Sunday, November 03, 2013

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.


farmwifetwo said...

I'm wading in... but I'm not sympathizing. Russ is 12, Level 2 or mod/severe autism and no longer ID per the non-verbal testing in May. He just bombed the speech and language testing earlier this month the SLP did... he listens and learns, he speaks on his terms, but except for yes/no answers does not respond on command. You'd think I would have agreed to put him back in regular program and I fought and fought to keep him in the Dev class and won.

He is doing Gr 7 spelling and got 14/14 on his test. He is doing Gr 3 math - regrouping currently - and can do it alone. He plays the glockenspiel in regular Gr 7 music and takes regular Gr 7 gym. He attending the Hallowe'en dance and stayed and danced the entire time (with his hands over his ears) and had a blast. The other 4 returned to class.

This... is self-contained. A world where education is taught at their level - which means like a one room school house 5 kids/5 different IEP/programs.

My kid is thriving and loves his class. My note every night says "big smiles all day". My kid gets enough PT/OT/SLP and EXERCISE!!!!! To manage his day. He's learning to cook and Fri after lunch they watch a movie.

Yet, he's integrated in different classes, he's appreciated, the other kids talk to him every time we go to the mall... NORMAL kids.

Had I moved him to a regular room I would have been lucky to get enough EA support, not enough OT/PT/Exercise etc etc etc All the reasons we left at the end of Gr 3.

Joey needs self-contained. He needs the freedom of movement, the supports, the quietness.

Just because you could.. doesn't mean you should. My nickel's worth.

Joeymom said...
This comment has been removed by the author.
Joeymom said...

Joey is in full self-contained now, technically with an autism resource space and with access to an autism resource person, but she is also the speech therapist and only works 4 days per week.

He no longer attends "regular" classes of any kind, and has not done so since the end of last year.

He also officially has a 1:1 aide/para this year.

We are headed to a more restrictive environment all the same. But thank you for your input and for not "sympathizing."

Stimey said...

I hate that Joey has to go through all of this. It makes me so sad that the very people who are supposed to know how to teach our kids so obviously can't or don't want or I don't know what. You and Joey both work so hard at this. You have all of my love and my support.