THE NELSON MAIL Saturday, May 3, 2014 —
Weekend
15
www.nelsonmail.co.nz
‘‘I got bullied and picked on and stuff. I was naughty back then, and being bullied didn’t help. I used to be a little b. . . I was really bad.’’ Renee Harvey
CAMP TWITCH The Tourette’s Association of New Zealand is fundraising for Camp Twitch, a gathering for children and adults with Tourette syndrome. See tourettes.org.nz for more information and to donate.
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uriously, Renee Harvey’s tics go away when she sings. When she raises her voice above the happy din of her 2-year-old son Neko and sings her favourite songs, it’s the only time her hands stay still. The rest of the day, they pluck at her clothing: pulling her jersey down, tugging the bottoms of her leggings over her heels, scratching her face, and sweeping through her hair, flipping it from one side to the other. She lives on a benefit with her son, in a small unit on a handkerchief of lawn at the end of a cul-desac in Tahunanui. ‘‘It’s a nice quiet street,’’ she says. ‘‘Though not when I’m here.’’ She is a bit nervous about being in the paper and keeps her eyes down at first. She was quiet as a child, but since developing Tourette’s at 9, she has been scolded, smacked, thrown out of libraries, sent out of classrooms, and laughed at, all for ‘‘naughty’’ behaviour she can’t stop. When she does look up, she fixes you with beautiful green eyes, a ring sticking out of the corner of her eyebrow. But the rest of her body is uncontrollable. She stands, takes a giant leap on to the rumpled double mattress in the corner of her lounge, jumps on it and turns in circles, steps off with a spring and over to the kitchen wall, which she hits with both hands. She sits back down again, but her elbows jump out and she tucks and untucks her legs. She hums and makes birdlike whistles; and lately, in the last year and a half, has started making small spitting sounds. She does swear a lot, though tries to cover it up with ‘‘flip’’ and ‘‘shoot’’ and ‘‘frigging’’. Still, her voice has a tendency to rip through the air in a startling shout. ‘‘What are you doing, mate? Stop it, mate, STOP!’’ she tells Neko, who is pulling off his clothes. ‘‘Come on, don’t jump all over me, don’t, don’t, DON’T!’’ As well as the startling outbursts, she frequently drops ‘‘I love you’’ into conversation, sandwiched between her sentences. ‘‘It’s not easy,’’ she says. She is childlike in her nervous energy, but although it’s possible to concentrate very hard and suppress her tics, she doesn’t see why she should – they just bust out again tenfold later on. Beneath her apparent flightiness is stern resolve. Stare at her, and she’ll flat-out ask what the f. . . you’re looking at. She’ll tell you to turn around if you don’t like what you’re seeing. She is the way she is, and if you don’t like it, well – you can friggin’ well get used to it. She had to. It’s hard to talk about it, though.
come to pick her up for school, she’d threaten to spray him in the eyes with her Impulse deodorant. He’d threaten to take her to school in her pyjamas. She’d scream and fight. The police would come around; and Harvey would put on her uniform and acquiesce. But she didn’t for long, leaving school before she got NCEA. Info from Medsafe says Ritalin is associated with the onset or exacerbation of motor and verbal tics and worsening of Tourette’s syndrome, though notes such adverse reactions are very rare. However, common side effects of the medication include tremors and dyskinesia (involuntary muscle movement). Peeti took her off Ritalin when she realised that the ADHD was all to do with the world her children lived in. But in 2008, it was resumed, as Peeti thought it would help with the Tourette’s. She only found out later that Ritalin can affect the tics of Tourette’s, and that 90 per cent of children with Tourette’s have co-morbidities – obsessive compulsive disorder, anxiety, and ADHD.
Daily struggle: Young mother Renee Harvey, 21, of Nelson wants to let people know what life is like with Tourette’s.
Photo: MARION VAN DIJK/FAIRFAX NZ
What makes Renee tic? Ahead of the first-ever Camp Twitch for people with Tourette syndrome, Naomi Arnold meets a solo mum who refuses to fake who she is. Hard to be in the newspaper and have her photo taken, and to suppress the twitches long enough to speak to the camera about her condition. But she says she’s just going to friggin’ do it; she wants to let people know what her life is like. She has only met one other person with Tourette’s, who is also living with the stares and sniggers and accusations. Renee Harvey is just 21, and her condition is incurable. In all of this, she is alone.
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er mother, Leanne Peeti, blames herself for everything. Peeti lives in Richmond now, but took her three teenagers and escaped from the West Coast two years ago. She is a slender, tattooed woman with bracelets stacked up
her arm and thick hair, dyed dark. She works as a caregiver, but had to stop that recently after one of her clients started threatening her. She has the face of a woman who’s been threatened often, but survived. The tics began when Harvey was in primary school, after a doctor prescribed Ritalin for attention deficit hyperactivity disorder. Her brothers Jai and Tane were also medicated throughout their early lives; 4-year-old Jai was swallowing regular doses of dexamphetamine, which changed to Ritalin when he was seven. But Peeti says her children took the pills in place of a quality home life – one with secure parents and a safe upbringing. An alcoholic, she says her world was an ugly mess of not owning her problems and instead blaming her children
for them. The medication kept the children quieter, helped her stay in denial about her own problems, and let her keep drinking. Her kids were in and out of family homes and were well-known to West Coast support service Homebuilders and Child Youth and Family. ‘‘I’m not about to say it was a good upbringing at all.’’ Her daughter was ‘‘a normal little girl’’ until the medication. After the second pill she took, she began involuntarily kicking her brothers, and kicking out a leg when she was sitting watching TV. Then she started jumping from the floor to the furniture, screaming ‘‘I love you!’’ and ‘‘One, two, three, shut the f. . . up Renee!’’ She would have to stand up and sit down three times before she could
move away from the chair she was on. She was 9 years old. Harvey’s grandmother, Sandra Rickard, still lives in Westport. She has fostered children for years and worked with CYFS and family support groups, and says her granddaughter’s condition is ‘‘a heartache’’. ‘‘She was a dear little girl. My granddaughter played netball, swam, cleaned my house, and never had a tic.’’ Then came the drugs. ‘‘For a whole year we growled at her and smacked her because she was doing out of the ordinary things. Hurting things, hurting herself. But we didn’t realise she didn’t know – it was her Tourette’s.’’ ‘‘It went from one extreme to the next, to the next, to the next,’’ Peeti says. If there was a cup of
coffee sitting on the table next to her, something in the small girl’s head told her to push it, and keep pushing it until it fell off the table and smashed. ‘‘I used to say to her: ‘What are you doing?’ She’d say ‘What? I’m not doing anything’.’’ Harvey says life was ‘‘depressing’’. School was a little bit hard, she admits. ‘‘Really hard, actually.’’ ‘‘Everyone thought she was funny,’’ Peeti says. In the head, that is. ‘‘I got bullied and picked on and stuff,’’ Harvey says. She’d sit in class jerking her limbs spasmodically, and making deep sounds in her throat to try and cover it up. ‘‘I was naughty back then, and being bullied didn’t help. I used to be a little b. . . I was really bad.’’ When the truancy officer would
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eeti revealed all in a frontpage Westport News story in the winter of 2009, warning parents to find out more about giving their children medication. Westport South School, she says, had suggested her two sons could be suspended if they weren’t medicated. Principal Jo Duston did not want to talk about Peeti and Harvey for this story, but told the Westport News at the time that schools did not make assessments or diagnoses and medication had helped the Peeti children stop and think about their behaviour. ‘‘[The children’s] behaviour when they weren’t receiving the medical treatment that they were entitled to was at times not appropriate for their learning and disadvantaged others,’’ Duston said. She also said the school had often completed forms necessary for the children’s ongoing treatment, but always at Peeti’s request. Rickard says there was scope for lawsuits and a big fight about it all, but life was too hard to go through with it. ‘‘You just learn to live with it,’’ she says. ‘‘The worst thing is that it’s all hush-hush. We need to see these other people with Tourette’s because we don’t know how to help our granddaughter.’’
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