Wednesday, September 06, 2006

Last day before school begins...

Yesterday was a rest day, of sorts. We had no schedule telling us when to do what & that seemed to be just fine for both B & me. I had some house-holdy things to do, like make bread & wash rugs, but there was time to sit & read, too. B spent in the neighbourhood of 2 1/2 hours legoing yesterday afternoon, a last burst before the end of summer perhaps. He even, gasp, went down in the basement to forage for legos that had been carefully boxed & put away because there's just no room for them upstairs. B has had a morbid fear of spiders since the OCD kicked-in 2+ years ago, & our basement is spider-central, so you can imagine the motivation that had him rummaging around down there. I was pretty amazed... He has not given up on the lego racer game that disappointed him so badly a few days ago, but is playing it at the lower level, adding cars to his team & doing the games over & over. He remembered that he had some of the lego racers, put away for a couple years, & was able to find them in the basement. He looked online & discovered that this is yet another series of legos no longer available (at least in the US), like his beloved Spybots, but since I found another spybot on ebay he has hopes... This is one thing I've noticed about B & the games on the lego site: that once he plays one of the games, he likes to have the legos associated with the game. That's not too difficult, since B is a major legomaniac & we have a behavioural charting system that allows him to earn these coveted legos, & I don't suppose it's any surprise that the games on the site make him want legos... that's what it's for, ultimately. What is kind of cool is that he'll spend as much or more time playing with the legos as he does playing the games online. When he was doing "Worldbuilder 2" (the first one wasn't mac compatible) he made all these cute ducks & fish out of regular bricks & had fleets of them around his room :) So, I'm not surprised that he's trying to collect all of the racers, although I'm not rushing over to ebay to look for the ones he's missing. He goes in & out of these phases pretty quickly & I have a feeling that school starting tomorrow may derail some of the energy he's been putting into this particular game. While he was in the basement B also retrieved his big Knights' Kingdom set (Hannukah prezzie) that had been put away in pieces, & is now in the process of re-synthesising it into his "Knight Rangers" storyline, complete with scorpion drones for the bad guy, & the knight minifigs being the rangers. He's reconfiguring bionicles to be their 'zords... they look really neat :)

Today we went over to school to drop off all of B's stuff, see his new room, & say hi to everyone. We have done this every year that B has been at Cobblestone (this is his 5th) & it really helps him start off on the right foot. This year they have desks (ultra cool :), so he put some of his stuff away in his desk, then picked out a locker. I found his wipes box (I had written "usagi" on it in hiragana & drew a picture of a rabbit, which is what it means, to distract from the fact that it is a wipes box... B was only teased by one person last year for having wipes at school & was able to manage the teasing just fine on his own) & put together some spare clothes- particularly boxers- to have on hand. We climbed all the way to the 3rd floor (this will either kill me or I'll be in the best cardiac shape since I was in my 20's & pushing 10k races in my wheelchair) & found his room. His teacher was extra glad to see him because they have macs in his room this year & she needed help figuring out how to use them. B was equally as happy to provide assistance :) After seeing everybody on the 3rd floor we walked through the rest of the school, saying hi to friends & teachers old & new. The place was still a work in progress, but a lot of classrooms had been reassigned ove the summer & furniture moved, & new coats of paint spiffing things up, so the place is looking good. After about 1 1/2 hours at school we went to our favourite Japanese restaurant for an end-of-summer treat. B was quick to point out that we can go back on the next school holiday :)

C only works a half-day on Wednesdays, so he got home just after we did. He & B made plans for their afternoon while I got ready for an appointment I've been waiting for for 4 months... Although I have had chronic, low-level arthritis for 30 years (since I was 18), I've been having more trouble for the past couple of years. Last February I had a major back flare-up that sent me to a (wonderful) chiropracter, who I'm still seeing for maintenance. Then in May my right hand swelled up so badly that I couldn't use 3 fingers. I was having a lot of trouble functioning that way (I couldn't type, for one thing!) so I went in to see my internist, who sent me for bloodwork & xrays & then to a rheumatologist. In our town, is is nearly impossible to get in to see a rheumatologist (C has patients who travel 100 miles to see one), but I was willing to wait (4 months) & today the wait was over. Before I went, C & I talked about what I was hoping to get from this appointment, which helped a lot. My main concerns are that I've had to cut back drastically on my handspinning (& I teach handspinning...), my weaving, & my knitting (which I also teach), plus I'm at a higher level of constant pain than I've been for many years. This affects my available energy & therefore my ability to cope with life & my kid. I was feeling some butterflies, too, as I always do before meeting a new doctor. In my life I have had doctors tell me that things are "all in my head" & that I shouldn't complain because things could be worse (such helpful medical opnions... grrr) so I am always a bit nervous about what I'm about to encounter. I will say that age & having a physician husband has helped me receive more respect, so I don't feel intimidated like I used to. In any case, off I went...

As C had warned me, I saw a fellow first, who did the initial interview & exam. He was a nice kid (wow, do they ever look young these days) & seemed to be respectful & thorough. Finally the main event- the rheumatologist arrived. I was a bit put off at first because he didn't really look at me, just quizzed the fellow about me. But things began to get interesting when he asked the fellow for opinions, & then challenged him (I felt a little sorry for the kid). He referred to me as a "young woman" at one point which was very kind :) & I told him so, but, of course, it was in the context of having arthritis (the doctor isn't more that 5 years older than I am). He definitely made eye-contact with me & spoke directly to me as he did his exam, which was heartening. When it was over, he seemed interested & perhaps even intrigued. He wanted to know more about my life, sleep habits, etc... & I had to explain that I don't pay attention in as much detail to such things (how long does it take my morning stiffness to pass? I dunno- once I've got B up & running I'm not thinking about me much...). He was quite interested in B & his autism, how having the arthritis adversely affect my energy level was not helping me to do what I need to for B, & just how family life with him is. It was nice to be able to say that I don't feel like we are a family in a state of emergency, but that we have a happy home & good support. He'd heard of B's school & said nice things about it. It's funny how sharing these sorts of things help make the doctor-patient interaction feel more personal & respectful. I was aware that he's a busy man (I'd waited 4 months to see him!), but that didn't prevent him from being respectful & treating me as a human being. The best part is that he's really interested in figuring out, after 30 years, what's behind my arthritis & how he can best help me to keep it from cramping my style. I left the office after 1 1/2 half hours a bit breathless, feeling that I'd been heard & was on the right path. I do have homework... I have to get more blood tests (working that into the next couple of days will be interesting), I have to call & have some x-ray reports sent to him, & I have to have some bone scans in the near future- they are working out the details with my schedule in mind. Going through the experience of tracking down the cause of my arthritis & looking at possible treatments has opened a long-closed can-of-worms in my heart & mind. This condition once put me in a wheelchair & on crutches & canes. During that time I was visibly, identifiably a disabled person, & I got involved in disabled-rights causes, like the passing of the "504" legislation (this was back in the late 70's), as a matter of personal survival. In the years since I recovered from that flare-up & literally learned to walk again, I have had mild arthritis but have not been identified as a "disabled person". I had to put so much of what I learned back then into a room in my mind & try to forget about it. I could not mesh the 2 existences... When I discovered that B was developmentally delayed, the door opened a crack. Many of the things I learned back then have helped in my advocacy for my son. Since last summer I have been intermittently disabled by swollen knees, painful back, & swollen hands, & I am finding the door opening even more & the memories coming back to me. I have been reading blogs by members of the Autism Hub that remind me very much of my experiences when I was "disabled". It's a very odd experience, painful & yet enlightening, to be putting these pieces of my life back together. I guess it's really about time I did so, & it also reminds me very much that my "Temporarily Able-Bodied" (TABs are what we called the non-disabled back in the 70's :) status is ticking away, like a timer about to go off...

While I was gone, C & B went to get B a haircut (& an ice cream at the parlour that occupies part of the salon these days- C brought home a pint of ice cream, too, bless him!), then B had a bath, since C would be at a church meeting this evening during the regular tubby time. C told me they were talking about tomorrow evening & how C won't be home for dinner for some computer training at work, & B remarked, "I guess they still haven't given up on you, dad." I really snickered when C repeated this conversation- C is notoriously computer-phobic. he just doesn't have the computer sense that B & I have, & is always getting himself into trouble electronically. It's amazing how our kids get to know us... I got home from my appointment in time to rebraid B's rat tail. He was getting increasingly ticcy & was having trouble getting his shirt back on, with major tic interruptions. C finally went upstairs & coached B into getting his shirt on, then left him to some major legoing... Dinner time came & C went up to let B know, but came down without him. he told me B was "sparking" & really focused on the image in his mind of the lego he was creating, so he decided to give B more time. We ate our dinner, & finally we heard B call down that he was ready to eat. B was much calmer when he came down & ready to be with us. When we discussed it later, we decided that letting B keep going with the lego was the right thing to do, rather than trying to force a transition & end up holding a melting-down kid for the same amount of time as he peacefully legoed. C went off to his meeting & B & I had an uneventful evening. B has been very into nature shows lately, & I reminded him that we have 5 Kratt's Creatures tapes that I made when he was little, so he eagerly agreed to watch some before bedtime. Then, after some fleeting, unpleasant thoughts as he got settled for bed, B was ready to listen to me read. I finished the book before he was asleep, but he was ok with my leaving & fell asleep quickly.

Today B told everyone at school that he was looking forward to coming back to school (I told them it was because I've been boring him at home :). He's psyched about having his own desk, the prospect of new science projects (he enquired specifically about that), & having macs in the classroom. I think we're as ready as we can be!

2 Comments:

At 1:44 AM, Anonymous Aspie Dad said...

Sounds like it will be a great year!

 
At 2:27 AM, Blogger Kristina Chew said...

Here's to a happy, healthy, adventure-filled year for everyone!

Experiences with Charlie have certainly made me leery of doctors.

 

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