By Beryl Sawyer
The question is asked tentatively: “What is it like to be the mother of a son with a disability?” The nuance hovering over this is “Am I encroaching on your privacy?” Perhaps the friend or acquaintance is really asking, “How would I cope if one of my children develops a disability?” I’m not alone, I know that, and I am always open about our family experiences and the pieces we have put into place to give our son, Colin, a good life. It is helpful to others to know, and very rarely are they asking simply out of curiosity. Many have close relatives with a disability and have been reluctant to share that knowledge with others. This makes for isolation and it has been said that “isolation” is the disability!
At 31 Colin had graduated from high school and technical school with training as a computer technician. Unfortunately, although computers were being installed in commercial businesses, the economy took a dive and all the beginning jobs dried up. After an initial struggle, Colin found a job downtown and worked for six years in a retail store selling electrical equipment. Then the owner of the store declared bankruptcy and Colin was out of a job. It was then that Colin began to become confused with the details of his life and we, his parents, tried to give his life some order. As things worsened, we realized that professional help for Colin was needed. Naive as I was, having no experience of psychiatric medicine, I thought that once Colin was admitted to the psychiatric department of the University of British Columbia hospital, after a while, with the right medication Colin would emerge a renewed and invigorated young man.
I was about to encounter a steep learning curve! As the doctors tried one drug after another, I found a ‘different’ Colin each time I visited him. Day after day, at the end of a visit I would sit in the car before driving home and cry. I was bewildered and didn’t know what to do to help my son. MRI scans showed Colin has some brain damage. The cause has never been diagnosed.
It was another two years before I found PLAN (Planned Lifetime Advocacy Network). In those two years I had been looking for all the help I could get in order to be the advocate that Colin needed. PLAN has helped us along the way. It is twenty years now since we joined the organization. We began as many of the lifetime members have begun, by being shepherded through the maze by understanding people; people who had been there themselves. The network began as soon as we had our will with a discretionary trust in place, with a clause to enable PLAN to mentor the network when we, my husband and I, were unable to do so. This is of vital importance to me, as I feel sure Colin will outlive us. Later came the Representation Agreement, put together by Colin with the help of his network members. Recently, this has been invaluable, as Colin can no longer sign his name. At a potluck dinner the network helped Colin with his wish list. Starting at five years down the road with the “anything goes” items and narrowing it down to “who is going to do what and when”. Many of those desires were met including a trip to Mexico and later one to Hawaii. The latest piece that we have added for Colin’s security has been a Registered Disability Savings Plan (RDSP). My experience as Colin’s advocate has been a positive one. I have become more self-assured. With the weight of the membership of PLAN behind me, I have no fear of facing a room full of professional medical staff and asking the pertinent questions and insisting on a fair deal for Colin in addressing his needs. I am quick to commend professional staff whenever I see an opportunity. I have visited groups alone and with other family members to talk about PLAN, and have conducted orientation to PLAN sessions at the office. I have been a member of the board of directors and am now a member of the Lifetime Members Committee. I started volunteering at PLAN by running the photocopier. I used to be so shy, and PLAN has helped me to break out of my shell and become more confident knowing that a wonderful network of families and friends support me.
Unfortunately, over time, Colin’s health has deteriorated and he is now confined to a wheelchair and needs extended care. He lives in a care centre close to us and as I too have encountered health problems I am enabled to visit him often. He still has a quirky sense of humour and a lopsided smile. Recently I assured Colin that the members of his family loved him very much. After a long pause he turned to me and said, “I love you too, Mum!”