I am the mother of three wonderful children on the Autism spectrum. They are 9, 11 and 14. I struggle to summarize "my story" in this short excerpt, as I have been an autism mom for over a decade and every day brings a new story and a new challenge. I cannot begin to capture all that this journey has encompassed, but here is an ever so small peak into our world.
My eleven year old is the most impacted. We have spent years in various therapies. He has required assistance with gross and fine motor skills, speech therapy and applied behavioural therapy. We were fortunate to have accessed IBI for him when he was 5 years old. He spent two years on a waitlist, but at least he got full time services for a year and another 6 months support with his transition back to school. While in IBI he worked on toilet training and teeth brushing as well as verbal and cognitive skill development. He has a full time EA in the classroom. HIs journey is far from over. We struggle daily to support him and nurture his skill development. This kind of support has been invaluable. I don't know where he would be without. He continues to need lots of support and I am afraid for the future. Because of the high needs of all three children, I have had many appointments and therapies to attend with the kids. The stress at points has been unbearable and I have had to take medical leave from my job to cope. Five years ago, I left a high paying professional job because the hours and inflexibility of the position did not allow me to take the kids to all of their various therapies. It also did not allow me to drop everything when the school or day care called with an issue or problem. My children have been banned from riding the school bus which impacts the hours of day care we need and makes things that much more expensive and stressful. My oldest has been suspended from school for aggressive behavior because he has had difficulty regulating his emotions and has challenges with executive function skills including flexible thinking. As I sat her writing this, my cell phone rang. It was the special ed teacher at Marc's school. He's having an issue with his shoes. She wants me to know that his EA thinks he needs new shoes and could I find some without laces as he struggles with that. Little does she know how hard it is to find shoes that fit him at all, as he has extra wide feel, but he is now at the age where Velcro closing shoes are not readily available in his size. I have no idea where I will find these fantom shoes that the school is requesting, but I'll add it the other hundreds of tasks that I must do for my children this week.
The provincial government's plans to convert everything to "fee for service" will most certainly have a negative effect on him and our other two children. Fee for service therapy is scarce in northern Ontario and even if there were more widely available, the amount of money being offered by the government to purchase services doesn't come close to the actual cost. Not to mention, there is no quality assurance or regulations on who can offer such therapy. Right now, the provincially funded organizations are reliable and qualified service providers. I fear this will end once transfer payments cease. This will leave so many parents without recourse to essential therapies and the progress of our children will be substantially impaired. This plan is so short sighted. Long term outcomes for our kids will be substantially impacted and the already exacerbating level of stress on families will continue to build. If feels as though this government has abandoned us and cares nothing for the future of our kids.