Thursday, April 20, 2006

Relaxing week (so far)...

I can't believe it's Thursday already. As noted in my previous entry, this break week has been full of plans, but it's managed to be a wonderfully relaxing week, too. I realised this on Tuesday when B & I were sitting in his psychiatrist's office for our monthly check- & weigh-in. Usually we go right after school & even though B has had a snack on the way, he's always in a low-energy-yet-wired state when we see her. On Tuesday, he was charming, funny, & mostly appropriate in his behaviour (within the standards I expect of a 10-year-old :). I found myself thinking, "how nice Dr. B can see him this way for a change." Usually I'm thinking, "oh, I'm glad he's doing that here, now she'll see what I'm talking about"... What a nice change! One of the bonuses of our visit was that, at the weigh-in, B appears to have lost 12 lbs!!! We're not sure if it's getting back into biking with dad or what, but we are very relieved... & have put-off discussion of changing B's meds for the moment.

Another sign that B's feeling relaxed this week is that he coped with not one, but two birthday parties Tuesday afternoon & evening (this after the doctor's appointment) without melting down. The first party was especially stressful, since it was a sports-oriented one with all of the neighbourhood boys, held next-door (our next-door neighbour's son is 4 days younger than B, but they held-off on his party until the break). We know that B was teased some by the other kids for his clumsiness because he told us afterward... we had prepared him for this possibility & let him know he could come home any time- but he didn't. He just ran around all afternoon & seemed to have the best time possible under the circumstances. The evening party was lower-key, for his best buddy E, with cake & prezzies & playing with E. B was amazingly self-possessed, considering the energy he'd expended all afternoon. He told a joke that had us all in hysterics (E in particular, it being typical 10-year-old humour...). When it was time to leave B held it together. It was like having a whole new kid...

Yesterday C & I visited B's psychologist as we do every month or 6 weeks, to put out heads together & discuss strategies for coping with B & helping him cope... B's consultant teacher Cherie sat for him & I was also glad for her to see him so relaxed. In the car on the way, I mentioned B's relaxed state this week to C & wondered at the contrast- he's been so much fun to be with & yet, just last week I was struggling to cope with him. We brought this to Dr. M, & our consensus was that the social stresses of school are what is most likely to have him so burnt-out by the end of the day. The forced socialisation of school, constant exposure to OCD triggers, & bombardment with unexpected situations demand a great deal from B. Although these are the hallmarks of "real life" & are what we hope B will someday be able to take in stride, it occurred to me to question our baseline assumptions, too. Reading the blogs of autistic adults has been illuminating- & I have particularly appreciated Zilari's contributions in the comments section of my blog. Being aware of what Zilari has said about how she best functions in the work place & in other social situations, I wondered out loud if we were not being unfair to B to expect him to learn to cope as well as a NT person might... this was the first time I'd ever said anything like this to any of B's doctors & it felt weird... but if I can't advocate for my kid, who can? Dr. M did not react negatively to what I was saying- he mentioned that we can have aspirations for B, but definitely keep in mind that his coping in social situations may always be different. I certainly do not want to expect less than the best from my kid... but I also do not want to be the source of unreasonable expectations either. To expect B to behave or "be" NT is disrespectful, in my opinion. To discover what he can do is appropriate... but seeing my kid free of the stress of school has been an eye-opener. I don't recall there being such a difference during the winter break, but there have been many changes, too- in meds dosages, in growth & development. Our discussion with Dr. M then turned to looking at ways to decrease the stress at school, particularly for developing strategies for B's transition to 5th grade. One of the things we talked about was helping B to learn to judge his emotional state better, so that he could catch himself while still in a moderately stressed state & give himself a time-out before things became uncontrollable. This is pretty sophisticated stuff- but Dr. M believes that B is nearly ready, developmentally, to do so & will revisit strategies for learning this with him in their sessions. As an adjunct issue, we talked about how "lost in space (& time)" B tends to be, which prevents him from feeling in control of his life. This is something I've noticed a lot as B's been getting bigger. Although he can tell time on a digital clock (he has no concept of analog time...), he doesn't ever look at a clock or watch to discover the time, he always asks someone. He also has very little sense of the sequence of time during the day, other that knowing that there will be mealtimes. He just kind of floats through life... sometimes this can be very nice, because he's not a clock-watcher like some kids we know, insisting on certain things happening at certain times. But I've begun feeling a bit guilty about how easily we can take advantage of this- I can say I'll be ready to do something in 10 minutes, & even if 30 minutes pass (inadvertantly) he never notices... We discussed strategies for helping B learn linear time- perhaps putting our summer schedule on a time-line, rather than the way I usually do it, with blocks of time on a weekly calendar. (I should mention here that during the summer break we do a weekly schedule, usually on Sunday, including the activities planned for that week. We have lists of projects brainstormed ahead of time, & make sure we put in a balance of "up" & "down" -time activities. We've been doing this, at Dr. M's suggestion, for about 3 summers & it works beautifully. Plus- we get an amazing amout of stuff done, from writing projects to science experiments, all summer long!) We talked about ways to carry-over these ideas at school, too. For the first time in along time I left one of our meetings with Dr. M energised, rather than just patched-up.

This morning B sailed-through his second-ever fasting blood test (he needs these every 6 months because the seroquel can predispose him to diabetes). We got to the lab early & were 5th in line, & the worst part was when the heavily-perfumed woman came into the waiting room before it was his turn to have his blood taken- the smell was overpowering to him & he breathed noisily through Rufus's belly, while contorting himself as far away from the lady as possible. I felt bad for him... but it did make going into the room to have the blood draw even more of a relief :) B was fully self-possessed & charming through it all. I gave him a bag breakfast on the way to grocery shopping, so we were home from all of our errands by 9:30. This afternoon Tomoko is coming over to watch "Howl's Moving Castle" with us in japanese, then then we'll cook yummy japanese food for dinner together (I am hoping to master tamagoyaki with Tomoko's help- mine always falls apart). B is hoping to use the onigiri mould by himself...

I'm glad I found the time to record these break-week observations- I will use them as reference when things heat-up again, & also as a hopeful reminder that living with B is not always difficult. It has been such a joy to be with him this week- it's made me look forward to the summer vacation as much as he does!!


At 11:15 PM, Blogger Zilari said...

You are probably right on in your assessment that the social demands of school are resulting in a certain degree of overload for B.

I most certainly associate here -- this past winter I had a 3-week vacation and though the transition was a bit odd at first, I soon ended up in better spirits than I'd experienced in quite a while. My current (ongoing) goal is to balance the need for down-time and decompression with the need to go to work.

And I do not hate my job -- it can be extremely interesting and I've had some good experiences there. While at work, though, I tend to keep to myself as much as possible, in effect "saving my energy" for encounters that are absolutely necessary.

I also keep to a consistent schedule and make sure I go home no later than 6 PM most nights. There are a lot of people who work much longer hours than I do and this probably makes them look more dedicated in the eyes of management, but I know that if I tried to work those sorts of "impressive" hours, I would quickly become unemployable and probably unemployed.


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