By Adrienne Hill
Before I had children, I remember people saying that kids need to come with a manual. In my own journey with three children two of whom have been diagnosed with Tourette’s syndrome “plus” I would change that to the following: All kids should come with a psychologist, a psychiatrist, a couple of neurologists, a dietitian, an occupational therapist, and creative and understanding teachers! I recall sitting in Tim Hortons while my middle son was at a golf lesson. I listened to two mothers complaining about their problems with their kids. Their children wouldn’t pick their socks up off the floor, never remembered to wash their hands before eating and wouldn’t start their homework unless they were asked. At that time, my youngest son was avoiding school almost every day because of his fear of getting a migraine headache. His then fear triggered his migraines. How perspectives are different.
Terrible threes, fours and fives
I should have known that my children would be different from the days they were born. The first day that our oldest came home, he didn’t sleep as we were told babies would. Instead, he sat on my lap watching a movie and didn’t sleep until hours later. When we took him out in the car, he would scream as soon we started moving and stop when the car did (aren’t they supposed to sleep?).
That is, until the day I discovered that if I blared Sharon, Lois and Bram’s children’s songs (think: The boom boom of loudly played rap in a tricked-out car), he would be quiet. Unfortunately, it could only be Sharon, Lois and Bram. The “terrible twos” didn’t happen. I always joke that instead he had the terrible threes, fours and fives because that was when the temper tantrums and rages started, which continued into his late teens. His tics started when he was around four and they were fairly pronounced. We took him to pediatric specialists, but no one said it was Tourette’s. In grade 11, he lay down on the floor in the hallway during classroom change and kicked and screamed like a two-year-old.
Diagnosis and teacher’s magic
Our breakthrough moment was when my mother-in-law sent me an article from The Globe and Mail about Tourette’s syndrome with a note saying, “I think this is what he has!” When I approached my family doctor, she said, “Oh, I don’t think so. That’s a very serious diagnosis.” Still, she referred him to the Tourette’s clinic at Glenrose Hospital in Edmonton. There began our journey. He was diagnosed with Tourette’s syndrome, obsessive compulsive disorder, sleep disorder, and a rage disorder at the age of 11. School was not easy for him. Prior to his diagnosis in grade two, we had pulled our son out of public school. His behaviour had become a problem for which I was getting daily phone calls.
He tried to stab a teacher with a pencil. He would disappear from the classroom and hide under a desk. He would have temper tantrums. Instead, we enrolled him in a gifted charter school and hoped that this would help to our relief, it did! Looking back, the teachers were very special. All the students mostly boys probably had a diagnosis of some kind, and the teachers used strategies that worked.
Wanda Cummins was my son’s teacher and, with her magic, he went from a behaviour “problem” who was “refusing” to work to a kid who wrote a chapter book during the first week at his new school. I didn’t even get a single phone call that first week. (Some came later, but the approach was always how they could help him, not “He’s a problem. Do something!”)
My middle boy has minor tics and mild obsessive–compulsive tendencies, and also suffers from migraine headaches and severe motion sickness. I don’t think there was a car during his childhood that he didn’t vomit in (we should own stock in Gravol). However, he had no issues at school, was involved in multiple extracurricular activities and seemed pretty “normal” to us, despite some pretty serious medical concerns.
Long road trip
When my third son was born, I was so excited. Then he started screaming whenever he was in the car. We made a road trip to Penticton and he screamed all the way there and all the way back. Sharon, Lois and Bram didn’t work, and nor did any other music. I knew at that point that he would probably turn out to have Tourette’s syndrome. However, I was so much more knowledgeable this time around. He was referred to mental health support when he was four and was diagnosed with sensory processing disorder, obsessive–compulsive tendencies and severe anxiety. The sensory issues were difficult to deal with. He dropped from the 75th percentile in height and weight to the 10th percentile. We couldn’t get him to eat any protein: All he wanted was toast and bananas. We needed extensive help from a dietician and an occupational therapist. The tics started when he was seven. Luckily, they were mild. Unlike for his older brother, elementary school went very well with just a few hiccups along the way. This time we had a diagnosis and a team of experts that could help him and his teachers. Then grade eight hit. He grew eight inches in six months. He started getting migraine headaches three to six days a week. The anxiety kicked in and he would have trouble just walking into the school. We would have to walk around the school several times before I could convince him to go through the front doors. Then the biting and skin picking became a problem, to the point of chewing off the tips of his fingers.
The kids are alright
The good news is that all of my boys, despite their struggles—or, as I like to think, because of their struggles—have grown up to be successful and productive members of society, with each in university and finding success in their goals and dreams. All three have had accommodations at the university level. All three have had the benefit of a community of help. All three are great to be around and are funny, smart and empathetic young men. I truly hope that the children of those women in Tim Hortons grew up to be awesome, just like my kids.
Adrienne is a mother of three adult children, two of whom have been diagnosed with Tourette’s syndrome “plus.” She is a part-time high-school math teacher, and has volunteered for Tourette Canada as an in-service provider for 12 years. She has also been involved in assisting with virtual support groups for western Canada, has recently become an in-service provider trainer and has been on the executive of the Calgary Chapter of Tourette Canada for the past year.
Reprinted with permission from Tourette Canada (tourette.ca).