Thursday, July 30, 2009

A Wedding Reception Story

One of Joy's baristas had a fun story to tell today. She'd recently been on vacation for a family wedding, with her large extended family.

It sounds like the reception dance was a joyful affair. One of the highlights of the evening, after the guests had gotten a little loosened up and let their hair down, was the song Baby Got Back, a raunchy ditty with a strong dance beat. The lyrics reflect masculine appreciation of a generously-proportioned female backside. (Yes indeedy, objectification of women. Tsk, tsk. Though occasionally it's fun to boogie down to a song that objectifies MY particular variety of shape... but I digress.)

Anyway, everyone was out shaking it on the dance floor. The star of the show was a young man of about the age of ten, who was mingling and cutting up and showing off and having a blast of a time. His enthusiasm contributed greatly to the general merriment!

In a later conversation with the bride, the barista found out that the dance-floor star was a cousin from the other side of the bride's family. The bride was simply delighted to see her autistic cousin out there having such great fun with the relatives...

I like happy family-reunion stories.


My next post will be Post Number 200. I believe I'll reflect back and select a top ten list of my posts so far. If you have a favorite to nominate, let me know!

Tuesday, July 28, 2009

Confessions of an Ugly Stepsister

One additional delight that came of my visit to AuntLO and UncleDO earlier this month was that they were culling their book collection, and invited me to carry off any of the discards that I wanted. Among the novels I took from the pile was Confessions of an Ugly Stepsister, by Gregory Maguire. I had read his Wicked and felt rather take-it-or-leave-it (I haven't seen the musical, how culturally out-of-touch I am sometimes!), but was willing to give him another chance.

Confessions of an Ugly Stepsister was ever-so-much-more compelling!

First off, I was a sucker for Tracy Chevalier's Girl With a Pearl Earring when I read it a couple years ago, set in the city and household of the painter Vermeer in 17th-century Holland. Confessions places its retelling of the Cinderella story in that milieu and time-frame (well, not Vermeer's house, but definitely the Holland of Vermeer and Rembrandt), such that the household details felt familiar. So too did the exploration of women as artistic subjects, and as apprentice artists themselves.

Maguire goes in deep on the themes of ugliness and beauty and art; on perception and reality and the places where perception fails. His retelling of the Cinderella story is full of surprises and yet makes perfect sense as to how HIS version might have been twisted into the fairy tale we know today (as if he weren't the one doing the twisting!)

So why does this rate an Elvis Sighting?

Well, it's the older (ugly) stepsister Ruth. Most of the book is told from the perspective of the younger (ugly) stepsister Iris, who is clever and thoughtful but pinched and plain in physical appearance. The older stepsister, when first described, is "a solid thing, already more than adult size, but simple. A pendulum of spit swings out and makes a tassel. Iris reaches and wipes Ruth's mouth."

Ruth doesn't talk. Ruth perseverates on a little toy given her by the ethereally-lovely girl who will one day be her (beautiful) stepsister. "Is she a changeling?" the exquisite Clara/Cinderella asks.

The word "autism" would have been a complete anachronism to 17th-century Holland, and Maguire doesn't make any such diagnosis. But I heard spectrum echoes. (Is that perception on my part, or a place where perception fails?)

Ruth is essential to the plot.

And I must confess...

that I can't say any more, because I simply cannot spoiler this book. GAH!

Saturday, July 25, 2009

Christmas in July

I recently read a very cool article in the latest issue of the Autism Advocate from the Autism Society of America: Santa-America and Autism Society Launch Affiliation.

Santa-America is a volunteer organization with a special mission:

Over 100 Santas from 44 states and six foreign countries visit children and families in crisis. Santa Claus visits when a child or family needs him—12 months a year—bringing love, hope and joy to special-needs children in a loving one-hour visit at home, hospital or hospice. Santa's visits are free; there is no charge for a visit from Santa Claus—ever.

The new partnership with the ASA started out with an event in Kansas City this past Christmas:

The settings were scheduled with 3-5 families during a 30-minute period. Children waiting to see Santa were able to watch a Christmas video or play in the play area of the club house. When it was their turn, each family was taken into a private room next to a cozy fireplace to meet and talk with Santa. Santa’s “book of good boys and girls” included a page for each child, listing their birthdays, friends, teachers and what they had said they wanted for Christmas. Most important, families knew that everyone there would be accepting of any behavioral differences their children might have.

Well, that just 'bout brings tears to my eyes! What a spectacular accommodation for families who want to share the magic of Santa with their spectrum kiddos, highly personalized and without the mall meltdown triggers.

Ernest Berger, president of Santa-America, summed it up neatly:

All our love is focused on giving our children an inclusive and joyful experience.

That sounds... like some amazing bloggy parents I know.

Friday, July 24, 2009


If I tell you a story, will you tell me a story?

I've been nudged to think still more about the contents of my Library Conference post from a few days ago, after getting comments both from the moderator of the "Serving Students Along the Autism Spectrum" conference session, and from the creators of the "Libraries and Autism: We're Connected" training program and materials. An exchange of e-mails has followed, and some of my feedback has been incorporated into the Libraries and Autism web site -- plus Elvis Sightings seems to have become an Autism Blog of Interest, woohoo!

Anyway, this all led me to reflect on my own experience with Joy and the local public library. I'm hoping to hear some autism-related library stories from my readers too.

Joy is not an easy match with the public library. When Rose was little, I could take her to play with the books and toys, and she'd spend hours coloring or building with their huge toy blocks or perusing books with me. Joy doesn't work that way. She'd throw (or eat) the crayons, use the aisles as a racetrack, have little-to-no interest in the books I'd present.

In fact, it's even more challenging with books lately. Joy has always been hard on her board book collection, but the newest wrinkle is: she's decided that the best use for a board book is to fold it backwards, presumably for the sensory delight in breaking its spine. More and more of her books have ended up as tattered individual cardboard pages.

I don't check out library books for Joy to mangle.

Our most successful public-library experiences have come courtesy of a friend of ours who also happens to be the children's librarian at a nearby branch. Together with Joy's former daycare bud and his mom, we'd sign up for toddler story-times led by this librarian, for half-hour sessions full of songs, fingerplay, books and toys. I would have to do a lot of corralling Joy, and occasionally she'd be too intent on leaving to make it worth staying. The big bonus, though, was having the toddler-time led by someone who knew her and valued her, someone she was comfortable with, who didn't get bent out of shape when Joy was noisy or not particularly attentive or masticating her nametag or whatever.

Joy's full schedule of intensive autism therapy has pretty much ruled out any story-time attendance lately. I do take her to the library but it's mostly for my own errands, to check out books that I've placed on hold and to return others. She does enjoy helping me put each book into the return slot and pushing it until it falls, but I pretty much have to keep a tight hold on her hand the entire time we're there.

What public library memories do you have to share? (I said autism-related above, but if you have a non-spectrum story to share, sure, why not.) What works well at your public library in that regard? What doesn't? What would you change about it if you had your druthers? Tell me your story!

Wednesday, July 22, 2009

Product Hits and Misses: "Squeeze That Nickel" Edition

Squeeze that nickel till the buffalo hollers, dear readers! (OK, I guess that would have been the LAST depression when buffalo nickels were around. And they weren't even buffalo, they were bison. But still.)

Yes, today I've got several money-saving goodies to review. First up is a little trick I've been using for homemade diaper wipes. A friend of mine passed this tip along to me in a greeting card when Rose was born, and I've been using it ever since. (I trust that one of these years I'll be able to give it up. But that time does not appear to be close.)

So, how do you do homemade diaper wipes? Here's the recipe:

1/2 roll good-quality paper towels (I use Bounty)
2 c. water
1 T. mineral oil
1 T. baby shampoo

To get a half-roll of paper towels, you'll have to cut the roll with a serrated knife, as if you were sawing a log. I usually trim off any raggedy bits with scissors.

For a storage container, I use a one-gallon plastic lettuce tub:

Lettuce tub for diaper wipes
I just bought a new one recently. The first two lasted me through seven and a half years... ohhhh I've been doing this for tooooo long....

Anyway. Mix up the water, oil and shampoo, and then plop the half-roll in, cut side up. Give it a few seconds to soak up a bunch of liquid, then take out the half-roll and flip it upside down so the smooth side is up.

Homemade wipes, top view #1

Put on the lid (you may need to squish the roll down just a bit first, but that's OK). And there you have it. I was initially told to pull out the center core and pull the wipes from the middle, but for me it works best to take them from the outside. After the roll gets a little smaller, you can turn the roll on its side within the tub to make the wipes even easier to grab:

Homemade wipes, top view #2


OK, next item is in honor of the late, loud pitch-man Billy Mays:

Tub of OxiClean
How does this fit the "Squeeze That Nickel" theme? I'll tell you how. This stuff WORKS to take out stains. And if you can take stains out, you can put the clothes back in the drawer to wear again. And you don't have to buy new ones. And you save a TON.

Joy's clothes always seem to pick up more stains than anyone elses in this house, most often food-related. She eats enthusiastically and well, preferring to use her fingers. She does use fork or spoon when encouraged to do so, but does not always keep her mind on the task... She also tends to stuff her mouth a little too full, resulting in interesting driblets and droplets.

Yesterday I used OxiClean to get out mulberry stains from a white onesie, and dried-on red wine stains from the back of her dress. (Huh? Oh, yeah. No, there was no wine in her sippy. That wouldn't have spilled, right? Actually I was silly enough to go chasing across the yard after her with a glass of wine in my hand. Clumsy mommy!) Anyway, the stains totally vanished.

These last couple of days I've been seeing post-Billy-Mays OxiClean ads. And, as much as I was annoyed by his outsized voice and his impossibly-dyed-black hair and beard... the more moderated female voice that does these new ads does not make ANY kind of impression. I can't believe I actually kinda miss the guy.


OK, one more product.


The lowly pinwheel may set you back all of a buck at the dollar store. But oh, the joy we get out of these things!

We can't leave pinwheels lying around for Joy to play with at random, because she doesn't take too long to crumple the wheel and bend the stick beyond all use. However, they're great when one of Joy's baristas needs to put a guaranteed distraction into her hand for just a minute while they jot something down or program something into the GoTalk. We've also had good success lately with turn-taking games -- Mama will blow on the pinwheel, Joy giggles hysterically, Joy reaches up a hand to spin the wheel herself, Joy giggles hysterically, Joy pushes the pinwheel back toward Mama, Mama blows on the pinwheel, Joy giggles hysterically... You get the picture. How many giggles can you usually buy for a buck, huh?


OK, that's all for today... must go make more applesauce... squeeze those windfall apples till the worms holler, or something like that!

Tuesday, July 21, 2009

Scenes from the County Fair

Nothing says "summer" like the county fair! (Even if the temperature is in the 60s and you have to wear sweatshirts.)

When we told Joy's Saturday-afternoon barista that we were going to the fair that evening, she wondered how we'd do it. Do you use Joy's monkey-backback? she asked? Nope, we just do a whole lot of firm hand-holding.

If I'm remembering right, we've taken Joy to the fair every year of her life. First time out, she was 2 months old and napped through it all in a Baby Bjorn carrier! Then she was in stroller, then on her own feet -- with her hand in a firm, firm grasp.

Joy really did great this year. We decided to make something of a game of trying not to break the bank at this year's fair, which meant that the over-priced creaky midway rides that we can never predict which girl (if either) will enjoy -- were out. Instead we started with a lumberjack show. Except it was lumberJILLs, lean tall powerful women throwing axes and chopping and sawing and log-rolling. And wielding immense chainsaws that were deliberately hugely-loud. Our young sensory-sensitive lass had a rather rough time of it. Yes, that would be our "neurotypical" Rose, who spent most of the show with her fingers in her ears. She objected to the chainsaws, and the loud announcer, and the cheering crowd. But fortunately she stuck with us, and ended up very much enjoying the log-rolling competition, especially when the women did a little kick-splash maneuver to distract their competitor with a spray of water!

Joy, meanwhile, was pretty calm about being corralled for the show. We got off to a less-than-ideal start when I was sitting her on my lap, and then suddenly felt something warm and wet on my jeans. Those darn MA generic diapers! But Joy was wearing pants that didn't show the spot, and I decided to be bad-mama and just let us both air-dry. Later in the show, she became fascinated with the long dyed-red tresses of a generously-proportioned woman sitting in front of us. I was not quick enough to keep her from reaching out and exploring a handful of hair, but fortunately she didn't pull, and the woman was sweet and took it as flattery. In fact, she turned around several times in the following minutes to twinkle and flirt with Joy, who responded with smiles and giggles.

After the show, we headed into an exhibition hall where there was a big bouncy-house obstacle course freebie for the kiddies. Rose tackled it with abandon, rope-climbing and all:

Rose climbs a rope
Joy was less convinced.

Joy enters the tunnel
She was willing to go into the initial tunnel, and Rose helped her get past the first obstacle. But then she declined to go further, and we eventually had to commission Rose to help her back out. I think if it hadn't been for the crush of other kids, and if we could have gone in to coax her along, she'd have conquered it.

Next was a petting-zoo area for baby farm animals:

Pet the baby duckie
We had to help Joy with the petting, and work hard to keep her from chowing on the wood-shavings (ew.) Rose enjoyed the baby animals a lot, though.

Then we all went back outside to shiver over and share a massive four-dollar serving of cookies-n-cream ice cream, and then the traditional big splurge: the pony ride!

Pony Ride
Those poor sad little ponies, circling under their little tent! But the girls were so happy to get their rides, and we didn't have to wait in line at all. In fact, we were the only ones in the circle for our turn, a pleasant chance.

Then it was off to see some of the competition animals, bunnies and cattle. For some reason Joy kept wanting to do a kick-boxing maneuver and get her foot up to the level of the bunny-cages, so we didn't take her down all the aisles that Rose went down! It was a sign that the evening was drawing to a close.

I wonder how next year's fair will be. It's a new adventure every time.

Saturday, July 18, 2009

Library Conference

I'm back again -- didja miss me?

I didn't mean to take quite this long to post, but between last weekend's conferencing, the regular daily plate-spinning, and the bounty of the plantation (have frozen umpteen quarts of green-beans, and canned 10 quarts of applesauce and a double-recipe of cherry jam since last we spoke), my poor blog has gone sliding down the priorities.

However. The library conference needs reporting!

Though the pickings were a little slim for my data-library specialty, I did manage to find relevant vendors in the exhibit hall and useful sessions to attend. I also, wonder of wonders, connected up with EVERY ONE of the people-meetings I'd arranged. It really felt in some ways like another reunion weekend, except instead of college friends, it was high school buddies, a housemate from my post-college years in Mennonite Voluntary Service, a college-library colleague whom I hadn't seen since JoyDad & I made our last cross-country move 11 years ago, a data-librarian colleague from social-science data conferences. (Yes, they have those. Who knew?) And then the wonderful hospitality of UncleDO & AuntLO, who treated me to a grilled-out dinner on their rooftop deck Saturday night, with a spectacular sunset and view of the twinkling city skyline as the darkness fell. Ahhh.

The very last session I attended at the conference was something just for me. It was a session called "Serving Students Along the Autism Spectrum." The program was aimed particularly at school libraries, but it sounded to me as if the attendees represented a broad range of libraries -- and also that some of the more coordinated efforts are happening in the public libraries! Which makes sense, because school libraries are often deemed expendable in budget-cutting times, and we're surely in budget-slashing times these days... many school librarians are just trying to keep their heads above water. But I digress. At any rate, the number of attendees caught the presenters off guard, to the point that they ran out of handout packets!

The session itself had a "what is autism" training component to it, but also had a school librarian describing her own work with students on the spectrum, and representatives from the Chicago Public Library talking about their recent system-wide efforts to orient staff and acquire/create autism-related materials. The CPL is a big system, and I was impressed at how broad their staff-awareness efforts sounded, though at this point it would be hard to guess it from their web site. They also spoke of "inclusion kits" that they're making available for check-out, though it's not yet a completed work -- the kits are social-story materials aimed at particular situations like using the library or using the CTA public transit system.

The school librarian who spoke was interesting. She had a speaking style that was simultaneously animated, with big gestures, but slowly spoken and with huge emphasis on what felt like almost every point, practically every other word. I actually found it annoying to listen to, but then thought "hey, she's showing us what she thinks works when she communicates with young'uns on the spectrum in her library!" Which put a different cast on it. Kind of like how Barney is totally annoying for adults, but little ones lap it up...

A few random good points:
  • On the school library side of things, there was a good point made about keeping the library in mind when it comes to IEPs (filing away for future).
  • On libraries in general, one of the presenters spoke about how libraries can be a natural match for people with autism. It's generally a quiet place; it's generally predictable, with rules for how things go; there are usually safe-feeling nooks and crannies; and there are BOOKS! There are COMPUTERS! You can learn as much as you like about your all-consuming interest!
  • An audience member asked for recommendations for story-time books for kids on the spectrum. The responder gave some examples of books with rhythmic cadences and rhymes, repeated patterns, interesting pictures -- and the audience member pointed out that those are all things that make good read-alouds for any kid. YESSS!

Libraries and Autism: We're ConnectedThe presenters pointed out an award-winning set of resources for libraries, put together by Scotch Plains Public Library and Fanwood Memorial Library, both of New Jersey (where the oft-quoted autism prevalence number is 1 in 94.) The program is called Libraries and Autism: We're Connected, and consists of a 20-minute training video for library staff, a PowerPoint training presentation, recommendations for autism-related materials for library collections, a printed tool with Boardmaker-type icons for library-users with autism to communicate with staff, a social-story tool called This is my Library, links and logos. The panel wanted to rope these people into the conference session, but discovered that they'd be receiving an award at the conference during the same time slot!

I was impressed with the video. (It looks like two parts, but Part 1 is actually the complete presentation, 20 minutes long. Part 2 repeats the last 10 minutes of Part 1 - strange. I figured it out! Part 1 & Part 2 are ten-minute YouTube segments, OR you can click on the video player and play the whole 20-minute video from the library server.) It was very reassuring, low-key, professional. Participants in the video were clearly on the spectrum themselves, not just actors (2 kids, one adult).

Several nice points in the training video:
  • They use the quote "If you've met one person with autism, you've met one person with autism." Nice!
  • They recommend people-first language (person with autism). I know that's got its own level of controversy, but it fit well into the people-first emphasis of the video overall (e.g. The tips in this video are really quite universal... any encounter with ANY library user should involve a receptive smile and personal words of welcome...)
  • One particularly useful conversation tip for de-escalating uncomfortable situations involved asking common social questions to help library users with autism to get on-script and decrease anxiety levels
  • Good point that if there's a caregiver present, that caregiver is not automatically an intermediary -- library staff should communicate as directly with the person as possible
  • Library staff can be ambassadors to the community, by how they respond to situations involving autism! If the staff is low-key and accepting about flapping or vocal stims, for example, it sends an important message to other people nearby that this is not cause for alarm.
  • The video pointed out the people on the spectrum can make excellent library employees and volunteers. (Oh yeah!)

And there was more. As I said, I was quite impressed. I'd be interested to hear reviews from a spectrum perspective, to fill in what I might be missing.

One quibble I have with the materials is some discomfort with the logo. There's that darn puzzle-piece thing again. It's not so bad when the puzzle-pieces are connected to the books in the image -- when the libraries are part of the puzzle of life, and we're all in it together trying to figure out how to do things right, that's positive. But they use the puzzle-piece part of the logo separately too, and the whole implication that people on the spectrum themselves are puzzles to figure out... bleah.

The recommended links on the site also rather bend over backward to be fair-and-balanced about vaccines. On the other hand, the blog recommendations are much more neurodiversity oriented: LeftBrain/RightBrain, Autism Hub, and more.

Well, it's taken me long enough to get this together, I'll just post now. Am hoping to get back to my more regularly scheduled programming once the beans and cherries and apples start to slow down!

Saturday, July 11, 2009


It's been close to a year since I posted about swimming. Last summer, before Joy's number came up on the wait list for the intensive autism therapy she's been getting, we signed her up for lessons at a local swim school, that has a program for kids with special needs whereby if you needed a smaller class size or one-on-one instruction, they'd provide it for the standard non-special-needs price. (Still not cheap, but whatta deal!) Joy did great with the summer session, with a wonderful teacher who really seemed to "get" her. I blogged with glee about the happy report card, on which every skill for the level was marked "Mastered"!

Then we decided to keep going with lessons in the fall. Turned out our wonderful instructor had a summer-only gig, so we were put with another gal who, though well-meaning, did not have that connection with Joy that her predecessor did. Joy had been doing so well with jump-ins. They'd set her up with a staffer behind her to keep her from running, and then the instructor in the water reaching up but not touching her, and Joy would jump in on her own. With the new instructor, though, it almost took a push from behind. Half the session was over before she was willing to jump on her own again.

She made some good progress on floats and submersions. I was chagrined, though, at the report card. Instead of being scored on the next level's report card, she got the same card as the previous session. Only the scores had gone BACKWARD. Instead of reading "mastered" for all the skills as it had in the previous session, suddenly some of the skills were only "developing". When I protested, I was told that after the first session they pretty well promote everyone. But since Joy was still in a class on her own, so could go totally at her own pace without having to worry about keeping up with a class or anything, this time they were scoring it more accurately.

Nice. Not.

We did not sign up for the winter. By then we had a full therapy schedule, plus I had no desire to be dragging in and out of a pool facility having to stuff a wet child into boots and winter coat in zero-degree weather. Plus I was smarting from essentially being told, "we made you feel good the first session with the artifically pumped-up scores, but she didn't really deserve them, so you can stop feeling good now." Bleah.

Anyway, here it is summer again. I tried to take Rose & Joy to the public pool two weeks ago, but we'd scarcely been in the water for 5 minutes before someone pooped in the pool and closed it down. We didn't get another good chance until this past Thursday evening, and the temperature was questionable, only in the high 70s, but Rose really wanted to swim. So we went.

It was a delight.

Joy is so much more confident in the water than she was last time I remember (which may be two years ago, since we didn't do much public-pool last year!) She's taller, stronger, happy to splash around. She doesn't much mind getting a face-full of water, which is actually a bit of an issue because it's a fan-shaped pool where the bottom slopes down from zero at the outskirts to over-her-head in near the center of the fan, and the slope encourages her toward deeper waters. So I had to stay vigilant.

The best part, though, was the jump-ins. I discovered that I could put Joy up on the edge of the fan where the water was a good depth, step back from the wall, count "1-2-3-Jump"... and she would jump in to me with delight! There was only a token barrier behind her, and nobody holding her. We did this over and over, sometimes with Rose at her side but sometimes not (and Rose wasn't holding her at all). Joy only turned to duck under the barrier and run for the grass once, out of twenty or more attempts.

We stayed till her teeth were chattering, maybe a little shorter visit than we'd otherwise have made, but it was a fair trade-off since the cool weather meant that the pool was very sparsely populated and Joy could splash all she wanted without disturbing a soul.

Besides, fewer pool-participants means less chance of bio-accidents...

Sorry, no photos. Maybe if JoyDad accompanies us one of these days, one of us can work the camera while the pool works its magic.

P.S. I'm composing this chez UncleDO and AuntLO -- am in their neck of the woods for a library conference. I like the accommodations! Good coffee, and free unlimited wireless access!

Thursday, July 9, 2009


Joy has been stretching her repertoire of gymnastic routines lately.

The cutest one:

Joy Somersault
She's been very much into somersaults lately. She figured them out herself. At first she was going over on her back with a big kaboom (and putting her hands down was optional, yikes!) but now she's got the trick with the hands and at least a certain degree of tucking and rolling.

Now if only the roll would start in the correct locations! She's got a good one going in the photo, but she's just as likely to start it going in the opposite direction, and slam into that little window ledge as she goes over. Oww.

She's also doing her tricks on the living room furniture. Imagine walking up to a glider rocker, putting your head down and somersaulting INTO the rocker. Such that your back and legs whomp up into the back of the chair, knocking the whole operation over onto the hardwood floor.

Then there's doing the somersault on the couch, or starting on the couch and flipping to the floor....

She's also got the trick of the gymnastic mount onto the dining room table. No need to climb on chairs anymore. She just puts her hands on the table, makes a little jump so she's supported on straight arms, and climbs from there. And then jumps off, in a glorious flying leap.

I suppose we ought to put her in a gymnastics class (maybe she could wear a velvet leotard...) Alas, there's no Special Olympics gymnastic team for her at this point. There's a gymnastics class for special-needs kids at a very cool facility not too far away, but time and dinero are both in pretty short supply at the moment.

A gymnastics class also wouldn't resolve the aspect of Joy's delight in making us react (and we HAVE to react, for safety reasons). Between her seeking of the reaction plus the sensory bang, it all adds up to a lot of scrambling for the parents and the baristas. And she's so fast.

Has anyone else got a furniture gymnast? How do you deal?

Wednesday, July 8, 2009

Happy Blog-o-versary, JoyMama!

Is this thing still on?

I'm raising my diet, carbonated, caffeinated beverage in a toast to JoyMama! One whole year of bloggy goodness down, many more to go. I've enjoyed being along for the ride, hope y'all have too!


Tuesday, July 7, 2009

Will Squeak for Grease

Remember my agonized howls back in March, when Joy got referred for an appointment with the same pediatric opthalmologist at the same clinic where two years ago we'd had the worst clinic experience EVAH?!

We had the appointment this morning.

It went fine.

SO many things were different.

  • Today we had the first appointment of the morning, so no crowded waiting room.

  • This time I explained our situation up front to anyone who would listen.

  • The waiting room itself was tidy and whole, as opposed to the construction that was underway in September 2007.

  • We had a minimal wait before being called the first time (a short enough wait that Joy was entertained by the waiting-room goldfish the whole time.)

  • The doctor came promptly after the tech was done.

  • We knew in advance that Joy's eyes would need dilation so didn't have that element of surprise.

  • We got to wait for the dilation to take effect in a private exam-room with low lights.

  • They came for us in EXACTLY the 30 minutes allotted, rather than the hour-plus we suffered through last round.

  • No seizures. As expected, but it helped so much! (We were so much in seizure-mode last time, it didn't even occur to me to TELL the doctor that it had happened. She was surprised not to find it in her notes when I recounted the experience this time around.)

We were outta there in an hour and a quarter. What a marvellously well-oiled visit!

The point of the visit was a concern on our part that we keep seeing episodes where Joy's eyes don't track well together. It seems worse when she's tired or out of sorts. Fortunately she performed for both the tech and the doc, so they could see what I was talking about! (Joy was, in fact, remarkably cooperative with the whole appointment.)

The diagnosis is strabismus, but not serious at this point. The key seems to be that she can pull her eyes back into focus on her own. Given that state of affairs, the doctor doesn't want to do anything beyond watching and waiting.

It's a brain thing rather than a physical-structure thing -- her eyes themselves look healthy -- and nothing that they have an easy reliable fix for. The next step up would be an eye-patching routine (yeah, she'd love that) and the escalation beyond that would be surgery on the eye muscles (about a 70% success rate, and I neglected to ask exactly what constituted "success").

We're to go back in a year, unless things get outta control and we have to go sooner. But for now, Joy's overcoming it all by herself. So very much this kiddo has to contend with. I'm very proud of her, and will gladly squeak on her behalf whenever necessary!

P.S. Tomorrow is the first blog-o-versary of Elvis Sightings. Hard to believe it's been a whole year since I first asked, "Is this thing on?"

Saturday, July 4, 2009

Three Cheers for the Red, White, & Blue

Except for when it's my rats'm-frats'm LEFT FOOT.

I thought I'd just stubbed my little toe on the corner of a wall yesterday morning. But there's obviously a bit more than just your standard toe-stubbing going on here.

The irony of JoyDad's left foot just now allowing him to run, while my left foot will prevent me from running this weekend, is not lost on me.

Happy rats'm-frats'm 4th of July, all!

Friday, July 3, 2009

Quick JoyDad foot surgery update

Yesterday was one month since I had surgery on my foot. I've made way more progress than I thought possible. It's healing up real good...

In fact, yesterday was also the first time since the surgery that I ran. I took it easy, I didn't try to push it. I spent more time walking than running (alternated three minutes walking and one minute running). And I'm not experiencing the post-run pain like I did before the surgery. So I guess that means it worked.

Thanks to everyone who sent prayers, thoughts and well wishes. It helped to know there was a whole mess of people pulling for me.

And now I shall commence running after our dear little Joy...

Wednesday, July 1, 2009

Forward! (Autism Insurance in Wisconsin)

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

We did it, y'all!

On Monday, Wisconsin's Governor Jim Doyle signed the state budget into law, including a requirement for insurance companies in Wisconsin to cover autism-related treatments. Until now, insurers in this state have been free not to cover autism, and to deny any service that might be autism-related.

Intensive-level therapy for children with autism in Wisconsin has been provided through a Medicaid waiver program, whereby the state & the feds together fund up to three years of intensive therapy (20+ hours per week) with the possibility of a number of years of post-intensive therapy. The autism diagnosis plus a certain level of disability qualifies a child for the program, regardless of parental income (though families do pay a small monthly fee that depends on income). The state budgets for a certain number of new clients in this program each year -- lately that level has been set at 200 new kids a year.

Unfortunately, the need has been greater than the waiver program could handle. A waiting list formed, and grew. In Joy's case, the time lag between her diagnosis at the end of 2006 and when her number came up on the waiting list was 18 months, plus another month until the first therapy (so the agency could assemble a team). And the waiting list continued to grow.

This was the setting in which the autism-insurance movement swung into gear here a few years ago -- if insurers could be required to pay for these therapies, the Medicaid-waiver portion of the program could focus on the uninsured, and more children overall could receive treatment. The legislation ended up broader than just the needs of children, fortunately, also applying to autism-related treatment for adults.

It took lots of advocacy and meetings and lobbying and rallying, lots of maneuvering and persistence. And now the autism insurance requirement is law. Wahoo!! Big happy thank-you and cheers to everyone who helped bring this about!

So. What now?

Well, nothing will change immediately. The next step is for the Office of the Commissioner of Insurance (OCI) to hammer out the specific rules for the insurance companies to implement, based on the law. The timeline for them to do so is five months. Then the insurance companies have to issue their new plans based on the rules. For state workers like me & JoyDad, the new plans should go into effect at the start of 2010.

Coverage must be at least $50,000 for intensive services (evidence-based behavioral therapy) per year, $25,000 per year for post-intensive (i.e. anything afterward, still must be evidence-based, so no coverage requirement for such things as hyperbarics and certain biomedical interventions).

As I understand it, the hope for how this is going to go is that the insurance companies will contract out the providing of the therapies to the agencies that are currently providing them under the waiver program.

I was initially concerned about a couple of things for our particular situation. One is that our HMO has been very particular about not wanting to cover anything not offered by their particular network. However, since the HMOs haven't been covering the therapies, that means the clinics haven't been offering them, which means they would have to totally start from scratch in developing such therapy programs, staffing them, etc. Contracting it out should be a much more attractive option, at least initially! (Conversations are underway, or so I hear.)

Meanwhile, our own Agency Two (which provides the baristas that serve up Joy's House Blend therapy) has a PhD-level therapist on the committee that's helping to formulate the Insurance Commission rules. This eases my mind about another worry, which was that the language in the law about "evidence-based behavioral therapy" might be interpreted as code-speak for "Applied Behavioral Analysis as practiced in Lovaas-protocol discrete trial therapy". Which is the protocol provided by Agency 1, the service-provider that we... umm... decided against. However, therapies that have a more relationship-based focus can also claim a legitimate place under the behavioral-therapy umbrella, as they successfully did when decisions about the waiver program were being made. And Agency 2 is right in there to help make those decisions fall the right way when it comes to autism insurance in Wisconsin.

It's pretty clear that families who have insurance will be required to make the switch, and cannot choose to stay on the waiver program. I wonder if this will turn out to be a costly deal for families with high-deductible policies? I was also wondering if we'd still be able to keep Joy's medical assistance at all, which pays for the diapers that aren't covered by our HMO -- it seems that we can at least hope not to get kicked off that, since the determination of disability for Joy should still apply.

Ideally, if everything comes up as sweetly as possible, we'll be able to stay with Agency 2, keep MA, and lose the ridiculous waiver-program rule that restricts the therapies to the home environment, so that perhaps we'd be allowed to have therapists work at Joy's daycare (as Birth to 3 and school district therapists have no problem doing.) We shall see. No guarantees on any one of those hopes, at this point.

There's a lot left to be worked out. And after the rules are in place, and the new insurance plans based on those rules take effect, I imagine things will get very hairy for a while as the autism-therapy service providers have to quickly staff up for an influx of new insured-clients who were either previously sitting on the waiting list, or had given up on the state program altogether but now will want to take advantage of the insurance coverage. I also don't know how the state is going to count the "waiver slots" that open up when people like Joy move over onto insurance funding. Will "her" slot come open in addition to the 200 new ones for the new fiscal year, or will it be one of the 200, which the state parcels out at an average rate of about 4 per week?

For all of the potential drawbacks and questions, I have no question that this was the right thing to do. Ultimately, more people in Wisconsin, children and adults both, will get the autism-related treatment they need. It's good to have something to celebrate, in a very difficult budget.

As Wisconsin's state motto says: Forward!