He’s new. But not so new that I felt I couldn’t joke with him about it. We who toil in the fields of special education share a certain carefree gallows humor, don’t we? After a while all those cute little bites and kicks and verbal assaults become so absurd that it’s a little bit funny. And I know he’s seen worse.
So I said “Thanks for putting up with my son’s verbal abuse
yesterday,” with a friendly smirk. The Boy’s case manager and her other aide
would have laughed and then we’d have had a serious pro-to-pro discussion about
it. But this guy? Not so much. I could see the hurt in his eyes and feel the
cold edge in his voice as he told me exactly how awful it had been. “He was belligerent,” he said.
The Boy had been having an excellent 4th grade
year up until that point. So excellent, in fact, that he’s decided his IEP is bullshit and has taken it upon himself
to exit the autism/behavior program.
I do not give permission for this. His teachers, his team,
and the principal have been extraordinarily flexible about it, though. The Boy
adamantly refuses to be pulled out for his social skills minutes, so his 4th
grade teacher is simply teaching the social skills curriculum to the whole
class. When there’s a problem (which are much fewer and farther between than in
previous years), our kick-ass principal skillfully intervenes instead of the
aides. And when there is a need for academic support? Well, that’s all me,
baby. They just send the work home and it’s Ma Floor Pie’s House of Free
Tutoring.
It’s been working beautifully…sort of. We all know it’s not
sustainable. So this past week, when The Boy’s class had a chance to break a
volleyball record in PE class and The Boy got so excited that he went all
Steinbrenner on some of his terrified classmates and then hid in an equipment
closet…the principal had the New Guy take over for her so that she could get
back to the business of running the school.
Belligerent.
I like New Guy. I feel terrible that my son’s angry words
and attitude shook him up like that. I had New Guy’s job last year, and I
remember how bad it feels when a kid you thought you were “in” with suddenly
turns on you with all the force of his baggage. Even now, in my new job
supporting a literacy classroom, it still happens sometimes. It’s a terrible
feeling. I absolutely understand.
So when I respond to him, I do it earnestly, with kindness
in my voice and what I hope is empathy in my facial expression. Let me explain
to you, New Guy, why it is that my son feels “belligerent” about being tethered
to an autism/behavior program.
Kids who end up at this program at our school? They are most
likely kids who’ve had a spectacular failure at their first school. At age 5 or
6 or even younger, they were labeled the “bad” kid, the “problem” kid. And
everybody believed it. Even the kid himself. Especially the kid himself.
Most teachers don’t know what the heck to do with a student
like that, and some teachers believe they shouldn’t have to know. Some parents believe their child shouldn’t have to
share a classroom with a child like that, and they’re not afraid to fight for that
perceived right. Some principals believe that if the students aren’t able to stuff
every last autistic tendency in a desk drawer and act like their typical
classmates, they don’t belong in their school at all.
That’s pretty much where we were the first time The Boy and
I had our first “You have Aspergers” conversation. He was 6 and it was the
night before his first IEP meeting. He’d been having such a relentlessly
horrible year, and the signs were palpable in both of us. He’d broken out in
hives and developed all kinds of tics. I was losing my hair and developing
weird phobias. The whole world seemed to be imposing a brutal “truth” on us,
that we were unfit and unwelcome, that we were simply wrong and bad and had to shape
up fast or suffer the consequences.
In the end, I chose to move him to a different school. And
even though it worked out very well for us, nobody’s going to say “Oh, hooray,
I get to move to a different school because I’m so very, very different from
the other children!” It feels a bit more like a failure. And every time you see
that autism/behavior team, it’s a reminder of your own inability to outrun your
own “badness.”
“You need to understand that he’s not belligerent against you,” I explained patiently. “He’s
belligerent against the program, and his diagnosis, and all that it
represents.”
New Guy gets it. He doesn’t like it, but he gets it. It’s a
hard job, and I know he’s doing his best.
And I realize that I have a job to do, too.
The Boy and his sister are waiting for me in my classroom. I
set up Little Grrl with the American Girl web site and take The Boy to the rug
for Phase II of the “You have Aspergers” conversation.
“I’ve given it a lot of serious thought,” I tell him. And
it’s true. I have. “But I have decided that you are not going to exit the
program. I have decided that you still need it.”
“So you’re saying the IA’s are going to keep bugging me?” He
tears up. “Is this because of what happened in PE?” he asks. “Because that was
a HUGE MISUNDERSTANDING! And that’s all that it was!”
“No, honey,” I say. And I gather him into my lap like an
adolescent baby kangaroo. “It’s because…you still need this program. It’s not there to punish you, it’s there to help
you. It’s not your fault. You’ve made so much progress. You’ve come so far. But
you will always have Aspergers. It looks different at 9 than it did at 6. But
it’s still there. It grows with you.”
“I know,” he says. And he tears up again. “I just wish I could
be normal.”
“There’s no such thing as normal,” I say. And we talk about
his cousins and friends who have food allergies, dyslexia, ADHD.
“That’s not the same thing as a DISIBILITY!” he cries.
“Actually, it is,” I explain. “Your cousin who’s allergic to
peanuts has a disability with her immune system. Aspergers is a disability with
the…I don’t know…the limbic system, I guess.” (I have no idea how accurate
either of these statements is, but he buys it.)
“But ADHD is no big deal,” he goes on. “That just means they
have more energy, and they’re happy about that!”
“No, honey, they’re not always happy about it,” I say. “I
know plenty of kids who wish they didn’t have ADHD.”
“Really?” He’s genuinely surprised.
“YES, really. It’s physically painful for them to just sit
in a chair. They want to listen to
the teacher but their disability just doesn’t let them. They hate it.” He
thinks about that for a minute. “And your cousin definitely wishes she wasn’t
allergic to peanuts.”
“That’s true.” And then he says it again. “I just wish I was
normal.”
“You wish you didn’t have Aspergers,” I correct him. “And
that’s not the same thing as ‘normal.’ The word you’re thinking of is
‘neurotypical’.”
He likes that. The Boy may hate doing vocabulary worksheets,
but he loves to learn new vocabulary words.
I grab a few books from our classroom office and flip to the
pages with medical illustrations of our brains. The Boy is fascinated. And a
little annoyed with me for focusing only on the amygdala and prefrontal cortex
when there are so many other parts of the brain.
Then I read to him:
In an autistic brain, messages
don’t get sent from one section of the brain to another with the same frequency
and efficiency as they do in a neurotypical brain. The ‘parts’ often work well,
but they don’t ‘talk’ with each other…
The brain of a person with ASD appears to send far fewer of these coordinating neural messages. The result may be compared to a group of people crowded into a room, all working intently on the same project but never letting anyone know what they are doing. – I Hate to Write, by Cheryl Boucher and Katy Oehler
The brain of a person with ASD appears to send far fewer of these coordinating neural messages. The result may be compared to a group of people crowded into a room, all working intently on the same project but never letting anyone know what they are doing. – I Hate to Write, by Cheryl Boucher and Katy Oehler
He gets it. He doesn’t like it, but he gets it.
I can tell he’s about done with this intense conversation,
too. So I wrap it up with my usual talk about being respectful to the other
adults at school. And I tell him that New Guy said he was belligerent. The Boy
laughs.
“Do you know what ‘belligerent’ means?” I ask.
“It sounds like a kind of ligger-elephant!”
“It does, doesn’t it?” And I teach him his second new vocab
word of the day. “Belligerent actually means ‘war-like’.”
“Hmm,” he says, liking the sound of that.
“Seriously, honey, no being a war-like elephant with the
teachers! I have to work with these people, you know.”
He knows. He tries. He’ll try again. And fail again. And try
again. And so it goes.
I turn him loose and start getting the classroom ready for
another day.