CHAT 21 Winter 2021

CHAT 21

Journal About & For The New Zealand Down Syndrome Community

ISSUE 86, Winter 2021 ISSN 2744-4635

Please see urgent reminder on page 3.

Our People

Waitakiri Primary School raised $448 for odd sock day

Rory Stephen with the boy scouts

NZDSA committee member Bridie Allen and Libby

Howick primary school raised $323 from their mufti day

2

URGENT REMINDER: As you may be aware the NZDSA recently transitioned to a new database.

As part of this transition our existing database of paid members was moved to the new database and given extended paid membership.

At this time, that paid membership is about to expire. You should have received an email in the past month asking you to log in and update your details on the NZDSA's new website. We ask that you could please visit nzdsa.org.nz/ login to update your personal details and add a payment method if you wish to continue to be a full member of the NZDSA.

You'll need to use your email address as your username and follow the 'forgot password' process to update your password if you have not logged in before.

If you have already done so, thank you!

If you do not do this in the next 30 days your membership will be reverted to a free membership — this will mean you will no longer receive a printed copy of CHAT 21.

If you have any questions please contact Rose at na@nzdsa.org.nz.

We thank you for being a member and your continued support of the NZDSA.

From the Editor Welcome to the Winter Edition of CHAT 21.

As you can see, this edition is another bumper issue with stories from around the country.

In this edition we are focusing on the National Achievement Awards that were handed out recently by our patron, Her Excellency, the Rt Hon Dame Patsy Reddy, Governor-General, at a wonderful function at Government House.

We c o n g ra t u l a t e a l l t h e re c i p i e n t s a n d acknowledge the amazing work they all do in their own communities.

The other focus in this issue is fitness and exercise which for many of us can be a struggle.

In this edition you can read the story of Sports Scientist Teresa van der Vossen who grew up with a sister with Down syndrome and became interested how a specific fitness programme could improve her sister’s fitness and overall health.

The results of her research are extremely revealing so we hope this can inspire some of you to get to the gym.

We also report on a group of weightlifters in Christchurch, rugby players in Prebbleton and the fitness programme the Foreman brothers use to keep in shape.

Of course there is so much more for everyone to read and see, so thanks again for everyone’s contributions. Without your contribution we could not put out this wonderful resource for our community.

If you enjoy reading CHAT 21, make sure you are registered as a member on our website www.nzdsa.org.nz.

You can read CHAT 21 online for free but you need to be registered.

If you are a paid member and receive a printed copy of CHAT 21, make sure your address details are correct on the website, as we use those as our mailing list.

If your details are not in our website database, we are unable to send you a copy, so please make sure you register. IT IS FREE TO REGISTER. I hope you enjoy the read.

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.

3

National Achievement Awards

Her Excellency honours trailblazers

By Coen Lammers

Jacob Dombroski

After a COVID-enforced delay, it was wonderful for the NZDSA to be hosted at Government House again by our patron, Her Excellency, the Rt Hon Dame Patsy Reddy for the annual National Achievement Awards.

The Awards are one of the absolute highlights in the calendar for the Down syndrome community to honour the wonderful achievements of people with Down syndrome, as well as their families, volunteers and support staff.

Last year’s edition unfortunately had to be postponed due to the COVID alert levels and this year’s event was again threatened by Wellington going into Level 2, but fortunately the authorities managed to contain the latest COVID scare, so all our guests were able to travel to Government House.

Visiting this very special place is an honour not many New Zealanders will have in their lifetime, so all recipients and their families were feeling pretty special themselves.

Because the awards were postponed last year, the 2021 awards had to consider nominations from two years, so the selection panel had a difficult time picking the winners from a large group of well-deserving, high-calibre nominations.

4

The judging panel eventually handed out three achievement awards for Amelia Eades from Auckland, Jacob Dombroski from Wellington and Rochelle Waters from West Melton, just outside of Christchurch.

All three recipients are well-known in their local community and further afield, for their particular talents, their advocacy and support work for people with Down syndrome.

National Executive Officer Zandra Vaccarino said that Amelia, Jacob and Rochelle are incredibly talented and independent young people and wonderful role models.

“These three young people demonstrate every day that they are not identified by their disability, but that they are proud individuals who offer terrific skills and value to their families, their friends and their community,” said Zandra.

Aside from these three nominees, Her Excellency also bestowed the Val Sturgess Volunteer of the Year Award to Kathryn Sadgrove from Northland.

Kathryn has been the driving force behind the Northland Down syndrome community ever since her son Thomas was born in 1991.

She has played multiple roles across many projects over the last 30 years and remains heavily involved.

Zandra Vaccarino, Dame Patsy and Kathryn Sadgrove

Northland advocate receives Volunteer Award Kathryn Sadgrove does not like to stand in the spotlight, but she will have to get used to it after the Whangārei grandmother was honoured with the Val Sturgess National Volunteer Award by the New Zealand Down Syndrome Association.

“I’ve always done this role for other families to benefit and not to get recognition, so I’m now learning to get all this attention,” says Kathryn who has been a driving force behind the Northland Down syndrome community.

After son Thomas was born with Down syndrome in 1991, Kathryn and husband Greg quickly recognised there was not a lot of support or information for families and she helped to

5

connect parents for social meetings, which soon evolved into the Northland Down Syndrome Support Group.

“We provide a forum for parents to share information, be educated and supported and find a listening ear from others who know what you are going through,” says Kathryn.

Kathryn became the secretary of the support group, typing minutes on her old electric typewriter, and soon started to advocate for families around Northland.

Initially, Kathryn produced monthly newsletters, but more recently set up a Northland Facebook page.

Connecting with families in Northland with its vast distances has created its own challenges.

“Sometimes we did not have phone numbers or emails so it was often difficult to reach everyone.

But that has now improved dramatically since we have our own Facebook page, which makes it so much easier to reach people all over Northland.”

Kathryn also recognised a specific need for young people with Down syndrome who had left school to have a safe place where they could meet and enjoy activities together, so started to run the GreatM8s group who meet fortnightly and have developed strong friendships.

A s i d e f ro m h e r l o c a l a c t i v i t i e s , Kat h r y n represented Northland for over 10 years on the NZDSA national committee, and has been a member of the Northland District Health Board consumer council where she advocates for the disability community.

She continues to visit parents of new-borns with Down syndrome all over Northland to provide information packs, support and acceptance.

Each year, Kathryn helps to organise the Christmas party and annual Lots of Rocks walk to celebrate World Down Syndrome day.

“Kathryn is a wonderful recipient of the Val Sturgess National Volunteer Award,” says NZSDA National Executive Officer Zandra Vaccarino.

“Kathryn is an inspiration for all the volunteers in Northland and the rest of the country.

“It is getting more difficult to find volunteers as our lives are getting busier, but Kathryn demonstrates how much she achieves despite managing her own and family health challenges, while also juggling her paid responsibilities with IDEA Services. “ Th e N o r t h l a n d a n d N ew Ze a l a n d D ow n Syndrome Community are very grateful and proud of Kathryn,” says Zandra.

National Achievement Awards

Zandra Vaccarino, Amelia Eades and Dame Patsy

Amelia's amazing year Amelia Eades was recognised at the National Achievement Awards for her incredible accomplishments in 2019.

The year 2019 was most definitely the year of Amelia.

It kicked off in February with Amelia attending a four day “Making it on my own” (MIOMO) course with about 30 other teenagers and young adults.

The course is offered to under 25s and aims to increase independence and support the transition to adulthood and resulted in a noticeable shift in Amelia’s view of herself.

A few months later, Amelia decided to tackle head-on her long-term and debilitating needle phobia. Blood tests, vaccinations, dentists, everything that involved needles was a trial.

With a safari trip to Kenya planned for the end of the year, Amelia undertook a graduated exposure

6

therapy at Anxiety Trust that culminated in a visit to the local doctor’s clinic to get up close and personal with some needles.

Amelia made a conscious decision to take part in the therapy in order to help herself. The therapist said that her engagement with the process was the key factor that led her to the point where she was able to receive her six vaccinations for Kenya without a qualm. Her family was so proud of her — no more needle phobia for Amelia!

The five-week trip to Kenya and Australia with her family was rewarding in itself. They went glamping in safari conditions and viewed the wonderful animal life.

Fortunately Amelia loves taking photos so she will have memories she can revisit for years to come.

Quickly following on from this though was the most exciting event of the year for Amelia and a significant achievement for a person with Down syndrome.

She was chosen from a large cast of wannabe models to walk in the NZ Fashion Week for an upcoming, edgy label called “Starving Artists Fund”.

To be selected required walking out alone in front of a bank of selectors with clipboards and

NZDSA President Kim Porthouse and Amelia Eades with her National Achievement Award

cameras. Not for the faint hearted, but Amelia strutted her stuff like a pro, both in the casting and again in the fashion show at the Auckland Town Hall a few weeks later.

Subsequently she has had a couple of follow-up gigs, one being an article and photo shoot for Good magazine. Look out for their September issue.

She also appeared on TV twice and featured in an article about her agent - Grace Stratton from “All is for All” - in the Air New Zealand on-board magazine.

Talk about the lives of the rich and famous!

But the year’s achievements didn’t stop there.

Amelia progressed so well in her weekly yoga classes across the other side of the city - a train and then bus ride away on a Thursday evening – that by the second half of the year she was invited to join the advanced class.

She also completed two silent residential weekend retreats during the year, both focussed on mindfulness through movement meditation.

Amelia was invited by Recreate to represent their Moxie produce team with her friend Abigail at the NZ Disability Services conference in Wellington and the two won best market stall at the conference.

7

She helped operate the merchandise stall at Buddy Walk for the second year running and was on the Sales Team for Moxie at several markets around Auckland.

Amelia also continued to participate in Special Olympics Aquatics twice a week with the Central Auckland team.

Meanwhile there was also the ongoing activity of completing her studies and working.

Amelia graduated at the end of the year from the two-year New Zealand Certificate in Skills for Living and Working programme at Unitec, achieving Merit in every unit.

In 2020 she continued to work part-time as a waitress and is in the pipeline for a second waitressing job.

She volunteers one day a week at the Titirangi Community Art Gallery where she helps mount exhibitions and supervise visitors, and two other days with Recreate’s Moxie programme, both in the garden and in the kitchen.

It’s a busy life!

National Achievement Awards

Rochelle makes Canterbury proud Rochelle Waters from Canterbury was nominated by the Canterbury Special Olympics administrator Helen Mitchell, who describes how Special Olympics are just part of Rochelle’s terrific list of achievements.

I would like to nominate Rochelle Waters for the NZDSA National Achievement Awards.

I know Rochelle through her involvement with Special Olympics and am amazed at what Rochelle has achieved throughout her lifetime, which is why I would like her to be considered for this Award.

Ro c h e l l e st a r te d sw i m m i n g w i t h S p e c i a l Olympics in 2002 after shifting to Christchurch from Hamilton, where she had lived for five years.

She began competing very early on in ribbon days held throughout Christchurch, Regional Games which were held throughout the South Island and then on to compete in National Games which have been held in Palmerston North, Wellington, Dunedin and Christchurch.

8

Rochelle Waters with her National Achievement Award

In 2016 she became a Global Messenger for Special Olympics which has meant she has been called upon to speak about Special Olympics and what it has to offer and how she has benefitted from her involvement with Special Olympics.

She has been the Chairperson of the local Special Olympics Athletes Committee which meant she also had to attend the Upper South Island Regional Committee meetings and, after finishing her term as Chairperson, she still remains on the local Athletes’ Committee.

As well as being a member of the Special Olympics team, Rochelle belongs to Jolt Dance, which is a mixed-ability dance group and has also offered Rochelle a multitude of opportunities.

Rochelle has performed in many shows with Jolt and has been a part of their teacher trainee programme which now sees Rochelle teach her own class of students with disabilities on a Monday afternoon.

She has travelled to Gisborne and Wānaka to perform in schools in a programme which is a collaboration between Jolt Dance and the Christchurch Symphony Orchestra.

Zandra Vaccarino, Rochelle Waters and Dame Patsy

Rochelle attended Darfield High School and in her final year at school, secured work experience with the Darfield Bakery as a bakery assistant working out the back in the kitchen.

After she left school, she was able to continue doing work experience for three hours per day two days a week, as well as doing work experience at West Melton School, the primary school she attended, and also the West Melton Kindergarten.

Halfway through the year, the Darfield Bakery owner advised he would like to start paying Rochelle and then even offered her an extra day of work, which was a credit to Rochelle’s work ethic and reliability and the Bakery’s recognition of Rochelle’s work.

Unfortunately, this meant Rochelle had to give up her work experience at the school and the kindergarten, but Rochelle loves working at the Bakery and takes great pride in her work and enjoys the camaraderie she has with her work colleagues.

Helping out with flouring the tins for the bread, sweeping the floor, doing the dishes and icing the biscuits are a few of her duties.

9

Rochelle has attended self-advocacy camps with the NZDSA, which she has enjoyed immensely, and would eventually love to be a self-advocate on the STRIVE group.

She has also been on the Committee of the Canterbury Down Syndrome Association.

Rochelle has learnt to travel independently on buses and planes through her involvement with Special Olympics, Jolt and the NZDSA, and she is hoping to go flatting in the near future – maybe even with her boyfriend, Sam! Rochelle’s family has had a significant role to play in helping Rochelle achieve all she has achieved.

Her Mum and Dad, Shelley and Jeff, and her two sisters, Jessica and Gemma, have supported and encouraged Rochelle along the way.

I know they are very proud of the confident, wellgrounded young woman Rochelle has become.

National Achievement Awards

Zandra Vaccarino, Jacob Dombroski and Dame Patsy

Jacob; A man of many talents Jacob Dombroski is an incredibly talented young man. James Webber from the Wellington Down Syndrome Association wrote the following nomination to describe Jacob’s achievements.

Jacob is well known in the Wellington region and nationally. He has a passion for people with extra needs and is keen to advocate for people at a Government level.

Jacob is an actor, dancer, musician and basketball player amongst other talents.

I first met Jacob in 2016 when he was performing in a show that he had written, choreographed and performed, BigJStylez.

My eldest son, sister and I watched Jacob perform.

It gave us such hope and joy and made the future of my youngest son seem much brighter amongst

10

all the medical issues and fears for the future.

Jacob went on to win many awards for his show and this led to other acting, dancing and performance opportunities.

His acting career became viral when he did a short stint acting on Shortland Street as Winston Kimiora. I’m sure this helped to advocate for people who were born with Down syndrome.

His acting must have been fabulous as he was asked to act again as a barman on Shortland street. There have been many reviews about Jacob and his performance and one described him as “totally a performer who is going to connect to any audience”.

I believe this sums up Jacob well. He definitely connected with the audience when he was asked to speak at the Frances Clarke awards in Wellington in 2019.

During lockdown with COVID-19, Jacob contacted the WDSA chairperson, asking how he could help people with extra needs during this time.

He also created a workout video that he shared with others during COVID. I don’t know all of Jacob’s story and journey, however I am keen to learn more about this amazing young man who inspired me and my whānau when I had a little baby who was starting his journey.

The WDSA is blown away by Jacob’s talent, his empathy for others and his keenness to advocate for many different people.

Michael Holdsworth playing piano at Government House

The NZDSA congratulates Michael Holdsworth on his Queen’s Birthday Honour The New Zealand Down Syndrome Association is extremely proud of Michael Holdsworth becoming a member of the New Zealand Order of Merit in this year's Queen’s Birthday Honours.

The NZDSA believes Michael is the first person with Down syndrome in New Zealand to receive this kind of honour.

Michael was recognised for his decades of work for Special Olympics and his advocacy work for full inclusion of people with Down syndrome in their community in New Zealand.

NZDSA President Kim Porthouse says that Michael has been a trailblazer for people with Down syndrome, both during his education in mainstream schools and his employment with IHC. “Michael has been a great role model and has helped to remove a lot of barriers for people with Down syndrome,” says Ms Porthouse.

“Aside from that, he is also an accomplished musician and his piano performances have been a regular feature during the NZDSA National Achievement Awards at Government House,” says Ms Porthouse, adding that Michael himself was a recipient of the National Achievement Award in 2012.

“Every person with Down syndrome and their

11

families in New Zealand will be extremely proud of Michael’s achievements and it is wonderful to see this recognised in the Queen’s Birthday Honours.”

Michael represented New Zealand at the World Down Syndrome Conference in Dublin, Ireland, in 2009 to share his story of advocacy and inclusion.

He has been involved with Special Olympics for 32 years, as an athlete, advocate and as a Global Ambassador, and has been working for IHC in the library for almost 27 years, being the helpful voice at the end of the line for people looking for resources.

The Special Olympics swimmer and skier says he is very honoured.

“With all the years of Special Olympics it has been the best thing of my sport,” he says.

The NZDSA President says that Michael is yet another example of the amazing things people with Down syndrome can achieve.

“More and more people and organisations are starting to realise what people with Down syndrome are capable of and what a great asset they are to their community.

“Michael has been one of the trailblazers and we are excited to see so many other young people following his footsteps.”

Regional Focus

Auckland Down Syndrome Association going strong after 40 years In 1981, a group of parents of children with Down syndrome started the Auckland Down Syndrome Association (ADSA). Forty years on, the ADSA is still run by parents and supported by caregivers and whānau.

The ADSA employs three part-time staff who provide support to members and their families.

They are Paula Beguely (Community Liaison Officer), Deanne Douglas (Communications Coordinator) and Rosie Maskell (Administration Support).

A key aim of the staff is to share information and advice, and coordinate opportunities for members to meet other families.

Our support starts early - from hospital or home visits for families with new-born babies, through to the school years and subsequently adulthood.

We keep in touch through regular digital

12

newsletters, our social media channels, and our printed quarterly newsletter ‘Outlook’.

We provide free access to our resource library and special-priced educational opportunities for parents and caregivers.

The management committee comprises of volunteers who are elected each year at the AGM. The committee includes a Chairperson, Secretary, Treasurer, and up to ten other members.

Monthly meetings are held online and occasionally face-to-face.

Angela Owen (mum to 12-year-old Issy) has been on the committee for seven years and is the current Chair.

Other members have also served on the committee for several years, and new people join each year. Some of our committee members have returned after taking a short break.

Kirsten McDonald (mum to seven-year-old Josh) said she re-joined the committee last year to “meet other families, be involved in our wonderful community, and to help out where I can”.

Buddy Walk has been the ADSA’s main fundraising event since 2005.

Originally developed in 1995 by the National Down Syndrome Society (NDSS), the walk was a way of bringing people together to celebrate Down Syndrome Awareness Month in October and to promote the inclusion of people with Down syndrome.

We hold our event in March, as the weather is generally better, and we can tie the event into World Down Syndrome Day (WDSD) on 21 March.

Sadly, we haven’t been able to hold a Buddy Walk for two years running, due to COVID-19 restrictions. But we still managed to celebrate

13

WDSD through an online event, and several small community fundraising initiatives. We also still held our ever-popular raffle draw!

Another important service we provide is our biannual course Success in School: helping children who learn differently.

This course is designed for SENCOs, teachers, teacher aides, specialist staff, occupational therapists, and parent educators. We receive a lot of positive feedback at the end of each course.

We started noticing that many of the teachers and teacher aides who came on the course didn’t necessarily teach children who have Down syndrome. As they often taught children with other needs, in 2020 we changed the name of the course to reflect this (previously called ‘Down Syndrome: Success in School’).

Regional Focus

In collaboration with Recreate NZ, we provide two social clubs for our members to join: a club for those aged 18+, and a youth club.

Every month members meet up at different locations to mix and mingle and try out different activities. This might be baking, playing board games, visiting MOTAT or Laser Tag, or enjoying a BBQ, bowling, or fish 'n' chips together.

For our younger members, we provide regular get-togethers for different age groups. These are for either pre-schoolers or primary school-aged kids.

There are also coffee groups for members with new babies, including both Chinese and Japanese speaking groups and one for our Pasifika families.

We also like to get together for BBQs in Cornwall Park when the weather is warmer.

We readily share any third-party events that come our way. These include annual events like the Farmers Santa Parade, FunFest VIP Day, or

14

the Special Children’s Christmas Party. We often have free tickets to magic or circus shows and meet-and-greet opportunities with sports stars such as the Vodafone Warriors!

We are halfway through this year, but still have plenty of events planned.

We are currently taking bookings for our next Success in School course in August.

Recreate NZ are organising a fabulous ball, also in August. In September we will hold our AGM and October is World Down Syndrome Month where we aim to hold another online auction or other giveaways. In amongst all of this there will be several age-group specific catchups.

Finally, we always finish off the year with our very own ADSA Annual Children’s Christmas Party at venues such as Kiwi Valley Farm, Butterfly Creek, or the Auckland Adventure Park in Silverdale – the venue for this year’s party.

15

New research delivers encouraging fitness results for people with Down syndrome

By Coen Lammers

Many parents with children with Down syndrome share the challenge of keeping their child active and healthy.

We all know the benefits of regular exercise for our cardiovascular systems, our strength and maintaining a healthy weight.

New research by sports scientist Teresa van der Vossen, however, has shown that, for people with Down syndrome, the benefits of well-planned and focused exercise are much more significant and can have a long-term impact on the quality of life and potentially their life span.

Teresa is a lecturer in Health and Wellness, specialising in Strength and Conditioning at UCOL in Palmerston North, and has a deep interest in how the body functions and responds to training the muscles, as well as the mind.

Growing up with sister Nicole, who has Down syndrome, Teresa was fascinated by the physical abilities of people with Down syndrome and how she could support her sister to develop a specialised exercise programme.

16

“I decided to focus on people with Down syndrome during my Strength and Conditioning studies, but when I started I was shocked that there was very little to no research in this subject at all,” says Teresa.

“We spend millions of dollars and years of research to help a high-performance athlete win a gold medal at the Olympics, but nobody seemed to have spent any money or time looking at people with Down syndrome.

“As far as health and exercise are concerned researchers and authorities seem to have ignored an entire section of our population.”

Teresa planned her research programme with sister Nicole in mind. She developed a four-week strength and conditioning training programme at the gym where she worked as a personal trainer, just like she would for any other gym client.

“I did not see any reason to do it any differently because people with Down syndrome have the same muscles and body structure as everyone else and their strengths and weaknesses are different for each individual, just like the rest of the population.”

Teresa van der Vossen training with her sister Nicole

Teresa explains how her training focused on developing strength, improving reaction time and combining those two elements to see how fast the athlete can fire up the muscles to create that strength.

The final part of the training was aimed at improving balance and conditioning.

17

When Nicole started her training she instantly impressed everyone in the gym with her ability to do perfect squats.

“That was amazing. She totally surprised me by using the textbook technique to do perfect squats that some others would take months to get right.”

Teresa with her sisters after graduating

On the flipside, there were other unexpected challenges, like learning how to do deadlifts.

Teaching her sister the movements that were challenging for her, forced the researcher to go back to the drawing board and develop specific techniques to create links between the brain and the muscles to create the required movements.

“That was a big challenge,” admits Teresa.

“There are different theories and tools to teach new skills. Some people need to observe, while others need to be exposed to a movement and learn through repetition. For some groups, the movement needs to be broken down into smaller parts and developed step-by-step,” says Teresa.

The researcher looked around the world for other studies that might have given her insights into the cognitive learning of people with Down syndrome, but found a major gap in available literature.

“And there was even less information about developing strength for people with Down syndrome. Every study I could find had been in a really controlled environment like a treadmill and didn’t really give me any clues for my research,” says Teresa, who was shocked to find “an abyss of knowledge”.

18

After failing to find much helpful information from other research, the two sisters hit the gym.

The team initially created a baseline for Nicole by testing her strength, reaction time and other basic movements.

“These basic movements are essential for everyday life and your wellness and require physiological, but also neurological skills. It is not just about what the body can do, but also what the brain can cope with.”

After four weeks of training, Nicole’s strength, fitness and reaction times were tested again and Teresa says her sister’s reaction times had improved significantly.

“Improving reaction times is great for sport, but has much wider implications in other aspects of life,” says Teresa. “For example if you have a pot with oil boiling over or another situation where you have to act quickly. The ability to react fast can make a huge difference.”

Nicole’s strength had also improved, as well as her ability to produce the power quickly.

Another area that showed higher scores in the testing was coordination, balance and finer motor skills.

“Those numbers improved dramatically, which I thought was quite exciting because people with Down syndrome are more prone to tripping over because of their poor eyesight.”

Teresa thinks that better balance, coordination and reaction times would have major health and safety benefits, as a better equipped person may suddenly have the skills to steady themselves or break their fall.

She says that learning certain skills at an early age may be the difference between tripping over or not when a person is 50.

“The improvements in strength, coordination, reaction times and balance can relate to every parameter and every aspect of life and could improve the quality of life significantly.”

Teresa says the benefits are obvious and she will try and promote her findings with health authorities and other organisations who may be able to implement such fitness programmes for people with Down syndrome across the country.

“The proof is in the pudding, so why can’t we do this?”

The Prebbleton Rugby Football Club TRI rugby team

Full throttle TRI rugby in Prebbleton

By Nathan Brown

Prebbleton RFC is all about providing an enjoyable rugby experience. We have an amazing commitee, coaches, supporters and sponsors who work very hard to create this experience.

We were sent the idea about tri rugby and attended a TRI training at the High School Old Boys Club at Hagley Park to see what it was all about. We immediately realised what an awesome initiative this was and completely fits in with our club ethos.

Founded in 2010 Trust Rugby International (TRI) is a proactive, Scottish-based charity, whose goal is to bring individuals and communities together through the game of rugby.

Unlike other organisations, who use a non-contact version of the sport to involve people with

19

learning disabilities, they believe all players can be enabled to participate to their full potential.

Through hard work, they have established several fully unified, “full contact” rugby teams.

Athletes play alongside enablers on the field. We have developed a coloured headgear system to indicate athlete's abilities.

Players wearing red headgear are touch only, yellow headgear is simulated tackle (held and brought gently to ground) and black headgear (normal rugby contact rules apply).

Our TRI crew at Prebbleton RFC currently has two players with Down syndrome.

Kahu Guthrie is a Prebbleton Rugby Club Legend, and is the club’s number 1 Tee Boy with the Colts team.

It's no coincidence that Colts has the club highest point's scorer in the club. Kahu must be the lucky charm.

Harry Stewart is a little pocket rocket.

After having to watch his brother play rugby he gets his fix with us on a Sunday Afternoon. Harry won’t take part unless he gets to tackle everyone.

It's an amazing privilege to the club to be able to provide these athletes an avenue to play New Zealand’s national game.

If anyone in the Selwyn area is interested to come along, please contact Development Officer Nathan Brown 027 3389028 or rdo@prfc.co.nz

Reilly with her medals

Powerlifting, the sport for everybody

By Laura Carter

Reilly ‘Superstar” Hope recently competed in two powerlifting competitions.

She did amazingly well at the World Powerlifting Canterbury Champs where she placed first in her class, which was both in her Special Olympics class as well as her mainstream class.

She repeated the feat at the World Powerlifting UNTITE competition where she again placed first in her class.

20

Laura and Reilly

M y n a m e i s L a u ra C a r te r a n d I a m f ro m Christchurch. My passion is powerlifting and I have been doing it for six years.

I have coached Reilly leading up to her two competitions and she is so dedicated to her training and performs so well every time.

Her family and friends are a huge support for her.

We are all so proud of her achievements.

I love how everybody is capable of participating in strength sports and how empowered you feel being strong.

The atmosphere at competitions is electric with everyone cheering you on and wanting you to succeed.

Powerlifting competitions consist of three attempts at three different lifts – Squat, Bench Press and Deadlift.

Reilly’s personal best lifts are: Squat – 45kg Bench Press – 50kg Deadlift - 80kg You try if you can beat that.

President's Pen

Time to vaccinate Well, here we are halfway through 2021 already!

This time last year the world had been plunged into the chaos of the COVID-19 pandemic.

I think few of us realised then that a year later most of the world would still be ravaged by the virus with wave after wave of mutation and infections.

We here in New Zealand are so fortunate to have the exceptional control that has been achieved and to still be living our day-to-day life relatively normally and shielded from the brutal reality of the death rates.

I fear that because we are not being personally affected, as a population, we don't have true understanding of the devastation this virus brings.

Thousands and thousands of people are still dying around the world every day because of this quickly mutating virus.

Here in New Zealand, I see and hear so much complacency, so few people scan QR codes as they enter shops, businesses and public spaces.

Masks are mandatory on public transport and whilst people wear them on planes, on buses or trains there will often be someone without a mask.

Many don’t present for COVID-19 testing if they develop symptoms, putting it down to ‘flu or a cold’.

We should at least be ringing the health line to see if testing is recommended.

I hear people saying they are not going to get vaccinated or they are reluctant to get their loved one's vaccinated, there seems to be a fear around the safety of the vaccines and side effects.

Side effects can occur with every medicine or vaccine, most of the time these side effects are mild.

In New Zealand we have the Pfizer vaccine for COVID-19. There is no live virus in this vaccine and the vaccine has gone through all the normal clinical trials, safety checks and regulatory requirements before being approved for use.

21

Trials have shown it is 95% effective against COVID-19 and real-world use of the vaccine is bearing out it’s effectiveness and safety.

The vaccine helps prevent you from getting infected and having COVID-19 symptoms or severe illness, meaning you have no symptoms or if you do catch COVID-19 you’re far less likely to fall seriously ill and you will have much fewer milder symptoms with a faster recovery.

As with any vaccine, the Pfizer vaccine may not fully protect everyone who gets it. However, it is highly effective if people have BOTH doses.

I encourage you to go to the Ministry of Health website and read up about the vaccine, it’s safety and how it works.

Our community is a vulnerable one and so I want to use this opportunity to make a plug to you all to get your family vaccinated.

It is now time for category tier 3 of the vaccine roll out.

Our family members with Down syndrome fall into tier 3 because of their immune compromised position and some because of underlying conditions such as heart defects.

Being immune compromised means an individual is more likely to succumb to infection and also more likely to have severe disease.

This means it is imperative that we vaccinate our family member and ourselves to help protect them.

We should encourage support workers to get vaccinated also.

Our borders are slowly being opened up to other parts of the world and whilst our government is doing this cautiously, it does open more opportunities for the virus to circulate in our community.

Vaccination is the most effective and powerful thing that you can do to help protect yourself and your family member from this devastating disease.

Take care everyone, keep warm and safe this winter, keep scanning the QR codes, wear masks, get advice re testing if you have symptoms, stay home if you are sick, and I hope you’ll be informed and proactive about vaccination.

Kim

Down Write Brilliant

The healthy living guide

By Daniel and Joel Forman Daniel loves being in the kitchen

We are brothers that own a house together. Joel is 33 and Daniel is 37. We have lived in this house for 2 years.

We have a huge family but we live by ourselves.

We like to be fit and do exercise and eat healthy food.

Daniel says: "I like exercise because it gets you fit and to get strong at home. The exercise that we like to do is active.”

“My favourite exercise is boxing because it gives me strong muscles for different moves and they are jab, hook, upper cut and straight punch.

“I like to do burpees, it is hard to do and I like it.

We do exercise at home and outside. My advice is to do lots of it every day."

Joel says: "My favourite exercise is boxing and dancing. If you have the right gear for boxing you can do it at home or if you don't do it at home you can do it at gym.”

“You can do Zumba on YouTube and around Christchurch. It's good fun and it is hard work."

We have menus on the fridge that we cook every night that has been set down by a nutritionist.

For example chicken casserole, we have a look at the list and do it in order. We cook every night with healthy foods like stir-fry, fish, pasta, burgers, pizza, burritos and curries.

22

We make hamburgers with lettuce and tomatoes and cheese with beetroot and eggs.

Sometimes we cook meals on the BBQ in summer.

Besides that, Daniel's best advice is to be healthy and eat very healthy things, think about your body’s health and to have no junk food in your house.

Joel says "we do have junk food in the house"!

Joel's easy tips for eating are: •

•

• • •

Every morning always have breakfast — you can have fruit with WeetBix and yoghurt as well.

Berocca is a drink that gives you energy and power to start your day in the morning.

Have the right food for lunch, sandwiches and wraps are good.

Eat the right foods like salad and fish and may​be steak. Steak has lots of iron.

The most important thing is keep on drinking lots of water. Eight glasses every day. And eat fruit.

Daniel and Joel Foreman showing how they keep so fit

23

Down Write Brilliant

Andrew Oswin on holiday in Akaroa

Akaroa — holiday in my own backyard

By Andrew Oswin

24

I went on a lovely holiday with my parents to Akaroa (which means Long Bay).

We stayed at the Rose Cottage where we stayed there for five nights and one day.

We left Christchurch on Monday 26th April and returned home on Saturday 1st May 2021.

The weather was very splendid and we had some lovely warm days.

My father and I went on many walks around Akaroa.

We walked up to The Head Lighthouse and the Britomart Monument overlooking the scenery of the harbour.

This photo is of me at Woodills South which is part of the Akaroa Backdrop which I walked with my father.

This is a very beautiful waterfall at Newtons Falls.

My father and I walked there to have a look.

Mum, Dad and I went out to the Mandala Restaurant which is an Indian-Asian restaurant where we went out to dinner.

We shared a lovely entrée of Pani Puri and I had Prawn Noodles for my main dinner.

I have had a lovely holiday with my parents, and I hope that many readers and the Down syndrome community will enjoy reading my story in the CHAT 21 section of Down Write Brilliant.

Happy reading!

Luka Willems shows off his sign language skills to his new friend Poppy

Poppy

By Angelique van der Velden

Sometimes there’s someone who can light up the room with their smile.

So let me introduce Poppy. She is truly that star.

Poppy lives in Nelson with her family. She has a sister called Emmie who is 6 and a brother called Jake who is 10 years old.

I met her and her mum Donna while visiting the weekly playgroup hosted by Nelson’s Child Development services (what an amazing team), on behalf of the NZDSA. Poppy was 17 months old at the time.

She has so many talents and skills and is busy discovering and learning through play.

25

Go Poppy!

“She’s a very cruisy, social and happy-go-lucky little girl that smiles at everyone and makes them smile too,” says Donna.

“Taking her anywhere she gets people’s attention.

Poppy loves anything musical and enjoys swings and anything that means she’s bouncing”.

A special moment occurred when Luka Willems shared a song with the play group which was accompanied by sign language.

The group was inspired. Thank you for sharing your skills Luka.

Down Write Brilliant

Viva! social club camp

By Tessa Haanen

Twelve of us from the Viva Social Club set off on Saturday 17 April for the annual camp. This year’s camp was at Kaitoke.

We had music in the van and a few of us (including me!) sang along. We slept in bunk rooms – one for the boys and one for the girls.

We had a tour of the camp and did lots of fun activities including kayaking and the flying fox.

The staff encouraged us to work together to get up the steep hill to the flying fox. It was a bit scary but we all did it.

We had lasagne (Garfield’s favourite) for dinner and ice cream for dessert. We always have lasagne at camp because everyone loves it.

Jevan burped when he had finished!

After dinner we had a talent show. Emily did a dance to Mama Mia and I danced to “All shook up” by Elvis. Some of the boys did a haka.

Four staff came with us, Holly, Flossie, Max and Hannah. They were friendly and kind. Max even gave Dan a piggy back.

We all had fun at camp. I’m looking forward to going again next year.

26

Thanks Heaps Thank you to the ANZ Staff Foundation for supporting camp this year

Some comments from the other particpants: Jeff: This workshop was indescribable. I learnt more about presentation skills and disability rights. We worked really hard but we had fun as well.

Vincenzo: I feel empowered after attending the workshop. I enjoyed listening to Brian Coffey talk about ODI and how he works with the government.

Peter Lewis Rees

Learning new skills STRIVE funshop

By Peter Lewis Rees

My name is Peter Lewis Rees I went to The NZDSA Funshop where I learnt all about Self Advocacy and I also went for an interview to be a new member on the STRIVE group.

I learnt all about presentation Skills, PowerPoint skills and Experiences with work. We also had some special guests like Brian Coffey, Sarah Fuhrer and Paula Tesoriero. They talked about some very interesting things that they are researching and are working on and towards as well.

I enjoyed myself on this trip to Wellington because of the company and many activities. I answered all of the interview questions very well and I watched the amounts of food that I had.

I also learnt about Articles 27,30 and 25, we also did some Declarations. By the way we stayed in the Rydges Hotel located in the Wellington Terminal.

Thank You, Peter

27

Abigail: I enjoyed all the activities and discussions. I love to work well in groups and to share ideas. I also enjoyed learning about presentations and presentations skills and learning more about Article 30.

Edward: I enjoyed doing more work on research. I liked learning about Project Mobile.

Duncan: I enjoy learning new things and travelling I enjoyed participating and working as a team, sharing and learning.

Caroline: It is always good to see our friends.

I liked supporting the self-advocates and interviewing them. I also enjoyed introducing Sarah Fuhrer, Advisor Disability, from Office of the Health and Disability Commissioner.

Alex: I enjoyed being on the panel to interview the self-advocates.

Erin: I enjoyed everything especially doing meet and greets and facilitating the session on employment.

Emily: I enjoyed learning more about presentations.

Mohit: I enjoyed meeting all the guest speakers.

Carlos: It is always good to learn somethings new and to contribute with my input.

Georgia: I learnt more about my rights and I enjoyed watching the Healthy and Disability Commission videos.

Me and My Job

Emma Ferens: Waitress at Bird on a Wire Where do you work? I work at a restaurant and it's called bird on a wire and it is in Ponsonby, Auckland.

What is your role? I am a waitress and I love it. I interact with customers by smiling and laughing and talking to them. All the customers are very chatty and lovely people.

How long have you worked here? I’ve worked here for two-and-a-half years.

What's the best thing about your job? Making drinks, doing the dishes and serving customers on the till. I like that my job helps me to be a more positive person.

And what's the worst part of your job? Pulling the chicken.

What other jobs would you like? I would like to be an actress and focus on my acting career.

What new skills have you learnt at this job?

I've learnt how to count money at the till, how to make chocolate thick shakes (I love making chocolate drinks) and I learnt how to make a bird

28

bowl which is where you put rice on the side with lots of veggies and add 80g or 120g of chicken and to make sure its measured right.

Did you get lots of support learning these new skills? Yes, a lot of support. I had a job coach before I started my job.

Is there anything you would change about your job? I would like to make coffees and work more so I could earn more money.

Is there anything you find challenging? Going up on the stool to get things and put dishes away when I'm washing them.

How do you feel about having a job? I love my job because I get to be part of the community and like to connect with people. I also feel so relieved that I did find a job and I really enjoy earning my own money.

I want to say thank you to Lester Elliot for giving me this job at "Bird", a shorter nickname for Bird on a wire. My job is so awesome and I love it!

The Hawkes Bay Special Olympics football team

Time-defying Special Olympics team qualifies for National Games A time-defying team of Special Olympics footballers from the Hawkes Bay recently qualified for an incredible eighth National Summer Games.

The Hawkes Bay football team - with players ranging from 71-year old Danny Dromgool to 9-year-old Dominic Hoskins - have been a regular feature at the National Games for longer than most can remember.

The National Summer Games is the four-yearly pinnacle event for Special Olympics New Zealand with nearly 2000 athletes and coaches from all corners of the country expected to compete across 11 sports at eight venues in Hamilton, from December 8-12.

29

Coach Jack Lowe has lost count how many National Games the squad has attended ever since Shayne Crabtree and himself put their hands up to help out a few youngsters with intellectual disabilities who wanted to play football, now close to 30 years ago.

“I am not sure if we are the longest running team in the country, but we are definitely the happiest,” says Jack who had no other involvement in football and never planned to dedicate half his life to Special Olympics.

“But once you put your hand up for Special Olympics, you seem to be part of it until you die.

The athletes rely so much on you and become such a big part of your life,” says Jack, who has enjoyed every minute of it.

Jack rattles off endless heart-warming tales about his team competing around New Zealand and Australia, including one Trans-Tasman event in which his team struggled to score.

“We were losing badly each game, but nobody cared. One game we finally got close to scoring, but our striker’s bootlaces came loose.

“Instead of stopping the ball, the Victorian goalkeeper bend down to do up our player’s laces. But even with the goalkeeper busy with the laces, we still couldn’t score. That was a classic Special Olympics moment.”

The coaches are clearly hooked on the joy their players get from the game and the unique moments Special Olympics events provide.

And they are not afraid to push the boundaries, trying to find a place for any player, whatever their disability.

“A few years ago, one new player insisted he wanted to be in goal, but when he walked onto the field, we realised he was blind. Every time the ball hit him he’d would ask if he had saved it.

30

“Unfortunately he started to get a bit angry every time the ball hit him too hard, so we had to try someone else,” says Jack, who has a daughter swimming in Special Olympics, but because of his footballing commitments he has not seen her compete for eight years.

Jack says his charges can’t wait to get to Hamilton and reconnect with the close friends they have made competing around the country.

“When the teams get together it is hugs and high-fives all around when they see old friends, old girlfriends or former boyfriends.

“The National Games are very social and some athletes are convinced they hook up with three or four new girlfriends in that one week,” laughs Jack, who along with Shayne is slowly thinking about retiring from coaching and has started to bring in some younger coaching talent.

“My favourite moment? When they get off the bus after a three-hour bus ride and they are all very tired, but still all make sure they thank you for coaching them.”

31

NEO Notes

Fundraising: a timeconsuming task to keep the wheels turning

By Zandra Vaccarino

In the last edition of CHAT 21 I indicated that I am often asked “What does the NZDSA do”? I also mentioned that in each edition of CHAT 21 I will respond to the question by focusing on a different aspect of work that the NZDSA does. If you missed the last edition of CHAT 21, you can still read it on our website.

While some work the NZDSA does is very visible there are many pieces of critical work that can be invisible. In the last edition I talked about one example, the systemic advocacy work the NZDSA does which 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.

Securing funding is another largely invisible but crucial role of the NZDSA. S e c u r i n g f u n d i n g i s t re m e n d o u s l y t i m e consuming, but essential to ensure that we remain a sustainable organisation that can continue to deliver our core information, support, and systemic advocacy work as well as all the additional projects we undertake.

The NZDSA receives no government funding through government contracts so we have to secure funds for all the operational and project costs which also includes funds for things like producing CHAT 21, developing and distributing resources to our regional members and regional groups, and our 0800 number.

32

Securing funding can be a daunting and demanding task as it requires us to explore different ways to secure funding which includes • • • • • • •

applying for grant funding hosting fundraising events creating workplace giving programmes seeking sponsorship establishing regular donations exploring new funding avenues, and hosting our national annual appeal.

All these methods enable the NZDSA to secure funding that allows us to achieve our strategic goals. Unfortunately, the lack of funding can also prevent the NZDSA from progressing projects.

So we appreciate that Southern Stars, a charitable trust, assists the NZDSA by running our annual telephone fundraising campaign. This year the campaign kicked off on the 3rd May and ran through to the 18th June.

T h i s c a m p a i g n w i l l s u p p o r t t h e Yo u t h Development camp and all the related costs of publishing CHAT 21.

The donations that the NZDSA has received over a number of annual appeals, has enabled us to host camps and workshops for people with Down syndrome as well as enabling the NZDSA to produce resources like our New Parent Pack, Plan for the Future, Turn the Page, Transition from School, Creating a Positive Hospital Experience, Play and Daily Routine, Dear Community, Dear Health Professionals, We Decide, Little One booklet, and the Couch Conversations series.

The NZDSA committee and staff at their recent strategic planning weekend

In the future, if you receive a call from a Southern Stars team member, take a moment to thank them for supporting our community and if you made a donation, thank you! If you would like to support the NZDSA via a donation, it is quick and easy to do via our website.

The NZDSA is always looking for new opportunities for fundraising so if you would like to help with a fundraising event or know of a potential corporate sponsor, please contact me at neo@nzdsa.org.nz

The NZDSA Strategic Plan 2022–2027 At the end of May, the National Committee, the National team, a regional representative and a STRIVE representative, met in Christchurch to focus on the development of the NZDSA’s 20222027 Strategic Plan.

The session was facilitated by Simon Cayley from the Bishop’s Action Foundation and we spent considerable time reviewing the feedback from the recent NZDSA survey. Your feedback was valued and helped shape the NZDSA’s thinking and vision for the NZDSA’s Strategic Plan.

In the next edition of CHAT 21, I will share more information about the Strategic Plan.

33

COVID Vaccine The NZDSA has actively engaged with the Ministry of Health and advocated for information on the COVID-19 Vaccine. We have stressed how important it is for the information to be accessible to people with Down syndrome.

Th e N Z DSA wa s a b l e to h o st a we b i n a r information session for parents and whānau that was targeted specially to our community, but we also invited other organisations who support people with learning disabilities or high and complex needs to join the session.

The team at national office has curated COVID-19 vaccine information that we think is relevant for our community and it is on our website in the section titled “COVID-19”.

I think the Easy Read documents are very useful as well as the support decision-making tool. We have also sent out a COVID-19 Vaccine notice via email. If you haven’t received this notice, then please go to our member section of the website and update your details.

Guests attending “The Golden Years: Ageing & Down syndrome” & “Down syndrome & Autism Spectrum Disorder (ASD)” workshops

National Volunteer Week — 20 June to 26 June The National Volunteer Week is an opportunity to honour the collective energies and mana of all our volunteers who enrich the Down syndrome community in Aotearoa New Zealand. This year’s theme was ‘Recognise, Connect, Reimagine’.

I think it is important to recognise that the NZDSA was established by volunteer parents and it has continued to evolve and develop because of parents and whānau who have volunteered their time, skills and energy to connect with the wider Down syndrome community and to help them reimagine what hopes and dreams they hold for the future.

I think that reimagining a future where all people with Down syndrome can enjoy full inclusion in their community, have full citizenship rights and can achieve their goals, is what has driven the NZDSA volunteers to constantly advocate at a political level for positive change.

It would be impossible for the regional Down syndrome groups and the NZDSA to provide the varied information and support services without our wonderful volunteers who serve the NZDSA community.

Thank you to all our volunteers for your ongoing willingness to work together to bring change for people with Down syndrome.

At the wonderful National Achievement Award's celebration at Government House we presented Kathryn Sadgrove with the Val Sturgress National Volunteer Award for many years of dedicated volunteer service to her local Northland community and the wider NZDSA community.

We can’t acknowledge all our volunteers in person, but we do want to thank all our volunteers - parents, siblings, whānau, young people with

34

Down syndrome and supporters! You are valued and your open minds, open hearts and your ability to create joy contributes to shaping the world we want to live in, now and into the future!

NZDSA — Developing New Resources The NZDSA has worked with former committee member Geraldine Whatnell who is also the Nurse Practitioner Mental Health and Addictions Service, Palmerston North Hospital to produce two valuable resources.

On the 10th and 11th June 2021, Geraldine presented a workshop series in Palmerston North.

The workshop series consisted of two sessions: “The Golden Years: Ageing and Down syndrome” and “Down syndrome and Autism Spectrum Disorder (ASD)”.

“The Golden Years: Ageing and Down syndrome” was an introduction to the needs of the older person with Down syndrome and how this may affect their health and wellbeing alongside the supports they may need.

The “Down syndrome and Autism Spectrum Disorder (ASD)” session was an introduction to the diagnosis of dual disability - Down syndrome and Autism Spectrum Disorder.

We also filmed these workshops so that in the future we can offer these workshops online. We will let you know via Enews when these resources will be available on the NZDSA website.

40th Anniversary of the NZDSA This year the NZDSA celebrates its 40th anniversary. To mark this milestone, and to archive the development of the NZDSA, we would like to feature an article in CHAT 21 which reflects significant milestones in the development of the NZDSA.

TE WIKI TŪAO Ā-MOTU national volunteer week

20–26 JUNE 2021 #NVW2021

RECOGNISE CONNECT REIMAGINE ARATAKI | HĀPAI | WHAKAMANA Lead. Advocate. Recognise.

We invite all our members to share their stories and memories of ordinary and extraordinary achievements that have shaped the development of the NZDSA. Please would you email all your submissions to Coen editor@nzdsa.org.nz . We would appreciate you including high resolution photographs!

Rose Awards I haven’t received a nomination for a Rose Award for a number of editions. So I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21.

35

The Rose Awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email nzdsi@ extra.co.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”.

We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Hei konei rā Zandra

Champion Centre

Stepping into a sensory world Learning to understand our bodies and respond to the world around us is a slow process, writes Clinical Director Lauren Porter from the Champion Centre in Christchurch.

Every human has a sensory system and a sensory profile. Our sensory systems govern how we understand and respond to sights, sounds, touch, movement, taste, smell, body position, movement and emotional cues.

Usually we are unaware of all this input and response. We go about our days and make accommodations as needed.

36

We stand up and stretch when stiff; we take a slow deep breath when overwhelmed; we step out of a loud room when too noisy; we ask for the shades to be lowered when the sun is piercing our eyes.

Learning to understand the world and our sensory processes within it is a process of steps.

As children, we must first become aware of our bodies, our sensations, and the coordination of ourselves in space and with others.

We must become aware of our family and caregivers and find a way to communicate and connect. And with each of these steps we must find a way to stay regulated – emotionally steady and at ease – so that we can take in, process and feed back the information that is present.

Often the information is sensory and it is often not under our control.

Nia Jones and Mum Kailee Smith

For many children, interpreting the sensory world can be fraught with challenge. Without sufficient language to verbalise experience and without sufficient understanding of what may be happening around them, children can be prone to overwhelm, upset and distress.

Music and movement can provide a way to achieve the regulation necessary to open up to the world, to understand sensations and to translate them into meaningful experience.

A recent group music session at the Champion Centre with music was an illustration of music and movement in service of sensory integration and regulation.

During that session, we – the children, the parents and the therapists – did a lot of standing, stomping and moving. Especially stomping.

We used our feet, we made noise, we created rhythm and beat. Some of us sang whilst we stomped, others were quiet, even with eyes closed. The music session was enjoyed by everyone.

For particular children, stomping with movement is an important pathway to finding the way from overwhelm to calm.

With stomping comes vibration, effortful control, expression, patterning, sound, rhythm, predictability, body coordination, and a wholesystem integration. With stomping comes relief

37

and the freedom to now focus on other things, other people, and other ways of engaging and interacting.

This does not mean that stomping will always be necessary. Instead, it is a bridge and a learning whilst body and brain find ways to create pathways of growth. It is also good fun, a form of play, and something that peers can join in with.

Stomping and moving together to music was about many different things. It was an experience of connection and relationship where we all joined together and got to know each other better.

It was a scaffolding of neurodevelopment, physical integration, and emotional awareness.

It was the coordination of expertise from the music specialist, the play specialist, the early intervention teacher, the speech therapist and the parents to find a small piece of childled intervention and support. And it was an expression of what the children have told us about who they are, what they need and what the next steps for ongoing development look like.

Sometimes what happens in a session looks like simple child’s play. And it is!

The world of child’s play – even just stomping around the room – is also a world of comprehensive planning, attunement, responsiveness, awareness and integration of intervention.

Finding true friends

By Julie Proctor

Julie Proctor shares her experiences about her daughter Hannah’s journey to find true friendships while growing into an adult.

Young Hannah at primary school

This article about my daughter Hannah comes off the back of a conversation with someone about how I found Hannah's (who is now aged 26), high school years in a co-ed, mainstreamed school, with the backing of a learning centre.

We were particularly talking about friendships, and how Hannah has been able to make genuine friends from the mainstream group.

Then just a few days ago, I noticed a post on Facebook from someone with a younger child with Down syndrome, who had a moment at a birthday party that created a heartfelt reaction to seeing their child 'left out'.

I've been thinking about that situation since then, along with this recent conversation, and decided to share my experience in the hope it will reassure a few people moving through childhood, and onto the teenage years, and post school.

I recall a few 'stake in the ground' moments throughout Hannah’s childhood where, for me, I was facing the reality that as much as we wanted nothing less than an inclusive school environment for her to be nourished and challenged in, there were moments where it wasn't that simple.

38

Her first couple of years at school were pretty good as she developed genuine friendships.

When Hannah was about 7 years old, we started to notice that the children at school were starting to realise that Hannah was a little bit 'different' to them.

She did have genuine friends in her class, and was invited to play dates, and many birthday parties, and likewise, those children had no hesitation of coming along to play at our house, and come to Hannah's birthday celebrations too.

Gradually, though, the gap started to widen. I remember offering to come to visit her class with Hannah’s childhood photo album that told the story of her as a baby and early childhood.

I was able to explain to the little 7 year old children that sometimes, some children are born with some challenges in life, and they need great friends just like them to help them make the most of their life. I acknowledged them for being great friends and thanked them for their friendship to Hannah.

Those children grew up with Hannah at their sides, some were good friends of hers, but gradually, most became wonderful side-line, friendly advocates for her, but NOT her actual friends.

Young Hannah with lots of friends

In primary school they included her, and helped her. They encouraged her and were wonderful WITH her.

They came to things that Hannah invited them to all through her school days, and one even went on to become a speech and language therapist as a result of having Hannah as a childhood friend.

Another still calls her on her birthday each year to catch up. BUT they're not her real friends.

From age 7 or 8 onwards, she needed her friends to be those who sought her out and wanted to play WITH her. And of course, as we all know, you can't make other children BE friends.

I grieved again on the realisation that inclusion at school probably wasn't going to be where she made her own close friends. I've found a few of these grieving moments through her childhood where the reality is what it is, and then you just get on with it.

Just as we have all done from the moment we were told we had a slightly different journey ahead of us.

These are my ‘stake in the ground’ moments.

Where the moment reveals the way it is!

Moving onto middle school, the gap widened again. her friends from primary school were working their own way through puberty, and all

39

the highs and lows with their other friendships, and no longer had Hannah as a true friend.

They were still very good TO her, but she needed to establish her own friendship group.

The ideal of being in the mainstream was no longer the right place for her to find her own place at school.

We are very thankful for the Learning Centre at her school, who were very good at seeing how life was for her, and although she had form times, and one or two other appropriate subjects in the main stream classroom, she needed to feel accepted, safe, and in an environment where she could learn.

She also needed her own friends. There was only a very small group in the learning centre at that time, however, Hannah has made lifelong friends from the learning centre, and the only friends from school she still sees today are those ones!

She also did her best learning being out of the mainstream by then. She needed a different level of teaching, and there was little to be gained by being in the mainstream classroom if she wasn't able to keep up.

Another stake in the ground moment for me was when Hannah was 17 and was going to her first senior formal.

Hannah Proctor at her work at the early childhood centre in Christchurch

As the years of schooling moved on, so the gap began to widen again.

It was so beautiful and exciting to have her all dressed up for the formal, and get to go along with some of the genuine friends she had from the learning centre at school where she was safe to just be her.

She had her photo taken with many of her regular friends who had been right through school with her.

It was lovely. But it was also sad. I was a little sad to notice that Hannah would never have the chance to go on to carve a career path, go to Uni or pick what she was going to do in life should the opportunity arise.

I took the moment to acknowledge the feelings and then accept it, to secure that stake as another acceptance moment and move on again.

My takeaway for you in this is to ensure you create the right environment for your child to be CELEBRATED, AND NOT JUST TOLERATED.

40

If mainstream is just putting friendly people around your child and not giving them a chance to blossom and grow, then look to where they can be themselves and be celebrated for all they are.

You can't force others to be their friends, and we all want to choose our own friends in life, so ensure they can access the groups that will give them a chance to have true friendships.

Acknowledge those who do extend the hand of friendship - they will need those skills for life to ensure when they become the next employers in society, they will be wonderful advocates for the likes of our own, to know that they can make a difference.

Initially, I wanted the ideal of mainstreaming to offer Hannah the best from her education, but by year 9 we were fully on board with all the help she was getting from the Learning Centre.

Hannah Proctor has grown into a confident, independent young lady

The extra help Hannah has received to help her do the best she could has resulted in her now having an appropriate, part-time paid job working in a preschool that her teacher aide ensured she succeeded at before she finally left school at age 20.

She has an interesting and fun life, belonging to a dance/drama group, going to a structured programme for young adults called Youth Space, two other programmes that she loves, and has a large friendship group - all with different disabilities and mixed abilities.

They are her true friends with no barriers. They talk to each other often on Facetime outside of their weekly catch ups.

When they get together, they have the BEST time! They simply know how to have fun, and I personally have double the fun with them, than I could even anticipate having with my own friends.

41

As a speech therapist at the Champion Centre once said to me for Hannah - "Expect a lot from her. Others won't, so you need to!"

I have always expected the best for her, and from her. And as much as we all have these stake in the ground moments, and want the absolute best for our children, we do sometimes have to accept that the best thing for them is not always our dreams FOR them.

Their best times may well be with the ones who fully embrace them as true friends, no matter what.

Regional Focus

Success in School: for children who learn differently

By Paula Beguely — Community Liaison, Auckland Down Syndrome Association

ADSA has been running an education course for schools since 2008. This course has gone from strength to strength – and is now a full two-day workshop – well attended by schools from across Auckland, as well as some from other areas of New Zealand too. Anyone is welcomed with open arms.

This year our workshops are held at Ellerslie Event Centre. This venue has been fantastic to work with, while Waipuna Lodge is off-limits as an isolation facility.

The course runs twice a year – in March and August. The March 2021 course was attended by 53 participants from 22 schools across Auckland.

Roles included SENCOs, teachers, teacher aides, learning support assistants, special outreach teachers and parents.

We were also delighted to have Maree Kirk from STPDSNZ, as well as representatives from CCS Disability Action and UpsideDowns.

42

Sadly, several schools from outside of Auckland were not able to attend – given the quick changing alert levels we were experiencing at the time. Indeed, the change to Level 2 came just a few days before our course – and I breathed a loud sigh of relief as the course coordinator.

Our next course is 9th and 10th August – and we expect over 50 attendees.

The ADSA course is now called Success in School: helping children who learn differently.

While there is a large focus on children with Down syndrome – feedback from attendees is always that the knowledge and practical tips they have learned during the course will be useful to helping many students – not just those with Down syndrome.

Kirsten McDonald has facilitated the Success in School education course for ADSA since 2018.

Language and communication are great passions of hers, having trained teachers for English as a foreign language for several years. She is also an accredited Makaton trainer, and a Toastmaster DTM extraordinaire.

All these skills combine to provide us with a fantastic facilitator who genuinely cares about the course. She is wonderful at introducing speakers, summing up after each presentation and her passion to impart knowledge is genuine.

In addition to facilitating the course, Kirsten presents the “Learner Profile of Children with Down Syndrome” section where she shows her tremendous knowledge of children with Down syndrome, and of course talks about her experiences as Joshua’s mum (Joshua is in year 3 at Orakei School in Auckland).

The presentation is based around research by Down Syndrome Education International and their guidelines are referenced throughout the course.

Kirsten and myself, on behalf of the ASDA, have been running the course in 2019, with Kirsten at the front providing support to presenters and me at the back making sure things run smoothly.

It is a fantastic opportunity to mingle for a few days with people who make such a difference to our children. Now that my daughter is about to start primary school, this course is taking on even more meaning for me.

Across two days the course offers 12 presenters – covering a wide variety of topics.

ADSA is extremely proud to have three of our own self-advocacy members presenting at the workshops Edward Borkin, Emma Ferens and Amelia Eades who add a great dose of authenticity and reality.

Their presentations about the challenges of school years, messages to teachers, and hopes for their future are interspersed throughout the course.

Edward Borkin opens the workshop on Day 1. Edward is a great speaker, and he is also a member of STRIVE. He is a wonderful self-advocate – and firmly lets the audience know that they need to support children with Down syndrome to learn. Do not do it for us, is a key message!

Often Edward’s Dad (John) jumps up to the microphone for a “few quiet words” with the audience. He tells of the mountains that have been climbed since Edward's education journey started, the battles that had to be fought – just to get a shared notebook going between home and school.

43

In a few minutes there is not a dry eye in the room. This really hits home the importance of a good relationship and open communication between schools and families.

The Borkin family is among the founding members of ADSA and it is such an honour to have their participation in the conference.

Next up is Dr Jude McArthur presenting on Inclusive Education. Her wealth of knowledge, experience and passion in this field is unrivalled and she uses this to quickly shift the perspectives of participants and ensure that everyone is on the same page with what inclusion really is. This is done in an interactive way – giving time for groups to draw on personal experience (a lot more information about Jude is available on the ADSA website).

Kirsten is next, presenting the Learner Profile – and this gives a great overall view of how our children learn, and how Down syndrome impacts learning and behaviour.

After lunch Amelia Eades steps up to the lectern to talk about her school experience. Amelia attended several schools. She touches on what was challenging about the school environment, and how making friends was quite difficult.

She also talks about what she enjoyed about school and the areas where she felt the most included. This is always quite emotional – and very important for our audience to hear.

For the past few years our Behaviour and Friendships sessions have been presented by Phillippa Lilburn. Unfortunately, Phillippa has now finished her season as a Success in School presenter – and August 2021 will see two new faces.

Our Behaviour course will be presented by Vanesse Geel, a Psychologist with the Ministry of Education. Vanesse has a wealth of experience in schools around behaviour and wellbeing for children with learning support needs.

Fehm Hussain – SENCO at Orakei Primary – will join us to present the Friendship session.

Day one is a lot of listening and setting the scene for how our children learn. It is a very full day!

The second day is a lot more practical, and we aim to give participants a lot of strategies that they can take back into the classroom, playground, and school community.

Edward Borkin presents at the Success in Schools workshop

Margi Leech talks about Numicon at the workshop

As coffee cups are being drained – Emma Ferens steps up, and always captures our attention.

Emma talks about school, what she found difficult, and what she wishes she had learned.

She also updates us on what she is doing now – and of her dreams to be a famous actress. In March 2021 she was able to let people know about her gift card business – and may have even got some new orders.

Our numeracy session is split into two parts. The first presenter by Dr Rhonda Faragher – ‘Doing Maths that Matters’. She is the director of the Down Syndrome research programme at the University of Queensland and the presentation is done via a video which Rhonda has made specifically for ADSA. Her presentation talks of some of the learning challenges in numeracy and assures the audience

that using a calculator is OK! Rhonda has also re-recorded her video in time for the August 2021 course to incorporate some of her latest research, and to reference the DSI education guidelines.

Flying in with the practical solutions to numeracy is our very own Margi Leech – who gets out the Numicon sets, and does a crash course.

There are many lightbulb moments here – and participants are fizzing with excitement after an hour. Suddenly maths seems more accessible to so many kids.

After a quick morning tea – we fasten our seatbelts for 60 minutes of literacy with Dr Sally Clendon.

Sally hardly draws breath – but she covers her subject in a fantastic, easy to follow presentation – highlighting latest research, practical examples, and giving many great gems for teachers to take back to school.

44

Amelia Eades shares her experiences with the workshop

Fiona Kenworth of Small Talk Therapy – presents her session after lunch – on using visuals to access the curriculum. This is a fantastic 90 minutes of theory, real classroom examples, videos, and practical exercises for participants. Fiona’s focus is on making the use of visuals easy and simple – and also encouraging a whole class approach.

Again – there is much excited chatter after this session.

The final presentation of the workshop is by Andrea Smart - Practice & Implementation Advisor for Learning Support at the Ministry of Education.

She supports managers and specialists to deliver on key Ministry of Education initiatives and quality practice for students with complex needs.

Andrea’s topic is Collaboration for Success – which takes us through the Individual Education

45

Plan process. She is an expert myth buster and knows the process inside out.

In March 2021 we had a record 90% of participants provide us with feedback and the feedback was better than ever.

Success in Schools is a highlight twice a year in the ADSA calendar – and one of the best parts of my job in the Community Liaison role.

We are looking forward to the next course – on 9th and 10th August. Hope to see you there.

Libby and Ari at the premiere

Poppy and Libby Hunsdale take New Zealand by storm Libby Hunsdale has taken New Zealand movie theatres by storm after the movie Poppy first screened in late May. Poppy is the first New Zealand movie featuring a lead actor with Down syndrome and the New Zealand public has taken the movie and Libby into their hearts.

Poppy maintained its position in the top 10 movies at the box office across the country for the first five weeks when edition went to print.

The response from the public and media can be encapsulated into “a classic New Zealand feel good story”.

Libby has been singled out for praise for her performance as a young woman with Down syndrome who takes control of her life in order to follow her dreams and for her onscreen chemistry with her fellow performers.

46

“Libby Hunsdale won me over from the very first shot,” said reviewer Simon Morris from Radio New Zealand. “Libby’s a firecracker with a remarkable range beautifully guided by director and writer Linda Niccol.”

James Croot from Stuff agreed: “Poppy is a nuanced, vibrant and comedic tour de force.”

Libby has been travelling around the country promoting the film from her hometown of Whanganui to Masterton, Wellington and Auckland where she has supported both the release and various fundraiser screenings.

The movie has been used as fundraiser for local Down syndrome groups, Special Olympics and Riding for the Disabled.

She has used her time in the public eye to advance the film’s aspiration to shift perceptions about disability and to focus on the abilities message.

On top of all those appearances, Libby has been all over TV including the Sunday Programme, and on a Saturday night Lotto draw.

Since the movie has launched, Libby has been a guest speaker at various service organisations and her old primary school and has recently recorded an interview with Matt Wills at ArrowFM who hosts a weekly show Wheels on Fire aimed at changing attitudes towards people with a disability.

She has also been a guest speaker at Lotto NZ’s annual staff event participating in a Q&A with Sonia Gray.

At all her engagements, Libby’s main message is simple: “It’s ok to be yourself – even when people judge you. Be brave. And together we can make a change.”

IHC Library How do I remember all that?: A story to improve working memory

By Bryan Smith This is a story about a boy named Braden who has a hard time remembering things. His wise teacher and loving mother both teach him strategies to help him remember things at school and home.

The graphics are clean, crisp, and colourful. The techniques and tips used are fun and helpful. This book is a great tool to help teach kids how to remember the important things in their lives. I plan to read this book with my own children and set in to practice many of the suggestions given.

Review from Goodreads

Harrison Spader, personal space invader

By Christianne Jones "Harrison P. Spader sat a little too close. Shook hands a little too long.

High-fived a little too hard. And hugged a little too much. Harrison P. Spader was a personal space invader. But that all changes when he learns the Space Saver rhyme: Arms out front, then out real wide. Now place your arms back by your sides. Author Christianne Jones uses humour and relatable situations to teach early learners about self-awareness. This entertaining picture book in the Little Boost series will tackle a much-needed topic for teachers, parents, and librarians." -- Publisher's website

Ask first, monkey! : a playful introduction to consent and boundaries

By Juliet Clare Bell "Meet M o n key.

Ti c k l e t a st i c M o n key.

He's the best tickler in the world, ever; even his mum says so. And there's nothing he loves more than tickling ALL his friends at playtime!

47

But what happens if some of his friends don't want to be tickled? This picture book shows children aged 3-6 what consent is and why it's so important. With parent and teacher guidance included, it is an ideal resource to use in the classroom to help young children understand issues of consent and personal boundaries, and to teach them to consider the feelings of others.

Made possible : stories of success by people with learning disabilities - in their own words Edited by Saba Salman Review: "There is no question t h a t t h i s i s a n e ss e n t i a l , invaluable book. Social affairs journalist and campaigner Saba Salman invited nine people with learning disabilities to tell their own stories for 'Made Possible'. They describe how they overcame the prejudices and obstacles that have for too long barred the way to the world of work. The odds are stacked against these authors, but they have found their vocations and their place, and this inspiring book is a testament to their achievement. Salman has edited nine autobiographical accounts and, at times, the stories are both sad and shaming... Salman, the sister of Raana, a woman with learning disabilities, reminds us all of the fact that we must never leave disabled people on the outskirts again... 'Made Possible' is not another account of the role played by loving relatives and well-meaning agencies, but people with learning disabilities have achieved for themselves..." - part of a review by Michael Baron published in the magazine Community Moves vol 34 no1, 2020: 29.

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

Down syndrome advocate joins co-design team for Project Mobilise The New Zealand Down Syndrome Association congratulates Andrew Oswin for joining the codesign team for Project Mobilise.

Project Mobilise was launched recently by the Human Rights Commission to inspire social change.

Over the next few months, Project Mobilise will be working hard to understand attitudes surrounding disability – the stories, beliefs, and assumptions held by New Zealanders.

The project team aims to create a media campaign based on these insights to help people think differently about disability.

Andrew Oswin has been part of the leadership team of the NZSDA self-advocacy group STRIVE for many years.

He has also been an eloquent and passionate advocate for New Zealand people with Down syndrome on many national and international advisory groups.

NZDSA National Executive Officer Zandra Vaccarino has congratulated the Disability Rights Commissioner, Paula Tesoriero, for this muchneeded initiative to shift and change attitudes towards disability in Aotearoa.

“The NZDSA will be supporting and promoting Project Mobilise as we believe that changing attitudes is crucial for addressing discrimination, so that all people with Down syndrome can enjoy the same rights as all citizens of New Zealand,” says Ms Vaccarino.

48

“The NZDSA believes a national media campaign is vital to help people think differently about disability, and to celebrate diversity” says Vaccarino.

She adds that Project Mobilise will create the space for all New Zealanders to reflect on their attitudes and to consider how we might contribute to dismantling barriers that disable people from having full access to their community.

To disrupt harmful narratives and help New Zealanders view disability in an entirely new way the Human Rights Commission is working with creative agency Curative to better understand the stories, beliefs, and assumptions held by New Zealanders about disabled people and co-design a national campaign strategy to change those attitudes.

Project Mobilise is anchored in co-design, a human rights framework, and Te Tiriti o Waitangi.

The project aims will share power, enable authentic participation, prioritise relationships, and centre the perspectives and realities of disabled people.

Project Mobilise is working collaboratively with the disability sector, and wants the disability community to be a part of Project Mobilise.

Visit www.projectmobilise.co.nz to learn more and find out how you can take part.

NZDSA Notices

Limited spaces!

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 July 2021.

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

Announcing the New Zealand Down Syndrome Association's Annual General Meeting Date: Venue:

Time: RSVP:

Friday 15th October 2021 Globe Theatre, Theatre 2, 312 Main Street, Palmerston North 7:00pm

By Monday 27th September 2021 to Rose te Kaat or na@nzdsa.org.nz Please indicate if you have any special dietary requirements.

Please check our website nzdsa.org.nz for any updates regarding the AGM.

49

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

Paula Beguely

Donna Higgs

Sandra Slattery

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

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

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

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

50

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

Ava Saba with the stars from Poppy (right) Left to right Nikau Ru Bay, Arabella Barbara who is holding Ella Newton, Ada Bang, Otis Payton, Iris Cooper & Sadie Shanley in front (centre left)

Isabel Walker, right, with her mum Jemimah and a friend (centre right) Agora Coffee bars Instagram introducing Dain who volunteers twice a week in honour of World Down Syndrome day. He even got a comment from Waikato Chiefs liking his jersey (right)

51

Me and my pet

Brendon and Toby

Liam Coard taming a tiger at Wellington Zoo

Robert Nelson and Lochie