A new book for the brothers and sisters of people with Down syndrome
“What causes Down syndrome?” “Why do people stare at my sister in public?” “How do you deal with people who use the word ‘retard’?” “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), answers these questions and more. Aaccessible to kids 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).
The book tries to fill in a long-standing gap: Resources and support services are geared toward parents, not siblings, say Skotko and Levine.“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.”
Not long ago, I got off a plane in Phoenix and confronted the words “Ted is Here,” painted on a pillar in bright orange. I almost cried. Ted, I realized, was the name of a budget airline. But it was also my older brother’s name.
My Ted died of an immune disorder 27 years ago, when I was 14 and he was 17. His story, along with that of another boy in Texas, were merged in the movie “The Boy in the Plastic Bubble.” (Which my family did not authorize.)
Like most people who’ve lost someone they love, I’ve always wanted him back, or at least present, in some way. As a kid, I wished for a spectral sighting. As a young adult, I sought out psychics and mediums, one of whom once instructed me to ask Ted to give me signs that he was still present. Once, I asked Ted to show me a clown. Two days later, at a coffee shop, I looked up and realized I was sitting under a clown mural. My elation was short-lived, however. Had Ted contrived it, or had I unconsciously found myself a clown?
I’m not making a case for the supernatural here. But seeing that “Ted is Here” sign gave me the old I-see-the-clown feeling again.
This blog, which I’m launching on May 27th, the anniversary of Ted’s death, is an invitation to those who knew him—and those who didn’t—to share their thoughts and memories about the Ted they knew, or the Ted they imagined. Hearing about him, knowing that others are carrying a bit of him around with them, is another way of keeping him present. Honestly, I’d like that much better than seeing a clown.
I’ll also be posting thoughts and commentaries on siblings, sibling loss, families and grief—subjects I have, not surprisingly, become interested in. And for those of you who’ve read my book, The Empty Room, which tells my story and those of others who’ve lost siblings, I welcome your thoughts and messages.