Connecting With "Thank You"

It started with the prelude-hymn on the Sunday-before-Thanksgiving.

You've got a place at the welcome table,
You've got a place at the welcome table some of these days,
Alleluia!

Joy was sitting between me and her respite provider, fingers in her ears as the singing went on around her, but content enough to eat some pretzels and stay with us in the service a little while.

Then came the call to worship, a responsive reading:

The world is filled with the glory of God, and we say,
Thank you!
The hills and valleys are filled with colour, and we say,
Thank you!
The vines and trees are filled with fruit, and we say,
Thank you!
Our tables are overflowing with food, and we say,
Thank you!
Our life is filled with love of family and friends, and we say,
Thank you!
We fill this house of God with our voices, saying,
Thank you!
May the words of our mouths and the meditations of our hearts be acceptable to you, O God, as we enter into this service of thanksgiving and praise.
-- written by Carol Penner 

A light came into Joy's face as she heard me and the congregation chime in with the first "Thank you!" and she responded too, with an audible "geh guh!" into the breath between the congregation's part and the leader's part.  These were words she knew, and a sequence she could relate to!  I quickly brought the bulletin down to her eye-level, and spoke the next "Thank you!" with an extra smile and emphasis for her, and she spoke up again too.  By the end of the litany, I was holding her hand and touching the "Thank you!" with her each time it came up -- those pre-reading practices from school have broad application, it seems.

Such smiles and speaking up from Joy!  She'd never before connected with anything in a worship service quite so enthusiastically.  And in the glow of that connection, she was able to stay with us longer into the service than she usually makes it: through the next hymn ("Come, Ye Thankful People Come") and the lighting of the peace lamp and the Children's Time, which was also all about Thank You.

When we got to the Joys and Concerns time in the service, close to the end and long after Joy had bailed, I felt moved to speak up about what had happened during the call to worship.  I pointed out to my brothers and sisters gathered together there, that even though I didn't know whether Joy had been saying "thank you" or "you're welcome!" as she piped up during the call to worship, she had connected with "Thank You!" and that was enough -- and deeply moving to me.  And I thanked the congregation for making a welcoming space for Joy's participation to happen, on her terms.

We had a place at the welcome table, indeed.

I was further moved last night to find the following Thanksgiving Day Facebook status-update from the worship leader who had planned the service:

Lesson this week. All you have to be able to connect with is "thank you". That is enough. That is everything.

We've had so many thanksgivings in the past couple of weeks, they've kind of been tumbling over one another.  I could write about at least three new Joy-milestones we hit just yesterday in our Thanksgiving day-trip and family gathering!  The connecting-with-thank-you moment at church had receded in my mind amidst the other exciting happenings.

I thank my friend for bringing our own lesson back for me, in such well-chosen and meaningful words.

I share that lesson with you, dear readers, surrounded in its original Joy-context, so that it can be yours now too.

Thank you.

Fit to be Tied

Most Sunday evening at our church, you can find worshipers wearing clothing that runs the gamut from business-casual all the way to gardening or bicycle-wear. We've got a tradition of coming-as-we-are to worship, secure in the belief that God loves us as we are and we don't need to prove our devotion with fancy garb.

However, the other Sunday a group of young men from the Mennonite Voluntary Service household showed up wearing neckties, something we'd never seen them do before! One of the volunteers is getting married soon, and they invited us to help him get used to the idea of dressing up for the wedding by wearing ties on Sunday evening in solidarity. So ties have been appearing around the necks of unexpected people at church recently.

Last Sunday I saw a delightful interaction. Joy's former daycare buddy has a younger sister, an adorable curly-haired toddler, not yet two. Little Sister was sitting on her daddy's lap during the service, giggling over his necktie, which he never wears ordinarily. She was trying to stick the end of the tie into his mouth, and he was playing along, lipping at it and then pretending to spit it out. Just the sort of playful little back-and-forth interaction that automatically happens when you enter the average little tyke's world during the peek-a-boo years.

Not every family gets to have that experience with their toddler, though.

Joy certainly wasn't interested in that kind of back-and-forth interactive people play at that age.

So I'm feeling extra-blessed and grateful that we're getting it now.

There's been just an explosion of back-and-forth giggly-games in the past few weeks, building on the "funniest things in the world" snippets that I've posted about occasionally this past year. The game might involve yawning back and forth. It might involve her greeting one of her therapists with an expectant "woof! woof!" at the door (shades of John Elder Robison!) There have been "in, out" games involving toys and a bucket. There have been "on, off" games around stacker-toys (and, less ideally, light switches!) Lots of peek-a-boo, with variations: "bye-bye / HELLO!" "Where's the turkey? / GOBBLE-GOBBLE-GOBBLE!"

My favorite recent game, though, goes like this:
Joy comes over and leans on me for a cuddle and says "NNNNIGH-nigh!"
Then I hug her, stroke her hair, pat her shoulder.
Then she pops up with a mischievous twinkle and announces "GUCK-guh!" (wake up!) And then we giggle and do it all over again -- JoyDad and Joy are upstairs playing the nigh-night game as we speak.

Y'know, I could tie myself into all sorts of regretful knots, in the comparison that Joy is only NOW doing -- at the age of almost seven -- what comes naturally to a kiddo five years younger.

I choose instead to rejoice in our blessings, and to enjoy this delightful interactive peek-a-boo stage to its fullest.

Maybe I'll celebrate by wearing a tie to church tonight...

Denials and Affirmations

The amazing story in Wisconsin continues apace.

You would think that complying with a direct temporary-restraining-order (TRO) from a circuit court judge would be a no-brainer for the governor and legislators. Accept the judge's temporary order, play the case out, then appeal if you think the outcome was unjust.

But in Wisconsin, we've apparently got no-brainers in charge of both the executive and legislative branches.

At issue is Act 10, THE BILL, the supposedly non-fiscal version of the so-called Budget Repair bill (!!). This is the legislation that essentially kills collective bargaining for public employees in Wisconsin, gives the Medicaid-hostile Secretary of DHS unprecedented new powers, eliminates the organization that does payroll and beyond for Joy's respite-care provider, whacks the JoyParents' paychecks, and more.

I'm not even going to try to recap the torturous route that Act 10 has taken over these past weeks, but we've gone rollercoasting from celebration to mouths-hanging-open at the lawlessness of the Walker administration, and that cycle has been repeating. Temporary injunctions! Defying the courts! Slapdowns in court proceedings! More defiance! More slapdown!

As of this writing, we're on a celebration cycle: right now, Act 10 is NOT law and NOT to be implemented. The judge ruled yesterday that the TRO remains in effect until late May, when the legislative session is over and the Walker cabal can no longer declare immunity and have to haul their sorry selves into her courtroom so she can actually finish the case and make a real ruling. (Of course, if they waive immunity like their Democratic counterparts did, they could get this all over much more quickly. Likewise, they could just go back and pass the bill over again, but they're afraid they don't have the votes and they're worried about the protestors!) Expect shenanigans, expect appeals. And vote JoAnne Kloppenburg for Wisconsin Supreme Court April 5, because the state supreme court is where all this is going to wind up.

One thing it's hard to deny is that we're winning on the recall front. Less than halfway through the 60-day signature collecting window, the recall campaign has filed sufficient signatures to recall Sen. Dan Kapanke (R - LaCrosse). His recall election will be the first to happen -- more will reach their signature goals after a flood of signatures is collected adjacent to polling places on April 5. The recall organizers have announced that they're confident that there will be elections in six of the eight efforts to recall Republican state senators in Wisconsin -- which they wouldn't be saying publicly if they weren't very sure. SIX! And we only need to flip three of those districts to regain control of the state senate!

There's an inspirational recall-campaign ad that I'd like to share with you, that captures some of the passion and determination driving this movement. Well worth a minute of your time to watch:



Whether you're in Wisconsin or not, if you would like to affirm your support for workers' rights and beyond, you might be interested to know that there are events all over the country on April 4 and the week to come. Why April 4?

Martin Luther King Jr. was assassinated on April 4, 1968, in Memphis, Tenn., where he was standing with sanitation workers demanding their dream of a better life.

There are over 600 events scheduled across the country in the upcoming week in conjunction with this commemoration. Find one near you.

In the midst of all this, the JoyFamily received some powerful affirmations this week.

It dates back to the church retreat in February, the one at which I coordinated a craft-project to make Medicaid-related protest signs.

We had to leave early before the Sunday morning worship so we could take the signs to a Medicaid-related press conference. So we missed the conclusion of an activity that had been going on all weekend, in which every retreat attendee's name was written on a brightly-colored slip of paper and people could drop by the table to write anonymous affirmations.

The JoyFamily's affirmation slips made their way into our hands just this past Sunday.

Rose squirreled hers away to be a private source of delight. I'm going to share from the other three, though.

A snippet from JoyDad's:

"I really appreciate your thinking -- your knowing
that what happens to one affects all."
A snippet from JoyMama's:

"You have such perspective on anything you're passionate about & you draw me into your passion. Love it!"
And the affirmations from Joy's sheet, in their entirety:

We are so glad you could be at Retreat!

I value all you teach us.

I love to see your smiling face.

You explore, connect, and explore some more. Thank you for your spirit.

Thank you for everything you teach us, and for being your unique self.

The tears are welling again as I type Joy's affirmations, as the tears came down when I read the sheet to her out loud. We are blessed, so wonderfully blessed, to be part of such an affirming and caring church community.

Learning Curve

"Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."
Matt. 25:40, from a parable of Jesus

I heard something from Joy last night that came as a total surprise, something long awaited, something I've wanted to teach but I didn't know how.

She said, "Sorry."

It wasn't just once either -- it was all of three times! Granted all three were echoes, prompted by adults. And I'm not at all happy about the incidents that prompted the need for apology: a hairpull, throwing a toy in the church nursery, tromping hard on her sister's toes. I'm simply rejoicing, however, that she's able to make that echo, no matter how much she understands or doesn't! It will make peer relations so much easier.

"Sorry" has a steep learning curve. I'm engaged in a process with a steep learning curve as well.

I gave a presentation last night to the adult Sunday-school class for my congregation, on Medicaid in Wisconsin and the so-called "budget-repair" bill. Members of our congregation have been deeply involved in citizen action in the wake of the various threats represented by the bill: to livelihoods, to the right to negotiate collectively, to the University of Wisconsin, to public education, to our economy as a whole, and so many more. People from our congregation have marched, written letters, signed petitions, shared information, and even had a group sleepover at the Capitol building on Thursday night (complete with kids!) I was moved by the enthusiasm at last weekend's retreat, creating a lovely pile of protest signs about the still-little-understood threat to medical assistance and public input that the bill contains.

At the retreat sign-making activity, I found myself asked to explain exactly what I meant when I said "Medicaid" and "medical assistance" and "BadgerCare," and found myself coming up short. Fortunately the press event that next afternoon got me started with a lot of information that I then wanted to share. I did share some of it here on the blog, but Medicaid is a complex program with many, many parts. I realized that I was feeling called upon to share still more, and to ask my congregation for further commitment and action.

So I offered to teach an adult Sunday-school class, and they gave it to me right away.

I wish I could do justice to the insightful questions and comments that came up during those 45 minutes. I was surely pushing the limits of my expertise, and others -- doctors, social workers, MA recipients -- chimed in with a will. One comment right at the end of the session, though, reminded me most poignantly how much I still have to learn.

I am coming from a frame where my family receives medical assistance funds for the purpose of making it possible for my daughter Joy to live at home rather than in an institution. During my LEND fellowship last year I heard a great deal about the history in Wisconsin and beyond of the policy shifts than now enable people with disabilities to move out of institutions into the community or to avoid institutions altogether, generally at significant cost savings. I also heard moving stories at last week's press event from people who rely on Medicaid dollars to live as productive community members, and are scared beyond belief that their support will be taken away and they will be warehoused in nursing homes.

This bias rang so loudly through my presentation that I failed to acknowledge the immense, vital role played by institutional facilities in situations where people's needs are so great and complex that living at home or in the community is not the best, or healthiest, or even survivable choice. And the commenter was deeply concerned about that aspect of my presentation.

Shoot, I knew better! I'd only to think of GrammaJ, now in her last days in a hospice facility. GrampaK could never have taken care of her at home these weeks!

So I needed to get called on it, a painful but necessary public corrective. Indeed, the voices of those who need such a level of care are even less represented than those who are succeeding in the community. Truly "the least of these" when it comes to having a voice in the public debate. Their funding is at risk too.

I listened. I let my thoughts be changed. I acknowledged my shortcoming, and apologized.

There is precious little listening coming from the Governor of Wisconsin and most of the legislators of his party who have (for the most part) been marching in lock step with the bill and its outrages and its timing.

However, word has it that one of the Republican state senators who has previously been in favor of the bill, has now changed his mind and says he will vote against it: Sen. Dale Schultz of District 17. He can be thanked at sen.schultz@legis.wisconsin.gov. Only two additional no-votes are needed. Update: the previous paragraph now appears to have been an unconfirmed rumor. Sigh.

There have been calls for Governor Scott Walker to begin listening, and mind-changing, and even perhaps apologizing. This scenario is not likely. But minds and hearts will need to be open to change, to negotiation, to the needs of the vulnerable, in order for the outcome of this budget process to be anything but catastrophic.

==========

So as to end on a lighter note, I'll close this morning with a joke that's making the rounds on Facebook. Peace out!

A unionized public employee, a member of the Tea Party, and a CEO are sitting at a table. In the middle of the table there is a plate with a dozen cookies on it. The CEO reaches across and takes 11 cookies, then looks at the Tea Partier, and says, "Look out for that union guy, he wants a piece of your cookie."

Praying With Our Feet -- and Our Magic Markers

"Budgets are moral documents."
-- Jim Wallis, Sojourners

In my Saturday morning post, I spoke of taking a Sabbath and not posting on the 20th.

My congregation was holding a weekend retreat at a center about an hour's drive away, and the JoyFamily drove there Saturday morning for a 24-hour getaway.

We needed the break, from the news and the protests and the computers. The week had been exhausting, days on end with insufficient sleep and way too much adrenaline.

However, the retreat also provided a safe space to go in deeper. With our friends, we were able to explore the moral dimensions of the budget proposal and the protests, in thoughtful conversation and in prayer.

I also brought a bunch of posterboard and a fistful of markers to offer an additional option for a craft project activity: making signs to highlight the Medicaid issue, to be conveyed to the press event on Sunday afternoon.

Several of the signs alluded to the moral implications of the budget-repair bill. I particularly liked the ones that said, "Don't deny a voice for the vulnerable." Two of those signs wound up on the wall right behind the heads of the speakers at the press event, in direct camera view.

But even more touching to me was a sign colored by a little fellow of the age of six, just two days older than Joy. For the first two years of Joy's life, our family did a daycare swap with this little guy's family, so he and she were daycare buddies up to the age of two. They've not been close lately, as he is on a typical developmental path and she is on a path all her own; but he really wanted to create a sign, and his mom traced the words "Protect Medicaid" for him to color and explained just a little bit that this was to help Joy and others like her.

His was the sign I chose to hold at the front of the room at the press event (held here by JoyDad on the bus on the way home.)

If you follow the online debate about Wisconsin's budget, or listen to certain newscasts, you will hear the protesters described as greedy, as rioters, possibly even as un-American.

I'd offer the personal view of protesters as people of peace and conscience and deep conviction, many of us as people of faith. I'm reminded of the children's book that was inspired by our congregation in 2005, Praying with our Feet, about taking peaceful, prayerful action for a peaceful world in the face of an unjust war. (The book is out-of-print but can still be acquired through various vendors at the link.)

We're praying in many ways this week. With our feet at the Capitol building. With our magic markers. With our letters to the editor and our calls and e-mails to our legislators.

Please add your prayers / thoughts / positive energies to ours, in any way you feel so moved.

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.

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:

• Snow Day
  
  
• Elvis Wants a Cookie
  
  
• A Dream
  
  
• You're Always Doing Something
  
  
• Kisses in High Places

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!

A Dream

The women of our congregation met at the church for women's retreat this weekend.

One of the women at the retreat went home afterward and dreamed about my daughter Joy.

In her dream, there was a man sitting and speaking to a group of people. He was speaking in long, complex, difficult-to-understand constructions.

Joy was with him, maybe on his lap or next to him. And she was translating for him. He'd say some long wordy something, and then she'd say just a few simple words that distilled it down and made it understandable.

My friend said that in the dream she was motioning to me, "JoyMama, come see this, did you know that she could DO this?!"

Joy already helps me understand some things that I might never have come to on my own -- about difference, about acceptance, about hope, about God working in the world.

I fully expect that she will continue to be an intermediary to my understanding, and the understanding of others around her. So much she has to teach us, if we only pay attention!

I am awestruck that Joy's presence touched my friend's dreaming to convey and reinforce that message.

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.

What's the Buzz, Tell Me What's Happening?

On Sunday Joy was still getting used to the new "buzz". (As were we all.) She stopped attempting to pull almost immediately, and started occasionally doing what I like to do with it... rub her hands all over it. Not ideal at meals, but hey, clean-up is a breeze!

I also like to kiss that darling fuzzy head. Awwww.

I think the new cut makes you focus more on her gorgeous features. Like the long eye-lashes, and the glorious smile.

We also noticed that the cut makes her look startlingly like a certain little boy in old home videos from Chicago in the 1960s. Except it's not so much JoyDad. It's his older brother, Uncle Marathon. I'll have the family weigh in on this at Easter time, see if they see what JoyDad and I see. Meanwhile, let me assure you all, there has been NO wife-swapping going on!!

It was interesting taking Joy to church all shorn on Sunday evening. We had her dressed in a gender-neutral orange long-sleeved T-shirt, and from behind she was easy to confuse with another little blond guy in her Sunday school class, though his "buzz" is not currently so extreme!

Little-blond-guy's dad advised me that if we were going to maintain this hairstyle, the best bet for a sturdy effective trimmer would be to go to Farm & Fleet and get one from the animals section. The one their family uses is marketed for dogs. He said this tip came from a hairstylist who said the animal-coat trimmers are made by the same manufacturers as the salon trimmers for humans, but sold for a fraction of the cost. Who knew?

I was also reminded at the Sunday service that there are at least two adult women in the congregation who are currently sporting buzzcuts. Joy is in stunning company there as well.

Finally, I'll leave you with this poem that was printed on the bulletin and used in the service. It's called Walking Blessing, and reminds me of blogfriends who have been walking for a cause, like jesswilson and rhemashope. It also resonates for the journey as a parent walking with a spectrum (rainbow) child. Here 'tis:

Walking Blessing
by Jan L. Richardson

That each step may be a shedding
That you will let yourself become lost
That when it looks like you're going backwards
you may be making progress
That progress is not the goal anyway
but presence to the feel of the path on your skin,
to the way it reshapes you, in each place it makes contact
to the way you cannot see it
until the moment you have stepped out.


Peace.

Spectrum of Faith and Doubt

This Lenten season, our church has been doing a series called "The Spectrum of Faith and Doubt." Lots of reflection on the nature of faith, doubt, and the interaction and relationship between the two. For me the most powerful part of the series has been the short reflections every week by members of the congregation that fall into the confessional genre; as in, confessions of faith. And confessions of shattering struggles with doubt as well.

I was struck by something that was said last Sunday, questioning the use of spectrum imagery for faith and doubt. The imagery somehow implies that the two fall on opposite ends of some kind of Likert scale (e.g., 5=very good, 1=very bad) rather than the complex interaction and co-existence that is perhaps more common to most people's experience.

It reminds me of a similar pitfall in the use of spectrum imagery for autism, as if we could line people up "on the spectrum" in order of high-functioning to low-functioning, long wavelength to short wavelength, (very good to very bad?) Ummm. Not particularly helpful, to state it mildly.

Some challenges are surely more profound and disturbing than others. There have been some sobering stories echoing through the blogosphere lately. The perfect metaphor, both for autism and for faith, would capture that. Ultraviolet rays can cause skin cancer... look right into the sun too long and you'll burn out your retinas...

On the other hand, which color is the more beautiful, red or violet or something in between? What's the 5, what's the 1, and to what extent must it matter so much? Which person is less a valued and beloved child of God, the one in a place of confident faith or the one eaten to shreds by doubt? The "low-functioning" or "high-functioning" autist?

I think the beauty of the rainbow inherent in the spectrum imagery has a lot going for it, not least the symbolism of the rainbow in the book of Genesis:

And God said, "This is the sign of the covenant which I make between me and you and every living creature that is with you, for all future generations: I set my bow in the cloud, and it shall be a sign of the covenant between me and the earth." Genesis 9:12-13

Photo credit listentoreason under CreativeCommons license.

Hoop Dreams

OK, I got some of the leftovers off my plate. Drew up a press kit page for the handbells web site, revised a document regarding Joy's strengths and our ongoing concerns for her upcoming IEP, and (this is a big one) got the files sent to the printer for the book of my late mother's autobiographical writings that I've been working on editing.

Now I can write about the weekend.

Our big event this weekend was our church's annual winter retreat. Every February we gather at a retreat center by a state park about an hour's drive from here for a weekend of fellowship and a Sunday morning worship service. There are games, there are crafts, there are communally-prepared meals, there's a talent show, there's sledding and skiing and hiking. It's a wonderful time.

February 2008 (i.e. last year's) retreat was a disaster as far as Joy was concerned. She was still slumping from a big regression that had started that Christmas, which stole her language and affected her behavior. She was having several knock-down seizures a day, each of which took an hour of intense comforting to recover from. In retrospect, we think there may have been a virus involved too somewhere along the line. At any rate, we took her to retreat anyway, and she just got more and more miserable as we went. In between seizures she went tearing around the center fussing and leaving a trail of destruction. We were hoping that naptime would be at least a break, but instead of napping or playing quietly, she stood up in her tented pack-n-play and screamed bloodly murder. For ages, with no sign of stopping. Finally JoyDad took her home. I stayed at the retreat with Rose, exhausted and wrung out like a limp washrag. It was a hard time.

This year was a huge contrast.

Touch wood, y'all, but Joy hasn't had a knock-down seizure since mid-September. That was the first major thing. Second, she did not have the Christmas regression. Third, her boundaries have improved and she's more willing to hang out quietly on my lap while something else is going on. Fourth, her mood is happier on the whole.

With this background, I was willing to even take the girls to retreat solo on Saturday morning. (JoyDad came up later that afternoon; he had a memorial service to attend at noon.) Joy was contented throughout the slightly nerve-wracking trip as the snow was falling pretty hard. When we arrived, we had a friend all lined up to watch Joy while I unpacked the car. Joy hung nicely with me through the next event, which was a group game involving speed-singing of hymns and competitive reading of Bible verses all full of unpronounceable names. Much hilarity!

Since Joy has been skipping naps most days anyway, we didn't even try to put her into her travel tent. Instead, another friend volunteered to watch her for a while so I could go participate in a book discussion. Funny enough, the book discussion actually was sparked by this humble blog, from when I posted back in November about Tracy Kidder's book Mountains Beyond Mountains. A friend from church who keeps up with Elvis Sightings was intrigued by my recommendation and organized a group of people to read the book and discuss it at retreat! It was a fine conversation, with thoughtful articulate people, several of whom had been to Haiti themselves and/or work in medical professions (the book deals with a charismatic physician whose primary work is among the poor in Haiti). All in the context of beautiful snow falling gently outside the huge windows.

When I got back to Joy, her baby-sitter -- who has a grown son with a spectrum diagnosis in context of a different genetic condition than Joy's -- said they'd enjoyed their time together. "She's very smart, you know," she told me. Bless her for seeing it!

Our smart little girl kept it all together despite the lack of nap. She even surprised us at dinner time by eating her entire helping of macaroni with her spoon, with no prompting from us! She usually digs in with her fingers.

But when are we going to get to the hula hoops, you ask? Well, I'm glad you brought that up.

I mentioned earlier that the retreat features a talent show. This year, Rose decided that she wanted to do a hula hoop act. So she and JoyDad concocted a number wherein JoyDad played Wipe Out on his electric guitar. She has never taken a dance class, and I (not a dancer by any means) have been her only hula hoop teacher. However, she has such a sense of rhythm and has done a bit of group dance routine stuff in gym. And with those natural tools, she put together a wonderful piece where she shimmied and strutted back and forth with that hula hoop a-swirling, dropped to her knees and came back up repeatedly, and then let the hoop drop to her ankle and hopscotched it around with the other foot. All in perfect time to the screaming guitar.

The crowd went wild.

Video of this amazing act does exist, but we've got some technical hurdles before we get it onto YouTube. If you'd like me to e-mail you the link when we get it ready, say so in the comments or send me a message.

But that wasn't all. See, Rose decided to share her hula-hooping delight in another way. She brought all seven of her hoops along, and made them available in the main gathering room for the use of all the retreat participants. (I did promise that I'd replace any breakage.) It was amazing how the hoops resonated with all ages and shapes of people. From the short to the tall, from the curvy to the beanpole, from the toddlers to the highschoolers -- male and female both! -- to the highschoolers' parents, a huge range of folks got into the act. The height of the hilarity happened after the post-talent-show ice cream feast, when JoyDad plugged his guitar back in and played music to hoop by: more Wipe Out, Johnny B. Goode, one song after another after another. He played till he started to wear out the fingernail on his pick hand!

Well, some of the attendees were joking that hula hooping might lead to... DANCING! (verboten among the more conservative Mennonites, but this crowd is pretty far out on the progressive end of the Menno spectrum, as it were.) And after JoyDad unplugged, sure enough, out came a couple of iPods to plug into the sound system. Line dancing! Cotton Eye Joe! Jump Around! My fellow Mennos and I boogied till I think I strained every muscle in my body that hadn't already been hula-hooped out of whack.

Then I played Boggle till midnight. Which made 20 hours straight of wakefulness, seeing as how Rose had awakened me at 4 am Saturday morning to present me with one of her two front teeth which she had finally wiggled out.

Then Joy woke up at 2:30 and started commenting loudly... I'm afraid I don't remember much of the next morning's worship service, though they tell me I was physically present. It was quite the night.

I actually did make it to the regular evening worship on Sunday too, after everyone had headed home and sorted themselves out. Rose surprised me during the sharing time part of our service ("joys & concerns"). She stood up on the chairs and declared loudly that she had a joy. She wanted everyone to know she was so happy that people had so much fun with her hula hoops at retreat.

There. As JoyDad commented on my last post, this is probably the only blog on the Interwebz that combines hula hoops, dancing Mennonites, and screaming guitars!

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.

========

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.

========

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.

Spin, Spin, Spin Redux (and Photo Wednesday)

Oh, how the plates have been spinning these past few weeks!

In addition to the usual insanity, we've had:

The bells, bells, bells! In the space of 16 days I had 4 handbell rehearsals and 9 performances. The final one for the season was last night. At a retirement center. In a snowstorm. Have I ever mentioned that JoyDad is a saint?


Drop me an e-mail if you want a link to online bell-video...

(spin, spin, spin)

Christmas cards & annual form letters! (No, really. We write a good one. Honest.) We've got so many friends, lived in so many places, etc. Our print run currently stands at 140. No, they are not yet all sent, though we've got a good start.


(spin, spin, spin)

Cookies! For our own faces and extended family, for friends, for office mates, for therapists, for a cookie exchange party tomorrow (I'm going to take Joy to an office party, possibly in another snowstorm, should be a hoot!) In addition to the peppernuts referenced in yesterday's comments, I've also done two rounds of Any Flavor Jello Cookies. Everything's better with butter in the batter...


(spin, spin, spin)

Trim up the tree! And fix up what goes beneath it as well! The Christmas shopping is almost all done... but Rose is the only one who has yet wrapped a present for under the tree. By the way, she figured out Santa Claus this year, but she still wants to hang a stocking to get her full share of loot. How FAST they grow up!


(spin, spin, spin)

So far there haven't been too many plates crashing down, though I failed to read Lynda's note that Joy needed diapers and wipes for daycare...

I'm gonna be really ready for a vacation though.

What's that? No school, no daycare, kids home all day for nearly two weeks? Starting next week?

Augghhhhhhh..... crasshhhhhhhhh

Getting Giggles, Take 2

Way back in August I posted how Joy had a reputation at daycare for getting giggles.

We've just found a new context, with a zombie-parents twist.

Joy's difficulties in getting to sleep are continuing, particularly at home. She is managing to nap some at daycare, whether due to peer pressure or her Peapod Plus travel bed or her borrowed weighted blanket (top priority for this week - chasing down our OT to give a weight-recommendation so we can obtain such a blanket for home too).

I almost thought I was seeing a pattern where the few nights she was sleeping through were happening after those daycare naps. That pattern broke with a crash on Friday night, though, after a deep 2-hour daycare nap. That night she almost didn't let the melatonin put her to sleep at bedtime, then woke up at 12:30. I thought I'd try something different, and took her to attempt co-sleeping in the guestroom. She didn't do more than drowse the rest of the night (though at least she was fairly quiet), and I didn't want to take her back to the crib to hoot & holler until JoyDad was up for the day, because that would killed the rest of the night for BOTH of us.

Anyway. We decided to try cutting out naps altogether for the weekend. Not that she'd been actually napping at home for quite a while, but at least we'd been putting her in the tented crib for "quiet time" for a chunk of the afternoon.

Saturday, after playing outside in fallen leaves instead of napping, Joy got very snoozly and almost fell asleep on the floor in the late afternoon, but perked up some after dinner. Then as bedtime approached, she started getting giggly. Wild, over-the-top giggles. At first it made us laugh too, until it was clear that quiet lullabies and rocking and even the melatonin weren't causing the giggles to stop. So we just put her to bed, where she giggled and thrashed for about 5 minutes before crashing into sleep.

Slept all night, it was very very nice!

Tried it again on Sunday. I realized that I'd heard those giggles recently before. They had happened when she'd awakened at 2:30 or 3am on previous nights, and had been vocalizing for 2 or 3 hours -- the vocalizations would change to those wild giggles. Overtired, perhaps?

Joy's church volunteers reported that she was quiet, tired, low-energy all evening. It wasn't until we got her home and started getting ready for bed... that the wild giggles began again.

This time they didn't stop when she went into the crib. It took something like an hour and a half to crazy-giggle herself to sleep, which wound her parents up enough to push their sleep even later than that. But at least she slept through, which was something.

The saga continues! Tee hee hee hee! MuuuuAH-HA-HA-HA! Zzzzzzzz....

Church-Ladies in the Wild Woods

Or is that wild church-ladies in the woods?

Every year at about this time, the women of my congregation take a much-needed getaway: Women's Retreat. We go out to a retreat center north of here, and from Saturday morning to Sunday noon we hike, talk, reflect, do handwork, worship, sing, and enjoy one another's company and the break from the day-to-day.

Last year Joy came down with a 24-hour tummy-bug, not a week before the retreat. I was up all night holding her as she retched. "I mustn't catch this," I told myself sternly. "I want to go to women's retreat!"

Then a day or two later, Rose caught the bug. Again I was up all night with her, positioning the bucket at 45-minute intervals. "I won't catch this," I promised myself. "I'm going to go to women's retreat!"

Friday came around and I packed up my things for the next morning's departure, still feeling fine. And then...

JoyDad started feeling rumbly in the tummy.

Hadn't even thought of that! But there went the daughter-care for the weekend. I stayed home and took care of the girls (and him, though he didn't let me hold the bucket) while he retched, and missed the retreat. And then, insult to injury, came down with a mild version of the bug myself the following Monday.

This year? I'm fighting a cold, and so is JoyDad. Plus, Joy has discovered how to keep herself from falling asleep, for hours at a time. She stims on her blankets or stuffed animals, and vocalizes loudly. This applies to nap, to bedtime, and lately to wake-ups in the middle of the night too. Rose sleeps through it, but JoyDad and I are missing big chunks of sleep (as we try to fight our colds).

I'm still planning to go to women's retreat, though! The theme this year is "The Power to Lift Up." I'm expecting a beautiful, uplifting time -- our pastor (yes, a woman) always does such a lovely Sunday-morning worship at retreat, and the setting is idyllic, and the company is fantastic. And the craft project is related to the uplifting theme as well...

Wild church-ladies in the northwoods. Can't wait. Think good "sleepy-Joy" and "cold-B-gone" thoughts for us.

Pumpkin photos when I get back!

The Top Ten Things

JoyDad and I had a wonderful opportunity last Sunday to talk with part of Joy's community.

Our church invited us to give a presentation to the adult Sunday-school class, which is basically anybody who isn't involved with teaching the children's Sunday-school classes. This was our first go-around with an occasional series that they call "Families Living with Disabilities," where they've asked other families to speak in the past, to let the church community know where things stand with their child's extra challenges and how the congregation can help.

The church is already helping immensely. In addition to prayer support, there are also two rotations of volunteers who serve as one-on-one aides. Joy gets an aide during Sunday-school hour, and another for the nursery during worship (and for several minutes afterwards so that I can talk to people without Joy-chasing). Fortunately she rolls really well with having two different aides each Sunday, and different people on first Sunday of the month, second Sunday etc.

This was an opportunity to add to that, and fill people in who aren't so involved with Joy week to week.

So I wrote, and JoyDad and I presented, a 45-minute session with question-and-answer at the end. We broke it into five parts:

• Top ten things Joy is good at


• Chronology


• What are we doing now?


• How can we invite you to interact with and nurture Joy as part of this community?


• Question-and-answer

Both of us can get pretty chatty when we're on a roll, and the chronology part (what happened with Joy when?) had all kinds of opportunity for digression! We ended up cutting out most of the "What are we doing now" so we could get to the suggestions and still have time for Q&A, but it ended up working pretty well.

Here are some highlights!

First, the Top Ten list. We wanted to make sure that we started out with ability, because it's tempting to only talk about the "DIS." Here's what we offered as the Top Ten Things Joy is Good At:

10) Taking her medicine! (pills and liquid in an oral syringe, 3x per day)

9) Peek-a-boo (she’s just learned to cover her own face with the blanket too!)

8) Getting set for meals (climbs into her chair, buckles up, and puts on her stretchy neck bib)

7) Eating meals (she eats widely and enthusiastically)

6) Asking for more food! (operative word is "mo")

5) Post-diaper routine (opens the drawer, puts in the diaper cream, closes the drawer)

4) Physical strength (the girl has been a powerhouse since birth)

3) Running. Fast. [The link is to Auntie Run-at-the-Mouth, who just linked to us!]

2) Escaping. By running. Fast. (She’d be a great running back; she always finds the daylight!)

1) Winning hearts. Her smile and laugh are utterly contagious, and you just can't help but smile back.

Then here are some of the suggestions we made for interactions with Joy:

1) Get physically on Joy’s level. Example of a powerful exercise I did during Hanen communication-therapy training, trying to have adult conversation where one partner is sitting and another standing, or one is standing behind the other, versus both being at the same level. It's terribly awkward; face-to-face communication is the way to go. (Rhemashope wrote a lovely reflection this week related to this, called "Stooping.")

2) Pare your language use back to the basics, to get it closer to the point that Joy might be able to reproduce herself. Example of teaching a baby to climb stairs – you wouldn’t go all the way to the top and holler for the baby to crawl clear up... you go just a step or two above and encourage them from there. Instead of "Okay Joy, it’s time to put your shoes on now!" try – "Joy! Shoes on!"

3) Imitate her. Treat her noises and movement as if they have meaning, repeat them back to her and then maybe add your guess as to what they mean. Example: if she’s playing with her fingers and says "Grrrr," you could repeat back "Grrr" and imitate what she’s doing with her hands and then add "fingers!"

4) Take turns. She does something, you do something, then you give her an extra pause to see if she’ll do something in return. Keep your turns short, because her turns won’t be long either.

The presentation has been turned into a podcast (42Mb MP3 file, 45 minutes long) and posted online. I don't want to link to it here for all the world to poke at, but if anyone is interested in hearing it, e-mail me and I will send out the link on an individual basis.

I might not get to you till Monday, though. We're going to the lake again, to see the fall colors and help close up the family cabins for the season.

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.

In Praise of Awesome Community

We now return to our originally-scheduled programming, which involves the enumeration of blessings.

First off, thanks to everyone who's been reading and commenting and sending prayers and positive thoughts about our Rats'm Frats'm Blankety-Blank Seizures. We're pretty clearly back in seizure-land at this point, going at the rate of one knock-down per day with several disorienting single-jerks (plus the ongoing internal electrical storm that has been present for the past two years at least). Good news is, there was only the one big blue-lipper so far. The subsequent ones have been about 10 seconds in duration and have been much easier to shake off.

Then there's the awesome meat-space community (so to speak)!

We've got such a wonderful network through our church. The mom with whom we used to daycare-swap has coordinated for us a full roster of volunteers to accompany Joy one-on-one at Sunday School and nursery, plus give me a few minutes before and after worship for conversation. There are enough volunteers that nobody needs to step in more than once a month, and Joy is accepting enough of a wide range of helpers that this rotating whirl doesn't seem to faze her.

There's also a strong neighborhood network. On Friday I needed to go to Rose's end-of-summer-camp party, which conflicted with one of Joy's home therapy sessions, and there needs to be a parent or other adult in the house for the therapy to take place. One phone call next door, and the neighbor on the other side of the fence (who brought the potato salad to the fence party) was all lined up to come on over.

I was able this week to line up two other neighborhood moms with Rose-aged kids to take on the regular task of getting Rose home from school on Tuesdays and Thursdays, because that too conflicts with Joy's therapy hours.

On top of that, I've got a list of eight families (spanning neighborhood and church) willing to be called on short notice if we are in need of a bit of respite Joy-care, plus three other families who didn't think Joy-care was up their alley but would help by bringing a meal if need be.

And then there's the dear friend who brought her daughter over for a spur-of-the-moment playdate Friday night after the end-of-summer-camp party, and brought wine as well so she & I could each have a glass as the summer sun went down...

I could list more, but that gives you a flavor for it! Community makes Joy's world go 'round. We are so very blessed.