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The Real Mothers of Kids with TS: Candy of Barrie, ON

Three years ago, my nine-year-old son was continuously popping his shoulder out of place. No matter how many times I pleaded with him, disciplined him, or explained to him that he was ruining the cartilage in his shoulder, he wouldn’t stop. I took him to our family doctor hoping that he could get my son to stop. The doctor told him exactly what I had said—that he could damage the cartilage in his shoulder. Our doctor also sent my son to be assessed by a specialist to see if he had Tourette Syndrome. This was “just to be on the safe side,” he assured me. He was certain my son didn’t have TS, he just wanted to rule it out. A few weeks later, we met with a specialist at our local hospital. The “testing” lasted almost an hour. As a mom, I didn’t notice anything out of the norm when the doctor had my boy walking, standing on one foot, then the other and so on. At the end of the appointment, the doctor confirmed that indeed my son had Tourette Syndrome. This conclusion surprised me. I thought TS meant vulgar outbursts. My son certainly didn’t do that! The doctor went on to tell me that many people with TS often have other conditions, like ADHD. Now I was sure this was wrong since my son was quiet and concentrated easily on schoolwork and other tasks. Then the doctor mentioned that people with TS often also have intense anxiety. Instantly, I stopped doubting and started listening. My son’s anxiety had been very intense for as long I could remember. I recalled having to install a smoke detector in his bedroom because of his fear of fire and burglary by robbers.  My son always worried I would die and I constantly reassured him that I would make it home safely. Recent fears include the world ending, zombies, his relationship with his father—all things he can’t control. I asked the doctor about treatment. The doctor advised me not to put my son on the medication until his symptoms got to the point where he couldn’t leave the house or function in society. I asked if there were other options. The doctor told me there was no cure, and basically, that is that. I helped my son get ready to go and we left the hospital. Afterward, I realized I hadn’t been given any information whatsoever on Tourette Syndrome, what to expect, how to help my son cope, support groups, or resources. I was his parent yet I felt totally helpless. Everything I know about Tourette Syndrome, I’ve had to learn from my awesome son and the Internet, so I’m very happy to now be connected with the Tourette Syndrome Foundation of Canada. Most people don’t know that Obsessive Compulsive Disorder often goes hand in hand with TS, or that depression is also quite common in people with TS and OCD. Since he was a little boy and was able to use his fine motor skills, I had a feeling that my son had OCD. He would line up his hot wheels cars in a perfect line from front to back, in order of colour. He knew which hot wheels car was the first one he received out of over 300 dinky cars. He had to sit at the same spot at the dining table each day or he would have a meltdown. No one told me that the reason my son would repeat something I said word for word was due to his Tourette Syndrome. I questioned him many, many times, about why he was repeating me, probably causing him to feel bad about it, I am sure. Today we’re entering new territory—the teen years of puberty and liking girls. But we do it together and with a greater understanding of his conditions. We do the best we can, taking each challenge one tic at a time.   The Real Mothers of Kids with TS is a new series on the TSFC Blog featuring actual moms and their experiences with their sons and daughters with TS. If you are a mom (or dad!) and have a story that you would like to share, please contact Ashley at the National Office at ashley@tourette.ca.


Candy of Barrie, ON

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