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What I Wish People Knew About Having a Sibling With Down Syndrome

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As someone who has a brother with Down syndrome, I’ve recently realized there is the “sibling” way of looking at people with special needs, the “I-don’t-know anything” way of looking at people with special needs and the “I-think-I’m-an-expert” way of looking at people with special needs. 

Because I’m part of that first category, I feel it’s my job to help those around me better understand how to act toward those with special needs, specifically Down syndrome.

My brother, Chaim, has lived the last 10 years of his life surrounded by a family who has value, love and sincere acceptance for him. Chaim is and always will be a much-needed piece of the puzzle that connects my family with a strong bond. He is valued as a person who has a love for sports, music and learning. In my parents’ household, we grew up defining Chaim as someone who has amazing abilities rather than disabilities.

Many times, people who don’t know anything about those with special needs will give a pity nod, stare insensitively, completely ignore or talk down to my brother. They don’t know or plan to know what Chaim has to offer. All these people would be surprised if they knew Chaim is in an included classroom, plays on a typical football team and knows how to play ice hockey. They don’t know because they believe Chaim is just a “Down syndrome boy,” and they don’t give him a chance to show who he really is. He’s a boy who has Down syndrome — a boy who has many other interests, abilities and has Down syndrome. These are the people I wish could join my family when we all sit around the dinner table and listen to Chaim read a chapter from his book or hear him sing old Frank Sinatra songs while I play the piano. These are the people who need to give my brother the acceptance and value he deserves.

I’ve spoken to many people in the “I-think-I-am-an-expert” category of looking at people with special needs, and I’ve concluded these people are almost correct but missing something. A lot of these people know how to discipline, physically take care of and love people with special needs. But they need to acknowledge that Chaim is a person first. He’s not a burden to anyone in my family or in the world. He’s not just someone to take care of — he is someone to learn from. No one should feel bad for Chaim, nor should they feel pity for my family because to us, he is a crucial asset to our lives.

It’s easy to dismiss all of this and say, “Of course she feels this way, she’s a sibling!” And while this is true, it hurts me to see how there are still those who know nothing and do not care to know anything about people with special needs. It hurts me when “experts” forget that people with special needs have abilities and are not burdens.

As a sibling of someone with Down syndrome, I wish people knew how fortunate I am to have Chaim as my brother, because I cannot imagine my life without him.

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Originally published: October 23, 2015
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