I have been working with children, teens, and adults with developmental disabilities for over 20 years now. Officially, I am a healthcare professional; a clinical psychologist and Executive Director of the Gold Centre in Montreal. But in reality, I am a woman who had no choice but to follow her path.
Rose-Coloured Glasses before Life in Grey
I remember my first meeting with a nine-year-old boy with an autism spectrum disorder. He fascinated me. He ran around, hair flowing in the wind, waving the film from a VHS tape, as it shone in the sun. He too was fascinated by the sparking trail the film left behind. This was the first tug at my heartstrings. This took place in Squamish, a village at the foot of the mountains in British Columbia. I was working in a summer camp there, where I had followed my boyfriend, a handsome young Québécois.
When I got back to Quebec, I decided to study psychology. I wanted to better understand the children and adults I had spent time with over the summer. I also wanted to help their parents, for whom there were very few resources. At first, my undergraduate courses taught me very little about developmental disabilities. So, I got more involved, and started volunteering for l'Arche, a residential community for people with an intellectual disability. I continued my studies and went on to get a Master's and PhD. in my field. It was a long journey, but I could finally help the people who fascinated me so. Up until this point, I had been viewing the world through rose-coloured glasses.
Speaking for Those without a Voice
The summer after my Bachelor's degree, I secured a great summer job in a residential centre (or perhaps I should say "an institution") in Ontario. In 2002, the centre was home to only 1,700 adults with a developmental disability (1,000 less than 10 years prior). What struck me most about the centre was that the building's central corridor was over a kilometre long. There was nothing "residential" or reassuring here. One day, while visiting an adult care unit, I opened a locked door to find 10 naked men and women. It was bath time, and they were waiting in line. This was a huge shock for me.
It was then that I decided to work with clients who lacked a voice of their own. Over the following decade, I tried my hand at a variety of positions in the university sector, public and private sectors. Disappointed by growing waiting lists, and frustrated by the lack of funding for creating services for this special clientele, I left the public sector and entered the world of non-profit services.
In 2010, just three years ago, I finally found my place at the heart of a community organization that is supported by a foundation -- the Miriam Foundation -- that helps people with autism spectrum disorders and other developmental disabilities. There I met generous people with a vision who wanted, like me, to create services that would be accessible to more people.
Back to the Beginning
I now work with families -- parents who trust us with that which they cherish most of all: their children. At the Gold Centre, 60 children and their parents walk through our door every day. Whether it is for diagnostic evaluations, therapy for the little ones, or leisure services for adults, we see people of all ages.
All these parents share a common story: they feel forgotten, isolated, frustrated, helpless, and overwhelmed by public sector waiting lists and the lack of support from Revenu Québec and the allocation for disabled children. They are also happy to have found people who share their goals and their hopes: the development of their children. They are afraid to think about the future, and they are all haunted by the question: "Who will take care of my child when I am no longer here?" They are right to worry.
The quality of the services offered by publicly-funded establishments is actually quite good, however the financial support received by the government is not enough to respond to growing demand. When we say that one in 88 children are affected by an autism spectrum disorder, it is to strike at the collective conscience. The only alternative for the parents without resources and waiting indefinitely for services is to turn to private organizations and charities: The President's Choice Foundation and the Miriam Foundation, among others.
The Search for Timely Services Accessible to All
Even if we are proud of our not-for-profit intervention services, which are based on existing best practices, we are equally conscious of the fact that we are only able to respond to a small portion of families in need. It also saddens us that parents have to pay considerable sums to access our services, even though we are partially funded by generous private foundations that aid us in accomplishing our mission.
We professionals specializing in developmental disabilities are constantly frustrated by the lack of attention paid to the needs of parents and their all too often forgotten children. We are perplexed by the current situation: on one hand, we have a short period of time in which early intervention with children can bring the greatest changes to their development; but on the other hand we know, as professionals who have worked long enough in the field, that we must not repeat the errors of the past by creating larger aggregate care "institutions" to respond to the needs of our clientele. It is better to focus on individual development in children, and to act quickly. The government certainly understood the situation, as is evidenced by a Canadian Senate report on the subject titled: "Pay Now or Pay Later: Autism Families in Crisis."
Society as a whole will have to pay later for the services that our children will not have received in time. Recommendations by the Auditor Generals of Quebec and Ontario, as well as the Quebec Ombudsman, are reaching the same conclusions.
A great many of us now have read Emmanuelle Assor's articles on the Huffington Post site, titled "Autism Doesn't Just Happen to Other People" and "Autism: The Day Our Lives Changed Forever," respectively. She touched a chord, a very sensitive chord, as her story is one shared by far too many parents.
After reading one of the articles in question, Jennifer Piché responded by saying "It is through these shared emotions that we find the empathy and the strength to support one another." What a beautiful sentiment. Empathy is exactly what we are trying to create with the See Things My Way campaign.
As for me, that first tug at my heartstrings is still there, but my mission is more urgent. The second tug at my heartstrings, the one I followed to Squamish, became the father of my children. He is the one who always encouraged me to do what I believe in, and never give up.