Friday, April 27, 2007

Rhythms of life...

Well, I think that last post really took it out of me... kind of like I've been sucked dry of words. Life is still happening, though. Brendan's had a tough week, with many of the "issues" being very much related to the "gap". My sense is that he tootles along at school pretty well for a while & then, bam!, life expects a bit too much of him. Yesterday afternoon, when I went to pick him up from school, I sat in the parking lot & waited for him to come out (as usual) after waving to him in the 3rd floor window outside his classroom. I waited... & waited... finally I saw him again, with Cherie, talking. He looked rather miserable. I thought I saw him bang his head on the window & decided to get out of the car. Cherie indicated that I should come up. The scenario turned out to be: Brendan saw me in parking lot (at the agreed-upon time), went to get his stuff out of his locker, was intercepted by his classroom teacher & asked to do his pitching-in job (I guess things went late, because they're usually done by the time I get there), & Brendan freaked. Looked at from his point of view, I understand perfectly why he freaked. To my mind, you don't ask a kid with autism to delay end-of-the-day gratification (mom's here. going home!). To his teacher's mind, I suspect, a kid who attended really well in math class & had no trouble today in music class is not triggering "autistic" in her mind, even though she's completely on board with his autism & his needs... So she asked him to do what the other kids were doing. When I spoke to Cherie (Brendan's consultant teacher) this morning I told her that Charlie & I were thinking that one last team-meeting might be a good thing, just to get us throught the last 6 weeks of school. Brendan's changed so much since the winter break- it'll be nice to speak of these things & get everyone on board for where he's at now. In other words, let's get all of his teachers & therapists up to speed with the gap so that the great progress he's been making isn't undermined by escalating expectations. Cherie thought that a meeting was a great idea & will find us a time. The truth is, I read so much dreadful stuff in other parents' blogs about their schools' attitudes towards their children that I feel a bit guilty kvetching even a bit about things like this... Brendan's school & teachers are stellar. And part of the reason is that they're so open the the occasional tweaking necessary to keep things running smoothly.,,

One of the things complicating matters at school is Brendan's circadian rhythms, life-long ones, for up-times & down-times. The down-times make him particularly vulnerable to the OCD thoughts & tics, resulting in fatigue, & circularly, less patience with the OCD. He's in a definite slump right now, so it's been important to structure his downtime as true downtime- no demands. I had been thinking of doing some cleaning in his room with him (gotta make room for all the birthday legos) but realised that there was no way he'd be able/want to participate. I thought about it & realised that re-organising things wasn't going to upset him (re-binning the legos in a logical fashion so that they're out of the way & easier to find), so I went ahead & did it this morning. It was good for me, too. I've been leaving school lately rather depressed, worried about leaving Brendan & about some other things, too, so having a definite, ultimately satisfying job to do really helped. I'm looking forward to showing him what I've done, & seeing what he thinks of actually being able to walk through his room without tripping :) (I'm anticipating a positive response...)

After tidying, I moved on to blog-reading & found myself crying over Estee's recent post (guest-posted) called When What Seems Broken is Perfect (the link to that particular page wouldn't come up, so I had to link to the site instead). It made me think of some of my fears about how my child's life is seen & valued by those outside my family... Happily, I also took the time to listen to the Revolution Health podcast that Kristina posted yesterday at her Autism Vox site- a conversation she participated in (along with some other well-known autism blog voices, such as Autism Diva). It was a great listen & heartening, to boot. Well worth the hour-ish (I didn't time it) of time (I knitted some & braided a headband :).

The weather has been more co-opertive than expected (it was supposed to rain all day, but it's beautiful & sunny right now), so Brendan & I should be able to have what's become our daily walk. He's been quite enthusiastic about walking around the block with me for the past week, so we have good momentum to continue :) It's a great thing for both of us to be doing. We're looking at another really full weekend- japanese lesson, work day at the sailing club, then on Sunday church for all of us & a tea party (school fundraiser) for Charlie & me (Brendan is happier staying home with our goddaughter). It'll be good to have things like going for a walk to anchor us to everyday life.

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At 1:13 AM, Blogger kristina said...

So glad to get your feedback on the Revolution Health interview---I was honored to be included.

Looking forward to the report from your weekend (yours are as full as ours----how we'd love to go sailing!). It's meant so much for me to read about Brendan here; I can see how he's grown in understanding about so much since I started reading----and reading about this has helped my understanding.

At 7:56 PM, Blogger Lisa/Jedi said...

Thanks for the kind comments, Kristina. I forgot to mention in my comment in your blog that I enjoyed hearing Charlie warbling in the background. :) It has been wonderful to find such online friends as you for mutual support & comfort!


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