JERKING ALL THE WAY THROUGH TOURETTE SYNDROME

I think growing up I always felt different. Never quite fitted in. My father and brother have Tourette Syndrome. I believe I have some elements of it in a mild manner. Neither of them swear (yes the stigma produced from Deuce Bigalo is still there). They have motor tics and vocal tics.

Today there tics are a lot less obvious than they were when they were younger. Obviously I didn't grow up with my dad but i did with my brother. It was at the least to say, hard.

My mother recalls that from the moment my bro was born he was hard work. The baby that never slept. Was never settled and content. As a toddler he was obsessed with any and all electronics, from the TV to the PowerPoint. He didn't go to sleep with a blanket or fave soft toy like most kids, he slept with a double adaptor! (For those who don't know, that's what you plug into your electrical outlet to allow more power points). So yeah, he was far from the norm from a very young age.

Although successful now, and happy. It wasn't always that way. Growing up, he hated me. Or that's how it felt. I was an easy going kid. bubbly and active. Always wanting to play with someone. My entire street was full of boys except one girl who was such a nancy she was scared of butterflies. I played with the boys when I was allowed. But that's the thing, i was never allowed. I was sworn at from a young age told to piss off. that I'm an idiot and that he wouldn't play with me. It didn't stop me, id tag along anyway if i could. I learned pretty quickly how to keep up with the boys on my bike. They would always manage to run away from me and loose me though.

It is interesting reflecting back now as an adult, I know most kids are this way with younger siblings, my own kids are. But it was different, it was like he had a seething hatred for me. It was only when he wanted something that he was nice to me. The next door neighbour and him talked me into spending all my pocket money at the local milk bar on lollies and ice creams! I was eager to please if it meant i would be able to hang out with them. Mum busted them! pretty sure the wooden spoon came out that day!!

I look at him now and find it bleeding obvious that he also has Asperges. Not that he has been diagnosed as there is no point, but it does make me understand things differently. My brother still treats me in a similar manner to this day. Perhaps a little less childish but not much.

Think about his perspective for a minute though, here's a kid that cannot keep his head arms and basically his body from jerking around in constant movement. He cannot sit still like a normal kid. He makes noises and sounds that he can't control. The pressure inside you when you try to control it is unbelievable and inevitably you make the movement anyhow but ten times worse as it is realising the built up pressure of trying to control it. I'm not going to lie, he had it tough and was picked on.

Dad worked long days and only had Sundays off. He too suffers from these body tics. Socially for both of them, to leave an environment where they felt safe and comfortable having their tics was a strain. People don't always mean to be rude but often they are. The self consciousness of knowing people were staring and wondering whats wrong must have been horrible. I have never felt embarrassed or ashamed of either of them for their tics. This did mean however, mum and dad had a very small social circle and would rarely go anywhere. We didn't have people over every weekend like I do, as kids we didn't have family friends outside of school friends. Even then neither my brother or I had many friends.

Tourette Syndrome is still not very well researched. It is known that it's a condition of the brain where the sparks lets say, function differently than you or I. They are not sick, they do not need to be treated as though they are broken. It is not a mental impairment. In fact you will find the opposite, a lot of people who have this syndrome are regarded as highly intellectual. Of course the physical side of it can be hard to manage and their are cases of people that have unbearable tics that effect their daily life. For this there is treatment and it's amazing!

So although I sympathise for my brother a great deal and wish that he hadn't been dealt this card in life, I can't change that. I do however feel as though I got a raw deal too. I made weird sounds at school and had little movements. I was picked on for it and made to feel as though I was retarded or strange. People didn't bother to get to know me. I came home at the end of the day to my brother. Not a friend, a sibling that I could stick together with and make it okay. Just another jerk in the path of my life.

I know this sounds harsh, and I am not having a whinge and asking for you all to feel sorry for me, I'm just calling a spade a spade. I have the most amazing and supportive group of friends in my life now and I am conscious of how my kids treat each other. At this point there have been a few slight signs in the kids that may suggest they could have tourettes but for the most part they are happy healthy normal kids. I hope they never have to experience the crap I did. I hope they are always a team and stick together. I am a very different mother than mine was, not better or worse just different. Perhaps that will make a difference. perhaps not.