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.

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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."

Happy Birthday to God's Hands

Rose turned seven yesterday.

That's, like, halfway to high-school. Oh, my baby!

We've been celebrating for days -- restaurant outing on Saturday, party at our house Sunday, cookies and paper crown at school yesterday morning, family presents & cards in the mail last night, probably a few cards yet to arrive.

She's such a fascinating combination of old-soul and pre-teen and sweet innocent child. Oh, and little snot, too.

The pre-teen Rose was kind of hoping for a Jonas Brothers CD or Michael Jackson.

The innocent child was just as thrilled to get an Imagination Movers CD instead (Juice Box Heroes!)

The little snot is having trouble making herself convey the proper thank-yous to relatives sending her gifts in the mail (we're working on it!) Although, I had to remind JoyDad that he developed a reputation in his own immediate family as a youth for ripping open a birthday card, declaring "No money!" and tossing it dramatically aside...

The old-soul has been delighting her Sunday School teachers.

I heard from one of her teachers awhile back, who was touched at how Rose is always excited to talk about her little sister in class when they discuss the events of the week gone by.

Last night I heard from her other teacher (who also happens to be one of Joy's baristas) about their project this past Sunday.

The lesson involved one of the healing miracles of Jesus, and the idea that we are called to be God's healing hands in the world. To expand on the idea, they created a poster together, tracing their hands and adding other illustrations as well.

As the poster-making was drawing to a close, Rose had one more idea. She began drawing a smooth, looping line connecting all of the hands on the poster and the other illustrations. "That's God's love," she said, "running between all of us."

Amen. And, happy birthday!

Who Loves Joy?

Last night at Sunday School I got to fill in as Joy's volunteer aide for part of the session. She sat in my lap on the story-rug next to the three little pre-school guys (including her former day-care buddy) who are her classmates, while the teacher read Guess How Much I Love You, a board book by Sam McBratney in which Little Nut-Brown Hare and his father talk about how very much they love each other! Then we had a conversation about "who loves you?" The kids were finding it easier to think about "who do you love?" but the teacher managed to get some thoughts out of the guys about how their parents love them, and their siblings probably do too, etc.

Then it came Joy's turn and I gave her a great big hug in my lap, while asking the guys if they could think of who might possibly love Joy so very much.

They thought for a second and then Joy's former day-care buddy blurted out, "I love Joy!"

All together now: "Awwwwwww!"

And -- the lesson toward which we were working -- God loves her too. So very much.

All the way to the moon and back, in the words of the story.

And God loves her day-care buddy, and her classmates, and her mama, and her teacher...

And you, too.

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.