Belated Happy New Year!

Wellllll.... I guess "blog bytes" didn't work as well as I'd hoped. There's no way of getting around being too busy to think, I guess, no matter how many tricks I try...

In retrospect, I think we did more than just survive the holidays, this year, which is a very good thing! We went into the season (beginning early in December with Hanukkah) knowing that there was a lot on our plates: mummers play at church, Brendan's annual holiday gift project, the usual preparations (wrapping, decorating, cooking), gifts for teachers, getting ready for New Years, spending time with friends & family, & a particularly busy patch with the minister search I'm involved in at church... and we did it all & had fun, too! We have evolved, over the years, ways to help minimise Brendan's anxiety at holiday time (for example, he gets to choose which big lego set he gets for Christmas) & it was particularly helpful this year because he had a precipitous rise in anxiety a couple of weeks before Christmas (not related to anything that anyone can identify). It was one of those (rare) occasions when his fears become so intense that he hurts himself & we wonder if we're going to be able to keep him safe. We had taken him off clonapin last October because he was doing so well, anxiety-wise, but we still had some in the house, & Brendan was sufficiently aware of himself that he agreed readily to take one when we suggested it might help, & it did help. He ended-up with just some broken capillaries in his eye (just...) & we were fortunate to be able to see his psychiatrist the next day. He suggested that we continue with the clonapin through the holidays, to take the edge off & help Brendan weather this new, higher level of anxiety, & then we could re-evaluate in January. I had started a "tic-log" at Brendan's psychologist's recommendation, since we'd noticed that anxiety-related tics had been getting more frequent, & we're hoping that we'll see some sort of pattern to guide us... The biggest concerns are whether this is a "blip" or a sign that Brendan's pre-adolescent body changes are making the medications work differently. Brendan & Charlie & I have discussed these possibilities a few times in the past few weeks, laying groundwork for any changes that we may need to make as he gets older. One of the most amazing things about where Brendan is at developmentally is that he can now tell us what's going on internally when he has severe anxiety, & identify what helps & what doesn't. He's made us aware that giving deep pressure can help when he's particularly anxious & has actually been requesting deep pressure (usually by pressing down firmly on his shoulders when he's standing or sitting) when he's feeling increased anxiety. It's made us aware that his sensory needs seem to be increasing as he gets older, so we've been talking to "the team" (psychologist, OT...) about what we can do. One night last week he seemed headed for meltdown again at bed time & Charlie hauled the foof chair (like a beanbag chair) into his room & plopped it on him, which not only made him laugh (the thing is really big... like his old ball blanket on steroids :) but relaxed him almost immediately. (We took it off after he fell asleep...) We really are in a new phase- Brendan as an individual & us as a family. He's even more a member of his team, & we are deeply glad to have his insights into himself to guide us.

Highlights of the holidays:

The mummers play at church- although the main rehearsal was cancelled due to a snow storm- went very well. Brendan played a shooting star :) He was wonderful. He managed to make the shooting star funny & touching without saying a word.

His holiday gift project (which I talk about in this post in Jedi Workshop ) was a big hit with his recipients & with him. He made his own style of "omamori", which are Japanese-style good-luck charms. Brendan chose the beads & made them almost entirely himself. He found the activity calming & satisfying. He would sit with the finished "omamori" in his hand, thinking good thoughts about who it was intended for, & it really grounded him.

Christmas was a lot of fun. Brendan prepared Rufus' stocking on Christmas Eve & had a great time sharing it with Rufe the next morning :) He thoughtfully put a banana, an orange, & some grapes into it (good for mole rats :) We had our annual Christmas tea & happily depended on others to bring or provide (a few of Charlie's patients always give us cookies) a lot of the food. We had a fun cookie-baking day right after Brendan was out of school & invited our friend, Alden (music director at our church & college student), to bake with us, so we did have some of the necessary traditional family delicacies on hand. There were 10 of us for tea, although Brendan did his usual parallel-play version, happily roaring around in the kitchen with his Christmas lego (its 1000-plus pieces already put-together by our lego-maniac) while we had tea in the next room.

The picture at the top is of this year's "osechi ryouri" which is New Year's Food, Japanese-style. We celebrated Japanese New Year last year, too, so we upped the ante by cooking more food & actually filling all 3 layers of the "jubako" box (unlike last year, where we only were able to fill 2...). Our first Japanese teacher, Tomoko, who is now in graduate school in Minnesota, was here for the holidays & mentored me through the cooking process as she did last year. Her mom, Nobukosan, whom we stayed with for a week last summer during our visit to Japan, sent us a box of the important things you can only get in Japan :) We called her by internet phone on New Year's Eve, too (it was already tomorrow for her), which was so exciting that most of my Japanese went right out of my head & I could only keep repeating "akemashite omedetou!" (Happy New Year!). Brendan did much better, speaking in full sentences, much to everyone's delight (& my envy...). I had such a great time cooking & chatting with Tomoko- it felt like I was absorbing her presence as much as I could because I've missed her so much! We have been so lucky to find a wonderful teacher to take over for Tomoko, Shizuka, & it was great fun to share the New Year's celebration with she & her husband, too. Grammie joined us as well & we played all sorts of games after eating the "osechi", "ozoni" (traditional soup), & obligatory "mochi" (sticky rice paste). Brendan enjoyed the games & friends, but decided that his "osechi" this year would be ramen... :)

So... now we're navigating post-holiday, back-to-school, back to regular life. Brendan's anxiety has risen again & we're presently sorting out how to help him manage increased homework demands which are making home life rather miserable these days. He's stuck between feeling like he has to do it (what will people think if he can't? what does that mean about him?) & needing the downtime at home to recover from just being at school. We've been taking the tack of reminding him that his needs as a person on the spectrum don't necessarily change just because the demands of school are changing, & then repeating this message clearly at school. Sigh. We are lucky to have a gem of a school for Brendan, but things do fall between the cracks sometimes... It's clear that Brendan is struggling with wanting to be independent & yet needing our help & input still. We are trying to figure out how to help him without taking away his independence- this is no doubt the tip of the iceberg when it comes to dealing with the adolescent Brendan that is appearing before our eyes. I am caught between amazement & awe at the person I see unfolding before me, & utter frustration as half or more of what I say to him is misunderstood... We both decided yesterday that we're not easy people to live with & are not sure how dad/Charlie manages to live with us. Probably because he loves us :)

Brain freeze...

If you're Kim Possible's Rufus the Naked Mole Rat (seen above with a real NMR at the National Zoo), brain freeze is due to chugging super-large colas on the fly. Although I have been known to accomplish the same thing with fresh-from-the-fridge soy milk, my current brain freeze is due to multiple factors. The result is that I haven't felt much like writing for a couple weeks... :(

Brain freeze cause #1 was transitioning from Japan back to home. I never before realised that speaking (imperfectly at best) a different language for 3 weeks actually reconditions the brain (or, at least, my 49-year-old brain), so that it took over a week for me to remember to speak english to people outside my family, & then caused my brain's language-central to kind of shut down for a while. I'm better now :) Brendan didn't seem to have this difficulty, but he wasn't trying to talk as much as I was, & he's 11, for goodness sake (flexible brain). We've started japanese lessons again with our new teacher, Shizuka, & it's going really well. For the first couple of lessons I was still in brain freeze, but Shizuka was very patient & slowly she got an idea of what we knew & where we wanted to go. The part of the lesson with Brendan is mainly playing games (in japanese, of course) & reading some of the kids' books we bought in Japan, which he's enjoying. She's witnessed one meltdown (one of only 2 since we got home from Japan, & not at all related to our lesson) & it didn't faze her a bit. Hooray! :) It's really good to get back to it & also to chat about things we saw & learned in Japan, getting more understanding & insight into Japanese culture. I'm going to ask her to help me write an email to Nobuko-san soon, too (Tomoko's mom, whom we stayed with for part of our trip) since I'd love to see how she's doing & thank her again for all she did for us.

Brain freeze cause number 2 is more personal, & the main reason (I think) that I haven't been able to write. Some long-time misunderstandings between myself & Charlie's family have come to a critical point in the past few months & I've been doing a great deal of "work" on this stuff with my therapist. Sigh. There's no real win-win in the situation I'm in, so I've really been stretching myself to figure out how to make things livable, & to minimise the effects on my husband & kid. Charlie's been supportive & patient, & is the main reason I'm still sane. Dealing with this has sapped a lot of my energy & so Brendan's borne the brunt of a lot of this in the form of lack of patience & understanding, but things are getting back to normal & we all seem to be intact. Whew.

Brain freeze causation #3 is more elusive, but appears to be a lack of creative direction that has had me pretty miserable. Before we left for Japan I finished up a lot of projects- left few things unfinished, few threads hanging. Not good. There wasn't anything to just dive into when I got home, to rev-up the creative juices. To be honest, for the first few weeks I was just too tired & disoriented to do much, which always makes me very uncomfortable. I am never comfortable when I don't have lots of projects to do, lots of pots boiling, so to speak. On top of this, with my low-energy state of being, it's been really easy to let go of the usual summer projects that Brendan & I do together. He's been having a blast with "Camp Ck" on Tuesdays & Thursdays, & the other days of the week have been full of appointments & other busy stuff. We've talked about doing some things, but I just haven't had the energy to push it. Finally, though, I seem to be finding direction. At the indigo workshop we visited in Kyoto I found inspiration to try some new things with natural dyes, & for the past week or so I've been starting the process of exploring some of that inspiration. I got my natural dye book out & discovered some dye plants I never tried to use before that grow in my own yard (birch leaves & bark! coreopsis! elder leaves!) so I've widened my scope & now the house is full of yarn (& silk scarves!) in various stages of the dyeing process & the freezer is full of dye plants waiting for the pot. My next-door neighbour has been sharing plants from her yard, too, & it's been really fun to share my ideas with her. It's really nice to have the creative spark back. It's also given me the energy to begin the yearly project of knitting 6 pairs of socks for Brendan- woolies for the winter. Last year we reached the milestone of Brendan's socks being the same size as mine (& I didn't have to knit all 6 pairs, since I could give him a couple of mine, too :). This year his feet are between my & Charlie's sizes- it boggles my mind. I'm nearly done with 3 pair, & hope to finish the job before it becomes a "job", if you know what I mean :)

One of the reasons I'm happiest to be recovering from brain freeze is that I'm getting my energy back for Brendan. His work on the OCD anxiety has been so dynamic this summer that I need to be on my toes & ready for the times he needs some facilitation. It's awesome to observe & participate in this work of his. (Yeah, it's sometimes annoying too- like when he yells "fleas" in a panic, from another room, & I think he's yelling "please!" & have no clue what he's talking about/asking for... sigh.) We've started talking about the return to school & how to manage things that were at the top of his anxiety list at the end of 5th grade. He's now much more receptive to thinking about his human "fleas" (what he calls the OCD thoughts these days) as human beings with feelings, & let his own feelings of compassion balance the "fleas" he has about them. We've been talking about different ways to set "ki" barriers & the different ways he can protect himself from anxiety attacks, like carrying "omamori" (Japanese-style good luck charms), burning incense to purify "flea"-infested things, & shoring-up his energies so that he's not as vulnerable. We've talked about making our own omamori by sewing little pouches & putting crystals & herbs in them. I'm finding a strong sensory component in many of the things that are helping him- smell & touch helps him feel more secure, so we've been talking about that, too. His ability to analyse his anxiety is amazing these days. It's a lot more fun/interesting for me to be a partner in this enterprise, rather than the one seeking & providing what help I can. The flip side to the new maturity is that we're getting some "teen attitude", too. He can be really touchy if I appear skeptical of things he says, or doubt his judgement. We've always sorted things out afterwards, but I know this is just the tip of the adolescent iceberg. I've explained to him that questioning his judgement is just plain going to happen, given that he's still growing & learning what he needs to make good judgements. I have shared some indelible childhood moments of my own where bad judgement wreaked havoc, but have also explained to him that it's a natural part of his growing to resent my trying to intervene/protect him. I hope as long as we can maintain respect for each other we'll be able to get past the resentments to come...

So... that's where we are right now. Not quite ready for school (I don't even know what day he starts- we've got a few more weeks!), but definitely in end-of-summer mode. We've been enjoying japanese food (home-cooked & at our fave restaurant) & have found we can practise what we learned in Japan with some of the waitresses :) & getting to know our new japanese teacher. I finally found a positive way to encourage Brendan to practice the Dragon voice-activated software this summer, by allowing him to earn bionicles for time spent Dragoning... so he's been emailing grandparents & writing poems & stories, & 6 Toa Mahri later is defiinitely more proficient with the software (yay!). He was also psyched when I mentioned that the school district will be giving him a laptop with Dragon on it to use at school this year, which encouraged the practising, too :) We've been walking around the block every morning & after he finished "Deathly Hallows" he developed an interest in collecting wood from different trees to make wands, so we got out the tree identifier (& our neighbour very kindly gave him a lovely tree book) & found twigs from 8 different varieties of tree on just one circle around the block! He's in the process of stripping, sanding, & tung-oiling the wands. Brendan got the chance to spend time with his best buddy yesterday, too, (& just as importantly, I got to spend chat-time with his mom & dad :) & that was just lovely. Tomorrow I hope we'll begin the omamori-making. Should be interesting... :)

Tokyo Day 5...

A funny thing happened on the way to the Senso-ji Shrine...

Well, not quite on the way. :) We all woke up at our usual 4:00 am-ish (big sigh) & so we had resolved to be back from our travels by mid-afternoon so that we could try napping to see if that might help us adjust to the time difference. The idea was to leave the apaato just after 9:00 am (to avoid rush hour), but Brendan fell sound asleep on the sofa just before we were going to leave. Charlie & I have learned that it's best to let Brendan follow his own body's rhythms, so we tiptoed around for a bit, & when it seemed that he was going to sleep for a while, we turned on the tv in the bedroom & found the cheezy samurai show station. (This is a real station- I'd read about it, but watching it was sublime, although I am a sucker for costume dramas :) Brendan slept for nearly 2 hours, so we decided to check out a nearby restaurant that appeared to have "american food" for lunch instead of jumping on the metro. I was psyched- we've been here for nearly a week & I've only eaten in a restaurant once! The tics were pretty well under control on our walk to lunch & they had fries & a milkshake for Brendan (I carry lactaid tablets for both of us :). We enjoyed a leisurely lunch & the waitstaff seemed to enjoy our (particularly Brendan's) attempts to speak to them in japanese.

After lunch we walked back to the apaato &, at first we thought just Charlie would go on the metro to Tokyo station to buy our tickets for the Nozomi (bullet train) for Wednesday's morning's trip to Kyuushu (to stay with Tomoko & her family). But Brendan decided he really wanted to go shopping we we knew there were department stores near the station, so we all headed for the station, Brendan with a cold coke in hand to fend-off tics. He really seemed like a different kid after his nap. More relaxed, happier, & the tics were pretty well under his control. They were there, but he was able to keep them from bothering him by skipping & holding the coke. We took 2 different lines to Tokyo station, which took about 20 minutes. Our only mishap occurred while Charlie (with some minimal linguistic assistance from me) was buying the tickets. Brendan was sitting on a bench behind us when we heard him yell "mazuey!" (which means, literally, "yucchy", but can also mean "this is bad!"). He'd been swinging his coke & then opened it to take a drink... you can guess the rest. I was able to clean it up with just one mini-pack of kleenex & nobody seemed too fussed. They really cut kids a lot of slack here in Japan, which I am appreciating very much! Brendan & I went out after that & let Charlie finish up his transactions.

We got a picture of Tokyo Station, built in the 1920's & only minimally damaged by bombs during the war...

... and Brendan got another manhole cover-ish picture :)

We headed out for a department store but discovered that they had no toy department (Brendan is really keen to look for Kamen Rider Den-O paraphenalia that he's seen advertised after the show. See- this is one of the reasons we don't watch network tv in the US, & normally we're safe from adverts that originate in Japan, but since we're here... & I'm kind of curious myself about them :). Looking at the map, we realised that we were within a couple blocks of the Pokemon Centre, so we headed back there & Brendan was delighted to find a pokeball set he hadn't seen the other day, plus we got a different Deoxys dvd & a couple more plushies :) For me :) :)

We were pretty tired when we got back home, in the late afternoon, so we hit the 7-11 (& finally found some onigiri & sushi there for dinner- yay!) & then went back & vegged in front of the tv until it was time to eat. We flipped between Disney, marvelling at the japanese dubs for familiar shows, & NHK educational tv. It actually was a treasure hunt, since we really were hoping to catch "Pythagoras Switch" on NHK & Kim Possible in japanese. We hit gold!! We saw an advert (during "Riro andu Suteechi") saying that KP would be on at 5:30, & when we switched to NHK at 5:00 we caught Pythagoras Switch!! Both shows were sublime. We took turns shouting out plot developments as we puzzled them out (during KP) & Brendan decided he really liked the character voices better in japanese, even Rufus' :)

After a yummy dinner of 7-11 onigiri & a huge bowl of edamame, Charlie got Brendan into the shower & jammies, & then we played a few rounds of Uno. Then we put NHK back on until Brendan was practically asleep on the sofa. The kids' programming segued into general educational, & a show came on where they seemed to be interviewing a mother... then I caught a word I recognised: "jiheisho". Autism!! I listened more carefully, & indeed, the show was about a family with an autistic child. I couldn't believe it. We've talked to Tomoko about the attitudes toward autism in Japan & she had indicated that Japan is way behind the US & Great Britain in terms of attitude as well as treatments. It makes sense that a culture that depends so much on conformity would have difficulty adjusting to those who do not fit in & that need specialised help. So I was so heartened to see this programme on tv. The tone was respectful, although definitely not upbeat. I heard the words for "terrible" & difficulty" a lot, but the mom being interviewed seemed loving, if sad. There was discussion of the effect on other siblings in the family, & they definitely showed the child, maybe a couple years younger than Brendan, in a school setting. I wished I could have understood more, but Charlie & I were pretty amazed to have caught it at all.

All in all, the best day yet in Japan! I'm hoping this means that we're all getting accustomed to our new environment. We'll try visiting the Senso-ji Shrine today- our last full day in Tokyo!

Some things to be happy about...

The getting-dressed-for-school timer is working! The past 2 mornings Brendan has been dressed in record time & happily legoed for the rest of the 15 minutes until the timer has gone off. Not only that, but we've both had a lot more energy at & after breakfast. Yesterday I had time to empty the dishwasher between breakfast & leaving for school- a first. I think we're on to something... :)

Brendan has been on the lower dose of seroquel for 9 days now & there has been no significant sign of any difficulty. He's falling to sleep just fine & although he's a wee bit ticcier in the morning, he manages just fine. I would shout hooray, but I'm too superstitious... :)

This week back to school has gone very well. Brendan has found a great deal to enjoy at school every day this week. This afternoon I went in at 12:30 to work with him for an hour on Japanese. We began our session just after outside time (which he said wasn't as enjoyable because the snow was all "scummy", & then proceded to explain to me that he thought his preoccupation with hygeine was due to his being autistic... his words :) & it was obvious that he was still not quite ready to settle down, so I asked if he wanted some deep pressure & he said yes (!). So I stood behind him, as his OT has shown me, & pressed down for about 30 seconds. He said it felt great & that he was ready to work. (As a side note, we have a family joke about the future of my giving him deep pressure, as he is now just 4 inches shorter than I am... I told him today that soon I'll be hanging off his shoulders in order to do it, which made him giggle.) It was a great japanese session. His recognition of the katakana is coming along nicely & he read hiragana to me for about 15 minutes (from our new "manga moods" book). We played "I see something" in japanese for the last 15 minutes & that was a hoot. Next time I'll bring in one of the picture dictionaries so we can say the names of even more objects in japanese...

I found that iTunes has new Kim Possible episodes for downloading, so I purchased 6 today. Brendan & I had a great time watching the first 3 this afternoon. That Rufus... :)

And... remember the wool I spun into yarn a couple of weeks ago? I finished knitting my new mittens this afternoon. Yay! In the end I decided to make lined mittens- the one on the bottom in the picture has the lining pulled out. I had finished another skein of handspun just to get it off the bobbin (where it had been languishing for 2 years...) & it was so soft I thought it would make a great lining for my mittens. This winter was so cold & my greeter job at school has me opening & closing the door for at least half an hour, so my hands have been getting really cold. I thought the lining would help them last longer, too (my present mittens have had holes mended once already, & are ready to be mended again). I'm thinking of making a pair for Brendan now, & then maybe Charlie, too. These are warm mittens!! (Which I will not likely wear much the rest of this winter...)

Rufus resting...

Anyone who's been following my blog for a while will know that Rufus is Brendan's super-best-buddy/transitional object. I blogged about Rufus back on February 9th, 2006 (the new blogger won't let me link to the post right now, though :( ) & explained the huge role he has had in our family's life since he arrived Christmas 2004. He even had an important role in Brendan's birthday party last April, & was featured on the thank-you cards we made post-party :)

Brendan carried Rufe to school every day for about a year & a half, from February of 3rd grade & all through 4th, & having Rufus there really helped Brendan manage throughout the schoolday. He helped Brendan make friends, too, since the other kids were often intrigued by him, & Brendan was always happy to speak up (in Rufus' voice, sometimes) when they asked about him. Rufus had a role in the 3rd grade play (he played a chicken, wrapped in a feather boa- how many parents have been asked to find a chicken costume for a plush naked mole rat, I wonder?) & also did a solo during the all-school concert that same year, singing the first verse of "Gary Indiana" (Brendan did an amazing job of hitting all the right notes in Rufus' funny, mole rat voice). Rufus was also Watson to Brendan's Holmes for Halloween 2 years ago, with a knitted vest that matched Brendan's caped coat...

When Brendan moved up to the "big kids' floor" this year, & into 5th grade, we all (including Brendan) came to the conclusion that Rufus should stay home from school. It was partly because of the "big kid" thing & partly because Rufus was starting to show the wear & tear of life with Brendan. I have been called upon for emergency mole rat sutures on more than one occasion, causing great anguish for Brendan, & poor Rufe has some permanent stains from everything from being mouthed by a distressed boy to being used as an impromptu football... At first it was hard for Brendan to remember to take Rufe out from his right armpit & find a safe place for him at home. Sometimes he was behind a sofa pillow, sometimes (disconcertingly) under the sofa cushion I usually sit on as I work on the laptop. These days we've been tucking him into Brendan's bed after Brendan gets dressed, surrounded by friends...

It's bittersweet, having Rufus less involved in our lives. I can't tell how many times he's saved us during meltdowns by doing something silly or endearing & distracting Brendan from his misery. Brendan told me recently that Rufus doesn't help as much as he used to, when things get out of hand, but I think that this is as much a part of Brendan growing-up as Rufus spending less time in his armpit. He still gets out & about- yesterday's snow day had Rufus back in his usual place for the day, & he was hugged mightily at bedtime when OCD distress was giving Brendan a great deal of pain. But it is bittersweet... I miss having Rufus' manic, goofy smile peeking from under Brendan's arm. I miss Brendan talking in Rufus' voice to cheer us up. Happily, though, Rufus is safe & warm & gets a lot of sleep these days (we imagine him as being a night owl now :).

And for anyone wondering what things look like at our house, with all the new snow: