“I Have Tourette Syndrome – and I am Proud.”
“That school incident turned me into the resilient man I am today — one who happens to have Tourette syndrome and active tics. So profoundly shaping was this experience that I would talk about it with my parents many times in the years that followed, and pick up some lasting lessons each time.”
I wear my label with pride.
As an elementary school principal, I understand and respect the concerns that some parents and even children have with labels. No one wants to hear that their child has ADHD, or a learning disability, or autism, or any other condition, for that matter.
But I am living proof that labels need not be negative. In fact, I have experienced benefits in my life because I accepted and made peace with my label. Let me explain.
My Childhood with Tourette Syndrome
As early as the second grade, I’ve experienced twitching. When I say twitching, I mean arms flailing, eyes blinking, and neck moving from side to side. Needless to say, I was relentlessly picked on.
One particular memory during my middle school years stands out even today. My arms would flail most vigorously when I was nervous or anxious, which was the case when I got called to the front of the classroom over a bad test grade. I could feel my arms tensing and my nerves start to get the best of me. I was controlling the tic as best I could, but it is exhausting to do so while also trying to listen intently.
I broke when my teacher said she would call my parents about the bad grade, because she thought I didn’t try hard enough on the test. Startled, my arm swung out – and popped the teacher in the shoulder.
All I heard were the “oohhs” coming from my classmates. Horrified, my heart sank while my neck twitched and my arms continued swinging all over the place. What a sight.
On the ride home, the students on the school bus were relentless. They made fun of my twitches and the fact that I had actually hit the teacher. I could feel my eyes well up with tears, but I just hid as best as I could in the bus seat. Sadly, this bullying wasn’t new for me.
When I got home, my parents only spoke to me about my bad grade. They agreed that I needed to work harder and study a bit more. But they never once mentioned the hitting incident.
Later that evening, I heard the phone ring and my stomach instantly turned. It was my teacher.
This is it, I thought. Now I am in trouble.
I heard bits and pieces of the conversation, almost as if my parents were purposely trying to keep me from hearing. The parts I could hear went like this:
“Yes, I am aware that he struck you.”
“You do know he has tics, right?”
“No, I will not be punishing him.”
“Yes, you can take it to your principal if you choose.”
“No, I will not punish him because he has done nothing wrong.”
“Did he apologize?”
“Good, then we are done here.”
Was I not going to get in trouble for this? What is happening right now?!
After the call ended, my mom walked to my room and said to me, “If I ever see you trying to use your tics to your advantage or as an excuse, I will not support you.”
The Lessons I Learned
This incident would turn me into the resilient man I am today — one who happens to have Tourette syndrome and active tics. So profoundly shaping was this experience that I would talk about it with my parents many times in the years that followed.
Through those talks, I realized that I had learned a few very important lessons that I carry with me to this day.
1. My parents never let me use my condition as a crutch or an excuse. They encouraged me to be honest about my most significant struggles. They also said that, while they were there for me, I was on my own to fight my battles and grow from the experience.
2. My parents never let me skip out on activities like public speaking or playing a musical instrument because of my tics. If anything, I am a better presenter and speaker today because of my tics. I have incredible body awareness when I am on the stage delivering a talk, and I fear no audience. When you are in full tic mode while giving a speech in front of thousands of people, and receive a roaring applause at the end, that’s enough for you to realize that tics mean nothing.
3. I was never allowed to feel too sorry for myself. When I would tell my parents about how someone in school was taunting me about my eye rolls or my neck tics, their standard response was, “Are you alive and healthy? Did their words do damage? Then what they say doesn’t matter.”
4. This taught me that, ultimately, no words can hurt me. And if no words can hurt me, no one can get through my Teflon skin. I eventually learned that no one would ever be able to say anything to me that I hadn’t already heard before.
Though I didn’t know it at the time, I eventually realized that my parents were always teaching me how to accept and live with my label.
It’s an interesting concept: Help your children, but teach them to help themselves at the same time. Help pave the way for their success, but do not do it all for them. Be their silent partner.
Parents, if you want to help your child, the best thing to do is to stop fighting their battles for them. They will learn nothing if you do the work for them and make the world look like peaches and cream. Unfortunately, that’s not reality. In fact, a child who hasn’t had a chance to build their own coping skills will crumble when their parents are not there. I know this because I’ve seen it happen so many times.
Let your child develop resilience. Teach them to accept their label, and to wear it proudly. I wear my label with pride because it has made me the man I am today.
Tourette Syndrome: Next Steps
- Read: What’s the Truth About Tic Disorders?
- Self-Test: Tic Disorders in Children
- Read: Teach Problem Solving to Kids with ADHD
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