The blog began one year ago tomorrow. I’m taking a little look back. Happy New Year!
January 8: 20 things
I made a list. I brought it to his pediatrician, then to the child development specialist he sent me to, then to a doctor in Walnut Creek that she sent me to. To this day I’m sure the list made a difference. I would show it to a professional and they would say “uh-huh, uh-huh, uh-huh.” They would never say “Jesus Mother Mary of Christ our Lord Cthulhu.” But I read it in their subtleties, I read it in their subtitles.
The list, then:
20 THINGS THAT DAR NEVER DOES (AND ALMOST NEVER HAS):
4. Indicating in any way
5. Responding (including to his name)
6. Demonstrating receptive language (e.g. “where is…?”)
7. Communicating needs (with grunts/yelps/gestures)
8. Looking at things we point at
9. Handing us things
10. Bringing us things (from across the room)
11. Doing tasks on command (e.g. “get this,” “come here”)
13. Reacting to loud danger sounds
14. Socializing, noticing kids his age
15. Eating (almost anything)
16. Dancing, or moving with rhythm, or preferring any kind of music
18. Riding a scooter (where he’d sit and push with legs)
19. Pushing around (baby) stroller or wheeled things
20. Holding up a bottle or sippy cup
Around his second birthday, the Walnut Creek doctor spent about three hours with him; at the end of it, she diagnosed Dar with autism.
February 12: Kubler-Smith-Ross-Rowsey
One of the wisest things I’ve read about parents of kids with autism is that we’re going through an extended mourning period. Yes. When my mother died, there was a finality to it, even if I did keep dreaming her alive and waking up feeling that I’d lost her again. But the DarMar situation goes on and on. Almost every day we face up to no surprises. And every day that happens, that’s grief.
The longer this blog goes on, the more it feels like I enjoy playing victim. Let me make something clear: I don’t.
Just to swing this over to the world of comedy, I saw Jerry Seinfeld on one of his webisodes telling Michael Richards he needs to let go of the day he shouted the “n-word.” If Richards couldn’t let it go, Seinfeld said, “That’s on you.” Jerry’s right. But how do you let go of your autistic child? How do you stop trying?
March 11: When You Wish Upon a Star
I totally understand the hurt and conflicted feelings of some of my fellow parents of children with disabilities. I respect their truths, and I absolutely defend their right to say that Suskind is minimizing certain aspects, as well as their right to ignore him entirely. But in the case of autism, in my humble opinion, I believe we’re still in the “exposure-at-all-costs” phase. In the 1995 film The Celluloid Closet, about gays in film history, there’s disagreement over the stereotypical swishing, mincing “sissy” figure that classical Hollywood used as a standard foil: many consider such caricatures the equivalent of Stepin Fetchit coon-figures. No less than Harvey Fierstein replies on camera: “I like the sissy.” Because as a young gay man struggling for role models, he liked watching for them. Any slight visibility of a kindred spirit made him feel less alone. Fierstein says, “you know, exposure at all costs.”
Despite the unprecedented fact that 1 in 54 boys are now diagnosed (as Suskind mentions), there is still a real stigma. People still instinctively recoil from the obviously disabled; “retard” and “retarded” is still a very common insult on playgrounds and elsewhere. (“This article’s retarded!”) I feel Suskind was careful not to over-generalize, but even if he hadn’t been, I think it was generous of him to open such a window into his life. I like his story.
April 23: Jump (for my love)
Naoki’s book is like a message in a bottle, a letter from prison, smoke signals from a frontier outpost, beep signals from outer space. It’s talking to us from the great beyond of one of the planets in the Autism Galaxy, a place where every inhabitant is stuck alone on their own world.
Reading Naoki, I “heard” him the way I hear voice-over in films, with that slight extra reverb and echo-chamber effect. But while films and shows tend not to trust actual kids to tell kids’ stories (e.g. Stand By Meand The Wonder Years are told in voice-over by adults pretending to be the lead kid), The Reason I Jump blows the lid off that convention as Naoki demonstrates an extraordinary degree of maturity, poise, love for humanity, and vulnerability. To think about the courage and work and persistence that it must have taken for him to write this…it’s staggering.
May 14: Happy Unmothers Day
…“He’s been this way for a while,” I say. All his life, I think. Still taking care of numero dos at the same time. Wifey is in the changing room or something. Which is good. I want her to rest. God knows she does everything for us every other day (uh, including that day).
L.A. says, “Wow. That’s tough.”
“Has to happen to someone,” I answer.
She says, “That’s a nice thing to say, but that’s still very difficult.”
Knowing Dar is safely sitting on the hot tub steps, I keep my focus on #2 while I try to say wistfully, “Wouldn’t wish it on my worst enemy.”
L.A. says, “My cousin’s girl was a Downs baby.” Right. Here it comes. Everyone knows someone. And sure, I’d probably be saying the same thing in their situation. But I’m in my situation, and theirs isn’t helping mine.
“How’s she doing?” I try to say politely.
“A lot better. She’s 17 now and can do a lot of things. But it’s not easy. It’s never been easy.”
Reminds me of my favorite exchange from Lost, a show which wifey is currently watching for the first time. Locke: “Why is it so difficult for you to believe…?” Jack: “Why is it so easy for you?” Locke: “It’s never been easy!”
June 1: If We Knew
The truth about non-public schools is that many of them don’t take special-needs kids as young as Dar; in many cases, we’d have to wait until 1st grade or so. Nobody tells you the real reason for this, but in doing all our research, the image was coming through the blotter: most parents at least try their public school district for a year or so, partly because of money. If you want your district to pay for your kid in non-public schools, you better be able to make the case that the district already tried with your kid and failed. Apparently, our 18 months with the BUSD thus far don’t really count, because that’s only at the pre-school level. Let him try to swim with the big fish, and if he stumbles they’ll consider paying for him to swim with another school. Lisa also says that she doesn’t know where the BUSD has paid for a kid as young as Dar to go elsewhere, except in a couple of cases where the kid was extremely violent. That isn’t Dar. On the other hand, Lisa cheerfully mentions that she’s breaking the mold with Darwin to have him skip Transitional Kindergarten, and that his 1-on-1 aide is somewhat unusual. He’s got a pretty good Action Plan and a work station…oh God. I’ll say it again: if we knew that any particular strategy was going to make him proactively talk, we’d sign up for it in a heartbeat. If we knew, I’d quit working and just work on Dar full time. Not knowing is the source of pain.
Remember how the baby books tell you that those first three years of life are crucial? (If you’re male, just ignore that last sentence; I know you didn’t read the baby books.) I don’t know that the years have stopped feeling crucial. Maybe that’s true for everyone, but maybe it’s different when your 4-year-old has less speech than your 2-year-old. So the idea of “losing a year” is still a very difficult one for wifey and I to wrestle.
Looking back on Benshoff and Griffin’s four types, I’m struck by the typical ages and stages: the Sweet Innocents are children or young women, the Noble Warriors and Tragic Victims are young men, and the Obsessive Avengers are older men. And the 1990s Hamlets (including Daniel Day-Lewis in My Left Foot (1989), Jodie Foster in Nell (1994), and everyone else that Robert Downey Jr. meant when he told Ben Stiller inTropic Thunder (2008) “you never go full retard”), arriving in contrast to a decade of Jasons and Freddies, looked remarkably nuanced just by sitting there not chopping people to bits. And then I think: maybe little Dar is just going to go through each stage at each age. Maybe he won’t, but I like having this “blueprint” of types as a thing to work against, to guard against. I don’t need Dar to be a supporting character in anyone else’s journey – not even mine. I want him to become a person beyond typage.
I don’t know if the anti-recovery crowd is more numerous or just more vocal – kinda like all those internet-vocal fanboy lovers of a film like Sin City who couldn’t get the sequel to earn $7 million on its opening weekend. But I have to say that as the parent of a kid who I feel needs help, who I feel needs some kind of change, I feel like an “uncool kid” compared to the “cool kids” in the autism community being so shrill about “optimal outcomes” and the like. It really makes me want to unplug; my perspective doesn’t feel welcome to them, so why should I offer it?
I mean, I get it, it’s their truth, and they probably have a lot of reasons to be defensive against some snake-oil salesmen who judge their kids in terms of better and worse. But…the irony for me is that they’re yelling REMEMBER NUANCE and they’re so doctrinaire! We all have friends who, when the NYT does 3000 words on Israel that include criticism of Netanyahu’s policies, they have this “they’re anti-Semitic” rant all ready to go. Likewise if the subject of pornography comes up, there’s this Catherine MacKinnon-inspired “all porn is basically rape” rant ready to happen. But at least in those cases, the absolutist position has a certain logical consistency – they see the defense of Jews/women in Manichean terms. Here, they have this pedantic rant all set to go that’s like “look, the language of therapy doesn’t cover my child” – just seems strange to be so dogmatic when you’re saying people shouldn’t be so dogmatic.
September 17: Starting Kindergarten
Why so pessimistic, you ask? Dar has already been semi-regularly kicked out of his classroom. Well, that’s not how they put it to me. I was on them – I am always on them – about his programs. As far as I could tell, they were just letting him be with the other kids while the aide kept him from walking away or massively freaking out. As I had told them, that isn’t going to maintain and grow the skills he has. So I was like, when are you going to do the programs that he has at home – quizzing him on animal noises, body parts, et cetera? (As detailed in a previous post on this blog.) They cheerfully said, “We just had a big meeting about this.” (I wasn’t invited.) “Now we have stations set up for him around the school.” To me this smacks of the “Six Californias” plan – a solution with very little relation to the problems. Why would it help him to move him around? I think the change helps the teacher and the class, and on some level, I don’t blame them. I have been told that Dar has been freaking out in class for absolutely no reason – just melting down and screaming on the floor for minutes on end, like he’s suddenly trapped in a heated oven. Yes, I can see how that would stop class; typical 5-year-olds don’t behave that way, and they do stop and stare at someone who does. I also see that I warned the teachers and admins that that would happen.
October 8: Annual IEP: October 14
During the placement discussion, Lauren and Elaine spend a long time explaining the horror of Special Day Classes. Finally I have to stop them. As the only man in a room of ten women (it’s always like that at IEP time), I almost never raise my voice, but now I do: “We didn’t ask you about Special Day Classes, we asked you to justify BUSD’s inclusion-only policy. It’s like you’re Democrats whose whole shpiel is that Republicans are terrible. Well I agree that Republicans are terrible, but I also don’t think in binary terms of one-or-the-other. I might be thinking of some kind of third or fourth party. I might be thinking of home-schooling Dar. I might be thinking of hiring someone.” They were apologetic.
November 19: Dar’s Weekly Speech Therapy
So what do they do? She holds up cards and asks him to distinguish between the pictured items. Sometimes he connects quite well, sometimes we can’t tell if it’s a coincidence, sometimes he fails, sometimes he screams. If it’s going well, DeeAnn may put the cards on a table…Dar’s better at choosing between two cards held up in two hands than he is between two cards on a surface. She asks things like “who is this?” “where is that?” and tries to tease out answers…succeeding perhaps 2 out of 10 times.
DeeAnn demands that Dar “mand” for everything – in our world, that means he has to intelligibly ask for what he wants. Typically, Dar won’t proactively ask for anything – though he’s getting better at saying “all done” without prompting. (Mixed blessing, that.) So DeeAnn presents choices – balls or dolls, bubbles or food (fake food), that sort of thing. She asks him about the photos she has on the wall. He will stim with some item he’s brought in (say, an Iron Man doll), and she’ll turn that into an exercise…if he complies. She keeps a clipboard where she check-ticks expressive utterances and receptive understandings. Some days it fills up; some days it doesn’t. She ends by asking him if he wants a sticker; he never does. If she puts it on him, he pushes it off like an unwanted spider.
December 17: “I Had Autism” – one of my students
I always have a few terrific contributing conversationalists in each class, and this class featured such a student, who I’ll call Chris, and when the discussion steered to autism, Chris raised his hand politely, and when I called on him, Chris said “I had autism.”
Needle-scratch that trailer. This is the moment in the movie theater where you hear the gasps, the big twist in a film like The Usual Suspects, The Sixth Sense, or Fight Club. This is the big comeuppance for audience and lead character, who suddenly must rethink everything they thought they knew. Chris…had autism? And he’s just telling the class about it this way? And on the surface, he’s absolutely indistinguishable from any of the best students I’ve ever had?