Tuesday, October 31, 2006


B was feeling a lot better this morning & very much looking forward to the Halloween events planned for school today, as well as trick or treating in the evening. He was wearing most of his costume to school, since it was black pants & turtleneck (he was going as a spy), & then brought the spy gear to school in his backpack, to be festooned later when everyone got dressed for the party. He's never gotten dressed for school so quickly as he did today :) I dressed up, too, since it seemed a shame to do my door-greeting job on Halloween costumeless... I wore my wizard's robe & my "dragon optional" (it velcros on) witches hat (with the dragon on, of course). It was a hit ( I even got to do some Mulan lines, when one of the kids asked me why I had a lizard on my hat & I said it was a "dragon... dra-gon!" :) I was not the only adult dressed up- Paula, our director, dressed as a queen for the whole day & she looked really neat. B & I had quite a lot of stuff to haul to school. I had 4 bags of props for paper bag skits for the party (create-your-own skits using the props) plus we had a pumpkin for math class, plus our regular stuff. I decided I'd just stay at school after finishing-up with the greeting, since B's party started at 10:30... actually, that was one of the potentially problematic parts of the day. They had to have their party in the morning since they had spanish & music classes after lunch (these teachers are supplemental teaching staff & have less-flexible schedules). We got safely to school & I did my greeting thing, & then came back upstairs when B was having OT. His OT & I chatted a bit while he legoed, then B was done & off to math class (they were doing things with the pumpkins, estimating their weight & then weighing them, estimating how many seeds they had, then counting them- it was pretty neat). While I was waiting for the party I put the warp for a scarf on the school loom for a project the kids are planning to do. They have been working on some fund-raising events for the Heifer Project & one of them is to weave a scarf communally & then raffle it for Heifer. The warping took up pretty much all the time before the party began. Another parent was setting up refreshments for the party while I worked & one of the kids was making Halloween cookies with his OT. The rooms had been decorated the previous afternoon & it all looked very festive.

Last year the Halloween party cooked-up by the room-parents was really over-the-top (by the school's usual standards), with a huge inflatable spider that played scary music as part of the decor, huge amounts of food- including a lot of candy, & a series of games that the kids were shuffled in & out of for the afternoon. I helped out, but was rather appalled by how little the kids were involved in the process. This year the teachers & administration of the school tried to reclaim some of the festivities, asking that it be kept simpler & that no candy be served (sweets like fruit, cake, healthy cupcakes, & the like were fine). This upset some of the parents, but I was glad to see the changes. I was also curious as to how Halloween was celebrated on the "big kid" floor... I had suggested the paper bag skits to B's teacher as a chance for the kids to make their own fun & Jen really liked the idea. After the kids changed into their costumes & had noshed a bit on the goodies (B was upset by the ice in the punch that was moulded to look like a brain...) we started the skits. Most of the kids were ok with the idea, but while I was vetting a group of the older boys a couple flat-out said they wouldn't do it (not very nicely, I might add). One of the teachers, who had been with a group of more amenable girls, heard the comments & suggested we switch groups, which I was happy to do. The girls & I decided to put on a fashion show of the latest "ghoul styles" & we had a lot of fun with it. The teacher with the balking boys managed to get all but one of them to participate in their skit. B & 2 friends (the boys shook-out in 2 very different groups, mostly divided by age) seemed to have fun with theirs & it was really funny, but B was upset later because he said they didn't have enough time to really do their skit... which was true because we had only 2 hours for the party & lunch & there was a very involved scavenger hunt planned by another parent happening after the skits... After a bit more nosh they headed out on the scavenger hunt, on the grounds of the school. The hunt had been planned by a mom who had an older boy in the class, one of the boys who has no learning difficulties (a minority in B's class...). They were looking for bones that fit together into a skeleton, colour-co-ordinated for each group (they kept the same groups as the skits), with clues attached leading to the next bone. The winners were told they had a special prize... It had taken a lot of work to set it up, & unfortunately some of the clues had detached from the bones, so a couple of the groups (including B's) were completely at sea & frustrated. The bigger boys ended-up winning, & the prizes were cans of crazy string, which they were supposed to have used on the teachers, but instead used on anyone who came near. One of the girls became very upset when she was sprayed & lost it with the boy who sprayed her. She ended up being sent home, she was so upset... B & another of the boys in his group ended-up in tears because the hunt was so hard & they were exhausted from running around. Being on the spectrum, they all were driven to finish it, though, so I tried to help them out... Then, of course, they all had to come in, eat lunch, & then get back to work (riiiiight...). B was having a terrible time getting over the frustration & even getting his lunch in his tummy wasnn't helping him get back on track. I had been planning to leave & come back at regular time to get him but I didn't feel comfortable leaving him in a state of near-meltdown. His consultant teacher was putting out so many fires that I felt I should stay with B. I was getting pretty darned tired myself... Eventually, when it became clear that B was not going to be able to cope with the afternoon, I just took him home. My gut feeling about the party is that they really needed to have the kids participate more in the actual planning & setting up, rather than having things done for them. Keeping things really simple would have met more of the kids' needs, too. I could really see how having such a diverse group of kids, maturity-wise & diff-ability-wise, made planning activities that would meet their needs really difficult, but, to be honest, I didn't see any evidence that the kids' needs had been taken into account by the parents who planned most of the party. It was more of a "make sure they have lots of stuff" mentality. Sigh.

B played quietly all afternoon, either with legos or on the computer. I actually took a nap on the sofa (B turned the computer audio way down for me) because I was blasted by the morning. Grammie called at about 4:00 to say she was still not feeling well, so she wouldn't be coming over :( C called at 4:30 to say that the autism conference was over & he'd be home soon.

The neighbourhood party started at 5:30 with pizza in the park. B got suited-up with his night-vision goggles & spy hand light added to the bandolier of gear already around his waist (later C put his navy watch cap on him, too, to make him look even more spy-ish). B did pretty well in the park until there were a lot of squesling little kids there, then he wanted to go home. He & C started out trick or treating at about 6:15- it was dark, so why wait? They were back after just 1/2 an hour & B was ready to come in for the night. Most of the other kids had barely started... B has always enjoyed trick or treating in our neighbourhood & our neighbours have always made a big deal of B's costume, loading him up with candy &, for the past couple of years, money for UNICEF. This year, C said, B was much more uncertain about approaching peoples' homes & ringing the bell by himself. Noticing this, C steered B to houses where he knew the people & that seemed to help. Not long after they got back home our japanese teacher, Tomoko, arrived. She has never really experienced Halloween here in the US & was ready with her own bag of candy to add to ours & her camera :) C told us where the coolest pumpkins & luminaria were & we took a walk around the neighbourhood so she could photograph them. We got B to put his gear back on so she could take a pciture, then C got one of us (I had some silly hats available & she chose one shaped like a crab to wear). Then we just handed out candy & Tomoko took pictures. Her family in Japan is looking forward to seeing what Halloween is all about (at least in our neck of the woods :).

B was in bed by 8:30 & asleep, as I read to him, by 8:45. I felt bad that things were so stressful for him this year. He'd really been looking forward to all of it... I am already thinking of suggestions for school, so that things might go better next year, particularly for the kids on the spectrum. C & I sat for a bit & he told me some about the conference, but we were both too tired to go into details. He said that the speaker from the CDC was very good & that he learned a lot. I promise to report as soon as we've been able to go over it all together. I hope that everyone who celebrated it had a lovely Halloween!

Monday, October 30, 2006

Sick day...

B was up early today & when I got up, right before the alarm went off, he was quietly watching "Return of the Jedi" in the tv room (ever since we let him see "Attack of the Clones" last week he's been watching the other movies again). He made the obligatory comments about it being a bummer that it was a school day & I reminded him that he's only in school 3 days this week... he added that half of Tuesday will be Halloween party... & so went into his room to get dressed. He had more leftover pizza for breakfast, microwaved it himself (after asking how long I thought he should do it) & got his own milk. In the middle of it all he told me that his ear hurt whenever he ticced & laid his head against my arm. I asked him if it hurt inside or outside his ear & he said it had been hurting inside for a few days... This is one of the hazards of B's neurology. He rarely tells us about physical discomfort until it really gets bad, or he ends up in the hospital (that's happened a couple of times). I decided to give him some sudafed for the ear pain, then he continued making his breakfast. I got busy getting laundry started & didn't even sit down to my own breakfast until he was done eating. I reminded B to brush his teeth, then went to sit on the sofa & read my email while eating breakfast. He joined me after brushing, laying down on the sofa with his head right next to the laptop, so I put it away & asked him what was up. He said that he felt sad about people buying & selling animals & began to cry... we talked about how much he cares about animals, about why people have come to feel the way they do about animals, about how distanced we've become from understanding where our food & clothing comes from & why, about how things used to be when people raised their own food & felt grateful to the animals & the earth for giving them food & shelter. B seemed calmer & I had to get moving or we'd be late to school. When I came down from brushing my teeth he was still on the sofa looking weepy, & it occurred to me that I should give him some tylenol for the pain, too, so I got that out for him & then got him moving toward the door, shoes, coat, etc... He was having a tough time leaving Rufus behind, although he had his Mudkip stuffie in his belt pack, but I convinced him that Rufus was safer at home. It was chilly outside, & once we got in the car B kept complaining that he was really cold (in his winter coat). About 3 minutes into our ride to school I looked over my shoulder at him & realised that he looked really peaky, so I turned around & drove back home. I told B that I wanted to take his temperature & that I thought he looked a bit too rocky to be at school today. He was a bit unsteady about the change in plans, so I made some jokes about "weren't we just here?" when we got home & he giggled a bit. He didn't have a fever, but I bundled him into the foof chair in the tv room, with a wool afghan around him for warmth & made him some cocoa (I told him that there would be no computer on a sick day, but he could watch tv, lego, or read for quiet activities & he accepted this placidly). He watched the very end of "Return of the Jedi" & then just left the PBS station on when it was over. I think I knew he was sick when I went up to check on him between loads of laundry & found him watching Sesame Street- something he normally wouldn't be caught dead watching at the age of 10... eventually I heard him playing with his legos in his room & when I asked him he said he was feeling a bit better. He came down right before lunch & we watched a Kim Possible episode together, then looked online to see if they had released any new ones in iTunes. There was a Halloween episode just released, so we downloaded it during lunch.

B decided to eat his lunch from his lunchbox sitting in a patch of sun on the kitchen floor. After lunch we watched our new KP (it was really fun) & then he went right back upstairs to play with legos until it was time to go see his psychiatrist for a monthly appointment. He seemed low key still, but not nearly as peaky as this morning. He was pleasant & courteous to the doctor during our visit. On the way home B told me that it felt really weird to be out of school on a school day, & that although school was a pain, he preferred to be there rather than be sick. :) I was glad he'd come to this conclusion. As much as he's had trouble getting used to things this school year, he hasn't once asked to stay home & I had a brief worry this morning that staying home today might start something. I also realised that B rarely misses school because of illness. I can't even think of the last time he was sick enough to stay home... he had the viral thing that was going around for a few days earlier this month but never felt or looked bad enough to stay home... This is a nice change from B's early years, when he was really ill a lot. For a while it seemed like we made a trip to the hospital at least yearly for flu, pneumonia, croup. When we finally had his adenoids & tonsils removed (because of chronic fluid in his ears that caused him to have a 75% hearing loss, plus chronic tonsillitis) a couple of months before his 5th birthday his health really changed for the better.

B legoed right up to dinner- I brought him a snack because he was too busy to come down :) He & dad tidied his room after dinner (he had spread legos through 3 rooms upstairs but cleaned up the other rooms before dinner at my request) & then was ready for bed about an hour earlier than usual. I read more "Greenwitch" to him then lay on the bed with him until he fell asleep (which was not easy, since he's decided that all his stuffies are safer under the covers with him, & so there's now a lump about the size of a person right next to him & very little room for me...). He was ticcier than usual, worrying for a bit about the buying & selling of animals again, then worrying about Rufus, so I invoked Mew (a very powerful & silly pokemon) & that distracted him from the thoughts enough so he could fall asleep.

I am very glad that B was feeling better by this evening, since he's looking forward to Halloween. There's the party at school (for which I am organising a "create your own skit" activity) & then a neighbourhood party in the small park across the street, followed by trick-or-treating. Our japanese teacher is coming over to share in the fun, since she hasn't ever experienced Halloween in the US & her family in Japan is waiting for the pictures so they can share in the fun, & Grammie is coming over as well. I have labelled all of B's spy gear with his name, ready to take to school. I think I'll wear my wizard robes to school just for fun, as I do my greeting job in the morning.

C is spending the day tomorrow at a local autism conference, his first, sponsored by the Developmental Services unit of the University where he works & where B was diagnosed with autism (his neurologist is one of the presenters). The keynote speaker is Marshalyn Yeargin-Allsopp, Chief of the Developmental Disabilities Surveillance & Research Branch, National Centre on Birth defects & Developmental Disabilities, Centres for Disease Control & Prevention (that's quite a title!). The title of her presentation is "Autism: Is There an Epidemic?" & we are both really looking forward to seeing what she has to say on this topic. The other presentations are on diet & nutrition in children with autism & an overview of the latest findings on early behavioural intervention, which also sound interesting. I will keep you all posted...

Sunday, October 29, 2006


Thanks to B's busy day yesterday he slept right through the "fall back" hour this morning, rather than waking up really early as in previous years. He seems to have hit the pre-adolescent "I don't wanna" stage of life, so upon remembering it was a church day he made the usual protest, which was duly noted & then we moved onward. He was pleased to have leftover pizza for breakfast (from last evening's dinner with Paula) & that cheered him up a lot. We allowed him to show us 2 more of the bookmarked YouTube videos of Weird Al songs before church as well. :) Usually B reads a book during choir practise (we arrive 1 1/2 hours before the service for practise as C & I are both in the choir- B has been invited to sing, too, but has declined so far) & the first part of the service until kids & teachers go up to Sunday School but today he found our minister's son playing "Adventure Quest" on the computer in the Lounge, so he decided to stay & watch. He didn't join us for church until choir practise was over, then asked for his book (he's still working on "Artemis Fowl & the Opal Deception"), which he read until Sunday School. The choir was sponsoring a fund raising lunch after the service, but B didn't mind staying at all because he (& eventually a whole group of kids) just watched the Adventure Quest game while the adults ate & chatted. It was the first time in a long time that C & I have been able to hang out (well, actually, I helped serve lunch) & talk to people after church. B even requested some soup & ate it while watching the game. He arrived home with the instructions for signing-into the game at home, & C watched it for a bit & said it was no worse than the bionicle game in terms of violence, so we got B logged-in & he played until it was time for japanese lesson. Tomoko had been at a conference last weekend, so we missed last week's lesson. I had written a whole list of phrases that I wanted to know how to say in japanese, like "watch out!" & "have fun!", & Tomoko brough another neat InuYasha-based lesson. B learned how to say "I'm not doing anything bad" (a phrase often used by her nephews, according to Tomoko :) & we we learned the verb form for "I don't want to...". B did very well, but eventually burnt out & was allowed to go back to his game. When we got to my phrases I learned that Japanese moms don't say "have fun" to their kids when they go off to play in their rooms... only if they're leaving the house. Tomoko finally figured out an appropriate phrase for me to use ("tanoshindeneh"). She also taught me the common phrases used when entering or leaving someone's house, all based on a sort of "pardon me for bothering you" sentiment which is very different, culturally, than here in the States (I have trouble imagining being invited to someone's house for a visit & then apologising for bothering them when I get there... ). I need to practise these, though, to prepare for our trip. Tomoko has also started to include some ear-training in out lessons, where she says a sentence & we have to figure out what she's saying. Watching anime in japanese has been a big help with this. B's favourite part of the lesson, I think, was when Tomoko was helping him come up with names for swords for his lego characters, like "shiromizuken", meaning "white water sword". She was impressed with his eagerness to put words & concepts like this together, & I told her that I've heard him yelling in japanese as he's been playing with his legos. Pretty neat... :)

We had a pretty mellow afternoon, after lesson. B focused on his new game, getting stuck at one point, obsessing about it for a while (I tried to help but there wasn't much help available at the site for getting stuck in specific places), then we persuaded him to help carve the pumpkin & decorate for Halloween with dad. He did a pretty darn good job of switching gears, considering that he was really frustrated at that point, & usually the frustration makes it even harder to disengage him. After decorating he decided to start the game over & avoid the place where he got stuck until he understands the game better. Over dinner B kept interjecting info about the game into C's & my conversation about church this morning, which made the conversation very dis-jointed, so we explained to B that it would be good if he would listen to us for a bit (or ignore us) rather than pulling the conversation back to the game every other sentence. We acknowledged his excitement about the new game, & both C & I had spent some time with him this afternoon while he was playing, so the info he was giving us wasn't all new to us. We have been trying to help B sort out the difference between "listing" & conversing for the past few years, & it's interesting to see how the "listing" has evolved from literally reciting a list to his making it seem more like conversation (as he was doing at dinner). I am aware that listing can be a soothing thing for him, so we are trying to make him aware of when we are open to listening to him recite & when we'd like to have a conversation that includes a give-&-take sort of spirit.

After dinner it was bath time, a bit more game, some play time with dad, then I read some more "Greenwitch" to him as he was falling asleep. He zonked out really early (before 9:00), probably because of the time change. This week is going to be very different, as B is off school on Wednesday & Thursday for conference days, & they have a Halloween party on Tuesday morning. He's certainly looking forward to less school this week. I have some projects up my sleeve, with the holidays so soon upon us, so we should have some productive fun... :)

A rare day...

Today C & I took off for Ithaca sans B- our first trip away together in too many years to remember. Ithaca is a small college town about 1 1/2 hours away (home to Cornell University & the Moosewood Restaurant) & has a thriving arts & co-op community. It was one of our favourite getaways before B was born. The sans B part was courtesy of B's school's silent auction last Spring, where we successfully bid on an overnight of kidsitting from one of our favourite people, Paula. Paula is not only an autism mom (to college freshman Ck, B's fave kidsitter & mentor) but was B's first grade teacher & is now director of B's school. To say we were leaving B in good hands is an understatement...

I wasn't feeling comfortable about going away overnight, so Paula kindly agreed to do a fun-filled, all day event with B instead. B knew all week that Paula was staying with him today, but at breakfast he was a bit fuzzy on the details ("you mean you're leaving at 10:00 in the afternoon?") so we explained that Paula would arrive at 10:00 in the morning & that we'd be back by bedtime. In the middle he would be going to a Halloween party with her (hosted by a family from school) & they'd have special pancakes for dinner, among other things. I had decided just to have him wear his Halloween costume all day (it's black pants & turtleneck which he plans to festoon with spy gear so he'll look like a spy) & so that was taken care of. We figured out which phone numbers to leave & remembered to put B's dinnertime pills out in his little pill bowl (& add them to the phone number note). It was, of course, pouring rain & I had trouble deciding how to dress for the wet (bright yellow sailing windbreaker or a nicer jacket & umbrella? the umbrella ensemble won...). Mostly, I was quite unprepared emotionally to leave my kid for the day, but leave we did. B was pretty blase about the whole thing & told me "itterasshai" (sort-of "have a good day" in japanese) for a change (that's usually my line :).

C & I hit a couple wineries on the way down, mostly for christmas presents. We had a wine-tasting record sheet from 1992 (we don't throw anything out...) from one place & used it to help us remember what varieties we'd liked. We finally got to Ithaca & found a place to park in time for a late lunch at a little Japanese restaurant on the Commons. Afterward we wandered around in the rain looking at shops, then had an adventure trying to find the art museum on the Cornell campus (without a map, at first, which proved unproductive so we stopped at an info kiosk & got one). The trees on campus were in full colour & just gorgeous, in spite of (or perhaps because of) the grey sky. We enjoyed the art museum very much, but I couldn't help but remark to C how many things we were seeing/visiting today that would send B into major tics, either from crowds, noise, smells, or from specific images that trigger him. It hit me that, for a little while, I was thinking only about my own needs (which was a good thing because all the walking around was aggravating my arthritis) & not accomodating or projecting about B's needs, too. On top of that, it was just nice to chat with C for an uninterrupted space of time. We ended our visit to Ithaca with dinner at the Moosewood (we got there early, since they don't take reservations) made almost magical by our sliding into a just-vacated parking space right in front of the restaurant :) We have nearly all of the Moosewood cookbooks, so it felt almost like a pilgrimage to eat there again (although our very favourite restaurant in Ithaca was the even more seriously veggie Cabbagetown Cafe, in Collegetown, which closed a few years ago, & whose cookbook we also own). On the way home we were talked-out (for once!) and listened to a favourite old tape recording of the Roche Sisters, singing along as we used to... It made the trip feel almost like a second honeymoon :)

B was in his jammies when we got home & excited to see us. He & Paula had spent the time after dinner finding (& bookmarking) Weird Al Yankovic videos on YouTube & he couldn't wait to share some of them. They had a great day, with only a few "disasters" (Paula wasn't used to our gas stove & the pancakes burned, so they went out for pizza instead). They spent the morning watching "Attack of the Clones", which we'd only just allowed B to see for the first time this past week, & Paula hadn't seen it yet, so she was psyched. She had worn all-black so she & B would match for the party, & everybody noticed, although they decided not to stay long (the fog machine was making Paula cough & setting the fire alarms off, which upset B). At one point B had a tic about aliens, but Paula was able to talk him away from it & B resumed optimum functioning. They called Ck at college so B could talk to him for the first time since August. B had shown Paula some of the Pythagoras Switch videos on YouTube as well & she's now a convert (she wants to get a group of us to do the Algortihm March for the school talent show :).

The best part of the day was that we all had wonderful times (Paula said she had a blast with B). C & I recharged in a way we haven't been able to in a loooong time. It's ok with me to live day-to-day with B, facing challenges & joys, but it's also cool to get a perspective from a difference. C & I talked about how different life became after B was born, & I realised that I'm simply not the same person I was before he was born. B has stretched me & I have grown into the person I am now because of him. I remembered that this was one of the reasons I wanted a child in the first place, because I felt then that having a child would bring meaning & purpose to my life in a positive way. It sure has! I was so glad to have time with his dad, just rambling & chatting & looking at art. I was so happy to get home to B, too, & hear about his day. The coming back together, seeing B's eager face & hearing about his adventures, was a wonderful end to a wonderful day :)

Thursday, October 26, 2006

Who am I?

B's class had an open house last week (known at his school as "Curriculum Night"). In keeping with the beginning of the year topic, the exploration of "mysteries", they made silhouettes of every child's head & then asked them to compose "Who Am I?" poems to superimpose on the silhouettes. I was so blown-away by B's poem that I thought I'd post it...

It really does range from the sublime to the silly :) It really does describe my boy very well, too. I'm amazed by how well he knows himself sometimes... (His scepticism made me think of Kev's wild & wacky post today about the recent Skeptic's Circle meeting- made me wonder how soon it'll be before my kid joins in the fun...)

We had a team meeting today at school, the first this year. Everybody was able to make it (except for C, but we didn't try to catch him because he & I had brainstormed ideas & I brought the notes), & it turned out to be the first time that B's OT & Speech therapist had met each other, although they both work for the city. Our main objective was to find some ways to help B cope with overwhelming tics at school so that he can participate more in what school has to offer. C & I had decided to suggest that B have a weekly or daily schedule with the activities clearly spelled-out, as well as the alternatives when appropriate. For example, B has been exempted from Spanish class because he's taking Japanese, & because he's really bored this year due to it being essentially a repeat of what he learned in 3rd grade Spanish. (One thing we all noted was that B's tics are given free range whenever he's not fully engaged with whatever's going on in class, so this is another good reason to skip Spanish this year...) So during the time he would be in Spanish he's been doing everything from having some "down time" to catching up on things that were covered in class earlier in the day (if he wasn't able to be in the room due to tics). Sometimes his agreed-upon plan for that time has been overrulled by another teacher, who misunderstood how B was using the time, which has really frustrated him. The team really liked the idea of a schedule, since it not only makes it very clear how B's time will be spent (to everyone involved) but also can help B learn the organisational skills he'll need as he gets older. The rest of his class has been learning to use an organiser for their homework, which B isn't doing these days, so he'll get the same benefit from doing the organising in a different way. We also talked about how B can be very motivated to participate in things when he can "earn" a reward. We have been using behavioural charting with B since he gave up the binky (pacifier) when he was 3 & we know it works for him, if the parameters are very clearly spelled-out. So we suggested that perhaps such a system could be set up to encourage his remaining in the classroom as much as possible. Everyone agreed that he's ready to do it, so Cherie (B's consultant teacher) said she'd think about how to go about it. A friend of B's gets to bake something on Friday if he accomplishes his weekly goals, so maybe he can join in the baking fun (there's a full kitchen there for the students to use...!).

The other things I updated everyone on were the new way of looking at the OCD (the pokemon trainer paradigm) & that we are slowly reducing B's dosage of zoloft, in the aftermath of his inability to tolerate the target dose for the OCD symptoms. We were trying to increase the zoloft to the point where it would treat the OCD anxiety so that we could finally wean B off the seroquel. It has become clear that B does not tolerate SSRI's (& in fact, the seroquel has been one of the medicines that has counteracted their tendency to rev him up) so it's time to either see how he does on a minimal dosage or switch him to a non-SSRI anti-depressant (assuming they even work in kids). We'll see his psychiatrist next week to try & sort this all out. Interestingly, in the wake of the zoloft reduction we have been able to reduce the seroquel as well, since it was having a sedative effect due to the lower dose of zoloft. There is a part of me that would love to toss every medicine out the window entirely... but I have lived with this kid without any help from medicines & the anxiety is just too overwhelming for him. He tried to commit suicide when he was 8 years old because he couldn't face the anxiety, so we are committed to finding something that works & allows him to enjoy his life.

The other person we updated today about the meds changes & new way of imagining the OCD was B's psychologist, Dr. M. He was really interested in the pokemon training idea, & very encouraging. He quizzed me a bit when B & I explained to him about my OCD/pokemon (a Pichu). B likes to talk about my Pichu, so Dr. M asked me if the Pichu had ever helped me out... & I told him what I'd told B about it helping me to live with my very unpredictable father when I was a child. Then Dr. M asked me if I find that it helps me now, & I told him how it helps me by making me very meticulous about details. I also described how I've had to overcome (train my Pichu) some of the perfectionist tendencies, too, so they wouldn't drive me crazy. This quizzing is a technique that Dr. M has used before, which allows B to pick up information in a non-direct manner by overhearing adults chat about things. What kid doesn't like to listen-in on adult conversation? B played with his new bionicle (earned just today with the current behavioural charting system) while he listened to us. He told Dr. M all about the "neh nasai" pun & made Skitty noises for him. I added that we were trying to put a more positive & manageable spin on things because B's image of fighting a parasite in his head seemed awfully scary (& Dr. M agreed). He added that the goal is not to fight the OCD but to come to live with it as peacefully as possible (hence his quizzing me about the positive affects of having under-control OCD). We acknowledged that B still has a lot of his training journey to go, & that it's hard sometimes & discouraging. Sometimes (like after school today) B will hate the OCD/unruly Skitty, but we were able to reinforce for B that these feelings aren't forever. That as he gets older he will learn ways to feel more in control. I left them to their "training" after about 15 minutes of our appointment, & when they came out they were talking about being on the same pokemon training team :)

B told me this evening that the OCD was also a bit like having InuYasha as a companion. It's rude & unpredictable, but can do positive things. I smiled to think that B is trying to find ways not only to express what he's feeling inside & talk about it, but to internalise the positive message as much as possible. Not to minimise his strong, unhappy, bad feelings... but I think that a positive outlook is a learned thing. He is willing to learn & that's a wonderful start.

Tuesday, October 24, 2006

Change is in the air...

The pokemon model of OCD is still working after 2 full days :) B has christened his OCD as "unruly Skitty" (to differentiate it from his Skitty plushie, I think). Yesterday when we were on the way home from school I mentioned casually that my Pichu hadn't given me any trouble that day, so how was his Skitty? B reported that, although occasionally overwhelming, it hadn't been too unmanageable, which was reflected in his consultant teacher's "awesome" description of his day. This morning on the way to school B was ticcing so loudly that I could hardly concentrate on driving, but when I told him his Skitty needed some training he got it back under control much more quickly than usual. Later today, when I arrived at school just at the end of music lesson, B was sitting in the circle with the other kids with his attention on the teacher. I was really pleased. By this time of day B is usually wandering around nervously waiting for me to come to get him or halfway to meltdown. Something has surely changed...

After music class was dismissed B's teacher, Mr. Joe, saw me & told me he wanted to talk to me. Joe is an awesome teacher & B has loved music with him ever since third grade, when the kids change from the primary-grade teacher (who is also excellent) to the "big kid" teacher. I had been concerned that B's inability to cope most afternoons would affect their good relationship, so I'd been hoping for a chance to talk with him, too, & was also curious as to why Joe wanted to talk to me. He hauled me into the privacy of the special ed. room, closed the door, & said "Does B have a savant-like ability for memorisation?" I was not expecting quite this question, but upon reflection I admitted that most people think he does. B's ability to quickly memorise his lines for the class plays is well-known (& respected) by his teachers, as well as his ability to ad-lib appropriate (& really funny) lines as he goes. Joe looked a bit exasperated- "Why didn't anybody tell me?!" I was not sure... probably because everybody takes it for granted... Or maybe because we've been so distracted by the tough time B's been having with the transition to 5th grade (I made sure I mentioned this to Joe). This is the first year that B's class is not only doing a class play but a musical play with Mr. Joe. They were working on the play today in class & I guess it started off badly for B because he couldn't find his script (it was in his desk, where it was supposed to be, of course). Joe had him look on with another kid, & saw B reading a bit, then, he said, B started doing his lines without looking at the script at all (B says he snuck a few peeks :) & then ad-libbed nicely when things got slow. Joe was amazed. He warned me that he was "gonna push him, now", which is fine by me (& by B, too, when I passed the message on to him). I couldn't help but grin. This year has been so tough so far for B that it was a lovely lift to have someone so excited by what B can do. I decided to go looking for B's script before we left, so Joe would know whether or not B needed another one (found it) & while I was in B's classroom B was getting his things at his locker, talking to Joe. I guess being at loose ends for those few minutes got the "unruly Skitty" going & when I got to the locker Joe had a concerned look on his face & told me quietly that B had hit his head on the locker... B was worried about having bruised his head, but I told him we could put ice on it at home. We thanked Joe for his input :) & I reflected to myself that it was probably a good thing that he be reminded of my kid's strengths as well as difficulties...

On the way home in the car B said that music class was the best part of the day (yay!). I asked him if he found Skitty getting particularly unruly when he's between things at school, & after thinking about it B agreed that was so. I told him that he might want to focus some training on how to keep Skitty comfortable during those times- maybe talk about it with his psychologist this Thursday when he sees him. We came up with another code phrase for "calm down"- "Neh nasai!" which is japanese for "go to sleep!" It's a pun, too, because Skitty is one of the few pokemon in the english translations that says their japanese name (pokemon don't usually talk, but they say their names over & over, rather expressively, as their language, sort of...). In japanese Skitty is "Eneko" & says "neh! neh!", hence the fun of telling Skitty "neh nasai!". It also mirrors InuYasha's "Osowari" command ("sit boy!") that Kagome uses to control him. B loves to sit like a dog on the floor like InuYasha until I say "Osowari!" & then he falls on his face :) Tying unruly Skitty to InuYasha is probably another natural for B, since he loves InuYasha so much, & it further removes some of the fear B has around having OCD. I am really looking forward to sharing our new ideas about OCD with B's psychologist... :)

Monday, October 23, 2006

Paradigm shift...

This past weekend can only be described as quietly wild. The ups were not huge, nor were the downs, but it was a roller-coaster ride nonetheless. C took point on Saturday, since I was supposed to go to a handspinning guild meeting for most of the day (but ended up nursing a back spasm instead, which was disappointing, but at the same time a needed rest). They had plans for the day- start off at the science museum, hit the museum cafe for lunch, then off fo a swim at the university pool. Things went very well until the swimming part, when B had an OCD thought about going into the building where the pool was. B has been reliving something from last summer that originated when he was eating lunch in the cafeteria at another local college during computer camp (something he saw on a Cartoon Network show that was broadcast on tvs in the cafeteria to keep the kids amused- B was not), so C wasn't completely surprised that the thought came up at another college-type setting. They came home instead & B spent a good part of the afternoon laying on the floor in his room moaning about how he hates that cafeteria & the left side of his body (another OCD thing). He recovered sufficiently before dinner to lego some, enjoy a nice dinner with us (dad made biscuits & soup, so B had tofu instead of the soup part & jam on his biscuits :), then went upstairs afterward to lego some more. I was pleasantly surprised to discover, when I went up to get him for dessert, that he'd found the station that was broadcasting Prairie Home Companion on the radio in his room & was listening along with us (we'd had it on downstairs through dinnertime).

Sunday was similar, with moments of OCD-thought paralysis & meltdown & then others of supreme fun & silliness. He didn't want to go into his Sunday School room because of a thought, for the first time in years, but fortunately one of B's teachers is a clinical psychologist, so as I hovered at the doorway, having coaxed B into the room, this teacher blithely waved me back to my own class & I knew B was in capable hands. We brought our younger (16-year-old) goddaughter home to have lunch with us after church & she made a comment in the car that "you could tell she hadn't had her pill today"... & it occurred to me that B didn't know that she had ADD & takes medicine for it, so I asked her to tell him about it, which she did unselfconsciously. We ended up giggling over the t-shirt that says "Some people think I have ADD but I think- oh, look! There's a chicken!". She talked about having "chicken moments" which was really neat (B loved it). We decided B's t-shirt would read "Some people think I have Asperger's Syndrome... Oh, look! A temporospatial anomaly!!"

After C came home (he had a church meeting) he & B played bionicles in B's room while I napped on the sofa. C says B once again became morose & moody- he thinks that B gets out of sorts when I'm resting, even though he really wants to play with dad. They did decide that we'd go out to dinner, which was fine with me. C told B that if we did he would have to do the interactive newsletter from school with us at the restaurant & B agreed... he's been avoiding doing the newsletter all weekend because it's too much like homework, but it's a really great way for us to find out what's going on at school, so we like to have him read it to us & do what it asks ("explain inertia to your parents"). It resulted in a nice discussion of physics over dinner & an even more hilarious conversation in the car on the way home, when I discovered that C had had B sign on the line that says "My child has read this newsletter to me- signed: parent" & I asked B if he'd been holding out on us that he had a child. He giggled ferociously over that one :)

This morning B did a great job of getting dressed & getting his own breakfast, but came up short when something in the Heifer project catalogue he was taking to school (his class is doing Heifer as a community service project) got him ticcing. I will admit that I was feeling exasperated, thinking about all the ways that the OCD limits him, so I recalled the thoughts & tics that had bothered him all weekend & we talked about how miserable they were making him & how they were preventing him from doing what he wanted to, like go swimming or even hold a catalogue. He sat on the floor unhappily, trying to explain how the OCD & tics felt. He said softly that one of his biggest OCD fears is that some day scientists will discover a way to control peoples' minds. I told him that this didn't surprise me because the OCD seems to control him already. He said that the OCD feels like there is a parasite in his brain telling him what to do. He feels like he wants to fight it but he can't. He asked me why he has the OCD in the first place, why does he have to have OCD?

So, I told B that I've come to think of the OCD as part of his autism spectrum charactersitics, & that, as he knew, everybody on the spectrum has different combinations of characteristics. I told him that his combo includes Aspergers, OCD, & Tourettes (although the Tourettes seems primarily an expression of the OCD anxiety), & that he likely has the OCD because I have it, too. I explained to him that my OCD was triggered by growing up with a very unpredictable father, who could not be relied upon to respond the same way twice to things. I told B that I never knew when I would get a smile or get hit, so the OCD seemed to help me feel like I had some control over my life (even though it really didn't). I told him that I suspected that he knew the feelings where the OCD tells you if you do a certain thing, like count things or touch things, then everything would be ok. We know that isn't true, but the OCD is strong & hard to ignore. B agreed he'd had these thoughts. Then I told B that the image of a parasite in his brain was pretty scary... & that I believe that how we think about things can truly affect reality. I wondered if he might be able to think of the OCD as... maybe a pokemon that needed training, rather than a parasite to be fought. I told B that I have decided that the image of fighting things is not very positive or productive in my life, & that even though I think of myself as a Jedi, I think of Jedi as peacemakers, not fighters. B grinned at the pokemon image, & we talked about May (one of the characters that travels with Ash & Pikachu learning how to train her pokemon) & her unruly Skitty who won't stay in her pokeball & wreaks havok on occasion. B happened to be wearing Skitty in his beltpack this morning (the link is to a picture of Skitty), so he happily started saying "neh! neh!" as Skitty does. We were going to be late for school, so we brushed teeth & got coats & shoes on- B started swearing at his zipper because it wouldn't zip, until I intervened & recommended that he take it slowly & actually look at the zipper (he rarely looks at things like this & is frustrated easily when they won't co-operate). In the car he started to cry, saying that life is too hard... I wondered out loud if thinking of life as a training journey, like Ash & May, wouldn't help. We recalled some of the tough things Ash has had to face in his pokemon training & B agreed that life could be like that. I told him that his psychologist was like Professor Oak (Ash's mentor) & that I was kind of like Brock, who has a lot of experience training pokemon but is still learning. B asked me what kind of pokemon my OCD is & I decided it's a Pichu (a very cute & cuddly pokemon) & then he asked about how Team Rocket (the bumbling bad guys) fit into the scheme. We decided that his Tourette's was probably his Team Rocket & my father was mine... By the time we got to school B seemed relaxed & happy, ready for the day.

I really like the image of B's journey through life as training, rather than a battle. I love the image of B training his very frustrating OCD, rather than fighting it. As we were talking about the OCD, I realised that the image of the OCD as a separate thing from himself is neither accurate or helpful. The OCD is part of him, & a currently unpleasant part of his life. I believe deeply that how we think of our life creates our reality. If we can reinforce a gentler image for B, then perhaps the scariness of the OCD will ebb & he will feel more successful... as George says, in Yellow Submarine "It's all in the mind...:" I would like B's mind to be a friendly place for him, & I think the best place to start is by imagining it to be that way. I hope today has laid the groundwork for a paradigm shift that will allow B to come to terms with his wayward thoughts. As I explained to him about my Pichu (OCD)- it's mostly under control, but it's alive & sometimes does surprising things. That pretty much defines life, too, doesn't it?

Friday, October 20, 2006

More than meets the eye...

We are a take-apart family. No defunct appliance can expect to arrive safely at the landfill if it's been in our house. Just about anything that has screws is fair game... :)

We started our take-apart career when B was 6 & our very first VCR bit the dust. I had always been curious about how the darn things worked, & thought, virtuously, that taking it apart might not only satisfy my curiousity but help strengthen B's fingers & fine-motor skills with all the unscrewing with the screwdriver... As it turned-out, I had to pre-loosen all of the screws because they were pretty tight (it was comforting to think that it had been a well-made machine :), but B spent a very happy hour at least removing teensy screws as we uncovered circuit boards & gears & neat little clicky things. By the end of that session we were both hooked on the take-apart thing. B wanted to play with the innards, so after sorting them & removing anything sharp or greasy I put it all in a box in his room. Within a couple of days B had built a "computer" with by festooning his playskool tool bench with various parts, some still ribboned together with wire tapes. It was really impressive & B loved to fiddle with it, fine-tuning the look & imaging what it "did".

The summer B was 7 we signed him up for Camp Invention, whose main cachet was the take-apart sessions, with the requirement that you bring an old appliance from home to eviscerate so that something new could be created from it. B went to Camp Invention for 3 summers & always came home with something imaginative, although the only disappointment was that the new gadgets didn't really do anything...

Our next big take-apart project after the VCR was B's beloved Apple Performa computer. It was only a year younger than he was & had been lying fallow after the purchase of our fancy G4 until B hit 3rd grade & we thought he'd take better to doing homework if he had his own computer. We were right. B discovered things about that computer that we'd never suspected it could do, although his brief obsession with password-protecting files came to a teary end when he couldn't remember the passwords... His buddy/mentor Ck showed him how to make the computer talk in various voices & B loved to type in hugely long numbers & have the computer say them. We'd be driving in the car & B would ask me "Mom, what's bigger- a nonillion or a sextillion...?" **roll eyes** Sadly, B's computer only made it 3 months in his possession before it went into hard-drive failure (I will never forget that clicking noise as we tried to boot it up...), but I had happily showed him how to backup his files on floppy & he barely lost anything. I was able to find a reconditioned mac powerbook laptop that's only 2 years younger than he is (a computer buff friend identified it as a Wall Street model & said he'd had one just like it, once upon a time...) & I was able to transfer B's files to this computer, which he still uses.

After looking at the ruined husk of the Performa CPU for a couple months (B refused to part with it) I convinced him that we should take it apart & he agreed. This time, though, we had a professional in attendance. B's best buddy's father is a software designer & CalTech graduate who builds computers for fun (he built B's non-mac pc from bits friends had given him so that B would have a computer that would work with his lego spybots' software). So when we took the Performa apart he explained what all the parts did, showed us how the optical drive worked, rhapsodised over the quality of the mac speaker & mac craftsmanship in general. I learned so much that afternoon... The only part of the computer that B wouldn't take apart was the hard drive, since it was the "soul" of the machine, & he uses it these days as a paperweight. I took the metal exo-skeleton, cleaned it up, bent back any sharp bits, & B uses it as a shelf unit, on top of a bookcase in his room, because it has so many cool little nooks & crannies. The rest of the bits are being saved because B wants to open a junk shop some day...

Tha past couple of days have seemed about right for more take-apart projects, so yesterday we tackled the defunct phone/answering machine we'd been saving. B had decided that he wanted to gut it & use the shell as a secret hiding place to cache special stuff in his room. So I glued all of the buttons back in place so that it would still look intact. The boxy base of the unit is a pretty neat hiding place, actually, & the top snaps back on pretty easily without needing the screws to hold it together. B plans to use the portable phone part clipped to his belt as a mobile storage unit :) He's become quite independant with handling all but the most stubborn screws & dad's ratchet-style screwdriver makes the take-apart quite pleasant.

Today's project has been much more complicated- my very first printer/scanner/copier, that gave up the ghost last August. I think that B had hoped to also use this as a secret hiding place, but when we finally got it opened up we discovered where all the ink I'd run through the system trying to clean the nozzles before realising that the thing was actually broken went (into the bottom, which we discovered to be lined with absorbent felt- pretty good design!), so the shell went into the trash. But there are still treasures to be unearthed- B's found 2 motors so far & some really cool gears in the scanner part. The loose parts are being saved for the junk shop, of course, but I keep thinking that maybe some of this stuff will come in handy someday if we ever get into building 'bots (did I say "if"?). If nothing else we have a very cool collection of circuit boards & other groovy stuff- maybe a future Halloween costume? You never know... :)

Thursday, October 19, 2006

Ups & downs...

B is continuing his pattern of having pretty good mornings at school & then the afternoons becoming more stressful as it gets closer to the time to go home. Some days he's ok by the time I come to get him & some days he's ticcing like mad & runs out the door ahead of me. Sometimes all it takes is a mis-communication & he's completely out of sorts, like yesterday afternoon when he'd negotiated an alternate activity to gym (he's been having a lot of trouble getting into the fitness stuff like running in place & then taking their pulse that they've been doing lately) & then another teacher forgot & asked him to do something else. He was so upset he couldn't even talk about it on the way home (his consultant teacher, Cherie, told me about it this morning). The gym thing is a worry to us, since we want him to be as physically active as possible, but B is the sort of person who doesn't like to participate in things that he doesn't see the point of. I think that it's part developmental (in that he hasn't moved into the stage where he "gets" altrusim) & partly who B is. The bottom line is that, these days, if something gives B anxiety there's no way around it. We can't have him melting down every half hour from anxiety- particularly at school. We have been trying to come up with alternatives to gym that everyone is happy with. We'd arranged to substitute fencing for gym, but then B had 2 fencing lessons that had to be cancelled due to his being in such a state after school he couldn't cope. Yesterday he called me mid-morning from school... "Mom, do I have a fencing lesson today?" I explained that he didn't because he hadn't been able to go to the last 2, & if we keep making appointments & breaking them his teacher wouldn't want to make appointments any more. B was bummed & I asked him if he was worried about gym that afternoon. He sighed a breathy "yes". I reminded him that if he could commit to swimming every weekend he might be able to parlay that into gym credit. He said that he & dad had talked about it on the way to school. So I told him that he could try to work something out with Cherie & Ryan (the gym teacher) & that I was sure they'd be reasonable. He hung up & I crossed my fingers... And, he did work something out but then it went a bit haywire (as mentioned above). C & I added this to the list of things we wanted to discuss with B's psychologist yesterday afternoon at our meeting with him.

There was a lot to talk about- B's recent zoloft crisis, the tough transition to school this year, the heightened anxiety that has him needing almost constant companionship when he's at home (not all the time, but a lot of it), school's request for advice from the psychologist about how to better help B deal with school anxiety. This was the first time in Dr. M's nearly 5 years of working with B that he's had a request for help from school & we were delighted by his positive response to this. He just told us to have his teacher call him & he'd arrange to meet with them at school. I knew that his teachers would be delighted, too. Dr. M's been pleased with how responsive B's school has been over the years, so I think they'll get a lot out of the visit- & B will be the ultimate winner :) As we met with Dr. M I became aware that we were going over familiar ground in some ways. How to cope with B in severe anxiety mode, how to choose our battles... but there were newer overtones, too. How to deal with oppositional behaviours at home & at school. B has mostly been free of surliness in his dealing with us & others, but some snarkiness is becoming more common, which I see as a developmental thing. We'd had a run-in a couple afternoons ago when I called B out for lashing out at me while I was helping clean up a mess he'd made (ramune accident), & B ended-up in a heap on the floor because he felt bad about what he'd done. Dr. M said that it's important to call B out when he does this sort of thing, since he needs to learn that it's not appropriate, but it also important to find ways to do it that actually teach B something, rather than his going directly into "I'm a shithead" mode. I have been trying an empathy approach- that this is normal behaviour & that all kids need to learn to think before they speak, since it's not innate (I likened it to potty-training :) & B seemed to respond well to that. See, this is why I get the shivvers when people try to tell me that B is already a pre-teen. He's only 10, for goodness sake... but he is starting to show the teen behaviours & I just have to be ready. We also realised that, when it comes to B's ability to cope with stress, a lot is still to come as he continues to develop. So a lot of what we're doing (& need to do) is keeping him together while he grows. Whew!

All in all it was a good meeting with Dr. M & C & I felt that we came away with some solid new ideas & support for strategies we're already trying, plus the promise of a school visit. As I mentioned above, B was upset on the way home from school & really looking forward to playing bionicles with dad when he got home from school (Wednesdays are special because dad is home so early). I've come to see the "bionicles with dad" as a big stress-reliever for B these days. I think that it fills the need B has to play socially with his action figures, but that dad is much safer to play with than another kid would be. C finds it wearing, as I know I would, but he does it. He's a great dad :) When C had to go out for a while B & I watched a few episodes of "Fruits Basket" in japanese & did our usual shout-out of words & phrases we recognise. B is recognising verbs, too- yay! Then he sat forlornly on the kitchen floor for 10 minutes till dad came home. They played, C ordered pizza for dinner (it's hard to cook with a cling-on :) & during dinner we talked about how soon Halloween will be here. B has decided that he wants to be a spy for Halloween. This is literally the first year since B was 6 months old that I will not have to make his costume, which is both a relief & slightly disappointing :) He had decided that he wants to dress all in black & festoon himself with his spy gear, so I've made sure he has black pants & turtleneck on hand. Sooo... as we were talking about Halloween at school (the kids will dress-up for half the day & have a party) B said "I'd like to wear a white tux jacket"... C & I looked at each other in puzzlement, then we remembered that B has been rediscovering his Spy Fox computer games & that Spy Fox wears a white tux... I grinned & explained to B that we don't have a white tux for him to wear, but that he will have the black clothes we'd talked about. He kind of back-pedalled mentally & then decided that that would be ok. Dad added that he could wear another colour suit-jacket but B had reconfigured already & was happy.

This morning when I dropped B off at school I gave Cherie Dr. M's card & told her he wanted her to call & set up a visit. She was really excited :) C was doing well so I went to greet at the door (my official parent-volunteer job these days) as the busses unloaded & parents were bringing their kids in. Paula joined me after she'd got the bus kids & we chatted for a bit. It was such a lovely day she said she might call a fire drill. Knowing how B dislikes the disruption, I asked if I could warn his teachers & she said of course... so when I went up to finally kiss B good-by & exchange "itterasshai" & "ittekimasu" with B, I whispered the news to Cherie. B was observing a friend's unique technique for separating eggs (they were baking a cake for a hedgehog wedding that morning- stuffie hedgehogs :) which was to catch the yolk in his hand without squishing it. B was totally grossed-out & enjoying it very much :) I headed off to grocery-shop with a happy feeling that my kid was, for the moment, in a very good place.

Wednesday, October 18, 2006

TV=autism? Not convinced...

Kristina's post today in Autismland about her take on the new research study that finds a link between autism & tv inspired me to actually read the paper. There's a link to the paper at notmercury's site (& his parody post is pretty neat, too) that downloads in pdf. I was a bit long-winded in my comment to this post, but this is just the sort of research that gets wide media exposure but does little (in my opinion) to help the autism community or truly elucidate the complexities of autism & life with autism. It causes great furor but to what end...? Here is what I commented at Kristina's site:

OK. I read the paper (not mercury has the link) & I really appreciate your well-thought-out refutation, Kristina. My main discomforts with the paper are that they contunually refer to autism "developing" in early childhood as if it's an established fact that this is how autism happens. I don't see any definitive proof anywhere that this "development" hypothesis has been proven & like you, we were aware of B's differences from infancy. Another part of the paper that your post clearly refutes is the part beginning on pg. 15 where they look at the "high risk" younger siblings of already-diagnosed children & how long it takes them to visually disengage from the tv screen, assuming that a longer disengagement time will predispose them for autism. As you have clearly stated, though, some autistic children don't visially engage the screen for very long at all- were they "lower risk" for autism by exhibiting that behaviour? Wouldn't it have been a good idea for these researchers to look at the actual tv-watching habits of autistic children? Interestingly, by the standards of this study, B is not autistic (they excluded kids with Aspergers, PDD-NOS & Rett's- see pg. 7) but he was & is a tv-watcher with very good visual engagement of the screen- I wonder how their narrow definition of autism affects their conclusions? I also have trouble with the part on pg. 23 where they go into the gender aspects of the study, which show that boys are more likely to watch tv & more likely to be autistic- as if these really correlate. It feels to me as though they have taken apples & oranges (defining only macintoshes as apples & excluding the rest of the varieties) & found that apples can become oranges under certain circumstances. This quote from pg. 27 sums up my discomfort with the conclusions of this paper nicely:

"One possibility for why the California data does not exhibit a positive correlation between precipitation and autism is that there is an omitted variables problem. That is, there could be another important variable that is correlated with television watching and also correlated with precipitation in the California data set in a manner that results in no significant relationship between autism and precipitation in our test of equation (4) using California data. "

California is their gold standard in this study because the reporting on autism rates is seen as more reliable & goes back farther than any other place in the US. But California does not support their hypothesis...? Another thing that gives me deep misgivings is that they are not able to directly prove the tv-autism link, but only through the mediator of precipitation. As I mentioned in an earlier comment, I know from my own research days that you can prove practically anything you want with statisitics,, depending on how you look at the data.

Bottom line for me is that I wish this study not only had a better basis in the science/medical realities of autism (since it is speculating on an "effect" from tv watching that produces physical changes in a young child) but had been able to give some useful information as to the mechanism for these possible changes to occur. Their conclusion is a lukewarm "we want to emphasise that young children should not watch tv- just in case". I know that the purpose of this study is not to assist people like me who are already raising children with autism (although by their standards B is not...) but the attention that this study has drawn in the media is way out of proportion to it's usefulness in my opinion. Sorry to go on for so long, Kristina...

One of the things that has helped our family in navigating the maze of suggested treatments & ways of approaching B's autism is that both my husband & I are trained in science & we can read a paper & understand the statistics (as well as anyone can, I suppose). We have been unconvinced & unimpressed by the "science" coming out of the curebie camp all along & have never felt that we had to try everything & anything to "help" B because it's obvious to us that a lot of what's out there is voodoo thinly disguised as science. When one of B's doctors makes a recommendation we research it before acting. I wish more parents could more easily navigate the mass of information, speculation, & opinion that we all face. I also wish that the media actually felt a responsibility to report news, rather than sensationalise hot topics that will get a lot of attention. Autism is hot news because if the fear it engenders, I'm afraid. I wish that we could get past fear & have a greater understanding of the realities (since every person affected by autism is different, as Kristina notes) of life with autism.

Monday, October 16, 2006

B graffiti...

This was B's comment on life this morning :) I was really surprised to see him writing on the little, magnetic white boards I keep on the fridge, since B avoids writing whenever he can... I was also very gratified that he added the "home rocks" bit. Outside of this unusual & mild protest, B was pretty mellow this morning. When we got to school he was eager to show me the progress that they've made on his "safe space", a former broom closet (without a door) outside the special ed. office on B's floor. All of the tables, brooms, & other detritus have been moved out, unearthing some very nice bookshelves (mostly filled with books, but with a little extra space for B's stuff) with an air-conditioner perched on top. I teased him that he didn't have a light yet, but he has an air conditioner (but no window :) & he grinned. (Later in the day they discovered that there is a light in there, much to everyone's delight.) The next goal was to find a small desk or table that he could use to work on, since he'll be using this space mostly when he's too overwhelmed to be in his classroom. I kissed him goodbye as he was setting up a chess game with a friend & went to see if I was needed to greet at the door, finding Paula & another friend, Kim, there already. After we had caught up for a while, & greeted parents & kids coming in to school, B came down looking for Paula to ask her assistance on the table hunt, so they happily went off to scour the school for something suitable leaving Kim & me to continue chatting, which was very nice :)

It was laundry day, but I decided to treat myself to a trip to the asian food store in between loads. I bought more tofu (of course :) & finally found some tobiko- the little orange fish roe that B & I adore. It was a chore-ish day mostly, but the house is better for it. I went to get B at 2:00 as he'd requested, but he was doing so well that I could have come later. It was a lovely change. B said that he & Paula had found a little table, so his room is all set up. He said that today was the first day he's felt safe at school since moving upstairs & I could tell it was so because he was so calm & undistressed. He said he'd had an up & down day, with some tics, but nothing too overwhelming. Such joy!

I had bought a ramune snack for us at the asian food store, so we re-watched some old episodes of InuYasha while drinking it & called out words we recognised in Japanese in the dialogue. B then went to lego for quite a while, then we watched a couple Fruits Basket episodes in japanese before dinner. We had rice, tofu, salad, & tobiko & really enjoyed it. C had an office meeting so he got home after dinner, teasing us that he'd narrowly missed the tofu :) B requested an o-bento (japanese-style lunch) for lunch tomorrow (I have little bento lunchboxes that can be microwaved & B occasionally takes one to school) so I put some leftover rice on the bottom & slabs of tofu on top, with soy sauce sprinkled over all. As he was putting together the rest of B's lunch, C mentioned to me that he's so happy that B's finally settled on a protein source, in the wake of swearing off meat. We've worked very hard not to make a big deal out of food & eating, particularly since we've had to keep such a close eye on B's diet with the weight-gain side-effect of the seroquel. It's been hard not to fuss at him about the lack of protein in his diet for the past few months, but the low-key approach is now paying off in B's enthusiasm with his "discovery" of tofu. I suspect that he'd reject pretty much anything we suggested if we'd pressured him at all about it. Next we'll try tempe! (fingers crossed :)

Sunday, October 15, 2006

Weekend highlights...

Another weekend has zoomed by... and though B's anxiety level is still higher than usual, he did have some fun as the time sped by. He legoed like mad Saturday morning, and although I could hear intermittent tics coming from his room, every time I asked if he wanted/needed some help, he said no. He has been putting together a combined bionicle/InuYasha storyline & creating legos to act it out, including a bionicle that is a matoran (bionicle villager) buddhist monk... the fusion is pretty mind-boggling. B is really enjoying it :) For lunch we had tofu, which made B very happy. Then we put together our japanese sentence of the day, asking our teacher, Tomoko, if she had liked InuYasha (we had lent her volume 1 last week). I made a set of hiragana letters printed on card stock & then cut into little squares so that we could practise "writing" hiragana without B actually having to write it... so he was sitting on the heating duct in the dining room warming his buns & happily putting the japanese letters together like a puzzle to make our sentence ("anata wa InuYasha ga suki deshitaka?"). We even used our newly-learned past-tense of the verb. Tomoko was impressed when she saw it :) She had put together a lesson based on InuYasha & I have never seen B so engrossed in a japanese lesson. Not only did she use a conversation between some of the characters to illustrate the "I want" verb form, but she illustrated some differences in ways of speaking (casual, guy-speak, girl-speak) in a way that really made sense to us. B really enjoyed speaking InuYasha's lines in the conversation, & then Tomoko explained the contexts in which B would say things the way InuYasha does, since InuYasha usually uses very rough guy-speak. We talked about the different ways a man can say "I" (watashi-wa, boku-wa, ore-wa) & when he'd use them. We talked about the differences between dad-speak & mom-speak, too. It's all pretty amazing. Then we made sentences using the "I want" form of verbs, figuring out how to say "I want to go to Japan" (B said "boku-wa nihon-ni ikitai desu") & "I want to buy Pokemon cards" ("boku-wa pokemon kaado-ga kaitai desu!"). I chimed in with wanting to buy fabric & origami paper... I think we're all set for our shopping in Japan :) We sent volume 2 of InuYasha home with Tomoko to facilitate our next lesson. I know I've said it before, but we are so lucky to have her for our teacher!!

After japanese B & C went to the Y to go swimming, one in the suburbs that features a water slide & a "lazy river" water ride. C said that it was very crowded, but B managed to cope for 45 minutes in the water & seemed to have a good time. When they got home he went right back to legoing & I noticed that the tics were practically non-existent, which was amazing for the late-afternoon time of day since that's usually B's most difficult time. He was so obsessed, though, that he wanted to lego through dinner- C was pretty laid-back about it, since B was getting a lot of enjoyment out of his lego project so B actually had his bath before his dinner (I did make sure he took his dinner-time medicines before bath-time though, since he needs the clonapin to go to sleep...). I read B a chapter of "The Dark is Rising" & sat with him for a few minutes before leaving him to fall asleep on his own, which he was able to do with no trouble.

B was very excited Sunday morning because he'd finally earned the first of the Toa Inika (bionicles) with his behavioural charting. He had negotiated with me to be allowed to put it together after breakfast, before going to church, agreeing that he'd leave it half-finished if he couldn't get it done before we left for church. He finished it though, & it became the companion of the day... he convinced dad to let him take it to church & it did seem to help him with anxiety, although he got stuck with a tic up in his Sunday School room before the service started & wouldn't come down. I went up during the first hymn & he was calmer, so was able to convice him to come into the sanctuary with me, since I was uncomfortable with him being alone up there (& I told him so). The kids & Sunday School teachers leave the service after the first 20 or so minutes, so it wasn't long before he could go up with his teachers, while C & I went to our classes to teach. After church & lunch B was going to a school friend's house for the afternoon, which he was really looking forward to. We had given this friend a deck of pokemon cards for his birthday recently & B was psyched to play the game with him. He had carefully selected some decks to bring & also some cards to perhaps trade... B was having trouble waiting for the time to go by, so we let him bring his tofu lunch into the living room & watch an episode of "Fruits Basket" in japanese with me to pass the time. While C took B to his friend's house I took a nap- still recovering from the virus. Then I had a snack & it was time to pick B up. The friend's mom mentioned that B had a bit of trouble with anxiety while he was there, mostly when there were a lot of people around (some visitors came over at one point) but she said B was very polite & just went upstairs to his buddy's room when he was feeling overwhelmed, telling her quietly that there too many people around. His buddy went up too & she made sure they we given some privacy, which was very kind of her. C told me later that B had told him that he'd also had trouble with the snack he was offered, which was pigs in a blanket, but B just told them that he was vegetarian & removed himself from the room before he needed to tic. His friend's mom never said a word to me, so B must have handled himself very well- usually meat makes him have very big tics... I wasn't surprised to find that B had done very well while there because he decompensated big-time in the car on the way home- his usual reaction when holding back big tics for a while. An unspecified trigger hit him on the way out of the house & he just managed to get himself in the car & buckled in before practically going into convulsions of tics. He was in a lot of emotional pain & at first I had no clue what was going on, except that he was moaning that he didn't want to live... This is a very difficult thing to hear one's child say. Eventually he was able to explain that something in his friend's room made him think of the Cartoon Channel shows that were shown in the cafeteria at computer camp this summer, which had upset him very much & he was re-living the upset. I told him he'd done a great job of explaining the tics to me & soon we were singing Weird Al's "Dare to be Stupid" together & he was much calmer. The tics hit him in storms, though, all evening long so we just had to ride them out. He played with the new legos characters that he'd made & his new Inika & that seemed a good distraction. I think his day really tired him out because he fell asleep while I was reading to him.

After B was in bed C & I spent some time processing all that's happened since B's zoloft crisis last Wednesday. Sometimes it's hard for me to wrap my head around it all, since I'm mostly living in the moment with B, helping him to cope. I asked C again why we are trying to get B off the seroquel & C said because the "atypicals" are not healthy for the long term (B has been on seroquel for more than 2 years now) & because they make him "chunky". Sometimes I feel like we are stuck in an endlessly repeating cycle of trying to get B off the seroquel by trying to find an SSRI that he can tolerate at high enough doses to do the trick, which we have not yet found, & precipitating crises as B reacts badly to the SSRIs... And yet, without any help from meds B does not function at all, the anxiety is too overwhelming. C said that he's hoping that B's new psychiatrist will follow up this crisis with some suggestions for alternatives to the SSRIs, perhaps another family of medicines that do not have the side-effects of the seroquel, but will allow B to have a life while he's growing up & moving into a developmental stage that will allow him to better cope with the anxiety. B's emotional pain is very real & affects his life profoundly. I know that it is controversial to talk about the use of medicines with our autistic children, but it is very important to C & I that B not be crippled by his anxiety, so much that he can't grow & learn, or that he feels he doesn't want to live. I want my child to have the best opportunities for the best life he can have & I want him to enjoy life. I am so amazed by what he is able to do when he's not in the grip of anxiety- I keep thinking of him blithely putting together a sentence with japanese letters or gleefully roaring out InuYasha's lines in the dialogue & then soaking up the cultural information like a sponge. This is the way things should be for my kid all the time & this is what we'll keep working for...

Friday, October 13, 2006

B the Go teacher :)...

B had another mellow-ish day today- hooray! School started off just fine, & when Cherie remembered that they wanted B to stay a bit longer today to teach his class to play Go, he said he'd be glad to :) So I said I'd be back to get him at 2:15 instead of 2:00...

I saw my wonderful chiropracter next, who once again tried to remediate the stress & distress of life that goes straight to my spine. Then I went back to the grocery store & bought more tofu :) Thanks to Kristina & Mum is Thinking's comments & suggestions yesterday, I was able to fry 2 lbs of tofu without putting my life or the kitchen in danger... Thanks!!! I decided to cook it all ahead of time & refridgerate it for later meals (I had some on toast with cheese melted over it for lunch- yum!).

When I went to get B from school he was intent on a game of Go with a classmate whom he'd just taught to play. Another kid was watching them play, & B didn't even realise I was there, he was so involved :) I chatted with his teacher for a bit, then noticed that the classmates had started a game which B was watching. Finally their teacher signalled that it was clean-up time & B put the Go set away, amid thanks from his friends for teaching them. B has been wanting Go partners & now he has them! I am really psyched :) For the first time in weeks we left the building tic-free. B was so relaxed & mellow, happy to discuss his day in the car on the way to our weekly McDonald's treat. It was lovely. Good thing, too, because the McDonald's was no longer running the bionicle promotion -they stopped it after 3 weeks of an 8-week promo :( B was really disappointed & angry, but he handled it well. He decided he'd tell everyone he knew what had happened & encourage them to boycott McDonald's. I thought it was a pretty good strategy, myself, & must confess to very mixed feelings about it all. I was glad that the weekly trip to McD's was something for him to look forward to, but a full 8 weeks of it was not my idea of fun...

When we got home we ordered a birthday present online for a school friend, then I suggested that we look at the newest newsletter from the Pokemon Daisuke Club that arrived by email this morning (Daisuke means "I love it!"). This is a Japanese pokemon club that our Japanese teacher found for us online, & helped us to register for. There's a place there called the Pokemon Garden where your little virtual person (that Tomoko also helped me to configure, since I couldn't read all of the forms) wanders around & chats with other little virtual people & has fun with pokemon things. B hadn't checked out the garden yet, so we spent an hour virtually wandering around in there. We couldn't read all of the conversations, but most of the areas were labelled in katakana, which is usually phonetically rendered english (japanese-style english, with "r" instead of "l", etc.) so we had fun deciphering where we were & what there was to "do". After about an hour of computer stuff together I realised that I'd better get him transitioned to another activity because I needed to get dinner started. Friday night is usually Grammie night (& sometimes Paula night, too), so I like to make something nice. I decided I wanted to make a tomato curry base for the tofu cubes I'd fried this morning & serve it on rice. That way B could have tofu cubes & rice with soy sauce for dinner, along with the salad Grammie brought for greens. Getting B transitioned was not easy, though, in keeping with his recent difficulties, & we sat together on the sofa for quite a while, B with his head pushed into my side. We finally decided he'd play one of his Spy Fox computer games & I'd sit with him for the first few minutes until he felt ok by himself, & that worked pretty well. B's psychiatrist called about this time, too, & I was glad to finally hear from him. He said that some of his patients have these sorts of problems with the SSRI's. He told me that the dosage of the SSRI determines what part of the brain it affects, & that some people never can tolerate the higher dosage because of this. :( I asked him to keep thinking about other ways to approach our goal of getting B off the seroquel so we could talk about it at our next appointment. He said to keep B at the reduced dose of zoloft until we come back in, then we'll talk further. Sigh.

When Grammie came over B said hi, but kept playing, & I explained to her that he needs to be distracted these days so she & I chatted rather than her visiting/playing with B as she usually does. We had a nice curried tofu dinner- C, who's not terribly fond of tofu, said he liked it! B was delighted with his tofu cubes :) He told Grammie proudly that he'd had tofu for lunch, too. He ate pretty quickly & wanted to get back to his game, so we adults had time to chat & catch up on family news (Grammie just got back from celebrating Canadian Thanksgiving in Ottawa with her sister & family) & look at new family pictures. B was scheduled for a bath this evening but talked dad out of it, so he & Grammie sat & chatted about his pokemon stuffies for a while :) After Grammie left, C played bionicles with B for a bit, then asked me to tag-team because he needed to make his lunch for tomorrow (he's on call this weekend) & B was having tic-troubles. So I went up & decided it was time to organise his pokemon cards again, so B & I worked on that until bedtime, when I continued reading "The Dark is Rising" to him. We've been having fun discussing the book over breakfast lately, so I'm looking forward to his take on it tomorrow morning...

The days when B is less affected by the anxiety & tics are very precious & lately fairly rare, & I am glad that B is getting a break!

Thursday, October 12, 2006

A calmer day...

A good night's sleep sure does wonders... Other than a perfunctory "it's a school day", B did not protest going to school at all this morning. Big sigh of relief :) He was quite calm when we got there, going about the usual business of unloading his things into his locker & finding someone to play chess with. Cherie & I talked about our conclusions from yesterday's difficulties, & particularly B talking about hurting himself again. We decided that, until further notice, she would call me if B's tics & anxiety became overwhelming & I would come & get him. I kissed him goodbye, already immersed in a chess game, & went to find Paula & chat. Grocery shopping came next, remembering to turn the cell phone on, then home to put things away & deal with laundry. I called B's psychiatrist when I got home, & left a message to let him know what was going on & that we'd reduced B's zoloft dose in the attempt to get his equilibrium back.

After doing chores I felt restless- it was hard to get interested in anything that took concentration because I didn't know if/when the phone would ring with either school or B's psychiatrist on the line... Fortunately, I have been trying to stay ahead of B with the InuYasha dvds, so I watched a couple episodes (deciding that one of them was not appropriate for B) while knitting on another pair of socks for B (just 3 socks to go & he'll have the 6 pair he needs for the winter :). No phone calls came from anyone, though, which was good & bad...

I picked B up at our new, earlier time (2:00 instead of 2:30) & music class had just finished. B had had a much better day & everyone was relaxed. It was really nice to leave the building for once with B in a good space, chatting about his day :) He asked if I'd bought ramune for snack, since I'd gone shopping (& I had), & then asked to watch more InuYasha, which we did. Afterward, though, he had a tough time figuring out what to do next. We sat on the sofa & he leaned against me for comfort as we discussed what he might like to do. I apologised for still not feeling very well (mostly it's a cough now) & told him that I want to get started weaving another throw as soon as I'm feeling better, but for today I just wanted to rest. I suggested some computer games that he hadn't looked at in a long time, which he vetoed, but eventually settled on an older & easier bionicle game.

While shopping today I bought some tofu & tempe & TVP- I have been seriously thinking about how to better handle B's veggie-ness since he's obviously sincere about it & not going to revert to burgers any time soon. I have a bunch of veggie cookbooks, but had only dabbled in tofu dishes because C doesn't care for tofu very much (I do like it, though). Now that there's two of us that like tofu, I decided it was time to get tofu-adventurous again :) So I decided to fry some tofu for dinner, with edamame & bagels on the side. Unfortunately, I didn't actually look up how to fry tofu in any of my cookbooks (I did after dinner, hee hee), so I used too much oil & didn't dry off the tofu before putting it in the oil, so I had hot oil cascading everywhere (needed 2 rags on the floor to clean up the splashes). I was able to dodge the splashes & didn't get burned, although it was quite a clean-up after... but it really tasted great! We ate it with soy sauce & B was so happy to have tofu, he wanted to eat all of the leftovers. I told him he could take them for lunch tomorrow, though :) Having looked up the right way to fry tofu, I think we'll be having it a lot more often... maybe even C will get in on the tofu renaissance :) Next- tempe!! As we were finishing dinner B started ticcing loudly, but when we asked what was setting him off, all he could say was "a thought". C & I said that this wasn't the most helpful of responses, since it's hard to modify the environment (if possible) if we don't know what the problem is. B said that the thought trigger was "free floating", & C & I were imagining it as if it were a balloon- C asked B if we could just blow it away, which made B grin. I said we should pin it to the wall & vilify it. B wanted to know what vilify meant, so we told him it meant to say mean things about it, which made him grin even more. He & dad started telling jokes about the thought, in the vein of the Prairie Home joke show ones ("Your mama's so fat...", inserting "thought" for "mama") & before we knew it the tics stopped. A breath of fresh air :)

B & C played bionicles again this evening & then I read to B for an hour before he fell asleep (trying not to cough too much as I read). We never heard from B's psychiatrist today, so I hope I'll hear tomorrow & get his advice for where we should go next. All in all, it was a very nice relief of a day. B was ticcy & driven by anxiety at times, but not so much that he was in agony. A welcome calm in the midst of the storm...

Wednesday, October 11, 2006

Life crumbles...

This morning we got B off to school pretty easily. C took him over then zipped home because we had to be downtown for the Committee on Special Education meeting at 9:00. As we were waiting for the meeting C looked in vain through all of our recent CSE files (that he'd brought with him) for B's most recent IEP. When the rest of the team (classroom teacher, consultant teacher, special ed. co-ordinator, & speech therapist- we were armed for bear :) arrived we asked if any of them had the IEP that had been established last May, but only B's speech therapist, who works for the district, had one. None of the team had any clear idea as to why the district had called this meeting, so it was uncomfortable for all of us to be walking into the meeting cold. I think that the other members of the committee- chairperson, psychologist, & parent advocate- were surprised to see how many of us showed up for the meeting. After introductions, our special ed. co-ordinator from school told them that none of her phone calls over the past 2 weeks had been returned, so that there was no way that they could prepare for the meeting, since they did not know why it had been called or what information was needed. She explained that the personnel at our school take pride in their preparation for these meetings & that the lack of co-operation on the district's part was not allowing them to be as well prepared or as professional as they wanted to be. That said, we asked them exactly why they had called us together- & after some dithering, it appeared that they needed to change the designation on B's IEP that stated that he's in an Independant Special Classroom (ISC), when in fact B's school doesn't provide this sort of classroom (by district standards). We then explained why this had been put into his IEP- because under the state regulations at the time, B could not receive the number of consultant teacher hours he needed per week unless he was in that sort of class. Well, as it turns out, the state has changed the regulations in the past year & that is no longer true. In the midst of sorting out the reason we were there & how his consultant teacher hours were being allocated (there's a difference between "direct" consultation & "indirect", for example- who knew?) we made it clear that they could not mess with his consultant teacher hours because he's having such a difficult transition this year... When the dust settled, & after we agreed to change B's classroom designation (since it didn't seem to affect him at all), we were a bit surprised to find them offering him more hours a week with Cherie than on the present IEP (which we discovered had never been sent to us or to school...). They offered further consultation from the Autism Spectrum Disorders Team as well, which the school folks happily took them up on. One of the things thrown into the conversation was the info that the district is coming under fire because it's not graduating enough of the special ed students- the numbers are way below the average for the country- so they are being required to re-evaluate to see that every student's IEP is consistent with state regs. I had read about this in the paper just last week & was rather surprised to see it trickling down to us already... Before we left the meeting we made sure we got a copy of B's current IEP (nobody could offer any explanation as to why we'd never gotten one). In the aftermath of the meeting, when just our team gathered outside the building to compare notes, we decided that they could probably have handled the whole thing in half the time had they just allowed us to prepare for the meeting. However, nobody was unhappy with the results, & our special ed. co-ordinator had been able to share her frustration with a system that asks that an IEP- Individual Education Plan- be written for special ed kids, but that they adhere to specific regulations that do not take the individuality of students into account (B's need for more consultant teacher hours than the "usual" special ed kid, & his being in a private school with different- & better- accomodations than the city can provide, for 2 examples) & that change without notice. We are so lucky to have such dedicated teachers & therapists working with B!

We went home & I got ready for a brief doctor's appointment & C got ready to go to school to have lunch with B's class & share the cookies he & B had made Monday evening. C got home about 1:00 & said that they'd had a fun but busy lunch time, interrupted by it being picture day at school & classes trying to dodge raindrops to have their pictures taken outside. He had left B in a pretty good state of mind, but we got a call around 1:10 from Cherie that B was having a tough time & was "stuck". She put him on the phone & he miserably asked to go home, so I said one of us would go get him. I talked to Cherie briefly as C went to get him. She called back after they had left school to explain what she thought had happened. It appeared to have started with her finding B with a pin & asking him to give it to her (this is the usual routine, since B uses sharp things to rip up his fingers when he's anxious), but instead of giving it to her he dropped it on the floor. Then he refused to line up for gym class & started to tic when asked to go to gym with everybody else. He followed this up by running off so Cherie couldn't find him & then couldn't tell her why... B was scheduled for a fencing lesson after school & we agreed that it would be perfectly fine for B to substitute fencing for school physical ed., if this continued to be a problem (although I am more & more aware of how many activities B is needing to be taken out of these days...). Cherie was worried that something she'd done or said had upset B because he'd run away from her (when she was disposing of the pin she'd picked up off the floor) & she couldn't find him for a few minutes. I told her I'd try to find out what had happened...

When B & dad got home he was very subdued. B came in & I hugged him & he pushed his head into me for a bit. I suggested that we just watch an episode of InuYasha so he could calm down before we talked about school & B agreed. I was still hoping he'd make it to fencing... When we did talk about school it became clear that he'd been embarassed about his behaviour with the pin & felt he'd treated Cherie badly, & that's why he ran & wouldn't talk to her afterward about why he'd run away. As we talked B went into major tic mode, but couldn't articulate what was setting them off. When we mentioned fencing he went into a fetal position & told us there was a thought about it... My heart sank. He had loved fencing since he started last May, but hasn't been since the end of August & I was worried that he was feeling too out of the loop to continue. Then B stiffened & nearly fell off the couch as we were trying to discuss the fencing troubles, so we hauled him back up & tried to get his mind off the disturbing thoughts so he could relax. I suggested another episode of InuYasha. B was holding his head & moaning that he was bad, that he didn't deserve to have good things happen & it just broke my heart. C & I told him that he was not bad, that everybody sometimes does things that aren't appropriate, but that doesn't make him bad... We talked about how the OCD anxiety limits his actions & how others have that trouble, too, but that doesn't make them bad. He finally agreed to watch more InuYasha & C went to call the fencing teacher to cancel B's lesson & then go do a few errands. As the afternoon progressed it became obvious that B's ability to cope was crumbling. After InuYasha B wanted to go upstairs & lego, but after about 5 minutes I heard the tics begin, then the swearing & thumping, so I went upstairs to see what I could do. He was cowering on a corner of his bed & told me there was a ball in a box in the corner of his room that was triggering his biggest tic, from 3rd grade (it's a person who was another student's one-on-one aide that year- a perfectly lovely person, but someone with a strong personality & who wore strongly-scented perfume & still looms large in his anxiety). I removed the ball (he asked me to wash my hands after handling it) & then I explained that he could have called me up to do this before the tics got out of hand... he nodded miserably. I sat with him for a bit, then C came home & B wanted to play bionicles with him. While they were upstairs playing I thought hard about what has changed lately that could have caused B to be so susceptible to the anxiety & tics. I came to the conclusion that it must be the increased zoloft dose- he's been on it for nearly 2 weeks now, time enough for side effects to show up, & had similar troubles when we tried to increase his dosage of prozac 2 years ago. Over the past few days B has been steadily less able to cope without constant distraction (tv, computer games) & it just seems like the medicine change must be the reason. For a little while, playing upstairs with dad, B seemed ok (he was even speaking japanese while playing with the bionicles!), but then I heard loud wails & went up to see if I could help. B was moaning over memories of his 3rd grade tic-person again. Later, after B went to bed C told me he was remembering how he'd tried to zap himself at school by putting a paper clip in a wall socket because he was so distressed by the anxiety- not something we really want him to be dwelling on... Between us C & I managed to talk to B & get him out of tic mode. C mentioned it was nearly time for dinner & B asked if he could eat upstairs in his room. We tried to persuade him to come down to the kitchen, but no go. I was able to convince him to watch some of his library pokemon videos with me, so C made us burritos & brought them up to the tv room on a tray. He took his evening clonapin without any difficulty (sometimes the anxiety makes him unwilling to take anything) which was a great comfort, since I knew he'd be able to sleep at least... We watched pokemon videos until bedtime, then I read to him until he fell asleep.

When C & I compared notes, he had come to the same conclusion- that B was reacting to the increased zoloft. He had written some things down for me to ask B's psychiatrist tomorrow, plus a suggestion to give B less than his usual dose of zoloft tomorrow morning, so it will leave his system more quickly & perhaps he can regain equilibrium. We both wondered mightily if we should just wean him off the zoloft entirely & give up on the anti-depressants, since he doesn't seem to be getting the anti-anxiety response we're looking/hoping for. We'll leave the professional opinions to his psychiatrist, but we know what we've observed & we are not impressed... I hope that B will want to go to school tomorrow, but I am prepared to let him stay home. B's safety & state of mind are the most important considerations, & he can miss a few days until the zoloft wears off if he has to. We'll just have ot wait & see...