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CHAT 21

Journal About & For The New Zealand Down Syndrome Community

ISSUE 80, Summer 2018/2019 ISSN 11776323

Our People

Images from the recent photo shoot for our resource for new parents. "Little One". Read more about the booklet in Zandra Vaccarino's NEO Notes on page 26

Contents

From the Editor

REMUERA CLUB GOES OFF FOR NZDSA BALL

YOUNG ADULTS REVEL IN DEVELOPMENT CAMP OPPORTUNITIES

SHÉRI BRYNARD SHARES HER AMAZING STORY WITH NEW ZEALAND

GREAT START TO THE SILLY SEASON IN WELLINGTON

SEASON’S GREETINGS TO YOU ALL

KAIKOURA HOLIDAY EXPERIENCE

DAIN LIVES LIFE TO THE FULLEST

WHEN IRISH EYES ARE SMILING

BEATING THE AUSTRALIANS ON THEIR OWN PATCH

MOVIE REVIEW

MY 30TH BIRTHDAY WAS A CELEBRATION MILESTONE

WORKING AT AUCKLAND AIRPORT

“LITTLE ONE” BOOKLET WONDERFUL NEW RESOURCE FOR NEW PARENTS

SPECIAL OLYMPICS ATHLETES CARVE UP THE SLOPES

INCLUSION, EVEN IN SPECIAL EDUCATION!

WORLD TOUR

BIRD'S EYE VIEW

DIFFERENT STORIES OF DOWN SYNDROME, 50 YEARS APART

NOTICE

CONTACT DIRECTORY

OUR PEOPLE

ME AND MY PET

This issue of CHAT 21 was made possible with donations from Southern Stars.

Welcome to the Christmas edition of CHAT 21. Without wanting to sound repetitive, but we hope you agree that this is our best edition yet. This is not because we are doing a better job, but because of the ever-increasing involvement and support from the NZDSA membership. More and more people with Down syndrome, their families, friends and support people are reading CHAT 21 and want to share their stories and their expertise, so we are now spoilt for choice. We also look abroad at Down syndrome news and overseas organisations and in this edition you will find reports from Sheri Brynard’s experience from South Africa and Edward Bradley planning to do a Down syndrome study tour across numerous countries. Those who attended the NZDSA Ball in Auckland or the annual Youth Camp, will also find extensive coverage in this journal. Our Down Write Brilliant section is larger than ever, with Laura Davies talking about her job at Auckland airport, Ryan Gourdie about talking his life as a weightlifter and bar staff, while you will also meet the incredible Dain Whiting from Whitianga. Charlotte Rozen is reporting from the Australian swimming championships while our friends at the Special Olympics have contributed with a report from the National Winter Games in October. The Wellington Down syndrome Association had an early Christmas Party and also reported from the Frances Clarke Memorial Awards where many of our community were honoured by the Governor General. Margi Leech has provided her fourth column with education tips and of course, on the back cover you can again find the popular Me and My Pet section. All in all, plenty of reading over the Christmas break, and please share it with others who may not have signed up to have their CHAT 21 delivered. We hope our readers have a wonderful Christmas and a great start to 2020.

Disclaimer: Through the quarterly Journal, the New Zealand Down Syndrome Association will attempt to report items of interest relating to Down syndrome. The NZDSA does not promote or recommend any therapy, treatment, agency, product, political position, religion or advice. The opinions expressed in CHAT 21 are not necessarily those of the NZDSA. The editor reserves the right to make corrections to materials submitted for publication. All photos sent in to the journal become the property of the NZDSA and can be used in other NZDSA publications.

REMUERA CLUB GOES OFF FOR NZDSA BALL By Coen Lammers

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Remuera residents in Auckland are still wondering why their suburb experienced a minor tremor on November 2, after the Down syndrome shook the Remuera Club to its foundations during the first NZDSA Ball in November. The ball attracted young and old from around the country and even local residents, with no connections with the Down syndrome community, simply wanted to be part of the best party the club had seen in years. The plan for the ball was hatched when ABBA tribute band The Mermaids contacted the NZDSA to see how they could help the organisation, as they had noticed that people with Down syndrome were some of their biggest fans. The high-profile covers band, made up of Joe Cotton, Pauline Berry, and Amber Claire, offered to play in Auckland to help raise funds for the association, and in return got one of the most successful nights in the band’s history. “Can you guys please come to all our concerts,” said singer Joe Cotton, who clearly enjoyed the superstar treatment the band was getting from

their devoted fans, reminding her of the 1990s when her former band, True Bliss was idolised by teenagers around the country. The Auckland Down syndrome community and their friends and families had come out in force and in style, dressed to impress in their ball gowns and tuxedoes. From the moment the band struck up the first notes of I Do, I Do, I Do, the tables emptied out onto the dancefloor. The Mermaids warmed up the crowd with some of ABBA’s ballads, but as soon as the tempo went up, the packed dancefloor turned into a bouncing, heaving heap of happy humanity. Many ball guests who were not that used to strutting their stuff, got caught up in the excitement and boogied the night away, with their partner, their friends of just by themselves. At one stage, some overzealous fans started dancing on the stage, next to the singers and were politely asked to give The Mermaids some space to perform. The band played over three hours, including three

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costume changes, and many of the guests were walking around with sore bodies the next day, using muscles they did not even knew they had. “The legs are a bit tired today,” said Glen Jelley who visited from Otago. The response after the ball was overwhelmingly positive, with many guests posting photos and thank you notes on social media. The success of the ball immediately triggered calls for a repeat, so the NZDSA is investigating organising an annual ball. “We would love to have an annual ball, but as a national organisation we have to consider alternating each year between the North and South Island,” said NZDSA chairperson Kim Porthouse.

YOUNG ADULTS REVEL IN DEVELOPMENT CAMP OPPORTUNITIES By Coen Lammers

Lunch time with Rapid Relief at the MERC Centre

Young adults and support crew enjoying their time at the Youth Development Camp

The lucky 13 young adults nominated for the annual NZDSA Youth Development Camp in November will not easily forgot the amazing experiences they had in Auckland and the new friends they made. The participants arrived from all corners of country on the Friday, and after a few shy moments on the first day, the group were soon abseiling, bowling, joking, dancing and laughing together. Regional committees are able to put names of young adults forward who they feel will benefit and contribute to a weekend that is set up to enhance independence. Thanks to the amazing support from Southern Stars, the NZDSA is able to host a group of young adults, as well as some support people form the regional committees at the annual camp at Vaughan Park in Long Bay on Aucklandâ€™s North Shore. For some of the participants it was the first time away from their family, but with the support of

their new friends and the support staff, everyone appeared to have a really good time. Nathan Owre and Erin Smith made the trip down from Northland, Laura Davies and Scott Bowers had a short drive from Auckland, Louis Paulin came up from New Plymouth, Grace Moreton and Hugh Mark Brown represented Otago, while Cantabrian Daniel and Joel Forman, Hannah Proctor and Bella Lammers made up the rest of South Island contingent. Once everyone had settled into their rooms, the group jumped in their vans to the bowling centre where the competitive juices soon began to flow, and some participants (and support staff) were celebrating each strike as if they had just won the World Cup. The night was especially memorable because the NZDSA delegation was joined by several representatives from Southern Stars who not only funded the camp but also put the pizzas, which were gratefully accepted.

On the Saturday morning, the group walked down to the Sir Peter Blake Marine Education and Recreation Centre (MERC) which was conveniently located next door. The MERC instructors were incredibly professional and patient and help their guests to abseil down a high wall. Some of the participants were clearly intimidated by the prospect of facing a great height but thanks to the amazing encouragement of their new friends, most youngsters safely made it down the ropes. All that hard work, had made the team pretty hungry, so when the volunteers from the terrific Rapid Response team from Warkworth arrived to cook burgers and fries, they soon had a long line of customers waiting. The Rapid Response team are regular supporters of the NZDSA weekend and it would not be same without their wonderful spirit and barbeque skills. After lunch, the MERC instructors taught the participants new archery skills, and under a beautiful Spring sky, the group enjoyed a great afternoon in the park at the Long Bay Reserve. After all that activity, the group had little time to put on their evening attire before jumping into another van to travel to the Remuera Club for dinner and the NZDSA Ball, for many the highlight of the weekend. You can read more about the ball in this edition, but suffice to say that some tired bodies arrived back at Vaughan Park late in the evening. With all that dancing still in the legs, the participants had earned a huge breakfast, before spending the morning with arts instructors to display their own unique creative skills. The paintings that were created were all spectacular with many of the art pieces representing their own life stories. Once the paint had dried, it was time to pack up and drive to the airport. Everyone agreed, the weekend had gone too fast, and after some big hugs, the new friends boarded their planes to each corner of the country, promising to keep in touch. Any NZDSA member with Down syndrome between 18 and 35 can get in touch with their local NZDSA representative to find out more about the camp. Local committees can nominate participants for 2020 early next year, and the participants are selected in April.

Archery competition underway at MERC

Daniel and Mason throwing strikes at 10 Pin Bowling

NSDSA BALL HIGHLIGHT OF YOUTH CAMP By Laura Davies I was lucky to get picked to go to the Youth Development camp at Long Bay this year. I met some new people at camp from around New Zealand and had fun doing all the different activities. I did abseiling, archery, ten pin bowling and painting. One of the highlights was going to the NZDSA ball on the Saturday night with camp. They had a really good group who sang ABBA songs which we all danced to. I think all young people like me would enjoy going to a camp like this.

Joel creating his masterpiece

Bella and Erin enjoying the art class Louis on his way down the abseiling wall

HAYLEY HITS BULLSEYE AT NZDSA CAMP

FLYING AND ABSEILING HIGHLIGHTS OF CAMP

By Hayley Rydon

By Hugh Brown

I was lucky to get picked to go to the Youth Development camp at Long Bay this year. I met some new people at camp from around New Zealand and had fun doing all the different activities. I did abseiling, archery, ten pin bowling and painting. One of the highlights was going to the NZDSA ball on the Saturday night with camp. They had a really good group who sang ABBA songs which we all danced to. I think all young people like me would enjoy going to a camp like this.

I had a great weekend in Auckland. I liked going on the plane with Grace and Glen. The food was good at huge Auckland airport and seeing new things. It was fun at Peter Blake Centre and I liked the abseiling best and learning the history about the centre and Peter Blake. I went ten pin bowling on Friday night and got 109 and we had flash dinner there too. On Saturday night we all dressed up in our best clothes and went in the shuttle to the Ball. We went across the Harbour Bridge. We had dinner and danced at the ball .Great Band. On Sunday we had a sleep in and then yummy cooked breakfast with bacon and eggs . We did art in the morning and then went to the airport to fly home. Thank you for a fun weekend.

SHÉRI BRYNARD SHARES HER AMAZING STORY WITH NEW ZEALAND By Coen Lammers

International Down syndrome ambassador Shéri Brynard recently visited New Zealand and took time out from her holiday with her mother Susette to share her life story with the Down syndrome community in Christchurch and Auckland.

Shéri Brynard

Shéri’s story is an astonishing tale of success against all odds, breaking barriers and capturing hearts and minds around the world. Th e S o u t h Af r i c a n i n 2 01 7 c a p t u re d h e r experiences in a book called Shéri, Just the Way I Am, and regularly appears on television, print media and at conferences to advocate for the rights of people with Down syndrome and other disabilities. She has played roles in TV dramas in South Africa, and in New Zealand she was interviewed by TVNZ’s Breakfast programme. During her presentation in Christchurch, it was clear that Shéri is an experienced public speaker and she delivered her message with confidence and a great sense of humour.

Shéri Brynard and her audience

Despite all her achievements, it became clear that she worked extremely hard to get where is now, and she pointed out that she failed, over and over, before she achieved her goals. “But I am in good company, because even American presidents like Ronald Reagan and Jimmy Carter failed several subjects in their study before they graduated,” joked Shéri. Shéri completed her high school, and then went onto studying at her local university to complete a teacher’s degree and now works as a teaching assistant at a special needs school. She said that neither the high school nor the university made any amendments to their curriculum to accommodate her needs, so she had to deal with numerous disappointments and bullying before reaching her goals. “I refused to feel sorry for myself, and when I finally passed all my subjects we both cried,” said the strong-willed South African, who believes that self-pity does not help anyone move forward. “And you have to believe in yourself. If you start off thinking you can’t do something, you will never be able to do so.” Aside from her day job at the special needs school, Shéri travels around the world to help change the perception of people with Down syndrome. Among nearly 700 public engagements over the past decade, she was a keynote speaker at

the International Down Syndrome Conference in India in 2015 and again in Glasgow in 2018, as well as addressing a United Nations conference in New York in 2012 and a UN Self Advocacy Conference in Geneva. Her self-advocacy message of encouraging people with disabilities to make the best out of their situation, has been heard far and wide. Even Oprah Winfrey was interested in her message and feature her story in the O magazine. Shéri said that former South African president Nelson Mandela had taught her that everyone is the master of their own destiny. “That made a big difference. I realised you can’t change the wind, but you can change your sails to reach your destination.” Between her travels, Shéri loves teaching children with special needs, and it is much more than a career. “I can’t have children myself, which leaves a big hole in my life, but the children at my school fill that space for me.” Sheri finished off her presentation, asking everyone to give people with Down syndrome a chance to reach their potential and give them a helping hand where required to get there. “You can’t help everyone, but everyone can help someone.”

GREAT START TO THE SILLY SEASON IN WELLINGTON By Deborah Jones

The Wellington Down syndrome community recently gathered for l the WDSA Christmas party in Lower Hutt. There was a great turn out of children who enjoyed playing outside, face painting and a visit from a Christmas fairy and Ralph the elf, thanks to 'Fairy Cat and Friends'. Of course, Santa came too and everyone was very excited to receive a gift. The smiles on all of

their faces was lovely to see.Â WDSA have many more events coming in the new year and we encourage people to join our contact list via our website, so they can receive our newsletters to know what's going on, we also have a Facebook page where events are listed.Â Our Christmas party was a great start to the silly season and we wish everyone in the Down syndrome community safe and happy holidays.

Presidents Pen

SEASON’S GREETINGS TO YOU ALL

tirelessly behind the scenes, keeping us organised! Without Linda’s considerable organisational skills to bring everything together, events just wouldn’t happen nor go as smoothly as they do. Linda also coordinates all committee activities and meetings as well as spends a considerable amount of effort on funding applications to keep the NZDSA financially viable. This year Linda has also shouldered extra responsibilities due to our NEO needing extended sick leave following a car accident. My sincerest thanks go to Linda not only for all her efforts, but also for her guidance and support of me as I have settled into the President role. It was really great to be able to offer Linda the opportunity to attend a conference in Sydney

Season’s Greetings to you all, my first year as President seems to have flown by. The last couple of months have certainly kept me busy. In September the media contacted us in relation to antenatal screening and abortion law reforms, we have had the NZDSA AGM and a committee meeting. I was also involved with both the Youth Development Camp held at Vaughan Park in early November and the NZDSA fundraising ball held in Auckland that coincided with the same weekend as the Camp. I’m not going to go into great detail about these events as they are both reported on individually within this journal, except to say both were extremely successful and thoroughly enjoyed by all who attended. It was a privilege to be part of both these Kim Porthouse and Linda te Kaat at the NZDSA Ball experiences and bear witness to the tremendous enjoyment and pride of our in September on Down syndrome and Healthy young people who participated in these events. Aging which I also attended. Not only did we I would like to make special mention of the learn a lot that will be useful for some of the Mermaid Dance Band who offered their time and support calls we get, we were able to connect services to us for the ball. with Down syndrome organisations from across They said over the years they couldn’t help but Australia. notice that any time they played at a function For me the take home message was about the and people with Down syndrome were present vital importance that exercise and healthy eating, that they really connected to the music and were as well as social and work activities have on the always very respectful of them as entertainers, health of individuals with Down syndrome. There so they thought it would be amazing to play at a wasn’t room to share our report with you in this function especially for our community. issue, but keep an eye on the next CHAT21, where At the end of the night they said it had had been we plan to share our learnings with you and a thoroughly enjoyable event for them. hopefully they will provide a good adjunct to the I also want to take this chance to acknowledge last issues feature on Dementia. and thank Linda te Kaat, our very hard working Best wishes for a safe and happy festive season National Administrator. It is Linda who works to you all.

Down Write Brilliant

Andrew Oswin on holiday in Kaikoura

KAIKOURA HOLIDAY EXPERIENCE By STRIVE correspondent Andrew Oswin

I would like to take this opportunity to tell you what I did on my holiday in Kaikoura, and this is how it happened. My parents and I drove all the way to Kaikoura to spend a few days, with a few breaks along the way for morning tea and lunch. We stayed in a lovely beach house overlooking the beautiful coastline, scenery and the lovely blue sea.

During our stay we walked some of the way up to the Kaikoura Peninsula Walkway, the Hinau Track, and St Paulâ€™s Track with spectacular views along the hillside. Some of the time we got to dine out for dinner at The Groper Garage and The Pier Hotel. For my very first time at The Pier Hotel, I tried eating paua served with a salad, and a very big dessert of Pavlova. My father and I visited the Kaikoura Museum where I became fascinated reading about and looking at seagulls, and I also became very interested finding a picture of Captain James Cook. I have had a lovely Kaikoura experience!

Down Write Brilliant

Dan in the surf

DAIN LIVES LIFE TO THE FULLEST

Dain Whiting hardly has time to take a breath when you see the schedule of this young man. Growing up in Whitianga it is no surprise Dain turned into a beach boy. He regularly participated in Hot Water Beach Surf Lifesaving from seven years old until the last couple of years when he could not get to the beach as often because of his work commitments at a supermarket during the summer. In his surf lifesaving, Dain has attained the title of Patrol Support, he assists qualified guards and helps teach the 10-14 year olds at training. His time in the ocean has made Dain is a very confident swimmer in the mighty waves at Hot Water Beach. For five summer holidays, Dain worked at New World and this last summer he decided he needed a change and started work at Countdown. In both workplaces he is well respected and appreciated for doing such a great job. Dain has also been active with Recreate New Zealand. He has tramped the Hilary Trail, abseiled the 100-metre Lost World Waitomo and Black Water Rafting. He has traveled with them to the Gold Coast, Australia, Rarotonga and Hanmer Springs. In May, Dain participated in an eight-day Outward Bound Horizons Course in Anakiwa.

Down Write Brilliant

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He received wonderful feedback from the instructors. They said that â€œfor Dain the physical aspect of the course was a highlight. He enjoyed the morning runs and was always keen for moreâ€?. Along with his team Dain built and paddled a raft, tramped and cooked lunch on an open fire, sailed and rowed a 10m cutter and built a shelter and slept the night underneath it. The instructors said he gave it his all and was always excited for an extra challenge. Dain attended Mercury Bay Area School in Whitianga before he moved in Year 13 to the Patricia Avenue Transition Unit in Hamilton where he will live until he is 21, but he still comes home on weekends. As part of that shift, Dain he started flatting in Hamilton in April with two other young men with Down syndrome. He has learned to navigate by bus to places he frequents like Life Fit, Waterworld and KaiVolution, where he volunteers twice a week. In his spare time, he also trains with Special Olympics Waikato swimming and is on the B Team for Special Olympics Basketball. Clearly Dain is not one to sit still at home, so you might bump into him when you head to the beach, pool or basketball court in the Waikato area.

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Down Write Brilliant

WHEN IRISH EYES ARE SMILING By Andrea Heffernan

Thousands of young people with Down syndrome and other learning disabilities have been supported by the early intervention work at the Champion Centre in Christchurch. The Centre has been capturing stories on former Alumni and in this article, we catch up with Ryan Gourdie, who attended the Centre from 6 weeks old until he went to school and is now 32. 20

Down Write Brilliant

Ryan at The Bog

Ryan Gourdie lives at home in a rural setting in West Eyrton, North Canterbury with his two ‘flatmates’, as he affectionately calls them (Mum and Dad). He has three sisters, of which two live in London, they are in their late 20s. Ryan is fiercely proud of his Irish heritage and made a visit to Ireland last year with his family, part of six-week overseas trip. Ryan works part-time at The Bog, a well known Irish pub in Christchurch. Every Monday and Friday morning, Ryan makes sure things are ready for opening time. There are chairs to put down, menus and wine lists to clean and ensuring the street front is clean and well presented. I ask Ryan if he likes to drink Guiness, and with a glint in his eye he proudly pulls out his loyalty card. Two to three times a week Ryan and two other buddies are busy working with a gym trainer at Franks’ Brothers Gym in Papanui, where they lift huge weights. Hard work has resulted in Ryan competing at several regional and national competitions, and winning a gold medal at the

National Games Special Olympics in 2017. As well as the sporting prowess, Ryan enjoys the fun and banter he has with his fellow athletes while training. Ryan has also competed in mainstream competition which has been pivotal in bringing greater empathy to those involved in the sport, by integrating athletes with special needs into the mainstream. Ryan has also won gold medals for swimming at New Zealand and Australian Special Olympic Games in 2006, but power lifting is his sport of choice these days. Once a week Ryan visits a local rest home in North Canterbury where he spends time with two elderly gentlemen. They often will read books together or just chat. Here Ryan is the one giving support, rather than receiving. A n o t h e r d a y, R ya n b e l o n g s t o a yo u t h development group where he meets up with other young people and they engage in a wide range of activities. They have had the New Zealand Police and Fire Brigade in as guest speakers. Sometimes they will play football outside, do quizzes or listen to music or watch movies. ‘One of my favourite singers is Lady Gaga’, says Ryan. Ryan has an appreciation of culture, whether it be Irish, Māori or Samoan. He was an active member of several Kapa Haka groups in his school days. Ryan can speak his mihi whakatau with passion and relay his Irish ancestry with conviction. Ryan attended the Centre from aged 6 weeks to just before he turned 5 years old. Ryan’s Dad, Mike, attributes Ryan’s language skills down to the hard work of speech language therapist Jan Murphy and Marie, Ryan’s Mum, who put in many hours of work to help Ryan with his speech at the Champion Centre, those 30 years ago. The lifetime skill of being able to be understood and therefore able to engage with others was instrumental. Mike says the Centre staff were outstanding, very hardworking and incredibly supportive. “They made you feel like you’d get there, that everything was achievable.” A major highlight for the family, says Mike is that “by Ryan being accepted and embraced into employment, this truly integrates him as a valuable member of society”.

Down Write Brilliant

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BEATING THE AUSTRALIANS ON THEIR OWN PATCH By Charlotte Rozen

A few weeks ago, my mum and I went to Brisbane with my Grandma and Aunty Kirsten to the Australian Down syndrome swimming championships. We stayed at a grand apartment called the Quest Spring Hill with a pool.

We had an orientation swim at the Centenary outdoor pool and then went out for dinner. The meet started early Saturday morning with a warm-up, then a parade of teams. There were teams from New South Wales, Victoria, Queensland, Tasmania and New Zealand. In the New Zealand team was Laura Harkins, Patrick Holmes and Josh Bradley from Auckland, Luka Willems and I from Christchurch and Carlos Biggemann from Dunedin. On Saturday I swam in the 25m freestyle and 100m IM and I won a silver medal in each. I also raced in the 50m breaststroke and 50m backstroke. That night was a gala dinner at the grand Chancellor hotel. They had a disco there and it was very good, the dinner finished at 10pm because we had an early start the next day. On Sunday I won a silver medal in the 25m backstroke and a gold in the 25m breaststroke. I tried my best to beat the very good Australian swimmers to win the gold medal. I enjoyed the championships and meeting lots of other swimmers. I have qualified to go to Turkey for next year for the Trisome games.

Down Write Brilliant

MOVIE REVIEW:

RIDE LIKE A GIRL By Andrew Oswin

Recently I was given the opportunity to attend a corporate function at Westfield Riccarton Hoyts with my parents.

We went to see Ride Like A Girl. It is about a female jockey who became the first woman, in its 155-year history, to win the Melbourne Cup event in November 2015. I found it competitive, filled with happy celebrations, joy, laughter, sorrow, love, breathtaking moments and it was really moving. The direction of this film showed determination, participation, patience, success and suspense. I thought the movie had been very well directed and set. This was based on a true story. What interested and fascinated me is that a young man with Down syndrome guest starred as himself. He understood the nature about horses. His father knew the experiences of how to look after, care for and to tend to horses. I hope that many readers will enjoy reading this review and go and see the movie!

MY 30TH BIRTHDAY WAS A CELEBRATION MILESTONE By Andrew Oswin

I celebrated my 30th Birthday Celebration with my family at Strawberry Fare having a very special dinner. This is one of the best highlights for the year for me with my parents who have always helped to acknowledge, care, love and support. They have given me a diverse, enriched, happy, healthy and valued life. I would like to thank them for everything they have done to help me to reach the age of 30. I would like to take this opportunity for the Down syndrome community to acknowledge the 30 years that I have lived.

Me & My Job

Laura and her Ara Campus work team

Laura at work

My name is Laura Davis and I am 24 years old. In Feburary, I moved from Taupo to Auckland with my mother as I couldnâ€™t get a job. I had done some voluntary jobs and work experience but couldnâ€™t get a part-time paid job. I completed a level 3 Food and Beverage course with MIT. They were very welcoming and helpful as I was the only person with special needs on the course. Then we joined the Polyemp employment agency that is for people with disabilities and they helped me to get my job and still support me.

WORKING AT AUCKLAND AIRPORT My job is with the Compass Group working at the Strata lounge at Auckland International airport. I am a lounge assistent in the lounge helping customers with any questions they have, cleaning tables and refilling stock. I have to travel for over an hour on two buses and a train to get to work but I love being part of my work team.

SUPERSTARS HONOURED BY GOVERNORGENERAL By Andrew Bulled

Mithu receiving her award for the 16 and above age category

The 29th annual Frances Clarke Memorial Awards ceremony on November 13 was yet another fantastic celebration of the amazing achievements of this yearâ€™s superstars. Members of the Wellington Down syndrome community turned out in their droves to support the event, which was held in the beautiful ballroom at Government House and hosted by our Patron, The Governor-General, Her Excellency the Rt Hon Dame Patsy Reddy. The MC duties were performed by the seasoned Charlotte Gendall and stirring speeches were delivered by actor Jacob Dombroski, a previous winner of the over-16 year category, and Paula Tesoriero MNZM, Disability Rights Commissioner and world champion athlete. Congratulations to our three winners:

8-16 Year Category: Hinerangi CollinsMohi from Porirua. Hinerangi shows determination and a passion for sports, dance and music. She works hard to master skills in Ballet, Jazz, swimming, tennis and school activities such as Polyfest. She passed her Grade 2 Ballet Exam with Highly Commended and is working hard to prepare for her grade 3 exam. For the last three years, Hinerangi has played netball for her school in a mainstream school competition.

16 and Above Category: Mithu Sathiyaseelan from Lower Hutt. Mithu is a young woman with Down syndrome and is deaf. Until two years ago, Mithu used a walker and wheelchair due to a number of physical challenges. In the last five years, she has been working actively on strength and balance using an intensive Interaction approach. Mithu has developed independence with mobility and transfers. She was able to travel home to Sri Lanka with her family, not needing her wheelchair or walker!

Community Category: Sue McFarlane. Sue has worked as a Neurodevelopmental Therapist in Porirua for approximately 35 years. Sue receives an award for her service to babies and toddlers who were born with Down syndrome and their whanau. Sue will do anything for families to help them attend appointments, support their childâ€™s development and navigate the health system. We would like to thank Government House for hosting this spectacular event and our committee members for all the hard work to make it happen.

NEO Notes

“LITTLE ONE” BOOKLET WONDERFUL NEW RESOURCE FOR NEW PARENTS By Zandra Vaccarino National Executive Officer NZDSA

Once again, thanks to an amazing group of volunteers, a new printed resource “Little One, a little guide from parents who have gone before you” was launched at the NZDSA AGM. This booklet will be an additional resource that will be included in the current New Parent Pack and is a little guide written by parents sharing information they wish they had received when their child was born. It is an inspirational booklet with useful information and beautiful photographs for new parents. This booklet will be useful for parents to record milestones and important events in their child’s life and could be a treasured keepsake for parents. The NZDSA would like to thank Pip Smyth for leading the charge with writing and collating this booklet, all the parents who shared their stories and wisdom, and Teresa McClean from thegather. co.nz for the Graphic Design. Special thanks to our sponsor, Southern Stars for the booklet and Emily Raffills from Point & Shoot photography for capturing beautiful photographs of all the gorgeous children.

International Volunteer Day – 5th December Thank you to all the past and current volunteers, who through their pioneering contributions continue to shape the Down syndrome community in Aotearoa. I hope that on December 5, you all took take a moment to celebrate International Volunteer Day.

This year, I would especially like to acknowledge the following volunteers: the parents, family and whānau who have contributed to the development of additional digital resources for the existing New Parent Pack. These resources consist of a few new digital stories “Congratulations” and “Couch Conversations with Parent’s”. All the digital stories are available on the NZDSA website. Volunteering is so pervasive it's invisible. We take for granted all the things that have been pioneered by concerned, active volunteers. - Susan J. Ellis

NZDSA 2019 Annual Report The NZDSA hosted the Annual General Meeting in October in Palmerston North. If you would like to read the NZDSA’s Annual Report, please email me at neo@nzdsa.org.nz and I will email you a copy.

Youth Development Camp Southern Stars Thank you Southern Stars for making it possible to host the Youth Development Camp at Vaughan Park in November 2019. You can read all about the amazing weekend in this edition of CHAT 21.

World Down Syndrome Day It is time to start planning how you will celebrate World Down Syndrome Day on the 21st March 2020. The NZDSA will be promoting two

a little guide from parents who have gone before you

Thank you to all the wonderful contributors to Little One

campaigns to create awareness, to promote Down syndrome and to fundraise in our communities. •

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The first campaign is T4T (Tea for Trisomy 21) the NZDSA’s signature event to celebrate World Down Syndrome Day (WDSD). We encourage people in our community to host a Tea party in their homes, work place, recreation and leisure spaces to mark World Down Syndrome Day. The second campaign is LOTS OF SOCKS, which is an opportunity to wear socks in all shapes, sizes and colours which will start conversations about WDSD, create awareness of Down syndrome and raise funds for the NZDSA so that we can continue to provide support and information to people with Down syndrome and their family and whānau.

We will once again be using Everyday Hero to create online fundraising events. If you would like to know more about hosting a T4T party or LOTS OF SOCKS please email Jess (hello@nzdsa.org. nz) so that we can forward you an information pack.

Summer break We have already had a few hints of summer weather which heralds the approaching holiday

Little One booklet cover

season, so whether you’re staying home or going away, we hope that you have a wonderful time. We would like to publish your favourite summer photographs in Enews and Chat 21, so please send your photographs to Jess at (hello@nzdsa. org.nz). When you read this edition of CHAT 21, the team at the NZDSA national office will be consolidating work for 2019, planning events for 2020 and completing tasks so that we can close the NZDSA office during the summer school holidays. The NZDSA national office will be closed from the 18th December 2019 to the 3rd February 2020. The NZDSA National Committee has already scheduled a number of events for 2020 and is looking forward to opportunities to connect with you in your community. We will be sharing the events via Enews, so if haven’t subscribed, please contact Jess at (hello@nzdsa.org.nz) so that you can receive regular Enews updates. The team at National office and the NZDSA National Committee would like to wish you and your family a blessed Christmas, special time with your family over the summer break and a wonderful 2020. Hei konei rā Zandra

SPECIAL OLYMPICS ATHLETES CARVE UP THE SLOPES Congratulations to all the Special Olympics amazing athletes who competed at the National Winter Games at Cardrona. Although the weather wasn’t the best for the Opening Ceremony, the Games kicked off with a bang. One of the highlights was the flame being carried down the mountain by Wellington athlete Michael Holdsworth, who has attended every National Winter Games since the event began in 1995. After that, the weather turned to sunshine and the Games were in full swing, with everyone giving it their all. Athletes competed in Slalom, Giant Slalom and Super G. The games were a great success for athletes, coaches and staff. We had perfect racing conditions and it was a delight to see the smiles on all the athletes and coaches faces at the end of the day. Achievements ranged from Amos Van Asch hitting every gate for the first time on his final run down the mountain to Jaimee Caffell being the only female athlete in snowboarding to be closely beaten in each discipline by Kaa Dekker.

Special Olympics New Zealand Events Director Asti Farrell said one of the highlights was seeing a number of the athletes moving from the Intermediate competition to Advanced. “It was also great to see some young athletes coming through, including a few 14 and 16 year olds. The whole experience was fantastic for these athletes, from the Opening Ceremony through to the disco” said Asti. “This year we also introduced the inaugural coaches race that was run at the end of the competition and was a lot of fun! He also emphasised the event was only possible thanks to the wondeful support all of the volunteers, and to Cardrona Alpine Resort, Pelorus Trust, Southern Trust, Skinny Fizz and Blackland PR, for all of their effort and support. Full results of the National Winter Games are available on the Special Olympics website a t h t t p s : //w w w. s p e c i a l o l y m p i c s . o r g . n z / competitions

Cosmo Adams

Craig Torrence

INCLUSION, EVEN IN SPECIAL EDUCATION! By Margi Leech

I hope your child has had a great year this year at school. In this article, MARGI LEECH sets out some things for you to consider how it could be improved, made better or completely changed. Angela Gold and Melanie Simons are both specialist teachers and mothers of children with Down syndrome who also provided their advice for this article. 30

Our children are born into a family. We include them in everything we do and make allowances for their challenges, abilities. We support them to know they are loved. It’s no different for childcare, early childhood and school. Or maybe that’s where the challenges are. Inclusion in the Junior School is usually just fine, it when our children get older that it can come unstuck. The gaps widen in social areas too. But there are some great tools including assistive technology out there to help. See the list at the end. Schools usually assign a Teacher Aide or Learning Assistant to help out in Maths and Literacy time. The help varies from teacher to teacher and from school to school. The success very much depends on the training and values of the school. We know from international studies that Teacher Aides can be a help AND a hindrance. I don’t want to read on any toes or upset any fantastic teacher aides. For those who are fabulous, use this as a personal check list. Invite others to reflect on your practice too. It’s called peer review. The Ministry of Education has a website designed to support all educators. www.tki.org.nz Parents, read this too to build a deeper understanding of what’s available. Also look on www.education. govt.nz and Special Education where there are many useful links. Learning happens alongside peers MORE than with a teacher aide at every age – even to Year 13! But teachers know about peer tutoring, cooperative learning, buddy reading and writing. A teacher designs a lesson and should include how to adapt the same lesson to require less reading and writing, instead using pictures, symbols, assistive technology. Teachers call this, ‘differentiation’. You can ask about how they are using these strategies to support not only the learning but developing relationships. It’s good to write in the IEP plan the principles, strategies and tools of differentiation. As our children get older, don’t get sucked into the mantra- We only teach life skills and Key Competencies now. It’s a cop out. Our children deserve being taught educational skills all of their lives. I hear of many older people going to university, so why not keep the learning going for our kids. Research bears this up too. Life skills education can happen at home mostly or when they are on their way out to go flatting. Parents consider getting specialist help outside

of school if you are seeing little or no progress. There is no training for teachers in special educations, dyslexia or dyscalculia unless they have taken a personal interest and completed extra training. Not all specialists are the right one for your child either. Make sure you are seeing enjoyment and learning. Attend the sessions too so that you can carry the learning on at home and connect to school. The teacher should see this as a wonderful opportunity for their learning and not be threatened. Attend the local DSA Education conferences and encourage the classroom teachers to attend, not just the SENCO. I have learned so much from the speakers and have taken their ideas and experience back to my school. Melanie writes: My son has a great programme. Most of it was instigated by me. After the Otago DSA conference when I learned about cued articulation, I introduced it to the school. The Ministry SLT’s are now supporting it too. Tips for Parent and caregivers: • Visit the school about every month or so to stay on top of what is happening. The communication notebook is too hard to comment in for many teachers in such busy classrooms. I have found the Seesaw app is great for quick feedback. You can talk with your child about the photos when they get home too. It’s lot better than, ”How was your day?” No response. • Teachers often change, specialist in schools change, teacher aides change. Stay in touch with the school. • Know what your child is capable of. I had to take a video of Emily reading at a higher level to convince a teacher that Emily belonged in a much higher group than she was in. It is best practice for our children to be in higher group than what they are capable of because they learn so much from others. They also need readers to enjoy that are at a lower level to build confidence and fluency. • Meet with your specialist teachers. They often visit the school once a week or fortnight. It’s hard for them to get the details of everyday life at school. They often come as outreach

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teachers from a special school. Mostly, they will have had training in teaching children with learning difficulties and can help teachers with differentiating the programme and lessons. Find out how the school uses them in support. Some schools use them as a break for the teacher aide and teacher, so there is no ongoing value. The best schools use them as ‘teacher training’ opportunities fo r t h e te a c h e r, a i d e s a n d o t h e r students. Everyone loves this approach the most. You are the consistent person through this journey. Learn yourselves about your child, their strengths and where they need your support.

Often seen in NZ and internationally: • Exclusion happening in all years in the playground. • There are lots of kids still eating and missing out on fun and games too, through most of morning break and lunch time. • Teacher aides running over the fields to ‘catch’ a child. • Teacher aides playing games with the child instead of supporting the child to play with their friends. • Exclusion increasing as the years increase. Children are often outside of the classroom, sitting at the back or side. • Assistive technology mostly being used by the teacher aide Tips for educators. Use these points as a checklist if you like: • Be open to parent input. See them as a great resource for the student. They have a passion for their child and usually more time to do the research and try it out at home before introducing it to your staff. It also takes a lot of courage for them to do this. I have learned so much as a teacher through teaching my daughter! • Attend the DSA education conferences. They are set up for you! What you learn will make you a much better teacher. I know this from personal experience.

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Parents make great TA’s! Bronwyn Rydon has been a teacher aide for so many years. She loves her students and is able to bring so much of what she has learned through teaching her daughter to supporting other students. It’s very rewarding being a TA. I have done this too. Look at the Ministry website – Universal Design for Learning – for all students. It’s brilliant. The ministry runs courses on this.

Tips for everyone: • Enjoy these years. • Not everyone is the same. If you have taught one child with Down syndrome, the next one is very likely to be very different. • Ask for help others’ opinions. Not all of us specialists in every area • Be willing to learn Websites for further inspiration: There are some great insights on the NZ education website – www.tki.org.nz • Scroll down on the home page to Learning Support • At t h e to p o f t h e p a g e c l i c k o n Communities. Once there select Special Education • Inclusive Education • IEP Online (Individual Education Plans) • SE Online (Special Education) • Through different eyes • Tilting the Seesaw for Teams (Autism NZ) Other countries too have great resources. An internet search: • Queensland – Down Syndrome • Alberta Canada Inclusive education • Down Syndrome UK • Down syndrome USA • Down syndrome Ireland Enjoy the holiday time together being refreshed for 2020!

WORLD TOUR By Edward Bradley

Edward Bradley is the founder of D2020 World Project, which wants to raise awareness about Down syndrome around the world. In this story he explains why he is travelling to New Zealand and seven other countries to connect organisations involved in helping people with Down syndrome.

The D2020 World Project was created when one day I decided to quit my job after having had worked in luxury tourism for almost two years. I wanted to organise a round-the-world trip but however wanted this adventure to mean something more to me. I wanted to build a project that would help others and actually feel directly connected to that special cause. My older sister, who just turned 29, has Down syndrome and every time I travel she asks me if there are people with Down syndrome in the countries I’ve been to and what languages they speak. That is how the idea of this project came to my mind. My sister and I are really close and I have seen her grow up in an environment where she was always “one of us”. We went to the same primary school and still have many friends in common. She is now an independent young lady who lives in her own flat and goes to work by herself taking public transport. She was also brought up in a bilingual environment and has always spoken fluent English and French. Growing up with a sister with Down syndrome, I used to be quite discreet about it until the

day I realised that I was actually very lucky. As a kid, you do not really understand what Down syndrome is and sometimes at school it was hard to explain it to my friends, so I would just say she was different. Today I think as a brother, that it is a privilege and without knowing it, my sister has taught me many values and ways of seeing life. People with Down syndrome have so much love to give and so much energy to share that I think that it is a shame for them to not be more included in our societies around the world. So starting from January 2020 I will be visiting at least 8 countries in 90 days hoping to meet foundations, families, and other people who would like to be included in the D2020 World Project adventure. I would also love to take the time to speak to parents, brothers and sisters, professionals, employers, and learn about what Down syndrome means to them. How would we like to raise awareness about the capabilities of people with Down Syndrome? By using social media and creating a more interactive content for people to follow us daily, even people who do not know anybody with Down Syndrome. I would love this project to reach as many people as possible as I think this can be an educational project that could also be followed by schools around the world. Our goal is to show what these people are really capable of and what they bring to our everyday life. We want to project another, more accessible, image of people with Down syndrome in various countries, going from big cities to small islands, and connect them to others around the planet. Finally, anybody can join the D2020 World Project and please do not hesitate to contact us by email at ebradley@d2020worldproject.com or on instagram at @d2020worldproject to share any ideas, contacts, or if you would like to meet us during our trip! It would be a real pleasure and I truly believe that this can end up being a beautiful project!

BIRD'S EYE VIEW By Sue Robins

Canadian author SUE ROBINS recently published a new book called Bird’s Eye View: Stories of a life lived in health care. Sue was unexpectedly immersed in health care as a mum when her third child was born with Down syndrome in 200. In 2017, Sue became a patient when she was diagnosed with breast cancer. This book was written with health professionals in mind to encourage more humanity in health care by sharing stories about how it feels to be the mom of a child with Down syndrome and a cancer patient. Sue had kindly agreed for Chat 21 to share the following chapter talking about her son Aaron, called The Wonder. My youngest son is now 16 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ”Down syndrome”. Years have passed, the intense grief has faded. I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson

Sue Robins

gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck. We must honour the healing that comes from the dark times. For many months, I was mourning the loss of the so-called perfect baby. Looking back, there were many factors that helped me move forward to see the light again. My personality is good for people – for love – like my family. – Aaron Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. His two older siblings were 6 and 9 when he was first born. His sister Ella, who is now 23 and a pediatric nurse, says that Aaron taught her at an early age to be more patient and inclusive, accepting and non-judgemental. Aaron’s older brother Isaac shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And Mike, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. For example, Aaron loves swimming competitively, watching hockey and eating hamburgers just like his dad. The majority of children’s genes come from their mom and dad – it is only the one chromosome that is extra. Our kids are more like us than they are like Down syndrome. Ella once said to me, ”I wish other people could see Aaron as I see him.” This is why it is so

important for all people who work with children with disabilities – health care professionals, therapists, educators – to take the time to understand the actual reality of families. Often people have stereotypes of disabilities stuck in their head, just as I had when Aaron was first born. We all must confront our own ableism if we are to create inclusive environments where everybody belongs. Aaron has taught me that different is not bad; it is just different. Much of my own suffering in life comes from pining for a different life. I had to move through acceptance to celebration of Aaron in my own time. Yes, some things are harder, but the important things require hard work. I’ve also discovered that I can do hard things. Families need to know that they and their child can – and will – live a good and rich life. Professionals can help by sharing authentic stories of other families, reminding them to take care of themselves and connecting families up with other families. But the most crucial thing that people can do when working with families of disabled children is to be aware of their own personal values about disability. It is their responsibility to do their research and check those values against the actual lived experience of families and children. For it is love, patience and faith that will help guide a families’ way. Health professionals in particular - are in a unique position to help families begin their child’s life as a celebration and not a tragedy.

IHC Library

DIFFERENT STORIES OF DOWN SYNDROME, 50 YEARS APART

We are pleased to let you know about a few new books we have on Down syndrome. “Shut away” and “A world without Martha” are both memoirs written by siblings of babies born in Ontario in the 50s who are sent to live in institutions. In contrast “A positive result”, also a memoir but set 50 years later in 2000, tells a very different story.

Shut away: when Down syndrome was a life sentence by Catherine McKercher (2019) "How many brothers and sisters do you have?" It was one of the first questions kids asked each other when Catherine McKercher was a child. She never knew how to answer it. Three of the McKercher children lived at home. The fourth, her youngest brother, Bill, did not. Bill was born with Down syndrome. When he was two and a half, his parents took him to the Ontario Hospital School in Smiths Falls and left him there. Like thousands of other families, they exiled a child with disabilities from home, family, and community. The rupture in her family always troubled McKercher. Following Bill's death in 1995, and after the sprawling institution where he lived had closed, she applied for a copy of Bill's resident file. What she found shocked her…

A world without Martha; A Memoir of Sisters, Disability, and Difference by Victoria Freeman “Victoria Freeman wa s o n l y f o u r w h e n her parents followed medical advice and sent her sister away to a distant, overcrowded institution. Martha was not yet two, but in 1960s Ontario there was little community acceptance or support for raising children with intellectual disabilities at home. In this frank and moving memoir, Victoria describes growing up in a world that excluded and dehumanized her sister, and how society's insistence that only a "normal" life was worth living affected her sister, her family, and herself, until changing attitudes to disability and difference offered both sisters new possibilities for healing and self-discovery.” – BOOK JACKET

A positive result by Joanne Pasquale "One in a thousand babies born in the UK every year has an extra chromosome that means they have Down syndrome. This is one b oy ’ s s t o r y a s s e e n through his mother ’s eyes. When Jo and Cliff were told their child had Down syndrome at the 15th week of pregnancy they had little idea of what this meant. Determined to provide the best for him, Jo found Jamie could teach her as much as she could teach him. This is her story of how it feels living with a child who is ‘different’. With humour, determination and sadness, Jo gives the reader an insight into a world where everyday tasks can be a struggle and simple things mean a great deal. She reveals how that extra chromosome may make Jamie different, but he is just the same as other children – given half the chance." - BOOK JACKET

NZDSA notices

NUMICON KITS Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2020. N u m i c o n i s a m u l t i - s e n s o r y, s t r u c t u r e d mat hs programme. If you would like to know more about Numicon the website is http://www.numicon.co.nz/

2020 NATIONAL ACHIEVEMENT AWARDS The NZDSA is calling for nominations for the NZDSA 2020 National Achievement Awards. These awards recognise the accomplishments of people with Down syndrome during 2019. If you would like to know how to nominate a p e r s o n p l e a s e e m a i l L i n d a te Ka a t a t nzdsai@xtra.co.nz.

If you would like to loan a kit please contact Linda te Kaat for more information at nzdsai@xtra.co.nz or on 0800 693 725 press 2.

Rose Award

Thanks

You will note that no one was nominated for a Rose Award in this edition of CHAT 21. So, I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21. The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email nzdsi@extra.co.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Top 10 Maths Applications The NZDSA would like to know your favourite apps for maths. Please email your list to Jess at hello@nzdsa.org.nz

Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • Joyce Fisher Charitable Trust • Lottery Minister’s Discretionary Fund • NZ Lottery Grants Board • Holdsworth Charitable Trust • Thomas George Maccarthy Trust • Pub Charity • Southern Stars • Enable NZ - Mana Whaikaha • COGS Christchurch • COGS Hamilton • COGS Manukau • COGS Manawatū/Horowhenua • COGS Otago • COGS Whangārei • COGS North Shore • COGS Wellington • COGS Southland

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. Please check it out at facebook.com/NZDSA

NZDSA Committee

Contact Directory Kim Porthouse

Bev Smith

Diane Burnett

President Wellington & Wairarapa 021 297 0298 president@nzdsa.org.nz

Zone 1 Representative Northland 0800 693 724 press 3 northland@nzdsa.org.nz

Zone 1 Representative Auckland 0800 693 724 press 3 auckland@nzdsa.org.nz

Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawkes Bay 0800 693 724 press 3 zone3@nzdsa.org.nz

Kim Porthouse

Gwen Matchitt Vice President Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 press 3 zone2@nzdsa.org.nz

Angelique van der Velden

Zone 6 Representative All areas below Ashburton 0800 693 724 press 3 zone6@nzdsa.org.nz

Shelley Waters

Zandra Vaccarino

Linda te Kaat

Coen Lammers

National Executive Officer 0800 693 724 ext. 1 neo@nzdsa.org.nz

National Administrator 0800 693 724 ext. 2 nzdsai@xtra.co.nz

CHAT 21 Editor 027 730 239 editor@nzdsa.org.nz

NZDSA Staff

Zone 5 Representative Ashburton & all areas above 021 232 5598 zone5@nzdsa.org.nz

Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Regional Liaison Officers

Averill Glew

Auckland Community Liaison Officer 0800 693 724 press 3 clo@adsa.org.nz

Treasurer treasurer@nzdsa.org.nz

New Zealand Down Syndrome Association PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Jess Waters Social Media and Information Officer 021 032 8539 hello@nzdsa.org.nz

Donna Higgs-Herrick

Sandra Slattery

Canterbury Community Liaison Officer 0800 693 724 press 3 cdsainc@gmail.com

Taranaki Community Liaison Officer 0800 693 724 press 3 taranakidownsyndrome@gmail.com

NZDSA Membership Membership charges are as follows: $30 one year Financial membership fee, $50 one year Affiliate membership fee, $15 one year Self-advocacy membership fee. To obtain full details and a membership form please either email – nzdsai@ xtra.co.nz or telephone 0800 693 724 ext 2.

Database Updates The NZDSA would like to update their database. If your details need updating please contact us either by email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

Zone 4 Representative Wellington & Wairarapa 0800 693 724 press 3 zone4@nzdsa.org.nz

Donations The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you are able to make a donation please either send a cheque to us at P O Box 4142, Shortland St, Auckland, 1140 or direct credit to ASB 123073 0090784 00 using your surname as reference. If you require a receipt please email us to let us know you have made a donation via internet banking by telephoning 0800 693 724 extension 2 or emailing nzdsai@ xtra.co.nz. If sending us a cheque please include your address so a receipt can be posted to you.

Our people

Guy and Yma van Egmond

Year 11 student Guy van Egmond wrote this poem to explain the special place his sister Yma holds in his heart.

21 Ultrasounds: so superficial, showed us what you were not who you are. And that’s what so damn special. You were born a child, not a condition, born a smile, not a set of symptoms, born a tantrum, not a trisomy. You were born a sister, not a Syndrome. You’re a: life-changer, smile-exchanger, don’t you ever try to change her. Dancer, an entertainer, no mould can contain her, you can’t not love her, it's a no-brainer. Teacher; teaching us all patience, reminding us of the basics: Love, Affection and Joy. But, most of all, through and through, You’re my sister. I love you.

Me and my pet

CLEO AND HER CAT LENNY

JESSICA JELLEY 11, WITH SHADOW

JACK AND HIS DOG TED