Today my heart is hurting. I want to talk about Tourette Syndrome – a subject close to our family. Some of you may have it or know of someone who has. Some of you have heard of it. Some of you have never heard of it. (There’s a website at the end of the page for those who wish to embark on a course of discovery, or you could google it yourself….)
My teenage son has Tourette Syndrome. Of course, we have known this for quite some years. He hates it. I hate it…..more so ‘cos he hates it. If I could take it off him and carry the burden myself, I would do it in less than a heartbeat. And it is a burden. Can you even imagine how incredibly irritating and disturbing it must be to be shaking and twitching and flicking and clicking and snorting and sniffing and blinking rapidly and having to make all sorts of facial, neck and limb movements all of the time? Every waking moment. No respite. It only stops when he sleeps.
That has gotta SUCK – BIG TIME!!!!!!
I tried to imitate him once. Just to try and walk in his shoes for a while and gain some understanding of what he was going through. I shook my head. Twitched my eyebrows. Flicked my head. Blinked rapidly. Wiggled my mouth. Snorted. Made faces. Tried to do all of this while watching TV and reading a book. I lasted 12 minutes. Longest 12 minutes of my life! Had a splitting headache and a crook neck afterwards. But my boy does this – all day, every day. He even manages to play computer games, watch the telly AND read his books. How GOOD is HE!!!
But here’s one of the down sides of Tourettes. People can be cruel. Children and teenagers can be cruel. Even their mums and dads can be cruel. I gotta tell ya that I expected a whole lot better than sarcastic remarks and horrible facial expressions from some of the adults in our community. These people stare and point or nudge their companion and whisper and make fun of someone else’s disability or disorder. And when I see this happening or my son tells me that kids have been chucking off at him at school – it breaks my heart.
And then it makes me REAL MAD!!!!!!!!!!!!!
But I have to believe that, in general, most people are not horrible, nasty to the core, goblins and instead are just ignorant and uneducated about Tourette Syndrome.
So, I’ve put pen to paper in the hope that every person that happens to read this will find the motivation to become educated – along with their wives, husbands, partners, their children, their neighbours, their friends, their school-mates, their work colleagues – about Tourette Syndrome. The people who suffer from this disorder are NOT mentally handicapped and while some may learn to suppress the symptoms for a short period, they’re certainly NOT able to stop it from happening indefinitely!
I ask, plead, beg – whatever – you to become more informed about Tourette Syndrome. Make my son’s life a little easier by telling your kids or students (if you’re a teacher) that he’s not a “retard” and that it’s totally unacceptable to call him one! My son looks “different” and that makes him a target for all sorts of nasty school yard pranksters. I know it upsets him. It upsets me enough.
Will you pass this on?
I hope so.
Sandy
For more information on Tourette Syndrome, copy and paste this link into your browser…..
http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm
It makes me extremely mad just reading about people’s cruelty and I don’t have to have my heart broken looking at him every day. Growing up with a Dad in a wheelchair I know all about sidelong looks and comments. It made me just want to punch everybody…….
Hey Carli – I must admit to feeling like I want to smack a few heads together! I tell my son to ignore people, explain that they don’t know any different but the other side of the coin is that I get upset on his behalf. He actually copes so much better (mostly) than I would be able to – he’s my little hero!
hi sandy, most of the blogs, comments and other info on the web is geared toward young people with tourettes. i have had it since age 5. i was not diagnosed till age 27.
i suffer everyday with the pain from my tics. i am now 54. i have a lot to teach to young people and especially their parent about tourettes. yes i know every case is different but when you get down to it, every case is the same.every person with tourettes ,in their mind, feels that it is bad. there are no degrees of tourettes. you have it or you don’t. as with anything in life, attitude is everything .attitude is a state of mind. people do not overcome obstacles, they control them.you can never have a bad day, you only have bad moments in a day.this is what has brought me this far in my life.
thank you for reading this.
dan s.
Hi Dan, You have lived a long time with Tourettes and I can only imagine the suffering you have felt during your years of living with this disorder. My son was diagnosed at age 7 – with Asperger’s Syndrome and Tourettes, I have to say I was horrified because all I really knew about Tourettes was that it was a disorder that made people swear terribly and make the most anti-social gestures etc (coprolalia) – but what I didn’t know (until I became educated about it) was that there was varying degrees of affliction. You’re right Dan, most of the blogs/web info does seem to be geared more towards young people and speaking as a mother of a teenager with Tourettes, I have felt the need to make people aware, globally, of the struggles that our kids are going through. I know how confused and hurt he has been and continues to be by the comments of nasty and/or unthinking kids and adults. Education is the key to better understanding of this disorder – as it is with everything – and slowly the message is getting out there. I really like your positive attitude Dan, and I believe you have an enormous amount of personal knowledge to pass on – do you have an information blog/website etc where you can get your message across and provide valuable info to other people? My son says he will happily keep his Asperger’s but he is desperate to offload his Tourette’s – and that makes me feel so terribly helpless, as all I want to do is “fix” it for him and can’t. Thanks for your comment Dan and God bless!
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