IBI Wait List Assessment at ErinOak.

Max had his long awaited assessment at ErinOak yesterday for the IBI wait list. I had been dreading this day since it was scheduled over a month ago. It should be noted that Max was referred to the wait list at the beginning of December. It took 5 months for him just to get seen to confirm that he is what ErinOak deems as an "appropriate" candidate for publicly funded IBI therapy.

I timed our arrival time perfectly so there would be no waiting. Two clinicians arrived in the waiting room and escorted Max and myself to a room filled with different functional and imaginary type toys. Max immediately sat down at a the pound-a-ball toy (we have the exact same toy at home) and started playing with it. One of the clinicians was a "Dr.Factor", the other's name escapes me. I wasn't given any business cards as part of the introduction (huge pet peeve of mine as I like to have this type of document should I need to refer back to it at a later date). Dr.Factor immediately informed me that he has been double booked and that he can only stay for a half hour of the 90 minute assessment. How about that, eh? We wait 5 months for this assessment, and he is double booked. He seemed non-plussed by this as his counterpart would be continuing on where he left off and they would videotape the assessment should they have any questions. I was not impressed with the fact that he was going to base his assessment of Max, and make a decision that will affect our family's ability to survive financially under the huge burden of IBI therapy on only a half hour of face time with Max. He should have rescheduled one of his double bookings. Max deserves better.

Dr.Factor proceeded to ask me a series of questions about Max's behaviour. I made sure to answer 100% honestly, as much as it killed me to once again highlight that Max cannot count, identify letters, point, make verbal requests, pretend play, engage other children, eat with a fork, and the list goes on. What really upset me was being told that if Max truly "stimms" (Max exhibits typical hand flapping and wiggles his fingers in front of his eyes when he is over or under stimulated), that he would be exhibiting this behaviour all the time. The fact that Dr.Factor did not see Max "stimming" as I was reporting, meant that he didn't truly stimm. This was after only 10 minutes of observation. Max also did not bang his head during the assessment, so I must be lying about the fact that we get woken up multiple times a night to the sound of him pounding his head against the wall so hard that he shakes the house and the neighbours can hear it. He didn't tear at his face with his hands either, so I must also be lying about the fact that Max harms himself when he gets upset.

Dr.Factor also asked me many of the questions multiple times, rephrasing them, and inserting incorrect information (example - after I had said Max maybe has 10 words that he uses echolalicly, but they are very inconsistent, he came back a few minutes later with "So, Max has 20 words?"). I got so irritated by this that I finally pointed out "You already asked me that, no, 10 words". I am not sure if he was trying to trick me, or was just scatter brained. Even better, when I described Cameron as appearing "neurotypical", I was told that parents don't normally use this term, as if I'm not smart enough to use clinical jargon.

I was then informed that should Max be accepted onto the wait list, it is 3 years long, and they are only accepting the most extreme cases of Autism. I was already completely stressed out, so having this information relayed to me (and from what I know, this information is inaccurate) did not help. The truth, according to Pauline Eaton, the AIS Program Manager, is that the wait list is now 22 to 26 months. Also, from what I know just from speaking with other parents of Autistic children, they do not accept the most extreme cases, they accept moderate to severe cases, which Max certainly is. I think that ErinOak could do a much better job of helping parents through this stressful process. Perhaps a Program Coordinator could meet with parents for a few minutes before the assessment to answer these types of questions, and let the clinicians, who lack any kind of bedside manners or soft skills, do their assessments.

I was so upset about this meeting that when I got home, I immediately called MPP Kevin Flynn's office to let him know (as he had requested) how the assessment went. I called and left a message for Kim Pace at Blue Balloon to get her take on what had happened. Then I called Pauline Eaton to discuss the assessment with her and to share my feelings on how it was handled. Apparently we can have Max reassessed if he is found ineligible. I'm not sure whether to laugh or cry about that. We won't find out for at least 3 months as to whether or not he has been officially accepted onto the wait list. If you're doing the math with me, that is 8 months from the date he was referred. Eight months of waiting just to find out if we get to wait some more!

On a positive note, I received the most wonderful email from Kim Pace, (that she sent at 10:41pm!) that proved once again that we have Max in exactly the right place for his therapy. I really believe that Kim is my personal angel, sent to me to help guide me through this journey with Max. I hope she doesn't mind, but I am going to share her email:

Katrina ... you are one incredibly talented, special person and don't you forget it! You inspire me daily!

I am sorry you had a crappy experience at Erinoak today. I am especially sorry that you had that experience on your birthday.

Look past it all - into the future .. several years maybe but there it is....do you see it? That beautiful, smiling, happy boy! That's MAX. That's MAX's voice! That's MAX talking! That's MAX playing with toys! That is MAX calling you "mama".

Visualize it - each and every day and that is what WILL be. Believe it with every ounce of strength you have and there will be no other alternative. I am living proof of this.
Happy Birthday!
Kim