Thank you for all of your support and advice, on and off-line. I kept planning on updating here but then something would change and it seemed premature to post. And maybe just too painful.
So, June and July … he was able to go to and enjoy camp once the psychiatrist wrote a note saying he couldn’t participate in swimming.1 He made great advances in discussing his feelings rather than just getting angry. But he still couldn’t bear the idea of school in any fashion. Couldn’t go to a new school and face new kids. Couldn’t go back to his school as is. Couldn’t go back to his school with accommodations or repeat 4th grade rather than moving up to the middle school because he didn’t want the other kids knowing he was different. (He is determinedly different in that he has hair to his waist and wears only yellow, but these are the differences he’s chosen and that to his mind make him appear better; he doesn’t want to seem weaker, especially since he’s the smallest and youngest in his class.2) He wasn’t asking to stay home – he understood he had to do school somehow, and he gets bored at home anyway – he just couldn’t think about it without panicking.
But then in early August it was like a switch flipped. He started really talking.3 He said he was happy sometimes. He even quit biting his nails. I don’t know what did the trick. Likely a big factor is that I asked my husband to give up on this year’s racing season, which he had thrown himself into even more OCD-ish than usual – which is saying a lot. The medication dose was adjusted, though HB seemed better even before that. Really I don’t know what did it, but I was so relieved.
He was even willing to talk about school, but the only option he thought viable was to go back to his old school if they could make allowances for him to ease his anxiety. So our psychiatrist contacted the school psychologist to see if that was even possible (he goes to a private school; IEPs etc. don’t apply). And the psychologist said it would be no problem. The main things agreed upon were 1) that the teachers would not publicly call him out (something a couple of them were known to do on occasion) if he did not turn homework in during the first weeks of school or if he was not writing things down in class and 2) that he would leave a cell phone (purchased for this purpose) in the nurse’s office and if he was panicking, he could sign out of class and go down to text me. He was not allowed to wander the halls, leave class without notifying the teacher, text in places other than the nurse’s office, or generally disrupt the other students.
The weeks running up to school were an anxious time, but he said he was “nervous and excited – nervcited!” He got his nails and hair done for the first day.
And then he marched in and followed the plan. It wasn’t easy for anyone, but he did what he agreed to do. He went in to school every day and stayed the whole day. He participated in class discussions, did some of the homework, and tried not to disrupt any other students. He sent me texts a couple times a day, but they were all asking for ways to handle his feelings and help him get back to class or about boredom with the curriculum (which did look boring and inflexible, rather different from what had been described in the middle school parent orientation last spring).
Some classes went great, though it seemed that not all of the teachers were on board; for instance, HB was berated in front of the class for not bringing in his reading log and was questioned a few times about going to the nurse’s office. Since we had met only with the psychologist prior to school – he said he should be the go-between rather than have us all meet – my husband now spoke with each teacher and reconfirmed with the psychologist the nurse’s office text plan (the psychologist even said – in front of HB – that he could take as long as he needed to text, which was a mistake on his part in my opinion, but what can you do). Toward the end of the first week my husband and I were to meet with the psychologist and the principal to go over how things were going and ways to make it smoother – or so we thought.
The first sign of trouble was when I complimented the principal’s skirt (I really did like it!) and she snapped, “Hmph. Thanks.” The psychologist then asked us to describe how things were going. I summarized events and said that while it would probably have been better had HB had another few weeks before school started, since that wasn’t an option, we hoped that the accommodations he had would help ease him in, tamp down his anxiety, and allow him to get back to his old self and participate fully after a little while, and that while it had only been one week, things seemed to be a little better for him already.
But I could tell the principal was waiting to talk rather than listening, and the minute she opened her mouth it became clear that not only was she not supportive of the plan, she was furious about it and at HB. She said that his not turning in homework was disruptive to the other kids “because it’s not fair.” She was outraged that he had missed any class time to text. She said that his not writing things down during a class was “disrespectful to my teachers, who trained hard to do what they do, and they do it very well – they’re not psychologists.” Then she said that “honestly, he’s just being, well, bad.” “Bad?” we asked. “We haven’t heard anything about any bad behavior.” So she said that in addition to not doing the work and leaving class (um, those were on the plan?), one day he didn’t clean up his lunch tray, another day he grabbed a ball from someone at recess, and once he fell asleep in study period. Then she threw a folded piece of paper across the table at me and said, “and now THIS.” I opened the paper thinking, oh god, did he write curse words or make a penis joke? only to find a worksheet on which he had written … wait for it … “I like pie.” “He handed this in,” she hissed. (He had been instructed to go through the motions like this if he felt frozen, so that the other kids wouldn’t be curious and therefore “disrupted.”)
I couldn’t help mentioning that he had been at the school for five years without a single disciplinary incident and that this was the first time we had requested accommodations of any kind, and the principal rolled her eyes.
By this point I knew that this was a horrible and hopeless situation, but I figured the best course was to not escalate. I said that HB should certainly clean up after himself and not take balls. The falling asleep was harder because he was having a lot of trouble sleeping given his anxiety over the beginning of school, but we’d let him know it was not allowed. And then I asked what her thoughts were as to the next steps?
Whereupon she announced that he was no longer allowed to text except during one break and during lunch (times when, of course, he is not panicking). He had to do the work exactly as instructed in class (because he was, presumably, faking his panic?). She would not ask the teachers to treat him any differently than the other kids if he didn’t do the work (and, she said, none of them would publicly shame a child anyway; “that’s his perception; that’s not what happened”). And this whole time the psychologist, who gave us the whole plan in the first place, is nodding to everything she’s saying.
We sat for a moment, stunned. Then I said, “This is very very different from what was agreed upon, and it’s going to be a lot for HB to process. From your perspective, if he’s too anxious to do all this, is it less disruptive to the other kids if he is just kept out sick?” Her reply was to shrug and say, “Well, my son sometimes just can’t face school and I say okay, but that’s maybe three days in a year.”
My husband and I were both wanting to shove the table over on top of her and rush to HB’s classroom to rescue him, but I merely said, “Fortunately we have an appointment with the psychiatrist after this. Originally it was just going to be a parent meeting, but now I’m thinking it would be a good idea for HB to come too.” The principal shrugged again, and the meeting was over.
When we signed HB out, he whispered, “Mom, I don’t think it’s a good idea for me to leave just because I’m having a tough day.” “That’s not it, sweetie,” I said. When we got home we told him simply that the meeting hadn’t gone as well as we’d hoped and gave him the new rules. The look on his face broke my heart. “I can’t do that,” he said. “That means I’m done with that school. And they’re liars.” We couldn’t disagree.
Had the accommodations not been in place we never would have tried to send him back and would have explored other options; now we’re weeks into the school year and have no place for him to go.4 And he’s been set back miles; he gets furious if any sensitive subject is even touched upon (though later apologizes, weeping). We’ve told him none of it is his fault, that there’s nothing wrong with him, that we didn’t realize the middle school administration was so different from the lower school, and that they were the ones who went back on the agreement, not him. But he’s not buying much of that, I can tell. He’s clingier than ever and no longer wants to be in the performance part of his rock school (maybe because it’s called a school?). It doesn’t help that I’m a mess over it; I try to hide it from him, but he’s perceptive. I find it hard to concentrate on anything else. Sometimes I think, stop it, there are people whose kids have life-threatening illnesses. Then I remember that so does HB. At least there’s been no suicide talk recently. And he still isn’t biting his nails, so there’s that.
I feel stupid and guilty. We knew beforehand that this psychologist was someone who liked to be in the center of everything and overstep boundaries, but we didn’t insist on meeting with the principal ourselves. And we assumed that the middle school would be like the lower school without properly checking it out. We took a vulnerable little boy and dropped him into a viper pit.
Oh and, by the contract we had to sign, the school still gets their $25,000.
1 He’s a good swimmer but hates it – being skinny he gets cold, he has a phobia about the 6-foot mark due to an incident years ago where he thought he might drown, and while the camp overall is completely relaxed about joining or not joining in on activities, they apparently contract the swimming instruction out to soldiers of fortune.
2 We never got the memo way back when that most kids with June birthdays were being held back a year from kindergarten unless they were so gigantic they would look absurd. Wish we’d done it then; I suppose he might have been a little bored since he was always academically ahead even being the youngest, but since his emotional and physical age are on the young side could’ve been protective. Oh well.
3 And he came up with an amazing analogy. He was asking about when he’d have a growth spurt and we got to discussing how there are different types of maturity and some you couldn’t do anything to rush. He mused on this and said, “I think my intellectual maturity is pretty high … but my emotional maturity isn’t.” I agreed and said that a lot of kids with that combination struggled with anxiety and depression, because they can understand things intellectually that other kids don’t notice, but they aren’t emotionally ready to process all that knowledge.
“It’s like being carsick,” he said. “When your eyes tell you you’re not moving but your brain tells you you are, you feel sick. When I know something but don’t know how to handle the emotions I have about it, it’s like feeling carsick.”
“That is an awesome analogy,” I said, “And you know I’m going to bring it up when you’re freaking out, right?”
“And you know that it will probably piss you off when I do?
“And after you calm down you’ll tell me I’m right.”
“Yeah,” he said, and chuckled. And it totally worked. Even in the midst of an outburst he’d say “I know this is a carsick thing!”
4 For a number of reasons, our local public school is not an option even if we had an IEP. There are a few private schools that might be able to deal with his anxiety and have the flexibility to allow for his being advanced in many ways and behind in others; we’ve got calls in and visits planned, but it’s not clear there is space for this year. We could home-school him if we hired someone to do it (and that may end up being our only option), but it would be immensely difficult not least because he trusts so few people – fewer now – and he’d be forced to be alone with a stranger much of the day.