Friday, May 29, 2009

WI Autism Insurance - Excellent News!

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings

Insurance coverage for autism in the state of Wisconsin moved a big step closer to becoming a reality last night.

I've been keeping up a running update on the progress of the initiative at my February 19 post, which was when JoyDad did his public hearing testimony.

Recap in a nutshell - this is now the second biennium in which autism insurance in Wisconsin has made it to the stage of serious legislative consideration. In 2007 it was stymied in the Wisconsin Assembly, which then had a Republican majority, at the eleventh hour.

This year, after the 2008 elections which left both the Wisconsin Senate AND Assembly with Democratic majorities (plus a Democrat for a governor as well), the measure was introduced early in the session, as AB15 in the Assembly and SB3 in the Senate.

Both measures were referred to committee, and public hearings were held. The Senate committee recommended the measure back to the Senate unanimously. The Assembly committee should have had the votes to pass it as well, but were held up by one Rep. Bob Ziegelbauer (D), who had some concerns with the language of the bill.

Then the measure was taken out of those committees' purview altogether, and went to the Joint Finance Committee, where the ugly details of the state budget are being hashed out as I type (Wisconsin, like every other state, is being socked by the economic downspiral). The JFC is moving quickly to make the sausage, packing multiple motions into large omnibus packages.

One such package, labeled as Motion 700, passed last night just before 10:30pm. The autism bill is included, on pages 20-22.

This will now be part of the budget bill that goes back to both houses, rather than continuing as the separate measure that was AB15/SB3. With the support of the governor and the majority leadership in both houses the way they stand, it would be very difficult to kill the autism insurance provision now, given the support it enjoys from the leadership in both houses and from Governor Doyle. From reading the live-blogging at the WisPolitics budget blog, it looks like the (failed) minority-party challenges to the motion were all about other things, leaving the autism provision alone.

The optimistic plan is to have a final budget passed by sometime in July mid-June, such that it can be signed by the governor and in force by July 1. Then again, this has been the hope every time around, but the success rate at keeping to the July 1 deadline has been abysmal. I will continue the picky updates, which I imagine are less-than-fascinating to many of my readers, simply because my Google search records indicate that people are coming to Elvis Sightings to find information on autism insurance in Wisconsin, and I think it's important to be able to trace the progress SOMEWHERE in exhaustive detail.

Big thumbs up this morning. I think it's gonna happen.

Links to prior related posts:
3/15/2009: WI Assembly Hearing on 2009 Autism Insurance Bill AB15
2/7/2009: More About Wisconsin Autism Insurance Legislation
1/11/2009: 2009 WI Senate Bill 3

Wednesday, May 27, 2009

Five Years of Joy

Happy Birthday, Sweet Joy!

Happy Birthday, Sweet Joy!

May you always see the world through eyes of wide wonder.

We love you.

Tuesday, May 26, 2009

Random Tuesday Thoughts

JoyDad takes the wheel for a spin through a special Memorial Day Weekend edition of Random Tuesday Thoughts...

  • We are blessed that Joy is a good traveler. I know some kids on the spectrum take exception to having their routines mangled by vacations and such, but Joy just seems to take it as it comes. She doesn't seem to mind the long car rides, strange places and stranger people (but hey, they are the only family I have...)

  • A favorite activity for Joy this weekend was bubbles. Joy even tried popping them with her nose, which was too cute for words. And it is great to see her able to track individual bubbles with her eyes, and have repeated success in popping the bubble she is following.

  • Another favorite activity for Joy was getting any available adult (and sometimes Rose) to help her to jump. And there were seven adults for her to choose from, so the opportunities were plentiful... She doesn't have a word for "jump," but she lets you know in no uncertain terms by coming up in front of you and grabbing both of your hands. She makes wonderful eye contact as she sails through the air, with a great big grin and squeals of delight.

  • When she wasn't chasing bubbles or requesting the jump game, Joy also liked to play what we call the clap game. She'll put her hands on yours and make them clap. She does that a time or two, and then makes them miss with the other person saying a great, big "UH OH!"

  • Rose loves going to the cabin. She didn't seemed fazed by the bugs, and spent a lot of time outside on the past-its-prime swingset and down by the pier. She is looking forward to telling her friends about it at school tomorrow. We printed out some pictures of key events (the restaurant meal in town the morning we arrived, the bald eagles nesting in a tree, the ride on her uncles' boat).

  • The fish weren't biting but the bugs were. We took to describing the swarms of bugs as "biblical" in their epicness. And they must not have gotten the memo about how deet was supposed to repel them.

  • Changing a tire on a large vehicle on soft sand is sub-optimal. The jack doesn't do a good job of staying put. But if you are going to drop said large vehicle onto its brake rotor, soft sand does less damage than pavement would. Don't ask us how we know...

  • Have you ever tried changing a tire with about a gajillion gnats trying to suck every last drop of fluid from your body? Or chopping up a tree that has fallen on your garage while choking on a lungful of gnats? Let me tell you, you haven't lived until you've tried that. Bet you're jealous.

  • Now that I think about it, I'd take using the outhouse when it's 20 below zero over the gnats any day, thankyouverymuch. Oh yes, I have used the outhouse at the cabin in the middle of the winter, with the outside temperature hovering around 20 below. Good times....

  • Even with the bugs and lack of indoor plumbing, I'd still rather be there than here.

  • JoyMama even managed to squeeze in a run on Sunday. She was smart and went early in the morning while there was still frost keeping the gnats at bay. Uncle Marathon and UncleDO wimped out. Although Uncle Marathon does get props for going swimming in the very cold lake.

  • Hot and cold running water are not essential for humans to live. And it's nice to be reminded of what a luxury they are (especially the hot running water) by going without for a few days. I have partaken of the soap and hot running water since our return to civilization, so y'all can take the clothespins off your noses.

  • Our cabin and lake in da U.P. are about the only things that have remained constant in my life. The lake still looks the same as it did when I was a wee lad, the cabin looks and smells just like it did way back then. I'm glad that JoyMama and the girls like to go up there, it holds a lot of memories for me, and hopefully there's a lot more left to be made...

Thursday, May 21, 2009

Gone Fishin'

I'm about to disappear again for a few days. This time, I thought I'd warn you!

It's time once more for the annual Memorial Day trek to the rustic family lake-front cabins in Michigan's Upper Peninsula. We'll open the cabins for the season, put in the pier, eat bacon & eggs for breakfast, put in the pontoon boat, go fishing (more than likely unsuccessfully), walk in the woods, identify spring wildflowers, and spend relaxed quality time with JoyDad family. Can hardly wait!

Oh, and I might go on a training run or two. Just LOOK at my fundraising page for the Komen Race for the Cure, y'all! [Update: link removed.] I'm currently in third place as fundraiser among timed runners for this event... one more donation and I'd bump up into second place... which is the only chance I have of placing in the race with my poky running pace!! What awesome friends and family I have. By the way, the fundraising grand-total for the event is headed toward $200,000!

Here are some previous lake-visit posts. Look for another one on Tuesday or Wednesday.

Bye now!

Wednesday, May 20, 2009


Rose and I went to a neat event at her elementary school last night, a Fun Walk/Run for the kids that was also a PTA fundraiser. There were T-shirts, and race numbers, and goofy warm-ups with one of the first-grade teachers, and picnicking on the lawn, and desserts to share, and the district superintendant & others were handing out little stretchy-bracelets to the kids for every lap completed. The weather was perfect, the turnout was huge.

And, I got to spend time talking with other parents I hadn't seen in a while! Two families in particular were once part of our regular routine but not so much lately -- one family for regular playdates, another we used to encounter last summer at Joy's swimming class. Both those evening time-slots have now been filled with intensive autism therapy for Joy. In fact, Joy was therapy-ing at home instead of Fun-Running and picnicking with me & Rose.

It's a trade-off. Intensive therapy fills a lot of time that we used to have available for other things.

On the other hand, if I'd had Joy at the Fun Run, I wouldn't have been available to catch up with the other parents, because I'd have been Joy-minding...

I also put together in my mind something that I'd not been tracking with, for both these families. They both have older kids in Rose's grade, and both also have younger daughters a little younger than Joy.

Both those younger daughters will be starting kindergarten at the same time as Joy, since we're holding off on kindergarten for another year!

I think I need to make better efforts to keep Joy well-acquainted with these two classmates-to-be. And also to make sure we bring Joy to next year's Fun Run. Wonder how many laps she'll be willing to do, if I go with her?

Monday, May 18, 2009

Three Unexpected Hugs

Sorry I've been a little scarce for a few days. Had two presentations in rapid succession, first a short reflection for Sunday night's worship service, and then a public-comment presentation for the Wisconsin Autism Council (related to my Updates & Downdates post back in March.)

Both went well. In fact, the Autism Council meeting was the site of the first unexpected hug today.

The Autism Council is an advisory body, appointed by the governor, meant to provide guidance to the Department of Health Services on statewide supports and services for children with autism, particularly the Medicaid waiver program through which the state is providing intensive services for Joy. They meet quarterly, and the first half-hour of each meeting is reserved for public comment from anybody who wants to show up and speak up.

There was one other mama who had signed up to speak before me, who had a concern about children being bumped out of the program for supposedly making too much progress, even when the needs were still substantial. We chatted a little before the meeting and established some common ground, but I was still startled in a good way when she had finished her comment and I was going up to give mine, and she caught me in a warm hug and wished me well.

Whether it was the hug that did it or not, I felt that my remarks about providing intensive autism services in natural settings other than the home were well-received by the Council. There was a department administrator (not a Council member) who responded at length, downplaying my concerns to some extent, but I spoke back up again and I think at least made myself heard. I got to have some additional conversation with one of the Council members out in the hall so as not to disturb the meeting. Made me feel like a player, at least! We'll see what's next.

Then toward the end of the day, I got another hug. This one was when we went to pick up our new Honda Fit that I mentioned randomly a couple of weeks ago. Such a cute, bright-red creature it is! We worked with the same saleslady who sold us a CR-V eight years ago, an enthusiastic and down-to-earth person who loves her job and does it well. A new car purchase is a celebrative occasion at this dealership, complete with a big red bow on the top of the car and an official photograph of the happy owners with their new purchase. Unfortunately I had to scoot back home with Rose before we'd had the full grand-tour of the new purchase, to relieve our neighbor who was sitting in on a Joy therapy session, but as I was making our goodbyes I got a great big saleslady hug. Thanks and cheers all around!

OK, that's two hugs.

The third hug-event of the day was one that happened while we were out signing the car-papers. When Rose and I arrived home, Joy's barista was eager to share a moment from the therapy session. She and Joy were exchanging hugs and Joy twice said the word "hug," both times with exaggerated "h" and "g" sounds. "I'm pretty skeptical about these things," said the barista, "but if I weren't so skeptical, that sure did sound deliberate!"

Reminds me of the Popeye Sighting from last October. That hug-word is IN there. It surely is.

What a fine day for a hug, or two or three!

Wednesday, May 13, 2009

Special Exposure Wednesday

Perspective at the Park

Please don't kick Mama in the camera

Just look at that swingset smile.

On a "big-kid" swing.


Special Exposure Wednesday

Monday, May 11, 2009

Monday Numbers

Monday Mum-mum-numbers

Hey, Kia! Are you doing Monday Mum-mum-numbers this week?

Well, whether you are or not, I am!
  • 94 - number of miles I've run since I started keeping count in February. Will hit 100 this week!

  • 2 - number of times I've already had to raise my way-too-modest fundraising goal for Susan G. Komen Race for the Cure. You guys rock. Your new challenge - make me do it again!!

  • 1 - number of bell concerts Saturday night.

  • 2 - number of standing ovations (one for the full group, one for an awesome duet played by 2 of our members!)

  • 3 - number of bells I got to ring simultaneously in ONE hand during a certain passage in Bach's Little Fugue

  • 1 - mylar helium fish-balloon I brought home from the concert decorations for the girls.

  • 100 - percent of her time that Joy spent playing with the balloon and its lovely stringy ribbon yesterday until we hid it away.

  • 7 - handwritten coupons received from Rose yesterday for Mothers Day

  • 2 - coupons I have already redeemed (hugs and a big ol' room-cleaning - yes, this mama is hard-core! I helped her with the room though.)

  • 4 - weeks we technically have to test out the 7-Level-Communicator, a voice-recorded communication device that's a big step up from Joy's push-button.

  • 1 - number of days it took Joy to figure out the new tool. Wow.

  • 5 - number of times Joy went to jump in her bouncy castle with her playdate friend on Tuesday.

  • 0 - level of enthusiasm she'd had for the bouncy castle last year when it was her big birthday present. This is a major improvement!

  • 32 - number of pieces of sports equipment in the kit I got Friday from Special Olympics, for their Young Athletes family program that we'll be doing this summer at home.

  • 3 - number of list-items in this post (at least) that deserve blog-posts of their own.

  • 14 - cups of rhubarb that went into the deep freeze yesterday from our one prolific plant.

  • 5 - names I'm aware of for the flowering bush that we planted yesterday: serviceberry, Juneberry, saskatoon, shadberry, Amelanchier.

  • Gazillion - blossoms on the apple tree in our back yard.

Gazillion Blossoms

Oh, and half a gazillion dandelions in the lawn to go with 'em. At least the yellow is bright and cheery against the green grass!

Update: Ooo, forgot an important one.
  • 8 - number of months since Joy's last knock-down seizure, as of today. Woo hoo! (And, knock on wood!)

Sunday, May 10, 2009

Mother's Day, And A Special 5K

As I type, Rose and JoyDad are upstairs whipping up a breakfast for me that involves bacon and eggs, an unusual treat! I've heard Joy trying out several of her babbly-sounds, and one of them was the long-absent "ma-ma-ma"... now granted, it had rather an air of complaint about it, and was obviously not directed at me because I'm not even in the room. Still, it's in there. And a good day for me to hear it!

Another very cool Mother's Day tribute came from an unexpected source -- my sister-in-law Auntie Running-at-the-Mouth, who picked up a "running mom" meme and added some leisure-studies research findings and turned it into a lovely salute, both to her mother and to me. Thanks so much, RatM!

She mentions that I've got another 5K race coming up... I'd like to tell you about it, if I may.

On May 30, I'm going to be running in the Susan G. Komen Race for the Cure. As you probably know from the amazing pink-ribbon movement, this is a fund-raiser for breast-cancer research. I know all too many people who have had to battle breast cancer themselves, some of them mom-related figures in my life but also friends, other in-laws, a college roommate, way too many. The latest astonishing figure is that the lifetime breast cancer risk is one in eight women.

I'd like to give my readers the chance to help this race count for as much as possible toward funds for breast cancer research and support...

Please consider a visit to my fundraising page for this race and making a donation. [Update: event is over, link removed. Thanks, all!] There's no such thing as "too small" and the page doesn't display who gave how much, only a lovely total. Making every step count for as much as possible!

All good thoughts and prayers happily accepted too. And even though my own mother's journey involved a different form of cancer (renal cell carcinoma), maybe this can be for her too in a way.

In other news, I'm told that I've won a special Mother of the Year award. You have to see this to believe it. (Thanks, Rhemashope!)

P.S. I broke the 10-minute mile barrier on my 5K run yesterday, first time ever. Hoping to do even better at the Race for the Cure!

Saturday, May 9, 2009

What About Me?

Per usual, my reading list has been heavy on the fiction lately, and all from the library. I don't hear the siren-song of autism-book addiction quite the way some of my blog-friends do! Every once in a while, though, I do get seduced into picking up an autism-related book. And then I learn interesting things. And then I have to do a book report, 'cause I report out on everything else autism-related around here...

Anyway. The recent read was What About Me? Growing Up with a Developmentally Disabled Sibling, by Bryna Siegel and Stuart Silverstein. Siegel is a developmental psychologist (and imaginary BFF of Mama Mara) who has written a number of books on autism; Silverstein is a pediatrician and the older brother of a sibling with autism. So even though it's not directly billed as being about sibs with autism, that seems to be the jumping-off point.

So I found myself first gulping and eventually chuckling my way through the second chapter, about the research on sibs of developmentally disabled kids. I had no idea that we (and Rose) were so much behind the 8-ball. Consider:

  • Research suggests that having a handicapped sibling is consistently more difficult for older sisters (p.28)
  • Overall, girls tend to be more often negatively affected than boys (p.29)
  • Adjustment can be more difficult for same-sex sibs (p.30)
  • Sibs closer in age to the disabled sib tend to experience more distress (p.30)
  • It helps to have a larger family - more sibs to share the experience/load (p.31)

Add to that the research that families who planned their children carefully (me, plan? ME?) tend to feel a greater sense of unfairness when a child turns up with a disability, and that younger couples are often better able to cope than older couples (40-cough isn't OLD, is it?), and that authoritarian parents tend to have an easier time providing the sense of structure that a disabled child (especially with autism) may need... Well, we're just a mess waiting to happen, I guess. At least we're not single-parenting ("Without doubt, the most difficult situation to cope with is parenting a disabled child as a single parent") -- my hat is off to my blogfriends who ARE.

Except that, I actually think we're doing OK. So far anyway.

Rose seems like an exceptionally healthy kiddo.

I did pick up some interesting things to watch out for. The fundamental question, I think, is whether we're [un-necessarily] requiring things of Rose that we wouldn't require if Joy didn't have autism. We'll need to be careful about asking her to do too much Joy-care; right now it sometimes takes the form of "watch your sister for a minute while I go put the laundry in, OK?" Definitely something to keep to a minimum.

The other one I catch myself on is a little more insidious. It has to do with the fact that Joy is likely to do damage to Rose's stuff that gets left unattended in the open. So if Rose leaves a bunch of markers and her artwork all over the kitchen table and walks away, Joy is likely to grab the markers and crumple the paper. Should Rose have put the project away? Well, yeah. But most kids don't get such intense natural consequences for that kind of omission. We need to be sure we're sympathizing appropriately for all the wreckage, rather than solely reinforcing the lesson of, "Well, that's what happens when you leave your stuff where Joy can get it."

I also liked some of the general strategies that the book offered: Things like using humor to reframe sticky situations with Joy, giving Rose alone-time with parents, and being sure to give Rose her fair share of praise for accomplishments (seeing as how Joy gets such lavish praise for little things like putting on her own bib or saying even a single word).

The book also made an interesting comparison with the adult-children-of-alcoholics situation. The comparison has kind of an uncomfortable feeling about it, and as the authors point out, Twelve-Stepping obviously does not apply! but I did find myself nodding at a couple of the points. Both neurotypical sibs and COAs find themselves in situations of high responsibility, having to give up the right to be childlike at an early age, placing their own needs second, being unwilling to bring friends home to play, keeping a lot of bad feelings inside... very interesting.

Next up: Horizon (The Sharing Knife, Book 4) by Lois McMaster Bujold. Back to the fiction for me, friends!

Wednesday, May 6, 2009

Photo Wednesday: Buzzcut Drawback

Here's the one big reason that Joy's buzzcut is probably not a long-term "look" for her:

Nevus Removal Scar, 3 years out
It's the scar from her nevus-removal. When her hair is longer, the scar hides nicely. With the buzz, it's as exposed as can be.

Rather a bummer, really. The short cut is so cute on her, otherwise! And SO easy to care for.

So as not to end the post on a down note, here's a reason to be cheerful: the tulips in our front flowerbed.


Tuesday, May 5, 2009

Random Tuesday Thoughts

A belated May-basket to Keely at The UnMom for running this Random Tuesday Thoughts operation, and giving me a reason for randomness!

  • Joy wants "more". She's been signing it for food, bubble machine, swinging, all sorts of goodies and activities. Way to go, girl!

  • Rose wants more too. More time playing with Mama.

  • Mama wants more too. More independence on the part of Rose, especially during handbell concert season.

  • Sunday's concert went awesomely well. I love it when we finish a piece and the audience gives a little gasp/sigh after the last note and before the applause...

  • We debuted new royal-blue floor-length dresses for the show, most with plunging necklines, and managed not to have a single "wardrobe malfunction"!

  • When Joy has a "wardrobe malfunction" it usually has to do with a leaky diaper.

  • Why is it that Joy always seems to wake up in the wee small hours on Tuesday mornings, one of her busiest days of the week?

  • I was up early today too, but it was intentional. Got a nice pre-dawn run in. Lots of birds and blossoms and bunnies out there.

  • The strawberry patch is starting to bloom, now that JoyDad has fenced the bunnies out. Can't wait till the garden we planted this weekend starts to sprout as well!

  • Did you know that violets are edible? Tastes kind of lettuce-like and makes a lovely unusual contrast to a salad of greens. Rose has loved picking flowers for dinner. Joy eats them on her plate, but hasn't figured out to pick them out of the yard to eat. Which is just as well, I suppose.

  • Happy Cinco de Mayo!

Monday, May 4, 2009

Patterns at the Park

I had a fine evening at the park with Joy and Rose the other day. It had been a couple of weeks since the elements converged such that we could all go -- weather and absence of prior commitments on all sides. It was a different experience than the last trip!

Difference #1 - Rose rode her bike. Like, on the way there! When we went to the park to learn to ride, we loaded up the bike into the car and drove to the park. Now she can ride almost the whole way, and only has to walk her bike on one especially steep hill.

Difference #2 - Joy didn't dash. Last time we went, she wandered afield, and I had a big long run at one point, ending with a dramatic swoop whereby I caught her by the coat just as she was about to jump into the water in the ditch! This time, she spent the entire time in the gravel area.

Difference #3 - The gravel area didn't enter Joy's mouth. Last time, particularly near the end of our stay, I felt like I was digging gravel out of her mouth every time I turned around. This time? Not at all.

She did spend lots of time gravel-stimming, which felt very familiar. One new thing was shuffling her feet through the gravel on her way to the swings or play structure. I'm reminded of how last year she started the spring season being extremely stimmy at the park, not wanting to do anything else. Then over the course of the park season, she got gradually more interested in things other than the stimmies. Wondering if we're already seeing that pattern repeat.

Difference #4 - Joy wanted to play on both the big kid swings and the toddler swing. Last time she only wanted the toddler swing, though I tried to interest her in the big-kid swing, the kind with the flexible seat between two chains. She was having none of it, deliberately sliding off even before I could get her swinging. This time she gravitated toward the big-kid swing herself, got into position to hike herself up to sit on it, and then looked at me for help and signed "more" when she didn't quite make it! She went back to the swings several times, sometimes requesting "more" for my help, sometimes draping herself over the swing on her tummy and propelling herself. She even at one point tried to do the tummy-drape thing on the toddler swing, which didn't work quite so well. I liked seeing the experimenting, though. And the signing -- how glorious to see the signing.

Well, Rose would probably tell me (since they worked hard on defining patterns in kindergarten) that you can't call it a pattern until/unless it starts repeating. We shall see. Whatever else it was, though, it was a lovely evening at the park.