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Tourette Misunderstood

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  • Tourette Misunderstood

    Tourette's syndrome misunderstood
    ThePress, Christchurch, New Zealand
    July 13, 2013

    BIG TIC WANTED: Amber Murdoch with her children, Rhys and Gwynedd, and Robyn Twemlow with daughter Analise want to set up a charitable trust to help people with Tourette's syndrome.

    Robyn Twemlow's daughter was 3 years old when she started developing "tics" - blinking constantly, clicking her mouth, and moving things around so that they were "just right".

    Twemlow didn't know what, if anything, was wrong with Analise.

    "People thought I was a bad parent because I couldn't control what she did," she said.

    "We thought that was just what Analise did and we became used to it."

    After six more years of doctor's visits, including one after Analise blinked for five days straight, she was diagnosed with Tourette's syndrome.

    Twemlow was "stunned" by the diagnosis of a syndrome she had no knowledge of.

    "I remember just nodding my head, taking the literature, putting on a brave face for the kids and driving home.

    "Later that night the shock set in. Then anger. Then guilt."

    Analise's tics - involuntary movements or vocalisations - grew more severe, to the point where she is isolated by the syndrome.

    She will often be sitting in class when she feels the compulsion to make a sudden movement or noise.

    "My daughter has been bullied for years and called ‘spaz', ‘retard' and ‘weirdo' over the past year since the tics have gotten worse," Twemlow said.

    "She didn't get invited to birthday parties or for play dates. Or if she did, there was never another invite."

    Twemlow did her best to research Tourette's, spending days scouring the internet for information.

    "There was no information about Tourette's in New Zealand," she said.

    "I had to order some books online but they were all to do with Australia, the UK or the US. I was so confused and frustrated.

    "There are no peer support groups for the kids [and] no support or educational groups for parents and caregivers or teachers.

    "There is not even a neurologist in New Zealand who specialises in Tourette's, therefore there is no data or research."

    In an effort to connect to others, Twemlow went on the internet "desperately seeking people with Tourette's."

    Via Facebook, Twemlow met another Christchurch mother, Amber Murdoch, whose 11-year-old son Rhys was diagnosed with Tourette's syndrome four years ago, while her daughter Gwynedd, 7, was diagnosed just this year.

    Murdoch, a nurse and solo mother, said it could be hard to manage two children with the syndrome.

    "We have a pretty noisy house. Sometimes one of the kids will set the other one off and they'll both start their tics."

    The family had developed ways to manage the tics, Murdoch said.

    When Gwynedd "honks" in the supermarket - one of her most common tics - her older brothers would join with her in a line and "pretend to be geese" with her.

    "They're pretty good at looking after their sister, and she's at a young age where kids don't mind so much."

    It was the public who had a lack of understanding about the syndrome, Murdoch said.

    "I tell people my children have Tourette's and they think they're swearing in public all the time.

    "That actually doesn't affect most people with Tourette's."

    "They go through different phases of which tics they're doing; Rhys had a sniffing phase, which was difficult to explain.

    "Often people stare at my children in public and I get this urge to go tell them about Tourette's."

    Together, the two determined mothers want to create a charitable trust and association called The Big Tic, to support Tourette's sufferers and their families.

    "We've got some big ideas. We want to educate people about Tourette's and provide an environment where parents can chat about things they are going through," Twemlow said.

    "We want to create an atmosphere where the kids can get together and just be themselves."

    The charity would also help families with the costs associated with Tourette's.

    "Often when children have physical tics they can strain their neck or hit their head," Twemlow said.

    "There's a lot of doctor and physio bills.

    "We could also help fund music and drama lessons, which are a huge outlet for children with Tourette's but can be expensive to families."

    The pair needed donations to get a website going, but Twemlow also needed to find other people with Tourette's.

    "If it's just us that are affected, then maybe we don't need a charity.

    "But if there are a whole heap of other people in the same boat, then we can do this together."
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