My Life with Tourette Syndrome
I wear my label with pride.
As an elementary school principal, I understand and respect the concerns some parents and even children have with labels. Nobody wants to hear that their child has ADHD or a learning disability or autism or any other condition.
But I’m living proof that labels don’t have to be negative. In fact, I have experienced benefits in my life from accepting my label and making peace. Let me explain.
My childhood with Tourette syndrome
I already experienced twitching in second grade. When I say twitch, I mean the arms are flapping, the eyes are blinking, and the neck is moving from side to side. Needless to say, I was relentlessly teased.
One special memory from my middle school days still stands out today. My arms hit the hardest when I was nervous or anxious, which it did when I was called forward because of a bad exam grade. I could feel my arms tense up and my nerves starting to get the best out of me. I have the tic under control as much as possible, but it is exhausting to do so while trying to listen carefully.
[Read: When It’s More Than ADHD]
I broke off when my teacher said she was going to call my parents about the bad grade because she thought I hadn’t tried hard enough on the exam. Startled, my arm swung out – and slammed the teacher in the shoulder.
All I heard was the “oohhs” coming from my classmates. My heart sank in horror as my neck twitched and my arms continued to circle. What a sight.
On the drive home, the students on the school bus were relentless. They made fun of my twitching and the fact that I actually hit Teacher. I could feel my eyes fill with tears, but I hid as best I could in the bus seat. Unfortunately, this bullying wasn’t new to me.
When I got home, my parents only talked to me about my bad grade. They agreed that I had to work harder and study a little more. But they never mentioned the incident a single time.
[Read: The (Reactive) Parent Trap]
Later that evening, I heard the phone ring and my stomach turned immediately. It was my teacher.
That’s it, I thought. Now I’m in trouble.
I heard parts of the conversation, almost as if my parents were deliberately trying to prevent me from hearing. The parts that I could hear were like this:
“Yeah, I know he hit you.”
“You know he has tics, don’t you?”
“No, I’m not going to punish him.”
“Yes, you can take it to your headmaster if you want.”
“No, I’m not going to punish him for doing nothing wrong.”
“Did he apologize?”
“Well, we’re done here then.”
Wouldn’t that get me into trouble? What is happening now?!
After the call ended, my mom went to my room and said to me, “If I ever see you try to use your ticks to your advantage or as an excuse, I will not support you.”
The lessons that I learned
That incident would make me the resilient man I am today – one who happened to have Tourette’s syndrome and active tics. This experience shaped me so deeply that I often talked about it with my parents in the years that followed.
Through these conversations, I realized that I had learned some very important lessons that I still carry with me today.
1. My parents never let me use my condition as a crutch or an excuse. They encouraged me to be honest about my most important fights. They also said that while they were there for me, I was alone to fight my battles and grow from the experience.
2. My parents never let me avoid activities such as speaking in public or playing a musical instrument because of my tics. If anything, I’m a better moderator and speaker today because of my tics. I have incredible body awareness when I’m on stage giving a talk and I’m not afraid of an audience. If you’re in full tic mode during a speech in front of thousands of people and receive a roaring applause at the end, that’s enough to realize that tics mean nothing.
3. I was never allowed to feel sorry for myself too much. When I told my parents that someone at school was mocking me about my eyes rolling or my neck tics, their standard answer was, “Are you alive and well? Have their words done any harm? Then it doesn’t matter what they say. “
4. That taught me that ultimately no words can hurt me. And if no words can harm me, no one can get through my Teflon skin. Eventually I learned that no one could ever tell me something I hadn’t heard before.
Although I didn’t know it then, at some point I realized that my parents always taught me to accept my label and to live with it.
An interesting concept: help your children, but at the same time teach them to help themselves. Help pave the way for her success, but don’t do anything for her. Be your silent partner.
Parents, if you want to help your child, it is best if you stop fighting for them. You won’t learn anything if you do the job for them and make the world look like peaches and cream. Unfortunately, that’s not the reality. In fact, a child who has not had a chance to develop their own coping skills will collapse when their parents are not around. I know this because I’ve seen it so many times.
Let your child develop resilience. Teach them to accept their label and wear it proudly. I wear my label with pride because it made me the man I am today.
Tourette Syndrome: The Next Steps
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Updated June 7, 2021
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