Tourette Syndrome Awareness Month is particularly important time for me, because my hero lives with Tourette Syndrome every day – my oldest son.
Tourette Syndrome, commonly known as Tourette’s, is a neurological disorder that’s often misunderstood. Tourette’s involves uncontrollable motor and vocal tics – repeated eye-blinking or shoulder-shrugging, constant throat-clearing or forced coughing, just to name a few. In extreme (but rare) cases often highlighted in media reports, motor tics can be physically harmful, and vocal tics can be obscene. Thankfully, my son is not one of those rare cases.
More than 200,000 Americans live with Tourette’s, most of whom are boys between the ages of 5 and 17. Treatment includes medication and/or psychological therapies, but a cure has yet to be found. The good people at the Tourette Association of America have been funding research efforts for 40+ years, and I hope to see a cure discovered one day soon. Please consider supporting them.
But back to my son.
We often apply the term ‘hero’ loosely. To many, heroes are famous athletes, movie stars, or – at least in previous generations – elected officials. But mine is not someone I admire from afar … I have the honor of watching him grow up every day.
I don’t know about you, but when I was a teenager, all I wanted to do was fit in. Whether that meant wearing the “right” clothes or listening to the “right” music, I didn’t want to be stared at, laughed at or criticized for being different. I’m a natural introvert, and although I can ‘turn on a switch’ at work every day, I’m still painfully shy in most social situations and often avoid them for fear of not being accepted. In my personal life, I prefer to go unnoticed and unknown (which explains my absence on social media).
It’s not something I’m proud of, and without inspiration from my son, I probably would never reveal those personal details online with my professional network. But my son is everything I wish I could be.
In many ways, my son is just like most kids. He likes Xbox, swimming, rollerblading, reading, texting, watching TV and playing with our dog. He’s smart, funny, outgoing and makes friends easily. But living with Tourette’s doesn’t let you fully blend in. The more you try to hide your tics, the more obvious they become.
So rather than try to fight an unwinnable battle by repressing his tics, my son accepts them. They’re part of him … but they don’t define him. In fact, the only time I’ve ever heard him complain was years ago as a little boy. He was upset that he always had to be the “seeker” when playing hide-and-seek, because his tics made him easy to find.
Ever since elementary school, my son approaches his teachers early in each school year to ask permission to address the students in his new classes about Tourette’s. He stands up in front of the class and explains what Tourette’s is and what it isn’t. He tells his classmates that he doesn’t want to tic, but he can’t help doing so. He pokes fun at himself and apologizes in advance if his loud throat-clearing and coughing annoys anyone. He explains it’s not contagious and says he’s just a normal kid like everyone else. He may be only 14, but he has a maturity well beyond his years.
Even today, as a grown man in my mid-40s, the thought of me doing that is terrifying. I admire my son’s courage, his self-confidence and his comfort in his own skin. He’s a much stronger person than I am, and I wish I could be more like him. And isn’t that what a hero should be?
My son isn’t just a kid with Tourette’s. He’s my hero. And as we raise Tourette Syndrome Awareness I wanted you to know him.
