Cleft References & Resources
Books
Batshaw, Dr. Mark L. (1991). Your Child Has a Disability: A Complete Sourcebook of Daily and Medical Care. Boston: Little, Brown and Company. (Available from Little, Brown and Company, Attention: Order Department, 200 West Street, Waltham, MA 02154. Telephone: 1-800-759-0190.) A book that offers practical information to help parents meet the daily physical and emotional needs of their child with a disability. Includes information on finding the right doctor, the daily and long-term care requirements of different disabilities, behavior management techniques, nutrition, the use of medications, and much more.
Callahan, Charles. (1990). Since Owen: A parent-to-parent guide for care of the disabled child. Baltimore, MD: Johns Hopkins University Press. (Available from Johns Hopkins University Press, Hampden Station, Baltimore, MD 21211. Telephone: 1-800-537-5487.) A book which addresses the challenges of raising a child with a disability by offering both the author's personal experiences and practical suggestions and insights. Discusses the life span of issues, including genetic counseling for parents, issues associated with hospitalization of children with disabilities, their transition from the hospital to home, the family's emotions and stress, support resources, the special education system, and the child's transition to adult life.
Dickman, Irving. (1993). One miracle at a time: Getting help for a child with a disability (rev. ed.). New York: Simon & Schuster. (Available from Simon & Schuster, 200 Old Tappan Road, Old Tappan, NJ 07675. Telephone: 1-800-223-2336.) A book which offers emotional and practical support to parents of children with disabilities. Shares the struggles, strategies, and successes of other parents in regard to caring for a child with disabilities, working with medical professionals, collaborating with school personnel, being an effective advocate, identifying and using assistive technology devices, and providing for the needs of family members. Includes a wealth of information about disability resources.
Krahl, Rhonda. (1990). Rebuilding your dream: Family life with a disabled child. Iowa City: Author. (Available from Publications Order Department, 100 Oakdale, M105, Iowa City, IA 52242-5000. Telephone: 1-800-235-2665.) A book for parents of children with disabilities.. Deals with the many emotions that parents experience when they find their child has a disability. Suggestions are given for adjusting and adapting, maintaining the marriage relationship, meeting the needs of other children in the family, helping grandparents, facing the world, and working with professionals.
Lawrence, K., Johnson, G., & Stepanek, J. (Eds.). (1994). Parent resource directory (5th ed.). Bethesda, MD: Association for the Care of Children's Health. (Available from the Association for the Care of Children's Health, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (301) 654-6549.) Directory which helps locate family members who are willing to share their interests, experiences, and expertise. Has been used to find parent-to-parent support, identifying parents with specific types of expertise related to program development, policy formulation, and legislative and other advocacy activities. Lists more than 450 parents/caregivers, including contact information and their child's condition and areas of interest/expertise. Organized/indexed by state/province, names, types of conditions, and topical areas.
Miller, N.B. (1994). Nobody's perfect: Living and growing with children who have special needs. Baltimore, MD: Paul H. Brookes. (Available from Paul H. Brookes, P.O. Box 10624, Baltimore, MD 21285-0624. Telephone: 1-800-638-3775.) A book for parents that is filled with the voices of other parents who have children with special needs. Discusses the range of emotions many parents experience in raising a child with a disability and offers strategies and emotional support to help parents address parenting issues, work effectively with professionals, and take care of themselves and their children.
Turnbull, A.P., Patterson, J.M., Behr, S.K., Murphy, D.L., Marquis, J.G., & Blue-Banning, M.J. (Eds.). (1993). Cognitive coping, families, and disability. Baltimore, MD: Paul H. Brookes. (Available from Paul H. Brookes, P.O. Box 10624, Baltimore, MD 21285-0624. Telephone: 1-800-638-3775.) A books which offers parents and family members a set of strategies for coping with and successful addressing the daily challenges of disability. Based on the findings of research and the personal experiences of parents, discusses cognitive coping, its impact upon family adjustment and adaptation to stress, and its power to help families enhance their senses of esteem, control, meaning, and well-being.
Other Printed Materials The Exceptional Parent. A magazine published twelve times a year for parents, individuals, organizations, librarians, schools, and agencies. (Available from The Exceptional Parent, P.O. Box 3000, Denville, NJ 07834. Telephone: 1-800-562-1973.)
