Elvis Sightings

The Peking Acrobats, Redux

2012-01-28T06:52:00.000-06:00

My favorite post from my first year of blogging (all the way back in 2008!) was called Spin, Spin, Spin. It referenced an occasion when I'd gone as a chaperone with Rose's class on a field trip to see the Peking Acrobats, and one particular part of the act where a troupe of women danced while spinning multiple plates on sticks. I mused that the spinning-plates act had a great deal in common with my life!

Actually the controlled chaos of the field trip itself was something of a spinning plates act. Busloads of kindergarteners and first-graders from all over the district descended on Madison's Overture Center, vying for downtown space to disgorge their noisy wriggling kid-loads, who then all had to be organized and seated for the show. There was enough noise and waiting that I recall it was at least mildly anxiety-producing for Rose at the time, at least until the show started.

It wouldn't have been Joy's scene AT ALL.

In fact, four years later, it still isn't. Joy doesn't like chaos, or noise, or waiting. (Heck, who does?) She doesn't cotton much to sitting still, either. Sitting through a long performance in an unfamiliar venue after the chaos, noise and waiting would be a recipe for deep unhappiness, for Joy and for those around her.

When the note came home that Joy's class will have their turn to see the Peking Acrobats this year, I thought hard about how to do it. Of course we could demand that her staff figure out how to make the trip work for her, but at what cost -- and what are we trying to teach? Surely one day we'll be able to manage large public performances: maybe with accommodations, maybe without. But that's a goal to work on in increments, not by jumping into a situation where she'd be locked in to staying on site the full time because of bus transportation, in a noisy sea of hundreds of kids in a huge strange theatre. This is not, we decided, a field trip we want to inflict on Joy at this time.

We got a video instead.

Librarian that I am, I first went looking for a DVD to borrow. It turned out, though, that the only video out was too recent to be in libraries, a just-released DVD from the Peking Acrobats 2011 tour. So we bought a copy of our own.

Turns out there wasn't an online-ordering option, so I had to make a call and talk to a person. The call brought up some interesting echoes of some of the readings we'd done for the Partners in Policymaking program that I'm participating in, that started last weekend. (My next post will have more description about the program, I promise... it's off to an amazing start so far.)

Two of the readings, both by Kathie Snow of DisabilityIsNatural.com, talked about how parents and professionals tend to un-necessarily blab details about their kids'/clients' disabilities in situations and ways that we wouldn't dream of talking about people without disabilities. Here's a sample from The Problem with "Problem" (.pdf):

We don't usually share intimate details of our own lives with casual acquaintances, but we routinely expose the lives of people with disabilities for public consumption. Parents, accustomed to reviewing a child's history with every professional they come in contact with, frequently get in the hapbit of blabbing very intimate details about their children to other parents, educators, and even strangers in the grocery store! ... In general, we reveal intimate details about people with disabilities even though they have never given us their permission to do so. How dare we behave in such an arrogant and patronizing manner?

Even after this, and an additional piece called The Lost Art of Manners (.pdf), I still (gratuitously) told the guy on the phone when ordering the video -- why I was doing it. That I had a daughter with developmental disabilities whose class was going on a field trip to the Peking Acrobats show, the live show wasn't going to work for my girl, so the video was a substitute experience. It was a snap decision, quickly balancing the readings vs. a vague impulse in favor of awareness-raising.

On the one hand, I so totally didn't need to do that. If I'd had a chance to order online, I'd have typed in a bunch of keystrokes and the order would have arrived all depersonalized, no story attached at all.

On the other hand, the fellow who took the order seemed grateful to know that we valued the show enough to make an extra effort. He ended up sending us a free DVD of Jigu! Drums of China, another act represented by the same production company.

I feel pretty good at this point about the decisions we've made regarding this upcoming field trip. Others might disagree, be appalled, whatever.

Actually, the whole disability-mommy-blogging enterprise leaves lots of room for disagreement, appalled, whatever. Or mommy-blogging in general, as we spin intimate life-details into the blogosphere for the consumption of anyone who happens to wander by. In fact, as far as social media is concerned, things have changed since 2001 when Kathie wrote "We don't usually share intimate details of our own lives with casual acquaintances." Facebook and blogging and YouTube et al. have altered that equation immensely, disability or no.

It's a balance. I'll have to continue to cogitate, both about this blog and about my in-person conversations. As Joy continues to grow up, as I learn more and my thinking evolves, the balance will likely change.

Meanwhile, speaking of changing the balance -- I notice as I read how I described my life in the Spin, Spin, Spin post -- there was nothing about policy advocacy in there. No spinning plate designated for legislative contacts or Board work (or protesting, for that matter). How things can indeed change over the course of a couple of years!

Stuff We Don't Let Her Do

2012-01-23T16:22:00.000-06:00

So I was home with Joy today in between school and her afternoon therapy session, and she was happily watching a video upstairs in the living room, and I thought "Surely it wouldn't do any harm to sneak downstairs and answer a quick e-mail, right?" So I did that, and then one e-mail led to another, and then I quick peeked at Facebook, and Joy was still making happy sounds and so several minutes did go by before I trotted upstairs again to check.

And there was Joy, with her sister's new Christmas camera, which had been imprudently left on the mantel that morning.

The camera was on, rather surprisingly, since it's one of those little streamlined smaller-than-a-deck-of-cards cameras with a not-at-all obvious on/off switch.

More surprising still were the photos on the camera.

Uh-huh. Joy had been taking pictures.

Here's her foot on top of last year's Christmas fleece-boa:

Here's an artistic blurred shot out the living room window, with a bit of a reflection from the video that was still playing:

Here's a shot of the cabinet under the TV:

And here's a partial self-portrait (there were more complete ones too):

My girl took thirty-six photos before I showed up and put an end to the fun.

We didn't teach her how to do it. We've never let her so much as hold a camera before.

WHAT ELSE can she do that we've never let her try?

She Has a Dream

2012-01-16T06:17:00.002-06:00

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
--Dr. Martin Luther King, Jr.

In the middle of a conversation about school earlier this week, Rose told me about an activity that her class had done. In anticipation of the holiday in honor of Martin Luther King, Jr., they talked about King's famous "I Have a Dream" speech, and then they were assigned to come up with a dream of their own to share with the class.

Rose's dream was that her sister Joy would get a good education and go to
college.

It shouldn't take a prophetic voice to articulate what I grew up with as a basic expectation in my own family. But sometimes it does.

We've been cautious about educational expectations for Joy, as you may well have picked up if you read my reflections on the ABLE Act. It's hard to see college when your first-grader still doesn't meet most of the standard criteria on the kindergarten-readiness lists.

And yet, it's all too easy to fall into the "soft bigotry of low expectations." (That phrase has entered into the conversation so completely, I was surprised when I looked it up to see where it had come from. I see it as rather an ironic source to use on this day of all days, but there's an important truth carried in the words.)

Here's how Kathie Snow, who writes at DisabilityIsNatural.com, put it in her essay "The 'Right' to a Normal Life" (emphasis is mine):

Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? ... Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similarly-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and live a REAL LIFE as an adult? When we don't encourage and provide typical experiences (and have high expectations), we're robbing the child of the "right" -- the opportunity -- to lead a normal life.

I had just read Snow's piece as preparation for a program I'll be participating in over the next six months, Wisconsin's Partners in Policymaking, a training for self-advocates and family members who want to learn to influence public policy around issues of developmental disability. In fact, I'd read it the very morning of the day that Rose told me of the dream she'd shared.

No coincidences!

I know I'll be paying a lot more attention to our expectations for Joy in the coming months. In a couple of long-overdue baby steps, we've begun serving her meals on the same ceramic plates as the rest of the family, instead of the plastic pocket-plates she's used up to now, and transitioned her to Rose's beloved "Cooshie Booster" instead of the buckle-in booster that's been the default (she's way past big enough not to have to buckle in at mealtimes!)

There will be other changes too -- small steps can go big places.

If we're going to live in a nation where Joy will be judged, not on the elements of her disability, but as a capable human being who will spend her lifetime learning and growing and achieving, we need to lead with high expectations ourselves.

Satisfaction

2011-12-31T07:46:00.000-06:00

During the holiday-preparation whirlwind earlier this month, I also had the chance to help out a couple of students doing end-of-semester projects relating to special needs. My niece interviewed me by e-mail with a series of questions about Joy's diagnosis and development and how our family manages. Between my answers and this blog, she wrote up a paper that earned her a 100% grade, highly satisfactory!

The other interview was by phone with one of the LEND trainees we mentored this fall, who had an occupational-therapy survey for me about OT goals and progress. There was one flavor of question that came up again and again, that I struggled with answering. The question had to do with satisfaction, on a scale of 1 to 10... how satisfied are you with the goal? How satisfied are you with your child's progress?

It's not easy to assign a meaningful number to a question about satisfaction! Thinking about it later, I realized that for every one of the progress-questions, I could have truthfully answered almost anything between 1 and 10 each time.

Of course I'm not satisfied! How can I be satisfied, when Joy is so clearly behind her peers in comparison, and likely always will be? We can't let ourselves be satisfied. We're always going to have to keep striving, pushing for the next step, giving it our all to achieve... first the possible, and then the impossible!

Of course I'm satisfied! Look how far this girl has come, look what wonderful progress she's made this past year! She's working with good people who are responsive to her needs and to our participation, and the forward movement is obvious. We've had extra affirmation of that in the visit we've got going on from GrandpaJ and GrandmaJoy right now, and what they observe in Joy just since their last visit in September!

Of course there must be a balance.

Satisfied can't mean "OK, we're done, no need to work any more." In our goals for Joy, our goals for ourselves, our goals for our state and country, quitting is not an option. We can't be stagnant-satisfied.

On the other hand, there is in our culture an almost pathological urge against satisfaction, against having enough and counting our blessings. We are bombarded with messages urging us to consume, to buy, to live better by acquiring more. The country is only now waking up to the pathology of the insatiability at the tippy-top of the income ladder, the barons whose individual wealth is greater than the GDP of entire countries, who are in the process of buying United States' political system. How many billions are enough, and at what cost to how many of the little people down at the bottom of the heap?

How can we learn to balance a truly grateful satisfaction with an appropriate moving-forward?

I'm reminded of the Jewish Passover song Dayenu, which tells of God's great gifts to the children of Israel: bringing the people out of slavery in Egypt, the miracles of being led and fed in the desert, the gifts of the Sabbath and the Torah. As each gift is listed, the chorus affirms "Dayenu" which translates as "it would have been enough for us" -- or, as in the version I first heard, "it would have satisfied us."

And yet, the scriptures tell us one story after another of the exodus in which the people were not satisfied and complained to Moses, complained to God. It would have been better if we had stayed in Egypt as slaves rather than come out here into the desert -- at least there we had enough to eat!

Satisfaction is a choice, an attitude, a commitment, whether we remind ourselves in song or otherwise.

I blogged about it only in passing, but last year instead of traditional New Year's resolutions, I chose three words to shape the year: active, tidy, relax. They rather morphed into "active, organize, relax" as events in Wisconsin exploded in February, and I never did manage the "relax" one very well. But active and organize took on new dimensions!

This year, I'm looking at these three:
balance
forward
kindness

Balance in the right kind of satisfaction; balance in schedule; balance in mindset.

Forward for Wisconsin; forward in goals for myself and goals for Joy; forward rather than stagnation.

Kindness in everything -- to myself, to those who disagree with me, to everyone I encounter.

What three words would make a satisfying 2012 for you?

Songs of the Season, Part 3

2011-12-24T06:30:00.000-06:00

Christmas Eve, and the final installment in this Songs of the Season series.

I wasn't the only one to set up an annual holiday letter with a musical lead-in this year. GrandpaJ and GrandmaJoy sent an entire letter premised on the blessing of music in their lives in 2011. Their letter began with a story that involved their granddaughter.

Both grandparents volunteer regularly to visit inmates at a correctional facility. GrandpaJ has been matched with one fellow in particular for quite a few years now, developing a cautious but meaningful relationship over time. In early December, this man sang a solo at the annual prison Christmas banquet, a "hearty rendition" (according to GrandpaJ) of O Holy Night.

He dedicated it to his friend's granddaughter Joy, and asked everyone to pray for her.

A dining hall full of prisoners in Kansas, praying for my daughter!

How marvellously unexpected, topsy-turvy, upside-down.

And all in celebration of the topsy-turvy arrival of God-With-Us, a baby born in an out-building among the farm-animals, while a dazzling host of angels brings the astonishing news to ordinary shepherd-folk in the fields.

Fall on your knees, O hear the angel voices!

Songs of the Season, Part 2

2011-12-22T06:25:00.000-06:00

JoyDad and I had a remarkable time at Monday's Solidarity Singalong! Hundreds of protesters filled the Capitol rotunda on the ground floor and balconies, singing recall-themed versions of Christmas tunes, in cheerful defiance of our governor's latest attempt to quash dissent. A resounding win for free-speech!

Photo credit madtowntj of Daily Kos

The re-purposed tunes of the Solidarity Singalong are at least somewhat analogous to a little ditty to the tune "The Farmer in the Dell" that we've
been experiencing a lot lately:

The A says "aaa", the A says "aaa"
Every letter makes a sound,
The A says "aaa!"

The song is from a series of products by a company called Leapfrog. (Link goes to a YouTube video -- I'd've embedded it, but it looks like they've disabled that option for this one.)

The "A says 'aaa'" phonics-washing of Joy began around the time of her birthday at the start of the summer, when she got a Leapfrog Fridge-Phonics toy from Auntie S as a present. The toy has a magnetic back, so you can stick it on the fridge -- or in our case, the fireplace.

You choose a letter to put in the slot, and then the toy sings the song for that letter. Or, push the little orange notes above the letter and it sings the familiar ABC song.

Some months after we got the toy, we discovered that the Leapfrog Talking Letter Factory DVD, which we'd gotten for Rose when she was just beginning her love affair with letters and words, had become acceptable to Joy as well. The cartoon story on the DVD involves a tour of a factory that makes letters, and sings through their "every letter makes a sound" songs one by one, with funny little additional mnemonics (for example, the E cups its hand to one ear and says "eh?" as if it couldn't hear you!) Joy particularly loves the opening menu-sequence, something she apparently shares with quite a few kids on the spectrum.

Then still more recently, just at Thanksgiving, we pulled out yet another saved Leapfrog artifact from Rose's toddlerhood -- her "My First LeapPad." Kids interact with this clever toy by touching a series of printed pictures with an attached electronic pen. You can buy a variety of spiral-bound books, each coming with its own game-cartridge. To tell the toy what page you're on in any given book, you have to touch the green "GO" circle on that page with the pen in order to get the correct noises that go with that page. It's definitely a couple of steps beyond the baby-toys that have been the staple of Joy's repertoire.

And guess what? We already had the "I Know My ABCs" book and cartridge, built around the "A says aaa!" song!

I was amazed how fast Joy figured out the sequence of turning on the toy, turning the pages of the book, and tapping the "GO" cicle. The latter is a particular accomplishment because the "GO" circle is at a different location on the perimeter of each page, in order for the toy to differentiate which page's fun to serve up. I love to watch Joy scan all the way around the edge to find the "GO"!

After all this musical phonics-washing, Joy now can fill in the blanks when we sing her a letter:

JoyMama: "The B says..."
Joy: "buh!"

And look what else she's been doing lately, another Rose hand-me-down:

One more Songs of the Season post yet to come... stay tuned!

Songs of the Season, Part 1

2011-12-19T09:35:00.000-06:00

As the introduction to our annual Christmas newsletter this year pointed out, "the local oldies station has switched to 'all Christmas music, all the time.'" Christmas, more than any other holiday, comes with its own musical soundtrack.

The JoyFamily appreciates the holiday soundtrack -- JoyMama in particular was simply delighted with the Messiah singalong at church on Sunday! (Rose, in contrast, left the sanctuary at the first chorus, claiming that the singing and instruments were painfully loud.)

We have our own songs going on this season too.

I've written before about Joy's bedtime routine, that involves filling in the blanks for Rock-A-Bye Joy and Twinkle, Twinkle, with Joy filling in the words. In recent weeks, these songs have gone to a whole new level. They've become an interactive people-play, where Joy decides what will be rocked or twinkled and when it will happen.

It looks something like this: she'll bring me her stuffed penguin and cuddle up to me with penguin in her arms. Then she'll rock slightly back and forth, saying something like "WOH-woh." Which is my cue to sing:

Rock-a-bye PENGUIN, on the tree top,
When the wind blows...

... and Joy fills in some "peh-peh" word so I can continue

PENGUIN will rock!

The funnier the item, the better the Joy-giggles. One of my favorites has been the plastic tomato slice:

Twinkle, twinkle, little TOMATO!!

But wait, there's more! JoyDad and Joy then added a variation where Joy points to her own body-parts, with a one-finger point even, to direct him into verses such as:

Rock-a-bye KNEE, on the tree top,
When the wind blows, BELLY-BUTTON will rock!

The most recent variation has to do with a home-made board book dating back to Joy's days in daycare and early-childhood ed. The book has photos of people close to Joy, plus useful shots representing daycare, home, mealtime booster-chair, potty, etc. When Joy brings this book with a cuddle and a "WOH-woh," and starts flipping to the desired pages, we get something like:

Rock-a-bye GRANDMA, on the tree top,
When the wind blows, POTTY will rock!

I've got a few more musical offerings to share before Christmas rolls around next week. Meanwhile, though, I'm off to the Solidarity Sing-Along at the Capitol, something I've written about here and elsewhere. Today's singalong of holiday-themed protest songs will end up being a test of a set of new restrictive rules designed to quash protest, this regular protest in particular. Might be something of a showdown today, though it sounds as if the administration isn't going to try any mass arrests. I'm all dressed up respectable-like just on the off chance, though!

Keep singing, and I'll report more Joy-family song-related goodies in days to come...

The Thinking Person's Guide to Autism

2011-12-18T07:21:00.001-06:00

You've read the blog, now buy the book...

An essay of mine (writing as JoyMama) has been included in the print/Kindle version of The Thinking Person's Guide to Autism, now available at Amazon.com.

Here's what Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science, had to say about the book:

"Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person's Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them."

It's a powerful list of contributors, self-advocates and family members and professionals, including blogfriends of mine Barbara/TherExtras, Jess at Diary of Mom, Kristina Chew, and Rachel Cohen-Rottenburg.

In time for the holidays, if you hurry... :-)

Community Contributions

2011-12-14T06:17:00.000-06:00

I dropped Joy off at school yesterday morning in person, as I always do, walking her right up to the doors where the buses for kids with special needs stop. Joy pulls the door open herself... and yesterday she managed to get all the way inside without further help, a new inchstone!

The aide who meets Joy with an animated hug and peek-a-boo each morning hadn't made it all the way down the hall yet, so Joy and I hung out for a bit. As we waited, one of the janitors, a guy who's been at the school at least since Rose was in kindergarten 5 years go, came up behind us. I greeted him by name, he said hi and then came over to Joy. "Hi, Joy!" he said.

"HA!" answered Joy, with the charming little wave of greeting she's developed.

The janitor came close and hunkered down. "High-five, Joy?" he offered and put up his hand -- and she gave it a cheerful slap.

I was delighted that this guy knew my daughter, and took the time to greet and welcome her! As the aide stepped up a minute later, I shared my delight with her. She said that they've been working on the relationship; that he has a regular trash-collection route that takes him past Joy's table at the lunch hour, which is where the regular greeting has been established.

Even beyond the school day relationships with the children, this guy goes above and beyond to be part of the community at off-hours events as well. For example, he comes out for the school's annual fun-run and helps out grilling the bratwurst, just as much a part of the community as the teacher who traditionally leads the "silly warm-up exercises" at the event.

So when I hear things like a certain presidential candidate's recommendation "get rid of the unionized janitors... and pay local students to take care of the school" -- well, here's one unionized janitor that I'm glad to have in our lives.

High-fives for the janitors and their contributions to our school communities!

ABLE Accounts and "A Bad Place"

2011-12-01T05:38:00.001-06:00

UPDATE -- This post from 2009 had somehow disappeared from the web into "draft" status! I'm glad to retrieve it, because it's time for an update. The Achieving a Better Life Experience (ABLE) Act failed to pass in its 2009 incarnation, but was re-introduced in November as the ABLE Act of 2011. The link is to a widget from Autism Speaks that will help you to contact your federal legislators and ask them to sign on as co-sponsors. Please read the piece below -- it may be familiar, if you're a long-time reader of this blog! -- and then please click and contact. Thanks so much!

= = = = = = = = =

"You're in a bad place."

That's how the lawyer summarized our situation, with regards to saving for Joy's future needs.

Not long after the births of Rose and Joy, we started saving for their future higher education needs, with our state's 529 educational savings plan, a nice tax-exempt way to be saving and planning ahead. We have a relative who has done the same for them in another state, too.

Rose is, pretty obviously, a very good bet for higher education eventually, little human dictionary and all.

With Joy, the educational trajectory has been so confusing. We really have no idea what will be going on with her by the time she finishes school (or the school system finishes with her). Heck, she's only four [update: now she's seven, and we still have no idea!]

But as she gets closer to entering the school system and yet keeps regressing away her various gains, we started to wonder about the wisdom of the 529 accounts for her. The rules of the 529 are clear: you can only use it for higher education expenses. If you take it out for anything else: big honkin' tax hit.

We surely don't want to sell Joy short, but it seems pretty clear that she's going to have some needs beyond the norm as she matures. Those needs may have to do with higher education, but they may not! We don't want our savings for her to be locked into something that's not flexible enough to meet her needs.

That's the situation that sent us to the attorney, to ask about the potential of a special needs trust.

That's the situation he shook his head at, and called "a bad place."

The thing is, a special needs trust isn't designed to be a place for you and other relatives to sock money away incrementally, like the 529 for higher education. The special needs trust is a vehicle where you move a big chunk of change for the later support of a disabled person, and it's highly hemmed around with restrictions to keep unscrupulous folks from using it as a tax shelter when disability isn't really the issue. You need to be very sure you've got an ongoing disability situation before you start down the special needs trust road, and then it's definitely lawyer-business (i.e. attorney's fees) to set up, unlike the 529 that you can do on your own.

But the 529 isn't a great bet for her either, given the uncertainty of her situation. The attorney didn't know what to advise us, except that there weren't any really good options for us.

We were told that federal legislation had been introduced in the past, to create a vehicle similar to the 529 but for expenses related to disability. But it had never managed to go anywhere.

Except that there's been a big election between then and now! [Update: hmm, the 2008 elections didn't manage to make the difference. Maybe there will be some traction as elected officials campaign for 2012?]

And... the legislation has been introduced again, both in the House and Senate, on February 26, 2009. It's called The ABLE Accounts Act of 2009 (ABLE stands for Achieving a Better Life Experience), and the bill numbers are H.R. 1205 and S. 493. [Update: the 2011 version bill numbers, introduced Nov. 15, 2011, are H.R. 3423 and S. 1872]

Here's a summary of the legislation (updated link & summary for 2011):

The ABLE Act -- introduced with bi-partisan support in the House (HR.3423) by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate (S.1872) by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC)-- would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.

And what could it be spent on? Glad you asked...

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.

Here is a link to the text of the bill itself (Senate version for 2011, in pdf). One element that I was glad to see: it looks as if one would be allowed to transfer money from an educational 529 into an ABLE account without the tax hit.

[In 2009] the bill was introduced in the House by Ander Crenshaw (R-FL), with co-sponsors Congressmen Patrick Kennedy (D-RI), Cathy McMorris Rodgers (R-WA), and Kendrick Meek (D-FL). In the Senate, it was introduced by Senator Robert Casey (D-PA), Senator Orrin Hatch (R-UT), and Senator Christopher Dodd (D-CT), and co-sponsored by Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS). Update: in 2011, it was sponsored in the Senate by Robert Casey, Jr (D-PA) and Richard Burr (R-NC); in the house by Ander Crenshaw (FL), Chris Van Hollen (D-MD), and Cathy McMorris Rogers (R-WA). Bipartisanship, can you even believe it?!

Please take a moment to drop a note or call to your senators & representative urging them to support/co-sponsor this bill. There's a handy page for generating constituent support letters over at Autism Speaks, or you can look up your elected officials' contact information here and contact them directly.

If you can take a few minutes to do this, that would make us so happy! And you'll have earned the right to come back and brag about in the comments about how you're helping us get to a better place!

Do let me know if you have any questions, either in the comments or via e-mail.

Rise of the Planet of the Apes

2011-11-28T13:28:00.000-06:00

The brief review sounded like a good bet for our 18th anniversary dinner-and-a-movie celebration -- plus it was at the cheap-theatre, which also sounded good after the spendy restaurant we had in mind!

Rise of the Planet of the Apes
In this funny, tense and fascinating film, a researcher (James Franco) raises a young chimpanzee uniquely affected by his experimental brain-repairing drug. Here's a movie where you can almost forget you're watching special effects, and simply fall into watching a great story.

The dinner was savory, leisurely, lovely. The movie -- was beyond tense for me. After the first half hour I was knotted up with such a strong emotional reaction that I nudged JoyDad and told him I wanted to leave. He was all in favor.

So here's the deal with the Rise of the Planet of the Apes, and be warned, this is spoiler-filled, at least about the first part of the film!

The film is a prequel to the famous Planet of the Apes, a post-apocalyptic fantasy in which apes have become ascendant and humans have become slaves. Rise of the Planet of the Apes creates a contemporary groundwork for the apes' ascendancy. The "experimental brain-repairing drug" alluded to in the review is to be a block-buster cure for Alzheimers, and potentially a whole raft of other conditions. The researcher who raises the young chimp is also caring for his own father at home -- his father who has Alzheimers, and is simultaneously deeply impaired yet still physically strong, such that he'll need institutional care very soon (there's no evidence of the family receiving any services that would help him remain at home, by the way.)

The researcher treats his father illicitly with the super-drug, which works amazingly for a while. The young chimp Caesar, meanwhile, is the offspring of a mother who received the super-drug in the lab, and the son ends up with beyond-human intelligence, in (of course) a powerful chimp body, able to communicate via sign-language. The researcher and his father become dad & grandpa figures to Caesar, who eventually falls afoul of the law while attempting to defend his "grandpa" in an Alzheimers-related altercation with a neighbor. It was at the point soon after, when Caesar is locked away for the good of society, that I felt the need to walk out.

The institutionalization of poor Caesar is a devastating betrayal by society, enabled by his researcher-father, though the researcher does try to go through channels and get it reversed. It was just too much for me to watch Caesar, a more sympathetic character than the humans around him but with no place in human society due to his chimpanzee form, comprehend what was happening to him (and the "institution" was far worse than the researcher-father realized.)

Perhaps you can see where my reaction might have come from. Institutionalization for people with disabilities is not just part of our history -- we're living in a state here that has frozen enrollment for programs that help frail elders and people with disabilities live in their communities... except that if there's a crisis, they'll fund emergency institutional care.

On top of that, the film was raising issues of genetic meddling to "cure" disabling brain conditions -- there was one scene where the researcher was pitching his drug for approval for testing on humans, and in his presentation the word "autism" floated across the screen among the conditions that were going to be... fixed. There have been other fictional explorations of this kind of thing: Flowers for Algernon by Daniel Keyes, and The Speed of Dark by Elizabeth Moon (an autism-specific tale).

Issues, our society has issues. If you want to see them explored in a tense action drama, you might want to see Rise of the Planet of the Apes -- it tells an effective story and the CGI-animation is pretty impressive. But if you've got a personal stake in disability issues, don't be expecting to fall happily into to a funny story. There's a whole lot more at stake than that.

Come, Ye Thankful People

2011-11-24T10:54:00.000-06:00

Come, ye thankful people, come, raise the song of harvest home;
All is safely gathered in, ere the winter storms begin.
God our Maker doth provide for our wants to be supplied;
Come to God’s own temple, come, raise the song of harvest home.

Happy Thanksgiving from the JoyFamily - hold your loved ones close!

Recall Walker!

2011-11-21T20:28:00.006-06:00

You won't hear about it in the national news, because they didn't care to cover it. Not a single national news truck was there; the only national news figure was Ed Schultz, and he was there to march with the firefighters (though I'm sure he'll report on it in his Monday show.)

Besides, there was no riot. In fact, there wasn't a single arrest.

Somewhere between 25,000 and 40,000 protesters converged on downtown Madison Saturday to fill the Capitol Square -- and the Capitol Building -- with a determined reprise of our gatherings this past February.

The occasion was this week's launch of the signature-gathering drive to recall Governor Scott Walker, who bulldozed into office this past January with a secret agenda, heavily-funded by ultra-wealthy out-of-state corporate string-pullers.

That secret agenda has since marched forward in lock step with the American Legislative Exchange Council (ALEC), that secretive organization where corporate representatives and Republican state legislators get together to write legislation to the benefit of the corporations. Then the legislators take the agreed-upon texts back to their states and we get waves of cookie-cutter efforts at:

privatization of activities funded by tax dollars, such as education and health care -- corporate profiteers want those lovely other-people's-tax-dollars to redound to their own benefit, while paying as little as possible in taxes themselves
consolidation of political power -- union-busting is a two-fer, as they get workers disempowered both on the job and in the political sphere. But power-grab is also at the heart of the Voter ID laws, which seek to disenfranchise groups that tend to vote Democratic: African-Americans, the poor, people with disabilities.
rolling back environmental protections -- after all, what corporation wants to pay for that sort of stuff?
tax cuts for the wealthy and -- of course -- corporations.

ALEC's secret database of agreed-upon cookie-cutter legislation was laid bare this summer by the Madison-based Center for Media and Democracy, at the ALEC Exposed web site. The legislation templates are no longer secret -- it's no use to deny the extent to which this legislative assault on the average American (the 99%, if you well) is coming directly from the corporate string-pullers via ALEC.

I've had rather a dry spell of political writing since the summer senatorial recalls here in Wisconsin. That long, exhausting effort did not manage to change the majority in the Wisconsin State Senate, though we flipped two seats such that the Republican majority is a single vote, 17-16. The slightly-swingy nature of that single vote majority has at least curbed a few of the worst proposed excesses, but isn't enough protection against the overall Walker juggernaut.

Since the summer recalls, the Medicaid slashing that I wrote so much about in February has rolled forward toward predictable devastation. The Wisconsin budget bill set the terms -- over $500 million in cuts, to be specified later, and the the full legislature wouldn't vote on the specifics of the cuts even if they went against current law. Those cuts have now been specified and voted in by the Joint Finance Committee, along party lines of course. The proposal agreed to by the JFC is projected to result in nearly 65,000 people losing Medicaid coverage, due to things like changed eligibility or income limits, or higher premiums, or if their employer offers insurance (even if it's expensive and crappy and they can't afford it -- I'm looking at YOU, WalMart.) To go into effect, though, the plan needs to get approved for an exemption/waiver by the feds, because it falls afoul of some current federal requirements. If that approval is not forthcoming by December 31 -- an entirely arbitrary, self-imposed deadline -- they'll implement instead a plan that kicks off a different 53,000 people.

It didn't have to be this way. There was an alternate state budget proposal, called the Wisconsin Values Budget, that called for a much narrower Medicaid cut. And as an alternative to the proposal passed by the JFC, a Madison organization called ABC for Health proposed an alternative called the Pathway Plan for 2012, seeking a sustainable solution that actually expands the health-care safety net instead of devastating it.

Contrary to my initial personal fears, Joy's current services have remained largely unscathed. Her funding through the Children's Long-Term Support waiver has been frozen at current spending levels but not reduced; her Katie Beckett MA funds that cover diapers and co-pays were not cut either. The two-year freeze on enrolling new participants in the Family Care long-term care program may have an impact on her future, but whatever is up with that reality when she needs it is a long ways down the road for her.

But that doesn't mean that I had no reason to take Joy and testify at a Medicaid hearing at the Capitol the other Thursday. (The Joint Finance Committee declined to hold a public hearing, so the only option was to testify before sympathetic Democrats who aren't "in power" right now.) On the one hand, I didn't have personal testimony of impending healthcare disaster. On the other, "then they came for me, and there was no one left to speak for me..." In addition, I could bear witness as a member of my congregation, who have signed on as members of the Save BadgerCare Coalition (yes, we can do that -- it's issue-based, not party- or candidate-affiliated.) So I spoke my opposition, with my daughter on my lap.

And on Saturday, our whole family took to the streets with tens of thousands of our closest friends!

This was Joy's biggest rally so far. It wasn't until after the largest of the protests in February that we figured out a routine to get Joy downtown with her jogging stroller to protest and lobby. Now we're old pros, and so was she. We drove from our house right up to the edge of the rally within minutes, finding free parking just a couple of blocks off the Square! Then into the jogging stroller with Joy, and off we went, well prepared with stimmy-toys and snacks and Kleenex, along with food-drive donations ("Can" Walker!) and protest signs and camera. And warm clothes, of course. Would it be a Wisconsin protest without coat and mittens?

I had already signed the recall papers on November 15 (Day 1) for both Walker and Lt. Gov. Kleefisch -- if we don't recall them both, there's the possibility that Walker could resign before the election and Kleefisch would move up. Can't let that happen! However, JoyDad hadn't signed yet, and was looking forward to the opportunity. Lo and behold, there were signature gatherers right at the corner of the Square, so we could take care of that crucial business immediately.

Then it was off to circle the Square with the marchers, and revel in the energy and creativity. For example, we made sure to be on the State Street corner at 12:30 to catch the flashmob dance to "Forget You" (I see you causin' lots of trouble in the state I love, and I'm like, FORGET YOU!)

Then there were the signs, from the familiar...

to the artistic ...

... to the potty-humor!

My sign had two sides. I've gotten so experienced at hand-lettering, I don't even need to draft in pencil anymore!

And then there was Rose's sign:

Joy didn't carry a sign, but she did carry the whole event off with class. The entire hour and a half we were out there, she rode uncomplainingly, playing with Mardi Gras beads or pine needles and observing all the ruckus. The few times she tried to reach for someone's long hair or beaded fringe, folks were gracious.

The highlight of the event for Joy was encountering one of her favorite school staffers, along with two of last year's staff. You should have seen her face light up! And then she wanted to go right into playing some of their favorite games. Just a delight to see Joy welcome someone out of context and bring the context right along for the ride.

Overall, it was a remarkably satisfying event. And when we got home, we learned there'd been an announcement at the rally: from Tuesday to Friday, 105,000 recall signatures had been turned in, out of the 540-some thousand needed (though we'll be collecting 700,000 or more to have a cushion.) That's in just four days of the 60-day window, and that's without a weekend!

I think we're going to make this recall happen, and I can hardly wait. Recall Walker!

Lucky

2011-11-14T09:45:00.000-06:00

My older daughter Rose and I watched the movie Temple Grandin, starring Claire Danes as Temple, on DVD the other night.

Temple Grandin may be the best-known person with autism in the world. She's a professor of animal science, a wildly-successful designer of livestock handling equipment, and also an author & lecturer on autism. I had the privilege of hearing her speak in the spring of 2010 at the Autism Society of Wisconsin annual conference. (And I got to meet her and get her autograph!)

Rose was fascinated. Very impressed to see Temple's signature on my copy of The Way I See It, inscribed "To [JoyMama]." Amazed at how Claire Danes, whom she'd seen as Beth in the movie Little Women, could become this completely different person. (Temple was amazed too -- as she said at the conference talk, "Claire Danes became me in a way that was really weird!")

Joy wandered in and out of the room as we watched, but Rose was engaged with the movie all the way.

She wondered whether Joy sees the world in any of the picture-flashes that portrayed Temple's thinking, or the superimposed architectural designs.

In the scene where Temple's mother is told of the autism diagnosis and advised to put her daughter in an institution, Rose asked questions and then made the connection with the Where's Molly? story we saw on TV a year ago.

She was distressed by the way Temple's classmates treated her, and shared that she'd seen kids make fun of Joy at school a couple of times. But she allowed as how she gets teased from time to time herself. I pointed out that when Temple was in school, and even when I was in school, kids with developmental disabilities simply didn't get to go to the same schools that typically-developing kids attended, if they even got to go to school at all.

Rose thought about that. "It's so lucky..." she said...
and I expected her to go on to say how lucky Joy is that she gets to go to school with everyone else...

"...for Joy's class that they get to know her and have her in school with them!"

Princess Adventures

2011-11-01T06:33:00.000-05:00

I started out as one of those moms who was going to take a stand against the whole princess-i-fication of little girlhood. No Disney-princess videos or clothing or toys or other assorted stuff for my money, thanks! We tried to hold off on the Barbie thing too. But the culture is persistent. There are ads and Happy Meal toys and sweet relatives who give Christmas gifts, and Rose's first Barbie that came when she broke her arm (by way of an emergency-room staffer)! So the princesses have encroached, and I kinda learned to live & let live.

And this year, the princesses saved my bacon for Halloween.

For some reason, Halloween costume ideas didn't flow freely this year. We've had some really cool themed-costumes where we dressed the girls in a coordinated way, like last year's pirate wench (Rose) and hook (Joy). Last year's Halloween post took a trip down costume memory lane, as I perused old photos with my college classmate whose daughter Elizabeth is our regular trick-or-treat companion.

We'd sort of settled on costumes whereby Rose would be a soccer player -- just wearing her soccer gear -- and Joy would sport a soccer ball on her sweatshirt. But then Elizabeth's mom made an offer we couldn't refuse. She just happened to have princess dresses from two of Elizabeth's previous Halloweens, a magnificent home-made Snow White dress and an elegant dress from a couple of years later. Would these possibly fit our girls?

Oh yes, and perfectly.

The Snow White dress was comfy cotton, just the thing for a kiddo who gets distracted by too many furbelows. Though at first glance Joy doesn't look just thrilled in the above pic, she's actually mugging for the camera here. That grimace is her current "cheese" smile! (I love it that my daughter should have figured out a "cheese" smile!)

Our trick-or-treat group was a large one, between the Joy-family, Elizabeth and her mom, J-Cat and his sister and parents, and two of this year's LEND trainees who are doing a family-mentoring experience with us to get a glimpse into what it means for our family that Joy is who she is. The noisy crowd didn't seem to bother Joy, though. She was remarkably chipper and cooperative as we traipsed up one side of the dark street and down the other, making a fine effort to convey candy from the proffered baskets into her plastic pumpkin, and ringing the doorbell with minimal prompting when it was her turn. Of course it took a parent keeping a solid hold on her hand and guiding her with the group every step, but she didn't protest a bit.

In fact, she didn't even protest when the clock struck midnight, and the prince pursued her down the flight of marble stairs leading from the palace, and her glass slipper fell from her delicate foot...

You may think I've got the wrong fairy tale here, but bear with me.

As JoyDad shepherded our princess toward the second-to-last house we were going to take her to, he suddenly looked down and noticed that Joy was missing a shoe. It was hard to catch in the darkness, because she was wearing dark pants under her dress, and dark socks, and the little velcro tennies were a dark brown. But somewhere along the line she had stepped out of a shoe, and trotted on entirely uncomplainingly!

You can perhaps imagine how it looked then, as our large party suddenly began to retrace the route. It was only up and down one block, but we didn't know how long the shoe had been gone, we didn't have flashlights (duh), and there were nice brown autumn leaves all over the place. We ended up back at home with a single-shoe princess, and even two more search party forays with flashlight did not find the elusive footwear.

Well, Joy ended up playing back indoors, cheerful as could be, while I chatted a while further with the LEND trainees. Rose and company went on trick-or-treating -- she eventually brought home a HUGE stash of candy, apparently having told at each house the sad story of how her sister-princess had lost a shoe and had to stop trick-or-treating and so could I please have extra candy for my sister?

Then after the trainees had gone, and the house was still, the doorbell rang once more. It was the prince! And the royal grandma! Well, OK, it was one neighbor each from the two houses in between which we had discovered that the slipper had been cast. The two of them had gone out in search of that elusive little shoe, and had found it for us!

And it fit perfectly, and we all lived happily ever after.

The Fruits of Inclusion

2011-10-24T06:19:00.000-05:00

"Is that your daughter?" asked the girl in the swing next to Joy's. She and her friend, about Rose's age both, had been looking over at Joy, trying to figure out what was up.

"Yes, she is," I said from my seat on a nearby low wall, where I was watching Joy lean from the swing and revel in the gravel and shredded tires, all full of happy-noise.

"She's pretty!" was the next offering.

"Thank you," I responded, with some surprise. "Her name is Joy."

"Hi, Joy!"

I'd hoped Joy might reply, since she's done well with greetings recently, but she was too wrapped up in the delights of gravel.

"What is she saying?"

"Right now, I think she's saying how much she likes what she's doing..."

"Does she say any words?"

"Sometimes, but sometimes not."

Then the other girl spoke up, somewhat hesitantly.

"Does she have a... disorder?"

Deep breath. "Yes, she does have disabilities. Do you have any friends with disabilities in your class at school?"

Both girls nodded vigorously. "Yes, we do. But we treat them just like normal."

And the next bit of conversation was just like normal -- and then they said, "Bye, Joy" and ran off.

And as they left, Joy said "buh-bye" with a little wave.

It Hurts Me Too

2011-10-07T06:27:00.001-05:00

When things go wrong,
go wrong with you
it hurts me too.
-- Tampa Red, and many other blues artists since

For many years, Joy's been slow to show us if she's feeling pain. I wrote about it at the end of 2008 in terms of high pain-tolerance. She used to pick up a whole handful of splinters without batting an eye, and back in '08 would let me dig them back out with minimal reaction. (By the time of the "handful of splinters" post in 2010, she was starting to object to such operations somewhat, though still not reacting obviously when the splinters went in.)

Things are changing on the pain-reactions front, though. Now when Joy gets a splinter, she grabs for me to show me right away. She cries more readily at pain, does a much better job of indicating where the "owie" is, and wants an adult to rub it / kiss it / make it better.

There's been a change in how Joy reacts to Rose's pain, as well.

Time was, Rose would burst out into tears, and Joy would have "inappropriate" reactions that would be difficult to process with everyone involved. Joy might try to swat Rose, or burst out laughing, neither of which were reactions that felt particularly supportive to her sister!

But earlier this week, we had three occasions in short succession on which Rose began to weep, and Joy responded by crying real tears as well.

Rachel Cohen-Rottenburg has been doing some wonderful work about empathy, founding the site Autism and Empathy and fighting the good fight against those who maintain that a lack of empathy is inherently a part of autism. I haven't been able to give the site the attention it deserves, nor the level of thoughtful comment, but I've been following along as I can. And I had to think of Rachel's work in context of what I'm seeing in these interactions between Rose and Joy.

"It hurts me too."

The sad occasion this week which caused Rose to weep so frequently was the passing of our bunny Ellie. Ellie has been our final remaining house-bunny since the death of her partner Phoebert a year ago January. Ellie was only a year or two younger than Phoebert, definitely an elderly bunny, and we had decided against getting her a new companion because we were ready to try a pet-free home. (Claiming back the space, the time spent on weekly box-and-enclosure cleaning, the food-and-litter expenses, etc.)

We actually thought we were going to lose Ellie 6 weeks ago, when she stopped eating her bunny-chow... but she was still willing to eat greens, and so we went with a hospice-style approach where we gave her all the greens she liked as long as it made her happy in her final days... and she perked back up! But she was definitely in decline, and things went so fast this past Sunday it became clear that this was really it. So Ellie and I made one final trip to the vet on Monday.

Rose & Joy both got to pet Ellie's remains. We had a burial in the back yard.

I'm less worried this time around about what Joy does or doesn't understand. She probably "gets" quite a lot more than we're tempted to think she does. I've been more concerned about Rose, who has been reading The Giver by Lois Lowry in school -- it's a dystopian novel about a would-be perfect society, in which one of the mechanisms for keeping things perfect is "releasing" imperfect infants and the infirm elderly by means of lethal injection. I was steeling myself for the conversation that connected Ellie's final injection to The Giver, and maybe even to Joy?! But I don't think the connection was made... which is something of a relief. Rose is growing up fast, but maybe it doesn't need to be that fast.

JoyDad and I have had rabbits in our home since 1994. Ellie's departure is the end of an era.

Good-bye, Ellie-bun. We miss you.

Ellie
2000(?)-2011

Wide Open Spaces

2011-09-26T13:12:00.021-05:00

The pace of my blogging continues to gravitate toward a more widely-spaced output. The to-do list feels long. I keep hoping that I'll move into a good rhythm with the school year -- maybe I just haven't gotten there yet.

Joy got a brand-new wide-open space herself a week ago at school... she's now missing a front-tooth! It's been quite a while since the bottom two came out, almost a year now, so I guess we're due. This one came home a day later than it actually came out. In fact, the news came a day late too! The tooth had disappeared right at the end of a rougher-than-normal day, after Joy's school staff had already filled out her daily log, and it got missed in the brief verbal "how was her day" as well. Her SEA had not been back in the building a minute before I noticed that gaping new hole!

I figured she had maybe swallowed the tooth, and was giving her staff enough of a run for their money that it had maybe gone unnoticed, seeing as how she wouldn't have made a fuss about it... but Tuesday morning we got a belated tooth-loss report as soon as we came in the school door, words-tumbling-over-one-another apologetic! And then by the time I picked her up Tuesday afternoon, the missing tooth had been found as well, and was stowed in a little plastic treasure chest in her backpack.

Doesn't that look like a first-grade smile, though?

The other wide-open space we've been dealing with lately is one that dates back to the beginning of the summer, when we starting having another bout of hair-pulling-out. Over the course of a week or two, Joy managed to create a noticeable totally-bald patch along her nevus-removal scar, even after I gave her a short haircut to make the hair harder to grab. This time I opted not to go the full buzz-cut route, planning to even things up through future haircuts.

But before we got as far as haircutting, another space-within-a-space opened up. I think it might have started as a mosquito bite right on the scalp-scar, that Joy scratched open the way she generally does with mosquito bites. Long after the summer bites on her legs healed, the one on her head was still open. For a while she semeed to be scratching it for stimmy-delight, then it turned into a self-injury frustration lash-out thing. (What, I can't get through that forbidden door? Well, SCRATCH MY SCAR!)

Scratch after scratch, the start of the school year was approaching and the wound was getting bigger instead of smaller. Complicating the matter was our long-standing experience that band-aids only draw further attention to any boo-boo, by encouraging picking. So we knew that putting on a band-aid would just make things worse.

Except -- the other thing that we might have remembered is that Joy's mixer-board switches do tend to flip between settings, from time to time. After a few days of school and a Labor Day weekend full of scab-scratches, I finally decided that trying a band-aid couldn't be any worse.

She left it on for a couple of days. Long enough to begin a cycle of some healing... it's been three steps forward, two steps back since then, including a resumption of unwillingness to wear the band-aid, but we've been making progress. Perhaps by the time the hair grows back, the wide-open space will have closed again for good!

Taking Action on CARA

2011-09-15T06:13:00.003-05:00

UPDATE 9/15: I just got the following e-mail from Autism Votes:

We have learned that House Majority Leader Cantor has affirmed his pledge not to allow the federal commitment for autism to expire by supporting the Combating Autism Reauthorization Act (CARA) of 2011 and allowing the bill to go to the House floor for a vote early next week. Thank you so much for all your hard work the last few days in sending him emails and making phone calls.

==============

I've got several blogposts backed up in a jumble in my mind, but I'm going to hit an urgent advocacy-alert one first.

The Combating Autism Reauthorization Act of 2011 (CARA) needs our help to pass by September 30th.

CARA is a 3-year re-authorization of federal funding that's been in place since 2006, which was first passed during the GW Bush administration. The funding focuses on expanding research and coordination through the National Institutes of Health, increasing awareness and surveillance at the Centers for Disease Control & Prevention, and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families.

For me on a very concrete level, growing from how Joy has propelled me into autism advocacy -- this is what funded my LEND training two years ago, an amazing program that Elvis Sightings readers heard about at length as my LEND year progressed. Via a state implementation grant, it also made possible the summer work that I did in 2010 on a recently-released publication called Finding Your Way: A Navigation Guide for Families Who Have Children and Youth With Special Health Care Needs and Disabilities.

On a macro level, this funding has helped with great strides in research and education and awareness all across the country. We can't let it stop now!

The key legislator right now is House Majority Leader Eric Cantor, who was a co-sponsor of the original 2006 act and must bring CARA to the House floor for a vote in order for it to pass. UPDATE: He pledged to do it!! Can you give his office a quick call? Here's the phone info & a short script:

===============
Call House Majority Leader Eric Cantor and politely ask him to allow the Combating Autism Reauthorization Act (H.R. 2005) to go to the floor for a vote. CALL HERE: 202-225-4000

What to say:
"Hi. My name is [name] and I am calling to ask Leader Cantor to allow HR 2005, The Combating Autism Reauthorization Act, to go to the House floor for a vote. The funding is crucial for research and awareness on autism, and support for children with autism and their families. Thank you."
================

If you've got another couple of minutes, here are some quick next-steps:

1) Follow up the call to Cantor's office with an e-mail -- ~~this link will help generate one for you!~~ Here's a new link to communicate a thank-you message!

2) E-mail your own Senators & Representative: if you follow this link to the Autism Society "Vote 4 Autism" page, you can read more about CARA and then click on the "Take Action" button to send messages to your legislators.

Thank you so much, in advance!

============
P.S. The initiative is crucial but the title of the law is... unfortunate. I like the acronym CARA much better, meaning "dear" or "beloved" in several languages.

Go Jump in a Lake!

2011-09-02T06:43:00.001-05:00

I guess if one's child is going to be driven by an unspoken imperative to "Go jump in a lake!" it's good to have a beautiful lake to jump into.

The JoyFamily returned on Monday from another long-weekend jaunt to the family cabins in the Upper Peninsula of Michigan. I'm pleased to report that our trip home was nicely uneventful, in contrast to our Memorial Day mudbath. The vacation itself was free of marauding ruffed grouse, and nary an exploding shower pipe was to be found.

The big novelty of the trip was the company of AuntieS, who hadn't been up to the lake in 3 decades. It was such a treat to have her there, I didn't even mind "letting" her win a round of dice the last night we were there... Besides, she took pictures! (Photos below are courtesy of AuntieS).

For Joy, the top-priority draw this visit was the lake itself. We hadn't been in the cabin five minutes, just beginning to unload and unpack, when we suddenly heard the lake-side screen door slam and Joy was hurtling down the steep embankment toward the pier. How she kept on her feet the whole way down, I'll never know -- I'm not even sure how I managed to stay upright in pursuit. I caught up with her at the last second, just as she paused at the far end of the pier before launching herself into the drink.

In past years, we've been able to sit on the pier and play little games, or swing on the rickety metal swingset between the cabins, or hang out happily for hours on the screen-porch overlooking the lake. Not this time around. Some switch on Joy's mixer-board had assumed a new setting -- the "Go jump in a lake" setting. Being in sight of the lake without actually jumping in? Not to be considered.

Fortunately, the weather cooperated for lake-splashings every afternoon we were there. Summer is waning up north, but by afternoon the sun had always warmed up the air and the lake enough for a swim.

The first afternoon, we splashed both off the pier and with the rest of the family off the side of the pontoon boat.

The next day we learned to float tummy-down on a little inflatable life-ring toy.

The third day, Joy discovered the delight of driving her hands down into the muddy sand of the lakebed. That was so much fun, she was even willing to dunk her head under when we went into slightly deeper water, for the joy of that sloppy lakebed.

We had other fine moments as well: unusual success at going for walks down the woodland roads, and playing with ferns WITHOUT consuming them, and an unusually calm ride home.

Gorgeous weather aside, this was not really an ideal weekend to upset the Joy-routine with a trip to the lake. We've had fruit-basket-upset with our therapy staffing and schedule and location through the course of August, with changes still happening. Then our summer childcare arrangement came to an end mid-August, leaving us patching together the last two weeks. And then the crowning routine-buster -- the start of first grade, with shortened days both Thursday and Friday, and a new teacher and case manager.

Since I didn't get this written before Day 1 of school actually happened, I'll let you in on the first day's outcome -- Joy's two main special education assistants are with her again this year. The first day of first grade was not at all like the traumatic first day of kindergarten. Not without some stress of course, but overall a big relief to everyone involved. Onward to Day 2!

Accommodation

2011-08-22T06:47:00.000-05:00

I had the occasion to go through some old e-mail earlier this summer, from around the time of Joy's autism diagnosis at the end of 2006. The diagnosis was not what we'd been expecting, though we'd visited a developmentalist who is a recognized autism expert. The post-diagnosis e-mail conversations with daycare & birth-to-three providers reminded me of one of the painful eye-openers from the evaluation appointment. Since (as my regular readers know) I like to look on the bright side, I was wanting to make sure the doctor saw what Joy could do if we gave her just a little help. But for evaluation purposes, the doctor needed to see everything that Joy could not do when all our little helpfulnesses were taken away. So we had to back off, and take a good hard look at what happened when Joy was on her own in unfamiliar territory with an unfamiliar doc being asked to do unfamiliar things with no intercession from us. It wasn't an easy thing to witness.

We'd been accommodating like crazy, without quite realizing the extent of it.

And guess what? We still accommodate like crazy, probably on auto-pilot too often still, though I like to think that we have a better framework for evaluating what's getting in the way. Accommodation is a balance, with immense positives for doing it right, and negatives (as with just about anything) for going overboard.

Of course, with any kid, you can't always be doing everything for them or they'll never learn to do things by themselves. Joy's no exception. But with Joy, and with autism in the picture, we have to figure out what we do need to do for her, and how to arrange her surroundings and our schedules, just to make things even possible.

Our backyard setup is one example that's been on my mind lately. Back at the beginning of this blog, we enclosed our large backyard in a lovely tall wooden fence, so Joy couldn't dash away into danger outside our yard. Immediately our stress level during outside play went down! We no longer had to hover on high alert lest Joy should suddenly dash and we'd need to spring into full dash ourselves to keep up & catch up.

This summer, unfortunately, there's been some stressful dashing within the yard, with Joy determined to acquire and CONSUME things she really shouldn't. One example has been our huge old 30-foot apple tree, which loads up with apples every other year. This was the year! and, not only does it load up, it drops them on the ground. And Joy has an insatiable desire to eat these luscious windfalls, no matter how full of rot and worms and ants they may get after sitting on the ground for a while. So I've spent hours collecting rotten windfalls and carting them to the compost pile at the back of the yard, often trying to get out in the early morning to take care of the overnight mess before Joy gets out of bed -- because once I'm on my own with her and we're in the yard, I can't move fast enough to clean up one apple before she gets the next one. Fortunately, apple season does eventually come to an end. We keep thinking the tree has dropped its LAST apple. Maybe the one-more it dropped yesterday will be it?

Then there's been a little stand of ferns and other shade-plants that grows up under the cherry trees in the middle of the back yard, that we affectionately call "the jungle." The little fronds on the ferns have been irresistable to Joy as well. She hovers by the plants (a mosquito-haven with all that greenery and shade), fondles and picks the fronds, carries them around -- and then, quicker than lightning, into the mouth they go. Bleah! We found ourselves having to cut yard-play short because Joy would get so fixated on picking and eating the ferns. Eventually Rose and I went the full-accommodation route. We cut down the jungle on Friday evening. Though it no longer provides a haven for the wild bunnies that Joy loves to chase around the yard, at least the fern issue is gone. Joy lost interest immediately, hurrah!

Should we have tried to teach her just to stay away from the apples and the ferns? Maybe. But what was happening instead was that the yard was becoming a non-livable place -- which, now that we've started having some gloriously comfortable weather, would be a crying shame.

It would also be too bad not to get full use out of this:

Three cheers to JoyDad for making this delightful belated-birthday present happen! Neither he nor I have a particular bent toward construction projects, so it's a step out of the comfort zone to do something like this. But we've got neighborhood friends who did this project in their own yard a few years ago, and the dad volunteered both his experience and his powertools to set up a temporary woodshop in our garage. JoyDad acquired the swingset kit and the lumber, and with two other helpers (one from his band, one from church) they got the swingset knocked together all of a Saturday morning. Then we re-assembled that evening for a barbecue & kiddie pool and swingset play.

Joy wasn't in a mood to come out and swing and reward the laborers for their work the minute it was done. But we've had hours of swinging since then -- and it has become much easier without the temptations to go dashing off for a snack of apple or fern between swingings.

This hasn't been an easy summer, on the whole. It's the first year we've had the situation that both kids have been in school, so both kids need new summer care -- previous years, Joy had year-round daycare and we sent Rose to summer day-camp-care. But day-camp-care that works for Rose won't work for Joy... so we went the sitter route. Two days of sitter, two and a half days of JoyMama, half a day of JoyDad per week. Quite a lot more direct Joy-care than we had during the school year! On top of that, we've been doing a home-based therapy schedule where we've had two-hour sessions 4 nights a week, plus one on Saturday morning. But then our provider changed policies, such that they'd no longer offer in-home services to families like ours... existing home-based line therapists were grandfathered in, but they wouldn't train anyone else to work at home. So the one line therapists who did 3 nights with us moved out of town mid-summer, and the clinic doesn't do evening hours in the summer, so that's three more evenings we're on-duty now. Then our remaining therapist gave notice, and we'll have to start with someone new in clinic when the school year starts.

I'm apprehensive about the upcoming school year. Long-time readers may remember the traumatic transition into kindergarten last year. The one saving-grace anchor was the familiar evening therapy routine that Joy could come home to... an anchor that has now been cut loose. We know that she'll have a different case manager at school, new teacher of course, and we don't yet know if she'll have ANY familiar staff, though we're hoping. We're getting a lot less prep-meeting time than we got last year too.

And we've had some rough behaviors ramping up as the summer wanes, probably due in some part to the fact that it's SO MUCH me & JoyDad on duty lately. We're feeling stretched thin, holding things together with duct-tape-and-string. (I can hardly imagine what it would be to have only one parent to do it all, for whatever reason.)

So we continue to accommodate what we can, hoping we can find a better balance once we get through whatever transition issues will be upon us with the start of September. I might even be able to blog more often, but the ongoing activity on the blog will have to be part of what I consider as the balance becomes (hopefully) less duct-tape-and-string and more deliberate.

Think good thoughts for us and Joy!

Hey, Nonny Nonny

2011-08-04T21:48:00.002-05:00

JoyDad & I had the immense good fortune last Friday to attend the premiere of a brand new play last weekend, The Lamentable Tragedie of Scott Walker, Govnour of Wisconsin. The playwright and director is a friend from church -- and also our favorite Elvis impersonator -- and we'd been hearing for weeks about the play from various angles within the congregation: the writing, several of the actors, the props, the costuming (including Republican codpieces aplenty!)

Though we weren't able to assist with any of the requested props, nor lend our acting talents, we did get a back-channel participation request right from the start. Would we be willing, the playwright asked, to lend him our story for use in the play? We were glad to say him "aye," trusting that he'd do right by us, reflecting what the Wisconsin budget means for us and others like us, and why we've raised our voices as we have. We didn't get much in the way of updates after that, a brief hint or two about who we'd turned into, and then the last update made it sound as if the final product had morphed quite far afield of any JoyFamily roots.

In the final weeks of preparation, JoyDad ended up contributing a recorded guitar solo for an original song, so we knew he'd have at least that presence in the production!

Lots of anticipation as we left Rose & Joy with yet another pair of friends from our congregation, to go see how the Lamentable Tragedie would represent what has happened in our state since February.

It well exceeded my high expectations.

The play takes the form of "Fakespeare," telling the Wisconsin 2011 story in lively Bardic borrowings and transformations. This English-major would see it again just for the thrill of trying to keep track of how many snippets from the canon I could identify! The tragically over-reaching, self-absorbed yet un-self-aware Walker character wreaks his administration upon the state of Wisconsin, eminently recognizable as our governor, with moments as Hamlet, Macbeth, and even Juliet! (Believe me, it works. Just go with it.)

A small but multi-talented cast of characters, gloriously costumed in multiple roles, ably represented state senators on both sides of the aisle, protesters and other Capitol denizens.

And then there was a touch of Dickens among the Shakespeare, a little Cratchit-ish family where the hard-working father is a non-partisan public employee (who plays a mean electric lyre), and the Tiny Tim-ish character relies on Medical Assistance, and the mother finds herself giving testimony that is openly ignored by the powers that be. And yes, my moment on the barrel with a bullhorn gets a nod as well. We were definitely recognizable to ourselves, and to friends as well.

Even without the interweaving of personal elements, I'd have been bowled over by this play, and how well it evokes what happened (and is still happening) here. The dialogue is wickedly funny and clever, and manages not just to bring a powerful critique of the Walker administration, but swipe at protester and senatorial foibles on the left as well, making the heroes all the more heroic as they eventually band together.

The glimpses of JoyFamily on that small, spare stage made me feel simultaneously both proud and very much aware of being a small, small part in the larger play that is working out on the stage of Madison, and Wisconsin, even now. That larger play is still being written, and will take a dramatic turn in one way or another on Tuesday with the recall elections as six Republican senators, who have been marching in lock-step with Walker, must answer to the voting public.

On Saturday morning, JoyDad and I were still thinking on the Lamentable Tragedie, and singing hey, nonny nonny. And we had an Elvis-sighting at the breakfast table. Joy clearly echoed "nonny, nonny." Just once, but it was definitely there.

Thank you, Doug, and players and participants all!

Ninety-nine Red Balloons

2011-07-28T06:40:00.002-05:00

I'm dating myself with this memory, but the 1982 song "99 Red Balloons (99 Luftballons)" by Nena was part of the soundtrack of my high-school years.

Ninety-nine red balloons
Floating in the summer sky
Panic bells, it's red alert
There's something here from somewhere else...

This was at about the time as the movie "War Games," when the thought of accidental global thermonuclear war was in the public imagination. The song protested the war machine with a fable of two children who release a bevy of toy balloons. Some country's surveillance software takes the balloons for a security threat and: "This is what we've waited for -- this is it, boys, this is war!"

I hadn't thought of that song for years, even when my daughters began to show great delight in helium balloons. A red birthday-balloon tradition became especially strong with Rose, whose February birthday falls at just the right season for discount Valentine balloons!

For Joy, mylar balloons have always been a stimmy delight, from their dangly ribbons to their delightful crackly feel. Once Joy came along, Rose had to learn to share the heart balloons -- though there were always plenty to go around.

Now in Wisconsin, mylar heart-balloons have taken on a whole new meaning.

It started in February, when the protests against Governor Walker's appalling budget proposals broke out. At some point during the initial protests, someone released a heart balloon in the Rotunda. It floated up to the dome... and stayed there. And stayed, and stayed. As the protests morphed into work on the recall elections, and the major remaining protest presence in the Capitol was the daily Solidarity Singalong, the heart balloon became a symbol of the endurance of the protests. A Capitol Balloon Facebook page sprang up, and a Twitter account. When eventually the balloon did come down toward the end of June, it was taken to the Wisconsin Historical Society to be preserved for posterity.

With the original balloon gone, replacements began trickling in. More balloons floated up to take its place, and protesters began delivering balloons to legislators. The Department of Administration and the Capitol police began to take notice. Soon there were reports of an arrest for a balloon release, and of police officers tailing a protester as she delivered balloons to legislative offices.

Then on Tuesday, a bizarre act of violence. The protester who had delivered the balloons was singing toward the end of that day's Solidarity Singalong, bearing a balloon ready for delivery to yet another office, when the facilities manager accosted her and began stabbing her balloon with a knife, repeatedly! By the time the balloon was good and dead, there was blood on the protester and on the floor, though she had not been injured (it seems the knife-wielder had managed to cut himself in the process.) He then took off, leaving spatters of blood in front of the stairs that lead to the Wisconsin Supreme Court -- and she followed to demand his identification. Instead of providing it, the protester & witnesses relate, he grabbed her and threw her into the door of the women's restroom.

The mainstream media coverage has been misleading, sadly at odds with the witness accounts, painting the incident as a little ol' argument that ended in a state employee popping a protester's balloon. The Department of Administration says that their employee hurt his hand in a tumble on the stairs before the confrontation (why he'd go accost a protester rather than attend to the dripping blood, nobody can say.)

Fortunately, between Facebook and Twitter and blogs, we needn't rely the mainstream press for the whole story. By the next day, the eyewitness accounts had made the rounds -- and the response at Wednesday's Solidarity Singalong at the Capitol was incredible.

Our little family was there.

We didn't bring any balloons ourselves, but there were plenty to go around. The Rotunda was alive with heart balloons, and clever signs ("You've already broken my heart -- you didn't need to STAB it too!"), and children running and playing. The crowd was close to 200!

Instead of ruffling the Capitol authorities with a big balloon-release, the organizers attached their balloon-clusters to large spools of ribbon, reeling them up to the dome for the singalong hour, and then back down afterwards. Of course, with so many individual balloons handed out to folks like Rose & Joy, some were bound to escape. We almost lost Joy's, but I caught it just in time and re-attached the string!

Joy isn't entirely thrilled with these singalong events, but she tolerates them if we provide enough food and enough distraction. The balloon was a great help, and has been fun at home too. Meanwhile, the noon protests do provide a small way for me to contribute while still on childcare duty, and lift my spirits as well.

Our struggle in Wisconsin isn't quite the apocalyptic vision from Nena's song, but the metaphor isn't unrelated. Gov. Walker himself referred to his first budget-attack as "dropping the bomb" when he thought he was talking to billionnaire David Koch on the phone -- but was actually getting pranked by a blogger. And this legislative session has surely left a swath of destruction and rubble in its wake. (Examples abound at a clever new website called WTF has Wisconsin Governor Scott Walker done so far?)

Recall elections in under two weeks. On August 9 the recalled Republicans face their Democratic challengers, on the 16th the recalled Democrats try to hold their seats as well. Polling shows most of the races close -- Republicans have no insurmountable leads -- we've got a real chance to flip the Senate here!

But meanwhile...

...Ninety-nine dreams I have had
And every one a red balloon
It's all over, I'm standing pretty
In the dust that was a city

I could find a souvenir
Just to prove the world was here
Here it is, a red balloon
I think of you and let it go

Special Needs Vouchers in Florida: "Like a Perverse Science Experiment"

2011-07-14T07:38:00.000-05:00

Here is how a recent article in the Miami New Times described Florida's McKay Special Needs Scholarship program:

It's like a perverse science experiment, using disabled school kids as lab rats and funded by nine figures in taxpayer cash: Dole out millions to anybody calling himself an educator. Don't regulate curriculum or even visit campuses to see where the money is going.

Except that description isn't fair to science experiments, in the absence of an attempt to create a hypothesis capable of being tested, or to collect meaningful data.

The article, titled "McKay scholarship program sparks a cottage industry of fraud and chaos," tells a very different side of the story than the glowing voucher-advocate reports that are being used to promote similar legislation in Wisconsin.
The program works like this: any public school student with an Individual Education Plan (IEP) may enroll in a private school using taxpayer dollars that would have been spent for their public-school education. Public schools are required to provide a free and appropriate education to students with disabilities under the federal Individuals with Disabilities Education Act (IDEA).

Unfortunately, the private schools have no such requirement. They don't have to provide anything, or have so much as a single special-educator or therapist on staff. Not even when they're taking students funded with taxpayer dollars.

In Florida, according to the Miami New Times article, getting in on the McKay money is ridiculously simple:

Registering a private school is as easy as filing minimal start-up paperwork. Becoming eligible to receive McKay payments isn't much tougher and relies mostly on the honor system: You must claim to have a location, promise to run background checks on staffers, and either have been in business for three years or have access to a surety loan or line of credit.

These astonishingly loose conditions are followed up with an almost total lack of accountability, allowing fraud to flourish. In the 12 years since the program was introduced, there have been 39 Department of Education investigations in McKay voucher fraud, only 3 of which have resulted in arrest. Far from being an accolade for the quality of the program, it's an indictment of the lax oversight: the department rarely looks for trouble unless someone -- often "an associate with an axe to grind" according to the Miami New Times article -- files a report. Former Florida DOE investigator Seth Stoughton, specializing in voucher fraud, told the New Times that the most proactive his investigations ever got was driving around with an address list of McKay schools to make sure that schools actually existed at those addresses. He claimed that the DOE failed to uncover "even a significant fraction" of the existing fraud.

A couple of examples via the New Times of the fraud that was revealed:

- The most common caper involves simple forgery: school administrators doctoring attendance records and signing parents' names to show that students are enrolled when they're actually not. Jacksonville's Success Academy — which received $4.8 million — was likely the largest such case. From 2001 through 2005, the school accepted $421,000 for 52 students who were enrolled in public schools.

- At Muskateer's Academy in Hialeah (Stoughton says of the name: "I think they just had no idea how to spell"), husband and wife school owners Jacqueline and Erick Cermeno were indicted for stealing several students' disability information to falsely enroll them and pocket thousands in tuition. Muskateer's received $794,000 from the state.

But outright criminality is only one of the problems among schools accepting McKay vouchers. Since the curricula and teachers and locations are essentially unregulated, it leads to situations like the following at South Florida Prep:

Two hundred students were crammed into ever-changing school locations, including a dingy strip-mall space above a liquor store and down the hall from an Asian massage parlor. Eventually, fire marshals and sheriffs condemned the "campus" as unfit for habitation, pushing the student body into transience in church foyers and public parks.

The teachers were mostly in their early 20s. An afternoon for the high school students might consist of watching a VHS tape of a 1976 Laurence Fishburne blaxploitation flick — Cornbread, Earl and Me — and then summarizing the plot. In one class session, a middle school teacher recommended putting "mother nature" — a woman's period — into spaghetti sauce to keep a husband under thumb. "We had no materials," says Nicolas Norris, who taught music despite the lack of a single instrument. "There were no teacher edition books. There was no curriculum."

Not only are desperately substandard schools receiving taxpayer money, the public schools appear to be actively pushing high school seniors out the door and into McKay schools before they have to take the all-important FCAT exam:

Beginning a few school years ago, Carol City Senior High social studies teacher Paul Moore was mystified by a new, perennial exodus of his "problem" seniors — students who might fare badly on FCATs. They were kids he usually liked to have one last-ditch shot at improving their studies.

Eventually, he figured out where many of them had ended up: Parkway Academy in Miramar, a charter school and target in 2009 of the Florida High School Athletic Association's largest fine — $260,000; later reduced to $118,000 — for dozens of football recruiting violations. Other of Moore's missing seniors had scattered to private schools, most of them McKay-funded. "It's an absolute policy in this state now to move at-risk kids to charter or private schools," Moore says.... The illicit practice even has a name: "FCAT cleansing."

I'll let you read the article itself to learn about how new McKay start-ups go recruiting in economically-disadvantaged urban areas, and how the program is set to expand.

You can bet that the proponents of the Special Needs Scholarship legislation that has cropped up in Wisconsin and elsewhere are not acknowledging these abuses in their materials (for example on this site pushing the Wisconsin version of the bill). I'm perfectly willing to be fairer than that and acknowledge that there are families who had bad experiences in the public schools, who have been able to use these vouchers to move into better private-school situations.

Priority number one, though, should be to FIX the public schools for students with special needs, rather than diverting their funding. And why in the world would Wisconsin want to open the door to the abuses that have become evident in Florida? As a press release from the Survival Coalition of Wisconsin Disability Organizations puts it, "This is not what we want for Wisconsin students with disabilities!"

Current voucher proposals on the table in Wisconsin, which have been crafted without the support of any established statewide disability organization, do not include formal oversight or accountability to families or students. There is no guarantee that a child will receive the required and individualized services they have a right to in the public school. At the same time, voucher programs are expected to drain resources from already strapped public schools which are trying to serve special education students with research-based practices.

The Special Needs Scholarship Program bill in Wisconsin, AB110, which had a public committee-hearing this spring, will receive a new legislative push in the fall. I invite friends of Elvis Sightings to join me in opposing this deeply-flawed legislation -- for the sake of Rose and Joy, and so many others like them!

Joy-Shaped

2011-07-08T06:57:00.000-05:00

Quick, fun note to post this morning. I've discovered a new tool for making "word cloud" images from the words contained in documents: on a web site called Tagxedo. (They've got both a freebie version, which I used, and a paid product.) Here's what came out when I put in recent posts on the Elvis Sightings blog, and chose a particularly appropriate template:

I like the idea of using the principle of "joy" to shape my words!

Celebrating Independence

2011-07-03T07:14:00.000-05:00

A little over a year ago, I wrote about Joy's new sturdy big-girl tricycle that she got for a birthday present. She wasn't immediately impressed with it, but once she got to school, they were using the same kind of trike and she learned to trike up and down the halls like crazy! We're continuing to practice at home:

Our street is quiet enough that she can ride on the street as well as the driveway, though it's good to have another person nearby.

Rose doesn't want to be left out of the fun either, though her recent new inches have made it more challenging to fit herself onto Joy's trike:

Speaking of sizing, I pulled out Rose's old training-wheels bike just to give it a try. Joy's too big for it! We tried just a little bit, and she at least stayed upright, but she kept wanting to stretch her feet forward to the front wheel where the pedals SHOULD be, and also wanting to press the pedals backwards (which on the bike activates the braking function, but on the trike puts you into reverse.) I'll see if I can adjust the seat and handlebars for our next try, but I'm thinking we're going to need a larger training-wheels bike to make this work.

Meanwhile, we're having a long, summer-y weekend here. Real-live fireworks aren't on the agenda, since they're so very late in the evening and so very noisy besides. But Rose has come up with a substitute:

and a message for anyone who comes by:

Keeping Busy

2011-06-28T06:50:00.000-05:00

Lots of busy, so far this summer.

Rose decided that she rather liked the sidewalk-chalk activities from our trip to the Capitol the other week. Since we haven't taken the opportunity to do any more political work downtown since then, she brought the sidewalk chalk to our own neighborhood, creating a collaborative mural all over the driveway apron that we share with a couple other homes.

She didn't just draw it all herself, though. No, she invited the neighborhood in, with chalked-invitations all the way up the street:

She drew blank boxes for others to fill in, drew a snowman for others to add features to, solicited responses to little jokes. Then she left chalk out to see what would happen... and people came! We saw several adults stop and add their doodles on their way down to the restaurant or local grocery. There aren't many children in our neighborhood, but we got enthusaistic participation from several of the kids nearby.

Joy, meanwhile, continues to busily request our involvement in little interactive games too -- such as peek-a-boo.

Like the new cut? I get better at the boyish cut every time I do it, though Joy isn't really fond of getting it done and makes the activity a challenge. I pretty much had to do it, though, and here's why:

Again. Dangit.

Yes, she's been busy once again, stimmy-pulling out her own hair, mostly along the line of her nevus-scar.

I didn't want to take it all the way down to a bald-buzz this time. But I may have to yet. She's still working on trying to pull the stubby little hairs that she's got left.

At least it's summer. Her scalp may get too much sun, but it won't be cold.

Summer Activities (and, Budgets are Moral Documents)

2011-06-17T06:44:00.002-05:00

Now that school's out, I'm getting to spend a lot more time with my girls!

Yesterday started with a taunt left on our deck railing, from one of the squirrels who've been raiding our strawberry patch:

Our top two morning activities were puddle-stomping and Capitol-visiting.

It was a sunny day, making for some excellent reflections.

Then after we got cleaned up from that little escapade, we headed down to the Capitol, where the Senatorial rubber-stamp was about to be put on the devastating Wisconsin budget, all-cuts-all-the-time (major tax cuts for corporations, major cuts to schools and health care and middle-and-lower-income families, zero shared-sacrifice for those at the top of the heap.)

The Capitol was fairly quiet at mid-morning, other than a signficantly beefed-up police presence. We got one kindly officer to take our picture beside Wisconsin's replica of the Liberty Bell. Here's the plaque that sits next to it:

The top line reads, "Dedicated to you, a free citizen in a free land." Oh, the irony, after having had to go through a security gauntlet to get into the Capitol, designed solely to squelch protest (they'll be removing the metal detectors soon, within days of the budget taking effect.)

We felt the "freedom" gut-punch once more as we attempted to visit our Senator's office. We walked past Senator Risser's office door by accident a couple of times, because the 3-officer law-enforcement presence obscured our view of the names on the door. (Risser's office shares a front door with Senator Leah Vukmir, from across the aisle). When we finally figured out that this was where we wanted to be, and asked the lawmen if we could please enter, they asked us if we had an appointment. Well, no, we didn't -- we're used to dropping in unannounced for visits with the staff, that's how things operate in Senator Risser's office! No ma'am, we're not supposed to let you in without an appointment.

I'm glad I'm a known quantity in my state senator's office, for I was able to send in my card with one of the officers, and then the doors swung wide. After our visit, one of the Risser staffers came out to speak to ~~Senator Vukmir's palace guard~~ the lawmen, and let them know that Senator Risser's office wants to speak with any constituent who shows up, appointment or no!

Next we took the elevator up, to wander around the observation deck at the base of the dome, and look out over the city and lakes from all angles.

And then we went down to the Square again, and left some messages for anyone who wanted to read them, until the next rain washes them away.

Budgets are moral documents. And the budget that passed in Wisconsin last night badly, badly fails that standard.

(Funny how sidewalk chalk is cute when it's a hopscotch frame or child's artwork, and VANDALISM! if it's got certain political content.)

Perception Creates Reality

2011-06-15T07:36:00.000-05:00

I note that my posts of late have been very upbeat. There is plenty in Joy's life, in our lives, to feel upbeat about! Joy has continued to do some amazing things as spring transitions into summer. Here's a sequence from just yesterday morning that I snapped while she was playing independently with her musical gears-toy, experimenting all-on-her-own with placing things on the central gear to see them spin.

A stack of gears that she built herself:

The bouncy-ball she got at the drugstore the other day:

Her echo-ey microphone:

These are true stories that we tell, that encourage us to keep going -- despite the fact that she's pulled enough hair out of another patch on her head to make us consider going with the buzz-cut again. And the fact that she's been apparently-randomly refusing food, and making those protests by suddenly spit-spraying large mouthfuls right into our faces.

Here are some more lovely true stories from yesterday morning, as we went to the Capitol Square once more to protest the impending disastrous budget bill:

I found myself being interviewed by a reporter for our local paper, who was intrigued by my "Budgets are Moral Documents" sign. Here's the interview as it was happening...

I got a chance to put in a plug for community long-term-care:

[JoyMama] pushed her daughter in a stroller and carried a “Budgets Are Moral Documents” sign. She said her family would be harmed by proposed cuts to state funding for the long-term care of people with disabilities.

“We keep hoping folks who have acted as moderate Republicans in the past will listen to their consciences,” she said.

Then Rose found, to her delight, a group of protesters hula-hooping for justice! An intern from a local paper filmed her and Twittered the video out into cyberspace -- Rose is the one on the left doing the stand-on-one-foot tricks. (Sorry 'bout the ads.)

Then around the corner came a stream of educators marching against the education cuts in the budget -- and who should be leading the march but Joy's special education team! So Joy and I left Rose with the hula-hoopers
while we made a circuit of the Square in the company of Joy's beloved teachers.

It was a beautiful day. It was good to be with sincere, creative people, determinedly protesting the trainwreck of a budget and other legislation that is being crammed through double-time, in a little-used procedure called "extraordinary session" that has NEVER been used to passed a budget before.

And then we learned that, late in the day, amazingly-coincidentally in the nick of time, the Wisconsin Supreme Court (along partisan lines) had overturned a lower court's ruling that the so-called "budget repair bill" violated the state's open-meetings law. The conservative members of the supposedly-non-partisan Supreme Court, bought and paid for by floods of corporate campaign cash, argued that the courts could not make the legislature abide by laws governing its own procedures unless those laws were part of the Constitution. And the open-meetings law is just a statute, not part of the Constitution. [I think I'm understanding this right. It's very tangled.]

How did we come to this?

Well, perception creates reality. And the wealthiest corporate interests of this country have bought the perceptions of anyone who gets their information from Fox News, or right-wing radio, or conservative campaign commercials. They've ridden those perceptions to electoral victories that then allow them to pass rapid-fire, coordinated, cookie-cutter corporate-written legislation via the American Legislative Exchange Council (ALEC).

And they've effectively spread the lie that the coordinated propaganda and fear-mongering over at Fox News is somehow equivalent to how the rest of the news networks run...

I am still hopeful about the recall elections in Wisconsin, that we can flip the state senate this summer and temporarily stop the bleeding. If you are at all inclined to contribute to this effort, you can do so via the Act Blue fundraising page.

But I am feeling very low right now about the powerful, incredibly wealthy forces that brought us to this point, and the alternate propaganda-reality that they have created.

Northwoods Adventures, May 2011

2011-06-07T06:31:00.000-05:00

Here's the long-promised roundup of our Memorial Day at the lake.

Balloons for the birthday girl:

And for her big sister:

We walked in the woods:

And blew bubbles on the pier:

And played with the bubble-swords on the screen-porch (thank you AuntLO and UncleDO for the gift of bubbly entertainment!)

And enjoyed the heck out of pine-needles (so soft! so fragrant!):

We had unusually long stretches of independent play with the ring-stacker:

And lots of people-peek play with the pompom:

And the rocking chair:

Rose learned to cast with a borrowed fishing rod:

And caught a 20-inch northern pike off the end of the pier! (Actually, Rose hooked it, JoyDad landed it, and GrampaK de-hooked and released it. Rose was not interested in even get near enough to "her" fish to be photographed with it.)

Very tame, so far. Minor adventures only. Nothing nearly so eventful as last year...

Until we set out for home.

We'd decided to try & save some time by going out the "back way," down a remote logging road that had recently been widened a little by a new logging operation. We actually drove out to town that way on Monday, so we knew the road was passable (if a little muddy & exciting to drive.) We and GrampaK were the last ones out on Tuesday -- he went one way, we went the other.

And before we'd gotten more than a couple miles out, we zigged where we shoulda zagged -- and the passenger wheels sunk deep into soft mud at the side of the road.

"Everybody out," declared JoyDad, after the first attempt at backing up went nowhere.

I swung my door open... and it barely cleared the mud.

So we all clambered out the driver's side doors, and I spent the next 10 minutes holding Joy and getting bitten by mosquitoes while JoyDad got muddier and muddier trying to dig out (without tools) or toss something under the wheels for traction (a losing battle.)

Finally we decided that someone needed to hike out. Probably about 3 hours walk to the nearest house. We only had the one cell phone (mine) and of course no reception back-of-the-beyond as we were.

So the mud-spattered JoyDad set off down the road, glancing down at my cell for "bars" about every ten steps. I piled back into the car in the mud with the girls, out of mosquito range, to settle in to try & entertain them for who-knew-how-long. With no means of outside communication whatsoever.

Rose and Joy were two different entertainment challenges. Rose was aware enough of the situation to have some imaginative worries, and kept asking when Daddy was coming back. (As if I knew. He'd set out at 8:45. In my mind, the earliest he could possibly return with help would be 11am, and that was terrrrribly optimistic. But I didn't name a time.)

We snacked. I read chapter after chapter from Little Women. Joy watched DVD -- how long would the battery last? The sun started streaming through the trees onto the car, but I didn't dare run the air for more than 5 minutes every half hour, for fear of killing the battery too...

And then, just at 11:00, a tow-truck appeared through the leaves.

I didn't remember to get out with the camera to record the sunken car, but here's how it looked just after rescue:

We had guardian angels watching over us that day. JoyDad got a shoulder-tap from the first one about 15 minutes into his hike. He was watching that phone for the non-existent "bars" when all of a sudden... it RANG! Still no bars visible, but just enough connectivity that it was able to let him know that there was a message waiting.

That message was from the angel -- because I almost NEVER use my cell unless I'm setting up a specific call. Very few people have the number, and even fewer use it unless we've set up to speak. And yet, someone from home-town had called, just about the time we were getting stuck.

If JoyDad hadn't gotten that voice-mail alert, he'd never have known about the patch of connectivity back there in the woods. As it was, he was able to call 911 and be connected to a towing-company dispatcher and get help on the way.

And then he walked out of the connectivity and didn't hit another patch before finally intercepting the tow-truck, about two hours after his hike began.

Second angel was a mechanic in Merrill, Wisconsin, who was able to take a look at our vehicle when it started making awful noise en-route, and (instead of taking us for a huge sum of cash in our distress) assured us that we'd make it home as long as we didn't accelerate into any sharp turns.

I'll spare you the account of the rest of the trip -- it was long and warm and kinda cranky -- but we made it. And even the total expense, between the tow and the next day's necessary repairs, weren't nearly as awful as they could have been.

Wonder how next year's trip will go (she says with fear and trembling!)

Freezing the Future

2011-06-01T23:48:00.003-05:00

What are your long-term plans for Joy? asked her grandfather.

We were up at the family cabins for the long Memorial Day weekend, and we'd been very happy with how things went for Joy, compared to the struggles we've sometimes had in previous years. But she turned seven while we were there, and one can't deny that she needs an awful lot of assistance for a seven-year-old -- diaper changes, constant close surveillance lest she dart away or eat something dangerous, lots of interpretation given that she speaks few words (and not many of them clearly).

So, what will we do when she grows up, assuming that serious issues still persist?

Short answer: We don't know.

Longer answer: The "not knowing" got a whole lot scarier this past week, here in Wisconsin.

You see, while you have a certain "not knowing" with any child -- What will I be? Que sera, sera! -- of course the "not knowing" is automatically more intense with developmental disabilities. Joy is fortunate to have access to a lot of services right now, between her guaranteed public education through the age of 21, and the autism insurance that pays for therapies. We also get respite care and other services via a Medicaid waiver for children's long-term care services that helps families like ours keep their children at home rather than the institutionalization that was the norm not so many decades ago. (Many children are on a waiting list for that waiver program -- we are SO fortunate in that regard.)

But both the schooling and the waiver run out when Joy reaches adulthood, and the program that would offer the next step, long-term community-based care into adulthood has been FROZEN by Wisconsin's budget committee.

Wisconsin has been making great strides in the past years when it comes to community-living services for frail elders and people with disbilities, primarily through a program called Family Care. The top goal of Family Care, according to the Wisconsin Department of Health Services, is

Giving people better choices about where they live and what kinds of services and supports they get to meet their needs.

The Family Care program provides Aging and Disability Resource Centers to help people figure out what assistance is available, and then (for those who qualify),

the new Family Care benefit, which combines funding and services from a variety of existing programs into one flexible long-term care benefit, tailored to each individual’s needs, circumstances and preferences.

Depending on the person's need, services might include things like: adult day care, home modifications, home delivered meals, supportive home care, health care services, daily living skills training, day treatment, pre-vocational services, supported employment and more.

But in the slash-and-burn budget that is coming down the pike, the expansion of Family Care is slated to halt. As of June 30, new Family Care enrollments will stop, and people will go on waiting lists instead. This freeze will last the entire biennium, during which time waiting lists are expected to DOUBLE.

The majority-party nay-sayers on the budget committee (the Joint Finance Committee, for those folks keeping score) figure that families will figure out ways to pick up the slack for the most part -- caregiver quit her job & stay home, anyone? -- but meanwhile they've set aside some funding to put people in nursing homes in case of emergency. Talk about going backwards!

For a family like ours, the "not-knowing" is looking across a span of years yet, with frightening consequences if the trend continues. For Wisconsin families and youths currently planning their transitions out of high-school and into the adult world in the next couple of years? This is a calamity, right here and now.

A new grassroots effort called Wisconsin Families Forward is looking to avert the calamity as the budget containing the long-term care freeze moves on to the full legislature.

First, Wisconsin Families Forward is conducting a survey of families (Urgent deadline, June 3!!) to discover how it would affect people to not have the services there when their young-adults needed them:
http://www.surveymonkey.com/s/wilongtermcarecap

The Wisconsin Families Forward group also has a Facebook page!

The group is encouraging people to contact their legislators -- the budget goes to the full legislature next, so there's one last chance to lift the caps.

There will also be press events around the state; the one in Madison is Thursday, June 9, 10am at the Capitol.

We've got to keep telling the stories!

==========

Those of you who have been long-time readers of this blog know that after Memorial Day weekend, I have great fun with the post-getaway wrap-up blogging. I promise, there will be such a post -- perhaps not such a cliffhanger as last year, but with some special excitement nonetheless!

The Sound of "Nigh-Night"

2011-05-23T21:54:00.000-05:00

Just recently I shared with you an account of the "Nigh-Night" game, where the interactive people-play Joy-giggles had me fit to be tied.

The game has morphed a little bit, such that the phrase "I love you so much!" causes even more delight than the nigh-night.

Listen to the Joy! (it's an mp3 file, about a minute long)

OK, that's about it for me this evening. Nigh-night!

Joy Rocks the Field Trip

2011-05-22T07:53:00.000-05:00

The end-of-year field trips are flowing thick and fast around here. Several times while I've been down at the Capitol in the past weeks, I've seen gaggles of kids going through the (in-defiance-of-court-order) metal detector screenings to get into The People's House. Rose will get her turn to visit with her class this coming week, though given our spring-break advocacy, she's already got some experience!

For Joy, the whole field trip thing has been a different story.

The field trips for her kindergarten class started way back this fall when we were still struggling to make it through the day without injury. Technically we would have been within our rights to demand that Joy's school personnel find SOME way, ANY way, to take her along on each and every field trip. However, we also prefer to avoid putting people in unwinnable situations. Sooo many field trips involve standing in line, waiting, lecture situations, sitting through performances. They're generally things that Joy wouldn't... well, enjoy... and I wouldn't attempt with her myself, even in the absence of the crowd-control aspect... so why would we make Joy and everyone else miserable by forcing them to go through it?

But finally with the end of the year nearing, her classroom teacher sent home a notification in the class newsletter that made my eyes shine. A field trip to a kiddie gymnastics facility!

I made known right away that I thought this field trip had "Joy" written all over it, and her staff agreed. There wasn't even much advance prep to do, at least that I knew of, other than the fact that she needs one-on-one supervision both in school and out. Joy has been generally cooperative on city bus rides, so I didn't think the transportation would be a problem.

Friday was the big day! And when I came to pick Joy up at the end of the day, when her classroom teacher came leading her classmates out of the building, he gave me a great big grin and high sign. "It went great!" he said! Sure enough, when her special-ed teacher brought Joy to the doors, she confirmed that it had been a grand success. Joy had sat independently on the bus on the way there, gotten her wiggles out enthusiastically at the gym, and snuggled happily on her aide's lap on the bus ride home.

Rose told me later that when she'd seen Joy & her aide in the hall that afternoon, the aide told Rose that she wished they could have something like that for Joy every day!

It's hard to believe that we're just a couple of weeks from the end of the school year. Joy will turn seven soon, and she'll be done with her kindergarten year. I'm just so pleased that she got to have a successful field trip to help round off her first year of elementary school.

Fit to be Tied

2011-05-15T13:09:00.001-05:00

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...

Mother's Day 2011

2011-05-08T06:04:00.000-05:00

What a lovely Mother's Day!

Rose painted me a watercolor card. Talent, the girl's got talent!
(I Photoshopped out her signature & JoyDad's for anonymity's sake, but Joy's signature manages to be pretty anonymous with no help from me.)

JoyDad got me a box of chocolates. The good stuff. I tried to share a piece with Joy, who nibbled a corner but then pushed it away. (Aw, shucks, had to eat it myself.) She was thrilled to be given the chocolate-brown ribbon from around the box to paly with, though.

Then we had home-made waffle-breakfast with Rose's friend Elizabeth and family, complete with maple-syrup and the last of the frozen strawberries from 2010. Spring came late this year, but the first strawberry blossoms did open this weekend.

Then we got out the bouncy castle for the first time this season. Joy was delighted. She bounced and bounced, both on her own and in the middle of a boisterous ball game between Rose & Elizabeth. I had to remember how tentative Joy was about her new castle when we first bought it almost three years ago. Some gifts she just has to get used to, maybe grow into. (Maybe if I plied her with high-end chocolates at regular intervals, she'd learn to appreciate them? The world may never know...)

And if all that weren't enough, the whole family went downtown to the Capitol Square for an activist Mother's Day picnic event and Solidarity Singalong. I made a new ALEC sign:

This one is protesting yet another piece of ALEC legislation that is fast-tracking its way through the Wisconsin legislature: AB110, the "Special Needs Scholarship Program Act." (They say "scholarship," I say "voucher.") Parents whose child has a public-school IEP would be able to take that child's share of public-ed tax dollars and spend it to send him or her to private school -- losing all their IDEA rights in the process, with no guarantee of any special-ed services at the private school. Though some families would surely benefit (most likely middle-to-upper income families, because the family pays the difference between the voucher & private school tuition), the big winners are those with corporate and religious interests in pushing private schools, and our public schools would be the big losers. (Here's a document of myths and facts about the bill.) So many things to protest, happening so fast!

But that's mother-commitment in Wisconsin, these days.

I hope everyone had a wonderful Mother's Day! I'll close with a salute in the form of a Facebook status-post that was making the rounds on Sunday:

For all the moms out there who had to wait longer (or still wait) to hear a first word, who spent more time in doctor's offices with their child than on playdates, who find joy in the uniqueness of their child even when others don't get it....For the moms who promote the ABILITIES and gifts of their child everyday, we salute you.

What Rose Did On Her Spring Break

2011-05-01T06:50:00.000-05:00

I'm happy to report that we survived both spring break, and the following week! Joy didn't have too much trouble with the break itself, but the first few days back at school last week were reportedly rather rough. Fortunately there were lots of giggles in the latter part of the week, both at school and at home.

I didn't quite realize how much we had done, until Rose told me about an assignment for her class. They were to write an "A to Z" poem in rhyming couplets about what they did during their break! Our spring break was a "stay-cation," with only a day-trip on Easter Sunday, but somehow we managed to pack a lot in. As evidenced by the poem that resulted! (Spelling is original to the author; I did change the one name in keeping with this blog's pseudonymous practices.)

A to Z Spring Break
by Rose
A is for April the month of Spring Break
B is for Baskets we fill with eggs that are fake
C is for Candy that fills the fake eggs
D is for my aunts Dogs who walk on four legs
E is for Egg hunt out on the grass
F is for Family who's love always lasts
G is for Get togethers with all my friends
H is for Happiness 'cause the fun never ends
I is for Illinois the state I traveled to
J is for Jelly beans that are fun to chew
K is for Kugel which I ate at Aunt Lou's
L is for Looking to buy some new shoes
M is for Matzoh a passover food
N is for Nice when I'm in a good mood
O is for Oven for baking bread
P is for Press confrence where speeches are said
Q is for Quiet time with books to read
R is for Running outside at great speed
S is for Sister who's really great
T is for T-shirts to decorate
U is for Under the tree with my sister
V is for a Visit with Senator Risser
W is for Walking the Autism Walk
X is for X-tra time to talk
Y is for Young plants begining to grow
Z is for Zoo where we didn't quite go.

Yes, the girls and I attended a press conference in the Senate parlor at the Capitol, followed by a meeting with our state Senator in his office to lobby about education and autism insurance. An unforgettable spring break civics lesson! Joy rode in her jogging stroller, and happily played with a cheerleader pompom and ate pretzels while all the action was going on.

And we did plan to go to the zoo one morning, but had a schedule change at the last minute. Oh well. We'll look for a nice spring-like zoo visit day soon.

Autism Insurance: They Were For It! (before their party/ALEC was against it)

2011-04-28T05:30:00.007-05:00

I've continued thick and fast with the advocacy here in Wisconsin. So much going on, with such blinding speed. Is it possible that it's only been two-and-a-half months since this assault started for real, with the "Attack on Wisconsin Families" bill (which its proponents liked to call the "Budget Repair Bill" -- a moniker that would have been laughable if it weren't so serious.)

I can't even address the unbelievable sequence of events in the WI Supreme Court race -- you couldn't make this stuff up if you tried. Instead, let's go for some more advocacy, OK?

As I wrote in a previous post, Now They're Coming for her Autism Insurance, there is some ugly legislation waiting in the wings to be introduced at the Capitol. Two bills, written by ALEC under the names of Sen. Leah Vukmir (R-Wauwatosa) and Rep. John Nygren (R-Marinette), are poised to destroy not only the autism insurance mandate that we worked so long and hard to achieve, but also every other insurance mandate in the state of Wisconsin. A very similar bill has passed both chambers of the Arizona legislature, and ~~lacks only Gov. Brewer's signature to spell disaster for their autism insurance mandate~~ [UPDATE!] has been vetoed by Gov. Brewer! Woohoo! (But we can't count on any such veto happening in Wisconsin...)

The Republican party in Wisconsin has been marching in lock-step on ALEC ideas, from corporate handouts (ongoing) to the weakening of consumer legal protections (January) to the evisceration of collective bargaining (currently tied up in the courts).

Funny thing about autism insurance, though.

There are more than a couple of Wisconsin GOP legislators -- still serving today -- who were FOR autism insurance before ALEC and the GOP collaborated to ride the Tea Party wave AGAINST insurance mandates!

Here are the currently-serving Republican state representatives who co-sponsored autism insurance legislation in the Assembly in both 2007 and 2009:

Rep. Dean Kaufert (R - Neenah)
Rep. Alvin Ott (R - Forest Junction)

The autism insurance bills never came to a standalone vote in the Assembly. In the 2007 version they ended up voting instead on an altogether-different (and unacceptable) substitute amendment; the 2009 version was then incorporated into budget legislation so it wasn't a separate vote. So we don't have a voting record on autism insurance in the Assembly. We do know, however, that the following currently-serving Republican state senators voted for autism insurance on 2007 SB178:

Sen. Robert Cowles (R - Green Bay)
Sen. Alberta Darling (R - River Hills)
Sen. Michael Ellis (R - Neenah)
Sen. Sheila Harsdorf (R - River Falls)
Sen. Dan Kapanke (R – La Crosse)
Sen. Luther Olsen (R – Ripon)

That makes a total of eight currently-serving Republican Wisconsin state legislators who took tangible recorded legislative action in favor of autism insurance.

Before their party / ALEC wrote the (not-yet-introduced) legislation that would kill it.

Then there are the Democrats on the record -- voting or co-sponsoring -- in support of autism insurance as well.

Co-Sponsoring Democratic Senators:
Sen. Spencer Coggs (D - Milwaukee)
Sen. Jon Erpenbach (D – Middleton)
Sen. Dave Hansen (D - Green Bay)
Sen. Robert Jauch (D - Poplar)
Sen. Julie Lassa (D - Stevens Point)
Sen. Mark Miller (D - Monona)
Sen. Fred Risser (D – Madison)
Sen. Lena Taylor (D - Milwaukee)
Sen. Kathleen Vinehout (D - Alma)

Additional Aye-Voting Democratic Senators:
Sen. Tim Carpenter (D - Milwaukee)
Sen. Robert Wirch (D - Pleasant Prairie)

Co-Sponsoring Democratic Assembly Representatives
Rep. Therese Berceau (D – Madison)
Rep. David Cullen (D - Milwaukee)
Rep. Jason Fields (D - Milwaukee)
Rep. Tamara Grigsby (D - Milwaukee)
Rep. Gary Hebl (D – Sun Prairie)
Rep. Andy Jorgensen (D - Fort Atkinson)
Rep. Margaret "Peggy" Krusick (D - Milwaukee)
Rep. Cory Mason (D - Racine)
Rep. Joe Parisi (D – Madison) -- just elected to Dane County Executive!
Rep. Mark Pocan (D – Madison)
Rep. Sondy Pope-Roberts (D – Middleton)
Rep. Jon Richards (D - Milwaukee)
Rep. Donna Seidel (D - Wausau)
Rep. Jennifer Shilling (D - La Crosse)
Rep. Christine Sinicki (D - Milwaukee)
Rep. John Steinbrink (D - Pleasant Prairie)
Rep. Robert Turner (D - Racine)
Rep. Leon Young (D - Milwaukee)

If you live in the district of any of the aforementioned legislators, here's how you can help.

Contact your legislator by phone, e-mail, or postal mail -- you can look them up online. Consider postal mail if you have time and can spare the stamp! They get less of that than they do phone/e-mail these days, so the impact may be greater. There's also plenty of time for a letter to arrive and be processed, since these bills may not be introduced until the legislature convenes in the fall (but if we put legislators on notice NOW, maybe we can even keep the measures from being introduced?)

Tell them these things:

1) Thank them for their past vote / co-sponsorship for autism insurance.

2) Tell them that autism insurance not only helps people who are able to access it, but also saves the state on Medicaid expenses! (Your personal autism-insurance story goes here if you have one.)

3) Ask them to be consistent with their previous stance by joining you in opposing LBR0373 and LRB1529, which would undermine all of Wisconsin's insurance mandates (including autism insurance)

4) Make sure to include your full street address with your signature.

I've already made a personal visit to Sen. Darling's office, with Joy at my side, to address this issue. Since I'm not a constituent of hers, I didn't get a direct visit with the senator, but I did make an appointment and had a reasonably good conversation with a staff member.

More opportunities to get your lobby on!

Autism Insurance = Medicaid Savings: Pass it On!

2011-04-25T10:55:00.001-05:00

Autism insurance for Joy's intensive autism therapy saved the state of Wisconsin $30,000 or more in Medicaid dollars in 2010.

In other news, the Wisconsin Department of Health Services is looking for ways to save money on Medicaid.

Yet two ALEC-inspired, not-yet-introduced bills (LRB0373 & LRB1529) would neutralize not only Wisconsin's autism insurance requirement, but also all the rest of our hard-won insurance mandates.

Wisconsinites: Help me connect the dots for the powers-that-be in our state!

There are two online ways to tell the Wisconsin Department of Health Services (DHS) about this. I have done both -- feel free to either do the same, or choose one or the other.

Option One: DHS has a "Virtual Town Hall Meeting" online survey, where you can submit suggestions for how to save money for Medicaid in Wisconsin. (This one does require your name and ZIP, and asks for full contact info as well).

Option Two: Wisconsin's Council for Children with Long Term Care Needs is collecting Medicaid-related suggestions to convey to DHS, and also to post on the Family Voices of Wisconsin web site. This one is child/youth focused, and does ask for an age-range of your child, and also asks your county but does not ask for personally-identifying information.

Here's what I told them both:

Due to Wisconsin's autism insurance requirement, passed in 2009, the state saved at least $30,000 in Medicaid expenses for my daughter in 2010. In 2008 and 2009, she received intensive autism therapies via the Children's Long Term Support Medicaid waiver. In 2010, our insurance paid in full for 8 months of intensive therapy that would otherwise have been borne by CLTS.

Unfortunately, two bills that have been drafted but not yet introduced(LRB0373 and LRB1529) would neutralize not only the autism insurance requirement but all Wisconsin's other insurance mandates as well. DHS should oppose this proposed legislation, as it would shift significant costs back to the state's Medical Assistance programs.

I also included a few other suggestions from a document called Survival Coalition Ideas for the DHS Town Hall Meetings (.pdf).

Anyone in Wisconsin can submit suggestions. Bonus points if you have a Wisconsin autism-insurance story of your own, and an even bigger bonus if you send your autism-insurance story to me as well (ElvisSightings@gmail.com) or post it in the comments! If you send it to me via e-mail, I'll be in touch about how you would or would not like me to share your story further.

Our stories are SO important!

Easter Sunday

2011-04-24T04:55:00.001-05:00

Weeping

May endure for the night

But joy cometh in the morning.

Christ is risen! Alleluia!

Together!

2011-04-16T06:35:00.001-05:00

An injury to one is an injury to all.
-- labor-union motto

Joy's been developing new favorite / happiest / funniest-words-in-the-world. (Remember yawns? And panda / Santa?

This April, just in time for Autism Awareness Month, she's picked on an especially good one.

"Together!"
It actually comes out somewhat like "GEH-guh!" But she wants people around her to say it right. She'll come up to you and say "geh-guh" to request that you say "together" for her. Her school staff put this together (heh!) with the song:

The more we get together, together, together,
The more we get together,
The happier we'll be!

Four "geh-guhs" for the price of one, what a deal!

"Together" is a powerful core for Autism Awareness Month. Awareness leads to action, and action gains power when people work together.

I've been running around like crazy these past weeks, trying to get set up to take advantage of Autism Awareness Month opportunities for letting people know about the autism-related issues in Wisconsin around the state budget legislation (Medicaid! and Education!) and threats to the autism insurance mandate.

One result of that scrambling has been a new advocacy page on the website of the Autism Society of Greater Madison. There's been a press release. There's been a legislator letter. There's been a budget handout. There's been the organizing for a presentation on autism and the Wisconsin budget (at which it looks like I might even be doing a little bit of presenting, though I'm not the main attraction by any means.) I've been meeting lots of people, doing lots of autism-related networking.

But it's a bigger "together" than that. With all the new legislation-based threats to people with autism in Wisconsin, not a single one of those threats is specific to autism. In fact, the word "autism" is not even mentioned in either the budget or the health insurance mandate-busting bills.

What a stunning opportunity to join coalitions and make common cause with other disability groups and other issue groups!

The coalition groups have really been out in front with legislative positions and actions. Remember the Medicaid-related press conference back on February 20? A coalition effort. There's a coalition that's working on the mandate-busting issue -- based on a coalition that originally formed in support of mental-health parity a few years back. There there are longer-term established cross-disability organizations and coalitions that throw events like the Disability Advocacy Day that just happened in Madison on April 6, and put out materials like this impressive suite on the budget.

It is good to be tapping in to all these levels of group action. There's something of a progression that could almost be charted like this:

autism ==} developmental disabilities ==} special healthcare needs ==} health care

or

autism education ==} special education ==} education

When you get to the bigger coalitions staffed with professionals, there's a whole new level of access and clout. I'm really looking forward to seeing what connections I can help foster, and what my special-interest (autism) group can both gain from, and contribute to, larger group efforts.

Together.

Today I'm headed out for more networking at the Autism Society of Wisconsin annual conference. Tomorrow our whole family is participating in a local Autism Awareness Month fundraiser, "One Walk, Big Strides for Autism" walk.

Lots of "together." Happiest thing in the world, right now!

Girls at the Pool

2011-04-09T05:09:00.000-05:00

She had noticed my daughter.

I mean, how could you not? Joy is the happiest kid in the waiting room, practically pogo-sticking up and down in her little swimsuit and squealing. The sheer delight continues through her one-on-one lesson, as she cavorts with her smiling teacher. Sometimes she gives the teacher a run for her money, too, lunging for the lovely stimmy pool dividers. At least she doesn't need an extra staffer to keep her from taking off at a run during jump-in practice like she did when we first started the swimming thing! But it's also during jump-ins that one notices the tracking-device around Joy's ankle.

I had noticed her daughter too.

One of the older students, doing racing-dives and more complex strokes (butterfly!) with a bunch of classmates in the long lane at the other side of the pool. Young teen, maybe, with a not-yet-a-woman-but-getting-there kind of shape. Obviously very fond of her male teacher, hanging on him noticeably -- what would have been cute in a first-grader was beginning to shade into the inappropriate for a 13-ish-year-old who didn't quite seem to have figured out the new boundaries. He was patient with her.

Yesterday in the pool observation area, another mother was sitting near me, obviously watching Joy and her teacher, the closest people in the pool. Joy's teacher nudged her to poolside, and Joy climbed out all on her own, moves that her teacher had had to help with just a couple weeks ago. Great concentration and effort.

"Hardest-working kid in the pool," I commented proudly to the other mom.

"Oh, is that your daughter?" she responded, and proceeded to amply reward my compliment-fishing.

And then she said, "Autism?"

I nodded. "Autism, and a few things more."

"My daughter's on the spectrum too. PDD-NOS. That's her in the far lane, green suit, just diving in."

Yes, that girl.

That girl had never had the one-on-one lessons that Joy has now, but her mom said that watching Joy had some very familiar feel to it. How her daughter reacted differently to the water than the other (much younger back then) kids in her class. How the sensory issues made such a difference, and then in her daughter's case the emotional part was huge too.

And now she's doing the butterfly and looking just like the other kids in class, with the slight exception of hanging just a smidge too much on her teacher. She won't likely swim on a competitive level, said mom, but she loves it and it's great exercise.

"It gets better. It really does!" she said.

I can see it from here. Joy is doing so well, we can track her progress at the pool by the week...

And yesterday she got another achievement-ribbon. I'll use the image of the one she got in February to illustrate, but the new one is like unto it -- a Level 2 / Guppy ribbon, in the "Becoming More Independent" category. Her new achievement is "Swim 3-5 Feet." Unassisted, between 2 platforms, no feet on the pool bottom.

I look forward to the day Joy can do the butterfly the full length of the pool. And if she hangs a little too much on her teacher, well, she won't be the only awesome achiever who's ever done so.

Denials and Affirmations

2011-04-02T05:51:00.000-05:00

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.

ALEC is Hazardous to Our Health Care

2011-03-28T05:43:00.000-05:00

I carried a new sign to the Capitol Square yesterday:

It says:

ALEC is hazardous to our health care - protect Medicaid & insurance mandates!

So what is ALEC? I actually had an oblique reference to it in my last post -- it's the organization that distinguished professor William Cronon wrote about so convincingly in the blogpost that caused the Wisconsin GOP to start a witch-hunt into his university e-mails two days later. One small excerpt from Cronon's writing to set up the explanation:

If it has seemed to you while watching recent debates in the legislature that many Republican members of the Senate and Assembly have already made up their minds about the bills on which they're voting, and don't have much interest in listening to arguments being made by anyone else in the room, it's probably because they did in fact make up their minds about these bills long before they entered the Capitol chambers.

ALEC is the organization that provides the text of those bills on which they have already made up their minds, marching in lock step with no room for debate. ALEC stands for the American Legislative Exchange Council (their site has been up and down since Cronon's post was published, but it is up as I type now). It's a membership organization with a secret membership list of Republican legislators and business interests. Not just anyone can join: Republican legislators can join after being vetted, paying $50 per year in dues. Businesses pay thousands of dollars for a seat at the table. Then those conservative legislators and the deep-pocket business partners sit down together and draft legislation that then shows up, with minor modifications, in state-houses across the country.

This is how, when they get majorities like they have in Wisconsin, they can move so fast and so ruthlessly. The legislation is all ready-made from out of state!

Now, as Cronon pointed out in his piece, there's nothing wrong with like-minded folks getting together and strategizing about legislative goals. On the other hand, what makes ALEC different and frightening, as Shawn Doherty of Madison's Capital Times sums up the objections, is

the corporate and wealthy interests behind ALEC (which others note include the billionaire Koch brothers) are far more organized, coordinated, and stealthy than anything we've seen before in this country.

Doherty has been doing amazing investigative work on a fast-shifting landscape on the health beat here in Wisconsin, and I hope she wins awards for it. She's the one who broke the story on the impending GOP bills I wrote about earlier this month, the ones that would smash not only the autism-insurance requirement we worked so hard so win, but also every other insurance mandate in Wisconsin as well.

Guess what? The mandate-busting bills are ALEC bills.

Doherty makes this connection via an ALEC publication called The State Legislator's Guide to Repealing Obamacare (.pdf) [alternate Google-space copy here in case the ALEC original goes down.] From Doherty's post:

Also included in ALEC's list of model legislation are proposals aiming to undo the power of health mandates, which the guide complains are "often steamrolled into existence by politically active interest groups."

That's us, friends, a politically active interest group. You better believe it. Except that we don't have the deep pockets and conservative credentials that it takes to buy a seat at the table where the legislation is being templated.

Hence the ALEC bills that are waiting to be introduced in Wisconsin, LRB0373 and LRB1529. From Doherty's post again:

This legislation, dubbed "Health Choices and Opportunities" by authors Sen. Leah Vukmir, R-Wauwatosa, and Rep. John Nygren, R-Marinette, Sen. is similar to what the ALEC guide calls the "Health Care Choice Act for States," which allows people to purchase health insurance across state lines. In 2010, according to the guide, 19 states introduced such legislation, and Wyoming enacted it.

That's what my new sign is all about. I want to see "ALEC" pop up on as many signs at the Capitol, and in as many bitter jokes, as quickly as the name "Koch" did when the funding connection and the prank call between a fake billionaire brother and Gov. Scott Walker made the news. This needs to be a well-known part of the conversation, on everyone's lips, part of the argument as to why we need to vote JoAnne Kloppenburg into the Wisconsin Supreme Court April 5, and recall the 8 eligible Republican State Senators who are forcing this ALEC legislation down our throats, and then recall Scott Walker when the time comes.

There's an interesting tension here when it comes to talking about ALEC. On the one hand, Bill Cronon did it and got a huge heavy-handed response just two days later. As a university employee myself, it makes me at least a smidge-bit nervous about blogging too, though I'm doing so early in the morning on a personal computer on my day off! But the more of us who spread the word, the harder it will be to come after us all... I am Spartacus! (There are folks at the university who are now including all the open-records-demand keywords in their sig files on every message: "Republican, Scott Walker, recall, collective bargaining, AFSCME, WEAC, rally, union, Alberta Darling, Randy Hopper, Dan Kapanke, Rob Cowles, Scott Fitzgerald, Sheila Harsdorf, Luther Olsen, Glenn Grothman, Mary Lazich, Jeff Fitzgerald, Marty Beil, Mary Bell." Just in case someone asks, y'know.)

On the other hand, I've got friends in legislative-related jobs who have known about ALEC for years. It's not as if the organization's existence and its mission are secret, or else they wouldn't have a web site, etc! Plus, again in Doherty's article, she interviewed WI Sen. Majority Leader Scott Fitzgerald, who took an almost nonchalant approach:

But so what, asks Senate Majority Leader Scott Fitzgerald, R-Juneau, when I call him about my discovery. Fitzgerald says he has been a proud member of ALEC since he first became a legislator in 1994, and is currently the Wisconsin State Chairman. State lawmakers have always turned to such national organizations for help brainstorming ideas and crafting legislation, Fitzgerald says. "These groups are about exchanging ideas between different state legislators from around the country to be sure we're not isolating ourselves in Wisconsin," he tells me.

Which is it, guys? Harmless collaboration or sinister plot? Until the open-records intimidation-demand on Prof. Cronon is withdrawn, I'm going to have to go with the latter. Especially since the legislation resulting from ALEC templates is so radically hazardous.

Which takes me back to our trip to the Capitol yesterday. This time it wasn't just me -- it was me and both daughters, Joy's first protest participation. There wasn't any formal protest planned, but these days there is a constant ongoing protest during daylight hours, a small but determined trickle of people circling the Capitol Square, carrying signs and encouraging one another in our resolve.

The following photo (a little freaky-looking with blurred faces but it was too good not to post!) was taken by a fellow protester we met on the Square, a stranger who turned out to have Mennonite connections back in my hometown Kansas community.

Keep an eye on ALEC. This story is still being written.

Keep Calm and Protest On

2011-03-26T06:22:00.000-05:00

Joy has a very useful new "word."

Actually, it's a cleverly generalized new utterance of protest.

I think it started as a "don't fence me in" kind of thing. When she encountered a door she wanted to go through, but the plastic safety-knob was foiling her, she'd demand "open" with a loud "P...puh...puh!"

That "p...puh...puh" has now become her generic noise of protest, to be used whenever she isn't getting what she wants, whether the remedy requires "open" or not. Then if we can't get her re-directed, the next step is the explosive acts we're familiar with: swatting, self/others bite attempts, pulling out her own hair though I've got it chopped down to under two inches long now.

I think I spent most of yesterday saying "p...Puh..PUH!" And it got louder in the evening.

I awoke yesterday morning to news of a blog-post by a prominent professor of history at UW-Madison. William Cronon, an even-handed, mild-mannered, non-partisan scholar, had published a magnificent blog-post the other week, detailing his findings on what organizations were involved in the flood of look-alike anti-union, anti-immigrant, anti-Medicaid, pro-big-corporation legislation that's been coming down in Wisconsin and other states. His scholarly March 15 post, Who's Really Behind Recent Republican Legislation in Wisconsin and Elsewhere? pulled the veil back on the secretive, well-financed national collaboration on the part of the Republican party that is resulting in... that which we've been protesting here.

Two days later, the Republican Party of Wisconsin set out to shut him up.

Wisconsin Republican Party headquarters served the University with a Freedom of Information Act (FOIA) request, demanding all of Cronon's university e-mails since Gov. Scott Walker took office, containing any of the words "Republican, Scott Walker, recall, collective bargaining, AFSCME, WEAC, rally, union, Alberta Darling, Randy Hopper, Dan Kapanke, Rob Cowles, Scott Fitzgerald, Sheila Harsdorf, Luther Olsen, Glenn Grothman, Mary Lazich, Jeff Fitzgerald, Marty Beil, or Mary Bell."

First they want to catch him using university e-mail for partisan political purposes, something he's way too smart to have done. But secondly, they want to intimidate Cronon and anyone else who works at the university. And thirdly, it seems clear they want to comb through all those e-mails to find some snippet that (when taken out of context) can be used to discredit and embarrass him.

Cronon's reponse to the absurd demand, Abusing Open Records to Attack Academic Freedom, was level-headed and lengthy.

So after a day stewing about this, we get the evening news. About THE BILL that was rammed through the Wisconsin legislature via dirty tricks. THE BILL that was blocked by a temporary restraining order that had us celebrating a week ago, because now it was going to have to work its way through the courts instead of being published into law on March 25 by the WI Secretary of State.

Guess what, friends. They don't give a fig for the rule of law.

They ordered the Legislative Reference Bureau, a non-partisan agency of the Wisconsin government that analyzes legislation and keeps the archive of what's been made official... to PUBLISH THE BILL INTO LAW. Even though only the Sec. of State can do that, and he's been enjoined by the courts not to do so. And then, even though the LRB and a number of others have said that this end-run does NOT make the bill law, Sen. Majority Leader Scott Fitzgerald has announced that they're going to act as if it's law anyway.

P...puh...PUH!

Once again, due to family obligations, we won't be on the Capitol Square this morning. Maybe we can take a trip there later in the day. I hope that the crowds are huge... and vocal... and continued non-violent, as we have so proudly accomplished through all these weeks despite the ratcheting up of the provocations.

Check out the lower button: Keep Calm, and Protest On.

I got these buttons on State Street the other Friday during my activist-date with JoyDad, an image that I had first seen on a portable sign at the top of Madison's State Street right near the Capitol. I loved it already without knowing its history. Now that I've looked it up, it resonates even more.

The underlying image is a poster that says Keep Calm and Carry On. The poster dates back to Britain of 1939, where (according to a well-sourced Wikipedia article) it was produced by the British government to raise morale under the threat of invasion. The poster was re-discovered eleven years ago and has been distributed widely since then.

Now, with the substitution of the word "Protest" for "Carry," it has become an iconic image of our Madison response. In many ways, it feels as if Wisconsin has been invaded by a hostile occupying force -- not through bombing but through stealth and lies and corporate financing.

Keep Calm, and Protest On. Here are the crucial upcoming voting-related priorities:

-- Vote JoAnne Kloppenburg for Wisconsin Supreme Court April 5.
-- Volunteer or donate to the recall efforts for the 8 eligible Republican state senators.

We won't bite. We won't pull hair, tempting as it is. We will keep calm, we will carry on, we will protest on. And we will win -- their very desperation is the best indication.

Break!

2011-03-22T05:48:00.001-05:00

There's some wonderful stuff going on with Joy, beyond the birthday party and swimming I talked about in the last post.

I haven't yet told you about the birthday card she decorated for her classmate. Poor Joy has not had a happy relationship with writing-utensils over the years. We keep trying to get her to make marks on paper, and she would rather do anything else -- crumpling the paper ranks much higher on her preference list than drawing on it. Even so, I've made her "sign" every card that's gone out under her name or from the family, usually a hand-over-hand mark made under protest.

But they've been working at school with drawing-on-paper. And look what she produced when I put marker in hand and held down the birthday card for her to "sign":

All I did was hold the paper down. She did the spirals herself, no hand-over-hand involved except to help get the marker-cap back on.

But wait, there's more.

In our computer-bookmarks for years has been a fun baby-game site called Kneebouncers. The games are super-easy and work by just clicking on the screen or hitting any key. Unfortunately they recently went to a paid-subscription model, but there are still a couple of freebies, and we made a great breakthrough with one of those this weekend. The game is called Peek-a-bouncer, and to make it work, you have to click-and-hold (or push any key and hold). Then the curtains slide open and you see a funny face and a voice intones "peek-a-boo!"

Joy always tended to get frustrated with this game, because with the other games, all she had to do was a quick click to make things happen. In Peek-a-bouncer, if you just quick-click, the curtains barely budge and the voice gets cut off.

But on Sunday, after much hand-over-hand play, where I'd help her hold the mouse-button and I'd say the words "push-and-hold!" in the same tone as the "peek-a-boo!" -- she actually began to push-and-hold on her own. Experimenting with how much hold it took to create how much effect.

Oh, my goodness.

And then!

Last night Joy's newest barista (autism line-therapist) got Joy to turn a difficult evening around quite dramatically. Joy had been having a rough time, didn't want to be in any of our standard rooms, the barista was trying all the favorite stuff to no avail. They were working in Joy's bedroom when the barista as a last-ditch effort thought to ask her: "Break?" And Joy understood immediately, and dived on her own into her bed-tent, where she immediately set to work on putting herself back together. Over the course of 5 minutes in the tent, Joy stimmed herself from angrily-overwrought into pleasant-mood. The rest of the session then took place in pleasant-mood mode.

This is something we're going to USE. Again: Oh, my goodness.

[Bet you thought from the title of this post that JoyMama was going to be taking a bloggy break. Heh. Not a chance. You're stuck with me.]

Two Good Days

2011-03-20T07:30:00.002-05:00

Friday was a good day.

JoyDad and I both had the day off. Unpaid, since it was a required furlough day for me and he took a "moveable" furlough day. But still, a day off for the both of us, with both kids in school.

Several hours into our spring-cleaning & online activism, we got some lovely news.

The so-called "budget repair" law, passed in an undemocratic sneak-attack the previous week, had been put on hold by a Dane County judge!

Judge MaryAnn Sumi of the Dane County court agreed with Dane County District Attorney Ismael Ozanne that the apparent violation of Wisconsin's open meetings law was sufficiently serious to warrant a temporary restraining order, preventing the law from going into effect until the court can hold a full hearing the week of March 28. (The law was scheduled to be published March 25, to take effect March 26).

JoyDad and I decided to go downtown and celebrate. After all, if the law were to delay our paycheck-whacks even one week, that's over $100 we'd have available again to pump back into the local economy!

So we went to the Capitol around noon. I carried a sign that thanked the judge on one side, and on the other said "Rule Against the Bill!" Got lots of thumbs-up and car honks. (In Madison these days, you don't just lay on the horn to support the protesters. Instead, you tap the horn to the cadence of the chant: "This is what democracy looks like!") We walked through the Capitol, and then joined a group singing protest songs at the top of State Street for a while.

Then we walked down State Street and found a restaurant with supportive signs in the windows, and had a lovely lunch. We made sure to tell them exactly why we felt able to do so, and why we chose them in particular.

And the sun was shining, and our crocuses were blooming in the flowerbed, and we felt some of the first real hope we've felt in an entire month of unrelenting bad news. Not that this is over, by any means. The majority party will appeal every step of the way, probably up to the Wisconsin Supreme Court if it gets that far. (Vote JoAnne Kloppenburg for Wisconsin Supreme Court Justice April 5!) They can even take up the bill again from scratch, give appropriate notice, and presumably pass it again. But the public outcry would be immense, it would be an admission that they didn't do it right the first time, and the protest movement would only gain new steam.

And then! I took Joy to her swimming lesson after school, which is just about her favorite part of the week. I got to see her hoist herself out of the pool on her own, at the place where the water was too deep to get a boost from the bottom. I got to see her propel herself from one platform to another one five feet away, all under her own steam. I got to see her blow bubbles in the water (in between drinking it.) And I didn't even have to do a big clean up in the locker room of the generally-inevitable laxative effects of water-play -- she waited till later that evening!!

Saturday, too, was a good day.

Joy and I attended a birthday party for one of her classmates in the afternoon, an invite-the-whole-class affair. It was held at the apartment-dwelling of the birthday girl, probably about 10 kids in a small space with hard surfaces. The noise was pretty intense.

Joy, however, hung in remarkably well. We had a good 20 minutes before she began a big protest, and then we were able to go into the hall and walk the stairs and laundry-room for a while and calm down enough for a second try. I had provided ribbons for her own use, so the wrapped packages wouldn't be too much a temptation.

Since it was all classmates, they are well-acquainted with spending time with her and were very sweet. The birthday girl made sure that Joy got a turn with the blindfold from the pin-the-tail game -- we turned it into a peek-a-boo game, and then Joy did manage to take a turn sticking a tail onto the donkey (after everyone else was done, and without blindfold or spin.) At a later point I asked another little girl if Joy could play with some discarded paper from an unwrapped present. Not only did she bring that paper over, a minute later she came around again bearing a curly ribbon for Joy's use!

We made it through over an hour in total, long enough to enjoy some cake. Joy wasn't the only kid who cried during that time, and none of the other crying was caused by her. And as we left, there was another kid who was also overwhelmed by the noise -- the hostess was just calling his mom to come pick him up.

SO included. It felt great.

One more "good" to share.

Rose and JoyDad got to take a turn at the Capitol while Joy & I were at the party, but I got my turn in the evening. I joined an interfaith vigil that meets every night now for an hour at the Capitol, 7-8pm.

We weren't a big group, and we weren't allowed to light our candles -- a couple of law-enforcement fellows very nicely told us that they had their orders regarding the defacing qualities of dripping wax. (One of our number spoke up, "That's OK, these guys are public workers, they're on our side!" and got some discreet grins and nods from the cops.)

We held signs, and sang. Last night's organizers had also printed out brightly-colored slips of paper with relevant quotes from various scriptures and philosophers and other leaders and thinkers. We took turns reading quotes and then taped them into a collage. I also took some chalk and put one of the quotes onto the pavement:
"There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest." — Elie Wiesel

Among our number were two boys on the autism spectrum. One of them played a hand drum enthusiastically as we sang. He wrote his own message in chalk to the Governor on the Capitol's very front step after the vigil, just as I was leaving. I believe the message was taking a turn for the rude... but y'know, this young man has the right. He's among the ones who stand to lose the most.

Two very good days.

Happy 3.14!

2011-03-14T09:46:00.002-05:00

In honor of Daniel Tammet, on the autism spectrum and holder of the European record for reciting the digits of pi from memory.

For your entertainment today, a song of pi. (Do give it a listen -- it's rather hypnotic!)

Happy Pi Day!

Update: Here's another musical rendition of pi, on YouTube even!

3.141592653589793238462643383279502884197169399375105820974944592307816406286208998628034825342117067982148086513282306647093844609550582231725359408128481117450284102701938521105559644622948954930381964428810975665933446128475648233786783165271201909145648566923460348610454326648213393607260249141273724587006606315588174881520920962829254091715364367892590360011330530548820466521384146951941511609...

Medicaid and What Passed the WI Senate Last Night

2011-03-10T06:27:00.003-06:00

Rose and I went to the Capitol for an hour last night. We stood with our signs as the crowd demanded to be let in and speak the outrage over the bill that passed the Wisconsin Senate last night. In a nutshell, the Republicans in the Senate replaced the so-called "budget repair bill" with just the supposedly non-fiscal items from the bill, so they didn't need a budget-level quorum to go ahead and have the vote. That's right folks, the "budget-repair" bill that passed last night is the non-budgetary stuff. (Shame on them. Shame.)

They intend to have the Assembly pass the bill this morning. They have the votes. Then the governor will sign it, and collective bargaining as we know it for public employees in the state of Wisconsin will be gone.

A version of the provisions surrounding rule-making on Medicaid was in the bill. However, it is not the full outrage that was in the original budget-repair bill. It appears they have blinked at least so far as to leave the standard administrative-rule making process intact. They did not give themselves the power to do it behind closed doors -- though the outlines of what they're now going to do in broad daylight are ugly enough.

Here's a quote from the Save BadgerCare Coalition Facebook page, from Jon Peacock of the Wisconsin Council on Children and Families:

the new version doesn’t give DHS any new rulemaking authority, yet they can still use rules to supersede nearly all of the portions of MA law, and they could probably use the existing emergency rule authority, but they would have to follow up by using the regular rulemaking authority, which improves opportunity for public input and more legislative oversight.

For anyone policy-wonky enough to be wondering "why do they need to do all this? Don't departments usually have broad rule-making authority anyway?" The answer lies in another measure that was passed by the Walker administration earlier in this "special session." In that measure, the governor increased his own power over administrative rule-making, decreasing the power of the departments. These provisions on Medicaid -- if I am reading correctly -- are now giving back that power to the Department of Health Services in particular.

[UPDATE: I should also highlight the important part of Jon Peacock's information about using the rules to supersede Medicaid-related statute (laws). This part is not the way things normally work in Wisconsin, and is actually quite a sweeping new authority. Ordinarily the Constitution is the top authority, statutes cannot conflict with the Constitution, and rules cannot conflict with statutes or the Constitution. This bill -- soon to be law -- makes an exception for new emergency rules about Medicaid, allowing them to trump statute. This is still undemocratic, it's still huge, and it's not well understood.]

Oh, and the bill also includes some tricky maneuvering that will repeal the powers given to the DHS regarding Medicaid, as of 1/1/2015. Which marks the end of the Walker administration. If he lasts that long.

I have added links to the text of the bills on my WI Budget 2011: Medicaid page. Keep checking there for further links.

A few more things to point out.

If Walker is recalled, and a Democratic governor is elected, that new governor will be able to make appointments to head all the agencies. Which would mean a Democratic-friendly replacement for DHS's Dennis Smith.
Pledge to Recall Scott Walker -- complete with donation form!

The first opportunity to stem this rising tide of damage will be to recall the 8 eligible Republican Wisconsin State Senators.
Sign up to help with the Senatorial Recall
Donate to Recall the Republican 8

On April 5, we will have the opportunity at the ballot box to reverse the conservative majority in the Wisconsin Supreme Court. This will be immensely important as court challenges to various actions of the Walker administration wend their way to the high court. Vote JoAnne Kloppenburg!

Wear black today in solidarity (Thursday 3/10/2011). Contact your legislators. And come down to the Capitol if you can. There were protests around the clock last night.

Shame on the Walker administration. Shame.

Now They're Coming For Her Autism Insurance

2011-03-07T18:39:00.001-06:00

First, they came for Joy's parents' paychecks.
[The increased benefits contribution in the so-called "budget repair bill" is equivalent to a 150% income tax hike for us, both state workers.]

Then, they came for her education.
[The proposed state budget contains close to $900 million in cuts to state aids for public schooling.]

Then, they came for her medical assistance.
[The $500 million Medicaid cut in the budget bill stands to be doubled by the loss in matching funds from the federal government, which would add up to a billion in unspecified Medicaid cuts.]

Now, they're coming for her autism insurance.

I've chronicled on this blog in some detail the years of struggle to force insurers to cover autism-related treatments here in Wisconsin. It took years of patient long-term advocacy (with some good old-fashioned hollering thrown in), but finally in 2009 it became law: insurers in Wisconsin were required to cover evidence-based autism-related treatments.

But now two new bills are circulating, expected to be introduced in the next week or two, that would undermine autism insurance and a whole series of other insurance requirements. Orwellianly-dubbed the "Health Choices and Opportunities" bills, they would set in motion a chain of events that would eventually allow the insurance commissioner to waive the mandates we fought so long and hard to put in place.

The ten hours per week of autism therapy that Joy now receives are covered by our insurance. This is coverage that her (currently-at-risk) Medicaid programs do not provide.

I am feeling bombarded.

And yet I know that as members of the middle class, with two cars and a modest home of our own and a job-and-a-half, we're still going to be relatively OK.

What of those who aren't OK now, or who are hanging onto OK by their fingernails, who will be far-far-less OK if all this passes?

This has all been sprung on the unsuspecting people of Wisconsin in the PAST THREE WEEKS.

Please help us spread the word, and keep us in your prayers.

=====
OK, here's the political action steps, for those who are eligible and feel so moved. I never thought I'd be this openly partisan on this blog. But it's THAT important.

Join Russ Feingold's Progressives United political action committee (you don't have to live in Wisconsin to do this one!)
Sign up to be contacted to recall Governor Scott Walker once he's been in office for a year.
Visit Recall the Republican 8, a site dedicated to recalling 8 Wisconsin state senators. (I was hesitant about this at first; but they didn't run openly on this extreme an agenda.)
Vote for JoAnne Kloppenburg on April 5 for the Wisconsin State Supreme Court.

Random Thoughts

2011-03-05T05:48:00.000-06:00

It hasn't been the kind of week that serves coherence. So, today on Elvis Sightings, a heaping helping of stream-of-consciousness.

We all went to Grandma Judy's wake last night. It was so good to be with family, and to take part in this shared ritual of closure. Neither Rose nor Joy had ever encountered an open casket before. But Rose bravely went up to the front to "pay her respects" as we had discussed with her beforehand. Joy went up a little later in my arms. I think she might have been a little confused, as she reached out to Grandma Judy with an uncertain smile. I told her that it was time to say "bye-bye." She gave a small wave and an adorable spoken "bye-bye."
Goodbyes are so hard.
We had brought all sorts of tools and tricks to get the girls through the evening, from a portable DVD player & Baby Einstein to Rose's sketchpad and her little ZhuZhu-pet video game. But it was AuntieS who saved the day. She brought a brand-new travel set of the game Guess Who? that Rose could play with her cousin. For Joy, she brought one of those soft plastic bath-scrubby-poufs with a terry-cloth ducky in the middle. Once again AuntieS scored big, as she did with the curly-ribbons at Thanksgiving time. Joy spent the rest of the evening watching video and happily shredding the bath-pouf. Simply perfect.
JoyDad will represent our little family today at the memorial service and burial. It didn't make sense to try to chivvy the girls through a day as long as this one will be. I'll be there in spirit, though.
This all comes at the end of a long, hard week. It's been on my heart to join the amazing huge creative peaceful protests at the Capitol building, and re-fill myself with their hope and energy, but I've been unable for over a week. Schedule is part of it, and sickness even more. Both Rose and Joy were home from school most of the week fighting the flu, and I was trying to care for them and fight pneumonia myself. Thank heaven for antibiotics (for me), and for speedy recovery (for all of us.)
The events of the day in Wisconsin continue to seep into most everything we do. When I went to the deli counter last weekend, wearing my "Save Medicaid" sticker on my coat, the guy at the counter asked "So, what can I get for you? [pause] Besides a new governor?" When I went to the doctor with my complaint of sleeping difficulty and on-rushing bronchial issues, he asked me whether there was a movement to recall this governor who has pushed forward this extreme agenda so very far in excess of anything he'd campaigned on. I left with prescriptions for the aforementioned antibiotics, a sleep aid, and the doctor's personal e-mail address -- promising to send him the website address where he could add his name to the pre-recall database at http://www.unitedwisconsin.com/. (In this state an official must hold office at least a year before a recall can take place; at that time, there is a 60-day window to collect sufficient signatures.)
Healthcare workers and professionals are marching in support of Medicaid in Wisconsin today (Saturday), starting at 11am on campus at Library Mall. I wish I could join them, but I'm on childcare today. I'll be thinking of them, and looking forward to seeing pictures.
I was on childcare last Saturday as well, while JoyDad and brothers were helping GrampaK get some things taken care of. Let me be clear, I am ever-so-willing to hold up my end and do what needs to be done! but last weekend it meant that I ended up forgoing the opportunity to be in this political ad: http://www.youtube.com/watch?v=ecsX7HxRork. I have not embedded the ad-video here because it is highly partisan, and frames the events in Wisconsin as a "war," terminology that I would personally prefer to avoid. But it's a powerful piece, and I would very much have liked to add my story and get a mention of Medicaid into the ad, something that did not happen in my absence.
However, it's not as if I'm lacking a voice this week. I've had the opportunity to have some of my writing published on a national level (under my real name, so no link here, sorry!) And that feels good.
After several weeks of high intensity, I do feel now that the initial frantic urgency of "Medicaid emergency and nobody even knows!" is receding. People do know now, and many other voices are being heard. It's time to take a deep breath, and move things to a level more manageable for the longer term.
Right after I write just one more blogpost / Facebook status / protest letter...

In Memory of Grandma Judy

2011-03-02T05:37:00.000-06:00

"GrammaJ" left this world for the next on Monday afternoon, February 28.

We will miss her so very much.

Grandma Judy
1941-2011

Learning Curve

2011-02-28T05:55:00.003-06:00

"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."

Hostage-Taking

2011-02-25T06:13:00.004-06:00

My heart is aching this morning.

I awoke to the news that the Wisconsin Assembly had passed the "budget repair" bill, unamended, in a sudden rush vote after midnight last night. They ran the roll-call so quickly that not all legislators even had the chance to push their button to register a vote.

Then I saw this article in Madison's Capital Times:
Walker warns Medicaid payments to nursing homes could be delayed if bill not passed

Governor Scott Walker of Wisconsin is now holding senior Medicaid recipients hostage over the passage of a bill (which can no longer be amended -- the struggle is now to scrap it altogether) that would turn future decisions on Medicaid over to his own appointee Dennis Smith, who has taken positions hostile to Medicaid. His aim is to force the return of Democratic Senators who have left the state, to complete the forcing of this bill upon the state of Wisconsin.

This is wrong. This is so very wrong.

P.S. As pointed out by Suze in the comments, there's an inspiring and heartbreaking Capital Times story online today:
Disability rights activists stage protest inside state GOP headquarters

New Resource on Medicaid in the 2011 WI Budget

2011-02-24T06:16:00.002-06:00

"It is not incumbent upon you to finish the task.
Yet, you are not free to desist from it."

-- Rabbi Tarfon, Talmud, Pirkei Avot 2:21

This becoming-an-activist stuff is tiring work. I will have to learn to pace myself. And the task is surely not mine to finish, I know that.

But for now, there is a great urgency for me around the threat to Medicaid in Wisconsin in the Walker budget proposal.

I've felt called to create a new resource, to pull things together in a single place, on a new page here at Elvis Sightings. You'll notice it in the top tabs on the blog: WI Budget 2011: Medicaid.

On this new page, you'll find the following types of links:
-- My Elvis Sightings posts on the issue
-- Printable flyers
-- Sites for Activism Alerts
-- Analysis of the Budget Repair Bill
-- Overview articles from the Capital Times
-- Letters to the editor (to help you write your own!)
-- TV news coverage
-- Additional news & opinion

For today, I'll leave you with my yesterday's Facebook activism post (slightly lengthened, since I've got the room):

DIY WI Medicaid activism -- print factsheet copies.
Make large sign: "Take Medicaid out of the Bill! (Didn't know it was in? Ask me more!)"
Make smaller signs with just the first phrase.
Stand in Rotunda [or whatever rally in Wisconsin] with the big sign [I actually used my big pink sign], and pass out flyers & signs to those who approach. Highly empowering!

Give it a try?

Praying With Our Feet -- and Our Magic Markers

2011-02-22T06:00:00.001-06:00

"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.

Medicaid in Wisconsin: What's At Stake? How Can I Help?

2011-02-21T06:28:00.002-06:00

Rose and I held signs at the front of the room at a press conference yesterday. The event was held to draw attention to the stealth attack on Wisconsin Medicaid in Governor Scott Walker's "budget-repair" bill. Several hundred people overflowed the room, braving freezing rain to come out and show support.

"Stealth attack" is not too strong a term. As I've written before, the Medicaid-related part of the bill is flying almost entirely under the radar, overshadowed by the outrage over the attempt to break public-employee unions (including public school teachers & librarians, setting the stage for immense cuts in education to come.) Now that events in Wisconsin have hit the national news, the story line is still all about the unions.

There's an excellent new article in the Capital Times called "Why Such Little Outcry Over Bill's Impact on Medicaid Programs?" (The same reporter interviewed Rose after the press event. We shall see...) It's been a complex story to try & tell, because the upcoming cuts aren't actually in the current bill. What's in the bill is the unprecendented and undemocratic authority to make future cuts behind closed doors, with neither legislative oversight nor public input.

Now that the press event has given me an eagle-eye view of who all could be affected, I'm more appalled and worried than ever!

Medicaid, otherwise known as Medical Assistance (MA), provides a health-care and community support safety net for the most vulnerable in our state -- seniors, people with disabilities, people with mental illness, people with low incomes -- using a combination of state and federal funding. Over 1.1 million people in Wisconsin, around 20% of our state's population, use some form of Medicaid. Numbers have been on the rise due to the impact of the recession.

The newly-formed Medicaid Matters Alliance, the organizers of the press event, provided the following information, which I quote here directly with a few asides:

• 775,000 children and adults have basic medical coverage in BadgerCare
• 90,000 Wisconsin children and adults with severe mental illness use Medicaid services
• 9800 children and young adults (0-21) with severe disabilities utilize Medicaid community based supports and medical coverage [Personal note -- Joy is among this number]
• 20,500 people with developmental and physical disabilities stay independent at home and in their communities with Medicaid funded supports [Personal note -- Joy will be among this number in the future, if the program is not eviscerated]
• 18,000 seniors stay independent at home and in their communities with help from Medicaid
• 90,000 Wisconsin seniors rely on SeniorCare for affordable prescription drugs

We don't know yet who amoung those 1.1 million will be targeted in the upcoming cuts, nor to what extent those targeted will be hit -- and if the bill passes, we won't know until after the cuts have been made and it's a done deal.

The speakers at the event were varied, passionate, compelling. We heard from:

-- A retiree for whom Medicaid is the only thing that has allowed her to scrape by and live in her own home, after the recession decimated her retirement savings.

-- a woman who has spent half her life with quadriplegia due to a car accident, whose active and productive life in the community is at risk (and who would rather die than be warehoused in a nursing home)

-- several people for whom Medicaid is a lifeline for aid with mental illness issues, either for themselves or their children

-- a woman who lived with an abusive partner for 12 years, who could not have taken care of her injuries without MA, nor could she have left him without MA healthcare for her children (2 of whom have disabilities)

And the stories kept coming. This has the potential to devastate SO many people, each with their own story that has brought them to need medical-assistance help.

There should be thousands of people storming the Capitol on this issue alone!

But the word is only starting to spread. And the people whom this most affects -- seniors, people with disabilities, people with mental illness, people with low incomes -- are not the ones with the resources to be easily able to hit the streets.

And if Governor Walker had his way, the stealth attack on Medicaid would have already been passed by now.

How You Can Help

People in Wisconsin: Governor Walker is saying that he's only hearing from people who support his position. Contact him and tell him that you oppose the undemocratic Medicaid process changes, and that they need to be removed from the bill. 608-266-1212, or govgeneral@wisconsin.gov.

There are four Wisconsin state senators who have yet to state a position on the bill. If you live in their districts, contact them with the same message as for Gov. Walker -- or if you know anyone who does live in their districts, get them to make the contacts! Click the links for contact information:
-- Sen. Dale Schultz of Richland Center, District 17
-- Sen. Michael Ellis of Neenah, District 19
-- Sen. Sheila Harsdorf of River Falls, District 10
-- Sen. Robert Cowles of Green Bay, District 2

For Anyone: To get updates directly from the coalition fighting to preserve our voice on Medicaid in Wisconsin, sign up at
-- "Like" the Save BadgerCare Coalition on Facebook or visit their website.
-- Join the Medicare Matters Alliance Google Group

Anywhere in the US that the Wisconsin story is being reported at all, a letter to the editor of your local paper would be a welcome help.

And finally, a fun morale-booster action step: Buy pizza for the protesters! Ian's Pizza by the Slice just off the Capitol Square, 608-257-9248, has been getting orders in from all over the country (& world). JoyDad and Rose and I availed ourselves of the pizza-generosity after the press event. Good stuff, great morale-booster!

Thank you so much for all you do. Keep spreading the word, friends!

P.S. TinyURL for this post is http://tinyurl.com/6k3hro3 -- please tweet widely!

(Tomorrow's post: Joy's friends make signs on her behalf)

Gathering in Support of WI Medicaid, with a Link Roundup

2011-02-19T05:17:00.002-06:00

First things first: There's a gathering/rally/press event on Sunday 2/20, 1pm, to bring much-needed attention to the Medicaid implications of the Walker Budget Repair bill. The event is a few blocks from the Capitol Square in Madison at the Madison Senior Center, 330 West Mifflin (click the link for a Google Map.)

The entire press release is appended to the bottom of this post. JoyDad, Rose and I plan to be there, and hope to see many-many others there as well!

I'm also including here a list of some central background links on Medicaid and budget repair -- a one-stop shop, as it were.

For an excellent summary of the issue, see:
Budget repair bill gives Walker free hand to revamp, cut Medicaid programs
(The Capital Times, 2/14/2011)

For a glimpse of the potential court battle if this passes, see:
State attorney said Walker's Medicaid plan raised "potential constitutional issues" (The Capital Times, 2/15/2011)

[Update 2/21] To read more about the lack of awareness (both in Wisconsin and nationally) about the Medicaid issue, see:
Why Such Little Outcry Over Bill's Impact on Medicaid Programs? (The Capital Times, 2/20/2011)

For a summary analysis of the bill from the non-partisan Legislative Fiscal Bureau, see pages 8 & 9 of the following:
2/14/2011 LFB Memo on Budget Adjustment Legislation (.pdf)

Autism-related Press Releases
Autism Society of Wisconsin: Sweeping shift of authority for setting Medicaid policy threatens Medicaid programs, including autism services. (2/18/2011, .pdf)
Autism Society of Greater Madison: Budget Repair bill a threat to autism services
(2/18/2011)

A couple of contact-your-legislator Action Alerts:
From Access to Independence: Budget Repair Bill should not Limit the Power of People with Disabilities and their Families to Provide Input!
From DAWN News Service: Take Medicaid Out of the Budget Repair Bill

And the latest status of the bill, as of early-morning Sat. 2/19:
-- It has passed the Joint Finance Committee, with the addition of an amendment that "sunsets" the Medicaid-related process changes on Jan. 1, 2015 -- which is the end of Gov. Walker's current term, preventing any new administration from using the same ugly undemocratic process to change everything back. (It seems that the emergency only lasts as long as the Walker administration?)
-- The State Assembly did not vote on Friday, but adjourned till Tuesday.
-- The State Senate is currently unable to vote, since all the minority-party state senators have crossed state lines in protest of the lack of conversation/negotiation with Governor Walker and the incredibly rushed timeline for such controversial far-reaching changes. The Senate cannot vote, due to lack of quorum, until at least one of them returns. (Stay strong in your undisclosed location/s, Senators, and thank you for your courage!)

And finally, a Joy-story to tell.

Regular readers will remember that Joy re-started swimming lessons this January. After she had a wonderful first-lesson with a new teacher, that teacher left the swim school. We were reassigned to someone who didn't connect with Joy for the second-lesson. Then we had the chance to switch to yet a third teacher, who happens to be the same one with whom Joy had her first wonderful swimming-lesson experiences back in 2008.

Joy has now had two lessons with her third/original teacher. She is responding enthusiastically. I learned yesterday that the swim school has a new approach -- in addition to the report cards at the end of the session, they now give ribbons to mark when a swimmer accomplishes each skill in their level.

Joy got the following ribbon yesterday (it's really a neon-yellow with gold letters):

Note the Guppy logo! Woo hoo!

I look forward to being able to step back from blogging the politics of Governor Walker's disastrous budget, and tell more Joy-stories, but I'm also pretty much the only one I know who's blogging this part of the story, so it's a personal mission with me to keep the information flowing. I do plan to take a blogging Sabbath for an upcoming day here, take a deep breath, relax at least a little. But I hope to see folks at the event on Sunday afternoon, even if it's ice-and-snowing!

===================
Press Event to Support Wisconsin Medicaid and Raise the Voices of Working Families, Older Adults, People with Disabilities and Others with a Stake in Wisconsin’s Health

Sunday, February 20, 2011 1:00 pm
Madison Senior Center, 330 West Mifflin, Madison, Wisconsin (Google Map)

What: A press event to raise awareness of what’s at stake for recipients of Medicaid – including BadgerCare, SeniorCare, Family Care, children’s waivers and other vital programs in the Governor’s Budget Repair Bill.

When: Sunday, February 20, 2011 1:00pm

Where: Madison Senior Center, 330 West Mifflin, Madison, Wisconsin

Who: The Save BadgerCare Coalition and the Save Medicaid Coalition that includes a broad and diverse alliance of advocates for public health, disability rights, women’s health, the aging community, children’s health along with working individuals and families that depend on Medicaid including BadgerCare for their health, well-being and economic security.

Background: The Budget Repair Bill, even as amended by the Joint Finance Committee, threatens the future of Wisconsin ’s Medicaid programs that provide critical supports to more than 1.1 million people in the state. The bill gives sweeping authority to the Department of Health Services (DHS) to enact “emergency rules” that could significantly change the Medicaid programs and reduce BadgerCare eligibility for children, parents and uninsured adults; or reduce benefits in programs that serve older adults and persons with disabilities; and change co-pays and premiums without legislative oversight or any public input, which could have dire consequences for Wisconsin residents.

These significant changes to the administration of Wisconsin’s Medicaid programs are in danger of being overshadowed by the proposal’s other provisions which involve the rights of public employees. The public needs to be aware of the implications this bill will have for all those who rely on Medicaid; and that changes made today will have dire consequences for years to come that should not be underestimated.

========
P.S. TinyURL for this post is http://tinyurl.com/646k42q -- please tweet widely!

In the Capitol Rotunda. With a Bullhorn.

2011-02-18T06:20:00.001-06:00

My protest sign and I got our democracy on at the Capitol last night, to spread the word about the Wisconsin budget-repair bill's assault on Medical Assistance.

Here's the text from the sign as held by JoyDad in the photo. It says:

Did you know? This bill gives unchecked power to gut Medicaid with zero public input to a Medicad-hater you've never heard of!*
Ask me more...
*DHS Secretary Dennis Smith

As outlined in an earlier post, Smith is the new secretary for the Wisconsin Department of Health Services, who has advocated that states should drop Medicaid entirely. The bill would give him sweeping powers to change Medicaid without public input.

I couldn't get down to the Capitol until after Joy went to bed last night. The schools are closed as the teachers take their consciences to the street, an action that JoyDad and I support even though it's been a challenge for Joy. The change in routine comes hard, not to mention having to deal with preoccupied parents, so she's had a short fuse and is really giving us a run for our money.

So my sign and I went downtown and the first thing that happened was, we got on national TV. The Ed Schultz show on MSNBC (9pm Central time) has been broadcasting live from Madison, doing a fantastic job of covering the protests and connecting the dots from Wisconsin to the corporate-funded effort to break public-employee unions nationwide. But he hasn't spoken about the Medical Assistance issue, so my sign and I went to see if we could be a presence. Alas, I landed on the wrong side of the crowd to be in the primary crowd-shots. But the people in the crowd where I landed let me through to the front line once they saw my sign -- "This is an important sign, let her through, we've got to let people know!" My big pink sign and I got a direct crowd-shot during the part of the show where Ed was talking with a state senator from Ohio, where the assault on the unions is now underway as well. JoyDad reports that the sign half-hid my face... but that's OK, I was holding it up on purpose so the camera could see.

I was on the right side of the stage to get a word with the producer of Schultz' show. I asked him if the Medicaid issue would be covered, and got a "no." Which I understand -- as I said, they're doing a great job of what they're doing. But perhaps Rachel Maddow's show might be willing to range more broadly...

ACTION STEP:
If you feel so moved, contact Rachel Maddow (Rachel@msnbc.com) and ask her to run a segment on the assault on Medical Assistance in Wisconsin. Send her a link to the story from the Capital Times at http://tinyurl.com/45qn78f
or send her to this blog!

I also got a chance to thank John Nichols of the Capital Times for their fine coverage of the issue -- but it needs to go national.

After the show, Ed himself came down to visit our part of the crowd. I got his autograph on my sign!

Then my newly-autographed sign and I went into the Capitol Rotunda, where I met a friend of mine. By this time it was well after 10, but the rotunda was full of fired-up protesters, led by students who took turns standing on a barrel in the center of the Rotunda to lead chants and keep the energy going. My friend offered me a ride home (since I'd come on the bus, which is also under attack in this bill), so I was free to stay and talk to people.

The sign, word-overload and all, did a great job bringing folks to talk to me, who had no idea about the Medicaid issues. I was able to tell the story to a fellow who happened to be in a major education-related organization, who promised to spread the word widely to educators in this state who don't yet know.

Then a young woman popped out of the crowd to see my sign and ask questions. When she heard my explanation, she was horrified. And then she said, "Can you tell them (gesturing to the crowd) about this?" Before I knew it, I was being led to the barrel in the center of the Rotunda and handed the bullhorn.

The crowd was amazing. They had a mutually agreed-upon signal for "quiet down, someone needs to talk," so the two-raised-fingers peace sign popped up on hundreds of hands and they stopped the drums and jumping to hear me speak. And I told them, in short phrases, what the bill says about Medicaid. What the bill does to public participation on future changes to Medicaid. Who Dennis Smith is, and why it's so dangerous to give him this power. Where to go for more information.

Hundreds, maybe a thousand? activists at the Capitol now know that the assault on Medicaid must be removed from this bill.

Keep spreading the word, everyone! Keep calling & e-mailing your legislators, if you live in Wisconsin. Contact the White House, tell the president that we need his support here in Wisconsin. Come to the Capitol if you can. This is too important to stop now!

You can also "like" Elvis Sightings on Facebook in the right-hand sidebar to follow new posts. Only a part of my writing has been political, but right now this is where I get to spread the word.

(To my regular readers: JoyMama, standing on a barrel, in the Capitol Rotunda, at 11pm, with a bullhorn. Who would have thought?)

P.S. TinyURL for this post is http://tinyurl.com/5udd5s6 -- please tweet widely.

Budget Repair and "The Waiver"

2011-02-17T06:14:00.002-06:00

In autism circles in Wisconsin, it's often (and not-quite-accurately) referred to as "The Autism Waiver."

It's a section within a the Children's Long-Term Supports (CLTS) Waiver, allowing Wisconsin to use Medicaid dollars for intensive autism treatment.

My daughter received two years of intensive autism therapy through the autism section of the CLTS waiver and now has funding available through a different section of the waiver for things like respite, home modifications (like a plexiglass layer on our picture window so she doesn't bang her head through it), and more. The postive impact on her progress and on our lives has been astonishing.

"The Waiver" is subject to be changed/slashed without notice or hearing if the Walker budget-repair bill passes -- and it just passed the Joint Finance Committee last night, along party lines.

I wrote yesterday about the process part of how the cuts could be made. Today I want to emphasize that the intensive autism therapies are absolutely a part of this, even if the bill doesn't mention them by name.

Here's what kind of changes the Walker appointees in the Wisconsin Department of Health services would be empowered to make to MA and MA Waivers, affecting the autism community AND the broader disability community AND people with low incomes.

-- cost sharing could go up to the full extent allowed by federal law, and if people couldn't pay, they could be denied services.
-- modify existing benefits (as much as they want, as far as I can see!)
-- change eligibility standards
-- revise how providers get reimbursed
-- and more!

Again, as I wrote yesterday -- after the bill passes, this can all happen without public hearing, without public notice.

This analysis comes from a summary of the bill released by the non-partisan Legislative Fiscal Bureau on Tuesday, on page 8 & 9.

The version that passed the Joint Finance Committee was amended to sunset the power to make these sweeping cuts by emergency rule: They'll only be able to work this way until January 2015. When Scott Walker's current term comes to an end. So any new administration would not be able to use the new emergency-rule process to undo the damage.

You should also be aware that the new Secretary of the Department of Health Services, Dennis Smith, is no friend of Medicaid. He has written in the past, during his tenure with the Heritage Foundation, advocating that states should DROP MEDICAID ENTIRELY. This is who will be in charge of the changes.

Time is short. The bill could pass within days, and the only issue that's making the news, that most people know about, is the union-busting part. Even if the unions are saved -- which I surely hope happens! -- the assault on Medical Assistance and the MA Waivers will go through untouched unless somebody starts noticing.

Make some noise, people! This is HUGE and it's happening RIGHT NOW!

P.S. The TinyURL for this post is http://tinyurl.com/4cnqmyx -- please tweet widely.

===========
Reiterating my new disclaimer (though it's always been true): I am expressing my own personal opinions, which are not to be construed as representative of any organizations or associations to which I may belong.

Wisconsin Attack on Medical Assistance (and Democracy)

2011-02-16T06:07:00.007-06:00

For years, advocates in Wisconsin have been working to make life better -- in some cases, make life possible -- for people with disabilities.

The process has been slow. It has taken years to create the programs and put the funding in place to allow people with disabilities to live a meaningful life in their communities, in their homes, with the healthcare support they need. Bit by bit, but with much further to go, the argument has moved forward: if you don't want to go back to the bad old days of warehousing people in very expensive institutions where lives were unbelievably difficult and generally much shorter, the public needs to step up and provide support.

This successful argument has won us the MA waiver that provides intensive therapy for children with autism.
We've won funding for health care.
For respite care.
For the home modifications that keep people safe and mobile.
For the supports that allow adults with disabilities to live in the community.

On Friday February 11, Governor Scott Walker proposed a so-called "budget repair" bill that will allow him and his appointees to restructure and slash Medical Assistance programs in Wisconsin. If this bill passes, the future slashing will take place...

Without public notice. Without public input.

The budget bill was released on Friday. A public hearing was announced Monday noon to take place on Tuesday at 10am, less than 24 hours notice.

They want the legislature to rubber-stamp this bill with a vote THIS WEEK. (And they claim they have the votes to do it.)

Very few people even know about the provisions of the bill impacting Medical Assistance.

Just so you can see I'm not making this up, here are some links to news articles...
Walker budget proposal would impact how health care works in state
Budget repair bill gives Walker free hand to revamp, cut Medicaid programs
State attorney said Walker's Medicaid plan raised "potential constitutional issues"

The bill also eliminates outright the agency that coordinates Joy's respite care services, the Wisconsin Quality Home Care Commission. (The cuts in the respite funding itself will surely come later. Without public input or notice.)

Why don't people know about this?

Two major reasons:
1) The bill is loaded with outrages. The one that has been in the headlines, that people know most about, is the proposal to strip most collective-bargaining power from public employees, so that (for starters) the governor can implement a massive cut in take-home pay via drastically-increased employee benefit contributions. [For JoyDad and myself, the loss of income amounts to half our mortgage payment every month, the equivalent of a 150% income-tax hike.] The union-busting, an outrage in and of itself, also sets the stage for immense cuts in public education...

2) The timeline is appallingly, undemocratically short. The advocacy groups have not had time even to properly analyze the Medical Assistance provisions in the bill, let alone inform the public to get to the hearing and tell their stories. The hearing, by the way, is technically still underway as I write, though they adjourned temporarily at 3am and cut off the ability for further people to sign up to speak. People are sleeping-over in the Capitol rotunda in Madison tonight. I submitted my written testimony yesterday morning, but could not stay the whole day awaiting my turn to speak.

As I said in a letter to the editor that was published yesterday, nobody is arguing that there's not a serious budget issue in our state. Some pain will have to be shared. Tax increases will have to be a part of this puzzle.

Governor Walker's approach so far, however, has been to hand over millions of dollars in corporate tax giveaways during a special-session in January this year. In other words, making the hole bigger, so that the coming cuts will be even greater.

And the mechanism that allows unfettered cuts to Medical Assistance, without so much as public notice let alone public input, is moving through practically un-noticed.

Spread the word. Call the state legislators, or e-mail them if their phone mailboxes are still jammed full like they were yesterday! Write to your local paper. Hit the streets if you're anywhere near a rally. The Capitol will be alive with protest today, what with the Madison schools closed as the teachers go out to advocate for Wisconsin public education -- JoyDad and I support them wholeheartedly.

But if the MA issue continues to fly under the radar, the protests won't get that part of the bill so much as tweaked.

Please help!

==========
P.S. A little bit of wonky sausage-making detail for those who are interested in such things! According to the balance of powers in the State of Wisconsin, MA changes have had to go through a legislative process, either through direct legislation or through administrative rule-making. Both approaches require public hearings.

The budget proposal changes the requirements for the process. Changes would be able to be made via "emergency rule," regulations which could be created by the Walker-appointees in the Department of Health Services. Ordinarily, hearings must be held on emergency rules, and then after a specified period of time, the emergency rules must be converted into final rules, with another round of public hearing. However, according to the budget proposal, the new "emergency rules" slashing MA could be passed without hearing by the Joint Finance Committee, simply by the committee declining to take them up. The JFC is currently 8 Republicans, 4 Democrats. The committee WILL DECLINE to take up any proposed emergency rules that result in MA cuts. So the emergency rules will simply pass into effect in 14 days. No public notice, no public input. The bill also waives the requirement for the emergency rules to be revisited and converted into final rules. No chance for public input and changes there either.

P.P.S. As with any post here on Elvis Sightings, I am expressing my own personal opinions, which are not to be construed as representative of any organizations or associations to which I may belong.

P.P.P.S. TinyURL for this post is http://tinyurl.com/67awwje -- please tweet widely.

It Has Gotten Better

2011-02-12T06:34:00.000-06:00

Back in September when I wrote about my terrible, horrible, no-good, very bad experience with Joy's first day of kindergarten, I mentioned another even-worse breakdown that I'd have to write about someday. That experience came back to me this week at swim lessons, so I think it's time to tell the story.

During Tuesday's lesson, I was avidly peering through the glass at the pool waiting-room, watching Joy interact with a new swim teacher. (The wonderful one she started with has left the school, gah! but Joy loves the water so much that she smiled for the new gal anyway.) All of a sudden, a daddy behind me started telling me and another mom how he was a victim in a bizarre robbery incident that got written up in the newspaper. I'm thinking, gosh this guy looks familiar. As he proudly told us how he hassled the cops because he didn't want to tell them his name, and resented that they hassled him back, the feeling of familiarity grew. And suddenly, it clicked. I'd met this guy four years ago at the Children's Museum.

It was about this time of the season in 2007, and I'd been taking Joy to a weekly toddler-music program at the museum. It wasn't an easy thing to do. Joy likes music, but she didn't participate the way the other kids did, and I had to hover carefully to make sure she didn't grab for the other kids' tambourines or whatever. It had only been a few short months since the diagnoses that put the autism and LNSS labels to Joy's situation, labels that still sat like a massive weight on my shoulders.

Suddenly Joy decided she was all-done, and headed for the door. There were two little girls in her way, and instead of going around them like I expected, she gave the first one a shove. The two went down like dominoes, with the second domina grazing her head on a table on the way to the floor. A little blood, a lot of wailing -- and as I started to apologize to the girls' father -- THIS GUY -- his face twisted with anger and he snarled/spat "Thanks a LOT!" He hustled his daughters furiously out of the room before I could say another word.

And I started to bawl. The ugly-cry. Hot, awful tears that would not stop. The sobs just got worse when people started being kind to me... an acquaintance who worked another children's museum program and told me that "this guy" had a museum-wide reputation for unpleasant interactions... another mom with a kiddo on the spectrum who had made great progress... yet another mom who pointed out that any kid might have dealt that shove. It was all so supportive, and yet I couldn't pull it together. Someone even went and tipped off "this guy," who tried to apologize to me on the way out. I was over-reacting so hard to his initial over-reaction, I could hardly acknowledge him. It's a wonder I didn't crash the car on the way home.

Four years later. Once again "this guy" and I have our kids in the same program -- but this time my girl has the support she needs and is having a ball, and I'm in a much better place too, the start of kindergarten notwithstanding. It's kind of amazing to look back over those years and see how far we've come, how much we've learned, how much we've done, how much Joy has grown and matured and progressed.

It has gotten better.

And, we may even be switching our swim lessons to another day so we can have yet a third teacher this term, who happens to be the same wonderful teacher who taught Joy's very first swim lessons in the summer of 2008. Which would have the nice little bonus that I wouldn't even have to hang out poolside with "this guy"!

Farewell Gifts

2011-02-07T11:00:00.004-06:00

Joy's GoTalk communication device had a once-in-a-lifetime message on it for sharing time with her kindergarten class a week ago Thursday.

I said goodbye to my (GrammaJ) last night. We laughed together.

GrammaJ has survived so very much. She lost half a lung to lung cancer years ago, I think it was before Joy was even born. She battled back from a temporarily paralyzing stroke and walked again. She triumphed in a round with breast cancer. She adapted her lifestyle to diabetes and shed a lot of pesky pounds, learned to speak in a whisper after her vocal cords were damaged in surgery, slowed her pace to accommodate heart issues.

But this time is different. GrammaJ is in a hospice facility, and her remaining time with us is likely very short now. It happened suddenly. On January 2, she and GrampaK hosted the family at their home for our fourth Christmas of the season. A week later, she went into the hospital for some tests. A week and a half after that, she was on her way to hospice, with the news that the lung cancer had roared back overwhelmingly, untreatably.

GrammaJ is GrampaK's second wife, with the longer of the two marriages: they just celebrated their 20th anniversary this past year. They married just a couple of years before JoyDad and I started dating. They were in Wisconsin, we weren't -- so I didn't get to know either of them very well until we too moved to Wisconsin in 1998. Then we discovered her warm hospitality and sweet personality and fun-and-feisty sense of humor, and we grew to appreciate how well she and GrampaK were matched!

When we had kids, there was no question that she would be "Grandma" -- not step-grandma or some other nickname, but really-truly grandma. JoyDad's mother passed away before the girls came along; Joy had just turned one when we had to say goodbye to my mother. The girls' step-grandmas ARE their grandmas.

GrammaJ has been so flexible and loving with Joy's needs. She carefully Joy-proofed their home when we'd visit (an extensive task due to many knick-knacks and collectibles!), made sure to serve food the girls would eat, and brought the most delicious cakes for their birthdays. In fact, Rose had me make lemon cake for her birthday party this weekend, with GrammaJ's special super-lemony recipe.

GrammaJ's Elvis Collectibles

The chance to say a final goodbye is a difficult gift. Rose remembers the goodbye trip to Kansas when my mother was in her final hospice-weeks, so for her there's a familiarity to this. She has been processing this farewell quietly and somberly so far.

With Joy, I've had bouts of angst in the past about not being able to properly explain deep and momentous things, from the death of our bunny Phoebert to the birth of the Christ child. Somehow in this farewell, I'm not feeling that way. Not that I have a much better sense of what she does and doesn't understand. I don't. But somehow a few simple, straightforward sentences are enough this time. Maybe, put together with whatever she heard when her classmate's father died of cancer last fall, she is processing this on some deep level. Or maybe not, and these connections will come together another time. Either way, she is who she is, and it's going to be OK.

It was very important that our whole family get to be in on the visit to GrammaJ. We went mid-week, heading out directly after school. Rose had drawn a picture for GrammaJ, an early Valentine to hang on her wall. Joy had brought -- herself. And her giggles! GrammaJ was sitting up in bed, awake and happy to talk with us and exchange hugs. Joy entertained GrammaJ with a giggly sneezing-game, where Joy & partner exchange utterances of "ah... ahhh... ahhhh..." and then comes a joyful "CHOOOO!" GrammaJ shared her apple juice from dinner; we weren't sure what Joy would do, since she's been refusing apple & most other juices since last April. But Joy accepted the gift of apple juice with a smile, and drank almost the whole thing.

I so appreciated the chance to see GrammaJ, and give her a hug, and tell her what a magnificent grandma she is. And that I love her, and to share the message that I first told Rose during our last visit to my mother -- that a loving God is taking care of all of us, and will still be taking care of grandma, even when she's not with us any more.

We love you, GrammaJ.

Elvis - Can't Help Falling in Love

Snow Sculpture

2011-02-02T15:59:00.000-06:00

Two photos.

Before (as last night's blizzard was just starting to gain steam):

After (the blizzard had blown and snowed and sculpted all night):

The Almighty has a pretty impressive touch with this snow-scuplture stuff.

Twice as Old

2011-01-31T12:23:00.003-06:00

Happy birthday to me!

It occurs to me that I'm more than twice as old as I was when my classmate and I made these signs:

and hitch-hiked from Freiburg, Germany over to the gorgeous town of Strasbourg, France:

and then re-crossed the French/German border in the company of a car-load of Algerians. Who ditched us right after we got across the border (I think we were more trouble than we were worth), so then we caught a ride on a big rig with a long-distance trucker, who didn't want to go into town when we neared Freiburg so he dropped us at a rest stop and we had to find someone who would take us into town from there.

Good times! And, good guess, Lynn. I'll grant you that much, seeing as how you made the whole pack-o-memetastic-lies happen in the first place....

Back to the present day, we had a low-key celebration. JoyDad took us all out to eat, and did all the Joy-packing and Joy-wrangling to make it possible (she really did very well, as restaurants go.) Rose made me a birthday card, and they gave me a book edited by a college classmate of mine, and this evening we're going to eat my traditional favorite -- as baked by JoyDad -- spice cake with penuche frosting.

Joy is a Guppy

2011-01-28T06:29:00.001-06:00

How often is it that you get to do something that you absolutely need, that is the healthiest thing for you, and is also the most fun you've had all day?

Joy had that experience on Tuesday after school, starting a 10-week session of swimming lessons.

I figured she'd enjoy it, but was a little bit wary. We'd last done swimming lessons at this facility back when I was just getting this blog going, the second half of 2008. Joy had a great one-on-one teacher for the summer session, and I posted triumphantly to Elvis Sightings to show off a perfect report card for the beginner Crab-level skills. Graduated after one session, just like any other kid, woohoo! (That post, by the way, is among my all-time most popular in terms of hits, as people go Googling for images of swimming report cards. Go figure.)

Alas, the second session of lessons did not go so well. Joy's fall-session teacher didn't "get" her and Joy responded accordingly. The second report card was so disheartening I didn't blog about it for months -- not only did Joy not get a Guppy (level 2) report card, her Crab report card suddenly had her going backwards, losing mastery of skills marked "M" the first round, even though I'd witnessed them working on new skills. (The staff fumblingly made it worse by explaining they'd been more honest the second round. Ugh.)

And then we got fully-underway with intensive autism therapy, and stopped the swim lessons altogether.

Lots has changed since then. Our schedule is more open now that school is underway. Joy is longer, taller, stronger. We've seen some glorious gains over those several years in communication and interaction. (Hurrah for Agency 2 and relationship-emphasizing House Blend therapy!) We've also seen Joy get braver at the public pool with jump-ins and dunking under on her own.

Tuesday with a new one-on-one teacher, I saw it all come together.

Joy had grown into Rose's old swimsuit that matched the one Joy was wearing last time we had lessons! She and her new teacher hit the same wavelength immediately, as the teacher led off right away with big smiles and animated praise -- a lovely repertoire of enthusiastic affirmations. Joy not only responded but started initiating little giggly face-making games! They were having more fun together than anyone else in the whole pool. And the kicking around against the resistance of the water was just the kind of sensory input that Joy needed.

She kept up with every one of the Crab skills her teacher put her through:
-- Submersions with Instructor
-- Backfloats with Assistance
-- Comfortable on Platform
-- No Tears

And, she's already got one of the Guppy skills nailed: unassisted jump-ins.

I have yet to confirm it with the new teacher. But if Joy doesn't get a Guppy report card this session, I'll eat my swim goggles.

Truth, Lies, and Memetasticity

2011-01-25T05:30:00.005-06:00

Oh, I shouldn't-ta done that.

My latest Facebook status-update is a re-post of a status-update making fun of awareness-raising status-updates.

As karmic revenge, I've just been tagged for an award that makes fun of award-tagging! Unlike most awards, which by the time you get them you have no idea where they originated, this one was invented by Jillsmo from Yeah. Good Times. (And she, like, even admits it!)

The award was ~~inflicted~~ bestowed upon me by Lynn of My Life as an Ungraceful, Unhinged, and Unwilling Draftee into the Autism Army. The instructions are ~~mighty foul-mouthed~~ not entirely suitable for family blogging. So I'm going to abbreviate. Click on Lynn's link above to see what I've left out.

You must proudly display the absolutely disgusting graphic that I have created for these purposes...
You must list 5 things about yourself, and 4 of them must be bold-faced lies...
You must pass this award on to 5 bloggers that you either like or don't like or don't really have much of an opinion about...
If you fail to follow any of the above rules, I will... (yadda, yadda, yadda, see how scared I am!)
This one isn't actually a rule, but once you do the above, please link up to the Memetastic Hop so that I can keep track of where this thing goes.

OK, with all those bleepedy-bleep rules out of the way, here are my 5 statements, four of which are lies.

This is the last blog-award I am EVAH going to allow to waste my precious time (and yours). For reals.
I turned down two offers of marriage before JoyDad came along.
I am so allergic to make-up, I almost break out in hives just thinking about it.
I once hitch-hiked across the French/German border, in the company of another American, picked up by a carload of Algerians. The border guards had no idea what to make of us.
I took a stilt-walking gym class in college one semester, in which I learned to walk on clown stilts three feet high. Never looked so slender in my life, before or since!

There you go. Guess away if you must. And I'm not going to pass this on, nor even ask you to post your own truth-or-lies. 'Cause Jillsmo doesn't know me from a hole in the ground anyway. (Oh wait... is that Lynn who's going to carry out the dire threats?)

Every Child Will Participate

2011-01-23T11:30:00.002-06:00

We're all swatting at the same mosquitoes
Eating burned-up burgers
At the picnic of the world.
-- Tom Chapin, "Picnic of the World," to the tune of the CanCan

It was an ambitious project. I first heard about it at a PTO meeting last November -- Joy & Rose's school had won a grant to host a dance residency in January. For three intense weeks, a university dance professor and one of her doctoral students would swoop into the physical education classes, teaching grade-appropriate dance curriculum while choreographing (with major student input) an hour-long all-school performance.

"Every child will participate," said the principal.

I raised my eyebrows. Even the non-verbal second-grader with CP who relies on staff to wheel her chair around? Even Joy, who follows very few directives and has trouble with noises and large groups of people?

Come January, though, Joy's staff was ready and willing. PhyEd is one of Joy's best bets as far as being in class with her peers, and her gym teacher and special educator collaborated with me on how best to make the experience successful for Joy, and the initial dance-class sessions went reasonably well. We hammered out a plan whereby Joy would participate in only the first of two evening performances, with her trusty special educator at her side the whole time. We cancelled Joy's therapy for the evening of the performance, re-scheduled Rose's piano lesson, and went second-hand-store scrounging for the right color of shirt for each of them to wear. Brown for Joy, yellow for Rose.

The first hint of trouble came from Rose. She wasn't enthusiastic about the dance residency from the beginning, and ramped up the complaints as the performance neared. It's too chaotic -- this isn't coming together -- we don't know what we're doing -- everyone is SCREAMING in the gym, it gives me a headache!

Uh-oh.

Then on the day of the performance, the whole school had dress-rehearsal all afternoon, first class-by-class, then as an all-school group. When I came to pick up the girls at the end fo the day, one mama (who had come to see the rehearsal) told me that Joy had danced and done just fine. But then out came the special educator with a teary-eyed Joy, and gently told me -- the performance might not be such a good idea. As long as Joy was sitting on her lap in the noisy chaotic rehearsal, it was at least manageable. But when she and her group were "on," Joy had been frustrated, tearful, lashing out. Her special educator had had quite a dance herself, trying to guide Joy through the motions while anticipating and blocking all the other-directed acts-of-ow. It wasn't fun for anyone, just an unfortunate spectacle. (That last was my summing of the situation, not her words!)

One on level it felt like the first days of kindergarten all over again. All that prepping, all those plans, lost in a whirl of tears and frustrated injurious outburst.

On the other hand, I've had some practice now in adjusting expectations on the fly. Plus Joy's special educator was great. She was willing to hold and sing to Joy through the whole performance if we wanted, or to care for her in another room while we watched Rose perform. We decided, though, that Joy would be happier at home, and did a parental tag-team instead: JoyDad went to the first iteration of the show that evening, I went to the second.

It was entirely the right decision.

The gym was way overcrowded, and noisy, and hot. This stood in contrast to the outdoor temperatures which were plunging toward zero and beyond! By the second performance, the one I saw, even some of the NT kids were tired and teary. SO not Joy's scene.

The show came together really well, though! They were working on the school's motto, the theme of "Growing Strong." Then they divided it into four things you need to grow strong: sleep (kindergarten), shelter (first-graders), food (2nd/3rd graders), and clean air (4th/5th graders). Then each division had a wide latitude for interpretation. Joy's class, for example, had learned about Great Horned Owls -- sleep, night, owls... toldja it was widely interpretive! -- and moving with bodies held tightly and loosely. Best moment: watching the kindergarteners pounce and consume their prey, and then mimic regurgitation!

Rose's class, on the theme of food, went with a Picnic of the World dance. Their movement goals included African dance forms and cross-rhythms, which brought in the international component. Then for the picnic/food component, they split into small groups, each of which designed its own dance moves incorporating a picnic blanket.

Rose's complaints about the dance residency vanished for the performance. And I realized I didn't have much to complain about either. Joy had gotten the benefit of the instructional part of the residency, really quite a neat experience in itself, and Rose got to perform (which she loves to do, even if she couldn't articulate one single thing she'd learned from the dance residency.) Each child participated on her own terms, and at the end of the day, I guess that's really what it's all about.

We're all knowing at the deep-down heart of it,
We're all a part of it,
The picnic of the, picnic of the, picnic of the world!

One Last Bit of Administrivia

2011-01-23T07:11:00.000-06:00

Hmmf. My efforts at updating Elvis Sightings to use third-party comment-threading software have not gone as I hoped. (You may have seen the two test-run posts that I've since deleted!) It took trying out both Disqus and IntenseDebate to realize that any comments using either software would be stored separately from the actual blog -- and there were some other technical issues too. If I were starting a new blog, I'd probably use IntenseDebate. But I'm not starting a new blog.

So, back to our regularly scheduled programming. Maybe one day Blogger will get with the program and integrate comment-threading within their own software!

Squeezing the Balloon

2011-01-21T06:02:00.006-06:00

Some aspects of life with Joy lately have felt rather like what happens when you squeeze a balloon. If you put your hands around the most bulging part of the balloon and squeeze, the air will move over and make another part of the balloon bulge instead...

Or that classic bedbug baby-toy, where there are four bedbugs and two are always "up." Hit one with the little plastic hammer, and it pops down but another pops up.

Take, for example, Joy's stims. She's not pulling down Christmas cards or plants (yay!) But she is getting so insistent on snow-stimming that it's harder and harder to make even a short walk between car and school, even if the sidewalks are clear -- she dives and kicks into the snowbanks on either side, and then goes limp when you try to get her to stand and walk. And she's getting terribly insistent on "making friends with the pillow" if left to her own devices for any length of time at all. That lovely fleece boa I made her for Christmas, that I was hoping would be a socially-acceptable twiddle-stim? She lo-o-o-o-o-oves that boa, and not in a way we can take out in public. And if we take the boa away, the house is full of usable substitutes.

Then there's the "acts of ow." She's hardly pulling out her own hair any more, and the self-injurious stuff has dropped to near zero (yay!) But guess what has gone way up instead? Outbursts directed at other people. Hitting, kicking, hair-pulling, as a very touchy and very immediate frustration response.

I don't like the balloon/bedbug-toy analogy nearly as well as I like comparing Joy's development and behavior to a mixer board (with sliders that go both up and down but don't necessarily have to be zero-sum.)

I'm pretty sure that the stimming does have to happen in one form or another, though I wish we would be able to have more influence as far as what the range of preferred stim would be. [Update: TherExtras reminds me to link to our joint-post from a year ago, Stim-Sense, that explored stimming issues.] Even more so, I wish the acts-of-ow weren't acting like a squeezed balloon. Because as far as I'm concerned, I'd rather have that acts-of-ow-balloon just pop and disappear altogether.

Tagged, Redux

2011-01-17T20:00:00.001-06:00

I've circled back to blogging about tagging several times now. My first Tagged post was about Joy's Project Lifesaver radio tag, for tracking purposes in case she wanders. (Now that she's in kindergarten, we're extra-glad to have that safeguard.) Just lately, I succumbed to the lure of tagging via blog-meme.

Our latest new form of tag in the JoyFamily is a disability hang-tag for access to priority parking spaces.

Parking lot safety for Joy has long been a concern of ours, but the possibility of a hang-tag didn't really click for me until I had a conversation with Joy's special educator about dropping Joy off at the start of the school day. I've got my work-schedule arranged so as to be able to do both drop-off and pickup for the girls at school, so we aren't taking advantage of the "short bus" that drops kids right by the back door. If you don't bus, parental drop-off is on the far side of a busy street, with a walk either up or down-hill to the crossing guard. As an alternative, Joy's special educator mentioned that some parents do a quick drop-off in the handicap spots. Of course, for that you need official dispensation.

Earlier in our journey I'd have had more of an internal debate. ("But she's not handicapped -- she's just delayed a little -- we don't really need this -- why mark her as more different than she already is" -- etc.) At this point, though, I've learned to agonize less over taking advantage of available resources and designations that can make our lives easier. The application for the tags was a simple form, just a download away. It needed a physician's approval, which Joy's doctor gave easily on request. Two hang tags soon arrived in the mail, one for each car's glove compartment.

So far, I have used them sparingly: only at school, and only at drop-off. In general I'd prefer to have Joy learn to walk with me and her sister and the other kids. Sometimes we make it the whole 15-minute walk home! However, if there's rain and puddles, or new snow, the walk becomes too much of a stimmy distracted battle. It's exhausting, not entirely safe, and sets up a miserable mood for turning Joy over to school staff. So on those days, out comes the tag and we drive practically up to the door.

I haven't yet used the tag in a public parking lot yet, but I sure feel better knowing we have the option. Parking lots can be scary-rough -- there was a set of helpful parking-lot tips the other day at Stuart Duncan's blog with suggestions for the situation. (I added the hang-tag suggestion in the comments!)

It has crossed my mind that, with Joy's invisible disability, we might come in for some pushback from the self-appointed parking lot police -- the folks who see fit to call challenge if they see someone they don't think looks disabled get out of a car in a handicap-accessible spot. I was reminded of this yesterday when Rachel posted at Journeys with Autism about the barrage of doubt and disbelief that people with invisible disabilities often face. She mentioned one woman who developed a snappy comeback for the doubters: when someone issued a "you don't look disabled" parking lot challenge, she'd fire back, "And you don't look like a doctor!" (Rachel's post and the comments were much more detailed and nuanced than this little example; well worth the read.)

I gave a quick delighted high-five in the comments about that comeback -- it's so the perfect response that you wish you'd thought of at the time! I've been re-thinking my enthusiasm somewhat, though. It strikes me that if any parking lot pushback were to come our way, I'd rather be prepared with a gentle, educational answer than a snappy zinger. That way if the challenger turns out to be a well-meaning soul and open to new ideas, I might be able to send them away thoughtful rather than cranky/defensive. And if they really deserved the edgy comeback after all -- well, then I'll have been nicer to them than they deserved. Which wouldn't be so bad.

I should make clear that my re-thinking is in no way meant as a prescription for how I think everyone ought to react to a parking lot challenge. Just my own thoughts and planned approach. A person with an invisible disability who has had it up to HERE with spending precious energy trying to educate people who won't listen anyway -- may well choose a different approach entirely.

The snow has been falling all day today. Glad we've got that hang-tag for tomorrow.

Inchstones

2011-01-13T06:08:00.009-06:00

I got introduced to a new word the other day over at Special Needs Disability Parenting: BLOOM. The author was reflecting on how daunting the typical "milestones" can seem, when they feel so few and far between for our kiddos (and typically-developing kids are just galloping along.) She spoke of giving due celebration instead to the advances that would to others seem small. The baby-steps, the inchstones.

We've had some very nice inchstones with Joy lately.

Schoolwork is paying off! It's rather a new phenomenon for Joy to suddenly show us something that we haven't been working on at home and weren't particularly tracking with from school. Recent example: Joy has been excited to play catch at home lately, with a soft inflated kick-ball-size ball. All of a sudden, we started seeing her do occasional two-handed throws over her head, something we'd not taught her. "Oh, we learn that in gym!" cried Rose. And sure enough, Joy had been working on it both in gym and with her one-on-one staffers.

Another was when we went to the library earlier this week and encountered a chunky wooden bead-stringing set that went with Eric Carle's classic book The Very Hungry Caterpillar. There was a wooden butterfly attached to the far end of the string, and the "needle" was the caterpillar, and all the foods that the caterpillar ate were the beads to string. Joy knew exactly what to do, even though the "needle" was a long rectangle and had to be inserted just-so, and we hadn't done beads at home for a quite a while. But she's got a bead-stringing task-box at school!

Another delightful set of inchstones stareted with the Christmas tree and stockings and cards that she left unmolested this year. Right behind her dining chair, those cards are. Easy reach, and stimmy-favorite material. And yet she hasn't pulled down a single one.

The tree as well, she only made a very few grabs for it this year, even though she was easily tall enough to take it down with one good pull had she chosen to do so.

Emboldened by our success with the tree, I tried something new when we took the tree down. I replaced it with a plant that's been exiled to the back bedroom (now Rose's room) for years. I can't even remember when we pulled the last plant out of our common living area for Joy-proofing purposes. Long, long since.

The plant has now stood in place of the tree for a week and a half. We had to warn Joy away a couple of times, but she has mostly let it be.

This plant is a survivor, and not just of Joy-depredations. We rescued it from JoyDad's mother's condo after her passing in 1998. A number of weeks had gone by between the funeral and the final housecleaning, and the soil in the plant's little six-inch pot was bone-dry. We didn't really expect the plant to survive even the trip home from Chicago, let alone the long run.

Not only is it still going strong, it's some inches taller than Joy now.

We reckon that Grandma P would approve, and is somehow celebrating the inchstones right along with us.

Stylishly Yours (More About JoyMama)

2011-01-07T06:01:00.003-06:00

Well, the joke's on me. Just when I say I've never done one of these seven-things-about-yourself memes, I get ~~tagged~~ honored with the Stylish Blogger award, courtesy of my splendid recently-acquainted bloggy friend Professor Mother.

The rules of this award-game are that the recipient post seven things about herself and then pass the award on to three other stylish bloggers. I've been ridiculously non-compliant with meme-awards in the past, but I actually feel like doing the seven-things part this time, so here goes:

1) My three words for 2011 are: active, tidy, relax. (See Both Hands and a Flashlight for more about the three-words thing.)

2) On the "active" front, I've actually biked to work a couple of times this week, courtesy of a major snow-melt between Christmas and New Years that left the paths clean. Nine degrees Fahrenheit on the way there Wednesday morning, snowing on the way back. Woohoo!

3) "Tidy" applies to things like the filing of papers and the more deliberate tracking and attending to loose ends in various aspects of my life. It does not, however, mean that I'm going to buy back into the societal fetish that says grown women's legs need to be baby-smooth-depilated, either by razor or other means. Because I gave that up in 1987. (Got me a career and a JoyDad anyway. Heh.)

4) In 1987 I was studying in Germany for a semester. The other additional country I've lived in, besides the US, was Botswana, when I was a pre-schooler and my parents were on a two-year assignment with Mennonite Central Committee.

5) JoyDad and I went non-traditional when it came to engagement rings. Instead of spending money we didn't have for sparkly rocks from the mines of southern Africa, we bought each other ten-dollar sterling silver pinky-rings. They seemed to work! (Our wedding bands are gold and plain.)

6) I read around 30 new books a year, not counting re-reads. Some of my favorites from 2010 were The Guernsey Literary and Potato Peel Pie Society, and Playing the Enemy.

7) I re-read The Lord of the Rings about once every two years. My first time through was in 8th grade.

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OK, there's my meme-fulfillment. Here's where I break the rules -- like Jess (another of Professor Mother's awardees), I don't feel like figuring out whom to pass the award to. So I'm not going to do that part. How about you all take care of it for me, by posting something fun about yourself in the comments!