I have had a number of, well, poopy days lately. The reason? Maya, a fiesty pig-tailed fifth grade student who loves drawing, wears a lot of purple, and tends to go upwards of 10 days without a bowel movement. Her family has taken her to specialists all over the place to try and understand what’s up with that–asking Maya directly is, of course, a good place to start, but Maya’s intellectual disability stacks on top of the speech impairment and doubles up with the hearing issues. She has, over several years with me and the speech therapist tag-teaming on language goals, significantly increased her working vocabulary: put in practice during situations like this, this means she alternates “I don’t know” with the synonymous statement, “I have no idea”.
So, inexplicable pooping issue. Which is fine, really; I’ve dealt with much worse. And usually, I don’t have to deal with this at all.
Lately, though…well, lately Mom and Dad have experimenting with, um, laxatives. Because Maya has finally become enough of a pre-teen that she has strong negative opinions about the other way of doing this. “We used to give enemas, but she’s clearly done with that.”
Even as I type this, my alarm bells go off. Too. Much. Information. The same thought I had, in the moment, listening to Dad explain the in-home change in procedure in the hallway last month, as Maya walked, out of earshot, over to line. Too. Much. Information. And yet not really. Because really, sh!t happens, and when you have a child with special needs, sometimes, when sh!t happens or needs to, we should all know about it.
Especially when the family is trying to get the dosage right. After one day of multiple soilings and a number of outfits borrowed from Kindergarten, Maya’s backpack contained a few extra sets of underwear. But alas, at times, no pants. And sometimes, even three pairs of undies were not quite enough. Maya reads upwards of 120 words; she can at times carry on a pretty sophisticated conversation. But she does not seem to notice when she’s soiling herself, despite the doctors assuring us that the plumbing’s all intact. A number of conversations were had during the Week of the Incorrect Dosage which I’d rather not remember, including phone calls home with some rather explicit descriptions of why 3 Pairs Was Not Enough.
One two-part conversation, though, sticks in my mind. It encapsulates for me all that is messy and difficult and human about working with students who have significant disabilities, as they grow up and become more aware of themselves. As the trust they need to have in the people who take care of them balances, as it absolutely must, against their need for dignity and control. Three days before Bathroom Incident Number 2 (no pun intended), I had to make Maya wear one of Ja’Neesha’s Pull-Ups because we were simply out of extra underwear and her parents couldn’t come.
It broke my heart, really, to have that conversation. To meet her initial “Babies wear diapers” with the feeble distinction that “it’s just back-up underwear.” I realized, as she let me do to and for her something so personal and uncomfortable as this, how utterly vulnerable she is to people whose intentions are less pure than my own. I understood fully that these handfuls of moments, in which I cleaned up an 11-year-old and made her put on a first grader’s spare Pull-Up, were both the best available way of avoiding humiliation and, unavoidably, a series of humiliating events.
Fast-forward to the next Adventure in Feces. Maya’s system is still, it seems, figuring out what to do with a laxative: instead of having one big movement, she tends to, well, have a lot of little ones. She, for want of a better term, leaks a bit, for hours at a time. At home, her family can sit her on the toilet for upwards of an hour, or change her clothes a dozen times. At school, that’s not an option. The Pull-Up route would, honestly, be ideal. But she’s not a baby. And she says so. And it’s right for her to do that.
Compromise: pads. Which leads, of course, to another conversation, as I pause from my busy schedule of reviewing long division and leading Social Skills Group to introduce Maya to feminine hygiene products, just a little earlier than she otherwise might meet them.
“Is that a diaper?”
No. I’m more defensive, perhaps, than I ought to be, a part of me wanting to be straight with her. Kid, I lied last time. That one was a diaper. This one, though, seriously, this time it really isn’t.
No. It’s a pad. It’s something grown ups wear, too. She gives me a quizzical look. Okay, here we go. I had gotten parent permission to fully explain the product I was using. It was time, clearly, to have a bit of the Young Lady Talk.
It’s called a pad. You wear it to, well, you wear it to keep your underwear clean. Grown up ladies use them, too, because when you get older, there’s, well, there’s blood. It’s okay, it’s natural, but young ladies and older ladies, well, having blood down there is something that happens, sometimes. So this is something women use, to keep their underwear clean. It’s not a diaper. It’s not a Pull-Up. It’s for women to use.
And here, well, thank God for cognitive impairment. Because the idea is so foreign to Maya that she doesn’t really question it. She doesn’t ask if it hurts, or how much blood, or why it happens. We utterly dodge the world of the Judy Blume novel that I am re-reading in my mind as I explain pads to her. Maya hears me say that grown ladies can use it. She hears me admit that, yup, sometimes I use it. And she’s bored, and she wants off the toilet now, please.
Too. Much. Information. And yet. This is the reality of teaching, of life. We think that there is one kind of information that we need to deliver. We think we’re growing readers and writers and doers of math. One week after Maya’s bowels calm down, I am in a meeting with colleagues who teach students with severe disabilities and the professors who run a credentialing program: we talk about how to write grade-level content goals for students with the most profound intellectual impairments, how to maximize engagement with the general curriculum. It’s valuable. It’s necessary. But it’s not the whole lesson. The whole of teaching children with special needs is so much greater than test scores and IEP goals and time sample data. It’s messier and more important than anyone admits.
It may be a mark of my fundamental insanity that I can find a metaphor in Maya’s issues with fecal incontinence. But I can, and I’m sharing it. You decide if it’s too much.