By Caurie Putnam
Somewhere in the narrow swath between Olympics and Special Olympics you will find an athlete named Brady. Not Tom Brady or Brady Quinn, but Brady Putnam—my Brady, age 8.
Brady was born with a rare genetic, neurological disorder called hyperekplexia. Hyperekplexia means “exaggerated surprise” and that is exactly what I received when Brady was born. Upon his first breath he went into a prolonged startle, froze and turned blue. It was the first of hundreds of startles Brady would have every day until he began seizure medication to subdue them.
Anything could make Brady startle—a breeze, eye contact, a barking dog, an errant hockey puck hit by his older brother Brice. It was startling. He was startling.
He was also beautiful and strong.
Despite his medications—typically fatigue inducing—he never seemed to tire. Though he hit all of his milestones late, when he hit them, it was with full force.
I secretly wondered if Brady was the son of mine who inherited not just the startle gene, but the Big Time gene. His grandfather had played minor league baseball, his great uncle was a PGA pro, and his distant cousin was a quarterback for the New York Jets—a member of the elite quarterback draft class of 1983.
Yet, when it came time to sign Brady up for Little League and Timbits Hockey, his other gene—the startle gene and the developmental delays that went with it—overpowered his natural athleticism.
I’ll never forget how excited he was to get on the ice for the first time in his padded armor with his first hockey stick. He made it through about ten minutes of practice until the cold sent him into a prolonged startle. “Just breathe baby,” I whispered as I took his sweaty helmet off.
“Me done with it,” Brady said later, of hockey. “Me done.”
Brady was crushed ice hockey was not for him—neither was soccer or swimming or gymnastics. Little League is currently on the chopping block. My boy who has hit at least a single every time at bat this season recently had a prolonged startle in the outfield and had to be removed from the game. “What’s wrong with Brady?” his teammates asked.
Brady, who is in an inclusion second grade classroom, has had some luck with adaptive sports—sports modified for children with medical or developmental challenges. He plays adaptive lacrosse, which he loves. The coaches are understanding of his startles, his speech disorder because of his startles, and his need for frequent breaks. Yet, when Brady is “all there” he dominates the net. Sometimes it seems unfair. He is so good.
He did therapeutic horseback riding for years, but he reached a point where walking in circles with a leader was not enough to satiate his love of competition. “Me want to jump barrels,” he said. “Me want to be a cowboy.”
Sometimes during adaptive sports clinics my blonde, lithe, muscular Brady is mistaken for a volunteer—a child from a local mainstream sports team helping out the “special” kids. If you evaluate Brady purely on the force of his throw, the power of his kick, or the speed of his run you would probably make the same mistake.
If you get down on one knee and ask Brady his address or where the nearest bathroom is, you will probably get a blank stare if you get eye contact at all.
I grapple with where Brady belongs. He is clearly an athlete, but what kind of athlete?
One weekend in June, the 2015 Summer Games of the New York State Special Olympics came to our small, college town of Brockport, NY. Brady has been eligible for the Special Olympics since he was a preschooler, but I never pursued it.
With the state games in our backyard, I decided to bring Brady and his brother Brice They were immediately intrigued and we spent most of the weekend watching everything from the opening ceremonies to the closing ceremonies and all sports in between.
There were 2,000 athletes at the games and hundreds of volunteers. At times, I had problems identifying who was who. I had wrongly assumed the Special Olympics were primarily for children with Down syndrome—which Brady, even though he has the distinctive almond eyes, does not have. I was wrong.
The games, it seemed, were for children like Brady. These kids were awesome athletes! Their shot put throws, their moves on the basketball court, their speed in the pool. I don’t know what the majority of their diagnoses are or what is on their IEPs, but their passion, athleticism, and determination was very clear.
Brady wanted a medal, which I explained to him he had to earn by competing.
He understood and I suggested we ask one of the athletes if we could take a photo of her medal instead. He liked that idea.
A very nice young lady agreed to let us photograph her gold medal for swimming, but with one caveat—she wanted her ribbon for 5th place in the photo too. Brady saw me framing the photo with my iPhone and noticed I purposefully did not have the 5th place ribbon in the frame. Did he really want a photo of a place ribbon?
“Mom,” he scolded, “get the ribbon too.”
Brady got it. He got it even before I did. The love of competition, the love of sport—what drove this young woman, what drives him too.
As we were leaving the closing ceremonies Brady said, “Mom, me want to do this. Me want to do the Special Olympics.” I exchanged a look with his sage older brother—the one who would never be content with a 5th place ribbon at an ice hockey tournament—and he nodded in support.
“When we get home Mommy will send an email to the Special Olympics and sign you up,” I said.
My starling beautiful boy smiled.
Caurie Putnam lives in Rochester, New York with her husband and two boys. She is a columnist for the Democrat and Chronicle, blogger for The Huffington Post and stringer for Reuters. Find her on Twitter @CauriePutnam.