is the best-selling author of two very powerful books on awakening; The Power of Now (1999) and A New Earth (2006), millions of copies of which have been sold worldwide. Eckhart Tolle’s website, www.eckharttolle.com, provides access to his

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teachings (video content, articles, and books), recommended resources (books by other spiritual teachers), and the UnCourse, which provides free information and exercises for those who are interested in deepening their state of consciousness. Ken Wilber: Integral Life & Integral Meditation Ken Wilber is an eminent scholar, philosopher, and transpersonal developmental theorist. His website, www.IntegralLife.com, provides a succinct and simple model—called Integral Life Practice—for achieving personal growth and development in a truly holistic (integral) and balanced way. Families and individuals at all stages of development can use this approach to support their health, happiness, success, wellbeing, and personal and spiritual growth. Wilber’s (2016) book, Integral Meditation: Mindfulness as a Path to Grow Up, Wake Up, and Show Up in Your Life includes guided meditation instructions, experiential exercises, and tools to identify each person’s greatest potential and help them achieve it. Conclusion The detailed experiences of enlightenment described by Costeines (2009), Fire (2011), Taylor (2013), and Kilrea (2013) reveal that there are substantial differences in the way one relates to themselves, others, and engages with the question of meaning and purpose in life, as compared with the “ordinary” state of consciousness represented in much of the psychological literature. This research represents an important beginning from which to endeavour to understand the nuanced, subtle, and highly individual aspects of spiritual and secular awakening and its accordant “transcendent” psychological state of functioning. In a state of wakefulness, individuals do not construct meaning in the typical way, rather, they appear to have transcended the need to create or find meaning and instead effortlessly perceive the whole of life and being, including all of its aspects as inherently (and equally) meaningful. Paradoxically, life is also interpreted as equally meaningless as a result of the embodied knowing (vs. intellectual understanding) of the qualitative nature of life as being prior to all interpretations, concepts, and labels, including those of “meaning” and “meaninglessness”.

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Based on the collected research on spiritual and secular awakening thus far, it appears that awakened family life is both similar and dissimilar to mainstream or typical family life. Further research will be helpful to determine in what ways and perhaps explain why these differences exist. Kilrea’s (2013) research suggested that, in families where one person is living in an ongoing state of wakefulness, there appeared to be more of a sense of intrapsychic and interpersonal connection, less interpersonal conflict (defensiveness, argumentativeness, intolerance, resentment, and harshness), more forgiveness, fluidity (vs. rigidity), authenticity, respect, and courage to be. Given the radical nature of the intrapsychic change that occurs in spiritual and secular awakening, it would be unlikely for their transformation to not also transform their relationships and family dynamics. According to Kilrea (2013), this ongoing state of wakefulness is characterized both by a greater sense of intimacy and connection with all of life, including with their partners, parents, and children. Along with this deeper connection, they also reported experiencing a healthy detachment from loved ones and more acceptance of “what is”, perhaps rendering them more resilient to the stress and demands of family life. The research on awakening, including as it pertains to meaning and to family life, is still very much in its infancy. Although interesting conclusions may be drawn from the research presented, there is still much to learn about the nature of the lived experience of spiritual and secular awakening and its implications on everyday life. Future research in this area could involve investigations of the processes, mechanisms, and pragmatic functioning of awakening as it pertains to meaning, purpose, motivation, growth, as well as effects of awakening on family dynamics and functioning. Another interesting area of future research is the therapeutic efficacy of various psychological and psychotherapeutic models that support individuals and their families with the specific needs and challenges associated with life lived in this state of consciousness. On an individual level, many resources are available for those called to move from knowing about awakening to a deeply embodied, felt sense of awakening. Transpersonal psychotherapy, The Work of Byron Katie, Susan Stiffleman’s offerings on Presence in family life, Eckhart Tolle’s Uncourse on Awakening, and Ken Wilber’s Integral meditation and life practices are powerful, practical resources for personal transformation that ultimately contribute to societal transformation.

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Reflection Questions 1) Within a family, how could one parent’s experience of an awakened state aid in the interpration and management of child behaviour through a shift in family dynamics? 2) What would awakening mean in your own life? Glossary Awakening: An awakening produces a radical inner transformation in which our experience of identity and being shifts. These changes radically affect how we experience ourselves, others, and various life events. It transforms our worldview and affects how we observe, interpret, understand, and relate to the world around us. Maslow described this as the high-plateau experience. Nondual Consciousness: Nondual Consciousness (sometimes referred to as nondual awareness) reflects an individual’s perception of the unity of all things in life and universe. There is no longer a distinction between the “I” of the body, mind, and consciousness, and the external world. It is another term for awakening, originating from the Advaita spiritual tradition. Neo-Advaita is often referred to as “Nonduality”.` References Adyashanti. (2012). The way of liberation: A practical guide to spiritual enlightenment. Campbell, CA: Open Gate Sangha. Almaas, A.H. (2004). The inner journey home: Soul’s realization of the unity of reality. London, UK: Shambhala. Almaas, A.H. (2008). The unfolding now: Realizing your true nature through the practice of presence. London, UK: Shambhala. Blackstone, J. (2007). The empathic ground: Intersubjectivity and nonduality in the psychotherapeutic process. Albany, NY: State University of New York Press. Blackstone, J. (2008). The enlightenment process: A guide to embodied spiritual awakening. St. Paul, MN: Paragon House. Bodian, S. (2008). Wake up now: A guide to the journey of spiritual awakening. New York, NY: McGraw-Hill. Boorstein, S. (1997). Clinical studies in transpersonal psychotherapy. Albany, NY: SUNY Press.

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Caplan, M. (1999). Halfway up the mountain: The error of premature clams to enlightenment. Prescott, AZ: Hohm Press. Costeines, M. (2009). What enlightenment means: A qualitative study of nondual consciousness as experienced by teachers of nondual mysticism. (Doctoral dissertation). Institute of Transpersonal Psychology, Palo Alto, CA. Retrieved from http://proquest.umi.com/pqdweb?did=1796372011&Fmt=7&clientId =45836&RQT=309&VName=PQD (UMI No. 3356468) Csikszentmihályi, M. (1990). Flow: The Psychology of Optimal Experience. New York, NY: Harper & Row. Daniels, M. (2005). Shadow, self, spirit: Essays in transpersonal psychology. Charlottesville, VA: Imprint Academic. Emerson, R.W. (1936). Essays. Reading, PA: Spencer Press. Ferrer, J. (2008). What does it mean to live a fully embodied spiritual life? International Journal of Transpersonal Studies, 27, 1-11. Fire, M.S. (2011). Exploring the felt experience of nondual consciousness. (Doctoral dissertation). California Institute of Integral Studies. Retrieved from http:// search.proquest.com.ezproxy.itp.edu:2048/docview/874220156?accountid= 25304 Available from ProQuest Dissertations and Theses database. Foster, J. (2010). The wonder of being. Salisbury, UK: Non-Duality Press. Frager, R., & Fadiman, J. (2013). Abraham Maslow and transpersonal psychology: Deficiency psychology and being psychology (7th ed.). Retrieved from http:// wps.prenhall.com/wps/media/objects/1942/1989250/12-Maslow-a.doc Frankl, V. (1959). The spiritual dimension in existential analysis and logotherapy. Journal of Individual Psychology, 15(2), 157-165. Gottman, J.M. (2015). Principia Amoris: The new science of love. New York, NY: Routledge. Gottman, J.M., Driver, J., & Tabares, A. (2002). Building the sound marital house: an empirically derived couple therapy. In A. Gurman, N.J. Jacobson (Eds.), Clinical handbook of couple therapy. New York: Guilford. International Study Project. (1972). Abraham H. Maslow: A memorial volume (B.G. Maslow, Comp.), Monterey, CA: Brooks/Cole. Jenkinson, S. (2015). Die wise: A manifesto for sanity and soul. Berkeley, CA: North Atlantic Books. Josipovic, Z., & Blackstone, J. (2015). Called to nonduality. In D.B. Yaden, T.D. McCall, & J.H. Ellens (Eds.), Being called: Scientific, secular, and sacred perspectives (pp. 67-82). Denver, CO: Praeger. Katie, B. (2007). A thousand names for joy: Living in harmony with the way things are. New York, NY: Three Rivers Press. Kilrea, K.A. (2013). The everyday, lived, physical, and sensory experience of spiritual enlightenment. Available from ProQuest Dissertations & Theses Global. (UMI No. 1430475147) Krippner, S.E. (1972). The plateau experience: A. H. Maslow and others. Journal of Transpersonal Psychology, 4(2), 107-120. Lajoie, D.H., & Shapiro, S.Y. (1992). Definitions of transpersonal psychology: The first twenty-three years. Journal of Transpersonal Psychology, 24(1), 79-98. Maslow, A.H. (1969a). The farther reaches of human nature. Journal of Transpersonal Psychology, 1(1), 1-9.

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Maslow, A.H. (1969b). Various meanings of transcendence. Journal of Transpersonal Psychology, 1(1), 56-66. Maslow, A.H. (1970). New introduction: Religions, values and peak-experiences (new ed.). Journal of Transpersonal Psychology, 2(2), 83-90. Maslow, A.H. (1971). The farther reaches of human nature. New York, NY: Viking Press. Masters, R.A. (2010). Spiritual bypassing: When spirituality disconnects us from what really matters. Berkeley, CA: North Atlantic Books. Matsuo, B., & Hamill, S. (1991). Narrow road to the interior. Boston, MA: Shambhala. Merleau-Ponty, M. (1964). The primacy of perception. Evanston, IL: Northwestern University Press. Peers, E.A. (Trans.). (2008). St. Teresa of Avila’s Interior castle. Radford, VA: Wilder. (Original work written 1577) Prendergast, J.J., Fenner, P., & Krystal, S. (2003). The sacred mirror: Nondual wisdom and psychotherapy. St. Paul, MN: Paragon House. Prendergast, J.J., & Bradford, G.K. (2007). Listening from the heart of silence: Nondual wisdom and psychotherapy. St. Paul, MN: Paragon House. Proust, M. (1992). In search of lost time. New York, NY: Modern Library. (Original work published 1913-1927) Rodrigues, V., & Friedman, H.L. (2015). Transpersonal psychotherapies. In H.L. Friedman, & G. Hartelius (Eds.), The Wiley Blackwell handbook of transpersonal psychology (pp. 580-594). West Essex, UK: John Wiley and Sons. Stiffleman, S. (2014). Parenting with presence: Practices for raising conscious, confident, caring kids. Novato, CA: New World Library. Stiffleman, S. (2010). Parenting without power struggles: Raising joyful, resilient kids while staying cool, calm, and connected. New York, NY: Simon & Schuster. Suzuki, S., & Dixon, T. (1970). Zen mind: Beginner’s mind. New York, NY: Weatherhill. Taylor, S. (2010). Waking from sleep: Why awakening experiences occur and how to make them permanent. New York, NY: Hay House. Taylor, S. (2012a). Back to Sanity: Healing the Madness of Our Minds. London, UK: Hay House. Taylor, S. (2012b). Spontaneous awakening experiences: Exploring the phenomenon beyond religion and spirituality. Journal of Transpersonal Psychology, 44(1), 73-91. Taylor, S. (2013). A phenomenological investigation into the psychological transformation interpreted as ‘spiritual awakening’: Possible causes, characteristics, and after-effects. (Doctoral Dissertation). Liverpool John Moores University, Liverpool, UK. Thoreau, H. D. (1992). Walden, or, life in the woods. New York, NY: Alfred A. Knopf. (Original work published 1910) Tolle, E. (1999). The power of now. Novato, CA: New World Library. Tolle, E. (2006). A new earth: Awakening to your life’s purpose. New York, NY: Plume. Washburn, M. (1995). The ego and the dynamic ground: A transpersonal theory of human development. Albany, NY: State University of New York Press.

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Washburn, M. (2003). Embodied spirituality in a sacred world. Albany, NY: State University of New York Press. Wilber, K (2000). Integral psychology. Boston, MA: Shambala. Wilber, K. (2006). Integral spirituality: A startling new role for religion in the modern and postmodern world. Boston, MA: Integral Books. Wilber, K. (2007). A brief history of everything. Boston, MA: Shambhala. Wilber, K. (2016). Integral meditation: Mindfulness as a way to grow up, wake up, and show up in your life. Boulder, CO: Shambhala. Yaden, D.B, McCall, T.D., & Ellens, J.H. (Eds.). (2015). Being called: Scientific, secular, and sacred perspectives. Denver, CO: Praeger. Yalom, I. (1980). Existential psychotherapy. New York, NY: Basic Books.

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Appendix: Facilitation Guide for The Work of Byron Katie

Facilitation Guide for The Work of Byron Katie Four Questions and Turnarounds Use the following four questions and optional sub-questions with the concept that you are investigating. When answering the questions, close your eyes, be still, and witness what appears to you. Inquiry stops working the moment you stop answering the questions. 1. Is it true? (Yes or no. If no, move to question 3.)

2. Can you absolutely know that it’s true? ( Yes or no.) 3. How do you react, what happens, when you believe that thought? •

Does that thought bring peace or stress into your life?

•

What images do you see, past and future, and what physical sensations arise as you think that thought and witness those images?

•

What emotions arise when you believe that thought? (Refer to the Emotions List, available on thework.com.)

•

Do any obsessions or addictions begin to appear when you believe that thought? (Do you act out on any of the following: alcohol, drugs, credit cards, food, sex, television, computers?)

•

How do you treat the person in this situation when you believe the thought? How do you treat other people and yourself?

4. Who would you be without the thought? Who or what are you without the thought? Turn the thought around. A statement can be turned around to the self, to the other, and to the opposite. Find at least three specific, genuine examples of how each turnaround is true for you in this situation. For each turnaround, go back and start with the original statement. For example, “He shouldn’t waste his time” may be turned around to “I shouldn’t waste my time,” “I shouldn’t waste his time,” and “He should waste his time.”

For more information on how to do The Work, visit thework.com © 2017 Byron Katie International, Inc. All rights reserved. thework.com

26 June 2017

Retrieved from: http://thework.com/sites/thework/downloads/worksheets/ facilitationguide_Eng.pdf

FINDING FAMILY MEANING THROUGH BEREAVEMENT & END-OF-LIFE

Chapter 14

Finding Meaning in the Aftermath of Family Bereavement: An Existential Analytic Approach Mihaela Launeanu, Derrick Klaassen, & Janelle Kwee “We 1just don’t know why we should go on anymore. How can life possibly be good again after such a loss?” These were the words with which Marion started the interview. She and her husband Jim were seeking counselling three years after the death of their 22-year-old daughter, Jennifer, who died suddenly and tragically in a motor vehicle accident. Marion spoke mostly at the start of the session. She recalled the phone call they had received late at night three years ago from the police, the disbelief both of them had felt, the initial support from friends and their faith community, the agonizing funeral in which they laid the body of their beloved and only daughter into the ground, and the suffering they have experienced for the last years, as friends and even family gradually “moved on,” while they were “left behind” in their grief. Jim initially said very little – he was more stoic, and when he spoke, it was quietly, with tears welling up occasionally in his eyes. The most difficult challenge, and in fact the reason that Jim and Marion were now seeking counselling, is that they were struggling to make sense of their life now. They had grieved heavily for months, years, and had both sought individual counselling and attend bereaved parent support group. This had been immensely helpful for both Jim and Marion, but now – after three years – they were continuing to struggle to find a reason to keep living. Jim went about his work, as a heavy-duty mechanic, with stoic determinism. “Someone needs to pay the bills around here,” he noted, but there was little joy in his day. At times, he was able to enjoy a conversation with his colleagues or a beer with his friends, but these times happened infrequently. Mostly he was worried about Marion, who had not returned to her job as a medical office assistant since Jennifer’s death. In the initial months following the funeral, Marion had been despondent. She rarely left the home, spent much of her days at home, clutching various plush toys or other memorabilia that 1  This case is based on a combination of several different families from the 2nd author’s clinical and research work. The names and other identifying information have been changed to maintain the anonymity of the families.

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belonged to Jennifer, and contemplated suicide. This intensity of Marion’s grieving lasted for about a year – since that time, she has been mostly “depressed” – struggling to find anything in life that is enjoyable. Previously enjoyed hobbies – such as knitting, gardening or hiking with Jim – have not been taken up in years. Overall, Jim and Marion seem to struggle in finding any kind of meaning in life right now. Jim recalled a conversation with their pastor, who assured them that God had a plan for their lives, even without their daughter, but this brought little comfort. Both Jim and Marion have struggled with attending their church – the joyful music and everyday small talk after the services just did not fit with their life anymore. Marion has particularly struggled with her faith. “Most days I am angry at God. It says in Scripture that God will not give you anything more than you can handle, but this cannot be true. Look at us! How could he take away our only child?”

For clinicians and researchers working with the bereaved, Jim and Marion’s story above is likely not unfamiliar. Situations with intense suffering almost inevitably evoke questions of meaning and the challenge of meaninglessness. Bereaved parents, and many others who suffer, routinely ask themselves questions about the meaning of their life, the life of the deceased and the meaning of their suffering (Braun & Berg, 1994). Such questions, when posed in the context of psychotherapy, offer a significant clinical challenge to clinicians, as we are generally eager to want to assist clients in finding meaning in their suffering and lives, but may be limited in doing so. Meaning, after all, cannot be given, but must be found, worked through, and then taken up by clients themselves (Drexler, 2016). And at times clinicians themselves may struggle with meaning and meaninglessness, and this raises the question of how we can guide clients into something which we ourselves do not experience. Clinical questions around finding meaning must, of course, be addressed within the wider context of parental bereavement. Many researchers and clinicians (e.g., Janzen, Cadell, & Westhues, 2003–2004) acknowledge that the loss of a child is one of the most devastating losses for parents, which increases the risk for both physical and mental health challenges, such as increased suicidality (Harper, O’Connor, Dickson, & O’Carroll, 2011), higher levels of post-traumatic stress (Murphy, 2008), a complicated or traumatic course of grief (Bennett, Litz, Sarno Lee, & Maguen, 2005), increased rates of depression and anxiety (Kreicbergs, Valdimarsdottir, Onelöv, Henter, & Steinbeck, 2004), higher rates of paternal alcohol use (Vance, Boyle, Najman, & Tearle, 2002), increased relational or marital conflict (Rogers, Floyd, Seltzer,

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Greenberg, & Hong, 2008), reduced sexual intimacy (Dyregrov & Gjestad, 2011), and even an increased risk of mortality (Li, Hansen Precht, Mortensen, & Olsen, 2003). In this chapter, we hope to to offer some helpful reflections that will address the clinical and theoretical challenges of meaning and meaninglessness in working with bereaved families, from an existential-analytical perspective (Längle, 1994; 2005). We will begin with a brief problematization of the issue, focusing specifically on the challenges of working with family bereavement, where meaninglessness is particularly poignant. We will then introduce an approach that has been very helpful to us, as persons, clinicians and scholars in addressing this matter – Existential Analysis. Following a brief overview of the theoretical structures of Existential Analysis, we will explore its conceptualization of meaning, tracing the scholarly lineage back through the work of Alfried Längle (1994; 2005) and Viktor Frankl (1969). As clinicians, one of our chief concerns is the applied dimension of working with meaning; the remaining portions of the chapter will be dedicated to a practical exploration of how to assist clients in addressing meaninglessness in their lives. In particular, we plan to explore a method called the Method of Life Horizon (Längle, 2013) and will illustrate the application of this approach to dealing with meaninglessness in the context of family bereavement, specifically in the situation that Jim and Marion are facing. The Challenge of Meaning and Meaninglessness Research on the construct of meaning has become increasingly popular in the psychological literature (Steger & Frazier, 2005). Most scholars trace the beginning of this work to the theoretical and clinical writings of Vikor Frankl (1969), who recalled the importance of finding meaning in a place seemingly devoid of it, German concentration camps during World War II. Scholarly investigations into meaning have spanned the breadth of psychological literature since then (Janoff-Bulman & McPherson-Frantz, 1997), including more recent and unexpected explorations of meaning within the context of behavioural therapy (DeGrandpre, 2000) or cognitive behavioural therapy (Fleming & Robinson, 2001). Examples are also easily found within the family bereavement literature. For example, Park and Folkman (1997) conceptualized meaning-making as a form of coping within the larger framework of the transactional model of coping (cf. Lazarus & Folkman, 1984). In this

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context, the process of constructing meaning was understood as a coping strategy to address larger frameworks of meaning. Similarly, Neimeyer and his colleagues (Gillies & Neimeyer, 2006), proposed a meaningreconstruction model of grieving, in which grieving was focused around three central processes related to meaning – sense-making, benefitfinding, and identity change. While we are encouraged to see the increase of meaning-related research in the literature, some significant challenges remain. One of the most central problems with respect to the scholarly understanding of meaning pertains to the dominant conceptualization of meaning. The definition of meaning is generally limited to cognitive capacities (such as sense-making or benefit finding above), and to individual achievements. When translated into clinical practice, this leaves bereaved persons with the impossible task of trying to construct their own meaning in the absence of larger cultural or spiritual frameworks that support such constructions. Sometimes, there simply is no sense to be made or benefit to be found when one’s child dies (Murphy, 2008; Nadeau, 2011). Similarly, relying solely on cognitive and intrapsychic re-constructions of meaning, places a significant burden on the psychotherapist, who must now assist the individual or family with a process akin to cognitive restructuring. In our view, a more personal and dialogical understanding of meaning, as has been outlined in Existential Analysis (Längle, 2005), provides a deeper and more helpful ground on which to explore the challenge of meaninglessness. In addition to the theoretical challenge of meaning, a clinical and personal challenge may present itself, namely the challenging problem of meaninglessness itself. Viktor Frankl (1969) is the clinician and scholar first credited with the exploration of this construct, which he termed ‘existential vacuum’. For Frankl, an existential vacuum was characterized by an inner void or emptiness, boredom (loss of interest), apathy (lack of initiative) and a sense of despair and the belief that life is absurd. A phenomenological exploration of this construct (Längle, 2005) revealed that meaninglessness can be understood as the result of not being touched by values. While we will explore the constructs in greater detail shortly, a brief theoretical excursion may be appropriate at this point. In Existential Analysis, this ‘not being touched by values’ reveals both an inner and an outer pole that is characteristic of all experiences and is represented in Existential Analysis’s dialogical model (Längle, 2003). ‘Not being touched’ relates to the general human capacity for emotional engagement, and in the case of meaninglessness we see that clients

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struggle with their capacity to sense not just the cognitive meaning of their situation but also the felt or emotional engagement with a value, something that is experienced as good. In short, we could say that meaninglessness prevents us from sensing and experiencing what is good in life, and this in turn is a significant clinical challenge. In sum – we might then summarize the challenges surrounding the understanding of meaning and meaninglessness in a three-fold manner. As clinicians and scholars we face the challenge of superficiality, when meaning is solely understood and treated as a cognitive problem, which requires a rational solution in situations in which rationality may be insufficient to provide an answer to the suffering of our clients. The second challenge we face is one of individualism, which is a result of our collective distrust in larger institutions and stories, and in which clients increasingly have to construct their own meanings. While an individual approach to meaning-making gives greater freedom, it is often too overwhelming for the individual soul. Persons who are part of greater collective worldviews (e.g., indigenous clients, clients from spiritual communities) have a distinct advantage of being able to receive rather than construct meanings (Pargament, 1997; Rohr, 2003). And finally, we face the challenge of nihilism, in which both clients and therapists may not experience their lives in general and their suffering in particular is good for anything. Rather – suffering simply is, or, even worse, there is a faint pseudo-religious sense in which they experience themselves as being punished by the universe or God (Pargament, 1997). Either way, the universe is definitely not a benevolent place, a context that is ultimately for and with them. Despite the scholarly efforts in researching the problem of meaning and meaninglessness, these challenges remain and await to be theoretically and clinically addressed. Existential Analysis and Logotherapy Existential Analysis and Logotherapy are therapeutic approaches that, in our experience, are uniquely suited to engage with and address these challenges with the aim of supporting families such as that of Jim and Marion in their search for meaning. In this section, we will provide a brief description of the theoretical framework of Existential Analysis and its therapeutic principles relevant to finding meaning. Existential Analysis is based in the anthropology of Viktor Frankl who identified meaning-seeking as the deepest human motivation

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(Frankl, 1969). Prior to Frankl’s pioneering work in this area, meaning was considered to be of the domain of religion and philosophy, something that was not and should not be addressed in psychotherapy and psychology. The International Society of Existential Analysis and Logotherapy was founded in 1983 in Vienna and represents the fruit of collaboration between Viktor Frankl and Alfried Längle. Under the leadership of Dr. Alfried Längle, Existential Analysis was further developed as an existential approach to psychotherapy, which includes and builds on Frankl’s Logotherapy. Existential Analysis is a phenomenological and person-oriented psychotherapy with the aim of helping a person to discover a way of living in which one is able to give inner consent for one’s actions. The purpose of Existential Analysis can further be described as guiding a person towards mentally and emotionally free experiences in which he or she is able to make authentic and responsible decisions (Längle, 2012). While Existential Analysis is a relatively novel approach to psychotherapy in North America, we are able to draw upon European research into its effectiveness. It is important to note that Existential Analysis, alongside other psychotherapeutic orientations such as psychodynamic psychotherapy and cognitive behavioural therapy, has been approved for application by the Ministry of Health in Austria. This approval was granted upon review of studies of its effectiveness. Such studies revealed comparable effectiveness of Existential Analysis to other established methods of psychotherapy (e.g., psychodynamic psychotherapy, behavioural therapy, and systemic therapy) across a range of clinical issues in in-patient settings (Längle, Görtz, Rauch, Jarosik, & Haller, 2000; Steinert, 2001), as well as high patient rates of satisfaction (Laireiter, Schirl, Kimeswenger, Längle, & Sauer, 2000). The existential motivations. The framework of Existential Analysis elaborates three other existential motivations in addition to the search for meaning (Längle, 2005; Kwee & Längle, 2013). In Existential Analysis, four Fundamental Motivations (FM) make up the basis for existence and correspond to four primary existential questions (Längle, 2012): 1. I am here. Can I be? Do I have the necessary space, protection and support? 2. I am alive. Do I like to live? Do I feel my emotions and experience have value? 3. I am me. May I be myself? Am I free to be me? 4. What am I here for? For what do I live? What gives my life meaning?

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A fulfilled existence corresponds to a person being able to say ‘yes’ or to give inner consent (Kwee & Längle, 2013) to the existential questions corresponding to the four FMs: to the world (FM1), to life (FM2), to oneself (FM3), and to meaning (FM4). While the focus of this chapter and the current therapeutic work we describe with Jim and Marion corresponds especially to the fourth FM, it is important to have the backdrop of all four FMs for understanding how life is understood in the Existential Analytic framework. As can be imagined, the total therapeutic work with Jim and Marion may significantly address the other FMs, in particular the process of grieving which corresponds to FM 2, but we focus the description in this chapter on their felt sense of loss of meaning, which has become apparent in this time during which they have tried to resume a ‘new normal’ life after facing their daughter’s death. Dialogical exchange and the existential turn. In the existentialanalytic framework, the human person is fundamentally enabled for dialogue (Längle, 2003). This means that human beings are in ongoing inner and outer dialogue, with themselves and with life, respectively. This dialogue is bidirectional: It is not only the person who asks questions of life but also, and even more importantly, life itself poses questions to the person, including the question of meaning. This represents a significant shift from asking, ontologically, ‘what is the meaning of life?’, to allowing oneself to be addressed by life—but, it is the person, not life in general, who gives the answer. More specifically, in this dialogue between the person and his or her life, it is the person who is fundamentally addressed by life. The person is not reduced to waiting on life for ultimate answers but finds him or herself questioned by the very fact of being alive. To be human essentially means to be questioned. Living is one’s answer. Frankl (1969) referred to this shift in our dialogue with life as the Existential Turn (Figure 1), and, as we will show later in discussing Jim and Marion’s case, it represents the central insight relevant to finding meaning. Everything that the person encounters, including Marion and Jim’s life-altering situation of losing a child as well as the most mundane and everyday chores and activities, offers questions such as: what are you called to do? Or, what is life asking from you in this situation? Life, as it is, presents problems, which beget suffering. Jim and Marion’s unexpected and tragic suffering makes this ever so clear. To be questioned by life includes being questioned by situations of pain, and the process of giving answers to real situations must correspond to the ‘givens’ of one’s existence. If we believe it is worthwhile to engage Jim and Marion on

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their questions of meaning without changing the painful reality that they cannot reverse time and bring their daughter back, we must recognize that a fulfilling and meaningful life is not contingent on fairy tale realities, but based in actuality, as life presents itself.

Figure 1. The Existential Turn

Constituent elements of existential dialogue. There are three constituent elements of existential dialogue (Längle, 2003): First, dialogue has an addressee; second, the addressee should understand what is said; and third, dialogue requires a response. These external elements of dialogue correspond to the subjective elements of impressionability, inner positioning, and expressiveness. Receptivity and impression. A person can be reached or accessed when addressed because of her or his capacity for receptivity. To be addressed is to be called personally, where no other I can be substituted. Each person is the addressee in his or her encounter with life. Jim and Marion have each been personally addressed by their actual situation; each of them is touched uniquely. Being receptive is experienced subjectively as being impressionable. We use this term not in its association with gullibility, but to describe that one’s situation creates a subjective impression, as if the situation touching the person was like a fingerprint impression in clay. The impressions are inherently subjective. The same external force may leave a deeper impression in one piece of clay compared to another. Impressions, thus, represent subjective and spontaneous emotional responses. It appears that Jim and Marion each experience their shared situation somewhat differently. They each have an impression that corresponds to their own subjectivity as persons. Understanding and inner positioning. Being able to understand is the second element necessary for dialogue. Without understanding, a

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person simply reacts. With understanding, there can be an opening up to experience, to the dialogue with life. In drawing on his or her capacity for understanding, a person is able to look at a situation with some distance, moving from being simply under the influence of the situation to looking at it in relation to other life experiences. Understanding is facilitated through private reflection. Being able to come to an inner position is the result of understanding. The inner position is the personal response to the impression of the encounter. What starts spontaneously as a raw, affective reaction is reflected upon through inner and outer dialogue. Jim and Marion’s initial responses to the phone call they received three years ago would most certainly represent raw, unfiltered reactions, characterized by their felt impression of the tragic situation. This raw affective reaction can then be taken up in a reflective process of inner dialogue, in which the person is able to reflect on the current situation in light of other experiences and values. The person is then free to bring these values into a position, with integrated emotionality (Längle, 2003), and a will for expression. Responsiveness and expression. Responsiveness is the third element in dialogue and represents a person’s ability to give an answer. Answering is disclosing oneself and showing one’s position. In the same way that an individual is personally addressed, not addressed by ‘life in general’, responsiveness and expression are also personal. Marion and Jim each are the only persons who can answer for themselves. And even though they share aspects of their profound loss, they cannot give each other’s ‘yes’ (answer) to life or meaning. The subjective capacity for expressiveness corresponds to the observable activity of responsiveness. After finding an inner position, the person is ready to expose him or herself and give an answer. In this expression, the person fulfills what is possible for him or her in a given situation. Engaging in existential dialogue with life in this manner allows clients to gradually discover, experience, and live the existential meaning of their particular life situation. Whereas the question, why did this happen?, may remain unanswered, each person may find his or her personal answer to the question, what am I asked to do in my particular life situation?, and that answer represents the felt, personal or existential meaning in that specific situation. In the next section of this chapter, we will further elaborate how meaning is understood in the framework of Existential Analysis, and what personal capacities are needed to search and find meaning.

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The Concept of Meaning in Existential Analysis In Existential Analysis, meaning is defined as the most valuable possibility in a given situation (Längle, 2012). Several aspects are noteworthy in this definition. First, this definition of meaning differentiates existential meaning as the personal meaning emerging in a specific situation from the ontological meaning defined as the ultimate meaning of our existence. In working with families searching for meaning, it is important to clarify that it is unrealistic to expect that therapy will provide the ontological meaning of why everything happened, or what is the ultimate meaning of what happened. The need to know that “this happened for a reason” may be a fervid concern for many family members living through tragic circumstances. However, even when the ontological meaning remains concealed, families can be helped to engage in exploring and finding the existential or personal meaning of their life circumstances through reflective dialogue with their specific life situation. Personal meaning can be found and lived by each person, and together as a family. Second, the above definition highlights the main features of the existential meaning: (1) the existential meaning is always experienced and lived as something of value or good, even if it may not be pleasant, or fully intelligible; (2) the existential meaning represents a possibility; and (3) the existential meaning is contextual, not universal, and what may be experienced as meaningful in one life situation by one person may not feel meaningful for another person in similar life circumstances. In that way, we cannot prescribe a certain, static meaning that could be applied to similar life situations, and, thus, given to the client to believe in. Meaning as realization of values. Meaning is always experienced and lived as something of value or good. At its core, the existential meaning represents an alignment with a value (Längle, 2012). In other words, one cannot experience meaning if one cannot detect and follow a value, and if one’s actions are not in line with that particular value. Finding and fulfilling the personal meaning means an active engagement in realizing values. Frankl (1969) distinguished three types of values that one can fulfill in order to experience meaning: (1) experiential values that are received and enjoyed, (2) creative values that are generated through personal contributions, usually in a field of activity, and (3) attitudinal values that pertain to our attitude in front of implacable life circumstances, such as death or severe, incurable pain. For bereaved families, such as Jim and Marion’s, the experiential values may be found in allowing themselves to receive affection and comfort from each other, in valuing the resiliency

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of being and staying together through such tragic circumstances, and even in nurturing the spiritual relationship with their daughter (i.e. through the establishment of a continuing bond – cf. Klass, 1999). Creative values may be realized through establishing a legacy for the deceased child or family member, advocating for a cause or pursuing a career in the memory of the lost family member, or creating memories together (e.g., scrap books, memorial rituals). Attitudinal values allow bereaved families to experience meaning in suffering rather than just feeling excruciatingly absurd pain. For example, Jim and Marion may realize that their suffering honours the love and enduring relationship to their daughter, and is not just incomprehensible pain or an undesirable symptom to be eliminated at all costs. Meaning as possibility Existential meaning represents a possibility that opens human beings to the future and to the existential dimension of becoming and transforming, including dying to old ways of being. Meaning represents the dynamic dimension of our existence and cannot be found when one tries desperately to maintain the status quo or to return to previous habits or ways of living. Meaning can only be found in the uncertainty of the future, not in holding on to a preferred past. Fulfilling meaning is transformative, never fully known from the beginning, never for sure, but always open to transformation and even open to experiencing meaninglessness and pointless suffering. This view on meaning is in stark contrast with the cognitive-behavioural approaches (DeGrandpre, 2000; Fleming & Robinson, 2001) that see meaning as something static and given that someone must believe in and act accordingly. In Existential Analysis we approach the question of meaning with phenomenological openness and invite possibilities even if this means taking a journey through uncertain or painful moments. Meaning as fruitful possibility. Existential meaning represents a possibility that can bring to life something good and something new (e.g., a new value, a new project, or a new way of life); in other words, a fruitful possibility. Existential meaning is never barren but always creative even in the most daring life situations. For example, a bereaved family may decide to create a legacy for the deceased child by establishing a charity. The invitation that a therapist could extend to bereaved parents is to reflect on what good could come through this situation, and more specifically, through what each of them decides to do in this

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situation. Whereas there are bereaved families who spend their lives in utter meaningless suffering or bitterness, there are others who can sense or detect the value and possibility born in the midst of a tragedy and find meaning by fulfilling that possibility (Murphy, 2008). Meaning and self-transcendence. The existential meaning represents a possibility that allows someone to reach beyond one’s immediate needs, goals and even pain and to orient oneself towards the other and to the world. Frankl (1969) called this capacity self-transcendence and considered it very important for finding and fulfilling meaning. In order to live the existential meaning one has to look beyond oneself, even beyond one’s throbbing pain, and to give oneself for the other. For example, bereaved families giving to others or helping others, contributing to a cause, or building a legacy for the deceased child may experience meaning in these acts of self-transcendence. It is hard if not impossible to find personal meaning amidst tragic life circumstances if one is solely focused on one’s own needs or on reducing one’s pain. Coping strategies to deal with the overwhelming emotional pain may be very helpful in early stages, but may become an obstacle later on when the question of meaning arises. Finding meaning requires a shift from focusing on one’s needs and emotions to embracing a self-transcendent orientation by giving or contributing to others’ lives because meaning can only be found within a context larger than the individual person. Self-transcendence is intimately connected with the concept of existential turn discussed earlier in this chapter: Finding meaning always involves taking an existential turn and, instead of asking what can we get out of this, we now ask what is life asking of us in this circumstance. The answer to that question usually points towards seeing more than ourselves and reaching beyond our needs. This self-transcendent orientation may lead to the realization that there is so much more to life, both good and bad, than my imagination or my plans could ever capture. Contextual meaning. The experience of personal meaning is only possible and valid within a specific context or situation, and what may be experienced as meaningful in one situation may not be meaningful in another one (Frankl, 1969; Längle, 2005). There are no universal meanings but only situated or contextual meanings found through a personal dialogical exchange with a particular life situation. This awareness may sometimes take away the pressure of knowing the meaning of it all or the ultimate meaning: even if one cannot grasp the ultimate meaning of why something happened, one can still experience personal meaning in certain life situations. For example, even if Jim or Marion will never be able to understand why God allowed their only daughter to die, they

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could still experience and fulfill meaning in their lives, as we will later show when discussing the clinical work with both of them. Personal capacities for finding meaning In order to be able to find and experience the existential meaning in the midst of life tragedies, human beings rely on four personal capacities that are mobilized through the dialogical exchange with a specific life situation (Längle, 2005; 2012): (1) perceiving the relevant existential dimensions in a given situation; (2) feeling touched by values relevant to the specific existential circumstances, (3) making decisions based on what resonates with oneself within a certain life situation, and (4) realizing the choice made in the previous step by engaging in concrete actions. Not surprisingly, these four personal capacities correspond to the key elements of the dialogical exchange discussed in a previous section – impression, position taking, and expression. This dialogical structure represents the essential framework for personally engaging the question of meaning from an existential-analytical perspective by mobilizing the personal capacities relevant for finding meaning. Perceiving the relevant existential dimensions. Detecting or recognizing the relevant existential elements in a given situation represents a first step towards finding meaning. For a family who lost a child, the existentially relevant content is facing the incomprehensible, what is out of the natural order of life and even experiencing a faith crisis and questioning their understanding of God or the spiritual order of the universe. The sensibility to detect these existentially relevant issues is a crucial first step towards finding meaning. The therapist may encourage family members to recognize the existentially relevant aspects by inviting reflection and dialogue on themes such as: what is it that you are mostly struggling with, what is causing you the most painful heartache or confusion, what are you grappling with and cannot find an answer to, what possibilities do you see even if you don’t know what to choose or what is still possible after such a tragedy. Feeling touched by values. Exploring and experiencing values and feelings in relationship to the existentially relevant theme for the family is another step towards finding meaning. For the family who lost a child the pain is felt as excruciating and then it is numbed under waves of rage or despair. Therapists may invite family members to explore how they are moved by the situation they are facing, what feelings are arising as they are experiencing the situation, what values are at stake for each of them, how is this particular situation important and personally relevant.

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How is this important to each of them and what does it bring up in each of them? Feelings are our instruments for detecting values. In the midst of the most profound and painful sadness, there is a buried value that waits to be recognized and lived. For example, after losing a child, the love for that child is the value that can be fulfilled through building a child’s legacy, or cultivating a spiritual relationship with the lost child (i.e. through a continuing bond). Decision making based on personal resonance. This capacity means choosing based on what corresponds to me. This requires taking a position: at the bottom of my heart, what do I say to this, and what do I want to do about this situation? The answer to these questions is felt and it is experienced as “it fits with me” or “it corresponds to me”. It may even be that some bereaved family members decide to just be with sadness or pain as this is what corresponds for them at that moment, and they may experience the meaning in and through suffering, and by realizing an attitudinal value with respect to a life tragedy: “there is nothing I can do in front of this tragedy but to be silent and to suffer, and through my suffering to honour this experience”. Here it is important to take the existential turn and ask: “What do I feel/sense that I am called to do in this particular situation? What is life asking me to do? I am responsible which means that I must give my very own response to this life challenge or tragedy. No one else can do that but me.” Realizing the decision. In order to fulfill existential meaning one has to act and to express one’s choice in concrete actions. A field of activity is usually critical to experience and fulfill meaning. One cannot experience meaning if one does not invest oneself in something that transcends one’s immediate preoccupations (i.e. self-transcendence), and if one does not engage in creating and fulfilling possibilities (i.e. meaning as fruitful possibility). In this sense, it is important to make time in therapy to discuss with bereaved families how exactly will they carry on their decisions, when, where and who will be involved in each step, what good do they anticipate to come through their actions, and how will they deal with the consequences of their actions (e.g., some actions may challenge some old ways of being and may put some relationships at risk). The Method of Life Horizon Building on this understanding of the existential meaning and of the personal capacities required to experience and fulfill meaning, this

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section will present a method to work with bereaved families facing meaning questions. Specifically, here we will focus on how we put these capacities into practice to accompany people like Marion and Jim who are suffering from their loss of meaning. How do we describe this process of engaging existential meaning, practically and therapeutically? Some have argued that existential approaches to psychotherapy, more known for their philosophical underpinnings, contribute little to practical techniques and approaches (Prochaska & Norcross, 2014). However, specific therapeutic methods are elaborated in Existential Analysis and it is our aim in this section to highlight transparently one such therapeutic method, the Method of Life Horizon, a phenomenological procedure that is used for engaging clients in their search for meaning. Broadly, the Method of Life Horizon (Längle, 2013) follows three steps. First, it looks at actuality, what really happened. Second, the therapist prompts the client to look into the history of his or her experiences of life. The third and most important step is dialogue through practicing the Existential Turn. Step 1: What happened? In the first step, the therapist helps the client to look back to clarify the situation of meaninglessness. Clients are queried about their loss of meaning. What happened, actually? Since when have you not had any meaning? Was there a problem? How do you understand the reason for losing meaning? Do you have an explanation for your loss? Sometimes, this step makes clear enough how the client’s experience of meaning was lost. With respect to Jim and Marion, the discussion of how they lost meaning in their lives would be expected to centre around Jennifer’s death. Some therapists might even be tempted to simply assume that this is the case and would wonder why it would be necessary to begin with this step in such an obvious case of meaning loss. However, it is important to remember that Existential Analysis is a phenomenological method, that is, we want to hold in abeyance our theoretical assumptions and hypotheses and turn, together with our clients, to the actual situation and look openly and honestly at it. We have found that making assumptions about our client’s experience prevents us from walking closely with them through their suffering and sometimes leads us into wrong directions. And so, in the case of Jim and Marion it would be important to begin with the question of how meaning was lost. Some initial questions for Jim and Marion might be: When did you start to notice that you were feeling lost or were lacking direction in your life? How did you notice this? Were there specific feelings that told you that

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life was lacking meaning? When specifically did this happen? Did it happen for both of you at the same time or were your experiences staggered? In our discussions with Jim and Marion, it turned out that the loss of meaning did not actually occur at the point of Jennifer’s death, and did not happen simultaneously for both Jim and Marion. Consistent with the literature for family bereavement (cf. Center for the Advancement of Health, 2004), Jim and Marion were caught up in the agony of grief upon learning of their daughter’s death. The experience was overwhelming and disorienting for both. In the throes of despair, they had to plan and conduct a funeral service for Jennifer. The initial questions and struggles that emerged for Jim and Marion had to do with the causality of Jennifer’s death. They wanted and needed to know how it happened and why it happened. While these are natural questions, they only partly address the question of meaning, since they are oriented towards causality. However, human beings require deeper answers to such life questions, since they are not just about causality (what happened and why) but also about the context and the future. As Jim and Marion sought solace and understanding in individual and group therapy, they gradually began to understand and accept the reality of the facticity of their daughter’s death. Jennifer had been standing on the side of the road after her car had broken down, and had been hit by distracted driver who had not noticed her vehicle on the shoulder of a busy highway. Over time, however, both Jim and Marion began to ask the deeper questions of meaning. Initially, their pastor told them both – and they had accepted this answer – that Jennifer’s death was held within God’s larger will for her life. As they put it – “it was Jennifer’s day to go home”. However, Jim’s growing dissatisfaction with life and Marion’s anger at the inadequacy of an ideological answer to an existential question, revealed that this answer was insufficient. As they recalled the chronology of the events of their grieving, Jim and Marion discovered that Marion had lost meaning approximately a year after Jennifer’s death. For a year, she had accepted the ontological meaning that had been offered to her, but then began to notice her increased anger – anger at God, the pastor, and fellow parishioners. She had begun to feel confused, because she could not understand why she was still angry in the face of the meaning that had been supplied for her. But the anger at the injustice of Jennifer’s death and the fact that others could just ‘move on’, told Marion that she had lost her meaning, or perhaps had never really found a sufficiently grounded one in the first place.

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Jim’s meaninglessness was more insidious. He had continued to attend church (which Marion refused to do), but had begun to have his own doubts about whether it was really ‘Jennifer’s time to go home’. He and Marion began arguing about this phrase, and noticed an increased conflict in their lives. Jim wanted to hold onto the belief in the meaning, but was himself only partially convinced, and could not provide Marion with an adequate reason to continue their trust in a God who would present them with an overwhelming challenge such as the death of their Jennifer. Over time, Jim noticed that life was less enticing. It was as if the colours had been drained from his life; the vibrant taste of food had become dull. Life just felt ‘empty’. Step 2: The lifeline of meaning. In the second step, the therapist helps the clients look into their experiences of life. This history is a lifeline, a source of connection to experiences of meaning. In this step, the client considers what experiences of meaning or felt value they had in the past. The therapist asks, what was meaningful in your lives? How was that meaningful? What did you like to do in your life? The person’s biography, through their lived experience and personal recollection, offers felt traces of meaning for the person. The second line of questioning for Jim and Marion began with a distinction between ontological and existential meaning, although we used the terms “spiritual meaning” and “personal meaning” in order to make the distinction more understandable. After some discussion, Jim and Marion agreed to lay aside the question of ontological meaning, of whether it was really ‘Jennifer’s day to go home’, and to look more specifically at their lives. Jim and Marion noticed that they had ceased to engage in meaningful activities individually and together. Marion had ceased her hobbies – knitting by herself or with her friends, reading, and the absence of previously enjoyable work as a medical office assistant had left a hole in her life. Jim, likewise, had stopped doing many things he had enjoyed previously. He had lost almost all contacts with his friends, whom he initially attributed to their discomfort with Jennifer’s death, but more acknowledged recently may have also had something to do with his own reticence for social engagement. And jointly – Jim and Marion admitted that they had relatively little that bound them together as a couple – apart from their persistent grieving for their daughter. Prior to their loss, they had found joy in relationships with friends, fellow parishioners, in hiking the local mountains, or travel on holidays. Of course, many of these activities had involved Jennifer or contained memories of Jennifer, and it was just easier to avoid the painful

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memories now of her absence in their lives. But it was encouraging to both Jim and Marion that they could find, individually and together, threads of meaning that could be picked up. Remembering the activities brought joy into the conversation, joy even in remembering how Jennifer had been part of their holiday trips or hikes. Step 3: The existential turn. Finally, in the third step, we engage dialogue in the existential turn. It is simply impossible for us to know for certain the meaning of ultimate questions posed by life and death. Jim and Marion had been initially given such a meaning by their pastor, but found that the lived and experienced meaning that they required needed more engagement on their part. And so we began simply with acknowledging our human limitations – we do not know why Jennifer died. In our inability to offer an answer about ultimate, or ontological meaning, we express solidarity with the client in his or her suffering. Letting go of the ultimate ontological questions of meaning can be freeing. In this dialogue of the existential turn, we turn toward the horizon of existence and let the clients be asked what their own life can be for. Is something needed from you? Where are you being asked questions in life? Where do you experience belonging? What is your life revolving around? The challenge in the person’s life is to figure out what makes one not in tune with oneself, and to discover what feels important and fulfilling. This is the central activity around meaning in engaging the existential turn. Once Jim and Marion had begun to loosen their grip on the answer of meaning, a grip that had been begun to be pried lose by Marion’s anger and Jim’s indifference to life, a new space and new possibilities opened up. We were, of course, cautious in approach to doing so; Jim and Marion largely shared their pastor’s theological views, and it was neither our aim nor our role to question their ontological commitments. However, Jim and Marion’s suffering told us that at the very least something else was needed, a more real and lived meaning, and meaning that encompassed their current existence and that looked into the future, rather than a persistent searching for a reason for why Jennifer had to die. And so, Jim and Marion’s willingness to explore alternative understandings of meaning represented a necessary phenomenological openness to this existential turn. We began to explore Jim and Marion’s actual life, asking questions about where they sensed that they might be needed in their uniqueness, with their gifts, talents and capacities. For Marion, one part of the answer was very obvious. In an effort to revitalize her life, Marion had

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begun going to the gym. She had gained weight after Jennifer’s death and the absence of employment left her with time for engagement with other activities. At the gym, Marion had found connections with other women, and had discovered that one of her newly found friends there, Vange, was also a bereaved mother whose son had died only a few months ago. Marion and Vange began to meet regularly at the gym, gaining comfort from grieving together for their children, and finding some joy in the exercise classes that they joined. Vange quickly opened up to Marion, and it was clear that Vange needed help. She was in a similar place where Marion had been – suicidal at times and often needing to talk through the various parts of the grieving journey. Marion assisted Vange in connecting with a local grief counsellor, the bereaved parent group, and began bringing over food and lending books on grief that she had found helpful. Over time, Marion found increased joy and vitality in helping Vange, and decided to begin volunteering with the local bereaved parent group. She had found a place in life where she was needed and where her loss and suffering could be helpful to others. Explorations for Jim were initially less fruitful. He was engaged with his work as a mechanic and did not find as much time during the day to consider how life could become more meaningful. However, as he remained open to the possibility of where he may be needed, an opportunity emerged. Providentially, this opportunity also had the benefit of binding Jim and Marion together more. Jim had continued to attend church relatively regularly, and had found comfort and even joy in doing so. Marion still struggled with coming to church, since none of their friends there seemed to be able to understand their experience as bereaved parents. Marion also held on to several insensitive comments about their loss (e.g., “Jennifer is in a better place now; God must have just needed her more than you need her”) by her fellow parishioners, and struggled to come to church. But Jim was able to see the intentions of his fellow parishioners in their clumsy attempts to offer comfort. But he was also able to see how these attempts had caused suffering and alienation. He began speaking with the pastor about offering an occasional class at church for those who may want to help the bereaved with more competence. Although Marion was not yet able to join Jim in this activity, she found it deeply meaningful herself, and assisted Jim with preparing the classes and offering book suggestions. Through these classes, Jim began to engage more socially with others, and the newfound friendships brought back some vitality and energy into his life.

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Conclusion The therapeutic journey of Jim and Marion in their search for finding meaning after their daughter’s death illustrates how a personal, dialogical engagement with their existential situation and adopting the existential turn were key moments in their efforts to find meaning. This attitude helped them reorient their search for meaning away from trying to grasp the ontological or spiritual meaning of Jennifer’s death towards discovering their own personal answer and inner position in front of these tragic circumstances. This new attitude restored their sense of freedom as well as their commitment and responsibility to engage in meaningful actions rather than feeling overwhelmed or stuck in despair and resentment. Whereas their efforts at deepening and fulfilling the meaning of their existential situation will continue and some aspects of their situation that will remain beyond their comprehension, Jim and Marion seem now better prepared and more open to reengage with life in a more authentic way by bringing forward their unique gifts and capacities to make a contribution in their life and in the life of others. Reflection Questions 1) How does Existential Analysis understand meaning? How is this understanding relevant when working with bereaved parents? 2) In what way can the Existential Turn be used in helping bereaved parents explore and potentially find meaning? 3) Describe how one can find existential meaning even in tragic life circumstances like the one experienced by Jim and Marion. 4) Reflect on how dialogical engagement is essential to finding personal meaning. In what ways might this be relevant for your own life? 5) What moved you while reading Jim and Marion’s story? What are you taking with you in terms of understanding family bereavement from an existential perspective? Glossary Existential Analysis is a phenomenological and person-oriented psychotherapy with the aim of helping a person to discover a way of living in which one is able to give inner consent for one’s actions.

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Existential Analysis guides a person towards mentally and emotionally free experiences in which he or she is able to make authentic and responsible decisions. Existential Turn is a shift in our dialogue with life whereby we do not wait for life to have ultimate answers, but realise that each moment of life questions us to find meaning in that moment. References Bennett, S.M., Litz, B.T., Sarno Lee, B., & Maguen, S. (2005). The scope and impact of perinatal loss: Current status and future directions. Professional Psychology: Research and Practice, 36(2), 180-187. doi: 10.1037/0735-7028. 36.2.180 Braun, M.J., & Berg, D.H. (1994). Meaning reconstruction in the experience of parental bereavement. Death Studies, 18, 105-129. Center for the Advancement of Health (CAH) (2004). Report on bereavement and grief research. Death Studies, 28, 491-575. doi: 10.1080/07481180590906138 DeGrandpre, R.J. (2000). A science of meaning: Can behaviorism bring meaning to psychological science? American Psychologist, 55, 721-739. doi: 10.1037/ 0003-066X.55.7.721 Drexler (2016). Steps towards meaning: the method of grasping meaning. In S. Längle, & C. Wurm, Living your own life: Existential Analysis in action (pp. 65-77). London, UK: Karnac Books. Dyregrov, A., & Gjestad, R. (2011). Sexuality following the loss of a child. Death Studies, 35, 289-315. doi: 10.1080/07481187.2010.527753 Field, N.P. (2008). Whether to relinquish or maintain a bond with the deceased. In M.S. Stroebe, R.O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice (pp. 113-132). Washington, DC: American Psychological Association. Fleming, S., & Robinson, P. (2001). Grief and cognitive–behavioral therapy: The reconstruction of meaning. In M.S. Stroebe, R.O. Hansson, W. Stroebe, & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 647-669). Washington, DC: American Psychological Association. Frankl, V.E. (1969). The will to meaning: Foundations and applications of logotherapy. New York: The World Publishing Company. Frankl, V.E. (1973). The doctor and the soul: From psychotherapy to logotherapy. New York: Random House. Frankl, V. (2004). On the theory and therapy of mental disorders: An Introduction to Logotherapy and Existential Analysis. New York: Brunner-Routledge. Gillies, J., & Neimeyer, R.A. (2006). Loss, grief, and the search for significance: Toward a model of meaning reconstruction in bereavement. Journal of Constructivist Psychology, 19, 31-65. doi: 10.1080/10720530500311182 Harper, M., O’Connor, R., Dickson, A., & O’Carroll, R. (2011). Mothers continuing bonds and ambivalence to personal mortality after the death of

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their child: An interpretative phenomenological analysis. Psychology, Health & Medicine, 16, 203-214. doi: 10.1080/13548506.20 10.532558 Janoff-Bulman, R. & McPherson Frantz, C. (1997). The impact of trauma on meaning: From meaningless world to meaningful life. In M.J. Power, & C.R. Brewin, The transformation of meaning in psychological therapies: Integrating theory and practice (pp. 91-106). Hoboken, NJ: Wiley. Janzen, L., Cadell, S., & Westues, A. (2003–2004). From death notification through the funeral: Bereaved parents’ experiences and their advice to professionals. Omega, 48, 149-164. doi: 10.2190/6xuw-4pyd-h88q-rq08 Klass, D. (1999). The spiritual lives of bereaved parents. Philadelphia: Brunner/ Mazel. Kreicbergs, U., Valdimarsdottir, U., Onelöv, E., Henter, J.-H., & Steinbeck, G. (2004). Anxiety and depression in parents 4–9 years after the loss of a child owing to malignancy: A population-based follow-up. Psychological Medicine, 34, 1431-1441. doi: 10.1017/S0033291704002740 Kwee, J., & Längle, A. (2013). Phenomenology in psychotherapeutic praxis: An introduction to Personal Existential Analysis. Experiencing EPIS, a Journal of the Existential and Psychoanalytic Institute and Society, 2, 139-163. Laireiter, A., Schirl, C.F., Kimeswenger, I., Längle, A., & Sauer, J. (2000). Zufriedenheit mit Existenzanalyse: Ergebnisse einer katamnestischen Feldstudie zur Patientenbeurteilung von existenzanalytisch-logotherapeutischer Psychotherapie. Existenzanalyse, 17(3), 40-50. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Längle, A. (1994). Sinn-Glaube oder Sinn-Gespür? Zur Differenzierung von ontologischem und existentiellem Sinn in der Logotherapie. Bulletin GLE, 11, 15-20. Längle, A. (2003). The method of “Personal Existential Analysis.” European Psychotherapy, 4, 37-53. Längle, A. (2005). Das Sinnkonzept V. Frankls – ein Beitrag für die gesamte Psychotherapie. In H.G. Petzold, & I. Orth (Eds.), Sinn, Sinnerfahrung, Lebenssinn in Psychologie und Psychotherapie (pp. 403-460). Bielefeld, Germany: Aisthesis. Längle, A. (2012). The Viennese School of Existential Analysis. The search for Meaning and Affirmation of Life. In L. Barnett, G. Madison (Eds.), Existential therapy: Legacy, vibrancy, and dialogue (pp. 159-170). New York: Routledge. Längle, A. (2013). 4th Fundamental Motivation: The fundamental conditions for MEANING in life. Unpublished manuscript, Gesellschaft für Logotherapie und Existenzanalyse, Vienna, Austria. Längle, A., Görtz, A., Rauch, J., Jarosik, H., & Haller, R. (2000). Effektivitätsstudie zur Existenzanalyse: Explorativer Vergleich mit anderen Psychotherapiemethoden im stationären Setting. Existenzanalyse, 17(3), 17-29. Li, J., Hansen Precht, D., Mortensen, P.B., & Olsen, J. (2003). Mortality in parents after death of a child in Denmark: A nationwide follow-up study. Lancet, 361, 363-367. doi: 10.1016/ s0140-6736(03)12387-2 Murphy, S.A. (2008). The loss of a child: Sudden death and extended illness perspectives. In M.S. Stroebe, R.O. Hansson, H. Schut, & W. Stroebe

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(Eds.), Handbook of bereavement research and practice (pp. 375-395). Washington, DC: American Psychological Association. Murphy, S.A., Johnson, L.C., & Lohan, J. (2003). Finding meaning in a child’s violent death: A five-year prospective analysis of parents’ personal narratives and empirical data. Death Studies, 27, 381-404. doi: 10.1080/ 07481180390208621 Murphy, S.A., Tapper, V.J., Johnson, L.C., & Lohan, J. (2003). Suicide ideation among parents bereaved by the violent deaths of their children. Issues in Mental Health Nursing, 24, 5-25. doi: 10.1080/01612840390160603 Nadeau, J.W. (2008/2011). Meaning-making in bereaved families: Assessment, intervention, and future research. In M.S. Stroebe, R.O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp. 511-530). Washington, DC: American Psychological Association. Neimeyer, R. A. (2000). Searching for the meaning of meaning: Grief therapy and the process of reconstruction. Death Studies, 24, 541-558. Pargament, K.I. (1997). The psychology of religion and coping. New York: Guildford. Park, C.L., & Folkman, S. (1997). Meaning in the context of stress and coping. Review of General Psychology, 1, 115-144. Prochaska, J.O. & Norcross, J.C. (2014). Systems of psychotherapy: A transtheoretical analysis (8th ed.). Stamford, CT: Cengage Learning. Rogers, C.H., Floyd, F.J., Seltzer, M.M., Greenberg, J., & Hong, J. (2008). Long-term effects of the death of a child on parents’ adjustment in midlife. Journal of Family Psychology, 22, 203-211. doi: 10.1037/0893-3200.22.2.203 Rohr, R. (2003). Everything belongs (revised & updated). New York, NY: Crossroad Publishing. Steger, M.F., & Frazier, P. (2005). Meaning in life: One link in the chain from religiousness to well-being. Journal of Counseling Psychology, 52, 574-582. doi: 10.1037/0022-0167.52.4.574 Steinert, K. (2001). Wie wirksam ist existenz-analytische Psychotherapie? Erste Ergebnisse einer Effektivitätsstudie zur Existenzanalyse. Existenzanalyse, 18(1), 31-34. Vance, J.C., Boyle, F.M., Najman, J.M., & Thearle, M.J. (2002). Couple distress after sudden infant or perinatal death: A 30-month follow up. Journal of Paediatric Child Health, 38, 368-372. doi: 10.1046/j.1440-1754.2002.00008.x

Chapter 15

Learning to Live with Dying: Families Finding Meaning Amid Terminal Illness Caitlin Sigg Mrs. B, a 54 year-old woman, has been experiencing pain in her upper abdomen for several months now. The pain was particularly pronounced when she was shopping for her 25 year-old daughter’s wedding dress three weeks ago. Although she ascribed the pain to stress at the time, she was quite worried and anxious because she has always lived a relatively healthy life-style with her 57 year-old husband. Mrs. B has undergone various tests throughout the last few weeks, seeking to find answers for the unexplained pain and discomfort. After waiting in her physician’s office for 20 minutes, he finally arrived and revealed the devastating news: Mrs. B had advanced, stage four pancreatic cancer. The physician advised that, although the cancer seems to be localized, it may have also spread to her lymph nodes. She could continue with surgical resection, which provides a survival benefit in patients with small, localized pancreatic tumours. However, in the event that it is metastatic, she would unlikely benefit from surgical resection. Mrs. B sat there and stared at her physician in disbelief, asking herself, “How am I supposed to tell my husband and daughter this news? What will they do without me? Why would God do this to me? This has to be a mistake! I am too young to die!”

The aforementioned case provides only a glimpse into the exceedingly difficult and painful questions that often accompany the diagnosis of a terminal illness. Moreover, the implications of having a family member diagnosed and coping with a terminal illness are multifaceted, as the terminally ill person and their family are increasingly confronted with the task of having to ‘live with death’ for an indeterminate period of time. People with terminal illnesses are those with an “active and progressive disease,” in which curative treatment is neither possible nor appropriate, and consequently, death can reasonably be expected within 12 months (Higginson, 1997, p. 188). Many illnesses, mostly those that are chronic or incurable, do not result in death immediately after diagnosis. Instead, there is often a period of decline, or conversely, a period of improvement in health sometimes follows. Therefore, when someone is terminally ill, it is frequently an exceedingly difficult and ambiguous process (Northcott & Wilson, 2008). The terminally ill person and their family often fluctuate

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between denial and acceptance as circumstances – and their capacity to find and ascribe meaning to those circumstances – change (Nadeau, 2001). Recent research (e.g., Breitbart et al., 2004) suggests that an exploration of existential issues – particularly while experiencing suffering or confronting terminal illness – can encourage dying persons to engage in meaningful reflection towards the end of life: “Meaning can be found in life literally up to the last moment, up to the last breath, in the face of death” (Frankl, 1988, p. 76). Nevertheless, the question arises: How can people possibly learn to live with dying, especially while suffering from a terminal illness? In the context of this question, this chapter explores coping strategies and meaning-making practices for both the individual suffering with a terminal illness and his or her family members. The dying process affects both the person with a life-threatening illness and the entire family system, while awaiting loss and separation. Therefore, the need for making sense of living with dying is no longer negligible, and its discovery becomes imbued with a sense of urgency and significance, especially as death approaches. In order to fully explore how to live with dying, this chapter will address topics such conceptualizing terminal illness through family systems theory, negative attitudes toward death and dying, coping in transitional phases of life living with a terminal illness, and various existential concepts and accompanying meaning-making practices. Attitudes towards Dying and Death Over the past few decades, there have been several dramatic changes that have shifted the societal attitude toward death and dying. By assessing these changes, we can see how we have developed social attitudes that make living with dying more challenging. Our different attitudes have prompted our unfamiliarity with dying and death. Not only has the place in which dying and death take place transformed dramatically, but the arrival of life-extending medical technologies has also drastically influenced our ways of viewing dying and death. Attitudes of Death as ‘Medical Failure’: Medicalization of Death and Dying in Canada It is important to recognize that death was formerly considered a social and community event that was experienced with greater frequency in Canada than it is today. In other words, death remained a highly visible

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fact of life, as epidemics, war, infections, and childbirth took the vast majority of Canadians’ lives before the mid-twentieth century (Northcott & Wilson, 2008; Wilson et al., 1998). However, the period of sustained economic prosperity that followed World War II contributed to substantial changes in life and death in Canada, as both government funds and public funding for health care increased (Taylor, 2009). Prior to World War II, healthcare in Canada was privately funded and delivered, with the exception of services provided to the poor that were financed by local governments (Taylor, 2009). The rise of National Health Grants promoted growth, and improved the quality of care in hospitals, during the 1940s and 1950s in Canada (Arnup, 2013). For instance, the passage of the Hospital Insurance and Diagnostic Services Act in 1957 provided publicly funded hospital coverage, which was made available to all Canadians by 1961. Similarly, the Medical Care Act (1966) extended coverage to include physicians’ services, and thus people were able to receive an array of services for themselves and their families (Arnup, 2013). In many ways, the post Second World War era led to growing public and professional expectations for the health-care system in Canada (Smith & Nickel, 2003). This period was marked by an upsurge in population with the baby boom, as well as sweeping expansion of hospitals, increased use of physicians’ services and a variety of significant medical breakthroughs (Arnup, 2013; Taylor, 2009). The new developments in medical technologies and procedures during this period seemed to advocate the boundless powers of science and medicine to control and cure illness: “As physicians, bolstered by advances in medical science, focused increasingly on curative measures, death came to be seen as a medical failure” (Arnup, 2013, p. 8). Consequently, as faith in the healthcare system continued to rise, science became a new source of hope and power, and in some respects, replaced religion as a source of knowledge and power (Arnup, 2013; Kübler-Ross, 1969). Likewise, it led to a shift from home to hospital, which often meant the patient dying alone in an unfamiliar environment, separated from his or her friends and family (Kübler-Ross, 1969). As death and dying became segregated to the confines of the hospital, it seemingly contributed to our perverse attitudes and attempts to “relegate death the periphery of our lives” (DeSpelder & Strickland, 2005, p. 5). Attitudes towards Dying and Death: Fear, Anxiety and Avoidance Attitudes towards death itself are extremely varied, ranging from avoidance of death to acceptance of death as an inevitable part of life

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(Neimeyer, Wittkowski, & Moser, 2004). In large part, today’s Western society has assumed the former stance towards death, which seeks to deny, repress, and avoid this dimension of life altogether. Much of the contemporary literature demonstrates how modern Western society is experiencing a period marked by the denial and fear of death (Becker, 1973; Buckman, 1998). As Cozzolino and colleagues (2014) claim, “When given a choice to actively contemplate mortality or to deny death altogether, most individuals would likely choose the latter option” (p. 418). The fear of death has various dimensions and is largely subject to one’s background and previous experience. For instance, the incertitude of death, the loss of self, pain and suffering, and the wellbeing of surviving family members are just some of the sources where this fear of death can originate (Wong, Rekker, & Gesser, 1994; Yalom, 1998). A person’s experience of death and bereavement is the primary factor that influences their understanding of death (Morgan, 1995). Parental attitudes, and the attitudes of other family members form the values, behaviours, and ways in which children understand and experience dying and death: “Much of what we understand and come to anticipate about dying and death is gained during our formative years” (Northcott & Wilson, 2008, p. 68). The reactions of family members to the deaths of grandparents, relatives, and even family pets, impart powerful messages to children about dying and death (DeSpelder & Strickland, 2005). In some cases, children are protected from the dying and death experience, as they may not be permitted visitation with dying persons or attendance to funeral services (Northcott & Wilson, 2008). In these circumstances, they may learn to react to dying and death with avoidance, anxiety, despair, anger, shame or fear (Northcott & Wilson, 2008; Martínez De Pisón, 2002). Conversely, children who are engaged in the process of dying and death will more often learn how to cope with such difficult life situations, while developing a positive outlook on the notion of the end-of-life (Webb, 1997). Notwithstanding, the fear of death and subsequently the manifestation of death anxiety and avoidance, is considered to be a common phenomenon among the human condition (Bachner, O’Rourke, & Carmel, 2011; Yalom, 1998). Death anxiety is broadly defined as a complex representation of varied thought processes and emotions (e.g., the dread of death, the revulsion of physical and mental deterioration, and the sadness about the eventual loss of self), whereas, death avoidance is considered a defense mechanism that seeks to keep death away from one’s consciousness (Wong, 2008; Yalom, 2008).

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When confronted by the idea of mortality, an individual may begin to gradually retreat from life in order to avoid feeling or thinking about impending death. At the same time, it may serve to assist the individual in detaching from loved ones, in order to make the process of dying “easier” for him or herself, as well as their family. For instance, shortly after receiving her diagnosis of pancreatic cancer, Mrs. B stopped returning phone calls and emails from friends and family. Instead of engaging in pleasurable activities, she currently lays around at home, watching television until she has to attend her medical appointments. When she attempts to approach her husband about her prognosis, he often pretends that nothing is wrong, and avoids engaging in discussions around her illness or impending death. Moreover, he becomes irritable, sharply advising her to “stop worrying!” While her daughter has offered to move back home to help transport her mother to different appointments, Mrs. B proceeds to downplay her symptoms because she does not want to create tension with her husband or worry her daughter. She also does not want to confront the possibility that she may be dying. Accordingly, she continues to watch television and close herself from others. As demonstrated in the vignette, dying persons may retreat from fully living in the present, in a vain attempt to seek mastery over death. Similarly, dying persons may detach from intimate relationships, in hopes of reducing the anxiety associated with the complete separation from oneself and loved ones (Firestone & Catlett, 2009). It is this separation, or detachment from loved ones, that seemingly serves as another catalyst to the fear of dying and death. In a recent study conducted by Bath (2010), the fear of death in relation to death and dying of self (and death and dying of others) was investigated through the use of thematic analysis. Bath (2010) espoused themes that were categorized under two broad features of death: Themes around the event of death (e.g., uncertainty of death, unknown afterlife, finality of death, and unfilled life) and themes about the pain and suffering of death (e.g., pain of death and loss of loved ones). As well, the study revealed that regardless of the degree to which people fear their own death, most people actually fear the death and dying of others more (Bath, 2010). This key finding has important implications for families experiencing the dying of another family member. More specifically, it suggests that the separation from others through death (either one’s own death or the death of another loved one) is more fearsome than the event of death itself. In large part, it is how one chooses to deal with

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the process of dying and the feelings of anxiety, including the avoidant behaviours, which will ultimately determine how the process of “living while dying” will be experienced – that is, in either a negative or positive fashion. Attitudes about the Awareness of Dying Nowadays, the hospital milieu and the family do not speak openly about impending death to the dying person, and the process of bereavement is almost avoided (Martínez De Pisón, 2002). The difficulty in talking about dying from a terminal prognosis creates various chasms in intimate relationships, depriving the seriously ill person’s sense of his or her normalcy, especially during a time when they have a strong need to discuss and share their experiences (Boog & Tester, 2008). In Mrs. B’s case, she feels she is not able to share how she would like to die because her husband and daughter do not want to consider this as a possible outcome. To complicate matters further, she feels reluctant to express her innermost thoughts and feelings to them as she continues to fluctuate between denying and accepting the reality that she may die. Moreover, she often feels her needs are overlooked, particularly since her family is fixated on her seeking further treatment and staying in the hospital. The struggle to address and communicate the dying experience was first examined by sociologists, Glaser and Strauss (1965, 1968), who conducted a study of the social processes of dying in the hospital setting. Through in-depth interviews, participant observation and grounded theory analysis, they revealed a social process they termed ‘awareness contexts’ (as shown in figure 1). The four types of awareness contexts include: (1) closed awareness – where the dying person (‘patient’) is unaware of his or her approaching death, although others such as health care professionals, friends and family may know that dying is manifest; (2) suspected awareness – where the dying person suspects what others know, and attempts to confirm or undermine that suspicion; (3) mutual pretense awareness – where family and medical personnel avoid direct communication about the person’s condition by sidestepping the topic in various ways; and (4) open awareness – where there is openness and veracity about the trajectory of dying and death among all involved, including the dying person, their family members and the respective medical personnel (Glaser & Strauss, 1965). In contrast to the other awareness contexts, an environment of open awareness provides openness about the trajectory of dying and death

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Figure 1. Contexts of Awareness in the Process of Dying Note. Adapted from Awareness of Dying by B. G. Glaser and A. L. Strauss, 1965, Chicago, IL: Aldine Publishing Company.

among all involved. The dying person is cognizant of their progressively declining state and the inevitability of their impending death; similarly, his or her family is aware and act openly towards it. While open awareness does not necessarily make death easier to accept or communication less cumbersome, it allows for the possibility of providing support in ways that are not readily available through the other contexts (Timmermans, 1994). For instance, open awareness allows the dying person to share their innermost thoughts and feelings with family, particularly their concerns in anticipation of learning to live with dying. It is reasonable to suggest that Mrs. B is longing to enact a milieu of open awareness with her family, but she is seemingly experiencing mutual pretense with them. This is evidenced in her husband’s attempt to avoid discussing the reality of her impending death, as well as her daughter’s tendency to explore various treatment options that are unlikely to provide a cure. Attitudes Surrounding the Place of Dying and Death Not long ago, dying and death were anticipated more often, and with greater incidence, than they are today: “To be born and to die were two essential dimensions of every family experience, as these events usually happened at home” (Martínez De Pisón, 2002, p. 32). Now, at the beginning of the twenty-first century, death is often considered

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unanticipated, except in advanced old age. In 2011, Canadians lived an average of 81.7 years, which is an increase of 24.6 years since 1921 (Statistics Canada, 2014). While modern medicine and science are making impressive advancements in the service of prolonging life (Auger, Le Serbon, Rostila, 2015), dying these days is grimmer in many ways: Namely, it is more mechanical, lonely and private because dying persons are habitually taken out of their proverbial environment and thrust into the hospital setting (Kübler-Ross, 1995). The majority of terminally ill patients desire to die in their home (Higginson & Sen-Gupta, 2000), where a better quality of life and sense of familiarity can be sustained (Wright et al., 2010). Studies reveal that those who are able to die at home appear to spend their last days in greater peace, nearly always with family around them, and with pain controlled to a comparable level to those who die in hospital (Gomes, Calanzani, Koffman, & Higginson, 2015). While most people dying of cancer prefer to die at home, and while family often supports this wish, it is seldom met (Gomes et al., 2015). The nature of an illness or lack of social support can make this an exceedingly difficult or unfeasible endeavour for many people and families experiencing serious, lifethreatening illness. For instance, when a terminally ill person’s medical condition begins to deteriorate, there may be increased physical safety concerns, and subsequently, 24-hour demands of end-of-life care. This often means the primary caregiver will need additional in-home support, or for the person to be placed in a hospice or other care facility such as the hospital. Indeed, terminally ill persons often prefer the former, but the latter is often the only option in ensuring that adequate medical care is received. Attitudes Toward Life-Extending Technologies In many ways, medical technology becomes another factor in our diminished familiarity with dying and death. For instance, in institutional healthcare settings, a dying person is regularly surrounded by an array of life-extending technologies, and thus dignity may be lessened amid technology focused exclusively on sustaining one’s biological functioning. As Kübler-Ross (1969) perceptively stated decades ago, “[Dying persons] may cry for rest, peace, and dignity, but [they] will get infusions, transfusions, a heart machine, or tracheostomy if necessary” (p. 22). The dying person is practically deprived of the possibility of naturally integrating his or her own death as the last stage of life (Martínez De Pisón,

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1997). This is exemplified, and becomes particularly salient, when the dying person is connected to sophisticated machinery designed to monitor his or her life until their last breath fades. At the same time, medical equipment tends to create distance between family and friends from the person who is dying (Kübler-Ross, 1969). The approach that, “What can be done, should be done” increases the prospect that different technologies will be employed even when the success or cure is doubtful (DeSpelder & Strickland, 2005). When death does arrive, it may seem surprising. Similarly, there is a tendency to view death as an event that can be postponed indefinitely, rather than as a customary, natural part of life (Boog & tester, 2008; DeSpelder & Strickland, 2005). On the other hand, some family members might find that death was a “blessing” for the deceased because it brought his or her suffering to end. This is similar to the case with Mrs. B’s family, who are advocating for aggressive treatment. Indeed, she sees their perspective, but she is slowly coming to terms that this may not be an option, especially since she just received news that her tumour is metastatic. Accordingly, she is not interested in staying in the hospital for a prolonged period of time. When she was a teenager, her mother had suffered from lung cancer. At that time, her mother was placed in the hospital for several months, followed by a short stay in the local hospice. The memory of her mother connected to the various machines made her shudder, as she recalled how unhappy and hopeless she appeared. For this reason, she continues to contemplate how to move forward and cope with the recent news that she likely has only months to live. Family Systems Theory: Death and Dying as a Family Event A brief overview of family systems theory will provide a framework to guide the remaining sections of this chapter and further assist in understanding how terminal illness affects the family system. It is important to recognize that death and dying inevitably interrupts the family system and requires adjustment of all family members in confronting the new family reality (Mehta, Cohen, & Chan, 2009). When a family member is confronted with a terminal illness like Mrs. B., the impending death presents a crisis and challenge to the entire family system. Family members, such as her daughter, almost unavoidably take on caregiving roles as they deal with perpetual crises such as pain management or frequent hospitalizations.

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Family Systems Theory Family systems theory focuses on the interaction between members of the family, as well as between the family and other systems (Bowen, 1976). The family is understood as a small group of interrelated and interdependent individual elements, making the family a system. The theory further proposes that a change in one family member will influence the entire system (Wright & Leahey, 2005). In other words, the family is seen as an interactive unit, and thus no individual member exists in isolation from another (Boss et al., 1993). Therefore, when a family member is diagnosed with a terminal illness, the family has to reorganize itself. The approaching loss of a family member presents an immense challenge, as the family must try to find new balance during the illness and then in the absence of an integral member. Furthermore, caring for a dying family member in the home also forces the family to reorganize as they learn the intricacies of caring for the dying (Mehta et al., 2009). Hierarchies and Subsystems. The notion of hierarchies describes how families organize themselves into various smaller units or subsystems that collectively comprise the larger family system (Minuchin, 1974). There are often many subsystems with a family system. Two or more family members interrelating can form a subsystem. For example, sibling, parental, and spousal subsystems may exist within a family system (i.e., Mrs. B and her husband form a spousal subsystem, while she forms a parental subsystem with her daughter.). However, it is important to recognize that families today are increasingly multifaceted, with divorce and remarriage redefining the family system and constructing new subsystems. Homeostasis. Another important concept in family systems theory maintains that changes in one part of the system are accompanied by compensatory changes in another part (Sholevar & Perkel, 1990). This is apparent in Mrs. B’s family, as they are struggling with uncertainty related to her symptom progression and management. Furthermore, her life expectancy may place them in a constant state of change and flux. Families that have a member with a terminal prognosis often grapple with finding a balance between stability and change. Accordingly, reorganization of the family system, as well as roles and boundaries, may arise in an attempt to reclaim a sense of balance between change and stability. Boundaries. Families create boundaries that influence the movement of people into and out of the system, regulating the flow of information

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into and out of the family (Boss et al., 1993). It is the understanding of the family’s boundaries and the degree to which they are permeable that allows healthcare professionals and other systems to assess their ability to make an impact on the family unit (Mehta et al., 2009). For example, Mrs. B’s family have permeable boundaries, as they appear open to accepting resources and allowing contact with other systems (i.e., the hospital) more readily. In contrast, a family system with more rigid boundaries typically prevents exchange with other systems, so family members remain enclosed in the comfort or discomfort of their personal system. In other words, they may not be open to medical or palliative care consultants when issues such as pain need better management. While Mrs. B’s husband seems to have rigid boundaries (i.e., he is reluctant to discuss her prognosis and meet with medical professionals), these behaviours are likely related to his current coping strategies. Coping with Terminal Illness: Learning to Live with Dying The diagnosis of a potentially fatal illness evokes a variety of responses in both the dying person and their respective family members. While there are various theories and models (both individual and family-based) that seek to explain coping with terminal illness, it is important to recognize the highly individual nature of coping styles. Furthermore, it would be amiss to suggest that the models discussed below can be applied indiscriminately, as anticipatory loss is sometimes more painful and challenging for families than the actual death of a family member. Often anticipatory loss is experienced by family members for another loved one’s impending death due to illness, but it can also be experienced by dying individuals themselves (Kübler-Ross, 1995; Rosen, 1998). The models below provide a basis for understanding some of the coping strategies employed by both the dying person and their family in the quest for learning to live with dying. Individual-Based Theories After working extensively with dying patients, Kübler-Ross (1969) developed the renowned description of the emotional and psychological responses of life-threatening illness (as shown in figure 2). Many people have some knowledge about the stages associated with Kübler-Ross’ model: (1) denial – individuals believe the diagnosis is somehow

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mistaken; (2) anger – as the effects of denial begin to wane, it is redirected and expressed as anger, resentment, or hostility; (3) bargaining – individuals attempt to postpone or avoid the inevitable by entering some sort of agreement, typically with God; (4) depression – individuals confront the inevitability and reality of the loss, or impending loss, and their own helplessness to change it, and; (5) acceptance – individuals may find some sense of resolution that is often characterized by neutrality. The notion that these five stages occur in a linear progression – and that a person is supposed to move through them sequentially and eventually arrive at acceptance – is sometimes presumed to be somewhat of a prescription for how people should cope with dying (Kearny & Hyle, 2006). However, Kübler-Ross maintained that during the course of an illness, people tend to fluctuate between the various aforementioned stages. Furthermore, people may experience different stages simultaneously.

Denial

Acceptance

Depression

Anger

Bargaining

Figure 2. Five Stages of Loss and Grief Note. Adapted from On Death and Dying by E. Kübler-Ross, 1969, New York: Macmillan

For instance, while Mrs. B acknowledged the diagnosis in front of her physician, anger and feelings of vulnerability presented shortly thereafter. Moreover, Mrs. B responded with avoidance and denial, attempting to suppress the reality by excluding it from her consciousness. Psychologically, this was evidenced in her questioning (e.g., “This has to be

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a mistake”). In terms of her preliminary behaviours, she attempted to deny the diagnosis and likelihood of her impending death by watching television and isolating herself from friends and family. Similarly, she became exasperated by her husband’s efforts to discuss the diagnosis and her daughter’s attempts to explore possible treatment protocols. These expressions of anger and irritation seemingly served to quell the anxiety related to the underlying issue: Mrs. B’s encounter with serious illness and what it means for her continued existence. Family-Based Theories According to Rosen (1998), just as the terminally ill person experiences various reactions concerning their diagnosis, a family’s response to a fatal illness can be roughly divided into three phases (see figure 3): (1) the preparatory phase, which begins when symptoms first appear and continues through the initial diagnoses; (2) the middle phase, which can be quite drawn-out, occurs when the family lives with the reality and caretaking tasks of the fatal illness; and (3) the final stage, manifests when the family accepts the impending death and concludes the process of saying farewell. It is important to suggest, however, that this latter phase can be an arduous process, as not all family members will accept the impending death of a loved one in a similar manner. Prepatory Phase

Middle Phase

Final Stage

Figure 3. Stages of Familial Responses to Terminal Illness Note. Adapted from Families Facing Death by E. J. Rosen, 1998, San Francisco: Jossey-Bass.

In addition, Rosen (1998) maintained that the phases of adaptation do not necessarily correspond with the physical course of the illness, though in many cases they do. More specifically, the family’s response is contingent on two other factors that are not directly related to the individual’s physical condition: (1) the structure of the family system before the illness, which includes openness, level of functioning, and the role played by the individual with the illness in that system, and; (2) the family’s perception of the course of illness, which may not be synonymous with the actuality of its course. In terms of Mrs. B’s family, her husband and daughter are currently at the preparatory phase, as they begin to address the prospect of loss

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with the emergence of the illness. Although she has only recently been diagnosed, her family is already making attempts to adapt to preserve the threatened homeostasis (Rosen, 1998). For example, her daughter has offered several times to move home to assume a caretaker role (“Mom, let me take care of you! I will take a temporary leave from work and help you with everything”). This process of adaption will become even more prevalent if Mrs. B has to stay in the hospital, especially since she is typically the caretaker of her husband, attending to household duties. Similarly, Mrs. B provides her daughter with emotional support on a regular basis, as her daughter struggles with anxiety. Throughout this preparatory phase of her illness – the period of preliminary symptoms, diagnosis, treatment planning, and prognosis – the family will likely become disorganized (Rosen, 1998). Families Finding Meaning: Making Sense of Living with Dying When faced with a terminal illness and the prognosis of dying, many questions arise such as: “Why is this happening to my family member? Why can it not be me instead of him or her? Why is this happening to our family? How can we cope with this?” These questions, and the emotions and actions accompanying them, are a normal part of the process, although by no means easy to answer. This section will explore the nature of these types of questions and ways that individuals find and make meaning while living with dying. Existential Questions. There are a myriad of questions that both the individual and his or her family member experience when faced with dying and death. Some are more physical or logistical (e.g., “Is dying going to hurt? Who is going to care for this person? What will the plans for the funeral be?”), while others are more existential in nature (e.g., “Have I lived a ‘good’ life? What kind of legacy am I leaving behind? What will happen when I die?”). Existential questions are often defined as inquiries concerning the essence of what it means to be alive: “What is my greater purpose?” “How should I live my life?” “What is death?” “What happens when we die?” These kinds of questions about meaning usually arise from the apprehension caused by the prospect of dying. At some point in life, whether it is a personal encounter with death, a catastrophic event, or a major crossroad, the existential question of meaning will be activated (Wong, 2009). The discovery that a person is dying from terminal illness inevitably triggers this question of meaning,

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making one take inventory of his or her life. Hall (1997) suggested that, “the search for meaning is stimulated by fear and depression that accompanies the realization that one’s life is threatened or nearly over” (p. 84). Once this fear is recognized and acknowledged, illness has the potential to establish new directions by questioning older directions. Acknowledging Dying. For the person who is dying, acknowledging the fact that death is imminent is perhaps the first, and most difficult, step in living with dying. Moreover, if the onset of the illness is sudden or unexpected, as in the case of Mrs. B, a surplus of emotions and grief reactions will likely follow the initial diagnosis. Indeed, this is a natural and necessary response to painful news (Yalom, 1998). Arriving at the acceptance of death is also a challenging process, as it exists on a continuum. For instance, in recent years, Wong and his colleagues (1994) have highlighted the existential quest for death acceptance. More specifically, they developed the Death Attitude Profile, which recognizes three distinctive types of death acceptance: (1) neutral death acceptance – confronting death in a rational manner (as an inevitable end of every biological life) and attempting to make the most of this present life through creative works; (2) approach acceptance – rooted in transpersonal religious or spiritual beliefs in a desirable afterlife, and; (3) escape acceptance – considering death as a better alternative to a painful existence. Similar to self-awareness and self-acceptance of imminent death, acknowledging that a loved one is dying is not an easy undertaking, particularly since it requires families to envision a future without that person. However, to let go of the future allows families to live only in the present with the dying person. The same is true for the dying person; namely, if he or she can let go of the future, they can remain fully in the present. All the same, there is no easy or linear way to approach and accept death, as the dying person and his or her family will likely struggle with this task until death arrives. Moreover, the family may continue to struggle with the loss – and making sense of it – following the death. It is important to recognize, however, that by working towards acknowledging and accepting the reality of impending loss, instead of denying it, the dying person and family members have the possibility of experiencing a different, and perhaps richer, way of living. The arena of the unknown invites both the dying person and his or her family to question and search for the meaning of life, in the past, present and future. Accepting Death. Life and death are paradoxical in nature. In other words, life is viewed as a beginning and a cause for festivity, whereas death is viewed as an end to be evaded and a cause for lamentation:

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“Life and death are frequently juxtaposed as polar opposites” (Manis & Bodenhorn, 2006, p. 197). As Wong (2009) aptly states, “there is no life without death and there is no death without life” (368). In his other work, Wong’s Meaning Management Theory (MMT) (2007) recognizes that death anxiety can have either a negative or a positive influence, depending on how one reacts to it. Although we can never escape from the reality of death, Wong (2009) explains that, “we can always use our capacity for meaning, spirituality and narrative construction to transform death anxiety” (368). Moreover, he suggests that, “if we regard death as a reminder of our own mortality and the need to live authentically, then death anxiety will not only facilitate death acceptance, but also encourage self-actualization and self-transcendence” (Wong, 2009, p.368). Understood in this manner, it becomes apparent that we need to confront and embrace death in order to live in a meaningful way (Kuhl, 2002; Wong, 2007; Wong, 2009, Yalom, 1980). This insight can breathe new life into the surviving family members own meaning-making processes. In an enigmatic way, losing a family member can provide the gift of understanding of how one might live his or her own life more fully and meaningfully. Peace through Spiritual and Religious Practice. For many people, spirituality and religious faith are important components in coping with life-threatening illness. Religion often attends to ‘external’ spheres (e.g., communal worship and traditional practices), while spirituality seemingly attends to ‘internal’ spheres (e.g., one’s inner search for connection, meaning and/or purpose in life). Generally speaking, spirituality is “the experience of connection,” with a reality, presence or power that gives meaning and purpose to one’s life (Jones, 1995, p. 2). Persons confronting death and their respective families may be comforted by a faith or spirituality that assists them in coping with impending loss and making sense of existence, even when it includes one’s own death and the death of a loved one (Kaut, 2002). According to Hall (1997), people in the early stages of terminal illness often find comfort and healing through prayer, meditation, or other spiritual experiences. Similarly, Johnson and colleagues (2011) examined the relationship between anxiety and depression, and two domains of spirituality—past spiritual experiences (i.e. spiritual history) and current spiritual wellbeing in patients with serious illness. In doing so, they revealed that greater spiritual wellbeing – including both beliefs about the role of faith in illness and meaning, peace, and purpose in life – were linked with fewer symptoms of anxiety. The study also revealed that

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more past negative religious experiences were associated with increased symptoms of anxiety and depression (Johnson et al., 2011). Although Mrs. B was raised Catholic, she has not been to Church since the death of her mother. At the time, she felt her faith had been shaken. Therefore, she decided that she would proceed to maintain some spiritual practices such as prayer, but she refused to attend Church. However, she is now questioning this decision as she longs for something to instill hope. She recently spoke to the Chaplain at the hospital, who took some time to discuss and explore her concerns. After a lengthy discussion, she agreed to participate in confession with him. Afterwards, she felt a sense of peace and solace, which replaced her feelings of anxiety and anger. Despite her initial hesitation to reconnect with her religion and spirituality, it seemingly played an important role in her quest for meaning. Connecting through Rituals. The incorporation of ritual can be influential in both the process of dying, death, and bereavement. Ritual can be described as, “Behaviours that are created anew as part of an interventions designed to help the family’s healing process” (Rosen, 1998, p. 144). Rituals can be recreated during the dying process, in order to enact meaningful activities shared by the family and dying person. For instance, Mrs. B has suggested having a ‘celebration of life,’ in which close friends and family will be invited to connect and recall the story of her life. She is not interested in having a traditional funeral following her death, but rather would like to take part in a celebration prior to her death, recounting both the struggles and joys to assist her family in developing a sense of meaning through the reconstruction of her life narrative. This specific ritual may not be appropriate for all dying persons. Other examples might include letting–go rituals, rituals for unresolved issues such as anger, regret, or sadness, and purification rituals. Conclusion and Discussion This chapter has considered the process of dying and death in its contemporary context, demonstrating how our attitudes have challenged our acceptance of impending death. In addition, we reviewed how terminal illness affects the family system, as well as individual and familybased theories of coping and meaning-making practices for both the individual suffering with a terminal illness and his or her family members. Some of these strategies might include acknowledging and

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accepting imminent death, spiritual or religious practices, or the enactment of renewing rituals. The trajectory of life with terminal illness is contingent upon many factors, and the process of dying can therefore take place over variable lengths of time. As examined through the case of Mrs. B., living with dying is a difficult process for both the individual facing imminent death, as well as his or her family members. If Mrs. B and her family can journey towards acceptance (Kübler-Ross, 1969) and develop an open awareness with regards to death (Glaser & Strauss, 1965), then Mrs. B’s trajectory to the end of her life might in fact give her and her family the opportunity, perhaps even the gift, of living the final months of her life both authentically and meaningfully. It is important to note, however, that the clinical case discussed in this chapter focused on the dying process of a middle-aged person. For a family confronting the imminent death of a child, this is a completely different process because of the vicissitudes in the meaning-making process. In other words, to make sense of a child living with dying is much more different in nature, largely because it is considered to reside particularly outside of the norm. While dying, death and bereavement are feared and seemingly thwarted from our consciousness through denial, they are essential to human development, and thus, “human beings must integrate death and dying into their lives in order to become fully human” (Martínez De Pisón, 2002, p. 28). Reflection Questions 1) The death of a child is a great tragedy in a family’s life. Based on what you may have heard or seen in the media, what are some things that families who have lost a child done in order to turn the tragedy into something meaningful? 2) If you were a therapist working with a family who had a terminally ill child, based on this chapter, what sort of approach would you take to working with this family? Glossary Anticipatory loss (or grief): refers to a range of emotional responses (separation anxiety, existential aloneness, denial sadness, anger,

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resentment, guilt, and desperation) that occurs before an impending loss. Awareness Contexts: Glaser and Strauss discovered four distinct awareness contexts: (i.e., closed awareness, suspected awareness, mutual pretense awareness, and open awareness) that had implications for the quality of the experience for dying patients and their families, as well as nurses, physicians, and other hospital staff. Death Attitude Profile: questionnaire containing various statements related to different attitudes toward death. Family Systems Theory: a theory introduced by Dr. Murray Bowen that suggests that individuals cannot be understood in isolation from one another, but rather as a part of their family, as the family is an emotional unit. Hierarchies: a concept from family systems therapy that refers to how families organize themselves into various smaller units (subsystems) that form the larger family system. Meaning-Making: the process of how a person interprets, understands, or make sense of life events, relationships, and the self. Meaning Management Theory (MMT): a comprehensive psychological theory developed by Dr. Paul Wong about how to manage various meaning-related processes to meet our basic needs for survival and happiness. Permeable: a concept from family systems theory that refers to the degree to which the family system is open; specifically, the ability to enter and exit the system. Subsystems: a concept from family systems theory that refers to the smaller units in the larger system, which shares characteristics with the larger system.

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Kaut, K.P. (2002). Religion, spirituality, and existentialism near the end of life: implications for assessment and applications. American behavioural Science, 46(s), 220-234. Kearny, K.S., & Hyle, A.E. (2006). A look through the Kübler-Ross theoretical lens. In V.A. Anfara, Jr., & N.T. Mertz (Eds.), Theoretical Frameworks in Qualitative Research (pp. 109-128). Thousand Oaks, CA: Sage Publications Ltd. Kübler-Ross, E. (1969). On death and dying. New York: Macmillan Kübler-Ross, E. (1995). Death Is of Vital Importance: On Life, Death and Life after Death. Barrytown, NY: Station Hill. Kuhl, D. (2002). What dying people want: Practical wisdom for the end of life. Toronto: Doubleday Canada. Martínez De Pisón, R. (1997). Création et liberté: Essai d’anthropologie chrétienne. Montreal: Médiaspaul. Martínez De Pisón, R. (2002). Shame, death, and dying. Pastoral Psychology, 51(1), 27-40. Manis, A., & Bodenhorn, N. (2006). Preparation for counseling adults with terminal illness: Personal and professional parallels. Counseling and Values, 50, 197-207. Metha, A., Cohen, R., & Chan, L. (2009). Palliative care: A need for a family systems approach. Palliative and Supportive Care, 7, 235-243. Minuchin, S. (1974). Families and family therapy. Cambridge, MA: Harvard University Press. Nadeau, J.W. (2001). Family construction of meaning. In R.A. Neimeyer (Ed.), Meaning reconstruction and the experience of loss (pp. 95-112). Washington, DC: American Psychological Association. Neimeyer, R.A., Wittkowski, J., & Moser, R.P. (2004). Psychological research on death attitudes: An overview and evaluation. Death Studies, 28(4), 309-340. Northcott, H.C., & Wilson, D.M. (2008). Dying and death in Canada. (2nd ed.). Peterborough, ON: Broadview Press. Rosen, E.J. (1998). Families Facing Death: A Guide for Healthcare Professionals and Volunteers. San Francisco: Jossey-Bass. Taylor, M.G. (2009). Health insurance and Canadian public policy (2nd ed.). Montreal: McGill-Queens University Press. Timmermans, S. (1994). Dying of awareness: the theory of awareness contexts revisited. Sociology of Health & Illness, 16(3), 322-339. Sholevar, G.P. & Perkel, R. (1990). Family systems intervention and physical illness. General Hospital Psychiatry, 12, 363-372. Yalom, I. (1980). Existential psychotherapy. New York: Basic Books. Webb, M. (1997). The good death: The new American search to reshape the end of life. New York: Bantam Books. Wong, P.T.P., Reker, G.T., & Gesser, G. (1994). Death Attitude Profile Revised: A multidimensional measure of attitudes toward death. In R.A. Neimeyer (Ed.), Death anxiety handbook: Research instrumentation and application (pp. 121-148). Washington, DC: Taylor and Francisco. Wong, P.T.P. (2007). Meaning management theory and death acceptance. In A. Tomer, E. Grafton, & P.T.P. Wong (Eds.), Death attitudes: Existential & spiritual issues. Mahwah, NJ: Lawrence Erlbaum Associates.

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Wong, P.T.P. (2009). Positive existential psychology. In S. Lopez (Ed.), Encyclopedia of positive psychology. Oxford: Blackwell. Wright, A.A., Keating, N.L., Balboni, T.A., Matulonis, U.A., Block, S.D., & Prigerson, H.G. (2010). Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. Journal of Clinical Oncology, 28, 4457-4464. Wright, M., & Leahey, M. (2005). Nurses and families. A guide to family assessment and intervention. (4th ed.) Philadelphia: F.A. Davis. Yalom, I.D. (1998). Existential Psychotherapy. In B. Yalom (Ed.), The Yalom reader: Selections from the work of a master therapist and storyteller (p. 167265). New York: BasicBooks. Yalom, I.D. (2008). Staring at the Sun: Overcoming the Dread of Death. San Francisco, CA: Jossey-Bass.

Chapter 16

Aging Family Members  The Importance of Preserving Meaning Stephanie Yamin

Most people are not surprised to hear that our population is aging. One can easily compare previous generations and conclude that people are deciding to have fewer children and men and women are living longer. A lower birth rate, as well as increased longevity has certainly contributed to a shift in Canada’s population pyramid (refer to Figure 1; Statistics Canada, 2015). The shifting pyramid demonstrates that, if the current birth rate remains relatively stable, there will be a significant increase in the number of older adults, over the age of 65 years, by the years 2036 and 2061. Other projections have examined the percent of the population over the age of 65 (refer to Table 1; Statistics Canada, 2015) under several growth scenarios. However, the low to medium growth projections are likely to be representative if the current trends in birth and immigration rate in Canada persist. Thus, it is expected that, by 2036, nearly a quarter of the population will be over the age of 65 years. In addition, those over the age of 80 years are the fastest growing segment of the older adult population (refer to Figure 2; Statistics Canada, 2015). Researchers and analysts examining population trends lay on a continuum claiming, on one end, an alarmist trend that may result in catastrophic costs to the healthcare system and, on the other end, a belief that our infrastructure and services will simply adapt to the changing trends (Chappell, 2011). Certainly, older adults use the health care system at a higher rate than the rest of the population. For the example, the Ontario government currently spends over half of its budget on adults over the age of 65 years and this number is expected to rise over the next few decades (Ontario Ministry of Finance, 2014). As spending on older adults is increasing, policy makers are exploring alternative care options for those over the age of 65, rather than the status quo. Understanding the care needs of older adults is of uttermost importance when exploring this topic. As people age, there is an increased incidence of chronic conditions (see Table 2; Statistics Canada, 2003). The most common chronic

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conditions associated with older age include diabetes, heart disease, arthritis, high blood pressure, and dementia (CIHI, 2009; CSHA, 1994). The vast majority of the population over the age of 65 years have at least one chronic condition, and those over the age of 80 years usually have more than one chronic condition that needs to be managed (Chappell, 2011). Chronic pain is also associated with older age, since 27% of older adults report suffering from pain on a regular basis. However, only a proportion of those suffering from chronic pain stated that the pain prevented them from doing activities (Statistics Canada 2008, 2010). In contrast to popular belief, having a chronic condition or suffering from chronic pain does not equate with disability, that is, it does not necessarily cause limitations on a person’s functioning (Partridge, Johnston, & Morris, 1996). As previously stated, the vast majority of older adults over the age of 65 years suffer from at least one chronic condition, and yet 80% of them are fully able to live active and independent lives (Chappell, 2011). Interestingly, many older adults will report that chronic conditions and chronic pain do have an impact on them physically, and yet this does not necessarily lead to disability. The World Health Organization (2001) recognizes that disability involves a complex relationship between a person’s physical ability as well as personal and external factors in the environment. Thus, a person’s environment can compensate for physical changes that an older adult is experiencing in order to protect them from disability. The current system of care for older adults suffering from chronic illness is far from adequate. Presently, care for older adults relies heavily on informal caregivers, typically including family members, most often women, and less frequently, friends. When the level of care exceeds what can be maintained by these family informal caregivers, care turns to institutions such as assisted living homes. These two current systems are costly to society, but they are especially costly to families from both a financial and personal perspective. From a financial perspective, being a caregiver may limit a person’s ability to work, take care of others in their family (i.e., children), and there may also be significant costs associated with caregiving (i.e., having to buy specialized equipment). In addition, informal caregivers rarely receive support from their communities. The most frequent support provided is respite care, which involves a few hours of care provided by an agency so that informal caregivers can leave the house, typically for groceries or other errands. Caregiving burden is an adverse situation that family members may experience when caring for a loved one. It is defined as the subjective experience of distress that

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an individual faces due to the ongoing needs to care for a relative (Feldman, 1996). It is associated with psychological symptoms such as loneliness, low life satisfaction, and depression (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991). Sadly, caregiving burden can lead to unnecessary institutionalization of the family member receiving care. Financially speaking, care provided by institutions can be devastating because such services are extremely costly and minimally subsidized. In addition, family members often have feelings of grief and guilt when having to resort to care provided by institutions. Thus, the status quo of care currently available to older adults suffering from chronic conditions is grossly inadequate. Madeleine (70 years old) and Francis (75 years old) had been married for 45 years and, for those years, lived in their home where they had raised their three children. One of their children was completing her graduate studies in a city 3 hours away, whereas the other two boys were gainfully employed (one in another country and the other across the country). Though they didn’t see their children as often as they would like, they considered that they had a very strong family bond, since they spoke regularly with their children. When Madeleine was diagnosed with Vascular Dementia 4 years ago, the family came together and made sure to hear Madeleine’s wishes for her care and well-being. Madeleine expressed that she wanted to live at home for as long as possible, but also expressed her wish to not be a burden on her family. Initially, Madeleine seemed to do well at home and was even able to maintain the majority of her social engagements (e.g., church choir, bridge league, and so on). However, approximately one year ago, Madeleine suffered a devastating stroke that was followed by a significant decline in her memory and thinking abilities, physical abilities (e.g., she could no longer climb the stairs in their home unassisted), and her activities of daily living (e.g., she was no longer able to independently bathe herself). Her driver’s license was revoked due to medical reasons and she could no longer participate in her community activities. Francis was determined to keep Madeleine at home, and for 6 months, he dedicated himself to taking care of all of her needs. Cargiving, at times, required him to lift her up the stairs or into the bath. Their children started to notice a change in Francis: He was more irritable, had stopped participating in most of his own activities, and no longer saw any of his friends. Following an exhaustive search, their children were disheartened and surprised to find that there were very few services available to help Francis with caregiving for Madeleine. The family took the collective decision to move Madeleine to an assisted living facility. They found a facility that was about 20 minutes away from the family home. It seemed lovely and appropriate to meet Madeleine’s needs, but it came with a price tag of 3500$/month. Currently, although Madeleine seems content in her new environment, Francis has not come to terms with this

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choice. He still suffers from the residual effects of caregiver stress, and is often plagued with thoughts of guilt and shame. This is not how he envisioned growing old with his love, Madeleine.

Despite that there often appears to be only two choices for cargiving, long-term care and the sole use of family informal caregivers are not the only options for care provision to older adults with chronic illness. Aging in place has become more popular in the last few decades as a for older adult care in Canada. It is defined as “remaining living in the community, with some level of independence, rather than in residential care” (Davey, Nana, de Joux, & Arcus, 2004, p. 133). Aging at home is a preferred option for older adults and for their families because it allows the older adult receiving care to maintain independence, autonomy, meaning and connection to social support (Callahan, 1993; Frank, 2002; Keeling, 1999; Lawler, 2001). These aspects of well-being are incredibly important when considering a person’s care, since social support is inversely correlated with mortality and mental health conditions, such as depression (Holt-Lunstad, Smith, & Lawton, 2010; Ozbay, Johnson, Dimoulas, Morgan, Charney, & Southwick, 2007). Chappell (2011) reported that 85% of surveyed older Canadians wanted to remain at home for as long as possible. Relocation to a facility is often accompanied by losing social connections, changes in routines, rituals and lifestyle, leaving behind personal belongings and an overall loss of independence. In fact, a study found that 26% of older adults particularly feared the loss of independence when thinking about moving to institutional care (Iecovich, 2014). Relocation to institutional care can lead to emotional distress, mental health issues such as depression and anxiety, loneliness, adjustment difficulties, functional decline, and overall decreased well-being (Iecovich, 2014). A study by Wiles, Leibing, Guberman, Reeve, and Allen (2011) captured how older adults viewed aging in place, and they described it as being able to have their preference met in their living arrangements, having access to local services and amenities, maintaining their social networks, and having a sense of safety, security, independence and autonomy. Thus, not only do older adults and their families favour aging in place with the appropriate health care support system in place, but such an arrangement also favours positive health outcomes for the older adult receiving care. The vast majority of older adults would prefer to age at home and this option is also popular with governments due to its cost-effectiveness. In fact, a public policy on aging in place has been discussed in

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Canada for the last 20 years. The National Forum on Health Report (1997), chaired by former Prime Minister Jean Chrétien, stated that the aging in place policy was a necessary service and they recommended that it be publicly funded—something which was never actualized. Hollander (2001) studied the impact of homecare service cuts in British Columbia in the 1990s; his team found that, following the cuts, there were significantly more admissions to assisted living homes, an increase in hospital beds used, and overall healthcare costs increased in the province. Other studies have compared the healthcare costs of homecare services to assisted living care and found that homecare was 40 to 75% less expensive overall (Hollander & Chappell, 2002; Chappell, Havens, Hollander, Miller, & McWilliam, 2004). Policy makers seem to be wellaware of the significant cost savings of homecare compared to institutionalized care. The Auditor General of Ontario (2015) recently reported that the average cost of an older adult residing in a hospital is 450$ per day and long-term care is 135$ per day. In contrast, homecare services cost an average of 45$ per day. With the current population aging, and the exorbitant costs of caring for older adults in hospitals and long-term care, there is a need for healthcare reform towards an aging at home policy. From a cost effectiveness perspective, aging in place is the most economical solution to the current aging trends in Canada. However, aging in place does require certain criteria in order to be implemented effectively, which include physically adapting the home environment, resources, social support, and age-friendly communities. The home of an older adult should be evaluated by an occupational therapist in order to identify how the home needs to be modified to accommodate for the older adult’s increasing level of disability. Specifically, an occupational therapist will be able to identify environmental barriers for continued mobility in the home, as well as barriers that make it difficult to perform activities of daily living. The occupational therapist can make recommendations on how to remove those barriers and the type of accommodations or home enhancements that can be made. These changes often do require a financial investment on the part of the older adult and their family (Iecovich, 2014). There are, however, current funding programs that are geared towards doing these types of renovations. For example, in Ontario, there is a Healthy Homes Renovation Tax Credit and the Ontario Renovates program which both can be used to fund these accommodations. Unfortunately, many older adults are not aware of the types of funding that they can receive, and these funding

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programs often go unused. In order to successfully implement an aging in place policy, there would have to be an increase in public awareness of funding and, potential increases in government funding, for these types of home adaptations. The community itself in which one is residing is also important for successful implementation of aging at home practices. Liveable communities are those that are pedestrian-friendly, have accessible public transportation options, and include mixed zoning (i.e., residential and commercial). Liveable communities are designed to meet the needs of all their residents regardless of age (Bookman, 2008). While liveable communities are certainly important to aging in place, age friendly cities are ideal. Age friendly cities are accessible and inclusive environments where older adults can age successfully, live in security, and continue to actively participate in society (Plouffe & Kalache, 2010). The World Health Organization (WHO) explains that age friendly cities include specific planning in eight domains including: Outdoor spaces and buildings, transportation, social participation, social respect and inclusion, civic participation and employment, communication and information, community support and health services, and housing (Plouffe & Kalache, 2010). Therefore, for example, an age friendly city might include sidewalks throughout the city (with slanted curbs for those using mobility aids), benches, elevators in public buildings, public transportation that is accessible and affordable, community organizations with a focus on the social engagement of older adults, a non-tolerant attitude towards ageism, affordable and accessible housing in urban areas close to services, and so on. Age friendly cities have been found to be beneficial to the health and wellbeing of older adults. For example, in a study by Menec and Nowicki (2014) where they asked respondents to complete a survey that examined age friendliness of a city, they found that older adults who lived in cities with higher self-reported age friendliness had higher life satisfaction and better self-reported health. Working towards age friendly cities reduces the barriers in being able to implement successful aging in place. Aging at home requires community care. Community care includes a very important role for informal caregivers. These individuals often live with, or very close to, the older adult and provide a large amount of support and care that allows that older adult to remain living at home. These informal caregivers are often responsible for coordinating outside care such as formal caregiving services, doctor’s appointments, and managing benefits. Increasingly, informal caregivers’ tasks include, at times,

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fairly complex medical and nursing tasks, which used to be provided only by hospitals. For example, Reinshard and colleagues (2012) found that nearly half of informal caregivers had managed medications, helped with assisted devices, attended to wounds, and operated special medical equipment. Through informal and formal care, the older adults’ home becomes more of a public place over time, rather than a private home the way it is typically conceptualized. However, to meet the growing needs of the older adult at home, there is a need for formal caregivers who are either privately hired by the family or through public funding. In Ontario, for example, publicly funded home services are provided through Community Care Access Centres (CCAC). Unfortunately, the CCAC system is over-stretched since the number of patients served has doubled over the last 10 years. This increase has resulted in major reductions in the number of hours of care that is accorded to each patient (Grant & Church, 2015). In order to have a successful aging in place movement, there will need to be increased public funds for formal caregivers, as the current system is inadequate in most communities. Aging in place is certainly the preferred policy, since it is cost effective and it is the preferred way to age for older adults and their families. In order to understand the desire to age at home, one must also understand what a home is. A home is not just simply described in terms of the physical dimension, that is, what can be processed through the five senses in the home and neighbourhood. It also includes a social dimension, including social networks and connections, as well as how one communicates with those around him or her. Home includes an emotional and psychological dimension related to a person’s sense of belonging and attachment to the house and neighbourhood. Finally, a home also includes a cultural dimension, which can be seen as a person’s values, beliefs, ethnicity, and symbolic meanings (Ieocovich, 2014). For an older adult, the home is not simply a physical space, but it allows that person to preserve meaning, social connection, and identity even when they as individuals are physically deteriorating. Thus, the home is simply an extension of the self. Joy, 73 years old, lived in a four-bedroom house where she had lived with her late husband, Bruce, for 41 years and had raised her two children. Five years ago, she had hip replacement surgery after a bad fall on an icy day. After the surgery, despite rehabilitation, her hips were never quite the same. In the last two years, she had developed mild arthritis in the joint. Her beloved husband Bruce died suddenly this year of a heart attack, which was devastating for her and her children. Following his death, her two children were insistent that Joy sell the family home and

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that she move in with one of them. Her daughter emphasized that there was no reason for Joy to live in a large four-bedroom house alone. Joy could not imagine selling the family home. The thought of starting over in a new neighbourhood made her feel physically ill. She had friends nearby and she had attended her local church for decades. The thought of losing her home, where each sight reminded her of her life, was devistating. Each nick in the wall had a story that she could recall with a smile. The memory of bringing her children home from the hospital when they were born and the day Bruce collapsed in the kitchen came flooding back. There were good and bad memories in this home, but this home was hers, and it was a part of her. In that moment, she could not imagine ever selling her home.

As older adults age, they seem to become more attached to their home, while at the same time they are more vulnerable within their social and physical environment (Lawton, 1977; Lawton & Nahemow, 1973). This increased attachment to their home has been conceptualized by theory. Specifically, Rowles (1978, 1983) developed a theory called Insideness, which includes three dimensions: Physical insideness, social insideness and autobiographical insideness. Physical insideness refers to how a person develops a routine or natural rhythm after having spent a long period of time in their home, thus creating a sense of mastery or control over one’s environment. Social insideness refers to the social networks and communities that are developed over time in one’s environment. Older adults can feel strong ties to their family members, friends, neighbours, religious congregations, and even points of service, such as their community health clinic. In fact, Gilleard and colleagues (2007) conducted a longitudinal study and found that, as people aged and their mobility decreased, older adults felt increasingly more attached to their community and had a strong sense of belonging. Finally, autobiographical insideness refers to the attachment one feels for their home because of the memories they have that shape their identity. Through this theory, one can see that an older adult who has strong ties to the place where they are living will also have a general feeling of environmental control and mastery, feel more secure and have a positive sense of self. A home for an older adult is not merely just a place, but it is a source of meaning. A home is connected to a person’s core, to their spiritual being, and its definition is constantly evolving as the person has new experiences in and around the home. A home involves constantly integrating new information and renegotiating its complex meaning. Given

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this, aging at home holds great meaning for older adults. More specifically, a qualitative study was conducted where older adults were asked about aging in place. These older adults had little to no knowledge of the aging at home policy, but nonetheless they were quite passionate about the choice to age at home. Older adults identified several advantages to aging in place, including a sense of attachment and connection, security and familiarity, and a home related to their sense of identity through ongoing independence and autonomy. In addition, older adults discussed the importance of social connections in the community around their home and the closeness to family and friends. For example, they brought up sense of belonging to a community and being greeted by numerous people as they walked down their street. They also discussed the importance of familiarity in a community and being able to know what were the best shops for their needs and wants (Wills et al., 2011). In meaning-centred theories, meaning is derived from experiencing connection to someone or something (Frankl, 1986). A home provides this pathway to meaning: A connection to social ties and to memories. A home provides meaningful aging. For family members, aging in place provides a sense of relief in knowing that their family member is being cared for in the comfort of their own home. Family members have a desire to keep their loved one in their home for as long as possible, and the decision to institutionalize an older adult family member is described as extremely difficult and heartbreaking by many. In order to successfully implement aging at home, however, several changes will need to occur from a policy perspective. Specifically, policies will have to support cities that foster successful aging at home and community connection for older persons, plentiful homecare services to support informal caregivers, and further resources to adapt homes. Although such policies require financial and planning support, aging at home will likely foster better physical and mental health outcomes for older person and be less costly over the longer term than the current system of care. Aging at home will also lead to a greater sense of meaning for older persons and less distress for family members. From a Logotherapy perspective, a sense of meaning promotes mental health, positive well-being, and a sense of a life well-lived (Frankl, 1986; Wong, 1998). Meaning is the hidden dimension of successful aging, adding years to one’s life and life to one’s years (Wong, 1998). Therefore, when conceptualizing successful aging, one must never forget the importance and meaning of the aging person’s home.

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Figure 1. Age pyramids (in number) of the Canadian population, 2009, 2036, and 2061 (Statistics Canada, 2015) Table 1. Percentage of persons aged 65 years or over observed (2009) and projected (2036) according to six scenarios, Canada, provinces and territories (Statistics Canada, 2015) Scenario (2036) Medium- Medium- Medium- MediumLowHigh2009 growth growth growth growth growth growth scenario scenario scenario scenario scenario scenario (M1) (M2) (M3) (M4) Percent Canada 13.9 24.6 23.7 23.7 23.7 23.7 22.8 Newfoundland and Labrador 14.8 31.4 31.1 31.6 30.6 32.1 30.6 Prince Edward Island 15.3 28.2 27.3 29.6 27.3 27.4 26.5 Nova Scotia 15.8 29.1 28.6 30.0 28.5 29.8 28.0 New Brunswick 15.5 29.9 29.4 30.7 29.1 30.7 28.8 Quebec 14.9 26.0 25.1 25.8 25.1 25.3 24.2 Ontario 13.7 24.1 23.1 23.5 23.4 23.2 22.2 Manitoba 13.8 22.5 21.4 21.4 22.0 21.5 20.4 Saskatchewan 14.7 24.0 23.3 22.0 24.5 23.9 22.5 Alberta 10.4 21.8 21.0 19.1 21.6 19.6 20.2 British Columbia 14.7 24.8 23.8 23.6 22.3 24.5 22.8 Yukon 8.0 20.6 19.9 22.8 16.5 24.9 19.2 Northwest Territories 5.2 20.9 20.1 18.3 19.9 18.7 19.4 Nunavut 3.0 11.4 10.7 8.9 10.2 11.1 10.1

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Figure 2. Proportion of the 80 years or over among the 65 years or over observed (1981 to 2009) and projected (2010 to 2061) according to three scenarios, Canada (Statistics Canada, 2015) Table 2. Prevalence of chronic conditions, by age group, household population aged 30 or older, Canada, 2003 (Statistics Canada, 2003). Age Arthritis / rheumatism Cataracts / glaucoma Back problems Heart disaese Diabetes Thyroid condition Urinary incontinence Asthma Bronchitis / emphysema / chronic obstructive pulmonary disease Cancer

65+ 47.3* 24.7* 24.1* 19.8* 13.5* 12.9* 10.7* 7.6

30-64 16.6 2.4 22.7 3.5 4.4 5.9 2.3 7.3

7.4*

3.1

5.5*

1.4

Source: Canadian Community Health Survey (Statistics Canada 2003). Note: Based on self-reports from a checklist of diagnosed conditions. * Significantly higher than estimate for other age group (p. < .05)

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Reflection Questions 1) How can a city better support informal caregivers? 2) What sorts of things make aging in the home meaningful? What is meaningful about your home? Glossary Informal Caregivers. Are those who provide regular help and support to family members or friends who are unable to fully care for themselves. Examples of care can include medication management, acting as a liaison to outside services and medical appointments, wound care, socialization, making meals, and so on. Caregiving Burden. Is the subjective stress felt by a person providing care for another person in need. Caregiving burden is typically related to one of the following: 1) providing care for another person takes a lot of energy; 2) there is a desire for the care receiver to recover over time which is not always possible; 3) there is little time for one’s own personal interests; 4) feelings of grief over the deteriorating condition of the person that is being cared for. Caregiver burden is related to negative outcomes and include a person’s increased risk of mental health conditions, increased risk of chronic conditions and even a higher risk of mortality. Activities of Daily Living. Include basic activities of daily living (BADL) and instrumental activities of daily living (IADL). BADLs include self-care tasks like bathing, dressing, feeding, grooming and hygiene. IADLs are not necessary for survival but are necessary for independent living. They include chores around the house, meal preparation, managing money, driving or using public transportation, shopping, using a telephone, and so on. Aging in Place. A policy that allows an older adult to remain at home throughout the aging process regardless of age, income and ability level. Liveable Communities. Is a community that is safe and secure, has affordable and good housing, appropriate transportation options, and offers good community supports to all of its inhabitants. Age friendly Cities. These cities have policies, services, structures and settings that allow older adults to age actively. They do this by recognizing that older adults have a wide range of capabilities and

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resources, being able to meet the age-related needs of its population, respecting older adults’ decisions and lifestyle choices, protecting those who are vulnerable, and promoting their inclusion.

References Bookman, A. (2008). Innovative Models of Aging in Place: Transforming our Communities for an Aging Population. Community Work & Family, 11, 422. Callahan, J.J. (Ed.), (1993). Aging in place. Amityville, NY: Baywood. Chappell, N.L., Havens, B., Hollander, M.J., Miller, J., & McWilliam, C. (2004). Comparative Costs of Home Care and Residential Care. Gerontologist, 44, 389-400. Chappell, N. (2011). Population Aging and the Evolving Care Needs of Older Canadians: An Overview of the Policy Challenges. IRPP Study, 21, 1-36. Cutchin, M.P. (2004). Using Deweyan philosophy to rename and reframe adaptation-to environment. American Journal of Occupational Therapy, 58, 303-312. Canadian Institute for Health Information (CIHI). 2003. “Rate of Hospitalizations Continues to Decline but Average Length of Stay Is Increasing Slightly.” Media release November 19. Ottawa: CIHI. Canadian Study of Health and Aging Working Group. (1994). The Canadian Study of Health and Aging: Study Methods and Prevalence of Dementia. Canadian Medical Association Journal, 150, 899-913. Davey, J., Nana, G., de Joux, V., & Arcus, M. (2004). Accommodation options for older people in Aotearoa/New Zealand. Wellington, New Zealand: NZ Institute for Research on Ageing/Business & Economic Research Ltd, for Centre for Housing Research Aotearoa/New Zealand. Feldman, R.S. (1996). The psychology of adversity. Amherst, MA: University of Massachusetts Press. Frank, J.B. (2002). The paradox of aging in place in assisted living. London: Bergin & Garvey. Gilleard, C., Hyde, M., & Higgs, P. (2007). The impact of age, place, aging in place and attachment to place on the well being of the over 50s in England. Research on Aging, 29, 590-605. Grant, K., & Church, E. (2015). “No Place Like Home? Investigating Ontario’s Home Care Shortcomings,” Globe and Mail, 10 July 2015. Hollander, M.J. (2001). Final Report on the Comparative Cost Analysis of Home Care and Residential Care Services. Report prepared for the Health Transition Fund, Health Canada. BC: Hollander Analytical. Hollander, M.J., & Chappell, N.L. (2002). Synthesis Report, Final Report of the National Evaluation of the Cost-Effectiveness of Home Care. Health Transition Fund, Health Canada. BC: Hollander Analytical. Holt-Lunstad, J., Smith, T.B., & Lawton, J.B. (2010). Social Relationships and Mortality Risk: A Meta-analysis Review. Plos Medicine, 7, 1-20.

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Iecovich, E. (2014). Aging in place: From theory to practice. Anthropological Notebooks, 20, 21-33. Keeling, S. (1999). Ageing in (a New Zealand) place: Ethnography, policy and practice. Social Policy Journal of New Zealand, 13, 95-114. Lawler, K. (2001). Aging in place: Coordinating housing and health care provision for America’s growing elderly population. Washington, DC: Joint Center for Housing Studies of Harvard University & Neighbourhood Reinvestment Corporation. Lawton, M.P. (1977). The Impact of the environment on aging and behavior. In K. Warner Schaie (Ed.), Handbook of the Psychology of Aging (pp. 276301). New York: Van Nostrand Reinhold. Lawton, M.P., Moss, M.S., Keban, M.H., Glicksman, A., & Rovine, M. (1991). A two-factor model of caregiving appraisal and psychological well-being. Journal of Gerontology: Psychological Sciences, 46, 181-189. Lawton, M.P., & Nahemow, L. (1973). Ecology and the Aging Process. In C. Eisdorfer, & M. Powell Lawton (Eds.), The psychology of adult development and aging (pp. 619-674). Washington D.C.: American Psychological Association. Menec, V.H., & Nowicki, S. (2014). Examining the relationship between communities’ “age-friendliness” and life satisfaction and self-perceived health in rural Manitoba, Canada. Rural and Remote Health, 14, 2594. National Forum on Health. 1997. Canada Health Action: Building on the Legacy. Vol. I: The Final Report of the National Forum on Health and Vol. II: Synthesis Reports and Issue Papers. Ottawa: The Forum. Office of the Auditor General of Ontario, Community Care Access Centres – Financial Operations and Service Delivery, Queen’s Printer for Ontario, 2015, p. 10 Statistics Canada, 2015. Analysis of the results of the long-term projections. http:// www.statcan.gc.ca/pub/91-520-x/2010001/part-partie3-eng.htm Statistics Canada. 2003. Canadian Community Health Survey. http://www.statcan.gc.ca/cgi-bin/imdb/p2SV.pl?Function=getSurvey&SurvId=3226&Surv Ver=0&SDDS=3226&InstaId=15282&InstaVer=2&lang=en&db=imdb&a dm=8&dis=2 Statistics Canada, 2008b. “Study: Chronic Pain in Canadian Seniors.” The Daily, February 21. http://www.statcan.gc.ca/daily-quotidien/080221/dq08 0221b-eng.htm Statistics Canada, 2010a. Perceived Mental Health. http://www.statcan.gc.ca/ pub/82-229-x/2009001/status/pmh-eng.htm Ontario Ministry of Finance, “Ontario’s Long-Term Report on the Economy,” Queen’s Printer for Ontario, 2010, Accessed from: http://www.fin.gov. on.ca/en/economy/ltr/2014/ch6.html Ozbay, F., Johnson, D., Dimoulas, E., Morgan, C.A., Charney, D., & Southwick, S. (2007). Social Support and Resilience to Stress From Neurobiology to Clinical Practice. Psychiatry, 4, 35-40. Partridge, C., Johnston, M., & Morris, L. (1996). Disability and Health: Perceptions of a Sample of Elderly People. Physiotherapy Research International 1, 17-29.

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Plouffe, L., & Kalache, A. (2010). Towards global age-friendly cities: determining urban features that promote active aging. Journal of Urban Health : Bulletin of the New York Academy of Medicine, 87(5), 733-739. doi: 10.1007/ s11524-010-9466-0 Reinhard, S.C., Levine, C., & Samis, S. (2012). Home alone: Family caregivers providing complex chronic care. Washington DC: AARP. Rowles, G. (1978). Prisoners of space? Exploring the geographical experience of older people. Boulder, CO: Westview Press. Rowles, G. (1983). Geographical dimensions of social support in rural Appalachian community. In G. Rowles, & R. Ohta (Eds.), Aging and milieu: Environmental perspectives on growing old (pp. 231-239). New York: Academic Press. Wiles, J.L., Leibing, A., Guberman, N., Reeve, J., & Allen, R.E.S. (2011). The meaning of “Aging in Place” to Older People. The Gerontologist, 52, 357-366. Wong, P.T.P. (1998). Spirituality, meaning, and successful aging. In P.T.P. Wong & P. Fry (Eds.), The human quest for meaning: A handbook of psychological research and clinical applications (pp. 359-394). Mahwah, NJ: Lawrence Erlbaum Associates, Inc., Publishers. World Health Organization (WHO). 2001. “International Classification of Functioning, Disability and Health (ICF).” http://www3.who.int/icf/ intros/ICF-Eng-Intro.pdf

Chapter 17:

Sylvia’s Gift  A Caregiver’s Journey Lakshmi Sundaram

When we are no longer able to change a situation, we are challenged to change ourselves Viktor Frankl

This chapter emerges from my direct experience being a primary caregiver for my mother who had Lewy Body Dementia. During the four years in which I cared for her, I encountered both the privilege and the pain of accompanying someone in the last stages of their life. I viewed dementia, not as a disease but rather as a natural progression of my mother’s life. There was nothing that could be done, the situation was unchangeable, and my mindfulness practice as well as connections with nature helped myself and my family view our journey with mum as an inevitable and sacred part of life. This helped us move through the often seemingly insurmountable challenges together and find meaning and growth, while honouring mum’s place in our hearts. Through the lens of my own experience, this chapter will explore current research on the topics of caregiver spiritual growth and collectivistic approaches to caring for the aging. I will also explore how my own mindfulness practice and connection with nature fostered a deep sense of meaning through the process of caregiving. Theoretical and Experiential Frame My mother Sylvia was diagnosed with dementia at a time when our family was struggling with our individual and collective sense of identity. The familial structure was challenged by the breakdown of my 23-year marriage. I was no longer a wife and partner and my young adult sons appeared disillusioned and were seeking individual life trajectories. In addition my mother, my sons, and myself, my brother generously moved into our home to help take care of mum. Our family unit quickly shifted and challenged our identities that we had been clinging to. In

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fact, it was mum’s dementia that grounded us, which linked our arms in the unity of collective suffering, and which opened us to our vulnerabilities, gluing us together. There was solace in the permanence of our relationships, in the collectivistic coming together of our vulnerable selves. At times, accompanying mum was fuelled with joy and compassion; at other times, it was set on fire with profound sadness and despair. With the help of each other we learned to ride these waves of change. Together. Theoretical Considerations As Canada’s demographic is changing, there are more aging people who will need special assistance from caregivers. However, research tends to focus on caregiver stress and burnout, which are major contemporary concerns, particularly for those caring for a parent diagnosed with dementia (Carpenter, 2001; Takahashi, et al., 2010; Thomas, et al., 2006). Despite the fact that the focus on caregiving has been primarily negative, research is beginning to emerge which examines the positive aspects of caregiving (Acton & Wright, 2000; Cheng, et al., 2013; Cheng, et al., 2015; Peacock, et al., 2010). There are few programmes available for caregivers that foster not only coping mechanisms but also offer the opportunity to cultivate resilience, compassionate connection, and personal growth through the caregiving process. What seems to be rising from current research is firstly, how collectivist approaches to caregiving fosters resilience, and secondly, how a secular spirituality founded on interdependence and interconnectedness emerges from this approach. In essence, as Frankl (1963, 1978) notes, how does our attitude towards unchangeable suffering help us encounter meaning through the process of caregiving? Finally, can our reciprocal relationship with nature help caregivers recognize the unpredictability and impermanence of life as a natural process. Collectivistic vs. individualistic cultures. Families are complex selforganizing systems that adapt to changes in structure and environments. Each family member makes a contribution to this adaptation and new familial structures may emerge (Anderson, Crabtree, Steele & McDaniel, 2005; Johnson, 1995). In order for familial growth to occur, there must be some flexibility in the system and in how the self-concept is experienced (Anderson et al., 2005; Heine, 2010; Johnson, 1995; Legault, Bourque & Roy, 2008). An individualistic view of self reveals a sense of separateness from others and when proximal causes (dementia in this case) challenge this view, it may be difficult to adjust (Heine, 2010, Legault, Bourque & Roy, 2008). By contrast, collectivistic cultures are

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systems, which are less objectified (stable) and more contextualised (flexible) than in individualistic cultures. However, culture itself is constantly changing and humans have evolved from a highly interconnected social species to one of separateness or disconnect, in which flexibility is less common (Heine, 2010, Taylor, 2007). In the case of caregiving, studies have revealed that there are cultural differences in dementia caregiver experience (Janevic & Connell, 2001; Nisbett, Peng, Choi, & Norenzayan, 2001; Roth, et al., 2001). The incremental theory of self, which is present in most Eastern, collectivistic cultures, states that one can be open to the possibility of improving oneself as the context of life changes. This comes back to the previously mentioned object and context and to a stance of seeking either stability or flexibility. The basic theory in individualistic cultures is the belief that the context or situation must change while the individual remains stable. In an incremental theory of self, adhered to by most collectivistic cultures, change occurs in the individual in order to adjust to the context. Frankl (1978) describes the unhelpful beliefs that power is defined by our ability to change a situation or another person. However, in reality, power comes from our ability to change ourselves, to change our attitude towards an unchangeable situation (Frankl, 1987). As aging is an inevitable part of life and requires adjustment to changes in self and to one’s context, it is understandable that modern individualist cultures struggle with aging and, consequently, with dementia. Thus, it may also be understandable that caregivers from a collectivistic perspective report an increased satisfaction with caregiving; culture has an impact on the manner in which caregiving is perceived. Dilworth-Anderson, Williams & Copper (1999) found that, whether a caregiver was from individualistic or collectivistic cultural roots determined whether they were generally the primary, secondary or tertiary caregivers. Those from collectivistic cultures were more likely to become primary caregivers, caring for the relative at home, whereas those from individualistic cultures were more likely to rely upon formal institutions. In a subsequent study led by Dilworth-Anderson et al. (2005), a cultural justification for caregiving scale (CJCS) was created (see Table 1) and used to assess justifications and expectations around the caregiving for a loved one. Results indicated that African Americans scored significantly higher on the CJSC and had more cultural reasons for providing care than did White Americans. Another study conducted by Willis (2012) looked at the sense of ethnic identity in relation to caregiving and found that, the stronger the ethnic identity, the more individuals gave a collectivist account of motivations for caregiving.

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Table 1. Cultural Justifications for Caregiving Scale (CJCS) I give care because: a. It is my duty to provide care to elderly dependent family members. b. It is important to set an example for the children in the family. c. I was taught by my parents to take care of elderly dependent family members. d. Of my religious and spiritual beliefs. e. By giving care to elderly dependent family members, I am giving back what has been given to me. f. It strengthens the bonds between me and them. g. I was raised to believe care should be provided in the family. h. It is what my people have always done. i. I feel as though I am being useful and making a family contribution. j. My family expects me to provide care. Note. Reprinted from Effect of Race on Cultural Justifications for Caregiving by Dilworth-Anderson, P., Brummett, B.H., Goodwin, P., Williams, S.W., Williams, R.B., & Siegler, I.C. Retrieved from Journal of Gerontology, 60B, 257-262. Copyright 2005, Journal of Gerontology.

For our family, friends and family members who supported us the most during this challenging time were those from the East Indian community. This experience evoked a sense of connection with a collectivist way of seeing eldercare. Like Aboriginal populations (Coates & Hetherington, 2006; Parrack & Joseph, 2001; Wright, 2009), aging, sickness and death were perceived as a normal and natural part of life, and accompanying the aging during this time should be honoured. Echoing the words of Frankl (1963, 1978), we cannot avoid the suffering associated with our condition; we can only make a choice to derive meaning from the inevitability of the situation. Pyke and Bengtson (1996) categorized families using an individualistic – collectivist dimension. They looked at four specific traits: Family ethics, contact, interdependence, and the meaning found through caregiving practices. Pyke and Bengtson (1996) found that families from individualistic cultural backgrounds more often rely on external, formal systems of support while collectivist families used caregiving to build family relationships. In our own experience, while taking care of mum, and without consciously knowing it, our family was using caregiving to build relationships and returning to our collectivist upbringing. Spiritual growth. Ott, Sanders and Kelber (2007) explored grief and growth in caregivers of individuals with dementia and found that 55% – 90% of caregivers experience some form of spiritual growth. This was

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particularly evident in adult children of individuals with dementia, seemingly because spouses were often aging themselves and found it more difficult to care for their loved one. To further investigate this, Cheng et al. (2015) identified ten themes in order to evaluate positive gains of primary caregivers. These themes, as seen in Figure 1. illustrate a hypothetical model of caregiver gain and it must be noted that the stages are not necessarily acquired in a linear fashion. Cheng and his team found that caregivers learned to reframe challenging situations and negative emotions by integrating those skills. Essentially by changing their attitude to an unchangeable situation (Frankl, 1978) or, as existential psychologist Rollo May (1953) would describe, by fully participating in the situation and intentionally and actively choosing to love.

Note. Reprinted from Voices of Alzheimer Caregivers on Positive Aspects of Caregiving by Cheng, S.T., Mak, E.P.M., Lau, R.W., Ng, N.S.S., Lam, L.C.W.. Retrieved from The Gerontologist, published online. Doi: 10.1093/geront/gnu118. Copyright 2015, The Gerontologist.

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How then does growth appear through this daily inundation of unfamiliar challenges? Taylor (2007) sees the rise of individualism as the first malaise of modernity. He maintains that it is impossible to find personal authenticity without being a part of something larger, a community. Perhaps, the quest could begin in a family searching for meaning through the caregiving of an individual with dementia. We need to move to a more holistic thinking style rather than an analytic thinking style (Heine, 2010), move away from the object of dementia to the context of dementia, and from avoiding conflict to accepting that there will be tension. By remaining open to the possibility that we may grow through the presenting challenges and making choices in that direction, we can experience great meaning. Both Frankl (1963, 1978) and May (1953) describe the ability to choose our attitude toward challenges as ‘freedom.’ Freedom sometimes resides in a reciprocal relationship to cosmic forces— transcending ourselves to connect with something greater. Taylor (2007) argues that the decline in religion is caused by our modern culture’s inability to reside in mystery where our selves are in reciprocal relationship to cosmic forces. We rather have a stable, objectified, predictable and controllable worldview lest we be afraid of everything. Caring for someone with dementia uproots those modern ideals. Dementia forces caregivers into the unknown where detailed hallucinations of miniature people living in cupboards or elaborate conversations with the dead become the new daily norm. Acton and Wright (2000) found that looking outside oneself is more attainable in collectivistic culture and that this can lead to selftranscendence in caregiving. Perhaps related to this are the issues of self-enhancement (competitive – being better than others) so pervasive in Western society or self-effacement (be the best we can be but not better than others) of most collectivistic cultures (Heine, 2010). In my own experience, there is not much room for self as a caregiver of an individual with dementia. Perhaps this is an impetus for self-effacement (Heine 2010) and, thus, more collectivist behaviour. Interestingly, studies have also shown that participation in an eightweek Mindfulness Based Stress Reduction (MBSR) programme led to improvements in spirituality and reduction in caregiving stress (Carmody, Reed, Kristeller & Merriam, 2008; Greeson, et al., 2011). Although founded in Buddhist, collectivistic traditions, MBSR is a nonreligious secular practice, which highlights a sense of interconnectedness, non-duality, impermanence, and that all is interdependent (Carmody et al., 2008; Greeson et al., 2011; Wada & Park, 2009). Participants in the

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MBSR programme interpreted caregiving and experienced meaningful growth similarly to caregivers from collectivistic backgrounds. Like for Frankl (1978) and May (1953), MBSR training focuses on the intention to train the mind to return to an object of attention (usually the breath) so that a choice can be made as to how to respond (rather than react) to a situation (Monteiro & Musten, 2013). It is through such a response to a challenging situation that one can find meaning and transcendence beyond oneself, connecting with the sacred. Taylor (1991, 2007) suggests that people are looking for their own paths, looking for a direct experience with the sacred. He states that we are a people hungry for meaning; meaning derived through giving and serving others, by reengaging in the collective life while caregiving, something which we have lost and are searching for. The “mode of connection will be different, but it will still be a collective connection” (Taylor, 2007, p. 492). Taylor speaks to finding these times of connection in experiences such as the festive times, which bring us together. “People seek those moments of fusion, which wrench us out of the everyday, and put us in contact with something beyond ourselves” (Taylor, 2007, p. 493). Why could this wrenching from ourselves not occur while taking care of each other, connecting with each other, serving together for a higher purpose, or in this case, honouring our mother and grandmother? Aboriginal roots. In his book A Fair Country, John Ralston Saul begins with the phrase “We are a Métis civilization” (Saul, 2008, p. 3). I resonate with these words, not because I am Métis, but because I resonate with the essence of being of mixed blood, with each foot in a different culture, one individualist and one collectivist. The question swirling in my mind for the past 50 something years is “where is my place, my home, my heritage culture?” The Aboriginal worldview is that we support each other and the environment, that we are in relationship with the environment and interconnected with all living and non-living beings (Coates & Hetherington, 2006; Hart, 2010; Parrak & Joseph, 2007). Life is dynamic and constantly changing and what is important is how we understand things and how we are in relationship with those things (Saul, 2008). Heine (2010) describes the possibility of having both an independent and interdependent view of self. An independent view of self would lead us to think that we are completely self reliant whereas an interdependent view may help us notice that nothing in nature is self reliant, all is connected and needs each other. Indigenous peoples from all over the world

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recognize the importance of interdependence. In a Report of the Royal Commission on Aboriginal Peoples it is stated that “The effect of these diverse, overlapping bonds was to create a dense network of relationships within which sharing and obligations of mutual aid ensured that an effective safety net was in place” (Canada, 1996, p. 11). This is evident from the attitude that Indigenous populations take to caregiving, “Indigenous care-giving should be viewed as a whole of life experience and seen in the context of an individual nested within their family, and their community. Caregiving includes all of the social, emotional and cultural support that enhances the well-being of the individual, family and the community where a member has a disability” (Wright, 2009, p. 204). There is much to be learned from dialogue with Indigenous peoples regarding their wisdom and knowledge to enter the “inclusive circle that expands and gradually adapts” (Saul, 2008, p.4) and opens to the growth of a holistic oneness. This is a basic principle of need, with a coming together of resources attributed to those who are most in need (Heine, 2010). Cultivating and considering this approach would also honour and speak to the increasing rates of dementia found in Aboriginal populations (Jacklin, Walker & Shawande, 2013). In doing so, we may begin to uncover and understand the layers of our existence and become more aware of our essence and how it contributes to our human identity (May, 1953). Lived Experience In my own counselling practice, at least 50% of my clients are from collectivist cultures and the common thread through their issues is one of feeling torn between cultural paradigms. While it is beyond the scope of this chapter to explore this directly, it is important to understand that many of these clients come to me because they have felt misunderstood and disregarded when it came to discussing their culturally collectivistic foundations. In relation to caregiving, I faced a similar situation. At the time of my mother’s diagnosis, I was consulting with a psychologist on issues related to the breakdown of my marriage. As with many psychotherapeutic interventions, issues relating to childhood trauma surfaced and it was suggested that taking care of my mother was not healthy for me, and that it would not foster my personal growth. On many occasions, the psychologist suggested “you should put your mother in a home.” I tried to explain the collectivistic underpinnings of my background to no avail. There appeared to be a disconnect in values that

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could not be bridged. In fact, it was this sentiment of not being understood that led me to abandon a therapeutic relationship that had supported me for over ten years. We cannot try and understand what is going on in a client’s heart without taking into account culture routines and behavioural scripts. Our bio-psycho-social-spiritual models must be conceptualized through the amalgamated lens of biology and culture, nature and nurture. Culture is not a mask that can be removed; everything is framed by and etched in cultural script. Cultural and religious practice and traditions can be explored with curiosity by inviting cultural information and knowledge into the therapeutic frame. The sense of self is shaped by the manner in which we internalize our culture (Heine, 2010) and for those of us who are considered bi-cultural, adhering to cultural norms can be quite confusing. Thus, a caregiver’s moral and philosophical stance emerges in the manner in which they do or do not find meaning and providing culturally sensitive therapy or supportive services is paramount. Background I was born in Montréal to immigrant parents, my father from South India and my mother from Northern England. As both my parents worked for the United Nations, our house was often filled with peoples from around the world. I learned to dabble in the perspectives of others while playing Chopin for Polish diplomats or sitting in full lotus with visiting yogis. Our family also travelled extensively and had the privilege of living in many parts of the world. I was schooled in Montreal, England, Barbados and home schooled when circumstances did not permit attendance at an educational institution. When I was six years old, my father (then 60) retired and became our primary caregiver as my mother returned to work. My father was an elder in the East Indian community and our family social life was largely intertwined within this community. As I moved into my teens, my social life in Canada challenged the collectivistic nature of my upbringing and I began pulling away from the Indian community and shifted to a more individualistic manner of being. Following my marriage, and as my own family grew, I moved away from Montreal and established a more independent lifestyle taking care of my immediate family and distancing myself from the collectivistic community in which I had grown up.

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Baptised a Unitarian, my religious background was another confusing matter. My father was a (somewhat) practicing Hindu and my mother was a self-proclaimed atheist. This frequently changing and culturally diverse landscape was rich and stimulating, but also sometimes confusing, and I was instinctively drawn to nature as an innate place of connection with my spirit. For the purposes of this chapter, and using myself as the case study, my presenting problem involved accommodating the divergence of my eastern and western values while dealing with the challenges of being a primary caregiver for my mother through her journey with dementia. What I have not mentioned prior to this is that, the multicultural, privileged, child portrait painted above came at a high cost. Our family home was filled with diversity and adventure and also alcoholism and abuse. My mother suffered from both bipolar and borderline personality disorders. She could be volatile and was unpredictable and both physically and mentally abusive. My father provided safety in that he was always present but he was emotionally unavailable due to his alcoholism. I mention this, not to blame my parents; they were loving and caring individuals impacted by their own history, but rather, because it directly relates to my conflict with taking care of my mother. On the one hand, the collectivistic community that I deeply respected, and whom stood by my mother following my father’s death, insisted that I take care of her myself. The other individualistic side of me was terrified of what to expect and worried about the cost to myself and to my children. At the time of her diagnosis, my mother was living with me in an apartment attached to the house and our relationship was chaotic, swaying from love to abhorrence often on a daily basis. I had built an enormous emotional wall to protect myself, but nevertheless my cultural upbringing and attachment wounds dictated that I would do everything in my power to keep my mother home for as long as possible. As mentioned above, I had been working with a psychologist for over 10 years and, after leaving her, I began consulting with a spiritual counsellor who, along with a solid mindfulness practice and my connection to nature, helped me make choices, derive meaning, and ultimately grow (and heal) through the experience of taking care of my mother. Mindfulness offered me the ability to accompany my mother through her journey with dementia, with presence and compassion, and with a rekindling of authentic love as she progressively moved through the journey towards death. Mindfulness and nature both have the capacity to open us to our internal landscape while being held in the safety of the home for our

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soul. Together they form a basis for what indigenous populations have known for centuries (Saul, 2007). Research conducted by Jacklin, Alker & Shawande (2013) reveals that many Aboriginal cultures view dementia as a natural part of aging and accept this as the circle of life, a sacred time. In studying our belief systems Legault, Bourque & Roy (2008) examine the relationship between the ways of viewing nature and our belief systems. More specifically, the relationship with nature can elucidate our worldviews and the psychological attitude that we adopt. They note that our values and beliefs affect our personal attitudes in the face of challenges. If we are connected to nature in a reciprocal relationship, such as are Indigenous populations, then we may approach dementia with an embracing of uncertainty and find ways to be in harmony with what is unfolding. From my own experience, nature and mindfulness both promote a collectivist stance to life, an interconnection, and an awareness of the process of life, which helped me find meaning and solace. What follows is a brief description of how mindfulness and nature hold this space. Mindfulness. As noted, Mindfulness Based Stress Reduction (MBSR) is an integrative eight-week programme group approach that has been empirically demonstrated to foster balance and growth in the face of challenging discomfort and emotions (Chiesa, Brambilla & Serretti, 2011; Kabat-Zinn, 1982, Monteiro & Musten, 2013). In a study conducted by Carmody, Reed, Kristeller & Merriam (2006) results showed that there was a significant increase in spirituality following participation in an eight-week Mindfulness Stress Reduction programme. In particular, mindfulness–based programmes have been found to reduce caregiver stress (Oken et al., 2009). Mindfulness meditation practices have been empirically proven to shrink the amygdala and increase the thickness of the prefrontal cortex. This offers the caregiver an enhanced ability to remain calm and respond to situation, rather than react, providing the caregiver with more options. This offers the possibility of choice and integrates what Frankl (1978) describes as the clarity to view our mission in life, that which provides us with a sense of meaning in this world. My mindfulness practice was powerful in allowing me to remain calm and make choices that allowed me to experience meaning in caregiving. Nature. As mum’s dementia progressed, our time spent in nature offered moments of peace and tranquility together. At first, we found this by walking together, listening to the geese, or searching for the reddest maples leaves, bathing in the sun, or laughing with the wind. As mum declined, I would wheel her outside and we could sit for hours

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without talking. Sometimes she would imagine a rabbit and she would describe its antics. Sometimes, mum was not present and it was I that talked about the sun and the wind. We all implicitly know that a walk in the woods helps us think, it also increases creativity and flexibility and improves mood (Sackett, 2010; Selhub & Logan, 2012; Sundaram, 2014). Aboriginal peoples know well the benefits of nature and often collaborate with nature in the healing of various mental ailments perhaps by sitting under the swaying branches of a weeping willow for depression, walking, and embodying the quadrants of the medicine wheel or reinforcing rituals and ceremony in nature to restore sacred vitality and spirituality (Young & Nadeau, 2005). The mystery in nature invites us into dialogue with what lies within us. Hegarty’s (2010) studies show that we seek nature during both minor and major transitions in our lives. Research into the relevance of using nature-based approaches demonstrates that there are physical, psychological, and spiritual benefits arising from time spent in nature (Berman, Jonides, & Kaplan, 2008; Hegarty, 2010; Nisbet, Zelenski, & Murphy 2011). Furthermore, nature and mindfulness together help to increase awareness, regulate emotions, increase spirituality and cultivate a sense of interconnectedness and interdependence. Our inherent spirituality is connected to nature and is, thus, a key resource to cope with caregiving. Conclusion I look forward to engaging in more research in this field; it would contribute to the advancement of knowledge regarding adult caregivers of aging parents with various forms of dementia, across cultures. Data may support the teachings of the Aboriginal population, in honouring their seniors and in drawing from Aboriginal knowledge and existing insights of our interdependence with the natural world. Given the enormity of current research being carried out on the physiological benefits of both nature and mindfulness, I foresee empirical research on nature-based mindfulness programmes specifically designed for caregivers, healing gardens, and sacred spaces for caregivers. As Saul (2008) offers, we must not limit ourselves to the written and academic word but the metaphysical and connected dimensions of our being must also be explored. We all walk on the remains of our ancestors each and every day. Perhaps nature and mindfulness have the power to bring us to our senses and assume our true place, as stewards of each other, as beings in service of all – returning to our collectivistic roots.

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Specifically, mindfulness opens us to a clearer vision of what is, while nature allows us to apply these discoveries to what we witness in the natural world, the impermanence of everything. A natural spirituality emerges, one of connection, interdependence, reciprocity, and non-duality. My mother, Sylvia had a very difficult childhood and felt unloved for most of her life. This led her to be an abusive parent and I learned at a very young age to protect myself from her. As much as I had been brought up with mum’s values of “never ask for help as it incurs a responsibility,” we both learned to ask for help, from each other and from others. With the advance of her dementia, and through my mindfulness in nature practice, and the support of our family, I slowly mustered the courage to drop my guard and mother my mother as I mothered my own children, with (mostly) unconditional love. Our relationship came to a point where neither of us was afraid to show our vulnerability. Our vulnerability, in fact, is what united us. I wish, I hope, that mum knew that she provided us with a sense of meaning and purpose in a time that our family may have otherwise fallen apart. What we collectively encountered while caring for her, glued us together in an interconnected, selfless unit, and helped us open to each other and to our individual challenges. Caring for mum empowered all of us to rediscover ourselves and our fundamental values—and to live in congruence with those values. We learned to accept our limitations while asking for help, to be creative when times were easy, and to be compassionate with each other and ourselves when the times were particularly tough. We all learned to find meaning from despair (Frankl, 1963, 1978). Sylvia’s gift is that she continues to offer an overflow of unexpected connections that were reinforced while we took care of her, through the sharing of our inherent, collective wisdom. When we stop and decide to climb life’s ladder of possibility rather than remaining blinkered by probability, we may notice opportunities to connect and to see beauty even in the most fragile moments of our suffering. Instead of growing older, may we choose to grow wiser, finding freedom in fact that we can make choices. We may, as Viktor Frankl offers, transform tragedy into triumph. Reflection Questions 1) In what ways could traditional or Aboriginal cultures inform psychotherapy practice with caregivers? 2) How can the experience of nature help to reduce caregiver stress or burnout?

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Glossary Incremental theory of self: States that one can be open to the possibility of improving oneself as the context of life changes. Mindfulness-Based Stress Reduction: A non-religious, secular therapy practice, which highlights a sense of interconnectedness, nonduality, impermanence, and that all is interdependent. MBSR focuses on the intention to train the mind to return to an object of attention (usually the breath) so that a choice can be made as to how to respond (rather than react) to a situation. References Acton, G.J., & Wright, K.B. (2000). Self-Transcendence and Family Caregivers of Adults with Dementia. Journal of Holistic Nursing, 18, 143-158. doi: 10.1177/089801010001800206 Anderson, R., Crabtree, B., Steele, D., & McDaniel, R. (2005). Case study research: The view from complexity science. Qualitative Health Research, 15(5), 669-685. Berman, M.G., Jonides, J., & Kaplan, S. (2008). The cognitive benefits of interacting with nature. Psychological Science, 19(12), 1207-1211. Canada (1996). Report of the Royal Commission on Aboriginal Peoples: Volume 3. Ottawa: Royal Commission on Aboriginal peoples. Canada Communication Group. Retrieved from https://qspace.library.queensu.ca/bitstream/ 1974/6874/3/RRCAP3_combined.pdf Carmody, J., Reed, G., Kristeller, J., & Merriam, P. (2008). Mindfulness, spirituality, and health-related symptoms. Journal of Psychosomatic Research, 64, 393-403. doi: 10.1016/j.jpsychores Carpenter, B.D. (2001). Attachment Bonds Between Adult Daughters and Their Older Mothers Associations with Contemporary Caregiving. Journal of Gerontology: Psychological Sciences, 56, 257-266. doi: 10.1093/geronb/ 56.5.P257 Cheng, S.T., Mak, E.P.M., Lau, R.W., Ng, N.S.S., & Lam, L.C.W. (2015). Voices of Alzheimer Caregivers on Positive Aspects of Caregiving. The Gerontologist, published online. doi: 10.1093/geront/gnu118 Cheng, S.-T., Lam, L.C.W., Kwok, T., Ng, N.S.S., & Fung, A.W.T. (2013). The social networks of Hong Kong Chinese family caregivers of Alzheimer’s disease: Correlates with positive gains and burden. The Gerontologist, 53, 998-1008. doi: 10.1093/geront/gns195 Chiesa, A., Brambilla, P., & Serretti, A. (2011). Neuro-imaging of mindfulness meditations: Implications for clinical practice. Epidemiology and Psychiatric Sciences, 20, 205-210. Coates, J., Grey, M., & Hetherington, T. (2006). An ‘Ecospiritual’ Perspective: Finally, a Place for Indigenous Approaches. British Journal of Social Work, 36, 381-399.

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Dilworth-Anderson, P., Williams, S.W., & Copper, T. (1999). Family Caregiving to Elderly African Americans: Caregiver Types and Structures. Journal of Gerontology, 54, 237-241. Dilworth-Anderson, P., Brummett, B.H., Goodwin, P., Williams, S.W., Williams, R.B., & Siegler, I.C. (2005). Effect of Race on Cultural Justifications for Caregiving. Journal of Gerontology, 60B, 257-262. Frankl, V.E. (1963). Man’s Search for Meaning. Boston: Beacon Press. Frankl, V.E. (1978). The Unheard Cry for Meaning. New York, NY: Washington Square Press. Greeson, J.M., Webber, D.M., Smoski, M.J., Brantley, J.G., Ekblad, A.G., Suarez, E.C., & Wolever, R.Q. (2011). Changes in spirituality partly explain health-related quality of life outcomes after Mindfulness-Based Stress Reduction. Journal of Behavioral Medecine, 34, 508-518. doi: 10.1007/ s10865-011-9332-x Hart, M.A. (2010). Indigenous Worldview, Knowledge, and Research: The Development of an Indigenous Research Paradigm. Journal of Indigenous Voices in Social Work, 1, 1-16. Hegarty, J.R. (2010). Out of the consulting room and into the woods: Experiences of nature connectedness and self healing. European Journal of Ecopsychology, 1, 64-84 Heine, S. (2010). Cultural Psychology (2nd ed.). New York, NY: Norton. Jacklin, K.M., Walker, J.D., & Shawande, M. (2013). The Emergence of Dementia as a Health Concern Among First Nations Populations in Alberta, Canada. Canadian Journal of Public Health, 104, 39-44. Janevic, M.R., & Connell, C.M. (2001). Racial, Ethnic, and Cultural Differences in the Dementia Caregiving Experience. The Gerontologist, 41(3), 334-347. doi: 10.1093/geront/41.3.334 Johnson, A.C. (1995). Resiliency mechanisms in culturally diverse families. Family Journal, 3(4), p316, 319p, 311bw. Kabat-Zinn, J. (1982). An outpatient program in behavioral medicine for chronic pain patients based on the practice of mindfulness meditation: Theoretical considerations and preliminary results. General Hospital Psychiatry, 4, 33-47. Legault, G., Bourque, R., & Roy, G. (2008). Une grille des valeurs et des croyances appliqueé à des difficultées d’intervention. In G. Legault & L. Rachédi (Eds.), L’intervention interculturelle (pp. 198-227). Montréal: Gaëtan Morin. 2e édition. May, R. (1953). Man’s Search for Himself. New York, NY: Delta. Monteiro, L., & Musten, F. (2013). Mindfulness Starts Here: An eight week Guide Skillful Living. Victoria: Friesan Press. Neff, K.D. (2003). Development and validation of a scale to measure self-compassion. Self and Identity, 2, 223-250. Nisbet, E.K., Zelenski, J.M., & Murphy, S.A. (2011). Happiness is in our nature: Exploring nature relatedness as a contributor to subjective wellbeing. Journal of Happiness Studies, 12, 303-322. Nisbett, R.E., Peng, K., Choi, I., & Norenzayan, A. (2001). Culture and Systems of Thought: Holistic Versus Analytic Cognition. Psychological Review, 108, 291-310. doi: 10.1037/0033-295X.108.2.291

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Oken, B.S., Fonareva, I., Haas, M., Wahbeh, H., Lane, J.B., Zajdel, D., & Amen, A. (2009). Pilot Controlled Trial of Mindfulness Mediation and Education for Dementia Caregivers. Journal of Alternative and Complementary Medicine, 16, 1031-1038. doi: 10.1089/acm.2009.0733 Ott, C.H., Sanders, S., & Kelber, S.T. (2007). Grief and Personal Growth Experience of Spouses and Adult-Child Caregivers of Individuals With Alzheimer’s Disease and Related Dementias. The Gerontologist, 47, 798-809. doi: 10.1093/geront/47.6.798 Parrack, S., & Joseph, G.M. (2007). The Informal Caregivers of Aboriginal Seniors: Perspectives and Issues. First Peoples Child & Family Review, 3, 106-113. Peacock, S., Forbes, D., Markle-Reid, M., Hawranik, P., Morgan, D., Jansen, L., & Henderson, S.R. (2010). The positive aspects of the caregiving journey with dementia: Using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology, 29, 640-659. doi: 10.1177/0733464809341471 Pyke, K.D., & Bengtson, V.L. (1996). Caring More or Less: Individualistic and Collectivistic Systems of Family Eldercare. Journal of Marriage and the Family, 58, 379-392. Roth, D.L., Haley, W.E., Owen, J.E., Clay, O.J., & Goode, K.T. (2001). Latent growth models of the longitudinal effects: A comparison of African American and White family caregivers. Psychology and Aging, 16, 427-436. doi: 10.1037/0882-7974.16.3.427 Sackett, C. (2010). Ecotherapy: A Counter to Society’s Unhealthy Trend? Journal of Creativity in Mental Health, 5, 131-141. Saul, John Ralston (2008). A Fair Country: telling truths about Canada. Toronto: Penguin Group (Canada). Selhub, E.M., & Logan, A.C. (2012). Your Brain on Nature: The Science of Nature’s Influence on Your Health, Happiness, and Vitality. Mississauga: Wiley. Sundaram, L. (2014). Let’s take it Outside: Nature as a dynamic Partner in the Therapeutic Relationship. Counselling and Spirituality, 33(1), 51-69. Takahashi, M., Iwamitsu, Y., Ando, N., Okazaki, S., Nakajima, K., Oishi, S., & Miyaoka, H. (2010). The experience of burnout among home caregivers of patients with dementia: Relations to depression and quality of life. Archives of Gerontology and Geriatrics 49, 1-5. doi: 10.1016/j.archger.2008.07.002 Taylor, C. (1991). The Malaise of Modernity. Toronto ON: Anasi. Taylor, C. (2007). A Secular Age. Cambridge MA: Harvard University Press. Thomas, P., Lalloure, F., Preux, P.M., Hazif-Thomas, C., Pariel, S., Inscale, R., Belmin, J., & Clement, J.P. (2006). Dementia patients caregivers quality of life: the PIXEL study. Int. J. Geriatry. Psychiatry 21, 50-56. Wada, K., & Park, J. (2009). Integrating Buddhist Psychology into Grief Counseling. Death Studies, 33, 657-683. doi: 10.1080/07481180903012006 Willis, R. (2012). Individualism, Collectivism and Ethnic Identity: Cultural Assumptions in Accounting for Caregiving Behaviours in Britain. Journal of Cross-Cultural Gerontology, 21, 201-216. Wright, M. (2009). Out of the Blue: Giving and receiving care: Aboriginal experiences of caregiving in the context of mental illness (unpublished PhD thesis). Perth AU: Curtin University. Young, A.E., & Nadeau, D. (2005). Decolonising the Body: Restoring Sacred Vitality. Atlantis, 29(2), 1-13.

A MEANING-CENTRED APPROACH TO THE FAMILY LIFESPAN

Chapter 18

Conclusion: Meaning from a Lifespan Family Development Perspective Laura Lynne Armstrong

The quest for meaning is uniquely human. Human history is filled with art, religion, and writings of the existential, spiritual questions: Who am I? Why am I here? What is my purpose? What is the meaning of life? Existential psychology combines these philosophical questions with the basic tenants of psychology governing thinking, feeling, and behaviour. Taking an existential framework, these meaning-based questions are thought to guide human thinking, feeling, and behaviour. From this perspective, boredom, mental illness, and suicidal ideation are viewed as reflections of “need” in the areas of meaning, purpose, and a life well-lived. Despite the apparent importance of meaning to human wellbeing, very little empirical research has been conducted in the field of existential psychology. The closest related, well-validated empirical field is Positive Psychology: The study of strengths that lead to a meaningful life. As a reaction to the medical and psychological models focused on pathology, dysfunction, and distress, Positive Psychology emerged. Positive Psychology, aimed toward optimal well-being, as well as positive emotions and traits (Seligman & Csikszentmihalyi, 2000) has been critiqued for polarizing the “positive” and “negative” aspects of humanity and treatment (Ivtzan, Lomas, Hefferon, & Worth, 2015). Positive experiences were to be sought, while negative experiences were to be avoided. For example, depression was perceived by Positive Psychology as an impediment to well-being. Thus, Positive Psychology contributed to the societal perception that innate, natural emotions like sadness were potentially unhealthy and problematic (Horwitz & Wakefield, 2012). By contrast, the maturation of Positive Psychology into Second Wave Positive Psychology or PP2.0 (Ivtzan et al., 2015; Wong, 2011) has led to an embrace of the dark side of human existence: The place of existential suffering from which meaning can emerge (Wong, 2011). The need to confront the dark side of the human condition to derive meaning takes

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PP2.0 to distressing territories such as suffering, terminal illness, and death (Wong, 2011). It also advocates practices that strive toward global ideals and values, such as integrity, kindness, and other humanistic virtues (Wong, 2011). Thus, both the dark and the light are incorporated into PP2.0. More specifically, in PP2.0, the light and the dark emotions of human experiences are viewed as two sides of the same coin (Ivtzan et al., 2015). Instead of a dichotomy championing the positive, PP2.0 proposes a dialectic, or an interplay, between the lighter and darker aspects of being (Ivtzan et al., 2015; Wong, 2011). Longer-term wellbeing may, therefore, involve the transformative power of the dark into the light; confronting despair, suffering, and meaninglessness and transforming them into purpose, meaningful connection, or hope. PP2.0 has rediscovered the rich, full spectrum of human experience (Wong, 2011). Although the angst of nihilism, pessimism, meaninglessness are key features of Existential Psychology, so too are the positive qualities of freedom, responsibility, choice, and meaning. Existentialism is inherently positive and this is underscored in PP2.0. Under even the most dire circumstances, people have the potential for self-transcendence—spiritual growth experienced as value, meaning, and purpose. Self-transcendence in turn can alleviate anxiety and defensiveness and create a more mindful, generous connection with others, fostering secure attachment (Mikulincer & Shaver, 2007). Meaning is experienced in the family through the fertile soil of secure attachment, shared valued activities, giving to or caring for one another, and modelled attitudes oriented toward responsible choice and openness to experience. In Existential Psychology, like individual problems, problems within the family are symptoms of a meaning vacuum (Frankl, 1986; Lantz, 1987)—disconnection, emptiness, and threatened or anticipated meaninglessness. Families can fill the meaning vacuum either with healthy meaning or with surrogates for meaning: Addictions or the primary pursuit of pleasure, fleeting happiness, or success (e.g., Batthyany & RussoNetzer, 2014). Surrogates for meaning mask the pain of meaninglessness temporarily, but are harmful over the longer term. In the contemporary, fast-paced, rapidly changing world, people— even within families—are becoming more disconnected from one another and are crying out for meaning (Frankl, 1986). In uncertain times, when terror, man-made, and environmental tragedies become local issues, the craving for meaning particularly intensifies (Frankl, 1986). Often, in trying times, the situational heroes are those who respond to the call for meaning, turning tragedy into a triumph.

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Imagine the nurse who returns to the hospital after his shift during a major regional fire, aiding in patient evacuation, while missing out on the opportunity to spare valued possessions from his family home. The loss of his valuables is a tragedy, while there is great meaning in sparing lives. It is out of the ashes of hardship that meaning is often most evident. During hardship, people rise from the darkness and often find meaningful connection, particularly within the family system: The teenager, disconnected from her newly re-married mother, experiences the death of her dog and reconnects with her mother through this difficulty. A new, closer, more meaningful bond between them is formed. According to PP2.0, meaning can be found in the paradox—the good within the bad, the entwined ying and yang (Wong, 2011). This resilience and rise from adversity is the hero’s journey (Ivtzan et al., 2015). Similarly, from a Durandian perspective, within a family, meaning is thought to be found in the paradox between intimacy and identity, between triumph and tragedy, and between other seemingly opposing dichotomies (Durand, 1960). The struggle in the paradox is represented by a family’s imaginary structures, such as the heroic structure (Durand, 1960). Complementing these theories, from Walsh’s (2016) spiritual perspective, family resilience involves the ability to rebound from adversity and make meaning, such that the family can become stronger or more resourceful as a result of the adversity. Within Transpersonal Psychology, is it thought that challenges often precede the “awakening,” unifying apparent paradoxes, leading to the perception of each moment of life as inherently meaningful (Kilrea, 2013). In the journey from family formation as a couple, potential parenting, and aging, there are many ways in which people can make meaning in both everyday and challenging experiences. Within a family, from an existential Logotherapy perspective, meaning can be found through couple, parental, sibling, or extended family connection, caregiving, shared play activities, coping with challenges, and in connection beyond the family (e.g., to a religious community, volunteerism, being in Nature together, helping other families cope with similar challenges). The experience of meaning under these or other circumstances is a family’s spiritual journey. Spirituality offers a resilient foundation for healthy couple, parenting, and caregiving relationships throughout the lifespan. From an existential perspective, a family’s freedom, responsibility, and commitment to engage in meaningful action and connection-building may allow families to endure and flourish—weathering, successfully navigating, making meaning of, and transcending challenge and change.

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Glossary Existential Psychology combines philosophical questions with the basic tenants of psychology governing thinking, feeling, and behaviour. Taking an existential framework, meaning-based questions are thought to guide human thinking, feeling, and behaviour. Positive Psychology: The study of strengths that lead to a meaningful life. Second Wave Positive Psychology or PP2.0: Embraces both the darker and lighter human experiences in the journey to discovering meaning. Self-transcendence: Spiritual growth or connection with something beyond oneself, experienced as value, meaning, and purpose. References Batthyany, A., & Russo-Netzer, P. (2014). Meaning in Positive and Existential Psychology. New York: Springer. Durand, G. (1960). Les Structures anthropologiques de l’imaginaire : Introduction à l’archétypologie générale. Paris: Dunod. Frankl, V. (1986). Man’s search for meaning. New York, NY: Simon & Schuster. Horwitz, A.V., & Wakefield, J.C. (2012). All we have to fear: Psychiatry’s transformation of natural anxieties into mental disorders. New York: Oxford University Press. Ivtzan, I., Lomas, T., Hefferon, K., & Worth, P. (2015). Second Wave Positive Psychology: Embracing the dark side of life. London: Routledge. Kilrea, K.A. (2013). The everyday, lived, physical, and sensory experience of spiritual enlightenment. Available from ProQuest Dissertations & Theses Global. (UMI No. 1430475147) Lantz, J. (1987). Franklian family therapy. The International Forum for Logotherapy: Journal of Search for Meaning, 10, 22-28. Mikulincer, M., & Shaver, P.R. (2007). Boosting attachment security to promote mental health, prosocial values, and inter-group tolerance. Psychological Inquiry, 18, 139-156. Seligman, M.E.P., & Csikszentmihalyi, M. (2000). Positive Psychology: An introduction. American Psychologist, 55, 5-14. doi: 10.1037/0003-066X.55.1.5 Walsh, F. (2016). Strengthening Family Resilience (3rd Edition). New York, NY: Guilford Press. Wong, P.T.P. (2011). Positive Psychology 2.0: Towards a balanced interactive model of the good life. Canadian Psychology, 52, 69-81.

Author Biographies Dr. Laura Armstrong, Ph.D., C.Psych. is an Assistant Professor, Clinical Psychologist, and researcher at Saint Paul University. She also holds a Diplomate Clinician certification in Logotherapy from the Viktor Frankl Institute of Logotherapy. She is the founder of R.E.A.L. therapy (Rational-Emotive Attachment Logotherapy) and a resiliencebased mental health promotion program for school children, called D.R.E.A.M. (Developing Resilience through Emotions, Attitudes, and Meaning). In addition to public presentations to enhance community mental health, Dr. Armstrong works clinically with children, youth, adults, couples and families. Dr. Christian R. Bellehumeur, Ph.D. (psychology, University of Ottawa), is an Associate Professor and Director of the School of conselling, psychotherapy and spirituality, Faculties of Human Sciences and Philosophy, Saint Paul University, Ottawa, ON, Canada. As a clinical psychologist and researcher, his research aims at a better understanding of the integration of psychology, spirituality and religion, as well as the study of imaginary in human development. Former associate editor of the Journal Counseling and Spirituality (published by Peeters, Belgium), he has published over 35 scientific articles and book chapters, and coedited the book: L’imaginaire durandien : Enracinements et envols en Terre d’Amérique (PUL, 2013). Rabbi Dr. Reuven P. Bulka, C.M., is Rabbi Emeritus of Congregation Machzikei Hadas in Ottawa, and founding President/CEO of Kind Canada Généreux. He is the host of Sunday Night with Rabbi Bulka on 580 CFRA and the author of more than 35 books. For the last 10 years, he has chaired Trillium Gift of Life Network, responsible for Organ and Tissue Donation and Transplantation in Ontario. He has made 345 blood/platelet donations. Laure-Marie Carignan, Ph.D. (candidate), is a registered couple and family therapist in Québec, and a registered psychotherapist in Ontario. She has worked with individuals, couples, and families for over 25 years. As a part-time professor in the School of Counselling, Psychotherapy and Spirituality at Saint Paul University, she teaches couple and family therapy intervention skills, lifespan psycho-spiritual development, and family development and spirituality. The focus of her PhD research is

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spiritual development and resilience-building in families affected by Asperger Syndrome. Dr. Karlijn Demasure, Ph.D., holds a doctorate in practical theology at the KULeuven (Belgium) (2003). She was the president of the Interdiocesan Service for Pastoral Care in Belgium (2003-2007). In 2008, she became a professor at the Faculty of Theology at Saint Paul University in Ottawa, Canada. She held the Chair Sisters-of-Our-Lady-of the-Cross in Christian Family Studies from 2008-2014 and was appointed as the dean of the Faculties of Human Sciences and Philosophy (2010-2014). From 2012 till 2014 she was the president of the “Société Internationale de théologie pratique”. She was amongst others a visiting professor at the Catholic University in Kinshasa (RDC), Lumen Vitae in Brussels, the Université Notre Dame d’Haiti, the Pastoral Institute of the Dominicans in Montreal (Canada) She is now a professor at the Gregorian University in Rome (Italy) and the Executive Director of the Center for Child Protection at the same university. Her field of research is sexual abuse, trauma, spirituality and care. Chantal Elward is an IT professional, new mom, and Harry Potter enthusiast. She has a college diploma in Theatre Production and a Bachelor of Arts with a concentration in Humanities, both of which have led her through an interesting career path. If she manages to have some spare time, she likes to read, write, and throw axes. Jenna Elward, B.Sc., holds an Honours in Biology with a minor in Chemistry. With over 25 years working with children, she is currently the training director, area manager, and coach of a multi-sport recreational program for young children. Jenna is a caring mother to two beautiful children at home, three if you count her husband. Her passions include her family, friends, great food and swing dancing (when time allows). Sr. Rejoice Hoedoafia, is an assistant Faculty Member in the Institute of Psychology, Pontifical Gregorian University (Italy). Dr. Kelly Kilrea, Ph.D. is an Assistant Professor of Human Sciences at Saint Paul University in Ottawa, Canada. Kelly teaches graduate and undergraduate students in the School of Counselling, Psychotherapy, and Spirituality. Her research focuses primarily on spiritual and secular experiences of awakening (i.e. nondual realization or enlightenment), and on the impacts of spiritual/secular awakening on identity, relating,

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emotional regulation, motivation, leadership, parenting, and human potential. In addition to her research and teaching activities, Kelly works as a transpersonally-oriented counsellor in private practice with individuals, couples, and families, and as as a mental performance consultant with elite athletes. Dr. Derrick W. Klaassen, Ph.D., R.Psych. is a Registered Psychologist in private practice and an Assistant Professor of Counselling Psychology at Trinity Western University (TWU) in Langley, BC. His academic and scholarly responsibilities include teaching graduate courses professional ethics, psychopathology, research design and grief counselling, as well as providing clinical and research supervision. In general, his clinical and research interests centre on the role of existential and spiritual issues in counselling and psychology, drawing generally from humanistic-existential psychology in particular from Existential Analysis (Logotherapy). He maintains an active research lab with undergraduate and graduate students at TWU. The foci of scholarship include grief and bereavement, existential psychotherapy, rehabilitation, and spirituality in psychology and psychotherapy. Since 2006, Derrick has been involved in existential therapy, and currently serves as the chair of the board of the Existential Analysis Society of Canada. Derrick also maintains an active clinical practice that centres on providing psychological services to persons recovering from severe physical injures and accidents. Dr. Janelle Kwee, Psy.D., R.Psych. is a Registered Psychologist actively involved in training and mentoring future psychologists and psychotherapists through faculty appointments in graduate professional programs at Wheaton College and at Trinity Western University (TWU). At TWU, she teaches graduate courses, provides clinical supervision, and maintains an active program of research. In her professional journey, she has had the privilege of working with girls and young women on the streets in Bolivia and in slum communities in Brazil. She has also liaised with primary health care providers in inner city Chicago and provided outpatient community mental health and private practice psychotherapy and assessment services in the U.S. and Canada. Stephanie Larrue, M.A., is a Ph.D. Candidate in Counselling and Spirituality at St-Paul University in Ottawa and works with individuals, couples and families, with a special interest in blended family relations. She has been a stepparent in two blended families and is furthering her research in psychotherapy for couples and families, particularly within

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stepfamilies. Stephanie Larrue also has an interest in somatic experential and transpersonal integration of the therapist within the therapeutic process, especially in therapy with families. Dr. Mihaela Launeanu, Ph.D. is a Registered Clincial Counsellor and Assistant Professor at Trinity Western University (TWU) in Langley, BC. She also holds a post-graduate diploma in in Existential-Analytical Psychotherapy from the International Society for Logotherapy and Existential Analysis, Vienna. In addition to her private practice and student training, her research interests include psychological test construction, existential issues during transitions or in forensic settings, an existential model of clinical supervision, spirituality in healtcare, and translational research methodologies. Dr. Ian Manion, Ph.D., C.Psych. is a Clinical Psychologist and scientist-practitioner who has worked with children, youth and families for over 30 years. He is an adjunct professor in the School of Psychology at the University of Ottawa and Director of Youth Mental Health Research at the Institute of Mental Health Research. He co-founder of Youth Net/ Réseau Ado, a bilingual community-based mental health promotion program with satellites across Canada as well as in Europe. Dr. Edward Marshall, M.D., Ph.D., R.P., is Faculty Member of the Viktor Frankl Institute. He completed his Medical Degree at the University of Navarra, Spain. His Doctor in Medicine and Surgery Degree (Ph.D. in Neuroscience) is from the University of La Laguna, Spain. His dissertation included the study of neuro-cognitive aspects of the human visual perception and consciousness. He completed a PostGraduate Diploma in Clinical Psychiatry with a core psychotherapy component in Psychodynamic and Cognitive-Behavioural Therapy at the University of Leeds, UK, and subsequently he specialized in Viktor E. Frankl’s Logotherapy and Existential Analysis. He is Associate Certified Coach with the International Coach Federation, Registered Psychotherapist with the College of Registered Psychotherapists of Ontario and Diplomate Clinician in Logotherapy. Dr. Maria Marshall, Ph.D., R.P., is Faculty Member of the Viktor Frankl Institute. She completed her Bachelor’s Degree in Psychology with Honours at the University of Calgary, Alberta, Canada. She obtained her Master of Education Degree in Counselling and Human Development at Hardin-Simmons University, in Abilene, Texas, U.S.A. She completed her Doctoral Degree in Counselling Psychology at the

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University of Alberta, Edmonton, Canada. Her Doctoral Dissertation was entitled “The Applications of Viktor E. Frankl’s Logotherapy in Counselling Psychology.” She studied Logotherapy and Existential Analysis with Elisabeth Lukas, PhD, one of the most know disciples of Viktor E. Frankl, MD, PhD, in Vienna, Austria. She is Registered Psychotherapist with the College of Registered Psychotherapists of Ontario and Diplomate Clinician in Logotherapy. Caitlin Sigg is a Ph.D. Candidate in Counselling and Spirituality at Saint Paul University, Ottawa, ON. She is interested in researching eating disorders and the existential implications these syndromes have on affected individuals. Ms. Sigg received her Master of Arts in Counselling and Spirituality, as well as her undergraduate degree in Theology from Saint Paul University. In addition to her research and clinical work, Ms. Sigg teaches basic counselling skills at the undergraduate level. Lakshmi Sundaram, M.A., CCC., PhD Candidate, is a bilingual counsellor, lecturer, mindfulness coach and workshop facilitator. She is also a part-time professor at Saint Paul University and has written for several peer reviewed publications. In addition to having appeared on numerous television, radio and print platforms, Lakshmi works in private practice in Ottawa and offers nature and equine facilitated wellness workshops from her farm in Gatineau Québec. Emmalyne Watt is a Ph.D. candidate at Saint Paul University completing her degree in the school of Counselling, Psychotherapy and Spirituality. Ms. Watt has conducted research in the field of child and youth mental health for the past 6 years and prior to commencing her doctoral studies completed her Masters in Educational Psychology at McGill University. Dr. Paul T. P. Wong, Ph.D., C.Psych., is Professor Emeritus of Trent University and Adjunct Professor at Saybrook University. He is a Fellow of APA and CPA and President of the International Network on Personal Meaning (www.meaning.ca) and the Meaning-Centered Counselling Institute Inc. Editor of the International Journal of Existential Psychology and Psychotherapy, he has also edited two influential volumes on The Human Quest for Meaning. The originator of Meaning Therapy and International Meaning Conferences, he is the recent recipient of the Carl Rogers Award (from Div. 32 of the APA) and a member of the research group on Virtue, Happiness, and the Meaning of Life, funded by the John Templeton Foundation.

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Dr. Lilian C. J. Wong, B.Sc., M.A., Ph.D., was Associate Professor and School Counselling Coordinator at Trinity Western University and Associate Professor at Tyndale University College. She served as a Psycho-Educational Consultant, School Psychologist, and Area Counsellor for several school boards in Ontario and British Columbia for over 25 years. She co-edited the Handbook of Multicultural Perspectives on Stress and Coping in addition to other titles on positive psychology, meaning, and addiction recovery. As the Vice President of the MeaningCentered Counselling Institute Inc., she has been actively involved in the Supervision and Training Section (of Div. 17 of the APA) as well as other psychotherapy related associations. Dr. Stephanie Yamin, Ph.D., C.Psych., has a Doctorate in Clinical Psychology and is an Assistant Professor in the School of Counselling and Psychotherapy at Saint-Paul University in Ottawa. She is also a program evaluation consultant and has worked on various projects but her main research interests include evaluating interventions focused on vulnerable populations, such as older adults with dementia. She is affiliated with the Bruyere Research Institute and is a Principal Investigator on a large multi-site study on neurodegenerative diseases associated with older age.