Extreme Caregiving: The Moral Work of Raising Children with Special Needs

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Laurie says:

Extreme Caregiving (Oxford University Press, 2018) is brilliant, lucid, and visionary. Lisa Freitag (M.D.) resets perspectives on the realities of the experiences of parents/caregivers of “medically complex” children. It is both comprehensive and well written, dealing with a complicated subject with clarity and compassion. She deals with a wide range of issues over many kinds of special needs: the medical, behavioral, social, financial, family, institutional, political issues, and the interactions among those factors. I know Lisa, and have heard her speak about this book in process; I’ve read pieces of it. The final book still amazed me.

In the preface, she cites Emily Perl Kingsley’s famous essay, “Welcome to Holland,” in which a parent’s expectations are likened to a trip to Italy, and the birth of a special needs child is instead arriving in Holland. Not what was expected, but a nice country with its own challenges and rewards. Lisa ends the preface: Holland fails for me because it brushes aside many significant difficulties, perhaps making it easier for us to ignore hardships the parents might endure. That place which is not Holland is neither composed of unmitigated loss and hardship nor entirely full of windmills and tulips. It is neither completely dire nor completely wonderful. The gifts that exist in this place are often hard to recognize and sometimes come at great cost. This is a world, as we will come to see, wherein unbearable sorrow and heady joy exist side by side, embodied in the same child. (p xix)

She discusses at length the expectation that parents must be relentlessly positive, leaving no room for any expression of grief and pain. Be saints or be stigmatized as bad parents. It is not just the children who need community and institutional help (and will still need those things when they age to adulthood), but the parents/caregivers. Saints don’t need help – but people do.

Dr. Lisa Freitag is a pediatrician who has worked among these families. Her knowledge of the complex interactions among medical and treatment professionals, social workers, and caregivers and their children is extensive and profound. The book contains many stories of the actual experiences of parents and families, including her own family’s with her developmentally disabled brother, now in his 40s. Throughout, she is unsentimental, practical, compassionate and humane.

Medical science is responsible for an explosion in the number of “medically complex” children, many of whom would have died at birth even 20 years ago. Lisa feels that the medical community has support responsibilities beyond sheer medical expertise. While the legal responsibilities lie on the parents, the millions of special needs children impact us all.

Extreme Caregiving is a remarkable and important book. This review doesn’t remotely attempt to cover the vital topics she discusses. The book needs to be widely read.

We need to recognize that families dealing with extreme caregiving are all around us, are us, and we need to help ourselves and our children live loved lives.

This is the lesson in humility and grace that parents learn by becoming extreme caregivers. During those sleepless nights, listening sometimes with desperate attention to determine their child’s needs, they learn to understand and forgive weakness. They learn to live with dependency and vulnerability, in their child and in themselves. And they learn something about being human, making it up as they go along. (p 231)

Lisa has posted occasionally and powerfully at Body Impolitic. Here is a link to her post The Will of the Body, Part 1 – Pain

(Amazon is currently selling the trade paperback for $19.01, discounted from $35)