Fair warning: this post contains foul language, and discussion of active shooter/lockdown situations
This morning as I was packing Daniel’s backpack for school, I had to untangle his dog tags from the clasp they were wrapped around, and I had a moment that shook me to my core. If Daniel was in a lockdown, all of his teachers, therapists, and aides know that his d-bag (or diabetes bag, for those who don’t know) stays with him. It’s got candy and juice in it, so that he does not go too low, as well as extra insulin, an extra pump site, and needle tops in case insulin must be given by pen instead. It also carries his epipen and glucagon, both of which are for extreme emergency use only.
Anyway, as I’m unwinding the ball chain which the dog tags are on, they’re jingling in my hand – Daniel removed the silencers long ago, because for whatever reason, they bothered him. But this jingling, at a time when he would need to be as silent as possible, could actually put him in jeopardy, could make him a target in an anxiety-filled active shooter situation. Holy fucking fuck.
Now, this seems like it would have an easy answer, right? Buy new silencers, or take them off the bag altogether. We will pick up more silencers soon, and I did remove the noisy tags, and in their place put one of the [silent] medical alert bracelets we bought him that he has refused to wear since forever. We got him the dog tags originally because he would not wear the bracelets. We bought identification bracelets in a bunch of different materials, and different sizes, and he cannot tolerate any of them for more than a couple of minutes, if that long. Also, the bracelet only identifies him as having type 1 diabetes – there is no mention of him also being autistic, unlike the dog tags.
Here’s the thing, though, what really made me panic this morning: my boy is rarely ever quiet. If his teachers directed him into a classroom, or elsewhere, he’d go. He knows his school staff and knows who he can trust, thank goodness.
But if he had to be still and silent for a prolonged period of time, how would they get that to happen? He’s a kid that rarely sits still, often needing the vestibular stimulation that comes with his body being in motion. He does lots of skipping, lots of running and jumping, lots of pacing, and lots, lots, LOTS of talking. Jabber-jaws McGillicuddy, that’s him, and when he’s not talking, he’s humming or clearing his throat – more stimming.
It’s not often that I am speechless, but right now, I can’t even fathom how to teach him to do this. Forget the reasons for why he must learn, but how to teach him? How to emphasize to any six-year-old the importance of silence in such a situation, without scaring the bejaysus out of them?
I read this article, an interview with two women who are professors of special education, and who are both special needs parents. These women have developed an IELP, or Individualized Emergency and Lockdown Plan, to supplement the IEPs of special needs students in the same way a Functional Behavioral Assessment or Individualized Health Plan might. Some of their suggestions include detailing strengths a student might have to help them in a crisis, and medical, communicative, and sensory needs a student might have that would require intervention to keep them safe.
Some of this, when we prepared Daniel’s IEP last school year, was already addressed — at least from a medical aspect: we have an Individualized Health Plan folded into his IEP to take care of these things. The autism aspect never occurred to me. Never. You can bet some of it will be brought up at our next IEP meeting, though, especially their simpler suggestions like the employment of social stories, and the need for practice.
One of Daniel’s strengths, at least in this specific scenario, is that he rarely exhibits fear. This scares the life out of me, because he can be quite reckless, but he wouldn’t be afraid of the dark, or of having to hide under desks or behind bookshelves or whatever. On the negative side, I’m certain that the alarm bell disturbs him; I’ve seen him cover his ears for them before. God forbid he heard gunshots, would that noise freeze him? Cause him to shriek like when he yells at us for being too loud?
From a communication standpoint, his biggest challenge would likely be following directions. He can speak (at great lengths and with huge vocabulary), though he is often unfocused and practices “scripting,” a function of echolalia, and needs frequent redirection back to real life. In an emergency, would he be able to follow instructions to hide in a closet? If posed as a game, he might enjoy it, but he might giggle if he thought it was supposed to be fun. Argh! And from a sensory standpoint? He’s not a chewer, usually, although he will sometimes chew on the neck of his shirt. No problem there. He does have a security blanket at home which he uses to self-soothe. Perhaps we consider putting something similar but smaller in his bag? I honestly don’t know, but parent-teacher conferences are next week, and this warrants some further conversation, for sure.
I did email his teacher, to ask if they’d ever done these drills before. I am grateful to have a good relationship with her; she has worked some miracles with my son, and he adores her. She assured me that they have practiced numerous times, keeping the reasoning very simple and only referring to them as “safety” drills. She reassured me that Daniel participates, and follows directions, and has shown no negative reaction to their practices; since he has not once mentioned them, I’ll assume that he isn’t phased by them, and take that as a win. I think I’d rather he be oblivious to the reasoning than to be afraid and anxious, as those two emotions exacerbate the diabetes.
While all of this is on our minds, my four-year-old, Owen, had a lockdown/active shooter drill at his pre-school this week. HE IS FOUR. After last week’s mass murder at Marjory Stoneman Douglas High School in Parkland, Florida, the teachers at my kid’s preschool decided this was a must. I should add that his preschool is in a church, but of course this doesn’t mean much in today’s shoot-anywhere world, and because it’s a church, there’s actually a lot less security than most schools have.
While I am so grateful to the staff at this school for wanting to protect these precious, precocious babies, all I can I think about is how Owen will process this. He’s a tough guy, for sure, but he is so sensitive, and shows many signs of having anxiety already. He’s aware of all of Daniel’s medical issues – he even prevented Daniel from eating a chocolate with nuts in it just the other day – and takes pride in protecting his big brother, but I cannot think of what I will say to him when, a few days from now (if it even takes him that long), this comes up in conversation. I’m at a complete loss.
There are days when I think, “How irresponsible was I to bring children into this shitty, shitty, world?” Then I think of the Genesis song, my theme song really, Land of Confusion: “This is the world we live in/And these are the hands we’re given/Use them and let’s start trying/To make it a place worth living in.”
Change is going to come; it has to. I don’t know yet what that change will look like, but I’m going to bet it comes from tech-savvy, fed up “children,” like the ones at Marjory Stoneman Douglas High School, who recently stormed the State House in Florida. For the record, #ImWiththeChildren. While I am busy figuring out how to keep my own kids safe, and how to explain to them what’s happening, these inspiring young minds are doing everything they can to change the status quo.
Maybe in a few years, I won’t have to worry about these drills. A mom can dream.