Thoth returns... :)

Today was Ancient Egypt day for Brendan's class- the culmination of all of their research & creative efforts. They presented their work by inviting the rest of the school to a "wax museum" of gods & goddesses (all of them dressed-up, wearing the masks they'd made). They all had drawn buttons to push for info on paper, then sat in costume beside their statues, ready to talk to anyone who pushed their button about their god or goddess. At some mutually-agreed-upon time, the groups of kids decided to take off their masks & represent regular ancient Egyptians, & were ready to talk about their every-day lives as well.

So, here's Brendan as Thoth & as a regular, ancient Egyptian scribe.

And Brendan posing with his Thoth statue.

I left before the presentations (stayed to help Brendan get costumed-up & take a bunch of pictures of the kids :), so I can't wait to hear how it went!!

Meet Thoth :)

For the past few weeks Brendan's class at school has been studying ancient Egypt. They've been working in groups to make model pyramids, learning about what is believed to be the everyday life of ancient Egyptians, & also were asked to choose a god or goddess to do a research project on (he chose Thoth, the god of wisdom, scribes, & magic). Brendan has enjoyed this unit & was able to bring some resources from home for his research- one of my cousins married a man from Egypt & has sent Brendan books on Egypt & also pictures of her family in front of the pyramids- pretty cool! A couple of weekends ago Brendan found himself challenged by the homework, though... well, the fact that they had homework over the weekend (not a usual phenomenon :) was the first challenge to wrap his head around. He has very specific ideas of when & where homework should occur, & we are generally supportive of these ideas, since he needs his down-time at home very much. This is the first year since homework became part of life (in 3rd grade) that he (now in 6th grade) has been able to cope with consistently doing homework- big sigh of relief! So Brendan met the weekend homework assignment with mixed feelings, particularly since it was a craft project...

Brendan is one of the many on the spectrum who really dislikes getting his hands messy or gooey. His fine-motor co-ordination has come along very nicely & although he doesn't much like cutting with scissors or glueing things together, he will do it if someone sticks by him. I was really proud & amazed when he went along with the mask-making project at school- using plaster of paris strips on a form to make a mask of his chosen Egyptian god. He had drawn & cut out facial features, & then worked with a couple of his teachers to do the messy parts. I was there when they did it & watched him do it! He was just about maxxed-out by the gooiness of the plaster by the time he finished, & ran straight for the sink to rinse his hands afterward, but he did it :) The painting of the dry mask went better & he happily told me about the cool colours he choose for it after school one day. Again, hooray!

The weekend project was to make a statue, at least 12 inches high, of their chosen god. Brendan's first reaction was to opt out. It was an option, since his teachers are very reasonable about not pushing him too hard when it comes to homework (or allowing him to do it at school, rather than at home). Charlie told Brendan that he thought it could be fun & why don't they try doing it together? Brendan cautiously agreed... And so began an interesting weekend for all of us :)

They discussed options & decided to do a mixed-media project. They found a mailing tube that was already more than 12" tall, & then Charlie discovered that an old medicine bottle fit perfectly into the top... which led them to decided to make "Thoth as Pez dispenser :) They decided to make the head from sculpey, so I gave them total access to my sculpey stash, plus made them look at the Klutz sculpey book before going ahead. This helped them decide to make a tin foil armature first, since it would make the head lighter. They used a straightened-out paper clip for the beak (Thoth has the head of an ibis).

Charlie cut a circle out of waxed paper the same size as the top of the bottle to use as a template, so it would be the right size. They worked for over an hour on the sculpture, & then drilled holes in the lid & bottle (to wire the top in so it could be flipped off like a Pez dispenser) while it baked. I really enjoyed watching them work on it together, heads bent over various bits & pieces, discussion of how to fit things together, how best to smooth the sculpey, what colour to make the eyes :) By the end of day 1, the head was made & epoxyed to the lid & Brendan had discovered that he likes the feeling of working with sculpey. Hooray!

On day 2 it was my turn to get involved, since we needed to dress Thoth in the latest ancient Egyptian style. I brought down odds & ends of fabric & Brendan & I looked a pictures to decide how he wanted it to look. I draped & he critiqued, & finally we finished it off with a ribbon belt & a torque made from a string of glass beads Brendan had made. He was really pleased. So were we... on many levels. First, he hadn't opted out of a challenging assignment. Then... he had fun doing it! So did we :) And, mostly, I am always looking for ways to share the wonderful feeling I feel when I make stuff, with Brendan. This is not something that comes as naturally to him as it does to me, but the feeling of accomplishment is something that just makes me want to keep doing it, making things, experimenting with ideas & techniques & media. It was so lovely to see him enjoying himself so much while doing this. And... it was a great hit at school (especially the Pez... :). As I think of the summer ahead, I think we'll be doing more with sculpey- maybe this year he'll make beads to use for his holiday gifts!

Returning to the fray :)

Time certainly passes quickly, doesn't it?

Thanks to a timely sermon this morning at church (on the topic of Jonah, the call to make the world a better place, all the reasons we try to avoid this call, & why we should answer it anyway) I realised that I've been away from blogging for far too long, & need to jump back into this community. I've come to understand that part of the reason I took time away from writing & sharing was my participation in the search for a new minister for my church. Not only was it very intense & time-consuming, but so much of the process was confidential & I worried about inadvertantly letting something slip while blogging. But the search is over, we successfully called our new minister last month, & it time to get back to the discipline of writing. One thing that I did discover during my break was that I felt a bit of a relief to be out from under the magnifying glass of looking at (& writing about) my family & my life on an almost daily basis, so I'm going to try to keep that in mind as I find a new rhythm for writing.

So... last night Charlie & I hosted a meeting of parents from our school who have kids with IEPs & who are concerned about how the IDEA law has finally filtered down to our local level & will be making perhaps significant changes to our school next year. Brendan's school is a private alternative school with a well-earned reputation for doing a great job of educating kids with IEPs. About 20% of the kids at school (of around 100 total students) have IEPs & they are all integrated into regular classrooms. Of the 13 parents who met last evening, about half have kids in Brendan's class, & many of us have found this school to be our last resort for educating our kids, having either had bad experiences with our public school districts, or having been advised that the public schools couldn't provide the appropriate environments for our kids. The beauty of our school is that it's able to provide the "least restrictive environment" while also providing the (sometimes intense) support that our guys need, all in an alternative education setting, which means no standardised testing, the use of multiple & creative ways of getting the information across, hands-on learning with lots of field trips, plenty of outside time... I could go on & on :)

Up until now, our school has been able to hire & train their own consultant teachers by contracting with the school districts to provide these services to kids with IEPs from those districts. Paying our school to hire their own teachers actually saves the districts money, for various reasons, so everyone's had their needs met. Kids needing OT, speech, PT, etc. were served by providers sent to the school from the districts in which each kid lived, which meant a lot of people in & out of the building, but it basically worked. This past year, New York State's appeal of the IDEA law failed, & now it is illegal for private schools to use public funds to hire their teachers... Our school is too small to hire these staff without using funds provided by the school districts. Also, instead of having the district in which the chid resides provide funds & services, it's the district in which the school is located that administers all of this. On one level, this has worked well this year, since just one OT, speech therapist, & PT providing services for all of the kids in the school makes it much easier to communicate & co-ordinate space. Unfortunately, our school is located in the poorest & most disorganised school district in the area... it's the district that we actually live in & although the service providers have been top-notch, the administration is a whole other matter. Sigh. According to the law, as the State is interpreting, the district is required to allow parents & non-public schools to have a say in who will be placed in their facilities, but the reality has been anything but encouraging, with shell-games being played with who the actual district contact person is, calls unanswered, funds withheld (the school finally hired an attorney to work on this).

What we are anticipating for next year is that our present consultant teachers will be gone. Brendan's teacher, Cherie, has been with him since 3rd grade & knows almost instinctively what to do when he's having a tough time with tics or OCD moments, so that most of the time he misses little or no class time when they pop up. We shudder to think what will happen to him with someone brand new, no matter how well-meaning, has to take the time to learn how to help him along. Also, right now Cherie is able to float between Brendan & her other kids, using her time efficiently & effectively, keeping things moving along throughout the day. We have no idea how the consultant teachers sent by the district will be assimilated into the classroom. Will they send a different one for each child with an IEP that requires consultant teacher hours? Will they send one to work with all of them? How many hours will they actually be in the building? If Brendan's IEP says he gets 5 hours daily, what will happen to him when they're not in the building...? We do know that the district is not allowing any time on IEPs for the consultant teachers to actually consult with the classroom teachers. What's up with that?

The other issue is that not only will they be sending their own teachers into an alternative school with a very specific education philosophy, but they will not be assigned until the day before school starts. How on earth is our school to maintain it's educational philosophy if a portion of the teachers either don't buy-into it or don't have time to even learn what it is? Extra added excitement is that our school will not be supervising any of these teachers, so there's no recourse if the new teachers don't get or like the way we do things...

Hence our concerns & our meeting last night. It was interesting to meet face-to-face in a group with people, many of whom we've known on an individual level (or not- being the door lady I know a lot of the parents at school that Charlie doesn't). Some of the parents we know because their kids are Brendan's closest friends, but this was the first time we've worked together on any kind of advocacy. It was good to hear what the parents of younger kids at school are thinking, too, & to understand their concerns. Our school's director, Paula (who's also the parent of a college-age kid who went through the school system with an IEP), was there to update us on the "shape of things to come" & field questions & suggestions for responses. It probably goes without saying that people came with radically different concerns, from "how do we change this stupid law?" to "how do we get the district to listen to us?" to "how do we make sure our kid functions in school next year?" (that was our particular concern). It was comforting to share our stories, about our kids, struggles with the school systems, about why we've chosen this school for our children. Charlie & I shared our frustration with Brendan's recent IEP meeting, in which we were told (after 45 minutes of what we thought was a normal annual review meeting) that they were "not authorised to approve his IEP as written" (which is almost identical to his current level of services) because his needs were too high... The CSE chair suggested moving his 3-year re-evaluation from next fall to, essentially, right now in order to prove that he needs what we're asking for. (When the permission for testing form arrived last Friday, I had it signed, copied, & back to the mailman before he left the neighbourhood. They'll get it back tomorrow... this is how serious I am about my kid's services, thank you!) Our family has been slogging through the special ed system for 7 years now, so we're not so much worried as wary... We we glad to hear, too, from other parents that their kids' annual reviews had gone better than Brendan's.

In the end, we decided to work on the situation from a few different directions. One of the parents agreed to draft a letter requesting that the district comply with state law by allowing the school & parents to be active participants in the selection of the teachers to be placed in our school next year. We'll all sign this & a packet of the letters will be sent not only to the district contact person but the school board president & the superintendent of schools. Charlie & I said we'd head up the group looking into helping the school fund a part-time consultant teacher hired by the school, to co-ordinate the new staff & particularly to work with the oldest kids (Brendan included). We talked about strategies for upping the ante, if the district decides to blow us off :) I'm left feeling guardedly hopeful about next year. I am still frustrated that a federal law can work against the best interests of my child's educational needs. I feel angry that so many uncaring people have the power to make things difficult for him, to affect whether or not he'll make it to high school or college, for goodness sake! It's just idiotic. I am glad to be part of a group of people of good will who want to work together to make things right. It's a very good start...

Belated Happy New Year!

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

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

Highlights of the holidays:

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

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

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

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

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

A poem by Brendan...

This is what Brendan wrote for this year's curriculum night (open house) at school. We were blown-away when we read it... Our kid digs so deeply when he writes! I am so, so glad that we have made every attempt to make writing easy for him, by not trying to force him to rely on any one way to communicate, or insisting that his handwriting be legible, or trying to teach him cursive writing when all the other kids were doing it. Brendan has been typing, using scribes, & now vioce-activated software, since he was in 3rd grade. The result is a kid who has found his writer's "voice" already (at the age of 11!) and who responds positively to the writing challenges presented by his 6th-grade teacher.

Lately they've been concentrating on "pursuasive writing" & last evening's homework assignment was to imagine you're a pumpkin & try to pursuade someone not to buy you for Halloween. Brendan has been preferring to do homework with Charlie recently, with Charlie as scribe or with them taking turns writing. The giggling that drifted down the stairs yesterday afternoon was infectious. The kids were asked to use "juicy" words in this assignment, & Brendan's were, quite literally, juicy :) His description of his pumpkin insides were so disgusting that I was definitely pursuaded (not to buy!). How lovely to have a kid who loves language & writing so much! The bonuses of not having pushed any particular form of writing on him have been that not only does he find hand-writing coming more fluently these days, but that he pushes himself to do better without relying on anyone else to push him.

All in all, I learned an awful lot about my kid from reading this poem... and it's very good to see him from his point of view for a change!

Moving back into the groove...

Hi All...

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

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

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

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

Life phases...

So much has happened in the past, nearly 2 weeks since I last posted, so I'll try to capture some snapshots of what's been happening...

I'm still recovering from bronchitis & resting whenever I have a couple of moments. The nice thing is that, no matter how rotten I've felt, I managed to to what needed to be done & have some fun as well :)

Brendan & I have finished reading "The Dharma of Star Wars" as bed-time reading- I think it took us about 3 weeks to get through it. Brendan's ability to cope with the OCD, tics, & frustration have changed remarkably in these 3 weeks, & we're noticing the changes at home as well as at school. At school, Brendan's not being triggered as much by OCD thoughts, & when he is he can think about what to do about it much more easily than before. He's using his box only when necessary & he's told me that he's been practising his breathing when he's in there. What's really remarkable about all of this is that this is Brendan's most stressful time of year. Last year we had him seeing his psychologist twice monthly (rather than the usual once monthly) to forestall coping difficulties, since the two previous years, just at this time of year, he tried to "zap" himself at school (by putting things in electrical sockets) because he was in so much emotional pain. It's also possible that getting ready to go to Japan is channeling some of the end-of-school transition issues into thinking about our next adventure. But it's certain that the mindfulness practise is helping, too. At home. the biggest change is that we've been able to get rid of his evening dose of klonapin, which he used to need to help buffer him from overwhelming OCD thoughts at bed time. Now what we do, if the thoughts start getting to him, is set a "kekkai" (japanese for "barrier") using "ki" (life-force energy). I start setting it around his head & Brendan uses his own ki to meet it. I can feel when he's pushing at my part of the kekkai- it's pretty amazing. Brendan immediately becomes calm again when we do this & we're finding it helpful to do during the day as well, when the thoughts overwhelm him. I still can barely believe that we've been able to move to this technique & back off on the medicine. It really bodes well for the future :) The other nice thing about the mindfulness practise is that we've been egging each other on, which has been a nice way for Brendan to find himself on an equal footing with me. I'm still "the mom", but he can remind me to breathe, say when traffic's really hairy, & it's helpful to me. He's coaching me just as I've been coaching him for most of his life. I know he gets a kick out of that... & I'm definitely benefitting from the practise as well.

We said goodbye to Nobuko-san, our japanese teacher's mother, yesterday. She flies back to Japan tomorrow, but we'll see her in a few weeks when we go to stay with her in Japan. Brendan finally found the courage to say a few things to her in japanese & it delighted both of them. She seemed really fond of him & also charmed :) I became quite comfortable with her & really enjoyed sharing everything from dyeing with indigo to visiting a quilting shop (they don't have anything like it in Japan) to showing her my wedding dress, which I designed & crocheted all of the lace for (a blast from the past :). She has promised to teach me a type of tea ceremony that's performed at the table (rather than sitting on tatami mats on the floor) &, much to Tomoko's chagrin, happily showed me a very elegant way to pick up & put down my hashi (chopsticks) during a meal (this while eating lunch together at our favourite japanese restaurant). I was so happy that she wanted to teach me, & I can't wait to learn the tea ceremony!! Tomoko also let us know that the plans for visiting her nephews' school are solid, & that we'll be participating in an english class, plus observing another subject, & then staying for lunch if we like. Lunch in a japanese elementary school is supposed to be amazing- the kids serve it all themselves- so I think we'll take them up on it. Brendan & I have picked out the photos we want to use for a picture-book of his life here in the US, so all we have to do is set it up with english & japanese text & print it out. We plan to give it as a gift to the schoolkids we'll be visiting, to help them learn english & about life in the US.

Part of the end-of-school scene, always, is Brendan's yearly CSE. This year the special ed. co-ordinator at school requested to have all of the city students' CSE's at school, rather than downtown at central office, & they actually agreed! It makes things so much easier on the teachers & the school, since they can just hire a couple of subs to rotate through the classrooms as the teachers attend the CSE's. It always seems a lot friendlier to have it at school (previously only one of Brendan's has been at school & it was far & above the most productive), & this one was truly friendly... it was almost embarassingly so... Brendan's meeting was scheduled last, at 1:15, since the school folks thought we could use a full hour for his meeting (the rest were 45 minutes). Charlie had cleared his schedule to attend & both his speech & OT therapists had multiple kids at school who had meetings that day, so they spent most of the day there at meetings. In all there were 8 of us at his meeting, the chairperson & Team Brendan :) We all had the proposed IEP in front of us (thank-you, IEP Direct!- & Cherie, Brendan's consultant teacher :) & the only change being proposed was to provide him with a laptop with Dragon, voice-activated software, at the beginning of the year (& to withdraw the request for the alphasmart keyboard, since there are computers at school he can use if he wants to type something). Brendan's classroom teacher, Jen, has a lovely way of beginning with the positives- perhaps not the best thing to do when you are trying to make a case for services, but psychologically much more civilised. She was very clear that Brendan has some pretty impressive difficulties with functioning in the classroom & at school, but that he's also a delight to be with, that he's bright, witty, interesting, &- when functioning optimally- a very positive influence on his class & schoolmates. It's so wonderful to hear such nice things about your kid... Brendan's challenges were stated, too, but I have to say that his sense of humour permeated the whole meeting (even though he wasn't physically there), which was punctuated by explosive laughter at times. The CSE Chair was very pleasant & very impressed by the examples of Brendan's work using Dragon (part of the trial to see if it should be added to his IEP). She was also very encouraging to Charlie & me, & impressed by the work everyone at school has been doing with him. Needless to say, the request for Dragon was approved & there were no challenges to any of his existing services. We officially requested that Brendan have the same OT & speech providers next year, too, since they have been stellar, so... fingers crossed... After the meeting, as Brendan & I were leaving school, we popped back into the meeting room to see if the CSE Chair was still there, because I really wanted her to meet Brendan. She was there, & seemed quite delighted to meet him. Brendan was his charming self :) So- another CSE done & on to 6th grade! Even Brendan has decided that next year is going to be a better year... don't you just love it?

The other interesting thing that's happened over the past week is that Brendan has become a fisherman... He had a taste of fishing when his class went on their camping trip a few of weeks ago, & then had another opportunity this past Saturday when we hosted a school fundraiser at our sailing club. It was a sailing/picnic day & one of the families that signed up was that of one of Brendan's classmates, an avid fisherman, with an avid fisherman dad. Brendan spent the whole afternoon fishing & they even caught a fish that they couldn't identify (these folks are serious...) so they all hopped in the car & took fishie to the local tackle shop, where they had to put a call into authorities in order to figure out what it was (turned out to be a very rare bowfish- Charlie googled it & it was a very interesting read). On Sunday Brendan mentioned in Sunday School that he'd fallen in love with fishing & was invited to spend the afternoon fishing a local canal for carp with one of his classmates, whose dad is one of their teachers. He was in heaven :) It was a very odd afternoon for us, since we were strangely kidless... This is not something that happens to us very often, since there aren't very many folks who are comfortable enough with Brendan (& vice-versa) to blithely spirit him away on a fishing trip... We've known this family for quite a few years & the dad has been their Sunday School teacher for about 4 years, so it went very well. By Monday morning, Memorial Day, it was obvious that Brendan needed his own fishing tackle, so Charlie took him off to the tackle shop, conveniently open, & then directly to the club for an afternoon of fishing. As soon as the first fish was caught & needed to be thrown back (we aren't eating these guys- nobody wants to clean them!) they realised that they had no pliers to remove the hook, but a friend who was down for a sail came to the rescue & taught Charlie & Brendan a bit more about fishing. I think it's utterly cool that Charlie, who has never had any interest in fishing, is right there with Brendan, dealing with untoward bait situations & hanging on to wriggly, muscular critters like a pro... They ended up going twice on Monday (once after dinner, too)- true dedication :) Today they planned to go after school & pick up a net on the way, since there is always the possibility of catching a big one. They were gone for about 3 hours & got home just before dinner time. When I saw the net they'd bought I went into in hysterics- the thing could land a shark, I swear. Charlie insisted that it was the smallest one they had... Brendan got contact giggles from me, but defended his dad to the end. We are delighted by Brendan's new hobby- it brings him so many new skills, quite a few of them social, but also dexterity ones & definitely patience & coping with frustration ones. It will be very interesting to see where this goes...

So, just a week & a half left of school, with Music Night this Friday (I believe his class will be singing the parody song Brendan & I wrote a couple months ago at his music teacher's request :). Exactly 2 weeks from today we will fly to Japan. Charlie bought the Japan Rail tickets today, after consulting Tomoko about the best way to go about it all. We plan to take the Nozomi, the very fastest train ever, after our week in Tokyo, down to Kyushu to stay with Tomoko & her family. The pile of omiyage gifts to take to Japan is becoming truly impressive- & frightening, when we consider packing it all. We also ordered some japanese "en" (money) which will arrive by mail in a few days. I have researched & discovered that I won't need a special power converter for the computer while we're there, but I did discover that my present purse/shoulder bag is too small to carry the laptop in, so I'm off tomorrow to find a new one, plus an insulating envelope to protect the laptop. Charlie told me today that he thinks that the most difficult transition will be moving from getting-ready mode to "doing" mode. I am counting on the mindfulness practise to get me through... not long till all happens!

Getting ready for Japan, pt. 2...

Time has definitely begun to break the laws of physics. I looked & it's been a week since I last updated the blog, but it really doesn't seem like a week's gone by...

To pick up the camping trip story, Brendan had a really good first day of camping. He didn't enjoy most of the ropes-course activities, except for one that required a lot of problem-solving, which is right up his alley, but the course leaders were clued-in ahead of time by the teachers that some of the kids would find the activities very difficult, so they were allowed to sit out if they wanted to. Brendan decided to forego the craft activities afterward, in the late afternoon, & rested in the cabin instead (& I'd been worried that he wouldn't get sufficient down-time :). When Charlie arrived at around 6:45 pm, Brendan was happily playing a post-dinner game of soccer. There was a campfire & s'mores before bedtime & Charlie said that the boys were all asleep by midnight (the girls were up until 2:00 am!). The coolest thing about the day was that it was completely tic-free! On Friday morning Brendan tried fishing for the second time in his life. The first time, at age 7-ish, resulted in hysterics when he actually caught the fish. He was afraid of killing it... This time, once he discovered that they were tossing them back after catching them, he was very excited to do it. He wasn't as excited about putting worms or maggots (!) in the hook, but other kids & parents helped him out. He had a great time for a while, but Charlie noticed that it was taking on an obsessive quality after about an hour or so. By the time they broke for lunch it was nearly impossible for him to stop, & by the time he got to the dining hall he was in full, screaming tic mode :( Charlie managed to get him to the car & gave him Rufus, then he explained to the teachers that he would take Brendan home early (the rest of the group left around 2:00). They stopped for fries on the way home, & Brendan was calmer in the car, but the miniute he got home he was very unsettled. We talked about how tough transitions can be, tried to get him to eat some more, but finally he went into a major meltdown & we just had to ride it out... After he recovered, we watched Miyazaki's "Nausicaa" in japanese & had a belated lunch. The rest of the day- in fact, the rest of the weekend, happily, went very well.

One of the things Charlie & I realised last week was that Brendan has been having a lot more difficulty with OCD & tics over the last weeks, both at school & at home. When he saw the pediatrician for his check-up last week we also noticed that he'd gained enough weight that he'd probably outgrown the previous dose. So a week ago Wednesday we decided to up his seroquel dosage slightly. Now, a week & a half later, we & his teachers are noticing an amazing change in his ability to cope with the OCD. Perhaps not co-incidentally, I have also been reading to Brendan at bedtime from one of my favourite books, Matthew Bortolin's "The Dharma of Star Wars", & his budding understanding of buddhist philosophy seems to be giving him a positive framework for looking at the OCD & resulting emotional turmoil. Bortolin was trained as a buddhist monk by Thich Nhat Hahn, who is one of my favourite resources for buddhist spirituality, & explaining buddhism from the Jedi perspective is not only charming to us Star Wars fans, but keeps our interest :) I had been waiting on sharing this book with him until I thought Brendan had matured enough to really think about what we're reading, & now seems to be the right time. We've been able to talk about the suffering the OCD thoughts cause him & brainstorm ways to deal with them in a mindful way (described in the book as Qui Gon's "Living Force Mindfulness" :). Brendan has been actively engaging me during the day in discussion of ways to manage the tics with mindfulness practise (concentrating on breathing & what he's doing in the here & now & letting the thoughts pass naturally out of his mind without being critical of them). I particularly like the non-critical message, since Brendan often has a lot of after-meltdown distress from feeling bad about having the meltdown thoughts in the first place. The calm acceptance message is a very healing one. So between getting some relief by increasing the seroquel & finding new ways to imagine & deal with the OCD, Brendan has had one of his calmest & most enjoyable weeks at school this year. His teachers are so happy to have so much positive interaction from him :) Brendan most definitely has a positive effect on the group dynamics at school- we've gotten this feedback many times- when he's in a good place & not using his energy to just keep himself together. The unexpected side-effect of the buddhist discussion has been that I have gotten back in the habit of my own on-again, off-again mindfulness practise, & it's helping me a lot!

This past week has been unimaginably busy... Last Saturday we met Tomoko's mom, Nobuko-san, for the first time. They came to tea on Saturday afternoon, so I made scones & english tea ("ko-cha", as I learned from them). I'm trying to keep it in mind to do "american" things for Nobuko-san, to make it more fun for her. (Hey, when I'm in Japan, I want to do "japanese" things!) Nobuko-san speaks no english, so it was our first real challenge of speaking functional japanese :) Brendan was nervous, too, & mine was compounded by being sick with that virus. I felt as though all my 2 years of lessons ran right out my ears as soon as they came through the door, but Tomoko was there to translate, & I was able to say in japanese that I'd been a bit sick lately, which helped. Charlie was home from working Saturday morning, so we were all able to sit down to a nice tea after Nobuko-san gave us "omiyage" gifts from Japan. Brendan was very excited- she had brought him a "Kamen Rider Den-O" (our very favourite japanese tv series right now) action figure & a Jyuken Geki Ranger (the latest in the Super Sentai- aka Power Rangers- series, which we've also been watching online) mecha to put together. She said that Brendan's just like her older grandson, Shin-kun, the way he loves to put things together, which was lovely news because we're bring lots of legos for him as omiyage when we go to Japan :) My thinking is that Brendan will lose his shyness about speaking japanese while helping Shin-kun (who is 8) put the legos together. The good news about our first meeting with the very kind lady who we'll be spending a week of our trip to Japan with, is that I understood at least half of what she said, even if I did struggle to respond. I've seen her twice since then & my understanding has increased each time, so I think it bodes well... :)

Monday, Brendan had 2 doctor's appointments, & then we had a last-minute visit to my doctor as well... Charlie told me before he left for work Monday morning that my breathing sounded worse overnight & that I might want to have my doctor listen to my lungs, & I was smart enough to listen to him so I called. My doctor very kindly got me in at the end of the day (she has picked up a few too many of my asthma-related train wrecks to ignore this sort of info...) &, indeed, I had bronchitis. But- we'd caught it before I needed steroids- hooray! Brendan was pretty darned good about being hauled all over the universe (after the doctor, we had to stop & get antibiotics & also pick up some dinner, since there was no time to cook- Charlie actually beat us home). I got a couple of sushi packs for dinner, with the idea of making ramen for Brendan, & it's a sign of just how serious Charlie is about getting ready for Japan that he turned down the offer of a bowl of tomato soup with the sushi- sushi's not his favourite- but ate just that instead. I got a veggie pack (neither of us does raw fish...) & Brendan decided he wanted to try some, & didn't he just like the avocado ones! Go fig... So I guess we all qualify as a sushi-eating family now :)

Tuesday was almost as crazy with doctor's appointments (getting it all in before we go), but I did get some down-time during the day, to try to get over the bronchitis. Wednesday felt nearly impossible when I first got up. The plan was to run an indigo vat, to finish dyeing omiyage gifts & also teacher end-of-year-gifts (plus a few new ones for Brendan, who has outgrown all of his indigo-dyed shirts), plus Tomoko & Nobuko-san were coming over to "experience" the indigo dyeing, too ("aizome" in japanese). I was planning to make a simple "american" lunch of tuna & egg salad sandwiches, pickles, & tea... Plus there were the usual Wednesday chores, like changing the beds, running the dishwasher, taking out the trash... dealing with bronchitis... luckily, also on the list was a visit to the chirpracter & somehow her working on my very achy back (from coughing & tie-dyeing, I think) & concentrating on my mindfulness practise whenever I felt overwhelmed, put me in the right frame of mind to do everything that needed to be done. I had a great time! I was much more relaxed & the japanese came to mind more easily. Tomoko & her mom had bought t-shits to dip in the indigo, so they tied them in pretty patterns & really seemed to enjoy the process of dyeing. Charlie took Brendan to & from school, which is one of the things that made everything possible, & they stopped at a local children's museum on the way home from school & picked up some more fun gifts for the kids in Japan.

Yesterday I grocery shopped & had a meeting at church for which I made an "onigiri" (rice balls) lunch, but again, staying present & not getting fussed about still feeling under the weather made it a really enjoyable day. Brendan played outside for about 2 hours, & instead of coming in all over-stimulated, he was in a pretty good place when he came in right before dinner. The only untoward incident was that he ate something from the garden that he'd thought was lemon balm, but wasn't, & his tongue started to tingle. He brought in a sprig of whatever it was (a weed- nothing I recognised) & hyper-ventilated a bit when he realised that he'd might have gotten into something poisonous... but I kept the admonitions on the light-side. He was obviously not getting sick & hadn't swallowed anything (he spit it right out when it tasted funny), so I made him drink something & then promise not to eat anything from the garden until we've had a refresher on what's edible & what generally isn't. Fortunately, I removed anything not safe for kids from the garden when Brendan was a baby...

Tonight is Tomoko's graduation dinner, which Charlie & I are also going to. She & her mom are wearing kimonos! I'm really psyched to see them & give chatting in japanese yet another try. Brendan's happily staying home with our goddaughter, so it's a win-win. We're looking at a busy-ish weekend, with one of our last japanese lessons with Tomoko on Saturday morning, a church meeting for me (which I'll leave early for japanese), & then a school event in the afternoon. Sunday will be choir & church, then maybe actually resting in the afternoon :) Next week there's less appointment-action, thank goodness! All of the shirts for Japan will be dyed & ready to pack, all of the teacher end-of-year gifts will be done. Only 3 more weeks of school & then... we're on our way!!

Home alone... for real!

First of all, I will apologise in advance for any fuzziness in this post. It is virally-induced fuzziness & is temporary :)

Also, I finally have a reason to thank the autofill function on this site, since it made me realise that I'd already made a "Home alone..." post :) That one was after the first day of school last September, so I guess it sort of counts, but little did I know then what it really means to be home alone...

Or maybe, "little did I remember...", since, approximately a year ago yesterday, I had a premonition of what it would be like. The 5-6 grade classes at Brendan's school have a tradition of going to a nearby retreat centre/summer camp for an overnight before the end of the school year. Last year, as they & their gear all assembled in the parking lot to be distributed into cars, I realised that Brendan would be in this group in the coming year. I remember wondering what it would be like, or if he'd even go... He's not the overnight sort of guy. He's been to 2 sleepovers in his life- last year at the neighbour's birthday party & a couple years before at his best friend's house. OK, actually 3 of you count the night he spent at Grammie's when Charlie & I went to a B&B for our 10th anniversary, but he was only 2 1/2 & doesn't remember (Grammie does, though :).

As the campout plans filled the air, over the past few weeks, Brendan was definitely tentative about the whole thing. We wanted him to participate, of course, so Charlie tipped the scales by rearranging his scedule so that he could be one of the desperately-needed dad chaperones. The original plan had me going out for the day & leading some craft projects in the afternoon, & then Charlie & I switching after he got out of work. As time got closer Brendan really started looking forward to it, & even got into the buzz about who was doing what while there were there... As I mentioned in my previous post, he got sick over the weekend, so we kept him home from school on Monday & I picked him up at noon on Tuesday, all so that he would be healthy enough to go camping on Thursday. And he was :) What we did not foresee was my catching his virus & waking up Wednesday morning with a roaring sore throat... the cough soon followed. Brendan was slightly taken aback by the news that I wouldn't be driving him to camp, nor would I be there during the day, but being the sweetie that he is, he was more concerned about my health. When we assured him that dad would be there for the night, he was pretty close to ok with things. I let his teachers know on Wednesday that I was sick & received kind sympathy :) There were plenty of drivers & I managed to get the warp for a scarf on the school loom so that the kids could weave as a craft project (I taught Cherie how to weave a couple summers ago, so she could supervise). By the time Brendan got to school yesterday he was so caught up in the excitement that he lost all of his lingering worries & was good to go. Whew!

It was very, very weird to leave him, though. After leaving school I did my usual weekly shopping, & when I got home I realised that I didn't need to leave the house again for... days! I closed both garage doors after unloading the groceries. Weird. I kept remembering what Brendan's psychologist has been telling us about the necessary process of disconnecting, & really understood how difficult it's going to be for me. I guess it's really a good thing that I'm sick :) I was so tired by the morning actgivities that I went right to bed & slept for nearly 3 hours. I'd picked up some sushi for lunch & ate it at 2:30... normally Brendan & I would have just gotten home from school about then. I found the energy to do some more tie-dyeing (it's been pretty much an endless process lately, with boxes of dyes & clothing blanks arriving & being sucked into the 3-day process of applying the colours) & then rested for a bit by watching anime on veoh. Charlie called me right before he left work to go to camp. We both agreed that I'd have heard something if Brendan wasn't doing well- every adult there was packing a cell phone :) I imagined Charlie & his car-load arriving at camp & Brendan greeting him happily. (We found out on Tuesday that Brendan had volunteered Charlie to cook breakfast, tee hee, claiming that dad could make the best pancakes... Charlie was rather taken aback, not having made a pancake in some years, but decided to rise to the challenge. So after consulting with those who had gone last year, he loaded our griddle, potholders, & extra cooking oil into a big box & added it to his gear. What a guy! :)

I probably don't need to say how quiet the house seemed last night, how I got spooked by noises while I was in the shower, how I thought of my guys & wondered if Brendan had gotten the necessary down time in the afternoon so that he could make it through till campfire time... I had a nice, if quiet, evening. My favourite online puzzles, at the Conceptis site, always go up sometime Thursday evening so I did some puzzles. I watched some clips at TV in Japan, tidied up a bit... It turned out to be a good night to be alone, actually. Nobody woke up when I had coughing fits & Charlie wasn't disturbed when I got up a few times in the night. Since I wasn't worrying about bothering anyone, I probably slept better than I would have. I didn't get up until after 8:00 am... when I'd usually be at the door at school greeting everyone. Totally weird.

Charlie & Brendan will get home sometime bewteen 2:30 & 3:00... I can't wait to hear the stories :) I have more tie-dyeing to do, & more tidying up (Tomoko's mom is coming to visit tomorrow!!!). Oh, yeah, & I have to get well, too! I'll let you know how the camping went :)

Rhythms of life...

Well, I think that last post really took it out of me... kind of like I've been sucked dry of words. Life is still happening, though. Brendan's had a tough week, with many of the "issues" being very much related to the "gap". My sense is that he tootles along at school pretty well for a while & then, bam!, life expects a bit too much of him. Yesterday afternoon, when I went to pick him up from school, I sat in the parking lot & waited for him to come out (as usual) after waving to him in the 3rd floor window outside his classroom. I waited... & waited... finally I saw him again, with Cherie, talking. He looked rather miserable. I thought I saw him bang his head on the window & decided to get out of the car. Cherie indicated that I should come up. The scenario turned out to be: Brendan saw me in parking lot (at the agreed-upon time), went to get his stuff out of his locker, was intercepted by his classroom teacher & asked to do his pitching-in job (I guess things went late, because they're usually done by the time I get there), & Brendan freaked. Looked at from his point of view, I understand perfectly why he freaked. To my mind, you don't ask a kid with autism to delay end-of-the-day gratification (mom's here. going home!). To his teacher's mind, I suspect, a kid who attended really well in math class & had no trouble today in music class is not triggering "autistic" in her mind, even though she's completely on board with his autism & his needs... So she asked him to do what the other kids were doing. When I spoke to Cherie (Brendan's consultant teacher) this morning I told her that Charlie & I were thinking that one last team-meeting might be a good thing, just to get us throught the last 6 weeks of school. Brendan's changed so much since the winter break- it'll be nice to speak of these things & get everyone on board for where he's at now. In other words, let's get all of his teachers & therapists up to speed with the gap so that the great progress he's been making isn't undermined by escalating expectations. Cherie thought that a meeting was a great idea & will find us a time. The truth is, I read so much dreadful stuff in other parents' blogs about their schools' attitudes towards their children that I feel a bit guilty kvetching even a bit about things like this... Brendan's school & teachers are stellar. And part of the reason is that they're so open the the occasional tweaking necessary to keep things running smoothly.,,

One of the things complicating matters at school is Brendan's circadian rhythms, life-long ones, for up-times & down-times. The down-times make him particularly vulnerable to the OCD thoughts & tics, resulting in fatigue, & circularly, less patience with the OCD. He's in a definite slump right now, so it's been important to structure his downtime as true downtime- no demands. I had been thinking of doing some cleaning in his room with him (gotta make room for all the birthday legos) but realised that there was no way he'd be able/want to participate. I thought about it & realised that re-organising things wasn't going to upset him (re-binning the legos in a logical fashion so that they're out of the way & easier to find), so I went ahead & did it this morning. It was good for me, too. I've been leaving school lately rather depressed, worried about leaving Brendan & about some other things, too, so having a definite, ultimately satisfying job to do really helped. I'm looking forward to showing him what I've done, & seeing what he thinks of actually being able to walk through his room without tripping :) (I'm anticipating a positive response...)

After tidying, I moved on to blog-reading & found myself crying over Estee's recent post (guest-posted) called When What Seems Broken is Perfect (the link to that particular page wouldn't come up, so I had to link to the site instead). It made me think of some of my fears about how my child's life is seen & valued by those outside my family... Happily, I also took the time to listen to the Revolution Health podcast that Kristina posted yesterday at her Autism Vox site- a conversation she participated in (along with some other well-known autism blog voices, such as Autism Diva). It was a great listen & heartening, to boot. Well worth the hour-ish (I didn't time it) of time (I knitted some & braided a headband :).

The weather has been more co-opertive than expected (it was supposed to rain all day, but it's beautiful & sunny right now), so Brendan & I should be able to have what's become our daily walk. He's been quite enthusiastic about walking around the block with me for the past week, so we have good momentum to continue :) It's a great thing for both of us to be doing. We're looking at another really full weekend- japanese lesson, work day at the sailing club, then on Sunday church for all of us & a tea party (school fundraiser) for Charlie & me (Brendan is happier staying home with our goddaughter). It'll be good to have things like going for a walk to anchor us to everyday life.

Food chain...

Thank-you, Kim Possible. Not only have you given us Rufus, but you have given us a ready-made common vocabulary for Brendan to talk about one of life's most difficult stages- adolescence. Specifically, the way adolescents (or pre-) sort themselves into seemingly arbitrary hierarchies, which is what KP refers to as "the food chain". :)

Yesterday morning at breakfast, in a discussion aimed at getting at the root of Brendan's complete inability to remember to brush his newly-braced teeth after lunch at school (in spite of notes in his locker, lunchbox, & the re-location of toothbrush to his lunchbox), we came to the conclusion that part of the problem was that he & one particular friend begin playing their very imaginative free-time game (usually known as "The Pokemon Game) during lunch. It then spills over into outside time after lunch, & involves imagining themselves as various super-heroish characters & then acting out the drama on the playground. I'd gotten the clue about this being the "ish" (as KP would say) when I delivered Brendan's birthday meeting treat to school on Tuesday & was there for part of lunch time. Brendan & buddy were so immersed in the game that Brendan never noticed that I'd kissed him on the cheek & said goodbye... It's no wonder he sometimes comes home with part of his lunch uneaten. (I also have to wonder if getting completely immersed is the only way Brendan can participate in this game, since the friend he plays it with is also one of his major tic-triggers. Perhaps the intense focus allows Brendan to play the game & not get triggered...) In any case, I suggested that maybe he just explain to his friend that, until he's in the habit of brushing after he eats, they refrain from playing during lunch & wait until outside time. Brendan agreed, & we both realised that it meant Brendan sitting with other kids, since this friend is a juggernaut when it comes to this game & would probably have trouble switching gears if he was near Brendan. I told Brendan that I didn't want him eating by himself, either (lunch time is prime socialisation time, & socialisation is one of the reasons he's not being home-schooled). So, we talked about who else he could sit with... Now, I had noticed on Tuesday that Brendan & friend were the only 2 boys at the table during that lunch time- the 2 5th-6th grade classes had divided themselves up into a table of girls (+2 boys) & a table of boys, which was fine by me since I had some nice conversation with the girls as my kid utterly ignored me. When we got to imagining who else Brendan could sit by, he blurted out, "But mom, most of the other guys don't talk to me during lunch because of the food chain!" Thanks to KP, I knew immediately what he was talking about. Sigh. He then listed the hierarchical order that the boys had arranged themselves into, who kind of "floated" in status, & who had no status at all (he, his buddy, & one other kid who seems to kind of float through life anyway). He then did a comparative analysis of the girls' food chain as well. Not bad for an autistic kid, huh?

We then talked about how this all affects him. Brendan sees himself as a sort of free agent, not part of the hierarchy, but not really bothered by it either, except that it's inconvenient. He said that all of the kids in the hierarchy do talk to him at other times & he's played with them on the playground at times, too, & never felt picked-on. He's noticed that the kids who are trying to move into the food chain (but are not seen as "cool") get picked on, so he's decided to steer clear of this, although he's been known get involved to defend or comfort a friend who has been picked-on. His Pokemon game buddy exists on the outside of it all because he doesn't seem to notice that it exists, & we decided that that's why the higher-ups don't give him a hard time, either. It was comforting to know that Brendan has the savvy to see what's going on & decide just how much he wants to be involved in it, & that so far he's not being drawn-in hypnotically by the "cool' factor. I feel sad that the whole thing exists at all & remember acutely how much it all hurt when I was an adolescent.

Fortunately, Brendan's school is doing a great job of recognising the fall-out from food chain-related conflicts & is getting families involved, & has starting a series of socialisation workshops to teach the whole group some healthier ways of interacting. The consensus of his teachers is that the early intervention Brendan received for socialisation has really put him ahead of the game in this area- ironic, no?

At the end of our conversation, we decided that he might try sitting with the girls- there are 2 girls who also have braces & the 3 of them have been trying to remember to remind each other to brush teeth after lunch since Brendan got his. He's been with them since first grade, too, so they treat him pretty kindly. We shall see how this all plays out... "Will he remember to clean his teeth?" has receded on my list of concerns, though, after the food-chain conversation. Adolescence is here, whether we like it or not!

A happy birthday... :)

Thanks for the kind birthday wishes from commenters on my last post! Brendan had what seemed to me to be a magical day on his birthday. Magical because, in spite of pre-birthday jitters, he was less ticcy, less OCD-driven, less inflexible than usual, & so he really enjoyed the day & so did we! :)

I had been very concerned that we wouldn't get him to church after opening birthday presents (including a desperately-desired lego), but he was very mellow & only asked to bring his new Kirara (demon cat from InuYasha) plushie with him- no prob! He had a great time on the church computer while Charlie & I were in choir rehearsal, & even came up front with his Sunday School class during the service for a presentation (something he really doesn't like to do). We zoomed home after church, bringing our 17-year-old goddaughter with us, for a quick lunch & then off to the clubhouse to finish setting up for the party.

The party went off smoothly & with no difficulties at all from the guys I was worried about. Hooray!! My faith in humanity (& in the inner sweetness of even the most troubled child) was restored, for sure. There were repeated comments from the kids on how fun the activities were, & no-one balked at being asked to dress-up. Some of the guys came up with elabourate back-stories for their costumed characters :) Our goddaughter made a great sphinx :) & she was amazed by how easily the kids got some of the hardest riddles. The guys who were "cursed" to become the dragon seemed to have a blast:

(that's Charlie in the backwards jexter hat & Brendan in his mage robes :)

...they sorted-out who would be in the front of the dragon pretty quickly & went about uncursing themselves with good humour (they had to get someone to offer the dragon a drink of water without speaking :) The rest of the kids thought it was hilarious. The rate at which they whipped through the fairly challenging games made me glad I'd made them pretty difficult (yet not so difficult that our guys with motor-planning issues- & there were at least 4 of them there- would have too much trouble). The big surprise was that they got hung-up when it came to putting together the puzzle to make the treasure map. Go fig... but there were lots of adults on hand eager to join in the fun, & there was ping pong & foosball upstairs to make the waiting easier.

They finally figured it out & found the treasure box in the sandy, cave-ish basement of the clubhouse (top photo is of the treasure-frenzy :). I was amazed by how popular the mardi gras beads were- the kids, boys & girls, went around festooned for the rest of the afternoon. It really was time for cake & ice cream after that, & afterward Charlie was amazed by how all of the kids gathered around to watch Brendan open his presents.

Recently Joel asked What do you love about your autie?. Although there are many things that I love about my son, a few sprang to mind as I watched him at his party... Brendan greeted everyone personally as they arrived, setting the tone by welcoming them to the "quest". He participated unselfconsciouslessly in the activities, pretty much forgetting that he was the "birthday boy" & encouraging his friends to have fun. When he opened his prezzies (aka "loot" :) he was equally excited about each one, saying something complimentary about every gift he got (he told me later that he remembered not to mention if he already had something he was given, because he didn't want anyone to feel bad :). When it was time for everyone to leave, he stopped what he was doing & said good-bye, in spite of being really tired & distracted by all of the excitement. He was wonderful. Charlie & I were so proud & more than a little relieved that he kept it together so well. In the comments for my last post club 166 mentioned that he hopes his son will get to the point where he makes friends. I can think back to years when I've hoped & wondered the same thing, & I think it was age & maturity that finally did it. Our guys on the spectrum have a longer curve for learning the social stuff, but Brendan has definitely gotten to a place where he knows who his friends are & has a good sense of who isn't, too. I wasn't ever sure it would happen, but it has. Whew!

When we got home from the festivities we just let him lego, offering him various foods to keep him nourished, & ate scrambled eggs ourselves, for dinner. His room looked like an explosion at the lego factory right before bed- mostly because he & dad had moved all of the projects started in the living room upstairs, so that at least one room was passable. As he got a last few pieces put in place before bed, I discovered that the new bionicle Bahrahki containers are this really cool translucent blue & have decided to try & make a lamp from one of them... stay tuned :)

Monday morning we had some extra time before leaving the house because he was due at the orthodontist for the rest of his braces at 9:00 am- more lego time! This appointment took longer, but they said it went very well, thanks to his co-operation. He was definitely much cooler about it all this time, not jumping up & down excited (no duh!) but not whiny or unhappy about it all either. He refused the offered tylenol on the way to school & seemed pretty comfortable, pain-wise, although the fixed bite-plate was making him lisp a lot & he wasn't very happy about it. He had a fine day at school & bounced out to the car when I came to get him. He said that the plate was starting to give him some pain & that he'd take me up on the tylenol offer when we got home. I told him that we needed to start his birthday meeting treat after snack time, & then he was free to do what he liked until dinner. He got a few dvds for his birthday & was excited by some new doings at Adventure Quest that a friend had told him about, so I knew he'd have sufficient distraction from his face if he needed it.

At Brendan's school they celebrate birthdays by having "birthday meetings". On the first 2 floors (pre-k through 4th grade) all of the kids & teachers sign one big card & then the birthday child's family makes a treat to share with, usually, 2 classes of kids- about 25 people at most. They sing happy birthday & then the birthday child can make up a math problem or just ask the rest of the kids to guess their age, then they have the snack. Parents are not only welcome, but pretty much expected to make an appearance if they can :) The first couple of years we were really good & brought fresh fruit trays for snack, & the fun for Brendan was dyeing the dipping-yoghurt different colours with food-colouring. The past couple of years we've gone a bit more decadent, making candy sushi from rice krispie treat rolled around twizzlers, wrapped in fruit roll-ups & sliced into little maki sushi's. Brendan & I have really enjoyed setting-up an assembly line to make these :) Mom does the sticky bits & Brendan unwraps things... With the braces, though, we needed a new idea. We got that idea from the jello that Brendan's been eating since his first round of braces- jello aquariums. We'd seen this on Zoom a few years ago- carve little fish from apple slices & suspend them in a clear cup of blue jello. It takes some time, since you have to do 2 pourings of jello to set the fish properly (& I still had some floaters), not to mention carving all those apple fish (52-ish of them). Brendan & I made the first batch of jello together, then I set him free while I poured it into 26 clear plastic cups & set them on cookie-sheets in the fridge. A bit before dinner I started carving fish, floating them in lemon-water to keep them from turning brown. After dinner Brendan & I situated the fish in the set jello & then we made another batch of jello to top it off. (We ended-up using 9 boxes of jello for 27 cups.) We ran into a hitch while situating the fish, when Brendan started freaking out about eating the cute little fish. Sigh. I made him one without & Charlie undertook to calm him down while I finished up. He was feeling better, though, today when I brought them in at 11:20 for the mature, 3rd-floor version of the birthday meeting (everyone sits down to lunch, sings happy bday, & then eats snack with lunch). He was very proud of the jello aquariums & his classmates were impressed that we'd made them.

All in all, an exhausting but exhilirating few days. Brendan has turned 11 in style & he doesn't see the orthodontist again (barring the unforeseen) for 6 weeks!

New food, developments, & braces!

Hi. I'm back... Blogging for me seems to be a repetitive process of getting into "the groove" (keeping up with the flow of life & reflecting it in regular blog posts) & then periods of hiccuping through, trying to capture snapshots as life whizzes by... I am in hiccup mode these days & have found that, although it's uncomfortable to settle for posting snapshots of life, it's the only practical thing to do & I'm going to have to be satisfied with it. I have been thinking a lot lately about some of the deeper underpinnings of society's attitudes toward people who are different & at some point it's all going to gel in my mind when I actually have time to post it... but for now it's going to have to stay put. Sigh.

Brendan's been off school, yesterday & today, for family-student-teacher conferences. Yesterday we bopped out briefly in the morning to the asian food store & office supplies store to pick up some things. I had expected Brendan to want to stay in the car while I went into the asian food store because he usually can't handle the smell (lots of fishy overtones in a rather dank, warehouse-y building) but he was interested in looking for okashi (snacks) so was eager to go in with me. His only bad moment was running into (not literally) a cooked duck hanging in a corner, but he was able to go somewhere else in the store & didn't need to leave. We had to find non-gum or -chewy type snacks, which wasn't easy, but he found some konpeito & thought they would do :) (Konpeito is the bumpy, colourful sugar candy that the soot sprites are fed in "Spirited Away".) We talked about tolerance for those who eat meat on the way home in the car... which was interesting because Brendan decided that he wanted tuna fish for breakfast that morning. He hasn't eaten tuna for years. He has, however, assured me that it's ok if I eat fish or seafood around him, which relieved me considerably about travelling to Japan, since we're more likely to encounter fish & seafood there (Brendan can't bear to be in the room if someone is eating other animal products & even refuses to eat tofu products that are shaped like meat products, like veggie burgers). On Monday Brendan had earned a pokemon plushie from the new Diamon & Pearl series that is a penguin (whom he's named Linus) & yesterday morning he told me that Linus wanted tuna, so he'd like to have some too. I convinced him to hold off on the tuna until lunch time (I was trying to get out of the house early to run our errands) & so when lunch rolled around I made him a tuna salad sandwich. He loved it (so did Linus). So, I told him I'd make tuna onigiri for dinner & see if he liked that, too. Onigiri are japanese rice balls, a staple of box lunches there, but Brendan's never liked them with with any sort of filling & I'd been worried about finding any that he'd eat when we're in Japan this summer. (On a side note, according to our japanese teacher, the best place for take-out onigiri in Japan is the local 7-11 (yes, they have 7-11's in Japan). Tomoko says they take great pride in using the best quality rice & fresh fillings... something we're just going to have to experience, I think :)

We had a pretty mellow afternoon- we designed his birthday invitations using an image from his AQ online game- & when dinner came around I made tuna onigiri for Charlie & Brendan (I have really neat onigiri moulds that make the process go alot quicker & are less messy) with edamame on the side & tamagoyaki (rolled sweet omelette) for us parents (I had temaki sushi- yum!). Brendan ate all of his edamame first & then sat with an onigiri in his hand, breathing deeply. I encouraged him to "just take a bite & see..." & he told me he was preparing himself (new food is never easy...). Then, he bit into it. And he loved it :) He so rarely even tries something unfamiliar so I really savoured the moment. It's a lucky thing that we got him started early (as in, as soon as he started eating solid food) with japanese cuisine, or he wouldn't be eating it at all...

Today Brendan's school conference was at 8:50 am, so we got up nearly as early as a regular school day. Charlie got home from doing some catch-up at work as Brendan & I finished breakfast & we all hopped in the car to go to school. In preparation for the conferences all of the kids had done self-assessments & I always look forward to hearing what Brendan has to say. I also remembered that it was reading the assessment that had been partly-scribed for him last fall & seeing the contrast between what he'd been able to write & what he'd said to the scriber that led us to begin looking into voice-recognition software for him. That definitely came up in the conference today & we were glad to be able to report that we are finally ready to order the software & the laptop necessary for him to use it. (This will bring the number of working computers in our house to 5... deranged, but true. You would think that we might find a suitable computer from the array already available, but Dragon won't work with any of them for various reasons...) Brendan read his self-assessment (scribed for him, so it was full of interesting things) & commented on it as needed. One thing we all found interesting was that he prefers to work in groups of kids (as long as he doesn't have to do any writing), rather than alone because when he's in a room of students working on their own he feels an atmosphere of competition. When he's working with a group of kids he gets a feeling of co-operation. Charlie snagged a copy of Brendan's self-assessment to give to his psychologist, whom we were going to see at noon. When Brendan ran out of things to say he left the room & we did the grownup part of the conference. His teachers are very pleased with his current level of functioning at school. They moved desks around in the classroom a bit & found just the right place for Brendan's desk relative to the blackboard so that he can concentrate on his work without too many distractions. His big box has also helped enormously, since he can retreat to it & regroup when feeling overwhelmed. His teacher says he uses it a lot, but I didn't get the sense that he was in it during lesson times or that it was interfering with work time. He has also been much more fluent about telling his teachers when something is giving him a tic (triggering an OCD thought) so that they can modify things before he melts down from distress. So his days are less full of emotional explosions & he has more energy for school work & fun. We ended the meeting by thanking them very much for their flexibility & creativity in working with Brendan. So many of the things I've been reading lately highlight how lucky we are to have such a school in our community, which is not dedicated to serving kids with special needs but whose focus on alternative education provides him with teachers who are dedicated to helping him learn in the best way possible. They replied by telling us how much they enjoy Brendan as a person & how much he brings to the class. :)

The next event after school conference was the arrival of Grammie to stay with Brendan while Charlie & I went to see his psychologist for one of our regular meetings. I showed Grammie the chewy tubes that arrived on Monday, to be used instead of gum for Brendan's oral-motor/sensory feedback needs from now on... Luckily Brendan was on the computer when I did this because she was a bit puzzled by the tubes (& maybe my excitement?) & asked if they were like a pacifier. I kind of laughed & then asked her not to say that in front of Brendan... Later Charlie & I reflected on how well-thought-out plans could be destroyed by a single word & how lucky we were he wasn't around to hear the word "pacifier". Sigh. It also made me realise that I definitely live in an odd little world, where it's perfectly ok for nearly 11-year-olds to need chewy tubes... because, of course, is is ok (& necessary). We had a very productive meeting with Dr. M & he gave us some ideas for strategies to help Brendan transition to wearing the braces, particularly if he continues to have trouble keeping foreign objects out of his mouth (which is currently a problem). It's very clear that we will have to rethink how we do things at home until the transition has been made, & that Brendan will need more monitoring than he's required for quite some time. So he's not the only one who will have to learn to do things differently. Another thing we talked about was the way we've been approaching how to help Brendan learn the social skills he needs. Dr. M was pleased that we've evolved a strategy of talking about this sort of learning as getting "information" about things, rather than viewing it as coaching or getting help. He said that by speaking this as information-gathering we are not only piquing his interest (because he loves information) but empowering Brendan to learn how to do it himself, rather than teaching him to depend on others. It's a subtle difference, but affects how he views himself & his own capabilities. At these appontiments we always get positive feedback as to how Brendan's doing developmentally & it is always nice to know the ways that he's right on track for his age, rather than the focus always being where he's not doing as well... Brendan's recent interest in earning money is developmentally spot-on & is to be encouraged, we discovered :)

The final appointment for this busy day was with the orthodontist to begin the braces process (!). Brendan was a bit flakier than he's been at past appointments & had to be brought back to topic repeatedly (they did a thorough job on what foods he must avoid, how to eat others, & how he'll have to change his present methods for toothbrushing, flossing, & flouride rinsing). He was very pleased with the new water bottle he was given (as a treat :) & the dental mirror of his very own to use to keep track of the spacers that they put in today. He was really captivated by the mirror & was able to find all of the spacers with a little help from the technician. We checked-out using the chewy tubes to replace gum in Brendan's life (they hadn't heard of them) & after I explained how they work we got the ok... whew!! As it turned out, he only needed 3 of a possible 8 spacers, & although he complained that they made his teeth feel weird, he was barely noticing them by the time we left. I am worried by how he'll do once everything's actually in his mouth. We'll have to check his lips regularly to make sure the braces aren't abrading too much & giving him sores. His pain threshold is very high & I'm not convinced that he'll catch any abrasion before it's really bad. And we're really going to have to think about what he's eating & how. As I mentioned above, we're going to have to change our habits as much as Brendan will have to change his. It makes me realise what a creature of habit I am... On the way home we brainstormed a list of Brendan's friends that have braces already, so that he can ask them questions & get ideas for coping strategies. He's still pretty excited about it all &, I think, liking the extra attention :) Hey, if you've got to put up with all of this, feeling special is a nice perk!

Back to school tomorrow...!

Back on the roller coaster...

It's been an odd couple of days. Luckily, energies are running high so they've just been odd... :)

Monday afternoon Brendan saw the orthodontist. It's been one year since his initial evaluation, where we learned that he would definitely need braces to correct an upper overbite & lower jaw arch problems. Fortunately, no surgery will be required, just 2 years (give or take) of braces. Even more fortunately, Brendan's pediatric dentist was able to send us to an orthodontist who has experience with autistic kids, & it really shows. At our first visit, last year, Brendan was hyper-chatty & into pretty much everything. The response of everyone who dealt with him was to be charmed by his obvious intelligence & interest in the proceedings. The orthodontist spoke directly to him when it came time to tell us the results of the exam, & the whole place is really relaxed & quiet. When we explained Brendan's oral-motor issues & voiced our concerns about loose appliances we were assured that they could do the work without his ever having to wear a removable device. Very good news. Since Brendan's 12-year molars hadn't fully erupted yet they couldn't begin the treatment last year, so they told us to come back this March. The thought of Brendan being done with braces before he even enters high school is very exciting to us parental units :)

Brendan was psyched to go back to the orthodontist this past Monday. He really liked the people there & remembered the doctor's name :) He was just as hyper & chatty & they were just as relaxed about it. After the exam we were told that Brendan was ready for braces. Whoo hoo! :) (Later in the day I asked him why he's so excited about getting braces & he said that it "was something new" & that it "would be a challenge"...) While we were there we consulted the doctor about Brendan's reporting another loose tooth, even though we'd thought he was finished with losing teeth. I was very nervous because Brendan is extremely aggressive with loose teeth & I could envision him working away at a permanent tooth... It turned out that this was, indeed, his last primary tooth to come out (we'd miscounted) & Brendan was told that it could take up to 2 months to come out, at it's present stage of looseness. This guy doesn't know Brendan, though... The good news was that it won't affect the schedule of getting braces. So, we got the list of suggested payment options (of course ) & I made 3 more appointments while they took Brendan upstairs for xrays & impressions of his teeth. He bounced off after the technician chatting away. I was a bit worried about the impressions bit, since I've had this done & it can be unpleasant (I felt like the goop was going to run down my throat) but Brendan came bouncing back about 20 minutes later, all excited about the possible uses (other than dentistry) for the alginate (the goop's real name...). He's thinking that encasing fleeing miscreants in the stuff would be the "havaheart" trap version of catching criminals.

We're all going back (dad, too) next Wednesday for the pre-treatment meeting, & they'll also insert spacers to get him ready for the bands. They will also repeat the do's & don'ts & explain how he'll have to clean & floss (he already flosses) with the braces on. The biggest issue I can see is that gum will be forbidden. (When I told Cherie, his consultant teacher, about this yesterday morning she kind of gasped.) Brendan gets significant deep pressure feedback from chewing gum, plus it seems to prevent him from putting other, less appropriate, things in his mouth. Sigh. He had been using a chewy tube a couple of years ago while watching tv at home (never at school) but then stopped abruptly & I never really found out why. I brought it up a few weeks ago, when I found him chewing on a lego, but he said he wouldn't use it. I brought it up again yesterday afternoon, since the gum ban is starting to sink in, & he was more interested in the idea of a chewy tube then. So I looked at them on the Integrations site & found a couple different kinds that Brendan thought he'd like to try. One kind acts as a kind of pencil-topper, which I thought would go over better at school, & it even has little terry-cloth covers to catch saliva & give a different sensory experience (Brendan liked the idea). He'd also been telling me how it would be cool if they were flavoured, but the closest I found was scented ones (chocolate & the like) so he said he'd try them, too.

The other impetus for getting chewies back in our lives was the end of Brendan's schoolday yesterday... He had called me around 1:00 all excited because he'd lost the loose tooth (remember? The one that was supposed to take 2 months to fall out...?). When I got there I was surprised to see that he was sitting away from the rest of the class (around the corner but still within earshot), who were having music & seemed upset. His music teacher came over & explained that Brendan had been asked to remove himself from class for spitting on another kid. I was rather taken aback because Brendan has never had much trouble with spitting before. Brendan was really upset with himself & just this side of meltdown, so my priority was to get him home & then try to sort things out. His teacher said that things were ok, he understood that Brendan hadn't meant to disrupt things, but Brendan was not able to forgive himself for his lack of judgement. (The teacher has since asked to meet with me tomorrow afternoon, which was kind of funny because I had told Cherie just this morning that we need to sit down with him & explain more in depth what's going on with Brendan...) I barely got Brendan out of the building without a meltdown, he was so upset. He didn't calm down at all in the car & was on the kitchen floor in meltdown mode when his nose brushed my sleeve & we both made a run for the tissues, since he'd snotted my sweater & his face has gotten smeared. Before we knew it we were laughing uproariously at this & he was fine. Once he was in a better place I decided to try to sort things out piece by piece, so I first asked him why he was spitting... I guess there were a couple of issues, one being that he had a paperclip in his mouth (!) & had to spit it out. Another was there was a bad taste in his mouth (from the paperclip perhaps?), & then finally it became a tic & he felt he had to spit. I explained to Brendan why people freak out when "spit happens" (spread of disease) & explained that, if he feels the need to spit, he should excuse himself & find a sink. I asked him to imagine spit=sink, so that it would become an automatic reaction over time. Brendan told me that he thought the kid who'd accidentally gotten the spit-out paper clip on his shoe was over-reacting & when I checked this out with Cherie this morning she agreed that this was a good possibility. Then we tackled the paper clip in his mouth... I asked him to imagine getting a paper clip stuck in his braces. He made a face & decided that it would be bad, & then I told him I'd find him some chewy things to use instead of paper clips & the like. The last thing I tried to address was his over-reaction to the whole thing. We talked about how embarrassing it can be to be called out of class, & also that we know that he's not going to remember appropriate behaviour all the time, but that he needs to cut himself some slack & allow himself room to make mistakes & learn from them.

Last evening, when Charlie & I talked about it all, we decided that his lapse in good judgement & over-reaction was very likely due to the decreased dose of seroquel. Sigh. We've seen small signs over the past couple of days that he's just not coping very well with life. Episodes of screaming because the tics won't let him alone (literally) & his not being able to do things like lego because it's not diverting enough & the OCD starts freaking him out. So we decided to resume the 50 mg twice daily (we had reduced his evening dose to 25 mg 2 weeks ago). It looks as though he's just going to have to outgrow the seroquel. From what we've been told, as Brendan grows & matures, he'll be able to take more cognitive control of the OCD (& he already has), plus the Tourettes may back-off as well. The main thing is that he have "a life" & not spend large amounts of time terrified or paralysed because of the OCD & be able to do the things he likes & wants to do.

Charlie usually takes Brendan to school on Wednesday mornings & either goes to work (just for the morning) or does errands & comes home. Today I accompanied them so that I could get Cherie up to speed on yesterday's music class doings... She was surprised & distressed when I told her what had happened, because they (the teachers) had been meeting right across the hall, & Brendan's classroom teacher, Jen, kept going out to see if everything was going ok. It all must have occurred right at the end of class. I told Cherie how we'd decided to handle the spitting & all about the chewy tubes, & she told me that one of Brendan's school friends had just started using a chewy tube at school, which was a great relief. I also mentioned that we're going to have to do more with deep pressure, & we both realised that we're having trouble getting him to accept it when he's really upset. I had used it to stave-off a meltdown over the weekend, when Brendan was just starting to get agitated, & Cherie had had a similar experience last week in gym class, but he won't let us do it when he's in meltdown mode. I mentioned that I'm thinking of making him a "shoulder pal" - a weighted object that he coulld wear over his shoulders at school to give him more consistent sensory feedback. I mentioned it to Brendan (I had seen one in the OT catalogue) & we talked about making it look like one of his pokemon, then he could wear it & have it be kind of fun. He said he might wear something like that at school... Cherie & I brainstormed some, too- she said that if there was a beanbag component (like the head or the tail) he might like it because she's seen him play with beanbags. I was thinking that making it out of fleece might make it fun to touch & pet, too. The main thing is to make him want to wear it... I will definitely have him help me sew it when the time comes. He's been bugging me to do another sewing project, so I'll bet knowing he's made the shoulder thingy himself will make him want to wear it :) Stay tuned...