Wednesday, January 31, 2007

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).


At 11:24 AM, Blogger mcewen said...

The box/crutch issue is not an easy one to come to terms with, neither is the mismatch between 'brilliant child with sparks of visible brillaince' v the meltdown / shutdown of a 5 year old.

Lovely American house with snow - Horray!

Let me know how you get on with the voice recognition software - an expensive mistake for us - doesn't recognise mine [which I can forgive] but doesn't recognise either of their's either [too nasal / too slow with unexpected gaps in the wrong places and all the other speech delay stuff] I blame the accents not the speech delays!

Why is your house floating - does it worry you at all?

At 1:39 PM, Blogger Club 166 said...

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.

Do all teachers go to the same classes on dealing with kids on the spectrum?

This is almost exactly what happened to us almost a year ago with our now 7 year old son.

He was receiving "individualized instruction" from a parade of teachers and therapists (often 7-8/day) who would come into the resource room to "instruct" him. They had made up a schedule, with two "free art" periods scheduled (one in the morning, one in the afternoon) for Buddy Boy to decompress a little. He REALLY looked forward to these times, and they were a good motivator to get him to cooperate with many things in the schedule he didn't want to partake in.

Well one of his "teachers" comes in when he has 10 minutes left to his 15 minute free period and announces that it's time to do something else. And persists when he announces that it's his art time. Of course, and predictably for someone who has troubles with transitions (much less anyone else, for that matter), Buddy Boy loses it and has a terrible time for two hours, after which his mom has to come and pick him up.

Of course the next day it's all about talking about how to "control" Buddy Boy better and get him to be more flexible, rather than facing the fact that they had totally dropped the ball and needed to look inward for someone to blame and change.

At 7:06 PM, Anonymous kristina said...

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.

Ii had to highlight those sentences too. Makes me think that it's hard on Charlie---on our kids---to find themselves so able one moment, and then in humdrum or distress.

Keep thinkig creatively, as you do so well!

Our our house bears not a little resemblance to yours...

At 8:30 PM, Blogger Lisa/Jedi said...

Thanks, folks :)

I do wonder how Brendan feels to be hailed as a wonder at one point & then in extreme meltdown distress, all in the same day. I know I'm pretty exhausted when I have "one of those days" but he rarely shows cumulative effects... perhaps a good side effect of living in the moment.

To be fair to Brendan's teacher, she's had a really rough year so far, struggling with one of his classmate's exteme behaviour issues, so she's not thinking on her feet as quickly as usual. This classmate was recently asked to leave the school (a pretty rare occurance) because the family would not support the teachers' efforts to help this student, so the whole class is adjusting to the change. It was one of those situations where we felt strangely conforted to know Brendan's behaviour was not the most difficult she had to deal with... In general, Brendan's school & therapists have been amazingly creative & accomodating this year.

Gotta love these Northeast US Colonial Revival homes (even when they look as if they're floating- foam instead of snow, or is it the post-surgery painkillers, mcewen? :).

At 11:37 PM, Anonymous Anonymous said...

I love to read your blog, and try to make time for it at least every other day. This particular one speaks volumes to me, as a special educator. I am left a little perplexed at some of the issues you guys are having to deal with. I thought the other day, when the box went to school, that this might cause problems. Certainly, your son is an enviornment that I am not used to teahching in. But his disablility and some of the things you describe him going through aren't unknown to me or my classroom. I could invision the box being a negative thing because of these very reasons you've talked about. On the other hand, you bring to light a very good way of looking at it, with the whole "invisible disability" thing. That makes a lot of sense to me, and I am also left wondering which it is, based on the information you have given. I thinkt that his teachers have been way more accommodating with having a big box like that brought in and new rules to establish than most teachers I interact would have been. It is totally uncalled for when another professional enters the situation and second guesses what the first professional has decided, in front of the child and by doing it in a way that causes this big of a deal. She could have just gone away or interacted with him in a different than planned way instead of trying to "make" him come out of the box when he thought he was ok in it. Later, she could have addressed her concerns. So, I'll have to give it to the classroom teacher for not becoming very ill with her.

This is my problem with the box. Will he have this box as a "safe place" every where he goes? What happens when all the other children in the classroom decide they need boxes for whatever reason? What happens in case of an emergency when he won't come out? As a teacher, this would be my thoughts on having a box brought in and used as a safe place. So those are things that you might want to consider when thinking of "safe" alternatives. On the other hand, which is the whole point of my post, you have left lots of thought provoking things running through my mind. Have I ever discouraged something that would have been right for the child just because of an "invisible disablity" or how many behaviors could I have decreased by simply accepting an idea like this and incorporating it's use, but didn't just because I thought the student to be too brillant to be getting in a card board box?

Then I think things like the kid coming out in the hallway when he was trying to get his things from his locker. My initial thoughts on this is to think that each boy has just as much right to be in the hallway as the other one does. And that one needs to be able to deal with the other being there some other way than by one not being allowed in the hallway. But then I think back to all the posts I've read and all the distress that is caused simply by not removing one of the children (whichever one) from the situation. And I think again, have I ever thought this before in a situation and caused way more damage than good? I can probably answer that question myself.

I admire your presistence with your son and all you do for him and how involved you are with him and every aspect of his life. I so love the way you make lists of activities to keep him busy on off days. I myself tend to get a little "off" on off days or during breaks and have difficulties being out of the normal routines. For you to be this creative with your son's disability is amazing to me. I can honestly say that I've never had a parent of a student be as in to things as you seem to be and it makes me kind of jealous. I wish I had parents like you to work with.

I enjoy reading and am beginning to learn more about myself as a teacher from your words. Please keep on keeping on. Don't give up. I am sure the answers will come. Again, thank you for the time and effort you put into to sharing your family's journey. I am sure that I am not the only one touched, blessed, and educated by it.


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