A Parent's Guide to Down Syndrome: Toward a Brighter Future, by Siegfried M. Pueschel, Baltimore, MD, Paul H. Brookes Publishing Co., 2001, 338 pp, $21.95.
This is a revised and expanded form of the popular 1990 book by Dr. Pueschel, who is an international authority in the field of Down syndrome. What makes this book unique among books that are written by professionals for parents and families is the fact that Dr. Pueschel has enlisted the collaboration of experts from a variety of disciplines in both research and practice, some of whom are also parents of children with Down syndrome. They bring to their writing a professional as well as personal imprint that is illuminating and poignant at the same time.
The book reads very easily for both parents and professionals, though for the latter, it may be too simplistic to be considered a comprehensive resource. However, the introduction advises the reader that this was not written as a textbook, and the book does provide good references for further readings, which are well organized at the conclusion of each chapter.
The book begins with a journey through the history of Down syndrome and proceeds in chronological sequence across the lifespan: from preconception through birth, then through the stages of childhood, and into the adulthood of an individual with Down syndrome. This contributes to its clarity and avoids the pitfall of apportioning the child into a conglomerate of systems, organs, and pathologies to be discussed. The book vibrates with a positive attitude, while, at the same time, it recognizes the trials and tribulations of parents and families engaged in rearing a child with Down syndrome.
I found the references and information fairly up to date and the medical sections, which were written by Dr. Pueschel, are substantial, yet not so technical as to be intimidating for families. Dr. Pueschel has highlighted the genetic, physical, and medical issues and even touched on the alternative therapies that have been proposed, providing a good framework for families to approach the latter. Photographs of children with Down syndrome are peppered throughout the book to provide visual reminders of the children one is reading about. An important facet is the emphasis made on the growth and development of the children, contrasting them with other "normally developing" peers. Milestones and growth charts are included, and these provide a helpful reference for families. A significant portion of the book is appropriately dedicated to developmental issues and also provides practical and invaluable suggestions for families for stimulating gross motor, fine motor, play, and communication skills in the children. The information in this section can be extensive but has been succinctly presented, again in chronological order so as to be easily understood.
The journey through the preschool, school, and adolescent years yields exemplary suggestions about the approaches that families and professionals working with these children could follow to provide a rich and satisfying educational milieu for them. I found this section particularly helpful for educators, with sterling examples of functional task analysis, breaking down each activity into its basic components. The authors provide information about innovative services and programs, while highlighting examples of curricula and suggestions for individual education plans (IEPs). Recreation and vocational options in the community, including supported employment, are also discussed. What is stressed is that individuals with Down syndrome are unique among, and yet very similar to, their peers. It helps demystify the preconceived notions about Down syndrome that still exist for many people.
The final chapters are by far the most provocative, where the contributors point out the reality that the parenting of an individual with Down syndrome must include the process that enables the individual to separate from the family, much like other young adults. Finally, the section on biomedical research gives a glimpse into the avenues that research is pursuing presently to ensure a "brighter future" for individuals with Down syndrome.
I found the book to be very informative, enjoyable, and lucid, providing both parents and professionals with an invaluable resource to gain insight into the lives of families and individuals with Down syndrome.
Neelkamal Soares, M.D.
Linda Grossman, M.D.
Developmental-Behavioral Pediatrics; University of Maryland; Baltimore, Maryland