I feel like our life changed over the holidays, when my 8-year-old son started to squeak right before Christmas break and continue through the Christmas vacation. He’s currently squeaking in the other room as I write this. We’ve been trying to work through the tics and ignore them, but they’ve suddenly intensified to the point where I felt we needed to stop pretending it wasn’t happening and fully address the issue with his doctor.

A tic is a sudden, uncontrolled, and repetitive movement or sound that a person cannot control. They can be either motor (movement) or vocal (sounds). They can also be simple (involving one body part or one noise) or complex (involving multiple body parts or longer phrases).

One of his tics is to smack himself in the forehead, which I didn’t understand was a tic until now. He does it when he gets stressed, and they had some testing at school right before the break, and he came home with purple dots all over his forehead. It seems he upgraded to using his knuckles and had bruised his own head. He also does a finger rubbing thing when anxious and had rubbed blisters on both hands.

I often joke that the first few years of this blog are just me complaining how difficult my son was as a baby and toddler. Many times I found myself Googling Aspergers and autism and it never quite lined up 100% with what he was doing. I had no experience with little kids and how they are supposed to act, the only thing I knew was that my baby didn’t ever act like the other babies I see. The babies that lie there and smile and play with things contently. My baby was a nonstop scream machine that needs constant contact and stimulation, unable to play by himself longer than a few minutes at a time.

Then, as a toddler, he had massive tantrums and meltdowns to where he would tear his own hair out while screaming. He would do this when he couldn’t complete thing the way he wanted- like hop on one leg four times before going in the house. I thought it was some kind of stubborn toddler thing and he wanted to complete a personal challenge. But that was just the start of his OCD issues that continue today, often with the requirement of completing something four times.

Just Ignore It

My son’s tics started at 4-years-old. It was a verbal tic- a little cough and grunt. I thought he had a lingering cold, and then I thought it was allergies. He finally stopped doing that one and moved into physical tics that started with blinking, then led into shoulder shrugging with a face grimace. The blink also involves a sort of grimace.

There’s been a myriad of other small motor tics, and every year when I brought this up at his Wellness Check, I was told to just ignore it and hope he grows out of it. On our last visit at his 8-year check, I mentioned it was still happening and involves a LOT of other tics now, and I was given a pamphlet on tics and more advice to ignore it.

My son is now squeaking every few minutes and making little noises in between. The squeaks are sometimes quiet and sometimes very very loud. We can’t ignore this anymore. So, I made a doctors and appointment and went in prepared with a list of all the tics he’s gone through and his various OCD quirks. As someone diagnosed with OCD at 30, once I realized what he was doing, it was easy to recognize the OCD patterns.

The Official Diagnosis

I was relieved that the doctor took all my concerns seriously and no longer told us to ignore it. She asked a lot of questions and observed my squeaking son, and we walked away with a diagnosis of ADHD, OCD and Tic Disorder.

Tourette’s is diagnosed after someone has two or more motor ticks and one vocal tic for a year, with onset before age of 18 years. While my son has been doing a whole variety of tic both motor and vocal, the doctor said we’d need to see the neurologist for a Tourette’s diagnosis.

So, we got the first available appointment for the neurologist- in September!! And the first available appointment for the psychologist is in March. It’s crazy how backed up the healthcare system is. The psychologist will be evaluating him for Comprehensive Behavioral Intervention for Tics (CBIT), and we’ll be starting that if he is a good candidate.

He was prescribed Zoloft to help with the OCD, and they said it may lessen the tics as well since they intensify with his anxiety. He’s been on it almost a week now and I feel like the tics have calmed down a bit in the last couple days and I’ve noticed less hand rubbing. But also, he’s been relaxing on vacation and not stressed out. Going back to school and doing homework will be the true test to see if it is helping.

So, What Now?

I had never heard of a 504 Plan before a couple weeks ago. Now I’m putting all the in motion and setting up a meeting with the school guidance counselor and psychologist. A 504 Plan is a school plan for students with disabilities that gives them equal access to learning and removes barriers.

All this has been weighing on me heavily. I keep trying to remind myself that he’s healthy and happy and we can work through these tics and things. But when I try and research Tourette’s and tics to educate myself, I end up crying when I see kids doing what he’s doing, but on a more intense level. I worry it will get worse.

Last night before bed, I heard him doing a “fa, fa, fa” noise, which is a common thing I had seen on the Tourette’s videos and am hoping he doesn’t start that one. I worry every new odd thing he does is a new tic. I want to educate him on the tics, but also afraid to show him the videos because I worry it may trigger new tics when he sees others doing it.

Worrying about all this is cranking up my own anxiety/OCD issues and I’m trying hard to manage all that so I can be in a stable mental place to help my son. I have an overwhelming urge to crawl up in a little ball and wish it to all just go away. Of course, I know that won’t help anything. So, I keep moving forward.

Right after I publish this, I’m off to set up the 504 meeting and find out what our options are for helping him have a better school experience.

About the Author

Candy Keane is a digital content creator and long-time cosplayer, most well-known for being on the cover of the Star Wars documentary Jedi Junkies. After making costumes professionally for over a decade, she now writes about geek culture and mom life, and continues to cosplay for fun, while sharing her love of costumes on Instagram @SewGeekMama. Her first children’s book, I’m Going to My First Comic Convention, was published in 2020 and won a Story Monsters Approved award for Excellence in Literature.

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