Chris and Lisa, Hailey, Matthew and Ben
Hello! We are the Finch family. I am Lisa, and my husband is Chris. We’ve been married sixteen years and we have three wonderful children, Hailey,14, Matthew,12, and Ben, 10. Both Hailey and Matthew have special needs. Hailey has multiple disorders she deals with every day (Obsessive Compulsive Disorder, AD/HD, and Non-verbal Learning Disorder). We know she will need intervention and support to make her way successfully through the education system, to find meaningful employment and to live independently. So far, fighting our way through the educational system has been draining. Without our advocacy, Hailey would not have gained the support she needed at school. What battles will we fight for her when she becomes an adult?
Matthew has autism. His diagnosis has benefited him tremendously in the educational system. He has a full time EA, and has various sensory and computer equipment that helps him succeed at school. However, fighting the labyrinth of the provincial system has been a nightmare! When Matthew was first diagnosed at age 4 (almost 5), he was put on the provincial IBI waiting list. Because we couldn’t fathom having him wait for intervention, we set up an intensive program at home. Imagine our horror when we discovered that he was about to “age out” on the waiting list, after having had no service from the provincial program at all! Luckily, Matthew was picked up for service just a few weeks before his sixth birthday. He got six months of IBI, then a year and a half of “consultative” service. He went on another waiting list, this time for two years. For several months, I daily emailed Dalton McGuinty, our MPP, and the Minister of Children’s Services. Late in 2006, Matthew got in a pilot program, which focused on “coaching” the family through various programs. This phase ended and Matthew got eight hours of IBI per week. Now Matthew is being transitioned out and his active service will be replaced by a consultative model again. What will the Ontario government offer next? What fresh hell will our family endure on yet another waiting list?
When Matthew finishes high school, we know he will need Passport Dollars, the funding to allow him to access day programming. And we’ll have to figure out how he will be gainfully employed. He will need intervention, job coaching, and a lot of support. Everyone needs to have meaningful work and activities every day of their lives. People with autism are no different. Where will the government programs be then? Will Matthew have to endure ANOTHER waiting list? Or will we, his parents, have to figure out how to fill this wonderful young man’s day? What will happen to Matthew when we are to old to provide support for him? Will the burden be left to his siblings, one of which has multiple disorders of her own to deal with?
Chris and I hope that our children will all grow up to be healthy, happy and productive. Isn’t that what every family wants for their children? We have children with special needs and sadly our provincial government has failed us in so many ways. It shouldn’t be this hard to get information and service for the people we love, in order to help them be contributing productive members of our society.
February 16, 2010