This winter and last winter have had some pretty serious snowfall here. My Alaskan and Canadian readers may not be much impressed, but for us it set records, for the winter in 2007-2008 and for the month of December in 2008.
Getting Rose to and from school was a particular challenge last winter. Not that Rose doesn't cope with snow fairly well, but we always had Joy along too. Too big to carry, strollers are useless in the snow, had behavioral issues in early 2008 and didn't always care to slog along snowy sidewalks.
Other families were using sleds, especially for younger sibs. But that didn't work for us either, and I was envious. Joy wouldn't stay on a sled. Even on a downhill run, she'd ditch halfway through the ride. Trying to pull along a snowy road? Forget about it.
But this winter, I posted in December about our amazing family sledding outing. "Joy sticks to the sled like a little burr!" I wrote. So I decided to try the sled as a transportation device to get rose to school yesterday morning.
It worked like a charm. I was able to tow both girls on the sled about 2/3 of the way before we hit street & sidewalk that was too dry for sled (about a 10 minute endeavor). Joy kept on the sled, and kept on her mittens and boots no problem. Then I held her hand and we all walked the last third together. The way back was similar. Walked well, Joy alone on the sled this time, stayed on the sled and never lost so much as a mitten. She did great. Rose, on the other hand, complained bitterly about the cold once she had to get out of the sled and start walking, and told me she was so cold, she was gonna die. And it was all my fault because I didn't lay out her scarf for her (as if she had asked? and anyway, she had a hat and a hood). Can you say, "pre-teen"? At the age of almost seven, yikes!!
Guess I can say goodbye to the sled envy, at least unless/until we have any major switch-flipping in that area!
Speaking of switch-flipping, I'm now ready to declare that Joy did not have a Christmas regression this year, unlike the past two holiday seasons. If the switches go haywire tomorrow, we'd call it a New Year regression. But we made it through the holidays. Woohoo!
Showing posts with label regression. Show all posts
Showing posts with label regression. Show all posts
Friday, January 9, 2009
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:
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.
I 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:
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?
Well, here it is. Behold, the extended metaphor:
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.
I 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?
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!)
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...
ZERO.
Looking forward to sharing more!
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...
ZERO.
Looking forward to sharing more!
Sunday, September 14, 2008
In the Moment
Well, that was quite a swing between my All Lit Up post and my Regression Analysis post. I'd say sorry for being such a downer in the latter, but... it is what it is. Talking about Joy's regressions takes me to dark places, and that's part of the way things go sometimes around here.
On the other hand, the regression part of Joy's journey also has something to teach me about living in the moment, if I let the lesson sink in. If I worry too much about the future and the next regression that might (or might not) be around the corner, there are many glorious Joy-moments that might not get the appreciation they deserve.
Like all the peek-a-boo games yesterday!
One of Joy's intensive autism therapists was the first to elicit it, a week ago. Joy has always loved peek-a-boo games, and has been pulling the blanket away from our faces to peek for a long time now. Last week, though, the therapist reported that Joy held up the blanket TO HER OWN FACE and did a peek! Turn-taking, imitation, initiation, social awareness, all in one tasty package!
Joy showed off her new skill a couple of times during the past week, with great big grins and giggles. Then yesterday, she decided it was her favorite new thing to do. We spent long spells peek-ing, sometimes at my initiation, sometimes at hers, sometimes between Joy and JoyDad. She was enjoying holding up that blanket so much, I sometimes had to playfully grab it away to get a turn in edgewise!
My favorite interaction, though, was at one point when I came upstairs and she initiated the game, holding up the blanket to peek. Then she came over, took my hand and put it into the blanket, thereby asking me to take my turn...
Oh yes, there are some glorious moments here, when we're willing to live in them.
On the other hand, the regression part of Joy's journey also has something to teach me about living in the moment, if I let the lesson sink in. If I worry too much about the future and the next regression that might (or might not) be around the corner, there are many glorious Joy-moments that might not get the appreciation they deserve.
Like all the peek-a-boo games yesterday!
One of Joy's intensive autism therapists was the first to elicit it, a week ago. Joy has always loved peek-a-boo games, and has been pulling the blanket away from our faces to peek for a long time now. Last week, though, the therapist reported that Joy held up the blanket TO HER OWN FACE and did a peek! Turn-taking, imitation, initiation, social awareness, all in one tasty package!
Joy showed off her new skill a couple of times during the past week, with great big grins and giggles. Then yesterday, she decided it was her favorite new thing to do. We spent long spells peek-ing, sometimes at my initiation, sometimes at hers, sometimes between Joy and JoyDad. She was enjoying holding up that blanket so much, I sometimes had to playfully grab it away to get a turn in edgewise!
My favorite interaction, though, was at one point when I came upstairs and she initiated the game, holding up the blanket to peek. Then she came over, took my hand and put it into the blanket, thereby asking me to take my turn...
Oh yes, there are some glorious moments here, when we're willing to live in them.
Saturday, September 13, 2008
Regression Analysis
Regression. Possibly THE most frustrating aspect of Joy's development, for me anyway.
For those not living in autism-land themselves, it might surprise you to learn that big regressions are not necessarily a part of the autism trajectory. The most highly-publicized autism stories (especially in the "what causes autism" controversy accounts) often involve a great big regression at some point in the first two years of life. The child retreats into him- or herself, becomes withdrawn, loses language, almost seems like a different person -- and when the stunned parents go looking for a diagnosis, autism is what they discover.
While this is definitely one piece of the autism story, it is by no means what everyone experiences. Some kids with autism don't regress at all, others plateau, others show symptoms from the beginning and then regress, others have multiple regressions over time. There's a nice round-up of several studies on autism-related regression in a June 2008 IAN Research Report (the Interactive Autism Network, sponsored by Autism Speaks). One of the studies they cite found 46% of their sample of kids on the autism spectrum had experienced regression, but only 30% of those reported normal development up to that point. Another study with a stricter definition of regression found regression in their sample in only 11.8% of children with autism and 5.5% of children elsewhere on the autism spectrum.
Joy's in the "early symptoms" and "multiple regressions over time" categories.
I blogged in July about the "early symptoms" (When Did You First Notice...?) We definitely had a whole cascade of symptoms before we hit a regression, from language problems to interaction deficits to sensory issues, with whipped cream and seizures on top.
The first regression was subtle enough that we didn't catch it in progress. Sometime in late fall of 2006, at the age of 2 1/2, Joy started losing words and started ramping up with behavior issues. The timing was probably pretty good, if you can say such a thing, because we'd been waiting for an appointment with a prominent developmentalist who specialized in autism, and the appointment was Dec. 21. That's when we got the autism diagnosis, and the doctor pointed out autism issues left and right. She chastised me for having filled out forms describing Joy in far too glowing terms, and told me that I'd better mend my ways when applying for intensive autism therapy, because you have to paint the bleakest version of truth to have the best chance of getting the therapies you need.
And let me digress here to say what a soul-killing reality this is, on an annual basis or more, for parents of kids with special needs. At least every year for the school district, and sometimes more often than that, we have to focus on what our children can't do, in order to advocate for them and get them the best services we can. How screwed up is that?!
Anyway. The doctor also chastized our Birth-to-Three representative, who was so kind as to accompany us to the appointment, for not recognizing the autism. We all felt rather wrung-out by the end of the appointment. Merry Christmas 2006 to all!
What we hadn't yet put together was that Joy's first big regression had been happening between the time I filled out those forms and the time she got the diagnosis. The most obvious piece of the regression was that she went from about 80 words to about 20. Even that, though, can be hard to track. Think about it -- if you're even keeping track of your kiddo's words for the baby book, you write them down when you start hearing them, and then you consider them mastered. What you don't anticipate is that any utterance of that word might be the last time you hear it for goodness-knows-how-long. When do you realize that you haven't heard that word for a while? In a week? In a month?
Our tracking system got much better when we started a private Yahoo! group for Joy and started trading daily updates with Lynda the daycare lady, wherein I also began describing the Birth-to-Three therapy sessions. In this way we were able to track how Joy came out of the regression over the course of the summer. Then in the fall she started with the school district and those therapists started contributing reports of every session to our lovely online archive, documenting some very nice progress. We were back up over 80 words, starting to do some color matching, stringing chunky beads, beginning to stack Legos....
And then came Christmas 2007. This time we saw it right away, though it probably was only a little more extreme than the first time. It happened over Christmas break. Joy started losing words again, wouldn't tolerate being in the Sunday school classroom, had a behavioral down-spiral. In February 2008 we think she had a virus that made things even worse.
Good things have happened since then, for sure. Joy has begun to lead people by the hand to what she wants. We've established some nice new helper routines. Some words have come back (like ma-ma-ma-ma-ma!) She re-entered the Sunday school classroom in June. She has begun to initiate peek-a-boo games. Much to be happy about!
On the other hand, we haven't seen the level of language recovery that we did the prior summer. And Christmas is coming again in three months...
That's the worst of it, I think. Christmas is coming again, or we may see a regression sooner, or maybe later, or maybe never again. And we never know, from day to day, whether this day will be the last day that she says ma-ma-ma for the next year. We can't take any gain for granted. And that's very, very hard.
The IAN report I linked to earlier was also reporting on its own data collection about regression. Very unscientific, not peer-reviewed, self-selected respondents, self-reported information. However, despite all those caveats, there was this fascinating chart, with the big question on the chart in red:
In other words, maybe someone will start taking notice of late regressions, or multiple regressions? Maybe there's some fodder here for future research, instead of focusing autistic-regression research solely on those big initial regressions, which, devastating as they are, by no means tell the whole regression story.
For those not living in autism-land themselves, it might surprise you to learn that big regressions are not necessarily a part of the autism trajectory. The most highly-publicized autism stories (especially in the "what causes autism" controversy accounts) often involve a great big regression at some point in the first two years of life. The child retreats into him- or herself, becomes withdrawn, loses language, almost seems like a different person -- and when the stunned parents go looking for a diagnosis, autism is what they discover.
While this is definitely one piece of the autism story, it is by no means what everyone experiences. Some kids with autism don't regress at all, others plateau, others show symptoms from the beginning and then regress, others have multiple regressions over time. There's a nice round-up of several studies on autism-related regression in a June 2008 IAN Research Report (the Interactive Autism Network, sponsored by Autism Speaks). One of the studies they cite found 46% of their sample of kids on the autism spectrum had experienced regression, but only 30% of those reported normal development up to that point. Another study with a stricter definition of regression found regression in their sample in only 11.8% of children with autism and 5.5% of children elsewhere on the autism spectrum.
Joy's in the "early symptoms" and "multiple regressions over time" categories.
I blogged in July about the "early symptoms" (When Did You First Notice...?) We definitely had a whole cascade of symptoms before we hit a regression, from language problems to interaction deficits to sensory issues, with whipped cream and seizures on top.
The first regression was subtle enough that we didn't catch it in progress. Sometime in late fall of 2006, at the age of 2 1/2, Joy started losing words and started ramping up with behavior issues. The timing was probably pretty good, if you can say such a thing, because we'd been waiting for an appointment with a prominent developmentalist who specialized in autism, and the appointment was Dec. 21. That's when we got the autism diagnosis, and the doctor pointed out autism issues left and right. She chastised me for having filled out forms describing Joy in far too glowing terms, and told me that I'd better mend my ways when applying for intensive autism therapy, because you have to paint the bleakest version of truth to have the best chance of getting the therapies you need.
And let me digress here to say what a soul-killing reality this is, on an annual basis or more, for parents of kids with special needs. At least every year for the school district, and sometimes more often than that, we have to focus on what our children can't do, in order to advocate for them and get them the best services we can. How screwed up is that?!
Anyway. The doctor also chastized our Birth-to-Three representative, who was so kind as to accompany us to the appointment, for not recognizing the autism. We all felt rather wrung-out by the end of the appointment. Merry Christmas 2006 to all!
What we hadn't yet put together was that Joy's first big regression had been happening between the time I filled out those forms and the time she got the diagnosis. The most obvious piece of the regression was that she went from about 80 words to about 20. Even that, though, can be hard to track. Think about it -- if you're even keeping track of your kiddo's words for the baby book, you write them down when you start hearing them, and then you consider them mastered. What you don't anticipate is that any utterance of that word might be the last time you hear it for goodness-knows-how-long. When do you realize that you haven't heard that word for a while? In a week? In a month?
Our tracking system got much better when we started a private Yahoo! group for Joy and started trading daily updates with Lynda the daycare lady, wherein I also began describing the Birth-to-Three therapy sessions. In this way we were able to track how Joy came out of the regression over the course of the summer. Then in the fall she started with the school district and those therapists started contributing reports of every session to our lovely online archive, documenting some very nice progress. We were back up over 80 words, starting to do some color matching, stringing chunky beads, beginning to stack Legos....
And then came Christmas 2007. This time we saw it right away, though it probably was only a little more extreme than the first time. It happened over Christmas break. Joy started losing words again, wouldn't tolerate being in the Sunday school classroom, had a behavioral down-spiral. In February 2008 we think she had a virus that made things even worse.
Good things have happened since then, for sure. Joy has begun to lead people by the hand to what she wants. We've established some nice new helper routines. Some words have come back (like ma-ma-ma-ma-ma!) She re-entered the Sunday school classroom in June. She has begun to initiate peek-a-boo games. Much to be happy about!
On the other hand, we haven't seen the level of language recovery that we did the prior summer. And Christmas is coming again in three months...
That's the worst of it, I think. Christmas is coming again, or we may see a regression sooner, or maybe later, or maybe never again. And we never know, from day to day, whether this day will be the last day that she says ma-ma-ma for the next year. We can't take any gain for granted. And that's very, very hard.
The IAN report I linked to earlier was also reporting on its own data collection about regression. Very unscientific, not peer-reviewed, self-selected respondents, self-reported information. However, despite all those caveats, there was this fascinating chart, with the big question on the chart in red:
In other words, maybe someone will start taking notice of late regressions, or multiple regressions? Maybe there's some fodder here for future research, instead of focusing autistic-regression research solely on those big initial regressions, which, devastating as they are, by no means tell the whole regression story.
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