My child has strings attached. The strings stretch to the sky. Invisible. A marionette. I don’t know who controls them, but they are cruel. He jerks and jumps and dances. Sometimes he falls down or spills his drink. You know that feeling you gMy child has strings attached. The strings stretch to the sky. Invisible. A marionette. I don’t know who controls them, but they are cruel. He jerks and jumps and dances. Sometimes he falls down or spills his drink. You know that feeling you get when you see your child get hurt? This is like watching them fall down the stairs. Every single day.
My child has handed over the control of his body to Tourette Syndrome. I know it could be worse. So much worse. Nonetheless, I can’t help but mourn a normal life for him. One where he can skate by, without teasing and stares, where I don’t have to preface new playdates with, “So, you know my son has Tourette’s?”
At the same time, I am exhilarated for him. My child will never be able to just skate by. This will teach him perseverance. He will always be the center of attention, even when he doesn’t want it. This will nurture his leadership abilities. He is learning to master the connection between his mind and body. This means he’ll be much stronger than most.
His resilience is amazing. He tells kids he has tics. They think he has bugs. He laughs and says, “No, a different kind of tic.” This tic is a “reaction” he tells them. So far this year, the other second-graders have been graceful. It makes me wonder why adults are so ungraceful. We go out in public and adults don’t glance at him. They stare long and hard.
My son’s tics don’t make him blind. He has 20-20 vision and notices when people stare at him. “I don’t want to be different,” he told me. I see them staring too, and it makes me angry. Sometimes I’m tempted to give these people the finger when my son isn’t looking. Okay, fine, I’ve done it. This lady in Target once was staring and scowling at him with the most appalled look on her face. She deserved it.
I was caught off-guard the first time my son asked me what to do about people staring at him. In that moment, looking at the hurt and shame in his eyes, I didn’t want him thinking he was any different than anyone else. Under duress, I fumbled around for an answer and this is what came out: “Just say, well, poop on you.” Luckily he thought that was hysterical, because what could possibly be funnier than bodily functions to a school-age child?
A few weeks ago, I heard him mutter, “Well, poop on you.” He had caught someone staring and remembered what I’d said over a year ago. I had completely forgotten that I told him that. I debated whether I should come up with another mantra (maybe more appropriate) for him to say to get himself through people’s stares. But I realized this works for him. It redirects his thoughts and energy. It distracts him and makes him laugh. We’re keeping it.
It’s okay to look. That’s only natural. I just ask you one favor: When you look at him, please put a smile on your face. He sees you. Your frown of confusion or curiosity is misunderstood by an 8-year-old. If you flat-out stare, you’ll probably hear him insult you under his breath. And I might return your stare-down or give you the finger. I’m not winning any parenting awards, but it works for us.