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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 natio&ngrave;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, Whòll Take Care of Me? Forgotten Children of the AIDS Epidemic, which will be shown on PBS and is also available from Yale University Press.
This book had its start in the voices of four women, all infected by HIV, who spoke of their hopes and fears as they reflected upon the uncertain futures that their children would face after their deaths. The voices of these women soon were joined by those of other mothers, of fathers and grandparents, foster and adoptive parents, and of the children themselves. They all spoke about the forgotten children of the AIDS pandemic, their children, who were not themselves infected and were fated to survive the AIDS-related deaths of their parents, siblings, friends and neighbors, often in silence and secrecy. The power of their voices gave rise to our involvement in the production of a video documentary, Mommy, Who'll Take Care of Me?, about the experience of these forgotten children.
Our research for this documentary quickly confirmed that these children are largely invisible to both the academic and service communities. Uninfected by HIV, they were not viewed as patients by the medical community. Often unable to share their family secrets and losses, they were invisible as well to schools, churches, courts, and community organizations. While the lay press has increasingly published articles about "AIDS orphans," the scholarly literature has been virtually devoid of research concerning the experience of the children being affected by HIV disease. Few professionals seemed to be helping to plan for their futures, or even to recognize that they existed. The continuing invisibility of these AIDS-affected children was impressed upon us in a discussion with Rosa DeLauro, the congressional representative (D. -Connecticut) for many who have worked on this volume. Shown portions of this book, she declared, "You know, these kids aren't even on the radar screen."
This book's primary goal is to place these forgotten children of the AIDS epidemic on the "radar screen" of professionals, public policy makers, and community workers by providing, in one volume, a broad and comprehensive overview of the experience of children who are affected by AIDS.
We envision several audiences for this book. It is written for social workers, teachers, school nurses, attorneys and judges, juvenile justice personnel, and other professionals in community organizations who may not yet understand the many ways that HIV disease affects children who are not themselves infected. It also is intended for professionals who have some background in child mental health but who have not yet had significant experience working with children affected by HIV. The book seeks to inform policy makers at the state and national levels who have the capacity to craft legislation and administrative remedies for some of the problems faced by HIV-affected children and the families who care for them. Finally, we hope this book will help family members struggling with HIV disease and others in our communities to better understand the impact of the disease on the "well" children in the family.
We do not intend this book to be the definitive work about AIDS-affected children for all time. Given the current dearth of research on these children, no work could responsibly make that claim. Rather, the book provides a multi-disciplinary overview of what we now know about these children and their needs, and an agenda for policy reform and research over the next several years. We hope that this book will not be an enduring work. We trust that its policy recommendations will grow obsolete as they become more fully implemented. We hope our discussion of the harm that society's continued stigmatization of AIDS causes these children will encourage all of us to look more critically at ourselves and at our biases. Most fundamentally, we fervently hope for a change in the course of the AIDS pandemic, so that we will be proved wrong in our projections of the number of children who will endure life-altering losses while surviving AIDS in their families.
|Pt. 1||Voices: A Mother and Two Children|
|Me on the Outside, Me on the Inside||8|
|Pt. 2||The Challenge of AIDS to Children and Youth|
|A Pandemic Out of Control: The Epidemiology of AIDS||19|
|Medical Aspects of AIDS: What Do Children Witness?||32|
|The Special Case of the Uninfected Child in the HIV-Affected Family: Normal Developmental Tasks and the Child's Concerns About Illness and Death||50|
|Mommy and Me||64|
|Uncertainty, Stigma, and Secrecy: Psychological Aspects of AIDS for Children and Adolescents||71|
|Adolescents Living in Families with AIDS||83|
|Children and AIDS in a Multicultural Perspective||95|
|What Can We Learn from Children of War?||107|
|Pt. 3||Responding to the Needs of Children and Youth Affected by AIDS|
|A Second Family? Placement and Custody Decisions||125|
|Toward a Child-Responsive Legal System||140|
|Building Child- and Family-Responsive Support Systems||165|
|Today's Challenges, Tomorrow's Dilemmas||190|
|Agenda for Action||205|
|Pt. 4||Voices: Children, Parents, and Caregivers|
|The Reverberating Themes||221|
|The Voices of Children||223|
|I Miss You|
|My Life Has Not Been Very Easy|
|The Voices of Parents and Caregivers: "Matthew", Marva, "Grace", "Ann"||232|
|Epilogue: Women and Children in a Time of Plague in America|