My child appears to be a marionette, strings extending into the unseen. These invisible threads are controlled by something beyond my reach, something that can be harsh. He dances and jerks in a way that sometimes leads to spills or falls. You know that heart-wrenching feeling when you see your child hurt? It’s akin to watching them tumble down a flight of stairs every single day.
My son has relinquished control of his movements to Tourette Syndrome. I acknowledge that circumstances could be much worse. Even so, I find myself mourning the loss of a typical life for him—one where he could move through the world without the burden of teasing or judgment, where I wouldn’t have to initiate playdate conversations with, “Just to let you know, my son has Tourette’s.”
Yet, amidst this, I feel a rush of excitement for him. He will never simply blend into the background. This experience will forge his perseverance. He will always find himself in the limelight, even when he wishes to fade away. This reality will hone his leadership skills and teach him about the intricate relationship between his mind and body, ultimately making him more resilient than many.
His ability to bounce back is remarkable. He openly informs other children about his tics, which they mistakenly think are bugs. With a chuckle, he clarifies, “No, it’s a different kind of tic.” He explains it as a “reaction.” So far, his classmates have shown kindness. It raises the question: why do adults often lack such grace? When we go out, adults tend to stare intently, leaving him more vulnerable than he realizes.
Despite his tics, my son is not oblivious. He has perfect vision and is aware when people fixate on him. “I don’t want to be different,” he shared with me once. I also notice the stares, and it infuriates me. There are moments I’ve considered responding with a rude gesture when he’s not looking. Admittedly, I have done just that. One instance in Target stands out—a woman’s expression of shock as she gawked at him; she certainly deserved my glare.
The first time my son asked how to handle the stares, I was taken aback. Seeing the hurt in his eyes, I wanted him to realize he was just like everyone else. I stumbled for a response and blurted out, “Just say, well, poop on you.” Thankfully, he found it hilarious, as children often do when it comes to bodily humor.
Recently, I overheard him muttering, “Well, poop on you,” after catching someone watching him. He remembered my words from over a year ago, which I had forgotten. I considered offering him a more suitable phrase to cope, but I realized this was working for him. It redirects his attention, lightens the mood, and allows him a moment of laughter. We’re sticking with it.
It’s perfectly normal to look. I only ask one thing: please offer a smile. He perceives your expression, and a frown of confusion can be misinterpreted by an eight-year-old. If you choose to stare, you might hear him mutter a clever retort. And I might just return the stare or respond in kind. While I may not win any parenting accolades, this approach suits us.
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In summary, while children with conditions like Tourette Syndrome may face unique challenges, they also possess remarkable resilience and humor. It’s essential to approach them with kindness and understanding, fostering an environment where they can thrive despite societal perceptions.