More than autism awarness

Today I received an email telling me one of my baskets was featured on a "treasury" on the Etsy site. You can view the treasury at: www.etsy.com/treasury_list_west.php?room_id=81219. The treasury features Etsians that are involved in raising awareness about autism. My shop announcemet tells of my membership in Etsy for autism and that 10% of my revenue for sales at Etsy goes to the Geneva Centre for Autism in Toronto, a world renowned centre for autism research.

I am thankful for this listing since it will lead to more views of my work as well as aiding in increasing autism awareness. However, my advocacy efforts, those of my wife, Anne, and the work we have done here in Ottawa and for many years in Red Lake have been focussed on raising awarenes not only about autism but also about all people with developmental disabilities.

We were privileged in Red Lake to be associated with Harmony Centre for Community Living. This organisation was established to work with all people with disabilities: people with developmental disabilities, people with physical disabilities and people with emotional disabilities. Our son, a person with autism, had his work, his recreation and his home provided through Harmony Centre. He lived and worked for example with people with Down Syndrome, with a person who was blind, with a person recovering from the loss of a limb, and with people with psychiatric disorders.

From 2001, when we moved to Ottawa, we continued to work through the Families Matter Co-operative Inc. for all people with developmental disabilities. Our lobbying efforts were for all such people, and were not limited to people with autism.

One of the sad features of our culture is that groups with particular emphases too often compete with each other for sparse dollars rather than cooperating with each other. I applaud the cooperation between groups lobbying for the removal of barriers that affect people with physical disabilities and groups lobbying for the removal of less visible barriers for those people with developmental disabilities.

My Grandfather was a carpenter and a member of a carpenters' Union. Their motto, "United We Stand; Divided We Fall" has remained with me to this day. It is a motto that needs to be the focus for all people with disabilities. While we lobby for people with a particular disability, we need to bear in mind tha larger picture too.

Dual diagnosis and autism.

Its been perhaps seven years since our adult son with autism, Adrian, was dually diagnosed as having a major depression as well as his autism. In his depressive state, he gets into rages, stomps his feet, attempts to bang his head on the floor, bite himself, and in the worst cases, bite others. As a 40 year old man who is about 200lbs and six feet tall, it can take a great deal of effort to control him during these rages.

Over these last few years Adrian has had drug therapy to reduce these rages, as well as "PRNs" to be administered to him to calm him down after a rage. Recently, these drugs seem to have been effective in that during the rages he makes ineffective efforts to bite others. Last night, for example, without warning he got into one of these rages and tried to grab my arm to bite me. I was able to shrug these efforts off and to redirect him to relax and calm down while Anne found the PRN pill.

Holidays with Adrian used to be fun times. In the 80s we would go camping in our trailer with Adrian and spend several weeks touring parts of the States and Canada. Now holidays are a period of time where my stomach is in knots as we watch everything we say or do as we wait for the next explosion. Adrian traditionally spends a week at our home for Christmas. Nowadays it is a tense time as we count down the days to when he returns to his group home.

He came to stay with us on Wednesday. We have had two incidents so far, and there are three more days before he goes back. Its not a most enjoyable season. And, there is the next holiday coming up in June that we traditionally have with him. In that holiday we usually take him to a resort within one or two days car travel of Ottawa. Plane travel is out of the question now. We dread the reaction during plane travel to a rage outburst by Adrian.

We also are very much on edge when we take him to visit his brother, sister-in-law and his nephew and niece. His nephew is beginning to ask questions about his Uncle Adrian and why he rarely talks.

As we get older, we feel less able to continue to share our lives with our son. Physically, we have less strength, and emotionally we are drained. Its a dilemma. How do we balance our safety and that of others against the need for Adrian to be with us and to be part of the family? Can we reduce the amount of time we spend with him without feeling overwhelming guilt? Should we even consider that? This is a topic we will have to discuss in the New year with the staff at his residence, and with his psycholgist.

Advocacy Award Wiiners.

On the evening of December 3rd, Anne and I attended the "Celebration of People" Awards Banquet as finalists for one of the thirteen awards presented that evening. This was the ninth annual awards ceremony. The awards: "Celebrate the achievements and contributions of individuals and organisations who promote accessibiity, inclusion and full community participation by citizens with disbilities" (in Ottawa).


Anne and I were finalists for the Advocacy Award in memory of Agnes Wee, sponsored by the Families Matter Co-operative Inc. (for and about people with developmental disabilities). As one of the founders of the Families Matter Co-op, Agnes Wee was inspired to make the world a better place for her son Robert and others with developmental disabilities. The Advocacy Award in Memory of Agnes Wee recognizes the efforts and contributions of a self-advocate, family member, group or organizations involved in advocacy on behalf of a person or persons with disabilities. In particular, this award is given for work done to raise awareness of disability issues and/or work which improves the lives of a person or persons with disabilities.

The two other fianalists for this award were Laurie Alphonse and Michel David.

Anne and I were honoured to receive the award. We were presented the award by our friend and current Board Member of Families Matter, Audrey Bufton. (Top photograph.) The other photo shows Anne and I with Audrey and Marge McCabe, Executive Director of Families Matter.

The write-up description on the awards booklet states:

John and Anne Toft built on their commitment to create opportunities for their son to become community advocates for all people with developmental disabilities. They helped found the Families Matter Co-operative Inc., and as Board members undertook advocacy, membership and fund-raising roles. The Toft's awareness-raising among federal politicians helped bring about the Registered Disability Support Program."

Anne and I thank the sponsors of this award, Families Matter. Without the full support of the Board and the members of this organisation, we could have done very little.