New Book Helps Siblings of Those with Down Syndrome Navigate Questions Concerns and Fears

Based on Thousands of Conversations, Paperback Tackles Top Questions Posed by Teenage Brothers and Sisters

February 26, 2009

Boston, Mass. -- Brothers and sisters of people with Down syndrome will have to face questions about the genetic condition throughout their lives, ranging from "What causes Down syndrome?" to "Why do people stare at my sister in public?" "How do you deal with people who use the word 'retard'?" and "Where will my brother live when he gets older?" A new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters (Woodbine House, February 2009), tackles these and dozens more top medical and personal questions about Down syndrome in an easy-to-understand, fast-paced, question-and-answer format.

Geared toward teenagers, although accessible to siblings as young as 11, the questions in the book are based on brother-and-sister workshops led by its co-authors Brian Skotko, MD, MPP, a physician at Children's Hospital Boston whose sister has Down syndrome, and Susan Levine, a social worker with Family Resource Associates, Inc. (Shrewsbury, NJ). For the past ten years, Skotko and Levine have conducted workshops for brothers and sisters of people with Down syndrome and in their combined 34 years experience have met more than 3,300 siblings.

"Over the years, support networks and resources have been developed for parents of children with Down syndrome, but what is often overlooked is that siblings need access to information and support structures, too," said Skotko. "Oftentimes, siblings exist in emotional isolation - they have so many questions about Down syndrome and the feelings they are experiencing toward their brother or sister. They frequently wonder whether it's okay to feel not only love and joy toward their sibling but also frustration and embarrassment, at times."

As part of their workshops, Skotko and Levine have asked brothers and sisters to write anonymous questions on index cards - a burning question they don't feel comfortable asking to their parents or the group. After they are collected, the cards are randomly drawn from a box and the questions are shared and answered based on the authors' professional and personal experience.

"What we've learned from the index card exercise is that by voicing teens' emotions - their excitements, questions and frustrations with their siblings with Down syndrome - invariably there are 'ah ha!' moments when they look at each other and say, 'Your brother/sister does that, too?'" Levine commented.

"Once they have a way to voice their questions and see that their experiences are shared by others, their emotions become validated and the experiences they are going through are standardized. In this we see a sense of comfort, acknowledgement and gratitude," Skotko said. "With the publication of Fasten Your Seatbelt, we hope to share the feedback we've gotten with many more brothers and sisters around the country and help them find the answers to the questions they have now, or the questions they're just starting to formulate."

Skotko, a resident physician at Children's, has dedicated his professional career and research to children with cognitive and development disabilities and their families. His research focuses on how physicians deliver a diagnosis of Down syndrome to new and expectant parents, pre- and postnatal support, and what it's like for families to have a child/brother/sister with Down syndrome.

Fasten Your Seatbelt is a compilation of the most common questions posed over the years to Skotko and Levine. Written for teens, it is a resource that children and adults of all ages will find useful as they navigate their relationships with people with Down syndrome. The book will be available on the Amazon and Barnes and Noble Web sites and in select Barnes & Noble stores in mid-March.

Keri Stedman

Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, 11 members of the Institute of Medicine and 13 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 397-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about the hospital and its research visit: