On Having A Child With Tourette Syndrome – Scary Mommy

On Having A Child With Tourette Syndrome

Cheri Champagne

My son has Tourette syndrome.

Tourette syndrome is a neurological disorder characterized by vocal and motor tics. It is often diagnosed in childhood, and despite popular belief, it does not always include the shouting of coarse language (coprolalia). Some children who have Tourette’s also exhibit signs of obsessive-compulsive disorder (OCD), attention-deficit hyperactivity disorder (ADHD), or have impulse-control difficulties.

My son is smart, caring, funny, witty, friendly, charismatic, and an all-around wonderful 8-year-old boy who just happens to grimace, flick his head, scrunch his shoulders, clear his throat, and make “fart” noises all the time. He also has impulse-control issues, which means that he can be destructive or behave otherwise inappropriately.

Honestly, my son’s Tourette’s is not at all bad, but that doesn’t stop us from getting disapproving glares or openly curious stares from people when we’re out in public.

I hope that sharing my son’s story will help others better understand Tourette’s and encourage people to reach out to those they know that have it. I would also like to think that another parent will read this, and either feel comforted that they’re not alone on their journey or perhaps realize that this might be a reason why their child is twitching too.

The Slow Progression

It began with a “100-day cough” that lasted one year. When my son was 2, the doctor’s diagnosis changed to a “post-nasal drip”. After 1 ½ to 2 years of chronic coughing and throat-clearing, we became concerned that our son had asthma. We took him for testing, and he was diagnosed with “bronchial spasms.”

At the age of 3, my son begged to go to school, so we enrolled him in junior kindergarten. After a month, we were taken aside by the teachers who told us they thought our son had a learning disability because he was making “disruptive noises” in class and had difficulty focusing during certain activities. I lamely explained that my son had bronchial spasms and assured them that I would keep a close eye on him at home.

Not long after that, my son began to have really “hard” blinks. We saw an optometrist and were told that he had dry eyes, so we started putting drops in them. It didn’t stop the blinking, but we continued anyway, hoping that it would make him feel better over time.

Soon kindergarten rolled around, and my son’s disruptive behavior was brought up again. It escalated to the point where the teacher said that she was getting the school psychologist to have a meeting with him, and he was being discussed in the teachers’ meetings, as she didn’t know how to get him to stop interrupting the class. It was during that year that we began to notice another change with him: He started to stretch his mouth wide open frequently while reading. I asked him why he was doing it, but he just replied, “I can’t help it.” This concerned me, but I genuinely didn’t know what it was or what I should do about it.

In first grade, my son’s tics worsened. His teacher had a different method of dealing with “trouble” students, and she separated my son from the class, facing his desk toward the wall and putting a divider between him and everyone else. She said that this was to “stop him from getting distracted and disrupting the other students.” To my everlasting shame, I did nothing about it. I trusted the teacher’s judgment, as I wasn’t there to see firsthand how he was behaving in class.

My wonderful, bright, happy child soon turned morose. He began to emotionally collapse in on himself, he hated going to school, cried and pouted all the time, and would watch me sadly from the classroom window while I walked away. It continues to break my heart just thinking about it.

This past year was my son’s second-grade year. At our first parent-teacher meeting, I heard the words that I was expecting (and dreading): “Your son is very sweet and bright, but he has some trouble focusing, and his constant noises are a disruption to the class.” I told her that it was something that we were “working on” at home, but honestly, I didn’t know where to go from there, and I just hoped that this teacher didn’t push my child to the corner of the class like the last one did.

The “Light Bulb” Moment

I don’t remember to whom I was speaking or what the discussion was about, I just remember the epiphany. That person mentioned meeting someone with Tourette syndrome, but that person didn’t have the “swearing kind.” In my ignorance of the disorder, I was entirely confused, as I’d thought that the two went hand-in-hand. I immediately looked it up online…and cried. That was exactly my son. The overwhelming guilt that washed over me was like nothing I’ve ever experienced. For over six years, the symptoms of Tourette’s were right there, and I didn’t see it. I felt like a terrible mother.

The Diagnosis

There are no tests that can diagnose Tourette’s. Diagnosis is based on a discussion about the symptoms and the doctor’s observation. Our family doctor confirmed my suspicions, but immediately referred my son to a pediatrician who specializes in Tourette syndrome to be certain. We waited several months for the final diagnosis, and about four months ago, we got it.

What the Future Holds

Since my son’s diagnosis, I have done quite a bit of research. I am by no means an expert, but I now feel that I understand my son. Because of the nature of Tourette syndrome, my son’s tics will change and evolve. I must prepare for anything and everything. Tomorrow, my son could wake up and start swearing or he could have full-body tics. There is no way of knowing what tics will come down the road.

I am happy to say that my son is now happier than ever. He has an explanation for his tics, and no longer has to listen to his teachers and his parents ask him why he’s making noises or ask him to stop. He can be as he is.