This is What the R-Word Looks Like: Part 1

It is the first day of the last week of school when I get the call in my office.  Aniyah’s mom is on the phone.  She sounds upset.  Come down.

Crud.  Aniyah’s class, right now, is in the auditorium, rehearsing their grand entrance to the 5th grade promotion ceremony.  Aniyah isn’t with them.  I run.

Denise, on the phone, is rattled but intelligible.  Aniyah had a headache this weekend; it wouldn’t go away.  She brought her daughter into the hospital just in case: she’s spent the last two days in intensive care.  She’s sleeping a lot, in a lot of pain; the shunt in her brain doesn’t seem to be working.

I numbly process this; I hadn’t known there WAS a shunt.  Denise explains that they’re monitoring things closely, trying to figure out if they need to operate.  I promise to visit that night, tell her that I’ll have all the kids make some cards.  I don’t ask questions; I don’t want to be another thing in this woman’s life that she has to take care of.

Upstairs in my office, I grab Aniyah’s binder and riffle through the paperwork. The nurse’s reports tend to piss me off at the best of times with their maddening blend of vague and specific: typically, the triennial report tells me exactly what my student ate for breakfast the morning of the nurse eval, but gives bugger-all idea of what the educational implications are for conditions ranging from De Soto syndrome to cerebellar ataxia to a thyroid disorder.  These reports don’t even mention a brain shunt; one of my paras comes in as I’m tossing the papers around and cursing quietly to tell me, offhandedly, “Oh yeah–she needed a new one two years ago.  Shaved off half her hair.”

Her matter-of-fact demeanor gives me some comfort, steeling me a bit for phase two.  Aniyah’s class is back upstairs: I walk as unobtrusively as I can into the room and ask, breezily, to steal the classroom teacher for a couple minutes.  Ms. Anne is a formidable woman who pulls no punches and suffers no fools: I remember being a little terrified of her when I first met her, and unsure of how things would work out when I put my most severely impacted child in her classroom.  Beneath it all, though, Ms. Anne is a marshmallow: she wept openly in front of her class when the child, an essentially non-verbal boy with Down’s Syndrome, drew her picture in art class, and her hugs are every bit as determined as her scolds.  I knew I couldn’t tell her until she was away from the kids: I knew that her game face only went so far.

While my para held down the fort in her classroom, we talked about Aniyah’s condition and what might happen next.  We realized it wasn’t likely, either way, that she’d come back to school this year, and talked a little bit about how to explain things to the kids.  I made a big poster for teachers to sign.  As things usually happen in my job, I got pulled away for another issue at the time we’d decided to talk, together, with the class; at the end of the day, she gave me the cards.

Visiting hours were over when I finally made it out to the hospital.  As I handed Denise the cards and the poster, she told me that things were pretty much the same: Aniyah sometimes woke up and was talking a bit, but the pressure on her brain wasn’t going down.  She was asleep again, but had sounded excited when she heard about the cards.  “Will you tell her class she said thank you?”  Of course.  “She’s going to be so sad to not graduate with the kids. It’s meant a lot to her, being at this school.”

Mental flashes assail me as I take this in–the thoughts I’ve been having, all week, about Aniyah and her classmates, growing up and moving on.  The amazing community that has built up in this school around my students with the most significant cognitive challenges, and my worries about what things would look like for all of them in middle school.

“Her classmates are sad, too.  But I’ll be sure to tell them.”

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