max has a speech therapy angel watching over him.

A year ago today, the world lost Kim Pace, one of the most special people I have ever met. I think about her every day, and I miss her terribly. Every time I drop Max off at therapy I see her photo on the wall, and I wish she was still here. She would be so proud of Max's progress. I know in my heart that she is watching over him and that he has his very own speech therapy angel helping him along. Over the past few weeks we have seen an explosion of language and I can't help but think that he may be getting a little extra nudge from Kim. I can see her now, a twinkle in her eye and her contagious smile as I tell her that yesterday Max asked his first spontaneous and unprompted question. He picked up a water bottle and asked "Is it empty?"and then turned it over and watched the little bit of water left trickle out. As I got a towel to clean up the water I responded "It is now!".

Last week at gymnastics, when asked by a coach he had never met where he wanted his stamp, he responded "My knee" and when I pulled into our driveway that night he commented "Aaaaaand we're home". The funniest comment he has made was at my friend Shannon's house when he ran up to the pool gate and hollered "Come on! The gate is locked!". I also enjoyed his observation after I primed the walls of our previously red dining room, "Wow, it's white". Not only is he a smart little fella, he has a very funny sense of humour. Kim always told me how smart and funny Max was. She saw his magic and helped me understand that with a lot of hard work and a strong belief in my son, I could help Max knock autism on its ass - that it autism wasn't a death sentence. So Kim, thank you for watching over my boy. I'm sending you light and love and please know that you will never, ever, be forgotten.

max update: what a sweet voice.

Depending on how long you've been following Max's progress, you may or may not be aware that I have a YouTube channel set up where I post videos of Max. This latest video of Max is of him singing in his behaviour therapy session. He is lucky to have a therapist who plays piano so beautifully. He has come so far since he started therapy at 32 months of age. Take a look at this video of him three years ago to see for yourself. That's what early intervention and hard work gets you.

2010 autism therapy costs: $65,575.50

This may come as a surprise, but I had no idea how much Max's therapy bills would total for 2010. I figured it was a lot, based solely on the fact that Scott and I have decent paying jobs yet still manage to have bank account balances starting with a "-" sign.  This year's grand total of $65,575.50 is a lot more than 2009's Autism therapy total bill of $52,041.  The reason for the increase is that when Max started IBI therapy in 2009 it took about 6 months for him to ramp up to full time IBI hours (21 per week).   

You may be wondering, how the heck do you rack up over $65,000 in therapy bills for one kid?  Max receives speech therapy, occupational therapy, music therapy, and behavioural therapy.  Add to that psychological assessments and senior therapist planning hours and you land north of $65k.  Interestingly enough, the IBI funding we will be getting through Erinoak for Max is $40,000 per year, leaving us to cover the difference.

2010 Walk Now For Autism in Toronto

Because of Max's intensive early intervention he has experienced incredible progress.  He is starting to use language expressively (including a spontaneous 7 word sentence just this morning).  He is learning how to play with his sister (I dare say they have a fairly typical sibling relationship).  Max is starting to follow instructions and has shown he knows how to do things like tease and manipulate when it suits him.  It is all very exciting and gives us tremendous hope for his future development. 

But there is so much more work that needs to be done.  I would be a bold face liar if I told you that Max will not continue to need intensive therapy for years and years to come.  Because we have exhausted all of our personal funding resources, we have cut back on things like Music therapy (Max's favourite) and now have Occupational therapy only to address specific priority issues so that we can ensure he gets enough Speech therapy and Behaviour therapy.  If I had the means, I would spend $100,000  a year on therapy for Max.  But I don't, so we do our best as a family to get Max the essentials.  Also, without the generous support of all of our family, we would not be in a position to get Max this life saving therapy.

2009 Walk Now For Autism in Toronto

This year we are helping raise money for both National Service Dogs and Autism Speaks.  The money we raise for National Service Dogs will be used to provide direct funding for Max's own service dog (who will be joining our family in Fall 2012).  The money we raise for Autism Speaks will go towards supporting research, family services, public awareness and advocacy.  Thanks to our friends, family, and readers we have raised almost $10,000 through the Walk Now For Autism events in 2009 and 2010.  I hope when I reach out for support this year you will be feeling just as generous! Remember - it isn't only for Max, but the 1 in 70 boys being diagnosed with Autism. 

reassessment for the erinoak ibi waitlist.

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!

Max's IBI Therapy.

Max has a full therapy schedule - it ranges from 14 to 18 hours every week, and will be increasing in the near future. The biggest component of his therapy is IBI (Intensive Behaviour Therapy), but he also receives Speech Therapy, Occupational Therapy and Music Therapy, all at blueballoon.

While I have a fairly good understanding of what IBI therapy consists of, I had never actually seen Max in an IBI session until this week. Brian, Max's main Behaviour Therapist, was kind enough to record part of Wednesday's session for me. The sessions typically run for 2 to 2.5 hours, so this is just a snapshot.


This video captures Brian working with Max, using several reinforcers (a stretchy snake, vibrating elephant, and wolf). I am really glad that we have started taping sessions, as I think it will be a good tool to track Max's progress. I only wish we had taped sessions when Max first started working with Brian in January (though I'm guessing it would have been hard to watch them as Max struggled with compliance for the first while).

What blows me away about this video is Brian's intensity level. Can you imagine keeping this up for over 2 hours? Plus, this is Max on a good day. Some days, for whatever reason, he isn't nearly as agreeable as you see him here. But just because Max doesn't feel like working, doesn't mean that he wins the battle, it just means Brian gets to work all that much harder. So, big ups to Brian and the rest of Max's IBI team! I'm looking forward to sharing more video of Max in the future (hopefully by then he'll be able to say "Mommy" when he is shown a picture of me).