Chat 21 - Autumn 2023

CHAT 21

ISSUE 93, Autumn 2023

ISSN 2744-4635

A journal about & for the New Zealand Down syndrome community.

Editorial – Autumn 2023

What a lot to pack in this season! Our theme for autumn is ‘Our Awesome Bodies’, which we explore in these pages in a whole heap of different ways. There’s the food to fuel, training and sport to exercise, and music to inspire our bodies. Champion Centre let us in on our bodies’ senses, and the IHC library have loads of great recommendations for books that help us get to know our bodies. There’s also an article on bodily consent – who gets to interact with our bodies and how and when we might give them permission to do so. Plus, photos throughout the edition of our members using their bodies to reach new heights, learn new skills, or model odd socks!

There are two brand new snack-sized sections in this edition that we hope you’ll enjoy – Around the World and On the Socials. These are a great place to go if you only have a minute or are in the mood for a quick read.

We take a look back on World Down Syndrome Day 2023, with its theme of ‘With Us Not For Us’, and a return for many to in-person celebrations for the first time since 2019. I was lucky enough to attend the Auckland Big Picnic, and with the sun shining and many new and familiar faces, there was a real sense of celebration, not only of the community, but of being able to celebrate together once again.

Speaking of being together, our 2023 Professional Development Hui was held in Auckland at the outset of autumn, bringing together over two dozen staff, Committee members, and regional volunteers to spend two days learning from each other and a host of wonderful experts. It was such a joy to be together with people I’ve worked with, in some cases for many years without actually ever meeting in person and meeting some new colleagues as well. You can read a brief summary within these pages as well.

This is also a special edition because it celebrates the 10th anniversary of STRIVE, the NZDSA’s self-advocacy group. We mark this with a history of the group, including testimonials from members past and present, and a look into one of the STRIVE team’s latest milestones, being quite possibly the world’s first academic co-authors with Down syndrome. There are all your favourites as well of course, Down Write Brilliant, Our People, and updates from UpsideDowns, our National Executive Officer, and our National President. So, escape those autumnal breezes for a bit and treat your body to a cup of tea and a peruse of the latest and greatest CHAT 21!

Ka kite, Sarah Paterson-Hamlin

Catching up with the UpsideDowns crew at the ADSA Big Picnic, WDSD 2023

All Around the World

Northern Ireland

Irish actor, James Martin, joined his fellow cast and crew of the film “An Irish Goodbye” onstage to accept the Oscar for Best Live Action Short. The short film is about two brothers who come together following their mother’s death. The date of this year’s prestigious event, 13 March, also happened to be James’ birthday, and so the emerging star had a theatre full of the world’s most famous faces sing him happy birthday in addition to becoming an Oscar winner.

United States of America

Researchers at the University of Arizona have recently announced a breakthrough in the development of a drug currently known as DYR533. It’s hoped that this drug will be able to successfully block the development or advancement of Alzheimer’s disease in patients with Down syndrome.

Kazakhstan

A new community centre specifically for people with Down syndrome and their families has been established in Almaty, Kazakhstan. Guido Trezzani, the National Director of Caritas which is the umbrella organisation who administer the centre, said the centre “allows us to spread and strengthen, on a cultural and social level, the idea and practice of inclusiveness in Kazakhstan.”

On the Socials

Luka’s first paid blog

Many of you will be aware of NZDSA member Luka Willems and his work as an athlete and social media influencer. The amazing organisation, All is for All, also recognise Luka’s talents, and feature his writing on their blog, Amplify. Check out Luka and loads of other great content at https://allisforall.com/ amplify

Mosaic Mum

Ashley is a TikTok creator and owner of ‘Down with the Doyle’s’ which creates beautiful Down syndrome-positive items. In December 2022, she announced she was expecting a third biological child with Down syndrome with a characteristically humorous TikTok. Following this third pre-natal diagnosis, she received testing and confirmed that she did in fact have mosaic Down syndrome herself. Follow her on her handle @ashleyzambelli for funny, relevant, and impactful content on mosaic Down syndrome as well as parenting 3 kids with T21.

Ridiculous Excuses

If you’ve seen this on the socials around World Down Syndrome Day, you probably still have that catchy tune in your head. CoorDown, the Italian non-profit behind other viral campaigns such as ‘The Hiring Chain’, have gathered stories from around the world, including Aotearoa, for their World Down Syndrome Day 2023 campaign: #RidiculousExcusesNotToBeInclusive. Simply search the hashtag on any social media to check out a range of videos.

Fuelling our awesome bodies: Top 5 Autumn Purées

Difficulty swallowing and eating certain types of solid foods often comes with the Down syndrome territory. A deepseated passion for tomato sauce might be a familiar example! Even if this isn’t a major factor, every little one has to work their way up from milk to solids, and a vital stepping-stone on this messy path is the humble purée. When it comes to a different timeline for food milestones, a 3-year-old set of taste buds might not respond kindly to a purée designed for an infant, and even for older children and adults a more sophisticated purée might be able to tip the nutritional balance in a positive direction. The better we fuel our bodies, the more awesome things they can do, so to celebrate this season’s theme, here are our top 5 purées that take advantage of the autumnal harvests, and have a little something more to offer than the usual ranges designed only for infants. The instructions for all of them are the same and exactly what you’d expect –blitz them up together using whatever method you’d like, then refrigerate, pack, and enjoy whenever and wherever!

Fancy breakfast

This sneaky option feels and tastes like a dessert but it’s packed with protein. This also makes a nutritious and sustaining breakfast for those whose appetites take a while to get going in the morning.

Ingredients:

125g ricotta

2 tbsp plain yoghurt

1 raw pear cut into pieces, or 3 pieces of tinned pear

Vanilla essence and/or cinnamon to taste

Autumn root vegetables

I can think of nothing more autumnal than the steam rising from pots of boiling root vegetables! For purées, these will need to be boiled a bit longer than usual, and for extra flavour you can give them a quick roast as well. Any of these ingredients can be substituted for yours or your child’s preferences and what’s available. Either way, this is an excellent way to get several of your five-a-day serves at once.

Ingredients:

2 turnips

2 carrots

1 parsnip

1 kumara

3 tablespoons unsalted butter

Salt and pepper to taste

Sunday roast

If you think the traditional Sunday roast has to be fully solid, then think again! Include the whole whānau with this delicious blend that ticks so many nutritional boxes. You can easily make this recipe vegetarian by using chicken alternatives such as those in the plan*t range.

Ingredients:

250g shredded chicken

1 cup chickpeas

1 tsp minced garlic

2 tbsp finely chopped rosemary

1 tsp apple cider vinegar

2-3 tbsp plain yoghurt

2 tbsp sunflower seeds

Green goodness

If getting iron or vitamin K into a diet is your challenge, then this is a great option. Silverbeet explodes in my garden during autumn and is readily available in supermarkets around Aotearoa. Adjust the dates:greens ratio depending on the age and tastes of your child – for example, under 2s might struggle with the bitterness of the silverbeet, so add in a few extra dates.

Ingredients:

1 bunch silverbeet

1 bunch baby spinach leaves

1/3 ripe avocado

3 pitted dates

1 cup water

Dessert time!

This dessert recipe reminds me of Zimbabwe where any excuse to add peanut butter to a dish can and will be used. There are some good reasons for this! Peanut butter includes so many important nutrients like magnesium, iron, vitamin E, and vitamin B6. It’s also high in calories compared to the effort taken to eat, making it a great choice for those who aren’t ready for a totally solid diet. The bananas add a 5-a-day serving plus potassium, fibre, and carbohydrates, and the chocolate chips make it irresistible.

Ingredients:

2 ripe bananas

¼ cup peanut butter

Dark chocolate chips (melted if necessary)

Dash of lemon juice (optional)

Swinging Big for World Down Syndrome Day

By Adrian Hatwell, Fundraising and Digital Media Manager at UpsideDowns Education Trust

UpsideDowns was thrilled when one of our member whānau from the Hawke’s Bay reached out with the idea to host a charity golf day to celebrate this year’s World Down Syndrome Day. Mat and Lucinda Perry, who run Pinpoint Premium Golfing Experiences, recently joined UpsideDowns to support their beautiful one-year-old, Freddie, on his communication journey. Through their expertise and our organisation’s love for Down syndrome puns, Tee 21 was born. The weather forecast for Tuesday, March 21 predicted rain — a sore point for the flood-stricken region — but as lunch and registration rolled around at midday, golfers and their families were treated to beautifully clear skies above Hastings Golf Club. The day saw more than 100 golfers competing in an Ambrose format golfing tournament (a style that allows golfers of differing abilities to mix and play together with equal enjoyment).

As the teams happily made their way around the course, they had beverages delivered by gracious hosts in golf carts and could stop for refreshments at a bar set up in the middle of the course, staffed by our very own CEO (and dishwasher), Victoria Smith. Tee 21 wasn’t just for competitors, there was

plenty for friends and family to enjoy on the day. Two bouncy castles were erected, a small one for the young’uns and a larger for the more experienced bouncers, and Golf New Zealand sent a team of young enthusiasts to help teach fun golf skills to the kids. A classic sausage sizzle ensured everyone was adequately fuelled through the afternoon.

It was a real community affair, with a number of UpsideDowns supporters working hard to promote numerous causes. One hole on the course was dedicated to raising funds for cyclone relief, and UpsideDowns supporters Joe Payton and son Otis were collecting donations for their upcoming Hawke's Bay Marathon run in support of the Hawke's Bay Rescue Helicopter Trust. In between playing holes with his brother Reuben, competitive swimmer Jesse Williams was also raising funds to compete in this year's Special Olympic Games in Germany.

Once the last ball was sunk, it was time to retire to the clubhouse for the prize-giving, dinner, and a live auction. Platters of hot food (chicken and chips for the kids, always a winner) helped energise the crowd for an incredibly generous round of bidding. The auction saw items like memorabilia

signed by the Black Caps and Lydia Ko, luxury dining experiences, custom sports equipment, and a rejuvenating yoga retreat go under the hammer. The night’s most hotly sought item was a weekend away at the exclusive Te Aria Links golf resort north of Auckland.

Tee 21 was a fabulous success for UpsideDowns, helping support our work funding life-changing speech and language therapy for Aotearoa’s children and young people with Down syndrome. But more than that, it was a beautiful opportunity for a community to come together after years of separation thanks to the pandemic, followed by the blow of recent flooding. The smiling faces and gregarious energy of the event made it clear just how important these opportunities for social connection are.

It certainly didn’t hurt to have gorgeous young Freddie at the centre of this caring community, reminding everyone why we take the big swings on events like this. UpsideDowns is a charitable organisation providing funding for speech and language therapy for Kiwi kids with Down syndrome – visit www.upsidedowns.co.nz for more information.

NZDSA Hui – A speedy summary

By Sarah Paterson-Hamlin

Zoom is great, but there’s nothing like the thrill of meeting a couple of dozen people in real life who you’ve only ever known as tiny faces in boxes. NZDSA staff and regional representatives met in Auckland for a two-day hui. The programme was varied and beneficial to all attendees and their communities, and punctuated by no fewer than nine introduction rounds which will be very helpful for me at least going forward (names not being my forte!) There were so many great areas discussed that I can’t possibly leave any out, so here is a one-sentence summary of each item on the agenda.

Day One

Welcome and Whakawhanaungatanga Lots of laughs and consensus that everyone’s boss is amazing – same consensus unclear on Mums and husbands (in jest!).

Regional Presentation: Hawke’s Bay

Lots of great social events in the Hawke’s Bay – seeking younger family members to inject extra enthusiasm.

Regional Presentation: Bay of Plenty

Statistics are great, for example, Bay of Plenty has the highest relative child population in Aotearoa.

Regional Presentation: Canterbury

Working well collaboratively with likeminded organisations in the area.

Privacy with Joseph Clapp from NZ Business Tools

Data is fantastic but it’s important to be ethical when collecting and storing it –ensure data collected is necessary and that you have consent to record it.

Database development with Abel Haslett from CSI Systems Ltd.

Working towards a national database of NZDSA members that works for the regions, our national staff and volunteers, and our members, and factors in ethics, privacy, and security.

Education enhances life opportunities –Networks of Expertise

“Supporting teaching practice to build capability for educators, parents, and students with Down syndrome and learning disability where an increased understanding is an asset.” (Dr Maree Kirk)

Empowering Voices with UpsideDowns Funding is available for speech and language therapy for all Kiwi kids with Down syndrome through UpsideDowns, improving outcomes in physical health, mental health, independent living, and future employment.

Website brainstorm

Having a look at what works and what doesn’t work about the current NZDSA website – sticky notes and fun stationery!

Regional Presentation: Auckland

Over 500 members across Auckland, but not growing as fast as the hospital birth numbers for Auckland would indicate – encouraging new families to become members is the next big challenge for the region.

Dinner

Delicious, with excellent company thrown in.

Day Two Opening session

Lots of energy despite the long day yesterday to discuss some of the challenges of the last three years and the needs our communities face now. The impact of support parents with Karen Miles and Helen Smith from Parent to Parent

Beautiful, calmly delivered, aspirational session to help us all become better listeners and supporters in our different roles (also chocolate).

Reflect and replenish with Jill Secker from Emerge Supervision

“Meeting our own needs first isn’t selfish – it’s the key to sustainability” (Jill Secker)

That was a whistle-stop tour of what was an incredibly engaging and valuable occasion. It was also fun and energising to be together, and showed how lucky we are to work within a community full of so many passionate, welcoming, and thoughtful advocates.

Thank you to Zandra, Linda, and everyone else involved for a fantastic hui!

President’s Pen

By Kim Porthouse

I have recently come back from the NZDSA Regional Training Event, and it is the first time we have had a chance to connect with others from around the country on a face-to-face basis since 2021. We brought together both National Committee members and representatives from around the regions. I found it a really motivating experience and was reminded of why I volunteer for the NZDSA. It was so good to be amongst people who share the same understanding of the challenges we as parents face, but who also share the experience of the joys our children bring and the love we have for them. It was also a reminder that there are some truly amazing people out there who all want to contribute to making the journey through life smoother for both our children and other parents alike. I would like to take this opportunity to thank everyone who took time out of their busy lives and gave their time and energy to the event, each of you are awesome! I and the committee appreciate all the feedback you gave and all the ideas you shared. There are certainly some common areas of need that will inform the work the NZDSA does to support the regions. And I hope you all took ideas and energy back home too.

I know there are plenty of parents out there who feel time-poor and at times overwhelmed. One of the things I was reminded of over the weekend was the importance of connecting with others whom we share a lived experience. I would like to encourage each of you to make a little time to connect with other parents, or other siblings, and to take time to help your child or young adult to connect with their peers, because connection feeds the soul and lessens that sense of isolation and of being overwhelmed. I encourage you

to meet face-to-face, even if it’s just over coffee or to go to a local Down syndrome Association event and rediscover the joy of connection.

The NZDSA has received some funding to go to a few regions such as Northland, the East Coast of the North Island, The Northwest/West of the South Island, Auckland and Otago/Southland and will be running some ‘Kōrero & Kai’ events where there will be a chance to connect with others and services in these areas after the ravages and isolation of Covid-19. There’s also an opportunity to learn a bit about incorporating the principles of Enabling Good Lives into your young person’s goals. Each event will be tailored, in consultation with representatives from these regions to the needs of the region. If you are in one of these areas keep an eye on the NZDSA Enews and Facebook for these events and register to come along. The more that come the better the event will be.

For me and Brendon, I am really taking the need to connect and doing something very personalised with a couple of other local mums near me. We have decided to have a little social outing for us and our children for a couple of hours every 3rd or 4th weekend, doing simple things like visiting a local nature reserve, taking a tram or train ride, a trip to the beach, bowling, mini-golf, or even a café outing. Then every 3 or 4 months we are also having a mum’s night, taking in a movie or show or going out for dinner and just having a good old natter. It’s early days but both mums and our young people are really enjoying these get-togethers I’d not realised how much this sort of thing had gone by the wayside since Covid – it’s been real soul food! Maybe it’s something you can do too.

Down Write Brilliant –With me not for me

By Hamish Gilbert

What ‘with us not for us’ mean to me in general

‘With us not for us’ means people believing I am capable of learning how to do something, and therefore showing me how, so I can do it myself next time. If you never show me, but do it for me, I will never learn.

So don't assume I can’t do something, give me an opportunity to show you what I can do.

How receiving the Duke of Edinburgh award was a good example of ‘with us not for us’

Going up to Auckland to receive my Duke of Edinburgh Gold Award was a good example of ‘with us, not for us’. I was honoured to be standing on stage with everyone else, collecting my award from the Governor General and Sarah Hillary. I was so proud of myself receiving the gold award, just like everyone else. However, it would have been nice to do the Duke of Edinburgh award as part of the school group. It was a tough journey undertaking the three awards largely on my own, isolated from my mainstream peers.

I was able to do the practice journey with my peers, as part of my school science class, but then the teacher decided not to do the award with my class anymore and I was not allowed to go on the expedition that the school award group were doing, like my brother did, and that was not inclusion. I then had to do all the other awards by myself!

What ‘with us not for us’ means at school

For me it meant working with my peers, not sitting in the back of the classroom having a teacher aide doing the work for me and velcroed to me all day. My mum told me she used to tell the school she would rather see one sentence in my book written by me, than five written by the teacher aide.

Another school example is I wanted to make a clock, just like the rest of my technology class, but I got told to just file a piece of plastic. Also, the teacher aide making a hamburger for me in food tech was not ‘with us not for us’, either.

What ‘with us not for us’ means in the workplace?

I don't like support workers ‘shadowing me’ during my transition to work. People with Down syndrome need to be shown how to do tasks by other company workers, just like everybody else, so that we can feel part of the team.

WDSD23

Northland Celebrates WDSD23

On the 19th of March our group had an open to all ages Play Gym session to celebrate WDSD “With us not for us”. It was all about “Having a go” and trying new things while having fun. Families travelled from mid north to join in our fun family day. After the Play gym session, we all headed upstairs for an inside picnic (yummy pizzas), spot prizes and a walk around the Athletics track to mark the occasion. We were supported by local business Dominos pizzas, Pak’nSave and WAGS. Alongside this we did a “Lots of Socks” colouring competition and raffle on our NDSSGT FB page. The smiles on faces says it all!

#worlddownsyndromeday #familiesgettingtogether

WDSD23 with the CDSA

CDSA recently held a fun-filled family camp to celebrate World Down Syndrome Day, and we were delighted so many of our CDSA families joined us; in fact, camp was sold out!

The setting was stunning at the beautiful YMCA Wainui Park on Canterbury’s Banks Peninsula. There were lots of cool tracks to explore through bush and across streams; the birdlife was beautiful, especially their songs; the activities were fun-filled and exciting, and don’t get us started on the fun had around the campfire singing crazy songs and toasting marshmallows!

Liam meets the Prime Minister

Chris Hipkins is a past student of Waterloo school. His visit tied in perfectly with WDSD!! Liam was raced around to say hello and soon embraced our PM with a lovely hug. He has gone a bit viral (4,500 likes!!!) on Chris's FB, what a way to spread the word about our amazing community.

Wellington celebrated WDSD with a handful of families over the hill at Masterton’s Queen Elizabeth Park. There were miniature steam train rides, park play and picnic-ing fun. And a delicious glutenfree celebration brownie!!

Jessica Jelley takes the wheel

Two weeks ago Jessica got off the school bus and looked me straight in the eye (never happens) and said, dad I'm 16 next year and I want to get my driver's licence. I said ok thinking she wasn't that serious. We got home she changed and said I'm ready for my lesson. So out we went onto the farm track. She went really well apart from having trouble finding centre for the steering after turning a corner. I fixed this by putting a

bit of tape around the top of the steering wheel so she knew when it's at the top the wheels will be straight. We have since brought a road code which she reads when she has spare time and I quiz her when we are driving. It's quite interesting what she takes in and what she doesn’t but we have 2 years and she wants it so I have no doubt she will achieve it.

WITH us, not FOR us.

Football with the pros

By Jody (Walter Wilson Kilpatrick’s mum)

A summer highlight for us was a invitation to join Stanley’s friend Axel and his big brother Myer for some football. Myer Bevan has played for the All Whites and is a striker for Cavalry FC in Canada, but he started out as a five-year-old at our local club, Western Springs. I kept Walter off the field because he didn’t have the right shoes and, based on past experiences, I was concerned he’d pick up

the ball and refuse to give it up. He was so disappointed that Myer gave Walter his own session to finish. Walter was a star –running, dribbling, kicking (and didn’t pick the ball up once!) and Myer was the best football coach – chasing and cheering Walter to several goals. Here they are in Walter’s favourite Hulk pose.

Jasper in India

In January, Jasper went on a one-month family holiday to India. He visited New Delhi, Agra with the Taj Mahal and four cities in Rajasthan. He was traveling by using public transport and very much liked the idea of “taxi” (c): a rickshaw or a car. Jasper very quickly learnt the word “noisy” and tried to say “hello” to as many people as he could.

Teaching Bodily Consent for young people with Down syndrome

Sarah Paterson-Hamlin, adapted from content supplied by Awhi Ngā Mātua and Down Syndrome Education International. Part of celebrating and looking after our awesome bodies is having boundaries around who gets to see or touch them and for what reasons. Disabled people in Aotearoa are more likely than nondisabled people to experience unwanted physical contact, and this is even more likely if a person is non-verbal. That’s one reason why it’s important to reinforce bodily autonomy and safety messages in a way that’s fun and appropriate for a person’s age and stage of understanding. Regular and reinforced messages around bodily consent can begin from a very young age and can foster self-respect and love for our awesome bodies as well as keeping them safe. Here are some suggestions you can adapt for your whānau.

Role-modelling bodily consent

As we become adults, we develop more fine-tuned sensitivity to other people’s body language and unspoken messages. For a variety of reasons, some of us become hyper-sensitive to these signals while others struggle to interpret them. This is why adults are generally able to hug each other spontaneously, for example, without explicitly asking permission; consent or a lack of it is interpreted nonverbally through tone, past experiences, or body language. This is an acquired skill however, which is why many caregivers wouldn’t want another adult to simply hug or demand a hug from our children without asking permission first. Getting into a habit of asking permission before hugging, high-fiving, fist-bumping etc. in front of kids can be a relatively simple way to role-model bodily consent.

Related to this, a lot of people with Down syndrome are particularly excellent at hugs, and when we’ve had a hard day or just need a bit of love, it’s completely valid to want some of those life-affirming cuddles! It’s just important to ask first –“Is it ok if Mummy hugs you?” or “Can Daddy have a hug?” rather than “I need a hug” or “Come here and give me a hug”. If their response is negative, then saying “Ok” or “That’s fine, maybe later” is an easy way to role model bodily autonomy and communicate the message that you decide what happens to your body.

Using the standard terms

They’ve gone by many euphemisms across space and time; dangly bits, hoo-ha, thingymabob, and a vast array of others from the poetic to the disturbing. However, when it comes to encouraging knowledge and respect for bodies, the simple correct terms from the start are the best way to go – words like penis, vagina, vulva, and testicles. This encourages a healthy relationship with our own bodies, as well as making difficult conversations easier when we aren’t avoiding the terms themselves. For those who will face challenges in verbal communication, the simpler and more consistent the terminology, the more secure the understanding will be. We know that children with Down syndrome have extensive vocabularies in terms of their receptive language, even if verbal language is limited or not yet present. The same can be said of pre-verbal toddlers who are typically developing, so just because a child isn’t using those words themselves yet, it does not lessen the impact and importance of using them ourselves.

Other people get to decide what happens to their bodies too

The flipside of teaching bodily autonomy to our young people is getting across that the same is true of everyone else. If someone doesn’t want to have their hand held, be tickled, hugged, or highfived, then that’s up to them. If any fans of Kiri and Lou out there (one of my favourite local kids’ TV shows), they have a wonderful song called ‘My Body Belongs to Me’ – a catchy way to remember this message!

Safety over fear

When having these conversations, emphasise the importance of safety, independence, and respect rather than scary things that might happen. This way it becomes part of a positive experience of getting to know and love our own bodies rather than something to feel worried or ashamed about. This way, rangatahi feel more comfortable to come to their adults when something uncomfortable or uncertain takes place. For more information, check out this great chat between Awhi Ngā Mātua and our friend Ros from the IHC Library: https://www.facebook.com/ watch/?v=3127735620781518

Our awesome sensing bodies

By Lauren Porter, Clinical Director at Champion Centre

Our brains and bodies are working together – day and night – to detect, process and respond to information in our environment. Some of this processing is called sensory processing. We are all familiar with many of our sensory systems; taste, smell, touch, vision, and hearing are the common “five senses” that most adults can quickly name. Each cell in our body has a role to play in sensing information. Some of that information comes from outside ourselves; some of that information comes from within. How we respond to that information is a result of the interaction between what’s happening within and what is happening outside and how well those two components fit together. In other words, how we integrate, make sense of and react to all the sensory information is about who we are, what is happening in that moment, and how well our environment is matched to our needs. For some of us, what feels good is the wind in our hair and loud music on the car stereo. For others, it’s a quiet room with a soft chair and a good book. Some of us love rollercoasters; others of us love walks by the beach. The same person can also feel differently in different settings,

depending on current life stressors, how well they’ve slept and what sort of meal they’ve eaten. Most of us understand this innately and can explain our reactions both to ourselves and to others. Children with Down syndrome demonstrate more atypical sensory processing systems than typically developing peers. Their sensory systems face greater challenges and are often not as well coordinated or understood. Because children with Down syndrome may have challenges with things like hearing, motor planning, balance, muscle tone, and language development, their bodies receive different sensory cues than a child who does not have a similar challenge. This can make aspects of daily life, education, and interacting with others tricky at times.

Parents of children with Down syndrome may report experiences such as: my child puts her fingers in her mouth a lot; my child does not like transitions and becomes upset with changes in routine; my child likes to lick things and is a picky eater; my child enjoys a lot of movement and things like swinging make him happy; my child takes a long time to calm down for sleep; my child hates loud noises;

my child grinds her teeth; my child finds having his hair brushed or fingernails trimmed distressing. Some of these things may be familiar to you, and there may be many others that are not on this list. What do all these experiences have in common? They are often linked to a child’s sensory systems and processing. When we understand that our sensory systems help us navigate the world, it becomes important to be curious about our senses, the information they provide us, and how we can better support ourselves – or our children – to feel at home in their bodies, in their relationships, and across their lives. Knowing what helps soothe a child when they feel discomfort – be that from sound or touch, environment or internal cue – and what helps give a child energy when they feel low is like having a new set of keys to previously unlocked doors. Sensory systems are not “good” or “bad”. They are, instead, complex, unique, and changing systems of intelligence, feedback, and response. For our children with Down syndrome, it can be helpful for us to pay special attention to their sensory responses for these are windows into their world. Understanding that bodies have

sensory systems, and that some systems are more complex or nuanced than others, can also help us join in another’s world whilst also freeing us of the belief that something is “wrong.” Instead, we can walk together with our children and grow in our understanding of what is meaningful and important to their bodies, and their lives.

References:

Bruni, M., Cameron, D., Dua, S., & Noy, S. (2010). Reported sensory processing of children with Down syndrome. Physical & Occupational Therapy in Pediatrics, 30(4), 280-293.

Isralowitz, E. B., Sideris, J., Duker, L. I. S., Baranek, G. T., & Cermak, S. A. (2023). Comparing sensory processing in children with Down syndrome to a mental age matched sample of children with autism, other developmental disabilities, and typically developing children. Research in Developmental Disabilities, 134, 104421. Licciardi, L. (2020, September). A critical review of the sensory profile–second edition (sp-2): implications for clinical and research use. In Virtual OT Exchange 2020: Learn, Practice, Enrich.

Music Therapy with Joshua & Sam

By Sam Scott, Raukatauri

“Please take a seat”, Joshua says, as he gestures towards the chair situated amongst the vast array of musical instruments. “I will sing the hello song today!”

I happily sit down and wait patiently to see what Joshua has in store. For the next two minutes Josh improvises an exciting song with charisma and without inhibition, announcing not only his presence in the room but the beginning of music therapy. From this moment on there is nothing but creativity and possibility all around us. Music therapy is a clinical practice that recognises and celebrates a person’s individuality and worth. Musical activities, games, movement and song are used to provide a motivational, engaging space that aims to promote creative selfexpression and develop emotional and physical growth. When I heard that the theme for this term’s CHAT21 article was Our Amazing Bodies, I knew that I had to write about the sessions with Joshua. When sessions begin it is fair to say that neither myself nor Joshua know what is about to happen. I play honky-tonk piano and sing “which animal are we today?” as Joshua, a ball of energy and excitement, impersonates an elephant before morphing into a fish and swimming towards me. He jumps onto the piano and repeats the lyrics as I evolve into a lion and then a horse, galloping across the room. Joshua opts for a change of pace and hides, which in turn prompts me to pick up

the ukulele and sing “where is Joshua” (to the melody of Frere Jacques) in a musical game of hide and seek. The activities continue at this pace, from very serious games of musical statues to very unserious re-enactments of 5 cheeky monkeys. Improvised songs about feelings are introduced using coloured bells to explore our emotions before ending with a goodbye song to bookmark the end of the session.

I take some time to ask Joshua about his feelings towards music therapy and he tells me, “I love music and I love it when we pretend the chair is impossible to sit on! The piano is my favourite instrument.” I tell him that these are some of my favourite moments, too.

At this stage we have run out of time and unfortunately the session must come to an end. We take a few deep breaths to help us calm down before Joshua returns to class and I set the room up for my next session.

“Can we stay?” Joshua asks, and I reassure him that next week we can do it all again. I happily admit to myself that I’m looking forward to the session next week already, potentially even more than Joshua.

Sam Scott is a music therapist employed by the Raukatauri Music Therapy Trust. When not working at Raukatauri Music Therapy Centre, he works in various schools and care homes across Auckland.

Training our Awesome Bodies

By Matt Sinclair, Personal Trainer (PT)

First off, let me introduce myself and Georgia. My name is Matt Sinclair, and I’m a Personal Trainer (PT) from Palmerston North. I’ve been training at the gym for many years now and decided two years ago to make it my profession. Over my time as a trainer, I’ve coached a variety of different clients, one of whom I was privileged to meet around a year ago named Georgia Garrett. Georgia is a 30-year-old woman with Down syndrome. Georgia came to me with the goal of overall health and weight loss, and I’m happy to say we have achieved a lot towards this goal and are continuing to do this and more every session. Since coaching Georgia, I’ve learned many things when it comes to coaching a client with Down syndrome. Firstly, there is the physical side of training. Training at the gym is very beneficial for individuals with Down syndrome, as it helps to develop strength, flexibility, and balance and reduces the likelihood of injury both

inside and outside the gym. Another huge benefit of training for individuals with Down syndrome is the mental impact it has. It can boost their confidence and selfesteem greatly!

As a trainer, when approached by a client with Down syndrome, there are many important aspects you need to cover when training. Firstly, understanding that the gym can be quite daunting and scary is a must. I make sure that whenever Georgia shows up for a session, I’m waiting at the front desk with a big smile to create a supportive environment for her. I then make sure this support and positivity continue throughout the entire session until after she leaves the gym. After a whole year of training together, a session hasn’t gone by where Georgia and I haven’t shared smiles and laughs throughout the whole session. When coaching Georgia, I also make sure to always congratulate her when she achieves milestones, regardless of how small or large they are.

As well as the importance of creating a safe, supportive, and positive environment, there are also many aspects of training that a coach will need to take into account when coaching a client with Down syndrome. When training with Georgia, I made sure to start with low resistance while I taught her the proper form and technique when performing certain exercises. This is to ensure that Georgia has a strong foundation of knowledge when approaching certain exercises, thus reducing the risk of injury and ensuring the exercise is as effective as possible. Georgia has proven that she is ready to increase the resistance and intensity of each session. Not only are we now training with higher resistance, but we are also performing more free-weight exercises. Alongside resistance training, I also get Georgia to perform certain flexibility and balance exercises. These prove beneficial for clients with Down syndrome, as stretching allows us to identify and correct

any muscle imbalances that may have occurred over time, and balance training can help to develop coordination, thus reducing the risk of falls, etc.

Overall, since coaching Georgia, I’ve learned that personal training is an amazing way for individuals with Down syndrome to improve their health, both physical and mental. As a coach, being knowledgeable, compassionate, patient, and supportive is a must in every session.

It is amazing to see the strides Georgia has taken since joining me in the gym to be a healthier, more confident version of herself.

To anyone who is interested in starting their fitness journey, get in touch for a free consultation and session!! Email me at: mattspt@outlook.com. Check out what Georgia and my other clients are getting up to on my Instagram too - @mattspt

STRIVE – 10 Year Anniversary

By Zandra Vaccarino

First Self-Advocacy workshop held in Christchurch

When I attended the first NZDSA National Forum in 2004, I was very surprised that people with Down syndrome were not actively involved in the organisation, nor was there a mechanism by which their voices could be included. When I was given the responsibility to organise the Forum in 2005, I approached the NZDSA National Committee to ask whether we could include a stream for people with Down syndrome, which was supported. This set in motion the establishment of STRIVE. The first LINK workshop was held in 2005 in Nelson and facilitated by Cindy Johns, who was a member of the IHC advocacy team and provided support to People First. We continued to host LINK workshops at the Forums and the self-advocates kept asking for further opportunities on self-advocacy training. So, in 2009, we hosted the first self-advocacy workshop in Christchurch, facilitated by Carolyn Stobbs and Pip O’Connell.

At that time, I was completing my Masters in applied Social Work, and a key theme I explored for my research dissertation was the self-advocacy movement and the establishment of advisory groups within a range of settings. The Voice At The Table Advocacy committee (VATTA), supported by the Canadian Down Syndrome Society, was a group that I was particularly interested in as I thought it had real relevance to the NZDSA. I was therefore delighted when the World Down Syndrome Congress was hosted in Canada shortly afterwards. Attending the conference provided me with the opportunity to arrange several meetings with VATTA and the team supporting VATTA so that I could learn more about the advisory group and how to establish something similar here in Aotearoa New Zealand. Neville Strong had just become the President of the NZDSA so he attended the meetings with me and was very supportive of these aspirations. It took a few more years of training - with some initial support from IHC and funding from Te Pou - to be able to establish the STRIVE group in 2012 at the NZDSA National Forum.

Since then, STRIVE has flourished and achieved many amazing milestones, starting with naming the group, and creating a mission statement and values. They also decided that workshops should be called Funshops because they wanted to have fun while they learnt. But don’t be fooled by the name Funshop, as STRIVE

members are extremely productive at the Funshops and often have long days starting at about 8.30am and still working after dinner.

Some of the original team members of STRIVE, Edward Borkin, Alex Snedden, Sarah Jones, Alexander Hewitt, Jessica Bergerson, Erin Smith, and Andrew Oswin STRIVE members who have served for 10 years: Alexander Hewitt, Caroline Quick, Edward Borkin, Erin Smith, Andrew Oswin, and Duncan Armstrong

STRIVE has represented the NZDSA at national and International stakeholder meetings, presented at international conferences, consulted with a range of representatives from different Ministries, completed submissions, and participated in research. STRIVE has helped create awareness by helping to draft scripts and appear on videos to mark World Down Syndrome Day. They have presented at a number of community events and created a presentation for education workshops. The have created declarations on key issues and have established themselves as a group that policy makers should consult on key issues impacting on people with Down syndrome.

STRIVE has also been instrumental in creating a proposal to establish STEP-UP, which they will share in another edition of CHAT 21.

Comments from others

Averill Glew is a member of the NZDSA committee and is responsible for supporting STRIVE and attends all the STRIVE Funshops. Averill says that she first met the STRIVE members at the Forum in 2012 and she is amazed by the collective growth of the STRIVE members. She says STRIVE members continue to develop their strong advocacy voice and work on key pieces of work. She recognises how much each member has matured, the depth and breadth of knowledge they have gained, and their passion to advocate for others. Averill believes that they are all incredible advocates for people with Down syndrome.

Some of the STRIVE members share their thoughts about STRIVE:

Andrew Oswin

Hi, I’m Andrew, a former STRIVE member, a 33-year-old from Christchurch. I have been part of a self-advocacy, advisory, leadership, governance, and research team for 10 years. STRIVE stands for 'speaking up to be heard, working as a team, being treated equally with respect, feeling included, valued as an individual, and empowered to have the ability and confidence to make decisions for yourself. As a teenager, I already developed these skills at secondary school which helped me to advocate for myself, and in what I am doing now I am giving back to the disability community. When I first started getting involved all those years ago, I was able to travel independently, look after myself, to work alongside my fellow peers

and support buddies, participate in group work, growing as a person, presenting PowerPoint presentations, to represent STRIVE as the New Zealand representative at the Disability Consumer Consortium Services, and also for the Down Syndrome International with a very good working relationship with Robin Gibson. These are my highlights and what I have enjoyed very much.

I enjoyed meeting Sir Robert Martin when he came to talk about his experiences growing up in an institution and his involvement with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). I learned a lot about him and what he has done working in the disability sector. He is a great advocate and leader for the equal freedom of disabled people. I also have enjoyed working with Scott and Jerome

from United Nations Youth who worked with us on three declarations on education, employment and health.

I would like to thank everyone who has been a STRIVE member who have made me feel welcomed, all of the support buddies we have had and also a special thank you goes out to Zandra Vaccarino for her services to the New Zealand Down Syndrome Association for those amazing Funshops you have organised!

Edward Borkin

I have been to Christchurch with STRIVE and have done a lot of workshops.

I really enjoyed the STRIVE Zoom call for World Down Syndrome Day! It was very interesting to hear people's stories.

I have also taken part in the buddy walks and often did presentations for "Success In Schools" to help teachers better understand people with disabilities.  I was one of the first members of STRIVE. It means

Speaking up to be heard.

Teamwork

Respect.

Inclusion

Value Individuality and Empowerment.

It is a self-advocacy group which speaks up for others with Down syndrome so they are respected, and have the same opportunities as others and have better lives.

I like the saying for World Down Syndrome Day 2023: “With us not for us”.

I have met many people and made good friends and been to many different places in NZ. I also attended a Victorian Advocacy League for Individuals with Disability (VALID) conference in Melbourne.

I did not like the zoom meetings during Covid but enjoy the Funshops.

Duncan Armstrong

I have been a member of STRIVE for 10 years.  At STRIVE we have had great speakers like Brian Coffey from ODI, Paula Tesoriero from Whaikaha, and Paul Gibson from Human Rights Commission. I have learnt self-advocacy skills which I am using to help my performing arts work and

career.  I love catching up with my friends at STRIVE and finding out what they have been doing.  I also love travelling to Auckland and Christchurch for STRIVE meetings.  And huge thanks to Zandra for being a wonderful National Executive Officer helping us to self-advocate and have fun!

Erin Smith

When I was asked if I wanted to join STRIVE, I wasn't sure what it was about. I understood it was about learning to be stronger ourselves and support other young people with Down Syndrome from all Communities.

At our first meeting we decided on the name STRIVE which is:

Speak up to be heard,  Teamwork Respect

Inclusion,  Value, Individuality Empowerment.

We have worked on many workshops and have had many guest speakers from United Nation CRPD and MPs; I enjoyed getting to know my STRIVE team members and making new friends. I have become a more confident speaker, even on Zoom.

How to become a STRIVE member

If you are interested in becoming a STRIVE member, then the first step is to attend a Youth Development Camp and then a selfadvocacy workshop. You can also attend the STRIVE Afternoon Tea Club sessions which we host approximately every six weeks on Zoom. These sessions are open to people with Down syndrome who are 18+.

When we have a vacancy on STRIVE, we will invite people who have attended a Youth Development Camp and selfadvocacy workshops to apply. At the moment, we have no spaces available on STRIVE, but keep an eye out for announcements!

STRIVE researchers collaborate in academic project

“With us, not for us” At the beginning of 2018, STRIVE, the New Zealand Down Syndrome Association’s selfadvocacy leadership and advisory group, were interested in starting a new advocacy project and finding out more about how to conduct research. Working with Franco Vaccarino, a researcher at Massey University, they developed a series of workshops focussing on different aspects of research. Over a period of time, they looked at a few options of possible topics, and STRIVE collectively settled on researching friendships. The STRIVE members conducted interviews and collected data. This project was temporarily suspended due to the pandemic at the beginning of 2020. However, during one of the regular zoom meetings that Zandra had with STRIVE, they shared that they wanted to find out how other people with Down syndrome were doing during the lockdowns, and how they were coping. Drawing from previous experience, STRIVE designed a survey which included questions they were interested in asking. Franco, Zandra, and Averill worked closely with STRIVE to finalise these questions, though it must

be highlighted that the STRIVE members needed minimal input. The STRIVE members decided to conduct face-to-face interviews using an interview schedule of structured questions, as they had in the previous project. After lockdowns, they recruited people with Down syndrome nationally through Special Olympics sports, dance groups, social and leisure clubs, and through regional Down Syndrome Associations. A total of 40 participants took part in this study, comprising 20 females and 20 males, ranging in age between 18 and 41. STRIVE members conducted 36 interviews, however there were four participants who were interested in being part of this research but could not be interviewed face-to-face, so the interview schedule was posted to them. At a workshop, STRIVE members received further training on how to analyse data, and then had an opportunity to analyse some parts of the data. The members worked on the demographic data and with the quantitative data, they calculated the check-all-that-apply answers that the participants had provided. With some of the qualitative data, the members conducted a preliminary content analysis by looking for recurring themes and words. Very preliminary conclusions were drawn. Franco and Zandra worked on the thematic analysis and discussed the findings with the STRIVE members. The key themes that were highlighted from this research included access to information, emotional experiences, living conditions during lockdown, access to support, employment,

and staying connected with others. The research provided recommendations for government and/or service providers. This is an example of a truly inclusive research project where people with Down syndrome initiated a research project, codesigned it, co-researched it, and ultimately were co-authors in a top academic journal. This research is published in the Journal of Applied Research in Intellectual Disabilities (JARID), an international, peer-reviewed journal ranked as Q1, which places it in the top quartile of the most prestigious journals in the subject area. The title of the research is “Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand” and is available for all to read online.

We know that people with Down syndrome are often research assistants, but we are not aware of any research projects published in an academic journal where people with Down syndrome are also co-authors. This undoubtedly fits in with Down Syndrome International’s 2023 theme of “With us and not for us”. Franco, Zandra, and Averill have found this experience very rewarding and inspiring.

The STRIVE members involved in this research project are Duncan Armstrong, Edward Borkin, Alexandra Hewitt, Andrew Oswin, Caroline Quick, and Erin Smith.

These are a few comments from the STRIVE members about conducting research:

Andrew Oswin” “I have been involved with Dr Franco Vaccarino, a Massey University lecturer, on a project entitled

Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand. This was a project that STRIVE was very interested in. We had to come up with a list of questions which we had to ask Down syndrome people, but we did have some help with Franco and Zandra. We did this via Zoom or sometimes at Funshops in person. I found it really interesting to be part of the research team and we had a lot of findings. This has now been published in an article by the Journal of Applied Research in Intellectual Disabilities which is known as JARID. I have really enjoyed taking part in this research very much!”

Duncan Armstrong: “Research is about finding evidence.  Part of our evidence came from interviewing people with Down syndrome. I learnt how important it is to listen to people with DS, and also how to co-author our research”.

Edward Borkin: “The Covid research was interesting and helpful for others, as Covid was a difficult time for everybody especially those with a disability”.

Erin Smith: “As a STRIVE member I helped design research questions and interviewed several people with Down syndrome about their experiences during COVID. I also worked with Franco and STRIVE members to look at research results, including number crunching”.

To read this article, Google the title, then select onlinelibrary.wiley.com Once on the JARID page click the ‘pdf’.

NEO Notes

local dance group JorJaz, followed by a presentation from youth who shared more about the Enabling Good Lives’ approach and principles they gained at the COOL Funshop. A highlight was the rock your socks competition which showcased lots of creativity. Of course it was wonderful to socialise and enjoy delicious food.

I then had the opportunity to connect nationally with our community at the Big Connect. What an inspiring evening it was, with speakers exploring the 2023 theme of “With Us Not For Us”. If you missed the Big Connect, you can view the recording on the NZDSA website.

I have also enjoyed listening and reading all about the regional celebrations.

To raise awareness of WDSD, the NZDSA participated in a range of print and radio interviews. This year the NZDSA also collaborated with COORDown for their annual campaign to raise awareness, which included the launch of the video series “Ridiculous Excuses Not To Be Inclusive” on TikTok and elsewhere.

It was also encouraging to see so many of our members sharing their stories in the media, as each story is an opportunity to raise awareness.

Enabling Good Lives

Kia Ora

Celebrating World Down Syndrome Day (WDSD) is a highlight in my annual calendar, and this year was extra special because I was able to host an in-person event in Manawatū, my local community, following two years of online events. It was wonderful that we could reconnect, and the Youth Space venue provided a range of activities for our younger community and the young at heart. The afternoon was action packed and kicked off with a performance from the wonderful

The NZDSA has just completed a series of Enabling Good Lives (EGL) workshops in the MidCentral Region for youth with Down syndrome and their whānau. The NZDSA would like to thank Mana Whaikaha for the funding we received to host these workshops. The workshops provided opportunities for members to explore the EGL approach, principles, and how to relate this information to their personal vision for creating a good life.

The NZDSA will continue to share the EGL approach and principles via online education sessions as well as at the Kōrero

and Kai series planned in the regions. We will also share opportunities to connect to EGL training that other organisations will be offering this year.

What does the NZDSA do?

Yes, I am still exploring the question, “What does the NZDSA do”? In this issue of CHAT 21 I will provide an overview of the NZDSA’s role as an umbrella organisation and its relationship with regional groups. Thus far in this series I have shared that the NZDSA has a number of foci which include:

• advocating systemically 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 to deliver our core information, support, and systemic advocacy work as well as all the additional projects we undertake, as the NZDSA receives no government funding;

• celebrating people with Down syndrome, the incredible contributions of our regional groups and all our volunteers;

• raising awareness of Down syndrome in the wider community to bring about social change and transform our communities and society;

• creating and providing a hub of resources across a wide range of topics and issues for our members, professionals, and the wider community;

• educating and empowering our members and the wider community; and

• supporting and connecting parents in our community so that people with Down syndrome and their whānau can enjoy a good life.

The NZDSA’s role is to help facilitate the building of a network of support groups across the country. The NZDSA could be described as a peak body or an umbrella organisation that regional groups are connected to, and the NZDSA’s role is to help develop connections and build relationships among the regional groups

so that we can develop a collective and unified voice for the Down syndrome community. A vital role of a national umbrella organisation is to ensure that we serve and represent all our regional groups and local Down syndrome communities. The NZDSA believes that we have remained a grassroots organisation and that we take direction for our strategic goals from our members. To ensure that we remain a grassroots organisation the NZDSA National Committee members are elected as zone representatives by members in the zone they represent. Zone representatives are vital conduits between their zone and the NZDSA National Committee. These NZDSA Zone representatives serve on the committee as your representative to ensure that the work of the NZDSA is representative of regional needs.

A key role for a national umbrella organisation is to gather information, to advocate on behalf of our membership, and to represent the voice of the Down syndrome community. The NZDSA also leads national initiatives that we then share with our regions. This includes leading awareness campaigns like the “Dear Community”, “Dear Health Professionals” videos that we have created for World Down Syndrome Day, including the latest collaboration with COORDown on “Ridiculous Excuses not to Be Inclusive”. In many ways the work the NZDSA does will not be seen by the Down syndrome community as it involves work in the background, and while it might not be newsworthy, it is essential to ensure the development of connected nationwide support groups that are resourced and equipped for their role. Some of this background work includes the NZDSA providing regional groups with access to resources that they can give their community, like the “New Parent Pack” as well as other resources developed and printed by the NZDSA. The NZDSA also provides regions with access to a zoom account so they can connect with their members, or it might mean sharing employment contracts, policies or producing media statements or providing information on changing compliance requirements such as legal changes to the Incorporated Society.

The NZDSA also collects information about what is not working in the regions and when we identify common issues we start to have conversations with policymakers so that we can advocate for national change.

Working with regional groups we also hear common areas of need, and the NZDSA may respond by creating resources. An example of this is that collectively we have said the employment of people with Down syndrome is an issue, so with the wonderful support of Georgina Kirk and Kate Maroulis, organisational psychologists from Kindred, a boutique Organisational Development Consultancy, the NZDSA has published two valuable employment resources. In addition, we are having important national conversations about

the need for employment opportunities for people with Down syndrome.

The NZDSA also provides supports or resources to our community that regional groups may not be in a position to provide, such as offering a range of online education events or supporting members who are isolating because of COVID-19. Please do contact us if you require support as we have some resources to assist our members.

The NZDSA also believes that building the capacity and capability of regional groups and committees is important, so we have hosted national professional development days. The most recent event was the Caring and Connecting with our community hui hosted on the 31st March and 1st April 2023 in Auckland.

The purpose of professional development hui is to build the capacity and capability of the local regional groups and the NZDSA. The national hui also offers the opportunity to learn from each other, to share practices and projects that are working well, and to identify common issues that are impacting on the Down syndrome community so we can have a collective approach to address these needs and issues. Gathering together also enables us to glean information so that we better serve the Down syndrome community.

Sarah has provided an overview of this event which you can read on page 10—11. The NZDSA also hosts regular online meetings with regional groups to provide updates on what the NZDSA is currently working on, and to hear about the incredible work of our regions. These meetings are valuable as they provide opportunities for regional collaboration and to have a collective approach to issues. It is also an opportunity to identify shared issues which the NZDSA can then escalate to national stakeholder meetings or to the relevant Ministries.

The NZDSA also consults with regions to gather information so we can make submissions on key issues and to provide feedback at national policy development meetings.

Some regions have paid staff members, whilst other regions rely on volunteer

parents, so the 0800 service the NZDSA offers means that people can access support when they need it, and we can then link them to their regional group. So, in summary the NZDSA serves to connect, collaborate, and collect and share information so we can present a unified voice as we work towards achieving our vision that “people with Down syndrome are respected, valued and equal members of their community fulfilling their potential and aspirations”.

What’s coming in 2023?

Kōrero and Kai series

The NZDSA has secured funding to visit regional groups and to connect with our regional communities. The NZDSA will be hosting a Kōrero and Kai series across the country.

The NZDSA will be in Auckland on the 30th April and in Northlands 19th to 21st May. Please see the NZDSA Enews and Facebook page for more details. We are in the process of booking dates to visit the East Coast, West Coast and Southland. We hope to see you at these events.

Down Syndrome Awareness Month – 3rd Virtual Conference

The NZDSA will once again mark Down Syndrome Awareness Month by hosting a virtual conference from the 3rd to the 21st October. We will be sharing the programme via Facebook.

NZDSA AGM

16th October at 7pm.

Youth Development Camp

The Youth Development Camp, 24th –26th November at Vaughan Park, Long Bay, Auckland.

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.

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 me on neo@ nzdsa.org.nz any 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 CHAT21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Hei konā mai Zandra

IHC Library

The IHC Library has some great resources on looking after our awesome bodies. Here are a few of them. If you are interested in any of these items or would like to know what else they have please contact the library team (Phil, Ros and Michael) on 0800 442 442, email librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ You can watch the library video at https://www.youtube.com/ watch?v=AunmBYTIZTM

Your body is brilliant: body respect for children by

Sigrun Danielsdottir

Summary: "Bodies do all sorts of amazing things, like move around, grow bigger and heal themselves. Bodies also come in all sorts of shapes and sizes, and we need to take care of them so that they stay healthy and strong. If we listen to our bodies they tell us exactly what they need. The colourful illustrations in this unique picture book will encourage children to love their bodies from an early age. By learning about all the wonderful things bodies can do, and how each body is different and unique, children will be inspired to take good care of their bodies throughout their lives. Promoting respect for body diversity among children will also encourage kindness and help prevent bullying. This book is ideal for children aged 3 and upwards to read at home or school, either alone or with a parent, family member, teacher or other caring professional." -

PUBLISHER'S WEBSITE

Listening to my body: a guide to helping kids understand the connection between sensations (what the heck are those?) and feelings so that they can get better at figuring out what they need by Gabi

Garcia

Summary: "Listening to My Body is an engaging and interactive picture book that introduces children to the practice of paying attention to their bodies. Through a combination of story, and simple experiential activities, it guides them through the process of noticing and naming their feelings and the physical sensations that accompany them so that they can build on their capacity to engage mindfully, self-regulate and develop a deeper sense of well-being." - Publisher's description.

Teaching children with Down Syndrome about their bodies, boundaries and sexuality: a guide for parents and professionals by Terri

Couwenhoven

Drawing on her unique background as both a sexual educator and mother of a child with Down syndrome, the author blends factual information and practical ideas for teaching children with Down syndrome about their bodies, puberty, and sexuality. This book gives parents the confidence to speak comfortably about these sometimes difficult subjects.

In an easy-to-read, non-clinical style, the book covers relevant issues and concerns for children of all ages, such as: Labeling & explaining private body parts; Identifying & expressing emotions; Respecting personal space; Teaching self-care & hygiene; Understanding norms of privacy; Understanding gender identity; Showing appropriate levels of affection. It also covers later issues that affect teenagers and young adults,

Rose gets in shape by Roger

Banks and Paul Wallang

Let's cook! 55 quick and easy recipes for people with intellectual disability by Elizabeth

D. Riesz

This book helps you prepare your own meals with success! Learn how to cook simple and complete meals - healthy meals - with recipes using all the MyPlate food groups. Gain confidence in the kitchen and build self-worth. Designed by and for adults with intellectual disabilities, Let's Cook! promotes and reinforces life skills for independent living. Let's Cook! can help you: create healthy meals that cover your daily nutritional needs; control carbs, calories, and salt; follow food and kitchen safety; and most of all, eat well - today and every day! Inside you'll find more than 50 healthy "I can cook!" recipes - in large print and written at an early elementary reading level as well as in an easy-to-follow style of "What I Need - What I Use - What I Do." Colour photos accompany step-by-step preparations and nutrient information for each recipe that take the guesswork out of cooking.

Rose lives on her own and she has picked up some bad habits about eating and taking exercise. Her energy is low and she gets tired easily. When her doctor tells her that her weight is causing health problems, she decides to get in shape. We follow Rose through the struggles and triumphs of her weight loss journey, the new activities she takes up, and the good friends and support she finds along the way. This is a very visual book from Books Beyond Words. Picture stories are accessible to everyone, whether or not you can read words.

Fit Kit DVD and Streaming video

The DVD consists of three sections:

1. The Introduction explaining the advantages of being fit. 2. “Learn It” where a series of named exercises are described and demonstrated at walking pace by the instructor and a service user. 3. “Work It” which is the learned exercises performed to music and getting progressively faster as the session proceeds. Emphasis is placed on performing the routines safely as well as having fun. Also includes suggestions for other activities to improve fitness levels, e.g., swimming, going to the gym, ten pin bowling, dancing. Really well done and the break dancing at the end of the DVD could prove inspirational!

There is a 10-minute workout available as a streaming video accessible through their online catalogue. https://ihc. mykoha.co.nz/cgi-bin/koha/opac-detail. pl?biblionumber=17965

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

Gwen Matchitt Vice President

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

Angelique van der Velden

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

Bev Smith

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

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

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

Maia Faulkner

Zone 1 Representative

Auckland 0800 693 724 auckland@nzdsa.org.nz

Carey-Ann Morrison

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

Shelley Waters Treasurer treasurer@nzdsa.org.nz

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

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

Linda te Kaat National Administrator 0800 693 724 na@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

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

Grace Perry Administration Support Officer grace@nzdsa.org.nz

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

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

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

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

NZDSA Socials

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA

Follow us on Instagram to see what our communities are up to at nz_down_syndrome

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

NZDSA Membership

Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.

NZDSA Committee

NZDSA Staff Regional Liaison Officers

Share your employment stories

The NZDSA is asking people with Down syndrome and their employers to share their employment story. We have a range of ways of contributing to this resource.

• If you live in Auckland we are calling for people to participate in a video production.

• If you want to share your story but would prefer not to be on camera then just send us a written story.

• Film a short video of you at work answering the following questions:

For people with Down syndrome:

• Tell us about your job.

• Tell us about the things that you do at work.

• What are the favourite parts of your job?

• What does having a job mean to you?

For employers:

• Can you tell us a bit about your company?

• What does inclusion mean to you in your workplace?

• Can you tell us about some of the positive aspects of having someone with Down syndrome as part of your team?

Please also make sure your video is no longer than two minutes and is filmed in a landscape format. We would like to share these stories with our network to raise awareness. This may include online via our website and social media, so please make sure that anyone included in the videos is comfortable with this.

Please contact Zandra neo@nzdsa.org.nz before the 30th June to indicate your expression of interest in participating in a video or sending in your written or video contribution.

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

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!

Calling for nominations for the 2023 Youth Development Camp

24th - 26th November 2023 at Vaughan Park Retreat Centre, Long Bay, Auckland. Please note spaces are limited, so apply early! Applicants must be 18 or older to attend the Youth Development Camp.

Priority will be given to applicants who are existing Full NZDSA members.

Closing date 19th June 2023. Please email Zandra neo@nzdsa.org.nz for more information and to register your interest.

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

• Holdsworth Charitable Trust

• Eastern & Central Community Trust

• Te Whatu Ora — Health NZ

• Ministry of Social Development

• Joyce Fisher Charitable Trust

• Pub Charity

• Rata Foundation

• T G Macarthy Trust

• Lion Foundation

• Grassroots Trust

• Southern Stars

• Lindsay Foundation

Congratulations to the ARC giveaway Winner… the Libunao family!

Review from Celyn Libunao

We just want to share with you how Lucas is loving his Arc Assistant.

Since he is quite short, it is very helpful to have the Arc Assistant for him to be involved around the kitchen and have that eye-to-eye level with the people he interacts with. What is good about the Arc Assistant is that it is so easy to assemble, no screws involved but it is very durable and sturdy. It is even the only learning tower that has a safety standard rating here in NZ Cara has also kindly offered a $40.00 discount off the Arc Assistant Learning Tower 3 in for the NZDSA Down syndrome community. To redeem your discount, use NZDSA as your code when making a payment at www.arcnzbaby.com

Thank you Cara for gifting the Arc Assistant 3 in 1 to the Libunao family. To find out more about the products visit www.arcnzbaby.com.