Parent to Parent March 2018 Magazine

NEW ZEALAND’S FAMILY DISABILITY MAGAZINE

March 2018

It’s a colourful world p4

Celebrity Art Auction 2018 p7

First real friend p10

Column by Hon Carmel Sepuloni

Waiting for Cook Strait p14

Kia ora readers...

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t is important parents/caregivers and families/whānau have a strong voice as the disability sector is steered into significant system transformation based on the Enabling Good Lives (EGL) vision and principles.

It requires considerable input from organisations such as ourselves to ensure our services are relevant to the needs of families living with disability, their communities, and New Zealand. Thinking differently about disability will see us shift to become a more inclusive, accessible country where diversity is welcome.

We’ve been honoured to host opinion columnists who are thought leaders and advocates in New Zealand’s disability sector – people with and without disabilities. Last December we welcomed Disability Rights Commissioner Paula Tesoriero as a regular columnist, and now we are delighted to add Disability Issues Minister Hon Carmel Sepuloni. As this edition went to print we were following the 2018 Winter Paralympics in PyeongChang and look forward to welcoming Paralympics NZ as a regular columnist in June.

Help us empower Kiwi families to lead good lives Editor: Sue Pairaudeau Editorial: Staff writers, guest contributors, and freelancers Monica Holt and Clare Chapman Advertising: Carey McLaughlin Graphic design: Te Reo Hughes, Steven Mahoney Cover: Desiree Thompson’s photo of her daughter, Anahera 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. Parent to Parent NZ cannot endorse services or products in paid advertisements.

It is fitting we acknowledge the passing on March 14 of visionary physicist Professor Stephen Hawking, 76, at his home in Cambridge, England. Much of his work was in the field of cosmology, a deep-thinking branch of astronomy that examines the totality of the universe, and his cosmic brilliance has changed science forever. However Hawking, a wheelchair user with a rare form of motor neurone disease, who used a voice synthesiser to speak, changed attitudes towards disability with his off-the-wall humour, impish attitude and ‘real person’ celebrity status.

A thank you to BlueSky Community Trust for $2000 towards the costs of printing this magazine. As a non-profit grants and donations are always gratefully received!

Enjoy the splendour of autumn!

Sue Pairaudeau, Editor

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Hono, kōrerotia, tautoko • Connect, inform, support family and whānau of Kiwis living with disabilities.

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CONTENTS 2

Minister for Disability Issues

16

Goals pay off

4

The colourful world of Anahera

18

SibCamp

7

Kiwi Celebs Create for a Cause

19

Tactile books bring stories to life

8

Disability Rights Commissioner

20

Rare is everywhere

10

First real friend

22

Service for Indian farmers receives award

12

New way to reach families

24

Tribute

13

Support Parents

26

New faces

14

Waiting for Cook Strait

29

Disability friendly service directory

Achieving positive change

Celebrity Art Auction 2018

Towards inclusive education

Giving back

Elite athlete determined

Erica is flying

You can’t put a dollar value on it

Poster child for Rare Disease Day

Professor Stephen Hawking

Parent to Parent March 2018

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Opinion

Working to Achieve Positive Change

By Hon CARMEL SEPULONI Minister for Social Development, Minister for Disability Issues, Associate Minister for Pacific Peoples, Associate Minister for Arts, Culture and Heritage

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feel privileged to have been offered the Disability Issues portfolio, and to have the opportunity to contribute to this column. When approached to become a regular contributor I happily agreed, given Parent to Parent’s important focus on supporting families raising children with disabilities in New Zealand.

As a mother of two boys I understand what it is to want the best for our children and to do everything we can to help them reach their full potential. But I’m aware that unless you have a disability or are closely connected to someone who is disabled, it is possible to go through life without truly questioning how adequately the system caters for disabled New Zealanders and their families.

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Parent to Parent March 2018

One of the first things I have learned in my role as Minister is the need to listen, and learn.

I have met with scores of organisations and individuals since taking up the Disability Issues portfolio and am impressed by the achievement and resilience of disabled people and their whānau. I am heartened by the many committed people who are working in the system and who are willing to challenge their current approaches and practice to achieve better results for those they work for. However, I acknowledge there are barriers still facing many disabled New Zealanders and I hope through collaboration with other ministers and organisations we can all work together to achieve positive change.

While my role as Minister for Disability Issues is a relatively new one, it’s a good fit with my work prior to entering politics. As a Literacy Educator with youth in West Auckland, a teacher in Samoa, managing equity programmes at the University of Auckland, and acting as CEO of New Zealand’s only national Pacific health provider Vaka Tautua, I have tried

Minister Sepuloni visited Paralympics NZ to send best wishes prior to the 2018 Paralympic Winter Games held March 8-18 in PyeongChang, South Korea.

(L-R): Rhys Kimber (AUT student), Melissa Wilson (Para Sport HP Athlete Development Manager), Caroline White (Financial Controller), Fiona Allan (Chief Executive), Hon Carmel Sepuloni (Minister for Disability Issues), Lynette Grace (Games Campaign and Sports Manager), Rachel Froggatt (Commercial and Marketing Director), Ian Sargeant (Commercial Partnerships Manager), Melissa Dawson (Communications Manager).

Photo: SUPPLIED

to embed the principles of equality and inclusiveness across all platforms.

I have also been committed to improving social, health and educational outcomes for all New Zealanders with a particular focus on low socio-economic groups, disabled people, MÄ ori, Pacific, and sole parents.

In overseeing the Social Development and the Disability Issues portfolios, I will continue to work toward creating more equitable outcomes for all New Zealanders.

As a cabinet minister I am privileged to be serving under Prime Minister Jacinda Ardern who has talked about the type of government we are committed to being – a government that is compassionate and kind and is focused on maximising the potential of all New Zealanders. These are the principles that underpin my role as Minister for Social Development and Minister for Disability Issues.

There is important work under way this year that will create greater opportunities including the Ministry of Health-led transformation of the disability system. This system puts disabled people and their families at the centre and ensures greater choice and control over the services and supports available to them.

I was fortunate enough to be in the Waikato recently meeting the people and families who have benefited from the Enabling Good Lives programme – the programme informing national transformation of the system. I was shown the life-changing benefits afforded to people when

they are given the opportunity to make their own choices about what assistance they need, when they need it, and how it is delivered.

Last month Broadcasting, Communications and Digital Media Minister Clare Curran and I released a consultation document on the Telecommunications Relay Service. This is an opportunity for relay users and interested stakeholders to give their feedback on how the service is meeting their differing needs, and on how it might be improved in the future.* We are taking the New Zealand Disability Strategy through to the next stage, to confirm how we will measure progress for disabled people.

Next year New Zealand will be examined at the United Nations on its implementation of the United Nations Convention on the Rights of Persons with Disabilities. This is an opportunity to not just report on how we are going, but more importantly to plan for doing better.

I am excited by the opportunities within my role, including the work I will be doing with my colleague ministers to progress the rights and opportunities of disabled people. I look forward to sharing more news of the progress we are making in future columns. * A telecommunications relay service (TRS), IP-relay, or web-based relay service, is an operator service allowing people who are deaf, hearing impaired, deafblind, or have a speech impairment to place calls to standard telephone users via a keyboard or assistive device.

Parent to Parent March 2018

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People

Anahera colours her whanau world I

n their own words, mother Desiree Thompson and daughter Anahera, 14, talked to MONICA HOLT about life with autism spectrum disorder, their summer holiday, and Anahera’s hopes and ambitions.

Desiree Since Anahera was very young we knew she was extremely clever but had a lot of trouble with social skills and expressing her emotions. We learnt quite early that she just saw the world in a different way than most. She was diagnosed ASD around age 11.

We've never really seen ASD as a weakness or limit to Anahera's abilities, more just a way of being, and while it has not always been easy, if anything, Anahera has taught us so

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Parent to Parent March 2018

many lessons in life that have shaped us into new and better people, with more patience, resilience and understanding.

Anahera colours my world. She is her own person, beautiful inside and out. She has an awesome personality, a great sense of humour and she knows that she can do anything she sets her mind to and we will support her.

I am extremely lucky to have such amazing support from my mother and husband. My extended family has been a huge support and I couldn’t have done it without them all. Our job as parents is to love unconditionally and accept, understand and support our children; in whatever it is they aspire to do, wherever, whenever.

• Desiree is part of Parent to Parent’s Central Lakes network of parents who meet and attend workshops.

Rotorua’s Desiree Thompson took this photo of her daughter Anahera at Tolaga Bay. The photo was judged the winner in Parent to Parent’s summer photo competition.

Anahera Tena koutou katoa Ko Titirangi me Tiheia oku maunga Ko Tereanini me TeArawa oku waka Ko Te-Aitanga-A-Hauiti me Te Arawa oku iwi Ko Te Aitanga a Hauiti me Ngati Rangiwewehi oku hapu Ko Hauiti me Tarimano oku marae Ko Ruakapanga me Tawakeheimoa oku whare tipuna Ko Hauiti me Rangiwewehi nga tangata Ko Vernon raua ko Desiree Johnson aku mātua Ko Vee raua ko Viv aku tungane Ko Layla taku teina Ko Anahera toku ingoa.

My mum has been going to Tolaga Bay since she was a little girl to visit our Koro, Russell John Te Aotata Thompson. His

whānau have lived in Tolaga Bay for many generations.

My Kui* (grandmother) tells stories about when she was younger and would travel to Tolaga Bay with her siblings to see her grandparents, or about the little bach that is still being used at the end of my Koro’s driveway that my greatgreat-grandad built when he came back from World War I. Our family is lucky to have deep-rooted connections to Tolaga Bay and a place that will always be home. It is our own little piece of paradise.

I usually go a few times a year with my Kui and Mum. Sometimes it’s just for a weekend, but we mostly go during Christmas holidays.

This summer I spent around two weeks in Tolaga Bay before my Koro’s unveiling. I have a really big, close-knit family – so lots of aunties, uncles and cousins who all came down later to be together for the unveiling.

Parent to Parent March 2018

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People

Tolaga Bay is a small town just out of Gisborne. It’s a long drive from home. We usually stop for lunch at the beach in Opotiki or try to spot waterfalls when we go through the Waioeka Gorge. Tolaga doesn’t have many shops but the town is full of nice scenery. The people are friendly, everybody knows each other and one shop has the best candy floss ice cream! We got to have rides on my uncle’s boat this time. It was heaps of fun.

I like to spend time at the two beaches exploring and swimming or boogie boarding. The Tolaga Bay Historical Wharf is my favourite. The wharf is 660m long and is nice to walk down. It’s a really good spot for practising my photography, and it always has nice waves for boogie boarding. I like to go exploring, looking for shells, rocks, driftwood and sea creatures that have washed up. I found a lemon shark one day – that was really cool.

Blue Waters Beach is further along and has jellyfish and stingrays sometimes. That’s where the ‘winning’ photo was taken. My family and I were all out swimming when we spotted two jellyfish. I put my boogie board under one of the jellyfish and brought it out to show my mum. She was pretty scared of it, but I thought it was cute!

I like animals and would really like to see penguins someday. I'd also like to see the Titanic!

I really enjoy taking photos of different landscapes and patterns in nature and am learning photography and art.

I’m learning to play keyboard and love listening to and learning about music. I like to unicycle and would love to get a stunt one.

I am Year 10 at high school and have chosen art, music and photography as my options. One day I would like to be a daycare or kindergarten teacher.

I was excited to know we had won the photo competition and the $100 Prezzy® card. We will probably use it to go out for lunch and some shopping next time we go to Kmart.

Maybe some new headphones and art gear. Thanks Parent to Parent!

* Anahera calls her Kuia (grandmother) Kui

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Parent to Parent March 2018

Photos: ANAHERA THOMPSON

Jax Hamilton

Jack Tame

Cecilia Robinson

Chef, runner-up on MasterChef NZ, face of Countdown’s ‘Feed 4 for $15’ campaign

TVNZ Breakfast co-host, Newstalk ZB Saturday morning host, journalist

Businesswoman, entrepreneur, co-founder of My Food Bag

Kelvin Cruickshank

Jacinda Ardern

Suzanne Paul

Psychic medium, author, featured on TVNZ’s Sensing Murder

Prime Minister of New Zealand, leader of the Labour Party and MP for Mt Albert

Entrepreneur, TV host, actress, Dancing with the Stars champion, infomercial pioneer

Nándor Tánczos

Jason Kerrison

Rainbow Learning

Former MP, Whakatāne District Councillor, activist and political commentator

Musician/singer/composer, New Zealand’s Got Talent judge and former lead singer of OpShop

NZ’s most viewed YouTube channel (1.4bn views) featuring colourful videos for kids

Like us on Facebook to stay updated facebook.com/parent2parentnz

Parent to Parent’s Kiwi Celebs Create for a Cause is back for 2018 ... ... with a new line-up of well-known Kiwis turning blank canvases into fundraising masterpieces for this worthwhile cause.

WHAT WILL THEY CREATE?

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Opinion

Towards an inclusive education system

By PAULA TESORIERO MNZM Disability Rights Commissioner

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ith schools just started again for the year, I want to talk about education from my perspective as Disability Rights Commissioner.

Minister of Education Chris Hipkins recently announced a major education review, the biggest review since 1989.

Education is one of my top priorities as Disability Rights Commissioner, because receiving a quality education is critical to success later in life. However, currently some disabled children are not getting as good a quality education as they should.

Recent stats revealed that currently 42% of young disabled Kiwis aged 15-24 are not in education, employment or training, compared with 10% of non-disabled – an indication that our education system is not as inclusive as it needs to be. As I’m sure many of you know, the Education Act does not include an enforceable right to inclusive education, a number of families are not able to access enough support for their children at school, disabled students are overrepresented in stand-down and exclusion rates, and data on the achievements of disabled students is not generally collected.

I have read the many reviews conducted over the past 20 years and met with a range of stakeholders in the disability sector who have told me about a range of issues from the level of Ongoing Resourcing Scheme (ORS) funding, a need for more support for those who don’t qualify for

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Parent to Parent March 2018

ORS, culture and attitudes, and for more teacher training to name a few. I therefore consider there is a need to examine, at a systemic level, what is needed for our education system to be truly inclusive and work for everyone involved, including students, families and schools.

I plan to meet with more education sector groups to further understand the issues from their perspective. In addition to meeting with the Secretary for Education and the National Director of Learning Support, I have requested a meeting with Minister of Education Chris Hipkins and recently met with Associate Minister Tracey Martin.

I’m keen to contribute to the work the Government plans to do in this area and other initiatives like the national review of how disabled children are supported in schools the ERO (Education Review Office) is planning.

All children have a right to attend and have their educational needs met at their local school – this clearly includes disabled children. If this is not the case, parents, the child and the school should discuss the best options for the child and how their needs can be met.

If you are still having issues with your child’s schooling, speak to the principal in the first instance and then the Board of Trustees. If you aren’t satisfied with the response from the school, you can contact your local Ministry of Education office for support. Alternatively, you can make a complaint to the Office of the Ombudsman, or if you believe your child is being treated unfairly due to their disability, to the Human Rights Commission, which offers

a free, informal enquiries and complaints service. If your complaint is about a teacher, you can complain to the Education Council.

I’m also acutely aware that an important aspect of being at school is feeling safe, which includes being free from bullying. Sadly, many disabled children are bullied which is completely unacceptable. I have spoken out about the issue recently in the media to draw attention to this issue.

The fact that disabled children are bullied at such high rates is a reminder that we still have a long way to go to ensure they feel they are valued members of their classrooms, schools and wider communities. Attitudes towards disabled children in our schools need to change so that their

differences are celebrated rather than used as a tool for bullying and abuse by others. Shifting attitudes towards disabled people so that disability becomes ‘business as usual’ is another top priority of mine; more on this another time.

As parents of disabled children, I’d welcome hearing your experiences of the education system, so feel free to get in touch with me. I’ll keep you updated about my work in this area as I try to shift the dial in education for disabled New Zealanders.

• Follow Paula on Facebook www.facebook.com/ PaulaTesorieroHRC/ and Twitter @paulatesoriero

Parent to Parent March 2018

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People

Louis’ first real friendship

By CLARE CHAPMAN Freelance writer

outbursts when he doesn’t feel comfortable or he’s around a lot of other people.”

ouis Stowers is a creative, confident little boy – when he feels comfortable. Now six, he’s about to start school. If you didn’t know he’d been diagnosed with autism spectrum disorder, it’s possible you might not realise. He’s been described as moderate to high-functioning, and a child who could easily have slipped under the radar.

While Gemma made significant efforts to meet up with other kindy families, Louis didn’t sustain a friendship.

“At one point he seemed to get quite close to one boy, but then something happened and they refused to be around each other. He also struggles to play with his little brother who is five, but he is also on the spectrum.”

L

But thanks to his mum Gemma Stowers, who knew from the start that something was going on, Louis was diagnosed at two-and-a-half and has received additional support as a result. He is the third of four siblings, and as a baby was very unsettled and seemed overly tense for such a young child, Gemma says, which is what first alerted her to his eventual diagnosis.

Louis has been at a sensory kindy for the last couple of years, and while he has come a long way, one thing he’s always struggled with is socialising. Until recently he’d never really connected with other children.

“Louis has always struggled with very high anxiety,” Gemma says. “This has led to OCD-type behaviours and frequent

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Parent to Parent March 2018

So when Gemma moved her four children into a house in Auckland’s Mt Albert about a year or so ago, despite it being a family-friendly suburb, she had limited expectations that Louis would make friends locally.

“I’m quite shy and so are the kids, so for the first while we didn’t really have much to do with the neighbours. But when we realised we had children of a similar age, we started talking more and then the children started hanging out together because I had become friends with Deb,” Gemma says.

Deb’s little girl Miller, also six, is in year two at school this year. She’s a very girly-girl according to her mum, and has a confidence above her years. “She’s definitely sassy and knows how to get what she wants.”

G So it was an unlikely friendship that began between Louis and Miller, at first initiated by Deb and Gemma, but one that has since been cemented and is now driven by the children themselves, who have been close for about a year.

“It’s the first real friendship Louis’ had,” Gemma says. “We basically have an open-door policy with the children coming between the houses whenever they want to.”

And over the months, thanks to the unwavering support of their mothers, the children's’ friendship flourished, developing into a unique relationship that Gemma and Deb say is incredibly positive for both children.

“I think they really balance each other out in a way,” Deb says. “They are very different kids, but they just seem to innately understand each other.”

For Gemma, it’s been heartening to see the friendship develop.

“Nobody had ever been able to calm Louis down when he had an outburst before, apart from one teacher at kindy. But it became clear that Miller was able to do this and one day he went off next door and said to me ‘Don’t worry mum, Miller knows how to calm me down’,” Gemma says.

It’s a huge step forward for Louis, and a fulfilling friendship for Miller – Deb says his gentle nature is good for her.

“I think he’s really learning some valuable lessons about friendship and socialising within his relationship with Miller and I hope that he will be able to build on what he’s learning and make friends at school too,” Gemma says.

It’s a relationship that has fostered a unique confidence in both children and one that continues to create hope for Louis’ ongoing development.

emma Stowers first became aware of Parent to Parent’s services a few years ago and has always been engaged with the organisation on social media and keeping up to date with its happenings by reading blogs and newsletters.

But it was at a point when Gemma felt she was beginning to struggle raising four children alone, each with different needs, that she contacted Parent to Parent for the first time.

“I really had no idea what was out there, so I emailed through and got a phone call and was able to have a wonderful chat. What was really nice about it was it felt like I was talking to a friend, but they were there ready with all sorts of ideas about how I could help my children.

“I felt so comfortable, which made me feel like I was in a safe place without judgement.

“Also, at a time in our lives when it all became so full-on and focused on the two younger boys' diagnoses, and when it all became about learning and behaviour issues, my older kids got to go to SibCamp. I am truly grateful they got to go and have time for them and talk to others who understood.”

Parent to Parent March 2018

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New way to reach families of people with disabilities

P

arent to Parent’s podcast Connect, Inform, Support is a recent initiative for the organisation to reach families/whānau caring for people with disabilities.

Launched early March, it features interviews and discussions on disability-related topics with practical information for families/whānau members.

In March, the first two podcasts featured Parent to Parent’s history, development and future; information on its key services and how to access them.

“Parent to Parent’s core business is to connect, inform and support families/whānau nationwide caring for children and adults with any disability or health impairment,” says general manager Guy Ockenden.

•

Week three: Minister for Social Development and Disability Issues Carmel Sepuloni and Disability Rights Commissioner Paula Tesoriero discuss their roles and future direction.

“Our free services are designed to assist them to meet the challenges they face, and podcasts can be conveniently accessed at any time. This is a first for Parent to Parent.”

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Week four: Inclusive Education featuring the Ministry of Education’s National Director of Learning Support Dr David Wales, and Vision Education’s Justine Brock, a parent of children with autism.

The 30-minute slot airs weekly on Waikato’s Community Access radio station FreeFM (89.0FM), with re-broadcasts on 11 other Community Access stations. Podcasts will be available on iTunes and Parent to Parent’s website.

Made possible through an IHC Foundation grant, Parent to Parent has 12 months of programmes funded “although we have already identified at least two years’ of potential relevant content”.

Connect, Inform, Support is hosted by former radio presenter Val Ockenden who has volunteered for this role and is supported by and is supported by Parent to Parent staff Louise Ratcliffe (production), Carolyn Jury (coordinator) and Lisa Pirihi (researcher).

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• For the Connect, Inform, Support schedule and to listen to podcasts visit parent2parent.org.nz/podcast

Support Parents

Giving back with caring, chatting and craft

By MONICA HOLT Freelance wrtier

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ttending a weekly Parent to Parent craft group was a godsend for Tauranga’s Rhiannon Woest in the early days of her son’s diagnosis.

Son Kvan, who has Down syndrome and autism, was just three months old when a paediatrician referred the family to Parent to Parent.

She started attending a Thursday night craft group, a hobby which has turned into a business venture for the mum of two.

“We would bring our own projects to work on, and every now and then we would work on a special project together, and sometimes we would go away on weekends together.

We would just sit around and work on craft activities. It was really awesome.”

Before too long she was heavily involved in the organisation.

“I got really involved in Parent to Parent and all the events they were having and gradually ended up being the person organising them.”

One thing led to another, and she now owns a shop, WonderCraft, located in Tauranga’s Historic Village, just along from Parent to Parent’s Coastal Bay of Plenty office.

She sells crafts as well as running craft classes for adults, children and birthday parties.

A talented artist, Rhiannon lends herself to “every craft thing you can think of except knitting, because I can’t knit to save my life!”. She is doing a lot of jewellery making and dreamcatcher work at the moment.

Rhiannon Woest

SUZIE HAYNES

WonderCraft runs craft classes for children during the school holidays and every second Sunday afternoon, as well as adult classes during term time.

Projects for a recent St Patrick’s Day class included shamrock soaps, pretzel shamrocks, liquid luck potion bottle charms and leprechaun slime. Easter-themed classes include surprise egg soaps, Easter chocolate bark, lollipop bunnies and Easter baskets.

Now Kvan is eight, Rhiannon is all about giving back. She recently hosted an event when she invited people along to make crafts for the shop. Proceeds from the works help support Parent to Parent’s Coastal Bay of Plenty office.

Rhiannon, who also has a daughter Yuna, 10, has qualified to become a Parent to Parent Support Parent.

“I always think it is really good to speak to other parents who have been through that whole new diagnosis phase because nobody in the system really tells you what you can and can’t access, and it’s only from other parents that you actually learn that information.”

The training weekend was a lot of fun, she says.

Chatting to people who have ‘lived it’ was the most valuable thing Rhiannon has got out of meeting up with other parents of children with disabilities.

Wondercraft Tauranga: facebook.com/WonderCraftTauranga Any parent/caregiver of a child with any diagnosed disability can contact Parent to Parent and request to be matched to a trained Support Parent who has the same/ similar lived experience.

Parent to Parent March 2018

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Pure Determination

By CLARE CHAPMAN Freelance writer

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am Muir-James, 32, is a determined elite athlete. It is his success in various athletic pursuits that has challenged the notion of what’s possible for many others who have a diagnosis similar to his – autism spectrum disorder (ASD).

Sam’s unwavering determination has acted as a beacon of hope for people the world over. He’s completed feats many others would deem impossible, and his next – swimming the notoriously difficult Cook Strait – is scheduled for any time in the next few weeks when the weather will allow.

Despite his struggles through school, ongoing social anxiety and awkwardness, Sam has not let his diagnosis define him.

For him, success started young and has been a central part of his life ever since.

His mother Jayne Muir-James has always been a believer in having Sam involved in as many mainstream activities as possible, and was an advocate for him attending a mainstream school in a satellite class.

It was in his tween years that it became clear he had skills in sports and creative pursuits that were beyond his years.

“I’ve always done clowning part time in the weekends, but I never thought Sam was interested in it,” Jayne says.

“One day when he was 12, he picked up my juggling balls and

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Parent to Parent March 2018

it was like he’d been doing it for years. That developed into an interest in magic, and now he works with me part-time performing magic and juggling.”

Sam has always been relatively independent, and when he finished school at 21, he left home and joined the circus where he travelled around the country for a year performing. Since then, he’s worked with Jayne and created a name for himself in the industry, as well as working for his father on an ad hoc basis.

Despite an exceptional work ethic and desire to succeed at whatever he does, employment has been surpassed by his successes in sport. In his early 20s he represented New Zealand in kayaking, and over the last few years ocean swimming has become his new pursuit – something he’s fast ticking off achievements in.

Each morning he sets off to train, swimming around 10km at the pools, and over summer he’s involved in the Kohi Swim Series in Auckland. “Sam goes early, swims out to the buoy and back and then meets the rest of the swimmers and goes again,” Jayne says. “He’s a very fast swimmer but distance is his real ability.”

After announcing to his swim coach about five years ago that he wanted to swim Cook Strait, an unwavering determination has seen his skill develop immensely.

“Part of Sam’s make-up is an interest in time and distance and how long things take. It’s part, I think, of why he

People “It’s funny, because Sam is such a fast swimmer he’s often out in front in ocean swim races. And while his skill is there, because of the autism he doesn’t have great navigation, so often people follow him as he’s in the lead – we’ve had times where he’s led them 400 metres off the course.“

Like everything else in Sam’s life, this is something that has never deterred him and, in fact, has potentially made him more determined to succeed.

enjoys this endurance swimming so much. He is incredibly determined and will never stop unless he is told to, despite the conditions. He is a person that once he starts a task, he will simply not give up.”

“He just needs the right employer, but once he knows the job he will do it incredibly well. He’s the sort of person you have to remind to take breaks because he will forget, being so wrapped up in doing the job well.

Last year, Sam thought a good way to train for Cook Strait would be swimming the length of Lake Taupo – 40.2km. It took him 14 hours and 58 minutes, and on 26 February 2017 he emerged from the lake at 7pm after entering it at 4am, giving a crowd of onlookers the thumbs up as he reached the shore.

“What we’re wondering now is what his next sporting goal will be once he’s ticked off Cook Strait. Maybe he’ll get back into kayaking or set his sights on something else, who knows?”

Once he completes Cook Strait, Sam plans to look for a fulltime job – his determination is just as unwavering as it is in his athletic pursuits.

It remains to be seen, but what does seem clear, is that whatever Sam decides to do next, he will succeed.

“The first 26 kms went really well but then he got cramp, something Im so glad I talked to him about before he did this, because with Sam, you need to ask him the right questions or he won’t say anything,” Jayne says.

“So when his coach Jane Logan, who was on the boat alongside him, saw him starting to struggle, she was able to ask him if he was sore and if he had cramp and he said ‘yes’.

“She asked him various times if he wanted to stop and the answer was always ‘no’. So they upped his liquid supplements and he got over the cramp and completed the swim.

“It was very emotional for me to see him achieve this. He didn’t say much about it, but he was happy he had done it.

“When he swims Cook Strait in the next week or so, his coach Jane knows it will be her who will call the shots, because Sam simply won’t stop or give up.”

While Sam has never really connected with others socially, he has made himself a name in New Zealand ocean swimming circles and without ever saying much, his determination and positivity speak volumes.

“It’s funny, because Sam is such a fast swimmer he’s often out in front in ocean swim races. And while his skill is there, because of the autism he doesn’t have great navigation, so often people follow him as he’s in the lead – we’ve had times where he’s led them 400 metres off the course.

People know now and we’ve recently bought him a nav watch, and he’s getting straighter and straighter every race.”

While Sam waits for Cook Strait, on March 10 he won this third gold medal for the third consecutive year at Mt Maunganui’s Sand to Surf (non-wet suit category).

Photo: SUPPLIED

Parent to Parent March 2018

15

People

I am just flying Training for half-marathon has added benefits

By MONICA HOLT Freelance writer

G

rowing up, Erica Perry hated running. “I was always the last person at the back of cross country.” But years later, that has changed.

“I’ve actually grown to really love it, with the right help and the right shoes and the right attitude.”

Now Erica, 32, runs between three and five times a week, and is training for the Bayleys Mountain to Surf Half Marathon in New Plymouth in 2019.

Running does not come easily as she has Miller Syndrome, which means she has small feet and other physical differences. But not one to sit around, Erica set herself the ambitious goal. She has had a lot of encouragement since her story featured on the front page of the Taranaki Daily News in January.

It all started when Erica ticked off her long-held ambition to live independently, and was looking for a fresh challenge.

“Basically I try to have a goal in life every year that is a longterm goal. And when I have run out of goals I have to make new ones.

“Someone was asking me what my goal was for the longterm now that I have moved in to my own house. So I popped out with ‘maybe I could run a half marathon?’.”

Erica didn’t really know much about running. “But I have said it now, I have put it out on Facebook, so I really have to follow through with it!

“I am a little bit crazy, but if I am going to do it, I am either all in or all out.”

The running was also prompted by a low point in her life last year. “I got really sick and I put on lots of weight and I

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couldn’t really support my weight any more with my small feet.” She has tiny child’s size 12 feet with three toes.

“I just had to snap out of what I was in – I am usually a really positive person – and start from scratch with a personal trainer. I have lost 10 kilograms and am happier and healthier and my feet can support me.”

Like many runners, Erica says it’s good for her mentally.

“I love the fact that it just clears my mind.

“A lot of people say it would be a good time to think, but for me I think a lot and I worry a lot and I talk a lot and I always have things going on in my head, so when I am running I don’t actually have anything in my head. I’m purely focused on the running.”

When Erica spoke to Parent to Parent, she had just got her “butt into gear” and entered the Mountain to Surf on March 3 as part of a two-person team running 10.5km. Her training schedule involved running three to five times a week “depending on what the weather is doing and what I am doing, and if I am feeling like running by myself, or with someone”.

She sees a personal trainer to help stay focused, who will sometimes run with her to see how she is progressing, and she has a running buddy on Fridays.

Erica is upbeat when describing the renewed energy she has, “I am just flying”.

She does voluntary work twice a week. “I have a part-time job, mostly just volunteering, helping people look after their kids. I have come to the conclusion, both physically and mentally, having a full-time job is not going to work for

Inglewood woman Erica Perry is looking for a training buddy for Tuesdays and Thursdays to join her on her journey to run a half marathon next year.

Photo: ANDY JACKSON/STUFF

me because of my physical needs and mental needs and everything else.

“I love looking after kids, so I have the opportunity to do that two days per week, and another child after school just to give me something to do in an area I love.”

owned by the Barrett Homes Trust.

“I had been looking and looking for a couple of years. Mum came up with some ideas; she came up with the Barrett Homes Trust, so I Googled it, and then I misinterpreted what it said online, thinking it was only for short-term people who need a place to go when they have had an injury.

“But it turns out they were looking for more permanent people with disabilities to move into these flats.

A notice came through mum’s “I think a lot and I worry work and I rang them, and within a a lot and I talk a lot and I month I had moved in.

Erica was born with Miller Syndrome, a condition which causes craniofacial and limb abnormalities.

“It is a genetic syndrome, so both of my parents happen to have the gene; it is extremely always have things going rare and there are only 40 “It is a just a perfect two-bedroom on in my head, so when I am documented cases in the world. little unit that has been designed “As far as I know, at the for people with disabilities. It is for running ... I’m purely focused moment, there are only two people who can’t afford too much on the running.” people in New Zealand – that is rent.” me and my brother (Sherman).

Erica drives, and is 15 minutes So for me it is only purely a away from her parents Carla and physical disability; it only affects Maurice’s Bell Block home. the way I look on the outside. I have had a few operations on She says she is a really social person who likes to meet my insides, but it hasn’t affected my brain I don’t think.” people for coffee, go out for dinner, as well as “everyday Just over a year ago, Erica achieved another long-term goal, things” like reading, watching movies, and shopping. living independently. She moved into a flat in Inglewood

Parent to Parent March 2018

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Photo: LLOYD GUTTERIDGE

“

Auckland, February 2018 SibCamp feedback from parents

Kaitlyn had a wonderful time. On our drive back …

I heard many stories about what she did. The best news was she had made a new friend who happens to live out by us and they swapped numbers to keep in contact.

Thank you so much for the opportunity for Kaitlyn to have a break away from her busy household and be surrounded by understanding and caring individuals.

She would love to go again next year.

Macy and Shania are exhausted but really happy … we are so grateful. It was great for them to have something that was about them, and wasn’t reliant on how their brother may be feeling or behaving at the time.

They also gained a lot in terms of new friendships, confidence, and a new understanding that other kids are going through hard times with their siblings and that they’re not the only ones in the situation. My husband and I have talked with them about what they learnt in SibShop and how we can work with them to try these things to help them moving forward.

Please thank sponsors/funders of the event also, as you just can’t put a dollar value on what this has given our children.

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Parent to Parent March 2018

Finn had a really awesome time. It’s great for the focus to be on the siblings and their needs, all in a supportive atmosphere that is lots of fun. Thanks for providing this – it is a very special and important opportunity for our kids.

Finn said: “I liked the activities and being able to talk about having a sibling with a disability. I also liked bonding with other kids who have been through the same thing as me.”

My two had a great time at the SibCamp. Feedback from both of them (aged nine and 15) was that it was even better than last year. It was fun and even ’though it was challenging, everyone was supportive and they felt they made friends they would stay in contact with. It was good to talk about stuff relating to their brother and feel OK about it as everyone gets it.

Thank you so much. Luca is keen to be a leader one day.

Apart from the fun activities, Benjamin was very glad to meet other children with siblings with disabilities who have similar feelings to him and to share ideas to include their brothers and sisters in their daily life. He’s planning a couple of games for his brother based on what other kids told him were good things to play!

”

Books

Nelson Blind Foundation members Gill Clayton and Kaye Halkett share Whirly the Helicopter with Motueka South School junior students.

PHOTO: SUPPLIED

Bringing stories to life S

t Vincent de Paul (Vinnies) youth groups have been bringing stories to life through CD and tactile Braille books for the Nelson Blind Foundation.

The work began in 2013 when a Vinnies group of Year 7 and 8 students at St Joseph’s School Nelson recorded Chicken Soup for the Soul-type stories on CD. The CD, designed to be played on the Daisy Playback Device used for talking books by Blind Foundation members, was distributed in the local community.

Then in 2014, as part of a study into disabilities and after being inspired by the tactile books Foundation members borrowed from the National Blind Foundation Library, the students researched tactile books – not only for children, but also parents with impaired sight who want to read to their children.

The first story chosen was Whirly the Helicopter by Ian Pillinger. With Braille provided by The Royal New Zealand Blind Foundation national office, the Vinnies had fun assembling pictures including helicopter blades that could spin, and a mechanism to slide the helicopter up and down.

Nelson Blind Foundation rehabilitation instructor Paul

Richardson remarked that the book was “one of the best tactile books” he had seen in his years of working in this field.

In 2015, and spurred on by this success, the next tactile book based on the book Where Are My Socks? by Miriam MacDonald was taken up by Vinnies students at St Peter Chanel School, Motueka.

The book included drawers cut from lino that could open with different textures inside each drawer.

By 2016 both Whirly the Helicopter and Where Are My Socks? had been read by many local Foundation members, and featured in an art exhibition which ran alongside the Nelson Arts Festival. The Refinery ArtSpace special exhibition was for visually impaired people as well as fully-sighted people wishing to gain insight.

At the end of 2016 St Joseph Vinnies had also created a jungle counting book for the Foundation, and last year St Peter Chanel Vinnies created a tactile maths book for Motueka South School’s junior classes.

What started out as a simple Vinnies project in 2013 has opened up a world of opportunities and learning for Nelson’s young Vinnies.

Parent to Parent March 2018

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Perseverance Makes Parents Proud S .

even-year-old Gabrielle Stephens from Nelson was diagnosed with an extremely rare genetic disorder called dyskeratosis congenital (DC) at age four.

Her parents had noticed she bruised easily, took a long time to recover from illness and her skin was yellowish.

After initially suspecting leukemia, weeks of blood and bone marrow testing led to a diagnosis of DC. The disease can affect virtually any organ in the body, but primarily organs that need continual regeneration to survive.

Gabrielle’s telomeres (the protective caps on the ends of chromosomes) are shortening at a rapid rate, causing her cells to deteriorate faster than other children.

Less than a year after diagnosis, Gabrielle received a bone marrow transplant at Starship from her big brother Lachlan, who was just seven at the time. The family spent two months in isolation in Auckland before they were able to return home to Nelson.

Gabrielle goes to school and works really hard to keep up with her peers but gets frustrated as her body tires easily.

She loves playing summer soccer and has recently learned to ride a two-wheel bike.

“Almost every day [she] amazes us with what she can do.

Watching her participate in the school cross country and athletic sports day with a huge smile on her face was a very proud moment for us. Seeing her get certificates at school for perseverance and achievement, knowing how hard she has to work to get there, makes our hearts burst with pride.”

Gabrielle shared her story for Rare Disease Day hosted by the charity New Zealand Organisation for Rare Disorders (NZORD) on February 28.

There are over 7000 rare disorders that collectively affect around 8% of all New Zealanders – more than diabetes.

“Many people don’t realise that while each condition might be uncommon, collectively there are more than 377,000 Kiwis affected by a rare disorder,” said New Zealand Organisation for Rare Disorders chief executive Dr Collette Bromhead.

Rare Disease Day takes place on the last day of February around the world and is an annual celebration and fundraiser for people with rare conditions and their families/whānau.

Read more about Gabrielle’s story at rarediseaseday.org.nz and for more information and support for patients and their families living with a rare disorder visit nzord.org.nz

“Gabby just gets on with things and doesn’t let her disease stop her from doing anything she sets her mind to,” says mum Megan.

POSTER CHILD: Gabrielle Stephens shared her story for Rare Disease Day at the end of February.

Photo: SUPPLIED

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Parent to Parent March 2018

People

Rareeverywhere is ...

•

There are more than 7,000 different types of rare disorders, with more discovered every day

•

If evenly spread, 1 in 12 households would include someone with a rare disorder

•

80% of rare diseases are genetic in origin and thus are present throughout a person’s life even if the symptoms do not immediately appear

•

Approximately 50% of the people affected by rare diseases are children, 30% of whom will not live to see their fifth birthday

•

Rare disease patients are often orphans of the health system, sometimes without a diagnosis, effective treatment or research

Parent to Parent March 2018

21

Global

Service for Indian farmers receives award

By KAREN JACK Programmes Officer cbm New Zealand

W

e at cbm have the privilege of working with some amazing people and organisations dedicated to transforming the lives of people living with both poverty and disability.

We are proud to announce that PGSS – the social service arm of the Catholic Diocese of Gorakphur in Uttar Pradesh, India, which implements cbm New Zealand Organic Farming programme in India – has won an award.

with cbm to run programmes that ensure inclusion of children and adults with disabilities in society. They have now reached over 1074 villages serving more than 65,000 families in need. The collaboration has led to revolutionary changes in the lives of these families.

The service raises awareness about disability and importance of inclusion within community activities through various methods and techniques.

Work alongside schools and hospitals promotes equal access – something we take for granted in New Zealand.

Men and women with disabilities are encouraged to participate in activities and take up positions of leadership.

Self-confidence and leadership skills are fostered by creating organisations of persons with disabilities and self-help groups for savings schemes.

PGSS received the State level award for creating a barrierfree environment for persons with disabilities. During the ceremony PGSS received recognition for enabling farmers with physical, visual, hearing They have now reached and intellectual impairments to earn an income from organic over 1074 villages serving farming – unprecedented in more than 65,000 families in Uttar Pradesh.

Within these groups members are made aware of their rights and entitlements. In fact, the president of one organisation need. The collaboration has also received an award for being The service created a variety a role model for others. Mr led to revolutionary changes of training materials in Dharmender, 33, who is blind, in the lives of these families. audio-visual formats, sign led organisation members to language and Braille, and built approach local government accessible training facilities and departments for their muchdemonstration sites for handsneeded disability pension to on practise and easy access for people with disabilities to be reinstated. Using a loan through the organic farming learn alongside fellow farmers. It also built a small food programme, Mr Dharmender opened a small store to sell processing factory with ramps, rails, Braille signboards and his vegetables. He hopes that in time the income will grow platforms to enable full access for persons both with and to help support his elderly parents and sisters, and inspire without disabilities. other farmers with disabilities to lift themselves out of poverty.

PGSS started in 1986 to empower the most marginalised and excluded sectors of Indian society. Initially working in remote areas of impoverished Uttar Pradesh to address issues of maternal and child health, PGSS collaborated

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Parent to Parent March 2018

This award is the latest of many awarded to PGSS, and cbm New Zealand is proud to work with a team motivated by the overwhelming desire for a just and thriving community.

PGSS president and farmer Mr Dharmender who is also blind (second right) received a State Award for helping to enable other Indian farmers with disabilities.

Photo: SUPPLIED ADVERTISEMENT

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23

Tribute

Erasing Stephen Hawking's disability erases an important part of who he was Stephen Hawking talks about his life and work during a public symposium to celebrate his 75th birthday in Cambridge in 2017.

Photo: JOE GIDDENS / TNS

People with disabilities and advocates for disability rights have been particularly chagrined by one image making the rounds on social media: an upright man silhouetted n the days since Stephen Hawking's death, against a backdrop of stars, with an empty wheelchair in obituaries have described him as being "confined" the foreground. It has been frequently accompanied by or "chained" to a wheelchair, as someone who references to Hawking "finally being able to walk among the "overcame" his disability and succeeded in spite of it. stars" or being "free" of his wheelchair.

The image makes it seem "like every disabled person dreams None of those things are true. Stephen Hawking had a of shedding their disability," said Virginia Knowlton Marcus, disability, and Stephen Hawking used a wheelchair. His work the director of legal advocacy for Disability Rights California. was possible because of those things, not in spite of them.

"I think that able-bodied people often see the technology In fact, Hawking — a tireless disabled people use as advocate for disability rights when a burden," she said. "His he wasn't busy unlocking the wheelchair was his tool. He “It is unfair that in order secrets of the universe — viewed wheeled all over Cambridge. It those things as a positive. wasn't a burden." for us to celebrate his life, we "My disabilities have not been a feel it necessary to remove a Andrew Gurza, a disability significant handicap in my field, rights awareness consultant part of who Stephen Hawking which is theoretical physics," he and freelance writer in wrote in Science Digest in 1984. was: a disabled man.”

Toronto, said he was disturbed "Indeed, they have helped me to see Hawking's disability — a - Andrew Gurza in a way by shielding me from major part of his life and who lecturing and administrative work he was — functionally erased that I would otherwise have been in the drawing. involved in."

By JESSICA ROY Los Angeles Times

I

From the time he was 20 until his death [March 14] at the age of 76, Hawking suffered from amyotrophic lateral sclerosis. More commonly known as Lou Gehrig's disease, it is a progressive neurological disorder that prevents the brain from controlling the voluntary muscles throughout the body.

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Parent to Parent March 2018

In a piece for Men's Health, Gurza, who hosts a podcast about sex and disability called Disability After Dark, explained why he was bothered by the image.

"As a fellow wheelchair user, these kinds of depictions, while perhaps well-intentioned, sting," he wrote. "I wouldn't want someone to erase my identity as a disabled person in my

“In the foreword to a 2011 World Health Organization report on the global state of disability rights, Hawking wrote about a shared moral duty to remove barriers to participation for disabled people. He addressed the United Nations in support of a treaty called the Convention on the Rights of Persons with Disabilities. (It was adopted by the U.N. in 2006, but fell six votes short of being ratified by the US Senate in 2012.)

"He knew that he was a symbol, not only for the pursuit of knowledge about science but for people with disabilities," said Alison Dundes Renteln, a political science professor at USC who helped with the drafting and implementation of the treaty. She said Hawking wanted everyone to know that people with disabilities could live full lives, just like he had, if they had the right tools and support.

Stephen Hawking tribute gone viral on social media.

death, as it is a huge intrinsic part of who I am and how I see the world around me. It is unfair that in order for us to celebrate his life, we feel it necessary to remove a part of who Stephen Hawking was: a disabled man."

In an interview with The Times, Gurza said using a wheelchair gives you a unique perspective on the world, and that it's possible Hawking wouldn't have come up with the theories he did if he hadn't had a disability.

"His disability probably lent itself to him becoming such a great mind, probably more than most people," Gurza said. "Maybe [Hawking] wouldn't have written this book, maybe he wouldn't have thought about all these things if he weren't disabled."

Showing Hawking leaving his wheelchair behind implies that being in a wheelchair is something to escape. But Hawking's wheelchair didn't confine him. With a sophisticated onboard computer, it enabled him to work, to travel, to write and to lecture.

Gretchen Schreiber is a professional reader for a production company in Los Angeles, and she has a disability (though not one that limits her mobility). She wrote on Facebook about the troubling implications of sentiments like Hawking being "free of his chair," describing them as "passive ableism."

"Wheelchairs are modes of transport and allow people to be part of the community and part of the world, and essentially be free," Schreiber told The Times. "So to turn it on its head as if it were some sort of prison, confinement — when it's actually the opposite — is really sad and a misunderstanding of what the disabled community can do and add to the world."

"Disability is about the failure of the environment to be adapted to people with disabilities," Renteln said: If a person who uses a wheelchair can't access a scientific laboratory or a library because there aren't ramps or the aisles aren't wide enough, that's the fault of the lab or library, not the wheelchair user.

Hawking spent his last months speaking out against potential cuts to Britain's National Health Service and working on a lawsuit against Health Secretary Jeremy Hunt.

"Everybody assumes that a disability is a negative or somehow undesirable," said Knowlton Marcus of Disability Rights California. "Disability is part of the normal, natural human diversity, and if we all could just accept that simple fact, it would be a giant step toward paving the way to more inclusion of people with disabilities. We live in an ableist society that really marginalizes so much human potential."

A few years ago, Intel gave Stephen Hawking a fully upgraded communication system. He turned down one change: the option to have a less robotic-sounding voice.

Hawking said the synthesized voice he'd used since the 1980s was his voice, and he saw no reason to change it.”

Parent to Parent March 2018

25

New Faces Guy Ockenden – General Manager Guy has been National Operations Manager for the past 20 months, creating opportunities for Parent to Parent’s team of regional coordinators.

“Providing them with the outcomes they need to deliver the best service for families has been rewarding and motivating.”

Raised in Hawke’s Bay (Waipukurau), Guy embarked on a teaching career after completing his Bachelor’s degree in Economics (Otago) and Teacher Training (Canterbury).

After teaching in Greymouth for three years, a change of direction saw Guy and wife Val (originally from the Waikato) back in Christchurch where he worked as a professional actor

and director, including as Artistic Director for the Polynesian Performing Arts Trust.

Five years later he returned to teaching at Rangi Ruru Girls’ School and undertook a Master of Business Administration which was conferred with distinction.

A move to Wellington saw him in the role of national director for the Young Enterprise Scheme, later also coordinating the Enterprise Studies Programme before moving to the Duke of Edinburgh’s Award as executive director. He then spent 11 years as CEO for NZ Riding for the Disabled.

Guy and Val left Wellington after 17 years and moved to the Waikato to be closer to family.

Janine Morrah – Manawatu Regional Coordinator Parent to Parent’s new Manawatu coordinator is a Palmy local with strong connections to the community, mainly through sports and teaching.

Janine has taught both domestic and International students primarily at tertiary level for more than 20 years at Massey University, Ucol and the private tertiary institute IPU. Her qualifications include a BA in Linguistics with minors in Human Development, Anthropology and Management, and a Post Grad Diploma in Second Language Teaching.

This is her first foray into the disability sector at the coordinator level, although she spent quite a few years working part-time as a caregiver in New Zealand and the UK, and was a writer/reader at Massey to get herself through university.

“There’s a lot for me to learn, and I certainly do appreciate the welcoming messages and support I have received so far. I look forward to meeting and working with you all sometime in the near future.”

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

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Parent to Parent March 2018

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Care Matters runs nationwide workshops/learning opportunities tailored to the needs of your community, to enable carers access to knowledge, support and advocacy. It also provides a wealth of resources on its website. An 0800 number connects callers to its courses and directs carers to potential respite care..

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ON O R PA DE G R E 28

Our new tote bag

Our newly designed tote bag calls us to look beyond disability to see what our loved ones are truly capable of. The mandala design is both beautiful and complex, and the viewer must look closely to understand this important message. The perfect accessory for yourself or as a gift, the Parent to Parent tote bag is a powerful way to carry acceptance, love and understanding with you through the day.

Fill in an order form on page 28

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