So we had our first actual visit from the ABA provider yesterday. They've come a few times to talk, get a plan/paperwork started, etc. But yesterday was three hours of working with Zadie. For the record, two people came yesterday, but it will usually be only one.
It went sort of like this. They talked to her and played with her. Then they made a schedule of things to do, which Zadie helped with. And they sort of negotiated which chores she would do, as completing some chores when asked is one of her goals. And then they started with homework. She was squirrelly and fidgety and kept making excuses to get up, exactly as she usually does. And they just would remind her to come and sit down, exactly as I usually do. The difference is that I am often distracted -- with baby, with my own chores, whatever. Which means she gets away with it more often. They weren't letting her, and it was going okay.
Then they asked her to brush her hair (doing independent self-grooming kind of stuff is one of our goals). She did, even putting it in a ponytail, and got a lot of praise.
While Lochlan was down for his nap, she was telling them about his favorite stuffed toy. She saw it and wanted to give it to him. I said no, because he was already asleep. She went on and on about how she could sneak, how she was going to do it without my permission, how it would be FINE, don't worry, she won't wake him up! Finally, she just took off for the bedroom, ran in (the tech tried to stop her but didn't get there in time) and dropped the toy on Lochlan's face, waking him up).
Then her little friend came over for a while. (I asked if it was okay.) They all played together for a while, and that went fine. Then it was time for the friend to go home (after about 20 minutes), and stuff started going to hell. Z never wants her friend to go. I said I would walk the girl home, but Z insisted. We all said no, but she ran out the door. We knew they were both holding the end of a long ribbon, but we didn't know Z had actually
tied it to the girl's wrist. So there was arguing, and there was yanking, and the knot was getting tighter and the technician was trying to untie it and Z sort of broke away to run across the street to take the girl home, and she didn't look to see whether a car was coming. It was -- it was going at a safe speed and had time to stop, but it was uncool. It was a whole bad scene.
Anyway, we finally got her back home and it was time for a chore. She wanted to do window-washing, which I am really ambivalent about her doing (she can't reach half of them, and we have to move furniture to clean many of them, so it's kind of a lot of work for a half-assed job). But she did that okay (even though she was sort of trampling on Lochlan at the time. They asked her to stop spraying and dry the windows, and she kept spraying (she really, really loves spraying). But they got her to stop and clean up the fluid.
Then they played some more. I think they looked at her bike, and they made a fort in her room. I was in the kitchen (though I peeked in occasionally). When that allotted time was up and they started to take down the fort, she screamed. Thinking she'd been hurt, I rushed in, but she was just upset. Several times already, the tech had assured me that it was okay and I could back off, so I did. It was hard, though, man! Your kid is wailing and you're like "welp, back to the organizing, I guess!" She seemed to get over it, but then they informed her it was time to do the other chore, wiping off the table.
She refused. She wanted to build more forts. They said it was time to clean the table first. She grabbed a toy. They gently took it from her. She grabbed a weird piece of cardboard she's bene playing with. They took it. Repeat the she-grabbed-they-took sequence several times until she's livid. She finally comes out of her room with her horse-on-a-stick (the operative part there being the big fucking stick) and comes after the tech with it. I had been trying to butt out, but I jumped up and yelled her name. The tech turned and assured me it was okay. She got it from her as well.
Then they decided to make the fort (I will explain this more later, since I know it seems weird). They made a fort, they had some fun, they talked and played and had a good time. Then they asked her to clean the table and she did.
Then she ran across the street without asking to the neighbor girl's house, so they had me walk her back home, ask, and then walk her over again.
And that was mostly it.
You can probably guess that I have a LOT of thoughts and feelings and reflections about this experience.
In no particular order: I hardly ever tell anyone about all the yelling and refusing and hitting and baby-waking and screaming and messes and I-hate-you and whatnot. It feels a little disloyal, for one. For another thing, most people don't hear that and think, "how difficult dealing with this brain must be for Zadie," but rather "you guys must be really shitty parents. She needs an ass-whooping." And I just don't really want to invite that all the time. So it feels weird even to detail it here.
Second, I actually talked with them about the fort/table issue. I mean, parenting advice would vary, but would mostly be along the lines of "follow through -- if you said no fort until after table, then stick to it or you're teaching her she can get what she wants by being naughty." And let me be very real here: that kind of bullshit would have pissed me off, she'd have earned herself a time-out in her room, and I'd have been in NO GODDAMN MOOD to play with her in a fort right about then anyway. But the tech explained that a lot of kids aren't as strong-willed as Z, and she could see she had hit a wall of non-compliance and needed to get Z back on her side. Playing for a little while brought her around. And I mean... the table got clean, you know? What I'm struggling with a little is the idea that just playing with the fort for a while really wouldn't have been instinctual or seemed like common sense for me. And that's kind of hard for me, because I've always wanted kids, always thought that my maternal instincts would be good, always assumed I'd be naturally a good mom. And I'm not saying this makes me not a good mom, but I am saying we've spent like six years arguing about cleaning the fucking table, having big fights, sending her off to isolation, and then fighting about isolation, when I could have
draped a goddamn blanket over the edge of the couch.
Also, it is so, so hard to stand back when your kid is attacking a friendly near-stranger in your home. I hope you never have to do that. It was fucking awful.
Okay, also, one of the things they're working on is getting her to not interrupt adult conversation. And we have really, really failed at that. But the tech -- for her privacy, let's call her Amber -- is like a ROCK STAR at it. But it also looks super hard. What she does is first, completely ignores her when she interrupts. 100% of the time. So typically it might sound like, "So after lunch I went to the-" "MOM. MOM. MOM. MOOOOOOM! MOOOM LISTEN!" "Hang on a sec. I went to the Starb-" "MOM I'M TRYING TO TELL YOU SOMETHING!" "Okay, but I'm talking to Daddy right now. I know you want to talk. You're next, you just have to wait about thirty more seconds.""MOM I HAVE TO TELL YOU RIGHT NOW!" "GOSH, ALRIGHT, just spit it out!" "Cows are weird."
But Amber went right on chatting as if Zadie was just silent movie ghost-Zadie, even as she grew frustrated, yelled, jumped up and down and stomped. She had showed her before that if she wanted to interrupt, she needed to tap Amber on the arm. After this hissyfit got ignored (dude, I am telling you, the expression on her face didn't even change), finally Z remembered. She tapped Amber, who immediately responded, "Yes, Azadeh?"
Our
long-term goal is that she learns when and how to enter a conversation appropriately, and if she feels like interrupting, how to get our attention and wait for an appropriate time. But they kind of need to work her up to that, so for now, the tap gets an immediate response. I'm going to try this too (and I hope my primary co-caregivers will attempt it as well), but it also does not come naturally.
They are doing something similar with speaking in polite tones and using "please."
Z: "Mom, I want some tea!"
Amber: "Mom, may I have tea please?"
Z: (Exasperated) "May I have tea?"
Amber: "May I have tea, please?"
Z: "May I have tea, please?"
Amber gives me the nod, so...
Me: "Sure, let me go make some."
It makes our conversations a LOT longer. But I like that they're holding her to it. I really feel hopeful that this will make some positive headway in terms of getting spoken to more kindly. Honestly, sometimes it's like being verbally abused around here.
And now, on that topic-ish. The therapy she's getting is called ABA. Like any concerned mom, probably, I looked it up to learn what it was about before agreeing to start the therapy. And although most of what's available is positive, there are some horror stories, mostly about kids getting sort of corporal punishments for "acting out" in kind of normal autistic ways. Like, a kid who flaps his hands might have his wrist slapped or something. And the very first time I met with Amber, I asked her directly about that. She said that that sort of therapy was mostly in the past and had been phased out, but in their company, they didn't do that kind of thing at all. They focused mainly on rewards, praise, and instant gratification. And my fears do seem to have been allayed. The worst thing they did to her was take down her fort, and that wasn't even punishment, just "we're done playing, time to put away our things." In fact in many ways, she relished the devoted attention they could give her and their willingness to play. I do spend plenty of time with her and I pretend with her a lot, but I do also have to make dinner and take care of the baby and stuff. I can't give all of my attention to her all the time.
But there's also some stuff online, mainly from the community of autistic people, that asserts that any attempt to change autistic people's behavior is wrong-headed, insulting, damaging, intolerant, uh... I ran out of adjectives, but these people are super-duper mad. And although I respect that and see in some ways where they're coming from, the world is a very big place, and my kid is going to meet a lot of people, and she has actively expressed a desire to be liked and have friends, and I'm less likely to be able to address all the 2nd graders at her school and change THEM into the kind of people who are inclusive of weird shouty girls who pee themselves than I am of changing a few of Z's habits to fit in a little better.
There is also a feeling among this community that any expression that being a parent of an autistic child is difficult or burdensome or not all glitter-farting-rainbows all the time is a betrayal and we should just shut our big fat faces about it. But I am not cool with that at all. My daughter is a person whose needs and feelings deserve to be respected. But
so am I. And I am going to keep being honest about the difficulties of being a caregiver of a kid like mine. I'm not planning to whine about it, but I don't intend to sugar-coat it either. It's fucking hard as hell. I've given serious thought to taking up marijuna as a hobby. I sometimes want to just drive away.
If you know me, you know I am a patient person. I am an optimistic person. I may veer into straight-up Pollyanna territory. In fact, if you know me from outside this blog, the fact I'd even say I was too pissed to build a fort might have surprised you. I don't get pissed off easily. But I can say in all honesty that 90% of other parents who had gotten Zadie as a kid would have gone straight to the beatings, and maybe 3% would have opted for the bleach-milkshake-to-exorcise-the-demons. (Perhaps the darkest humor in 12 years of this blog. Sorry?)
In the car yesterday on our way home, where we would have that first session, I spoke to Z. "Hey, I wanted to say something. I just want you to know that I love you exactly the way you are, and I love every part of you. And I think your autism is part of you, so I love that too. And I don't want to change it. In fact, I think it's kind of cool that your brain works differently than mine. And just because we are starting this therapy doesn't mean I think there's anything wrong with you or that you have any kind of deficit, okay? I just want to help you be as happy as you can and have as smooth a ride as you can through life. This is just about adjusting some behaviors, not about changing you you are. Because you're awesome." She said she knows. And then she told me she had expressed astonishment that some other kid in her class didn't know what "deficit" meant, so she had informed him.
So I'm doing my best, man. I'm doing my best.
NB: I usually re-read and proofread, but this took a long time to write, so I'm going straight to bed. My apologies for anything wacky, word-wise.