We all have dreams. When our children or relatives are born, we naturally dream about who they will become and the kind of life they might enjoy. When our relative is born with or acquires a disability, many of us stop dreaming. We stop imagining a future full of promise and possibility. Instead we become afraid. Our fear prevents us from thinking about our relative’s future or even our own.
Creating a vision for the future takes courage, especially a future where parents are no longer able to care for their child. It requires accepting one’s mortality. But even more, it requires considering a life for our relative without us around to protect and watch over them. As with Chuck, we may not fear death, but we may fear our child being alone.
Parents of typical children don’t need to plan for the future of their child in the same way. Typical children imagine their own future and step into their dreams. In doing so they force their parents to release them. Parenting a child with a disability is different. Often it is the parents who must initiate the separation from their adult child.
We’ve learned that without a dream, without future planning, and without a vision to inspire the parents, it is virtually impossible to initiate separation from one’s adult child with a disability. Our fears and uncertainty keep us frozen. And yet, in order to be responsible parents, we must plan for a future when we are no longer able to care for our child. In our experience it is essential to dream and to invite our children to dream. We need to dream our wildest dreams, open our minds to bigger and bolder possibilities. The kind of question we ask is important. We’ve learned to ask – “What is a good life?”
Dreaming is the first step to creating a good life. Then it’s important to share your dreams with others. Find people to assist you in creating your dreams. Soon you will discover that dreams shape reality.
When dreaming, it is important to focus on what you want rather than what you don’t want. Dreaming is the first step in the process of creation. All creative acts begin with a dream, of seeing something that doesn’t yet exist.
We’ve learned that dreams are a call to action. They inspire movement. People respond to dreams. We’ve also discovered that sharing dreams is a good way to build relationships. Gordon’s life became full and rich after he began to associate with people who supported his dream and shared his passion.
We’ve learned that the kind of question one asks determines the answer one develops. In the beginning we used to ask – “What programs or services will my child need?” Asking this question gave ‘program’ answers. Eventually we learned to ask a different question. We learned to ask – “What is a good life for my son or daughter?”
To see what we mean, we invite you to read Chuck and Gordon’s Story:
Chuck was like most fathers who have an adult child with a disability. He pushed his son’s future to the back of his mind and hoped for a miracle. Chuck wasn’t an unreasonable man. It’s just that he couldn’t see how Gordon could manage after he was no longer able to care for his son. But the passing of his wife pushed Chuck to face what he had been avoiding – planning for Gordon’s future.
In truth Chuck wasn’t afraid of dying. What frightened Chuck was leaving Gordon behind. Chuck thought of himself as a pretty optimistic person. Yet whenever Chuck thought about Gordon’s future he struggled. He just couldn’t imagine how Gordon could have a good life without either himself or his wife there to support him. As a result, talk about the future rarely occurred. Dreams were seldom shared and dreaming was not encouraged.
Chuck’s plan, at least what he had imagined so far, was that Gordon would continue to live in the family home where he had lived for more than 40 years. Chuck thought this would provide Gordon with something familiar after he was gone.
The weakness in Chuck’s plan was that while many people in the neighbourhood acknowledged Gordon and would say ‘hello’ as he passed, none really knew Gordon. No one knew Gordon’s desires. No one knew Gordon’s dreams. How could these neighbours support Gordon in having a good life when no one knew what a good life for Gordon entailed?
The truth was no one knew Gordon’s dreams or desires. Not even Chuck. Gordon hadn’t been encouraged to dream out of fear of disappointment. Chuck figured that Gordon experienced enough disappointment for one lifetime. And so it came as a surprise to everyone when Gordon responded to the question, “What would you like to do with your life?” with “Ride a horse”. Chuck recalled that Gordon liked horses as a child but had no idea that forty years later the passion was still alive in him.
Chuck decided to help Gordon explore his dream further. The first step was a two-week experience at a dude ranch. When the two weeks came to an end Gordon asked if he could stay on. Gordon offered to work the barns and clean the stalls – whatever it took. Chuck agreed. When Gordon returned home he was ready for more. Gordon made his way to the local riding stables and secured a job.
Gordon, someone who was once labeled ‘unemployable’, was fully employed at the stables. The steady income allowed Gordon to rent an apartment of his own within walking distance of the stables. And his love and skill surrounded him with a group of close-knit friends who shared his passion for horses. Eventually, with hard work and persistence Gordon had enough money to buy a horse of his own.
Suddenly Gordon’s life was full. Chuck breathed easier seeing that Gordon had a small community around him to know and love him. Chuck saw his son grow in stature and confidence in a way he never thought possible. His dream became reality.
Sadly Gordon is no longer with us. We share this story to honour his memory and to inspire others to dream.