Today my 7 year old son stood up in front of his class and told them something very personal and very brave. I sit here tonight as the proudest mum in the world and am writing this to show support for my amazing little boy and all other children going through the same thing as him.
When my gorgeous boy had just turned 4 years old he became seriously ill with an unexplained virus. After many tests it was concluded that he had suffered a severe reaction to the STREP virus and when his antibodies tried to attack the virus, they also attacked his brain. Overnight my son started to experience a number of vocal and physical tics and some autistic behavioural traits.
There was a time when we thought our little boy would not recover, but over the years we have seen him get stronger, physically and mentally. In 2013 we finally got to see a 'specialist' who gave me the diagnosis that my son had tourettes and elements of autism.
The minute people hear the word 'tourettes' they think of it as the swearing disease. Wrong! In actual fact only a very small percentage of people with tourettes display the trait of shouting out swear words. The reason we all think of this is all thanks to the media. They want to shock people, they want to grab the viewers attention! It would be far too boring to focus on most tourettes sufferers so they pick the ones that they think will provide the best entertainment for viewers.
So, what is it really like for someone with tourettes? Well, the way my very articulate son explains it to me is he gets this feeling inside him before he's going to do a tic and if he doesn't let the tic come out it gets quite unbearable and even painful. Once the tic has been performed, the feeling goes away. Some days he may have just a few tics, other days he may get them every few seconds. It can be embarrassing, it can be frustrating and it can be exhausting.
Tourettes sufferers can feel very alone and isolated and feel like they are the only person in the world experiencing tics. They would be very wrong. In fact, statistics now show that 1 in 100 children have tourettes. That means that if your child is in a school of 300 children, there are likely to be at least 3 children there with tourettes and they may possibly be undiagnosed.
My son is one of the kindest, most sincere 7 year olds you could ever meet. He has a fantastic sense of humour and takes his big brother role very seriously. He is overcoming the autistic traits that he has day by day. He will always be very rigid about what is right and what is wrong but who is to say that that is a bad thing? His confidence with other children is growing by the second. Last year he would sit alone on a bench at play time as, although he wanted to join in with his peers, he just couldn't bring himself to do it. Now, he is playing bulldog with them on the playground and running an 'ant club' at lunch time. He stood up at the front in his school play this week and sang his little heart out and today he ran his first ever cross country match with spirit and determination. He may have a little something called tourettes but that will not stop him in life. He will succeed in whatever he wants to do as tourettes does not define him.
Today his class were sharing things about themselves that were a little 'different'. No-one told my son to share his tourettes, he could have quite easily said something like he is double jointed to play it safe. The fact that he had the courage to share something so personal at such a young age is admirable and brings tears of pride to my eyes.
I wasn't initially going to mention my sons tourettes in my blog as I didn't want to invade his privacy. However, after what he told me he did today, I thought what an inspiring young man he has become and if we can help other families affected by tourettes by writing this then we have to do it. It was not my decision though, it was his. I respected him and I wanted to be led by him. He wanted this piece to be written in the honest frank way it has been so I dedicate this to him - my gorgeous, courageous son who I love to the moon and back. xx