Max has been on the ErinoakKids wait list for IBI/ABA funding for over 25 months. For those of you who are unfamiliar with the situation around funding for Autism therapy in Canada, I'll give you a bit of background. Max was officially diagnosed with Autism in December 2008 at the age of 32 months. Once he had his diagnosis, he went on a wait list for therapy. Since the key years for intensive behaviour intervention therapy are between the ages of 2 and 5, waiting to start therapy until he came to the top of the list (projected to be sometime this summer, after his fifth birthday) was not something we were willing to do. Instead we have gone heavily into debt, remortgaged our home twice and relied on the incredible generosity of our families to provide Max with the life saving therapy he requires to even have a chance at a life where he can be happy and successful (whatever that looks like for him). Last year Max's total therapy bill came to over $52,000. This year it will be more in the range of $70,000.
As part of the ErinOakKids waitlist, Max was initially assessed in April 2009. The experience was down right awful and I let it be known not only on this site, but via email and phone conversations with the powers that be at ErinOakKids. When I found out that Max needed to have another assessment, this one in our home, I was very apprehensive. All sorts of thoughts scurried through my head. What if he no longer qualifies for funding because he has had so much progress? Not that progress is a bad thing, but we are barely hanging on right now, we can't keep up the payments for therapy if he doesn't qualify. Also, I will lose my sh!t if that same "doctor" who did the initial assessment thinks he is stepping foot in my home. What if Max won't cooperate? What if for some reason he acts totally normal and they think he is "cured"? To say I didn't sleep very well on Sunday night is putting it lightly.
Fortunately, the in home assessment is a lot more laid back than the first one. A very nice Senior Therapist, Chris Bruce, from the ErinOakKids Autism program arrived at our home and introduced himself. Max started objecting to his presence immediately, but Chris wasn't phased and was able to coax Max into cooperating enough that he was able to do the testing he needed to do for the assessment. Add to that, he was kind. And he listened to what I was saying. He didn't get defensive when I made comments about our previous experiences. And the best part, was he was very excited about Max. For the first time in this journey, someone said to me "do you know what the best thing about Max is? He picks things up really quickly."
Do you know what the best thing about Max is?
This therapist, who had only met Max that morning took the time to point out something very positive to me about my son. To say I was blown away puts in mildly. I'm used to getting letters that inform me that "Max is in the bottom percentile for his age" and "Max had a difficult time doing xyz". It lifted my spirits for someone to see Max's strengths and to so generously share them with me.
As Chris was leaving, I thanked him for not having two heads. He gave me a funny look, and I explained that with all of the hoops we have had to jump through to get Max funding, we haven't always been treated well. I appreciated that he was kind and listened and really saw Max for the wonderful little guy he is. Now let's hope that funding comes through soon!