Monday, August 22, 2011


I had the occasion to go through some old e-mail earlier this summer, from around the time of Joy's autism diagnosis at the end of 2006. The diagnosis was not what we'd been expecting, though we'd visited a developmentalist who is a recognized autism expert. The post-diagnosis e-mail conversations with daycare & birth-to-three providers reminded me of one of the painful eye-openers from the evaluation appointment. Since (as my regular readers know) I like to look on the bright side, I was wanting to make sure the doctor saw what Joy could do if we gave her just a little help. But for evaluation purposes, the doctor needed to see everything that Joy could not do when all our little helpfulnesses were taken away. So we had to back off, and take a good hard look at what happened when Joy was on her own in unfamiliar territory with an unfamiliar doc being asked to do unfamiliar things with no intercession from us. It wasn't an easy thing to witness.

We'd been accommodating like crazy, without quite realizing the extent of it.

And guess what? We still accommodate like crazy, probably on auto-pilot too often still, though I like to think that we have a better framework for evaluating what's getting in the way. Accommodation is a balance, with immense positives for doing it right, and negatives (as with just about anything) for going overboard.

Of course, with any kid, you can't always be doing everything for them or they'll never learn to do things by themselves. Joy's no exception. But with Joy, and with autism in the picture, we have to figure out what we do need to do for her, and how to arrange her surroundings and our schedules, just to make things even possible.

Our backyard setup is one example that's been on my mind lately. Back at the beginning of this blog, we enclosed our large backyard in a lovely tall wooden fence, so Joy couldn't dash away into danger outside our yard. Immediately our stress level during outside play went down! We no longer had to hover on high alert lest Joy should suddenly dash and we'd need to spring into full dash ourselves to keep up & catch up.

This summer, unfortunately, there's been some stressful dashing within the yard, with Joy determined to acquire and CONSUME things she really shouldn't. One example has been our huge old 30-foot apple tree, which loads up with apples every other year. This was the year! and, not only does it load up, it drops them on the ground. And Joy has an insatiable desire to eat these luscious windfalls, no matter how full of rot and worms and ants they may get after sitting on the ground for a while. So I've spent hours collecting rotten windfalls and carting them to the compost pile at the back of the yard, often trying to get out in the early morning to take care of the overnight mess before Joy gets out of bed -- because once I'm on my own with her and we're in the yard, I can't move fast enough to clean up one apple before she gets the next one. Fortunately, apple season does eventually come to an end. We keep thinking the tree has dropped its LAST apple. Maybe the one-more it dropped yesterday will be it?

Then there's been a little stand of ferns and other shade-plants that grows up under the cherry trees in the middle of the back yard, that we affectionately call "the jungle." The little fronds on the ferns have been irresistable to Joy as well. She hovers by the plants (a mosquito-haven with all that greenery and shade), fondles and picks the fronds, carries them around -- and then, quicker than lightning, into the mouth they go. Bleah! We found ourselves having to cut yard-play short because Joy would get so fixated on picking and eating the ferns. Eventually Rose and I went the full-accommodation route. We cut down the jungle on Friday evening. Though it no longer provides a haven for the wild bunnies that Joy loves to chase around the yard, at least the fern issue is gone. Joy lost interest immediately, hurrah!

Should we have tried to teach her just to stay away from the apples and the ferns? Maybe. But what was happening instead was that the yard was becoming a non-livable place -- which, now that we've started having some gloriously comfortable weather, would be a crying shame.

It would also be too bad not to get full use out of this:

Three cheers to JoyDad for making this delightful belated-birthday present happen! Neither he nor I have a particular bent toward construction projects, so it's a step out of the comfort zone to do something like this. But we've got neighborhood friends who did this project in their own yard a few years ago, and the dad volunteered both his experience and his powertools to set up a temporary woodshop in our garage. JoyDad acquired the swingset kit and the lumber, and with two other helpers (one from his band, one from church) they got the swingset knocked together all of a Saturday morning. Then we re-assembled that evening for a barbecue & kiddie pool and swingset play.

Joy wasn't in a mood to come out and swing and reward the laborers for their work the minute it was done. But we've had hours of swinging since then -- and it has become much easier without the temptations to go dashing off for a snack of apple or fern between swingings.

This hasn't been an easy summer, on the whole. It's the first year we've had the situation that both kids have been in school, so both kids need new summer care -- previous years, Joy had year-round daycare and we sent Rose to summer day-camp-care. But day-camp-care that works for Rose won't work for Joy... so we went the sitter route. Two days of sitter, two and a half days of JoyMama, half a day of JoyDad per week. Quite a lot more direct Joy-care than we had during the school year! On top of that, we've been doing a home-based therapy schedule where we've had two-hour sessions 4 nights a week, plus one on Saturday morning. But then our provider changed policies, such that they'd no longer offer in-home services to families like ours... existing home-based line therapists were grandfathered in, but they wouldn't train anyone else to work at home. So the one line therapists who did 3 nights with us moved out of town mid-summer, and the clinic doesn't do evening hours in the summer, so that's three more evenings we're on-duty now. Then our remaining therapist gave notice, and we'll have to start with someone new in clinic when the school year starts.

I'm apprehensive about the upcoming school year. Long-time readers may remember the traumatic transition into kindergarten last year. The one saving-grace anchor was the familiar evening therapy routine that Joy could come home to... an anchor that has now been cut loose. We know that she'll have a different case manager at school, new teacher of course, and we don't yet know if she'll have ANY familiar staff, though we're hoping. We're getting a lot less prep-meeting time than we got last year too.

And we've had some rough behaviors ramping up as the summer wanes, probably due in some part to the fact that it's SO MUCH me & JoyDad on duty lately. We're feeling stretched thin, holding things together with duct-tape-and-string. (I can hardly imagine what it would be to have only one parent to do it all, for whatever reason.)

So we continue to accommodate what we can, hoping we can find a better balance once we get through whatever transition issues will be upon us with the start of September. I might even be able to blog more often, but the ongoing activity on the blog will have to be part of what I consider as the balance becomes (hopefully) less duct-tape-and-string and more deliberate.

Think good thoughts for us and Joy!

Thursday, August 4, 2011

Hey, Nonny Nonny

JoyDad & I had the immense good fortune last Friday to attend the premiere of a brand new play last weekend, The Lamentable Tragedie of Scott Walker, Govnour of Wisconsin. The playwright and director is a friend from church -- and also our favorite Elvis impersonator -- and we'd been hearing for weeks about the play from various angles within the congregation: the writing, several of the actors, the props, the costuming (including Republican codpieces aplenty!)

Though we weren't able to assist with any of the requested props, nor lend our acting talents, we did get a back-channel participation request right from the start. Would we be willing, the playwright asked, to lend him our story for use in the play? We were glad to say him "aye," trusting that he'd do right by us, reflecting what the Wisconsin budget means for us and others like us, and why we've raised our voices as we have. We didn't get much in the way of updates after that, a brief hint or two about who we'd turned into, and then the last update made it sound as if the final product had morphed quite far afield of any JoyFamily roots.

In the final weeks of preparation, JoyDad ended up contributing a recorded guitar solo for an original song, so we knew he'd have at least that presence in the production!

Lots of anticipation as we left Rose & Joy with yet another pair of friends from our congregation, to go see how the Lamentable Tragedie would represent what has happened in our state since February.

It well exceeded my high expectations.

The play takes the form of "Fakespeare," telling the Wisconsin 2011 story in lively Bardic borrowings and transformations. This English-major would see it again just for the thrill of trying to keep track of how many snippets from the canon I could identify! The tragically over-reaching, self-absorbed yet un-self-aware Walker character wreaks his administration upon the state of Wisconsin, eminently recognizable as our governor, with moments as Hamlet, Macbeth, and even Juliet! (Believe me, it works. Just go with it.)

A small but multi-talented cast of characters, gloriously costumed in multiple roles, ably represented state senators on both sides of the aisle, protesters and other Capitol denizens.

And then there was a touch of Dickens among the Shakespeare, a little Cratchit-ish family where the hard-working father is a non-partisan public employee (who plays a mean electric lyre), and the Tiny Tim-ish character relies on Medical Assistance, and the mother finds herself giving testimony that is openly ignored by the powers that be. And yes, my moment on the barrel with a bullhorn gets a nod as well. We were definitely recognizable to ourselves, and to friends as well.

Even without the interweaving of personal elements, I'd have been bowled over by this play, and how well it evokes what happened (and is still happening) here. The dialogue is wickedly funny and clever, and manages not just to bring a powerful critique of the Walker administration, but swipe at protester and senatorial foibles on the left as well, making the heroes all the more heroic as they eventually band together.

The glimpses of JoyFamily on that small, spare stage made me feel simultaneously both proud and very much aware of being a small, small part in the larger play that is working out on the stage of Madison, and Wisconsin, even now. That larger play is still being written, and will take a dramatic turn in one way or another on Tuesday with the recall elections as six Republican senators, who have been marching in lock-step with Walker, must answer to the voting public.

On Saturday morning, JoyDad and I were still thinking on the Lamentable Tragedie, and singing hey, nonny nonny. And we had an Elvis-sighting at the breakfast table. Joy clearly echoed "nonny, nonny." Just once, but it was definitely there.

Thank you, Doug, and players and participants all!