Monday, July 23, 2007

'Nuff said... :)


Saturday, July 21, 2007

HP & B: how Harry Potter changed our lives...

Thanks to Joey's Mom it occurred to me that today is a great day for this post- it's been cooking for a long time, but just hadn't happened.

When I say "changed our lives" I mean it in a tangible, literal way- not just metaphorically. Our family would not have been the family it is without HP... & Brendan wouldn't have his IRA either :)

I discovered Harry when Brendan was a baby. I have been a kid-lit afficianado since- well, since I was a kid, so when a long-forgotten friend (thank-you, whoever you are!) recommended "Sorcerer's Stone" I was happy to try it. I picked up the next 2 in the series the next day, that's how hooked I was :) I remember that my next 2 dilemmas were: how old does Brendan have to be before I can read it to him, & when was book 4 coming out? Book 4 came out before Brendan was old enough to share the books with him (summer of 2000), but a little over a year later, when he was 5 1/2, Charlie & I decided to take the plunge. Brendan was in kindergarten & had a sophisticated conversational ability, so we were sure he could let us know if the book got too scary for him. We began reading it aloud in the car on the way to Pittsburgh for a Thanskgiving holiday with Charlie's family, made memorable by sufficient dysfunction that I spent a lot of time in a hotel room reading HP to Brendan. Bittersweet, for sure. It was a great distraction, though. I read the very last line of the book as we turned into our street on the way home. Brendan had loved it & was eager for more...

That very same fall was Brendan's first as an identified "special needs" kid, with an indeterminate diagnosis (some thought he had CP, due to his severe developmental delays) & a very busy schedule of OT, PT, & visual-perceptual therapy. It was our first year "in the system", learning to advocate for our kid, dealing with IEP's & service providers & school districts. Our bewilderment was akin to Harry's first year at Hogwarts, as were our challenges. It was also the fall of 9/11 & all of the world-changes that brought. Somehow, Harry helped us cope. In fact, the very first book Brendan wanted to read, with his newly-forming binocular skills, was "Sorcerer's Stone", although he gave it up eventually, since he really didn't yet have the ability to focus or track words on a page. But it was so heartening to see him finally want to read...

The second book, "Chamber of Secrets", ramps up the action & scariness, but we decided to go for it anyway, with the precaution that it we could read it any time but before-bedtime :) I remember experiencing the basilisk chapters with Brendan held tightly on my lap with Charlie reading to us, because Brendan was scared but he really wanted to know what happened... I also learned the value of a bit of quick editing as I read (particularly when we got to book 3 & the Dementors), to tone-down the intensity a bit for nearly-6-year-old Brendan. Eventually I got all of the books on tape & Brendan would listen intently to them (this was a few years on, when we weren't afraid of his getting too freaked out by the scary bits) for hours on end.

Fast-forward to 2003- Brendan was 7 years old, & "Harry Potter & the Order of the Phoenix" was released that summer. After dithering a lot 3 years earlier when book 4 was released, not wanting to stand in lines at midnight (Potter-mania had finally hit), thinking I was a "big girl" & could wait a day or 2 before getting it, then finding all the local bookstores sold out for days after (I found my copy in a "Linens & Things" store, of all places), I did the Amazon pre-order thing & had the book delivered by mail (which is what we've done ever since). Brendan & Charlie kindly entertained his parents, who were in town visiting, while I snuck away & read as much as I could. I finally finished it at some un-godly hour of the morning, & then Charlie had his turn- we decided that the book was a bit intense for Brendan at that point, so asked him to wait another year to read it. By that time I had discovered Mugglenet & was happily experiencing all of the Potter-excitement online as well.

I had never before participated in any online discussions of the books, although I was intrigued by the idea, when I read notice of a new, Mugglenet-supported discussion site called "New Clues to Harry Potter Book 5", based on a book of the same name by Galadriel Waters. The forums started-up in mid-November & I found them interesting (I loved people's sign-in names- so creative!), but I lurked exclusively for quite a while, it being too close to the holidays for me to have the time to participate. In early January of 2004 I took the plunge, although the most difficult part was figuring out my own sign-in name! I finally settled on the name Brendan had given me for Halloween that year, when he was Qui Gon (as a padawan learner) & I dressed-up as his Jedi master: Jedi Elgee (my initials are "LG"). I really enjoyed participating in the forums, particularly the insight & intelligence of some of the other regular posters. I found myself really thinking about the books & themes in them, & shared these thoughts with Charlie & Brendan, who helped me find even more ideas & insights. Nearly 2 months into my participation in the "New Clues" forums I was utterly amazed to be contacted by a site administrator (known to all as "elf") & asked to be a moderator. Yikes!! It required 2 OS upgrades for my mac to actually do it, since I needed MSN instant messaging to communicate with the other mods & admins. Mugglenet web-wizard Damon vetted me through all this (in one long night- I was downloading the upgrades via dial-up! It took hours!!) & I officially became a mod on February 29th, 2004 (the day that doesn't exist... :). (Also, the same day as one of my future mod-friends, ridgeback, became a member of the forums- hi rb!!). I was one of the second wave of mods for the forums & at times if felt as though I was riding the ebb tide of retiring mods, pulling me backwards, because it was hard at first to know who to contact if I was having difficulty as some didn't want to give me the time of day, but I persevered & found an amazing core group of hard-working, brilliant online friends. I do mean brilliant- these folks were thinkers, & on slow modding nights we'd share our own theories & discuss them (I got really good at coping with real-time, multi-person typed conversations, too :). Other than being brilliant (& a bit obsessed), the other amazing things about my fellow mods was that they were predominantly female (I was expecting just the opposite) &, drumroll please, they were predominantly in their 30's & 40's, a bunch of them being in their mid-40's like me. Such a revelation... Those creative sign-in names were hiding a lot :) One of my fellow-mods was a double PhD in physics & chemistry (& a mid-40's mom with 2 kids :). Others were writers, students, retired folks, new parents :) We were also an amazingly international bunch, with mods from the Netherlands, India, Canada, & South America. I learned a great deal about the world just sitting at my computer :) Brendan would sit with me while I chatted online with a friend in the Netherlands who was studying physics at university & have conversations with her about string theory... Oh, & the dial-up finally gave way to dsl when Charlie realised that I couldn't mod during the day (for fear of missing a call from school about Brendan) & encouraged me to look into something faster & more convenient.

Many of the online forums discussions became dinner-time discussions at our house. Brendan was incredibly proud of my being asked to be a mod (he now wears the Mugglenet t-shirt, sent to me when I became a mod) & couldn't wait to hear about the latest forums hijinks. In March of 2005 JK Rowling did an online chat on World Book Day & we had a forum discussing the answers to questions that were sent to her that day. One of the questions was "What is Snape's Patronus?", to which she replied that she couldn't answer that, since it was important to the future story (& we will likely find out today, after reading book7!). This question caught Brendan's interest, & he decided that Snape's Patronus must be a Dementor. I posted his idea in the forum, & the site admins loved this idea so much that they made Brendan an official mascot of the forums, naming him "The Crookshank" & sending him a certificate entitling him to participate in the forums whenever he wanted (as long as I was with him, there being an age-limit of 13 for participation in Mugglenet sites). He was soooo happy to have this recognition of his idea (& we were pretty tickled, too :).

The spring of 2004 was also when Brendan began to develop the OCD, with increasing anxiety & dysfunction. He'd had his autism diagnosis for nearly 2 years & it never occurred to us that he'd ever have more than that, or that he'd add a few more diagnoses to the mix... As I became more & more worried & stressed-out about Brendan, the forums provided a welcome distraction, & my online friends provided much-needed support. As I shared, slowly, tentatively, that Brendan was autistic & had developed severe OCD, I heard about their children born with chronic heart problems, relatives & personal experiences with anxiety. It was comforting & empowering. People I had never seen (&, to this date, we've only ever met one of our online friends face-to-face, although we've exchanged presents & holiday cards) were like friends holding my hand. They were a big part of how I managed to survive those first few months of helping us understand Brendan's newest diagnosis. Perhaps the biggest encouragement, though, was an unassuming email that we received in June... Galadriel had put out a notice a few weeks before, asking for participants in a new book project, to be published by her company, Wizarding World Press. They wanted to put together a book of fan essays devoted to the mysteries of HP, so were asking people to send them proposals for these essays. The deadline passed before I could even summon the energy to think about doing one myself, since my kid was barely functioning at this point. Then, we got an email from elf asking if Brendan would like to participate in the project. He would be the youngest essayist, at age 8, & he could write on anything he liked, although they'd love to hear more about Snape's Patronus... Brendan thought about it & decided that he would like to participate, so he dictated a reply email to that effect (I learned later that one of the Wizarding World Press folks thought, based on Brendan's email, that he was in his teens rather than 8 years old :).

This was an amazing thing for Brendan to do at this point in time. He was hampered by sometimes crippling anxiety, wasn't typing or even reading fluently yet (since he'd only had binocular convergence for 6 months or so, & his visual tracking skills were just as new). The last 3 months of 2nd grade he'd spent in a virtual (& sometimes actual) fetal position & none of us really understood yet what his prognosis was, OCD-wise. But away he went on his essay, with me along to help. He couldn't skim through the books himself, to find the info that he needed to prove his thesis about Snape's Patronus, so he told me what he was looking for & I found & bookmarked the places, which he then read for himself. He made lists, verbally, which I typed up for him. He developed a series of questions that he felt he needed to answer in order to make a good case for Snape's Patronus being a Dementor, then wrote expository paragraphs that answered his questions, & which he eventually put together as his essay. He had 2 weeks to do it (he had to finish early because the deadline was while we were on summer vacation), & he finished on time. He even added an intro section that explained how he'd been introduced to HP, which the WWP folks liked so much they asked all of the authors to do as well. After sending in his essay, life returned to "normal" (mostly learning what Brendan needed in order to live with the OCD anxiety). Brendan also finally read "Order of the Phoenix" that summer, having read excerpts to do his essay & not finding it too scary.

We didn't think much about the essay until October 2004, when we found out that "The Plot Thickens... Harry Potter Investigated by Fans for Fans" would be published (appropriately) on Halloween. We got copies of the typeset essay for proofing & that just whetted our appetites. And then the box with our complimentary copies arrived :) We decided to ask Brendan's school to put out a press release, so that they would get the publicity, & all 3 local tv stations covered it, 2 sending cameral crews to school to film Brendan reading some of his essay & answering questions. He was a bit nervous about being on tv, so we role-played it the evening before (with dad as a deranged cameraman, coming in for closeups with his cardboard-box camera :), first with Brendan interviewing me, & then me asking him the same questions. It was great publicity for school & the book, too, & Brendan came through with flying colours :) We were very excited to see the book prominently displayed at our local bookstores, & it was out favourite holiday gift for friends & family (autographed, of course). We also learned that they planned to have a discussion forum for all of the essays in the book, & the authors would moderate their own essay's forums. Brendan was allowed to do this under his own name (he decided to keep "The Crookshank" as his sign-in), with the understanding that I would be with him while he was online. He had filled out all sorts of fun questionnaires for the book site & was really looking forward to modding his own forum. Many of my online mod friends were also authors of essays in TPT (there were more than 50 authors from over 10 countries, ranging in age from 8 to over 60...), & everyone very kindly included Brendan in online chats (& even sent him birthday greetings by throwing a virtual party) once the new forums were up. As it turned out, Brendan's forum didn't go up until about 2 weeks before "Half Blood Prince" was released, so there was alot of online excitement about the new book at that point (& the possibility of some of the mysteries being solved!). By this time Brendan was typing on his own & he typed all of his responses to comments & questions in his forum. We brainstormed discussion threads to put up, some serious & some silly, & figured out how to post polls on various topics. It was really fun :) The only concession to his age was a warning that I put in, explaining that the author was 9 years old & asking everyone to behave themselves- they did :)

"Half Blood Prince" was the first HP book that we all read together (ok, so I read ahead) when it was released 2 summers ago. It took us about 2 weeks to get through it, & Charlie & I had to keep passing it back & forth when we got to the part where Dumbledore died because we were both in tears. The "New Clues to Book 6" forums started up in September, which I participated in as a mod again, & that extended our enjoyment of the book for quite some time. Eventually, though, people moved on to different projects, including the sponsors. I found my involvement in blogging & participating in the online autism community took more of my time, too, & drifted away from the online HP world (although Mugglenet is still my home page :). I know that many of my HP friends still keep up with us through my blog & I hear from them occasionally by email. I miss you all! You folks are the reason I survived that tough summer with Brendan to become a blogger & still-sane mom to my kid. Many thanks!!

Oh, & Brendan's IRA...? Well, he managed to earn enough through his royalties from TPT that we could start one for him. (We basically matched the money & let him blow some of it on bionicles, too- kid's got to have some tangible reward for his hard work :) I can just imagine Brendan at retirement age, thinking back on his HP days...

So that's how HP & JK Rowling changed the life of this family. I know that JKR has a copy of Brendan's book, since Emerson (the founder of Mugglenet) gave her a copy when he visited her for HBP's release. It's an autographed copy, actually. They asked all of the authors to autograph a pile of first-pages of their essays to be bound in special editions, for JKR & for each author. There were about 200 pages, I think, & I panicked a bit, since no way could Brendan sign that many pages... It was the first time that the editors of TPT realised that Brendan is autistic & was not just a super-bright kid :) We brainstormed a bit by email & elf suggested having a rubber stamp made of Brendan's signature (they even offered to pay for it, but it wasn't necessary). So that's what we did, & rubber-stamped "Brendan the Crookshank" on all those pages. And JKR has one of them... Sometimes I imagine that she might have come across the essay written by 8-year-old Brendan. It's a pretty amazing thought (makes me a bit teary). Throughout this whole experience, what has shone through for us & for Brendan are his capabilities. He wrote the essay at one of the most difficult times of his life to date & gained the joy & confidence of being a published author, a whole new online community of friends, & some cool legos out of it :) He found his writer's "voice" & it still shines through in whatever he writes. We have shared in this joy & are so grateful to JKR, GW, elf, & our many friends along the way.

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Tuesday, July 17, 2007

Just ducky days... :)

Here are a couple of pictures of the Pythagoras Switch-inspired, Rube Goldberg-type contraption that Brendan & Ck made last week.

I was particularly inpressed by the row of dominoes that climbed a block staircase in order to push a Thomas-train down the track & launch the lego projectile-thrower through a hoop :)

"Just ducky" is a pretty good description of how things are going lately. We've had 3 "Camp Ck" days so far & the guys are having a great time. Today they visited the science museum in the morning & took apart the old printer in the afternoon (I have yet to look at Brendan's room, but they did do the take-apart on newspaper, at my request, so hopefully there will be no maternal screaming when I do go up & look :).

Over the weekend Brendan & Charlie spent a lot of time together. Charlie is borrowing a boat from a fleet member who can't sail this summer (having sold his right before we left for Japan & not found a replacement yet), so he went to get it on Saturday morning, to take it to the club & rig it & get used to it. Brendan originally wasn't interested in going with Charlie, but when the idea was offered of fishing down at the club while dad worked on the boat, Brendan went for it. He hasn't been fishing since we got home from Japan & was ready to get out there (the fish are trembling :). He had a pretty good time, according to Charlie, even though the fish weren't biting. Of course, there was a side-trip for fries & a shake, which always sweetens the deal :) Later, when Charlie detailed the day to me, he mentioned that Brendan did spend a fair amount of time sitting in the car, which surprised me a bit. Basically, when the situation turned social (while picking up the boat, etc.) Brendan opted to sit in the car. Charlie said he seemed perfectly happy in there, & his anxiety when out of the car wasn't very difficult to manage, so I suspect that letting Brendan choose when & how to be social (as much as we'd love him to increase social contacts) is teaching him more about self-regulation than just upping the social expectations would ever do.

They had so much fun on Saturday that Charlie proposed a fishing trip in the boat for Sunday morning. This was no small undertaking, seeing as we're talking about a 15-foot sailboat (not a motor boat) that's built for racing, not for leg room :) Charlie managed to stow not only Brendan's tackle, but lunches, snacks, & an anchor- pretty darned good. They had a nice sail & then anchored in a cove for fishing. The only problem was that Brendan is accustomed to casting while standing up, & Charlie wasn't quite sure he'd manage to do it standing up without falling out of the boat... He did (manage it). He was also wearing his life jacket, & is a deep-end, Y-certified swimmer to boot, so the potential for disaster was minimal. Brendan was happy to catch 2 little perch before they sailed back to the club.

I am finally caught-up enough with coming-home stuff that I actually found myself at loose ends on Sunday morning. I was too tired to go to church & had a nice veg instead (Charlie pointed-out later that I'm allowed the occasional veg... :). It felt weird, & it made me realised that I'm a bit at loose ends. Before we left for Japan I managed to finish a lot of projects, which leaves me facing a creative void right now. It's not a comfortable feeling at all. I've been playing around with the origami books I got in Japan & also making lavender bottles- an old-timey craft in which you take an uneven number of fresh lavender sprigs (with long stems), tie them together right under the flowers, bend the stems down over the flower-portions, & then weave ribbon around the stems to capture the flowers inside. They end-up as lavender sachets when dried. I had given my last ones away in Japan & wanted to make some more but over the past few days, every time I decided I had a few minutes & went to collect some lavender stems, it would start to rain. Really, it became pretty funny. On Friday I finally got to do it, although it did sprinkle on me as I collected the first bunch for weaving. I continued bit by bit on Saturday & Sunday & have a bunch drying now, ready to be gifts in the future :) It's really hard for me, though, when I don't have a project in the works. I've realised over the years that I get the most pleasure out of life when I make things (particularly gifts), so I need to get my act together & start planning.

Sunday afternoon Ck came over so Charlie & I could go to our sailing fleet picnic & it was fun to share pictures from Japan & chat with folks. Charlie & I arrived in our yukata (cotton kimonos) from Kyoto which was pretty funny. Brendan & Ck went out for pizza among other activities & Brendan, of course, had a great time. When Brendan is with Ck, we've noticed that his anxiety is much lower & much better controlled than when he's just at home with us. Charlie & I have been discussing this (& Brendan & I saw his psychologist last week, too, & discussed this phenomenon with him) & we feel as though this is a break-through sign. Brendan is definitely better able to handle anxiety since we've been home from Japan. Perhaps it's because we brainstormed so many new & different ways to deal with it while we were there, & now he has an even bigger repertoire of coping strategies than ever before. Maybe it's just that we were out of our rut & could see the world (including anxiety) in a different way. Brendan definitely still suffers from the anxiety, but it's a lot more predictable. He has trouble leaving the house without a context or specific motivation. If we plan to walk in the morning, or walk to a restaurant for lunch, he can do it. If we decide on the spur of the moment to take a walk after dinner, he can't. he says he needs advance notice, so we're working with him & trying to do just that. At home, he's most susceptible to "fleas" (OCD thoughts) in the morning when he wakes up & in the afternoon, between 4-6:00 (always the "witching hours" for him). Sometimes we can set a ki barrier & he's fine & sometimes he's paralysed by anxiety & literally needs a push (gently :) to get moving or do something distracting. Yesterday he couldn't get rid of them until he was eating dinner & then they were gone like magic. That said, after waking me up a couple mornings ago because of "fleas" (needing my help to cope with them) & then apologising afterward for waking me up, the next morning he told me that he'd had fleas again that morning, but he was able to take care of them himself. This is the biggest change we've seen yet, in dealing with the OCD. He's been able to find strategies to deal with them, with our help, & then much more quickly than ever before, learn to use them on his own. It feels huge. I feel like I'm holding my breath, too, hoping that things will continue in this way. Pretty amazing- & another good reason to go out & see the world :)

Yesterday morning we had our walk after breakfast (it's still been pretty cool here, after last week's horrid hot days) & then had a tough time working on our weekly schedule. Neither of us was motivated... We decided to read together one of the Kamen Rider/GekiRanger magazines that we picked up in Japan & call it japanese practise :) We also decided that it would be a good day to go out for japanese for lunch, since we have both been missing the great food in Japan. We walked to our fave restaurant, just about 10 minutes away on foot, & had a lovely lunch. On the way back home I noticed that it was getting cloudy... by the time we were a block from home it was sprinkling, & we sprinted that last few houses, Brendan giggling like mad because he's faster, & me yelling "choto mate!" ("wait up!" in japanese :). We'd left the japanese magazine on the dining room table & so we decided to spend the afternoon doing one of the projects that came with the magazine- construct the Kamen Rider "Climax Form" belt & cell-phone-shaped activator. Many manga & kid-oriented magazines in Japan come loaded with "omake", free gifts. These are sometimes actual toys & stuff, but also have cleverly designed cardboard pop-outs to construct into working toys. They come with everything but glue or tape- this one came with the bits of velcro, rubber bands, & other odds & ends needed to make the toys. We had a great time working together & the belt can actually be worn (there's a cardboard buckle that attached to the rubber bands on the belt). Brendan, who usually doesn't like craft projects, was very motivated to participate in this one, so it was a lot of fun. We chatted while we worked, on a project we'd started thinking of that morning- making a wall hanging out of the dragon pictures we took in Japan. He likes the idea of printing the photos on inkjet fabric & then piecing them together (choosing a co-ordinating fabric) into a hanging for his room. I got a walking foot for my sewing maching a few months ago & have been wanting to learn to use it. Looks like a good creative project to get me back on track :) Brendan has been wanting to sew again, & since it's all straight seams he can do a lot of it. We'll let you know how we progress :)

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Tuesday, July 10, 2007

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...!

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Wednesday, July 04, 2007

Home from Japan...

Here's the view of Tokyo from our hotel window, our last night in Japan.

In a way, I suppose it was a good thing we didn't know how gruelling our trip home would be. Certainly, the trip to Japan didn't prepare us for how difficult the homeward one would be... However, to be fair, there were absolutely no hitches in plane flights or luggage & none of the many things that could have gone wrong did, so we were really, really lucky!

We were up pretty early Monday morning & had a nice breakfast in the hotel restaurant, then finished packing & had some time to lounge & get our last NHK public tv (home of Pythagoras Switch) fix before calling for a cart to take our luggage to the airport shuttle bus station right next door. We got our tickets & were on the shuttle within 10 minutes for the hour-long ride to Narita Airport. It rained on & off & was quite reminiscent of our ride into Tokyo, nearly 3 weeks before. We saw the sights we'd seen on the first bus ride with new eyes...

The bus porter had told us which stop to get off at & we had about an hour until we could check in, so Charlie & Brendan wandered (& finally got Brendan one of those vitamin drinks in little bottles he'd been angling for the whole trip, because it was his last chance :). Check-in, immigration, & security were a breeze- in Japan you don't have to take off your shoes or take the laptop out of the case, so there's so much less fuss, & there were hardly any other people in line with us. There was about an hour before our flight, so we hit a bookstore for last-minute purchases (Brendan has a natural homing instinct for Kamen Rider Den-O books :), for more distraction on the flight. And... we finally ate at a japanese McDonalds :) Yes, the fish sandwiches taste much better there... (naturally!)

When we finally boarded the plane we were ready to go, but Brendan & I soon were in tears, as we saw Japan receding in the window. We really want to go back!! We started out by looking at Kamen Rider books & puzzling out the japanese, then Charlie & I switched places & they played Uno for a while. When I looked up from a puzzle book, maybe 6 hours into the trip (we'd had two meals by then), I noticed Brendan had one of his Kamen Rider action figures out (one with millions of little pieces that fall off...) & was starting into meltdown mode. I decided that it was time to switch back & see if I could get him to sleep a bit (Charlie was glad to have a break :). I convinced him to put everything away & cuddle up with his blanket, & soon he was asleep. He only slept about 3 hours, but by then they were serving breakfast & getting generally ready to land in Chicago. In some ways, the time really flew, but in others, it was very uncomfortable & exhausting. I kept figuring out what time it was in Japan... When we landed it was somewhere around 2 in the morning & Charlie & I had done no more than doze a bit during the flight.

Chicago was the worst part of the whole trip, bar none :( Not only did we have to navigate immigration & then pick up our bags & do customs, having been awake for nearly 24 hours, but Brendan simply could not cope with the noise & the crowds by then. He was in so much distress from OCD anxiety in the immigration line (literally hundreds of people all in the same place) that they noticed, took pity on us, & unhooked the guide line so we could go ahead- no questions asked. We got him through the rest of re-entering the US on pure will-power, but then had to take a train (lugging the bags) to another terminal & go through security all over again. American security: with shoe & laptop removal (& the plush Pochama pokemon he was clutching to his eyes had to go in the plastic bucket & through the xray, too). Everyone was very professional & said not a word to us about our distressed kid, which was a huge relief. I even explained to Brendan that, if anyone asked, I would tell them that he was autistic so that they might understand (he said that was ok), but I never had to do it. We sat just outside security for nearly half an hour, getting him back together & Charlie went for cold drinks while we sat. Then we each took an arm & half-walked, half-propelled him to the gate, found a quiet place to sit, & we parked. Brendan lay down on the bench of seats with Pochama & nearly fell asleep, he was so overwhelmed. Charlie & I took turns hitting the restrooms & getting food. Our next flight wasn't for 3 hours, so we had time to eat & recover. Brendan alternated between doing just fine (regained his sense of humour & everything) & overwhelmed mode at the drop of a hat, but we were able to amuse him with more japanese books & making mazes for the pokemon plushies to navigate, using newspapers, shoes, & bags :)

The plane home was a teesy-tiny one, 3 seats across & acessed from the ground & up the stairs on the plane's door. Brendan was fascinated by this new experience, & then fell asleep before the plane even took off. He woke up about 15 minutes before we landed at our home airport. What a blessing!! Our next-door neighbour, Evelyn, who had dropped us off at the airport was waiting for us there- so nice to see a friendly, familiar face after the day+ we'd just had! The bags were there, too, & we got them to the car somehow & were home in 15 minutes.

Home looked really weird. The wrong proportions, the wrong smells. But it started feeling homey again very soon. We were blasted, of course. Evelyn brought over some yummy dinner & Brendan supplemented it with his favourite "no-chicken" soup from a can (tofu intead of chicken :). I called my mom to let her know we were home ok. Charlie got Brendan into jammies & into bed & he dropped off immediately. We unpacked & I decided against starting laundry that evening (that would have been "baka", as Brendan would say :). My hot shower felt so good I nearly cried. We were home & in one piece, & everything was home with us!

Yesterday was "the lost day". We drifted around, doing laundry, sorting through omiyage, putting things away. My body hurt so much I couldn't believe it, probably from hauling heavy bags & sitting on planes for too long (although it didn't feel bad at all when we arrived in Tokyo after the same length trip...). Brendan played AQ, played with his Kamen Rider toys, played games with Charlie, & watched movies. We watched the "Lucario" pokemon movie together, & it even made me cry in japanese... Grammie visited, to see with her own eyes that we were home :) Charlie went into work long enough to pick up an enormous box of mail & forms to be signed. Sigh...

Today we all felt a bit better, although I woke up at 4:15 & never went back to sleep. It was a rainy 4th of July, which, perhaps selfishly, suited us because we had no plans... We started thinking about the rest of the week- making a shopping list for tomorrow, Charlie going through the load of paperwork, he & Brendan taking Japan pictures & prezzies to the neighbours. I found that I couldn't eat when the clock told me to eat & was exhausted by 2:00 pm, so I took a nap. Charlie & Brendan headed out to spend some holiday time with sailing friends & I worked on tidying the house even more & getting caught up for the next few days' activities. I discovered that the newest Kamen Rider Den-O was online so Brendan & I watched it when they got home. This evening, at bedtime, he asked me to read to him (our usual, sometimes gruelling, routine before going to Japan), but I put him off (I was busy tidying upstairs) in the hope that he might fall asleep on his own. I went in after a few minutes & asked him what his favourite parts of the trip were, & he drifted off to sleep while he told me :) I asked Charlie the same question before he, too, went off to bed (although, with the fireworks right now, I can't believe either of them are asleep!!). Here is what they answered:

Brendan says that the best part of Japan was Kyoto, because Tokyo was too "urusai" (noisy), & because, although he enjoyed meeting japanese kids in Mizumaki, he was overwhelmed by their attention. He said he loved visiting all the temples in Kyoto, because the temples helped him to cope with "fleas" (his new term for "tics" :). He said that the calm & quiet, & the purifying wells & prayers all helped him a lot.

Charlie said that he enjoyed visiting the Onsen with Tomoko's family very much, but that his favourite parts of the trip were experiencing a different place, being totally out of our element & our ruts, & really experiencing a different culture. He said the trip to Uji (while we were in Kyoto) felt like our best full day in Japan.

I find myself also dwelling on how amazing it was to be out of our usual routine (for better or for worse) & to see our usual way of living from the outside-in. (I am still having difficulty getting used to people speaking english to me :) We tried so many different things while we were there, some which we would never stretch ourselves to do in regular life, for very good reasons! I was struck by the realisation of how very intense life with Brendan is, & how unrelenting his anxiety can be (& how demanding). And yet, there were times when he was stretched & rose to the occasion beautifully, & I was so heartened by these experiences. It helps me to understand that Brendan is learning & growing, becoming more capable of managing his anxiety everyday. I told Charlie this evening that, no matter what we might do next year for vacation, it will be easier because he's growing & learning. And the next time we go to Japan it'll be easier for the same reason (plus our japanese will be better :). I also find myself more focused on how I want our day to day lives to be, rather than reacting to how it is (because I'm immersed in it). I want to find ways to help Brendan become more considerate of others, even in the face of his own very intense needs. He has mentioned this to me, that he wants to be more thoughtful of others, so I want to find ways to help him. Like Brendan, I really enjoyed visiting the shrines & temples, & I really loved trying to communicate with people in their own language. There were so many beautiful things to see & experience. Another thing that I enjoyed so much about our trip was that there was so much time together as a family. In regular life, we tend to play ping-pong with Brendan, with Charlie at work all day & then coming home to dinner & then giving me a break from the intensity that is "life with Brendan". I take over right before bed time so that Charlie can do paperwork. The he & I sit for a few minutes & reconnect, then he goes to bed & we begin it all again the next day. While we were in Japan we were rarely apart & it felt very natural to do things together- from managing the subways to managing tics. It felt very good. When we weren't under the stress of keeping to schedules & planning our own days, it was really fun to be together, no matter how unevenly things went. I am left feeling really good about our family, & about being the family that we are. Perhaps the best & biggest gift of going to Japan :)

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Sunday, July 01, 2007

Last full day in Japan!

Hard to believe we're going home tomorrow!

We had a last breakfast in our favourite Kyoto cafe this morning, finished packing everything, then headed for the shuttle bus to Kyoto station. Charlie used our Japan Rail passes for the last time & got tickets on the 10:00 Hikari shinkansen to Tokyo.

We said fond farewells to Kyoto, & for the first half hour of the train trip I planned, in my mind, our return visit to Kyoto. There's still so much to see here! It's such a comfortable place to visit, too. Brendan & Charlie feel the same way. Brendan declared that we definitely have to come back :) And imagine how much better our japanese will be next time...

The train to Tokyo took just under 3 hours & the only difficulty was that they ran out of obento by lunch time. Brendan fired-up the laptop when he finally got bored with playing Uno with dad & watched some InuYasha. We picked up a couple obento when we got off the train, & luckily we didn't have to haul our very heavy bags terribly far to the taxi stand. Thank goodness! Brendan had an attack of the tics right as we got there, but in the hustle & bustle we couldn't do our usual- stop & set a kekkai- & you know what? He managed just fine. He was a little ticced-off at us, but he got over it very quickly. He said he used his fan to ward off the thoughts & we told him we were very proud that he was able to manage without us. We got to the hotel without a hitch & were in our room & eating obento before we knew it. Brendan really didn't want to explore right away, so we got hooked up to the internet & he played AQ for a bit, then climbed under the covers for a bit. We could see a garden with a koi pond right below our hotel window, & that motivated Brendan to go out & look around. When we got there, though, it looked as if there was a wedding going on in the garden (the most women in kimono we've seen on our whole visit to Japan :) so we decided to go back later. I had spotted a book store from the taxi & wanted to make a last look around for craft books & something for Brendan on the plane tomorrow, so I took off. I walked right by the Mizutengu shrine on my way there- something I thought Brendan would like to see. I had good luck at the bookstore- found a pokemon puzzles book & a magazine featuring our favourite Kamen Rider & Gekiranger shows (plus some fun omake- free gifts- inside) for Brendan & a kimono magazine & origami book for me. After I got back we just lounged around until dinner time. On the way to dinner we went back to see the garden:

There was a tea ceremony house in the garden, too, but the main attraction was the pond full of enormous koi...

We had dinner in one of the hotel restaurants (we ate in a restaurant!!) & Brendan was in an exceptionally good mood. We amused our waitress greatly by speaking japanese to her (she particularly loved hearing Brendan speak :) & really enjoyed our meal. We chatted about what we liked about Japan & how much we'll miss it. Brendan got the giggles often & his laughter was infectious :) After dinner, Charlie & Brendan walked over to the shrine. When they got back to our room Charlie got Brendan into the tub for a wash & soak. Now he's in bed & we're getting ready to do the same. We have a looooong trip back to the northeastern US tomorrow. Wish us luck!

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