Though the genetics of Tourette Syndrome is not completely understood, medical professionals do agree that Tourette’s does have both genetic and environmental components. Often, Tourette Syndrome runs in families. We fall into that majority, with more than one ticcing family member.
When Rachel was seven and her little brother Silas was four, our family was preparing to join a missions organization as support staff missionaries. One Sunday morning, Patrick and I were speaking in a small church in West Virginia. As I stood before the congregation talking about tribal missions in remote places, I looked back and saw little Silas stretching his face and rolling his eyes. I assume my mouth kept talking about missions, but my brain and heart were thinking, “Oh, no! Here we go again!”
(Silas chose this photo for me to put with this post. He’s a nut!)
At first, we weren’t sure whether Silas was merely imitating his big sister or whether he was truly ticcing on his own. When he began ticcing in ways Rachel wasn’t ticcing, I figured he would eventually be diagnosed with Tourette’s as well. In addition to the facial stretching, Silas also began making this really cool noise with his mouth. It was sort of a clicking noise, but it wasn’t the usual tongue on the roof of the mouth clicking, this noise was different. None of the rest of us could make this particular noise. But Silas made it all the time. Seriously. All.The.Time!
For a few months, Silas’ tics came and went, fading in and out — lasting a day or two or maybe a week, then disappearing for a while before returning. Half-way through his kindergarten year, we moved to Florida to serve with the missions organization and enrolled Silas in a small, private school. The stress of leaving the only house and town and church he had ever known, living in an apartment, starting school in a classroom setting for the first time — you know, having his entire life go topsy-turvey — brought on the tics with full force.
Living in an apartment and trying to balance respecting our neighbors with allowing my children to be at home in our house was extremely stressful to me. I was constantly reminding them that people lived under us and across from us, that people could hear them screaming or stomping or wrestling. It was absolutely the worst time for Silas to develop a very loud screeching tic. But that is exactly what happened. And the more I tried to shush the children, the more he would screech.
Kindergarten was only half a day, letting out at noon each day. I would walk to the school and as I approached the classroom door to get him, he would run out, screeching loudly, shaking his head from side to side. Bless his heart, he would hold his tics in all morning; then when I showed up, they would all come out at once! Most every day, he would tic and tic and have a huge meltdown as soon as we got home. I would carry him to his bed and hold him and pray with him until his rigid body relaxed. Then he would take a nap. Many days, he didn’t even eat lunch until mid-afternoon. Being in the classroom for half a day wore him out.
Often, but not always, Tourette Syndrome is accompanied by some other neurological issues, like ADHD, poor impulse control, OCD, etc. Though Rachel has some OCD tendencies and occasional impulsivity, the co-morbid issues seem far more noticeable with Silas. Once he progressed to full days of school, we really began to notice the impact of Tourette Syndrome. He struggled in the classroom. If he held in his tics, he thought only of not ticcing. That meant he couldn’t think of math problems or comprehend anything he read because his entire brain was focused on not ticcing. If he let himself just tic, then he got in trouble for tapping a ruler on his desk or tapping his feet on the floor or making noises.
His teachers, most of whom were old-school classroom teachers and firm disciplinarians, did not understand Tourette’s and struggled to believe that he really wasn’t just being a naughty, squirmy boy. He regularly felt like he was in a no-win situation at school, so he began to shut down and give up. In math class, if he tapped his foot or bopped his pencil on his desk, his teacher gave him dirty looks or shushed him. But if he held in tics, he couldn’t get his math assignment completed. His teacher would see him sitting at his desk doing no work, assume he was defiantly refusing to attempt his assignment, and send him to the office to work beside the principal. His regular classroom teacher expected neat handwriting on every assignment – a ridiculous expectation for a child with tics. A child cannot write neatly while shaking his head, blinking his eyes, stretching his fingers and bringing his knees up to touch the underside of his desk – all as quietly as he can so as not to disrupt his classmates.
School was torturous for Silas. My attempts to advocate for him were often viewed as causing trouble or stirring up dissension or complaining. It soon became clear that we needed an official, formal diagnosis in order to press for Silas’ educational needs to be met. An excellent pediatric neurologist quickly gave us the diagnosis we needed and recommended a medication he thought would be helpful to Silas with minimal side effects. At first, we resisted the medicine.
When Rachel was first diagnosed, we had tried a medicine for her, but the side effects were much, much worse than any of her tics. So we stopped medicine and decided the tics were a mild annoyance, not worth any of the side effects. We planned to follow that same tactic with Silas. However, it became apparent that tics are not the same in every person and a one-size-fits-all strategy would not be the wisest approach.
As Silas continued to struggle in school, accomplishing virtually NO work at school, spending up to or in excess of three hours doing homework each evening, we knew we had to change the course. He began taking Intuniv, the extended release form of guanfacine, a medication that has been shown to help with ADHD and reduce tics. His first week on the medication, Silas was a walking zombie. His eyes were stuck at half-open, half-shut that entire week. He fell asleep at school. His entire personality was dulled. It was tempting to quit the medicine. But we knew we had to allow time for him to adjust. After those first few days, we saw great improvement. We first noticed a difference on the basketball court. Whereas before, he would rapidly run around the court waving his arms wildly, sort of spazz-like, the week after he started Intuniv, Silas was focused and more calm and controlled on the court. He scored several baskets; he stole the ball from opponents; he dribbled with greater control. We also began to see improvement at school. Though he still struggled to work independently and stay on-task, he ticced less and did not fall as far behind in his work. Even with the medication, the teaching strategies and classroom structure at the small school were not ideal for Silas and his needs. That much was clear.
Through a long series of events, I homeschooled for one semester before our family moved to Virginia and we enrolled the children in public school. Silas adjusted very well to homeschooling, much better than I had expected. He excelled with one-on-one instruction and paced himself through his work each day. We gave him noise-cancelling headphones, and I created a private workspace for him with a trifold display board. He could tic as much as he wanted because he was in the safety of his own home, among family. To my surprise, he also adjusted extremely well to the public school classroom. His first public school teacher was a perfect fit for him. She would be the first to say that she has a bit of OCD, and her highly-structured and organized classroom was exactly what he needed. For the first time, Silas was enjoying school!
Fourth grade brought some growing pains, and we had to learn some new strategies. Let me just say – fourth grade is hard! Most likely, we will need to work with his teachers to develop a formal 504 plan next year in fifth grade. I want to ensure he will get the help and accommodations he needs in order to be successful in school.
In some ways, Rachel’s tics are more noticeable than Silas’, so it has been surprising that Silas’ tics have been more difficult to overcome in a classroom setting. Neurological disorders are tricky like that – they don’t manifest exactly the same in any two people. Having experienced TS with Rachel has not made me any more of an expert in handling TS with Silas. There are certainly some similarities, but there are many differences in the way TS has affected them.
My twelve-year-old son Caleb also has some tic-like behaviors, though he has never been officially diagnosed and his tics are not interrupting his daily life. My younger boys have had some mild tics come and go, though so far they have not demonstrated vocal and motor tics for a solid year, and their tics would probably not be noticed by someone without a heightened awareness of Tourette Syndrome. I do have a nephew who has been diagnosed with Tourette’s and who has some OCD tendencies as well. So if you know anyone doing a doctoral dissertation on genetics and Tourette’s, we are probably a case study waiting to happen. (I should say – if you know anyone PAYING participants in a study, we’re a case study waiting to happen. We’ve gotta pay for college for all these kids somehow!)
Up next in Part 4, Silas will tell you about his experience with Tourette Syndrome in his own words.