My child is like a marionette, held by invisible strings that seem to reach toward the heavens. These strings are controlled by something beyond my understanding, and at times, they seem quite cruel. He twitches and moves in ways that can be unpredictable, sometimes spilling his drink or tripping over his own feet. Imagine watching your child tumble down a staircase each day—that’s how it feels.
Tourette Syndrome has taken hold of my son’s movements, and while I know it could be far worse, I still grieve for the simple life I wish he could have. A life free from the teasing and the curious stares that come with each new playdate, where I don’t have to explain, “Just so you know, my son has Tourette’s.”
Yet, amidst the challenges, I find a sense of exhilaration for him. He will never have the luxury of blending in. This experience will teach him resilience and perseverance. He is often the center of attention, even when he wishes for a quieter moment. He is learning to navigate the relationship between his mind and body, making him stronger than many.
His ability to cope is remarkable. He openly tells his peers about his tics, which they sometimes misinterpret as bugs. With a laugh, he clarifies, “No, it’s a different kind of tic,” explaining it as a “reaction.” The kindness shown by his classmates this year has been heartwarming, leaving me to ponder why adults often lack such grace. In public, it’s the adults who seem to gawk, staring at him as if he were an exhibit in a museum.
Despite his tics, my son has perfect vision and is acutely aware of those who stare. He once confided, “I don’t want to be different.” I share his frustration and anger when I witness these unwanted gazes. Sometimes, I admit, I’ve been tempted to respond with a rude gesture when he’s not looking. Like that woman in the store who glared at him with disdain—she certainly had it coming.
The first time my son asked me how to deal with the stares, I was taken aback. Seeing the hurt in his eyes, I didn’t want him to feel like he was any less than anyone else. I fumbled for words and blurted out, “Just say, well, poop on you!” Thankfully, he found it hilarious, as kids often do with bathroom humor.
Recently, I overheard him muttering, “Well, poop on you,” after someone stared. He had recalled my silly advice from over a year ago. I considered offering him a more suitable phrase, but I realized that this one worked for him. It redirects his thoughts and sparks laughter, so we’ll stick with it.
It’s natural to look. All I ask is that if you do, please smile. He sees you, and your frown—whether it’s one of confusion or curiosity—can be misinterpreted by an 8-year-old. If you stare too long, you might hear him mutter something under his breath, and I might just return your glare or even respond in kind. I’m not earning any parenting awards, but it’s effective for us.
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Summary
In this unique parenting experience, Dr. Alex Morgan reflects on the challenges of raising a child with Tourette Syndrome. While navigating the societal perceptions and reactions, he emphasizes the importance of resilience and humor. His son’s ability to cope with teasing and stares is commendable, and Dr. Morgan encourages others to approach these situations with kindness and understanding.