Children With Facial Difference: A Parents' Guide - Softcover

Charkins, Hope

Softcover

ISBN 10: 0933149611 ISBN 13: 9780933149618

Publisher: Woodbine House, 1996

Synopsis

Each year, thousands of children are born with facial difference-abnormalities of the bones and tissues of the head and face that are present at birth or appear a few years later. Some conditions occur more commonly, such as cleft lip and cleft palate, while others, such as hemifacial microsomia, Treacher Collins, Apert, and Crouzon syndromes, are rarer. In addition to the emotional hardship of a different appearance and the attached stigma, some of these conditions pose special health concerns.

A resource that parents can turn to for help is Children with Facial Difference, the first comprehensive book to provide parents with up-to-date information and support.

Children with Facial Difference helps parents understand and cope with the challenges presented by their child's condition: Diagnosis; Causes and the genetic likelihood of recurrence; Emotional adjustment; Medical concerns and multi-disciplinary treatment approaches; Self-esteem; Family and community life; Speech, language, and hearing needs; Education; and Insurance issues, legal rights, and advocacy.

Each chapter of Children with Facial Difference includes parent statements, reassuring and useful bits of information and insights from parents of children with facial difference. These statements help alleviate feelings of isolation and provide comfort and support. With a foreword by Joseph E. Murray, M.D., a Nobel Prize winner in medicine and a pioneer in craniofacial surgery, this book also includes a glossary of terms, a reading list, a resource list of organizations, and an index.

About this title

From the Publisher

A Review...

Review of Children with Facial Differences

"In Children with Facial Difference: A Parent's Guide, Hope Charkins provides parents with a long-awaited resource for information and support. As a medical social worker, parent of a child with Treacher Collins syndrome, and founder and executive director of the Treacher Collins Foundation. Ms. Charkins uses her experience to anticipate the needs of parents during their child's infancy and childhood. In the first five chapters, Charkins alternates between providing parents with medical information and describing stages of psychological and emotional adjustment within the child and family. In later chapters, she suggests ways that parents can advocate for their children's needs within the educational, health insurance, and legal systems. Many chapters begin with a vignette from Ms.Charkins own parenting experience or, alternatively, a general description about what parents may be "going through" as it relates to the chapter topic. Similarly, each chapter ends with several pages of "Parent Statements" In the form of brief bullet statements quoting parents' reflections on their positive and negative experiences. The book also includes a glossary, reading list, and resource guide.

Chapter 1, "What is Facial Difference?" opens with the initial questions common to many parents, such as "Why does my child have a facial difference?" Next, the chapter presents brief descriptions of the various craniofacial disorders and syndromes. Chapter 1 also introduces the disciplines involved in craniofacial team care and issues parents a list of "considerations" when choosing a team, including the team's experience with their child's diagnosis and the team's affiliations with universities and other institutions.

Chapter 2, "Adjusting to your Child's Difference," describes the initial process of emotional and psychological adjustment experienced by parents and family members. The stages of coping with the initial shock of having a child born with a facial difference are the same as those involved in grieving a death: denial, sadness, anger, anxiety, guilt, adaptation, and reorganization. Specific suggestions for coping include speaking with other parents of children with facial difference, seeking information, and keeping a sense of humor and perspective.

Chapter 3 "Medical Concerns, Treatments and Professionals," discusses anesthesia, breathing problems, dental care, nutrition, hearing vision, syndactyly, and plastic surgery. The chapter also gives guidelines for coping with hospitalizations, parental self-care, and working with the craniofacial team. This chapter includes a table of "Questions Parent/Patients may want to ask Professionals," listing 29 questions about diagnosis, treatment planning, and counseling.

Chapter 4, "Self-Esteem, Family Life, and Strangers," draws from the work of Francis Macgregor that acknowledges the challenging nature of social interactions and effective and ineffective ways of coping. Specific suggestions for responding to teasing, curiosity, and ignorance about facial differences are offered, as are ideas for facilitating healthy self-esteem. Charkins describes stresses placed on the marital and family relationships and suggests seeking professional help when families feel overwhelmed and have trouble coping with stress.

Chapter 5, "Speech, Language and Hearing Needs," describes various types of hearing loss and surgical and nonsurgical treatments for hearing loss. Several pages are devoted to illustrations and explanations of types of hearing aids and auditory trainers. Speech problems and speech therapy topics are covered in last third of the chapter.

Chapter 6, "Your Child's Education," is written by David M. Drazin, Ph.D. who is a clinical psychologist specializing in school consultation and president of the Treacher Collins Foundation. Drazin discusses the roles of various educational staff (e.g. occupational therapists, learning disorders specialists, and school psychologists) and how to request accommodations in the classroom for hearing impairment or absences due to medical and surgery appointments.

Chapter 7 and 8, "Legal Rights and Health Insurance" and "Advocacy," inform parents about federal laws pertaining to education, rehabilitation, disability, and family and medical leave. Government benefits are also reviewed with an eye to eligibility and exclusionary information as it pertains to children with craniofacial anomalies, finally, advocacy for individual cases and class advocacy for the rights of all children with facial differences is lauded.

Ms. Charkins maintains a hopeful, positive, and energetic tone throughout the book. She quotes psychologist Tom Pruzinsky's statement that "disfigurement does not define the person." She strikes a nice balance between normalizing many parental concerns and acknowledging the unique challenges and stresses parents must face. She exhorts parents to seek information, be advocates for their children, and maintain a high level of involvement in all phases of the treatment process. While this represents the ideal, at times it seems a bit overwhelming, and some parents may feel that doing less than what is suggested may reflect poorly on them or their child's care. Charkins also presumes that access to team care is readily available, to the point of suggesting that parents visit different teams before "selecting" one that best fits their needs. Again, while this is ideal, it does not represent many parents' situations. The book would benefit from making suggestions to parents whose access to team care may be limited by geographic location or family resources.

Children with Facial Difference is a valuable resource for parents. Its inclusion in the popular Woodbine House series of parents' guides will increase public awareness of craniofacial anomalies. The book's organization and style, with its clearly marked headings, short paragraphs, and easy-to-read narrative, lends itself to either cover-to-cover reading or to use on an as needed basis. Ms. Charkins does a credible job of presenting information and defining terminology across the multiple disciplines represented in craniofacial team care. Interspersed with this, she guides parents through the emotional and psychological processes that are so much a part of the first several years of family life with a child born with a craniofacial anomaly. In short, craniofacial care providers should expect to see parents come in to clinic with this book, probably dog-eared and worn, in tow." --Cleft Palate-Craniofacial Journal, July 1998

About the Author

Hope Charkins holds a master's degree in social work from San Diego State University. She works as a medical social worker for the Vermont Department of Health, Division for Children with Special Needs. Along with her husband, she founded the Treacher Collins Foundation and now serves as its executive director. She has two children, one of whom has Treacher Collins syndrome.

Edition details

• Publisher: Woodbine House
• Publication date: 1996
• ISBN 10: 0933149611
• ISBN 13: 9780933149618
• Binding: Paperback
• Language: English
• Number of pages: 361