‘The doctor described it as a ‘stress fracture’ but a mental one. She had hit her breaking point.’: Mother shares daughter’s journey with Tourette Syndrome

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Our Baby Girl

“When I was 17 years old, I left for school with a hot dog for breakfast. The friend who was picking me up asked why, and I mentioned that recently I had been feeling ill in the morning if I didn’t eat. She made a joke along the lines of ‘I hope you aren’t pregnant,’ and we both laughed it off. Later the same day however, I would find myself in the washroom at school waiting for the test results that would evidently change my life. As one may have already figured out—it was a positive result; in more ways than one.

Tanner was born on January 5, 2008, in the Grande Prairie hospital. I had only turned 18 a few months before, and the only thing I knew was I was now responsible for this living being. I told myself to take it one day at a time and see what the next day has in store. For the next few years, this strategy would take us from our small hometown to another, and then to Edmonton, before we eventually settled in Spruce Grove. We added her sister to our little family, and life was good. Tanner had grown fast, sometimes it was hard to keep up with her. She passed all of her ‘firsts’ early: walking, teething, talking, not to mention being off of the growth percentiles since she had been born.

newborn in hospital bed with mother
Courtesy of Janessa Nadeau

By all accounts, she was doing well. She loved Hello Kitty and The Mickey Mouse Club, her favorite color was blue, and she wanted to be an astronaut farmer on the moon when she grew up. Her father and I would tell her she could be anything she wanted, as long as she worked for it. She started to read, and from that came studying. It brought her joy to learn new things, and she would always be telling us fun facts she had learned in between page flipping. It kept her busy, and busy was good.

A Small Noise

‘Mm. Mmm.’ That was how it started. Small, almost unnoticeable. It was a small noise in her throat, a swallow, a clicking. Playing with her vocal cords. Unless you spent time with her, really knew her, you wouldn’t even catch it. But we did; her dad and I at first, and then her grandpa, and eventually others around us. We weren’t worried, it was quiet and happened sporadically. On an annual check up with her doctor, I asked him about it. He asked her to make the sound, and she was unable to consciously replicate it on command. In doing so, she became nervous and the sound appeared. He told us it was nothing to worry about. He said her brain is bored when it wasn’t being stimulated and the sound was a way of burning off excess energy. He said with gentle correction and maybe starting school early, she would grow out of it. For a long time, she did.

When we enrolled her early, we chose a small private school. We noticed the positives right away. She came out of her shell, made friends, and loved her teachers. She had always been a good student, and she flourished in her new school. She had excellent grades, was active in sports clubs, and had a solid group of friends around her. Throughout the years, she progressed, and her little noise became minute, if nonexistent. We forgot about it actually, for a long time until one day in Parent Teacher Interviews, her new teacher asked us about it.

young girl with her mother
Courtesy of Janessa Nadeau

Her previous teachers had always known about it. He mentioned during downtime he noticed she would make a guttural sound in her throat and she didn’t seem to be aware of it. We said something along the lines of, ‘Yeah, she does that sometimes’ and left it at that. At the age of 10, we figured she wasn’t going away anytime soon. By the time she finished grade six, we felt that a transition into public school would give her more opportunities in the future. And so in September 2019, at age 12, we started her in a new school.

For a few months, it was great—until it wasn’t. By the time Fall 2020 rolled around, the stress of all the little changes was starting to show cracks in her facade. A new school, higher expectations, new friends, kids who acted like bullies, and a worldwide pandemic had begun to take its toll. She started coping with her stress and anxiety in an unhealthy way; through not sleeping, tears or anger. We decided it would be best for her to start seeing a counselor. We let her choose one, who just so happened to have a therapy dog. The appointment was booked for mid-November, and for the first time in a while, she felt optimistic.

Waking Up With Tics

On an unassuming Sunday while out for a drive with her Dad and her sister, they hit a patch of black ice. The car fishtailed before eventually crashing into the median. Thankfully aside from some sore muscles everyone walked away relatively unscathed. Or so we thought. The day after the accident, Tanner woke up with tics. Tics not like the quiet throat chuffing we had grown accustomed to. They were whistles, stuttering her words, tongue clicking, eye scrunching, nostril flaring, head bobs, popping her lips, blowing raspberries, and arm spasms. They were severe, to the point of where she was hurting herself and they were causing her pain. They were unrelenting as well, one on top of another with no rest in between. We waited to see if they would lessen at all, and when they did not we took her to the Stollery Hospital in Edmonton.

car in the snow after crash
Courtesy of Janessa Nadeau

The doctor ruled out viral or bacterial causes through many, many tests. She sat in the ER for hours while they tried to come up with something before ultimately suspecting it was linked to her emotions. He interviewed her and learned between school, the pandemic, bullies, and the accident she had just hit her breaking point. He described it as a ‘stress fracture’ but a mental one. He suggested we see a doctor who had been a resident there and gone on to specialize in kids with tics and other neurological disorders.

She was able to see us the next day and proceeded to confirm the previous doctor’s suspicions—it was due to stress and linked to her emotions. She told us there is medication that would treat her anxiety, but it would not help the tics. She encouraged us to start her in therapy to start learning healthy coping mechanisms. And that was that.

We took some time at home while she adjusted before sending her back to school, to give her time to adjust to her new normal. Over time we learned a good sleep routine and down time could lessen her tics. When she felt ready, we sent her back to school, only for her to come home the very same day in tears because the teacher had asked whoever was whistling to please stop. It was her tic—for a long time her whistle tic was one of the most pronounced. The first few months were by far the hardest for her. We learned about new things like masking, simple and complex tics, and comorbidities.

Her therapist diagnosed her with GAD, generalized anxiety disorder, which would eventually become her TS comorbidity. We continued to see her specialist, who broached the subject of Tourette Syndrome with us. Tourette syndrome (TS) is a neurological disorder characterized by sudden, repetitive, rapid, and unwanted movements or vocal sounds called tics, there is no cure. She let us know despite suspecting, she would not be able to make a formal diagnosis until she had had both motor and vocal tics presenting for a year or longer.

young sisters hugging and smiling
Courtesy of Janessa Nadeau

Tourette Syndrome

We kept thinking tomorrow would be the day she would wake up and it would stop. She would try suppression to keep from ticcing, only for them to seem to explode with twice as much force. She once described it as a shaken-up soda can that needs to explode. A good analogy, considering the circumstances.

Tanner decided she wanted to stay away from medication for as long as she could so she could learn to manage her tics naturally. This meant a lot of trial and error. She would come home from school sometimes so exhausted she would burst into tears as soon as she would get through the door. Kids had figured out they could trigger her tics by saying certain phrases or noises to make her tic for their amusement. They would laugh at the actions she would make not realizing she was in pain from trying to suppress it. Most people don’t realize the amount of energy that goes into having Tourette Syndrome.

There is the constant mental battle going, ‘Don’t, don’t, hold out a little longer,’ not to mention the embarrassment aspect of it. Then there is the physical side of it. Imagine flexing every muscle in your body for a prolonged period of time. Now imagine doing that every day and you can’t control it. You would tire fast, as she does. The twitching, head bobs, flicks, and flails, they take their toll. There were many parent-teacher conferences, many seat rearrangements, and many, many tears. We started allowing her to take what we dubbed ‘Mental Health Mornings’ after particularly rough days at school.

young sisters smiling for photo
Courtesy of Janessa Nadeau

They would help her recenter and give her a break from the constant onslaught. As time passed we made sure every new bus driver or teacher knew, set up code words, and made sure to stay on top of her sleep schedule. It seemed to help, and before long we found ourselves at the one-year mark. This was the day she had been waiting 365 days for: diagnosis day.

A few months prior, her specialist had gone on maternity leave. She transferred her care over to another doctor who was less receptive to Tanner’s ‘au natural’ approach to her anxiety. She had pushed anti-anxiety meds during the previous appointment, and this one was no different. Tanner declined and so she spoke to me instead, asking if I was sure it was what I wanted. I told her I supported her and she looked at me like I was making the wrong decision. She asked if there was anything else we wanted, and Tanner mentioned she would like her formal diagnosis.

The doctor looked at her pointedly and went, ‘You have motor and vocal tics, it has been longer than a year. Congratulations, you have Tourette’s. Not sure why it matters, it doesn’t change anything.’ I watched my beautiful, strong child, who had worked so hard to overcome everything over the last year, completely crumple. At that moment, I decided I would never let anyone belittle her diagnosis again.

mother with her daughter
Courtesy of Janessa Nadeau

Education and Advocacy

After receiving a formal diagnosis, Tanner spiraled. She had to come to terms with the fact that she really did have a disability. She walked through the five stages, having taken for granted being relatively average. She always says being normal when you are ‘normal’ seems so boring until you’re different: then all you want to be is normal. Instead of focusing on the progress made, she focused on what she was. I, too, had to come to terms with the fact that this was something I wouldn’t be able to fix for her. I threw myself into learning what I could about her condition, hoping to understand what they told us we couldn’t.

I read articles hoping they would help me until I came across one that stated it was more likely to develop if a parent has a condition themselves. Devastated (and sobbing) I texted Tanner, apologizing it was my fault she had to deal with this as I had OCD. Feeling like I had failed her as a parent while also trying to not overshadow her own emotions was a difficult path to navigate. She assured me it was in no way my fault and she would never accept it was anything I had done. I hated feeling like I was failing her while she was being strong, so instead, I decided to channel that into something else.

Education.

family together smiling
Courtesy of Janessa Nadeau

When I mention to someone our child had TS, I find myself answering different variations of the same questions. When most people think of Tourette Syndrome, they think of the highly sensationalized Coprolalia, which is blurting out curse words and obscenities. In reality, this tic is rare, and less than 10% of those diagnosed with TS have it. There are different types of tics; simple affects only a few parts of the body, whereas complex affects a variety of body parts, usually in a pattern. No two people have the same tics, and TS does not affect a person’s intelligence. Vocal tics range from sniffing or throat clearing to noises and words. Motor tics can be as small as blinking to as large as accidentally headbutting the window while we are in the car.

None of this defines who Tanner is as a person. She is a talented artist, comedian, and musician and is learning two languages on her own. She has spent the last 6 months volunteering 3 days a week at a center in town and has decided when she gets older she wants to be a foster parent. She will do all of these things in spite of her condition as she won’t let it hold her back. She has already become an advocate for herself; having had conversations with family about their preconceived notions of what TS is as well as what is and isn’t appropriate to say. When meeting someone with a visible disability, you would not begin the conversation calling attention to it, however, I’ve found that does not always translate to invisible disabilities.

girl posing for photo
Courtesy of Janessa Nadeau

It is not something to be laughed at and made fun of like it has been for so long in the media. It is a real neurological condition and when people see that, they think it is okay to repeat that behavior. If that mentality towards things is never corrected, we will never see change. This is why we have found sitting down and having conversations about what change she would like to see is so important. We do this so that the next time someone goes to make a joke or ask an invasive question, they remember.

They remember she is not just a punchline. They remember she is not comedic relief. She is made up of all the experiences she has had in her life, good and bad. She is a real human being, and she has had a real journey. Every part of her matters, and she is perfect just as she is.

There are many Tanners in the world. Like tics, no two are alike. And personally, she is my absolute favorite.”

girl posing for picture
Courtesy of Janessa Nadeau

This story was submitted to Love What Matters by Janessa Nadeau of Spruce Grove, Alberta, Canada.  Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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