Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

Life with Tourette Syndrome

02/11/2018 | Published by: Family to Family Network

Tourette syndrome is a neurological disorder. It involves repetitive movements or unwanted sounds (tics) that can’t be easily controlled. Males are affected by Tourette’s 3-4 times more often than females. It starts in childhood, typically between the ages of 3 and 9 years old.

When my son Ryan was in elementary school, he had a few tics like throat clearing and eye blinking, but the behaviors were mild. I thought the behaviors would decrease as he got older, but I was wrong. His behaviors became more severe in high school. He is now 21 and has both vocal and physical tics. He shrugs his shoulders, paces back and forth, and constantly talks to himself.

I don’t want my son to be limited in his activities because of any disability, so I’ve perfected the art of planning ahead.

At restaurants, for example, I ask for a corner table and seat Ryan at the end so he can easily get up if he needs to pace. This reduces his anxiety because he is free to move around.

When we go to the movies, we typically sit at the top row so there is an area where he can pace without disturbing others.

Planning ahead and being aware of what works makes outings much more enjoyable.

Ryan was on a medication that helped reduce the tics, but after a few years, it stopped working. We’re now trying a new medication. If this medication doesn’t work, we may try a therapy called Comprehensive Behavioral Intervention for Tics (CBIT). The therapy is very structured and involves weekly sessions for about 10 weeks. Doctors work on awareness, behavior modification, and suggestions for changes in day-to-day activities that could help to reduce or eliminate the tics. I’m not sure if this therapy is covered by insurance, and the sad truth is that this will influence my decision. 

Sometimes I worry about the long-term side effects of medication. Should I accept my son for his tics rather than trying to change his behaviors? He’s not doing anything wrong or hurting anyone.

Sadly, when people see a young adult who “looks” typical yet talks to himself and walks back and forth all the time, they don’t understand. They sometimes stare and laugh because he is different.

It’s heartbreaking to me because Tourette’s does not define who Ryan is. It’s just one part of him. My son is very sweet, but many people don’t see that side of him. They see only the tics.

Tourette’s can last for years or a lifetime. Most individuals with Tourette syndrome go on to lead productive lives. I am thankful for my son’s job, which accommodates his need to move and his tics. 

Families can find information, support, and resources on the Tourette Association - Texas Chapter website. Their tuition-free Camp du Ballon Rouge is an annual weekend retreat that begins with a campfire on Friday evening and concludes with a Red Balloon Ceremony on Sunday morning.

Use the Find Services, Groups and Events section to find resources and Tourette syndrome support groups in your area.

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