We Decide.

That is the message people with Down syndrome want New Zealanders to hear loud and clear.

Far too often people with Down syndrome have their decisions made for them, even when they are very capable of making their own choices.

In many cases they are not consulted over the hundreds of small decisions made each day or even the big, life-changing decisions.

“Those decisions make us who we are, but the reality for many people with Down syndrome is that other people are making small as well as significant decisions for them,” Zandra Vaccarino, National Executive Officer of the New Zealand Down Syndrome Association (NZDSA).

Imagine if someone decided when you get up, what you eat, where you go to school, what you do with your money, who your friends are and even the romances you have. For most of us that would be impossible to imagine but for many people with Down syndrome this is their daily reality.

“Often with best intentions these decisions are made by others, but this year we want to remind all of New Zealand to support people with Down syndrome to make their own decisions,” says Vaccarino.

Saturday, March 21 is World Down Syndrome Day (WDSD) and the NZDSA has launched a special #WeDecide video message from its own members to explain how important it is to make their own choices.

In the clip, Lily talks about becoming an actress, Rachel and Vincenzo talk about getting married, Abigail talks about her career in media while Alec and Jessica proudly explain how they bought a house.

Disability Rights Commissioner Paula Tesoriero highlights that 34.9 per cent of people with Down syndrome are not in education, training or employment and asks New Zealanders to consider how their actions can help change those statistics.

“A child deserves the right to decide what a good life looks like, just like all of us,” says the commissioner.

The #WeDecide video is one of thousands of initiatives and special events around New Zealand and around the world to raise awareness for Down syndrome and to promote the global “We Decide” message.

In New Zealand, local groups have organised gatherings in their own community, but unfortunately some had to be cancelled because of Covid-19.

Hundreds of schools around the country have also embraced the “Odd Socks” campaign in which students wear non-matching socks to demonstrate that we are all different and to fundraise for their local Down syndrome community.

“These events are growing every year and this shows there is an increasing involvement by local schools and communities,” says Vaccarino.

“And of course, World Down Syndrome Day is a special day for our families and whānau to get together, connect and celebrate the amazing feats our people with Down syndrome have achieved.”

 

You can download the video here

 

 

By Andrew Oswin

I attended the Unforgetaball 2019 at the Hornby Working Men’s Club.

It is for families and friends of people with intellectual disabilities. It is about networking with other families and friends, having fun, dancing, singing, and having fun.

Everyone all got dressed up all in their finery and had many photo opportunities.

We welcomed back a band called, ‘Girl From Mars’, who once again played and sang for us at the ball.

I had many dances with a number of lovely ladies and I got to dance to I Want To Break Free, Updown Funky Monkey, Tonight Is Going To Be A Good Night and one of my favourite songs Mamma Mia.

A light supper got provided and the caterers brought the food out to the tables so that everyone could help themselves.

I would like to take this opportunity to thank the organisers Linda Te Kaat and Tania Grose for organising the Unforgetaball once again, which is one of the highlights for the year, as well as the decorators and photographers, the Hornby Working Men’s Club Sports Hall Staff for hiring the venue, the band Girl From Mars and a very special thank to everyone who attended.

I really enjoyed it!

By Edward Borkin

I recently attended a meeting which will help form questions in a survey.

The survey will be about people’s attitudes towards people with disabilities in New Zealand. There were people with many different disabilities and we all shared our personal experiences.

I went to the meeting to speak on behalf of people with Down syndrome. The message I wanted to share was “include us”.

I talked about how I was included by my old high school to open a new school gymnasium. This is because I won a gold medal at the World Summer Games in Greece. There were other athletes who opened the gymnasium with me such as Olympic medallist Bruce Kendall.

Another hot topic was around the support which people with disabilities receive.

We all came to the conclusion that the more support people with disabilities receive, the more they will achieve and succeed in the community. This increases positive attitudes towards people with disabilities.

I talked about the support I received from my job coach. This support has allowed me to be an employee at Pak’n Save since 2001.

My final message is that people with disabilities are good people and have value in the community. We need to speak up to be heard, respected and reach our full potential.

 

To celebrate its 51st anniversary last July, Special Olympics International organised a host of events and activities focused on Unified Sports.

In Unified Sports, Special Olympians compete alongside and against people with and without intellectual disabilities.

Special Olympics New Zealand celebrated the Special Olympics Global Day of Inclusion with an exhibition football match in Christchurch on July 21,

The New Zealand World Summer Games Unified football team took on an invitational team made up of local athletes and Christchurch City councillors on the famous cricket pitch at Hagley Oval.

The match featured on TVNZ’s Seven Sharp programme and Frank Walmsley explained that as a unified partner in the team, he is part of the team, and not a coach.

“We’re there to play with the team, be part of the team. We make sure that everybody’s getting passed to, keeping their heads up when they go a goal behind. Just there to support the others,” said Walmsley.

Special Olympics NZ Chief Executive Carolyn Young said that unified sport creates great opportunities for people to connect. “And we really saw that at the Christchurch match.”

“The match provided an opportunity to showcase the benefits of making connections with a broader range of people in our community and demonstrates that we are better together.”

Both teams had great fun and put in an amazing performance. At the end of the day the World Summer Games team came out on top with a 1-0 win.

If you want to see the action on Seven Sharp, please follow this link.

https://www.tvnz.co.nz/one-news/sport/other/unified-football-team-mixed-special-needs-athletes-competing-alongside-those-without

By Joanne Holden

After four years as “camp mother” keeping the Roncalli College girls’ rugby team hydrated, a Timaru 16-year-old with Down syndrome has made her debut on the field.

Meghan Phillips burst into tears when her mother told her she would be donning yellow and blue stripes for the final five minutes of an hour-long match against visiting school Prebbleton on Friday.

“I’m a wee bit nervous,” Meghan said, ahead of the 3pm game.

While the Roncalli College Year 12 student was “rugby-mad”, she had only ever played the sport with her brother – so she enjoyed her first time practising and warming up with a team.

“I like playing rugby with all the girls.”

The Roncalli College and Prebbleton school girls 1st XV teams after their match. Photos: Bejon Haswell/Timaru Herald.

Although her team lost, Meghan scored the game’s final try – ploughing through half a field of opponents to ground the ball.

Meghan also got a shock when she learned her father and brother had travelled from Christchurch to watch her big moment, and sprinted over to them for a reunion after the game.

Roncalli girls coach Brad Sandri said Meghan had been getting water to the players and tees to the kickers since starting at the school four years ago, and was “a bit of a general camp mother”.

“She keeps everyone sorted. They’re never thirsty,” Sandri said.

Copyright: Stuff

Meghan Phillips, 16 has been a passionate supporter of the Roncalli College girls 1st XV for 3 years.

My parents and I went on the plane from Christchurch to Auckland to go to see Adam Lambert and Queen. We stayed in an apartment and I had a room all to myself with a TV in it as well. Before we went to the concert we went into the restaurant for dinner and I had a burger for my meal.

Rochelle at the Queen Concert

After that we walked to the Spark Arena to see the concert and it was amazing with all the special effects and I sang and danced all night. Adam Lambert was very good at the concert. He sang the Queen songs brilliant and Queen were really good as well. I had the best experience at the concert because it was fun and I really enjoyed it and I knew all the songs.

From
Rochelle Waters

Fifteen models with intellectual disabilities walked the catwalk at New Zealand Fashion Week recently as part of The Living Colour show, celebrating diversity.

They wore local designers from Zambesi to Kate Sylvester in New Zealand’s biggest showcase.

“I’m very excited,” one model told One News.

“I feel nervous I guess about catwalking but I am relaxing now,” another said.

After the show, there was a dance party for three hundred guests.

The show was organised by Dance For Abilities which is a not-for-profit organisation set up to give people with intellectual disabilities the opportunity to have a night out.

Founders Jonathan and Daniel Hopkirk were inspired by their sister Rosa, who was born with Down syndrome.

“We’d often go out, where there was often that barrier for her where that didn’t happen. So effectively this kind of creates that opportunity for people like Rosa to experience what we experience on a day to day basis,” Daniel said.

“Missy Boo, as her nickname is, or Rosa… we basically think she’s the Queen of sass so she runs the cutter at home. She keeps us honest,” Jonathan says.

Designers have welcomed the show to the fashion world.

Brittany Cosgrove from Nope Sisters Clothing says the show is usually known as not being very inclusive.

“It’s sort of known for being very exclusive and high-end… so it’s really good to see some actual changes being made.”

“It just knocks down a lot of barriers and a lot of walls to people’s perspectives on what they think disability might be,” Daniel added.

Copyright: TVNZ

By Dan Tucker

Hi my name is Dan. I am 25 years old.

On 18 January this year, I died for the first time. I gave my family a very big scare.

Dan Tucker

While I was still in hospital one of my sisters asked Mum if she would get the Lucky Few Tattoo. She also asked my other sister.

When they decided to go and get one done after I was out of hospital, I asked if I could have one too. So we all went together and got them done.

I was very brave and it didn’t hurt too much.

Getting the tattoo is my greatest thing ever because other people need to believe in themselves.

The three chevrons mean love heart and soul.

I have a loving mother and family who do care about me.

Here is a photo of our tattoos.

Dan Tucker has congenital heart condition and his heart stopped earlier this year.

 

 

By Kaye Young

The Vaughan Park Retreat Centre is a wonderful, peaceful place set above Long Bay Beach  in Auckland, nestled into rolling hills with views across bush and towards the beach. The accommodation and food was generous and excellent and it was wonderful to meet other parents who also have a very high needs son/daughter.

My son James is 23 years old has Down syndrome, Autism, Coeliac disease and is non-verbal so it is not often one meets another family whose child has the same diagnosis. For me it was lovely to be in a place where my son was not the most developmentally delayed. I was pampered and my son coped pretty well with all the changes starting with the plane flight, travel in a shuttle van, new peers, food and accommodation. Having head phones on so he could listen to his music helped a lot. When James was asked to do the rock climbing, abseiling and archery he would not participate despite the best efforts of Coen and Glen but I had not allowed James to wear his headphones. The next day he wore his headphones and did wonderful art work for 2 hours. I was amazed and now with the benefit of hindsight how many other things would he do if he could relax listening to his music while doing the activity! So both James and I learnt new things and I loved the company of other Mums/Dads who have children with similar challenges.

Thank you to Zandra and the NZDSA for organising such a great event and if it could be held again for parents with very high needs children with Down syndrome that would be fabulous!

By Coen Lammers

Eight young people from all corners of New Zealand last month enjoyed a weekend of adventure, camaraderie, arts, dancing and of course plenty of finger-licking food at the NZDSA Youth Development Camp. The young adults ranging from 18 to 32 years old were invited by the NZDSA to attend the annual at the Vaughan Park in Long Bay, north of Auckland.

NZDSA Youth Camp

The venue provided a stunning beach-side backdrop and was situated right next to the Marine Education and Recreation Centre (MREC) where the guests took part in a host of adrenaline-filled activities and where they were asked to get out of their comfort zones.

For many of the participants, the airplane ride into Auckland already provided a highlight in itself. Aside from Melissa Hoffman and Emily Leech, who only had to drive over the Harbour Bridge, the other guests flew in from far and wide. Katie Beamish from Dunedin and Invercargill’s Jacqie Glew represented the deep south, with James Young from Christchurch making up the South Island crew. Brendon Porthouse flew in from Otaki on the Kapati Coast, along with his old friend Harry Elsworth, while David Gunn represented Palmerston North.

Some of the regional neighbours knew others on the camp, but most of the participants met for the first time, and they soon bonded quickly to support each other on the different activities.

After an opening night of introductions and a fun activity experimenting with robot toys, the team really went to work on Saturday morning when the trainers at the Marine Education Centre were waiting to put the young visitors through their paces on the climbing wall. The youngsters initially explored the small climbing wall to find out about how to use their arms and legs, but many of them could not wait to get onto their climbing harnesses and onto the ropes. Girl power came to the fore at the camp as the young ladies from the South were leading the way, tackling the first climb like spiders. Inspired by Jacqui and Katie, the other more reluctant members of the team soon followed, and once they got their first taste, many of them could not wait to go up a second and third time.

The next challenge of the adventure was to abseil down the same 10-metre wall and again the women were leading the way. Some of them even stopped mid-decent to sort out their hair and pose for a photo. Standing on top of the climbing wall can be an intimidating place for anyone, even without a fear of heights, but the expert instructors at MERC managed to assist all of their young participants to slide safely down wall, even if some of them were using some unorthodox techniques.

The team and the adults assisting them during the weekend had worked up a sizeable hunger when the fantastic Rapid Relief Team arrived to prepare a delicious lunch of burgers and hot chips. The temptation was almost too big, and some of the participants initially struggled a bit with a full tummy on the archery course, which was the afternoon activity. The bows were large and the arrows were flying at rapid speed towards the target as big cheers erupted for the arrows that landed close to the bullseye.

While the young people were busy brushing up on their climbing and Robin Hood skills, the mothers were whisked away for a coffee and some shopping, and treated to a pampering session with a beauty therapist and masseuse, which some of the parents reluctantly, but gladly accepted.

Once everyone had recovered from the day’s activities, the Vaughan Park chefs put up a wonderful early Christmas dinner, which was a perfect opportunity to make new friends and share the stories of the day. As with previous camps, the participants were quickly able to get rid of their dinner calories during the traditional disco. The extended play list that represented all the Abba and Bee Gees classics, as well as the more contemporary Katy Perry and Taylor Swift repertoires, gave everyone an excuse to strut their stuff.

After all that excitement, it was not a surprise that the team were a bit more subdued on the final morning, but the arts session provided the perfect activity and produced some terrific artwork.

After the final lunch, the participants, parents and support crew said their final goodbyes, but vowed they to stay in touch to share their memories of all the adventures and new skills they experienced at Vaughan Park.

Young adults who are interested in attending the 2019 Youth Development Camp can contact Zandra Vaccarino on [email protected]