Today Dar’s Alta Bates speech instructor told me that Dar needs to work on using his iPad for more communication and not just things he wants. I guess that could be seen as a good sign, as though he’s good enough with the things he wants. She says that when she presents a pen, or toy apple, or toy tiger, and says, “what is this?” Dar should be able to find it on the iPad. She suggests we start with food that we give him that he doesn’t necessarily want (Dar is great about finding iPad icons for the food he does want). She says we need to focus less on his vocal “mands,” as we call them in the business. Because his speech is so – and here she used a word I’d never heard – “persistentive.” I was like WHAT? She said it means he gets stuck on a particular utterance and won’t be moved off of it even when other utterances would be more appropriate. Wouldn’t it be nice if the word for bad speaking was easier to speak? It’s kinda like, why isn’t “phonetic” spelled phonetically?

With Dar it’s always been more than autism. It’s always also included the component of not being able to use his mouth the way other autistic kids can. He’s got apraxia or the effects of cerebral palsy or something like it.

So we can do that. We can do what the instructor suggested. We get tired of forcing things on him. Then again, we get tired whatever happens. Just him running around the house tee-tee-teeing is its own sort of drain. Autism is exhausting. It’s also persistentive. (Why not just say persistent?)

Dar has been licking things lately. He takes a toy, holds it, and licks it. If someone tells me that’s because he’s hungry, I may lose it. That would remind me of when people would tell me he wants to go potty because he’s reaching for his [redacted]. Today the speech therapist said that it’s something babies and young toddlers do. “And that’s his level.” Uh, thanks? Maybe I should be thrilled that he’s belatedly arrived at that stage?

We look for glimmers, and lately the school has had glimmers. The permanent aide that the school hired after the chaotic first month has now been with Dar for about seven weeks, and she has a terrific personality. She and I are already at the hugging stage. She stopped me at Safeway when we randomly ran into each other there, shopping at 6:00 on the evening before Thanksgiving. (How she picked me out of that thick crowd of shoppers, I’ll never know.)

Today she showed me what Dar has been working on: tracing lines, cutting, reading, matching, articulating his emotions (e.g. happy, sad, angry). She thinks he’s making progress, and I have to believe her.

Dar walks right up to kids when I enter class, and they walk right up to him. I have to think this is a 6-year-old thing; I can’t imagine 12-year-olds doing this. They seem to enjoy him even when he doesn’t say anything. Especially because he doesn’t say anything.

Hm, maybe this enjoyment could go on longer than I think?

Also, yesterday we received an email from one of Dar’s teachers:


[Dar] did a great job during reading workshop today.  He listened to a classmate read him a book and he looked at the picture of a book about water.  He earned being one of the reading champions.  🙂

Have a great evening,

[her name]

And if a picture is worth 1000 words…well, even if one is worth 200, the next two pics cover this post’s planned word count as well as warm my heart:

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