Stop Staring! My Son Has Tourette Syndrome

Jake screeches and headbangs like he’s at a heavy metal festival. But no music plays, and Jake is only seven — other children at the playground stare. Jake shakes until he falls over. One kid jeers: “Weirdo.” Other parents raise their eyebrows as I do nothing. Jake cannot help it, and neither can I. My son — who I’m calling Jake here — has Tourette Syndrome. Drawing attention to his tics makes them worse. So if you see us, or people like us, in the park one day, here’s what you need to know.

You have seen it in your newsfeed. Tourette’s has been all over social media lately — Lewis Capaldi stopped his tour to address his. Stars like Billie Eilish have disclosed theirs. It’s even on TikTok. People are aware, but does the average parent know what it entails? I certainly didn’t. Before Jake was diagnosed, my knowledge of Tourette’s was limited to an Adam Sandler movie punchline.

In real life, Tourette’s means Jake is hijacked by tics daily. His hand tenses up repetitively, which makes writing hard. He squints, grimaces, or blows spit bubbles. Vocal tics mean he randomly squeals or screams.

Sometimes he stutters the same word like a skipping CD. Tics make him jump, kick, or punch himself. Or chant obscenities. These behaviours look deliberate but are not. We used to worry Jake’s struggles were behavioural. But tic disorders like Tourette’s are neurological conditions.

Jake had been struggling with school. He disrupted his class with odd noises and funny faces. Teachers complained that he would not stay still. But he was easygoing at home and expressed sadness that he could not behave for his beloved teacher. Worse, he was embarrassed when kids laughed. We saw multiple specialists who assessed him for conditions like Autism or ADHD. But each time, he did not meet the criteria for a diagnosis. One doctor even accused me of lying, saying he couldn’t be so impulsive at school yet so helpful at home.

Last Christmas, I finally experienced what his teachers saw daily. Jake was excited about the sparkling Santas at “Twinkle in the Park.” But suddenly, he ran away. When I caught up, my innocent, chubby-cheeked boy had launched into a string of F-bombs. We got a lot of glares and shocked faces. But I finally realized Jake wasn’t in control. A Google search led me to suspect tics. Later, a specialist agreed and explained that Jake had Tourette’s Syndrome, and what we assumed were idiosyncrasies or misbehaviour were actually tics.

Imagine seeing someone yawn. Hold that yawn in! You probably cannot. Your body makes you respond with a yawn of your own — like a tic. Tics are repetitive and involuntary movements or vocalizations. To receive a Tourette’s diagnosis, you must have two physical tics and one vocal tic for over a year. I have lost count of how many tics Jake has. Before, Jake would try to hold these tics in for the school day, leading to “tic storms” where he would lose control. Once, he began throwing himself into the wall shouting absurd phrases. Thankfully, his teacher accommodates him now, which makes a huge difference.

Jake’s teacher is fabulous at supporting him. She encourages him to squeeze a stress ball when his hand tic hurts or to walk around if he cannot stop kicking. She politely ignores yelps and faces. With these simple changes, he does his work and does not disrupt the class. She allows him to be himself, which has increased his confidence and helped him make friends, even if there is some bullying.

The social stigma that comes with Tourette’s is huge. Jake’s drawings get jokes about scribbling. His inability to throw a ball consistently leads to teasing. His vocalizations annoy others. We frequently deal with people who think that his tics are deliberate. Like the sales clerk who confiscated our purchase because Jake kept tossing it. Or the passport photographer who yelled when Jake kept making faces. Or the substitute teacher who crumpled up his work because it was not done neatly.

Children who squawk or stick out their tongues are labelled rude. No one wants to play with kids who screech or twitch at the playground. Despite this new age where we preach gentle parenting and acceptance, many still believe that children should be seen and not heard and judge those who are different.

The judgement of outsiders is the most considerable stress Jake experiences, and honestly, it’s the most challenging part for me, too. I see the dirty looks and hear the whispers. Should Jake have to disclose his diagnosis to receive patience? Why are people so quick to label a kid “bad”? Jake and I hope that next time you see a child acting strangely, you will ignore it or offer a smile in case they cannot help it.

Last week, Jake was thrilled to be invited to a birthday party. At the end of the party, a classmate of Jake’s commented: “Jake is so weird.” Jake stared down, not sure what to say. The kid ran off for more cake, but I managed to call: “Well, I love him anyway.” Jake looked at me and smiled. He will have challenges growing up, but we are doing our best, which is enough for now.

Nicole Hunt is a kindergarten teacher, turned Stay-At-Home-Mom, turned writer. She loves books, nature walks, and having coffee with friends. She and her partner-in-chaos, Matt, live in Oakville with their four quirky kids and their golden retriever, Ruby.