I'm not going to lie. 2010 was a rough year for us, in ways too numerous and depressing to list. For me personally, it was a year of things that I desperately wanted to work out ultimately NOT working out, in dramatic failures. For Schuyler, I suspect 2010 was even worse, a year in which her understanding of her own real differentness coincided with her classmates beginning to pull away from her and her strange, childlike ways. It was the year that I felt like her school might have begun to give up on her in some small ways, too. I'll always remember that 2010 was the year that we were asked to allow Schuyler's school to classify her as retarded.
I guess this year was the first time I realized that there are situations in which Schuyler attending school in a district with such a strong special education program might actually work against her from time to time. I have come to believe that there's a mindset that can take place in a strong program, one that suggests that they've seen it all before and know what will work for just about any kid, so if a kid is still difficult to reach, it must be because she simply CAN'T be reached. Schuyler is a very different kid, as I believe every special needs kid is wildly and perhaps sometimes tragically individualistic. Subsequently, I believe it's a mistake for any professional educator or therapist (or parent, for that matter) to believe that the past is always going to inform the present.
But I'm not a professional teacher. I'm a parent, and if I'm once again overbelieving in Schuyler, it is right and appropriate for me to do so. I don't think 2011 is going to see any change there.
It's hard, because one thing has truly changed this past year. Schuyler has a wish, although I'm not sure it's one that she would ever put directly into words, and it is the one thing that she can probably never have. Schuyler wants to be like everyone else. She wants to fit into a grey world of interchangeable children where no one strains to understand her. She wants to choose and build her weirdness for herself. The fact that she is unique in the whole world is not a very very special fact that thrills her now.
It still thrills me, though. It scares me and it haunts me, true, but it also thrills me. Most of all it makes me grateful that I am the one who gets to be her father and her guide in a world that doesn't exactly know what to do with a little girl like Schuyler and her monster. It's a full-time job, it's what I am supposed to do, it's who I am supposed to be, and while it precludes a lot of other things that I can't do or be because of it, it also makes me unique in the whole world, too.
Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.
Schuyler's challenges in this world, every last one of them, now involve her attempts and the attempts of her family and teachers and therapists to integrate her into our world. She doesn't fit, not entirely and sometimes not even mostly, but it is required for her to fit, so we struggle to make that happen. I am not at all sure, I am in fact entirely UNsure, that we are doing her a service by even trying, but there aren't viable alternatives and so we do it. I get the sense that this year will be a crucial one in this questionable but necessary work.
For myself, 2011 must be a year of changes, and the aspects that I can control are the ones within myself. When I go back and read the things I wrote over the past year, I saw a subtle change. I've always been sarcastic, and I've always engaged in dark humor, but this year I think I saw real bitterness in my writing, and a real loss of hope. I need to let go of that, this year more than ever before, because Schuyler is going to need a positive father as she makes some very difficult transitions. I'm going to need to be ready to fight harder than before, and to help her navigate school with a whole new crop of teachers and a whole new set of preconceived notions about what a kid like Schuyler might be capable of.
I need to find my positive center and hold onto it. If you want to call that a New Year's resolution, then fine. That works for me. I will clean my emotional house. I will let go of the things in my life that have been bumming me out, I will simplify my existence, and I will face my failures unblinkingly and then let them fall behind me. I found a quote from a poem by Antonio Machado that I love, a few lines that speak to what I need to do:
"Last night as I was sleeping, I dreamt -- marvelous error! -- that I had a beehive here inside my heart. And the golden bees were making white combs and sweet honey from my old failures."
More than anything else, 2011 is going to be about working to integrate Schuyler into this grey, mean, dumb world. But I need to make sure that I never lose sight of my greater challenge, which is to make this world, by force if necessary, a little bigger and a little more accommodating to her, too. Because I envision a universe that has a place for Schuyler, a world where she can be exactly who she is, and her fellow earthlings will watch her with wonder, and they will say "Holy fuck, that is an extraordinary person."
I like that world. It's the one I live in every day, and I need to remember how lucky I am to do so.