Children with Facial Difference: A Parents' Guide

Families caring for children with cranio-facial anomalies have informational needs about their child's condition and care that is not easily obtainable or user-friendly. The book, Children with Facial Difference: A Parents' Guide, is intended to address these information needs by discussing various cranio-facial anomalies, their treatment, and strategies to promote positive coping. The author, a medical social worker and parent of a child with Treacher Collins Syndrome, has written a sensitive book filled with practical advice for parents as they navigate the medical system and larger social systems in light of their child's special needs and differences. A distinguished advisory committee assisted with editing.

The first chapter describes the manifestations of common conditions, such as cleft lip and palate, as well as less common disorders, such as various multiple suture craniostenoses, hemifacial microsomia, and Treacher Collins Syndrome. The causes of these disorders, both genetic and environmental are explained comprehensively in nontechnical language. The chapter offers anticipatory guidance in working with an interdisciplinary treatment teach and the need for an early and comprehensive evaluation of the child's condition. The chapter and others could be strengthened by including captions for the pictures that illustrate the text.

Subsequent chapters address the following aspects of care:

• Family adjustment and support needs
• Treatment, including hospitalization and surgery, and interacting with health-care providers
• Family life, including coping with stressors and crises and helping affected children form a health self-concept within the family and society
• Special speech, language, and hearing needs, their diagnosis and treatment
• Adapting to school, available support services, and interactions with educators
• Types of advocacy, the advocacy process, and helpful organizations.

Anecdotes and comments by parents at the end of each chapter offer additional support and insight. The book concludes with three very fine appendices that consist of a glossary, additional reading and audiovisual materials, and a compilation of national resources for families of children with facial difference.

This book is a supportive resource for parents and health care providers and would be an excellent addition to consumer libraries. Using a readability index, I calculated the reading level to be 11th grade, which makes this resource most valuable for consumers who can easily read. Consumers who are more comfortable reading at lower grade levels may find the material more difficult to comprehend and may need assistance from health-care providers in using this resource.

• Children with Facial Difference: A Parents' Guide
• Author: Hope Charkins, MSW
• Publisher: Woodbine House, Inc., Bethesda, MD
• Date: 1996; Price: $16.95
• IBSN: 0-933149-61-1

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