Extreme Caregiving

The Moral Work of Raising Children with Special Needs

Lisa Freitag

One of the first books where multiple aspects of the lives of families of children with special needs are considered together
Analyzes all types of care, from home health care for the aged to analysis of institutional medical systems
Considers the entire spectrum of children's special needs together with the life-altering consequences of the caregiving required
Coins the term "extreme caregiving" to highlight both the difficulty and the unusual nature of raising kids with special needs
Contains narratives that continue beyond childhood and into adulthood

Extreme Caregiving

The Moral Work of Raising Children with Special Needs

Lisa Freitag

Description

Parents who care for children with special needs, particularly those whose children have multiple disabilities or intellectual delays, are pioneers in home health care and caregiving, yet their experience and expertise are rarely recognized. This book collects parent narratives, personal experience, and academic research to portray the lives of parent caregivers, looking at both the trials and the triumphs inherent in raising a child with special needs.

Parents raising children with special needs often must devote all of their resources, both tangible and spiritual, to providing care long into their offspringâs lives. Their experience exceeds the usual parameters of parenting. This book examines all of the facets of their parenting role, from the care they provide to the challenges they face, and questions many assumptions. It presents parents as neither emotional wrecks nor overburdened saints, but as moral individuals struggling to find their own way through relatively unexplored territory.

This book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a virtue ethic framework, it isolates the various tasks involved and evaluates the moral demands placed on the parent attempting to perform them. On their journey to provide for their child the best life possible, parents must alter their own lives and attitudes, and become the sort of person who can perform the necessary caregiving.

Raising a child with special needs demands from the parent a reassessment of their personal and social lives. Some of the consequences, such as the presumed emotional and physical burden of constant attentiveness and the numerous unexpected responsibilities, have been reported previously. But the need for competence, which drives an acquisition of medical knowledge, has not previously been analyzed, nor has there been recognition of the enormous moral task of encouraging identity formation in a child with intellectual delays or disabilities. For a child who cannot attain independence, parents must continue to provide care and support into an uncertain future.

Extreme Caregiving

The Moral Work of Raising Children with Special Needs

Lisa Freitag

Preface
Chapter 1 - Introduction
Chapter 2 - Defining Extreme Caregiving
Chapter 3 - Hard Labor
Chapter 4 - Narrative and the Phases of Care
Chapter 5 - Attentiveness/Responsibility: The Invisible Work of Care
Chapter 6 - Competence
Chapter 7 - Responsiveness
Chapter 8 - Holding the Future
Chapter 9 - Conclusion: Caring With
References

Extreme Caregiving

The Moral Work of Raising Children with Special Needs

Lisa Freitag

Author Information

Lisa C. Freitag practiced as a pediatrician for over twenty-five years, before returning to school to pursue an interest in the families of children with special needs. She received a Masters degree in Bioethics from the University of Minnesota Center for Bioethics in 2013. She continues to work in clinical ethics and explore the intersection between medicine and caregiving.

Extreme Caregiving

The Moral Work of Raising Children with Special Needs

Lisa Freitag

Reviews and Awards

"Advances in medical technology have made it possible for doctors to save premature and/or severely disabled babies who would have died in any other century. And yet no one is talking about what this means (practically, emotionally, socially) for the parents of those babies - parents who are often called upon to create home ICUs and to devote their lives to what Lisa Freitag calls "extreme caregiving". For everyone in the medical profession - and for everyone who has wondered what it means to be a parent - this book is essential reading." -- Michael Berube, Pennsylvania State University, author of Life as Jamie Knows It: An Exceptional Child Grows Up

"Sympathetic, thoughtful, and often moving, without judgment, doctor talk, or romanticizing cliches, this book illuminates a role so under-acknowledged by medical providers, so taken for granted by society at large, it has long been rendered almost invisible. By weaving together candid accounts from recent memoirs, thorny issues raised in her work as a pediatrician, and memories, rich in emotion and meaning, of family experiences with her own brother, Lisa Freitag makes us care, at long last, about those thrust into lives they never expected and who might well struggle to succeed. Look over here, this work of much-needed advocacy says. Pay attention to our stories, too." -- Rachel Simon, author of The Story of Beautiful Girl and Riding The Bus With My Sister

"Extreme Caregiving is a foray into the moral hazard imposed by well-meaning clinicians on patients and their families, written by a pediatrician with a rare and singular vision. Generous, compassionate, yet unsparing, Freitag unfolds a humanistic portrayal of special needs children and their families; how they are "disappeared" in the medical narrative of specialist consultants and the vagaries of social services systems. She delivers this with the clarity and grace of a writer with the uncommon gift of soul and story." -- Mary Faith Marshall, PhD, FCCM, Kornfeld Professor and Director, Program in Biomedical Ethics, University of Virgina

Extreme Caregiving

The Moral Work of Raising Children with Special Needs

Lisa Freitag

From Our Blog

Holding a duality: ambiguity and parenting a child with special needs

In a 2013 interview on NPR celebrating the publication of her memoir, The Still Point of the Turning World, author Emily Rapp made two surprisingly different statements. In her book and on-the-air, Rapp said that she treasured every moment she'd had with her son Ronin, whose short life with Tay-Sachs Disease was the subject of her memoir. Indeed, her telling of Ronin's story is vibrant, and her joy in sharing that story shines through her work.

Posted on December 1, 2017

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