Sunday, December 31, 2006

"Osoji" & "osechi"...

Well, it's done (mostly). In order to celebrate New Years Japanese-style, today I engaged in two very important activities: "osoji", which means the new year cleaning, & "osechi ryori", which is cooking the new year food. To be honest, the "osoji" was not as comprehensive as it would have been in Japan, where the house is turned upside-down, bookshelves are emptied, moved, cleaned behind, dusted, & reloaded (as an example), etc... What I have been doing for the past week-ish is making mental notes of the messy, trouble spots around the house & dedicating myself to putting them to rights. Today I tackled one of the worst- a particular long shelf in the kitchen that collects every piece of junk imaginable until things are no longer distinguisable from each other... (& the cookbooks that sit behind the junk are not accessible). It is no longer so, thanks to "osoji". In fact, I keep stopping to admire the clean lines of a shelf full of cookbooks & almost completely lacking clutter. The recycling bin is now full of old magazines & papers that were useful last spring & summer & I found some things I've been looking for (in a desultory fashion) for months. Hooray!! Charlie & Brendan steered way clear of the osoji- smart guys.

Tomoko arrived for a lesson, with osechi ryori to follow, at 2:00. Our lesson was of InuYasha & friends telling each other "Happy New Year" ("akemashite omedeto") in different ways & making new year resolutions. We talked about some of the activities that families do on New Year's Day in Japan, like playing games & flying kites. Brendan has decided that he wants to go kite-flying ("takoage") & according to the weather forecast, it should be fine weather for it (although weird weather for January 1st in the northeast US).

After lesson Tomoko & I got to cooking ("ryori") some osechi (new year food) for tomorrow. We decided to focus on making "nimono", which is "boiled food". We prepared some of the japanese veggies we'd found at the asian markets on Wednesday, such as renkon (lotus root) & satoimo (a sort of potato), & also some ninjin (good old carrots :). We also added shirataki, which are noodles made from yam starch, shiitake mushrooms, & koyadofu, which is freeze-dried tofu to the pot, & simmered it all in dashi (fish broth), shoyu (soy sauce), mirin (cooking rice wine), & sugar. We tasted the broth from time to time & I learned alot about how it's supposed to taste by tasting the evolution of the broth. We also made tamagoyaki, which is a rolled omelette. Tomoko's mom had sent from Japan some foods she'd made, too, like pickles, which we'll add to the jubako (box for the new years foods) tomorrow. There were also a couple traditional foods which won't make the box, being too strange for even my adventurous tastes, although I did try a little bit of them. One was masses of fish eggs that looked like pale, pinkish lungs. It was very crunchy, but exuded an odd liquid when chewed, with a fishy flavour. The other was little, dried, candied fish. They tasted really good but looked kind of tortured... Tomoko giggled when I told her that. I will take a picture of the box tomorrow when we've got the food in. I actually have to give the nimono another round of simmering tomorrow morning- it's supposed to be better after simmering twice...

Tomoko had to leave before dinner, but I was able to put-together the traditional New Year's Eve soba noodle dish- long noodles representing wishes for long life. I used a mild konbu-dashi (kelp-only broth) because Charlie & Brendan aren't fond of the stronger fish-based ones (unless it's used to make miso soup, which Brendan loves). I cut some carrots into flower shapes & simmered them in the broth. Then added soy sauce, kamaboko (pressed fish cake slice), & tamagoyaki to my bowl (I'm the only one who'll eat these) & then loaded all the bowls with soba noodles & broth. It was very filling & yummy. Charlie & I split a Belgian lambic beer- just to make it a truly international experience :)

Throughout the day Brendan bounced from coping quite well with life (& the funny smells coming from the kitchen :) & then becoming paralysed by OCD thoughts & needing a lot of help getting past them. Charlie & I were able to work with him each time, but it was clear that these OCD thoughts were making him miserable & were taking a lot of his energy. At bath time this evening I heard moans coming from his room so I went up & Charlie was trying to problem-solve with him. He couldn't figure out where Rufus should go during his bath, so I volunteered to watch him... but then I had to stay upstairs (I'd begun this blog entry, but saved it to finish later)... then he needed both of us in the bathroom (I turned my back while he changed into his swimsuit)... & finally he was in the tub & washing. Whew. Afterward, we had decided to watch our favourite InuYasha episode (called "Shippo Gets an Angry Challenge", from Season 3) together, but Brendan got stuck in his room because his ExoForce lego guys weren't in the "right" positions & he said it was like a physical pain to see them that way... After repositioning the offending guys, we helped him downstairs, moaning all the way, & revved-up the dvd. Within moments of the show's beginning he was fine & we giggled our way through the episode... Whew!! He was a bit squirrelly getting into bed, but settled down as soon as I started reading to him. I gave him a "quick minute" after reading a chapter, & he coped with some restlessness & hiccups before finally falling asleep. Charlie & I agreed that it's time to start the afternoon dose of klonapin that his psychiatrist recommended earlier this week. Poor kid needs a break!!

Tomorrow we'll reap the rewards of osoji & osechi (yum!) & Brendan will have some otoshidama (New Year's gift for children). So, if you haven't heard it yet, let me be the first to wish you "akemashite omedeto gozaimasu!" (あけまして おめでと ございます!). Happy New Year!!

Friday, December 29, 2006

Holiday week...

Holiday week is a floating week- we're neither here nor there, just doing stuff & waiting for normal life to resume. This is not an easy time for any of us, although Charlie has had the "advantage" of having returned to work yesterday to normalise things for him. I am noticing how much Brendan's Adventure Quest game has been an anchor for him, a large spot of predictability that helps him feel secure. It feels almost like an additional medication, since he rarely tics or has troublesome OCD thoughts when distracted by the game. Unlike the summer time, when I arrange my life so that Brendan & I are continually involved in various projects, I have been too tired to do much other than the necessary things that moms do to keep the house & family together. All of the month's activities for church have really taken their toll on me, as have the resonances of this particular season, which can sneak up & hand me unwanted memories of unhappy Christmases past... So, in short, it's been an up & down sort of week.

Christmas Day was somewhat bumpy, starting out with the fun of opening stockings & eating our yearly grapefruit (that Santa leaves in the toes of our stockings) together. There was a too-quiet patch when Brendan disappeared to begin putting together his biggest lego set ever, desperately waited-for & gratefully received. We knew that he would spend the whole rest of the day putting it together (over 1000 pieces, for goodness sake!) & we decided ahead of time that we would let nature take it's course & not try to interrupt him in his joy. Then, after lunch, my mom arrived (& Brendan graciously interrupted himself to do the prezzie thing with Grammie, having had lunch up in his room) & I moved into full gear getting ready for our yearly Christmas tea. I made cinnamon buns (in a tree-shaped paper pan from King Arthur baking company) & scones, & we had cookie trays, & Charlie made little cream-cheese & cucumber sandwiches, & we had his favourites, petit fours, as well. We were expecting to have 10 for tea, family & friends, & we did eventually have 10- although one of our number never came to the table (guess who :) & I don't think there were more than 7 sitting at one time. It was a lot of fun to eat & chat with friends, & share the jokes & toys (& wear the paper crowns) from the crackers. Everyone made their pilgrimages up to see the lego in progress, too, so Brendan was part of the fun. By 6:30 everyone had gone & we began to wind-down. With the lego finished, Brendan found himself at lose ends & had some rough bits transitioning back into normal life (without the excitement of a big, new lego to build), but we were able to get him calmed by watching some Addams Family shows & doing our usual reading before bed.

On Tuesday Brendan alternated between playing AQ (after commenting that he hadn't played at all the day before), playing with his new lego set with dad, & watching the Addams Family. He continued to have a lot of trouble with the OCD & couldn't bear to hear certain words said all day (like the word "show", which was rather disconcerting), & when they were accidentally said he would go into head-banging, full-scream mode. Sigh. Between us & the above-mentioned activities we helped Brendan keep it together. It was definitely a day when regular, normal school days look like paradise.

Wednesday began with a trip to see Brendan's psychiatrist. He & Charlie went, since I needed to run some errands so I could get started on our holiday cards. Brendan's visit went pretty well, the first since we'd tried to switch him to Luvox & the disaster that ensued... everyone decided that we'd keep him just where he's at with the zoloft & seroquel (according to the psychiatrist, Brendan is on a "weenie" dose of seroquel- whatever that means...), & he wrote a new prescription for the klonapin so that we could try an extra dose during the day if Brendan's OCD continues to make him miserable. Holiday-cards-wise, I've been making photo-pamphlet cards to send for the past couple of years, which is labour-intensive, but fun. I evolved this type of card as an answer/antidote to the newsletters that we get from so many people. As much as I want to let the people we exchange cards with know how our year has gone, most of them are not close enough to really understand or share our journey with Brendan, & in the past I've found it very difficult to express in words what life is like for us (this blog has changed this considerably, though :). So after wrestling for years with how to give folks a sense what's going on with us, I was inspired by an origami-style pamphlet that I saw in ReadyMade magazine (& have seen in origami & bookbinding books over the years) & decided to put together booklets of pictures embellished with stickers & captions to send out. There's room for 7 pictures in each book &, after messing around with the design, I figured out how to get it to print out consistently, so that it can be mass-produced, cut, & folded accurately. This year's card had to be postponed until after the holidays because of all the work on the mummers play & the Christmas Eve service, so I was really keen to get it going. By the end of the day I had it pretty much put-together & ready to be copied. In the afternoon I took a break to go shopping with Tomoko for food for our Japanese-style New Year's celebration. It was quite an adventure :) We hit 3 asian food stores & saw everything from fireworks to live frogs being sold... (Tomoko assured me that live frogs do not figure into the celebration of Japanese New Year). In the evening we went to our friend Paula's house for their annual holiday party. It was fun, & so exciting that the fire department showed-up (nothing bad happened, really!!! :).

Yesterday Charlie went back to work & Brendan & I went grocery shopping. All went pretty well until we hit the milk/dairy section,where Brendan had an OCD thing pop up that had him head-banging the glass doors, & in my haste to get him out of there I forgot to pick up Charlie's "regular" milk (Brendan & I drink lactaid)... so he's drinking lactaid with us for the week, very good-naturedly. Luckily it was a short shopping list & we were both relieved to be out of the store & back out into the fresh air. Brendan played AQ & I worked on the cards for the rest of the day, taking breaks to watch InuYasha & work on Brendan memorising his part in the class play. The day was notable for Brendan having a lot less OCD stress (other than at the store)- hooray! After he was in bed Charlie & I sat down to print out the mailing labels for the cards & it only took 2 tries- another hooray!

Today Brendan & I took Tomoko to lunch at our favourite Japanese restaurant. It was chilly, but beautifully sunny, so we walked there & back. We chatted a lot about our favourite episodes of InuYasha & Brendan treated us to a game of "guess the InuYasha sound" where he made sounds from the show & we had to guess what made them. He's an amazing mimic & we had a lot of fun guessing :) I ran words by Tomoko that I'd heard on InuYasha & had guessed their meanings to, see if I was right. We talked a bit more about cooking on Sunday & I mentioned a few more things I'd picked up at the grocery store, in anticipation of our cooking day. Brendan & I had a mellow afternoon, with AQ & then watching some new Pokemon episodes from a dvd he'd gotten for Hannukah. Grammie had a busy day so she called to say she wasn't coming over for dinner as she usually does on Friday, so we had a quiet dinner, quiet evening, & 2 more chapters of Eragon before Brendan fell asleep.

Charlie's on call tomorrow, & in the office in the morning. I told Brendan that we would start the day by making his wizard robe, since my energy seems to be coming back & he's been waiting so patiently. Some lessons I hope I've learned from this particular holiday season: all that activity at church (pretty much non-stop for a month) really exhausted me, as worthwhile & even fun as it some of it was. Being exhausted is not fair to my family, took some of the fun out of the holidays, & made me more susceptible to depression. Next year I need to say "no" more. I suspect that I won't have trouble remembering this lesson- Charlie has been gently bringing it up for the past few days, couched in terms of finding people to help out rather that doing so much myself. He's got a good memory, too :) The best parts of this holiday were the ones spent with friends & family, & when I found quiet time to be with Charlie & Brendan. My best gift was an original story written by Brendan, & scribed (typed) by dad, which was full of Brendan's characteristic humour & imagination. It's a "to be continued..." story & I can't wait for the sequel :)

Sunday, December 24, 2006

Holiday greetings...

More holiday blessings that I am thankful for:

* Friday evening, the last night of Hannukah, which was spent with good friends- frying latkes, laughing together, sharing gifts & great food.

* A peaceful Saturday (aka "Christmas Eve Eve, according to Brendan), for the most part. Brendan still needed a great deal of distraction from OCD thoughts, but with 2 parents home the distractions came more easily. Charlie took him to a local children's museum for the morning while I wrestled with the printer (putting together a yearly picture album for Grammie is becoming a tradition) & wrapped gifts. In the afternoon we had a japanese lesson & worked out our New Year's schedule with Tomoko. If the weather co-operates (we're supposed to finally get lots of snow here in the northeast US in Tuesday) we'll take Tomoko to lunch next Wednesday then she & I will go shopping for the ingredients for osechi ryori, traditional Japanese New Year's food. We'll cook it next Sunday & have special soba noodles with her in the evening on New Year's Eve, then we'll get together again on New Year's Day to eat the food we made. I'm really psyched! Brendan played Adventure Quest when there was no other sufficient distraction & in the late afternoon we rehearsed for Christmas Eve with the other 2 members of our vocal quartet, Jessie & Ed, & then made pizza for dinner to share with Ed & his wife Newc. It was another lovely evening of friendship & really put me in the holiday spirit!

* A busy, but not quite frantic, Sunday (aka Christmas Eve :) wrapping the rest of the gifts (whew!). Charlie watched some episodes of "The Addams Family" with Brendan (a gift from some patients) & after the wrapping was done I watched the 3rd (& best) InuYasha movie with Brendan, which we'd been saving for a special occasion. We had a big lunch & early dinner, so we could be to church to rehearse with our quartet & the choir by 6:00, for the 7:30 Christmas Eve service. This was our first service with our former accompanist, soon-to-be music director (our present music director resigned last Sunday after the mummer's play because he finally realised that he didn't have time to do the job...) & so everything was feeling very new. I had programmed the music for this service, since our just-resigned music director is out of town, so I was kind of nervous about it all coming together... but it did, really beautifully. Brendan brought his new dragonology book to read during the service, but was too distracted by noises to concentrate & had a lot of trouble with tics in the early part of the service, partly because we were singing the prelude up in the choir loft & he was waiting for us down in the pews. We offered to let him go to the lounge & play AQ on the church computer during the service (although I'd have worried about him the whole time, out there alone) but he said that he would stay in the service because he wanted to be with us on Christmas Eve & didn't want to miss holding candles & singing "Silent Night" at the end of the service. Sweet boy :) He did really well, too, as long as we were nearby. When we got home I "rocked Rufus to sleep" while Brendan & dad put together a stocking for Rufe (an apple, some carrots, & a candy cane :). Then Charlie read "The Night Before Christmas" & "Olive the Other Reindeer" to Brendan at bedtime, instead of our usual couple chapters of Eragon. He fell asleep soon after, & Charlie & I sat, had some eggnog, & just enjoyed some quiet time together. Charlie's support throughout this particularly busy & stressful holiday season is the main factor in my still being sane, & I feel so blessed to have him by my side...

Earlier this evening I took the photos of Brendan in front of the tree wearing his Kirara (cat-demon from InuYasha) hat, which he received last week for Hannukah. Happy holidays from our family to all of our online friends!!

Friday, December 22, 2006

Today's blessings...

* The past couple of days have been relatively peaceful (if not productive :)

* After 40-ish minutes of screaming, tears & tics due to OCD imperatives this morning, Brendan was able to eat breakfast & resume his Adventure Quest game in relative calm.

* The pen that went through this morning's wash only destroyed 1 article of clothing (a pair of Brendan's boxers) leaving the rest of the load (whites/brights!) unscathed

* The big, nasty, blue blop of ink adhered to the side of the washer was able to be scrubbed & rinsed off so that it shouldn't contaminate any other loads of laundry...

* Our minister, with whom I had a 10:00 am meeting at church, kindly understood my need to keep Brendan home this morning & we had our meeting on the phone instead of face-to-face.

* The delight on Brendan's face when I told him we'd be making pain au chocolate today :)

* The gift for my very understanding best friend, Roo, is packaged with postpaid mailing label (thank you, click'n ship!) & ready for the mailman to take it away...

* The new, 6' tinsel tree is a delight to behold

* The Mediaeval Baebes were able to get me hopping & dancing this morning as I scrubbed, labelled, put dough in the bread machine this morning (post dealing with tears & screams, ink & wobbly knees).

* We are going to Brendan's best friend's house tonight to celebrate the last day of Hannukah.

* Jo came through on the Solstice (... and none will come after...) with "Harry Potter & the Deathly Hallows" (the theories are already bubbling forth...).

* I found the time & energy to update the blog... :)

Tuesday, December 19, 2006


It really does feel like I'm finally coming up for air... the last few days are a blur of activity. Above you can see the Quack Doctor, aka Brendan, with Father Christmas & The Fool from our mummers play at church last Sunday. He really stole the show :) Brendan had his lines memorised & was fully in character from the moment he arrived on stage. He loved how everyone laughed at his funny lines (which was most of them :) & he was so focused that he barely ticced at the whole morning.

Here is about half of the dragon (2 of 4 inhabitants :), during the encounter with St. George (& right before ignominious defeat at his- actually Brendan's- wooden sword). My goddaughter, who was at the front of the dragon, said it was a lot of fun to wear it & play the role, so I think that qualifies as a success. It certainly got it's share of laughs :) After the play, someone asked me if it had been hard to put it all together. When I thought about it, I realised that the hardest part was letting it go. There was a particular moment in the service, when I was done with my bit (I was the service leader) & the play started to unfold, when I realised that there was no more that I could do... just sit back, watch it unfurl, & take pictures. It was very weird. But it was very good, too. At the end of the service Brendan did, indeed, join us for singing the "Gower Wassail" for the postlude & it sounded great to have him with us. We received very nice comments from the congregation about the play, too. So, it was definitely worth the time, wear & tear of organising & costuming it all :)

We actually had a japanese lesson Sunday afternoon as well & Brendan & I managed to stay focused for it, in spite of the excitement of the morning. Afterward we finally got a start on putting the decorations up. I was really keen to get the new, 6' tinsel tree up, since I hadn't opened the box & had no idea of how many pieces it was in or how it went together. The tinsel tree thing is fairly new to us, made necessary by my asthma reacting to the real tree 4 years ago, & resulting in a rather goofy-looking 4' tinsel tree (inspired by my not being able to bear a fake tree that was trying to look like a real one & Brendan's request for a "shiny aluminum tree" ala Charlie Brown) as the replacement. After wrestling the new tree out of it's box & discovering that it wasn't in a million pieces but reasonably simple to deal with, I just sacked-out on the sofa for a while. Brendan very kindly turned the sound way down on his Adventure Quest game :) After dinner we lit the candles for the 3rd night of Chanukah & his gelt was a Power Rangers Mystic Force (the newest series) dvd. He has been wanting to see this new series ever since he discovered it was coming out, but we don't get cable tv, so I was happy to discover the dvd of the first few episodes when I was out shopping a couple months ago. We watched it that evening & it was pretty cute, actually. The new, nature-magic storyline dovetails very nicely with his interest in sword & sorcery (thanks to AQ) so he enjoyed it very much. I was impressed that their new mentor is a middle-aged woman. Go Power Rangers!

Monday started off pretty well- Brendan has been waking up before the alarm lately, which gives him time to adjust to the day & makes things go a lot more quickly in the morning. No moaning at all about school, since there were only 2 days before the break. Everything was going swimmingly, so I wasn't prepared for his OCD to erupt just as we were getting ready to go out the door. He took his coat off the door-handle where it was hanging, then put it back, then took it off, then put it back- over & over, & finally erupted with frustration because he couldn't do it "right". I tried to get him back on track by taking the coat gently from him & putting it on him, which usually works to break up the tic, but this time it didn't. On the way out to the car he screamed intermittently (in a ticcy way) & continued in the car. I stopped the car while we were still in the driveway & tried to talk him down, but he couldn't bear to have his coat on, he said. I told him he had to have a coat because it was cold... nothing helped, all he wanted to do was go back & put it back on the door-handle & take it off "properly". I tried to drive to school anyway, but he kept screaming & yelling "why do I have OCD?" & finally I ended-up in tears, & told him that I wanted to go home & get him something else to wear. I really did not want him going back & doing the OCD ritual with his coat again- that just seemed like a dead end. Since I knew the parking lot at school would be really crowded for a while (we usually get there early so Brendan can get settled in before all the commotion starts & I can get to my door-greeter job) we didn't leave immediately after getting home. I needed to get a grip, after crying in the car. I knew Brendan felt bad about my crying & I wanted to let him know I was ok. He had scooted into the living room while I got some kleenex, & when I got to the living room he was on the sofa wearing the Kirara hat he'd gotten for the first night of Chanukah, making cute noises. (Kirara is a demon-cat character in InuYasha & when I found the hat in our local anime store I knew I had to get it for him to go with the InuYasha hat I'd made him :). We sat on the sofa & hugged for about 10 minutes & I explained that I was really tired from all the mummers play excitement & that was one reason I was crying. He was really sweet, & perfectly calm after taking the offending coat off. I had him put his fleece pullover on when ti was time to go & we had a very peaceful ride to school. I must have looked pretty bad because I kept getting hugs from people at school (another reason it's such a great place...). Brendan settled-in perfectly well once we got there, but I still was rattled by my crying jag. I went to the chiropracter next & it was wonderful to relax with the heating pad on my back & get some relief from the pain of all the work & busyness of the past couple of weeks. Then I went to the grocery store to buy grapefruit... I had remembered that Brendan would be with me this week when we go shopping & I didn't want him to have to see me buy the annual stocking grapefruit. Charlie's family has a long tradition of putting a grapefruit in the toe of everybody's stocking & Brendan particularly looks forward to this every year. It's kind of funny- he's known that we're really Santa for over a year, but if anything, he talks more about Santa & stockings now than he ever did before he knew (Santa just brings the stockings in our house). So, in order to help him maintain the illusion a bit longer I decided to make a special trip for the grapefruit, & even got him a pomegranite, too :) And me a decaf latte...

I spent the rest of the day unpacking duffel bags full of mummers costumes, washing whatever needed it, & packing everything into boxes for storage until next year. Then I began to reclaim various corners of the house from the chaos that had descended while I was making costumes & fine-tuning the script, etc. I knew I wouldn't feel right until things were back in the lower-level of chaos we usually live with. When I picked Brendan up from school he was in great spirits & stayed that way for the rest of the day. I worked on putting his teachers' presents together & intermittently interrupted his AQ play to have him sign gift tags or make a beaded bracelet for his secret santa (which I had just discovered he'd had & needed a gift for when I picked him up from school). He also spent some time sanding his new wizard/monk (ala InuYasha) staff, a yard-long dowel he appropriated from the mummers costumes laying about the house. This stick has really caught his fancy & he's been hauling it everywhere around the house, although it was rather a nuisince in the morning when he dropped his breakfast on the floor because one hand was occupied with the staff... So we also discussed some staff safety rules, like keeping it perpendicular to the floor at all times & not raising it over his head, & putting it down when he's making breakfast... He wanted to make it smooth so I got some sandpaper for him & put down newspapaer & he did a great job of sanding it silky smooth- the first time he's really sanded anything on his own. Charlie was at a work meeting late so Brendan & I had a nice dinner of tofu & rice, & after Charlie got home he & Brendan played dreidel for chocolate gelt while the candles burned.

Today was known as the "second-most-wired day of the year" at school (the first being the last day of school). We had loads of gifts to haul in & distribute to teachers, therapists, & office friends. His OT was really impressed by the bracelets he'd beaded for everyone, & they all loved their bracelets, too. Brendan wore the green santa hat I'd knitted for him when he was 2 (still pretty much fits...) & looked very festive :) I was alert all day, as I ran from meeting to meeting, for a call from school to come get him but the excitement never got to him. I was really glad- he had a nice day & told me that his secret santa classmate had smiled when he gave her the bracelet he'd made for her. We had a very mellow afternoon, enjoying the freedom of school being out for the rest of the year. We plan to make cookies starting tomorrow, & brainstorming something special for dad :) After dinner & bath time, Charlie put the Alvin & the Chipmunks Christmas cd in the player & we sat on the sofa watching him put together 14 giftboxes for his office staff, singing along with Alvin, Simon, & Theodore. Then they got out the stockings (4, one for each of us 3 plus Rufus :) & hung them from the mantel. I only read to Brendan for about 20 minutes & he was sound asleep.

The holidays are here!

Friday, December 15, 2006

Holiday music tag... Brendan's list

MOM-NOS has posted her list of top 5 holiday tunes & invited others to chime in, either in her comments or their own blogs. I am having the worst time logging-into the comments of blogger-based blogs these days (except, thanks goodness, my own which gives me no trouble with the exact same log-in & password- any helpful ideas about this problem would be welcome!), so here is the list of Brendan's top 5 favourite holiday songs this year...

#1: The Gower Wassail (you can listen to it here)
This is the song we've been learning over the past couple of weeks that our (formerly quartet, until Brendan decided to join us :) quintet will be singing as the postlude for the mummers play this Sunday. Brendan says he likes it "because it's different, like me...".

#2: When Christmas Comes to Town (from "Polar Express")
They are learning this at school. We've never seen the movie, nor heard the soundtrack, but when Brendan sang a snippet to me this morning, I could see why he likes this pretty tune. He says it's fun to sing.

#3: Hannukah oh Hannukah
This is another song they're learning at school. Brendan says it's easy to memorise & fun to sing.

#4: Joy the the World
Brendan told me he's loved this song since he first heard dad play it on the piano :)

#5: Grandma Got Run Over by a Reindeer
According to Brendan this is great comic relief during the holidays. We have used it as the basis for a holiday-themed improvisation, too

There you have it! I'll try to think about my own list, too...

Wednesday, December 13, 2006

Dragon sneak peek... :)

I finished embellishing the dragon for the mummers play this Sunday. Here are Brendan & Charlie modelling for a sneak peek photo. It really takes 4 people to fill it up, though, so they're doing "dragon lite" here. After I took the picture Brendan insisted that I get in too & we walk around the house with it on :) So I became the dragon's butt-end & looked after the tail...

We had received an email yesterday from Paula, friend & director of Brendan's school, letting us know that both his teachers would be out most of this morning for a CSE meeting for another child in his class. They had subs for both, but since Brendan has been having a lot of trouble with anxiety lately she thought it might be good to have one of us stick around & get him settled. Charlie has not scheduled himself in the office any Wednesday mornings this month because he's doing 3 Wednesday afternoons of teaching physical exams to medical students (normally he's off on Wednesday afternoon). After comparing notes on our morning plans, he decided he'd be the one to hang around at school & make sure Brendan was ok. I took off to JoAnn Fabrics because I had run out of rotary-cutter blades in the middle of cutting out 60-odd polar fleece scarves for costuming the Sunday School classes for the mummers play. Charlie had been intending to go to the post office & buy stamps so I added this to my list, since he was hoping to do errands in another part of town after he was done at school. I worked on the costumes the rest of the morning & waited for him to get home... which didn't happen until just before noon. I guess it had been a really good idea to have one of us there this morning. Brendan had a couple of anxiety-driven head-banging incidents & neither of the subs knew him well enough to help out. His poor teachers had left for their meeting at 8:45 & didn't get back to school until 11:30 (that was some meeting...) so Charlie just stayed until lunchtime. As we were eating lunch together at home I remarked that Brendan had had one of the highest-paid one-on-one aides in the city this morning, if you take into account Charlie's regular hourly rate as a physician... :)

I went to get Brendan at school this afternoon, since Charlie was still trying get stuff done before he left to teach. Brendan had had a good afternoon, even though they'd had PE & then the younger kids came upstairs to their floor for reading buddies (something he doesn't cope well with). I found him hanging-out in the recycling bucket as a joke, since he'd told me he was a "1, 2, or 3" (in terms of recycling numbers) on Monday after having taken refuge in there. He was in good spirits all the way home & grabbed a bowl of peanuts for snack before getting on the computer to play Adventure Quest for a bit. I told him I'd be interrupting his game for help putting the wings & spines on the dragon & also so he could finish the last 2 holiday presents he was making for his teachers, & he cheerfully agreed. Lately he's been getting really angry & upset during his AQ game, which has prompted me to request that he either approach it with a more pleasant attitude or take a break. He began to descend into nasty-temper mode at the beginning of his game, but it just took a couple reminders to get him back to a happier place. He kept his good mood for the rest of the day- through modelling the dragon costume so I could pin embellishments onto it, beading gifts (we rehearsed his lines for the mummers play while he worked), & dinner after dad got home. He mentioned during dinner that he couldn't believe there are only 4 days of school left this year :) I remembered that he'd been in a good mood this morning, too, when he woke up & never once grumbled that it was a school day. I thanked him for starting the day out so pleasantly & he looked surprised & pleased. Positive feedback- it's a keeper :) He & Charlie watched "How the Grinch Stole Christmas" while I finished sewing spines on the dragon -our tv room is so tiny the yards & yards of costume won't fit in there, so I listened to them laugh & the Who's haunting melody wafted down the stairs while I stitched. Then they did the photo shoot for me & Brendan played AQ until bedtime & I read more Eragon to him. Hmmm... we must be on a dragon roll these days...

Tuesday, December 12, 2006

Posautive my way...

For various reasons, including never before having tried to post a video in my blog (& being too tired to figure it out right now), Brendan having had another rough day, &... did I mention that I'm tired (?), I am going to do a different spin on the Posautive posting that Kev requested. Having inadvertantly revealed my family's names (heretofore referred to by their initials) a few weeks ago, I'm gonna go all the way & post some pictures of Brendan, my autistic son, & Charlie & myself doing some very positive things :) As much as I've been wary of posting current pictures on my kid on the internet, I am also very proud to share pictures of my beautiful boy.

The one above is of Charlie with Brendan when he was about 18 months old. His nickname at the time was "fluffer duck", due to that fluffy yellow hair...

This was from our visit to a glass museum last April during Spring break. Brendan took a glass-blowing workshop & made an ornament that hangs in our living-room window now.

This summer Brendan learned to weave on my floor loom, something he'd been wanting to do ever since I got it 4 years ago, since he's mad for machines. We wove a blanket together, & although his motor-planning issues made it difficult to learn the sequence of movements necessary to treadle with feet & throw the shuttle with hands, he had it down after a couple sessions & got to really enjoy the process of weaving. We're planning to make another one during the holiday break.

Here we are as Professors Dumbledore & McGonagal with one of our students from Hogwarts School of Witchcraft & Wizardry :) Brendan had practically outgrown his wizard robe but struggled back into it for a friend's birthday party last summer. We are currently working on a new wizard's robe for him out of blue fabric... more in the Adventure Quest vein than HP, though.

...And here are Charlie & Brendan block-&-tackling our sailboat back onto the haulout after winning Brendan's very first sailboat race last September, on Labour Day.

Our life with Brendan is never dull, & I wouldn't trade it for anything in the world!!

Monday, December 11, 2006

Reversing entropy...

Or, at least an attempt to reduce it...

Today, after getting Brendan to school & putting the second load of laundry in, I went looking for his k'nex, which had been put away in a fit of tidying a while back. I had a vivid memory of their being in his closet, but when he & dad went looking in there they didn't find them. Enter the Entropy Reducer, aka "mom". The first difficulty with Brendan's closet is that one of its 2 doors is blocked by his computer printer (which probably no longer works because it's been about a year since he's used it...). The second difficulty is that all of his outgrown clothes for the past year-ish have been piled behind the blocked door, so it's hard to get waaay over into the corner where I'm convinced the k'nex are. So, first up is a trip to the basement to get a box. The biggest box, however, still had packing material in it (the year-old bread machine box) so I emptied & recycled the various packing materials & ended up sorting through some more boxes & emptying them as well, resulting in 2 bags for the trash can, 3 collapsed boxes for recycling, & 1 large, empty box for outgrown clothes. Back upstairs in Brendan's room, I began sorting clothes into the big box & found some more "keepers" among the t-shirts- shirts from special places & the like that I have been keeping to use in a quilt (or something) someday. So, they went in a separate pile destined for an even bigger pile up in my attic craft-room. Thinking about that very big pile of keepers, I realised that it really wouldn't bear any more weight without imploding, so I pondered where to store these "someday" items that would actually create order out of chaos, rather than more chaos... While stowing the box of outgrown clothes in the basement I came across an unused, really big plastic toter that we used to haul camping gear in when we had a mini van (which had room for really big toters). It has been unused since we went for smallers cars, though, & I realised it's the perfect place for the pile of clothing... Three or 4 trips from the attic to the basement later, I had unearthed nearly 10 years worth of keeper shirts & was feeling nostolgically sad as I placed some of the tinier shirts into the toter. I started making most of Brendan's clothes when he was about a year old (I made the the outfit he's wearing in the picture above, which documents Brendan's first encounter with a recorder & "playing" recorder with dad). I found a vest I'd knitted that he'd worn in kindergarten in the pile, along with the t-shirts I'd appliqued with Batman & Robin symbols (plus the Superman & Spiderman Underoos shirts) during his superhero phase. I'd completely forgotten that he wouldn't leave the house when he was 4 unless he was wearing superhero clothes... There were also some shirts that we'd been given during a trip to the Virgin Islands when I was 8 months along in my pregnancy with Brendan. It seemed that every time we walked into a little shop someone would hand us their smallest-sized shirt "for the baby" & refuse any payment. Charlie & I were blown away by the generosity (we thought, privately, that they were blown-away by any tourist crazy enough to travel at that stage of pregnancy...) Brendan was still wearing some of these shirts when he was 6...

In the end, not only had I found the k'nex (exactly where I'd thought they were, btw) but Brendan's closet was cleaned out, the box pile in the basement was no longer teetering dangerously, threatening to spill styrofoam popcorn all over, & my craft room's big closet no longer is (nearly as) likely to spontaneously combust. I was also really tired...

When I went to get Brendan from school this afternoon I was met at the door by his music teacher, who had precipitated an unsettling experience last Thursday. He told me he'd been thinking ever since then about how he needed to learn more about autism & how it affects Brendan in particular because he cares & really wants to do well by him. He said that he had come into school today with the intention of finding some of the books I'd mentioned last Thursday, & when he went to his mailbox this morning, was amazed to find an envelope with a sermon on autism. He said it felt like God had sent it to him... then he tried to figure out who he knew that was a minister & would give him something like that. I grinned. He hadn't realised that the "Lisa" who had signed the note on the envelope was me :) He said he finally realised that it was from me (I told him that "She" had indeed sent him a gift- ha ha) & then explained that in my church you don't have to be a minister to preach :) He thanked me for giving him a copy of the sermon & I offered to send him some links for further investigation, & he told me to "bring it on"...

I left him with warm glowy feeling, which was very helpful because when I got to the 3rd floor I found my kid in the special ed room, on the floor in tears, with his consultant teacher & speech therapist sitting quietly with him. I got him up & in my arms & we tried to get him to tell me what had happened (Cherie didn't want to "tattle" on him, & thought it would be best if he told me himself what had happened) but after about 10 minutes & lots of guessing/questioning on my part he still couldn't put it in words. Finally his teachers left us together for a little bit & he was able to tell me that math lately has been making him feel "bored & ticcy", & when the tics got out of hand he couldn't find a safe space & ended up in the recycling bin. He assured me that he fit just fine in it, but I told him that I understood why they had gotten him out of it & brought him in the special ed room instead. We actually got a bit giggly about his trying to find refuge in the recycling bin- he told me he was a "1, 2 or 3, mom"- & that lightened our moods a bit. From his teachers I got that he'd kind of blown-up with tics & swearing when it was time for math, which has been frustrating lately because he's not been focusing well during the first part of the lesson, so he hasn't known how to do the work once they get to it, & his teacher has been having to do a lot of re-teaching, which upsets him. Cherie said that the blow-up came when she'd tried to give him a choice about how to do the math work, & she thinks that he was just too overwhelmed to make any decisions at that point. They'd tried to get him to a quieter space in the wake of the tics, but he burrowed into the recycling bin instead, which led to his ending up in the special ed room, rather than a place of his choosing... My take on it all is that he's still shaking the Luvox out of his system, which had made the tics worse, & is "low" on zoloft because we'd been trying to switch him to the Luvox. In other words, his brain chemistry is not anything like "normal" for him these days, so it's no wonder he's having trouble. Sigh. I appreciated their sticking with him & their gentleness with his volatility. I just felt bad for him, too. I reminded him that things are going to be weird until the Luvox is out of his system & that we would do our best to help him get by...

When we got home we had cocoa with peppermint sticks & watched another InuYasha dvd, then Brendan played with the newly-rediscovered k'nex for a while, rather than getting right on to Adventure Quest. Unfortunately, the k'nex were not doing what he wanted them to & he blew-up with frustration, & the swearing lost him his number yet again (this the 3rd day that he's been just about to earn the InuYasha action figure & we're both beginning to feel that it's never going to happen :( big sigh). He did pull himself together & was excited about the plan to go out for Japanese for dinner, since dad had a late meeting at work & wouldn't be home. I was excited, too, because for a bit it didn't look like he was going to be able to do it. I keep trying to reinforce the steps Brendan does take that are appropriate, like asking for help when he needs it or getting himself back on track when he has a blow-up, so being able to go out for dinner was a good reward (for us both).

This morning during breakfast, after he was resigned to going back to school after a too-short weekend, Brendan told me that he wasn't only looking forward to the holiday break because he'd be out of school, but because he was looking forward to doing stuff with me :) I told him I was looking forward to it too. I really am. It will be good to have a real, live break & a chance for him to rest & do what he wants to for a while.

Sunday, December 10, 2006

Back from the beyond...

This weekend has been intense, & at the moment I feel as though I'm back from a trip to another planet (although the floaty feeling could also be partly because I managed a nap this afternoon- I will try to be coherent through the floatiness...).

Yesterday's main goals were to get the dragon costume for the mummers play in wearable condition for today's rehearsal, have a japanese lesson, & get ourselves to a 5:00-7:00 pm choir rehearsal for today's holiday choir programme at church. It was not easy to switch gears all day long, with these wildly varied activites, & Brendan's Adventure Quest game definitely saved our sanity by giving him a thread of normalcy throughout the day.

I was responsible for the dragon costume part of Saturday's activities, & Charlie decided to take Brendan holiday shopping with him for his office staff while I sewed. The main enticement for Brendan was a visit to the best chocolate shop in town & they brought back goodies for lunch as well as presents :) I had made the body of the dragon this past week, but really needed to get the head put together so that the person in front could rehearse with it on, since I knew that it would be obscuring their vision somewhat- it just couldn't be helped. The dragon's head is essentially an earflap hat with an extended front peak that is the dragons' top jaw, complete with pointy teeth. In the end, I had to run clear monofilament thread from the nose to the top of the head to keep it from flopping down, but it works :) I found some iridescent fabric for the pupils of the eyes, & scraps of different colours of polar fleece for the rest of the facial features, which I appliqued on to the face. Pictures will be posted, probably next Sunday after the performance.

On to japanese... Charlie put out our weekly sentence for Tomoko to read (well, he found it in a guide book & I spelled it out for him in hiragana). It was supposed to be "Where does this train go?" but it turns out the guidebook was wrong & it really said "Is this the way to the train station?" (I had had my doubts about the first interpretation because I couldn't find the word for "where" in the sentence), so it was good to have Tomoko set him on track (no pun intended) with the proper meaning... my big question was what was Charlie going to do when somebody actually answered his question in japanese :) We decided the next phrase he needs to learn is" Talk to my kid, he understands japanese." **grin** The we got down to the task of teaching his kid (& me) japanese, which went a bit better this week. Brendan wasn't nearly as distractable as he's been for the past couple of weeks & even paid attention when we digressed into comparing notes on recent episodes of InuYasha & the evolution of InuYasha's brother Sesshomaru's character. We learned the japanese equivalent of "let sleeping dogs lie" (translates as "leave a fool as he is") & added some verbs to our repertoire.

After japanese I worked some more on the dragon while Brendan played AQ & Charlie went early to church to rehearse with the recorder quartet that will be playing for the mummer's play. I tried to plan things so that Brendan & I would have time for a snack before going to choir practise, but wanting to get the main dragon work done before we went to church, plus Brendan's late-afternoon "witching hour" conspired against me. We ended-up yelling at each other at one point, over a misunderstanding (I thought he was having some OCD issues about going to church for the rehearsal & panicked), but we sorted things out & were only a little late for rehearsal (& both managed to get some food as well). We sang hard for 2 hours while Brendan played AQ on the church computer, & left feeling pretty darn ready for the performance- always a good thing. The 3 of us when out for pizza afterward, since it was late for us, dinner-wise. Over dinner we caught Charlie up with our afternoon, & I lightly touched on our misunderstanding, following it up by saying "...but we were friends again by the time we left the house..." Brendan interjected, "Mom! We're more than just friends!" semi-indignantly & Charlie & I burst out laughing, then had to explain to him what "more than friends" can mean, which had the added amusement of grossing-out his 10-year-old sensibilities... After Brendan was in bed & asleep Charlie & I chatted about how he did that day. We can already see that he's less compulsive & ticcy, & we're really glad that we discontinued the luvox last week.

I had the dragon in good shape before bedtime, which allowed me a good night's sleep. I hauled out some of our travel duffel bags to carry it & few other costumes & props that needed to be rehearsed in, so the players could get the feel of them. It was hard to get in a singing mindset this morning, with the mummers rehearsal after church so much on my mind. Charlie told me that I should be "the director" for the rehearsal, since I have clear ideas about how the action should go, & that he'd do anything else that needed to be done (pay attention to sound/microphone issues, for example) & we put together a rough plan for the rehearsal so that no-one would have to sit around waiting for too long to rehearse their parts. When we got to church at 8:30 am I just stowed away the duffel bags under a pew & tried to get into singing mode. We were performing a varied programme- a couple pieces in french, one in latin, 2 familiar carols & a shape-note type song, so it was a challenge to switch vocal styles. Brendan happily shared the computer with our minister's son (who originally introduced him to AQ) while we rehearsed & I think Brendan really enjoyed learning some things about the game from him & teaching a few in turn. We made room for him in the pews reserved for the choir this morning & he got through the first part of the service pretty well, then was off to Sunday School while we stayed behind & performed with the choir during what is usually the sermon portion of the service. We all sang really well :) Before I knew it, it was time to rehearse the mummers play...

I tracked the various players down & gave them their scripts (I'd emailed them out earlier in the week so they could take a look beforehand) & they drifted back into the sanctuary. Although the whole Sunday School is part of it, we only needed the 2 older classes, playing sword dancers & the dragon, plus Brendan & one of his classmates who's playing the piano for the play to stay for the rehearsal. We got the sword dancers familiar with what they had to do (definitely a cat-herding exercise, but their energy made up for any lack of finesse :), & ran Santa through his lines so he could go. Then I suited-up the dragon, to much hilarity, & told them to walk around the church a bit & get used to the costume. We realised that we need an extra person (one of the kids wasn't there, but his mom has promised he'll be there next week) so we conscripted a friend to fill-out the dragon & then choreographed the battle between St. George & the dragon, with piano sound effects to underline the drama (& prevent anyone from actually having to make contact). It went really well, considering that the person in the front of the dragon (our goddaughter) really can't see much under the head, & the rest of the dragon can't see anything at all... Then we did the scene where Brendan, as the Quack Doctor, attempts to bring St. George back to life after his fatal encounter with the friendly sword-dancers (it's all a metaphor for the death of the old year & birth of the new). He had the dragon folks & other observers in stitches with the delivery of his lines & came up with a couple of great ad-libs. He dissolved into giggles at one point when the bottle of "medicine" he was trying to open wouldn't budge (note to self: find a different bottle). By the end of the run-through we were feeling good about it & all of our players had a sense of what they need to do next week. It was a lot of fun & I think that the timeless message of the play will be enhanced rather than diminished by the goofiness of the whole thing.

We got home to a late lunch (Brendan had a bagel during coffee hour & was the only one of the 3 of us who wasn't ravenous) & then Brendan & I watched some InuYasha while Charlie did some wrapping for Hannukah (this Friday!!) & went out to buy some more wrapping paper & dreidels for his Sunday School class (they are singing the dreidel song for the play & he wanted them all to have dreidels to hold up). Then Brendan went back to AQ & I took a nap. He & Charlie worked on a story they're writing (it's a secret... shhh!) & then Charlie made dinner while I was unconscious. When I finally woke up it was time for dinner & to get used to the idea that the weekend was nearly over & Brendan's last full week of school before the holidays is about to commence... amazing...

I don't think I've been so busy at holiday time since the year Brendan was born & I hadn't re-structured my present-buying strategies to accomodate a baby... Unlike that fiasco, though, this is feeling possible (heck, it's being possible). There has been some stress & I have found myself laying in bed at odd hours imagining ways to attach dragon spines & wings without them flopping all over the place (this week's task- embellish the dragon). But it's also been family time- rehearsing Brendan's lines for the play with him, doing our regular japanese lesson & helping dad with his japanese, going out to dinner together after rehearsal, today's rehearsal with him as an integral part of the play. Most years, this close to the holidays, I have had my usual bout of holiday depression & had a hard time shaking it off sufficiently to enjoy the seasonal revving-up going on around me. Christmas was the most difficult time of year when I was growing up- my father was most likely to abuse alcohol & us during the holidays & the one-day blowout of Christmas was just too much for me to enjoy, particularly when under the stress of walking on eggshells around dad. Charlie & I have done many intentional things to change how we celebrate the holidays so that our holidays don't bring up bad/sad memories, but every year I have a lot of residual pain & succumb to depression & anxiousness at some point, although having Brendan around has made it easier to shake off the depression each year. This year, the busyness has kept it at bay even more, which has been a pleasant surprise. And although we're busy, as I said, we're doing so much of it together that it feels like fun, purposeful activity rather than frantic escape from pain. There's a lesson in here somewhere- I hope I learn enough of it to be useful in the future :)

Thursday, December 07, 2006

Holiday busyness & an unsettling event...

Brendan had another upsy-downsy day yesterday, holding it together very well at school (participating willingly in gym class- yay!) but then melting-down the minute Charlie arrived to pick him up. The loud, gagging tics are still very much in evidence- he began the day yesterday having them & then asked/demanded of me "what is up with these new tics?", to which I could only reply "we're not sure". He's also been having really compulsive behaviour (needing to touch or do certain things repeatedly), so last evening we took a long look at the printout Charlie had on the Luvox & decided that it's very likely the cause of the increased tics & anxiety. Sigh. He was on it 8 days... Charlie called Brendan's psychiatrist this morning & left a message that we'd discontinued the Luvox & to call us if he had any thoughts or suggestions. I am ready to just go back to 75 mg. zoloft daily, which takes the edge off of the anxiety but does not require additional seroquel to counteract the revving-up effect that Brendan has on higher doses of SSRI's & then just keep him there. This kid needs a break from side effects...

We are shifting into higher gear these days, with big church events the next 2 Sundays. This week is our annual choir holiday programme, so we have a dress rehearsal on Saturday evening & then the performance the next day. The next week is the Sunday School's big event, our second annual mummers play, which Charlie & I are organising. We spent a lot of yesterday working like mad on the play- finalising the script, emailing & telephoning various participants, & I bought yards & yards of fabric for costumes & then washed it all. Although all 5 of the Sunday School classes are taking part in the play (singing songs or reciting poems) Only 1 kid has a speaking part, & that kid is Brendan :) (there are 4 adult speaking parts as well) Last year's play was more of a tableau/ritual, with various people symbolising aspects of the many traditional beliefs around the winter holidays, & all of the kids were animals associated with these traditions except for Brendan, who played a traditional mumming figure: the Quack Doctor. This meant that most of the kids sat around a lot & listened, which was not the most interesting thing for them to do. I was playing St. Cecelia & had a group of rowdy kindergarten-aged wrens at my feet, who put me in a very un-saint-like mood at one point, but it really wasn't their fault that they were bored. This year I've tried to organise things so that the kids will be kept occupied, either by their performances, putting ornaments on a tree, or watching St. George fight a dragon on the platform level of the sanctuary (safely away from them :). Brendan will be the Quack Doctor again, but this year he actually gets to try to bring someone back from the dead (also a mumming tradition, representing the rebirth of the new year). I went over his lines with him last evening & he remembered a lot from last year, so he's ahead of the game :) He's really looking forward to the play- particularly tossing mini-marshmallows out into the crowd as he asks them to try his "medicine". My main concern at this point is the dragon, since I am making the dragon costume. Today I took 6 yards of acid-green polar fleece & turned it into the body of the dragon (with room for at least 3 people & a long tail draggin' behind :), then designed a mock-up of the head, which will be attached to a fleece earflap hat. The final touch will be matching fleece mittens with long fleece claws. I found all the pattern pieces I need for hat & mittens, plus scraps of different colurs for eyes, etc, so tomorrow I hope to make the head & have the whole thing ready for rehearsal after the service (& choir performance) this Sunday. Whew! My high school class is the dragon, so I can't wait to see what the kids think of the costume (they picked out the colour & gave me advice about the "look" they wanted). The other costume crafting that has to be done is to turn yards & yards of polar fleece into matching scarves for three of the other classes to wear for their performances (they are playing carollers coming to Father Christmas' holiday party...).

A very unsettling thing happened when I went to pick Brendan up from school. I caught the tail-end of his music class as I walked up to the third floor, & I could hear the music teacher saying something to the effect of "...I know that you have a difficult illness to overcome, & I'm not sure I would be able to walk the road you're on, but you have to ask for help when you need it. Remember that someday you are going to have to take responsibility for the things you do..." It was an odd thing to hear, & something about it made me think that it was my kid to whom these remarks were being addressed. The class broke-up right after that & Brendan came around the corner to where I was wih a smile on his face. I asked him what they'd been doing in class & he said that the teacher had been giving him advice... Ulp! I was right. I asked him if he felt ok about it & he said yes... but I was very unsettled about what I'd heard. Brendan's consultant teacher, Cherie, came over to us then & I was trying to let her know that I was uncertain about what had just happened in music (she had not been there) without over-reacting in front of Brendan. We asked him how these remarks came about & he said that the teacher had been giving a few of the students feedback about their personalities & that he had raised his hand & asked for some feedback too (!). I was glad that, at least, Brendan wasn't being yelled at... Cherie decided to go get the teacher so we could talk to him, & Brendan was pretty oblivious, hanging out across the room waiting for me to be ready to take him home. The music teacher sat with us & repeated what he'd said to Brendan, & said that he felt the tics were really getting in the way of Brendan's participation in class & was trying to help him take responsibility for his behaviour. I explained that Brendan's autism & Tourette's/OCD are not really an "illness" but a neurological difference that he was born with & will always have. The teacher said that he hadn't known that & was willing to learn about it, if we would like to give him something to read. I thanked him & told him we'd be glad to give him more info, & that our goal, really, is to change the world one person at a time by educating anyone that's interested, so that there will be greater understanding of autism. I also explained that we want to tread gently when putting the reaponsibility for the tics on Brendan's shoulders because they are not completely under his control. Cherie chimed-in that the afternoon is a difficult time for him, so he can't suppress them as much as he can earlier in the day. I told the teacher to think of them almost like seizures, in terms of Brendan's ability to prevent them from happening. I really wanted to give him a powerful understanding that Brendan is not willfully disrupting things, & certainly the tics are random neurological firings that he does not have conscious control over. I also told him that we're happy to answer any questions that may pop up & he thanked me, & then did have a question, about Brendan always bringing a "toy" (usually a k'nex creation of his own) to class, & Cherie & I explained that Brendan focuses batter if he's manipulating something with his hands (that's why he makes the k'nex things...). So the teacher said that was fine & he'd relax his usual rule about no toys in class for Brendan.

On the way home in the car I told Brendan that I had wanted to make sure this teacher, whom we all like & respect, understood what was going on with the tics, & that Brendan's neurological differences are not an illness. Brendan agreed, because "what I have isn't contaigous" & we talked about how some people (like kids) can be afraid of catching things that aren't contaigous if they don't understand. I was still really unsettled by the whole thing, mainly because it had been so public (well-liked teacher making well-meant but ignorant remarks about my kid in front fo the whole class...). Brendan didn't seem fazed at all by what had happened, which is good. He did, however, tell me something amazing in the aftermath. As we were driving home he said "Mom, there's something important that I want you to know- it's hard to find the words, though." I waited patiently, & he said very softly "When the tics are really bad sometimes I say that I wish I would be murdered, but that doesn't mean that I really want to die. I like my life, Mom." I told him that my sense is that he says things like that because he's miserable & really telling us that he wishes he didn't exist for that moment, because he's in so much pain. Brendan said that that was true. By this time I was pretty teary, but said that I was glad he likes his life, & that I didn't know what I'd do without him, & he said thank-you... (& then, "are you ok, Mom?" & I said, "I will be...") Later I talked about the whole thing with Charlie & he suggested that I give this teacher a copy of the sermon I gave at church a few weeks ago, so he'll not only have a better understanding of what's going on with Brendan but our perspective on it as well. I'm also going to ask Cherie where some of the books we've donated to school on autism & OCD are, so they can be lent to this teacher.

This afternoon at home, in between playing Adventure Quest, Brendan helped me by wearing the dragon costume body while I figured out where the velcro goes to fasten it on & cut the tapering tail. He also got a good start on making holiday gifts for his teachers, beading beautiful bracelets with faceted glass beads he'd picked out. After dinner & some more AQ we all sat down to watch part of a PBS special Charlie had taped about the "Electric Company" show from the 70's that Charlie & I remember so fondly. We had forgotten that Bill Cosby (as well as Rita Moreno) were part of the cast, & Brendan giggled hysterically at some of the skits. While I was reading to Brendan (we finished "The Dark is Rising" & began "Eragon") Charlie got online & found that the local library system has episodes of "Electric Company" so we'll probably check some out over the weekend.

Tomorrow- finish the dragon! (I will take pictures :)

Tuesday, December 05, 2006

Up then down...

It's hard to believe that this time last week it was in the 60's, temperature-wise. It hovered around 30 today, & there was a dusting of snow on the ground, although the sun made it a gorgeously cold day...

Yesterday was notable for Brendan starting the day in his classroom (with a new-to-him substitute teacher), doing the same morning work as everybody else. I did a double-take when I came upstairs to kiss him goodbye, since he was diligently working, writing in a workbook with a pencil -another thing he really dislikes doing. He was peaceful & focused on his work when I left him. :) I had a day of laundry & errands. When I picked him up his speech therapist was there, beaming happily. Brendan had participated beautifully in the math lesson that afternoon & when I got there was mixing it up with the other kids (appropriately) with no tics interrupting him at all. On the way home in the car he asked me if we could get to work on his wizard robe, so I told him we'd get started after I finished folding laundry. He patiently tried on my Jedi robe (we're using the same pattern), which fits him (!) so I didn't have to alter the pattern at all, then helped me pin the pattern to the fabric. He played with my legos (a few years ago they had an animal creator set that he wasn't interested in, so I got it for myself :) while I cut the pattern out, asking me questions about what I was doing (marking things with tailor's chalk). I was still feeling energetic before dinner so I made apple pancakes from scratch, with veggie sausage on the side (for Charlie & me- Brendan won't eat anything veggie that's shaped like meat). After dinner the other members of our church quartet, Jessie (alto) & Ed (tenor) came over to rehearse some music for up-coming services. Brendan played Adventure Quest while we learned 2 new songs. One of the songs is an old Welsh wassailling song, the Gower Wassail, that we'll sing for the mummers play on the 17th & the other is a carol co-written by Jessie's father & Pete Seeger in the mid-60's that we'll sing Christmas Eve. Both songs were fun to learn & sing, & Brendan sang along as he played AQ, so we decided that he could make our quartet a quintet this year (singing soprano with me), & he seemed interested- stay tuned :)

Today did not go nearly as smoothly as yesterday. Brendan was just not quite as plugged-in... He started out by sitting on the heating vent in his room for 10 minutes while he was supposed to be getting dressed. We managed to catch-up time-wise, but it was a near thing getting out the door on time. He settled-in at school quickly, like yesterday, & I am beginning to think that he's finally gotten used to school. I checked-in with Cherie to let her know he had an appointment to see the eye doctor at 2:30, so she said she'd have his stuff ready for us to fly out after music (which ends around 2:10). I got there a bit early to pick him up & watched the end of music class. They were finishing with a game of "Killer" (aka "Wink", where someone "kills' others by winking at them, as the whole group sits in a circle) & Brendan was definitely over-the-top, behaviour-wise. He was attending to what was happening & engaged in the game, but was so loud & goofy & impulsive that the poor girl sitting next to him asked him to cut it out. While I was waiting, Cherie told me that the boy he usually plays with during outside time had gone home sick, so Brendan had joined in a game of soccer with lots of other kids & had had a good time (he told me in the car that he'd nearly made a goal). The game that Brendan usually plays, which they call "The Pokemon Game" is very imaginative, where they play roles in a story about various characters (pokemon, Mario characters, superheroes) & it's very convoluted & intense. The game doesn't appeal to many of the other kids, though, & Brendan has had trouble in the past when he's tried to do other things during outside time, since he's the only one who'll play this game with the other kid & this kid isn't above guilt-tripping him if he doesn't want to play. It was pretty neat to see Brendan excited about playing soccer with a bunch of other kids, although I suspect that he'll go back to the comfort & familiarity of the pokemon game. My stand on playground time is, as long as he's having fun, & not being teased, then I don't see much reason to mess with it. When we were in the car on the way to his eye appointment I mentioned that I'd seen the girl in music class giving him feedback that he was too loud, mostly because I didn't want him to disregard her feelings. He barely remembered her speaking to him, so I asked him to think about how he might feel in the same situation, & to try to listen to what his friends are telling him. There was definitely an element of impulsivity to his behaviour all afternoon. He cooperated really well at his eye appointment, even with the drops (which used be to just horrible for him). He also asked about every piece of equipment in the room, politely, but in a driven sort of manner. His doctor decided he was old enough for the glaucoma test where you get a sudden burst of air in the eye, & the "old enough" comment intrigued Brendan quite a bit. When the air hit he jumped & said "oh ssssshhh..." but didn't complete the word, which pleased him immensely (& made us all laugh), but the best part was that he sat still for the other eye to be tested :) Happily, his vision is still fine (both Charlie & I have been wearing glasses since we were his age, so it is a concern) & his binocular convergence & tracking are still very strong, thanks to the years of therapy.

Brendan got right on the computer for AQ when we got home, & I had good intentions of working some more on his wizard robes with him, but I fell asleep on the sofa instead. Sigh. I woke up with him fussing loudly at the game in time to make a less ambitious dinner of tofu & rice & edamame. Brendan was still behaving really compulsively at dinner, insisting on having a fork as well as hashi (chopsticks), until he knocked the fork on the floor because it was in the way of his hashi... by the end of the meal I was rather frazzled with the loudness & random behaviour & he was feeling bad. Charlie had a considerable amount of work to do at home, but he spent time playing a card game with Brendan & then sat with him while he was being frustrated by a part of his AQ game. I cleaned up after dinner & started writing this post. Bed time started out fairly normally, but I noticed as I read to him that Brendan wasn't settling down as he usually does, but was restless & whispered to himself for a bit, until I asked him to concentrate on what I was reading instead. After an hour of reading I decided to stop & see if he could fall asleep on his own (one of the goals we've been working on), but he just revved-up & began ticcing so intensely it sounded like he was going to vomit. Charlie came in & we decided to watch an Kim Possible episode on my laptop (in the tv room, where the vcr was already taping another show...). Brendan seemed more settled after that & ready for bed, but he decided that he had to have a certain flashlight to take to bed with him, & then couldn't find it, & couldn't concentrate when I tried to read again, & finally spiralled right back up to major tics again... he kept moaning that they (the tics) were going to kill him :( So I brought the laptop into his room & we watched another KP sitting on the bed, which took us up to 11:00. Brendan was finally sleepy & just wanted to have a "quick minute", & it didn't take but 5 minutes for him to fall asleep.

Whew. We haven't had an evening like this in a long time (thank goodness). It was nights like these that made me wonder if the extreme anxiety wasn't going to end up with our having to take him to the hospital someday, but we've managed to help him stay safe so far & each time, though exhausting & disturbing, we seem to be figuring out what to do to help him finally get to sleep. I just wish I understood what was causing him to be so wired all day. My mind jumps to the new medicine, but it really is too soon for it to be in his system enough to be causing problems (just one week on a minimal dose...). It was also particularly odd for him to have such an out-of-control-ish day after having such a great day yesterday- Brendan's cycles of ups & downs usually last longer... All we can do is watch him carefully & hope it's "just" a pre-adolescent blip.

Sunday, December 03, 2006

Friends & sniffles & an anniversary...

Another whirlwind-seeming weekend...

It's definitely a challenge to find things Brendan would rather do than play Adventure Quest on non-school days. We monitor the time pretty closely & try to give him a break every hour to hour & a half. Yesterday we did have japanese lesson after lunch (Tomoko is doing all the final work on submitting her master's degree project, so she missed last week's lesson & pulled a couple of all-nighters this week). Brendan is still having trouble sitting through a lesson, due, I think, to there being less zoloft in his system. He's generally much more randomly active these days- hopping up in the middle of things, which is not his usual thing. But he did tolerate most of the lesson, which included a dialogue between InuYasha (dog half-demon), Kagome (schoolgirl), & Miroku (buddhist monk friend with a wind-tunnel in his hand). Brendan did both of the guy parts, which meant he was reading twice as much japanese as I was (I was Kagome), which was good because he's the one who needs the practise :) He had both Tomoko & me laughing with his wind-tunnel sound-effects. He's an amazing mimic... We also had fun just chatting with Tomoko about favourite InuYasha episodes, which was a good thing for Brendan to participate in because he still doesn't understand the flow of that kind of conversation very well yet & it's a skill he needs for interacting with other kids.

Within about an hour of the end of our lesson Brendan's best buddy E came over & they spent quite a while playing with the lego spybots before the lure of the computer overtook them :) Brendan started an Adventure Quest game for E & E shared some Club Penguin games with Brendan (at one point they asked to use my laptop & were on 2 computers simultaneously playing the same game...). Charlie & I had fun chatting with E's dad & introduced him to one of the Ice House pyramid games that I had gotten Charlie for his birthday last year. When E's mom came over after work we had pizza together. Brendan was definitely tired after his afternoon of constant play (& japanese) & fell asleep during one of the more exciting parts of Susan Cooper's "Silver on the Tree", the final book of the "Dark is Rising" sequence.

This morning we were up early for church because of an early choir rehearsal. We are getting ready for our annual choir holiday programme, next Sunday, so need the extra time to sing. Over breakfast Charlie worked with Brendan to solve the problem of how to overcome OCD tics about the church computer in the aftermath of last week's disastrous Sunday School session. Having so many unfamiliar kids playing on the computer gave him a tic & he didn't want to touch it, even though Adventure Quest is his favourite thing & how he's been keeping himself busy during choir practise for the past couple of months... They finally settled on wiping down the monitor & keyboard with damp wipes, & I'm convinced that it was imagining what would happen if the wipes were too wet (zap! zap!) that charmed him into accepting this solution. It was the same with his OCD-based worries about having nitrous oxide for his recent dental work- once we started getting silly about how "The Elegant Universe" would look when "on" nitrous he decided it would be ok to do... And the wipes worked just fine, which was wonderful. He did really well at church today & was quite happy to get back to his regular Sunday School classroom & teachers. I worked on the script for the mummer's play Charlie & I are organising on the 17th (featuring all the Sunday School kids, various adults, & a dragon) during Sunday School, since none of my kids were there & I had my laptop at church for a meeting after the service. Charlie had a meeting, too, but he & Brendan still beat me home, after stopping at the store for some fritos (to go with the veggie chili Charlie was making for dinner) & cheetos (at Brendan's request :). After I ate lunch I wrapped my gifts for Charlie (all in furoshiki cloths) for our anniversary today. We shared our gifts after one of Brendan's breaks from AQ, & it was just nice, relaxing, & fun. This whole day I've been reflecting at various moments that, no matter how stressful church stuff or Brendan stuff or pretty much anything can be, we really do manage to find enjoyable moments together. After 18 years of being married, we are just happy to find time together, share what we're thinking, share something funny. It's very comforting :)

Brendan has developed a sniffly nose throughout the day & sounds really funny now. We quizzed him over dinner, when he looked at his food & told us he wasn't hungry, to see if he had a yucchy stomach or headache. He couldn't tell us anything definite, but we decided that his tummy was definitely "off" & had him just have some milk since that's what he felt like. Brendan wanted to get back on the computer but we said no, so he sat on the heating register instead & warmed his butt & filled his shirt with air & giggled until we were done eating.

Charlie wanted to do something on the computer after dinner, so Brendan & I took a look at this neat clip from TV in Japan- little vignettes celebrating 30 years of "Supa Sentai" (aka "Go Rangers" aka "Power Rangers" in the US, sort of). Brendan is a Power Ranger fan & loved seeing brief clips of all of the series of past Go Rangers, introduced by a madcap group of japanese teens. He's had a bath now & decided he was hungry, so dad made him some veggie "no-chicken" soup (from a can) & we decided he'll have some tylenol, too, before bed. So... tomorrow could be exciting. Will he feel fine? Will he need to stay home from school? Only the morning will tell...

Friday, December 01, 2006

Life is an Adventure Quest...

Thump, thump, thump... Brendan is supposed to be dressing for school, but I can tell he's having trouble with tics, thanks to the frantic thumps coming from his room (made by foot hitting the floor, not any other part of his body, thank goodness- I know this particular tic...). Yesterday at school, unfortunately, it was his head hitting a window, which we didn't discover until Charlie gave him his bath last night & asked about the bruise on his forehead... Other than the obvious problems with heads hitting windows hard enough to bruise (nothing broken this time), the tics themselves are very intrusive these days, distracting him from what he wants to be doing & in some cases preventing him from doing things. I verbally checked in with him this morning, hearing the thumps, & he responded something indistinct about the "darn tics", but was eventually able to finish dressing. I went in to open his curtains & he was fuming about how hard it was to handle them. He said that it was like constantly being under attack, with no way of winning. For some reason, I immediately thought of Brendan's current favourite online game these days, Adventure Quest.

I've never been a big fan of bash 'em up computer games, preferring puzzles & games that make one think, & have tried to steer Brendan to these more educational types of games as well. We have always had a policy of no guns of any sort since Brendan was old enough to have toys. Even the squirt guns have to be shaped like other things ("spitting fish" was an early name for one of Brendan's water toys). This is what life is like when your father is a registered Conscientious Objector & mom had lots of disabled Vietnam vets as friends during her wheelchair basketball days, & both parents feel that kids are exposed to too much violence too soon these days. Our philosophy doesn't seem to have hurt Brendan (so far) & we've had a lot of thoughtful discussions with him about appropriate ways to vent strong feelings, like anger, so that he still can get things out of his system. We haven't gone quite so far as to ban any weapon toys, although I kind of felt funny about getting him a toy lightsabre when he was a Jedi for Halloween a few years ago. However, seeing him do the "moves" he'd seen in Star Wars once he got the sabre was worth all the funny feelings in the world- the kid was good! My normally 2-left-feet kid looked so cool with that sabre...Made me wish he didn't have such an aversion to martial arts... but that's a whole other topic. In any case, we've used the same low-violence guidelines when helping Brendan choose games, & the taste he's developed over the years has followed in our footsteps. When I first saw him watching our minister's son play Adventure Quest on a computer at church I wasn't so sure about it. An awful lot of bashing & monster fighting going on... but there were no guns involved, & there also seemed to be an element of strategy & tactical thinking, so neither Charlie nor I objected when he wanted to play at home.

As with many of his obsessions, Brendan has been learning a lot from the intersection of AQ & real life... how to cope with the frustration of not being able to log-in because too many others are online (there are only so many spots for non-members)- we set a timer for 10 minutes & told him he could check the site only when it went off, which worked very well; how to save his money for something he really wants- a $20 one-time membersip fee that now allows him to log-in without waiting; how to manage his "finances" (gold he earns from battling monsters, used to buy tools & armour); how to keep track of more than one set of points, so he can gauge whether or not he has enough to beat the monster (lots of coaching from us).

So it hit me this morning, when Brendan mentioned the feeling that he was constantly being attacked by his tics & not able to do anything about them, that AQ is a very good metaphor for how he really is managing. I told him that it may feel like he's not making progress with the tics, but that I see him having done a lot over the past 2 1/2 years (that he's had tics) to learn how to live with them. I reminded him that, for example, he couldn't go into JoAnn Fabrics in the early days because there was too much stimulation from all the stuff there, & that he'd gone there with me just a week ago to choose fabric to make him a new wizard robe without any trouble at all. Then I told him that it all reminded me of his Adventure Quest game. At the beginning he was really inexperienced & made lot of mistakes & got creamed by the monsters. These days the frustration is much less common, & he has collected an impressive array of tools & pet helpers that he intentionally put together to counter the widest array of monsters. He still occasionally runs into trouble because he gets stuck on using the same tools or pets all the time (he still needs to work on the flexibility of his thinking) but he's made great strides & feels really good about it. My hope is that he'll get in the habit of reflecting on his life skills in the way that he's learning to think about his progress in AQ, & maybe the feeling that he's not rising to the challenges will abate some. Who knew the game I felt so ambivalent about would provide such an apt metaphor for his life right now...? (It doesn't hurt that AQ has a strong undercurrent of humour, too, as in the "Snow Bunny Zard" monster he encountered this afternoon, complete with cute ears & ice carrots as a weapon- mad brilliance...)

Charlie took today off work, mostly so we could go out to lunch to celebrate our 18th wedding anniversary (this Sunday). We also managed to get my car in for it's annual inspection, get Brendan to & from school, & get me to the dentist to have a crown re-cemented, all before 3:00 pm. Lunch was really nice, we even had wine (not something we usually do at lunch for obvious reasons) & designed the head of the dragon for the mummers play we're organising for church on the 17th- a true creative collaboration :) (We did a similar thing 19 years ago, going out to dinner & designing our wedding rings as we chatted through the meal.) It rained really hard for a goodly part of the day, & I managed to slip & fall into a puddle when we picked Brendan up from school, banging my left knee again & requiring a trip to the office for ice & sympathy :) And... in spite of the post-fall achiness, I actually ran the first indigo vat this afternoon. Hooray!! I tied some furoshiki (wrapping cloth) squares for shibori (japanese tie-dyeing) to test patterns I might want to use for the hippari top I made to indigo dye, & did a bunch of t-shirts & few of the skeins of yarn before the vat got too cold. Now that it's made I can revive it on & off until I'm done- which could be a while, since I decided it might be nice to shibori-dye some scarves for Brendan's teachers & therapists as holiday presents. I also pinned him down yesterday about what he'd like to do for his teachers & he decided he wanted to bead some bracelets for them, so he picked some nice faceted glass beads out of the Fire Mountain catalogue & I ordered them. He's been enjoying making beaded things lately for the jewelry sale at school to support the Heifer Project, so I think making the bracelets will seem less chore-like that gift making has been other years- it's hard to help him imagine giving a gift from his heart when his heart isn't in it... :)