Tourette's Syndrome

I've been meaning to write something about Tourette's for the longest time. With the annual Charity Walk coming up in June, I was reminded to get writing. Unfortunately, society as a whole has put a negative spin on a very devastating neurological disorder. There is no cure, and for those living with the condition, it can be a daily challenge. It is especially difficult when societal ignorance creates a stigma for those afflicted.

My husband of almost twenty years (August 29th) and my sweet little eleven year old son both have Tourette's Syndrome. Luckily, our oldest son and three daughters do not have the disorder. It's hard when your child comes up to you and asks, "Will they come up with a cure soon? I can't stand it any more, mom."

Julian in Cuba (Feb.2012)

Tourette's is rarely what is portrayed in movies. Most suffer from uncontrollable tics such as throat clearing, repetitive actions, and repetitive sounds. These are involuntary, which means the person realizes they've done something at the same time as anyone else in the vicinity. It does NOT affect intelligence. Julian stills surprises me with his skills in math and science.

My son has come home crying because it is so frustrating for him, and even teachers don't understand what he is going through. I've had to go to the school on numerous occasions to raise a little hell and enlighten the staff with medical literature. My husband has lived with this his whole life and hates to see his son go through the same battle—one that is life long.

There are numerous jokes going around, all make me cringe, but I don't blame individuals because most are unaware of what Tourette's Syndrome is. You can just imagine how this could affect a person on a job interview (it increases with anxiety), trying to 'fit in' during the school years, or court a girl. Imagine being the brunt of cruel jokes on a daily basis. It filters into every aspect of a sufferer's life, and there's nothing they can do about it.

Me and Marden (Feb.2012)
Love this pic!

Anyway, I have two more contracted books to complete, but starting in May I will be writing a western menage romance with a hero suffering from Tourette's Syndrome. I hope this will help spread some positive light to an audience that may not be informed otherwise. I'm very excited about the project, and I hope I do it justice. I plan to donate part of my royalties to the Canadian Tourette's Foundation.


flchen1 said…
Stacey, first, thank you for sharing about Tourette's--getting everyone educated is definitely a good step towards understanding. And wishing you and your family the best as you live with Tourette's. Julian looks like a stellar young person, and what a blessing that he has his dad to look up to and to offer support and guidance and understanding as he grows. And yes, I love that photo of you and Marden! :)
Lisa Kait said…
Thank you for writing about this, stacey. My husband and I watched a documentry on Tourett's Syndrome and it is NO laughing matter.We have a son that has Autism and I understand the struggle that you and your family go through when people are cruel. I am really looking forward to your book with the hero that has Tourett's Syndrome.
Hello Stacey,

Thank you for this wonderful post! My son, almost 14 now, has had Tourettes for almost 4 years. It started out with the throat clearing and although that's still there, he's developed the other symptoms you've mentioned above as well. Some of them worse than others.

Education is key, and you're doing an great job getting the word out. More people need to read your post. So many do not understand the pain and frustration these kids go through. I wish Julian the best. I have no doubt he's an amazing kid. (((HUGS)))
Stacey said…
Thank you, Fedora and Lisa!

Jen, I think Julian started around 7, and it has become worse since then. Some months/tics aren't as bad as others.

I'm here if you ever need a shoulder :)

Thanks for sharing. The book will def be on my to buy list :)