Children with Spina Bifida: A Parents’ Guide

Edited by Marlene Lutkenhoff, R.N., M.S.N.

2nd Edition. Woodbine House Special Needs Collection, 2008, 415 pp.

As in the first edition, professionals and parents contributed material to this second edition, with the goal of helping other parents navigate the medical, educational, and legal issues of spina bifida or myelomeningocele. With a foreword by Drake Crittenden Ash, a parent who shares how important it was to her family to connect with others whose children have the same diagnosis, this new edition includes updated research and medical developments. Ms. Crittenden notes that even for the most organized families, it’s easy to become overwhelmed by the number of medical professionals involved in a child’s care. She encourages parents and other caregivers to understand the diagnosis, as it will help them advocate on the child’s behalf.

The chapters provide information about preparing a child for a hospitalization, the surgeries, urologic and bowel concerns, the importance of diet and nutrition, orthopedics and physical therapies, as well as assistive devices a child may need to help build strength.

Each chapter ends with parent statements. Parents also contributed chapters about coping, finding support for themselves and their other children, and maintaining good communication with medical and educational teams. In addition, they share strategies for helping their child be emotionally healthy and self-confident.

There is an in-depth discussion about the federal laws that protect the educational and civil rights of children with disabilities. There is also information about planning for the future, and a chapter written by a young adult with spina bifida.

Teaching Motor Skills to Children with Cerebral Palsy and Similar Movement Disorders: A Guide for Parents and Professionals

By Sieglind Martin, M.S., P.T.

Woodbine House Special Needs Collection, 2006, 275 pp

Who hasn’t heard the phrase, “You have to learn to crawl before you walk?” This maxim helps everyone make step-by-step progress in learning new activities. For children with cerebral palsy and other movement disorders, it is absolutely necessary. And this book is a must read for parents who want to understand the sequence of gross motor development, what physical therapists do and why they do it.

There is an explanation of the different types of cerebral palsy, and a discussion of the medical conditions and developmental delays, which may co-occur. This book doubles as an easy-to-read guide for parents who want to participate in their child’s gross motor progress. There are photos that illustrate positions, tips to make activities fun, and ideas that have worked for other families. There’s also a comprehensive list of organizations that provide recreational opportunities for children with physical disabilitie

Woodbine House has donated copies of these books to the Federation, which you can borrow by calling 617-236-7210. Learn more about the Special Needs Collection at www.woodbinehouse.com.