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Parenting a Child with Tourette Syndrome

A TS Resource Guide

When your child is first diagnosed with Tourette Syndrome or a tic disorder, you may spend time searching online for answers, researching treatments, or wondering what the future may look like. The reality is, every child is different and so is every TS journey. But you are not alone in your fear and frustrations. A simple hashtag search for #TouretteSyndrome will bring you to dozens, if not hundreds, of personal stories across social media.

What about doctors? Do I need a psychologist? Neurologist? Psychiatrist? While a neurologist will most likely make the initital TS diagnosis, most children with TS work with a team of specialists as well as their pediatrician. Here are some tips for that first visit. Recently, NJCTS held a Teen Summit, where participants got to hear from doctors from all three specialties and how each of these practitioners offer something a little different from each other.

TS is more than tics. Nearly 90% of those with Tourette Syndrome will experience one or more co-morbid, or co-occurring, mental health disorder. These can include anxiety, OCD, depression and ADHD. Like the tics, these conditions may wax and wane based on age, environmental changes, life changes, or …..just because. Lean on your team of docs, fellow parents, the child study team at school, and you and your child WILL get through it.

“My teacher doesn’t understand!” “I’m being bullied.” “I hate school.” Sound familiar? School is hard enough without TS. It is important to have that open line of communications with your child’s teachers. If they don’t know much about TS (most don’t), then it is your job to educate and advocate for your child. Sounds daunting, we know, but that’s essentially why NJCTS exists. We will put a program together to educate the faculty and staff at the school (in person or virtually). One of our amazing Youth Advocates can speak to the student body about the importance of embracing differences as well as give them a crash course on Tourette Syndrome.

We all understand the importance of representation in the media, especially for children. And although there is still stigma surrounding Tourette Syndrome, there are many public figures coming forward with their TS stories. Singers Billie Eilish and Jamie Grace, comedian Samuel J. Comroe, social media star Lele Pons, Twitch star Sweet Anita, TV journalist David Begnaud, and of course, soccer star Tim Howard. There are also many teens and young adults on social media talking about their Tourette. Check out Britney Wolf, Emma O’Connell, TicTastic, and Simply Tourettes. For parents, there are numerous support groups on Facebook like TIC Talk, Tic and Tourette Syndrome Caregiver Support, and Parents Of Kids With Tourettes Support Group.

Bottom line? You are not alone on this journey.


Thank you to Charlotte Regen and Carolyn Baldwin for sharing their stories and their insight into raising children with TS and finding a supportive community with NJCTS.


Articles from TSParents:


Webinars:


Other Resources:

You can join our Family Forum and learn more about NJCTS programs at https://njcts.org/help-for-families/.

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