Families working together to realise our hopes and dreams
While searching for our son’s journey to live an ordinary life, my wife, Nancy, and I decided not to go alone. We sought other families keen to 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 a good life for our son, and encouraged other families with the vision and energy to work to realise their children's dreams.
Next, my wife and I travelled to Canada to look at micro businesses, circles of support and family collectives. On our return, we began weekly meetings to explore ideas with others. Some families dropped out but four families remained to support one another, sharing the common goal of creating fulfilled lives for their loved ones, whatever that may take. We called our group the Families Action Support Team (FAST).
Then we involved our disabled sons and daughters, seeking to discover their dreams and hopes. Staff of services voluntarily 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.
Then we met monthly 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 four families shared the same vision, wanting our sons and daughters to live lives of meaning, learn new skills, develop valued roles and create strong friendships.
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.
All our children are now living independently in the community. Some are also operating their microbusinesses and engaging with their community. Some have changed their dreams and are pursuing new ones.
We are currently working on the 50 year plan to position our children to live meaningfully with continued support from service providers, siblings, neighbours, friends and community. We are working towards a sustainable structure for the siblings and others so our young people may continue their journeys.
This gives us some comfort, knowing they will continue to lead good lives when we are no longer available on this earth.