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!

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 :)

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...