Follow-up: The Meeting

I wanted to pop in and give folks a follow-up on the Meeting. This was not an IEP meeting, but one to discuss "discipline." And I have a few important things to say about it.

For one, I am totally and completely grateful for the people who work directly with Joey, or as I prefer to call it TeamJoey. We only as the New Autism Person, the WonderPara, and Dr. Awesome (the vice-principal) from TeamJoey at this meeting, but we also had the other vice-principal and the principal at this one, because it was a discipline hearing. Also, I took my friend, who is acting as Joey's advocate (and is doing a FANTASTIC job keeping things moving when all I want to do is scream and sob wildly, and who knows what questions to ask), SuperDude. And the best thing I can say for all of these people is the highest praise I have:

They all love Joey.

So that's a good place to start. The problem is they have no idea how to help him. I came out of the meeting much happier with New Autism Person, because I felt there were lots of ideas coming from that quarter this time, and that they were definitely against this being a discipline issue. Its a disability issue, not a discipline issue. But I think I've already discussed that, right?

Finding that professionals do not know what to do in their professional capacity, however, is something I always find disturbing. Yes, they asked questions. So did we. The principal was accommodating, but a bit on the boast-side of being so, since I had specifically met with them before the year started about this exact very possible problem, and was told everything would be oh-so-fine. And I did get to look them in the eye and say, "you know, at home, every time Joey has a meltdown, I did something wrong. Every. Time." Because you know what? You don't punish someone else when you make a mistake. And Joey is the child. I am the adult. Doing the right things to de-escalate and support him is my job. Not his.

Teaching him to self-regulate and cope, so that when he is an adult and it does become his job he can do what is needful, is also key. It's also in his IEP. Punishing a child for failing at a lesson before he's been taught it is also wrong.

This is why using positive, proactive strategies is so critical. Try not to have the meltdown in the first place. If it starts, be ready. Try to counter-act, but be ready in case it spirals to a Level 10. KNow what to do to keep everyone safe.

This is what I am asking for. Don't suspend him. Teach him.

Now, we move on to another IEP (we already have the FBA underway). So I am putting together a Manual of Joey, to do some JoeyTraining, since what I've done so far has been... not ignored, but not taken to heart, either.

I'm a teacher, after all. I can do this.

Real Terrorism

I sit here, waiting. I had to cancel my work shift. There is no way I am going to risk scoring exams today, those are people's lives on the line. So I wait.

I haven't slept. I passed out for about an hour, but not slept. I spent the night trying to track down anything I can find online about autism, anxiety, aggression, meltdowns, positive behavioral interventions, you get the picture. I need to go to the library and get real information, but that got spun out, too, because Andy is sick.

Allan got a phone call Friday, while I was at work.  There was something about discipline, and an incident on Friday, and needing to discuss an earlier suspension. There was confusion about the phrase "need to meet before Joey returns to school." Of course, I went there at once, but no one was there on a Friday afternoon at 5pm. I emailed. I called. I finally got a response, with this same phrase in it, at 6pm on Sunday night. I emailed back as soon as I got that email, about 20 minutes after it was sent, to get clarification. I got no response.

So this morning, I had no idea if the bus was coming or not. I decided to act as if it was, and went through the normal morning routine. We were in luck. The bus came. No meltdown over that, but with my nerves, Joey picked right up on red flags- he was brittle. I emailed the school, but that did about as much good as it apparently usually does to tell them anything- none at all.

The phone rang. My heart dropped. Joey is having trouble at school. Joey's advocate can't get to school until 1, but can't I move it up? No, I can't. No advocate, no meeting. I'm not going in there, after having loaded them already with information about why they shouldn't be suspending my kid, without that advocate. There needs to be somebody on Joey's side in there who has had some sleep.

And then there was the reports this morning. h, I finally get the "report" I was supposed to get on Friday, but that teacher "doesn't know what happened in ISS", that was the para. So I ask for a report from the para, and get told, oh, the para doesn't send emailed reports. But she is the only one with the information. I am not walking into a meeting with admin with no information, how would that be fair to Joey?

Four times in four weeks. They have suspended him four times in four weeks.

With all this, how can he possibly be safe? How can he possibly be in a proper environment? If they keep suspending him, doesn't that say, loud and clear, that they cannot handle him or support him properly? And yet, if I go get him, the school "wins" because they don't have to provide him with his education and services for the day. Or the week. Or whatever. They don't have to service him when he is suspended, because, well, he's suspended.

I should have have pulled him from this system three years ago, when we first saw him regress from lack of support. He left second grade a happy, healthy kid, well on the road to being a functional, self-regulating person, ahead in almost every academic subject. Star in math, star in spelling, reading on the sixth grade level. Able to walk independently between classrooms, between class and cafeteria, between class and bus. I should have pulled him when, come September, none of that was possible. I should have hired a lawyer. I should have gotten him into a better school situation. I should have insisted on the model that worked for him: academics in the morning with teachers well-versed in Joey's needs and with his para on standby, lunch at noon, afternoons with autism-specific resource services. I should have done something. Anything.

Anything but this. The waiting. The wondering. What is happening to him? What is he feeling? How is he being treated? Is he safe???

Out of sight, out of mind

Trying to fight for understanding of both Joey and Andy everywhere is a daunting task, often an overwhelming effort of fighting prejudice so ingrained, so pervasive, so accepted in our culture and society that we find ourselves at a loss for explaining why it is so inherently wrong. Our culture's experience and even language is geared to fully accepting the discrimination, takes the prejudice as accepted and fact, weaves it into the fabric of even basic communication and understanding.

It has been really rearing its ugly face this month, too. Joey has been suspended, either in or out of school four times in the last month. Four times. He has been so overwhelmed by anxiety that he has lashed out in frustration, melted down, with power, violence, and vehemence, that they have removed him and kept him out of his classroom- and once out of school- FOUR. TIMES. We're averaging once a week. I can't see how, even if this was a situation of simple "bad" behavior, this would be viewed as effective or acceptable; but being that Joey is autistic, and related to that has a severe anxiety disorder, it is simply insane.

Yes, I know he hit adults, shouted obscenities, and did some other things that were unexpected and inappropriate in his frustration and desperation. Yes, he was able to communicate that he wanted to go home, and did most of these things with that goal in mind. If you were trapped in a haunted funhouse of freaks and wanted out, you might try anything you knew would get people to help you leave, too- anything you've seen or experienced as successful in getting you the hell out of there. Having the freaks tell you that you aren't allowed to leave and have to do strange, overwhelming tasks (or monotonous, pointless tasks) you know are impossible for you to do that moment, upon pain of scorn and punishment (or even if they try to bribe you into doing the impossible tasks) would probably make you fight harder, or try something more desperate and energetic. Like hitting them. Like running out of the room, or trying to escape the building.

Now imagine you've been in the funhouse for years, and have to go through this every day, with no end in sight.  

See, Joey is disabled, and that disability includes issues of handling anxiety, processing sensory information, and regulating emotion. It also includes problems with effective communication, though I more and more suspect that is a problem that cuts both ways- he has trouble communicating, and people around him don't put in the effort to understand, which makes it a frustrating spiral of nonsense. He lives his entire life like Alice in the Mirrorworld, only he never wakes up from it. Wonderland and Mirrorworld are the realities he has to learn to deal with. And I'm not talking about the fluffified Disney version, either. I don't think it any wonder that these kids struggle with depression and anxiety. I don't think it any real wonder that Joey has been struggling with depression and anxiety for years now.

Trying to explain this disability, and the need for supports, to other people shouldn't be hard. However, I find it is like trying to have a long talk with the Caterpillar. After a while, you wonder who is the one not making any sense.

We have friends who are in wheelchairs. Yes, they are trying to learn to walk. However, I have never seen anybody punish them for not walking across the room, even just once; or take their chairs away for a day, because hey, they won't die without them, right?

This happens to Joey all the time.

Who would put the Deaf child in the regular ed classroom without an interpreter, because hey, they're smart, and shouldn't they be able to read lips? Why isn't that good enough for them to understand this new science lesson? Or maybe we can throw them in with an interpreter, but we don't offer signing lessons. What, don't Deaf people use sign to communicate? Why doesn't this child understand sign automatically?

This happens to Joey even more of the time.

And really, it boils down to autism being invisible. You can't see it. You can see clearly that our friends cannot walk. You can see their legs and feet aren't developed for it, and you can see they struggle when they try, even with fancy walkers and supports. A Deaf child tossed into a hearing classroom without support is also obvious. It's ridiculous. It is so ridiculous, it's stunning how often it actually and really happens- after all, you can't usually tell someone is Deaf by looking at them.

Autism is invisible. You can't see the processing problems, the neurological differences. The facets you can see are often overlooked- for example, Joey's weight, which is a combination of metabolic difference (due to neurological difference), dyspraxia, and sensory disorders (Joey is sensory-seeking with oral stimulation), is often just overlooked as too much ice cream and credited to laziness, bad parenting, or whatever, because our society is so totally accepting of weight discrimination and fat shaming. (Autistic kids who have the opposite issue, where they may be neophobic or otherwise don't eat or absorb calories, move constantly, have a high metabolism, etc. also are not seen to have any real "issue" either, because our society loves thinness and values it- so those kids get no help or support, either). The uneven ability to access skills is ignored by the adults who should be helping him and teaching him.

It's even in his IEP. Goal: to be able to cope with stress using behaviors appropriate and acceptable in a classroom. It's right there in his contract. He's learning to do this. Expecting him to do it is like tossing Alice in Wonderland at a kindergartener and expecting them to read it, because hey, aren't they learning to read?

Then punish them if they don't read it perfectly, aloud, in front of the whole class. Punish them in a very visible way, one that students find particularly threatening or humiliating. Like, say, sending them to the office and suspending them.

Think of how those other students might feel, seeing what happens.

Why are people shocked by meltdowns? Why aren't school staff extensively trained to deal with them? After all, it's not just autistic kids who have them.

Imagine how you'd feel.