The Sound of "Nigh-Night"

Just recently I shared with you an account of the "Nigh-Night" game, where the interactive people-play Joy-giggles had me fit to be tied.

The game has morphed a little bit, such that the phrase "I love you so much!" causes even more delight than the nigh-night.

Listen to the Joy! (it's an mp3 file, about a minute long)

OK, that's about it for me this evening. Nigh-night!

Together!

An injury to one is an injury to all.
-- labor-union motto

Joy's been developing new favorite / happiest / funniest-words-in-the-world. (Remember yawns? And panda / Santa?

This April, just in time for Autism Awareness Month, she's picked on an especially good one.

"Together!"
It actually comes out somewhat like "GEH-guh!" But she wants people around her to say it right. She'll come up to you and say "geh-guh" to request that you say "together" for her. Her school staff put this together (heh!) with the song:

The more we get together, together, together,
The more we get together,
The happier we'll be!

Four "geh-guhs" for the price of one, what a deal!

"Together" is a powerful core for Autism Awareness Month. Awareness leads to action, and action gains power when people work together.

I've been running around like crazy these past weeks, trying to get set up to take advantage of Autism Awareness Month opportunities for letting people know about the autism-related issues in Wisconsin around the state budget legislation (Medicaid! and Education!) and threats to the autism insurance mandate.

One result of that scrambling has been a new advocacy page on the website of the Autism Society of Greater Madison. There's been a press release. There's been a legislator letter. There's been a budget handout. There's been the organizing for a presentation on autism and the Wisconsin budget (at which it looks like I might even be doing a little bit of presenting, though I'm not the main attraction by any means.) I've been meeting lots of people, doing lots of autism-related networking.

But it's a bigger "together" than that. With all the new legislation-based threats to people with autism in Wisconsin, not a single one of those threats is specific to autism. In fact, the word "autism" is not even mentioned in either the budget or the health insurance mandate-busting bills.

What a stunning opportunity to join coalitions and make common cause with other disability groups and other issue groups!

The coalition groups have really been out in front with legislative positions and actions. Remember the Medicaid-related press conference back on February 20? A coalition effort. There's a coalition that's working on the mandate-busting issue -- based on a coalition that originally formed in support of mental-health parity a few years back. There there are longer-term established cross-disability organizations and coalitions that throw events like the Disability Advocacy Day that just happened in Madison on April 6, and put out materials like this impressive suite on the budget.

It is good to be tapping in to all these levels of group action. There's something of a progression that could almost be charted like this:

autism ==} developmental disabilities ==} special healthcare needs ==} health care

or

autism education ==} special education ==} education

When you get to the bigger coalitions staffed with professionals, there's a whole new level of access and clout. I'm really looking forward to seeing what connections I can help foster, and what my special-interest (autism) group can both gain from, and contribute to, larger group efforts.

Together.

Today I'm headed out for more networking at the Autism Society of Wisconsin annual conference. Tomorrow our whole family is participating in a local Autism Awareness Month fundraiser, "One Walk, Big Strides for Autism" walk.

Lots of "together." Happiest thing in the world, right now!

Yawns Are Funny

Audio performance art, starring Joy & JoyDad!

(Listen especially for the part where she prompts him to do more.)

Yawns Are Funny (.mp3, 31 sec.)

Expect the Unexpected

I'd read a lot of blogging about the phenomenon. About how kids on the spectrum (and some kids not!) put so much effort into keeping their heads above water at school, keeping it all together during the day. Then they get home where they're comfortable and can let their hair down -- and all hell breaks loose.

I read about it again just this week, as my dear bloggy friend Jess described an absolute mess of an inconsolable evening. Her daughter's aide at school later said, "When I saw how hard she was working to manage herself and to redirect her energy when the stress was too much, I knew full well that we were purchasing our morning with your evening."

We'd gotten the warning from our Agency 2 autism-therapy team leader as well, who cautioned us to be very careful about how much therapy we might be planning to load into the evenings of a kiddo who was going to be working very hard all day at school. We ended up deciding to use the start of the school year as a transition point from intensive-level therapy (24 hours per week in Joy's case) to a "post-intensive" level of 8 hours per week.

So how have things been going at home, this first week of full school days, now that Joy's recovered from that fever she had?

First off, I get the most amazing hugs when I pick her up from school in the afternoon. She crawls up into my arms and hangs on me while I hear about the day from her aide. It feels like somewhat like a big sigh of relief, even though she (of course) doesn't verbalize it. Mama. You're here.

Tuesday, the first afternoon home this week, we chanced things with an impromptu playdate at our house, a family that has an older sib for Rose and a younger sib for Joy. Joy and her friend spent the time happily in the playroom, crashing on the pillows & couch, crawling through the play-tunnel. Joy was more interested in bouncing on her exercise ball and looking at herself in the full-length mirror, while her friend was more interested in filling plates with play-food to serve the mamas, but when they interacted, there were smiles and giggles.

Wednesday we had the first encounter with an evening therapy session after a full day of school. Joy was so happy to see her barista. At the end of the session, the barista commented that Joy really seemed to be taking delight in familiar games with a familiar person. There's that sense of relief again...

Thursday, we went to the park after school with the same friends as on Tuesday, plus one extra. Joy was once again in a good mood, and spent a fair amount of time on the little merry-go-round with all four of the other kids, despite much noisiness from the older ones.

Maybe it's a honeymoon, maybe it's a fluke, maybe it will all fall apart this evening or next week. But so far, this week's expectation-shattering has been every so much nicer than last week's expectation-shattering.

I oughtta have figured out by now to expect the unexpected!

P.S. The latest funniest-things-in-the-world: the act of yawning, and the word "panda."