Some of you know me from reading my book, Happily Ticked Off. Others of you found me by Googling “tics and Tourettes” and voila — here I am! Others of you might have found your way through a Tourettes forum or randomly googling “Misophonia.” Either way, I’m super stoked you are here.
Tourettes and My Son
My son was diagnosed with Tourettes when he was 4. Tourettes is a disorder that causes uncontrollable verbal and physical tics that change in nature and last up to one year. My boy’s tics never included cursing (which happens in only 10% of kids) but did include quite a deal of vocal sounds (gulps, clicks, throat clears, coughs) and physical movements (neck stretches, arm thrusts, neck rolls, eye blinks).
He’s now 17 years old, 6 foot 6, and a year and a half from heading out to college. For a long time I wrote about my adventures with this unknown disorder on my blog, HappilyTickedOff. Armonia Press even published a book about it which, to be honest, is one of the best things I’ve ever written. I didn’t get rich off of it, but every time I get a small residual check, or a tired mom from Kansas writes me to tell me that I made her laugh and cry over her pea soup or in the carpool line, I’m beyond thrilled.
Why I Ceased Writing About Tourettes
For a while my son told me to stop writing about him altogether. Like my drinking days, it was okay until it wasn’t. And so, just like I honored my kids by getting sober, I did the same thing when it came to writing about him.
I continued to write on my blog the past five years. In addition to that, I also dipped my toe into the water of education. I became a special ed aid and then a substitute teacher. But by far, my greatest teacher has been my two teenagers. And while I write quite extensively about my daughter, such as this post, but this particular article? It’s all about my son. And it was his idea, which shocked the hell out of me.
Why I Started Writing Again
“Mom, if you want to write about me and my Tourettes again, it’s totally okay,” he told me one day while I was making him an after school snack. By “snack” I mean “meal.” And by “meal” I mean four gluten free veggie tacos with a huge side of guacamole.
“Why is that?” I asked him, trying to sound cool but on the inside more thrilled than a new Grace and Frankie episode appearing on Netflix. I’ve missed talking to other moms about this often misunderstood syndrome.
“I am super happy with myself,” he told me. “I have so many friends. I’m loving my computer programming.” He went on to add, “I guess because you’re okay with me, I’m okay with it.” And that last piece, my friends, is why I’m writing this article.
I Was Not Okay with His Tourettes for a Long Time
Before you judge me, I want to be clear that I didn’t want to not be okay with his syndrome, but I struggled. Part of this is because I was not confident in myself. I worried that I would be judged. And I was worried about him and how he’d be treated. (Yes, he was bullied a bit for noises he couldn’t control.) But most of all, I had a condition I didn’t know I had called Misophonia where certain noises drove me nuts. Combined with a marriage on the rocks, and drinking more than I cared to admit (until I had to admit it) the grunts and squeaks sometimes put me over the edge.
As I mentioned in this article on Misophonia, our relationship was super strained with all the “fixes” I tried to get him to stop making vocal sounds. I tried everything from:
- Special diets
And on and on. He went along with the program from ages 9 to 13, but the rubber hit the road for me when I realized:
- He doesn’t want me to fix him.
- He didn’t mind his Tourettes
Just like drinking, I had to give up my need to fix him or our relationship would be doomed. So I did. Here are just a few things I implemented over the past 4 years that changed our relationship from one of strife to one of safety and calm. (And, my friends, I’m convinced this is a huge reason why he is doing so well today.)
How I Gained a Safe Relationship With My Son
- Questions: I ask more questions than I give commands. If I’m not sure about his grades, I ask “Why is your Chemistry at a C?” instead of demanding, “Why are you not at an A?” Lack of stress has greatly reduced his tics, too.
- Positivity: I keep my negativity to myself. If I’m frustrated with a writing project, or a lack of a writing project, I leave that outside before I walk in the door. In doing so, I’m not bleeding all over someone who never cut me.
- Listening: I stopped talking so much about myself and just asked about him. Often times I’d just sit on the couch with a book. If he came by to read with me, great. If he didn’t, that was fine, too.
By just being a still presence I was creating a safe harbor for him to just be him, tics and all.
4. Self-Improvement: In working on myself, and realizing what I needed to change (less drinking/more writing) I stopped trying to live through my son. I mean, it’s one thing to want your kid healthy for him. But I was doing it for me. And friends, that sucks.
5. Laughter: We laugh a lot. He is the worst joke teller in the world, and also hilarious. Ex: “How do you call someone who collects phone books?” Answer: “You don’t. They call you!” Stink (his nick name) and I pun like professional ping pong players. We have Scooby Doo marathons. And we trade ridiculous memes over text. Each example is super small, but it’s the little intentions that build a strong relationship over time.
6. Forgiveness: Last year, as part of my 12 step program, I made an official amends to him for asking him to change his tics. I cried. He listened. And he honestly, truly, forgave me. I also made a promise to never ask him about his tics again. Because we have gotten so close over the past four years, he believed me. And I’ve stuck to my word.
My Son Barely Tics Now
I’m writing this post to tell any of you scared mamas that not only is my son okay emotionally, he’s okay physically as well. He rarely tics these days. Some of this is because he is 17 and tics do, indeed, subside. But some of it is also because he is not stressed. Nothing, and I mean nothing, is more important to me than how my son feels about himself. If it means me backing off and letting him go to a Junior College instead of a 4 year university so he can navigate high school at his pace, I do that.
In the end, more important than curing Tourettes is my son’s keen awareness that his mother accepted him 100% for who he was in his soul. Everything else doesn’t matter.
I am proud to say that despite making mistakes raising this beautiful boy, I have no regrets. I, like everyone else on this globe, am a human being. I wasn’t raised by perfect parents. I got bullied in school by kids who were also not perfect.
Right or wrong, I placed many of my unhealed issues onto my son and raised him through a lense of fear. But I’m not doing that now.
Your Child Will Be Okay — Especially If You Are Okay
I want to tell you that I know how hard it is to get a diagnosis you were not expecting. But I also want to remind you that your child is not his or her label. He or she is their spirit. I can 100% promise you that if you nurture their spirit, far more than focusing on their disorder, everything will be just fine.
Think of Tourettes as a giant invitation to a party on life’s terms. It might not be easy, but if you allow it to be, it just might be the best adventure you’ve ever been on.
Want to Write Your Own Memoir? Contact Me!
Are you a writer who wants to write a memoir? I can coach you! Reach out at Andrea.Paventi@Gmail.com or find me at my blog www.happilytickedoff.com. You have a story and I can help you make it happen!
Until next time,
My book is available on Amazon. (Note: It’s a special ed journey… your kid doesn’t need to have Tourettes to relate!) Follow me on Twitter@AndreaFrazerWrites or on Facebook. )
6 thoughts on “Everything I Learned About Parenting I Learned from Tourette Syndrome (An update on Stink who is, gasp, 17!)”
This is so inspiring! Thank you 😊☺️😊
Pilgrimage, Thank you for reading here always! It means a lot.
Your child is not his or her label/diagnosis–this is something I’ve been working on, with some success. The same also goes for me. After my diagnosis, I spent way too much time labeling myself and trying to prove I was different. It’s all settled down now (with the help of OCD medications) and I’m far more relaxed – and therefore ticcing less as well. And if I can relax with all this crap going on, I must truly be better.
I always forget you have TS! But I never forget what a great writer you are. So glad you are doing well and sharing your world with us! You really are good.
Beautiful post, Andrea. So happy for you and your lovely family!
Hi Adelia – So much for walking after church! Sigh. Will call you this week. Hope you are well.