Friday, April 03, 2009

Putting It All Out There.

I had an interesting conversation with Max's Resource Consultant, Joyce, yesterday. She had called to let me know how her visit with Max had gone at the daycare that morning. Since it was a beautiful sunny day, they decided to take Max over to the Intermediate playground. This playground is much larger than the Toddler playground, has better equipment, and more room to run wild. I was not surprised to find out that Max loved it. I was also not surprised to find out that he pitched a royal fit when they returned him to the Toddler playground. Once you've had caviar, who wants to return to cheese whiz? Apparently this reaction is completely normal, and most of the toddlers object strongly to returning to the Toddler area once they have experienced life in the fast lane.Joyce and I went on to discuss the recent meeting we had at the daycare, my return to work on May 1st, and the dreaded toilet training that we are slowly starting to embark on with Max. She mentioned that she had enjoyed my post about our last meeting, and she hoped it was okay that she had shared it with her manager, who in turn had shared it with her superior...and up the food chain it went. Apparently my post was well received over at the Halton Region offices and is now making the rounds. I'm thrilled that the people who work with Max are reading my blog - it is important to me that they know how much we appreciate their hard work with him. But I am even more pleased that Max's story, and our experience as a family, is being shared with decision makers, and people who can affect change.

For the most part, our experiences with receiving support from Halton have been positive. The only place where it really fell down was the intake process. I had called the Halton head office in August 2007, asking about their DEIPP (Developmental Early Identification Prevention Program) Clinic, and if there were any other dates available to get Max assessed. He was 16 months old at this point, and we knew in our hearts that something was really not right with him. Because he was so young, we were able to get an appointment to get him assessed. There are two key dates I remember very clearly when it comes to Max, (besides his birthday).The day we got the official diagnosis of Autism is one and the other is October 3, 2007, the day of his assessment by Valerie S. at the Halton Region Social & Community Services Department. She was very friendly, and took us into a little play room so she could meet Max and determine if we were correct in our suspicions regarding his development. Max ran around the room exploring, but did not gravitate towards any of the toys she had put out. He sat down and banged his head on the wall for a bit, and then went back to running around. She tried to engage him in appropriate play, attempted to get him to do some imitation, and asked me questions about his medical background. She seemed very disturbed by his behaviour, and to me, it felt like she had never seen a child with developmental delays before, like he had two heads or something.

At the end of the session, she showed me how Max had scored. He was severely behind in every area of development that she had tested him on. You'd think that with results like that, he would get immediate attention, that we would be told how to help our little boy, what to do. Sadly, when I asked "so what do we do now?", Valerie's response was that we would be referred to ErinOak, and a Developmental Consultant would be assigned to him, but the wait list for each was upwards of 8 months. I was too numb to ask follow-up questions, so I packed Max up, and left. I held my tears in until I got to the parking lot, and then I completely lost it. I felt like she had basically told me my kid was retarded (horrible word, I know, but that's how I felt), and pushed me out the door with no guidance as to how we were to proceed.

In retrospect, I know that she was just doing her job and using the resources available to her. But she could have told me about private options like Blue Balloon, where we ultimately ended up taking Max for a speech assessment a few months later. I also know that she likely knew he was Autistic, but was not allowed to voice this because she is not technically qualified to give such a diagnosis. Imagine if she had though? It would have been tough to swallow, but think how wonderful it would have been for Max if he truly had received early intervention from the age of 18 months old. The only support we received was a letter from Halton Children's Services a few months later letting us know about parent support groups we could go to while we waited for services. I think I lit the letter on fire and threw it in the sink. What a paltry offering and piss-poor substitute for what was really needed - immediate therapy for our Max.

Once services started coming through for Max, things got a lot better. We slowly learned "the system" and how to navigate it. We're still learning how to navigate it, how to milk the most out of the services available to us and to Max. I have attended focus groups for Halton, and you can rest assured that I highlighted the issues with the intake process, loud and clear. We're still waiting for the one service that Max truly needs, and that is publicly funded IBI therapy. This will come through by January 2011 at the earliest. In a perfect world, he would have started receiving it in October 2007. In a perfect world...

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