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...

1 Comments:

At 5:55 AM, Anonymous Sharon said...

Ah Lisa, poor B.
It's so difficult trying to get it right. I wish you the strength to keep trying for him, to be able to optimise things and allow him to be happy and free from this awful anxiety.

 

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