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...


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