Parent to Parent NZ September magazine 2017

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NEW ZEALAND’S FAMILY DISABILITY MAGAZINE

SEPTEMBER 2017

Being ‘just Bailey’ P10

Model on wheels P14

Living with ‘Lucy’ P18

WIN

fted d-cra sket n a h A ft ba an gi R DETAILS artis O F P35 SEE

Siblings speak out P24


Kia ora readers...

The 2017 General Election is almost upon us, so we wrap up our ‘Your Voice Your Vote’ with a Politician Point Q&A from the final three parties. It’s important the voices of people with disabilities and their families/whānau are heard, so we hope it encourages you to make your voices count with a vote! Have you ever pondered what life might be like for the brothers and sisters of children with disabilities? The relationship between siblings is complex, profound, and vital for everyone to flourish in a family. Brothers and sisters will also have the longest life relationship with their disabled sibling because parents age. That’s why we run SibSupport programmes for brothers and sisters aged 8-18. Check out the stories of three super sisters who are SibSupport leaders on pages 22-25, and two short videos about more incredible young people on our website.

Thank How to donate to Parent to Parent

you

Givealittle givealittle.co.nz/org/parent2parentnz

Their stories also feature during our national public awareness and annual fundraising appeal in October for three weeks on Rhema Media’s radio stations and Shine TV. As public awareness of Parent to Parent increases, so does demand from family/whānau members needing our support and services. The challenges of funding all this to an ever-widening population nationwide are significant, so please encourage your family, friends, work colleagues and networks to take a moment to listen to the voices of the brothers and sisters of children with disabilities. They may be just a little blown away – and hopefully donate or become members of Parent to Parent. Until the December magazine … Tū pakari tonu mai e te Whare Tapawhā! Let the house of health and wellbeing stand strong! - Sue Pairaudeau, Editor

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Hono, kōrerotia, tautoko

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Connect, inform, support family and whānau of Kiwis living with disabilities. Editor: Sue Pairaudeau Editorial: Freelance writers Monica Holt, Geoff Lewis, Clare Chapman and guest contributors Advertising: Carey McLaughlin Graphic design: Te Reo Hughes Cover: Bailey Matchitt, by Steven Mahoney ISSN 2463-3631 (Print) ISSN 2463-3585 (Online) Copyright: Seek permission from the editor for the whole or part reproduction of any contents in this publication. Disclaimer: The views and opinions expressed in this publication are those of contributing writers and not necessarily those of Parent to Parent NZ.

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CONTENTS

15

22

3

Nine-year-old’s fundraising goal

4

First Disability Rights Commissioner

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Your Voice Your Vote

8

Immersed in sport: Maioro Barton

10

Being ‘just Bailey’

14

Model on wheels: Claire Freeman

18

Living with ‘Lucy’: Robbie Francis

20

Taekwon-do squad trains for champs

22

Special brother-sister bond

24

Siblings speak out

26

Opinion: Ally Attwell

29

Life in transformation

30

US$51m disabled theme park

32

Steps for sound sleep

34

New faces

35

A little bit yummy: Win a gift basket

36

Playgrounds for all abilities

37

Out and about


People

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Parent to Parent September 2017


People

Nine-year-old fundraises for children with prosthetic limbs Lucy Holdaway.

Photos: Supplied

By CLARE CHAPMAN

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ast year Lucy Holdaway, nine, was watching YouTube and came across a video of a gymnast with a prosthetic limb competing. The athlete struck a chord with Lucy, who made it her business from that day to raise money for children who need a prosthetic limb. For Lucy, who attends St Margaret’s College in Christchurch, that has meant a lofty fundraising goal to help local children. So far, she’s reached just over a quarter of her goal through gutsy determination and social media. “On the first day of school this year, Lucy took it upon herself to go and talk to the principal about her fundraising,” mum Rebekah says. “During that conversation, they talked about how to raise awareness about prosthetic limbs.” That was important to Lucy, who says many friends didn’t know what a prosthetic limb was when she told them what she wanted to do. “Then we went along to a parent-teacher interview and thought the goal might be to raise about $500, but Lucy told us she’d be aiming to reach $10,000. We all thought that was a lot and asked her if she knew how much money that was. Her response was: ‘Go big or go home. You can’t do much with only a couple of hundred dollars’.”

Opposite page: Top left, Lucy with Mt Ruapehu 2007 eruption survivor William Pike. William is an active amputee, adventurer, respected speaker, author of his biography Every Day’s a Good Day, and founder of the William Pike Challenge Award. Bottom right, Lucy spends time meeting and swimming with other children who have lost a limb.

Lucy has since set up the Facebook page Prosthetic Help where she posted a video talking about why she wants to help children with prosthetic limbs, and how she’s going to raise the money. She’s also set up a Givealittle page with help from her parents, held two mufti days in conjunction with St Margaret’s, picked walnuts and sold them with her friends, and asked for pledges from friends and family. “She’s also done a cheese roll fundraiser through Facebook that went really well,” Rebekah says. Lucy isn’t yet quite sure how the money will be distributed when she reaches $10,000; for now, it’s about doing everything she can to get there, including spending time swimming with children who have lost a limb, and meeting Paralympians in the same situation. “What we’ve realised is that there’s a lot of difference between people who have an ACC injury and those who lose a limb due to medical issues simply because of the way the funding works, so we’d like to look at helping those particularly who have been affected by cancer or other medical issues.” Sending children to specialised rehabilitation camps overseas or helping children to participate in sports they enjoy or wish to compete in, are other ideas for the disbursement of funds, which Rebekah says will be by way of a grant system. To follow Lucy’s journey visit her Facebook page, facebook.com/prosthetichelp

Parent to Parent September 2017

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News

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Disability sector welcomes new commissioner

isability advocate and former Paralympian Paula Tesoriero took up her three-year appointment as the Human Rights Commission’s Disability Rights Commissioner on July 31, 2017. “Ms Tesoriero has a significant record of working to increase awareness of disability issues,” Associate Justice Minister Mark Mitchell said at her appointment in June.

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s the first Disability Rights Commissioner, Paula Tesoriero’s appointment is a welcome milestone for New Zealand, and timely with the New Zealand Disability Strategy 2016-2026 transforming the existing disability support system nationwide. We are confident that with her background she will take every opportunity to make a real difference to the quality of life for people with disabilities and their families/whanau, which will ultimately benefit our communities. We strive to ensure that people with disabilities in this country will be part of shaping a future that is inclusive and accessible, and that Government practices a visionary social investment approach. This type of society benefits the wider population on many levels when people with disabilities can participate fully in their communities. We look forward to supporting Ms Tesoriero in recognising the rights of people with disabilities and removing barriers to their living full lives. Noel Cunneen CE Parent to Parent NZ

Paula Tesoriero.

“She is well informed on New Zealand’s international human rights standing and her legal background and understanding of the machinery of government will be advantageous in the context of the Commission’s work.” Since February 2016 Ms Tesoriero has been general manager, Systems and Partnerships with Statistics New Zealand. From 2010-2016 she was general manager Higher Courts with the Ministry of Justice. Ms Tesoriero created history with her world record-breaking time in the women’s 500m cycling time trial at the Beijing Summer Paralympics in 2008, securing New Zealand’s first gold medal at the Games. Her services to cycling were recognised with a Member of the New Zealand Order of Merit in the 2009 New Year’s Honours. Ms Tesoriero has a high profile in the disability sector, where she served as deputy chair of the NZ Artificial Limb Service and a board member of the Halberg Disability Sport Foundation. She holds an LLB, BA, and Postgraduate Diploma in Public Management.

Background The Human Rights Commission is an independent Crown entity that works with Government and civil society to promote respect for human rights, encourage harmonious race relations and equal employment opportunities, and to resolve complaints about discrimination and related issues. The position of Disabilities Rights Commissioner was created by an amendment to the Human Rights Act 1993 passed last year. Ms Tesoriero replaced Paul Gibson, who was the first Human Rights Commissioner with a formal responsibility for disability issues.

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Parent to Parent September 2017


News

Working for the rights of disabled NZers By PAULA TESORIERO (MNZM) Disability Rights Commissioner

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y parents bought me my first bike, a blue Healing 16, when I was very young and it changed my life. Being an amputee I couldn’t keep up with other kids running and walking, but on my bike I could keep up with them. It gave me a sense of freedom and of fitting in, but off the bike I didn’t have that same sense of belonging. I was in hospital a lot; ongoing surgeries were part of my life and I grew up with a profound sense of no control over my own body. I used to ride everywhere, daring to imagine that I might become one of the fastest people in the world on a bike. As a young adult I deliberately tried to shut disability out and suppress part of who I am; I tried to ignore it on the basis that this would be the only way to make it in life. But I was drawn back to my bike, and being a Paralympic athlete meant I had to confront my own disability. It has been a life-long journey to truly integrate disability into my world. When I stood in a Paralympic village for the first time I finally understood I am not who I am despite my disability – I am who I am because of my disability. My medals, world records and journey to the podium are not the things I am proud of the most. What I am truly proud of is the journey I've taken to integrate disability into my world. When I returned home I decided to advocate for other people like me and, many years later, I have found myself at the Human Rights Commission. It's an incredible honour to be here and I walk in the steps of some incredible New Zealanders. In the 2013 Disability Survey one in four New Zealanders identified as disabled. With our aging population we know this figure may rise. While we've come a long way, disabled New Zealanders still have a long way to go if we are to participate in our communities on an equal basis with other New Zealanders.

“I used to ride everywhere, daring to imagine that I might become one of the fastest people in the world on a bike.”

Paula Tesoriero Photo: Supplied

Disabled people still face barriers preventing us from reaching their full potential and those barriers cut a heavy swathe across their lives. The things most New Zealanders take for granted – going to school, getting a job, finding a house to live in – are everyday challenges for most people, but for disabled New Zealanders they're often insurmountable. It’s been a busy seven weeks and I’ve spent them listening to stakeholders in communities to make sure I understand the broad range of issues to increase my knowledge and advocate well. It’s also a time to refine priorities so I can help shift the dial meaningfully for disabled New Zealanders across a few important things, rather than doing lots of things not so well. Many years have passed since that five-year-old was zipping about the streets of Kapiti on her bike wanting to fit in. I'm now in a role where my entire focus is working for the rights of people like that little girl so that she doesn't' just try to fit in, but that her community and country makes sure she does.

Follow me on Facebook https://www.facebook.com/ PaulaTesorieroHRC/ and Twitter @paulatesoriero

Parent to Parent September 2017

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Election 2017

Politician Point

Minister and MPs answer disability-related questions

1

What is needed going forward to make New Zealand a more inclusive society?

Access Alliance has recently created 2 The the Access Matters campaign (of which Parent to Parent is a member). What are your thoughts about the Access Matters campaign and its aims?

Access Alliance is asking for the 3 The government to introduce legislation to ensure people with disabilities can participate fully in their communities. How do you think this could be achieved?

4 to develop New Zealand as an inclusive What has been done over the last term society?

July’s magazine featured National, Labour and Green responses to these set questions. For this edition New Zealand First, ACT, United Future, MÄ ori Party, TOP and Mana were invited to respond. When this edition went to print only New Zealand First, United Future and MÄ ori Party had responded.

Q. TWO

Ria Bond

MP Invercargill Q. ONE New Zealand First recognises the right of every New Zealander to equality of opportunity. In many cases, the real handicap to full participation in society by people with disabilities is not the disability itself, but environmental barriers, ill-informed attitudes, and inadequate support services. We need to promote policies recognising that people with disabilities are in the best position to identify and articulate their own needs. We also need to provide disability support services that facilitate independence and that are delivered after informed self-assessment wherever possible. Our vision for independence includes both physical and economic independence, thus recognising the importance of ensuring improved access to work for those with disabilities.

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Parent to Parent September 2017

New Zealand First supports initiatives and steps which work towards a more accessible New Zealand. We acknowledge the work of the Access Alliance. We would look to ensure the Office for Disability Issues has the resources to monitor and report on the full implementation of the Disability Strategy so that every New Zealander can participate fully in our society. Q. THREE New Zealand First understands that the Office of Disability issues is currently reviewing whether legislation would be a possible avenue for improving accessibility. It is important to look at other models and follow a consultation process. As discussed previously, New Zealand First would ensure that there are adequate resources to implement the Disability Strategy in a timely fashion, as well as strengthening the advocacy role of the Minister for Disability Issues. Q. FOUR New Zealand First recognises that a lot has been done by the Office for Disability Issues in recent years, including the Enabling Good Lives Strategy. However, we do not believe that the Office of Disability Issues is funded adequately enough to enact real change.


Election 2017 Q. FOUR

Kelleigh SheffieldCranstoun

A recent development is the establishment of a full-time Disability Rights Commissioner within the Human Rights Commission to provide advocacy for the disabilities community, working to achieve an inclusive and respectful society.

Mana Electorate

Te Ururoa Flavell

Q. ONE Inclusiveness needs to be normalised, and our leaders need to demonstrate inclusive attitudes. There seems to be little discussion in the lead-up to this election about promoting inclusiveness and addressing issues for those with disabilities. One of the driving issues for us is equality in opportunity for all. This means working with people to remove barriers so that everyone, without discrimination, has access to opportunities in order to participate fully in, and have a satisfying quality of life. Q. TWO With 1/4 of New Zealanders having some form of disability it is a campaign with goals that could have exponential benefits. United Future first introduced establishment of the Families Commission during the 2002-2005 government. This commission looks into solutions for the wellbeing of New Zealand families and has specifically identified that barriers to accessibility and negative societal attitudes adversely impact on those living with disability. There needs to be further action taken by the government to address these issues. People with disabilities are protected by the Human Rights Act. It cannot be left in large to the goodwill of charity, voluntarism, or underfunded resourcing to strive for equality in access and opportunity. Q. THREE We have specific ideas for improving accessibility and quality of life for those living with disability. We would support improved funding for early identification of children with special needs and disabilities and review the adequacy of the level of support and intervention that children and parents have access to. We would support a community based advocacy service for housing, employment and community inclusion pathways at an individual level. Overall though, we need to know that any new legislation improving inclusiveness is actually working. Our policy to introduce a 20-year impact review on all new government policies will be a way to safeguard future success.

MP Waiariki

Minister of Māori Development, Minister of Whānau Ora, Associate Minister of Economic Development

Q. ONE We need to continue to give those with disabilities, and their whanau the investment they need so they have more choices, control and flexibility over support and funding in their everyday lives. We also need to remove the barriers to employment to create more opportunities. We think the Ministerial Committee on Disability Issues that we established is providing improved leadership, coordination and accountability across Government and the Think Differently campaign has helped promote positive attitudes and behaviours towards disabled people. Q. TWO Any group that advocates for universal access and an inclusive society has my support. The Māori Party advocates and promotes full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. Q. THREE We are backing a review of employment laws to ensure those with disabilities are better catered for so more job opportunities arise to lessen dependency on welfare or other support. Q. FOUR There has been more emphasis placed on the Enabling Good Lives Strategy introduced by Dame Tariana Turia while she was Minister for Disability Issues. We believe this strategy gives the disabled and their whānua more control over their lives. We were pleased to see Enabling Good Lives received $27.1 million over the next three years in this year’s Budget and we want to see the approach taken nationwide with associated investment in Thinking Differently, Individualised Funding and Supported Living.

Parent to Parent September 2017

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People

Sport and fitness bring endless opportunities Photo: Jamie Wright

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orn with spina bifida, Maioro Barton has always been keen on physical fitness and activity. With five siblings who are also into sport, it’s fortunate they live only a stone’s throw from a fitness centre which sponsors him and where he spends a lot of time lifting weights and working out. Maioro, the second youngest of six children, started playing wheelchair rugby at intermediate school for the Waikato Men’s team until he changed his sport to focus on his goal of representing New Zealand in sport. “I was told if I wanted to represent New Zealand I would have to change my sport because I wasn’t disabled enough to play international wheelchair rugby. “So I gave wheelchair basketball a go. After a year of training and playing for the Waikato team, I was 13 when I was selected for the New Zealand U20 Wheelchair Basketball team and 14 when I played my first game for New Zealand.” At Hillcrest High School Maioro was part of the Physical Assistant Centre (PAC), a base for students with physical disabilities to have accessible toilets, kitchen, equipment, teacher aids, physio and occupational therapists. Each wholeschool athletics day, students from the centre held their own athletics competition, and he loved it. “One year after the school athletics day I approached Kerryn O’Brien who was in charge of the PAC athletics competition, and said I’d like to be involved in athletics outside school. She paired me up with then Paralympics athletics coach Bev

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Parent to Parent September 2017

Savage at Frankton Athletics and we trained for many years together.” In 2015 Maioro competed in Australia at its Junior Nationals and broke all its records for shot put, discus and javelin, qualifying him to compete at the World Junior Disabled Athletics Championships in Dublin. He was 19, competing in the aged 20-23 category – he came away with a fourth for discus and javelin, and second in shot put. In 2016 Maioro wanted a new challenge and his personal trainer encouraged him to compete in wheelchair body building in the NZ Wheelchair Bodybuilding Federation. “It was one of the hardest things psychologically I’ve put myself through. I prepared hard with training and dieting for 19 weeks. I had also just recovered from an operation.” With the all-clear from Waikato Hospital he was straight into training at Cambridge Fitness Centre under his personal trainer David Robson, also president of the NZ Wheelchair Bodybuilding Federation. Because of spina bifida, Maioro was wary of straining his back and damaging the titanium rods in his back with training, but his back muscles turned out to be his strongest asset. What added to the stress was featuring in a fitness magazine – and knowing it would be followed up with another story after the competition. “I didn’t want them to publish that I came anything other than first, so I trained hard and was committed!”


People

“I get up to some cool things, interactions with other people, how they perceive me as a wheelchair user, and how I change their minds”

Photo: Laura Jayne Cardwell

It paid off – he won his first competition and the People’s Choice. With a passion for international travel from competitions overseas, he’s holidayed in Hawaii, Arizona, LA, Rarotonga, Hong Kong, London, and earlier this year joined a group of Kiwi basketball fans to watch NBA games in Oklahoma City in the US and see Kiwi Steven Adams play. Maioro studied Sport, Recreation and Exercise Science at Wintec and has been working part-time in the recreation industry for the past 12 years. A sport programme facilitator and public speaker, he recently shared his story with 430 year nine students at Waikato Institute of Sport and Leisure’s

KELLY RD CAMBRIDGE LODGE

young leaders day. He’s also part of Rebel Sport’s ‘What’s Your Why’ campaign commercial with All Black Malakai Fekitoa, and has his own ‘What’s Your Why?’ on Rebel Sport’s YouTube channel. “I’m now looking for full-time employment using my qualifications. My ultimate goal in life is to get married, have children and build my own house.” Maioro still enjoys the ‘fast and physical’ and is training for the NZ Wheelchair Basketball nationals at Bay Park Arena, September 23-24. Follow Maioro at Facebook.com/MaioroBartonPublicFigure

Here at Kelly Rd Cambridge Lodge we proudly celebrate our local heroes. The style and comfort of each of our 22 rooms is complimented by one of their unique stories and exclusive artworks. Maioro Barton’s inspiring story is one we proudly showcase in one of our two fully accessible rooms. Maioro stayed with us and kindly worked with us so we can provide the best possible guest experience for those needing accommodation with full wheelchair access. Book your stay at Kelly Rd today and discover the many hidden gems the region has to offer. 1 Kelly Rd, Cambridge 07 282 0578 | stay@kellyrd.co.nz Book your stay online www.kellyrd.co.nz

Parent to Parent September 2017

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y e l ai

People

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Ko Bailey Phillipa Matchitt toku ingoa. Ko Lance Matchitt toku papa. Ko Gwen Matchitt toku mama. Horouta te waka. Te Whanau a Apanui te iwi. Te Ehutu te hapu. Kaakanui te maunga. Materuia te awa. Te Kaha te marae.

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Parent to Parent September 2017


People

Being ‘just Bailey’ is who she is By GWEN MATCHITT

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ailey is the youngest of four children, and turned 10 on May 30, 2017.

I was 42 and a bit shocked to find out I was pregnant. We all had to adjust to the fact that our family of five was going to expand. But by the time Bailey was born with the attributes of Down syndrome, Jayden was able to sum it up for us: “She’s my sister and that’s all that counts.” Bailey arrived in this world with some already established roles – her place in our whanangatanga means she’s a much-loved daughter, sister, granddaughter, cousin, and she’s now an aunty for the first time to her nephew Karmelo.

loves running and especially swimming. Noisy environments can upset her. She’s someone who enjoys her own company and we think that coming from a sporting family, in the future she might be supported to explore individual sporting pursuits rather than being part of a noisy team. Having said that, she’s been brought up in the netball community and loves running around with the other kids at the courts.

“We can see Bailey working and getting on with the usual day-to-day stuff that the rest of us are involved in.”

She is well known in our community, at school, around our netball courts and at the supermarket. She’s been part of all our family activities and gatherings. She’s ‘just Bailey’, and right now she’s cheeky and lovable. Bailey loves music and since birth has been surrounded by music of all genres; she loves the drums and to dance. She

Being ‘just Bailey’ means our community is learning all the time about embracing diversity. Our whanau’s openness about who Bailey is has supported others to be more open about their disabled family members. I know it.

I believe that having a good relationship with people in the education system is critical. So far Bailey has gone to her local kindy and primary school and learned alongside her peers, with support from the education system. I’ve had to be an advocate for her so she can access what the system is able to provide. Bailey was enrolled at kindy for a short time to enable her to meet the eligibility criteria for enrolment in the school of our choice. This school has no

Parent to Parent September 2017

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People

barriers to inclusion. They have a No Bullying policy which is reinforced. We’ve always said that no matter what school you go to, the student always has to make it work. Bailey plays her part in making school work for her. She’s a whiz on the tablet and computer, and technology has really helped her communication. She has learned to use Makaton sign and combines this approach with ‘Bailey Signs’. She also chatters non-stop – once you get to know her you come to understand she has a lot to say for herself. College awaits, and we’ll make a decision at the time as to where Bailey will be enrolled.

What do we want for her? We want all our kids to be fed and looked after, and everything else will be dealt with as we come to it. We can see Bailey working and getting on with the usual day-to-day stuff that the rest of us are involved in. We want her to have friends she has coffee with, money earned through work so she can make choices around lifestyle and independence, and for her to do what makes her happy. We want Bailey accepted for who she is. Bailey is Bailey. She is who she is.

There is an economic impact for parenting a whanau member who needs technology to assist with communication, glasses, hospital appointments, and a particular diet related to coeliac. Our employers have been brilliant in their support with our extra responsibilities connected with parenting Bailey.

Photos: Steven Mahoney

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Parent to Parent September 2017


People

Waikato athletes in junior games Waikato team leader for the New Zealand Junior Disabled Games Brenda Worsop and junior athlete Amy Dunn. Photo: Geoff Lewis

By GEOFF LEWIS

S

ixteen young Waikato athletes with disabilities have lined up to compete in the New Zealand Junior Disabled Games held October 6-8 at King's College in Auckland. Organised by the Halberg Disability Sports Foundation, the games will attract several hundred competitors from around the country with a variety of disabilities. They are placed in categories depending on their degree of disability to allow a fair contest. Sports represented include shot put, track and field events, wheelchair basketball and power chair football; a wheelchair rugby demonstration is scheduled for the Friday. Other events include Goal Ball, a game which uses a ball with a bell inside for visually impaired athletes, boccia, a version of the French bowls game petanque, swimming, table tennis and pop tennis. Waikato team leader Brenda Worsop, employed by Parafed Waikato, claims she was 'volunteered for the job' and started with a list of last year's Waikato competitors. Originally a 'Naki girl', Brenda has a Bachelor of Teaching and was working in Hamilton before suffering back and spinal cord injury which, four years ago, put her in a wheelchair. This forced her out of teaching as she had become, as she described it, “a moving hazard in the classroom”. “I was talking to (Parafed Waikato project officer) David Klinkhamer about how I could use my degree with the younger age group – little did I know what I was in for!” Amy Dunn, 17, is in her last year at Hamilton Girls’ High School and looking forward to the Games. She plans to compete in and enjoy athletics, pop tennis, archery and wheelchair rugby over the three days.

Amy, 132cm tall, is a delegate for Little People of New Zealand. Over her time in high school she has been to Outward Bound where she was introduced to sailing, and last year spent five days with the Spirit of Adventure exploring the Hauraki Gulf and Coromandel coast. She was introduced to para-athletics at a Paralympics Open Day in Cambridge where she met coach Alan McDonald and competed in the New Zealand track and field championships in March in the throwing events. With the Junior Disabled Games, Amy has the choice of competing or just taking part for fun. “I'm going in to be competitive in athletics and to have a go at everything else. In the evenings after the competition is over we can try different sports, and the power chair guys are coming to the auditorium and bringing videos and displays about what they do – it's a bit of hard-sell.” Because athletes with disabilities have a wide range of abilities, competitors are benchmarked against world records set by athletes with the same para-classification. Amy's best throw in shot put was 4.1 metres – or just under 40 per cent of the world record; in javelin she made 23 per cent and 27 per cent in discus. This year Amy has competed in the secondary school athletics championships in shot put and javelin at school, Hamilton area and Waikato level competitions. She says she enjoys the physical activity but it's not all about being competitive – win or lose, she's there for fun too. Her future plans include training to be an occupational therapist.

New Zealand Junior Disabled Games held October 6-8 at King's College in Auckland. Registrations closed August 28 but late registrations will be taken.

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People

Powering ahead to help others By MONICA HOLT

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hristchurch woman Claire Freeman is doing a doctorate on power chair use, hoping it will bring about design changes to help her and

others. A mistake during surgery reduced Claire Freeman’s mobility and took away her ability to work full-time. The surgery, at the end of 2015, was meant to stabilise discs in her neck, but she says it was a disaster after the surgeon put a screw in the wrong place. It was another setback for Claire, who 18 years earlier, had broken her neck in a car accident. With a C5-C6 incomplete neck injury, Claire is a tetraplegic and has used a wheelchair since. Now she’s lost even more movement in her arms and was forced to quit her job as a graphic artist and medical illustrator at the Canterbury District Heath Board.

Her doctorate explores the social and cultural meanings associated with power chair use. “A side effect from the surgery means that I will have to use a power chair and I am just exploring different power chair options.

“I look back on it as being a really positive outcome and I have learned about myself ”

“It was the worst possible result and it was unexpected,” says Claire. “It was devastating. “It was like it was all happening again. There was the paralysis, then more paralysis, and people looking after me.”

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“I look back on it as being a really positive outcome and I have learnt about myself,” Claire says of the failed surgery. “It has opened a lot of doors. And it is turning into a different career.”

“My first instinct was I did not want to use a power chair as it just felt like I was becoming a lot more disabled. That interested me that I had such a strong reaction not to use it. When I did some more research I realised I was not the only one feeling this way.”

Claire hopes her doctorate may influence power chair design, which she says has not evolved in more than 20 years. Claire has had many ups and downs since the accident. She’s dealt with depression, self- esteem issues, terrible pain, a marriage break-up, and surgery to remove cancer from her face.

But the setback has also created other opportunities for Claire, now in her late 30s. She is studying for a PHD through AUT and working as a guest lecturer.

An articulate, thoughtful and competent speaker, Claire has been called upon to give presentations to spinal injury patients both here and overseas.

She already has an Honours design degree from Massey University in Wellington; a post-graduate diploma in business studies and marketing from Massey; and a Masters in health science majoring in rehabilitation from Otago University.

Through the Burwood Spinal Unit, she has also been a mentor for many adjusting to life soon after an injury, especially young woman struggling with issues of sexuality and intimacy.

Parent to Parent September 2017


People

Claire lives in a new custom-built house in Mt Pleasant, in the Port Hills of Christchurch, with a pug griffon dog called Ralphy who she “loves to bits”. She moved away from the east of Christchurch after the 2011 earthquake. “I lived in a really bad area and there were tsunami risks, so I thought I would buy at the very top of the hill just in case!” Her good friend John Ottley, who she met soon after moving to Christchurch, visits most days and is both a support person and friend. Claire is caring, compassionate and driven, he says. “She is always good to talk to and despite everything she’s been through she always manages to see the good side to life. “My aim is to help her where necessary so she can achieve what she wants to achieve. Obviously she can't do everything herself so I help her so she can do her thing as seamlessly as possible.”

Photos: Supplied

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People Another door has recently opened for Claire – modelling for an Italian modelling agency. It all began when Claire started an Instagram page initially for her dog “because I was not working and had time on my hands”. “I started noticing Instagram pictures of other girls who used wheelchairs and they were in short skirts which I found really shocking as I had never seen that before. And I thought, ‘well if they can do it, maybe I could’. So I took some photos, just for a bit of a laugh, and chucked them up. “I started getting some really positive feedback, especially from girls who had just had their injury. They said it is really awesome that you look like you are out there doing stuff and you look really great.” Things snowballed and Claire got a message from a woman in Italy who runs an alternative modelling agency which takes on models with disabilities. “And who says no to an Italian modelling agency when they call!?” An opportunity has come up to travel to Italy later in the year to take part in a fashion show.

In the past, Claire has had frequent trips to Switzerland where her sister lives, but she says it is harder to travel now with her reduced mobility. She says she is grateful to live in a progressive country like New Zealand, where people like herself can live a relatively normal life. “Compared to the rest of the world I think we are doing a great job. “I’ve been treated very differently in Europe and in parts of Asia. I saw a lot of stuff happening in Europe which really disappointed me.” It is not unusual for people in New Zealand with disabilities to go out and live completely normal, independent and fantastic lives, she says. “So it means that if you have an injury it is not the end of the world, you can continue to have a really productive and meaningful life which you don’t always have in other parts of the world.” She lives by the mantra: “Life has given me lemons and I have made some really good lemonade.”

Opening up the catwalk I

ulia Barton S. r. l. s is an international fashion agency set up in 2016, creating opportunities for people with disabilities to become top models.

Based in Italy, the agency has recruited men and women – whether they are standing, in wheelchairs or amputees – presenting them to top fashion houses around the world.

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Iulia’s books. They have taken part in top fashion events like New York Fashion Week, and Milan Fashion Week. The agency project-manages fashion shows, often as a partner of not-for-profit agencies, as well as photography and magazine coverage.

It was set up by Italian Giulia Bartoccioni who had experience with fashion, PR and events.

So far more than 150 models from all corners of the world – including New Zealander Claire Freeman – have been signed on.

Striking styling and photography, as well as social media platforms like Facebook and Instagram, have helped raise the profile of many of the models on

One model, Julia Torla from Poland says, “I believe that the only disability in life is a bad attitude. Mine is always positive.”

Parent to Parent September 2017


News

NZ to join The Marrakesh Treaty

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ast June the Government announced it will join an international treaty – The Marrakesh Treaty – to improve access to written materials for blind and visually impaired New Zealanders. An estimated 90% of all written materials worldwide are not published in accessible formats, such as Braille, audio or large print. For around 168,000 New Zealanders with a print disability this is a barrier to participation in public life and restricts employment, educational and recreational opportunities.

According to the Ministry of Business Innovation and Employment, the Treaty will have the following benefits in New Zealand: •

More timely access to a greater variety of accessible format works for people with a print disability. This will improve access to education and employment, lifting overall wellbeing and allow more opportunities for people with a print disability to contribute to the economy.

Better value for money from existing resources (including the Ministry of Education, schools, libraries and prescribed bodies) to provide accessible format works for print-disabled people. Organisations will be able to more easily exchange works across borders, reducing the need for costly local production of works that have been converted into accessible formats in other jurisdictions.

Improved adherence to international obligations, including obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and United Nations Convention on the Rights of the Child (UNCROC).

Officially known as The Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled, it is an international framework enabling the reproduction and distribution of books and other literary works in accessible formats. It was adopted in 2013 in Marrakesh, and forms part of the body of international copyright treaties administered by the World Intellectual Property Organization. It has a clear humanitarian and social development dimension and its main goal is to create a set of mandatory limitations and exceptions for the benefit of the blind, visually impaired, and otherwise print-disabled.

A Parliamentary treaty examination process last July will be followed by law changes to ensure the benefits of joining the Treaty can be realised by New Zealanders with a print disability.

Parent to Parent September 2017

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People

Living with ‘Lucy ’

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obbie Francis is a 28-year-old PhD candidate, co-founder of The Lucy Foundation and adviser for the New Zealand Government’s Disability Strategy. She is also a finalist for Attitude’s Entrepreneur of the Year Award. Born and bred in Hamilton, Robbie lives with a condition called phocomelia, which means the bones in the lower half of her legs didn’t develop properly before birth. She learned to walk on a prosthesis, which became commonly known as ‘Lucy Leg’ and underwent further amputation and bone reconstruction surgery during her youth. From a young age Robbie knew she wanted to work for social justice. As an undergraduate student she travelled to India and Bangladesh to volunteer for human rights organisations and worked with victims of crime and trauma in Hamilton. She has worked in the disability sector as a support worker, researcher for Attitude TV and is on the expert reference group advising the New Zealand government on the 2016-2026 Disability Strategy. Her passion for social justice has taken her all around the world, including Israel, where she studied a Master’s degree in International Conflict Resolution and Mediation. She is currently studying at the University of Otago researching the experiences of disabled people during war and displacement. Robbie acknowledges that she grew up in a world of privilege

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Parent to Parent September 2017

and opportunity. But things could have turned out very differently – a thought that hit home after working as a disability rights monitor in Mexico City in 2013. During her internship she witnessed horrific human rights abuses against people with disabilities. She quotes the words of Kiwi singer Brooke Fraser: “Now that I have seen, I am responsible.” Upon her return to New Zealand, Robbie and her friends decided to create The Lucy Foundation, named after the one and only Lucy Leg. The Lucy Foundation is a New Zealandbased charity made up of a group of young people who are using business to raise awareness about inclusion, accessibility and the rights of people with disabilities around the world. The Lucy Foundation’s first project is based in Oaxaca, Mexico. In 2016, field directors Jessica and Ryan Sanders, with their two children, packed up their lives in Hamilton and moved to Pluma Hidalgo – an isolated coffee farming village, high in the mountains of Mexico. The aim of the coffee project is to transform the global coffee industry by developing a sustainable value chain of coffee that is not only good for the environment, the community and the economy, but is also inclusive of disabled people, from seed to cup. The Lucy Foundation works with indigenous coffee farming families, all affected by disability, to help them increase the quality and quantity of their coffee. It also helps disabled family members to become trained and employed within the local coffee industry through beekeeping, barista coffee


People

“...we’ve seen families engaged... and disabled people are being trained and employed.”

training, coffee tours, coffee harvest and agricultural workshops that help local farmers learn how to revitalise their soil so they can grow strong and healthy coffee plants. The coffee is then exported to New Zealand to be sold in leading cafes and to coffee drinkers directly. The aim of The Lucy Foundation is to ensure the New Zealand partners they work with are inclusive and sustainable as well. Cafes, roasteries and distributors all have an important to play in increasing awareness about inclusion, equality and human rights. According to Jessica, they’re already seeing amazing results. “In just one short year we’ve seen families engaged, an improvement in the health of the soil, the coffee plants are stronger, and disabled people are being trained and employed,” she says. Now that the first lot of Pluma coffee has safely landed in Aotearoa New Zealand, The Lucy Foundation can expand its operations in New Zealand. “It’s a small, but very precious batch of ethical, environmentally friendly and inclusive Pluma coffee that proves our business model works. Now we want to expand and grow. More coffee, more business, more people engaged, more impact!” Robbie says. Photos: Suppllied

www.thelucyfoundation.com

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People

Taekwon-do squad trains for world champs

By CLARE CHAPMAN

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team of 15 special needs competitors aged 10 to 38 is heading to the Taekwon-do World Championship in Argentina in 2018, led by Hawke’s Bay instructor Ben Evans. CLARE CHAPMAN talked to Ben about why the sport holds a special place in the lives of people with disabilities.

Taekwon-do, a fusion of Japanese and Korean martial arts, has ancient origins, but was only readily accepted as a sport in 1955. It teaches not the only the physical nature of the practice, but centres on five values: courtesy, integrity, perseverance, self control and indomitable spirit – all concepts Ben says can be used across every area of life.

Ben started taekwon-do aged seven and today, 20 years on, is one of New Zealand’s leading instructors with a fourth degree black belt and whose passion is now a full-time teaching job.

He says the sport has given his life a clear purpose and direction. “It’s a really grounding thing for me. It’s taught me a lot as a person.”

He began by teaching taekwon-do to kids with disabilities at Havelock North High School as a 16-year-old student at the school. “I loved it right from the start,” he says. “In 2008, I left school and they [his students] asked if I wanted to keep going so I just carried on teaching. When you see those kids smile and see the pride when they achieve something; that’s why I do it.”

It’s also something he sees in many of his students as they develop a love of taekwon-do.

His special needs classes provide him with fulfilment. “Seeing these children achieving things they didn’t realise were possible – and how the skills they learn in taekwon-do transfer into different aspects of their lives, is just amazing. It’s such a positive thing,” he says.

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NZ special needs squad receives standing ovation World Championships. Photos: Supplied

Parent to Parent September 2017

“For the special needs classes I teach, I’m passionate about it because I know that it can make people’s lives better. “For example, especially with children with autism spectrum disorder who often struggle with social interactions, they seem to revel in the practice and take the skills they learn here into all areas of their lives.” His special needs classes don’t involve sparring with another person, but are instead focused on the mastery of routines, physical moves, and structured around memory and repetition. “It’s about learning patience and tolerance, values


People that really do relate to all areas of life.” Classes cover a range of ages and abilities – his youngest students are aged five and six, while some are in their senior years; suitable for people in wheelchairs, differing levels of ability, and providing particular benefit to people struggling with mental health issues. One team member, 25-year-old Aidan McCance who has autism, is a black belt. “Before I started taekwon-do, I felt like I was the odd one out. Even when I was in the special needs unit [at school] I found it hard making friends, but ever since I joined taekwon-do I have felt more social and more independent in working with other people, both with special needs and in the mainstream. I felt like I was adopted to the sport,” Aidan says.

Ben’s got his sights set high. Next July, for the second time, he heads to the Taekwon-do World Championship in Argentina. He’ll chaperone a team of eight mainstream students alongside 15 special needs students competing in the secondever dedicated special needs event. The squad qualified earlier this year to perform on the world stage after going up against more than 150 others across the country. They will compete in three events; Mixed Abilities, Patterns, and a Team Event.

To keep up to date with the Special Needs Taekwon-Do Federation Of New Zealand team as it trains for the World Championship visit www.specialneedstaekwondo.nz

“For the special needs classes I teach, I’m passionate about it because I know that it can make people’s lives better.”

Top: NZ special needs squad in action on World Championship stage. Bottom: Mainstream, and special needs squad representing NZ.

Johann Landroon, left, proud to meet Korean ITF Presiden Choi Jung Hwa.

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Siblings

Sharing a special brother-sister bond By TYL’A WAETFORD-MCGRATH

W

hen my mum was 28 weeks pregnant, my brother was born due to a careless driver cutting in front of us at a roundabout. This caused my mum’s seatbelt to tighten and rip the placenta. Since this day everything has been full throttle. My brother Cullen was born three months premature; he suffered hypoxia which is lack of oxygen to the brain, causing him to develop cerebral palsy. Cerebral palsy is defined as a condition marked by impaired muscle coordination, typically caused by damage to the brain before or at birth – it cannot be cured. When Cullen was born he was only 2 pounds and 9 ounces, just weighing over two blocks of butter. I knew he was sick, but from that day on I had a brother, even ’though he was fighting hard to stay with us, I knew he would be around for a long time.

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Time passed and after nearly three months, and two different hospitals, one determined little boy finally got to come home and that’s when the party began. When he was diagnosed with CP my parents and I were told he wouldn’t be able to do a lot of things, walk, talk, and that we would have to wait and see what the outcome would be as he would need constant care and medications every day. That’s just the surface of what my brother is; CP is a diagnosis, but it doesn’t define who he is. Cullen and I share a special bond; it’s not like any other siblings can describe – except other siblings who have a brother or sister with a disability. He has a few funny habits I have learned along the way – he likes the feel of cheese slices on his feet, he likes the feeling of putting his fingers on your tongue because of the sensory feeling, he likes rubbing noses with me as a sign to say goodbye, he likes feeling walls when we walk past as he likes to feel new things because it’s the way he learns, and he loves annoying both of his sisters, a lot!


Siblings

Photos: Supplied

Having a ‘special’ brother is awesome, but also very tough. He has been in and out of hospital all his life and it has been touch and go so many times. He has spent at least four birthdays in hospital; I also have celebrated my birthdays in hospital with him. One day it was my friend’s birthday, but I chose to go to a first aid course to know how to deal with Cullen if he stopped breathing through one of his seizures. Sometimes you must sacrifice fun for family and I am always happy to do so. Sometimes it feels too much to handle knowing your sibling is so sick that you reach for their hand and it feels lifeless because they are unconscious from drugs. Seeing Cullen in hospital at his most vulnerable never gets easier knowing you can’t do anything to help him.

“Yes, my brother is different, he is unique, he is handsome, he is smart, he has the best cuddles, he is everything I want in a brother”

I was told by my parents that other children my age shouldn’t have to deal with these types of things, but it made me mature and grow up faster at a younger age and it has certainly helped me deal with situations a lot better. My brother has opened a whole new perspective to society that I would never have known without growing up with him. A chunk of people that are so overlooked in society because they are looked upon as different or less than ‘normal’. Yes, my brother is different, he is unique, he is handsome, he is smart, he has the best cuddles, he is everything I want in a brother. Cullen is the reason I became a teacher aide; Cullen is the reason I am now a SibSupport leader for Parent to Parent; Cullen is the reason I am studying to become a nurse. I am everything I am now because of Cullen. He has moulded me into a better person and for that I will forever be grateful to him. Love you Cullen, Your big sis Tyl’a xx Parent to Parent September 2017

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Siblings

Siblings

Speak out

on social media Earlier this year, Thames girl Indie Oliver-Clarke experienced a deep loss when her dear brother Leon passed away. Since then, Indie has pondered her feelings and thoughts in relationship to Leon and now feels she owes it to him to encourage others to show understanding and kindness rather than using words with disrespectful connotations to people with disabilities and health impairments. Indie recently posted on Facebook her perspective on namecalling, and it encouraged her friends Tyl’a Waetford-McGrath and Brittany Davis-Havill – who also have a sibling with a disability – to post their thoughts on the issue. Their heartfelt posts are receiving an enormous amount of positive feedback, and it’s inspiring to see New Zealand youth use social media to share their messages to the world.

“Mocking someone by putting on a stupid voice or calling them Down syndrome because you think it’s funny isn’t cool ...”

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Indie Hey guys, I wanted to put something out there for everyone to think about. I feel I owe it to my brother and others like him to say something. Next time you go to call someone a retard, think about what you’re actually saying. A long time ago that word was used to define a person with an intellectual or physical disability, but now we have altered its purpose to have a derogatory connotation that we seem to use to put someone down. Whether you mean to have that connection to its original definition or not, you are still being incredibly disrespectful and indirectly hurting those who do live with a disability and the people who love and surround them – and they do not deserve it. Mocking someone by putting on a stupid voice or calling them Down syndrome because you think its funny isn’t cool; it doesn’t matter if you mean it as a joke. Please, I urge you to take this in and think about it. As a person who grew up with a brother who had special needs it feels personal every time I see it happen, like you’re directly putting him down. And there are so many more siblings and people out there who feel them same. Please think about it, thanks. Just want to make you proud LJ xx

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oung women who have a brother or sister with a disability are on social media saying ‘NO’ to the use of derogatory terms such as ‘retard’ and ‘spaz’.


Tyl’a

As most of you know my brother has special needs – cerebral palsy to be exact – and I feel as his sister I am responsible for making people more aware of how stupid names and slang can affect people.

Indie has reminded me of the poor use of the word retard in society and how much it has become a part of our everyday language. I hear this word at least once a day. The word retard used to define a person with an intellectual or physical disability, but now is being used to label someone when they’re either doing something stupid, if they muck up a simple task, or if they’re slow at doing something they must be a retard. I want you guys to really think about what you are saying when you say this to someone. Having a brother who does muck up simple tasks because the messages from his brain to his senses get jumbled up, having a brother who does take longer to reply to simple questions sometimes because his processing time is a bit longer than usual, isn’t something to make fun of! My brother and Indie’s brother are the most loving people I have ever met, and working as a teacher aide at a school full of children with special needs has opened my eyes to a whole different aspect of society that people don’t get to see. It’s not cool to say someone is a downie (Down syndrome) when they can’t do simple tasks! I mean, come on guys, we live in 2017! You’d think people would be more considerate of others by now, but until then, us siblings will always be there to stick up for our siblings – whatever it takes Love and miss you Leon.

Siblings Brittany Special needs. What does that mean to you? For people like Indie, Tyl’a and I, it means we get to be big sisters to some of the most beautiful people in the world. But for others of you it means retard, it means spaz, downie or extra. It’s nothing more than a way you mock others or tease your friends when they do something out of the ordinary. Having Tuscany as my sister is one of the biggest privileges I have in life, but I also have a duty as her sister to spread awareness. The labels like ‘retard’ have become too common, the whispers and laughs at others in society just because their brains aren’t wired the same as yours is something I see all too often. And trust me, for siblings like us, we feel protective of all people with special needs. I can’t explain why, but something inside us catches when we hear people talking like that, as if it was to our own sibling. For those of you who have met Tuscany, Leon, or Cullen you know how much richer and more beautiful the world is for having them in it. We as siblings are their voices and my voice is telling you to think about how you express yourself, what you say and who you are labelling. We miss you Leon, but what you brought to this world and the impact you had on people is something that will always be cherished. Parent to Parent thanks Indie, Brittany and Tyl’a for allowing us to share their messages. These inspiring young ladies have attended our SibSupportNZ programmes over the years, and two have gone on to become sibling leaders. It is amazing for us to see them bond together and we hope we can help form the same special connections with future siblings in the SibSupportNZ programme.

WE PROVIDE MEMBERS WITH ACCESS TO: • • • • •

Physical and emotional support Experience, knowledge and expertise Financial contributions Neuro-developmental Therapy Programs Resources and equipment

Parent to Parent September 2017

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Opinion

Sometimes in life you just have to eat your words. I’m glad I did.

By ALLY ATTWELL (QSM)

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n 1998, I was pregnant with twins. At my 20-week scan, my world stopped turning. I was told to prepare myself for losing one of the twins or having a child with Down syndrome. I went to a friend’s house to digest this information over a large block of chocolate. “I would rather have a child die than have a child with Down syndrome,” I told her. Tragically, Allysha died at 23 weeks. Kryssanna was born and fought hard during her 13 months of life. I was still mourning the loss of my babies when I decided to visit a clairvoyant who told me not to have any more children. If I was to have another child it would have a chromosomal abnormality. She also told me to move away from the disability sector’.

“When people saw my daughter, they no longer saw a little girl in a wheelchair – they saw a clever wee girl who knew how to sign.”

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Of course I thought, “no one tells me what to do”. Less than 12 months later Tarryn was born. The clairvoyant was right. Tarryn was born with a chromosomal abnormality – Trisomy 21 (Down syndrome). When my chocolate-loving friend heard the news she said, “Maybe God only heard half of your conversation and thought you wanted a child to die and have a child with Down syndrome.” Humour is what gets you through the day.


Opinion

Doctors told my husband and I to expect very little from Tarryn. They told us she would be more susceptible to sickness and need support for the rest of her life. I thought my life was over. My friends would talk about all the things they would do when their children left home. I dreamed of this too. Except all I saw when I looked at my daughter were shattered hopes and dreams. I had no hope of ever holding down a job, ever owning our own home or going out with friends. My life as I knew it was over. I was going to be stuck at home for the rest of my life. Isn’t it lucky you can eat your words? When Tarryn was seven, I decided to stop acting like a victim and choose her as my daughter. This decision changed my life.

in a wheelchair – they saw a clever wee girl who knew how to sign. People would ask, “Wow is she using sign language? I’ve always wanted to learn”. Tarryn now had a tool to fully express herself with. If she wanted to tell us about her day, she could, or the latest movie she went to see. She had the confidence she needed to access the WORLD.

“Every child is unique. If we think about it, we as parents and teachers adjust our communication style for each child we care for.”

When I looked at Tarryn with fresh eyes, I saw that she struggled to speak but had an enormous drive to communicate. Her hands led the way. So I learned New Zealand Sign Language at night school – and Tarryn picked it up and started using it. That was the key that unlocked so much potential. When people saw my daughter, they no longer saw a little girl

We think of Sign Language as a tool solely for deaf people, but it helps anyone who has difficulty with speech and/or expressive language impairment. When New Zealand Sign Language became an official language in 2006, I started advocating for it more strongly for children with disabilities.

In 2007, I founded Voice Thru Your Hands to encourage us all to use more visual communication. Unfortunately, after nearly 10 years of advocating, it was time to close our doors. Over time, I learned from Tarryn – her wishes, her style, her interests, and her friends. I learned when and what to fight for, what was important and what was best for Tarryn and our family.

Parent to Parent September 2017

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People

“I saw more similarities between Tarryn and her sisters Chalyce, 20 and Kyndra, 15, than differences...”

Photos: Supplied

Today, Tarryn is 17. She gets invited to friends houses, sleepovers, and hangs in town with friends. She’s been to Australia with her local cheerleading team. She is planning her big OE, flatting and has her work experience all sorted. I saw more similarities between Tarryn and her sisters Chalyce, 20, and Kyndra, 15, than differences. In fact, every child is unique. If we think about it, we as parents and teachers adjust our communication style for each child we care for. And we’ve found a sign-based communication works for Tarryn and a wide range of children. It is now 2017 and it is time to move from advocacy to action! My message is simple – sign language is for everyone and even basic sign language can make a big difference to anyone with speech and/or expressive language impairment. Because of Tarryn I found my passion and went on to complete a Bachelor Arts in Linguistics/Education and a graduate diploma of early childhood education.

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Parent to Parent September 2017

Currently I am studying towards a Masters of Education with endorsement in Special and Inclusive Education. This is my way of moving into ACTION! My research is going to look at teachers’ perceptions and experiences of implementing sign-based communication within an early childhood centre. I have come from being a victim to someone who is empowered to make a difference. Like me, it could pay to take a second look. You could become a change agent too. This could be your opportunity to find out how cool it can be to be wrong. Ally Attwell, DipBus, from Universal College of Learning (UCOL), BA Linguistics, from Massey University, GradDip Tch (ECE) form University of Canterbury. Founder of Voice Thru Your Hands (2007-2017), member of Parent to Parent for 19 years, also an active member within the disability sector. Ally set up Connect & Inspire, while studying towards a Masters of Education (Special and Inclusive Education) at University of Canterbury.


Global

Life in transformation: Maya’s story Photo: cbm

By STEPHEN HUNT

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aya lives in the Kushinagar District of Uttar Pradesh, one of the largest, most populated regions of India, and home to the poorest people in India, most of whom rely on agriculture for a living. She has been associated with cbm New Zealand’s Inclusive Organic Farming Project since 2012. This project brings together people with and without disabilities from rural communities to create sustainable livelihoods. In February 2017 it was recognised for innovation and inclusion by the Vienna-based Zero Project. The Zero Project provides a platform where the most innovative and effective solutions to challenges that persons with disabilities face around the globe are shared. Each year the Zero Award focuses on a particular theme from the UN Convention on the Rights of Persons with Disabilities. In 2017, 213 nominations were received from almost 100 countries. The cbm New Zealand Inclusive Organic Farming Project was selected as the most innovative in its approach to employment and vocational training. Maya, aged 36, is a single mother of four and the family’s only breadwinner. When she was five she was infected by the potentially deadly polio virus, which left her permanently paralysed, unable to stand or walk on her own.

When she joined the project she was the first woman with a disability to join the group in the village, and started working towards becoming independent and take on the role of ‘man’ of the house. The project provided her with training on marketing and packaging organic spices, which she sells in her shop, along with vegetables and produce she buys from other farmers in the area. It also facilitated access to support from the government. Maya now has a customised wheelchair-styled tricycle which enables her to travel to her field on the outskirts of the village where she grows vegetables, using customised tools. She owns her own solid wooden shop, located conveniently outside her own home, which was financed through a group loan and her own savings. The project enabled Maya to become financially independent and she now teaches the benefits of organic methods of farming and using chemical-free manure, as well as how to save money. Maya now talks about her desire to upscale her operation of packaging organic produce that she sells both in the local market, and to the community in the village. Training in organic farming methods given under the cbm New Zealandsupported project has helped her revive the productivity of her small family land. Benefits for Maya include food security and a steady income. This project provided financial security for Maya and her family, establishing her as a strong voice in her community and transforming her life.

For a single woman with a disability, her story is inspiring. Maya lost her husband to tuberculosis so had assumed responsibility of raising her four children. She had no marketable skills, no money and only a primary school education. She felt she had no options and was worried about how she would afford to feed and educate her children.

cbm is an international Christian development charity working with those who have the double disadvantage of living in poverty and with a disability. In 2016 it provided 991,203 operations to more than 45.4 million people in 65 countries. www.cbmnz.org.nz

Parent to Parent September 2017

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Global

The Hartmans (from left) are Gordon, daughter Morgan and wife Maggie.

Father builds US$51 million theme park for daughter with disabilities

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organ was 18, but with the mental capacity of a five-year-old. She wanted to play ball with children in the pool, but they didn’t know how to talk to her and just left. That got her father Gordon Hartman thinking. It had been some time since he sold his real estate development business and he was figuring out what to do with the second half of his life. Deciding to create an environment that could dissolve the barrier between people with and without disabilities, he created the world’s first ultra-accessible theme park – Morgan’s Wonderland – in San Antonio, Texas. At the beginning he had no idea how to create such a place, so

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he asked therapists, teachers, and people with disabilities. The top concern was safety – not just the safety of the rides. Children with autism, for example, are often a flight risk, so the park offers GPS trackers for visitors. The park’s 26 attractions including swings, a Ferris wheel and train are accessible to people with a range of disabilities; a carousel has been adapted for use with a wheelchair. However, the park’s biggest asset is its atmosphere. The majority of visitors don’t have disabilities, but both visitors and staff know the point of the park. “It’s about everybody being able to play together,” Hartman said.


Global

Photos: Supplied

“Everybody is patient ... you can ride the train seven times if you want to ... that consistency is what they like.”

Unusual requests are not just tolerated, but expected. “Everybody is patient,” he said. “You can ride the train seven times if you want to. We have some children who just stay on the train the whole time. That’s what they want. That consistency is what they like. At another place, could they do that?” Hartman also keeps the park under capacity to prevent crowds, which could be, for example, an insurmountable obstacle for those with autism. Earlier this year he extended the 10ha theme park to include a 1.2ha splash park called Morgan’s Inspiration Island. Besides being barrier-free, it provides waterproof wheelchairs for children who may never have had the opportunity to play in water. Hartman runs the park as a non-profit. Anybody with special needs has free entry.

“If you say you have special needs when you come to the front, you get in for free,” he said. “We figure if you lie about it, you have a special need.” For others, a full-access day pass costs US$21-US$27. The park runs at a loss, but continues thanks to donations. Since it’s opening in 2010, it has attracted over a million visitors from all states and more than 60 countries. Adapted from an article by PETR SVAB, Epoch Times

The Gordon Hartman Family Foundation, established in 2005 by Gordon and wife Maggie Hartman, provides financial assistance to non-profit organisations providing services and programmes for people with disabilities in the Bexar County area, Texas.

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Wellbeing

Steps for sound sleep By SUE PAIRAUDEAU

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aving trouble getting to sleep or staying asleep? These steps, based on research, are known to help adults who do not have a clinical sleeping disorder. Many also relate to babies, children and teens. A cool, quiet, dark room. A room that is cooler, rather than too warm, is best. Research shows sleep hormone secretion and sleepiness is associated with a drop in body temperature, so avoid hopping into a very warm bed. Ensure curtains block out all artificial light. Achieving quietness is often beyond our control, so do what you can. Fresh air. Partially open a window (without compromising safety); a fresh, gentle breeze can be soothing. Pets. Human beds are not pet beds (although some people prefer the company). Give dogs and cats their own beds, and shut the door if necessary. Reclaim your leg space!

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Warm milk, which contains tryptophan, a precursor for the sleep hormone melatonin, may help. Caffeine and nicotine. Avoid the stimulants coffee, tea, soft drinks, chocolate and nicotine for four to six hours before bed. Sugar. A sugar rush will not induce sleep. Your body will not use it, but store it in fat cells. Alcohol. Many people believe alcohol helps them sleep, but it affects sleep quality and can result in early waking (like a regular 3am). Avoid four to six hours before bed. If you start waking at a silly hour regularly, you’ll know why! Baths. A hot bath one or two hours before bed can help promote sleep by raising your body temperature; the slow drop in body temperature after your bath causes you to feel sleepy. End-of-day rituals. Develop rituals to remind your body that it is time to sleep; a cup of chamomile tea, relaxing stretches, breathing exercises or progressive muscle relaxation just before bed.

Comfort. Everyone has their idea of the perfect bed and pillow, so make sure what you spend 1/3 of your life on is comfortable. Chose comfort and quality of sleep over aesthetics.

Ditch the clock. Many people with sleep difficulties watch the clock. This initiates a stress response, which then keeps you awake. Digital alarm clock displays casting a glow over the room negatively impact on sleep hormone secretion.

Eat well. A healthy, balanced diet helps sleep, but timing is important. An empty stomach at bedtime can be distracting, while heavy meals before can interrupt sleep.

Bed is for sleeping. Try not to use your bed for anything other than sleeping (and adult time) so your

Parent to Parent September 2017


Wellbeing

body associates bed with these activities. If you watch screens in bed, your body will not establish this vital connection. Children in particular should not have screens in their bedrooms. Turn off before you tuck in. Texting and any other device use after lights out decreases sleep quality and time, and dramatically increases daytime sleeplessness. Get up and give it another go. If you haven’t been able to drift off after 20-30 minutes, get up and do something calming or boring until you feel sleepy. Read something non-stimulating in moderately dim light (without straining your eyes). Avoid television, computer or phone. Regular sleep routine. Go to bed and get up at about the same time every day, even when you don’t have to. A regular sleep rhythm helps reset your body clock. There is no rule saying ‘on Saturdays you must sleep in’. Nana naps. If you can’t make it through the day without a nap, make sure it is for less than an hour and before 3pm. Exercise. Regular exercise helps support a good sleep, but not strenuous exercise in the four hours before bed. Morning exercise doubles as ‘me time’ to plan your day, and energises for hours afterwards.

Daytime routine. Even after a bad sleep, don’t avoid daytime activities because you feel tired, as it can reinforce sleeplessness. Magnesium. It relaxes the body and brain, so is used as a natural sedative due to its effect on neural excitability and as a muscle relaxant. Both are considered essential for treating normal sleep patterns affected by stress.

Sleep survey A team of researchers at the University of Canterbury are undertaking a project to help researchers understand parents’ perceptions of the nature and cause of sleep problems in their children with autism spectrum disorder (ASD) and their experiences with interventions. If you have a child with ASD who has sleep difficulties, you are invited to complete this survey. You can access the survey by following this link: http://canterbury.qualtrics.com/jfe/form/ SV_6RxLRkQFBKC0u7b For further information contact Laurie McLay on laurie.mclay@canterbury.ac.nz

WIN

Contact Claire at New You, tell her why you need flotation treatment and go in the draw to win a FREE FLOTATION THERAPY SESSION

Parent to Parent September 2017

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Welcome New Faces

Louise Ratcliffe – Information Officer

Louise is keen on helping people be their best selves, and on teaching society to be more understanding and accepting of those of us with disabilities.

to undertake her own study to learn about ASD in children, and how best to support them at school and at home, and this in turn led to using Parent to Parent as a resource for her own education.

She gained a science degree in Applied Ecology in the UK, and then worked in various administrative positions before immigrating to New Zealand with her husband. Since 2004 she has been a HouseSpouse, running the household, raising three children, and managing a menagerie of pets.

When the role of information officer at Parent to Parent came up she decided to take the leap into the workforce after nearly 12 years, as the job combines her desire to help and make a difference in people’s lives, along with furthering her own knowledge on disability.

She developed an interest in understanding neurodiverse children when her own children started school and she began volunteering as parent help in the classroom, assisting teachers and supporting some of the more challenging children. This led her

Louise is looking forward to becoming part of the amazing team at Parent to Parent and hopes to contribute to the great work it does.

Elaine Gutteridge – Auckland Regional Coordinator Prior to becoming a passionate advocate for children with disabilities as a parent and then staff member at Parent to Parent, Elaine previously worked as production co-ordinator and client liaison manager for a number of advertising and event companies in the UK. Coordinating, communicating and responding have been cornerstones of her professional life. After spending many years travelling, and working in Hong Kong and Australia, Elaine lived in Singapore with her husband and started a family. Arriving in NZ in 2003 with two young boys, one was diagnosed with autism after six months. Elaine has since been involved with a number of disability stakeholders over the past decade,

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Parent to Parent September 2017

supporting families through numerous organisations from kindergarten, special needs units and school committees. Elaine’s first contact with Parent to Parent came when her son attended SibCamp 10 years ago. He is now a trained Sib leader, and Elaine is passionate about supporting and developing the SibSupport programme alongside Parent to Parent’s other services through her role as regional coordinator in Auckland’s rapidly growing region. “It is important to me that families never feel alone on their journey”.


Nourish

Homemade Strawberry or Chocolate Banana Popsicles Prep Time: 10 mins + Freezing time | Makes: 6 popsicles Strawberry Popsicles 140g strawberries (fresh or frozen) 1/2 cup milk alternative 60ml (1/4 cup) coconut yoghurt 1 tsp vanilla essence 2 tsp pure maple syrup Chocolate Banana Popsicles 1 small banana 3/4 cup milk alternative 1 tbsp cocoa powder 1 tsp vanilla essence

Method Strawberry popsicles: Chop the strawberries and then blend with the rest of the ingredients until smooth. Pour into 3 x 85ml popsicle holders and freeze until solid (about 4 hours). By ALANA at

Chocolate banana popsicles: Blend the ingredients together.

A Little Bit Yummy

Pour into 3 x 85ml Popsicle holders and freeze until solid (about 4 hours)

Alana is an experienced allergy friendly cook who specialises in low FODMAP, gluten-free, dairy free and nut-free recipes. She understands how important creating delicious allergy friendly food can be for families.

Parent to Parent September 2017

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Out and about

Memorial Park accessible playground in Palmerston North.

Photo: Supplied

Park playground for all abilities

N

ew equipment at Palmerston North's Memorial Park playground enables children with access and disability issues to join in, while also working for most able-bodied children. 2016-17 submissions to the council's annual plan asked for more accessible playgrounds in the city. The park already had a wheelchair swing, but it was locked up, and people had to arrange to get the key. As a result, council spent an extra $80,000 improving access to reserves for people with disabilities, with at least $20,000 earmarked for Memorial Park, The latest play equipment, installation costs and matting came to just over $120,000. The gear includes a wheelchair trampoline, a basket swing, an accessible carousel, log climbing, tunnels, and various interactive play boards suitable for visual and hearing impaired, or children with autism. It is located among other play equipment to promote inclusiveness.

Blake Evans enjoys the basket swing with grandfatherRoger Johnston at Victory Park, Plimmerton, Porirua. Photo: WARWICK SMITH/STUFF

playable porirua project

T

he vision of Porirua City Council's Playable Porirua Project is to create “a playable city where all children can play together in the region's playgrounds and parks, whatever their abilities or disabilities”. Community groups Plimmerton Rotary and Plimmerton Inner Wheel originally approached council with an idea to make one or two of the region's playgrounds more wheelchair-friendly. Coincidentally, at about the same time Otago University researchers asked council to carry out an assessment of the region's parks, so the idea grew into a project to review and improve all 41 Porirua playgrounds. The university has designed and piloted a survey tool that Rotary and Inner Wheel members are now using to evaluate Porirua parks. It's a community-led initiative. The information will be collated and analysed by the university. Council will consult with Porirua residents with disabilities and their caregivers on what needs to be done, and then work with Rotary and the Inner Wheel to fund and implement necessary improvements. “It's an ongoing project. The public will start to see results over the next few years, mainly around access pathways and new, accessible pieces of play equipment, but there are likely to be many other small changes too,” said council’s parks manager Olivia Dovey.

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Parent to Parent September 2017


OUT AND ABOUT

• RENTAL VEHICLES • FREEDOM • INDEPENDENCE • MODIFIED CARS • HAND CONTROLS • FAMILY OUTINGS • APPOINTMENTS

0800 864 2529 www.freedommobility.co.nz

Out and About is a regular advertising feature showcasing disability friendly recreation, accommodation and events throughout the country. To advertise talk to Carey at advertising@parent2parent.org.nz Parent to Parent September 2017

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For kids aged 8-18 who have a sibling with a disability. Make friends and share stories with siblings in similar circustances. UPCOMING SIBSHOPS

UPCOMING SIBCAMPS

• Coastal Bay of Plenty, 18 Nov 2017, venue tbc

• Auckland, 23-25 Feb 2018, Camp Adair

• Southland, 25 Nov 2017 , Adventure Southland

• Waikato, 16-18 March 2018, Pirongia Forest Lodge

Contact | 0508 236 236 | www.parent2parent.org.nz

164497

If undeliverable please return to Parent to Parent, PO Box 234, Hamilton 3214