Just for Today, She Signed the Word "More"

We've seen it a couple of times recently.

Today it was unmistakable at lunch. Joy wanted more Kix. (What, you don't feed your children delicious nutritious breakfast cereals at lunch? C'mon!!) And when her portion was done, she very deliberately gave herself her own little fist-bump, the sign for "more" that has come and gone over the months, and come and gone. Who knows if it will be here tomorrow. Or even this evening.

Just for today, she's chewing the bejammers out of her super-strength chewy-toy. This overwhelming need to chew came back two or so weeks ago, I think. She's also leaving it clipped onto her shirt today. The last phase of super-chewing, she would let Lynda clip the chewy onto her at daycare, but would pull it off in a second at home. Who knows if she'll need to chew tomorrow, or if she'll leave the clip on.

Just for today, she's been pushing some boundaries. Climbing onto the toy chest to get to the TV. Climbing onto the glider-rocker in the living room, which she never used to do. Most of the time she's responding well to a voice-prompt of "Joy, down!" But who knows if she'll climb tomorrow, or if the voice-prompt will work tomorrow.

This weird uncertainty, this not knowing when the switches and sliders on Joy's mixer board will flip and slide, is making it a challenge to write her IEP, her Individualized Education Plan for the upcoming school year. Her school-district team leader commented to me the other day, after having combed through months of daily reports, that there are lots of times where we report something new starting, but then she often doesn't find a mention of when it stopped.

Well, yeah. At one point back in September I blogged that Joy had retrieved the word "ma-ma-ma". A week later, I wrote,

And we never know, from day to day, whether this day will be the last day that she says ma-ma-ma for the next year. We can't take any gain for granted. And that's very, very hard.

Guess what. One day, probably not too long after that, was the last time I heard "ma-ma-ma". But I don't know what day it was, because when she said it for the last time, I didn't know it was the last time. I don't even remember when I realized, "Hey, where are the ma-ma-mas?!"

So we end up not having a good record of when things go away, either the things we want to go away (like the night-wakings, still with us, alas!), or the things we desperately wish wouldn't go away. Like "ma-ma-ma."

It's funny, but it almost feels as if IEPs are written with neurotypical children in mind, in that way. You write goals, with the general expectation that the child will make documentable progress toward those goals, so you can record when a goal has been met and set new, higher goals. It's not set up for our reality, which is more like, "Joy was doing this thing pretty well in the fall. Then she didn't do it for a long time. Now she does it sometimes but not always, and we don't know why she does it some times and not others, and it might disappear again, who knows."

So, what goal shall we write for whatever "thing" it was? Do we keep trying to teach it? Do we figure she knows it but doesn't show it? If she doesn't do it, how can we build on it?

IEPs are not built for living in the moment.

And today, just for today, maybe even just at lunch...

Joy signed the word "more."

Hoop Dreams

OK, I got some of the leftovers off my plate. Drew up a press kit page for the handbells web site, revised a document regarding Joy's strengths and our ongoing concerns for her upcoming IEP, and (this is a big one) got the files sent to the printer for the book of my late mother's autobiographical writings that I've been working on editing.

Now I can write about the weekend.

Our big event this weekend was our church's annual winter retreat. Every February we gather at a retreat center by a state park about an hour's drive from here for a weekend of fellowship and a Sunday morning worship service. There are games, there are crafts, there are communally-prepared meals, there's a talent show, there's sledding and skiing and hiking. It's a wonderful time.

February 2008 (i.e. last year's) retreat was a disaster as far as Joy was concerned. She was still slumping from a big regression that had started that Christmas, which stole her language and affected her behavior. She was having several knock-down seizures a day, each of which took an hour of intense comforting to recover from. In retrospect, we think there may have been a virus involved too somewhere along the line. At any rate, we took her to retreat anyway, and she just got more and more miserable as we went. In between seizures she went tearing around the center fussing and leaving a trail of destruction. We were hoping that naptime would be at least a break, but instead of napping or playing quietly, she stood up in her tented pack-n-play and screamed bloodly murder. For ages, with no sign of stopping. Finally JoyDad took her home. I stayed at the retreat with Rose, exhausted and wrung out like a limp washrag. It was a hard time.

This year was a huge contrast.

Touch wood, y'all, but Joy hasn't had a knock-down seizure since mid-September. That was the first major thing. Second, she did not have the Christmas regression. Third, her boundaries have improved and she's more willing to hang out quietly on my lap while something else is going on. Fourth, her mood is happier on the whole.

With this background, I was willing to even take the girls to retreat solo on Saturday morning. (JoyDad came up later that afternoon; he had a memorial service to attend at noon.) Joy was contented throughout the slightly nerve-wracking trip as the snow was falling pretty hard. When we arrived, we had a friend all lined up to watch Joy while I unpacked the car. Joy hung nicely with me through the next event, which was a group game involving speed-singing of hymns and competitive reading of Bible verses all full of unpronounceable names. Much hilarity!

Since Joy has been skipping naps most days anyway, we didn't even try to put her into her travel tent. Instead, another friend volunteered to watch her for a while so I could go participate in a book discussion. Funny enough, the book discussion actually was sparked by this humble blog, from when I posted back in November about Tracy Kidder's book Mountains Beyond Mountains. A friend from church who keeps up with Elvis Sightings was intrigued by my recommendation and organized a group of people to read the book and discuss it at retreat! It was a fine conversation, with thoughtful articulate people, several of whom had been to Haiti themselves and/or work in medical professions (the book deals with a charismatic physician whose primary work is among the poor in Haiti). All in the context of beautiful snow falling gently outside the huge windows.

When I got back to Joy, her baby-sitter -- who has a grown son with a spectrum diagnosis in context of a different genetic condition than Joy's -- said they'd enjoyed their time together. "She's very smart, you know," she told me. Bless her for seeing it!

Our smart little girl kept it all together despite the lack of nap. She even surprised us at dinner time by eating her entire helping of macaroni with her spoon, with no prompting from us! She usually digs in with her fingers.

But when are we going to get to the hula hoops, you ask? Well, I'm glad you brought that up.

I mentioned earlier that the retreat features a talent show. This year, Rose decided that she wanted to do a hula hoop act. So she and JoyDad concocted a number wherein JoyDad played Wipe Out on his electric guitar. She has never taken a dance class, and I (not a dancer by any means) have been her only hula hoop teacher. However, she has such a sense of rhythm and has done a bit of group dance routine stuff in gym. And with those natural tools, she put together a wonderful piece where she shimmied and strutted back and forth with that hula hoop a-swirling, dropped to her knees and came back up repeatedly, and then let the hoop drop to her ankle and hopscotched it around with the other foot. All in perfect time to the screaming guitar.

The crowd went wild.

Video of this amazing act does exist, but we've got some technical hurdles before we get it onto YouTube. If you'd like me to e-mail you the link when we get it ready, say so in the comments or send me a message.

But that wasn't all. See, Rose decided to share her hula-hooping delight in another way. She brought all seven of her hoops along, and made them available in the main gathering room for the use of all the retreat participants. (I did promise that I'd replace any breakage.) It was amazing how the hoops resonated with all ages and shapes of people. From the short to the tall, from the curvy to the beanpole, from the toddlers to the highschoolers -- male and female both! -- to the highschoolers' parents, a huge range of folks got into the act. The height of the hilarity happened after the post-talent-show ice cream feast, when JoyDad plugged his guitar back in and played music to hoop by: more Wipe Out, Johnny B. Goode, one song after another after another. He played till he started to wear out the fingernail on his pick hand!

Well, some of the attendees were joking that hula hooping might lead to... DANCING! (verboten among the more conservative Mennonites, but this crowd is pretty far out on the progressive end of the Menno spectrum, as it were.) And after JoyDad unplugged, sure enough, out came a couple of iPods to plug into the sound system. Line dancing! Cotton Eye Joe! Jump Around! My fellow Mennos and I boogied till I think I strained every muscle in my body that hadn't already been hula-hooped out of whack.

Then I played Boggle till midnight. Which made 20 hours straight of wakefulness, seeing as how Rose had awakened me at 4 am Saturday morning to present me with one of her two front teeth which she had finally wiggled out.

Then Joy woke up at 2:30 and started commenting loudly... I'm afraid I don't remember much of the next morning's worship service, though they tell me I was physically present. It was quite the night.

I actually did make it to the regular evening worship on Sunday too, after everyone had headed home and sorted themselves out. Rose surprised me during the sharing time part of our service ("joys & concerns"). She stood up on the chairs and declared loudly that she had a joy. She wanted everyone to know she was so happy that people had so much fun with her hula hoops at retreat.

There. As JoyDad commented on my last post, this is probably the only blog on the Interwebz that combines hula hoops, dancing Mennonites, and screaming guitars!

Procrastination

Procrastination tastes like a casserole
     of fridge-worn leftovers.
Pretend to ignore the mold;
What you can't see won't hurt much.
Add a bulging can of tomato sauce
     and too much garlic.
I know you can't finish it.
Neither could I.
Tomorrow's lunch --
     Leftover casserole.

I wrote that poem twenty years or so ago. Some things don't change much!

Too much stuff to do right now. Must get some leftovers off my plate before I do another REAL post. That next real one, however, will entail hula-hooping. And screaming electric guitar. And dancing Mennonites.

Till then!

Rules

So I had in mind to start this post with some cute collection of rules in our household, maybe some particularly quirky ones related to Joy's autism. But then I found a link from Quirky Mom to a most excellent post by One Sick Mother, who writes about Rules, Damn Rules, and Statistics. She structured the start of her post the way I'd hoped to do mine, only better than mine was coming out. So, go read hers, and remember her introduction. Then come back and finish mine.

One Sick Mother's well-deserved rant was about the rule-of-thumb kind of thing that physicians use in making their diagnoses, such as "Kids under the age of one don't tend to get strep." The problem comes when the rule becomes inflexible and exceptionless, morphing into "Kids under the age of one DON'T get strep." Her kiddo, of course, got to be Exhibit A of how the rule needed some flexibility.

I'm going to rant about discuss rules that need flexibility too. We've had several examples lately of program rules that are designed to prevent various kinds of inappropriate behavior. Such rules (when not administered with flexibility) can have unfortunate consequences for people who behave WELL.

Here are the examples:

1. From Agency 2: Parents and therapists must behave professionally toward each other at all times.


2. From Project Lifesaver: A year's supply of batteries and bands for the Project Lifesaver radio-tracking device may be administered by someone other than the sheriff's department. However, that "someone" may not be the caregiver of the person wearing the band.


3. From the state: Intensive autism therapy hours must happen in the home with an adult present in addition to the therapist. Preferably that adult should be a parent but really any adult over the age of 18 will do. Any therapy hours in other community settings must be applied for in advance, with detailed goals, and approval will only be for 3 months (at a time). You can't do more community hours than 25% of the therapy hours you have scheduled in the home.

We have encountered different levels of flexibility with these three rules.

The administration we've encountered with Rule 1 is, in my opinion, a beautiful example of how flexibility should be employed. In my post about the baristas, I had written,

I enjoy getting acquainted with our team members. Despite the official warnings in the paperwork about professional boundaries, I find that we share nuggets of our lives in conversation just because we do spend so much time together.

Our lead therapist read that and reassured me at our next meeting. She said she had no worries at all about barista-boundaries at our house, not even the informal data we've been collecting about who's got tattoos! (For the record, on our Agency 2 team there are 3 baristas with tattoos and one former Harley-rider. Which I think almost counts.) The rule, she explained, is there because not all families do have healthy boundaries, and sometimes parents will try to do things like glom on to a therapist as a Best Friend Forever or otherwise make unwelcome overtures. In which case -- it's very useful to have the rule to enforce.

Flexibility! The idea that not all families have to be punished because some families abuse privileges! Is that cool, or what?

So then we have the Project Lifesaver rule. I love the idea that the batteries and bands for the radio device don't need to be administered by the sheriff's department. It's been a hassle both for us and them to have us truck out to the station once a month or have them come to us to do the monthly battery replacement, plus it freaks out the neighbors to keep seeing squad cars in front of our home.

But. How silly is it that we have to burden someone ELSE with the battery storage and installation, and can't do it ourselves? We who can administer epilepsy meds three times per day for months, nay years, and never (OK, rarely) miss a dose?

Alas, there's no flexibility for the sheriff's department on this one. The rule comes down from Project Lifesaver Central and the deputies have to comply. So, we'll find a way to make it work. Our Wonder Woman daycare lady Lynda has agreed to get trained in how to do the monthly battery installation, and take delivery of the year's supply of batteries and bands. I'm sure we'll (wink) be able to work something out.

And then there's Rule 3. The biggie. The one from the state that says we have to have our House Blend therapy at home.

This rule was not always in place. At one point, therapy could happen at daycare as well as in the home. Lynda has experience with a previous kiddo at her daycare whose parents both worked full-time, and the child received oodles of House Blend hours at daycare. Which was great! Lynda's place is "therapy heaven," as one of our previous speech therapists put it. It's a home away from home, Lynda generally only has 6 kids at a time, she does a great job of participating in therapies and learning techniques and making suggestions and keeping everybody in the loop.

Unfortunately, there were apparently daycare situations that were not so ideal. Plus there came a budget crunch and a cutback in the number of hours that would be funded. Suddenly the pendulum swung crazily in the other direction. Therapy at daycare became suspect; therapy anywhere outside the home became suspect.

So, here's the ridiculous situation we find ourselves in. We have a glorious daycare setting, an ideal therapy setting, a home away from home. Joy's been going to this daycare for a couple of years, where she gets to be with peers and gets all the extra enrichment that Lynda's place offers.

If we'd had Joy at home alone with an au pair or a grandma or other one-on-one babysitter (anyone over the age of 18), the state wouldn't bat an eye at sending the therapists to that type of daycare setting. Which, in the case of a one-on-one paid provider, is generally more expensive than group daycare, which amounts to discrimination against working parents who don't have a lot of extra dollars to throw around.

But because we want her to have some therapy hours out of the home (four hours a week! only four, out of twenty-something!), we have to write these elaborate applications for three-month goals, with plans for how we're going to transition out at the end of those three months even if we're going to apply again. The most expensive member on our Agency 2 team (the lead therapist) is spending HOURS on these applications, plus daycare visits and documenting and generally going to bat for us.

Our first three months of therapy at daycare are winding up. The application for another round is in right now, though there have been several requests back from the state for further information and documentation. More administrative/clinician time and effort. For a lousy three more months, that might or might not be granted, and if granted, might be the last three months of House Blend therapy at daycare Joy gets to have.

Is this outrageous, or what?

Damn rules.

WI Assembly Hearing on 2009 Autism Insurance Bill AB15

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

The hearing on AB15, a bill to require insurers in Wisconsin to cover autism treatments, is going on right now (morning of 2/19). (Actually it's on the substitute amendment offered yesterday, Feb. 18, to bring the WI Assembly version in line with the WI Senate version, about which I blogged earlier this month and which sailed unanimously through committee and is now awaiting scheduling in the Senate).

JoyDad is there to testify. I reviewed his testimony early this morning -- it looked good, and much better thought out than my extemporaneous testimony on the same issue two years ago! But I had Joy with me then, an advantage he doesn't have since she's getting a House Blend therapy session right now. So maybe it all evens out.

Good luck, JoyDad! Will update later.

Update as promised:

Testimony is done! Wow, marathon hearing. JoyDad had to wait a long time to speak his piece, and the hearing went on for several hours after that. Between 5 & 6 hours, maybe? Which is good, because it means a lot of people showed up. It appeared that they were all speaking in favor, which seems to be the pattern, though I only listened to parts of the hearing via streaming video. I will post the link when they get the video back online. (UPDATE: WI Assembly Committee On Insurance hearing video on AB15 here.) Anyway, the opposition doesn't show up, just turns in written testimony and thereby avoids meeting the passion of the parents face to face...

JoyDad would have preferred to testify without having had to wait so long, getting more keyed up by the minute. He says he tried to speak slowly, but went faster than he'd planned. That's OK, they had to cut off other speakers who went too long! One surprise was that JoyDad didn't get any questions from the legislators. He'd been rather looking forward to going head-to-head with a certain Assemblyman, but the guy was out of the room at the time.

In honor of JoyDad's efforts, I'm providing a link to an MP3 of a song by his band.

The name of the song is Testify! Not only is the title beautifully appropriate for the day's activities, it's also a fine running tempo for me. As the lyrics say repeatedly, Woo-hoo-hoo!

(If you'd care to buy the album, you may do so online at CD-Baby. Thus endeth the advertising plug.)

Further Update (March 5): The Autism Society of Wisconsin has announced that the Assembly Committee on Insurance will vote on AB15 on Thursday, March 12. The measure is expected to pass, and would then be forwarded back to the full Assembly for scheduling.

Further Update (May 7): The committee vote was cancelled and has not been re-scheduled. Someone on the committee is uncomfortable about something. The holdout is probably a Democrat, because Democrats have the committee majority and the Democratic chair had indicated the votes were there to pass it, so a Republican's opposition wouldn't have held things up. Rep. David Cullen of Milwaukee, Rep.Cullen@legis.wisconsin.gov, is chair of the committee. A bit of citizen input to Rep. Cullen and other members of the Assembly Committee on Insurance would be apropos!

And yet a Further Update (May 14) -- According to Wisconsin Autism Insurance Now, the autism insurance bill has been referred to the Joint Committee on Finance (which I think means that it's back out of the hands of the Assembly Committee on Insurance, so Rep. Ziegelbauer's misplaced concerns will no longer be the determining factor...) The site goes on to say, "We have been told by leaders in both houses that the bill will be considered in the context of the state budget -– either included in the state budget or accounted for and considered immediately after the state budget."

Updates R Us (May 29) -- The Joint Finance Committee last night passed Motion 700, an omnibus set of budget provisions that includes the autism measure (on pages 20-22). This will now go back to both the WI Assembly and Senate as part of the budget bill, no longer as AB15/SB3. With the time-pressure to get the budget through, and as a tiny part of a much larger whole, and with the support of the leadership of both houses plus the governor, it would be a whole lot harder to kill at this point. Apparently nobody even TRIED to kill it last night, having bigger fish to fry -- but all of the minority party objections were over-ridden along party lines anyway. I've made this all into a separate post too, but will continue to update here so it's all in one place for my Google visitors (welcome!)

Knows What She Wants, Knows How to Get It

Joy had a stimmy, scattered House Blend therapy session while I was at handbells last night.

Even with a chewy-tube clipped onto her dress, she was still perseverating on stimmy toys to the extent that the barista was having a hard time getting through. The stimmy of choice was a My Little Pony, who was gettin' her pink mane intensely chewed upon.

The barista eventually hid the pony away.

Joy proceeded to go find the pony-photo in the photo binder, yank it off its velcro, and hand it over emphatically.



She got her pony back. Wish I'd been there to see it.

Only She Who Is Running Knows

From the comedic genius of PDQ Bach, in his ground-breaking work Iphigenia in Brooklyn:

Oh God, who knows what it is
To be running?
Only he who is running... running... running... knows.
Running, running knows,
Run running knows, run running knows...!!!

Kleenex, anyone?

Any run outdoors in winter is going to involve Kleenex for me, and yesterday's 5K was no exception. It was a gorgeous day, though. The race started just after 11am, under bright-blue skies, temperature right around freezing, light winds, sunshine glistening on a 2-inch layer of snow that had fallen the night before. Most of the race was along cleared bike-path, so we were really only running on snowpack for a few blocks of city street.

The race was a lot bigger than my friends and I had expected. From past years' posted results, it looked like the usual turnout was around 120. This year? 430! I wonder how many registered same-day, once they saw what a nice day it was.

My personal goal was to run an 11-minute-mile pace, for a total time just over 34 minutes.

I ran it in 33:15, for a pace of 10:42, running all the way. I even had enough steam left to put on a bit of a sprint at the end, passing up the woman I'd been pacing behind for much of the race. I guess if you take off the ten seconds it took me to cross the start line, that's 33:05. Fastest I'd ever gone, even on the treadmill! I placed 383 of 430.

WOOO HOOOOOO!!

I enjoyed having friends along so we could share one anothers' excitement. The woman with whom I shared the Couch to 5K link back in November at the Women's Retreat had been training with her husband, and their two sons (10 & 13) came along for the run too, pretty much without training but they play soccer so they run well. All of us were happy with our times. The young'uns beat the pants offa me, but who's counting, right?

Then last night we all went over to their house for dinner. Joy was in a fine mood, ate well and sat happily at the dinner table for a long time, playing with the plastic from around the ice-cream carton while the rest of us talked. The 13-year-old entertained Rose very obligingly, without a hint of teenaged-guy-attitude. (Rose kept her own attitude in check as well, not complaining about the curry main dish but simply saying "No, thank you" as we had coached.)

Wow. Now I need a new running goal! Shave my 5K? Ten-minute miles, anyone? I wouldn't have believed it when I started...

One thing I failed to bring to the race was a camera. Here are some older running-related photos for your entertainment, though:


This photo from September 1991 was, if we're being picky and technical, my other first 5K. It was a fun-run/walk at a Mennonite Relief Sale, a fundraiser for international relief work. I had just finished a 2-year stint of Mennonite volunteer service in Chicago at the time, and a local pastor cobbled together a team with me and one of my former housemates and a couple other guys. I don't think I trained much if at all, and don't remember much about the race either. Like, I don't remember the starting gun, though I do have some flash memories of the actual running, including near the end when I was passed up by a race-walker! I didn't know enough to look at my time on the clock at the finish line, so I have no idea how fast I went (if they were posting times, I wouldn't have known where to ask anyway).


I wore the shirt again eleven years later, at the SCAATY Run in Chicago, September 2002 (Rose, hiding in the stroller, was seven months old). SCAATY stood for Still Crazy After All These Years, and was organized by Uncle Marathon in honor of his 20,000th mile running. Yes, you read that right. Twenty thousand. He'd been keeping logs since he started, something that I've now been talked into doing, and organized a run to invite friends and relatives to join him in running mile 20,000. It was a nice little bit of post-pregnancy training for me, just to get to the point of jogging a mile, and JoyDad and I had fun joining in the 20,000th mile run and festivities.

Don't worry, this isn't going to become a running blog. I might sneak in updates now and again, though.

P.S. Many thanks to Auntie RatM and Uncle Marathon for the tips and encouragement leading up to this race! Yes, I did start near the back, and double-tie my shoelaces!

Happy Birthday to God's Hands

Rose turned seven yesterday.

That's, like, halfway to high-school. Oh, my baby!

We've been celebrating for days -- restaurant outing on Saturday, party at our house Sunday, cookies and paper crown at school yesterday morning, family presents & cards in the mail last night, probably a few cards yet to arrive.

She's such a fascinating combination of old-soul and pre-teen and sweet innocent child. Oh, and little snot, too.

The pre-teen Rose was kind of hoping for a Jonas Brothers CD or Michael Jackson.

The innocent child was just as thrilled to get an Imagination Movers CD instead (Juice Box Heroes!)

The little snot is having trouble making herself convey the proper thank-yous to relatives sending her gifts in the mail (we're working on it!) Although, I had to remind JoyDad that he developed a reputation in his own immediate family as a youth for ripping open a birthday card, declaring "No money!" and tossing it dramatically aside...

The old-soul has been delighting her Sunday School teachers.

I heard from one of her teachers awhile back, who was touched at how Rose is always excited to talk about her little sister in class when they discuss the events of the week gone by.

Last night I heard from her other teacher (who also happens to be one of Joy's baristas) about their project this past Sunday.

The lesson involved one of the healing miracles of Jesus, and the idea that we are called to be God's healing hands in the world. To expand on the idea, they created a poster together, tracing their hands and adding other illustrations as well.

As the poster-making was drawing to a close, Rose had one more idea. She began drawing a smooth, looping line connecting all of the hands on the poster and the other illustrations. "That's God's love," she said, "running between all of us."

Amen. And, happy birthday!

Icky Bicky Soda Cracker

We actually got the snow cleared off the deck over the weekend as the weather warmed up, and un-earthed (de-iced?) Rose's jumprope. Such fun to do springtime activities again! I was dredging my memories for counting rhymes for her, and came up with this one:

My mother, your mother, live across the way
Every night they have a fight and this is what they say:
Icky bicky soda cracker
Icky bicky boo
Icky bicky soda cracker
Out goes you!

Maybe "icky bicky" is what Joy has been trying to say lately...

In the past couple of weeks, Joy has been fine-tuning a two-syllable utterance. It sounds something like this:

• ICK-ee


• EYE-go


• ACK-er


• UGH-go

Now, one of the precepts of the Hanen & Communicating Partners training that I wrote about earlier is that you honor your child's vocalizations. Even if you don't know for sure what the intent is (or if there's any intent at all), if you encourage the vocalizations and treat them as legitimate communicative turn-taking, you encourage the patterns of social interaction and the idea that "when I say THIS sound, they think I mean THIS!"

So if there's anything at all that fits the sound, that'll be how we interpret it. Or if there's nothing in context that fits, we'll just imitate or play with noises. Anything to take a communicative turn.

You would be amazed at how many things the ICK-ee/EYE-go/ACK-er noise can mean.

Buckle! This one actually feels legit, in context of Joy buckling herself into her booster chair at food time.

Cracker! Speaking of food... again, we've had some really neat exchanges where it absolutely does sound like cracker.

Tickle! I heard her going back and forth with "tickle" with one of her baristas yesterday. Sure sounded real.

Thank-you! Does she know what this means? It's definitely felt like she's imitating it...

Got it! She used to have this phrase in a solid, stand-alone way, back when she had 80-some words.

Hot dog!
Echo!
Doggy!
Icky!
I go!
Blanket!
All-gone!
Icky? Bicky? Soda Cracker?

An incredibly useful utterance, wouldn't you agree?

Meanwhile, there are a few other vocalizations in the mix. Yesterday the "tickle" barista also got Joy to imitate "b-b-b" and "p-p-p" sounds. We're also getting "go" for go and "guh" for hug from time to time. Yesterday she started saying "no-no-no" just moments before attempting to climb onto the table on the deck, something she knows is a "no-no"!

We'll keep tracking this talking stuff. It's in there somewhere.

Meanwhile, when I told Rose the "icky bicky" counting rhyme, she giggled and then asked what the mothers were fighting about. I told her I had no idea, but later it occurred to me...
Maybe they're on opposing sides in the various autism controversies...

My mother, your mother, live across the way
Every night they have a fight and this is what they say:
Icky bicky DAN! doctor
Neurodiversity too
Icky bicky Andrew Wakefield
Out goes you!

More About Wisconsin Autism Insurance Legislation

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

I got a whole bunch of search engine hits yesterday looking for information about the pending legislation for autism insurance in Wisconsin, due to my post last month about the bill introduced in the Wisconsin Senate (SB3). There was a segment on the show Here and Now on public television last night, and other news coverage I'm sure. Things seem to be happening fairly quickly.

So, here's what I know.

The original author of the bill, Senator Judy Robson, introduced a substitute amendment yesterday (Feb. 6), with some added particulars. In my last post, I mentioned the lack of a dollar cap. That has been addressed in the new version:

The coverage provided must be at least $60,000 for intensive−level services per year per insured, with a minimum of 30 to 35 hours of care per week for a minimum duration of four years, and at least $30,000 for post−intensive−level services per year per insured. Beginning in 2011, the minimum coverage monetary amounts will be adjusted annually to reflect changes in the medical consumer price index.

Another shortcoming of the previous version of the bill was that it did not specifically mention speech-therapy or occupational-therapy services, a common insurance exclusion. The new version does specifically include these.

There is still no age cap mentioned -- this is deliberate. The intent is for insurance coverage across the lifespan. Apparently there were shenanigans in Texas after the law was passed and it went to the insurance commissioner to hammer out the administrative details, at which point an age limit was imposed. Ugly result; I understand, though, that in this state the Autism Society of Wisconsin is on the case.

The expectation for this framing of the autism insurance proposal is that it will result in approximately 1/3 of the kids currently covered by the Medicaid waiver in Wisconsin (the intensive autism therapy program that provides Joy's House Blend) being covered by insurance instead. Very helpful for the wait list!

There is a public Senate Committee hearing on the bill this coming Monday, Feb. 9, at the Capitol in Madison at 10am. JoyDad and I are unfortunately tied up at work, but I hope there's a good showing.

Here's a link to more information about the progress of Senate Bill 3 (the legislative history).

The companion bill, introduced in the Assembly, is Assembly Bill 15.

If you would like to sign up for e-mail updates on these bills (or any Wisconsin legislation), you can do so with the Wisconsin Legislative Notification Service.

You can also check the Wisconsin Autism Insurance Now site, which does a good job with talking points, but perhaps not so good with up-to-the-minute updates. What I've written here is, as of today, much more current than what they've got up.

I think it's time for Wisconsinites to start writing letters / sending e-mails / making phone calls to state representatives...

I should perhaps also mention that there's a Republican response out there as well. This seems to entail throwing just enough money at the Medicaid waiver program in a one-shot pacification maneuver to get people to stop talking about insurance, without any ongoing support for future years or for what happens after the intensive phase is done. Weak.

Last time I posted an outdated link to a map of autism insurance initiatives. Here is one from Autism Speaks that is much more current, and allows one to sign up for e-mail alerts in their own state.

Money is tight, in Wisconsin and everywhere. But I think we've got momentum this time.

Update Feb. 12: It looks like the Senate committee hearing on Monday had good attendance and lots of personal testimony. For the record, here is a link to the streaming video of committee proceedings. The committee voted unanimously the following day to recommend the bill back to the full Senate for passage. Bipartisanship, can you even believe it?! SB3 as amended is now awaiting scheduling for a Senate vote.

Update Feb. 19: See more recent post about the hearing on the Wisconsin Assembly version of the bill, AB15.

A House Blend Session

I think we've got enough layers in place for this to make some sense.

Besides, we had rather an amazing session with Joy's Tuesday-afternoon barista, that I'd like to share.

This was a 3pm-5pm afternoon session; the House Blend sessions are two hours long, minus 15 minutes at the end for record-keeping.

We have a consistent routine to begin and end the sessions, something that started all the way back with one of Joy's first Birth-to-Three therapists in 2006. At the beginning of the session comes a song to the tune of "Goodnight, Ladies" that goes:

Hello Joy,
Hello Joy,
Hello Joy,
It's time for us to play!

At the end of the session comes a song with three verses (I don't know a name for the tune): one verse for clapping hands, one for stomping feet, one for waving bye-bye. We have tiny reminder-notes taped to the outside and inside of the front door to help make sure that the songs happen.

The timing of the afternoon sessions is such that it generally starts with snack.


Joy has become a pro at yanking and handing over the photo cards. In fact, there was one snack over the weekend where we wanted to serve her something that wasn't on the photos, so we didn't bring the book out, and she was mildly cranky at not having her useful tool available! (She wasn't upset enough to refuse the tortilla chips... But I digress).

So after a suitable run of repeated photo requests for small servings of bunny-cracker and apple and milk, it was over to the living room for some jumps and pillow-squishes. I think that's all they had time for before our playdate guests arrived!

Since I have to be at home for these afternoon sessions, I'm no longer available to pick Rose up from school. Instead she comes home with neighborhood friends, a lovely family with a Rose-aged daughter and a 3-year-old son. Wonder of wonders, the mom is an early-childhood therapist (ST) herself and "gets" our situation without all the effort of edu-ma-cating on my part.

Joy's playdate was with the son. We'll call him J-Cat, short for Jellicle Cat because he is currently fascinated with the musical Cats. I could totally see him as Mr. Mistoffelees in the 2030 Broadway-revival...

As soon as boots and snowpants were shed, Rose and her pal disappeared into a back room, and J-Cat and his mom came to join Joy in the livingroom. J-Cat gravitated to a bag full of soft-blocks, so that became the first game. The barista held Joy between her legs, J-Cat sat between his mom's legs, and they took turns trying to toss a soft-block to the other. We used short verbal cues for things like "Joy's turn!" "Catch!" "Ready, set..." (wait for Joy to maybe chime in...) "GO!" And lots of encouragement & cheering & praise. Joy took a lot of support to play the game, but tolerated it -- like all things, up to a point.

When Joy started protesting, we cajoled her into "one more turn" and then it was her turn to pick the next game. The barista whipped a couple of toy photos onto the notebook, and Joy picked the Farm See-n-Say. So then the See-n-Say passed back and forth, with each kid getting a turn to pick an animal and pull the lever.


"Joy's turn!"
"Pull!"
"Duck... quack, quack."
"OK, J-Cat's turn!"
"Old McDonald had a farm, E-I-E-I-O!" (everybody claps along, Joy with support)

Joy didn't say much, but she made definite selections when offered choices, and took good turns with pulling or pushing or whatever the toy was. We played ring-stack, and blanket-pulls, and a train-toy, and another See-n-Say (an older bigger one with a stiffer lever, featuring baby zoo animals), and mini-trampoline jumping, and tunnel crawling. Joy needed some jump-breaks from time to time, while J-Cat needed some breaks to sing and dance for us.


After about an hour, both kids had hit their limit of such structured turn-taking. J-Cat wanted to play an imaginative game with his mom involving play-food, not one of Joy's strengths. So while they did that, somehow the very basic 3-hole shape-sorter came out as something for Joy & the barista to do.


What happened next was magical.

Joy pulled the lid off the shape-sorter, dumped the shapes, and started working to get the lid back on (accomplishing it with just a smidge of help.) The barista handed her one of the shapes, and Joy went right to work trying to get it in (again with just minimal help). Once she succeeded in getting the edges lined up correctly in the proper hole, she paused... and looked at the barista... and twinkled with anticipation.

The barista built the anticipation with a rising tone of "ahhh... ahhh..." (Imagine winding your way up to a theatrical sneeze.)

After teasing through several sounds of anticipation, Joy let the piece fall into the bucket, and began giggling like crazy, getting rewarded with praise and a tickle.

They did this again... and again... and again. They went through the entire bucketful two times, and then it was time for record keeping and the barista had to go fill in the binder. But Joy wasn't done. She went through another whole iteration of the bucket with me! And then I got up to go check on Rose, and Joy still wasn't ready to be done. She took the lid off once more all by herself, got out four pieces, got the lid back on, and ran the show all alone for two pieces' worth, looking all the way across the room to where I stood at the doorway, to make sure that I was watching and reacting appropriately.

After that we had to say goodbye to our guests, sing the ByeBye song after the report had been written so the barista could get out the door, and get ready for dinner.

There ya go. How's that for a House Blend session?

Right now we've got the playdate thing happening once a week. The rest of the sessions at our house are generally one-on-one, though Rose inserts herself into the action from time to time. Then twice a week we have sessions at Joy's daycare, with a very different dynamic among a roomful of peers (I'm never around to witness these since I'm always at work, but she's been able to do some neat things with support like join in on dress-up play.) At this point we've got 12 sessions on the schedule per week.

It's not always this awesome, by a long shot, but it's fun to share a good one!

By the way. J-Cat's mom is very pleased with these playdates too (besides being a phenomenal partner as the action is taking place). All this structured turn-taking practice is GREAT stuff for J-Cat as well as for Joy.

Bunnies in Winter

What do Wisconsin bunnies eat during a cold snowy winter?

We rarely catch them in the act, but we know they've been there!

They nibble birdseed at the base of the feeder:



They munch the raspberry canes:



They chomp the lower branches on the lilac bush:



They chow on compost:



And then there are the spoiled indoor bunnies. Look what they get every night:




Just to make this a little bit Joy-applicable -- at one point she did have a word for bunny (buh-buh) but we haven't heard it for a while. She has lots of bunny toys in addition to the real bunnies! And she does appreciate the real ones. Likes to go rattle their enclosure, and stick her hand in to try & pet them, and giggle like crazy when they hop away!

She also, ummm, tends to treat the evidence of their outdoor presence as something akin to raisins. Remember, this is the girl who eats banana peel... We do have to keep a watch on her outdoor activities as winter turns to spring, before all the droppings revert to the soil and get covered up as the lawn springs green.

Spring. Ooh, does that sound good. I bet the outdoor bunnies are looking forward to it even more than I am.

The Best Social-Communication Teacher

When we first got Joy evaluated and into the Birth to Three early intervention program, we had an interesting stroke of luck.

The program was short on speech therapists, didn't have one to assign to us right away, so gave us something else instead. I got a couple of months of weekly training in parental techniques to encourage communication, using the Hanen program and the book It Takes Two to Talk. (There's another version of the program that's focused on ASDs, called More Than Words, but we didn't have a diagnosis at the time.)

The Hanen training gave us a magnificent foundation for getting more out of Joy's communication, turning us into better Joy-listeners and communication partners.

The Hanen program was founded in Canada for the very situation that we were facing: frustration with long waits for professional speech therapists, families who needed to get started "right now." It's an incredibly empowering approach. As their site says,

The goal of It Takes Two to Talk is to enable parents to become their child’s primary language facilitator, thereby maximizing the child’s opportunities for communication development in everyday situations.

Some of the highlights of the Hanen program, for me:

• An emphasis on meeting your child where she's at. This includes a very basic physical principle of positioning yourself to be really face-to-face with your child, rather than talking at her from on high. But it also entails letting you child show you what she's interested in, and paying close attention to her cues, and responding in a way that stands a good chance of drawing a further response. It Takes Two to Talk calls this the "Tuned-In Parent."


• An emphasis on playfulness and fun. As in, your kid's going to be much more interested in sticking with a social interaction if it's enjoyable all around. Let go of thinking that you have to make them talk (how many times have you heard an adult doing something like: "Hey, Joy, can you say 'spoon'? C'mon, say 'spoon' honey. Say 'spoon'!" and then she doesn't say 'spoon' and it gets totally un-fun for everyone.) Instead, enjoy what interactions they *can* do... maybe pretend to eat from the spoon. "Mm, good food!" then pass the spoon back and say "Joy's spoon!" and maybe she can pretend to eat too....


• One acronym I actually remember from the program, which is OWL, for Observe, Wait, Listen. Observe to see what your child is interested in. Wait to give her enough time to send you a message, whether a sound or gaze or action or whatever (it helps to lean forward and look expectantly, sending your own message that you are indeed waiting for a communication!) Then Listen for your child's message, paying attention to as many cues as you can. Even if you can't understand what her response, if you've waited and watched, you can often take a good guess and respond accordingly. Or else take a turn by imitating... and then OWL again to give your child the next turn in the interaction.

I found that a lot of this came pretty easily to me, once I took the time to think and practice. Of course there were many more steps, and thought-exercises, and we also got several video-taping sessions with the speech therapist who was leading the training so she could comment and critique how we were putting the principles into practice. It was simply thrilling to see Joy respond.

Well, another reason we ended up doing Joy's intensive autism therapy with Agency 2 and their House Blend was that their approach builds on similar principles. In fact, the James MacDonald (PhD) that I've mentioned before was involved in developing the Hanen program early on, and much of that work is evident in the Communicating Partners program that he later developed. His latest book, Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation, co-authored by Pam Stoika (PhD), is a highly-readable explanation of the approach and strategies. (Plus it's reasonably priced, what a bonus!)

The parent-empowerment agenda is powerfully stated on the very first page.

If you are concerned about your child's social development, communication skills, behavior or learning, the first and most important thing to do is to find a person (or small team of people) to be your child's social language teacher. In our experience, your child will make the greatest gains with a social language teacher who is:

• Someone who is already a competent communicator, with words as well as gestures and non-verbal communication.


• Someone who will be available to teach your child in a variety of real-life settings, such as play time, chores, meals, family outings and daily routines


• Someone who your child likes and trusts, and who likes and trusts your child


• Someone who is familiar with and dedicated to supporting the cultural and family values you hold dear


• [the list goes on!]...

Mothers and fathers, grandparents and guardians: go to the nearest mirror and look.

You just found your child's best social-communication teacher.

So, the Play to Talk / Communicating Partners training was what we layered onto the Hanen training when we were in limbo on the waiting list for intensive autism therapy, and we both wanted to keep moving forward and also start building our relationship with Agency 2.

Here's the gist of the Communicating Partners program: strategies that seem simple, but each of them can be unpacked pretty far and take quite a bit of effort and practice to really internalize!

• Balance: Do and say about as much as the child does and says. Allow child time to participate.


• Match: Talk and act in ways that are possible for your child. Talk and act in ways your partner can and will want to try.


• Respond: Let your child see that you are paying attention to his feelings, actions and words.


• Share Control: Be sure each partner has impact on the other, each partner has some control but not total control.


• Play and Affirm: Let your child see that you enjoy and value him just as he is.

All this represents another layer of our days with Joy, and the principles according to which our House Blend baristas are trained as well.

Upcoming layers: Joy's therapy goals, and how her school-district therapists fit into all this too. And maybe some bunnies.