The New Jersey Center for Tourette Syndrome would like to welcome accomplished national blogger Andrea Frazer to TSParentsOnline. Frazer is a produced television writer who just finished up a three-year marriage column with Good Housekeeping. She also wrote five days a week for three years for the national parenting website BabyCenter.
It was this blog post on Tourette Syndrome with 162 responses that prompted her to start her own website where she writes three days a week on tics. Come say hello to her at Happily Ticked Off and share your own experiences!
My son was diagnosed with Tourette Syndrome at 4. What began as minor shoulder shrugs and blinks morphed into head nods and throat clears over the course of six months. While none of his symptoms ever reached what I’d call extreme, my reaction certainly was. I was devastated. I could not stop crying. I was heartbroken. More than anything, I was confused.
“I don’t understand,” I’d wail to my husband the moment he’d come home from work. “One moment we’re taking him to the park and playing with finger paint, the next minute we’re visiting neurologists and getting him an MRI to rule out seizures or tumors. It isn’t fair!”
My husband, to his credit (and my complete and utter bafflement) was cool as cucumber. To him, our son was still “Stink:” lovable, quick to laugh, silly, empathetic and bright as hell. “A few coughs aren’t going to diminish his future,” he’d assure me.
“No, a few coughs are no big deal,” I’d quip back. “But what if it gets worse? What if he starts cursing and screaming and has behavior problems so severe we have to home school him and we can’t take him to a movie for fear he’ll ruin every other person’s experience because he’s JUST SO UNCONTROLLABLY LOUD.”
Like I said, I was not in a good place.
The internet did not help. Everywhere I turned, I found “informational articles” and “well intentioned but ultimately dry and fear inducing ” blog posts about the worst kinds of T.S.. There was no doubt about it: My kid’s life was over.
And yet, more shocking than the original diagnosis, was the truth: My son’s life was not over. Sure, he had a few tics. But sometimes they would go into complete remission. Sometimes they would come back, but they were never debilitating. The only debilitating thing I encountered was my worry over what could be. When I started concentrating on what was, I was able to live more authentically in the present and enjoy my son for all the amazing qualities he had – qualities that no tics could erase.
Stink will be 9 on Jan. 1. After five years on this journey, I can’t say it’s always been easy. We’ve been through diet changes, naturopaths, allergists and even a counselor to give us some guidelines on raising a spirited kid. His tics are slightly higher than they were at onset, but they are nothing earth shattering. In best case scenarios, people have no idea he has TS. In worst-case scenarios, his eyes roll more than average and if people ask what he’s doing, he cheerily responds, “Oh, that? It’s just my tic!”
Stink remains happy, adjusted and charming as ever. As I type this post, he’s sitting with a class mate in our office – a classmate that has begged his father to drop him off to play with “his best friend, Stink.” In fact, when Stink was introduced to speak to his class a few weeks ago about “something unique about him,” this friend took me aside and said, “I know what is special about Stink.”
“You do?” I answered back. “What’s that?”
I was ready to hear about Stink’s eye rolls… his occasional humming… his light “ah ah ah” warble that took over his sentences for a month at the beginning of the school year.
His friend confidentially responded, “Stink gets a lot of ear infections.”
I laughed out loud. And it wasn’t my tic. It was pure joy at the fact that I have a son who is amazing. His life was not over. In fact, it was, and is, only just beginning.
@ Laura D – I am so glad that the NJ folk are putting up this blog. I love ACN, but this is so much more personal. I look forward to reading everyone’s input and getting support for myself and others. :)
I made my husband listen as I read some of your blog. (and some others) Especially the part “JUST SO UNCONTROLLABLY LOUD.” I can relate, my son has no “indoor voice” but your words are more like it.
Thank you for sharing.