Opinion Extra

Teen with Tourette’s syndrome seeks to help others understand the disorder

Joshua Jones
Joshua Jones

My name is Joshua Jones. I am 15 years old and have lived with Tourette Syndrome most of my life.

Tourette is a neurodevelopmental disorder that causes a person to twitch, make noises and say things they don’t mean. There is no cure, but symptoms often lessen as one approaches adulthood. About 1 in 100 children have TS or a tic disorder.

I have a more severe version of TS and my experiences are physically, emotionally, and mentally exhausting. My tics can be physical or verbal and are constantly changing. For example, when I began sixth grade, I spoke to my classes about the challenges I face with tics. Not long after, I had an uncontrollable tic storm that left me twisting on the floor like an epileptic seizure. I did not know when it would stop.

Fortunately, I got medicine from my doctors that helped. I also learned a therapy called CBIT which helps me compete with my urges to tic. I still have embarrassing experiences at school and in public like hitting myself, tearing my clothes or saying bad words, which is called copralalia. There are both bad days and good days and it is not always so severe. I struggle to focus in class so I have to have accommodations for extra time on tests because tics continually interrupt me. Anxiety is a real battle as it both causes tics and results from them.

My family is supportive, loves me and suffers with me in this. I am glad to have a support group where I have met other children with both severe and mild cases of TS. I have experienced some stigma associated with TS and have found speaking to groups before I participate really helps.

In fourth grade, I was really nervous about transitioning from home school to public school. I took time to explain to everyone in my class about TS on the first day of school. My teachers were great and my classmates became very understanding and supportive, especially when substitutes gave me a hard time because they thought my tics were me misbehaving.

Middle school has been more challenging because my tics got worse and kids can be less understanding, but my teachers and friends who know my condition are empathetic and that makes a huge difference.

I enjoy sports. They help me grow in confidence, have healthy outlets and manage stress. I also enjoy participating in drama at school. When I focus on something of interest my symptoms often go away. In short, I’m really just a regular kid who deals with the same things everyone else deals with, but I’m having to grow up fast because of the challenges I’ve described.

When my tics started we had no idea what it was. Maybe there are other kids and parents who are experiencing this too. I really want to bring hope to those living with TS because it takes a lot of courage to get out there anyway and live life. People may not be able to remove their problems but they can overcome them.

Last summer I became a Youth Ambassador for the Tourette Association of America and I am passionate about educating and helping people recognize, understand and empathize with TS. We are in the midst of National Tourettes Awareness Month and I wanted to share my story with you. Thank you for reading and if you want to learn more or get involved, please visit Tourette.org.