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'I have Tourette's - please don't judge me'
NINE-YEAR-OLD Albie is used to being stared at by strangers.
He knows passers-by must think his behaviour is odd.
There are times he hasn’t been able to help persistently wolf-whistling at a packed holiday resort, shouting out ‘Nelson Mandela’ following news of his death and couldn’t stop saying Big Mac – at a carvery.
He is regularly unable to stop his neck rolling back or his face grimacing and sometimes his legs even give way and he tumbles to the ground.
That’s because Albie has Tourette’s Syndrome and he is desperate for people to understand his condition.
“I’d say to people don’t judge me.
“It can be hard having Tourette’s. If you’ve got a tic all the time it’s not nice because you’ve just got to do random stuff that you wouldn’t normally want to do.
It feels uncomfortable.
“But at the same time it can be good because you wonder what tic you are going to have next. I’d rather people laugh than look away,”
Albie said, who has learned to make a joke of the outbursts to diffuse any embarrassment and potential trouble they might cause.
Mum, Ruth Thomas, 42, a behaviour manager at Brambles Community Pre-school, knew there was something different about Albie when he was just five.
“He began screwing his eyes up then he developed a dry cough.
“Then he started doing that simultaneously. I thought something wasn’t quite right.”
Ruth had read about Tourette’s Syndrome and was adamant that was the cause.
However, undiagnosed, Ruth despaired as her youngest son’s behaviour spiralled out of control.
“He would come home, he’d be really angry, kicking doors, hitting his brother. You couldn’t speak to him. He was completely out of control because he didn’t know what was wrong with him.
“How do you deal with a child who comes to you at seven-and-a-half and says he wants to kill himself?”
Ruth raised concerns about Albie’s behaviour with various doctors and specialists but it was only last October that he received a diagnosis.
“It was tough. Getting the diagnosis was the hardest part."
Ruth says her lifeline was discovering an online community and a Southampton support group organised by Tourette’s Action, which helped improve Albie’s behaviour before he was officially diagnosed and supported by the Orchard Centre in Southampton.
Albie, says: “I feel more normal and I make good friends at the group. I say ‘Hi, I’ve got Tourettes, do you want to be friends?’and they always say yes because they’ve got it too and we can talk about our tics.”
Ruth adds: “Without Tourette’s Action I don’t know what we’d have done.
“He could see that there were other people ticing and everything became much easier for him.”
Most people associate Tourette’s with compulsive swearing and saying inappropriate things, but this is how it manifests in the minority of cases.
The key feature of the inherited neurological problem is tics – involuntary and uncontrollable sounds and movements.
The Thornhill Primary School pupil also develops pains in his limbs.
Ruth says: “It’s not just swearing, but his tics are very changeable. He could have a tic for a few months and the next day it will be something completely different, that’s how random it is.”
Mum-of-three Ruth tries to integrate Albie with other people with Tourette’s to help him understand the condition.
“He has met a boy his age who swears and a man with Tourette’s who was taking photographs of children and kept shouting out: ‘you are adopted.’
“Once you meet people with Tourette’s nothing surprises you. A lot of stuff people come out with is really funny and they don’t mind you laughing because they laugh along too.
“Now Albie seems to be much happier in his own skin. He comes across as confident and now he likes to talk about the fact he has Tourette’s.”
n Southampton support sessions take place at Pavilion on the Park in Eastleigh.
For more information search Hampshire TS Support Group on Facebook or go to tourettes-action.org.uk
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