Tuesday, July 24, 2012

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...

Tuesday, July 3, 2012

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.