Saturday, September 25, 2010

Different is Good

I learned this morning that Joy has a suitor.

Her young playdate friend has announced his matrimonial intentions.

This short, dark & handsome lad seems attracted to their differences...

Namely, he's apparently got a thing for blonde!

Now, I know that Rose is no longer seeing the youngster she "married" in pre-school. I didn't wind up with the fellow who sought my hand when I was in first grade.

But hey, different is good. You never know, right?

P.S. This guy's parents are celebrating this weekend their ongoing successful overcoming of the blond/brunette divide. Happy anniversary, you two!

Thursday, September 23, 2010

Bullet Proof

We're definitely in new territory here, with Joy's ongoing rocky kindergarten transition.

Joy is still bringing the unhappy to school (not all-day every-day by any means, but plenty), and the incidents in which she's doing so with her teeth are starting to pile up.

I'm impressed at how her staff are able to greet her (and me) with a smile, after some of the bite encounters they've been having...

Fortunately the problem-solving is in full swing, with a district consultant who comes highly recommended. Most of the initial thoughts so far are behavioral, which is surely along the right track. But one of the expert insights on the physical side that hadn't even occurred to me was this:
Kevlar sleeve with thumb hole
Kevlar sleeves for Joy's staff!

I'd no idea this product existed, but I guess it makes sense. The market is primarily for industrial safety. Or, as a reviewer on Amazon said, it's great for getting into the rose bushes and berry canes. Might have to get a pair for myself to do double-duty with gardening and safety -- I got a bite on my hand this morning that would have been mitigated with the sleeves. And maybe folks would just assume that I'm treating a bad case of carpal tunnel or something.

Unfortunately, this doesn't address another prime biting target, as my own experience can attest. Next item we need in Kevlar is something like this:

Sports Bra
Sigh.

Sunday, September 19, 2010

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.

Monday, September 13, 2010

Yawns Are Funny

Audio performance art, starring Joy & JoyDad!

(Listen especially for the part where she prompts him to do more.)

Yawns Are Funny (.mp3, 31 sec.)

Saturday, September 11, 2010

9-11-2010

Part 1:

This is now the second time in this household that we have greeted September 11 with celebration.

Joy's last observed seizure occurred on September 11, 2008. Two years ago to this day. Hosanna in excelsis! (a cry of praise, and of ongoing need for God's blessing)

Part 2:

Two texts for your consideration, given the other anniversary-meaning of September 11.

From the New International Version of the Holy Bible,
Micah Chapter 6 Verse 8:
He has showed you, O man, what is good.
And what does the LORD require of you?
To act justly and to love mercy
and to walk humbly with your God.

From the Shakir translation of the Holy Qur'an,
Chapter 7 Verse 199:
Take to forgiveness and enjoin good and turn aside from the ignorant.

Peace.

Friday, September 10, 2010

Expect the Unexpected

I'd read a lot of blogging about the phenomenon. About how kids on the spectrum (and some kids not!) put so much effort into keeping their heads above water at school, keeping it all together during the day. Then they get home where they're comfortable and can let their hair down -- and all hell breaks loose.

I read about it again just this week, as my dear bloggy friend Jess described an absolute mess of an inconsolable evening. Her daughter's aide at school later said, "When I saw how hard she was working to manage herself and to redirect her energy when the stress was too much, I knew full well that we were purchasing our morning with your evening."

We'd gotten the warning from our Agency 2 autism-therapy team leader as well, who cautioned us to be very careful about how much therapy we might be planning to load into the evenings of a kiddo who was going to be working very hard all day at school. We ended up deciding to use the start of the school year as a transition point from intensive-level therapy (24 hours per week in Joy's case) to a "post-intensive" level of 8 hours per week.

So how have things been going at home, this first week of full school days, now that Joy's recovered from that fever she had?

First off, I get the most amazing hugs when I pick her up from school in the afternoon. She crawls up into my arms and hangs on me while I hear about the day from her aide. It feels like somewhat like a big sigh of relief, even though she (of course) doesn't verbalize it. Mama. You're here.

Tuesday, the first afternoon home this week, we chanced things with an impromptu playdate at our house, a family that has an older sib for Rose and a younger sib for Joy. Joy and her friend spent the time happily in the playroom, crashing on the pillows & couch, crawling through the play-tunnel. Joy was more interested in bouncing on her exercise ball and looking at herself in the full-length mirror, while her friend was more interested in filling plates with play-food to serve the mamas, but when they interacted, there were smiles and giggles.

Wednesday we had the first encounter with an evening therapy session after a full day of school. Joy was so happy to see her barista. At the end of the session, the barista commented that Joy really seemed to be taking delight in familiar games with a familiar person. There's that sense of relief again...

Thursday, we went to the park after school with the same friends as on Tuesday, plus one extra. Joy was once again in a good mood, and spent a fair amount of time on the little merry-go-round with all four of the other kids, despite much noisiness from the older ones.

Maybe it's a honeymoon, maybe it's a fluke, maybe it will all fall apart this evening or next week. But so far, this week's expectation-shattering has been every so much nicer than last week's expectation-shattering.

I oughtta have figured out by now to expect the unexpected!

P.S. The latest funniest-things-in-the-world: the act of yawning, and the word "panda."

Thursday, September 9, 2010

Photo Wednesday

OK, it's Thursday. But we took the photo on Wednesday...

Fourteen pound melon from our garden
This monster-melon weighed in at 14 pounds.

Monday, September 6, 2010

One! One Wonderful Blessing! Muah-ha-ha!

Good grief. According to my hit-count stats, someone actually came and visited Elvis Sightings via a Google search on "horrid kindergarten transition stories"!

It's probably just as well that I held off on posting during the long weekend. I wasn't very good company -- I'm glad that we're on to the second week of school here.

Day Two of school, Thursday, got off to a better start for Joy. We avoided the noisy playground and the teacher had altered the routine such that snacks were not out on the tables. I learned later that Joy had actually managed to hang with the class for the gathering time, and got to use her GoTalk for sharing time and to indicate that she'd brought a bag lunch. But then she started getting warm and lethargic -- I got a call late in the morning that she was running a low-grade fever. I requested that they feed her lunch and call me if things got worse, and didn't receive a second call, but only because she'd crashed out at naptime and they didn't really get her up until time to go home, because it was a shortened day. Her fever at that point had climbed to 101.

Day Three, Friday, I stayed home with her. The lethargy had passed, the cranky took its place. We had varying levels of cranky all weekend long, with lots of swipes and bangs and hair-pulls (particularly on Rose, poor kiddo). Not a good weekend for me either, especially compared to how energized and excited I was at the beginning of the semester last year.

Today was better. And I think it's time for a blessing count.

1) Joy made it through a full day today, no calls to work. She even made it to music class with her classmates, and hung with it much longer than I'd have expected.

ONE! ONE WONDERFUL BLESSING!
MUA-ha-ha-ha!


2) When I went to pick her up, she wrapped me in a huge hug while her aide filled me in.

TWO! TWO WONDERFUL BLESSINGS!
MUA-ha-ha-ha!


3) We invited friends we ran into on the schoolyard for an afternoon playdate. Joy was laid-back, happy, giggled when playdate-dude came popping out to say "peek" at her (rather than yowling and swatting at him)!

(OK, you can fill in the count in your own mind from here.)

4) I'm so fortunate that I got to experience an ideal kindergarten transition, three years ago with Rose. Rose was so ready for kindie when her turn came. Huge grins in her first-day photos, no tears either from her or from me. Pretty much as smooth as it gets.

5) I managed a bike-commute home this afternoon in the face of wind-advisory-level winds. I am bike-commuter, hear me roar! Plus I realized that coming home at 2:30, I'll not have to worry about the encroaching darkness that traditionally has made me put my bike away for the season when we "fall back" for Daylight Savings. I can actually wait for the snow to fly!

Zucchini Flowers6) Zucchini flowers. Which turn into zucchinis. Which turn into zucchini bread with mini-chocolate chips. Yum. (Can you spot the actual zucchini in the photo?)

SIX! SIX WONDERFUL BLESSINGS!
MUA-ha-ha-ha!

Wednesday, September 1, 2010

Bringing Kindergarten Expectations Down to Earth

With the barest little bit of hindsight, I see that I could have framed my expectations differently, going into the first day of kindergarten.

I could have thought: well, Joy has been having some pretty rough therapy sessions lately, especially in the mornings -- and these are with familiar people, in familiar territory. How about we make that the bar for first-week expectations. If it's better than those sessions, we'll be doing fine. Just get her acquainted with the new staff, probably mostly in pull-out situations because the classroom is also new and the number of classmates will likely be overwhelming. If she gets through the days without us being called in for a rescue, that'll be a victory.

If I had gone in with that mindset? Today was a victory. Joy was dry-eyed and in reasonably good spirits when I picked her up, and has been pretty happy this evening too. She was dressed in the same clothes she went in with, and had no bruises on her forehead (though she did have some teeth-bruises on her knees, some of which I saw her make.)

I did not go in with that mindset.

This was the first day of kindergarten, after all! My last baby's first day, and we'd prepared soooo much.
  • Delaying kindergarten a year.
  • Kindergarten practice this past winter and spring.
  • Visits this month from Joy's new staffers both at home and at daycare.
  • Taking Joy to the school to meet her new classroom-teacher and spend time in the classroom, and again with her early-ed teacher from last year, just to get into the halls once more.
  • Creating an extra document on top of the IEP, sort of an update to the present-level but all full of tips and tricks on what goes into Joy's day -- and then meeting with pretty much her whole team on Monday for over an hour to go over it.
  • Sending extra goodies -- nap tent, a bag full of stimmies, special bag lunch of favorite treats
I figured that we'd get there early enough to try & park fairly close to the school, greet the staffers, get Joy's backpack sitting at the right place by the school building, take some photos, swing on the tire swing, say hi to friends and their families. Then between me & and an aide, we could help Joy file into the building with her classmates, put her stuff in her locker, and accompany her through the first couple of minutes of class time. Then I'd give her a kiss and go unwind at the parents' coffee break in the library, then head off to work -- while Joy would begin life in her new classroom, heavily supported but included as the class community-building process began.

I'd set the bar way too high.

We had parking problems. The playground was noisy and overwhelming, and Joy got upset. Began to build a reputation right away for kicking other kids. The classes got lined up late, and we escaped into the building ahead of them with her special ed teacher. But we couldn't stay in the classroom, because the morning snacks were all laid out on plates with a nametag for each kid's place. The teacher and I had talked about whether this would be a problem, I over-optimistically had said to go ahead and try his usual way, and he'd kindly set out the animal crackers we'd contributed so Joy would be sure to like the first day's snack. She liked it all right -- wanted to eat immediately. Ramped up the upset when she couldn't. We had to exit the classroom and go to the special ed teacher's office/playspace to start the day.

As we were trying to get Joy calmed down, she whacked me in the nose. And I started bawling. Could not stop. Haven't been in this bad a shape since one wretched incident not long after she was diagnosed (will have to tell you all about that one sometime). Just as I'd start to get a handle on myself, I'd hear the other kids in the class singing happily together, or Joy would pull a self-injury attempt, and I'd start up again.

I probably should have left sooner than I did, but I was there long enough that Joy actually did get calmed down and was sharing some nice moments with the spec. ed teacher. I guess I still hadn't ditched the expectations, because I then ventured to say that it might be nice if Joy could at least share snack with the class. So we went out to check things out.

Alas, they were not yet ready to eat snack. And the classroom teacher -- not having seen Joy come in -- had marked her absent and had to go change the designation. And we couldn't deny Joy the snack at that point, so she inhaled her crackers, demanded more (because since nobody else was eating, there were the rest of those full plates), and got all wound up again when she couldn't have more. Back to the pull-out room she went. And I lit out of the building with a swollen face and the ugly-cry just welling up all over, and called in sick to work.

That's our victory, there. If I'd gone in with the right set of expectations and all.