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.

 

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

 

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

 

The Down syndrome community in New Zealand includes huge numbers of Shortland Street fans and they were excited to see Jacob Dombroski become the first actor with Down syndrome to feature in one of the country’s iconic shows.

Jacob in reception at Shortland Street hospital

The Wellingtonian actor already has an impressive track record and performed his successful one-man dance, music and theatre show Big J Stylez at the Wellington Fringe Festival and Auckland’s Herald Theatre.

That is where he was spotted by Shortland Street producer Maxine Fleming who casted him for a three show guest appearance.

The 26-year-old played the character Winston who is the younger brother of Lincoln and Prince Kimiora.

Jacob acting a scene on Shortland Street

The talented actor and dancer told the Herald on Sunday that his character was “nice, chatty and always open hearted”.

He told the paper that he was lifetime fan of Shortland Street and that landing the role was a dream come true.

“I’m so happy about this opportunity and being able to challenge myself,” he told the Herald on Sunday.

The Big J Stylez show was a breakthrough moment for Jacob and shows his the struggles he faced growing up.

The show was created with Wellington theatre company Everybody Cool Lives Here, where Jacob gets the full support of the artistic brainstrust of Rose Kirkup and Nic Lane.

Shortland Street producer Fleming said that they were always looking for new voices and she had heard about Jacob’s outstanding performance in Big J Stylez.

“So we flew him up to discuss creating a guest role for him on the show as Lincoln and Prince Kimiora’s brother,” she told the Herald.

Jacob and a fellow Shortland Street actor

 

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

 

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.

Seven years after first seeing each other on the bus and being too shy to speak, James Dobinson and Jill Jefferies walked down the aisle as the first couple to be married at Christchurch’s Transitional ‘cardboard cathedral’ in November last year.

“We didn’t communicate at all at first,” says Dobinson from their home in Lyttelton: “We just sort of looked at each other.”

The couple’s relationship blossomed when they ended up flatting together with another friend, and it’s just been a matter of time since then before they got married.

Jill’s mother Margaret Jefferies says the pair always wanted to get married, and once their financial support situation was sorted out—it was all go.

“You always wanted to get married though didn’t you, it was sort of me that stopped you at first,” she says to Jill.
James and Jill took to the streets to crowd fund the wedding, playing piano at the Lyttelton Farmer’s Market on Saturdays while Jill danced—it’s a habit James has continued for ‘some pocket money’ and the fun of it.

The Lyttelton Time Bank—a community initiative where locals give up their time and expertise across a range of topics and industries in return for the services of other members—played a huge part in the planning and execution of the wedding. Everything from the cake, ring cushion to Jill’s hair and make-up, the 50s Bentley and driver was organised through the community.

“We’re all members of the Time Bank, so we ask each other for help… We shared skills and it’s measured in time, so you pay in time credits.”

Margaret says there was none of the drama usually associated with the stress of organising a wedding.
“The wedding was really easy because they both want a really nice wedding, but they weren’t Bridezillas. It was busy but it actually flowed pretty well the whole time,” she says.