I've mentioned our lead therapist, Mary, a couple of times on this blog. And I believe that I also told you that she was much-loved. And she is, mostly. But let me tell you how weird it is when something like this happens to your child and you find someone who seems to know what they are doing and you invite her into your home, into the very heart of your family, and it sometimes feels like she has the secret key to your child. She has twenty years of experience working with kids like Oliver. And now she has a year of experience working with Oliver. And if she wasn't confident we wouldn't love her as much as we do. But sometimes it really stinks because she says things -- she believes things -- that I just don't like very much. And I'm not sure why I don't like them. Is it just because I'm not ready to see what she sees yet? Or is it because in my heart I don't believe that just because she is so wise and wonderful that she is necessarily right? I don't know but it really stinks -- like a big ole yukky skunk, as Oliver used to be fond of saying -- back before he stopped talking and I stupidly didn't know enough to savor every single thing he said.
So yesterday Mary and I met for coffee to go over the ABBLS assessment to see where things stand. Anyway, I had also asked to see the latest data for his visual schedule, which is currently part of his IEP. To consider it mastered he has to do it independantly 90% of the time and I thought we were probably getting close. And we are, he does almost every step independently except for when an activity is "all done." That he only does independantly 58% of the time. So I asked Mary if you wouldn't maybe see the same thing in any 4 year-old who was engaged in an activity. Wouldn't it also be hard to get any other four year old to stop an activity once in awhile? At that Mary looked at me and I could tell she was considering how to answer. Then she looked me directly in the eye and said:
"Christine, Oliver doesn't do anything like a normal four year old. Any other kid would have figured out the system after two weeks. But let me tell you, for as low-functioning as Oliver was when we first started working with him, he is doing really well. I never would have expected these kinds of results after only one year."
That's pretty much what she said -- word for word. I know because those words have been ringing in my ears and bouncing around my head since she said them.
And I don't know: is she right? Probably. Thank goodness that I don't get to spend a whole lot of time with other four year olds. But I'll tell you, it took a little while for the weight of what she said to fully hit me. He doesn't do anything like a normal four year old? Can that be true? And low-functioning? What the hell does that mean? Do you measure functioning as degrees from normal?
I honestly don't know what normal is anymore. I look at Oliver and I see a little boy who loves and laughs just like any other kid. So what exactly is normal, anyway? And if Oliver isn't normal, do I want him to be?