What makes Renee tic? by Naomi Arnold

THE NELSON MAIL Saturday, May 3, 2014 —

Weekend

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.

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.

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

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.’’

❚ Continued page 16

FOR YOUR SUBSCRIPTION MySubscription is the easy way to manage your newspaper subscription online! You can update your email address, put your newspaper on hold, or report a missing or wet newspaper online at anytime and from anywhere.

Every month we’re giving away five prizes of $100 subscription account credits Simply register for MySubscription or log in to your existing account and you’re automatically in the draw!

TO REGISTER: Visit mysubscription.co.nz and follow the simple registration process. You will only need your subscriber ID* and email address and once you’re registered you will be able to manage your subscription at any time and from anywhere, including from your mobile phone.

Your Subscriber ID is the set of digits following the “/” in the account number on your statement. For any queries please email mysubscriptionsupport@fairfaxmedia.co.nz

Terms and conditions: All current Fairfax subscribers who register or use MySubscription each month will automatically be entered in the draw. Winners will be contacted. Prizes are not transferable or exchangeable for cash. Staff, families and contractors of Fairfax Media are not eligible to enter. Promotion ends 31 Dec 2014.

— THE NELSON MAIL Saturday, May 3, 2014

WEEKEND

Lonely battle with Tourette’s ❚ Continued from page 15 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 pottymouthed 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.’’

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. ‘‘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?

hese 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.’’

‘‘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.

BOOK REVIEW

The rebirth of a Nelson treasure A rugged and rewarding place to be Anything Is Possible; The Resurrection of Fairfield House, by Alan Stanton. Published by Friends of Old Fairfield, 196 pages, $39.99. Reviewed by Marion Gilbertson

f I was a contract painter, I would consider it an honour to paint Fairfield House. It is clearly a house of good taste, with its stately verandahs, ornamental fretwork and category A rating by the Historic Places Trust. Painting such a prestigious home would give me pleasure and pride. Not so in 1979, when Alan Stanton, author of Anything Is Possible, moved in. Back then, Fairfield House was in a state of serious decay. It had been empty for 13 years, and the Historic Places Trust had rated it D. The Nelson City Council was about to order its demolition. Being a man of dreams, Stanton decided to do the impossible; restore Fairfield to its former magnificence. Any-

thing Is Possible is his story. It is a first-hand account of his crusade to convince the rest of Nelson of the importance of this wonderful building. Recounting his early years as honorary caretaker of the property, and his endeavours to deter bees, rats and vandals, he reminisces over the birth of FOOF (Friends of Old Fairfield), and pays tribute to the countless volunteers who gave their expertise and time to the restoration project. He describes the colourful days of the ‘‘hippies on the hill’’ and their innovative fundraising efforts to bring in money for materials and labour. Just as the restoration of Fairfield was a haphazard process, Stanton’s story is a

sometimes random collection of memories as it flits between the years. At times it left me a little disoriented; however, after finding the comprehensive timeline at the end of the book, all is made clear. Sadly, Stanton died last month, but he has left a memorable legacy. Without Fairfield House, the Nelson community would be much poorer – and just as it has earned its place in Nelson’s heritage landscape, Stanton’s story has earned its place in Nelson’s social history. Reading Anything Is Possible will enrich your appreciation of the house we see today. However, it should come with a warning: ‘‘Content may inspire.’’

JUMBO CROSSWORD 1025 ACROSS 1 4 9 14 15 17 18 19 20 21 24 25 26 29 31 32 33 35 37 39 40 41 42 1

DOWN

47 Infirmary (8) 51 Coral banks (5) 55 Specify as part of an agreement (9) 56 Lowest female voice (9) 58 Father (4) 59 In favour of (3) 60 Goes hard (4) 61 Loveliness (6) 62 Anger (3) 63 Ball-stopping player (10) 66 New York river (6) 67 Floor covering (6) 69 Liked better (9) 72 Underneath side (6) 73 Startled (9) 75 Horizon (7) 77 Go astray (3) 80 Intone (5) 81 Satire by Jonathan Swift (9,7) 82 Distressed (5) 83 Airfield shed (6) 84 Side by side (8) 85 Wears at the edge (5)

Ore test (5) Hunting illegally (8) Dexterous (6) Requirements (5) A situation or course of action having both good and bad effects (6-5,5) Adhesive (5) Day before (3) Veered sharply (7) Baffling (9) Loan shark (6) Wormlike pasta (9) Settle in advance (6) Property (6) One-person transport (10) Scamp (3) Moves (6) Petty quarrel (4) Light blow (3) Bludgeon (4) Indemnity (9) Early scientist (9) Old gold coin (5) Small houses (8) 2

❚ Solutions, page 12

2 3 5 6 7 8 9 10 11 12 13 14 16 22 23 24 25 27 28 30 32 34 36 38

42 43 44 45 46 48 49 50 51 52 53 54 57 64 65 66 68 70

Timing device (9) Cautionary colour (5) Probability (4) Type of cigar (7) Not enough (12) Lustre (5) Moderately slow (mus) (7) Thick cord (4) Be emphatic (6) Waste drain (5) Crux (7) Eastern (anag) (7) Striking (3-8) Clippers (6) Natural environment (7) Fizzy confectionery (7) Burst (6) Assign to a post (7) Plaster wall coating (6) Seldom seen (4) Jammed (5) Full amount (5) Aid (4) Lavatory (3)

71 72 74 76 78 79

Innocence by Dean Koontz, HarperCollins. 338 pages $34.99. Reviewed by John Ewan. Author Dean Koontz is not one to give much away. In one of his books reviewed here eight years ago, his biographical notes said he is from Pennsylvania, married to Gerda and lives in southern California. This time around the only thing different in the notes is that their dog Trixie is now their dog Anna. Koontz doesn’t give away much in his books, either. In his latest, he manages to keep the reader wondering is this an allegory or a simple story of suspense? Such is his power to keep the reader guessing, it would ruin the book to answer that question or even to outline the plot. So here is the next best thing: the setting. Addison Goodheart (is the name a clue?) comes to live in the city. He becomes one of the hidden because he

18 20 22

The Accident by Chris Pavone. Allen & Unwin. Softcover, $36.99. Reviewed by Mary-Anne Baker.

The Accident is set in the world of book publishers – a seemingly cutthroat, competitive place at the best of times, but even more so when a manuscript of great interest surfaces. Literary agent Isabel Reed is given sole access to a potentially explosive expose about a media mogul with worldwide contacts and influence. Or is it really? Isabel wants to know what the truth really is. However, when the bodies start mounting up, it is clear that getting a book like this published is going to be

28 29

35 37

40 41

46 51

65 66

71 72

78 80

more of a challenge than the usual paperback. One of the key players is a CIA operative who will stop at nothing to prevent the book being published. The fact that there is only one hard copy would appear to make this relatively easy. (Why no-one scanned the manuscript into a more portable digital copy is just one of the unanswered questions.) The nameless author is always in the background, watching progress, and his reminiscing proves the substance of the manuscript and its significance.

There are quite a few characters, some of whom are obviously cannon fodder as the manuscript progresses along its route to becoming a book, and some providing rather more detail than is strictly necessary. It takes some effort to keep the time lines sorted as the story follows the different characters throughout the book and also jumps back and forth in time in relation to the details of the manuscript. Things coalesce satisfying well in the last part as the twisted plot is finally unravelled. It isn’t too bad a read, really – lots of action, and more bodies than you can shake a stick at. But at best, it’s more of a time-filler than a seriously good book.

59 61

parents. Goodheart for example has a foster father he calls ‘‘It’’. The father calls him ‘‘Son of It’’. Besides them, there are some ethereal beings who Goodheart calls Clears and Fogs. Fogs are evil but we never really know whether Clears are good – or simply just a little less evil than Fogs. And one mustn’t forget the marionettes whose eyes seem able to follow one around a room. It does all come together and if you are prepared to suspend credibility for the duration, you’ll be in for an entertaining read. Seemingly Koontz knows what to give his readers. The blurb accompanying my review copy states he has now sold over 450 million copies of his work. That number is going up by 17 million a year. And who are we to question the truth of this claim even if some of his own words may take a bit of swallowing.

fears that if people see his face – and especially his eyes – they will be so outraged they will kill him. This we are told repeatedly but Koontz doesn’t explain until the end. Goodheart lives under a hoody and sometimes behind a ski mask as well. In this mysterious struggle to remain out of sight, Goodheart eventually meets someone who also has a phobia. Gwyneth cannot bear people touching her. Obviously this novel is not going to be hot and steamy. For good measure, Koontz brings in a host of bizarre characters. For starters, there’s a rapist/ paedophile, a crooked art dealer, a kindly guardian, corrupt police and a strange collection of

Body count mounts up in literary battle

til relatively recently. This labour of love is a geological, geographic and social history that stretches from back beyond Maori mythology and the first Europeans, who hunted whales, and pastoralists who drove the first sheep around the coast, up to the present day. Individual chapters describe the beginnings and evolution of settlements such as Ocean Beach, Castlepoint, Lake Ferry, Ngawi and Riversdale, with others devoted to smaller communities. The glossy pages include a feast of photographic images that superbly complement the text. They span more than a century, complete with the latest Google Earth maps.

Some of New Zealand’s worst shipwrecks happened here, and it’s still a dangerous place to go to sea, but the lure of its prolific fishery endures. The section on remote Ngawi, on Palliser’s southeast coast, epitomises the challenges faced by generations of fishermen and adventurers. The photos show huge groper and crayfish caught circa 1950s, with great shots as well of the cars that made it through. Graydon combines multiple historical names, dates and details into an easy-to-read, accessible narrative peppered with archival anecdotes and tall tales of various eccentric characters. While no doubt of interest to locals, some of the ample detail gets tedious. For instance, fascinating as the establishment of Riversdale may be (it didn’t exist in 1950), are all the particulars of the golf, surf lifesaving and racing clubs really necessary? Make allowances: this intriguing and informative resource is a great read about a rugged, rewarding part of our country.

14 15

My experience of the Wairarapa began as a child, when the family drove over the Rimutakas to camp at Carter’s Bush or Pirinoa or near Lake Ferry/Onoke – no camping mod cons then! I’ve since learned that my greatgrandparents farmed at Tinui near that coast, and I recently spent time in the area with family who’ve moved there from the city. Much of the bush is in orderly paddocks now, and many places have become trendy and expensive. Still, some wildness is never far away, especially the wide open coast that refuses to be tamed. Jim Graydon’s passion and concern for the 220-kilometre coast’s rugged landscape and its future beam from every page of On the Edge. His history, photography and outdoor pursuits background create a thoroughly

researched and minutely detailed account of the area, parts of which remained isolated un-

Shrouded in mystery and lost in the fog

Luggage (5) Screwed (7) Malarial fever (4) Thrilled (6) Muscular (5) Dealer in shares (11) Alternatively (7) Tune (3) Uniform (7) Text of play, film (6) Resourceful (12) Boast (4) Chief (6) Forever (9) Touch (7) Optimistic (7) Drain unblocker (7) Heating part in a kettle (7) Musical composition (6) Copper-zinc alloy (5) Flier (5) Paramour (5) Male deer (4) Small island (4)

On the Edge: Wairarapa’s Coastal Communities, by Jim Graydon. Fraser Books, 296 pages, rrp 49.50. Reviewed by Judith Paviell.

SMYTHES LAWYERS

Th e

REAL

b o o ksh o p

For all your legal needs.

NOW OPEN SUNDAYS

Rachel Rumball, Solicitor Emma Marshall, Solicitor Ron Thomson, Solicitor

254 Trafalgar Street, Nelson Ph (03)548 Fax (03)546

82 83

85 6000364AB

300 Trafalgar St, Nelson Tel 03 546 8750 enquiries@smytheslaw.co.nz www.smytheslaw.co.nz

9992 6799

email: info@pageandblackmore.co.nz