Bladder of Iron, Will of Steel

Joy and I started the day with one hour and eight minutes in the bathroom.

One hour and eight minutes, before she finally gave in and let the first morning pee loose on the toilet.

She woke up dry, so she had to be holding something.  In fact, she woke up with dry jammie-pants but without a diaper!  (I thought I might have somehow forgotten to put one on her last night, but turns out she'd taken it off in the bed-tent.  Definitely dry, though.)

As we camped out in the bathroom, she drank three glasses of water, sat and sat, played game after game on her iPad. Occasionally she'd get up and jump around a little bit.  On one of those jump-arounds, at about the 45 minute mark, she peed just a little on the floor.  I quick swooped her onto the pot, and mopped up the little puddle, and expected the rest of the release any second.

That little bit of release was enough to enable her to hold the rest for another 23 minutes.

She gets a much-desired candy reward when the pee goes in the toilet.  I can't have the candy in-view-but-out-of-reach, though.  Tried that, it only makes her mad, and puts Mama at risk of getting swatted in the face.  Which never feels good, and is even dicier when Mama is balancing on the edge of the tub.  There aren't a lot of seats in the bathroom, and Joy gets the prime one...

Other than avoiding the candy fight, it was a relatively peaceable hour-plus as far as Joy's response was concerned.  Mama, though, gets antsy with all that cooped-up time.  After all, I don't get to play with an iPad while I perch on the bathtub edge.  And perch, and perch.

I've decided that I can only try these marathon wait-outs at times when I don't have any deadline at all on the other side.  Otherwise it comes across as "caving" when I call a halt, and I can't have Joy holding out with the expectation that I "cave."   (Pigeons pecking forever at the lever that once provided food, etc.)  So I can't do this on my work-mornings.

We're trying all the tricks.  Running water.  Dipping hands in water -- though she finds it puzzling that I'd let her dip in a basin but not the toilet.  Playing with the Pocket Pond app on the iPad to make splashy-water noises. Squirting water at her privates while on the pot -- apparently some kids respond to warm water, others to cool water.  Joy doesn't respond to either in the desired fashion.

It's quite clear that we've got contest-of-wills on pee-holding here. I'm also pretty sure that she's deliberately using the diapers instead holding in between toilet visits.  Before we started this training push, we used to find dry diapers during the day at least occasionally.  Now, not so much.

At the clinic they've got a higher tolerance for dribble, so they're working with her in underpants and just dealing with the soaked shorts.  At home, we really aren't ready to deal with pee-stink all over everything.  Hence the long bathroom sessions.

I was really hoping that after a couple of successes, Joy would "get it."  She'd understand what we were asking, realize how it felt, start working for the candy.

Alas, this has not yet come to pass.

Think good thoughts for us in our bathroom vigils!  The summer is waning, and I would purely love to be able to send Joy off to second grade with toilet training well underway.

---

Evening update -- All day we had the baseline 3-minute sits, the minimum that I'm requiring on our schedule. Then at a 7pm sitting, she'd filled her diaper both wet & mess, I was just having her go through the sitting motions after getting cleaned up, and lo & behold she PEED after just 1 minute!!! Maybe there's hope after all...

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.

Vote Barrett for Wisconsin Governor, June 5

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

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

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

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

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

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

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

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

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

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

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

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

We need to push back whenever and wherever we can.

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

Eight Years Old

Happy birthday, dear Joy!

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

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

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

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

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

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

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

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

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

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

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

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

Happy birthday, my sweet eight-year-old!

Joy's iPad, iPad's Joys

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

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

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

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

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

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

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

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

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

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

And voila, new photo icon created.

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

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

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

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

She had told me.

I just hadn't been close enough to hear.

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

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

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

Global Warming?

May 2, 2004 

Rose, pre-Joy

May 2, 2012 

Rose and Joy