To fight, or not to fight...

Way back in early December Brendan's psychologist asked me to keep a "tic log", essentially a record of Brendan's anxiety moments. The purpose for this was data-collecting, to see if we could get a sense of the patterns of Brendan's OCD anxiety. I have been doing this faithfully, along with recording our responses to his anxiety on the odd chance that we learn anything from that, too, & getting Brendan's input on his time spent at school (everything has been done with his knowledge & co-operation, of course) ever since, filling 2 little hand-bound books with these observances... until just this past week. I'm not sure why I've stopped, but somehow it began to feel more & more like micro-managing, like looking at things too closely. So, without too much struggle (or guilt), I stopped. My researcher past tells me that we probably have plenty of data by now (3 months' worth) & my mom instinct tells me to follow my gut :) Brendan's psychologist is a wonderful, understanding person, so I know he'll understand, whatever the reason.

One of the good things about doing this sort of thing is that it's not hard to spot changes over time (since I'm writing everything down, I can't help but notice what phrases I write over & over again...). A few trends that have been pretty obvious are his anxiety before going to school (particularly Monday mornings) & also the extreme pain that the OCD anxiety has been causing him. One of the things that has changed noticeably in the past 3 months has been Brendan's ability to ask for help when faced with anxiety- he's gotten much more proactive about this & we are actively grateful, making sure that we give him feedback when he's done well with communicating. His school teachers have been noticing this, too. It is a wonderful, wonderful thing to see him starting to use the strategies he's been learning to cope with the anxiety. It's also wonderful to be able to give him the feedback that he is using the strategies. He's not always aware of what he does & one of the main things we've been trying to help him learn ever since the anxiety became a "big player" (almost exactly 4 years ago, just before his 8th birthday) is how to choose the most effective & positive ways to deal with it.

These days Brendan seems most vulnerable to the "fleas" (his word to describe/personify the OCD anxiety) on Monday mornings, & we have had some doozies the past couple of weeks... The first time Monday Morning-itis hit I was not prepared & it was a disaster. He was so immobilised by the "fleas" that he couldn't get dressed. I waffled between explaining that he would be going to school in his jammies if he couldn't get dressed, trying my best to enable the dressing somehow, and then trying my best to deal with the full-body tics that erupted whenever he tried to touch his clothes... There was something bad about the colour green that morning (related to something he'd seen on a show) & he couldn't even look at it. Although his clothes did not have green on them, he was surrounded by green things. Colour difficulties are a pretty common manifestation of the OCD anxiety, but they'd never been quite so intense. Finally, he was able to struggle into his boxers & pants on his own (his is nearly 12 & no way am I going to embarrass him & try to do the nether regions) & I dressed him the rest of the way. He was too upset to eat breakfast & sat in the kitchen & sobbed & hated the "fleas" & raged at the OCD & said he wished he'd never been born until it occurred to me to offer him a book, which distracted him enough to eat a banana & take his morning meds (bless you, Terry Pratchett!). By the time we got to school he was doing pretty well seemed not to have any more trouble than usual. I was a wreck for the rest of the day, though. I felt like a particular failure as a mother & it felt bad. Sigh. That wore off in time, though, & in talking to Charlie, he certainly was able to find bits where I hadn't totally blown it... I think the worst was feeling so helpless & ineffectual in the face of his pain.

Over the following week I thought about what had happened, mostly in the back of my mind as we did our daily thing. One of the things that has really been coming into focus over the past few months is Brendan's pain & resentment of the OCD. I've gone through a few revolutions of thinking since Brendan was diagnosed as being on the autism spectrum & one of the main ones has concerned whether or not to "fight" his conditions. I have written before about the use of "fighting words" when it concerns my kid or his differences, & my ultimate conclusion is that is does not add positively to the world when we fight it... but how could I talk about this with Brendan while still acknowledging his pain & his own feelings on the matter?

This week has provided a couple of occasions to work on this... :) This past Monday was definitely a continuation of the previous Monday, with the added excitement of Brendan still being "jet-lagged" from the time change. I was prepared, though, so I stuck with him verbally, from the other side of his bedroom door, as he got his pants on & then took over the rest of the dressing. Green was no longer an issue (the bigger the blow-up the shorter the duration of the "flea", I've discovered) but there is a particular shade of blue that causes problems... we got past that & he was crying on the way downstairs & plopped on the kitchen floor when we got there, so I just handed him his book & he requested an apple to eat & things were pretty ok. While I was eating my breakfast & he took a break from his book, I made an attempt to talk about the anxiety. I told Brendan that it seemed to me that his anxiety about going to school is actually pretty reasonable for a kid with Aspergers, with all of the social difficulties that go along with it. And it seemed to me that the OCD was taking reasonable anxieties & blowing them out of proportion, which is one reason it's so tough to deal with. We started calling OCD "anxiety on steroids" which made him kind of grin. It was a start...

This morning, even though he was off school for teacher conferences, I suspected that he might have some trouble getting dressed because we were due at school at 9:00 for his conference (yesterday he was off, but no conference). I was right- he dithered & "flea-ed" & then asked me to finish putting his shirt & socks on, which I did, & then observed that it was really helpful for him to ask for help. He went downstairs yelling & moaning, so we talked again about the "anxiety on steroids" & he said that he hated anxiety & started crying. So I told him that one thing I've observed is that he has a lot of trouble on schooldays, which did not mean that he doesn't like school or trying to get out of anything (this is a recurring argument- that he feels he's being accused of using the OCD to try to get out of things). I reminded him that this school anxiety is not unreasonable for him, but that the OCD ramps it to unbearable levels. Then I gently suggested that he wasn't alone in dealing with something painful like this, that there are other people around that I've known who were born with difficulties that sometimes cause them pain- like my friends from my wheelchair basketball days who were paralysed or had lost legs in war or accidents, & how they had to get used to being different & being perceived as being different, & used to getting around in a different way, which could be really difficult. I told him that I'd observed that those who found positive ways to look at their pain, who didn't fight it but accepted it as part of them, were happier people. We talked about people we've known who are refugees from war, & how anger & wanting revenge does not make someone peaceful. We even talked about the difference between being a "fighter" in the sense of learning to fence & how that's different from fighting something. Brendan reflected that fencing requires a lot of thought, but when he's angry & fighting the OCD, he's not really thinking, just reacting. Our discussion bounced around a bit, but as we talked Brendan became calmer, more peaceful himself. I mentioned all the ways that I've already seen him using good strategies to cope with the OCD, & how he's gotten so much better at dealing with some parts of it. That it's ok to be angry & sad about how hard it is to deal with life with OCD, but it's what he does with his anger & sadness that's important. He was perfectly calm & able to sit & eat (no book :) after that. We both felt calm & peaceful. We talked about it all again during his conference, as he reflected on how well he's managing the anxiety at school, pinpointed the difficult times of day & how he & his teachers could cope with them. It was all very positive & I felt such a glow of pride for my son.

Ultimately, I think what I really need is a big sign somewhere that says "the intense times are the times when we learn the most". It's so hard to cope with those intense times, when we're all falling apart & no-one knows what to do... but I look at what Brendan & I have learned from our frightful Mondays & I can feel (almost) grateful. We are turning our minds to every important considerations. How we think is how we live, & Brendan is growing into a very thoughtful person indeed... :)

Moving back into the groove...

Hi All...

Sorry for such a long hiatus! We really are doing well, & I'll elabourate further in a moment... Things just became busier than they've been in a long, long time, hence the blogging break. Right before we left for Japan (last June) I agreed to be on the search team at my church that is going through the process of finding a new minister, ours having left in May to become an army chaplain. The way we Unitarian Universalists do things is to find & call ministers ourselves, the process being facilitated by the denomination with guidelines & an online matching service. I've been a member of my church for nearly 30 years & have observed this process 3 times before, but never been in a life stage where I could participate actively, so I'm really psyched to finally be part of it. It's intense, though. Like having a part-time job... I'm actually anticipating an imminent OS upgrade (like, this evening, I hope...) so that I can use iworks (which I plan to purchase tomorrow) to create & publish the packet we'll be sending to prospective ministers- that's my main responsibility right now (nothing big- ha, ha, ha)... outside of my other church & school activities &, of course, being Jedi mom to Brendan :)

Ahhhh, Brendan! He grew 1 1/2 inches over the summer!!! He's also grown internally in so many ways that are not visible, but are truly wonderful. The school year's gotten off to a great start. He's now one of the 6th graders in his mixed 5th & 6th grade class, & is taking his responsibilty for being one of the "big kids" very seriously. The anxiety management that he learned while in Japan & over the summer have led to a much calmer Brendan, & when the "fleas" do "attack" he can explain them clearly & often requires no intervention in handling them- not even a kekkai (ki) barrier. It's amazing to see him doing it on his own... We've been able to talk through many of his long-time tic-triggers & he's finding creative ways of managing them, such a using imagery, burning incense (we light it for him) to "smudge" the thoughts away, or just burying himself in a book for a while. He's been reading voraciously we've been enjoying discussing the books with him so much! He's worked his way through all of the Charlie Bone books published to date (6 so far) & is on the second of Rick Riordan's series about demi-god kids (it starts with "The Lightning Thief"). I've been pre-reading them so I can really discuss them with him, & enjoying them all very much myself. I also decided to allow him to start reading the manga "Naruto", which was a bit borderline in terms of violence (but no worse than anything you'd see in the LoTR movies- which Brendan has not seen- or even in InuYasha) but is a manga I've been enjoying for a while. I'm so glad I decided to allow him to read Naruto! The basic story is about kids who are training to be ninjas, the protectors of their village & country, & the main character, Naruto, has a very powerful demon sealed within him- a good metaphor for adolescence if there ever was one :) One of the things I like about the story is that the values- looking out for others, finding family in unlikely places, doing your best no matter what- are consistent with my own, & through the manga Brendan is getting these values from yet another source. Also, we've had some interesting discussions about lots of things brought up in the manga, about stereotypes & how they play around with them in Naruto (one of the most powerful ninjas around looks rather like a bimbo...), about how people in the manga feel about fighting (there's quite a lot of ambivalence), about how you can tell how they're feeling by looking at their faces... which is one reason we've been concentrating on reading the manga rather than watching the anime, since the illustrations are static & more easily interpreted by my aspie boy :) One of our more interesting conversations occurred because he was consistantly referring to male characters with long hair as "she"... turns out that he didn't know where to look in order to figure out the gender of the characters, so we talked about the general physical differences between men & women, & how they usually show up in illustrations. A great "teaching moment" :) It probably goes without saying that Brendan will be a ninja for Halloween- he chose the fabric & approved the pattern, so I just have to make it (this week, I fervently hope...).

The bottom line these days is that I have a wholly different kid on my hands! He's clearly moving into adolescence, & doing a fairly graceful job of it (at the moment, at least :). He & Charlie have been spending more & more time together, too, doing dad & son stuff... Brendan re-discovered his interest in sailing about mid-August & took over crewing for Charlie for Sunday racing, even helping him go on to win the summer series. He was dad's only crew for the fall series & they won that one, too :) For the first few weeks of sailing I was having to go down to the club about the time they'd be coming into shore to help "catch" the boat & hold it while Charlie took down the sails & stuff. Brendan just wasn't strong enough to do it... but after about 3 weeks Charlie decided that Brendan could do it- & he did! His hand & arm strength has increased quite a bit & even though he's gotten banged-up a few times (which is just what happens when you race a sailboat, I can testify!) he's hung-in there with it & really enjoys not only the sailing but chatting with the other sailors before & after races. Pretty neat...

I hope to start posting more often, now that we've settled into a routine & I'm getting used to the stress of having the church work on top of the mom work (& figuring out where the Jedi work fits into it all... :). I have started meditating again regularly, which has been a huge help... Mostly it's Brendan's moving to "the next level" that's making life so much fun these days, in spite of the stress. We are getting such a kick out of his insights & his excitement with his accomplishments. Life is very full- I look forward to continuing to share it!

Rediscovering our rhythms...

Well, we seem to be more than halfway through our jet-lag adjustment, although it still hits at unexpected moments (with sudden exhaustion or ravenous appetite attacks). Brendan, I think, has done the best job of readjusting, with Charlie coming in a close second- but then, he had 2 days to get his act together before going back to work last week, so it was kind of necessary, poor guy. Unfortunately, about the time we all felt like getting out & getting some exercise this past weekend, it started to rain, then the heat kicked-in. I thought that southern Japan would have gotten us acclimated to summer heat, but that wore off pretty quickly. The past 2 days it's been close to 90 degrees (or over) outside, so we've only been venturing out for necessary trips in the car :( A good thing was that Charlie convinced Brendan to go swimming Sunday afternoon, so at least they've gotten some exercise. (Brendan has become somewhat agoraphobic since coming home from Japan, so this was a big deal.) My brand-new bathing suit is on the slow boat from Mizumaki to our town (jettisoned as unnecessary baggage after our trip to the onsen), but I've promised the guys I'll go swimming with them when it arrives. The other fun thing that happened Sunday afternoon was that our college-age friend Ck came over to dinner so that we could plan "Camp Ck" together...

Most summers we have "Camp Mom" interspersed with 2-3 weeks of summer camps for Brendan- computer camp or the programme at the science museum. For various reasons, all of them seeming quite reasonable to us, Brendan didn't want to do any of the summer camps, but this left us with the dilemma of finding mom-time throughout the summer. After we brainstormed ideas, we decided to ask Ck, who has been a favourite sitter of Brendan's since Ck's freshman year of high school (& whom Brendan missed very much this past year, Ck's first at college) to do "Camp Ck" 2 days a week. He had been looking for summer work & decided that this would be a good start :) so this week saw the beginning of both "Camp Mom" & Camp Ck". When we discussed the summer plans with Brendan before leaving for Japan, he became decidedly "moofy" at the thought of yet another summer with a daily schedule of activities. He, of course, would be perfectly happy to play Adventure Quest & Dragon Fable all day, interspersed with movies & lego-ing. We started the daily summer schedule thing 4 or 5 summers ago, at the recommendation of Brendan's psychologist, to help him learn to self-regulate & to give us both a sense of accomplishment over the summer. It's ended-up being summer homeschooling, really, & I have felt very good about doing it. He's always retured to school in the fall with little loss of skills & the transition to a school schedule has never been a problem since we've kept to one over the summer. In fact, Brendan basically learned to read over the summer he was 8, since that's when his visual abilities really kicked-in, & thankfully we were ready to jump in & facilitate. We've done so many fun projects over these past summers, too, which has made the time really memorable. Two summers ago I taught Brendan to weave on the small loom & he wove scarves for his dad & grandparents as Christmas presents. Last summer I taught him to use the big loom & we wove a blanket!

Needless to say, I'm convinced that continuing with this summer scheduling is a good thing, but Brendan... took some convincing. It wasn't hard to get him to agree to reading every day (especially when he realised that he was behind on his manga reading :). And, when we came to actually plugging things into our weekly schedule on Sunday evening, I acknowledged that he's older now & can handle more free time. So we put in more free time, such as half an hour before lunch & from 4:00 to dinnertime, & that seemed to satisfy him very much (I think that the acknowledgement did more than the actual extra time :). While Ck was over to dinner on Sunday we brainstormed a list of things they could do together (including field trips, since Ck drives). In the evening I typed everything to post on the fridge & Brendan & I set our schedule for Monday, Wednesday, & Friday of our first week. It probably helped that we had appointments first thing Monday morning & at the end of the day as well (been away 3 weeks, you know!). Brendan participated in the scheduling with little sign of "moofiness" about it all.

So yesterday, after a bit of misunderstanding about what each of us thought the words "come down now & eat breakfast" meant (I could hear obvious sounds of playing upstairs...), we were both on track for my first-thing (& much-needed) appointment with the chiropracter. Brendan does really well when we visit her office & we brought one of our japanese magazines (featuring the Kamen Rider & Geki characters) to read to each other in the waiting room. It was fun to tell her about our trip, too :) Then, since we were out, I planned to do something we've never done before... take Brendan shopping for shoes. (Did I ever mention that we left Brendan's sneakers in Tokyo after our first week in Japan? We didn't even notice until we were packing for Kyoto, & he was outgrowing the sneaks, anyway, but it's left him without anything but sandals to wear...) It didn't hit me until afterwards that Brendan had never been shoe-shopping before. Until recently I could just buy them through Land's End & it was a pretty good chance that they'd fit. But he's now at the very end of the youth shoe sizing & has a wide foot as well, so I didn't think we were going to get away with the long-distance thing any more. The main hazards I envisioned for shoe-shopping were the strong smell shoe stores often have, crowds, & his being triggered by various people in the store. So, we got there just after they opened to avoid crowds, which worked. He didn't seem to notice a smell, which was a bonus. However, I forgot the "desecration" factor, sigh. Anything made of dead animals is "desecration" to Brendan & he was instantly repelled by the first "genuine leather" verbiage he saw on a shoe box. I assured him that many of the shoes would have no leather & we looked specifically for that sort of shoe. It took a while, & some false starts (he has depended on the loop on the back of Land's End's kids' shoes for years to pull his shoes on, & most of these shoes had no loop) we ended up in the men's shoe section (he's official now) & found what he was looking for. Skate shoes with some blue on them (very important :) in size 6.5. Hooray! Our reward for getting through this was a trip to the manga & anime store to get the most recent "Hikaru no Go" manga & dvds. We drove home for lunch in a very good mood. Success on our very first trip to the shoe store!!

After lunch we had our quiet reading time (Brendan started catching up on past issues of Hikaru...) & together reading time (we're still working our way through "Eldest"). Then we tackled his room, partly because the house was being cleaned today & you couldn't find the floor, & partly because he couldn't set up his new nezumi incense burner on his dresser until we could find the top of his dresser. No joke... Charlie had donated the biiiig box he'd brought home from work last week, with all of his vacation mail in it, for us to put cast-offs in. We really needed it, too. In the end (after clearing & wet-sponging), the InuYasha & Gundam action figures, his incense burner & crystals, & the necessaries like light, fan, & alarm clock, are all that remain on his dresser. It's amazing :) Next to tackle (another day...) is his desk. After a quick trip to the orthodontist (changed wires, asked about Japan :) we were home & finished cleaning his floor for vacuuming pretty quickly. Then we finally watched our Pythagoras Switch dvd, purchased in Japan (I have Brendan's computer set to region 5, so we can watch anything from Japan on it). It is absolutely awesome- 20-some minutes of Rube Goldbergs, many of which we'd never seen before on YouTube. There's an accompanying book &, at this moment, Brendan & Ck (having watched the dvd this morning) are working on their own Rube Goldberg contraption in Brendan's room :)

This morning Ck arrived a little early (very kindly) so I could make a regular appointment with my therapist. They've been having fun with the solar energy kit I bought, playing Incredible Machines on the computer, & now, after lunch, they're making their own. I showed Ck the fridge calendar & list & they worked on it over lunch. Brendan is obviously having a great time with Ck & I am actually updating the blog. A recipe for success, so far...!

Tokyo Day 2...

Our first full day in Japan! This is the view from our window. The window has a rice-paper screen instead of curtains- very neat :)

We hit the ground running, up much earlier than we should have been, but that's jet-lag for you. Brendan got to bed about 8:00 pm last night & didn't wake up until 6-ish. Charlie followed him by about an hour, got up when Tomoko called us at 10:00, & then was up when Brendan was. I didn't get to bed until after 10:30, but woke up at 3:15 am & could't get back to sleep, so I dozed on & off until 7:00-ish. We were all pretty fresh & ready to go, though. When we spoke to Tomoko last night we found out that the Ghibli Museum plans had fallen through, since by the time I'd called her from home & confirmed the time we could go, the tickets had all been sold by that time. Plan B was just as good, though. We enlisted her help (& the Tokyo-ite friend she's staying with) to figure out how to get to the Pokemon Centre & arranged to meet Tomoko at the Ginza metro station at 10:30 this morning. Charlie had been worried that we wouldn't get up in time, but that turned out not to be an :) We even had time to watch the latest Gekiranger episode (on the internet, with subtitles, as we usually do). The estimated travel time was about half an hour, so we left about 20 minutes early to find the station we needed to leave from. (All this after a breakfast of Japanese 7-11 baked goods & green tea :) The online weather forecast had predicted rain, but the sun came out anyway & it it was a beautiful morning.

Brendan's first real difficulty with intrusive OCD thoughts (aka "tics", since they make him do so) came on the walk to the station. He was very close to melting-down & even trying to think beyond them & concentrate on where we were going (Pokemon Mecca) wasn't helping. We kept stopping & trying to set a "kekkai" (barrier) but it wouldn't last long. Over the past few days the worst tics have not been triggered by anything he sees (the usual way it happens) but by something going on internally, so it's hard to shield him from them, which makes it hard to distract him from the triggers. After stopping 4 or 5 times beacuse he was so upset he couldn't keep going, & looking madly for something to distract him, I noticed that the building we were standing beside had a map, with some places labelled in english, & wouldn't you know- one of the places was "Pallet Town". Hard core pokemon fans will know that Ash Ketchum (known here as Satoshi) is from Pallet Town. I pointed-out the label to Brendan & he was just as intrigued as I was that it was a real place. Next thing we knew, he was distracted from the tic & able to get to the station.

Once at the station we decided to by passes, rather than figure out the fares each time & that saved a lot of hassle (once we figured out how to properly feed the money into the machine). The first really great thing we noticed was that everything was labelled in english, too, so it was really easy to find the right place to catch the train (heading in the right direction). Having taken subways in New York, Boston, & Washington DC, we found that navigating the Tokyo Metro was actually easier (scary, huh?). Charlie took a good gander at where we came in (vary handy for the return trip) & the ride was just 3 stops, change to another line (easily found), 2 more stops, find the right exit (where we agreed to meet Tomoko) & there we were! So was Tomoko & it was a wonderful reunion. (OK, so it's just been a couple weeks since we've seen her, but we've been missing her a lot!). We walked through the historic Takashimaya department store on our way to the street, & I decided to stop at the restroom there- where I had my first run-in with one of Japan's famous toilets that talk & spritz &... but darned if I could find where the flush button was! I finally decided that I was going to have to do an "ugly American" & just leave it because everyone was waiting for me. When I consulted Tomoko she said that the lack of button for flush (& I pushed most of them, believe me) probably indicated that it was an automatic flush toilet... let's hope.

After a few false starts & Tomoko stopping in a store for directions, we found the Pokemon Centre! It was mobbed... And if you consider that every child over the age of 5 was in school, you can probably imagine the scene of many, very young children plus their moms swarming the place. Brendan held it together very well :) He was quite focused, since we'd been talking about going there for months. He found the "nuigurumi" (plushies) that he wanted (but no Pichu for me :( ) & we found the "Deoxys" movie but not the most recent one (we'll keep looking). Brendan demolished his umbrella for Japan (from Santa) within a few weeks of getting it (it's a teeny one that telescopes out & he had a great time whipping it out like a lightsabre until it just disintegrated...) so we found him one with Pikachu & Pochama (his new fave) on it. We had a couple of gifts to get & I added some keychains & "chirigami" (kleenex packets :) to the mix. In spite of the mob, the checkout line went very quickly, so none of us got grumpy from waiting :)

Tomoko took this picture of us before bidding farewell to go to her conference (that's why she's still in Tokyo- she won't be leaving for home until just a couple of days before we go there, too). She reccomended that we check out a large bookstore, Maruzen, on the way back to the metro station, since she thought they would have Kamen Rider Den-O stuff there. Then we bade her "mata raisshu" (see you next week!) & headed over there. Once at the store, we realised that we couldn't read any of the signs... after some discussion as to the proper way to do it, Brendan approached a clerk & asked, in japanese, where the kids' books were. They understood him perfectly! We easily found the right floor & section & were soon surrounded by Kamen Rider & Gekiranger books & magazines.The magazine had all sorts of goodies stuffed into it, cardboard masks & equipment that you can assemble, & the books were full of detailed diagrams of the different characters & their equipment. Brendan was in heaven.

The trip back home was uneventful :) We were going to stop & eat somewhere, but Brendan (& we) were getting too tired to cope with new stuff, so back to 7-11 for lunch food. I gave Brendan my hiragana & katakana charts & he puzzled through some of the books while lunch was being made. This kid'll be reading the katakana (he's pretty fluent in hiragana already) by the time we leave, I bet! After lunch Charlie made a foray on his own to get some traveller's cheques cashed & explore, & Brendan & I watched the "Deoxys" movie. (The apartment has a dvd player- yay!) When we were at the Pokemon Centre the checkout lady warned usthat this was a region 5 dvd, but we were able to explain that we knew this & it was ok. We have one of Brendan's computers set to region 5, but we'll probably get a region-free dvd player when we get back home. As the movie was loading Brendan said "I'll bet Brock's (known in Japan as Takeshi) voice will be lower in this version." We agreed that we'd probably like all of the voices better than the english dubs, & we did (we've really come to prefer the japanese esthetic for choosing voices for animated characters). We also noticed some scenes that didn't make it into the english version, plus the music was better in places, & the pokemons' voices were better, too. Pikachu is one of the few original voices that makes it into the english dubs, because his name is the same in both languages, but most pokemon have different names in japanese (we picked up an illustrated japanese pokedex at the bookstore, too) so they have to change their voices in the english dubs. We thoroughly enjoyed the movie :) And afterward we were feeling energetic enough to go to the grocery store & a little park, which Charlie had found on his ramble, & buy "real" food.

This is Brendan & me looking over the books we bought :) By the time we got home from walking to & from the store (& puzzling out labels & discovering that they don't sell paper goods at grocery stores, so another stop was needed) we were all feeling very tired. Brendan ensconced himself on the Dragon Fable site & Charlie & I lay down "for a few minutes". I was out for nearly 2 hours! Charlie was just about to get me up when I woke up & realised that I needed to cook some dinner. We'd found rice & edamame at the store, so I made some for Brendan & me (Charlie found a frozen tortellini thingy). It was a bit dodgy, since I'm spoiled at home by having a rice cooker & have never actually cooked japanese rice on the stove, but it worked! By dinnertime Brendan was really exhausted & nearly unable to keep himself together, even in the presence of comfort food. While we were eating, though, he told us that he felt like "something that had just come out the backside of a cow" & started to giggle madly. We discussed how to say that in japanese & his good humour was restored enough for him to eat & get his jammies on. While we'd been cooking we put on the japanese version of PBS, (NHK) in hopes of catching Pythagoras Switch. We didn't, but the show that was on was hysterical (real dogs jumping rope with clowns) so we watched until the kids' programming was over. Charlie got Brendan into jammies & proposed reading to him for a bit. He came out of Brendan's room about 2 minutes later- Brendan had literally fallen asleep as soon as his head hit the pillow!

We spent some time catching up with email & contacting another friend in Tokyo, our next-door neighbour's daughter Marian, & then decided that we'd stay closer to home tomorow. There's a buddhist temple nearby that looks interesting & more of the neighbourhood to see & reataurants to find. We're hoping to go to Odaiba, maybe with Marian, on Sunday morning & see the Miraikon science museum & a few other places.

What a great first day in Japan! We all worked together & managed to do some of the things we'd been hoping to do for weeks: see Tomoko & visit the Pokemon Centre!

Atypical autistic development?

I was reading a couple of posts today that got me thinking...

Friend mcewen, in this post talks (in typical self-depricatory fashion) about the system that's worked best to jumpstart her 2 boys socially & verbally. Not only does it seem heroic to me (with just one autistic kid) that she was working with both at the same time (go girl!) but it made me reflect on our journey with Brendan & how he seems to be doing this autism thing, well, backward. This post by Kristina also led me to think back on what we were told Brendan would or wouldn't accomplish, vs what he has accomplished, & that reflection also made me realise that Brendan's path is not what might be called "typical", even by atypical standards...

There is no question in our minds, knowing what we do now, that Brendan has been autistic from birth. He was a high-needs baby who literally could not be put down (unless already sleeping) until he was 5 months old. He needed to be rocked to sleep every night & did not sleep through the night until he was 2 1/2. Charlie & I adapted to him. We never tried to "Ferberise" him, finding that the night-parenting methods of Dr. Sears fit better with our philosophy, although it was a challenge. Brendan was never a "terrible two" in that he rarely tantrummed, but his needs for constant diversion & his uneven development (although he hit all the developmental milestones on time) made him a very intense child. He had a small but eloquent vocabulary of baby signs that we taught him at around 10 months, which he lost completely at 14 months when he began learning to walk. After he'd mastered walking, at about 17 months, he began speaking & quickly moved from single words to sentences. He was very imaginative but rarely played with toys, so depended on us as his playmates. When he was around 3 1/2 he began having difficulty with transitions, particularly with leaving places he wanted to be (like toy stores & playgrounds). He would scream for long periods of time & sometimes run in circles until he fell exhausted on the floor when he was upset. We started to use the time-out system (from the "1-2-3 Magic" book) to help him learn to self-regulate, but sometimes had to adapt things to his quirks. I remember having to time him out on the landing of our stairs because if we put him in his room he'd trash it (at 4 years of age) & if we put him in a chair he wouldn't stay there. Because Brendan was so verbal we knew he understood what was going on & he could give us a fair amount of information about how he was feeling, too. Up until he was about 5 we thought that we just had a "spirited child" on our hands & were not aware of any of his developmental delays or visual/perceptual difficulties (although in retrospect it all makes sense). He didn't like colouring or drawing very much, choosing to use just one colour & scribbling when asked to draw. Although he wasn't getting any formal therapy before the age of 5 (since we didn't realise he needed any) we were with him constantly when he was not in school. He rarely watched tv alone because one of us would watch with him, whether PBS or a video, & we would discuss what we watched afterward. Although our time with Brendan wasn't structured, like a therapy would be, we structured his life securely around him because that was how he functioned best.

When we began to discover that he had severe developmental delays, the summer Brendan was 5, no-one ever told us that there were things he "would never" accomplish. The only "never" was that we were told that no child from our school district had ever received on-site therapy services at the private school he attended for kindergarten. The initial plan was to bus him, 3 times a week, in the middle of the school day, to another school where he'd receive OT & PT. Being very inexperienced with "the system" we weren't happy about this, but didn't know what to do. When we asked a friend who is an education lawyer if this was acceptable legally, he told us that the laws in NYS are pretty ambiguous about how & where therapy must be given. It took a compassionate person in our school district's special ed. services department to realise that busing him to another school "wasn't in his best interest" & she decided to make it possible for him to get on-site services. The school was delighted, since it meant that they had a precedent & could argue for other kids from our district getting on-site services as well. It wasn't until that fall of his kindergarten year, after OT & PT had begun, & Brendan began to perseveratively whack himself in the stomach, that we could really see that Brendan was behaving differently from most kids. Up until that time whatever he did seemed to us to be within the realm of "normal". We also noticed, after taking him to his second movie in a theatre at age 5, that he couldn't cope with the intensity & noise, so we just stopped taking him to theatres. No big. :)

Even when Brendan was diagnosed with Aspergers, the following summer when he was 6, the idea of his possibly never accomplishing something was never brought up. I guess we were lucky :) The focus was on getting him the proper therapies & school interventions so that he'd do the best he could. The pediatric neurologist did tell us that he would probably develop Tourettes (& he did, 3 years later) & was concerned enough about depression to want to put him on anti-depressants at the time, but we were not keen to do that, since he seemed to be functioning just fine to us. It wasn't until Brendan developed Obsessive-Compulsive Disorder 2 years later that we needed to resort to anti-depressants to help him cope.

A snapshot of Brendan at age 7 1/2, just before the OCD became a major player, would show an imaginative, highly verbal child, with poor social skills, poor fine-motor skills, proprioceptive & motor-planning issues, & emerging visual/perceptual skills (thanks to intensive therapy). Although he had difficulty functioning at school (he wanted to be under a table most of the time) his first grade teacher, Paula, had the skills to bring out the best in him & really help him learn to function there. (Paula's skills came from not only being an experienced teacher, but from raising a son with autism as well.) Brendan started out in second grade doing the best he'd ever done with schoolwork (he could now see & track visually well enough to read & write). He seemed to enjoy many things in life- legos (which he could now build with independantly, thanks to the new visual skills), building with blocks, learning to ride a bike, & he was doing more socially with friends, like going to his first sleepover. He developed a great interest in Harry Potter & was very keen to discuss his theories about the mysteries in the books. Although very imaginative, he still mostly made legos for the sake of putting them together, although he sometimes set up tableaus illustrating scenes from HP or Bionicles stories.

Just around his 8th birthday Brendan began having trouble making decisions, getting terribly upset he'd make the "wrong" decision & sometimes becoming paralysed by decisions. He started getting extrememly agitated & frightened when he saw spiders & developed fears about touching certain things. We were (fortunately) working with our present child psychologist, who we'd started to see to help us deal with the perseverative behaviours when he was 5, & were able to get in to see him a little sooner than usual. He identified these new behaviours as OCD & recommended that we see a child psychiatrist. We also happened to see Brendan's pediatrician around that time, & it turned out that her research specialty was OCD. She loaded us up with information & materials, which we really appreciated. One thing that she told us was that 8 years old is often the time when OCD shows up in children, which we found very interesting. The summer after the OCD began was very, very difficult. Brendan's functioning became more & more limited. He developed fears & phobias at an incredible rate. He had psychotic episodes where he was so revved-up by the fear that he'd thrash around, hit himself, whack his head on things, scream, cry uncontrollably. It was heartbreaking. The evenings were the worst time of day for him & we nearly called an ambulance 3 times that summer because he was hurting himself & we weren't sure we could calm him down (although we finally did). He had enormous trouble falling alseep. His psychiatrist had him try anti-depressants at first (prozac), but he didn't tolerate a high enough dose (they would rev him up even more) to really help, although we could never completely withdraw him from them either, since that would cause frezied behaviour, too. Brendan developed a fear of not only spiders, but of anything that had touched a spider. When Charlie picked up a spider in a kleenex to dispose of it, Brendan noticed which hand he used & wouldn't allow him to touch him with that hand. He developed an aversion to his thumbs, particularly to the nails, & wouldn't hold anything using his thumbs. We found that if I taped his thumbs with surgical tape he did better, so we spent the summer doing that. He dropped things all the time because of his awkward, thumbless grasp. He couldn't write like that, either. He became extremely sensitive to touch & to certain smells & by the end of the summer I was the only person who could hug him. Charlie could touch Brendan's foot with his right foot. That was it. Grammie had to back-off with the hugs & kisses & she did an admirable job of holding back. I couldn't wear any perfume or use soap that wasn't herbally-based. If we had a sitter stay with Brendan they couldn't touch his bed or he wouldn't get into it (we found this out the hard way) & I would have to change the sheets before he'd get into bed. We did discover that one of my herbally-based sprays would "sanitise" things so he could tolerate them, particularly if there was an unacceptable odour there or if it had been touched by someone else. Finally, Brendan's psychiatrist recommended that we try seroquel when it became obvious that prozac wasn't going to give him enough relief. Brendan responded immediately. He was calmer & the fears began to abate, although he was still hemmed-in. When he started 3rd grade we brought in a can of the spray for them to use, so that he could overcome the many OCD triggers there. He began working much more with the consultant (special ed.) teacher because he couldn't stay on the classroom & finally the school asked our disrict to modify Brendan's IEP to include time with the consultant teacher (which they did). Another child's aide wore very perfumy lotion & because of this he developed his first aversion specifically related to a person. On the plus side, his teachers were able to help him sit down & explain to the aide why he ran away whenever he saw her, which was a great lesson in self-advocacy, & she sweetly responded by changing the lotion she wore at school. On the down side, Brendan broadened the aversion to any middle-aged african-amercian woman he saw, which has caused some misunderstandings ever since- how do you explain that your kid is not racist? However, when people could see just how specific the aversion was (Brendan's godfather was african-american as is his music teacher & he has no trouble with them at all, nor was he bothered by our young, female, african-carribbean music director at church) it became understandable, although this is the first time I've written about this, & sometimes it still feels like a "dirty little secret"...sigh.

It has been 3 years since this phase of our lives began. When the OCD became the major issue neither Charlie nor myself saw it as part of Brendan's autism, & in fact, the Aspergers became almost irrelevant in light of the changes the OCD had made in our lives. Until about a year ago I thought that the OCD was something to "fight" & "defeat" & I feel a bit ashamed of this. If I have any understanding of parents who say they hate their child's autism, it's due to our struggle with Brendan's OCD. It's very hard to have any positive feelings at all about something that causes your child (& you) so much pain. About a 1 1/2 years ago, though, Brendan also developed Tourettes, with most (but not all) of his tics being directly connected to OCD thoughts. We remembered that Brendan's neurologist had told us that this might happen, & we realised that we were not dealing with separate "diseases" within one brain, but a related set of neurological differences, which we have now come to see as falling under the umbrella of Brendan's particular brand of autism. The professionals we deal with (almost literally) day-to-day, Brendan's psychiatrist & psychologist, have never disputed this perception/perspective. Perhaps they see that this is what works for us... or perhaps they agree with us. Nobody's disagreed yet :)

To get back to where I started this trip down memory lane, Brendan's unique journey with autism seems to have taken him from being pretty functional (highly verbal, imaginative, articulate, not too many aversions to food/noise/odours) to relatively less functional as he's gotten older. He is certainly just as imaginative, verbal, & articulate as he ever was, & has added insightful to the list as well. But he is much more highly reactive to noises, tastes, smells, sensations than he's ever been in his life. He's highly reactive to his environment as well, thanks to the OCD, & far more disruptive than he was in kindergarten, thanks to the Tourettes. His learning difficulties are almost solely related to the OCD, although his resistance to using a keyboard has led us to what would have been a more functional alternative anyway, voice-recognition software, so there's a tick on the side of OCD :) Do I see all of this as the much-touted "autistic regression"? No, I don't. When Brendan's pediatrician told us that age 8 is the classic onset time for OCD, it made me wonder if that wasn't due to this being the prime age for things to get much more complicated developmentally. In Brendan's school, the classes are grouped developmentally, with K-1, 3-4, 5-6, & 7-8 graders taught together. But within the past 10 years it was determined that 2nd graders have very specific developmental needs that are best met if they are grouped only with 2nd graders. I really can see how many more demands are put on the kids as they get older. It didn't really surprise me that the transition to 5th grade this year has been very difficult for Brendan, & it's taking pretty much to the end of the year for him to settle into being in 5th grade... good thing he's with the same basic group next year, too! At home, I can see Brendan accomplishing some very developmentally-appropriate milestones- making his own breakfast, learning to use a knife, learning to use timers to help him self-regulate. But he also needs much more structure than the average nearly-11-year-old. He did begin to imaginatively play on his own with his legos (not just build them) around age 9, but these days the OCD interferes so much that playing on his own doesn't provide enough structure to overcome the thoughts & enjoy himself. His favourite play-time activity these days, other than the highly-structured online games he loves, is to play legos with dad. We've come to understand that Brendan doesn't trust other kids to play this way with him, & he seems to really crave the lego time with Charlie, who is fun & trustworthy, too. I love hearing the two of them playing upstairs, & I really admire my husband's patience & flexibility to give this time to Brendan, when most other dads with boys this age are moving onto more sophisticated pasttimes. Not to say they're not getting more sophisticated, as shown by their first-place finish in Brendan's first-ever stint crewing for dad in a sailboat race...

When it comes to wondering what or if Brendan will ever do certain things- go to college, get married, live independantly- basically we don't think that far ahead very often. It's not because we assume he will, though... right now these things feel as though they depend on so many variables that it would be just as valid to flip a coin to find out. This afternoon I'll be meeting with Brendan's music teacher to help him understand why Brendan's functioning is so variable in music class this year. Brendan has had this same teacher for music for the past 2 1/2 years, so the necessity for this meeting just underlines for me how much trouble Brendan is having adapting to the complexity of life as he gets older. Some of his biggest enemies right now are the assumptions that are made about how he should function... This is not to say that we feel hopeless about Brendan's future, nor are we any less than proud of the amazing young man that we are raising. I believe that, somehow, he will find the right niche for him that will give him a happy & productive life. In fact, that's what we've always been about, even before we discovered that he's autistic. "Nuff said!! :)

Relaxation works... :)

Wednesday was a busy day, but satisfying. Charlie took Brendan to see his psychiatrist first thing. It's been working out pretty well to have Charlie do the psychiatrist visits, with this "new" one (our 3rd in as many years) at least. One thing they discussed was the next phase in our continuing attempt to get Brendan off the seroquel. I've been reading good things online about the use of melatonin to help with sleep. Brendan's evening dose of seroquel is pretty much only necessary because the zoloft wires him up too much to fall asleep, so Charlie discussed the possibility of eventually substituting melatonin for the seroquel, & the doctor gave us the green light to try. So, we've halved his evening dose (from 50 mg. to 25 mg.) & have purchased 3 mg. melatonin capsules (vegetarian ones) to use if necessary. The past couple of nights Brendan has fallen asleep just fine (maybe taking 5 minutes longer than usual) to our nightly dose of Rachel Carson's "The Sea Around Us". We explained the melatonin to Brendan advance, & he's on board with the project- he said they learned about it at school, & anything that he sees as "natural" seems ok by him. Another cool thing that happened at the psychiatrist... Brendan had been refusing to even consider summer camp for this summer, mostly because of anxiety about meeting new people (for Mindstorms camp) & some already-established OCD triggers at the computer camp he's attended for the past 2 years. When Charlie mentioned this to the psychiatrist, Brendan said that he'd figured-out a way to go back to computer camp, in other words, ways to overcome the triggers. Wow! Not only were the psychiatrist, Charlie, & I amazed (& parental units relieved), but Brendan's psychologist, whom we saw later in the day, was impressed as well.

After the doctor visit, they went off for a haircut, since the long-ish, unruly hair Brendan had been cultivating for his mad scientist role in the class play were no longer necesary :) There is an ice cream parlour attached to the salon, so the main incentive for haircuts is to bring home some ice cream, which they did. What was I doing while they were off & about, you may ask...? I have been desperate to make a duvet cover for our new comforter that has been obnoxiously shedding sheep guard hairs (the coarser hairs in the coats of sheep that are not bred for yarn-quality wool) for the past few months. I had planned-out the project a few weeks ago by raiding my fabric stash & came up with enough fabric to do the job tastefully (hooray for stashes!). Wednesday is bedclothes-washing day, so it was a natural to try to get the duvet made, since all the bedding would be clean & free of hairs... I had designed it all & the fabrics were in a heap on the floor, so I had to cut them out (measuring twice first, of course, since this is true for sewing as well as woodworking :) & then patchwork the 2 sides. I had found enough asian-type fabrics for one side & batik fabrics for the other, so reversing it makes gives a totally different "look". I was able to get the patchwork sewn before lunch- hooray!

Brendan requested that we go to the local diner for lunch. Hmmm... it was a bit puzzling because the last time we went he barely ate anything (well, except for the fries...). Brendan has a disconnect (not unique to him, I have it too) when it comes to how he thinks something will be & how it actually turns out. He loves fries & particularly the ones at the diner. He prefers to go there & get them, rather than do take-out. Unfortunately, when he gets to the diner he starts feeling surrounded by "dead animals" (meat) & freaks out. Just about everything veggie on the menu could have meat added to it, & the very proximity of the word "chicken" was enough to make him veer away from that food choice. Sigh. He wouldn't order just fries & a milkshake because that wasn't a "healthy meal" (although we practically begged him to). So, he settled for nachos, too, but was in tears by the time we'd ordered, so just after fishing a lactaid tablet out of my purse (for his milkshake) I pointedly asked him questions about one of the characters in his new, AQ-based story. That worked beautifully, & he pulled his head out of Charlie's armpit & enthusiastically told us about this baddie- an interesting combo of Vader & Naraku. As advertised, he barely touched the nachos, but Charlie & I ate them along with our grilled-cheese sandwiches & we all enjoyed our meal. Afterward we gently talked to him about what was so difficult about the diner that day, & he told us about being surrounded by dead animals... & we talked about choosing different place to eat where he wouldn't be so bothered... (but what about the fries!?!).

I was able to work on the duvet cover some more after lunch, until Cherie arrived to stay with Brendan while we went to visit his psychologist. He was so psyched to see her & she was happy to see him, too :) On the way to the appointment Charlie & I went over what we wanted to talk about. My main issues were Brendan's difficulty at the end of the schoolday, screaming obscenities in the stairwell & banging his head on walls, lockers, & windows, & my other main concern was the increasing incidences of Brendan pushing my buttons to the point where I lose my temper. Charlie wanted to check out some techniques for helping desensitise Brendan to some of his OCD triggers that had been mentioned to him by a friend who is a retired child psychologist. One of the best parts of visiting Dr. M, aside from the great advice, is that we almost always come out with a sense that we're doing our best for Brendan, that our creativity is appreciated & doing good things, even when it seems as though we go backward sometimes. One of the messages we got at this appointment is that, as Brendan gets older, he's not going to respond as well to our efforts to help him behaviourally, but will respond to other adults & peers. I guess it's a developmental thing... (& also part of the button-pushing issue). Dr. M has been very impressed with Brendan's response to his OT's work with him to help with relaxation & ways to respond to anxiety, so he suggested asking her to help Brendan come up with strategies for dealing with the end of the day at school. He thought that some of the things we've been doing, like taking a different route & trying to divert his head-bangs into me instead of the wall, were good, but was also interested to know if Brendan behaves the same way when Charlie gets him (on Wednesdays) as he does every other day with me. Since the past few Wednesdays have been snow days we couldn't tell him, but he said that if he does behave differently, it's a good way to help him see that there are alternatives to his end-of day de-stressing behaviour & choose to do things differently. As usual, we came out of the appointment with new ideas & a sense that Dr. M is not only a skilled child psychologist, but genuinely likes our kid (that really helps, too :).

Brendan & Cherie had had a great time while we were gone. She told us how much fun it is to spend time with him when he's relaxed at home, since she sees a different side of him at school. I was able to work on the divet cover right up to dinner & after, & actually managed to finish it before bedtime!!

Here's the "asian" side:

Here's the batik side:

And here are the fun buttons (also from the stash) that close it at the bottom:


Yesterday we started out at the grocery store, which is not one of Brendan's favourite places because of the noise, confusion, & OCD triggers (such as meat). Sometimes we speak japanese though the whole trip, which distracts him, & he always is on the lookout for one special thing he can get, which also helps with anxiety. This time, he decided to cope by pulling his watch cap down over his eyes, hanging on tightly to the cart or me, & pretending he was blind. It was a hoot. He chattered about what he was "sensing" without his eyes & enjoyed the dizzy feeling of turning corners without looking. He did very well & it was one of our best shopping trips to date :) While we were there he mentioned that he's been feeling really good about life lately, & when I asked him why that was so, he said that being home from school & able to relax & do what he wants was helping. And also that he was glad that dad & I are alive... I mentioned his comments at dinner so Charlie could hear them, too. It was very heartening, & consistent with the Brendan I've been with all week. He is relaxed & much less ticcy, with things only getting uncomfortable for him late in the day, as it has been since he was a toddler...

The rest of the day was really relaxed. He played AQ, we read from "Eldest" to each other, we watched some Pee Wee. Very nice & mellow. I had been internally reflecting on our visit with Dr. M & over lunch proposed to Brendan that we start a new charting system just to cover the language issue... Brendan has been swearing a lot lately, & all attempts to make him aware of it & to take some control have not been very successful. He's been having a terrible time earning numbers for his regular behavioural charting because of it & it's been kind of demoralising to all of us, since Brendan's not feeling successful, & he's also not getting positive feedback for the other things he's doing well, So we agreed upon a new system where he earns something else (some Pokemon supplemental packs) if he gets stickers for 5 days (his idea) without swearing, & then language won't affect his regular charting. Charlie liked this idea, when we told him about it, so we're set to go... & no, he didn't get his sticker yesterday, but he didi get his number :)