Tuesday, June 28, 2011

Keeping Busy

Lots of busy, so far this summer.

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

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

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

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

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

Again. Dangit.

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

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

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

Friday, June 17, 2011

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.)

Wednesday, June 15, 2011

Perception Creates Reality

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

A stack of gears that she built herself:

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

Her echo-ey microphone:

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

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

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

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

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

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

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

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

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

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

How did we come to this?

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

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

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

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

Tuesday, June 7, 2011

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!)

Wednesday, June 1, 2011

Freezing the Future

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

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

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

Short answer: We don't know.

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

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

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

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

Giving people better choices about where they live and what kinds of services and supports they get to meet their needs.
The Family Care program provides Aging and Disability Resource Centers to help people figure out what assistance is available, and then (for those who qualify),
the new Family Care benefit, which combines funding and services from a variety of existing programs into one flexible long-term care benefit, tailored to each individual’s needs, circumstances and preferences.
Depending on the person's need, services might include things like: adult day care, home modifications, home delivered meals, supportive home care, health care services, daily living skills training, day treatment, pre-vocational services, supported employment and more.

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

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

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

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

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

The Wisconsin Families Forward group also has a Facebook page!

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

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

We've got to keep telling the stories!


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