Mental crutches...

First off, here is the wizard "Glacius" :) Brendan was really pleased with how his wizard robe turned out, & when I asked him the name of the wizard he's pretending to be, he told me it was Glacius & then provided a half-hour-long monologue on Glacius' origins. We have since turned this into the seed for dad's birthday present & I spent the better part of an hour yesterday scribing the first chapter of the first book about Glacius' life. I think Charlie will be pleased to receive it, & it's fun to get it all on paper (uh, laptop :). Makes me even more anxious to get the voice recognition software going for Brendan. He sure is having a great time wearing the robes around the house & is now thinking of appropriate embellishments for his staff...

I think that one of the hardest things in the world is to drop a well-functioning kid off at school & pick him up at the end of the day a quivering mess... sigh. It would seem that we are on a shake-down cruise when it comes to Brendan's box, with lots of chef's stirring the broth & the attendant difficulties. When we first got to school Brendan's teacher, Jen, wanted to figure out some rules for the box- essentially, times when it was ok for him to be in it or not. Cherie & I were a bit concerned, since the purpose of the box is to be a retreat when he can't cope with things, so I asked Jen what he should do if he was feeling distressed & needed to get in the box in a non-sanctioned time & they figured out a hand-signal for Brendan to use (he loves that sort of thing). So far, so good. Then she wrote the times that she felt it was ok for him to be in the box on the corner of the whiteboard & showed them to him. Again, I was a bit concerned, but she was clearly feeling that boundaries needed to be set, & didn't want to have to interact with Brendan about the box (for some reason) with the other kids there. I guess the morning went very well, which was no surprise, since when I left him he was sitting at his desk doing his morning work. That Brendan can sit at his desk & work is a sure sign that he's feeling comfortable & well-regulated.

I got a call from his speech therapist (who sees him every day at school) around 1:30- she wanted to fill me in on the disastrous afternoon so that I would be better able to pick up the pieces when I got to school... I guess he was eating lunch in his box when she arrived to do a lunchtime stint with him (to assist with socialisation) & he really objected when she asked him to get out of the box. She had 2 main concerns at this point- that he was eating lunch while lying down (with the potential for choking- something we hadn't realised & a concern I share!) & that he should be spending his lunch time socialising with the other kids. Ahhh, but you see, his teacher had written on the board that lunch time was one of the times he could be in the box... so Brendan erupted in distress at his therapist's request to leave it. He was so upset that he hid twice on them (once they almost called me at home because they simply couldn't find him, but he heard them talking about calling & came out before the call was made), missed outside time (which he'd really been looking forward to) & music class (which he often enjoys). There was concern that he might be retreating to the box just for fun or to isolate himself, rather than using it when he really needs it, & I know he was really angry & upset, with resulting unpleasant behaviour. Here's the thing, though, I believe that what really went wrong was the attempt to regulate his safe space, which in essence, made it unsafe (his own words). Certainly, when I got there, Brendan wasn't angry at his therapist at all (the person who had asked him to get out of his box in the first place), but was really angry with his teacher. He admitted, tearfully, that he'd erased what she'd written on white board, about when he could go in the box. I sensed he was feeling betrayed. I also sense that there's something else going on, from his teacher's point of view, that we aren't aware of yet.

Getting Brendan out of the school building in his state of agitation (remember that he'd been in distress since noon-ish & it was now 2:20-ish...) approached a comedy of errors, without the comedy. While getting his coat & boots on at his locker, the boy in his class most likely to trigger Brendan's tics came out to his nearby locker, saying that he needed to get his stuff (although nobody else was getting theirs together). This kid seems magnetised to Brendan when he's in distress & we have trouble redirecting him away from Brendan, who only freaks out more when he's nearby (when Brendan's feeling fine they are good friends...). I finally explained that Brendan was upset & could he please go back into the classroom until Brendan calms down, to which he replied "tell Brendan goodbye for me" (which, perhaps irrationally, I find irritating because it feels like he's treating Brendan like a sick person...). Then, with coat & paraphenalia in hand, Brendan & I headed for the door only to have the other kid who triggers Brendan waft by... Cherie was with us that this point, signalled the potential trouble to me, & I wrapped my arm gently around Brendan's head & led him out the door to the stairs, so he couldn't see the kid. It was like running the gantlet... Cherie was very sweet & empathetic & wished us a better afternoon. She & I had chatted before going in to get Brendan & she understood my concerns about the attempt to regulate Brendan's box usage (Jen had not discussed any of this with her before approaching the subject with Brendan that morning). We agreed that we need a mini team meeting to sort it all out.

So, here's the thing- it seems to me that Brendan's major life-work these days is self-regulation- learning to take his internal, emotional pulse & then behave accordingly (& appropriately, in all senses :). It's not an easy task for anyone, but for a 10-year-old with lots of neurological differences, it qualifies as major work (in my opinion). So, to try to regulate Brendan's box time seems to me not a good way to help him learn to self-regulate. When Cherie & I were talking, it seemed to me that one of the issues was that no one could be sure if he was using the box as he really needed to, or if he was hanging out in there as a cop-out, to avoid interacting with others. This really got me thinking about trust. On one hand, we have a kid who is still learning how to figure out what's going on inside himself, so, yeah, it's not easy to trust that he's acting out of true need. He's also a 10-year-old boy, who is (autism stereotypes aside) perfectly capable of bullshitting the unwary to get his own way. He is also someone with some severe impairments in his ability to cope with the world around him, & no matter the flashes of brilliance we see from time to time, he needs a lot of support. The whole box thing evolved as a way for him to have necessary support in order to function at school, but it's clear that we're not all on the same page concerning how it can support him. I'm wondering, too, how much his "flashes of brilliance" may sometimes shoot him in the foot by making him appear much more capable than he is. One of the joys of school these days if the class play & I have been really enjoying the almost daily reports of Brendan's accomplishments. His teacher says he is a brilliant actor, she's just in awe of him. I love it- I love having a brilliant kid. But I'm wondering if this contrast in abilities is making it harder for folks to understand/imagine his intense needs, too.

So I started thinking of ways to imagine the box... & came up with the image of crutches. This hearkens to recent discussion in Kristina's AutismVox blog about autism not always being an obvious disability & reminds me of chats Brendan & I have had on this subject. When the OCD & Tourettes began to make Brendan's behaviour in public significantly different (as in outre), we needed ways for him to understand that he was the same ok person as before, so we started imagining how life would be for a kid who is blind or in a wheelchair, someone with an obvious disability. We talked about how his differences are just as real as a child's whose difference was obvious, & that any person with a difference is a valuable person. From time to time we've revisited the subject, especially when Brendan's been feeling bad about the tics. It's not easy for a kid with an "invisible" disability, that causes him to be obviously different in a way that is misunderstood by most people. So it doesn't seem so farfetched to imagine the box as a visible sign of his differences, "mental crutches". And, actually, by imagining the box as an important support, I can also see some of the difficulty it brings with it. We, as a society, are conditioned to see crutches as bad, as the need for a crutch as a sign of something wrong with the person who uses it. Wrong- bad. This is a powerful & pervasive stereotype. I know because I used crutches & a wheelchair for most of my teens & up into my mid-twenties. I lived it, & any time I have had to "regress" to using a cane or crutches it has been overwhelmingly seen as a bad/scary thing (to everybody but me). The thing I learned is that for many, many people crutches represent freedom. It allows them mobility. Crutches=good. It seems paradoxical to general society, but there it is. So, by extension- box=good!

This morning Charlie took Brendan to school. He & I had brainstormed last night some responses to yesterday's events. Brendan was nervous this morning- he was afraid that he'd do something "wrong" again & have another rotten day. I told him, honestly, that I didn't think that he'd done anything wrong (except to scare his teachers by hiding). I told him that the box is a new thing, & he supplied the corrolary- "& with new things there are troubles." I told him it was a shake-down cruise, like on a new boat, & we had to work out all the kinks. Charlie had suggested putting together a card with statements like "I am in the box because I feel distressed." & "I can eat lunch in the box if I am sitting up." & "I will come out of the box for OT & Speech unless I'm really distressed." that Brendan can carry in his pocket & show to anyone who tries to get him out when he feels he needs to be in it. I also explained the trust issue to Brendan, by mentioning that people can't read each other's minds (we agreed that was a good thing :) & so it's hard for his teachers to know if he's in the box because he needs it or because he's just trying to avoid people. He asked me which was wrong (!), so I explained that they really want him to do his best & be with people as much as he can, & only retreat when he really has to. I also said that I thought that his being told when he can go into the box was not a good thing & that we are hoping to re-establish it as his safe place. I also mentioned the crutches idea to Charlie, just so he'd have it in mind when sorting things out at school this morning. I told Brendan that he can always call me at home if he needs me, & Charlie said he'd ask the folks at school to call if things got out of hand again.

When Charlie called to let me know how things had gone when they got to school, he said that everybody seemed to feel bad about yesterday & understood that rethinking was necessary. The card idea was immediately approved, & Charlie left them writing out the statements on a 3x5 card. Brendann seemed comfortable & engaged. Whew. Charlie warned me that I might not see them for a while after school :) There's birthday shopping to be done- next week is birthday week! Charlie is the 6th, I'm the 7th, Grammie is the 12th, & my best friend Roo is the 17th- so if Brendan's in a good frame of mind they will head out to shop & then perhaps stop by Charlie's office to check out his new voice recognition software (to use for dictating) &, essentially, whet Brendan's appetite (or test the waters). And, now, I must get to my own preparations for Charlie's birthday, with one ear listening for the phone, of course... :) And, finally, at mcewen's request, a wintry picture of the house (to be looked at while snug & warm).