Friday, November 23, 2012

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,
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.

Thursday, November 22, 2012


I know several people who are posting daily "thanksgivings" throughout November, either on Facebook or on their blogs.  I didn't take up that challenge, mostly because committing myself to one more daily obligation, no matter how soul-nourishing, would have been -- well, committing myself to one more daily obligation.

But I do believe I could have blogged a Joy-Thanksgiving pretty much every day of the month.  It has been an incredible November!

Here a just a few of the Joy-Thanksgiving events of November.  Milestones, not just inchstones!

Joy's participation in her school music class annual program was more robust than it's ever been.  Her music teacher burned a CD of the songs in the program to send home, and we loaded them up on Joy's iPad so she could listen to them at will.  This year's show was in honor of Veterans' Day, so we had patriotic music mixed in with Joy's usual Baby Einstein soundtrack.  Her favorites among the program were This Land is Your Land (mama approves, even if they didn't include the populist-protest verses!) and a little marching ditty called I am Proud to be an American (not the Lee Greenwood "God Bless the USA" song, thank goodness.)  On concert day, Joy's class was stationed at one end of the risers, so Joy could stand or sit with her staff members next to her class.  She marched in place a little bit in the right place, and waved a little flag, and made it through the whole show.  Proud, proud mama!

Some days later, when GrampaK came over for lunch one Saturday, I was telling him all about the concert and Joy's participation.  Joy was on the couch with her iPad -- and as I told Grampa about the songs on the iPad, all of a sudden the iPad started singing I am Proud to be an American.  Which means that Joy not only followed our conversation and acted upon it, but she also must have gone deliberately to the music-program song list rather than playing Baby Einstein.  Oh.  My.

Then there's this e-mail message to share from one of Joy's school staff the week after the music program, which sent me over the moon for the rest of the workday:
Just have to share my goosebumps delight from the first ten minutes of [Joy] and my day.  Tons of language in context.  No cue prompts.  We sailed thru our multiple tasks and I can't stop smiling.  Wish u had been here to share
That day, something came home that made me smile even wider:  Joy's first homework.  Oh, we've had schoolwork tasks come home before, but they were always framed in terms of showing us what Joy's working on in school, rather than actually being called HOMEWORK.  I was surprised how deeply this affected me -- all it entailed was a square 4x4 grid, on which Joy was to place smaller paper squares, using the terms "take" and "put."  But the importance of it was driven home a week later, when I was asked by another kiddo on the schoolyard, "Does Joy ever have homework?" and I was honestly able to say, "Yes.  Yes, she does."

In the wake of all that, you might guess how much smiling went on during Joy's parent-teacher conference mid-month!  I was surprised to see Joy's team so well represented, having only been sure that the teacher and case-manager would be there, but her student-teacher/SEA and her speech therapist and her occupational therapist were all there too.  So much good news to share, together with ideas for how to tweak things even better!

The best piece of news from that conference, as far as I was concerned, was the piece of construction-paper artwork above Joy's locker.  It turned out that they'd had a class project making construction-paper clouds with rainbow bands dangling below, where each cloud had the student's name and each rainbow band carried an adjective describing the students.  Most students came up with their own, but since that's not Joy's scene just yet, the teacher invited the students to help come up with a rainbow of adjectives for Joy.  She said they were just tumbling over one another with suggestions, and the themes were all directly from the kids.  Here's what they came up with:

Technical (they refined this one from "computer-y" in admiration for her iPad mad-skillz!)

Even after just a couple of months, my daughter's classmates know her really well, don't they?  Because that rainbow there is an awesome representation.

The LEND trainee who came along to observe the conference was deeply impressed, and we had a fine conversation afterward about the importance of inclusion even when a student isn't in the classroom.  (There's a whole 'nother blogpost in there, my friends!)

But wait, there's more.

This past week, Joy was invited to not just one but TWO birthday parties, together with her sister.  On back-to-back days, yet!  The first party was for a neighbor and the venue was a bounce-house facility.  How perfect is that?  Joy bounced and bounced, and repeatedly tossed a bouncy-basketball up through a basketball net (from the bottom up, rather than making a basket, but who's counting?)  Then after an hour and a half of bouncing and sliding, the kids all herded into a room with tables for cake and ice-cream and present-opening.  And Joy sat down between two kids she didn't know, with Rose a little way down on the other side of the table.  Once we got her served with goodies and lemonade, I went over to the edge of the room and sat on the benches with the other parents.  And stayed there, while Joy competently ate by herself and drank her drink and hung out uncomplainingly!

While I sat, a gregarious dad with a German accent served me cake, and then asked me if that blonde girl in the green shirt was my daughter.  "Yes," I said, preparing for the usual autism-solidarity conversation: is she on the spectrum, I have a close relative who is, etc.  "She looks so much like my niece!" was what I heard instead.  "I did a double-take, she could almost be her twin!"  JUST LIKE ANY OTHER KID.  No disability-related content to the conversation AT ALL.  I can hardly remember the last time I had a conversation with a stranger about my daughter that went that way.

And then we had another party the next night, for a classmate of Joy's, who also has an older sister who's a friend of Rose.  This one was at a gymnastics-sort of facility, with crash pads and climbing ropes and play structures and swingsets and free arcade games like air hockey and basketball.

Joy shot hoops with glee, over and over.  Look at her go!

Among the guests were classmates both past and present, who are happy to interact with Joy but also to give her the space she needs.  Then crowning delight came when we learned that the birthday girl's mom had assembled a special goody-bag just for Joy, full of stimmy-delights instead of the pencils and Blow-Pops that interest her so little.

Daily Thankgivings are hardly enough.  We are grateful beyond words to see our daughters grow and mature and move forward.

May your own celebrations of gratitude be plentiful and delightful!

Sunday, November 18, 2012

A Cartoon for Rose

For my daughter who did this:

Budgets are Moral Documents (sidewalk around the Capitol building)
 and this:

"Hoop for Justice"

comes this absolutely perfect cartoon from P.S. Mueller:

Child hula-hooping with the "O" from a chalked "Obama"

Mueller didn't know he was drawing it for Rose, but he was.  I'm going to send him this blog post and tell him so.

The only thing that would make it even more apropos would be to dress the disapproving lady in a Madison Capitol Police outfit, since chalking now seems to be on the list of criminal activities since the Walker administration crackdown on First-Amendment-protected political expression in the latter part of 2012.

(Next post will be Thanksgiving, with heaping helpings of Joy!)

Tuesday, November 6, 2012

Election Day

The presidential candidates have made their final arguments.  I've been making a final electoral argument too, on the political sites I frequent, arguing that for many people whose lives are affected by disabilities, this election hinges on Medicaid.  (Prof. Paul Krugman of the New York Times has made the Medicaid argument too, so I'm not alone in this.)

However, when I went and looked at my closing argument regarding the Walker recall here in Wisconsin this past June, I realized that what I said then still does a great job of summing up this presidential election, from a different emphasis.  Here's what I said [with a few additions in square brackets]:


Walker's Wisconsin represents a future that the wealthiest of the far-right have been coordinating and working toward in America for decades now.  I didn't understand it until the events of last February [2011] opened my eyes.  But it is real, it is dire, and it has been in process of happening for years now in this country.  The end-game is plutocracy -- government by the wealthy, for the wealthy.

That's what the ginned-up anger about taxes is about -- so the wealthiest and their corporations can continue to pay less and less toward the common good.

That's what the privatization movement is about -- private prisons, private schools, private all-sorts-of-things that have traditionally been public enterprises but are in the process of claiming more and more tax dollars to the profiteering benefit of the few.

That's what demonizing unions is about -- the last coordinated voices on behalf of workers, who have already seen wages stagnate over the past few decades, falling further and further behind the rising cost of living, while CEO pay rises into the stratosphere and the wealthiest of the wealthy hoover up the lion's share of the past decades' economic gains.

That's why money has been defined as free-speech -- for the purposes of buying electoral majorities in both the courts and the legislatures, so that the plutocratic policies can pass with unstoppable margins.  (Witness the astonishing flow of big-donor dollars, 70% from out of state, to the Walker coffers.)  [This time around in Wisconsin it's the Baldwin/Thompson US Senate campaign, which has attracted more outside spending than any other national race this cycle other than the presidency and a Senate race in Virginia.]

By the money-is-speech definition, disability issues tend to be pretty darn silent as well.  I've written before about the ALEC threats to insurance mandates, the devastating and irresponsible cap on Wisconsin's Family Care program (which the federal government subsequently forced the state to lift), the (so-far unsuccessful) attempts to privatize special education in Wisconsin.  The disability lobby is not a wealthy one.  We've got people-power -- but not money-power.

Wisconsin's issues are a microcosm of a nationwide takeover.  I've come to believe that plutocracy is THE central issue of the upcoming national elections this November.

We need to push back whenever and wherever we can.


Obama for President

Please vote.