Dar just had an existential crisis of a week.
Every Wednesday morning, I take Dar to a private therapist for speech therapy. We’ve been doing it for five years. Last Wednesday was unprecedented. He refused to do or answer anything at all, even the most benign of questions. He was, as I say, “on freakout” for the entire first fifteen minutes. Of course we dialed back session and tried to be playful with him, but he wasn’t having anything.
We save gummi bears for this therapist, and what I mean by that is that Dar likes gummi bears but only gets to have them during his Wednesday speech therapy sessions. Generally, this is a recipe for success. Not last Wednesday. About twenty minutes into our one-hour session, breaking all precedent, this therapist canceled class.
Every single Wednesday of Dar’s 3 ½ years at Thousand Oaks, he’s been an hour late, because of this therapy session. Every single time, I have had to trudge Dar to the school office to fill out a tardy slip, which is silly, because they ought to have a routine for kids like him, but they don’t. (Furthermore, despite our best efforts, his tardies are sometimes logged as absences, which annoys the crap out of me, since Dar has never ever ever missed school.) That one day, having been discharged, I could have made it to school earlier, but I thought, well, if I take Dar to school, he’ll annoy them just as much. So we walked around the halls at Alta Bates. I let him have every water fountain and vending machine button that he wanted. After twenty minutes or so, I even got a few smiles out of him. I almost walked him back into his therapist’s, but she wasn’t so into that, so…we went to school.
Problem was, school was the same problem. They guessed he was sick. He wasn’t. We took his temperature. We checked for other signs. No sniffles, no sneezes, no coughs, nada. But constant fussing. I don’t think he did any work that day, just a lot of walking around the grounds of the school. I picked him up at 1:15 because that’s his early day.
Dar goes everywhere with a journal. The journal/notebook is a great way for parents and therapists and aides and teachers to tell each other what’s been going on. Well…that is, I thought it was a great way. Thursday morning, I wrote in it:
“This is Dar’s dad. If he fusses like he did yesterday, call me at [my cell phone number] and I’ll come and pick him up.”
Four different aides took care of Dar throughout the day, and somehow none of them read that message. Around 1:00 I got a message from the school’s special-needs coordinator that said “Dar has been fussy throughout the day, I think he may be sick, maybe you can take him home?” I think she sent the message around noon. By then it was too late; I was at work, and there was no way to get him picked up before his normal release time of 2:00. At pick-up, I was told that the aides weren’t looking at the journal (and yet, the journal is where they dutifully record all his trips to the potty, which is at least once an hour), but instead communicate their concerns to the special-needs coordinator. I imagined a situation where they’re talking to her, waiting for her to do something, she’s emailing me but doesn’t have my phone number…sigh. All the turnover at Dar’s school doesn’t help. Last year’s special-needs coordinator would have known to text me.
Friday we were willing to keep Dar home with us all day. Even though both wifey and I had and have various deadlines, and even though Dar isn’t technically sick, we decided to give his aides a break. Well, except for a tiny little problem. We had a previously scheduled appointment…at the school, to discuss Dar’s new Behavior Implementation Plan. Weeks before, this had been scheduled at 8:30am. If we had any kind of nearby grandparent, we would have left Dar with her/him for an hour. Not having that, wifey and I had to bring him to school while we attended this meeting in the office next door. Based on the previous two days of despairing journal entries, I told his 8-to-10 aide that this was temporary, because of the meeting.
The meeting went fine. Their new behavior plan simply puts into writing much of what they were already doing. I like it. It atomizes his day. I will probably discuss it further on this blog on a future date.
Unofficially, I have been led to believe that the Behavior Implementation Plan is a necessary, if not sufficient, step on the way to Dar’s district approving Dar’s transfer to a less public school. If so, I can only wonder why this step wasn’t taken earlier. Three years ago, Dar’s first kindergarten teacher (he’s had two) said to us in an IEP, “I ask myself why Dar’s noises bother me so much!”
It should have been all hands on deck ever since. Maybe it is now. Maybe not. When I ask, they say they’re doing all they can. Until the next year when I learn there was more they could have been doing.
Anyway, the Friday morning meeting went fine. We had to fill out a form to take Dar home sick. Which is silly, partly because he wasn’t and isn’t sick. But he clearly wasn’t getting anything done at school other than wandering the halls, so…
Dar had a weekend. It was as “normal” as any of our weekends ever are. Christmas shopping while still trying to convince Dar’s brother that Santa is real. Dog walks. Impromptu trip to Lawrence Hall of Science. Dar tee-tee-tee-ing all over the Lawrence Hall. No big whoop. Certainly he was never sick. Certainly he seemed to sleep through every night.
Then I took him to school on Monday. At 8:00, I dropped him off and got in a car to go to a studio to work on my latest movie. The deadline for it is this Thursday.
At 8:20, while on Highway 80, I get a phone call.
It’s the school principal. We’ve been going to meetings together for three and a half years, but this is the first time I’ve ever received a phone call from her. I didn’t know she had my number. (Yes, I’ve written it on about a bazillion forms.)
She says, “Dar is really screamy today, do you think he’s sick?”
“We checked him again this morning. No fever, no signs of sickness. Have you checked him?”
“Same. But, uh…maybe you can do something?”
She wanted me to pick him up? “The thing is, this happened last week. And even though he wasn’t sick, we took him out of school on Friday. He’s had most of three days to get over it, whatever it is.”
“But maybe he hasn’t gotten over it?”
“But maybe…if we take him out again, that signals to him that he can cry his way out of any work?”
“I see what you mean.” I know the aides and the special-needs coordinator have come to the principal for help. I know they don’t do that lightly. But I also know that in a much larger sense, THIS WAS THE DISTRICT’S IDEA. We never said immersion would work. The district insisted.
I reminded Jen of all this. I said, “If he can’t be productive at our school now, maybe he can’t ever?”
“I hope that’s not true.” I actually love Jen. She’s a very wonderful person with a very difficult job. Maybe immersion does work for some autistic kids. But it doesn’t count as “working” for Dar if he’s screaming and walking around the halls at most times. And it also doesn’t count as “working” if I have to keep him home for two straight school days when he’s not actually sick.
“I’m on Highway 80 now, going to work. Do you want me to turn around?”
“…No. Don’t do that.”
“I’m picking up Dar early anyway, at 12:30.”
“See you then.”
I did pick up Dar early. We went to Children’s Hospital in Oakland to see about his sleep. Naturally, when we made the appointment, we were barely getting any sleep. Nowadays Dar is sleeping better.
But still, there are problems with sleep, so…I dutifully filled out many, many forms. I answered questions about how many weeks early he was born. Now that he’s 8, that seems like such a silly line of inquiry. Especially when I’m trying to keep Dar away from all the sinks in the doctor’s offices, and I’m failing, and the nurses are running over to put towels on the floors near the sink.
I came there for drugs you can’t get over the counter. Instead, I got advice. For example, they recommended iron-fortified cereal. I asked, like what? Special K? Corn Flakes? They told me to check the labels. The next day in the supermarket, I did. Nothing. I googled it. Nothing. That’s okay, I got him some “100% Iron” in the form of Multi-Grain Cheerios.
But back to the doctor’s appointment. Actually, I liked most of their advice. Since he falls asleep consistently with the living-room TV, they recommended putting a TV in his room. We never even thought of that. We have let him sleep with an iPad, which has videos, but…he tends to press the buttons indiscriminately, and often ruin the videos. We may well leave a muted TV in his room that he can’t touch. I asked about the blue light, and the doctor said that’s not really a concern.
Anyone have an old 80s TV you don’t want?
Bottom line, this last week has felt like an existential crisis for Dar. As I write this, we have just come back from his weekly speech therapy. It went much better this week, thank you. Based on the journal, school seems mildly better this week. I mean, sometimes. Maybe.
So what’s the solution, work to get back to the status quo, or take on a scary series of new challenges if we agitate for a transfer? Right now, the latter is hard for me to wrap my mind around. I’ll just keep on keeping this record here, and hopefully it will serve to remind me of the case we may, or have to, eventually make to the district.
Right now I want to echo Paul Simon: “and I’m trying to get some rest, that’s all I’m trying, to get some rest.”