Just look at that swingset smile.
On a "big-kid" swing.
Joy!
Wednesday, May 13, 2009
Special Exposure Wednesday
Just look at that swingset smile.
On a "big-kid" swing.
Joy!
Monday, May 11, 2009
Monday Numbers
Hey, Kia! Are you doing Monday Mum-mum-numbers this week?
Well, whether you are or not, I am!
- 94 - number of miles I've run since I started keeping count in February. Will hit 100 this week!
- 2 - number of times I've already had to raise my way-too-modest fundraising goal for Susan G. Komen Race for the Cure. You guys rock. Your new challenge - make me do it again!!
- 1 - number of bell concerts Saturday night.
- 2 - number of standing ovations (one for the full group, one for an awesome duet played by 2 of our members!)
- 3 - number of bells I got to ring simultaneously in ONE hand during a certain passage in Bach's Little Fugue
- 1 - mylar helium fish-balloon I brought home from the concert decorations for the girls.
- 100 - percent of her time that Joy spent playing with the balloon and its lovely stringy ribbon yesterday until we hid it away.
- 7 - handwritten coupons received from Rose yesterday for Mothers Day
- 2 - coupons I have already redeemed (hugs and a big ol' room-cleaning - yes, this mama is hard-core! I helped her with the room though.)
- 4 - weeks we technically have to test out the 7-Level-Communicator, a voice-recorded communication device that's a big step up from Joy's push-button.
- 1 - number of days it took Joy to figure out the new tool. Wow.
- 5 - number of times Joy went to jump in her bouncy castle with her playdate friend on Tuesday.
- 0 - level of enthusiasm she'd had for the bouncy castle last year when it was her big birthday present. This is a major improvement!
- 32 - number of pieces of sports equipment in the kit I got Friday from Special Olympics, for their Young Athletes family program that we'll be doing this summer at home.
- 3 - number of list-items in this post (at least) that deserve blog-posts of their own.
- 14 - cups of rhubarb that went into the deep freeze yesterday from our one prolific plant.
- 5 - names I'm aware of for the flowering bush that we planted yesterday: serviceberry, Juneberry, saskatoon, shadberry, Amelanchier.
- Gazillion - blossoms on the apple tree in our back yard.
Oh, and half a gazillion dandelions in the lawn to go with 'em. At least the yellow is bright and cheery against the green grass!
Update: Ooo, forgot an important one.
- 8 - number of months since Joy's last knock-down seizure, as of today. Woo hoo! (And, knock on wood!)
Sunday, May 10, 2009
Mother's Day, And A Special 5K
As I type, Rose and JoyDad are upstairs whipping up a breakfast for me that involves bacon and eggs, an unusual treat! I've heard Joy trying out several of her babbly-sounds, and one of them was the long-absent "ma-ma-ma"... now granted, it had rather an air of complaint about it, and was obviously not directed at me because I'm not even in the room. Still, it's in there. And a good day for me to hear it!
Another very cool Mother's Day tribute came from an unexpected source -- my sister-in-law Auntie Running-at-the-Mouth, who picked up a "running mom" meme and added some leisure-studies research findings and turned it into a lovely salute, both to her mother and to me. Thanks so much, RatM!
She mentions that I've got another 5K race coming up... I'd like to tell you about it, if I may.
On May 30, I'm going to be running in the Susan G. Komen Race for the Cure. As you probably know from the amazing pink-ribbon movement, this is a fund-raiser for breast-cancer research. I know all too many people who have had to battle breast cancer themselves, some of them mom-related figures in my life but also friends, other in-laws, a college roommate, way too many. The latest astonishing figure is that the lifetime breast cancer risk is one in eight women.
I'd like to give my readers the chance to help this race count for as much as possible toward funds for breast cancer research and support...
Please consider a visit to my fundraising page for this race and making a donation. [Update: event is over, link removed. Thanks, all!] There's no such thing as "too small" and the page doesn't display who gave how much, only a lovely total. Making every step count for as much as possible!
All good thoughts and prayers happily accepted too. And even though my own mother's journey involved a different form of cancer (renal cell carcinoma), maybe this can be for her too in a way.
In other news, I'm told that I've won a special Mother of the Year award. You have to see this to believe it. (Thanks, Rhemashope!)
P.S. I broke the 10-minute mile barrier on my 5K run yesterday, first time ever. Hoping to do even better at the Race for the Cure!
Another very cool Mother's Day tribute came from an unexpected source -- my sister-in-law Auntie Running-at-the-Mouth, who picked up a "running mom" meme and added some leisure-studies research findings and turned it into a lovely salute, both to her mother and to me. Thanks so much, RatM!
She mentions that I've got another 5K race coming up... I'd like to tell you about it, if I may.
On May 30, I'm going to be running in the Susan G. Komen Race for the Cure. As you probably know from the amazing pink-ribbon movement, this is a fund-raiser for breast-cancer research. I know all too many people who have had to battle breast cancer themselves, some of them mom-related figures in my life but also friends, other in-laws, a college roommate, way too many. The latest astonishing figure is that the lifetime breast cancer risk is one in eight women.
I'd like to give my readers the chance to help this race count for as much as possible toward funds for breast cancer research and support...
Please consider a visit to my fundraising page for this race and making a donation. [Update: event is over, link removed. Thanks, all!] There's no such thing as "too small" and the page doesn't display who gave how much, only a lovely total. Making every step count for as much as possible!
All good thoughts and prayers happily accepted too. And even though my own mother's journey involved a different form of cancer (renal cell carcinoma), maybe this can be for her too in a way.
In other news, I'm told that I've won a special Mother of the Year award. You have to see this to believe it. (Thanks, Rhemashope!)
P.S. I broke the 10-minute mile barrier on my 5K run yesterday, first time ever. Hoping to do even better at the Race for the Cure!
Saturday, May 9, 2009
What About Me?
Per usual, my reading list has been heavy on the fiction lately, and all from the library. I don't hear the siren-song of autism-book addiction quite the way some of my blog-friends do! Every once in a while, though, I do get seduced into picking up an autism-related book. And then I learn interesting things. And then I have to do a book report, 'cause I report out on everything else autism-related around here...
Anyway. The recent read was What About Me? Growing Up with a Developmentally Disabled Sibling, by Bryna Siegel and Stuart Silverstein. Siegel is a developmental psychologist (and imaginary BFF of Mama Mara) who has written a number of books on autism; Silverstein is a pediatrician and the older brother of a sibling with autism. So even though it's not directly billed as being about sibs with autism, that seems to be the jumping-off point.
So I found myself first gulping and eventually chuckling my way through the second chapter, about the research on sibs of developmentally disabled kids. I had no idea that we (and Rose) were so much behind the 8-ball. Consider:
Add to that the research that families who planned their children carefully (me, plan? ME?) tend to feel a greater sense of unfairness when a child turns up with a disability, and that younger couples are often better able to cope than older couples (40-cough isn't OLD, is it?), and that authoritarian parents tend to have an easier time providing the sense of structure that a disabled child (especially with autism) may need... Well, we're just a mess waiting to happen, I guess. At least we're not single-parenting ("Without doubt, the most difficult situation to cope with is parenting a disabled child as a single parent") -- my hat is off to my blogfriends who ARE.
Except that, I actually think we're doing OK. So far anyway.
Rose seems like an exceptionally healthy kiddo.
I did pick up some interesting things to watch out for. The fundamental question, I think, is whether we're [un-necessarily] requiring things of Rose that we wouldn't require if Joy didn't have autism. We'll need to be careful about asking her to do too much Joy-care; right now it sometimes takes the form of "watch your sister for a minute while I go put the laundry in, OK?" Definitely something to keep to a minimum.
The other one I catch myself on is a little more insidious. It has to do with the fact that Joy is likely to do damage to Rose's stuff that gets left unattended in the open. So if Rose leaves a bunch of markers and her artwork all over the kitchen table and walks away, Joy is likely to grab the markers and crumple the paper. Should Rose have put the project away? Well, yeah. But most kids don't get such intense natural consequences for that kind of omission. We need to be sure we're sympathizing appropriately for all the wreckage, rather than solely reinforcing the lesson of, "Well, that's what happens when you leave your stuff where Joy can get it."
I also liked some of the general strategies that the book offered: Things like using humor to reframe sticky situations with Joy, giving Rose alone-time with parents, and being sure to give Rose her fair share of praise for accomplishments (seeing as how Joy gets such lavish praise for little things like putting on her own bib or saying even a single word).
The book also made an interesting comparison with the adult-children-of-alcoholics situation. The comparison has kind of an uncomfortable feeling about it, and as the authors point out, Twelve-Stepping obviously does not apply! but I did find myself nodding at a couple of the points. Both neurotypical sibs and COAs find themselves in situations of high responsibility, having to give up the right to be childlike at an early age, placing their own needs second, being unwilling to bring friends home to play, keeping a lot of bad feelings inside... very interesting.
Next up: Horizon (The Sharing Knife, Book 4) by Lois McMaster Bujold. Back to the fiction for me, friends!
Anyway. The recent read was What About Me? Growing Up with a Developmentally Disabled Sibling, by Bryna Siegel and Stuart Silverstein. Siegel is a developmental psychologist (and imaginary BFF of Mama Mara) who has written a number of books on autism; Silverstein is a pediatrician and the older brother of a sibling with autism. So even though it's not directly billed as being about sibs with autism, that seems to be the jumping-off point.
So I found myself first gulping and eventually chuckling my way through the second chapter, about the research on sibs of developmentally disabled kids. I had no idea that we (and Rose) were so much behind the 8-ball. Consider:
- Research suggests that having a handicapped sibling is consistently more difficult for older sisters (p.28)
- Overall, girls tend to be more often negatively affected than boys (p.29)
- Adjustment can be more difficult for same-sex sibs (p.30)
- Sibs closer in age to the disabled sib tend to experience more distress (p.30)
- It helps to have a larger family - more sibs to share the experience/load (p.31)
Add to that the research that families who planned their children carefully (me, plan? ME?) tend to feel a greater sense of unfairness when a child turns up with a disability, and that younger couples are often better able to cope than older couples (40-cough isn't OLD, is it?), and that authoritarian parents tend to have an easier time providing the sense of structure that a disabled child (especially with autism) may need... Well, we're just a mess waiting to happen, I guess. At least we're not single-parenting ("Without doubt, the most difficult situation to cope with is parenting a disabled child as a single parent") -- my hat is off to my blogfriends who ARE.
Except that, I actually think we're doing OK. So far anyway.
Rose seems like an exceptionally healthy kiddo.
I did pick up some interesting things to watch out for. The fundamental question, I think, is whether we're [un-necessarily] requiring things of Rose that we wouldn't require if Joy didn't have autism. We'll need to be careful about asking her to do too much Joy-care; right now it sometimes takes the form of "watch your sister for a minute while I go put the laundry in, OK?" Definitely something to keep to a minimum.
The other one I catch myself on is a little more insidious. It has to do with the fact that Joy is likely to do damage to Rose's stuff that gets left unattended in the open. So if Rose leaves a bunch of markers and her artwork all over the kitchen table and walks away, Joy is likely to grab the markers and crumple the paper. Should Rose have put the project away? Well, yeah. But most kids don't get such intense natural consequences for that kind of omission. We need to be sure we're sympathizing appropriately for all the wreckage, rather than solely reinforcing the lesson of, "Well, that's what happens when you leave your stuff where Joy can get it."
I also liked some of the general strategies that the book offered: Things like using humor to reframe sticky situations with Joy, giving Rose alone-time with parents, and being sure to give Rose her fair share of praise for accomplishments (seeing as how Joy gets such lavish praise for little things like putting on her own bib or saying even a single word).
The book also made an interesting comparison with the adult-children-of-alcoholics situation. The comparison has kind of an uncomfortable feeling about it, and as the authors point out, Twelve-Stepping obviously does not apply! but I did find myself nodding at a couple of the points. Both neurotypical sibs and COAs find themselves in situations of high responsibility, having to give up the right to be childlike at an early age, placing their own needs second, being unwilling to bring friends home to play, keeping a lot of bad feelings inside... very interesting.
Next up: Horizon (The Sharing Knife, Book 4) by Lois McMaster Bujold. Back to the fiction for me, friends!
Wednesday, May 6, 2009
Photo Wednesday: Buzzcut Drawback
Here's the one big reason that Joy's buzzcut is probably not a long-term "look" for her:
It's the scar from her nevus-removal. When her hair is longer, the scar hides nicely. With the buzz, it's as exposed as can be.
Rather a bummer, really. The short cut is so cute on her, otherwise! And SO easy to care for.
So as not to end the post on a down note, here's a reason to be cheerful: the tulips in our front flowerbed.
It's the scar from her nevus-removal. When her hair is longer, the scar hides nicely. With the buzz, it's as exposed as can be.
Rather a bummer, really. The short cut is so cute on her, otherwise! And SO easy to care for.
So as not to end the post on a down note, here's a reason to be cheerful: the tulips in our front flowerbed.
Tuesday, May 5, 2009
Random Tuesday Thoughts
A belated May-basket to Keely at The UnMom for running this Random Tuesday Thoughts operation, and giving me a reason for randomness!
- Joy wants "more". She's been signing it for food, bubble machine, swinging, all sorts of goodies and activities. Way to go, girl!
- Rose wants more too. More time playing with Mama.
- Mama wants more too. More independence on the part of Rose, especially during handbell concert season.
- Sunday's concert went awesomely well. I love it when we finish a piece and the audience gives a little gasp/sigh after the last note and before the applause...
- We debuted new royal-blue floor-length dresses for the show, most with plunging necklines, and managed not to have a single "wardrobe malfunction"!
- When Joy has a "wardrobe malfunction" it usually has to do with a leaky diaper.
- Why is it that Joy always seems to wake up in the wee small hours on Tuesday mornings, one of her busiest days of the week?
- I was up early today too, but it was intentional. Got a nice pre-dawn run in. Lots of birds and blossoms and bunnies out there.
- The strawberry patch is starting to bloom, now that JoyDad has fenced the bunnies out. Can't wait till the garden we planted this weekend starts to sprout as well!
- Did you know that violets are edible? Tastes kind of lettuce-like and makes a lovely unusual contrast to a salad of greens. Rose has loved picking flowers for dinner. Joy eats them on her plate, but hasn't figured out to pick them out of the yard to eat. Which is just as well, I suppose.
- Happy Cinco de Mayo!
Monday, May 4, 2009
Patterns at the Park
I had a fine evening at the park with Joy and Rose the other day. It had been a couple of weeks since the elements converged such that we could all go -- weather and absence of prior commitments on all sides. It was a different experience than the last trip!
Difference #1 - Rose rode her bike. Like, on the way there! When we went to the park to learn to ride, we loaded up the bike into the car and drove to the park. Now she can ride almost the whole way, and only has to walk her bike on one especially steep hill.
Difference #2 - Joy didn't dash. Last time we went, she wandered afield, and I had a big long run at one point, ending with a dramatic swoop whereby I caught her by the coat just as she was about to jump into the water in the ditch! This time, she spent the entire time in the gravel area.
Difference #3 - The gravel area didn't enter Joy's mouth. Last time, particularly near the end of our stay, I felt like I was digging gravel out of her mouth every time I turned around. This time? Not at all.
She did spend lots of time gravel-stimming, which felt very familiar. One new thing was shuffling her feet through the gravel on her way to the swings or play structure. I'm reminded of how last year she started the spring season being extremely stimmy at the park, not wanting to do anything else. Then over the course of the park season, she got gradually more interested in things other than the stimmies. Wondering if we're already seeing that pattern repeat.
Difference #4 - Joy wanted to play on both the big kid swings and the toddler swing. Last time she only wanted the toddler swing, though I tried to interest her in the big-kid swing, the kind with the flexible seat between two chains. She was having none of it, deliberately sliding off even before I could get her swinging. This time she gravitated toward the big-kid swing herself, got into position to hike herself up to sit on it, and then looked at me for help and signed "more" when she didn't quite make it! She went back to the swings several times, sometimes requesting "more" for my help, sometimes draping herself over the swing on her tummy and propelling herself. She even at one point tried to do the tummy-drape thing on the toddler swing, which didn't work quite so well. I liked seeing the experimenting, though. And the signing -- how glorious to see the signing.
Well, Rose would probably tell me (since they worked hard on defining patterns in kindergarten) that you can't call it a pattern until/unless it starts repeating. We shall see. Whatever else it was, though, it was a lovely evening at the park.
Difference #1 - Rose rode her bike. Like, on the way there! When we went to the park to learn to ride, we loaded up the bike into the car and drove to the park. Now she can ride almost the whole way, and only has to walk her bike on one especially steep hill.
Difference #2 - Joy didn't dash. Last time we went, she wandered afield, and I had a big long run at one point, ending with a dramatic swoop whereby I caught her by the coat just as she was about to jump into the water in the ditch! This time, she spent the entire time in the gravel area.
Difference #3 - The gravel area didn't enter Joy's mouth. Last time, particularly near the end of our stay, I felt like I was digging gravel out of her mouth every time I turned around. This time? Not at all.
She did spend lots of time gravel-stimming, which felt very familiar. One new thing was shuffling her feet through the gravel on her way to the swings or play structure. I'm reminded of how last year she started the spring season being extremely stimmy at the park, not wanting to do anything else. Then over the course of the park season, she got gradually more interested in things other than the stimmies. Wondering if we're already seeing that pattern repeat.
Difference #4 - Joy wanted to play on both the big kid swings and the toddler swing. Last time she only wanted the toddler swing, though I tried to interest her in the big-kid swing, the kind with the flexible seat between two chains. She was having none of it, deliberately sliding off even before I could get her swinging. This time she gravitated toward the big-kid swing herself, got into position to hike herself up to sit on it, and then looked at me for help and signed "more" when she didn't quite make it! She went back to the swings several times, sometimes requesting "more" for my help, sometimes draping herself over the swing on her tummy and propelling herself. She even at one point tried to do the tummy-drape thing on the toddler swing, which didn't work quite so well. I liked seeing the experimenting, though. And the signing -- how glorious to see the signing.
Well, Rose would probably tell me (since they worked hard on defining patterns in kindergarten) that you can't call it a pattern until/unless it starts repeating. We shall see. Whatever else it was, though, it was a lovely evening at the park.
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