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A personal story

Lawrence, Nancy and Robin Chok

An excerpt from

Talking About: A Series of Community Conversations

compiled by Lorna Sullivan, published by Imagine Better (2013)

We arrived in NZ in 1999 from Borneo with our three teenage children but no relatives or connections in this country. Our oldest child, Robin, was born with Down Syndrome.   We loved and cared for him deeply but our expectations for him were low.   When he finished high school we just did what others around us did and enrolled him on an invalid’s benefit. He stayed home with my wife, Nancy, and twice a week went to a day centre to pursue his passion for art. He watched a lot of TV in those days and depended on us to go places.  He wasn’t expected to look after himself and definitely not expected to contribute.

 

The change came in 2004 after a seminar with Michael Kendrick and Lorna Sullivan challenged my thinking. I began going to more workshops and eventually my wife came along too. We were so hungry for knowledge.

 

In 2007, convinced that we could do more to help Robin reach his potential, we took a drastic step and gave up our business and work so we could focus on helping him move towards an ordinary life.

 

We sought out other families keen to experience this journey with us. In early 2008 we called a meeting at 8am on a Saturday.  My instinct told me that if families were really serious, they would get up early in their quest for a good life for their young adult sons or daughters. True enough they came, although later some of them pulled out as this wasn't for them. Some families want a readymade package for their loved ones, but sadly there were none that would enable our adult children to contribute their skills to our communities. 

 

I asked the families, "What will happen to our children when we are gone from this earth?" This is always a dilemma for families, and especially for parents of a child with a disability. I spoke about my vision of making possible a journey for our son, and encouraged  other families with the vision and energy to realise their children's dreams to experience this journey with us.

 

Next, my wife and I travelled to Canada to look at micro businesses, circles of support andfamily collectives.  On our return, we began weekly meetings to explore ideas with others.  Some families dropped out but four families remained as support for one another, sharing thea common goal of creating fulfilled lives for their loved ones, whatever that may take. 

 

Now it was time to involve our disabled sons and daughters and discover their dreams and hopes. Staff of services came on board and helped us work on person-centred plans, involving our friends in exploring possibilities.  We met once a week for five weeks to vision and plan. We filled in flip charts which, months and years later, showed us just how far we had come. Later we were joined by a fifth family. Now ten parents met monthly in turn at one another’s homes. The meetings and shared meals became part of our lives, and the support we began to give one another became the basis of growing friendships.

 

It took time to build relationships, to get to know each person in the group and to understand our family cultures, customs and beliefs. We accepted our differences and adopted a give and take approach. 

Our five families shared the same vision - all wanting our sons and daughters to live lives of meaning, learn new skills, develop valued roles and create strong friendships.  

 “They were nothing more than people, by themselves.

Even paired, any pairing, they would have been nothing more than people by themselves. But all together, they have become the heart and muscles and mind of  something perilous and new, something strange and growing and great.

Together, all together, they are the instruments of change.”

—  Keri Hulme, the Bone People

We held in-depth discussions late into the evenings and held a weekend family retreat at a local resort, with all our children there, exploring possibilities for those with a disability. These occasions sealed us even tighter into a big family, a team moving forward together.  

 

We came to see that valued roles could come through micro businesses. People could earn an income and become part of the business and local community. We looked at what they liked to do and matched their interests and skills with ideas for business ventures. 

 

We applied for a small start-up fund which we used to set up five of these businesses, each with its own focus. We coached and supported our sons and daughter in business skills but soon our hands were full and we needed more input from others. We invited people in our networks to join a ‘micro business committee’, taking roles such as mentors and marketers.

 

A bit more funding gave us an opportunity to train people to facilitate circles of support both for our families and for others. Through these we built a cluster of networks. Through this experience we learnt how the whole is greater than the sum of its parts. Together we can get things organised so much more easily, and things happen faster and more deeply.  

 

Some families found their circles evolved quickly as they brought structure to existing informal networks. For other families this took more time. We all saw how, once invited, people in our communities were willing to support us. The disabled people at the centre grew in confidence, and now some organise their own circle meetings.

 

Some families set small goals while others were much more ambitious, using many connections to gain the support they needed. Families chose their own pace but no one was left behind.

 

Now, four years later, our son, Robin is an entrepreneur, an artist, a tenpin bowler, a house owner living with university student flatmates. He goes out socializing on Fridays and has weekly coffee sessions with his mates. His neighbours know him and keep an eye on him when we are overseas.

 

Another man in his early 20’s wanted to move out of his family home in the countryside and to start distributing CDs and DVDs. With a small grant he built up his stocks of merchandise, buying through Trademe and other sources.  He cleaned the discs and sold them at the Saturday markets. He gained confidence and enrolled in a polytechnic course in film production, with the support of one of the siblings in our network. As his parents began to see how competent he was, they helped him move to live in town. His next goal is to be part of Peter Jackson’s team.

 

A 30 year old woman, living with her mother and attending a day programme loved to process fruit. She started making and selling jams and preserves, at first to friends, but now at local markets. She has become well known in her community.

 

The bold step, that leap of faith we took in 2008, has paid off a thousand times.

Not only have we supported our son to have a better life, but we also built our own network of friends and relationships. This enriches and sustains us in our lives too.

 

There is still much work to be done, to set up an infrastructure which is able to assume our roles when we, the parents, are no longer there.  But we face this challenge together and we are confident we will find a way to make this happen.