Oh, Anxiety! Old friend! Where have you been????? Oh, Hyper-focus! Long time no see!!!! And, lest we forget: Hello, Darkness…J’s old friend…seems like you’re lurking somewhere in there, too.
You guess right. The med-reduction gamble is, so it seems, a bit of a bust.
J had, and I quote, a FANTASTIC day at school yesterday. He came home in a good mood, chattering away and continued that way for a couple of hours. As he put away his snack-time things, I noticed a small nick on his right thumb. When I say it is small I mean you can barely tell it’s there; had it not been because it seemed a little pink around the edges, I wouldn’t even have noticed it. I had him wash his hands, and we put a dot-sized band-aid on it.
TGG says (this morning…he should have said something last night) that J wasn’t as enthusiastic about exercising as he had been the past few days. Dinner was a relaxed, enjoyable affair…
And then Anxiety set in, and J required the kitchen put to rights immediately. He was quiet after dinner, had his med, pepped up some, and then went into hyper-focusing on trivial (to us) things. That nick on his thumb became, to J, a bullseye; he rubbed his hand, made sure the bandage stayed on, protested when it appeared to be loose. We got him engaged in putting together a brand-new puzzle, and we sang along to That’s What Friends Are For from The Jungle Book as we did this. J found this entertaining, and was very happy and giggly until it was time for his shower.
Throughout the evening we’d had multiple rounds of his Bus Song, and of SCHOOL, LUNCHBOX, BACKPACK, WORKBOOK with his Proloquo, but he was calm throughout. I can understand his wondering about whether there will be school or not because he doesn’t really understand the concept of weather interfering with these things, but we’ve made a very strong showing of how there is no snow to interrupt the school calendar now, and of telling him that his boots can now go back into the “Winter Clothes” crate. The anxiety, low-key though it was, was present.
By bedtime we’re on a constant chorus of YELLOW BUS, SCHOOL, COFFEE, and I was pretty much preparing myself for a phone call today. Mind you, I wasn’t being pessimistic, but I could tell that J wasn’t his usual peppy self. There was something of the melancholy poet in his demeanor, and he kept worrying about that nick with its (now bigger) band-aid.
I slept fitfully. I kept waking up wondering if J was sleeping well. I can’t say I saw light in the hallway, but I did wonder…
He was up early today, and -speaking in an uncharacteristically soft tone- came to our room to ask COFFEE? YELLOW BUS? I greeted him with a very prompt and calm good morning, and he continued to speak very softly. He was happy when he was getting ready for school, and Dada reporter a very happy J hopping on the bus to school…
An hour and a half later the story had changed.
During Art class, J’s teacher told me, something (undefined, undetermined, unidentified as of yet) set him off and he launched a bout of SIB, and -if the third-party reports are to be believed- he got aggressive towards others. Because this information was exchanged during a rather rushed call, I could not be sure that he DID try to smack anyone other than himself until I had a chance to speak to the teacher with less stress.
Once back in his own classroom, J was quiet and left to his own devices by the aides. His teacher, however, intervened and said “we have to stick to the BIP.” As we spoke on the phone, J started crying; not the loud, wailing cry of one who knows he’s in trouble and is gunning for sympathy. His teacher said “he is looking down at his lap, wiping his eyes, and you can tell he’s upset.” THAT, my friends, is J’s way of showing regret. THAT, my friends, we can work with…
I explained that we do deep-breathing to help him relax when he’s overwhelmed, and that this might be a good thing to try at school, especially when one has to have a difficult conversation with J. In my book, any conversation that requires helping J understand that his feelings are totally normal, that he can -with a bit of effort- manage them, and that he’s not as alone as his Autism would suggestively whisper in his ear is a conversation that needs deep breathing.
The thing is this (and I realized the other day that I say “the thing is this” quite a bit…so there is more than “the thing” that “is”,) J is in need of an anchor. J is in need of stability that will remind him that the boat is moved by the ocean, and he moves with the boat that moves with the ocean, but that he is still himself. Coddling, yes, is wonderful, and -like every other man I’ve ever known (my apologies to any males who would think this too bold a statement…I’m talking about the men I KNOW rather than men in general,) J worries about not being as in control of things as he’d like.
There are concepts that are rather overworked in this world; there are so many people who are called “genius,” so many “heroes,” so much “courage” that people forget what these things mean. J is brave; J is very brave. J is brave within the limited framework of what his courage is being tested on, but he also needs a great deal of support because -from time to time- the framework expands, and new things are encompassed by it.
Today is going to be rough because I have to a deep-breathing conversation with J. He DID head-butt someone, and -even though it happened because the BIP wasn’t followed and he was still “in the zone” when they tried to console him- it isn’t right. We have put a call to the doctor and we will discuss with him what to do next. In the meantime, I’ve spent quite a bit of time researching the possible effects of reducing Risperdal, and today’s episode illustrates a few of those. I’ve also studied my notes from June of last year when we had the first reduction, and this is a more intense, more marked difference in behavior than then, but close enough to not send me into a panic…yet.
The situation is as I’ve described it to you, and I’m working on how to address all of J’s needs when he gets home this afternoon. I am working on every angle that might present itself, and I’m hoping that we can ride this transition in med dosage well…but I’m ready to acquiesce if that’s what has to be done for J’s sake. Setbacks are not unusual to us…ricocheting arrows are another story…well, no…not really…in this house even soap bubbles have a tendency to bounce repeatedly and cause chaos…