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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

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