Chat 21 Winter 2022

CHAT 21

ISSUE 90, Winter 2022 ISSN 2744-4635

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

Paterson-Hamlins celebrating Matariki

Editorial – Winter 2022 Sarah Paterson-Hamlin

Page 2

Welcome to the dual diagnosis edition of Chat 21! This winter, we wanted to explore some of the conditions that can impact people with Down syndrome, and hopefully provide some helpful information to assist in the diagnosis, understanding, and support for these conditions. You’ll find an overview of some of the more common dual diagnoses with links to helpful resources, contributions from our friends at Heart Kids and Autism NZ, Zandra and Kim both bring their experienced perspectives to the topic, and we also have the first part of the results of our survey regarding one of the more familiar dual diagnoses of late – COVID-19.

Maree Kirk discusses her work with Networks of Expertise, Māpura Studios let us know about some of their fantastic programmes and what their artists with Down syndrome are up to, Special Olympics tell us all about Tiah’s amazing progress, and UpsideDowns explores some of their history thanks to one of the stars of Down for Love.

There is a bumper Down Write Brilliant crop this season, and we speak to a beer brewer about his exciting job with a Collective he helped to found. All this and much more, including our usual smorgasbord of photos and tales from the community to warm these colder days.

I also hope you’ve all enjoyed celebrating our first official Matariki public holiday, and been able to participate in some of the many celebrations and events taking place all over the country. As part of these commemorations, you may have come across this whakataukī (proverb) which felt appropriate for this edition – “Nāu te rourou, nāku te rourou, ka ora ai te iwi.”

Which means, “With your food basket and my food basket, the people with thrive.”

This expression speaks to the way in which we all have something to offer, and by working together, acknowledging our unique experiences and perspectives, we can all thrive – even in the heart of winter!

Contents Dual diagnosis – an overview

4

Autism Terminology Resource

6

Covid-19 membership survey of parents and whānau of people with Down syndrome

7

Heart Kids

10

Our People

13

4-year-old Tiah gains confidence at Young Athletes Programme

14

Networks of Expertise Building Capability Across the Motu

16

Duke of Edinburgh Golden Award

18

Growing up with UpsideDowns

19

My Birthday Celebrations

24

Inclusion Means…

25

Renee – Getting through COVID-19

26

Poetry Page

27

Independence Collective, Changemaker Beer

28

Getting ready for hospital visits

30

President’s Pen

32

NEO Notes

34

Our People

37

Māpura Studios – Changing Lives Through Creativity

38

IHC Library

40

Contact Directory

42

NZDSA Notices

43

Our People

46

Page 3

Dual diagnosis – an overview When we hear the term ‘dual diagnosis’ used, it often refers to a diagnosis of both Down syndrome and Autism. Framing something as a dual diagnosis has many benefits, primarily because something like Autism will present differently in an individual with Down syndrome than it might for someone without that particular dual diagnosis. Factoring this in can lead to earlier and more reliable diagnoses, and better support for that individual’s needs going forward.

However, Autism is not the only condition that can be diagnosed alongside Down syndrome and understood differently as a result. In this very brief overview, we’ll explore some of the most common diagnoses that can come alongside Down syndrome.

For many of these conditions, diagnosis is more challenging than in other populations because of the overlap of characteristics.

However, in almost all instances, diagnosis can lead to treatments that mitigate the characteristics of the non-DS diagnosis, or even eliminate some of the harmful health effects. This is definitely not exhaustive, so if you’re concerned about a possible dual diagnosis for someone with Down syndrome in your life, then check out the additional resources and speak to your doctor.

It’s important to note that most of the conditions below, as well as Down syndrome, have different characteristics for every individual. The characteristics discussed below are indicative only.

Page 4

Autism This is challenging to diagnose in the general population, but as speech delay is a significant part of the diagnostic process, it can be even harder to identify in a person with Down syndrome. In addition, people with Down syndrome and Autism can show more social interest in peers than Autistic people who don’t have Down syndrome. However, diagnosis can lead to greater support, additional networks, additional funding, and better understanding for someone with this dual diagnosis. One characteristic that might set Autism apart from Down syndrome is repetitive body movements, another could be lack of eye contact or socialising compared to others of a similar age who also have Down syndrome, and greater sensitivity to things like loud noises or certain smells, tastes, or textures. Because Autism is comparatively common, there are many excellent organisations and resources that can support Autistic people and their whānau, and NZDSA is also working on a resource for those with this dual diagnosis. Check out Autism NZ and some of their exciting programmes for example.

Coeliac disease As with Autism, common characteristics shared with Down syndrome such as delayed physical growth can make this challenging to diagnose. However, the rewards of doing so are again significant, as people with this condition can recover completely by removing gluten from

Condition

Approx % in DS population

Approx % in general population

Autism

8—10%

0.5—1%

Vision impairment

60%

5—8%

Coeliac disease

4—17%

0.2—1%

Sleep apnoea

30—60%

10—25%

their diets. If a child or young adult with Down syndrome is growing at a rate below the growth charts for children with Down syndrome, or they are past the toddler stage and still not growing much hair, then these can be indicative of coeliac disease, and blood tests and/ or biopsies can be carried out to confirm the diagnosis. NZDSA has a free resource on coeliac disease and Down syndrome on our website that comes with some great gluten-free recipes as well.

Sleep apnoea This condition causes difficulty breathing during sleep, and occurs more frequently in people with Down syndrome because of physiological characteristics.

Diagnosis and treatment can lead to improved concentration, better cognitive development, better sleep, better memory, better heart health, and even fewer tantrums in little ones! So if someone with Down syndrome is snoring, experiencing restless sleep, or is excessively sleepy during the day, then a diagnosis of sleep apnoea could make a big difference.

Treatments include removing tonsils and adenoids, using CPAP or BiPAP machines, or a new treatment called Hypoglossal Nerve Stimulation. The National Down Syndrome Society in the US has a helpful section called “Sleep and Down Syndrome” on their website to have a look at.

Vision impairment This field of dual diagnosis has the benefit of a dedicated team of researchers in Wales called the Down Syndrome Vision Research Unit, so we have plenty of great information about this one! For instance, we know that many children with Down syndrome don’t reach the same level of detail vision (visual acuity) as other children the same age, as they often don’t grow out of the visual defects that all infants are born with. Visual impairment can lead to difficulty with early literacy and make participating in games that require visual skills like ball games or puzzles difficult, so an early diagnosis is very helpful. However, as many of you will know (and as I recall myself from having glasses from age seven!) getting a small person to utilise glasses can be a big challenge. Fortunately, NZDSA has a resource about this very topic on our website that can help you get your little one used to glasses.

Page 5

Autism Terminology Resource As one of the more common dual diagnoses alongside Down syndrome, and the most common intellectual disability among younger age groups in Aotearoa, Autism is something most of us will encounter at some stage along the way. Autism New Zealand is one of the organisations working to support and empower Autistic people and their whānau, and they have kindly given us permission to share a small extract from their comprehensive terminology guide. You can find the full version on their website.

Preferred terminology, naturally, varies from person to person and is always evolving, just as it does within the Down syndrome community, and some people may find their preferences differ from this guide. One thing that may stand out is the general preference for identity-first language (i.e. Autistic person) as opposed to the person-first language (i.e. person with Down syndrome) which is usually preferred in the Down syndrome and other communities. Ultimately, it is down to each individual concerned to decide the terminology that they feel best and most respectfully applies to them. However, we hope this can be a helpful starting point, having been developed by Autistic people in New Zealand alongside Autistic advisors at multiple organisations.

Page 6

Reject Misleading Terms and Replace with Autistic-preferred terminology Instead of…

Consider using…

Autism Spectrum Disorder (ASD)

Autism

Person with autism

Autistic

Autism symptoms

Autistic characteristics

Normal person

Allistic (non-autistic)

Co-morbidity

Co-occurring

Reframe understanding of autism and autistic experiences Instead of…

Consider using…

High/low functioning, severe/mild autism

Describe specific support needs

Someone doesn’t look/ act autistic

Consideration of Autistic masking

Autism cure, treatment, or intervention

Focus supports on Autistic wellbeing

Rethink how to empower and support Autistic people Instead of…

Consider using…

Twice-exceptional

Strengths and support needs

Restricted interests, obsessions

Specialised/focused/ intense interests

Puzzle piece symbol

Infinity loop neurodiversity symbol

Covid-19 membership survey of parents and whānau of people with Down syndrome

By Sarah Paterson-Hamlin and Zandra Vaccarino

In early 2021, the NZDSA wanted to undergo a stocktake so we could understand how our members were experiencing COVID-19. The information gleaned shaped how we could support our community as well as ensuring that our systemic advocacy was relevant to the needs of our community.

Omicron has had significant impact in New Zealand, and while we had some feedback we thought it would be timely to do another survey so that we have a clearer understanding of how parents, whānau, and people with Down syndrome were experiencing the Omicron environment.

The stories you shared and your feedback from the survey will ensure that the NZDSA can effectively represent the Down syndrome community when we advocate to various Government Ministries and Providers. We noted that you are finding our COVID-19 Bulletin useful so we will continue to provide you with our regular COVID-19 Bulletin.

Respondents All but one of the respondents were parents of a person with Down syndrome. None of the respondents lived with Down syndrome themselves. 88% had their child living at home, with 6% in supported living arrangements, and one respondent each with their child living independently and in residential living arrangements. Most of the people with Down syndrome discussed were under the age of 30, with 12% in the 31-45-year age range, 35% between 22 and 30, and 53% being 21 and under.

The geographic spread of respondents was diverse, including good representation from those areas most impacted by Omicron-related lockdowns.

Page 7

As might be expected, the variety of responses were as diverse as the Down syndrome community itself to most of the questions. Some whānau reported positive experiences from lockdowns, government support, communications received, and ongoing benefits such as remote speech and language therapy sessions. Others reported long-term mental and physical health challenges as a direct result of lockdown measures, for both their person with Down syndrome and for the wider household.

“The impact... is huge as people are still needing to isolate or be at home sick with COVID-19... there are huge impacts on staff shortages with disability services that impact us greatly as things may change on a daily basis.”

Support and Services Respondents were overall positive about the continuation of health services during the Omicron outbreak, although many mentioned staffing shortages. It was in the areas of respite care, community activities, and education that Omicron’s impact was felt most keenly among respondents.

In addition, though many were understanding of health, education, and other services being in a completely new scenario, there was general dissatisfaction with the clarity of information flow.

“We would like our GP to have been a lot better informed about children’s vaccines, and in communicating early vaccination availability to families with vulnerable people.

Also – to have had some personal contact from GP or paed(iatrician) directly... School support was not wellestablished during Omicron, but is starting to get better for us – this is because our school is pro-active.”

The response above and the graphs indicate the variety of experiences families had.

Page 8

The graph demonstrates the shift from general satisfaction with supports and services prior to the pandemic to a much less positive picture during the Omicron outbreak.

This is particularly concerning in light of the many responses that reported negative mental health impacts on their person with Down syndrome as well as the wider whānau.

Respondents who mentioned mask or vaccine mandates were divided between those who were anxious for these to continue or concerned that they had relaxed too soon, resulting in further isolation for them and their immunocompromised loved ones, and those who disagreed with the mandates and found them to have had a negative impact on their services, reducing those they were able to access due to either staff shortages or their own decisions regarding these.

Vaccination While the vast majority reported positive experiences with vaccines, testing, and the information provided during the pandemic, the disagreement and controversies around COVID-19 vaccination visible in the general population were unfortunately also clear in the responses to this survey.

For example, although 74% of respondents felt they received the information they needed, when they needed it during the pandemic, one respondent commented that neither NZDSA nor the Government should have been providing any information about the Pfizer vaccine. More common, however, was the response that Government and providers had done extremely well in the circumstances, but that service provision, balancing family life, and the ability to engage socially were all significantly and negatively affected by Omicron. “provider communication has been excellent all the way through” The experience of the vaccine itself appears to have been overall positive, as the graph to the right indicates.

However, the 29% who responded ‘N/A’ is concerning.

A slight majority of those answering N/A had children under the age of eligibility at the time (12), but the remainder – 13% of the total responses - represent those who disagreed with vaccination and did not take it up: a disproportionately high percentage compared with the general population, of which only 4% have not received the vaccine.

The quotations demonstrate some of the complexity of this issue for the community.

“My spouse is anti-vax. This has been a major source of stress in addition to the medical issues of the pandemic.”

“We have had no supports due to vax mandate” “[It’s] too risky to even go to a cafe now as masks not required or vaccine passes” “[The impact of COVID-19 has been] probably the same as most families, my older children more so especially with the introduction of vaccine passports. They were unable to socialise or play their sports. Thankfully they can do those things that are important to them now.”

The survey also included interesting insights in regards to the experience of Omicron itself for people with Down syndrome, isolation when someone in the household tested positive, where information was received from, and well-being during Omicron restrictions. We will explore these in the Spring edition of Chat 21.

Page 9

Babies

Heart Kids About 50% of new-borns with Down syndrome have congenital heart disease. Often, this means surgery while still a baby, but the prognosis in New Zealand is excellent, and the overall risks of this surgery are no different from the general population according to research released last year in the Journal of Congenital Cardiology. We spoke with Ashley Mills, the Hospital Family Support Co-ordinator for Heart Kids NZ, a fantastic charity that supports whānau throughout the country who have children with congenital and acquired childhood heart conditions, to find out more about their work and heart conditions. Their website is www.heartkids.org.nz Many NZDSA members know first-hand the amazing work that Heart Kids NZ undertakes every day to ease a challenging journey.

Where can babies receive heart surgery in New Zealand?

Starship Hospital is the only place in Aotearoa that does cardiac surgery on babies.

What professionals are usually involved in a paediatric heart surgery?

Paediatric cardiologists, surgeons, nurses, anaesthetists, radiologists and possibly some others depending on the circumstances.

Is there more than one kind of heart surgery?

Yes, there are lots of different types. There is open-heart surgery, where the chest is opened and the patient goes onto bypass, and there are other types of heart surgery and cardiac procedures that don’t require open-heart that can be done by cardiac catheterisation.

Page 10

Your baby having surgery is of course a scary and stressful time for whānau – how do Heart Kids work with families around this time?

We connect with families in the community and/or the hospital, we are there to listen,

to inform, to support, to walk alongside them whatever their needs are at the time.

This may mean a home visit before the surgery to help families prepare - with information, practical, emotional, and at times financial support. Or it could be a phone call, or it may mean visits from a hospital Family Support Taituarā (FST) on the wards in Starship who will connect, provide emotional and practical support, provide information, and be a friendly face who can listen and spend time if needed.

We take into consideration the whole family as well, siblings for example. We can assist to refer to other agencies or support if this is required.

What can a family expect in the weeks following a surgery?

It really differs from family to family. Some are in hospital for many weeks or months before they can go home or transfer to a hospital closer to home, others will make a quick recovery and be home within days or weeks. Emotionally, we continue to support them during this time, and when they are home in the community Heart Kids NZ FSTs engage and offer support and connection in the local community.

In hospital after open-heart surgery, there is a pathway: time in PICU immediately after surgery where they will be constantly monitored, the parent cannot stay overnight, then, when ready and stable, they are moved to Ward23 B to the intensive observation room (IOA) and the parent will still sleep elsewhere. Many medical procedures will happen over this time, baby may do well one day then have a setback another, re-establishing feeding can be problematic and take time, sometimes another surgery is needed, other times they progress straightforwardly, move to a single room where the parent can room in and then baby will eventually recover and go home. Families from out of town will sometimes be without their other children or have limited support from a second parent during this time, depending on their circumstances, and COVID-19, so are often quite alone which can be stressful and exhausting. Once they do go home the situation will vary, some can get back to a “normal” life pretty much straight away and others will have longer-term things that need managing.

There will be follow-up appointments, periods of rest and possible isolation, but depending on the surgery and procedure timing will be different for every family.

What can they expect longer-term – do most babies make a full recovery?

Again it really differs from child to child, depending on the Congential Heart Defect (CHD), what surgeons are able to do and a whole raft of other factors. CHD can never be “fixed” but after some repair surgery e.g. coartation of the aorta or a VSD or ASD closure, many will live a full and normal life with only occasional cardiac check-ups needed or even be eventually discharged from Cardiology services if it’s deemed they no longer require follow up.

Many others will need continual regular monitoring. They may require further surgeries as they get older, others may have frequent check-ups, regular Cardiac Catheter procedures and other interventions to tweak previous surgery or

deal with ongoing changes caused by the CHD such as valves repaired or replaced, arteries ballooned, or pacemakers put in.

This may require further trips to Auckland.

Some will go years before needing follow up and never need any other intervention.

Feeding and trying to gain weight can be an ongoing issue when home awaiting the next surgery. Cardiac babies may get complications if they get something like a cold so this can impact on the family and how isolated they may need to be. I can say that many of them, despite their condition, live life to the fullest and have resilience and attitude that sees them get the most from life!

1.

Delany, D.R., Gaydos, S.S., Romeo, D.A. et al. Down syndrome and congenital heart disease: perioperative planning and management. J Congenit Heart Dis 5, 7 (2021).

Page 11

Left: Ashley Mills Right: The Heart Kids Camp

Page 12

What is some good advice for parents expecting heart surgery for their little one?

Ask all the questions that you need answers to in order to make yourself feel comfortable - this will vary from parent to parent. Be prepared that things will change and change again, that it’s not always possible to have all the answers beforehand, plans and schedules can change, and taking it day by day is the only way to do it.

Be reassured that we have amazing, dedicated, world-class surgeons in Starship Hospital, and that everyone involved in the team will do their absolute best for your baby.

Ask your friends and whānau for support and accept it - it can be a long road ahead for some and having support in place can ease some of the stress.

Do you have a number one recommendation for something to bring into the hospital?

Something of comfort for your child like a favourite toy or blanket (or device they can look at in bed to distract).

What other types of support can Heart Kids provide?

All kinds of things! We offer camps, forums, connections in the community with other heart families, education, advocacy, bereavement support, and antenatal support. Our website is a great place for families to find more information, resources, connections, news and heart stories from across Aotearoa: www.heartkids.org.nz

Our People

Show us your uniforms!

Top left: Tim Dinsdale in his Karate uniform Top right: Bradley Whipp at Logan Park in his High School uniform Bottom left: Ryan Mora in his Auckland Grammar School uniform Bottom right: Greta Dixon in her SONZ uniform

Page 13

Pre-school

Tiah enjoying the catch the bubbles game at Young Athletes

4-year-old Tiah gains confidence at Young Athletes Programme

By Special Olympics New Zealand

Page 14

After almost four months in lockdown, Auckland mum Natalie Robinson found a way for her daughter, Tiah, to overcome her shyness through Special Olympics’ sport and play programme for children, Young Athletes.

Being locked down meant that like many other children, Tiah had a difficult time learning important physical and social skills, Natalie explains.

“So many kids in lockdown were missing out on socializing and developing those things you learn when you’re young, because they’re not getting out and doing stuff.”

Even before lockdown, Natalie says Tiah has always been behind physically when compared to her peers and struggles to do the same activities they do.

“With Down syndrome you get the mental delay, but you also get the physical delay.

Things I’d see other kids her age doing, she wasn’t.”

Natalie first heard of Special Olympics New Zealand’s Young Athletes programme

in 2019, a free sport and play programme designed to help develop motor and social skills for children with intellectual disabilities.

After taking part in her first Young Athletes programme when Tiah wasn’t yet one year old, Natalie brought her back when she was three and says the improvements in her physical skills and confidence were plain to see.

“It really helped her with kicking and catching and throwing - she got so much better during the time she was there.”

“She also improved in ways I couldn’t imagine, like socially. Before when we’d go to Kindy, if there was a new activity she’d hide and not go near it, but now she gives it a try and gets excited about it.”

Natalie says Tiah enjoyed the programme more than she expected and overcame her shyness of new people within weeks.

“The first session she stuck to me like glue, but a few sessions later she was like ‘cheers mum for dropping me off, I don’t need you anymore’.”

Left: Natalie and her daughters Tiah and Jentah enjoying a day out Right: Tiah practicing her balance with sister Jentah supervising

Natalie has also enjoyed bringing her other daughter, 2-year-old Jentah, along to the programme, even though she isn’t diagnosed with an intellectual disability.

“It’s great for her to be involved and she’s fit in so well. Other siblings of Young Athletes have come along too and it’s lovely that no-one seems to notice the disabilities, everybody just wants to have fun.”

Natalie says being a single mum of two can be challenging, and having activities designed for children with an intellectual disability, such as Tiah, provides a lot of support.

“There are a lot of people in my situation who are on their own with children with special needs, which can be very stressful, in life everything’s very different. To have things that are specifically for them, run by people who adapt to them and understand that your child might not get involved or understand something straight away, makes such a difference.”

Now after seeing the benefits of Young Athletes, Natalie aims to keep Tiah as

active as possible and get her involved with sports in the future.

“I want her to be healthy and be into sports and have the same opportunities as everyone else.”

Young Athletes Programmes are currently offered in multiple locations across Auckland with programmes starting in Wellington in Term 3.

For more information visit specialolympics.org.nz/young-athletes

Page 15

Primary

Networks of Expertise Building Capability Across the Motu

By Maree Kirk

Networks of Expertise (NEX) were established as a key part of Professional L e a r n i n g a n d D eve l o p m e n t ( P L D) capability infrastructure following a Te Tāhuhu o te Mātauranga (Ministry of Education) review in 2015/16. The NEX initiative was piloted in 2016 and 2017 and introduced nationwide in 2018. In the past two years, NEX have mentored, coached, and provided professional learning development to as many as 15,000 teachers and kaiako throughout Aotearoa.

Page 16

“The strength of the programme is that the educators leading the networks are the very best teachers in the country,” says Murray Williams, recently retired chief executive of Whanaketanga Kaiako Aotearoa/Teacher Development Aotearoa (WKA/TDA).

Most of the original nationwide networks we re s u b j e c t - re l a t e d f o r ex a m p l e agribusiness, or technology. In 2020, the Ministry of Education released a tender for further NEX and realigned it to support the strategic direction of changes in the education system. These included the Aotearoa New Zealand Histories Curriculum (ANZHC), the Review of Achievement Standards (RAS), the NCEA Change Programme, and the wider refresh of The New Zealand Curriculum.

In 2021, 11 communities of practice and interest group networks joined the Network to establish a total of 36 groups.

These included interest groups and

networks representing Pasifika education, gifted education, online teaching support, and inclusion of students with learning disabilities and Down syndrome.

The teacher and kaiako-led service promotes peer-to-peer learning that strengthens collaboration and provides teachers and all kaiako, schools, and kura with ready-to-go support. Les Hoerara is representative of the quality of educators involved in the programme.

The Kaitakawaenga, iwi relationship and partnership manager for WKA/TDA brings a background as an educationalist, researcher, and advocate of tikanga Māori to the NEX. Les supports and develops cultural capability across the NEX and resides in Tauranga Moana (Education Gazette, 2022, 101:1).

NEX: Supporting Teachers Practice for inclusion of students with learning disabilities and Down Syndrome.

This is the first Ministry of Education contract for PLD for children and young people with learning disability and Down syndrome in New Zealand. Its focus is on inclusive pedagogy with an interest in students with learning disabilities and Down syndrome.

Programme Director, Dr Maree Kirk, ran the Supporting Teaching Practice for Students with Learning Disability and Down Syndrome (STPDS) programme from 2009, which formed the basis for this contract. It is a capability model for children and young people with Learning Disability and Down Syndrome in regular

education. It is based on the ecological systems approach to wellbeing for children with a disability and comes from 15 years of service provision and PhD research.

This was also the basis of Dr Kirk’s research presentation in 2021 to the World Congress on Down Syndrome and the Australasian Institute of Intellectual Disability. The Supporting Teaching Practice programme has reached over 150 schools across New Zealand to date. NEX interactive forums for teachers working in primary and secondary schools have been run in Whakatane and Christchurch in 2021.

Dr Kirk says, “The Whakatāne NEX group has a PLD schedule that has included a two-day seminar and resource development on the Individual Education Plan and Individual Transition Plan from school with an interschool and agency policy. Whakatāne/BOP region also held an Inclusive Literacy Design workshop, and we will build in the development of action research from this to track the teaching practice and students’ progress.

In Wairarapa, the focus was on literacy, with one day on reading and language Intervention.

Dr Kirk says, “Thinking more about inclusive curricula and assessment design at the outset of all lesson planning is paramount. This involves working with teachers, establishing learning pathways and assessment tasks with whānau and teachers, using evidence about students' knowledge, understanding, and skills

to inform their teaching and everyday learning across all environments.”

“It is important to engage children and young people as students in the planning process, in setting goals, and in their social skill development so that their ambitions and expectations are part of building capability throughout their education.”

The NEX offers specific topic areas and links to theory and practice, full access to evidence-based resources, and resource development across a local group within your area or Kāhui Ako (Community of Learning). There is also some allowance for teacher release time for specific NEX PLDs. The NEX is an exciting development for the community of children and young people with Down syndrome and learning disabilities to provide adults around them with easier access to PLD. For further information email: info@stpds. co.nz Dr Maree Kirk is a wellbeing and capability consultant. She has a considerable career background in health and education and as contract Teaching Fellow in the Department of Societies and Cultures at the University of Waikato. She is the Director of the Bay of Plenty Down Syndrome Association Inc. an incorporated society operating as a charitable trust to provide professional development and an educational resource package to students w i t h D ow n sy n d ro m e a n d l e a r n i n g disability.

Page 17

Secondary

Duke of Edinburgh Golden Award

By Hamish Gilbert

Hamish and surprise visitor Jemma

Page 18

I left Hawkes Bay on Thursday 9th June in our family motorhome to journey to Auckland for my Duke of Edinburgh Gold Award Ceremony, staying the first night in Taupo. The next morning, we traveled to Miranda to stay the night at the Holiday Park.

On Saturday eleventh, we left Miranda at 5.45am and travelled to Auckland; a nice early morning drive to the Raye Freedman Art Centre at Epsom Girls Grammar School, where the Duke of Edinburgh prize-giving was being held. We parked right outside the main entrance and started to dress up into my smart clothes. I even wore my Mum’s Edinburgh University tie. Then off we went into the building to be ticked off the guest list and I proudly picked up my shiny gold award badge. The lady then took me through to the back room to be put into name-sequenced order with the other recipients while Mum and Dad were ushered into the hall. Once the sequenced order was done, the lady walked us all into the auditorium to be seated.

Karen Ross, the National Director of the Duke of Edinburgh’s International Award opened the ceremony and introduced the speakers. After the introduction was done, Sarah Hillary (Sir Edmund Hillary’s daughter) was asked to present the

Awards to the Awardees one by one, and she shook our hands and we all had a photo taken together with her without facemasks on which was exciting. Sarah then spoke about her journey, which was fascinating.

Once Sarah’s speech finished, they asked the New Zealand Governor-General, Cindy Kiro, to speak. Then we had a group photo and the Governor-General shook each and every one of our hands as we walked onto the stage.

All of my hard work has paid off and it was a privilege to receive this award from the Governor-General of New Zealand and Sarah Hillary. It was just wonderful!

I have never received anything like this from such amazing professional people in my whole life. I feel immensely proud of what I have achieved: being able to pick up two awards in Auckland - firstly an Attitude Award in 2020 and now my Duke of Edinburgh Gold in 2022.

While up in Auckland I was also able to celebrate my Duke of Edinburgh success and my 20th birthday with my Auckland Aunty and Uncle and my twin brother, as well as my parents, on the Auckland Harbour at the Conservatory Restaurant.

It was really special to celebrate my successes in this way and to bring my Duke of Edinburgh journey to an end. It was a real highlight.

But there was one more surprise for me - I had a special visitor who knocked on our motorhome door. It was my Special Olympics Wellington Head Office Event Coordinator, Jemma, who moved house to Auckland and had come to personally to congratulate me. It was so cool to see her.

It was a huge surprise that came out of nowhere and I wasn’t expecting that. She even gave me a nice card and a kiwi, which I have named Jemma Kiwi.

It was an incredible trip to Auckland - the best ever and I will rate my trip out 10 out of 10 stars!

Growing up with UpsideDowns When Josh Bradley was a baby, his Mum’s coffee group turned into something bigger – a charitable trust that today funds the speech therapy needs of nearly 300 children with Down syndrome across Aotearoa. Josh was there from the very beginning in 2003, and remained a member until 2017. Following his TV stardom on Down for Love, his Mum, Nic, spoke to me about their journey.

Nic was a new Mum in winter 2000 when she first met Jo Adamson, a second-time Mum who’d also just had a new arrival with Down syndrome. Josh was Nic’s first child, and she was glad of a friend who had a bit of extra parenting experience, but whose child with Down syndrome was the same age as Josh.

“She had her third and I had my second at the same time as well, so it all just worked, it was really good. It was lovely for the kids and it was great support,” says Nic. Together, they began to realise the strengths and weaknesses of public support when it came to their children with Down syndrome.

“We both did sign language – Makaton – and we both found there was no back up to that.”

I asked Nic about the role of Makaton in those early years for Josh.

“Huge, absolutely huge. And so beneficial.

I would highly recommend it to any of your new members, get them straight onto it, because it just means that the kids don’t get frustrated. And our kids get frustrated a lot - and who can blame them, when you can’t actually get what you want or what you need or get across how you’re feeling – it’s just a basic human need really, eh?

And to be able to do it so young, to say that you’re thirsty or you’re hungry or you need a hug… it gives you warm fuzzies!”

Young Adult

However, this was something they’d taken on themselves, and there wasn’t much available to develop Josh’s speech beyond what Makaton could provide.

“The public speech therapy was so hit and miss and so few and far between, and we just needed to do something else. Neither of us were oozing money, but we went private.”

Unfortunately, Nic’s experience of public speech therapy is strikingly similar to the stories we hear at UpsideDowns in 2022, over two decades later. The graph below shows the results of a 2020 University of Auckland study that demonstrate the gap between what is provided and what families need, many spending thousands of their own limited funds each year to access them.

Page 19

Left: Jacob (L) & Josh (R) the first day they met Middle: Jacob & Josh as kids Right: Josh Bradley & Jacob Adamson today

Page 20

For Nic and Jo, there was no UpsideDowns, no way to support their choice to provide this intervention for their children.

“We had a speech therapist through the Government but I kind of felt that she’d just come and play with him. And I was sitting there and I got really frustrated. These are really spongy years and I need to get as much crammed in there as I possibly could. So that’s why we went looking for someone else to do it. And then we found Sarah [Goodall] and saw what she was doing and how she was doing it and the results she was getting… we totally just ran with it and then of course the pocket kind of went – eurgh! Help me!”

Nic and Jo were meeting up with another parent, Hannah Blow, when the idea for what become UpsideDowns began to form.

“We were just sitting round having a coffee one day saying this is ridiculous, none of us could afford it [speech therapy], it was some hideous amount of money that we were paying on a very regular basis for our kids, but there was no way we wanted to stop it either, so that’s what got us thinking there must be a better way and…started the Trust! It’s so cool to know that it’s still going and that it’s still helping families, it’s so good. Because it’s something that’s really needed in New Zealand.”

I asked Nic why it was speech therapy in particular that the trio isolated as the need they wanted to support.

“I can’t speak for the other two, but for me personally, because Josh was our first – he was just him. We did everything mainstream. I mean, yes we did the Down syndrome coffee groups and all that sort of stuff but we did everything mainstream – he grew up against his peers.”

The only thing the Bradleys found to be really lacking for Josh was speech; “the sign language actually put him above those other kids for a time and he was talking before others and telling me he needed to do this and all that sort of stuff and they actually picked up sign because of him. But when the gap started going the other way and the kids started talking and Josh wasn’t – or he was trying and words weren’t coming out right – that’s when I went, ok something needs to be done about this.”

Josh also had club feet, but when it came to the physical side of things, Nic found that public support was well-provided. “it was the cognitive stuff that we weren’t getting from them. All the physical stuff, and the health stuff we didn’t have any problems with, that was all fine. It was the cognitive that we just weren’t getting. And that’s what’s so, so needed for these kids.

Communication is their biggest challenge (in my view). Communication for them is such an important part of becoming a valid member of society – why are they not putting in the resources?? Ropes me, eh? It makes me so angry!”

Thanks to the group’s efforts, however, UpsideDowns is now providing 292 families with support to access regular, individualised speech therapy for their children with Down syndrome, even if, unfortunately, the public picture hasn’t changed all that much.

“It was such a really busy thing to set up but really rewarding as well, and we had a lot of fun, we had some really awesome people that came on board and had the most amazing ideas and brought some really cool stuff to the table. Mel Watson who was epic and got the whole Share the Dream thing started and that was really fun and we had lots of fun with that.”

Nic found that through her work with UpsideDowns, which began life as the Auckland Down Syndrome Education Trust (ADSET), all kinds of new connections took place.

“John Gilles and his daughter Karen… they were so helpful and I literally roped John in because I used to work with him and had such a good rapport with him at work. And he doesn’t have any connection whatsoever to Down syndrome – he literally had a work connection to me, and yes we had good banter but that was it, and that’s how we got Karen on board as well. I just love people like that. They’ve got no connection to it, no reason to do it other than that they’re just nice people.

And I think that’s one thing that having Josh and getting out there and doing all these weird and bizarre things that you’d

never do if you didn’t have a Josh, you meet some awesome people, you really do.

It actually restores your faith in humanity.”

At these early stages, the Trust was supporting around 10 Auckland families, including Josh. By the time Nic started to become less involved with the running of UpsideDowns, there were around 100 children from other parts of New Zealand too, as well as Auckland.

Josh remained a member and accessing speech therapy through the Trust until his last year at school in 2017, when the family and Josh decided to step back.

“He got sick of speech therapy. He got to that age and he was just done with going and I said, well, as soon as you talk properly, we can stop! That helped! I think Alison [Owen, Josh’s therapist from 2013 onwards] and I decided, both of us, that it wasn’t going any further… in his brain he was done. And he’s his own person. My other two kids, they get to decide and if it’s something like that then it’s kind of their decision. We pushed him in two things and one of them was speech therapy, I definitely pushed him in speech therapy a lot longer than what he wanted to go, and the other one is swimming because they all need their fitness and he’s got bad knees and feet and swimming is good. So that’s the only two things we ever pushed him into, and the rest of it if he doesn’t want to do it then he doesn’t have to do it… And every now and again I have to say to him, slow down, say that again.

Page 21

Left: Share the Dream 2009 Middle: Bradleys at Share the Dream 2012 Right: Josh Bradley, Laura Blow, and Jacob Adamson at Share the Dream 2009

Page 22

And I’ve threatened – ‘do we have to go back and see Alison?’ – ‘No!!’ So, he knows.

Most of it’s pure laziness really.”

Josh has always been ‘one of the boys’ as Nic describes it, and in keeping with this, he decided to leave school along with his peers at the age of 18. He did a year at Manukau Institute of Technology, which Nic found to be beneficial mostly for the associated skills than the course itself.

Things like taking public transport and venturing into a more independent world.

After that, Josh was keen for a job, and Spectrum Care stepped in to great effect.

“We used Spectrum Care for transition out of education and Carlijni was the best person I have ever met, she was just incredible, and she sat Josh down and said what do you want to do? And he listed all of these places he wanted to work and she said, right, give me a priority order, and he did. And top of the list was Rainbow’s End and she went off and got him an interview!

It was all Josh-led. Carlijni dealt mainly with Josh, asked him the questions, spoke with him about the interview. He got the job and he’s been there ever since. Really cool company. I could not rave about Rainbow’s End enough.”

Nic described how they brought her in for a discussion about how they could best support Josh in the wake of all the COVID-19 disruptions, and how she asked for an extra hour or two. They responded with an extra day and two extra hours on each of his existing days. “Now he works 3 days a week, 5 hours a day. They are just amazing.”

When Josh joined us having returned home from the gym, I asked him what he liked about working at Rainbow’s End. “The money!” was his reply. “I do enjoy my workmates,” he later added, and agreed that it was fun working with kids in a place he had enjoyed when he was a child himself.

When I asked if speech therapy had been any fun, his response was a little less enthusiastic.

“Oh yeah, sometimes fun, a little bit soso. Sometimes it wasn’t. Yeah, it was hard, thinking in my head.”

I asked if the effort had been worth it and he didn’t hesitate to agree.

“Yep. I talk to my friends all the time.

Friends, girlfriends…”

This brought us on to the subject of Down for Love, and Josh’s new-found fame.

“It was a different experience!” Nic says of filming, “Josh loved it, absolutely loved it, and loving it now – loving the attention, wants to give everyone his autograph! We had a little family gathering every Monday night to watch the show – Oh my god, the first episode we were just rolling on the

floor laughing and it was so funny. And his one-liners, we were just like, oh my god Josh! – ‘Hang out. Make out!’”

Josh had a great time, but Nic struggled at times with the filming process.

“Talking about Josh’s birth and stuff that was hard. So hard. And that’s hard for any of us I think. That was a really raw, emotional time, and to stick a camera in your face and get you to talk about that… whoa!”

When I asked Josh about the challenges, he said that talking and thinking of questions to ask his dates had been difficult. His favourite part was the winetasting.

But Nic has been happy with the result and the experiences Josh has gained as a result.

“He had a lot of fun meeting all the people and it’s ended up with the desired result at this stage. It was good and, again, it’s entirely up to him. I saw it advertised…he’s had a girlfriend before, so he was looking for a girlfriend. I had explored all avenues, I had gone to IHC, he’s on Tinder – there’s a lady in Auckland that was trying to set up a dating website for kids with disabilities, but her family was having medical issues and it just didn’t eventuate. There’s one in Hamilton I think, I tried them, like I tried a lot. And then this popped up and I just said, this is what it’s all about, do you want to do it, and he said ‘hell yeah’. So he jumped full force in. So it’s all up to him whether he wants to continue.”

Twenty-two years into her parenting journey, Nic can look back with great pride and satisfaction at what she and the other UpsideDowns’ founders have achieved and are continuing to achieve, as well as at the young people her children have become.

It’s not every coffee group that turns into a national charity! She’s learned a lot and gained some tremendous experiences as a result of ‘having a Josh’. Her parting words of wisdom are valuable for any parent.

“Let them be who they are. Even if they’re acting weird or doing something different.

I look at some kids with their parents these days - not just kids with Down syndrome and they try and stop their kids from being weird or annoying or whatever. And you can’t with these fellas. That just squashes them. Just let them be and they’ll come into their own.”

Any viewer of Down for Love can see that Josh has well and truly come into his own: a confident, funny, exuberant young man with a job he loves, a girlfriend, friends, and workmates to talk to and have fun with, and a close family with him all the way.

Page 23

Down Write Brilliant

My Birthday Celebrations

By Mohit Mukesh Chand

On 29 May 2022 I turned 29 years old. Due to me having Covid that weekend, Mum and I decided to have my birthday party at a later stage.

On Saturday 18 June we went out to an Indian Restaurant called Punjabi Kitchen in Manukau for celebration dinner.

Page 24

My aunty baked me a gluten free birthday cake. Mum also bought a cake for my sister -in- law who had her birthday on that day.

I had a fabulous night with my family.

Down Write Brilliant

Inclusion Means…

By Andrew Oswin (STRIVE Member)

Inclusion to me means having a paid job just like everyone else.

One can be seen as a dumb person having no skills for the job and even if you demonstrate what you can do, for example having computer skills and preparing your own CV, some people believe that someone else must have done it for you.

It is only in the last 40 years that babies with Down syndrome have received support in early childhood and school.

Before that they lived in institutions so older people had never seen the abilities of people with Down syndrome.

In the future I want to be in the mainstream workforce. I enjoy the routine, the pay, and the people I work with.

People with Down syndrome need to be seen for their abilities. Public speaking and TV parts help this. Government paying for the first year and providing support when learning the job will make it easier for employers to see what we can do.

Page 25

Down Write Brilliant

Renee – Getting through COVID-19 My name is Renee, and I am 35 years of age. On Saturday, I found out that I got COVID. I felt very sad when I found out that I got COVID. And as soon as I found out, I needed to stay in my room, to protect my mum and family so they don't get it. It is good that I have a TV in my room because I can watch all my TV programs. It is also good that I have a phone to video chat and text with all my sisters and brothers.

The worst thing about having COVID is that it is very boring. Because I am sick at home, I do nothing but rest. I wish I was

Page 26

hanging out with my friends and riding my horse Magic and Kane. But unfortunately, I had to cancel my RDA (Riding with the Disabled) in Cambridge making me sad not to go horse-riding. I miss all the horses.

I have been eating yoghurt and that helps my sore throat. Also, Mum bought me a cough-lolly (lozenge), which helped my sore throat. I am drinking lots of water, and that is helping. Dad cooked sausages and vegetables last night, and I ate it all. Last night, I went to bed early because COVID made me feel tired. Today is Monday, and my cough is not as bad today. In my bedroom I have a door so I can go outside and get fresh air which is good and we live in the country so that’s good to have the peace and quiet and no traffic noise.

I got two vaccinations. All my friends should do a COVID test to stay safe. I miss my friend Caitlin from Te Awamutu because I want to hang out when I get better. We have been friends for eight years. Maybe we will go to a movie, have McDonald's, and have a photo together when I get better. But, for now, I will rest and spend time with my cat Simba.

Poetry Page

Poetry Page…

The famous English poet, William Wordsworth, had a daughter called Catherine who is thought to have had Down syndrome. She died in 1812, aged only 4, so it will never be known for sure, as Down syndrome wasn’t identified until several decades later, but various descriptions from the poet’s writings have led historians to concur this was the most likely situation. Catherine was particularly close with her father, and it was a devastating loss when she passed away, most likely of a heart condition which would have had a very different outcome had she been born today. This poem recalls the poet’s love for his daughter.

Surprised by Joy Surprised by joy—impatient as the Wind I turned to share the transport—Oh! with whom But Thee, long buried in the silent Tomb, That spot which no vicissitude can find?

Love, faithful love, recalled thee to my mind— But how could I forget thee?—Through what power, Even for the least division of an hour, Have I been so beguiled as to be blind To my most grievous loss!—That thought’s return Was the worst pang that sorrow ever bore, Save one, one only, when I stood forlorn, Knowing my heart’s best treasure was no more; That neither present time, nor years unborn Could to my sight that heavenly face restore.

Page 27

Me & My Job

Independence Collective, Changemaker Beer Product spotlight: Ginger Beer (non-alcoholic): “The Ginger Beer has got a really nice kick of ginger” – Neville changemakerbeer.com

Right: Neville Pugh hard at work

Page 28

T h e I n d e p e n d e n c e C o l l e c t i ve wa s formed by four adults with intellectual disabilities. Neville Pugh is the member of the collective with Down syndrome, and takes charge of the public speaking and promotional side of the Collective’s Changemaker Beer enterprise.

Me and My Job - Neville Pugh (37) I’m a beer brewer for Changemaker and I like working. I like working in a team and having really good views and comments.

When we first came together in June 2018, we all sat around in this room here.

We had a taste of different beers and we chose the one that we liked. It was George Duncan’s beer – the Pale Ale. We liked it, so we went back to Duncan and said ‘this is the beer that we want’. We named the beer the Neville Beer!

I like talking to people about beer because people in the community want to know what the beer is like and how we became a team of four to work together and to spread it right around the nation of New Zealand.

How we became a team of four – that’s a long time ago now! – we knew each other, I flatted with one person and then the other two were our friends.

The first time I ever had a beer was the Neville Beer, that was really nice. It tastes like Christmas.

It’s a great experience working with Phil, out there, going round bars, cafes… it’s just been great working with the old boy.

We’ve done a few events in the past.

The first one we did was the Kāpiti Food Fair, that was really awesome. We only had one beer. Then we re-branded to Changemaker, then we did Beervana with a beer, apple cider, and ginger beer.

What’s important for me is to make a lot of money! And I would like to be on the Rich List.

The best thing about Changemaker is working in a team. It’s been a great experience to learn beer, selling, sales, ginger beer, apple cider… and I would like to see us in the future to take it worldwide.

Him & His Job

Him and His Job - Gordon Cumming Independence Collective started in 2018, since then it’s become part of IHC. The four individuals that started it own the recipes for the products we produce.

That’s one of their businesses, and they get a royalty on every can sold. They live in the Kāpiti area and sell a lot of their products in the area, and they also get a commission on everything that they sell. This seller network will ultimately be spread throughout the country.

We’re also ramping up our online sales, for example last night we were in here mixing up some apple cider cocktails and videoing that which will become part of the online story.

Because the four individuals are part of supported living services, they’ve m a n a g e d to s e c u re s o m e o f t h e i r NASC [Needs Assessment and Service Coordination] funding to support them with the business. So Phil is employed

by IDEA Services which is part of IHC, to support them in the sales portion of their product. I am employed above that

by IHC as the manager of Independence Collective. IHC runs it cost-neutral and at the end of the year if there’s a profit then it’s distributed to all the members of the collective. As the Independence Collective evolves, we’ll look at other products and services as well.

Him and his Job - Phil Kāpiti Neville’s always lived here on the Kapiti Coast, he’s a local, and everywhere we go everyone seems to know Neville. I feel quite left out sometimes! He’s well-known in the community and that’s really neat because he’s a really social guy. That’s a huge advantage when you’re going out selling. He’s very well regarded in the community.

Neville’s been doing this for three or four years now and I just came on board. So I’m the learner, he’s the boss.

Discussion is very important in the team – we all need to work together. One thing that’s been really cool is the way that we’ve all been learning new stuff and growing as people, and I think that’s one of the great things about Changemaker. It’s about making a point too. We won’t settle for anything less than absolute respect from the rest of the community.

Neville brings a fantastic sense of humour to Changemaker, and a lot of enthusiasm.

He’s got a lot of drive and he has from the start – if there’s ever something going on then Neville wants to be involved. There have been tricky times with COVID and other things happening, but if we ever need something done then Neville’s always keen and ready to go. Very good with just getting stuck in, very motivated.

I would absolutely recommend working with someone with Down syndrome.

We’ve had a lot of fun. Neville’s just a great guy to work with – easy going, outgoing, just fun to work with. Bit of a hard man at times, but that’s good for me too. There’s time’s when I help him out, times when he sorts me out with things too.

Page 29

Senior

Getting ready for hospital visits As we get older, visits to hospital might become more frequent. The most common age to be in hospital is under the age of five, but after that the rate of hospitalisations goes down again until we get to about 45 years old, and from there it pretty much just keeps climbing! About half of all adult hospital discharges occur after the age of 60 – that’s when someone is admitted to hospital and then able to go home again.

The average stay is about six days, but nearly half of these visits are during the day only and include things like scans, blood infusions, biopsies, keratectomies, some dental procedures, removal of skin lesions, and other things that might not require an overnight stay but do become more common as we age.

Page 30

The good news is that they don’t have to be scary or unpleasant experiences. If we are well-prepared, and if we are respected and treated kindly and with dignity, then visits to the hospital can become – if not necessarily something to look forward to, then at least something that is simply a routine part of life, and not to be dreaded or feared.

A recent study in New South Wales in Australia, found that people with an intellectual disability such as Down

syndrome, only had their disability noted by hospital staff one in every five hospital admissions. This is very concerning, as understanding and recognising an intellectual disability can be crucial to someone’s care, just as acknowledging someone’s cultural background, religion, past traumas, or gender might make a significant impact on the quality of care, or be the difference between a positive hospital experience or a traumatic one. This in turn can affect whether or not a person seeks help in the future.

The Australian researchers, Adrian Walker and Julian Trollor, found that something called ‘reasonable adjustments’ can and must be made to healthcare in order to improve the experience for people with intellectual disabilities, and that they can ultimately lead to longer, healthier lives. According to Walker and Trollor, “reasonable adjustments include adjusting communication, providing extra time and support, and involving the person in choices and decisions.”

In Aotearoa, the Health and Disability Commission have a well-known Code of Rights that practitioners must abide by. The poster informing us of these rights (on the next page) will be familiar to most. The very first right is to be treated with respect, and it is from this principle that all the subsequent rights flow. Right Five, the right to effective communication, is the kind of reasonable adjustment that all health and disability workers should be making for their patients or clients with Down syndrome.

Right Ten is the right to complain, and if you feel that any of these rights have been breached, you can make a complaint to the Health and Disability Commission. Doing so might not only be helpful for you and your whānau, but could also make a difference for others in the future.

Health Quality and Safety Commission NZ Resources This entity has created a fantastic Easy Read resource to help someone with an intellectual disability to get ready for a hospital or other health care visit. This can be accessed by going to their website, clicking on resources, then going into their Resource Library and using the search function.

Here are some of the key suggestions in that document: • Write down a list of any questions you have for the doctor or health professional • Bring a list of any medications or supplements you take • Decide if you want to bring a support person or interpreter • Bring your My Health Passport if you have one • Share how you are feeling in the way that works best for you.

The Health Quality and Safety Commission has also created an Easy Read resource on getting ready to leave the hospital.

Some of the recommendations in this document include: • Ask questions of the doctor or nurse before you leave • Write down their details like name and phone number if you have quesions later • Make sure you know when you next need to see your doctor or come back to the hospital for a follow-up appointment • Write down a list of the medication you take – especially if your visit has lead to changes • Ask if there are any symptoms you need to look out for at home.

My Health Passport This is a booklet you, your doctors, your whānau, and any other relevant people can write in to keep track of your health and disability services. It isn’t a substitute for medical records but can be helpful to communicate with health professionals and other carers. You can download this from the Health and Disability Commission website (hdc.org.nz) or you can request one from the Commission or from a health and disability organisation.

Your

Rights Respect

when receiving a Health or Disability Service

You should be treated with respect. This includes respect for your culture, values and beliefs, as well as your right to personal privacy.

Fair Treatment

No one should discriminate against you, pressure you into something you do not want or take advantage of you in any way.

Dignity and Independence

Services should support you to live a dignified, independent life.

Proper Standards

You have the right to be treated with care and skill, and to receive services that reflect your needs. All those involved in your care should work together for you.

Communication

You have the right to be listened to, understood and receive information in whatever way you need. When it is necessary and practicable, an interpreter should be available.

Information

You have the right to have your condition explained and to be told what your choices are. This includes how long you may have to wait, an estimate of any costs, and likely benefits and side effects. You can ask any questions to help you to be fully informed.

It’s Your Decision

It is up to you to decide. You can say no or change your mind at any time.

Support

You have the right to have someone with you to give you support in most circumstances.

Teaching and Research

All these rights also apply when taking part in teaching and research.

Complaints

It is OK to complain – your complaints help improve service. It must be easy for you to make a complaint, and it should not have an adverse effect on the way you are treated.

If you need help, ask the person or organisation providing the service.

You can contact the local advocacy service on 0800 555 050 or the Health and Disability Commissioner on 0800 11 22 33 (TTY).

NZDSA Reource You can also find a series of videos in the NZDSA resource library on our website entitled ‘Creating a Positive Hospital Experience’. This could be a good option for those who prefer audio-visual rather than written information. There are videos about going to hospital, the dentist, and the GP, as well as summaries for caregivers and health professionals. Any member can view these resources and it’s free to join.

Page 31

President’s Pen

President’s Pen

By Kim Porthouse

Page 32

In this edition of CHAT21 the theme is dual diagnosis, meaning a diagnosis of Down syndrome and at least one other condition. We often think of dual diagnosis as meaning a diagnosis of Down syndrome and Autism, and this is one condition that around 20% of individuals with Down syndrome do have. However, for many members, their child with Down syndrome has a dual diagnosis of Down syndrome and something else. It may be one other or several other conditions such as visual impairment, hearing loss, hypothyroidism, ADHD, coeliac disease, leukaemia, or a heart or gastrointestinal defect to name a few. I’m sure this edition will hold something of interest for most.

In the last edition, I spoke about Brendon and how he has a dual diagnosis for Down syndrome and Autism. I also spoke of the NZDSA’s new resource and the online forum the NZDSA is hoping to foster.

It is exciting to see the development of these to help support those of us who live this particular journey. The new resource provides excellent information and an online forum has the potential to be wonderfully supportive, provide

interesting insights, and be so valuable to not only those of us who have been navigating this path, but also to those who are seeking information and support as they begin such a journey. There is a wealth of knowledge and experience in our community, so my hope is that this can be tapped into and shared so that the road is easier for those to come. The good news is that there is now more recognition of this particular dual diagnosis and more research informing both parents and professionals alike.

As mentioned above, for some, their family member may well have several diagnoses, just as my son Brendon does.

In my experience, they fortunately don’t all hit at once! For me, my journey included Brendon being born with a heart defect that required open heart surgery at 6 weeks of age. He still has leaky heart valves which require monitoring but, overall, he thankfully hasn’t looked back physically since the surgery. After that, it became clear by the age of two that he needed glasses, then, at around eight years he was diagnosed with coeliac disease, and at around ten years with hypothyroidism.

The journey to a diagnosis with Autism was a long one. Throughout his school years, it was more and more evident that he was Autistic, however, our paediatrician was unwilling to carry out an assessment or refer him for one. We finally achieved the diagnosis after he left the paediatric system. We didn’t need the diagnosis to know he was on the spectrum, so nothing major changed after the diagnosis, but I continued to seek it because I believed he would need it to open funding doors as he got older. To be honest, it was a tough journey once out of the paediatric system and if I have one piece of advice to anyone I would say if you suspect Autism, do what you can to have a diagnosis sorted while still within the paediatric system. But if you do end up out of it, don’t give up!

As parents we deal with each condition as it comes along and that just becomes an integral part of the person we love. I know for many, as it has done from time to time for me, it can all seem very overwhelming.

For me, it has been the connections and friendships I have made through the Down syndrome community that have informed, guided, and supported me through our various journeys. Although at times it can seem quite a mountain, what I have observed over my time with the NZDSA and through my own journey is that with each diagnosis, we as parents build our resilience and strengthen our advocacy skills and we also become a source of support for others. These things are powerful forces and serve us well across all aspects of our lives so I for one choose to see the positives.

Furthermore, a dual diagnosis doesn’t need to mean your family member won’t enjoy a good life – A couple of things that Brendon really loves to do (and comes within the territory of his Autism) is vacuum, sweep, and do dishes. Every time we went to a café, Brendon just wanted to clear the tables of dirty dishes and go out back and wash them. We have built on his interest in these things to build a purposeful life for him – for a couple of hours three days a week he goes to a café and does dishes – he loves it! Even though he needs a little support, he basically gets in and gets on with the job and he is part of the team and gets heaps of positive interaction from the others who

work there. He also has a job two days a week cleaning the local college woodwork and metalwork rooms – he sweeps and vacuums to his heart’s content and gets paid for it!

Now, more than ever before there is lots of information to be found on the NZDSA website and also there are new and growing opportunities to engage online through webinars, social media, and online chat and zoom meetings. So, I really encourage everyone to make the most of all these fantastic avenues to get information, grow your knowledge, and connect with others. Make being a member of NZDSA part of your strength, just as I have.

Page 33

NEO Notes

NEO Notes

By Zandra Vaccarino

Kia ora What does the NZDSA do?

In the previous edition of CHAT 21, I mentioned that in 2021 I started a series that focussed on answering a frequently asked question “What does the NZDSA do”? In this series, I have shared the following areas of foci for the NZDSA: • systemic advocacy as a means to i n f l u e n ce c h a n g e s i n p o l i cy a n d 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.

Page 34

This time, I thought I would focus on resource development. The NZDSA’s aim is to provide a hub of resources for our members, professionals, and the wider community as we want everyone to have access to relevant information across a wide range of topics and issues. The NZDSA’s aim is to provide resources that are both educational and empowering.

Creating resources that range from prenatal to aging is an ongoing task and it is important to also review and update resources so that they remain relevant.

In addition, as the needs of our community change, so too does the NZDSA strive to deliver resources to meet these needs.

Where we can, we access relevant resources developed by others instead of recreating resources, but often the NZDSA does need to step up and develop specific resources for our community.

The NZDSA provides resources like the New Parent Pack to our regions and maternity care professionals, and we distribute a variety of resources to our members, students, educators, allied health professionals, and other community organisations.

The NZDSA provides most resources in both online and hard copy formats. All our online resources are available to our members for free on the NZDSA website.

To access the extensive list of resources, just click on the resources button on the website menu. Remember, membership to the NZDSA is free.

On the next page I have included more details about our recently launched resource, Down Syndrome & Autism: A Dual Diagnosis, as well as the Wellbeing Series which is nearing completion.

The NZDSA also refers members to the extensive IHC resource library. Many of the resources in the library were donated by regional groups, so it is worth contacting IHC library if the NZDSA does not have a specific resource you are looking for.

We welcome suggestions on resources including tips sheets that you would like to see us develop. We are also aware that our members have so much information to share, so if you would like to be involved in resource development, please contact me neo@nzdsa.org.nz.

Down Syndrome & Autism: A Dual Diagnosis resource This resource is in a different format to our usual resource as it is a recording of a workshop. We received numerous requests to host this workshop but repeated lockdown restrictions made it extremely difficult, so when we had a small window of opportunity we recorded a workshop so that more people would have access to the valuable information.

We launched the resource online and hosted a Q&A session which we also recorded.

The aim of the resource is to provide an introduction to the dual diagnosis of Down syndrome and Autism.

The areas covered in the resource are • What is Down syndrome (DS)?

• What is Autism Spectrum Disorder (ASD)?

• Prevalence of a dual diagnosis of Down syndrome and Autism • Differential Diagnosis – Physical & mental Health • The importance of the second diagnosis • Diagnostic overshadowing • Screening for Autism The workshop is presented by Geraldine (Dina) Whatnell. Geraldine Whatnell is the Nurse Practitioner Mental Health and Addictions Service, Palmerston North Hospital. Geraldine brings with her nearly forty years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism) and mental health; alongside this, Geraldine has a wealth of personal lived experience – her younger brother Mark having a diagnosis of Down syndrome and now dementia.

Launch of an online Down syndrome and Autism Group The NZDSA will be hosting a quarterly online support group for whānau members who have children with Down syndrome and Autism. The focus of the online group is to connect, share, encourage, learn and empower each other. If you are interested in attending these online sessions, please email me on neo@nzdsa.org.nz and I will add you to the mailing list and we will advertise these meetings via E-news and social media.

Wellbeing Series We are planning to host two more online episodes in this series.

• Music Therapy will address how to use music in a way to connect and build relationships with people. It contains practical tips for parents and carers.

This episode will explore how music therapy can help with communication skills, movement, and basic motor skills. The presenter is Music Therapist, Anthony Manere, from Skylight.

• Attachment will cover healthy and unhealthy attachment styles, including how to increase healthy attachment.

Presented by Skylight Facilitator Roni Saul.

We will advertise these sessions in the NZDSA E-news and via Facebook National Volunteer Week, celebrated between the 19th and 25th June 2022, was an opportunity to honour the collective energies and mana of all our volunteers in the NZDSA.

Page 35

The theme in 2022 was a time to shine/he wā pīataata and volunteer week is a time to reflect/whaiwhakaaro on all those who give mahi aroha/volunteer for the NZDSA. It is an opportunity to recognise and celebrate all our volunteers. As we joined in Matariki celebrations, I am sure we all hope that it marks a fresh start; and that we enter into a time when we can once again dream/moemoeā and make plans for the future.

So thank you to all our volunteers - parents, siblings, whānau, young people with Down syndrome, community members, and supporters who willingly share their skills and talents and time to help our community grow stronger together and for creating spaces to dream and creating opportunities for others to shine in their community.

— Thank you to all our volunteers —

Page 36

NZDSA’s Annual Appeal July to August 2022 A very important event in the NZDSA fundraising calendar is the NZDSA’s annual telephone campaign. We are fortunate that Southern Stars, a Charitable Trust, supports the NZDSA and runs the campaign on behalf of the NZDSA. This year the campaign kicks off on Monday the 11th of July and runs through to Friday the 26th of August. If you receive a call from a Southern Stars team member, take a moment to thank them for supporting our community and if you do make a donation, thank you!

The funding the NZDSA has received from generous donors over a number of years has supported so many valuable NZDSA projects which include hosting the Annual Youth Development camp, hosting workshops for people with Down syndrome, supporting our Online Conference last year, and CHAT 21.

In addition, the past appeals have enabled the NZDSA to produce resources like the New Parent Pack, Plan for the Future, Turn the Page, Transition from School resource, Creating a Positive Hospital Experience resource, Play and Daily Routines, Dear Community, Dear Health Professionals, Couch Conversations, Golden Years and Down Syndrome and Autism: A Dual Diagnosis digital stories.

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@ n z d s a . o rg . n z a n y n o m i n a t i o n s f o r an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Hei konei rā Zandra

Our People

Show us your uniforms!

Lily Rommeril at Tae Kwon Do and boxing

Page 37

Māpura Studios – Changing Lives Through Creativity

By John Ferriss — Communications/Community Engagement, Māpura Studios

Page 38

Māpura Studios is a creative space offering inclusive, multi-modal art classes and art therapy programmes for people of all ages, diversity, and need, as well as the wider community. These include visual art, music, cartooning, dance, singing, therapy programmes, and online classes.

Māpura is te reo Māori for spark or light.

We were called the Spark Centre until 2015 when Telecom changed its name to Spark.

The tutors and office staff were fielding too many calls from people wanting their phones fixed so we chose a name more fitting for our unique art studio.

Diana MacPherson, who took over as director of Māpura that year, says: “Māpura Studios is a special place - a fusion of the creative arts, therapeutic process, of caring and sharing, acceptance and inclusion, of celebration, fun and friendship, advocacy, and a vision of equality. Above all, it’s

a place where you can come and be yourself.”

With Diana at the helm, we extended the visual art programmes to include music, comics, dance, singing, and poetry. The number of classes grew and now there are 22 different options every week. Located in Fowlds Park in central Auckland, we have established satellite groups from Orewa to Pukekohe, allowing for greater accessibility to a large number of people.

Our tutors and art therapists run classes for people of all ages, diversity and need; it’s an inclusive community.

Creative expression can be beneficial for people with Down syndrome. Creative arts, whether it’s painting, movement and dance, or music, can provide a voice for those who have trouble communicating verbally or with writing. It is also an excellent way of expressing feelings.

Left: Grace Tuhi Middle: Toby Lark My Grass Painting Right: Jason Fung Arrows

Art helps promote creativity and the imagination and it enhances hand-eye co-ordination. Very importantly, art is fun, social and relaxing.

We currently have more than 20 artists with Down syndrome in both our studio and online classes. Five students are in our singing class. We have found, and experts have made the point, that music can help improve self-esteem and social development, as well as improving memory and cognitive skills. Students with Down syndrome can also improve their speech and communication through singing, so Māpura Singing is a very important class.

M ā p u ra O n l i n e A r t i s t s ( M OA ) wa s developed as a response to the COVID lockdowns in 2020. The studio was closed so we had to take the classes online. There was also a need in the wider community for online art classes as many disabled people were further cut off and isolated at that time, and not all of them live in Auckland. MOA, funded by the Ministry of Social Development, aims to develop a community of disabled artists, no matter where they live in Aotearoa New Zealand.

Artists with Down syndrome are currently enrolled in the MOA classes Visual Art Online and Movement & Art. Memory Haddon and her daughter Grace attended the Experimental Art Club programme, designed and tutored by Catherine Thomson.

This is what Memory said about the programme: “A highlight for me has been watching Grace sit for a period of

time, listen attentively, developing her fine motor skills, exploring the effects of mixing colours together with water and creating beautiful art. It was a very relaxed environment and approach by the very experienced, compassionate, and understanding teacher. Watercolour is something she absolutely loves. Grace was engaged (most of the time), having fun and celebrated in class for her uniqueness as all the children were. Doing the class remotely allowed access to a social connection during the pandemic and has been good for Grace’s wairua. It allowed Grace to express herself in a creatively different way. It was therapeutic and calming and we highly recommend the class.”

2020 was a challenging year in so many respects, yet it opened a virtual online door for us to reach out to people with disabilities, no matter where they live in Aotearoa New Zealand, and embrace them in our extraordinary creative community.

Māpura Studios also runs a comprehensive exhibition and event programme. One of our terrific artists with Down syndrome, Toby Lark, regularly sells his beautiful and uplifting abstract paintings at our exhibitions and open days. I have one of Toby’s paintings on the wall; it’s a constant delight and a real treasure.

Page 39

IHC Library

If you are interested in any of these books or would like to know what else we 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

W h e n D o w n syndrome and autism intersect: DSASD for parents and professionals

By Margaret Froehlke Summary: "When Down Syndrome and Autism Intersect offers a thorough examination of the unique profile of a Down Syndromeautism spectrum disorder (DS-ASD) diagnosis and best practices for screening, treatment, and caretaking through the lifespan. This one-stop resource, the first of its kind, will greatly benefit families whose child is already diagnosed, and also those who suspect something more than Down syndrome. Professionals, too, will find information on how to distinguish DS-ASD from a diagnosis of just Down syndrome, and guidance on providing services for children and adults. The editors and chapter authors are seasoned parents, advocates, doctors, dentists, psychologists, behaviour analysts, nurses, educators, and financial planners [who] share their experiences and expertise." PUBLISHERS WEBSITE

Page 40

A practical guide to autism: what every parent, f a m i l y m e m b e r, and teacher needs to know

By Fred R Volkmar Summary: “Now in its second edition, A Practical Guide to Autism delivers an easy-to-follow and authoritative handbook on caring for children on the autism spectrum. Written by two of the premier US authorities on autism, the book walks parents, teachers, family members, and other caregivers through the most frequently experienced medical and behavioral issues exhibited by children on the spectrum. The guide also explains how to teach adaptive and coping skills, deal with sleep problems, handle sibling and family issues, and plan for future care into adulthood.” -- Provided by publisher.

IHC Library For your winter reading we are focusing on autism with a mix of biographies, a lovely book for children and some serious reading for families and professionals.

Don’t let it get you Down syndrome

By S.K. Dinning Summary: "Jamie has Down’s syndrome, autistic spectrum disorder and attention deficit hyperactivity d i s o r d e r. H e i s a beautiful, charming, and lovable little boy, but he is also how can we put this? - an exceptionally “challenging” child. In this hilarious, heartwarming, and unforgettable memoir, Jamie's long-suffering dad shares a selection of side-splitting and occasionally poignant stories from Jamie’s chaotic childhood. Find out why he can never go back to his local library, and why the staff at his local swimming pool flinch whenever he arrives.The author also offers his own witty take on all sorts of topics connected to the subject of disability, and parenthood in general. This book will be adored by anyone who has ever known someone with special needs, or has ever been a parent, or indeed, anyone who enjoys reading well-written and interesting comic memoirs." - BOOK JACKET This book is laugh out loud funny as well as very real.

The Neurodivergents : Autism

By I M Orkwerd Our names are Zuri, Mark, Aera & Jarafi and we’re Autistic!

That means we don’t connect or communicate with people the same way others do. It also means we experience the world differently and need different supports than other people. Come and see what it’s like to be US! The Neurodivergent series is about teaching kids all over the world what it means to be Autistic by sharing genuine and authentic Autistic voices.

Ten steps to Nanette: a memoir situation

By Hannah Gadsby Summary: Multiaward winning Hannah Gadsby transformed comedy with her show Nanette, even as she declared that she was quitting stand-up.

Now, she takes us through the defining moments in her life that led to the creation of Nanette and her powerful decision to tell the truth - no matter the cost.

Gadsby's unique stand-up special Nanette was a viral success that left audiences captivated by her blistering honesty and her ability to create both tension and laughter in a single moment. But while her worldwide fame might have looked like an overnight sensation, her path from open mic to the global stage was hard-fought and anything but linear.

Harrowing and hilarious, Ten Steps to Nanette traces Gadsby's growth as a queer person, to her ever-evolving relationship with comedy, to her struggle with latein-life diagnoses of autism and ADHD, and finally to the backbone of Nanette the renouncement of self-deprecation, the rejection of misogyny, and the moral significance of truth-telling.

Journal articleParents’ experience of having a child with the dual-diagnosis of Down’s syndrome a n d a u t i s m s p e c t r u m co n d i t i o n : a narrative analysis. By Katherine Lambert Down’s Syndrome Association Journal 141 Spring/Summer 2020: 22-24 Summary: It was previously considered that Down's Syndrome (DS) and Autism Spectrum Disorder (ASD) could rarely cooccur. However, research indicates variable but high rates of ASD in children with DS. This exploratory study explores how parents of children with Down syndrome experience and make sense of their child's additional ASD diagnosis.

Page 41

Contact Directory

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

Bev Smith

Maia Faulkner

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

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

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

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

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

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

Shelley Waters Treasurer treasurer@nzdsa.org.nz

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

Zandra Vaccarino

Linda te Kaat

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

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

Daniel te Kaat

Jess Waters

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

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

Paula Beguely

Pauline Marshall

Sandra Slattery

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

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

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

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

NZDSA Staff

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

Page 42

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.

Announcing the NZDSA Annual General Meeting When: Wednesday 19th October, 7pm Where: Online – Zoom Meeting ID: 851 1606 3562 Passcode: 099604 RSVP: By Friday 14th October 2022 to Linda te Kaat na@nzdsa.org.nz Closer to the time we will share the zoom link via Facebook and Enews.

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

— Call for nominations for the NZDSA national committee The NZDSA invites nominations to the NZDSA National Committee for zones 2 and 3.

Zone 2: Waikato, Bay of Plenty & Taranaki Zone 3: Whanganui, Manawatū, Gisborne & Hawke’s Bay The term for all positions will start at the AGM in October 2022.

The zones 1 and 5 representatives as well as the Treasurer are continuing their term of office on the National Committee.

The NZDSA will post all the information on our website or you can contact Linda na@nzdsa.org.nz and she will email you a nomination form and all the relevant information.

Please Note: • Nominations must be received by Monday 5th September 2022.

• Only financial NZDSA members may nominate, vote or be elected. Basic and Partner members are not eligible to nominate, vote or be elected.

• Prior to election or appointment, every nominee must consent in writing to be a Committee Member, complete a police check and certify in writing that they are not disqualified from being appointed or holding office as a Committee Member by the Rules, Election policy of the NZDSA, the Incorporated Societies Act 1908 and the Charities Commission requirements.

NZDSA Notices

The NZDSA has curated information on COVID-19 on our website The NZDSA attends MoH disability engagement meetings so please contact Zandra neo@nzdsa.org.nz if you have experienced difficulties in accessing vaccines.

Th e N Z DSA w i l l b e s h a r i n g t h e l a te st information available from the Ministry of Health and resources in our COVID-19 EBulletin.

Websites that have the latest and best sources of information • https://covid19.govt.nz/ • https://www.health.govt.nz/our-work/ diseases-and-conditions/covid-19-novelcoronavirus/covid-19-information-specificaudiences/covid-19-information-disabledpeople-and-their-family-and-whanau

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

Lottery Grants Board Bluesky Community Trust COGS: Christchurch COGS: Auckland City COGS: Coastal Otago COGS: Manukau COGS: Whangārei COGS: Waitakere City Holsworth Charitable Trust Eastern & Central Community Trust The Catholic Women’s League of Aotearoa New Zealand Ministry of Health Ministry of Social Development Joyce Fisher Charitable Trust Pub Charity Rata Foundation T G Macarthy Trust Lion Foundation

NZDSA Notices

Giveaway!

Win an Arc Assistant Learning Tower Help your toddler’s confidence grow by including them each day up at the kitchen bench with you. The more face-to-face time children have with their primary caregivers during their early years, the better their development.

To be in to win an NZ-made Arc Assistant, simply: Follow NZDSA’s and Arc NZ Baby’s Facebook or Instagram pages; Comment on the NZDSA Facebook competition post describing how you’d benefit from an Arc Assistant; Sharing the post is encouraged, but not compulsory.

Competition runs to the 5th August 2022.

Open to people living in NZ only and to those open to giving a review after use.

Special for the NZDSA Purchase the Arc Assistant 3 in 1 on the Arc NZ Baby website, using code: NZDSA and receive $15 off, and Arc NZ Baby will also donate $15 to NZDSA.

NZDSA Notices

Kids’ Art Competition Send your art in to be judged by Aotearoa’s most prominent fashion designer, Dame Denise L’Estrange-Corbet! Simply take a picture of your painting, drawing. sculpture or other art work and email it with your child’s name and age.

To enter, email info@upsidedowns.co.nz

by Friday, 22 July.

—

Casting call!

Down For Love Season 2 Attitude Pictures is currently casting Down For Love Season 2, a primetime television series for TVNZ 2.

Made in consultation with NZDSA, Down for Love focuses on people living with Down syndrome who are on a quest for romance.

With a sensitive and dignified approach, this show is a documentary series that highlights the strength and diversity of the Down syndrome community. If you haven’t seen it already, you can check out Season 1 on TVNZ+.

Attitude Pictures is an organisation with a strong history of providing respected and respectful health and disability content.

If you live with Down syndrome and you are looking for the love of your life, wanting to explore local dating options or learn the tools to woo your future partner - we would love to hear from you!

Email daniella@attitudepictures.com if you are interested.

Page 45

Our People

Hamish in his uniform before the Duke of Edinburgh Award Ceremony at Epsom Girls Grammar School

Page 46

Our People

Nivan keeping dry with his Spiderman umbrella

Page 47

Our People

Show us your uniforms!

Top left: Barker siblings in school uniforms Top right: Kieran Barker in school uniform Middle: Rory Stephen in Scouts uniform Bottom left: Emma Gilfoyle-Traub wearing the colours of Tieke House on Athletics Day at Matipo School Bottom right: Recordon siblings in their school uniforms