Friday, October 31, 2008

Church-Ladies in the Wild Woods

Or is that wild church-ladies in the woods?

Every year at about this time, the women of my congregation take a much-needed getaway: Women's Retreat. We go out to a retreat center north of here, and from Saturday morning to Sunday noon we hike, talk, reflect, do handwork, worship, sing, and enjoy one another's company and the break from the day-to-day.

Last year Joy came down with a 24-hour tummy-bug, not a week before the retreat. I was up all night holding her as she retched. "I mustn't catch this," I told myself sternly. "I want to go to women's retreat!"

Then a day or two later, Rose caught the bug. Again I was up all night with her, positioning the bucket at 45-minute intervals. "I won't catch this," I promised myself. "I'm going to go to women's retreat!"

Friday came around and I packed up my things for the next morning's departure, still feeling fine. And then...

JoyDad started feeling rumbly in the tummy.

Hadn't even thought of that! But there went the daughter-care for the weekend. I stayed home and took care of the girls (and him, though he didn't let me hold the bucket) while he retched, and missed the retreat. And then, insult to injury, came down with a mild version of the bug myself the following Monday.

This year? I'm fighting a cold, and so is JoyDad. Plus, Joy has discovered how to keep herself from falling asleep, for hours at a time. She stims on her blankets or stuffed animals, and vocalizes loudly. This applies to nap, to bedtime, and lately to wake-ups in the middle of the night too. Rose sleeps through it, but JoyDad and I are missing big chunks of sleep (as we try to fight our colds).

I'm still planning to go to women's retreat, though! The theme this year is "The Power to Lift Up." I'm expecting a beautiful, uplifting time -- our pastor (yes, a woman) always does such a lovely Sunday-morning worship at retreat, and the setting is idyllic, and the company is fantastic. And the craft project is related to the uplifting theme as well...

Wild church-ladies in the northwoods. Can't wait. Think good "sleepy-Joy" and "cold-B-gone" thoughts for us.

Pumpkin photos when I get back!

Thursday, October 30, 2008

Just-in-Time Blessings

There has been a string of events over the past couple of weeks, in which just what I needed came along at just the right time.

First was Rose's bicycle. She's been riding on a low-budget little garage sale bike, with training wheels. I think she was physically ready to ditch the training wheels quite a while ago, but she couldn't find the confidence just yet. However, she's grown so much that the little bike with training wheels is getting almost un-ride-able.

So the other week she was out riding the too-small bike up and down our street, and I'm thinking, "We really need to get her a new bike. Maybe in the spring." And then one of Rose's playdate neighbors (3 years older) and her dad come biking down the street. Playdate neighbor is proudly riding a big bike, just that day handed down from her older sister. Dad says, "Yeah, her little bike was really getting much too small." And I say, "Do you have plans for the little bike? Could I perhaps buy it for Rose?"

He accepted a pittance, but the new bike is much sturdier and upscale than anything we'd have sought out. Plus, it doesn't have training wheels, nor do the ones from the little bike fit it. Rose is delighted with her new toy, and will have great incentive to learn to ride it in the spring.

Fast-forward about a week... I'm backing the car rather carelessly out of the garage, with two girls distracting me in the back seat, and don't notice that I've mis-parked Joy's stroller so that it's sticking just a little bit out from its place.

Crunch. The poor stroller was held together with picture wire anyway, and I'd been mulling the thought of a replacement, but wasn't quite planning to stampede myself into it quite like this.

The next day I'm walking Rose to school, with Joy sitting solo in our old heavy double stroller, which was the only option left in the garage. And on that very walk, the same playdate neighbor girl catches up with us and says she & her dad were going through their storage shed, and since we took the little bike off their hands, would we maybe want to take a jogging stroller off their hands as well? I kid you not! Again, an item in good condition which, when new, was way pricier than we'd have considered shelling out for. So not only does Rose have snazzy new wheels, so does Joy.

The next couple of just-in-time moments were more idea-based than object based.

So Jess over at diary of a mom posts this cool entry about how she's been challenged to train for a half-marathon, and further challenges all her readers to join her. I can't imagine it. I'm too over-committed, and to work up to running that far just involves chunks of time that are beyond what I can do. I'll be cheering for her though... and a seed had been planted.

And then I read an article in Time magazine about the results of a long-term study at Stanford that started following 538 middle-aged runners vs. a control group of non-runners back in the 1980s. There were half as many deaths among the runners as the non-runners, and the onset of disability was 12 to 16 years later for the runners. No difference between rates of osteoarthritis and knee replacements. And, the article advised, "the best way to start an exercise regimen is to come up with a goal, such as losing 10 lb., running a half marathon..." Whoa.

And THEN my wild-woman fire-eating sister-in-law, Auntie Run-at-the-Mouth, posts a just-in-time link over at her running blog. It's a program called the Couch to 5K plan, where you do three walking/running workouts per week, under 30 minutes each, increasing intensity gradually until you're running 5K. Now, I hadn't run in something like 6 years, though I'm in reasonably fair shape thanks to my bike commute. But the bike commute will be ending soon for the season (will post more on that later), and we've got a perfectly good treadmill, on which I ran the first of the training sessions Tuesday. It felt just right.

PLUS -- when the weather is nice enough -- I've got a jogging stroller!!!

I'm going to set a 5K goal for now. But who knows?

On top of all that -- I've got yet another just-in-time blessing to report.

This one relates to my previous post about wanting my home to be a favorite place for Joy's therapists to work, and how a certain standard of housekeeping might relate to that.

Well, the very next Sunday our adult Sunday school class spoke to me on that issue.

Our church has been involved for a number of years in the work of Interfaith Hospitality Network, a program in which congregations take turns opening their church building to host homeless families for a stretch of nights, in a climate of overflowing "traditional" homeless shelters. Our church took an extra step over the past two years, helping mentor one specific family and raise money to rent an apartment for them, with the intent of providing a more permanent path out of homelessness. Things are now more stable for the family, and they've gotten Section 8 housing and the dad has a full-time job, and our church's intensive involvement with them has wound down. The mentors from our church did a presentation looking back on their experiences.

There were three mentors, one for each family member (mom, dad, son). Of the many things the son's mentor had to say, two things were paramount.

First, I learned that the son was on the autism spectrum. Whoof.

Second, the mentor spoke about the challenges of how homelessness can perpetuate itself. Kids who spend a significant portion of their growing up homeless, may tend to internalize it as just the way things are. There are also things related to having a home which, if you don't see your parents handling them, you won't learn them yourself.

Like housecleaning.

One of the goals that the mentors for all three family members worked with was teaching how to keep a home in decent shape. Basics such as how to hold and use a broom...

I think, in my favorite place post, I may have been somewhat too glib about the challenges that so many families face, focusing instead on the challenge the therapists encounter. Perhaps instead of the hint of competition that crept into my musings, I might think instead of providing a place where therapists can draw strength to carry onward to the homes where various challenges keep working conditions from being ideal. Those kids need the therapists at full strength, at least as much as Joy does...

Important food for thought, at just the right time for me.

I am reminded of how God gave the Israelites manna in the wilderness (Exodus 16), enough for each day, for forty long years.

Just what was needed, just in time.

Wednesday, October 29, 2008

Photo Wednesday: Wild Woman Edition

Obligatory cautionary labeling:

Do not try this at home, dear readers!

JoyMama prepares to eat fire
Fire disappears into JoyMama's mouth

The year was 1995.

The instructor was Auntie Run-at-the-Mouth, wild-woman extraordinaire.

The trick is to extinguish the flame by closing your mouth around the stick, thus depriving the flame of oxygen.

It's good to have photo documentation of (some, perhaps not all) wild woman moments!



Monday, October 27, 2008

Pumpkin Patch

We have an autumn tradition of four years' duration now. Every fall we take a trip to a nearby farm with a pumpkin patch and corn maze and petting zoo, together with the family that gave us the Joy! book. It's been a delight to look back over the photos across the years and remind ourselves how our girls have grown!

This year we had a special guest, my younger brother (Uncle Schnirelmann) who was visiting from out of state for the weekend.

The first incident of note at this year's visit was the temporary wristband, to mark that you'd paid your entrance fee. Last year when we tried to put the wristband on Joy, she wailed and fought and tried to chew it off until we gave in. This year? Wore it with zero complaint. I think it may have something to do with the other bracelet she wears...

Once we got inside, Joy wasn't too much interested in the petting zoo, or the pumpkins. Like Kayla over at Opposite Kids, Joy found the stimmies more interesting than the main attractions -- she preferred to play with bits of straw or cornstalk from the ground rather than petting animals or noticing pumpkins.

She did really well with the children's corn maze, though (which featured one obvious main path through):

Joy in corn maze
Rose and her friend enjoyed the corn maze as well:

Rose and friend in corn maze
The absolute best thing about the pumpkin patch trip, though, was Uncle Schnirelmann. He and Joy invented a game whereby she would run to him, and he would grab her by the arms and hoist her all the way up his 6-foot-tall frame, to rest her knees on his chest and laugh into each other's faces. They did this all over the farm...

Joy's uncle lifts her high in the sky
... even in the pumpkin patch itself (much better than scouting for those pesky pumpkins, in a rather picked-over section of the field anyway).

Another lift for Joy from her uncle
We've yet to carve the pumpkins we brought home, but Rose did successfully engineer getting Joy to make a choice among the options that she drew:

Photo of Five Choices of Jackolantern Faces
Joy's hand landed on the one at the lower right, with the eyelashes. The cutest of the bunch, to be sure, but the most challenging to carve! I'll post jack-o-lantern pics once we have them.

UPDATE: OK, I only just noticed: there's something at least slightly similar in Joy's body position playing the jump-up game with Uncle Schnirelmann, and mine in the sidebar photo leaping off the bridge. What can I say but... that's my girl! Wild women, we are!

Sunday, October 26, 2008

Popeye Sighting!

I mentioned a couple of posts ago that Joy's words have faded away in recent weeks. She's interactive, she plays peek and chase, she's experimenting with a range of vocalizations, lots of good stuff, but the words just haven't been coming out.

So it was extra-special last night to have a verbal Elvis Sighting.

I was thinning the last of the strawberry bed before the hard freeze that's supposed to hit in the next day or two. Joy was running around the back yard entertaining herself with minimal supervision.

Then she suddenly ran up to me, threw her arms around me, and said,

Never heard it before. Sounded for all the world like the laugh of:

Popeye the Sailor Man
Bless you, little one. I'll give you a hug-hug-hug any time you like.

Saturday, October 25, 2008

Joy! by Joyce Carol Thomas

This lovely board-book was given to us by friends in 2004 to celebrate the arrival of our younger daughter into our lives. It has nothing to do with autism in particular, but everything to do with... JOY.

by Joyce Carol Thomas
pictures by Pamela Johnson

You are my joy
In every season
Summer, fall, winter, spring
You touch my heartstrings
You are my joy

You are my joy
Freed in the whipporwill's wing
Heard in the tall grass that sings
In the laughter that rings
From the sunny side of porches

You are my joy
Snug in a scarf and jacket
Rolling in leaves
Spun from autumn trees
In a yard lit by sunset

You are my joy
Lulled by the sound of
Icicle chimes
And water rhymes
Tap-dancing on sidewalks

You are my joy
Pointing at rainbows
Circling the earth
As it gives birth
To flowers

You are my joy
In every season
Summer, fall, winter, spring
You make my heart sing
You are my joy!

Thursday, October 23, 2008

Extended Metaphor

Back toward the beginning of October, I reported that Joy had suddenly begun to enjoy swinging again, after having gone suddenly "off" anything swinging-related the previous Christmas. It was, I said, akin to a sudden flipping of a switch somewhere inside her head. And I said that the switch-flipping metaphor was making a lot of sense to me, and you'd probably hear me using it again.

Well, here it is. Behold, the extended metaphor:

Mixer Board at Smart Studios
The above is a high-falutin' mixer board at Smart Studios, where JoyDad's band did the mixing work on their latest CD. (Smart Studios was founded by Butch Vig of Garbage, and has done work for Nirvana & Smashing Pumpkins as well).

But a sound board or light board would work too, anything with a bunch of flip switches and fader/dimmer switches and a variety of knobs.

Here's the thing. Sometimes with Joy, attributes or abilities or favorites change suddenly, like the flip of a two-position switch, as happened with the swinging. Sometimes we get a dimmer switch, like a strange fading of language that has happened in the last couple of weeks (she's basically using no words now). Meanwhile another dimmer switch for experimental vocalizations has been slowly turning on. The biting, fortunately, has faded off, and is now reduced to a rather cute occasional nibbling of toes. Expressing frustration by throwing things, meanwhile, has faded on.

When a whole bunch of switches slam to off all at once (or fade to off fairly rapidly), we call it a regression. But more often, faders are going in different directions, and we don't quite know if they're related, or what might be causing what.

I was talking with JoyDad about this and asked if I could use his photo, and he told me another really cool aspect about the board at Smart: the switches are motorized and you can actually see them moving as a recording plays. Cool, and a little spooky.

The fact that Joy's switches do go both ways feels spooky to me in general. Neurotypical kids, their switches don't do this as much, at least when it comes to learning. Likes and desires are a different matter, but once a kid learns words, you expect the words to be there. Once she can stack blocks, you don't figure you're going to find yourself teaching it all over again.

Cover of Look Me In the Eye, by John Elder RobisonI did have the thought to extend the metaphor still further, something about the hands of the Almighty dancing across Joy's mixer board or some such. But then I started reading Look Me In the Eye, by John Elder Robison, gifted writer and blogger and proud Aspergian. (Thank you, Jess, for nudging me to get reading on this!) I just got to the part where Robison writes about his engineering experiences doing audio and lights and over-the-top special effects work for a certain high-profile entertainment act. His description of working the light board in the chapter "One With The Machine" is, alas, too long to reproduce here, so I'll just quote one sentence:

It's just like playing a huge musical instrument, and your hands never stop moving on the dimmers.

So now my reverent image of omnipotent fingers on Joy's dimmer switches is hopelessly conflated with a mental picture of the young John Elder Robison working the lightboard in a huge arena... Sometimes metaphors extend in really wild directions!

Does the sound-board / light-board / mixer-board metaphor work for anyone else?

Tuesday, October 21, 2008

Wednesday Photo Blogging: Leap of Faith

In the comments to this post, Barbara/therextras asked if it was JoyMama jumping off the bridge in JoyMama's profile picture. Here's the picture:

Leap of Faith

I responded with a question of my own: "You don't think I'd marry a woman who would fling herself untethered off a bridge, do you???? Well??????"

There are a number of possible answers to the question:

1. It's not JoyMama, so therefore the answer is no, I wouldn't marry a woman who would fling herself untethered off a bridge.

2. Yes, it's JoyMama. I had no idea when we got married that she would do such a thing, and I'm shocked, SHOCKED that she would put herself at such great personal risk. It reflects badly on her as a person and sets a terrible example for Joy and Rose. For I would never do such a thing…

3. Yes, it's JoyMama. She made the leap before we were married when she was young and foolish. As part of our wedding vows, she swore off such desperate acts of thrill seeking, promising to be the sedate librarian from a small town in Kansas I always hoped to marry.

4. Yes, it's JoyMama. In fact, I was the photographer. Which means I stood by, nay, encouraged her to fling herself off the bridge to meet an uncertain fate. It reflects badly on me that I would allow her to put herself in such peril and not do anything to try to stop her.

What exactly is a leap of faith anyway? In common parlance it means believing in something despite, or in the absence of, any available evidence.

Marriage is quite the leap of faith, isn't it? We vetted each other by dating for a year and then spending a year as an engaged couple. But forever is an awful long time to commit oneself to another. In essence, we based a decision on how to order the rest of our lives on a small slice of time compared to how long we were planning on being together. Thankfully, neither of us got cold feet before our wedding day, and at least so far, almost 15 years in, our faith in each other and in the decision to combine our lives has been rewarded. I mean, look at those pictures of the girls in their pretty flower girl dresses -- it amazes me every day how richly blessed we are to have them.

I guess having kids entails a leap of faith as well. There's no crystal ball you can look into to see how they will turn out. Certainly, we wish Joy didn't have to contend with autism or epilepsy, or that our family didn't have to deal with the fallout from those conditions. But if I'd had a crystal ball to gaze into before Joy was born, it would have shown me that despite all of that, raising Joy would turn out to be a wonderful experience. I tell people all the time that despite the struggles and challenges of raising Joy, we ain't giving her back. In fact, because it is a such a challenge, I think the successes we have with Joy (like seeing her becoming more interactive with people, as she has lately) are that much more rewarding.

Oh yeah, the picture... That is indeed JoyMama taking the plunge. And I am the photographer. We had already been married for a while at the time. It's not quite the leap of faith it might have been... We were camping at Baxter State Park in Maine. On one of our first days there, we were hiking near our campsite and came upon the bridge in the photo. There was a group of people swimming in the river, and a number of them were also jumping off the bridge. And not perishing... There was deep spot on one side of the bridge which made jumping off relatively safe. It was quite a refreshing way to end a day of hiking up and down mountains.

And I, of course, took my own turns leaping....

Monday, October 20, 2008

Happy Anniversary UncleDO and AuntLO!

On October 20th, 2007, Joy & Rose officially gained a new auntie by marriage.

They also both got to be flower girls!

Now, there's always a bit of risk entailed in the flower girl thing, and the younger, the riskier. You never quite know how they're going to perform at the actual ceremony! Having a three-year-old in the mix along with her five-year-old sister makes things more than a little unpredictable.

When the three-year-old also has autism and epilepsy, all bets are off.

The happy couple didn't waver as the planning process went along. They were quite definite: they wanted both girls in their wedding, even though they of course knew about the autism and the epilepsy. No, they didn't mind if I walked down the aisle next to Joy to keep things on track. And whatever happened, they assured us, it would be cute and make a good story.

Perhaps you can tell already that AuntLO was the ultimate UN-Bridezilla. We had such fun together figuring out dresses for both girls to coordinate with her ivory & burgundy wedding color-scheme, while simultaneously trying not to break the bank.

It's a rare late-October day in Chicago that comes in with a clear blue sky and over 70 degrees, but that's what they got for their wedding day on October 20 last year:

The Church
We had a couple hours drive to get to the church, and Joy did have a pretty big seizure at one point along the way, but we were hopeful that she'd be feeling fairly well recovered by the time we got there and got her all dressed up. (The Oct. 2007 trip to Chicago was one point in our data gathering that, up until this October, travel seemed to trigger seizures.)

Then she had another sizable seizure just as we were walking up to the church. Arghhh! Despite her obvious unhappiness, we went ahead and got both girls dressed up in the church bathroom, and got their lovely little baskets of rose petals, and hoped for the best...

And then while the processional music was playing and we were waiting our turn to walk in, she had another one.

The poor kid. I tried to walk in with her anyway, thinking that maybe she'd be so stunned that she'd just start moving forward and keep going.

Rose flower-girled like a pro, walking slowly and regally and strewing rose-petals "just so" (she'd been reading the Kevin Henkes book Lilly's Big Day for good practice!)

Joy took three steps with me, a little in front of me. Then she flung her petal basket in one direction and went running in the other, between a couple of empty pews. All she wanted to do was escape.

I pursued my sweet baby, picked her up, cuddled her the rest of the way up to the front of the church, circled around and pretty much immediately carried her back down the other aisle out the back of the church -- to await the incipient misery and fuss that always follows soon after a big seizure.

The beautiful old Catholic church building in that old Chicago neighborhood did not, of course, have a cry room. That wasn't on anyone's radar back when the church was built (heck, the term "radar" wasn't even coined until the 1940s!)

Fortunately there was a lovely little fenced grassy yard and garden at the back of the church, and it was so warm we didn't even need a wrap. I followed Joy around, trying to keep her safe through the worst of her reaction until she was a little calmer, and then we snuck back in to grab my purse and brought Rose out as well -- turned out that the full-fledged wedding mass was getting too long for her. So I snapped some photos. Here's Joy:

Joy the flower girl in the yard
There was a statue of St. Francis in the middle of the little lawn, about the same height as Joy and shorter than Rose!

Flower girls Joy & Rose visit with St. Francis
I won't post any of the official photographer's shots, from after the ceremony. Not only are they all from the front, Joy doesn't do well with posed photos and wasn't in a particularly cooperative mood.

AuntLO and UncleDO, though, were over the moon. We were so delighted to share in their joy, and touched beyond belief at their insistence on including Joy in their celebration.

Afterwards we discovered in conversations with other guests that, if we didn't tell them about Joy's seizure, they just assumed that she was having a three-year-old moment there in the aisle at the ceremony. Just like any kid might do.

It was cute, and made a good story.


As part of "and they're living happily ever after," I'd like to mention that AuntLO and UncleDO came to visit us last month. We had a wonderful time, including a family walk by the lake and a restaurant dinner. Here's Rose feeding the ducks during our walk:

Rose feeds the ducks
We're grateful beyond words for our amazing supportive family. Happy first anniversary, AuntLO and UncleDO. We love you guys!

Thursday, October 16, 2008

Favorite Place

I'd like our home to be our therapists' favorite place to come work.

Actually, I'd like all their clients' homes to be the favorite, such that every therapist could look forward to every visit with every family! But I know that's not how it is in the real world, and since the only home I can influence is my own...

This "favorite place" idea of mine grew organically from the seed of wanting to get the most out of our therapy visits as possible. To me, that meant being present and engaged to try to learn all I can from the therapists' expertise; sharing what I know about Joy and what's going on with her; and coming up with my own ideas about how we can work together.

It also meant being organized, and available, and on-time for the sessions. (Occasionally I flub, but get easily forgiven because of my track record.)

Therapists respond positively to such efforts! Cordial partnerships have ended up becoming friendships, and I've ended up with even more reasons to want to make things pleasant.

I found myself taking a little extra care to keep the floors on which they work/play from getting too disgustingly grungy, and to keep the bathroom reasonably clean as well. Not that I wouldn't do that for our family (right?), but this provides an extra little kick in the pants.

Then there are the little things that make life a little sunnier. Like small gifts of produce from the garden. (Especially among our intensive-autism line therapists, these people aren't making a princely wage!) Or passing along a certain jack-o-lantern stencil to a therapist who gave me the thumbs-up about a certain sign in our yard. Or complimenting a therapist on the piano piece she played for Joy during a session, ending up with me asking to borrow the sheet music.

Most of this stuff I'm almost doing more for me and Joy than for the therapists, and I wouldn't be doing these things if I felt it was a burden or an obligation. Instead, it makes me happy -- and it makes them happy -- and happy therapists are more likely to bring that attitude through the door.

As I said before, ideally there would be no hint of competition between families. And I know that there are reasons why, say, one's bathroom might be hard to keep clean or life is just too freakin' insane to do one more extra thing. I've had stretches like that, most notably this past winter, and nobody's held it against me.

Speaking of this past winter, for Christmas last year we gave our therapists little gifts of homemade strawberry freezer jam. For some reason, thinking back on that now, it reminds me of a line from a LaVyrle Spencer romance called Morning Glory. (Yes, I do have that kind of stuff on my shelf, among the highbrow goodies. Now you know.) Anyway, the heroine is trying to hire a lawyer, during WWII when money is tight, and she brings with her a quart of honey from the farm.

"Might this be construed as bribery, do you think, Gladys?"
"Construe it any way you like, but try it on a bran muffin. It's indescribable."

Construe this any way you like!

Wednesday, October 15, 2008

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:

Some Boardmaker-type line art
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...
Photo of Plastic Slide
Or will she prefer the sandbox?

Photo of Turtle Sandbox

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

Photo of Gallon & Sippy of Milk
or possibly some juice instead?

Photo of Pitcher & Sippy of Cranberry Juice

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:
Photo of Five Choices of Jackolantern Faces

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!

5 Minutes for Special Needs

Tuesday, October 14, 2008


Cover image: Zen Shorts, by Jon J. MuthJoy & 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!

Sunday, October 12, 2008

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?

Friday, October 10, 2008

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:
Basket of tomatoes, okra, peppers, cucumbers, beans!
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:
JoyDad canned a peck o' pickled 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!

Tuesday, October 7, 2008

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.

Fall Colors in Tree-Lined Lane
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:

Joy is a tree-hugger
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:

Joy runs down the lane to catch up with Mama
It made walks so very pleasant!

Mama, Rose & Joy go walking in the woods
We also got to take the pontoon boat for a spin or two, before hauling it out of the lake to put into storage.

Girls on the boat, on the lake
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:

Rose hula-hoops on the pier
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?

Rose on the pier at sunrise
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!

5 Minutes for Special Needs

Sunday, October 5, 2008

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...


Looking forward to sharing more!

Thursday, October 2, 2008

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.