Living with Tourettes: My Son’s Surprising Diagnosis
posted by: Guest Blogger
Six months back, a friend asked my husband and me if we thought our son “Dude” might have Tourettes Syndrome. I reacted like someone had just stabbed me in the gut. What an extreme evaluation of my kid. He didn’t have THAT. Only people who scream and swear have Tourettes. He just had minor ticks. I changed the subject and tried not to act offended. We were offended. And incredibly defensive internally.
Today, I’m sitting here Googling videos on kids with Tourettes because our little man has Tourettes. There, I said it.
After an evolution of research and therapy and appointments with the best of the best, it’s clear. Not a day goes by without a tick surfacing and many have become complex ticks, meaning more than one in sequence. We consulted with a neurological doc at Children’s Hospital of Colorado and she confirmed that while his case is minor, it is Tourettes. It didn’t phase her and she explained that if he can live a happy existence and have ticks, who cares? She didn’t say those exact words, but that was the basic concept. Of course it bothers us as his parents. It’s often painful and frustrating and exhausting, for US. But what about for him? He doesn’t really care. He doesn’t know any different. Ticks to him are like sneezing or coughing to us. He has to do it. His brain insists on it. It makes him feel good or maybe better. That’s what he would tell you.
Tourettes isn’t always the extreme cases of people walking around dropping the “F bomb” like it’s their job. There are cases like that, but those are extreme. I can’t imagine being held captive to that kind of internal struggle. Cases like Dude’s happen to 1 in 1,000 kids, mostly boys. You might notice, you might not. Depends on the day in our case. A lot of people think Dude has itchy eyes. Nope, just blinks a lot. Others think he’s trying to act like a mouse. Nope, he squeaks. Some comment on how uncomfortable his shirt must be on him. Nope, that’s just his shoulders shrugging. And then there’s the times people think he’s looking up toward heaven. Nope, that’s the seizure ticks, or so we think. He snaps out of it after a few seconds, but he’ll have no memory of what just happened.
We’ve reached the point in time that it’s important to be honest with our Dude. He’s old enough that he should understand why we drag him from doctor to doctor. He should feel proud of his gifts and the way God created him. He should feel encouraged and motivated to strengthen the parts that need strengthening. He knows that he’s going to Brain Balance Centers three days per week so that the right side of his brain can get the superpowers his left side was born with. He knows that the 1.5 hours of home therapy, four days per week, is for that purpose. He also knows it’s up to him to work hard to get the very best powers.
He’s very clear that he has Tourettes and that it’s OK. It’s not a big deal. But he’s also becoming keenly aware that kids around him and adults alike think it’s weird and annoying and disruptive. And he knows there’s no one else “like him” at school. I hate that. I won’t allow him to feel alienated for something he has no control over. And I won’t allow him to believe that he’s annoying or “less” because of his struggles.
Brain Balance has been a blessing in our first three weeks. Challenging, all consuming, overwhelming, expensive and enough to put the rest of life on hold? Yes. Have we seen the digression they told us to expect? You bet we have. But when I sit in that waiting room and talk to other parents about what they’re walking through, it eliminates the feeling of isolation that’s so easy to get drawn into. Their eyes say the same thing my eyes do. Their deep breaths understand my deep breaths. Their frustrations and exasperation over school-related struggles are in line with mine. It’s refreshing to say the least. You know who else relates to each other there? The kids. My kid.
Last week we started a new time slot and Dude was given a new “buddy.” Upon seeing who his new bud was, I smiled internally because I knew this 10-year-old boy has Tourettes. I saw his mom clinging to the words of the director that the increase in ticks means the process is working. I saw the hope and the resignation in her eyes. I saw her son, Ian, exhibiting similar ticks to my sons. I spent the hour talking to Ian’s mom while our boys were in therapy together. I told her that Dude has Tourettes too. You would have thought I told her she had just won unlimited wine for life. The news was that good. I understood. We related to so much of what each other has walked through and I know it felt just as terrific to her as it did to me.
When Dude came running, full force, down the hall toward me at the end of his session, he whispered (loudly), “My new buddy makes noises too, Mom!”
Both moms smiled, genuine smiles. Ian whispered something to his mom and she said, “Didn’t you notice he had ticks, too?” He replied, “Oh. I thought he was just copying me.”
That broke my mama heart on so many levels. For Ian and for the 10-year-old version of my son. Rather than grab Ian’s cheeks and tell him how awesome he is I chose to tell him how cool it is to meet other kids with Tourettes. He told me there’s only one other kid at his school with ticks and Dude announced he’s the only one at our school. The only one. That’s just not a place anyone wishes to be in.
Now we have to navigate a way for our little man to turn this into a teaching tool for other kids. This video spoke to me quite loudly. If nothing else, it’s evidence to our little man that he’s not alone in the world. The more we can prove that to him, the less alienated he’ll feel as he matures. At least that’s the hope.
Gwen is a Denver mom of two kids. Photo: Doctor Tipster