Forgotten Children of the AIDS Epidemic

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Edited by Shelley Geballe, Janice Gruendel, and Warren Andiman

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"Mommy, why can`t the doctors make you better?"..."You won`t be there, will you? Who`ll take care of me?"—Rachel, age 5

AIDS breaks the rules of dying. It strikes the young rather than the old, decimating families and devastating communities. It will leave as its legacy a generation of orphans—traumatized by multiple losses, isolation, stigma, and grief. By the turn of the century, more than a hundred thousand children and youth in the United States—and ten million worldwide—will lose their parents to AIDS.Written by professionals in medicine, law, social work, anthropology, psychiatry, and public policy, this volume is the first full-length look at the issues facing children whose parents and siblings are dying of AIDS: what children experience, how it affects them, how we can meet their emotional needs and help them find second families, how we counter the stigmas they face. Authors explore ways to promote resilience in these AIDS-affected children. Stories of the children and their caretakers, told in their own words, are woven throughout.Pioneering and practical, the book presents an action agenda and resource directory for our nation`s policymakers as well as for parents and those who work with children in both formal and informal settings.

This book is produced in conjunction with a video, Mommy, Who`ll Take Care of Me? Forgotten Children of the AIDS Epidemic, which will be shown on PBS and is also available from Yale University Press.

Shelley Geballe, J.D., a civil rights attorney with a speciality in child welfare and AIDS law, is in the MPH/PhD program at the Yale School of Medicine. Janice Gruendel, Ph.D., served as a senior government official in the State of Connecticut in health and child welfare and is vice president of Rabbit Ears Productions, a children`s multimedia production company. Warren Andiman, M.D., is professor of pediatrics and epidemiology at Yale University and director of the Yale-New Haven Hospital Pediatric AIDS Program.

"This timely, urgently-needed book, compiled and co-authored by experts in pediatrics, psychology, public health, public administration, and the law, is concerned with children in the AIDS epidemic who are at risk of being neglected and forgotten. Although timely and painfully at the cutting edge of our ignorance, this volume is also a fine repository of our best knowledge that will be an essential reference for years to come. It is also a marker for historians and clinical scholars who are concerned with preparing and planning for epidemics yet to come. We are indebted to the editors and contributors to Forgotten Children of the AIDS Epidemic because they have enabled us to apply our understanding in limiting damage to these children and in enlarging and advancing our knowledge about all children and their families. They have lifted our awareness to a level of sophistication and hope that is useful and worthwhile."—Albert J. Solnit, M.D., Commissioner Department of Mental Health State of Connecticut

"In ways that many would have never imagined only a few short years ago, AIDS is leaving an indelible mark on this nation and the world. Confronted by a society that is alternately indifferent and viciously hateful, children who have endured the illness and death of a parent, or more often both parents, to AIDS have at long last begun to be considered as a group, with distinct and urgent needs. Forgotten Children of the AIDS Epidemic combines the personal experience of these children and their parents with the insight of a broad range of professionals and will serve as an invaluable primer as we confront more often the problems of the orphans of AIDS."—Anthony Turney, Executive Director, The Names Project Foundation

"[Forgotten Children of the AIDS Epidemic] provides a great deal of information with touching insights into the thoughts, works, and views of the children involved. . . . This is a highly recommended book for all libraries and should be on the desk of any professional who is responsible for the well-being of these children without parents."—AIDS Book Review Journal

"This publication is a landmark contribution to the literature of the aids epidemic and will be of particular interest to mental health specialists, advocates, policymakers, and planners and all who work in health care."—Monnie B. Callan, Journal of the American Medical Association

"A well-organized book that assembles detailed information on the various influences affecting the emotional and physical well-being of [children affected by AIDS] across the developmental stages of infancy through adolescence. . . . Such a wealth of information in one source makes this a valuable addition to the professional's library."—Gail Amemiya, Readings: A Journal of Reviews and Commentary in Mental Health

"Such a wealth of information in one source make this a valuable addition to the professional library."—Max G. Magnussen, Readings: A Journal of Reviews and Commentary in Mental Health

"The reality of AIDS and its devastating effect on children comes alive in this comprehensive study."—Joanne Rooney, Educated Leadership

"Every now and then an innovative, needed, exciting and challenging book slips onto the market. This text, with its touching pictures, balanced approach and challenging content, is one such book."—Lorraine Sherr, AIDS Care

"The editors have put together sixteen contributions from the fields of law, medicine, welfare and education. They make suggestions for changes in the law to combat discrimination, suggest improved and specialized social services and ask for more money for this most underfunded section of the system. They also call for more kindness and compassion for the sufferers of HIV by including the heart-rending words of the children themselves. . . . There is much to interest anybody working with HIV infected people or in education and child welfare."—Gloria May, The Therapist

"Thoughtful, well written, and informative. . . . I heartily recommend this fine book to anyone who cares about children, the AIDS epidemic, the problems of the health care bureaucracy, or issues associated with death and dying. It is an important testament for our time."—Mindy Thompson Fullilove, M.D., Journal of Nervous & Mental Disease

"This is a moving book about an overwhelming tragedy. . . . For those who work both with AIDS children and physically healthy children in an AIDS-infected family, this is a very practical resource. It is written primarily for social workers, teachers, school nurses, attorneys and judges, juvenile justice personnel and professionals who may not yet understand fully the many ways the HIV disease can affect children who are not themselves infected. . . . . I found the poignant stories of the children and their caretakers, told in their own words to illustrate the anger, frustration, fearfulness, uncertainty and at times hopes of those affected in one way or another by this ruthless illness, both tragic and revealing."—Child & Family Behavior Therapy

ISBN: 9780300062717
Publication Date: January 25, 1995
308 pages, 6 x 9
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