Selections from the National Center for Education in Maternal and Child Health Reference Collection
April 1997

This bibliography presents a selective overview of materials on the topic of parenting a child with a disability. The items listed may be obtained from the sources cited.

Association for the Care of Children's Health. Your child with special needs at home and in the community. Bethesda, MD: Association for the Care of Children's Health, 1991. 29 pp.

Contact: Association for the Care of Children's Health, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (301) 654-6549. $2.50; bulk rates available.

This booklet offers practical information on family life, managing medical care, school, and finances. Extensive listings of books and organizations are included. This publication was produced as part of the Association for the Care of Children's Health's MCH-funded project to develop a nationwide program to enhance the implementation of a family-centered approach to care for children with special health needs. [Funded by the Maternal and Child Health Bureau]

Bowman, P., et. al. From the heart: Stories by mothers of children with special needs. Portland, ME: Parents in Partnership Project, University of Southern Maine, 1994. 151 pp.

Contact: Jayne Marsh, Edmund S. Muskie Institute of Public Affairs, Child and Family Center, University of Southern Maine, Post Office Square, P.O. Box 15010, Portland, ME 04112. Telephone: (207) 780-5822 / Fax (207)780-5817 / Email jaynem@usm.maine.edu. $12.00 plus 10 percent shipping and handling. no. B050129.

This book contains stories that chronicle the struggles and successes, happy endings and setbacks, failures and accomplishments that are daily experiences of families raising a child who is different one way or another from what is considered normal. Project Parents in Partnership is designed to assist in the development of a continuum of services to parents of young children with special needs. [Funded by the Maternal and Child Health Bureau]

Callanan, C. R. Since Owen: A parent-to-parent guide for care of the disabled child. Baltimore, MD: Johns Hopkins University Press, 1990. 466 pp.

Contact: Johns Hopkins University Press, 701 West 40th Street, Suite 275, Baltimore, MD 21211. Telephone: (410) 516-6960. $16.95.

Written by the parent of a severely disabled child, this book will alert parents to the many areas that affect the child with a disability. It covers family planning, birth, being in the hospital, coping with the first few years at home, appropriate education, and life in the adult world. It includes a list of dos and don'ts and a list of resources for further information.

Capper, L. That's my child: Strategies for parents of children with disabilities. Washington, DC: Child and Family Press, 1996. 198 pp.

Contact: Child Welfare League of America, c/o CSSC, P.O. Box 7816, 300 Raritan Center Parkway, 08818-7816. Telephone: (800) 407-6273 / (908) 225-1900 / Fax (908) 417-0482. $12.95 plus shipping and handling; no shipping and handling if prepaid. ISBN 0-87868-595-2.

The book covers a broad range of information that parents of children with chronic illnesses or disabilities need. It reviews the roles that the parents will need to play including care giver, social worker, advocate, a parent fostering the growth and development of their child, and as a liaison with others. It also includes information on working with health professionals, rights and services guaranteed by federal law, working with school systems to provide special education, child day care, and recreational activities, among other topics. Appendices include definitions of disabilities, lists of organizations, a bibliography, and a glossary.

Children's Hospital, Boston, Project School Care. Working toward a balance in our lives: A booklet for families of children with disabilities and special health care needs. Boston, MA: Project School Care, Children's Hospital, 1992. 90 pp.

Contact: Judith Palfrey, M.D., Director, Project School Care, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115. Telephone: (617) 735-6714 / Fax (617) 735-7940.

This booklet is designed to help parents of children with special health needs deal with their children's experiences in the hospital, at home, and at school. It was developed by a group of parents and staff of Project School Care, a program at Children's Hospital, Boston. Project School Care was established to foster educational opportunities for children with special health needs, particularly those assisted by medical technology. The booklet discusses the hospital experience, common questions after hospitalization, home care, home nursing, respite care, financing health care, equipment, education, vocational training and planning for adulthood, recreation and travel, and record keeping. Appendices include a list of resource organizations, suggested readings, and a glossary. The booklet was supported by grants from the U.S. Maternal and Child Health Bureau and the Charles A. Lindbergh Fund. [Funded by the Maternal and Child Health Bureau]

Cooper, A., and Harpin, V. (Eds.). This is our child: How parents experience the medical world. New York, NY: Oxford University Press, 1991. 152 pp.

Contact: Oxford University Press, 2001 Evans Road, Cary, NC 27513. Telephone: (800) 451-7556 / (919) 677-0977 / Fax (919) 677-1303. $14.95.

This book, written for all health professionals working with children and their families, is a collection of personal accounts by parents and adolescents of their experiences with their child's illness, including premature birth, congenital anomalies and genetic disorders, and of the medical world. Each account is followed by a brief medical explanation. The book is designed to facilitate discussion between parents and professionals and provide support to parents and children who find themselves in similar situations.

Exceptional Parent. Exceptional parent: Parenting your child or young adult with a disability. Oradell, NJ: Psy-Ed Corporation, 1970-. monthly.

Contact: Psy-Ed Corporation, 555 Kinderkamack Road, Oradell, NJ 07649. Telephone: (800) 247-8080 / Email Web site: http://www.familyeducation.com. $28.00 per year.

This magazine contains articles of interest to parents and professionals on such topics as education, advocacy, treatment, and care of children and young adults with special health needs.

Finston, P. Parenting plus: Raising children with special health needs. New York, NY: Viking Penguin Press, 1990. 295 pp.

Contact: Viking Penguin Press, 375 Hudson Street, New York, NY 10014. Telephone: (212) 366-2000. $19.95.

This book gives advice on how to deal with the difficulties of raising children who are handicapped or chronically ill. Its chapters cover learning to identify the problem and live with it, not feeling sorry, teaching children to care for themselves, helping them make friends and deal with enemies, making the professional a partner, helping adolescents develop independence, and staying in the mainstream. It won the 1991 media award from the President's Committee on Employment of People with Disabilities.

Heustis, J., Kressley, K. G., Greer, M., and Klein, S. Parent liaison training manual: A resource guide for parent educators working within medical and social work teams. Indianapolis, IN: Indianapolis Parent Information Network, 1993. ca. 200 pp.

Contact: Librarian, National Center for Education in Maternal and Child Health, 2000 15th Street North, Suite 701, Arlington, VA 22201. Telephone: (703) 524-7802 / Fax (703) 524-9335 / Email info@ncemch.org; Web site: http://www.ncemch.org. Available for loan.

This training manual complements the skills of parent liaisons, parents of children with special health needs who work within a medical and social work team to assist other families to become more effective caregivers for their own children with special health needs. This guide aims to increase the parent liaison's understanding of families and how they cope with special issues; enhance their communication and problem-solving strategies; and clarify their roles and responsibilities. Resources include a bibliography; a glossary of medical, disability and education terms; fact sheets about medical conditions; reprints of some of the additional readings; and resource directories. Each topic area includes case studies, instructional activities, and suggested readings. [Funded by the Maternal and Child Health Bureau]

May, J. Circles of care and understanding: Support programs for fathers of children with special needs. Bethesda, MD: Association for the Care of Children's Health, 1992. 85 pp.

Contact: Association for the Care of Children's Health, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (301) 654-6549 / Fax (301) 986-4553. NMCHC inv.code F063.

This manual is designed for those who organize and facilitate support groups for fathers of children with special health needs. It provides background information, and discusses getting started, effective leadership and facilitation, organization, and evaluation. Appendices include sample materials and program ideas. [Funded by the Maternal and Child Health Bureau]

May, J. (Ed.). National Fathers' Network newsletter. Bethesda, MD: National Fathers' Network, National Center for Family-Centered Care, Association for the Care of Children's Health, 1993-.

Contact: National Fathers' Network, National Center for Family-Centered Care, Association for the Care of Children's Health, 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (301) 654-6549. Price unknown.

This newsletter contains short articles, responses, ideas, and commentary written by and for fathers of children with special health needs.

MetroHealth Medical Center, Pediatric Service Coordination Program. My book: A family care plan. Cleveland, OH: Pediatric Service Coordination Program, MetroHealth Medical Center, 1991. 75 pp.

Contact: SKIP of Ohio, P.O. Box 93016, Cleveland, OH 44101-5016. Telephone: (216) 283-6525. $20.00.

This notebook was created to assist in organizing the discharge process for a child with complex needs. It serves as a record of what has been done to prepare a family to care for their child at home, and attempts to promote a philosophy of family-centered care. It includes sections on family concerns, assessment, education, follow-up, emergencies, plans, and home records. [Funded by the Maternal and Child Health Bureau]

Michigan Department of Public Health, Bureau of Child and Family Services, Division of Children's Special Health Care Services, Parent Participation Program, Project: Uptown. Packaging wisdom. Lansing, MI: Project: Uptown, Children's Special Health Care Services, Michigan Department of Public Health, 1995. 32 pp.

Contact: Sue Middleton, Children's Special Health Care Services, Michigan Community Public Health Agency, P.O. Box 30195, Lansing, MI 48909-7695. Telephone: (517) 335-8959 / Fax (517) 335-9419. Available at no charge. P-974.

This handbook is designed to record in one place all the pertinent and necessary information that a parent will need when an emergency arises. Multiple forms cover all aspects of a child's medical and social history. A glossary of commonly used terms is included. [Funded by the Maternal and Child Health Bureau]

Moffitt, K., Reiss, J., and Nackashi, J. (Eds.). Special children, special care. Tallahassee, FL:Florida Developmental Disabilities Planning Council, ca. 1992. ca. 350 pp.

Contact: USF Bookstores, 4202 E. Fowler Avenue, Tampa, FL 33620. Telephone: (813) 974-2631. $28.95, make checks payable to USF.

This training and resource manual for families and others who care for children with special health needs is intended to address the challenges and issues facing families as they care for their children at home. Part I, Care Management, includes information related to record keeping, emotional aspects, family affairs, financial assistance, legal issues, and educational needs. The second part, Care Provision, includes skills and techniques needed for using equipment, dispensing medication, meeting daily physical needs, and providing basic home health and first aid techniques. The manual includes forms, checklists and charts for parents to record information on the care of their child. Resource lists and bibliographies are provided at the end of each section.

National Fathers' Network. Equal partners: African-American fathers and systems of health care. Bellevue, WA: National Fathers' Network, Kindering Center, 1996. 1 videotape (25:50 minutes), 1 guide (ca. 75 pp.).

Contact: National Maternal and Child Health Clearinghouse, 2070 Chain Bridge Road, Suite 450, Vienna, VA 22182-2536. Telephone: (703) 356-1964 / Fax (703) 821-2098 / Email nmchc@circsol.com. Available at no charge. NMCHC inv.code I086.

This videotape is designed to portray the unique challenges African American fathers confront when working with the health care delivery system, to investigate means for health care delivery systems to be inclusive of African American fathers as equal partners, and to portray positive images of African American fathers' involvement in their families. The videotape particularly focuses on fathers whose children have special health needs. The guide provides information about the project, a discussion guide for use with the video, assessment instruments, program suggestions, lists of organizations and materials for further information, and a set of articles. [Funded by the Maternal and Child Health Bureau]

National Pediatric HIV Resource Center. You're in charge: Your child's health care. Newark, NJ: National Pediatric HIV Resource Center, 1992. 1 videotape (18 minutes).

Contact: Television and Film Production, 1736 Columbia Road, N.W., Suite 110, Washington, DC 20009. Telephone: (202) 797-0818 / Fax (202) 232-2261. Contact source for price information.

This videotape is designed to help parents of children with chronic illness to become informed and proactive consumers of medical and social services. It features health care professionals describing their roles, parents sharing experiences about learning to cope with chronic illness, and demonstrations of successful partnerships between service providers and parents. [Funded by the Maternal and Child Health Bureau]

Nurses' Association of the American College of Obstetricians and Gynecologists. Questions to ask when your baby needs special care: Your role as a parent. Washington, DC: Nurses' Association of the American College of Obstetricians and Gynecologists, 1991. 13 pp.

Contact: Association of Women's Health, Obstetric, and Neonatal Nurses, 700 14th Street, N.W., Suite 600, Washington, DC 20024-2188. Telephone: (800) 673-8499 / (202) 662-1600 / Fax (202) 737-0575. Minimum order 50 pamphlets, $25.00.

This pamphlet is designed to help parents whose newborn has problems requiring special care in the hospital's nursery. It is intended to help the parents understand their feelings and take an active role in their baby's care.

Pueschel, S. M., Scola, P. S., Weidenman, L. E., and Bernier, J. C. Special child: A source book for parents of children with developmental disabilities. (2nd ed.). Baltimore, MD: Paul H. Brookes Publishing Company, 1995. 436 pp.

Contact: Paul H. Brookes Publishing Company, P.O. Box 10624, Baltimore, MD 21285. Telephone: (800) 638-3775 / (410) 337-9580 / Fax (410) 337-8539. $26.00. ISBN 1-55766-167-7.

Written for parents of children with developmental disabilities, this book is designed as a general resource for helping parents manage the complex issues involved in caring for their child. It points out how to recognize developmental problems and how to obtain an evaluation that may lead to a specific diagnosis. It discusses the effects a disability can have on family life. It suggests ways to choose a health specialist and describes the parent-professional partnership that is important for enhancing a child's care. Several sections highlight a number of specific tests and procedures, medications, treatments, and operations commonly performed. Other sections focus on educational and legal issues and on learning about and utilizing community resources. The book concludes with a list of resource organizations and a suggested reading list.

Turnbull, A. P., Patterson, J. M., Behr, S. K., Murphy, D. L., Marquis, J. G., and Blue-Banning, M. J. (Eds.). Cognitive coping, families, and disability. Baltimore, MD: Paul H. Brookes Publishing Company, 1993. 321 pp.

Contact: Paul H. Brookes Publishing Company, P.O. Box 10624, Baltimore, MD 21285. Telephone: (800) 638-3775 / (410) 337-9580 / Fax (410) 337-8539. $28.00.

Based on the findings of a participatory research conference sponsored by the Beach Center on Families and Disability and the Center for Children with Chronic Illness and Disability at the University of Minnesota, this book examines cognitive coping as a set of strategies that encourages individuals and families to successfully confront the daily challenges of disability. Empirical, theoretical, clinical, and consumer perspectives on disability and cognitive coping are revealed in discussions of family adjustment and adaptation to stress; empirical findings on coping strategies; conceptual and definitional issues; determinants of individual coping and coping style; and methodological issues and barriers.

University of Southern Maine, Edmund S. Muskie Institute of Public Affairs, Parents in Partnership Project. Parenting a child with special needs: Interviews with parents. Portland, ME: Parents in Partnership Project, University of Southern Maine, 1993. 3 videotapes (20:52, 24:43,27:31 min.), 1 booklet (20 pp.).

Contact: Jayne Marsh, Edmund S. Muskie Institute of Public Affairs, Child and Family Center, University of Southern Maine, Post Office Square, P.O. Box 15010, Portland, ME 04112. Telephone: (207) 780-5822 / Fax (207) 780-5817 / Email jaynem@usm.maine.edu. $30.00 plus 10 percent shipping and handling. nos. V020019, V020020, V020021.

These three videotapes cover distinct topics facing parents with a child with special needs. The topics are: Learning a diagnosis for the first time; Coping with a child with special needs; and Fathering a child with special needs. Along with each tape is a guide which gives a brief background to the subjects and suggests questions for leading a discussion. The parents describe the impact of the news on themselves and their families, the nature of the social support they received in the process, and how they would like to be treated in the parent-professional partnership. [Funded by the Maternal and Child Health Bureau]

Wolszon, M., Peet, L., Jones, D., Goldberg, P., and Goldberg, M. Celebrating family strengths: A handbook for families. Minneapolis, MN: PACER Center, 1993. 22 pp.

Contact: PACER Center, 4826 Chicago Avenue South, Minneapolis, MN 55417. Telephone: (612) 827-2966 / Fax (612) 827-3065. $2.50; includes postage and handling; make checks payable to the PACER Center.

This booklet is designed to help parents, particularly those having children with special health needs, learn how to focus on their children's and their family's strengths. It suggests ways for families to recognize and appreciate their own strengths, stories and traditions. It also expresses the need for good communication, positive messages, and recognizing responsibilities and when to ask for help.

Meck, N. E., Fowler, S., Ashworth, J. K., Bishop, M. M., Rasmussen, L. B., Thomas, M. K., O'Brien, A., and Claflin, K. S. A manual for using the NICU individualized transition planner: A structured process to facilitate the transition from NICU to home. Kansas City, KS: Child Development Unit, University of Kansas Medical Center, 1993. 51 pp.

Contact: Nancy Meck, Children's Rehabilitation Unit / Kansas University Affiliated Program, The University of Kansas Medical Center, 3901 Rainbow Boulevard, Kansas City, KS 66160-7340. Telephone: (913) 588-5900. Price unknown.

This procedural manual is for parents and professionals who may be involved with the transition of a newborn from the NICU to the home and who are concerned with making this transition as smooth as possible. The manual includes worksheets along with examples of other cases; references, and a guide to using the planner. Also included is a brochure briefly describing the planner.

Ohio Department of Health, Division of Maternal and Child Health, Bureau of Early Intervention. Transition from hospital to home. Columbus, OH: Bureau of Early Intervention, Ohio Department of Health, 1992. 6 pp.

Contact: Bureau of Early Intervention, Ohio Department of Health, 264 North High Street, Columbus, OH 43266. Telephone: (614) 466-3543. Price unknown.

This brochure, designed for families of infants and toddlers with special health needs, provides an overview of the transition process that occurs when their child is discharged from the hospital. It defines the term transition, describes the components of a smooth transition, explains how discharge planning is a part of the process, and lists what the written discharge plan should include. The brochure also provides an area for parents to write in their child's discharge plan and the names of the family's health care resource people.