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New Book Helps Siblings of Those with Down Syndrome
“Fasten Your Seatbelt” is a compilation of the most common questions posed over the years in brother-and-sister workshops. 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.
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?”
The new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, 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. 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.
“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.
REHACARE.de; Source: Children's Hospital Boston
- More about the Children's Hospital Boston at: www.childrenshospital.org