Parenting A Child With Special Needs: A Guide To Readings And Resources

NICHCY News Digest
Second Edition
February 1997

Source

National Information Center
for Children and Youth with Disabilities

Contents

Forums

Related Articles

Abstract

When parents learn that their child has a disability or a chronic illness, they begin a journey that takes them into a life that is often filled with strong emotion, difficult choices, interactions with many different professionals and specialists, and an ongoing need for information and services. Initially, parents may feel isolated and alone, and not know where to begin their search for information, assistance, understanding, and support. This News Digest has been developed expressly to respond to the information needs of parents -- those who have just learned their child has special needs and those who have lived with this reality for some time but who have reached a transition point where they need new information or renewed support. This issue provides a starting point for families in their search for information and resources. We hope that it will also be useful to professionals who work with families who have a child with a disability, helping them to understand how having a child with a disability can affect the family and providing them with a ready resource to share with the parents with whom they work.

In the first article, "You Are Not Alone," Patty McGill Smith speaks candidly to parents about the emotions that many parents of exceptional children experience and offers a perspective for living and coping with the impact of disability upon the family. The second article, "The Unplanned Journey," delves into the areas in which parents and families often need information and offers suggestions about potential resources. Included in this article are discussions of such issues as: adjusting to this new life, accessing information and services, supporting the needs of the family, finding child care, addressing financial concerns, working with professionals, and planning for the future. This News Digest concludes with an extensive bibliography of print resources organized around these critical issues, as well as a list of print resources on specific disabilities. Organizations that can provide families with additional information, support, or referral are also listed.

Credits

News Digest is published three times each year. NICHCY disseminates other materials as well and can respond to individual requests. For further information and assistance, or to receive a NICHCY Publications List, contact NICHCY, P.O. Box 1492, Washington, DC 20013, or call 1-800-695-0285 (Voice/TT). Visit our Web site (http://www.nichcy.org) or our gopher (gopher aed.org). You can also send us E-mail: nichcy@aed.org

NICHCY thanks our Project Officer, Ms. Marie Roane, at the Office of Special Education Programs, U.S. Department of Education. We also thank the following individuals for their thoughtful review and valuable insights on drafts of the News Digest as it was originally produced in 1993: Susan Duffy, Parent, Writer, and Advocate, Missoula, MT; Theresa Rebhorn, Parent Educational Advocacy Training Center (PEATC), Alexandria, VA; and Ann Gordon, Child Find, Falls Church, VA.

Project Staff
Project Director: Suzanne Ripley
Editor: Lisa Kupper
Associate Editor: Mary Kate Conroy

Authors
You Are Not Alone:
Patty McGill Smith
National Parent Network on Disabilities
Alexandria, Virginia

The Unplanned Journey:
Carole Brown, Ph.D.
The George Washington University, Washington, DC

Samara Goodman, M.A.
Fairfax County Schools, Fairfax, Virginia

Lisa Kupper
NICHCY, Washington, DC

Your comments and suggestions for News Digest are welcomed. Please share your ideas and feedback with our staff by writing to the Editor.

Publication of this document is made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

The Academy for Educational Development, founded in 1961, is an independent, nonprofit service organization committed to addressing human development needs in the United States and throughout the World. In partnership with its clients, the Academy seeks to meet today's social, economic, and environmental challenges through education and human resource development; to apply state-of-the-art education, training, research, technology, management, behavioral analysis, and social marketing techniques to solve problems; and to improve knowledge and skills throughout the world as the most effective means for stimulating growth, reducing poverty, and promoting democratic and humanitarian ideals.