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CHAT 21

Journal About & For The New Zealand Down Syndrome Community

ISSUE 81, Autumn 2020 ISSN 11776323

Our People

Jade Burnett with Junior Breakers

A very happy Aunty Kelsey te Kaat meets her one-week old nephew William for the first time

Paige Goddard striking a pose

Emily Webber on a swing on a trip to WhangÄ rei

Contents

From the Editor

MANY MAGIC MOMENTS ON

Finally we can all get back to our normal life after lockdown. Sort of. Even though we have been allowed out of lockdown, life still seems different than before with many of us doing things a bit differently. The NZDSA was curious how our community experienced the lockdown and we are grateful so many shared their experiences in our survey. The most revealing part was that our children and families are resilient and most got through the seven weeks of home detention without too much trauma. Have a look on page 22 to find out some other interesting results. Some of the families have shared their stories and photos of their period in lockdown so that also makes some interesting reading that many of you will be able to relate to. In this edition, we have also decided to explain in more depth what the NZDSA actually does for the New Zealand Down syndrome community and why it is so important that you are a member so we can support and represent you more effectively. Sadly during the lockdown we missed out on World Down Syndrome Day but also on the planned launch of our wonderful new website. In this edition we will explain all the great resources and stories you can find but it is even better to go and have a look yourself. This edition also includes a wonderful story from Edward Bradley who travelled the world to connect with Down syndrome communities around the world and his views of New Zealand are particularly interesting. Finally, please join me in congratulating our own CHAT 21 designer Dan te Kaat and his lovely wife Rose with the arrival of their first-born son. Dan and Rose have been fantastic supporters of the Down syndrome community over many years, and the arrival of young William has also made NZSDA administrator Linda and Josh very proud grandparents.

DS WORLD TOUR

ATTITUDE AWARDS LOOKING FOR NOMINATIONS

WHY THE NZDSA WORK MATTERS

EXCITING NEW WEBSITE FOR THE NZDSA

HONOURING OUR VOLUNTEERS

WORKING AT SLAUGHTERHAUS

HAMISH PRESENTS AT SPECIAL OLYMPICS DUKE OF EDINBURGH

2020 HAS BEEN QUITE THE YEAR SO FAR

LOVING LEVEL 1

LOCKDOWN SURVEY REVEALS FASCINATING STATISTICS

GRETA COMES HOME FOR A LONG VISIT

XERVIER BUSY IN LOCKDOWN

IZZY ASHURST STARS AS LEAD ACTOR IN NZ SHORT FILM

IMPORTANT HEALTH RELATED ISSUES FOR FAMILIES TO CONSIDER

ME AND MY PET

OUR PEOPLE

In the last edition of CHAT 21, the story about the book We Can Make A Life incorrectly named Chessi Henry as Cherri. We regret the error.

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

Enjoy your read. Coen Lammers editor@nzdsa.org.nz

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

MANY MAGIC MOMENTS ON DS WORLD TOUR Earlier this year Edward Bradley, who lives in Spain, visited New Zealand as part of his D2020 World Project to connect with people with Down syndrome around the world and found we have more in common than we think.

Edward Bradley in Auckland

Everything started with one crazy idea: going on a world tour meeting people with Down syndrome. One day I thought about my sister Victoria, who has Down syndrome, and she often asks me if I see people with Down syndrome when I travel. And somehow, I always do. So she is always surprised to hear that there are people like her living in many different countries and who speak many different languages. So I started creating the D2020 World Project in October 2019. It is a project meant to raise awareness on Down syndrome around the world allowing anyone to share their stories. I created an email, contacted foundations not really knowing if any of them would answer, I started organising flights, made a logo, and on the 9th of January 2020, I left from Madrid to go to my first destination: Turkey. In Istanbul, I met with the Down syndrome foundation and it was a magical moment. After the first meeting of the tour, we all went to have lunch together and Robert, a young man with Down syndrome, was the one who had to guide us to the mall.

Edward visiting the DSD foundation in Istanbul

Welcomed by the Down Syndrome Federation of India in Chennai

We also met with another group of people with Down syndrome who had had a cooking class. It was very interesting to hear what the foundation was doing to help families and their kids and to see how they were trying to include every single one of them in society. They were preparing them to have a job, to take public transport by themselves, and it really reminded me of my sister who has been working for many years now. She also takes public transport to go to work. It was very interesting to compare what I am used to seeing and what they were doing in Turkey. The next foundation I met was in Chennai, India. I spent ten days in India, visiting New Delhi, Agra, Mumbai and Chennai. I have to admit that India is a very complex country and I have seen things that I wish no child or adult should ever have to experience. I couldn’t stop thinking ‘What would my sister do here?’, ‘How can someone with Down syndrome live here?’. It was very hard and it is true what they say about the country: you either hate it or love it. I think I didn’t understand it. However, meeting with the Down syndrome Federation of India is something that I will never forget. I spent a few hours in front of 70 parents with their children talking about my project and about my sister. I also had the opportunity to ask them questions and honestly, these parents were all so proud of their kids. Their foundation creates a place where they can all exchange and help each other. Dr. Surekha Ramachandran, the founder of the foundation is the most enthusiastic woman I have met and she is really willing to make a change.

Her energy is contagious and she had so many stories to share that I think I will be going back to India soon to learn a lot more about all the work that has been done. Unfortunately Coronavirus did have an impact on my project. I was not able to go to Hong Kong and could not meet with foundations in the USA or in the Bahamas. I did however manage to visit almost all the countries on my list and I have to admit that New Zealand really surprised me. The NZDSA was actually the first foundation to answer my emails at the end of 2019, so visiting the country really meant a lot to me. Unfortunately we did not get to meet NZDSA representatives, but I was amazed by how New Zealand really takes inclusion seriously. I had the chance to visit Auckland, Rotorua, Wellington, Christchurch and Queenstown, and everywhere I went I had the feeling that everyone could be who they wanted to be. I therefore automatically thought that someone w i t h D ow n s y n d r o m e wo u l d h ave m o r e opportunities in a country like New Zealand, even compared to Australia. I was amazed by the fact that New Zealand, which has a very good reputation here in Europe, is a country where being different is good. The country is a mix of cultures, traditions, from the Pacific, from Asia, from Europe, and there was a certain pride of that melting pot that many countries lack. The D2020 World Project is all about inclusion and about focusing on what unites us instead of focusing on what divides us as a society. Somehow, New Zealand really reflects that

Gardens by the bay in Singapore

Edward in front the mosque in Istanbul

mentality and I think it is something the country should be proud of. I really do. During this world tour I have also been to Thailand, Singapore, Australia, French Polynesia, Hawaii and the Bahamas. The goal was to take as many short flights as possible especially to see the similarities between each country. When I finished the tour I realised that when you connect the similarities it all makes sense. It is not hard to see that Istanbul has been influenced by some European countries. Tamil - a language spoken in south east India - strangely looks like Thai. Singapore is a perfect example of a mix of Asian and Western architecture. Tahiti and Hawaii have many religious and cultural similarities and in the Bahamas you find that unique Caribbean skin colour which comes from a mix of African and European ancestors. You realise that in the end, we all have something in common. It is almost weird to realise how much we focus on our differences instead of focusing on what makes us similar. The same sentence could apply to people with Down syndrome. I met many of them from different countries and I always felt like I was home. Instead of focusing on their differences

let’s focus on what we have in common. This world tour made me realise that many people want to help, people do actually believe in inclusion, but they do not know how to make it happen. The D2020 World Project is therefore a place where everyone can share their stories and learn from others. It is a place where we want to give voice to the people who have many things to say. It is also a place where brothers and sisters of people with Down syndrome can take the time and talk about their fears and share their stories that are often not heard. Our first motto is #StandOut because we want everyone to have a place to express themselves. Our second motto one is #BetterTogether because that is what inclusion is all about, working as one and realising that everyone has a place on this planet. If anyone would like to share their stories please do not hesitate to contact me ( ebradley@ d2020worldproject.com ) and together we can create a place where everyone can stand out and show the world what they can do.

ATTITUDE AWARDS LOOKING FOR NOMINATIONS The Attitude Awards are once again looking for Aotearoa’s unsung heroes leading the way in the disability community. Celebrating the excellence and achievements of New Zealanders living with disabilities, recognising athletes, employers, employees, young people and others who are game changers in their communities. Attitude Award nominations are open from now until Sunday 26th July. Tim Fairhall was one of the 2019 winners. Tim Fairhall claimed the Leadership Award for his work changing the legislation around Kiwisaver. Other winners were travel junkie Jezza Williams who won the Entrepreneur Award and social enterprise The Cookie Project, who took home the Attitude ACC Employer Award. Last year ’s Attitude ACC Supreme Award and Youth Spirit winner was teenager Cory Newman who was recognised for his standout achievements in the music industry. Seventeenyear-old Cory and his punk rock band Sit Down in Front erupted onto the local and international music scene in 2019 when music legend Jimmy Barnes invited them to be the opening act for the New Zealand leg of his recent international tour. Now in its 13th year, the Attitude Awards will present nine categories including Attitude ACC

Employer, Spirit of Attitude, Sporting Endeavour and Youth Courage Award. The awards will take place on Wednesday, 2nd December with a blacktie gala dinner at Auckland’s Cordis Hotel. For the 13th year running, ACC returns as principal sponsor. Other sponsors and supporters for the awards include APM Workcare, Barfoot & Thompson, Drake International and New Zealand Lotteries Commission. The Attitude Awards will be aired as an hourlong television special on TVNZ1 on Sunday, 13th December, with thanks to NZ on Air. The special will feature entertainment, winners and highlights from the evening. For nomination information and entry forms, visit http://attitudeawards.org The nine categories for this year’s awards are: Attitude ACC Employer Award, Spirit of Attitude Award, Sporting Endeavour Award, Special Olympics Award, Youth Courage Award, Impact Award, Employee and Entrepreneur Award, Support Superstar Award, and Community Champion Award.

Tim Fairhall

Supreme winner Cory Newman

NZDSA national achievement awards

WHY THE NZDSA WORK MATTERS By Coen Lammers

As the New Zealand Down Syndrome Association is heading into its 40th year, an effective and strong representation of the Down syndrome community is getting more important with each year. The NZDSA was founded in 1981, initially to support parents caring for a person with Down syndrome, but over the years this role has expanded rapidly to become a multi-faceted support and advocacy organisation. The volunteers and part-time staff that keep the wheels of the NZDSA turning are now recognised as key stakeholders in the most crucial discussions and decisions impacting on

our community at a national and international level. “We are recognised as an important parent organisation and a significant part of our work now involves stakeholder meetings that involve policy change and advocacy at Government level,” says Zandra Vaccarino, the National Executive Officer of the NZDSA. Zandra, President Kim Porthouse and other members of the National Committee are in regular contact with the organisations that play a vital role in the lives of people with Down syndrome, like the Ministries of Health, Education, Disabilities, and Social Development. “In some cases, we just keep advocating for years until they start listening to us,” says Zandra, who has been the face of the NZDSA at Government forums for the past 16 years. The NZDSA also has a long representation on the National Screening Unit to discuss the practical and ethical challenges around increased screening for Down syndrome, while Zandra also works with Human Rights Commission, the Health and Disability Commission and the Disability Transformation Steering group. STRIVE self-advocate Andrew Oswin and committee member Averill Glew also represent a s t ro n g N Z D S A vo i c e i n t h e D i s a b i l i t y Consumer Consortium, which represents all key stakeholders in the disability sector. “The NZDSA has a big voice in all these advisory and decision-making bodies, but it is vital that we represent everyone in our community. We

STRIVE and self-advocates

encourage every person and family with Down syndrome to become an NZDSA member, so we know exactly who we represent in those discussions,” says Zandra. “And the more people we represent, the bigger our voice is and the harder it is for any agency to ignore us.” Unfortunately, the Government does not keep any comprehensive records of people with Down syndrome in New Zealand, who they are, where they live or what challenges they might be facing, individually or collectively. “We only have records of how many children with Down syndrome are born in hospital, which has been roughly between 52-58 each year, but after that it becomes guess work. So we are really working hard to build our contact list, so we can find out exactly where our community is and what we can do to support them. “That’s why signing up to the NZDSA through our website (www.nzdsa.org.nz) is so important, so we can understand what you need and give you the information that is relevant to your situation.” Zandra admits the limited resources of the NZDSA makes it difficult for the national body to provide advocacy support on an individual basis when parents need support dealing with a school, a doctor or an agency, but the association will know where families can get local support. “We may not be able to go into a school with a parent, but we provide them with local

contacts in our own community, a regional representative, or sometimes IHC. “In many cases, however, we are able to provide parents with tips and strategies to upskill the parent, so they can deal with the issues themselves. Being able to empower a parent is one of the most powerful parts of our job.” The NZDSA was created to support parents, which is still at the heart of their mission, but these days the focus has also shifted to empowering the person with Down syndrome and teach them how to advocate for themselves. The NZDSA organises regular self-advocacy workshops in which its members receive specialist training to teach them about their rights and how to advocate for their own rights, as well as others. The STRIVE group of self-advocates includes a six-person Advisory and Leadership Group who provide invaluable advice to the National Committee, as well as nine other self-advocates who are gaining new skills to potentially move into leadership roles. “These people are the most powerful ambassadors of our community. They are all confident, articulate and go out in their own communities to represent the wider New Zealand Down syndrome community,” says Zandra. Many of the STRIVE members have also taken part in the annual NZDSA youth camps, either as participants or as a support person. The Youth Camp at the Sir Peter Black Marine

The first NZDSA ball

Education and Recreation Centre in Long Bay is an annual highlight on the NZDSA calendar. “Each year, the NZDSA invites young people nominated by each region to join a weekend of adventure and fun,” explains Zandra. “At the camp they make new friends, learn new skills and build their confidence.” The Youth Camp is supported by volunteers from each region, which enables these regional representatives to share experiences and become part of the national network. The camp alternates between a camp with more independent young people who are happy to travel without their parents, while every second camp focuses on young people with higher needs who require regular support from a caregiver. “But we really want the camp also to be a real respite weekend for those parents who are on duty 24/7. Where possible, NZDSA volunteers take over the care of the youngsters during the activities, so the parents can relax, go out for a coffee or wine, and participate in other activities for the parents, as well as sharing experiences with other parents who have children with very high needs.” Aside from the work by the NZDSA, the Down syndrome community is also fortunate to have strong local support groups in many regions that provide boots on the ground for support, advocacy, social contacts and information. The NZDSA committee is made up of representatives from the six zones, who liaise

with their own regions and representatives from the local Down syndrome groups. The committee has regular meetings, in person or by Zoom, to discuss current issues the NZDSA needs to be involved in and to receive feedback and ideas from the regions. Zandra says that the interactions are a two-way street, where the NZDSA in some cases refers inquiries to the regions, while in other cases the regions contact the NZDSA to get the support they need. “Our National Administrator Linda te Kaat takes many of those calls. We call her Detective Linda because if she does not have the answers, she will keep digging until she has found the best person or organisation to help out,” laughs Zandra. “And we don’t just give out a number, but we will contact that organisation first to find out if they are the best people to help our members.” Linda te Kaat also manages a large pool of resources that are available for NZDSA members, like Numicon kits, educational DVDs on several themes, and distributes the new parent packs for new parents of children with Down syndrome. Aside from its advocacy and information roles, the NZDSA has been organising or has been part of numerous workshops on a host of issues like health, education, ageing, self-advocacy, employment or human rights. “In some case they are just for our community, but in many workshops we work closely with

NZDSA staff meet with regional representatives

other organisations in the disability sector. We think it is important for us and our members to build communities of people who face the same challenges,” says Zandra. Those connections are not just restricted to our shores, as the NZDSA also collaborates with international groups like Down Syndrome International (DSI) and Inclusion International. The NZDSA staff are in regular contact with their key counterparts overseas, especially in Australia. The NZDSA staff take part in virtual conferences, including the Asia Pacific Down Syndrome forums, and if the NZDSA is able to secure funding support, they attend the World Down Syndrome Conference every two years in person, to share the latest research and developments with the regions and to continue building international connections. In the lead-up to World Down Syndrome Day, the NZDSA works closely with DSI to support the annual theme the international community chooses for that year. “Most years we have created a special video o n t h at t h e m e t h at we d i st r i b u te to t h e community, to media and through our social media platforms to celebrate people with Down syndrome and raise awareness around New Zealand,” says Zandra. T h e N Z D SA Fa ce b o o k p a g e h a s a l a rg e f o l l ow i n g , i n s i d e a n d o u t s i d e t h e D ow n syndrome community, but is just one of several communications tools it uses to communicate

w i t h i t s ow n f a m i l i e s , a s we l l a s o t h e r stakeholders like educators, Ministries and health professionals. “The NZDSA recognises that communicating and connecting our community is the most important part of our role, so we have invested in a part-time communications advisor, who is also the editor of our quarterly journal CHAT 21,” says Zandra. “He works closely with our Social Media Officer to connect through social media and put out a regular E-newsletter to all our contacts, as well as looking for media opportunities for stories around Down syndrome,” says Zandra. She explains that the NZDSA uses those communications platforms to share their own news, but also support the regions by promoting regional news and events by sharing it with all their contacts. “All the different regions are doing an amazing job helping our families, and are often best placed because of their local connections, so our role is to provide a connection between the regions, support them where we can, and represent them at a national level. “But we are only as good as the feedback and support we get from everyone in the regions. “So we are working hard to find and connect with every family in New Zealand, be more visible to our community, so we can represent them more effectively.”

EXCITING NEW WEBSITE FOR THE NZDSA By Coen Lammers

During the recent upheaval caused by the COVID-19, many events, including World Down Syndrome Day were severely affected. As people were trying to get their heads around the day-to-day life in a bubble, some new developments also slipped under the radar, including the launch of the wonderful new website of the New Zealand Down Syndrome Association. Over the past few years, the NZDSA created a vision for a modern website to suit the needs of our community and to display the wealth of resources and information available to the New Zealand Down syndrome community. We had hoped to give the new website the attention it deserved with a large launch event that would attract the attention of our members and the wider community. Unfortunately, the launch was overshadowed by the COVID-19 lockdown, so we thought it might be helpful to highlight the sections that might be of interest to our community or anyone involved in their lives. During the planning phase, it became clear that for many people, the website would be the first port of call, to get their first information about Down syndrome, especially for new and expecting parents, as well as their whÄ nau and friends.

The first section of the new site, provides extensive information on Down syndrome, for all the different stages of life and includes specific sections for parents, family, friends and professionals who are looking for more information. Thousands of health professionals, educators, employers or caregivers support people with Down syndrome in our community every day and the new NZDSA website aims to provide them with background knowledge and explain the positive (or negative) impact they could have on their lives. The website has an entire section for people with Down syndrome where they can find stories about their peers that might give them new ideas about what they can achieve and get involved in, or give them some new information about finding a job, playing sports, making friends, or setting up a flat. The section also includes more background on STRIVE, the self-advocacy group of the NZDSA that provides input to our National Committee and for government agencies that work with people with disabilties. The website showcases a wide variety of inspirational stories of people with Down syndrome from all ages, leading meaningful and

exciting lives, as a work-mate and employee, as a friend or a partner, as a flatmate, as a school friend, as a sports star, as a business owner or as an artist. One of the most important sections of the website focuses on support that the NZDSA provides and where you can find help in your own regions. That section also includes links for local Down syndrome support groups, other agencies and key contacts in your regions that help whÄ nau with questions around health, benefits, education, employment, housing, sports, arts and advocacy. We hope the website can be a one-stop shop for anything relating to Down syndrome, but we are aware that this is only the starting point. We want to grow and enhance the website to truly reflect the New Zealand Down syndrome community so we welcome any feedback, suggestions and questions that will enable us to add more layers or make changes to improve existing content. We hope you will find the new website useful, easy to navigate and interesting, but donâ€™t hesitate to contact us with your suggestions.

NEO Notes

HONOURING OUR VOLUNTEERS By Zandra Vaccarino

Kia ora COVID-19 has dominated the news and impacted on everyone and has meant changes in all aspects of our lives. We certainly have all developed resilience during this time! I think we have all found ways of adapting and navigating challenges in our personal and work lives. Despite the challenging times of lockdown, it seems that many people have exited Levels 4, 3 and now 2 having gained some worthwhile perspectives and I think some of us will try to hold onto new habits that we established, or continue to enjoy new rhythms we have developed. However, I am aware that for some families and whānau, including ours, it has meant a greater demand on personal resources as we stepped into the gap to meet the needs of our whānau as natural supports, paid supports and service providers were no longer able to provide the usual support or activities during lockdown. I am also aware that some families and whānau chose not to have support people included in their bubble because of higher risk potential. Whilst we had anecdotal information of how our community was coping in lockdown, the NZDSA thought it would be valuable to circulate a survey so that our advocacy efforts would accurately reflect the experiences of our community during lockdown. Thank you to everyone who participated. Our editor has included the survey results in this edition of CHAT 21 which makes for interesting reading. I think the key factor highlighted in this survey, which isn’t surprising, is that family and whānau are the ones who continue to provide support in crisis and that whilst service providers or support people can opt not to provide support, this is

not an option for families and whānau who are expected to step up and provide all the care and supports that are needed. One positive outcome of lockdown was that the Ministry of Health recognised the need for more flexible use of funding and the usual constraining criteria were removed which lead to families and whānau demonstrating creative ways to address needs while upholding the principles of enabling good lives. I have heard parents say that if greater flexibility of funding was allowed during lockdown, then it should continue after lockdown and that the momentum cannot be lost. Therefore, the NZDSA will continue to advocate at a national level for disabled people and their family and whānau for this to continue and for more choice and control on how they use disability funding. You might be wondering what impact COVID-19 had on the NZDSA. We are fortunate that the NZDSA continued to operate throughout the lockdown levels and restrictions. Our mailboxes were flooded with COVID-19 information that was overwhelming at times! Whilst all the information was informative, not everything was pertinent to our community, so the NZDSA team decided to filter relevant and key information and share this with our community via our newly launched website. We also shared information via Enews and other social media platforms. Unfortunately, we do not have email addresses for all our members, so we are aware that some people may not have received information. So, please go to the NZDSA website and see that your information is current. As we moved to Level 2, the NZDSA recognised that some parents had concerns about returning

to school so we contacted the Ministry of Education to ask if they would host a webinar to address questions. The Ministry agreed and opened the session to the wider learning support community. I joined the session and noted that almost 500 people attended. I have enjoyed the opportunity to link into a range of national and international zoom meetings or webinars addressing a number of topics, which have also included opportunities to advocate for issues that our community is facing. The NZDSA had a number of workshops scheduled during lockdown which we moved online where possible, and we have rescheduled other workshops. We also hosted zoom meetings for self-advocates and parents who had workshops scheduled; and we have had regular meetings with our STRIVE members, as well as NZDSA committee meetings. I would urge you to keep looking online to check what workshops have moved as there are opportunities to engage in national and international training that would not usually be accessible.

National Volunteer Week 21 June to 27 June The National Volunteer Week is an opportunity to acknowledge and celebrate the collective contribution of all our volunteers who enrich the Down syndrome community in Aotearoa New Zealand! This year’s theme was ‘Te Hua o te Mahi Tahi - The benefit of working together’. I think if we reflect over the past 39 years since the NZDSA was established, we could list significant benefits of working together to support families

and whānau and people with Down syndrome, to create greater awareness of Down syndrome, and to lobby for policy change. Working together is the only way to continue to bring change for people with Down syndrome. During the COVID-19 response, we saw the power and potential of volunteering. Mahi Aroha and social action shine through at times when our community and the wider communities were stretched and challenged. Working together as we come out of COVID-19 will make our community stronger, and more than ever, our volunteers will continue to play an integral role in strengthening and developing the Down syndrome community. Thank you all our volunteers - parents, siblings, whānau, young people with Down syndrome and supporters! You are valued and your contributions will help to shape the world we want to live in, now and into the future!

NZDSA’s Annual Appeal May to July 2019 The NZDSA’s annual fundraising telephone campaign took place earlier this year due to COVID-19 but we appreciate that Southern Stars, a Charitable Trust, was still able to run the campaign on behalf of the NZDSA despite the challenge of working differently during lockdown. This year the campaign kicked off on the 25th May and runs through to the 3rd July. The campaign will support the Youth Development camp and all the related costs of publishing CHAT 21. 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 that the NZDSA has received from

NEO Notes

Vinne, Rachel and Zandra

generous donors over a number of years, has enabled the NZDSA to host camps and workshops for people with Down syndrome as well as enabling the NZDSA to produce resources like our New Parent Pack, Plan for the Future, Turn the Page, Transition from School, Creating a Positive Hospital Experience, Play and Daily Routine, Dear Community, Dear Health Professionals and the more recent #We Decide digital story.

Rose Awards We 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 nzdsi@extra.co.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

General Elections – 19th September If you have received CHAT 21 for a few years you will know that I will always urge everyone to vote. Why? My response would be: for our children! Your voice and vote can make a difference. Your vote has the power to determine which political party will govern New Zealand and drive policies. So it is important to consider which political party you believe will implement policies that will facilitate people with Down syndrome to enjoy full citizenship rights. It may require a little research to identify each parties’ policy on key issues for the disability sector, but we hope to share information via our social media platforms, so please sign-up for the NZDSA Enews (please email hello@nzdsa.org. nz) so that you can be added to the distribution list, or become a friend on the NZDSA Facebook page. In New Zealand people with Down syndrome enjoy the right to vote. The Electoral Commission usually provides resources to assist people with Down syndrome to participate in the election. To find out more you can visit www.elections.org.nz Hei konei rā Zandra

Me and My Job

John vacuuming the floors

Manning the taps at Lighthouse Brewery

Sitting in the big boss chair

WORKING AT SLAUGHTERHAUS By John Pike Where do you work? Right here at Slaughterhaus â€“ the graphic design company where CHAT 21 is produced. How long have you worked here? 11 months. How many hours each week? 6 hours. What jobs do you do at your work? I do the cleaning in the design studio and in Lighthouse Brewery next door. How does it make you feel that you have a job? It makes me feel good.

What do you like the most about your work? Having a beer at Lighthouse Brewery after work on Friday and getting paid. What donâ€™t you really like about your work? Cleaning the floor. Do you have any other paid or volunteer jobs as well? I help in the garden at Hohepa. What would be your dream job? Beer taster.

Down Write Brilliant

Speech Practice

HAMISH PRESENTS AT SPECIAL OLYMPICS DUKE OF EDINBURGH By Hamish Gilbert

Down Write Brilliant

Jemma and Hamish

Hamish gives his presentation

I recently was invited to be a guest speaker at the launch of the Special Olympics Duke of Edinburgh Club, held at the Pelorus Trust sports house in Petone, Wellington. I was one of the presenters alongside the CEOâ€™s of the Special Olympics and the Duke of Edinburgh. I had written a speech and prepared a slide show, as well as a PowerPoint about my Duke of Edinburgh experience from Bronze through to my Gold award, which I am working on at the moment. It was the first time I had done any public speaking in front of people I did not know about 70 participants in the room. It was quite nerve wracking to start with, but I managed to get a sneak preview of the venue the night before, which gave me the confidence to stand up and delver my 25-minute presentation. In my presentation I wanted to encourage other Special Olympians to get more involved in the Duke of Edinburgh and to show them what is possible.

I wanted to show others that getting involved was about challenging yourself and stepping outside your comfort zone, but it was all good fun. Just because you have a disability, it does not mean you canâ€™t be successful - the Duke of Edinburgh Award Scheme is achievable for any one. The whole experience was a huge opportunity for me to show what people with a disability can do. The setting up of the club is really exciting as it will support more people to get involved in a variety of activities. It will make the award more accessible, connecting people together who want to participate, and create friendships along the way. It was tough for me doing my Bronze, Silver and Gold awards on my own, but it was fantastic to be able to share my experience and to help to motivate others to give it ago. I am hoping to be able to support others achieve their awards and be involved in setting up a club in the Hawkes Bay.

Down Write Brilliant

2020 HAS BEEN QUITE THE YEAR SO FAR By Andrew Oswin

This has been quite a year so far for me. My father and I attended the Waitaki Summer Music Camp Concert where my mother had been performing playing the flute, and I enjoyed it very much. The orchestra members all played and performed at their very best. I had attended this Summer Music Camp before when I had been a teenager. It is where I have made friends in many years. As you read in the last Chat 21, I also got to be the ‘Master of Ceremonies’ for the Special Olympics Canterbury Awards, Dinner and Disco Night. I attended the Upper South Island Regional Council in Murchison earlier this year with my father who came as my mentor. This is part of my role as a Global Messenger. I got to meet, socialise and make new friends with other athletes who came from different parts of the upper South Island. We all learned how to connect, communicate, network, inform, be a good leader and role model to our athletes in our region and how Special Olympics New Zealand can do better to help us in the future. I am enjoying my voluntary work at the Harakeke Club where I go on Mondays. It is a day care centre for pensioners who suffer from Memory Loss, Alzheimer’s Disease and Dementia. I help in the kitchen putting dishes in the dishwasher, dishes drying, setting tables for lunch, assisting in the activities and entertainment programmes when I sometimes get requested to play the piano. I have been volunteering for the Harakeke Club for 11 years. I e n j oy my p a r t - t i m e j o b a s a R e g i o n a l Administrator for Parent to Parent Greater Canterbury where I do clerical duties. Some of the work involves checking updates, checking emails, entering information to update the Parent to Parent’s Database to send out

Andrew Oswin

journal magazines and email scanning using the photocopier. This is my fifth year working for Parent to Parent Greater Canterbury. I was working from home during Covid 19 on my work laptop which is provided for me by my work. World Down Syndrome Day had to be cancelled due to COVID-19 and I know that this had affected everyone in the Down syndrome community, and we are hoping to celebrate this at a later date. This deeply saddened the whole of our beloved country New Zealand which I care and love. We do need to take a moment to 'remember the people' who died from this pandemic disease and this has happened across our world. Andrew Oswin, STRIVE Editorial Committee and Down Syndrome International Member

President's Pen

LOVING LEVEL 1 By Kim Porthouse Hi everyone, Isn't it great to be at level 1? I hope you got through lockdown without too many issues for your loved ones. For us, Brendon got a bit of cabin fever and this was exhibited by him being a bit grumpier than his usual general happy-go-lucky self during the last few weeks. With his heart condition, he was in isolation from when the government announced all high-risk individuals should stay home, so his lockdown lasted from mid-March right through to the start of level one. He is very glad and enjoying to at last be back at most of his work opportunities and activities. For me, as a midwife and an essential worker, it felt that not much really changed - I still went off to work, there were of course some increased hygiene precautions but mostly the work was the same. It did seem very strange not having any visitors in the hospital and I certainly felt for women that were unable to have their family around at such an important time of their life. I actually found I enjoyed the quieter roads and not having the extra running around to do! For our family COVID-19 also bought about an opportunity. My other son Chris and his fiancee Nikita decided that level 2 brought about the perfect chance to have a small intimate wedding. So after 5 years of engagement and with just two weeksâ€™ notice they organised their wedding and were married on the 30th May with just 25 guests (15 guests had just 5 daysâ€™ notice after the change in gathering size was announced!) It turned out to be a lovely day that we all enjoyed immensely including the very happy couple. Brendon just absolutely loved the occasion and as he usually chooses to be non-verbal, it was a special moment when the bride arrived and clearly for all to hear he said "Awesome Nikita" with both thumbs up and a huge grin! On another note, I hope you all have taken the chance to check out our new website which was

Brendan Porthouse, with brother Chris and his bride Nikita

launched for World Down Syndrome Day and registered your membership, you all should have received an email at the time with member login details. If you didn't receive an email it means we donâ€™t have your up-to-date email address, please ring Linda on 0800 NZDSAI (press 2) to update your details and get your log-in. It's very exciting to finally have this up and running and be able to provide easier access to a much wider range of up-to-date information. Well with winter now upon us, I encourage all to keep up with the hand hygiene and help to keep not only COVID-19 at bay but also those normal winter colds and flu's. Keep warm, keep well.

LOCKDOWN SURVEY REVEALS FASCINATING STATISTICS The NZDSA recently conducted a survey to find out how people with Down syndrome experienced the COVID-19 lockdown period. We want to thank the 90 families who took the time to respond to one or all three surveys. Editor COEN LAMMERS has looked at the responses. The recent COVID-19 lockdown was a forced experience shared by all New Zealanders, but for every family those weeks had a different impact. People with Down syndrome experienced the weeks without their usual routines differently than others, as they may not have always been able to fully understand the threat the virus was posing to our community. For their families, the challenges were quite different and for many whānau, having to care for their families, including a child with special needs without the usual routines and support, was not always easy. Most of us however know that our children, and our families, are a lot more resilient than many give them credit for, and the NZDSA survey proved just that. One of the most positive statistics from the survey showed that 90% said that their wellbeing had been the same as usual or even better, while 10% did not feel so good and one parent had been feeling very badly during lockdown.

When asked about their child with Down syndrome, 90% of the respondents said that the well-being of the child had been the same as usual or better, with 10% feeling that their child’s wellbeing had been negatively affected by the lockdown. A few parents reported that lockdown caused anxiety in their household about the global pandemic, about their jobs, and in cases when their child was particularly vulnerable to any virus. The overwhelming majority of parents spoke about the quality time with their family and how they enjoyed life slowing down a bit, and to reconnect with other members in their household. “If this is what retirement is like, bring it,” wrote one parent. While most children coped really well, almost all respondents mentioned how much they missed their friends. On the flipside, most children really enjoyed spending so much time with their parents and siblings, especially the older siblings who moved back home during lockdown. The biggest challenges mentioned by parents were boredom and change of routine. Most of the children rely on their weekly routines, so many parents invested a lot of energy into creating new daily and weekly routines to give their children some new stability at home. The universal love for electronics was a handy fall-back and many children enjoyed a lot more screen time during lockdown, but parents struggled to wean them off the devices.

Parents also reported that their children struggled with social distancing, so recreationally outings could be a challenge. This would be specifically tricky if they would bump into friends or neighbours and the children were not able to touch their friends. For the parents, getting no breaks and no support, day after day, was exhausting and a quarter reported to feel lonely during lockdown. “He was glad lockdown was over because he was sick of me being the teacher,” said another parent. Many of the respondents shared their frustration of not being able to fully explain the nature of the pandemic and why they had to stay at home. Some young people were particularly affected by not being able to see their friends or family during lockdown and were confused what was going on. “He couldn’t see his grandparents for so long that he thought they had died!” wrote one parent. Most parents managed to help their child comprehend the situation by talking about bugs and the importance of washing your hands, which seemed to make sense to most children. Only a small number of respondents had to deal with behavioural issues triggered by lockdown, including some anxiety and aggression, but in some cases that settled down as the new reality set in. Some parents reported that their child had some toileting accidents, while others mentioned that sharp increase of screen time caused some “cold turkey” aggressive reactions when parents started to reduce the screen time. One parent reported that their child decided she “was never going back to school”, but that the teachers made the return so exciting that she was keen to return. From the families who responded, the percentage of people with Down syndrome in the home included 19% pre-schoolers, 20% primary school age, 26% high-school age and 35% between 2145 years old. Only 2% were over the age of 45. Of those children, 93% lived at home with family while only 2% were in supported living, 1% living independently and 3% in residential care. Some of the parents who were separated from their child during lockdown reported that it was “heart-breaking” not to be able to visit their loved one, but others reported that virtual meetings really helped to ease the separation anxiety.

Services and information Obviously, lockdown hugely impacted on the normal services that were able to be provided and 75% of parents reported that their family was impacted, with 55% getting little or no service at all.

Emily Webber Indoor camping during lockdown

Even though parents had to cope without their usual services, there was a universal understanding that the pandemic was an extraordinary situation, so the number of parents unsatisfied with their services only increased slightly. Many parents were disappointed that they were not contacted more often, or at all by their usual service providers, including more interaction with teacher aides, speech therapists and OTs through Zoom calls. Most caregivers however were very relaxed about being left to their own devices and understood that any physical interaction would create health risks. From the 90 respondents only one was unable to access essential services or groceries and 11% said they could only get limited supplies. Most people, 65% got their groceries at the supermarket, 31% shopped online while 15% used the priority shopping option. As far as access to PPE was concerned, 27% said they could not get access, while 45% did not need to. Of the 27% who did have access, the vast majority (68%) purchased it themselves, 7% received them from their service providers while 24% got them

through their IF Host. When asked about information about COVID-19, 85% was happy with the level of information they received while 15% would have liked to have seen more. The Ministry of Health was the main source of information (79%) while others relied on information through their family networks (43%). The NZDSA (24%), the Ministry of Education (29%) and MSD (15%) were also mentioned as good sources, as well as support groups (31%), providers (21%) and funding agencies (27%). Being stuck at home, it was no surprise that social media and websites were used by 70% of families to find key information. Families also received direct information through emails and newsletters (20%) or by talking to family and friends (31%).

Education The survey revealed that 52% of the parents provided some home schooling for their child with Down syndrome. Of the remaining parents, 18% had not done any home schooling, while for 30% home schooling

Max Cussell, 25, showing off the letterbox he painted during lockdown

was not relevant. Of those parents trying to continue their child’s schooling from home, about a third found it difficult or stressful while two thirds said they managed without too much stress. Among this group, around 20% felt that the schools had not provided them with appropriate material or support to learn from home. About half of the children who lived away from their family came back to the family home for lockdown. While many parents had no concerns going back to school, more than half of the respondents were and are still extremely concerned about how exposed their children would be at school. Many questioned their schools’ social distancing and hygiene policies, especially in learning units and whether their child would be able to adhere to those rules. One strong sentiment coming through the responses was universal confusion among parents whether their child with Down syndrome did or did not fall into the high-risk category under Level 2 or 3. As a results several parents kept their children at home for weeks, even when all schools were back

to their normal routines. “She hugs people so we decided to keep her home,” wrote one parent, while another parent kept their child at home for eight more days due to medical concerns. “We were extremely anxious and still are.”

New opportunities One of the most interesting revelations of the survey was that our families and support services discovered that the digital age is offering wonderful new opportunities to connect. Parents enjoyed that they were able to talk to their GP, speech therapist or teacher through their laptop and one wrote that “We will continue to do speech therapy through Zoom.” Another parent reported that they will continue with online learning when their child is sick at home in the future. With a higher demand for digital services, a lack of access to good internet or appropriate digital devices proved to be a huge source of frustration in some households.

Lockdown Diary

GRETA COMES HOME FOR A LONG VISIT By Robyn Dixon

Greta Dixon lives by herself in a small apartment.Â As soon as lockdown seemed imminent my husband and I picked her up and took her to stay with us in our two-bedroom unit in the Tauranga CBD. I had to tell her about the bad germ called COVID-19 that meant that the Prime Minister had said that we all must stay home safely with our families. Her reply was: "Jacinda Adern said that did she? OK then". We brought her own bedding and as many of her familiar items as we could and moved her in. Because Greta needs routine and needs to know what is going to happen, each night she and I wrote up a simple plan for the next day including such things as a walk, aerobics on TV, meal and snack times, Ipad time, art time, cooking time. It worked really well. We called our patio area Courtyard Cafe and ate out there most of the time in the day.

Despite her issues and challenges, Greta did extremely well and I was so proud of her and enjoyed having her stay with us for so long, after 12 years living away from home.

Enjoying her lockdown lunch

Greta did a lot of baking during lockdown

XERVIER BUSY IN LOCKDOWN By Paul Doney

Lockdown was interesting. It gave our family of three time to be together and it's nice to know we enjoyed each otherâ€™s company. The most interesting thing was helping Xervier with his online schooling. Xervier goes to te Wa Ora Montessori School in Naenae, Lower Hutt, and has just started high school this year (Year 8). We have heard that some schools were pretty relaxed about school during the Lockdown but Xervier's had a really active programme.Â We had to be careful not to over-commit to too many classes. There were class meetings on Zoom then classes in the usual subjects using Zoom, or Google Classroom. There were also some great drama and film study

Xervier turned into a kitchen whizz, making bagels and pizzas

subjects, yoga classes and dance parties. We kept up PE by going for bushwalks and playing badminton inside the lounge room. Best of all was the cooking classes. We made bread, Anzac cookies, pizza, bagels, coleslaw and quiche. All delicious. Xervier had his 13th birthday at home during lockdown. We had been planning a big party at school that would have involved a Taiko Drumming and Lion Dance class, but that all got cancelled due to COVID-19. Maybe next year.

Champion Centre Column

IZZY ASHURST STARS AS LEAD ACTOR IN NZ SHORT FILM The Champion Centre in Christchurch has helped many children with intellectual disabilities start a life full of potential and opportunities. Izzy Ashurst is one of the graduates who is already making her mark, writes Andrea Heffernan. Izzy Ashurst, nearly aged 13 and one of our Centre graduates, has the leading role in a short film that has been written and directed by her mum, Gillian Ashurst. 'The Meek' is an apocalyptic drama in which humanity is shown to be on the brink of extinction due to a virus. The film explores the journey of its lead character, who happens to be a young girl with Down syndrome. Ironically, the film was written and shot prior to the current worldwide crisis. Izzy’s mum, Gillian Ashurst, has been an integral part of the New Zealand film industry since the late 1990s and has a feature film called 'Snakeskin', four short films (including 'The Meek') and at least four documentaries under her belt. She is the recipient of a number of film and television awards and her projects have received invitations from a plethora of film festivals across the globe. Due to Gillian’s work, Izzy has grown up around cameras and film sets, so this kind of visual story telling has always been quite normal for her, and she’s always had a love of performing. “Having Izzy in my life inspired me to write the script for 'The Meek', and I basically wrote it with

her in mind from the start. I knew what she’s capable of, and of course how to get the best performances from her,” says Gillian. “One of the most important qualities that Izzy brought to the set was her sense of openness and honesty. Izzy responded absolutely sincerely to whatever was going on in the scene, and whatever the other actor was bringing to her.” ‘We didn’t rehearse too much with her, we just let her be herself within the context of each scene, and that worked really well. “The adult actors sculptured their performances around her in order to help guide her toward the performance we needed. But this also meant that sometimes her reactions were unexpected, and often that was quite magical,” says Gillian. Gillian says Izzy had a great time. “Like all kids, she likes attention and she certainly got a lot of that on set, with makeup and wardrobe fussing over her. But she did have to work hard and it was tiring at times.” The main shoot was six half-days spread over eight weeks. Breaking up the film shoots definitely made it easier on Izzy, and also suited the time progression of the film across changing seasons. However, Gillian says it wasn’t always easy working with Izzy (as with any pre-teenager). “The honesty that makes her performances so good can also be problematic. She doesn’t really care that there’s a schedule or how many people are standing around waiting to finish the day. If she doesn’t feel like doing something in a particular moment, she’ll let you know!” They had a few things in place to help with this and support Izzy. Actress Tandi Wright, who plays Izzy’s Mum in the film, stayed on beyond

Lead actors Izzy Ashurst and Paul Glover at Okuku — Photo credit/ Bronwyn Evans

Filming in Hawarden - Izzy with Riley Dench

her shoot days to be an acting coach in some of the later scenes. Gillian was aware that Izzy wouldn’t always want to do what Mum tells her, but having Tandi there as an intermediary really helped. Izzy says she really liked the people she worked with. “I liked Tim from High Five; he was fun,” says Izzy, referring to Tim McInnes, the directing intern who had a passing resemblance to Tim from Hi 5. “I liked Uncle Frank and Tandi. We played a lot of games.” Uncle Frank is Paul Glover. The cast and crew all called Paul ‘Uncle Frank’ throughout the shoot, as Izzy at times struggled separating character names from actor names. “But I didn’t like it when it rained and we still had to work. And once I got scared because a dog barked.” Izzy was paid for her role and Gillian devised a special payment system. As Izzy really wanted an iPhone, Gillian paid her a little cash at the end of each shoot day and this went into her savings jar. They timed the payments so that at the end of the shoot she had enough money for the phone. “She definitely learned what it means to do a day’s work, earn your own money and save for something,” says Gillian. Izzy has big ambitions. “Next time I want to make a story that I write and I want John and his big

camera to film it.” Izzy enjoyed the process more and more as the shoot went on and she got to know all the other actors and crew and became comfortable with the process. She loved working with the other actors, Paul Glover and Tandi Wright, who put a lot of effort into keeping her occupied between takes. Off camera, Paul’s magic tricks were a definite highlight. On one of the shoot days she was also joined by another Champion Centre graduate, Riley Dench, who also had a role in the film. Having Riley join her on set was a lot of fun. Izzy was also particularly fond of lunchtimes, and the fish ‘n chips that she was promised at the end of some shoot days. The film was shot at a number of places in North Canterbury where the Ashurst family live. These include places like Okuku and Loburn that boast gorgeous rural landscapes. Filming also took place at the beautiful Amberley Beach and the small-town Hawarden. ‘The Meek’ is currently in post-production, with sound design and music being completed. It will then be submitted to international film festivals before having local screenings later in 2020.

Health

IMPORTANT HEALTH RELATED ISSUES FOR FAMILIES TO CONSIDER Linda te Kaat of the NZDSA attended the New South Wales Down syndrome Health Conference. In the second part of reporting from the conference, we cover dementia, relationships with your GP and Atlanto-Axial Instability. Dementia is an increasingly important issue in the Down syndrome community and the Health Conference in Sydney dedicated a special session to dementia The session started with a mother speaking of her 45-year-old daughterâ€™s journey with dementia. As her daughter flatted for 15 years, the early signs were not picked up, but she got quieter and did not participate as much as she usually did. She then had a seizure out of the blue and this was the beginning of the journey. In Australia, just like New Zealand, there are few care options for people under 65 years of age. There are many causes of dementia and it is usually progressive and irreversible with declines in thinking, memory and functional skills. There are two categories for ages, younger is under 65 and older is 65+ years. Any decline before 40 years of age usually would not be dementia, but more likely to be a medical

problem and always requires thorough medical investigation. Types of dementia include Alzheimer's disease, frontotemporal, Lewy body, vascular, and other. How common is dementia in Down syndrome? AGE

RATE

<40

<10%

50s

30%

60s

50%

>65

80%

But where do you start if anyone starts showing dementia symptoms? Visit the GP and make sure they consider other reasons first like physical health, depression, sensory, thyroid issues, vitamin and mineral deficiencies, environmental stressors and mediation reactions. Make sure you track changes by using the Dementia Screening Questionnaire for Individuals w i t h I n te l l e c t u a l D i s a b i l i t i e s ( D S Q U I I D) assessment of skills and clinical review. The next step is breaking the news to the person with Down syndrome, family and carers, and

start planning for changes. Focus on preserving and supporting skills, home modifications, risk assessments and general overall health. Start working towards transitions. You will need support so carers and staff can prepare, discuss options and preferences. Make sure you maximise the quality of life through a healthy lifestyle, stay active and engaged which all help to address physical health, sleep problems and depression. Also start looking at aides and make memory boxes and communication books. Addressing related symptoms is very important as behavioural changes are common in dementia. It is important to manage environmental changes and medications. Seizures can be common and require medication to control. Unfortunately, the diagnosis can be a lengthy process taking between 12-24 months from suspecting someone has dementia until it is confirmed. The key points from this session were: • Healthy lifestyle and engagement. • Regular health checks. • Establish baseline function & track changes from the age of 30. • Lengthy diagnosis time – investigate changes early. • Plan transitions early. • Get carers support. • Medications may help. • Use all available resources.

A good relationship with your GP The conference also ran a good session about how to create a strong relationship with your GP. The vital first step is to find a GP that will commit to you and provide continuity of care, rather than going to a health centre and seeing a different GP every time. If necessary, interview several GPs to get the right fit for you and your family. Never be afraid to change GPs either. If you have more than one thing to discuss then plan for a longer appointment by making a double one. Also don’t forget that if required, you can ask the GP to make a home visit. When you have issues to discuss, then the young person does not necessarily need to go with you. Your GP is trained for whole-person care, but

may need to direct you to specialist care when required. GPs are generalists and may not have a lot of experience with people with Down syndrome, so educate your GP. Explain. how to approach your young one or communicate effectively with them to get the best information. Medical institutions are not all great at keeping good record, so keep a file with all GP visits and information, so you can dig it out if required.

Atlanto-Axial Instability (AAI) – Neck instability People with Down syndrome often have low muscle tone and lax ligaments which stabilise the joints, so this can also affect the complex set of joints between the head and upper neck vertebrae. One of the functions of the vertebrae in the spine is to protect the spinal cord and nerves which run from the base of the brain to the pelvis. The main concern about AAI is that this increases the risk of spinal cord damage. The greatest potential for excess movement of one vertebra on another and possible misalignment is at the top of the spinal column at the atlanto-axial joint. This joint lies between the top vertebra (atlas or C1) which supports the base of the skull, and the second vertebra (axis or C2). There is movement at these joints whenever you move your head. Parents, caregivers or people with Down syndrome should be aware of the warning signs and symptoms below and should seek medical advice as soon as possible. Important symptoms of AAI: • Inability to turn the head laterally or poor neck control. • Pain at the base of the skull. • Change of gait. • Tired, supporting head with the hands. • Loss of first bladder/bowel control. • Tightness in the muscles. • Inability to manipulate things with their hands.

IHC Library My friend has Down syndrome by Kaitlyn Duling "In My Friend Has Down Syndrome, beginning readers are introduced to different characters who have Down syndrome, how Down syndrome may affect their actions, and how we can be good friends to people who have Down syndrome. Vibrant, full-colour photos and carefully levelled text engage young readers as they discover how to be empathetic and include all kinds of friends." PUBLISHER'S WEBSITE

On the internet: our first talk about online safety by Jillian Roberts On the Internet: Our First Talk About Online Safety introduces children to the basics of online safety in a story-based, conversational style. Using real-world examples set within the context of a child who is using the Internet for the first time and watching an older sibling interact with social media, Dr. Roberts takes readers through several common scenarios around parental supervision, online bullying and anonymity. She also includes examples of people who use the Internet to make the world a better place. 'On the Internet' addresses common safety concerns in a child-centred way and offers easy-to-understand rationales as to why it's important to maintain boundaries online just as in real life. The World Around Us series introduces children to complex cultural, social and environmental issues that they may encounter outside their homes, in an accessible way. Sidebars offer further reading for older children or care providers who have bigger questions. For younger children just starting to make these observations, the simple question-and-answer format of the main text will provide a foundation of knowledge on the subject matter.

Intellectual disability in the twentieth century: transnational perspectives on people, policy and practice Edited by Jan Walmsley and Simon Jarrett. "With contributions from distinguished authors in 14 countries across five continents, this book provides a unique transnational perspective on intellectual disability in the 20th century. Each chapter outlines different policies and practices, and details real-life accounts from those living with intellectual disabilities to illustrate their impact of policies and practices on these people and their families." - Publisher's website.

Looking after my eyes by Sheila Hollins We a l l n e e d to l o o k after our eyes. This book shows Jade and Mac getting their eyes tested and explains what happens afterwards. Jade is given glasses to help her see better, and Mac has to have an operation. Their feelings about what happens to them, and how things are explained to them so they can give informed consent, are addressed. Fiona also has sight problems and uses a cane to get around safely, and a magnifying glass to read. This book can be used to prepare someone before having as eye test, hospital visit or operation. It can also be used to help someone to understand the adaptations that are available for people with sight problems. It is an invaluable communication tool for eye care professionals during consultations and before treatments Please contact your library team (Phil, Ros, Ann and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ You can watch their library video at https://www. youtube.com/watch?v=AunmBYTIZTM

NZDSA Notices Youth Development Camp Whilst things might still be uncertain, we are hopeful that the 2020 Youth Development Camp will still be hosted from Friday the 27th November until Sunday the 29th November 2020 at Vaughan Park Retreat Centre, Long Bay, Auckland. This year the NZDSA National Committee has indicated that the 2020 camp will be for either a youth or young adult who has higher support needs to attend with a parent or primary carer, or a youth or young adult who has struggled during Lockdown who can attend with a parent or primary carer, or a youth or young adult who is independent, can self-manage and does not have additional support needs and would not require a parent or primary carer to attend with them. Please note that we have limited places on offer, so please email Linda on nzdsai@xtra.co.nz by the 27 July 2020 to register your interest.

Rose Award

NZDSA Annual AGM: Date – 30 October 2020 Time: 5.30pm for a meet and greet with tea and coffee. AGM will start at 6pm Venue: Mercure Abel Tasman Hotel 169 Willis Street, Wellington. Dinner to follow at Bistro 169 at your own expense. Everyone welcome. RSVP to nzdsai@xtra.co.nz by 20 October 2020 if attending so dinner reservations can be made.

The NZDSA is calling for nominations for the NZDSA 2020 National Achievement Awards These awards recognise the accomplishments of people with Down syndrome during 2019. If you would like to know how to nominate a person please email Linda te Kaat before August 31, 2020 at nzdsai@xtra.co.nz.

Thanks

You will note that no one was nominated for a Rose Award in this edition of CHAT 21. So, I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21. The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email Linda at nzdsai@xtra.co.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Top 10 Maths Applications The NZDSA would like to know your favourite apps for maths. Please email your list to Jess at hello@nzdsa.org.nz

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

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

NZDSA Committee

Contact Directory Kim Porthouse

Bev Smith

Diane Burnett

President Wellington & Wairarapa 021 297 0298 president@nzdsa.org.nz

Zone 1 Representative Northland 0800 693 724 press 3 northland@nzdsa.org.nz

Zone 1 Representative Auckland 0800 693 724 press 3 auckland@nzdsa.org.nz

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

Bridie Allen

Gwen Matchitt Vice President Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 press 3 zone2@nzdsa.org.nz

Angelique van der Velden

Zone 6 Representative All areas below Ashburton 0800 693 724 press 3 zone6@nzdsa.org.nz

Shelley Waters

Zandra Vaccarino

Linda te Kaat

Coen Lammers

National Executive Officer 0800 693 724 ext. 1 neo@nzdsa.org.nz

National Administrator 0800 693 724 ext. 2 nzdsai@xtra.co.nz

CHAT 21 Editor 027 730 239 editor@nzdsa.org.nz

NZDSA Staff

Zone 5 Representative Ashburton & all areas above 0800 693 724 press 2 zone5@nzdsa.org.nz

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

Regional Liaison Officers

Averill Glew

Auckland Community Liaison Officer 0800 693 724 press 3 clo@adsa.org.nz

Jess Waters Social Media and Information Officer 021 032 8539 hello@nzdsa.org.nz

Treasurer treasurer@nzdsa.org.nz

New Zealand Down Syndrome Association PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Donna Higgs-Herrick

Sandra Slattery

Canterbury Community Liaison Officer 0800 693 724 press 3 cdsainc@gmail.com

Taranaki Community Liaison Officer 0800 693 724 press 3 taranakidownsyndrome@gmail.com

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 ext. 2. 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 ext. 2

Zone 4 Representative Wellington & Wairarapa 0800 693 724 press 3 zone4@nzdsa.org.nz

Me and my pet DAVID RICHARDSON WITH HIS DOG POPPY

MICHAEL DODDS AND HIS CAT 35

Our people

Bella and Suzi Lammers trying iceskating in Tekapo (right) Michael Dodds is the first person to manage to get all the sled puppies in Canada to look into the camera (centre left)

Caleb Pepper, 5, loves Bob the Builder and hammering, so his mum Georgia made him a toolbelt (centre right) Courtney Duncan (24), with her pilot Abi during the 18km road race as part of the cycling festival held in Cambridge earlier this year in which they came second (right)