Sokath, his eyes uncovered!

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Story from Crow’s IEP last week:

Crow filled out an All About Me worksheet the first week of school, with help from his new aide. It’s the usual stuff, I’m blah years old and I like to blah and here’s a drawing of my family and of course,

Question: When I grow up, I want to be…
Crow: Six

His aide asked the teacher if she should try to drill down and get a more typical answer. The teacher said, no, Six means something to him and it’s not a wrong answer just because we don’t know what it means.

If you’re not grasping how huge this is, she’s letting Crow speak in Crow’s number-language and realizing that her inability to understand him doesn’t make him wrong. I explained the number language to her when we met last Spring, and included a recap on my User’s Guide to Crow back-to-school intro flyer, so she knew she was seeing a language barrier and not a lack of effort or ability.

Huge. Simply huge.

I suspect that somewhere there’s a picture of a person doing a cool job while wearing the number 6, and that was the picture in Crow’s head, and the most important thing about that picture in his head is the number, so Six is how you’d talk about it. We’ll figure it out later.

One of the shorthands I use for my life is, it’s Darmok all the time around here.

I’m referring to the Star Trek:TNG episode Darmok (I mean, OBVIOUSLY). It’s the one where they meet the aliens who only speak in metaphor, and they can’t communicate until they have a shared foundation of stories.

If you haven’t seen it, or haven’t seen it since 1991, here’s a nice edit with a distillation of the communication theme from the episode. The joy on the face of the alien in the last scene in this edit, when Picard has FINALLY understood him for the first time makes me tear up a little. I know that look.

In my experience, communication is a matter of patience, imagination. I would like to believe that these are qualities that we have in sufficient measure. — Capt. Picard

Yeah, I just quoted Picard in a blog post.

School!

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Third Grade!

Third Grade!


Crow started third grade yesterday! He was nervous but brave.

He is at our neighborhood school this year, so we can walk to school for the first time. I don’t miss driving him to school, and I especially don’t miss parking there. We’ve been all over the district since preschool. Doobie and I walk with him and then we get to walk home together which is a nice way to start the day before I drive off to work.

His class is grades 3-5. If this placement goes well he could stay with this team until it’s time to leave for middle school. Crow’s school experience has been very good overall (if we pretend Kindergarten never happened, and we do).

Crow has been really into counting things with his hand-clicker lately. One day last week he and Doobie’s mom counted up every Cars toy and book he owns. The number was over 500.

This is why John Lasseter has a really big house.

This is why John Lasseter from Pixar has a really big house.

He has been collecting them for years. For a long time he just enjoyed lining the cars up or crashing them into each other, but gradually he moved on to re-enacting scenes from the movie, then to doing his own story mash-ups. The other night the toys from Planes were re-enacting an episode of Thomas, which was pretty far through the looking glass. It was a Percy-centric episode, though. I have strong feelings about several trains, but I really have it in for Percy. #OccupySodor

I’m sure there’s a Buzzfeed quiz about this. Which Thomas Character Makes You Stabby? The answer may surprise you!

Suit Up

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I still haven’t shaken off that jerky encounter from yesterday.

I want to expand on what I said about not wanting to let things like this bother me, because if you don’t live in my awesome world, you may think that people being dicks because my kid stands out is something that happens rarely.

Ha ha ha ha ha.

At the BlogHer Special Needs session, Shannon from Squidilicious said that we need to learn to wear an emotional flak jacket in public. I tend to think of mine as more like body armor.

Last year, I helped chaperone Crow’s class on a field trip to the children’s museum. His sweet young teacher was shocked by some of the rude comments she got from other parents at the museum. She asked me if that happens a lot, and I started to say that it doesn’t but then I realized that it happens all the time but I barely register it at this point. The looks, the little comments made to someone else but loud enough for me to hear, the disapproving head-shakes – they still happen, I’m just not thinking about it.

I think the part of my brain whose job is to generate fucks to give about random people’s approval of my child/parenting has mostly shut down from lack of use.

this is me

this is me

Mostly.

And then something like yesterday happens, where it’s clear that there are people who don’t think I should be out in public with my kid, that we haven’t passed some kind of ‘you must be at least this normal to ride’ bar. And on the one hand, fuck those people gently with a chainsaw, but on the other (the hand without a chainsaw), I’m still capable of feeling shame when someone is trying to make me feel ashamed. Even when they have exactly zero legit reasons for doing so and we have exactly a millionty (¬©Crow) rights to be exactly where we are, doing exactly what we are doing. It still hurts, even if the hurt morphs into anger pretty quickly.

Train!

Gratuitous Pic of Crow on a Train

I said it’s body armor, I didn’t say it’s always effective. It sucks that just being out in public while disabled has to feel like so much disobedience and rebellion. It’s energy I’d rather be putting into other things, but that’s not an option. This is my life now. It’s why breaks like Doobie going to High Sierra Music Festival and me going away to drunkenly craft with my friends in hotel rooms matter so much – it’s a chance to slip the armor off entirely for a while.

Maybe one of my new responses should be to (perkily) ask people who are sharing their wisdom with me if they are familiar with Wheaton’s Law, and if they aren’t, just say, “It’s simple. Don’t Be A Dick.” with a big smile and turn away.

Get to know me: my kid

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Crow is 7, awesome, and rather intensely autistic. He loves Thomas, Pixar, Disneyland, Fruit Ninja, construction equipment, and numbers, and has a smile that lights up the world.

It took a long time for him to speak, and now he’s quite verbal but not really conversational. Language is hard for him, so he uses a lot of scripts and mimicry right now. I’ll take it, we generally manage to communicate pretty well even if no one else would understand it.

YouTube is high on the list of Crow’s favorite things, and if you’ve ever wondered who is watching all those videos of people showing off their entire Thomas or Cars collection – that’s my kid. He loves toy collection videos, and I’m pretty sure that’s why he frequently adds, “Thanks for watching!” when he says goodbye. He also watches videos of kids playing with toys he owns, and I see him mimicking them later with his own toys. It’s like his own little lab where he can access test subjects at will. Crow also loves watching counting/countdown videos, and he recently veered into the thrilling category of Geriatric Exercise Videos – think ‘woman in a cat sweatshirt lifting her arms over her head 100 times and counting aloud.’ Thanks, Internet!*

Numbers are a big part of his brain-schema – I believe he sees numbers before anything else, and so rather than seeing a whole thing or experience, he remembers the numbers. When he was younger and had very little language, we once spent a frustrating couple of days of him pointing at the stack of DVDs and demanding “25! 25! 25!” I felt so helpless because I could not figure out what 25 was, and clearly it was entirely obvious to him. When I finally gave him all the DVDs to sort through, he handed me a Sesame Street video with a tiny 25th anniversary logo on the cover. Duh. 25. The real breakthrough for me was when he summed up an exciting day as, “20, 11:35, 8, 156” and repeated the numbers several times. We had gone to the Mercado 20 theaters at 11:35 to see a movie in theater #8, and then we’d gone to In-n-Out where our order number was 156. Once I saw that, I knew to start noticing important numbers so I could respond when he brought them up later, and his joy at being understood was amazing. He doesn’t do this much now that he can communicate more easily, but we still point out our order numbers and room numbers and addresses, and I know he’s filing them away. If you ask him what his current high score is in Fruit Ninja on a given device, he will tell you immediately, and be delighted that you asked. His score is higher than yours. He mostly learned from watching high-scoring YouTube videos – he’d trace their moves on his iPad and then try them out in the game. I love watching him figure out the world.

Crow in the shower display

Going to Lowe’s with Crow takes longer than going on my own, but it’s much more fun. He had to try out all the shower displays, including this one which looks like a Star Trek transporter.

*YouTube Pro Tip: if you think you’re being clever by using The Final Countdown to score your countdown video, you’re not. It’s been done. And done. And done. Also, Crow singing The Final Countdown is kind of adorable.