The blog is back, baby! Back big time! And with HUGE, TERRIFIC news to report. We’ve done something for Dar that only took…six years to pull off.
I could tell you right away, but let’s build this up for a minute. First I want to say that I’m very pleased that I paused blogging for the last few weeks…I think it let me focus. Focus on what, you may ask?
Well…Dar’s school’s lead “inclusion specialist,” whom I’ll call E, called us in for a meeting last month, about a week before the school closed for winter break. I had a few issues on my mind that I planned to bring up only if there was enough time. There wasn’t. Although E spent a lot of the hourlong meeting praising Dar’s progress, I got the feeling that was for diplomatic reasons, and that the real reason for the meeting was about Dar’s, uh, continence issues at school. The meeting ended with the usual vague assurances that everyone was doing their best…as well as an IEP document for me and wifey to sign.
Later that day and over Christmas break, I felt bad about that meeting. I felt bad that wifey and I had been told we were just having a “meeting” and were then made to sign an IEP update. Maybe E has to do that for legal reasons, but IEP updates should be…more explicitly arranged. Especially when I had issues I couldn’t even get to. What were those? Well…
Before I go there, you may need context. Feel free to skip this paragraph if you’re a regular reader. Berkeley insists on mainstreaming every kid. No Berkeley public school has a Special Day Class, which is a classroom/program devoted to just special-needs kids. For years, we have wanted the BUSD to say that Dar’s needs would best be served elsewhere. For years, the BUSD has resisted. We understand why. If the BUSD admits that, it may be on the hook for money. Not always, not necessarily: if the BUSD admits that, the first step is to check with literally every other school district in about a 20-mile radius. Unlike Berkeley, they ALL offer Special Day Classes. And if one of them will take Dar, great! But they’re often full. I don’t exactly blame a district for hearing “hey, we’ve got a non-verbal kid who hits other kids, can you take him forever?” and reacting with “uhhhhhh…” And if the BUSD can’t find such a school, and they’ve admitted they can’t do the job themselves, then they have to pay (at least some part of) the fees to send the kid to a Non-Public School. The BUSD doesn’t want to cough up the cash and I don’t blame them either.
Anyhoo, after E’s brief December meeting, I found myself composing much of the below email. But I felt bad to send it to E scant days before winter break started. Christmas and New Year’s came and went, and then I felt bad to send it within the first week after break. But I did finally send it. And it went a little something like this:
Hi E***** –
You’ll remember that I wanted to chat at our Friday meeting last month, but there wasn’t time.
Irena and I are very concerned by your concerns and by the concerns of many people who work with D*****. It feels like certain aspects have escalated.
I really appreciate you doing your best with a very difficult situation. One time I asked a senior person in BUSD/TO about the threshold after which D***** would no longer be able to attend Thousand Oaks. The person’s reply: “there is no threshold.”
If true, I find that answer problematic. I think there should be a threshold. Further, I think there probably IS a threshold but that the BUSD may be legally prevented from discussing it. This would be related to the same legal agreements that parents have signed that prevent them from discussing the BUSD’s arranging of their IEP-level kid taking classes at an NPS.
I suppose that in the narrow sense, the threshold is failing to live up to the IEP. But if D***** can continue with the escalating behavior you’ve noted, and yet still continue to abide by the terms of the IEP, then I think his IEP has been defined far too liberally. In that case I feel his IEP needs adjustment.
Four areas that I think the IEP, or something, must address:
1 Violence. He hits kids. He hits teachers. Recently, transportation called and said that if he hits the bus window again, he’ll be suspended again. I need a threshold here. This can’t just go on and on without meaningful consequences. With a NT kid, I might say that he could be suspended more. But I don’t think suspensions help D***** live up to his IEP. I think instead he might do better in a place where his level of violence is something the staff handles more often and better. In any event, his IEP could be rewritten with a zero-tolerance policy on violence. If and when he hits someone, or something valuable, that would be considered an IEP violation, right? Track: Date, Time, Type (hit a kid, hit an adult, hit wall or something else), Notes (for example, what triggered it, etc.)
2 Screaming. For almost five years now, we have been caught in a vicious cycle where D***** screams to get out of class and the message gets reinforced that the more he screams, the more work he can avoid. I don’t believe this has appreciably changed after almost five years. But it needs to. This isn’t a FAPE for him. He might do better in a place where screaming is less disruptive. I wonder if we could set a baseline for screaming, say 5 a day, and if he goes over, that’s an IEP violation? Track: Date, Time, Duration, Scream Level (low, medium, high), Action taken (for example, Taken off classroom, Managed his behavior in the classroom), Notes (for example, what triggered it)
3 Class Attendance. Related to screaming, but separate. Feels like he leaves class too often, and not necessarily to deliver mail or blow leaves or such. Could his IEP be rewritten that he has to spend a certain amount of time in class, X minutes per week? And we track it. And if he fails, that would be considered an IEP violation, right? Track: A timeline from 8am to 2pm, with all the times/locations for D*****. (for example, 8am classroom, 8:20 outside, 8:30 classroom, etc.)
4 Toileting. We could track BMs during class; how many are there now? Four a day? The goal should be zero. If he doesn’t get halfway to his goal within a year, that should be an IEP violation, right? (This is already being tracked in his journal.)
We would like to revise his IEP with the above items. I’m open to suggestions, but this is our baseline. We would like all four items tracked in his daily journal by the aide on daily basis, one page per day. Let us know if we can send you a suggested template.
I know this is a lot…thank you.
An email like this triggers a thirty-day window during which the IEP team must meet. And to her credit, E didn’t waste a lot of time gathering the tribes. We learned that Dar’s current aide, who he’d had since the start of the school year, quit. A day after we learned that, we got E’s email confirming an IEP date.
I entered that room ready for yet another “everything will be all right” session. More time showing Dar’s marginal improvements in a few areas. I was girded for the usual. We’ve been doing this dance with the BUSD for longer than this blog has existed, in fact for more than six years, which is more than two-thirds of Dar’s life. Although this time…honestly, the people in that room looked…a little like me and wifey look when Dar has been screaming and stamping for hours. They looked exhausted.
As the years of advocacy have gone by, I’ve become more scrupulous about keeping records. I figure eventually we’ll have to show everything to a lawyer or advocate or something. I didn’t actually tape record this particular meeting because I find that puts people on edge. (Surreptitious taping would be a breach of trust; we can’t afford that with the people who are with our children all day.) But I definitely wrote things down that I presumed would help with the case to get Dar more help.
E said that they kept trying interventions with him, and that some work and some don’t. She said they were “guessing and wondering.” I wrote down “guessing and wondering.” Doesn’t that seem like part of an eventual case to get Dar out of the BUSD?
Dar’s third-grade teacher showed up. If you have only had NT kids, you might wonder why we would have any school meeting without the teacher. Well, recall that Dar has a 1-on-1 aide who does most of the teaching. So why does that happen in a third-grade class full of mostly normal kids? (That’s what we’resaying!) In theory, Dar can do activities with them. In practice, the achievement gap between he and his NT classmates get wider every year.
Anyway, Dar’s third-grade teacher is an enthusiastic, wonderful woman, a real-life Ms. Frizzle. She was very careful to say how much she loved Dar and how many students love him (wifey and I are used to this point being made; it doesn’t seem like much of an argument). She said many, many things, but the parts I wrote down were “I don’t know how to help him…I don’t know how to connect.” She said that broke her heart. Later, again: “The hardest part is we don’t know how to help him.” These comments were gold. Why didn’t they come up in December? I sat scribbling and scheming on all the ways I’d be using comments like these in future emails. Somewhere along the line of if this isn’t an indication that he needs another place, then what is such an indication?
E’s boss was there. She has the power to move Dar out of the district. She talked about my email. She talked about the threshold. She talked about the difficulty that other students face because of Dar’s behavior. I asked, okay, when you’ve helped other kids leave the district, what was different?
And then…finally. I want you to picture Indiana Jones putting his hand on the grail. I want you to picture the final shots of the Warriors 2015 championship. I want you to picture Gollum and the ring falling into the lava.
Finally E’s boss said – I wrote and quote her verbatim – “I can say today…I don’t think we can meet his needs at Thousand Oaks, and we need to look at other options.”
Reader, it was as though the heavens parted.
There was a lot more to the meeting. One woman talked about how my email really changed her perspective on Dar. Another woman, who had created Dar’s “Behavior Intervention Plan,” basically said that they had tried, but it hadn’t shown progress. She said I was right to point to the widening achievement gap. But this was all just retconning the moment that had already happened. I showed the printout of the email to E and asked, “do I need to worry about this now?” and she gave me kind of a knowing “nah.”
E’s boss and I agreed that the probable best environment for Dar would be an SDC in a regular school setting, so that Dar is made to interact with NT kids daily (however briefly) – perhaps in P.E. or art class. I asked E’s boss if Dar would change schools by September. She said it could happen in a matter of weeks. But it may not because of logistical reasons, so of course it’s not exactly time to destroy my six years of records.
At some point everyone left the room except for me and wifey. I high-fived her but noticed the slight moisture in her eyes. She reminded me that she wanted this, but she was feeling bittersweet. I get it. This isn’t some perfect solution; no such solution exists. I’ve toured six or seven non public schools in this area. Some would say we’re putting Dar with the paste-eaters. In some ways it feels like a surrender. In other ways, though, it feels like a long-suppressed validation. YES, Dar is too much to handle by any conventional means. Sometimes, a special-needs parent wants to hear that. Some time in the future, when I’ll be having my worst paste-eater thoughts, I’ll hopefully remember how good it was just to feel a room full of that validation back in January 2019.
And if we were in any other school district, we wouldn’t have had to fight for just an SDC. In some ways, we struggled for years just to get back to zero…kind of like living through Trump-created crises.
Wifey doesn’t credit us. She thinks that the school is simply reacting to Dar’s screaming and violent movements having become more intense. (Or his growth spurts; he’s getting more dangerous.) Maybe she’s right. But even if she is…my life just got a lot easier. I feel unlocked. Like Sisyphus finishing off the boulder. Suddenly I feel like I have time to do everything…improve my classes, apply to big jobs, write for film sites, hang out with the cat, be present for R and wifey, heck, maybe invite James Ivory to my Oscar party (!).
And make more blog posts. Thanks for continuing to read; it means a lot.