The First Step | part one
We found out last week that Utah *most likely* has Tourette Syndrome.
He’s a month away from being 8 years old. It’s apparently more common in boys and typically starts between ages 5-7, and is diagnosed between 8-12. We aren’t sure yet about the specifics or exact severity. We are waiting for an appointment with a pediatric neurologist to find out more.
The Grinch
I took Utah to see the new Grinch movie a few Friday nights ago. The boy sitting next to him, probably 9 years old, noticed Utah’s little cough/throat clearing sound and started to get annoyed.
You know how it goes — when someone else notices something that you’ve just gotten used to, it becomes bigger and more noticeable to you. He was doing that almost constantly. Literally once every 10-20 seconds, if not more often. It was shocking.
After the movie, Utah fell asleep in the car on the way home. My husband, Neil, welcomed us home as I pulled my car into the garage. I told him Utah fell asleep and asked him to put him in our bed — a rare treat, for us all. So, he carried our sweet, sleeping boy to our bed & tucked him in gently.
I married my high school sweetheart. Neil and I have been together since 1999 and married since 2005. We started out as musician buddies. He wrote & I sang. Back then, we spent our free time getting into new albums together. We’d blast an album from beginning to end on his massive speakers in his tiny apartment and would read along to the lyrics. It was heavenly. The good old days.
The Couch
Once Neil tucked Utah into our bed, I asked him to come listen to a song I’d found and had quickly become obsessed with. We sat together, cuddling & cozy on the living room couch. Safe. I suddenly had the urge to look up what the symptoms were in kids with Tourette Syndrome. I’m not exactly sure why I knew to search for that specifically…I just did. I found a site with a ton of information and started to feel so overwhelmed with the realization that this was totally what was going on.
I started thinking about this strange neck thing Utah had been doing since he was about 5 years old. He’d stretch his neck and chin up and out. I always just assumed it was a weird little quirk of his.
Then, the coughing thing that had happened at the The Grinch movie. That had been going on for about 2 years. It’d gotten more frequent over the past year though, for sure. I know I had mentioned the little cough before to his pedi at regular check ups, but we all assumed it was just allergies. I’ve always had awful allergies. I figured he’d inherited that unlucky trait from me…
Tears began streaming, hot, down my cheeks. The gorgeous music continued – it’s a 9 minute long song. I handed my phone to Neil and whispered through sobs, “I think Utah has Tourette Syndrome.”
Neil took my phone from me and held me tight. He was quiet & pensive, as usual. But he was worried too. He understood the severity of it and planned to start researching the next day.
I fell asleep thinking about the worst things I could. I imagined Utah being bullied relentlessly. I even imagined him being the town vet (his dream) and being known as “that weird animal doctor that has those weird tics”. I allowed my mind to run wildly. It was awful.
I stared at his beautiful, calm, restful face and body and wished it was all a misunderstanding…a nightmare that I’d wake up from soon.
Reaching Out
The next morning, I posted on my personal Facebook page asking any friends of mine with experience in TS in kids to contact me. Quite a few did. Some teachers, some parents. A friend in California messaged me and said her son, 8 years old, was diagnosed with it just this year. We spoke a lot, and it helped so much. She sent me videos of her son’s tics. I managed to sneak a few of Utah tics and sent those to her. We both couldn’t believe how much our kiddos reminded us of each other.
Utah’s Tics
Utah’s tics are mostly physical, with a few that are considered vocal.
• Throat clearing & little coughs (those are vocal)
• Neck stretching
• Nose scrunching
• Eyebrow raising
• Nose sniffling (also vocal)
• Upper lip stretch (pulls lip down over his top teeth)
He just started a “splurping” sound a few days ago. It’s still here so we’ll see if that one sticks around.
They are definitely more pronounced & frequent with excitement, relaxed screen time and nervousness/anxiety. My friend from California pointed out when her son’s tics are most frequent. She said sleep, or lack thereof, had a massive affect on his tics. Also, screen time when he’s just relaxing, watching a video, TV or movie.
Right away I thought about the night we saw The Grinch. It was a Friday so he had woken up for school that day at 6am. The movie started at 7pm. He had been awake ALL day. AND we were relaxing in front of a huge screen. So…yea.
Making the first appointment
When I called the pedi to make an appointment 3 weeks ago, I was hardly able to even squeak out the words, through heavy tears, “We think he has Tourette Syndrome” when the nurse asked what was going on and why he needed to be seen.
Talking about it, with a select few friends, has been so unbelievably helpful. It’s like anything else — the more you speak up and talk about it, the less power the fear has over you. And that crippling fear begins to dissipate a little.