Wednesday, March 12, 2008

To fight, or not to fight...

Way back in early December Brendan's psychologist asked me to keep a "tic log", essentially a record of Brendan's anxiety moments. The purpose for this was data-collecting, to see if we could get a sense of the patterns of Brendan's OCD anxiety. I have been doing this faithfully, along with recording our responses to his anxiety on the odd chance that we learn anything from that, too, & getting Brendan's input on his time spent at school (everything has been done with his knowledge & co-operation, of course) ever since, filling 2 little hand-bound books with these observances... until just this past week. I'm not sure why I've stopped, but somehow it began to feel more & more like micro-managing, like looking at things too closely. So, without too much struggle (or guilt), I stopped. My researcher past tells me that we probably have plenty of data by now (3 months' worth) & my mom instinct tells me to follow my gut :) Brendan's psychologist is a wonderful, understanding person, so I know he'll understand, whatever the reason.

One of the good things about doing this sort of thing is that it's not hard to spot changes over time (since I'm writing everything down, I can't help but notice what phrases I write over & over again...). A few trends that have been pretty obvious are his anxiety before going to school (particularly Monday mornings) & also the extreme pain that the OCD anxiety has been causing him. One of the things that has changed noticeably in the past 3 months has been Brendan's ability to ask for help when faced with anxiety- he's gotten much more proactive about this & we are actively grateful, making sure that we give him feedback when he's done well with communicating. His school teachers have been noticing this, too. It is a wonderful, wonderful thing to see him starting to use the strategies he's been learning to cope with the anxiety. It's also wonderful to be able to give him the feedback that he is using the strategies. He's not always aware of what he does & one of the main things we've been trying to help him learn ever since the anxiety became a "big player" (almost exactly 4 years ago, just before his 8th birthday) is how to choose the most effective & positive ways to deal with it.

These days Brendan seems most vulnerable to the "fleas" (his word to describe/personify the OCD anxiety) on Monday mornings, & we have had some doozies the past couple of weeks... The first time Monday Morning-itis hit I was not prepared & it was a disaster. He was so immobilised by the "fleas" that he couldn't get dressed. I waffled between explaining that he would be going to school in his jammies if he couldn't get dressed, trying my best to enable the dressing somehow, and then trying my best to deal with the full-body tics that erupted whenever he tried to touch his clothes... There was something bad about the colour green that morning (related to something he'd seen on a show) & he couldn't even look at it. Although his clothes did not have green on them, he was surrounded by green things. Colour difficulties are a pretty common manifestation of the OCD anxiety, but they'd never been quite so intense. Finally, he was able to struggle into his boxers & pants on his own (his is nearly 12 & no way am I going to embarrass him & try to do the nether regions) & I dressed him the rest of the way. He was too upset to eat breakfast & sat in the kitchen & sobbed & hated the "fleas" & raged at the OCD & said he wished he'd never been born until it occurred to me to offer him a book, which distracted him enough to eat a banana & take his morning meds (bless you, Terry Pratchett!). By the time we got to school he was doing pretty well seemed not to have any more trouble than usual. I was a wreck for the rest of the day, though. I felt like a particular failure as a mother & it felt bad. Sigh. That wore off in time, though, & in talking to Charlie, he certainly was able to find bits where I hadn't totally blown it... I think the worst was feeling so helpless & ineffectual in the face of his pain.

Over the following week I thought about what had happened, mostly in the back of my mind as we did our daily thing. One of the things that has really been coming into focus over the past few months is Brendan's pain & resentment of the OCD. I've gone through a few revolutions of thinking since Brendan was diagnosed as being on the autism spectrum & one of the main ones has concerned whether or not to "fight" his conditions. I have written before about the use of "fighting words" when it concerns my kid or his differences, & my ultimate conclusion is that is does not add positively to the world when we fight it... but how could I talk about this with Brendan while still acknowledging his pain & his own feelings on the matter?

This week has provided a couple of occasions to work on this... :) This past Monday was definitely a continuation of the previous Monday, with the added excitement of Brendan still being "jet-lagged" from the time change. I was prepared, though, so I stuck with him verbally, from the other side of his bedroom door, as he got his pants on & then took over the rest of the dressing. Green was no longer an issue (the bigger the blow-up the shorter the duration of the "flea", I've discovered) but there is a particular shade of blue that causes problems... we got past that & he was crying on the way downstairs & plopped on the kitchen floor when we got there, so I just handed him his book & he requested an apple to eat & things were pretty ok. While I was eating my breakfast & he took a break from his book, I made an attempt to talk about the anxiety. I told Brendan that it seemed to me that his anxiety about going to school is actually pretty reasonable for a kid with Aspergers, with all of the social difficulties that go along with it. And it seemed to me that the OCD was taking reasonable anxieties & blowing them out of proportion, which is one reason it's so tough to deal with. We started calling OCD "anxiety on steroids" which made him kind of grin. It was a start...

This morning, even though he was off school for teacher conferences, I suspected that he might have some trouble getting dressed because we were due at school at 9:00 for his conference (yesterday he was off, but no conference). I was right- he dithered & "flea-ed" & then asked me to finish putting his shirt & socks on, which I did, & then observed that it was really helpful for him to ask for help. He went downstairs yelling & moaning, so we talked again about the "anxiety on steroids" & he said that he hated anxiety & started crying. So I told him that one thing I've observed is that he has a lot of trouble on schooldays, which did not mean that he doesn't like school or trying to get out of anything (this is a recurring argument- that he feels he's being accused of using the OCD to try to get out of things). I reminded him that this school anxiety is not unreasonable for him, but that the OCD ramps it to unbearable levels. Then I gently suggested that he wasn't alone in dealing with something painful like this, that there are other people around that I've known who were born with difficulties that sometimes cause them pain- like my friends from my wheelchair basketball days who were paralysed or had lost legs in war or accidents, & how they had to get used to being different & being perceived as being different, & used to getting around in a different way, which could be really difficult. I told him that I'd observed that those who found positive ways to look at their pain, who didn't fight it but accepted it as part of them, were happier people. We talked about people we've known who are refugees from war, & how anger & wanting revenge does not make someone peaceful. We even talked about the difference between being a "fighter" in the sense of learning to fence & how that's different from fighting something. Brendan reflected that fencing requires a lot of thought, but when he's angry & fighting the OCD, he's not really thinking, just reacting. Our discussion bounced around a bit, but as we talked Brendan became calmer, more peaceful himself. I mentioned all the ways that I've already seen him using good strategies to cope with the OCD, & how he's gotten so much better at dealing with some parts of it. That it's ok to be angry & sad about how hard it is to deal with life with OCD, but it's what he does with his anger & sadness that's important. He was perfectly calm & able to sit & eat (no book :) after that. We both felt calm & peaceful. We talked about it all again during his conference, as he reflected on how well he's managing the anxiety at school, pinpointed the difficult times of day & how he & his teachers could cope with them. It was all very positive & I felt such a glow of pride for my son.

Ultimately, I think what I really need is a big sign somewhere that says "the intense times are the times when we learn the most". It's so hard to cope with those intense times, when we're all falling apart & no-one knows what to do... but I look at what Brendan & I have learned from our frightful Mondays & I can feel (almost) grateful. We are turning our minds to every important considerations. How we think is how we live, & Brendan is growing into a very thoughtful person indeed... :)

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