I am thinking about Jacky today.
He was a fifth grader during my first year at my current site–tiny for his age, he still fit into toddler turtlenecks with fire trucks on them and fleecy knit pants that would be snug on a kindergartener. Like many kids on the spectrum, Jacky had sensory processing issues and was exceptionally change-adverse: the consensus seemed to be that what worked when he was four might as well still be worn now.
Jacky’s reputation preceded me into the building–he was the oddball math genius who looked no-one in the eye, who had a habit of yelling “FUCK!!!” in the middle of silent reading, who fixed everyone’s computers and terrified the office staff. “I’m not working with Jacky”, I remember one of my paraprofessionals saying on the first day of school. “He’s smarter than me.”
Jacky, I soon learned, was a remarkably easy kid to work with, as long as you could give him a predictable world. Faced with a situation in which he split aide support with a non-verbal kid with Down’s Syndrome in another class, I trained Jacky to be his own paraprofessional so that his peer could have the grown up. His general education teacher was an amazingly skilled and compassionate man who shared Jacky’s enthusiasm for math and technology; his peers were quite content to let him hog the computer for activities such as designing and printing daily agendas, which he loved for the predictability of this-after-that. Give Jacky a world of expected things and sequences, and the world was indeed a beautiful place.
Alas, though, the world can never stay exactly the way we expect that it will. A sub, a quiz, a fire drill, a canceled assembly–when things changed in a way Jacky was not expecting, his very foundation was shaken by this change. When something happened around him that he didn’t understand, he would engage in a very specific tantrum, equal parts heartbreaking and, honestly, hilarious. He would run screaming unintelligibly down the hallway and into my office, where he would pick smallish items off the tables and shelves, then throw them, one by one.
Jacky, what’s up?
I have to rewind time. The first time he said it, I didn’t understand. It wasn’t clear until the end of the tantrum, when I realized that the substitute had asked him to do something he couldn’t do, and he had responded in a way he knew, even then, that he shouldn’t have, and it seemed less possible to apologize and move on than it did to simply go backwards and not let it have happened. Something happened that shouldn’t have. He needed to rewind time.
Jacky, you’re upset. Something happened that upset you. But you can’t rewind time. It moves forwards, not backwards. Something happened that upset you. Let’s talk about that.
No. I have to rewind time. Another object gets thrown. They are never aimed at me.
Jacky, you can’t. Time doesn’t rewind.
I have to.
You want to. Something happened that upset you. Something happened that made you want to rewind time.
Five objects in, or so, three or maybe a couple more stated intents to rewind time, Jacky would calm down enough to try his next strategy. He’d go to my office phone, yank it off, pick it up.
Jacky, what are you going to do with that?
The first couple times it happened, I wrestled the phone away. I thought first that he was going to call his family, complain to them, demand to be picked up and taken from a situation he disliked, and I assumed that they’d do it, because they felt a good deal of shame about what they saw as his misbehavior–they’d want to remove him, too. I am too much of a behaviorist to ever let that scenario play out just like that, in my room and my program: escape, in Teacher Beth Land, is a reinforcement you EARN.
The second time I wrestled the phone away, it was because I imagined him calling 911. What is your emergency? I need to rewind time. I imagined tying up the system with that, preventing God knows how many legitimate dispatches, while we sorted out the question of whether we needed a medical ambulance or a psychiatric hold.
And then, honestly, I realized something. My phone doesn’t dial out anyway. Let him have his distress call.
When he picked up the phone, I realized something else. Jacky had never gotten that far in the script before. He didn’t have the words to speak into the receiver. He’d never gotten past the part in the movie where catastrophe is imminent and our hero makes a phone call. There was no-one on the other end. Nothing to say.
Sometimes, he’d hang up. Sometimes, he’d toss the receiver and the coiled cord would swing it back. Next up: five minutes of uncontrollable sobbing.
And here, again, I had to try a few things till the right response came to me. Reassuring hand on the back led to several more thrown items. Soft, soothing words were too much auditory stimulation. Now, thank you very much well-meaning paraprofessional, was NOT the time to make Jacky pick stuff up.
I let him cry, standing for a couple minutes on the other side of the room, gradually moving into proximity. Every 30 seconds or so, giving the same simple message in a matter-of-fact tone.
You’re upset. It’s okay to be upset. We’ll talk when you’re ready.
The last minute or so I would spend on the floor with him. Not touching, not talking beyond the script. Just there. And always, a moment came when the crying died down. His breathing slowed and regulated. He looked up, stood up. As I stood up, too, he’d begin picking up thrown items. A couple minutes later, we’d process it all.
The whole thing took somewhere in the realm of 15 minutes, which is a bit of an eternity when it takes place in a highly trafficked former staff lounge with bathrooms on either side of a tiny, sobbing fifth grader. When people came in, I’d wave, point to the bathroom, make emphatic head-shake gestures if I saw the tiniest impulse from any of my lovely colleagues to get involved. “When Jacky gets to this point, it’s like a seizure”, I’d say afterwards. “He can’t fight it. We can’t fix it. You just clear the area and let it unfold.”
And I am thinking of Jacky on a September afternoon, when I visit my friend in the hospital. She has cancer. She looks worse today. There are three of us visiting–she moves in and out of lucidity, alternating sobs and small talk and questions about who’s in the room. She kicks us all out because suddenly, she realizes that she needs to use the bathroom and she can’t get to the bathroom. As the nurses clean her up behind the closed door, I am talking to two people I don’t know very well.
And they’re talking about what to do with the materials someone else got from her classroom last week. One tells another, you shouldn’t pay for a storage unit. She’s not going to teach again.
What does Ellen want? I ask it, having myself accepted the idea that this cancer is terminal, but still thinking that Ellen is fighting it. Still thinking she’s got months. I’ll rent the fucking storage space, is my follow up suggestion–if it helps Ellen to imagine herself teaching again, we shouldn’t get rid of this stuff until she passes.
And it is then, when I’m still imagining a room full of calendars and leveled books and a puppet or two, that someone whose name I don’t even know looks at me and says it. “We met with the palliative care team yesterday. She knows she’s dying, but she forgets sometimes, because of the meds and because she’s not sleeping much.”
Dying. How soon? (And again my dumb thoughts…months, and storage, and maybe there’s still time for that barbecue we talked about, and..)
She won’t be able to leave the hospital. It might be a few days. It might be two weeks.
And suddenly, in the hospital, I have to rewind time.