Hope for the Next Generation

Time magazine asks on its cover this week:
"Is America Islamophobic?"

Rose: What's that word? Is... is...

JoyMama: Islamophobic.

Rose: What does that mean?

JoyMama: It means being afraid of Muslims.

Rose: Why? They're just people!


In appreciation of one of Joy's recent baristas, and of Rose's first daycare lady. We've so appreciated their presence in our lives, and wish them grace and courage in the face of others' fears.

To Cancel a Thursday

Fortunately, we didn't have to cancel a thing yesterday - happy first day of October, and all.

Last week was a different story.

Mid-way through her evening therapy session last Wednesday, poor Joy suddenly began to empty the contents of her stomach onto the dining room floor. I could not believe that one little body could hold so much! We ended the session, bathed the girl, started the laundry, and then had two more rounds of heaving as the evening went on. She slept through the night, but there was no way that we were going to be able to go with the Thursday as planned. JoyDad & I were both scheduled to work, but decided to split the day at home to take care of Joy.

So who did we need to contact?

1) Lynda, Joy's regular daycare lady, to let her know of the incident and ask if Joy was the only one. (She wasn't - the bug had been going 'round the daycare, but at least we learned that the barfing was short-lived and the recovery was only about a day.)

2) The babysitter for the day, the new one we've hired to come into our home on Thursdays to supervise the Thursday therapies, thus shaking loose the hours I need to do my LEND leadership training program this semester.

3) Four regular baristas (therapists), plus a supervisor and a trainee.

4) The neighbor who walks Rose home from school, to let her know to call our home number and not try the babysitter's cell if they decided to play at the park on the way home.

5) My workplace.

6) JoyDad's workplace.

7) The evening babysitter - who actually got to us first because she wasn't feeling well herself! I had been planning to get out for a rare chance to see a show in which JoyDad's band was opening for another act. (Dagnabbit).

8) The wife of the singer in the band, whom I was going to pick up on the way to the gig.

OK, by my count, that's 13 notifications.

We're blessed to have that many people involved in our lives, and Joy's, and Rose's.

But... mercy.

Fortunately Joy recovered swiftly, as expected. None of the rest of us have shown any signs, and now that a week has passed, we're expecting that we're good to go. Which is helpful, because we're off to the northwoods for the weekend, starting early Saturday morning.

See you afterwards!

Knows Who She Likes

A guest post from Lynda, the daycare Wonder Woman! (It's an excerpt from yesterday's daily report.)

Joy was a real climber today. But not on her usual pieces of furniture. She kept climbing onto the computer chair at the desk and trying to get up on the desk. I finally had to take the chair out of the room because I couldn't get her distracted from it. She seemed to be going after Jackie Chan! I have a Got Milk poster of Jackie above the computer. She was totally focused on that when she was climbing. Maybe I should experiment with taking the poster down and putting it lower so she can reach it.

Joy's first celebrity crush perhaps?????

Updates and Downdates

Doesn't it always seem to be a bit of cognitive dissonance when an "economic UPdate" comes on the TV or whatever, and then the news is all about how things are spiraling DOWN?

Anyway. We've got both ups and downs here, so we got both updates and downdates.

UPDATE: Rose is feeling much better. She went to school on Monday, only a little worse for the wear (achy muscles from all the hurling). Cute Rose story from yesterday: we were in the car on the way home from piano lesson and she asked me, "Did men always used to have to have short haircuts?" I started an answer about how it wasn't that you had to have short hair, it was just...

"Tradition!" she supplied from the back seat. I chuckled and told her what a grown-up girl she was, that that was exactly the right word.

"Yep," she replied smugly. "I'm a human dictionary!"

That's my girl! A chip off the ol' OED!

UPDATE: Joy's "more" sign has persisted this week. She's not using it at every opportunity, but we're still seeing it occasionally. She also seems to have retrieved her old sign for "all-done," which consists of self-applause. Which makes sense, because what do people do when you finish an achievement? They applaud and praise you! She used it remarkably well at Tuesday lunch, when I was around the corner as she finished the food she wanted to eat. I heard the clapping and came running, and she was absolutely telling me she wanted to be done. And then I told her that she needed to eat a few more bites of ham before I'd let her get away with being "all-done." Heh. Little stinker.

DOWNDATE: Sigh. This one harkens back to my Rules post the other week, in which I ranted about the ridiculous conditions and hoops to jump through to get 3 months worth of House Blend therapy (at 4 hours per week) at our fabulous daycare. Our daycare lady, Lynda the Wonder Woman, provides just an ideal setting for therapist work, and is a full member of our team. The daycare setting provides Joy with the opportunity to work on generalizing goals that she's been working on at home, into her "home-away-from-home" setting where she gets to interact with more peers.

Well. The response came back last week.

They said that in the next 90 days, we could have FOUR of our 4-hour therapy weeks. We're to sprinkle them throughout the 3 months as we see fit, but the emphasis should be on training Lynda so that we can fade out the need to have the therapy at the daycare at all.

This is not a decision made with Joy in mind, or with any clinical basis in the situation. This is a bean-counter decision, made in service of an apparent crackdown on therapy hours outside of the home in general.

ALL kids need structure, and stability, and routine. Kids on the spectrum have an even greater need for structure, and stability, and routine.

So, let's jazz things up at daycare, shall we, with 4 hours of therapy in week 2 of twelve, and then we'll take two weeks off, and then we'll have another week with 4 hours of therapy, and then we'll take three weeks off...

You see what I mean. That kind of approach isn't particularly kind to barista-schedules either, might I add.

It looks like our only sensible option is to take all four weeks consecutively, starting next week. And then we're out. No more therapy at daycare. No further venue of appeal, other than the committee that handed down the decision to begin with.

Well, our particular case might not be appeal-able, according to the rules that are apparently being re-written and tightened as the months go by. But when the rules are THAT BAD, maybe someone needs to do something to get those rules changed in the right direction....

Will keep you posted. If I need help, I'll let you know that too. Not quite sure what form this will take yet.

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.

More Daycare Awesomeness

Alas, we missed the daycare holiday party again this year, as we've done for several years straight, due both to bells and therapy.

But Lynda (the Wonder-Woman Daycare Lady) came through for Joy anyway.

Not only did the kids get holiday gifts from daycare...


Look at Joy's personalized gift bag!

What utter awesomeness. Thank you, Lynda!

Break Out the Fizzy Juice!

Last night we held a small celebration, marked with butterscotch pudding and raspberry-apple fizzy juice (the kind that uses a plastic arch over the bottle cap to make it look like a champagne cork).

Yesterday officially marks a full month since Joy's last big seizure!

We came so close, several times. We almost got to a seizure-free month as April became May, but then had a whopping 7-seizure day to end that happy string. Then we almost made it through August, but not quite.

We almost could have counted September, because the last big seizure that actually interrupted her day was August 31. But then we heard her seizing in her crib after she went to sleep for the night on September 11.

This time, though, it's really official.

We baked cupcakes this morning, to take to daycare tomorrow. (When did cake-mixes boxes stop including instructions for how many strokes to beat by hand?) Rose cracked the eggs and laid out the cupcake holders in the tins, and Joy did a bit of stirring.

I should note that we're quite sure Joy continues to have ongoing subclinical seizures pretty much all the time. This doesn't mean the seizures have gone away, by any means.

Still, it is absolutely fantastic to have had an entire month in which her days have not been interrupted by the big blue-lipper kind of seizure. Actually, that's been more like a month and a half, since the September 11 one was in her sleep.

Woohoo! Anyone for two months?

In Praise of Awesome Daycare

I've mentioned Joy's daycare before, and officially dubbed her daycare provider "Lynda," after Lynda Carter of Wonder Woman fame. Today I'd like to let you know why we, and Joy, are so incredibly blessed in her daycare situation.

I work a part-time schedule. For the first two years of Joy's life, we had a daycare-swap arrangement with another family from church, who had a little guy only two days older than Joy. But after two years of swapping, the other family was looking to reproduce again and found another arrangement that would better suit an expanding family, so we needed to find something else. By that point, we were well aware that Joy was "behind" developmentally, and she'd been getting Birth-to-Three services for several months. We knew that we'd need something special, and we found it from a personal referral from a Birth-to-Three therapist, who had heard about what Lynda had put together in her home.

Lynda mixes things up with her daycare kids in two ways. She deliberately assembles a mixed-age group of children, regularly taking in new babies who then grow into years-long clients! And she deliberately puts together a mix of special-needs and neurotypical kids. Right now the mix is about half and half.

This daycare is a model of inclusion on a day-to-day basis, and she makes it look so easy. It really hit me the other summer one time when I dropped Joy off late and everyone was already out in the front yard, playing in a little wading pool. Lynda had the one girl with the most intense challenges (non-verbal, not very mobile, among other things) sitting on the bench of a little picnic table pulled up to the edge of the pool, with her feet in the water. Lynda was playfully pouring water over this girl's legs and feet, to a response of big smiles, while simultaneously tracking and interacting in turn with the other kids around the pool and in and out of the water, and managed to seamlessly welcome me and Joy as we arrived.

Lynda's place is therapy-central some days, with itinerant therapists from Birth-to-Three and the school district in and out to work with their various kiddie-clients. Joy's summer speech therapist was only there once this summer, working mostly out of our home, but her response to just one session at Lynda's was "This place is therapy heaven!" Lynda is eager to learn from the therapists and also make suggestions -- she's not a therapist by background, but has practically made herself into one by observation and continuing education.

Oh, and did I mention the reports? Every day during nap-time, Lynda writes up three or four paragraphs on each kid, with detailed specifics on their activities. Most days those messages are e-mailed to a private online group we have set up for Joy-reports, so JoyDad and I get to see them at work (only on the busiest days do they get handwritten). We've got the school-district therapists turning in their reports that way too, and Lynda's are easily the equal of theirs.

To top it all off, this week Lynda let me trade Joy-days because of vacation and holiday. I ended up having a day at home all to myself, though I did share it with JoyDad, swooped down on his workplace and whisked him off to a restaurant lunch.

Yes, she does read this blog -- thanks so VERY much, Lynda / Wonder Woman!