You Can't Judge a Book By Its Cover

The unprepossessing back of a turtle escaping through a mud puddle

The spectacular undercarriage of that same turtle

Rose and I have read two excellent young-adult novels in recent weeks: Out of My Mind by Sharon Draper, and Wonder by R.J. Palacio.  (Some parts she read for herself, but mostly we did them as read-alouds). Both books feature 5th-grade student characters, a girl named Melody in Out of My Mind and a boy named Auggie in Wonder.  Rose will be a 5th-grader herself this fall!  Each 5th-grade protagonist has a strong family with two parents and a sister.  Each is intellectually ahead of the pack when it comes to their school peers.

And each has physical differences that shape how they interact with the world, and how the world reacts to them.

Out of My Mind was recommended to me via Partners in Policymaking.  Melody, who narrates in first person throughout the novel, has cerebral palsy.  She has a photographic memory, she's addicted to words, she can control an electric wheelchair, she can point and tap with her thumbs, but she can't walk or talk or feed herself -- so the world sees only the disability, and only Melody has access to the rich inner life of her own mind.  At least at first... When you put an electronic communication device at the disposal of a girl who knows how to read, you can expect that some amazing things will happen!

Melody's school experience, though, is just ugly.  She's been shunted off to a segregated "special-needs" room since she started school, and only in fifth grade is the school beginning to experiment with "inclusion" classes, where everyone (students and teachers both) completely underestimates Melody and her "special needs" classmates.

One aspect of Out of My Mind that hit me particularly hard was Melody as Cassandra-prophetess, when she sees something that's about to happen or in progress of happening that she needs to warn someone about -- and nobody can understand her or even get that they're supposed to be listening.

The story also brought back strong memories of my experiences on high-school quiz team.  (No further details about the novel forthcoming here; you'll have to read it to find out how this fits.)  My junior year, I was the only girl and the only junior on our high school's state championship Hi-Q team, a high-profile televised experience.  Our come-from-behind win in the last two minutes of the championship round was about the most exciting bit of my entire high school career.  It was fascinating to look back at my own experiences through the lens of Melody's adventures.

Rose was interested in Melody, and made a few tentative connections to Joy and her iPad.  But it was Auggie's story in Wonder that really grabbed her.  August Pullman gets to start prep school in grade 5 after a childhood of homeschooling through facial surgeries and medical fragility.  A stew of genetic irregularities has left him with a face to which people react with disgust and ridicule.  It makes for a challenging 5th grade year.  Fortunately Auggie, like Melody, is clever and has a strong sense of humor.

I think Rose was particularly captivated by Auggie's story for several reasons.  One, the author (a first-time novelist!) really captured the rhythm of middle-school dialog.  It sounded like people Rose knows.  She also appreciated the current pop-culture references (Diary of a Wimpy Kid!  Justin Bieber!)  She also liked that Wonder wasn't solely narrated by Auggie -- you also got to hear parts of the story told by other kids from Auggie's school, plus his big sister and a couple of her friends.  Oh yes, Auggie has a big sister!  So Rose got to hear big-sis Olivia describe the family as a solar-system where her brother is the sun and the rest of the family orbits him and his needs.  (To what extent is that us?)  She got to hear Olivia talk genetics and how she carries a gene for part of Auggie's condition that might affect her own child-bearing decisions... a new idea for Rose, and something we could assure her was not part of her situation.  But there were some genetic-science words introduced that have relevance to our story too, like "mosaicism."

I liked that neither story set up their 5th-grade protagonists as saints.  For the most part, they resisted the temptation to make everything too OK at the end.  And they both did a great job of weaving the end of the story with threads that had been introduced at the beginning.

I had to wonder, though -- I don't think that it's a coincidence that both characters were written to have above-average intelligence and were able to outshine their typical peers.  Melody could demonstrate (given the right technology) that she didn't belong in the "retard room" as her typically-developing classmates cruelly called it.  Auggie's academic performance could withstand the scrutiny of mean-spirited parents who didn't think a kid with a face like his could possibly be worthy of their precious (and deliberately non-inclusion) prep school.

Anyone got any good recommendations for novels with protagonists whose disabilities affect their intellect?

Meanwhile, on the drive home from the annual Memorial Day sojourn in the Upper Peninsula (whence cometh the turtle pics), Rose started to write a story based on herself and Joy, inspired by Wonder and Out of My Mind.  Maybe I'll be recommending her opus to you one of these days.

Joy Rides a Bike

Summer is underway, and so is Joy:

Joy on a two-wheel bike with training wheels

She can go all the way up and down the long flat block you see here, with minimal assistance.  She was SO ready for a training-wheels bike -- and I'm glad, because it turns out that the 20-inch bike that fits her size is as large as the standard-size training wheels go.

Joy fought the helmet at first, and I was afraid we were going to have to spend half the summer doing a long, slow process of getting accustomed to the helmet (first we'll wear it for a count of five, then move on to a count of ten, etc.)  But the very first time we did helmet-practice on the couch with a little reward attached -- "first helmet, then candy" -- she blew past the count and wore it for several minutes with little protest.  So we took our little rewards to the street, and off she went.

Yes, I think summer is off to a pretty good start for Joy.

Not So Lucky As All That

Last November I wrote a post with the title Lucky, wherein Rose and I discussed how much things had changed from when I was in elementary school and kids with disabilities didn't get educated in the same schools as their typically-developing peers, if they got to go to school at all.

Her priceless summation of the situation:

It's so lucky for Joy's class that they get to know her and have her in school with them!

Those words are haunting me just now, as we're thinking ahead to next year with IEP-ing and with filling out questionnaires that will inform how next year's classes get assembled.

You see, although students with disabilities at Rose & Joy's elementary school are educated in classrooms with typically-developing classmates, it's not spread out evenly across the school. The school practices "clustering," whereby the kids with IEPs all get assigned into just one or two classrooms per grade, so that the special-ed staff can focus there and collaborate with just one or two regular-ed teachers. (A similar thing happens with students for whom English is a second language).

What ends up happening is that the ratio of disability to non-disability in the cluster-classes gets pretty far out of whack in comparison to the real world. Any behavior issues associated with the disabilites end up concentrated too -- and multiplying upon one another. And it can leave some folks thinking that students with and without disabilities really shouldn't mix, because look at all the problems that arise!!

It also means that Rose is not so lucky as all that.

Like her mother 40 years before... Rose has never been in a homeroom class with a student who has a significant developmental disability.

Just now, that feels incredibly unlucky to me.

Stuff We Don't Let Her Do

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

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

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

More surprising still were the photos on the camera.

Uh-huh. Joy had been taking pictures.

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

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

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

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

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

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

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

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!

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!

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...

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!

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!

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!"

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.

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

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!

Summer Activities (and, Budgets are Moral Documents)

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

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

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

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

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

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

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

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

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

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

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

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

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

Northwoods Adventures, May 2011

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

Balloons for the birthday girl:

And for her big sister:

We walked in the woods:

And blew bubbles on the pier:

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

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

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

And lots of people-peek play with the pompom:

And the rocking chair:

Rose learned to cast with a borrowed fishing rod:

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

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

Until we set out for home.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Sound of "Nigh-Night"

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

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

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

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

Joy Rocks the Field Trip

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

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

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

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

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

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

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

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

Fit to be Tied

Most Sunday evening at our church, you can find worshipers wearing clothing that runs the gamut from business-casual all the way to gardening or bicycle-wear. We've got a tradition of coming-as-we-are to worship, secure in the belief that God loves us as we are and we don't need to prove our devotion with fancy garb.

However, the other Sunday a group of young men from the Mennonite Voluntary Service household showed up wearing neckties, something we'd never seen them do before! One of the volunteers is getting married soon, and they invited us to help him get used to the idea of dressing up for the wedding by wearing ties on Sunday evening in solidarity. So ties have been appearing around the necks of unexpected people at church recently.

Last Sunday I saw a delightful interaction. Joy's former daycare buddy has a younger sister, an adorable curly-haired toddler, not yet two. Little Sister was sitting on her daddy's lap during the service, giggling over his necktie, which he never wears ordinarily. She was trying to stick the end of the tie into his mouth, and he was playing along, lipping at it and then pretending to spit it out. Just the sort of playful little back-and-forth interaction that automatically happens when you enter the average little tyke's world during the peek-a-boo years.

Not every family gets to have that experience with their toddler, though.

Joy certainly wasn't interested in that kind of back-and-forth interactive people play at that age.

So I'm feeling extra-blessed and grateful that we're getting it now.

There's been just an explosion of back-and-forth giggly-games in the past few weeks, building on the "funniest things in the world" snippets that I've posted about occasionally this past year. The game might involve yawning back and forth. It might involve her greeting one of her therapists with an expectant "woof! woof!" at the door (shades of John Elder Robison!) There have been "in, out" games involving toys and a bucket. There have been "on, off" games around stacker-toys (and, less ideally, light switches!) Lots of peek-a-boo, with variations: "bye-bye / HELLO!" "Where's the turkey? / GOBBLE-GOBBLE-GOBBLE!"

My favorite recent game, though, goes like this:
Joy comes over and leans on me for a cuddle and says "NNNNIGH-nigh!"
Then I hug her, stroke her hair, pat her shoulder.
Then she pops up with a mischievous twinkle and announces "GUCK-guh!" (wake up!) And then we giggle and do it all over again -- JoyDad and Joy are upstairs playing the nigh-night game as we speak.

Y'know, I could tie myself into all sorts of regretful knots, in the comparison that Joy is only NOW doing -- at the age of almost seven -- what comes naturally to a kiddo five years younger.

I choose instead to rejoice in our blessings, and to enjoy this delightful interactive peek-a-boo stage to its fullest.

Maybe I'll celebrate by wearing a tie to church tonight...

Mother's Day 2011

What a lovely Mother's Day!

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

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

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

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

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

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

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

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

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

Together!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

or

autism education ==} special education ==} education

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

Together.

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

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