Updated: July 20, 2017
Originally Published: Dec. 26, 2015
My child is like a puppet, with invisible strings reaching high into the sky. I’m not sure who’s pulling them, but the force is unkind. He bounces and twirls through life, occasionally stumbling or spilling his drink. Every time I witness him struggle, it feels like watching someone tumble down a flight of stairs—an agonizing sight that repeats daily.
Tourette Syndrome has taken the reins of my child’s body. I’m aware that things could be far worse, yet I still grieve for a life where he could glide through without teasing or curious glances. I often find myself prefacing new playdates with, “Just so you know, my son has Tourette’s.”
Despite this, there’s a thrill in witnessing his journey. He won’t have the luxury of anonymity, but this challenge will instill in him a remarkable sense of perseverance. He’ll invariably find himself in the spotlight, whether he likes it or not, fostering his leadership skills. This experience will help him master the intricate bond between his mind and body, rendering him more resilient than most.
His resilience astounds me. When faced with curious peers, he confidently tells them about his tics, which they amusingly misinterpret as insects. “No, a different kind of tic,” he laughs, explaining that it’s simply a “reaction.” So far, the kids in his second-grade class have been understanding, which makes me ponder why adults often lack the same grace. When we venture out, it’s the adults who tend to stare, their gazes lingering uncomfortably.
My son’s tics don’t impair his vision; he notices when people gaze at him. “I don’t want to be different,” he confided to me one day. I feel the same anger when I catch others staring, and I’ve been tempted to respond with a gesture when he’s not looking. Okay, I’ll admit it—I’ve done it. There was this one woman in Target who was staring at him with an expression of horror. She definitely had it coming.
I was taken aback the first time my son asked for advice on handling the stares. Seeing the hurt in his eyes, I didn’t want him to feel like he was any different from anyone else. So, in a moment of inspiration, I told him, “Just say, well, poop on you.” Thankfully, he found it hilarious because what kid doesn’t love bodily humor?
A few weeks ago, I overheard him mutter, “Well, poop on you,” directed at a person who was staring. He recalled my words from long ago! I considered suggesting a more suitable mantra for him, but then I realized this one worked perfectly. It helps him shift his focus and energy, making him laugh and keeping his spirits high. We’re sticking with it.
It’s perfectly normal to look. I just have one small request: please wear a smile when you do. He sees you. An expression of confusion or curiosity can be misinterpreted by an 8-year-old. If you continue to stare, don’t be surprised if he mutters something cheeky under his breath. And I might just return your gaze with a playful gesture. I may not be winning any parenting awards, but this approach suits us just fine.
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In summary, navigating the challenges of Tourette Syndrome is a journey filled with ups and downs, but it’s also a path of growth and resilience. We learn to embrace our differences, find humor in tough situations, and encourage understanding from those around us.