Potty time

Jasmine is trying, really. She loves going to the potty, and especially getting everyone to applaud when she uses the toilet instead of her diaper. But it's a work in progress.

Today she was watching a show when I heard her pulling off her clothes. This is the signal for potty time (or maybe a costume change, especially if she goes running for her bedroom instead of the toilet). I encouraged her and helped her to the bathroom, got the special seat in place and sat her down.

Then, nothing. It's not performance anxiety. Sometimes she needs a minute, but generally she's quick to go when she really needs to.

"Are you going potty?" I asked in that tone of breathless anticipation parents use when dreaming of a diaper-free life.

No response. "Jasmine, are you going to pee in the toilet?"

Still quiet. We stayed there, her poised on the throne, me looking encouraging, I hope.

"Jasmine, is pee-pee going to come out?"

She looked up at me a little sadly. "No, pee-pee is at home."

Parental Disabilities

There are several disabilities that are unique to care-giving. I think we should lobby for equal coverage under the law. Some examples:

Shepherd's Crook Neck: caused by constantly swiveling your head when trying to keep track of multiple children in a busy playground or store.

Baby-Bounce Knee: from bouncing the fuss out of infants night after night.

Joiner Elbow: caused the first time a parent tries to lay down on the floor the way a kid does to watch TV. Sometimes fatal.

Tug-Along Shoulder: trauma of the joints due to constantly having one arm swept back while walking, due to holding hands with a child who wants to examine every pebble, twig and bug on the path.

Lullaby Back: walking and swaying, the classic cure for all ills, turns into a pain in the lumbar with even the tiniest infant, when it's done night after night.

Fisher Price Ankle: when all those active, engaging toys conspire to trap a parent's foot, often while trying to sneak out of a bedroom in the dark.

Shushed-out Throat: soreness or loss of voice due to trying to get a child to be quiet, following months of trying to get them to talk.

Angelic Moment Heart: the palpitations induced by that one bit of sweetness which causes a parent to forget the other ailments, temporarily.

I think we should move for federal coverage of the above and other maladies, in parallel with the ADA and other legislation. Afflicted parents should be given tax breaks for massages, subsidized baby sitting and a mandatory ten minutes of quiet after dinner.

Goodness

Jasmine and I were at the grocery store, some while back. She was riding in the kiddie seat, her back to the aisle we roamed.

Perhaps I was talking to her, or otherwise distracted from my driving. I ran the cart into a pole quite suddenly with a good, metallic crash, startling us both. "My goodness!" I said to her, and smiled over our mutual start.

Jasmine was (and is) a parrot for short expressions and emphatic words. "My goodness!" she repeated. I turned the cart and maneuvered us around the pole, pointing it out as I went by. "That's what I crashed into," I explained to her, and she reached over to touch it curiously, then sat back again.

"Bye bye, goodness," she said as pole receded from view.

Stores

Ever since a recent trip to the shoe store, Jasmine has been fixated. I think she realized that there must be a store out there for every desire.

"Can we go to the dress store?" You have plenty of dresses, Jasmine.

"Can we go to the cookie store?" This actually means the grocery store, but you can tell what her favorite part is. (She only gets one.)

"Can we go to the movie store?" How about we just pick one off the shelf, from among the dozens.

"Can we go to the house store?" I haven't quite figured that one out yet. It's not like we've used up our house.

"Can we go to the coffee store?" Okay, I'm pretty agreeable there. (I only get one.)

"Can we go to the noodle store?" She's not a picky eater in general, but pasta is her favorite.

And so on, through the day. "Hey Jasmine, how about we go to the nap store?"

"No thanks!"

Generations of pretending

When I was a kid, summer was full of Play Like. Teachers and other ancients referred to the game as Let's Pretend, and maybe they really called it that. The phrase always sounded fake to me, like children imitating Winnie the Pooh dialog.

"Let's play like we're explorers and this is a jungle full of monsters." It's the same game, I'm sure, though subjects vary with generations just as terminology does.

The gas tank in the back yard served as a number of different vehicles, in spite of the fact that there was no way to get inside. "Let's play like this is our time machine." Sitting on top was fine. There was an important-looking valve that was steering wheel and everything else.

Once I became mobile, the swamp took over stage duties. It was a short bike-ride away down a big street, that had a golf course on one side and the swamp on the other, filled with tall slim trees and squishy mud and green-coated water. I'm not sure how big it was really, but we couldn't see across it, and didn't have to go in very far to lose sight of the road, so that was big enough. "Let's play like there are dinosaurs."

Now my kids are playing their version of Let's Pretend. Their terminology is borrowed from video games and cartoons. "Kai, do you want to play my game?" Rowan asks. That means he wants to set the stage for Kai and tell the first part of the story, but he'll join in as a character soon enough. They get out the swords and ray guns (never hurts to be versatile) and hunker down behind the couch.

"Rowan, after this let's play one of my games." Kai is already working out the next act. His game is usually Golden Saga, which has an ever-evolving plot that centers around a magic sword that he's found. He doesn't want to direct as much as Rowan does, and usually the fighting has much more to do with all his powers, or those of the sword.

Jasmine's game is simpler. It's called "Arrr!" She picks up a cutlass and starts chasing people, and they generally get the idea. Not much dialog but she's emphatic about it.

She's not old enough to join in the more complex forms of Let's Pretend, but she makes a great monster thrown in as a surprise. "Jasmine, go play with your brothers." I hand her the flashing blade and she holds it up high. "Arrr!"

Jasmine's kaleidoscope

While searching through the toy box, trying to find her favorite action figure (Captain Jack Sparrow. You call him a doll, go ahead.) Jasmine turned up an old kaleidoscope. I think it was from a gift bag from some birthday party or other that the boys have been to; a cheap thing, cardboard tube and plastic lenses, a few bits of something colorful and the angled mirrors at one end.

Jasmine held it up to her mouth and sang into it experimentally. It's a good guess, since we play with a few different microphones, and anything you can sing with is fun.

I told her no, look through it, and she chanced to get the right end up to her eye without covering the other end. She figured out how to change the colors around, and soon was trying it with different light sources in the room, the sunny window, her green blanket, the white cat.

I went back to what I was doing while she discovered the kaleidoscope. She came over to me a little later and held it up, since she loves to share her discoveries. I pointed it at the window and looked through, and said, "oh, I see something beautiful," meaning to hand it back to her.

"Hi," she replied promptly. "It's me, Jasmine!"

Albinism 1

Jasmine is a person with albinism, as the preferred term in the United States goes; in the United Kingdom she'd be an albino (pronounced al-BEE-no there) and the terminology varies likewise around the world. In her birthplace in China, albinism marked her as definitely not Chinese, which is too bad -- we want her to know her birth culture, but not pain her with it if they don't accept her.

Albinism is a rare disorder, affecting on average 1 in 17,000 humans. In some populations the incidence is as low as 1 in 20,000, while in some Central American native groups it is as high as 1 in 125. In-breeding has little to do with the occurrence of albinism, as the genes involved are quite widespread in the population; about one person in seventy carries them. Most people with albinism have normally pigmented parents.

There are multiple types of albinism, with several different genes involved. Think of the grand variation of skin, eye and hair color in humanity and you'll appreciate how many factors there are in the genetics of pigmentation. But roughly we can refer to oculocutaneous albinism for those who have no melanin (the dark pigment) in their eyes, skin and hair, and ocular albinism for those with normal skin and hair but lack melanin in their eyes. Jasmine is in the first group: she has beautiful white hair, pale pink skin and light blue eyes, as well as red lips that would make a starlet envious.

While the issues of skin and UV exposure are most obvious to someone looking at a person with albinism, it is the syndrome's effect on the eyes that has the greatest impact on lifestyle. We're not sure yet how well Jasmine's vision can be corrected, but a few things are clear. She often has trouble picking out details, and she can't track moving objects well. Eyeglasses meant to correct the sight of normally pigmented people are only partly effective for people with albinism, for reasons I'll go into in another post, but we're working with those and other vision aids.

We're just back from the NOAH conference in Las Vegas, and Jasmine had a great time there, meeting other kids and adults like her and their great families. It is a very welcoming community and we all enjoyed the trip.

Wikipedia's article on Albinism, where I started my education: http://en.wikipedia.org/wiki/Albinism

Vacation Cheerios

We were on our vacation over the weekend, the NOAH albinism conference in Las Vegas. More on that in other posts.

During a slow morning, Jasmine and I were the only ones awake, and she was getting hungry. I'd purchased a box of Cheerios as well as other supplies when we were getting settled in, so I poured a handful of little O's onto the table and told her to eat some.

She munched a couple, then looked up to me. "Can I have a bowl, Dad?"

I told her no, we didn't have a bowl here at the hotel.

She munched a few more, then looked up again. "Can I have milk, Dad?"

I told her no again. We just had Cheerios and a few other things. We'd get a better breakfast later.

She ate one more O, and then sighed as she looked up one last time. "Can we go home now? Go home and get a bowl?"

Well, we had a great time at the conference. And when we came home, she got a bowl of Cheerios, with milk. And a spoon!

Monster City

"Dad, would you like to play this new game I made?"

I told Rowan that I wanted to finish the last few pages of a book I was reading, and after that we would play. He arranged his supplies, a sharp pencil and some paper, and waited patiently.

"Well, first you choose your character," he explained, while he drew. There was a box on top, with a scary cave and a bat in it, but that wasn't a choice for character, that was just the background. He also put the titles in, and we worked on the spelling a bit.

"Here's Boxo. His head is a box." Boxo had tentacles and things too, but with a head like that they don't call you Tentacles. "This is Hover Eye. His legs have eyes on the ends, and that's why he has to hover, so he doesn't walk on them." One of Rowan's previous alien creations had had this exact handicap. "And this is 4th." I liked that one, because his long ears and spindly legs looked like a firework caught mid-explosion, so I picked him.

Rowan got out a fresh page and drew a cave. "This is your home. It's a cave, with stalactites and stalagmites." I explained to him again which was which, and how he could remember the difference. He thought it was a good trick, using the 'c' and the 'g.' "Do you want to exit the cave?" It seemed like the only choice, so I agreed, and he drew in the dotted line trail.

The next page had a number of choices, including a mysterious place, a gift shop, and a sports arena. I'm one for mystery, so that's where we went, as shown by the dotted line. Another page.

Rowan drew up the cart surfing mini-game while I got Jasmine started on something else. There was a cart and a track, and there were buttons across the top of the page, each drawn in swiftly and exactly by Rowan and his ever-moving pencil. I decided that this was a Graphite User Interface, but he didn't get it. The buttons caused 4th to do various tricks on the track, and pretty soon I had accumulated 40 Monster Coins.

When we got to the gift shop, he admitted to me, "Monster City is a lot like the penguin game, only it's different because there are monsters." I said that was fine, and spent my money on a new pet, who I named George.

Rowan was making frequent trips to the pencil sharpener, and as he held the page, drew in locations and buttons and monsters, erased messages and so on his hands steadily became black. Then the front of his shirt and his nose. I suggested he take a break and wash hands, and then we played a new game, which was finding Rowan Clues in the form of black smudges around the house. That was a good game too.

I thanked Rowan for showing me the new game, and asked him if he'd like me to teach him how to make games like that on the computer, instead of on paper.

"No thanks. I'm tired of learning things."

Shepherd's hut

http://www.plankbridge.com/gallery.html

I'm going to be a shepherd on a hill,
with a hut that has an iron stove,
an old coffee pot, a briar pipe,
and a soulful guitar sitting in one corner,
that I don't play but looks nice.

I'll talk to people just twice a year, when I come to town,
except that I'll mostly nod instead of talking,
appearing wise in my silence.

I'll watch lambs grow and sheep fluff,
and there will be a ram who knows he's in charge,
except when the ewes don't let him.

I'll have two dogs that are fast and smart,
and they'll respect me because I let them do the work.

And when I'm old and it's too cold on the hill,
and I can't get myself back to town,
I'll write a love letter, and tuck it into the guitar strings,
so that everyone will wonder.

The strawberry patch

It's hot already in Colorado, but mornings are nice. I get up early and that's one bonus, an hour or so that's blissfully cool, followed by a couple of hours that feel like the change in seasons, warm breezes and the scents of plants. By the time my daughter and I got out into the yard it was past that, edging toward hot, but we didn't mind.

Our house sits below a hill, with tiers and walls holding it in place. The lower yard is the kids' play yard, and we're lucky if the grass grows. The middle yard has a big cherry tree, and if I keep an eye out I can get a few cherries off it before the birds have them all. The grass is thicker there, and there are lilacs and peonies, very sweet this time of year. It's the yard for sitting in the shade and relaxing.

Up at the top is the meadow. It wasn't planned that way, but after two years of dragging a mower and other equipment up there I gave up on it and said it would grow what it wanted. We'd planted strawberries and raspberries on one side, other things too but those took hold and prospered on their own. Strawberries are aggressive, with enough water they'll spread into most any ground, and it's been fun to see it spread from a few plants to a real strawberry patch.

Jasmine and I climbed up the hill, visiting each plant along the way. I tell her what each one is, who put it there or if it grew by itself (the lilacs and aspens are all volunteers). She says the name back to the plant and touches the leaves. I found a good cherry for her and she was surprised at how sour, but she likes them. Then up to the top, where we sat in the strawberry patch.

I could get religious about strawberries. They are proof of -- something. That evolution produces beauty and sweetness along with strength and power, my sensible brain says, and there's nothing wrong with feeling awe over that. They are secret treasures. Turn over the broad leaves of green and red, hunt through what remains after the birds and rabbits have been there, and then suddenly there's a perfect little strawberry. Maybe even a big one, a few times a year, but they all taste wonderful, warm from the sun, sour and sweet. A gift back to those who live there.

It got hot, so we came back down. There was a hose and water and squirting and squealing, and I'm smiling about that too, but mostly about strawberries.