Spotlight on Dylan Peters
Growing up with Tourette Syndrome.

by Dylan Peters

I just turned 10, meaning I have now lived with Tourette Syndrome (TS) for six years. I was diagnosed at the age of 4 after I began jerking my head side-to-side, staring and repeating words.

My parents explained to me that Tourette Syndrome was a neurological disorder where my brain tells the muscles in my body to move over and over again. These actions are called tics. They told me there was no way to stop these actions or sounds— no medicine, no therapy— and I could not tell my brain to stop sending these messages to my muscles. As I was only 4 years old, I had a hard time understanding what my parents were telling me. Yet, I knew my head was jerking, I was staring and I was repeating things like, "Mom, I am going to go outside... go outside." I would always whisper the words I was repeating and it seemed no one ever noticed. Yet, I was scared of how others would react when they saw me making these strange actions and sounds. I told my parents I did not want anyone to know about my disorder. We told our close family members, but that was it— no teachers, no friends, no parents, no coaches, not even my dentist.

At the beginning of 3rd grade, I knew the time had come to share my secret. I had several tics, both vocal and motor. I had an eye blinking tic that was really bad and was happening constantly. My Mom and I met with my new teacher and we came up with a plan to tell my class my story. I was terrified my friends would treat me differently and make fun of me. I was worried they would think I was weird and would no longer want to be my friends. When my Mom dropped me off at school I told her, "I am going to have faith in my friends and everything is going to be OK."

Later that morning, the class gathered in a circle and our teacher discussed differences and how those differences make each of us unique. She then introduced my Mom and told them that I had something to share. I stood up and told my friends I had Tourette Syndrome. I explained what TS was, about all the tics, and made sure they knew I could not stop the tics from happening. I told my friends I am the same Dylan today that I was in kindergarten, 1st grade and 2nd grade. The only difference is now you know I have Tourette Syndrome and I have tics that you may see or hear. Challenges, disorders, syndromes, glasses, braces— none of these are things to be ashamed of. They simply make you… YOU. I wished that everyone could have friends like I have. I was amazed at how they all understood me, and they even shared some special secrets about themselves.

Since then, I have made it my goal in life to "create acceptance and tolerance one tic at a time." I recently wrote a book called Tic Talk— Living with Tourette Syndrome— A 9-year-old boy’s story in his own words (Little Five Star). I hope that my story brings awareness, acceptance and tolerance of those who have Tourette Syndrome, and provides reassurance to others with TS that they are not alone.

Let’s backtrack a bit to expose what it’s like to live with Tourette Syndrome. Over the past six years I have had numerous motor and vocal tics. Some of the motor tics include: jerking my head, blinking my eyes, motioning my hands in the air, rolling my head around on my shoulders, opening my mouth really wide and taking in large breaths of air. The vocal tics that I have had are: repeating myself or others, saying slogans over and over, clearing my throat, making gurgling noises, sniffing, humming, gasping for air, snorting, gulping and making a "t" sound.

We never know what tic I might awake with in the morning or how long the tic will last. Some tics stay with me
for weeks, others for months. I have had several tics at the same time. I have also gone weeks with having just one tic that happens infrequently— these are the best weeks. Tourette Syndrome and the tics that go with it wax and wane. Some days are good and some days are bad. In the last several years, I have tried many different medications and combinations of medications. Recently, we found a combination that has been very successful for me in reducing my tics. I have learned, however, that medication that helps me today may not help me tomorrow. There is no cure and Tourette Syndrome will probably be a part of my life forever.

Last April was especially rough for me. I began having an abdominal crunch tic that occurred nonstop and I was wrenching my side at the same time. It was as if I was doing ab crunches all day, every day. I became very sore and was in a lot of pain. We tried some medication that eventually helped slow the tics down, but I had to stop the medication because it made me feel like a zombie. I did not make it through a day of school for two weeks. That tic went away after about six weeks. It was awful and I am thankful that I have only had one of those full body tic episodes. I have learned that many kids with TS have an increase in their tics when they are stressed or anxious.

One of the biggest positives that came out of sharing my secret was the communication between my teachers and me. Because chewing gum sometimes helps with my tics, my teacher allows me to do that in class. Also, if I am having a lot of tics and need to leave the room to take a break, I can just give her "the signal" and leave quietly. We usually know in April or May who my teacher for the next school year will be, and my Mom and I meet with her to go over the TS and my tics. We talk about how the teacher manages her classroom and how we will work together to make the year successful.

Dylan Peters is a 4th grader and the author of Tic Talk— Living with Tourette Syndrome— A 9-year-old boy’s story in his own words. His favorite subjects are math and science. He plays the piano and enjoys computer and video games. He hopes to one day be a surgeon. See Dylan’s Web site at www.tictalkbook.com.