March 2017
Rocky Horror star donates art Cosplay transformation Special Olympics Global Messenger All Birds Have Anxiety
Kia ora readers, families/whanau, and welcome to our first 2017 magazine. But what happened to February? Did we skip it this year? Check out our exciting fundraiser on the opposite page, feature stories to fascinate and inspire, and win the book All Birds Have Anxiety on page 21. We also welcome our new communications advisor Steven Mahoney (see page 22) and thank former advisor Clare Chapman for staying on as our staff writer. This issue is the last in its current form. From June our magazine will have its own, new identity – a name, and come to you in a slightly smaller but more manageable, compact shape. The publication has come a long way from what was referred to as the Parent to Parent “newsletter” until 2016, and is on track to become the country’s leading disability magazine.
In this issue
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Her face is her canvas
6 12
Families retreat to majestic Mt Potts
The gendered role of caregiving
We welcome your support and feedback. Sue Pairaudeau Editor
Donate to Parent to Parent Givealittle givealittle.co.nz/org/parent2parentnz GoFundraise gofundraise.co.nz/beneficiary parenttoparentnz
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0508 236 236 national@parent2parent.org.nz
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Goals of a Special Olympics Global Messenger
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Autism enables abstract artist
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Win a copy of All Birds Have Anxiety
parenttoparent.org.nz @parent2parentnz @parent2parentNZ snapchat.com/add/p2p_nz instagram.com/parenttoparentnz Editor: Sue Pairaudeau Graphic design: Te Reo Hughes Cover image: Dorothy van den Hoven 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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Famous Kiwis donate generously to art fundraiser
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nternational celebrity, star of stage and screen and writer of The Rocky Horror Show Richard O’Brien was the first well known Kiwi to donate an original art work to Parent to Parent’s art auction fundraiser in May. In fact Richard, known for his generous support of children’s causes, donated not one but three original art works, gratefully received by Parent to Parent Coastal Bay of Plenty regional coordinator Suzie Haynes. “These doodles – for doodles they are – were drawn just for the fun of doing so,” O’Brien said. “My only hope is that others find them appealing and, with this fundraiser in particular, I feel an urgent need to hear that someone has paid far too much for them. “You must remember that I am 75, and a doodler’s work (after they have shuffled off to doodler’s heaven) does tend to increase in value.”
International celebrity Richard O’Brien presents his artworks to Suzie Haynes, Coastal Bay of Plenty regional coordinator for Parent to Parent NZ. Photo: Dorothy van den Hoven
Parent to Parent is promoting his works internationally and hopes they will be snapped up by Rocky Horror collectors. The auction is an annual fundraiser to continue Parent to Parent’s unique core nationwide services. The charity is funded by grants and donations, with its services costing approximately $1.9 million annually to run. Other famous Kiwis tackling a canvas include transatlantic rower and author Rob Hamill, Olympic gold cyclist Eddie Dawkins, children’s entertainers Suzy Cato, Anna van Riel, Kath Bee and Itty Bitty Beats, former Black Caps Chris Martin and Dion Nash, Bernice Mene, Tamati Coffey, Aaron Fleming, Greg O'Connor, with more confirming every week. Celebrity Art Auction, May 21-31, Trade Me.
Jenny Payne, left, and Lucy Hiku are the award-winning Christchurch children’s music duo Itty Bitty Beats. Their artwork for the auction is called 'A Kiwi in Kaitaia cruising in his Combi' from the Kiwi Convoy song off their On The Move album. Photo: Aimee Cane Photography
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Feature
Her face is h By CLARE CHAPMAN
B
ayjour Wilson is 12 and three-quarter years old. She’s quite specific about her age, as she is about various other aspects of her life. The most important of these at the moment is self-taught makeup artistry – it’s something she’s incredibly good at. When Bayjour was three weeks old her mother Leighann Wilson noticed something wasn’t quite right. “She never did anything ‘normal’, but it wasn’t until she was five that she was diagnosed with ASD, ADHD and an auditory processing disorder,” Leighann says. “Bayjour always had a hypersensitivity to noise and sound, and when I started nailing the windows shut with rubber I really knew something wasn’t right.” Despite the struggles trying to understand what was going on and making things comfortable for her young daughter, Leighann
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has worked hard to develop Bayjour’s creative side. Leighann herself has a creative bent and has always worked on art and crafts projects with Bayjour and her younger sister, aged nine. “We started off painting when Bayjour was really little and things developed from there. It was something she concentrated on and got involved with. We moved on to cartooning and other art projects. It’s something we’ve always enjoyed doing together.”
her canvas Bayjour transforms herself in cosplay
But it was when Bayjour discovered makeup that her talents were uncovered. Leighann says Bayjour used to watch her putting on her makeup in the mornings, and admits it’s something she wears a lot of. “She started copying me and it became obvious how interested she was in the creative outlet of applying makeup.” When she realised Bayjour’s fascination with makeup and creating fictional and fantasy characters with her face, they started costume play, eventually attending the Armageddon Expo in Auckland dressed as sci-fi characters. “It’s progressed from there. Now, Bayjour uses her face as a canvas. She likes that she can transform herself into anything she wants to, from a princess to a zombie.” About to turn 13, Bayjour has honed her art to a skill many adult makeup artists would aspire to. It’s something she practises every day, except when she’s at school and isn’t allowed to wear makeup.
For Bayjour’s parents, it’s an art form they will encourage her to develop and use in later life. At the moment, Leighann says things are a bit tough for Bayjour struggling at school with bullying; she takes one day off a week because the interactions become too much for her to deal with. “I don’t know if she will ever live independently, but for us it’s about her enjoying her life. She loves her makeup artistry and so we will help her to pave the way to be able to get all the credentials to use it later in life. That was something we were told from the start – find that special thing and focus on it.” While Bayjour is fixated on makeup and says she’d love to be a makeup artist one day, like many her age, the boundaries are not quite set for just one career. She’d also like to have her own YouTube channel about makeup, be a makeup artist on film sets, a model, an actress, or a nurse. – Clare Chapman is a freelance writer.
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Great outdoors
My story
Families wind down
in the wilderness
Caleb watching the ducks in the pond. This picture captures the tranquillity of the lodge and the surrounding area. Photos: Laura Hall
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estled in Canterbury's remote high country landscapes close to the rugged Potts Range, is Mt Potts Lodge. Here, amidst the harsh and hauntingly beautiful Southern Alps, away from the reality of daily life, 15 families gathered together in the wilderness for some muchneeded respite.
Aidan having a piggy back from big sister Mikyala.
Organised by Parent to Parent Greater Canterbury's Laura Lightfoot, the inaugural Family Camp weekend was held in early February. “It was a chance for families to get away and relax and enjoy the company of other families in similar situations,” Laura says. “A lot of the mums were quite anxious leading up to the weekend that their child or children with behavioural difficulties would struggle, but it worked well because there was no pressure for them to conform.
Jorja finally got her turn to open the parcel.
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“In a situation like this, children can often struggle, but the weekend was such a success because everyone was relaxed and the children all responded to that.
They were free to be as they wished.” The weekend was possible as a result of the generosity of the Mt Potts Lodge staff, who donated their venue to Parent to Parent for the weekend. Families were charged a nominal amount to camp, and the event resulted in $900 being raised to put towards future family events. It was a fun-filled weekend of activities and relaxation. A treasure hunt, scavenger hunt, lawn games, pass the parcel and face painting, were highlights for the children, while a relaxed group barbecue and meals were a highlight for parents. “A lot of the siblings who came already knew each other from sibling days, so they instantly got on and played together too. The Mt Potts staff also organised two music therapists to come out to the venue and do some sessions with the children,” Laura says. “I think it worked so well because the station is remote. It's a 90km round trip to the nearest village, so we all felt quite far removed from everything and I think that made a huge difference.”
Never too old for pass the parcel
(L-R, Ryan, Harrison, Joseph and
Connor).
Keira opening a layer watched by sisters Emily and Poppy.
The children and adults all loved the pool table, it brought everyone together. Poppy and Caleb are watching Caleb’s dad have a go.
Caleb and Aidan enjoying a piggy back after watching the deer being fed.
Caleb walking with dad to watch the deer being fed.
In 1964 the original Mt Potts homestead, shearers’ quarters and woolshed were converted into an accommodation, events and function centre. Today, Mt Potts Lodge is Canterbury’s most remote lodge-style accommodation on a working high country station, nestled in the heart of the Southern Alps. The lodge is sited in the world famous Ashburton Lakes District, only 20 minutes’ drive to Lake Clearwater – an outdoor recreational playground offering fishing, kayaking, ice skating, 4W driving, horse riding, tramping, climbing, photography, birdwatching and more. Also on the station is the wild, rocky terrain of Mt Sunday. The roche moutoné of Mt Sunday (a low rounded hill shaped by a glacier) was made world-famous in Peter Jackson’s Lord of the Rings trilogy as the site of Edoras – the fortress city of the people of Rohan. For more information visit mtpotts.co.nz 7
News
IHC decreases services
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fter assessing the best way to support people with intellectual disabilities in the future, IHC’s senior managers and board have decided that IDEA Services will exit from providing: • • • • • •
Facility based respite Foster care Shared care Home support Holiday and after school programmes Contract board.
“The disability support sector is under immense pressure. We are all working hard to try to do more with limited funding, families and individuals are seeking to take greater responsibility in directing and managing their own services, and the many providers are all dealing with increasingly complex people,” said IHC NZ chief executive Ralph Jones. In addition, earlier this month Associate Health and Disability Issues Minister Nicky Wagner
announced a three-month project aimed at transforming the disability support system. She suggested “a significant culture change in all parts of the disability support system” was needed. “We have decided to withdraw from some of our smaller services to focus instead on our core business activities, being residential and day services,” Mr Jones said. “Our charity
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New Zealand is at the core of who we are,” he said. “We will work with other providers (with whom we have excellent relationships), individuals and families to ensure a smooth transition and continuation of support.” This decision will also affect some more than 5500 staff. IHC expects to offer most people affected other work within the organisation, and recognises
We have decided to withdraw from some of our smaller services to focus instead on our core business activities...
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funded community programmes will continue to find the best ways to further support the wider population of people with intellectual disabilities.”
that some staff with longstanding relationships with people they support may choose to continue working with individuals through another provider.
The six services IHC is relinquishing make up only 5 per cent of its business. However, these changes will affect many families and individuals. “Advocating for people with intellectual disabilities throughout
Families, individuals and staff are encouraged to approach area managers for more information and to provide feedback. An 0800 723 154 number specifically set up for these changes will be open 8am-7pm until April 3, 2017.
‘Syndrome without a name’ support group grows
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WAN New Zealand is a support group for patients and families affected by an undiagnosed genetic condition – a ‘syndrome without a name’. Established by the New Zealand Organisation for Rare Disorders (NZORD), SWAN has been running for eight months, has 18 members, and is calling for more to join. It celebrated Undiagnosed Children’s Awareness Day on March 18. “Other countries celebrate this day in April, but it was very close to Anzac Day, which meant organising events a little tricky,” said NZORD fundraising and communications manager Lyndal Bremer. “As SWAN NZ is new, we have aligned ourselves with 8
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SWAN Australia and celebrated on March 18 too.” Two Auckland SWAN mums organised a picnic at a café on One Tree Hill. “Being a new group, it was a small gathering but a fantastic opportunity for some of our families to meet for the first time,” she said. “It is hoped that next year there will be gatherings in other parts of the country too. “We would love more patient stories and photos to add to the website – sharing your story can be a huge help to other people out there struggling without a diagnosis.” For more information or to join visit www. swannz.org.nz, and check out its Facebook page / SWANNZ/ or Twitter account @swannz_nz.
Exploring the joy of music By DANIELA PAVEZ Arts Access Aotearoa
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or musician Andreas Lepper, it’s all about inclusion, connection and joy. He’s convinced that music is not only a path to self-expression and creativity but also a way to bring diverse people together. Originally from Germany, Andreas came to New Zealand in 1982 not knowing that he would become a well-known musician and mentor in Wellington’s local music scene. His passion for music inspires him to share his knowledge and guide others, especially people who experience mental illness or people with a learning disability or physical disability.
Wellington’s Andreas Lepper is passionate about sharing music with others, especially people with mental illness, learning or physical disabilities. Photos: Birgit Krippner
“My pupils are a constant source of joy,” he says. “They are always enthusiastic, full of ideas and really happy to be part of the session. That means a lot to me as their teacher.
Every Friday morning, Andreas and members of The Glorious Ssendam Rawkustra band have their weekly practise in St Christopher’s Church in the Wellington suburb of Seatoun.
“Apart from the fun of playing drums, you can really see the non-verbal communication within the group. Teachers, participants and family are all involved in this musical experience. It’s just fascinating.”
Ssendam Rawkustra was started by Andreas and health care nurse Kieran Monaghan, using music to support and empower people with lived experience of mental illness. The group has been playing together since 2007 and has recorded a CD. “It is just an amazing group. I have a great time with them. They make me very happy,” Andreas says. His love of music inspired him to lead workshops with young offenders in prisons in the 1990s. He believes music can make positive change in prisoners by improving their confidence, teaching them team work and developing their trust.
St Christophers Church.
“I saw positive changes in the group after we completed the programme,” he recalls. “They were much more open and
happy with their new skills.” Andreas started his music journey playing trumpet at school. Since then, he has been learning and gaining expertise driven by his own passion and curiosity. “I am a mainly self-taught man,” he says. He plays with bands in Wellington, including Sulco d’ Alma, Balkany and Duo Siboney. His collection of percussion instruments from all around the world is on display at St Christopher’s Church, where he runs regular classes on Thursday afternoons and Friday mornings. The old church became the centre of attention after Sir Peter Jackson and Fran Walsh bought it to save it from possible demolition. Now, many community groups in Seatoun and other Wellington suburbs enjoy their generosity. “It was very great news for the community and everyone involved in activities here. We are all very grateful,” Andreas says. – Arts Access Aotearoa www.artsaccess.org.nz 9
News
Next steps for Disability Strategy
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he New Zealand Disability Strategy is developing, with work under way to progress achieving the aims of the Strategy. The Office for Disability Issues is planning a public consultation on a draft Outcomes Framework, which is expected to be held in mid-2017. The Framework will specify targets and indicators from the Strategy that are measurable and will be
regularly reported on to determine its overall success. The development of the Outcomes Framework is a new concept internationally, and one that the Office for Disability Issues says it is determined to get right with advice from disabled people, the disability sector and other government agencies. More information is available at odd.govt.nz
First person with learning disability starts on UN Committee
K
iwi Robert Martin was the first person with a learning disability to be elected to the UN’s Committee on the Rights of Persons with Disabilities (CRPD) last year.
During his four-year term starting this year, Mr Martin says he wants
to focus on ensuring people with disabilities are recognised as true citizens of their countries. Mr Martin grew up in various state institutions at a time when he says many disabled people were segregated from society, he told Newshub.
“Many of us did not experience having a family or an education, so right from the start we were on the back foot for no fault of our own, we were left behind.” He told Newshub he wants to ensure that disabled people are fully included because “we have a lot to give, a lot to share”. “I hope that disabled people are seen as real people, that they can make fantastic contributions to New Zealand society and to our communities.” In 2008 he was made a Member of the New Zealand Order of Merit. "Robert is well respected for his long history of advocacy work on disabled people's rights both domestically and internationally," Disability Issues Minister Nicky Wagner said. "His election to the Committee is important because it is the first time that a person with a learning disability has been represented at the highest level. It's a world first."
Robert Martin is congratulated last year at his UN nomination. Photo Nicola Garvey
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Mr Martin will spend two fourweek periods in Geneva each year of his four-year term.
Cape Finisterre is on the Costa da Morte (Coast of Death) in Galicia, northern Spain. In ancient times it was known as the doorway to the Great Beyond and many pilgrims still burn their clothes there as a sign of purification to begin their joyful return having successfully reached ‘the end of the world’.
Walking to the end of the world
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f life took a turn for the worse, who would go to the end of the world and back for you?
Almost half a million Kiwis care for loved ones who have a disability or serious condition. Most juggle paid work and family life with caring, but often carers forget to look after themselves. To raise awareness of the importance of self-care so they can 'go the distance', Carers NZ is taking a group of carers on a once-in-a lifetime walk from Portugal to Cape Finisterre in Spain, once known as the end of the world. The Walk for Wellbeing takes place May 2 -16, with Carers NZ
filming it for a documentary to raise awareness of carers and their important role in family life and society. Two thirds of carers experience depression and many are injured while supporting others. Carers NZ’s wellbeing resources include strength-building exercise programmes, meditations, a Time Out planning guide, helpful information packs, and emergency planning tools. Each day of the 240 kilometre walk, Carers NZ will remind carers back home that to keep supporting others they need to look after themselves – encouraging them to plan 30
minutes’ time out each day of the journey to get into the habit of regular wellness breaks. At Finisterre on May 15, walkers will release heart-shaped 'flying lanterns', attaching messages submitted by carers; their hopes/ dreams, wishes, memories, and tributes to loved ones who passed away. To follow the Walk for Wellbeing visit www.facebook.com/carersnz or www.carers.net.nz. To release your own message at the end of the world email centre@carers. net.nz. Donations go towards trip expenses and ensuring that Carers NZ’s services remain free.
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Opinion
The gendered role of caregiving By ROBYN HUNT
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he recent court case concerning the tragic murder of Ruby Knox, who had autism and other impairments, by her mother Donella Knox, has caused me to reflect on the gendered nature of caring in the disability community. Traditionally women have been caregivers in families, and many have sought in recent years to have the caregiving role valued, both in the home and in the workplace, winning one or two battles over the struggle to be paid a fair wage for caring work. Historically many of those who have fought for access to education and quality care for disabled children have been their mothers. It was always my mum rather than my supportive dad who did battle with teachers over my learning needs. She always took me to the ophthalmologist and the optometrist. In families where there are disabled children, women may be sole caregivers – the marriage break-up of parents
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of disabled children is reportedly higher than in the general population. Men are still generally paid more than women, so they are the breadwinners, leaving women as the primary carer in two-parent or more diverse families.
presented by impairment/s and the societal response, or lack of. Both women had significant mental health problems. Prison seems to have done little to help Janine Albury Thompson, as she was convicted of setting fire to a church soon after her release.
Women still have the lion’s share of caring. Statistics New Zealand tells us that in 2006 (the latest census figures available) there were 155,205 unpaid male carers, and 264,126 unpaid female carers. Nothing changes.
Yet families who choose residential care for their disabled offspring can feel criticised and judged for their choice, according to a recent newspaper story. Women carers could be forgiven for thinking that whatever you do
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It was always my mum rather than my supportive dad who did battle with teachers over my learning needs.
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Fragmented and ill-co-ordinated disability support systems don’t adequately support women carers.
you can’t win. Criticism would be best directed at a state system which inadequately supports disabled children and their parents.
Donella Knox, and Janine Albury Thompson who murdered her autistic daughter 20 years ago, were both sole parents – a hard ask for any parent, let alone managing the complexities
Women have been told how to care for their kids by male medical and other male authority figures in the welfare system since Truby King* and the inception of Plunket. Twenty years ago mothers were
held at fault for autism in their the needs and rights of a disabled a disabled mother. There are children. In earlier times when mother. In one instance a many happy and well-adjusted eugenicist theories were popular, disability service provider was families including disabled poor, disadvantaged and disabled happily able to meet the need children and/or parents. Most of women were seen as problematic from its resources. these have wider supportive mothers who should not have networks of extended family and children. There friends and work is still a thread of hard to build strong Other disabled women have been eugenicist thinking denied adoption, although couples where families and lurking in some the adoptive father is disabled have been communities. quarters today. The African adage “permitted” to adopt. that “It takes a Disabled women village to raise a are carers too. Twenty four Other disabled women have child” is a cliché, but nonetheless percent of New Zealanders are been denied adoption, although true. The more we are able to disabled, about half of them are couples where the adoptive support each other in our female. I know disabled mothers father is disabled have been parenting roles, the more fulfilled, who had their children taken away “permitted” to adopt. Section 8 included and valued disabled from them simply because of of the Adoption Act still allows for people will be. their perceived inability to parent disabled mothers to have their because of their impairments, children arbitrarily removed. – Robyn Hunt (ONZM) is leading to difficulties for several a disabled mother and generations. This fear is still felt by The rise of second-wave feminism grandmother. She is a writer, was less helpful to disabled some disabled mothers. blogger at mothers than might have been www.lowvisionary.com, a As a Human Rights Commissioner expected. The focus was, and still disability and communications I encountered women who were is largely, on non-disabled women accessibility consultant, parenting alone, and who needed as carers. This has resulted and former Human Rights support while their children were in exclusion and continuing Commissioner. still physically dependent. They marginalisation of disabled were good mothers, denied that women, and their role as mothers. * Sir Frederic Truby King CMG, (April 1, 1858 – February 10, 1938), generally known as Truby support because the system did King, was a New Zealand health reformer and Of course there are exceptions to Director of Child Welfare. He is best known as not see fit to support non-disabled the founder of the Plunket Society. every rule. I was well-supported as children, taking no account of
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Feature
Goals of a
Global Messenger By CLARE CHAPMAN
P
addressing intellectual disability, ortia Johnson, 23, is just like Portia has a wide range of Special Olympics and their own achievements and interests to any other 20-something; experiences. boot. Her latest is election into into music and wants the Special Olympics Global to go to the pub. She’s keen Swimming is something Portia’s Messenger programme late last to go to New York to see her been involved in for nearly as long year. As a Global Messenger, favourite musician – Taylor as she can remember. “I think I Portia will travel independently to Swift. She works part time as was about eight when I started an administrative lessons and it went assistant at the ... you have people handing out ribbons, from there really.” Waikato Times and, it’s often a mayor or someone from the like most in her She’s modest in government.... I want to get paralympians generation, she’s her achievements, to hand out the ribbons, that’s one of got her smartphone and it was only my goals this year. close at all times. with a bit of Having left home for prompting from meetings, and develop and work a flat, then returned to the nest, mum Karina that it became clear on her goals – a personal goal, she wants to go flatting again. her swimming coach found a lot of a sporting goal, and a goal as a inspiration in Portia. But Portia is unique. She was Global Messenger. born with a mild form of Cri-duTeaching Portia to swim, and The Global Messenger Chat syndrome, a chromosomal seeing the different ways children condition characterised by programme is about educating learned, prompted her coach to athletes to gain the skills and intellectual disability, delayed start a Special Olympics swimming confidence to spread the development and weak muscle team/school in Te Awamutu, and message and vision of the Special to this day she remains Portia’s tone in infancy. She completed high school in a special needs Olympics movement. They coach and mentor. speak within their community unit within a mainstream school, “Swimming is good for fitness, and and around New Zealand at and hasn’t let her disability it’s good because I know heaps seminars and conferences, hold her back.
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A proud Special Olympics Global Messenger. Portia trains at the Trust Waikato Te Awamutu Events Centre every week. Photos: Sue Pairaudeau
of people through swimming and make friends,” Portia says. “We sometimes travel for competitions around New Zealand too. I did the nationals in Dunedin and last year I did an international competition against Australia.” When she mentions the international competition her eyes light up and it’s clear this is where one of her passions lies. To become a Global Messenger, Portia first had to be nominated, and then selected from a large group of applicants – she is one of 10 messengers this year. She went to her first workshop as a Global Messenger in Wellington earlier this year, and it was a significant step for her travelling alone. “It was a bit different. There were people meeting me at the airport ’though, and I have flown to Australia myself too, so it was OK,” she says.
For sport, her goal is to master the art of tumble-turns so she can improve her speed.
Her 2017 year as a Global Messenger, swimming training and personally, will be a busy one.
Portia’s also keen to speak in schools about Special Olympics. “I’d like to get people more aware and more people involved in it,” she says.
She swim trains once a week, is involved in Riding for the Disabled, works part-time, and has a host of interests including modelling, which she’s had some success with so far.
“When we go to competitions, and you have people handing out ribbons, it’s often a mayor or someone from the government. And I thought, well that’s a bit boring. They aren’t inspirational and they can’t help swimmers. I want to get paralympians to hand out the ribbons, that’s one of my goals this year.”
She’s a 20-something with lofty aims and is well on her way to achieving them.
Public speaking is no new thing for Portia, whose debut was an emotive and well-received speech to her high school in her final year. “You couldn’t hear a pin drop,” she says. “I had seen my friends in the special unit bullied and I couldn’t be head girl or anything, so I decided to do a speech about it.”
Opposite page and above: Portia modelling. Photos: Stellar Management
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Support Parents
Autism enables artist to
create autonomous abstracts By CLARE CHAPMAN
W
hen Jan Hastie’s daughter Bricharne was born 19 years ago, she seemed to develop normally. She was the youngest of three children and walked and talked and met all the major milestones as expected. By the time she was two-and-a-half ’though, things changed and Jan realised something was different.
disability and she pushed to have Bricharne tested when she turned 13. The tests showed that she also had an intellectual disability and Jan was able to increase her entitlement to funding, which has opened doors for Bricharne ever since.
Bricharne is about to open her second art exhibition in her hometown of Rotorua. It’s a feat driven by her She’s always loved art.. She learned to mother as a way to develop speak with a picture communication Bricharne’s system (PECS) so images have always innate talent been a way to engage with her, for art and creativity. world. But she’s 19 and also has “She’s always loved art right a lot of the characteristics of an adolescent – she likes rock music, from when she was little. She learned to speak with a picture will only wear the clothes she communication system (PECS) so chooses (which at the moment is images have always been a way only pink things), but then she’s to engage with her,” Jan says. still happy watching the movie Nemo over and over again.” “We drew pictures with her “Bricharne probably functions at a six or seven-year-old level in terms of her understanding of the
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“She seemed to develop language but then it almost stopped overnight,” Jan says. “Then she started regressing, only really accepting me as the primary caregiver and her language basically stopped altogether. To me, it seemed like she switched off and then didn’t really want to connect with us any more.” She enjoyed being left to play alone, wanting the same toys obsessively. By the time she was three, Bricharne was diagnosed with Autism Spectrum Disorder. Jan knew that often autism is comorbid with an intellectual 16
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it that hold people back. She is completing a Master of Science in health psychology at Massey University, and plans to continue on to a PhD in 2018 to research autism. This desire of Jan’s has, quite possibly, changed the landscape of her daughter’s life.
Since Bricharne was diagnosed, Jan has made it her life’s mission to understand autism more, and to focus on the benefits of the disorder rather than the parts of
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and wrote words under them. For Bricharne, it’s been a focus throughout her life.” When Bricharne left Kea Street Specialist school, her needs were
Bricharne gets creative through expressive art. Photos: Jan Hastie
moved from high to very high needs at her mother’s insistence, and as a result, she has been allocated funding worth $17,000 annually for the rest of her life through the Ministry of Social Development that links to an art programme. “This is, in fact, the only way to access this funding. Often the ORS-verified level of funding is much lower than the reality of the experiences of the school or the level of need of the student, and a parent needs to be aware of this factor prior to leaving the education system.” For Bricharne, with her mother’s support, that has meant that the family has been able to engage an art tutor for Bricharne who works with her on a weekly basis to develop her skills, and provide her with materials with which to work. CCS Disability Action is the service provider for this particular funding. “Her tutor has organised exhibitions for Bricharne and works with her to help her learn and experiment with different
materials and mediums in art,” Jan says. Bricharne clearly has a natural talent for painting, creating pieces that resonate the work of Jackson Pollock and his contemporaries. It’s an abstract style and one that develops and evolves over time, but one that has been well received both here and overseas, with much of the work from her latest exhibition being sold to both New Zealand and global buyers. “In a way, Bricharne’s autism supports her to do art without considering what anyone else thinks. She’s only interested in doing what she wants and how she wants to do it.” She is autonomous and selfdetermining; free from the contexts of what art is, and able to freely express her ideas. Bricharne doesn’t often say much, but to Jan, her enthusiasm for art is clear. She often makes comments like, ‘great job’ or ‘perfect’ when she’s finished a piece, and when Jan goes to see the work she says it's invariably
stunning. Jan asks Bricharne what each piece is called and they are named accordingly. So far Bricharne’s had two exhibitions at the Rotorua Library and another is due to open at the beginning of April 2017. She’s also got a Facebook page ASD Art for Me, where images of her work are uploaded and it’s developing quite a following. The upcoming exhibition Vicarious Futurity was named by Jan. “It’s a psychological term that means ‘hope for the future’. For us, using Bricharne’s strength as an artist, and for me as a parent being able to set this up in a sustainable manner that will be accessible across her lifetime – that supports me to have hope for the future.” Not interacting with the world like others creates a certain freedom. Bricharne’s world is one that isn’t often explained; it’s a vivid world that’s depicted in her skilfullycreated bright, abstract canvases. – Jan Hastie is a Parent to Parent-trained support parent. 17
Weathering the storm
Leaders and siblings at the Auckland SibCamp, Piha.
By STEVEN MAHONEY
W
ipers on full, lights on full, peering through cascading sheets of rain, I made my way slowly along the winding road to Piha, Auckland. Arriving at the ‘tiny house’ accommodation, I unpacked and clambered up to the loft bed, happy to find shelter from the rain. As it turns out, I was not the only one that weekend looking for respite from the elements. The next day I met an incredible group of young people who truly understand what it means to weather the storm. I was there to film the kids, teens and leaders attending the March SibCamp at Mill Camp in Piha, Auckland. For those of you who, like me, may not be aware of SibCamps, they are weekend retreats for young people who have brothers or sisters with a disability. To be honest, before joining the team at Parent to Parent I had never given too much
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thought to the siblings of disabled children. After my experience at Mill Camp however, I need no more convincing as to the value of SibCamps in the lives of those who attend.
judgment forms the foundation of these discussions. SibShops allow young people to discover that although their circumstances can sometimes feel lonely, they are not alone.
Fun was a key focus of the camp. Archery was a highlight for many, even for the kids who were not much taller than the bows themselves! First aid classes included both theory and practise, with a strap-on bone protrusion and puddles of fake blood. My personal highlight was the talent quest. From interpretative dance, to soulful singing, to stand-up comedy, every performer was enjoyed and encouraged.
And the weather held off. For the most part. Even if the forecast thunderstorms had hammered the roof and lashed the dormitory windows, I doubt whether it would have made a drop of difference to the attitude of these kids. There was no mistaking the patience and acceptance being developed in the hearts and minds of the young people at Auckland’s March Piha SibCamp.
SibShops – a chance to sit down in small groups and talk about the challenges of having a disabled sister or brother – ran throughout the camp, giving kids a chance to connect and communicate on a deeper level. Naturally I did not film these workshops, as freedom to speak your mind without
– Steven Mahoney is the Communications Advisor for Parent to Parent New Zealand. The footage taken of the weekend will be used in a variety of promotional videos and materials for Parent to Parent, SibSupport and Care Matters.
Global links
Sweet taste of success: Puneeta’s story
P
uneeta lives in a village in Uttar Pradesh, one of the largest and most populated regions of India. It is home to the poorest people in India, many of whom rely on agriculture for their livelihood. A large number are subsistence farmers living with a disability, who find access to their fields very difficult. Twenty years ago, when Puneeta was five, she was afflicted by the polio virus which left her paralysed in both legs. Since then she has had to move by dragging herself along the ground using her hands. Puneeta often had to crawl through mud and endure insults from the neighbourhood children who referred to her as “a waste of space” or “The Cripple”. Four years ago cbm started an organic farming project in Uttar Pradesh which encouraged
“
enabled 530 families with disabilities to transform their lives and plans to help a further 240 families in the next two years. As part of this project Puneeta was given advice on how to apply for Government funding to finance her special wheelchair tricycle. She was also given advice on how to start Puneeta is now a success story. beekeeping. She was supplied with modified are often left behind as family beehives which she could access members see them as a financial from her customised tricycle, so burden." she can check the health of her bees, feed them and remove Puneeta’s new-found confidence the honey. The beehives now is the result of her journey with a generate 84 litres of organic cbm-supported disability-inclusive honey a year which is sold at a organic farming project which was premium price at the local market. set up for local farmers.
I have an identity of my own …. People with disabilities are often left behind as family members see them as a financial burden.
sustainable economic development and assisted farmers to lift themselves out of the cycle of poverty. Since then cbm has
”
In addition to the beehives, Puneeta has been supported with a machine that is used for extracting oil from mustard and sunflower seeds grown locally. She purchases the seeds from local farmers, extracts the oil and sells it as an organic product at the local market. These changes have transformed Puneeta as she says: “I have an identity of my own. It was not the case earlier when I was seen as a burden. "People with disabilities
cbm NZ programme officer Karen Jack, who has spent time with Puneeta, said: “There are literally hundreds of people like Puneeta who need this chance to lift themselves out of the cycle of poverty and disability”. – cbm is an international Christian development charity that seeks to support those living with the double disadvantage of living in poverty and with a disability. It provides diversified services where needed most in the areas of eye care, ear health, livelihoods, education, rehabilitation, Neglected Tropical Diseases, advocacy and emergency response. Last year it provided medical services to over 10 500 000 people across 63 countries. To find out more visit www.cbmnz.org.nz
Beekeeper Puneeta tends to her bees using her wheelchair tricycle.
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Books
Birds can be . . . extremely anxious creatures
A
ustralian Kathy Hoopmann has been a full-time author for 17 years, with 21 books translated into 13 languages. Here, she talks about her most recent publication All Birds Have Anxiety, released this month.
of anxiety but still give hope,” she says.
After a colleague first suggested Kathy write about anxiety, it wasn't an idea she relished instantly. It was one, 'though, that grew in her mind over the following eight years.
“I wanted this book to achieve two main things. First, I wanted my readers to come to a full understanding of the unrelenting enormity of anxiety and how it pervades every aspect of a person's life, day and night,” she says.
When another of her books All Dogs Have ADHD was released in 2009, a psychologist who helped her research it propelled her into thinking about this next project. He said: “A huge portion of my patients, both adults and children have some sort of anxiety related issue.” But for Kathy, who had no experience with anxiety and knew virtually nothing about it at the time, it wasn't a project she immediately jumped into. “Jump forward eight years, and during that time I've encountered numerous people with a whole variety of anxiety issues. I've seen adults crippled with it and know children gasping for breath because of it. It disrupts lives ... it strains friendships and hurts families. I wanted to write a book that could sensitively but realistically reveal the symptoms 20
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After extensive research Kathy says her eyes were opened to the extent of anxiety, and how it can completely change a person's life.
“The second thing I wanted to achieve was that this would be a positive book of hope. I spoke to psychologists, doctors and psychiatrists to learn about the methods they taught to deal with anxiety on a day-to-day basis. I chatted with people with anxiety and asked them what helped and what didn't.” Kathy's next step was to summarise the answers into the simplest language she could, and she admits that while not everything in the book works for everyone, the important thing is that there are things that can help. “Anxiety does not have to rule a life forever. At the very least, it can be tamed, even if it never goes away completely.” To those who do deal with anxiety, Kathy says this:
Australian author Kathy Hoopmann.
“Anxiety is horrible and lifecrippling. But you are not horrible and your life does not have to be crippled forever. Get out and enjoy nature, be with people who love you, listen to the wisdom of others who have found ways to cope with their own anxiety and, if necessary, never be afraid to seek professional help. Then you can dare to hope for the future.” – All Birds Have Anxiety, by Kathy Hoopmann. For a 15% discount on the purchase of two books or more, use the code BClub17 on the www.footprint.com.au site.
WIN A copy of All Birds Have Anxiety To go into the draw to win this cool book, visit the competition on our Facebook page, like and share! Easy!
By Kathy Hoopmann. Jessica Kingsley Publishers, released March 2017. Reviewed by Parent to Parent NZ and Altogether Autism researcher Rebecca Armstrong, MAppPsy, BSocSci (Hons). This book is one in a series written by Kathy Hoopmann. Other books include All Dogs Have ADHD and All Cats Have Asperger’s Syndrome. Kathy has a way of explaining the complexities of these conditions in such a way that parents, teachers, siblings, children and the individuals experiencing it themselves can relate to. It draws you in from the beginning with the beautiful photos that jump
out of the page. The text takes little effort to read yet powerfully illustrates what anxiety looks like day-to-day, how it feels in your body, and how it impacts on people’s lives; including their abilities to perform everyday tasks and make decisions. The author goes on to explain how self-talk intensifies anxiety, but used positively can be a powerful tool to challenge the negative impacts of anxiety.
I like the way it ties together the interactions between feelings, thoughts and actions in a comprehensive manner. All of the known recommended strategies for anxiety management are cleverly incorporated into the text in a manner that makes it seem very achievable. I think anyone who has experienced a moment of anxiety can relate to this book. It would be a useful a resource for people of all ages.
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Our people
Walking the unknown, but not alone By CHLOE HOVELL
I
t’s been nearly four years since we learned the reason for the differences I saw in my eldest son Asher. He was diagnosed with muscular dystrophy, which is a progressive muscle disease. He has had a lot of testing and, as yet, his medical team have been unable to determine the genetic
cause of his condition. He is currently part of an overseas study which involves whole genome sequencing in an attempt to give him a complete diagnosis. As his mum, it’s been hard for me waiting for the diagnosis. While we know his muscles are breaking down, we do not know how quickly his condition will progress or what the future will hold for him. We focus on giving him the fullest and most positive life we can – he wants to try everything. With support from a number of organisations, Asher has been rock climbing, sailing, surfing, competed at the Halberg Junior Disability Games and many more awesome experiences. It’s important to me that he is able to try these things while he is able to enjoy them heartily. Our lives have been reshaped with this
unexpected direction, and it did take time to grieve the loss of what I had imagined for my boy. I have attended two Renew courses through Parent to Parent Whangarei and found them to be extremely helpful in understanding my own grief and how that was impacting our family. The initial grief and denial has subsided, and we acknowledge that, for now, we can not know how things will look for him in the future. Life has settled into the unknown. We are so blessed to have a great support system around us and have many things to look forward to in the future. I am so lucky to have found other parents through organisations like Parent to Parent to walk this journey with. Together we are stronger and we can not only face anything life throws at us, but reshape it into a positive future for our special kids. – Chloe Hovell is a Whangarei mum who hopes to train as a Parent to Parent support parent.
Welcome to new team member
P
arent to Parent NZ is excited to have Steven Mahoney join as its Communications Advisor, based at the national office in Hamilton. Steven comes to us with a background in marketing and communications, as well as design and video production, having worked for a variety of television and film companies as well as in the not-for-profit sector.
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He recently moved to Hamilton from Auckland and is excited to escape the traffic and ridiculous house prices! Steven also has experience as a teacher aide. He has worked with a range of students, from those with profound mental disabilities to higher-functioning students living with autism or Asperger syndrome.
“I’m thrilled to be here. It’s a chance to take all my experience and put it to use in a role I really believe in.”
Melissa Dixon Melissa, 34, has worked at Parent to Parent for five years. She’s based at the national office in Hamilton assisting with administrative work for two hours each Tuesday morning. What do you enjoy most about your job? I love the people and the environment. It’s a great place to come and work and that’s why I’ve been doing it for five years now. What do you find most challenging about your role? Well, I don’t really find it challenging. I’m a really fast worker and I get everything done on time so I normally have a bit of time left over at the end. What do you like to do in your spare time? I like going for trips, shopping and playing with my cat Lucy. I love clothes, jewellery and makeup, and visiting Christchurch, Dunedin, Australia and Tauranga. I also like taking photos of beaches and signs and scenic places. What are your goals for 2017? I would love to learn to drive a car this year, but then again, buses go everywhere cars go now, so I’m not sure if I will. At work, I’d like to learn how to
answer the phones and do some filing and computer work, and maybe help with reception. What’s your favourite book or movie? I’ve got Sky at the moment so I’m watching all the movies on there. I love scary movies so I’ve been watching The Nightmare on Elm Street, The Grinch That Stole Christmas and Terminator. I like to get into a good book too if it’s an adventure one. And I like reading magazines, especially Women’s Weekly and OK!. What’s your favourite food? Spaghetti bolognese, lasagne and macaroni cheese. I’ve been cooking since I was about 11. Banana cake is my favourite thing to make, but I make anything and everything.
Advertise in this magazine! Reach 1000s of New Zealand parents - Parent to Parent members and volunteers nationwide - Government ministries - Child, health and disability organisations - Mayors and city councillors - Health professionals and services - Early childhood centres - Schools
Links to e-editions are distributed via our 11 regional offices through their Facebook and e-newsletter networks, plus overseas to child disability networks and advocates.
E-editions and back editions are accessed via www.parent2parent.org.nz Parent to Parent’s quarterly magazine is distributed in March, June, September and December. For advertising, contact Sue Pairaudeau 0508 236 236 or email suep@parent2parent.org.nz
Parent to Parent is offering you the chance to own a one-of-a-kind piece of New Zealand history.
Famous Kiwis up and down the country have put paintbrush to canvas to create entirely unique pieces of Kiwiana that could be yours in a matter of days! Looking for a minimalist painting by Mene? A cubist by Coffey? Neo-impressionist by Nash? Visit www.parent2parent.org.nz to read up on our celebs and fall in love with their artistry as they create for a cause. This auction will run from 21-31 May 2017 on TradeMe
'A Kiwi in Kaitaia cruising in his Combi' by Itty Bitty Beats.
Our celebritiy artists include: • • • • •
Richard O'Brien Suzy Cato Rob Hamill Eddie Dawkins Kath Bee
• • • • •
Itty Bitty Beats Aaron Fleming Anna van Riel Claudia Gunn Brenda Lawson
• • • • •
Chris Martin Dion Nash Bernice Mene Greg O'Connor Tamati Coffey
If undeliverable please return to Parent to Parent, PO Box 234, Hamilton 3214
164497
164497