CHAT 21
ISSUE 89, Autumn 2022 ISSN 2744-4635
A journal about & for the New Zealand Down syndrome community.
Farewell Coen
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Tēnā koutou katoa, It’s a real thrill to be introducing my first edition of CHAT21 as solo editor. Coen was such a bedrock of support for the Summer edition, and ensured a seamless transition for which I am eternally grateful. Pictured here is his zoom farewell with the team – full of laughs and good memories. So, it’s been a little intimidating to step into his shoes alone for the first time, but with support from NZDSA and the wider community, I’ve had an absolute blast putting this together. Dan and I are trying something a little d i f f e re n t b a s e d o n Z a n d ra ’s g o o d memories of magazines from times gone by. Coen was always diligent about providing content for every age group, and we’re adding a visual key to that so if you’re short on time, you can skip right to the part most relevant to you, and if you remember those old magazine with the coloured tabs, you can have a taste of those times again! Of course, I hope every reader will get to every part of this edition of CHAT21, as there’s so much to enjoy within it. Another World Down Syndrome Day has been marked with great celebration, and although once again COVID-19 has impacted these things, it still hasn’t
managed to quell them completely! You’ll see and hear more about how the day was marked across the motu, how NZDSA ramped up the Big Connect for its second year, and enjoy a quick history of how we came to be celebrating this day every year in the first place. Plus, a look into how Auckland Down Syndrome Association held their world-famous-in-New-Zealand Success in School conference online for the first time. This season I also had the real pleasure of interviewing my big sister, Robyn, who is Series Producer on the brand new show Down for Love which many of you have been involved in. I also had the wonderful privilege of sitting down (virtually or in reality) with Carlos, Amelia, Peter, and Laetitia to learn more about their jobs, enterprises, passions, and talents. Yo u ’ l l f i n d s o m e f a s c i n a t i n g a n d educational updates from our friends at Champion Centre, Special Olympics New Zealand, IHC, UpsideDowns, and Raukatauri Music Therapy Centre. I hope you have a wonderful time reading this edition, and a fantastic autumn. Stay warm, enjoy the leaves, and find as many feijoas as you can! Sarah Paterson-Hamlin
Contents A brief history of World Down Syndrome Day
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How young is too young to join UpsideDowns?
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Signs of the Times: sign language for people with Down syndrome
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Success in School: Helping children who learn differently
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Celebrating potential: Laetitia & The Awesome Superheroes
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Raukatauri brings music to more & more Kiwis
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Award winning photographer, Carlos Biggemann, adds to his trophy cabinet In the kitchen with Peter
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‘She’
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Me & my job
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Her & her job
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Special Olympics trailblazer Colin Bailey still going strong after 40 years
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President’s Pen
26
Neo Notes
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Down for Love interview Robyn Paterson
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NZDSA Notices
37
World Down syndrome day across the regions
38
A huge thank you for your fundraising efforts!
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WDSD22
Panelists and speakers at the Big Connect 2022
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World Down Syndrome day celebrations in 2006
A brief history of World Down Syndrome Day By Sarah Paterson-Hamlin
Ordinarily, this edition of CHAT21 would be packed full of images and stories from how World Down Syndrome Day (WDSD) was celebrated all over Aotearoa. Of course, once again things were a little different this year, and largely curtailed due to the Omicron outbreak, and the need to keep everyone but especially our immune-compromised loved ones safe. In place of this, we’ve put together a little potted history of the day and how it came to be that we celebrate together with communities all over the world on 21 March every year. Origins It was at the UN General Assembly in December 2011 that World Down Syndrome Day was first formally declared as a global celebration, but groups around the world had been connecting on that date since at least 2006. Why 21 March? 21/3 represents three copies of chromosome 21 of course! And you can’t beat a good science pun in my view.
You could argue that the first public celebrations of the Down syndrome community date back to the performances at Normansfield from 1879 onwards, where Langdon Down – the scientist whose name the English-speaking world attaches to the syndrome – and his wife, Mary, put on performances both for and including their charges. It’s hard to know for sure, but the French have a pretty good claim on having come up with the 21.3 thing. In English, Trisomy 21 is used to describe the most common form of Down syndrome, and doesn’t refer to Mosaic or Translocation Down syndrome, but in French, ‘trisomie 21’ describes all three, so it’s logical that the Francophone world were the first to hit on the 21st March date. L’ARFT (Association Française pour l a Re c h e rc h e s u r l e Tr i s o m i e 2 1 o r French Association for Down Syndrome Research) organised a conference on that date in 2005. It was likely as a result of this that Down Syndrome International (DSi) chose that date as a focal point for their increasingly global activities, and how the World Health Organisation (WHO) came to recognise the date in 2007. A WDSD website was created in 2006 on behalf of DSi, which made it easier for Down Syndrome Associations (DSAs) around the world to see what each other were up to. It was this collaboration, predominantly led by the DSAs of Brazil
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WDSD22
World Down Syndrome Day celebrated in Karachi
and Singapore, which enabled the UN Resolution to ultimately be introduced only a few years later. New Zealand was quick off the bat, and celebrated WDSD in Palmerston North at an afternoon tea hosted by the Mayor, Heather Tanquay. In keeping with the 21, 3 we invited 21 people for afternoon tea at 3pm. Then in 2007 in the company of the Governor-General and one of Queen Elizabeth II’s sons (we don’t have to dwell on which one). NZDSA organised the event, where three young New Zealanders were given awards before enjoying a very fancy high tea. From there we were off and rolling, and Kiwis have celebrated people with Down syndrome every March since then. Regional DSAs hold their own events, schools often hold mufti or theme days, NZDSA members from across the country get together on virtual projects, and many families take to social media to celebrate.
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Celebrations around the world For our friends in the temperate sections of the Northern Hemisphere, odd socks are a great, simple, inclusive way to mark 21 March. Alongside the increasingly global use of #WDSD, you’re likely to see #LotsofSocks trending around this time. Why socks? Especially when for some of us it’s always going to be way too hot in mid-March for that kind of carry on? Basically because a chromosome
is shaped roughly like a sock. As Down syndrome is all about having an extra chromosome (or sock) and the experience of having an extraneous/odd sock is fairly universal, wearing odd socks on World Down Syndrome Day is a fun and easy way to start a conversation with those around you who might want to find out more about the Down syndrome world. On a related note, the te reo Māori for Down syndrome is mate pūira kehe, which translates approximately to ‘condition of the odd-numbered chromosome’. Even before WDSD was official, groups around the world had been celebrating Buddy Walk – a concept originating in the USA, where people with Down syndrome and their supporters go on a fun walk/run, often accompanied by stalls and activities at the start or finish line, and raise funds and awareness. In the first year it was held, 1995, there were 17 walks held across the USA. By 2017, this had burgeoned to 250 events across the world, raising an estimated total of $14.2 million – that’s in US dollars! In most parts of the world, the nature of celebrations around WDSD varies each year, depending on which groups are taking charge and – I suspect – the amount of volunteer energy available in any given time and place. One thing that’s constant though, is that you’re never far from a celebration – no matter what continent you’re on! (Well, ok, I haven’t managed to
find any past events on Antarctica – but maybe 2023 will be the year?). Let’s take a tour of the continents Africa In Liberia, Nigeria, Uganda, Tanzania, and many more places, local groups have created fun events like exhibition games, fun runs, and fairs designed as a meet and greet opportunity – dispelling negative stereotypes about people with Down syndrome by encouraging people to get to know the individuals behind the label. Asia Every year in Pakistan, the Karachi Down Syndrome Programme holds a large carnival showcasing the talents of people in the area with Down syndrome, which is often accompanied by a significant advertising campaign promoting inclusion and awareness. With each passing year, the carnival attracts more and more attendees and significant public figures as well as increasing media coverage. Singapore has a particularly extensive collection of annual fixtures around WDSD, engaging corporates with their Charity Bowl tournament, school kids with a Charity Movie Night, and everyone else with a Buddy Walk and a Gala Dinner – all held every March! Europe The well-caffeinated citizens of Ireland tend to celebrate with coffee mornings in various parts of the country. Over the years they’ve held all kinds of creative events for WDSD, but coffee and cakes are a common denominator. Remember L’ARFT who came up with it all in the first place? They still hold a scientific conference every year around WDSD, attracting scientists, medical students and professionals, and philosophers from all over the world. These are just a handful of examples – honestly, the events and activities are endless! Showing love in a time of COVID Inevitably, World Down Syndrome Day celebrations took a big hit in 2020 and 2021, and now 2022 as well. Here in New Zealand, the four-level alert system used to contain COVID-19 was announced on
WDSD 2020 itself, cancelling any events that hadn’t already been abandoned at that point. By 2021, we were more prepared for the virtual. NZDSA hosted the Big Connect for the first time and replicated the success of that event in 2022. This year’s event featured the Honourable Carmel Sepuloni, Paula Tesoriero, Bridget Snedden, a host of other experts and some familiar faces from the community responding to the theme of this year’s WDSD: What does inclusion mean? The second part of the event split attendees into three break-out rooms: Education, Employment, and What do we want in the future? For the Education group, inclusion meant an overhaul of the current funding model, which gets whānau off on the wrong foot before schooling eve n b e g i n s . Fo r t h e E m p l oy m e n t group, inclusion meant a movement away from deficit-based models as well, educating employers and encouraging them to see abilities and potential. The group contemplating the future saw opportunities to change narratives, looking at what’s possible, to question our own attitudes, and the acknowledgement of the trailblazers who came before us. As we move forward from WDSD 2022, what does inclusion mean for you? How do you wish people included you and your situation better? How can you be more inclusive in your daily life? If you could design a perfect example of an inclusive society, community, school, workplace, family etc., what would it look like? Although COVID-19 has created barriers to so many parts of our lives, it has also led to some progress in inclusivity. How many meetings are now hybrid in-person and zoom sessions for example, enabling people who are unwell, living remotely, or without access to private transport to attend? How many workplaces are now enabling remote options, something advocates in the disabilities sector have been fighting for over decades? I’ll close with the words of Duncan Armstrong, a STRIVE self-advocate who left the Big Connect attendees with the following aspiration: “In the future, there won’t be a difference between a disabled and non-disabled person.”
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Babies
How young is too young to join UpsideDowns? By Sarah Paterson-Hamlin, CEO (and dishwasher) of UpsideDowns Education Trust
The short answer is – you’re never too young! UpsideDowns funds speech and language therapy up to the age of 21, but we have no minimum limit on the age of our members. We’ve even had members come on board before they were even born, entering our records with the first name ‘TBC’! This is one of the most commonly asked questions we receive, and it’s really great to be able to tell people that they can apply at any stage of childhood or adolescence. Sometimes we have a waitlist as long as eight months for funding, so the sooner you can apply the better. At other times, you may only need to wait a few weeks or even days for funding to become available, but that’s ok too. It’s fairly common for members to receive funding and then to take some time to begin using it. We’re in no hurry – what matters is that your whānau know that when the time comes to begin with a private speech therapist, that funding is ready and waiting for you. Sometimes there’s a misconception that our funding is provided for one year only, or that once you reach your annual funding cap, you won’t be able to claim any more. However, once you become a member, as long as you continue to pay your $15 annual fee each March, we can help fund up to $2,200 of your child’s speech and language therapy every year until they turn 21 (unless you choose to resign first). It doesn’t matter if you’re 20 years old or 20 weeks old when you begin.
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Another hesitation we come across is the fear that you will be taking someone else’s place, or preventing someone else from receiving help with their speech therapy needs if you join our waitlist or membership. Once again, there’s nothing to worry about here. UpsideDowns has gone from 110 to 300 members in just four years, and we are happy to keep expanding. Our fundraising rises to meet the demand, and if you don’t apply, then we don’t know you’re out there wanting to engage with speech therapy. For example, if we have three families on the waitlist from the Canterbury area, we know we need to step up our requests to grantors or local councils in that part of Aotearoa. You may also be perfectly happy with the support you’re receiving from public entities such as the Ministry of Health or the Ministry of Education. This is fantastic, and we certainly aren’t here to take away from what is publicly provided. However, we do understand that the reality is that these services are stretched. The Ministry of Health need to focus primarily on feeding needs, and generally aren’t able to provide much support in terms of early communication. In addition, they typically discharge patients with Down syndrome by the age of two. The Ministry of Education operates what they term the consultative model, and focus their limited resources on supporting teaching staff to incorporate speech pathology-based techniques into the classroom.
Leonardo Ayers-Val
What UpsideDowns can provide is the opportunity to bring a private speech therapist into the equation. They can see your child one-on-one, with regularity and individualised programmes that can unleash even more of their awesome potential. Unfortunately, this is something the public system simply can’t provide most families. The vast majority of our therapists work in tandem with any public professionals involved at the time, who are generally aware that they aren’t able to fully meet the needs of their charges, and are often as thrilled as whānau to know a
private therapist is able to be on board. So, even if you’re currently happy with the public speech therapy you’re receiving, consider signing up with UpsideDowns so that if this changes you have a good handover period to a private therapist, or so you can supplement what’s already being provided. To apply for UpsideDowns, simply head to our website and click the apply button. https://www.upsidedowns.co.nz/apply The form takes a couple of minutes to fill out, and it could make all the difference.
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Preschool
You can learn NZSL for free online http:// www.learnnzsl.nz/#/ id/co-01
Signs of the Times: sign language for people with Down syndrome By Lauren Porter, Clinical Director at the Champion Centre
“I’m hungry.” “It’s a pig!” “I am going horse riding.” “We are eating chicken.” “I need help.” “I am finished now.”
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If you heard such statements from a group of pre-schoolers, you would probably think this was excellent communication. What would you think if you saw this communication instead? On any given day in a Champion Centre programme, you might see all these things and more, because you would see children from infancy using sign language to express themselves. New Zealand Sign Language is one of Aotearoa’s three official languages. Often we think of sign language as something to help children who have not yet learnt to express themselves with verbal language. Because children with Down syndrome show delays in producing their first words, sign language is a complement to their strengths. Such strengths include non-verbal communication in the realm
of gesture. Whilst supporting children to communicate with sign gives an alternative to reliance on spoken words, research shows sign language communication with infants and young children with Down syndrome actually predicts spoken vocabulary a year later. Sign language is a communication pathway that uses gesture in specific, intentional, a n d s e n s i t i ve ways . S i g n l a n g u a g e differs from other sorts of gesture communication such as pointing, nodding of the head, or facial expression, most of which occur spontaneously and are not taught as language. Delays in vocabulary development, phonological memory, and oral motor planning are commonly-faced hurdles for children with Down syndrome. However, visual short term memory and manual motoric development are often strengths that can be kindled by learning to communicate with sign. In fact, babies with Down syndrome produce signs far more readily than their age-matched, typically-developing peers (but tend to produce fewer gestures). There are signs that communicate actions,
UpsideDowns reads books with Makaton sign for lockdown - available on their youtube channel
objects, social requests and responses. The ability to produce communication through signing like this creates a significant advantage, allowing access to a large repertoire of communication signs to convey a broad range of meaning. Not only does use of sign language have an important and immediate impact on a child’s ability to communicate and be understood, the learning and expression through sign language maps onto the development of spoken language, with more signing equating to more spoken words. A huge win-win! The use of sign is something parents do, too. The ability to communicate back and forth – to share “circles of communication” – is at the heart of learning and interaction. The experience of having two people engage mutually in a shared focus is called “joint attention”. Joint attention is fundamental to being part of relationships, the world and development. Gestures like pointing or eye gaze, and communication gestures like sign, open up the possibilities for joint attention. A child has the ability to communicate interest in something which the parent can notice and respond to. Sign is a tool for active participation in the joint attention process. Research suggests that for children with developmental disabilities, parents are often more directive, with joint attention occurring less frequently or in a delayed fashion. This is usually because the child does not appear to have the capacity to be
an active partner in such communications. Again, sign provides a doorway to a world that is otherwise harder to access. In a single morning I watched children communicate all those opening statements through the use of sign. I watched their parents respond and share their focus. With the powerful inclusion of New Zealand Sign Language into a child’s life, we achieve immediate communication, future verbal skills and the foundation of shared experience between children and their treasured loved ones. References: Özçalişkan, Ş., Adamson, L. B., Dimitrova, N., Bailey, J., & Schmuck, L. (2016). Baby sign but not spontaneous gesture predicts later vocabulary in children with Down syndrome. Journal of Child Language, 43(4), 948-963. Mason-Apps, E., Stojanovik, V., HoustonPrice, C., & Buckley, S. (2018). Longitudinal predictors of early language in infants with Down syndrome: A preliminary study. Research in developmental disabilities, 81, 37-51. Paparella, T., & Kasari, C. (2004). Joint attention skills and language development in special needs populations: Translating research to practice. Infants & Young Children, 17(3), 269-280.
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Primary
Success in School: Helping children who learn differently by Kirsten McDonald, Success in School Course Facilitator and Auckland Down Syndrome Association Committee Member
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In March 2022, Auckland Down Syndrome Association (ADSA) conducted our twoday Success in School Course online and what a success it was! Key themes throughout the course were always having high expectations, using strategies as widely as possible, and keeping in mind that many are essential for some, but beneficial for all, and the importance of whānau/carer and school communication. Our zoom format not only allowed participants as far north as Kerikeri and as far south as Balclutha to attend, but also those isolating and/or those with COVID-19, and reduced Auckland traffic woes. We had between 52 and 56 participants each day including parents and whānau, teachers, learning support assistants, and SENCOs to name a few, as well as representatives from NZDSA, and UpsideDowns Education Trust (who also helped as zoom support – thanks Sarah and Bea). As an added benefit of going online, we were also able to record most of the presentations and give access to participants to watch for a limited time after the course. Our course has a host of expert speakers and at centre stage were members from
ADSA. Edward Borkin, who is also part of STRIVE, a group of self-advocates with Down syndrome, opened our course, and we were also honoured to have Amelia Eades and Emma Ferens present at different stages. All three presenters articulately shared their experiences of school and life, and how we can help support them. With these presentations we were able to keep the reason of why we were there forefront in our minds. Thank you Edward, Amelia and Emma. On day one, our other presentations covered inclusion, learning profiles, behaviour, and friendships. Dr Jude McArthur presented on ‘Inclusion and Universal Design for Learning’. Jude currently works in Critical Studies in Education at the University of Auckland and her wealth of knowledge and expertise inspired us all to keep striving for fully inclusive communities. I presented next on ‘The Learning Profile of Students with Down Syndrome’, basing this presentation o n re s e a rc h f ro m D ow n Sy n d ro m e Education International, Down Syndrome International and their recently published International Guidelines for the Education of Learners with Down syndrome, and
of course, my own lived experience with our eight-year-old son Joshua. Our next presentation on ‘Understanding and Supporting Behaviour ’ was given by Arul Hamill from Paediatric Occupational Therapy and Physiotherapy, who took us through some of the potential reasons behind different types of behaviour and ideas for how to support our children. This was followed by Fehm Hussain on friendships. Fehm is currently a Year 2 teacher with a wealth of SENCO and inclusive practice experience, and shared an insightful presentation on the importance of friendships and practical ways of how we can support all our children in this essential need. On day two, we heard about adapting the curriculum for maths and numeracy, literacy, the importance of visual aids, and we finished off with Individual Education Plans (IEPs). Our first presenter on ‘Numeracy’ was by Dr Rhonda Faragher, the director of the Down Syndrome Research Programme at the University of Queensland and editor of the recently published International Guidelines. Her presentation gave an overview of the learning challenges in numeracy and
how to support ongoing learning without being stuck at Year 1 maths. Following this was Margi Leech and Catherine Huxford of Numicon New Zealand who demonstrated the value of Numicon and how to use this key tool to support numeracy. Next up was Dr Sally Clendon who works at Massey University in their Institute of Education with ‘Literacy and How to Use the Curriculum’. Sally highlighted the importance of a comprehensive approach to literacy, supported by evidence-based research, examples, and great advice for all. Fiona Kenworthy of Small Talk Therapy then presented her session on ‘Using Visual Supports to Assist in Accessing the Curriculum’. This highlighted the importance of visuals for our learners, real classroom examples, and the value of visuals for all. Our final presentation of the workshop was by Andrea Smart on ‘Collaboration for Success – Individual Education Plans’. Andrea is the Practice & Implementation Advisor for Learning Support at the Ministry of Education and took us through the IEP process and just how flexible the approach is, as well as doing some pretty good myth-busting about this area.
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A special thanks to Paula Beguley ADSA’s Community Liaison Officer for her presentation on the ADSA and her professional, dedicated expertise and hard work in organising this course. It was a fabulous two days with participants inspired and geared with knowledge and practical advice. Success in Schools runs in March and August, with our next course scheduled for 8th and 9th of August 2022. We are excited to be looking at a hybrid format of face-to-face in Auckland AND streamed online. For further details of upcoming dates and presenters go to https://adsa.org.nz/how-we-help/courses
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Just fantastic. Thank you so much. This has been the most engaging, enjoyable, comprehensive 2-day workshop I've attended in a long time. Very excited to apply my learning in practice. Fantastic course! So well put together and relevant to the learning of children with various needs. Oh my gosh I can't believe how smoothly these 2 days ran and all online it was still so captivating, I learnt so very, very much for children with Down syndrome but for helping all of the children in my Year 1 class. I loved how many of the presenters had a 'real' felt meaning of working and living with gorgeous individuals with Down syndrome. Thank you so very much!
Celebrating potential: Laetitia & The Awesome Superheroes
Young Adult
By Sarah Paterson-Hamlin
If you’ve been to a Christmas market in the Hibiscus Coast recently, you might have come across Laetitia Tan, the 19-year-old author of The Awesome Superheroes. Laetitia attends Carmel College in Milford and lives with her parents and big brother Nathanael. Although her favourite subjects are tourism and science, she also has a penchant for story-telling. This is what inspired her family and speech therapist to work with her on a book about one of her favourite topics – superheroes! “It happened because I always have a problem with my grammar, punctuation and spelling, so the speech therapist helped me to practice. Because I have Down syndrome, every time I learn something new, I learn very slowly, but if I know why I’m doing it, I learn fast and I know what to do,” Laetitia says. Laetitia’s passion for superheroes and storytelling meant that the project was a great way for her to explore her interests whilst developing her language skills at the same time. In our zoom meeting, she was flanked by a background of Iron Man, Black Widow, and Captain America, all lending her inspiration. When asked why she wanted to write a book about superheroes, Laetitia said, “I want to inspire many people about what they need to learn. Kids can read it and learn to be heroes and why they need to be heroes – to make the world a better place.” But it’s not just about the readers themselves finding inspiration within. Laetitia also wants us to see the heroic qualities in those around us – even when it might not be too obvious. “The most important part of the Awesome Superheroes is that kids need to try to believe in heroes. You can be a hero, but everyone can also be a hero if they want to.” Laetitia’s Mum, Valentina agrees. “Our purpose is really about advocacy, celebrating diversity, celebrating potential.”
This purpose is why the book comes at such a low price, despite the high quality of the publication. It is available for only $15 via the Awesome Superheroes Facebook page, at local markets, and from Never Ending Books in Orewa. It’s been a two-year journey from concept to publication, with many different steps in between. Laetitia explains: “It’s self-published. After I wrote the story there was the editor, then we put all the illustrations and words of the script in order, then the graphic designer, then the printer.” And now the team are going through the process once more, as they prepare a Christmas sequel for release in time for the 2022 festive season. Meanwhile, around 400 copies of the original have been sold all over the world, in addition to the 100 copies given away to friends and whānau, local libraries, local schools, and other supporters. “We’ve had orders from people in the UK, US, Ireland, Malaysia…” says Valentina. “It’s really cool. One of the first markets we did, this gentleman bought if for his grandchild in France and wanted to take a photo with Laetitia to prove he’d met the author. It’s so amazing to hear the book will be making it to France!” L a e t i t i a a n d h e r M u m wo u l d b o t h recommend story writing to anyone struggling with language – especially if it’s on a subject that you love. Laetitia says, “a story is not a thing you write, it comes from inside you, and can inspire other people to your imagination and power.”
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Primary/teens
Raukatauri brings music to more & more Kiwis By Jen Glover, Clinical & Centre Director, Raukatauri Music Therapy Centre
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While music therapy may not be widely known in Aotearoa, it has been my experience that as soon as New Zealanders see videos or photos of our work as music therapists, they immediately ‘get it’. These photos of Aiden with his music therapist, Alex, make it clear that music therapy is about playing instruments and singing songs, but if you look a little closer you will see much more: a supportive relationship, shared attention, sustained engagement, motor skill development, collaboration, connection, excitement, confidence, joy, pride, humour... the list goes on and on! At the Raukatauri Music Therapy Trust, we work with clients with Down syndrome, as well as other developmental disabilities, from when they are very young through their adult years. As Dr. Lauren Porter from the Champion Centre explained so well in the summer edition of Chat 21, simple musical interactions between
carers and babies can be particularly helpful for very young children with Down syndrome in terms of attention, emotional regulation, and laying a foundation for developmental learning. As our clients with Down syndrome become a bit older, often our goals for them shift to a focus on expressive language and cognitive growth, before adapting again over time to an emphasis on the development of self-esteem and relationship skills. This journey is shown beautifully through this short video segment from TV3’s The Project which tells George’s music therapy story: https://fb.watch/9CoQ8K4fJR/. One of the most exciting developments for us in the past year has been the introduction of the ‘Rylan’s Music Mates’ scholarship fund for children and adults with Down syndrome living in Northland. In 2020, Ahipara resident Zarn Reichardt set off on a 39km run and raised a
whopping $16,442 from his community in the process. Zarn is the father of Rylan, a young boy with Down syndrome, and was determined that his efforts would help to bring music therapy services to Rylan and others with Down syndrome in Northland, with a particular focus on the under-served Far North where his family lives. Zarn’s efforts have funded the scholarship programme, which provides six months of music therapy at a cost of only $10 per week to the whānau, and have also made it possible for Raukatauri to run group programmes in collaboration with the Northland Down Syndrome Association. If your whānau or someone you know in Northland could benefit from this scholarship programme, please be in touch as we still have spaces remaining for 2022.
Raukatauri’s other big story for 2022, is that we will be open in the Bay of Plenty from June thanks to a generous grant from the Ministry of Culture and Heritage! With one Registered Music Therapist based in Tauranga and another in Whakatāne, we are hopeful that BOP whānau will find it easy to connect with us, especially since the Ministry funding is highly subsidising our fees in the area. The Bay of Plenty joins our centres in Northland, Auckland, and Hawke’s Bay, so please be in touch with us if you live in one of those regions and want to learn more about growth and development through music therapy. Ngā mihi nui Jen Glover, Clinical and Centre Director Raukatauri Music Therapy Centre
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Adult
Award winning photographer, Carlos Biggemann, adds to his trophy cabinet
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I am thirty years old and I live on the Otago Peninsula – it is quite magical. I live with my parents and my sister lives in Auckland. The four of us are from Bolivia. I did primary in Sydney and high school in Dunedin. I did one year of Digital Photography at Aoraki Polytechnic. I had lots of fun, met new faces from lots of backgrounds. Photography was something I really wanted so I fought for it. I also like swimming, for 15 years I’ve been swimming in Moana Pool – the waters of Danyon Loader! Light and contrast are what first interested me in photography. I used to be the paparazzi, the camera man, of the family. Somehow I was obsessed with it – that started my career as a photographer. I have now done five exhibitions – three in Bolivia, two in Aotearoa. I have an Instagram account and I also have a website of my work.
For more than ten years I’ve been taking photographs of the skies here in Dunedin, and of course in different places. From there I have managed to choose the best ones, it took me two years. It all started with my photograph called ‘Colours of Fire’ of a sunset over Uluru Rock. From that moment I was hooked by it. I have fallen in love with the rich colours, the contrast, the shapes, the texture, the drama of skies – from there I wanted poetry to go with my skies. How? I was encouraged to meet a lady, Kirsty. She saw my skies, she was moved by it, she almost cried. From there, I have managed to acquire 24 poems to go with my photos in a book called Cumulus. Over the years I have managed to fall in love with the sky. I wanted to combine poetry because it is only poetic words that can express what the sky is telling us. Thanks to Cumulus, I won the Creative Attitude Award. I didn’t know that I was chosen to receive the trophy and certificate. Because it was a hell of a surprise, I felt just overwhelmed. I felt happy, I felt that one of my dreams was now a reality - to make a book of skies for family and friends back in Bolivia and here as well. When I watched it, I felt valid. I had tears of happiness. The Attitude Awards are important as they make us realise that people who have Down syndrome can do extraordinary stuff. That people who suffer from an accident – they can do stuff that they didn’t realise they’d be able to do. To make our voices to be heard. That we feel pain, that we cry, that we can experience ourselves, that we can do things that a normal person can do.
“We have heads to think, legs to walk, hands for creativity, we will not stop doing what we truly love.” It doesn’t matter if it is photography or baking or paragliding or these adrenalin sports, or non-sportive things, making stuff with the hands or learning languages. We can be religious, we can be warriors, we can climb every mountain and swim every ocean. That’s what Attitude Awards mean to me. But the most important of all, to have good attitude in everything. Doesn’t matter what. We put our dedication, hours of practice, we can be more than what is understood of us. I really hope that this programme will continue. Because I really want to see it more and more and more. I hope from this I can touch one or two hearts.
Left: Carlos in front of a sample of work from Cumulus Right: Carlos with his parents and the Attitude Creative Award
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Adult
In the kitchen with Peter By Peter Rees
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Who are you in a kitchen? You are the chef - you have the tools of the trade around you, even if it is only a knife or a fork, you have to tune in with the utensils around you and make something that you feel like you have a connection with. I like to take a step in the right direction with my creation, whether it’s a stir fry or a roast chicken, it’s something that shows what you want to be like. Even if you spice it up or mix it to the next beat in the recipe of life. I felt like that I knew what it’s like when I won an Award Scheme Development and Accreditation Network (ASDAN) award for my cooking skills at SkillWise. And maybe when I am helping out at home from time to time I feel like I have helped or created something really worthwhile. I did some cooking at SkillWise and we made some fantastic stuff. The best part was being a part of a team and eating what we had created in the kitchen with all the utensils at our disposal. I started doing Food Technology during my senior years at high school. My Food Technology teacher saw that I had the potential to make something of myself and I believe that anyone can do the same, even if you have to garnish it!
Poetry Section
‘She’ By Alex Traub, age 14
She loves to say hi and gives lots of hugs I help her by playing and I read to her she teaches me to be patient be kind and to see things in a different view. She loves to help me with the chores she loves to eat her favourite balls (which she calls Malteasers) she adores watching her iPad and drawing she loves to watch Peppa Pig she loves to read books she loves to play in her play kitchen she loves to run and kick a ball she loves to play on the trampoline she uses her imagination a lot like she turns a box into a car she loves to have her favourite sauce – tomato sauce she has it on everything! She loves to play with her duplo, she loves to eat fish, lasagne, and dumplings. She lives with Down syndrome. It is caused by having 3 copies of chromosome 21. Down syndrome causes delayed physical growth. In New Zealand, 50 to 80 babies are born with Down syndrome each year. John Down was the one who discovered Down syndrome that is an unfortunate name because there’s nothing Down about it! This term, Down syndrome, wasn’t accepted till the 1970s. There is a World Down Syndrome Day on the 21st of March. A common feature is they have excess skin on the back of their neck and small ears. She is my sister She is Emma Congratulation to Alex who has won a book voucher from Time Out Books for this excellent poem! You can submit your entries to editor@nzdsa.org.nz. Poems can be on any subject and by anyone!
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Adult
Me & my job Amelia Eades, age 24
Amelia Eades
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I work at Crave café at the present. I work Thursday, Friday and Saturdays 1-4pm. I’ve been there for four years but this year is nearly five years. I work front of house, serving and greeting customers, running their coffees, juices, cold drinks, sometimes orders, iced coffees, all the jobs! I think Saturday is the busiest. Sometimes we’re very busy and sometimes between. Amandine is my boss there. My favourite thing is greeting people. It makes everyone smile. Thursdays, Fridays, and Saturdays I see it brings them lovely smiles. Today I was working at the Upstairs Gallery – Sammy Milne is the manager. I work setting up art group shows and exhibitions and helping out in the back of the storage room, and greeting as well. I worked for tourist jobs. It’s in Titirangi. I work there every Tuesday 10-1.
I’m part of ALL IS FOR ALL - the wonderful team. I like meeting new people. I did some modelling with them as well. I was working at the airport but it’s on hold at the moment because of the pandemic. So like Crave and the gallery, it’s all about tourists. I worked as an assistant in the Koru lounge, as a waitress, and front of house in the gallery. It’s all about greeting tourists! I don’t know if the airport is going to happen again. Having a job is very important. It’s how to live independently. I am flatting at the moment. I’ve made friends and work colleagues at work. I’ve got lots of friends at Recreate who come into Crave as well. I’m making new friends too.
Her & her job Sammy Milne, Chief Art Curator at The Upstairs Gallery (and Amelia’s boss)
When did you first start hiring Amelia? March 2020. I received an email with the most gorgeous picture of Amelia, how can one resist such a beautiful smile? Smart move! We set up a meeting and Amelia came in to speak with us. After meeting with Amelia and her parents it was very hard to find any reason why she could not join our tribe. What are her main duties with you? Amelia will help us with setting up for new installations once a month. She helps to pack down the artworks and gets them wrapped safely in bubble wrap. She will also help to write up all the price tags for the jewellery in our display cabinet. She will run some errands in the village by buying the milk for our coffee breaks and popping to the post shop to post off pieces that have been sold. Amelia will also man the desk when I need to pop out. This means that she greets visitors and makes sure that the gallery is safe while I am away for a few minutes. What does Amelia bring to Upstairs Gallery in terms of her skills/attributes? Amelia LOVES being in the gallery and is so wonderful with the visitors: friendly and chatty. She is so dedicated to any skill that she is tasked with and is great at asking for help when she is not sure of what to do. I love that she feels confident enough to ask for help. Amelia is hugely independent, she is a whizz with Auckland Transport, she knows exactly which train and bus to catch to any destination public transport scares me! She is also very reliable and considerate of letting us know if she is going to be away in advance. We absolutely love having Amelia as part of the gallery tribe. She is a ray of sunshine, with a cracking sense of humour and loves to be kept busy.
Have there been any challenges with her working there? I have had absolutely no challenges with Amelia working here at the gallery. Would you recommend hiring someone with Down syndrome? YES, YES, YES and YES! Amelia is so honest, and so REAL. In today’s world, where certain standards in beauty, the way we act, or how we should be are so unrealistic, it is humbling and grounding to have someone like Amelia. She makes us realise that ‘imperfection’, for want of a better word, is LIFE, nobody is perfect, we are all human and it’s ok to make mistakes and to be unique. Embrace your ‘weird’, and I mean that in the best sense of the word. Live, laugh, and love! What would you say to any employers who are nervous about hiring someone with Down syndrome or another intellectual disability? Patience is everything. We all need to slow down; let someone with a disability make you see how we should really be! I think it’s only because people are nervous of the unknown that they are reluctant to hire someone with Down syndrome or any disability. I have found that working with Amelia has made me a better person; it has taught me to be patient and to not take life so damn seriously.
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Senior
Colin next to all of his medals
Special Olympics trailblazer Colin Bailey still going strong after 40 years By Zoe Braithwaite, Special Olympics New Zealand
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Colin Bailey continues to be a role model and trailblazer for people with Down syndrome, 40 years after he became New Zealand’s first ever Special Olympics athlete. A Hutt Valley athlete, Colin, who has attended every Special Olympics National Summer Games since its inception in 1985, has many stories to tell. In December, Colin will again be attending the Freemasons New Zealand Special Olympics National Summer Games, his tenth games, where he will be competing alongside 1,200 athletes in ten sports across eight venues in Hamilton. “Colin is an amazing person in his own right, but he holds a very special place in our community,” says Carolyn Young, Chief Executive Officer of Special Olympics New Zealand. “Colin and the other pioneers showed the way for thousands of athletes who have followed his great example, so we are extremely grateful to him and those supporting him.” Colin’s Special Olympics journey started in 1982, when he was spotted by visiting American doctor Dottie Fitzgerald. They
encouraged the talented young swimmer and his coach Grant Quinn to attend the Special Olympics World Summer Games in Baton Rouge the following year, as well as starting a New Zealand branch. That fateful meeting changed both of their lives forever, and one year later Quinn, Colin and his three team-mates found themselves on their maiden plane trip to the United States. Colin, who recently turned 60, says he best remembers the stunned crowd in Louisiana, as the small, but boisterous Kiwi contingent burst into a haka at the closing ceremony. More importantly, the young swimmer made an even bigger impression in the pool, getting a special tribute from Special Olympics founder Eunice Kennedy Shriver, sister of John F Kennedy, as well as praise from four-time Olympic champion John Naber who could see no flaw in Colin’s impeccable technique. Colin and his team may have returned with a bagful of medals, however his fondest memories are not from the pool, but from making new friends from all around the world.
Top: Colin competing at the 2017 National Summer Games in Wellington Bottom: Four founding athletes of SONZ in 1983. From left Peter Spijkerman, Colin Bailey, Brent Busy, Gordon Llewellyn
“And that’s what it’s all about for Colin. Having fun and meeting people,” says Mum, Lee, who has been poolside for longer than she can remember. Colin continued to attend every National Summer Games since 1985 and has suggested his Mum needs a bigger house for all his trophies and ribbons! After decades in the pool, Colin swapped his swimming goggles for a ten-pin bowling ball. “I wonder if that was to get away from his Mum, because I was the swimming coordinator,” laughs Lee. Whether in the pool or the bowling alley, Special Olympics is all about camaraderie, especially for Colin. While many people with disabilities mingle with peers at school, residential care, or at day activities, Colin worked most of his adult life at Hirepool.
“So Special Olympics was the only way for him to meet his peers and make new friends,” says Lee, who adds that COVID-19 restrictions had been hard on her son, with Special Olympics training on hold for the past six weeks. Once training resumes, Colin and his Hutt Valley team will start preparing for the National Summer Games in Hamilton, starting on December 8. “He is not as good in bowling as he was at swimming, but he doesn’t care,” says his mother. “As long as he has fun and can meet new people.”
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President’s Pen By Kim Porthouse
Hi everyone, It’s hard to believe we are a quarter of the way through 2022 already and World Down Syndrome Day (WDSD) has already been and gone. It was great to see another good turnout for our WDSD online event, the ‘Big Connect’, thanks to all who joined us. I would also like to thank Zandra and the team for putting together such a great event. The theme for WDSD was ‘Inclusion means’. Inclusion is fundamental to achieving a ‘Good Life’ and the wonderful panel spoke across four areas - Human Rights, Employment, Sports, and Arts and Education. Zandra’s article has more information about the members of the panel. There was a huge amount of expertise involved and I sincerely thank each and every one of them for their time and knowledge. The event included an opportunity to join the conversation in break-out groups for each subject. From the feedback received, it was obvious there were some healthy and enthusiastic conversations in each group. The following week, another online event was held to launch our newest resource, Down Syndrome and Autism – Dual Diagnosis. This was another wellattended event, as there is clearly a need for information around dual diagnosis, and it was very interesting to learn that around 20% of individuals with Down syndrome have a dual diagnosis of Autism Spectrum Disorder (ASD) which is more than I had realised. As I'm sure some of you already know. my son Brendon has a dual diagnosis of Down syndrome and Autism, and from my own experience it can sometimes feel a lonely world when your child doesn't seem to be quite the same as their peers
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with Down syndrome, especially when it comes to communication, socialisation, and independence. For the most part, life with Brendon is pretty easy-going, with simple pleasures and plenty of happiness, but I also know for me there have been times when there have been additional episodes of grief that have snuck up on me, with life sometimes feeling like my child has a particularly hard and vulnerable road to travel. I also know from experience that meeting other parents of children/ adults who also have a dual diagnosis can be such a relief. There is just something comforting in knowing you are not on a lonely road and in knowing that someone else has that same level of understanding and really gets it. There is often so much to learn from each other, and being on a shared journey can be so empowering. At the end of the launch when there was an opportunity to chat amongst attendees, it was clear that parents would welcome more opportunities to come together. Because I know how important connecting with other parents is, I am excited that a further session was organised and the idea of a regular get-together has been discussed. If you missed the original event but think that you would like to be a part of this online forum and are interested in joining future zooms, then please email Zandra at neo@nzdsa.org.nz and ask her to include you in any emails for the link to join in. Also, keep your eye on the E-news the NZDSA sends out where future meetings will also be advertised. I really think this could be a great space for those of us on the dual diagnosis journey to be a part of wonderfully supportive group.
Brendan & Kim
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Neo Notes By Zandra Vaccarino
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Kia ora, In 2021, I began a series that focussed on answering a frequently asked question “What does the NZDSA do?” In the March 2021 edition of CHAT 21, the focus was on systemic advocacy work as a means to influence changes in policy and processes so that people with Down syndrome can benefit and enjoy more equitable access to the same rights as all New Zealanders. In the July 2021 edition, I shared that the NZDSA receives no government funding, so securing financial support is essential so that we can continue to deliver our core information, support, and systemic advocacy work as well as all the additional projects we undertake. In the October 2021 edition, I shared that a more visible task is to celebrate people with Down syndrome, the incredible contributions of our regional groups, and all our volunteers. In this edition of CHAT 21, I thought I would focus on the NZDSA’s commitment to raising awareness of Down syndrome. World Down Syndrome Day (WDSD) is a wonderful opportunity to raise awareness in the wider community. This year, Down Syndrome International chose ‘Inclusion Means’ as the theme for WDSD and it was the ideal opportunity to raise awareness of the human rights of all people with Down syndrome to fully participate in and contribute to their community. It was also an opportunity to discuss the fact that by signing the UN Convention on the Rights of Persons with Disabilities (UNCRPD), New Zealand has obligations to uphold the intent of the UNCRPD. However, this has not translated into full community participation, or the privileges and rights other Kiwi citizens may take for granted. The NZDSA utilised social media, print media, radio, and television to share our
key messages for WDSD. Lily Harper and I were interviewed by John Campbell from TVNZ’s Breakfast, and Lily was an inspiring advocate to share why inclusion is so important for people with Down syndrome. The NZDSA has other key awareness c a m p a i g n s i n o u r a n n u a l c a l e n d a r, including Volunteer Day and Volunteer We e k , D ow n Sy n d ro m e Awa re n e ss Month, and the International Day of People with Disabilities. In addition, the NZDSA identifies issues that impact on our community and will respond to these issues to raise awareness of the impact that they have or will have on our community. The NZDSA believes that raising awareness in the wider community is essential if we want to bring about social change. Raising awareness addresses myths, changes perceptions, provides opportunities to educate, develops greater supporters, and calls for actions which will create change and transform our communities and society. In this edition of CHAT 21, you can read more about all the range of ways that our communities across New Zealand contributed to raising awareness of Down syndrome. Big Connect O n ce a g a i n , COV I D -1 9 re st r i c t i o n s stopped the NZDSA and regional Down syndrome groups from hosting their usual WDSD celebrations, but we still wanted the community to gather together to celebrate, so the NZDSA hosted another mega-online community event. The Big Connect was opened by the Minister for Disability Issues, the Honourable
Lily Harper and Zandra Vaccarino afer the Breakfast show interview
Carmel Sepuloni, who then handed the virtual podium to the President of Down Syndrome International, Bridget Snedden, who passed over to Paula Tesoriero, the Disability Rights Commissioner. The opening was followed by a thoughtprovoking and inspiring discussion on inclusion by expert panel members. • Bridget Sneddon – President of DSI • Paula Tesoriero – Disability Rights Commissioner of NZ • Brian Coffey – Director Office for Disability Issues • Trish Grant – Director of Advocacy IHC • Dr Maree Kirk – President Bay of Plenty DSA and Director, STPDS NZ • Dr Jude Mac Arthur – Senior Lecturer school of Critical Studies in Education, UoA • Duncan Armstrong – STRIVE member and performing artist • Jonathan Mosen – Chief executive Officer, Workbridge • Georgina Kirk – Director and Organisational Psychologist, kindred and a sibling • Andre Oswin – STRIVE member and self-advocate • Carlos Biggemann – Recipient of the 2021 Attitude Creative Award • And Libby Hunsdale – Model and actor
These are a few of the responses to the question ‘what does inclusion mean?’ “Inclusion to me is being able to be free to do whatever you like, no matter what your disability is. When I was included on the set of the movie Poppy, it felt really good because I felt more independent and I think giving people those sorts of opportunities is important for inclusion.” Libby Hunsdale “Inclusion to me means having a paid job just like everyone else” Andrew Oswin. If you missed this event, you can view the recording on the NZDSA website. Congratulations to Libby Hunsdale On World Down Syndrome Day and at the Big Connect event we heard that Libby Hunsdale was awarded the Best Actress in a Narrative Feature at the Socially Relevant Film Festival in New York. This is not the first time Libby was recognised for her leading role in Poppy, but it was wonderful to celebrate this international recognition with her on World Down Syndrome Day. Linda Niccol, the writer and director also shared the Best Narrative Feature award with another director. Congratulations to Libby and Linda for this wonderful achievement.
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The Big Connect, World Down Syndrome Day 2022
NZDSA launches a New Resource and Support Group The NZDSA was pleased to host an online launch of the “Down syndrome and Autism Spectrum Disorder (ASD)” digital resource as part of our World Down Syndrome Day celebrations. This resource is an introduction to the diagnosis of dual disability: Down syndrome and Autism Spectrum Disorder. The NZDSA would like to thank former committee member Geraldine Whatnell who is also the Nurse Practitioner Mental Health and Addictions Service at Palmerston North Hospital for her willingness to collaborate with the NZDSA to produce this resource. This resource was developed in response to the request to host more workshops but this was not possible in the pandemic environment. We recorded a workshop which means anyone in the country can now access this online. This resource will be available on our website. The NZDSA will also be hosting a quarterly online support group for parents and whānau who have a family member with the dual diagnosis of Down syndrome and Autism Spectrum Disorder. We will advertise these events in our E-news and via social media, or you can email neo@ nzdsa.org.nz and I will add your name to the mailing list.
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Wellbeing Series We have also hosted two more online episodes in the Wellbeing series. The episodes are Coping with Change and Mindfulness. The Coping with Change episode offers an understanding of how change impacts on us and how to adjust to life after changes. The Mindfulness episode explores how to use different techniques to stay in the present moment and improve our wellbeing The presenter of both episodes is Debbie Buddle, a Wellness Practitioner specialising in Physical and Mental Wellness through Nutrition and Counselling. These episodes will also be available on the NZDSA website. Down for Love In the next few months, you will be seeing a few familiar faces on your television as Down For Love, a primetime television series for TVNZ 2 produced by Attitude TV goes to air. Down for Love will focus on people living with Down syndrome who are on a quest for romance. We look forward to featuring the participants in a future edition of CHAT 21.
Changes in the Disability Sector I am sure you have all been following the changes associated with the Disability System Transformation and the national rollout of Enabling Good Lives across Aotearoa, as well as the setting up a new Ministry for Disabled People. This quarter we have seen the Highest Needs Review and consultation on the draft Physical Restraint Rules and Guidelines in the education sector. We h a ve a l s o s e e n t h e D i s a b i l i t y Commissioner calling for an Inquiry into the Support of Disabled People and Whānau During the Omicron Outbreak. All of these changes, consultations, and the enquiry represent a significant step and a positive change for upholding the rights of disabled New Zealanders and their whānau. The NZDSA is aware that our members will have questions about the establishment of the New Ministry for Disabled People, Disability System Transformation, the national rollout of Enabling Good Lives, and the outcome of the Education consultations, so the NZDSA will be sharing news with you via E-news and CHAT 21. The NZDSA will continue to advocate for people with Down syndrome and their whānau through our established alliances and networks.
Catholic Women’s League of Aotearoa NZ The NZDSA was delighted when the Catholic Women’s League of Aotearoa NZ (CWLA) selected the NZDSA for their 2021 Mission At Home Appeal. Throughout 2021 members of CWLA partnered with the NZDSA to raise awareness, promote the work of the NZDSA and fundraise for the 2022 Youth Development Camp. I was fortunate to meet a number of members of CWLA at their annual CWLA National Conference and to learn more about the variety of ways the various branches promoted awareness and fundraised for the NZDSA. In January we heard that CWLA raised just over $10 000.00 which will be a significant contribution towards the costs of hosting our annual Youth Development camp. I would like to extend our sincere thanks to everyone involved in raising awareness and supporting the 2021 Mission at Home Appeal. I would like to thank Alex Snedden for all his support of the 2021 Mission At Home Appeal as well as other members of the NZDSA who participated in the activities their local branches organised. I am sure you will join me in thanking all the members of CWLA for their support. Hei konei rā Zandra
Zandra with members of the Catholic Women’s League of Aotearoa’s National Conference
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Down for Love interview Robyn Paterson As the Down syndrome community prepares for the exciting premiere of Down for Love, a show all about people living with Down syndrome who are on a quest for romance, I sat down with the Series Producer – and my sister - Robyn Paterson.
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First of all – what is Down for Love? It’s a TV series that will follow six people living with Down syndrome on their quest for romance. At its heart it’s about diversity, and love. People with Down syndrome need to be treated and respected equally. Our search for love is universal – no matter who we are. What is your role in the production? I am the Series Producer which means I oversee the series. I’ve brought a team on board who have been doing an excellent job, and then I supervise it creatively and otherwise. I’m working alongside Dan Buckingham who is the Executive Producer (and also the CEO of Attitude). How did you get involved in Attitude yourself? I ’d j u st m ove d f ro m We l l i n g to n to Auckland having finished work on my feature documentary, Finding Mercy, and was looking to do some directing work up here. I did about a year freelancing for Attitude then worked on some other projects, but always maintained a connection with Attitude. When COVID-19
struck at the start of 2020 I was in the middle of directing an episode. There was a sudden shift for the whole industry - we had to work out how we could carry on delivering episodes and relevant content under those circumstances. I took on some of that task for Attitude and ended up as Series Producer. When the idea for Down for Love came along, it made sense to take that on too. What do you like about working for Attitude? I like the kaupapa of Attitude as a disabilityled organisation, and an organisation that puts disability first; putting people in the lead of their own stories as participants rather than telling stories about people living with a disability. When I work in any capacity, I always like what I do to feel like it has meaning and purpose and a positive impact in some way, shape or form. And that can vary – it doesn’t mean I don’t work in forms that are pure entertainment - but it is important to me that what I do has integrity. There’s a purpose in putting it out there into the world. Attitude is a really nice space to work in in that regard because it’s documentary in style, we do full half-hours so there’s time to do good story-telling, and it has value in the community.
Where did the idea for Down for Love come from? It was really organic. Robyn Scott-Vincent who runs the company had an idea to do something in the realm of dating, and then the concept developed over time as a collaboration of the creatives involved. We were interested in that universal experience of love and how much everyone needs and desires connection – whether that’s romantic love or close friendship or whatever that may turn out to be. There’s a misconception that those living with an intellectual disability don’t have the same needs or wants or desires, which of course isn’t true. We were looking at doing something that was fun and uplifting, but also educates an audience along the way. Has COVID-19 been a factor in much of the production? When the concept was developed, we were focused on Down syndrome specifically because of 2021 coming up and were investigating all kinds of ways we could do content relating to Down syndrome. We also did the ‘T21’ digital series, and we incorporated a considerable amount of Down syndrome content into our 2021 series. Down for Love was the biggest thing we had planned, and it was originally scheduled to air in 2021, but due to COVID-19 that has been pushed back into 2022.
In terms of filming, we were actually really lucky as the vast majority of our filming was done when there was no COVID of any type in the community in New Zealand. We as a country have been incredibly lucky and also had great leadership in that regard and so we’ve been able to live relatively COVID-free for two years while the rest of the world was facing it. We get asked this question a lot by international groups as this was launched at MIPCOM which is the major international market for television. It’s only our final two episodes that have been filmed during a different phase, post-Omicron, and so we’ve had to look at those really differently. We film under Screen Safe Red Protocol guidelines, our crew have firm guidelines, and our final dates after the lockdown hiatus have been filmed under strict protocols. Where did the name Down for Love come from? We wanted to reference Down syndrome and also describe what the show was in a fun but respectful way. We didn’t want to go with a sensational title like you sometimes see. Attitude is a disabilityled organisation and getting language right is really important to us. The title felt appropriate and fun, - many of our participants have described themselves as being “down for love”.
The stars of Down for Love
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Robyn Paterson with little sister Sarah Paterson-Hamlin, little brother Keith Paterson, and her nephews, Ezra and Lonan
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What’s been the most challenging part of the production so far? The first episode of any brand new series is always enormously challenging because there’s no template for it. You might have references you’re inspired by, but you’re carving new territory. The team goes out and films and gets certain things, but it’s always in the edit suite of the first episode of a new series that the real work happens. That can be a really challenging process for everyone involved: series producer, director, and editor. There are a lot of things to get right with this one that were really important to us to get right. There’s the balance of being a TV show that has to work for a mainstream television audience, but it was important to us that it also worked for the community, that it maintained its integrity, that it maintained Attitude’s kaupapa of being disabilityled and people in control of their own narrative, and that it had an educational purpose at the same time as being a good show to watch. I would say apart from Omicron that is definitely the most challenging part – the edit of the first episode. We’re incredibly pleased with the result though and how it’s come together. We’re really proud of the show. How have the community been involved in the process? NZDSA has been directly involved; they’ve watched episodes and given us feedback and been more actively involved in the consultation process, including helping to find keen participants. Zandra has been amazing, we’ve really valued her input and the consultation with her has been
really valuable. We had several good conversations ahead of filming and she was great at talking through things we should be mindful of. Then there are the many organisations we’ve reached out to far and wide - such as UpsideDowns who’ve been really helpful. Any organisation that’s related to Down syndrome and intellectual disability that we can think of including, private residential organisations, activity-based services, workplaces that employ people with disabilities... We’ve also engaged with the community on social media, which is where the regional DSAs have supported us too with posts and casting calls. We worked with a lot of Duty-of-Care protocols, as we didn’t want anyone to feel under any undue pressure. Being on camera can be intense and we wanted to make sure people felt comfortable and were able to have these experiences and enjoy them for what they were. So in terms of our timing and how we worked, we always had that in mind. We made counselling available to participants if they should want it either during or after filming. No one’s taken it up yet but it has been made clear that it is on offer. We always make sure that where possible somebody else is with the director so they can be keeping an eye on people’s wellbeing throughout, and we’ve always made sure participants have the choice to travel with a companion: a parent or sibling or friend. So Duty-of-Care has always been a big consideration throughout.
How do you match the dates? What are you looking for? This comes down to our wonderful researchers. We’ve had Justin Scott for the first part of the series who also works as a director for the main Attitude series and who directed the T21 digital series. It turns out Justin has excellent matchmaking instincts which we feel he should capitalise on somehow! For the second part of the series we’ve had Daniella Baldock who’s a fantastic researcher as well, originally from the UK. Both of them have done an amazing job. And then in the later stages I’m involved in that process as well. We pre-interview people on zoom so we’re able to look at those interviews and make decisions from there, and have a chat about who might match well with who. What we’re keen to know is what they’re looking for in a partner, what level of seriousness they’re wanting in a relationship, and what their interests are. Like you would with any matching, that’s what we’re looking for. Also, one of the things I really wanted to look at in this series is what people are doing already in their efforts to connect and find people, and to work with them along those lines as well. So it’s providing a little bit of help more than artificially creating a connection. We’ve been working New Zealand-wide. We’ve tried to find matches close to home when we can, but it’s not always possible, and sometimes that’s actually led to some really great experiences. For those outside of main centres, it can be harder to meet a wider circle of people. Not everyone in the show necessarily has Down syndrome is that right? No. All of our main participants are living with Down syndrome, that’s key as it’s a show that’s based in the world of Down syndrome, but it’s open in terms of people that they date. All of them are living with an intellectual disability but not necessarily Down syndrome. So we have a whole spectrum in there amongst our dates from Global Developmental Delay to Williams’ syndrome and others. H ave t h e re b e e n s o m e s u cce s s f u l matches? There have been more successful matches than we could have imagined! I would say our researcher may have a new career
as a matchmaker. Yes, we’ve had a lot of successful matches and a lot of great connections between people even if they haven’t gone on to be a long-term romantic match. That’s all I’ll say! What do you think the wider public will enjoy the most about watching it? I think they will enjoy getting to know the people involved. One of the things that was really important to us in doing this show was to show the diversity within Down syndrome. There’s that misconception within disability that people get lumped into categories. You have references to people living with Down syndrome as though that’s just one thing. But of course there’s a huge diversity within Down syndrome just as there is anywhere, and one of the things we wanted to show was different personalities - and that really comes through. There are some amazing people living extraordinary lives and I think that’s the thing we’ve taken the most pleasure in, is really bringing that to the screen and it’s wonderful to watch. What do you hope comes across to those watching it? I really hope that people come away with a better understanding of Down syndrome and that they may be more aware of people in their communities living with Down syndrome and other intellectual disabilities - that they may be more cognisant of their rights and needs. That there are certain things in life that are universal, and we are more similar than we are different. What will Chat21 readers enjoy about it? I hope that people within the community will enjoy seeing themselves on screen in a positive way, and will enjoy relating to the people that they do see, and that it might inspire them to follow their own love journeys. Will there be more than one season? We very much hope so! We can’t confirm that yet but we’d love to think so Finally, why do you think we’ve both e n d e d u p wo r k i n g w i t h t h e D ow n syndrome community? I really don’t know, but I would say it’s a wonderful coincidence! Down for Love premiered on the 9 May 2022 at 8:30pm on TV2 and will be available to watch on TVNZ on demand.
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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
Carey-Ann Morrison 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
Linda 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 Kathryn Sadgrove Northland Coordinator 0800 693 724 ksadgrove@xtra.co.nz
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NZDSA Socials 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 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. 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.
NZDSA Notices The NZDSA has 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 co m m u n i t y. P l e a s e e m a i l L i n d a a t na@nzdsa.org.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.
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 We still have Numicon kits available if you are interested in loaning one. 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 Linda 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 • The Catholic Women’s League of Aotearoa New Zealand
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World Down syndrome day across the regions Image 1: Inclusion means Thomas being the best Uncle ever Image 2: Julian with Charlie Image 3: Nivan Forsyth on WDSD Image 4: The Balsalubre family celebrated WDSD with a picnic at the Whangārei Town Basin proudly wearing their t-shirts on a 5km walk around the Hatea loop to raise awareness
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Image 5: Belle and Cooper Bulled celebrate WDSD Image 6: Alicia’s lucky few tattoo she got on WDSD Image 7: Chey and Dayna on WDSD Image 8: Max Reid celebrates WDSD with his family and their socks Image 9: Poppy Paul on WDSD Image 10: William with his tiger facepaint
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A huge thank you for your fundraising efforts! Image 1: Chey’s classmates rock their socks at Kenakena School Image 2: Hamish from Hungry Hamish presenting Zandra Vaccarino a generous donation after his WDSD promo Image 3: A big thank you to St Patrick’s Inglewood, Norfolk, and Frankley schools in Taranaki for their celebrations and fundraisers for Taranaki DSA on WDSD Image 4: Josh Hastie, Casebrook Challenges — odd sock day Image 5: One of our Auckland primary schools takes part in Rock Your Socks day