B's new pen pal...

We finally got B's first letter to his new pen pal, Seiji, in the mail yesterday. Hooray! B typed a letter in both japanese & english & we also included a copy (6 pages) of the database we made this summer of japanese pokemon terms translated into english & a picture of B & Rufus (Seiji's mom had already emailed a picture of Seiji with his dog). We got the letter out just in time because Tomoko arrived for our lesson today with an envelope from Seiji & his mom containing more japanese pokemon cards :) This time it was not only cards passed down from Seiji's older brother (who's outgrown them) but 2 brand-new supplemental packs- pretty nifty! Tomoko decided to use some of the pokemon cards as the basis of part of our lesson, too. She printed the names of some of the pokemon in katakana (the alphabet mostly used for names of pokemon, & the alphabet B has not started learning yet) with the hiragana letters underneath. B reads the hiragana pretty fluently, so he was able to read the names, but then he had to find the right card- which meant that he had to match the katakana letters :) I realised that it was a very sneaky & effective way to introduce B to the katakana & so I did very little to help out :) (I read both alphabets fairly fluently) He did a great job of matching the cards & we talked about what the names might mean, compared with the english versions of the names. We took a brief break in the middle to enjoy yet another box of goofy japanese candies that I'd found- mini ice cream cones made of chocolate & cookie. The inside of the box explained the "virtues" of eating each of the colours of candy: orange ones gave you energy, cream ones made you good at schoolwork, & pink ones, if shared with someone you like, would make them like you back. B did the 10-year-old gross-out over that one & we cracked up. B was very focused on the lesson- I think he managed to stay with us for 50 minutes or so, which was fabulous! Tomoko ended by requesting B ask her questions in japanese, so he asked her 3 questions & then asked to be excused by saying "gochisosamadeshita", which is how you ask to be excused from the table. Tomoko laughed because one of the translations is "thanks for the delicious food", but got the picture. Then she & I worked on verbs. I am trying to learn to recognise verbs by ear, as well as use them in sentences. When I use them in conversation with B he learns them too, & says them back to me, which reinforces my learning. It was fun to learn more, but after a while I feel like my head is going to explode :) Tomoko is a great teacher, though. We're so lucky to have found her!

After lesson I suggested to B that maybe he could send some of the english pokemon cards that he has loads of duplicates of to Seiji, to thank him for the japanese ones & give Seiji some fun practise with english. Tomoko had told us today that Seiji's mom is absolutely delighted that B wants to write to him & help him to practise his english, which he just began learning this year in school. Seiji is very excited at the prospect of getting mail from the US, too. What really got B excited was the possibility of visiting Seiji when we go to Japan next year. Since he lives pretty close to Tomoko's family, on the southern island of Kyushu, & we'll be visiting Tomoko's family while we're there, it's a pretty good bet that we'll get to do it. It'll be fun to help B learn things to say to Seiji in japanese, other than fart & butt :) Ummm... yeah, could be interesting...

Seeing too far & too clearly...

I made a comment yesterday in Kristina's Autismland blog that I found myself trying to live up to yesterday... :) It concerned trying to stay off the roller-coaster of reacting to every individual event by looking at the gestalt, or big picture, of our life. B had a difficult afternoon at school yesterday, topped off by realising when we were leaving that he'd misplaced his lunchbox. We looked around the 3rd floor, checked the lost & found, & by the time we got back to his classroom one of the other teachers had found it by the lego station in her room. B was sitting on the landing at the top of the stairs because he was so stressed that he couldn't come back to the classroom area. I thanked the teacher profusely, collected B, & we left... not before he had a good head-knock on a locker, which I tried to re-direct toward my relatively softer shoulder. As he was getting in the car he began to tic loudly (the one-on-one aide of a classmate, who has become a major tic trigger, was going out to her car, too) & then dumped himself into the seat & started sobbing. He was utterly distraught about school, & somewhat incoherent, but every time I tried to introduce another topic to distract him, he'd start sobbing again. Sigh. He calmed down when he remembered that we had ramune at home for snack.

I hoped that sipping ramune together would help him recover from his day, but there was so much on his mind that he started crying again when he was done with the drink. I led him into the living room so that we could sit & hug & talk. Unfortunately, B went into meltdown mode when he got to the sofa, but I hauled him back up on the sofa from the floor & put my arms around him & told him he could cry but not melt down (so many of his meltdowns happen on the sofa, because it's soft & safe, that C & I have decided that sometimes just being on the sofa can precipitate a meltdown). He seemed to accept this & started sobbing & moaning about how horrible school is. He said that the whole purpose of 5th grade is to prepare him for high school, where there's tests & detention ("ok, too much Kim Possible" I thought...), & what's the point of going someplace where you can't learn what you want to? Why do people have to go to school so they can learn to get a job & make money so they can live? Why is everything based on money anyway? Why can't he learn by himself, learn what he wants to? Even in his favourite classes like science he has to spend time writing or typing, why can't he just enjoy learning things? His conclusion was that he hates the way the universe is set up & doesn't want to live in it...

It was clearly not a time to try to reality-check him or make pollyanna observations about the way things could be different. It was time to listen. I did mention that I had to write the results of my experiments when I was a scientist, so I could share them with others, but basically I think that his points were much more global... One thing I think that B was saying is that school is not being fun right now. He's not finding the joy in learning now that the ante's been upped & there are more expectations of him. He's heard very clearly that many of the things they will be learning in 5th-8th grade are specifically to prepare them for high school. I think that B is still too overwhelmed by the changes this year (new floor, new classroom, new kids) & higher expectations to be ready to meet the challenges. I'm wondering if he's feeling insecure about his ability to be successful, not only in school but in his life. I wonder if he's telling us that we need to meet him in the middle, rather than keep upping the expectations, particularly when it comes to communication (writing & typing). Although it was clear that B was experiencing some extreme feelings, I think that many of his concerns were right on target.

After he wound down, I told him simply that I was sorry that the universe seemed an awful place to live, because I couldn't imagine a universe without him... & he said he couldn't imagine universe without me or Rufus, which got us both crying. When we were calmer I decided to change the subject by confessing to him that I'd put a photo of Skitty in the blog yesterday (he was hugging Rufus & Skitty through it all) & he perked up & wanted to know why. So I explained that I'd been writing about how he was telling Skitty about things & I thought everyone should see how cute Skitty is. He smiled at that & made Skitty noises ("neh! neh!") & soon he was ready to move on... He asked me to sit with him while he played the bionicle game, so I got my knitting & sat with him a while, but it was obvious that he'd reached an impasse with the game, & eventually he made the very wise decision to do something else on the computer...

The rest of the evening went well. We had leftover pizza for dinner which was a real crowd-pleaser :) B had a bath, legoed (he's trying to recreate all of the rahi from the game), & played some more on the computer before it was time for story & sleep. We are getting to some intense parts of "Over Sea, Under Stone", so I read a bit extra so he'd feel some resolution before falling asleep. After he was asleep, C & I sat & processed B's day. We both came to the conclusion that our B sees too far ahead & too clearly for comfort (his or ours). Grandma called it "borrowing trouble" :) As admirable as it is for him to be so perceptive, we don't want him making himself crazy with worry about the future. C reminded me that one day's woes don't make for a whole school year (remember the gestalt thing?). I just want B to find a sense of comfort with where he is at school because I think that will lead him back to the joy. I want us to be open to the possibility that he may need to find alternate ways to communicate his learning- tape recorder? voice-activated computer typing?- & not assume that the way everyone else does things is ok for him... I began to consider home-schooling for high-school (C says it's too early to decide, but I want it to be well into my consciousness by the time we have to :). I don't want him isolated from others because a lot of his learning comes from other kids. I just want him to feel competent & happy.

B was ready for school this morning, in spite of his upset yesterday. We filled out his engine chart & he made toast himself for his breakfast. So far, he still has trust in school & the possibility that good things can happen, thank goodness. On the way to school we talked about how the attitude with which you apporach something can affect what actually happens. I told him that I try to put myself in a positive state of mind & only imagine the things I want to happen (not the "nots") when I go into unfamilar situations. I told him that trying to see the humourous sides of things can really help, too, & we reminisced about my fall at the grocery store a couple weeks ago & how it had ended-up being funny. B was giggling at the things that had happened (scaring the lady next to me when I fell, ending up with a lap full of ice) & what I'd been thinking when it happened, which I think contriubuted to it turning out to be funny. When we got to school I made sure Cherie knew some of what we'd talked about yesterday, & she told me that they are working hard to clean out a broom cupboard so that it can be turned into a private/safe space for B to work in when he's overwhelmed. (It's right outside her office) B went into his morning knowing that I'd be picking him up early today, per our agreement, & that we'd be off to McDonald's for the next part of the bionicle promo, before going to see his psychiatrist at 3:00. Somehow, I suspect that'll get him through a fair amount of what school throws at him today :)

Educating Skitty...

Yesterday was my first full day off from dropping off & picking B up from school. C & I have evolved a system where Wednesdays, formerly his day off, were my day off from the school routine. Now that he works 2-3 Wednesday mornings/month, he's set it up so he can still come home & take B to school- bless him! Waving goodbye to the guys has it's up-sides & down-sides, though. Without the momentum to get me out of the door it's hard to know when to start my day. On days when I've got the motivation, however, it can be a wonderful thing to have so much uninterrupted time. Yesterday was one of the days when I had to create my own momentum, so I looked at the clock & decided when I had to be out of the the house & doing errands... & then did it. I was preparing to host my small handspinning guild for our monthly meeting & had decided to have a temaki sushi party instead of the regular-type refreshments. So I hit a couple of asian groceries, finding some fun goodies for B as well (I'm always on the lookout for pokemon snacks & omake- little toys). C needed a bunch of sculpey for Sunday School, & I decided to hit the anime store, too, since I was out that way... I got home just before C did, ate a quick lunch, & realised that I'd better take a nap to get rid of a nagging sinus headache, since once B came home from school it would be a downhill run all the way to night-time. I was up to greet them home from school & visit over snack. B had taken his new Skitty pokemon stuffie to school in his belt pack, but I guess B's buddy JR kept annoying B to take Skitty out to play all day (B's pretty good about only taking the stuffies out when it's free or lunch time) so we all agreed that Skitty should stay home tomorrow. Then I took B to see his psychologist for a regular appointment while C got his boat trailer inspected for the trip home from the club in a few weeks (we store our boat in the garden all winter :). Dr. M hadn't seen B since school began he & was eager for the low-down. It was nice to have gotten a handle on the homework thing so that we could report progress on that front. He was also delighted, as predicted, by B's OT's new system to help teach B to self-regulate (using a car's engine as a metaphor). B had brought Skitty to introduce to Dr. M, so I left them to their meeting with B making the introductions. He was ticcing noisily during the time I was in there, but was considerably calmer when he came out. On the way home in the car B was explaining things to Skitty... we heard a siren & B told Skitty that that was a police car or fire engine & that the police's job is to "reinforce" the law :) He also went into a long explanation of the penal system (I suspect B's fave sitter, Ck, was the source of this info, since he did a criminal justice unit in high school) & ended-up blaming George Bush for the mess our economy is in (he did relate it to the penal system...). It was an illuminating monologue to overhear... I have no idea what Skitty made of it :)

I had told B I would sit & watch the second disc that came with the new Lucario pokemon movie after we got home, & even though I was pressed for time (getting ready for the temaki party) I really wanted to do it, so I put rice in the steamer & B & I settled in to watch. I'm really glad I did, too. It wasn't nearly as good as the usual pokemon movie short, with more violence than usual, & the characters' voices weren't the same! B was pretty upset at a couple parts, which we chatted about as they occurred, & when we talked about it again this morning I told him I was wondering if the story in english hadn't deviated a bit from the original japanese, since the actions sometimes didn't seem to fit the dialogue... We were both a bit shell-shocked after that bit of tv... it really reinforced my determination to watch tv with B whenever possible, particularly new videos. It took some processing to make us both feel better. Good thing the Lucario movie is so great, & also that B wasn't just sitting there so absorbed in the movie that he took it all in without thinking about it. B moved on to play the bionicle game (first time that day) while I prepared the rice & fillings for the temaki. C & B ordered a pizza to keep the kitchen from getting too crazy while I was cooking. After they ate B went quietly back to the computer to play while my spinning friends arrived.

We had a nice, relaxing time eating sushi together :) B pretty much kept to himself (he did say hi as people arrived), except for one time he went rushing through to show dad he has a new loose tooth :) When we finally got the the sitting & spinning part of the meeting B was just about ready for bed. He was back on the computer & C was trying to get him upstairs, but I could hear a note of panic in B's voice & went in where the computer was (just off the living room where we were spinning). He was at another dead end & couldn't figure out what to do next & was beginning to freak out, saying he'd never finish the game & he'd fail his mission... C & I quietly told B, over & over, that he was too tired to think of the solution, that he'd be fresher the next day, that he's hit a wall before & been able to "think outside the box" & find the solution, that Rufus was more important than the game & he wanted to go to bed... B was just this side of a meltdown, but he finally allowed himself to be led upstairs. C came down a little later & said that B was nearly asleep & doing ok. Relief. The cool thing was that I didn't feel terribly pressured by having these friends in the house while B was having trouble. I knew that they'd understand if I had to take care of him for a bit, & after B went upstairs to bed we settled in to our spinning & chatting once more. It was a very nice evening :)

This morning our sunny weather spell turned back to a rainy spell & B was still sleeping when it was time to get up. I managed to rouse him, & he got dressed ok, but dawdled something fierce over breakfast. He had a lot to talk about. He was fretting about the all-school meeting tomorrow (Friday) & the solutions we'd tried to dream-up with Cherie the other day. B was ranting about doing useless things & not understanding why anyone would require him to do them... I mentioned matter-of-factly that I thought this was one area where the Aspergers was not being a help. Sometimes I think it's useful to help B get a more global perspective on what's bothering him, & how his neuro-differences are part of the whole of his experiences. Part of the issue seems to be B's difficulty understanding the importance of doing certain, seemingly senseless, things at school, such as recording his homework in a log book (he knows what he has to do!) & sitting in on community meetings, which he finds boring & sensorily overwhelming. I explained that one aspect of these requirements have to do with altruism- doing things for the good of the group, & one part has to do with learning to do things that may not be relevant yet, but will be in the future. It's hard for a 10-year-old to understand how learning to write things down now will benefit him in college... & also hard for him to understand that by enduring these meetings he's showing his support of & interest in the larger community. I also understand that B has sensory issues that make it painful for him to sit in large groups of people. So we decided to propose to Cherie that he attend the weekly floor meetings (less kids, less noise) & try to cope by reading a book, doing a sudoku, or some sort of distraction that can allow him to be present, but that I just get him early from school once a month when they have the all-school meetings, which are just too big & noisy. Cherie was just fine with this compromise & B seems quite invested in it as well. I can handle picking him up an hour early once a month, so looks like we have a plan...

Catharsis...

OK, Kristina, here's some of the origami I folded using printouts of flowers :) (some of those on the edges are regular origami paper) These forms are called "tatos" & they are paper wrappers, known as つつむ ("tsutsumu"), used for wrapping money & notes. The book in the picture is the one I used to make them, by my favourite origami author Tomoko Fuse.

I had a mission this morning when B & I got to school... teach B's consultant teacher, Cherie, how to use the mac computers in their classroom. At B's school most of the computer equipment has been donated over the years, so they've been organised with most of the pc-types on the 2nd floor & all of the macs on the 3rd floor. B's teachers both moved upstairs with the 5th-graders, & neither Cherie nor Jen has worked with macs before. They have been frustrated by not knowing how you do certain things on the macs, like work with the dock, so they asked me to show them. The first thing I noticed was that every mac had at least 4 applications up & running- so I explained that you just can't click the little red button to close applications because it just closes the window, not the application, & if you have so many applications running simultaneously the computers become sluggish (the 3 in B's room are all oldish imacs). We worked with opening & closing documents & saving things to the networked files... then I discovered that no-one has been emptying the trash on any of the computers, so I showed her how to do that, too :) After about 1/2 hour Cherie was much more comfortable with how they worked. I'd been so caught-up in what we were doing I never saw B leave for OT & thought I'd missed kissing him goodbye, but when I left his classroom I found he & his OT sitting on a Twister mat in the big space. B was eating an apple :) B's OT had been wanting to show me a new programme they're starting with B to help him learn to self-regulate. There's a form that B fills out at different points throughout the day, indicating whether his "engine" is running high, just right, or low. After B checks his status, they discuss what he can do if he's high (do something active) or low (rest, have a snack)... They had been playing Twister because B had been running high :) It sounds like a very cool system & I'm particularly happy they've gotten him started with it because I think it'll be invaluable with the upcoming meds changes, to help B get a sense of any changes he feels. We brought a sheet home today so we can do the morning stuff at home, then he can continue filling it out at school.

When I came to get B this afternoon he was in Cherie's office wrestling with a computer file. When he saw me he put his head in his hands & moaned because he'd been so caught-up wrestling with the file he'd forgotton to do his homework... he was mad at himself for losing track of the time. He asked if he could still do the homework at school, & since it was not too involved I said ok. Cherie & I went out in the hall & she said he'd had a pretty good day, but there had been a loud altercation in the classroom that had set him on edge, & she suggested that I ask him about it (which I did on the way home). He had been a witness to one of the kids blowing-up at another, which had been upsetting, but we were both relieved that he hadn't been directly involved.

After snack B was ready to get back on the computer & play the bionicle game, so I sat & knitted some more on bathroom rug #2 (I want to have it done by next Monday, when the first one get washed :). B asked me to sit by him during a tense part of the game, but as soon as he found his way I was free to knit some more, & fold some of the origami in the pictured above. Also during the afternoon the UPS truck brought some pokemon stuff we'd been waiting for. B had earned a Skitty plushie last week & I had also ordered the newest pokemon movie "Lucario & the Mystery of Mew". B really wanted to watch it after dinner, so all 3 of us settled into the tv room after dinner (dad bugged out after a while to do some chores). "Lucario" was a very good movie, beautifully animated, & the story was about friendship & trust & forgiveness. I don't know what it is about these pokemon movies- I almost always end up crying at some point. This one was very sad, but uplifting, at the end & B & I had tears streaming down our faces, looking sheepishly at each other. The sadness was because of a sacrifice & loss at the end of the movie, but the loss resulted in 2 friends being reunited after a long time, so it was also hopeful, which was part of why we were crying. It was very cathartic for me, in light of recent events. For B... he started worrying that he might lose some of his pokemon guys or that they would die, so he was pretty distraught. C & I sat with him & told him that he took very good care of his pokemon, & that worrying about his friends was not a good way to be a friend, that it takes all of the enjoyment out of life & friendship. I told him that I worry about he & dad sometimes, but I don't get carried away with it because then I wouldn't enjoy my time with them nearly as much, if I was always afraid. This was one of those times when I can empathise with B's fears so much... & really see how he's growing up & having some un-kid-like concerns. Sharing the practical ways that we cope with these fears really helps B, I think. (It teaches me stuff I never knew about C, too :)

He finally calmed down enough to be tucked into bed for story. He started out with the whole gang of stuffies under the covers with him, but then was worried about them falling out of bed when he rolled over & their being lonely on the floor, so he decided to sleep with just Skitty & Mudkip... the rest crowding next to his pillow in relative safety :)

The bionicle game...

B is officially obsessed with the new online bionicle game at the lego site, which he has dubbed "VNOG" (Voya Nui Online Game). When he's at home, it's about all he wants to do. This would normally be pretty annoying except that B's obsession with this game is not manifesting itself the way his past obsessions have... which is interesting. Most games that B gets into get harder & harder in such a way that he's alternately frustrated to tears & then elated, followed rapidly by frustration. He usually needs one of us to sit with him during the frustrating bits, giving suggestions & holding his hand. Eventually both C & I burn out & B finally gives it all up, at least for a while. He's come back to some of these games when he's older & done better, but sometimes by then they're too easy... sigh.

This game, though, seems to be challenging B just enough to be interesting but not enough to be horribly frustrating. He's hit a seeming dead-end a couple of times, & needed some help from us, but not of the hand-holding type. Sunday morning on the way to church B was describing the latest frustration (being hit by hostile critters from all sides), & I asked him if there was someplace where he could wedge himself into a corner & take them on one at a time. He thought about it & said he thought there was. When he got back to the game after lunch he tried my suggestion & it worked (he kept saying "mom, you are brilliant!" which was gratifying :). Other than the relative lack of frustration, the other difference we see in B's behaviour while playing this game is that, although he really does want to play it all the time, he is good-natured about being asked to stop for a bit & do something else. We're not comfortable with him being on the computer constantly, but sometimes it's a real battle to get him to release from a game once he's started playing. There's a timer next to the computer & in the past he's been allowed 3/ 25-minute sessions (represented by 3 quarters) a day, with the possibility of earning more quarters by riding his bike, helping mow the lawn, & the like. Having it set up very strictly has helped B transition between computer time & non-computer time without getting upset about having to stop. Over the summer B wasn't playing on the computer as much & this system kind of fell away. I had him set the timer for 30 minutes of computer time while playing over the weekend & he was pretty good about transitioning, but he's also been doing nearly as well when we haven't had him use the timer. C & I were talking about B & the game last evening & we are both pretty impressed by how well he's managing this obsession. It will be interesting to see what happens when he finishes the game (whenever that will be... it seems endless).

School is still being fine-tuned in many ways. Last Friday there was a Mudkip emergency (Mudkip being the pokemon stuffie that had come to school in B's pocket to be his companion that day). Mudkip fell out of B's pocket & went missing for a while, but B finally found him in one of his safe places (a broom closet... not sure I want to ask why he's hanging out in a broom closet...). I am still trying to figure out just how Mudkip managed to fall out, since he fit pretty snugly in B's pocket, but it seemed obvious that we needed a new system. So I suggested that B go back to wearing a belt pack. For a lot of last year B wore Rufus in a belt pack at school & just took him out at free time. I had been concerned that if B held Rufus under his armpit all day (his usualy place), he might at some point need 2 hands to do something & set Rufe down somewhere & leave him, with hysteria resulting, so B agreed that the belt pack was a good idea. Today we found a newer one & B put Plussel & Minun (more of the pokemon stuffie gang) in it, plus some pokemon cards to trade with his friends. That he was still wearing it when I picked him up was a good sign :)

When we got to school B & I sat down with Cherie to continue brainstorming ideas to help B with the transition from Spanish class to Music on Tuesdays & Thursdays (not much progress there). Cherie also mentioned that the all-floor meetings on Friday afternoons are not going well for B, since the noise & crowd of people seem to be overwhelming him. B was all for my picking him up early on Fridays... I was more interested in finding a distraction that might allow him to be there & peripherally hear what's going on, like reading a book. B became rather grumpy at this idea, so Cherie said they'd keep working on it.

I had a quiet day while B was at school. Did laundry, printed some full-sized pictures of garden flowers to use as origami paper, watched a movie while finishing a knitted rug for the bathroom. I'm feel like I'm going to be processing my father's death for a while, so I'm taking it easy for a bit. One thing that I'm excited about is having gotten a date to do a service at church... I've been thinking all summer that I'd like to speak about autism advocacy & our personal journey with B in a sermon at church (we have a lay-led service once a month), & I finally spoke to the friend who schedules the lay-led services about getting a date. She was very happy that I wanted to speak & gave me November 26th, so I'm officially on the calendar. I thought about sermon titles all day & I've tentatively settled on "Greetings from Autismland: myths & realities of raising an autistic child". I hope you don't mind my borrowing "Autismland", Kristina! It's a lot more descriptive than "Greetings from the New Republic"... :) I have a feeling that this sermon is practically going to write itself... I have so much that I want to say!

...and dealing with death...

B & I decided to celebrate Saturday by downloading another episode of Kim Possible, & watched it after breakfast. I love catching glimpses of B's face as he's watching. The delight is infectious :) We both go "oooh" when Rufus does something cute :) It so much fun to share this with him. C had to work this morning so we were on our own until lunchtime.

B was on the computer with his latest obsession, the new lego bionicle online game, when the phone rang. It was my friend Roo, with the news that Didi passed away early this morning, peacefully in her sleep. Roo was still in shock, although we agreed it was a blessing for her to go so quickly. Didi had only been in the hospice centre for a day & a half, & just last Monday she had found the strength to go hear the Dalai Lama speak (!). Roo informed me that I am now officially her oldest (in terms of length of time :) friend, & I told her I'd try to live up to it :) We reminisced for a bit & I encouraged her to be very kind to herself, since there's a huge hole in her life to fill. She rang off after promising to let me know when the memorial service would be.

B finished his computer session not long after & we sat & looked at pictures from when I worked at camp in the early & mid-80's. He didn't seem terribly interested in pictures of his younger, mom :) He did want to see pictures of Didi & Roo, so we found them. Then he wanted to look at this year's photo album (which was last updated in June) to look at the silly caption stickers I'd put on some of the pictures. This inspired me to print out the pictures from the summer so that I can get them into the album too (& embellish them with more silly stickers :). We had lunch & dad arrived home while we were putting out our usual message to our japanese teacher, before lesson. (I've made mini-cards of the hiragana & katakana alphabets, & we compose a message for Tomoko every week, much to her amusement. B has become really fluent at "writing" japanese this way.) When Tomoko arrived we had her look at the letter B composed, in both japanese & english, for his new penpal in Japan. She corrected one preposition, but was delighted by what B had written. We worked on using verbs & adjectives in sentences for a bit (Tomoko makes wonderful worksheets for us, using humour to "hook" B into the exercise :), then he was free to go swimming with dad while she & I delved more deeply into sentence structure. The goal is for us to be conversational by the time we go to Japan next June... fingers crossed! :)

The rest of the afternoon afternoon passed pleasantly & quietly, with me printing out what seemed like a million photos for the album & B playing the bionicle game. C made us a yummy dinner & we listened to Prairie Home Companion while we ate. After dinner the phone rang & it was my mom. She wanted me to know that my brother had called to tell her that our father had passed away this morning, having been ill for some weeks. On the heels of Didi's death I was caught off-guard by this news. On one hand, I feel relief. He'll never try to see B now, nor do I have to worry about him trying to contact me ever again. On the other hand, there's a certain amount of "regret for what might have been", as C put it, not that I had any illusions about ever having a relationship with him. It's more regret that his life experiences twisted him so badly, & sadness for how badly he twisted our family, too. It's all very confusing. C & I decided that we should tell B about my father's death, so he'll understand if we happen to talk about him. B knows that my father was "a bad daddy" to me & that's why he's never met him, & he has shown occasional curiosity about him, so I think it's important to at least let him know, matter-of-factly, that he's gone. My mother told me that there won't be a memorial service, so I don't even have to fret about my decision not to go... and I can put my energy & time into being at Didi's service to support Roo & deal with my own grief over her loss.

Yet another strange & occasionally beautiful day in, as Kristina would say, Autismland...

Talking about death...

This morning over breakfast I told B that our dear friend Roo is losing her best friend, Didi, to cancer. Roo (not her real name, but what I've called her for over 20 years :) & I became friends in 1983 when we spent the summer working at the same summer camp. In fact, Didi, whom she's known since high school, also worked at camp that summer, so I've known her as long as I've known Roo, but Roo & I just hit it off that summer & have been good friends ever since. There's something pretty special about a friend that you've known longer than your husband... & Roo has been with me through all my ups & downs for nearly half my life (although we've never lived in the same town :). We visit at least twice a year these days & talk on the phone or email in between visits. Since Didi was diagnosed with breast cancer 2 years ago I've tried to be one of Roo's supports as she's supported Didi. Now Didi is in hospice care & so I wanted B to know what was happening with Roo, since she's an important part of his life, too, & that I will probably be going to be with her when Didi dies.

B's closest experience with death so far was when we lost grampie, my stepfather, 4 1/2 years ago. When grampie collapsed with a heart attack & was hospitalised while he & my mom were in Florida, we couldn't be with them but we were in phone contact with mom & my stepbrothers & sisters. C, being a physician, had a very good idea from what they were relaying to us about his condition that he would never recover, so we were able to prepare B. What amazed me about B's reaction to the news that grampie was dying was that he was more upset on behalf of grammie than for himself. He kept moaning "poor grammie, poor grammie" over & over until he fell asleep, the evening we told him (he was 6 then). It was hard to lose grampie, but I was so glad that B was old enough when grampie died that he'd remember him.

This morning B was sad for Roo, & sad for my sadness. He asked me if Didi had ever played Star Trek at camp (one of our goofy, down-time activities at camp, where we all took on ST characters & communicated over the intercom system in character :), which is one of B's favourite camp stories, & I told him she'd been Mr. Spock (his favourite character). This led me to more happy memories of Didi to share with B. last year Roo decided to ask all of her friends everywhere to ask their friends to send birthday cards to Didi, to cheer her up as she coped with pain & chemo. It was at the end of December & Roo told me later that they sat together on New Years Eve & looked through hundreds of cards from all over the country & the world. Two summers ago, when Didi was on break from her first round of chemotherapy, she & Roo took off for Hawaii & had a memorable time. When Roo came back she told me about the luau they had gone to & how the purple poi had been too weird for her. When Roo next visited us we made sure to find some blue potatoes & serve them to her mashed, so she'd think they were poi :) B still giggles gleefully about our poi prank... I think that B wanted to hear about Didi because she really has touched his life, even though he's never met her. It was comforting to me to talk about her, too. Our chat made us nearly late for school, but it was good to know that he'll understand when I have to be away with Roo, & that it won't take him by surprise.

While B was at school I was messing around with iTunes & discovered that I can download episodes of Kim Possible for us to watch. I got myself signed-in (finally) & made the attempt... which actually worked! KP is one of B's & my favourite shows (& the reason Rufus the naked mole rat is part of our lives), but since we don't have cable tv we've had to rely on grammie taping it for us & the occasional dvd collections. So there are holes in our KP repertoire, although B has a bunch of the novalisations of the episodes (a blatant & successful attempt to get him reading independantly a couple of years ago :). I ended-up downloading 2 episodes (at $1.99 each, which I thought wasn't too bad) before I picked up B from school. I knew he'd be psyched. Before we could come home & enjoy KP, though, the "great bionicle search" had to take place...

I have never considered myself one of those parents who will pursue kid-fad items till they drop... (KP doesn't count because we both like her & because it's taken me a few years' wait to see some of these episodes!), but today I found myself traveling to not one, but two McDonalds' looking for the new bionicle happy meal. Go fig. It was partly driven by advertising at the lego site & partly by another parent at school getting B all revved-up about them (she was taking her kids on the same hunt after school). Luckily, she also informed us that you don't actually have to buy the Happy Meal to buy the toy, which was a relief since B is now vegetarian & there's no way he was eating any chicken nuggets or burgers, even for a bionicle :) The first (& closest, of course) McD's to school had never heard of the bionicle promo & was still handing out Mario toys... So we learned that "at participating McDonald's" were not empty words. Sigh. We went a bit farther afield & struck gold, although B was disappointed that they began the promotion by handing out the bad guys, which he's heartily sick of... but not so sick that he didn't want the toy... so we got fries & drinks & the toy & toddled on home to watch KP. B had informed me yesterday that this is an 8-week promotion (!) so I told him this afternoon that the first one is a freebie, but if he wants the next ones he'lll have to earn them with his homework chart, & he was amenable to this. No such thing as a free bionicle, kid...

Definitely a "from the sublime to the ridiculous" type of day...

"Switching gears"...

Our end-of-season garden is still blooming :)

B had a pretty good day at school, although I was surprised to hear that he didn't participate in music class this afternoon. He'd had such a good time on Tuesday... When I asked Cherie why, she said she didn't really know. On the way home in the car I casually asked him how music had gone & he said that there was no "Theatre of the Absurd" (bummer) & that he didn't sing with the rest of the kids. When I asked him why, he said "I just couldn't switch gears". That brought me up short. So I asked him what he'd been doing right before music & he said they'd been having a break... Well, that sounded reasonable to me, actually. It's hard to knuckle back down to work when you've been having a break. But mostly, I was struck by B's "switching gears" remark, because it was a very good description of the problem B sometimes has with transitions. The thing is, this difficulty can appear to be a willful lack of co-operation, but it really isn't. So tomorrow I'm planning to make sure Cherie knows what B said, & that perhaps B's teachers will be able to find ways to ease him into transitions more easily (or at least let the music & other adjunct teachers know that B has trouble "switching gears"). Maybe they can set up a signal or code words (B loves those) to help him let them know what's going on, too.

The main topic of conversation on the way home was B's first attempt to do some pokemon card trading with friends at school. He was very excited by the prospect, & told me earnestly last evening (as I was helping him organise his cards) that not only might he get some new cards, but he might make some new friends :) He had been discussing pokemon cards with 2 friends at school, one he's known for quite some time & one who's only recently showed-up on B's radar. The newer friend has a card B covets, so he was trying to figure out which cards new friend might want & which cards he was willing to part with. This was the main thing on my mind, & C's too, so we counselled him to be conservative for this first trading session. On the way home, B reported that he didn't have anything that new friend was interest in trading for the coveted card, but he did get another great card for 2 cards that B has loads of. He was feeling really good about it & ready to start planning the next round of trading :) This is pretty sophisticated socialising, in my opinion, & I was glad B's first foray went so well. Between encouraging B to learn to read japanese & helping him to make friends, B's interest in pokemon has turned out to be a wonderful thing!

Mommy glows...

Yes, I'm proud of my kid, but that's not exactly why I'm glowing today. Today I had my first ever procedure requiring an injection of radioactive dye- & hopefully my last... Not that it was terrible or anything. And it was for a good cause (IMO :). It was to help sort out the nature of the arthritis that I've had for 30 years, which has gotten steadily worse over the past year & caused me to lose partial use of my right hand last spring. The test was done in 2 phases, 2 1/2 hours apart, & the whole thing was made even more exciting by C's car being in for its yearly inspection & my having a chiropracter's appointment in the middle of it all... In spite of some discomfort, though, it all went well & I was feeling quite able to go pick B up from school after we retrieved C's car. My doctor will have the report in a couple of days & he said he'd call with a plan of action soon after. It's lovely to have it all over (B was disappointed that we haven't a geiger counter to check me out :) & even lovelier to think I might get some relief soon from the arthritis pain & swelling.

B had another good day at school. He found the pokemon cards he made last year at school with Cherie, that they used to keep track of the real cards B could earn by turning-in tacks & pushpins before hurting himself with them. So if he happens to run out of gum again or is tempted to de-stress by shredding his fingers, he'll have good incentive not to... After we got home from school & had snack, he & dad played with his Alpha Team legos, which B retrieved from the basement yesterday on a whim. It's fun to see him revisit his old legos & he has a grand time updating their stories. After that, he did his homework pretty cheerfully, although he said that he felt bad about asking me to scribe part of it, but I assured him that his teachers were fine with it & I don't mind doing it... I'm really pleased that using a charting system has been making such a big difference in B's tolerance of homework. Dad went outside to work in the garden while B did homework. When B joined him afterward he unfortunately took one of the Alpha Team legos outside & lost part of it (he'd forgotten that we discourage taking legos outside for just this reason...) & was on the edge of meltdown because he felt like an idiot for taking it outside. I vividly remember feeling this way when I was a kid... judgement takes a while to kick-in. I used a combination of talking, joshing, & tickling (having cold hands helped, too) & managed to divert him from a meltdown. We looked up the word for "cold" in japanese & used it to say "mom has cold hands!" (& also "Rufus has a cold butt" :). While we were chatting I mentioned that we were having his new favourite, bean loaf, for dinner... & B informed me that it gives him bad thoughts now because the kidney beans are red. Sigh. Red seems to be associated with blood & other scary things these days, & although I've been able to keep him wearing his partly red, tie-dyed t-shirt (nectarines! cherries!) he will no longer wear his red shorts... Big sigh. I warned C about the new turn of events before he made dinner, & he offered B some soup instead.

While we were eating C played an old PDQ Bach cd (1712 Overture) that B had not yet heard. He cued it to "Einstein on the Fritz", which is a hilarious take-off on Philip Glass's "Einstein on the Beach", with some "Well-tempered Clavier" & "Koyaanisqatsi" thrown in for good measure. B thought it was hysterical. The next track, a ballet inspired by the Crimea, was even better by B's standards, including slide-whistle, fog horn, & something called a "wind-breaker" in the instrumentation. B was so inspired by it all that, after he was done eating, he rummaged through the instrument basket & pulled out some of my weirder purchases (plus a slide-whistle) to add to the cacaphony. It was really funny, & fun to see him all fired up by music again. He found his recorder & I took a photo of C helping him to get his fingers on it correctly. I have a wonderful series of pictures from when B was about 2 & discovered the recorder for the first time. C was down on the floor with him & encouraging him to blow into the recorder. Little B's face was priceless as he discovered he could make noises with it, too... It was fun to remember B's first encounter with the recorder as they rediscovered it this evening :)

"He just came to life..."

The above quote is from B's music teacher, who was really excited to tell me about B's great participation during class today. This year B has music twice weekly (hooray!) & they have started the year with an exercise that Mr. Joe, his teacher, calls "Theatre of the Absurd". He's doing various improv exercises with the kids with hilarious results. B had not been enjoying music class very much- transition issues?- & had not been participating, which surprised me because he has really enjoyed music since he came to Cobblestone School in first grade. I guess today was breakthrough day... Mr. Joe tapped B for some of the improv stuff & B had everyone in stitches. As B described it, first he was not supposed to talk, with another student cajoling him to (no physical contact allowed) & then he was supposed to talk non-stop with the student trying to get him to shut up. B loved it & got the giggles when describing the other student's efforts to get him to talk, & his non-stop babbling as well. I just couldn't imagine talking non-stop & asked B how he did it. He said he just talked... & then I remembered how he loves to give me the minute details of each & every lego he designs, with all the back-story of their "lives" before he made them, & I understood how he pulled the talking thing off :) B said that he then pretended to be a rabbit & another kid chased him around as he hopped all over. Giggles again. I was delighted. B has really enjoyed theatre & music at school, & also shown a great talent for both. He has no concept of stage fright, which I'm sure contributes to his enjoyment of being on stage. Mr. Joe was really excited that B "came to life" during class. So excited that he had B's consultant teacher, Cherie, dragged out of a meeting so she could watch him :) B's class will be doing a musical play based on "The Velveteen Rabbit" this fall & I suspect that these exercises are preparation for getting to work on the play. Considering that B has his very own "velveteen rabbit" in the form of Rufus (& it's a long-time favourite story of ours), I'm really looking forward to seeing B's involvement in the play.

B's speech therapist called me today, too, & I was so glad to discover that it's the same person he's had for the past 2 years. Mary has been a wonderful member of the team & really knows B well. She campaigned successfully at his CSE last spring to have his speech hours increased from 2x 30 minutes/week to 5x 30 minutes, to help him cope with the transition to fifth grade. She's really excited because she's convinced that now she'll have the time to really make a difference with B's pragmatic language. She's arranged to come in at a different time each day, so that she can help him with a variety of activities. I was glad that most days she's with him in the afternoon, since that's when he has the most trouble coping. Such a relief that he's not having to get used to a new therapist!

We officially started a charting system for B's homework, so that he can start earning stickers toward little treats for each day he completes his homework. Today's was math & it was kind of neat- he had to solve a partially written logic problem, then find a final condition to narrow down the answers to one. I love how his school is teaching him how to reason, not just how to calculate...

The only unhappy part of the day was discovering that B had run out of gum today (he did remember to tell me after school) & so he ripped-up his fingers with a push-pin to relieve the stress in the absence of gum... I bandaged 5 of his fingers with healing salve before bedtime. It made me so sad I got teary & I tried to impress upon him that he should tell Cherie if he's feeling like he needs to do that. B said he would... I hope he does. The truth is, there is so much coming at my kid during a school day it's a wonder he remembers anything. I will also make sure Cherie knows what happened & maybe we'll re-instate our system from the end of last year, where B got a pokemon card for every push-pin he turned in... keeping his fingers safe it worth any number of pokemon cards, in my opinion!

Red frog a-leaping...

After our wild week it was nice to have a fairly relaxing weekend. B's & my only activity outside the house on Sunday was church, which B tolerated pretty well (Sunday School has begun to meet again, so he's got something to look forward to now). C went sailing after teaching Sunday School, & I scooped B up after my class let out (I have Sr. High & C has the preschoolers) & we went home. I think B must've OD'd on the goldfish snack his class had, because he was not hungry for lunch. He played on the computer while I lay down "for a minute" on the sofa in the same room... & woke up 1/2 hour later! B was still happily playing, but I suggested that it was time to eat, so we did. After lunch he wanted to watch some Kratts' Creatures, so I said he could watch 2 episodes & then we'd play a game. I had purchased the Fruits Basket card game a few weeks ago, & although B took a look at the cards & the rules, we hadn't played yet. It's a somewhat complicated game so we played it semi-co-operatively & we both managed to win (it is a friendly game :). C came home from sailing about the time we finished, & soon we were on the way to dinner. B, however, was not hungry at all for dinner- maybe his tummy was upset? He wasn't gassy or running to the bathroom... but he did sit on the sofa while we ate in a somewhat unhappy mood. I checked-in with him half-way through the meal & that seemed to cheer him up (which was a relief because it was difficult to tell if he was heading for a meltdown or not...). After dinner he & dad went to play legos. I went up after a while & decided to take over for C because he wanted to get B's room tidied up a bit (it was becoming difficult to walk through because of all the legos). Playing legos with B has always been C's area... I don't have a lot of patience with the "...& then you say this..." type of play, which is what B really enjoys. He sets-up elabourate scenarios with his lego "rangers" & bad guys & then he & dad act them out, with lots of exploding & colliding of vehicles. So, last evening I grabbed the red frog "zord" & started haiving him hop repeatedly on each bad guy B sent his way, until they were hopped into submission. B was laughing so hard he could barely breathe :) The red frog managed to defeat every single bad guy, including the head honcho "Lord Venonite", who finally scurried away when my frog hopped his eyes off & had to be repaired :) It was an awful lot of fun, although I suspect that B was being very tolerant of my red frog's antics because I was new to it all. All that bad-guy bashing was rather cathartic, & relieved a lot of stress. Who'd have guessed?

B slept right up to the alarm again this morning. He looked so sweet still asleep, when I went to wake him up. He was a bit muzzy, but managed to get dressed & get down to breakfast without too much groaning. I had a proposal for him over breakfast concerning homework. I had been trying to figure out just when B was going to find time to write his first letter to his new penpal in Japan, Seiji (the son of a friend of our japanese teacher), particularly with homework after school. So I asked him if he thought it would be a good idea if I asked his teacher if he could write the letter as homework today. He was ok with the idea, so I asked & Jen said that would be fine. She said he could share the letter with his class tomorrow.

When I picked B up from school he was in pretty good form. He was in his classroom when I arrived, which was unusual, since most days he's too burnt out to be in there by that time of day. It was a good sign. Cherie, his consultant teacher, said he'd had a good day. He's been asked to help out with reshelving books in the 3rd-floor library & Cherie thinks that it'll be a fun job for him. I'm psyched because he'll become familiar with the library & maybe find some new books to read. On the way home I proposed to B that he watch 2 episodes of Kratts' Creatures after snack & then we would work on his letter/homework. He said ok, but when it came time he was really keen to start the next Artemis Fowl book (having finished book 3 at school). Who am I to complain that my kid wants to read? So I gave him 1/2 hour to get started, then it would be time to write. When we finally sat down with the laptop to write to Seiji, I told him that if he finished in good time we'd go our for japanese for dinner, since dad had a meeting at work. That sweetened the pot considerably, & he began with a good will :) B wrote the first part of the letter in japanese-hiragana (with a few katakana words, like "pokemon", thrown in), mostly saying hi, his name, talking about how he likes pokemon, & asking if Seiji likes pokemon movies. Then he continued in english, talking about learning japanese & about Rufus. When Tomoko spoke to his mom aboutbeing penpals, she requested that B write some in english so that Seiji would have more practise. I think it's a great idea to practise both languages, & Tomoko pointed out that both boys will be able to say more in their native languages, too. I think B did a great job & it'll be really exciting to get a letter back from Japan.

We had a nice japanese dinner together, mostly discussing Artemis Fowl. I really hope we can find another series that captures his imagination as well as Artemis has, when he's done with them...

In the shadow of dead turkeys...

It was lovely to sleep in this morning... B even managed to do the opposite & wake up at 6:15, which he's been too tired to do all week, so it felt like he was meeting his needs as well :) C went to work early to do paperwork & was home in time for breakfast, which is his usual Saturday routine (unless he's on call for the weekend...). As we all sat together & had a nice family breakfast, C said that he'd thought of something important to discuss: Thanksgiving.

Our Thanksgiving custom is to go to Pittsburgh & be with C's parents one year, & then the alternate year they visit us. When my stepfather was alive my mom had everyone over for dinner- & I mean everyone. Sometimes 25-30 people... The year before he passed away my mom found herself overwhelmed by life & asked me, the day before, to host (luckily, not the whole family, though because we just don't have the room). They cooked the turkey & brought it over, & we had 13 for dinner. With me being veggie it was a very nice thing to have them cook the bird- something I hadn't done in years. Four years ago, after my stepfather passed away, I found myself cooking a turkey for the first time in forever, & we managed... just barely. I've done it twice now, which isn't really enough times to become an expert, but we don't want to disappoint anyone (including my husband) looking forward to the traditional meal, so we muddle through.

This year, there's a new spanner in the works. Not only has B forsaken eating meat, but he can't abide being in the room with anyone who is eating meat, or to see pictures of meat, or to hear someone talk about eating meat... you get the picture. It is not at all difficult to accomodate him at home (although C has to plan his lunch-making carefully, since he does make lunchmeat sandwiches for himself) but out in public it's a different story. At the party following the Brown Jug boat race on Labour Day, B noticed that there was a crockpot of meatballs next to the pizza that he'd wanted, & lost interest in the pizza completely. It's the same at any potluck meal, so we've gotten in the habit of loading up his plate for him so he won't refuse to eat entirely. Sometimes seeing meat can lead to tremendous tics or elabourate rituals of tapping & thumping, that seem to exorcise the bad feelings he has about eating animals.

So, at breakfast C wanted us to discuss the matter of Thanksgiving dinner & how we would accomodate B's antipathy to edible animal carcasses... The first idea was to have an alternative meal, such as lasagna... but unfortunately B can't abide to be in the same room with lasagna either. I'd forgotten that he has a similar reaction to lasagna as to meat, probably because it's been months since we've had it (because of B's reaction...). This morning he did finally explain the problem with lasagna to us, though, which was very helpful. There was an aide in his class during 3rd grade that was one of his first OCD triggers (she was a lovely woman, but she happened to arrive about the time B's OCD did...) & many things associated with her, flowery perfume & shiny jackets among them, will trigger thoughts & tics for B. He told us today that she had said the word "lasagna" after they had watched the "Garfield" movie in spanish at school, & ever since then he's been triggered by lasagna. To the way my mind works, that's quite a stretch, but it really is illuminating to discover how B's mind works... & right now we simply have to accomodate his difficulties with these triggers, because there's no reasoning with them nor can you fight them. Soooo, lasagna was out for Thanksgiving. Then I suggested perhaps a quorn roast (veggie meat substitute) or tofurkey, but C thought that his parents wouldn't enjoy these & B won't eat tofu if it's shaped like meat... I then suggested a big curry meal with lots of dishes, but B didn't like the idea of that either & started to get kind of pissy... (in retrospect, maybe it's because curry has such a strong & pervasive smell). By this time B was heading toward a meltdown & we had a japanese lesson in 45 minutes, so I was feeling rather desperate. C saved the day by having Rufus begin to "fart" in B's face, distracting him with silliness. I chimed in & next thing we knew he was smiling & going to brush his teeth. C went up with B to play legos & I felt so grateful to my husband, hearing B's giggles as they continued the silliness while playing with B's lego creations. It was a joy to listen to happy sounds rather than to be riding out another meltdown...

Japanese lesson went very well. We are learning verbs now, & B can read the lessons (written in hiragana) quite fluently. He has been pretending to be a dog during some lessons, so we call him "Burendan taro" which kind of means "Brendan boy", the taro being a common dog-name. So we added his dogness to the lesson as needed. Even Rufus was speaking japanese today :) After some hard work we had a refreshing treat: we shared some imported-to-america ramune (fizzy pop) with Tomoko. She was amazed by how you open the bottle, mostly because in Japan, you buy the ramune & the shopkeeper opens it for you with a wooden device. She had never in her life opened her own ramune! I am hoping to have the wherewithal this week to practice some new sentences to use with B, adding them to our conversational repertoire. It's really the speaking of the japanese that plants it firmly in my brain, plus I often use japanese conversation to help distract B from thoughts & tics.

After a somewhat busy day, B fell to sleep quickly as I read to him. C & I sat down to discuss our day, & the Thanksgiving discussion, & came to the conclusion that the best way to cope with the lack of turkey this Thanskgiving would be to have all the accompaniments... but leave out the turkey. We can have some fried tofu or beanloaf for anyone feeling protein-deprived. C even suggested that he take his parents out to lunch that day & tell them to get their fill of meat :) We like to invite friends for holiday meals, & we know that our true friends will understand our perhaps odd Thanksgiving provisions this year. The main thing for me is that B feel comfortable sharing this family holiday with us.

The honeymoon is over...

When I arrived at school yesterday to pick B up I found him with Cherie, his consultant teacher, & his music teacher, waiting for me to arrive. I could tell B was barely holding it together. While I spoke to Cherie, B's music teacher took him aside & spoke to him quietly, & I saw them high-five at the end of their chat, which seemed to bode well... Cherie explained that B had had a good morning, but as the afternoon wore on B had more & more difficulty with tics & feeling "unsafe". Things came to a head during music time (although I guess he didn't do well during Spanish lesson, right before music, either) & his tics became disruptive. Cherie had been in a meeting while the kids were in music, so they called her out to help B, but by the time she got there he had been approached by too many people who didn't know what to do & he was really freaked out. Since it was really close to dismissal time Cherie decided to wait it out rather than call me (I usually leave the house at 2:15 to go get him, so she probably would not have reached me before I left home anyway). After B finshed talking to his music teacher, he came over & buried his head in my shoulder, pushing hard (in a sort of controlled head-bang), so I knew he was feeling overwhelmed. I helped him get his things from his locker, then we headed for the stairs, but B was still really upset & overwhelmed & whacked his head against a locker on the way to the door, then swore going down the stairs. By the time we got to the car he was screaming. I got him settled in the car & we started home. The screaming stopped about half-way home. He said he was upset because he felt that talking about what was triggering his tics with Cherie had made them worse, & I explained to him that understanding what triggers him is the only way we can try to modify things, to minimise ticcing. I was worried about getting him out of the car & into the house, because he seemed on the edge of a meltdown, so when B was quiet enough to hear me I told him that what I would really like to do when we got home was to have a snack & watch a pokemon movie. I told him I'd bought ramune for snack & that diverted him very nicely. We discovered ramune ("rah-moo-neh", a kind of japanese soda) just recently & it really is fun. There's a marble stuck below the bottle's opening that has to be dislodged in order to drink the soda (it's stuck inside the bottle & can't come out) with a special device included with it. The marble makes the soda fizzier, & B likes it because he can't guzzle it but has to sip & savour it (thanks to the marble). Plus, the whole bottle is only 70 calories, a nice plus. So, B was happy to go inside & have ramune & then watch "Pokemon: Heroes" with me. After the movie I asked him what had happened at school that made him feel so overwhelmed. He explained that a kid in his class has begun to trigger tics (a friend, actually... sigh) & after lunch he & Cherie had tried to sort-out how to help B cope with the kid's presence. B said that talking about it made him feel more like ticcing, so when they all sat down for music class B had tried to sit where he couldn't see him, but somebody complained that B was in their way & he had to move. B ended up in a fetal position for most of the class, ticcing more & more loudly. The one-on-one aide for another child tried to help B, but she really had no idea of what to do (& what not to do) & just made B feel worse. He ended-up around the corner, finding refuge among some tables that no-one was using.

During the evening, when B seemed calm, C & I queried B as to how he thought things could be better, how best to help him cope. B said that he needs to find a safe place on his new floor at school. Last year, on the 2nd floor, the special ed. resource room had a "cosy corner" with beanbag chairs & books that was behind a short bookcase, so that it felt private. This year there's no equivalent place for B to go when he's overwhelmed. Plus, they are still sorting-out how to manage all of the kids with special needs in the 5th & 6th grade classrooms, & how to alert Cherie when she's needed because the rooms are across the hall from each other & not easily accessible for emergency situations.

B stayed fairly calm all that afternoon, although I noticed that he was ticcing a lot, a different vocalisation than his usual tics, even when he watches tv, & when I ask him if he's ok (or being triggered) he looks at me as though I'm nuts, so I don't think he's even aware of some of these tics... (Cherie told me the same story this morning when we spoke, & that he appears completely unaware of doing it when she asks if he's ok...). He had some trouble falling asleep, but C & I tag-teamed reading & sitting with him & he finally drifted off. Afterward, we tried to brainstorm ideas to consider at school, particularly for finding safe spaces. I was feeling pretty upset & worried that he wasn't going to be able to cope with all the new stresses of 5th grade. We are trying very hard to avoid having to get B a one-on-one aide, because it's about the only thing that he's told us adamantly he'd hate. (He's fine with OT & tolerates speech...) I was also worried about how much accomodation we could reasonably expect from school, especially if he's disrupting things (no matter how inadvertantly). It was scary seeing B so upset that he was screaming, & worrying about how to bring him back down... C wrote down some ideas for me to share with Cherie this morning...

B slept right up to the alarm again this morning- a pattern that I find worrying. He seems to really need the time before his official wake-up for down-time & getting-himself-together-time, & I wonder if the stress of the new challenges of this school year are exhausting him. He was pretty cheerful during breakfast & not at all adverse to going to school, which was a great blessing. We decided to take Paula (director of B's school & good friend) a bottle of ramune, since we'd told her all about it last week, & that made B psyched to go to school... When we got there Cherie & I sat down to compare notes. I told her B's take on yesterday's events & requested that, if at all possible, if B's having trouble, no other adult get involved but her. She explained the communication problem (how to call her when needed without disrupting classes) & told me that they're working on a solution, especially because B's not the only one that has this need. I also explained the safe space issue & she said she'd actively work on this one, too. I was kind of weepy while we talked, & embarassed about it. Cherie was very sweet about it, though. Sometimes I feel scared that, if they can't work things out for B at this school, we have no other viable choices for him. At the same time, I don't want my kid stressing this school beyond their ability to cope. B came in while we were talking & he & Cherie talked about possible safe spaces. She also mentioned that one of the other kids (another buddy of B's) was going to be making brownies that morning & would he like to help. Would he!?! :) I left feeling a bit better & spent some time hanging out with my friend Amy, one of the 2nd grade teachers, & keeping an eye on her kids when she needed to leave the room. This helped a lot to get me grounded again.

I had a meeting at church today & a lunch engagement with a friend (which was somewhat derailed by her purse being snatched on the way over to my house, but a visit from the police & many phone calls to cancel credit cards didn't stop us from enjoying a home-cooked japanese meal at my dining-room table), which was good because I wasn't worrying all day about how B was doing. When I got to school there was no sign of turmoil- nor of my kid :) Cherie found me first & told me that B was in Paula's office, hanging-out, so we had a chance to talk about his day. He'd had a few "tic attacks" but for the most part was having a much better day (the brownies & giving Paula the ramune really helped :). Cherie said that she's asked the special ed. co-ordinator for school to do an observation this coming Monday to see what she might be able to suggest to help B cope with his new environment. Paula, too, will be involved in the meeting that the teachers'll have after the observation, to share her perspectives & ideas as well. Cherie said that Paula has offered her office (which is right across the hall from his classroom) as a safe space for B when she's there, so he'll have a quiet place to read or do his work when overwhelmed by noise or intrusive thoughts. When I went to find B in Paula's office, he was playing with the cool mechanism that opens her umbrella :). She said they were just hanging-out & chatting (there was another classmate in there, too) & she reiterated her invitation to B to use her office as safe space. It's such a generous offer & elegant solution, since Paula is practically family :). When she reminded us that the all-school picnic was this evening B got very excited. So, we collected his things & went home. After snack B legoed & watched some Kratts' Creatures until dad came home & it was time to go to the picnic. Unfortunately, the crowd of people at the picnic kind of freaked B out, so C got a plate of food for both of them & they hung out in B's classroom (the picnic was outside). I got to visit with various friends & had 2 chairs to loan out, since my guys were inside. I was delighted when B wanted to come out for dessert & stayed outside to be social (it was getting dark by then & I wonder if it made all the people less intimidating, since he couldn't see them as well...).

I'm just about to go up & do the bedtime reading with B. B's having had a better day today was very heartening for me, as was all the planning to find ways for B to cope better. The thing is, school really is just beginning, & there's still time to find a good routine & ways for B to cope. It's hard to remember this when my kid is screaming with frustration & distress, but this is a good school for B & good place for us, as a family, to be.

Life goes splat...

I had an experience this morning at the grocery store that serves as a really good analogy for life at home, after school yesterday... (more about the experience later)

C & I had arranged to meet with B's teachers yesterday after school to update them on various things- how the summer went, new behaviours & how to cope with them, up-coming meds changes & the fact that B has a new psychiatrist. It took about 45 minutes, during which time B was watching a gerbil in one of the classrooms on the same floor as our meeting & learned a new computer game from another kid. We had brought cookies for the meeting & made sure B had some for snack, but unfortunately the change in his usual routine (or, at least, 4-day-old routine :) was too much for him... He had told his teacher, Jen, that he would be fine with the math homework that had been assigned that day (anything that doesn't require much writing is usually a piece of cake for him). But on the way home he began moaning about "why didn't I do my homework at school instead of playing a game...?" It seemed to us he was expecting a bit much of himself, & that he could just do the math quickly after we got home & then he & I could watch a movie together. But it was not to be. B became more & more distraught about the homework, & finally spiralled into full meltdown mode, curled on the sofa with Rufus over his face. He moaned & occasionally whacked himself in the face with Rufe. We sat with him, hoping to ride it out, but he just couldn't get free of his distress/anger/dilemma. I told him I thought that maybe one component was having told Jen he'd do it, but now not wanting to, & feeling that he didn't want to let her down. I have had that "damned if you do & damned if you don't" experience & know how unpleasant it is. Occasionally B would start to come out of it, but then he'd start moaning about homework again & descend back into the misery & face-banging. He seemed particularly angry at the person who invented homework... After 40 minutes I was in tears. He would cover his face so hard that he wasn't breathing properly, then make gasping sounds that made seem as if he'd vomit, & I was feeling scared. C & I had him wedged between us to prevent his falling off the sofa & getting hurt. Finally B started to take notice of us & his surroundings, but then he noticed that his face-banging with Rufus has caused Rufe's mouth fabric to split a bit, & he freaked out, thinking that he'd hurt Rufus. Sigh. I convinced him that I could fix him & finally B came back to earth... He tearfully asked if I would watch some Kratts' Creatures with him, so we had some tea & went upstairs to watch tv. By dinnertime B was pretty much back to his normal, joking self. I, however, was completely wiped-out. Life had gone splat big-time. After B was asleep (it took him longer than usual & he requested tylenol for a headache, which did not surprise me at all...) C & I tried to figure out what we could have done better to handle things. I really felt that this meltdown was worse than any of the others because he felt caught in a moral dilemma & couldn't get himself out. We probably could have been more proactive about how he used his time during the meeting. We really needed to have this meeting, though, & it was good to have both of us there... mostly, we just didn't predict that he'd have such a tough time with the variation in routine, since this is not usually an issue for B. The homework thing is a chronic thorn in B's side, though... what B really wants, & I believe needs, to do when he gets home from school is to recover from the stresses of being at school. When B's consultant teacher went to a conference on AS 2 years ago they completely revised the homework expectations of the kids with AS at school based on newly-reported research showing that homework does not benefit these kids very much, because they really do need the down-time instead. B's psychologist, however, has not wanted B to be entirely exempt from homework, so last year B & his teacher settled on reading-comprehension worksheets for most of his homework, & doing math & science homework if he felt comfortable with it. This worked very well. This year they have tried to start off with B doing the regular homework, & the first couple of assignments were ok. But after yesterday afternoon I am quite ready to throw in the towel. Perhaps they can try it again in 7th grade...

This morning I asked B during breakfast how he'd like to handle his lack of homework to hand in today. He asked me to speak to Jen privately, without him, & I said that would be fine. Jen & I sat down in a quiet place & I explained what happened, & we revisited the whole issue of whether or not homework is appropriate for B. She proposed exempting B from homework entirely, but knowing that B's psychologist, who hasn't yet set us in a wrong direction with B, wants B to participate in it, we decided that she'd give him the rest of the week off & then revisit things next week. B will be seeing Dr. M the last week in September, & you can bet we'll bring it up with him again. This time, I am firmly on my kid's side of the issue & will need convincing...

As for going splat, in a literal fashion... that just what happened to me at the grocery store this morning. I was getting one last, nearly-forgotten item, when the person restocking the shelves backed into the aisle & I tripped over her. It happened so fast I'm still a bit dazed... I landed hard on the floor, my left knee & hands taking the force of the fall. Within about 2 minutes they had a first-responder there, & within about 5 they had a bag of ice (what I really needed :). I'm happy to say that I walked out of the store (after going through the check-out) & was able to get home & put the groceries away. But thanks to my arthritis, my whole body now aches, so I plan to spend as much of today as possible sitting with ice packs (as I am now) on my various aches & pains. It was eye-opening to be reminded that my kid is not the only one who can go splat! And that splats can happen when least expected...

An early start...

It's school day #4. B has done so much wonderful stuff in the first 3 days that I'm ready for some "normalcy", but no... By 8:00 this morning we had already accomplished three (relatively :) amazing things today. The first was that B didn't freak out when he slept right through to the alarm this morning. B has come to depend on the hour before his official wake-up time of 7:00 am as "his" time, & though he can't do just anything he wants (he's expected to keep the noise down so parental units can get their beauty sleep...), he can watch tv, play a computer game with the headphones on, or lego very quietly. Mostly, I think he just needs time to adjust to the day, & whenever he's slept right up to the alarm before, he's gotten very angry about his lost time. Today, however, he sat tousel-headed in bed & said "wow, I really had a good sleep!" I got his clothes out & handed them to him as he sat there quietly. As soon as he looked me in the face he began telling me about a new character he's created named "chip", who is a computer companion to another of his characters. C had mentioned last evening after B went to bed that chip was the main topic of conversation after dinner (I went to a school meeting & arrived home just in time to read to B at bedtime). I was able to gently interrupt the flow of information about chip & ask B to get dressed for school & he happily complied as I left the room. Wow! No yells & self-recriminations for sleeping too long!

Next, as B was making his toast, I gently broached the idea of wearing his new raincoat to school. B had basically outgrown his old raincoat last spring, but there was something about the new one that freaked him out. It was different than the old one, which was a medium-blue slicker-type, unlined with a beaked hood. Land's End standard... except that LE changed the style last spring... so I bought the navy-blue one with a sweatshirt-grey lining (a plus, to my mind, since it'll be warmer), that has more of a hoodie profile than a slicker profile. B took one look at it last spring & refused to even consider wearing it, & wouldn't say why except that it "triggered bad thoughts". Big sigh. I try very hard to be aware of B's clothes preferences when buying him stuff. He grows so fast that it seems as if he's just gotten accustomed to one lot when we're on to the next. I try to buy similar styles (on sale, when I can) so that he'll be emotionally comfortable with them. B shows no interest yet in taking an active part in choosing his clothes, so I'm doing what I can here. It was pretty infuriating to have him reject a brand new coat out of hand... but my better nature took over (deeeep breath) & I just put the coat away & he went back to struggling into the outgrown one. Well, it's raining this morning, so I decided: new school year= new coat (maybe?). I mentioned matter-of-factly as he was buttering his toast that he had outgrown his old raincoat & that his new one, although still blue, is a little different. I said that I liked the fact that it has a hoodie-type lining because it'll be softer & warmer. B asked if it was shiny... & as I thought of an answer, he said "well, I guess it has to be, if it's going to be waterproof." I agreed, then showed it to him. Actually, it has a matte surface, which pleased him quite a bit. Another deep sigh of relief... & my kid wore his new raincoat to school.

Over breakfast I was leafing through the latest JoAnn Fabrics flyer & B saw Halloween costumes on the back. I mentioned that we're going to have to get started on his costume soon. We had idly discussed this before, but nothing conclusive. I have made B's costumes since day 1 & he has come to expect a lot... As he's gotten older it's been hard to find a costume that he wants to wear that would be recognisable to the rest of the world, though. He often wants to dress as the characters he creates in his head. When B was younger he dressed-up as various characters all the time, but as he's gotten older he's gotten shyer about dress-up & Halloween has become his main venue for it (sadly, because I really miss it!). C & I have tried to steer him toward recognisable characters because B has found it's not much fun to go trick-or-treating & no-one knows who you are (in our neighbourhood they ask...). B found this out when he dressed as Jedi twice (when he was 5 & 7), but these were off-years for the films & he had to keep telling people who he was ("I'm Qui Gon as a Padawan!"). Last year we managed to pull-off a coup when we came upon the idea of dressing as Sherlock Holmes. This really caught his imagination & everybody knew who he was. So... at breakfast this morning his first idea was to dress as his new character "chip", but I reminded him that nobody would know who he was. The he thought Inspecter Clouseu of Pink Panther fame would be good, but I was leery of this idea. B has never seen the movies & only knows the theme music & that the Inspector is a bumbler. I prefer that B know what he's getting into if he's going to dress up as someone & I told him so. The he thought maybe a pokemon- I could make him a Pikachu suit! Well, I probably could (I once made him a "techno-gerbil" suit for dress-up... you had to be there, I guess). But I was uncomfortable with the possibility of the kids teasing him for wearing something that a little kid might wear. I explained that this sort of suit is what people expect younger kids to wear & that I didn't want him to set himself up for teasing. OK, there's a part of me that says "why not Pikachu? B likes Pikachu & it might make him happy to dress-up as him." But there's another part of me that is very aware that B is getting older & bigger & it will not help him socially to dress like a little kid, & in fact might end up hurting him. B seemed to understand what I was getting at & decided against the Pikachu suit... And then it hit him... he could dress as a spy like Ck (his college-bound friend) does! I asked B if he wanted to be a surveillance spy or a "man-in-black-type" & he decided surveillance. He has loads of spy gear collected over the past few years, so it'll be pretty easy to dress him in black pants & turtleneck & then drape him with equipment. B was elated to have figured it out. I was delighted that he was pleased & had made a choice.

And all before 8:00 am... :)

B talks the talk...

B told his teachers yesterday that he wanted to talk to his class (& the other 5th-6th grade class) this afternoon about why he tics & about his Asperger's. The reason that he wanted to do this was to forestall any misunderstandings about his behaviours, particularly any thought that he might be ticcing to get attention... this is a real hot issue for B & this isn't the first time he's done difficult things to make sure people understand why he tics. He had asked me to be there for support, & I got to school about 10 minutes before he was going to speak. I managed to catch the end of his first music class of the year, which was a really fun (& hilarious) exercise in "theatre of the absurd" :) It was a nice intro to B's time to speak because everyone was relaxed & cheerful when they filed into B's room. I had caught-up with our friend Paula, new interim director of B's school, & whose college-age son is B's good friend & mentor, to let her know what B was going to do. She found a seat at the back of the room as B went to the front & asked me to sit beside him.

He was a bit more nervous than he'd been last year, & started out by explaining that he has a neurological difference (the term he settled on to replace "disorder") called Tourette's that gives him tics, & then he demonstrated a tic so everybody would recognise them for what they are. He said that he doens't have much control over the tics & that they are triggered by different things, like smells he doesn't like. He mumbled a bit about having Aspergers & OCD, but then seemed at a loss at that point, so his teacher, Jen, asked him to speak a bit more about the Aspergers, saying that she had learned a lot from his talk last year. B looked at me & I asked him if he could think of any things about AS that makes him do things differently. He made a beeline through the kids sitting on the floor to his desk, & pulled out his Alpha Smart, which had been delivered just today. He explained that because of AS he has trouble writing & uses the Alpha instead. The consultant teacher chimed-in that there are other kids in the classes that use Alphas or laptops as well, for many different reasons, & those kids spontaneously raised their hands & said what they use. B & I also spoke about how the AS makes it difficult for him to tell if he's being teased sometimes, so if he ever responds very seriously to fun teasing then they'll know why. B then explained that there are advantages to having AS. Good concentration & imagination are things he likes about having AS. B talked about the OCD, too, & how it makes him worry about things that have "about a 1% chance in quadrillion of happening" & that the worries can trigger tics for him. I mentioned that B chews gum in school because it helps him to focus & calm down. Paula raised her hand then & added that her son, who many of the kids in the class know (he went to B's school before high school & sometimes came back to visit her class), also has AS & found that his intense interest in airplanes helped him to learn to fly a plane last year. One of the other kids talked about his older brother with autism, & his interests, & I added that autism was another word used in connexion with AS. We talked about how everyone with AS doesn't have Tourettes or OCD. B then mentioned that there are different kinds of autism, & one called Kanner's makes people have difficulty communicating & doing other things, but that these folks can be just as smart as anyone else. B then took questions & comments, & one boy talked about the school he went to the previous year, where he was called a "retard" because he needed to chew things to stay calm, & he kept getting sent to the principal's office for chewing toothpicks & tape in class. We agreed that he had finally found a "chewing-friendly" school! A few kids told B that they thought he was courageous for speaking to them about his differences. B said that he would be happy to talk privately with them if they ever had questions. They applauded, then B thanked them all for listening. As they were getting homework & putting things away, more kids came up to B & said "good job" & patted him on the back.

As I looked around the room at the kids' faces, while B spoke, I saw many expressions. At first some were wary, not sure what was coming. As B spoke, & other kids added their comments, the faces became more open & interested. I sensed the stress level of the room dropping as they became engaged by B's words. Some of the kids who know him & heard him speak last year had encouraging looks on their faces. I saw the potential for misunderstandings dwindling in the face of B's honesty about himself & his feelings about his differences. I saw the potential for support & comfort between a group of varied & quirky kids growing. After he was done Jen told him she was proud of the leadership he'd shown. You really could see that this crowd was more likely to think twice before being unkind to each other based on their differences, thanks to B's role modelling.

B was definitely wiped out afterward, & he & his teacher agreed that he could do his homework tomorrow at school. His consultant teacher, Cherie, remarked that she wished they could tape B talking about his differences some year. I like this school very much, as you can imagine. No one said the word "inspiring" :) This school is committed to building community among the students & their acceptance of all kids, their gifts & difficulties, as a whole people bodes well for success in this effort.

On the way home B requested popcorn & Canadian tea for snack (major comfort foods for both of us :). We sat down in front of another rented Pokemon movie & ate our snack together, & just relaxed. I am a lucky mom...

More thoughts about "functioning"...

It has been a very busy weekend & my head is so full of thoughts that I told my friend Paula this morning that I've been feeling that it might explode! :) B was very kind this morning, after I explained to him that I had awoken at 3:45 this morning & not gone back to sleep until 6:00 because so many thoughts were swirling around my head. He has been having trouble lately with colours of things (dishes, cups, clothing) taking on unpleasant symbolism or causing unpleasant thoughts & I'm still not up to speed with this. He was just about to pitch a fit about the plate I handed him (we were a bit behind schedule for breakfast so I was doing some of the stuff he usually does), & I was just about to respond in kind... but I explained my overwhemedness & lack of sleep & he backed off immediately. Over breakfast he told me that he was very worried about the use of pesticides in the rainforests, & the cutting down of rainforests, & he just couldn't understand why anyone would let that happen to their land or country. I explained that over the course of decades & even centuries, the indigenous peoples of the rainforests have lost their traditional ways of life, so they have been encouraged to cut down rainforests to start farms so that they can feed themselves & earn money to live on. This was somewhat simplistic, but I didn't want him thinking that native people were all bad for allowing deforestation to happen. To turn things to a more positive perspective, I told him that there are people trying to help indigenous people all over the world to reclaim their ways of life & find markets for the traditional things they make. I also told him about the Heifer Project- that takes donations to buy animals that help people all over the world to reclaim their traditions & allow them to have better lives. B really sparked to this idea & decided to talk to his teachers at school about doing a class project to support the Heifer Project. Last year his class made things to sell, to give to the Red Cross for Katrina relief, so these kids are already motivated to make a difference in the world. B's teacher told B she thought his idea was a great one, & it turns out that other kids in his class have been thinking about the Heifer Project, too. So B did some online research at school today & with the info he learned, did a presentation to the other 5th-6th grade class, & they have agreed to become part of the effort as well. I was pretty amazed by how quickly the whole thing snowballed :) I love the idea of these kids feeling empowered to change the world...

When I picked B up from school (another good day, as you can see :), I heard the Heifer Project news as well as the news that B has decided to speak to both classes tomorrow afternoon about having Aspergers, OCD, & Tourettes, like he did last fall. Half of the kids were not present for B's previous chat, & he told me that there have already been some comments & misunderstanding about B's behaviour from the other kids, so B decided to take the bull by the horns yet again. He would like me to be there, too, so I'll go to pick him up a bit early so I can sit in. On our way home in the car I gently brought up the subject of how he refers to the AS, OCD, & Tourettes as "disorders". I asked him what he thought "disorder" meant & he said he didn't really know... so I explained that "disorder" implies something that doesn't work right. B immediately got upset, saying that that's not what he meant & moaning that he's used that term with the other kids before. I told him that it's ok, that kids can learn new terms. I asked him if he could think of another way of describing the AS, OCD, & Tourettes, but he was at a loss, so I suggested "differences" or "neurological differences". I told him that these are terms that are more neutral & don't imply that there's something wrong... Then we both changed the subject. B was telling me what happens when you say the "m-u-f-word" to a runrat ("muffin"- their favourite food) & I was giggling & saying "muffin" & Chibi was eeping... Knowing my kid he will mull the whole word thing over inside & sort out what feels best for him. As much as I don't want to put words in his mouth or dictate how he feels about himself, I also want him to be using the words that accurately describe how he feels about himself, & by his rreaction, "disorders" was the wrong word.

I have also been mulling over, in the back of my mind, the thoughts & feelings that the idea of "functioning" as applied to autism brings up for me. When I look at the popular images of autistic people in our culture, what I see is "Rainman" & brilliant but odd Bill Gates-types. I believe that we live in a sound-bite society that irritatingly refuses to think deeply about things, but insists on easily-digested images. This tendency hurts all people by expecting everyone to fall into easily-indentified stereotypes. I find it personally annoying when others assume that I am a "typical" middle-aged housewife, or assume that I am as able as I may look (since my arthritis pain is not visible, but very real...). I find it even more disturbing that the range of behaviours that my son displays in public alternately make people think him a prodigy or crazy. B has an amazing & imaginative vocabulary, which he uses to good effect, particularly when he's meeting people he doesn't know. Sometimes it feels as though he has learned to use it as a shield, to keep people at arms' length & help him to feel safe. Whatever his motivations, it is impressive & people remark about how smart he is (his "high-functioning" capability). Other times he's banging his head on things, running away, & moaning, which appears quite "low-functioning" & even self-destructive or crazy. The truth about my kid is none of these things, though. Thanks to feedback from adults with autism, such as my blogging-buddy Zilari, I have learned that head-banging is neither self-destructive nor crazy behaviour, but a way to reduce stress. B's use of a precocious vocabulary may also be a stress-reducer. But neither of these things define my kid, any more that the designations "high-functioning" or "low-functioning" could. To try to put him the the box of either of these definitions demeans him & his complex possibilities, right now & for the future (Kristina has a great post about the diminishing of services for kids with autism as they get older, which ignores their needs & abilities to be life-long learners).

My grandmother always said "while there's life, there's hope". I think this applies very well to my child & all children, no matter their relative abilities. The artificial timelines for learning that we have become so dependant on (to know whether or not kids are "learning") are just tools, & are only useful if they are used to give understanding of what kind of assistance a child may need to achieve their true potential. And potential really is always potential. I am still growing & learning, as I live... every day I learn something new. I hope never to achieve the end of my potential & I wish that for B as well. Let's hope that our society can be encouraged to keep on learning the truth about autistic people, & that the public's identification of people with autism will transcend "functioning" levels & stereotyped images.

When worlds collide...

I inadvertantly learned something very important this morning. After getting B safely to bed last night, his week of transitions making him a bit fussy, I got on the laptop. C hung out doing stuff on the big computer while I blogged, then kissed me goodnight & went to bed around 10:00. This time of the day (night, really) has become my time. Over the summer this time was my compensation for rarely being in the house alone & nearly always being "on call" to my family. Not that being "on call" is an onerous thing, & certainly not that C doesn't do his share of caring for B... but you never know when it'll take 2 parents to weather a storm or we have to start tag-teaming B in order to get one or the other of us freed up to make a meal or a meeting. So, as long as I do quiet things, I am a free woman after everyone goes to bed. The problem last night was that I had a few too many things to do... My first prioity was to update the blog, which I did earlier than usual because the Harry Potter forum I help moderate was posting a new discussion forum last night, & I wanted to be available in there. I modded & sleuthed until just past midnight, then realised that I had really wanted to watch some of my new InuYasha dvd, which had been languishing for days... So I did. I am a night-time shower-taker, so by the time I took my shower & got to bed it was after 2:00 am. Yawn!

C & B made good on their plans for an early-morning sail this morning, even though it was raining when they got to the club. They ate breakfast in the car, by which time the rain had stopped, so they went for it. Meanwhile, I tried to sleep in- although I kept waking up every hour or so after they had left (at 6:30). At 9:45 I got up, & then it was that I learned the important lesson- I am just too old (or something), now to be staying up until 2:00 am... I just couldn't snap back by sleeping in & felt dreadful. I was able to get dressed & eat some breakfast, & was just ready to get back in the forums to see what had happened overnight when C & B got home. B made a beeline for upstairs, legos, & Kratts' Creatures, after checking it out with me on the way by (for form's sake, at least). I wasn't complaining. I was just about able to sit with the laptop on my lap & read, my head was so fuzzy... C made himself a lunch & went to work for a couple hours to catch up on his paperwork, reminding me that we had a Japanese lesson at 1:00 as he went out the door. That was a very helpful thing, in my woozy state of mind. I was able to finish up in the forums by 11:30 & was about to check in with B when I heard the 4th "shit!" from upstairs that morning. He had been yelling "shit!" while legoing & watching tv, & I would call up & ask if he was ok, & he would say yes, & I would remind him not to yell "shit!" (we have been working on the swearing thing for months, it seems) & to try some of the other alternatives we'd thought of. Finally, this 4th time, I'd had it & went upstairs yelling (not proud of it... sigh). As I yelled, became aware that it wasn't so much what he was saying that upset me but that he had been ignoring me. He didn't even remember my calling up to him to see if he was ok more than once... As I calmed down, I apologised for yelling, but told him that it felt bad to be ignored, & that we really had to find some sort of compromise with the swearing thing. He moaned that he didn't see why some words are worse than others, & that the substitutes we've brainstormed don't feel the same. What was causing most of the trouble was when a lego wouldn't pop in or out without stinging him, so I asked him please to just yell "ow!" when that happens. We talked about the power of words & I told him that he's just going to have to take it on faith that there are appropriate & inappropriate times to yell "shit!". Then we talked about an older friend of his who has AS & whom we have never heard swear. I asked B if he thought it was possible that this could be because his friend knows that he can't figure out the appropriate & inappropriate times to do it, & so has decided not to swear at all, to be safe... B agreed that this was possible. Then I pulled out my ace in the hole... (I have been thinking about this) I told B that he could say "shit" in japanese (which he learned accidentally & had been using before I finally sat on him...) as long as he didn't say it in front of our japanese teacher. B got a small smile on his face & said that he thought that was fair. So, even though I started out yelling, we ended-up feeling friendly toward each other, finding common ground, & B even told me that he could understand why I was so upset, with him not listening to me... sweet kid :)

We had some lunch, although I had a lot of trouble focusing on eating. I was wandering around tidying up & finding a wrapper for the money we pay our japanese teacher-I always try to put it in an otoshidama wrapper or tato or something nice, in japanese fashion. Then I was thinking about what sort of tea to make (B & I have been sharing the tea blends we created a couple summers ago with our teacher, who really likes herb tea). My main concern was to gather my scattered brains before the lesson, since it would be embarrassing otherwise. After Tomoko, our teacher, arrived we hadn't even gotten to the tea before B started to meltdown... he had been curled up on the sofa with a pillow over his face & I had been trying to get him to sit up & be ready fro the lesson, when he suddenly went into a fetal position & started hitting his face with Rufus & moaning... I was so startled it took me a minute to realise what was happening. I tried asking him possible environmental triggers, but he kept shaking his head. Tomoko offered to leave, but he said no, still rocking & batting himself on the head. Finally I asked if it was hands & feet (a common trigger for him) & he kind of screamed yes, so I talked soothingly, told him that I'd been expecting the challenges of the week to show up in overwhelming feelings, & that he would feel better soon. I mentioned that we had new japanese chocolates to try today, & all of a sudden he rocked upright, red-faced, dazed, & teary. The chocos were enough of a distraction from the bad thoughts that he was able to emerge. He was bleary for a while, but managed some chocolate & tea. He wanted to stay for lesson, but he also seemed to need to do something else. C had come in while B was in meltdown, & he offered to take B to rent some movies for the evening as promised, so they went & Tomoko & I had the lesson (more adjectives!) which I'll share with B this week. I was very grateful that, if we had to have anyone else with us during meltdown, it was Tomoko. Not only does she feel like family, having been teaching us for more than a year, but she is in her final year of working on her masters in Family Counseling & Therapy, & she really understands what's going on with B. She observed, after they had left, how impressive it is that B can function so well with so many overwhelming thoughts & feelings. Having her with us also helped me to process the extra layer feelings I get when B is having difficulty in public, because she is a supportive presence.

After lesson I began getting ready for hosting our church choir picnic & first rehearsal this evening. This was the reason for renting movies for B, so he'd have something fun to do :) He & C found 3 Pokemon movies he hadn't yet seen, so B was very psyched. C & I tidied & moved things around to get ready for 15-20 extra people in the house. I baked brownies (good thing because we ended up with hardly any desserts :), put beverages in the fridge, got the coffee-maker set up, etc, etc... At some point I realised that I had pulled my head together & was thinking clearly- probably during japanese- which made it possible to function & even have a good time at the picnic :)

So, not only have I learned that I really have to avoid staying up so late, but I also need to find other ways & times to get my needs met :) I probably should have gone to bed after moderating in my HP world & just waited to get the anime fix (I justify it all by watching with the japanese soundtrack so that I learn something- I even recognised one of my new adjectives last night! :). My B/family world do not function very well when I am not functioning well, either. Having B back in school should allow me to find time to do the things that help me feel balanced & taken care of... but it will take time to get back into the schoolyear routine. Perhaps staying up late was my own personal version of one of B's meltdowns, a way of dealing with all of the things I hadn't been able to do for so long. On that note, it's after midnight, so off to bed!

Well planted at school... :)

Well, after 2 days at school B seems quite happily installed in his new class (with his "old" teachers :). He even had a close encounter with a new student in his class who is having some difficulty adjusting to her new school (& was, reportedly, rude to the teacher) & survived unscathed, if scandalised ("She talked back to Jen, Mom!"). They were supposed to be interviewing each other about their summer vacations & I guess it went fine while he interviewed her, but after quizzing B about his summer activities she decided they were boring & declared that B must have been abducted by aliens & had his memory wiped...! I was extremely impressed by B's low-key response to this, as he has recurring bad thoughts about aliens & finds the whole concept of messing with minds & memories so disturbing that it sets him ticcing, usually. I guess the teacher overheard this episode & immediately took the new student out for a "little talk". B said that he was able to finish the interview activity with one of the consultant teachers, who had visited Thailand (!), so he ended-up having a nice time hearing about Thailand. After school B legoed madly (after snack & successfully negotiating with me to put off homework until dinner time :). I let him go for it for a couple of hours & then offered to watch some tv with him, which he readily agreed to. He's been into nature shows lately & I reminded him that we have 5 vcr tapes of "Kratts' Creatures" that I made when he was very little (some of them date from the year before he was born), & which he has not watched in at least 3 or 4 years. So we are now working our way through tape #1, revisiting them like old friends. B does seem to be taking a lot more in now, though, & has been regaling us with tidbits of animal info at various moments. He has certainly been applying this knowledge to Chibi's backstory & has been filling our morning trips to school with all sorts of interesting information on runrat genetics & habitat (resulting in a couple of missed turns :) He had a Chibi emergency yesterday & almost didn't take her today. I guess one of her eyes was loose & he lost it. He was pretty upset about her being "blind" in one eye for a while, & the first thing he did when he got home was find a new one. I convinced him that Chibi wasn't hurt by losing her eye & that it wasn't his fault that the lego part was loose, then suggested that we put a spare eye in a ziplok bag & keep it in his backpack for future emergencies. He really does seem to need a touchstone of sorts at school & his emotional connexion with Chibs (& her pocket-sizedness) makes her a good candidate. He went to bed just fine, but didn't seem excessively tired, either. I have been trying lately to stop reading before he is asleep & letting him fall asleep without intervention... sometimes he wants me to sit with him for a few minutes, but he's been able to fall asleep on his own for the past few nights- a nice change :)

School went off without a hitch again today. He asked to change the location of his desk because he was being triggered by a classmate (& friend, actually) who was directly across from him, & the switch was made without any fuss. When I asked him what the best part of the day was, it was a tie between playground time & the new director of the school (our friend Paula, mom to his now college-student, kid-sitter Ck) bringing his class chocolate truffles at the end of the day (!). I guess she'd sat-in for a discussion of a survey they'd taken (yesterday's homework) that asked questions like "are you a rock or a feather?" & "are you chocolate or vanilla?". It was a pretty neat exercise, & Paula just happened to have been given a gift of truffles that she thought would be a nice punctuation to the discussion :). After school & snack B legoed again, but was having a lot of frustration with a model that wouldn't do what he pictured it in his mind doing, & there was a lot of swearing from upstairs, so I went up & suggested we watch "Kratts' Creatures" again & he agreed. I was interesteded to read recently, in my "The Dharma of Star Wars" book (by Buddhist monk Matthew Bortolin), that this tactic of "switching gears" when you're stuck is also a Buddhist practice, that Bortolin calls "changing the peg". I picked this book up again recently, partly inspired by the book meme & partly because I think I must be ready for more coaching in my spiritual practise. What I've been reading about lately (the Buddhist concept of nutriments) has been particularly relevant to where I'm at in life (are there any co-incidences?) & it was really neat to see this technique that we've have been teaching B, to help him cope with frustration, in the book. Today was Friday, our regular night for grammie to come to dinner, & the first night that Paula has joined us as well. I decided to extend the invite to her when Ck left for college, since I can only imagine what it must be like to come home & nobody but the dog's there- after more than 18 years of having your kid around. If I ever do go through this, I don't expect it to be pretty. She & Ck have been spending holidays with us for the past couple of years, so it seemed natural to expand the family on a regular basis. We have such a blast with Paula... tonight she told us about going to see "Snakes on a Plane" with Ck before he left for college. She said it was so bad it was good & told us about some of the scenes. B was laughing so hard he could hardly breathe. He has been fascinated by poisonous snakes lately, & although he struggles with the scariness of it all, he was able to put it in perspective & not let it trigger him. He even went to bed without much fuss (he did complain of a headache, which he doesn't often do, so I gave him some tylenol & that seemed to help). I was able to leave him to fall asleep on his own again, after reading another chapter of "Dragondrums".

Tomorrow C & B plan to go sailing in the morning, before the motor boats hit the bay (& the predicted rain). We will have a Japanese lesson after lunch & then we are hosting the church choir picnic at dinner time. I feel very grateful to have B so happily & well planted in school, so soon!

Home alone...

... ok, not really alone. Rufus is right here on the sofa with me :) I'll put him in for a nap a little later, once I catch my breath from the busy morning. The alarm in B's room, set for 7:00 am, woke us both up, which is unusual, since B tends to get up around 6-ish. I made sure he was in bed by 8:30 last night & he fell asleep around 9:00... I am having difficulty transitioning from staying up late & getting up later (than 7:00 am) all summer, so I had been depending on his alarm to get me going. B was a little slow getting dressed, said he was thinking, so I jokingly told him he's not allowed to think until after breakfast. We'll see how this goes, since this "thinking instead of getting dressed" thing is a well-established pattern. I had been using our getting-out-of-the house-on-time chart to help with this, but B & I decided over the summer that he doesn't need this chart any more (& he didn't seem to mind foregoing the little treats he had been earning...!) so I don't have that to fall back on any more. B wanted rice for brekkie, with soy sauce, eaten with chopsticks. I've been having him retrieve his own vitamins (multi & C), which he remembered just fine, & he poured his own milk as well. About 1/2 way through the bowl of rice he told me he was full, but that he couldn't figure out why. He pondered this until I told him he was probably distracted by it being the first day of school (I privately diagnosed a case of butterflies, but didn't think I needed to point him in the direction of nervousness if he hadn't figured it out for himself). He brushed his teeth & went to lego a bit before we left. I asked him to pick out who was going to school with him (instead of Rufus) & he chose Chibi, who fits nicely in his pocket. He chatted about Chibi the whole way to school- her pedigree, why runrats make the eeping sound they do, the machines they designed to collect mushrooms for them... :) At school we hiked up the steps to the third floor & found his locker. He unloaded & then made a beeline for his desk & sat down. Looked like he was home :) We read the instructions written on the white board by his teacher, Jen, to make a magnetic name tag for their lockers & also a "fairness stick" with their name on it (Jen explained that the stick was a system for fairly choosing kids to do things, so there would be less feeling that someone was being favoured). B wrote his name on his locker magnet, then asked me to write it in katakana for him, underneath the english, so I did :) He happily stuck it on, then I kissed him & told him I was moving on. He was calm & seemed comfortable with all the busyness around him. I wandered downstairs, chatting with folks, & found the special ed co-ordinator free, so we talked a bit, which reminded me that I hadn't told Cherie, his consultant teacher, about the new meltdown behaviours & the code words we've developed with B to help him tell us what's happening. So I went back upstairs to find her & we went into her office & talkedt. C & I had decided it might be best for them to call me if B had a meltdown, until they have seen one through with him & know what to do. I actually don't anticipate B having much trouble with meltdowns at school, at least for a while, although home time after school may be hairy for a bit as he decompensates from the new experiences & responsibilities at school. Cherie has also been thinking a lot about this, & although 5th grade is advertised as having more homework, she is going to try to keep it minimal until we are sure B has enough downtime at home after school & is getting his needs for non-school activities met. I was once-again aware of how grateful & blessed we are to have the same teachers as last year, even though B is in a new room on a new floor of the school. My morning (& the previous week, I expect) would have been very different if we were getting used to a new person as B's consultant teacher (aka "crash landing pad").

After talking with Cherie I flitted around, helping clean up some stuff here & checking in with someone else there, until I finally made my way to the first day parent's tea, where I was supposed to be greeting people, outside. Once there I found myself chatting with the parent of a girl who was in the 3rd-4th grade with B last year (she was in 3rd & B was in 4th). I had known this parent by sight & we waved at each other last year, but we had never spoken in depth... She asked me how B was doing, & I got the feeling that she knew that B might have adjustment difficulties (I wonder sometimes what other parents think of my kid & his interesting range of behaviours). She then explained that she has an older daughter with autism at another school, specifically for autistic kids (I'd never heard of it) which I certainly had never known. She said this daughter was "low-functioning", which I guessed was supposed to explain things. We were joined by a new parent to the school, but a friend of the mom I was talking to, who also has an older child with autism, mainstreamed in their district. They seemed to know each other from an autism parents' group, so I listened & occasionally chimed-in when it was relevant. I was really curious about this mom's "low-functioning" daughter. She mentioned that her daughter in B's class last year had come home & told her about B's behaviours in the class, & that she'd told her daughter that, "he probably has something that doesn't work in his brain like your sister" & after that her daughter seemed ok with the way B acts.

-Have you ever been part of a conversation that seemed to be going places very quickly & you don't really have time to react? That's just how I felt about this conversation. I would just process one idea or statement & another one would come along... This mom was nice, if a bit harried-looking, & having very mixed feelings about going home to an empty house for the first time in 12 years (her youngest had just started school, too). I could really resonate to that, since I'm usually a basket-case the first day B's at school. The other autism mom we were chatting with asked her if she was still using a special diet for her daughter, & she said that they had slipped away from it over the summer, beginning when the autistic child had tried to beat up her younger sisters when she saw them eating food she wasn't allowed... Another parent, a friend of mine whose kids are both dyslexic, joined the conversation at this point. She made a comment that indicated that this autistic 12-year-old might be behaving, developmentally, like a regular 12-year-old, but we were assured that this child was "low-functioning" by her mom. The mom did talk about how well her daughter responds when she's one-on-one with her, with no "behaviours" & no "stims" & I talked about what B & I do over the summer & how well he does with our projects & my flexibility. Eventually we both moved on to other conversations & the tea was over. I left school at 10:15 to go grocery shopping & got home just before lunch time. The whole time I kept turning the conversation over in my head, though.

I feel badly about some of what I heard this mom say, but I can't find it in my heart to condemn her. I know too well how our individual experiences as human beings make the raising of a child with autism an unique experience, as much as we all do have experiences in common. I feel strongly that society's overwhelming attitude that having a "different" child is somehow shameful has coloured this mother's life & that of her family. I wonder if the shame has taken away her hope- the "low-functioning" label she used repeatedly (even when reporting behaviour that I would not consider to be "low-functioning") seemed very much taken for granted. I'm sure that having 2 youger children has made it difficult to provide her child with the carefully crafted life that C & I do for our smaller family, & I have no idea how involved her husband is in the raising of their children. I have to admit that the "low-functioning" labelling grated on me, & that she described my son's brain as "not working" was uncomfortable to me, since we explain things much more completely to B, & try to help him feel comfortable with his neurological differences. I like to imagine that, if I were blessed with a "lower-functioning" child, I would give them just as much care & find just as many things to like about them as I do B. I guess one reason & don't like labelling people as "high-functioning" & "low-functioning" is that it ignores so many other things about them, & it also assumes some things about my kid that are not fair to assume. He is very bright & has never had difficulty with speech (although he receives pragmatic speech support), however he did not have normal vision until he was 7 years old & that still leaves it's mark on his life. B is a "head-banger", but he can turn around later & discuss it with you. B has amazing potential to go far in the world, but I also see the possibility that he may never leave home... How do you categorise someone like that's "functioning"? It just seems silly to me to try. Am I being stupid? I do not intend to insult any people who have something invested in describing their child by their functioning, & I certainly am aware that my kid is mainstreamed (with a huge amount of support) where there may be kids out there who are not candidates to be in a "regular" school. But I feel it diminishes everyone when we try to describe people by something as fluid & subjective as "functioning" & I really don't want to see anyone that way. Having experienced the shame & uncertainty of having a child that sometimes behaves inappropriately in public, I can understand that it might just be easier to lump a complicated set of behaviours into something the rest of the world can understand... but I resist doing that. I don't mind the label "autistic" for my child, but I do mind his being pidgeonholed by those behaviours as something that he isn't.

I think it comes down to compassion & the ability to imagine behaviours as neutral- neither bad not good. Reading what Zilari has said about the stress-relief of head-banging behaviours has helped me to view this less negatively. I still want to protect my kid from injury, but I don't see it as a pathology any more. Compassion for my kid makes me want to understand him & not judge him. Compassion for myself allows me to feel the societally-applied shame, but to move past it, to find groups of people who do not view my kid or my family in a negative way, so that I don't have to live in or with shame. Compassion for others helps me avoid judging them, to see their humanity, to keep in communication with them so that we may learn from each other.

I sure got more than I bargained for on this first day of school :) I learned a lot. In about 1/2 hour I'll go get B & find out how his day went- I really can't wait to find out :) Then we'll have a snack, do the homework thing if there is any, then maybe he'll lego or we'll watch some Kratts' Creatures. Mostly, though, we'll play it loose & flexible until I have a good sense of how shool is affecting B. I am trying to imagine the next few weeks, with time to myself during the day- what am I going to do?

Last day before school begins...

Yesterday was a rest day, of sorts. We had no schedule telling us when to do what & that seemed to be just fine for both B & me. I had some house-holdy things to do, like make bread & wash rugs, but there was time to sit & read, too. B spent in the neighbourhood of 2 1/2 hours legoing yesterday afternoon, a last burst before the end of summer perhaps. He even, gasp, went down in the basement to forage for legos that had been carefully boxed & put away because there's just no room for them upstairs. B has had a morbid fear of spiders since the OCD kicked-in 2+ years ago, & our basement is spider-central, so you can imagine the motivation that had him rummaging around down there. I was pretty amazed... He has not given up on the lego racer game that disappointed him so badly a few days ago, but is playing it at the lower level, adding cars to his team & doing the games over & over. He remembered that he had some of the lego racers, put away for a couple years, & was able to find them in the basement. He looked online & discovered that this is yet another series of legos no longer available (at least in the US), like his beloved Spybots, but since I found another spybot on ebay he has hopes... This is one thing I've noticed about B & the games on the lego site: that once he plays one of the games, he likes to have the legos associated with the game. That's not too difficult, since B is a major legomaniac & we have a behavioural charting system that allows him to earn these coveted legos, & I don't suppose it's any surprise that the games on the site make him want legos... that's what it's for, ultimately. What is kind of cool is that he'll spend as much or more time playing with the legos as he does playing the games online. When he was doing "Worldbuilder 2" (the first one wasn't mac compatible) he made all these cute ducks & fish out of regular bricks & had fleets of them around his room :) So, I'm not surprised that he's trying to collect all of the racers, although I'm not rushing over to ebay to look for the ones he's missing. He goes in & out of these phases pretty quickly & I have a feeling that school starting tomorrow may derail some of the energy he's been putting into this particular game. While he was in the basement B also retrieved his big Knights' Kingdom set (Hannukah prezzie) that had been put away in pieces, & is now in the process of re-synthesising it into his "Knight Rangers" storyline, complete with scorpion drones for the bad guy, & the knight minifigs being the rangers. He's reconfiguring bionicles to be their 'zords... they look really neat :)

Today we went over to school to drop off all of B's stuff, see his new room, & say hi to everyone. We have done this every year that B has been at Cobblestone (this is his 5th) & it really helps him start off on the right foot. This year they have desks (ultra cool :), so he put some of his stuff away in his desk, then picked out a locker. I found his wipes box (I had written "usagi" on it in hiragana & drew a picture of a rabbit, which is what it means, to distract from the fact that it is a wipes box... B was only teased by one person last year for having wipes at school & was able to manage the teasing just fine on his own) & put together some spare clothes- particularly boxers- to have on hand. We climbed all the way to the 3rd floor (this will either kill me or I'll be in the best cardiac shape since I was in my 20's & pushing 10k races in my wheelchair) & found his room. His teacher was extra glad to see him because they have macs in his room this year & she needed help figuring out how to use them. B was equally as happy to provide assistance :) After seeing everybody on the 3rd floor we walked through the rest of the school, saying hi to friends & teachers old & new. The place was still a work in progress, but a lot of classrooms had been reassigned ove the summer & furniture moved, & new coats of paint spiffing things up, so the place is looking good. After about 1 1/2 hours at school we went to our favourite Japanese restaurant for an end-of-summer treat. B was quick to point out that we can go back on the next school holiday :)

C only works a half-day on Wednesdays, so he got home just after we did. He & B made plans for their afternoon while I got ready for an appointment I've been waiting for for 4 months... Although I have had chronic, low-level arthritis for 30 years (since I was 18), I've been having more trouble for the past couple of years. Last February I had a major back flare-up that sent me to a (wonderful) chiropracter, who I'm still seeing for maintenance. Then in May my right hand swelled up so badly that I couldn't use 3 fingers. I was having a lot of trouble functioning that way (I couldn't type, for one thing!) so I went in to see my internist, who sent me for bloodwork & xrays & then to a rheumatologist. In our town, is is nearly impossible to get in to see a rheumatologist (C has patients who travel 100 miles to see one), but I was willing to wait (4 months) & today the wait was over. Before I went, C & I talked about what I was hoping to get from this appointment, which helped a lot. My main concerns are that I've had to cut back drastically on my handspinning (& I teach handspinning...), my weaving, & my knitting (which I also teach), plus I'm at a higher level of constant pain than I've been for many years. This affects my available energy & therefore my ability to cope with life & my kid. I was feeling some butterflies, too, as I always do before meeting a new doctor. In my life I have had doctors tell me that things are "all in my head" & that I shouldn't complain because things could be worse (such helpful medical opnions... grrr) so I am always a bit nervous about what I'm about to encounter. I will say that age & having a physician husband has helped me receive more respect, so I don't feel intimidated like I used to. In any case, off I went...

As C had warned me, I saw a fellow first, who did the initial interview & exam. He was a nice kid (wow, do they ever look young these days) & seemed to be respectful & thorough. Finally the main event- the rheumatologist arrived. I was a bit put off at first because he didn't really look at me, just quizzed the fellow about me. But things began to get interesting when he asked the fellow for opinions, & then challenged him (I felt a little sorry for the kid). He referred to me as a "young woman" at one point which was very kind :) & I told him so, but, of course, it was in the context of having arthritis (the doctor isn't more that 5 years older than I am). He definitely made eye-contact with me & spoke directly to me as he did his exam, which was heartening. When it was over, he seemed interested & perhaps even intrigued. He wanted to know more about my life, sleep habits, etc... & I had to explain that I don't pay attention in as much detail to such things (how long does it take my morning stiffness to pass? I dunno- once I've got B up & running I'm not thinking about me much...). He was quite interested in B & his autism, how having the arthritis adversely affect my energy level was not helping me to do what I need to for B, & just how family life with him is. It was nice to be able to say that I don't feel like we are a family in a state of emergency, but that we have a happy home & good support. He'd heard of B's school & said nice things about it. It's funny how sharing these sorts of things help make the doctor-patient interaction feel more personal & respectful. I was aware that he's a busy man (I'd waited 4 months to see him!), but that didn't prevent him from being respectful & treating me as a human being. The best part is that he's really interested in figuring out, after 30 years, what's behind my arthritis & how he can best help me to keep it from cramping my style. I left the office after 1 1/2 half hours a bit breathless, feeling that I'd been heard & was on the right path. I do have homework... I have to get more blood tests (working that into the next couple of days will be interesting), I have to call & have some x-ray reports sent to him, & I have to have some bone scans in the near future- they are working out the details with my schedule in mind. Going through the experience of tracking down the cause of my arthritis & looking at possible treatments has opened a long-closed can-of-worms in my heart & mind. This condition once put me in a wheelchair & on crutches & canes. During that time I was visibly, identifiably a disabled person, & I got involved in disabled-rights causes, like the passing of the "504" legislation (this was back in the late 70's), as a matter of personal survival. In the years since I recovered from that flare-up & literally learned to walk again, I have had mild arthritis but have not been identified as a "disabled person". I had to put so much of what I learned back then into a room in my mind & try to forget about it. I could not mesh the 2 existences... When I discovered that B was developmentally delayed, the door opened a crack. Many of the things I learned back then have helped in my advocacy for my son. Since last summer I have been intermittently disabled by swollen knees, painful back, & swollen hands, & I am finding the door opening even more & the memories coming back to me. I have been reading blogs by members of the Autism Hub that remind me very much of my experiences when I was "disabled". It's a very odd experience, painful & yet enlightening, to be putting these pieces of my life back together. I guess it's really about time I did so, & it also reminds me very much that my "Temporarily Able-Bodied" (TABs are what we called the non-disabled back in the 70's :) status is ticking away, like a timer about to go off...

While I was gone, C & B went to get B a haircut (& an ice cream at the parlour that occupies part of the salon these days- C brought home a pint of ice cream, too, bless him!), then B had a bath, since C would be at a church meeting this evening during the regular tubby time. C told me they were talking about tomorrow evening & how C won't be home for dinner for some computer training at work, & B remarked, "I guess they still haven't given up on you, dad." I really snickered when C repeated this conversation- C is notoriously computer-phobic. he just doesn't have the computer sense that B & I have, & is always getting himself into trouble electronically. It's amazing how our kids get to know us... I got home from my appointment in time to rebraid B's rat tail. He was getting increasingly ticcy & was having trouble getting his shirt back on, with major tic interruptions. C finally went upstairs & coached B into getting his shirt on, then left him to some major legoing... Dinner time came & C went up to let B know, but came down without him. he told me B was "sparking" & really focused on the image in his mind of the lego he was creating, so he decided to give B more time. We ate our dinner, & finally we heard B call down that he was ready to eat. B was much calmer when he came down & ready to be with us. When we discussed it later, we decided that letting B keep going with the lego was the right thing to do, rather than trying to force a transition & end up holding a melting-down kid for the same amount of time as he peacefully legoed. C went off to his meeting & B & I had an uneventful evening. B has been very into nature shows lately, & I reminded him that we have 5 Kratt's Creatures tapes that I made when he was little, so he eagerly agreed to watch some before bedtime. Then, after some fleeting, unpleasant thoughts as he got settled for bed, B was ready to listen to me read. I finished the book before he was asleep, but he was ok with my leaving & fell asleep quickly.

Today B told everyone at school that he was looking forward to coming back to school (I told them it was because I've been boring him at home :). He's psyched about having his own desk, the prospect of new science projects (he enquired specifically about that), & having macs in the classroom. I think we're as ready as we can be!

A day at the race...

Today the annual Labour Day regatta, called "The Brown Jug" (guess what the trophies are :) took place on the bay where we sail. It's sponsored by the 2 remaining one-design clubs on the bay & has been held since 1952. I mentioned in this post that B had almost sailed his first sailboat race with his dad & granddad just a couple of weeks ago while we were on vacation, but were rained out. We have never done the Brown Jug regatta before, mostly due to B being too young to be entertained for such a long race (usually the full length of the bay twice around) in a small (15-foot) boat, but this year C & B decided to go for it :) We had been talking about opportunities for B to race, since C has a regular crew for fleet racing (& a championship title to defend), & the Brown Jug seemed perfect. It's a multi-club, multi-fleet, handicapped race (meaning that they stagger the starts according to how fast the class of boat is, so that everyone has the chance to win) that no-one takes too seriously, which makes it a lot of fun & perfect for a beginning sailor. When we mentioned that, the race being so long, they could probably bring along a small cooler of drinks & snacks B was ready to sign on the dotted line :) So, this morning at 11:30 my guys took off for the club to get ready for the race. I stayed at home, cooking soup for dinner, since grammie was going to come over, & doing laundry (it is still Monday...).

I headed over to the club & got there about 2:00, just as my guys were sailing past the club (I could see the number on the sail) on the leeward leg of the race. I said hi to a few folks & settled in with my knitting to figure out where they were in the fleet. I couldn't see any othe Snipes around & thought B & C might be in the lead for the Snipes. (There is a Brown Jug awarded to the winner for each fleet plus an overall Brown Jug trophy, with small keeper trophies for skipper & crew for 1-3 places in each fleet.) I thought it would be so neat if they took the fleet trophy for B's first race :) The Opti fleet was coming in just about then, the kids singing "99 bottles of beer on the wall" as they sailed in, to much hilarity (Optis are kid-sized boats, smaller than a sunfish, with a cute, gaff-rigged sail & very safe to learn to sail in). The Opti's had started first on a short course & had 2 races before coming in. B actually has an Opti (short for "Optimist Pram"- you can understand the need for a nickname) but enjoys sailing with his dad in the "big" boat much more than sailing on his own, so we don't push it... There were 2 Opti parents in the crash boat following the little fleet in & when they docked they came over to chat. The dad mentioned that C & B were ahead, & I said that, yes I had thought they were leading the Snipes. He said, "No, I mean they're leading the fleet- the whole fleet." & my jaw dropped. C & B were ahead of 40-some boats, the lead boat in the regatta. I watched them sail under the bridge & out of sight, heading to the next mark. Some time later a boat re-emerged from under the bridge & it was certainly a Snipe, but I couldn't see the number. As the rest of the lead boats came into sight I realised that this Snipe had to be my guys. They motored right along on this last, windward leg, toward the finish line, but then seemed to stop dead a few boatlengths from the line... I felt my stomach start to churn. I saw them tack, & then finally cross the line. As I suspected, there was a hole right where they had stopped & C had to tack to find enough wind to cross. But they did it. B's first race & they won the regatta!

C didn't tell B that they were in front of the whole fleet until after they had crossed, in case something untoward happened to their lead :) B was mainly focused on beating the other Snipes over the line & had an eagle eye out for them (he also had a squirt-toy shaped like a shark he was planning to use on anyone who got too close, but it had malfunctioned & wouldn't squirt :). When they crossed, C asked B if he could see any other boats ahead of them, then explained that they had won. He said B was stunned & then very excited. The race committee folks cheered, yelling B's name, when they finished, & so did the rest of the fleet as they followed them into shore. B congratulated each boat as it docked :) He waved madly at me as they came into shore & was so excited to tell me about the race.

The 2 of them put the boat on the haulout together, then B was lured away by sounds of the Opti kids playing foosball in the clubhouse, so he went off to play & C & I chatted with friends from the club while people were taking boats apart & rolling sails. We'd check in with him occasionally, since he tends to do better with the adults than with the kids (there's a lot of competition among the kids & the teasing can get out of hand). Later, he did report some obnoxiousness, but he handled it himself by playing just with the kids who were being nicer. The they put out the food & the party began. B was overwhelmed by the crowd in the clubhouse (it's pretty small), but we found a quiet spot to eat. He wanted some pizza, but it was sitting next to a crockpot full of meatballs, which set him ticcing, & he decided he didn't want any pizza. The kids went back to foosball pretty soon after eating, so he found sufficient distraction there that he didn't demand that we take him home.

The trophies were awarded to 9 different fleets, plus the overall "Brown Jug". B barely managed to carry the thing, it was so heavy. They also won the jug for the Snipe fleet. We get to keep these for a year & paint our boat # & date onto each jug. The keepers were mugs for both skipper & crew, so B has 2 new mugs of his very own :)

We left right after the trophies, since B was really tired (he'd been at the club for nearly 6 hours). He'd done a great job of holding it together all day. All the way home he kept saying "I can't believe I won the big trophy at my very first race!" in a wondering voice. I told him he has a lot to live up to now :) B decided to watch Reading rainbow until grammie came for dinner, then we had a quiet dinner with 2 very tired sailors at the table. B was having trouble transitioning to jammie time & asked to set off some fireworks (little ones, that do not fly into the air but are mostly pretty showers of sparks in the driveway), so C said "why not?" & this seemed to get B calmed down enough to transition to bedtime. He was very restless in bed, even as I was reading to him (he had a thought about Plussel & Minun- pokemon stuffies- getting hurt so we had him look to see if they were ok & they were...), & finally requested his ball blanket (kept ready at the foot of his bed). Within 3 minutes of pulling up the ball blanket he was snoring. A lovely & memorable day...

Sent "Over the Edge" by "Over the Hedge"...

Weeeelll... B really seemed to enjoy Over the Hedge, but in the aftermath of a very intense evening C & I are thinking that B is still having difficulty with the intensity of the movie-going experience. We avoided theatre movies from ages 5-8 because B was very likely to try to run out of the theatre if things got too overwhelming. It wasn't much of a sacrifice to forego the theatre experience (or expense). We just got the ones we thought would be good after they were released on dvd or vhs. When B was 8 1/2 he decided he had to see The Incredibles & did so well that we even saw it twice in the theatre. So, we tried Chicken Little & Madegascar last summer, & he was all right while watching the movies, but we noticed that B would have a delayed reaction to the experience. It's as if the surface humour would wear away & the actual anxiety behind the humour would get under B's skin. This certainly happened after seeing Charlie & the Chocolate Factory, which is the last movie we took him to see in the theatre... maybe last summer?

Yesterday afternoon B seemed in good spirits when he got home, & asked to play a game on the computer before dinner. He had finally found a lego site game earlier in the day that: a )worked on the mac, b) wasn't too hard, & c) wasn't too easy. He was delighted (at one point he told me, "mom, it's just so exhilirating!") & really wanted to get back to it. After about 20 minutes he called, "mom, I can't progress to the next level unless I invite someone to play (as in send a friend's email to them)- what do I do?" Warning bells went off in my head. We have very strong feelings about being used as advertising ploys (I won't take any solicitation by phone, not will I participate in those "canvass" your neighbour by mail charity things) & especially about our kid being used this way. I explained that we do not participate in these sorts of things, & why (he already knew, but hadn't identified this as a scam). B went ballistic... not at me, but at the lego folks. He sat & tearfully listed the many ways they had let him down recently: games that won't work right or at all on a mac, not updating the ExoForce site often enough, taking the bionicle stories to terribly violent new lows (he hasn't been able to finish the last 2 books & used to love them...) so that he can't enjoy them any more, & now trying to use him to suck a friend into the site. I said that the only thing to do was to let them know, so I searched the site for a feedback area, finally found, it, & sent them an email telling them how disappointed my son was & that they were violating our family values by requiring him to "invite" a friend before he could progress to the next level of the game. This seemed to help for a few minutes, but he couldn't get the thoughts & feelings out of his mind. He became distraught again & descended quickly into "stuckness". C announced that dinner was served, but when he came in the living room he realised that we were in crisis, so sat with us, adding words of support. I hugged B tightly, grateful that we had caught him before he couldn't be touched, & tried to validate his feelings & "talk him down". When he seemed calmer, I started asking him questions about the "Knight Ranger" he was holding (B has synthesised his Knight's Kingdom guys into "Knight Rangers" with very complicated back-stories). He quickly started telling me all about this Ranger & within 5 minutes or so was smiling & ready for dinner. Whew... We talked about Over the Hedge during dinner & they told me all the funny parts, but I also noticed a bunch of themes that usually trigger disturbing thoughts in B, such as animals being eaten or hurt, so I did wonder that he had taken it so well.

After dinner was a quick bath for B before friends arrived for dessert. Right before the bath I heard sounds of distress from B's room (C was up there, too) & decided to go up for support. B was frantically rummaging through his lego bins as C was running the bath water. He "needed" a guy for his bath but they weren't in one piece, & he was frantically searching for feet. I helped him find feet, then he was in crisis because one of the critters he wanted in the bath had a "light brick" & couldn't get wet. I set him up on the bathroom counter & told B that his weakness was water & that the guy he had just finished making was now safe in the water (B chimed in that he was the Ranger of water...) & bath time proceeded... But B descended into full freak-out mode when he got out of the bath. He barely allowed me to re-braid his rattail, then fell moaning, screaming, & rocking into his body pillow. I sat with him, trying to keep myself from touching him, since he didn't want me to, & trying to talk gently & keep him as present as possible. I was very aware that we had friends coming over in 1/2 an hour, but also ready to ride it out with him no matter how long it took. C was with us, too. We would occasionally ask B if there was anything we could do or change to reduce his distress, & eventually he nodded yes & started saying initials, which I just wasn't getting (it was "BP" but the "B" sounded like a "P" & vice-versa). He eventually spelled-out "B-O-D-Y-P-I-L-L-O-W", so we removed it (he was wrapped around it at the time) & he calmed down almost immediately. There was no indication of why it was suddenly a problem, but we did not ask... we just wanted B to feel better. (This morning C asked him & B said that all of a sudden it reminded him of his 2 1/2 years ago, first-ever OVD trigger, a very powerful thing, & he has no idea why it suddenly popped into his head in connection with the pillow... he seemed better disposed toward the pillow after talking about it). I went downstairs & answered the door, & B & C came down a couple minutes later. Ed & Newc, who are the people who would become B's guardians if anything happened to us (pretty neat- & brave- people, huh? :), brought a peach pie to add to our carrot cake. I made tea & all 5 of us sat down for dessert & a nice chat. C & B played checkers while we talked, & then B wanted to share some Weird Al songs with them, which they really liked. He was ok until C took him up for bed. After about 20 minutes I heard yells from upstairs & decided to go relieve C (our friends offered to leave then, but I thought C deserved some grownup time, so I told them I'd send him down). B was kind of upset again with thoughts, but agreed to have me read to him. I got out our dragon book & read for about 40 minutes. He was still awake when I left him, but calm & fell asleep on his own- perhaps listening to the buzz of our voices downstairs helped.

After our friends left, C & I tried to deconstruct the evening. C remembered that B has been known to seem to enjoy a movie & then freak-out afterward. He's even done it with movies viewed at home (the latest was Charlie & the Chocolate Factory, which I'd given to C for Father's Day... B began watching it obsessively & having massive tics every time he saw Agustus Gloop, but couldn't stop watching it until we put it away). I was thinking that, once again, the subtler, scarier messages had gotten through to B & fed the OCD anxiety. Somehow it had all gotten enmeshed with the lego site frustration as well, & he could never quite get the distressed thoughts out of his head.

Today B has definitely been ticcier than usual, worrying about Rufus & his Knight Rangers getting hurt (C & I suggested that their Knight armour helps protect them & B seemed to like that idea) & has done some majorly obsessive lego-ing, too. (There's a sound, a loud, rhythmic, crunching sound, that comes from B's room when he's obsessively rummaging through his lego bins, & that clues me that he's obsessing & needs some help.) C spent time this morning helping to distract B by playing with the lego guys with him (very elabourate story lines, all from B's imagination). Now C is off sailing & B has been watching PR's while legoing, which seems to be helping. I'll interrupt for lunch & Japanese lesson, too, which should be a good distraction. I'm hoping that he'll be able to let us know what the disturbing images are as time goes by, which seems to diffuse them. It does leave us with a dilemma when it comes to movies... but there doesn't seem to be anything in the near future that has tempted him, movie-wise, so we're safe (?) for a bit. All part of the growing & maturing process for our kid...

How do you carry your mole rat?

He ain't heavy, he's my mole rat? Ummm... :) Anyway, this is B's clever solution to the problem of how to have 2 hands free when playing computer games, as Rufus is usually stuffed under B's right arm & restricts his movement a great deal. I am more delighted that he's actually using 2 hands for something, because B doesn't usually think to use both hands & gets frustrated when he can't do things one-handed (one of the mom-tapes is "use 2 hands, chick, that's why you have 'em"- chick being B's nickname).

This morning's breakfast was unusually lively & fun. All 3 of us were eating breakfast together, which can only happen on weekends (or on vacation), but sometimes doesn't even happen then (the guys have been going off for early-morning sails & the like). B was singing a parody song by Weird Al (Addicted to Spuds) & ad-libbed perfectly "Why do I...have 2 plates?" as he was singing. We all cracked up. Turns out that C is not yet accustomed to B's breakfast independance, learned over the summer, & so they both had gotten him a plate. Later in the meal B was staring at me, singing Dare to be Stupid (a parody of Devo's Dare to be Human) so I asked him if he was trying to tell me anything... more laughter. I adore 80's music & am really enjoying B's renditions of these parodies of 80's songs, but I think it may be time to dig-up the originals for him to hear (it's hard to understand just how brilliant these parodies are if you haven't heard the originals).

It's raining like mad at the moment- Ernesto's legacy in the northeast US... (it is Ernesto, isn't it? I called it Elmer this morning, to great hilarity, but I knew it was an E name for a guy... C was imagining Bugs Bunny cartoons). C & B are off to a movie with a school friend & family. B hasbeen wanting to see "Over the Hedge" &, since he rarely angles to see movies in theatres, we have been trying to get out to see it. I was going to go, not really to see the movie, but for the company, but we called some church friends this morning & are getting together with them this evening for dessert & good company, & that's all I've really been craving (the good company, that is, although C & B did go out & buy a carrot cake... :), so I stayed home to blog, wait for my mom to deliver potato salad (long story) & perhaps watch my new Inuyasha movie.

Speaking of Inuyasha, B & I had a giggle last week in Japanese lesson. I had been varying my "sowarinasai" (sit down) requests to B with a variation I'd heard on the anime- "osowari". Usually when you add "o" to the beginning of a word or phrase in japanese you just make it more polite (hence "oshiri" being the polite form of "butt"... hee hee). I used it during our lesson & Tomoko began to laugh... I guess this particular term is used with one's dog... B cracked up when she told us- "I'm not a dog mom! (giggle)". It certainly fits with the context of the Inuyasha anime. Yesterday we hit the anime store on our errand rounds & he saw Inuyasha trading cards at the checkout. When he pointed them out I said "osowari!" & he just cracked up... don't think the checkout guy knew what we were talking about (in restrospect, though, he probably should have...). We have been working very hard on our adjectives in japanese & it's making it so much easier to make distracting conversation with B when we're out & about & he starts getting overwhelmed with triggers & being away from home (B's psychologist thinks the japanese helps because he has to use more thought to understand what I'm saying, which distracts & takes away the power of the overwhelming thoughts). When we were at the anime store B also read some labels in hiragana, which just tickled me pink. Time to learn katakana!

Tag, everyone! A new meme to consider...

I looked up meme at wikipedia, & now that I know what it means, I'd like to attempt to add to the sharing of cultural information...

I was thinking that one of the purposes of many blogs I read (& certainly my own) is to provide an antidote to the messages in the popular culture that autism is a "death sentence" or a "disease" & something to be "combatted". In an attempt to add weight to the opposition of these ideas, I'd like to propose a meme to describe at least 4 ways (or as many as you can think of) that autism has positively affected your life. This is not a Pollyanna proposition, or meant to elicit "lemons to lemonade" responses, but a challenge to look deeply into our lives. I may be presumptuous to propose this & it may already have been done (I've only been at this blogging thing for 8 months- exactly!), but I think it would be worth doing, to contribute weight to the proposal that autism is, essentially, just another way to be. So, to respond to my own challenge:

How autism has positively affected my life:

#1. ...my kid, obviously, is the most positive way that autism has affected my life. His amazing, quirky, beautiful way of perceiving the world & sharing his perceptions are essential to me. I wouldn't lose his autism for the world, for fear of losing who he essentially is. We will continue to give him the assistance he needs to accomplish what he wants to do with his life- but as much as possible (he is still only 10), he's driving the bus...

#2. ...through the other like-minded people I have "met" online, who give me information & support that I don't know what I'd do without. I'd like to single-out Zilari here, because she has opened windows into B's behaviours that I may never have caught. Our family is happier thanks to her insight & friendship- thanks!

#3. I look at the other families I know that are dealing with autism (in varying ways) very differently now that it affects me too. I feel more compassion (& less pity) & also feel the need to reach out, network, & support other parents as much as possible. I know how much my connexions with more experienced autism parents have helped me, so I want to give back.

#4. Learning about all the ways that autism affects people has taught me a great deal about human diversity & given me an appreciation of this diversity.

#5. Indirectly... I have finally worked through the writers block that has plagued me my whole life. If I did not have an autistic child, then I would not have started a blog, & I would never have written as much as I have in the past 8 months & come to feel so good about the process of writing (finally!).

I tag... anybody who feels up to the challenge & wants to do this. :)