Camp mother
A holiday camp for young people with Tourette’s syndrome is the focus of a local documentary on TVNZ 2. Organiser Robyn Twemlow (right) tells Sarah Nealon about her personal reasons for the camp.
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other thought “Essentiallypeople ‘Man, (withit I found would Tourette’s)all be these great and to get they all were those all peoplein different together’ parts but of the country. We had someone from Invercargill and the furthest away was from Kerikeri,” says Robyn.
“There were no groupings of people in one particular place so I came up with the idea of having a camp and put the wheels in motion.
“I was expecting maybe 30 people to come together for that first camp and we ended up with 97.”
That first camp was in 2014 at Hanmer Springs. The second took place last year in Rotorua and is the subject of a documentary called Camp Twitch.
Over the course of four days a group of young people with Tourette’s, who range from children to those in their 20s, attended the camp with their caregivers. They tried zip-lining, made pizzas and visited a local swimming pool.
Tourette’s is a neurological condition which causes involuntarily verbal outbursts and physical movements known as tics. Occasionally these verbal outbursts can be in the form of expletives.
For Robyn it can be tough seeing the effects of Tourette’s on Analise.
“She’s had the swearing tic. It came on quite badly when she was about 11 and she gets it intermittently,” Robyn says.
“The thing with tics is they come and go. A particular tic might be really severe for a couple of months or a couple of weeks and then it might lessen and then it might come back again. I say to a lot of the parents the only thing that’s
predictable about Tourette’s is that it’s unpredictable. You never know what you’re going to get ...
“Analise went through a phase, probably for months on end, where her legs would just collapse underneath her and the next minute she would be on the ground.
“She would have grazes up her face and obviously her legs and her hands, quite regularly. There was absolutely nothing we could do about it.
“Quite a common one is a self harm one, so again it’s another one that comes and goes.”
Robyn says Analise was bullied at school but things improved once her daughter bravely decided to tell her class and then the whole school (at an assembly) about her Tourette’s.
However, forging friendships is a challenge for the teenager.
“To this day she doesn’t really have what I would call a friend,” says Robyn, who founded the Tourette’s Association of New Zealand almost four years ago.
“There are groups of people that are accepting but she went to camp and she made two good friends that she writes to or they Skype. When they get to camp they bunk down together. You know they will have a long-term friendship.”
Other attendees at the camp include Nelson’s Renee Harvey, 23, who has a tough life managing her Tourette’s and looking after her five-year-old son.
Then there is Tauranga man Adam Belcher, 29, whose quality of life has improved thanks to, he believes, a medical cannabis spray approved by the Ministry Of Health.
Robyn hopes viewers of Camp
Twitch will gain an understanding about what life is like for those with Tourette’s.
“A lot of them have had social stigma and have withdrawn from the school system,” she says. “A couple of them are homeschooled or are pretty much housebound so you sort of see the reality of Tourette’s that it’s not just swearing and that it can be quite debilitating. But at the same time they are just normal people.”
Robyn and Analise did a talk about Tourette’s in Christchurch almost two years ago.
“Analise got a standing ovation at the end and that really boosted her confidence,” says Robyn. “She’s taken it on to be the ambassador for The Tourette’s Association.”
Robyn says Analise is a caring girl who is upfront about her Tourette’s.
“If you spoke to her she’d say ‘Get used to it’ or ‘Suck it up. This is me’.”
“If you spoke to her she’d say ‘Get used to it’ or ‘Suck it up. This is me’.” – Robyn Twemlow about her daughter Analise