Wednesday, May 30, 2007

Life phases...

So much has happened in the past, nearly 2 weeks since I last posted, so I'll try to capture some snapshots of what's been happening...

I'm still recovering from bronchitis & resting whenever I have a couple of moments. The nice thing is that, no matter how rotten I've felt, I managed to to what needed to be done & have some fun as well :)

Brendan & I have finished reading "The Dharma of Star Wars" as bed-time reading- I think it took us about 3 weeks to get through it. Brendan's ability to cope with the OCD, tics, & frustration have changed remarkably in these 3 weeks, & we're noticing the changes at home as well as at school. At school, Brendan's not being triggered as much by OCD thoughts, & when he is he can think about what to do about it much more easily than before. He's using his box only when necessary & he's told me that he's been practising his breathing when he's in there. What's really remarkable about all of this is that this is Brendan's most stressful time of year. Last year we had him seeing his psychologist twice monthly (rather than the usual once monthly) to forestall coping difficulties, since the two previous years, just at this time of year, he tried to "zap" himself at school (by putting things in electrical sockets) because he was in so much emotional pain. It's also possible that getting ready to go to Japan is channeling some of the end-of-school transition issues into thinking about our next adventure. But it's certain that the mindfulness practise is helping, too. At home. the biggest change is that we've been able to get rid of his evening dose of klonapin, which he used to need to help buffer him from overwhelming OCD thoughts at bed time. Now what we do, if the thoughts start getting to him, is set a "kekkai" (japanese for "barrier") using "ki" (life-force energy). I start setting it around his head & Brendan uses his own ki to meet it. I can feel when he's pushing at my part of the kekkai- it's pretty amazing. Brendan immediately becomes calm again when we do this & we're finding it helpful to do during the day as well, when the thoughts overwhelm him. I still can barely believe that we've been able to move to this technique & back off on the medicine. It really bodes well for the future :) The other nice thing about the mindfulness practise is that we've been egging each other on, which has been a nice way for Brendan to find himself on an equal footing with me. I'm still "the mom", but he can remind me to breathe, say when traffic's really hairy, & it's helpful to me. He's coaching me just as I've been coaching him for most of his life. I know he gets a kick out of that... & I'm definitely benefitting from the practise as well.

We said goodbye to Nobuko-san, our japanese teacher's mother, yesterday. She flies back to Japan tomorrow, but we'll see her in a few weeks when we go to stay with her in Japan. Brendan finally found the courage to say a few things to her in japanese & it delighted both of them. She seemed really fond of him & also charmed :) I became quite comfortable with her & really enjoyed sharing everything from dyeing with indigo to visiting a quilting shop (they don't have anything like it in Japan) to showing her my wedding dress, which I designed & crocheted all of the lace for (a blast from the past :). She has promised to teach me a type of tea ceremony that's performed at the table (rather than sitting on tatami mats on the floor) &, much to Tomoko's chagrin, happily showed me a very elegant way to pick up & put down my hashi (chopsticks) during a meal (this while eating lunch together at our favourite japanese restaurant). I was so happy that she wanted to teach me, & I can't wait to learn the tea ceremony!! Tomoko also let us know that the plans for visiting her nephews' school are solid, & that we'll be participating in an english class, plus observing another subject, & then staying for lunch if we like. Lunch in a japanese elementary school is supposed to be amazing- the kids serve it all themselves- so I think we'll take them up on it. Brendan & I have picked out the photos we want to use for a picture-book of his life here in the US, so all we have to do is set it up with english & japanese text & print it out. We plan to give it as a gift to the schoolkids we'll be visiting, to help them learn english & about life in the US.

Part of the end-of-school scene, always, is Brendan's yearly CSE. This year the special ed. co-ordinator at school requested to have all of the city students' CSE's at school, rather than downtown at central office, & they actually agreed! It makes things so much easier on the teachers & the school, since they can just hire a couple of subs to rotate through the classrooms as the teachers attend the CSE's. It always seems a lot friendlier to have it at school (previously only one of Brendan's has been at school & it was far & above the most productive), & this one was truly friendly... it was almost embarassingly so... Brendan's meeting was scheduled last, at 1:15, since the school folks thought we could use a full hour for his meeting (the rest were 45 minutes). Charlie had cleared his schedule to attend & both his speech & OT therapists had multiple kids at school who had meetings that day, so they spent most of the day there at meetings. In all there were 8 of us at his meeting, the chairperson & Team Brendan :) We all had the proposed IEP in front of us (thank-you, IEP Direct!- & Cherie, Brendan's consultant teacher :) & the only change being proposed was to provide him with a laptop with Dragon, voice-activated software, at the beginning of the year (& to withdraw the request for the alphasmart keyboard, since there are computers at school he can use if he wants to type something). Brendan's classroom teacher, Jen, has a lovely way of beginning with the positives- perhaps not the best thing to do when you are trying to make a case for services, but psychologically much more civilised. She was very clear that Brendan has some pretty impressive difficulties with functioning in the classroom & at school, but that he's also a delight to be with, that he's bright, witty, interesting, &- when functioning optimally- a very positive influence on his class & schoolmates. It's so wonderful to hear such nice things about your kid... Brendan's challenges were stated, too, but I have to say that his sense of humour permeated the whole meeting (even though he wasn't physically there), which was punctuated by explosive laughter at times. The CSE Chair was very pleasant & very impressed by the examples of Brendan's work using Dragon (part of the trial to see if it should be added to his IEP). She was also very encouraging to Charlie & me, & impressed by the work everyone at school has been doing with him. Needless to say, the request for Dragon was approved & there were no challenges to any of his existing services. We officially requested that Brendan have the same OT & speech providers next year, too, since they have been stellar, so... fingers crossed... After the meeting, as Brendan & I were leaving school, we popped back into the meeting room to see if the CSE Chair was still there, because I really wanted her to meet Brendan. She was there, & seemed quite delighted to meet him. Brendan was his charming self :) So- another CSE done & on to 6th grade! Even Brendan has decided that next year is going to be a better year... don't you just love it?

The other interesting thing that's happened over the past week is that Brendan has become a fisherman... He had a taste of fishing when his class went on their camping trip a few of weeks ago, & then had another opportunity this past Saturday when we hosted a school fundraiser at our sailing club. It was a sailing/picnic day & one of the families that signed up was that of one of Brendan's classmates, an avid fisherman, with an avid fisherman dad. Brendan spent the whole afternoon fishing & they even caught a fish that they couldn't identify (these folks are serious...) so they all hopped in the car & took fishie to the local tackle shop, where they had to put a call into authorities in order to figure out what it was (turned out to be a very rare bowfish- Charlie googled it & it was a very interesting read). On Sunday Brendan mentioned in Sunday School that he'd fallen in love with fishing & was invited to spend the afternoon fishing a local canal for carp with one of his classmates, whose dad is one of their teachers. He was in heaven :) It was a very odd afternoon for us, since we were strangely kidless... This is not something that happens to us very often, since there aren't very many folks who are comfortable enough with Brendan (& vice-versa) to blithely spirit him away on a fishing trip... We've known this family for quite a few years & the dad has been their Sunday School teacher for about 4 years, so it went very well. By Monday morning, Memorial Day, it was obvious that Brendan needed his own fishing tackle, so Charlie took him off to the tackle shop, conveniently open, & then directly to the club for an afternoon of fishing. As soon as the first fish was caught & needed to be thrown back (we aren't eating these guys- nobody wants to clean them!) they realised that they had no pliers to remove the hook, but a friend who was down for a sail came to the rescue & taught Charlie & Brendan a bit more about fishing. I think it's utterly cool that Charlie, who has never had any interest in fishing, is right there with Brendan, dealing with untoward bait situations & hanging on to wriggly, muscular critters like a pro... They ended up going twice on Monday (once after dinner, too)- true dedication :) Today they planned to go after school & pick up a net on the way, since there is always the possibility of catching a big one. They were gone for about 3 hours & got home just before dinner time. When I saw the net they'd bought I went into in hysterics- the thing could land a shark, I swear. Charlie insisted that it was the smallest one they had... Brendan got contact giggles from me, but defended his dad to the end. We are delighted by Brendan's new hobby- it brings him so many new skills, quite a few of them social, but also dexterity ones & definitely patience & coping with frustration ones. It will be very interesting to see where this goes...

So, just a week & a half left of school, with Music Night this Friday (I believe his class will be singing the parody song Brendan & I wrote a couple months ago at his music teacher's request :). Exactly 2 weeks from today we will fly to Japan. Charlie bought the Japan Rail tickets today, after consulting Tomoko about the best way to go about it all. We plan to take the Nozomi, the very fastest train ever, after our week in Tokyo, down to Kyushu to stay with Tomoko & her family. The pile of omiyage gifts to take to Japan is becoming truly impressive- & frightening, when we consider packing it all. We also ordered some japanese "en" (money) which will arrive by mail in a few days. I have researched & discovered that I won't need a special power converter for the computer while we're there, but I did discover that my present purse/shoulder bag is too small to carry the laptop in, so I'm off tomorrow to find a new one, plus an insulating envelope to protect the laptop. Charlie told me today that he thinks that the most difficult transition will be moving from getting-ready mode to "doing" mode. I am counting on the mindfulness practise to get me through... not long till all happens!

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At 11:41 AM, Blogger Club 166 said...

The mind is a wonderful and powerful thing. And no one realizes the power that controlling your breathing has on the rest of you until they try it.

I have been teaching proper breathing to my 7 year old, Buddy Boy, for the last two years now. It's still hard to get him to practice it when he really needs it, but I think if I lay a foundation now it will be easier for him to incorporate the practice later.


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