Similarities (Row, Row edition)

Three years ago, I wrote a post titled Similarities.  The post listed a whole string of commonalities with a sweet young lady in Massachusetts and her family, whom we've never met except in the blogosphere.  But I know of no other child who is more like Joy than Rhema.

In September 2009, the post was about their shared love of window dancing.

Yesterday, I got chills when I found the following clip on the Rhema-blog, Autism in a Word.




If you close your eyes and just listen -- might have to turn the volume up a little, it's a phone-video -- this could be me and Joy.  We do exactly the same thing with songs, where Joy fills in the blank.  Row, Row is one of our favorites.  Joy requests it by grabbing an adult's hands, swaying, and crooning "Whoa, whoa."

Even that might not have been enough to nudge me to write this post.  But then I opened Joy's backpack when she got home from school, and I found these.

"Row, Row" pictures

Joy's been hard at work in art class again.  Two weeks ago, she made her first Song Spots art, dotting with a Magic Marker in time to music.  Last week, she used a paintbrush and dotted in time to "C is for Cookie."

This week, she worked in two different media, paint and crayons, producing the artworks above.  She had a different aide for yesterday's class, who didn't know "C is for Cookie" (Joy's first request) but they quickly settled on a different song.  The artwork for October 5 is brought to you in time with Rhema's song:  Row, row, row your boat.

One year, some time, some how, these girls must meet.  And their mamas, and their sisters -- we could even bring the dads along, if everyone's in the same country at the same time!  I wonder if Rhema and Joy would recognize the kinship that's so spine-tinglingly evident to their blogging-mamas?

I think they might.  Especially if there are windows to dance in, and familiar songs with just the right blanks to fill in.

Music and Speech

We got our piano tuned the other week.  Rose has been making great strides with her piano lessons, making the instrument sing each morning with her practicing -- so we wanted to be sure it was singing in key!  (Didja hear the one about how people keep having to break into song because they can't find the key?  Heh.)

Anyway, the guy who did the turning also plays a variety of instruments but is particularly skilled with the marimba.  He's won numerous awards, plays from a repertoire of over 250 songs, and has performed in Wisconsin's Capitol Rotunda.

He also has autism, and didn't speak until he was eleven.  Now, in his mid-thirties, his list of accomplishments is long.  In his work as a piano tuner, he is accompanied by his mentor, a retired piano tech who supervises his work and helps him stay focused.  His mom, who manages his scheduling, also taught him at home.  By the time we'd completed the whole transaction, I wound up with two of their CDs -- one of his performances, one of her compositions.

Mom's songs, as it turned out, were integral to his education.  Twenty-some years ago, public schools were open to students with disabilities thanks to the 1975 "Education for All Handicapped Children Act" (predecessor to IDEA) -- but in his case at least, they weren't very successful at figuring out how to serve him.  His mother was a kindergarten teacher, and she discovered that what he best responded to was music; that if you sang his lessons to him, the material would actually stick.  So her CD features the songs of his education, created as she put together a music-laced curriculum for him.

Joy, meanwhile, has gotten off to a fine start this school year.  I was concerned that the transition back into school, with a mostly new-to-her team and coming off a late-summer riddled with behavioral challenges, was going to be rocky at best.  But her new special-educator and teacher and student-teacher met with us repeatedly in August, processed the mounds of input we had for them, and felt like partners in the education of Joy before classes even started.

On top of that, Joy has been blessed with musical SEAs (special education assistants).  The past two years, she was met first thing every morning by an SEA who plays drums and teaches piano.  We were sorry to leave that aide behind as Joy moved up to 2nd grade, but simply delighted to hear her new morning-greeter SEA announce, "I'm a singer!"  Joy's affinity for melody and tempo was quickly evident to this new SEA.  We've been hearing updates about Joy echoing little tunes and tapping rhythms.

Then on Friday, she sent home this piece of artwork.

"Song Spots"

Joy, who had never made it all the way through art class before as far as I knew, hung in for a full 45 minutes with her singer-SEA on Friday and dotted this sheet in one marker-color after another -- in time to music.  It sounds like her art teacher got into the act with the music as well.  I know he plays the bass, and the note said "Teacher plays quiet jazz too!"

Teachers have been badly scapegoated lately in Wisconsin and nationwide, and SEAs are even further down the totem pole.  As a Madison teacher-blogger posted just yesterday:

SEAs choose to stay in a career where they are often sworn at, kicked and challenged. They do this, because they care about our children and they understand the importance of their role in our students’ lives. We need to start rewarding SEAs both financially and by treating them with the professionalism they deserve.  Most importantly, we must create school conditions that foster success for the students they serve.

Indeed.

In tandem with the new music delights, we've had a burst of words these past weeks as well.  The speech-settings on Joy's mixer-board are hitting new highs.  I now regularly hear at snack-time, when Joy finishes the first serving of goldfish -- "moh... CACK-uh!"  Not too long ago, when Joy was angling for her iPad (which was busy charging up on the other side of the bedroom door), we got a three-word prompted utterance out of her: "I... want... iPad"!  Heck, just yesterday JoyDad was watching football with her, and was teaching her to raise her arms and say "Touchdown"!  (Next on the list of sports-speak to teach her will be "Go Bears!")

Music to our ears.

And yet, while all this wonderful music and speech and overlap between the two is happening on the home front, down at Wisconsin's Capitol, a new Chief of Capitol Police has been tasked with squelching musical free speech in the Capitol Rotunda.

I've blogged about the Solidarity Sing Along before: red heart balloons, and holiday defiance in the face of an attempted December crackdown last year.  Since March of 2011, the Sing Along has gathered daily to continue expressing opposition to the ongoing depredations of the Walker administration.  This remarkable resistance-movement has been a thorn in the side of the Republican regime since the singing first began.  They tried to squelch us last December with a ridiculous, unconstitutional re-interpretation of Capitol permitting rules, flying in the face of the Rotunda's rich history of being a public square, intentionally designed with acoustics suitable for free political expression.  We showed up by the hundreds in December, daring them to arrest us all -- and, in large part due to the thoughtful leadership of the previous Capitol police chief, no arrests were made and the Sing Along continued.

Now, however, the arrests have begun.  Chief David Erwin, a former Scott Walker bodyguard, has led the Capitol Police in an anti-singer campaign.  The arrests and citations have targeted the people who attend the Sing Along most frequently.  While Erwin gives interviews complaining about disruptive protesters who go around "terrorizing" tourists and Capitol staff, the arrests are for holding signs.  Or banners (like the one held by JoyMama the rabble-rouser in the red coat below).  Or for attending an unpermitted event, or for sections of the Administrative Code that have never been interpreted in this way before. Despite repeated requests for clarification, the Capitol Police are declining to specify what activities might be deemed citation-worthy on any particular day.  They've taken to showing up at people's homes and workplaces to deliver citations, without having approached the individuals at the Capitol at the time of the supposed infraction.  It's intimidation, and they're pairing it with a cynical propaganda campaign that Rebecca Kemble wrote about compellingly in The Progressive the other week: The Two-Pronged Assault on Dissent in Wisconsin's Capitol.

The citizen-lobbyists of the Solidarity Sing Along believe that our permit to lift our voices in musical dissent is contained in the following words of Wisconsin's Constitution (Article 1, Section 4):

The right of the people peaceably to assemble, to consult for the common good, and to petition the government, or any department thereof, shall never be abridged.

"What part of SHALL NEVER BE ABRIDGED don't you understand?"

And if we poke a little bit of fun at Chief Erwin with masks and signs, that too is free speech, a bit of political theatre to bring home our message.  We gather and sing in peace, but we are determined.  We intend to keep singing until Wisconsin is back on the right track.  Even then, we will continue to be involved on a new level.

There's too much at stake -- and my Joy, who delights in rhythm and song, is at the heart of the future I'm fighting for.

See you at the Capitol.

Celebrating Independence

A little over a year ago, I wrote about Joy's new sturdy big-girl tricycle that she got for a birthday present. She wasn't immediately impressed with it, but once she got to school, they were using the same kind of trike and she learned to trike up and down the halls like crazy! We're continuing to practice at home:

Our street is quiet enough that she can ride on the street as well as the driveway, though it's good to have another person nearby.

Rose doesn't want to be left out of the fun either, though her recent new inches have made it more challenging to fit herself onto Joy's trike:

Speaking of sizing, I pulled out Rose's old training-wheels bike just to give it a try. Joy's too big for it! We tried just a little bit, and she at least stayed upright, but she kept wanting to stretch her feet forward to the front wheel where the pedals SHOULD be, and also wanting to press the pedals backwards (which on the bike activates the braking function, but on the trike puts you into reverse.) I'll see if I can adjust the seat and handlebars for our next try, but I'm thinking we're going to need a larger training-wheels bike to make this work.

Meanwhile, we're having a long, summer-y weekend here. Real-live fireworks aren't on the agenda, since they're so very late in the evening and so very noisy besides. But Rose has come up with a substitute:

and a message for anyone who comes by:

Keeping Busy

Lots of busy, so far this summer.

Rose decided that she rather liked the sidewalk-chalk activities from our trip to the Capitol the other week. Since we haven't taken the opportunity to do any more political work downtown since then, she brought the sidewalk chalk to our own neighborhood, creating a collaborative mural all over the driveway apron that we share with a couple other homes.

She didn't just draw it all herself, though. No, she invited the neighborhood in, with chalked-invitations all the way up the street:

She drew blank boxes for others to fill in, drew a snowman for others to add features to, solicited responses to little jokes. Then she left chalk out to see what would happen... and people came! We saw several adults stop and add their doodles on their way down to the restaurant or local grocery. There aren't many children in our neighborhood, but we got enthusaistic participation from several of the kids nearby.

Joy, meanwhile, continues to busily request our involvement in little interactive games too -- such as peek-a-boo.

Like the new cut? I get better at the boyish cut every time I do it, though Joy isn't really fond of getting it done and makes the activity a challenge. I pretty much had to do it, though, and here's why:

Again. Dangit.

Yes, she's been busy once again, stimmy-pulling out her own hair, mostly along the line of her nevus-scar.

I didn't want to take it all the way down to a bald-buzz this time. But I may have to yet. She's still working on trying to pull the stubby little hairs that she's got left.

At least it's summer. Her scalp may get too much sun, but it won't be cold.

Break!

There's some wonderful stuff going on with Joy, beyond the birthday party and swimming I talked about in the last post.

I haven't yet told you about the birthday card she decorated for her classmate. Poor Joy has not had a happy relationship with writing-utensils over the years. We keep trying to get her to make marks on paper, and she would rather do anything else -- crumpling the paper ranks much higher on her preference list than drawing on it. Even so, I've made her "sign" every card that's gone out under her name or from the family, usually a hand-over-hand mark made under protest.

But they've been working at school with drawing-on-paper. And look what she produced when I put marker in hand and held down the birthday card for her to "sign":

All I did was hold the paper down. She did the spirals herself, no hand-over-hand involved except to help get the marker-cap back on.

But wait, there's more.

In our computer-bookmarks for years has been a fun baby-game site called Kneebouncers. The games are super-easy and work by just clicking on the screen or hitting any key. Unfortunately they recently went to a paid-subscription model, but there are still a couple of freebies, and we made a great breakthrough with one of those this weekend. The game is called Peek-a-bouncer, and to make it work, you have to click-and-hold (or push any key and hold). Then the curtains slide open and you see a funny face and a voice intones "peek-a-boo!"

Joy always tended to get frustrated with this game, because with the other games, all she had to do was a quick click to make things happen. In Peek-a-bouncer, if you just quick-click, the curtains barely budge and the voice gets cut off.

But on Sunday, after much hand-over-hand play, where I'd help her hold the mouse-button and I'd say the words "push-and-hold!" in the same tone as the "peek-a-boo!" -- she actually began to push-and-hold on her own. Experimenting with how much hold it took to create how much effect.

Oh, my goodness.

And then!

Last night Joy's newest barista (autism line-therapist) got Joy to turn a difficult evening around quite dramatically. Joy had been having a rough time, didn't want to be in any of our standard rooms, the barista was trying all the favorite stuff to no avail. They were working in Joy's bedroom when the barista as a last-ditch effort thought to ask her: "Break?" And Joy understood immediately, and dived on her own into her bed-tent, where she immediately set to work on putting herself back together. Over the course of 5 minutes in the tent, Joy stimmed herself from angrily-overwrought into pleasant-mood. The rest of the session then took place in pleasant-mood mode.

This is something we're going to USE. Again: Oh, my goodness.

[Bet you thought from the title of this post that JoyMama was going to be taking a bloggy break. Heh. Not a chance. You're stuck with me.]

Paradise

Rose decorated our front step with chalk on Tuesday after dinner.

Welcome to a house filled with fun!
Paradise at home

When I saw it, my first reaction was to think "Girl-child, have you forgotten how you and I were yanging at each other this morning over piano practice and homework?" You-just-don't-GET-it(sigh/eyeroll) vs. that-is-not-a-respectful-way-to-talk-to-your-mother, etc. Pre-teen fulminations from an 8-year-old mouth, impatient mama, eventually near-tears on both sides, this was not Garden of Eden stuff.

Then I realized -- she hadn't forgotten in the slightest. The sidewalk decoration was an oblique kiss-and-make-up.

I love you too, sweetheart!

Spring Bouquet

Photo by JoyMama.

Bouquet, and vase, by Rose.

Flowers by the Creator, by way of the JoyFamily backyard.

But Wait, There's More...

More emergings, that is.

Joy has become much more attuned to greetings and goodbyes. The high-five came about in the fall, I believe, and has been a lovely hook upon which to hang interaction at Sunday school and kindergarten practice. What's new, though, is a level of engagement and interaction, plus new signals. Joy has re-learned the bye-bye wave! And she also does a fun new greeting, where she gives a huge grin and stretches out a pointer finger. Sort of like in the movie E.T., if I'm not dating myself too badly here!

Another re-emergence is the "Clap, clap, uh-oh!" game. I don't remember when we first invented this -- I think it was a couple of years ago. It's a two-person game, facing each other, Person 1 is set to clap their hands and Person 2's hands are on the outside. Person 2 "makes" Person 1 clap hands, several times in a row. The soundtrack is "Clap... clap... clap..." and then Person 2 makes Person 1's hands miss and cross instead of clapping, and the vocalization is a big giggly "UH-OH!" Joy is not only willing to play the game again, she can be either Person 1 or 2. And she is willing to supply the "uh-oh" herself more often than not. AND, on Sunday when I was on nursery duty at church with her, I caught her in a quiet moment playing the game with herself. And she did the motions and said "cah, cah, uh-oh!" All on her own.

She's getting good at opening the car door from the outside and getting all the way in, with our Honda Fit at least.

She's mastering the "flip trick" for putting on her coat.

This morning she was playing in the kiddie area at the carshop while we were getting an oil change, and her shoe came off. This is a girl who, when her boot pulls off in the snow, can walk for several steps before anyone notices that the boot has gone... she not only noticed the shoe right away, but picked it up, then on voice-prompt brought it over to me. And as we were putting in on, she said "ahhhhn" (a nasal-sounding, French-like pronunciation that had an implied "n" rather than an American "n" but still!)

And just so as not to ignore Miss Rose, who is doing some pretty amazing things herself: she drew a picture last October for a contest at Ask magazine, where they were supposed to submit ideas to scare monsters away. Her submission was selected and published in the March issue!

Her caption: "This monster has electric snakes coming out of his head. He will scare ghouls out of their pants!"

Boo!

Artifact from Another Era, Take 2

I mentioned a few posts ago that we had visited my mother's mother, my magnificent 100 year old grandmother, at Thanksgiving. It was an end-of-an-era kind of occasion, in that we helped with the packing to move from the retirement apartment, where she'd lived with my late grandfather for more than half my life, into a smaller assisted-living apartment.

Of course, when you make a move like that, there's lots of downsizing to be done. We helped with that too, sorting things to give away, things to discard, things to keep. In addition to the books and family photos that I knew were going to be coming home with us, we also provided a home for various keepsakes, usable kitchenware (we've already made jello from her cupboard in her casserole dish!) and other odds and ends.

Grandma has always been good at saving pretty paper things to use in making Valentines and decorations. We brought home several packets of long-saved paper doilies for art-projects at our place.

It wasn't until we got home that I got a peek at the back of one of those doily-packets. These weren't just ANY old paper doilies, let me tell you. No, these were Roylies. And they have astonishing super powers...


Here's the text, if you don't want to burn out your eyes looking too closely at the image on the screen:

Nothing wins a man more than feminine fastidiousness! Famous movie actors, writers, artists, bankers and bon vivants have oft said when interviewed that good grooming in a woman is far more important than good looks. And the pampered male is quite as particular about fastidiousness in his lady's habits as in her habit!

Next time your best beau (or your husband's boss, for that matter) comes to dinner, let lovely Roylies enhance your feminine graces. Slip a dainty Roylie under the cocktail glass or tomato bisque. Frame that layer cake you baked specially for the occasion in a large round Roylie. It will look twice as beautiful!

The most inaccessible bachelor in town is bound to melt under the appealing influence of feminine daintiness done in the Roylie manner. Roylies are such a help in so many ways, there's no reason why they shouldn't help you get your man!

Hey JoyDad? Sorry I didn't have the Roylies thing going on when we met. But you married me anyway. Next time your boss comes to dinner, though, and I've got my eye to climb the social ladder, I'll see how well these work... oh, right, she's female. Never mind.

Photo Wednesday: Jackson Pollock Edition

Behold, the aesthetic force of a single handful of butternut bisque!



At least I haven't heard her singing "threedy boogie college"... not yet, anyway.


Update: As requested in the comments, here's the recipe for the "paint"/butternut bisque. It's from a lovely cookbook called Simply in Season.

Rose's Mini-Pumpkins

These beauties are courtesy of Rose and Rose alone.

My only contribution was to get down the permanent markers and hint at certain dire consequences should any marks get on the nice wooden desk.

Yay, Rose!

Easter Sunrise Service

Christ is risen!

(Artwork by Rose)

Product Hits & Misses: Bubbly Edition

It's spring, it's spring!

We had a gorgeous day yesterday. And we started it out with a trip to Target to pick up a replacement for what has become (for us anyway) an indispensible toy. Behold today's first hit, the bubble machine:



Here's a photo from the web of how it looks in the packaging:

Joy got the first of these bubble machines for her birthday at the start of last summer. This year it's called "Amazing Bubbles Bubble Generator"; last year's model was called "Turbo Bubbles Bubble Generator", and both are from a Chinese company called Placo. Cost us about $15 at Target; they only have them during the spring months and into the summer, as far as I can tell. You pour bubble solution into the front of the machine, and then it turns both on and off by means of a single colorful push-button on the top of the machine.

Joy LOVES to turn this thing on and off, and to run around in the resulting stream of bubbles. Yesterday she was actually tracking bubbles and working on popping them, another skill that seems to come and go. The first of the above photos is the one that we use in Joy's PECS book; a highly motivating choice.

Downsides of the toy: it eats lots of bubble solution (make sure you buy an extra gallon of the stuff) and also eats AA batteries of which it takes six. It also comes with a handle on top, but if you try to pick it up with the handle while there's bubble solution in the toy, it will tip and dump out all the solution. Oops. For a cheap plastic toy, it did pretty well, lasting a whole year. Eventually the fan fell off in the back of the machine and there's no way to open the thing up to get to it. Still. You'll notice we ran right out to replace it while the getting was good!

On the MISS side of the equation last year was another battery powered bubble generator called Bubble Bellies: Manely the Lion, by Little Tikes.


Poor Manely. He was a cute idea: you operated him by grabbing a handle on his back and squeezing, which opened his mouth for the bubbles to come out and turned on the fan. Should have been good grip-manipulation practice. But he was too heavy for Joy to turn on and carry around easily, and his handle tended to stick which made him frustrating even if you worked him on a table, and he broke within weeks. Plus he didn't give nearly as good bubbles as the Bubble Generator. Manely = Miss.

So, one more bonus hit before I go today. This one is from Rose.


I first saw these "Multicultural" washable markers from Crayola last fall at Target when I was school-supply shopping for Rose. I passed them over at the time since we were spending so much money already, thinking that I could pick them up as a stocking-stuffer later. But when I went back closer to Christmas, they were nowhere to be found, and I didn't know the right search term (multicultural) to find them online. Suddenly we found them in our local craft-supply store this week. Rose was delighted, and set right in to make a rainbow of people! Wish I'd had this kind of thing back when I was a kid; the standard colors never did justice to skin tones. Heck, I bet my mama wished they had washable markers at all back when I was a kid!

There's your product roundup for the day. JoyMama out.

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!!