This picture shows a letter from the Mind Institute at U.C. Davis, rejecting our application for them to study and/or help Dar. I have, or had, this fantasy that maybe Dar can somehow, someday be useful to society…maybe scientists could study his brain and find a way to prevent the next kid with severe autism. (Do NOT bother to respond by equating autism to a superpower or handedness or eye/hair color. You live with Dar for a week, you spend all those sleepless nights shushing his screaming, and then you tell me he is not profoundly impaired. This isn’t a conversation about recognizing everyone, this is about easing suffering.)
Anyway, another day, another rejection. I’m beginning to question Dar’s neurologist’s expressed wisdom that we should try to find Dar a psychologist or a psychiatrist who could maybe talk to Dar. I said, great, how do we do that? His response was to open up Psychology Today’s website on his computer. I said, don’t I need your, and don’t you have some, referral? He’s all no, psychiatrists don’t need referrals, you just call them up.
He made it sound so easy. But when you call or email a professional and ask them for something they have never heard of and don’t know how to deal with, you get…not a lot. You might get a referral to a referral. You mostly wait and wait and get a lot of nothing. Or a polite rejection letter like the above.
I’m just gonna say something that isn’t fun for you to read: I’m tired. I’m tired of trying to make things happen. Making things happen is hard. Altering routines and establishing new ways of doing things is hard. You know this.
If I’m neurotypical and I’m having this much trouble making changes happen, think how hard change must be for Dar!
But this goes beyond Dar. I see people recapping 2019, and I’m always open to taking stock.
The year began well enough. In a January meeting, after years of effort, we finally got the BUSD to admit that mainstreaming Dar wasn’t working. Hooray! After leaving that meeting I even recall saying words to wifey to the effect of, “hey, that makes 2019 a great year already.”
Maybe I shouldn’t have been tempting the fates? I’d love to have had a 2019 where I simply worked, looked for better work, and raised the kids. But somehow, nothing’s ever that easy. Ever since that January meeting, it’s been one crazy situation after another.
My father very unexpectedly passed in February. I was his only child, so that’s a lot to arrange.
I’m happy that Dar changed schools in April, but that was also a LOT of work. Finding the right school (did we?), meeting with everyone from both schools (everyone takes seriously their goodbyes and hellos), more IEPs…a lot.
In March, I read the new “The Uninhabitable Earth” by David Wallace-Wells, and that…was its own kind of exhausting. More and more I think I need to do more and more about our climate crisis. And maybe forget about all the other petty distractions.
In 2019, those distractions included hearing back from the National Endowment of the Arts that they did not grant me the grant (for a digital museum of 19th century populism) that I spent months of 2018 preparing. They included hearing back from the Sundance Writers’ workshop that they didn’t like the TV concept (a comedy about a hotel on the US-Mexico border) that I spent months of 2019 preparing.
Upon the release of Once Upon a Time in Hollywood, I pitched a few mainstream publications (you’ve heard of them) on my expert opinion on the film…thanks to my book Representing Rough Rebels, I’m fairly sure that I am the only person to have published a deep dive into the transition of studio lead acting requirements of the late 1960s. The good news is that I had back-and-forths with some major editors. The bad news is that I didn’t land a big site, though I love my peeps at Filmotomy for ultimately publishing it.
Something similar happened with two other pieces. One of them is my awesome #wokade drill-down, about the decade of getting woke, which I’ll just self-publish to Medium in about a month. After “OK Boomer” became a thing, after NPR and major sites did special pieces on it, I thought, hey, they’re talking to nobodies, what about me? I was the first person to say “OK Boomer”…28 years ago. I didn’t coin the term, but I was the first person of a younger-than-boomer generation to frontally confront the boomers in the mainstream media (Newsweek). That new pitch also went nowhere. Perhaps that’s partly because in an era when the internet proves or doesn’t prove any claim, my byline isn’t even in Newsweek’s official link anymore. I have receipts, but…erasure is exhausting.
In other words, either in spite or because of Dar, I’m still taking big swings at the plate instead of settling for bunts and base hits. I would be happy with my neurotypical child growing up to live a life of taking big swings. I think it’s good. But…big swings tire you out.
I also blogged, applied to a bunch of jobs, heard a lot of silences, heard a few rejections, and…lo and behold, I got one of the jobs and maybe, almost, one more, which I’m supposed to learn about tomorrow. So yeah, sometimes things pay off.
All things considered, it’s been a good year and an even better decade (which I’ll cover at some other point). But I am so, so tired of trying to make new things happen.
At this point I just want to get away. More than anything else…well, if I really got to choose…I’d like to go to Hawaii with wifey and kids.
Good thing we have tickets to Maui and leave tomorrow. Aloha!