How We Got Here

We were so lucky to get a diagnosis so quickly, and so lucky that our doctors took us seriously and took our concerns and history into account.  I've read horror stories about people waiting years for a formal diagnosis.

So how did we get here?

Honestly, I wasn't the first person to notice.  Tourette Syndrome was so far off my radar that I'd never even considered one of my kids having it.  Half the time I forgot that I have it.  My tics are on the milder side and they're so second-nature to me now that I don't pay much attention to them unless someone else is bothered by them.

We take a big family vacation each summer with my extended family.  On day 3 of our vacation this year, my grandmother pulled me aside and whispered, "I noticed Gerry's been scrunching up his face a lot.  You might want to get that checked out."  I didn't think much of it until my mom mentioned a similar thought the next day.  That night, I noticed him really ticking for the very first time.  We were standing in line for a ride on the boardwalk and he was scrunching up his eyes and sniffing.  I took a video of it.  Later on, while we were all going to sleep (the 5 of us share a bedroom on vacation) he kept sniffing and clearing his throat.  And, just like that, it was like a switch had been flipped and my mind was flooded with memories of him doing these things over the past year or so.  All the times we'd yell at him for "winking" at us when we were trying to discipline him...all the times my friend who drives him to school would comment that it was so cute how she'd look in the rearview mirror and he was always winking at her...all those times I was sure he was coming down with a cold because he'd been sniffling so much, only to wake up perfectly fine the next morning.

He'd been ticking this whole time.    

I searched trusty ole Google and, sure enough, one of the first things to pop up in a search of Tourette Syndrome is that it's an inherited condition.  Closely followed by the fact that males are affected 3 to 4 times more than females.  Boom.  Two strikes against him right away.

I watched him and I thought about it for the rest of our vacation and as soon as got home I did my homework.  I emailed his kindergarten teacher to ask if she had noticed any signs of TS in the classroom last year.  I made an appointment with our pediatrician.  And I took video after video after video of him.  We saw the pediatrician less than a week later and he referred us to a pediatric neurologist.  "To be quite honest," he said "Gerry's only the second kid in this practice to have Tourette's.  I'm going to have to do some research."  Three weeks after that, we had a formal diagnosis from the neurologist.  

Being the parent of a child with TS is a completely different ballgame than just being someone with TS.  When it comes to me and my health, I tend to take a more irresponsible, "I don't need to see a doctor unless I'm on my deathbed" approach.  But when it comes to my kids, I want them fixed and I want them fixed yesterday.  Since getting a formal diagnosis back in August, I've done nothing but read and research TS in kids.  The Tourette Association website has had more traffic from me in the last two months than they probably have all year, and my Amazon cart is filled with nothing but  books on parenting the child with TS, TS and the Classroom, and The Special Needs Family.  I can't help but notice every little tick and twitch, and I want to shout at everyone who ever made me feel bad that "Ha!  See?  He's not a bad kid and I'm not a bad parent, he has a neurological condition!"  I know more about IEPs and 504 plans than I ever wanted to, and I'm pretty sure that by now I could teach an entire in-service on TS to schools.

I don't know what's in store for us.  I know that every single person's experience with Tourette's is different so I can't really use my history with it as a guideline or expectation for Gerry.  I know that, having it myself makes me more understanding and empathetic to what he's going through and what's to come.  But knowledge isn't always power and, in this case, I almost wish I didn't know as much firsthand as I do. I think there's going to be a big learning curve for our whole family, but I know we're up for the challenge.

Here We Are

Welcome!

If you know me even a little bit, you know that I love writing.  It's how I process things, how I calm myself, and how I "deal" with things that other people might talk about with their therapist.

In the interest of keeping this first post short and sweet, I'll just lay out the facts of this blog for you:

• my son, Gerry, was diagnosed with Tourette Syndrome at age 6
• we were lucky enough to get a quick formal diagnosis; most families aren't
• I was also diagnosed with Tourette Syndrome as a child
• we have no freakin' clue what we're doing

So that's us in a nutshell.  We're still very new to this diagnosis, and we're quickly learning that not every case is the same.  Not even close.  Feel free to follow along while I ramble and navigate us all through this phase in our lives.