Having a boy with Tourette Syndrome means judgmental stares from strangers, worrying about him every second, and advocating for him every step along the way.
Parenting Special Needs SPM/MM

F**k, This Is Tourette’s

Having a boy with Tourette Syndrome means judgmental stares from strangers, worrying about him every second, and advocating for him every step along the way.

By Amy Sargeant of artshambles.com

Someone’s kid is going to be the first one on the playground to yell a four letter word. That word spreads like wildfire and soon, every parent is asking, “Who did you learn that from?!” The answer is going to be: my kid.

I’ve always had a robust, frequent range of profanity, with plans to rein it in as soon as I had kids. When my son was 18 months old, though, it wasn’t his potential for swearing that I was most concerned about; it was his sudden repetitive eye blinking. A pediatrician, however, assured me that it was a ‘tic’—very common, especially in boys, and not to worry, he’d “grow out of it.”

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The eye blinking did go away, but was replaced by throat growling, which was in turn replaced by curling his arm up like a little wing. Then, there were the tantrums. Yes, toddlers have tantrums. These were not those. These were hitting, kicking, screaming, biting, scratching, throwing things, spitting, crying, hours-long, waking nightmares. They began out of nowhere. An argument over an apple at Whole Foods could last for four hours.

Once, a neighbor called the police, “concerned about my child’s well being.” When the cops arrived, my son’s tantrum had ended, and he was happily helping me insert quarters into the washing machine for laundry. Still, it stung. Someone out there, my own neighbor, called the cops on my parenting. I Googled “tantrums,” needing to see another kid and another set of parents as baffled and desperate as we were at this behavior. My husband took him to the pediatrician and received a condescending pat on the back. “Daaaad, he’s a toddler! Ha ha, hang in there!” 

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One day I called my mom after a doozy. The house was in total disarray, a three hour long tantrum recently withered after my husband held my son, wrapping his bigger arms around my son’s littler arms and torso until he stopped fighting, both of them still sweating and panting. “What do I do?” I asked my mom in desperation. She replied, “Have you tried a sticker chart yet?”

Several doctors and thousands of hours of research later, a pediatric neurologist diagnosed my son with Tourette Syndrome at the age of five. Turns out those tics didn’t go away, and those tantrums weren’t just about being a toddler. They were about enduring what is called Tourette’s rages—a kind of a neurological forest fire going off in the brain. Turns out a sticker chart wouldn’t have done sh*t.

Tourette’s is a weird disorder, full of unknowns and co-occurring conditions. Most people’s universal idea of Tourette’s is that of a crazed guy shouting socially inappropriate swear words in public. There’s even a meme called “Tourette’s Guy” with a bunch of videos online where he shouts stuff like “F*ck salt!” and “Don’t talk Sh*t about Total!”

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The vulgarity aspect of Tourette’s is actually a pretty uncommon symptom; approximately 10% of Tourette’s patients suffer from it. Called Coprolalia, it’s characterized as an involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks. It comes from blending a Greek word “feces” with a Latin word “to talk.” The onset of this symptom is usually puberty, and given my son has not yet reached puberty, it’s still a scary unknown.

One Saturday morning, my two kids and I visited the local farmer’s market. They have a booth where customers can leave their dog with volunteers while they shop. On our way out of the farmer’s market, we stopped to pet all of the doggies, when a woman volunteer with a thick gray braid down her back, wearing a long skirt with Teva sandals, loudly addressed me. “What’s wrong with your son’s eyes?”

I heard her, and I’m pretty sure that the dozen or so other people milling around heard her as well, but in that moment, I just wanted to make the moment disappear, so I ignored her. I also thought that maybe my son, who was ruffling the neck of a dog, might not have heard her, so I turned away and fake trilled to my kids, “Oh my gosh, look at the doggie drink! He’s thirsty!” and quickly rounded them up to leave. Thick gray braid lady, however, was having none of it, and she asked again, louder this time, What’s wrong with your son’s eyes?!”

At the time my son had a pronounced eye rolling tic, and this was one of his worst. As his eyes slowly rolled from side to side, his whole face simultaneously froze in an unfortunate rictus grimace. And something interesting about tics—when mentioned, they are triggered, and the tics intensify. So as he was ticcing away, I just said, “He has Tourette’s,” grabbed my kids by the hands, and dragged them quickly out of there.

As we exited, my brain and adrenaline swiftly kicked on and, shaking with latent anger, I began sourcing options as to how to confront this woman without my children present. I wanted to figuratively cut a b*tch. Consumed with irrational plotting, I was surprised when my son interrupted. He was upset. He was upset with me for telling this stranger about his Tourette’s. “Why did you have to tell her?” he asked. At first, I took this to mean that he was embarrassed or ashamed, and it was that, but it was also that it was no longer my information to tell.

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My son will not ever be “Tourette’s Boy.” He’s a super smart, cool kid who sometimes rolls his eyes or wiggles his eyebrows or grunts, and that’s his own business. My path is now to support and advocate however he chooses.

When I think of his future and the challenges puberty and beyond may bring, I am fearful, but even if he is among the 10% of Coprolalia sufferers, I’ll be right there with him, shouting expletives in public if that’s what support means. If nothing else, I’ve given him a pretty rock solid skill set in swearing.


About the Author

Amy is an art writer, art educator and mom of two kids, living in southern California. She loves to bake and hates to run, but runs for her love of baking. You can find more of her writing at artshambles.com.