Vote Barrett for Wisconsin Governor, June 5

I haven't written much about Wisconsin politics here lately.  For one thing, the legislative session is over for the year, so there haven't been any new laws in the pipeline to promote or resist.

But next week is a big one here in Wisconsin.  On Tuesday June 5, voters will head to the polling places to determine whether Scott Walker gets to finish his term as governor, or whether Tom Barrett will step in to finish the term and try to begin to repair some of the damage that the Walker administration has wreaked on this state since January 2011.

Faithful readers may remember my spree of outraged, astonished posts in February 2011, as Governor Walker "dropped the bomb" (his own words) on Wisconsin -- blindsiding the state with an unnecessary "budget repair bill" carrying immense, devastating policy consequences for Wisconsin Medicaid, collective bargaining, and more.  If the protests hadn't happened, and 14 state senators hadn't chosen to work from Illinois for a couple of weeks, that bill would have become law within a single week's time, with most of the public not even knowing what was in it, let alone having the chance to weigh in.  Inaccessibility, autocracy, secrecy and flat-out lies have continued to be hallmarks of the Walker administration.

Here, by contrast, is Milwaukee mayor Tom Barrett as he started his campaign a month ago -- reaching out to the "Stand With Walker" counter-protesters who showed up at one of his events:

Communication and listening and reaching out to ALL the people is so basic, and it's been so badly missing this past year and a half in Wisconsin.  But what's at stake goes well beyond that.

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

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

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

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

That's why money has been defined as free-speech -- for the purposes of buying electoral majorities in both the courts and the legislatures, so that the plutocratic policies can pass with unstoppable margins.  (Witness the astonishing flow of big-donor dollars, 70% from out of state, to the Walker coffers.)

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

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

We need to push back whenever and wherever we can.

And in Wisconsin, on Tuesday, we can speak via the ballot box against Wisconsin's Walker big-money juggernaut by voting Tom Barrett for governor on June 5.

Eight Years Old

Happy birthday, dear Joy!

We just got back yesterday afternoon from our annual Memorial Day trip "up north" to the family cabins, a trip that regularly coincides with Joy's birthday.  I've just changed the "Introducing Joy" sidebar to reflect her new age.  Eight.  Hardly seems possible -- eight years old!

We celebrated with balloons and bubbles and little cupcakes in the cabin.  We'll have further celebrations at home, and shopping for a big-girl birthday bike as soon as we get our post-holiday act together to do so.

As Memorial Day trips go, this one was relatively uneventful, especially considering our track record of muddy departures and explosive avian visitations.  (Well, JoyDad did have to do some work on breaking out a beaver dam that was flooding the road.  But we'd had warning so that was expected.)

Our party was smaller than usual, just the four of us and GrampaK.  The weather was pleasant for the end of May, mostly cool with a couple of rainy bits but at least one warm-enough-to-swim afternoon.  We did our traditional walks in the woods:

and spent a lot of time on the screen porch watching the hummingbirds come to the feeder:

(When I posted this one on Facebook, I captioned it: "Secret for a long-lived relationship -- always respect your partner's side of the hummingbird feeder.")

You can tell that your daughter is growing up when she wants to drive the boat!

Not to worry, folks, it's safely docked.

One of the basic experiences of life up at the lake is the lack of running water.  We bring drinking water along, but wash water for the dishes and floor and ourselves comes from an old-fashioned pump just a little ways away from the cabin.  This weekend I had a startling realization -- though we'd been bringing Joy up to the cabin at least once a summer for her whole life, and sometimes more often than that... we'd never taken her down that short path to "help" pump water.  It's been part of Rose's experience since not long after she could walk.  But with Joy, early on I suppose it felt like too much of a hassle, and then later we just sort of had our fixed routines and always expected to come back from the pump with a full bucket in each hand, and no hand left to hang on to Joy lest she make a dash for the lake.

This vacation I finally realized what had been happening.  And Joy and I went to have fun with the pump.

So easy, to get into these ruts and hold our kiddos back.  We've got to do better than that.

We will not have another trip to the lake without a trip to the pump for Joy -- which she enjoyed to the hilt, my sweet water-loving child.  We've got to keep examining, and listening, and doing better.

Happy birthday, my sweet eight-year-old!

Joy's iPad, iPad's Joys

When I first heard what Apple had named their new tablet-technology, back when it came out a couple of years ago, I chortled along with the wags who made Kotex jokes.  What company in their right mind would give their product a name that sounded as if it belonged in the "that-time-of-the-month" aisle?

OK, fine, nobody's laughing anymore, and that includes me (except at myself for my skepticism).  Two years later I'm happy to admit: the iPad is an amazing piece of technology, and Joy is reaping the benefits in a big way.

As long-time readers of this blog know, we've been making fits-and-starts at picture-communication with Joy for quite a while.  We have lots of little laminated photos and icons that we velcro-ed on to various pages or sequences for Joy to grab and hand to us to indicate choice-making or to tell us something.  We used the same velcroed items or laminted sheets of icons in a GoTalk4 where we could record a message or word and Joy could push the right picture to make the device "say" that thing.  We even spent a couple of months of regular appointments at the Communication Aids and Systems Clinic (CASC) at the Waisman Center in Madison to see if Joy would take to a more sophisticated programmable talk-by-icon-choice computer device with a touch-screen from the Prentke Romich Company (PRC) -- I believe it was a SpringBoard Lite.  Every one of the approaches showed some promise, but had drawbacks.  The laminated photos and icons, for example, were highly desirable in and of themselves as "stimmy" objects, which interfered with what their communication-meaning was supposed to be.  The GoTalk wasn't particularly flexible compared to computer-based products, and also became an object of desire in and of itself -- she wanted to use it as a noisy-toy.  The PRC device, she wasn't showing nearly enough interest and progress to be able to justify Medicaid card-service funding (two-and-a-half thou'worth).  So we sort of went into a holding pattern for a while with the GoTalk and velcro-icons, at least at home, and things stayed that way for a while.

Fast-forward two years, and much has changed.  We've had some developmental surging, along with a new funding stream via the Children's Long-Term Support MA waiver that allowed us to purchase an iPad and apps for Joy with a significantly less stringent burden-of-proof and paperwork (and at lower cost than the SpringBoard Lite as well).

And oh, how she has taken to it!  The iPad touch-screen is somehow just the right thing at just the right time.

Our basic setup is an iPad2 (16GB with WiFi), with an AMDI iAdapter2 protective speaker box (which I'll have to review in a separate post).  The most important app is ProLoQuo2Go ($189.99), a communication program in which the user taps labelled icons to get a synthesized voice to "say" the word or phrase.  You can set the icons/words up in the categories you want, and control how many appear on the screen (hence their size as well), and take or import your own photos or select from a sizeable collection of pre-programmed icons.

What a technological leap forward!  For a brief comparison, in order to put a photo on the GoTalk, I had to:

1. take the photo
2. import the photo from camera to computer
3. re-size the photo
4. print the photo (at some cost in printer supplies)
5. cut the photo to size physically
6. laminate the photo (more supplies)
7. trim again
8. add velcro (still more supplies)
9. record the right word in my voice, or get Rose to do it, on the GoTalk

To make an icon in ProLoQuo on the iPad, the only supplies I need are: the iPad.

1. I tell ProLoQuo to make a new icon (easy tap-and-type process)
2. I type in a label for it to say
3. I indicate whether I want to use an icon from the collection, or use a photo (existing or take a new one)
4. If I choose to take a new one, the iPad camera launches and I can snap the shot, and re-size it right there.

And voila, new photo icon created.

So now when Joy wants to watch a video, she can tell me which one by tapping a photo of the video cover. She is making real choices from a field of 25 icons/images, and has mastered the tiny 1/4-inch "Back" control icon that navigates between levels among the folders.

My beefs with ProLoQuo2Go are minor so far.  I miss the ability to record my own voice, or Rose's, and I don't always like the inflection of the synthesizer, particularly in phrases or sentences.  (At least one can override any given word's pronunciation with a new phonetic concoction of one's own -- I had to do that with the Baby Mozart video icon, for example, for which the default pronunciation sounded like "Baby Moe-ZHAR.")

The biggest challenge for Joy so far in using ProLoQuo has been less about understanding and navigating, and more about us keeping up with her.  At home we only have a few useful categories for making choices (songs, videos, LeapPad cartridges).  There are other categories for school -- occupational thereapy, classroom choices, lunch/sharing-time.  We need to give her more.

Meanwhile, though, there's no doubt that she gets it.  One day not long ago, I was puttering in the kitchen while Joy played in the living room right around snack time.  Suddenly she came running, jumping up and down expectantly.  I led her back to the living room to grab the iPad so she could tell me.  And there lay the iPad on the couch, open to the "snack" category within ProLoQuo.

She had told me.

I just hadn't been close enough to hear.

-----

I'll have a lot more to say about the iPad and the various apps we've been using so far, because I know this is information that's important to share!  For now, I'll link to a couple of useful lists of iPad apps that are excellent starting points:

iPad Apps for Communication, Learning, & Fun (pdf) -- by Amy Nelson, Kristi Otto and Connie Biksacky, presented at an Autism Society of Greater Madison April mini-conference

iPad Apps & Resources for People with Autism: Reviews, Links, Prices (Google spreadsheet) -- by Shannon des Roches Rosa, Corina Becker, and Jordan Sadler -- a parent, an adult with autism, and an SLP -- updated frequently

Global Warming?

May 2, 2004 

Rose, pre-Joy

May 2, 2012 

Rose and Joy

Easter Sunrise

Now the green blade riseth from the buried grain,
Wheat that in the dark earth many days has lain;
Love lives again, that with the dead has been:
Love is come again, like wheat that springeth green.

In the grave they laid him, love whom men had slain,
Thinking that never he would wake again,
Laid in the earth like grain that sleeps unseen:
Love is come again like wheat that springeth green.

Forth he came at Easter, like the risen grain,
He that for three days in the grave had lain,
Quick from the dead my risen Lord is seen:
Love is come again, like wheat that springeth green.

When our hearts are wintry, grieving or in pain,
Thy touch can call us back to life again,
Fields of our hearts that dead and bare have been:
love is come again, like wheat that springeth green!
-- John M.C. Crum, 1928

Christ is risen!
Alleluia!

1 in 88, 1 in 252, 1 in a million

The new autism-prevalence estimate numbers are out from the Centers for Disease Control.

One in 88 is the new number. One in 54 among boys, one in 252 among girls.

For Joy, I'm also always aware that the autism diagnosis is on top of her linear nevus sebaceous syndrome, for which numbers are not collected and estimates are rough and wacky. My guess is that the combination makes her, yes, one in a million. At least.

Nobody really knows what the numbers mean (though opinions abound) -- how much of this increase heralds a new and dramatic change for who we are as human beings collectively, and how much involves increased recognition of who we've always been. And here we sit at the close of Developmental Disability Awareness Month (March) and the opening of Autism Awareness Month (April) and I find myself wondering together with Commissioner Sharon Lewis of the Administration on Developmental Disabilities:

At what point do we move from seeking simple awareness about intellectual and developmental disabilities to expecting meaningful respect for people with ID/DD?

Here is our beautiful one-in-a-million Joy:

The artwork above is courtesy of a drawing program on Joy's new iPad, whereby we can easily take photos and trace them via the touch screen. No, she didn't do this herself! Joy actually doesn't like the drawing program any more than she likes to draw on paper. But I think I'm going to need an entire post or more for the iPad, and this one isn't it. The rest of this one is actually about an outing last weekend to the local arboretum, on a one-in-a-million spring morning that came five or six weeks early for how Wisconsin usually operates. (Does this herald a new and dramatic change?)

The cherry blossoms were out in full magnificence:

Joy got to smell the blossoms with a bit of help from her sister:

You can see that we're going to be sun-screening the scalp again this summer. Yes, I did have to reprise the almost-buzz-cut routine again due to stimmy hair-pulling. On the bright side, now that we're on our third go-around with this, it's gotten a whole lot easier than the first time we experienced this.

But speaking of delightfully-stimmy things -- I think that Joy's favorite part of the trip was a bush whose excellent qualities could be experienced in any season:

I think there will be more arboretum trips in our future this summer. It's good cheap entertainment, seeing as how we weren't winners of $640 million... (Yes, JoyDad did go and drop $5 for the thrill of it all. Rose was fascinated -- she'd never seen a lottery ticket before!)

Keep calm, and carry on...

Mad Props

The top definition in the Urban Dictionary for "mad props" goes like this:

"mad" = extreme; "props" = support (in a congratulatory sense)
Mad props to the creator of this site!

In Wisconsin, mad props are due to a dedicated contingent of disability advocates who've been working on various legislative initiatives that were decided this month in the Capitol. It seems almost strange to have so much to celebrate on the disability-advocacy front in Wisconsin, in a year when so many things have careened in such a miserable direction. But it's true -- and it was bi-partisan, too!

I wrote in greater detail on four big legislative wins in a piece on Daily Kos earlier this week, but here's the short version:

Big Win #1: We managed to halt a cash-grab of a bill, a terribly-flawed school voucher program written by the American Legislative Exchange Council (ALEC) and called the Special Needs Scholarship Program Act. I wrote about it on Elvis Sightings back in May and July last year.

Big Win #2: The legislature lifted the caps on enrollment in Wisconsin's long-term care programs, fixing a serious problem that had been created by Gov. Walker's 2011/2013 budget. I've been active on this one too; wrote a personal take here called Freezing the Future last spring when the caps were imposed.

Big Win #3: The legislature passed a bill limiting and regulating the use of seclusion and restraint in public schools, an issue that falls disproportionately on students with disabilities. The vote was unanimous in both chambers!

Big Win #4: The legislature passed the People First bill, updating terminology in Wisconsin statute such that the outdated & pejorative "mental retardation" will be replaced with "intellectual disability." Another unanimous bipartisan win -- down with the "R-word"!

My Wisconsin Partners in Policymaking class had our fingerprints all over these. Many of us had been involved in one or more of these initiatives for years! Now that we were organized as a class, we went into high gear during the last month of the legislative session: testifying, organizing, and writing and calling and lobbying our legislators in person.

When we met last Friday just after a week of all these wins becoming official, we were ready to celebrate! Mad props to every last person in the group! To our great delight, we received an invitation as a group to attend the bill-signing event in Milwaukee in which Governor Walker was to sign Big Wins #2-4 into law! About half of our class were able to attend. (I didn't make it, but was there in spirit -- while hand-delivering thank-you letters at the Capitol to legislators on both sides of the aisle.)

Our training last weekend focused on the ins and outs of the legislative process that we'd just experienced so powerfully, with lessons and role-plays on communicating with law-makers, and how to craft a winning message on our issues. One dominant theme was the importance of a nonpartisan approach. We heard again and again that our issues transcend party lines; that there are disability champions on the right as well as on the left; that we need both parties on our side no matter who's in power.

That's a challenging lesson to internalize at this point in Wisconsin history. I've proudly staked out a personal partisan stance in full-throated opposition to what's been wreaked on Wisconsin from the right this past year. And yet, my Partners in Policymaking family (it's really starting to feel that way) has a range of partisan leanings. I was one of three Partners who sat for hours waiting to testify against the voucher-bill before the Senate Education Committee, sitting in solidarity on this issue right next to a colleague whose political leanings are quite different than mine.

I was tempted at that hearing to rail against the corporatist, cash-grab ALEC roots of the voucher bill, something that Rep. Mark Pocan (D) did very effectively later in the Assembly when the bill came to the floor. However, I resisted the urge and kept my remarks focused on Joy and on the substance of the legislation. Having done so, I was then able to take a thank-you letter to the office of the Republican chair of the Senate Education Committee, and have a cordial and productive conversation with the clerk who had staffed the hearing for him.

I don't know who in our Partners group has signed the recall petition, but I know that it didn't really matter when it came time for people to decide whether or not to attend the bill-signing ceremony. The importance of the legislative victories FAR outweighed any political point-scoring maneuvers. We were enjoined to keep the date & time of the signing a secret such that political protest would not overshadow the content of our victories, and we all did so. After all, it takes a governor to sign a bill into law, and we've got the governor that we've got, not the governor that some of us might wish to have!

Being present at the signing was a powerful experience for my Partners colleagues, as evidenced in post-signing blogging -- there were a ton of photos and stories on Facebook as well. It was jarring and dis-heartening after the ceremony, then, to learn that a spokesman for the Democratic Party of Wisconsin had made the following statement to a news reporter about Governor Walker and the event:

"It’s pretty shocking that he’s using a community that he’s almost ground underfoot in this budget as props, as he’s seeking recall here."

Props. The spokesman for the Democratic Party of Wisconsin thinks that all those incredibly hard-working, politically-savvy, overwhelmingly-committed disability advocates at the bill-signing were nothing more than mindless props for Governor Walker.

We're not props. And being called props makes us... well, MAD.

Both I and another Partners colleague wrote letters to the Democratic Party of Wisconsin, pointing out the error of the spokesman's ways.

We need to work with both parties, celebrate what both parties do right, and hold them accountable for what they don't.

And with that, I promise that the next post will be much more Joy-centric! Because that's what all this policy stuff is about. It's about people, and making better lives for all of us.