CHAT 21 Summer 2024

COMMUNICATION | HOLISTIC | ADVOCACY | TAONGA

Editorial – Summer 2024

By Sarah Paterson-Hamlin

Ngā mihi o te tau hou whānau!

I hope you’ve had a wonderful summer break with lots of fun and not a lot of sunburn! This edition’s theme is long, hot summer. I am so excited and thankful for all the awesome snapshots of our community having fun in the sun. After last year’s rain and COVID the summer before, I know I’ve loved getting out as much as possible and the photos we’ve been sent show loads of you have as well!

Of course, warmer weather has its less sunny side. Our Easy Read guide to being sun smart has tips to help protect us from the harmful elements of sunlight, and Emma Ferens shares her passion for the environment in this time of climate crisis in her Down Write Brilliant piece. Some escaped the scorching summer, like Andrew Oswin who reports from a wintery Europe.

One of the staples of a Kiwi summer is of course Waitangi Day. From the Treaty grounds to my home town of Ōtepoti, more people got involved with the kaupapa of our national day than in decades, and the weather certainly came to the party as well! I hope you enjoy the piece on the relationship between the Treaty of Waitangi and disability rights in Aotearoa New Zealand.

As we move past the holidays, there’s plenty to look forward to. World Down Syndrome Day is coming up on 21 March of course, and if you’re involved with any events or actions to mark the day, please give me a shout at editor@nzdsa.org.nz! The campaign theme set by Down Syndrome International this year is Health Equity, and our autumn edition will be all about that theme.

World Hearing Day is also coming up in March, so we’ve got some information in this edition to mark the occasion. I learned a very helpful new word putting that together – Hyperacusis – which is a sensitivity to sound. It’s something I experience a lot as an autistic person and this year’s Christmas present from my husband was a pair of noisecancelling headphones. An absolute game changer!! Which reminds me – if you have any products or services our readers might enjoy or benefit from, don’t hesitate to get in touch about our very reasonable bespoke advertising options!

From Iron Age people with Down syndrome to present-day supermodels, there’s something for everyone in CHAT 21, so before autumn really starts kicking in, slip, slop, slap, wrap, and take your copy to the nearest beach and enjoy!

Aroha nui.

Summer Christmas at the Paterson-Hamlins

Instagram — reel of dancer goes viral

On the Socials

A video of a British man with Down syndrome performing a jive with his dance partner has so far been watched over 30 million times on Instagram within two weeks. Nathan Morris reached the semifinals of Britain’s Got Talent in 2022. He and his dance partner, Jo Banham train at a dance school in Northampton and did not know they were being recorded at an event in Blackpool, Lancashire. “It went a bit mad; a few of the views are from us watching it again and again,” said Ms Banham, a pro-dancer who featured on Dancing with the Stars in the Netherlands. “They took some sneaky recordings. We know they record the festival but we did not know they were recording us and all of our lovely joyful moments.”

Podcast – New Zealand’s Robyn Paterson features on Lucky Few podcast

When Down for Love hit the United States last year, the hit podcast, The Lucky Few gave it a glowing review. This January, they continued the conversation in a special episode with the show’s producer (and sister of your favourite CHAT 21 Editor!) Robyn Paterson.

Lest I be described as bias, here’s how the trio at The Lucky Few describe it: “Robyn shares the challenges and impactful moments of filming Down For Love, along with the differences from other reality-type shows. We chat about the casting process to ensure diverse and authentic representation, and so much more! We promise there are no spoilers, just an incredible conversation about the responsibility to tell diverse, authentic, and honouring stories of people with disabilities.”

TikTok – Guenther Brothers

These two Aussie brothers have been delighting TikTok followers for a while now with their antics and adventures. Kayah has Down syndrome and his brother lives with hearing loss. Together they also run the clothing brand Keep Going Label. Their content ranges from the silly to the helpful, but the number one theme is the brothers’ love for each other and the rest of their whānau. Check them out on their TikTok account @ guentherbrothers.

A quick warning – some of their content is less appropriate for younger audiences!

Nathan & Jo

Robyn Paterson

Guenther Brothers

Toitū te Tiriti

Part of every summer in Aotearoa New Zealand is Waitangi Day. The commemorations held every 6th of February on the anniversary of the signing of our nation’s founding document – the Treaty of Waitangi/Te Tiriti o Waitangi. For many, it also marks the end of the summer holidays and the beginning of te tau hou Pākehā – the new calendar year.

Memories of Waitangi for many are of hot days on the marae, in the park, at the beach, or chilling at home with whānau and enjoying a day off. In 2024, Waitangi Day was a scorcher across the motu, including fires in Canterbury and temperatures well into the 30s in many other places.

In 2024, there has been a lot of kōrero (discussion) around the principles of the Treaty. Much of this has been driven by the current coalition Government’s actions including proposing a Treaty Principles Bill, reprioritising some te reo Māori names of Government agencies, disestablishing Te Aka Whai Ora (The Māori Health Authority), and other controversial policies. But what are they and how does this impact the Down syndrome community?

Treaty Principles

The principles of the Treaty have emerged over decades of legal cases in Aotearoa New Zealand. In part, they have emerged out of the differences between the Māori and English texts of the Treaty. In 1987, the Court of Appeal determined there were two core Treaty principles: “partnership” and “active protection”. The principle of partnership has been interpreted by the Courts since that time as including a duty for the important decisions to be made through consultation between Crown and Māori. As this principle has become increasingly established in Aotearoa New Zealand, agencies such as the Whaikaha/Ministry for Disabled People have developed accordingly.

Part of the creation of Whaikaha included research into prevailing Māori attitudes towards disability prior to contact with European settlers. These attitudes were less medicalised than predominant British approaches to disability.

In 2012, a Cabinet paper highlighted the importance of Te Tiriti o Waitangi in its response to disability:

“The Treaty relationship as set out in the New Zealand Disability Strategy, and the Māori Disability Action Plan, will continue to be core to this future vision. It will be based on three key principles of participation at all levels; partnership in delivery of support, and the protection and improvement of Māori wellbeing.”

The following year, Cabinet agreed to demonstration sites in Canterbury and Waikato of Enabling Good Lives (EGL) principles. In 2014, an independent group of Māori involved with the EGL approach developed Te Ara Tika – a resource for tangata Whaikaha (disabled people) and their whānau.

When the Ministry Whaikaha was finally established in 2021, it was done so based on two founding principles:

• Lead a true partnership between the disability community, Māori, and Government.

• Help transform the disability system in line with the Enabling Good Lives approach.

And so, the Treaty principles and Enabling Good Lives principles are intertwined in Aotearoa New Zealand.

Tiriti Whaikaha

The Ministry Whaikaha takes three crucial concepts found in Te Tiriti o Waitangi for its mahi (work). This is how the Ministry defines those principles:

Kāwanatanga – partnership and shared decisionmaking

Rangatiratanga – protection, revitalisation, and development of taonga

Rite tahi – equity, participation, and equality and non-discrimination.

The establishment of Whaikaha is also guided by two very important international agreements of which Aotearoa New Zealand is a signatory. The United Nations Convention of the Rights of Disabled People and the United Nations Declaration on the Rights of Indigenous People.

In this way, the work of Whaikaha to honour disabled New Zealanders cannot be separated from its founding mission to honour Te Tiriti o Waitangi. The Ministry’s creation was a world-first and has been celebrated by disabilities advocates around the world as an example of positive partnership. The centrality of Treaty principles in the kaupapa of the Ministry is key to this spirit of partnership.

Through the articulation of these Treaty principles, we can see a direct correlation to the aspirations and advocacy of disabled people. Advocates for the rights of disabled New Zealanders and those advocating for the Treaty to be honoured are each seeking a mana and an autonomy that has been withheld. We might see a correspondence for example, between the long and ongoing fight for adequate and flexible Individualised Funding and the decades of mahi undertaken by an iwi to obtain a Treaty of Waitangi settlement.

For many decades in Aotearoa, the fight to uphold the Treaty of Waitangi and the fight to uphold the rights of disabled people have operated in isolation from each other. In the long journey to its creation, Whaikaha provides a path for both kaupapa to work together in the best interests of all New Zealanders – Māori or Pākehā, disabled or non-disabled.

It is in this spirit that this whakatauākī was written for the Ministry Whaikaha by Tim Worrall of Ngāi Tūhoe.

Me he aka rātā ka tipu-tahi, ka puāwai-tahi kia tū kaha I ngā hihi ō Tamanuiterā.

Like the rātā vines constantly growing and flourishing together to stand strong in the warmth of the sun.

Helpful te reo Māori terms

Mate pūira kehe — Down syndrome. This phrase has been in use for several decades as the standard Māori translation of Down syndrome. It is made up of the words mate (condition), pūira (chromosome), and kehe (odd-number).

Whaikaha — disability/disabled This term is a more recent word for disability in te reo Māori. It is associated with Maaka Tibble who has advocated for this word to signify disability in te reo Māori from 2015. Tibble found himself uncomfortable with the existing terms to describe himself; kāpō (blind), turi (deaf), and hauā (an older term for disabled). Whaikaha also means to have strength or to be enabled in te reo Māori.

Kura kōrero — the gift of speech. This phrase is sometimes utilised by the UpsideDowns Education Trust.

Kōkiri — advocacy or to advocate Mana taurite — equal status, equity, equality Hapori — a community, family group, society. For example, the Down syndrome community might be translated as te hapori mate pūira kehe.

Whakarangatira — to treat with dignity

Around the World

Valencia, Spain — First person with Down syndrome elected to a parliament in Europe! Mar Galcerán is a 45-year-old woman with Down syndrome. In September 2023, she was elected to the Corts Valencianes (the legislative body of one of Spain’s 17 autonomous communities). “It’s unprecedented,” the 45-year-old told the Guardian. “Society is starting to see that people with Down syndrome have a lot to contribute. But it’s a very long road.” In 2020, Éléonore Laloux became the first person with Down syndrome in France to be elected to public office, as a city council member in the northern town of Arras. In Spain, Galcerán’s was preceded by Ángela Bachiller, who in 2013 became Spain’s first city councillor with Down syndrome in the northern city of Valladolid. Galcerán is believed to be the first in Europe to be elected to a regional or national parliament.

London, UK — Scientists identify the gene behind heart defects in people with Down syndrome

This January, researchers at the Francis Crick Institute and UCL announced they had identified a gene that causes heart defects in Down syndrome. Reducing the overactivity of this gene partially reversed these defects in mice, setting the scene for potential future therapies for heart conditions in people with Down syndrome. Using genetic mapping, the researchers identified a gene on human chromosome 21 called Dyrk1a, which causes heart defects when present in three copies in the mouse model of Down syndrome.

Victor Tybulewicz, Group Leader of the Immune Cell Biology Laboratory & Down Syndrome Laboratory, said, "Our research shows that inhibiting DYRK1A can partially reverse changes in mouse hearts, suggesting that this may be a useful therapeutic approach. "However, in humans the heart forms in the first eight weeks of pregnancy, likely before a baby could be screened for Down syndrome, so this would be too early for treatment. The hope is that a DYRK1A inhibitor could have an effect on the heart later in pregnancy, or even better after birth. These are possibilities we are currently investigating." If this gene name sounds familiar, it might be because of the subject of the TV Show There She Goes. Stay tuned for a special review of this show in our Autumn edition!

Yorkshire, UK —

2,500 year old skeleton with Down syndrome discovered. An infant with Down syndrome dating from the Iron Age has been discovered with a new method of DNA testing. The technique measures the amount of chromosomes in ancient human cells "more precisely", said researchers. Professor Ian Armit, from the University of York's Department of Archaeology, said: "Ancient DNA samples decay over time and can often become contaminated. "A new technique was needed to help researchers overcome these challenges so that we could see just how far back we can trace these conditions, and we now know that they have been part of human history for a considerable period of time - more than 2,000 years in some cases." Pontus Skoglund, group leader of the Ancient Genomics Laboratory at the Crick, said: "Our method is able to classify DNA contamination in many cases, and can help to analyse incomplete ancient DNA, so it could be applied to archaeological remains which have been difficult to analyse. "Combining this data with burial context and possessions can allow for a historical perspective of how sex, gender and diversity were perceived in past societies."

STRIVE Funshop

By Andrew Oswin

Let me tell you about a Funshop I attended with self-advocates from all over New Zealand.

It was a three day STRIVE Funshop in Palmerston North where STRIVE members were staying at the Copthorne Hotel. At the December 2023 Funshop, we were focusing on the United Nations Convention on the Rights of Persons with Disabilities, STRIVE Induction Part 2, the STRIVE Afternoon Tea Club, Presentation Skills, Body Language, how to prepare an abstract, and reading Article 11 in the United Nations Convention on the Rights of Persons with Disabilities. It is about Emergencies.

We all went shopping to buy Secret Santas for everyone and also something to wear for the Christmas End of Year Dinner on the Saturday night which had been a three-course meal which turned out really lovely celebrating with everyone wearing different Christmas hats. It was so awesome seeing people mingling with each other having conversations at dinner wearing their hats.

We would all like to thank Zandra for all the hard work she has done for putting together for hosting this Funshop and the services she has given to the New Zealand Down Syndrome Association Special thanks also goes to Jess Waters, Averil Glew and Franco Vaccarino for supporting the new members of STRIVE.

DWB — The Enviroment

By Emma Ferens

We all need to clean up New Zealand in the North and the South Islands... that we needed to keep our land tidy and clean it is the same with our beaches to make sure for all our sea animals to be safe we do care about all sea mammals that we don't them to

be sick and dead with all the plastics and everything that we need to throw away from all the sea animals for them not to be caught into them at all  (Emma’s range of environmentally-themed pieces available at emmaline.co.nz)

Down Write Brilliant

By Andrew Oswin

Hello CHAT 21 Readers

I would like to tell you about a seven week overseas holiday I went on with my parents. We have made some really special memories along the way on the aeroplane to different wonders of our world, walking on beaches on Australian soil, train rides throughout Europe, exploring castles, experiencing wildlife, dining on various cuisines, enjoying European gardens, concerts and fascinating attractions that will inspire you.

So let me tell you about these interesting photos of my highlights.

Photo 1: Here I am standing inside Warwick Castle with models of horses wearing armour. Warwick Castle is a medieval stone castle that was built in 1068 during the reign of King William the 1st the Conqueror. It got used as a stronghold until the early 17th century, when it got granted to Sir Fulke Greville by James the 1st in 1604. Greville converted it to a country house, and it was owned by the Greville family (who became the Earls of Warwick in 1759) until 1978, when it got bought by the Tussauds Group.

Photo 2: This is Bath Abbey Cathedral at night as viewed from our apartment window. The city of Bath is very famous and very well known for its Roman baths.

Photo 3: This is me posing as the English playwright and poet of William Shakespeare in Stratford-UponAvon. He wrote 39 plays, 154 sonnets and three long narrative poems. Shakespeare is widely regarded as the greatest writer in the English language.

Photo 4: This is me in Paris at The Eiffel Tower. It got built from 1887 to 1889. The Eiffel Tower got its name after the engineer Gustave Eiffel who designed it. This tower was used in a scene from the 1985 James Bond spy film A View to a Kill directed by John Glen.

Photo 5: This photo is of me with Dad at the Caversham Wildlife Park stroking a koala bear with the back of our hands while the koala bear was eating eucalyptus leaves.

Photo 6: This is a photo of window that got made of William Shakespeare which my parents and I found at the State Library Victoria in Melbourne.

Happy reading to CHAT 21 Readers!

By Andrew Oswin, STEP UP Member Christchurch

Photo 5

Photo 3

Photo 1

Photo 6

Photo 4

Photo 2

Our people

William & Mum, Ruth, having fun in the pool

Left & Right: Essie camping at Hahei

Charlotte’s first fishing trip at Big Bay

Our people

Left & Right: Aiden & his brothers

Left & Right: Aiden in Harakeke

Let’s hear it for World Hearing Day

At least half of people with Down syndrome will experience hearing issues at some stage – as will many other people! Around the world, there are more than 1.5 billion people living with hearing loss. That’s why we’re celebrating World Hearing Day on 3rd March this year.

What is hearing loss?

“If our ears are working well, they capture sound waves and convert them into messages that our brains can understand. The ear has three main parts: outer, middle, and inner; and it is made up of bones, hairs and nerves that carry sound waves to our brain which interprets the sounds we hear. Each part of the ear needs to be working for us to hear well. We care about hearing health because people with hearing disorders are at higher risk of developing delays in their receptive language, expressive language and speech which could lead to academic, social and emotional implications.” –Down Syndrome Research Foundation

Types of Hearing Loss

• Conductive

This is the most common type of hearing loss for people with Down syndrome. It is caused when sound cannot get through to the outer and middle ear. Treatment usually involves wax removal.

• Sensorineural

This type is associated more with aging and occurs younger in people with Down syndrome than in the general population. It’s usually more permanent than conductive hearing loss as it impacts the nerve pathways to the brain.

• Mixed

A combination of conductive and sensorineural hearing loss.

Auditory Processing

This refers to what we do with what we hear, rather than our ability to hear itself.

Central Auditory Processing Disorder (CAPD) is when someone finds it difficult to identify, organise, and interpret what they hear – even when they can hear just fine.

Hyperacusis is when someone is more sensitive to certain sounds. This might cause distress or anxiety, leading to avoidance of certain situations. Both are more common in the Down syndrome population. Hyperacusis is also more common in the autism population.

These conditions can be treated with medication, speech and language therapy, and hearing protection.

Common Signs of a Hearing Disorder

The following is from the Down Syndrome Research Foundation:

• Does not respond

• Frequent rubbing of ears

• Discharge from ear or sour smell

• Wanting to turn volume up high

• Difficulty modulating voice volume

• Difficulty understanding words or instructions

• Delayed speech and language skills

• Strong preference for visual information as opposed to auditory

• Avoidance of social situations or withdrawal

• Noisy environments are overwhelming, does better in quiet spaces

• Difficulty maintaining attention

• Problems locating source of sound

• Needs things to be repeated

• Academic difficulties particularly with reading or spelling

Since there are comorbidities and learning differences associated with Down syndrome, it is important to rule out that hearing is not contributing to the difficulties seen above.

Places that can help with hearing issues

• Deaf Aotearoa is a nationwide organisation that represents Deaf people’s voices and also provides services for deaf people such as advocacy, translation, employment support, and workshops. They are the New Zealand representative on the World Federation of the Deaf. https://www.deaf.org.nz/

• Hearing New Zealand/Te Kahui Rongo o Aotearoa is a nationwide charity that supports New Zealanders with hearing loss. Their website has lots of awesome resources, including resources for home, school, and workplaces. They also have a great shop with some very cool hearing-related products. https://www.hearing.org.nz/

• Deaf Children New Zealand/Tamariki Turi o Aotearoa is a parent-led organisation that supports whānau of children with hearing loss. They also support regional parent groups like Auckland Parents of Deaf Children Inc, Wellington Association of Deaf Children Inc, Canterbury Parents of Deaf Children Inc. and six other regional groups spread across the motu. https:// deafchildren.org.nz/

• Learn NZSL is a free online resource that helps anyone learn the basics of New Zealand Sign Language – one of three official languages of Aotearoa New Zealand. www.learnnzsl.nz

• The New Zealand Audiological Society website has lots of helpful information about hearing health checks, funding for hearing aids or cochlear implants, and where to find your local audiologist (a healthcare professional that treats hearing conditions). https://audiology.org.nz/

CHANGING MINDSETS

Let’s make ear and hearing care a reality for all!

Changing mindsets is crucial for improving access and reducing the cost of unaddressed hearing loss

Our people

Julian & Summer Santa

Left & Right: Kieran in Great Barrier Island

Julian & Sophia

Being Sun Smart

Easy Read Guide to protecting yourself from the sun and heat.

This article is about how sunny, hot days can harm us, and how we can protect ourselves and stay safe.

The sun sends out sunlight which we can feel and see as heat and light. The sun also sends out Ultraviolet radiation (or UV radiation) which we cannot see or feel.

UV radiation is what gives us sunburn. In New Zealand, our UV radiation levels are higher than many other parts of the world.

UV radiation levels are highest between September and April in New Zealand. The high levels at this time mean we can get sunburnt even on a cloudy day.

9 out of 10 times, skin cancer is caused by UV radiation. The sun can also make us too hot. Getting too hot can be bad for our bodies.

It can make us feel sick and cause things like our brains, hearts, and lungs to stop working properly.

This is why it’s important not to get sunburnt, not to get too hot, and be ‘Sun Smart’.

How can I be Sun Smart?

Between 10am and 4pm from September to April, if you go outside, Slip, Slop, Slap, and Wrap.

Slip on clothing that will cover as much skin as possible, protecting it from the sun. For example, shirts with a collar, long sleeves, trousers, or long skirts. Light fabrics like linen or cotton can help keep you cool.

Slop on some sunscreen every two hours and after going in the water. Make sure you cover everywhere that isn’t covered by clothes. Sunscreen should have an SPF number of 30 or higher.

Slap on a hat with a wide brim or with flaps that cover the face and neck. These are the parts of our bodies that get sunburnt the most often.

Wrap on some sunglasses to protect your eyes from the sun.

If you are feeling too hot, find some shade and drink some cold water. Before going out or making plans to go somewhere like the beach, check the UV forecast for where you are at niwa.co.nz or on metservice.com. These websites will also tell you what times of the day you will need to Slip, Slop, Slap, and Wrap.

Our people

Esther & her brother ready for a swim

The Big Connect is back! You do not want to miss New Zealand’s biggest Down syndrome video call on Thursday, 21st March 2024, at 7:30pm

For people with Down syndrome, stereotypes can stop them from being treated like other people. They get treated like children, underestimated and excluded — in the worstcase scenarios, they are sometimes poorly treated or even abused.

That is why this year’s World Down Syndrome Day theme is “End The Stereotypes”. Down Syndrome International defines a stereotype as “a set idea that people have about what someone or something is like. Stereotypes can be positive, negative or neutral, but they are often inaccurate or simply wrong!

While our community is spread throughout all corners of Aotearoa and unable to connect in person, we believe The Big Connect will be a great way to celebrate our community, identify ways to stop the stereotypes and ensure we are all together to celebrate World Down syndrome Day.

We will share lots of information leading up to the big event, so keep your eye out for more details on our Facebook page.

Save the date: Thursday 21st, March 2024 @ 7:30pm

LOTS OF SOCKS

World Down Syndrome Day 2024

Help support the CDSA this March by hosting a gold coin fundraiser.

We would be grateful if you would support the Down Syndrome community by hosting a gold coin “Lots of Socks Day” at your school or workplace during March. Wear your odd or loud socks in celebration of WDSD.

Why strange or odd socks?

Simply because chromosomes are shaped a little like socks and people who have Down syndrome have an extra chromosome. Odd socks also celebrate diversity in a fun way. People who have Down syndrome are different, but really are the same just like those odd socks in your drawer!

CANTERBURY: All Aboard

The CDSA are really looking forward to their fun family WDSD event to be held on Sunday 10th March. They are hiring a private train to take them through the picturesque Weka Pass on the Weka Pass Railway, and will have an afternoon tea picnic part way through the trip. Keep an eye out for photos of their fun time in future Chat 21 Editions.

NORTHLAND: Down for a Walk?

Hātea Loop, Whangārei Town Basin

Spot prizes, raffles and more — all welcome!

23 March, time TBA. Keep an eye on the Northland Down Syndrome Support Group Facebook page for updates.

c o m m u n i t y

This event is for members of the Auckl A wonderful way to meet other fam

c e l e b r a t e w i t h u s

Papatoetoe East Primary Schoo

138 Tui Road, Papatoetoe

From 11am - 2pm

b r i n g

your whanau picnic run & own picnic!

17.3.2024

f u n f o r e v e r y o n e

face painting, family races, sausage sizzle, market stalls, coffee, Rock your Socks parade, Star Jam dancing and loads of fun.

WEAR YOUR BEST CRAZY SOCKS and you could win a great prize.

some cash for sausage sizzle and raffles!

See facebook or adsa.org.nz for more details

WORLD

DOWN SYNDROME DAY

+ AKLFEST PICNIC

AOTEA SQUARE GRASSY AREA

THURSDAY 21 MARCH, 12.00pm – 2.00pm

Spark LIVE performances are one hour at 11.00am and 2.00pm

Come along to Spark LIVE and join our picnic to celebrate World Down Syndrome Day.

Join us for a fun lunchtime picnic in Aotea Square to celebrate World Down Syndrome Day. Enjoy music sessions with Raukatauri Music Therapy, ice-cream and hot chip food trucks kindly sponsored by Auckland Down Syndrome Association. BYO picnic rug! Wear your most colourful, mismatched socks to #rockyoursocks

Everyone’s welcome. Spark LIVE ticketholders will receive discounted food truck tokens.

The Willow Christmas Party

Just before Christmas many of our lovely CDSA families attended the Willows Cricket Club’s annual Christmas party at Loburn in north Canterbury. This fabulous event is organised for children who have disabilities and their Whānau, and is hosted by the Dormer family and the Willows Cricket Club every year. Once again there were so many fun things going on, including pony rides, a Pirate themed bouncy castle (always popular), balloon sculptures, ice cream, sausages, face painting and of course, what would a Christmas party be without Santa! All the lucky children received presents from Santa and there was a crazy lolly scramble when he left in his very cool vehicle, to tend to his reindeer.

Glenlothian Farm visit

On a very hot summer Canterbury day in January, some of our CDSA families headed to the Glenlothian Farm at West Melton to enjoy some animal fun. It was a gorgeous day and the kids and adults alike enjoyed feeding and patting the variety of animals and birds at the farm. We were also able to enjoy a picnic together on the deck overlooking one of the ponds at the farm.

NEO Notes

Kia Ora

I hope you’re having a wonderful start to 2024 and that this year brings you lots of love, laughter, joy, and opportunities to celebrate the achievements of individuals with Down syndrome.

In my opinion, summer is undeniably the best season and deserves to be celebrated to the fullest. That’s why I’m thrilled to see that the theme for this edition of CHAT 21 is a long, hot summer. I am looking forward to seeing how you have spent summer - the first thing I do when I receive CHAT 21 is to look at all the wonderful photographs and read the stories sent in by our members. I continue to learn and be inspired by all our wonderful families. I think by sharing our journeys, tips and even frustrations, we can connect as a community and build our capacity to support each other. So, I strongly encourage you to share your photographs and stories with us for CHAT 21, Enews, and Facebook. We want to hear about your summer, celebrations, achievements, and day-to-day activities. If you’re not a fan of writing, don’t worry, just give Sarah a call, and she’ll be happy to interview you and pen a piece for CHAT 21. Let’s share the ordinary and the extraordinary and make each edition of CHAT 21 unforgettable!

21st March 2024 World Down Syndrome Day (WDSD)

This year’s theme for World Down Syndrome Day is #EndtheStereotypes. I’m sure you’ve heard many stereotypical statements that create barriers to full inclusion of people with Down syndrome. Such statements perpetuate myths and even discriminate against people with Down syndrome. So, how do we change these stereotypes? I believe one way is to raise awareness of the individuality of people with Down syndrome by showcasing the range of roles, gifts, and talents of our diverse community across various media platforms.

This year, the NZDSA has planned two activities to celebrate World Down Syndrome Day. Firstly, we will collaborate with COOR Down and other global Down syndrome organisations to create a digital message to raise awareness about Down syndrome. We will share this with you and we hope that you will share it widely. Secondly, we invite everyone to join us at the Big Connect on 21st March at 7.30 pm to discuss how we can put an end to stereotypes. We will share the Zoom link through Facebook, Instagram, and Enews. We also encourage you to attend local events in your region so that you can connect with other families. We will share these events in Enews. If you have any events to share, please forward the information to Jess Waters, kiaora@nzdsa.org.nz. We hope you capture many wonderful moments celebrating WDSD and that you forward your photographs for the next edition of CHAT 21.

Kōrero and Kai

The NZDSA is excited to continue its Kōrero and Kai series in 2024. The focus of this series is to connect our community, to share information, and to explore Enabling Good Lives. These events will be held in various locations. The first event will take place in Napier in March, followed by Invercargill in April and Dunedin in May. We will return to Hawkes Bay at the end of May and then wrap up the series with a final online event later in the year. To stay updated with all the details about the Kōrero and Kai series, as well as other events we will be hosting this year, please follow the NZDSA on Facebook.

Youth Development Camp

Last year the Youth Development Camp not only included our usual adventure activities like archery, rock-climbing, abseiling, and team competitions, we also spent time discussing the Enabling Good Lives approach. It was a weekend of achieving goals, meeting new friends, having fun and enjoying delicious food.

If you like trying new things, meeting friends, and achieving goals, then apply to attend the 2024 Youth Development Camp. This exciting event will be hosted on the 22nd to 24th November at Vaughan Park and MERC. It will be another fun-filled weekend, with plenty of individual and team activities to enjoy. You may have already seen numerous photographs of this fantastic experience. To secure your spot, please send an email to na@nzdsa.org.nz.

NZDSA National Committee – Elections

The members of the current NZDSA National Committee are all volunteer parents who have been elected by NZDSA members within their respective

zones. Recently, a few committee members have resigned from their positions, which has resulted in vacancies in Zone 3, Zone 4, and Zone 6. So we welcome applications for these positions. Later this year, we will begin accepting nominations for the positions of President and Zone 2 representative. It’s worth noting that Maia, the current representative for Zone 1 Auckland, will be seeking re-election. However, the Treasurer, Zone 1, and Zone 5 representatives are still serving their current election term.

If you are an NZDSA parent or whānau member and interested in serving on the National Committee, please get in touch with me at neo@nzdsa.org.nz.

NZDSA National Achievement Awards

The NZDSA National Achievement Awards is an excellent platform that helps in ending stereotypes by recognising the unique and diverse talents of adults with Down syndrome. We are planning to host the 2024 National Achievement Awards later this year. We are accepting nominations until the 17th of April 2024; and both self-nominations and nominations from others are welcome. If you need a nomination form, please contact Linda te Kaat at na@nzdsa.org.nz.

Rose Award

In the previous edition of CHAT 21, we featured Shelley’s nomination for Wellington Zoo. Shelley has provided further feedback that last month Fletch presented the Rose Award to the team at Wellington Zoo during the Neighbours Night event. This exclusive event is for the community in the surrounding houses to visit the zoo. Fletch was the volunteer helper for the night, and over 1,800 people visited the zoo that evening, so it was a great evening to recognise their accessible and inclusive approach.

Left and above are photographs of Fletch welcoming visitors and presenting the Rose Award.

If you would like to thank an individual or organisation who either support individuals with Down syndrome or the Down syndrome community, then nominate them for the next Rose Award.

Please email me at neo@nzdsa.org.nz with 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”. I 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.

How you can support the NZDSA

We would greatly appreciate your help in expanding our services. If you know of any individuals or businesses who are interested in supporting the NZDSA, they could partner with us to not only continue providing our core services to the community, but also to help us achieve our vision of addressing more community needs. By working together, we can implement new projects that enable people with Down syndrome to be fully included in their community.

If you’d like to support us, there are several ways to do so. You can offer service support, resource support, product support, or even financial support. Financial support can take the form of helping us fundraise, buying some advertising space in CHAT 21, considering a workplace giving scheme, a donation, or sponsoring the NZDSA. If you’re interested in supporting us financially, please don’t hesitate to contact me at 0800 693 724 or neo@nzdsa.org.nz.

Konei rā Zandra

Our people

Emma at horse riding in Taupaki

Emma & her Poppa explore the Awa

Erika getting ready for Sense Rugby

IHC Library

On long summer days it can be good to take time to chill with a riveting read.

The first two are books I have browsed and are on my to read list. The first for its humour and the second because it is an important read on some of the history of disability.

The Cassandra Complex by

Holly Smale

Cassandra Penelope Dankworth is a creature of habit. She likes what she likes (museums, jumpsuits, her boyfriend Will) and strongly dislikes what she doesn’t (mess, change, her boss drinking out of her mug). Her life runs in a pleasing, predictable order. Until now. She’s just been dumped. She’s just been fired. Her local cafe has run out of banana muffins. Then, something truly unexpected happens. Cassie discovers she can go back and change the past. Now, Cassie should be able to find a way to fix the life she accidentally obliterated. And with time on her side, how hard can it be...?

The time travel device quite cleverly explores the common autistic experience of being constantly under a sense of pressure to get social situations “right,” wondering if it went okay, wanting to understand what happened better, or just not having enough time to process.

Now from the lighthearted to the serious: Unsilenced: a teacher’s year of battles, breakthroughs, and life-changing lessons at Belchertown State School by Howard C. Shane

Summary: “The year is 1969, and fresh-outof-college smart aleck Howard Shane has just landed his first teaching job at Belchertown State School for the feeble minded, a bleak institution where people with disabilities endure endless days of silence, tedium, and neglect. Howard is stunned by the conditions at Belchertown and the challenges of his new job, but as he gets to know his diverse, endearing, and intelligent students, he becomes consumed with a mission: to unlock their

communication skills and help them reach their full potential.

Pitting his youthful idealism and passion against the rigidity of a rule-bound administrator, Howard battles his way to small joys and victories with his students-and, along the way, learns just as much as he teaches. A stirring and spellbinding memoir from internationally renowned AAC expert Howard Shane, Unsilenced is a candid look at a pivotal era in disability history and a deeply personal account of how all human beings can flourish when we care for each other and fight for change”-- Provided by publisher.

One reviewer said- “This book will grab your attention and is 100% unputdownable. Readers will find themselves rooting, not only for Howard Shane, but also for the students in his unconventional classroom.” She rated it 5 stars out of 5.

Disability visibility: firstperson stories from the Twenty-first century

Edited by Alice Wong

One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent-but all are underrepresented in media and popular culture. Activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people…

From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond- this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.

And lastly, for children starting school or changing schools:

Facing your fear of going to a new school by Renee Biermann

Summary: What happens if you need to go to a new school? Are you nervous about meeting new people? Do you worry you might get lost? You’re not alone. In this book, explore the reasons why starting a new school can be scary and discover simple tips for facing this fear. Reassuring facts and helpful photos provide the knowledge young readers need to face their fears of starting a new school. Part of the Facing Your Fears series.

Free book scheme

https://www.ihc.org.nz/how-we-can-help/library/ free-book

As a way of providing support and advice to families and introducing you to the IHC Library, we would like to give you a free book relevant to your child’s needs. This is available to families with a child or family member with autism or an intellectual disability who is aged 0–24 years old.

If you haven’t had a free book or know someone else that this applies to, please let them know. To get a copy of a book fill out the form or get in touch with the IHC Library.

If you are interested in any of these items or would like to know what else the IHC Library have please contact your library team (Phil, Ros and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha. co.nz/

You can watch their library video at https://www. youtube.com/watch?v=AunmBYTIZTM

There are other videos showing how to register with the library, and how to search the catalogue and request items.

Contact Directory

NZDSA Committee

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

Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawke’s Bay 0800 693 724

Shelley Waters Treasurer treasurer@nzdsa.org.nz

NZDSA Staff

Zandra Vaccarino

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

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

Regional Liaison Officers

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

NZDSA Socials

Bev Smith

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

Carey-Ann Morrison Zone 4 Representative Wellington & Wairarapa 0800 693 724

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

Maia Faulkner

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

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

Gwen Matchitt Vice President

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

Averill Glew

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

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

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

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

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

Kathryn Sadgrove Northland Coordinator 0800 693 724 ksadgrove@xtra.co.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 see what our communities are up to at nz_down_syndrome

Check out the NZDSA’s website at nzdsa.org.nz

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

NZDSA Membership

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

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.

The 2024 Youth Development Camp

This exciting event will be hosted on the 22nd to 24th November 2024 at Vaughan Park and MERC. To secure your spot, please send an email to na@ nzdsa.org.nz. Spaces are limited so please reply by the 29th April 2024.

NZDSA National Committee

Vacancies

Due to recent resignations, we have vacancies in Zone 3, Zone 4, and Zone 6. If you are an NZDSA parent or whānau member and interested in serving on the National Committee, please get in touch with me at neo@nzdsa.org.nz.

Numicon Kits

We still have Numicon kits available if you are interested in loaning one for the school year. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is http://www.numicon.co.nz/

• The NZDSA has 16 kits to loan to NZDSA members.

• These kits can be used at home or school.

• The loan period is from February/March to the end of November.

• The NZDSA does require you to pay a refundable bond of $60.00.

• The NZDSA will reimburse you the $60.00 bond if the kits are returned clean and complete.

• The only cost to you is the courier and handling fee which is $30.00 and the cost of returning the kit to the NZDSA.

If you would like to borrow a kit please contact Linda te Kaat at na@nzdsa.org.nz or 0800 693 724

NZDSA National Achievement Awards

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

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

Tell us your story!

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

Thanks

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

• Lottery Grants Board

• COGS: Christchurch

• COGS: Rodney/North Shore

• COGS: Hamilton

• COGS: Auckland City

• COGS: Coastal Otago

• COGS: Manukau

• COGS: Waitakere City

• COGS Southland

• COGS Manawatū/Horowhenua

• COGS Whangārei

• Holdsworth Charitable Trust

• Eastern & Central Community Trust

• Te Whatu Ora — Health NZ

• Ministry of Social Development

• Joyce Fisher Charitable Trust

• Pub Charity

• T G Macarthy Trust

• Lion Foundation

• Southern Stars

• Lindsay Foundation

Our people

Summer, 2024.

The aquatic Recordon siblings

Joshua soaking up the atmosphere at Piha

Some summer fun with Liam Coard

Happy 7th birthday Esther!