By Abigail Knight

This year in April, I started my very first paid job at PHD Media, which is a large advertising company for TV, Radio and Internet and is located in Mount Eden.

I was asked to come in for an interview and I remember feeling quite confident meeting my employer as they were very friendly people. Mel from PolyEmp accompanied me to my interview and helped me with all the paper work. I was so excited to be starting work in my dream job. My position is an Office Assistant working for 4 hours, from 8:30am to 12:30pm, Monday to Friday, with lots of jobs to do.

Every morning, I sort out the morning mail, restock the snack cupboard and the tea, coffee and milk in the kitchen and tidy it up. As well as that I tidy the stationary room, IT cupboard and the meeting rooms. I also help out with Reception, refilling printer paper and putting away Countdown and stationary orders (my favourite job) and I water the plants every Friday. The PR team also call on me when some extra help is needed. One of my important jobs is making the appointments for the staff massages which we are very lucky to get at our work.

When I finish work on Tuesdays, Thursdays and Fridays, I walk to the Medi Strength Gym to do my exercises. It is really convenient for me because it is right next to my work.

Mum takes me to work in the mornings, on her way to work. After work I catch a train to New Market and then a bus to get home.

I love working at my job in PHD Media because I like the jobs that I do and it’s the type of work environment I like working in.

My colleagues I work with are very helpful and they always tell me I do an amazing job of keeping everything tidy and getting my tasks done. When I first started my job, I had a list of tasks that I had to work through. Now I don’t need the list of tasks, because I know what my jobs are and I get them done quickly, so I can add more jobs.

I feel like I have a new work family.

Thanks to routine testing, parents are often well aware of whether their child has a high chance of Down syndrome. New Zealand Herald reporter Emily Winstanley looked at how three families handled the news.

Auckland parents Kirsten McDonald and Philip Venables found out their unborn baby could have Down syndrome after the 12-week screening offered to all expectant mothers in New Zealand. They decided to find out for sure with an amniocentesis test.

McDonald says the doctor who delivered the news asked her to look at the piece of paper with her name and the result, confirming their child had Down syndrome. “Then [her] next words were, ‘You’re going to have a beautiful baby boy.’ That still stays with me, those words from her. She just reminded us that first and foremost, we were going to have a beautiful baby boy, rather than saying, ‘Oh I’m really sorry’ or even words like ‘but’.”

Thirteen weeks later, baby Joshua was born.

At 39, McDonald knew her age would increase her baby’s chance of chromosomal abnormalities like Down syndrome, but when she had the 12-week test, the chance showed at one in 80. They’d decided to delay the amniocentesis until she was 25 weeks, because for them, it wasn’t a question of whether to continue with the pregnancy, but of wanting to prepare themselves.

“Every time we had a scan we were told the risk had increased. We just needed to know so I could enjoy my pregnancy, rather than spend the next 15 weeks being stressed.”
The test was conclusive, so they met with families of children with Down syndrome, and did plenty of research.

“By the time I had Joshua we were just so ready to meet him and not have this abstract diagnosis of Down syndrome. We just wanted to meet our boy. There was no shock or worry or trauma. It does have an impact on him and I wouldn’t change him for the world. If we could take away the Down syndrome, no way, that’s what makes Joshua who he is.”

But like many parents of children with Down syndrome, McDonald is concerned about the way the diagnosis is presented to families.

“I don’t have anything to say against testing because it prepared me for the birth of my child. I guess what I have an issue with is what information people are given when they are encouraged to have a test and when they get the diagnosis. Most of it is about everything that could be ‘wrong’ with our children. Imagine if we did that with every diagnosis. I think everyone has a right to have a test and a right to make their own decision, but it’s about information.”

And that’s certainly the view of the Down Syndrome Association. National executive officer Zandra Vaccarino wants families facing a diagnosis to be put in touch with people with Down syndrome and their families. “There’s a lot of information given from a medical perspective, like what screening is, and the options around termination. But they do not get information from the social perspective. So if someone’s never met someone with Down syndrome, and read a book 20 years ago, that will be the knowledge they hold. Every year, quality of life for people with Down syndrome changes as they’re included more in the community, and that information isn’t always shared. People with Down syndrome are moving the goalposts all the time.”

Vaccarino also wants better training for the medical professionals. She says what she’s hearing from people in the community, is some families feel they’ve been pressured to terminate as a result of a Down syndrome diagnosis.

Peter Stone is Professor of Maternal and Fetal Medicine at the University of Auckland, and a representative on the National Screening Unit Advisory Group, which oversees antenatal testing. He disagrees with the idea that there is pressure or coercion of women to make a particular choice. “The screening is based around reproductive choice. The majority of women, whatever they decide, want to know what is going on in their pregnancy.”

Twelve-week testing, also called “first trimester combined screening”, takes into account an ultrasound scan, a blood test, and other factors like a mother’s weight and whether she smokes. It gives a specific chance of the baby having Down syndrome or one of a handful of rarer chromosomal abnormalities. If the test shows an increased chance of Down syndrome, one in 300 or less, parents are offered further diagnostic testing — the amniocentesis, or less often chorionic villus sampling.

It’s hard to work out exactly how many women choose to terminate once a diagnosis of Down syndrome is given. Stone says in New Zealand, about two-thirds of women who are given a high chance of Down syndrome and other chromosomal disorders will have diagnostic tests done. In 2015, that was 655 women.

Of those who have a diagnosis confirmed, he says about two-thirds again will choose not to continue with the pregnancy. The Abortion Supervisory Committee doesn’t keep information on the specific reason for an abortion, so it’s impossible to know the exact number. Stone says the termination rate in New Zealand is much lower than in other Western countries — for example, Denmark. “I think this suggests there’s no evidence of pressure or coercion to have a termination.”

Iceland and Denmark are often highlighted as extreme cases, where nearly 100 per cent of pregnancies involving a Down syndrome diagnosis are terminated. In England and Wales it’s roughly 90 per cent. In the United States, the rate is similar to New Zealand’s.

One parent who chose not to continue their pregnancy after the diagnosis is Jess (not her real name).

After trying to conceive for two years, then a miscarriage, she and her partner were thrilled to become pregnant again. Then came the news they faced a one-in-five chance of the baby having Down syndrome, which was confirmed with diagnostic testing.

Jess was in her 40s when they conceived, and, as a medical specialist, was well aware of the higher risk that posed. Before testing, she was sure in the case of Down syndrome, her decision would be to terminate. But in reality, she says making the decision was probably the worst thing she and her partner have ever been through.

“It took us weeks to decide, and I wondered if it might break us up at one point. We went to counselling with the social workers at the hospital, we had a couple of sessions with them really going through what are our hopes and fears and our real core beliefs. I think we came to a place of support for each other. In the end, I felt termination was the only way forward.”

She didn’t feel any pressure to terminate, “I almost felt pressure the other way, but I think that’s just personal circumstance.”

In the end, Jess opted to be induced at 17 weeks. “I felt like I wanted to meet my son, I wanted to be able to bury him and mourn him, so I went through the induction and that was pretty horrible.” She’s since had another child, who she calls her ‘rainbow baby’.

Two years on, Jess knows it was the right choice for her family. “It’s something that comes back to me often, but I’ve made peace with the fact it was the right decision.”

World Down Syndrome Day saw many people celebrating what those with the syndrome can contribute to their community. For others, it was a chance to advocate against antenatal testing, with some saying the syndrome is being tested out of existence. But doctors point out that can’t happen altogether, because many mothers choose not to screen at all. In New Zealand, 20 per cent of pregnancies aren’t screened, by circumstance or by choice. And then, even when the chance is calculated to be extremely low, it’s still a chance nonetheless.

Charlotte Ammundsen was 24 when she became pregnant, and her combined testing showed a chance of just one in 12,000. Then, when her now 1-year-old daughter Hayley was born, she immediately thought something wasn’t quite right.

“In all honesty I didn’t immediately think Down syndrome, but I felt like something was a bit off. The midwife was looking at me and she said I see you’ve picked up on something. We think there are certainly signs of Down syndrome.” That diagnosis was quickly confirmed.

Ammundsen’s in two minds about whether it would have been easier to have known ahead of time. “It would have been so wonderful to properly enjoy the first week, because she was in NICU for three days, and everything combined was overwhelming. Also, the community is amazing, so to be part of that earlier would have been awesome. On the other hand, I’m glad I didn’t have that conversation with doctors about all the bad stuff. It’s not that scary, she’s the best thing that’s happened to me.”

Copyright Canvas/New Zealand Herald

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

 

 

NEW BEGINNINGS

My son Logan is a 21 year old man with Down Syndrome, Autism, Dyspraxia and mild intellectual disability.

Recently on our Facebook page I posted a video of Logan in action at the Living Options café in Alexandra, Central Otago.

I would like to share our incredible journey over the last three years with you all, the highs and lows in the hope it will give others the insight, that great things can and will happen for our children and families.

February 2016 saw a rare weekend away for me without Logan and while on a ride along the Central Otago Rail Trail, I came alongside a young 18 year old woman with Down Syndrome and her support worker out for a Saturday afternoon ride. I still distinctly recall the soft toy elephant in the basket on the back of her bike, As Logan was around the same age, like all of us parents, I was keen to spend a few minutes riding and talking with them to see how other families, individuals and their parents handle life’s challenges in what for most of us is a murky, unchartered journey.

We spoke only for 5-6 minutes, but that 5-6 minutes was to majorly change our lives!

I was explaining life with Logan and my worries and fears for the future with the support worker who asked me “have you heard of Living Options here in Alexandra?”

Living Options is an organisation which came about by the vision of one woman who saw a need for families of special needs people and owing to her compassionate nature, formed the foundations of this organisation from her garage.

Living Options

Living Options in Alexandra

Living Options Charitable Trust was set up in Alexandra in 2011 to provide support services in Central Otago for people with intellectual, physical and sensory disabilities enabling them to live independently in their own community. Prior to that such people often had to leave their family and community in order to receive the services they required. In recent years Living Options has extended its services into the Queenstown/Wakatipu area. Individuals are encouraged to take control over their own lives and to have input into any major decisions affecting them. Support is flexible, focusing on the person with the family and whanau involvement.

Living Options has an activity centre in Alexandra providing recreational and educational opportunities and training in life and social skills.

Upon returning from my weekend away I embarked on researching and discovering what I could about this place. Once I established contact we travelled up for a couple of visits with Logan, who clearly was totally at ease and loved being there. Finally he was in a place where he wasn’t judged, could comfortably be himself and was accepted by all for the person he is.

Logan painting

Logan Painting

Logan working on his painting ‘New Beginnings’

 

I was desperate for Logan to have an amazing life in a warm, safe, loving environment and Living Options clearly met my vision for Logan. This is a service provider which clearly puts the emphasis, not only on the individual but also firmly on the family and the care management and staff provide is exceptional.

As we were Invercargill based, and clearly there was nothing of this calibre there and a future that was uncertain, January 2017 saw us purchase a home in Roxburgh (30 minutes south of Alexandra) which we rented while familiarisation with the area and upcoming changes were implemented for Logan.

Twelve months later I took the biggest gamble of my life, sold up everything and moved up fulltime so Logan could attend the centre during the day and work towards a permanent residential contract ultimately seeing him living as independently as possible while having full support when needed. This was a journey that was going to test us all and would either be a success or a failure, and I was extremely hesitant to leave what I already knew, however to keep everyone happy, and to give Logan the best opportunity possible, I made this move.

This was a tough period with days starting at 5.30am, commuting 42.4km into Alexandra (at times in foggy, icy, white out conditions during winter), dropping Logan off, facing a full day at work before collecting him at the end of the day and returning home. Then began the usual regime with Logan sorting him for the evening before settling for the night so I could finally sit down, usually 10pm for a breather and bed before the following day saw the same routines present themselves.

I was also struggling with issues from my own childhood in this area and working in the town and seeing landmarks everyday was impacting more on me than I thought they would. It was difficult to come in daily to a place that harboured many unpleasant memories for me.

This daily grind took a major toll on me with constant tears and breakdowns, but each time management at the centre would promptly sit me down, make phone calls, and juggle rosters just so Logan could have 3-4 nights in a house so I could have a breather. These periods were instrumental in me keeping my sanity.

The many years of living a life with a disability and daily issues ultimately took its toll on my relationship and in November 2018 my partner of 17 years and I parted ways.

This had been coming for quite some time and the only silver lining was Logan’s direction in life and the vision I had for him over the last decade particularly was coming into fruition.

Logan is now thriving in his new environment and as of March this year is now under a fulltime residential contract. He lives in a flat with two other flatmates/friends and is involved in all aspects of running a household, including chores and meal preparations with full support when needed. The interaction with his peers is amazing and his progress in a very short time astounds me.

Baking

Food prep

Food prep in the kitchen

With the help of CCS in Alexandra, and in conjunction with Living Options Logan has a supported job working with and exercising puppies in a local boarding kennels and soon will also be working watering plants in the garden section of a local retailer giving him the same things we all need in our lives, a sense of self – worth, belonging and a team member whose contributions are valued.

Thursday afternoons from 1.30 – 3.30pm Living Options run a community café open to the public with everyone involved in various roles, whether it be taking orders, plating up, being a waiter or waitress, clearing tables. It’s not uncommon for up to 70 people to come and support this incredible venture. All the food is cooked, made or baked the day prior, once again with all members of the centre being involved.

Cafe waiter

Logan enjoying being a Waiter at the Café.

Thanks to this amazing place, management and staff second to none, I now have the support I need to finally, after 21 years, get some of my life back which I will admit is exciting, but is also taking a bit of getting used to!

Sitting here writing this and reflecting I guess the point I wish to share with you all is this……

I’ve had two relationship breakups, faced alcohol issues, depression and mental health issues, I’ve had to confront the past and had an unstable work history in the quest for finding a good work/life balance. I’ve battled agencies, been knocked back numerous times, shed tears and tantrums as well as experiencing laughs, smiles, milestones and magical moments on this 21year journey. Whatever your vision, goals or desires you have for your children and their future – keep striving, keep going. You’ll have mountains to climb and dark days to face – but keep going and never give up because the destination is so worth the at times arduous journey – this I can promise you!

So if you happen to be passing through Alexandra on a Thursday between 1.30 and 3.30pm, call in, say hi and check out Café 29 at Living Options centre – You’ll be warmed by the smiles on the faces and the best damn coffee and cake in town, I’ll stake my reputation in it!

 

Logan and his Dad

Finally enjoying the rewards for the journey travelled.

 

Living with Down Syndrome

By Coen Lammers

Having a daughter with Down syndrome is possibly the best thing that has happened to our family – as well as the most challenging.

Watching Bella flourish for the past 16 years, we know that living with Down syndrome is not a curse or punishment, but a terrific, enriching adventure filled with joy and surprises, as well as the odd road bumps.

Last week’s storylines on Shortland Street created a storm in parts of the Down Syndrome community because they depict old-fashioned, ignorant ideas around the disability and have nothing to do with our day-to-day experiences in a modern, inclusive New Zealand society.
Bella’s birth was a shock and surprise to the family because we had decided not to have any pre-natal screening test.

My wife and her family took a while to come to terms with this new reality, but I had grown up with an uncle with Down syndrome and thought I knew what to expect.

What I did not realise back in 2001 was the incredible impact our wonderful, multi-talented, sociable and loving daughter would have on our entire wider community.

Her outgoing, chatty and cheeky personality has turned her into a mini-celebrity in our small town and most people only know us as Bella’s mum, dad or brothers.

We are fortunate that Bella was born in a marvelous, inclusive New Zealand society that encourages and practices mainstreaming in education and positive community participation by disabled people.

Like many other countries though, we are currently grappling with the ethical debate around improved pre-natal screening, which now gives pregnant women near conclusive evidence to determine if their baby will have Down syndrome.

The New Zealand Down Syndrome Association does not challenge any woman’s right to choose whether she wants to abort her pregnancy, but there is a desperate need for more balanced information for expecting parents to make a well-informed decision.

Currently, the advice to pregnant mothers is purely medical and based on potential medical complications that MIGHT happen. On top of the initial shock of a positive screening, young parents are exposed to blatant fear tactics, so it is not surprising that many of them opt to terminate.

Unfortunately, our Government does not keep any statistics on how many women have a positive test for Down syndrome and what percentage decides to abort, but in several countries a deliberate campaign by governments and medical officials to eliminate Down syndrome from their society has produced sobering results.

Iceland has nearly reached a 100% termination rate, while in 2017 only four births with Down syndrome were recorded in Denmark.

Before the New Zealand medical community quietly eliminates one section of our society, it is vital for our country to have a national debate on the value we put on people with Down syndrome, or any other disability that can be screened.

The crystal-ball gazing by doctors, who may never have met anyone with Down syndrome, is frustrating to say the least.

Doctors don’t tell other expecting parents that their child might be obese, may have problems with drugs or alcohol, may have behavioural or learning issues, will cost them hundreds of thousands of dollars and pretty much ruin their carefree life, so why are they so insistent on presenting a list of doom for children with Down syndrome.

Yes, children with Down syndrome have a higher chance of heart complications, but these are mostly fixed in the first months of lives.

Our Bella has coeliac disease like many other Kiwi kids, and has been in hospital with pneumonia, but the list of doom never materialised.

In fact, we probably have visited the doctor more often with her two brothers and Bella is physically the staunchest and most resilient one of our three children.

When we dragged our family around Europe, the boys would walk and moan around Rome, Paris or Barcelona, while Bella would just get on with it, inspired by the next gelato shop around the corner.

I really wish some of the “experts” providing advice to vulnerable pregnant women would spent a few hours with our Bella.

If they would see how she interacts with fellow students at her high school, disabled or not, will show them how wonderfully integrated she is in that community.

They would also see the multitude of life skills Bella is unknowingly teaching her peers, around kindness, patience, accepting and appreciating diversity, and helping others.
Bella would also be proud to take them to her part-time job at Coffee Culture where she serves coffees to her local community two afternoons each week and is a much loved and valued workmate.

She would show them her swimming medals from the latest National Special Olympics, or the video from her Tinkerbell dance solo in the latest stage performance of Jolt, a high-profile dance company for mixed ability dancers.

Or she would take them along to the barista course she is currently completing under guidance of one of New Zealand’s leading baristas.

Between her school, dancing, sports and work you would struggle to find any Kiwi 16-year-old girls juggling such an exciting life.

Our oldest child is a wonderful role model for her younger brothers on how to embrace life and make the most out of it.

We are proud of what Bella has achieved, but we’d be the first to admit that the journey has not always been easy, with numerous battles with officials, teachers, principals and agencies to give her the best opportunities.

But saying that, most parents face similar battles for their children, whether they are disabled or not.

And that is the point that many medical experts miss.

People with Down syndrome are people like all of us with an endless variety of personalities and passions, with different strengths and weaknesses.

Next time you meet a person with Down syndrome, maybe try to get to know the person and look beyond the disability.

You might be surprised to find out how interesting his or her life is, filled with dreams. Just like the rest of us.

 

Coen Lammers is a communications advisor, writer and editor of CHAT 21, the New Zealand Down Syndrome Association magazine.

Duncan Small – A Man of the Land

Charlotte Gendall looks back at the life of Duncan Small a remarkable man with Down syndrome who left a big legacy in his rural community.

Duncan as a baby with Mum Paula

Shepherd, shearer, dog trialist, horseman, bartender and all round man of the land: Duncan Small was a big character around the small town communities of Taihape and Hunterville in the northern Rangitikei .

At a recent equestrian competition in Taihape, visitors might have been intrigued by the Duncan Small Memorial Jump. The blue and white obstacle featured in the premier ring at the showjumping championships and was also the centre piece of a special class named after the said Duncan.

With riders from all over the North Island taking part, I had to ask “Who was Duncan Small?” The answer was instantaneous. “You didn’t know Duncan? Everyone knew Duncan!”

From talking to his friends at the show, it became clear that their affection for this man was motivated by multiple factors: admiration for his determination, his talent (was he the only Down syndrome shearer in the country?), and his enthusiasm for life, coupled with the way the unconditional support of a loving family had helped him thrive.

Duncan and his siblings

Duncan Small was born in the Taihape Maternity Home in June 1970, the first child to Paula and Jimmy. A formal diagnosis of Down syndrome six weeks later made little difference to getting on with life – it was home to the farm.

Duncan was out on the horses with his father while still in nappies – “my mate,” says Jimmy – and the youngster was frequently rocked to sleep while sitting in front of the saddle by the paces of Dad’s shepherd’s hack they travelled around the hill country of Pohonui Station.

Tug o' war

Talking, laughing and gathering friends as he grew, Duncan initially went to school in Taihape and then when the family moved to Hunterville, he attended the local school and later Whanganui IHC and then on to flatting in a supported environment.

But truly, Duncan’s heart lay in the country. As a talented teen, in 1987 he and Paula travelled to the USA as part of the New Zealand Special Olympics squad, and three years of training paid off with multiple medals.

However it seems taking the boy out of the country couldn’t take the country out of the boy. The 17 year old rang Jimmy from the States. “Dad, I got two golds and two bronze. I finished Olympics, I’m coming home to go docking.”

Duncan on the farm

Retiring from international sport, Duncan threw his heart into rural life. He was given a former pack horse called Scooby, and now had the freedom to get around the steep country independently.

A series of dogs followed: Bacon, Scruff and Sam. Sam was his favourite partner, and Duncan was hugely proud of their victory in the Maiden Huntaway at Poukiore Dog Trials.

At about this time, the Man from Snowy River came out as a movie which Duncan loved dearly. Styling himself as Banjo Patterson’s hero, he was the self-styled “Man from Pohonui.”

Clearly, Duncan Small knew his own mind. For one birthday, Paula and Jimmy asked Duncan what he wanted. The answer was a bar. A bar? “A bar. Like a pub.” A bar was installed at Pohonui with all the fancy bits: nip pourer, mirrors and so forth.

Duncan loved to entertain and his gregarious manner made him a natural at hospitality, always topping everyone’s glass up before it was empty so no one could go home early.

With Jimmy and Anna on the beach
In 1999, Jimmy and Duncan moved to Otiwhiti Station where they spent very happy five years and then in 2004, Jimmy placed the sum for a house deposit in Duncan’s account. Duncan wrote the cheque and purchased “Dunc’s Place” in the Pukeori Valley where Jimmy still lives.

Rural life was Duncan’s life: he loved travelling to shows and hunting events with Jimmy in the horse truck. He competed in the shepherd’s classes at sports meetings, watching his dad showjump while helping out with the competitions.

Duncan riding
When the partnership with Scooby ended, it became difficult to find another horse so perfectly suited to Duncan.

Recognising his love of their sport, the Rangitikei Hunt appointed him as their non-riding honorary kennels man, a role Duncan took extremely seriously. Wearing his committee badge, he was constantly on hand to release and truck up the hounds on farms all over the district.

Shearing sheep is one of the most gruelling occupations around but always strong and fit from gymnastics, Duncan made the task look easy and wasn’t just for show – he notched up a best crutching tally of 200 in a day.

Duncan shearing

As a fastidious homemaker with skills learnt from his mum Paula, a big brother to Ginny, Rachel and the late Rebecca, it’s clear Duncan Small lived a full and happy life.

When the onset of dementia revealed itself, he continued to be lovingly cared for at home by Jimmy and the family until called up to a final muster last year at the age of 47.

Which brings us on to a hot summer’s day at the Taihape championships six months later, on the sportsground Duncan knew, the arena surrounded by burnt pasture, steep hills and sheep.

In years to come, the Duncan Small Memorial Jump will continue to be contested here and at other venues around the district. Perhaps other people will ask “what’s that all about?” It would be their privilege to learn about a man who combined the very best qualities of character, friendship and loyalty.

I wish I’d met him.

— Charlotte Gendall

Duncan Small

AUTHOR’S NOTE: Charlotte Gendall wrote this article after speaking to people who knew Duncan Small, after talking to his dad Jimmy, and with the benefit of reading a tribute from his sisters Ginny and Rachel, some of which she has adapted here.

Duncan and his sisters

 

Keratoconus screening programme saves our son’s eyesight

By Karen Nyenkamp

My husband and I own a company that supplies optical equipment to optometrists and hospital. We have always supported the Special Olympics Healthy Eyes programme by donating the equipment they use during the National games.

At the last Special Olympics National games held in Wellington in November 2017, the University of Auckland did a special screening for people with Down Syndrome to test for Keratoconus. We supplied the machine they used for this screening process.

As you may have read in earlier editions of CHAT 21, the University of Auckland are doing a research paper to see if people with DS are more susceptible to getting it.

Our son Max was screened for it then and he did not show any signs of it. However, they did determine that there was a remarkably higher instance of people with DS having it than the general population. They are continuing their research now to see just how prevalent it is in the DS community.

They set up another screening a year later in November 2018 at the Pullman Park Special Olympics Basketball ribbon day. Max was screened again at this event and unfortunately this time he did show signs of Keratoconus.

We immediately contacted Dr Rasha Altaie at the Milford Eye Clinic to discuss Max’s results and she scheduled Max to have a procedure called Crosslinking.

It is basically soaking his corneas in Riboflavin for 30 minutes and then hitting them with a UV light for 20 minutes. This changes the cells in the cornea so that they settle down and don’t become cone shaped.

As you can imagine this would be very difficult for Max to do without going under general anaesthesia.

We visited the Manuaku Super Clinic in January to have Max’s procedure done by Dr Altaie and so far it looks like it is working. He goes back every three months for checkups to make sure.

If it wasn’t for the screening process done, we might not have caught it at such an early stage as most optometrist do not have to equipment necessary to checking for Keratoconus and Max would have had a more invasive procedure done. If left too late a total cornea replacement would be necessary or blindness occurs.

Max after surgery

 

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

 

Duncan Armstrong claims Best Performance Award at Auckland Fringe Festival

Duncan Armstrong is back home after taking Auckland Fringe Festival by storm.

Duncan performing

The success was a while in the making but Duncan managed to take his performing arts career to the next level by a collaboration with Nic and Rose from Everybody Cool Lives Here.

Last September, director Isobel MacKinnon and Duncan started devising what became ‘Force Field’.

Using Duncan’s personal experience and ideas borrowed from Shakespeare’s The Tempest, the pair took two weeks to create a story line for a 25 minute show and a character named Chris.

“Chris imagines someone there and then they find romance,” says Duncan. “To Chris, Fiona is a real character…she’s out there somewhere”.

In November the team expanded by recruiting a few designers and by mid-January the team was working full-time on the show.

“It’s fun and a lot of work, sometimes I get tired  from  it,” tells Duncan.

“Sometimes we have to take a break and then come back to it. Then you are refreshed and recharged.”

Duncan in character

Before heading up to Auckland, the team tested the work with a few invited guests, including Duncan’s mum, Max. Character parallels with real life included wanting to move out of home, a story line that may not best delivered to an unexpected mum on the opening night.

The Basement Theatre season ran for five nights and the team managed to stay with friends, giving Duncan a taste of living with flatmates.

After a week of catching up with sleep, the Auckland Fringe Awards were announced and Force Field took home four awards, including Best Director, Best Production Design, and Best Performance (Theatre) for Duncan.

Everybody Cool Lives Here followed the awards up by attending the annual Performing Arts Market where Duncan pitched his solo alongside Jacob Dombroski.

Fingers crossed it means a step forward to touring the works to regional theatres and festivals. A Wellington return season is definitely on the cards for Force Field, and Duncan is currently looking at what it might take to get the work to Edinburgh Fringe.

Duncan and his fellow actors

 

One evening in in March, I received an email from a dear friend, Ruby Wills, who is the Southern Coordinator of Upp Club Dunedin. She had sent me an invitation from The Med Students Association to speak at their Otago University Medical Students Conference.

My role was to speak on behalf of people with Down syndrome so it was a challenge to make a PowerPoint presentation and a speech to go with it, because I had to speak for at least 15 minutes.

First of all, I had to write a speech talking about my achievements and my experience with doctors, so it meant to choose the right photographs and to start building ap a Power Point presentation.

It took me a month to get organised. I was watching some videos on YouTube on how to talk clear and loud and make myself understood, practicing my speech in front of a mirror so I can be more comfortable so I can be ready to speak in front of the audience, putting my slides in order so the photos fitted with my speech.

And many more details, so when the big day comes I will be well prepared.

Speaking at the conference

The big day comes and I was on my way to meet Ruby at the Otago Museum, because the night before we decided to meet there.
All of the Med students were already there and I got myself introduced from that day until today. I have made dear friends who I will cherish forever.

On Saturday May 25, my friend Ruby started to speak first because she wanted to tell the Med students how she got involved in the role of becoming the Co-coordinator of Upp Club and the wonderful opportunities that this club has to offer. Then she introduced me so I could have my turn to speak.

I spoke with such enthusiasm that I made them to applaud me at the end.

The gala dinner

That night Ruby and I got invited to go to their Gala dinner at the Savoy and we had such a FANTASTIC evening. We had a delicious buffet and we danced until we dropped. There was a professional photographer who took many photographs of us. In other words, I had a wonderful experience.

An evening of fun

The topic of my speech was about a doctor’s influence in people with Down syndrome lives.
I said that one in every eight hundred people is born with Down syndrome; and doctors have to remember some key points if they one day see a baby with Down syndrome and they could have heart conditions, thyroid dysfunctions, vision, hearing, respiratory infections and intestinal problems.

Doctors also have to understand that people with Down syndrome are not sick, that it is not a disease and we do not suffer from it.

Fun on the dance floor

Parents who are receiving the Chat 21 journal and have a baby with Down syndrome please remember to take care of your baby’s health so they can develop better.
Also believe in our ability because we do extraordinary things, we can be part of society, we can be part of groups like STRIVE or Upp Club.
We can learn and we have different skills, we have big dreams and want to make them come true.

We can achieve many things in life if we have the opportunities and you, doctors and parents, can help us to make that big difference.
Think about the great effect you have on the lives of people with Down syndrome

Remember,
Like Michael Jackson’s song says:

Heal the world, make it a better place, for you me and the entire human race.  

Carlos dancing