Parenting is like Curling...

It isn't often that I have an insight that drives me back to the blog these days, but this was one for sure.

Throughout these Winter Olympics just past, I (and many of my fellow Americans) have been in turns fascinated and bemused by the hours of curling that appeared on our televisions.  It looks so simple, something that anybody could do -- and yet, it's clearly an elite and exacting sport, with enthusiastic fans. And despite watching what felt like hours of curling as the Olympics went by, I ended up with no better grasp of the rules of the game than when I started.

It was on the day of the closing ceremonies when it hit me... parenting is like curling.

I was helping Joy get dressed, a process that still takes a fair amount of assistance on my part, but I've been working to figure out how to fade that assistance bit by bit.  How much, I wondered, do I actually still need to be smoothing the ice in front of her on these tasks?  Am I sweeping more than I need to, will that actually hurt in the long run?

But hey now, I thought... this isn't just about me and Joy and a pair of recalcitrant socks... this is about ALL OF US.

And just like that, a meme was born.

Parenting is like curling.

We launch our kids across the ice as best we can, and then

it's a long run of split-second decisions as to whether to sweep

the ice in front of them or not.  If we make it too smooth,

they're gonna slide off course.  But without at least some

smoothing, will they get to where they're meant to be going?

And the rules are SO confusing!

Enjoy, and let's see what summer sport gets all the airtime in Toyko in 2020!

Ars Brevis

This warm September afternoon, Joy was playing on the computer.  She's come a long way from the "click and pull" revelation of January-before-last, to the point that she navigates all over the place, very competently.  Sometimes she even likes the navigating better than the content at any given page!

I was working on my laptop nearby, but not quite paying enough attention to notice that there was some ball-point pen usage going on in addition to the computer games.  When it was time to go upstairs, suddenly I noticed that Joy had scribbled all over one of her shorts-clad legs.

Since I haven't been in blogging mode and don't post much about Joy on Facebook, taking a photo didn't cross my mind.  Instead my thoughts went immediately to strategies for cleaning up, given that I hadn't planned a bath for this evening.  I was inordinately proud at my success in making clean-up an interactive game on the couch, scrubbing with a wipe and then waiting for Joy to prompt me to scrub again.

It wasn't till the pen-marks were all gone that it hit me.

Could I remember one single time where Joy had picked up a pen and drawn something, ANYTHING, on her own with no prompting from a parent or sister or anyone?

No, I couldn't.  Not other than iPad drawing games.  I asked JoyDad, he couldn't either.

Her very first unprompted pen-and-ink drawing... and I had effaced it almost immediately, with not so much as a photo for the record.

Art is fleeting.

=====

(As I'm typing this, I look up at the computer where she's game-playing again... and it's a "Peg & Cat" drawing program.)

Iconic Video

Long time no post -- life is busy, mostly in good ways.  Joy is ten years old now, and almost done with her third grade year.

I've been posting FB-sized bits and pieces on the Elvis Sightings Facebook page, but every once in a while a tidbit comes up that just cries out for a blog post.

Like Joy's video choice-making.

Two years ago, I posted about how Joy was making video choices via the ProLoQuo program on her iPad.  We'd taken photos of a bunch of her video boxes to put into the program, and she could choose by tapping the resulting photo icons.

Well, we've moved to the point where she's got a little more direct independence than that.  She now has access to the video shelves directly, so she can look at all the videos and pick one off the shelf.  She still has to bring it to another family member to get it started, but the intermediate ProLoQuo step has disappeared (and she can now verbalize "I want vid-ee-oh PLEASE!")

Even back when she was choosing with ProLoQuo, though, she'd inspect the video box, flipping it to the back cover to inspect the little stills on the back -- most of the video-box-backs have two or three screenshots like the white-bordered ones below.

Then after examining to her satisfaction, she'd give one of the screenshots a decisive finger-bop before handing the box over to get her video.

I don't know why it took me till now to figure out...

that she's generalizing the ProLoQuo/PECs icon selection to the physical video box!

Tap an icon to choose.

What a clever, clever young lady.

The Device Which Shall Not Be Named

It's been another summer of Harry Potter in the Joy household.  First one was Mama's Harry Potter summer a couple of years ago, when I decided that I really needed to be able to tap into this cultural phenomenon -- and got totally sucked in, to the point of inhaling all seven books in something like six weeks.  This summer, it's Rose's turn, and I get to re-experience it.  She's been reading, I've been reading aloud to her, and we're halfway through the movies too.

For Joy, meanwhile, it's been another summer of the iPad.  She's been making great strides, mastering new apps and various parts of old apps that used to stymie her.  We've even been able to download Angry Birds again!  First time around, she insisted on catapulting the birds from right to left (i.e. off the screen in the wrong direction) and then getting very frustrated, to the point that we had to remove it from the iPad.  This time, she's flinging them correctly, and has even figured out that with some of the birds, you get the most out of them by tapping again in flight.

Joy loves her iPad so, she'd probably play with it all day if she could.  But not only won't it hold a charge that long, she needs to do other things as well!  So we try to distract her, get her thinking about different things, tell her the iPad is "resting" while it re-charges.  We need to be careful, though.  If she's been distracted, and we accidentally say "iPad" aloud, she'll be reminded and start anew her "I want my iPad please" campaign.  (Indeed, she does say that phrase, complete with "please" both verbal and ASL.  YES!)

So we've found alternate ways to not-say iPad.  "The device," we'll say.  Or, with a literary twist on "He who shall not be named" in the Harry Potter books, we'll call it "the Voldemort."

Ah, but Joy is a clever and motivated young lady when it comes to the device-which-shall-not-be-named.

Yesterday Rose and I were having a Harry Potter read-aloud session in Joy's presence, as she played with non-iPad toys.

And I read the following line:

"Voldemort!" said Harry furiously.

And Joy said:

iPad! 

Mother's Day

It's Mother's Day, and Facebook is full of photos and memories and memories-in-the-making and tributes to amazing mothers and radical mothers and those whose families are not bounded by traditional concepts of family.

Lots of tangled emotion around this day.

I was thrilled to find the below piece of artwork in Joy's backpack on Friday!

And check out the message from the back of the painting:

Task = 10 min on task
Prompt + Model
Some Hand Over Hand
Outcome = "Priceless"

This quote says a great deal about how things are with Joy's educational journey this year.

First - that she has incredibly dedicated teachers, turning theory into practice into PRICELESS

Second - that PRICELESS takes an awful lot of work, theory, support.

Third - that we've come a long, long way.

Fourth - that there's rather a long way yet ahead of us.

I learned even more about the artwork in an e-mail exchange when I wrote an e-mail with a thank-you and a couple more questions.  (What, these lazy union-thug-teacher-types actually answer e-mail over a weekend?  Why, um, as a matter of fact -- yes, yes they do.)  

The passion for [Joy]’s watercolor originated from the tulips she and her class planted last Fall in the front of the school. Now you’ll take note they were in splendid bloom last week and we went outside to observe, write, and paint. Two classmates and [Joy] and I settled in at the horseshoe table where first we watched then I offered her choices of color which increased her attention to task. No kidding with little hand over hand you got a lovely swoop and motion piece of art. ... [JoyMama], I am blown away daily when she initiates or comes to her learning table so naturally.

So much to be thankful for.  So very, very much.

And yet, yesterday I was not in a very good place.  I found myself wistful about the little plastic stand in which the artwork had been lovingly placed.  The backpack had been tossed around quite a bit, without Mama knowing that it contained anything so precious -- and by the time I opened it, the stand was broken into three pieces, not harming the art but not possible to repair.

Many second-graders, with such a treasure for Mama in the backpack, would be brimming over with the delight of the gift they were about to bestow.  We'd have been digging in the backpack before we even left the school yard, or maybe refusing to let the backpack open, carrying it home like the crown jewels and teasing Mama about the secret.

Did Joy even know that the art was in her pack?  Did she know it was for Mama?  Did she remember that it had been in a plastic holder before?  Did it bother her that now it wasn't?

There was another bit of the e-mail that rocked my boat too:

Your other treasure, the pencil topper as well was completed with her Buddies.

Pencil topper?  What pencil topper?  I didn't know anything about a pencil topper.

I had to go back to the backpack and look -- and fortunately there it was, in the take-home folder that I'd failed to open in my mixed delight and angst about the beautiful painting and the shards of plastic.  (The stem of the flower is a pencil.)

This time, I found myself wistful that I'd missed it on the first round, and once again missing the component that would have involved the excitement of Joy presenting her creation to me.  All the overt excitement had to come from my end -- "Prompt + Model" -- sigh.

Two things helped pull me back out of the wistful place.  Two things from Facebook, as a matter of fact.

One was a post called "Happy Mother's Day to Moms with Kids with Special Needs."

Often the child who made her a mother can’t understand a holiday, can’t carry a tray to give her breakfast in bed and won’t be bringing her a bunch of violets or a card made all by himself. These moms celebrate their day with their different child in a different way. 

And celebrate they do. They find joy in the knowledge that they are nurturing a child’s spirit as well as her health. They take satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Each of her child’s achievements is at least partly her own. She knows the value of her efforts and the importance of keeping a positive attitude and counting the blessings of every day.

So many things to celebrate.  SO many things to celebrate.  So MANY things to celebrate.  So many things to CELEBRATE!

The other was a video-setting of a speech made at Kenyon College in 2005.  The title on the video is perhaps a little breathless ("The Earth-Shatteringly Amazing Speech That’ll Change The Way You Think About Adulthood"), but the content is a powerful reminder of the importance of choosing one's emphasis, choosing one's attitude.  A reminder that it's all too easy to let annoyance and pessimism be the default path of least resistance -- when the more aware, the more educated path involves a deliberate self-reminding of that which is sacred in the most mundane.

Usually I do a pretty good job of reminding myself, but this weekend I did need the reminder.

And this, here... this is sacred, and actually not mundane in the slightest!

Happy Mother's Day!

And now, Joy and I are going to go out and play in the sun.

Light Up My Blue Suede Shoes

Thanks to TJ Mertz for alerting me to this image --
and congratulations to TJ on his election to the school board!

I've been Elvis-Sighting blogging since mid-2008.

The United Nations first celebrated April 2 as World Autism Awareness Day in 2008.   This April makes five years of Autism Awareness Day/Month that I've blogged through -- and mostly ignored.  Flipping back through all those Aprils, I've not once used the phrase "Light It Up Blue" for autism.

It's not that I'm opposed to autism awareness.  By all means, let's be aware!  

But let's not be scared, or scare-mongers.  And let's be aware of what people on the autism spectrum are saying about themselves, their lives, and what would make this world a better place.  (Hint: there aren't a lot of light-it-up-blue fans on the spectrum.)  And let's not get stuck in awareness as the be-all and end-all.

There are changes in the wind, when it comes to Autism Awareness / Autism Acceptance.

Adults on the autism spectrum are leading the way -- the Autistic Self Advocacy Network (ASAN) has been promoting Autism Acceptance Month, and there's been some magnificent (and searing) blogging going on.

And those efforts are beginning to echo among other autism-related organizations as well.

Here's what the Autism Society of America had to say on Facebook yesterday:

IT'S NATIONAL AUTISM AWARENESS MONTH! Please help share our message far and wide this April. We must begin to change the national discussion on autism and other developmental disabilities to full acceptance, value and dignity for all who live with autism.

And here's a 2013 Autism Awareness Day quote from Ban Ki-moon, Secretary General of the United Nations:

Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential... 

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.

I'm glad that 2013 is the year that Elvis.com decided to get in on the act with Photos of Elvis in Blue for Autism Awareness Month.

No blue puzzle pieces on this blog... just Elvis Sightings, blue suede shoes, and celebration of how far we're coming, while recognizing how far we still have to go.

An Honor

"A burden," Wisconsin state representative Dan LeMahieu (R-Cascade) called my daughter, speaking before a gathering of school board members and public school administrators in Madison last week.  "A burden on our schools."

OK, he wasn't singling out Joy as an individual.  He was talking about students with special needs in general, you understand.  But especially the more disabled ones, the more expensive ones. Speaking in Joy's own school district, about students with extra challenges... so yes, in a very real way, he did refer to my daughter as a burden.

Rep. LeMahieu probably didn't know it, but his choice of words has a long and dishonorable history when it come to people with developmental disabilities.  Consider the words of Samuel G. Howe, 165 years ago, speaking in 1848 before the Massachusetts legislature on the subject of people with developmental challenges (emphasis mine):

This class of person is always a burden upon the public.  Persons of this class are idle and often mischievous, and are dead weights upon the material prosperity of the state.  They are worse than useless.  Every such person is like a Upas tree, that poisons the whole moral atmosphere about him.

At least Mr. Howe was "only" arguing that people with developmental disabilities should be institutionalized apart from the rest of society, thus setting up over a hundred years of segregation and horrible conditions at immense taxpayer expense.  At least Howe was "only" recommending putting people away, not putting them to the unspeakable experiments and gas chambers of the concentration camps, where people with disabilities were tortured and slaughtered not a century later.

Speaking of poisoned moral atmosphere -- in the year of my own birth, 1968, some so-called thinkers were still stuck in the same atrocity-level patterns.  Here are the words of "ethicist" Joseph Fletcher writing in the Atlantic, arguing that putting to death was an acceptable choice for infants with Down syndrome: "True guilt only arises from an offense against a person, and a Downs is not a person."

Let that one sink in for a little bit...

Forty-some years later, my wonderful daughter is a welcomed and contributing member of her classroom community, together with her delightful and accomplished classmate who has Down syndrome, guaranteed by our country the right to a free and appropriate public education.

"A burden," Rep. LeMahieu called them last week, in the language of those who would have denied these girls their humanity not a generation ago.

Then an orator from the audience took the microphone, a school superintendent from Pulaski, Wisconsin by the name of Mel Lightner.

Dr. Lightner drew applause from the crowd as he spoke truth to power.  He identified himself as the parent of a student with special needs, as well as a school administrator.  And he reframed the education of students with disabilities in these words:

I do want to make one comment before I get to my question, and I don’t know if the gentleman up there meant this, but you said special education is a burden – that’s what he said, is a burden to school districts. 

Actually it’s an obligation, a responsibility, and it’s an HONOR to educate children with exceptional educational needs or special needs.

As the applause swelled, Dr. Lightner moved to his next point, to take on and expose the special needs vouchers, a harmful ALEC proposal that was blocked in Wisconsin last year.  Unfortunately this year it's been slipped into the 2013-2015 state budget where it's even harder to kill, greased with barrels-full of out-of-state campaign cash.

You should listen to the audio clip itself to hear the scorn drip from Dr. Lightner's words as he speaks of the special needs "scholarships," as they're called in the budget, as he tears apart the manufactured demand for this proposal that did NOT originate in the communities of Wisconsin.  Here is the transcript:

By the way, my name is Dr. Mel Lightner, I’ve been a school superintendent for twenty years in the state of Wisconsin – and I am alarmed and shamed at the movement to privatize and de-fund public education.  I think that’s the national movement, and at least two of the people up there are part of that movement in my eyes.  Kudos to [Sen.] Jennifer [Shilling, also of the panel], who’s a strong advocate for our children.  

Ladies and gentlemen, we are at the crossroads in the state of Wisconsin.  And I want to get back to the special education issue, because I have a special needs child.  Here’s my question.  My question is this: Special education “scholarships” or vouchers, private school vouchers, we have a mass of Wisconsinites who have come to you and said “LET’S DO THIS”?!? 

I don’t see it.  I don’t see it in my community, I don’t see it in the state, I don’t think you’re being responsive to the Wisconsin people.  You’re part of a national movement that is hunkered down and coming through with massive private dollars.  I think that’s where you are, and my question is: Is that not the case?  [Applause]

I wish that I could tell you that Rep. LeMahieu and his fellow panelist from the Joint Finance Committee, Sen. Alberta Darling (R-River Hills) saw the light and were swayed by Dr. Lightner's words.  Alas, this was not to be.

Senator Darling didn't address the source of the voucher legislation, responding with rote talking points about "choice."  Even worse, Rep. LeMahieu defended his use of the word "burden."  He didn't really mean "burden," you understand, it's just that special needs students cost more, which makes them a financial... well, BURDEN!  He kept using that word, over and over, just like his counterparts in shameful years gone by.

It's not a burden, Rep. LeMahieu.

These are our children.  And in the words of Dr. Mel Lightner of Pulaski:

It's an obligation, and it's a responsibility, and it's an HONOR.

Stop Special Needs Vouchers, Wisconsin!
(Click on the link to learn more and to join the movement...)

She Told Me, I Listened

She pulled down her pants this afternoon, in the middle of the living room.

I took her to the bathroom, where she promptly peed on the pot.

She told me.  I listened.

So small.  And yet, I can't help but think that the earth moved on its axis just a little bit!

A Letter on Sequestration

I sent a letter this morning to four people: President Obama, Senator Ron Johnson, Senator Tammy Baldwin, Representative Mark Pocan.
=======

Dear President Obama,

Yesterday afternoon, my husband and I sat down with a team of seven educators and administrators to write this year's Individualized Education Program (IEP) for our daughter's upcoming school year.

Our daughter Joy is a cheerful, bright-eyed second-grader, full of energy and laughter. She can ice-skate, she can snow-shoe, she can manipulate an iPad like nobody's business! Joy also only speaks a few words. She has a sobering catalog of developmental challenges, including autism, epilepsy, and a rare genetic condition called Linear Nevus Sebaceous Syndrome.

The team around that table had been working with Joy since the start of the school year, putting in untold hours above and beyond the school day to make our daughter's education possible. Tears threatened to flow as we evaluated Joy's phenomenal progress this past year, and pegged her reading-goal for next year to the emerging-skills level for first grade. First grade reading skills, for a child who as a pre-schooler was unable to imitate, unable to do a 3-piece puzzle, unable to follow most one-step directions!

And then we returned home, and read this evaluation of the effects of sequestration from the National Council on Disability:

* $978 million in comprehensive funding cuts would affect 30.7 million special education students.
* Funding for special education, specifically, would be slashed by nearly $600 million, reducing supports for students with disabilities to 2005 levels.
* Federal funding for the Individuals with Disabilities Education Act (IDEA) will be reduced by 28 percent, totaling a loss of one billion dollars.
* Close to 15,000 special education teachers could lose their jobs resulting in larger class sizes.

Tears DID flow as we considered the impending devastation: to our daughter's progress, to the educational prospects of so many children with educational challenges like hers, to the future of so many beloved young ones.

Federal funding for the IDEA has fallen short of its promise ever since the program's inception. Our schools are already patching services together out of insufficient resources; in Wisconsin, the public school system is reeling from a massive two year budget cut in the last cycle.

We fear that this will be the blow that shatters special education beyond repair, and truly handicaps our daughter's future.

Please, Mr. President, please do everything in your power to halt these cruel, senseless sequestration cuts!

Sincerely,
JoyMama

Presume Competence

Just a little comment / report in an early-morning meeting with Joy's teachers.

At issue was Joy's progress interacting with online books.  At the start of the year, she had just ONE online book that she wanted to go to over and over.

Then she broadened her range, then it exploded to a whole series of books that she was interested in doing.

Just lately, she seems to have lost interest again.

We've done plenty of agonizing in the past about the switches and sliders on Joy's mixer board, the gains and regressions, and how that interacts with the IEP process.  Shoot, that's what the name of this blog is all about!  Elvis Sightings, those moments and achievements that come and go.

So how do you process and deal with things that disappear?  Do you assume they're gone and that you have to teach them again?  Or even back up and go to something more fundamental for a while, in hopes that you'll eventually get there again?

Or do you do the wonderful thing that Joy's teachers did, and propose the following assumption and approach:

She's getting bored with this.  

We'll find something different and challenging to try next.

Just a little comment / report in an early morning meeting with Joy's teachers -- yet also the kind of moment where the heavens open and the angels sing "Alleluia!"

Second Time on Ice Skates

See that kid on the right?

That's Joy.

Second time on ice skates.  Ever.

Click and Pull

On the day of the Winter Solstice, when it became clear that the world was not in fact coming to an end as the Mayan calendar turned over, our little family was holed up at home, with school cancelled due to snow.

I wrote the following note to Joy's school-and-therapy team that day: 

Since we're at home with the snow-day -- and the world has not, in fact, come to an end -- I'll write with a joyous update. 

[Joy] has known how to click with the mouse for her computer games for quite a while.  I've been able to leave her in the playroom with the one computer while I'm on the other side of the wall with the (better!) computer, and she'd come get me when she wanted to show me where to point the mouse when just clicking wasn't enough. 

But today when I left her alone with her Kneebouncers.com subscription, she was able to point-and-click navigate all on her own.  She's been gleefully choosing one game after another, without any help from me at all.

I know she's been doing mouse-work at school, but hadn't quite realized how gloriously independent she'd become!  This is the first time she's busted out those new point-and-click skills at home.  Can drag-and-drop be far behind?! 

Thank you all, happy snow day, and the merriest of holidays to you and yours!

There has been much merry pointing-and-clicking since then, lots of computer time at home during a long and relatively-laid-back holiday.

And here we are two weeks later, and guess what wasn't far behind?

Not only do we have drag and drop -- but on this activity of matching the lower and upper-case letters, she is doing most of them ON HER OWN.  Only in the cases where she asked for help did I provide hand-over-hand.

Oh, and that's not all.

Yesterday she used her iPad to post two blank comments to a Facebook thread on my wall -- in my name.

Today she sent a blank e-mail from her iPad to eight of my advocacy colleagues, and drafted another one to a friend from church.

I am ridiculously proud.

I am also in a whole lotta trouble unless I figure out how to lock that iPad down better!

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!

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.

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!

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...

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:

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

And there goes Joy, ready to revel!

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

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!

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.

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!

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:

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!)

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]:

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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.

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Please vote.