Behavior as Communication

Given the way that September 1st and Labor Day hit this year, the first week of school had only three days; the second week had only 4; and it wasn't till this past week that we really had a full-fledged 5-day school week.

I think Joy's starting to realize that school is for real, not just a temporary state of affairs. She's not entirely thrilled about the new normal, and she's showing it in less-than-ideal ways any time she has to do something she doesn't want to do. Like, for example, get dropped off for the day to begin. The other day she was fine until I parked the car at the school. Then she tried to chomp me when I unbuckled her carseat. When her special ed teacher greeted her at the door, and said "hi," Joy responded with an angry "bye-bye!" Then she made no less than four swat/bite attempts on the way down the hallway to the locker.

Joy's schedule during the day is heavily modified, with one-on-one attention at all times. She's with the class for only a few times during the day -- part of the morning welcome routine, lunch, some recess, some afternoon free-time. In general, though, the classroom and its occupants are pretty much overwhelming for her. She even eats morning snack separately, for now at least. Otherwise she bolts her food so fast that she finishes long before anyone else, and then gets upset that the other students still have food but she doesn't.

Joy's unwelcome behaviors (biting, swatting, hair pull, etc.) are mostly happening in pretty clear communicative contexts: she's being asked to do something she doesn't want to do. Like, enter the danged school building in the first place. Alas, it's not just a matter of teaching her more appropriate ways to communicate her displeasure (tell us "all-done" instead of biting, for example). Unfortunately, whether she bites or (in our dreams) politely says, "No thank you," we can't honor the communication/request. She's still got to enter that building, go to her locker, etc. So there's not really any percentage in it for her to switch communication, because she's still not going to get what she wants. Sigh.

At least she got to get out and have fun for a while yesterday at the annual church campout. As has been the case the past two years, we had an almost-didn't-go scenario. This year, the weather was the wild card. Saturday morning JoyDad and I awoke at 4am to this stuff pounding down:


Can't believe that Joy & Rose slept through it, though they both woke with the thunder half an hour later and I'm not sure either of them got any further sleep.

Though the forecast for Saturday was threatening, the rain held off well enough that Rose & I went out to join the campout gathering after lunch, where she ran around on the trails with her friends, and I got to toss a frisbee around with some of our congregation's Ultimate Frisbee players. JoyDad brought Joy out for the potluck supper part of the event, and she happily ran up and down the path to the group campsite, stopping to play with stones and acorns.

We didn't stay for the singing around the campfire this year to see if Elvis would make an appearance -- too wiped out from the previous night's poor sleep. Those who did stay got their tents rained on overnight, so I think we made the right call. We'll hope to be able to stay over at next year's event, depending on what's going on with Joy (and with us) a year from now. I wonder what she'll have to tell us by then, either directly or indirectly.

Elvis Has Left the Campfire

When last I wrote, the Joy-family was off to a weekend's worth of activities, to include a camping adventure with our congregation at a nearby state park. Last year we had a fine success with this annual tent-camping event, Joy's first overnight campout beyond our yard. We did another successful backyard campout on Labor Day weekend, but ended up deciding not to take the tent out this Saturday. JoyDad was feeling under the weather, and for a while I thought I might be taking the girls for the evening on my own.

Fortunately, though, he perked up enough to make the trek to the campground after Joy's afternoon therapy, so the whole family could take part in picnic potluck and campfire conviviality.

Joy sat well at the unfamiliar picnic table and ate, per usual, a wider variety of goodies than her sister did. For entertainment afterward, she found a plastic band from a firewood bundle that she held onto almost all evening, a fine distraction from the fall leaves on the ground that might otherwise have consumed her attention (and that she might have attempted to consume herself in greater numbers than she did!) I spent a nice chunk of time blowing bubbles for her as the dusk was falling, and then when it got too dark to see bubbles, we moved over to the campfire.

Our congregation is big on singing, with four-part a cappella hymns a regular feature of our worship. This translates to lots of lovely harmony on the folksongs around the campfire as well. JoyDad always brings along his guitar to these events; sometimes one or two other people will bring guitars as well, but this year there were three other guitars, two banjos, a ukelele, and a bunch of copies of the folk-song compilation Rise Up Singing.

So at one point between songs, JoyDad inserts a query as to whether there's anything by Elvis in that thar songbook. And our local Elvis impersonator (what, doesn't every congregation have a local Elvis impersonator?) asks JoyDad does he know the opening lick to "Suspicious Minds." And JoyDad, who knows that song forward & backward, swings into the opening bars without a pause. Someone shines a flashlight-spot on our Elvis dude, and we get the entire song, all the moves and facial expressions and rich Elvis voice -- the whole deal. Yours truly, with Joy on my lap, was able to chime in with some of the other gals on the back-up vocals... it was quite the highlight of the evening. Elvis sighting at the campfire, who knew?!



Thank-you. Thank-you-very-much.

Two Versions of a Tent-Camping Story

Each fall, our congregation reserves a couple of group campsites at a state park and we gather out in the woods for a loosely-planned weekend of fellowship and camping. This year was the first year since Joy's birth that we've actually dared to try & tent-camp overnight as a family. Herewith, the campout story.

The Diagnostic Version

We almost didn't go. The night before we were going to drive up to the park, Joy woke up crying THREE times. This never happens. She almost always sleeps through, and if she does wake, she usually stims and babbles herself back to sleep, rather than crying loudly. JoyDad reported that on one of the occasions, she was grabbing at her head. Plus, after the third waking, we gave her ibuprofen and then she finally fell asleep for the rest of the night.

We suspected ear infection. She's had quite a few, though it's been a while. It's very hard to tell, though, because she has an enormous pain tolerance and an out-of-kilter sensory system and doesn't have the language to tell us when something hurts. She had just the slightest edge of a fever. So I took her in to Urgent Care when they opened for the morning (of course this always happens on a weekend, right?)

Well, Joy's ears were clear. And her throat looked fine. And her mood was improving by the minute. So when I got her home from the check, we packed up and went.

It turned out to be a lovely time. We set up Joy's PeaPod travel bed inside the tent, where she took a nice afternoon rest and then slept the night without complaint. She didn't really do any dashing at all, nor did she try to play with the campfire. Instead, she ran around within the confines of the camp area, but deliberately kept looking back to interact with whomever was tailing her. She also managed to come on a bit of a hike with me and a couple of friends. And she ate well, and smiled a lot, and generally did great.

Oh, and no seizures, though our party-count-clock has been set back with a night-time seizure last week. (Which shouldn't count. But I think it does.)

So why did the campout go so well?

1) Maybe she's settling in to a recent epilepsy-meds dosage increase.

2) Maybe having had a whole summer to experience a backyard fence has helped reduce her urge to dash.

3) Maybe the intensive autism therapy is starting to get her into an increasingly interactive mode, which we'd love to credit for some of the wanting to be with people.

4) Maybe we just hit it lucky with a good-mood weekend.

And maybe I'm wayyy over-analyzing this and should learn to live in the moment! So, here goes again:

The In-The-Moment Version

We were so happy to be able to go camping with our friends from church, after briefly thinking that we wouldn't be able to go.

It turned out to be a lovely time. We set up Joy's PeaPod travel bed inside the tent, where she took a nice afternoon rest and then slept the night without complaint. She didn't really do any dashing at all, nor did she try to play with the campfire. Instead, she ran around within the confines of the camp area, but deliberately kept looking back to interact with whomever was tailing her. She also managed to come on a bit of a hike with me and a couple of friends. And she ate well, and smiled a lot, and generally did great.

Oh, and no seizures!

And I got to play Boggle with friends (and with Rose) by lantern-light after Joy went to bed.

What a blessing and a Joy.