Monday Mum...Mum... NUMBERS. Dangit.

As a rule, I don't do memes (little games participated in by all the cool bloggy folk.) Then when I do give in and do them, I always seem to end up twisting the rules somehow. So here's this really neat meme started by Kia over at Good Enough Mama, wherein one posts on Monday using a numbers theme, and she calls it Monday Mum...mum... Dangit, I can't say it. Alliteration be blowed, I've got to call it Monday NUMbers. (Me, have a kid on the spectrum? As a matter of fact, yes, why do you ask?!) Look at the button-thingy above if you want to see the real name.

Anyway. Here goes.

1 = number of new Rose hula-hoop tricks this weekend (hoop goes from waist to neck back to waist again, spinning all the while).

2 = number of rhubarb pies I baked on Saturday.

2 = number of big handfuls that Joy grabbed out of the middle of the pie that was out on the counter Sunday morning.

1 = number of pies that I needed to take for Sunday dinner at GrampaK & GrammaJ's. Whew.

2 = number of items I took seconds of at the amazing wonderful Sunday dinner (wine & turkey; very restrained of me, I thought!)

4 = number of pounds I'd lost since I started trying but before the amazing wonderful Sunday dinner.

0 = number of times I've stepped on a scale since. Don't wanna know.

30 = number of miles I've run in March. So far.

10:08 = per-mile average pace on last Thursday's treadmill interval-training run.

3,465 = number of hairs Joy pulled out of My Little Pony manes this weekend.

10,872 = number of hairs Joy pulled out of her own head this weekend.

1 = number of resulting adorable haircuts (I missed my calling as a beautician, no?)

Teaching Hospital/ity

We live in a university town with a slew of medical education programs.

Our university-connected health care is attached to a "teaching hospital" and generally comes with observers and learners accompanying the doctors, particularly for pediatric stuff. Joy's neurologist generally comes through the exam-room door like a mama duck with three or four little ped-neurologists-in-training swimming in his wake!

Joy doesn't seem to have a problem with this. She likes people, on the whole, and doesn't fuss at new faces. And I'm happy to accommodate. The world needs more pediatric neurologists, etc., and how else will they learn? I suppose that in certain circumstances I'd refuse to let my kids or myself be "practiced" on, but that really hasn't come up yet. With Rose's broken arm last year, the cast was wrapped by a student, under the careful oversight of the experienced emergency-room doc. At one point I let a student start an IV on Joy. What better subject than a kiddo who demonstrates so little fear and has a high pain tolerance? (Though if she'd missed the stick, I'd have asked for the teacher to finish the job. She did fine.)

We've opened our house to students too. Again with a university in town, the local Birth-to-Three was a natural fit for having therapists-in-training who were looking to Joy's therapists as mentor. Some of them brought some really interesting ideas and approaches, and Joy never rejected a single student.

Recently Lynda the Wonder-Woman daycare lady hooked us up with a friend of hers who also runs a home daycare and who was taking a class on inclusion of special-needs kids. She needed a lot of hours of observing such a child, at daycare and home and in therapy, to meet class requirements. We took her grocery-shopping with our family, opened our home to her, let her observe Joy at Lynda's. The world surely needs more daycare providers who have what it takes to care for and teach children like Joy!

One of our intensive autism line therapists, our House Blend baristas, has a special training role in the Agency 2 organization. We opened Joy's sessions to one of her trainees earlier this year too, training for someone else's team. The trainee connected nicely with Joy, came for quite a few sessions, expressed regret that she wasn't going to be working with Joy.

And then at the beginning of March, we suddenly wound up with a big gap in our schedule where one of the baristas had been. We thought of the new trainee... and she leaped at the chance to join us! She's been doing a great job so far. We could have limped along for weeks while Agency 2 tried to hire someone new for us and then got that person trained up from scratch. As it was, we were up and humming with a full team again remarkably quickly.

Hospitality and teaching are good things.

Spectrum of Faith and Doubt

This Lenten season, our church has been doing a series called "The Spectrum of Faith and Doubt." Lots of reflection on the nature of faith, doubt, and the interaction and relationship between the two. For me the most powerful part of the series has been the short reflections every week by members of the congregation that fall into the confessional genre; as in, confessions of faith. And confessions of shattering struggles with doubt as well.

I was struck by something that was said last Sunday, questioning the use of spectrum imagery for faith and doubt. The imagery somehow implies that the two fall on opposite ends of some kind of Likert scale (e.g., 5=very good, 1=very bad) rather than the complex interaction and co-existence that is perhaps more common to most people's experience.

It reminds me of a similar pitfall in the use of spectrum imagery for autism, as if we could line people up "on the spectrum" in order of high-functioning to low-functioning, long wavelength to short wavelength, (very good to very bad?) Ummm. Not particularly helpful, to state it mildly.

Some challenges are surely more profound and disturbing than others. There have been some sobering stories echoing through the blogosphere lately. The perfect metaphor, both for autism and for faith, would capture that. Ultraviolet rays can cause skin cancer... look right into the sun too long and you'll burn out your retinas...

On the other hand, which color is the more beautiful, red or violet or something in between? What's the 5, what's the 1, and to what extent must it matter so much? Which person is less a valued and beloved child of God, the one in a place of confident faith or the one eaten to shreds by doubt? The "low-functioning" or "high-functioning" autist?

I think the beauty of the rainbow inherent in the spectrum imagery has a lot going for it, not least the symbolism of the rainbow in the book of Genesis:

And God said, "This is the sign of the covenant which I make between me and you and every living creature that is with you, for all future generations: I set my bow in the cloud, and it shall be a sign of the covenant between me and the earth." Genesis 9:12-13

Photo credit listentoreason under CreativeCommons license.

The Eyes Have It

We had a great big Agency 2 team meeting at our home the other evening, that really brought home the magnitude of the plate-spinning we (I) are doing on Joy's behalf these days.

There were 11 people at the table:

• 4 House Blend baristas (including a brand-new one, we've had a spot of turnover)
  
• the House Blend senior therapist
  
• the House Blend lead therapist
  
• the county case manager
  
• the school-district team leader
  
• Lynda from daycare
  
• JoyDad
  
• JoyMama

It was a fine meeting, lots of positive Joy-stories and a good opportunity to get on the same page with some things that we're doing with her PECS photos and such. We sent a plate of on-sale, store-bought cookies around the table. I couldn't believe how appreciative everyone was. I guess people are too overwhelmed or don't think to do those little hostess-y, favorite-place things for their wonderful therapists?

The next day, JoyDad gave me an extra hug and thank-you for all the coordination I do to keep this whole show moving. (That would be what Maddy recently referred to as "wrap-around services," I believe.)

Hug appreciated! It's a crazy edifice we've built here, especially when you consider that this still isn't EVERYONE who is on Joy's team. We were missing one barista who had a conflict with the meeting time, and Joy also has a speech therapist and an occupational therapist with the school district who weren't involved with this meeting. Then there's the team at church, where she has two Sunday-school teachers and TEN different volunteers (one for Sunday school and another for worship, a different pair every week of the month). One of those volunteers did the original recruiting and scheduling, which I appreciate deeply but which does not relieve me of the responsibility to let the right people know when we'll be missing a Sunday, for example. In a similar vein, the Senior therapist is in charge of scheduling the House Blend barista sessions, but I'm the one who has to pick up the phone and go scrambling if someone doesn't show up, not to mention making sure that either JoyDad or I will be in the house during the sessions!

And then there's the primary care pediatrician, and the pediatric neurologist, most excellent partners indeed.

And then any other specialists as needed...

Which brings me to our latest new wrinkle. JoyDad has been noticing for some time that Joy's eyes don't always seem to be tracking well together. I don't see it as much as he does (I think mostly I don't want to know, LA LA LA LA....) but eventually even I had to admit it. I did check informally with her neurologist to confirm that it didn't sound seizure-ish, but rather strabismus-ish.

Here's why I don't want to know. When Joy was diagnosed with linear nevus sebaceous syndrome (LNSS), we went through a round of specialist visits to check out some of the things associated with the syndrome. One of those "things" is ocular abnormalities. So we went to a pediatric opthalmologist in September 2007.

That eye-check visit was THE WORST clinic experience I've ever had with Joy. And this is a girl who has had 3 plastic surgeries under general anesthesia, a sedated MRI, a 4-hour video EEG, the list goes on and on. We'd arrived on time for the eye-check and ended up waiting for nearly an hour to see the doctor. The waiting room was crowded and noisy and under construction. We went through all the snacks and toys I'd brought along in the first 30 minutes. Then Joy had a seizure, if I'm remembering correctly, putting her in a foul foul mood. Then finally we got to see the doctor... for the FIRST time. Oh, hadn't anyone told us... they needed to dilate Joy's pupils. Please go back to the waiting room for another hour to give the drops time to work! I went back to reception and begged to be allowed to go home and come back, just a 5 minute drive. Well, OK, they finally agreed, but you have to be back in 45 minutes to be sure you don't miss the next round with the doctor. So we made it back in 45 minutes... and then waited ANOTHER 40 minutes, Joy with wide wide pupils and refusing to wear anything like sunglasses on her face. Joy and I were both basket cases by the time we saw the doctor again. The doctor was barely able to catch a quick peek into those poor sensory-overloaded dilated eyes, and in that quick peek didn't see anything worrisome.

Alas, strabismus is on the list of ocular abnormalities that can be part of LNSS. (And associated with autism too, I think maybe?)

So I dragged and dragged my feet about contacting Joy's pediatric office this time, but finally eventually did, telling my whole sad story about why I was really really hating the idea of an eye appointment. I didn't get to talk to the pediatrician himself, but nurse who called back told me that he'd recommended a pediatric opthalmologist who happened to be the same one we'd seen before. Not that I had anything against the doctor -- we really didn't get to interact with her much -- but she's still at the same clinic!! As my dear friend Mama Mara would say, GAAAAAH!

The nurse tried to talk me down. You just tell them your story, she said, tell them Joy's situation and that she CANNOT have another experience with those kind of waits in that kind of waiting room. If they give you any guff at all, talk to the clinic manager. Just don't take no for an answer. They'll take care of you if you escalate it properly.

Friday morning I heaved a big sigh and went to the phone. I spoke to a very nice appointment-desk lady who was very sympathetic. She put us in for a first-appointment-of-the-day so we'd get in quicker, with fewer people in the waiting room. If there's an exam room available that day, we can maybe wait there... while we wait for her eyes to dilate... no, ma'am, no way around that. This kind of appointment for this kind of concern, we've got to do the dilation. (GAAAH!)

She says she made all sorts of notes on our record, so we can have something to point to when the appointment actually comes around in July. I'll have to talk to whoever is in the clinic that day, though, about actually like getting them to honor any of this.

LA LA LA LA, I'm not going to think about this again till summer... unless you have some strabismus-related or waiting-room-related wisdom to share...

Isn't there a therapy schedule I can go coordinate somewhere, keep myself occupied?

Rose Rides a Bike

Living through winter in Wisconsin is kinda like deliberately banging your head against the wall because it feels so good when it stops. [Update: Check out this cartoon from the Sunday paper: I'm not the only one who feels this way!]

It's spring. And it feels GOOD.

I had a cranky whiny post all lined up to run this morning, but I can't do it. I'll post it Monday, which is supposed to be a rainy day anyway...

Today, I've got to write about Rose.

Unlike Joy, who is utterly fearless when it comes to flinging her body around, Rose has all too good an imagination about where excessive body-flinging might lead. This was exacerbated last spring when she fell and broke her arm on her very first trip to the roller rink.

She's been mighty cautious about bicycles.

We bought her a little bike with training wheels at a garage sale two springs ago. She was very hesitant at first. It took a lot of coaxing and support and a whole bunch of tumbles, but by fall 2007 she was riding quite well. I was hoping that 2008 would be the year to take the training wheels off.

No dice.

I actually did try taking the training wheels off at one point last year. Rose rode that way once, with me holding her up the whole time, and was terrified. Refused to touch the bike again until I put those wheels back on. Over the course of last year, as she grew and grew, she was outgrowing the bike to the point that even with the training wheels off, it wouldn't have been a good bet for learning to balance on her own.

Well, I posted at the end of October about just-in-time blessings, how a new right-size bike that wouldn't even take training wheels providentially came our way. That was the same post where I first announced, I think, that I was going to be doing the Couch-to-5K thing.

Of course we couldn't make any progress over the winter with the bike, but I managed to get to the point where a 5K run is now my regular workout. Yesterday was a gorgeous day, and my 5K in the morning was down to a 10:33/mile pace (with hills, and some wind!) After a day with lots of outside time, much lovely yardwork and such, Rose requested a bike-riding lesson for the evening.

There's a park near us that has an oval sidewalk of asphalt that runs around the lawn and playground area, nice and flat and perfect for toppling into the grass on either side when necessary. A red-helmeted Rose got onto the new big-girl bike with fear and trembling, insisting that mama hold her both by handlebars and waist. Around and around we went, lots of of stop-and-topples but no injuries. She got more confident, I let go the handlebar, was starting to have to trot to keep hold of her waist.

And then I let go for just a few seconds. And she balanced. And squealed with delight!

That was the turning point. Pretty soon I was just having to get her started, then letting go and jogging alongside (which I never could have done last fall before all that training...) Then she was making it all the way around the loop without stopping. Then she got up to a speed I couldn't match for very long.

By the end of the session she had succeeded in going THREE times around the loop in succession, without me at her side, only needing a bit of support at the start to get going.

[Update: We went out Sunday morning for another session. Rose went around the loop 26 times without stopping, and succeeded in starting herself without help a couple of times as well. I think she's ready to practice on our street next. Photo below!]


Kristina at Autism.change.org recently mentioned the concept of kairos, the "just moment," the "right time" when things come together in due measure. (The "just-in-time blessing" moment, perhaps?)

I think we've been there twice now this week, between trike and bike. And yes, Joy did do a little smidge of pedaling herself again yesterday.

Did I mention that I love springtime?

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?????

Elvis Rides A Trike

It's been a very spring-ish week. The yard is still soggy and even snowy in places, so we haven't let Joy out to muck around by there yet. Fortunately, though, we have a nice deck that catches the afternoon sun. Joy was out on the deck with her barista this afternoon, while I was inside concocting a delicious vegetarian lasagne with rainbow chard, frozen from last year's garden.

Suddenly I heard squeals cries of delight coming from the barista on the deck. "She's pedaling! She's pedaling!" As I came to the door, the barista demanded, "Has she ever pedaled the trike before?"

Well, no, not really. We've tried for several years now. I've duck-walked backward in front of the trike, holding her feet onto the pedals, and she'd go around a few times that way. She'd sit on the trike and propel herself with feet on the ground. But no, she'd never pedaled before.

"Oh, then you have to see this. Look, she was getting her feet onto the pedals and would keep them on when I pushed her... here, Joy, feet on the pedals... and then when I let her go, she kept on going... wait, Joy, can you put your feet back on? Oh, no. Well, she was doing it a minute ago!"

Heh. Elvis rides again.


By the way, this is an awesome little trike. It's a Kiddio by Kettler, cost us $40 new in 2005, not difficult to assemble, and still going strong.

Good Golly, Miss Molly

I'm feeling just a trifle bad about a little bit of grousing I did in the comments over at diary of a mom the other day.

Jess had written a post about a lovely experience at the American Girl Bistro in Boston, where they had a waitress who was magnificently ready-to-help about autism-related issues. (If only they'd known to ask her at the beginning of the meal!) The comments were singing the praises of the wholesome sturdy educational American Girl product line, especially in comparison to the likes of Barbie and her physically-impossible ilk.

Rose had just gone Barbie-shopping with some birthday money, and had gotten both a bikini-clad doll and a Barbie swimming pool with lifeguard chair & other accessories on sale for the price of ONE new American Girls outfit. My grouse compared the dolls to cheap junk-food calories (Barbie) vs. pricy organic fresh stuff (AG). Sometimes when you can't afford the latter, you're going to go with the former, and that's just the way it is. Grump, grouse, whine. And pass the ramen noodles.

Well. We got a phone call yesterday from Rose's school.

Weekend before last, her school had held their annual big PTA fundraiser carnival, and we had ponied up $10 for raffle tickets. We were told that we needn't be present to win, but if we did, they'd give us a call within 48 hours. Having heard nothing, we thought, "oh, well."

The call, from the secretary, said, "We were hoping you could find a time to pick up the American Girl stuff you won at the carnival. It's been sitting in the principal's office and he'd like to get it taken care of."

Ooo. American Girl stuff! We've never purchased anything American Girl ourselves, even though it's a (local) Wisconsin company. We'd read almost all of the books from the library, though. And we do have a Molly and a Kirsten and a bunch of clothes & accessories, most of it hand-me-down, an outfit or two came as gifts. I was thinking maybe we'd scored a new outfit or some such in the raffle, and so I walked to school with Rose this morning, Joy in the stroller, thinking to bag up the dolly-clothes and tote them home.

Nuh-uh. Here's what it was:


Molly's Stage and Screen. Plus Theatre Seats.

I had to come back with the car to load up the big box.

These are retired items, might have been "seconds" because some little add-ons were missing, like the stage lights and the popcorn that usually come with. But they're brand-spankin' new. What a gorgeous, generous donation. And what amazing raffle-y luck to win this for Rose!

I think that Rose's Barbies and Only Hearts dollies are going to love performing here, along with their bigger American Girl counterparts.

Maybe someday Joy will be able to do theatre pretend-play too. For now, we'll have to keep her from sitting on the chairs.

But anyway. I retract my whine! Long live American Girls!

Artwork

So I noticed this piece of Rose-artwork Scotch-taped to the back bedroom door:



I haven't discussed it with her. I suppose she's probably depicted herself as the one in the yellow dress with the hula hoop. Maybe those ponytails indicate she wants to fly like the birds? I don't know who the other two girls are supposed to be.

But I totally LOVE the fact that the one who's gettin' her flirt on with the only male in the picture... is the gal in the wheelchair!!

Summoning of the Snark: Wisconsin Edition

My snark of blogfriends went to Boston without me... but at least I got a T-shirt! Dear Mama Mara, who came over for coffee and brought me kringle and played with Joy the other day, also brought a surprise: a Look Me In The Eye T-shirt from the bloggy gathering with John Elder Robison in Boston last month. Woof!

Mama Mara wrote in her trip report after arriving home from Boston:

Sadly, I didn't get near enough time with [Rhemashope] of Autism in a Word, so I am going to have to insist that she come to my neck of the woods soon and visit with me and my (there-with-the-snark-in-spirit) neighbor, JoyMama.

I agree.

In fact, Mama Mara & I agree so much that:

We hereby summon the snark to Wisconsin this fall. Sometime October-ish.

Blogfriends, this is your chance for a midwestern meet-up! We'll schedule in the fall because it's usually quite pleasant and colorful-foliage-y around here at that time of year, and it doesn't conflict with the Southern California playdate that's already on the books for June.

If you would like to be in the loop for more information and date-decision-making, say so in the comments or drop an e-mail. This is an invite-yourself affair, m'dears. You don't have to be affiliated with the Boston or the So.Cal. gathering to do the Wisconsin one!

There'll be cowpies...!

Some Kids Go... When They Sit N' Spin

Back in the 1970s or so, there was this really catchy TV ad that went with this really cool toy: the Sit N' Spin! Ingeniously simple, the toy consisted of a stationary spindle in the middle, a wheel on top of the spindle for the kid to grab, and a rotate-able platter at the bottom of the spindle for the kid to sit on. Sit on the platter, grab the spindle, pull yourself around, make yourself so dizzy you puke! The ad went like this:

Some kids go [sound effect: wheeee!] when they Sit N' Spin,
Some kids go [sound effect: honk! honk!] when they Sit N' Spin...

Well, Joy has a modern version of this venerable toy. It has a purple oval instead of a circle for a platter, a big picture of Dora the Explorer on the spindle-wheel, and a way-noisy Dora soundtrack.

Joy loves it.

Here's how it looked this morning:


Some kids go


When they Sit N' Spin,

Some kids go


When they Sit N' Spin,

Some kids go


When they Sit N' Spin,

Some kids go



Some kids go



Some kids go


When they Sit N' Spin!


Funny enough, one of the squats during all that sitting n' spinning resulted in a full diaper. I guess some kids really do go when they Sit N' Spin!

Growing Girls

Both Joy and Rose are making transitions from one clothing size to another.

Of course, it would happen simultaneously. And it would happen right when the stores have finished selling off their winter clearance and have barrelled all the way into summer. Shorts! Swimsuits! Beach wear!

Does nobody realize that we're supposed to have a low temperature of FOUR DEGREES here on Thursday?! (And yes, that would be Fahrenheit.)

Fortunately, I have two girls. So I have a nice stash of hand-me-downs from Rose to Joy. Joy doesn't mind a whit. Rose doesn't mind secondhand goodies either, perhaps having absorbed my delight in thrift-store shopping. It's cheap, it's eco-friendly, it supports good causes, what's not to like? It also beats new-clothing shopping in another way. One of my favorite Rose-clothes stores, Kohl's, has the cutest girl-stuff in their little girls department, sizes 4-6x. Except that Rose is now a size 7, so she moves over into their big girl department, sizes 7-16.

I will NOT dress my 7-year-old like a teenager. Give me thrift-store selection any day.

Anyone got any favorite not-too-expensive stores for that in-between girl stage, beyond little-girl but not yet tween/teen?

Meanwhile, the most definitive up-sizing for Joy was with her footie-jammies. The 4T's were getting snug on her, which was just as cute as could be. I love putting her in footie-jammies because they've got that long zipper all the way up the leg, and she can close that zipper the whole length by herself.

Unfortunately, she'd been doing a lot of unzipping too during her middle-of-the-night wakeful hours. We'd been finding her in the mornings with her feet still in the footies, but the rest of the jammie all unzipped in a heap around those footies.

So we moved her up to Rose's old 5T footie-jammies, which fit surprisingly well.

Even more surprising? The night-time unzipping stopped.

Clever, growing girl. She was trying to tell us that she was too big for her jammies!

Out and About

Friday was a beautiful day. Well, by Wisconsin-in-March standards, anyway. The sun shone bright all day, the temperature climbed to 55 degrees, the streets were full of snow-melt rivulets.

I was fortunate enough to be off work taking care of Joy, due to a vacation day at the daycare.

First thing that Joy and I did was walk Rose to school, wheeling along with the jogging stroller. Then we kept going, making the walk over an hour long altogether. So lovely to be out with the sun on our faces!

Then after a therapy session, we went out again, this time to an open-gym session for the five-and-under set at a local gymnastics place. They have a glorious huge gym all full of trampolines and big squishy mats and ropes and a crash pit and a carnival-sized bouncy castle and a 3-story play structure like the kind at McDonalds Playplaces (only bigger). Joy and I haven't had many opportunities to hit this place in the past year, but between therapist illness and daycare vacation, we were able to go once the other week and then again for this Friday visit.

Joy had a blast. I loved seeing how much she learned from the first visit to the next. One particular example was the bouncy castle, which had a ramp kind of thing you could climb when you wanted to go up to the slide and then exit. Her first time in the castle the other week, I had to climb in with her to nudge her up to the slide. Then her other two forays into the castle that visit, I was able to stand outside the castle and call her over to the ramp, and she'd climb up. On Friday, I was able to call her to the ramp right away. Then by the end of our visit, she actually went up the ramp with no input from me at all!

And then she napped after lunch. Ahhh....

And then in the afternoon, we went to the zoo! We're lucky to have a pretty decent zoo in town, with the added advantage that admission is free. Quite a few animals are off the displays in the winter, but there were plenty left to enjoy. The penguins were in fine form, and the polar bear, and the otters. My favorite, though (and I think Joy was at least watching them somewhat too) were the prairie dogs. They were doing this funny thing where every minute or two, one of them would stand up on its hind legs and scream "Wheeeek!" It would be answered by similar salutes from other prairie dogs: "Wheeeek!" Almost as entertaining as the prairie dogs were a group of college kids watching the prairie dogs. Every time the "Wheeek!" thing happened, the observers also threw their hands into the air and hollered "Opaa!"

And then we picked up Rose from her after-school program, and when we got home, we found snowdrops blooming on the south side of the house.

Spring is coming. Even though it has rained pretty much all weekend so far and will probably snow before the afternoon is out.

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.

Not What I Had In Mind

So this has been a sleep-deprived week at the Joy household. I wrote about the ridiculous lack of sleep over the church retreat weekend, starting with Rose waking me at 4am Saturday with a tooth that had fallen out, then 20 straight hours awake partying at the retreat, then 2 1/2 hours of sleep and not much more than dozing the rest of Saturday night...

Catching up from that big deprivation wasn't going well. Joy did a lot of night wakings this past week, of the kind in which she wakes at 2:30 or 3am and starts enjoying herself in the crib, with loud comments. Sometimes she'll snooze again at 5am, sometimes she just stays awake. And then she doesn't nap! As you can imagine, the big people have a hard time sleeping through this too.

Finally on Friday night I had a good solid 8-hour night. It would have been longer (Joy slept till we woke her at 7am, eleven hours!) but I had bell practice all morning and we needed to get a week's worth of groceries before I left.

Oh, how I was hoping for a solid night last night, to consolidate my rest and make the world right!

But Rose came to my bedside at 2:30. "My tummy doesn't feel good." I staggered out of bed, gave her some simethicone, and sent her back to her room. Ten minutes later, she was back. "I threw up all over my bed," she reported.

Aughh. Got her moved onto the couch with a barf bucket, stripped her bed, started the laundry... and woke up Joy. Who didn't go back to sleep. But that was the least of the worries.

Rose, wide awake, wanted a video. So we curled up on the couch to watch, and she then started heaving at intervals of 10 or 15 minutes. I lost count of how many trips I made to dump the bucket.

Eventually she was tired enough to sleep, thought the barfing was done, go to bed Mommy, I'll stay on the couch. So I gratefully hauled back to bed, about 4am this was. Ten minutes later, she's at my side. She'd whoopsed again, and without my help she didn't get the bucket in time. So now I have another load of laundry to do, and I'm back out to the living room. To lie down on the floor, since Rose is now using the whole couch. She was so tired she actually did nap, but the ten-minute intervals continued, with me on duty listening for the gagging since she couldn't position the bucket in her sleep.

Finally JoyDad got up after 5 sometime. I put him on bucket duty and wearily crawled away to bed. I did get to "sleep in" at that point. And the last bucket, that I dumped just as he was getting up, was (wonder of wonders!) the last retch. He didn't have to oversee a single one. Lucky, lucky dude.

Despite a few hours of morning sleep, I don't feel much rested.

This was not what I had in mind.

UPDATE: Well, just when I get a good self-indulgent whine on, I read something that makes me count my blessings. Prayers for Nik and his mama over at Maternal Instincts. They're having a rough time right now, and sleep deprivation is just part of it.