We were incredibly proud to bring our 9th National Summer Games to our capital city for the very first time.  

National Summer Games

This event saw 1771 registered athletes and coaches from 43 clubs and 3 schools, 750 family and supporters and 500volunteers come together over 6 days to take part in New Zealand’s largest event for people with special capabilities. This event was 32 per cent larger than the 8th National Summer Games held in Dunedin four years ago. 

National Summer Games

We placed particular emphasis on making sure that there were no quotas in any of the 11 sports offered across our 10 venues. This meant that every athlete who qualified to attend the National Summer Games in their chosen sport was able to do so. This epitomises what Special Olympics is all about. Our youngest athlete, competing in swimming, was aged 9 and our oldest two athletes, competing in Ten Pin Bowling and lndoor Bowls, were 72! 

National Summer Games

It is part of our ethos to ensure that our athletes can compete in the best possible sports environments. The size and scale of this National Summer Games meant that we needed to use a range of high quality venues in Wellington, the Hutt Valley and Porirua. Additionally, our Equestrian competition was held at Manfeild Park in Feilding. 

National Summer Games

We are incredibly gratefuI to our amazing team of 50+volunteer clinicians who enabled the successfuI running of our healthy athletes programme for people with intellectual disabilities, which ran alongside our sports events. Free health screenings in Opening Eyes, Healthy Hearing, Fit Feet and SpeciaI Smiles, were offered to over 2,600 athletes and many were given Free prescription glasses and new hearing aids, all generously sponsored through the wonderfuI efforts of our dedicated clinicaI team.

National Summer Games

Additionally, we were able to pilot a referral system for those athletes who presented with acute health requirements so that they were able to receive the specialist care they neededto improve their health and well-being. SpeciaI Olympics offers much more than just sport! 

National Summer Games

I cannot thank our corporate and community volunteers enough for the outstanding effort they gave to support our event. Of speciaI mention were the 80+ volunteers and family supporters from Datacom’s Wellington offices who very ably led all the information technology functions for our sports events using our Games Management System. This included the development of the competition schedules and the timely recording and circulation of all sports results. Coupled with this, Datacom generously offered new ideas and innovation for continuous improvement in the Future. 

National Summer Games

National Summer Games

FMC lnsurance provided 63 staff volunteers to support the successfuI running of our Equestrian events in Feilding. Many of the FMC team had agricultural backgrounds and so they could slot into our environment with very little training. Like Datacom, the professionalism the FMC volunteers brought to our event was outstanding. Nga Tawa School not only wittingly provided horses from their Equestrian Academy for our competitions at Manfeild Park but also valuable votunteer support.  

National Summer Games

National Summer Games

Staff from Sport New Zealand, the Todd Corporation, Kiwibank and many Lions and Rotary volunteers also provided tremendous community support across all our sports. We wish to extend a huge thank you to all our volunteers who gave so willingly of their time tocensure the smooth running of our event. 

National Summer Games

We set 5 key goals at the start of this event and I am very pleased that we achieved them all. Namely: 

  • To deliver an outstanding event in full, on time and on budget; 
  • To celebrate the outstanding achievements and sporting successes of our participating athtetes; 
  • To further progress our desire to build positive awareness and understanding across New Zealand of the meaning and purpose of Special Olympics. 
  • Through our event change public attitudes and build new community support for people with intellectual disabilities 
  • To leave a very positive Special Olympics legacy within the greater Wellington region and in Feilding for many years to come.

National Summer Games

This was my 3rd National Summer Games and each time I encourage our team to aim for the stars. There is no better environment in my view that demonstrates what true sportsmanship is about. Showcasing and celebrating sporting success is a core aim but what will be more important will be the Fun, Friendship and camaraderie developed through sport, not only during Games Week but over a lifetime. 

National Summer Games

I wish to extend very special thanks to our extremely dedicated coaches, sports officials and volunteers who worked tirelessly with our athletes at community level to prepare them all so well for this event. Each person in the collective team played an important part behind the scenes in our Clubs and schools, from fundraising through to preparation of uniforms, travel and pastoral care. To the Families and care givers, a special thank you for your support. Our very grateful thanks to our incredible sponsors, suppliers and supporters who have provided in kind and investment support. We cannot run events of this size and scale without your ongoing commitment.  

National Summer Games

National Summer Games

And finally to my staff and our contracted team who went beyond the call of duty to deliver our best National Summer Games on record. I am buoyed by the exceptional warmth and hospitality that the host communities have shown to us every step of the way.  When we chose Wellington for our 9th National Summer Games, I knew this region would do us proud and there is absolutely no doubt that it delivered in spades to make this such a memorable experience for everyone involved. Thank you! 

Kathy Gibson 

CEO – SPECIAL OLYMPICS NEW ZEALAND 

 

 

 

 

 

National Summer Games

Down Right  

Roseanne develops own photography business 

By Dave Nicholl 

 

An Invercargill woman  has turned her passion for photography into a business. 

Roseanne  Zyskowski, who has Down syndrome,  has put 101 photos of her  favourite  places throughout  Invercargill  into a calendar. 

Zyskowski, who has been a photographer for a year now,  has taken pictures of  the Reading Cinemas, Queens Park, Thompsons bush  as well as her own backyard. 

The most difficult part of the project was  getting  motivated on some days but with the help of family,  friends  and support  workers  she got it finished,  Zyskowski said. 

Her mother Clare  developed the idea after  attending  a  social enterprise  workshop held in  Invercargill  in November. 

The initiative was  run by the  Ākina  Foundation with the support of  the Community Trust of Southland, Venture Southland  and the  Southland Regional Development  Strategy group. 

The idea was to give Roseanne a way in which she could use her passion for photography to support herself. 

“When people hear the  word  ’syndrome’ the  story  they have in their head might be quite different to the way a lot of young people with Down syndrome are growing up and developing.” 

The vision  she developed at the workshop was to change the story around people  living  with down  syndrome and  give  them the  opportunity to stand on their own feet. 

Included on the back of the calendar was a quote “No disability, only people,” that was designed to encourage others that those living with disabilities  are just  normal people in the community. 

The hope was that by showing Roseanne how she could develop her passion for photography, she could turn it  in to  a microbusiness. 

“She can actually take her  photography and do something with it.” 

If the business did not succeed it would still be a valuable learning opportunity for  Roseanne, Clare said. 

Each  photo had a story or a person behind it,  Roseanne said. 

She is selling the calendars for $22 

 

Rosanne Zyskowski with her calendar

Kavinda Herath/Stuff 

Copyright: Southland Times 

Interview with Peter Rees for Down Write Brilliant

Chat 21’s roving reporter Andrew Oswin interviewed Peter Rees, a young man with Down syndrome from Christchurch, about his job.

 

What is it you like doing at your job at Pomeroy’s?

Serving out the food and the drinks to the customers.

 

When did you start working at Pomeroy’s?

Ever since before the earthquakes.

 

Where is Pomeroy’s?

Pomeroy’s is located on the corner of Kilmore Street and Fitzgerald Avenue.

 

Why is it important for people with Down syndrome to get paid work?

It is very important because it is a major part of someone’s life.

How did you get the job at Pomeroy’s?

Well it’s a very funny story, actually. One day, Dad and I went to the pub and had a few drinks. But the beer that I had was very strong. It was called Epic Armageddon, and I got a bit drunk, and I walked up to the owner of the pub and I asked for a job and I got the job.

Peter Rees at Pomeroys

I love working at my pre-school

by Hannah Proctor

Footsteps

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

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

I have a uniform and a special name badge.

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

My jobs are getting the morning tea plates and drinks ready for the children and doing the dishes afterwards. I also get things ready for the children for lunch time as well.

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

Last year they asked me to work another day, so now I work three mornings a week.

They pay me now too. I feel happy to have a paid job. I like spending my money.

The teachers say they love having me working there.

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

I love my job.

Hannah arriving at work

 

 

By Rebecca Moore/STUFF

 

Flynn Laker is  putting his business hat on, or socks more like it.

At 14-years-old Flynn is learning what it takes to run his own business as well as giving back to causes close to his heart. He has Down  syndrome but is not letting it hold him back from fulfilling his dream of being the boss of a business.

Flynn Laker, 14, sells socks at his popup store at Shelley E Coutts Dance Academy on Tuesday.

With his cousins Nick and Georgia Popham, and his sister Meg Laker, 16, they set up the business Flynn’s Sox.

As well as learning the skills of what it takes to be a businessman, $1 from every sale will go to the Southland Down Syndrome Support Group in Southland.

The launch was aligned with  World Down Syndrome Day on Wednesday, which was why he chose the group as his first charity.

In the future he will donate the money to other charities who have helped him, including Riding for the Disabled and Conductive Education.

When asked about the importance of the business, the first thing Flynn mentioned was supporting charity.

“It’s really positive … the reason we got it is because we need the money for [people with Down syndrome],” he said.

Money will initially go towards helping support people in the region with the condition, then other charities.

On the opening day on Monday more than 200 pairs of socks were sold.

Flynn’s favourite socks were the yellow ones with squiggles – which he called scrambled eggs – and the hot air balloon ones.

However, he picked out all of the many styles of  socks and comes up with quotes to put on tags for each online sale.

Some slogans read “you are the bees knees” and “man you’re going to look cool in my socks”.

Flynn’s mum Tracey Laker said the business was not a lifelong income for him, but starting business was for him to learn the skills of the business and working hard.
“Nothing ever  happens if you don’t put the work in,” she said.

“It’s great to actually help him fulfil  his dream and understand business. It’s wonderful. He’s so lucky that his cousins have been through university and see that he has potential.”

From the moment he was born the family decided he would not be held back by the condition.

“Ever since Flynn was born our philosophy was to support him to be the best he can be and be independent in the future. Children and adults with Down  syndrome have no limit on what they can do. They can be as successful as anyone else.”

The socks were in funky patterns to celebrate difference, she said. “People just love supporting the concept of helping out Flynn in business.”

- Stuff

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.