Wednesday, December 19, 2012

Holiday Greetings and Gay Happy Meetings

There'll be holiday greetings
and gay happy meetings
when friends come to call --
it's the hap-happiest season of all!
-- It's the Most Wonderful Time of the Year

[So much pain swirling in our national conversation right now, so much urgent advocacy,
sorrow upon sorrow.  But I've been writing and advocating about painful things elsewhere.
Here, I've got two cheerful daughters, a snow-day tomorrow,
and lots of Christmas anticipation --
so let's talk holiday greetings and gay happy meetings!]

JoyDad and I attended a delightful musical-revue comedy the other weekend.  It was a rollicking four-character holiday production, starring four singing church-organist ladies -- all delightfully played by men, in a production by a company that "creates exhilarating, entertaining, challenging queer theater."

At one point in the show, just after the intermission, one of the church-organist ladies comes out alone on stage and serves up some earnest, hilariously off-pitch sensitivity training about "the gays."  First, she told us how to greet "a gay."  You turn on a brilliant thousand-watt smile, and wave one arm in a huge over-the-top dramatic circle of greeting, and carol out, "Hell-OOOOOO!"  We all got to practice, so we learned how to do it just right.

After several other tidbits, she then instructed us on how to recognize "a gay."  You see, she confidentially shared with us, gays can't whistle jazz.  So, in order to figure this out better, let's all try whistling together so-and-such classic by Charlie Parker... met by silence or muffled giggles from the audience as she whistles alone.  OK then, how about this-and-such Miles Davis standard?  Again, her solo whistle tails off into silence... and then she beckons the other organist ladies out to join her on stage, and nervously shares with them in a loud stage whisper:  "THEY'RE ALL GAY!"

And then the ladies fanned out onto the stage, pasted on thousand-watt smiles and greeted us with huge circular waves and a big cheery "Hell-OOOOOOO!"

Guess what greeting we went home and taught Joy the next day?

You see, stereotypes aside, Joy absolutely loves bright-eyed interaction and big gestures and dramatic, musically-spoken utterances.  She thought the big "Hell-OOOO!" was hilarious, quickly absorbing it and turning it into a game where she and a partner take turns echoing "hello" and "bye-bye" at one another.

Today, she and I were playing the game as we walked up the hill to school.  We met another mom on the way, and I prompted Joy to say hello.  And she gave the most adorable wave and recognizable "hello" -- our game had turned into something not overly dramatic at all, just a lovely greeting for a happy meeting.

Wishing you many, many lovely holiday greetings and gay happy meetings when friends come to call!


Saturday, December 15, 2012

Day 2

It's been a long time since I blogged about seizures.  Joy was still having seizures when I started Elvis Sightings in mid-2008, but we were well on our way to getting the just-right meds combo at that point. The last seizure we saw was on September 11, 2008.

As of this Thursday morning, it had been 1554 days.

But no longer.  On Thursday morning Joy had a seizure that was powerful enough to knock her down.  I'm pretty sure I missed the actual seizure itself, which must have happened while she was on the couch with her iPad while I was whirling around packing bags and wraps for school.  But when I got her up to put on her coat and go to school, she tripped over her boots and fell to the floor.  She fell again in the driveway a minute later, and then she was very sleepy and out-of-things for about an hour.  Clearly a seizure event with the sort of post-seizure sequence that we used to see all the time.

We've consulted with her neurologist, survived a blood draw, bumped up one of her med doses (which hadn't been changed since the seizures went away).  

So the count has started over again.  Now we're on Day 2 since the last seizure.

It would sure be nicer to have it be Day 1556.

Monday, December 10, 2012

Let It Snow!

It's been a mild, mild kick-off to the winter season in Wisconsin so far.  We didn't harvest our last Swiss chard until Thanksgiving, and we're still getting bits of thyme and sage.  JoyMama has enjoyed bike-commuting to work into December, and JoyDad has appreciated the reprieve from snow-removal.

Rose, however, was pining for snow, making wistful observations about the chances of a white Christmas.

Sometimes, though, when you have no snow, you make your own!


Joy and Rose kick "snow" on a pier (cattail fluff)

This photo is from Saturday, a clear, relatively-mild day for December.  That white stuff that Joy is gleefully kicking looks for all the world like snow, but look a little closer...

Close-up of cattail fluff on a wooden pier

That's not snow, it's cattail fluff!  Turns out that the brown part of the cattail is actually made up of densely-packed seeds, each attached to a bit of fluff to carry it away on the wind.  When you unpack a dried cattail, it explodes into more "snow" than you ever thought possible!  (Even up close, it looks a little like frost-tracings, doesn't it?)

Fortunately, at least to the girls' minds, we had no need to turn to the cattails on Sunday:

Snow on the tomato cages in our garden

Above is the scene in our garden, glorious sticky mantle-of-white all over the fence and the stacked tomato-cages.

Joy, age 8, in the snow

And there goes Joy, ready to revel!

It's beginning to look a lot like Christmas...

Saturday, December 8, 2012

O Christmas Tree

I've been photographing and commenting on Christmas trees in the Joy household since the blog began in 2008.  That year, in a reflection on boundaries, I said:
I didn't exactly imagine that we'd still putting our Christmas tree out of reach with a four-and-a-half year old, but such is the way of things around here. The "safe" place for the little artificial tree (as safe as it gets, anyway) is on top of the stereo cabinet. No glass ornaments, just in case.
Maybe next year, we could consider a real tree, I said.

Christmas tree 2008

In 2009, the little fake tree was up on the stereo cabinet again, and I wrote a longer and somewhat frustrated reflection to the effect that holidays only come around ONCE a year -- and how do we expect our kiddos who learn things by routine and repetition to master things that only come around as exceptions?  (Christmas comes but once a year, and Einmal ist keinmal!


Christmas tree 2009

In 2010, it looks as if I had other things to reflect on in December, including what happened when Joy encountered Santa Claus in the mall.  But if you look at our Christmas Day photo, there's that little tree up on the stereo cabinet again -- and the presents didn't come out until the girls were in bed Christmas Eve.  It looks like I pulled a Cheater McCheaterpants in January 2011 reflection on Inchstones -- not having actually taken a tree-alone photo, and the tree was down by then, I re-used the 2009 photo!  The "inchstone" that year, though, was that we were able to replace the tree with a potted plant when it came time to take Christmas down -- and the plant became an unmolested part of the year-round decor.  (Well, I think she's stashed little items in the pot from time to time.  But other than that!)

Christmas 2010, with tree

Christmas 2011, and I apparently had nothing new to say about the darn little tree, and can't find as how I took ANY real photos of it.  There were other good things happening with Joy, though.  And Rose came to the rescue with an arty shot on her new Christmas camera.  Maybe she was using the paranormal setting (her charming misreading of the label "panorama")?  Anyway, there it is, little tree up high once more.


Christmas tree 2011

And now it's Christmas 2012, and once again the time rolled round to decorate a tree.  December crept up on us fast this year, and I keep falling down on the job of early-purchasing an Advent calendar (it was something that my mother used to do for me, and she passed away in 2005, and darn it if I still haven't quite come to terms with the Advent calendar responsibility being mine.  Miss you, Mom!)  However, this year it worked out all to the good, because finding the bookstore sold out of Advent calendars, Rose and I ended up devising a home-made Christmas-tree Advent calendar for Joy instead!  Instead of opening fiddly little card-stock doors, Joy gets to move a numbered sticky-note each day from the "Ornaments" page to the Christmas tree.  Rose did all the artwork, and is so excited to see Joy move the ornament each day.  Joy, meanwhile, needs some support to make it happen, and is happier to take on the task some days than others, but she hasn't refused yet!  Here's how this tree looks -- don't you just love the "star" effect of the camera flash?


Christmas tree Advent calendar, 2012

And so this is Christmas, and once again we come to the tree... and perceptive readers will notice something just a little bit different this year.


Christmas tree 2012, with Nativity set
IT'S SIX FEET TALL!

Joy has come so very, very far this past year.  It was clear that this was a year that the big tree was worth attempting.  We were still a little bit too wary to attempt a real tree, given that there's water involved if a real tree were to take a tumble.  So we dug way back into the most-hidden of our storage -- we hadn't used our big artificial tree since we moved into this house in 1999!  We found it, though.  And Rose was ALL agog to help me disembowel the box, and put the tree together.  And Joy sat on the couch, playing with her iPad and taking it all in, in the indirect way that she has.  We called her over to help put some of the branches in, and then again to help us hang some of the easier ornaments.  She let us take her through those tasks, but didn't ask for more.  And she hasn't given the tree any trouble at all, in over a week.

The Nativity set, though, is a toy as well as a decoration.  Though the tree above it is off-limits, the creche is hers for the playing.  And she does, flawlessly making the distinction between the off-limits tree and the all-hers Nativity.  Her favorite characters are the camels.

= = = = = = = =

It turns out that einmal im Jahr (once a year) is not negligible after all.  She remembers.  She's learning.  We see it with all the holidays, not just Christmas -- she can collect colored eggs into a basket at Easter now.  She can knock on doors and take a piece of candy for her bucket at Halloween.

Next year, we're going to a tree farm to cut our own, Lord willin' and the creek don't rise.

Merry, merry Christmas!

Friday, November 23, 2012

Connecting With "Thank You"

It started with the prelude-hymn on the Sunday-before-Thanksgiving.
You've got a place at the welcome table,
You've got a place at the welcome table some of these days,
Alleluia!
Joy was sitting between me and her respite provider, fingers in her ears as the singing went on around her, but content enough to eat some pretzels and stay with us in the service a little while.

Then came the call to worship, a responsive reading:
The world is filled with the glory of God, and we say,
Thank you!
The hills and valleys are filled with colour, and we say,
Thank you!
The vines and trees are filled with fruit, and we say,
Thank you!
Our tables are overflowing with food, and we say,
Thank you!
Our life is filled with love of family and friends, and we say,
Thank you!
We fill this house of God with our voices, saying,
Thank you!
May the words of our mouths and the meditations of our hearts be acceptable to you, O God, as we enter into this service of thanksgiving and praise.
-- written by Carol Penner 
A light came into Joy's face as she heard me and the congregation chime in with the first "Thank you!" and she responded too, with an audible "geh guh!" into the breath between the congregation's part and the leader's part.  These were words she knew, and a sequence she could relate to!  I quickly brought the bulletin down to her eye-level, and spoke the next "Thank you!" with an extra smile and emphasis for her, and she spoke up again too.  By the end of the litany, I was holding her hand and touching the "Thank you!" with her each time it came up -- those pre-reading practices from school have broad application, it seems.

Such smiles and speaking up from Joy!  She'd never before connected with anything in a worship service quite so enthusiastically.  And in the glow of that connection, she was able to stay with us longer into the service than she usually makes it: through the next hymn ("Come, Ye Thankful People Come") and the lighting of the peace lamp and the Children's Time, which was also all about Thank You.

When we got to the Joys and Concerns time in the service, close to the end and long after Joy had bailed, I felt moved to speak up about what had happened during the call to worship.  I pointed out to my brothers and sisters gathered together there, that even though I didn't know whether Joy had been saying "thank you" or "you're welcome!" as she piped up during the call to worship, she had connected with "Thank You!" and that was enough -- and deeply moving to me.  And I thanked the congregation for making a welcoming space for Joy's participation to happen, on her terms.

We had a place at the welcome table, indeed.

I was further moved last night to find the following Thanksgiving Day Facebook status-update from the worship leader who had planned the service:
Lesson this week. All you have to be able to connect with is "thank you". That is enough. That is everything.
We've had so many thanksgivings in the past couple of weeks, they've kind of been tumbling over one another.  I could write about at least three new Joy-milestones we hit just yesterday in our Thanksgiving day-trip and family gathering!  The connecting-with-thank-you moment at church had receded in my mind amidst the other exciting happenings.

I thank my friend for bringing our own lesson back for me, in such well-chosen and meaningful words.

I share that lesson with you, dear readers, surrounded in its original Joy-context, so that it can be yours now too.
Thank you.

Thursday, November 22, 2012

Thanksgivings

I know several people who are posting daily "thanksgivings" throughout November, either on Facebook or on their blogs.  I didn't take up that challenge, mostly because committing myself to one more daily obligation, no matter how soul-nourishing, would have been -- well, committing myself to one more daily obligation.

But I do believe I could have blogged a Joy-Thanksgiving pretty much every day of the month.  It has been an incredible November!

Here a just a few of the Joy-Thanksgiving events of November.  Milestones, not just inchstones!

Joy's participation in her school music class annual program was more robust than it's ever been.  Her music teacher burned a CD of the songs in the program to send home, and we loaded them up on Joy's iPad so she could listen to them at will.  This year's show was in honor of Veterans' Day, so we had patriotic music mixed in with Joy's usual Baby Einstein soundtrack.  Her favorites among the program were This Land is Your Land (mama approves, even if they didn't include the populist-protest verses!) and a little marching ditty called I am Proud to be an American (not the Lee Greenwood "God Bless the USA" song, thank goodness.)  On concert day, Joy's class was stationed at one end of the risers, so Joy could stand or sit with her staff members next to her class.  She marched in place a little bit in the right place, and waved a little flag, and made it through the whole show.  Proud, proud mama!

Some days later, when GrampaK came over for lunch one Saturday, I was telling him all about the concert and Joy's participation.  Joy was on the couch with her iPad -- and as I told Grampa about the songs on the iPad, all of a sudden the iPad started singing I am Proud to be an American.  Which means that Joy not only followed our conversation and acted upon it, but she also must have gone deliberately to the music-program song list rather than playing Baby Einstein.  Oh.  My.

Then there's this e-mail message to share from one of Joy's school staff the week after the music program, which sent me over the moon for the rest of the workday:
Just have to share my goosebumps delight from the first ten minutes of [Joy] and my day.  Tons of language in context.  No cue prompts.  We sailed thru our multiple tasks and I can't stop smiling.  Wish u had been here to share
That day, something came home that made me smile even wider:  Joy's first homework.  Oh, we've had schoolwork tasks come home before, but they were always framed in terms of showing us what Joy's working on in school, rather than actually being called HOMEWORK.  I was surprised how deeply this affected me -- all it entailed was a square 4x4 grid, on which Joy was to place smaller paper squares, using the terms "take" and "put."  But the importance of it was driven home a week later, when I was asked by another kiddo on the schoolyard, "Does Joy ever have homework?" and I was honestly able to say, "Yes.  Yes, she does."

In the wake of all that, you might guess how much smiling went on during Joy's parent-teacher conference mid-month!  I was surprised to see Joy's team so well represented, having only been sure that the teacher and case-manager would be there, but her student-teacher/SEA and her speech therapist and her occupational therapist were all there too.  So much good news to share, together with ideas for how to tweak things even better!

The best piece of news from that conference, as far as I was concerned, was the piece of construction-paper artwork above Joy's locker.  It turned out that they'd had a class project making construction-paper clouds with rainbow bands dangling below, where each cloud had the student's name and each rainbow band carried an adjective describing the students.  Most students came up with their own, but since that's not Joy's scene just yet, the teacher invited the students to help come up with a rainbow of adjectives for Joy.  She said they were just tumbling over one another with suggestions, and the themes were all directly from the kids.  Here's what they came up with:


Sensitive
Outdoorsy
Technical (they refined this one from "computer-y" in admiration for her iPad mad-skillz!)
Swift
Beautiful
Musical


Even after just a couple of months, my daughter's classmates know her really well, don't they?  Because that rainbow there is an awesome representation.

The LEND trainee who came along to observe the conference was deeply impressed, and we had a fine conversation afterward about the importance of inclusion even when a student isn't in the classroom.  (There's a whole 'nother blogpost in there, my friends!)

But wait, there's more.

This past week, Joy was invited to not just one but TWO birthday parties, together with her sister.  On back-to-back days, yet!  The first party was for a neighbor and the venue was a bounce-house facility.  How perfect is that?  Joy bounced and bounced, and repeatedly tossed a bouncy-basketball up through a basketball net (from the bottom up, rather than making a basket, but who's counting?)  Then after an hour and a half of bouncing and sliding, the kids all herded into a room with tables for cake and ice-cream and present-opening.  And Joy sat down between two kids she didn't know, with Rose a little way down on the other side of the table.  Once we got her served with goodies and lemonade, I went over to the edge of the room and sat on the benches with the other parents.  And stayed there, while Joy competently ate by herself and drank her drink and hung out uncomplainingly!

While I sat, a gregarious dad with a German accent served me cake, and then asked me if that blonde girl in the green shirt was my daughter.  "Yes," I said, preparing for the usual autism-solidarity conversation: is she on the spectrum, I have a close relative who is, etc.  "She looks so much like my niece!" was what I heard instead.  "I did a double-take, she could almost be her twin!"  JUST LIKE ANY OTHER KID.  No disability-related content to the conversation AT ALL.  I can hardly remember the last time I had a conversation with a stranger about my daughter that went that way.

And then we had another party the next night, for a classmate of Joy's, who also has an older sister who's a friend of Rose.  This one was at a gymnastics-sort of facility, with crash pads and climbing ropes and play structures and swingsets and free arcade games like air hockey and basketball.

Joy shot hoops with glee, over and over.  Look at her go!


Among the guests were classmates both past and present, who are happy to interact with Joy but also to give her the space she needs.  Then crowning delight came when we learned that the birthday girl's mom had assembled a special goody-bag just for Joy, full of stimmy-delights instead of the pencils and Blow-Pops that interest her so little.



Daily Thankgivings are hardly enough.  We are grateful beyond words to see our daughters grow and mature and move forward.

May your own celebrations of gratitude be plentiful and delightful!



Sunday, November 18, 2012

A Cartoon for Rose

For my daughter who did this:

Budgets are Moral Documents (sidewalk around the Capitol building)
 and this:



"Hoop for Justice"



comes this absolutely perfect cartoon from P.S. Mueller:

Child hula-hooping with the "O" from a chalked "Obama"


Mueller didn't know he was drawing it for Rose, but he was.  I'm going to send him this blog post and tell him so.

The only thing that would make it even more apropos would be to dress the disapproving lady in a Madison Capitol Police outfit, since chalking now seems to be on the list of criminal activities since the Walker administration crackdown on First-Amendment-protected political expression in the latter part of 2012.

(Next post will be Thanksgiving, with heaping helpings of Joy!)


Tuesday, November 6, 2012

Election Day

The presidential candidates have made their final arguments.  I've been making a final electoral argument too, on the political sites I frequent, arguing that for many people whose lives are affected by disabilities, this election hinges on Medicaid.  (Prof. Paul Krugman of the New York Times has made the Medicaid argument too, so I'm not alone in this.)

However, when I went and looked at my closing argument regarding the Walker recall here in Wisconsin this past June, I realized that what I said then still does a great job of summing up this presidential election, from a different emphasis.  Here's what I said [with a few additions in square brackets]:

===========

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 [2011] 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.)  [This time around in Wisconsin it's the Baldwin/Thompson US Senate campaign, which has attracted more outside spending than any other national race this cycle other than the presidency and a Senate race in Virginia.]


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.

===========

Obama for President

Please vote.



Monday, October 15, 2012

Splashes, Splashes

Five and a half years ago, Joy had a five-word-phrase in her repertoire for a brief span.  It was a line from Ring Around the Rosy:  "Ashes, ashes, all fall down!"

I went back to the archive of team-messages that I've been using for group communication for years, and there it was in the seventh message (we're up to #1551 by now):
I had to work very hard not to laugh the other day when she flung her cup, and then sang out her version of "Ashes, ashes, all fall down!"
I'd forgotten that incident, but remembered hearing the phrase on at least two additional occasions.  And then... Elvis left the building, the sliders on Joy's mixer board slid into a new position, and the phrase disappeared.

Fast forward to this weekend.

Joy came home from school on Friday with a new piece of artwork, this one containing both swirls and dots.   This one had been created to the tune of Ring Around the Rosy, a tune that Joy had suddenly begun to request that day.  We also learned that she'd been excited to work with LeapFrog phonics toys at school, which she'd connected with at home in a big way right around the end of 2011.  And the Brown Bear theme had continued at school as well, evidenced in a copy of Baby Bear, Baby Bear coming home with her for the weekend.

It rained most of the weekend.  Ordinarily this would be a bummer, but we've had a long string of parched weeks, so the rain was actually very welcome.  And guess who got to go out and make splashes and splashes, stomping in the puddles among the fallen leaves?



We played Ring Around the Rosy in the puddles, and Mama substituted a new line for the "ashes" line (that probably isn't a reference to the Black Death, though it's an oft-told myth):  Splashes, splashes, all fall down! Joy responded with many splashes and stomps and giggles, and helpfully refraining from actually falling down.

Then something seemed to catch her attention.  She looked, leaned to the side, took another looong look.

"Joy, what do you see?" asked Mama.

The response grew out of Brown Bear and our stomping-splashes, and just about took my breath away.
I see bird -- stomp, stomp, stomp!
Six words, gentle readers.  Six in a row, one more even than our long-lost Ring Around the Rosy line, in an original combination.

She was working other spoken-combos this weekend, too.  She says them slowly, with great emphasis, almost with a period after each word.

I. Want. iPad!

I. Want. Help!  

I. Want. Cracker!  

I. Want. Bread!  (This last was a request for the infamous zucchini bread)

I haven't heard a spoken request for a hug yet.  But you'd better believe she was receiving, this weekend.



And as for me, I am so greedy.

I. want. more.

But there were moments to be lived in, this weekend, and each one was a miracle unto itself.

Thursday, October 11, 2012

Autumn

Two photos taken in the middle of town this weekend, at a conservation park right across the street from Joy  & Rose's elementary school.




To make a prairie it takes a clover and one bee,—
One clover, and a bee,
And revery.
The revery alone will do
If bees are few.
-- Emily Dickinson






Who knows what it is to be running?
Only [s]he that is running knows...
-- PDQ Bach

Sunday, October 7, 2012

Brown Bear Banned

The below tidbit came my way from a college friend on Facebook, who'd seen my post on Joy's "Brown Bear" moment.  The "banned" image came with the accompanying text below:

In 2010, a member of the Texas State Board of Education called for the removal of "Brown Bear, Brown Bear, What Do You See?" by Bill Martin, Jr. from the state curriculum. Why? The board member said that Martin's works for adults contain “very strong critiques of capitalism and the American system." Fortunately, someone pointed out to this mistaken board member that Bill Martin, Jr. was not Bill Martin, a philosophy professor and author of "Ethical Marxism: The Categorical Imperative of Liberation." Oops.

JoyDad's response was swift:

Brown Bear, Brown Bear, what do you see?
I see a struggle between the proletariat and the bourgeoisie!

JoyTeachers, take note.  We depend on you to convey to our daughter, in suitable terms, the enduring significance of the RED bird!

Saturday, October 6, 2012

Similarities (Row, Row edition)

Three years ago, I wrote a post titled Similarities.  The post listed a whole string of commonalities with a sweet young lady in Massachusetts and her family, whom we've never met except in the blogosphere.  But I know of no other child who is more like Joy than Rhema.

In September 2009, the post was about their shared love of window dancing.

Yesterday, I got chills when I found the following clip on the Rhema-blog, Autism in a Word.




If you close your eyes and just listen -- might have to turn the volume up a little, it's a phone-video -- this could be me and Joy.  We do exactly the same thing with songs, where Joy fills in the blank.  Row, Row is one of our favorites.  Joy requests it by grabbing an adult's hands, swaying, and crooning "Whoa, whoa."

Even that might not have been enough to nudge me to write this post.  But then I opened Joy's backpack when she got home from school, and I found these.

"Row, Row" pictures

Joy's been hard at work in art class again.  Two weeks ago, she made her first Song Spots art, dotting with a Magic Marker in time to music.  Last week, she used a paintbrush and dotted in time to "C is for Cookie."

This week, she worked in two different media, paint and crayons, producing the artworks above.  She had a different aide for yesterday's class, who didn't know "C is for Cookie" (Joy's first request) but they quickly settled on a different song.  The artwork for October 5 is brought to you in time with Rhema's song:  Row, row, row your boat.

One year, some time, some how, these girls must meet.  And their mamas, and their sisters -- we could even bring the dads along, if everyone's in the same country at the same time!  I wonder if Rhema and Joy would recognize the kinship that's so spine-tinglingly evident to their blogging-mamas?

I think they might.  Especially if there are windows to dance in, and familiar songs with just the right blanks to fill in.

Wednesday, October 3, 2012

Star of the Week

When you wish upon a star, your dreams come true.
-- Jiminy Cricket

Joy is Star of the Week this week in her class.

Her teacher went first, to demonstrate.  The Star of the Week gets to do a poster all about themself, bring a special snack, fill up the classroom Estimation Jar with something-or-other for the class to guess how-many, and a couple of other goodies.

Joy went next.

We worked on her poster during the weekend.  Lots of questions to answer, some of them to the best of our ability since Joy doesn't tell us directly.  (Favorite color?  Not sure -- we asked her, and let her pick a magic-marker as a way of telling us.  It came up pink, which I suppose is fair.)  Rose wrote the text, Joy did some "Song Spots" artwork, and here's how it turned out, with selective blurring on certain details:


I baked a couple extra loaves of our super-special zucchini bread with mini-chocolate chips to send for snack.  We filled the Estimation Jar with little Lincoln Logs, a task that we ended up doing several times at home because Joy was having so much fun dropping the logs into the jar and back into a basket.

I sent the poster and zucchini bread and estimation jar in with Joy, and then came back after lunch on Monday to talk about the poster.

When I arrived at the class, I met a rush of excited students who were practically falling over themselves to tell me how much they loved the zucchini bread!  They'd eaten almost every crumb.  It was clear they could identify with Joy on why this would be listed on the poster as her favorite food!

Joy was able to stick with the group for the entire poster presentation, her aide by her side.  Her classmates were interested to hear that she gets to sleep in a tent every single night!  When I shared that her favorite animals were monkeys and bunnies, one of her classmates who has been over to visit a few times in the past piped up about getting to see Joy's pet bunnies (no longer with us, alas.) 

But the real magic happened on the question about Joy's favorite book.  I'd put down "Brown Bear, Brown Bear" as our answer, and asked the class how many of them knew that book.  Every hand shot up!  And to cement the connection, I softly sang the first line: "Brown bear, brown bear, what do you see? I see a red bird looking at me!"

And then I was just about to move on to the next question, when we heard a quiet utterance from Joy.  She had picked up her aide's hand and begun tapping in rhythm, singing, "bow beh, bow beh..."

Joy wants to sing?  Joy gets to sing.  The class all joined in as I led them through a memorized rendition of the entire book, with Joy smiling and singing and tapping along.  They were all with me, all the way through. A glorious connection.

After the poster, I stuck around to help as the class moved on to a math lesson.  But first the teacher went in search of a book.  She didn't have a copy of Brown Bear in the room, but she did have "Baby Bear."  So while the class did math, Joy and her SEA went through the whole "Baby bear, baby bear" book over and over again. Joy simply glowed.

Last night at home during her bath and after, I heard Joy talking.  There were definite, separate words -- some one syllable, some two -- with pauses between, and different vowels and consonants.  It happened three different times.  It felt like there was a sentence there each time, but each time was different.  And I couldn't understand.  I was in awe, feeling something new and big pushing through, but not quite connected enough myself to understand what was there.

JoyDad said afterwards that Joy had been singing bits of Brown Bear to her therapist at her clinic session.  That might be part of it.  I'll listen for that next time, assuming that this wasn't an Elvis Sighting that goes away for goodness-knows-how-long.

But it might have been something completely new. I think there may be something big about to happen.  I'm wishing on my Star, because this just may be a dream waiting to come true.



Monday, September 24, 2012

Music and Speech

We got our piano tuned the other week.  Rose has been making great strides with her piano lessons, making the instrument sing each morning with her practicing -- so we wanted to be sure it was singing in key!  (Didja hear the one about how people keep having to break into song because they can't find the key?  Heh.)

Anyway, the guy who did the turning also plays a variety of instruments but is particularly skilled with the marimba.  He's won numerous awards, plays from a repertoire of over 250 songs, and has performed in Wisconsin's Capitol Rotunda.

He also has autism, and didn't speak until he was eleven.  Now, in his mid-thirties, his list of accomplishments is long.  In his work as a piano tuner, he is accompanied by his mentor, a retired piano tech who supervises his work and helps him stay focused.  His mom, who manages his scheduling, also taught him at home.  By the time we'd completed the whole transaction, I wound up with two of their CDs -- one of his performances, one of her compositions.

Mom's songs, as it turned out, were integral to his education.  Twenty-some years ago, public schools were open to students with disabilities thanks to the 1975 "Education for All Handicapped Children Act" (predecessor to IDEA) -- but in his case at least, they weren't very successful at figuring out how to serve him.  His mother was a kindergarten teacher, and she discovered that what he best responded to was music; that if you sang his lessons to him, the material would actually stick.  So her CD features the songs of his education, created as she put together a music-laced curriculum for him.

Joy, meanwhile, has gotten off to a fine start this school year.  I was concerned that the transition back into school, with a mostly new-to-her team and coming off a late-summer riddled with behavioral challenges, was going to be rocky at best.  But her new special-educator and teacher and student-teacher met with us repeatedly in August, processed the mounds of input we had for them, and felt like partners in the education of Joy before classes even started.

On top of that, Joy has been blessed with musical SEAs (special education assistants).  The past two years, she was met first thing every morning by an SEA who plays drums and teaches piano.  We were sorry to leave that aide behind as Joy moved up to 2nd grade, but simply delighted to hear her new morning-greeter SEA announce, "I'm a singer!"  Joy's affinity for melody and tempo was quickly evident to this new SEA.  We've been hearing updates about Joy echoing little tunes and tapping rhythms.

Then on Friday, she sent home this piece of artwork.


"Song Spots"

Joy, who had never made it all the way through art class before as far as I knew, hung in for a full 45 minutes with her singer-SEA on Friday and dotted this sheet in one marker-color after another -- in time to music.  It sounds like her art teacher got into the act with the music as well.  I know he plays the bass, and the note said "Teacher plays quiet jazz too!"

Teachers have been badly scapegoated lately in Wisconsin and nationwide, and SEAs are even further down the totem pole.  As a Madison teacher-blogger posted just yesterday:
SEAs choose to stay in a career where they are often sworn at, kicked and challenged. They do this, because they care about our children and they understand the importance of their role in our students’ lives. We need to start rewarding SEAs both financially and by treating them with the professionalism they deserve.  Most importantly, we must create school conditions that foster success for the students they serve.
Indeed.

In tandem with the new music delights, we've had a burst of words these past weeks as well.  The speech-settings on Joy's mixer-board are hitting new highs.  I now regularly hear at snack-time, when Joy finishes the first serving of goldfish -- "moh... CACK-uh!"  Not too long ago, when Joy was angling for her iPad (which was busy charging up on the other side of the bedroom door), we got a three-word prompted utterance out of her: "I... want... iPad"!  Heck, just yesterday JoyDad was watching football with her, and was teaching her to raise her arms and say "Touchdown"!  (Next on the list of sports-speak to teach her will be "Go Bears!")

Music to our ears.

And yet, while all this wonderful music and speech and overlap between the two is happening on the home front, down at Wisconsin's Capitol, a new Chief of Capitol Police has been tasked with squelching musical free speech in the Capitol Rotunda.

I've blogged about the Solidarity Sing Along before: red heart balloons, and holiday defiance in the face of an attempted December crackdown last year.  Since March of 2011, the Sing Along has gathered daily to continue expressing opposition to the ongoing depredations of the Walker administration.  This remarkable resistance-movement has been a thorn in the side of the Republican regime since the singing first began.  They tried to squelch us last December with a ridiculous, unconstitutional re-interpretation of Capitol permitting rules, flying in the face of the Rotunda's rich history of being a public square, intentionally designed with acoustics suitable for free political expression.  We showed up by the hundreds in December, daring them to arrest us all -- and, in large part due to the thoughtful leadership of the previous Capitol police chief, no arrests were made and the Sing Along continued.

Now, however, the arrests have begun.  Chief David Erwin, a former Scott Walker bodyguard, has led the Capitol Police in an anti-singer campaign.  The arrests and citations have targeted the people who attend the Sing Along most frequently.  While Erwin gives interviews complaining about disruptive protesters who go around "terrorizing" tourists and Capitol staff, the arrests are for holding signs.  Or banners (like the one held by JoyMama the rabble-rouser in the red coat below).  Or for attending an unpermitted event, or for sections of the Administrative Code that have never been interpreted in this way before. Despite repeated requests for clarification, the Capitol Police are declining to specify what activities might be deemed citation-worthy on any particular day.  They've taken to showing up at people's homes and workplaces to deliver citations, without having approached the individuals at the Capitol at the time of the supposed infraction.  It's intimidation, and they're pairing it with a cynical propaganda campaign that Rebecca Kemble wrote about compellingly in The Progressive the other week: The Two-Pronged Assault on Dissent in Wisconsin's Capitol.




The citizen-lobbyists of the Solidarity Sing Along believe that our permit to lift our voices in musical dissent is contained in the following words of Wisconsin's Constitution (Article 1, Section 4):



The right of the people peaceably to assemble, to consult for the common good, and to petition the government, or any department thereof, shall never be abridged.


"What part of SHALL NEVER BE ABRIDGED don't you understand?"

And if we poke a little bit of fun at Chief Erwin with masks and signs, that too is free speech, a bit of political theatre to bring home our message.  We gather and sing in peace, but we are determined.  We intend to keep singing until Wisconsin is back on the right track.  Even then, we will continue to be involved on a new level.

There's too much at stake -- and my Joy, who delights in rhythm and song, is at the heart of the future I'm fighting for.

See you at the Capitol.

Tuesday, September 4, 2012

Ode to Joy

On the occasion of sending my daughter off to her first day of second grade: a YouTube video of an orchestral flashmob, that Joy and I have listened to together repeatedly this past weekend.



I'm sure that part of why she loves it is that she knows the tune so well from Baby Einstein.

I love it because it's so soaring and beautiful -- and the resonance of the title as Joy starts a new school year.

To Joy, my second-grader!

Sunday, September 2, 2012

Product Hits & Misses: Keeping the iPad Audible (and safe)

Can you hear me now?
Can you hear me now?
Can you hear me now?
- Verizon wireless commercial

When we look back at the summer of 2012, I think we may remember it as the summer of the toilet training -- and of the iPad.

I threatened way back when to do a bunch of product reviews around Joy's iPad equipment and apps.  I naively figured that I'd work my way down Joy's list of apps and tell you all about them.  But at the pace I'm blogging versus the pace we're adding apps -- yeah.  It's not going to happen quite like that.  What I decided to do instead was to create a separate page that will represent a running list of her apps, with notes (see the new tab at the top of the blog!)  As well as being a good way to share, I figure it will be a good record for me, too.    I'm also resurrecting my "Product Hits & Misses" category, one I haven't used in quite a while.  The old ones are chock-full of useful information though, even across several years' time.

On to the product reviews!

Back when Joy's speech therapist was evaluating iPad technology with Joy, but before I'd had any chance to explore the iPad myself, she noted a concern about the iPad's volume levels.  She wanted Joy to be able to use the iPad to speak above a noisy classroom if necessary -- and indeed, the iPad's speakers are not among its most highly-praised features.  So she recommended that we look into external speakers.

When we did so, we found that most external speakers connected to the iPad via cords, which absolutely wasn't going to mesh with our active, tough-on-equipment young lady.  There was one product, though, that combined external speakers with a tough-looking case, complete with carrying handle: the iAdapter 2 from AMDi.  It's a pricey product, at $265.  The reviews looked good, though, and for what we were trying to do it was about the only reasonable option. So we pitched it, together with the iPad and ProLoQuo2Go and a couple other apps, for funding via Wisconsin's Medicaid waiver for children's long term support.  And we got the whole shebang.


The iAdpater encases the iPad in a 2-part assembly that fastens together with nine screws.  The speakers sit behind the iPad.  The case has openings for the front and back cameras and the iPad recharging plug, while the the opening for the Home button has a removable sliding cover.  (Joy figured out how to slide it open and get to the Home button pretty quickly.)  The case covers the iPad's volume controls, offering instead a 3-position volume switch, Hi/Lo/Off.  The case offers its own Sleep button that sits atop the iPad's Sleep button; the iPad's rotation-lock / mute switch is not accessible without unscrewing the case.

For the most part, we were pleased with the iAdapter sound quality.  We found that we seldom wanted to turn the iPad's internal volume higher than about three-quarters; Joy generally prefers the iAdapter volume switch set to "Hi."  We did run into at least one situation where an app wouldn't play well with the iAdapter -- in the Whizzit 1-2-3 counting app, some of the spoken instructions were inaudibly soft, while the rest of the directions and sounds were fine.  When the iPad was removed from the iAdapter, the problem disappeared.

Of my two other concerns with the iAdapter, one is an issue that affects all users, and the other is more specific to Joy.

The universal issue has to do with the fact that the iAdapter itself needs charging, separately from the iPad.  It comes with a cord and a wall-plug adapter for the purpose, which is great.  However, there's no indicator to let the user know how far the battery has run down, or how close the iAdapter is to being recharged.  We've never run it all the way out, so I don't know what would happen.  Does the iAdapter just go silent, and would the cause be obvious?   Meanwhile, we learned that we couldn't charge both the iAdapter and the iPad in a single standard 2-socket wall outlet: the wall-plugs are too big to both fit simultaneously.  You'll need either a powerstrip or two wall outlets close together.

The other issue is more Joy-specific though it applies to other kids like her:  girlfriend is tough on equipment. When Joy gets frustrated, stuff goes flying.  The iPad in its iAdapter case has gone flying down the stairs a couple of times, along with various lesser flings, since we got it at the beginning of the year.  Soon we began to hear little rattles within the case.  When I opened it up, I discovered that the inside of the case isn't as tough-looking as the outside.  The iPad is essentially held in place by slender plastic tabs, and several of these tabs had begun cracking off.  After several flinging incidents, the tabs had crumbled enough that the iAdapter case began to rub the wrong way against the volume control, causing the volume to suddenly mute at inopportune moments -- a development that Joy did not appreciate.

The tech support fellow I corresponded with at AMDi was extremely helpful.  He answered e-mail promptly, did a fine job of diagnosing the volume issue, and set things up so that we could send the iAdapter in for free repairs even though technically the flinging damage was not covered by warranty (and if it happens again, we're on our own.)  He also filled me in on the design principle behind the relatively-fragile internal support tabs.  Apparently they function like crumple-zones on a car, designed to absorb impact at their own cost in order to protect the cargo.  Of course you'd rather have your car-body crumple in an accident rather than your own body!  Turns out that both with iAdapters and with cars, the safety/protection features are secondary functions, and the crumple-zone protection is a one-shot affair.

Before I packed up our iAdapter to send in for repairs, we needed something to keep Joy's iPad usable and safe in the interim.  After a bit of surfing around, I settled on the SuperShell from M-Edge ($34.99).
There are several similar products out there, apparently.  The SuperShell is made of the same kind of material as Crocs footwear. It doesn't have any amplification qualities, though it does have a little cut-out for the iPad's speaker.  There are also cut-outs for the cameras and the charger plug.  The volume control and sleep button are accessed via partial cut-outs; the rotation lock/mute button is covered.  To install the SuperShell, just stretch it around the iPad and it springs tight.

What really sold us on the SuperShell (besides the awesome hot-pink color option) was this video, wherein the interviewer flings a SuperShell-clad iPad into walls and the floor of an exhibit hall:
 

The SuperShell really does work just the way it does in the video.  Joy has tested it, repeatedly.  It bounces.

The one criticism we have so far is that the cutout for the charger plug doesn't really let you get the plug in and out, so you have to pull the SuperShell off that side of the iPad to do the plugging in. But that's easy to do.

After the SuperShell arrived and we sent off the iAdapter for repairs, we learned something interesting.  The iPad on its own was actually PLENTY loud.  I'm not sure what the concern was in the first place.  We actually find ourselves repeatedly diving for Joy's iPad to turn the darn volume DOWN (she has become adept at adjusting it loud-where-she-likes-it.)

And the SuperShell is so cute, and we feel confident that the shell itself is not going to break when flung...

We actually never did re-install the iAdapter.  We probably ought to find another good home for it.

Thursday, August 2, 2012

Priceless.

The Potty Journey: Guide to Toilet Training Children with Special Needs, Including Autism and Related Disorders, by Judith A. Coucouvanis:
$14.90 at barnesandnoble.com


Bag of Twizzler Bites, for incentives: $1.99


Seven pees out of nine toilet sits at home today (plus another at clinic):

PRICELESS.

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.