Teaching Children With Down Syndrome About Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals

Teaching Children With Down Syndrome About Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven, Bethesda, MD, Woodbine House, 2007, 331 pp, Paperback, $24.95. For those of us who are not so fortunate as to have a sexuality educator with the knowledge and wisdom of this author, Terri Couwenhoven has done a great kindness in making her expertise and experience available to all of us with this rich and readable book. Ms. Couwenhoven has filled this book with copious information from her background as a certified sexuality educator and has used her personal familiarity with these issues, as a parent of a young woman with Down syndrome, to make this book enjoyable to read and accessible to parents. The book is thorough, addressing a broad range of topics, from how to teach children and youth with developmental disabilities such concepts as anatomy, privacy, puberty, masturbation, social and emotional development, dating, and formation of committed partnerships. There is an excellent chapter on Exploitation Prevention, which of course is important. And I am pleased to see that this chapter was placed last, following other chapters on Touch and Affection and Social Skills for Healthy Relationships. There is even information about homosexuality and transgender issues in the book. This section is brief, but Ms. Couwenhoven gives suggestions on how to obtain more information in this area, which is greatly appreciated, as I find this topic is often neglected in resources on sexuality in youth with developmental disabilities. The format of the book is brilliant. The main text itself is well written and easy to read. To make the book even more practical and enjoyable for parents, boxes are interspersed through the text, which include additional information on specific topics, real-life anecdotes from families, suggestions for specific activities that parents can try with their children, and concise summaries of the previous information. The anecdotes and photos of real people make the book very human and accessible, whereas the summary tables and activities make the book eminently practical. Included in the back of the book are appendices for parents to use in teaching sessions with their children, including worksheets and anatomical drawings. (The drawings are very good and appropriately detailed for curious children, making this book very difficult to review on an airplane without getting funny looks from my fellow passengers.) As you can tell by now, I really like this book. However, I would not be doing my part as a book reviewer without offering some constructive criticism. So, here goes. I regret that the book has Down syndrome in the title. It is an excellent resource for parents of children with Down syndrome. Of course, Ms. Couwenhoven’s own experience is that of a mother of a young woman with Down syndrome. However, this book is also an excellent resource for parents with children with other developmental disabilities, including autism and intellectual disability. Ms. Couwenhoven does an excellent job of being inclusive in the text, explicitly stating that this book can be used by parents of children who do not have Down syndrome. My concern is that with “Down syndrome” in the title, the book will be ignored by parents who could really benefit from it. Since reading this book, I have been recommending this book broadly to the parents of my patients with and without Down syndrome, explaining that one does not have to have Down syndrome to benefit from this excellent book. I now frequently recommend this book to the parents of my patients. I strongly recommend that all professionals who work with children, adolescents, and adults with developmental disabilities buy a copy, read it (better on the ground than on an airplane), and keep it on their book-shelf for their own reference and to share with families. Randall A. Phelps, MD, PhD Child Development and Rehabilitation Center Oregon Health and Science University Eugene, OR