CHAT 21 Autumn 2021

CHAT 21

Journal About & For The New Zealand Down Syndrome Community

ISSUE 85, Autumn 2021 ISSN 2744-4635

Our People

Aria Morgan at Junglerama having fun in the ball pit

Ayda Bang doing her road patrol at school

Edwyn Cooper

Sienna Allen

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Contents STAR-STUDDED ZOOM PARTY CELEBRATES WORLD DOWN SYNDROME DAY 21 4 WELLINGTON WORLD DOWN SYNDROME DAY DISCO 6 WAIRARAPA COLLEGE HAS CAKE FOR WDSD 8 WDSD IN WAIUKU 9 WORLD DOWN SYNDROME DAY WALK 2021 10 AUCKLAND DANCES THEIR WAY THROUGH WDSD 12 CANTERBURY COMMUNITY SAILS ACROSS THE HARBOUR 14 OTAGO DSA GOES RIDING IN BALCLUTHA 16 TARANAKI DSA HEADS TO THE BEACH 17 LINDA HANDS OVER THE REINS AFTER 17 YEARS 18 ALEX JOHNSEN – SINGER, SONGWRITER AND WAIKATO ROCKSTAR 20 YOUNG ADULTS PUSH THEIR BOUNDARIES AT NZDSA YOUTH DEVELOPMENT CAMP 22 EDWARD HAS GONE FLATTING 25 OUTWARD BOUND ADVENTURE 26 A HELPING HAND AND A SHOUT-OUT ONLINE NETS GLEN HIS FIRST JOB 28 COURTNEY RACING AROUND CAMBRIDGE CYCLING FESTIVAL 30 HELPING OUR FRIEND GET ORDAINED 31 LAURA'S SOAPS 32 CANTERBURY DSA GOING STRONG FOR FOUR DECADES 33 SO WHAT DOES THE NZDSA DO FOR YOU? 36 PICTURE THIS 40 LOCKDOWN INSPIRES MEGAN TO FUNDRAISE FOR SPECIAL OLYMPICS 42 UPCLUB MEMBERS TEST THEMSELVES AT ANNUAL CAMP 44 OPPORTUNITIES APLENTY FOR FAMILIES TO SOCIALISE 45 IHC LIBRARY 47 CLEO’S BOOK 48 NZDSA NOTICES 49 CONTACT DIRECTORY 50 OUR PEOPLE 51 ME AND MY PET 52

From the Editor World Down Syndrome Day 2021 was one to remember.

The NZDSA introduced a new way to connect the community from all corners of the country through the BIG CONNECT zoom call which also included Minister Carmel Sepuloni and other high-profile guests.

More importantly, we were able to again meet in person to celebrate the day with discos, walks on the beach, boat trips, picnics and horse riding, which was a wonderful treat after every region had to cancel their events a year ago.

DSI president Vanessa Dos Santos, in her message to the BIG CONNECT, reminded us all how lucky we are in New Zealand to have community events, while most of the world still has strict restrictions on public meetings.

This edition of CHAT 21 will have a large section on World Down Syndrome Day, with photos from many regions, so we hope you enjoy having another look. In this record-sized edition you will also find a multitude of stories from people of all ages in our community doing amazing things, at work, at school, with their clubs or their families.

We have two reports on the NZSDA Camp and the Upclub camp, and have provided a list of social clubs that people with Down syndrome may enjoy to learn new hobbies and make new friends.

In this edition we also say goodbye to Linda te Kaat who has been a loyal servant for the Down syndrome community for 17 years and we are introducing three new part-time staff members who have joined the NZDSA to support our families. Plenty to read for everyone, so hope you enjoy the stories.

And of course don’t forget to send us your stories for our next edition.

Coen Lammers editor@nzdsa.org.nz

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

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

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STAR-STUDDED ZOOM PARTY CELEBRATES WORLD DOWN SYNDROME DAY 21 Over 100 families joined the BIG CONNECT, which may be New Zealand’s largest zoom call, to celebrate World Down Syndrome Day. The global theme for World Down Syndrome Day asked people to connect in response to the COVID restrictions which have impacted the disabled community particularly hard.

“In response, the New Zealand Down Syndrome Association (NZDSA) decided to invite families from around the country to connect on zoom, which has become such a big part of life in the past year,” says Zandra Vaccarino, the National Executive Officer of the NZDSA. The response from the community around the country to join the party has been overwhelming and the event was made even more special by the Minister for Disability Issues, Carmel Sepuloni addressing the families.

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“We were honoured by the Minister taking the time on a Saturday night to talk to our community who appreciated her recognising that people with Down syndrome are an integral part of our society and achieve incredible successes each day,” says Vaccarino.

Minister Sepuloni was the first of several highprofile guests to appear on The Big Connect, along with Paula Tesoriero, the Disability Rights Commissioner, and Vanessa dos Santos, President of Down Syndrome International.

Tesoriero pointed out that the challenges of the past year had created new ideas and that nobody would have thought about a mass zoom call 12 months ago.

Dos Santos spoke through a video message from her home in South Africa and said New Zealand was the envy of the world, as Kiwis are able to celebrate World Down Syndrome Day with other families, while many other countries are still in lockdown.

The NZDSA patron, Her Excellency, The Right Honourable Dame Patsy Reddy, Governor-General of New Zealand sent a message congratulating the association on its 40th anniversary of providing information, support and advocacy that “has enabled people with Down syndrome to exercise their inherent rights as citizens and feel empowered to participate as active members of their communities”.

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WELLINGTON WORLD DOWN SYNDROME DAY DISCO

By James Webber We were so happy to hold a disco for World Down Syndrome Day this year.

Last year we were all set to go but needed to cancel at the last minute due to the Covid-19 lockdown.

We had a great turnout at the Newlands’ community centre, including some people from the public who just popped in to see what we were doing.

As parents arrived we had barista coffee, chocolate brownies and some colouring in for the kids. But the main event was in the hall where we had great lights, a smoke machine, balloons and glow sticks.

Our DJ played tunes throughout the afternoon and did an awesome job of reading the room and playing age appropriate songs.

Erin and Amelie came in to give some dance tips and really got the group rocking.

At 5pm we connected into the NZDSA Big Connect.

It was a little hard to hear but we were there in spirit and all munched down on some pizza.

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It was lovely of the NZDSA to provide a cake for their 40th birthday and we all enjoyed eating that.

After getting refuelled it was back into the dancing.

Everyone seemed to leave very happy.

Some kids were really stoked to get spot prizes for their dancing efforts.

We were also really impressed with Alex and Ava’s effort to come all the way over the hill from the Wairarapa.

Many thanks to Deborah Jones for her huge effort to run such a successful event and the NZDSA for the cake that you supplied (Happy 40th Birthday!).

Also big thanks to DJ RayDeo (aka Ray Heron) for your great sounds, and Erin and Amelie from Instep Dance Studio for teaching us some great moves.

And of course thanks to the WDSA committee and helpers for making the afternoon a big success.

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From left Bridie & Sienna Allen, Ava Saba, Matt White (back), Rhion Cobb, Patrick Davis & Alex Walsh

WAIRARAPA COLLEGE HAS CAKE FOR WDSD

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NZDSA Regional representative Bridie Allen was invited to Wairarapa College by parent Heather Walsh to visit the Supported Learning Centre (SLC).

Heather has created a tradition of bringing in a cake to share and celebrate World Down Syndrome Day (WDSD) every March. Her son Alex is an enthusiastic and musically talented student with Down syndrome at Wairarapa College.

The class sang Happy Birthday to acknowledge the 40th anniversary of the NZDSA, shared the cake and recognised the fact they were fortunate to connect face-to-face this year for WDSD. The group was joined by Matt White (Principal of Wairarapa College), Amanda Kawana (Head of Department for SLC), Wills Harbord (Head Boy), Sophie Cusack (Deputy Head Girl) with all the staff and students of the SLC. It was a really positive event, with lots of smiling faces.

WDSD IN WAIUKU

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In Waiuku, the local community also organised a WDSD picnic.

Visitors were encouraged to wear colourful, mismatched and unique socks, bring their own picnic lunches and enjoy some outdoor games together.

WORLD DOWN SYNDROME DAY WALK 2021

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The Northland Community came together to celebrate WDSD on Saturday 20th March.

The sun was shinning with no COVID or tsunamis in sight. Families, friends, and volunteers gathered from far and wide to do our “Lots of Rocks” Hatea Loop Walk.

A wonderful crowd of 250 came along to support our walk, people dressed in our Northland Support Group colours (purple and orange) to mark the occasion.

There were happy faces, music, hotdogs (RRT), coffee cart guys, plants, free giveaways and prizes for best dressed. Even dogs came dressed in purple and orange.

We had painted rocks for the children to place around the Loop Walk as you can see one even made it to a hole in a tree. The Loop Walk takes approximately an hour to walk. It's 4.2kms long and one of our young adults with Down syndrome, Charles, said we should call it "lots of stops."

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AUCKLAND DANCES THEIR WAY THROUGH WDSD 12

T h e Au c k l a n d D ow n sy n d ro m e community gathered in a variety of places to celebrate World Down Syndrome Day, from public events to private parties, and shared their celebrations on their local social media.

Molly Dennis and Laetitia Tan are two teenagers superpowered by Down syndrome. Between them, they conceived an idea to have a dance event to celebrate World Down Syndrome Day. Their idea culminated with Get Down And Dance - A Celebration of Diversity, a family fun event which was held by the beach in Orewa, Auckland.

It was an incredible morning, enabled t h ro u g h t h e s u p p o r t o f g u e s t performances, generous sponsors and the community rocking up for the party and truly reflecting the diversity of our society.

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CANTERBURY COMMUNITY SAILS ACROSS THE HARBOUR It was a magical bluebird World Down Syndrome Day for the families of Canterbury as they embarked on an adventure to Quail Island, departing Lyttelton on the Black Cat and headed across the harbour.

A lovely smooth trip across was enjoyed by all, personalised treat bags were handed out to all the children and siblings before they disembarked on Quail Island for a family picnic in a beautiful cove.

Mum and Dad had sweet treats too. Everyone enjoyed their picnic lunch, had time to relax, time to chat together and explore some of the Island, with some even having a swim.

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It felt like we had travelled a long way from town, but in reality it was half an hour across the harbour, just beautiful.

We ended the day with a fabulous rendition of Happy Birthday for Riley who had kindly shared his birthday with us, on the voyage back to Lyttelton and a group photo.

Our special thanks to The Blogg Charitable Trust, AllGood&Co, Black Cat Cruises, NZDSA and the CDSA Committee.

Special treats for all the children

Joshua, Sonja and their dad

Keith, Claire and Ethan

Riley hanging out

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OTAGO DSA GOES RIDING IN BALCLUTHA 16

The Otago Down Syndrome Association enjoyed a wonderful WDSD with the Equine Life Skills academy.

Th e c h i l d re n h a d l o t s o f f u n dressing up the horses and some riding after lunch.

The lunch was cooked by the Balclutha Lions club with the help of the Van Schalkwyk family, who supplied salads and desserts and served everything up for us.

We a re a l s o g ra t e f u l t o t h e Southwest Roast coffee cart on site who donated 10% of their takings back to ODSA. There were some tired kids that evening….

TARANAKI DSA HEADS TO THE BEACH 17

Ta r a n a k i D o w n S y n d r o m e Association celebrated WDSD 2021 with a walk along the sea shore.

The walk started at the New Plymouth Wind Wand and finished up at Petite Plage outdoor Cafe at east end beach.

We a l l h a d a ve r y e n j oya b l e afternoon, relaxed, caught up, and some of us finished off the afternoon with some dancing.

LINDA HANDS OVER THE REINS AFTER 17 YEARS Linda te Kaat has been a key part of the NZDSA family, providing the administrative backbone for the organisation for 17 years. Last month she handed over the baton to spend more time with her family and especially her new grandson. In this farewell letter, Linda reflects on the journey she made with the NZDSA. On 7 February 2004 I started working as the National Administrator for the NZDSA and now 17 years later it is time to leave. It was a big decision to make but I have decided it is time to spend more time for me and my family and our gorgeous grandson William (Bill) who was born in June 2020.

During my time I have attended youth camps, forums, workshops, a conference in Sydney, many committee meetings and been part of a hardworking team.

I have also been extremely fortunate to attend the NZDSA Achievement Awards at Government House on many occasions and had the pleasure of meeting four of our Governor-Generals and on one occasion Prince Andrew when he was in New Zealand and joined our ceremony which was definitely a highlight for me.

Not too long after starting in my position it became clear that the NZDSA was not in a good financial state and at the time closing our doors was on the cards.

Zandra Vaccarino and I had to reduce paid hours, but still work long hours to try to get the organisation into a better position.

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With the help of a couple of wonderful supporters and a lot of funding applications we were able to get the organisation back to a healthier position and the NZDSA survived to be what it is today.

I am immensely proud to be part of the team that over the last 16 years has raised over $3.7 million for the organisation in grants, donations and fundraising.

This has all been used to produce the quarterly journal, new resources, staff to keep the organisation going, STRIVE, youth camps, operational expenses, a new website and database and everything that goes into making the organisation the success it is today.

The last 17 years has been an amazing journey and I have met the most wonderful people along the way – many who will be lifelong friends.

I thank Zandra, Jess, Coen and Daniel – it has been a pleasure working alongside you and the NZDSA is extremely fortunate to have such passionate people working for them to ensure better lives for people with Down syndrome and their families.

I thank all the people that have served on the NZDSA committee – this is all voluntary and without them the organisation would not be able to run.

I also want to take this time to thank my family for all your support – sometimes the crazy hours I have worked, supported me and kept the household functioning, while I travelled to meetings, forums, workshops etc and been there for the highs and lows.

I also would like to thank the people that have sent me messages wishing me well for the future and for the beautiful flowers from a lovely parent (you know who you are). Thank you so much everyone for everything.

New faces at the NZDSA, The NZDSA has recently welcomed three new part-timers to our team who now introduce themselves to our community.

younger sister Georgia who has Down syndrome.

I have been working and volunteering in the disability space since I was a teenager. Previously, I worked as a youth worker, and I also ran a startup working with young people with intellectual disabilities.

Last year, I graduated from the University of Canterbury with a Bachelor of Arts degree, majoring in Political Science and International Relations, and Māori and Indigenous Studies. I am excited to come on board with the NZDSA and work with an organisation whose values I share, and whose work I am incredibly passionate about

Rose te Kaat Kia Ora I am Rose te Kaat, the new part-time National Administrator and Finance Officer for the NZDSA. I will be taking over from Linda, so I have big shoes to fill.

I am from Christchurch. After meeting my husband several years ago, I got introduced to my beautiful sister-in-law Kelsey.

Since then I have been fortunate to be involved in several Down syndrome events including youth development camps, as a support buddy.

Recently I have proudly become a Mum to our wee boy Bill (9 months old).

My background is in healthcare and more recently health management. I am excited to be part of the NZDSA community and join the NZDSA team that have recently celebrated 40 years.

I look forward to meeting new faces, to support and help make a difference within your community.

Jess Scarsbrook I am Jess Scarsbrook, the new Social Media and Information Officer for the NZDSA. I have been involved with the Down syndrome community for almost my entire life, thanks to my

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Grace Perry I’m Grace although I have lived in Auckland for the past three years, I’m a Canterbury girl at heart.

Outside of work I like to spend time with my husband and our dogs walking on our local beaches, gardening and working on my stained glass hobby/small business.

Since I was four-years old I’ve been involved with a small community in Christchurch called Marralomeda, which has four houses and an activity centre and is home to nineteen people living with an learning disability.

I loved spending time with the community and often stayed overnight with my grandma who was a support worker. This is where my involvement within the Down syndrome community all began.

Growing up in this environment I saw and heard a lot out in the wider community where I was shocked and upset. From this grew this need and passion inside me to help educate people and promote awareness of Down syndrome in a positive way as well as advocate for the rights and inclusion of people with Down syndrome.

I can’t wait to get to know everyone a bit more – so feel free to reach out and say hi.

Alex in his element singing with Robert Mullen Jnr and Friends

ALEX JOHNSEN – SINGER, SONGWRITER AND WAIKATO ROCKSTAR

By Zoe Braithwaite

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Since a young age Alex Johnsen has loved music.

When he was introduced to Hamilton music teacher Robert Mullen, his musical talents grew and grew, and with his mentor and a group of friends they formed the band Robert Mullen Jnr and Friends Alex’s regular performances in the Waikato, including last year’s performance at Special Olympics New Zealand’s One year to go event, have locals calling him a rockstar.

Alex in his element singing with Robert Mullen Jnr and Friends.

“I got involved with Robert Mullen Jnr and Friends since 2016. In that time, I got involved and our new music is doing well,” Alex says.

Robert Mullen was Alex’s first music mentor and aimed to mentor his ability to express himself creatively through music. After trying guitar, they discovered Alex’s talents lay in singing and rapping.

After mentoring Alex for a month more band members joined, and Robert Mullen Jnr and Friends was born, a fully-fledged band who practice regularly and perform at public events in the Waikato.

When talking about his role in the band Alex says “I’m the front leader in the band and singer, songwriter, I sing and play harmonica and I actually write songs most of the time.”

His favorite part of being in the band?

“The best bit would be performing to people.”

Robert Mullen Jnr and Friends at a local performance

In December Robert Mullen Jnr and Friends performed at the one-year-to-go countdown event for the Special Olympics New Zealand National Summer Games at the Hamilton gardens, treating the local crowd to several songs.

“It went really well, the best bit was the getting along with other people,” Alex remembers.

Some audience members said that Alex and his friends were like rockstars, when asked if this was a good description, Alex agreed.

“Yeah, with me it would be a rockstar and with my mates it would be rockgods.”

When asked what the future holds for Robert Mullen Jnr and Friends, Alex says: “We’re aiming to do a concert.”

Alex also writes and performs as a solo artist across Hamilton.

“For me, I do music also, not just with Robert Mullen Jnr, I do music by myself as well and when I do my music, I’m not just writing songs, I go and do gigs sometimes.”

“My singing and music helps me grow, because I’ve been doing music since about two to four years now.”

Alex Johnsen’s confidence and love of performing is an inspiration to people with an intellectual disability looking to get involved with music. To those who are interested Alex has some great advice.

“I would say follow your heart, follow your

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dreams and if you are scared or shy, don’t worry we’ll make you welcome.”

We’re looking forward to seeing Robert Mullen Jnr and Friends continue to perform and make incredible music in 2021. You can follow them on their Facebook page, Instagram and YouTube channel under the name Robert Mullen Junior and Friends.

Alex singing with Special Olympics mascot Kaha the Kiwi at the One-year-to-Go event

YOUNG ADULTS PUSH THEIR BOUNDARIES AT NZDSA YOUTH DEVELOPMENT CAMP

By Coen Lammers The 14 young adults and many of their parents had mixed emotions when they boarded their flights from all corners of the country.

The participants and their supporters were still buzzing from their amazing experiences during the three-day camp in Long Bay, north of Auckland, but also shed a tear saying farewell to all the new friends they had made.

The annual weekend is one of the highlights on the NZDSA calendar where young adults from all regions in the country are nominated by their local groups to be invited to this fully funded camp of fun, action, laughter and great food.

The change in the mood of the group and the interactions between the young people and their carers between arrival and departure is incredible to watch.

When the group first gathers, most participants are understandably shy and nervous of what they can expect.

Some have never been on a plane, and some had

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never spent a night away from their parents.

Each young person got their own room at the beautiful Vaughn Park, looking out over Long Bay beach.

The parents stayed nearby in another house on the same property, but for some participants even that small separation was a big step in growing their independence.

After the first introductions and getting familiar with their new surroundings the young adults are driven to Xtreme Bowling where they proved to be extremely competitive in their ten-pin bowling and barely had time to eat the pizza on offer.

Saturdays are always action packed at the Sir Peter Black Maritime Education and Recreation Centre (MERC) where the wonderful instructors gently guided the young people through the first steps of rock climbing and abseiling.

Some of the young people were clearly not impressed by what was lying ahead but all showed incredible courage as every participant

The NZDSA Youth Camp is a unique opportunity to learn, for parents and their offspring, and build new networks.

If you are interested in attending at the next camp in late 2021, contact your local NZDSA representative and put your name forward.

What the participants thought of the Youth Development Camp Jared, participant

conquered their fear of heights and abseiled the intimidating wall.

The rock climbing proved to be a bit more challenging but again all participants gave it a real go and many of them managed to reach the top of the wall.

All that activity had created a real hunger, but the Rapid Response Team were there to the rescue and fed the crew a much appreciated lunch of burgers and chips.

In the afternoon, the MERC instructors brought out the archery gear and the participants showed a real knack of hitting the target. For many of them it was the first time they had handled a bow, and they all enjoyed learning this exciting new skill.

After a well-deserved rest, the youngsters dressed up for a beautiful dinner prepared by the Vaughn Park staff, but any extra kilos were quickly worked off when the dining room was turned into a dance floor. The crew particularly enjoyed songs from Mamma Mia and Grease, but all showed their unique dancing styles with a variety of music.

A slightly jaded group arrived at breakfast on Sunday, before heading into an art session to reflect on the weekend and about the new things they had learned.

Several of the parents also commented about their own personal development and how impressed they were with their children trying new things and showing more independence than they had expected.

Most caretakers vowed to use the new lessons to let their children become more independent.

The weekend created some wonderful new friendships and many exchanged details to stay in touch.

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What did you like the best?

Archery.

Did you do anything that was a bit scary?

Playing at a different bowling alley.

How did it make you feel doing something that was scary?

The new things were fun though.

Did you make any new friends?

Made friends but unsure on names.

What would you say to other young people who might want to go to camp?

Go for the rope climbing.

Reuben, participant What did you like the best?

Rock climbing.

Did you do anything that was a bit scary?

Thought the rock climbing was scary.

How did it make you feel doing something that was scary?

Excited and scary, but I’ll do it again.

Did you make any new friends?

I made friends with someone called Glen.

What would you say to other young people who might want to go to camp?

Go on the camp if you want to go on the plane.

Karlin, participant What did you like the best?

The best part about the camp was the ten-pin bowling on Friday night.

Did you do anything that was a bit scary?

The abseiling was a bit scary.

How did it make you feel doing something that was scary?

It was good to do something hard.

Did you make any new friends?

Yes I made new friends, that was cool.

What would you say to other young people who might want to go to camp?

It was a fun experience. I would love to do it again, and come by myself.

me feel nervous but someone helped me by talking me into giving it a go.

Did you make any new friends?

Yes I did, don’t remember their names but made lots of friends.

What would you say to other young people who might want to go to camp?

It is heaps of fun! Heaps of good food – they cook better than mum! Two thumbs up and I would like to go again.

Caroline, STRIVE support person I have really enjoyed being in different roles by being a support buddy and to cheer on everyone that participated in the activities that we have done that weekend. I found abseiling a bit scary at first but at the end of it I really enjoyed it. Don't be afraid to speak up for yourself and think to yourself I can do it and be proud of who you are.

Jonathan Leach, parent

Amelia, participant What did you like the best?

I liked the abseiling the best and meeting new people.

Did you do anything that was a bit scary?

No I was not scared because I have been to the camp before and we did the same activities before.

Did you make any new friends?

Yes I made two new friends Caitlin and Libby and I met up with my best friend Talia there too.

What would you say to other young people who might want to go to camp?

Give it a go. It's great fun working as a team and helping each other and being kind and friendly.

Glen, participant What did you like the best?

My favourite was abseiling. Archery was my favourite too.

Did you do anything that was a bit scary?

Rock climbing, tried once and didn’t like it.

How did it make you feel doing something that was scary?

It got a bit scary going up but not down. It made

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What did you like the best?

Being around other young DS adults, my first time in a group.

Meeting Zandra from the NZDSA and all her support team for the first time. It's been a long time but I have always found the NZDSA extremely supportive over the past 20 years when I have made contact.

Meeting other parents and caregivers.

Conversations.

Watching the enjoyment on their faces when they achieved.

Experiencing how the young adults confront their fears on the abseiling and rock climbing, with vengeance and determination.

Formal but relaxed and considerate.

Did you do anything that was a bit scary?

Attend the camp.

How did it make you feel doing something that was scary?

It made me feel inclusive and part of a team.

Contented. Not alone. Proud.

Did you make any new friends?

Everyone was just wonderful, I would call all who attended the camp as friends (I am a bit of a loner) but yes I intend making contact with a few of you.

What would you say to young people who might want to go to camp?

Go and attend. You will be taken care of. You will have fun. You will make new friends. This is your camp. Lots of food and drinks. Great activities.

Down Write Brilliant

Edward with his flatmate David

EDWARD HAS GONE FLATTING

By Edward Borkin

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My name is Edward Borkin and I have always lived with Mum and Dad, but I was independent when they went away.

I have been working at Pak n Save Botany for the last 19 years as a trolley boy.

I am also a member of STRIVE which consists of members with Down syndrome who help to advocate for people with disabilities. I enjoy being part of it and helping others with disabilities.

Another thing that I am involved with is Special Olympics. I participate in ten-pin bowling, swimming and table tennis.

I have recently moved into a flat with David, he has a disability too. We get on like a house on fire!

We share the chores and help each other. We also share some of the same interests like Coronation Street and music.

I have a support worker and try to be as independent as possible. I do need some help with cooking as it’s not really my forte.

I’m learning to catch the bus to work which will help me to be even more independent.

I’m really enjoying flatting!

Down Write Brilliant

OUTWARD BOUND ADVENTURE

By Jayden Norrish

In January, this year I went on the first youth horizon course which was held by Outward Bound and adapted to suit teenagers with special needs. This was a sponsored course organized by Outward Bound.

We got up early and travelled to the Auckland Airport where we met with Danielle from Recreate and four other kids that were coming on the course.

It was my first time on the plane without Mum and Dad, but it was fun I slept the whole trip to Blenheim.

When we landed, we had to travel in a van to Picton were we met with another group of five kids from Wellington.

We all made our way to Outward Bound camping ground in a boat, where we unpacked our bags and made our beds.

We met the instructors who were going to be helping us on the course and had a tour around Outward Bound.

I stayed four nights and five days there and did lots of fun activities like, sailing, kayaking, swimming, making fires, high ropes, cooking,

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carving a knife from a stick, and even spent a little bit of time in the bush by myself to think about things.

Every morning we got up at 6.30am and had to go on a run and then a swim before we could have breakfast.

I liked the sailing and kayaking the best and saw stingrays and jellyfish in the water.

I did not like the high climbing ropes in the trees.

Another fun thing we did was bombs off the wharf into the water.

The people were nice at Outward Bound, and we had yummy food like burgers and fish for dinner which we all had to help cook. We even got dessert (Apple Strudel).

After dinner we had to do dishes and then went on walks along the beach. Some nights we had a fire and sat around this.

Five days came to an end very fast to get home we went in a waka and paddled all the way to Picton where we said our goodbyes to friends we had met.

I would love to go again as I had so much fun.

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Me and My Job

Glen with his boss, Gilmours Hamilton owner-operator Dayne Riddell

A HELPING HAND AND A SHOUT-OUT ONLINE NETS GLEN HIS FIRST JOB

By Libby Wilson The power of social media got Glen Terry noticed, but it was his enthusiasm for hard yakka that got him into work boots and a high-vis shirt.

The 30-year-old, who has Down syndrome, is proud of the job title for his first mainstream role: store manager's assistant at Gilmours Hamilton.

"It actually warmed my heart when I got offered the position," he said.

“I’d never had a job offer like that, ever... It felt like I was going to be one of the leaders here.”

After a week and a half working in the Te Rapa store, Terry learned the essentials for a good working life.

"As long as I keep the boss happy, I’m happy," he said, with a grin at owner-operator Dayne Riddell.

“It's not just a job for me, it's something I want to do.”

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T h e p a i r we r e c o n n e c t e d by D i s a b i l i t y Employment facilitator Selwyn Cook – and online networking service LinkedIn. Cook hired many people with disabilities when he was running Z service stations, and now helps people with disabilities get into work.

Terry was a client determined to find a part-time job, and said as much in a video Cook shared on LinkedIn. Within a couple of days it had 25,422 views and about 101 comments, including five job opportunities - a response which amazed even Cook.

One offer was from Riddell, who thought Terry seemed like a cool guy and wanted him to come in for an interview. "[The post] had some phenomenal number of

“It's not just a job for me, it's something I want to do," says Glen

reactions ... so I thought he might be inundated with offers," Riddell said. “But Selwyn said I was first to put my hand up and we were able to move quickly to meet with Glen, so we could take him off the market.”

Terry soon had an employment contract for three days a week and a list of tasks to keep the shop tidy.

He got through it faster than expected, so Riddell's looking to add tasks, including stocking shelves, labelling special offers, and helping customers find what they need.

“His diligence and his personality and his approach to people, I think, will be a good asset.”

Riddell is a wonderful boss, Terry said, and the pair already bounce off each other.

Terry's first pay is due this week, and he wants to save up for something expensive – maybe a new Playstation. ”I thought you were going to say three kilograms of Gilmours chocolate buttons,” Riddell replies. ”Do you really want me to get that big?” Terry retorts. “I want to be fit enough for this job.”

While Terry has worked in the disability sector - for example, he's on a Government disability advisory group – this is his first mainstream job.

And he has a message for other people with disabilities who are looking for a break.

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“If I can do it, you can do it, so good luck.

“Just get out there, start looking.”

Each work-day he catches the bus to the Base, then walks the 20-or-so minutes to the Gilmours store.

Terry's job isn't charity, Riddell said.

It's a win-win, and he's already proven himself very capable.

The job is a big thing for Terry and his family, Cook said.

“I’ve been overwhelmed by the support from the Waikato employers to show that they want to support not only Glen but now others like Glen.”

“I've just really got a passion and a commitment for this work.”

Because Cook is self-employed, he has full control over his approach, and prefers to create opportunities instead of waiting for vacancies.

“Many disabled people, responding to an ad that needs to be filled in two weeks, it doesn't always work. You're up against a hundred other people and it's not easy.”

Copyright: Stuff

Down Write Brilliant

COURTNEY RACING AROUND CAMBRIDGE CYCLING FESTIVAL

By Sue Duncan Courtney is 25 years old, and due to her vision and depth perception, has never mastered a twowheeler bike on her own.

However, for the last 15 years she has ridden a trike and while still at school she rode it most days to school and home, two kilometres each way.

In high school she started riding it with the school cycle group at the velodrome and became very proficient on the track.

Some of the paracycling staff acquired a tandem cycle for her to try and she has not looked back. Courtney is the engine and the pilot is the navigator.

Eventually, former Olympic cyclist Fiona Carswell replaced the trainer pilot and they rode regularly mixed in with the other cyclists on a public track racing night.

Courtney moved outdoors and started tandem road cycling as well. Four years ago Courtney competed in an 11km race as part of the cycling festival, but then the festival missed a year.

By the time it returned Courtney had stopped

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doing track but had a new road partner, Abigail, and they did weekly rides out of Cambridge.

Last year the festival returned and they did the 18km race, she was first woman home and second overall. At the time they only had 18km or 100km.

This year they added a 67km race so Courtney and Abigail have been training for that.

On February 13, Courtney and her pilot Abigail completed the 67km race that included a hill climb of 628m, in a time of 2hrs 36 mins, much faster than they expected.

They placed 102nd out of 186 riders. Now they are considering doing the 103km race next year.

Naturally, Courtney’s family is incredibly proud of her.

Unfortunately she just misses out on qualifying for paracycling because the DS doesn't count, just her vision, but after years of working with Vision impaired support and the Blind Foundation, she is not considered blind enough for the Paralympics.

Go figure.

Reverend Robyn, me, and my dad Reverend Franco

HELPING OUR FRIEND GET ORDAINED

By Vincenzo Vaccarino

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Our friend Robyn Appleby from All Saints church in Palmerston North was ordained in Wellington.

Me and my dad went to Wellington on Friday afternoon to practise the service.

On Saturday the Anglican Cathedral of Saint Paul was crowded. My dad said there were 800 people there.

We watched Robyn and other people walk to the altar. Bishop Justin and Bishop Eleanor lead the special service.

Me and my dad sat with other people from All Saints church. Then me and my dad went to the front of the cathedral.

We stood behind Robyn and me and my dad presented our friend Robyn to the bishops. The bishops ordained Robyn, and she is now a priest.

After a long service, we had a lovely lunch and we took some photos.

Me and my dad stayed in Wellington on Saturday night. We went home on Sunday afternoon. We had a great weekend.

Me and My Job

LAURA'S SOAPS

By Laura Harkins My name is Laura Harkins and I have been making soaps for about 2 years now.

My Mum Jenny helps me with ordering and sourcing ingredients and she helps me with labels and adding new products and also helps me at the Markets.

I love making different soaps and using the many beautiful fragrances which are available.

I like to use products which are sourced and produced as naturally as possible and my ingredients are purchased from New Zealand companies.

I also work on a Monday and Wednesday at AllFit gym in Beachlands and I make my soaps when I have spare time during the week and weekends in between my work and swim training.

I have made many soaps to order especially when someone wants a particular fragrance in a soap. I have sent my soaps all over NZ and many countries overseas.

Recently I did a big order of soaps for The Baby Bag for a fundraiser for Plunket.

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My Mum and I are constantly sourcing new fragrances to add to my soap products.

My soaps are popular gifts for Teachers, Mums, Grandmas, Aunties, Cousins, Friends, Uncles and Grandads and of course yourself because you are worth it!

Recently, I have added to my products with Wax Wraps and Bath Salts in different fragrances and Shaving Soaps in tins.

I enjoy making my soaps very much, it keeps me busy and people who buy them tell me that they enjoy using them and giving them as presents to their friends and family, which makes me feel good.

I have had stands at Clevedon Market, Buddy Walk and the Illuminate Night Market.

All soaps weigh 100 grams and are $6.00 each plus postage I can make up gift boxes for an extra cost. The best way to order is through my email address - harkins.lauraruth@gmail.com Instagram - laurassoaps

Regional Focus

CANTERBURY DSA GOING STRONG FOR FOUR DECADES Donna Higgs has been the Regional Co-ordinator for the Canterbury Down Syndrome Association Committee for nearly a decade and looks back at where the CDSA came from and where it is heading.

In 2012, I stepped into the shoes of Angelique van der Velden as Regional Coordinator. Angelique, who is still a committee member of the CDSA and NZDSA has been an amazing contributing member of the CDSA for over a decade.

In that time I have worked with many wonderful people in the Christchurch Community. Recently, I came across a business plan written in 2009 and before I tell you more about the current CDSA, I would like to look back at some of the early history as it was described in that 2009 document.

In 1985, the Canterbury Downs and Special Needs Support Group started and organised socials, a library and provided information and support to the families of children with DS. In 2000 this group became known as the Canterbury Down Syndrome Association and continued to organise monthly socials for families and an annual Christmas party.

In May 2005 a separate group was launched called the Canterbury UPP Club, a peer support group for teenagers and young adults with DS and is run by a paid Programme Co-ordinator.

In September 2008 the CDSA became incorporated, with governance and support by volunteers and continues to provide information

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Mums at 2020 Christmas party

and support to the families of children with DS through quarterly socials, a quarterly newsletter, coffee evenings, an advocacy service, a Christmas party and weekly football sessions over summer with Halswell United AFC. We are an organisation of 96 families (2009), each with a child with Down syndrome and are governed by an elected committee currently with 9 members.

T h e 1 0 - ye a r g o a l i s c o m p l e t e f i n a n c i a l independence.

Financial independence for the CDSA is the ability to fund advocacy for individual families, a d m i n i s t ra t i ve a n d c o m m u n i t y s u p p o r t objectives.

Major education and advocacy events will be expected to be cash flow neutral or in the case of events for professionals cash flow positive.

For 2010 onwards we aim to be $10,000 cash flow positive allowing us a financial base to underwrite an expanded education program.

As we are now preparing for World Down Syndrome Day in 2021, for me personally it gives me great pride to see the dedication of the past and present committees continuing to deliver the original vision of 2009.

We now have a current membership of 156 families, a committee of 11, a beautiful new logo and website designed by Dan te Kaat.

Dan also designs all of our flyers for workshops and events. Dan has been a member of the CDSA committee for 9 years, over this time has

PJ Disco

Christmas 2020 hosted by Mike Dormer

contributed generously to the CDSA community.

Our current treasurer Bronwyn Ziolo, with the support from a past chairperson Diane Mulholland, have brought the CDSA committee into a strong position to manage funding, auditing and grant tracking.

A large part of my role is to manage the funding, auditing and outcomes for the CDSA Committee.

I have been fortunate to be supported by two wonderful treasurers, Maree Docherty and Bronwyn Ziolo.

CDSA Committee and STRIVE member Andrew Oswin and myself started data cleansing in early 2020, but we had no idea that the work we had done would be so valuable when lockdown arrived.

Andrew volunteers each year and this year Andrew's new goal is to scan files from the past 10 years and to help me update our drive.

Andrew has wonderful attention to detail and I value his contribution to the CDSA committee so much, also he is great fun to work with.

If you wish to join the Canterbury membership contact us on cdsainc@gmail.com The editor of Chat 21 asked me to tell you about Canterbury, so I thought I would give a look inside the past year.

Lockdown was spent contacting our members on the email network and phone, offering updated information and generally just checking in for a chat.

We then moved onto committee zoom meetings where we identified the changes in funding and developed a new plan for the year looking at how

we could continue to provide the support our community needed.

Looking back, we nearly achieved everything we had planned, just in a different way.

Of course, with exception for the social events that needed to be cancelled during lockdown including World Down Syndrome Day 2020.

As lockdown ended we decided to move full steam ahead for the year, starting with a visit from Maree Kirk who spent a day with us meeting teachers, teacher aides and parents and discussing the bespoke resources available in our library for loan.

We even had a visit from our newest and youngest member for 2020 baby Jonty Bailey.

Maree hosted three seminars throughout the year, five days in total.

Supported Teaching Practice for Children with Down Syndrome and Learning Disabilities (STPDS) which includes the topics of Universal Design for Learning, Numeracy, Literacy, ICT and Transition to School.

Socially we needed to be creative ensuring we were hosting events within the COVID level restrictions.

This took extra planning and managing, but we felt it was important to ensure a safe environment for families to connect.

We hosted a PJ Disco party with our wonderful DJ Josie Noble, which was attended by a large number of young adults. They danced the afternoon away and it was a delight to see all the young people face to face again.

We love your playlist Josie, it is spot on.

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The Sony Camp

The fundraising also began immediately, with a fundraising evening hosted by Lighthouse Brewery.

A percentage of takings were donated by The Chippy and Lighthouse Brewery, the two local businesses who supported the event, providing raffle and chocolate wheel items.

The biggest surprise of the evening was lots of socks and gold coin fundraising donations from a local school.

Next on the calendar was a Quiz Night hosted at The Elmwood Tavern, where the committee pulled together to help with the selling of tickets, and the gathering of raffle and auction items.

This year we also had a collaboration project with the year 13 students from the Villa Maria College.

AllGOOD & CO developed a trio of socks with the artwork of a local young member, and a percentage of sales being donated to CDSA. It was a magical year of donations from a range of businesses and schools, not something that we had at all expected.

Towards the end of the year we hosted two information evenings, one with Joanna Hannah from Parent to Parent on Individual Education Plans and Bridget Snedden who spoke about Conversations that Matter.

Maree and Bridget also fitted in a quick visit to the Champion Centre and were my guest speakers at the CAN meeting.

Our CDSA Strategic Planning Meeting was held with Trish Hughes, Community Operations Manager from The Department of Internal Affairs/ Te Tari Taiwhenua.

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Shelley and Rochelle Waters are two committee members who held a wonderful coffee catch up in Rolleston for the members in the Selwyn District.

Patrice, another committee member, hosted a family morning at He Puna Taimoana during the school holidays.

On top of all that we also helped facilitate information and registrations for: The Special Children's Christmas Party, The New Zealand D ow n Sy n d ro m e Yo u t h C a m p, T h e S o ny Foundation Camp and The Willows Christmas Party.

In between we also ensured some Professional Development with Barrer and Co via Zoom and Governance Bites with Volunteering Canterbury.

The Regional Coordinator attended and hosted the CAN meetings throughout the year as well as attending the committee and regional zoom meetings.

As per tradition, we ended the year with The Willows Christmas Party, hosted by Mr Mike Dormer and The Willows Cricket Club who have spoilt us for over a decade now.

We have connected with a range of parents and educators over this period, met new families, created new connections as well as support.

We have provided advocacy and information through our network email database and social media, updating the membership with important community information.

To top it off, we had a lot of fun along the way.

NEO notes

Celebrating Waitangi Day with our patron Her Excellency, Right Honourable Dame Patsy Reddy

SO WHAT DOES THE NZDSA DO FOR YOU?

National Executive Officer Zandra

The NZDSA work programme is driven by our mission to work alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities.

The NZDSA’s mission means that the scope of our work is broad, but the guiding principle is to provide support, information and advocacy at a national level.

Our members might be familiar with our 0800 number, our website, CHAT 21, E-news or our social media platform but be less aware of the work that we do at a national systemic advocacy level. National systemic advocacy work might not always be visible, it can be time-consuming and achieving outcomes can be slow, but it is extremely valuable as it is the means to influence changes in policy and processes so that all people with Down syndrome can benefit and enjoy more

equitable access to the same rights as all New Zealanders.

Some of the NZDSA’s national systemic advocacy work includes attending national stakeholder meetings to ensure that people with Down syndrome and their family and whānau are represented.

We collaborate with other organisations so that we can keep our members informed of current issues, collaborating to promote inclusive practices and working on submissions so that people with Down syndrome and their family and whānau are considered in decision-making.

Recent examples of the NZDSA’s national systemic advocacy include: • The NZDSA collaborating with People First and the Donald Beasley Institute to prepare a submission on the Courtappointed Communication Assistance Quality Framework – consultation.

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Vaccarino is frequently asked what the NZDSA does. To provide some more clarity she will share in each 2021 edition of CHAT 21, some of the things that the NZDSA does.

Dr Caroline McElnay, her husband Giles Pearson and Zandra

•

•

The NZDSA attending the Abuse in Care Royal Commission of Inquiry which I have reported on below.

The ongoing advocacy work we are doing in the COVID-19 space which I have also shared below.

A key aspect of national systemic advocacy work is to engage with our members to find out how they feel about a particular issue, but often the turnaround time for consultation and feedback is very short and the only means to share and gain information is via E-news.

Unfortunately, not everyone reading CHAT 21 has shared their email address with the NZDSA so we cannot share important information with you or gain your thoughts on issues.

The best way of updating your information is to check your membership details via our website.

We also encourage you to share with all your friends that joining the NZDSA is free and very easy - all you need to do is complete the registration form on our website.

The more people we have on the database the more people we can consult with to ensure that we represent your voice when we engage in systemic advocacy.

Please share your thoughts regarding an independent review into primary school staffing which NZEI Te Riu Roa has commissioned.

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Dr Siouxsie Wiles and Zandra at Government House

Submissions are open until the 12th April and we will be asking our members via E-news to share their thoughts with us on this topic.

COVID-19 It is just over a year ago that New Zealand moved to Alert Level 4, and the entire nation went into self-isolation.

Since our first lockdown we have adapted to living and working in different alert levels and whilst we hoped to be free of the tyranny of the virus we still find ourselves bouncing between alert levels and needing to find ways of moving forward in these turbulent times.

The NZDSA has kept monitoring the impact of COVID-19 on people with Down syndrome to ensure that we can advocate effectively for our membership. The research is indicating extremely disturbing health outcomes for people with Down syndrome and learning disabilities, so the NZDSA decided to take a cautionary approach to faceto-face events and we will only host events when all of New Zealand is at level 1.

Unfortunately, this meant that once again we could not meet to celebrate our favourite event, World Down Syndrome Day. We wanted to celebrate by aligning with the 2021 WDSD theme “Connect” so we decided to go virtual with the Big Connect.

The Big Connect was a great way to connect

and celebrate with everyone in New Zealand and perhaps it is something we should do more often.

The NZDSA has written to the Hon Chris Hipkins, Minister for COVID-19 Response, and the Ministry of Health to advocate for people with Down syndrome to be on the priority list for the vaccine.

We are also aware that all our members will want to have more information about the COVID-19 vaccine so that they can make an informed decision. We will collate relevant information and share this with you via E-news and social media.

At the Waitangi Day Celebrations at Government House I had the opportunity to have informal conversations with Dr Siouxsie Wiles and Dr Caroline McElnay to thank them for all the work they are doing in the COVID environment and to remind them that learning disabled people and particularly people with Down syndrome, should be identified as a priority group for the vaccine.

We were also pleased to report that our application to the Lottery COVID-19 Community Wellbeing Fund was successful.

We didn’t receive all the funding we required but the funding we received will contribute to the costs of developing a wellbeing resource for our community.

Andrew Oswin presenting the STRIVE's Succession Plan 2

Abuse in Care Royal Commission of Inquiry The NZDSA recently attended a hui with other leaders from the disability sector to share our views on how the Royal Commission of Inquiry into Abuse in Care can engage with people with learning disability, neurodiversity and cognitive impairment to share their experiences of abuse and neglect with the Royal Commission.

A couple of key issues that emerged in the hui is that while the scope of the Royal Commission is on children, young people and vulnerable adults in State and faith-based care in Aotearoa New Zealand between the years 1950-1999, the Commission also wants to hear about survivor experiences before and after these dates.

The other key issue is that neglect is included in the scope of the inquiry. Many people in our community will be able to identify with neglect which is defined as failing to meet needs. The scope of the needs includes physical, emotional, medical, educational, spiritual, and cultural.

I am aware that members report incidences of the needs of their child not being met, particularly in health and educational settings. I would encourage you to attend hui in your community

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Andrew and Linda cutting the cake to mark the NZDSA's 40th anniversary

to find out more about the inquiry.

The NZDSA will use E-news and social media to keep you informed about how you can contribute to the enquiry.

The information gleaned will inform the Royal Commission to make recommendations in 2023 to the Governor-General on how New Zealand can better care for children, young people and vulnerable adults.

40 years NZDSA T h e N Z D SA N a t i o n a l C o m m i t te e m e t i n Christchurch on the 27th and the 28th February 2021 to plan for the year and to progress our work programme.

The committee meeting was also an opportunity for the regional zone representatives on the national committee, the staff and a STRIVE representative to meet with the Christchurch Down Syndrome community to celebrate the NZDSA’s 40th anniversary and to share the work of the NZDSA. The NZDSA hopes to meet with other communities in the country during 2021 to celebrate this milestone anniversary.

It would be valuable to capture the history of the NZDSA in a special feature in our annual report so please send me photographs and special memories to include in the feature.

My email is neo@nzdsa.org.nz

Farewell to an NZDSA treasure The NZDSA committee meeting in Christchurch also included a farewell for Linda te Kaat, the NZDSA National Administrator.

Linda has worked for the NZDSA for over 17 years and has had a critical role in professionalising the organisation, accessing funding for our many projects, supporting the national committee and an even greater support to all our members.

A person who acknowledged Linda said she is a fountain of wisdom. Linda is also a dedicated advocate for people with Down syndrome and is committed to empowering people with Down syndrome and their family and whānau.

She is always making those around her laugh and she goes the extra mile to ensure that the NZDSA is able to deliver ongoing support, information and advocacy.

I t i s d i f f i c u l t to c a p t u re t h e s i g n i f i c a n t contributions that Linda has made to the NZDSA and the wider Down syndrome community. I am sure you will join me in thanking Linda for everything and to wish her the best for the next chapter of her life.

We will all miss Linda tremendously. If you missed the online farewell to Linda and still want to acknowledge her, please email me your message or photograph with Linda and I will collate and forward to her.

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Introducing new team members at National Office Jessica Waters, our social media officer has taken extended annual leave and while she is away, Jessica Scarsbrook will be joining the team to produce the E-news.

Th e N Z DSA h a s e st a b l i s h e d a n ew ro l e : Administration Support Officer.

Grace, a familiar face at Youth Development Camps has joined the team and will be taking responsibility for all the administration tasks related to workshops, seminars, committee meetings and youth development tasks.

Grace will also be involved in other day-to-day tasks and helping with new projects.

We have also made a few changes to the existing National Administrator role and the new title of National Administrator and Finance Officer reflects these changes and Rose, another familiar face at Youth Development Camps, will be responsible for this role. Rose will also be responding to all incoming 0800 calls.

You can read more about the team members in this edition of CHAT 21 or on our website.

STRIVE I want to mention that STRIVE, the NZDSA’s selfadvocacy leadership group, has over the past eighteen months worked on a Succession Plan.

Andrew Oswin, a STRIVE representative, attended the NZDSA Committee Meeting to present their proposal to the NZDSA National Committee for consideration.

The NZDSA will be meeting with STRIVE in the next couple of weeks to respond to the proposal.

In the next edition of CHAT 21 STRIVE hope to share the key points of the Succession Plan.

Lastly, remember to email me at neo@nzdsa.org. nz your nominations for the Rose Awards, share special memories or photographs to mark the NZDSA’s 40th anniversary and if you want to send a message for Linda.

Hei konei rā Zandra

Champion Centre

PICTURE THIS Lauren Porter is the Clinical Director at the early intervention clinic, the Champion Centre in Christchurch and explains how a simple activity can be vital in the early development of a young person with an intellectual disability.

What do you see when you look at two-year-old Louis painting at the easel?

An adorable child? A toddler at play? A creative spark? A fun activity?

Yes. All those things are in the picture. Within an early intervention program like the Champion Centre, we would like you to see more.

There is a picture behind the picture. That background holds a hidden world of neuroscience, child development, relationship-building, sensory experience and scaffolding to achieve motoric milestones.

Play is a child’s work. Play creates meaning and learning. Play is central to brain development and is so important that it is recognized as a fundamental childhood right by the UN High Commission.

According to paediatricians, scientists and child development specialists, play allows children

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to use their creativity in service of developing physical dexterity, imagination, emotional balance, and cognitive skills.

Play allows children direct access to the world around them in a way they can both explore and master. Child-driven play creates a way for children to follow their passions while making new discoveries and enjoyment of their world.

In the first years of life, physical development is a significant foundation for ongoing growth and learning.

This coincides with a burgeoning social and emotional world that is linked to the relationships in a child’s life.

From birth, learning is a process of scaffolding a child’s needs. In other words, learning is about providing support for the child to take the next step toward something they can almost do in a way that allows them to do it on their own.

This not only creates the learning of new skills and information, but develops resilience, problemsolving skills and emotional strength.

The story of Louis at his easel is so much more than first meets the eye.

Louis is a child who is learning to stand. Standing is not easy for him right now. Yet standing is the next scaffolded step in his journey, the thing that will then open the next door and the next challenge and the next discoveries.

The Champion Centre physio needs to find a way to support Louis to stand.

The early childhood teacher needs to find a way to support Louis to enjoy learning.

Louis’ mum needs to find a way to celebrate who her child is now while also helping him to achieve more.

Together – guided by paying attention to who Louis is – they arrive at a deceptively simple solution.

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Louis loves to paint. Painting is play he is passionate about. Painting offers enough fun, interest and enjoyment that Louis will stand without experiencing standing as either impossible or as a form of pressure.

When Louis is at his easel, his mum, the physiotherapist and the early intervention teacher have understood Louis well enough to create an activity that bridges the gap between what he cannot currently do and what they believe is next for him to learn.

He is immersed in a creative, sensory experience that scaffolds his motoric development because he showed them who he is and where he needs to go.

A picture is worth a thousand words. It is perhaps worth far more than that.

Megan and Jeremy

LOCKDOWN INSPIRES MEGAN TO FUNDRAISE FOR SPECIAL OLYMPICS After her son Jeremy was left socially isolated during lockdown, Megan Bray is challenging herself by competing in the Round the Bays in Wellington and fundraise for Special Olympics who helped Jeremy reconnect with friends and the community.

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“I like to tell people that my son is an Olympic athlete” Megan says.

Specifically, a Special Olympics athlete. Jeremy has been training and competing in ten-pin bowling, golf and swimming with Special Olympics New Zealand for the past 15 years.

The 26-year-old was born with Down syndrome, which Megan says has led to difficulties finding activities that he can participate in.

“Jeremy has quite a few health issues and doesn’t speak at all. He likes to spend a lot of time on his own, so it was hard to find activities that he enjoyed and got him to engage with others.”

Finding Special Olympics when Jeremy was in intermediate school was a game-changer, and meant Jeremy was able to participate in sports just like any other student.

“Some of the things I really value about Special Olympics is that he has the opportunity to engage with the community and make friends, along with the exercise” Megan explains.

Training with friends at Special Olympics was part of the weekly routine for Jeremy, until the lockdown in March 2020 halted all public

Megan Bray, with Special Olympics staff Zoe Braithwaite, left, Tristan Mathieson and CEO Carolyn Young, right

gatherings and prevented Jeremy from engaging with his friends and community.

“Over lockdown all activities stopped, and when you can’t use Zoom or message people like the rest of us, your world becomes quite small.”

“He didn’t understand why you can’t approach people or go to ten-pin bowling” Megan says.

The lockdown was tough for Jeremy and when Wellington moved to alert level 1, he was happy to return to training.

Megan explains that Special Olympics was aware of the increased risk of New Zealanders with intellectual disabilities becoming socially isolated and aimed to resume regular activities quickly under new health protocols.

“After lockdown Special Olympics got quite creative doing social distancing and hygiene with people who don’t necessarily understand the concepts and are more at risk from health issues.”

“It made a huge difference to Jeremy when he could resume training, I’m very grateful that Special Olympics worked to keep activities going during this time.”

Megan decided she was going to participate in the Round the Bays in Wellington, and fundraise for Special Olympics New Zealand, a charity partner of the event.

Megan was elated at the positive feedback.

“I’m absolutely thrilled at the response I’ve had to my fundraising page, I can’t believe it.” she says.

Megan’s long surpassed her original goal of $500 and received over $1500 to sponsor her walk in support of Jeremy and Special Olympics.

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Jeremy at training

UPCLUB MEMBERS TEST THEMSELVES AT ANNUAL CAMP The UpClub in Canterbury over summer held their annual camp at Woodend in North Canterbury.

The camp is the favourite event for our members and was once again a fun and adventure-filled weekend away.

This year, the members really challenged themselves and pushed personal boundaries in many activities, such as archery, the flying fox and in particular, the go carts.

However, the unanimous highlight, was hanging out with their friends, and having fun together, especially after such a challenging year.

UpClub is a charitable organisation that offers a peer support-based environment for children, youth and adults with Down syndrome.

Operating out of both Christchurch and Dunedin, UpClub provides members with opportunities to enhance their social and functional life skills while having fun with their peers.

Initially set up as a transitional social group from the teenage years into adulthood, the club has grown over the years and now offers three agedefined cohorts.

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OPPORTUNITIES APLENTY FOR FAMILIES TO SOCIALISE A wide range of organisations around New Zealand provide a variety of social activities for people with Down syndrome and the wider disability community to learn new skills and enjoy camaraderie with new friends.

This section provides a small list of clubs and organisations in the different parts of the country you can contact if you want to try their activities.

National Livewire Free, safe online community connecting teens living with illness or disability, & their siblings, in Australia or New Zealand. Whether you’re home or in hospital, you can make friends, share stories, laugh, have a vent, and be yourself.

The moderated chat is live 2pm-2am every day, plus live streaming, games, videos, comps and more! It’s peer support done differently. www.Livewire.co.nz

Achilles International (NZ) Achilles International is a worldwide organisation providing New Zealanders with disabilities the opportunity to participate alongside able-bodied athletes in local, national and international events to promote personal achievement, and enhance self-esteem and lower barriers. Achilles NZ has chapters all over New Zealand in Auckland, Tauranga, Taupō, Wellington, Christchurch, Rotorua, Hamilton, Dunedin, Invercargill and Whangārei. www.achillesnewzealand.org

Riding for the Disabled New Zealand Riding for the Disabled Association (NZRDA) has over 50 affiliated Riding for the Disabled (RDA) groups located throughout every region of the country.

RDA is all about providing goal-based riding activities that increase the ability, strength and confidence of people with physical, intellectual, emotional and social challenges. www.rda.org.nz

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Star Jam All over New Zealand, StarJam inspires young people with disabilities (our Jammers) to express themselves through music, dance, singing and performance. Our workshops, gigs and discos are fun and exciting spaces for Jammers to grow in confidence, discover musical and performance talents and make lifelong friends. www.starjam.org

Auckland ADSA Social clubs Recreate NZ plan and facilitate the ADSA social clubs. There are two separate age groups that meet at various locations once a month, one for youth and one for adults. To find out more: https://adsa.org.nz/how-we-help/local-supportgroups/social-clubs/ The ADSA also organises regular coffee groups and play dates. The dates and details are shared on the closed ASDA social media, so it pays to sign up to the ADSA.

Touch Compass Touch Compass is New Zealand’s leading professional inclusive performance company!

They work globally with choreographers and directors to collaborate with disabled and non-disabled performers. They also run some workshops in Auckland and Wellington. www.touchcompass.org.nz

Baby Music group Baby Music Group is a playgroup for babies with special needs ages 0-18 months.

It also gives parents/carers a chance to meet and talk with other parents with young babies.

PHAB PHAB organises social opportunities for people with disabilities, and supporting members towa r d s d e s i g n i n g m e a n i n g f u l l i ve s f o r themselves. https://www.phab.org.nz/

Music & Fun playgroup Giving children 18 months to 5 years with special needs and their parents/carers the chance to play and socialise in a fun and supportive environment. Run by Margaret Davidson, retired neuro-developmental therapist and Marjorie Blakeley, retired speech-language t h e ra p i st . Fo r m o re i n fo r m at i o n co n t a c t nzmargaret@gmail.com

Dance therapy Dance Therapy NZ (DTNZ) is a registered charitable trust that provides mental health and disability services. Their kaupapa is to support and empower vulnerable individuals and groups in Aotearoa New Zealand through the use of Dance Movement Therapy and Arts Therapy. www.dancetherapy.co.nz

Wellington Wellington Down Syndrome Association social groups in the greater Wellington region.

Below are a list of different social groups running in the greater Wellington Region

New Parents WDSA New Parrent Contacts We have new parent contacts in Wellington, Hutt and Wairarapa who would love to visit new parents and provide a welcome packs. For more information see https://wdsa.co.nz/newparents or email contact@wdsa.co.nz Wellington Parent to Parent Coffee Groups Parent to Parent Wellington run parent support groups regularly in the Wellington region.

See https://parent2parent.org.nz/wellington/ for dates and more information.

Under 5 Group Ruth Coard has just restarted the under 5 WDSA catchups after a long hiatus. There is a Wellington Young Ones private Facebook group Wellington Young Ones | Facebook and we will advertise the under 5 meet ups on Facebook but if you are interested in the next one please email ruth@ wdsa.co.nz

Wairarapa Group Bridie Allen has been meeting with other families in Wairarapa at various homes. See https://wdsa. co.nz/2020/07/wairarapa-get-together-in-theschool-holidays/ . Email Bridie@wdsa.co.nz for details on Wairarapa catchups.

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13+ Group Blair held the first teenage catchup on the 7th November 2020. We went to a café, went ten-pin bowling and had fish and chips afterwards. It was a huge success, and we plan on doing it again. If you are interested contact Blair 0274 519561

Primary School Age WDSA hasn’t run any school age catch ups for some time but James Webber is keen to change that. For more details contact james@wdsa.co.nz

Sibling Group Sinead is in the process of setting up a Sibling support group. For more information email sinead@wdsa.co.nz Wellington Parent to Parent run regular sibling workshops (SibShop) the last one was Sunday 1st November 2020. https://www.facebook.com/ events/1229900554054687 Young Adults (Down Syndrome Social Club) Previously known as Viva the Wellington Down Syndrome Social club has a fortnightly session every Friday for Young Adults. The sessions are generally in Wellington City, they do activities like go bowling, karaoke, laser strike but also run a camp each year. For more information email vivaclubwellington@gmail.com or see https:// www.facebook.com/vivaclubwelly

Canterbury Jolt Dance Jolt is a Christchurch-based dance company that offers dance classes for all ages and abilities focusing on skill development and performance opportunities. Jolt runs classes for individuals aged 5 through to adult. https://joltdance.co.nz/

UpClub See story on page 40.

IHC Library The Specials, season 2 Tw o y e a r s o n f r o m Season 1, housemates Sam, Hilly, Lucy, Lewis & Megan continue to share a life full of parties, fun & good times. But things can get complicated too and in this new season we follow the gang as they do a whole lot of growing up: from getting engaged, to starting work and in Sam’s case, maybe even finally getting the girl. Simply follow this link to the online catalogue https://ihc.mykoha.co.nz/cgibin/koha/opac-search.pl?q=the+specials and click on the link to view. Enjoy! Season 1 on DVD is also available.

Potty time for kids with Down syndrome: lose the diapers, not your patience

By Terry Katz The guide discusses physical, medical, and behavioural issues that can complicate toilet training children with Down syndrome and offers step-by-step instructions for teaching and motivating children with Down syndrome to communicate the need to use the toilet and become independent in all aspects of using the toilet.

Connecting people: the steps to making it happen

By Clare Wightman If I had to name one thing that would make the biggest difference to the life chances of people with a learning disability it would be good relationships. Not just good relationships with people paid to be in their lives but a network of good relationships with people not paid to be in their lives.

Offers guidance on ways to achieve this.

This resource is an excellent baseline resource.

Easy to read and understand - Practical ideas and sound recommendations. Excellent!

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Autism after the pandemic: a step-bystep guide back to school & work

By James Ball How do we help those with developmental and/or intellectual disabilities and those on the autism spectrum return to school or adult services?

It has been a long haul at home! Both the children and the adults are used to the home environment and routines. Some students have been out of their programs since March.

It is now time to go back to the normal school and work routine, but what does that “normal” mean?

Learn the strategies needed prior to your child going back to school or to their adult services placement such as: How to get started How you can prepare your child to transition back to school How to establish routine. - amazon.com

Building community through circles of friends: a practical guide to making inclusion a reality for people with learning disabilities

By Christine Burke Outlines practical steps to developing circles of support that will result in long-lasting friendships and on-going connections in a person's local community.

Offers a resource to help understand the values that should underpin the process of personcentred planning. Contains practical guidance and examples of good practice, as well as real life case studies.

Relevant to anyone involved in supporting people with a learning disability to develop meaningful friendships and connections within their local community.

Please contact the library team (Phil, Ros, Ann and Michael) on 0800 442 442, email librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ You can watch the library video: https://www. youtube.com/watch?v=AunmBYTIZTM

CLEO’S BOOK

By Tracy Goninon-Pearse

This year, some children in Cleo's class didn't really know what Down syndrome was.

They could see that Cleo was different, but didn't know how or why.

I wanted something that could be shared with her new class at the start of next year and start a conversation about Down syndrome at an ageappropriate level.

I made it up through vistaprint, so it would be durable and can be kept on the classroom bookshelf.

I had done something similar a few years ago,

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(but it was just printed from the computer and stapled) and I found it was really well received by both the kids and their parents.

Some parents who were initially wary to approach me about Cleo as they didn't know how to start the conversation, used the book as a tool to break the ice and start a conversation with me.

By using positive language in the book and pointing out cool things she can do due to her Down syndrome, we point out it's not something bad or scary and lots of children are jealous she can do the splits!

NZDSA Notices

Sign up for 2021 Youth Development Camp Calling for expressions of interest for the 2021 Youth Development Camp The 2021 Youth Development Camp will be hosted from Friday the 19th November to Sunday the 21st November 2021 at Vaughan Park Retreat Centre, Long Bay, Auckland.

The NZDSA is calling for expressions of interest from NZDSA members over the age of 18 with Down syndrome who would like to attend this camp.

If you want to know more or you want to register your interest, please email neo@nzdsa.org.nz by the 30th April 2021.

Please note that we have limited places on offer, so register early to secure your spot.

Rose Award I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21.

The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email Rose at na@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.

Numicon Kits Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits.

Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon, the website is numicon.co.nz/ If you would like to borrow a kit please contact Rose te Kaat for more information at na@nzdsa.org.nz or on 0800 693 725.

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Thanks Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • Joyce Fisher Charitable Trust • Rata Foundation • NZ Lottery Grants Board • Holdsworth Charitable Trust • Thomas George Macarthy Trust • Pub Charity • Southern Stars • Downlights NZ • Enable NZ - Mana Whaikaha • COGS Christchurch • COGS Hamilton • COGS Manukau • COGS Manawatū/Horowhēnua • COGS Otago • COGS Whangārei • COGS North Shore • COGS Wellington • COGS Southland • Page Charitable Trust

Contact Directory

Kim Porthouse

NZDSA Committee

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

Angelique van der Velden

NZDSA Staff

Diane Burnett

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

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

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

Bridie Allen

Averill Glew

Shelley Waters

Zandra Vaccarino

Rose te Kaat

Grace Perry

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

National Administrator 0800 693 724 na@nzdsa.org.nz

Administration Assistant 0800 693 724 grace@nzdsa.org.nz

Daniel te Kaat

Jess Waters

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

Social Media and Information Officer hello@nzdsa.org.nz

Donna Higgs

Sandra Slattery

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

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

Coen Lammers Communications Advisor and CHAT21 Editor 027 730 239 editor@nzdsa.org.nz

Auckland Community Liaison Officer 0800 693 724 clo@adsa.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.

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

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

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

Regional Liaison Officers

Bev Smith

Treasurer treasurer@nzdsa.org.nz

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 hear about new resources and see what our communities are up to at nz_down_syndrome Check out the NZDSA's new website at nzdsa.org.nz

Our people

Bespoke Library Day Baby Jonty (right) Chey enjoying the summer (centre left)

Caleb Hall attending the NZ Boys Dance Convention in Christchurch recently (centre right) Courtney Duncan the powerlifter. She weighs 56kg and benchpresses 52kg and deadlifts 90kg (right)

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Me and my pet

Iris and her best fur buddy, Beanie

Stan and his best friend Lupin

Louie and Gertie

Jade and Minnie

Luke Simons

Robbie and Chase