Response to some thoughtful questions...

It's been a busy couple of days. I received a very thoughtful response to my last post, so I thought I'd respond to some of their thoughts (the response was anonymous, so I don't have a name to attatch to it) in this post, as well as share the latest here in the New Republic...

Anonymous wrote:
"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 teaching in. But his disablility and some of the things you describe him going through aren't unknown to me or my classroom. I could envision 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 think 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. "

Lisa/Jedi:
We are very fortunate to have found an alternative school that believes strongly in individualised education for all of the kids, & is great about including kids with IEPs in as much of the programme as possible. This is about the only school environment that we can imagine Brendan in, since his needs are pretty specific & changeable. His teachers are very accomodating & I must confess that I sometimes wonder when we'll reach their breaking point, but so far so good :) Our involvement, in lots of different ways, at school has helped keep the good will flowing, too. The main problem last Tuesday, as I see it, was that the therapist who came in to work with Brendan wasn't aware of the new box rules, so didn't realise that Brendan felt that he was "supposed" to be in the box then... &, of course, as I mentioned in that post, the whole idea of establishing times when he could & couldn't be in it was counter-productive to the purpose of the box as safe space. As of Wednesday, the box has been re-establised as a place for him only when he's feeling overwhelmed or unsafe, & he has a card in the box to show anyone who wants him to leave it (if he doesn't want to at the moment) that has statements explaining why he's in there. My understanding is that he's hardly needed it at all these past couple of days, which is great. What we often find is that, once he has a safe place to retreat to, Brendan usually doesn't actually have to use it.

Anonymous wrote:
"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?"

Lisa/Jedi:
We are utilising the box as safe space for Brendan at this moment in his life because it's what he needs. I don't expect that he'll need it forever :) We've seen him move through various methods for keeping himself togetherover the years (having his beloved Rufus plushie with him all the time, keeping one of his little pokemon in his pocket..), so this feels like another method that he will use for a while & then move on. One of the biggest difficulties with his learning this year at school has been that he hasn't found anyplace where he feels safe. Last year, on a different floor, there was a great "cosy corner" in the special ed. resource room where he could go if he was feeling overwhelmed. His new floor this year, where the 5-8th graders are, doesn't have the space for such a place, so he's been very uncomfortable all year so far. When Brendan's stressed, he just can't settle down to school work, so until recently he's been taught one-on-one by his consultant teacher in a quiet place away from his class. His classroom teacher has been trying very hard to integrate Brendan into the class, & the institution of a daily schedule with incentives for spending blocks of time in the classroom plus the box have been working well to help him stay in the room. In terms of safety, there's no question in my mind that, in case of a fire, fire drill, or other emergency, Brendan would come out of the box & leave the school with his class. He's always very conscientious about this sort of thing, even though he doesn't like the fuss & confusion. In terms of the other kids, they are actually pretty blase about the box. Thanks to Brendan's self-advocacy the kids in his class never tease him about his sometimes odd or explosive behaviours, & my sense is that they are understanding his need for the box as just another Brendan thing, like his having OT & Speech. There are other special needs kids in his class, but none of them has the need for safe space that he does, so I don't see anybody else clamoring for a box :) I really resonate to your last statement- it's very difficult not to have overly high expectations with a kid with such uneven abilities as Brendan has. It can be discouraging, but I prefer to think of it as the way he is, especially as he does very well when we accomodate his needs.

Anonymous said:
"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."

Lisa/Jedi:
I have tried ever so hard to stay out of the interactions Brendan has with his tic-trigger people. There are just the 2 kids on the floor & I am friendly with both of them, but the one kid in particular makes it difficult, since he seems magnetised to Brendan when Brendan is having a difficult time. I suspect that it's the fireworks display that makes him so compelling :) But I also feel badly because this kid doesn't seem to get it that Brendan needs to be away from other people when this is happening. Sigh. You could say that this kid has just as much right to be in the hall, but is it really respectful to add to the distress of another person if there's a way to alleviate it? Bottom line is that, when Brendan is in OCD mode, he can't bring himself down & expecting him to do so is not helpful at all. I am very proud that Brendan is a good friend with this kid when he's not in distress & being triggered. I have never before asked him to leave Brendan be, but in this instance I just wanted to get my kid out of the building in one piece- meaning, without having head-banged a locker or a window on the way out, as he's done before.

Anonymous finished their comments with some very nice words about the blog & our parental involvement with Brendan & school, & I appreciate these very much, as well as the thoughtful comments above. It really did make me aware once again how fortunate we are to have such a great school for Brendan in our community (10 minutes from our house!).

Today was the first time I went to school to have a japanese lesson with Brendan. I had hit upon this idea last week when I tried to do some work on japanese with him last Friday when he was off school & it became apparent that he was in "home mode" & wanted nothing to do with anything schoolish. He agreed to try working on japanese at school, & so I arranged to go in on Fridays at 12:30, when the rest of his class is having Spanish (Brendan is exempt from Spanish this year because 1) due to some reorganisation they are repeating what he learned in 3rd grade & he was very frustrated by this, & 2) he's taking japanese). This morning, in the brief moments that I was at home (between taking him to school & a doctor's appointment for me) I put together some flashcards with adjectives & generated some sentences to plug them into, gathered some phrases from previous lessons with Tomoko that he's going to need when we go to Japan (like "let's play!" & "I have to ask my mom." :), & found the big card listing all the pokemon names in japanese (from a McDonald's in Japan, sent to Brendan by his penpal Seiji) so he could practise reading the katakana alphabet. I also packed a baggie of japanese candy. Brendan's class was still outside playing when I got to school & Brendan was all by himself, digging a hole in the big pile of snow pushed up by the plow at the edge of the parking lot. He was having a great time, but didn't drag his feet too much when it was time to go in. We had the special ed. room to ourselves, & 45 minutes until the next activity. I told Brendan that we had 3 things to accomplish & that we'd share some of the sweets after we'd done each one (he commented on the cleverness of my incentives :). I asked him which one he wanted to start with & he wanted to work on katakana, so started picking out pokemon from the card that were associated with different teams (on the show) & sounding out their names. The entire 45 minutes passed very quickly & he was focused & interested in the lessons, mentioning that he liked working on japanese at school. Success!

The next activity was supposed to be a rehearsal of a scene from the class play & Brendan was really looking forward to having me see it. With 1 1/2 weeks before the performace there had been a major change in roles & Brendan is now playing the lead character. It seems that the kid who was going to do it was getting really nervous about it & was really relieved when Brendan agreed to switch roles... Brendan already had most of the lines memorised (in previous years he's memorised all of the play so he can help with prompting) & is having a riot with the part- that of a mad scientist :) Unfortunately, just as they had set-up the scenery for the rehearsal, word got out that the 7-8th graders were going to perform their class play for the younger kids & it might be the only opportunity for his group to see their play as well, so the rest of his class opted to go see it.. He was pretty upset & Cherie (His consultant teacher) & I had just gotten him settled down with the promise of helping her do the sound-effects for a rehearsal of the other 5-6th grade class's play when they decided to go downstairs to watch the older kids as well. Brendan freaked. It was just a bit too much transition for him. Cherie & I stayed with him, acknowledging his distress & all the last-minute chaos. (I got a really nice, apologetic email from his classroom teacher, too.) We finally helped him calm down by talking about how we can help Cherie come up with a last few sound effects needed for their play (the sound of a key turning in a lock... a body being dragged across the floor... ?) by recording various things at home. He got interested in figuring it all out & we left school to go pick up some more blank cd's.

This afternoon we watched some InuYasha & Brendan played outside for quite a while. The snow persists nicely & maybe he & dad will be able to go sledding this weekend...