Reaching new heights with Tourettes

THE SMILE SAYS IT ALL: Zarneo Baker has plenty to smile about (next picture) after abseiling down the high wall at a confidence course in Kaiapoi, Christchurch, one of the confidence building activities the kids got to do at Camp Twitch. Pictures supplied
Zarneo Baker after his successful abseil.

TE KARAKA boy Zarneo Baker has just returned from a life-changing experience at Camp Twitch, a special camp for children with Tourette’s Syndrome.

Tourette’s is a neurological disorder characterised by repetitive, stereotyped, involuntary movements and vocalisations called “tics”.

Zarneo, 10, said he loved the camp, especially the abseiling and rock climbing.

On the last night special effects make-up artists gave them zombie makeovers for the “Disco to Dismember”.

Awapuni School student Zarneo said he was sometimes bullied as a result of his tics, which he had no control over, despite the teacher explaining what Tourette’s Syndrome was to his classmates.

Camp Twitch was a bully-free zone where he could meet kids also living with Tourette’s.

This year the camp was held in Kaiapoi, near Christchurch, at the Blue Skies Conference Centre.

Zarneo’s mother Dominique said she started to notice the physical tics about three years ago but the verbal tics started more recently, which led to the Tourette’s Syndrome diagnosis.

“You need to have both verbal and physical tics to be diagnosed with the syndrome and we see a psychologist here fortnightly who helps him to manage the tics.

“Stress and boredom can make it worse.”

Zarneo said the tic, where his head tilts sharply to the side, could be painful and he had been given movements to do to help when he felt a tic coming on.

Mrs Baker also got advice from the head of the Tourette’s Association and said she was lucky that Zarneo’s psychologist in Gisborne got some training in Tourette’s while overseas.

“I’d like Zarneo to meet others with Tourette’s locally but so far we haven’t met anyone here.”

Sponsorship

A generous company paid the airfares for Zarneo and his father to fly to the camp, which was partly funded by Hell Pizza.

“We set up a givealittle page and I spread the word on Facebook, and one person offered to pay the airfares to Christchurch. He said he would help out again next year.”

About 80 children attended the camp this year and lectures and education from psychologists were held for parents at the camp.

Zarneo’s father Bruce said going to Camp Twitch was a valuable experience.

“Camp Twitch really opened my eyes and has helped me to get a much fuller understanding of Tourette’s. I would do it again in a heartbeat.

“I thought it would be all for the kids and was pleasantly surprised to have parents-only lectures about it.

“The psychologist had Tourette’s herself, which was really helpful.”

One of the camp activities included a visit from a police officer who had had Tourette’s since he was seven.

“It was very heartwarming for him to talk to the kids and tell them they can be anything they want to be.”

Mr Baker said he got a better understanding about tics in kids and how to manage them.

“Just because you have tics doesn’t mean that you can’t excel in life. Don’t let anyone tell you that you can’t do it just because you have a disability.”

It was their first time attending Camp Twitch and Mr Baker hoped they would be able to go again next year.

“It was an amazing experience for Zarneo. He stepped outside his comfort zone a few times and tried new things.

“Despite being wary of heights he was one of the few his age to attempt and succeed at abseiling down the high wall.”

TE KARAKA boy Zarneo Baker has just returned from a life-changing experience at Camp Twitch, a special camp for children with Tourette’s Syndrome.

Tourette’s is a neurological disorder characterised by repetitive, stereotyped, involuntary movements and vocalisations called “tics”.

Zarneo, 10, said he loved the camp, especially the abseiling and rock climbing.

On the last night special effects make-up artists gave them zombie makeovers for the “Disco to Dismember”.

Awapuni School student Zarneo said he was sometimes bullied as a result of his tics, which he had no control over, despite the teacher explaining what Tourette’s Syndrome was to his classmates.

Camp Twitch was a bully-free zone where he could meet kids also living with Tourette’s.

This year the camp was held in Kaiapoi, near Christchurch, at the Blue Skies Conference Centre.

Zarneo’s mother Dominique said she started to notice the physical tics about three years ago but the verbal tics started more recently, which led to the Tourette’s Syndrome diagnosis.

“You need to have both verbal and physical tics to be diagnosed with the syndrome and we see a psychologist here fortnightly who helps him to manage the tics.

“Stress and boredom can make it worse.”

Zarneo said the tic, where his head tilts sharply to the side, could be painful and he had been given movements to do to help when he felt a tic coming on.

Mrs Baker also got advice from the head of the Tourette’s Association and said she was lucky that Zarneo’s psychologist in Gisborne got some training in Tourette’s while overseas.

“I’d like Zarneo to meet others with Tourette’s locally but so far we haven’t met anyone here.”

Sponsorship

A generous company paid the airfares for Zarneo and his father to fly to the camp, which was partly funded by Hell Pizza.

“We set up a givealittle page and I spread the word on Facebook, and one person offered to pay the airfares to Christchurch. He said he would help out again next year.”

About 80 children attended the camp this year and lectures and education from psychologists were held for parents at the camp.

Zarneo’s father Bruce said going to Camp Twitch was a valuable experience.

“Camp Twitch really opened my eyes and has helped me to get a much fuller understanding of Tourette’s. I would do it again in a heartbeat.

“I thought it would be all for the kids and was pleasantly surprised to have parents-only lectures about it.

“The psychologist had Tourette’s herself, which was really helpful.”

One of the camp activities included a visit from a police officer who had had Tourette’s since he was seven.

“It was very heartwarming for him to talk to the kids and tell them they can be anything they want to be.”

Mr Baker said he got a better understanding about tics in kids and how to manage them.

“Just because you have tics doesn’t mean that you can’t excel in life. Don’t let anyone tell you that you can’t do it just because you have a disability.”

It was their first time attending Camp Twitch and Mr Baker hoped they would be able to go again next year.

“It was an amazing experience for Zarneo. He stepped outside his comfort zone a few times and tried new things.

“Despite being wary of heights he was one of the few his age to attempt and succeed at abseiling down the high wall.”

  • Tourette Syndrome (TS) is characterised by vocal and motor tics that range from mild to extreme. Individuals can have singular tics, but vocal and motor tics have to have been present for at least a year for an individual to be diagnosed with TS.
  • The syndrome is named after Georges Gilles de la Tourette, a French physician and neurologist who defined the syndrome in 1885.
  • TS is a genetic, neurological disorder that occurs during childhood. Not all children that inherit the TS gene display the traits associated with the disorder. Boys more commonly inherit the gene.
  • The exact gene and neurons that cause TS are not known so there is no cure. Medication can, in some cases, help with suppressing the tics.
  • Australian Tourette Syndrome Association statistics show 1 in 1000 children have TS. But not all of those with TS will be diagnosed with it due to the mild nature of their symptoms.
  • Only a small percentage of those diagnosed with TS have coprolalia, an extreme vocal tic that causes the person to repeat inappropriate words.
  • Remission can occur in adulthood.
  • Those with TS can expect to have a normal life expectancy.

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