By Patricia E. Bauer
Kids whose brothers and sisters have Down syndrome — or any disability, for that matter — often find themselves interpreting their sibling to the world.
Yet how much do they really know about their brother or sister’s condition? And how do they cope with the personal questions, unwanted stares, and complicated emotions that often seem to go with the territory?
Co-authors Brian G. Skotko and Susan P. Levine have come up with some answers in their new book, “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.”
Skotko, a doctor at Children’s Hospital Boston whose sister has Down syndrome, and Levine, a social worker with Family Resource Associates Inc. in New Jersey, have been conducting workshops for brothers and sisters of people with Down syndrome for the past ten years. Along the way, they’ve been collecting siblings’ thorniest questions and developing thoughtful and knowledgeable answers for them.
The result is this book, which provides a wealth of helpful information in a handy Q&A format. It’s geared toward kids 11 and up, but also provides some useful insights for adult siblings, parents, and even younger kids who might read along with their parents.
Here in the same Q&A format, Brian and Sue tell us a little about their book and what they hope to accomplish with it.
Q: What’s the takeaway message you’d like siblings to get from this book?
SUE LEVINE: Any feeling a child feels toward his or her brother or sister with Down syndrome is valid, even the more difficult emotions. Additionally, “knowledge is power.” Having accurate information on Down syndrome, and understanding choices in difficult situations can help siblings educate others and move past their more challenging moments.
Q: (For Brian) When you were a kid, what was your biggest worry about growing up with a sister with Down syndrome? Where did you go to get answers to your questions?
BRIAN SKOTKO: Unfortunately, I realized at a very young age – like most brothers and sisters do – that our societies are not often as accepting as they should be. In fact, people can sometimes be inconsiderate, rude and even cruel. When I witnessed someone being anything short of respectful to my sister, I frequently took on a protective role.
One of my biggest worries was that my sister with Down syndrome might not be able to defend herself. So, I often sought help and advice from my parents; but, more often, I simply tried different strategies on my own. I soon learned, however, that my sister could defend herself and had developed her own strategies in dealing with those who didn’t believe in her potential.
Q: What are some of the questions you answer?
BRIAN SKOTKO: Our nearly 100 questions cover medical matters (“If I have children one day, will they have Down syndrome?”), educational programs (“What is IDEA and an IEP?”), family issues (“Why does it seem like there are two sets of rules at our house – one for me and one for my sister with Down syndrome?”), uncomfortable moments (“Why do people stare at my sister in public?”), authentic feelings (“Sometimes I feel guilty that I can do things my brother can’t do. Is that normal?”), and future worries (“Will my brother be able to live on his own when he is an adult?”).
Q: What’s the question you’ve gotten most often from siblings of people with Down syndrome, and how did you answer it?
SUE LEVINE: Children are very curious about exactly what causes Down syndrome. They also ask questions to try to understand their sibling’s learning challenges and possible capabilities as an adult. Additionally, brothers and sisters frequently ask about the reactions of others: “Why do people stare?” and “Why do people make fun of others with disabilities?” They are looking for solutions to these uncomfortable problems.
Q: What’s the biggest challenge facing kids whose siblings have Down syndrome?
SUE LEVINE: Brothers and sisters have a need to understand Down syndrome and what it means for their sibling. Parents can help this process by explaining Down syndrome as early as possible, and being there to answer questions whenever the child has one. Siblings are aware of the reactions of others to their brother or sister, and they often struggle at times with how to respond.
As Brian is fond of saying, whether they want to or not, siblings find themselves in the position of being an advocate at some time in their lives. This can mean explaining Down syndrome to another child on the playground, standing up for someone with learning challenges who is being teased, or choosing to help out at Special Olympics.
Q: What are some common misconceptions about people with Down syndrome?
BRIAN SKOTKO: While our communities have many misunderstandings about the potential of people with Down syndrome, we have learned that so, too, do many brothers and sisters. Younger siblings sometimes need to be told that Down syndrome is not contagious, and older sisters might be interested to know that their own chances of having a child with Down syndrome are no different than anyone else’s if their sibling has trisomy 21 or mosaicism.
Some siblings are surprised to learn that some people with Down syndrome graduate from high school, attend postsecondary educational opportunities, drive, live on their own, and even get married. But, what most brothers and sisters eventually learn is the fact that their brother or sister – no matter what skills or talents they might have – brings extraordinary richness to their family and the surrounding community.
Q: What does research tell us about siblings of people with disabilities? With Down syndrome?
BRIAN SKOTKO: While research on siblings who have brothers and sisters with Down syndrome has been slim, the results all tend to show that the positive aspects far outweigh any negative consequences. When matched for age, birth order, gender, and socioeconomic status, siblings who have brothers and sisters with Down syndrome tend to be rated by their parents and teachers as more kind, empathetic and less prone to behavioral problems when compared to siblings who do not have brothers and sisters with Down syndrome.
It is difficult to say whether these advantages extend to siblings who have brothers and sisters with other types of disabilities. More research is definitely needed.
Q: Can the lessons you learned be applied to people who live or work with people with other kinds of disabilities?
SUE LEVINE: Absolutely. So many of the questions and answers in this book apply to issues siblings face with a brother or sister with any disability. All siblings need to know that their questions and feelings are valid. All siblings benefit from knowing that they are not the only ones living in a different kind of family. Except for the questions directly linked to facts about Down syndrome, the answers in this book apply to many brothers and sisters.
Q: Where can siblings go to get support?
SUE LEVINE: Sibling support programs are often available through Down syndrome organizations such as the National Down Syndrome Congress or the National Down Syndrome Society. State or local support groups sometimes run a special program. Agencies such as the ARC, local hospitals or organizations working with individuals with disabilities are also a good place to start. Sibling newsletters are also available for download though the non-profit agency I work for. Siblings can visit the website at www.frainc.org and click on “newsletters.”
Q: As you know, it’s now standard procedure for pregnant women to be offered prenatal testing for Down syndrome, and research has shown that the vast majority who get a diagnosis will terminate their pregnancy. Do you think your book might prove to be a good resource for pregnant women considering testing, or those who have gotten a prenatal diagnosis of Down syndrome?
BRIAN SKOTKO: One of the questions that pregnant women frequently ask after learning about a prenatal diagnosis of Down syndrome is, “What does this mean for my family?” Research has demonstrated that brothers and sisters are advantaged in many ways when they have a sibling with Down syndrome. I hope our book will further show prenatal couples that brothers and sisters ask thoughtful, mature questions, and that there are many resources available to help them along their own journeys.
Q: (For Brian) How is your sister doing, and what does she think about your book?
BRIAN SKOTKO: Once again, my sister thinks she is a superstar (and rightly so!) In many ways, this is her book, as she informed so many of my answers. She continues to live a full and robust life complete with multiple jobs, social engagements, and a firm devotion to American Idol and Dancing with the Stars.