Transition into the workplace and holding down long-term employment remains a challenge for many adults with Down Syndrome. COEN LAMMERS examines the employment sector, the access for people with learning disabilities and the success stories that might inspire others in the community.

New Zealand has a long and proud history of mainstreaming students with disabilities, but many families feel they are dropping off a massive cliff at the end of high school. The pathway between pre-school, primary school and secondary school is clearly sign-posted and well-supported, but where to from there? Finding your own place in the world is an intimidating challenge for every young adult, but for people with Down syndrome and their families, it often feels like the big unknown. Securing employment is a key element for a rewarding life and gives every person a source of pride and independence, but for many people with learning disabilities full-time, long-term employment appears to be a pipe dream.

“New Zealand is doing as well as any other country getting people with disabilities into employment, but we still have a long way to go as far as creating better pathways for younger people,” says Grant Cleland chief executive officer of Workbridge New Zealand. Workbridge is the country’s largest “pan-disability” employment service provider and assists around 3000 people with disabilities to secure employment each year. Over the past decade, Workbridge has linked 36,800 New Zealanders with learning difficulties, mental health issues, sensory, physical and other disabilities or health conditions with a suitable job and supports them to be successful in the workplace. Cleland says that his organisation in 2017-18 had 1,664 employers who listed 4,061 vacancies with us, of which in 1,332 provided a job for our jobseekers and 55% hired more than one person with a disability. The list includes several strong national partnerships like, Accor Hotels, ACC, IRD, Victoria University, Westpac and of course Z-Energy who in recent years alone have employed over 300 people with disabilities. “Those companies are leading way, but the list is growing each week.” He says that the attitudes around employing people with disabilities is changing rapidly and is no longer seen as charity or a community service. “Employers are more willing to try new things, are getting more disability-confident and the conversation around disabilities has become much more genuine,” says Clelland. He says that the staff shortage for many companies has opened their eyes to a new talent pool that they had not considered. “There are a lot of myths around people with disabilities, but the research clearly shows that they are just as productive as any other employee.”

Grant Clelland

Grant Clelland

Cleland says that some employers are wary of looking at this group because they fear that a worker with a disability may require significant support and resourcing, but research shows that less than 10% of disabled jobseekers need some additional support or alteration to their work station. “Research shows that hiring a person with disability has a wonderful impact on the workplace and is also a good reflection of our community as 24% of New Zealanders have some kind of disability, illness or long-term injury.”

Employment is one pathway for people with disabilities, but many families in the Down syndrome community have decided to take control of the situation by creating their own micro-businesses. “Ten years ago, there were maybe five micro businesses around New Zealand, but now there are hundreds,” says Lawrence Chok who has been driving force behind many of those micro-businesses. With a background in the corporate work, Chok decided 11 years ago that he wanted to create a micro-business for his son Robin, who has Down syndrome, but realised he could not do this alone. “Many microbusinesses fall over after 5-10 years when the families simply run out of puff,” says Chok, who formed Family Action Support Team (FAST) with three other families in the Palmerston North area, with a variety of disabilities. Chok visited Canning in Canada to research a successful CAPRE (Community Association of People for Real Enterprise) model and the group started four micro-businesses that tapped into the passions and the skills of their children. He says the past 11 years have been an amazing journey for all four children and even though not all businesses are still going, the work has morphed into new opportunities. One of them still runs a business, while one of the other participants has worked his way through script writing courses and hopes to get employed with Peter Jackson. “And they are all living independently.”

Chok now runs two-day workshops across the country to help families get started and travels around the world to find new innovations to help people with disabilities. Coming from the corporate world, Chok says he was mainly focused on the businesses making a profit and being viable in the traditional sense, but soon discovered that the micro-business model had very different goals and success milestones.“I was looking at it completely the wrong way and the lot of families do, until I realised that this micro-business model needs to be about the total well-being of the individual,” says Chok. “Why do most of us do the job that we do? Because we follow our passion. So why don’t we let our children follow their passion?” He says that many families trying to get and keep their child into employment are struggling and are stressed and that some employers also find it challenging.

“For many it feels like they are banging their heads against the wall,” says Chok who is clearly frustrated that the Government spends millions on securing supported employment but does not encourages micro-businesses, for example by raising the amount a person with a disability can earn before they lose their allowances. Canadians are ahead of Aotearoa as the individual’s microbusiness can earn as much as $9,000 per annum before it affects the individual’s supported living allowance. In the model that Chok shares with families he advocates for working smarter, not harder. “Families need to learn to use the three Os: Other People’s Time, Other People’s Money and Other People’s Services.” He says there are plenty of people in the community who want to support these kind of micro-businesses, and sufficient financial support available among different agencies, once you know how to use the system and access the funding.

Lawrence Chok

Lawrence Chok

Chok says that the positive changes he has seen in the young people he has worked with have been phenomenal. “Once you get total engagement of the individual, they grow in confidence, learn new skills and they walk differently and talk differently.” Chok is the first to admit that a micro-business is not the only pathway for people with disabilities to lead a full life, and says it may not suit every family.

The Te Mahi Trust is one example of families getting together to create a micro-business when Rachel Hill and Alison Faithful in Northland were grappling with their children leaving school. The Trust has a vision to run a catering business or café for young adults with a disability, and have started by purchasing a coffee cart, in which two young adults sell coffees, cold drinks and food, supported by one carer, at community events and at a road side fatigue shop.“ We are hoping the people of Whangarei are ready for it,” says Alison Faithful, who hopes the cart will secure a permanent spot in town soon.

Lawrence Chok and Workbridge’s Grant Clelland are both encouraged by the growing number of success stories in the disability sector, but the latter says the education system needs to do better to prepare people with disabilities for a working life. “Schools do a lot of planning for transition out of school, but it does not often lead to employment. Instead the school transition often leads to a day service option, because their biggest block is access to employers.”

To show schools what is possible, Workbridge last year piloted, Z in schools, where students in Special Units from Papanui and Riccarton High Schools in Christchurch could apply for four internships with Z Energy. This included students with learning disability. The students who might normally have struggled to find employment completed a 12-week internship which led to a Service IQ Level 2 Retail Certificate and for one of the student resulted in a full-time job. The trial has been so successful that it is now extended to Auckland and Dunedin.

Cleland says that some schools are better than others in preparing their students for the workplace. The aim of our work in schools is to create a pathway into employment for disabled school students, with employers who are already employing the jobseekers Workbridge work with. “We think more students need to get the right learning support to prepare them for employment. With Z in School the schools were able to able to teach the Service IQ Level 2 Unit Standards to reinforce the learning in the workplace,” says Cleland who himself grew up with a disability but had parents with high expectations and willing to challenge the status quo.

One company that is proactively trying to fill that gap is Kilmarnock Enterprises, a Christchurch business that employs differently abled people and aims to change attitudes around people with disabilities. The company was founded 60 years ago as a protected workshop but has evolved into a complex, thriving business that focuses on enhancing the skills of their workforce. As a registered charity, all profits are pumped back into Kilmarnock Basecamp, where the company provides education, health, and skills training for its employees. “Our staff learn more skills, which means we get more adept staff who enable us to be more successful. It’s a win-win situation,” says Tim Jones, General Manager Growing Good at Kilmarnock. “We don’t look at the things they can’t do, but find what they are good at, what work they enjoy and then try to build on those personal skills,” says Jones.

Last year, the Kilmarnock Academy was established to help graduates find meaningful, sustainable open employment outside of Kilmarnock. “Previously, our employees came to us, and more often than not, stayed in our employment till retirement,” says Jones. “But we now wish to only be part of their journey, and not the destination. With the right training, support, and encouragement, we can all achieve incredible things.”

Kilmarnock used to compete for work because their workforce was paid below the minimum wage, but Jones explains that companies are now using their services simply because his team can do certain jobs better than anyone else.“Some of our staff still earn below the minimum wage, which is often at their request so they don’t lose their allowances, but our company is committed to have everyone on the minimum wage in the very near future,” says Jones. Workbridge boss Grant Clelland says that his organisation does not want to use subsidised wages as an incentive to secure a position, but strives to have all their clients in “open employment” which means the same conditions, responsibilities and pay as their colleagues. “Probably less than one per cent of our clients have some sort of subsidy for their wages to entice their employer to take them, but all the others are employed simply because the employer wants them for their skills.”

The chief executive says New Zealand still has a long way to go and lacks an employment-focused national strategy like Australia and other countries have adopted. “We still have a welfare strategy where people think about losing benefits instead of thinking about the skills and strengths people with disabilitiescan offer the work force,” says Clelland. “Until we change that policy and mindset, with families and at Government level, we will continue to create a lifelong dependency.”

By Fiona Kenworthy, Clinical Director and Specialist Paediatric Speech-Language Therapist at www.smalltalktherapy.co.nz

 

For the last ten years, I’ve specialised in working with children with Down syndrome. I’ve seen the way ‘early intervention’ yields long-lasting benefits for the child and their family. ‘Early intervention’ for children usually means the first five years.  

They are the golden years for setting kids up for how you want them to thrive. 

Here’s my five top tip gems for getting a great start: 

1. Aim high, have fun!  

Research on families with a child who has a sole diagnosis of Down syndrome has found them to have essentially the same quality of life potential as everybody else. 

Adjustments to priorities and routines must be made of course. Have high expectations, seek support from others and have as much fun as you can. Which is pretty much the same for kids everywhere. 

2. Get active early!  

It’s never too late to start speech therapy. But the more time and energy you can invest in the early years, the bigger the pay off. 

Six months of age is a great time to get going. Tap into the critical development periods, when the brain is geared for learning. Get networked in withother families of children with Down syndrome. 

Build genuine partnerships with the right team of skilled, caring professionals who support, inspire and empower you. Put time aside for home practice and courses. And speak up when you need to you know your child better than anyone, so you are their best qualified advocate. 

3. Keep the ear infections at bay!  

Eighty percent of children with Down syndrome are prone to recurrent ear infections. It may sound minor, but hearing impairment has a significant long-term impact on speech and language development, with flow on effects to all areas of life and learning. 

Some children won’t show obvious symptoms. Ask your GP to monitor them regularly. 

4. Have fun with new words every day!  

Whether you sign, say, or act something out, it all adds to your child’s vocabulary. Children with Down syndrome sometimes struggle as they don’t always perceive or recall spoken words. Children who learn to repeat words accurately are better at taking in new vocabulary. And the larger their vocabulary, the better their spoken language and long-term 

communication ability. This also helps set them up for literacy and school. 

5. Attend an SLT Hanen workshop.  

This teaches the basics of human communication – why and how children communicate. Children whose parents use Hanen produce more spoken and/or signed words. 

It’s also great for your relationship with your child. 

Attend a Makaton workshop too. Signing is a useful way to relieve early frustration, teach children the foundations of language, and provide a stepping stone to talking. Sign up for these courses while your little one is between 6-24 months to get the most out of them. 

Every parent will be faced with an avalanche of decisions about their child throughout their life. But taking these first proactive steps will put you and your child in the driving seat.
 

By Glen Jelley 

 

Jessica was our first child of 3 and we knew at the 19 week scan that she was going to have down syndrome so had a bit of time to prepare and research. 

She came into the world screaming her lungs out like any other child with people rushing around testing this and that. It was a good 15 mins before i was able to hold my beautiful baby girl. The next few days consisted of xrays, heart scans and blood tests. The results were encouraging with a small hole in the heart that they were confident would close over itself. 

We were able to take her home at around 6 days old. We were home 3 days when we received a phone call from a parent of a child with down syndrome that i used to babysit when i was in my teens. They started of with congratulations then proceeded to tell me about everything Jessica would never do, one of which was ride a 2 wheel bike. Not sure why that stuck in my head but it did. 

We were very lucky with the support services we had and got a lot of great advice. Not all of it was relevant but our thoughts were ‘listen to everything, take what works for you at the time and put the rest in the memory banks for later.’

We had her in a walker and jolly jumper from the time she could hold her head up herself. Once she could sit up by herself (around 12 months) we put her on one of those wee 3 wheel plastic doon buggy bikes in the house. Once she got the hang of not running over her feet, she was off. We also took her on lots of bike rides behind our bikes on a half wheeler I adapted to hold a car seat. I believe this helped with her balance. She loved it but would often go to sleep. 

Bike modifications

From there at around 2 and a half (she was just starting to walk) we went to a balance bike. She kept going back to the doon buggy as it was easier so big mean dad put it away in the garage. With a bit of work from Mum and Dad on the front lawn she soon mastered the balance bike and got up way too much speed for my liking as they don’t have brakes lol. 

She stayed on the balance bike till she was about 4.  We then stepped up to a 12 inch 2 wheeler pedal bike with training wheels. Looking back I think this is where we made our biggest mistake. We should have persevered and gone straight to the pedal bike with no training wheels, but as we were both working full time time was limited and this was the easy way to get her on the pedal bike. She stayed with the training wheels for about 2 years. We did lift them up and tried briefly a couple of times to take them off without success. 

Family bike ride

When she was around 6 or 7 we were at Miller’s flat camping at Christmas time for two weeks so we decided to make a concentrated effort to get those training wheels off. I took the training wheels off and we went over to the local school rugby field. Now I’m not going to say it all went smoothly and she was off and riding in a day, far from it. There were crashes, tantrums and plain old sitting on the ground and refusing to get on it. But with a bit of good old bribery and determination on her part we got her riding by the end of the holidays. Just by running along behind her holding her then the good old ‘yes Jessica i’m holding you’ (but not really) until she was off on her own. 

Jessica riding the trails

Now at the age of 10 we are all out riding the trails. She is now on a 18 inch bike with gears. We ride around 8 to 10 km’s at a time. That is more limited by her younger brother. Our big aim this year is to bike 13km’s from the camping ground to pinders pond, spend the day swimming and ride back home again. 

This year she is doing the bike section of the quadrathon at her school. Last year she did the 2km road run with her TA. 

What we have learnt and the moral of the story is given the same opportunities and a little extra pushing/encouragement (with some thinking outside the box) as a typical child they might just surprise you by what they can achieve (subject to what the doctors may have told you). 

The Champion Centre in Christchurch has kindly agreed to provide a regular contribution to CHAT 21 to assist parents of young people with Down Syndrome. In this edition, Dr. Susan Foster-Cohen, Champion Centre Director reviews the guide Are You Worried About Your Child?

Are you worried about your child? A guide to support families of children with complex needs and the professional who care for them (This free guide can be downloaded from: http://www.tacinterconnections.com/images/Guide2-to-Support-Families-of-Children-with-Complex-Needs.pdf)

A group of professionals from the UK, South Africa, Australia, Italy, Canada, and New Zealand, including The Champion Centre’s founder, Dr. Patricia Champion, has compiled this 20-page guide aimed at supporting parents raising children with disabilities to feel less tired and stressed and to enjoy life with their child. Written in an accessible style, it consists of five main sections, each one addressed to both parents and professionals and illustrated with comments from parents about their experiences. The introductory section ends with the following challenge that speaks to the hopes and fears of many parents:

Wouldn’t it be nice…

…if your child received the same welcome to the world as every child?

…if you were seen as the expert on your child by everyone?

…if you felt you were listened to and knew people who share you concerns about your child?

…if you felt cared for and supported by an understanding community?(p.1)

A child having fun at The Champion Centre

The first of the main sections “Let’s start at the beginning”, explains the guide is “to help you and your family manage everything without getting too stressed and exhausted” as well as “help you create enjoyable moments together with your child every day.”

In other words, it aims to help parents achieve a better quality of life for themselves, their children and their family.

Its call to professionals in this first section is to put their focus on supporting the family to promote the best possible relationship with their child and the wellbeing that it brings.

Working on hand-eye coordination

The second section, entitled ‘Respect”, puts the focus on how families cope with the news that their child has an illness or disability and encourages them to celebrate their arrival as they would any other child.

It reminds parents that all children need love, warm responsive predictable care from their parents, safety and fun, even while it acknowledges the sadness many parents feel.

Mum and daughter working together at The Champion Centre

It encourages parents to find those friends, other parents, and sympathetic professionals who can support them.

It then encourages professionals to recognise the multiple sources of stress in parents, to always to ask them about their priorities and to work in partnership to plan a respectful way forward.

Children enjoy the challenge of the playground

“A quality of life”, the third section, addresses causes of stress in lives made overly busy by multiple appointments, assessments, and interventions.

It asks parents to identify, through a series of questions, where those stresses lie and what might help.

The questions include “If you have been keeping it all to yourself, can you find someone to talk it over with?” “Does your child sleep badly?” “Are you struggling financially?”

The advice to professionals in this section suggests that not all parents will admit to the levels of stress they are under and may need them to open the conversation and listen carefully to what parents are saying.

It also urges them to put the infant’s quality of life at the centre of their thinking and to help parents get a break from caring if that is what they need.

Early intervention at The Champion Centre

The fourth section, “Keeping it all together”, is about making sure that early intervention is coordinated, integrated and working towards common aims.

It acknowledges that in many cases, parents are left to pull everything together from an often overwhelming number of different appointments and professionals.

It proposes a key worker model or a multi-disciplinary ‘Team Around the Child’ approach that includes parents as team members and can help avoid them having to answer the same questions over and over again, and of getting different and conflicting information in response to their questions.

Early intervention at The Champion Centre

Finally, “Getting the Family Back on Track” is about looking towards the future when parents become more confident in parenting their child and feel in charge of their lives.

It includes the sage advice that “one of the best ways of caring for your child is to look after yourself.”

At the same time professionals are reminded that “Families need to find time and energy to enjoy being together, to develop strength and resilience. Families need to move at their own pace without pressure to conform to other people’s timetables”.

But they are also reminded that “while it is a professional instinct to be positive and upbeat about the child, this can sometimes discourage parents from voicing their anxiety and other negative emotions.”

Throughout, the guide is gentle in tone; asking questions to help parents and professionals solve issues for themselves, rather than telling them what to do.

Together with the honest reflections of parents that appear as margin quotes, this guide will help families to understand and express what they experience, encourage good communication between parents and professionals, and introduce both to practical ideas that can help improve quality of life for child and family.

Children enjoy music at The Champion Centre

Reviewed by Dr. Susan Foster-Cohen, Champion Centre Director.

 

 

From sign to word: One size does not fit all.

INTRO:
Early intervention experts Susan Foster-Cohen from the Champion Centre in Christchurch and Anne van Bysterveldt from the University of Canterbury have found some interesting patterns when researching the use of sign language alongside developing speech.

In New Zealand, most children with Down syndrome are explicitly encouraged to use manual signs (either home signs or NZSL signs) as a means to help children communicate and encourage their spoken word development.

The value of this approach is now well established thanks to the work of researchers such as Sue Buckley, Carl Dunst, and others.

However, we still don’t know much about how individual children use their signs and words as they move through early childhood and what parents and teachers need to know in order to encourage the transition to spoken words.

In our research, we have been examining the make-up of children’s vocabularies and how they change over time, because children appear to vary greatly in the degree to which they use signs, both initially and over time.

Some children start out using (almost) exclusively sign and then gradually transition to only using spoken words. Other children stay with sign as their primary means of communication or they operate with a bilingual system where they use both sign and word for the same thing.

We asked parents of children with Down syndrome attending the Champion Centre to complete the New Zealand Communicative Development Inventory (CDI) every six months from the age of two-and-a-half or three to when they went to school.

The CDI has a list of 675 items that are typical of pre-school children’s vocabulary (including words for food, animals, places, people, colours, etc.) and we gave parents the option of indicating whether their child had a sign, a word, both, or neither for each item.

All the children were growing up in spoken language families (i.e. none were using a full sign language).

We were not worried whether the sign was a recognisable NZSL sign or a hand gesture the family had come to recognise as a sign; and we were not worried about whether anyone outside the family could understand either the sign or the child’s version of a word.

We simply took the parents’ perspective on their child’s communication, which they knew so much better than we could ever know as researchers.

We are immensely grateful to the parents for completing this rather tedious task so often as part of our study.

When we looked at the changes over time for each child in the study, we found a number of different patterns which we can illustrate with the graphs below. In these graphs, the green bars show the number of words for which a child used only sign, the blue shows the number for which they used both sign and word, and the red shows the number for which they had only words.

Graph 1

In the first graph you can see data from a child who started early in her transition from sign to word, progressing steadily over the time period from 36 to 66 months, and went on to school using mostly words and just a few signs, most of which had a word equivalent as well.

As a strongly oral language user, this child is likely to be able to use her spoken language in the classroom and to be understood by her classmates and teachers.

She does not, however, have a very large vocabulary overall, as measured by the CDI, having only 234 of the 675 possible items that can be ticked, so we would hope to see her teachers encourage her vocabulary to grow now she has the transition to spoken words sorted.

Graph 2

In the second graph we see a child who has a larger vocabulary at school entry (384 items) and a greater proportion are signs.

It does appear, however, that this child ‘got the hang of’ spoken words somewhat later, fairly shortly before transitioning to school and will be using both sign and word with their teachers and classmates.

Here we would hope that the school welcomes the use of signs and supports what looks like the beginning of a strong transition to spoken words.

Like other researchers before us, we found a range of patterns such as these. In addition to the two patterns shown here, we also found some children who never, or almost never, used sign but who still succeeded in building a spoken vocabulary and children who used only sign and did not succeed in developing spoken words before they went to school. This last pattern only occurred where the overall vocabulary was very small.

However, unlike other researchers, we did not find a minimum of signs was needed before spoken words emerged. Indeed, some children in our study were able to use spoken words as part of even a very small vocabulary.

The important points to take from our work, which we have presented at national and international conferences and are currently writing up for publication, are:

(a) that each child with Down syndrome is an individual and will use signs and words to engage in the key relationships in their lives;
(b) that parents and others should offer and encourage both signs and words when engaging with children, so that the child can take and use what makes the most sense to them; and
(c) that teachers and speech-language therapists should know about the early developmental path of sign to word of each child so that they can support the continued growth of the child’s communication in school and beyond.

We have known for some time now that language development continues throughout childhood, adolescence and into adulthood for people with Down syndrome and that continuing to support that development is vital.

That lifelong trajectory starts with the early years we study at the Champion Centre.

Dr. Susan Foster-Cohen is Director of the Champion Centre and Adjunct Associate Professor of Linguistics at the University of Canterbury.

Dr. Anne van Bysterveldt is a Speech Language Therapist and Senior Lecturer in Early Intervention at the University of Canterbury.  

Child at The Champion Centre

 

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.

 

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