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!