Review of Children with Cerebral Palsy, 2nd edition
"This second edition of Children with Cerebral Palsy: A Parents Guide, edited by Elaine Geralis, should be in the hands of every parent who has a young child with cerebral palsy (CP). In addition, the book should be read by every professional who works with young children who have cerebral palsy and their families.
The reasons for this are many, beginning with the way the book is organized. Chapters are written by professionals whose long experience in working with young children with CP and their families is quickly evident. In addition to their professional qualifications, some of these contributors are the parent of a child with CP and share their experiences.
Another valuable feature of the organization is at the end of each chapter. Short statements from a number of parents relate to the topic that has just been discussed. These are honest statements, running the gamut from bewilderment, anger and frustration to acceptance, hope and joy.
Another valuable feature of the book is the care that is taken in defining and explaining all of the terms and jargon that parents will encounter. The authors realize these words that will become a standard part of parents' vocabulary are at first almost foreign. Thus, throughout the book, care is taken to define words such as muscle tone, contracture, oral-tactile defensiveness, receptive language and expressive language. These and many other terms are defined in layman's terms.
In addition, a glossary of terms is included at the back of the book. What will parents learn from this book? Many things. First, they will gain what every parent of a child who is newly diagnosed with CP needs and craves-knowledge . The first chapter presents solid, factual knowledge regarding the condition of cerebral palsy: what it is, what causes it, and other conditions often seen in association with CP.
Next is a chapter on daily care written by an occupational therapist. What makes this chapter so valuable for parents is its emphasis on the practical. For example, it informs them how to carry a child and how to position the child in reclining and sitting positions.
Short descriptions are given of many special equipment items that may be needed. Suggestions for the essential activities of eating, bathing, dressing, playing and sleeping are provided. These are the immediate, everyday concerns of parents, and they are addressed in a manner that parents should find very helpful.
'Do not take any suggestions that will only make more work for you,' the author states. What a wonderful and necessary thing for parents of children with CP to hear!
Other chapters provide similar types of useful, practical information on topics such as developmental issues and milestones; speech, physical and occupational therapies; and early interventions and preschool programs. Also addressed are legal issues, such as the laws governing the education of children with handicaps, the Americans with Disabilities Act (ADA), government benefits (SSI and, SSDD), and health and life insurance issues.
In addition to these chapters, which provide a wealth of practical information for parents, there are chapters that address issues such as the range of emotions often experienced by parents and other family members, assistance to help the child with CP develop self-esteem, and other issues surrounding everyday family life. Again, very practical matters are discussed, such as emphasizing that parents take time for themselves, reminding parents to allow all family members to be individuals and deal with their emotions in their own way and at their own pace, and advising parents not to allow all family life to revolve around the child with CP.
The final chapter explains and illustrates advocacy from a parent's perspective. Explaining what advocacy is and how it can be practiced, even in small ways, can add to the feelings of hopefulness and determination likely to have been generated by the reading of previous chapters.
Appendices include a list of recommended readings, a list of suppliers of special equipment, and a resource guide of organizations.
Taken all together, the information included in this book is just what parents of children who are newly diagnosed with CP need and should have. The book is a blend of factual information and practical suggestions presented in an easy-to-read style. Parents and their children are acknowledged as unique, complex individuals rather than as one large homogenous group that is expected to move step by step in unison After reading this book, parents will no longer feel quite so alone.
Speech-language pathologists and other professionals will learn a great deal from this book as well. Most importantly, it will provide professionals with an honest look at the myriad issues that parents of their young clients must face and address.
The book will remind professionals of several things, including the vast amount of new information that parents are expected to assimilate in a short period of time and the fact that life cannot and should not revolve around therapy, Reading the personal reflections should help to convey to or remind professionals what life with a young child who has CP is really like.
For both parents and professionals, what sets this book apart from many others is its tone. This is an honest book-honest in the factual information it presents; honest in acknowledging all members of the family. Honest in not advocating pity, either for the child or for the parents; and honest in conveying to parents that they do not need to become superhumans. The result is a book to be highly recommended." ----ADVANCE for Speech-Language Pathologists & Audiologists, April 12, 1999