Tourette Syndrome (TS) is an inherited, neurobiological disorder characterized by repeated involuntary movements and uncontrollable vocal sounds called tics. So how do we help as parents?
As many as 1 in 100 school-aged children show a partial expression of the disorder—such as chronic tics and transient childhood tics.
When you first suspect your child has 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 initial 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.)
TS is more than tics. 83% 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 doctors, 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 communication 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 advocacy organizations like NJ Center for Tourette Syndrome and Associated Disorders exists. NJCTS will put a program together to educate the faculty and staff at the school (in person or virtually). One of their 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.
It is also important to know your rights when it comes to education. Does your child need an IEP or 504 plan?
Under the Individuals with Disabilities Education Act (IDEA), students with disabilities that adversely affects their learning and requires special education are entitled to assistance through an Individualized Education Program (IEP). Not every student with a disability requires special education but may still qualify for supports and accommodations through Section 504 of the Rehabilitation Act of 1973.
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 like Billie Eilish and Jamie Grace, New York Giant Quincy Roche, comedian Samuel J. Comroe. Even NYC Public Advocate and gubernatorial candidate Jumaane Williams, 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. For parents, there are numerous support groups on Facebook like TIC Talk, Tic and Tourette Syndrome Caregiver Support, and NJCTS’ group TS Talks: A Community for Tourette Syndrome Families.
Bottom line? You are not alone on this journey. For more information about Tourette Syndrome, tic disorders, and associated disorders, visit www.njcts.org.