Wednesday, March 14, 2007

New food, developments, & braces!

Hi. I'm back... Blogging for me seems to be a repetitive process of getting into "the groove" (keeping up with the flow of life & reflecting it in regular blog posts) & then periods of hiccuping through, trying to capture snapshots as life whizzes by... I am in hiccup mode these days & have found that, although it's uncomfortable to settle for posting snapshots of life, it's the only practical thing to do & I'm going to have to be satisfied with it. I have been thinking a lot lately about some of the deeper underpinnings of society's attitudes toward people who are different & at some point it's all going to gel in my mind when I actually have time to post it... but for now it's going to have to stay put. Sigh.

Brendan's been off school, yesterday & today, for family-student-teacher conferences. Yesterday we bopped out briefly in the morning to the asian food store & office supplies store to pick up some things. I had expected Brendan to want to stay in the car while I went into the asian food store because he usually can't handle the smell (lots of fishy overtones in a rather dank, warehouse-y building) but he was interested in looking for okashi (snacks) so was eager to go in with me. His only bad moment was running into (not literally) a cooked duck hanging in a corner, but he was able to go somewhere else in the store & didn't need to leave. We had to find non-gum or -chewy type snacks, which wasn't easy, but he found some konpeito & thought they would do :) (Konpeito is the bumpy, colourful sugar candy that the soot sprites are fed in "Spirited Away".) We talked about tolerance for those who eat meat on the way home in the car... which was interesting because Brendan decided that he wanted tuna fish for breakfast that morning. He hasn't eaten tuna for years. He has, however, assured me that it's ok if I eat fish or seafood around him, which relieved me considerably about travelling to Japan, since we're more likely to encounter fish & seafood there (Brendan can't bear to be in the room if someone is eating other animal products & even refuses to eat tofu products that are shaped like meat products, like veggie burgers). On Monday Brendan had earned a pokemon plushie from the new Diamon & Pearl series that is a penguin (whom he's named Linus) & yesterday morning he told me that Linus wanted tuna, so he'd like to have some too. I convinced him to hold off on the tuna until lunch time (I was trying to get out of the house early to run our errands) & so when lunch rolled around I made him a tuna salad sandwich. He loved it (so did Linus). So, I told him I'd make tuna onigiri for dinner & see if he liked that, too. Onigiri are japanese rice balls, a staple of box lunches there, but Brendan's never liked them with with any sort of filling & I'd been worried about finding any that he'd eat when we're in Japan this summer. (On a side note, according to our japanese teacher, the best place for take-out onigiri in Japan is the local 7-11 (yes, they have 7-11's in Japan). Tomoko says they take great pride in using the best quality rice & fresh fillings... something we're just going to have to experience, I think :)

We had a pretty mellow afternoon- we designed his birthday invitations using an image from his AQ online game- & when dinner came around I made tuna onigiri for Charlie & Brendan (I have really neat onigiri moulds that make the process go alot quicker & are less messy) with edamame on the side & tamagoyaki (rolled sweet omelette) for us parents (I had temaki sushi- yum!). Brendan ate all of his edamame first & then sat with an onigiri in his hand, breathing deeply. I encouraged him to "just take a bite & see..." & he told me he was preparing himself (new food is never easy...). Then, he bit into it. And he loved it :) He so rarely even tries something unfamiliar so I really savoured the moment. It's a lucky thing that we got him started early (as in, as soon as he started eating solid food) with japanese cuisine, or he wouldn't be eating it at all...

Today Brendan's school conference was at 8:50 am, so we got up nearly as early as a regular school day. Charlie got home from doing some catch-up at work as Brendan & I finished breakfast & we all hopped in the car to go to school. In preparation for the conferences all of the kids had done self-assessments & I always look forward to hearing what Brendan has to say. I also remembered that it was reading the assessment that had been partly-scribed for him last fall & seeing the contrast between what he'd been able to write & what he'd said to the scriber that led us to begin looking into voice-recognition software for him. That definitely came up in the conference today & we were glad to be able to report that we are finally ready to order the software & the laptop necessary for him to use it. (This will bring the number of working computers in our house to 5... deranged, but true. You would think that we might find a suitable computer from the array already available, but Dragon won't work with any of them for various reasons...) Brendan read his self-assessment (scribed for him, so it was full of interesting things) & commented on it as needed. One thing we all found interesting was that he prefers to work in groups of kids (as long as he doesn't have to do any writing), rather than alone because when he's in a room of students working on their own he feels an atmosphere of competition. When he's working with a group of kids he gets a feeling of co-operation. Charlie snagged a copy of Brendan's self-assessment to give to his psychologist, whom we were going to see at noon. When Brendan ran out of things to say he left the room & we did the grownup part of the conference. His teachers are very pleased with his current level of functioning at school. They moved desks around in the classroom a bit & found just the right place for Brendan's desk relative to the blackboard so that he can concentrate on his work without too many distractions. His big box has also helped enormously, since he can retreat to it & regroup when feeling overwhelmed. His teacher says he uses it a lot, but I didn't get the sense that he was in it during lesson times or that it was interfering with work time. He has also been much more fluent about telling his teachers when something is giving him a tic (triggering an OCD thought) so that they can modify things before he melts down from distress. So his days are less full of emotional explosions & he has more energy for school work & fun. We ended the meeting by thanking them very much for their flexibility & creativity in working with Brendan. So many of the things I've been reading lately highlight how lucky we are to have such a school in our community, which is not dedicated to serving kids with special needs but whose focus on alternative education provides him with teachers who are dedicated to helping him learn in the best way possible. They replied by telling us how much they enjoy Brendan as a person & how much he brings to the class. :)

The next event after school conference was the arrival of Grammie to stay with Brendan while Charlie & I went to see his psychologist for one of our regular meetings. I showed Grammie the chewy tubes that arrived on Monday, to be used instead of gum for Brendan's oral-motor/sensory feedback needs from now on... Luckily Brendan was on the computer when I did this because she was a bit puzzled by the tubes (& maybe my excitement?) & asked if they were like a pacifier. I kind of laughed & then asked her not to say that in front of Brendan... Later Charlie & I reflected on how well-thought-out plans could be destroyed by a single word & how lucky we were he wasn't around to hear the word "pacifier". Sigh. It also made me realise that I definitely live in an odd little world, where it's perfectly ok for nearly 11-year-olds to need chewy tubes... because, of course, is is ok (& necessary). We had a very productive meeting with Dr. M & he gave us some ideas for strategies to help Brendan transition to wearing the braces, particularly if he continues to have trouble keeping foreign objects out of his mouth (which is currently a problem). It's very clear that we will have to rethink how we do things at home until the transition has been made, & that Brendan will need more monitoring than he's required for quite some time. So he's not the only one who will have to learn to do things differently. Another thing we talked about was the way we've been approaching how to help Brendan learn the social skills he needs. Dr. M was pleased that we've evolved a strategy of talking about this sort of learning as getting "information" about things, rather than viewing it as coaching or getting help. He said that by speaking this as information-gathering we are not only piquing his interest (because he loves information) but empowering Brendan to learn how to do it himself, rather than teaching him to depend on others. It's a subtle difference, but affects how he views himself & his own capabilities. At these appontiments we always get positive feedback as to how Brendan's doing developmentally & it is always nice to know the ways that he's right on track for his age, rather than the focus always being where he's not doing as well... Brendan's recent interest in earning money is developmentally spot-on & is to be encouraged, we discovered :)

The final appointment for this busy day was with the orthodontist to begin the braces process (!). Brendan was a bit flakier than he's been at past appointments & had to be brought back to topic repeatedly (they did a thorough job on what foods he must avoid, how to eat others, & how he'll have to change his present methods for toothbrushing, flossing, & flouride rinsing). He was very pleased with the new water bottle he was given (as a treat :) & the dental mirror of his very own to use to keep track of the spacers that they put in today. He was really captivated by the mirror & was able to find all of the spacers with a little help from the technician. We checked-out using the chewy tubes to replace gum in Brendan's life (they hadn't heard of them) & after I explained how they work we got the ok... whew!! As it turned out, he only needed 3 of a possible 8 spacers, & although he complained that they made his teeth feel weird, he was barely noticing them by the time we left. I am worried by how he'll do once everything's actually in his mouth. We'll have to check his lips regularly to make sure the braces aren't abrading too much & giving him sores. His pain threshold is very high & I'm not convinced that he'll catch any abrasion before it's really bad. And we're really going to have to think about what he's eating & how. As I mentioned above, we're going to have to change our habits as much as Brendan will have to change his. It makes me realise what a creature of habit I am... On the way home we brainstormed a list of Brendan's friends that have braces already, so that he can ask them questions & get ideas for coping strategies. He's still pretty excited about it all &, I think, liking the extra attention :) Hey, if you've got to put up with all of this, feeling special is a nice perk!

Back to school tomorrow...!

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At 7:43 PM, Blogger mcewen said...

Poor Brendan has to have American teeth too? He has my deepest sympathies.
As for 'bopping' anywhere, that's a new one to me. 'Bopping' was something you used to do on the dance floor of a disco or alternatively a form of corporal punishment. [limited to the cranium] Nevermind, I love having my American vocab expanded!

At 7:58 PM, Blogger kristina said...

I think Charlie would want to try everything you cook----though he tends to like his edamame frozen. I don't know when Charlie will be able to be at a conferes with us; it's very encouraging to hear about Brendan at his. Bravo!

At 10:26 AM, Blogger mumkeepingsane said...

Thank you for this snapshot into your lives. You've given me some very concrete ideas for some issues I'm having with both my boys.

At 1:44 PM, Blogger Lisa/Jedi said...

Thanks for the kind comments :)

mcewen, you remind me of the frequent communication confusions I had with my Canadian cousins while growing up- hilarity often ensued as we all had our vocabularies expanded!

Let me know if you're ever in upstate NY, Kristina. I'd be glad to cook for you & your family :)

I'm glad you found some ideas here mumkeepingsane. I have gotten so many ideas & inspirations from other parent/autistic adult blogs- I don't know what I'd do without you all!

At 9:24 AM, Blogger MOM-NOS said...

Hi Lisa/Jedi - I got an e-mail today from a mom whose son is 10 and was just diagnosed with autism. Her description of him reminded me of Brendan, and I was wondering if you'd be willing to pass on your e-mail address so she could contact you directly. If you send it to me - momnos at gmail dot com - I'll pass it on to her.


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