HAPPY CAMPERS
A Tourette’s teen is a guiding light for fellow sufferers
On first inspection, it looks like a typical school camp. To the left, you’ll see a group of children racing each other on an obstacle course and in the main hall you’ll find another group preparing pizzas.
But stick around longer, and you’ll discover this camp is for children and teens who have a particular uniqueness about them. Welcome to
Camp Twitch, a place where young people with Tourette syndrome are able to show their true personalities and be themselves, in an uplifting and supportive environment.
Tourette’s can be confronting. It’s a genetic neurological disorder characterised by repetitive and involuntary tics, both verbal and physical.
People with Tourette’s can suffer from physical convulsions or spasms and even loud swearing – and there’s absolutely nothing they can do to stop it.
Christchurch teen Analise Tremblow (13) has lived with Tourette’s since the age of seven. For many children like Analise, Camp Twitch is the making of them.
“I get to meet a lot of kids with Tourette’s, which is really amazing, actually,” says Analise.
“Many of them have never known anyone with Tourette’s so it’s like they look up to me and I get to tell them my experience. Children with this definitely feel alone,” she says matter-of-factly.
Analise’s mum Robyn (46) is the brainchild behind the camp. Frustrated by a lack of information and resources for those suffering from the disorder, she formed the Tourette’s Association of
New Zealand. “It was out of desperation, really,” Robyn admits. “Before Analise, I’d had no experience with it at all.”
Tourette syndrome is most commonly a disorder in children and adolescents from the ages of two to 21. Analise was three when signs began.
“She started blinking excessively when she was three and we took her to the doctor thinking there was something wrong with her eyes. They just said she’d grow out of it,” recalls Robyn.
Developmentally, Analise was advanced. “She talked from an early age, and was walking by nine months and had such a big personality. We kind of had it on our radar that she probably was ADHD and slightly OCD as well, something common with children with Tourette’s.
“But as she grew older, more things started to happen – she’d clench her jaw and have funny head movements. When she was seven, the same year as the Christchurch earthquakes, we went up to Auckland and she just started cartwheeling everywhere – and we’d tell her to stop and she couldn’t stop,” says Robyn.
“I apologise all the time for my tics,” Analise adds.
“It’s a sensation I can’t stop. It scares me sometimes and it makes me so tired.”
Alalise’s past tics have involved swearing, which she’s happy to have grown out of. Currently, she mimics what others say, plus she has involuntary movements.
The family reached out for help from child and family mental health services and Analise was diagnosed with ADHD at seven. The Tourette syndrome diagnosis followed when she was nine.
“We didn’t know what it was or what to expect and nobody could give us any information,” Robyn says, sighing.
She turned online for help, where she and another mum planned to reach out to others, creating an informal peer support network. But they were bombarded with questions from other families facing similar issues.
And so Camp Twitch was born. “When we had the first camp, people travelled from Kerikeri to Invercargill just to be there,” tells Robyn. “The kids see other kids like them and realise they aren’t the only ones.”
Many have faced bullying and judgment from people who don’t understand the disorder, something Analise also experienced.
“She came home one day and said, 'Mum, I don’t want to live any more. People tell me I’m a weirdo and dumb, and I can’t take it,’” Robyn heartbreakingly describes.
But she has risen above the bullying with the aim of educating those around her.
And that’s also thanks to her “incredibly supportive high school [Cashmere High
School],” she says.
“I stand up at assembly and talk about it, and everyone is so understanding,” tells Analise. “They come up and ask me questions. It makes me happy that people want to know about it instead of telling me I’m weird.”
Analise’s tics die down when she’s doing something she loves. And for her, that’s drama, singing and science classes.
But she has one message especially that she shares with children just like her.
“I tell them they shouldn't have to hold in tics for fear of being bullied and being told off when really, having Tourette’s is special and unique. Don’t be scared to show who you really are. Embrace who you are.”