Daring to Dream
Quite a few years ago my husband, Peter, and I attended a presentation by Pave the Way where the legal issues surrounding a person with disabilities and the concept of support circles were outlined. We were able to very quickly deal with the legal steps that were presented but although the mantra, “People Keep People Safe”, struck a chord with both of us, we found the concept of developing a support group far more challenging.
Although my son Robbie, who is now 21 years old, has a wide range of disabilities and life with him has been extremely challenging and complex, I have always hated asking for help. Since his birth, the help that I have received has come from others suggesting various organizations that could help or funding that could be tapped into. I remember sitting in the lecture trying to write a list of people that I could possibly ask to become a member of a support group for Robbie. Neither Peter nor I have any family members that could be involved. I am an only child and at the time, only my Mother was still alive and elderly and in need of support herself. Peter’s family lives interstate and although his son lives in Brisbane with his wife and two children, one of them also has a disability. Who to ask? Who would be interested?
We put in on the back burner but always felt that it was something that we should do. Of course the question inevitably raised its ugly head at times – what would happen to Robbie when we were no longer around or were too old to look after him properly? This was too hard to contemplate and it seemed far easier to simply bury our heads firmly in the sand! However, Robbie will always need 24 hour care and has very few self care skills. A completely independent life for him is not a possibility. His sister, Laura, is two years younger than him and I have always hated the thought that she would feel ultimately responsible for looking after her elder brother. She should have the same freedom as other young people to do whatever she wants with her life. Having said that, I know that she would take on that responsibility because of the love and concern she has always shown Robbie.
In 2006 Peter and I, together with five other couples, were very fortunate to be involved in a six day workshop held at Coolum called “Visions to Actions through Planning” that was run by Pave the Way. This workshop was what finally gave us the impetus we needed to create a support group. During the workshop we came to realize that although the first steps may be rather daunting, it was very important to have other people involved in our lives with Robbie in more than just a peripheral way. We spent time exploring what a “good life” might look like for Robbie and we began to create a vision for his future. We were encouraged to dare to dream and to look at possibilities rather than impediments to this vision. Given tools and strategies and knowing that we had now had support in moving forward, Peter and I really started to believe that perhaps we could make a support circle a reality.
The last activity of the workshop was to invite people to come up to Coolum for the day to work with us and a facilitator to begin planning for Robbie’s future. It was made easier to ask people because we were staying in a beautiful location overlooking the ocean and they were also being offered lunch. Even so, I procrastinated for quite awhile until I finally plucked up the courage to make the first phone call to a close friend. When she responded very positively and said she would really love to be involved it gave me the impetus to ask others. Everyone responded in the same positive way and even though some were busy and could not come, they all said they wanted to be involved. They also said how honoured they were that we had invited them. One friend said that she had always wanted to help but had not really known how. She was thrilled that we had finally given her a way to help.
Although the friends who came to Coolum were only initially committing to that one planning day, they uniformly expressed an interest in an ongoing involvement and on that day it was agreed that we would all meet again to discuss things further. One of our friends volunteered to organize everyone to come to his house and he typed up all of the ideas that were presented at our Coolum planning day. We all met the following month on his back deck (followed by lunch) and a Pave the Way staff member came and facilitated that first meeting. She brought up the idea of formulating a support group and all of our friends very readily agreed to join the group. One offered to be the group facilitator. And so our support group was born with twelve members including our family!!!
Since then we have been meeting regularly about every six weeks on Saturday afternoons at our place. We have fun at our meetings and often our friends stay on afterwards to socialize. Sometimes we just brainstorm ideas and again, dare to dream. When the group started, Peter and I really had no idea where it might lead but it is amazing what has come out of it. Robbie’s life has really changed for the better and it has been because of ideas generated from the support group. One downside of having the support group is that we have had so much more work to do since instigating the circle, but of course, this is a positive thing. Instead of putting things off, we know we have to report to the circle so it has kept us proactive.
Now that the group has been going for nearly two years, we decided that a review of the group would be a good idea. A Pave the Way staff member agreed to come to our last meeting recently to facilitate this review. As part of this process, he asked the members questions such as “Has the group fulfilled your expectations?” “What have you got out of the group?” Peter and I were amazed at the level of commitment that our friends felt about continuing the group. They unanimously said that they really felt it was worthwhile and that they felt really good about being involved. They also expressed how they knew Robbie so much better and had so much more understanding about how we live our lives with him. (…. and these are people who have known Robbie since birth!!) They all said we should continue to meet every six weeks and that we should also schedule planning days a couple of times a year. The group also decided that we should try to expand the circle. After that meeting I gathered my courage once again and asked another friend if she would be willing to be involved. The immediate answer without any hesitation was “YES”.
As a result of the support circle, Peter, Laura and I no longer feel alone in our quest for a good life for Robbie. We also know that many other people now know Robbie so much better and are seeing him as a person in his own right beyond his disabilities. We also now feel comforted by the fact that if something happened to us and we couldn’t care for Robbie, there would be people who would ensure that our vision for him was sustained into the future.
I would encourage anyone who feels like we did and don’t know quite where to start, to just take that first step and ask one person. You may be as surprised as we were to find that they have just been waiting to be asked.