Cross Country

We're back from a full Easter long-weekend. Filled it full ourselves, by taking on a trip to my dad's place in Kansas, a 12-hour drive from here.

I'd like to say that Joy was a dream, pleasant and cooperative and at her most charming and communicative the entire time!

The truth, of course, is considerably more mixed than that.

As I look back at my past few Joy-posts, I've been doing a lot of accentuating the positive. Which is great, important, uplifting! but quite a bit less than the whole picture. Blended in with the increased vocalizations and the group hugs have been a short fuse, a renewed spate of toy-throwing and biting (self and others), a powerful unwillingness to let herself be properly cleaned during a messy diaper change.

Those unwillingnesses ramped up sharply for our Kansas trip. We thought we'd have a pleasant stop at McDonalds en route, but she threw food and refused to eat anything more than a couple of fries. We struggled with getting liquids into her the entire trip, resulting in the unfortunate digestive effects that occur when one doesn't drink just quite enough. Still haven't gotten any milk into her in the last five days. Soda and juice, can you believe. Yikes.

She flung the glasses off my face several times. I lost a handful of (increasingly gray) hair to her fist. At one point at Easter dinner she'd been happily eating a serving of jello salad with carrots, and then before we could blink, multiple fistsful of orange jello went flying all over the table. In front of ALL the relatives. Sigh.

And yet!

Her grandparents were so thoughtful and kind as we planned several days' worth of visit activities. Grandma came up with a musuem to visit, called the Museum of World Treasures, with an eclectic collection for Rose and her cousin to peruse and a big upstairs playroom with an indoor bouncy castle where Joy could jump to her heart's content! I even got to sneak out and see a couple of the exhibits... and had an Elvis Sighting! a silk scarf signed by Elvis himself. How could you top that?

Another day we went to the zoo. Joy immediately wanted to climb over a fence and play in the water with the flamingos, and couldn't get over her disappointment that it wasn't allowed... until Grandma rented a sturdy stroller that gave her a chance to be wheeled around and calm down. We had a resounding success with feeding the goats! Notice how the initial hand-over-hand support faded out to nothing:







Joy rewarded Grandma with unsolicited kisses on their front porch swing. And Grandpa made a most excellent discovery that Joy liked to play in the back seat of their parked Prius! Safe, enclosed, a fine distraction.

It had been years since we made this particular visit -- since 2006, to be exact. We packed in a lot of family into the few days, including my brother (Uncle Schnirelmann) and sister-in-law, several of my uncles and aunts and cousins, step-sister & brother-in-law and their three daughters (the youngest of whom is not much older than Rose). I felt a little bad that I didn't even try to contact any of my childhood friends, but then again, I didn't even end up getting to talk much with all the relatives.

Autism Awareness Day (April 2) came and went during our travels. I didn't have anything profound or coherent to say. But I'd like to share a set of posts from Both Hands and a Flashlight for their insights on autism awareness for different audiences:

• Be Aware -- For Families and Friends
  
• Be Aware -- For Parents
  
• Be Aware -- For Everyone

And I think that, for this post, we are about at

THE END

Artifact from Another Era, Take 2

I mentioned a few posts ago that we had visited my mother's mother, my magnificent 100 year old grandmother, at Thanksgiving. It was an end-of-an-era kind of occasion, in that we helped with the packing to move from the retirement apartment, where she'd lived with my late grandfather for more than half my life, into a smaller assisted-living apartment.

Of course, when you make a move like that, there's lots of downsizing to be done. We helped with that too, sorting things to give away, things to discard, things to keep. In addition to the books and family photos that I knew were going to be coming home with us, we also provided a home for various keepsakes, usable kitchenware (we've already made jello from her cupboard in her casserole dish!) and other odds and ends.

Grandma has always been good at saving pretty paper things to use in making Valentines and decorations. We brought home several packets of long-saved paper doilies for art-projects at our place.

It wasn't until we got home that I got a peek at the back of one of those doily-packets. These weren't just ANY old paper doilies, let me tell you. No, these were Roylies. And they have astonishing super powers...


Here's the text, if you don't want to burn out your eyes looking too closely at the image on the screen:

Nothing wins a man more than feminine fastidiousness! Famous movie actors, writers, artists, bankers and bon vivants have oft said when interviewed that good grooming in a woman is far more important than good looks. And the pampered male is quite as particular about fastidiousness in his lady's habits as in her habit!

Next time your best beau (or your husband's boss, for that matter) comes to dinner, let lovely Roylies enhance your feminine graces. Slip a dainty Roylie under the cocktail glass or tomato bisque. Frame that layer cake you baked specially for the occasion in a large round Roylie. It will look twice as beautiful!

The most inaccessible bachelor in town is bound to melt under the appealing influence of feminine daintiness done in the Roylie manner. Roylies are such a help in so many ways, there's no reason why they shouldn't help you get your man!

Hey JoyDad? Sorry I didn't have the Roylies thing going on when we met. But you married me anyway. Next time your boss comes to dinner, though, and I've got my eye to climb the social ladder, I'll see how well these work... oh, right, she's female. Never mind.

Of Yawns and Smiles

I did a lot of yawning over our getaway weekend.

Lots of smiling, too!

Goodness knows, there was nothing boring about my first weekend getaway with JoyDad since the kids were born. (Yes, that would be seven years, for those keeping score.)

Even the drive to my college reunion was lovely, with a big long chunk of roadway between wooded bluffs on one side and the Mississippi River on the other. And time alone to talk with my sweetie! Luxury! And then a whirlwind of activity, catching up with friends and roommates of 20 years gone by, attending lectures and receptions, dining, running...

Not boring. And not over-doing it -- we had to take things a little bit easy, since there was only so much that JoyDad's rapidly-healing foot could take. So no late-night dancing or bonfire or concerts. But lots of yawning.

I think it may have been an accumulation of tired, catching up with me just a little bit. Though nobody seems to have the full answer to the functionality of a yawn, one theory is that it's an attempt to acquire an extra burst of oxygen. I needed to breathe deeply!

And then there was the smiling. How I could I help that, with as much time as I got to spend with JoyDad, and with my roommates (one in particular)? Lots of smiles passed around at the reception at the library too, where I worked as a student and where I now have colleagues with whom I occasionally cross paths at conferences.

I was surely breathing deeply and I think I was smiling as I crossed the finish line of the 5K that was an early Saturday morning feature of the reunion. I came in dead last of the 27 runners who started at the whistle together. Apparently only the hard-core runners come out to run in the bright sunlight at 7:30 on a warm reunion morning! I ran within seconds of my top pace, though, quite a triumph since I haven't been training specifically too well lately. And the rest of the pack hung around to cheer for the stragglers, so as I crossed the finish line alone, I had a whole cheering section to myself! Thoroughly smile-worthy!

And then there was the PowerPoint presentation by an alum from the class of '84, a fellow who'd been something of a wild-child during his years on campus but eventually gave up his drum set and took off for Thailand to become a Buddhist monk. He now leads a monastery in New Zealand. He simply radiated peace, groundedness, and gentle good humor. With an incredibly high-wattage smile.

So many reasons for good cheer this weekend, uninterrupted by the need for child-centered vigilance!

Then after we got home on Sunday I dragged the family off to church in the evening because the guest pastor was someone that I knew from way back when. May as well keep the reunioning going on, right?

One of the points he shared during the sermon was a recommendation, something that his wife taught him and practices faithfully herself.

When you get up and get yourself ready for the day, smile at yourself in the mirror. You are part of the work God is doing in the world. Smile at yourself. Acknowledge it.

I'm going to try to remember. The regular ruteen is back at full-blast, after the capable and much-appreciated interlude of the grandparental help last weekend. It's not easy to jump back in... more about that in the next post...

Meanwhile, the yawns are still pretty frequent, though the context is different. Will work on the smiling, too.

Rose Knows How It Goes

OK, I think I've got things in good shape. Packed for reunion, guest-room set up for grandparents, laundry done, house reasonably clean...

One other thing I had to do was write out a schedule for how much of which medicine Joy needs to take when, and which therapists are coming at what time for how long. I also had to write feeding instructions for our bunnies.

There's very little on the instruction sheet about Rose, though. And that's because she has already got this little instruction list that she's been following for a while, written in her own hand, attached to the fridge door.

Morning ruteen

Wake Up
make breakfast
eat
Make bed
get dresed
put P.J.s away
play piano
pack bag
put on shoes
turn out Light
Shut door

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Nigt ruteen

eat dinner
Play
Weed garden
Play
bath
Jamies on
read
go to bed
Sleep

So self-sufficient. She'll have those grandparents whipped into shape in no time.

Like the Coo of a Dove

And the Grinch grabbed the tree, and he started to shove,
when he heard a small sound like the coo of a dove.
He turned around fast, and he saw a small Who!
Little Cindy-Lou Who, who was not more than two.

Joy has been making the sweetest little sounds lately. Lots of little dove-coos, single syllables on falling intonations:

Awww!
Oooo.
Gohhhh.
Gooooo!
Mmmmmm.

She'll say them to herself in her crib, or at meals, or to whatever toy she's carrying around -- dolls with yarn-hair or her new My Little Pony with its lovely stimmy mane. She's also been very snuggly, and the coos are simply divine when they accompany hugs and cuddles.

GrandmaJoy and GrandpaJ (he went for the conservative alias, though really he's quite a progressive guy!) have been beneficiaries of our little Who-daughter's cooing and cuddling. They've been struck by the many changes in Joy since their last visit half a year ago. That visit was fraught with seizures and fusses and Joy outrunning them down the hall at church. This time around, Joy has been cheerful and less distractible and has done a much better job of honoring boundaries. We can even leave the bathroom doors open to air out, unthinkable half a year ago!

Alas, the grandparents are leaving this morning, and we need to get back to the regular routine. Back to daycare, and school, and work, and early rising. We'll probably get all Grinchly and shove the tree back in its box sometime in the next couple of days, all shorn of its decorations. We hope that little Cindy-Lou Who will not be disillusioned. If she starts singing Wa-hoo-dor-ay, we'll be sure to let you know.

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I was mulling this post during the day yesterday, and was surprised at church in the evening after I'd dropped Joy off in the nursery, when one of my friends caught me in the hall and brought up the Grinch. "You know little Cindy Lou Who?" she said. I nodded, my head full of Joy. Well, she was thinking of one of my daughters, all right. But she made the comparison to Rose! I guess the sisters have more in common than I realize sometimes.

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Update: This morning Joy's special-educator from the school district worked with Joy and heard the coo-ing. Without having read the blog, she quoted the line "like the coo of a dove" and compared Joy to Cindy-Lou Who too! I think it's becoming unanimous.

A Small Slip-Up

Exciting times here at the Joy household. My dad and stepmom are here visiting for several days, and the girls are getting lots of grandparent attention.

Last night, though, we had a little bit of attention-wandering. Grandpa Needs-an-Alias and JoyDad were out purchasing pizza, GrandmaJoy (who actually does share a first-name with her grand-daughter!) was playing in a bedroom with Rose, I was swirling around in the kitchen getting ready for the meal, and Joy was quietly watching a video in the living room.

Too quietly.

I had left a basket of fruit unattended on the dining table, and she had snagged a banana.

We have not yet taught Joy to peel bananas.

She was consuming it anyway. Peel and all. She was more than half-way through by the time I caught her. Blecchhhhh!

At least she's not a picky eater, right?

beyond.words: Joy's Grandpa Reviews a Dance Premiere

Joy's grandpa, my father, sent me an e-mail the other day about a world premiere dance performance he had attended this weekend, together with Joy's grandma. We talked about it the following day, and the conversation & e-mail are blended together in the words below.

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On Saturday evening Joy's grandma and I went to Wichita State University for the world premiere of a new dance work titled "beyond.words." "Beyond.words" was created to raise autism awareness.

It was a deeply moving experience.

Seven performers from the New York dance company "dre.dance," joined by seventeen performers from the Wichita State University dance program, performed the work. The hour-long work portrays the life of one person on the autism spectrum, from youth to manhood to middle age. The dance movements are based upon repetitive motions, stimming activity, wild running, etc. typical of autistic persons.

We recognized a lot of what we have seen in Joy. Having chased Joy up and down the hallways at church, I almost laughed to see seven or eight dancers running full tilt across the stage and then dashing back. At times I thought I was feeling what it might be like to be inside the brain of someone with autism, there was so much going on.

Some of it was strange and frightening. Much of it was beautiful. It brought us to the edge of tears.

The creators of the new work are Andrew Palermo, a dance master, and Taye Diggs, a Broadway-movie-TV star. Palermo has been artist in residence at Wichita State University for the past year.

In a talk-back session after the peformance, the dancers spoke with enthusiasm about their visit to a local autism therapy facility where they had done part of the work and been received warmly. The work intends to "raise awareness that autism is not something to be 'cured' but to be accepted."

Palermo and Diggs plan to take "beyond.words" on a national and world tour next fall. Anyone with concerns or connections to persons on the autism spectrum would be enriched by seeing this show.

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UPDATE: I've found another blog-review of beyond.words that goes into more detail on the story-line of the work.

JoyMama again -- my father also pointed me in the direction of an article in the Wichita Eagle from the day before the performance, with more interview goodies from the show's creators.

He said that there has been some criticism of the work to the effect that it glorifies autism, making the strange and sometimes-disturbing movements of autism into beautiful dance and turning it into more gift than burden. To which I say... what a lovely corrective. We could use to see more of that facet of the complex truth that is autism. It helps to counterbalance the bruise-and-bite side of things!

I wish I could have been there, and I sure appreciate the review and the chance to share it. Thank you to my father for being so attuned to life with Joy, and for contributing to the blog as well as faithfully following it!

P.S. Several things I've read recently, of which the review reminds me:
Dancing in the Window by rhemashope at Autism in a Word
The Supercharged Brain by Kristina at Autism Vox
Where He Lives by Emily at A life less ordinary?