Sunday, May 28, 2006

Things I've noticed...

Happy Memorial Day holiday to those in the US :) C's parents are visiting from Pittsburgh for the weekend, so B has all of his grandparents in town for the weekend & we'll be together tomorrow for an indoor picnic. B had Friday off school & I really noticed a difference in his ability to cope with the change in routine, compared with the last school break in April... For one thing, B is doing a lot more on his own- creating his own Pokemon cards & working on a set of lego vehicles/bases/creatures to go with a story he's been writing, so he doesn't need my presence nearly as much. This means that when we do things together I'm not burnt out, so we're both having a lot more fun! We had quite a few chores to do on Friday: swiffing & spot-washing the kitchen floor, wrapping presents for a birthday party on Saturday, ironing his HP robes for the same birthday party, baking bread, making pizza dough... the list just went on & on. B cheerfully assisted me with some of these tasks, so we had time to bake shortbread as well & that was a real treat. The behaviour changes that are allowing B more "free" time (free of overwhelming OVD thoughts) seem to be developmental, since he's not necessarily having less trouble with the "thoughts" but is able to verbalise them to us so we can then deal with them more quickly & permanently. He's better able to tell us before the thought becomes overwhelming, too, so we can discuss it casually & find out what B thinks would help to get rid of it. Lately his hands & feet have been giving him "thoughts" so I try desensitisation- holding the offending appendage & telling B how wonderful it is. He'll often get ticcing at first but then it eases-up... or, if not, I bring Rufus into the conversation to distract B with something funny. So far this approach is working.

Another thing I noticed was how well B tolerated the big birthday party on Saturday. It was mostly kids from school, which helped, but it was a combined party for 2 brothers, so there were probably 30 kids there & the attatched adults, too. It was semi-organised chaos with lots of food & drinks laying around, which usually spells trouble for B, since he's not supposed to have too many fatty foods like potato chips, due to his medications. It was a Harry Potter-themed party, with the activities being the TriWizard Tournament from "Goblet of Fire", so B wanted to wear his nearly-outgrown robes that I made for his Halloween costume 4 years ago... C & I have Dumbledore & McGonagall costumes, so we wore those too (just to get into the spirit of things :). When we first arrived, B noticed that he was the only kid wearing robes & wanted to take his off, but I was not in the tmood to carry his robe around all day, on top of wearing my own, & so he left it on, which was good because the birthday boys soon appeared with theirs on, too :) The first of the tournament events was catching a bouncing plastic egg on a trampoline, which B wisely opted-out of (he did bounce on the trampoline later, with dad spotting him). The second was racing through a big, inflatable undersea-themed bouncy thing (like you see at carnivals), but B only went through once because it was too smelly inside. After pizza, etc, & birthday cake, the last event was a game of freeze-tag with goodies handed out to all at the end, which B really enjoyed (he loves playing tag). The whole party was noisy mayhem & I think most of the kids had fun... B does not like noise or mayhem, & did an awful lot of unsupervised eating (sigh- although he did check in with me on drinks because he worries about caffeine... ), but he did tolerate it all very well. The older birthday boy is someone B considers a friend & came to B's much smaller birthday party (in other words, this kid was enough of a friend to make the cut :), so I think B was aware that his presence at the party was important to his friend. It wasn't until we were driving home & B was processing the noise & confusion & tiredness that he started complaining that he didn't really like being there. I was really impressed, in light of all the parties B has spent cocooned in dad's sweater (while dad was wearing it) because of the noise. It feels to me as though B is beginning to be able to tolerate social situations much better in general. This feels positive to me because B likes people & likes meeting new people, but up until now has had trouble tolerating situations where he might meet new people. Plus there's the birthday socialisation that is part of kid-life. I have never made him go to any party he's not enthusiastic about, even though he's missing-out on the bonding that kids do when they share experiences, so it feels positive to me that his experiences of these mixed-bag events are less negative than in the past (he was definitely looking forward to this party). It also underscores for me how important it is to make his own birthday party a smaller, less chaotic (we try... :), & more focused event (see early April for this year's party report :). Then B really does have fun & can share his idea of fun with his friends.

B did pretty well last evening, post-party, after having a bath right when we got home & a late-ish supper with his visiting grandparents (who came to the party as well). Unfortunately, we were up with him at 2:30-ish because B was sick. The good news- he hit the trash can instead of the bed! Another sign of maturity for sure... He's better today, with no lingering ill-effects & will probably go sailing with dad & granddad later this afternoon. :)

Thursday, May 25, 2006

En garde!

While grocery shopping this morning I was startled to see t-shirts commemorating "J-Mac"'s basketball achievement, with his picture & the date it happened. As I perused the shirts, I was appalled to see that they had the words "Fight Autism" at the bottom as the take-home message... Was his accomplishment an example of "fighting autism"? I don't think so... I think it's a very good example of someone working with their autism to achieve something others thought not possible. All in all, it was depressing to see this sort of propaganda publicly trotted-out by people who really don't know what they're talking about or know that it's offensive at all... I am contemplating offensive action myself- we'll see...

The reason I entitled this entry "En garde" was to commemorate a much more positive achievement- B took his very first fencing lesson yesterday :) B has been at odds with various martial arts since he was in kindergarten & encountered a bunch of "karate boys" in his class whose parents thought giving their 5-year-olds karate lessons would teach them discipline... what it did teach them was how to kick other kids, particularly those who did not take karate lessons :( B was not impressed by this at all & I was bummed because I did hope he'd get into martial arts at some point, for the discipline, yes, & the philosophy, & the many physical benefits to a kid with motor-planning & proprioceptive difficulties. Sigh. Even his fave babysitter's taking Aikido & our youngest goddaughter's getting her black belt in karate didn't change his aversion to martial arts, although he softened up a bit this year in gym when they were doing a bit of Tai Kwon Do & actually participated. So, C & I were nonplussed but pleased a few weeks ago when B mentioned that he'd like to try fencing lessons. C has a family of patients who run a fencing school & who had already invited him to bring B to check it out, so we knew where to go. When C called to make the appointment he mentioned B's AS, OCD, & Tourettes- mostly so they would be prepared for his lack of co-ordination & tics. B knew about the appontment for a week & never wavered once, which was a very good sign. Yesterday we took him after school for his first lesson...

We got there a little early & B was able to watch the student before him, an adult with some skill at fencing already. I was not really aware of how closely B was observing until it was his turn. He shook hands with the instructor & endured some good-natured comments about his long rat-tail, unusual height (for his age), & broad shoulders without any tics or aversive behaviours. (I made sure after the class to underscore the good-naturedness of the comments, since B can be very sensitive about his body, & observed myself that B & the instructor have similar physiques, which might mean that his will be good for fencing...) He went into the big fencing area, full of lines marked on the floor, & began his lesson while C & I watched through a big, glassless window. The instructor began with the en garde position & told B that it would feel weird at first, but his muscles would get used to it with practise. B then learned to advance & retreat, trying to keep his knees bent, feet in a certain position, body straight, & shoulders relaxed, leading with the front or back foot depending on the direction he was moving in. Only once did the instructor ask B to stop looking at his feet, & only once did he ask B to let him finish what he was saying... to which B replied "my mouth sometimes just goes off" (C & I were amazed by B's self-possession & insight...). Then B learned the motions for thrusting & lunging & they practised them over & over, making a game of it. Occasionally B would mention something he'd observed the other student do, appropriately, & I was glad that he'd been able to observe someone else before his lesson. After 15 minutes of practise, my kid was ready for a mask & foil... the instructor explained the parts of the foil, how to carry it safely, how to manage the mask & gloves, & B just did it all without any problem. I had been worried about the mask because B won't even wear a Halloween mask... but it was no big deal other than how to get it on & off properly. The only major snag they hit with the foil was that B didn't actually want to hit the instructor in the chest with it as instructed. So, he took the protective vest off, put it on B, & poked him a few times to assure him that he wouldn't be hurting him if he lunged at him with the foil. B was able to do it then, & they practised lunging for the rest of the 1/2 hour lesson.

I felt the most wonderful glow watching B's lesson. B tolerated so many things that would normally trigger him repeatedly, & only ticced once the whole lesson! He focused beautifully & found his body responding very well to these new demands. He also was able to answer many of the questions the instructor put to him, & listened when he was told that he didn't need to apologise every time he did something wrong (something he's obsessive about at home...). I saw a side of B that I rarely see & it was a delight. Plus- B loved the lesson & wants to go back. He asked me this morning if we could practice his advancing & retreating at home & I assured him that we would, so he'd be able to make progress before next lesson :) This is the first physical activity that B has felt confident enough to try & been committed-to enough to risk learning (as in not doing well at first & then getting better). B does this routinely intellectually but rarely physically (I can think of passing the deep-end swimming test, but that's about it...). It was splendid! He's growing up!!!

Monday, May 22, 2006

What makes B tic...?

... just about anything & everything these days. There is no way of predicting what or when something will trigger the OCD "thoughts" & send B in a frenzy of shoulder-jerks, vocal explosions (the sort of noise kids make when they are "exploding" something while playing), & sometimes violent gagging noises. Although the tics are less frequent at school, B is engaging in other stress-reducing behaviours there, such as head-banging & ripping his fingers with tacks (for which we've put a pretty effective strategy in place that allows B to earn Pokemon cards for each tack or paper clip he turns in). When B & I went to see his psychiatrist last Tuesday afternoon, C had written-up a note summarising his thoughts about what we've been dealing with as a family for me to share with her & I really like how he phrased it (explanatory comments are mine):

We are working hard:
* Preventing emotional breakdowns ("Umm, umm"- this referring to how we cope with B when he's "stuck")
* Keeping physical safety (because of the head-banging & difficulty going through doorways, which leads to more head-banging, plus the tack situation)
* If I prevent head-banging he screams "You're killing me" (B did this at church a couple Sundays ago...)

He is working hard:
* Preventing emotional breakdowns (he's using his words much more than ever before)
* Tacks & fingers (he's been ripping his fingers with tacks in an attempt to cope with the stress)
* Head-banging (another attempt to control his distress)
* tics

Can we make anything easier??

Both C & I were not interested in raising B's medicine doses as a response to the current behaviours, since we felt that behavioural methods are still working, however, B's psychiatrist had some other concerns to share with us... As it turns out, B's recent blood tests showed that his triglyceride levels are rising higher & higher, which concerned her very much. She was planning to contact B's pediatrician about it & asked that we repeat his fasting blood test the next day, to confirm the results. In light of the increased tics, she strongly recommended beginning to transition B off of the Seroquel & onto Abilify
(aripiprazole), which is in the same family but appears to have no affect on cholesterol & weight-gain in those who take it. B had also gained 3 lbs. since our last visit, so I agreed that this is the time to start slowly making the change. We added 5 mg. Abilify (which we have to call "pip" in front of B because this name makes him tic...) to his morning medicines on Wednesday, to see if it will help calm the increased OCD/sensory overload difficulties. Until we know how it's affecting him we won't mess with the Seroquel... this kid still has 3 more weeks of school!

The main effect we've noticed is that it's making him sleepy earlier in the evening but then he's waking up much earlier in the morning... sigh. When we do things with him to keep him up 'till 9:00 pm he sleeps later, so it appears that we'll be able to manage this "blip". We haven't noticed much effect on "thoughts" & tics- although B is definitely getting better at telling us what's making him tic, which allows us to "pull it out of his head" & talk about it. For example, sometimes I'll ask him if we can change something in his environment that's making him tic & he'll give me a cagey "it would make things worse to remove it..." answer. Lately, he can tell me that it's, say, his feet that are making him tic (or his thumbs, or his left hand). I have found that talking about it helps- I'll hold the offending foot & tell him how great it is, & he'll start ticcing but soon calm down & stop entirely. He's also gotten better about meat & meat-like things (like veggie corn dogs) & that was the result of talking, too. I explained the balance of nature to him & that some animals might starve to death if they were not used for food, especially since so many of the predators have been killed by humans (OK- I know that this is not the most balanced picture & ignores completely the way humans often inhumanely use cattle & chickens as food animals, but my goal is to allow my kid to make a balanced choice about what he eats, not one driven by horrific OCD "thoughts" & fears... & yes, I am a vegetarian, but I still want this to be his choice & not something imposed on him). A couple of days later B told me that he thought it was good that humans are omnivores, & soon he was able to hear the word "meat" without ticcing, & eat his veggie corn dogs again.

At the risk of sounding looney, we've developed another way to help us all cope with B's constant & unpredictable tics... we've made a sort of game of it. It started one night at dinner when we were discussing what to make this past Saturday evening for a special dinner with my visiting aunt & uncle from Ottawa. I suggested lasagna, which set B off on a major tic attack (he doesn't like the smell of lasagne...). The next thing C mentioned also set B off, which struck us a funny (for some reason- maybe you had to be there)... so I started saying random things like "shoe" to see if B would tic. He got this sweet little grin on his face & proceded to tic no matter what I said, but they were obviously fake tics, whcih cracked everybody up even more.
We've played this "game" a couple of other times when the tics have been out of hand & it's diffused things pretty nicely. Go fig...

ETA: B & I saw his psychologist, Dr. M, today & told him about the "ticcing B off" game (that's what B called it :) Dr. M was actually delighted... he said it's a good way to diffuse the tics & their triggers... Go fig... :)

Plus, on the way out of the office, B told me that he saw another kid who he thought might have Tourette's... "I saw him ticcing, mom!" "It's nice to know you're not alone, isn't it, B?" "Yeah, it is!" :) :)

Tuesday, May 16, 2006

End of year blues...

With 3 1/2 weeks of school left, B is having an increasingly difficult time holding it together. As I mentioned in a previous entry, this transitional time of year is always difficult for B, so it's hard to sort-out whether or not the increased OCD activity & sensory overload is the result of the stress or co-incidental, although it probably doesn't matter. What matters is that we respond appropriately to the emotional & physical safety issues... It's also an unsettled time of year because of all the end-of-year meetings which take the teachers away from their classes, requiring unfamiliar substitutes (actually, by this time, the subs are pretty familiar to the kids, but they may not be as on top of the kids' various needs). Yesterday B had difficulty with OCD thoughts when he entered school, but there was a meeting going on in the special ed resource room, so he couldn't go to his safe space there. On top of it, Cherie, his consultant teacher, was out of school preparing IEPs for the up-coming CSE meetings. I thought I had gotten him calmed down & safely into his class... only to be told by another parent that B was at the top of the stairs, crying behind a door. There being two sets of stairs, it took me a while to find him. He was crying because he'd been so distressed that he banged his head & it really hurt. I took him to get an ice pack, then talked with his classroom teacher, Jen, about what we could do to help him calm down. She set up a signal with him so that, if he couldn't use his words to tell her he was in distress, she would still know & be able to get him somewhere he felt safe. Jen is wonderfully caring & creative- we've been so lucky that she's been B's teacher for 2 years. B coped fairly well with the rest of the school day (I didn't get any phone calls for help), but when I came to get him from school, I found him sitting at a computer, supposedly drawing, but he was really ripping the skin on his fingers with a push pin. :( This has become the latest perseverative habit... he started doing it a couple of weeks ago & we made a fuss, then didn't see any evidence for about 1 1/2 weeks, then he started doing it again last week. One night he went to bed with 6 band-aids on his fingers! We have made everyone at school aware of the problem, but he's very subtle & sneaky about it, so it's hard to catch him. Last night C & I brainstormed ideas & decided to offer him one Pokemon card for every push pin he hands in to a teacher. I told everyone this morning, & the universal response was- "Great idea! But what if he starts just handing us push pins for the heck of it?" C & I had already decided that it was ok if he harvested push pins for a bit :) The idea is to get him in the neurological habit of giving them away to a teacher instead of holding on to them & hurting himself. The more he hands in, the more he's likely to keep handing them in... it's worked with other perseverative habits, it should work again.

Today was B's CSE to get ready for 5th grade. It was pretty darned civilised... although we never get used to getting the comprehensive, warts-and-all overview of our kid. Not only did they agree to the increase in speech therapy sessions from 3 to 5 per week, but they took it as a given that the Integrated Special Classroom designation would follow B to his next physical classroom. The most surprising thing was that they actually offered us services B has never had before... I guess the city runs a summer-school programme for kids with autism to help them maintain their level of functioning (academic, OT, Speech & social) while regular school is out. It turns out that B is eligible for this service, so they very kindly offered. I described the plans we had made for B, including 2 weeks of computer camp where he'll learn how to design his own computer games. I explained that I essentially home-school during the summer, with a daily schedule of things to do, & mentioned that we'd written a book during last summer's home-schooling, among other things. We all decided that B would likely enjoy this more than summer school (understatement of the year :), & we thanked them for the offer. So- it's done for another year & B now has the support systems in place to help him make a good start in 5th grade.

My plans for today, besides the CSE meeting, originally included picking B up from school & taking him to see his psychiatrist right after... but events have caused me to add another stop. I've had another flare-up of arthritis, which has made even typing difficult (hence the less-frequent updates here), so I'm on my way to the doctor to see what she can offer :) I've been very aware for the past few days how much the pain saps my energy for helping/coping with B, so I'm ready for some relief. I'd cross my fingers but... ouch!

Wednesday, May 10, 2006

Getting ready for 5th grade...

Today we had an early meeting with B's school team to get ready for next Tuesday's CSE (Committee for Special Education) meeting. B's triennial review (required by law in our state) was last November, so we didn't have to have another meeting this year, but we were concerned about B's IEP not being up to date by the time he starts fifth grade in the fall- which would be 10 months after it was last updated. So we requested a meeting just to get things in place for the big transition. At B's school, moving up to 5th grade is a big transition. His school has 3 floors, with the pre-k through 1st graders on the first, the 2nd-4th graders on the second, & the 5th-8th graders on the third floor. On the third floor the kids get their own desk (rather than a cubby) in addition to a locker to keep organised. The school- & -homework expectations increase. On the third floor are the big kids... 'nuff said.

When you ask B about moving upstairs, you get varying answers- it'll be ok, there will be more homework, he already knows some of the kids... (some were 4th graders in last years' 3rd-4th grade class with him), but you don't get a lot of strong emotions from him on the topic. Even when he found out that one of his best friends at school, presently in 5th grade, is "looking for another school" next year (for various reasons...), he doesn't seem terribly disappointed, which I've found interesting. Our concerns are much more concrete- how do we make sure B either has or quickly develops the skills he'll need to cope with "the next level"?

One thing that was apparent today, compared to our last team meeting in February, is that B is no longer in a limbo-ish place developmentally. When we last met, it was mostly because we all found that the various coping mechanisms we'd put in place to help B with the OCD/Tourettes tics/thoughts/behaviours were no longer working, & that B was in a very unsettled state. Many of the ideas we brainstormed, such as allowing B to leave the classroom to do his work in a quieter place, have worked well & he's been coping pretty well with school in spite of a general increase in sensory-overload-type symptoms & behaviours. Every member of the team reported instances where B was able to state that something was bothering him & to find a solution before the sensory or emotional overload became overwhelming. This is the kind of progress we're hoping to continue to build on, & it's heartening that eveyone's seeing it. We're all also seeing increasing instances of "preadolescent" behaviours, such as sarcasm & snappishness, &, yes that's heartening, too (although annoying), because it means he's developmentally on target. Talk about your mixed blessings... :)

Cherie, B's consultant teacher, had prepared an update with input from B's classroom teacher, speech therapist, & OT. We went over this & fine-tuned it it a bit. It's always a difficult process because B's behaviour is so erratic. Almost everything positive- & there is a lot- had to be qualified with "when not disturbed by OCD "thoughts" or tics". At once point I asked how many hours of the school day did B need intervention/assistance for these problems, & the estimate was 3 hours a day... when you consider that B is in school for 6 hours a day, it's a pretty significant amount of time. So the first priority for B's CSE seems to be to make sure his 5th grade classroom receives the "ISC" (Independant Special Classroom) designation that they gave this year's classroom. This designation allows B to receive the consultant teacher hours he needs, without having to have a one-on-one aide. B has stated specifically that he does not want an aide & it's thought that it might be counterproductive to his growing independance to have one- as long as he gets sufficient time with the consultant teacher. It's all such a balance!

B's speech therapist said that she is requesting an increase in hours with him, to help him bridge the very real potential socialisation gap. We are particularly concerned about B's ability to distinguish friendly teasing from the mean-spirited kind that seems to be a part of older-kid play. B is able to tell the difference when it's happening to someone else, but does not process his own experiences quickly enough to keep up with the flow of group dynamics. Another thing we discussed whether we should request a laptop to replace the AlphaSmart- or, at least, when would be the best time to request an "upgrade". He does so well with the Alpha that he might benefit now from the versatility of a laptop. His OT said she'd consult the Adaptive Tech person who got B started with his Alpha & see what he thought. B's OT has also arranged for a consult from our school district's Autism Spectrum Disorders team to help her set B's goals for next year, since they seem to be more more sensory-integration/motor-planning oriented than anything else. She's been working on ways for B to help organise himself better, & also working on the group efforts to help B learn to anchor himself better time-wise. It occurred to me yesterday that these efforts- helping B to become more independant about keeping track of the passage of time & sequences of events- will also help to alleviate some of the OCD anxiety, since it should be easier to take his mind off the disturbing OCD thoughts when he has learned how to focus on his environment more.

Outside of specific ideas for the CSE meeting, we talked in general about strategies for helping B cope with the end of the school year, & for us to cope with him; as well as ideas for helping his transition upstairs. One wonderful resource that we turn to every time we face transitions with B is a book called Asperger Syndrome & Your Child- a Parent's Guide by Michael D. Powers with Janet Poland. The school-setting recommendations are very helpful, & one that we passed on to the team was to put together an "owners manual" of information the new teacher(s) should have to help them understand B's quirks & hot spots. Some of these do change, but there are enduring topics that are best avoided with B (such as the word "relax", which will send him into full-body tics... not exactly the expected result from using that word). A strategy that we came up with for end-of-year coping is a system that should help B to not only take better charge of his behaviours at school, but to motivate him to participate more in classroom activities. When brainstorming motivators, we came up with the idea of Pokemon cards, which he'll do pretty much anything to earn, & saves all of his pocket money to buy... so we decided that he & Cherie will design & make a set of cards that will be distributed to his teachers & therapists, who will then use them to reward appropriate/desired behaviours. When B collects 7 cards he'll get a small pack of Pokemon cards to add to his collection. We have been doing behavioural charting at home since kindergarten, but the closest thing we've gotten to this at school has been docking his allowance for swearing (his teachers keeping track for us, updating when necessary). Interestingly, this worked almost immediately, & we never had to dock his allowance for in-school swearing, which cleared the problem up very nicely :) So were are hoping that the cards/rewards will work as well & also be something that can be carried-over into the next school year.

All in all, I am once again left in wonderment at the dedication, skill, & love B's team of teachers & therapists possesses. We are one lucky family... & with this kind of assistance, CSE's are just not the gut-wrenching experience they used to be. Onward to next Tuesday's meeting...!

Friday, May 05, 2006

The value of feedback/intervention & some anime, too...

I spoke in my last post of B's difficulty with a classroom aide's manner of behaviour modification with him & some of the other kids, which was causing him to tic whenever he saw her... I was so glad to have gotten to the bottom of one of his OCD/tic triggers, & with his permission, I spoke to B's consultant teacher, Cherie, about the problem the next morning. She was also glad to have the info, since it seemed to her a pretty easy problem to fix. I have no idea as to what exactly transpired, but when I picked B up from school the same day, B & the aide were thick as thieves, planning a prank on the other 3rd-4th grade teacher & class... Hooray! When I off-handedly asked B on the way home if things were ok with this aide again, he said they were. And to prove it, there was no sign of ticcing from him when we arrived at school this morning & met her on the way to his locker. They have since planned a date for the above-mentioned prank & are hoping for a bit of help from me as well (it involves bubble-wrap :). Stay tuned...

Earlier this week I picked-up the 2 available volumes of one of our favourite mangas, Hikaru no Go, on dvd. We have been watching our Miyazaki dvds with the japanese soundtrack (& english subtitles) since last fall, & then I discovered that most anime has the original japanese soundtrack included as well (sadly, this does not include the Pokemon dvds)... So far we have found we don't even like the english dubbed voices of any of our anime, so B & I are watching them all in japanese. I have found that my sense of the rhythms of the language hasgotten a lot better since watching in japanese, plus I'm picking up a lot of often-used phrases, much to the amusement of our teacher, Tomoko. She says I'll be able to speak to any teenager I meet in Japan :) (but nobody else will understand a word I say... hee hee). B & I have worked our way through the Fruits Basket dvds (which end loosely with volume 6 of the manga- although the manga is up to volume 14 in the english release & the story is still continuing in Japan...), with my prepping him for the fairly emotionally intense last 3 episodes ahead of time. I've found that I have to read most of the subtitles to B, too, because they are talking about some things that he just doesn't relate to yet... Since they ended the dvd series where they did, there had to be some major changes in order to tie-up loose ends, & B was not happy at all about them. To be honest, I wasn't either, although from my adult perspective I could understand why they did what they did. B was just plain mad, though, & it took some time for me to calm him down after watching the last disc. He kept saying "that's not what that character would do!", with his face stormy... B definitely relates with some of these characters, most of whom are cursed to transform into animals when hugged by someone of the opposite sex. I have wondered if he doesn't identify (on some level) his relative helplessness in the face of the OCD with the plight of these (mostly) kids who also are at the mercy of uncontrollable events. For all of the oddness of the storylines, Fruits Basket is also very sweet, sometimes hilariously funny & sometimes heartbreaking.

I thought that B might actually enjoy Hikaru no Go even more, since it's about kids that are closer to him in age, but when I read a review of the dvds that said that the english dub did some obnoxious things with the ghost character Sai's voice, playing him as a drag queen (which most certainly he is not...!) I was put-off buying them. Sai is a 1000-year-old ghost & the way he looks reflects (with one or two differences) the way men back in the Heian Era dressed combined with a bishounen element not uncommon in manga (in the picture above, Sai the ghost is on the laft, with some of the other main characters on the right). After realising that the anime discs have the japanese soundtracks on them, I decided to go ahead & get Hikaru, & we just watch it in Japanese. B does like it quite a lot... they make the Go games quite dramatic & interesting & the interactions between the kids are neat, too. B & I have been talking about how the way the kids relate is different than in the US- for example, how they call each other by different kinds of names depending on who's older or younger. B has an easier time following the english subtitles, too, so he doesn't need me to read them to him & he follows the story better. But as much as B enjoys Hikaru, he told me he likes Furuba (the Japanese nickname for Fruits Basket) better. Furuba is goofier, for sure... He has, however, taken-up playing Go again :) He has been setting-up games part-way through & then playing them to the end & playing at school, too. The Hikaru dvds have better explanations of the game than the manga, plus in-between segments teaching basic Go concepts, so B has a better visual idea of the game now. So, not only do we get more exposure to japanese conversation, but the Go board's out again. Since we still find that B needs some quiet down-time after school, preferably in front of the tube, the combo of japanese language practise & anime seems to be working well...

Wednesday, May 03, 2006

Tics & OCD & the dentist...

Well, it's 10:00 pm & B still isn't asleep... It's been a very long time since he's had this sort of trouble. I tried reading to him as usual, but the OCD-driven tics were so loud & frequent that I couldn't hear myself read, let alone B hear me. I tried to problem-solve, to see if there was anything that I could change in his environment so he could relax. At first he said, no... so dad took over & tried just laying on the bed in the dark with him, to see if he'd drop off to sleep with just his company. But that didn't work, so I came back up & tried to read again. No luck. This time, when asking if there was anything we could do, he said he couldn't breathe in bed, because of a thought. I offered first to spray his bed with lemon-lavender spray (which used to work...) but he said it wouldn't help, so I suggested we change the sheets, since this has also helped in the past, & he agreed. He moved his stuffies & bionicles, & seemed in much better spirits as we replaced his sheets with clean ones. I asked him if he wanted me to stay & he said no (he actually apologised quite a few times- he's been compulsively apologising for the past few days & I've been trying not to get frustrated, but it is annoying...), so I turned out the light & left him. C stayed upstairs to monitor the situation... & soon we heard the tics (loud, exploding noises) start up again. C came downstairs & said he was going to try putting B in front of a video (it was now 9:45 pm) to see if he could get his mind off things. I wished him luck- B sometimes rejects this sort of intervention when he's really tired- but it seems to have worked. I have been reading Stephen Hawking's "A Brief History of Time" to B at bedtime these days, & tonight we got into the warped nature of space, as predicted by General Relativity, which had reminded us of some of the cool graphics in "The Elegant Universe" (which we taped from PBS at least 1 1/2 years ago, which started B on his string theory craze), so he requested to watch "Elegant Universe" for a bit...

Reading Zilari's "Partprocessing" & Kristina Chew's "Autismland" blogs has helped me to remember that there doesn't have to be a "logical" reason for every behaviour of B's, & that days are days- some start out rotten & then get progressively better, & some begin "good" & end very strangely... today seems to be one of the latter. Today started out with B's semi-annual dentist appointment. The first good thing (we were unanimous in this sentiment) was that we didn't have to leave the house until 8:30 (rather than the usual 8:00), to get to the dentist by 9:00. B happily chatted about Pokemon during the car trip. He was a bit anxious in the waiting room... there are a lot of little-kid-type toys in there & these usually start him ticcing. I encouraged him to watch the fish in the big tank by making various observations about the different kinds of fish & what they were doing, which worked pretty wel,l until we were able to go in for the appointment. From this point on B was completely self-possessed. B has absolutely no fear of dental appointments, thanks to our having gotten him started when he was 2 1/2 years old with a pediatric dentist I knew from my research days. As a former dental researcher & myself a dental-phobic, I was determined to get B so used to the dentist that he'd be comfortable going there no matter what. My dental-phobia stems from having inheirited deeply grooved molars that were impossible to keep clean. I had my first filling at the age of 6 & the misery only started there. The dentist I saw all too often when growing up didn't believe in novacaine (he'd probably be charged with child abuse these days), so my experiences with dentistry were extremely painful & scary. Lucky we decided to be pro-active about B & dentistry, because he got my tooth morphology & also had his first filling when he was 6... with nitrous oxide and novacaine (although he swears there was no needle involved...). He also had his molars sealed when the filling went in, to minimise the caries risk. To make sure that B would continue to have good experiences at the dentist, I made sure to inform the dentist of B's Aspergers diagnosis at his first appointment afterward. Dr. Dan was very grateful when I did- my impression was that this doesn't always happen, which can make things unnecessarily difficult for him when dealing with his patients. When we were referred to an orthodontist, I asked for someone who would understand B's oral-motor issues & the person Dr. Dan sent us to was great (& told us to come back next year, to boot, which was good news :).

While watching B get his teeth checked & cleaned, x-rays taken & fluoride applied, I reflected on how well he was coping. He knows the office & the routine very well, plus he knows the hygienist (& she knows him :) & Dr. Dan, of course. B happily chatted (when his mouth wasn't otherwise occupied), said "hi" to the doctor as he walked in without prompting, did everything he was told, endured the fluoride apparatus & sucking hose for a whole minute, went off for his x-rays without a glance back at me... no tics, no intrusive thoughts. What a blessing!

I got B to school in time for math, which was serendipitous because they were starting their new geometry unit, which B had been looking forward to. I left him happily anticipating the challenge... C also had a dentist appointment today, so I did not get my usual Wednesday off from picking B up. Wednesday afternoon is music lesson time for B's class, something he also usually looks forward to. Lately, though, he's been tic-ridden & unhappy when C's picked him up on Wednesdays- it seems that there are more & more OCD triggers during music class, making it almost impossible for B to participate :( On the way home I asked him about the triggers... he said that one trigger was "an adult in the room, but not Joe (the teacher)" & I guessed, correctly, that it was an aide in his class. I had been getting the feeling lately that she was triggering him & had wondered why. So, I asked... & discovered that perhaps B's OCD sensitivities aren't completely off-track or unhelpful. B said that this aide had been scaring him with some of her methods for trying to modify his & some of the other kids' behaviours. She wasn't being mean (he was clear about that) but she was counting, & doing other things that made him feel pressured, so that he "couldn't think what he was supposed to do". I explained to B that techniques that might work with NT kids don't always work with kids who have autism, & that this aide might not understand that. I also explained to B that I meant by "NT" what seems to be accepted by the grownups with autism as a better word than "normal" to describe those who are not on the spectrum or have other neurological differences. He liked this idea a lot :) I then asked B if I might mention this problem to Cherie, so that she might be able to help the aide learn better ways to deal with kids with neurological differences. He made it clear that he did not want to directly confront this person, which I will explain to Cherie, & so he said it was ok. I also mentioned to B that, as much as a pain in the butt OCD is, his sensitivity in this instance might just help someone learn to do a better job with the kids they are supposed to be helping. I was really glad to finally find a positive attribute for the OCD... !

B seemed very functional, if a bit ticcy, for the rest of the day. He had earned a new Pokemon dvd, plus a small bionicle (the stars were in the right places :) & got them after school, plus he & I helped dad measure his sailboat shrouds, went for a bike ride... did all sorts of diverting & even tiring things, but something was still on his mind at bedtime. I'm happy to say that, now that it's 11:00, all is quiet upstairs. I guess Brian Greene worked his magic :) (we call him Brian at home, not that we know him or anything, but we've watched "The Elegant Universe" so many times we feel as if we know him). I'm trying not to draw any conclusions from this evening's sleeplessness... in the past, bedtime issues have been a terrible problem for B & us, with many strategies tried & tossed out, until we're ready to tear our hair out. I'm already making a list of things to try tomorrow: longer bike ride, no dvds after dinner, try to get him in a warm bath... make sure & wash the sheets tomorrow in case we need another change!! Past experience can be a good & bad thing- by helping me be prepared or causing me to needlessly anticipate problems- but thanks to my online mentors, I will try not to borrow trouble & let tomorrow be tomorrow.

Monday, May 01, 2006

Sailing on our minds...

Yet another sign of Spring has occurred- the boat is out of the garden! Yes, that boat, above, lives in our back garden during the winter. It takes up all of the annual bed (which is nearly half of our city back yard), with the mast just poking through the briar roses into the smaller perennial bed... so the exit of the boat heralds the possibilities of what we'll plant this summer. Nifty, huh? :)

The picture above is of C & B sailing on the bay last summer. This weekend was full of getting-ready-for-sailing activities, & caused C & I to reminisce a bit because we bought the boat (it's a 15-ft. Snipe, which is a small, racing-class boat) 10 years ago this June, when B was just 9 weeks old. We joined the sailing club when I was pregnant with B- in fact, we met some of our sailing friends for the first time at an open house at the club & went for our first sail in a Snipe when I was pregnant with B, but didn't know it yet...

I was lucky when I was growing up to have had a neighbour who loved to sail her little sunfish, & took me along as a teenager to teach me the ropes, so to speak, because the rest of my family can't swim, let alone sail (I was the only one who liked to be in the water), & because I married into a sailing family- & it wouldn't have done to have been totally ignorant of sailing, believe me. C's father is a naval architect who spent the Korean War tending buoys in Boston harbour while doing his service time in the Coast Guard (& considering that my father had a mental breakdown while in the service in Korea, I think this was a fine place for C's father to have been...). C's dad also sailed on the Coast Guard's sailing schooner, the "Eagle", & has been building boats since he was a teenager. C began sailing when he was 3, & joined his mom & brother in crewing on the family Lightning for racing at their yacht club when he was around 10. He went to sailing camp as a kid, & spent the first semester of his senior year of college on an oceanographic sailing ship with the SEA Semester programme out of Woods Hole. When he came to town for med school he found our present club through the Lightning grapevine & crewed throughout med school & residency. We decided to join as social (non-boat) members, then take some time to find the right boat & fleet for us. We didn't intend to buy a boat with a new-ish baby in our lives, but one of the members was moving & C decided to offer to buy his boat- so we found ourselves with a racing boat. I was not an experienced crew, but I loved sailing & was ready to learn. It helped that C was a calm person & never yelled (something practically unheard of among sailing skippers :). We found a sitter who was willing to watch B at the club, so I could nurse him after the racing. And, hey, the hiking-out was great for my abdominals, after having a baby :) I will never forget my first regatta, that August, when B was just over 4 months old... I crewed 2 races, jumped off the boat, nursed B, ate something, jumped back in the boat & sailed 3 more races... & did the first part over again the next morning. **shakes head**

Our Snipe fleet is is one of the nicest groups of people we know. Many of them have become like second family for us & surrogate grandparents for B. When B was diagnosed with Aspergers- & as new diagnoses occurred- we have felt comfortable sharing the journey with these friends, as well as with some of the members of the larger sailing club community (we have 4 fleets), which has been wonderfully supportive. I was struck by the importance of this community last Friday evening when we went down to the club for a potluck dinner (sponsored by our fleet) & meeting (which B & I didn't stay for). B usually hangs-back when presented with rooms full of chatting people, but this place has been a part of his life for so long, he just sailed right into the crowd & was soon regaling 2 women with the joke du jour. He then called dad over to a conference at the foosball table, which turned into a game of foosball (of course). This ended when the line formed for dinner. Eating just bread & salad, B was done before us, so wandered out to the porch where someone had set up a telescope, to take a look. As I kept an eye on him through the big picture window, he went from conversation to conversation with various people who came by to chat. Watching his body-language was interesting... it sometimes wasn't obvious that he was talking to the person. His head was turned in another direction, or maybe hunched between his shoulders, but I could tell by watching their lips that they were conversing, & it was nifty that B stuck with the conversations, & that these folks were happy to take the time to chat with him. He ended his evening at the club in deep discussion with a physicist in our fleet about black holes, which is the topic of his end-of-year research project. C was on hand for this & said it was so much fun to overhear his son discussing physics with someone who was obviously enjoying the conversation just as much as B was.

Yesterday was a club workday, & although B chose not to join dad in painting the club (probably not a bad thing, since B doesn't like messy painting jobs, & we did have a Japanese lesson in the afternoon), he did go with C on Sunday afternoon to take the boat down to the club, preparatory to getting it in the water. OK, so maybe it was the promise of stopping by the games store to look for new Pokemon cards that really got him to go... but it's still pretty neat that B is so comfortable going to the club & has such a wonderful relationship with so many of the people there. C has hopes of training B to crew for, if not himself (I had to stop crewing a few years ago because of my arthritis), then perhaps another member of the fleet (he seems to think that beating dad might motivate B even more than helping dad :). There's no question that B is capable of learning to crew- he's already pretty good at keeping the boat on a course (thank-you, visual/perceptual therapy!!) & is learning how the sails work with the wind. We've been encouraging his interest by reading Arthur Ransome's "Swallows & Amazons" books with B, since C's mom gave B the first in the series last summer (we finished book 4 last night & he's eager for the next one). The opportunity to sail & learn about sailing is also a nice antidote to B's intermittant feelings of low-self-esteem when it comes to sports. We often remind him that sailing is a sport & most of the kids teasing him about not being able to kick a soccer ball would not know what to do in a boat... A nice adjunct to the sailing is that is has driven the efforts to make sure B can swim, & he's finally gotten to a place where he really enjoys this, too.

Launch Day (first day of racing) is next Sunday. Once the water warms up, C & B will get out on the water together again... although I'll admit that what's really got B excited about the new sailing season is a practical joke he's planning to pull on one of the grandfatherly jokesters in the fleet, involving a snapper (a firework that goes off when the string is pulled) stuck to the back of a boat in such a way as to go off when the boat leaves the dock- so it'll sound like an engine backfire (Snipes don't have engines, you see...). Only B would put that one together... let's hope it works ! :)