We got the official diagnosis on Valentine’s Day morning: our 8-year-old little boy has Tourette’s Syndrome, or TS for short. Now that it’s going to be a permanent part of our life, I figure I should embrace the abbreviation.

His regular doctor diagnosed him with OCD, ADHD and Tic Disorder last month. She said we’d need to visit the neurologist for the official Tourette’s diagnosis. Our original appointment was all the way in September, but we managed to get in earlier. Click here to read my post about that, which goes more into my son’s history and how we got to where we are now.

Tourette’s Syndrome and Therapy

Tourette’s Syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics. These tics can range from simple, such as blinking or throat clearing, to complex, such as jumping or repeating words and phrases. The onset of symptoms typically occurs in childhood around 6-8, and the severity of tics can vary over time. They can also go away and change over time. While there is no cure for Tourette’s Syndrome, various treatments and therapies can help manage the symptoms and improve quality of life.

So that’s where we are now, preparing for CBIT therapy, which is Comprehensive Behavioral Intervention for Tics. We get to start that in March. It teaches people to understand the causes of their tics and teaches them to redirect that energy.

CBIT consists of three main components:

(a) Training the patient to be more aware of his or her tics and the urge to tic.
(b) Training patients to do competing behavior when they feel the urge to tic.
(c) Making changes to day-to-day activities in ways that can be helpful in reducing tics.

At least one parent is required to go through the therapy as well, so we’ll be able to work with him at home. Both his dad and I plan to be there so we can both work with him. I’m looking forward to getting that started.

And if you read my previous post, I’m happy to report he stopped squeaking last week! Although he did replace it with sniffing. It’s a weird three in a row type sniff, but it’s still better than the squeaking. And I can’t mention the squeak, because sometimes if you remind him about a tic, it comes back!

And I haven’t shown him any videos of other kids with TS because he’s highly susceptible to suggestion. I can almost guarantee if he sees another kid doing some weird tic, his brain will be like, wow good idea, I haven’t done that one yet!

It’s always good to look at things with a bit of humor, lol. I felt the above meme was pretty accurate.

Moving Forward and Looking Back

So now that the Neurologist is out of the way, and we know it is definitely Tourette’s, I feel like we can move forward a bit. I plan to do a more reading up on TS and how it affects children. I posted on a Facebook group asking for book recommendations and got some good ones.

Moms notice things with their kids that others don’t. I knew there was something going on with my son since he was a baby, but nobody else did. Even now, other people don’t notice most of his tics. But mom does.

He hit all his developmental milestones on time and was healthy and intelligent. But people didn’t see what I was going through when he was a toddler and if they did, they assumed he was just being difficult. My mom told me I needed to spank him. But I knew spanking wouldn’t help anything, and I understand now how hard it must have been for his little brain to try and deal with this stuff and not be able to fully communicate what was going on.

We went through the absolute worst of it from 2-4, when my husband was in the military and gone or deployed a lot. The intensity of the tantrums was astronomical. Most of them were the result of not being able to complete a certain activity that made things feel “right.”

Like if he had a fit in the car, he would start screaming for me to give him a kiss and he’d be better. But I’d be on the highway and not able to do that. He would get worse and worse until he was thrashing in his car seat and screaming at the top of his lungs. He even tore apart one of the car seat arms in a fit.

And my instinct is to not give into his demands because I didn’t want to encourage it, but it would be to the point where he was going to make me have an accident. So, I would have to find a place to pull over and give him a kiss and help him calm down before we could continue.

And when this stuff would happen, I’d think…this can’t be what all kids are like. Why on Earth do people keep procreating if this is what they have to deal with? I felt like I was losing my mind, dealing with that by myself, several times a day.

I feel like now I understand all that a little better, and I wished I understood more back then what the issue was. I didn’t realize it was his OCD and the need to make things feel right that was setting him off. I’m sure that’s incredibly hard on a toddler. I know it was incredibly hard on me!

He is a very sweet kid, and thankfully stopped the screaming tantrums around 4, which is coincidentally when his first tic showed up. I’m looking forward to us all going through the CBIT therapy together so we can learn more how to work through the Tourette’s, OCD and ADHD together.

I’ll write more about the therapy once we get started in March.