Tuesday, March 27, 2012


I think I have some funny beliefs. In recent years, I have come to believe that even if things don't come completely full circle, it seems that some lessons and life experiences we have do happen for a reason.

I think back to when I was in my 20s and I used to volunteer with a friend and her horses. I didn't do it to ride, I just loved being around the horses. They were beautiful, and it was a truly grounding experience. Spin forward 15 years and that love of horses and relationship evolved in to knowing about therapeutic riding and getting B in to riding at a young age. Truly - where he can go with it is pretty endless depending on his love and his drive (and our access to money, ha ha).

Besides all those public speaking competitions in grade school, kissing the blarney stone, and being a generally outgoing person... the years I have spent working in my life of work (student finance to be vague enough) have also taught me how to advocate and put together appeals for people, and with B, how to be persistent, and put together arguments or to lobby on his behalf for services, or better quality care. Even to stand up for him, for us. Tonight was one of those nights. I attended a board meeting to advocate for changes not to their rules, but to their guiding principals. I had previously asked for an exception to be made for priority access to the next care level for B, since he will no longer have a space at the daycare centre he is for grade 1, which was denied last month because of said rules (movement between levels is based on date of entry in to childcare centre), and once I removed the personal element of the decision out of it, I spoke to the board tonight about what a parent like me goes through when decisions like that are made ... we don't have a problem with kids waiting to get in to a program, but to ask for a different kind of priority be given for kids that have community supports in place due to permanent disabilities to move between the levels instead of being kicked out in a school age program because there isn't enough space between the levels.

It is hard to say your child isn't like other kids. That your kid has barriers and challenges, that not every one does. Every one has a story, but ours is a little different. I do not see B as disabled - he is a kid that walks funny. However, at the end of the day, he is different, he gets tired, he falls, he has different challenges than most of us. After speaking tonight... I think the board was willing to make a different decision, even though I was asking about a greater policy change to take principals in to consideration and not just rules. That we weren't just trying to queue jump, and that we did take it seriously about wait lists and priority.

Well, after I spoke... there was some discussion and then the board immediately moved in camera. Which was because I think they were going to revisit this original decision because I think some people were moved by what I had to say, and how I structured my argument.

I am verklempt (one of those rare moments I can use this word in a sentence). This is a hard one to process. Telling our story to the board, persisting, my stomach all rolling about, feeling hyper and the adrenaline rush... and then back to hopeful. I am hopeful that perhaps B can be next on the list, rather than 10th. Hopeful that he can stay where he is, rather than wait for 6 months that hopefully enough spaces will open up that this has all been just an exercise in patience.

My fingers are crossed, I am hopeful... for B to be able to move on to the next level seamlessly and not have to worry about changing daycare and schools is a BIG DEAL. I can handle hopeful. To have advocated for future kids with special needs (I hate this term but it fits) to perhaps be given a different kind of consideration in future... is a big deal. To tie it all together.. all those years of public speaking, and doing my job, have all brought me full circle to be able to speak up, and be persistent, and fight these kind of battles.. when many people would have accepted the first no, and stopped the fight there. It certainly isn't easy.. but I couldn't imagine it any other way.

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