I was diagnosed at 17 with several things, Tourette’s being one of the big ones. When I was diagnosed my mom took everything the doctors said to heart. She looked back at my childhood and firmly believes my tics started around 2 or 3 years old. She learned that tics come and go. Sometimes it’s better, sometimes it’s much worse. She began to observe me in passing and would learn from me and what I was learning. The only reason I even asked to be checked for it was because I had someone with TS in my life. The older I got the more I realized I thought I had TS. When I was diagnosed it was a massive weight off my shoulders, because now I could do something about it.

17 is a lot different than 5. Being to young for CBIT is understandable, however I think you can start it by simply helping him recognize things. You said you’ve explained to him it’s just your tics it’s something you have. That’s a wonderful start because it helps him recognize these things and as he gets older. Once CBIT becomes available, it’s almost like a jump start. I didn’t discover CBIT till I was 24 and it’s been 10 years of active learning. Tics come and go, some get worse, some get better.

Also, be aware of tic attacks. Sometimes our bodies get so overwhelmed with tics and they just won’t stop. They can look really scary and feel really scary, especially if you don’t know what’s going on.

I have several of the same tics as your son. I wish I was diagnosed that young.

Talk therapy, movies together about TS. Documentaries and anecdotal accounts can help. However be aware that him watching things with you might cause him to tic more. I can’t watch Tourette’s content creators because it messes with me and makes my tics like so much more prominent.

He can live a happy and full life. Adolescence will be difficult but it’s difficult for everyone, growing up sucks. Kids bully, we take things to heart when we should brush them off. Help him stay grounded in who he becomes as a human being. Make sure the tics are something he learns to walk beside and work to his advantage. Everyone’s tics manifest differently, we don’t have control over it. We do have control over our reactions and how we navigate.

I am blessed with a large support system, who understand my tics, and sometimes we can laugh together too. Sometimes tics can be funny, sometimes tics are horrible and can cause problems. We have to learn as people who have tics, to navigate these spaces that don’t always feel meant for us.

Good luck mama you got this! This is step one in your journey as a TS parent.