What does appendicitis feel like, anyway?
Yeah, this isn't how I wanted to start the day. Well, it also feels like gas, so we'll see. Perhaps I just need to, you know, play a little pants tuba.
I'll let you know. Without a lot of detail, because I love love love you all.
Ow.
July 20, 2006
July 18, 2006
My new favorite writer
I just received an email from the regional consultant for the Prentke Romich Company, makers of the Big Box of Words. Schuyler is now featured on part of their website, the section concerning Language. It's actually a really good primer for learning about the BBoW, if you're interested. Also, a couple of her friends from the Box Class are there, including her girl crush, Sara.
If you want to skip straight to Schuyler, her moment in the spotlight (including a fairly relaxed attitude towards the spelling of her name, but they got closer than most people do) is under Putting Symbols Together. Even better, some of her writing samples are featured. She reflects on the transient nature of childhood experience, and she lays out a little earth science as well.
If you want to skip straight to Schuyler, her moment in the spotlight (including a fairly relaxed attitude towards the spelling of her name, but they got closer than most people do) is under Putting Symbols Together. Even better, some of her writing samples are featured. She reflects on the transient nature of childhood experience, and she lays out a little earth science as well.
Email of the Week
From: cool Dutch name deleted
Date: July 18, 2006
To: rhudson@digitalism.com
Subject: Hello from The Netherlands
Hello Rob,
On your website about your pragnent wife Julie, I saw that she had put a headphone on her belly. Is that relaxing for the baby, when you put on soft music? Because a week ago I saw on a website that another women had a headphone on her pregnant belly, and that gave me an idea to innovate this. By making a belt with earplugs on it with a standard jack, so you can put it in your mp3/stereo.
Kind Regards,
cool Dutch name deleted
My favorite part is where he asks me if it's relaxing for the baby. I'm so stupid, I totally forgot to ask Schuyler when she was born...
Date: July 18, 2006
To: rhudson@digitalism.com
Subject: Hello from The Netherlands
Hello Rob,
On your website about your pragnent wife Julie, I saw that she had put a headphone on her belly. Is that relaxing for the baby, when you put on soft music? Because a week ago I saw on a website that another women had a headphone on her pregnant belly, and that gave me an idea to innovate this. By making a belt with earplugs on it with a standard jack, so you can put it in your mp3/stereo.
Kind Regards,
cool Dutch name deleted
My favorite part is where he asks me if it's relaxing for the baby. I'm so stupid, I totally forgot to ask Schuyler when she was born...
July 16, 2006
Knowing Schuyler
It is obviously an understatement to say that I frequently write about Schuyler.
Before she was born, I was a pretty selfish person. It made my writing fun, I suppose, but not in a way that was going to enrich anyone's life. I wrote about me, and how the world affected me, and what the world owed me, and occasionally I might wander off topic briefly, only to suddenly realize that we weren't talking about me anymore.
After we found out that Schuyler was coming, I was still writing about me, but suddenly it was about this baby and how she was growing and how scared I was and how I didn't have a clue what to do and how, yes, I was afraid of all the things that could go wrong with her, never guessing that the thing that would become her bane had already formed and was simply going to sit there for almost four years waiting to be noticed.
After she was born, I wrote about her a lot, in the way you write about babies. They don't do much worth writing about. They shit and cry and scare you and occasionally do something vaguely human-like. So in writing about her, I was still writing about me.
And then she turned into a little girl, and then a little girl who didn't talk, and then a little girl being tested by big Yale medical brains, and finally she was a little girl with a monster living in her head, its invisible hand clapped firmly and immovably over her mouth.
And at some point, she became the thing I wrote about most of all. In February, realizing this and wanting to say more in less time, I gave up all pretenses of being independently interesting myself, and I moved my writing to a blog, and named it after Schuyler and me. And here we are.
So yes. I write about Schuyler. And yet, I'm not sure how well I do, because different people have different ideas of who she is, based on my words. Some people get it right, and some people get it wildly wrong. Schuyler's hard to describe. I'll spend the rest of my life trying.
We watched her at play in one of those big indoor playgrounds today. One reason, as I wrote last time, that I will never hit her (as if I need a list) is that Schuyler is a courageous girl, and I don't want the first thing she learns to fear to be me. Her fearlessness is astounding, and one of the things of which I am the most proud of. We went to see a movie today, and we had our misgivings about how scary it might be for her. Once again, she loved the movie and embraced its monsters as her own.
(I'm not in love with hearing everyone's criticism of the movies we take her to, but I'll simply say that in her usual "everyone gets a role in the movie" way, she has now determined that she is the Captain, complete with bold swagger and a hearty "Arrr!", I am Davy Jones (with little fingers miming the tentacles on my face), and poor Julie is none other than the Kraken. She's less than thrilled by that, but honestly, I'm jealous. Who wouldn't want to be the Kraken?)
It's hard to describe Schuyler's fearlessness, or her bursting optimism, her almost constant good mood and her complete and total lack of shyness. I can't think of a person I know with more cause to wake up in a shitty mood than Schuyler, no one who has a better reason to go outside and shake her angry fists at the sky, cursing God unintelligibly. And yet, she never does. She gets frustrated, she occasionally throws up her hands in exasperation, but she moves on. And I wish you could know her, every one of you, even those of you who say unkind things about her and about me, because I can't win you over (and I don't always want to), but she could. She would.
I was thinking about this earlier, and I decided to add a few links to the sidebar, links to things that other people who know Schuyler have written about her. They were written by our friends, and hers. I don't tell them often enough how much I love them, but I do. These entries mostly revolve around the time when Schuyler was diagnosed, or after we went to Chicago to meet with Dr. Dobyns and instead of hope, we got handed the full measure of her monster.
I hope you'll go read them.
Schuyler's hair has almost faded back to its original color, and since she's swimming in a chlorinated pool every day at camp, we've held off on coloring it again. But she's asking. She watches her favorite characters on kid shows like The Doodlebops and the ever-weird LazyTown, and if you're bold enough to follow those links, you'll see what those characters have in common. And you'll probably be able to figure out what Schuyler's been asking for.
You should know by now that our answer is probably going to be yes.
Before she was born, I was a pretty selfish person. It made my writing fun, I suppose, but not in a way that was going to enrich anyone's life. I wrote about me, and how the world affected me, and what the world owed me, and occasionally I might wander off topic briefly, only to suddenly realize that we weren't talking about me anymore.
After we found out that Schuyler was coming, I was still writing about me, but suddenly it was about this baby and how she was growing and how scared I was and how I didn't have a clue what to do and how, yes, I was afraid of all the things that could go wrong with her, never guessing that the thing that would become her bane had already formed and was simply going to sit there for almost four years waiting to be noticed.
After she was born, I wrote about her a lot, in the way you write about babies. They don't do much worth writing about. They shit and cry and scare you and occasionally do something vaguely human-like. So in writing about her, I was still writing about me.
And then she turned into a little girl, and then a little girl who didn't talk, and then a little girl being tested by big Yale medical brains, and finally she was a little girl with a monster living in her head, its invisible hand clapped firmly and immovably over her mouth.
And at some point, she became the thing I wrote about most of all. In February, realizing this and wanting to say more in less time, I gave up all pretenses of being independently interesting myself, and I moved my writing to a blog, and named it after Schuyler and me. And here we are.
So yes. I write about Schuyler. And yet, I'm not sure how well I do, because different people have different ideas of who she is, based on my words. Some people get it right, and some people get it wildly wrong. Schuyler's hard to describe. I'll spend the rest of my life trying.
We watched her at play in one of those big indoor playgrounds today. One reason, as I wrote last time, that I will never hit her (as if I need a list) is that Schuyler is a courageous girl, and I don't want the first thing she learns to fear to be me. Her fearlessness is astounding, and one of the things of which I am the most proud of. We went to see a movie today, and we had our misgivings about how scary it might be for her. Once again, she loved the movie and embraced its monsters as her own.
(I'm not in love with hearing everyone's criticism of the movies we take her to, but I'll simply say that in her usual "everyone gets a role in the movie" way, she has now determined that she is the Captain, complete with bold swagger and a hearty "Arrr!", I am Davy Jones (with little fingers miming the tentacles on my face), and poor Julie is none other than the Kraken. She's less than thrilled by that, but honestly, I'm jealous. Who wouldn't want to be the Kraken?)
It's hard to describe Schuyler's fearlessness, or her bursting optimism, her almost constant good mood and her complete and total lack of shyness. I can't think of a person I know with more cause to wake up in a shitty mood than Schuyler, no one who has a better reason to go outside and shake her angry fists at the sky, cursing God unintelligibly. And yet, she never does. She gets frustrated, she occasionally throws up her hands in exasperation, but she moves on. And I wish you could know her, every one of you, even those of you who say unkind things about her and about me, because I can't win you over (and I don't always want to), but she could. She would.
I was thinking about this earlier, and I decided to add a few links to the sidebar, links to things that other people who know Schuyler have written about her. They were written by our friends, and hers. I don't tell them often enough how much I love them, but I do. These entries mostly revolve around the time when Schuyler was diagnosed, or after we went to Chicago to meet with Dr. Dobyns and instead of hope, we got handed the full measure of her monster.
I hope you'll go read them.
Schuyler's hair has almost faded back to its original color, and since she's swimming in a chlorinated pool every day at camp, we've held off on coloring it again. But she's asking. She watches her favorite characters on kid shows like The Doodlebops and the ever-weird LazyTown, and if you're bold enough to follow those links, you'll see what those characters have in common. And you'll probably be able to figure out what Schuyler's been asking for.
You should know by now that our answer is probably going to be yes.
July 13, 2006
Spare the child.
(I can't remember the last time I felt like I needed to open an entry with a disclaimer, unless it was when I was going to show a photo of a goopy toe. But this entry is probably going to anger some good people, and for that, I am legitimately sorry. Sometimes, though, you really do just have to spill what's in your head.)
Well, someone finally said it. I've been waiting for a month for someone to come right out and say it, and with yesterday's email, I finally got an honest soul who wasn't afraid to use the words.
After all the thinly veiled remarks I have gotten from a particular group of people about how Schuyler is a horrible little brat and it's my fault for not disciplining her properly, someone finally figured out what's wrong with her.
I don't hit her. I don't beat Schuyler.
(I can only assume that by "what's wrong with her", they mean the fact that she is apparently an out-of-control barbarian and not her mutism. No one has suggested that she simply needs to have the words beaten out of her. Not yet, anyway.)
No one ever puts it in those terms, of course. People hide behind words like "spank" and "swat" and "discipline" and "corporal punishment" and, as my Agnostic Maybe-God is my witness, "Spanking With Love". (URL updated; the old one is now a porn site, chicka-pow-pow!) That site uses as its logo a heart formed by a pair of upturned buttocks. I kid you not.
(The "Spanking With Love" site is a real peach, by the way. In addition to some fun "how to" sections, there is also a page for kids who WANT to be spanked and how to get their parents to do so. I wonder how many spanking parents really want to think that their kids might be getting aroused by it? Believe me when I say that I'm all for spanking your girlfriend, that dirty little whore/French maid/Catholic schoolgirl/sexy veterinarian/whatever. Your own kids? Not so much.)
There are, in fact, a lot of ways to describe the act of physically striking a small child in order to cause pain with the intent of imposing your will on them. You can use any number of words and never even get around to "beat", "bully", "violence" or "abuse". It is one of the many attributes that make the English language so powerful, its ability to elegantly mask the true meaning behind concepts and behaviors.
So there it is. I threw some words out there, and it is from those words that you can, if you haven't figured it out already, discern my feelings towards physically punishing my child. That's my kid. You are free to beat your own kid. You are free to use violence against your own son or daughter. You are free, inasmuch as the law will allow, to ABUSE your own child.
Just don't expect me to use your terminology.
I've heard the arguments, and I'm sure I'm about to hear them again. And because I have written on occasion about isolated incidents where Schuyler felt compelled to act out aggressively, the Loving Spankers will no doubt say that I have raised an unruly child.
That's fine. Her school doesn't agree, and neither do any of her other caregivers. She has never been cited as unusually aggressive, either as a non-verbal child or otherwise, and her behavior, while troubling to me on those occasions when I have written about it, has always been described by her teachers as normal for a child her age. (Although I must say that if she had been cited, I would be even less likely to hurt her.)
But what do that bunch of liberal, permissive, crunchy granola educator hippies know about raising a child? Do they have children? And this brings us to another argument. "People who oppose spanking children simply do not understand the what it is like trying to raise a child." Okay, fair enough. So why do you spank? To teach your child a constructive lesson or to relieve your own anger?
The American Academy of Pediatrics thinks it knows the answer.
It thinks it knows the result of beating your kids, too.
And in a 2002 study looking back at sixty years of research on corporal punishment, Elizabeth Gershoff, Ph. D., found that the only positive result of spanking was immediate compliance; long-term compliance was actually diminished as a result of corporal punishment. Spanking was also directly linked to increased rates of aggression, delinquency, mental health disorders, problems in relationships with parents, and the likelihood of those children being physically abused and, eventually, abusing their own children.
So. It doesn't work, and it fucks up your kids. Seems pretty straightforward to me. But you, in the back? You had something to say?
"You know, I was spanked as a child, and I grew up to be perfectly healthy and have raised my kids just fine."
Did you? You think? You were, as a small child, routinely subjected to violence by someone probably five times your size so that you would be subject to their demands? As a result, you grew up, had some small children of your own, and then proceeded to beat them into submission as well?
We have a different definition of "perfectly healthy", you and I. We have a wildly different idea of what it means for an innocent child to be "just fine".
You may think that I believe that if you as a parent spank your children, I automatically believe that you are a bad parent. I don't, not necessarily and not without knowing what kind of parent you are as a whole. Nor do I think your children are necessarily going to grow up to be damaged.
But I do think you are wrong. And as much as you might feel sorry for my kid for having me as a father, I guarantee I feel more sorry for yours.
Well, someone finally said it. I've been waiting for a month for someone to come right out and say it, and with yesterday's email, I finally got an honest soul who wasn't afraid to use the words.
After all the thinly veiled remarks I have gotten from a particular group of people about how Schuyler is a horrible little brat and it's my fault for not disciplining her properly, someone finally figured out what's wrong with her.
I don't hit her. I don't beat Schuyler.
(I can only assume that by "what's wrong with her", they mean the fact that she is apparently an out-of-control barbarian and not her mutism. No one has suggested that she simply needs to have the words beaten out of her. Not yet, anyway.)
No one ever puts it in those terms, of course. People hide behind words like "spank" and "swat" and "discipline" and "corporal punishment" and, as my Agnostic Maybe-God is my witness, "Spanking With Love". (URL updated; the old one is now a porn site, chicka-pow-pow!) That site uses as its logo a heart formed by a pair of upturned buttocks. I kid you not.
(The "Spanking With Love" site is a real peach, by the way. In addition to some fun "how to" sections, there is also a page for kids who WANT to be spanked and how to get their parents to do so. I wonder how many spanking parents really want to think that their kids might be getting aroused by it? Believe me when I say that I'm all for spanking your girlfriend, that dirty little whore/French maid/Catholic schoolgirl/sexy veterinarian/whatever. Your own kids? Not so much.)
There are, in fact, a lot of ways to describe the act of physically striking a small child in order to cause pain with the intent of imposing your will on them. You can use any number of words and never even get around to "beat", "bully", "violence" or "abuse". It is one of the many attributes that make the English language so powerful, its ability to elegantly mask the true meaning behind concepts and behaviors.
So there it is. I threw some words out there, and it is from those words that you can, if you haven't figured it out already, discern my feelings towards physically punishing my child. That's my kid. You are free to beat your own kid. You are free to use violence against your own son or daughter. You are free, inasmuch as the law will allow, to ABUSE your own child.
Just don't expect me to use your terminology.
I've heard the arguments, and I'm sure I'm about to hear them again. And because I have written on occasion about isolated incidents where Schuyler felt compelled to act out aggressively, the Loving Spankers will no doubt say that I have raised an unruly child.
That's fine. Her school doesn't agree, and neither do any of her other caregivers. She has never been cited as unusually aggressive, either as a non-verbal child or otherwise, and her behavior, while troubling to me on those occasions when I have written about it, has always been described by her teachers as normal for a child her age. (Although I must say that if she had been cited, I would be even less likely to hurt her.)
But what do that bunch of liberal, permissive, crunchy granola educator hippies know about raising a child? Do they have children? And this brings us to another argument. "People who oppose spanking children simply do not understand the what it is like trying to raise a child." Okay, fair enough. So why do you spank? To teach your child a constructive lesson or to relieve your own anger?
The American Academy of Pediatrics thinks it knows the answer.
Corporal punishment is of limited effectiveness and has potentially deleterious side effects. The American Academy of Pediatrics recommends that parents be encouraged and assisted in the development of methods other than spanking for managing undesired behavior.
It thinks it knows the result of beating your kids, too.
The more children are spanked, the more anger they report as adults, the more likely they are to spank their own children, the more likely they are to approve of hitting a spouse, and the more marital conflict they experience as adults. Spanking has been associated with higher rates of physical aggression, more substance abuse, and increased risk of crime and violence when used with older children and adolescents.
And in a 2002 study looking back at sixty years of research on corporal punishment, Elizabeth Gershoff, Ph. D., found that the only positive result of spanking was immediate compliance; long-term compliance was actually diminished as a result of corporal punishment. Spanking was also directly linked to increased rates of aggression, delinquency, mental health disorders, problems in relationships with parents, and the likelihood of those children being physically abused and, eventually, abusing their own children.
So. It doesn't work, and it fucks up your kids. Seems pretty straightforward to me. But you, in the back? You had something to say?
"You know, I was spanked as a child, and I grew up to be perfectly healthy and have raised my kids just fine."
Did you? You think? You were, as a small child, routinely subjected to violence by someone probably five times your size so that you would be subject to their demands? As a result, you grew up, had some small children of your own, and then proceeded to beat them into submission as well?
We have a different definition of "perfectly healthy", you and I. We have a wildly different idea of what it means for an innocent child to be "just fine".
You may think that I believe that if you as a parent spank your children, I automatically believe that you are a bad parent. I don't, not necessarily and not without knowing what kind of parent you are as a whole. Nor do I think your children are necessarily going to grow up to be damaged.
But I do think you are wrong. And as much as you might feel sorry for my kid for having me as a father, I guarantee I feel more sorry for yours.
July 10, 2006
Why I was late for work.
I'm not a morning person. (And if you are, it doesn't mean I won't be your friend. I'm just unlikely to be your friend before 10am.) But some mornings are tolerable. More than tolerable, actually.
Take today, for example. We started off the day getting ready for summer camp the same way we always do, singing the Village People. Don't start with me. I don't put on assless chaps when we sing it, freaks. It's topical. Don't look at me like I'm a monster.
Anyway, our version just has the refrain over and over, with appropriate variations on her day camp theme. Today went like this:
Me: "We're gonna' play at the..."
Schuyler: "Eye-eh-ee-ay!" (YMCA, with the moves. Well, of course.)
Me: "We're gonna swim at the..."
Schuyler: "Eye-eh-ee-ay!"
Me: "And have some fun at the..."
Schuyler: "Eye-eh-ee-ay!"
Me: "And eat a bug at the..."
Schuyler: "Eye... Nooooooo!"
And then she laughed and signed Mommy, because as she makes clear to anyone who asks, Julie is the bug eater in our home.
When we were leaving, Schuyler opened the front door and stepped out first. I heard her gasp in amazement and say "Ah-ee!" (Daddy) When I looked out the door, I saw her standing in the grass as a flock of baby ducks mobbed her. They ran up to her, peeping excitedly and then lining up in front of her as if for inspection. They settled in for a while and relaxed with her. They weren't even a tiny bit afraid of her. She talked to them in her strange moonman language, and they peeped back at her as if she was making all the sense in the world.
That's how it is with Schuyler. She talks and you don't get it, but you want to. As we drove to camp, she was so happy about the ducklings that she sang the whole way. Unless I am horribly out of the loop regarding songs known by six year-olds, she wasn't singing anything she'd been taught in school. She makes up songs and lyrics, and I could listen to her sing them all day. Her songs make up the best part of any day, and also the saddest. They are songs that will be forever lost to the world, with meanings known only to her.
Anyway, that's why I was late to work. You can't blow off baby ducks.
Take today, for example. We started off the day getting ready for summer camp the same way we always do, singing the Village People. Don't start with me. I don't put on assless chaps when we sing it, freaks. It's topical. Don't look at me like I'm a monster.
Anyway, our version just has the refrain over and over, with appropriate variations on her day camp theme. Today went like this:
Me: "We're gonna' play at the..."
Schuyler: "Eye-eh-ee-ay!" (YMCA, with the moves. Well, of course.)
Me: "We're gonna swim at the..."
Schuyler: "Eye-eh-ee-ay!"
Me: "And have some fun at the..."
Schuyler: "Eye-eh-ee-ay!"
Me: "And eat a bug at the..."
Schuyler: "Eye... Nooooooo!"
And then she laughed and signed Mommy, because as she makes clear to anyone who asks, Julie is the bug eater in our home.
When we were leaving, Schuyler opened the front door and stepped out first. I heard her gasp in amazement and say "Ah-ee!" (Daddy) When I looked out the door, I saw her standing in the grass as a flock of baby ducks mobbed her. They ran up to her, peeping excitedly and then lining up in front of her as if for inspection. They settled in for a while and relaxed with her. They weren't even a tiny bit afraid of her. She talked to them in her strange moonman language, and they peeped back at her as if she was making all the sense in the world.
That's how it is with Schuyler. She talks and you don't get it, but you want to. As we drove to camp, she was so happy about the ducklings that she sang the whole way. Unless I am horribly out of the loop regarding songs known by six year-olds, she wasn't singing anything she'd been taught in school. She makes up songs and lyrics, and I could listen to her sing them all day. Her songs make up the best part of any day, and also the saddest. They are songs that will be forever lost to the world, with meanings known only to her.
Anyway, that's why I was late to work. You can't blow off baby ducks.
July 6, 2006
Well, yeah
(Cross posted from Diabetes Notes becaause it's more amusing than anything I am likely to write here today).
In a development sure to be covered in more detail in the next issue of The Journal of Duh, a study of overweight type 2 diabetics has found that increasing the amount of walking they do every day will result in significant improvements in heart and respiratory fitness. The study examined the exercise routine of eight subjects who were already walking more than the recommended 10,000 steps a day.
“The program used simple tools (pedometer and stopwatch) and a simple message to pick up the pace,” said Steven T. Johnson of the University of Alberta in Edmonton, Alberta, Canada, along with colleagues in the journal Diabetes Care.
The “Pick Up the Pace” program measured the number of steps that test subjects were typically taking and increased them by ten percent. This increase led to improvements in heart rate response to exercise, as well as a decrease in blood sugar levels.
In an earlier study, Johnson and his colleagues found that type 2 diabetics typically walk at a speed that is slower than that necessary to derive health benefits, even when the number of steps taken daily were increased.
There’s no word on whether or not they uncovered any mysterious connection between slow walking and painful feet, but I can only hope that in the near future, these researchers can unlock the secrets of how not smoking or eating donuts can also increase the health of diabetics. Well played, Mister Science!
In a development sure to be covered in more detail in the next issue of The Journal of Duh, a study of overweight type 2 diabetics has found that increasing the amount of walking they do every day will result in significant improvements in heart and respiratory fitness. The study examined the exercise routine of eight subjects who were already walking more than the recommended 10,000 steps a day.
“The program used simple tools (pedometer and stopwatch) and a simple message to pick up the pace,” said Steven T. Johnson of the University of Alberta in Edmonton, Alberta, Canada, along with colleagues in the journal Diabetes Care.
The “Pick Up the Pace” program measured the number of steps that test subjects were typically taking and increased them by ten percent. This increase led to improvements in heart rate response to exercise, as well as a decrease in blood sugar levels.
In an earlier study, Johnson and his colleagues found that type 2 diabetics typically walk at a speed that is slower than that necessary to derive health benefits, even when the number of steps taken daily were increased.
There’s no word on whether or not they uncovered any mysterious connection between slow walking and painful feet, but I can only hope that in the near future, these researchers can unlock the secrets of how not smoking or eating donuts can also increase the health of diabetics. Well played, Mister Science!
July 2, 2006
Schuyler's New Monster
When I get paid every month, our usual practice involves taking Schuyler out and rewarding her generally swell behavior with a trip to the toy store. She's not a terribly materialistic person, so it's not like she acts better or worse depending on how much stuff she gets. It's mostly just an excuse to go hang out in a toy store with Schuyler. Toys stores and pet stores are irresistible place to visit with her.
Tonight, Schuyler's choice came down to one of two things. One was a blue-haired Barbie with fairy wings, and believe me when I say that I am about sick to death of Barbie in her countless permutations. I don't care if she's a princess or a mermaid or a business woman or a crackwhore, her dead eyes and weird zero-gravity boobs give me the creeps. But when little girls find Barbie, and they always do, you have to decide whether to fight that losing battle or just raise your kid right and love her and hope that her self-esteem is high enough that she doesn't think that she has to grow up to be seven feet tall with giant dirigible tits to be happy.
But I digress.
The other toy she fixated on tonight was a dinosaur, from the same Fisher Price line as her others, but much cooler. No longer content to have one moving part and a single recorded snarl, this guy had glowing red eyes, a whole vocabulary of nasty sounds and a body that twisted menacingly, throwing his head back to roar when you pushed one of his scales.
It might only be a small surprise to learn that she picked the dinosaur.
I've written at length about her affinity for King Kong and dinosaurs and big scary beasts that scare most kids. Schuyler faces her own monster without flinching, and I truly believe that in her imaginary world, she goes into battle against that monster with her sword drawn and pink hair flying out Valkyrie-like from under her viking helmet, and she does so with a small army of her own monsters at her back.
As we left Toys-R-Us, she played with her new monster, watching him writhe and roar with a look of phony fear and rapt amazement. She held him up so he could see the lightning flashing in the distance and threatened other drivers with his big teeth and nasty disposition. Then she hugged him and kissed him and put him on the seat beside her, insisting that we buckle him in. Nothing staves off extinction like good common safety sense.
Now, as I write this, he is laying on the couch, covered by the blanket that she brought for him and tucked him under. I swear, he looks almost happy.
Tonight, Schuyler's choice came down to one of two things. One was a blue-haired Barbie with fairy wings, and believe me when I say that I am about sick to death of Barbie in her countless permutations. I don't care if she's a princess or a mermaid or a business woman or a crackwhore, her dead eyes and weird zero-gravity boobs give me the creeps. But when little girls find Barbie, and they always do, you have to decide whether to fight that losing battle or just raise your kid right and love her and hope that her self-esteem is high enough that she doesn't think that she has to grow up to be seven feet tall with giant dirigible tits to be happy.
But I digress.
The other toy she fixated on tonight was a dinosaur, from the same Fisher Price line as her others, but much cooler. No longer content to have one moving part and a single recorded snarl, this guy had glowing red eyes, a whole vocabulary of nasty sounds and a body that twisted menacingly, throwing his head back to roar when you pushed one of his scales.
It might only be a small surprise to learn that she picked the dinosaur.
I've written at length about her affinity for King Kong and dinosaurs and big scary beasts that scare most kids. Schuyler faces her own monster without flinching, and I truly believe that in her imaginary world, she goes into battle against that monster with her sword drawn and pink hair flying out Valkyrie-like from under her viking helmet, and she does so with a small army of her own monsters at her back.
As we left Toys-R-Us, she played with her new monster, watching him writhe and roar with a look of phony fear and rapt amazement. She held him up so he could see the lightning flashing in the distance and threatened other drivers with his big teeth and nasty disposition. Then she hugged him and kissed him and put him on the seat beside her, insisting that we buckle him in. Nothing staves off extinction like good common safety sense.
Now, as I write this, he is laying on the couch, covered by the blanket that she brought for him and tucked him under. I swear, he looks almost happy.
June 30, 2006
Schuyler's Brain
I've been thinking about Schuyler's brain.
It's been three years since the Yale School of Medicine took the MRI photos that introduced us to Congenital Bilateral Perisylvian Syndrome. It's a clumsy mouthful of words that, for reasons I can't fully explain but is probably a tiny act penance for my genetic guilt, I never copy and paste. I always type the words out.
This is it, by the way, in all its mysterious glory. Schuyler's brain. This was taken three years ago, but I assume it looks about the same. It won't heal, after all, although it is also worth pointing out, in that swell, "welcome to Holland", glass-half-full sort of way that it's not going to deteriorate, either.
It's the place where her monster lives, the thing that drives her, albeit without a license and with no regard for the law.
It's the mass of electrified tissue that will likely, one day when we least expect it (and we always expect it), begin to misfire and send her into seizures.
It's the echo chamber where she hears all the words that she knows, the full sentences that she tries to speak. It is also the hall from which those words can never escape except as a mysterious almost-language of vowels and inflections and pitch, but no hard consonants.
And it's also the place where King Kong lives.
Schuyler's brain is the file cabinet where the theme songs to Catscratch and Spongebob are stored, and where the lyrics and tunes to Wheels on the Bus and Itsy Bitsy Spider sit alongside those to the Village People's YMCA and James Brown's Sex Machine.
It is the art gallery where her portraits of toads and her parents (always strangely similar in general appearance) are hung, ready to reproduce in cheap restaurant crayon at a moment's notice.
It is where the lists of things that she IS and is NOT are posted. Both lists are constantly under revision, but currently the list of things she is NOT includes monkey, chicken, dinosaur, boogereater, princess (a recent revision; apparently she has abdicated the throne), good girl and stinkbug The list of things she IS? Mermaid. That's it for now. She's a minimalist.
Schuyler's brain is the place where she remembers that while no, she does not eat bugs, her mother apparently does, because if I ask her if she eats bugs, she says "Noooooo" and then either points to Julie or signs "mother" and laughs like it's the funniest joke ever, which it sort of is.
It's the computer that forgets to go to the bathroom when she gets overly excited (with predictably disastrous results) but remembers every morning as she's running down the hill at summer camp to turn and blow me a kiss, an act that should help to untie the knot in my stomach that I get when I leave her with other people, but doesn't, at all.
Schuyler's brain is is the thing that amazes us all with what it can do and breaks our hearts with the few things that it stubbornly refuses to do. It is the place where she runs through life as a little girl like every other little girl in the world, and the cage where she exists as an entirely unique creature, never alone and always alone.
It's been three years since the Yale School of Medicine took the MRI photos that introduced us to Congenital Bilateral Perisylvian Syndrome. It's a clumsy mouthful of words that, for reasons I can't fully explain but is probably a tiny act penance for my genetic guilt, I never copy and paste. I always type the words out.
This is it, by the way, in all its mysterious glory. Schuyler's brain. This was taken three years ago, but I assume it looks about the same. It won't heal, after all, although it is also worth pointing out, in that swell, "welcome to Holland", glass-half-full sort of way that it's not going to deteriorate, either.
It's the place where her monster lives, the thing that drives her, albeit without a license and with no regard for the law.
It's the mass of electrified tissue that will likely, one day when we least expect it (and we always expect it), begin to misfire and send her into seizures.
It's the echo chamber where she hears all the words that she knows, the full sentences that she tries to speak. It is also the hall from which those words can never escape except as a mysterious almost-language of vowels and inflections and pitch, but no hard consonants.
And it's also the place where King Kong lives.
Schuyler's brain is the file cabinet where the theme songs to Catscratch and Spongebob are stored, and where the lyrics and tunes to Wheels on the Bus and Itsy Bitsy Spider sit alongside those to the Village People's YMCA and James Brown's Sex Machine.
It is the art gallery where her portraits of toads and her parents (always strangely similar in general appearance) are hung, ready to reproduce in cheap restaurant crayon at a moment's notice.
It is where the lists of things that she IS and is NOT are posted. Both lists are constantly under revision, but currently the list of things she is NOT includes monkey, chicken, dinosaur, boogereater, princess (a recent revision; apparently she has abdicated the throne), good girl and stinkbug The list of things she IS? Mermaid. That's it for now. She's a minimalist.
Schuyler's brain is the place where she remembers that while no, she does not eat bugs, her mother apparently does, because if I ask her if she eats bugs, she says "Noooooo" and then either points to Julie or signs "mother" and laughs like it's the funniest joke ever, which it sort of is.
It's the computer that forgets to go to the bathroom when she gets overly excited (with predictably disastrous results) but remembers every morning as she's running down the hill at summer camp to turn and blow me a kiss, an act that should help to untie the knot in my stomach that I get when I leave her with other people, but doesn't, at all.
Schuyler's brain is is the thing that amazes us all with what it can do and breaks our hearts with the few things that it stubbornly refuses to do. It is the place where she runs through life as a little girl like every other little girl in the world, and the cage where she exists as an entirely unique creature, never alone and always alone.
June 25, 2006
Ghostly Girl
"And you'll be at home in the sky..."
Originally uploaded by Citizen Rob.
Ghostly Girl
Ghostly girl
Too light to stand on the ground
Nothing you do is done
And I can tell
You are not real
Girl, what are you doing here?
I don't know why I am here myself
No one else seems to know
Nobody likes a spook
Or so I've deduced
But I have loved some ghosts in my time
But that doesn't mean I want them around
I'd rather be lost than found
I thought I would lose my mind
But through your eyes I see
Past the billboards to the trees
And the flowering weeds
Grow throught the cracks of the city
And all these things will go
And all these seeds will grow
And you'll be home in the sky
(Lyrics and music by Jolie Holland)
June 24, 2006
Right choice, I guess
Okay, so a brief update is probably in order. Let's see if the Wretched iBook of Despair will let me do this.
Schuyler had a great time at the amusement park, as everyone figured she would. When I dropped her off at summer camp yesterday morning, I talked to the impossibly young, impossibly pretty and impossibly perky counselor who has been my usual point of contact, and she said that the trip was a huge success and that Schuyler had no problems at all. Most of the staff are sort of gleefully clueless, but this one girl seems to know what's going on and is always polite to me, in a "I'm being nice to you, old man, but please stop looking at my tits" kind of way. I'm not sure why she still bothers after all these weeks, since it clearly isn't working.
That was a joke. Settle down.
When I got home from work and gave her the Big Box of Words back, Schuyler wasn't very communicative about her day. That wasn't a huge surprise. She's still at the stage where answering questions and making very direct statements are what she's most comfortable with. Observations and descriptions are still difficult for her, although every now and then she'll surprise us, like in a restaurant about a month ago when she heard an infant crying in the distance and, without any sort of prompt, used the BBoW to say "Baby sad."
So when I asked her what she did at the amusement park, she sort of struggled for words before finally raising her hand in the air and then swooping it down with a loud noise and a laugh in what was clearly a roller coaster descriptive motion.
Holy crap, is my baby girl riding roller coasters? I'm going to be killing boys and burying their bodies in the alley in no time at all.
Schuyler had a great time at the amusement park, as everyone figured she would. When I dropped her off at summer camp yesterday morning, I talked to the impossibly young, impossibly pretty and impossibly perky counselor who has been my usual point of contact, and she said that the trip was a huge success and that Schuyler had no problems at all. Most of the staff are sort of gleefully clueless, but this one girl seems to know what's going on and is always polite to me, in a "I'm being nice to you, old man, but please stop looking at my tits" kind of way. I'm not sure why she still bothers after all these weeks, since it clearly isn't working.
That was a joke. Settle down.
When I got home from work and gave her the Big Box of Words back, Schuyler wasn't very communicative about her day. That wasn't a huge surprise. She's still at the stage where answering questions and making very direct statements are what she's most comfortable with. Observations and descriptions are still difficult for her, although every now and then she'll surprise us, like in a restaurant about a month ago when she heard an infant crying in the distance and, without any sort of prompt, used the BBoW to say "Baby sad."
So when I asked her what she did at the amusement park, she sort of struggled for words before finally raising her hand in the air and then swooping it down with a loud noise and a laugh in what was clearly a roller coaster descriptive motion.
Holy crap, is my baby girl riding roller coasters? I'm going to be killing boys and burying their bodies in the alley in no time at all.
June 23, 2006
Dispatch from the Abyss
Okay, quickly, and I hope this posts, my laptop is dying again, despite heroic efforts to keep it alive. Unless someone wants to send me a giant box of money, I may be sporadic for a while.
Schuyler had a good time yesterday, like everyone knew she would. I'll write more when I can.
Schuyler had a good time yesterday, like everyone knew she would. I'll write more when I can.
June 22, 2006
Tough choice
I'm sitting here at my desk at work, and I have Schuyler's Big Box of Words with me. I do believe that aside from that horrible day or two back in Austin when her summer school teacher took it away from her, it's the first time she's been without it in over a year, since she first started using it. And it's making me a little crazy.
Her summer camp is going to an amusement park today, a big one, and none of the kids are bringing backpacks. We thought hard about what to do. We could have insisted that she be allowed to take it anyway, and I'm sure they would have gone for that. But with the counselors occupied with kid wrangling, she would have been responsible for keeping up with it and would have been excluded from a lot of the activities that the other kids would be experiencing. We could have kept her home rather than run the risk of her getting into a situation where she needed it and didn't have it, and believe me, we considered it.
After I talked to the counselors and determined that at least one of them knows sign language, I decided to stop being such a worrying freak and just Let. Her. Go. The park is in the same city where I'm working, so I made sure they had my business card and could call if there was a problem or if she needed her device. I'm like five minutes away.
And so I sit here, trying not to be anxious and trying not to second-guess the decision to send her off to have a day of wordless summer fun. In theory, we've always said that her device is her voice and it should be with her at all times. In practice, that's not always feasible. When she's on the playground, for example, she doesn't take it since it could be damaged and she can't see the screen in direct sunlight anyway. Obviously, when she goes swimming, same thing. When she's older and can take more responsibility, that will change, I'm sure.
The difference this time is that she's going a whole day without it. I wish I knew that we'd made the right decision.
I spent the evening with a good friend of mine who works as a nanny, and there's a small chance that she may be able to watch Schuyler next summer. Here's hoping. She's Schuyler's favorite grown-up, and one of mine, too, come to think of it.
Her summer camp is going to an amusement park today, a big one, and none of the kids are bringing backpacks. We thought hard about what to do. We could have insisted that she be allowed to take it anyway, and I'm sure they would have gone for that. But with the counselors occupied with kid wrangling, she would have been responsible for keeping up with it and would have been excluded from a lot of the activities that the other kids would be experiencing. We could have kept her home rather than run the risk of her getting into a situation where she needed it and didn't have it, and believe me, we considered it.
After I talked to the counselors and determined that at least one of them knows sign language, I decided to stop being such a worrying freak and just Let. Her. Go. The park is in the same city where I'm working, so I made sure they had my business card and could call if there was a problem or if she needed her device. I'm like five minutes away.
And so I sit here, trying not to be anxious and trying not to second-guess the decision to send her off to have a day of wordless summer fun. In theory, we've always said that her device is her voice and it should be with her at all times. In practice, that's not always feasible. When she's on the playground, for example, she doesn't take it since it could be damaged and she can't see the screen in direct sunlight anyway. Obviously, when she goes swimming, same thing. When she's older and can take more responsibility, that will change, I'm sure.
The difference this time is that she's going a whole day without it. I wish I knew that we'd made the right decision.
I spent the evening with a good friend of mine who works as a nanny, and there's a small chance that she may be able to watch Schuyler next summer. Here's hoping. She's Schuyler's favorite grown-up, and one of mine, too, come to think of it.
June 21, 2006
I wasn't too smart back then, either.
For those of you who don't know that I was married previously, this might come as a bit of a surprise, but I realized something at lunch.
If I was still married to the First Mrs. Rob, today would be my twentieth wedding anniversary.
Man oh man. I feel a little like the dinosaur who managed to pull his foot free from the tar pit and walk away...
If I was still married to the First Mrs. Rob, today would be my twentieth wedding anniversary.
Man oh man. I feel a little like the dinosaur who managed to pull his foot free from the tar pit and walk away...
June 20, 2006
The Things We Fear
Julie sent me a link yesterday, to a site about a little three year-old girl in Connecticut named Faith Autumn Tremblay who suffers from a rare brain disorder called Periventricular Heterotopia. Julie heard about Faith from one of her friends back home in Connecticut whose company has partnered to help this family and who actually got to meet and spend time with her.
The story sounds familiar, with lots of testing and worrying and trying to identify a rare brain disorder. But it wasn't until I followed some of the links to learn more about Periventricular Heterotopia that I realized just how much she has in common with Schuyler. I recognized the name of the Christopher A. Walsh Laboratory in Boston as soon as I saw it.
Dr. Walsh is one of the doctors who, along with Dr. William Dobyns (the doctor in Chicago that we went to see last year), is a co-investigator in the Polymicrogyria Research Collaboration. It's an NIH-sponsored project to study the probable genetic causes of polymicrogyria (PMG), the group of disorders that includes Cogenital Bilateral Perisylvian Syndrome. The three of us provided DNA samples for this project while we were in Chicago. We are all about the science.
At this point, my interest in Faith's story became more immediate. In a very real sense, she's family. Faith's monster and Schuyler's monster are kissing cousins, after all. I went to do some reading on Periventricular Heterotopia, which like CBPS is an abnormality that occurs in the brain as it develops during pregnancy. It can even develop in association with other abnormalities like polymicrogyria.
Aside from some learning disabilities, it looks like patients with Periventricular Heterotopia don't usually suffer from other neurological disorders like Schuyler does. But the thing that they DO face is the thing that is probably still lurking in Schuyler's future.
Seizures. And bad ones. In Faith's case, they are extreme and life-threatening. The site doesn't make this clear, but this little girl has already flat-lined from her seizures on at least one occasion. She has my deepest sympathies, because her present life and struggle taps into my worst fears for Schuyler's future.
There's been a lot of talk about fear around here lately. And I'll admit, the anonymous threat that was posted here gave me pause. So did something else, something I didn't mention because I didn't want to tell Julie about it immediately. I finally told her tonight, and so now I can mention it here. A few hours after that threat was posted, I received a phone call at work, from what sounded like a woman trying to sound like a man. It was supposed to sound scary, and perhaps it would have if not for one tiny detail.
"See how easy it was to find you? It'll be just as easy to find SHOOLER."
If you're trying to be menacing, you might start by getting your target's name right.
I'm not afraid of anonymous callers or the Jane Book Club or anyone else capable of using Google or directory assistance.
I'm afraid of seizures.
I'm afraid of the monster that kills some kids with CBPS, because that's the thing, along with choking and breathing issues, that does it. Their parents have written to me, they've sent the most heartbreaking emails you can possibly imagine. Not many kids with seizures die from them, but if you're a parent, ask yourself how comforting that would be. I remember when Dr. Dobyns told us that only a few of his PMG patients have died from their seizures. That's great, Dr. Sunny Side. Thanks.
Schuyler does not suffer from seizures. She has problems with fine motor control, both in her hands and in her mouth, and some mild swallowing issues that she compensates for with a lot of success. She suffers from a very significant developmental delay, but it is unclear whether that is a result of some cognitive defect or her communication issues. And those issues are extreme; she can't speak, and she hasn't developed verbally in any significant way in probably three years. She is (and almost certainly will always be) mute, and Dr. Dobyns said she would be a clumsy girl for the rest of her life, but she doesn't have seizures.
Not yet. But two facts loom over her like the Sword of Damocles. The first fact: Dr. Dobyns estimated her chances of developing seizures at over 80%, probably between the ages of six and ten. The second fact: based on his examination of her MRI, Dobyns estimated that between sixty and seventy-five percent of Schuyler's brain is profoundly malformed. When he met Schuyler for the first time, he was surprised to see that not only was she not confined to a wheelchair, but was completely ambulatory and not visibly impaired in her physical development. In my book, I quote him:
"Now, this just illustrates exactly how little we still know about the human brain. From examining this MRI, I can tell you that I certainly didn't expect to walk in the room and find a little girl running around and playing like a neurotypical child. I wouldn't expect Schuyler to be functioning at a significant level mentally or physically, but there she is. She looks and behaves like any other kiddo, and she's obviously functioning cognitively at a reasonable level. Those affected areas of her brain are working, they’re doing something. We just have no idea how, or what her brain is capable of."
So when you wonder what we're afraid of, that's simple. We're not afraid of internet bullies hiding behind anonymity and private forums. We're afraid of Schuyler's mysterious, medically inexplicable brain and what it has in store for her. We're not afraid of someone stalking Schuyler because in a very real way, she is already being stalked.
We're afraid of Schuyler's monster.
The story sounds familiar, with lots of testing and worrying and trying to identify a rare brain disorder. But it wasn't until I followed some of the links to learn more about Periventricular Heterotopia that I realized just how much she has in common with Schuyler. I recognized the name of the Christopher A. Walsh Laboratory in Boston as soon as I saw it.
Dr. Walsh is one of the doctors who, along with Dr. William Dobyns (the doctor in Chicago that we went to see last year), is a co-investigator in the Polymicrogyria Research Collaboration. It's an NIH-sponsored project to study the probable genetic causes of polymicrogyria (PMG), the group of disorders that includes Cogenital Bilateral Perisylvian Syndrome. The three of us provided DNA samples for this project while we were in Chicago. We are all about the science.
At this point, my interest in Faith's story became more immediate. In a very real sense, she's family. Faith's monster and Schuyler's monster are kissing cousins, after all. I went to do some reading on Periventricular Heterotopia, which like CBPS is an abnormality that occurs in the brain as it develops during pregnancy. It can even develop in association with other abnormalities like polymicrogyria.
Aside from some learning disabilities, it looks like patients with Periventricular Heterotopia don't usually suffer from other neurological disorders like Schuyler does. But the thing that they DO face is the thing that is probably still lurking in Schuyler's future.
Seizures. And bad ones. In Faith's case, they are extreme and life-threatening. The site doesn't make this clear, but this little girl has already flat-lined from her seizures on at least one occasion. She has my deepest sympathies, because her present life and struggle taps into my worst fears for Schuyler's future.
There's been a lot of talk about fear around here lately. And I'll admit, the anonymous threat that was posted here gave me pause. So did something else, something I didn't mention because I didn't want to tell Julie about it immediately. I finally told her tonight, and so now I can mention it here. A few hours after that threat was posted, I received a phone call at work, from what sounded like a woman trying to sound like a man. It was supposed to sound scary, and perhaps it would have if not for one tiny detail.
"See how easy it was to find you? It'll be just as easy to find SHOOLER."
If you're trying to be menacing, you might start by getting your target's name right.
I'm not afraid of anonymous callers or the Jane Book Club or anyone else capable of using Google or directory assistance.
I'm afraid of seizures.
I'm afraid of the monster that kills some kids with CBPS, because that's the thing, along with choking and breathing issues, that does it. Their parents have written to me, they've sent the most heartbreaking emails you can possibly imagine. Not many kids with seizures die from them, but if you're a parent, ask yourself how comforting that would be. I remember when Dr. Dobyns told us that only a few of his PMG patients have died from their seizures. That's great, Dr. Sunny Side. Thanks.
Schuyler does not suffer from seizures. She has problems with fine motor control, both in her hands and in her mouth, and some mild swallowing issues that she compensates for with a lot of success. She suffers from a very significant developmental delay, but it is unclear whether that is a result of some cognitive defect or her communication issues. And those issues are extreme; she can't speak, and she hasn't developed verbally in any significant way in probably three years. She is (and almost certainly will always be) mute, and Dr. Dobyns said she would be a clumsy girl for the rest of her life, but she doesn't have seizures.
Not yet. But two facts loom over her like the Sword of Damocles. The first fact: Dr. Dobyns estimated her chances of developing seizures at over 80%, probably between the ages of six and ten. The second fact: based on his examination of her MRI, Dobyns estimated that between sixty and seventy-five percent of Schuyler's brain is profoundly malformed. When he met Schuyler for the first time, he was surprised to see that not only was she not confined to a wheelchair, but was completely ambulatory and not visibly impaired in her physical development. In my book, I quote him:
"Now, this just illustrates exactly how little we still know about the human brain. From examining this MRI, I can tell you that I certainly didn't expect to walk in the room and find a little girl running around and playing like a neurotypical child. I wouldn't expect Schuyler to be functioning at a significant level mentally or physically, but there she is. She looks and behaves like any other kiddo, and she's obviously functioning cognitively at a reasonable level. Those affected areas of her brain are working, they’re doing something. We just have no idea how, or what her brain is capable of."
So when you wonder what we're afraid of, that's simple. We're not afraid of internet bullies hiding behind anonymity and private forums. We're afraid of Schuyler's mysterious, medically inexplicable brain and what it has in store for her. We're not afraid of someone stalking Schuyler because in a very real way, she is already being stalked.
We're afraid of Schuyler's monster.
June 19, 2006
One more parenting revelation
When you as an alleged adult have a very small injury and are at home, it is entirely possible that you will end up going to work wearing a Dora the Explorer Band-Aid.
June 18, 2006
Silent but Deadly (repost)
(Reposted from last Friday. Let's try this again.)
I think it's safe to say that when she showed up at Summer Camp in time to see Schuyler sitting on top of another, much larger kid while choking him and ignoring the teenaged counselors as they told her to, you know, like, stop and stuff, Julie had some concerns.
I'm pretty convinced that it was a case of wrestling and horsing around that got out of hand, but still. That's a disturbing thing to hear about your sweet princess, your pretty ninja. Choking a kid? What the fuck? And why was she ignoring the staff? When she finally was pulled off the other kid, she then ran off and refused to cooperate.
The thing is, this is the sort of stuff that the rest of you deal with all the time. Little kids are barbarians. They are figuring out where the lines are, what they are allowed to do as primal being and what rules govern them as humans. Without those rules and that guidance, you get Lord of the Flies. So I understand that it's an important part of every kid's normal development, and I'm trying to stay cool about it.
With Schuyler, there is the added burden of finding a way for her to express her anger and, as I've mentioned before, to tell her side of the story. I know she's been bullied by neurotypical kids who take advantage of her lack of a voice to spin their own versions of "okay, so here's how it went down". I've watched it happen before, and not just with strangers.
It's bad enough that she can only give her side of the story in simple verbal expressions, sign language and miming the action. But when she is upset and tries to use her Big Box of Words, Schuyler freezes up. She becomes daunted and punches buttons helplessly before finally giving up in frustration. She's a little like Melville's stammering Billy Budd, who is so upset at false accusations of mutiny that he is unable to answer with his voice and instead strikes and kills his accuser, and therefore himself.
I keep telling myself that Schuyler is better off in this environment, that for all the dangers and all the obstacles, she will benefit from making her way in that grand rough neurotypical world for a few short summer months before returning to the shelter of her Box Class.
I'll let you know when I actually convince myself.
I think it's safe to say that when she showed up at Summer Camp in time to see Schuyler sitting on top of another, much larger kid while choking him and ignoring the teenaged counselors as they told her to, you know, like, stop and stuff, Julie had some concerns.
I'm pretty convinced that it was a case of wrestling and horsing around that got out of hand, but still. That's a disturbing thing to hear about your sweet princess, your pretty ninja. Choking a kid? What the fuck? And why was she ignoring the staff? When she finally was pulled off the other kid, she then ran off and refused to cooperate.
The thing is, this is the sort of stuff that the rest of you deal with all the time. Little kids are barbarians. They are figuring out where the lines are, what they are allowed to do as primal being and what rules govern them as humans. Without those rules and that guidance, you get Lord of the Flies. So I understand that it's an important part of every kid's normal development, and I'm trying to stay cool about it.
With Schuyler, there is the added burden of finding a way for her to express her anger and, as I've mentioned before, to tell her side of the story. I know she's been bullied by neurotypical kids who take advantage of her lack of a voice to spin their own versions of "okay, so here's how it went down". I've watched it happen before, and not just with strangers.
It's bad enough that she can only give her side of the story in simple verbal expressions, sign language and miming the action. But when she is upset and tries to use her Big Box of Words, Schuyler freezes up. She becomes daunted and punches buttons helplessly before finally giving up in frustration. She's a little like Melville's stammering Billy Budd, who is so upset at false accusations of mutiny that he is unable to answer with his voice and instead strikes and kills his accuser, and therefore himself.
I keep telling myself that Schuyler is better off in this environment, that for all the dangers and all the obstacles, she will benefit from making her way in that grand rough neurotypical world for a few short summer months before returning to the shelter of her Box Class.
I'll let you know when I actually convince myself.
June 16, 2006
Too Far
Okay, so if you didn't see it, there was an ugly incident in the comments area of my last (and now deleted) entry. A bunch of people from a private forum showed up and piled on, and I approved all of them in the interest of trying to be fair (and interesting, to be honest). Some of them were sort of nasty, calling Schuyler a brat and bully, but whatever. I know Schuyler, and enough of you have met her or know her and know she's neither, so it was more amusing than anything else. Hateful people have their own internal monologue, and God bless 'em for it. I hope the sky in their world is a pretty color.
But then it happened.
And that was it. That was the line. That was the first and last time anyone will ever threaten Schuyler on this website. I'm not sure how we're going to address this, since my presence on the web is part of what is being sold to editors by my agent. Going away completely feels like an overreaction.
But things will have to be different. For now, I'm going to go through and delete all the references to where we live, and I'm hiding (and turning off) the comments. That's obviously not going to stop anyone who's already been reading and preparing to beat the shit out of a six year-old, but it's a start. Today wouldn't have happened if not for the mob mentality and the piling on. I won't provide the platform for that kind of thing.
As soon as I saw the comment, I called Julie on the very remote chance that this threat was more than just someone trying to be an ass and going too far, which is honestly what I think it was. I needed her to be a little extra aware and vigilant.
From her reaction, I can tell whoever it was that left that comment, as well as your hateful friends, that you can be certain of one thing.
If you do actually try to harm our daughter, it will end tragically, and not for Schuyler or for us.
Julie and I can't be any more clear than that.
I'll be back when I know what to do here.
But then it happened.
Rob, I just want you to know that if I ever see your kid in public (and since you've nicely told everyone where you live, that shouldn't be too hard to arrange), I'm not going to wait for her to attack. I'm going to beat the shit out of her right then and there and see if she learns a lesson.
And that was it. That was the line. That was the first and last time anyone will ever threaten Schuyler on this website. I'm not sure how we're going to address this, since my presence on the web is part of what is being sold to editors by my agent. Going away completely feels like an overreaction.
But things will have to be different. For now, I'm going to go through and delete all the references to where we live, and I'm hiding (and turning off) the comments. That's obviously not going to stop anyone who's already been reading and preparing to beat the shit out of a six year-old, but it's a start. Today wouldn't have happened if not for the mob mentality and the piling on. I won't provide the platform for that kind of thing.
As soon as I saw the comment, I called Julie on the very remote chance that this threat was more than just someone trying to be an ass and going too far, which is honestly what I think it was. I needed her to be a little extra aware and vigilant.
From her reaction, I can tell whoever it was that left that comment, as well as your hateful friends, that you can be certain of one thing.
If you do actually try to harm our daughter, it will end tragically, and not for Schuyler or for us.
Julie and I can't be any more clear than that.
I'll be back when I know what to do here.
June 13, 2006
Breakfast with Rob
Good morning, kids! Say, what's for breakfast? Here's what's on the menu today:
Metformin ER. (generic form of Glucophage XR) This is the primary drug addressing high blood sugar for type 2 diabetics. If you know a type 2 diabetic, they are probably taking some form of this, unless they reached their "fuck THIS" stage and gave it up. Each pill is huge; they come in a bottle roughly the size and shape of a Red Bull can.
Potential Side Effects: Good lord. One 500mg pill did nothing to or for me, two made me vaguely nauseous and fatigued. It was when I went up to three that the real fun began. Extreme nausea, diarrhea cha cha cha, and a fun thing where you burp a lot and the burps taste like you have been eating a skunk, ass first. I finally had enough and stopped taking them while I was working over the weekend, and guess what happened? I INSTANTLY felt 100% better.
Actos. This is another drug for high blood sugar. Starting today, I'm taking one of these a day instead of that third Metformin.
Potential Side Effects: A whole new set of possibilities! Shakiness, dizziness, sweating, confusion (beyond my usual level, I assume), nervousness or irritability, mood swings, headache, facial numbness, pale skin, sudden hunger, and my favorite, seizures! Wouldn't it be ironic if I got seizures before Schuyler? I went and read what other patients said about Actos, and a lot of them complain about weight gain. Which is funny, since two of the other drugs I'm taking are supposed to cause weight loss. A war is shaping up inside the Rob!
Lisinopril. Okay, so this is the thing I didn't want to talk about last time. This drug is normally used to address high blood pressure, but my BP is normal. In my case, it is being prescribed to arrest and hopefully reverse early signs of kidney failure. Yeah, that's the thing I didn't and don't so much want to talk about.
Potential Side Effects: Dizziness, headache, fatigue, dry cough, muscle cramps, numbness, nausea and diarrhea (well, of course), and a rash (delightful!).
Phentermine. This is my supermodel diet pill.
Potential Side Effects: Restlessness, nervousness, anxiety, headache, insomnia, cha cha cha, and extreme sexiness! Oh, and it is habit forming.
Cinnamon Bark. This is my new age natural supplement to address high blood sugar. No idea if it works.
Potential Side Effects: No idea. Cinnamon taste will make me a more attractive target for cannibals and vampires. Fucking vampires, man. As if life wasn't hard enough already.
Banana. A tasty treat.
Potential Side Effects: Improper disposal of the peel may result in comical injury.
Metformin ER. (generic form of Glucophage XR) This is the primary drug addressing high blood sugar for type 2 diabetics. If you know a type 2 diabetic, they are probably taking some form of this, unless they reached their "fuck THIS" stage and gave it up. Each pill is huge; they come in a bottle roughly the size and shape of a Red Bull can.
Potential Side Effects: Good lord. One 500mg pill did nothing to or for me, two made me vaguely nauseous and fatigued. It was when I went up to three that the real fun began. Extreme nausea, diarrhea cha cha cha, and a fun thing where you burp a lot and the burps taste like you have been eating a skunk, ass first. I finally had enough and stopped taking them while I was working over the weekend, and guess what happened? I INSTANTLY felt 100% better.
Actos. This is another drug for high blood sugar. Starting today, I'm taking one of these a day instead of that third Metformin.
Potential Side Effects: A whole new set of possibilities! Shakiness, dizziness, sweating, confusion (beyond my usual level, I assume), nervousness or irritability, mood swings, headache, facial numbness, pale skin, sudden hunger, and my favorite, seizures! Wouldn't it be ironic if I got seizures before Schuyler? I went and read what other patients said about Actos, and a lot of them complain about weight gain. Which is funny, since two of the other drugs I'm taking are supposed to cause weight loss. A war is shaping up inside the Rob!
Lisinopril. Okay, so this is the thing I didn't want to talk about last time. This drug is normally used to address high blood pressure, but my BP is normal. In my case, it is being prescribed to arrest and hopefully reverse early signs of kidney failure. Yeah, that's the thing I didn't and don't so much want to talk about.
Potential Side Effects: Dizziness, headache, fatigue, dry cough, muscle cramps, numbness, nausea and diarrhea (well, of course), and a rash (delightful!).
Phentermine. This is my supermodel diet pill.
Potential Side Effects: Restlessness, nervousness, anxiety, headache, insomnia, cha cha cha, and extreme sexiness! Oh, and it is habit forming.
Cinnamon Bark. This is my new age natural supplement to address high blood sugar. No idea if it works.
Potential Side Effects: No idea. Cinnamon taste will make me a more attractive target for cannibals and vampires. Fucking vampires, man. As if life wasn't hard enough already.
Banana. A tasty treat.
Potential Side Effects: Improper disposal of the peel may result in comical injury.
June 9, 2006
I thought drugs were supposed to be fun.
I wonder if I'll get fired from my diabetes blog for what must surely be the very worst blog post ever. It's a very real possibility.
I know I was pretty upbeat last time about my health, but the past two days haven't gone so well. One of the things that Dr. Hottie did was increase my daily dosage of Metformin (the poor man's Glucophage) by another 500mg, and that, possibly along with the Supermodel Diet Pills, has caused my body to reject the very idea of human life in a rather dramatic way. I won't go into a great amount of detail except to say that I'm glad our apartment has two toilets. You figure it out.
I got a call today from Dr. Hottie's office with results from my last round of tests, and it was basically one of those "I've got some bad news and I've got some good news" calls.
Oo, that reminds me of an old favorite joke!
A man has been having serious dental problems, so he goes to see an oral surgeon. The surgeon examines his mouth and then goes off to analyze the results. After a while, he comes back into the office and sits down with his patient. His face is somber.
"Well," he says, "I have some bad news, and then I've got some REALLY bad news. But then I have some good news."
"The bad news," he continues, "is that a rare but serious infection has attacked your teeth. I'm afraid we're going to have to pull every single one of them out."
"Oh my God, that's terrible!" the man cries. "I can't imagine what the REALLY bad news could be!"
"Oh, it's bad," the doctor says. "It turns out that the infection has also moved into your gums. We're going to have to actually go in and file your gums down, all the way to the bone."
By now the man is in tears. "That's horrible," he says. "What good news could you possibly have?"
The doctor looks up at him. "Did you see that good looking receptionist at the front desk when you came in?"
"Yeah?" says the man.
"Well, I'm banging her."
Ha! Anyway.
So the good news is that my blood sugar is actually coming down, slowly but steadily. It's still too high, but not crazy high. More wacky high now.
The bad news, well, just this once I'm going to keep it to myself for a while. I know it sucks to mention something on a blog and then be all "But I can't tell you, tee hee hee!", but we're still processing it and sorting out what it means and what we'll have to do about it. It was unexpected, I'll say that much.
I'm embarking on a crazy weekend where I'm shooting two weddings in two different towns, neither of them local or even all that close, and also working a bridal expo. That's a lot of pretending to be a nice person. This is the first time I've ever been concerned about actually making it through a gig, but I think I'll be okay. The truth is, I feel best when I'm shooting, with all the moving around and thinking on my feet. It's when I'm sitting on the couch watching Battlestar Galactica reruns all day like today that I feel bad.
You know, I'm standing by my assertion that the Diabetes Notes post I mentioned earlier is the worst blog post ever, but now that I look back on it, I think this one maybe runs a close second.
I know I was pretty upbeat last time about my health, but the past two days haven't gone so well. One of the things that Dr. Hottie did was increase my daily dosage of Metformin (the poor man's Glucophage) by another 500mg, and that, possibly along with the Supermodel Diet Pills, has caused my body to reject the very idea of human life in a rather dramatic way. I won't go into a great amount of detail except to say that I'm glad our apartment has two toilets. You figure it out.
I got a call today from Dr. Hottie's office with results from my last round of tests, and it was basically one of those "I've got some bad news and I've got some good news" calls.
Oo, that reminds me of an old favorite joke!
A man has been having serious dental problems, so he goes to see an oral surgeon. The surgeon examines his mouth and then goes off to analyze the results. After a while, he comes back into the office and sits down with his patient. His face is somber.
"Well," he says, "I have some bad news, and then I've got some REALLY bad news. But then I have some good news."
"The bad news," he continues, "is that a rare but serious infection has attacked your teeth. I'm afraid we're going to have to pull every single one of them out."
"Oh my God, that's terrible!" the man cries. "I can't imagine what the REALLY bad news could be!"
"Oh, it's bad," the doctor says. "It turns out that the infection has also moved into your gums. We're going to have to actually go in and file your gums down, all the way to the bone."
By now the man is in tears. "That's horrible," he says. "What good news could you possibly have?"
The doctor looks up at him. "Did you see that good looking receptionist at the front desk when you came in?"
"Yeah?" says the man.
"Well, I'm banging her."
Ha! Anyway.
So the good news is that my blood sugar is actually coming down, slowly but steadily. It's still too high, but not crazy high. More wacky high now.
The bad news, well, just this once I'm going to keep it to myself for a while. I know it sucks to mention something on a blog and then be all "But I can't tell you, tee hee hee!", but we're still processing it and sorting out what it means and what we'll have to do about it. It was unexpected, I'll say that much.
I'm embarking on a crazy weekend where I'm shooting two weddings in two different towns, neither of them local or even all that close, and also working a bridal expo. That's a lot of pretending to be a nice person. This is the first time I've ever been concerned about actually making it through a gig, but I think I'll be okay. The truth is, I feel best when I'm shooting, with all the moving around and thinking on my feet. It's when I'm sitting on the couch watching Battlestar Galactica reruns all day like today that I feel bad.
You know, I'm standing by my assertion that the Diabetes Notes post I mentioned earlier is the worst blog post ever, but now that I look back on it, I think this one maybe runs a close second.
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