WordPress now, I guess. I impulse purchased two years of WordPress on Black Friday, so finally I have rid myself of Squarespace and the unpredictable loss of entries I kept encountering over there.
My ex says she stopped worrying about Alex ever getting diagnosed with anything because of a realization she had that no matter what he’s going to be Alex. His personality doesn’t depend on a diagnosis. He’ll always be him. Sometimes this makes me feel better, too. But I waver.
Alex is asleep now. He spent twenty minutes yelling “Help!” whenever I walked out of the room to get me to come back, which I did for ten minutes, then I insisted I had to do dishes, which I really did tonight, and he kept yelling Help every three seconds for another five minutes and started to whimper so I made myself sit for another five minutes before going back in. He was not upset. “Help” is his current attention word, and he yells because the volume makes more sense to him as communication than words do.
We finally, at long last, after nearly a year of trying to get him back into his proper therapies, had a diagnostic appointment today, and so today, about 22 days before I change insurance again, Alex would finally officially be allowed to received a more permanent and frequent therapy, which it will be too late to actually get him started in, once his case worker is assigned and all the referrals go through and the holidays are over. I knew that already, but I kept this appointment anyway because I was hoping his diagnosis would transfer to the new insurance (back to good ole reliable Blue Cross, where ideally I’ll be able to get him into more specialized therapy than the niche Kaiser market had to offer us).
Anyway. Alex got diagnosed with autism today. Finally. It’s not like we didn’t know, but no one was saying it. We needed to have this appointment to allow anyone to say it out loud. It’s like a bad word, I guess. I get the feeling a lot of doctors and therapists have stories about the time they accidentally said “autism” about a child to an unsuspecting parent and the parent tore them a new one. Not my child, how dare you. She’s just *blank*. Insert rationalization here.
What it’s felt like to me is that I have been gaslit for a long, long time, and today finally someone told me the truth. And even then, the doctor avoided the word. She said at the beginning, “So we’re trying to establish what’s going on with Alex’s speech, and possibly looking at other causes, *turns on an awkward switch briefly* including *almost imperceptible pause* autism, *awkward switch flips off, things proceed conversationally once again*.” Then at the end: “I just need 90 seconds to two minutes to review the scores… *5 seconds later* Okay I do have a diagnosis. *awkward dial turned to max* He is diagnosed with autism.” And then the rest of the appointment she referred to it as “this diagnosis,” up until she asked me if I had any questions, and I said okay how do I even talk about it, what do I tell people, and she said sure, okay, there are three stages of autism, etc., without blinking. She could say it clinically, but about my child it was always “the diagnosis.”
I don’t know. I’ve been waiting to write about this all day because I used to think I could make sense out of things when I wrote about them. Now I just make my hand joints ache. This isn’t great writing. But fuck it, I’m out of practice, I’m going to sleep like shit anyway tonight, may as well keep going.
I’m not trying to complain about the doctor today, she was great, seriously. And as evasive as she was, she was like Robin Hood’s arrow compared to the county speech therapists who evaluated him in March, who would ask about signs of autism during his intake interview, and, getting answers that leaned toward autism (does he ever flap his arms? [yes, I guess, sometimes when he’s very excited, his arms get a little flappy] *knowing wide-eyed glances towards each other, followed by frantic writing like gossip columnists*) were, let’s say, less than forthcoming with their true thoughts.
Honestly, I feel like a ten-year-old who at Christmas begins to really ponder whether or not this Santa stuff is possible, and quickly figures out it’s probably not, and then spends two full years noticing how adults talk about Santa and how there’s all these coy little references to his nonexistence (do you believe in Santa? do you believe in Santa still?), not just during direct adult interactions but in the general atmosphere, in the culture, it’s kind of everywhere and in your face if you just look for it but if you ever ask any of these shit-eating adults whom you just heard discussing how much they’ve already spent on Christmas this year and are dreading how much more they probably will spend, despite how every present under the tree always says From Santa on it and so what’re you spending all this money on, mom, huh? but in any case she will say point blank, straight to your face, Santa Claus is real and you need to be good if you want any presents from him. Two full years of this before the kid finally turns twelve, which is the arbitrary age the parents have decided to let them in on the gag, and they not only say it, they say it like um, you really should have known it this whole time, so, that’s kind of on you.
Which, again, is not at all how the doctor today said it. That’s just always what it feels like, when you’re gaslit. What kind of a fool actually believes the alternative to the truth that nobody would say.
Getting someone to say that word to me, about my son, has been a journey of at least a year, and there were signs earlier, and we have always been more than aware of the higher rate of autism in micro-preemies. And for all that time, I had to wonder whether his gestalt language processing was or was not related, and how he can read already, and his lack of interest in building many of the normal social skills his classmates display at daycare, and how every time I go in there to pick him up, those kids with him seem to get older and more like real mini-adults who don’t know enough yet to hide their opinions and want to tell you all about what they’re thinking, while Alex’s inner wants and needs are still all too often a complete mystery to me.
What I’m trying to get at is, hearing the doctor say it, made me feel like crying. And I loathe toxic masculinity but I don’t know how to have a satisfying cry, one that lets me express emotion and leaves me feeling better afterward. If I ever do cry I almost always just feel worse for it. His mom called me immediately after I texted the news to her, and I wasn’t super ready for it, and she was at work so I didn’t want to get into it because I didn’t want to get her upset, but I couldn’t talk about it normally either. So I just, clamped it shut, turned the nozzle off, stopping talking, pretty much. I had to go anyway, I had to go look at houses with a realtor all day.
Did you know that just to go look at properties with a realtor you have to sign a waiver that says “this here is my realtor, and I agree they are my only realtor and will represent me if I like any one of these places they show me, and this agreement that they are my realtor will last six months, unless it doesn’t, since either one of us can decide we’re done with this whole deal at any time, meaning this contract has the same legal relevance as a pinkie promise”? Also in this document was all the stuff the sellers don’t have to mention, what they needn’t disclose, what’s not their problem, it’s on the buyer to figure all this shit out, including fun things like whether there’s mold, or radon, or sex offenders next door. Sure that looks like mold, and sure that basement smells like radon—somehow—and sure that definitely looks like a rape van in the driveway, but it doesn’t matter at all if the seller knows 100% that guy got caught with two 14-year-olds and a couple of brown bags of malt liquor. They don’t have to tell you. Besides, what kind of a fool would actually believe anything but the truth that no one is required to tell them?
During Alex’s evaluation, she asked about his waving, if he does it normally or if he has his hand turned backwards or if he does the little beak-thing people do in the chicken dance, and I said yeah sometimes it’s the beak thing and sometimes he will turn his hand backwards. I think the developmental milestone here is the ability to disengage your sensory functions inside your hand and to turn it into a semaphore conduction instrument, a flag or sorts, something to flap in the breeze, not a part of your body for the briefest of moments but a tool. No, Alex does not do that yet, his hand always remains a part of him. But then, at the end of the appointment, I asked him to say goodbye to the doctor, and he gave her about two seconds of the waviest wave I’ve ever seen him wave, before I saw the awareness of his hand moving almost on its own in a sort of slow creep up his arm, and he became suddenly quite aware of it again.
I had a good distracting day, full of houses to judge and dismiss as unworthy (or unaffordable). At the end of it, I got in my car to rush across town to Alex’s daycare because I was going to be about twenty minutes later than I usually pick him up (but Alex’s autism doesn’t cause him to melt down at such deviations from routine, he likes routine, he appreciates it and is comforted by it but in most cases he doesn’t seem to expect it, or count on it), and what do you know, I happened to hit a light that I knew would be a long one and my emotions said hey, if you’re ever going to feel anything about this today, now’s the time, and the Decemberists were singing that song about “I am wondering/should I be wondering? I am waiting/should I be waiting?” and I tried to sing my emotions like you see people do in the movies, where the sadness does something artful and poignant to their voice without affecting their pitch or making them falter or go off-key, but when I tried to belt out “I am hopeful/should I be hopeful?” I made it to the “should” before my voice cracked and disappeared, swallowed by the wave, the stage no one talks about in grief and that stage is fear, of the future, of the uncertainty about whether or not things will ever actually get any better or if this is now and forever the way of things, and I had time for exactly one tear in each eye to appear before the light turned green and I drove off to go pick up my son.