At my therapy appointments since this has all happened, I’ve been able to talk more about it with my incredible therapist, Cassie. Each time it’s easier and during my most recent appointment, it was without the feeling of complete overwhelm, despair & deep sadness.
I’m so thankful for my tribe and for the strength I personally have to do whatever it takes to help my boy.
I took the Clifton Strengths test a few months ago (thanks Jen for hooking me up with that!) and found out that my top 5 strengths are: empathy, communication, discipline, activator & maximizer.
All really good traits of perseverance, sticktoitiveness, structure, transformation & loving one another.
I want to appreciate myself more. My therapist is helping me point out how my strengths help me through any difficulties I run into. She’s helping me build my self confidence and self love. It’s been so good.
Over the past few weeks, since The Grinch movie, I’ve been talking to Utah in small bits and pieces about what Tourette Syndrome is and what “tics” are. I’ve gently pointed out what his tics are, casually. I’ve explained what causes them to happen more frequently.
We’ve started something that we call “Reading Club” every day while Ani, Utah’s little sister, naps. Instead of watching TV, we read to ourselves or to each other. It’s interesting how little he tics when his brain is relaxed but “working”. Even when he is using a screen, like the iPad, but playing a game, his tics still happen, but they are less frequent.
We’ve changed Utah’s bed time routine to 7pm, instead of 7:30/7:45pm. Any earlier, and it’s just too little time awake with us. he’s at school until about 4:15, with the drive home.
A wonderful friend of mine messaged me and suggested that I do as she did when she went through a scary diagnosis with her sweet fur baby. She started a blog. She hoped that it may reach a few other people going through the same uncharted territory. Not only did that happen, but she also found an incredible amount of healing for herself through sharing her experience.
I suggested this idea to Utah the next day. I explained what blogs and vlogs are. I mentioned that there is a lot of info on the internet about Tourette Syndrome that comes from doctors, teachers and parents, but I hadn’t really found much from any actual kiddos.
He immediately spoke up and said, “I want to do that. I want to help other kids learn about Tourette Syndrome”.
My pride swelled and we set out on the process of figuring out a domain name together right away. I offered up tictocyadontstop.com but Utah wasn’t a fan. He said it sounded like a website about clocks. Okay, fine. Ha!
So, here we are.
It apparently takes 3-5 business days to hear back about the referral to a pediatric neurologist. The appointment with his pedi was on November 27th — 6 business days ago.
Waiting for this next step has been difficult. Waiting is always difficult for me. I want to get it done. Get it figured out. Do what we need to do. I’ll be calling them in the morning.
Utah is working on his first blog and vlog. He will be sharing it here soon. Please stay tuned for that.