One year ago, my son started at his new school. This marked a major turning-point in our lives—the end of an exhausting struggle with the local district and state that spanned years and, at times, pushed all of us to the brink of despair. Prior to this, the Kinglet’s situation was so dire, his mental health so precarious, that we’d had him homebound with (largely ineffective) tutors and therapists for most of fifth grade and part of fourth. Even after we successfully argued with the DOE for alternative schooling, it still took a quarter year to find a suitable placement—none of the special ed schools that we liked wanted to take a risk on a volatile (that is to say, “challenging”) child, and none of the ones that would take him inspired any confidence (most were just a step up from juvenile prison).
It was in late April of 2017 that we found a match with a small Philadelphia private school that focuses on higher-functioning ASD kids. The transition was not easy, but philosophical and pedagogical differences between this school and our home public school district were manifold. Over the past year, the Kinglet has made remarkable progress, not just in catching up with the schooling that he missed being homebound, but also with the life skills he so desperately needed but wasn’t being taught. While we’re still not able to fully relax (will we ever?), we’ve never held our breath this long without a major setback, a devastating crisis. Our latest IEP meeting was a (comparative) breeze—the changes are minimal, agreeable, reasonable. In short, he’s doing really, really well.
MEANWHILE, our daughter started part-time preschool in the Fall—an integrated special ed preschool, actually, in
the same district that wasn’t up to educating our son. So that’s fun. Compared to the Kinglet, the Empress’ developmental delay (mostly in speech) is relatively mild. In fact, it’s about as mild as it could get while still qualifying for spec ed intervention—although the nuances of “mild” and what that means in terms of services has already become a subject of debate between her parents and her team. Silver lining, having been through all the fires with the Kinglet we’re neither ignorant of our options nor shy about using them, so the Empress has already had a top-notch third-party evaluation for speech & language, which we are about to bring to the IEP next month. Otherwise, the Empress is blossoming into a hysterically funny and sassy little pixie who knows herself and misses nothing and lights up our world like the miracle she is.
As for me… having both kids relatively stable and out of the house at least *some* of the time is lovely, although it’s not as revolutionary to my life as I’d imagined it would be. I had planned to use this time to work on a novel, and I tried, but by December of last year it became clear that I’m blocked. I’ve been creative in other ways, most notably with my online lit journal, which is very satisfying, but producing work of my own has been incredibly challenging. At times even composing an email was beyond me. I’ve made progress—some blurbs, some poems. But no fiction. Given that the fellowship I won this year is for fiction, this is especially demoralizing.
I have spent a lot of time thinking about this block. I spent all of 2018 thinking about it, actually, up until my health took a nosedive in late March/early April. It was actually a relief to think about something else (how sick I was), except then I got so sick I could barely hold my head up, and that scared the shit out of me. Not being able to work, like, at all, not just writing but all the daily things I HAVE to do, like care for my children…
Although my health issues are not resolved yet I am doing much better now. I’ve had some time to catch up with the minutia, and even a few quiet days to consider where I am, and what’s next. Which is what this post is really all about.
I think the long creative block was (is?) recovery time. Enforced by who, I don’t know (and I’d like to have a word with someone about it, yes I would). I didn’t *want* downtime, but the truth is I wasn’t well. Things got better with the Kinglet over a very short amount of time, but the trauma that we—that I—went through before that was intense and extensive and, in all seriousness, could have killed me. That isn’t something you just shrug off, apparently. Why I couldn’t have worked through it with writing, IDK, but anyway. That’s how it went down.
Now I think maybe the sickness was an extension of that. If we’re going to look for existential reasons for things, maybe the creative downtime wasn’t enough—maybe thinking about it obsessively, even thinking about it in terms of self-care—just wore me down until my body couldn’t take it.
Or maybe it’s just a shitty fucking coincidence. Or maybe I’m cursed.
Either way, IDK if I’m out of the woods NOW, creatively or physically. I know I feel different, but I don’t know what that means. I don’t know what to do next. I don’t know my purpose, or how best to eke meaning out of whatever life I have left. I don’t know why the clock always seems to read 11:11 when I look up. I’m trying to work all of that out.
I’m trying. That’s pretty much it.