This week, we attended our "Parent Orientation" session at Thames Valley Children's Centre for the Autism Intervention Program. There were six children represented, including ourselves (three couples, two dads, and two moms). The kids ranged in age from 3.5 years old to age 6. Alanna was far and away the youngest kid in the group at 26 months. Every parent in the room relied on the public system for their diagnosis, waiting an average of 1-2 years for a diagnosis. Not a single child has had any ABA intervention (or probably any intensive intervention of any kind) except Alanna. Many parents were not even aware ABA services could be purchased privately and most were not aware of the costs. I felt like a chump seeming "holier than thou" in the group since we've done our research and almost everything presented we learned months ago.
This has gotten me thinking - are we crazy? We are killing ourselves to pay for Alanna's therapy and while some may argue we have the means to make it work (single parents with other children - it's not going to happen), most parents in the system aren't even aware treatment is possible outside of it. They are unaware psychologists can diagnose autism and a 1-2 year wait just to get a diagnosis is not necessary. If one used "the system", a two year old suspected of autism would not receive intervention until they are five or six if they are lucky.
So on the one hand I have to ask myself, if we are the only parents doing this, are we nuts? Should we back off, restore some sanity to our lives and let the system take over?
Is the reason the Ontario government can under-fund autism treatment because 90% of parents with children with autism don't know anything about how it works? It's one thing to be aware of what is available and not be able to afford it, it's a completely different thing to have zero knowledge of it.
Seeing Alanna's progress, I can't bring myself to think of stopping. We have to soldier on. The system is a failure. Crazy or not, our path is set until relief comes (17 months away and counting down) or we collapse from exhaustion trying to make this work.