Extreme Caregiving

Raising a child with multiple special needs or disabilities is a time-consuming and difficult task that exceeds the usual parameters of parenting. This book examines all the facets of that task, from the better-known physical, financial, and emotional burdens to the previously invisible moral work involved. Drawing from narratives written by parents of children with a variety of special needs, academic research in ethics and disability, and personal experience in pediatrics, this book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a virtue ethic framework based on Joan Tronto’s phases of care, it isolates the various tasks involved and evaluates the moral demands placed on the parent performing them. Raising a child with special needs requires an excess of attentiveness, responsibility, competence, and responsiveness, and demands from the parent a reassessment of their personal and social lives. In each phase, moral work must be done to become the sort of person who can perform the necessary caregiving. Some of the consequences are predictable, such as the emotional and physical burden of constant attentiveness and numerous unexpected responsibilities. 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 autism. For a child who cannot attain independence, parents must continue to provide care and support into an uncertain future.