CHAT 21 Autumn edition

CHAT 21

Issue 77, Autumn 2019

CO M M U NICAT IO N | HOL ISTIC | ADVOCAC Y | TAONGA

Journal About & For The New Zealand Down Syndrome Community ISSN 11776323

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Contents World Down Syndrome Day celebrations 2019

From the Editor 4

Going Flatting

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Down Write Brilliant

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Note from the National Executive Officer

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ADSA: Our New Look

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President's pen

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Sony Camp

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New Zealand athletes perform with merit at World Games

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Gentle guide to help parents enjoy their children

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CHAT 21 invites readers to join educational conversation

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IHC Resources around independent living

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NZDSA notices

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Contact directory

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Me and my pet

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We hope you will enjoy this action-packed edition of CHAT 21.

Thanks to your fantastic contributions the NZDSA is able to present a magazine with plenty of WDSD celebrations from all over the country.

Our main feature by Kaye Young about setting up a flat for her son James will be of great interest to many families and I also want to draw your attention to the IHC resources further back that cover the same subject.

In response to feedback from our members we are launching a new education series written by Margi Leech, as well as a series specifically focused on the youngest age-groups and early intervention. We want to thank the experts at the Champion Centre in Christchurch for providing us with a regular contribution.

In this edition we are also looking back at the recent World Special Olympics in Abu Dhabi. Our team performed with incredible courage and determination to represent our country in a difficult week and bring home a host of medals.

Most of our members will be drawn to the inside back page where you can find the new Your Pets section. We have had plenty of emails on this subject but please keep them coming.

If you have any comments, suggestions or ideas, don’t hesitate to contact me on editor@nzdsa.org.nz

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

Coen and Bella 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.

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By Diane Burnett

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ADSA Buddy Walk Leaves No One Behind

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Leave No One Behind is the key message behind Down Syndrome International’s (DSi) 2019 World Down Syndrome Day campaign and it is being embraced in our community.

During the 14th Buddy Walk in Auckland we saw firsthand the support, opportunities and independence our families, friends and individuals are providing our members with Down syndrome.

From Emma Sykes and Laura Harkins producing and selling their homemade candles (Downlights.co.nz) and soaps to Emily Leech, promoting and selling her Pets Rock products (ynot.nz), to the amazing performances of MC Edward Borkin, the Heroez Cheerleading group, dancer Jade Laughton, singer and performer Emma Ferens.

Then, at the end of the day, while the tents were coming down and everyone was tidying up to make their way home, a group of members jumped up on stage to dance, sing and show off their talents too.

The walk was the highlight of the day. We started with a pre-walk warm-up run by JUMP JAM, then headed off on the 3.5km walk at 10am.

Along the route volunteers provided encouragement, high-fives and distance checks, while a selection of superheroes mixed and mingled and delighted the kids all the way to the end. At the finish line everyone got a certificate and a banana to get their sugar and energy levels back up again.

For the young there was a special pre-school play area supported by the Ellerslie Toy Library, farm animals and rabbits to pat and feed, four bouncy castles, three climbing walls, a merry-go-round, 4x4 jeeps, the amazing magician Magic Maize, face-

CHAT 21 | Issue 77, Autumn 2019

painters, and representatives from Special Olympics Football (soccer) running a skills and general kickaround session.

To help fill our bellies we had the ever-popular sausage sizzle with bacon butties to boot, a wellstocked cake stall with a mix of cakes, slices, cupcakes and bliss balls with lots of gluten free options, two food trucks selling crepes and gluten free pasta, and cold drinks.

The Cookie Project also had a stall selling their delicious butter cookies. The Cookie Project is a social enterprise that employs people with disabilities to make cookies that spark joy (facebook.com/ thecookieprojectnz).

To help fundraise on the day, the silent auction offered up a variety of products and services to bid on and the raffle had seven fabulous prizes on offer.

The tailored $5 Lucky Dip bags were filled with lots of fun things for the kids and our new I AM ME t-shirts were on sale and were very popular.

We also had ten members supporting fundraising efforts via Everyday Hero, raising over $10,000 collectively with the top three individuals receiving prizes for their efforts to-date.

This year we engaged with ADSA's Social Clubs programme leader Grace Cussell to get our young adults more involved and helping with on-the-day duties. This is something we will be focussing more on next year and into the future.

Our 14th annual Buddy Walk was a wonderful day of celebration, bringing us all together and leaving no one behind.

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NZDSA celebrating WDSD in Auckland

By Diane Burnett

As the representative for the Zone1A on the NZDSA Governance Committee, I had the pleasure and privilege of taking morning tea along to the central Auckland Music and Fun Playgroups to celebrate World Down Syndrome Day. The group was started over five years ago by a mum with a young boy with Down syndrome with the help of their recently retired Auckland District Health Board paediatric therapists Margaret Davidson and Marjorie Blakeley, who both generously volunteer their time and expertise to support our pre-school children in their early development, as well as their siblings and parents/caregivers.

These days they run the group once a fortnight as two sessions, one in the morning for toddlers aged

World Down Syndrome Day Celebrations 2019

18-months to five and one in the afternoon for babies from 0-18 months.

The groups are held at The Community of St Luke church in Remuera and have a gold coin donation for tea/coffee and use of the room.

For me, it was the perfect opportunity to recognise and thank these two wonderful women who have given so much to our community over their lives and continue to do so through these two groups.

It was also a way for us to celebrate World Down Syndrome Day with some of our newest members and to explain a bit about the NZDSA, what the NZDSA does for our community nationally and the difference between the Auckland Down Syndrome Association (ADSA) and the NZDSA.

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Warriors host Auckland Down sydrome community on WDSD

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Bubbles and food in the Manawatu

WDSD in the Wairarapa

ABCD Group celebrated World Down Syndrome Day on the day itself, 21 March at the Victoria Esplanade, Palmerston North.

We celebrated early in the evening by bringing takeaways to have dinner together, wearing lots of brightly-coloured or odd socks.

The group blew lots of bubbles that floated throughout the playground.

We also brought flowers to brighten up the kitchen in the children’s playground and after the celebrations we took the flowers to the local mosque as a sign of remembrance to the victims of the attacks in Christchurch.

We all really enjoyed getting together to celebrate World Down Syndrome Day 2019.

By Sharon Sheard

Alex, Ben, and Paddy from Wairarapa College cutting their cake to celebrate World Down Syndrome Day.

Northland Celebrates World Down Syndrome Day

More than 170 Northlanders gathered together to celebrate World Down Syndrome Day by walking Whangārei’s Hatea Loop.

Dressed in orange and purple – the colours of Northland Down Syndrome Support Group who organised the event – the walkers included children and adults with Down syndrome, their families and extended whānau, and others whose lives they have touched.

The theme for the walk was ‘Lots of Rocks’. It gets pretty hot in Northland for wearing lots of socks, so the theme was adapted to link it to the popular local pastime of hiding painted rocks around Whangārei.

The rocks were donated by local business, Greenfingers, and painted by children at Morningside School and Kamo Primary School. There are now

World Down Syndrome Day Celebrations 2019

forty orange and purple rocks hiding around the Hatea Loop for future walkers to find. All are painted in purple, orange and white and marked ‘Northland Down Syndrome Support Group’ so they will continue to raise awareness for months to come.

Organisers Kathryn Sadgrove and Jo Morrison, were delighted with the turn-out. “This is the first year we have run this event and we were so excited that so many people came to walk with us.”

The organisers were especially touched by the fantastic response of the local business community who had provided prizes and support.

More information about Northland Down Syndrome Support Group can be found at www.NorthlandDSSG.org.

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By Coen Lammers

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Magic in the air at Canterbury WDSD

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A wide range of ages from the Canterbury Down syndrome community gathered in Rolleston, 25km south of Christchurch, to celebrate World Down Syndrome Day. With many of our members moving to towns on the fringes of Christchurch after the Canterbury earthquakes, the local committee was happy to accept the invitation from the brand-new Rolleston College who kindly opened their wonderful facility for the WDSD celebrations.

The large group was warmed up by dance instructors from Move, the instructor mentoring programme of Jolt Dance, the hugely successful mixed ability dance group.

These impressive, confident young adults with Down syndrome put the parents and the younger ones through their paces with a variety of fun dance moves.

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Once everyone had captured their breath, the stage was set for Melanie Poppins who enthralled her audience from all ages with music and magic tricks.

The young ones could just not get enough of Melanie’s tricks and jokes, but the star of the show was the magic bunny who appeared out of thin air and didn’t mind being patted by a long queue of admiring fans.

The afternoon was wrapped up with two massive cakes and a large assortment of ice cream to leave everyone with a smile on their face and a full tummy.

The cakes were cut by Diane Mulholland as her final official act as chairperson for the Canterbury Down Syndrome Association.

Diane did a fantastic job looking after the Canterbury DS community over the past few years, but with a new family addition on the way, she has decided to focus on the expansion in her household.

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World Down Syndrome Day Celebrations 2019

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Pool party and fun in the sun in Southland for WDSD

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Jack Robinson climbing the wall and Ben Liggett-Jelley climbing

Jessica Liggett-Jelley coming down after climbing the ladder.

the ladder.

The only way is up at Otago WDSD!

By Glen Jelley

Chasing that dream job

The Otago Down Syndrome Association gathered in Wanaka to celebrate World Down Syndrome Day this year.

The group went to Clip n Climb at Base Camp in WÄ naka. We had a reasonable turn out of around eight families which under the circumstances of the horrific times in Christchurch was good.

The kids (and the big kids) had a great time climbing to the top of the walls.

The biggest fun seemed to be jumping off and coming back down on the rope.

Our thoughts are with everyone in Christchurch.

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Going Flat How to make the Enabling Good Lives Vision a reality James Young moved in his own home in 2017 after years of planning by his parents to get the right flatmates, funding and support. KAYE YOUNG hopes this story will help other families on a similar journey.

In 2013, our son James was 18 years old and had three more years of school. Already I was starting to worry about what on Earth he was going to do when he left school.

The same year Enabling Good Lives was launched in Christchurch and I was excited to learn what they had to offer, but sadly only students in their last year of high school were eligible.

The following year, our youngest son started University and left home, and without other support, my husband and I found it a struggle to have a life of our own.

James has Down syndrome, autism and Coeliac disease and on top of that is nonverbal. This meant he could not be left on his own and any breaks for us had to be planned in advance.

We relied on a wonderful carer living in Greenpark, but looking for carers who could help James on weekday evenings became problematic as our ties with high school got smaller.

Enabling Good Lives was a godsend. I attended

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workshops on “Building a Great Vision”, “Networking and Circles of Support”, and encouraged them to run workshops on housing.

We felt that flatting and moving young adults with a disability into their own living arrangements was an important part of having a good life.

When I finished my job at Parent to Parent in May 2014, my focus turned to the plans for James after school.

Enabling Good Lives responded by running four workshops for families who were looking to establish a new home for the disabled family member. They covered: Creating our visions, Community Resources (WINZ, CCC Social Housing Unit, CCS Disability Action, NZCare, Lifemark Design), Legal stuff and Where To From Here.

The workshops highlighted that there was little housing for young people with a disability in the community and the Christchurch City Council had no social housing as the priority was homeless families after the earthquake.

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tting: It crystallised our thoughts that we needed to organise a house of our own in a location of our choice with flatmates that James knows, in order for him to move out from home.

Parent & Family Resource Centre in Auckland had put out a booklet "Four Go Flatting" and it is an invaluable resource. This booklet guided and formulated our thoughts, but we quickly decided that we did not want to be an employer of staff.

We wanted a model that was sustainable and did not rely on us always being there and our thoughts were that a residential provider would provide the staff in our son’s home.

We did not know where to start, so we visited residential providers in Christchurch. Despite high quality of care and homes, we felt that six or more residents in a house and the average age of residents over 40 was too big a gap for our son.

Despite our vision of a residential provider providing staff to a house we had purchased, that was still Plan B and the much easier option was to get James into an existing residential provider.

In September 2015, our NASC assessment was done and we were surprised to be turned down for a residential subsidy given that James is far more delayed than others we saw in residential homes.

Surprisingly, the Notification of Service Coordination letter left out the two most important goals: •

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“I would like to live independently of my family and I will need 24-hour support when I move to a new home.”

“I need a transition from school to vocational activities or activities that I enjoy at the end of 2016.”

After writing to the NASC, the goals were included but the funding remained unchanged. This just made us more determined to purchase a house, find the flatmates for James and go back to the NASC with

Going Flatting

another 3 families with a comprehensive plan.

Now it was 2016 and James’s last year at school, which made me more anxious.

In February, we went to a meeting with EGL to find out who was available to be our EGL Navigator.

In March, we met with staff from Hawksbury Community Living Trust who were able to address some of our concerns and provided us with information for our original plans to build a purposebuilt house. “Four Go Flatting” suggested that the home is no more than five minutes from the family home, so we started looking at existing houses as well as sections in Halswell.

Hawksbury CLT staff met James a couple of times and a meeting around Flexible Funding that same month gave us encouragement on how to move forward.

The Flexible Disability Support funding would enable families to enter into an agreement with a residential provider who would hold the funding and provide staff in a family home to look after a person with a disability.

In April 2016, we called a meeting with parents from James’s high school class, who had sons who could be prospective flatmates for James. We explained our vision and offered to prepare a plan for our four young men in their own house.

A week later we had one family on board, one that decided not to continue and one that would only commit if the best friend of their son was able to be part of the group. The best friend was in the same class as James and his family gave us an immediate yes.

We felt very happy with these flatmates for James, were confident they would get along, but did not know whether the four would bring in enough funding if it was pooled.

All four young men are mobile and we knew that we did not need a purpose-built house. We looked again for four-bedroom houses with two living rooms plus another room that could be used as a bedroom for

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staff.

Almost immediately a house popped up near the Halswell Domain which looked promising. Not only were the bedrooms spacious, the study was big enough for a staff bedroom, the house had 2 living rooms, was made of permanent materials, had a separate laundry, double garage, was fully fenced and had an easy-care garden. It was just what we wanted.

On May 20, 2016, we were the proud owners of this house. We set up a trust to purchase the house and we naïvely thought that James could be a settlor of the trust and that we could use James’s savings.

However, because we are joint Welfare Guardians for James he is not a legal entity and we were not able to settle James’s money into the trust nor was he able to own a house because he is not a legal entity.

The families met with the CEO of Hawksbury CLT and worked out the number of hours the young men would need support and used that to calculate the budget.

This information formed part of a document Roger and I put together called an Independent Living Plan.

This document included one page on each young man, their vision and background, information on the house, type and hours of support required, budgets and contact details.

We took this plan to a meeting with representatives of NASC, EGL and Hawksbury Trust to demonstrate that four families were all serious and intended for their sons to go flatting together in 2017 in the house we had purchased.

NASC then assessed each of the young men to determine their Enabling Good Lives Personal Budget. With EGL, James’s Flexible Disability Support funding from the Ministries of Education, Health and Social Development would be brought together into a personal budget. Instead of Carer Support days or MSD funding, James would have one pot of money which simplified matters enormously.

In the meantime, the families worked with Hawksbury CLT to determine that the budget we had calculated fitted the vision each family had for their son.

Once all families had heard back from the NASC, the four families met and added up the four personal budgets. It was an enormous relief to find that figure was enough to cover our budget based on having one staff person in the house to support the young men at all times.

The families agreed on a moving date of April 3, 2017 and NASC agreed to align the annual review dates of the personal budgets to April 1 to make budgeting easier.

Roger and I had created a draft Memorandum of Understanding, which is not legally binding but which captured in writing all the important points the families needed to agree on. The MOU covered the

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background and purpose of the house, agreements on how the house would be run, liabilities, how we would settle disputes, and how the arrangements could be reviewed. In November, 2017, the MOU was signed by all parties.

Hawksbury CLT had been excellent to deal with and had spent a considerable amount of time and effort getting to know us and helping us. The consensus of all four families was to sign an agreement with Hawksbury CLT as our service provider.

We asked Hawksbury CLT to draw up an agreement with the relationship, roles and responsibilities of each party, and each family signed a separate agreement with the provider.

In Christchurch, there are 12 organisations which are able to provide Flexible Disability Support and can be found on the Enabling Good Lives website: http://www.enablinggoodlives.co.nz/currentdemonstrations/enabling-good-lives-christchurch/ christchurch-resources/purchasing-options-forenabling-good-lives-participants/ These providers are able to assist Enabling Good Lives participants to manage their personal budgets and support them to purchase the supports, services and things that will assist them to lead a good life.

The personal budgets are allocated to Hawksbury CLT so the money does not go through their personal bank accounts. Hawksbury CLT invoices the Ministry of Health every month for the costs of the staff they provide to the house.

The funding is valid for a year and each year before the funding review date of April 1 each family is contacted by the NASC to see if there have been any changes in need before reallocating their EGLPB for another year.

After our 2016 Christmas break, we had 3 more jobs to do: create a transition plan, furnish the house and talk to WINZ. The transition plan was the most important. The other three young men were going to Ara Institute of Canterbury, which offers a course specifically for students with intellectual or learning disabilities from Monday through Thursday each week.

For James, I put together a programme which involved activities in the community, housework, socialising and his volunteer work at Wicketts Dog Groomers.

Roger and I purchased many of the big household items like lounge suites on Trademe. We also hit all the Briscoe sales so it did not take long to purchase all the kitchenware we needed. James’s flatmates took care of the furniture and bedding for their own rooms.

In February 2017, we asked Enabling Good Lives if they could arrange one WINZ case manager for

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James and Mantar, one of the Hawkesbury support staff

all four families. We met with her as a group and individually to explain the situation.

The case manager was given the signed copy of the tenancy agreement which I had created using the website www.tenancy.govt.nz which was crucial for obtaining the Accommodation Supplement.

Each family had to apply for the Accommodation Supplement which is paid directly to the landlord

by WINZ and does not go through the young men’s individual bank accounts.

Lastly, towards the end of March we set up a weekly payment from our son’s bank account to go to Hawksbury CLT to cover the food, petrol, phone and power. The weekly Supported Living Payment from WINZ covered these costs.

One month from the move, three of the young men were 21 and one was 22 and all knew each other well from high school. Our son James did not understand what was happening but the other three were looking forward to the move.

The months that James had at home with us in February and March were an indicator of how isolating it was going to be for James if he stayed at home. I had to work hard arranging for him to see friends or have a life even remotely like ours. It was good for us to have James’s move into his new home to look forward to.

We put together a house manual with instructions to staff and I put together a file of James’s favourite recipes and instructions about gluten free food.

We also drew up a register of all the chattels that had gone into the house. Lastly Roger and I used

Going Flatting

a Communication Passport to tell staff everything they needed to know about James; communication, health, his weekly programme, things he could do, things he could not do, safety concerns and so on.

The big day arrived on April 3rd, 2017 and James formally moved in on the Monday morning. He had been at the house for some of the weekend and week before as Roger slept over with James in his new bedroom.

The staff person who had supported James at home in the interim months was the first staff person to work in the house. He was there to greet James and his flatmates as everyone moved in over the next couple of days.

Gradually James met the other male staff when they were rostered on to do either the 7am to 3pm shift or the 3pm to 11pm shift. Those who did the last shift also slept over.

There are 3 permanent staff and up to 3 “Permanent Relief Team” staff who can work in our house as well as other Hawksbury CLT houses.

We handed over our old Honda Odyssey for the staff to transport five big men around the city.

As the months passed the young men settled into a routine. They are very happy in their new home but regularly go to their family home at weekends for the day or whole weekend. Quickly they decided it was more fun staying in their own home, than going back to the family home, so most of them only go home for one day each weekend.

The young men do things together but during the week they tend to head in different directions

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James with his flatmates

particularly once they finished at Ara Institute of Canterbury.

Initially the parents, young men and staff had monthly family meetings but this has now settled down to once a quarter. In the meetings we air any concerns, talk about finances and have a say about what our sons could be doing and set dates for events. The staff have had to get used to having two bosses; parents and management of Hawksbury CLT. We organised a house warming party for neighbours, friends, classmates and extended family to come and have a look, followed by a Christmas Party for the families, young men and staff.

Our young men are all friends and want to flat together hence there are no behavioural issues between them. The flatmates have “lifted their game” and all understand that they have to cook with support once a week and have chores to do.

Hawksbury CLT every month sends each parent a “Flexible Disability Support Monthly Purchase Unit Summary” which shows the opening balance of the number of units in their EGLPB (each unit is worth $10), the number of units spent on staff costs and the closing balance at the end of the month.

Each month the parents can see on the “Personal Finance” report what their son’s quarter share of the grocery bill and power bill has been and whether it needs a top up.

Finally we get the “House Account” which summarises the total of the grocery bill, petrol bill, power and phone bill for the month as a check on how the staff spend the money of the flatmates on day to day expenses.

Parents still need to top up for clothes and incidentals

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as none of the young men at present have regular part time work.

We now also get a feedback report from staff on what the young men are doing, which is reassuring for parents.

We have not had any major issues, but small things have arisen, like how we will be able to fund a replacement for the old car.

It is possible we may lose some staff, but until now there has been no staff turnover.

Good communication and good documentation is the key and where this is missing parents and staff are working through issues that arise.

It is now two years since the young men moved in and they are planning a BBQ with friends from school and later this year the young men want to go to Queenstown for a few days.

The most important thing is that the young men are well supported, making their own choices, are contributing members of the community through the volunteer work they do and are happy.

Roger and I have fulfilled our vision of our son living independently of us in a housing model that is sustainable and does not rely on us always being there.

By purchasing a house in a location of our choice with flatmates of our son’s choice supported by a Flexible Disability Support Provider we have been able to fulfil the Enabling Good Lives Vision. It might be worth checking those out. http://www.enablinggoodlives.co.nz/about-egl/eglapproach/vision/

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A Magazine By People With Down Syndrome, For People With Down Syndrome.

We are Mrs and Mr Vaccarino

By Vinnie Vaccarino

Down Write Brilliant

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On January 12th at St Luke’s Church in Havelock North in Hawkes Bay everything looked amazing and was ready to have perfect wedding for me and Rachel.

I had a best man Gareth Smith and a groomsman Benji Oemcke.

Rachel had three bridesmaids, our sisters Siobhan Vaccarino, Abbie Oemcke and a friend Robin Neilson.

We also had three flower girls.

I was nervous standing at the altar waiting for Rachel.

When I saw a perfect bride walk in with her father it was so awesome and I just started crying with tears. I said to Rachel that she was so beautiful, my princess.

We had two people, Pastor Sue Lacey and my Dad marry me and Rachel. My dad did the vows and rings and said you are husband and wife. I kissed Rachel before Dad said you can kiss the bride. My Dad said “Ok, now you can kiss the bride!” everyone laughed when I gave Rachel another kiss.

Our friend played the guitar and sang “Can you feel the love tonight” but he changed some of the words just for me and Rachel. Then we played Dancing Queen and danced out the church and all the people took lots of photos of us.

We then left in the old fancy white car and then this guy gave us a ride to Birdswood Gallery for chitchat with people and afternoon tea. We had more photos and then me and Rachel had a first dance.

Then the talented photographers Toni Larson and Jo took family photos. I did a speech then more photos and then we cut the cake.

We then needed to go and everyone made two long rows and we walked between them and said bye.

Then we drove to a huge mountain and we walked up a path for photographs.

We were tired and hungry so we had a picnic in the car before we went back to Birdswood for dancing, hanging out, speeches, dinner and more dancing.

At the end of the evening we went to Porters Boutique Hotel for our honeymoon. I planned our honeymoon with lots of special things. We had two

Down Write Brilliant

nights at the hotel in Havelock North hotel and then two days in Napier.

We did not do what I had planned because my wife got very sick. I was very, very, very sad and I phoned for help. She got better but was sick all the time while we were away and I helped to look after Rachel.

We then went back home to Palmerston North and my parents surprised us and booked a hotel for us to stay at for a couple of days. We loved that.

On January 19th we had another celebration in Palmerston North which was lots of fun. I enjoyed getting ready for the blessing and Rachel looked very beautiful.

We had the wedding blessing at an old small church near our house and I loved how my sister and her friend Rebekah decorated the church. We walked down the aisle together and a friend shared a message and served us communion.

We had lots of photographs and then went to my parents’ house for a party. We had speeches, our first dance, lots of dancing and dessert.

Our friends from our dance group did two special things for me and Rachel: a special song and dance to Uptown Girl and a Haka. It was incredible.

We had a great party, it was very late when we left and went to a hotel.

I think it is very awesome for a young man with Down syndrome to get married to a perfect bride.

I am so happy.

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Carlos the globetrotter Interviewed by Katrina Sneath Can you please tell me about your background?

Well, my background is that I was from Germany but somehow ended up in Bolivia.

I am proud of everything in my life and the marvellous things that I have received. Well, in Bolivia I was in a co-ed school.

The most wonderful place in past times was in Sydney.

What is it like to have a disability (as some people ask?)

Having Down syndrome it is not a disability. Disability it’s not to try.

What qualifications do you have?

I am a professional photographer, awarded from university and the polytechnic, I can speak five languages which are Spanish, English, German, Portuguese and French.

I am also an international swimmer in Special Olympics.

Should people with disabilities be treated differently?

People with Down syndrome should be treated equally, like all human beings.

If someone bullied you, who would you reach to for support?

I would reach to parents/caregiver, police and my lawyer.

Down Write Brilliant

Once you have talked to someone, what support would be given or what would you do?

If bullies are treating me badly I would tell them to back off and talk with my parents or to the police, and the support of my parents or the police would count.

The support from my parents would be calling the police or talk to the parents of bullies. By making an agreement or if that doesn’t work maybe they can separate us for good.

What do you love to do with family and friends?

Well, going to the movies, just having them around, travelling around with them and taking selfies, enjoying Karaoke, experiencing the nature by being surrounded by wild animals, camping and bush walking to take photos of waterfalls.

When you travel, can you please tell me what you like about the culture?

Well, the music, the artisans, the architecture, the panoramic views, cultured foods, Mexican dance and music.

What advice would you tell people with disabilities about advocacy?

People with disabilities will appreciate everything in life and it doesn’t matter what they do as long as they can put in perseverance and dedication.

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Hannah Proctor working hard at Footsteps Christian Pre-School

My job

By Hannah Proctor About three years ago, when I was still at school, I was given an opportunity to try work experience in a preschool, Footsteps Christan Pre-School, in Christchurch.

My teacher aide came with me to help me twice a week until I was good enough to do my jobs on my own. Then I was able to leave school and go to work there by myself.

I have a uniform and a special name badge.

I drive with my Mum to her work, and then I walk the rest of the way by myself to get to the pre-school.

My jobs are getting the morning tea plates and drinks ready for the children and doing the dishes afterwards.

I also get things ready for the children for lunch time as well.

I enjoy playing with the children too, and I love working with the teachers.

Last year they asked me to work another day, so now I work three mornings a week. They pay me now too. I feel happy to have a paid job. I like spending my money.

The teachers say they love having me working there.

They’re very kind and they give me lots of hugs.

I love my job.

Down Write Brilliant

04

Notes From the National Executive Officer

Ride for kids, Vinnie, Rachel, Danny and Lesley Harrison

Leave no-one behind

By Zandra Vacarino - National Executive Officer

Kia ora The 21st March is an important date in the global Down syndrome community as we all unite with one voice to celebrate World Down Syndrome Day (WDSD).

WDSD is also an opportunity to generate awareness, to change perceptions, to share key messages and to advocate for actions that will bring about change so that all people with Down syndrome can access and enjoy full citizenship rights.

I am sure that the 2019 theme, “Leave no one behind”, is a message that will resonate with self-advocates, families/whānau and supporters in New Zealand and that they will actively promote and support the call to action.

The theme “Leave no one behind” is not just something to highlight on World Down Syndrome Day but rather a challenge to each of us to do something in 2019 that will ensure that we have contributed to the movement and “Leave no one behind”.

I have decided that in the national systemic advocacy

Leave no-one behind

work that I do that I will be looking and considering whether systems or policies facilitate or block the goal to “Leave no one behind”.

On a more personal note when supporting our son Vincenzo I will be asking myself, “will this help to ensure that Vincenzo is not left behind?”

Please email me on neo@nzdsa.org.nz to let me know what you have done to be a change agent.

World Down Syndrome Day (WDSD) events take time and a team of people to organise, so on behalf of the NZDSA I would like to express my sincere thanks to everyone who attended, hosted and supported WDSD celebrations.

If you would like to see how this event was celebrated around the globe then view World Down Syndrome Day on the Down Syndrome International website: https://www.worlddownsyndromeday2.org/ Share your “What Makes Me Proud” stories Down Syndrome Australia has decided that for World Down Syndrome Day they would tackle lack of understanding about Down syndrome in their community with a “What Makes Me Proud?” campaign.

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in Outdoor Activities which include Archery, Abseiling and Rock Climbing. These activities are challenging and more daunting for some than others, however with the support and encouragement of the instructors, all the participants are able to participate and accomplish their personal goals.

Please take a moment to think about someone in your community who deserves to be acknowledged with a Rose Award and email Linda at nzdsai@xtra. co.nz.

Celebrations and congratulations

The team at National Office had the opportunity to celebrate a wedding in December when Dan te Kaat, who is the designer of CHAT 21, got married to his beautiful Rose. Rose and Dan are regular support buddies at the Youth Development Camps. I am sure you will join the NZDSA National Committee and staff in congratulating Dan and Rose on their marriage.

Stephanie at Ride For Kids

They are asking people with Down syndrome to consider the question and write stories about, “What Makes Me Proud?”

I want to invite self-advocates or a family member to submit “What Makes Me Proud?” stories and we will share your submissions in CHAT21, Ēnews and possibly our website.

Youth Development Camp invitation

The NZDSA is again hosting the Youth Development Camp from the 1st to the 3rd November 2019 at Vaughan Park Retreat Centre, Long Bay, Auckland. We would like to offer all NZDSA youth members (18 plus) the opportunity to apply to their regional group to be nominated to attend this event. If you are interested, please register your interest by emailing neo@nzdsa. org.nz before May 1.

Rose Award

The Rose Award provides the opportunity to acknowledge and thank individuals or organisations who either support individuals with Down syndrome or the wider Down syndrome community, so I want to encourage you all to nominate the great people in your community..

This quarter I have decided that I will nominate all the instructors at Sir Peter Blake Marine Education and Recreation Centre (MERC) for the Rose Award.

The NZDSA hosts Youth Development Camps each year at the MERC where the youngsters participate

CHAT 21 | Issue 77, Autumn 2019

Wedding that changes perceptions

You will have read in Down Write Brilliant that our son Vincenzo got married to his sweetheart Rachel on January 12.

They started dating seven years ago and at the time we thought it would just be a short-lived romance but we were wrong, and after a couple of years they started to share with us that one day they wanted to get engaged and then get married. They got engaged on 28 March 2017 and the wedding day was an incredible day filled with celebrations with family and friends. The venue had to limit numbers so we decided to have a blessing on the 19th January 2019 in Palmerston North for friends who couldn’t attend the wedding.

At times during the wedding day and blessing I reflected on my thoughts when I was first told our beautiful baby son had Down syndrome.

Like most parents we wondered what the future would hold for Vincenzo and we decided that we would commit to providing him with every opportunity to live a fully inclusive life and to support him to achieve the life he wanted.

We had many goals for Vincenzo, but getting married wasn’t a dream that we had considered so it was surreal to see our son waiting for his bride to walk down the aisle and to hear him saying the vows he had written.

I am so thankful that Vincenzo’s goals are bigger than mine. Their wedding is a demonstration of Vincenzo and Rachel’s determination to achieve their goals for their own lives. For the parents and siblings it is a privilege to be sharing this new part of the journey alongside Vincenzo and Rachel as we support them to continue to shape their marriage and future life.

I must add that I have found it interesting that

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ADSA: Our New Look

VIncenzo before his wedding

Vincenzo and Rachel’s marriage seems to have shifted conversational boundaries. While most people are supportive I have certainly encountered prejudices so I have taken those opportunities to create awareness and hopefully challenge perceptions.

Ride for the Kids Manawatu

This year, local Manawatū hero Danny Harrison, organised the third Ride for the Kids motorbike fundraising event. The aim of the Ride for the Kids event was to raise awareness as well as money to support and to provide social engagement opportunities for children and young people in the Manawatū Down syndrome community.

After the bikers and drivers had enjoyed the scenic route that Danny had planned, the Manawatū Down syndrome community had the opportunity to meet the riders and drivers at Wines Bar and Grill, to admire their splendid motorbikes and cars, to spend time together, to enjoy listening or dancing to the sounds of the great band, and of course to eat some delicious food.

The NZDSA is so grateful to everyone involved in organising, sponsoring and supporting this event, especially organisers Danny and Lesley Harrison and Stephanie Dekker from Wines Bar and Grill

NZDSA E-News

The NZDSA regularly distributes the E-News with information, notices, training opportunities or special events to members who have provided us with email addresses. If you don’t receive the E-News and would like regular updates, would you please forward your email address to Jess at hello@nzdsa.org.nz or Linda at nzdsai@xtra.co.nz

A new visual identity has been on the cards since 2012, and it is finally here.

We are excited to present the new Auckland Down Syndrome Association logo, kindly and expertly designed by our long-time supporter and fullservice independent agency Big Communications.

The new logo takes inspiration from within Down syndrome itself, using the extra chromosome in a triangle that represents a number of things: • •

• •

A ‘tri’-angle for ‘tri’-somy 21 A ‘chromosome’ type shape rather than just a straight side An ‘A’ for Auckland A continuum

The existing colours – orange and purple – have been retained as strong block colours with the orange used to identify the extra chromosome from the other two chromosomes. Orange and purple are analogous colours, colours that are next to each other on the colour wheel, which match well, are often found in nature and are harmonious and pleasing to the eye.

Other design elements will be introduced alongside the new logo and we will be rolling out this new look over the next few months, including a fresh new t-shirt design for Buddy Walk.

Hei konei rā Zandra

Leave no-one behind

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President's pen

By Kim Porthouse - NZDSA President

21 candles!, Brendon celebrating his 21st birthday

Welcome to the first issue of CHAT 21 for 2019.

I hope you managed to celebrate World Down Syndrome Day and your family member in some way and share time amongst other like-minded people.

I also hope you all enjoyed the summer and had the chance of a good break.

For me the summer college break which lasts the whole of December and January is always about trying to balance the funding available for carers with annual leave to make sure I meet the care needs of my son over the period as well as spend some quality time with him. Thank goodness for the help of family also over this time because it really is a juggling act.

I’m sure there are many of you who also face similar challenges, but I really hope school holidays or vocational shut downs do not bring too much stress into your life.

If you do find such times challenging, my advice for now is to be vocal if your care needs are not being met, make sure you let your needs assessor know and ask for a review.

Make it known if you need personal care hours, carer relief, respite, buddy hours, or access to any locallyrun school holiday programme.

CHAT 21 | Issue 77, Autumn 2019

Make connections through your local Down syndrome association and talk to other parents, find out what they get in your area, what services work for them.

If you haven’t been accessing a service that you feel could benefit your family member, ask about it and find out how you can access it.

If you don’t know how to contact a local DS group check out the contacts page at the back of this journal or ring 0800 NZDSAI (0800 693 724), then select 3 to connect with your zone rep.

Our last issue listed a range of services from around the country - did you read through them? Were there some you didn’t know about that you thought may be worth investigating for your family member – there were certainly a couple I thought could be avenues to investigate for my son Brendon.

There is also new hope on the horizon with the new transformation of the disability system by which families will choose and access disability services.

It is known as Mana Whaikaha, it has been codesigned by disabled persons and whānau and aims to give disabled people and whānau more choice and control over their lives and the supports they receive.

Hopefully this new system which has been modelled on the Enabling Good Lives vision and principles, will make accessing the help you need an easier process than the current system.

It isn’t necessarily always about getting more funding, but sometimes about making the funding work better for your family.

MidCentral DHB has been trialling the prototype since 1 October 2018 which operates on a try, learn and adjust approach. It will eventually be rolled out across the country (although I’m not sure of the time frame for this).

If you want to know more check out the website https://www.manawhaikaha.co.nz Brendon and I live in the MidCentral DHB catchment area and are about to start the review process under this new system and we will be meeting with a Connector soon.

A Connector is the person who gets to know your family and helps connect you with the services your family and your family member with a disability needs to enable them to have a good life.

Connectors are not the gatekeepers of funding but rather the people who can connect your family to mainstream activities and services as well as more traditional services available in your area.

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I feel positive about the perspective that this model is driven upon and I am looking forward to engaging with it.

Hopefully in the next issue I can give you a brief update on how it is working for us.

It is particularly good timing for us as Brendon just celebrated his 21st birthday and therefore this is his last year at school.

This year will be spent on transition and the move to life after school.

I feel a bit of trepidation around this, not only because Brendon has always really loved school and will miss it but because we live in a small New Zealand town where opportunities can be limited.

However, I am determined to focus on the things Brendon finds joy in and will keep my mind and eyes open and seek out opportunities to bring purpose and achievement into his life.

On a lighter note, in the last edition our Editor introduced the idea of starting a My Pet page where our family members can simply send in a photo of their pet (hopefully they won’t be too shy to be in the photo too) and maybe even a little story or a sentence or two about their pet.

Keep well as we will soon start to head into the winter months and consider getting a flu vaccination for your family member. Those who have heart or respiratory conditions are usually more vulnerable to complications of flu and many are eligible for free vaccination, so consider using this service.

Kim

Sony Camp New Zealand’s first Sony Children’s Holiday Camp was held at Christ’s College school in Christchurch at the end of 2018.

Students and staff from St Margaret’s College and Christ’s College volunteered their time to run the live-in camp for 14 children aged between 10-14 years of age.

Ten of those children were members of the Canterbury Down Syndrome Association.

The children had a fun-filled weekend supported by the students and staff from both schools to enable parents and siblings to have a break.

For some children who attended it was the first time they had ever stayed away from their parents for a weekend.

Stella, one of the youngsters attending said she danced, watched movies and went on the tram.

“I loved being with my buddies Emma and Ashley and all my other friends. I would love to go again next time.”

Young Alex also explained how much fun he had had and he had particularly enjoyed playing basketball with his peers and the students from Christ’s College.

The weekend finished with the families joining the camp for a Christmas lunch, with Santa making a guest appearance.

There was great community support prior to the camp to inform and educate the students and staff volunteering at the camp.

The CDSA parents were overwhelmed with the generosity and support they and their child received.

It was obvious the camp had a positive impact for both the children who attended and the students involved.

It would be fantastic to see other schools take up this wonderful opportunity throughout New Zealand.

By Diane Mulholland

President's Pen

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New Zealand athletes perform with merit at World Games

New Zealand’s delegation to the Special Olympics World Games in Abu Dhabi included 38 athletes with intellectual disabilities, five ‘Unified Partners’ (athletes without an intellectual disability), and 21 coaches, managers and support staff.

The New Zealand team competed in swimming, athletics, bocce, equestrian, basketball, bowling, powerlifting and football at the biggest sports and humanitarian event staged anywhere in the world in 2019.

Special Olympics New Zealand Chief Executive Carolyn Young said the team was treated to an amazing three-hour Opening Ceremony that saw 6,943 athletes from more than 190 countries parade through the Zayed Sports City Stadium.

The ceremony included a super low pass by an Etihad jet, pyrotechnics and a light show, inspiring words from Special Olympics International Chairperson Tim Shriver, and video clips of founder Eunice Kennedy Shriver.

Te Awamutu swimmer Deshan Wallalavita won the gold medal in the 50m butterfly and silver medals in the 100m freestyle event. Fellow Special Olympics Te Awamutu athletes Portia Johnson and Unity Collins claimed bronze and silver medals respectively in the 50m freestyle event.

Special Olympics Waikato athlete Melissa Donoghue scored a bronze medal in the 100m freestyle to add to her silver in the 50m butterfly. Liam Bartley (North Otago) secured a gold medal for the 50m butterfly and bronze in the 100m freestyle.

CHAT 21 | Issue 77, Autumn 2019

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Kelly Nathan, Liam Bartley, Deshan Wallalavita and Melissa Donoghue were all members of the 4 x 50m medley relay team, which won a silver medal.

Wellington athlete Janiece Pollock secured two gold medals in the 100m and the Long Jump. Wellington clubmate, Dominic Faherty won gold in the 200m and came fourth in the 400m. Holly Jones (Thames Valley) won a silver medal in the 100m to go with her bronze in the mini-javelin. Kyle Harpur won silver in the shot put and bronze in the mini javelin, and Matthew Westwood won a bronze medal in the long jump.

Equestrian rider Charlotte Aroa (Waikato) secured a bronze medal in the English Working Trails Level B1 and a bronze in Dressage. All three competitors in the equestrian team also competed in the English Equitation discipline. Amy Batchelor (Canterbury) secured a silver medal (to go with her silver in the Dressage) and her teammate Alexander Goldsack (Bay of Islands) won a silver in Dressage.

The unified mixed football team had a tough tournament with some very competitive games and goals scored. While unified sport is in its infancy in New Zealand it is a concept that is designed to remove barriers and increase awareness across the community of athletes with an intellectual disability.

The team unity, both on and off the field, has been a highlight for both the coaches and players and was a huge success in achieving the goals of unified sport.

Natasha Nicholson (Manawatū) competed in the

singles bocce competition with tough matches against Pakistan and Italy and managed to come home with a bronze medal! Then competing in the unified doubles secured another bronze medal with doubles partner Barbara Duncan (Hawkes Bay).

In a tense competition, James Wilson (HowickPakuranga) won four silver medals in powerlifting (squat, bench press, dead lift and overall). He said he was “proud to be second in the world”.

In bowling, Katie McMilan (Waitakere) secured a silver medal in the singles with a total score of 355, well above her average score. Richard Willmott (Canterbury) and David Nixon (Waikato) both came away with bronze in the men’s singles event.

Suffering an ankle injury to their influential captain, Mark Cressingham, the New Zealand baskeball team worked hard throughout the tournament and secured fourth in their division and were delighted with the win in their final game.

New Zealand’s largest team to ever attend a World Summer Games competed with equal footing on the world’s largest stage with over 170 countries.

The memories from the games and the events leading up to the competition will stay with these athletes for a long time. They have come home a little jaded from the travel but invigorated to get back into competition with their clubs.

New Zealand athletes perform with merit at World Games

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Gentle guide to help parents enjoy their children

By Dr. Susan Foster-Cohen, Champion Centre Director.

The early years

Dr Susan Foster-Cohen, Champion Centre Director.

The Champion Centre in Christchurch has kindly agreed to provide a regular contribution to CHAT 21 to assist parents of young people with Down syndrome. In this edition, Dr Susan Foster-Cohen, Champion Centre Director reviews the guide "Are You Worried About Your Child?"

Are you worried about your child? A guide to support families of children with complex needs and the professional who care for them (This free guide can be downloaded from: http://www. tacinterconnections.com/images/Guide2-toSupport-Families-of-Children-with-Complex-Needs. pdf) A group of professionals from the UK, South Africa, Australia, Italy, Canada, and New Zealand, including The Champion Centre’s founder, Dr Patricia Champion, has compiled this 20-page guide aimed at supporting parents raising children with disabilities to feel less tired and stressed and to enjoy

CHAT 21 | Issue 77, Autumn 2019

life with their child. Written in an accessible style, it consists of five main sections, each one addressed to both parents and professionals and illustrated with comments from parents about their experiences.

The introductory section ends with the following challenge that speaks to the hopes and fears of many parents: Wouldn’t it be nice… …if your child received the same welcome to the world as every child? …if you were seen as the expert on your child by everyone? …if you felt you were listened to and knew people who share you concerns about your child? …if you felt cared for and supported by an understanding community?(p.1) The first of the main sections “Let’s start at the beginning”, explains the guide is “to help you and your family manage everything without getting too stressed and exhausted” as well as “help you create enjoyable moments together with your child every day.”

In other words, it aims to help parents achieve a better quality of life for themselves, their children and their family.

Its call to professionals in this first section is to put their focus on supporting the family to promote the best possible relationship with their child and the wellbeing that it brings.

The second section, entitled ‘Respect”, puts the focus on how families cope with the news that their child has an illness or disability and encourages them to celebrate their arrival as they would any other child.

It reminds parents that all children need love, warm responsive predictable care from their parents, safety and fun, even while it acknowledges the sadness many parents feel.

It encourages parents to find those friends, other parents, and sympathetic professionals who can support them.

It then encourages professionals to recognise the multiple sources of stress in parents, to always ask them about their priorities and to work in partnership to plan a respectful way forward.

“A quality of life”, the third section, addresses causes of stress in lives made overly busy by multiple

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Children enjoying themselves at the Champion Centre

appointments, assessments, and interventions.

It asks parents to identify, through a series of questions, where those stresses lie and what might help.

The questions include “If you have been keeping it all to yourself, can you find someone to talk it over with?” “Does your child sleep badly?” “Are you struggling financially?”

The advice to professionals in this section suggests that not all parents will admit to the levels of stress they are under and may need them to open the conversation and listen carefully to what parents are saying.

It also urges them to put the infant’s quality of life at the centre of their thinking and to help parents get a break from caring if that is what they need.

The fourth section, “Keeping it all together”, is about making sure that early intervention is coordinated, integrated and working towards common aims.

It acknowledges that in many cases, parents are left to pull everything together from an often overwhelming number of different appointments and professionals.

It proposes a key worker model or a multi-disciplinary ‘Team Around the Child’ approach that includes parents as team members and can help avoid them having to answer the same questions over and over again, and of getting different and conflicting information in response to their questions.

Finally, “Getting the Family Back on Track” is about

Gentle guide to help parents enjoy their children

looking towards the future when parents become more confident in parenting their child and feel in charge of their lives.

It includes the sage advice that “one of the best ways of caring for your child is to look after yourself.”

At the same time professionals are reminded that “Families need to find time and energy to enjoy being together, to develop strength and resilience. Families need to move at their own pace without pressure to conform to other people’s timetables”.

But they are also reminded that “while it is a professional instinct to be positive and upbeat about the child, this can sometimes discourage parents from voicing their anxiety and other negative emotions.”

Throughout, the guide is gentle in tone; asking questions to help parents and professionals solve issues for themselves, rather than telling them what to do.

Together with the honest reflections of parents that appear as margin quotes, this guide will help families to understand and express what they experience, encourage good communication between parents and professionals, and introduce both to practical ideas that can help improve quality of life for child and family.

Reviewed by Dr Susan Foster-Cohen, Champion Centre Director.

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CHAT 21 invites readers to join educational conversation

By Margi and Ken Leech

So, you have a child with Down syndrome now?

How will I teach this child?

What shall I teach this child?

Where will this child go to school?

What’s the future after school?

Only parents who have a child with special needs ask these questions pretty early on in their child’s life. We are looking for hope, encouragement and guidance from those who are further along in the journey. For educators who read these articles, they will give you the same insight and encouragement.

We are all in this together.

I am so thankful for the people who came into our lives when Emily was born. Mostly, they were the parents of children just ahead of us as well as those who were on the same journey at the same time.

CHAT 21 is starting a series of education-focused articles, in which we will be sharing our journey and what we learned along the way. We will introduce you to others from all over the world who have made huge contributions to the education of children with Down syndrome.

We invite you to join me on this journey too. Send in your moments of learning and discovery to share with others. If you want to write a complete article, go for it and submit it to editor@nzdsa.org.nz Firstly, enjoy your dearest one. You are the child’s first teacher. Research shows how important you are in the child’s life. When your child looks into your eyes, he/she is learning communication, love and acceptance. No device is needed, unless they are vision impaired. (Get that checked really early on!)

Secondly, play all those games, sing all those songs, go on outings and cuddle your precious one as you would for any child.

Thirdly, consider the use of your phone. I meet so many teachers who are lamenting that children without special needs are coming in to school with very little language or the ability to pay attention and learn.

They can only speak in two or three-word sentences.

Take every opportunity when your child is in the stroller to turn it around and chat with them. If your child is in care - have special times of conversation and play together. I know it’s hard when they also need so much intensive care.

Lastly, these early years are the most important in a child’s life. These are the foundation years. Families that have been impacted by earthquakes know the value of having good foundations.

So, what are the foundations for education?

Love, connection and support to build a strong relationship. Education is all about relationships.

Build great relationships with your child, your partner, your family members, your neighbours and wider communities. Your child belongs to you and all of these communities. They will be enriched by your child.

I’ve lost count of the families who have told me about the positive impact their child has had on their family, friends and community.

Our children make us look beyond ourselves and look for solutions.

Most of the people I will share about in these articles started incredible services in education and health and community involvements as a result of being close to a child with Down syndrome. Love lasts a long time and multiplies as it is shared. As my dear friend Ruth used to say, “Love will find a way!”

Your child has a purpose in our world. Just being here contributes to all of us. We are challenged out of our selfishness. We are challenged towards generosity, patience, kindness and grace. We are reminded that it takes a village to raise a child.

My husband Ken and I were really challenged by these values when Emily lost many of her capabilities in her puberty years. Intelligence does not make a person more valuable, even though our society says it does.

What have Ken and I learned along the way?

Education is the key to a future, but if success is not seen, it’s not the end of the world. Emily began her life with so much promise. She was able to read and write, and order numbers and sequence patterns

Your child has a purpose in our world. Just being here contributes to all of us.

CHAT 21 | Issue 77, Autumn 2019

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before she went to school. I am so thankful for this.

Begin early while you have your child at home and have time to put in the foundations – SLT, learning patterns and sequences, numbers and groupings, language that describes positions (under, over, between, next etc.), holding a pencil and writing names and short words of significance.

Emily’s progress through an intervention programme with Sarah Goodall and primary school was very encouraging. We did have to change schools because of the appalling attitude of senior staff. The move to the new school brought a joy of inclusion.

Watching Emily participate in band, athletics, camps, assembly items, school shows, Library monitor and hang out with friends was a particular delight.

Then puberty kicked in along with a change of school, less inclusive staff attitudes and consequentially bullying, brought devastating consequences. It was a kind of mental breakdown.

She regressed terribly, back to needing support for sleeping, eating, toileting, personal care and dressing. Her voice disappeared and became the occasional whisper. The loss and grief for all of us has been heart-breaking.

Now Emily is 19 and soon to be 20. I am so incredibly thankful that she did not forget how to read and respond to words and numbers. She did not forget her PIN number on her bank card or how to use it!

She continued to play her favourite games on her iPad and family board games. She still whispers when prompted, but recently we have heard her voice - loud and clear! She speaks single words that reflect her understanding of what’s happening. She is making connections again!

We have discovered that we are not alone either. The retreat in October sponsored by the NZDSA was a very special encouragement. It spurred me on to seek again help from the international community.

From my courageous post on the NZ Parent’s Facebook page, several other mothers have contacted me. Books and research papers from the DS communities and Dr Chicoine have helped us.

Emily is now in an adult transition programme where the focus is on personal care, communication and social skills, employment skills, living skills, and literacy and numeracy in life skills.

We also home school Emily every Monday, employing a young woman to work on personal care, homemaking skills and therapeutic horse riding. We set goals for each month: Emily will make Ginger Crunch, following the recipe and using the tools correctly with reducing prompts and support. Our waist lines will survive because the slice is for Grandma’s birthday party coming up. We are researching her future living and daytime activities that will be meaningful and purposeful.

If you are in a tough spot, don’t give up hope.

If you have a pre-schooler, start now. Early childhood intervention starts at 18 months in the UK with purposeful teaching. Sue Buckley and others are at the forefront of this practice and seeing incredible results for some children.

If you have a school-age child, set very clear monthly goals that can be achieved at home and school.

These goals can be measured and talked about. We will write more about these in the coming articles.

Make the most of playing and enjoying life together.

Challenge their brains and thinking. So many behaviour issues with Emily were attributed to her being bored.

Set two small goals to achieve over a month and you will not regret it. We had no idea how to begin with but Emily showed us.

If you want to know more, here are some websites to explore: https://www.ds-int.org/ https://www.dseinternational.org/en-gb/ https://www.dsrf.org/ https://www.inclusive.tki.org.nz/guides/downsyndrome-and-learning/ And of course, please send in your own stories.

CHAT 21 invites readers to join educational conversation

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IHC Resources around independent living Most young adults and their parents want them to be as independent as possible.

The IHC Library has a range of resources to help achieve that goal.

Easy cook book. Volume 2: You simply look and cook

By Joy Graves T h e E a s y C o o k re c i p e s have been designed to help people with a wide range of disabilities to prepare meals independently. The recipes have been planned to provide well balanced and delicious meals when combined with other simple foods.

Recipes in this volume include: heart beef and bacon casserole, sausage and apple bake, stir fried vegetables, carrot cake and rhubarb and apple crumble.

Borrower comments: “We used this in a workshop looking at what resources are easy to read and what are hard. People told us this was one of the easiest to read and lots of people asked where they could get copies for their homes they could learn to cook.”

“A great book, fabulous easy-to-use format.

Shopping cards very useful. although book published outside of NZ, a number of the shopping items are recognisable brands.”

There are 5 books in this series.

M o n i c a a n d D av i d : Educational edition (DVD)

“ E x p l o re s t h e m a r r i a g e of two adults with Down Syndrome and the family who strives to support their needs. Monica and David are blissfully in love and want what other adults have, an independent life.

Full of humour, romance, and everyday family drama, intimate fly-on-the wall footage is used to reveal the complexity of their story. While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go." (Publisher’s website) "Educational Edition Bonus Material: 5 exclusive

CHAT 21 | Issue 77, Autumn 2019

videos feature adults with intellectual disabilities, their families and advocates. Topics are: Employment in the community, Healthy relationships, Independence & families letting go, Dating & sexuality : a conversation with Terri Couwenhoven, Reflections on society : a conversation with Lawrence Carter-Long" - DVD CASE

Four go flatting: the individualised resource handbook

Describes the experiences of four sets of New Zealand parents using individualised funding to set up a flat for their four children who each have an intellectual disability.

Reflecting after the first year, all the families agree the genuine friendship between the flatmates, their experience in the transition house and the parents' willingness to work together provided the best possible start to establishing the house and paved the way for a surprisingly smooth transition.

Review: The following topics are covered: why did we do it? What is individualised funding? Choosing a host organisation, making the numbers work, finding the right flat, running the house, making the flat work, stuff you need to think about.

This is an excellent resource from the Parent & Family Resource Centre consisting of a book and an 18-minute DVD, this latter produced with its usual high quality by Attitude Films. Parents wishing to embark on a similar journey will find this a godsend (as well as a warning, these parents work hard!)

Highly recommended.

IHC would love to hear from you with your queries and to help find the right resource for you.

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

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NZDSA notices Youth Development Camp invitation The NZDSA is again hosting the Youth Development Camp from the 1st to the 3rd November 2019 at Vaughan Park Retreat Centre, Long Bay, Auckland. We would like to offer all NZDSA youth members (18 plus) the opportunity to apply to their regional group to be nominated to attend this event. If you are interested, please register your interest by emailing neo@nzdsa.org.nz before May 1.

Rose Award

These awards provide 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”. Linda will acknowledge the person in CHAT21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

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

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 The Trust Community Foundation Thomas George Maccarthy Trust Eastern & Central Community Trust COGS Christchurch COGS Hamilton COGS Manukau COGS Manawatū/Horowhenua COGS Central Otago COGS Whangārei

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 notices

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NZDSA Committee

Contact directory

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

Gwen Matchitt

Kim Porthouse

Angela Hawke

Diane Burnett

President

Zone 1 Representative

Zone 1 Representative

Wellington & Wairarapa

Northland

Northland/Auckland

021 297 0298

027 246 0160

022 034 6475

president@nzdsa.org.nz

northland@nzdsa.org.nz

auckland@nzdsa.org.nz

Treasurer

Kerry Ryan

Shelley Waters

Zone 3 Representative

Zone 4 Representative

Zone 5 Representative

Zone 6 Representative

Whanganui, Manawatū, Gisborne

Wellington & Wairarapa

Ashburton & all areas above

All areas below Ashburton

& Hawkes Bay

021 108 9505

021 046 0482

027 627 3069

027 356 3229

zone4@nzdsa.org.nz

zone5@nzdsa.org.nz

zone6@nzdsa.org.nz

Vice President Zone 2 Representative Waikato, BOP & Taranaki 027 244 4543 zone2@nzdsa.org.nz

Geraldine Whatnell Averill Glew

zone3@nzdsa.org.nz

NZDSA Staff

Linda te Kaat

National Executive Officer

National Administrator

0800 693 724 ext. 1

0800 693 724 ext. 2

neo@nzdsa.org.nz

nzdsai@xtra.co.nz

Regional Liaison Officers

Jess Waters

Zandra Vaccarino

Christel van Baalen

Donna Higgs-Herrick

Sandra Slattery

Auckland Community

Canterbury Community

Taranaki Community

Liaison Officer

Liaison Officer

Liaison Officer

09 527 0060

021 208 8203

027 604 5786

clo@adsa.org.nz

cdsainc@gmail.com

taranakidownsyndrome@gmail.com

NZDSA Membership

Membership charges are as follows: $30 one year Financial membership fee, $50 one year Affiliate membership fee, $15 one year Self-advocacy membership fee. To obtain full details and a membership form please either email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

Database Updates

The NZDSA would like to update their database. If your details need updating please contact us either by email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

CHAT 21 | Issue 77, Autumn 2019

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

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

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

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you are able to make a donation please either send a cheque to us at P O Box 4142, Shortland St, Auckland, 1140 or direct credit to ASB 123073 0090784 00 using your surname as reference. If you require a receipt please email us to let us know you have made a donation via internet banking by telephoning 0800 693 724 extension 2 or emailing nzdsai@xtra.co.nz. If sending us a cheque please include your address so a receipt can be posted to you.

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Me and my pet

Kristy and 1 of our 3 cats, Mana. Kristy had naming rights to this cat who was dumped at a neighbour's place.

Most of the animals at our place are rescues. Kristy having a cuddle with Lettie, one of our horses. They are good friends.

Sam is 7 months old and our German Wirehaired Pointer Gus is 4 years old. The two are best friends. Gus is amazing motivation for Sam to develop his core strength and he is currently rolling around the house after him. They also nap together and now that Sam is eating solids, Gus can be found very close by under the high chair at meal times...

Here is 13-month-old Louie with the Marvelous Mr Kitty. There has never been a more pulled, poked, patient and purrrfect, pudding of a cat.

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0800 693 724 | nzdsa.org.nz