Tuesday, November 28, 2006

Thanks & quacks... :)

Well, I blew the anonymity thing very nicely with my last 2 posts... I think it shows just how overwhelming life's been for the past week. Mostly, good, but really a lot going on. I appreciate very much the kind comments I've received on the sermon. Once I'd recovered from how long it turned out to be (& really, I didn't get many complaints about that :) it felt very good to get the feedback. The best, though, was from Charlie (my Charlie, *wink*). He really liked what I had to say, & since we're living this together, it made me feel that I had succeeded in capturing our life as I'd hoped to (it was bloody difficult to do, too!!!). The only "unfortunately..." part of the morning was that Brendan did not do very well with Sunday School being held with the kids all together in the lounge, rather than in his regular classroom. His tics/anxiety lately has been the highest we've seen since the onset of the OCD 2 1/2 years ago, so having things not "right" was really upsetting for him. The adults who were supervising the kids managed to help him barely keep it together, but the as soon as the service let out he ran out looking for us. The irony of standing at the door & greeting everyone after the service with my kid mashed against me, head buried in my armpit (he's 4'10"... I'm 5'3"... do the math) after this particular service was not lost on anyone. We bundled him off to the car as soon as we could. At least folks understand now what's going on with him... that's truly a comfort.

Yesterday was the day for Brendan's dental work. He had been really upset about the idea of having nitrous in order to have the filling put in until we'd speculated over dinner (the evening after his last check-up) what it would be like to watch The Elegant Universe on nitrous oxide, which piqued his curiosity & also made him laugh. Brendan has had a lot of distress about the idea of mind control, & I think that's where his fear of the gas was coming from. He's had nitrous before, when he was 6 for his first filling, but had no real memory of it. So it was good to go into this procedure with that anxiety laid to rest. Even better, he decided that missing part of a day at school was a bonus, so he was in a very good state of mind when we finally got to the dentist's office. He co-operated beautifully & it all went very quickly & easily (he said The Elegant Universe didn't seem any different, though :). We did have one very odd & unsettling experience with the "laughing" gas (& he did giggle quite a bit afterward), though... As he was relaxing, wartching the tv in the ceiling & breathing through his nose, as requested, he suddenly said to me "no tics, mom!". He was perfectly relaxed throughout the filling, no twitches, no noises... As he was recovering, with pure oxygen to flush the nitrous out of his system, he said "the tics are coming back". He could feel the tension returning, although he giggled more than ticced for the next hour or so. I had never realised how constantly Brendan feels the tension of the tics. It was unsettling & eye-opening to understand this, especially with there not being a heck of a lot to do about it...

Brendan had a good day at school (coming in at just about lunch time is his idea of a schoolday :), & then we had a brief time for a snack at home, & then on to an appointment with his psychiatrist. Dr. W has made a habit of chatting with Brendan at the beginning of his appointments, getting Brendan's perception of what's going on, which I think is really good (Brendan tolerates it...). Dr. W has a bin of army-man toys (like nothing that we have at home) & Brendan is utterly fascinated by them so he askes repeatedly to be excused to play with them, although he does try to be civil about chatting :) Yesterday he brought up his "new" tics- the one that isn't triggered by anything, & the one so overwhelming that it makes him scream & spasm his whole body (triggered by any number of things). He didn't want to describe the overwhelming one & spoke of it with Rufus covering his face. When he was finally excused to play, I reinforced what Brendan had to say, that these thoughts/tics are causing him a lot of anguish & that we (his parents) feel it's time he had a break. At this point, Dr. W kind of talked out loud, about how it's difficult to know exactly what we're trying to treat. As we know, Brendan's Tourette's & OCD are inextricably intertwined, and I added that we believe the autism plays a part in all of it as well. He & I tried to sort out our language a bit, too, since when I speak of Brendan's anxiety, I'm talking about the OCD thoughts, whereas Dr. W was hearing me speak of a more generalised anxiety, which he doesn't really see (& he's right). He said that, ultimately, there was no perfect solution to Brendan's anxiety because it's so multi-factoral, & that some of it is just how he's "wired" neurologically. I explained that we're not expecting perfection, nor do we want to change who Brendan is. What we want for him is some relief, so he can get back to enjoying life, at least as much as he was a few months ago before we reduced the zoloft (because he can't tolerate the dosage required to actually treat the OCD). I will confess, I wish I'd had my sermon there to give Dr. W. I know he sees lots of parents & probably does not have a clear idea yet of where we're coming from philosophically, so I tried to be a clear as possible that we're working from an acceptance point of view. After discussing all of this, he did say the thing I'd hoped to hear: "Well, if he were my son, I'd try..." He recommended trying Luvox, an SRI with a good record for helping OCD-related anxiety & enough research on the effects in children that we're comfortable using it. As unsettling as it can be to hear the professional that you're relying on for help air his thoughts about the complexity of your kid's situation, after thinking about it I can say that I feel good that he wanted to explain it all, that he was cautious about raising our hopes for the results. This is a process, for sure, & keeping all of us well aware of our priorities & expectations is a very good thing.

This morning, pretty much from the time he woke up, Brendan had a really tough time with overwhelming tics. He had trouble settling on a shirt to wear (they kept setting off tics) & getting dressed was punctuated by thumps & stamps from the tic (I told him the other day that he sounds like a Flamenco dancer when he tics like that, to which he replied with a humourous, InuYasha-esque "OY!" :). Breakfast went a little better, but when he went to brush his teeth his left hand set him off. When our friend Daryl arrived for our every-other-week house-cleaning, I warned him that Brendan was feeling overwhelmed today with tics. Daryl is imperturbable, thank goodness, & good friends with Brendan, who did manage a "good morning" before tearing upstairs yelling that he wanted to be put out of his misery... When I went up I found him under the covers in bed, moaning, & sat down with him wondering what to do. I decided to let Rufus handle things... I moved Rufe up where Brendan could see him & said that the "Quack Doctor" was going to help, & then had Rufe touch him with his paws on his face, ears, nose, as though he were giving him medicine. Brendan started to giggle & suggest places for the "medicine"... Now, lest you think I'm setting my kid up for complete dependance on meds for his well-being (yes, we are aware of this danger), the "Quack Doctor" is an archetypal role in the very old, European mumming tradition (called Revels here in the US). Our church Sunday School put on a mummer's play last year, right before Christmas, & Brendan played the Quack Doctor (& will again at this years' play, which we are gearing-up for in a major way, since Charlie & I are the ones organising it!) because he adores the role so much. It's a humourous, even goofy, role. The thing about the Quack Doctor is that, although he tries all his medicines on the (actually dead) person in the play, he never succeeds in curing them (that takes someone of faith- think Launcelot). Brendan understands that, so I'm not terribly worried that he's going to completely depend on the doctors or the medicines. In fact, when he was moaning in distress, before flying upstairs to the safety of his bed, all I could think to say while hugging him was that I understood that he was feeling bad, but that he're really ok, one of the ok-est people I know. It's not easy to help him to believe that, in the midst of so much emotional turmoil, but I believe it. And Rufus the Quack Doctor distracted Brendan from his distress so well that we were in the car & on the way to school before we knew it.

Onward... with high hopes that Brendan's continuing to have a pleasant day...


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