This week marks the annual Tourette’s Syndrome Awareness week….
If you are a regular follower of My Party of 5 Blog, you would know that my son was diagnosed last year with Tourette’s Syndrome. Tourette’s Syndrome is a neurological disorder where a person has both involuntary motor and vocal tics. There is no cure. Some people grow out of it and some people unfortunately don’t and with age it can improve. And while there are prescribed medications to help reduce the severity of the tics, there is nothing on the market that suppresses the tics completely.
It’s been a long road to get to where we are today. It took 2 years for my son to be diagnosed and now 6 months down the track, we are still learning more and more about the condition. Each week sees a new tic and the art of patience and understanding has been learnt to its full potential by everyone who comes in contact with our boy.
I’m writing this blog to help spread the word on a disorder that lacks knowledge and understanding. Growing up whenever Tourette’s was mentioned, the first thing you thought of were the people who shout obscene language at any given time. Thank you to movies, that is how Tourette’s is portrayed. Although some people with Tourette’s do have those kinds of vocal tics, it’s actually not as common as you think. The swearing part of Tourette’s is a substrand of the disorder, along with repeating what people say and repeating one self over and over again. It’s also a spectrum disorder so can range from mild to severe cases.
My 10 year old son Bailey, has a mild to moderate case. On his good days he can be very mild with the odd tic evident here and there but on a bad day he can constantly tic both motor and vocal all day. This has a lot to do with how tired he is, how fatigued his body is, if something is causing him to feel anxious or if something exciting is approaching. Also a person with Tourette’s Syndrome usually always is diagnosed with one or more other disorders and for Bay he was diagnosed with Anxiety and Obsessive Compulsive Disorder before he was diagnosed with Tourette’s.
For a child or adult for that matter to live with Tourette’s Syndrome means they are living on an ever lasting roller coaster with many ups, downs and spinning twirls….and so are their families.
When I stop and think about my boy, he brings me tears and goosebumps at how amazing he is. He gets on with life every day just like you and I do. He puts on a brave face and takes on what this world throws at him and turns it into success. He is a bright boy (particularly with maths) and does well at school, he plays percussion in the school band and he is a fantastic footballer, basketballer and athlete.
He has this tremendous ability to be able to contain his tics and anxious and OCD behaviour at school, but this is quickly unleashed once he is back in his safe place…our home. But as his mum I can handle that. As long as he is doing well at school, maintaining friends and is happy, I can handle the rest! And between seeing a child psychologist monthly, attending group Tourette’s therapy sessions monthly, visiting a naturopath regularly and taking a variety of natural medications, all of this is assisting with allowing Bay to be the best he can be!
My son has Tourette’s Syndrome. He will tap everything in sight, shout out when you least expect it, repeat himself over and over again, repeat movie lines, tic for the majority of a snuggle but at the end of the day this brave young man is normal….just with tics!