PV I.O R G.N Z
FAC E BO O K .CO M / PVI N Z
We also have a private group for the parents
PARENTS OF VISION IMPAIRED NEW ZEALAND INC ― SUPPORTED BY BLIND + LOW VISION NEW ZEALAND
eVISION NEWSLETTER #108
SEEK YOU R D R EA M S , THE T IM ES T H EY A RE A C H A N G IN '
Time For A Change
E V I S I O N 10 8
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The E ditor ’s Desk Being an old bugger, I am allowed a little artistic licence as I editorialise for the last time!
The Times They Are a-Changin' Bob Dylan Come gather 'round people Wherever you roam And admit that the waters Around you have grown And accept it that soon You'll be drenched to the bone If your time to you is worth savin' And you better start swimmin' Or you'll sink like a stone For the times they are a-changin' Come writers and critics Who prophesize with your pen And keep your eyes wide The chance won't come again And don't speak too soon For the wheel's still in spin And there's no tellin' who That it's namin' For the loser now Will be later to win For the times they are a-changin'
Bob Dylan. Photo by Daniel Kramer, courtesy of GRAMMY Museum
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As Time Change We Need To Be Conscious Of Our Strengths And To Me That Is The Power Of Communications And Networking. "The Times They Are a-Changin'" is a song written by Bob Dylan and released as the title track of his 1964 album of the same name. Dylan wrote the song as a deliberate attempt to create an anthem of change for the time, influenced by Irish and Scottish ballads. Released as a 45-rpm single in Britain in 1965, it reached number nine in the British top 10.[1] Ever since its release the song has been influential to people's views on society, with critics noting the general yet universal lyrics as contributing to the song's lasting message of change. Dylan has occasionally performed it in concert. The song has been covered by many different artists, including Nina Simone, the Byrds, the Seekers, Peter, Paul and Mary, Simon & Garfunkel, Runrig, the Beach Boys, Joan Baez, Phil Collins, Billy Joel, Bruce Springsteen and Burl Ives. The song was ranked number 59 on Rolling Stone's 2004 list of the "500 Greatest Songs of All Time".[2] The theme for the PVINZ conference in Christchurch October 2019! In this edition of eVision we welcome our new executive officer (EO) Dr Rebekah Graham, and the new CEO of the Blind Foundation John Mulka. Both appointments happening at a time of considerable changes in service delivery in Learner Support and special education and Disability Support services by the ministries of health, education and social development. In recent times we have as parents, families and as a group become involved, immersed and advocated for changes in these various services. Some new policies that are being implemented now are the result of that involvement. As recently as mid-September Minister Tracey Martin expressed concerned the delays and procrastination by the NZEI, PPTA and principals could see the planned roll out of 623 new SENCO positions could be in doubt and funding lost? We trust that common
sense will prevail and these much needed new resources are in place as planned. New developments around Enabling Good Lives in mid-central also deserve adequate funding and resources to achieve their long promised improvements in service delivery. The times are definitely changing! Who would have thought at the formation of PVINZ that such changes could have happened? Think about it! • That our kids could have been included like Daniel in their own show like Madagasacr! • That the Royal NZ Ballet could have included our children in presenting special matinees! • If someone had suggested to me then that our Richard would complete the Otago rail Trail twice on a tandem with me, I would have laughed and said YEAH RIGHT! • That young Lily would actually play rugby at her age and with boys! You have to be joking! • That we would see the emergence of BLENNZ in our lives and a total re build of the Homai Campus! • And the list goes on. The parent voice has been heard and acknowledged, and we need to be thankful to the Blind Foundation ( Blind & Low Vision New Zealand) for their ongoing support from day one and to the BLENNZ team throughout New Zealand forsupport and encouragement. As time change we need to be conscious of our strengths and to me that is the power of communications and networking. While we sit and applaud the marvels of the social media it still does not quite replace the power of face to face networking. Many of our life long friendships evolved that way. Let the changes begin! David Heather
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Chairpersons Report 2019 The theme of our conference this year is: ‘Time for Change’ and I could not think of a better title for our 2019 event. We have come a long way since PVINZ had its beginnings in 1983/84 when a small group of six parents met in Auckland for a weekend. At our last conference, our much loved and respected EO and Life Member, David Heather, announced his impending retirement. A great deal of time and energy by your board has gone into the successful recuitment and transition planning for his replacement over the past year. My grateful thanks must especially go to the HR commmite who lead this process and the leadership team involved in the selection of preferred candidates. The year 2020 will open yet another chapter in the life or our organisation as we welcome our new executive officer Dr Rebekah Graham. 4
The board continues it’s work on the Strategic Plan, a copy of which you will find on display at this year’s conference. Good progress has been made on a number of areas that were discussed at our last conference including the updating of our website, improving our data base information and creating opportunities in our regions to meet and learn together. More specifically, we have:
During the last 12 months the board has also developed a business plan which describes how PVINZ is going to achieve its goals from a marketing, financial and operational viewpoint. At this year's conference, there will be two of our board members retiring. Our aroha and thanks for your valuable contribution Joe and Gwen. You will be missed and our best wishes go with you both. In closing I would like to say how proud I have been to have lead the board over the past year and thank you all for your support and encouragement in my role. We are a parent led and owned organisation supporting and empowering parents and whānau. I think the following quote from a very special man within our organisation says it all: “PVINZ as an organisation focuses on the parents like no other we knew of. To us, we needed to hear from other parents, we needed to try and make the world better for other parents, to this day this still rings true... it is the “knowing” and sharing that is so important”. – Paul Manning. Ngā manaakitanga Judith Hyslop
• Continued to participate with the MOE around Learner Support development and with group advocacy seen over 600 SENCOs added to schools. • Participated in Tomorrow's schools reviews. • Met with Minister Sepuloni at parliament. • Participated and supported the work of the ACCESS ALLIANCE to see access legislation advanced in New Zealand. • Advocated in a number of areas for and with parents and families. • Hosted David Lepofski with a Hamilton workshop. • With Care Matters, supported and collaborated with three Transition workshops in Wellington and Christchurch.
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A Walk Down Memory Lane Editors' Notes from Previous Editions
ISSUE ONE, JAN 1987
Letter From America Reprinted from 'Heart to Heart', a booklet in which parents of blind and partially sighted children talk about their feelings. Published by the Blind Children's Centre, Los Angeles, USA. Dear Everybody, Katie just came home from school, spilling over with smiles and chatter, smelling of sunshine. She looks so beautiful and my heart is filled with love and pride. For a moment, I find myself thinking, "I wish she could see how beautiful she looks!" But today, this wish is just one of many fleeting 'mother wishes' spoken silently through the course of a regular day ("I wish she would clean up her room...I hope she remembers to bring her sweater home...I hope she has fun at Melanie's birthday party...") Katie is ten years old and totally blind. We have grown together and passed through many memorable landmarks together — all the usual ones (first tooth, first steps by herself, first word spoken) and the not-so-usual ones as well (first eye surgery, first mobility lesson). With time and patience, all the hard work has paid off. Her accomplishments are sometimes astounding, and today I believe Katie can do anything and reach any goal she might wish to attain. She has developed her own set of strengths and her own special way of reacting to her world. The despair and uncertainty that my husband and I felt when we first learned that Katie was blind now seems like a bad dream that happened to somebody else. Ten years ago, I never would have believed that I could feel this good, but I do! With much love, KATIE'S PARENTS
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ISSUE 35, DECEMBER 1997
What they don't teach in medical school: A parent's list of dos and don'ts for medical professionals BY MARY JANE KITCHENS
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DO Spend more time than two minutes with the parents and child. DON'T Leave the room without being absolutely sure that neither the parent nor child have more questions or concerns to discuss. DO Answer every question as completely as possible. DON'T Question a parent's need to know something. It may not seem important or even relevant to you, but if they are is, an answer is necessary. DO Take time to talk to the child. DON'T Talk about the child as if they are not in the room. DO Read the damn chart! DON'T Ask questions that are not relevant to this visit simply to satisfy your curiosity. Be especially sensitive of the child. How many times do they want to hear a list of everything that is 'wrong' with them?
DO Explain your terminology. DON'T Assume parents understand all the acronyms, euphemisms and shorthand terms you use. They are not going to be impressed by your vocabulary, but they will feel intimidated and may not ask relevant questions out of fear of appearing ignorant. Also, remember: big words scare children. DO Ask questions tactfully. That is a person with you, not just a limb or a brain. DON'T Ever, ever, ever ask a parent if they did something to cause their child's disability. This may seem obvious, but it has happened to me. Besides, it is irrelevant. What's done is done. DO Listen to the parents! No one knows the child better. Don't assume because you've read all the books and treated other children with similar issues, that you know it all. You don't. I have yet to meet a child with special needs who follows any textbook case study or definition to a tee. Each child is an individual and deserves to be treated as one.
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DON'T Use phrases like 'these children'. Our child is not to be referred to as a classification group. We are not concerned with 'these children'; we are concerned with 'our child'. DO Be sympathetic to the parents' and child's individual situations. DON'T Ever, ever, ever tell the parent and/or child that they are lucky, or that it 'could be worse'. My standard response is 'it could be better too, couldn't it?' DO Focus on positives as much as possible. DON'T Make the child 'perform' unless it is truly necessary and, certainly, not just to satisfy your own curiousity. If a parent says a child can do something, take his or her word for it. Put yourself in the parent's and/or child's shoes. How would you want to be treated? It is also good professional technique. You will get a lot more information from a parent and child if you remember that they are people, first and foremost, and 'cases' second.
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John Mulka
Blind Foundation Chief Executive
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Before joining the Blind Foundation in New Zealand in 2019, John spent his 28-year professional working career in the not-for-profit and charitable sector with national organisations in his native country of Canada. He has held senior roles providing leadership to organisations in the areas of amateur sport, at risk youth, disease prevention and a sensory disability. Over his 11-year career with the CNIB (Canadian National Institute for the Blind) his responsibilities grew progressively, culminating with him being appointed as the Vice President, Western Canada in 2015 which he held until accepting the Chief Executive role with the Blind Foundation.
guide dog programme as part of its charitable programme offerings. The programme was subsequently approved and within an 18 month time period established all aspects of operations and graduated its first working guide dogs for Canadians with sight loss.
During his time with CNIB John was regarded as a senior member of the Executive Leadership Team and amongst his accomplishments provided oversight to the research and feasibility study of the organisation potentially operating a
John’s passions include participating in almost any sport, and also being an avid spectator of major sporting events throughout the year. He also has a keen interest in current events and their impact on the world.
John was born and raised in Edmonton and is a proud alumni of the University of Alberta. John relocated to the west coast in 1998 due to a professional opportunity and resided in Vancouver since that time, until recently relocating to New Zealand to join the Blind Foundation.
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NEWS FLASH
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ANNOUNCMENT The board of PVINZ are pleased to annouce the appointment of Rebekah Graham as executive officer. Rebekah will take up her full time position in mid-January 2020. Rebekah is a Hamilton-based local who has been involved with PVINZ as a parent for the past five years. She is now in a position to use the skills and training she has developed during her post-graduate study to benefit the wider PVINZ community. Her PhD in Societal & Community Psychology was conferred by Massey University in 2018. Since then she has been working in the area of health and wellbeing, both within the health system and with Hamilton-based community groups. As a trained community psychologist, her approach to advocacy is an inclusive, community-oriented one, whereby together solutions are found that work for all parties and key stakeholders. Central to her approach is the firm belief that all children and their families have a right to health, education, and full participation in society. It is a wonderful full circle to now be able to welcome Dr Graham as our new executive officer, to have her contribute in a meaningful way to PVINZ, and to use her skills to take our organisation into this next phase. P V I N Z .O R G . N Z
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Care Matters Workshops
Care Matters, a wellbeing and resource service for carers/families/whānau of children and adults with disabilities, has been operating for almost four years. Care Matters is designed by carers for carers and provides online resources and avenues for face-toface learning, that empower people who care for a disabled family member.
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Over that time, Care Matters has facilitated 131 workshops throughout New Zealand. Rebecca Walton the development manager for Care Matters says: “What people often don’t know is we can go anywhere in New Zealand. If there are a group of families who want a workshop on a specific topic we can organise it, the only requirement is that there are nine or more people." Care Matters provides nationwide workshops tailored to local carer communities. They provide families with the opportunities to examine possibilities, consider alternatives, be strategic, develop leadership and build into carer networks. A Care Matters workshop is flexible and topics are different for each workshop depending on what people want. Some of the most popular topics have been effective communication, managing stress, navigating education, funding, what’s in our community?, planning for the future, Transition from School, Enabling Good Lives and sector change such as system transformation in Mid Central. Lianne Clarke one of the Care Matters workshop facilitators said she is often asked ‘what is our point of difference?' Care Matters facilitators “are people with lived experience of disability and family members; we acknowledge and connect with the topics and
conversations of the participants. We provide a relaxed and safe environment for people to ask questions and learn new tools”. It can be challenging sometimes to get to a workshop, a participant of a Renew workshop told us “this was my first workshop I’ve attended and I felt comfortable enough to want to attend more. I’m not one to attend workshops at all. So, that’s huge”. We hear of lots of positive stories about what people do with the information and skills they learn at workshops. Recently, one person told a facilitator she planned to use the strategies she’d learnt for conflict resolution and then emailed a couple of days later to report a positive result! Having facilitators with lived experience who are skilled and experienced, workshops that are tailored to participant needs, relevant and up-to-date information, a safe environment to explore topics - all contributes to the consistently high satisfaction rating participants give workshops. Here are a few reflections from participants: I always feel refreshed and revived after these sessions, I enjoyed the open and friendly forum, feel more confident in planning for the future. We often hear people tell us how much they value the ‘ability to connect with others who are in similar situations’. If you would like to find out more about when a Care Matters workshop will be in your area, or perhaps you would like to request a workshop in your town contact us on 0508 236 236 or email Maureen at samsno@actrix.co.nz
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Care Matters Workshops: Tina Lincoln
Tina Lincoln is the parent of three daughters including one who has unique needs and has a multitude of challenges. Tina dreams for her daughters and aspires for them all to have a purposeful and fulfilling life. Recently Tina and another family developed the start of a ‘Good Life’ for their adult offspring which has seen them move out of home and flat together.
throughout New Zealand (from families and whānau for families and whānau). ‘Enabling Good Lives’ principles and vision underpin all of the Care Matters resources created. For more information about ‘Enabling Good Lives’ go to enablinggoodlives.co.nz
They are supported by a great team of people who share the vision and principles of Enabling Good Lives. 2019 has been a big year with Tina’s daughter leaving school, moving out of home, and moving towns. This has come together from years of planning, developing skills, and knowledge to make this a reality. Tina hopes that all families and whānau can create what they want in the new era.
Care Matters workshops and resources are developed based on what families and whānau ask for. PVI collected requests from their families and whānau about possible workshop topics. From the information collected, Care Matters developed resources about ‘Transitions’ throughout life while caring for family and whānau members with disability. PVI and other local community families and whānau joined together for a series of workshops in the lower North Island and Christchurch during 2019. Feedback and connecting with family and whānau has been positive.
Tina’s personal experience has led to 21 years’ experience in the disability sector. She has worked for SAMS for 13 years developing and delivering workshops under carematters.org.nz. Tina is one of a team of facilitators who all have family members with disability. The resources developed are created from a shared resource base from families and whānau
Families and whānau can add/refine/develop their knowledge base and help prepare for the future from workshops. Tina and the Care Matters team look forward to meeting with New Zealand families and whānau. Tailored made workshops can be created at the request of families and whānau anywhere in New Zealand.
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A Star Is Born!
BY DIONNE CHRISTIAN, DIONNE CHRISTIAN
Article Reprinted with permission from Dionne Christian and the NZ Herald
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A few conferences ago young Daniel Moore – Carter sang a song to us as mum Linda watched on and encouraged his progress through the lyrics and melody.
features the original music and lyrics along with favourite characters Alex the Lion, Marty the Zebra, Melman the Giraffe, Gloria the Hippo and the plotting penguins.
Now in 2019, Daniel has performed in the stage show Madagascar in Auckland as the Ship's captain, and we believe he delivered his lines to perfection.
It's being staged by Touch Compass, the professional dance company started in 1997 to create opportunities for disabled and non-disabled performers and reach diverse audiences.
Sisters Amber and Anna Stevenson are enthusiastic dancers and performers – but it's rare they get to share the limelight. Now, they're among 41 Kiwi kids making history by starring in what may be New Zealand's first ever fully inclusive children's musical produced by a professional company. Madagascar – A Musical Adventure Junior is based on Dreamworks' beloved movie and
The Madagascar cast are aged 6-18 and almost half have some kind of disability or learning difference including autism, cerebral palsy, Down syndrome and spina bifida. Amber, 14 and a pupil at Takapuna Grammar's School's Special Education unit, was asked to audition when Touch Compass representatives spotted her tearing up the dance floor at a disco. It's the first-time she's participated in
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Performers of all abilities move it, move it in Madagascar musical
Anna (left) and Amber Stevenson, pictured with Arika Parker-Wendt, who plays King Julien the Lemur, share equal billing in Madagascar - A Musical Adventure Junior. Photo/Andi Crown
a musical theatre show of this scale and she says it's a chance to play alongside her best friends, including younger sister Anna.
"Here it's quite nice that they're both on stage and seen as Anna and Amber not Amber's got Down syndrome; Anna hasn't."
Anna, 12, is actively involved in various North Shore musical theatre groups – Madagascar is one of four shows she appears in this year – and says she appreciates the way Touch Compass works, taking time to go over things and ensuring everyone is brought together as equals.
Touch Compass' general manager Charlotte Nightingale says the company aims to create an environment where everybody thrives. That means looking at the needs of each performer, so different ways of auditioning, teaching and rehearsing are tailored to suit individuals.
Dad Mark says both his daughters love dancing but are seldom treated as equals when they do things together. "Sometimes they've done shows in classes – and the classes have been amazing – but you'll find Amber at the back or sometimes the other way round with a lot of fuss made about Amber to the detriment of Anna," he says.
Nightingale, who directs the musical, says auditions were relaxed and involved workshops, free dancing and improvisation without an emphasis on learning a block of script or set songs and dance moves. She believes the more conventional methods can exclude people, including those with anxiety, who are amazing performers.
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"You just might learn differently and need a bit of extra time to get to that stage where you can perform."
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"You just might learn differently and need a bit of extra time to get to that stage where you can perform," she said. "The opportunity to be part of a show might not even be offered so it's about us – Touch Compass –seeking out people and saying, 'Hey, this is for you – you can be part of this, too.' "Kids with disabilities often want to do something mainstream; it's about not putting people in silos – it's about everybody being part of everything that we do and that is so important in our society." The show will be fully accessible, with signing by a young interpreter who is deaf. There is also special relaxed show for young theatregoers with autism and sensory sensitivities and one show will be audiodescribed for those who are blind or have low vision.
Plus a post on our special Facebook private page for the Madagascar group, from Dianne: Awwww.....my turn to thank you all for such an incredible ride!!! Hands down THE BEST project I’ve ever worked on. (Can’t really call it work though it was so much fun!) What an amazing cast and crew, such a wonderful whanau to belong to who made this show the success it was. Part of my job is to promote the show and sell seats and having 4 sellouts, one almost sellout bar a handful of seats and a relaxed performance that was 3/4 full was down to you. Word got out about this fantastic show and all the talent on display. But I think word also got out that it was a show with a difference, where everyone was an essential part of it and supported each other. Not to mention that it was such a fun, upbeat show with incredible songs and dance numbers, costumes and make-up. I couldn’t stop grinning when everyone poured out the doors at the end saying how much they loved it and how wonderful it was. Like all of you I feel honoured and privileged to be a part of something so fantastically awesome with the best people out. And so pleased I finally got to see the steak dance today! Thank you, love the flowers, card and choccies. Love you all xxx
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Magic, Drama, Witches and Gingerbread with the Royal New Zealand Ballet
Following the huge success of last year where we were able to sponsor 25 of our vision impaired children and young people plus carers to audio described school matinee performance of The Nutcracker ballet, we are thrilled to work with the Royal New Zealand Ballet and provide once again an unique opportunity for your children. We can confirm that PVINZ will be sponsoring up to 100 students to:
Three Hansel And Gretel Audio Described School Matinee Performances Wellington
Friday 8 November 12.30pm Opera House
Christchurch
Friday 22 November 12.30pm Isaac Theatre Royal
Auckland
Friday 6 December 12.30pm ASB Theatre
Prices
$15 per student/teacher with a free companion ticket made available if required. Limited spaces. Be sure to watch this brief video clip showing footage of last year’s audio described performance by clicking here. Due to the popularity of these events, seats are allocated on a first come, first served basis: book now so you don't miss out on this tasty treat ballet!
For Bookings
Please contact RNZB Education, Community & Accessibility Manager Pascale Parenteau: pascale@rnzb.org.nz • 021 678 521
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Lily’s Struggles and Triumphs
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Lily’s rugby team in action - chasing down a ‘rip’. Lily is the one sitting down playing with leaves!
Back in 2014 Rebekah introduced us to Lily and the beginning of her journey with PVI. This included coming to terms with having a child who has additional challenges in life. Here she updates us on Lily’s struggles and triumphs, and how having a supportive community can make all the difference. Lily’s vision impairment means that she finds depth perception and peripheral sight particularly difficult. Together with her low muscle tone and delayed gross motor development this means that certain physical activities that many six-year-olds take for granted (such as kicking and catching a ball, running and jumping) are extra-challenging. Developing these skills means encouraging Lily to participate in physical activities as much
as possible. For Lily – and for us! – engaging in fun, enjoyable, activities (that we all enjoy!) makes it far more pleasant for all involved. Her dad and siblings are a bit rugby-mad, and Lily was most delighted to be included in any and all rugby-related activities. The weekly sixithgrade rugby practices and games were most definitely a fun way to encourage Lily to run around, catch and throw a ball, and practise kicking – all of which are excellent for large muscle development, peripheral vision and depth perception. Lily’s rugby club, Fraser Tech junior rugby, placed Lily in a team where the coaches were wonderfully encouraging, and who understood that the goal of Junior Rugby at sixth grade level is participation and to foster
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Lily (left) and her older sister Isabella (right) ready for action
Over the course of the season, Lily’s breaks became shorter and shorter, and her capacity to join in strengthened. By the end of winter, Lily was able to manage being on the field – by herself – for a good half each way (approx. 10 minutes each 20 minute half). This was extraordinary progress. Lily went from being an a unsure little girl who would hide behind me and refuse to go on the field, to a confident kid happily running on with her friends.
a love of the game. The New Zealand Rugby’s Women’s Rugby Strategy 2015 to 2021 is clear about New Zealand Rugby’s commitment to providing opportunities to women and girls, and to encouraging a lifelong love of the game. Sometimes these lofty goals can get lost in translation at regional level, so it was really wonderful to experience a Junior Rugby Club whose management and coaches were fully committed to providing a positive experience for all players. There were times when Lily was most definitely not keen to play. Or days when she was keen, but on arrival at the fields would become overwhelmed, hide beneath my jacket and refuse to come out. Some days she would manage only a few minutes before she would decide she’d had enough and retreat to the sidelines to eat snacks and drink her water. Throughout, other team members, parents, and her coaches would gently encourage Lily back onto the field and back into practice drills. Inevitably, Lily would join in again after a short break.
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Snacks and drinks before a game
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Lily with her ‘twophee’ – the Hansen Ripia Award for Perseverance
This progress was made possible because of the support of the wider community, in this case the Fraser Tech Rugby club, who provided a sporting atmosphere that encouraged participation and whose parents, managers, and coaches understood that rugby is about more than scoring tries; it’s also about fostering a love of the game, developing community, and providing opportunities for all our children to engage in outdoor physical activities with others. To this end, in 2015 the Junior Prizegiving Committee established the Hansen Ripia Trophy for Perseverance, which celebrates and acknowledges players who have had to overcome additional barriers and challenges.
This year, the Prizegiving Committee awarded the trophy to Lily. Lily was utterly overwhelmed and quite unable to manage getting up in front of everyone at the time, but was utterly delighted to show us her ‘twophees’ afterwards. We are not out of the woods, by any stretch of the imagination; there is a long road of quietly persevering ahead of us. However, having a wider community who are encouraging, supportive, and who understand what a difference an inclusive attitude can make to kids like Lily and families like ours certainly makes the journey far more enjoyable and sustainable.
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HE RAUKURA One I heard this tiny feather gently flurry by It rested on my pillow made me wonder why A carrier of great wisdom preserved in time and place This journey brought upon us all, unplanned yet full of grace The spiritual waters in which it grew will someday Come to nourish you. Two I gazed into the stars above and nestled in the tree a mother in a korowai gazing back at me, I marveled at her feathered plume that only I could see. We shared a tender moment of times not long ago, When mothers knew instinctively how families ought to grow, We cover them with down to keep the cold at bay Nurture them and love them and show them how to play. As they grow we share with them what they will need to know, Our values hold a special place, my Koro told me so. Three They learn about their whenua planted like a tree, The seed collected by this taonga gazing back at me. A kakano will flourish well, with tender love and care As seasons pass will shed its leaves of this we are aware. They reign upon the forest floor to form ‘Te whariki’ The woven mat that catches them my Kuia laid for me. Four A whanau builds its nest, of muka that it finds It’s strength of whakapapa spans the breadth of time When the child is ready and what will be will be With tears a falling, Nga rauru calling, We simply set them free Five I soar this tiny feather gently flurry by Resting on my pillow I understand now why. Riripeti Paine
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The 7 Habits of Highly Effective Parents Raising Children with Special Needs BY CHANTAI SNELLGROVE
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The 7 Habits of Highly Effective People written by Stephen Covey. Self-help bestselling author whose books have sold in excess of 20 million copies in 40 languages, inspired me when I was starting out in the business world. After rereading The 7 Habits, I could not help but to see the parallelism for parents raising children with special needs.
1. Be proactive
This should speak volumes to parents raising children with special needs. Be proactive; recognise that you are “response-able” to help make a better life for your child. It is most definite that you will probably have to do things outside of the normal. Translation: think outside the box. Educate yourself on your child’s disability. Do your homework. Research. Familiarise yourself with services available to you and your child.
2. Begin with the end in mind
This is based on imagination. What kind of life do you envision for your child as an adult? Imagine them going to college, living independently, having a social life. Imagine a great, world changing… and then see every detail through to the end. Develop a plan, path or road map to your child’s future and work towards the plan.
3. Put first things first
Remember to try “to live a more balanced existence, you have to recognise that not doing everything that comes along is okay". Life management — it is okay to not do everything that comes along. Set priorities for the day to day and long term, so you can live a more balanced life. Try to maintain a sense of normality. Don’t forget other family members or others in your life.
4. Think, 'Win-win'
The phrase “win-win” may be ubiquitous today, but it’s likely popularity came from Covey’s fourth habit, which means “agreements or solutions are mutually beneficial and satisfying”. Think “Win-win” every time you are negotiating. Which can be almost daily when advocating on your child’s behalf. Keep the “win-win” habit in mind when working towards solutions or agreements that will be both mutually beneficial and satisfying.
5. Seek first to understand, then to be understood
Seek first to understand, then to be understood. This habit can be used in all areas of our children’s lives. We need to become good listeners to our children, which may require more intent observation to their behaviours, schedules and activities in order to understand and respond appropriately, not just respond! This habit encourages helping our children to be understood better in their daily lives.
6. Synergise
“Synergise” assemble and build a winning and diverse team of all-stars. Choose not only the right doctors, therapists, teachers, aides, tutors, and coaches, but also, family and friends that will be effective in helping your child reach their potential.
7. Sharpen the saw
Sharpen the saw…you are your child’s best advocate. You must find ways to preserve, enhance and renew yourself on a daily basis. Without you where will your child be? This article originally appeared in 2012 on parentingspecialneeds.org, two days after we learned of the passing of Stephen Covey.
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Contact Us Chair Lower South Island Board Member Judith Hyslop Dunedin 027 896 5693 judithhyslop@xtra.co.nz Central North Island Board Member Nikki Stokes Tauranga 022 693 7653 nikki.stokes@icloud.com or nikkins.08@gmail.com
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Upper North Island Board Member Linda Moore-Carter Auckland 027 320 2693 lmoorecarter@gmail.com Upper North Island Board Member Stacey Dodd Wellsford 021 133 8949 mrsstaceydodd@hotmail.com Lower North Island Board Member Tanya Ingram Levin 021 453 366 nzgirl@windowslive.com Tangata Whenua Representative Justine Edwards Hamilton 021 264 6844 justine@pvi.org.nz Upper South Island Board Member Gwen Hooper Christchurch 022 466 2457
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Tangata Whenua Representative Treasurer Joe Graham Hamilton 027 612 1507 joe.graham@twoa.ac.nz Anywhere in New Zealand Board Member Nick Mackay Brighton, Otago 027 549 8182 nick.mackay@gea.com Executive Officer David Heather Level 1, 11 Mahara Place Waikanae 5025 04 293 8236 Home phone 04 293 6539 027 440 2073 david@pvi.org.nz
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We also have a private group for the parents