Chat 21 Spring 2023

COMMUNICATION

|

HOLISTIC

|

ADVOCACY

ISSN 2744-4635 Issue 95. Spring, 2023.

|

TAONGA

Spring, 2023.

Editorial – Spring 2023

By Sarah Paterson-Hamlin

Welcome to our RAINBOW edition! Now that we’re in full colour, as you can see, we’ve had a bit of a spring clean of our design and are thrilled to bring you our new look! Congratulations and a great big thank you to Dan and Taylor at You Are Here for their incredible mahi on this.

We’ve brought all the colour in time for Spring with stories in festive red, ocean blue, banana yellow, cloudy white, gardening green, electoral orange, Rose-y pink, educational purple, and even winning bronze! Rainbows themselves have so many meanings as well of course, and we bring you insights into autistic meltdowns and LGBTQ+ communities, as well as colourful glimpses into what’s happening at UpsideDowns and in fashionable Wellington.

Andrew Oswin brings us a wealth of stories and updates, and Zandra catches us up on this Down Syndrome Awareness Month’s virtual conference.

Plus, there’s all your favourites – on the socials, around the world, IHC Library, President’s Pen, and NEO Notes. For the first time, we even have a couple of advertisements! Now there’s a great idea for a business you know…

As I write, we still don’t quite know what the new Government is going to look like (and those images of the seats in Parliament look a bit like rainbows too with the success of many minor parties!). What we do know, is that this community will be there to advocate strongly to our newly incoming Ministers and MPs for the rights of people with Down syndrome, their whānau, and tangata whaikaha (disabled people) across Aotearoa.

Have a wonderful rest of your spring and a fabulous festive season - see you in 2024!

Dr Sarah Paterson-Hamlin Editor

PAGE 2

Spring, 2023.

Contents

Rainbow — Fashion in the Capital

27

Ministry Of Disabled People Meeting 2023

29

The Rose Award presented to…

30

Looking After Our Mental Health

32

NEO Notes

34

12

Max’s Planter Boxes

37

Trip to Rarotonga

14

Rainbow Love

16

The Rainbow Spectrum — What is a Meltdown?

38

What A Unforgetaball Night!

19

Swimming in the Special Olympics with Jesse Williams

40

The arrival of Cumulus: an anthology of skies

20

Playing the Rainbow

42

Strive & Step Up Training Funshop

IHC Library

44

22

Contact Directory

46

Blue

24

Notices

47

President’s Pen

26

All Aboard!

48

On the Socials

4

Around the World

5

That’s a wrap of the 3rd Virtual Conference!

6

Christmas 2023: Gifts that matter

9

Making the 2023 Elections Accessible

10

A little about The Fair Food Crew

PAGE 3

On the Socials Instagram: D*List conducts post-election survey of disabled people The D*List has conducted a poll asking the disabilities community how they felt after October’s general election. The results didn’t paint a very hopeful picture as you can see, but Olivia Shivas, Editor at the D*List, has some words of encouragement if some of the National, ACT, or NZ First policies around disabilities (or lack thereof) are getting you down. “No matter how you’re feeling right now, know that you are valuable to our community. We all have something to contribute to help us all thrive and I hope The D*List can be a space you feel validated and seen by people who experience life in similar ways.”

TikTok: 60 second questions with Manaia A local influencer is on the rise! Check out this super cute interview over on the TikTok @haupiuasteventon with little Manaia and her Māma, as well as loads of other cool videos. In 60 seconds, this dynamic duo cover all three of our official languages in Aotearoa – pretty impressive! They start with favourite colours which is right on theme for our Rainbow Spring Edition!

Instagram/Podcasts: The Lucky Few This trio of trisomy Mums in the States have shared their latest episodes on Instagram and anywhere you get your podcasts. Episode 226 came out in September and involves the ladies discussing our very own Down For Love! Season 1 has recently premiered on Netflix, bringing some of our NZ Down syndrome community stars to an international audience. The season was produced by my sister, Robyn Paterson, and in an upcoming episode, she’ll be speaking further with the hosts about the experience.

PAGE 4

Around the World

Spain: World Down Syndrome Awards 2023 Over 200 people and groups were nominated for the first-ever World Down Syndrome Awards this year, organised by Down Syndrome International. The five winners were from Spain, France, Canada, and Australia. One of two winners from Spain was La Casa de Carlota – a design studio that includes people with intellectual disabilities on their team. La Casa de Carlota has recognised that acknowledging and embracing how people think differently can be a real strength and in doing so have won awards, written a book, spoken at the UN, and now won a World Down Syndrome Award!

Let’s get a Kiwi winner up there next year!

Italy: Capital of Italian Fashion celebrates young people with Down syndrome Cellotape Magazine announced the publication this (Southern Hemisphere) spring of a unique fashion forward, socially inclusive story featuring models with Down syndrome. The unique shoot took place last month in Milan’s elegant central park, Parco Sempione, as young people with Down syndrome donned a mix of designer and high street fashion to send out the message that fashion is for everyone.

The shoot, brainchild of celebrity stylist Michael Dye, and brilliantly photographed by Luca Maresca, is the result of a collaboration between Cellotape Magazine, a contemporary digital fashion and lifestyle publication that focuses on inclusivity, and Locanda alla Mano, a Milanese based project that aims to support young people with Down syndrome enter the workforce.

Mexico: Mum and son escape hungry bear Santiago, a teenager with Down syndrome from Mexico City, was celebrating his fifteenth birthday with his Mum, Silvia, with a picnic at Chipinque Park. Terrifyingly, a black bear decided they wanted to be invited as well!

Fortunately, Santiago and his Mum knew what kind of bear they were dealing with and how to react, having practiced at home beforehand. “We are going to play a game where we cover Santiago’s eyes and we are going to act like statues,” Silvia recalled rehearsing the plan.

And that is exactly what they did: Santiago remained motionless, even though “the bear was very close to us, we heard him as he growled, as he ate, you could smell the bear. It was really very very close.” Asked if he had been scared, Santiago, who attends middle school in Mexico City, said “yes, a lot.”

PAGE 5

Spring, 2023.

That’s a wrap of the 3rd Virtual Conference!

By Zandra Vaccarino

The 3rd Virtual Conference has come to a close, and the NZDSA has hosted an incredible event. Almost 400 households or offices participated in one or more of the 21 events that were held during the conference. The 34 speakers collectively hosted a staggering 1,800 minutes of webinars, Q&A sessions, and social gatherings.

We would like to express our deepest gratitude to all the individuals who contributed to the success of this event.

Firstly, we would like to thank all our amazing presenters who generously shared their knowledge, wisdom, skills, and experience. We are also grateful to the participants who registered and attended the session and shared wisdom from lived experience.

I would also like to extend my appreciation to the team at National Office, Dan, Taylor, and Jess, for their hard work behind the scenes. This included creating amazing artwork, setting up Zoom Events, posting notices on Facebook, Instagram, the NZDSA website, and Enews.

Lastly, we are grateful that technology enables members of the Down syndrome community to connect, regardless of their location.

The focus of this year’s Conference was centred on DSi's WDSD theme: “With Us Not For Us”. The conference also delved into the International campaign for the right to legal capacity and supported decision-making and covered various issues affecting different ages and stages of life.

We aim to continue offering such events, but as we are not funded by the Government, we rely on donations to keep our Association going. If you found value in the sessions and would like to show your support, we welcome any one-off donations via the NZDSA's website

The following is a summary of the various sessions.

• Getting to the Good Life – The Importance of Having a Vision Bridget Snedden emphasised the importance of having a clear vision to lead a fulfilling life. She emphasised that happiness is not the ultimate goal, but rather a byproduct of achieving one's vision. This, in turn, requires a lot of thoughtful planning and action. It is important to understand that every decision we make has consequences, and maintaining a clear vision is crucial to making the right choices.

• A rights-based approach to inclusion for all students at school Trish Grant provided an overview of the Right to Education and what this means in reality. She also discussed personal agency and supported decision-making in education and ended with an update on IHC’s litigation.

• What might be better – Holding a Vision for a Personally Meaningful Future Lorna Sullivan's speech was truly inspiring, highlighting the essential role parents play in creating and maintaining a vision for their child.

She urged parents to reflect regularly on their decisions and assess whether they are getting closer or further away from their vision. Lorna also shared a number of strategies for creating a vision, emphasising that "money doesn't think."

It is the parents’ responsibility to create a vision for their child, and it is important to take the time and effort needed to do so. If you're unsure where to begin, start with what you don't want for your child.

PAGE 6

Spring, 2023.

• Career planning and bringing your skills to the workplace Georgina Kirk and Carly Drury provided a brief introduction into the work that Kindred and the New Zealand Down Syndrome Association have done to collate research and resources to build resources for our Kiwi jobseekers with Down syndrome and support prospective employers to increase their understanding of the benefits of hiring someone with Down syndrome.

The session covered two important resources: the Career Planning Workbook for Jobseekers and the Employer Guide to Hiring Someone with Down syndrome.

• STRIVE and STEP-UP The self-advocates shared the journey of STRIVE and the meaning of “With Us Not For Us” They explained how they collaborate to advocate for key issues.

• Navigating Work & Income Karen Barber provided an overview of available financial supports and demonstrated how to navigate the Work and Income website.

• What does Helpful supported decision-making look like?

Carolyn Stobbs and Lizzie Waring emphasised that supporting decision-making requires providing opportunities for people to make decisions.

Decision-making is like a muscle that needs to be exercised, so we need to give individuals the chance to practice and make mistakes, as it can be a learning opportunity. It is also important to identify personal preferences and useful supports and processes for decision-making.

Interestingly, research shows that when disabled people ask for support to make decisions, it is seen as a weakness, and they are not regarded as independent. However, if I asked questions or sought support, I would be rated as having high interdependence skills and using good processing strategies for decision-making.

• Healthy Bowels and Bladder This talk was all about wees and poos. Lisa Smith discussed the importance of healthy bowels and bladder and shared several tips and strategies to maintain them. She focused on recognizing the signs of unhealthy bowels and bladder and emphasised the importance of seeking help early if any problems arise.

• Early intervention – Practical suggestions to support your child’s communication development Lee Bennetts emphasised the importance of accessing early intervention and maximising available resources to support communication development, which is essential for building relationships. She shared valuable tips and strategies for communication development.

• Assistive equipment to support independence Kate Spear discussed different types of assistive equipment that can help people with Down syndrome engage in meaningful daily activities of living as independently as possible. She provided a comprehensive overview of available equipment and discussed potential funding options.

PAGE 7

Spring, 2023.

• Exploring the need for Adult Legal Guardianship Iris Reuvecamp explained the meaning of guardianship which included duties, powers, rights and responsibilities. She also discussed the United Nations Convention on the Rights of Persons with Disabilities and emphasised the importance of supported decision-making and discussed alternative options to consider, such as Enduring Power of Attorney, Joint Signatories on bank accounts, and Property Administration Order. She also emphasised the importance of supporting supported decision-making.

• Bridging Generations and Perspectives Summer Findlay shared how her experience as SibLeader in Parent to Parents’s Sibsupport programme has created an environment where she can genuinely say, “My brother and I are best friends now”. She also provided an overview of the SibSupport programme.

• It’s me, Alfie – playroom to podium!

Jane Linn shared the journey of celebrating the birth of Alfie, and providing him with opportunities so that he has control of his own life. He is involved with his own decision-making about important aspects of his life to encourage his independence. They shared Alfie’s Table Tennis journey which started early - before he could sit up or walk or talk. Alfie Linn shared about winning bronze and silver medals at the Virtus Global Games 2023.

• Exploring Supported Decision-Making Erika Butters provided an overview of supported decision-making. Carey-Ann Morrison and Peter Allen discussed how supported decision-making is upheld in the Enabling Good Lives’ approach.

Apryl Cadman provided an overview of services available through Community Law. • Down Syndrome Clinic to You (DSC2U) Dr Brian Skotko shared the story behind the creation of DSC2U and explained what it is and how it works. He also presented statistics on how effective it is according to parents and medical professionals. To conclude, he shared how our members can access expert medical information instantly.

• Constipation Lisa Smith gave an overview of constipation and shared both the common and subtle signs of constipation. She discussed the impact of chronic constipation and provided tips for managing constipation, which included looking at incorporating toilet gym. She emphasised that success requires time and effort, but believes that you can work towards creating a healthy bowel.

• Dive Beneath the Label of Coeliac Disease In this session, Lisa Jury provided a comprehensive discussion about coeliac disease, which covered its symptoms, diagnosis, management, issues related to cross-contamination, as well as education and support. Additionally, she talked about the various types of assistance and information that Coeliac New Zealand offers.

• Empowering your Child’s Journey: The Crucial Role of Speech-Language Therapy For a Fulfilling Life During the presentation, Victoria Smith gave an overview of Upsidedowns Education Trust, their services and how to access their supports. Polly Newton talked about the importance of speechlanguage therapy, explaining what communication is and focusing on the communication skills specifically relevant to children with Down syndrome. She discussed which areas to focus on for different age groups and also shared some valuable resources.

• Flexible Funding Options Claire Ryan gave an overview of various funding streams, emphasised the importance of an individualised plan, and advised to include a brief background story when making claims.

• Whānau working with Health Care providers to achieve Best Outcomes During this session, Dr Rosemary Marks discussed e f fe c t i ve co m m u n i c at i o n st rate g i e s w i t h healthcare providers to help patients achieve optimal health outcomes. She also provided information on the essential health checkups for various age groups. Additionally, Rosemary gave an update on the Down Syndrome Clinical Guidance project.

PAGE 8

Spring, 2023.

Red

Christmas 2023: Gifts that matter

The jolly red man and his elves are getting busy as we speak for the upcoming Christmas season! If you’re looking for the perfect gift for friends, whānau, teachers, support workers, colleagues, or to have on hand for one of those last-minute Christmas visitors, then the Auckland Down Syndrome Association has you covered.

Check out their full guide on their website at www.adsa.org.nz, and enjoy a couple of tasters below.

christmas 2023 gifts that matter GIFTING OPTIONS THAT SUPPORT THE DISABILITY COMMUNITY, COMPILED BY THE AUCKLAND DOWN SYNDROME ASSOCIATION

CLEANING PRODUCTS WITH HEART Get your home super clean for Christmas Day with this great range of products from the good people at Will & Able. Will & Able is the first social enterprise of its kind in NZ and they are on a mission to create 100 new jobs for Kiwi's with disabilities and to make earth-friendly cleaning products! It’s a WIN WIN WIN. Use them in your own home - and give a great practical gift this Christmas. willandable.co.nz

christmas

DOWNLIGHTS CANDLES

Downlights is a New Zealand owned and operated fragranced soy candle company that manufactures luxury candles using artisanal techniques. Candles are lovingly hand poured and the entire manufacturing process supports the development of a variety of workplace skills, and offers employment opportunities for young adults with Down syndrome or learning disabilities.

Our community has watched Downlights go from strength to strength - both in the amazing range of products, and most importantly as a leading social enterprise, taking great care of their employees and sharing their knowledge with other employers too.

2023

HUNGRY HAMISH Hungry Hamish was Founded by a New Zealand man named Hamish, who has Down syndrome, to bake healthy cookies and create jobs in the disability sector. Hamish, 38, loves all things about the bakery, and baking. Give these cookies a try - you won’t

gifts that matter

regret it. Delicious Paleo and Keto healthy cookies online at hungryhamish.com

GIFTING OPTIONS THAT SUPPORT THE DISABILITY COMMUNITY IN NZ COMPILED BY THE AUCKLAND DOWN SYNDROME ASSOCIATION

MACRAMADE NZ

Fun & funky macrame products, made by Charlotte - mum to a beautiful girl with Down syndrome. Not strictly made by people with disabilities, but a great meaningful gift within our community! The 3 arrows design is popular world wide in the Down syndrome community. The 3 arrows representing the tripling of the 21st chromosome, and the upwards direction representing how people with Down syndrome and their whānau rise to overcome challenges. The blue/yellow colour scheme is used in many Down syndrome communities and NZ use purple/orange.

Arrow key chains $12 Spiral key chains $8 Diamond keychains $8 Headbands $11 Berry Knot hairclip $15 Arrows in frame $30 Arrows on dowel $21. MacraMade NZ (FB or insta) or email macramade.nz@gmail.com 20% of proceeds also to go the UpsideDowns Education Trust - to help fund private speech therapy for kids with Down syndrome in NZ

PAGE 9

Candles are the perfect gift for Christmas and all year round. Find out more, at downlightsnz.com

Spring, 2023.

Making the 2023 Elections Accessible Abridged from a piece by Shanti Mathias, reproduced by kind permission of the author & The Spinoff.

Disabled people are often left off the agenda when it comes to election policy. But whether it’s making candidate events accessible or offering easier ways to vote, making sure everyone is informed and included is key.

When Neelu Jennings decided to run for parliament she knew she couldn’t do it alone. The disability advocate, who campaigned for the Green Party in the Hutt South electorate, is legally blind and has no sense of balance following a brain injury. This makes it hard for her to be oriented. “I struggle to find an event unless someone helps me find it,” she says. “The big barrier with accessibility is the amount of energy it takes: instead of going from A to B in a straight line, as a disabled person you go up and around, over and under and through to navigate around barriers.”

Orange

Jennings has an assistant paid for by the Election Access Fund, an initiative that offers funding for electoral candidates with disabilities to assist in campaigning. She’s one of four people to successfully apply for money through the fund. Jennings’ assistant can do things like call ahead to venues to make sure that a stationary microphone will be available, check the layout of a venue; and organise transport and appointments.

The Electoral Commission provides a variety of accommodations to make voting accessible for disabled people. There are limitations: for instance, blind and low vision people cannot cast a fully anonymous and independent vote, which advocates have criticised. This election, there was a full range of election information in alternate formats for every event, including general and Māori voting.

Accommodations can make attending election events and voting possible Image: Bianca Cross

PAGE 10

Spring, 2023.

Neelu Jennings talks at a disability event in Kelston (Image: Facebook/supplied)

Telephone dictation voting has been extended to those overseas, and voting services for the Deaf community are now based in pre-existing Deaf community hubs to make it easier to engage.

The Electoral Commission says it will update its disability strategy before the 2026 election.

Enrolling to vote can be a challenge, too. Grace Wang is a support coordinator at Hōhepa Canterbury, an organisation that provides both residential and day programmes for adults with intellectual disabilities in Christchurch. She’s been leading the organisation’s election project. “Getting people enrolled has been a big chunk of the process – we have over 160 people and enrolling to vote online requires passports, drivers’ licences or RealMe accounts, which is practically difficult for us.”

Part of the election campaign is also making sure that people know who they’re voting for. Hōhepa hosted several local candidates in September, and Wang helped an advisory group to prepare questions for them to answer. Nathan Beaven, a Hōhepa resident with a long-standing interest in politics was one of them.

“I wanted to ask them about youth crime, cost of living and healthcare,” he says. He was also interested in specific questions about disability benefits.

To Beaven, voting is a responsibility. “We all have to vote and know what we care about.”

Wang says that candidates having the opportunity to talk to disabled people is important to make sure that MPs have a picture of concerns for all their constituents.

Other disability organisations have hosted election events for disabled voters. IHC, an advocacy and charity group for people with intellectual disabilities, hosted a forum in Wellington, and Jennings recently attended an event for the disabled community and supporters called Uniting Our Voices in Kelston, a suburb in the Hutt. Making the event accessible required checking the venue had wheelchair access, creating a quiet room for autistic people, ensuring power plugs were accessible for people who have medical devices, and having sign language interpretation and captioning available on videos.

But it was totally worthwhile, Jennings says. “Coming together was amazing for our Hutt community.”

It’s moments like these that make the candidate excited about the possibilities of disability representation throughout the election and parliamentary process.

“You campaign as a team, that’s the best part,” she says. “I would encourage anyone who wants to stand for parliament to do it; it really will make our community stronger.”

At the time of writing, Neelu Jennings is in third position in the Hutt South Electorate. A final result is still pending with Special Votes yet to be counted.

PAGE 11

Spring, 2023.

A little about The Fair Food Crew The food rescue charity, Fair Food, operates in West Auckland where they rescue over a million kilograms of food from landfill every year, preventing nearly 4,000 tonnes of greenhouse gases. This food is sorted into two categories.

Things that can be given to or cooked up for local community groups and that which can be fed to the local pigs. Nothing is wasted, and even the packaging is recycled and used to make things like heatproof blankets out of chip packets! None of this is possible without thousands of volunteers.

Four of these volunteers (at least) are locals with Down syndrome who attend via a programme called A Supported Life. Here they are in their own words.

Yellow

Reuben James Brown (43) I cut bananas and put them in the bucket.

I like going to Fair Food. I love my Fair Food T-shirt. I have one at home. I’m not wearing it today because it’s not clean.

It’s my first year starting. A volunteer is good for the community.

I like food a lot! I like cakes, like cheesecake. The work here is not hard.

Ruth Rose O’Gorman (38) I like work experience here. I like to work hard.

I like swimming – I’m a strong swimmer. I feel like a mermaid!

I’m a designer, making dresses for a fashion show in my new job, so I have work experience at Fair Food as well on my CV. My fiancé is TC Steele I chop bananas and kiwifruit, sometimes pumpkin. I like to cook a lot too – carrot cake and cheesecake.

I like it here – and I lost some weight too.

The food goes to the people in India and New York.

My favourite foods are Subway and KFC. Margot Peacock (37) Here we chop bananas then we put the banana skin in the bucket here.

I’ve been here some of the time – I’m 37.

It’s important to give to other people that need it. I also like coming here to talk to other people and to give to other people.

I like reading Shakespeare.

My favourite foods are macaroni cheese and butter chicken.

Danny Cope (33) I like coming here to put the bananas in the bucket.

To use the bananas, peel the bananas and use them.

My favourite food is macaroni cheese and burgers.

PAGE 12

Spring, 2023.

PAGE 13

Spring, 2023.

Trip to Rarotonga Aqua

By Linda te Kaat

In July this year, six very excited ladies boarded a plane to Rarotonga for a well-earned rest and relaxation holiday to enable us to recharge and reenergise. Five of us have children with Down syndrome and we have been great friends for many years. We were very lucky to connect with some of the members of the Cook Islands Down Syndrome Association (CIDSA) for a wonderful meal at the Muri night food markets. We took NZDSA resources for them of which they were very appreciative.

The CIDSA is an organisation that brings families together to raise awareness of Down syndrome and to create a more inclusive community. They embrace diversity and ensure that individuals with Down syndrome have the support and opportunities they deserve. It serves as a testament to the spirit of inclusivity, understanding, and unity that defines the Cook Islands. Their motto is – Accept, Understand, Connect.

We also took craft equipment and games to Creative Centre Rarotonga which is an amazing place. The crafts these very talented people make are beautiful and they are sold at the markets. Creative Rarotonga are always looking for donations of items for crafts and games so call in and visit them if you are ever there.

The Creative Centre was established in 2001 as a life skills programme that catered for adults with disabilities. Volunteers carried out work one evening a week until funding was available for a permanent service to be developed.

In 2002, the Rarotonga Disability Committee, who was then responsible for overseeing the centre, further developed the service and obtained funding through NZ Aid and the Ministry of Health for permanent staff to be employed.

In 2003, the Cook Islands Creative Centre Trust was established, and the new board set about further developing the Centre to what it is today. In April 2008, the Centre was Registered as a private school under the Ministry of Education.

Rarotonga is a very special place to visit and if you ever get the chance, I suggest you go. Also, if you go, a must do is the mud buggies. As you can see in the photo above, Kim and I got well and truly covered!

PAGE 14

Spring, 2023.

Standing left to right – Tracey Boot, Jean Nootai (sister to Elijah) Linda te Kaat, Carol Stevens. Sitting left to right - Kim Porthouse, Martha Nikoia (mum to Dryden), Shelley Waters Liz Nootai (mum to Elijah & Jean), Kathy Enoka (mum to Reon), Tony Enoka (Dad to Reon), Reon Enoka, Elijah Nootai.

PAGE 15

Spring, 2023.

Rainbow Love LGBTQ+ Easy Read Guide This article is about people who are LGBTQ+ LGBTQ+ stands for:

Lesbian — when a woman is attracted to other women

Transgender — (see page 18)

Gay — when a man is attracted to another man

Queer or questioning

Bisexual — when a person is attracted to both men and women.

The + is to include everyone that doesn’t feel like they fit into these groups but does feel part of the LGBTQ+ community.

PAGE 16

Spring, 2023.

Being attracted to someone means you’d like to kiss or have sexual intercourse with them.

Gender is if you feel more like a man or a women.

This is sometimes different to a person’s sex.

If you do want to kiss or have sexual intercourse with someone, you must also make sure they want to have sex with you. This is called consent.

In New Zealand, you can marry someone of the same sex or gender if you want to.

You might not want to kiss or have sex with anyone. This is called being asexual.

You may feel you have no gender, that you are not a man or a woman.

This is called nonbinary.

Your sex describes if you are male or female based on the body parts you were born with. This can be different to your gender.

Someone who is non-binary might not want to be called a he or a she. They may want to be called they or them instead.

PAGE 17

Spring, 2023.

A person who feels that they are a different gender to their sex is called transgender.

Some people are bullied or hurt for being LGBTQ+. It is wrong to bully someone for being LGBTQ+

Lots of people are LGBTQ+

If you are being bullied or hurt, try to tell someone you trust.

You may not be sure if you are LGBTQ+, and that is ok.

You can meet other LGBTQ+ people by going to events like a pride parade or social group. These might be called rainbow, queer, or LGBTQ+ groups.

PAGE 18

Spring, 2023.

What A Unforgetaball Night!

By Andrew Oswin

DWB

The Unforgetaball 2023 was held at The Hornby Working Mens' Club on Saturday, 16th September.

It is designed to be a family and friends’ night for people with disabilities. It is about dancing and socialising with your friends and having a ball. We had a live band playing music that everyone could enjoy dancing to. Supper was provided on the night

by The Hornby Working Mens' Club caterers, but we had to purchase our own drinks. Everybody had a great time and I got to talk to many of my friends from the Papanui High School Kimi Ora Unit, the Canterbury UP Club and Special Olympics.

Thank you to Linda Te Kaat and Tania Grose for organising the Unforgetaball. You both have done a splendid job organising this event and we are looking forward to the next one in 2024. Also, I would like to thank the wonderful team at The Hornby Working Mens' Club staff and caterers for their hospitality services on the night of the Unforgetaball, and also to the band Girl From Mars for the amazing music you played!

PAGE 19

“It was a Unforgetaball night!”

Spring, 2023.

The arrival of Cumulus: an anthology of skies

DWB

On Thursday 31st of August, starting at 2:44pm my family and I were organizing the launch of my book Cumulus: an anthology of skies at the Dunedin public library in Otepoti- Dunedin. This photographic book combines my dramatic skies’ photography with 14 poems, who 14 poets from Dunedin wrote. It is a perfect Christmas present.

On that night everything was spectacular, amazing, I wanted to freeze every moment, there were a lot of people supporting me, hearing my speech and able to share that one of my dreams become into a reality. It was dream this book, but now I can say that I am touching it.

You all are wondering how this crazy idea come into mind and to make it into something from the ordinary into an extraordinary project. Yes my friends, I want to share with all of you CHAT 21 and to the NZDSA association. It took many years for the making, but I couldn’t do it all by myself, many friends were involved and without them this will not be possible.

Now let me tell you how this whole dream came true. I have always wanted to take the drama of the skies, textures, contrasts, different times of the day, shapes, the formation of the clouds, but the most important among all was to capture the LIGHT of each sky. We were on a trip with my family visiting the most famous rock in Australia ULURU and I saw a vivid bloody sky from that moment I was hooked by it and begun shooting the sky.

So I began my journey almost 10 years ago and I have always wanted to do this subject at Bayfield High and it was “photography” and of course I perused this dream when I finished hight school and I went to Aoraki Polytechnic.

Just outside from my balcony I was chasing every winter, because you all know that here in Aotearoa the drama and the colours of the sky are just mesmerising.

So when I chose the best ones for the book I thought that poetry will be a way of expressing what the sky is really telling us.

I wanted to share a couple of the photographs to showcase the magical night I had at the public Library with family and good friends and I hope you all will enjoy seeing the launch of Cumulus: an anthology of skies.

Do you all know how dreams can came true? It is just as simple as this, three main things we have to think about PERSEVERANCE, PATIENT, and LOVE The comments from the audience were so energetic.

For example that they see in a different perspective of the sky, thanks to my book they are not taking the sky for granted, they are enjoying the vibrancy of the rich colours.

PAGE 20

Spring, 2023.

PAGE 21

Spring, 2023.

Strive & Step Up Training Funshop

By Andrew Oswin

I attended a three-day training funshop for STRIVE and STEP UP at the Mövenpick Hotel, Auckland. It got held on Friday 22nd September - Sunday 24th September 2023. The Funshop was focused on the United Nations Convention on the Rights of Persons with Disabilities, Down Syndrome Awareness Month, Presentation Skills, Article 29 (better known as Politics), and a STRIVE Induction.

We had Umi Asaka, a guest speaker, who spoke to us on ZOOM about The Donald Beasley Institute and presented a PowerPoint Presentation about what they are currently doing to help disabled people in the community. We then helped her with some research for which we gave her our permission and she asked us questions that we were happy to answer.

F ra n co Va cc a r i n o p re s e n te d a P owe r P o i n t Presentation about Presentation Skills where we learnt about Body Language and what to do when presenting a presentation to an audience.

The STRIVE Leadership Team were working on Article 29 learning about Politics and reading an Easy Read document about being prepared for a General Election. The STEP UP Group were working on a Team Timeline of their highlights and memories of what they remember when they first started as a member of STRIVE. We got together with STRIVE and we made a paper raft as a team where we awarded points. Apart from working we also liked to have fun and socialise.

DWB

We went out for dinner at Burger Burger on Friday and then on Saturday we went out for a ferry ride to Devonport to do a project. We had to find objects about what the acronyms of STRIVE stand for. We then had some pre-dinner snacks and drinks at Devon On The Wharf before heading back on the ferry into Auckland. We went out to a Mexican restaurant called Frida's for dinner and we had a lovely time.

We ran back to the hotel because it was raining. We stayed up a little bit so that we could have some conversations over a hot drink. On Sunday, we packed up our suitcases and then had breakfast. The STEP UP Group continued working on their Team Timeline and reflected on what we had done during the Funshop. We filled out our evaluations and then we had lunch in the hotel’s restaurant.

We farewelled everyone and then we departed by shuttle to the Auckland Airport Domestic Terminal where we checked in and had afternoon tea before heading home on the plane.

Thank you to Averil Glew, Franco Vaccarino, Zandra Vaccarino, and Jess Waters for their ongoing support towards STRIVE and also to the STEP UP members.

The Funshop this month has been the best and we really appreciate your helpful feedback. Thank you very much!

PAGE 22

Spring, 2023.

Chey and Nyah at the Paraparaumu adaptive sports programme run by Special Olympics

PAGE 23

Spring, 2023.

Blue

By The Champion Centre Everyone hopes for a life full of peace, contentment, connection, empowerment, and enjoyment. Equally, everyone knows that life comes with challenges and adversities that are hard to control and sometimes hard to predict. When we are facing things about life that are difficult or upsetting, changes in mood can become part of the picture. Grief, worry, sadness, frustration, and anger are familiar visitors when we are struggling.

Although caring for a child with a developmental disability such as Down syndrome is full of positive experience and advantages, parents appear to be at greater risk of depression and anxiety. There are several associated stressors for parents, including increased caregiver demands and financial strain amongst others. It can be difficult for parents to identify and acknowledge their feelings of emotional distress. Once identified, it can be even more difficult to admit to them and ask for help.

Increasingly in Aotearoa, we are talking more openly about mental health and related challenges. We have famous people and sport stars openly discussing their personal struggles. We have national initiatives like Gumboot Friday. We have GP services building in on-site mental health support and response.

Nonetheless, for parents of children with Down syndrome there can be additional – and invisible – obstacles to getting the support that is needed, wanted, and deserved.

Research with parents tells us that having a child with a diagnosis that impacts development increases the parent’s chances of meeting cut-off scores for anxiety and depression. Research findings like that shed light on the realities for some parents but does not help us understand why or – more importantly – what to do. Some of the “why’s” are obvious. Time in NICU and hospital, medical fragilities, endless doctor visits, participation in early intervention, impact on the ability to work, impact on sleep and free time, impact on the ability to find childcare… the list goes on. This is often

Blue

referred to as “unseen labour” and it can contribute to exhaustion, overwhelm and emotional distress.

However, some of the “why’s” are more hidden and subtle, yet just as powerful.

Having a child with Down syndrome often means parents must be more than parents. They must be advocates and champions, fierce protectors and defenders, and educators for friends, family and even society at large. It is common for parents to feel that acknowledgement of their stress or sorrow is somehow failure, or worse, betrayal. It is vital for parents to understand that having a difficult time – even if the difficulty is related to your child’s diagnosis or journey with Down syndrome – does not diminish your goodness as a parent, nor your child’s worth and wonderfulness as a person. You can be a strong advocate whilst also wanting some time for yourself; you can love your child unconditionally whilst also wishing that your journey was different.

On top of the many challenges that parents cannot control, all too often parents are also experiencing guilt – the guilt of not doing enough, being enough, getting it all right, being the ideal parent they want to be (and are often expected to be). Feelings of guilt – often surfacing because other feelings are present - contribute negatively to wellbeing. It is normal and healthy to sometimes feel anger, frustration, worry, fear and a desire to run away (alone!) to a tropical island.

If you or someone you know is in the midst of a hard season, struggling with anxiety or depression, or in need of support, there are things you can do. Notice what you’re feeling. Try and shift from judgement to curiosity. Identify who you might trust to talk with. If talking isn’t possible (or just not your thing), consider writing your thoughts and feelings down. And connect with others. The beauty of a community like NZDSA is that there are others out there who understand.

PAGE 24

Spring, 2023.

PAGE 25

Spring, 2023.

President’s Pen

By Kim Porthouse In keeping with the theme for this edition of CHAT 21, I thought I would reflect on what a rainbow means to me.

I know that the word rainbow brings up many different meanings and associations for people. For me, when I hear the word rainbow, I always think of this photograph that I took a few years ago of Brendon. Don’t you love his huge smile and the joy on his face? The overarching rainbow is such a thing of beauty, and it symbolises so many things for me.

It reminds me of the joy that Brendon brings to my life. The rainbow also reminds me of my connection to the Down syndrome community and the richness of building networks, because the support of others is invaluable and empowering.

My volunteer work for the NZDSA has provided me with so many opportunities to meet all the wonderful people across New Zealand. Each person contributes different experiences and knowledge that creates the vibrancy of our community.

There is a phrase that says there is a pot of gold at the end of the rainbow, and for me, that pot of gold is the connections and networks I have within the community.

The rainbow of hands represented all the students in the classroom with Brendon. It also reminds me of all the exceptional people who are part of the Down syndrome community.

A couple of months ago, for the first time, I went on a trip that was just for me. I joined a group of friends who also have children with Down syndrome for some well-deserved rest and relaxation.

I came back feeling so positive and refreshed. So I encourage you to think about how you can recharge because the wellbeing of parents and whānau is so important. I would like to remind you that the flexibility of Carer Support allows you to personalise what rest and recharging (in other words, respite) means for you. Stay tuned for a feature in our next edition about respite.

During our holiday, we didn't just have fun and relax while riding mud buggies. We also made time to meet with parents and families from the Cook Islands Down Syndrome Association. This turned out to be a highlight of our trip, as it gave us an opportunity to share ideas, establish new connections, and exchange NZDSA resources (see page 14).

I truly appreciated having that time of refreshment because shortly after returning from my trip, Brendon was hospitalised. Nine nights in a hospital is exhausting and at times overwhelming, and for me, it resurfaced so many memories of previous hospital stays with Brendon. I know that this experience will resonate with so many parents who have or are going through this difficult journey, so I want to remind you to make opportunities that feed your soul so that you take care of yourself, as this is the only way you can be the best advocate you can be for your young person.

For me, feeding my soul means some gardening, meeting with like-minded parents, and having time to talk with those who understand similar life experiences, which is so beneficial.

I am excited to announce our first art competition.

All the details are in the notices page and I can't wait to see all the amazing creations.

I hope you have a restorative, joyful, and refreshing Christmas. May you also find time to nourish your soul this holiday season.

PAGE 26

Rainbow - Fashion in the Capital

PAGE 27

Spring, 2023.

Politicians commit to working across party divides to fix the broken education system.

IHC’s pre-election online forum line-up on 6 October saw a high level of agreement that the current education system does not work for disabled and neurodiverse students.

Minister Jan Tinetti (Labour) Erica Stanford(National), Teanau Tuiono (Green),Toni Severin (Act) and Erika Harvey (NZ First) all committed to work across party lines to build an education system that works for ALL. Politicians present agreed that: the public education system does not work and causes harm to disabled and neurodiverse students and requires transformation the current resourcing system is rigid, inflexible and deficit focused and the Ongoing Resourcing Scheme is used to ration resources rather than meet student needs.

Labour, National, Green, ACT and New Zealand First committed to: work across political divides to build a public education system that works for ALL disabled and neurodiverse students a total overhaul of how schools are funded to meet the requirements of disabled and neurodiverse students and their schools make the required changes to initial teacher education, professional development and the support available to teach the diversity of students in NZ’s education system collect robust data on disabled and neurodiverse students, in respect of their access to education, achievemnt and wellbeing and their outcomes from Education In addition Labour, Green and New Zealand First parties agreed to implement the UN Disability Rights recommendations on Inclusive Education. The National and Act parties said they didnt know enough about those recommendations to make a commitment for implementation.

IHC’s Online Forum was recorded and shared widely and can be seen here IHC and allies across the disability and education sectors expect the commitments made by political parties to be honoured and implemented.

Please join with us in holding political parties to account by: circulating this document including reference to these commitments in briefing papers to the incoming government engaging with Education and Science Select Committee meetings.

Lobbying political parties to set up additional mechanisms to progress the commitments made at the 6 October 2023 Forum.

Trish Grant Inclusive Education Lead IHC Trish.grant@ihc.org.nz PAGE 28

Spring, 2023.

Ministry Of Disabled People Meeting 2023

By Andrew Oswin

Hi, my name is Andrew Oswin, a 33-year-old man with Down syndrome, and I am from the Garden City of Christchurch. I would like to take this opportunity to let the Down syndrome community know about a meeting I got invited to attend with Zandra Vaccarino, National Executive Officer, of the New Zealand Down Syndrome Association which we were representing at the Rydges Hotel, Wellington Airport in June.

The aim of the meeting was working with other organisations and to network with them. We were welcomed with a Kaupapa. It then led into a Mihi Whakatau and then we had morning tea.

After morning tea, we had an introduction and overview of the Partnership Meeting with a Question and Answer. We then looked into what Partnership means to other people and then we had a break for lunch. After lunch we looked at the principles or values that will help to guide our partnership work.

Afternoon tea was then served and the next topic we looked at was what we would like to partner on.

We had a Karakia Whakamutunga for the closing of the meeting for the day. We all had a lovely dinner at the hotel’s restaurant and I got dressed up smartly for the occasion.

On day two we had a Karakia Timatanga which opened the meeting. We were focusing on looking into thinking about a partnership for Whaikaha, disabled people and tangata Māori people of what partnership groups should look like. We then had a break for morning tea. The next focus was looking at a summary of themes and discussions about the next steps. After that the meeting finished and we had lunch again in the hotel’s restaurant.

It was a great opportunity for me to help to represent and support many Down syndrome communities across New Zealand. It was lovely working with Zandra and I would like to thank her for working and supporting me at the meeting and also to the Ministry Of Disabled People for inviting me as a STRIVE Member.

PAGE 29

Spring, 2023.

The Rose Award presented to…

Wellington Zoo

Nominated by Shelley Gallagher Shelley says: “I would love to nominate Wellington Zoo and reward them for the work that they do and for making accessible what is an important part of Fletch’s ongoing working and social interactions.

Fletch, my son, recently turned 18 and has been a volunteer at the Wellington Zoo for the past year.

From the start the team at Wellington Zoo has been welcoming and solidly committed to ensuring that Fletch is a part of the Wellington Zoo volunteer team. He has a number of jobs that he does that mainly involve visitor engagement by asking people to take surveys on an iPad, handing out stamps to children and creating ‘enrichment activities’ for a number of animals.

There have been no barriers to him becoming a part of the team and they obviously value his work and enjoy him being a part of the wider Zoo environment.

This was reflected in the fact that he received an award at the annual Agouti Awards which recognises exceptional work for volunteers at the Zoo. The team of volunteers have also embraced Fletch and ensured that he is a welcome and valued member of their team.”

The NZDSA would like to acknowledge the team at Wellington Zoo for displaying a welcoming and inclusive working environment. We think you are amazing!

PAGE 30

Spring, 2023.

PAGE 31

Spring, 2023.

Looking After Our Mental Health Pink We all have mental health. It’s a taonga/treasure, something to look after so we can lead our best and most fulfilling lives. At the Mental Health Foundation, we promote the Five Ways to Wellbeing, a set of proven tools to boost our mental health when we need it. These practices are backed by evidence and can be easily incorporated into anyone’s life, at any time. The Five Ways to Wellbeing are: • Take Notice | Me Aro Tonu: Take Notice refers to the practice of mindfulness. Mindfulness can be thought of as open and receptive attention to, and awareness of, what is occurring in the present moment.

• Give | Tukua: Give refers to actions based on kindness, altruism, or generosity. Carrying out acts of kindness boosts our happiness, life satisfaction, and overall wellbeing. (Editor’s note: NZDSA and your local Down Syndrome Association are always happy to receive donations!)

• Be Active | Me Kori Tonu: Widely recognised as being crucial for physical health and fitness, being active is also a powerful mood booster.

Being active can not only make us feel good, it also enhances our thinking and learning abilities.

• Connect | Me Whakawhanaunga: Connection is the ngākau/heart of our wellbeing. It weaves us together, making us feel seen, heard, and understood. When we nurture meaningful connections with others, we fuel our own happiness.

• Keep Learning | Me Ako Tonu: Keep Learning refers to ‘exercising our mind’ – almost like taking our brain to the gym. Any activity that challenges our thinking and expands our consciousness improves our ability to think.

Lower levels of wellbeing can also be associated with bullying, and those who experience bullying are more likely to have mental health issues. People are more likely to be bullied if they seem different from their peers in some way. This might include differences in race, sexuality, gender identity, ethnicity, religion, disabilities and abilities, weight or height.

The Mental Health Foundation runs Pink Shirt Day annually as a movement to eliminate bullying by celebrating diversity and promoting kindness and inclusion - we aren’t all the same and that’s a great thing! There are helpful actions people can take if they witness others being bullied, including being an Upstander by calling out the bullying, standing with the person being bullied, and supporting them to get help. For those who experience bullying, the Five Ways to Wellbeing can be used as tools to support their wellbeing when things feel tough.

Find out more about the Five Ways to Wellbeing at www.mentalhealth.org.nz/wellbeing, and visit pinkshirtday.org.nz/ to learn more about Pink Shirt Day and bullying prevention. For more information about the Mental Health Foundation’s mahi, head to mentalhealth.org.nz.

PAGE 32

Spring, 2023.

Check this out!

Purple

PAGE 33

Spring, 2023.

NEO Notes Kia Ora

“Be A Rainbow In Somebody Else’s Cloud” Dr Maya Angelou International Volunteer Day is observed on December 5th every year, and it presents us with an excellent opportunity to express our gratitude to all our incredible volunteers. They are like a rainbow in someone else’s cloud as they offer support and selfless acts of service to the Down syndrome community of Aotearoa. Thank you to our amazing volunteers!

Kōrero and Kai series I have had the pleasure of meeting many amazing members of our community at various Kōrero and Kai events. Each event has its own unique local flavour but the Enabling Good Lives’ approach is still a focus of these sessions. It’s always a highlight to see people reconnecting or connecting for the first time, sharing ideas and making plans for further gatherings. The NZDSA has hosted Kōrero and Kai events in Nelson, Hokitika, Hawke’s Bay, Dunedin, and Invercargill. We have a few more events scheduled for 2024, and we hope to reconnect with you at future events in the East Coast and Southlands.

I’d like to express my gratitude to all the wonderful speakers who have shared valuable information and personal stories about how they have applied the principles of EGL to improve their lives.

NEO

3rd Virtual Conference Our aim with the Virtual Conference is to provide a platform for our members to engage with and learn from distinguished national and international speakers on a wide variety of topics relevant to all stages and phases of life. We understand that not everyone can attend a three-and-a-half day conference, so we have scheduled 60-minute sessions at different times over several weeks to accommodate everyone’s schedules. Recordings of the sessions are not available following the conference, so for future virtual conferences remember to bookmark the events you don’t want to miss.

Meeting with families in Hawke’s Bay

If you have any suggestions for future topics or time slots for the Virtual Conference, please let us know.

You can reach me at neo@nzdsa.org.nz.

I would like to express my gratitude to all the donors who contributed to the Southern Stars appeal and Downlights for their support in making the Virtual Conference a free event.

PAGE 34

Spring, 2023.

faced a range of positive and negative changes.

These changes presented opportunities to pivot and progress its strategic plan. Despite the challenges, the NZDSA had a productive, stable, and successful year. If you are interested in reading the NZDSA Annual Report, kindly send an email to neo@nzdsa. org.nz and a copy will be provided to you.

STRIVE and Key Skills for Advocacy Funshops The NZDSA is committed to the growth of selfadvocates. During this quarter, we organised a Key Skills for Advocacy workshop and a STRIVE workshop. Additionally, several members of STRIVE and STEP-UP conducted a series of online STRIVE Afternoon Tea Club sessions, which were hosted by individuals with Down syndrome for others with Down syndrome. These sessions are advertised in Enews and Facebook.

Mohit Chand, Edward Borkin & Paula Beguely in Auckland

I have provided a summary of the 3rd Virtual Conference in this edition of CHAT 21.

Rose Award This quarter I received a nomination from Shelley Gallagher for Wellington Zoo. Congratulations to the team at Wellington Zoo! You can read more about this nomination in this edition of CHAT21.

The Rose Award is an opportunity to express gratitude towards individuals or organisations that support individuals with Down syndrome or the Down syndrome community. If you know someone who deserves a nomination - an individual, family, or organisation - please send an email to neo@nzdsa. org.nz explaining how they have contributed to “promoting the participation of people with Down syndrome in their community”. Once we receive your nomination, we will acknowledge the person in CHAT21 and post them a letter that outlines why they were selected, along with a box of Rose’s chocolates.

NZDSA 2023 Annual Report The NZDSA held its Annual General Meeting online on October 16th. The theme for the 2022-2023 fiscal year was “Change and Connection”, as the NZDSA PAGE 35

Participants at the Key Skills For Advocacy Funshop

Participants heading home after the Funshop

Spring, 2023.

Mohit Chand

Youth Development Camp - Southern Stars Thank you Southern Stars, and all the wonderful donors for making it possible to host the Youth Development Camp at Vaughan Park in November 2023. You can read about the weekend in the next edition of CHAT21.

World Down Syndrome Day World Down Syndrome Day (WDSD) provides an excellent opportunity to increase awareness, connect with our community, and raise funds for the NZDSA’s support, information, and education services. We’re seeking champions who can raise funds online or host a T4T party to support the NZDSA. If you’re interested in contributing to this cause, please contact Zandra at neo@nzdsa.org.nz.

Plans for 2024 The National Committee of the NZDSA has already planned several events for 2024 and is excited to engage with you in your community. We will be sharing information about these events via Enews. If you haven’t subscribed to our newsletter yet, please get in touch with Jess at kiaora@nzdsa.org.nz so you don’t miss out on any updates.

Summer break As we near the end of the year, the team members at the NZDSA’s national office are wrapping up their work for 2023 and preparing for events in 2024.

Please note that the national office will be closed from the 18th December 2023 to the 10th January 2024.

We have already experienced some hints of summer weather, which signals the upcoming holiday season. Whether you plan on staying home or are going away, we hope you have a fantastic time.

We would love to showcase your favourite summer photographs in the upcoming editions of Enews and CHAT21. Please send your photos to Jess kiaora@ nzdsa.org.nz or Sarah editor@nzdsa.org.nz.

The team at the National Office and the NZDSA National Committee wish you and your family a joyous Christmas, a memorable summer break with your loved ones, and a fantastic 2024!

Hei konei rā Zandra

PAGE 36

Spring, 2023.

Max’s Planter Boxes Green

This article is reproduced with kind permission from The Shed Magazine, Issue 111.

Max is 28 years old and has a business making planter boxes and his business is thriving. So much so that now he needs his own workshop/shed to put all the boxes together so he can keep up with demand. This is part one of the journey to build a backyard shed for Max. “G’day! I’m Max. I came into the world of my mum and dad (Helen and Geoff) in 1995, as their lucky number two.

Fun fact about me is I was born with Down Syndrome, or Trisomy 21, as it is called in France, where I was born.

Mum and Dad keep the ball rolling by trying to keep me busy and learning, so my days are filled with activities such as painting classes, Special Olympics swimming practice, house cleaning, lawn-mowing, and making planter boxes. Dad has designed a planter box made from fence palings, and he cuts kits for me to put together. He has made an aluminium jig for me to use so I pre-drill and hammer the nails in the right places. Then I paint the boxes, fill them with soil, and plant them with herbs or annual flowers. I have sold about 70 planter boxes to date and, while they don’t make a great profit once the time and materials are added, assembling each one grows my woodworking skills and keeps me off the streets.”

PAGE 37

Spring, 2023.

The Rainbow Spectrum — What is a Meltdown?

By Sarah Paterson-Hamlin Rainbow You might remember a few editions ago, in Winter 2022, we looked at dual diagnoses, including autism and Down syndrome. Around ten times as many people with Down syndrome are diagnosed with autism than in the general population. I didn’t know it when we put that issue together, but I am one of those in the general population with both autism and ADHD, sometimes shortened to AuDHD. For our rainbow-themed edition this Spring, it seems fitting to explore one facet of autism, represented internationally by a rainbow spectrum and infinity symbol.

I was diagnosed earlier this year at the age of 33. This is not uncommon among women of my generation, as we learn more and more about autism and how it manifests in girls and women who become highly effective at masking their autistic traits.

This new information about how my brain works has been life-changing. It makes sense of so many things, and brings relief as well as grief for the support and understanding that I could have had earlier.

Perhaps it also explains a little of why I have ended up an auxiliary to this wonderful community through UpsideDowns and now the NZDSA. But that’s a topic for another day. Right now, we’re going to take a look at meltdowns. This terminology is most often associated with autistic people, but can impact anyone who is neurodivergent, who experiences sensory overload, or who struggles with speech or communication, so even if you aren’t impacted by autism in your whānau, it is still worth exploring the concept of a meltdown.

Meltdown vs Temper Tantrum If I had a dollar for every time I was in trouble for having a temper tantrum as a younger person, then I’d probably be able to retire tomorrow!

Of course, with the benefit of hindsight, I now recognise many of these would have been meltdowns rather than tantrums. But what’s the difference?

Our friends at Awhi Ngā Mātua describe a temper tantrum as “goal-oriented behaviour, for example, a child is communicating to their parent that they want their attention. A tantrum can be interrupted and used as a learning opportunity.”

A meltdown, however, is something experienced by someone in sensory overload or overwhelmed by other stressors. “The primary focus needs to be on keeping the child safe until the crisis is over.

During a meltdown children have little awareness of their physical surroundings and will have difficulty understanding what is said to them.”

After the storm had passed, I remember on many occasions trying in vain to explain to teachers and parents that my behaviour had been nothing to do with trying to get attention. That, in fact, attention was the polar opposite of what I had wanted. Most attempts to interrupt the meltdown (which could well have worked had I actually been having a tantrum) instead prolonged the overwhelm spiral. If I’d had the ability at the time, I would have explained that if I’d been left alone to cry or scream into a pillow or tear up some grass, then the whole thing could have been over hours earlier.

Tips for when your child is having a meltdown adapted from Awhi Ngā Mātua – the language used is parent-child, but can be adapted for whatever your scenario is.

1. Safety: Try and ensure the space where you are is as safe as possible, i.e., away from roads, sharp objects, other children, and any other hazards you’re aware could be an issue.

2. Privacy: Ask any onlookers to give you and your child space and privacy

PAGE 38

Spring, 2023.

3. Specifics: Vague questions like “what’s wrong?” “what can I do?” etc. may increase distress. Try and keep questions or instructions specific, e.g., “don’t hit the wall, hit this pillow”, “do you want to be alone right now?” or “I’m in the next room when you’re ready”.

4. Eliminating triggers: If you know what may have caused the meltdown, remove or reduce the trigger, if possible, e.g., turn off bright lights or loud music, leave an overwhelming setting such as a loud group of people for a time. It might sound counter-intuitive, but playing music through noise-cancelling headphones helps to turn down all the other sensory inputs of the world. It helps me to listen to music I know well, so there’s nothing unexpected to anticipate.

5. Recovery: Allow time to recover in as comfortable a setting as possible.

Triggers Naturally, avoiding meltdowns in the first place is the ideal, and knowing triggers is a big part of that. Every person on the planet has different things that will trigger disruptions to their sense of calm and equilibrium, and it’s generally a matter of recognising and acknowledging these in ourselves as well as in our loved ones with Down syndrome.

For neurodivergent people and those with sensory sensitivities, some of the more common examples are: • Interruptions to routine • Sensory overload (loud noises, crowds, bright or flashing lights – I find busy markets, cafes, or bars a real struggle for instance) • Difficulty communicating or being understood (this is where our friends at UpsideDowns and TalkLink do such important mahi!)

The Rumble Stage Another important distinction between a meltdown and a temper tantrum is the rumble stage. Tantrums will generally come out of nowhere and disappear just as quickly (like when a four-year-old insists that it’s the end of the world if they have to wear shoes but any concern evaporates when they arrive at preschool and their best friend shows them a good rock). A meltdown, however, has the arguable advantage of the ‘rumble stage’ where warning signs start to show up. Signs of anxiety like pacing, picking, or ‘stimming’, being very still and silent, or asking the same thing repeatedly can indicate a rumble stage. For me, I might find myself feeling physically frozen and unable to speak during this stage – always a good sign for me to remove myself from a situation! Awhi suggests: “At this point it may be possible to avert a full-blown meltdown with distractions or using calming strategies such as listening to music, removing any potential triggers or providing squeeze balls or fidget toys or soft toys.”

Further information I hope some of my personal insights and recollections into meltdowns as well as the expertise of the team at Awhi Ngā Mātua has been helpful. The IHC Library contains a wealth of information on the topic for both children and adults if you’re interested in reading further.

For things like stim toys, weighted blankets, and other tools you may want to try, places like K-mart and Spotlight can be treasure troves if you’re on a budget. There are also specialist outfits like Sensory Sam if you’ve found something that works and are ready to invest in a high-quality option.

PAGE 39

Spring, 2023.

Swimming in the Special Olympics with Jesse Williams

By Reuben Williams

My older brother Jesse was born in Masterton, Wairarapa in July 1985 which makes him 38 this year.

We moved as a family to Palmerston North when he was 7. I’m his only sibling and he is the proud uncle to three boys, Oaklyn, Wilkie & Dusty.

He was raised by our Mum and Dad, Barry and Fiona Williams.

Mum passed away ten years ago and he has continued to live with Dad. He will eventually come and live with me and my family in the coming years.

Jesse’s interest in swimming started at a young age at local swimming holes just like a lot of Kiwi kids.

Being taken to rivers and the local pools with dad and as a family, he was never scared of the water and took to swimming with ease.

By the age of eight he was confident being in the water unassisted. He is also very good at swimming in the ocean and likes to body surf.

Jesse had a very good schooling life and just fitted in where he needed to. He stayed at Awatapu college until he was 21. After leaving school, he got a job at the local swimming pool and gym complex and still works there today.

He has been competing in Special Olympic sports for twenty years, including basketball, swimming, and golf.

Swimming would become his main focus throughout the years as there have been great people involved with the Manawatū Special Olympic organisation.

Bronze

Jesse had always enjoyed the social aspect and getting out meeting other athletes at swimming events. Although he can swim all strokes, he has been a particularly good freestyle swimmer, winning medals and ribbons at most events.

He is very routine orientated which helps with his focus and determination with training and competing. You will find him at the pool and gym most days after work, working out and swimming or having a sauna.

He is in very good physical condition, and this is all down to his hard work and dedication.

He was selected for the New Zealand Special Olympics team earlier this year to compete at the world games in Berlin, Germany. This was a great reward for his years of hard work. He took the whole experience in his stride and made the most of it, both in and out of the pool, achieving personal best times in all of his races and bronze medals as an individual and in the teams relay.

Outside of swimming and sport, Jesse loves good food, coffee, playing ps5, going out for meals, watching favourite TV programmes, hanging out with friends, and spending time with family.

We have always viewed Jesse as “one of us” - he is treated like the rest of us and just wants to be included. By having a supportive family and network of people around him, nothing stands in his way.

We are all very proud of his achievements and celebrate all his success, he is truly amazing.

You can follow Jesse’s progress on facebook — @thebaldguy

PAGE 40

Spring, 2023.

PAGE 41

Spring, 2023.

Playing the Rainbow Rainbow

UpsideDowns headquarters was awash in a sea of colour when we invited a group of our members around for a fun morning of painting, cupcake decorating, and games.

As the Auckland weather put on a typically temperamental show, our Avondale office provided shelter and stimulation for those looking to get creative on a lazy Sunday. We had an awesome range of kids, from preschoolers to highschoolers, show up with their families to help make the day a truly vivid affair.

Our art station gave young painters the opportunity to collaborate on canvases, working together to create some stunning masterpieces that are now proudly displayed for visitors to admire (unless, of course, the artist couldn’t bear to part with their creation, which is totally understandable). Those not so keen on paint and brush used markers to bring colouring pages to life.

In the next room, culinary creatives donned their chef hats to elevate the humble cupcake from snack to artwork. Icing in brilliant hues made the perfect foundation for sugar sprinkles, beads, flowers, and other decorative flourishes. And of course these

beautiful (and sticky!) creations proved as enjoyable to consume as they were to create.

The colourful play continued in the lobby as the kids threw together far out fashion with the dress up kit, imagined vivid worlds for dolls and toys to inhabit, or quietly read picture books with their families. By the end of the session, the office was littered with wayward sugar sprinkles, stray licks of paint, smears of icing, and shed bits of costume fabric – cleaning up this rainbow would be a mission, but all the smiles and laughter made it more than worthwhile.

The little team at UpsideDowns works hard behind the scenes to ensure our members have the support they need on their communication journeys. Days like this, when we get to see these amazing young people enjoying the skills they’ve learned through speech and language therapy mean the world to us (and having permission to make a big colourful mess is pretty appealing too).

UpsideDowns is a charitable organisation providing funding for speech and language therapy for Kiwi kids with Down syndrome – visit www.upsidedowns. co.nz to stay up to date with future events.

PAGE 42

Spring, 2023.

PAGE 43

Spring, 2023.

IHC Library Colours in the title, colourful book covers and colourful characters. IHC Library has them all!

IHC

The rainbow in my heart: a book about emotions. By Jessica Urlichs and Rebekah Ballagh We all have lots of feelings, it’s OK to let them show. They all live in our heart as our very own rainbow. What does your body do when you’re sad or angry? How do you show someone you are proud? For children, experiencing new emotions and understanding them are two vastly different things, but poet Jessica Urlichs and illustrator Rebekah Ballagh have created an accessible and wondrous rhyming picture book about the rainbow of feelings that live in our heart that helps little ones to express their feelings. A qualified counsellor, Rebekah has provided notes for parents and teachers at the back of the book to help caregivers start conversations around understanding, identifying and navigating emotions.

The every body book : the LGBTQ+ inclusive guide for kids about sex, gender, bodies, and families. By Rachel E. Simon Summary: “This vibrant and beautifully illustrated book educates children about sex, gender, and relationships in a way that is inclusive of all sexual orientations and gender identities. Covering puberty, hormones, pregnancy, consent, sex, babies, relationships, and families, it uses gender-neutral language throughout and celebrates diversity in all its forms, including race, ethnicity, faith, bodies, gender, and sexuality. For use with children ages 8-12.” -- Back cover.

PAGE 44

Spring, 2023.

Red beast anger workbook: for all children who want to tame their red beast including those on the autism spectrum.

By Kay Al-Ghani Summary: “This illustrated and interactive workbook will help children find ways to calm their Red Beast and learn how to prevent it from waking in the first place.

Full of practical activities and illustrated examples, it supports the development of emotional and sensory regulation and provides coping mechanisms for children who experience intense emotional flooding or meltdowns as well. The workbook includes a helpful introduction for adults on the science of selfregulation, clear guidance on how to pace the learning and a wide range of activities such as scenarios to help children explore their anger, anger management plans, and exercises that encourage interoceptive awareness.

It also addresses common causes of anger including perfectionism, winning and losing and discusses the importance of a positive attitude and using kind words in a child-friendly way. Join Danni and his friends and family as they explore the challenges they face from the Red Beast and how they overcome them.”

Colourful characters A life worth living: acting, activism and everything else by Tommy Jessop and Jane Jessop Summary: Tommy Jessop is a multi-award winning actor, theatre performer, and campaigner. Tommy has been at the vanguard of bringing awareness of the potential of people living with Down syndrome to the media, and to government. A Life Worth Living will be Tommy’s story - from his journey into acting and campaigning while showing his unstoppable determination, charisma, and love for life.

Tommy’s natural instinct to help others leaps out from the pages, as does his wish to make people aware that those with learning disabilities just want to be treated like everybody else.

Against all odds

By Ellie Goldstein Summary: When Ellie Goldstein was first diagnosed with Down Syndrome, her mother was soon told that h e r n ew - b o r n wo u l d amount to nothing. For 21 years and counting, Ellie Goldstein has been defying the odds and overcoming every hardship thrown at her. Told she wouldn’t walk; Ellie has danced on mainstages. Told she wouldn’t learn; she has gained a college education. And told not to dream, Ellie has gone on to become the first model with Down Syndrome to be photographed for Gucci and continues to change the face of fashion from the inside out in countless international campaigns.

Ellie’s heart, humour, and hard work has allowed her to achieve her dreams. An advocate for disability, Ellie uses her platform as a disabled model to act as a role model and inspire other people with Down Syndrome.

And lastly, two articles about ways ‘to do Christmas and the holidays” Helpful hints for the holidays by Simpson, Paula L Series: Autism Digest ; November 2022-January 2023: 26-27 Holiday gift guide : helpful hints for the holidays by Simpson, Paula L Series: Autism Asperger’s Digest ; January 2019: 16-172 0 19 If you are interested in any of these items or would like to know what else they have please contact your library team (Phil, Ros 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 And their video on searching the catalogue https:// ihc.canto.global/s/RJORE?viewIndex=0

PAGE 45

Contact Directory NZDSA Committee

Kim Porthouse President 0800 693 724 president@nzdsa.org.nz

Bev Smith Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz

Maia Faulkner Zone 1 Representative Auckland 0800 693 724 auckland@nzdsa.org.nz

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

Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawke’s Bay 0800 693 724 zone3@nzdsa.org.nz

Carey-Ann Morrison Zone 4 Representative Wellington & Wairarapa 0800 693 724 zone4@nzdsa.org.nz

Angelique van der Velden Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz

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

Shelley Waters Treasurer treasurer@nzdsa.org.nz

Averill Glew Self-Advocacy Portfolio averill@nzdsa.org.nz

Sarah Paterson-Hamlin CHAT21 Editor editor@nzdsa.org.nz

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

Paula Beguely Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz

Pauline Marshall Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com

NZDSA Staff

Zandra Vaccarino National Executive Officer 0800 693 724 neo@nzdsa.org.nz

Linda te Kaat National Administrator 0800 693 724 na@nzdsa.org.nz

Jess Waters Social Media & Information Officer hello@nzdsa.org.nz

Siobhan Vaccarino Administration Support Officer hello@nzdsa.org.nz

Regional Liaison Officers Sandra Slattery Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com

Kathryn Sadgrove Northland Coordinator 0800 693 724 ksadgrove@xtra.co.nz

NZDSA Socials The NZDSA has a Facebook page that s e r ve s a s a c o m m u n i t y f o r u m a n d n o t i c e 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.

PAGE 46

Notices NZDSA Art & Photography Competition

The NZDSA is holding an art and photography competition to find our country’s most talented artists with Down syndrome!

The winning artwork or photograph will be used in our greeting cards, annual report and showcased around the country.

The theme is celebrating colour; we would love to see what colour means to you — especially the colours orange and purple — show us what inspires you and makes you happy.

Youth Development Camp The NZDSA is calling for expressions of interest from NZDSA members over the age of 18 with Down syndrome who would like to attend the Youth Development Camp from the 22nd—24th November 2024. Please email Linda na@nzdsa.org.nz by the 29th February to register your interest.

Thanks Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year:

The entries will be judged across 4 age groups: • • • •

NZDSA National Achievement Awards The NZDSA is calling for nominations for the NZDSA 2024 National Achievement Awards. This award recognises the accomplishments of people with Down syndrome during 2022-2023.

If you would like to know how to nominate a person please email Linda te Kaat na@nzdsa.org.nz

Not yet at school Primary school High school Post school

The top entries in each section will go to a public vote to decide the overall winner. We have some great prizes for the top entry from each section and the overall winner.

Please submit your artwork or photo to hello@nzdsa. org.nz with your name, contact phone number and the age group you are entering.

Entries close on 31 January 2024. We can’t wait to see your artwork!

Tell us your story!

We are looking for adults with Down syndrome to tell their life stories! We will either publish these stories in a book or include them in CHAT21 or on the NZDSA’s website. We will be looking at different aspects of life stories, for example education, work, friends, love, leisure time, spirituality, inclusion, and dreams for the future. If you are interested in being part of this project, please contact Zandra at neo@nzdsa.org.nz and we will send you a list of questions that you could have a look at. We will organise a Zoom meeting where you can tell us your life story. You are welcome to bring a support buddy or whānau member to this Zoom session.

Hope to hear from you soon!

• • • • • • • • • • • • • • • • • • • • • • •

PAGE 47

Lottery Grants Board COGS: Christchurch COGS: Rodney/North Shore COGS: Hamilton COGS: Auckland City COGS: Coastal Otago COGS: Manukau COGS: Waitakere City COGS Southland COGS Manawatū/Horowhenua COGS Whangarei Holdsworth Charitable Trust Eastern & Central Community Trust Te Whatu Ora — Health NZ Ministry of Social Development Joyce Fisher Charitable Trust Pub Charity Rata Foundation T G Macarthy Trust Lion Foundation Grassroots Trust Southern Stars Lindsay Foundation

All Aboard!

The CDSA spent a day at the Halswell Mini Trains.