I meant to come back yesterday and talk a little bit about what the ENT told us; we are reaching the end of the “first line” treatment plan for Monkey’s infection, and while I adore the ENT, I think he was unprepared for Monkey’s reaction when he said, “Well, if this doesn’t work, we go to surgery. Oh, don’t worry, we just drill a little hole in your ear and—” Yeah. Monkey—shockingly!—is not interested in letting the good doctor take a drill to his head! Go figure! He voiced his displeasure with this plan, yes indeed.
Basically, we can’t SEE the infection in the mastoid/sphenoid areas without a head scan, but what we CAN see is that he still has a tremendous amount of fluid in his ears and just looks like crap. So we are “following the protocol” and trying one last antibiotic for two weeks, and then it becomes a surgical matter. My understanding is that they would also get up into the sinuses to see what’s going on there, you know, after they drill a hole in his ear. Though Monkey’s general reaction to even the idea of surgery tells me we may have to drug his milk and toss him in the back of the car, A-Team-style, even to get him to the hospital for it.
I was going to tell you all of this yesterday. But then I got a phone call from school saying that Monkey had been suspended and I needed to come get him.
And this is where I tend to shut down and shut up. What is there to say about this? How do I explain what happened here without sounding like an oblivious parent who thinks her precious snookums can do no wrong?
Let’s start with this: He did wrong. He did WAY WRONG. He hurt another child, and he hurt his parapro. What he did isn’t okay with anyone, most especially me.
On the other hand: This is a kid with a trail of paperwork a mile long because he has a certified disability that makes this sort of thing more likely if he’s not given proper support. Was he given proper support yesterday? I don’t know. I tend to think he was, to the best of the school’s ability. Sometimes things escalate fast and proactive is tossed out the window in favor of immediate damage control. I get that.
This is where Monkey’s reaction to illness makes me want to tear my hair out. Monkey very rarely runs a fever. It’s how I knew he was sick when he had the flu—he had a fever. But this head infection thing, he’s had that for MONTHS. He HAD it for months WITHOUT COMPLAINT. And it’s clearly making him feel terrible, but he doesn’t process that like a neurotypical person. He doesn’t—or can’t—say, “Hey, you know what? My head hurts. My balance feels funny. I feel dizzy all the time,” or whatever. He says, “I feel great! I’m fine!” And he’s not fine.
We’ve come to believe that the downward spiral of his recent behavior is directly linked to this infection. Being sick makes most people irritable and less able to cope with stress. My guess is that if you already have sensory sensitivities and a limited capacity to deal with stress, sickness really magnifies those shortcomings.
But he doesn’t have a fever. And he isn’t complaining. So I’m keeping the school in the loop as much as I can and still sending him.
And yesterday he completely snapped. And the principal said there was no choice but to suspend him because of the “seriousness of the matter.”
Could we fight it? Sure. Legally, it becomes very dicey to suspend a kid who has an IEP. The argument can be made—and has successfully been made by plenty of parents before us—that he’s being punished for his disability, which is a violation of his civil rights.
Honestly, I care fuck-all about his civil rights at this point. I care that he is sick and miserable and unable to control himself and so deeply ashamed by his own behavior. I care that school is so stressful for him that he had a complete and total meltdown, an epic panic attack that resulted in violence, and that I had to spend half an hour in the office with him and the guidance counselor, talking him down off the ledge, afterward.
There is this moment, with Monkey, after these incidents, that breaks my heart every time. He remains SO ANGRY, so convinced he was RIGHT because he was IN DANGER, and he blusters and rants and maintains his innocence (or maybe it’s more a position of self-defense; regardless, that he did what was necessary), often for a long time. And then the moment comes where he’s calmed down enough that he suddenly realizes. He realizes what he did, and realizes that what he thought in the moment was wrong, and you can watch his face as it dawns on him that, “I did it again.”
And that’s when he crumples and starts saying the things that no one should ever have to hear their kid say; that he believes he’s a monster, that we should lock him up, that he should kill himself.
Anyone who wants to tell me he’s “perfectly capable” of controlling himself can first sit through the crumple stage afterward, and if that doesn’t change their mind, they can, second, kindly go fuck themselves.
So I didn’t fight the suspension, although I made sure to mention that I was aware that’s an option available to us. “Honestly,” I said, “what this is doing is making me realize that he needs to maybe stay out of school until he’s not sick anymore. But can we do that? Keep him out for two weeks on these meds, and then maybe longer after that if he has surgery? How would that work?”
The principal was unsure. I think the principal was mostly very worried that I was going to sue the school or otherwise make a big stink. (I’ll get right on that in my copious spare time!)
I was polite. I was apologetic. I made it clear that while I understand the seriousness of his behavior, it is also clear to me that the school is failing to meet his needs. But I was not there to FIGHT or to WIN. Clearly we’ve all already lost.
Monkey came home and went straight to bed and slept for two and a half hours. Later his parapro came by with some work for him to do on Monday (truly, if I haven’t said it lately, that woman is a SAINT), and he walked straight into her arms, laid his head on her chest and closed his eyes while they hugged, and whispered, again, that he was so sorry.
The weather forecast here is dire; they’re calling for snow and freezing rain Sunday/Monday, and no one seems to know what happens if school is canceled on Monday—does that mean he can’t go to school on Tuesday? Do I even WANT to send him to school on Tuesday?
Whatever storms are swirling around in that head of his, I have to cling to the belief that taking care of this infection, finally, will make things better. I have to believe that things are so much worse because he’s sick. Because if that’s not true—if we finally get him healthy and whole again and his behavior continues to be this erratic—I’m not sure any of us are equipped to meet his needs.