MAY IS IGNORANCE AWARENESS MONTH

It’s also Tourette Syndrome Awareness Month. And sadly, the two go hand in hand.

I won’t lie. I was also one of the blissfully unaware a year ago. I had heard of Tourettes. Seen it in movies. You know, the odd guy who swears and twitches all the time. Hilarious right?

And then. A year ago. It knocked on my door.

My beautiful 5 year old boy began blinking really hard. Oh sweet we thought, Grandpa used to do that.

And then a few days later his head began twitching to the side. Next thing we were on our way to the hospital emergency room. We were on holiday at the time and had no idea what we were facing. It looked as if Griffin was having little seizures.

After many doctor appointments (there are 5 paediatric neurologists left in Johannesburg – no doubt they’re all in sunny Brisbane) in the weeks that followed, I heard the words:

YOUR SON HAS TOURETTE SYNDROME.

My heart broke. My world stopped. How could this be? What did this mean for him?

What the hell were we facing?

Basically Tourettes is categorised as involuntary vocal AND motor tics. Sometimes at the same time. Sometimes one at a time. Sometimes they’re worse than other times. They come and go. Change all the time.

What can be done about it?

Absolutely nothing. There are some meds, all designed for other scary things like high blood pressure, schizophrenia, parkinsons and so on. Each with a long list of awful side effects. None of which I would want to inflict on my little boy’s super-intelligent-growing brain.

What we do know about Tourettes is that it’s an anxiety disorder. 70% more likely to affect boys. Is very closely related to OCD, ADD and ADHD.

It has been a year since his first tic. And while Griffin has a very mild case of it today, we just don’t know what tomorrow will bring. Another big fat lesson for me to come to terms with: I can’t control everything. I cannot plan or predict tomorrow. But, what I can do is take the chance to teach the rest of you about it. Maybe because of it there will be one less sneer, or point, or stupid comment from strangers, teachers, friends and family.