Thursday, December 07, 2006

Holiday busyness & an unsettling event...

Brendan had another upsy-downsy day yesterday, holding it together very well at school (participating willingly in gym class- yay!) but then melting-down the minute Charlie arrived to pick him up. The loud, gagging tics are still very much in evidence- he began the day yesterday having them & then asked/demanded of me "what is up with these new tics?", to which I could only reply "we're not sure". He's also been having really compulsive behaviour (needing to touch or do certain things repeatedly), so last evening we took a long look at the printout Charlie had on the Luvox & decided that it's very likely the cause of the increased tics & anxiety. Sigh. He was on it 8 days... Charlie called Brendan's psychiatrist this morning & left a message that we'd discontinued the Luvox & to call us if he had any thoughts or suggestions. I am ready to just go back to 75 mg. zoloft daily, which takes the edge off of the anxiety but does not require additional seroquel to counteract the revving-up effect that Brendan has on higher doses of SSRI's & then just keep him there. This kid needs a break from side effects...

We are shifting into higher gear these days, with big church events the next 2 Sundays. This week is our annual choir holiday programme, so we have a dress rehearsal on Saturday evening & then the performance the next day. The next week is the Sunday School's big event, our second annual mummers play, which Charlie & I are organising. We spent a lot of yesterday working like mad on the play- finalising the script, emailing & telephoning various participants, & I bought yards & yards of fabric for costumes & then washed it all. Although all 5 of the Sunday School classes are taking part in the play (singing songs or reciting poems) Only 1 kid has a speaking part, & that kid is Brendan :) (there are 4 adult speaking parts as well) Last year's play was more of a tableau/ritual, with various people symbolising aspects of the many traditional beliefs around the winter holidays, & all of the kids were animals associated with these traditions except for Brendan, who played a traditional mumming figure: the Quack Doctor. This meant that most of the kids sat around a lot & listened, which was not the most interesting thing for them to do. I was playing St. Cecelia & had a group of rowdy kindergarten-aged wrens at my feet, who put me in a very un-saint-like mood at one point, but it really wasn't their fault that they were bored. This year I've tried to organise things so that the kids will be kept occupied, either by their performances, putting ornaments on a tree, or watching St. George fight a dragon on the platform level of the sanctuary (safely away from them :). Brendan will be the Quack Doctor again, but this year he actually gets to try to bring someone back from the dead (also a mumming tradition, representing the rebirth of the new year). I went over his lines with him last evening & he remembered a lot from last year, so he's ahead of the game :) He's really looking forward to the play- particularly tossing mini-marshmallows out into the crowd as he asks them to try his "medicine". My main concern at this point is the dragon, since I am making the dragon costume. Today I took 6 yards of acid-green polar fleece & turned it into the body of the dragon (with room for at least 3 people & a long tail draggin' behind :), then designed a mock-up of the head, which will be attached to a fleece earflap hat. The final touch will be matching fleece mittens with long fleece claws. I found all the pattern pieces I need for hat & mittens, plus scraps of different colurs for eyes, etc, so tomorrow I hope to make the head & have the whole thing ready for rehearsal after the service (& choir performance) this Sunday. Whew! My high school class is the dragon, so I can't wait to see what the kids think of the costume (they picked out the colour & gave me advice about the "look" they wanted). The other costume crafting that has to be done is to turn yards & yards of polar fleece into matching scarves for three of the other classes to wear for their performances (they are playing carollers coming to Father Christmas' holiday party...).

A very unsettling thing happened when I went to pick Brendan up from school. I caught the tail-end of his music class as I walked up to the third floor, & I could hear the music teacher saying something to the effect of "...I know that you have a difficult illness to overcome, & I'm not sure I would be able to walk the road you're on, but you have to ask for help when you need it. Remember that someday you are going to have to take responsibility for the things you do..." It was an odd thing to hear, & something about it made me think that it was my kid to whom these remarks were being addressed. The class broke-up right after that & Brendan came around the corner to where I was wih a smile on his face. I asked him what they'd been doing in class & he said that the teacher had been giving him advice... Ulp! I was right. I asked him if he felt ok about it & he said yes... but I was very unsettled about what I'd heard. Brendan's consultant teacher, Cherie, came over to us then & I was trying to let her know that I was uncertain about what had just happened in music (she had not been there) without over-reacting in front of Brendan. We asked him how these remarks came about & he said that the teacher had been giving a few of the students feedback about their personalities & that he had raised his hand & asked for some feedback too (!). I was glad that, at least, Brendan wasn't being yelled at... Cherie decided to go get the teacher so we could talk to him, & Brendan was pretty oblivious, hanging out across the room waiting for me to be ready to take him home. The music teacher sat with us & repeated what he'd said to Brendan, & said that he felt the tics were really getting in the way of Brendan's participation in class & was trying to help him take responsibility for his behaviour. I explained that Brendan's autism & Tourette's/OCD are not really an "illness" but a neurological difference that he was born with & will always have. The teacher said that he hadn't known that & was willing to learn about it, if we would like to give him something to read. I thanked him & told him we'd be glad to give him more info, & that our goal, really, is to change the world one person at a time by educating anyone that's interested, so that there will be greater understanding of autism. I also explained that we want to tread gently when putting the reaponsibility for the tics on Brendan's shoulders because they are not completely under his control. Cherie chimed-in that the afternoon is a difficult time for him, so he can't suppress them as much as he can earlier in the day. I told the teacher to think of them almost like seizures, in terms of Brendan's ability to prevent them from happening. I really wanted to give him a powerful understanding that Brendan is not willfully disrupting things, & certainly the tics are random neurological firings that he does not have conscious control over. I also told him that we're happy to answer any questions that may pop up & he thanked me, & then did have a question, about Brendan always bringing a "toy" (usually a k'nex creation of his own) to class, & Cherie & I explained that Brendan focuses batter if he's manipulating something with his hands (that's why he makes the k'nex things...). So the teacher said that was fine & he'd relax his usual rule about no toys in class for Brendan.

On the way home in the car I told Brendan that I had wanted to make sure this teacher, whom we all like & respect, understood what was going on with the tics, & that Brendan's neurological differences are not an illness. Brendan agreed, because "what I have isn't contaigous" & we talked about how some people (like kids) can be afraid of catching things that aren't contaigous if they don't understand. I was still really unsettled by the whole thing, mainly because it had been so public (well-liked teacher making well-meant but ignorant remarks about my kid in front fo the whole class...). Brendan didn't seem fazed at all by what had happened, which is good. He did, however, tell me something amazing in the aftermath. As we were driving home he said "Mom, there's something important that I want you to know- it's hard to find the words, though." I waited patiently, & he said very softly "When the tics are really bad sometimes I say that I wish I would be murdered, but that doesn't mean that I really want to die. I like my life, Mom." I told him that my sense is that he says things like that because he's miserable & really telling us that he wishes he didn't exist for that moment, because he's in so much pain. Brendan said that that was true. By this time I was pretty teary, but said that I was glad he likes his life, & that I didn't know what I'd do without him, & he said thank-you... (& then, "are you ok, Mom?" & I said, "I will be...") Later I talked about the whole thing with Charlie & he suggested that I give this teacher a copy of the sermon I gave at church a few weeks ago, so he'll not only have a better understanding of what's going on with Brendan but our perspective on it as well. I'm also going to ask Cherie where some of the books we've donated to school on autism & OCD are, so they can be lent to this teacher.

This afternoon at home, in between playing Adventure Quest, Brendan helped me by wearing the dragon costume body while I figured out where the velcro goes to fasten it on & cut the tapering tail. He also got a good start on making holiday gifts for his teachers, beading beautiful bracelets with faceted glass beads he'd picked out. After dinner & some more AQ we all sat down to watch part of a PBS special Charlie had taped about the "Electric Company" show from the 70's that Charlie & I remember so fondly. We had forgotten that Bill Cosby (as well as Rita Moreno) were part of the cast, & Brendan giggled hysterically at some of the skits. While I was reading to Brendan (we finished "The Dark is Rising" & began "Eragon") Charlie got online & found that the local library system has episodes of "Electric Company" so we'll probably check some out over the weekend.

Tomorrow- finish the dragon! (I will take pictures :)


At 11:24 PM, Blogger Kristina Chew said...

What an awful thing to hear or to have said at all---I have also on occasion used the "it's like a seizure" --- medicalizing things seems to help (at least to convey the seriousness). I really appreciate your noting the changes in Brendan with the changes in medicine and dosage. We have had Charlie on 25 mg of Zoloft for a while; high dosages did not seem to help. Always admire your good spirit!

At 9:55 AM, Blogger Penny L. Richards said...

You know, there's a 4-DVD best of Electric Company box set available, and it's terrific. (Morgan Freeman was in the cast too, btw.) My daughter is past the "Sesame Street" level of reading, but still likes that rhythm and the goofy skits--so "Electric Company" is perfect. (The 1970s graphics and animation are pretty funny too.)

It sounds like you handled the teacher incident really well, both with the teacher and with your son.


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