Sunday, April 1, 2012

1 in 88, 1 in 252, 1 in a million

The new autism-prevalence estimate numbers are out from the Centers for Disease Control.

One in 88 is the new number. One in 54 among boys, one in 252 among girls.

For Joy, I'm also always aware that the autism diagnosis is on top of her linear nevus sebaceous syndrome, for which numbers are not collected and estimates are rough and wacky. My guess is that the combination makes her, yes, one in a million. At least.

Nobody really knows what the numbers mean (though opinions abound) -- how much of this increase heralds a new and dramatic change for who we are as human beings collectively, and how much involves increased recognition of who we've always been. And here we sit at the close of Developmental Disability Awareness Month (March) and the opening of Autism Awareness Month (April) and I find myself wondering together with Commissioner Sharon Lewis of the Administration on Developmental Disabilities:
At what point do we move from seeking simple awareness about intellectual and developmental disabilities to expecting meaningful respect for people with ID/DD?

Here is our beautiful one-in-a-million Joy:

The artwork above is courtesy of a drawing program on Joy's new iPad, whereby we can easily take photos and trace them via the touch screen. No, she didn't do this herself! Joy actually doesn't like the drawing program any more than she likes to draw on paper. But I think I'm going to need an entire post or more for the iPad, and this one isn't it. The rest of this one is actually about an outing last weekend to the local arboretum, on a one-in-a-million spring morning that came five or six weeks early for how Wisconsin usually operates. (Does this herald a new and dramatic change?)

The cherry blossoms were out in full magnificence:

Joy got to smell the blossoms with a bit of help from her sister:

You can see that we're going to be sun-screening the scalp again this summer. Yes, I did have to reprise the almost-buzz-cut routine again due to stimmy hair-pulling. On the bright side, now that we're on our third go-around with this, it's gotten a whole lot easier than the first time we experienced this.

But speaking of delightfully-stimmy things -- I think that Joy's favorite part of the trip was a bush whose excellent qualities could be experienced in any season:

I think there will be more arboretum trips in our future this summer. It's good cheap entertainment, seeing as how we weren't winners of $640 million... (Yes, JoyDad did go and drop $5 for the thrill of it all. Rose was fascinated -- she'd never seen a lottery ticket before!)

Keep calm, and carry on...


Quiet One said...

Beautiful girls, beautiful pictures, beautiful story - one in a million for sure!

Lynda said...

BOTH your girls are one in a million!
And honestly, their parents are two in a million.
Miss you guys

Barbara said...

Full.magnificance. Your family.

Looking forward to reading about your iPad2!

Liz Ditz said...

Joy's hairdo is the same as my neurotypical 23 yo daughter's... like this. She cut it super-short two years ago "just because" and really likes the ease of upkeep.

thanks for sharing your family with us.

Anonymous said...

Thank you for the beautiful story. Made me miss you guys even more! And missing the arboretum!! (Headed back to the area early May). See you guys real soon! xoxo

JoyMama said...

Dana, Lynda - missing you too!

Liz - longer hair seems to be "in" both at the elementary school and at college/grad-school age too... but bucking the trend can have its own rewards! :-)

Nancy O' said...

The Arboreutum is one of my son(21YO w/autism,CP and other dx)favorite places. He especially loves to be there in the fall with the huge piles of fallen leaves.

JoyMama said...

Nancy O -- One of these days our paths will surely cross, though maybe not at the arboretum! Our family only just discovering the arboretum, actually, but I think we'll be there a lot this year.