A review of Special Needs Parenting: From Coping to Thriving, by Lorna Bradley (Huff Publishing Associates, 2015), $14.96.
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Reviewer Christine Guth is Program Director for Anabaptist Disabilities Network. She has been a support group leader for more than 13 years.
Isolation is one of the difficult and frequent byproducts when parents are raising a child with disabilities in our society. This book offers a user friendly way to build relationships between parents with common experiences and reduce isolation. As a parent of children with disabilities and a leader of support groups related to disability for 13 years, I am impressed with the relevance of the topics this book chooses to address and the helpful structure it offers for fostering community. The book is long enough to cover crucial issues but short enough to fit into busy lives.
The book’s first chapter, “God and Special Needs,” uses warm and accessible language to consider theological questions that commonly arise for Christian parents who have a child with a disability. What is God’s relationship to this disability? Who or what is to blame? Bradley cautions readers to be wary of assertions that create “a face of the character of God that is not in keeping with biblical witness.”
Chapter 2, about grief, is spot on. Grief is unquestionably part of the experience of parents of children with disabilities, and we must face and deal with our grief about the loss of our dreams if we are to accept and love the child God has given us and not saddle our child with the burden of impossible expectations. Bradley deals openly with the honest reality that grief keeps coming back, cycling repeatedly as our child meets or does not meet new developmental milestones, even into adulthood.
Bradley helps us to recognize that important people in our lives will be in different stages in the journey of grief. Naming the reality that denial for some never ends gives us a tool for recognizing and eventually finding a way to live with denial in loved ones that we find endlessly frustrating. The invitation and opportunity to know we are not alone with the grief of living with our child’s disability is one of the greatest assets of the book.
I would argue with Bradley’s description: “children [with disabilities] are trapped inside a body that does not work as intended” (p. 18). To describe our children’s bodies as not living up to intended functioning imposes what Amos Yong calls “normate bias,” setting up “normal” as a universal and preferred standard that, in reality, few people meet. I would suggest that our grief is, more importantly, about our shattered expectations.
Chapter 3, “Breaking Free from Guilt,” is likely to touch many parents deeply in an area of need. Bradley perceptively describes the way guilt comes back again and again to erode parents’ confidence. More importantly, she offers a way through the guilt, with concrete steps we can take to find our way toward self-forgiveness, and accepting the freedom and forgiveness that God offers.
Chapters 4 and 5, on patience and self-care respectively, are strongest for their suggestions of concrete steps readers can take to cultivate the attitudes and practices we need to navigate our family life with grace.
Chapter 6 looks at building healthy relationships, another important topic for parental well-being. Especially helpful is her list of suggestions for helping a child build relationships.
I found myself noting gaps that Chapter 6 might have addressed. Bradley repeats a common assertion that the divorce rate is extremely high in families with children with disabilities and seems unaware of research that does not support this claim.
Bradley might have included a recommendation to seek out counseling when important relationships are under stress. She does not mention the possibility that other family members, including the parents themselves, may be living with a disability, thus adding to the complexity of family relationships. (Depression is especially common in mothers of children with certain disabilities, autism for example, and a number of disabling conditions have strong genetic components.) Noting appropriately that some “toxic” relationships may need to be terminated, Bradley does not recognize the possibility that a toxic relationship may develop with our own child, especially as they become teens or adults. I found myself wishing she had devoted more than a brief paragraph to maintaining healthy boundaries.
Chapter 7, “Hope and healing,” is excellent in its recognition of the tension between hope and acceptance – the fine line all parents walk – but which is made more difficult when a child has a disability.
While reading this book I had to lay aside my personal biases against the term special needs, which Bradley uses in the book title and throughout. To her credit, she acknowledges disagreement in the disability population about preferred language. The term special needs to describe persons with disabilities seems to some, including myself, to be a euphemism, a way to sugarcoat the reality of impairment, segregation, and discrimination that individuals with disabilities live with, while emphasizing their other-ness and excessive needs. Relying on euphemisms is counterproductive, I believe, because ultimately they reinforce the stigma attached to living with disability.
Although written with parents in mind, this book will be helpful to pastors who have limited training or experience with disability, providing them with understanding to improve their pastoral care to the families affected by disabilities in their congregations whom they will inevitably encounter. Pastors might want to keep a copy of the book on hand, ready to give to parents when a child is newly identified with a disabling condition.
Where congregations include several families of children with disabilities, the book could be a focus for bringing families together for mutual support. Special Needs Parenting provides enough background information about living with disabilities to equip a group leader with limited personal experience in parenting a child with disabilities.
Alternately, the structure outline in the book should be enough to inspire confidence in someone with ample life experience with disability who is hesitant to take on group leadership. The book includes prayers, scriptures, and discussion questions for each chapter, as well as an appendix offering guidance for group leaders. Should your church not have enough parents in similar enough life stages to fill out a group, what a valued outreach ministry it could be to open a group to families in the wider community using the materials in this book.
Many books have been written for parents of children with disabilities. This one is unique in providing a format designed to encourage group discussion and support in a Christian faith setting. The book was informed by a wide variety of parent experiences and tested in numerous group settings. It does an excellent job of covering important themes that parents of children with disabilities commonly struggle with. I especially commend its chapters on God, grief, and guilt. It speaks to readers from a wide variety of Christian traditions without imposing sectarian biases.
Although written with group use in mind, the book will also stand on its own to empower parents, stimulate reflection on important themes, and assure parents they are not alone in their struggles. Special Needs Parenting more than lives up to its promise of offering “healing of deeply held emotional and spiritual wounds” and “insights into a loving God and practical tools for the journey ahead” (pp. ix-x).
The Rev. Lorna Bradley is an ordained deacon in the United Methodist Church and mother of an adult son with Asperger's. She serves as a Fellow at the Hope and Healing Institute, developing tools to provide emotional and spiritual support for families raising children with special needs. Read her Special Needs Parenting blog.