top of page

The life that chose me: Navigating the education system with Tourette syndrome


iStock.com/canovass

By L. Phillips (she/her), elementary educator, Kamloops

 

Each fall for the past two years, I have presented to the bachelor of education students at our local university. My presentation is on Tourette syndrome (TS), one of the most misunderstood syndromes in our society, despite its relatively high prevalence. A neurological condition that one is born with, TS affects 1 in every 100 children in Canada. The numbers are higher if you also consider tic disorders.

 

I start my presentation very simply: “Please tell me your name and one thing you know about Tourette syndrome.” The answers vary of course, from those with first-hand experience with a friend or family member, to those, the majority, who admittedly know next to nothing. Few understand the extent to which the syndrome affects the everyday life of an individual with the condition.

 

I always end with what I call my “myth-buster,” where I tell them that the person they see in front of them is a happily married mother of two, an educator of over 20 years, and a person with TS. “If you take one thing away from this presentation,” I tell them, “let it be that Tourette syndrome isn’t always obvious. There is more than meets the eye.”

 

I remember my first tics starting at about six years old. We didn’t know what was causing them at the time, but my dad had some too, so it wasn’t anything new in our house. Growing up Gen X, a diagnosis of any kind was rarely something we were given. My parents did all they could. They took me to a doctor, who sent me to a neurologist. But all he would say is that I had nervous tics. As if this was something I could control.


It is impossible to talk about TS without talking about its co-occurring conditions, as it is rarely a stand-alone condition.

I’ve never had big and loud tics. In fact, few people other than my closest friends even knew I had them. I had a few motor tics: tics caused by the involuntary movements of one or more muscle groups. My vocal tics, tics that create sound or words, were small, things like sniffing or breath holding. I didn’t fit the stereotypical portrait of TS with the swearing and hitting things. But then, few people with TS do.

 

Despite the fact that the media focuses on and portrays people with TS as swearing at everyone and calling out random words, this associated condition of TS, called coprolalia, is in fact very rare, affecting only 10% of all TS patients. Busting myths around this syndrome is not easy with the media working against you.

 

It is impossible to talk about TS without talking about its co-occurring conditions, as it is rarely a stand-alone condition. Most people with TS also deal with a number of co-occurring conditions: ADHD, OCD, anxiety, depression, sensory processing disorder, autism, learning disabilities, and conduct disorders, to name a few. And it is this compounding factor of multiple diagnoses that makes it so difficult to live with TS. Anxiety can induce tics, which makes the individual more self-conscious, which causes more anxiety and tics, which can cause a loss of focus, which affects the ADHD, which causes the OCD to go into overdrive trying to find some control in the chaos.

 

Many people with tics will exert energy trying to stop or suppress their tics for a period of time. Suppression is hard. Most of us can do it for a short period of time, but it’s exhausting. To give you an idea of what it’s like, try not blinking for a full minute while reading a book. As you struggle to focus on keeping your eyes open, at what point do you just give up and stop trying to figure out the words? This is what it’s like to suppress a tic. For a child in a class, imagine how hard it would be to keep up with a lesson or get a written assignment done. It’s also why a child with TS can appear to “show no tics” during class but explode with tics later when they get home. Holding it in all day is hard, but kids are surprisingly skilled at it, especially when they don’t want to stand out. Just because you can’t see tics in the classroom, doesn’t mean they’re not happening.

 

It wasn’t until 2019, in my early 40s, that I finally sought out a diagnosis. My tics had eased after finishing high school, as is common in post-adolescence, but I struggled with increases in the frequency and intensity of tics at various points in my life. Why seek a diagnosis now? Because in the fall of 2018, at the start of her Kindergarten year, my daughter started experiencing tics.


...having someone say the words out loud and confirm my diagnosis was like having someone hand me the moon. ...There wasn’t something “wrong with me.” There was a neurological reason behind all I had been through. It was simply part of who I was and it was okay.

First vocal, then motor, her tics started increasing in number and frequency with every passing month. It was then, watching her struggle with the frustration of a body literally out of her control, that I realized it was time I found a doctor to give me the diagnosis I’d suspected for some time. My diagnosis made it easier for her to get diagnosed, as TS is a highly hereditary condition. My daughter is the third generation in our family to have it. So, in the spring of 2019, after 30-plus years of dealing with the symptoms, I was finally diagnosed with TS. It was an unexpectedly validating moment in my life. It’s funny how you can convince yourself that having a label really doesn’t matter when you’ve obviously lived just fine for so many years. But I discovered that having someone say the words out loud and confirm my diagnosis was like having someone hand me the moon. I wasn’t “crazy” or “too nervous.” There wasn’t something “wrong with me.” There was a neurological reason behind all I had been through. It was simply part of who I was and it was okay.

 

In the fall of 2019, we got my daughter’s diagnosis of TS along with generalized anxiety and sensory processing disorder. In the last couple of years, she has also been diagnosed with ADHD and now OCD. It’s a lot. She doesn’t have coprolalia but she has a lot of different motor tics: hands, arms, toes, feet, legs, neck, back, eyes. Some of them can be very painful. The neck and back tics give her muscle spasms to the point that I had to start taking her to massage therapy. The feet tics make it painful for her to simply walk, and the hand tics make it hard to hold a pencil. There are days when she cries from the pain of the tics and asks why she has to have them. I don’t have an answer. All I can do is hug her and tell her how strong she is, how proud I am of her, how much we love her. Then there are the tic attacks, when a tic gets “stuck,” and that can happen non-stop for hours. All we can do is comfort her until she finally falls asleep from exhaustion. Most recently, she started to experience rages, which are common with children dealing with multiple diagnoses and TS.

 

My daughter’s TS has been a lot more intense than mine. It has worn us all out at times. Her ADHD affects her moods as much as her attention and makes her volatile and reactive. If you’ve never heard of rejection sensitivity dysphoria (RSD) that comes with ADHD, take the time to read up on it. Additudemag.com is a good place to start. I cannot say enough about the drastic effects RSD can have on a family and a child. And it’s far more common in kids with ADHD than you’d think (95% in fact).


But at the end of the day, despite the struggles, I feel that it has made me a better teacher, not only for kids like my daughter, but for all kids with neurological disorders.

Anxiety and OCD put holes in her self-confidence and make her afraid of trying new things, leery of change, and constantly seek reassurance. Sensory processing disorder means we’ve been through more styles of pants and shoes and socks with this child than most families would in a decade. All this accumulates and comes in waves (as is the way with TS), sometimes calmly, sometimes like a tsunami. Some days are good and we can relax a bit. Other days it’s all we can do to get through, to reach the end and be able to say, “Okay, we did it. We survived another day.” There are no words to quite encompass the level of frustration and exhaustion we can deal with on a daily basis. How hopeless I feel sometimes, as a parent, knowing there is no cure for TS.

 

But at the end of the day, despite the struggles, I feel that it has made me a better teacher, not only for kids like my daughter, but for all kids with neurological disorders. I’ve known what it’s like to be the child with TS, but now I’ve also seen what it’s like from the outside as the parent. It’s allowed me to see past the behaviours to the struggles the child is going through.

 

Tips on teaching a child with Tourette syndrome

 

Take the time to talk to the child and talk to the parents. Ask them about the tics and symptoms they experience and how these affect them. Ask them about any triggers they might have and how you can alleviate them. Ask if there is anything you can do in the classroom to make it a safe place for them.

 

Recognize that tics are involuntary and are not done on purpose. No matter how loud or annoying or inappropriate a tic seems, it is involuntary and the student can’t help what they are doing. If the tic is difficult for you to handle, imagine how hard it is for the child. If you’re not sure if something is a tic, simply wait and ask the parent. The parents are your greatest resource.

 

Ignore tics. The more attention you feed them, the worse they get. Ignore them and encourage other students and staff to ignore them as well.

 

Provide a safe space to release tics if needed (such as a break room). Suppressing all day is difficult. If the child can release tics in a room where others can’t see or hear them, it can make a big difference in their day.

 

Recognize the other conditions affecting the child’s learning. Educate yourself on all facets of their multiple diagnoses and how they affect each other.

 

Be flexible and creative. Sometimes a creative solution can be found to help both the child and those around them. For instance, a tapping tic on a desk can be very distracting, but what if you were to put a foam pad on the desk for them to tap instead? They can continue their tic as they need to, but it is now less distracting to others. Note that such ideas should be passed by the student first. For some students this can feel like they are being shamed for their behaviour, and for others it can alleviate social pressure. So always check first.

 

Educate. It is important that everyone working with the child is educated on their condition. This can include the janitor, secretary, and librarian who may interact with the child at some point in the day. It is also beneficial for the students in the class to know about the child’s condition as well, as it helps them be more empathetic. However, keep in mind that you should never talk to the class without the child and parents’ explicit permission. Not all kids are comfortable with their peers knowing.

 

Additional resources

Tourette Canada—includes a great handbook for educators

Tourette Association of America

Ontario Child and Parent Resource Institute

Kommentare


Die Kommentarfunktion wurde abgeschaltet.
bottom of page