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!