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

 

 

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

Our family headed off grid and went to the exotic island of Niue. What we found was a simple island with charm but also challenges.

Niue came with the expected sunshine, warm temperatures and locals with hearts of gold.

We enjoyed the music, culture, the glistening warm sea and striking beauty, along with the lack of wifi and limited shopping. What a treat for an autumn holiday getaway.

However, Niue is isolated. Just two flights travel to Niue each week and only one container ship berths in Niue each month, weather permitting. Everything from food to fuel comes in either by air or sea. When supplies run out, then you do without.

Niue is a coral atoll so you have to dress to protect yourself. Have you ever walked over sharp coral (in flippers), or snorkelled between gagged rocks and caves? Any coral cuts need to be treated seriously or infection sets in.

The coast is surrounded by steep cliffs so you have to be daring and dive or jump from great heights to reach the warm seas.

The sea is tidal so you can be sucked out to sea or thrown up on the sharp rocks.

The ocean is full of wonderful sea creatures including dolphins, turtles and whales but when you snorkel you also swim amongst sharks and sea snakes.

Luka took it all in his stride. He spent the majority of his holiday under water. He jumped off cliffs, clambered over sharp coral outcrops and swam through caves often surrounded by curious sea snakes. Despite his fear of these,  he snorkelled for hours and then took on the ultimate challenge – Scuba diving.

Luka, Kirah (Luka’s sister), and Eric did a morning of Scuba diving training. They learnt how to use the diving apparatus (tanks, mouthpiece), equalise their ears, practised diving sign language which was a breeze for Luka and then tested it all out in the pool. The instructors had a wonderful approach. Within their strict safety guidelines, they let Luka set his own limits.

By afternoon they put it all together and did a reef dive out at sea. Amazing.

I have to say I had to hold back my panic. So much could go wrong and that included drowning. However, both Luka and Kirah revelled in the beautiful underwater world. They dived deep and long and came up smiling.

This moment reminded me that many outdoor challenges can give children positive feelings of self-worth and pride that they can’t always find elsewhere.

Now I’ll let the photos do the talking.

Luka takes on the charms and challenges of Niue

Thanks,
Angelique van der Velden

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.

 

 

We are Mrs and Mr Vaccarino

By Vinnie Vaccarino

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.

The beautiful bride

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.

Our friends

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

The bride and groom

 

 

Joe Payton has good reason to celebrate his 40th birthday this year. Joe completed Run Away: Hawke’s Bay International Marathon over the weekend and succeeded in more ways than one.

Joe was running for his son, Otis, who turns 10 this year and has Down syndrome. Otis, like many kids with Down syndrome, faced an uphill battle learning to communicate.

A combination of low muscle tone, a larger tongue inside a smaller oral cavity, and intellectual developmental delay, make it much harder for kids with Down syndrome to learn to speak.

So, in 2011 when Otis was only an infant, the Payton whanau became members of the UpsideDowns Education Trust, a charity that provides speech language therapy for kids with Down syndrome.

“While I was out running one day, I thought, I turn 40 this year and Otis turns 10, so it would be good to do something to celebrate this ‘milestone’. I thought it would be a good idea to raise money for the UpsideDown Education trust as they have supported Otis with speech language therapy over the years,” said Joe.

He set himself the huge fundraising goal of $10,000, and to inspire donors to ‘go big’ themselves, aimed to complete the marathon in under 3 hours, something fewer than 4% of male runners achieve.

“It all seemed pretty simple, train hard and run as hard as I could and I was reasonably confident I could get under the 3-hour mark, but about 5 weeks into a 12-week training programme, my left calf muscle started tightening up and I would get minor tears which meant I couldn’t run,” said Joe.

Only a week out, Joe was fearing the worst but got the tip from his brother-in-law to roll a golf ball under his foot which released all the tension in his calves.
“I felt like I might be able to actually run it,” said Joe.

“I didn’t get under 3hrs, but I couldn’t have gone any faster. It’s been an awesome experience and I hope the money raised has a real impact on the kids that need speech language therapy and their families,” said Joe who raised over $13,000 for kids like Otis.

“That’s enough to provide speech therapy for a child with Down syndrome for their whole primary school education. It’s an extraordinary achievement for an individual fundraiser – by far the biggest I’ve seen in my time with UpsideDowns,” says Sarah Paterson-Hamlin, Operations Manager of UpsideDowns.

Joe and Otis

 

By Tim Dinsdale

Hi – my name is Tim and I live in Wellington, but for the last two years I have lived in London with Mum and Dad. We went on our OE which was great fun.

I loved living in London even though it is big and very busy with lots and lots of people. We lived right in the middle of London in Bloomsbury which is not far from the British Museum and the British Library which we visited on a number of occasions. I particularly liked the Roman and Egyptian sections of the Museum and the beautifully coloured medieval manuscripts at the Library.

I do Seido Karate and horse riding here in Wellington so when we were away in London I joined the Fulham Seido Karate Club which was hard work but great fun. To get to karate we had to travel on the tube at 6 p.m. when people were leaving work to go home and I always asked Dad if the tube would be like sardines, with everybody packed together as I didn’t really like it when it was like sardines. Mostly it was but very often people stood up to give me their seat which was kind of them.

On the way back from karate it was later in the evening with less people and I always got a seat then. I liked saying hello to people or smiling at the person opposite which you don’t really do in London. I met lots of nice people that way. One night I sat next to a man who was reading music and we got talking. He turned out to be an opera singer who was practicing for an opera to be performed in front of the Queen for her Jubilee Celebrations. My Dad told him that I didn’t know you don’t really talk to people on the tube and the man laughed and said there should be more people like me as it had made his day and made the journey home much more fun. I was also able to join Special Olympics Equestrian at St Albans which is just out of London and we travelled there for my group lessons on Friday nights which I also enjoyed as I love riding.

My sister Samantha lives in London and I loved spending time with her most weekends when she had her days off work. We went to some great concerts like Michael Jackson (not the real person but someone who sang like him) and Les Miserables both of which I loved. And with Mum and Dad we all went to the Tower of London where we saw the dungeons and the Beefeaters, visited The Monument where the Great Fire of London started in 1666 and saw Buckingham Palace where the Queen lives.

Mum, Dad and I did lots of travelling while we were away. We drove all around England, Scotland, Wales and Southern Ireland, visiting old castles and little villages. My relations came from England and Scotland a long time ago and we visited lots of villages and towns where they used to live. I particularly liked walking through the graveyards looking at the grave stones trying to find our ancestors and we did find the names of quite a few. I also love anything to do with King Arthur and the Knights of the Round Table so we drove to many places where he had been, including Tintagel on the coast of Cornwall where he was supposed to have been born, Glastonbury Abbey in Somerset where he and Queen Guinevere are buried and even to Winchester in Hampshire where the Round Table is up on the wall of Winchester Abbey – all the trips were really enjoyable and I have learnt a lot more about King Arthur.

We also had some great trips to Europe and beyond. We went to Austria (in the snow), Morocco (very hot, and I was really worried about all the very poor people in the streets so decided that I would like to be the King of Morocco and make sure everyone was fed and had somewhere to live). I enjoyed Spain (lovely old buildings and delicious food). One day when we were having lunch in an outdoor café in Granada, Southern Spain, a young man with Down Syndrome saw us and came over to say hello (“hola” in Spanish) and to give me a hug. I can’t speak Spanish and he couldn’t speak English but we had a conversation and lots of smiles then he said goodbye “adios”, waving as he went. I thought that was really nice of him to stop and say hello. We also visited Barbados (where my grandfather and great-grandfather lived many years ago) and Corfu (very warm and sunny with lovely moussaka which I ate many times at a little café just near where we were staying.

The family who owned it was really nice and gave me a big helping of Auntie’s moussaka each time we visited). Probably my favourite trips were to Dubrovnik in Croatia which is very beautiful, Normandy in France where I saw the Bayeux Tapestry which is 1,000 years old and to Arromanches which is the site of the D-Day Landings of the troops during World War 2. And before that, we went on a wonderful cruise on a ship through to St Petersburg in Russia visiting Stockholm in Sweden, Tallinn in Estonia and other cities. I love the places we visited but I also loved the cruise as there was a wonderful big library on board and when we weren’t out visiting places I sat in the Library and read books. Then at night after dinner there were quizzes and musicals and cooking demonstrations – all of which I thoroughly enjoyed.

Now we are back home I often talk about our time away. I met lots of lovely people and learnt a great deal of interesting things about the different countries we visited. Luckily Mum has made me photobooks which I look at often and remember all the fabulous things we did during our big OE.