Wednesday, January 31, 2007

Mental crutches...

First off, here is the wizard "Glacius" :) Brendan was really pleased with how his wizard robe turned out, & when I asked him the name of the wizard he's pretending to be, he told me it was Glacius & then provided a half-hour-long monologue on Glacius' origins. We have since turned this into the seed for dad's birthday present & I spent the better part of an hour yesterday scribing the first chapter of the first book about Glacius' life. I think Charlie will be pleased to receive it, & it's fun to get it all on paper (uh, laptop :). Makes me even more anxious to get the voice recognition software going for Brendan. He sure is having a great time wearing the robes around the house & is now thinking of appropriate embellishments for his staff...

I think that one of the hardest things in the world is to drop a well-functioning kid off at school & pick him up at the end of the day a quivering mess... sigh. It would seem that we are on a shake-down cruise when it comes to Brendan's box, with lots of chef's stirring the broth & the attendant difficulties. When we first got to school Brendan's teacher, Jen, wanted to figure out some rules for the box- essentially, times when it was ok for him to be in it or not. Cherie & I were a bit concerned, since the purpose of the box is to be a retreat when he can't cope with things, so I asked Jen what he should do if he was feeling distressed & needed to get in the box in a non-sanctioned time & they figured out a hand-signal for Brendan to use (he loves that sort of thing). So far, so good. Then she wrote the times that she felt it was ok for him to be in the box on the corner of the whiteboard & showed them to him. Again, I was a bit concerned, but she was clearly feeling that boundaries needed to be set, & didn't want to have to interact with Brendan about the box (for some reason) with the other kids there. I guess the morning went very well, which was no surprise, since when I left him he was sitting at his desk doing his morning work. That Brendan can sit at his desk & work is a sure sign that he's feeling comfortable & well-regulated.

I got a call from his speech therapist (who sees him every day at school) around 1:30- she wanted to fill me in on the disastrous afternoon so that I would be better able to pick up the pieces when I got to school... I guess he was eating lunch in his box when she arrived to do a lunchtime stint with him (to assist with socialisation) & he really objected when she asked him to get out of the box. She had 2 main concerns at this point- that he was eating lunch while lying down (with the potential for choking- something we hadn't realised & a concern I share!) & that he should be spending his lunch time socialising with the other kids. Ahhh, but you see, his teacher had written on the board that lunch time was one of the times he could be in the box... so Brendan erupted in distress at his therapist's request to leave it. He was so upset that he hid twice on them (once they almost called me at home because they simply couldn't find him, but he heard them talking about calling & came out before the call was made), missed outside time (which he'd really been looking forward to) & music class (which he often enjoys). There was concern that he might be retreating to the box just for fun or to isolate himself, rather than using it when he really needs it, & I know he was really angry & upset, with resulting unpleasant behaviour. Here's the thing, though, I believe that what really went wrong was the attempt to regulate his safe space, which in essence, made it unsafe (his own words). Certainly, when I got there, Brendan wasn't angry at his therapist at all (the person who had asked him to get out of his box in the first place), but was really angry with his teacher. He admitted, tearfully, that he'd erased what she'd written on white board, about when he could go in the box. I sensed he was feeling betrayed. I also sense that there's something else going on, from his teacher's point of view, that we aren't aware of yet.

Getting Brendan out of the school building in his state of agitation (remember that he'd been in distress since noon-ish & it was now 2:20-ish...) approached a comedy of errors, without the comedy. While getting his coat & boots on at his locker, the boy in his class most likely to trigger Brendan's tics came out to his nearby locker, saying that he needed to get his stuff (although nobody else was getting theirs together). This kid seems magnetised to Brendan when he's in distress & we have trouble redirecting him away from Brendan, who only freaks out more when he's nearby (when Brendan's feeling fine they are good friends...). I finally explained that Brendan was upset & could he please go back into the classroom until Brendan calms down, to which he replied "tell Brendan goodbye for me" (which, perhaps irrationally, I find irritating because it feels like he's treating Brendan like a sick person...). Then, with coat & paraphenalia in hand, Brendan & I headed for the door only to have the other kid who triggers Brendan waft by... Cherie was with us that this point, signalled the potential trouble to me, & I wrapped my arm gently around Brendan's head & led him out the door to the stairs, so he couldn't see the kid. It was like running the gantlet... Cherie was very sweet & empathetic & wished us a better afternoon. She & I had chatted before going in to get Brendan & she understood my concerns about the attempt to regulate Brendan's box usage (Jen had not discussed any of this with her before approaching the subject with Brendan that morning). We agreed that we need a mini team meeting to sort it all out.

So, here's the thing- it seems to me that Brendan's major life-work these days is self-regulation- learning to take his internal, emotional pulse & then behave accordingly (& appropriately, in all senses :). It's not an easy task for anyone, but for a 10-year-old with lots of neurological differences, it qualifies as major work (in my opinion). So, to try to regulate Brendan's box time seems to me not a good way to help him learn to self-regulate. When Cherie & I were talking, it seemed to me that one of the issues was that no one could be sure if he was using the box as he really needed to, or if he was hanging out in there as a cop-out, to avoid interacting with others. This really got me thinking about trust. On one hand, we have a kid who is still learning how to figure out what's going on inside himself, so, yeah, it's not easy to trust that he's acting out of true need. He's also a 10-year-old boy, who is (autism stereotypes aside) perfectly capable of bullshitting the unwary to get his own way. He is also someone with some severe impairments in his ability to cope with the world around him, & no matter the flashes of brilliance we see from time to time, he needs a lot of support. The whole box thing evolved as a way for him to have necessary support in order to function at school, but it's clear that we're not all on the same page concerning how it can support him. I'm wondering, too, how much his "flashes of brilliance" may sometimes shoot him in the foot by making him appear much more capable than he is. One of the joys of school these days if the class play & I have been really enjoying the almost daily reports of Brendan's accomplishments. His teacher says he is a brilliant actor, she's just in awe of him. I love it- I love having a brilliant kid. But I'm wondering if this contrast in abilities is making it harder for folks to understand/imagine his intense needs, too.

So I started thinking of ways to imagine the box... & came up with the image of crutches. This hearkens to recent discussion in Kristina's AutismVox blog about autism not always being an obvious disability & reminds me of chats Brendan & I have had on this subject. When the OCD & Tourettes began to make Brendan's behaviour in public significantly different (as in outre), we needed ways for him to understand that he was the same ok person as before, so we started imagining how life would be for a kid who is blind or in a wheelchair, someone with an obvious disability. We talked about how his differences are just as real as a child's whose difference was obvious, & that any person with a difference is a valuable person. From time to time we've revisited the subject, especially when Brendan's been feeling bad about the tics. It's not easy for a kid with an "invisible" disability, that causes him to be obviously different in a way that is misunderstood by most people. So it doesn't seem so farfetched to imagine the box as a visible sign of his differences, "mental crutches". And, actually, by imagining the box as an important support, I can also see some of the difficulty it brings with it. We, as a society, are conditioned to see crutches as bad, as the need for a crutch as a sign of something wrong with the person who uses it. Wrong- bad. This is a powerful & pervasive stereotype. I know because I used crutches & a wheelchair for most of my teens & up into my mid-twenties. I lived it, & any time I have had to "regress" to using a cane or crutches it has been overwhelmingly seen as a bad/scary thing (to everybody but me). The thing I learned is that for many, many people crutches represent freedom. It allows them mobility. Crutches=good. It seems paradoxical to general society, but there it is. So, by extension- box=good!

This morning Charlie took Brendan to school. He & I had brainstormed last night some responses to yesterday's events. Brendan was nervous this morning- he was afraid that he'd do something "wrong" again & have another rotten day. I told him, honestly, that I didn't think that he'd done anything wrong (except to scare his teachers by hiding). I told him that the box is a new thing, & he supplied the corrolary- "& with new things there are troubles." I told him it was a shake-down cruise, like on a new boat, & we had to work out all the kinks. Charlie had suggested putting together a card with statements like "I am in the box because I feel distressed." & "I can eat lunch in the box if I am sitting up." & "I will come out of the box for OT & Speech unless I'm really distressed." that Brendan can carry in his pocket & show to anyone who tries to get him out when he feels he needs to be in it. I also explained the trust issue to Brendan, by mentioning that people can't read each other's minds (we agreed that was a good thing :) & so it's hard for his teachers to know if he's in the box because he needs it or because he's just trying to avoid people. He asked me which was wrong (!), so I explained that they really want him to do his best & be with people as much as he can, & only retreat when he really has to. I also said that I thought that his being told when he can go into the box was not a good thing & that we are hoping to re-establish it as his safe place. I also mentioned the crutches idea to Charlie, just so he'd have it in mind when sorting things out at school this morning. I told Brendan that he can always call me at home if he needs me, & Charlie said he'd ask the folks at school to call if things got out of hand again.

When Charlie called to let me know how things had gone when they got to school, he said that everybody seemed to feel bad about yesterday & understood that rethinking was necessary. The card idea was immediately approved, & Charlie left them writing out the statements on a 3x5 card. Brendann seemed comfortable & engaged. Whew. Charlie warned me that I might not see them for a while after school :) There's birthday shopping to be done- next week is birthday week! Charlie is the 6th, I'm the 7th, Grammie is the 12th, & my best friend Roo is the 17th- so if Brendan's in a good frame of mind they will head out to shop & then perhaps stop by Charlie's office to check out his new voice recognition software (to use for dictating) &, essentially, whet Brendan's appetite (or test the waters). And, now, I must get to my own preparations for Charlie's birthday, with one ear listening for the phone, of course... :) And, finally, at mcewen's request, a wintry picture of the house (to be looked at while snug & warm).

Monday, January 29, 2007

Wintry update...

Brendan managed to convince us to let him sleep in his box last Thursday night. He was off school on Friday, so any sleep disruption would not affect school... As he was tucked-in (with sleeping bag, pillow, & Rufus) I worried that he might wake up in the night & not know where he was, so we added a flashlight, tucked the top flap in, & he was snug as a bug.

I read to him as usual, although it was harder to hear the heavy breathing that indicated that he was asleep :) He did, after some initial scrabbling around to find a comfortable spot, fall asleep. There were no yells in the night, although he did tell me next morning that he'd awoken at 4:00 am, tried to fall back to sleep, & then got up & read at 5:00. He was no worse for the wear on Friday, but decided that the box was not the best place to sleep :)

I had once again made a list of things to do so that our day-off would be focused & fun. The list included making banana muffins, working on his wizard robe, working on our japanese, & watching InuYasha, as well as stints playing Adventure Quest (for Brendan). I was nearly done with the first shawl for the church service auction (this coming Sunday) so wanted to finish, wash, & block (stretch it out with pins to dry) it. In all, between Friday & Saturday we worked through the list & both got done what we wanted to, which was good! Brendan's tics seem to have backed-off in frequency lately, but increased in intensity when they do occur. The lesser frequency does seem to be making things easier for him, though, & for us as well. He didn't really want to help make the muffins on Friday, but was happy to keep me company. It was a very cold day (our local public schools cancelled that day due to the cold) so Brendan didn't get to go outside to play, & he spent a lot of his non-AQ time sitting on the floor vent in the dining room to "warm his butt". We did some work on learning the katakana alphabet & reviewed some conversation for our lesson on Friday, but he was really more focused on watching InuYasha... since we watch in japanese, he's definitely getting some language stuff from it (I know I do). I made blueberry pancakes for dinner & grammie came over as she usually does on Fridays. She was mourning the loss of her uncle, the last remaining member of her mother's family, who had passed away last Wednesday. She had called him just a few days before, so was glad to have spoken to him one last time. "Unc", as he was known, had been a Marine in WWII & seen heavy fighting in the Pacific, plus was the family historian, & fortunately passed everything on to my mom before he died, so she's planning to bring it all over so I can copy it. I have read some of his reminiscenses & they're pretty amazing.

Saturday we finished his wizard's robe- hooray! I set in the sleeves & sewed the sides while Brendan read to me from "Eldest" & then he stitched the long hem seams (with my guidance) after I ironed & pinned them in. The sash still needs to be made, but that's today's project. I'm looking forward to seeing him wear the whole ensemble, since it's of his own design (colour-wise) & has really sparked his imagination. We had a great japanese class with Tomoko in the afternoon, We're still working on conversation relevant to our visit to Japan, & once he'd gotten permission (easily granted) to participate while pretending to be InuYasha, it all went very smoothly :) He'd also thought of a game, involving his InuYasha action figures, that was a lot of fun. He would pose them & then we would think of sentences to describe what they were doing, which then Tomoko would translate into japanese for us to learn. He was very interested in ways of describing how they were using their swords, bows & arrows, etc, & I think it's because he's been interested in creating japanese names for the special "moves" his lego characters have. He sometimes confounds Tomoko by asking for random words like "dimensional" & "wave", faithfully memorises them, then combines them into names for the various weapons & "moves". We also told her about a project we've decided to begin, a picture-book describing his life in the US that we'll translate (with her help) into japanese & take to Japan with us to give to her nephews & his penpal. She liked this idea very much, & mentioned that her sister is working on the possibility of our visiting her nephew's school while we're there. That would be sooooo cool!

Saturday evening we started watching a production of Mozart's "The Magic Flute" that Charlie taped from PBS recently. We've been watching half an hour or 45 minutes before bedtime & it's been really wonderful. We have a children's cd called "Mozart's Magic Fantasy", an adaptation of the opera with more dialogue & added characters, that Brendan just loved when he was younger, so he's enjoying the "real thing" very much. This production is absolutely amazing- heavily influenced by the Lion King, with the use of puppets & larger-than-life costumes. The singing is superlative, too, & I've never heard the role of the "Queen of the Night" sung so naturally, without any sense that she's straining for the high notes. Brendan seems to be enjoying the music as much as the staging & humour (their Papageno is a hoot- played very broadly with lots of physical humour ala Harpo Marx) & it's been fun to discuss over breakfast the next day (often initiated by Brendan).

Sunday was a way-busy day. Both Charlie & I had meetings after church & Brendan ended-up visiting at a Sunday School friend's house while Charlie met with his dad, while I stayed at church to slog through music committee things. I had a migraine well on the way by the time I got home (nearly 3:00). Brendan & Charlie had gone to the library to find a movie that Brendan had heard about from another church friend ("Cats & Dogs") so they spent the rest of the afternoon watching it (and laughing uproariously) while I dozed on the sofa, trying to get rid of the headache. Brendan had had a wonderful time visiting while Charlie had his meeting & has been wholeheartedly welcomed back any time. What I found very neat was that he didn't show any sign of strain after his visit. Sometimes he exhausts himself from holding back tics & doing everything he can to behave his best when he's at friend's houses, & then comes home & decompensates all over the place, but there was no sign of any stress or strain, which was truly a gift. He was pleasant & friendly the whole rest of the day. He begged to watch an extra 15 minutes of Magic Flute at bed time & was doing so well that we did.

He was not happy to remember it was a school day this morning, but the sight of all the snow that had fallen over night really cheered him up. He's been waiting for enough snow to fall so they can make "mole holes" in the snow piles at school (last year there was practically no snow or snow fun where we live) & determined this morning that it was time... The kids will be able to go out as long as it's not too cold. I took pictures of his snowy school & schoolyard for our picture book, since the place in Japan where we'll be taking the picture book has no snowfall. I also took pictures of our snowy house this morning. It really is pretty & feels like we're finally having a "normal" winter, although the driving sure is exciting... Hopefully Charlie & Brendan will be able to get out cross-country skiing before it all melts, since last year was a bust for any kind of skiiing. Fingers crossed for the snow play today- I'm off to make a wizard robe sash...

Thursday, January 25, 2007

The box...

I mentioned in my previous post that Brendan had adopted a box (brought to school to be used to make the set for the class play) as his safe space. The original box was a bit small & fragile for the purpose, though, so (after consulting with Brendan's teachers) Charlie & Brendan went out after school yesterday & came home with not one, but two wardrobe boxes... The larger of the two has been assembled in his room & now has a periscope poking out of the top :) He is gleefully planning to sleep in it tonight (tomorrow is a teacher inservice day, so he's out of school), although he did ask me, rather worriedly, this morning if I would still read to him at bedtime if he were in the box. I assured him that I would... :)

The smaller of the two boxes was loaded into my car & went to school this morning. By smaller, I mean 4' long instead of 6'... It was quite a production getting it up the stairs to the third floor, especially as I was depending on Brendan to hold the doors for me (!), but it was soon assembled & taped together, & as you can see in the pictures, has found a cosy place where it's not in the way, right behind Brendan's desk, as a matter of fact.

Brendan's teachers seem delighted by the box solution to the "safe space" problem, so it feels very much like a win-win :) He's been making his classroom teacher, Jen, laugh for the past few days by poking his hand out of the box & making appropriate gestures (ala "Thing" from the Addams Family) when she asks him questions, rather than answering verbally. The other kids in the room seem quite unfazed by the box thing, too. In fact, we had our first "box crisis" this morning when the new, improved (roomier, cooler) model arrived...

When I returned upstairs to say goodbye to Brendan after doing my door greeting thing, I discovered that he'd allowed at least 3 of his classmates into the box. From a socialisation point of view, this was great, but from a "safe space" point of view, it sent me into a bit of panic. In fact, one of his main tic trigger-classmates had already been in the box & was playing practically on top of it when I came in... I found Jen & Cherie & told them that I was concerned about Brendan allowing people into the box because of his tendency to develop tics about things that have been "contaminated" by others touching them. They agreed wholeheartedly, & the three of us headed into the classroom to sort things out. We took Brendan aside & explained our concerns, making sure to validate the good will with which he acted by allowing his friends in. He was a bit stormy at first, but we were able to convince him that it was for the best to keep that box his personal space. As I was leaving, I noticed that the teachers had set everyone down & were explaining the no-visiting rules about the box, which included a foot-wide no-entry zone around it. I breathed a sigh of relief.

It was kind of funny... when Jen, Cherie, & I were talking about the box & how to keep it safe for Brendan, I kind of spewed out "...and I don't want to have to haul another one up those stairs!", followed-up by a rueful "I mean, it's not just about me... I want to keep it safe for Brendan, too...". They both laughed & Jen assured me that it was ok for it to be "about me" sometimes. I told them that this is one of those things that's been at the forefront of my mind lately- how much of it all is "about me" & how much is about Brendan... It was good to have validation from his teacher (& a fellow parent) that it's ok for it to be "about us" sometimes too. I have been very worried lately about how much of the conflict at home lately has been due to my uptightness, & how much is due to Brendan's being a bear. Charlie & I talked about this over lunch yesterday, & he's seeing both as factors, so we brainstormed some ideas to help me behave less like I'm criticising & more like I'm helping. This morning, I let him know what time I'd like him to be done with breakfast & ready to brush his teeth, so that instead of saying "hurry up" all the time, I can couch it as "how much time do you have left?" & let him take responsibility for what he does when... I only had to say " much time?" once this moring & he figured it out easily & was very pleasant about it. A small step, but in the right direction...

Tuesday, January 23, 2007

Trying to keep up with life...

I've been trying to figure out why I've had such a tough time updating the blog lately & it seems mostly to be that I'm tired. I've been just keeping up with life for the past few weeks (months?) & yesterday I simply didn't do a very good job of that, either. There is no question that life in this particular corner of the New Republic is very difficult when I'm too tired to cope, so I'm working on it... I went to bed an hour earlier last night & that's a start. I think that I've been staying up too late every night partly because I'm getting my fill of necessary quiet time & partly because I've not found it much help when I do go to bed earlier, since I don't sleep soundly. I was reading an issue of Newsweek featuring menopause that Charlie brought home from work for me & it was very interesting & informative. I think that the sleep issues I'm having are very much due to menopause issues- case in point was this morning, when I woke up at 4:59 with a hot flash & had to throw off the covers, I was so hot. Then I dozed off, & thne woke up because I was freezing... This happens nearly every night at some point. Charlie & I are quite sure that the fibromyalgia I was diagnosed with last fall is due to menopause-related sleep issues, too. It is actually a comfort to know that this will all clear up in time. But I have to find strategies to cope NOW. Having 2 people in this household who are undergoing hormonal changes at the same time is not very good timing, since Brendan's flashes of adolescence can conflict mightily with my flashes of menopause, with poor Charlie left holding the bag. But it's what we're doing, so we have to figure it out.

There is fun stuff going on, as can be seen in the photo of Charlie & Brendan enjoying the snow. Brendan adores the snow & plays out in it nearly every day. The kids next door joined the fray on Sunday & they all (including Charlie) had a great time. Another activity that we all enjoyed over the weekend was watching the movie It's Mad, Mad, Mad, Mad World. Charlie found it at the library last week & had fond memories of watching it as a kid (it seems they showed it every Thanksgiving Day in Pittsburgh...) so he brought it home. We started watching it Friday evening with Grammie & it took us the rest of the weekend to finish it, since it was over 3 hours long (it was on 2 vhs cassettes). It is hysterically funny- one of those early 60's movies with nearly everyone known to early tv & old movies in it. Brendan ate up the slapstick & I had fun identifying the actors (an amazing number of cameo appearances). I think Charlie enjoyed the trip down memory lane... :)

The not-so-fun stuff has Brendan really wrestling with the OCD/tics these past few days. They would hit him (& us) unexpectedly & leave everyone gasping for breath afterward. Many things were triggering them, so we couldn't really adjust the environment to help out. He had a really tough time on Saturday with japanese lesson. We'd missed a week because Tomoko was out of town taking an exam that she needs to finish up her masters degree. Things started-out all right with lesson last Saturday, because Brendan asked her to come upstairs to read some of his legos to him (his Sentai Fortress lego has graffiti in hiragana on the walls, & although we can sound out the letters, we don't know what it says...). Unfortunately, when they came down I agreed to let Brendan bring one of the legos with him "so his hands have something to do" (which is a legitimate need of his), but the lego kept falling apart, which not only distracted him, but triggered a tic... I released him to Charlie so Tomoko & I could continue lesson, but he had a rough time until Charlie put "Mad. Mad World" on, which was a good distraction. Brendan's difficulty with japanese lesson led me to decide to ask his school teachers if I could come in & do japanese with him once a week. He's exempt from spanish class because he's taking japanese, so he has time, & I'm beginning to think that his tendency to think of school & home as very separate things is getting in his way when it comes to learning japanese. When I checked this idea out with Brendan we was (surprisingly) enthusiastic... I also asked him this morning what would help with our Saturday lesson with Tomoko, & he decided that his green squishy ball (shades of Kristina's Charlie) would be good to try, so we will this Saturday.

On Sunday he & Charlie took down some pictures in his Sunday School room that had been triggering him, so he was able to stay in the classroom most of time on Sunday, although I guess he wasn't very interested in participating in the activity for class. Sigh. One (perhaps strangely) comforting thing is that, when Charlie chatted with one of Brendan's teachers about how class is going, it became very clear that Brendan wasn't the only, or even biggest, problem child in class. With Brendan, at least, there is a sense of what's going on with him & that we're working on it. Not every kid with behavioural "issues" has that going for them (especially the ones who don't seem to have "special needs"). Actually, similar issues seem to be occurring in Brendan's class at school, too, so it would seem to be an age-related thing. Charlie were talking last night about how amazed we are by Brendan's teachers, coping so well with so many diverse personalities & "special" needs (not just the IEP kids, either :). It's just not an easy time of life for kids...

The whole tic thing seemed to come to a climax of sorts yesterday. Brendan began the day with severe difficulty coping, although a bright spot was that he dressed quickly & had no difficulty getting out the door. Tics/thoughts bothered him at breakfast, though, & only got worse in the car on the way to school, & I found myself swinging from compassion to exasperation. He truly was at the mercy of the tics, though, & kept moaning that he was cursed... When we got to school he barely held it together long enough to put everything in his locker, then made a run for his box... The kids have been bringing in big boxes to be used to make the sets for their class play & Brendan has adopted one of them as his safe place. He barely fits in it, but does manage to get the top flaps folded over him so that you can't really tell if he's there or not. Cherie explained that he only seems to need it at the beginning & end of the day, when things are pretty chaotic. It's good that he's found a safe place, although one kid was indignant that he was using it, rather than it being for the play sets, & evicted him with great explosions of noise from Brendan, until it was explained that the teacher has given Brendan the box & plans to replace it with another from home. Another classmate, however, made Brendan a locking mechanism for the box out of paper clips, so his taking up residence in it is not universally frowned-upon by his peers. When I came back upstairs (after managing to do my greeting gig for a little bit, trying hard not to worry about him) Brendan was still in the box, but when I went to kiss him goodbye he was ready to move on. Cherie was wrestling with her computer, so I left Brendan engaged in rescuing her :) Before going downstairs I checked-out the idea of having japanese at school & she thought it was a great idea, so I'll do some preparing during the week & start going in on Fridays after lunch to work with him on japanese. This could be a lot of fun...

Outside of a much-needed trip to the chiropracter & trip to the asian food store (also much-needed :), I spent my day mostly doing laundry & trying to rest up for when he got home from school. We've been given another InuYasha infusion, so I'm gratefully pre-watching to find episodes that Brendan can see. We're getting toward the end of the anime series, & luckily most of the hyper-violent stuff seems to be behind us.

Brendan was back in his box when I went to get him, but extricated himself & was pretty mellow on the way home. He played Adventure Quest peacefully, watched some InuYasha with me, & then did more AQ. It wasn't until the hour or so before dinner, when he was on an AQ break, that the tics started in again. By the time Charlie came home Brendan was a mess again & I was not coping well, partly because he was very touchy on top of being triggered by everything in sight. As he sat down at the table, he compulsively put some candy in his mouth just as I was serving dinner & that put me over the top, so I told him to take it out & he sat & sulked & wouldn't eat. I felt bad, but angry, too. Charlie & I sat & ate (rice & edamame- Brendan's favourite) in silence, until the atmosphere lightened a bit, then I started talking about InuYasha & encouraging Brendan to tell dad about one of the episodes we saw. That helped, but he said he had a tic about eating, & as Charlie & I tried to sort it out with him, he ended-up on the floor, rocking & moaning. I was afraid he's put his head through a cabinet while rocking, so I sat on the floor & pulled him into my lap, & that seemed to break the tic & he was able to sit up & talk to us. He wanted to play AQ, so we let him & first brought him his evening meds, then got him to agree to eat his dinner at the computer. It wasn't optimum, but I really wanted food in him, to help him feel better emotionally (he & I seem to have similar blood-sugar issues) & so we did it. For the rest of the evening he was fine, even having a giggling good time playing ExoForce with dad before bed & listening quietly as I read to him afterward. Charlie & I talked afterward about how difficult it can be to set boundaries (behavioural & otherwise) with a kid who can fly off the handle at any moment. It would be very easy to spoil a kid like that... I usually end-up doing the opposite & setting him off because I have very high standards for behaviour, & then of course we have to pick up the pieces. It is a very puzzling situation.

This morning, although he awoke with a big groan that did not bode well, Brendan was in pretty good form. I pretended to be digging for buried Brendan treasure as he huddled under the covers, & he came out to get dressed in a cheerful mood. He was fine on the way to school & I left him at his locker to go open the door for everyone, since we were running slightly late (due to more snow falling overnight & the road conditions being variable). When I came back upstairs he was, gasp!, sitting at his desk typing on his alpha smart (something he hasn't wanted to do, because of OCD thoughts, for ages...). He showed me what he was writing (a fake advertisement, for a school assignment) & wanted me to read it. It was Brendan-silly & -witty, with a touch of 10-year-old grossness & he was delighted with it. :) (I did suggest that he might want to remove the reference to fecal matter, but maybe I'm just a spoilsport.) In all, it bodes well for this school day. He'll be happy when he gets home, too, because I was able to pick up my cleaned & ready-for-action sewing maching this morning, so we can finish working on his wizard robes. Then I really have to get some sewing done for Charlie's birthday... February 6th!! I am also cranking out knitted shawls for our church service auction (while watching InuYasha- never a wasted moment :) & would like to make another for my mom's birthday (February 12th!!!), so staying well-rested is going to be key...

Thursday, January 18, 2007

Still winter...

I simply can't believe how long the ice on the trees has, literally, hung around. It's been 3 full days & still it's there. The sun's been out today & makes it sparkle. We have been very lucky that there's been no strong wind & very light snow, minimising the potential inconvenience (power lines coming down) to roads that are still icy in places.

Brendan has been enjoying the little bit of snow so much. Tuesday after school he came home &, after a mug of cocoa for snack, played outside for about an hour, came in for 45 minutes, then was out again practically until dusk. He played completely on his own (the kids next door are really busy with sports & such) & seemed to have a great time. Yesterday he even had a playmate, since dad was off work, so they went sledding on the big hill right around the corner from our house. They weren't out for long- Brendan's snow pants were at school- but they said the hill was fast, so they got a lot of runs in :) Brendan was particularly giggly afterward, particularly when he stripped his wet clothes off in the back hall (all but his boxers) & went streaking upstairs for dry ones. He's usually far too modest to do something like that, so I was surprised that he didn't just hang out in the bathroom by the back door & wait for Charlie to get him clothes.

Charlie had the chance to chat with Brendan's consultant teacher, Cherie, when he picked him up yesterday & they were comparing notes on his ability to cope with difficult situations (inspired, I suspect, by Wedneday being gym day- something that Brendan is not fond of). The consensus is that he's doing much better in the face of adversity than earlier in the fall. Cherie says that nowadays, she'll see him tic, ask him what's up, he'll tell her, & then they modify the situation. No big deal. His teacher is really pleased by how much time he's spending in the classroom, due in large part to the daily schedule that Cherie generates for him, that helps him to anticipate & prepare himself for daily activities. The incemtives we put in place when the schedule was first instated have fallen pretty much by the wayside. He doesn't ask for them anymore, & just earning the checkmarks (that represent his having stayed in class for a particular segment of the day) seem to be enough. At home we can tell things are better, partly because he's in a better mood when I pick him up, partly because he's willing to tell us about his day, & partly because he's willing to rehearse his class play lines with us (which would usually consitute homework...). It really is good to look back occasionally to see that progress has been made :)

This morning after door duty at school I wandered up to say goodbye to Brendan & found him having an OT session. His OT, Ann, had a puzzle out & was chatting with him while he worked on putting it together. She's been trying to encourage him to write more of his very imaginative stories, & I jumped on the bandwagon, telling her about my wonderful christmas present from Brendan (the first installment in a hopefully on-going story, which dad typed for him as he dictated). She's trying to get him to start using his alpha smart keyboard again, which has become the victim of OCD thoughts & is presently taboo (in other words, he can't touch it). They have been coping with this at school by a combination of having someone scribe his work for him & having him write some fo the briefer stuff himself. On top of this, his on-again off-again aversion to his left hand is back in full swing (not a co-incidence, I think) so he's refusing to use it (& occasionally talks about cutting it off -arrgh). I reminded him of what happened last time he stopped using his left hand (it became so weak he couldn't carry a glass of water in it without dropping it) so we had to limit what he could do by himself in the kitchen, since things were dropping all over the place. This blow to his independance was encouragement enough to get him using it again last time, so I'm thinking it may be time to try it again. Understanding that this problem with his hand is likely due to real sensory issues that are being made more difficult by the OCD has made it easier to wrap our heads around his sometimes bizarre behaviour around "Q1" (quadruped 1", which is how he refers to it). Mostly, we kept things pretty light while talking about his hand today in OT. Occasionally Ann would ask for both hands & kind of shake them gently into life. If the snow hangs around long enough that might help, too, since it's hard to make a snowball one-handed. :)

Tuesday, January 16, 2007

Finally winter...

Winter decided to visit our corner of the northeast US yesterday, although it wasn't a very nice day to play outside, with freezing rain most of the day. The result, iced with snow overnight, is a lovely landscape that is easier to navigate than it looks (thank goodness). We were saved from an all-out ice storm by lack of wind or heavy snow. Brendan's main concern was would there be outside time at school today (yes!) & he even asked me before we left the house this morning whether or not his snowpants were at school (they are). Not bad for a kid who does not generally think ahead :)

I was worried by having a day off school so soon after the holiday break. It was so difficult for Brendan to switch gears back into school mode... We tried to keep him busy all weekend & not let Adventure Quest be the only activity he looked forward to. He was very much looking forward to re-joining the YMCA so that he & dad could go swimming regularly again. Sigh. The enthusiasm lasted right up until he was triggered by an OCD thought in the lobby of the Y & melted down. Charlie said he kept wondering if there had been anything he could have done differently, but Brendan just wasn't coping well with life in general at that point. The upshot is that Charlie's changed the family membership he took out that day to a single one (he was planning to switch his weekly swimming venue to the Y instead of the university pool anyway) because Brendan refuses to walk into the building now. Back to the drawing-board, in our search for an acceptable physical activity for him. He did mention wanting to try archery (seems to be inspired by AQ) after his monthly visit with his psychologist last Friday, but that will take some research.

Fortunately Brendan had recovered his equanimity by Saturday evening because Grammie was coming over to stay with him while Charlie & I went to a Snipe fleet potluck. Our sailing fleet has monthly potlucks during the non-sailing season & they're such a lovely group of people, we really look forward to seeing them as much as possible. There's always something goofy going on, too, & this time there was a mustache contest with prizes. Women were invited to participate, of course, & any men who did not choose to grow their own. I had been inspired by watching the Marx Brothers last week, so I knitted Charlie a Groucho mustache out of a black boucle yarn (he made a stogie out of brown paper to go with it) & I found some grey mohair to make myself a walrus-style mustache (grey to match my hair :). It was a hoot! Some folks drew mustaches on with eyebrow pencils (there was a whole contingent in berets & pencil-thin mustaches), some had fake furry ones, or nose & glasses-attached ones, & one woman even had a red ribbon bow mustache. Charlie & I both won prizes for our knitted ones (the only knitted ones in attandance :). We got home in time to put Brendan to bed & my mom told me that he'd initiated a conversation about Grampie (my stepfather who died nearly 5 years ago), sharing remembrances & telling her that "Grampie is still alive in our hearts." She was very touched & asked me rhetorically "just how old is this kid?" Never a dull moment...

On Sunday Charlie, Brendan & I performed a song at church during the service (for the offertory). I had been wanting to sing "Walking in the Air" again (from the "Snowman" video) since I hadn't sung it in a few years & it's such a pretty song. A few years ago Brendan & I had sung it together for the service the week after Christmas (very low attendance & nobody seemed to remember us singing it before). This year, as Charlie had been rehearsing the piano part to accompany me, Brendan would chime in from the computer, so I asked him to sing with me again. As we rehearsed it over the past week, we decided to jazz it up by having Brendan sing the last line of each verse by himself. He was having a little trouble counting when to come in, so I'd gently tap his back & he'd jump right in. He did a great job Sunday morning & it was really fun to sing with him. I was unprepared, though, by the response. After the service we got so many compliments & our minister was amazed by how well Brendan sang :) I guess I've just lived with the kid too long to be surprised, though. He's such a ham... :)

Yesterday was a school break day & I made a list of all the things that I wanted to do with Brendan (make banana bread, rehearse his school play lines, write a parody song, start a new weaving project, build a kit he'd gotten for Christmas...) so we wouldn't lose focus. Also, I made the Adventure Quest rules as clear as possible, the new ones that are encouraging self-regulation (if he feels frustrated & finds himself cursing the monsters, take a break- if I have to intervene, he can't get back on AQ all day), so that it would not be a day of Brendan going through the motions until allowed to play AQ again. He really got it, too... When we did stuff together he was present & that's really what I was hoping for. After we made the banana bread we decided to invite our neighbour over to afternoon tea, since she was stuck at home in the inclement weather as well. We worked on the kit, & wrote the parody song, too, & he never one cursed the monsters in the game, chosing instead to play only the parts that he felt competent to do. Charlie had a meeting after work, so it was a long day for us together, yet really didn't feel that way. We had a lovely tea with Evelyn, our neighbour, who asked him about the trip to Japan (her stepdaughter lives in Tokyo & is one of the folks we'll be visiting while we're there). Brendan said, for the first time, that he's a bit nervous about being able to really speak to people there, which was interesting. It made me think about being more proactive about brainstorming a list of things he'd like to be able to say & making sure he has them down before we go. He is very much looking forward to meeting his penpal, Seiji, whom he's been emailing, & I also mentioned for the first time the idea of his choosing some lego kits for us to buy for Tomoko's nephews & then his helping them put them together (particularly the 6-year-old) when we get there. He likes this idea a lot :)

Brendan was moany when it came to bedtime last night- moaning about school today & the end of break. I kept telling him it wasn't a real break (a "blip"?) & he did cheer up at the prospect of a 4-day school week, but he woke me up at 6:40 this morning with a huge groan (I suspect when he woke up & remembered it was a school day). Sigh. He is doing quite well at school these days, though, & the class play is giving him much joy. Not only does he have a speaking part, but he's making some of the sound effects & has taken on the role of cue person backstage in the scenes when he's not on, helping the other kids remember when to go onstage. He's also looking forward to sharing the parody song we co-wrote at his music teacher's request (in music class they have been learning the Carpenter's "We've Only Just Begun" so we tacked-on "...To Eat" & made the whole song about food). So, I keep hoping that we can keep him focused on the fun things (like playing in the snow) at school.

Friday, January 12, 2007

Talking & thinking about my kid...

Well... two days & counting with no melt-downs. A subtle behavioural difference I've noticed over the past couple of days is that Brendan is more verbal than usual (which is saying a lot), so it's possible that he's talking-out his feelings rather than letting them simmer & then erupt. He's also had a slight/accelerated version of the virus that's been going through school, with stuffy nose & what sounded like a spectacular cough yesterday morning, but subsided after one dose of Robitussin... The closest he's come to meltdown since Tuesday was after a wonderful visit from friend/mentor Ck, who had jaw surgery to correct a serious underbite a week before. Ck is 19, a veteran of spinal-fusion surgery, & young enough to bounce-back quickly, but his recovery has seemed really spectacular this time. He & his mom, Paula, came over after school, partly because they knew that Brendan had been worried, & although Ck seemed quieter than usual, he perked-up quickly when he saw the trains set up in the living room. Trains were one of Ck's earliest perserverative interests & I can remember him at age 4, decked-out in full engineer's kit day after day. His grandfather gave loads of trains, all sorts of gauges, that he still has today & he & Brendan made a date for this summer to get his trains out & have a blast :) After they left Brendan was pretty depressed, particularly at the prospect of not seeing Ck again until March, which is his next school break (he's in Iowa for college). He snuggled on the sofa right next to me & processed for the next hour, sometimes sad & sometimes angry, coming just about to meltdown pitch & then backing off. I spoke gently to him, validating his feelings & talking about ways he can stay in contact with Ck & remember him while he's gone. It's just not the same, though, as being with a friend. After that hour he was ready to go upstairs & play ExoForce with dad, & had a pretty good evening after that. I can't help but feel proud of the work my kid is doing, sorting through & managing his feelings.

Yesterday I finally did something I'd been hoping/wanting to do since I gave my autism sermon last November. Our church co-sponsors a weekly radio programme with the other Unitarian Universalist Church in town called Life Now Radio & yesterday I was interviewed about being an autism mom for a show to be aired on January 20th. I was interviewed by a friend whose daughter is in Charlie's Sunday School class, so it was really very much a chat, rather than a formal interview. There were questions, which I hadn't seen ahead of time, but they were questions informed by our friendship, & to be honest, I had been thinking so much about what I wanted to say that I was able to bring a great deal of my "posautive" message to the discussion without any leading questions. It will be interesting to see how the edited version of our chat comes out- I never really gave an overview of our life or of Brendan's specific manifestation of autism. It really was a slice of "life now" perspective. On the other hand, there was a nice element of the interviewer knowing Brendan & bringing her positive view of him to the chat, which made it feel very comfortable & almost more respectful of him that just me talking about life with him, at least in retrospect. I'll post the link when the cast goes up... fingers crossed!!

Two days prior to the interview I had a very interesting experience that gave a new dimension to the message I’ve been wanting to get out to the world. I had my first up-close-&-personal exchange with a seriously biomed autism parent. It feels a bit odd to confess that I've never had such a dialogue before, but so far the only autism parents we have met (& gotten close to) are those who share our perspective of working with, rather than against, out children's autism. For quite some time I'd been wanting to touch base with a mom at school whom I greet at the door daily, whose son's receives physical therapy at school. It reminded me very much of Brendan getting PT in kindergarten & I wondered if her son was also autistic. Wanting to network, I had been trying to think of a way to engage her in conversation & Tuesday morning I had my chance, since she was hanging around to accompany her son's class on a field trip. After working my 5th-grade-son's autism into the conversation & perceiving that her interest was piqued, I went on to talk about how we've been working to give him a positive perspective on his autism. Her response brought me up sharp- she told me that she hates her son's autism & would do anything to get rid of it... Thinking quickly, I asked her what led to this feeling & she described a typically developing child who became very ill at age 2 & stopped talking. Taking him to a GI specialist at a major research hospital, he was diagnosed with a GI disorder that required surgery & involved the removal of polyps- which she was told were "full of live MMR virus"... which they attributed to her son's development of autism. When discussing this with Charlie later, he was sceptical that any doctor would have found or told a parent something like this. I don't know what I think. I did tell her about our journey, & that it had been clear to us from day 1 that Brendan was different, that he'd never experienced any regression & that his learning patterns at this moment are remarkably similar to those he had while learning to walk at 13 months. When I mentioned Brendan's Tourettes she immediately asked me if we were trying Omega3 (?) & something else... I explained that we read pretty much all of the scientifically-based papers on treatment options as they come out, but are pretty conservative when it comes to biomed interventions because we haven't seen much in the literature that makes us want to try them. As we talked, we conceded that there may be different things causing autism, resulting in our radically different experiences with our children. I was left with a lot to think about. I definitely believe that this mother wants the best for her son. I am worried, however, because I believe that children have an uncanny knack for picking up on adults’ feelings about things & projecting them on themselves, & I worry that "hating" your child's autism, no matter how much you love your child & behave as though you love them, may give subtle, negative messages that the child may internalise. This is one of the concerns that has turned my thinking around concerning Brendan's autism, & one reason we do not use "fighting words" when it comes to discussing any of his diagnoses. In either case, it was a very eye-opening encounter. It put a human face on "biomed" (for me), for one thing. For another, it has helped me to understand that my own particular, positive perspective has come not only from my experiences with Brendan, but from my own spititual journey to live consistently & positively. This is why, as whimsical (to put it mildly) as it may seem to refer to myself as "Lisa/Jedi" & to have a Star Wars theme to the blog, it it also a serious & life-affirming way for me to frame my way of thinking about life & my kid. So far, it works...

Wednesday, January 10, 2007


We still seem to be in transition mode at our house, although from what to what (transition-wise) I seem to be losing sight of... The meltdowns come, fast & furious, & not always predictable, but it's starting to feel like this is the work of the day. Just as Brendan has been learning to "de-tic" some of the (mostly static) tic triggers, it seems as though he's also working on learning how to "unmelt-down" . When I say "work", I mean it in the sense that life is work & play is work. This is his present work, & he's really immersed in it.

Monday afternoon I decided to take the bull by the horns & begin to re-imagine life after school, which up to now has been session after session of Adventure Quest games. Post Saturday's major AQ-inspired meltdown, I have decided that it's time to encourage Brendan to be more thoughtful & proactive when it comes to his frustrations with this game (which has been his major "life" for the past couple of months). So, after snack I matter-of-factly mentioned a list of things that could/needed to be done until dinner time. On the list was writing thank-you notes, which we'd made on the computer & printed out over the weekend, watching some of the videos he & dad had gotten out of the library (more Electric Company, Jeeves & Wooster, Marx Brothers), & playing with some of his holiday gifts. I did not mention AQ & Brendan got a deer-in-the-headlights look on his face. He asked about AQ & I told him that we'd need to rethink how much time he spends on it, plus how he self-regulates when he gets frustrated. With a reserved look on his face he asked what I meant. I explained that I thought he should have just one, 45-minute session (with time tacked-on at the end to finish the adventure he was on) before dinner, since there were so many other things he could do as well, & that if he found himself calling the monsters ugly names he would take that as a sign that he needed a break from the game & stop the timer while he did so. Interestingly, Brendan did not immediately dissolve into a puddle when he heard this. His response was to ask me whether I believed in compromise & family decisions or not... :) I responded that I believe in these when they work, but that our new AQ rules, established a few days ago, were not doing the job & it was time to pull the parent thing & intervene. Then he melted down, cursing AQ, the monsters, & finally moaning about his own stupidity & inadequacy... sigh. He moved from anger to remorse & finally resolved not to play AQ any more because there were no redeeming qualities in the game. I gently disagreed, & reminded him of how he's worked very hard to learn how to progress in the game, & that things aren't interesting to do unless they're a challenge, & that he's finding things easy now that used to be really hard... just like real life. I also said that he doesn't have to play AQ & that there are many, many things he/we can do. He finally emerged &, with the promise of my scribing his notes for him (& he just having to sign them), he decided to work on thank-yous. The rest of the day went really well, even the usual "witching hour". Charlie couldn't believe how easily the evening went & we agreed that he'd gotten it all out of his system early :) That evening they finished reading "Eragon" before bed & started on a new book given to Brendan by Charlie's parents, called "The Boy, Me, & the Cat" by Henry M. Plummer, which is the journal of a sailing trip made by a father & son (& a cat, of course) from Massachusetts to Florida & back again in 1912-1913. Charlie came down to say that Brendan had actually fallen asleep while he was reading, which hasn't happened in quite a while.

Tuesday began with a meltdown at breakfast, over a stick. Brendan has been carrying around a long, thin stick (looks rather like a dowsing rod, actually) that he'd partially whittled this summer when we were in Pennsylvania. He's developed some ticcy stuff around it & has to lay it down in particular ways & in particualr places when it's not in hand. At breakfast I (reasonably, I thought) asked him to put it down while eating, since he was trying to manage a bowl of rice with chopsticks while still keeping a grip on the stick & I could see disaster looming in the form of spilled milk at least... He didn't want the stick on the counter, didn't want it on the floor, started moaning whenever I mentioned someplace else & I finally lost patience & told him I'd put it in the living room, so he couldn't see & worry about where it was. He was really pissy after that (not worried, though) & refused to eat... I was getting the soy sauce out for his rice when a brainstorm occurred. I told him if he started eating I'd tell him something really gross about the soy sauce bottle. That piqued his interest, so he took a hashi-full of rice. The I told him about the time I went to pour some soy sauce & it wouldn't come out the little dispenser hole, so I opened it up to clean it out & found a dead ant in the hole... He was delightedly grossed-out & regained his good humour in record time. (There are times when a 10-year-old's sensibilities are a plus...). I delivered him to school still in good form, although I guess it was an upsy-downsy day from Cherie's report when I picked him up. Intermittent troubles with no real warning.

I was anticipating an afternoon & evening without respite, since Charlie had a dinner meeting that evening, so I did not choose to rock any boats after school. Brendan wanted to watch some Electric Company with snack, so we took our crackers & ramune up to the tv room & watched for about an hour. The he told me he thought he could handle the new AQ rules, so he went for it & did very well. It wasn't until after he was done that things went south. I was online & he curled up on the sofa next to me, making Kirara (cute demon cat) noises when suddenly he began twitching & getting upset. Something that had happened at school that day popped into his head & he couldn't get it out. He said it was like a song that won't get out of your mind. I talked about distraction- watching some tv, helping me make dinner (it was time)- but he couldn't be diverted from the thought. I managed to get him into the kitchen, & then off the floor (he was banging his head) & onto his chair at the table (twice, after he ran back into the living room) & tried very hard to get dinner made so he'd have some food in his stomach to fortify him. He was really distraught & kept telling me that the OCD was like a parasite in his head. I kept talking to him, countering with some less desperate images, but I felt kind of helpless with no Charlie in sight. I was making okonomiyaki pancakes for us, & his was done first so he did start eating a bit. As he ate he decided that the OCD wasn't like an unruly Skitty because he'd have to give it up & he likes Skitty. He asked me if I thought it was like Naraku (the super bad guy from InuYasha) & I said that I thought that was a great analogy. It is- Naraku is a user & a coward, & very powerful... but throughout the series you see characters that not only grow in their ability to counter his evil (like InuYasha), but those who fearlessly & almost comtemptuously face Naraku (like Sesshoumaru) & I think that these are really realistic & even positive images for Brendan to have when it comes to the OCD. As he talked about InuYasha & OCD, he became calmer & more peaceful, munching more pancake until he was finally full & ready for dessert. I ate a very relieved dinner myself, & we had a nice, comfortable evening together. Brendan's attempts to find analogies for the OCD & his frequent wrestling with with it over these past few days are what make me feel as though it's his present work- & Brendan's style is to work on something pretty much exclusively until he has a handle on it. It can be a wild ride, but I feel really proud of him, too (when I'm not eating chocolate to recover... :).

Charlie was really surprised to find Brendan already asleep when he got home last night at 9:15... We've been thinking about trying melatonin (as Kristina & others have written about lately) as a way to further reduce Brendan's daily seroquel dose, particularly as he's not been falling asleep much before 9:30 these days & waking up with the alarm, groggy & unhappy. Although the melatonin does seem to have possibilities for our seroquel-reduction plan, I think we've discovered why he's been falling asleep so late... The new bedtime reading book, old-fashioned & gentle, with sweetly funny bits & a lazy-journal-written style has been putting him to sleep in about 10 minutes tops :) It would appear that Eragon was simply to exciting to read before bed (duh!!). We will keep this in mind when choosing further bedtime reading, believe me...

Monday, January 08, 2007

Game show host...

This is Brendan dressed as a game show host :) He was dressed this way because Charlie decided to be proactive for this morning's Sunday school activity & plan something that Brendan could/ would want to participate in. The last time the whole Sunday School met together (due to it being a low-attendance Sunday) it was a disaster for Brendan- in great part because he wasn't in his usual classroom with his usual teachers. For yesterday's all-school session Charlie had planned a church history game show, with help from our church historian, to get the kids in the loop for the church building's centennial celebration this year. As he'd been putting the game show activity together he'd gotten Brendan & me involved (thinking up silly multiple choice questions & the like) & at one point Brendan decided he wanted to be the host "with a bow tie & jacket like Jeeves'!" In actuality, he was doing his imitation of Stephen Fry as Jeeves when this photo was taken yesterday morning :) Brendan had a really good time being the game show host & I think the kids were about as engaged in church history as you could expect them to be, so it was a successful activity. Go Charlie...!

Brendan decided, since he was dressed as Jeeves, to be our butler all during breakfast yesterday, which was a hoot (he's studied Fry's characterisation very closely & does the lift of the chin very well :). It was a bit surreal, to me, because he'd been in a completely different state the evening before. Sigh. He began melting down in the late afternoon while playing Adventure Quest & moved into seriously depressed mode very quickly. It was good to have Charlie there to tag-team sitting & coping with him (he got home from work about 2 hours into last Tuesday's meltdown). It is so very hard to sit with a child who keeps saying that he wants to be dead, that he wishes he didn't exist, that he shouldn't have been born... who looks at the happy faces on his InuYasha calendar & asks why they're so happy, why can't he be happy too... It's heartbreaking. In some ways, his moving into this state of mind is a continuation of a life-long inability to cope with life in the late afternoon- known as "the witching hour" (with apologies to witches everywhere...). Charlie also sees these meltdowns as an intersection of Brendan's tendency toward inflexibility when it comes to switching mental gears, with this low-energy time of day. It is very hard to know how to respond to a kid who's wailing gloom & doom when you can't say or do much that will help. He rejects any attempts to reason with him, doesn't even know if he wants anyone with him or not, gets stuck when encouraged to do something to distract himself. My main concern is to stay by him & make sure he doesn't act on these feelings of not wanting to exist. Eventually he finds a tiny window to escape through & if we do/say the right thing, he pops right out of it & recovers his usual outlook pretty quickly. Saturday evening we'd been planning to go to a holiday party (for the medical teaching staff at the university where Charlie's an associate professor) & had our goddaughter set to sit for Brendan. It wasn't difficult to change our plans (there was no way we were leaving him) & order a pizza for dinner instead. When pizza was first proposed it became a place to get stuck- I sometimes wonder if, in his misery, he feels he doesn't deserve anything special, so we let it drop. Finally, the window of escape appeared & I found myself (a bit startled) playing legos with Brendan (Rufus as Godzilla, defending the Sentai Fortress...) as he giggled furiously- a relief reaction I think. Charlie put The Marx Brothers' "A Night at the Opera" (they'd just got it from the library that afternoon) in the vcr & soon Brendan drifted into the tv room & we found ourselves immersed in the movie, pizza arriving at some point, & the rest of the evening mellow & pleasant.

As I mentioned, seeing Brendan perfectly composed as Jeeves was a startling contrast to his tear-stained frenzy the evening before. It's a joy to see him enjoy himself so much, to see him behaving with such dignity & poise & calmness. It was a delight to see him having so much fun in his role as game show host during Sunday School. It makes me wish I could do more for him when he's so down. It makes me want a magic pill or magic word or something so he wouldn't have to feel so miserable... It makes me feel inadequate when he's in such distress. From discussions with his psychiatrist- which have resonances with conversations with his other two psychiatrists- I know that there is no magic pill for Brendan. He's got far too much going on for there to be a simple solution- he's just not a simple person. Our hope is in his growing, both psychologically & physically. As he grows he will get perspectives that will anchor him more firmly to life. As he grows his brain chemistry will change- how, I don't know. My faith & hope is that the changes will be positive. So, all we can do is help him to endure the rough times & really enjoy the fun times.

After church Brendan played with the electric trains & then he & Charlie watched a new science programme that Charlie had taped on PBS. Tomoko came over for a lesson & not only did we learn about how the day & date are expressed in japanese (with an InuYasha conversation, of course) but we put our calendars together & made more plans for our trip to Japan in June. Tomoko's family is getting rooms at an onsen (hot springs resort) for us all to stay at for a weekend while we're there- so exciting!! They wanted to know when to book the rooms & whether we want to stay in japanese or western-style rooms (we opted for japanese-style). This planning also helps Charlie to figure out when we'll be in Tokyo & Kyoto, so he can start booking rooms there, too. After lesson Tomoko & I wrote an email to her mom thanking her for the New Years things she sent to us & sending her pictures of our celebration :) Then, we made dinner together. We made okonomiyaki- pancakes that are made "your favourite way" (which is how "okonomi" is translated). You make the batter, then add veggies (or whatever you want) for one pancake at a time, so each can be different. We had japanese cabbage, negi (green onions), nira (japanese leeks), & edamame (green soy beans) to put in them. Then there's a special sauce you put on top. I watched Tomoko make them & fried a couple myself. We left the sauce off Brendan's pancake, in case he didn't like it. At first he didn't want to join us (although he said they smelled good), but Charlie had an inspiration & rang the bell we'd been using to summon Jeeves during breakfast, & he popped back into character, which put him in a better mood. He dug into his okonomiyaki (with negi & edamame) & declared it delicious, requested to try the sauce, which he decided was like ketchup, & asked for a pool to dip his pancake in. Tomoko explained that her mom used to make these for she & her sister after school on Saturday, since they only went to school for half a day on Saturdays. They were cooked on an electric griddle right at the table & she has very fond memories of them. I really like them & the flexibility of custom-making each one- great for a household where there are strong food preferences. Charlie & Brendan both decided that they were very good- hooray! Charlie even liked the sauce (he's not usually terribly fond of soy sauce flavoured things) so I've decided that I'll stock up on the batter mix (from the asian food store) & I'll make them for dinner a couple times a month.

mcewen requested pictures of the shawl I just completed, so when the camera was out to take pictures of Jeeves, Charlie took a couple of me modeling it... It's made of fingering-weight baby alpaca yarn. It was a bit of a challenge because the yarn is so fine & slippery that I had trouble making sure I didn't drop stitiches or knit more than one at a time. It's really soft & lovely, though, & I'm really glad I persevered...

Friday, January 05, 2007

Slowly & steadily...

... things creep back to "normal" chez nous. Yesterday morning, 2nd day back to school, Brendan didn't want to get out of bed (slept right up to the alarm) & nearly every available piece of clothing gave him a tic. He finally chose a full complement (legal/comfort-wise) & dressing sort-of commenced... We were downstairs for breakfast in twice the time it usually takes, but we made it. He had leftover holiday banana-nut bread for brekkie, which he really loves, in spite of needing to pick-out each & every nut :) & it put him in a much better mood. We got out the door reasonable on time, & on the way I took the bull by the horns & told him that we needed to find a way to de-tic things. His response was "huh?", so I went on to say that the tics are a kind of magical thinking- if he doesn't do or choose the right thing he has an overwhelming feeling that something bad will happen ("Isn't that right?" "Right mom."). So I suggested that he might be able to find some countering magic that would de-tic things, because mornings like this one, where the tics were making him so miserable that no-one could function, were just too stressful. He saw my point, but wondered if it could be done. My main hope was to help him to find an image, or something, to hook a solution to the problem on. In his Adventure Quest game he's not only been exposed to a great deal of mythology & imagery surrounding magic, but has "studied" to be a mage & wizard (& a necromancer, but we're not going there...), so it had occurred to me that he might be able to use some of what he's been learning to help him with the OCD/tics. I asked him if there was anything he could think to do about his clothes that give him a tic, to de-tic them... & he said that maybe he could fart on them. I said that that would be fine if he thought it'd work, & added that maybe Rufus could do the farting if he found he didn't have any gas at the moment, which made him giggle. At this point I let the conversation turn to other things & he regaled me with stories of his AQ game for the rest of the trip to school. He settled-in at school pretty quickly & I had a nice chat with his OT before leaving for my first solo grocery shopping in 2 weeks.

Still feeling run down from the holidays & decided to spend the rest of my time post-shopping on laundry & watching InuYasha while finishing an alpaca shawl that I've been working on for quite a while. I had promised Brendan that I would try to find some episodes that he can watch, too, & have been watching 2-3 every night after he & Charlie have gone to bed since Christmas, when Tomoko's housemate gave us the gift of episodes 82-130 from his collection (wow!!). This particular story arc has been particularly violent & unsettling so he'd only been able to watch the first few, funny ones on the dvd so far... Yesterday I made it to episodes 127-130 & finally there were some silly ones, suitable for Brendan. Mission accomplished- plus I finished the shawl & got it ready for blocking. Whoo hoo!

When I got to school to get him. Brendan was waiting at the window, watching for my arrival, upset. He came right over & pushed his head into my chest (a good alternative to banging it on a locker...). He didn't want Cherie to tell me right then why he'd been so upset, but said that "it" had been wandering around. Knowing that he was talking about another student on his floor who gives him a tic, I told him gently that I thought referring to her as "it" was disrespectful & he apologised. Cherie wanted to tell my about a good thing that had happened that day, but he got upset & said he wanted to do it, which she respected :) On the way home he calmed down & was very pleased that I'd found some InuYasha episodes he could watch. I had some stuff to do after snack, so he was happy to do his first session of AQ under the new rules (mentioned in Wednesday's post). Charlie & I had decided that, even though his sessions technically last 50 minutes, we'd ask him to set the timer for 45 minutes because he rarely disengages from the game in less than 5 minutes (he's usually in the middle of something when it's time to stop). Brendan saw the fairness of our request & didn't protest at all. He actually stopped his game about 10 minutes early, when I'd finished what I was doing, because he was eager to see InuYasha. A couple of the episodes were laugh-out-loud funny & it was a lot of fun to share them with him. He went back to his game while I made dinner & his next session ended just as we were getting ready to eat.

Over dinner the 3 of us discussed what we'd do that evening. Brendan had brought his play script home for a final revision check, so that was a high priority. Charlie mentioned a couple of things they could do together, like begin to set up the trains in the living room, as well as having a bath, & Brendan said that's what he wanted to do. Almost as an afterthought, he told us that he'd done something amazing that day at school- he'd de-ticced his water bottle. (He hasn't been able to use his water bottle at school due to OCD thoughts/tic for a few weeks, but also refused to use the replacement I'd sent. Since he also has a tic about the water fountain, he'd been stuck for a way to get water for quite some time...) He said he'd been able to use magic to take the tic off of it & now he could use his bottle again. We were really excited & pleased, & I could see why Cherie was so happy, too. I felt a deep contentment that he was able to take the seed I'd planted that morning & let it grow into something useful & productive :) He had a really calm & fun evening with bath & trains. It hit me after he'd gone to bed that I had forgotten the new, additional dose of klonapin at snack time that we'd been giving him since last Friday... I told Charlie that I thought he'd done better without it today. Klonapin is one of the medicines that does not have a half-life in the body, like SSRI's, so it's easier to tell whether or not it's working by observing behaviour & adjusting as we go. Though there a lot of factors involved in his coping/state of mind, we decided to see how things go without it for the next few days.

This morning Brendan woke up about half an hour before the alarm- a very good sign. He started reading one of the "Last of the Jedi" books I'd got for him & it was hard to redirect him to getting clothes out & dressing... until I mentioned that if he dressed really quickly he could read until I was ready to go down for breakfast, & that did the trick. I had done some laundry so his favourite shirts & boxers were available, so getting dressed wasn't a problem at all & he easily grabbed some more reading time. Things went very well until just before leaving, when he went to the bathroom & lost control of things & ended up peeing on his cargo pants... the only others available were his black pants, which sometimes give him a tic, but he took them with good grace. The next hurdle was his raincoat- another item of clothing that has been giving him tics. I had been hoping that not needing to wear it for a long time would help the tic wear off it it, which sometimes happens, but he brought it up as soon as I told him it was too warm to wear his winter coat today (57 degrees F. on January 5th!!). I matter-of-factly said that he'd just have to de-tic it... & he did. He held it & made a grrrr... sound with an explosion at the end, & then he just put it on. We were were actually out of the house nearly on time...

When I finished door-greeter duty this morning & went up to kiss him goodbye I found him in mini-crisis. His water bottle was ok now, but he didn't want any water from the 3rd floor sinks. For today, I went down to the second floor & refilled it for him. I know he & Cherie will sort this one out, too. He was grateful to get his full water bottle from me & told me, very dignified, that he would go back to his class then & that I could tell him "itterasshai" & kiss him. So I did & went home. :)

Wednesday, January 03, 2007

One-year anniversary (a day late...)

Yesterday was the one-year anniversary of "Life in the New Republic" & it was due to the unpredictable nature of this life that I wasn't able to post on the actual anniversary. But, this is the virtual world, so I will declare this my virtual anniversary & boldly go into the unknown new year of blogging... (to mix my metaphors just a bit :).

Above is our New Year's "osechi", placed as artfully as I could in the "jubako"- the special box to hold the food. We used just 2 of the 3 layers of the box, since were were doing "osechi lite" :) There was no way that Brendan would have approved of obvious fish-products on the table, which occupies a fair amout of space in the usual Japanese New Year diet. The only fish-products were very un-obvious, disguised as slabs of white half-circles bordered by bright pink, aka: "kamaboko" & pretty tasty, considering that they're extruded fish paste :) All of the osechi was pretty tasty, actually. My mom (aka: "Grammie) & Tomoko joined us on New Year's Day at lunchtime for the feast. We had champagne & I did cook some rice (even though in Japan the custom is to avoid cooking for 3 days), & Tomoko made some mochi (rice gluten cakes) for us in a western-style, broiled with mozzarella cheese & soy sauce & wrapped in nori seaweed, which was quite delicious. Tomoko surprised Brendan with an "otoshidama"- a specially folded paper containing a gift of money. He was very excited to receive a $20 bill in the wrapper. In Japan it's customary to give children gifts of money at New Year's, which is saved for them by their parents until they're older. We let Brendan spend it on some Adventure Quest items which he'd wanted very much... It was a very mellow day, New Year's, & very pleasant to spend it with friend & family.

Charlie went back to work on Tuesday & Brendan & I had plans to go to see "Charlotte's Web" with a friend from school & his mom that afternoon, with time to play at our house after. I warned Brendan that it would be a tear-jerker (& then had to explain what that meant), like a Pokemon movie (which we have both been known to sit & bawl at the end of...), but that I'd heard it was a a good movie. We'd both seen the trailer & it reminded us of "Babe the Gallant Pig" which has been a favourite since Brendan was little, so he was psyched to see it. It was really good, although there weren't any real laugh-out-loud moments, which is the sort of movie that Brendan prefers. As we were leaving he told us very politely that he was tired & would prefer not to play with his friend afterward, & they seemed to understand. I had forgotten that movies tend to wear him out, & sometimes he has a delayed reaction to the intensity of movie-going... I don't know if it was the movie or the prospect of school the next day, but about an hour after getting home he descended into a major meltdown, in the midst of playing AQ, that lasted for four hours. It was exhausting. He ended-up in bed, fully clothed, alternately raging & crying, then calming for a bit, then the OCD taking charge of his emotions, & frantic ticcing, then back to raging & crying. In between he moaned about how awful school was, how he didn't feel safe anywhere, how he wanted to die... I alternated between feeling terribly sorry & sad for him & exasperation, as he'd bounce right back into fury over something we'd just sorted-out. Charlie got home around 6:30 & we took turns eating dinner & sitting with Brendan, finally getting 3 daifuku buns (mochi buns with sweet red bean paste) & his evening medicine into him as a dinner of sorts. Charlie managed to get him to play with the ExoForce legos for a bit & then he was calm enough to put his jammies on for bed. I ran upstairs to read to him, as he started getting agitated again, but managed to distract him with a chapter of Eragon. I gave him a "quick minute" afterward & he finally fell asleep. I was completely burnt out & very worried about getting him to school this morning...

Although Wednesday is Charlie's usual day to take Brendan to school we had decided that I'd do it today, to get him back into the usual routine. Charlie worked in the morning, so I was on my own (although he left a sweet note at my place wishing me luck...). Brendan slept right to the alarm- something he hasn't done since before break- & was reluctant to get out of bed, but finally got some clothes out (all of his shirts gave him tics, but I persuaded him to choose something). I left him to get dressed & called to him periodically to see if he was actually dressing. He found his new Calvin & Hobbes book & managed to get dressed while reading it, so I suggested he bring it down to breakfast. It got him through a bowl of rice & glass of milk, & then Brendan actually brushed his teeth without being asked. We took off for school a bit early, since I didn't want to lose momentum & also wanted time to clue his teachers in as to his state of mind. He made a joke or two on the stairs up to his classroom, which was heartening, & we went into Cherie's office as soon as he got his things into his locker. Brendan told her about some school-related things that had been giving him tics & we brainstormed some ways to help him feel comfortable about getting back to school. I offered to stay for a while this morning, which he gratefully took me up on, & then we left him reading in Cherie's room. We found his teacher, Jen, & mentioned some things he'd been worried about with the class play (that we'd been helping him rehearse over vacation) & she went right in to discuss it with him. Cherie watched the class & Jen went over the entire script with him & they changed all of the lines that were making him uncomfortable (or just plain didn't make sense) & when he came out he was smiling & walked happily into his classroom. After about 10 minutes I checked with him & he was happy to let me leave, anticipating a play rehearsal that morning. Whew!!! Compared to the previous evening's angst, I could not believe how easily he slid back into school. It comfirmed a few things for me- that school really is a good place for him to be, that the fears he feels (from the OCD, etc) really can put a wall around his heart & make it hard for him to imagine anything good or happy, that he needs to have many more positive experiences overcoming these fears before he's going to be able to cope with them himself.

After a trip to the bookstore this morning to pick up the final volume of Ruroni Kenshin (a treat for me) & some "Last of the Jedi" books for Brendan (one of the things we'd talked about during his distress yesterday was the need for some new books for him to read, so he can distract himself better when he's overwhelmed), I came home & basically vegged all morning. I had agreed to pick Brendan up from school early since there was a whole-school activity planned for the later afternoon & he does not do well in crowds at school. I found the energy to eat lunch & was trying to fit as much housework as possible into 10 minutes (before leaving to get Brendan) when Charlie called to say he was on his way home from work... So I had him get Brendan & I did all the outstanding housework. Another whew. Brendan was in a good mood when he got home & was eager to get on to Adventure Quest, so we briefly discussed some plans for the afternoon with him (such as taking down the christmas tree & making a get-well card for his good buddy Ck, who had surgery today) & then let him play. After about an hour we had him interrupt his game to help with the tree. The motivation for helping was that most years we put up the model trains in the space that the tree had occupied, for a month or 2, then put them away again until after the holidays next year. Brendan has been very keen for the trains & asking to get them out. He was, however, not very happy about leaving his game & lay on the sofa making borderline snarky remarks (& then apologising for them) while Charlie & I put ornaments away & packed the holiday decoration boxes to be stored for another year. He perked up a bit when we went to make the get well card, but began to have a tic about everything he wanted to write in the card (we were making it on the computer) & then got snarly & started to melt down like yesterday. I had pretty much had enough & told him that he wasn't going back on the computer to play AQ & that he should find something to do in his room instead. He went raging upstairs... we pretty much let him rage it out for half an hour, then Charlie went up to give him a 20-minute warning about dinner. I heard some pleasant conversation, then Charlie came down to say that Brendan was in a much better frame of mind & working on the key that's been stuck in the lock in the door to his room for nearly 2 years... (I had used a skeleton-type key to lock the tv room door for his spy birthday 2 years ago, & he had decided to use it to lock his door, but instead got the key stuck in the lock). Not long after he came running downstairs yelling that he'd gotten the key out of the lock & it was all because I'd yelled at him & sent him to his room. He was elated, & apologised to me for making me yell at him, but was really happy about getting the key out. During dinner we discussed some rules for alloting his AQ computer time, & came up with a compromise that we could all live with. He now has 3, 50-minute opportunities to play AQ every day, but must take a 30 minute break between each. He may earn an additional 30 minutes for after dinner if he engages in a physical activity (like going swimming with dad, kite-flying, or agreeing to resume fencing lessons) or takes a bath (we're trying to get him back to either daily or every-other-day baths). After dinner we finished dismantling the lock mechanism in his door & put the door knob back on, & I hid the skeleton key to avoid future mishaps :) He had a bath & is happily playing AQ as I write.

It sure has been a bumpy few days, but the transition from vacation to school, holiday to regular days, is huge. Helping Brendan learn how to find the inner & outer resources to manage the OCD & the highs & lows of being a 10-year-old seems to be our main task these days, & the trip has been rough. I have the feeling that my heart has been repeatedly wrenched out & put back in place, but I guess that's part of the long-haul of being a parent. Keeping him alive & reasonable sane is the goal, & I am so very glad that I'm not doing this alone. Bless Charlie, bless school, bless our friends & family... Happy New Year, indeed.