Special Exposure Wednesday: Choices

Just lately, Joy's vocalizations are many but her words are very few.

In service of trying to get her to use SOME sort of signifier to communicate -- rather than just going to or grabbing whatever she wants -- we're making a new attempt to use photos for communication, eventually for use in making choices.

Back a couple of years ago, we did some preliminary work with PECS, which stands for Picture Exchange Communication System. It's a structured alternative to sign language in which a person communicates by selecting and handing over laminated pictures, often little line drawings like these:


Joy made some progress with initially learning just the act of handing over the pictures, but she seemed to be attaching words to objects almost as fast as we were providing the pictures, so we let it fall by the wayside.

Between then & now, alas, we've had these regressions.

After the first regression, the language did come back. This time it's not really happening the same way. It does seem to be time to give pictures another try, though this time we decided to use real photos instead of making Joy interpret the meanings of line drawings. So I went and took a bunch of shots of common items in Joy's world, and her senior therapist for the intensive autism therapy got them laminated for us.

Our first step will be using the photos in conjunction with the item or activity, eventually hoping to move to making choices. It's not a strict PECS protocol, more like just making available another avenue for communication.

Here are some of the photos. Do you suppose she'll want to play with the slide...

Or will she prefer the sandbox?


Maybe she'll want to drink some milk...

or possibly some juice instead?


Even without hearing much about these plans, Joy's older sister Rose has picked up on the idea. She's been very excited about decorating for Halloween, and is already making plans for how we'll carve the pumpkins (though we've yet to get to the pumpkin patch). At first she wanted to carve hers with the words "Happy Halloween!" but I do believe I've convinced her to go with "Boo!" instead.

Then she wondered what Joy would want on her pumpkin. And then she came up with a sisterly idea: she would draw a couple of options, and Joy could choose among the drawings! I did not prompt this in the slightest. Here is what Rose drew:


It's such a thoughtful big-sisterly thing. I hope that Joy will cooperate at least a little.

Meanwhile, I've already got the stencil picked out for my jack-o-lantern. Fair warning: it does relate to presidential politics, so don't click if you don't really wanna know... (At least I'm not planning on wearing a politically-themed costume, as I've done a time or two in the past!)
How I'm carving my pumpkin

Make your choice -- and do be sure to vote November 4, or earlier if your state allows!

Maybe.

Joy & Rose's great-uncle & great-aunt gave them a lovely picture-book a while ago, a Caldecott-honor book by Jon J. Muth called Zen Shorts. The book tells several stories-within-a-story, short Zen meditations told in a manner appropriate for children.

Here's one of them:

There was once an old farmer who had worked his crops for many years.
One day, his horse ran away. Upon hearing the news, his neighbors came to visit.
"Such bad luck," they said sympathetically.
"Maybe," the farmer replied.

The next morning the horse returned, bringing with it two other wild horses.
"Such good luck!" the neighbors exclaimed.
"Maybe," replied the farmer.

The following day, his son tried to ride one of the untamed horses, was thrown off, and broke his leg. Again, the neighbors came to offer sympathy.
"Such bad luck," they said.
"Maybe," answered the farmer.

The day after that, military officials came to the village to draft young men into the army to fight in a war. Seeing that the son's leg was broken, they passed him by.
"Such good luck!" cried the neighbors.
"Maybe," said the farmer.

This story is good food for thought for me. I'm not a lot like this old farmer (garden produce notwithstanding). I tend to get dragged down by the "such bad luck" times and get mighty euphoric with the "such good luck" ones.

Here's one recent sequence of events and how it might look in some alternate-universe version of a JoyMama who's got the Zen thing going on:

Toward the end of last school year, JoyMama learned that Joy's speech therapist was going to take a different position in the school district, and wouldn't be available for Joy's team the next year, though ideally we'd have loved to see all three team members continue.
"Such bad luck," her loyal blog-land friends commiserated.
"Maybe," replied JoyMama.

Then we learned that the replacement would be a newer speech therapist with a lot of energy and good ideas. The new speech therapist coordinated efforts with the occupational therapist to bring projects to Joy's daycare in which all the daycare kids could participate. Not only is Joy taking well to the new strategy, but now is producing take-homes suitable for scrapbooking!
"Such good luck!" came the cheers in the comments.
"Maybe," replied JoyMama.

Then came word several weeks into the school year that the occupational therapist, who's been doing wonderful work with Joy and MADE several weighted vests for her, got reassigned to classroom-based work and would be leaving the team pronto. Now a totally unfamiliar OT would have to learn all about our complicated little sensory-seeker, all from scratch.
"Such bad luck," sympathized the readers.
"Maybe," replied JoyMama.

Then we learned that the new OT we've been assigned comes to the school district from Birth-to-Three (so she's experienced in working with early-childhood issues) and not only that -- she used to be the OT for one of the other kids at Joy's daycare, so she's already acquainted with Joy and Lynda and how the daycare is set up! I met with her this morning, got her signed up onto our team Yahoo group, she asked good questions and sounds enthusiastic.
"Such good luck!" exclaimed the bloggers.
"Maybe," replied JoyMama.

I guess we'll have to see what's next to come our way!

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?

Fall Comes to the Garden

Our vegetable gardening is one of my favorite spinning plates of the summer months.

I learned to love gardening from my father, and the basics of preserving what we grew from my mother and my father's mother. The backyard garden behind the house where I grew up was a continually expanding project. Every year Dad would rototill up just another smidge of lawn, until eventually the garden ballooned to take up almost a third of the yard.

Our main vegetable patch here has stayed stable at 20-some feet per side, but we expand by finding new flowerbeds in which to plant produce. Rhubarb replaced hostas; basil replaced pampas grass; okra (with its beautiful hibiscus flowers!) replaced rose canes; a strawberry bed replaced a stand of Snow-on-the-Mountain; and this year my front flower bed held rainbow chard instead of salvia.

When the garden is in full swing, it's a feast for the eyes as well as the tummy. Here's a shot JoyDad took back in August:

Especially great crops this year: bok choy, kohlrabi, beans, peppers, the aforementioned chard. Strawberries and sour-cherries did pretty well too, as did the rhubarb and okra. Also mulberries, not in our yard but we picked and froze a whole bunch from a tree on nearby park property. JoyDad keeps pickling hot-peppers:

Joy is willing to partake of just about everything we grow, even the kohlrabi and the pickled beets! Rose's favorites are the fruit and the sweet peppers and the cherry tomatoes. She likes rhubarb upside-down cake too.

I know I keep harping on the difference this summer's new fence has made to life with Joy in our back yard, but it's really helped with the gardening too. I can now let Joy play on her own nearby while I pick raspberries or go into the (separately fenced) garden to do some harvesting or pull a few weeds. So liberating to only have to keep half an eye on her!

The garden is winding down for the fall now, though. We've had a couple of almost-frosts which have slowed everything down. The tomatoes are petering out, we'll get one more bok-choy stir-fry, the beets and beans are all in, pretty soon it will be time to bring in the butternut squash.

Growing so much food is a help to the pocketbook in these troubled economic times. But mostly it's good for the tastebuds, and the soul!

Special Exposure Wednesday: Northwoods Getaway

It was a long ride for a short vacation -- seven hours in the car each way, leaving early Friday morning (3:30am!) and back home by Sunday afternoon. In between, there was a lot of work to do. This was the traditional "close the family cabins for the season" jaunt to the Upper Peninsula of Michigan, a brief sojourn at the wooded lakefront property that's been in JoyDad's family since 1950. We stayed in one cabin, JoyDad's father and brother stayed in the other.

It would have been hard to improve this visit, other than making it about a week longer and adding a few more JoyDad-family-members who weren't able to come.

First, the colors were spectacular.


Joy loved all the stuff on the ground to play with: the leaves, the pine needles, the plants and little trees. She even loved the big trees:


We were thrilled by how well she stayed in one area. Something of the dynamic that exists in our fenced back yard (whereby we no longer have to hover over Joy every second in fear of her dashing away) was operating up at the lake too. It extended indoors as well, where she stayed well away from the woodstoves and got into almost nothing she wasn't supposed to get into. She did unusually well at walking on the roads too, where earlier this year she kept making breaks into the woods:


It made walks so very pleasant!


We also got to take the pontoon boat for a spin or two, before hauling it out of the lake to put into storage.


It was so lovely not to be dealing with seizures. Last time we were at the lake, the day-by-day knock-down seizure count was 3, 2, 2, 4 -- each with its attendant recovery fuss. We've had seizures every time we've traveled in the past two years. Except for this weekend, where the counts were 0, 0, 0. Joy neither fussed nor bit herself, almost the entire time we were up there (the ride home didn't quite fit the bite-free pattern, but then who wants to have to leave the lake?)

Joy didn't spend as much time on the pier this visit, having too much fun stimming on shore, but Rose has always loved the pier and took advantage of every possible minute before we had to break it down for the winter. She's an awesome hula-hooper:


And I've saved the best photo for last. This is Rose at the end of the pier at sunrise. Doesn't it just look as if she's about to step into heaven?


Bonus points for anyone who can guess what late-seventies movie image this sunrise shot brought to mind for me, before you click & get the answer!

Swinging, Swinging

There's a song about swinging, based on a poem by Robert Louis Stevenson, that I sing to Joy & Rose, that my mother used to sing to me, that her mother used to sing to her. (In case you're keeping track, that would be Joy's great-grandmother, who is 99 years old and reads this blog regularly. Hi, Grandma!)

How do you like to go up in a swing
Up in the air so blue?
Oh, I do think it the pleasantest thing
Ever a child can do!

Swinging, swinging, up in the air so blue,
Swinging, swinging, up in the air so blue!

Joy has (almost) always loved to swing. She's long outgrown the baby swing, of course, but we have photos where we'd put her in the chair and flipped the switch to set the thing rocking, and it made her so happy. Later we made copious use of the swings at the park, and Joy's occupational therapist taught us to swing her in a blanket, telling us that the swinging was useful input to Joy's vestibular system. Therapeutic and fun, too, what a package!

But then at Christmas 2007, Joy had a major regression and her internal swing switch flipped to the "off" position. We first noticed in a January therapy session. In December she'd practically begged for blanket-swinging, to the point that we were using it as reward; in January, she wanted nothing to do with it.

When spring came, we learned the extent of her new aversion to swinging. At the park, I couldn't even get her into the toddler swings that had delighted her so much the previous fall. At the zoo, her beloved grin-filled carousel rides had become occasions for strenuous complaint. She didn't even like the stroller rides back and forth walking her sister to school.

This lasted all the way to mid-September, a couple of weeks ago.

Then, apropos of nothing that we can identify, the switch flipped back "on".

Gleeful swinging at the park. Big smiles on the zoo carousel. Zero protests on the stroller rides. So much renewed joy!

What is it that flips her internal switches? It's been a useful metaphor for me lately in thinking about how Joy operates. This probably won't be the last time you find me using it.

Meanwhile, how do you like to go up in a swing, up in the air so blue?

========

P.S. We're back from the northwoods. I'm saving the full detail for Special Exposure Wednesday, but here's a tiny preview... you can tell a lot about how the weekend went by the total number of seizures that Joy had.

And the number was...

ZERO.

Looking forward to sharing more!

The Top Ten Things

JoyDad and I had a wonderful opportunity last Sunday to talk with part of Joy's community.

Our church invited us to give a presentation to the adult Sunday-school class, which is basically anybody who isn't involved with teaching the children's Sunday-school classes. This was our first go-around with an occasional series that they call "Families Living with Disabilities," where they've asked other families to speak in the past, to let the church community know where things stand with their child's extra challenges and how the congregation can help.

The church is already helping immensely. In addition to prayer support, there are also two rotations of volunteers who serve as one-on-one aides. Joy gets an aide during Sunday-school hour, and another for the nursery during worship (and for several minutes afterwards so that I can talk to people without Joy-chasing). Fortunately she rolls really well with having two different aides each Sunday, and different people on first Sunday of the month, second Sunday etc.

This was an opportunity to add to that, and fill people in who aren't so involved with Joy week to week.

So I wrote, and JoyDad and I presented, a 45-minute session with question-and-answer at the end. We broke it into five parts:

• Top ten things Joy is good at


• Chronology


• What are we doing now?


• How can we invite you to interact with and nurture Joy as part of this community?


• Question-and-answer

Both of us can get pretty chatty when we're on a roll, and the chronology part (what happened with Joy when?) had all kinds of opportunity for digression! We ended up cutting out most of the "What are we doing now" so we could get to the suggestions and still have time for Q&A, but it ended up working pretty well.

Here are some highlights!

First, the Top Ten list. We wanted to make sure that we started out with ability, because it's tempting to only talk about the "DIS." Here's what we offered as the Top Ten Things Joy is Good At:

10) Taking her medicine! (pills and liquid in an oral syringe, 3x per day)

9) Peek-a-boo (she’s just learned to cover her own face with the blanket too!)

8) Getting set for meals (climbs into her chair, buckles up, and puts on her stretchy neck bib)

7) Eating meals (she eats widely and enthusiastically)

6) Asking for more food! (operative word is "mo")

5) Post-diaper routine (opens the drawer, puts in the diaper cream, closes the drawer)

4) Physical strength (the girl has been a powerhouse since birth)

3) Running. Fast. [The link is to Auntie Run-at-the-Mouth, who just linked to us!]

2) Escaping. By running. Fast. (She’d be a great running back; she always finds the daylight!)

1) Winning hearts. Her smile and laugh are utterly contagious, and you just can't help but smile back.

Then here are some of the suggestions we made for interactions with Joy:

1) Get physically on Joy’s level. Example of a powerful exercise I did during Hanen communication-therapy training, trying to have adult conversation where one partner is sitting and another standing, or one is standing behind the other, versus both being at the same level. It's terribly awkward; face-to-face communication is the way to go. (Rhemashope wrote a lovely reflection this week related to this, called "Stooping.")

2) Pare your language use back to the basics, to get it closer to the point that Joy might be able to reproduce herself. Example of teaching a baby to climb stairs – you wouldn’t go all the way to the top and holler for the baby to crawl clear up... you go just a step or two above and encourage them from there. Instead of "Okay Joy, it’s time to put your shoes on now!" try – "Joy! Shoes on!"

3) Imitate her. Treat her noises and movement as if they have meaning, repeat them back to her and then maybe add your guess as to what they mean. Example: if she’s playing with her fingers and says "Grrrr," you could repeat back "Grrr" and imitate what she’s doing with her hands and then add "fingers!"

4) Take turns. She does something, you do something, then you give her an extra pause to see if she’ll do something in return. Keep your turns short, because her turns won’t be long either.

The presentation has been turned into a podcast (42Mb MP3 file, 45 minutes long) and posted online. I don't want to link to it here for all the world to poke at, but if anyone is interested in hearing it, e-mail me and I will send out the link on an individual basis.

I might not get to you till Monday, though. We're going to the lake again, to see the fall colors and help close up the family cabins for the season.