Saturday, December 31, 2011

Satisfaction

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?

Saturday, December 24, 2011

Songs of the Season, Part 3

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!

Thursday, December 22, 2011

Songs of the Season, Part 2

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!

Monday, December 19, 2011

Songs of the Season, Part 1

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...

Sunday, December 18, 2011

The Thinking Person's Guide to Autism

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... :-)

Wednesday, December 14, 2011

Community Contributions

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!

Thursday, December 1, 2011

ABLE Accounts and "A Bad Place"

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.

Monday, November 28, 2011

Rise of the Planet of the Apes

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.

Thursday, November 24, 2011

Come, Ye Thankful People

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!

Monday, November 21, 2011

Recall Walker!

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!

Monday, November 14, 2011

Lucky

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!"

Tuesday, November 1, 2011

Princess Adventures

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.

Monday, October 24, 2011

The Fruits of Inclusion

"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.

Friday, October 7, 2011

It Hurts Me Too

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

Monday, September 26, 2011

Wide Open Spaces

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!

Thursday, September 15, 2011

Taking Action on CARA

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.

Friday, September 2, 2011

Go Jump in a Lake!

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!

Monday, August 22, 2011

Accommodation

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!

Thursday, August 4, 2011

Hey, Nonny Nonny

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!

Thursday, July 28, 2011

Ninety-nine Red Balloons

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

Thursday, July 14, 2011

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

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!