Solo mum's Tourette's battle

NAOMI ARNOLD
Last updated 14:27 05/05/2014
MARION VAN DIJK/FAIRFAX NZ

DAILY STRUGGLE: Young mother Renee Harvey, 21, of Nelson wants to let people know what life is like with Tourette’s.

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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.

Curiously, 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-de-sac 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 news 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 bird-like 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. Hard to be in the news 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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Her 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 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.

Peeti revealed all in a front-page 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."

She wants to buy Renee a computer so she can communicate with others who have the condition, without the stress of leaving the house.

But nobody can afford it, or pay for the internet connection.

"The best thing to do is bring this out. I hope and pray we can connect with other people who've got it."

Up until recently, there was no easy way to do that. When Robyn Twemlow's daughter was diagnosed at 9 years old, Twemlow immediately searched for a support group, but found nothing. So she started the Tourette's Association of New Zealand in September last year. She found the first few people via social media, and now lists membership at about 100. Four of those are in Nelson.

She says there's no medical specialist in New Zealand who diagnoses Tourette's or offers follow-up care. Most are diagnosed through psychiatrists. "A lot of children have issues around rage, sensory issues," she says.

"In a classroom so many of them are labelled a problem child who doesn't pay attention and makes noises. A lot of them are labelled as being not particularly bright, though they're often off the scale in intelligence. But they spend so much time trying to suppress [the tics] that they're not concentrating on what's going on around them."

She says it is not the tics that are the main concern, but other people's reactions to them. People with Tourette's often end up in mental health care because of the psychological impact.

Public misconceptions are the worst, particularly those perpetrated by a potty-mouthed character in the movie that has done the least to advance understanding of the condition, 1999's Deuce Bigalow: Male Gigolo.

"The media misrepresent Tourette's as: ‘adults swear'. That's the least of the worries of people with Tourette's," Twemlow says. "I've heard from 100 families in New Zealand and of that number, two swear."

These days, Renee Harvey and Leanne Peeti are a tight pair, more like sisters. They joke one minute, snap the next, growl and praise within a single breath.

"We're just like friends but she's my mum when she needs to be," Harvey says. "Sometimes she gets so tired out being around me, because I'm so fast and stuff."

"Sometimes it's so frustrating and tiring that I sit down and think ‘How the hell can I go on?"' Peeti says. "But then, how bad is it for her?"

Her daughter is "very cool for a solo mother with Tourette's".

"She's very grounded and Neko knows his boundaries."

But the twitches have worsened as Harvey has got older, and Peeti thinks she needs to learn different techniques to cope with it, to make out like something else is happening when she scratches her ear or jerks her elbow out.

"Renee is just out there with it, and if you don't like it, get over it. Not that she can help a lot of it anyway."

But Harvey disagrees. She'll never be normal, so why try?

"I ain't gonna suppress. I don't want to be doing that to satisfy other people's f. . . problems, you know? I'm not going to change for anyone."

She's looking forward to October, when the first Camp Twitch happens at Hanmer Springs.

"It'll be blimmin' noisy," she jokes. But it'll feel good to be around people with the same condition, and to meet others who may actually be worse off.

"I want to see how they cope with it, how they feel and what their lives have been like, and be able to give advice to people who need it, especially the young children."

Maybe, she says, there'll be some others who aren't trying to hide the twitches and noises that come as naturally to her as breathing, and instead agree with her that although they'll never be normal, that might just be OK. Besides, after a difficult life, things are going pretty well now for Harvey.

She studies three times a week at Auckland Point School's teen parent unit, gaining credits towards her NCEA Level 1. She has also just started singing lessons, and her teacher tells her she has perfect pitch.

WHAT IS TOURETTE SYNDROME?

Tourette Syndrome (or Tourette's) is a genetic childhood neurological disorder that causes an individual to have involuntary vocal and physical tics.

Stressful situations can also trigger a wave of tics, as can tiredness, and relaxation.

About one in every 1000 children in New Zealand will have the gene mutation that causes Tourette's, but out of that, only one in 100 will be diagnosed because of symptoms that interfere with their lives - and the mutation of the gene/genes that causes it is not yet fully understood. 

The male to female ratio of those diagnosed with TS is four to one. There is no cure, although medication can help to suppress some of the tics, and remission can occur in adulthood.

Contrary to popular belief, only a small percentage of those diagnosed with TS have coprolalia - an extreme vocal tic that causes them to repeat offensive words.

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.

- Nelson

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