CHAT 21
ISSUE 88, Summer 2022 ISSN 2744-4635
A journal about & for the New Zealand Down syndrome community.
Our People
Cover image: Iris Carlyle enjoying a spot of reading in her NZDSA hangpod Top: Bella Lammers recovering from the West Coast gale at Wharariki Beach Centre left: Brendon Porthouse enjoying the Halswell Miniture Railway whilst holidaying in Christchurch Centre right: Gabi Silvavillacorta on a holiday bush walk Bottom left: Petra Jaquiery loving the backyard pool Bottom right: Oscar Airoldi’s first flight with Nan Nan and “Mummy” flying the plane
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Contents Attitude Awards 2021 Virtual conference celebrates anniversary in style Key webinars still available on the NZDSA website What is the Ministry for Disabled People? From our new editor… Poppy movie selected for the Slamdance Festival in Utah Down Write Brilliant NEO Notes Me & my job Announcing a new poetry section of CHAT21
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2021 – a year of connection Pae Ora submission – hoping for healthier futures Champion Centre One year until the Special Olympics National Summer Games - again! Finding the Upsides of 2021 IHC Resources NZ Down Syndrome Association honours Dame Patsy as part of 40th anniversary Contact Directory NZDSA Notices Our People
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From the Ex-Editor It’s hard to believe that almost four years have flown past since the unexpected SOS phone call from the NZDSA to see if I could step in to rescue the upcoming edition of CHAT 21 when the previous editor suddenly moved into a new role. With an already pretty hectic schedule, I agreed to help out for one month, but never anticipated that I’d still be here 16 editions later. As a long-time journalist, I had been reading CHAT 21 with a different lens and always wondered what more it could be. The SOS call in early 2018 became an opportunity to bring a more professional approach (and deadlines!) to the journal, and the amazing feedback from our readers encouraged me to stay on for a few more. And then a few more. We started to introduce new sections to represent all age-groups, a variety of issues, and opportunities for the youngsters who are too young or unable to write a story to be represented in our photo pages. With increasing other workloads though, it was not always possible to give CHAT 21 the attention it deserves, so I came to the difficult decision to hand over the baton to new blood with new ideas and new energy, and I am convinced Sarah Paterson-Hamlin ticks all those boxes.
After putting my heart and soul into capturing the 40-year history of the NZDSA in the recent anniversary edition, I decided that was a great way to sign off. I have been working closely with Sarah on this issue to ensure she can hit the ground running and keep up the momentum we have created. I want to thank all those hundreds of people with Down syndrome, parents, friends, whānau, professionals, and other experts who have shared their stories and their photos so generously to enable us to produce CHAT 21. Any editor is only as good as the designers who put the words into an attractive document, so special thanks to designer Dan te Kaat and his speedy sidekick Taylor McMillan for being just as passionate as me about giving our readers a top-class product. I also want to thank Zandra Vaccarino and board for putting up with my “grumpy editor” approach and hassling them over deadlines. I often say the Down syndrome community is a bit like Hotel California, “You can check out, but you can never leave”, so I may have stepped down, but still hope to contribute where I can. Kind regards Coen Lammers
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Attitude Awards 2021 By Sarah Paterson-Hamlin
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The Attitude Awards are a highlight of the year in Aotearoa, and despite a different look, 2021 was no different. The team at Attitude did an amazing job converting the ceremony to a TV special at the last minute when COVID scuppered plans for the awards ceremony. NZDSA member and self-advocate, Carlos Biggemann, took home the Creative Award, with five other members of the Down syndrome community also nominated – a huge thrill to see those familiar names up in lights! The Supreme Award winner was the talented Olivia Shivas, whose podcast: “What’s Wrong With You?” takes an insightful and humorous look at disability in Aotearoa. We certainly missed being able to celebrate in person, but Attitude sure
can put on a great TV show, and anyone in any part of the country was able to join in on December 18th for the virtual awards ceremony. Simon Dallow was still there, talented Kiwis with disabilities still performed, and the deserving nominees and winners were showcased to the nation. If you missed it, don’t worry, you can still catch it on demand! We asked Dan Buckingham from Attitude how difficult it was to make the call to cancel the live awards event. “ E x t r e m e l y d i f f i c u l t ! H o w e v e r, disappointing as it is, we feel it has proven to be the right call. With a guest list that involves a number of immunocomprised people, we weren’t willing to put the awards ahead of people who would be in danger if exposed to the virus. The uncertainty of
COVID-19 in the community has toppled many events, but we’re pleased that we could pivot and create a great TV special that will still have all the best parts of the live event – winners, performances, guests, and an overall feeling of hope after a very hard year.” Naturally, the team are already putting in place some exciting plans for the 2022 event. “This journey we’ve been on in 2021 has actually opened up some opportunities for how we may celebrate all of these great success stories in the future. We can’t give much away yet, but we’ll have some exciting surprises in store as we return to the live event.” The Down syndrome community were very well represented this year, with five
nominees having Down syndrome and another, Sarah Ferens, a much-loved member of the community. They were nominated for diverse achievements, and included a poet/photographer, an entrepreneur, an actor, a YouTuber, and an athlete. D a n ex p re ss e d h i s e n t h u s i a s m fo r the talented group representing the community. “Luka Willems, Carlos Biggemann, Lily Harper, Alfie Linn, and Bradley Lewis have all excelled in their fields, from sport to acting, photography to dog treat-making! Sarah Ferens is an amazing advocate for her sister and the Down syndrome community, showing that they’re so much more than just their disability. Along with all of the finalists across the categories,
Olivia Shivas Supreme Award Winner
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Nominees Top left: Sarah Ferens Centre: Bradley Lewis Top right: Luka Willems Bottom left: Lily Harper Bottom right: Alfie Linn
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they display the values that Attitude admire and aim to shine a light on. “It’s our hope that by sharing the stories of Kiwis with Down syndrome living regular lives through the Attitude television series, the Attitude Awards, AttitudeLive.com, and the soon to be released TV series, Down for Love, we are doing a small part in helping more people around Aotearoa understand that having Down syndrome doesn’t stop you from living a full life.” The nominees, and many others around the country, are breaking barriers for people with Down syndrome and other
disabilities every day. Unfortunately, there are still many areas where unnecessary obstacles are all too commonplace. The Attitude Awards are part of the movement to change this. Dan explains the role of one of the award categories in this process. “The Attitude ACC Employer Award is one Award we push for nominations as far and wide as we can. One of the underlying themes of The Attitude Awards is to try and shift the dial on the statistics of people with disabilities in employment. Across the board with the disability sector we
Award winner want to showcase more stories of disabled people in work… it would be great to specifically tell stories of people who live with an intellectual disability excelling in employment.” Take note for this year, employers and employees alike! “We’re big believers in that telling many stories about many people is part of the path to social change,” Dan says. “Those who are finalists and winners have themselves made a difference by simply putting themselves forward for a nomination. We hope the people
we showcase this year will give a few more people a nudge next year to get a nomination in so we can tell their story too. “It’s also a great feeling to share the stories of our finalists with the people of Aotearoa – our finalists do amazing mahi and we want to shed as much light on them as possible.” Congratulations to all the nominees and winners from the 2021 Awards, and to the team who put it all together. We can’t wait to see what you do next!
Above: Carlos Biggemann
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Virtual conference celebrates anniversary in style By Coen Lammers
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The NZDSA has completed an incredible World Down Syndrome Awareness Month in which it celebrated its 40th anniversary by hosting the largest Virtual Down Syndrome Conference this country has ever seen. “The past month has been a rollercoaster for everyone involved and we want to thank our speakers from all over the world, the hundreds of families who participated, and the NZDSA staff involved in organising this event which has set new standards,” says NZDSA National Executive Officer Zandra Vaccarino. The NZDSA in its 40 years has organised numerous large scale events for its members, but the power of modern video technology has enabled the association to reach more people all over the country than ever before to share an incredible variety of experts and information. D u r i n g t h e p a s t m o n t h , ove r 70 0 individuals and households joined one or more of the 22 events and presentations. The 34 speakers hosted a staggering 2,748 minutes of webinars, Q&A sessions, and social gatherings.
Vaccarino says a live conference with 34 speakers, 700 guests, and nearly 50 hours of presentations would have been nearly impossible to pull off, but COVID-19 lockdowns have taught us new ways of communicating, creating endless new opportunities. The NZDSA was keen to celebrate its 40th anniversary in style, and Vaccarino hopes the Virtual Conference has demonstrated what the association has to offer. “We really want to encourage anyone who is yet to become an NZDSA member to register as a member so that we can offer our support and our resources and represent more families when we advocate for our community,” says Vaccarino. Unlike most conferences, the NZDSA decided not to charge for any of the webinars, to give as many families access as possible. “We want to keep offering these types of events, but as we are not funded by Government, we fully rely on donations to keep our association going. So if you got value out of your session, please make a one-off donation on our website.”
Minister Carmel Sepuloni was one of the many guests appearing on the Virtual Down Syndrome Conference. Key webinars still available on the NZDSA website
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Key webinars still available on the NZDSA website
If you missed out on some of the sessions of the virtual conference, you can still watch some of the key webinars on the NZDSA website. Go to the resources section and you can watch the following seminars in your own time. Just make sure you register as a member, which is free, to get access to all our resources. The webinars that were recorded were: Relationships – Theories and Practicalities This session deals with a variety of issues that face everyone trying to create new relationships, but may be particularly challenging for someone with Down syndrome. • What are relationships? • Relationships as an adult • Knowing what I want in a relationship • Self-regulation and relationships • Q&A Presenter Dave Hicks: Dave Hicks has been an educator in the field of neurodiverse learners for 20 years. He has worked as a teacher in several specialist settings including schools in Melbourne, Australia; an International School in Jakarta, Indonesia; and schools in Auckland, New Zealand; and currently lectures in and manages programs for young adults with neurodiversity at Unitec, Auckland. He is also a father of a teenager diagnosed as being on the Autistic Spectrum and is passionate about accessible education for all learners, empowerment of learners to make better life choices and social justice and equality for people with diverse needs.
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Supported Decision Making – a Human Right Everyone has the right to make decisions, and everyone has the right to access support to make those decisions. This workshop will help participants to gain a greater understanding of the national and international legal context of Supported Decision Making, who may require decision making support, and the key principles and strategies for extending decision making support. It will also explore the concepts of capacity, will and preference, and Safeguarding. Presenter Erika Butters: Erika works as the Director of The Personal Advocacy and Safeguarding Adults Trust. She is passionate that the rights, well-being and interests of all New Zealanders are protected and promoted. Over the last several years her work has focused on ensuring independent advocacy and support for decision making is available to all disabled people in New Zealand. Erika works and lives in Wellington.
Early literacy skills for children with Down syndrome - Families making a difference Learning to read has huge benefits for children with Down syndrome. Not only do they reap the same benefits their peers do, but they also develop vocabulary, grammar, auditory memory skills and clearer speech through learning to read. Fiona will share tips for whānau, based on the latest research, about how whānau can set their child up for literacy success. Presenter: Fiona Kenworthy: Fiona Kenworthy is the clinical director of Small Talk Therapy. Fiona has been practising since 1999. She has worked in child development, the Ministry of Education, special schools, the University of Auckland SLT MSc program and now in private practice. She developed a specialist interest in communication skills in children with Down syndrome in 2010 when she trained in the Johansson Program. Fiona is the most subscribed therapist with the UpsideDowns Education Trust. The Golden Years: Ageing and Down syndrome An introduction to the needs of the older person with Down syndrome and how this may affect their health and wellbeing alongside the supports they may need. This session offers some background, offers insights and information, and d e m o n s t ra t e s b e s t p ra c t i c e w h e n supporting people with Down syndrome. Presenter Geraldine Whatnell: Geraldine (Dina) Whatnell is the Nurse Practitioner Mental Health and Addictions Service, Palmerston North Hospital. Geraldine brings with her nearly forty years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/ or Autism Spectrum Disorder) and mental illness; alongside this, Geraldine has a wealth of personal lived experience – her younger brother Mark having a diagnosis of Down syndrome and now dementia.
Individual Education Plan – The capabilities approach Individual Education Plan – The capabilities approach to a structured plan to explain, recognise, and deliver on all learning opportunities to fulfill goals and achievement for children and young people with learning disability and Down syndrome. Presenter: Dr Maree Kirk: Dr Maree Kirk is the Developer and National Director of Supporting Teaching Practice for students with learning disability and Down syndrome (STPDS), a national collaborative programme that has reached over 100 schools in New Zealand, thanks to Lotteries, COGS, TECT, and local community Trusts. M a k i n g v i s i o n s wo r k - S o c i a l s k i l l development for identity across the lifespan Making visions work – There are several influencing factors that contribute to wellbeing for children and young people w i t h l e a r n i n g d i s a b i l i t y a n d D ow n syndrome. When practical strategies to boost social skill development are used by adults from an early age and / or are ongoing at home, school and in the community children and young people increase their sense of belonging, achievement, and positive social disability identity across the lifespan. Presenter: Dr Maree Kirk (see above)
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What is the Ministry for Disabled People? By Sarah Paterson-Hamlin
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Cabinet Ministers Sepuloni and Little in October announced a game-changer for disabled people and their whānau in New Zealand. Following years of pilot programmes and tentative steps towards embracing the Enabling Good Lives principles, the new Ministry will be guided by this philosophy. “Putting the voice of disabled people and their families at the heart of decision making is an approach that works, as we’ve seen with the Enabling Good Lives pilots in Christchurch, Waikato and MidCentral regions. “Enabling Good Lives empowers disabled people and their families to have more control and choice about the support they receive and that’s why we’ve committed to the national roll-out of Enabling Good Lives,” Andrew Little said. What are the Enabling Good Lives Principles? Self-determination Disabled people are in control of their lives. Beginning early Invest early in families and whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available. Person-centred Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes. Ordinary life outcomes Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation - like others at similar stages of life.
Mainstream first Disabled people are supported to access mainstream services before specialist disability services. Mana enhancing The abilities and contributions of disabled people and their families are recognised and respected. Easy to use Disabled people have supports that are simple to use and flexible. Relationship building Supports build and strengthen relationships between disabled people, their whānau and community. How will the new Ministry work? There is still a lot to be worked out and put through Parliament before the new Ministry becomes a reality – including what its final name will be – but we do know a few things already. We know it will be hosted by the Ministry for Social Development, so you can expect supports such as the Child Disability Allowance to be transferred over to the new Ministry with relative ease. We also know the new Ministry is charged with improving outcomes for disabled New Zealanders by moving away from fragmented and confusing support services. One big change we know about so far, is that this Ministry will be centralising the role of Needs Assessment and Service Coordination Services (NASCs). Hopefully, this will be a positive change that leads to a less confusing and inequitable model than the status quo. We also know that the Ministry will be supported by a new Accessibility G ove r n a n ce B o a rd a n d a p i e ce o f legislation called The Accessibility for New Zealanders Bill, which are aimed at making Aotearoa more accessible.
Will it improve the outlook for people with Down syndrome? There is certainly cause for cautious optimism. Programmes like Mana Whaikaha have seen some excellent results for people with Down syndrome and their whānau, and it is on the same Enabling Good Lives principles that these changes are based. The more of a voice we have in the next part of the process, the better the outcome will be for our community. It is important that we continue to monitor progress, submit on legislation when the time comes, and keep our eyes peeled for opportunities to be part of the consultation process. Carmel Sepuloni has said that ‘the disabled community’s voices will be embedded at all levels of decision-making, from the formation and running of the Ministry, to the development of accessibility legislation.” It is crucial that we hold the Minster and her colleagues to these words, and ensure that people with Down syndrome are included every step of the way. So stay tuned for more news from NZDSA about what we’re doing to make our voices heard in this next part of the process, and don’t be afraid to let us and the wider community know of any opportunities you come across to be involved!
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From our new editor…
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Kia ora koutou, Some of you will already know me as Sarah-FromUpsideDowns, an epithet I’ve been proud to bear since 2017. I am very happy to be introducing myself today as still Sarah-From-UpsideDowns, but now as Sarah-WhoEdits-Chat21 as well. When I first started working for UpsideDowns, I had hardly any experience when it came to families with Down syndrome. A fellow youth group member for a few months when I was 11, the little boy of a friend-ofa-friend in Glasgow, a respect for the oeuvre of Sarah Gordy, and that was about it! It wasn’t the most ordinary way to get a job either. I was new to motherhood and new to Auckland when I posted in the Mt Albert Community Facebook page advertising my tutoring skills (I was also new to Auckland rent!). I never did get any tutoring work, but my post was spotted by Hannah Reynolds, who was then trying to find a replacement for her position as the sole employee of the UpsideDowns Education Trust. We had a coffee, during which she showered my newborn with love and praise, and the rest, as they say, is history. The Down syndrome community were welcoming, inclusive, and patient with me, and for nearly five years now I have been privileged to work with and for Kiwi kids with Down syndrome. My time with UpsideDowns is certainly what has brought me to this role, but I hope it won’t be the only aspect of my experience that will prove useful. Before coming to Auckland, I spent three years in the wonderful city of Glasgow, Scotland, where I completed a PhD in Scottish Literature (it’s a thing!). My thesis topic was on the relationship between Scottish independence and Scottish contemporary literature. So if you want to know how JK Rowling re-colonises Ireland in the Harry Potter series, how Mary Queen of Scots getting her head chopped off was important to Zimbabwe in the 1980s,
or why a circular poem in Bannockburn might save us from the climate crisis, then I will very happily fill you in. It was also during this time that I co-edited my first published book with a friend and colleague, Katie Ailes, also on Scottish political poetry – what else? The themes might not appear directly relevant, but I hope that the skills in research, writing to a deadline, and a healthy respect for the Oxford comma that I gained there will come in handy. The Glasgow weather was more my speed than the climate here in Auckland, as I lived my first 23 years in Dunedin, Otago, aka the Best City in the Universe. Dunedin is where I gained my first three tertiary qualifications – a BA(Hons) and a Masters in English Literature, and a Diploma in French. During the six years I spent studying, I also worked part-time at the Otago Museum. It was a brilliant student job to have, involving everything from feeding tarantulas to taking cruise ship tours. It’s also where I met my nowhusband, in the heady romance of the Da Vinci Machines Staff Familiarisation Tour. I was also heavily involved in the United Nations Youth Association (UN Youth NZ), attending over 30 Model United Nations events, and becoming the National Vice President for Relations (I’m a very big nerd). The new-born who met Hannah is now about to start school, and has been joined by a little brother who is now two. Both
of them have bisomy 21, i.e. they do not have Down syndrome, which is why I have always been extra appreciative of the welcome we’ve received from this community. We live in Avondale with our cat, Mrs Dalloway. One constant throughout this, has been my love of writing, and of poetry in particular. So you can expect to see a bit more of that during my tenure (see page 25). I also hope that in my time here, I am able to continue the excellent work from Coen and other previous editors, which has made CHAT21 such a great resource and point of connection, not just for NZDSA members but for associated and interested groups that interact with the Down syndrome community, such as Special Olympics, Champion Centre, and IHC. Some of my aspirations in this role are to continue to grow and develop these connection points, to introduce more and more people to all the wonderful things Kiwis with Down syndrome are doing, and that each issue presents our readers with something they’d never heard about before. I would like to say a very big thank you to NZDSA, and especially to Zandra and Coen for their support and encouragement, and to the many, many members who have made me feel welcome in each of my roles. I am very excited to be starting this new position, and I look forward to learning more about this fantastic community!
Charlotte and Sarah at the Music and Fun Playgroup in Auckland
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Poppy movie selected for the Slamdance Festival in Utah
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Writer/director Linda Niccol is delighted to have her feature film Poppy selected for the 28th edition of Slamdance Film Festival in Park City, Utah in January and regrets that COVID travel restrictions will prevent her from donning her snow-boots and attending in person. Linda joins a range of illustrious Slamdance alumni who had early films selected by the festival including Bong Joon Ho (Parasite), Rian Johnson (Knives Out), Ari Aster (Midsommer), Lena Dunham (Girls), Jon M. Chu (Crazy Rich Asians) and Christopher Nolan (Dunkirk). S l a m d a n ce s e l f d e s c r i b e s a s a n t i algorithm. It’s a festival “by filmmakers for filmmakers” known for challenging the status quo, for discovering overlooked talent and unique voices. Poppy was selected from the over 1500 feature films submitted this year. It will feature in the small Unstoppable selection. Slamdance President and co-founder Peter Baxter identifies a focus this year on “storytellers who are changing the
media narrative and elevating the art of independent film”. The Slamdance Unstoppable section is programmed by alumni with visible and non-visible disabilities - an initiative “aiming to eliminate prejudices and gate-keeping that have historically kept disabilities from being represented in the entertainment industry”. Poppy is played by Libby Hunsdale. Her portrayal of a young woman with Down syndrome who takes control of her life in order to follow her dreams, has been singled out for praise – as has her onscreen chemistry with fellow performers Ari Boyland, Seb Hunter and Kali Kopae. Poppy was filmed in Kāpiti in 2020 (before and after lockdown) and released in New Zealand cinemas this year where it enjoyed a 14-week release and a 4-week slot in the top 10 at the box office. It is produced by Robin Laing and Alex Cole-Baker and funded by the New Zealand Film Commission’s 125 Fund (celebrating 125 years of women’s suffrage in NZ), by TVNZ, NZonAir, IHC Foundation and private philanthropic funders. Poppy has previously screened at three international film festivals – CinefestOz, Cinemagic Belfast, and LAFemme where it was a finalist for Best Feature.
Down Write Brilliant
When I met Jacinda Ardern By Talia Leach
I work at Rawene Hospital as a patient support assistant. One morning, I went to work and I met a beautiful young woman called Jacinda Ardern, she is New Zealand’s Prime Minister. Because of Covid 19 we did our elbow handshake to say hello. My boss, second in charge to the CEO, Christine, took a photograph of me and Jacinda. On the morning I went to work I did not know I was going to meet the Prime Minister. I helped give out the scones to Jacinda and her entourage. When I first met her, I was a little bit nervous to speak. I said hello to Jacinda, and Jacinda asked me to guess what her favourite scone was. I said “savoury cheese” and she laughed and said “how did you know that?”. I said it was my favourite too. All the people around us were taking photographs, videos, and filming to go on TV. Jacinda is on TV updating on the Covid 19, talking about opening the borders from Auckland also when the airports may open so we can look forward to travel.
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Down Write Brilliant
My message — live your dream By Luka Willems
It is exciting to swim as hard as you can and win a race. It is exciting when people see what you do and say ‘hey that’s great’ but it is also important to try to live your dreams. I am proud of my Zonta Sports award. I am excited to be a finalist in the Youth Attitude awards and I am super proud to win the Advocate for Inclusion and Diversity award for Canterbury Youth Awards. I like being called a Game Changer in 2021. But I am also happy that I try new things. I have gone to Outward Bound this year, I try to be fit and healthy, I swim and ski and I am learning to have the life I wish for. I am leaving school at 19 years to go to Project SEARCH where I will learn skills to help get a good job. I like my work experience at a garden centre and I have a girlfriend called Bella which means beautiful.
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I did a presentation for the Down Syndrome Virtual World Conference in Dubai called ‘YouTube - My Voice’. I showed everyone where New Zealand is and the wonderful things you can do in Āotearoa. I started with a karakia and showed short clips from my YouTube channel. Mum forgot about the time difference with NZ and Dubai so my presentation was in the middle of the night. So funny. One day I hope you can watch it too! I appreciate that people from all around the world look at my YouTube clips and that it might inspire someone to try new things. Please look up Luka Willems on YouTube and subscribe. It’s free and would make me happy. I want to live my dreams because dreams can last a lifetime. Ngā mihi from Luka Willems (Mum helped me write this, but the thoughts are my own)
ms
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NEO Notes
NEO Notes By Zandra Vaccarino
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Kia Ora, I don’t think any of us imagined that 2021 would be another year shaped by a global pandemic and that once again we would need to navigate how to live and work through 1pm news updates, mask wearing, lockdowns, restrictions, vaccine mandates, vaccine passports, the introduction of the traffic light system, the breaking news of Omicron, roll-out of vaccines for tamariki aged 5 to 11 from January 2022, and the shortening of the booster shot jab from six months to four months. Things are constantly changing, so we have all had to learn to adapt to constantly shifting plans and this has included the NZDSA. The NZDSA has spent 2021 with plans in flux and we had to pivot to find novel ways to continue to achieve the NZDSA’s strategic goals whilst meeting the needs of our community. We have embraced technology to connect our community and we have hosted many online meetings and social gatherings. These included the Big Connect to mark World Down Syndrome Day, STRIVE’s Supper Club, the Cocktail Hour, the Coffee
Club gatherings throughout September, and NZDSA’s Virtual Conference to mark Down Syndrome Awareness Month in October. The NZDSA’s Virtual Conference was an exceptional event, with 34 speakers over 2,748 minutes spread over 22 events. If you were not one of the 700 participants, then you still have the opportunity to view some recorded events which you can access on the NZDSA website. In the last quarter, the NZDSA has also focussed on the development of a number of new resources. The first digital resource launched in October was The Golden Years, Ageing and Down syndrome. This is an invaluable resource presented by the expert Geraldine Whatnell, Nurse Practitioner Mental Health and Addictions Service at Palmerston North Hospital. It provides a detailed overview of the older person with Down syndrome and includes how ageing may affect their health and wellbeing, as well as supports they may need if they are diagnosed with dementia. This resource is available on the NZDSA website.
Another key project for the NZDSA was to address the wellbeing of our members, so we were very pleased to commence the first two sessions of our Wellbeing series in November. This webinar series will continue in early 2022, so we hope you will join our online community as we explore different topics so we can learn together about how to build resilience in challenging times and ensure that we make space for self-care. In early 2022, we will release a digital resource on wellbeing. The NZDSA would like to thank the Lottery COVID-19 Community Wellbeing Fund and the Ministry of Social Development (MSD) for supporting the NZDSA to develop this wellbeing series and the digital resource for our community. Please follow us on Facebook and sign up for the NZDSA Enews so that you can attend the sessions in 2022. Tribute to Lena Zhang Harrap I don’t think anyone in the Down syndrome community will forget that heart-breaking day when we heard of Lena’s senseless and tragic death. It sent shock waves
through our community as we collectively grieved for Lena, her family, and friends. The NZDSA hosted private online social gatherings for our community so that we could support each other through this time. We all wanted to reach out to the family to show our support, and whilst we thought a vigil could show our support, we soon realised that the greatest support we could provide was to enable the family to grieve in private. We want to acknowledge Lena for her unique qualities, her contributions to her community, and for the wonderful person she was. We will continue to hold Lena and her loved ones in our thoughts.
40th Anniversary identity
NZDSA 2020-2021 Annual Report The NZDSA held its 2021 Annual General Meeting in Wellington on the 30th October. 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.
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International Volunteer Day Logo
I n te r n a t i o n a l Vo l u n te e r D ay – 5 t h December On behalf of the NZDSA, I would like to extend our appreciation and gratitude to all the past and current volunteers who, through their extensive contributions, continue to develop the Down syndrome community in Aotearoa. I hope that on Saturday 5th December you took a moment to celebrate International Volunteer Day. Down Syndrome Awareness Month To mark Down Syndrome Awareness Month, which is celebrated in October, the NZDSA launched two new resources. We will be sharing the events via Enews so if you haven’t subscribed, please contact Jess at hello@nzdsa.org.nz to receive regular Enews updates.
Welcome and adieu You will have noted that this edition of CHAT 21 has heralded a new editor, Dr Sarah Paterson-Hamlin, who many of you will know in her other role as the CEO of the UpsideDowns Education Trust. Sarah is a longstanding ally and advocate of the Down syndrome community, so we are delighted that in addition to her current role at UpsideDowns, she has also joined the NZDSA team at national office. Sarah and I have already collaborated on a few projects, so it will be a privilege to also be working together to achieve goals on the NZDSA strategic plan. I am sure you will join me in welcoming her to the NZDSA whānau. Sadly, welcoming someone to an existing role always means that you also have to farewell another member of the team. So, it is with gratitude that we acknowledge
Coen Lammers for all his contributions to CHAT 21 as well as his leadership in his communication and engagement role and his contributions to the marketing role he shared with Dan. Coen has brought a wealth of knowledge and experience to the various roles he has held in the NZDSA. The National Committee and Staff express their gratitude for all his contributions to uphold the vision and mission of the NZDSA. Coen may be stepping down from responsibilities on the National team but knowing his commitment to the Down syndrome community, we are sure that he will continue to be involved at some level. I know that you will join me in thanking Coen for everything he has done for the NZDSA community. Coen, we wish you every success in the new adventures you will be exploring.
The summer break also heralds that time of year when the team at the NZDSA National Office start to consolidate our work for 2021 and set in motion plans for events in 2022 before the office closes for the summer holidays. The NZDSA national office will be closed from the 22nd December 2021 to the 31st January 2022. We will continue to provide urgent support via the 0800 number.
Fun over Zoom
The team at National office and the NZDSA National Committee would like to wish you and your family a wonderful 2022! Hei konei rā Zandra
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Me & My Job
Jayden Eavestaff, radiating success in Auckland Where do you work? I work at Auckland Radiators, which is our family business. I am still in training to learn the ropes of the family business. How long have been there? I have started this year. What kind of tasks are you doing? I am learning how to take radiators apart. At the moment I am learning to take the top off the radiator so they can be replaced with new top tanks. I also do some spray-painting of the finished and repaired radiators. The boss is also teaching me how to use the blow torch to heat up the parts so we can remove them. What do you like most about your job? It’s fun working in the workshop. And I am really excited about being taught how to drive and operate the forklift. What do you think you want to do in the future? I want to do my best, so I can start working here once I finish school.
Announcing a new poetry section of CHAT21
Poetry is one of the most instinctive a r t fo r m s . H u m a n s h ave b e e n poets since before we had written language, printing presses, or universities. Written or spoken, poetry has always given voice to those who otherwise might remain unheard. I love these words from Fiona Robertson’s poem “Disability: The Director’s Cut”: But you are a story still being told and your choose-your-own-adventure options are so much wider than the clichés written by people who haven’t been here. We’d like you to write from the places and spaces you’ve been, so that those “who haven’t been there” might have a window into different experiences. From the April edition onwards, Chat21 will feature a selected poem submitted from one of our readers. Poems can be entered in one of two categories; person with Down syndrome or community member. The writer of the selected poems each quarter will receive a $15 book voucher from Time Out Bookstore! You can submit your entries at any stage to editor@nzdsa.org.nz
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Presiden’t Pen
2021 – a year of connection By Kim Porthouse
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I write this as 2021 draws to a close. As you all know, 2021 was our 40th anniversary as an organisation and I hope you all enjoyed our bumper October edition of CHAT 21 that looked back over the past 40 years. I know I thoroughly enjoyed it and many memories were evoked. For this column, I thought I would reflect back on 2021. People often ask the question ‘what does the NZDSA do?’ I hope my reflections may answer that question, especially as this year has been one that saw not only the NZDSA, but the country and world as a whole, face ongoing challenges to stay connected due to the ongoing COVID-19 pandemic. Despite the difficulties presented by COVID-19, I look back with pride at how we, the NZDSA, have successfully adapted to the growing online world. We have embraced the online Zoom platform for connecting with families, regional groups, each other, and other organisations to conduct meetings and provide education and support. Some Zoom events stand out for me. Earlier in the year we celebrated World Down Syndrome Day (WDSD) with a unique online event which we called ‘The Big Connect’, connecting families throughout the country on Zoom. During the nationwide Level 4 lockdown in August/September, we hosted Zoom cocktail hours on Friday afternoons. These were an opportunity for people to come together, see others face-to-face, and simply chat. Zoom sessions also helped our young people with Down syndrome
co n n e c t w i t h e a c h o t h e r re g u l a r l y throughout the year. Another major event and highlight of the year was the online conference that took place throughout D ow n Sy n d ro m e Awa re n e ss M o n t h (October). There were a wide range of speakers covering a wide range of topics, and this event was very well received and attended. A number of the sessions were recorded and are being produced into an online resource that will be available to members via our website. We also kept connected by increasing our use of social media platforms such as Facebook and Instagram to disseminate information to our members and the wider community. As always, the NZDSA has continued with the provision of support and information to the wider Down syndrome community in New Zealand through core services such as regular E-news updates, CHAT 21, the website, our 0800 number, via email, the loaning of Numicon maths kits, and the ongoing development and provision of resources. 2021 also saw the release of the revised and updated ‘Living with Down syndrome’ booklet. This comprehensive resource is available in hard copy as well as on our website. The NZDSA’s introductory brochure has been translated and published in a variety of languages, including te reo Māori, Samoan, and Hindi, and this is also available in both hard copy and online. This year has also seen extensive development of online digital resources. Over 30 resources have been developed and are now available
on our website. Many of these are new resources, with relevant older resources also redeveloped into digital formats. For the safety of our vulnerable community, it was necessary in 2021 to continue with our policy of no face-to-face events unless the whole country was in Alert Level 1. This policy will be reviewed regularly in 2022 to reflect the new traffic light system, vaccination rates, and ongoing new developments associated with COVID-19. The NZDSA, like so many other organisations, had to cancel or postpone some face-to-face events but, fortunately, there were periods earlier in the year when some face-to- face events were possible. A highlight event for me in 2021 was the National Achievement Awards hosted by the Her Excellency Dame Patsy Reddy and held at Government House in Wellington. Congratulations to Achievement Award winners Rochelle Waters, Jacob Dombroski, and Amelia Eades, who all thoroughly deserved the recognition. At this event, the Val Sturgess Volunteer Award was presented to Kathryn Sadgrove who has been a committed volunteer for decades, both in her region of Northland and nationally for the NZDSA. We hosted Capacity and Capability workshops for whānau in the Manawatū, as part of the System Transformation pilot in the region. We were also able to run seminars about aging and Down syndrome, as well as Down syndrome and Autism; these seminars were also recorded for development into online
resources. The NZDSA works to support regional committees and volunteers, and we were able to host a National Professional Development workshop for representatives from around the regions. As always, we have continued working towards our vision of the empowerment of people with Down syndrome to reach their potential, and early in the year we were able to hold a youth development camp and some leadership workshops. Furthermore, the NZDSA has supported the advocacy of people with Down syndrome to have a voice, with STRIVE re p re s e n t at i o n at D ow n Sy n d ro m e International Self-advocacy Forums, and our young adult leaders have participated in national research with the Donald Beasley Institution. The NZDSA has the roles of both systemic advocacy and raising awareness. We have undertaken extensive work on a range of submissions, increased media engagement, had representation at meetings with the Ministries of Health and Education as well as the Human Rights Commission,
NZDSA President, Kim Porthouse
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At the 2021 National Achievement Awards, Government House, Wellington
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Health and Disability Commission, and Office for Disability Issues. We maintain strong alliances and collaborations with a range of other organisations that work to advocate for the disabled community. We help to raise awareness through our digital video resources and humaninterest articles, which are released on a variety of media platforms. This year, as part of our advocacy and awareness work, we have done presentations for Perinatal A n x i e t y a n d D e p re s s i o n Ao t e a ro a (PADA), Awhi-at-home (via IHC), Asia Pacific Down Syndrome Federation, Mana Whaikaha, Student Midwives, Nelson Child Development Service, and Catholic Women’s League. We have also collaborated with Plunket to produce an educational resource for their nurses. In 2021, we saw the retirement of longstanding staff member Linda te Kaat. We were sad to lose Linda’s experience, organisational skills, and passion for our community. Over the years, she was instrumental in ensuring the strength and financial stability of the organisation. Her retirement, however, did give us the opportunity to review the staffing of the organisation, and we were able to restructure the position to make two parttime positions, which will help to provide additional resilience for the organisation. We welcomed Rose te Kaat – National Administration and Finance Officer, and Grace Perry – National Administration Support Officer. They have both already proven to be valuable members of the team.
It has been great to have our National Executive Officer, Zandra Vaccarino, back in full capacity this year. Her operational experience and wide networks are again working well for the organisation. Zandra brings an extra dimension and vibrancy to the organisation, which helps the NZDSA to thrive. I’d also like to mention Jess Waters, Social Media & Information Officer; Coen Lammers, Editor and Communications Officer; and Daniel te Kaat, Publisher and Graphic Designer, for their continuous efforts, commitment, and passion to providing the services of the NZDSA over the past year. They have been instrumental in assuring the success of the new website and a greater presence on social media platforms, which have played vital roles in the success of NZDSA in 2021. We are therefore sad to be losing the services of Coen Lammers. He has brought a vivacity to CHAT21 during his editorship, and his media and communications expertise have been invaluable to the NZDSA over the past few years. I welcome Sarah Paterson-Hamlin to the role of Editor. It is clear 2021 has been a full and busy year for the NZDSA. The activities and achievements of the organisation would not be possible without the hard work, passion, and dedication of not only all our staff and contractors, but also our support workers and volunteers, including regional volunteers and my colleagues on the National Governance Committee, and I would like to express my heartfelt thanks to all. Lastly, I would like to wrap up this reflection by taking the opportunity to express my gratitude to everyone who has contributed to NZDSA activities, events, and CHAT21. I also thank every one of our members who have participated in our online forums and other events. Together, we have all contributed to making this, our 40th year, both memorable and successful. Ultimately, your participation helps NZDSA achieve its goals to support families and empower people with Down syndrome to fulfil their potential and to be valued members of their communities.
Pae Ora submission – hoping for healthier futures By Sarah Paterson-Hamlin
The New Zealand health system is going through a period of significant change at the moment, one we hope will bring about a more equitable, compassionate, and navigable organisation. The 20 District Health Boards (DHBs) will be replaced with a centralised national health service called Health NZ, and a Māori Health Authority. “We need a system that works for everyone, and that is what we are building,” said Andrew Little, the Minister of Health. The Pae Ora (Healthy Futures) Bill is currently at Select Committee stage following its first reading in Parliament. Submissions closed on 9 December 2021 and are currently being considered by the Committee, led by Dr Deborah Russell. The UpsideDowns Education Trust, supported by NZDSA, submitted on this Bill, highlighting some of the problems of the current system for children with Down syndrome in New Zealand, particularly in regards to public speech and language therapy provision. The submission included data from a recent University of Auckland study on such provisions, and concluded with six recommendations for the Select Committee. These included adding
disabilities to the required knowledge areas for the Boards of Health NZ and the Māori Health Authority, provisions to eliminate the current fragmentation of services between the Ministries of Health and Education, and immediate action to address the current shortfall in service provision for tamariki Māori who struggle to access support provisions in te reo Māori-speaking environments. Woven throughout the submission, is emphasis on the value of regular and individualised speech and language therapy provision, and the shortfalls and inequities embedded in the current provisions which render UpsideDowns’ services so essential. Overall, as with the new Ministry for Disabled People, there is justification for cautious optimism that these reforms might make the path a little smoother for the next generation. We are looking forward to our oral submission on the Bill which will take place within the next few weeks.
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Champion Centre
Common sense, science, and singing at the Champion Centre By Dr Lauren Porter Registered clinical social worker & Clinical Director at the Champion Centre
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All of us have seen - or been - the parent singing Twinkle Twinkle Little Star to our baby. We configure our fingers into a diamond and lift them up into the air, all while singing and smiling and watching our baby’s face. We naturally sing soothing soft tones when our baby cries and try our best at upbeat songs from the Wiggles whilst we drive with them in the car. At the Champion Centre, music and singing is a part of every child’s programme. Parents and children sit together, led by a music specialist. We sing, play instruments, move our bodies, and twirl with ribbons. Singing, it seems, is a natural part of childhood. But why? There are many reasons for music and singing in human culture. We use song for communication, to pass on cultural messages, to pass the time, to understand our world, to integrate our feelings, to
express ourselves, to pass the time, and to have fun. Recent research indicates that singing has specific impact on infants and may reveal something unique about infants with Down syndrome. According to 2015 research out of the USA, when mothers sing to their babies for two minutes, babies are supported in their ability to self-regulate. Selfregulation is an oft-used term that refers to a person’s ability to manage and respond to their internal states. In other words, as we experience emotions, are we able to understand and flexibly respond to them, or do they end up controlling us? Self-regulation has two key components: managing our attention and managing our arousal. Learning self-regulation is a developmental skill that requires significant help from our caregivers. The younger a person, the more help they will
likely need. Over time, as children age, they begin to be able to regulate more and more on their own. Even adults still need help with regulation from time to time, especially during periods of great stress. Babies with Down syndrome can experience challenges in the realm of self-regulation. Due to differences in neuroanatomy, babies with Down syndrome can struggle with slower processing of stimuli and attention, difficulty comprehending the emotional displays of others, and low arousability that often co-exists alongside a difficulty coming back to calm once excited. Strategies to support self-regulation can be very important for children for whom this doesn’t emerge easily. Research demonstrates that two minutes of a parent singing to their baby supports self-regulation, and is therefore very important. Singing is a free, easy, available option for any parent. Babies don’t mind if we don’t have perfect pitch or even if we forget the words. According to the research, singing to our children is very different to just playing them music. Singing to an infant supports joint attention, dyadic interaction, and a positive experience for both parent and child. Singing to a baby helps the baby follow
the parent’s pattern of modulated, flexible responses; as the song changes, the voice and actions change. Singing to a baby also gives the opportunity to incorporate objects and props such as looking out the window for something in a song or twirling a ribbon on a stick. For babies with Down syndrome, this incorporation of external things to focus on is another important finding of the research. The requirement to focus both on mummy’s face and something else helps the baby learn to switch the focus of attention and learn not to look only through one lens or rely solely on mum to navigate the world. Switching back and forth like isn’t easy for a baby who may have a slower processing time, hence another way that singing to a child can support developmental learning throughout the lifespan. Sometimes research is all about science, sometimes it’s all about common sense. In the case of singing to our babies, it’s about both. Reference: de l’Etoile, SK (2015). SelfRegulation and Infant-Directed Singing in Infants with Down Syndrome. Journal of Music Therapy, 52 (2), 195-220.
Paige Goddard rocking out at music group
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One year until the Special Olympics National Summer Games - again!
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O n We d n e s d ay 8 D e c e m b e r 2 0 2 1 , over 1500 athletes and 600 volunteers planned to descend on Hamilton for the Freemasons New Zealand Special Olympics National Summer Games (the Games). Following a 4-year cycle similar to the Olympics and Paralympics, the National Summer Games is Special Olympics New Zealand’s (SONZ) largest national event and one of New Zealand’s largest multisport events. However, postponed for a year due to COVID-19 in late September, SONZ instead once again started up the countdown clock for one year to go until the Games, which will now be held 8-12 December 2022. While the Games are now a year later, the dates, eight venues, ten sports, opening and closing ceremonies, Healthy Athletes’ programme, and 5-day schedule will remain the same.
Despite being sad at the postponement, the extra year does have some positives! For Horowhenua athlete Eru Whakatihi, the chance to get more training in means he and his team will be more prepared for Hamilton. “I do basketball for my main sport. My coach, they’re really, really good for getting up our skill and confidence for the Games next year. “I feel excited, because since the COVID and lockdowns, we can’t play sports. It’ll be nice to bring all the players to Hamilton.” Other advantages of the extra year include the chance for more athletes to qualify for the Games with more qualifying events being allowed to run, and the chance to hold the Law Enforcement Torch Run (LETR) across Aotearoa. Wellington Athlete Michael Holdsworth was the official athlete lighter of the flame at the 2017 National Summer Games, and can’t wait to return to the Games in 2022.
“I’ve been involved with Special Olympics for 32 years and I’m very excited to have these Games, they’re fantastic, excellent, and I hope there will be a lot of people there.” Eru similarly says that despite the extra year his enthusiasm hasn’t dimmed. “I am really excited, can’t wait to go to the National Summer Games, to get up there and do our part, with other athletes, family, friends, and coaches and managers.” So #BringOn2022! We can’t wait to start getting excited – again - for the National Summer Games. See you there!
Right: Michael Holdsworth helps to light the flame for the 2017 National Games
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Finding the Upsides of 2021 By Sarah Paterson-Hamlin, UpsideDowns Education Trust
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The best year of the century for the Down syndrome community has come to an end. Despite the challenges of COVID-19 (and an all-Tāmaki Makaurau workforce!), UpsideDowns has still had a fantastic 2021, taking on no fewer than 90 new families! We are thrilled to now be providing speech and language therapy funding for 288 children with Down syndrome spread across every region of the country. We estimate this to be around one third of the total number of whānau who need our services, so keep spreading the word! We were planning all kinds of things for this auspicious year – a gala dinner, collaboration with Attitude, and lots of fundraising events for our members and supporters to get involved with across the motu, but of course, COVID had other plans for us all. We did embrace the times however, and held our first-ever virtual fundraiser.
Over 100 runners, walkers, and prampassengers collectively travelled from our HQ in Mt Albert, Auckland, up to Cape Reinga, down to Rakiura (Stewart Island), and back again. Along the way we had virtual greetings from members, celebrities, and friends. It was a lovely upside to lockdowns, and a new way to celebrate our work and our community with members outside of Auckland, something we’re always trying to do more of. 2021 was also the year we expanded our team from two to three, and welcomed Ella Pooley in the newly-created role of Fundraising and Digital Media Manager. Ella has excelled in the role so far, and helped fund hundreds of speech and language therapy sessions through her work in grants, regular giving, events, and social media.
“My favourite parts of the job are talking to families, especially when we can take them off the waitlist, and getting emails telling us we’ve been awarded grants!” Ella says. During the various lockdowns, Ella, Bea, and I (the UpsideDowns staff) have done our best to keep things ticking along as normal, despite a combined five children and nine flatmates to share spaces with! We’ve continued to engage in fun Makaton videos and have been so impressed at how families and therapists alike have picked up and run with teletherapy. Our hope is that this will have a long-lasting positive impact for those who live more remotely, or who otherwise find it challenging to attend in-person sessions. October in 2021 should have been a great celebration for the Down syndrome community, but of course it was deeply affected by the tragic death of Lena Zhang
Harrap. We are so grateful to have been able to work alongside the NZDSA and ADSA during this extremely challenging time. As a new year begins, we’re looking forward to all the new possibilities it will bring from the experiences gained in 2021. Closer relationships with our partners, more options for therapy in all parts of Aotearoa, virtual as well as (hopefully) in-person events, and the good fortune to live in a place that so clearly values and protects its most vulnerable. And of course, the opportunity for me both personally and professionally to be your new editor of Chat 21! I hope these two roles will complement each other well, and I thank the NZDSA and the community for your trust in me. Sarah Paterson-Hamlin CEO (and dishwasher) UpsideDowns Education Trust
The UpsideDowns team and the All Black Barrett brothers at a special celebration event at Eden Park, August 2021 (prelockdown)
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IHC Resources
Happy New Year from the IHC Library!
To start the new year IHC library will showcase some of the late arrivals of 2021. If you are interested in any of these books or would like to know what else the IHC library has please contact our library team (Phil, Ros, Ann and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ You can watch their library video at https:// www.youtube.com/watch?v=AunmBYTIZTM
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The invisible life of us by Kate Jones and Mandy Hose Summary: Kate Jones and Mandy H o s e h a v e experienced the highs and lows of parenting - and they wouldn't change a thing. The pair met a decade ago and bonded over their premature twins with additional needs and their remarkable capacity for love, laughter and swearing like a trooper. As the mothers grew closer, however, they confided that they felt 'on-the-floor lonely' sometimes because nobody was talking about what it was like for families like theirs. It was time to give their community a voice. So began the Too Peas in a Podcast, a weekly conversation in which they discuss the surprises, the challenges and the joys of parenting twins with additional needs. It was meant to support other multiple-birth mums and mums of kids with disabilities, so they were shocked to discover therapists, doctors, nurses, teachers, even people without kids were also listening. Now, Kate and Mandy are sharing their story on the page, delving deeper into the issues they care about and offering reassurance for those navigating a child's disability. They write candidly about what it's like to receive the initial diagnosis, how they perceive their children's lives have been impacted by their additional needs, how their own lives have changed, and those of their family and friends. Above all they convey their immense love for their children and the happiness they have brought into their lives. With their signature empathy, honesty and compassion, the Too Peas invite you into their world to laugh, cry and make a difference"--Publisher's description. You can find the podcasts at https:// toopeasinapodcast.com.au/
Demystifying disability: what to know, what to say, a n d h ow to b e an ally by Emily Ladau Summary: "A guide for how to be a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more accessible place. People with disabilities are the world's largest minority, an estimated 15 percent of the global population. But many of us - disabled and nondisabled alike - don't know how to act, what to say, or how to be an ally to the community. [This book] is a friendly guide to: how to appropriately think, talk and ask about disability, recognising and avoiding ableism, practicing good disability etiquette, ensuring accessibility becomes your standard practice and appreciating disability history and identity." -- Book Jacket “… But all of us—nondisabled and disabled people alike—have more to learn about how to make the world a better, more accessible, more inclusive place. So how do we do this? There’s a philosophy I’ve come to embrace that informs everything I do: If the disability community wants a world that’s accessible to us, then we must make ideas and experiences of disability accessible to the world.” Emily Ladau. The sibling survival guide: surefire ways to solve conflicts, reduce rivalry, and have more fun with your brothers and s i s t e r s by D a w n Huebner Summary: Having a brother or sister c a n b e to u g h . I t can also be great, but it's hard to see the great parts with so many bad parts
getting in the way. Problems like fighting and bossing. Teasing and jealousy. Tattling. Pestering. And more. But what if you could do something about those problems? Clear them away? Then you'd be able to actually enjoy your siblings! This indispensable guide from bestselling author Dr Dawn Huebner speaks directly to children ages 9-12, teaching skills to help them manage feelings and resolve conflicts, strengthening the bonds between brothers and sisters. Warm, witty and packed with practical strategies, this interactive book is the complete resource for educating, motivating and empowering siblings to live in peace. - book jacket D a w n H u e b n e r, P h D, i s a C l i n i c a l Psychologist specializing in the treatment of anxious children and their parents. She is the author of 9 books, including the bestselling What to Do When You Worry Too Much, Outsmarting Worry, and most recently, Something Bad Happened. A ro h a t e w h a i ora: he mahere piropiroma te tamariki By Craig Phillips and Rebekah Lipp This is the te reo version of Aroha’s way: a children’s guide through emotions. Summary: "Nau mai, hoake tatou ko Aroha, i a ia e kaupare ana i te taiatea, i te mataku, i te maharahara, me te anipa, ki ana tukanga mama ka taea e te katoa"-Back cover. Summary: "Come along on a journey with Aroha as she wards off nervousness, fear, worrying thoughts and apprehension, with simple, yet effective tools that everyone can use" - Back cover. This beautiful picture books takes children on a journey through emotions associated with anxiety and shows simple yet effective ways to help manage them. Aroha shows children a tool that she uses for each emotion which includes; movement or exercise, belly breathing or diaphragmatic breathing, mindfulness and connecting with others and sharing our worries.
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NZ Down Syndrome Association honours Dame Patsy as part of 40th anniversary
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Th e N ew Ze a l a n d D ow n Sy n d ro m e Association (NZDSA) sent a heartfelt message of gratitude to Her Excellency Dame Patsy Reddy for her support as the Patron of the organisation, as part of our Down Syndrome Awareness Month celebrations. October marked the 40th anniversary of the NZDSA, who have supported families and advocated for people with Down Syndrome since 1981. Dame Patsy finished her term as Governor General of New Zealand in October, and NZDSA President Kim Porthouse says that the 40th anniversary of NZDSA was a terrific opportunity to also mark the terrific contributions by its distinguished Patron. “On behalf of all our members, staff, and the wider Down syndrome community, we want to send a genuine message of thanks to Her Excellency Dame Patsy Reddy, and we would like to wish her every success in her future endeavours,” says Porthouse.
The NZDSA President says that her community has appreciated Her Excellency partnering with the NZDSA to promote its vision that people with Down syndrome are respected, valued, and equal members of their community, fulfilling their potential and aspirations. “Dame Patsy’s participation in the work of the NZDSA has assisted to change the attitudes and perceptions of the wider population, so that communities are more welcoming and include people with Down syndrome.” Porthouse is particularly grateful for t h e G ove r n o r - G e n e ra l h o s t i n g t h e annual National Award ceremonies and presenting the Achievement Awards to people with Down syndrome. “Being able to come to Government House and be hosted by the GovernorGeneral acknowledges the significance of these national achievements and serves to convey the important message that people with Down syndrome are worthy and contributing members of their
community,” says Porthouse, adding that Her Excellency’s support of World Down Syndrome Day has facilitated greater awareness about the aspirations and abilities of people with Down syndrome. The NZDSA started from a humble coffee group in Auckland in 1981 and marked its 40th anniversary with the largest Virtual Down Syndrome Conference ever hosted in New Zealand. The conference offered webinars throughout October to cover a huge variety of important topics around health, employment, decision-making, relationships and well-being. Porthouse says that the scope and variety of the webinars was unparalleled in NZDSA’s long history, and was also a wonderful opportunity for the Down syndrome community to connect after the traumatic events in Auckland.
Left: Edward Borkin and Erin Smith hand out flowers to the Dame Patsy Reddy and Sir David Gascoigne at Government House Right: Her Excellency Dame Patsy Reddy and Sir David Gascoigne with the winners of the 2021 NZDSA National Achievement Awards at Government House
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Contact Directory
Kim Porthouse President 0800 693 724 president@nzdsa.org.nz
Gwen Matchitt Vice President Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 zone2@nzdsa.org.nz
Bev Smith
Maia Faulkner
Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz
Zone 1 Representative Auckland 0800 693 724 auckland@nzdsa.org.nz
Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawkes Bay 0800 693 724 zone3@nzdsa.org.nz
Bridie Allen Zone 4 Representative Wellington & Wairarapa 0800 693 724 zone4@nzdsa.org.nz
NZDSA Commitee Angelique van der Velden
Glen Jelley Zone 6 Representative All areas below Ashburton 0800 693 724 zone6@nzdsa.org.nz
Shelley Waters
Zandra Vaccarino
Rose te Kaat
Grace Perry
National Executive Officer 0800 693 724 neo@nzdsa.org.nz
National Administrator 0800 693 724 na@nzdsa.org.nz
Administration Assistant 0800 693 724 grace@nzdsa.org.nz
Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz
Treasurer treasurer@nzdsa.org.nz
Averill Glew Self Advocacy Portfolio averill@nzdsa.org.nz
NZDSA Staff Daniel te Kaat
Jess Waters
CHAT21 Editor editor@nzdsa.org.nz
Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz
Social Media & Information Officer hello@nzdsa.org.nz
Paula Beguely
Pauline Marshall
Sandra Slattery
Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz
Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com
Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com
Sarah Paterson-Hamlin
Regional Liaison Officers
NZDSA Membership Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.
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Donations The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.
The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA Follow us on Instagram to see what our communities are up to at nz_down_syndrome Check out the NZDSA’s website at nzdsa.org.nz
NZDSA Notices The NZDSA have curated information on COVID-19 on our website The NZDSA attends MoH disability engagement meetings so please contact Zandra neo@nzdsa.org.nz if you have experienced difficulties in accessing vaccines. The NZDSA will be sharing the latest information available from the Ministry of Health and resources in our COVID-19-EBulletin.
Rose Award 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 Rose at na@ n zd s a .o rg . n z yo u r n o m i n at i o n s fo r 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.
Websites that have the latest and best sources of information • https://covid19.govt.nz/ • https://www.health.govt.nz/ourwork/diseases-and-conditions/ covid-19-novel-coronavirus/ covid-19-information-specificaudiences/covid-19-informationdisabled-people-and-theirfamily-and-whanau
Numicon Kits Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon, the website is numicon.co.nz/ If you would like to borrow a kit please contact Rose te Kaat for more information at na@nzdsa.org.nz or on 0800 693 725. Thanks Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • Lottery Grants Board • Bluesky Community trust • COGS: Christchurch • COGS: Auckland City • COGS: Coastal Otago • COGS: Manukau • COGS: Whangārei • COGS: Waitakere City • Holsworth Charitable Trust • Eastern & Central Community Trust
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Our People
Top left: Fletch Gallagher enjoyed some time at the Wellington City and Sea Museum and loved being the driver of the crocodile bikes Top right: Paige and Dawn just before they flew on a tiny wee Sounds Air plane from Picton to Wellington Centre: Te Hanni Brown - 9yrs old. with Opahi Brown 19months Bottom left: Jesse Rivers (16) hanging out with his Dad Bottom right: Jessica Jelley cooked tea a couple of nights while she was away camping in a bus — she loves to cook, she even cleaned the dishes afterwards
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Top left: Isla McClean on a hike with the family Top right: Surfs up with Mason Harkness Centre: Jordy Cooper (13yrs) has been joining her Dad Paul on riding adventures around South Canterbury and North Otago over the school holidays. She is loving it and turning out to be pretty keen – as long as there is a stop at a café along the way Bottom: Oliver French (27) in his happiest place, at the beach where he always spends it covering himself with sand!
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Our People
Top left: Lily curtin 3 years old at Tairua Estuary Top right: Cayden Loo at full speed Bottom: Xervier Doney — 15 years old, rafting, over Christmas