Thursday, December 31, 2009

God Sightings

Wonder stops us in our tracks. It compels us to let go of focusing on dogged accomplishing and doing, and instead to simply be open and vulnerable to the mysteriously wonderful presence that is God-With-Us.

The above quote was part of an e-mail message that stopped me in my tracks on November 22, a week before Advent. The message came across the church mailing list from our pastor, inviting us to prepare our hearts for Advent, and introducing the season's worship theme: Seized By Wonder!

The message included specific statements of invitation for each of the weeks of Advent, and said, "If one of these statements of invitation reminds you of a story or some thoughts you'd like to share with the congregation, please contact a member of the committee..."

The statement of invitation for November 29 was "Share the ways you see God here and now." November 29. One week away. Sunday after Thanksgiving, a weekend of travel. End-of-semester crunch. Surely that message wasn't for me.

But it was.

I found myself in worship-committee conversations, and writing a reflection (which pretty much wrote itself) on the bus to work and in the car on the way to Thanksgiving celebrations.

It was a strange paradox, that being open to being stopped in my tracks, and releasing the load of accomplishing & doing, entailed taking on one more accomplishing/doing task. Yet who am I to argue with the Spirit? Besides, I had been preparing for that reflection for over a year. By writing this blog.

Elvis Sightings = breakthrough moments of wonder.

I know I've got the Grinker coinage of the term Elvis Sightings up on the sidebar: a one-time utterance or action that comes surprisingly out of nowhere, and then disappears again. It's a fascinating aspect of our experience with Joy and her autism. However, the chronicles here at Elvis Sightings have by no means been confined to that narrow a definition. Instead, I've been writing about moments worth sharing. Happenings that make me think. And above all, the sightings of wonder that -- even when I don't make the explicit connection in the blog post -- make me aware of God's presence in our lives, here and now.

Some recent examples:

Seized by wonder! God is here.

Breakthrough moments of wonder = God sightings.

It was a privilege to share some of these reflections with the congregation.

My wish for you this new year -- and maybe it can count as a resolution for myself -- is that we pay attention to the moments of wonder in our lives, taking a few additional moments of contemplation and gratitude.

May your "sightings" in 2010 be frequent and marvellous!

Friday, December 25, 2009


JoyDad got Chicago-Bears gear (it was available at massive discount this year!)

Rose got a Barbie and an Only Hearts doll (the one named Lily Rose).

JoyMama got a hot bath and a nap (Christmas BLISS.)

And Joy got squishy-face.

She pulls your hand toward her face, asking wordlessly for pressure across her forehead or cheekbones. Then when the squishy-face has been given, a great big grin erupts. And she signs "more" or pulls your hand again.

Not that she didn't like the presents. This year, she tolerated quite nicely being asked to tear the wrapping paper, again and again.

She's enjoying the jack-in-the-box, and the light-up ring-stacker, both of which she's been playing with functionally on and off through the day. Even more so, though, she has enjoyed a particularly long & shiny ribbon... and a piece of bubble wrap... and the lid to a package of greeting cards. And squishy-face.

We are all joyful here today, in our own ways.

May joy be yours as well. Merry Christmas!

Tuesday, December 22, 2009

Practicing Christmas

It started out with Rose and a gingerbread house from a kit. This is the third year we've done any such thing. The first year, we bought a house in pieces-parts. Took a while to get it properly constructed, and then Rose wanted it to perfectly match the picture in the instructions. Which meant that mama did all the icing, and Rose would put on the candies.

Second year, we got smart and bought a pre-constructed house kit. Rose actually started piping some of the icing herself, on the less-challenging bits.

This year, she designed and piped the whole thing (except for the door which she asked me to do).

Well, there was quite a bit of icing left, which got me thinking. What if I made a smaller house with graham crackers so Joy could do some decorating?

Joy wasn't thrilled with the sit-down work, but did a pretty good job of poking some M&Ms at the icing blobs. Letting go of the candy was a tough part. But she didn't much seem to mind letting the candies become part of the house, as long as she got to eat a few!

Then today -- since einmal ist keinmal -- we did another one. Rose did the icing blobs...

and Joy poked on the candies again, with some guidance.

I was delighted at how Joy seemed to realize this time that she needed to let the candy go so it would stick!

Then, for a bit more Christmas practice, I set her up to help me stir the peppernut dough:

I think we've got some good Christmas practices going here.

Friday, December 18, 2009

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...

Roylie's Doilies win his heart
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.

Wednesday, December 16, 2009

Artifact from Another Era

The semester ended. And I looked around the house, rather shocked at what I saw. Oh, the piles of "stuff"! And the dust-bunnies!

And, we're hosting our fellowship-group from church for a potluck on Saturday!

So I started to dig out, and organize the piles and bags and boxes that have somehow accumulated all over the place. One bag that I dug into to organize was Joy's little bunny-backpack, which serves as a diaper bag.

At the bottom of the bag, I found an artifact from another era. It was a syringe of emergency medication, for use in case of a seizure that lasted emergency-long.

We never came close to an occasion to use it, and the seizures eventually faded, and we go entire days (weeks?) without thinking of them. It was time to move the medication -- still well within its "good till" date -- into the medicine cabinet and not carry it around everywhere.

Those days may yet return. For now, though, it feels really good to take that medicine out of the diaper bag. The less unnecessary stuff, the better.

P.S. I think I'll tackle the piles of paper on the desk tomorrow. And clean the bathrooms. Wish me luck.

Saturday, December 12, 2009

Generation Gap

JoyDad and I had the privilege of attending Rose's 2nd/3rd grade music program at her school yesterday morning. The music teacher had built the program on the theme of "Mexico," connected to a social studies unit they'd all just finished. The entire show was bi-lingual, giving the Spanish-speakers a chance to shine and the English-speakers an exciting learning challenge. They even had a seasonal touch, a song from the tradition of "Las Posadas" which re-enacts the procession of Mary and Joseph from door to door in Bethlehem until they finally find shelter and welcome. It was very well done, and of course the sight of my first-born up there singing and moving so enthusiastically brought tears to my eyes!

After the program, I got a chance to visit Rose's classroom, something I've not been able to do this fall during school hours with all my LEND overload.

She'd talked several times about a certain little fellow whom we'll call "R" who sits near her and is apparently "in love" with her. When she speaks of him, I've thought I hear a sense of being flattered, but mostly buried under words of annoyance. Was looking forward to meeting the kid, and prepared to be kinda charmed -- puppy-love and all that, so cute!

And in her classroom I did meet R, and he is indeed a cutie, bright eyes and big smile and full of energy.

Then he spoke to me.

"Hey, are you Rose's grandma?"


Rose, sweetie? Feel free to be annoyed. I won't discourage you in that stance, not one little bit!

Wednesday, December 9, 2009

Snow Day

Eighteen inches of snow, ladies and gentlemen!

The schools closed down. The university closed down. State government closed down. Buses stopped running.

It's a thing of shivery beauty.

Joy approves.

She started out at the edge of the sidewalk where the snow was thin...

But soon began to blaze a wobbly trail for herself, all through the front yard.

When she had thoroughly explored the front yard, she headed around the corner:

After visiting our neighbor-granny at her kitchen door, Joy trailed along our backyard fence (look at that heavy-work!):

Finding that she couldn't get into our backyard because the fence was snowed shut, Joy plowed through neighbor-granny's backyard to her deck. Finding the deck-steps to be a solid hill of snow, Joy attempted one step... and then turned to me and ASKED FOR HELP!! (OK, so she used the "more" sign. It was still a huge, novel help request!)

So I boosted her up the steps, we went out the driveway and down the street...

and continued onward in our winter wonderland.

P.S. Rose is out sledding right now at a neighbor's. We'd left Joy at home to take an early-afternoon rest... but the neighbor's son was asking to play with her after his nap! So we'll be back out into the snow soon.

Tuesday, December 8, 2009

Christmas Comes but Once a Year

Home then to the laden table;
Ham and goose and pints of beer,
Whisky handed 'round in tumblers,
Christmas comes but once a year!
       -- Christmas in Carrick

Einmal ist keinmal.
What happens but once might as well not have happened at all.
       -- German saying, quoted in
The Unbearable Lightness of Being

We decorated our Christmas tree last week, at Rose's insistence. Our older daughter has been the nudge for quite a bit of the Christmas preparation that we've done so far, including a gingerbread house (from a kit) that she decorated almost entirely by herself.

I wrote about Joy and our tree last time the holiday rolled around. We trimmed our little fake tree without her assistance in 2008. My reasoning for doing it that way: I was afraid that she would be confused by being first allowed to touch and decorate the tree, and then having it be off limits for the rest of the season. We were not at a point last year where she could be trusted not to stim on the branches, or grab the ornaments, or knock the thing over altogether -- though I did have hopes for Christmas 2009! So the tree went up on the stereo cabinet, substantially out of reach, trimmed with non-shatter ornaments just in case.

Well, here we are approaching Christmas 2009. And Joy is just as perseverative when it comes to ribbons and stringy-things (though not her hair right now, thank goodness!) and perhaps even more mischievous about deliberately getting into things she knows are "no."

So the tree is up high again, once more decorated with non-hazardous trimmings.

Christmas Tree 2009
This year I felt differently about Joy's participation, though. It's not fair to shut her out from this activity that Rose enjoys so much, and that is such a holiday tradition... surely there could be a way to modify the activity such that it could be at least somewhat successful for her, and not too confusing?

Rose and I unpacked the little tree in my bedroom, put on the lights (colored ones this year), and hauled out the ornaments. I enlisted her help in choosing six ornaments for her sister to do. They had to be not too heavy, with big enough loops on the holders to be not too challenging to put on -- and the ornaments couldn't be too stimmy-stringy themselves.

We found six that fit the bill, and then carried the tree out to the living room, where Joy (supported by her barista) helped put on those six ornaments. She wasn't in a great mood and didn't really "get" it, I think. But she at least cooperated. And then the tree went back into the bedroom with me & Rose, and we trimmed it all up the rest of the way, and then carried it directly to its display perch on the stereo cabinet. Joy is tall enough to reach the lower branches now, a bit of a concern. I've only caught her in one stealthy reach for the tree, though, and all it took was me saying her name in the "stern voice" to get her to back away.

One iteration of putting on a few ornaments.

When other than on holidays do we ask of Joy that she learn things in ONE annual iteration?

At Halloween, for example, her WonderWoman daycare lady Lynda does a great job of setting up a trick-or-treat practice at the daycare. But it, too, is a one-time shot, and some years it falls on a day we're not there. So Joy gets maybe one practice, then one shot going out to knock on doors and beg for candy in costume. And then it's a whole year before we require it of her again.

Talk about confusing!

Easter baskets? Once a year.

Birthday presents? Once a year.

Trimming the tree? Once a year.

Yet, how does Joy learn routines? Repetition, repetition, repetition.

She's gotten very good at getting into and out of her seat in the car, and helping to close the car door. We do that daily.

She has learned to use fork and spoon, and is making progress at drinking from an open cup. Meals come three times a day, with two snacks.

She is learning to turn noisy-toys on so that she can use them. We enabled this with a full-court press, communicating to her entire school team and autism-therapy team that toy-turning-on was a priority. It didn't take her long under those conditions to get the hang of it.

Einmal ist keinmal. If you're only going to do something once with Joy, perhaps you almost may as well not bother. One iteration is not enough to stick.

It's been different with Rose, of course. We've seen a steady progression from one year to the next of these once-annual rituals. At Thanksgiving she's gone from stirring the pumpkin pie filling, to dumping in the measured ingredients, to learning to crack eggs, to (this year) actually learning to crimp the edges of the homemade crust!

On the other hand, Rose hasn't learned it all in one shot either. It does take at least the annual repetition.

For Joy, maybe we need to think about it as a different timeline, a different number of repeats.

Of course, I don't really believe that einmal ist keinmal in a philosophical sense. Just look at what we're about to celebrate, the singular, holy miracle of God-with-us, Emanuel. Once and for all...

Then again, I think we need the annual celebration too. We need to remind ourselves anew, experience the wonder once more and yet once more, coming back to the story again and again.

I still don't have a sense of how to communicate that meaning of Christmas to my younger daughter.

But I do think that perhaps next year, I might figure out how to set up a practice-tree elsewhere in the house that is Joy's alone, with ornaments selected just for her, that she can hang again and again.

Saturday, December 5, 2009

A Pap Smear for Jennifer?

The fall semester is drawing / barrelling to a close, but I have another LEND tidbit to share -- another video from the online social work class in developmental disabilities.

This lecture was presented by Dr. Bill Schwab, a family practitioner and medical faculty member who is highly involved in physician education around disability issues. His lecture, though perhaps a decade or more old, has stood the test of time and has been one of the best segments in the course so far (and the course is almost done!) The lecture topic was issues in health care screening and preventative medicine for adults with disabilities. You can see this hour-long lecture for yourself -- it's free! -- at (You only need to watch Units 1-3; Unit 4 is a repeat of Unit 3, for some reason.)

The lecture raised issues that I haven't really had to think about yet, with Joy only five years old and all. But the years will fly by...

Dr. Schwab's lecture highlighted the story of "Jennifer," a 30 year old woman with Down Syndrome who became a patient of his. When she started coming to him, she had never had a gynecological exam or pap smear, and was very clear that she did not want any such thing to happen. She was in generally good health and had never been sexually active as far as anyone knew or she was willing/able to report. Dr. Schwab's initial approach, in consultation with Jennifer and the staff who accompanied her, involved a gradual getting-acquainted over a number of appointments, and indeed over the course of two years she became comfortable coming to the office, weighing in, having him listen to her heart and take blood pressure. She was still, however, not willing to do so much as lie down on the exam table.

After two years, she had a staffing change. The new staff who came in with her were of the opinion that here two years had gone by, the pap test still hadn't happened, it was time to get with the program and see that it got done.

Dr. Schwab opened the discussion to the audience: What possible approaches (right or wrong) might a physician take in this situation? The audience started firing off suggestions:

  • a more intensive patient-education approach
  • maybe Jennifer would be more comfortable with a female doctor
  • continue rapport-building
  • simply defer the pap test and not push
  • physical compulsion ("make" her do it)
  • change in setting
  • sedation (could be at various levels, up to general anesthesia)
  • has she been molested in the past? / seek relevant history
  • create a reward system
  • modify the screening regimen

They could have gone on.

Dr. Schwab then made a series of very interesting points, some of which you'll just have to see the lecture to pick up... but here are a few of them.

What is the goal for population participation in this screening test among people with intellectual disabilities? Are you trying to get 100% participation... or are you trying to approach the same participation rate as you get with neurotypical (NT) folks? Because there are plenty of NT women who choose not to get that screen. They just never make an appointment for it, or simply decline when asked, and nobody comes to physically compel or sedate them...

Among the values the physician has to weigh are the concepts of personal autonomy versus substituted judgment. With children, NT or otherwise, parents get to make a lot of decisions (no child is going to choose a vaccination or even to go to the doctor at all...) At the other end of life, if dementia or other incompetency comes in to play, there are procedures in place such that people who know the patient and know of their previously-expressed healthcare wishes can make decisions on their behalf. So then you have the question: at what level is substituted judgment appropriate with developmentally-delayed or intellectually disabled adults, who may express preferences counter to prevailing medical advice?

Part of the conversation around any particular screen has to include the effectiveness of early detection (will it help?), the efficacy of the test (how many of the whatever-it-is does it actually catch?), and the question of what the next step would be based on results one way of another. Of course, this conversation applies to NT decision-making too! (Witness the recent change in breast-cancer screening recommendations. Dr. Schwab actually used breast-cancer as an example, and his comments back then are not out of line with the latest recommendations.)

Dr. Schwab made some important observations about going down the road of compelling a patient to be screened against her wishes. What, for example, is the consequence to a woman when she may have been taught protective behaviors all her life around her "private parts" and then she experiences a violation of that in the doctor's office? What message do we send to a person if we promote the idea that people with disabilities have rights and thoughts and opinions that matter -- but not in the doctor's office? What message do we send to the community?

He also said that his experience with partial sedation in such situations has been poor. People who come in under sedation often feel more confused and worried than they already were, feeling even less in control and more abused than they already did.

It's important to be aware that there are modified versions of exams that can be done if the physician is trained and willing. Dr. Schwab described in some detail a modified pelvic exam that involves no stirrups, more reassurance and eye contact (rather than hiding impersonally behind a drape), and no speculum until/unless it's deemed acceptable at the very end of the exam.

The lecture was a little bit cut-and-pasted from its original form, and what's posted right now doesn't actually answer the question of what really did happen with Jennifer (to the extent that she's a real person and not partially hypothetical?) Based on the rest of the content, though, I think I might have a pretty good guess as to what direction the doctor would have been advocating for her.

I think that "Jennifer" and Dr. Schwab's other patients are fortunate people.

Tuesday, December 1, 2009

Random Tuesday Thoughts

I think I'm still on a Thanksgiving-turkey tryptophan buzz. Hope you're up for some randomness, 'cause that's all you're getting today!

  • What a whirlwind of a holiday weekend! Much baking of pies Thursday morning, much gobbling and chattering Thursday evening at Auntie S's place. Different lodgings both Friday and Saturday nights, several sets of family gatherings, whoo!

  • I'm not going to see the movie "Four Christmases." Who needs to go to the theatre to experience multiple family holiday gatherings stacked one atop the other?

  • Joy was a super little traveler. She's so content to ride along in her carseat, especially if we toss her a toy now and then. Rose actually demands more attention than Joy, can you believe?

  • Thursday night we stayed over with Uncle Marathon & Auntie Save-the-Tatas. They have a brand-new kitten that Rose just swooned over (the more so because I have allergies so she can't have a kitty of her own). Joy was willing to give the kitty a pat or two, but she REALLY wanted to play with: the cat toys. We came home with a toy which has a ball & jingle bell on top of a spring growing out of a stand. I am not exaggerating when I say this toy had a catnip-like effect on Joy!!

  • Our Friday visit was to my grandmother, who turned 100 last May. Our visit happened to fall during her move from her retirement apartment across the street into an assisted-living apartment. I want to be not-quite-ready to move into assisted-living when I'm 100... I hope that her new place, bright and sparkling, begins to feel homelike soon.

  • Grandma took us out to dinner Friday night. Joy drank from an open plastic-glass at the Old Country Buffet! Without spilling a drop! Two glasses of lemonade and was asking for more!

  • Saturday we got to see Auntie RatM and Auntie Meerkat -- it had been a long time! We got to take them to the park to play with the girls. Rose swirled herself down the firepole over and over, with great drama. Joy let me guide her in climbing up a somewhat wobbly web-like climber up to the slide platform. What a trooper.

  • More Joy awesomeness, quoting from her OT's update last week: "This kiddo is pretty amazing at motor planning those activities which she's motivated for! ... When [Joy] wants something she's crafty, smart, clever, strong, and fairly precise with her movements. What a great kid!"

  • When I read an update like that, it's no wonder I get confused about labels. In a good way, though.

  • I wonder how many blogposts are waiting for me in my Google Reader? Maybe I'll go find out.