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CHAT 21

Journal About & For The New Zealand Down Syndrome Community

ISSUE 84, Summer 2020 ISSN 11776323

Our People

Michael Dodds voting for the first time

Oscar Smyth ready for Halloween

Bridie and Sienna Allen

Luke and Aiden at Halloween

Contents ATTITUDE AWARDS

From the Editor 4

NORTHLAND COMMUNITY GOING STRONG

PROJECT SEARCH LAUNCHES YOUNG ADULTS INTO THE WORKPLACE

A UNIQUE AND UPLIFTING EXPERIENCE

DUNCAN ARMSTRONG WINS MAJOR ARTS AWARD

BUSY YEAR FOR STRIVE TEAM

CONNECTING WITH YOUR COMMUNITY HELPS WELLBEING

ATLANTO-AXIAL INSTABILITY

NZDSA RESOURCES AVAILABLE ONLINE

THE ROSE AWARD

BEN THE BUTCHER

HUNGRY HAMISH

LUKA GOES LIKE A ROCKET AT NATIONAL SCHOOL SWIMMING

EMMA'S POEM

A TRIBUTE TO ZEN

HOLIDAY DISCOUNTS

A TIME TO REFLECT, PAT OURSELVES ON THE BACK, BE THANKFUL AND LOOK FORWARD

GOVERNOR-GENERAL HONOURS GREAT ACHIEVERS

SPECIAL OLYMPICS TRAINING, COMPETING, SUCCEEDING

ADRENALINE AND ADVENTURE RUNS THROUGH THE VEINS OF THE LATZ SIBLINGS

IHC LIBRARY

SITUATIONS VACANT

NZDSA NOTICES

CONTACT DIRECTORY

OUR PEOPLE

ME AND MY PET

As this crazy year 2020 is coming to an end, many of us will be reflecting on turbulent times that have had an unprecedented impact on the world. The effects of the COVID-19 pandemic reached every corner of this planet in a way that no other event in human history has had. Every person and every community in the world has been dealing with the same threat to health and economic well-being. The Down syndrome community in New Zealand has been no different, but thankfully our research has shown that our families have coped better than many. It is possible that our daily battles trying to navigate a society that is not always supportive of people with a disability, has conditioned our families to be more resilient. Instead of letting COVID-19 derail our daily lives, it was merely another challenge we had to meet. As we are heading towards Christmas, this edition of CHAT21 is one to celebrate many great achievements, in the arts, in the sporting arenas, through the Frances Clarke Memorial, the recent Attitude Awards and through Project Search. People with Down syndrome are breaking barriers everywhere, changing perceptions and inspiring others to see what is possible. After the year we had, 2021 can only be full of expectations and possibilities. Keep us posted on all your adventures and enjoy a wonderful Christmas holiday. And remember to encourage your friends and families to register for free, to access our resources and enable the NZDSA to represent everyone in our community. Coen Lammers editor@nzdsa.org.nz This issue of CHAT 21 was made possible with donations from Southern Stars.

Cover photo: Aunty Aria Morgan with her niece Ivy-Grace

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.

Libby Hunsdale, with grandmother Barbara, and Michael Hurst

ATTITUDE AWARDS Libby Hunsdale and Hamish Gilbert were among the big winners at the Attitude Awards earlier this month. Libby won the Attitude Youth Courage Award, while Hamish received the Attitude Special Olympics Award. Now in their 13th year, the Attitude Awards celebrate the achievements and successes of New Zealanders in the disability sector. The black-tie gala was hosted by TV news presenter Simon Dallow and saw performances from his daughter Paris, and singer-songwriter Benny Tipene. Additionally, Delta Goodrem shared a special video performance of her hit song ‘Solid Gold’ ahead of her 2021 New Zealand tour. L i b by H u n s d a l e ’s Yo u t h C o u ra g e Awa rd celebrates the achievements of a young person with a disability whose courage and determination

will remind Kiwis of the power of the human spirit, and the quest of young people with disabilities to lead full lives. “We know Libby embodies the spirit of this award. Her courage has been shown in her overcoming personal loss and throwing herself into auditioning for, and successfully gaining, the role of Poppy,” producer Robin Laing said before the awards. Poppy is the story of a young woman with Down syndrome who refuses to be defined by her disability and decides to take control of her own life. Written and directed by Linda Niccol, Poppy is produced by Robin Laing and Alex Cole-Baker. Hamish Gilbert was recognised for his outstanding achievements with Special Olympics, as well as completing the Duke of Edinburgh Golden Award. Earlier this year Hamish presented at the launch of the Special Olympics Duke of Edinburgh Club to encourage other Special Olympians to get more involved. “I wanted to show others that getting involved was about challenging yourself and stepping outside your comfort zone, but it was all good fun,” said Hamish. “Just because you have a disability, it does not mean you can’t be successful - the Duke

of Edinburgh Award Scheme is achievable for anyone. The whole experience was a huge opportunity for me to show what people with a disability can do.â€? During the Attitude Awards 25 individuals and organisations were recognised, with Grace Stratton picking up the Attitude ACC Supreme Award. Auckland-raised Grace (20) co-launched All is for All, an accessible communications, media and talent agency, with her friend Angela Bevan in 2019. Grace, who uses a wheelchair, understands the challenges of purchasing garments online only to discover they arenâ€™t purpose-built for disability. Jennifer Del Bel and the Downlights Company were nominated as finalists in the Impact category, which was won by Jonathan Mosen.

Jessie Coles performing

Attitude Youth Spirit Award Sponsored by Barfoot & Thompson Libby Hunsdale Attitude Community Champion by Lotto NZ Timothy Young

Libby receives her Youth Courage Award

Attitude ACC Employer Award Sponsored by ACC GPSOS Attitude Sporting Endeavour Award by Sport NZ Anna Taylor Attitude Support Superstar Award Sponsored by Drake Medox Elizabeth Goodwin Attitude Employee and Entrepreneur Award Sponsored by APM Grace Stratton

Hemi David with Hamish Gilbert showing off his Special Olympics Award

Spirit of Attitude Award Sponsored by NZ on Air Lusi Faiva Attitude Special Olympics Award by Datacom Hamish Gilbert Attitude Impact Award by Ministry of Health Jonathan Mosen Attitude Awards Hall of Fame Rodney Haines Attitude Awards 2020

Regional Focus

Our group at Whangārei Academy of Gymnastics

NORTHLAND COMMUNITY GOING STRONG Since its inception in the 1990s, Northland Down Syndrome Support Group’s kaupapa has been able to fill the gaps and meet the needs of people with Down syndrome and their whānau across Tai Tokerau/Northland. Started by parents who wanted to connect themselves and their families with others in similar situations, the group has grown over the decades. Those original children are now in their late twenties and thirties; they and their families are now experienced guides for the new whānau who join our community each year.

Each edition, CHAT 21 focuses on one region and this time Jo Morrison from the Northland Down Syndrome Support Group tells us what’s happening in the Far North. After many years as a charity, Northland Down Syndrome Support Group became a charitable trust in 2017. Its Board of Trustees currently comprises four mums who organise and run all events and activities as unpaid volunteers. O u r C h a i r p e r s o n a n d N Z DSA Co m m i t te e Representative is Bev Smith. She is part of the community nursing service and mum to Erin who has Down syndrome and is in her 30s, works for Northland DHB and is a member of STRIVE. Our Secretary and Coordinator is Kathryn Sadgrove. She has a background in transition and

advocacy, and a strong voice on consumer panels for Northland DHB. Her son, Thomas, has Down syndrome and is in his late 20s and loves to go fishing. Jo Morrison is Treasurer and Education Adviser. She has a background as a secondary school teacher and senior leader and recently completed a Master of Education exploring how children with Down syndrome are being supported in a small number of mainstream Northland schools. Her daughter, Lucy, has Down syndrome, is seven years old and attends her local primary school. Fiona Rowse is our fourth trustee. She also has a background as a secondary school teacher and is currently a guidance counsellor. Her daughter, Freedom, has Down syndrome. Now in her 30s, Freedom lives independently and contributes her voice to youth councils in the Whangārei area. We also have three Officers of the Trust: Erin and Freedom, plus Karen Tucker who has served on the committee since its inception, holding the role of Treasurer for over a decade. She is mum to Daniel, now in his twenties, who loves to sing and has his own very definite sense of style (as those of you who know him can attest!) To fill the gaps and meet the needs, Northland Down Syndrome Support Group provides regular activities and events to support the growth of our community and the building of a sense of belonging within its members. From the birth (or even at pre-birth diagnosis) of a new baby with Down syndrome, Kathryn is available to welcome, support and offer a listening ear and provide reassurance to families. When they are ready, she connects them up with other parents/carers of babies or young children with Down syndrome in their area to facilitate mutual support. We run two monthly activities that children with Down syndrome, their siblings and whānau can attend. On the first Sunday of each month, we spend an hour together at FlipOut Whangārei. On the third Sunday of each month, we go to Whangārei Academy of Gymnastics for an hour of gym fun followed by a shared kai. Both of these activities are free of charge and we are incredibly grateful for the supports and discounted rates we receive from these two venues. Adolescents and adults can also attend the FlipOut sessions and also have their own social club, GreatM8s. This is a group for people with

Down syndrome and other intellectual disabilities and has been going for many years. They have their own Facebook group and meet fortnightly for crafts, movies, ten pin bowling and meals out. Sometimes they have visiting speakers; recently they met with Emily Henderson, Whangārei’s new MP! We also support our children and young people with Down syndrome at school by providing professional development workshops at the beginning of each year to teaching staff across the region. Working in close partnership with local Ministry of Education Learning Support teams, we have trained over a hundred teachers, teacher aides, and SENCOs in Kaitaia, Kaikohe, and Whangārei over the last three years. The population of Tai Tokerau/Northland is widespread, making it a real challenge for our families from further afield to meet up. With this in mind, we have a very active Facebook group that keeps us all connected and we run two annual events that encourage our Down syndrome community of all ages to get together. These are the Christmas Party and the Hātea Loop Walk in Whangārei for World Down Syndrome Day. For the last two years, the Christmas Party has been held at Tikipunga High School Hall, with a barbecue lunch provided by Rapid Relief Team, and entertainment and hands-on activities provided by Circus Kumerani. Santa visits too! So, we all leave at the end with a gift for the children, a nice full tummy, and a big smile. The Hātea Loop Walk to celebrate WDSD was first held in 2019 and attended by over 230 people. A number of local businesses supported us by providing refreshments and prizes. Sadly, due to lockdown, the 2020 walk was cancelled. Instead, we took WDSD2020 online and shared photos of ourselves dressed up on our Facebook group page and raised money through an online auction. We’re hoping to be back walking the Loop again to celebrate WDSD2021! We couldn’t do any of this work without our small team of hard-working volunteers, the funding provided by COGS and Lottery Communities, and all the local businesses who support our activities and events. Thank you, all of you!!

PROJECT SEARCH LAUNCHES YOUNG ADULTS INTO THE WORKPLACE By Coen Lammers Eight young adults with learning disabilities recently graduated from Project Search, an innovative programme by the Canterbury DHB that gives youngsters the opportunity to learn new skills and get work experience. A very proud Logan Moloney was one of the 2020 graduates who had to endure a rollercoaster ride due to COVID-19 lockdown. Logan’s mother Di says she was incredibly grateful to programme lead Linda Leishmann and her team for keeping them connected, “which must have been very challenging with the uncertainty and pressure they were under at Burwood Hospital”, says Di Moloney. Project Search was launched in 2019 to follow the example of a similar successful programme in the United States. Designed to break down barriers to employment for young people with disabilities, the programme sees each intern work across three 10-week placements in areas including IT, administration, kitchen and food services, orderly services, in the physiotherapy, spinal and older persons mental health departments, or in maintenance and stores.

Logan Moloney says he loved coming to the hospital every day. “I enjoy the classroom time and working with the other Interns and I have made lots of friends,” says Logan who completed placements in the hospital kitchen and more recently in the physiotherapy department. “In the kitchen I cleaned the big dishwasher, heated plates and helped with meals for patients. I put the stores away in store rooms and kept the areas tidy." “In Physiotherapy I worked with Karen. I am happy because I am helping people." “I work in the Gym and the swimming pool area. I set up the Knee class and go to the Spinal Gym to help people. I have my office to do admin and my own in-tray for my work that I do. I love working in Physio,” says Logan. Di Moloney says she first found out about Project Search when visiting a friend in hospital and running into Hayley Butler who was part of the inaugural class of 2019. “Hayley was in the department delivering the clean laundry. Hayley has Down syndrome and

On duty in the kitchen

Logan checking the crutches

I was impressed with her confident manner and the way she spoke to us all and explained what her duties were and she told us about Project Search.” Di says Project Search was a perfect way to transition from secondary school into a working environment. “And you have to applaud the CDHB for taking this programme on.” Di adds that Project Search has very high expectations of the Interns who in turn are expected to perform to the best of their ability. “The interns have to be reliable, punctual, independent, develop appropriate social skills and have to travel to work independently. Logan is up at 6am every day, so he can be on the bus by 7am and returns at the end of the day by 5.30pm so it is a very long day.” “Logan has grown so much in confidence this year and really enjoys going to work every day. I cannot speak highly enough of the programme.” Canterbury DHB Chief People Officer Michael Frampton said the programme is an important initiative that’s part of Canterbury DHB’s efforts

to ensure our workplaces are inclusive and that we celebrate diversity. “Canterbury DHB is committed to creating a workforce that understands and reflects the communities we care for. Of more than 200,000 Kiwis with disabilities who are unemployed – three quarters of them want to be working, but can’t get jobs. Project SEARCH has enabled us to be part of the change we want to see. “We’ve been able to equip our interns with real, meaningful work experience and they’ve repaid us in spades by nailing their jobs. The grit, determination and work ethic they’ve shown this year has been inspiring for everyone in our organisation.” Canterbury DHB Project SEARCH is a collaboration between the IHC Foundation, CCS Disability Action, Low Vision and Blind NZ, Riccarton High School and WorkBridge.

Mother Daughter Day team with The Dust Palace Tutors

A UNIQUE AND UPLIFTING EXPERIENCE By Rebekah Williamson PHAB is a little organsisation with a big impact. PHAB primarily provides social groups for people of all abilities, across Auckland. We are always looking for new ways to engage with our community. We have been doing a Girls Day Out annually, but after talking to many families we came to realise that the day-to-day routines for our mothers and daughters often revolved around care, and we wanted to provide a day that was uniquely about their relationship: bonding, learning and being together. The Mothers and Daughters Day started with a cooked breakfast at the PHAB building, all the families came together and before long we were in taxis and off to our main activity for the day: Aerial circus for the day at the Dust Palace. We chose the Dust Palace in particular because of the large and varied range of costumes that

they had, as we wanted everyone to walk away with photographic memories from the day. Dust Palace was amazingly professional, and provided just the right amount of support, exceptional safety and empowerment to allow the participants on the day to grow in confidence as they explored the apparatus. After lunch everyone dressed in costumes and got their time in the limelight for their photoshoots with their photographer Natasha Hâ€™ng. The afternoon was finished off at Kiwi Nails and Spa in Takapuna and cake and drinks. We were lucky to have support from the Louisa and Patrick Emmett Murphy foundation, who saw the value in providing this special day and supported us to do so. We are grateful to everyone who made this day happen. We are especially grateful to the Mothers and Daughters who were simply inspirational.

Deborah and Faith Van Heeswyck

Kathleen Derrick. Photos/ Natasha H'ng

In the Hoop – Lizara Cuthell; Left Sian and Anne Thomas; Right/ Emmily O’Connor

Duncan Armstrong featured in the Touch Compass short film Drumming Is Like Thunder

DUNCAN ARMSTRONG WINS MAJOR ARTS AWARD Even as a toddler Wellington performing artist Duncan Armstrong couldn’t stop dancing to music and once he got a taste of acting at primary school he was hooked. “I didn’t really decide to become an actor, it came to me at primary,” says Duncan who is now 31 and a trailblazer when it comes to breaking down the barriers that face disabled performers. Duncan, who has Down syndrome, has spent the past 14 years pursuing his career with singleminded determination. He’s not about to be pigeon-holed: he wants to do everything. “I want to do more stage and screen roles, music, dance and acting. And I’d like to make my own

film one day too.” As Wellington director Isabel MacKinnon, who worked with Duncan on his 2018 award-winning solo theatre show Force Field observes, he embodies motivation and professionalism. “He’ll routinely arrive at rehearsal before me, get changed and undergo his own personal warmup while everyone else is still trying to find the coffee plunger,” she says. That determination and persistence was recognised at Te Putanga Toi Arts Access Awards 2020 on 13 October when Duncan won the Arts Access PAK’nSAVE Artistic Achievement Award for the outstanding artistic achievement and contributions of an artist who has a physical, sensory or intellectual impairment, or lived experience of mental illness. The award carries a prize of $3000. In their comments the judging panel said: “ E ve r y t h i n g a b o u t D u n c a n A r m s t ro n g ’s artistic achievements has the wow factor! He’s produced a significant body of work across a range of artforms. He’s demonstrated enormous perseverance in overcoming obstacles and pursuing his career, and his list of achievements is thoroughly deserved. Duncan has transformed perceptions about disability and in doing so has

created a pathway for others. Thank you for your outstanding contribution to the arts and to the disability sector.” Life as a performing artist is always precarious but artists with disabilities face additional challenges. Getting access to training is hard – “People turn you away,” Duncan says – and finding roles is hard too. However, Duncan is determined to help break down those barriers. “People should be more accepting – let us join. Turning us away isn’t fair. People with disabilities are part of life – we need to see ourselves onscreen and onstage.” And despite the barriers, he’s managed to build an impressive CV that runs for several pages. After getting into acting in a more serious way while attending Wellington’s Onslow College, Duncan then completed a Certificate in Foundation Music at Whitireia Community Polytechnic. He’s been playing the drums since childhood and now has a band with his father called Mr Handsome. “I kept calling my father the old man, which he didn’t like so I started calling him Mr Handsome,” says Duncan. His career began to take off when he got a role in the television programme Nothing Trivial in 2011. By that stage he was also a member of Wellington Integrated Dance (WIDance) and Auckland’s professional inclusive company Touch Compass. Through WIDance and Touch Compass, Duncan has developed and fine-tuned his dance skills. In 2015, he was selected as a Touch Compass company dancer performing in Acquisitions, a powerful and moving multi-media dance p ro d u c t i o n t h at to u re d to H a m i l to n a n d Wellington. The show included a film featuring Duncan called Drumming Is Like Thunder, which won the Most Original Film Award at the 2016 Sit Down Shutup and Watch Film & New Media Festival in Australia, and also screened at the 2017 Sydney Film Festival. In 2018 Duncan worked with Isobel MacKinnon to create Force Field, a 25-minute solo show that won six awards at the 2018 Auckland Fringe Festival, including a Best Performance award. Reviewers described the play as “captivating”, “delightful” and “emotionally engaging”. More recently, Duncan performed in a short film, The Last Man on Earth, a sci-fi thriller with a message about the worth of people with disabilities that was written and directed by April Phillips. Duncan’s performance in the film has already won several international film awards,

Duncan Armstrong in his award-winning solo show, Force Field (Photo credit Andi Crown)

Duncan Armstrong, a member of WIDance

including one for Best Supporting Actor at the Independent Shorts Awards in Los Angeles. Like others who have worked with Duncan, April Phillips is full of admiration for his work ethic and commitment, pointing out that he even did his own stunts in the film. “He’s an instinctive, dedicated and utterly professional performer,” she says. “The only limits he has in life are those imposed on him by other people’s scepticism.”

STRIVE screen shot with self-advocates

BUSY YEAR FOR STRIVE TEAM The STRIVE advocacy and leadership team had another busy year and even the lockdown could not stop their work. STRIVE is a team of people with Down syndrome who are a member advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down syndrome. Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020. The team regularly meets for Funshops, which are workshops with different topics, where guest

speakers share their expertise with the young ambassadors. The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan. This final subject is particularly important as some of the STRIVE team members have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas. Once COVID-19 started affecting our day-to-day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings. The group got together on eight occasions between April and June to share their COVID-19 experiences and continue their other work. Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA. Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops,

The STRIVE team with self-advocates

Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia. The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor. On the international stage, STRIVE was part of a feedback group for the Down Syndrome International research on COVID-19, as well being part of a disabled person-led monitoring programme in Health and Wellbeing by the Donald Beasley Institute. The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually. “On the 13th October 2020 I received an Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong. “I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome

from the Invercargill Down Syndrome Group,” said Alexandra Hewitt. Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives. Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid a meeting fee. In the far north, Erin Smith is a youth leader in the Great Mates Social group. “I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes. I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin. Andrew Oswin said he really enjoys being an advocate and a member of STRIVE. “I am happy and privileged to have made a commitment of service to the Down syndrome community and country of New Zealand.”

NEO Notes

CONNECTING WITH YOUR COMMUNITY HELPS WELLBEING By Zandra Vaccarino

“When everything else disappears, what you’ve got are your people. It’s almost that the best group therapy is community.” Chloë Swarbrick Kia Ora I think the above statement by Chloë captures why most people found small bubbles during lockdown very challenging. I have listened to so many people in the Down syndrome community and the wider community share that not having access to their family, friends and regular activities during two lockdowns has impacted on their wellbeing. I also know that the NZDSA and regional groups have found it extremely difficult to cancel events as we know that these social events create networks and build a community which, as Chloë Swarbrick reflects, is so important because “It’s almost that the best group therapy is community”. So I would encourage you to connect to the NZDSA when we host local events and if you can’t join us, then connect through the various other avenues the NZDSA offers which includes CHAT 21 or join our various online options like NZDSA Enews, NZDSA Facebook page, or follow us on Instagram. Most importantly, please make sure you have looked at the NZDSA’s new website and that you have joined, so that you can access a range of free resources. All of these options will help you to become part of the NZDSA community and provide

opportunities for you to connect with others in the Down syndrome community so that you can share your experiences and contribute to the wealth of knowledge that our members bring to our community. The wellbeing of our members is important to the NZDSA and we are aware that not only are people with Down syndrome struggling with their wellbeing, but their families and whānau are also struggling. This is also supported by the COVID-19 survey findings which indicated that 54% of carers have a disability or chronic condition themselves, while caring for at least one other person, so with this in mind the NZDSA has applied for funding to the Lottery COVID-19 Community Wellbeing Fund to develop a wellbeing resource for our community. We hope that our application will be supported we will keep you updated on the outcome of this funding application.

International Volunteer Day On behalf of the NZDSA I would also like to extend our appreciation and gratitude to all the past and current volunteers who through their extensive contributions continue to develop the Down syndrome community in Aotearoa. I hope that you took a moment on December 5 to celebrate International Volunteer Day.

NZDSA 2019 Annual Report The NZDSA hosted the Annual General Meeting on the 30th October in Wellington. If you would like to read the NZDSA’s Annual Report, please email me at neo@nzdsa.org.nz and I will email you a copy.

The NZDSA National Committee and staff

I hope you will enjoy reading the report that STRIVE presented at the NZDSAâ€™s AGM.

World Down Syndrome Month To mark World Down Syndrome Month, which wa celebrated in October, the NZDSA launched two new resources. We first launched the enhanced 2020 edition of Living with Down Syndrome. This resource was written a number of years ago by a group of parents and has remained a valuable resource, but new research, increased knowledge and different attitudes to the abilities of people with Down syndrome, required us to do a complete overhaul of the publication for 2020. Living with Down Syndrome was redesigned as an educational resource with the most current information about Down syndrome from around the world to create greater awareness of the abilities of people with Down syndrome. Our staff and our volunteers worked on this

booklet for months, tapping into the latest research from our global networks, and most importantly the lived experiences of our families. This resource provides helpful information for families to deal with different phases of life and is also aimed at equipping professionals with valuable information and as an awareness tool to inform and empower the wider community to work alongside the NZDSA to realise our vision that people with Down syndrome are valued and equal members of their community, fulfilling their goals. This resource is accessible on our website and hard copies are also available. The second launch was the translation of the NZDSA booklet into six languages: Te Reo MÄ ori, Samoan, Tongan, Hindi, Chinese Simplified and Chinese Traditional so that we can support more members in our community. These resources are also available on our website. nzdsa.org.nz

NEO Notes

A copy of the Living with Down Syndrome book

Post-Graduate Diploma in Specialist Teaching Qualification Last year the Ministry of Education and Massey University signed a funding agreement to develop and deliver specialist teaching qualifications in selected endorsements that represent modern best practice and 21st century pedagogy. Specialist teachers play a critical role in the education system, especially for learners with learning support needs, and we want to make sure that the qualifications continue to be available and relevant to all New Zealand teachers. The refreshed qualification will continue to be available to specialist teachers such as Resource Teachers: Blind and low vision; Resource Teachers: Deaf and hard of hearing; and Resource Teachers: Learning and Behaviour and Early Intervention Teachers.

New courses also include a study pathway for te kĹ?hanga reo kaiako, advisers on deaf children and developmental and mobility coordinators. A feature of the new qualification will include opportunities for some of the content to be available to teachers working in the early childhood, te kĹ?hanga reo, primary and secondary sectors to develop their skills, knowledge and capability in supporting children and young people with disabilities and additional learning needs. The NZDSA and a team of parents interested in education contributed via a zoom focus group to the stream of work on the refreshed Post-Graduate Diploma in Specialist Teaching Qualification. A celebration of this refreshed qualification was held on Tuesday 10 November at the Ministry

of Education’s National Office in Wellington. A representative of the NZDSA attended the event and other representatives joined via zoom. The NZDSA will continue to liaise with the programme coordinator so that we can make further contributions to this qualification.

Office of the Health and Disability Commissioner The Health and Disability Commissioner and the Nationwide Health and Disability Advocacy Service have released a series of videos to help people with learning disabilities think about their own experiences with using disability services and their rights under the Code. The STRIVE group was involved in reviewing and contributing to the script and Duncan Armstrong, an award-winning actor who is also a member of STRIVE, features in these videos. There are five videos, each with a different story. The videos look at how Sam and his friends use disability support services and how they resolve any concerns that they have. You can view these videos on the NZDSA website.

Opportunity to join the NZDSA team at National Office Many of you will know the wonderful Linda te Kaat, the NZDSA National Administrator who has had a pivotal role in assisting the NZDSA to achieve its mission. Linda has worked alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities. Linda is the voice at the end of the 0800 calls, sends out resources, is the guru on securing grant funding, manages all the administration and finances in our organisation and helps with a range of activities to ensure our events run smoothly. Linda is a treasure but sadly after working for the NZDSA for over 17 years she has decided it is time to explore the next chapter of her life and wants to pass on the baton to someone else. Fortunately, she isn’t leaving just yet. If you are interested in joining the team at NZDSA

as the next National Administrator and Finance Officer or the Administration Support Officer then please contact Linda at nzdsai@xtra.co.nz for the job advertisements and to access a copy of the job descriptions.

Summer We have already had a few hints of summer weather, which heralds the approaching holiday season, so whether you’re planning a staycation or staying home we hope that you have a wonderful time. We would like to publish your favourite summer photographs in the Enews so please send your photographs to Jess at hello@nzdsa.org.nz. At the NZDSA National Committee in October we started planning for a number of events for 2021 and we are looking forward to opportunities to once again connect with you in your community especially to celebrate the NZDSA’s 40th anniversary. We will be sharing the events via Enews so if you haven’t subscribed, please contact Jess at hello@ nzdsa.org.nz so that you can receive regular Enews updates. The summer break also heralds that time of year when the team at the NZDSA national office starts to consolidate our work for 2020 and set in motion plans for events in 2021 before the office closes for the summer holidays. The NZDSA national office will be closed from the 18th December 2020 to the 31st January 2021. We will continue to provide urgent parent support via the 0800 number. The team at National office and the NZDSA National Committee would like to wish you and your family a blessed Christmas, and treasured opportunities to gather with family and friends over the summer break. After a very challenging 2020 we all wish you the best and most wonderful 2021! Hei konei rā Zandra

NZDSA Resources

ATLANTO-AXIAL INSTABILITY What is Atlanto-axial Instability (AAI)? ln people with Down syndrome the ligaments that normally hold the joints stable can be loose. This can lead to a wider range of movement at some joints including one of the joints in the neck - the atlanto-axial joint. This joint is the highest joint in the spinal column and it lies just at the base of the skull There is normal movement at this joint whenever you nod or shake your head. AAI is defined as an anterior posterior movement between these two cervical vertebrae of more than 5mm. When this occurs there is a risk of spinal cord damage with the shift of one vertebra upon another.

Prevalence AAI is more common in Down syndrome than in the general population (affecting up to 20% of people with Down syndrome) but even if detected, its presence does not necessarily mean the person affected will develop a spinal cord injury. The presence of AAI which is accompanied by symptoms is estimated to occur in only 1 % of cases. Despite this small number, medical personnel have at times taken a cautious approach with the advice given to parents of children with Down syndrome, including the avoidance of certain sporting activities. For the full resource please visit nzdsa.org.nz/resources

NZDSA RESOURCES AVAILABLE ONLINE A wealth of information at your disposal The NZDSA team has been working hard over the past few months to dig into 40 years of history and experience from our families to share our learnings. We have delved into our archives and old editions of CHAT 21 to find historical information and brochures that are still just as relevant as when they were written five or 20 years ago. The NZDSA is now in the process of updating, editing and redesigning these resources for our members in 2021. The resources cover a wide variety of issues, like glasses, coeliac, living independently, ante-natal testing, visiting the doctor, behavioural issues, nutrition, mental health and many other subjects that are relevant to our families. Resources and copies of CHAT 21 are free to all NZDSA members at nzdsa. org.nz/resources. We will continue to expand and build this invaluable resource as we gather more information from around New Zealand and around the world.

Resources are free to all NZDSA members, please visit nzdsa.org.nz/resources to access them

Rose Award

THE ROSE AWARD PRESENTED TO… ANDREAS HOFER The NZDSA would like to nominate Andreas for his generous offer to sponsor three young adults with Down syndrome to attend the Hearts Aflame Catholic Summer Camp in January 2021 in Marton. This was a generous donation and the NZDSA would like to thank Andreas for partnering with the NZDSA to provide our members with this opportunity to participate in this community event.

Nominate someone worthy for the next Rose Award…

I am sure you will join me in thanking Andreas for his generosity.

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@ 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.

Down Write Brilliant

BENN THE BUTCHER Benn from Blenheim, interview on Aotearoa Humanity Project I’m a butcher working for Mike Newman in Blenheim. It’s just cutting up meat, bagging up stuff and it’s insane. It’s actually pretty good. I work three days, and it’s going pretty good so

far, and he’s paying me on two main days. I was born on the farm, and I was a farm-boy for a few years, and now I got moved from there into town. I’ve got one main brother, and a step-brother. They’re different mates. They all do different things, and they always go out partying and things like that. When it’s a party I don’t even know about, then I get to go, too and that’s awesome. And there’s some people I don’t know. I like, going out with mates, hanging out, drinking and that. Everything’s pretty good. Nothing much in the future. I actually want to live on my own pretty soon, yeah.

Me and My Job

HUNGRY HAMISH By Hamish McNeill

My name is Hamish Duncan McNeill and I am a baker. I am 35 years old. After my Dad passed away 17 years ago, my older brother, Callum came up with the name “Hungry, Hungry Hamish” for me to have a business of my own, because I have always liked food and baking. I enjoyed cooking and baking at school. Then in October 2019, we (that’s my mum and me) got Damian to start working with me. He is a baker and he left his job to come and help me start my own business called “Hungry Hamish”. We have been baking lots of yummy things. We are baking healthy cookies. So far, my favourite is our Chocolate Chip Cookie. We are making other things, but some of them are a secret!

We have a Facebook page called “Hungry Hamish”. Please like and follow my page. We have set up our bakery in Marton. That is about 45 minutes from Palmerston North. We are baking cookies, cooling cookies and packaging cookies. I have got my own business card. The best part of my job is baking cookies and working with my baker, Damian. Damian helps me to make the cookies. He helps get the big mixer going for me too. I love my job. I have learnt to keep focused on the cookies, to smile a lot and to be kind to everyone I meet. I feel great to have the Hungry Hamish business and it is my dream job.

ABOUT US Hungry Hamish is a venture started in 2018 by mother-son and inspired by Hamish’s love of baking and his desire to always bring a smile and some deliciousness into people’s lives. Hamish has Down syndrome and wants to “bake the difference” by bringing paleo-styled healthy treats to as many people as possible! In doing so, provide a job for himself and other people with disabilities, alongside experienced bakers. At Hungry Hamish we have a social mission as well as a retail mission, and they go hand-in-hand. Our goal is that half of our employees will have disabilities. We want to show the world that anything is possible, with the right encouragement and goals in place. Hungry Hamish healthy treats are made with love and care, then wrapped with happiness and smiles. Enjoy.

Hamish and baker Damian with the new oven

To order go to hungryhamish.com

Down Write Brilliant

LUKA GOES LIKE A ROCKET AT NATIONAL SCHOOL SWIMMING By Luka Willems

On October 15 to 18, I went to Hamilton to swim and represent my school Papanui High which is in Christchurch. It made me very proud. I am a para swimmer. I swam in six races: 50 meters free, breast and backstroke. 100 free and breast and 200 free. I got 6 PBs (personal bests) in my 6 races and took 17 seconds off the 100m breaststroke. There were about 600 swimmers from New Zealand schools. It was very noisy, fun and exciting. I was the only swimmer with Down syndrome. A lot of people spoke to me and signed up to my YouTube channel â€“ Luka Willems. I like swimming and racing. It keeps me fit. Sometimes I swim like a dolphin or go like a rocket.

EMMA'S POEM By Emma Ferens Joyful of being Down’s It is a hard day being myself But being different is a good feeling I have friends that count on me I am not myself in my Down’s Syndrome way Because I am quite special with my 21 Chromosomes Other people have 22 Chromosomes in their body Like my special friends who has a different disability But they truly care about me There are others who doesn't have a disability or Down’s Syndrome Yet, we all have the same nature Like hair, eye colour and bodies I love babies with Down’s Syndrome Especially with normal babies Like my two nephews who are very cute and I love to play with them which makes me a very good aunty Creating a childhood filled with great memories To have courage and be kind to others Filled with laughter and joy Surrounding with friends and family

A TRIBUTE TO ZEN Our gorgeous son Zen River Watt passed away from a relapse of AML (leukaemia) on the 4.09.2020, at only 29 months. We are heartbroken that the journey with our extra special boy has ended early. From being unexpectedly diagnosed with Down syndrome at birth, we realised the serious magic in that extra chromosome. We were looking forward to so much with you Zen, to see you walk, hearing your first words and to just experience life with such a beautifully natured little boy. It’s a great shame that treatment has not advanced for the low percent of people with Down syndrome who relapse, when the standard protocol of chemotherapy simply does not work. From first-hand experience, our children, families and Zen deserve more. This community has truly been nothing but great, all people with Down syndrome, their parents

and families are just awesome in our opinion. And we are forever grateful to be a part of it. And forever grateful to Zen for bringing us to you all. Zen’s parents, Laurielle & Alex.

HOLIDAY DISCOUNTS

With school holidays started, many families will wonder what to do to keep their whānau busy and themselves sane.

Having a child with Down syndrome at

Auckland Blues Rugby Matches

Lido Theatre

times limits these choices, for a variety

Disabled person and companion can

$8.50 during weekday or Tuesday after

of reasons, and sometimes cost may

get free tickets to game matches

8pm for a person with a Community

simply be putting you off.

Service Card – no discount other

Many regions in New Zealand however,

Auckland Jet Boat Tours

have active policies to remove the

Booking for 4 people – 5%, bookings

financial hurdles for people with a

for 6 people – 7.5%, bookings for 12 –

Onehunga War Memorial Pool

disability and make their activities

10% discount

If requiring caregiver in pool then

more accessible for those with limited

evenings or weekends

$4.50 and disabled person is free. If

financial flexibility.

Auckland Zoo

person in pool doesn’t need caregiver

Online searches have revealed that

Caregivers are free and normal cost for

it is $4.50. Children under 16 free

the three main centres in the county

a person with a disability Lilliput Mini Golf

offer many discounts for people with different disabilities.

Kelly Tarltons

Tamaki Drive, Sylvia Park, New Lynn

Other towns and cities may have their

Free for carer & pay for disabled person

$10 per person

own discounts that are not on this list,

- just need to mention (sometimes they

so please email the NZDSA so we will

ask questions and may question it)

start adding to the online database we are building on our website. Here is the list of discounts for children

Maritime Museum Is free for Auckland residents

Cameron Pool and Leisure Mt Roskill $2.70 per person and caregiver is free.

Mt Albert Aquatic Centre

Children under 16 free

All people with a disability including

with special needs and their carers.

children – $3.30 caregiver is free Chipmunks Mt Roskill

Auckland

$6 per person under 11yo (please state

Odyssey Sensory Maze

special needs rate)

5-12yo – $13, Students w ID – $15 and Adults $17

Escape Masters Offer 50% discount for a person with

Olympic Pools Newmarket

Central Auckland

a disability

For a person with a disability $3 and

Archery War

Event Cinema – St Lukes

20% off total session price

$16.50 per session for a person with a

Paradice Ice Skating

community services card

Botany/Avondale – $8 per person

Fullers ferry

Tepid Baths

caregiver is free

Auckland Adventure Jets $78 for adult and $58 child

Free adult per disabled child Auckland Adventure duck Adult – $48, Child - $38

Community Services card rates $6. Children under 16 free. Caregiver is free.

Motat

Please inform if you are the caregiver/

Free for carer and disabled person

have a disability

Westlynn Butterfly Park

Pukekohe Ten Pin Bowling

Lloyd Elsmore Park Pool and Leisure

$3 per person (no discount) and under

$5 per person including caregiver, must

$3 per person with a disability. $1

2 is free

book prior

caregiver if needs to be in water – caregiver – free if out of water. Children

South Auckland/counties

Moana Nui a Kiwi Pool Mangere

under 16 free

All free Archery War 20% off total session price

Lagoon Pool and Leisure Centre Otahuhu Pools

Panmure

All free

$3 per person with a disability. If

Butterfly Creek

caregiver swimming $3 if caregiver out

Special needs under 3 – Free carer to

Otara Pools

one child , 3-15 years $9.60 – 1 carer to

All free

of water is free – Children under 16 free Howick Historical Village

one paying person is free, 16+ $16.20 – 1 carer to one paying person is free.

Papatoetoe Pools

Person with a disability $8 and

Train ride $3 per person 1:1 carer is free.

All free

caregivers free

Treasure Island Mini Golf

Rainbows End

Airport – $5 person for first game and

50% and it has to be 1:1

During Monday-Friday only. School holidays and weekends are full price Chipmunks Manukau

additional $2.50 for second game Jump

All special needs up to age 11yo – free and caregiver free

East Auckland

$16 per person (BYO Jump socks) Caregiver can jump for free

Event Cinema Manukau

Bounce and Beyond

$16 per person with a disability –

Full price and caregiver free. For

Paradice Ice Skating

caregivers normal price. On Tuesdays

groups smaller than 20 – babies $4,

Botany/Avondale – $8 per person

only $12.50 including caregiver

1-4yo $8 and 5+ $16. Discounted rates apply over 20 people

Franklin Leisure Pools

Train Rides Panmure on Sundays – caregivers free

$2.50 per person and caregiver is free.

Chipmunks Pakuranga

Children under 16 free

$7 for up to 11yo and if supervised with

for person with a disability

an adult (no outside food and drinks –

Xtreme Entertainment Botany

please remember socks!)

$6 a game for people with a disability

Caregiver can jump for free. Once

Extreme Edge Rockclimbing

West Auckland

a month there is a sensory session

Child entry $12.50 for disabled person

9-10am on a Sunday

incl harness rental and caregiver is free

Chipmunks Henderson

if only supervising

Will offer a free coffee to the

Jump $16 per person (BYO Jump socks)

Manurewa Pools

s u p e r v i s i n g p e r s o n o f a ny c h i l d

$2.10 per person with a community

Fullers ferry

presenting a disability card (weekdays

services card, caregiver is $3.30.

Free adult child per disabled child

only)

Glen Innes Pool

Crystal Mountain

Massey Park Pools Papakura

$2.90 per person with a disability. If

Has some discount but also seems to

$3.20 for person with disability,

caregiver swimming $2.90 or caregiver

vary (best to check first)

caregiver is $3.20. Children under 16

out of the water $1.10. Children under

free

16 free

Miranda Hot Pools

Jump sensory Session East Tamaki

Children 3-13yo $7 (normal price) and

$10 per hour for a child under 110cm

Event Cinema

$9 for adults with a disability

with a spectator only. $16 general

We stg ate – $ 1 5 p e r p e r s o n w i t h

Children under 16 free

Event Cinema Westcity – $8.50 per adult

admission (BYO Jump socks) $18 general

disability. $15 per caregiver. Tuesday

Rocket Ropes

admission. One carer has the option to

is $12

Free supervisor/caregiver for children

jump for free with a child jumping. This is

up to age 16

only valid during sensory sessions

Reading Cinema

Berkley Cinema Takapuna

Magic Broomstick

$10 ticket and $1 caregiver

$13.50 Thursday-Saturday or $8.50

P l e a s e co n t a c t P a u l i n e p r i o r to

Wednesday-Sunday this is for a group

participating. Willing to offer some

booking of over 10 people only

discount

and caregivers. All day pass so they can

Horse Riding Warkworth

Waiwera Thermal Pools

come and go as please, this includes hire

Can offer $5 discount per person,

Full price for person with disability.

of harness and introductory safety briefing

normal price is $50 per person. You

Caregiver free

Extreme Edge West $10 per person to both disabled people

need to book first Jump

Whangaparoa railway

$16 per person (BYO Jump socks)

Inflatable World Glenfield

$7 per person. You will need to ask

Caregiver can jump for free

Caregivers only free

at the ticket window before making

Jump sensory Session, Avondale $10

payment

per hour for a child under 110cm with

Fullers ferry

a spectator only. $17 general admission

Free adult child per disabled child

( BYO J u m p s o c k s ) $ 1 9 g e n e r a l

Xtreme Entertainment Wairau $6 a game for people with a disability.

admission. One carer has the option to

Glenfield Pools

Possible discount on lasertag – enquire

jump for free with a child jumping. This

$ 5 p e r p e r s on $5 p e r c are g i ve r.

first

is only valid during sensory sessions

Children under 16 free

Kiwi Valley

Jump

$5 up to age 5 and $10 per person and

$16 per person (BYO Jump socks)

caregiver free

Caregiver can jump for free

Parakai Pools

Jump sensory Session North Shore

In Wellington, the LeisureCard gives

$12 – 16 years and over with a disability

$10 per hour for a child under 110cm

you access to the following discounts

and child rate $6. Caregivers $12

with a spectator only. $17 general

at their facilities:

Wellington

admission (BYO Jump socks) $19 Pins Henderson

general admission. One carer has the

Swimming pools

$7.50 per game, $15 – 2 games or $20

option to jump for free with a child

50% off casual entry, including spa and

– 3 games for disabled person

jumping. This is only valid during

sauna

sensory sessions Science Playground

Recreation centres

10 people or more during week 20%

Tree Adventures

5 0 % o f f c a s u a l e n t r y, 2 0 % o f f

discount

Community rate – $28.50-$33.50 per

programmes

person depending on which option Sheepworld

and if there is a bigger group then it is

SwimWell

$20 per individual (Contact Sheridan

approx. 20% discount. Need to contact

20% off swimming lessons

to confirm)

them prior to going Club Active

TSB Wallace Art Centre

Reptile Park

20% off group fitness classes and

Donation

Free for caregiver and person with

memberships

disability World Challenge Tag

Wellington City Libraries

Student discount for all games as

Stanmore Bay Pool and Leisure

50% off all reserves, CD and DVD loans

long as people are able to understand

Swimming for person with disability

(excludes items from the Select: Sound

the rules – not suitable for physically

$5.50, Fitness Centre $11, Aqua Class

& Vision Collection)

disabled people due to terrain)

$7 and caregiver is $1

North Auckland / Rodney

Takapuna Pool and Leisure

Wellington Zoo Concession rate of $20 for adult entry

Community Services Card holders Event Cinema Albany

$5.50 and caregivers are free. Children

Zealandia EcoSantuary

$12.50 per person with a disability and

under 16 free

20% off entry

their caregiver

Go and visit the tigers at Auckland Zoo!

Hours of fun at your local Chipmunks Playland

Canterbury

Christchurch Gondola

International Antartic Centre

Cardholder - 20% off standard adult

Cardholder - 20% discount off all

or child ticket. Caregiver - Same as

ticket prices (on direct bookings only.

In Canterbury, children with special

cardholder (not valid with any other

Caregiver - Same as the cardholder.

needs and their carers can get the

discount or promotional offer). Note:

Note: Some restrictions on the

following discounts with a KiwiAble

Limited wheelchair access in Gondola,

Hagglund Ride

card:

please phone to check Jellie Park Recreation & Sports Centre

Air Force Museum

Christchurch City Council Outdoor

Cardholder - 25% discount off all adult

Cardholder - 50% off behind the scenes

Summer Pools

prices. Caregiver - Free entry when

tours

Cardholder - 25% discount off all adult

required to assist

prices. Caregiver - Free entry when Zone Bowling

required to assist. Notes: Outdoor

Mike Pero Motorsport Park at Ruapuna

Cardholder - $6.50 per game. Caregiver

pools are only open during summer

Park

- $6.50 per game

Cardholder - 50% discount . Caregiver Christchurch Tram

- 50% discount. Note: This is for

Antigua Boat Hire

Cardholder - 20% off standard adult

Canterbury Car Club events only. The

Cardholder - $2 off standard hire price

or child ticket. Caregiver - Same as

bank by the Control Tower has limited

up to one hour. Caregiver - Free hire

cardholder. Note: Limited manual

accessibility

when required to assist

wheelchair accessibility. Only one stop

AquaGym

has ramped access. Please phone to

Orana Wildlife Park

clarify

Cardholder - 50% off the standard

Cardholder - $1 off adult classes (casual

admission fee. (Does not apply to

rate) or 10% discount off concession

Clip 'n' Climb

additional cost encounters and cannot

cards. Caregiver - Free entry when

Cardholder - $10 entry. Caregiver -

be used in conjunction with other

required to assist

Free of charge only when required

offers). Caregiver - Same as cardholder.

to assist (some conditions do apply).

Note: Some parts of the viewing

Black Cat Cruises

Note: Weekdays 4pm to 7pm only.

platforms are not wheelchair accessible

Cardholder - $10 off for an Akaroa

Phone ahead to book and advise of any

Harbour Nature Cruise. Caregiver -

support needs and group numbers

Free of charge

Orton Bradley Park Cardholder - 33% off admission fee

Dudley Park Aquatic Centre

Caregiver - Same as cardholder. Note:

Christchurch WildlifeTours

Cardholder - Entry fee of $4.60 for

Some tracks, the old schoolhouse and

Cardholder - $10 discount per person.

adults. Caregiver - Free entry when

stables are not wheelchair accessible

Caregiver - Free entry when required to

required to assist Oxford Community Aquatic Centre

assist (some conditions apply). Note: Limited accessibility, please check

Graham Condon Recreation & Sports

Cardholder - Adult $4.50.

when booking

Centre

Caregiver - Free entry when needed to

Cardholder - 25% discount off all adult

assist

Canterbury WEA

prices. Caregiver - Free entry when

Cardholder - 25% off course fees (day

required to assist

and evening). This discount does not

Pioneer Recreation and Sport Centre Cardholder - 25% discount off all adult

apply to any extra costs connected

Hanmer Springs Forest Camp

prices. Caregiver - Free entry when

to courses. (e.g. photocopying, model

Cardholder - Ensor Lodge Cabin: Adult

required to assist

fees for art courses). Caregiver - Free

$22, child $10 per night. Forestry Hut:

when required to assist. (Subject to

Adult $20, child $9 per night. Self-

Quake City

space on course. Please check when

contained unit: $79 (for two people)

Cardholder - $4 off the adult admission

registering.)

p e r n i g h t . C a re g i ve r - K i w i A b l e

price. Children free if under 15 and

discount rate for Adult support person.

accompanied by a paying adult or

Note: Laundry is not accessible

$8 if under 15 and unaccompanied.

Chipmunks Playland and CafĂŠ Papanui Cardholder - 20% discount off entry

Caregiver - Same as cardholder when

weekdays. 10% discount off entry

Kaiapoi Aquatic Centre

we e ke n d s a n d s c h o o l h o l i d a y s .

Cardholder - $4.50 per adult. Caregiver

Caregiver - Free entry at Chipmunks

- Free entry when required to assist

needed to assist

The Christchurch Court Theatre Taiora: QEII Recreation & Sport Centre

Repertory Theatre

Whale Watch KaikĹ?ura

Cardholder - 25% off all adult prices

Ca rd ho l d e r - Ti c ke t s at S e n i or s ,

Cardholder - 50% discount for

Caregiver - Free entry when required

Community Services Card and Student

cardholders booking and paying direct.

to assist

rates. Caregiver - Tickets at Senior

KiwiAble card must be presented at

rates when accompanying cardholder

check-in. Caregiver - 50% discount

The Court Theatre

when a support person is required

Cardholder - Discount varies per show.

Rawhiti Golf Links

(ticked yes on the card). Note: Limited

Phone to check. Caregiver - Free

Cardholder - 25% off the adult fee.

access. Own wheelchairs cannot be

of charge. Note: Box office must be

Caregiver - 25% off the adult fee. Notes:

taken on board. No accessible toilet on

notified at the time of booking if a

Discounted public holiday rates apply,

the vessel

wheelchair seat is required. This does

please phone for details. Wheelchair

not include tickets sold through the

access is from the south side and a lift

Court Theatre ticketing agency (non-

is available on request

Court Theatre Productions) Tothill's Mazes The Southern Centre

Cardholder - $8 for one maze or $10 for

Cardholder - 25% discount off entry fee

both mazes (summer only). Note: Tower in

Caregiver - Free of charge. Note:

the middle of the maze is not accessible

Birthday Parties: $10 plus entry fee Wharenui Swim Club Selwyn Aquatic Centre

Cardholder - $4.50 (for swimming

Cardholder - 20% off adult prices

only). Caregiver - Free entry when

Caregiver - Free when needed to assist

required to assist

President's Pen

A TIME TO REFLECT, PAT OURSELVES ON THE BACK, BE THANKFUL AND LOOK FORWARD By Kim Porthouse

As the festive season descends upon us it is time to reflect on the year behind us, revel in our successes, pat ourselves on the back for meeting the challenges that have come our way and plan for the next year. COVID-19 has certainly brought us all challenges we were never expecting to face, and I spoke of some of these in my last column, so won’t be dwelling on them again. Instead I am choosing to now think of all the positives that the year brought. Although COVID impacted on all of them and increased the challenges within them, it only makes me prouder of the year’s achievements. For me personally, I reflect on my oldest son’s marriage, Brendon and I moving into a new home, the renovations of that home, travel (within NZ) to visit family and celebrate a niece’s first birthday, my foot surgery that promises to reduce pain and improve mobility, Brendon’s incredible adaptation over the past year to being a school leaver and having to build a new normal, and his general (if somewhat grumpy at times) resilience to the changes COVID-19 bought to his life.

I have also become so much more thankful – of mine and my family’s health, of the friends I have, for the job I have, and of the management of COVID in our country and the freedoms we have. My wish is that all of you are able to take a moment and identify the blessings and the positives that have come your way this year and take those gifts to look forward to Christmas and the new year ahead. The positive work of the NZDSA Despite COVID-19 curbing both local and national events, the NZDSA has also had reasons to celebrate 2020. A lot of work has gone on behind the scenes over recent years to bring the NZDSA into the 21st century by building database and website capabilities that will better serve the online needs of our families/whānau as well as the carers and professionals who support our community. The culmination was the launch of our new website on World Down Syndrome Day which has opened up so much more information and resources to those who need them.

A good variety of resources have been updated and uploaded to the resources section of the website, including the very recently updated ‘Living with Down syndrome’ booklet, and there is a huge variety of interesting and informative articles accessible via the support and information section. I’d like to remind you that if you haven’t already logged on via the email that was sent to you as a current member, then I strongly urge you to do so. I’m sure you’ll enjoy perusing the website. In the future it is via the website that you will renew and update your membership. If you haven’t seen an email we may not have your correct email address, so please contact Linda via 0800 693724. Over 2020 we have also been building an improved social media presence which has enabled us to provide and share more information to the wider Down syndrome community. Like others, we have also embraced the Zoom platform for connecting with families, each other, and other organisations not only to conduct

meetings but also to host webinars and provide education and support. In another project this year we collaborated with Plunket to create an educational resource for their nurses which should see better service provision and help provided to the newest families in our community. As always and in line with our vision that all people with Down syndrome are equal and valued members of their community, fulfilling their goals, the NZDSA has continued to advocate for the rights and inclusion of people with Down syndrome at a national level. So all in all many good things have come out of 2020 to be thankful for, and we will continue to build on these positives in the year ahead. I wish you all a blessed festive season, relaxing holidays and prosperity in the new year.

The Governor-General Dame Patsy with Ava Saba

GOVERNORGENERAL HONOURS GREAT ACHIEVERS Governor-General Dame Patsy hosted the 30th Frances Clarke Memorial Awards on October 8. The awards recognise great achievement in the Wellington Down Syndrome community, and this year the guest speaker was Director-General of Health, Dr Ashley Bloomfield. The first winner of the morning was Ava Saba, from the Wairarapa. She is a keen dancer and has achieved level 4 highly commended in the Dance New Zealand Made Syllabus. Her favourite dance styles are jazz and hip hop. She receives the award for the 16 and under category. Michael Holdsworth was the winner of the 16 and over category for his work with IHC and as a pianist.

He is a mentor at the IHC library, and has played piano since he was a child. Michael has been on hand to play the piano at almost every Frances Clarke Memorial Award ceremony right back to the first one 30 years ago. The winner of the community category was Gordon Cumming. Gordon was recognised for his work mentoring KÄ piti group: The Independence Collective. This group of young entrepreneurs with intellectual disabilities, with the guidance of Gordon, have worked together to become their own bosses and start a micro-business selling their own brand of beer, Change Maker.

Michael Holdsworth gets his award from the Governor-General

Gordon, a community hero

Gordon Cumming with Dame Patsy

Heide Jones presents Dame Patsy with a gift

Gordon Cumming, the man behind the scenes of the Independent Collective and their beer brewing enterprise Change Maker, was given one of three awards at the Wellington Down Syndrome Association's Frances Clarke Memorial Awards yesterday at Government House. Gordon was awarded the Outstanding Community Contribution Award, recognising his ability in helping transform the lives of people with disabilities by thinking outside the square, for his team work and determination. Gordon believes in providing a hand up for the special needs community - not a handout. He has been instrumental in assisting the Independence Collective develop a beer brewing micro enterprise called Change Maker based out of KÄ piti. "The idea is that eventually they will be able to run this business on their own," Gordon said. "The next step for me is a nationwide seller network which is something we are working on at the moment." Gordon believes there is nothing to stop someone with an intellectual disability running a business. "For all five of us it's an incredible adventure, an amazing journey and a huge learning curve. "Everything we do is always a learning process." He was nominated by Neville Pugh who is part of the Wellington Down Syndrome Association and is one of the guys from the Independent Collective behind the Change Maker beer brewing success. NZ Herald

Ryan Stewart (left) poses with other winners

SPECIAL OLYMPICS TRAINING, COMPETING, SUCCEEDING Special Olympics New Zealand athletes have been excited to get back into competition. Laura Davis and Ryan Stewart report from their events.

Special Olympics New Zealand (SONZ) last month held their first central North Island swimming tournament since COVID-19 lockdown. This was very exciting and 12 clubs arrived in Te Awamutu with 105 athletes, coaches and families for a fun day of competing, meeting friends and heaps of fun. Athlete Laura Davis is 25-years-old and belongs to Howick-Pakuranga Special Olympics aquatics team. “We went to Te Awamutu recently for our first competition since lockdown and first for the year, which I was very excited about,” tells Laura. She said that swimmers in Auckland couldn't go back to swim training for longer than the rest of the country, “so I was feeling a bit unfit, but I have been training twice a week to try and get faster again”. Laura said she likes going to Te Awamutu for swimming as she gets to see her friends from other teams that she know. “And it is a nice pool, with friendly volunteers that help us get to our races on time.” “Our team had a good day, and I tried my first backstroke race, which I wasn't too sure about, but I completed it and my team were very supportive.

Ryan is constantly improving his personal bests

“I didn't do very well but have been working hard to get better and more confident for next time, just like the motto, I was brave in my attempt.” Special Olympics competitions are all about providing athletes with the opportunity to experience the benefits of sports, from improving their skills to making friends with athletes from all over the country and as Laura explains, the opportunity to compete in the spirt of the Special Olympics motto: “Let me win, but if I cannot win, let me be brave in the attempt”. Auckland athlete Ryan Stewart from Otago and four other SONZ athletes in October travelled to the New Zealand Powerlifting Federation 2020 National Championships in Christchurch. Ryan is no stranger to powerlifting, having competed since 2011 and has had great success since. He greatly enjoyed the chance to meet other powerlifters and compete. “It was really good, I got to meet the Canterbury, Howick-Pakuranga and Waikato athletes”. “My favourite moment, I would probably have to say was in Christchurch, there I came second place in the open 59kg class.” Along with achieving second place Ryan also

Laura Davis (left) shows off her ribbons

impressively squatted 95kg and deadlifted 140kg. Only weeks later, Ryan showed quick improvement in a local Southland SONZ club competition squatting 100kg and deadlifting 150kg. The SONZ community is super proud of Ryan and the other athletes’ achievements, and we can’t wait to see what Ryan does next.

ADRENALINE AND ADVENTURE RUNS THROUGH THE VEINS OF THE LATZ SIBLINGS By Andrea Heffernan and Annabelle Latz

Conquering personal challenges seems to run through the veins of the Latz family. Ski enthusiast, Nick Latz, attended the Champion Centre more than 35 years ago. He started skiing at the age of eight under the wing of Skiing for the Disabled, with whom he spends almost every Saturday in winter up on the slopes training at Mt Hutt. Adding to that fun, he also enjoys a handful of ski weeks at both Mt Hutt and in Central Otago. In 2013, Nick won a bronze medal in the Alpine Skiing Intermediate Giant Slalom at the 10th Special Olympics World Winter Games, in South Korea. Other than winter skiing, Nick keeps fit at the gym where he enjoys the treadmill and lifting a few weights. He’s a familiar face there and enjoys the social element of his training. He also loves to walk Brix, the family’s terrier on Waikuku Beach and up in the North Canterbury foothills. Once a week Nick looks forward to attending Learn Active in Christchurch, where he goes climbing, does river rope crossings, hiking and also learns valuable life skills. He has his own Facebook page and loves to upload his photos about his many activities. Nick also loves to dance! He is currently planning his 40th birthday celebrations next March, which

will include some great food, drinks and music. Music is a passion that runs in his family and he’s enjoyed many live concerts over the years; David Bowie, The Rolling Stones and Joe Cocker to name a few. Nick lives independently in a self-contained unit in Rangiora, where a support worker visits in the evenings while he cooks his own dinner. Nick will often prepare a meal in the crockpot or use his Weber barbeque to cook some meat, and he makes ‘the best’ salads. However, he does love going out for a curry with his family. Chocolate mousse will always be his number one dessert when he’s at his parents’ house for a catch up, although that favourite is a rarity! Nick works part-time at F.O.D (Fools of Desire), a café in Rangiora, where he washes dishes and enjoys the camaraderie with his workmates. On his morning break you will see him sipping on a cup of Bell tea. Nick’s parents Kate and Peter Latz say that the Champion Centre literally saved them after Nick was born. ‘From those initial feelings of being completely at a loss, we were reassured within hours of Nick’s birth that not only was help at hand, but that there was far more that was normal

Nick Latz and Annabelle walking and laughing

Nick and his ski medal

about our baby than not normal, and we should treat him as the precious baby boy that he was.’ Kate recalls that from that first contact with Patricia Champion, to the weekly gatherings with other parents and their children and babies, that they were in an environment of 100% positivity. With help from the most amazing therapists, she and Peter learnt very quickly how to ensure that Nick received the best possible support to help him learn and develop. ‘As parents, we celebrated every milestone big and small and our initial despair became our greatest joy as we watched our beautiful boy embrace life,’ says Kate. Kate and Peter’s message to other parents is straightforward; ‘never give up, and seek help from the Champion Centre, because there is no better place for families and children to thrive.’ To recognise the positive impact the Champion Centre had on Nick all those years ago, his little sister Annabelle will be running the Tarawera 100 miler Ultramarathon, in Rotorua in February next year. Annabelle is raising money for the Champion Centre. ‘These moments of madness are even more meaningful and robust when there is a focus of getting behind a great cause. It’s

a privilege to run ultramarathons, and an even bigger privilege to have Nick as my big brother, and have this opportunity to raise money for these youngsters who are starting on their very special journey,’ says Annabelle. ‘He’s grown into an awesome, confident guy, and that’s largely thanks to his early years at The Champion Centre. And he’s a rock n’ roller, (not to mention a massive ski bunny) from way back, so it’s fitting that the funds I raise will be going straight to The Champion Centre’s music programme.’ ‘As we’ve said in our family, Down syndrome is what Nick has, not what he is,’ says Annabelle.

To contribute towards Annabelle’s fundraising efforts: https://givealittle.co.nz/fundraiser/ httpswwwchampioncentreorgnz To l e a r n m o re a b o u t t h e Ce n t re ’s m u s i c programme: https://www.championcentre.org.nz/learningthrough-musical-play.html

IHC Library

Some new resources in the IHC library just in time for summer reading.

Up, not down syndrome: uplifting lessons learned from raising a son with Trisomy 21 by Nancy M Schwartz Summary: "When Alex is born with Down Syndrome (Trisomy 21) the author and her family decide to take care of him at home against the advice of doctors. The resulting life-lessons have taught the author that the happiness and joy that Alex brings is more than worth the struggle of parenting"-- Provided by publisher. Up, Not Down Syndrome is a love letter and a map. Experience how it feels to think your life is over after having an unlovable baby. At first the loss seems impossible to overcome. Alex becomes the author's greatest teacher. Love is stronger than fear. Everyone has gifts. The book consists of three parts: the story, the lessons Alex taught the writer and Alex's perspective. Up, Not Down Syndrome is a promise to stay positive, no matter what: up, not down. Nancy's journey gets to the core of what it is to be human:

My friend has Down syndrome by Kaitlyn Duling Summary: "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

My life with Down syndrome by Mari Schuh Summary: 'Meet Peter! H e l ove s t h e d r u m s and gym class. He also has Down Syndrome. Pe te r i s re a l a n d s o are his experiences. Learn about his life in this illustrated narrative nonfiction picture book for elementary students. Kids are naturally curious about differences and disabilities. Peter sheds light on his life, with the help of experienced children's author Mari Schuh. He's not defined by his condition, but he does some things differently than neurotypical people. Beautiful illustrations and a dyslexic-friendly font promote accessibility. Includes tips for kids about interacting with someone who has Down Syndrome.'

What happens when someone in my family has Down syndrome by Jill and Sam Keppeler Summary: "Everyone on Earth is different. Kids who have someone in their family with Down syndrome might wonder about their family member's unique differences. This title will help children who have questions about Down syndrome. What is it and how is their family member different? How can young readers respond to questions from their own friends about their family member? The ageappropriate text and full-colour photographs presented in this sensitively written book will help children tackle questions and situations that might arise"â€”Provided by publisher. A great book for primary age siblings. It addresses the reality of having a sibling with a disability and how that can impact on a childâ€™s everyday life and how they feel about that.

More Alike Than Different: My Life with Down Syndrome by David Egan with Kathleen Egan In this inspiring memoir, David Egan tells his own story, authentically describing a life of maximizing his abilities, a s h e a d vo c a te s fo r himself and for all other people with disabilities. This book is yet another first in a life that has seen many firsts, a life buoyed by an optimistic perspective that refuses to be limited by stereotypes and the low expectations of others. As he says in the introduction, "You see there is an upside to Down. It has made me look at the words 'abilities' and 'disabilities' in a very different way than most of the world. A better way. A more inclusive way. A smarter way. I use the word 'smarter' very deliberately because one of the biggest perceptions of people with intellectual disabilities is that we are not smart." In describing his personal challenges and goals, he also conveys valuable lessons that apply to all people: the importance of a supporting family and friends; the need for others to see him and other people with disabilities as persons first, not just as examples of a diagnosis; the power of inclusion in school settings and community activities; the encouraging role that sports can play; the need for society to focus on our shared humanity despite differences; how to allow yourself to dream and to imagine possibilities; and much more. Please contact the 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

SITUATIONS VACANT Two positions have recently become available within the NZDSA • •

National Administrator & Finance Officer – 15 hours per week Administration Support Officer – 5 hours per week.

Applications close 31 December. For full details on these positions please go to www.nzdsa.org.nz/news or contact nzdsai@xtra.co.nz

NZDSA Notices

Numicon Kits

Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2021. Numicon is a multi-sensory, structured maths programme. If you would like to know more

Rose Award 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

about Numicon, the website is numicon.co.nz/ If you would like to borrow a kit please contact Linda te Kaat for more information at nzdsai@xtra.co.nz or on 0800 693 725 press 2.

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

Contact Directory

Kim Porthouse

NZDSA Committee

President 021 297 0298 president@nzdsa.org.nz

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

Angelique van der Velden

NZDSA Staff

Diane Burnett

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

Averill Glew

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

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

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

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

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

Regional Liaison Officers

Bev Smith

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA Follow us on Instagram to hear about new resources and see what our communities are up to at nz_down_syndrome Check out the NZDSA's brand new website at nzdsa.org.nz

Our people

Some nice memories from the Recreate Ball in Hamilton

Martin Cropp, 8 years old. His dogs name is Chiquita. Mum Carola, Dad Anthony and brother Thomas (right) Anna now 12 yrs loves to dance and sing (centre left)

Michael Dodds at the All Blacks match (centre right) Michael Holdsworth and Dr Ashley Bloomfield demonstarting the COVID shake (right)

Me and my pet

Grace Moreton with Freddie

Matthew Peachey with Jess

Robert Nelson with Lochy

Gordon Minehan with Daisy

Anahera Daniel with Licorice

Emily Webber with Cinnamon