Wednesday, June 30, 2010

Reverse Psychology

For some strange reason, Joy didn't want to take her seizure pills last night. Usually there's no trouble. I wrap them up in a bit of fruit (last night it was Turkish apricots, always good to up the fiber in the diet, if ya know what I mean!)

I was chasing her around the living room with the apricots, doing the silly-mommy approach of "num, num, so good!" and pretending to eat them myself before trying to pop them into her mouth. She was having none of it, and I was getting frustrated.

Then JoyDad said, "Let me try."

He placed the apricots on the corner of the counter closest to the living room, and then backed off.

Joy got a mischievous look in her eye, zoomed around past the counter to snag the apricots, and chowed down without even slowing down.

JoyDad understands this girl a little too well, sometimes. Mischief-makers, the both of them!

Sunday, June 27, 2010

Joy's All-Natural, Super-Power, No-Fail Laxative

OK, since we've been talking toilet-training...

I don't think I've blogged about it, but one issue that we've had on and off with Joy has been a problem with constipation. You wouldn't expect it with her, because she eats a lot of fruits and vegetables, but there it was. We had her on a low dose of Miralax for something like a year, which helped. And then at some point earlier this year, the situation had gone TOO far in the opposite direction, and Joy was objecting strenuously to the ensuing messy clean-ups, and so we stopped the Miralax.

Things have gradually crept toward constipation again, skipping days and such, if you know what I mean.

But since spring brought warmer weather, we have discovered the absolute fool-proof, totally natural, works-every-time way to induce the desired effect.

Go out and play in the water.

I'm serious. Every single time Joy goes out to splash in puddles in the street, or cavort in the inflatable pool, or run through the sprinkler, or even (as this morning) dance in the rain on the deck -- shstuff happens.

With the backyard play, I've gotten so that I just take the diaper bag out with me and change her right there in the (nice private fenced) yard. Because of course the water play is so much fun, Joy totally hates to have it interrupted to go inside and change.

It's almost too bad that this super constipation-problem-solver is so extremely natural. Something that works this well could make millions if it were an ingestible substance or a purchase-able device...

As it is, we'll just continue to use it strategically and count our blessings.

Friday, June 25, 2010

An Idea Whose Time Has Come

A quote from one of Joy's daycare reports:

Potty: Sat on the potty after AM snack. Diaper was damp, so didn't think she would be able to go. But she sat. After a few minutes I asked her if she was all done. She looked away from me and within 30 seconds she was peeing. When she was done, she reached for the TP. Cool!

This quote was from April 2007. Joy was not yet three years old.

At age 6, she's still in diapers around the clock.

When it comes to toileting, the sliders and switches on Joy's mixer board (my favorite metaphor for her developmental pattern) have turned on, and then turned off again. As her words have repeatedly come and gone, so has her willingness to make beginning steps toward potty training.

It's been very hard to decide about making an all-out effort to get the toileting truly underway. I'd really been dreading any approach that involved panties and letting the accidents happen. I'd been rocked on my heels by the experience of datri over at Opposite Kids, whose Kayla was unswayed by an all-out four-day diaper-free marathon over the winter holidays.

One complicating factor for us is that most of the advice about toileting readiness for neurotypical kids has not been consistent with Joy's trajectory. Consider this list at

  • Can sit down quietly in one position for two to five minutes. [In our dreams!]
  • Can pull his pants up and down. [With support - this one we've got]
  • Dislikes the feeling of wearing a wet or dirty diaper. [Our sensory-seeker doesn't mind at all, might even like it]
  • Shows interest in others' bathroom habits [Nope.]
  • Gives a physical or verbal sign when he's having a bowel movement such as grunting, squatting, or telling you. [Oh, come on... you can tell when infants poop!]
  • Demonstrates a desire for independence. [Hmmm... a little, maybe]
  • Takes pride in his accomplishments. [Yes, but maybe not how they think]
  • Isn't resistant to learning to use the toilet. [Totally off-and-on]
  • Is in a generally cooperative stage, not a negative or contrary one. [Again, off and on. Those switches flip very fast.]
  • Can follow simple instructions, such as "go get the toy." [Can, yes. Does? Maybe.]
  • Understands the value of putting things where they belong. [In a few limited situations]
  • Has words for urine and stool. [Not even.]
  • Understands the physical signals that mean he has to go and can tell you before it happens or even hold it until he has time to get to the potty. [Only the one "kee" incident.]

The bits about being resistant/cooperative have been a big part of what's standing in the way about making a commitment to do anything more than sit potty in the evening before bath. For quite a while Joy was willing to sit on the pot and happily flip through a board-book or two. But then a few months ago she started physically resisting as soon as I would ask her to potty-sit -- and this kid can put up some powerful resistance, let me tell you!

Fortunately, Joy's intensive-therapy folks, Agency 2 (serving up their own House Blend of therapy combining behavioral and relationship principles), have a nicely flexible approach to toilet training.

What has come together in the past weeks has been a combination of readiness on the part of both Joy and her parents, and the willingness of Agency 2 and Joy's awesome-daycare-lady Lynda.
  • Joy is often dry overnight.
  • She's willing to drink a lot of water when we push it.
  • She understands "first/then" and is willing to work for a relatively immediate promised reinforcer.
  • Kindergarten is coming up and we want her to have this learning underway.
  • Agency Two's training guidelines have the flexibility and willingness to "schedule train" without making the frustrating commitment to do a diaper-free boot camp approach.
  • Lynda is happy to combine our goals for Joy with her daycare's standard potty-schedule routine

Following the Agency 2 recommendations (which are proprietary so I can't post the helpful document online, sorry!), we first did some thinking about desirable rewards that could be reserved for potty encounters, in a hierarchy of desirability. Then we spent several days after we got home from the lake trying to record the state of Joy's diaper every half hour. One important switch here was moving from having Joy in a onesie round the clock to wearing just T-shirts and elastic-waist pants. Onesies are delightful for preventing diaper-digging, but not so fine for moving toward toileting independence. The schedule-recording didn't actually reveal a lot in the way of pattern, but it did get us into a toileting schedule mindset, and pre-shadow for Joy that there was going to be more attention to diaper-related activities soon to come.

Then we sat down with our senior Agency 2 therapist and talked about initial goals, to get us and therapists and Lynda all on the same page. We decided on a schedule of a potty-run every 1.5 to 2 hours, in which Joy would help pull her pants down, clamber up on a footstool to sit on the toilet (with insert), sit for a nice slow count of ten, and then get a reward! Then she has to cooperate with re-diapering (generally standing up, at home anyway), pull up her pants, and work through a hand-washing routine.

We started on Saturday. So far, we have succeeded in getting through all the steps, including the ten-second-sit, every single time. As a side benefit, Joy is learning to count to ten, and is especially eager to fill in the "teh" when we get as far as nine. Sometimes she's in a mood to sit quite a while longer, though, if she's excited to play with her ribbon-reward or mylar-balloon-play reward.

And yesterday morning she woke up dry, was willing to play an interactive people game for a while after the count of ten -- and did a most excellent potty-pee.

I don't imagine this will be either quick or easy, and surely we'll be dealing with sliding switches for years to come. But finally it does feel like we're on our way.

Wednesday, June 23, 2010

Another Sign of Progress and Maturity

You know how when a baby is little, you have to take her to the pediatrician all the time? First every couple of days or weeks, then every few months, then at half year intervals, then annually to age 5, then it spreads out to every two or three years.

It hasn't exactly worked that way with Joy. We started out with that basic pattern, but things kept intervening. Like seizures, like autism. When we eventually switched pediatricians a little while back, ending up with Joy's current family doctor who is expert in special needs, he put her on a schedule of follow-up visits every four months. Lots of appointments.

I'm happy to report, though, that we've recently "graduated" to longer intervals with a couple of Joy's specialists.

First came the pediatric neurologist. We've been seeing him at least twice a year for quite a while now. The last three visits, though, we've been able to report that we've not seen any seizures since the prior visit. And when we saw him in May, he told us to schedule the next appointment a full year out. Woohoo!

Then yesterday we had to go back to the eye doctor. I blogged about this one last year; how I'd been sent back to the opthalmologist where we'd had the worst appointment experience EVAH, then managed with a lot of pre-planning to have a much smoother experience a year ago. Our follow-up appointment yesterday wasn't starting out so well -- even though we had the first appointment of the day, the waiting room was crowded, the lady at the desk didn't want to hear about Joy's needs ("you can tell the person who comes to get you"), and Joy was starting to get fussy in the 20 minutes it took for the person to come get us. As crowded as it was, I was fearing that we wouldn't get the private exam room to wait in low light for the dilation; plus the more people, the higher the chance of waiting delays. Arghh.

However, once we got into the exam room, people started to jump for us (jump for Joy?!) Joy was unhappy but at least willing to let her attention be directed enough to look where they wanted her to look. The doctor came in quickly -- and said that she really wasn't seeing the kind of strabismus/tracking-problems that had sent us there the year before. (We still see tracking issues, but I haven't been noticing them nearly as much). She didn't think it would be worth it to dilate Joy's eyes as we'd planned (YESSS!), and told us we wouldn't need to come back for two or three years unless the tracking got really bad, to the point that she was having trouble maybe half the time to pull her eyes back together.

Fewer appointments is always a fine thing. It's so good to have both the improvement and the maturity.

Friday, June 18, 2010

A Newly-Acceptable Vegetable

My daughter discovered a new vegetable last night!

She's so picky with veggies -- her repertoire has been so terribly limited. Any new addition to the acceptable vegetables is utterly delightful, and met with great rejoicing by her parents.

Tender fresh raw snow peas from the garden are now in the thumbs-up category. Wahoo!

By the way. We're not talking about Joy and autism.

We're talking about Rose. Y'know, the neurotypical one.


Wednesday, June 16, 2010

The NEW Funniest Thing in the World

Forget being entertained by the sprinkling of parmesan cheese. That is so, like, last month.

No, if you want real funny, you have to say, "Ta-DAHHHH!" as if you were producing a rabbit out of a hat.

Then your play-partner has to announce "Ta-DAHHHH!" right back.

And then you both giggle like the dickens, and then do it all over again.


Friday, June 11, 2010

The Power of Words

As I think I've mentioned before (and you may have noticed!), I love to play with words. There are so many of them, and they're flexible and resilient at the same time, and the possibilities for interesting combinations are practically endless!

They also wield incredible power.

In 1987, Mayer Shevin wrote the following poem, called "The Language of Us and Them," reflecting on how people without disabilities speak about themselves and about people with disabilities.

We like things.
      They fixate on objects.
We try to make friends.
      They display attention-seeking behaviors.
We take a break.
      They display off-task behavior.
We stand up for ourselves.
      They are non-compliant.
We have hobbies.
      They self-stim.
We choose our friends wisely.
      They display poor peer socialization.
We persevere.
      They perseverate.
We love people.
      They have dependencies on people.
We go for walks.
      They run away.
We insist.
      They tantrum.
We change our minds.
      They are disoriented and have short attention spans.
We are talented.
      They have splinter skills.
We are human.
      They are.......?

You can read about the heartbreaking inspiration for this poem on the Autism Society of Middle Tennessee's web site.

While the poem wasn't originally about autism, it fits strikingly well with how "we" define "them" when it comes to the autism spectrum. I first heard these words in the autism context back in March, at the start of Paula Kluth's workshop at the Autism Society of Wisconsin (ASW) conference. When I walked in a little late, there was a video playing on the big screen, in which the words of the poem were being presented in the context of autism, with music and images and additional text. At the time I didn't even catch the name of the DVD, but I later learned that it was called "The Power of Words: How We Talk About People With Autism Spectrum Disorders Matters!" The creator is Judy Endow, MSW, autism consultant and self-advocate.

It was just announced on the ASW online mailing list that the video has been selected to receive the 2010 Autism Society Media Excellence award, to be presented at the July national conference of the Autism Society of America in Dallas. Congratulations to Judy! (Though there'd be no reason for her to remember me, I've heard her speak and met her briefly. Her words have taught me much -- and made me think.)

The DVD is sold online at the Autism Aspergers Publishing Company.

Here's one more text-excerpt from "The Power of Words" taken from the publishing company web site above:
One time I started making a turkey sandwich.
Then I remembered
I had a banana that needed to be used up.

So I decided to make
a peanut butter and banana sandwich

The group home worker
looked at the new person
she was training and said,

“Judy must have forgotten
that she wanted a turkey sandwich.
They have short attention spans, you know.”

Do you recognize this kind of language, in your own speech (guilty here, probably more often than I know) or being used by others to describe your child or being used to describe you?

I love words. We're all responsible for being aware of their power, and using them in ways that em-power.

Tuesday, June 8, 2010

The Point of a Party

A couple of posts back, I promised a reflection on Joy's sixth birthday party, a gathering that took place on May 23.

We've fallen into something of a pattern for these birthday parties, inviting families from church and the neighborhood and school, with kids both Joy's age and Rose's age.

The weather cooperated for playing out in the backyard, unlike last year (which was rainy and cold, to the point that we barely got out onto the deck). It was unusually warm, summery warm! Almost too warm for the bouncy castle, which heats up fast in the sun.

We had a fine turnout, and the kids were soon running all over the back yard and playing, and riding Joy's new and old trikes up and down the driveway.

The only one who wasn't having much fun... was Joy. She tolerated it OK, but all she really wanted to do was play with her mylar balloon and watch her videos.

Even the present-opening wasn't a thrill. Oh, she tolerated that too, and pulled on the paper and got them open. But when we looked at the photos JoyDad had taken of that part of the party, there wasn't a single smile on her face. (Though the presents were well-chosen and she's been playing happily with them since.)

Even our own big present, the big kid tricycle, we managed to bungle somewhat. After the party-preparations were in place but before the guests arrived, we decided it would be a good moment for the tricycle presentation. So we all trooped out the back door and I went to the back of the garage where the trike was hidden, to bring it out and surprise her as she got to the driveway.

Unfortunately, the family trooping out to the garage made Joy think she was going to get a car ride, something she loves to do. She was terribly disappointed that no car ride was forthcoming, and wouldn't even look at the trike as she expressed her displeasure.

Basically, the party worked for everyone but the person it was ostensibly celebrating. Not that it was a train wreck, it just wasn't much fun for our six-year-old.

Next year I hope to do better. One thought would be a series of birthday playdates, such that we could involve the friends but make it less a crowd situation. (And there will be new people in the circle; we'll need to work explicitly on involving kindergarten classmates, I think.) Another thought would be a pool party at a local motel, something that was a good success for some friends of ours a couple of years ago.

It's good to see possibilities for learning and growth, for Joy's parents as well as for Joy. Happy birthday, Joy, and here's to the upcoming year!

Thursday, June 3, 2010

Northwoods Adventure: Why We Had to Come Ashore

So -- as we left things in the previous (inadvisedly cliff-hanger-y) post, we'd been summoned back to the cabin in a voice that brooked no dispute, without knowing why. The distance would have been an easy dash on land, but not from an anchored pontoon boat with the crew bobbing about in the water! Had to get everyone back on board, haul up the anchors, get the boat restarted despite a balky battery, then ease it back into the super-shallow water next to the pier. All without unduly scaring the young'uns... Rose in particular has such an imagination.

As you can guess, the adults on the boat had no trouble imagining a couple of dire health-related scenarios too. Just in case, I volunteered to keep the girls busy at the pier and let the guys go pounding up to the cabin to see what was up.

GrampaK was on the screen porch, trying to catch his breath. From the adrenaline. According to reports, the first words out of his mouth were, "The window exploded!"

He'd been sitting at the dining table with his back to the window in question, halfway across the room. All of a sudden there was a huge crash, and glass from the window came flying all over the room, some of it hitting him in the back and head. He escaped to the porch and was waiting for reinforcements to try and sort things out (and check for cuts, which fortunately were none).

Guess what they found on the kitchen floor, amidst the shards. A sizable hawk, somewhat dazed but very much alive! [Update: and here it is!]

We suspect that the hawk was stooping down on one of the birds that was nesting in the eaves of the cabin -- and that the nesting bird had a much better feel for its position relative to the cabin than that hawk did. The impact must have been full-tilt, probably deceived by the reflection of the woods in the glass.

JoyDad and Uncle Marathon tried to toss an old army-blanket onto the hawk, to wrap it up and get it out of the house without any close encounters with beak or talons. But the hawk wasn't as injured as all of that. It kept escaping as the blanket came down. Then it flew into the loft. The guys ended up chasing it all around with a broom before they finally got it out the door. Then they had to use the broom for its intended purpose. There was glass everywhere, strewn all the way across the cabin floor and furniture.

We actually only had one night with a tarp nailed over where the window should be. GrampaK and Uncle Marathon went to town the next day, and despite the holiday weekend, found someone to cut a pane of glass to the right size. They brought it back unbroken over bumpy roads, puttied it in, and with any luck, it'll last sixty years like its predecessor.

As long as the hawks steer clear.

[Great big additional update!]
Great googly moogly, y'all. It wasn't a hawk after all. It was a ruffed grouse!!

Photo from

Huge tip of the hat and a low bow to Kelly's bird-enthusiast son, from the comments. Now that he pointed me in the right direction, I can see it: the chicken-like beak instead of the hooked raptor-beak, and the dark band of feathers (broken in the middle) at the end of the tail.

I guess this gives us all something to grouse about?! :-)

Wednesday, June 2, 2010

Northwoods Adventures

As the holiday weekend approached and we watched the weather forecast for our northwoods getaway, we feared an adventure full of sweltering heat and vicious bugs. Several years ago JoyDad and Rose had suffered through such a Memorial Day sweatbox at the lake, barely able to step out of the overheated cabins without being carried off by mosquitoes and biting flies. (Other years, we've had snow at the end of May. You just never know.)

This year couldn't have been more beautiful. The sun shone hot at mid-day, but the air was dry and didn't hold the heat at night. In fact, everything was dry. The lake was low. But the drought meant that the bugs were at an all-time minimum for spring. It felt like mid-summer.

The dry roads meant we could go driving on paths that are usually too muddy or flooded -- and as we were out driving, we saw a black bear! He lumbered along ahead of us for quite a ways along the road before crashing his way into the forest. Fortunately we were several miles from the cabins at that point. Right next to the cabins all we saw were hummingbirds, eagles, woodpeckers, loons, ducks, and a little red squirrel!

Oh, and the two little crawdads I caught by hand as we cavorted in the shallows right off the pier. And the leech I brushed off my foot. Rose was wary of the muck and rocks in the lake, but Joy could have played all day. She splashed and splashed...

... and climbed the pier and jumped back in, over and over.

She also figured out how to "swim" by walking on her hands in the shallow water, pulling her body along behind.

All that exercise could work up quite a thirst. One meal Joy was sitting next to me and reached over toward my share with a big "more"! The most likely desirables were the beverages -- a tumbler of milk and a bottle of beer. I poured her a little glass of milk, but she's been on an anti-milk kick lately and pushed it away after one sip. The comment came from across the table -- "Hey, maybe she wants your beer!" And from Joy, the explosive echo: "BEE!"

One of the great pleasures of the lake vacation is the photography. Rose now uses the old digital camera we got back when she was six months old:

She's learning to identify wildflowers as well as capture them in pixels. Here's a pink ladyslipper:

And I found and photographed a nodding trillium:

Ah, but I haven't yet shared the biggest adventure of all. Splashing by the shore was fun, but the real action involved the pontoon boat (thank you Uncle Marathon, and Uncle DO who couldn't be there this time!)

Take the boat out on the lake, anchor in about 20 feet of water, tighten up the girls' life-vests, and throw 'em overboard! OK, not really. We threatened to do it to Rose, but she shrieked and insisted on climbing gently down the ladder. Joy wouldn't have minded -- any way into the water was fine. Uncle Marathon was eager to take the plunge as well...

One one such swimming excursion, we were anchored a ways out in front of the cabin, about half-way between the pier and the eagle's nest. GrampaK had stayed behind at the cabin to take it easy. We were glad that he was in good enough health to come to the lake in the first place, but swimming wasn't part of that package. So the rest of us were out with the boat, just getting started, when suddenly GrampaK's voice came rolling out over the water, calling Uncle Marathon by name. And then these words, urgent and chilling:
Come. Home. Come home now!

And then silence.

[to be continued]