Spina Bifida:
A Resource List
New Mobility Magazine's Spinal Network: The
Total Wheelchair Resource Book , 3 rd edition
Corbet, Barry, and Dobbs, Jean (Eds.) Malibu, CA: New Mobility, 1998.
586 pages. ISBN 0-9661701-1-3.
Information for adults with spinal cord injury, post-polio, multiple sclerosis, muscular dystrophy, spina bifida, cerebral palsy, or amputation. Articles on, travel, sports, employment, independent living, personal assistance services, civil rights, humor, media, legal and financial affairs, and medical research.
Taking charge: Teenagers Talk about Life
and Physical Disabilities
Kriegsmann, Kay Harris, et al. Bethesda, MD: Woodbine House, 1992. 164
pages. ISBN 0-933149-46-8.
Fifteen young people, five of whom have spina bifida, discuss their experiences, opinions, and thoughts about the future.
Children with Spina Bifida: A Parents' Guide
Lutkenhoff, Marlene (Ed.) MD: Woodbine House, 1999. 405 pages. ISBN 0-933149-60-3.
A first, and lasting, resource for parents. This book is the collaborative effort of parents and professionals to give families positive guidance in raising their children with spina bifida. Includes a great reading list, plus Internet sites to explore.
SPINAbilities: A Young Person's Guide to
Spina Bifida
Lutkenhoff, Marlene and Oppenheimer, Sonja (Eds.) Bethesda, MD: Woodbine
House, 1997. 138 pages. ISBN 0-933149-86-7.
This easy-to-read book with humorous illustrations encourages the young person with spina bifida to be independent. Covers health and personal care, social life, and educational issues. A resource for parents as well as for adolescents.
Nobody's Perfect: Living and Growing with
Children Who Have Special Needs
Miller, Nancy B. Baltimore, MD: Paul H. Brookes, 1994. 307 pages. ISBN
1-55766-143-X.
Vignettes from four mothers who share their experiences and emotions about raising children with exceptional challenges. One of the parents has a child with spina bifida.
Mobility Aids for Children and Adults with
Spina Bifida
St. Paul, MN: Gillette Children's Specialty Healthcare. Video, 1993, 14
min.
Many mobility options are available to people with spina bifida. The video shows active people moving unaided and with assistive devices, giving families an idea of factors that will influence the type of mobility that is chosen.
Living with Spina Bifida: A Guide for Families
and Professionals
Sandler, Adrian. Chapel Hill, NC: University of North Carolina Press,
1997. 262 pages. ISBN 0-8078-2352-X.
Medical, developmental, and psychological aspects of spina bifida. Addresses issues from the earliest stages of life through young adulthood.
Spina Bifida: The Beginning of a New Journey
St. Paul, MN: Gillette Children's Specialty Healthcare. Video, 1997, 19
min.
A powerful message on the personal success that individuals with spina bifida can achieve.
Periodicals
Disability Resources Monthly
Four Glatter Lane
Centereach, NY 11720
Phone: (516) 585-0290
http://www.disabilityresources.org/
A monthly newsletter chock-full of what is newly published or produced for people with disabilities and their families. The DRM Web site is also a valuable source for links to national/state/local disability interest groups.
Exceptional Parent
555 Kinderkamack Rd
Oradell, NJ 07649
Phone: (201) 634-6550
http://www.eparent.com
This is an excellent magazine for any parent of a child or a young adult with disabilities. Not to be missed: a four-part series on financial planning in the 1999: February-June issues.
Each January Exceptional Parent (EP) consists
of the annual resource guide, a valuable handbook to state and national
organizations, products, and services. EP Library regularly markets quality
books on disabilities in the magazine, or see their online site at: http://www.eplibrary.com.
Web Sites
Children with Spina Bifida: A Resource Page
for Parents
http://www.waisman.wisc.edu/~rowley/sb-kids/index.htmlx
A very friendly and hugely helpful site for the information-seeking family.
National Information Center for Children
and Youth with Disabilities (NICHCY)
http://www.nichcy.org/
One of America's premiere clearinghouses for family-centered information. Search the NICHCY database for fact sheets and for organizations that provide advice and assistance.
Spina Bifida Association of America
http://www.sbaa.org
The chief draw of this site is its comprehensive publication list, offering vital information on living with spina bifida for children and adults. The association sells pamphlets, books and videos. Also a nice set of Web links to related organizations.
Medlineplus: Spina Bifida
http://www.nlm.nih.gov/medlineplus/spinabifida.html
Reliable information for parents of children with spina bifida and for adults who have spina bifida.
Find more information about this subject in the online catalog of our Disability Resource Library.
