The mother of a child with Down syndrome once told my parents, “People take their cue from you. Treat him different and others will, too.”
At age 5, I was too young to understand the enormity of what my parents were dealing with when they brought my baby brother home from the hospital in the spring of 1986. My mom remembers me telling her that my heart hurt. I am certain I was taking my cue from others. I probably saw the pain in their eyes or the worry on their faces. I don’t remember saying it and certainly don’t remember feeling that way when the sibling I’d been praying for finally arrived!
My parents often talk about the way I was able to get him to do things that no one — not his physical therapist, not his speech therapist, not his teachers — could get him to do. A part of me thinks he knew not to mess with a bossy older sister. But the truth is, he’s been a fighter since he was born, and I’ve been determined to see him succeed so we made a good pair.
We’d practice tummy time in front of the Royals game. I’d sit him up on the driveway as I rode my bike in circles around him. I encouraged his first steps and rushed to pick him up when he fell.
We grew up in a small town. People were kind. You got to know your neighbors. He was always just “one of the kids.” If anyone ever saw my brother as different, they didn’t mention it.
Things changed when we moved. A girl in my new class asked, “Do you ever wish your brother were normal?”
Normal? I had never even considered that he wasn’t normal. I knew he had Down syndrome and I knew that meant he had a different set of challenges than most of us. But normal? Such a tough question for a 9-year old to wrestle with.
So as it was, in a fourth grade classroom at John Glenn Elementary, I learned that people would take their cue from me. Others would treat him the way they saw me treat him. So I always supported him, always cheered for him, always helped him. When my friends and peers saw that, they followed suit. And my closest friends…well, they never seemed to notice that he was anything but one of us.
We were fortunate that our community and high school provided us many opportunities to get involved. We were both very active in student council. We were both involved in sports. We both helped decorate our class floats at homecoming. We both went to prom. And we both made a few stupid “teenage” mistakes along the way.
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You certainly know the essay called “Welcome to Holland” by Emily Perl Kingsley where the excitement for a vacation to Italy turns to disappointment when the plane lands in Holland. The metaphor is that the trip to Italy is a typical child-raising experience, while the trip to Holland is the experience of raising a child with special needs. In the end, you see that the “trip” is really worth it.
In college, I spent a semester traveling throughout Europe. So I’ve been to Italy. And I’ve been to Holland. And I can tell you that they are stunning in their own way. The landscapes. The architecture. The people. The food. They are different, but as they often say in the Down syndrome community, they are more like than different.
In June 2011, I left the U.S., passport in hand, for a 14-hour flight to Europe. This time I stepped foot off the plane to a country not mentioned in Kingsley’s essay. I landed in Greece. Athens, to be exact.
Home of Socrates and Plato. Home to the Parthenon. Home to the first recorded Olympic Games. And that summer, home to 7,000 athletes, 2,500 coaches, 3,000 officials, 25,000 volunteers and an estimated 40,000 families — including ours — as we watched my brother, a member of Team USA, compete in the Special Olympics Summer World Games.
If you’ve ever watched the Olympic Games on TV, you know the feeling of jumping up and down in your living room trying to help push a total stranger like Michael Phelps down the pool past his competition using your hands or lots of loud yelling. I can say that these Games were no different for me.
The thrill of seeing my brother’s training culminate on the world stage is indescribable. The camaraderie of the athletes and of the families was unlike anything I’d ever experienced. Though there may have been a language barrier when 185 countries descend on a foreign land — the one language that knows no barrier is a smile and there were plenty of those.
My brother was thrilled to attend the World Games. He worked so hard to get there. He wanted to make new friends, have a good time swimming and maybe set a few personal records. A medal would be nice, but we knew the competition would be intense so we concentrated on the incredible opportunity and focused less on possible outcomes.
I kept in touch with friends back home through email and Facebook. After he’d won two bronze medals and a silver medal, one of my friends sent a message that read, “I just want him to win a gold medal. It just doesn’t feel complete without the gold.” She continued to write Facebook posts about how she hoped he would win the gold. I’d reply with a speech similar to that of an Oscar-nominated actor: “We’ll be happy no matter what — it’s such an honor just to be here.”
I suddenly felt this extreme pressure — people back home were expecting so much from him. Didn’t they understand that we were already proud of him? That we were proud of the bronze and silver medals? And that’s when I realized it — others were dreaming and they were dreaming big for him. If they could, why couldn’t I?
That afternoon, I went to the pool determined to see my brother come home with a gold medal. Just minutes after I allowed myself to dream big, I watched him walk on to the highest podium to collect his gold medal.
My mom once said, “Give yourself permission to dream. And when you do — dream big.” Whether we’re dreaming for children with special needs or children without, dreaming about future opportunities that don’t yet exist or dreaming about a world where everyone is accepted as an equal, dream big.
Growing up, I always wanted to set an example for my brother. I wanted to pave the way so that when he followed five years later, things would be easier for him. Teachers would accept him. His classmates would want him on their team. And doors would magically open because I’d paved the way. What I didn’t know was that my brother would be the one setting the example for me.
Because of him, and the entire Down syndrome community, I make sure that way I treat him is the way I want others to treat him. Because of him, I’m an advocate. Because of him, I don’t give up. Because of him, I have one more stamp in my passport book. And because of him, I dream big.
So to the girl in Mrs. Thomas’s fourth grade, you should know that my brother has held steady employment for years. He’s in a committed relationship with a darling woman. He’s traveled around the world and has won countless medals on the golf course and in the pool. He has volunteered hundreds of hours helping train future Special Olympians. He’s had more speaking gigs than I can count. He’s a wonderful uncle who loves my kids something fierce. He has a witty sense of humor and has never met a movie or a meal that he didn’t like.
I don’t even know what “normal” is, but I’m so glad he’s not.