We now return to our originally-scheduled programming, which involves the enumeration of blessings.
First off, thanks to everyone who's been reading and commenting and sending prayers and positive thoughts about our Rats'm Frats'm Blankety-Blank Seizures. We're pretty clearly back in seizure-land at this point, going at the rate of one knock-down per day with several disorienting single-jerks (plus the ongoing internal electrical storm that has been present for the past two years at least). Good news is, there was only the one big blue-lipper so far. The subsequent ones have been about 10 seconds in duration and have been much easier to shake off.
Then there's the awesome meat-space community (so to speak)!
We've got such a wonderful network through our church. The mom with whom we used to daycare-swap has coordinated for us a full roster of volunteers to accompany Joy one-on-one at Sunday School and nursery, plus give me a few minutes before and after worship for conversation. There are enough volunteers that nobody needs to step in more than once a month, and Joy is accepting enough of a wide range of helpers that this rotating whirl doesn't seem to faze her.
There's also a strong neighborhood network. On Friday I needed to go to Rose's end-of-summer-camp party, which conflicted with one of Joy's home therapy sessions, and there needs to be a parent or other adult in the house for the therapy to take place. One phone call next door, and the neighbor on the other side of the fence (who brought the potato salad to the fence party) was all lined up to come on over.
I was able this week to line up two other neighborhood moms with Rose-aged kids to take on the regular task of getting Rose home from school on Tuesdays and Thursdays, because that too conflicts with Joy's therapy hours.
On top of that, I've got a list of eight families (spanning neighborhood and church) willing to be called on short notice if we are in need of a bit of respite Joy-care, plus three other families who didn't think Joy-care was up their alley but would help by bringing a meal if need be.
And then there's the dear friend who brought her daughter over for a spur-of-the-moment playdate Friday night after the end-of-summer-camp party, and brought wine as well so she & I could each have a glass as the summer sun went down...
I could list more, but that gives you a flavor for it! Community makes Joy's world go 'round. We are so very blessed.
Sunday, August 31, 2008
Thursday, August 28, 2008
Rats'm Frats'm Blankety-Blank Seizures!
Just when I get to counting my blessings...
Joy had such a nice string going. The last knock-down seizure we'd seen was on July 31. That meant that we were closing in on 4 weeks, almost a month. When we hit a month, we were going to celebrate.
And then this morning, we had (in the words of Mama Mara) a "big blue-lipper." Fortunately Joy was in a stroller, so she didn't fall. But she did go stiff. And quiver. And stop breathing. And change color. And drool. And then felt simply wretched for the next hour or so.
Dagnabbit. There goes our party.
Well, still trying to count blessings here... last time we had an almost-month-long streak without any knock-down seizures, she then had SEVEN big blue-lippers on the day that the streak broke. Here's hoping that today's count remains at ONE.
Joy had such a nice string going. The last knock-down seizure we'd seen was on July 31. That meant that we were closing in on 4 weeks, almost a month. When we hit a month, we were going to celebrate.
And then this morning, we had (in the words of Mama Mara) a "big blue-lipper." Fortunately Joy was in a stroller, so she didn't fall. But she did go stiff. And quiver. And stop breathing. And change color. And drool. And then felt simply wretched for the next hour or so.
Dagnabbit. There goes our party.
Well, still trying to count blessings here... last time we had an almost-month-long streak without any knock-down seizures, she then had SEVEN big blue-lippers on the day that the streak broke. Here's hoping that today's count remains at ONE.
Wednesday, August 27, 2008
In Praise of Awesome Daycare
I've mentioned Joy's daycare before, and officially dubbed her daycare provider "Lynda," after Lynda Carter of Wonder Woman fame. Today I'd like to let you know why we, and Joy, are so incredibly blessed in her daycare situation.
I work a part-time schedule. For the first two years of Joy's life, we had a daycare-swap arrangement with another family from church, who had a little guy only two days older than Joy. But after two years of swapping, the other family was looking to reproduce again and found another arrangement that would better suit an expanding family, so we needed to find something else. By that point, we were well aware that Joy was "behind" developmentally, and she'd been getting Birth-to-Three services for several months. We knew that we'd need something special, and we found it from a personal referral from a Birth-to-Three therapist, who had heard about what Lynda had put together in her home.
Lynda mixes things up with her daycare kids in two ways. She deliberately assembles a mixed-age group of children, regularly taking in new babies who then grow into years-long clients! And she deliberately puts together a mix of special-needs and neurotypical kids. Right now the mix is about half and half.
This daycare is a model of inclusion on a day-to-day basis, and she makes it look so easy. It really hit me the other summer one time when I dropped Joy off late and everyone was already out in the front yard, playing in a little wading pool. Lynda had the one girl with the most intense challenges (non-verbal, not very mobile, among other things) sitting on the bench of a little picnic table pulled up to the edge of the pool, with her feet in the water. Lynda was playfully pouring water over this girl's legs and feet, to a response of big smiles, while simultaneously tracking and interacting in turn with the other kids around the pool and in and out of the water, and managed to seamlessly welcome me and Joy as we arrived.
Lynda's place is therapy-central some days, with itinerant therapists from Birth-to-Three and the school district in and out to work with their various kiddie-clients. Joy's summer speech therapist was only there once this summer, working mostly out of our home, but her response to just one session at Lynda's was "This place is therapy heaven!" Lynda is eager to learn from the therapists and also make suggestions -- she's not a therapist by background, but has practically made herself into one by observation and continuing education.
Oh, and did I mention the reports? Every day during nap-time, Lynda writes up three or four paragraphs on each kid, with detailed specifics on their activities. Most days those messages are e-mailed to a private online group we have set up for Joy-reports, so JoyDad and I get to see them at work (only on the busiest days do they get handwritten). We've got the school-district therapists turning in their reports that way too, and Lynda's are easily the equal of theirs.
To top it all off, this week Lynda let me trade Joy-days because of vacation and holiday. I ended up having a day at home all to myself, though I did share it with JoyDad, swooped down on his workplace and whisked him off to a restaurant lunch.
Yes, she does read this blog -- thanks so VERY much, Lynda / Wonder Woman!
I work a part-time schedule. For the first two years of Joy's life, we had a daycare-swap arrangement with another family from church, who had a little guy only two days older than Joy. But after two years of swapping, the other family was looking to reproduce again and found another arrangement that would better suit an expanding family, so we needed to find something else. By that point, we were well aware that Joy was "behind" developmentally, and she'd been getting Birth-to-Three services for several months. We knew that we'd need something special, and we found it from a personal referral from a Birth-to-Three therapist, who had heard about what Lynda had put together in her home.
Lynda mixes things up with her daycare kids in two ways. She deliberately assembles a mixed-age group of children, regularly taking in new babies who then grow into years-long clients! And she deliberately puts together a mix of special-needs and neurotypical kids. Right now the mix is about half and half.
This daycare is a model of inclusion on a day-to-day basis, and she makes it look so easy. It really hit me the other summer one time when I dropped Joy off late and everyone was already out in the front yard, playing in a little wading pool. Lynda had the one girl with the most intense challenges (non-verbal, not very mobile, among other things) sitting on the bench of a little picnic table pulled up to the edge of the pool, with her feet in the water. Lynda was playfully pouring water over this girl's legs and feet, to a response of big smiles, while simultaneously tracking and interacting in turn with the other kids around the pool and in and out of the water, and managed to seamlessly welcome me and Joy as we arrived.
Lynda's place is therapy-central some days, with itinerant therapists from Birth-to-Three and the school district in and out to work with their various kiddie-clients. Joy's summer speech therapist was only there once this summer, working mostly out of our home, but her response to just one session at Lynda's was "This place is therapy heaven!" Lynda is eager to learn from the therapists and also make suggestions -- she's not a therapist by background, but has practically made herself into one by observation and continuing education.
Oh, and did I mention the reports? Every day during nap-time, Lynda writes up three or four paragraphs on each kid, with detailed specifics on their activities. Most days those messages are e-mailed to a private online group we have set up for Joy-reports, so JoyDad and I get to see them at work (only on the busiest days do they get handwritten). We've got the school-district therapists turning in their reports that way too, and Lynda's are easily the equal of theirs.
To top it all off, this week Lynda let me trade Joy-days because of vacation and holiday. I ended up having a day at home all to myself, though I did share it with JoyDad, swooped down on his workplace and whisked him off to a restaurant lunch.
Yes, she does read this blog -- thanks so VERY much, Lynda / Wonder Woman!
Monday, August 25, 2008
Christmas in August
You could potentially walk into our house any day of the year, look over at what's playing on DVD, and think Christmas. That's because Joy's very favorite videos are Baby Einsteins, and one of the most favorite of the favorite is Baby Santa. These magical videos are about the only thing that can keep Joy somewhat occupied for a span of more than a minute or two without direct intense supervision. So we've heard the Baby Einstein Orchestra do Jingle Bells so often we could sing it in our sleep.But wait, there's more. This year, Christmas in August also means that I washed my last load of cloth diapers this weekend. After six years of stinky launderings, I am SO done. Wahoo! Joy hasn't been the slightest bit interested in potty training. [Clarification edit: and she still isn't. No, we are not done with diapers per se. We are not even started being done with diapers.] However, the Medical Assistance under which she receives her intensive autism therapy will also pay for diapers, once a suitably-disabled child turns four. We've gotten through the prior authorization paperwork hoops now, and the first shipment of diapers arrived this week, directly to our door. Talk about your early Christmas presents! I am done saving the environment via cloth diapers, virtuous as it was. It feels great to be saving mama a little bit now.
Last but not least, I also started playing Christmas music this week. I ring handbells with a semi-professional community group, and Saturday was our kickoff rehearsal for this year's Christmas concerts. It's a little incongruous to have Christmas bells ringing in my head already before school starts, but I do love to have that outside interest and sneak away to ring bells with my colleagues! Here's an MP3 clip of "Sleigh Ride" to give you a sense of how we make holiday celebration with handbells. Merry, merry!
Saturday, August 23, 2008
Update to the Craniosacral Files (Woo, Me?)
Forthwith, the promised update on Joy's Friday CST session.
Joy's had a very "stimmy" week, on the whole, and yesterday was no exception. Our cranio-sacral practitioner, H., was running a little bit late when we arrived, but showed us into the therapy room so Joy could play. Joy quickly pulled out a whole bunch of stimmy toys (kooshes, bristle blocks) and distributed them around the room, bouncing from one toy to the other like a ping-pong ball and squishing them between her hands and chewing on them. She's got a very intense interaction with her stim-items, in which she tenses up her shoulders and face and jaw and vocalizes through her teeth: "eeee" or "gooo". We've been concerned about it and hoping that cranio-sacral can provide some assistance.
When H. came into the room, Joy greeted her with a big smile but continued to go at it with the toys. H. began to follow her around and try to take hold of her, and Joy played it almost like a chase game. She didn't mind when H. "got" her but she did try to struggle away between the giggles. She never did really accept the holds this time, though perhaps was somewhat more relaxed toward the end.
First H. worked on Joy's belly, saying that her diaphragm was tight and it could be making it hard to catch a good deep breath. She again did the trick of counting as she pressed her fingers up toward Joy's diaphragm, so that Joy would have the sense that an endpoint would be coming. Joy thought they were playing another game, and every time H. got to "1, 2, 3" Joy would chime in with a big "Go!"
Next was the head. H. said that Joy's head was very tight and she was holding a lot of heat in her cranium. Joy has been running pretty hot on and off for the last few weeks, and the tension thing makes at least some sense because of what Joy does during the stimming (though is it cause, or effect?) H. spoke of two potential reasons behind the stimming. One would be a response to the tightness, as when you have a headache and you put her hands to your head as if pushing on the outside will help the internal pressure. Second would be a sensory-need attempt to get a biochemical burst akin to a runner's high -- which could be more efficiently provided by heavy-work such as jumping, crawling, crashing, pulling.
Anyway, H. spent the rest of the session working on Joy's head and upper chest, occasionally checking the "rhythms" by holding her legs. She said she did manage to release a lot of heat and tension in the head, that she'd gotten the rhythms stronger and more even, and that Joy's neck (where she'd worked last time) was still in good shape. I asked what to look for in the coming days, and she said to look for a reduction in the duration and intensity of the stimminess.
Joy remained intense with her stims through the whole session, through the day and the evening as well.
H. did give two particularly helpful pieces of advice. One was the advice to try and guide the stimming behavior into something more heavy-work related, games of jumping or running or trying to pull away. The other was that she identified that Joy was dehydrated, which impressed me because in fact we've had some trouble getting enough liquids into her lately. H. tied the dehydration into the heat-in-the-cranium thing. Whatever one thinks of that particular link, we do need to get Joy to drink more. So both of those were things that it was helpful to hear.
I'll be taking Joy back at least one more time, in another two weeks. Unfortunately I can't send JoyDad, because there weren't any Saturday appointments! Oh well.
Meanwhile, speaking of JoyDad, one of his colleagues forwarded him an interesting e-mail announcement: a CST training session for laypersons.
Sigh. I'm not feeling nearly as hopeful about this craniosacral thing as I was.
Joy's had a very "stimmy" week, on the whole, and yesterday was no exception. Our cranio-sacral practitioner, H., was running a little bit late when we arrived, but showed us into the therapy room so Joy could play. Joy quickly pulled out a whole bunch of stimmy toys (kooshes, bristle blocks) and distributed them around the room, bouncing from one toy to the other like a ping-pong ball and squishing them between her hands and chewing on them. She's got a very intense interaction with her stim-items, in which she tenses up her shoulders and face and jaw and vocalizes through her teeth: "eeee" or "gooo". We've been concerned about it and hoping that cranio-sacral can provide some assistance.
When H. came into the room, Joy greeted her with a big smile but continued to go at it with the toys. H. began to follow her around and try to take hold of her, and Joy played it almost like a chase game. She didn't mind when H. "got" her but she did try to struggle away between the giggles. She never did really accept the holds this time, though perhaps was somewhat more relaxed toward the end.
First H. worked on Joy's belly, saying that her diaphragm was tight and it could be making it hard to catch a good deep breath. She again did the trick of counting as she pressed her fingers up toward Joy's diaphragm, so that Joy would have the sense that an endpoint would be coming. Joy thought they were playing another game, and every time H. got to "1, 2, 3" Joy would chime in with a big "Go!"
Next was the head. H. said that Joy's head was very tight and she was holding a lot of heat in her cranium. Joy has been running pretty hot on and off for the last few weeks, and the tension thing makes at least some sense because of what Joy does during the stimming (though is it cause, or effect?) H. spoke of two potential reasons behind the stimming. One would be a response to the tightness, as when you have a headache and you put her hands to your head as if pushing on the outside will help the internal pressure. Second would be a sensory-need attempt to get a biochemical burst akin to a runner's high -- which could be more efficiently provided by heavy-work such as jumping, crawling, crashing, pulling.
Anyway, H. spent the rest of the session working on Joy's head and upper chest, occasionally checking the "rhythms" by holding her legs. She said she did manage to release a lot of heat and tension in the head, that she'd gotten the rhythms stronger and more even, and that Joy's neck (where she'd worked last time) was still in good shape. I asked what to look for in the coming days, and she said to look for a reduction in the duration and intensity of the stimminess.
Joy remained intense with her stims through the whole session, through the day and the evening as well.
H. did give two particularly helpful pieces of advice. One was the advice to try and guide the stimming behavior into something more heavy-work related, games of jumping or running or trying to pull away. The other was that she identified that Joy was dehydrated, which impressed me because in fact we've had some trouble getting enough liquids into her lately. H. tied the dehydration into the heat-in-the-cranium thing. Whatever one thinks of that particular link, we do need to get Joy to drink more. So both of those were things that it was helpful to hear.
I'll be taking Joy back at least one more time, in another two weeks. Unfortunately I can't send JoyDad, because there weren't any Saturday appointments! Oh well.
Meanwhile, speaking of JoyDad, one of his colleagues forwarded him an interesting e-mail announcement: a CST training session for laypersons.
This is a hands-on session which will teach techniques to relieve pain and promote relaxation by using basic CranioSacral Therapy techniques:So for slightly more than the cost of a single session with H. we could learn to do it ourselves, in three short hours! Or not. We're busy that evening anyway.
- Discover how to recognize the rhythm of the craniosacral system.
- Learn a basic CranioSacral Therapy techniques that you can perform yourself.
- Experience a sense of control over your innate ability to provide healing energy to others and yourself.
- Gain a greater understanding of your role in your own health and well being.
Sigh. I'm not feeling nearly as hopeful about this craniosacral thing as I was.
Friday, August 22, 2008
Joy's Swimming Report Card
She graduated! Oh my goodness, my baby graduated!
Last night at swimming class, we picked up the above report card, and discovered to our delight that Joy had been unconditionally promoted to Level 2, after the standard single session in Level 1. As the Level 1 brochure says, "A child usually only stays in Level 1 class for one session." We're so not used to operating on a neurotypical timetable...
Here's the note from the teacher:
A close-up of the Level 1 skills report:
By the way, Rose -- in her 4th summer of lessons -- has now not only learned to swim the length of a single breath, but this week started to attempt to come back up for a breath and keep going.
Joy gets another session starting in September, Rose will continue piano lessons instead.
Onward to autumn!
Last night at swimming class, we picked up the above report card, and discovered to our delight that Joy had been unconditionally promoted to Level 2, after the standard single session in Level 1. As the Level 1 brochure says, "A child usually only stays in Level 1 class for one session." We're so not used to operating on a neurotypical timetable...
Here's the note from the teacher:
You have been doing an amazing job this session! Your jump-ins are looking great! Keep up the hard work!
A close-up of the Level 1 skills report:
- Submersions with Instructor - Mastered!
- Jump-ins with Assistance - Mastered! (really it's nearly without assistance)
- Backfloats with Assistance - Mastered!
- Comfortable on Platform - Mastered!
- No Tears - Mastered! (she nailed this one on the first day)
By the way, Rose -- in her 4th summer of lessons -- has now not only learned to swim the length of a single breath, but this week started to attempt to come back up for a breath and keep going.
Joy gets another session starting in September, Rose will continue piano lessons instead.
Onward to autumn!
Thursday, August 21, 2008
A Discouraging Word
The official song of the state where I was born has a refrain that goes like this:
A cowboy's earthly paradise! It'd be enough to make ya want to move back, if it weren't for the fact that really Kansas has about as many discouraging words as anywhere else. And, alas, the movie Tropic Thunder is playing in Kansas as well.
There's been a lot of editorial page ink and blogospheric bytes spilled over the protests from the special-needs community about the movie's use of the "R-word": retard. As I understand it, the context is an actor (played by Ben Stiller) playing a character with cognitive disabilities, and overplaying the "simple" factor of his "Simple Jack" for Oscar-pursuit purposes. The word "retard" is bandied about indiscriminately, leading to real-world concerns -- shared by me -- that one of the movie's ugly taglines may be heard on a lot of playgrounds this fall. I won't repeat it, but you can read about it if you care to.
I won't be seeing this movie, and wouldn't anyway because a) I see something like one theatre-movie per year if I'm lucky, and b) I don't "do" trash-mouth movies that pull their big laugh-lines out of the gutter, and I'm not just talking about the "R"-word anymore.
Instead, over the past several months I've been reading my way through a clever and highly entertaining science fiction series by Lois McMaster Bujold, featuring lead character Miles Vorkosigan. Miles is a nobleman on his home planet, in the line of succession to the emperorship. He is blindingly intelligent, a man of conscience, full of manic energy, apparently arrogant but battling inner bogeymen. He commands a fleet of space mercenaries, and has adventures, romantic and otherwise, all around the galaxy.
He's also just over four feet tall, with startlingly brittle bones and other physical frailties, the in-utero victim of a chemical attack on his mother before he was born. His home planet has a low tolerance for physical difference, to put it mildly. The "R-word" that gets used against Miles is "mutie," short for mutant.
Joy and I have not yet heard our own planet's discouraging epithets used against her. With any luck, we'll avoid it for some years longer. I'm not so naive, though, as to think that it isn't going to happen at some point.
Meanwhile, I shield myself against the day, rejoicing in Joy's accomplishments and entertaining myself with the successes of Miles Vorkosigan. Who needs the movies, anyway?
Home, home on the range
Where the deer and the antelope play
Where seldom is heard a discouraging word
And the skies are not cloudy all day!
A cowboy's earthly paradise! It'd be enough to make ya want to move back, if it weren't for the fact that really Kansas has about as many discouraging words as anywhere else. And, alas, the movie Tropic Thunder is playing in Kansas as well.
There's been a lot of editorial page ink and blogospheric bytes spilled over the protests from the special-needs community about the movie's use of the "R-word": retard. As I understand it, the context is an actor (played by Ben Stiller) playing a character with cognitive disabilities, and overplaying the "simple" factor of his "Simple Jack" for Oscar-pursuit purposes. The word "retard" is bandied about indiscriminately, leading to real-world concerns -- shared by me -- that one of the movie's ugly taglines may be heard on a lot of playgrounds this fall. I won't repeat it, but you can read about it if you care to.
I won't be seeing this movie, and wouldn't anyway because a) I see something like one theatre-movie per year if I'm lucky, and b) I don't "do" trash-mouth movies that pull their big laugh-lines out of the gutter, and I'm not just talking about the "R"-word anymore.
Instead, over the past several months I've been reading my way through a clever and highly entertaining science fiction series by Lois McMaster Bujold, featuring lead character Miles Vorkosigan. Miles is a nobleman on his home planet, in the line of succession to the emperorship. He is blindingly intelligent, a man of conscience, full of manic energy, apparently arrogant but battling inner bogeymen. He commands a fleet of space mercenaries, and has adventures, romantic and otherwise, all around the galaxy.
He's also just over four feet tall, with startlingly brittle bones and other physical frailties, the in-utero victim of a chemical attack on his mother before he was born. His home planet has a low tolerance for physical difference, to put it mildly. The "R-word" that gets used against Miles is "mutie," short for mutant.
Joy and I have not yet heard our own planet's discouraging epithets used against her. With any luck, we'll avoid it for some years longer. I'm not so naive, though, as to think that it isn't going to happen at some point.
Meanwhile, I shield myself against the day, rejoicing in Joy's accomplishments and entertaining myself with the successes of Miles Vorkosigan. Who needs the movies, anyway?
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