I'm sort of a bad person, because when I have to attend meetings for parents at Schuyler's school, I last about ten minutes before I start twitching and spazzing and fucking off. I'm that one person who can't sit still and who sighs dramatically when other parents ask questions like, "So on the days when it gets up past 100 degrees, do you take the kids outside at recess?"
I wish I were making that up.
So when we went to the big First Grade Parent/Teacher End-All Hootenanny of Hootenannies, Julie paid attention and actually learned some stuff while Schuyler and I mocked the principal's presentation by making the little "blah blah blah" talking hands at each other. (Imagine David Byrne in his big suit in the "Once in a Lifetime" video; "You may ask yourself...")
So yeah, we were a bad little scene, but I'm not sure what to tell you. Schuyler and I are the same in so many of our personality quirks, and our impatience with time wasting is one of them. I can't speak for Mister "Stupid Hot Day Question" Dad, but I don't actually require, when handed a handbook for parents, to then have all the teachers take turns showing it, page by page, in a PowerPoint presentation while READING it aloud to me. I thought we did pretty well, considering I'll one day be lying in bed, old-man-stinky and dying, and one of the last things I'll wheeze out in a raspy voice will be, "Goddamn it, I wish I had that hour back right now..."
I think Schuyler's going to fare pretty well this year. As always, she wasn't the slightest bit apprehensive about going back to school. Schuyler feeds on the new, and she loves meeting new people. Some kids don't handle change very well, but Schuyler is almost the opposite, like me. She gets bored with routine, and when she senses me getting bored, too, well, it's time to break out the David Byrne hands. The nice part is that when the other parents stare at her, which a surprising number of them were doing, the chances are at least even that it's not just her enthusiastic but non-sensical Schuylerese they are reacting to. It could be her pink punkass hair or her father-induced squirrelly behavior. Not everyone knows what to do with a beautiful freak.
Finally, after sitting through the meeting for about seven hours (internal measurement; one actual hour), we left the school and went our separate ways, Julie to go to the store and Schuyler and I to go home. In the car, Schuyler and I sung and danced around to our current favorite "Father/daughter funk track", which coincidentally, is a song by David Byrne, "U.B. Jesus". If you're not a David Byrne fan, I don't know what to tell you. You might just be dead to me now.
We always save our most enthusiastic jumping around (and get the most stares from the No-longer-quite-so-young Republicans and MILF-wannabes in the cars around us) for the part where the song kicks into overdrive.
Jump Back, Jump Back
Givin' me a heart attack
Fall down, Fall down
Sweeter than a cherry bomb
Sweet Thing, Sweet Thing
Steppin' on your violin
Space Boy, Fly Girl
Living in the underworld
When I sang that last part to her, she clapped and laughed her little head off.
"Who's Space Boy?" I asked her. She pointed at me.
"And who's Fly Girl?" She pointed to herself in triumph and started dancing some more.
So there you go. Same as it ever was.
August 16, 2006
August 10, 2006
Queen of Butterflies
Sometimes cool stuff happens because I have a blog.
Such as this very cool art created for Schuyler by my friend Beth at DarnLucky.com. She was inspired by my recent entry about taking Schuyler to Mexico to see the butterfly sanctuaries (a trip that I am now more determined than ever to take her on one day).
I already ordered a print of it and am going to have it framed when it gets here. Then I am going to give it to Schuyler and watch her tiny head explode with joy.
Celebrating Schuyler is something I will never do half-heartedly. She is the reason I do anything in this world, she is the person who never disappoints me and never looks at me with disdain or anything less than total love. At the end of my days, she's the one who'll be standing beside me, and when I am gone, she's the one who'll remember that I was here and that I loved, too much and imperfectly sometimes, but never with anything less than my whole heart.
Anyway, thank you, Beth. Very very cool.
Such as this very cool art created for Schuyler by my friend Beth at DarnLucky.com. She was inspired by my recent entry about taking Schuyler to Mexico to see the butterfly sanctuaries (a trip that I am now more determined than ever to take her on one day).
I already ordered a print of it and am going to have it framed when it gets here. Then I am going to give it to Schuyler and watch her tiny head explode with joy.
Celebrating Schuyler is something I will never do half-heartedly. She is the reason I do anything in this world, she is the person who never disappoints me and never looks at me with disdain or anything less than total love. At the end of my days, she's the one who'll be standing beside me, and when I am gone, she's the one who'll remember that I was here and that I loved, too much and imperfectly sometimes, but never with anything less than my whole heart.
Anyway, thank you, Beth. Very very cool.
I feel like the oldest old man in Old Man Town.
Yesterday was Schuyler's first day back in school. For those of you who have been reading for a while and would like to feel the tread of Father Time's birkenstocks as he walks over your face, she is entering the first grade.
My first thought was, "That's weird. When did they start accepting babies into the first grade?"
So yeah, I'm clearly in denial.
It was a strange day for Schuyler. This was her first day in the new school uniform, which looks sharp on her if I do say so myself, and I do. It was also mostly an orientation day, and not the only one. Her box class wont actually begin until next week, so she's spending these first few days as a mainstream student. I'm both nervous and curious to see how that works out.
A boring story, I know, but it has a dramatic conclusion. The bus that was supposed to bring her home after school was running late, so Julie called me to tell me and then called the transportation office.
And that's how she discovered that Schuyler had been dropped off at THE WROOOONG FUH-KING LOCAAAATION.
The drama was short-lived. Julie quickly discovered that Schuyler had been taken to the YMCA (her after school provider last year) by mistake, thanks (I think, although it's not clear at this point) to her school using a list from last year. Schuyler got intercepted by some staff who remembered her, and she was wearing her gimp tag, so it wasn't like she was standing at the side of the road somewhere, silently thumbing a ride.
Still, she was at a location where no one was legally responsible for her safety and where, since she wasn't on the YMCA's list, she could theoretically have been taken away by child molesters or cannibals or the Jane Book Club and no one would have necessarily stopped them. So it was a big deal. Julie and I were still twitchy hours later.
Perhaps not coincidentally, I think I have two spots at my temples that appear to be going grey. I noticed them this morning.
My first thought was, "That's weird. When did they start accepting babies into the first grade?"
So yeah, I'm clearly in denial.
It was a strange day for Schuyler. This was her first day in the new school uniform, which looks sharp on her if I do say so myself, and I do. It was also mostly an orientation day, and not the only one. Her box class wont actually begin until next week, so she's spending these first few days as a mainstream student. I'm both nervous and curious to see how that works out.
A boring story, I know, but it has a dramatic conclusion. The bus that was supposed to bring her home after school was running late, so Julie called me to tell me and then called the transportation office.
And that's how she discovered that Schuyler had been dropped off at THE WROOOONG FUH-KING LOCAAAATION.
The drama was short-lived. Julie quickly discovered that Schuyler had been taken to the YMCA (her after school provider last year) by mistake, thanks (I think, although it's not clear at this point) to her school using a list from last year. Schuyler got intercepted by some staff who remembered her, and she was wearing her gimp tag, so it wasn't like she was standing at the side of the road somewhere, silently thumbing a ride.
Still, she was at a location where no one was legally responsible for her safety and where, since she wasn't on the YMCA's list, she could theoretically have been taken away by child molesters or cannibals or the Jane Book Club and no one would have necessarily stopped them. So it was a big deal. Julie and I were still twitchy hours later.
Perhaps not coincidentally, I think I have two spots at my temples that appear to be going grey. I noticed them this morning.
August 8, 2006
Wings
Note: I'm posting limited comments for this entry.
-----
"We are like butterflies who flutter for a day and think it's forever." -- Carl Sagan
If you are an old friend of mine, you've heard about this before, so sorry. But it occurred to me recently that I don't think I've written about this in any recent version of my online jabber. It's an important Rob Fact.
About twenty years ago, I was sitting around watching television sort of aimlessly (some behaviors are eternal, I suppose) when a program came on about Monarch butterflies. By the time it was over, something had changed in me.
It told how every fourth or fifth generation or so, Monarchs cross North America by the millions, flying south from as far north as Canada at a rate of about 80 miles a day, braving birds and weather and the destructive human stain on the world, until they reach a cool mountain pass in the volcanic highlands of Mexico. Scientists have no idea how they manage it. The butterflies that actually make the journey have never done it before; they are the great, great grandchildren of the previous travellers.
When they get there, the Monarchs congregate in groups so huge that the branches of the trees bend and touch the ground from the weight of them. They meet and they have sex and lay their eggs, and then they die. Their children fly north and start the whole thing over again.
I knew then, even as a stupid teenager, that I wanted to go to Mexicao and experience it one day. For twenty years, it has remained the only dream of mine that has never wavered.
It's funny how many times I've shared this dream, with wives and ex-wives and lovers and friends. And despite the fact that a number of people over the years have expressed an interest in going with me, I think I always felt deep down that when I do eventually go, it would be one of two ways.
Alone, or carried by someone who loves me, in an urn.
I have no idea how it'll happen. I'm in better shape than I've been since high school; I'm actually closing in on weighing the same as I did when I first learned about the Monarchs. I'm healthier now than ever in some ways, and sicker than ever in others. It's a weird sensation, being thinner and fitter and yet waking up some days feeling old and worn down.
But if I stay healthy enough for a bit longer, there may come a day when I limp into the cool shade of a quiet Mexican mountain pass and hear the unimaginable sound of millions of tiny flapping wings. And if I'm lucky, I'll have company, perhaps the company I was destined to have all along and never even knew it. She won't be much of a conversationalist, but she'll sign "butterfly" because she loves them, too. She'll share the experience that I've dreamed of since I was young and the future stretched in front of me, a future full of promise and still empty of monsters.
If not, I hope that one day she'll go there for me, my ashes in her backpack next to her Big Box of Words, and be the last person to say goodbye to me.
-----
"We are like butterflies who flutter for a day and think it's forever." -- Carl Sagan
If you are an old friend of mine, you've heard about this before, so sorry. But it occurred to me recently that I don't think I've written about this in any recent version of my online jabber. It's an important Rob Fact.
About twenty years ago, I was sitting around watching television sort of aimlessly (some behaviors are eternal, I suppose) when a program came on about Monarch butterflies. By the time it was over, something had changed in me.
It told how every fourth or fifth generation or so, Monarchs cross North America by the millions, flying south from as far north as Canada at a rate of about 80 miles a day, braving birds and weather and the destructive human stain on the world, until they reach a cool mountain pass in the volcanic highlands of Mexico. Scientists have no idea how they manage it. The butterflies that actually make the journey have never done it before; they are the great, great grandchildren of the previous travellers.
When they get there, the Monarchs congregate in groups so huge that the branches of the trees bend and touch the ground from the weight of them. They meet and they have sex and lay their eggs, and then they die. Their children fly north and start the whole thing over again.
I knew then, even as a stupid teenager, that I wanted to go to Mexicao and experience it one day. For twenty years, it has remained the only dream of mine that has never wavered.
It's funny how many times I've shared this dream, with wives and ex-wives and lovers and friends. And despite the fact that a number of people over the years have expressed an interest in going with me, I think I always felt deep down that when I do eventually go, it would be one of two ways.
Alone, or carried by someone who loves me, in an urn.
I have no idea how it'll happen. I'm in better shape than I've been since high school; I'm actually closing in on weighing the same as I did when I first learned about the Monarchs. I'm healthier now than ever in some ways, and sicker than ever in others. It's a weird sensation, being thinner and fitter and yet waking up some days feeling old and worn down.
But if I stay healthy enough for a bit longer, there may come a day when I limp into the cool shade of a quiet Mexican mountain pass and hear the unimaginable sound of millions of tiny flapping wings. And if I'm lucky, I'll have company, perhaps the company I was destined to have all along and never even knew it. She won't be much of a conversationalist, but she'll sign "butterfly" because she loves them, too. She'll share the experience that I've dreamed of since I was young and the future stretched in front of me, a future full of promise and still empty of monsters.
If not, I hope that one day she'll go there for me, my ashes in her backpack next to her Big Box of Words, and be the last person to say goodbye to me.
August 6, 2006
Beautiful freak
Hiding from the sun.
Originally uploaded by Citizen Rob.
You're such a beautiful freak
I wish there were more just like you
Youre not like all of the others
And that is why I love you
Beautiful freak, beautiful freak
That is why I love you
Beautiful freak, beautiful freak
Some people think you have a problem
But that problem lies only with them
Just cause you are not like the others
But that is why I love you
Beautiful freak, beautiful freak
Yeah that is why I love you
Beautiful freak, beautiful freak
Too good for this world
But I hope you will stay
And Ill be here to see that you dont fade away
Youre such a beautiful freak
I bet you are flying inside
Dart down and then go for cover
And know that I
I love you
Beautiful freak,
You know that I
I love you
Beautiful freak, beautiful freak
-- Eels, "Beautiful Freak"
August 4, 2006
A blast from the past
I found a disk full of archived material from like five years ago, and while going though some old emails, I just found a message I sent to my old notify list. And while I could try to put it in some sort of context for you, I actually think it reads better without it. Enjoy...
---
To: Book of Rob Notify List
From: Rob Rummel-Hudson
Subject: Apology of sorts, and an explanation of sorts
Date: Fri, 27 Apr 2001
Hi, all.
Okay, so if you read my new entry before noon today, you probably saw a link to an interview with me. You might have even seen it soon enough to actually read the interview.
But chances are pretty good that at some point, the people who clicked on that link stopped going to an interview with me and were instead getting a page with a big penis on it.
And while there are many of you out there who no doubt find that both appropriate and just that a supposed interview with me would actually contain instead a big penis photo, there are doubtless many more of you who did not in fact expect or desire to see a big penis on your screen when you trusted me and clicked that link. And I suspect some of you were at work at the time. "Can you step into my office? We need to discuss the big penis on your PC..."
I just wanted to apologize to anyone who was offended by that big penis. I had no idea that between the time I posted that link and today, the site would, out of nowhere, disappear and be replaced with a big penis. I was not informed that the interview to which I had linked would in fact be replaced by a big penis.
I was only informed of the presence of the big penis at the other end of the link -- a link that my in-laws would follow (confession: that idea cracked me up a little), a link that my MOTHER would eventually click and say "Why, that is not an interview with my son, that is in fact a big hairy cock!" -- I was only told of it when my friend Joe (who, remember, likes to watch) wrote to tell me about the big penis.
I am annoyed. It was embarrassing and a little humiliating, fodder for jokes from all the chattering little assmonkeys who watch me and wait for me to stumble so they can go back to their unreadable little sites and write with stuttering glee about Rob and the Giant Penis. (That's a Dahl story, I believe.)
So my apologies to anyone who got an unexpected big penis on your screen. I'm not any happier about it than you.
It was not an attractive big penis, either.
-- rob
---
To: Book of Rob Notify List
From: Rob Rummel-Hudson
Subject: Apology of sorts, and an explanation of sorts
Date: Fri, 27 Apr 2001
Hi, all.
Okay, so if you read my new entry before noon today, you probably saw a link to an interview with me. You might have even seen it soon enough to actually read the interview.
But chances are pretty good that at some point, the people who clicked on that link stopped going to an interview with me and were instead getting a page with a big penis on it.
And while there are many of you out there who no doubt find that both appropriate and just that a supposed interview with me would actually contain instead a big penis photo, there are doubtless many more of you who did not in fact expect or desire to see a big penis on your screen when you trusted me and clicked that link. And I suspect some of you were at work at the time. "Can you step into my office? We need to discuss the big penis on your PC..."
I just wanted to apologize to anyone who was offended by that big penis. I had no idea that between the time I posted that link and today, the site would, out of nowhere, disappear and be replaced with a big penis. I was not informed that the interview to which I had linked would in fact be replaced by a big penis.
I was only informed of the presence of the big penis at the other end of the link -- a link that my in-laws would follow (confession: that idea cracked me up a little), a link that my MOTHER would eventually click and say "Why, that is not an interview with my son, that is in fact a big hairy cock!" -- I was only told of it when my friend Joe (who, remember, likes to watch) wrote to tell me about the big penis.
I am annoyed. It was embarrassing and a little humiliating, fodder for jokes from all the chattering little assmonkeys who watch me and wait for me to stumble so they can go back to their unreadable little sites and write with stuttering glee about Rob and the Giant Penis. (That's a Dahl story, I believe.)
So my apologies to anyone who got an unexpected big penis on your screen. I'm not any happier about it than you.
It was not an attractive big penis, either.
-- rob
August 2, 2006
Holy Crap, Revisited
To everyone out there who is shocked, SHOCKED, at the revelation that Mel Gibson...
...might just be a gigantic anti-Semite after all, I really don't have a lot to say to you, other than this.
Told you so.
"Fucking Jews... The Jews are responsible for all the wars in the world."
...might just be a gigantic anti-Semite after all, I really don't have a lot to say to you, other than this.
Told you so.
July 31, 2006
I am the Bug Whisperer.
Dragonfly
Originally uploaded by Citizen Rob.
You know, I don't really have much to say today. The girls are still gone and I am sitting at work far later than usual because, well, it's nice to use a computer that actually functions.
(I got repair estimates today on the iBook (now retamed "iTard" after its latest meltdown), and it's not pretty. Mac users, listen to me. Listen closely. Get AppleCare. Is it a ripoff? Perhaps, but when your logic board fails, you will cry like a little girl. Pay it. It's like mafia protection. You have to pay up, doesn't matter if the thing the mob is protecting you from is the mob.)
The weekend was spent taking LOTS of cool photos. The most unexpected came when I went with a photographer I occasionally work for to the Zilker Park Botanical Gardens in Austin to assist in two engagement shoots. During the time that she was actually taking photos of the happy couples, I was poking around the place, taking more photos of pretty flowers (the names of which I neither know nor particularly care about).
And that's when I discovered that I am beloved amongst dragonflies. I've taken a lot of nature photos, but these might just be my favorites so far.
Although I dig the vultures, too. How creepy is THAT?
July 28, 2006
Leaving on a jet plane...
Fall colors are here early.
Originally uploaded by Citizen Rob.
Is it pink or is it purple?
Either way, Homeland Security is going to stop her in the airport for sure now. She's the world's shortest anarchist.
-----
Update: They got there okay. I'm going to start breathing again, if that's okay with you.
Throw my iBook into the light...
...because I think it is ready for the next world. I keep reporting its death and then manage to reanimate its stinking corpse for a few more weeks, but this time I think it might have shed its Lazarethesque rebound capabilities for good.
And I'm leaving for three days tomorrow, with neither the time nor the resources to devote to squeezing a bit more life out of it. So you know what? Screw this, I'll deal with it later.
I'll try to get on periodically and approve comments from time to time. If you need to write me, it's probably best to do so at rhudsonphoto@gmail.com for the time being.
Have a nice weekend, by golly.
And I'm leaving for three days tomorrow, with neither the time nor the resources to devote to squeezing a bit more life out of it. So you know what? Screw this, I'll deal with it later.
I'll try to get on periodically and approve comments from time to time. If you need to write me, it's probably best to do so at rhudsonphoto@gmail.com for the time being.
Have a nice weekend, by golly.
July 27, 2006
Pre-fret fret
Julie and Schuyler are going away for five days, off to Michigan to visit her family. They leave tomorrow.
It's not going to be as bad as it sounds for me, since I am also going to be gone as well, shooting a wedding out of town. Still, five days is a long time. Also, they'll be flying, just the two of them, and I watch too many air disaster shows on the National Geographic Channel to love that idea too much.
(Although I have to confess, Air Emergency is my secret shameful TV addiction. Well, not so secret anymore, I guess.)
So this weekend, it is their job to have a good time, and my job to worry. Apparently I'm starting early.
It's not going to be as bad as it sounds for me, since I am also going to be gone as well, shooting a wedding out of town. Still, five days is a long time. Also, they'll be flying, just the two of them, and I watch too many air disaster shows on the National Geographic Channel to love that idea too much.
(Although I have to confess, Air Emergency is my secret shameful TV addiction. Well, not so secret anymore, I guess.)
So this weekend, it is their job to have a good time, and my job to worry. Apparently I'm starting early.
July 24, 2006
"I just want to go with you."
I was shooting an event over the weekend when I first noticed this little girl, maybe two years old. I can try to describe why she caught my eye and never let go of my attention, but I'm not sure if it would make sense. She was pretty, with impossibly big eyes and a serious expression. She didn't play with the other kids, but she played, lost in an internal world as she danced and ran happily but alone, in a room full of people. When she wasn't in that realm of her own making, she watched, carefully studying the actions of everyone around her. There was nothing wrong with her, nothing broken or amiss. And yet, she was different from any kid in that room, but not from any kid I'd ever seen, which was why I couldn't stop watching her.
She reminded me of Schuyler. Not Schuyler now so much, but Schuyler a few years ago, before we knew her monster's name or nature, but after she had already embarked on her life's path, a path that she would travel alone.
I pointed her out to the photographer with whom I was working. I didn't know exactly how to describe what I was seeing, but when I opened my mouth, I suddenly knew exactly how to say it. "Whatever planet Schuyler comes from, that little girl comes from there, too."
Which, as it turns out, is exactly how her own father described her. A visitor from another world.
I feel a little self-indulgent in telling you all this, but I suspect my own behavior isn't all that different from that of any other parent of a child who is different. I'm not just talking about kids with broken bodies or broken brains or broken spirits. I'm talking about any parent who knows, for whatever reason, that their child is going to have a life full of obstacles that other kids don't have.
I'm talking about any parent who gets overwhelmed in a way that ninety-nine out of a hundred other parents around them won't ever get.
So yeah, I feel weird talking about what happened next, but maybe a hundred of you will read this and one of you will say "God, me too."
The thing that happened next was that as I watched this little girl run and play and walk through this world without ever leaving her own, and watched how some people reached out protectively as she passed, I realized that in watching someone else's ethereal kid, I was seeing how the rest of the world must see Schuyler.
I'd never seen that before. Not really. And it was more than I could deal with.
I'm not going to get all maudlin or dramatic about this. I simply took the first opportunity I had to step out of the venue and go outside past the reach of the lights, and then I lost my shit for a few minutes. That's all. Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.
That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.
And then you wait for it to slowly fill again, I guess.
When I returned to the event, I bumped into the little girl and her father outside, and I took her picture. I told her, and her father, how much she reminded me of my own little girl, and while I don't think the dad noticed how emotional I was, she did. She opened up to me and followed me around for a while.
Later, she danced with her father, who looked at her with the same intensity that I find myself watching Schuyler, the one that shows that we have a visitor's pass to their world. As father and daughter moved past me, she caught sight of me over his shoulder. As I raised my camera and took my favorite photo of the evening, she smiled her mysterious little smile and reached out as if to touch me.
I don't know if this entry makes any sense. I'm not certain this world makes any sense, either.
She reminded me of Schuyler. Not Schuyler now so much, but Schuyler a few years ago, before we knew her monster's name or nature, but after she had already embarked on her life's path, a path that she would travel alone.
I pointed her out to the photographer with whom I was working. I didn't know exactly how to describe what I was seeing, but when I opened my mouth, I suddenly knew exactly how to say it. "Whatever planet Schuyler comes from, that little girl comes from there, too."
Which, as it turns out, is exactly how her own father described her. A visitor from another world.
I feel a little self-indulgent in telling you all this, but I suspect my own behavior isn't all that different from that of any other parent of a child who is different. I'm not just talking about kids with broken bodies or broken brains or broken spirits. I'm talking about any parent who knows, for whatever reason, that their child is going to have a life full of obstacles that other kids don't have.
I'm talking about any parent who gets overwhelmed in a way that ninety-nine out of a hundred other parents around them won't ever get.
So yeah, I feel weird talking about what happened next, but maybe a hundred of you will read this and one of you will say "God, me too."
The thing that happened next was that as I watched this little girl run and play and walk through this world without ever leaving her own, and watched how some people reached out protectively as she passed, I realized that in watching someone else's ethereal kid, I was seeing how the rest of the world must see Schuyler.
I'd never seen that before. Not really. And it was more than I could deal with.
I'm not going to get all maudlin or dramatic about this. I simply took the first opportunity I had to step out of the venue and go outside past the reach of the lights, and then I lost my shit for a few minutes. That's all. Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.
That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.
And then you wait for it to slowly fill again, I guess.
When I returned to the event, I bumped into the little girl and her father outside, and I took her picture. I told her, and her father, how much she reminded me of my own little girl, and while I don't think the dad noticed how emotional I was, she did. She opened up to me and followed me around for a while.
Later, she danced with her father, who looked at her with the same intensity that I find myself watching Schuyler, the one that shows that we have a visitor's pass to their world. As father and daughter moved past me, she caught sight of me over his shoulder. As I raised my camera and took my favorite photo of the evening, she smiled her mysterious little smile and reached out as if to touch me.
I don't know if this entry makes any sense. I'm not certain this world makes any sense, either.
July 21, 2006
FOMB
That's what I told a friend of mine yesterday that I must have been suffering from. Fat Old Man Belly.
Feeling much better today. Must have been that 24-hour appendicitis.
Thanks to everyone who send me their learned opinions and their fucked up little activities. You people are freaks.
Feeling much better today. Must have been that 24-hour appendicitis.
Thanks to everyone who send me their learned opinions and their fucked up little activities. You people are freaks.
July 20, 2006
So...
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.
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 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.
June 6, 2006
Beedies update
I had my monthly visit to Dr. Hottie today, and it went fairly well. I was all prepared to find out that I am even fatter and lazier than I was last month, but I was surprised to learn that I've actually lost three pounds in the past few weeks. I'm still on the wrong side of where I was the day I was diagnosed and was told that I should lose twenty pounds, but considering that I thought the news would be worse, I was happy to hear that I am at the very least not turning into a chud monster at quite the rate I thought I was.
It's hard, losing weight when you've led a free and easy, chocolate-coated, deep-fried existence. I'm proud of some of the changes I've made. I don't find it all that hard to stay away from sugar stuff (although yeah, I miss me some cookies), and what cravings I do have are easily enough satisfied with some items made with Splenda, things like Sugar Free Jell-o Pudding (but not the Jell-o itself, oddly enough) and some fakey-fake chocolate ice cream by Breyers. There are a number of diet soft drinks I can have, but honestly, I mainly end up drinking lots of Propel.
The thing that's hard to fight is carbs. And honestly, I snack more than I should, and I exercise less than I should, and so I lose less weight than I should. This last twenty (okay, shut up, twenty-five now) pounds is going to be a challenge. It's funny, too, because I have lost about, and this is not a lie, seventy pounds since college. Man, I was a treat for the eyes back then.
To help with these last remnants of Jabba the Huttliness, my doctor prescribed Phentermine, a diet pill that I thought was all controversial until I actually started reading about it. Turns out Phentermine was the "phen" part of Fen-phen, and it was the other part, the Fenfluramine, that was messing people up. Phentermine doesn't appear to be a big deal, although it is very tightly controlled and is not intended for the 125-pound purging sorority girl so much as people with a medical reason to lose weight, like the morbidly obese and, well, me.
As for side effects, Phentermine can affect your blood pressure, but my BP is completely, weirdly normal. According to Dr. Hottie and the stuff I'm reading, it also can make you jumpy, and after one short afternoon on it, all I can say is "yep".
So between the Phentermine and a newly invigorated exercise program (I am Bikezilla these days), be ready for the hot new Rob.
Slim. Sexy. And jumpy as fuck.
June 5, 2006
Update to Left Behind
Okay, maybe not so much.
When it comes to contemporary politics and particularly election shenanigans, it's impossible to know who to believe or where the truth lies.
Still, it's a relief to read that perhaps our election system isn't completely rotten.
I'm slightly more comfortable with the idea of a foolish electorate.
When it comes to contemporary politics and particularly election shenanigans, it's impossible to know who to believe or where the truth lies.
Still, it's a relief to read that perhaps our election system isn't completely rotten.
I'm slightly more comfortable with the idea of a foolish electorate.
June 4, 2006
Left Behind
I haven't written about politics in a long time, which some of you might think is a good thing. Furthermore, I doubt I'm going to start again any time soon. My politics haven't necessarily changed, I'm still the big liberal I always was. In fact, that's part of the problem. It's been a long time since I felt like the Democratic Party showed much interest in upholding any of its traditional progressive values, and I'm not sure I see things getting better any time soon. Lewis Black described the Republicans as the party of Bad Ideas, and the Democrats as the party of No Ideas.
And while I agreed that the 2000 election was ultimately decided by the Supreme Court rather than the will of the people, it was also clear to me and a lot of progressives that if not for the failings of the Democratic Party and Al Gore to capitalize on the peace and prosperity of the Clinton Administration, the election would have not only gone the other way, but wouldn't have even been all that close.
As for 2004? Another weak candidate who couldn't beat the worst president since the discovery of electricity, it seemed. It didn't make much sense, given how poorly George W. Bush had performed and how badly the war was going, but whatever. No one ever failed in business or politics by banking on the ridiculousness of the American public.
Well, turns out, the problem with the American voting public might not have been our decision to re-elect an apocalyptically bad president after all.
The problem might just have been our trust in the system and the assumption that our votes actually mattered.
Is this how the fall of Rome began? And when it happened, did the Romans actually give a damn?
And while I agreed that the 2000 election was ultimately decided by the Supreme Court rather than the will of the people, it was also clear to me and a lot of progressives that if not for the failings of the Democratic Party and Al Gore to capitalize on the peace and prosperity of the Clinton Administration, the election would have not only gone the other way, but wouldn't have even been all that close.
As for 2004? Another weak candidate who couldn't beat the worst president since the discovery of electricity, it seemed. It didn't make much sense, given how poorly George W. Bush had performed and how badly the war was going, but whatever. No one ever failed in business or politics by banking on the ridiculousness of the American public.
Well, turns out, the problem with the American voting public might not have been our decision to re-elect an apocalyptically bad president after all.
The problem might just have been our trust in the system and the assumption that our votes actually mattered.
Is this how the fall of Rome began? And when it happened, did the Romans actually give a damn?
June 3, 2006
A Different Kind of Normal, Revisited
A couple of months ago, I wrote an entry about a magazine article concerning a special needs family and how they deal with the different challenges that come up for broken kids and their own particular monsters. Well, I'm happy to report that the first part of the series A Different Kind of Normal is now available to read online at Wondertime magazine's site. I hope you'll go read it, because it really is a thought-provoking article that might give you a slightly different perspective on some of the things that kids like Jimmy and Schuyler face.
I hear from a lot of parents and readers who talk about how we've become an inspiration for them in some way, and I am always touched by that, even when I don't feel like I deserve it. Well, the parents in the article, Michelle and Jim Foard, have become heroes to me. They are fierce advocates for their son, and they're not ones to sugarcoat the challenges he faces. When something's hard, they say it's hard.
You know how I feel about the "glass half full", "he's my special little guy", "handicapable!" Holland crowd. If that sort of sunny-side approach is what they need, then I certainly think they need to embrace what works for them. But I don't have much use for it, and I certainly don't think broken kids need it, either.
Michelle and Jim understand something that I think most people don't get, and that includes a lot of parents, even some with special needs kids. They understand that their son has limitations that have to be respected, but they also seem to understand that within those limits, their greatest gift to their son is the expectation that he will one day be able to fit into the world.
The title of the article comes from something Michelle said, in the last paragraph:
When I first read the article, I wrote to the author, Charlotte Meryman, to tell her how much I enjoyed it. We exchanged a few emails and had a pleasant conversation, and while I don't remember telling her about my site, I either must have said something or she found it on her own and shared it, because last week, I received an email from none other than Michelle Foard herself.
She expressed some of the same things I've felt, about how "usettling" it is to have all this personal information out there in the world about her family and how hard it is to receive unpleasant emails from strangers. Until now, she was unfamiliar with the whole blogging world, so all of the faceless, anonymous bile of the internet is new for her.
I hope she won't mind if I quote her email, but she said something that made me proud, both of what I'd written and of what you people said in response, and I thought you ought to read it:
So after reading a barrage of angry emails and stupid remarks, it was nice to see that someone out there really got the gist of what the article was about and could relate to our situation. So thank you and your other "bloggers?" for reaffirming that going public and being completely honest wasn't a crazy stupid mistake.
So there you go. Good stuff happens here sometimes.
I hear from a lot of parents and readers who talk about how we've become an inspiration for them in some way, and I am always touched by that, even when I don't feel like I deserve it. Well, the parents in the article, Michelle and Jim Foard, have become heroes to me. They are fierce advocates for their son, and they're not ones to sugarcoat the challenges he faces. When something's hard, they say it's hard.
You know how I feel about the "glass half full", "he's my special little guy", "handicapable!" Holland crowd. If that sort of sunny-side approach is what they need, then I certainly think they need to embrace what works for them. But I don't have much use for it, and I certainly don't think broken kids need it, either.
Michelle and Jim understand something that I think most people don't get, and that includes a lot of parents, even some with special needs kids. They understand that their son has limitations that have to be respected, but they also seem to understand that within those limits, their greatest gift to their son is the expectation that he will one day be able to fit into the world.
The title of the article comes from something Michelle said, in the last paragraph:
Michelle and Jim have risen to the profound occasion of raising their son. "We want to give Jimmy every possible chance to excel," says Jim. "We love him. He's perfect. But he's going to have some very serious issues we're going to have to deal with for the rest of his life." It's a future they've learned to make peace with. "It's life now," explains Jim. "It's part of everything we do." Michelle searches for another way to explain what it's like to be Jimmy's parents. Ultimately, you learn to embrace "a different kind of perfect," she says, and "a different kind of normal."
When I first read the article, I wrote to the author, Charlotte Meryman, to tell her how much I enjoyed it. We exchanged a few emails and had a pleasant conversation, and while I don't remember telling her about my site, I either must have said something or she found it on her own and shared it, because last week, I received an email from none other than Michelle Foard herself.
She expressed some of the same things I've felt, about how "usettling" it is to have all this personal information out there in the world about her family and how hard it is to receive unpleasant emails from strangers. Until now, she was unfamiliar with the whole blogging world, so all of the faceless, anonymous bile of the internet is new for her.
I hope she won't mind if I quote her email, but she said something that made me proud, both of what I'd written and of what you people said in response, and I thought you ought to read it:
So after reading a barrage of angry emails and stupid remarks, it was nice to see that someone out there really got the gist of what the article was about and could relate to our situation. So thank you and your other "bloggers?" for reaffirming that going public and being completely honest wasn't a crazy stupid mistake.
So there you go. Good stuff happens here sometimes.
May 31, 2006
Well, that was a fun ride.
You can say whatever you like about me (and I'm sure you already feel free to do so), but one thing is undeniable.
When I have a blowout, I do not screw around.
When I have a blowout, I do not screw around.
May 30, 2006
Phone conversation with Schuyler, just now.
Me: Did you have a good time today?
Her: Yeah!
Me: Were you a good girl?
Her: Yeah.
Me: Did you play?
Her: Yeah.
Me: Did you go swimming?
Her: Yeah.
Me: Did you eat bugs?
Her: (with an exasperated sigh) Noooooo...
Her: Yeah!
Me: Were you a good girl?
Her: Yeah.
Me: Did you play?
Her: Yeah.
Me: Did you go swimming?
Her: Yeah.
Me: Did you eat bugs?
Her: (with an exasperated sigh) Noooooo...
Island
Schuyler starts her summer camp program today.
I hate turning her over to other people. A while back, I wrote about my secret dream, which was for us all to move to an island somewhere and be together without all the fears and pitfalls of a cruel society. It wasn't a healthy dream, I admitted as such at the time. On days like today, however, when Schuyler walks into another new situation armed only with her tough girl disposition and her Big Box of Words, my stomach ties in tight knots with all the old fears. That island sounded pretty good to me this morning.
A friend of mine recently found out that the teachers at her five year-old daughter's private school were singling out her kid for special treatment. It's not my kid, so I won't get into the specifics, but let's just say that I was a little surprised to learn that these teachers were adopting the Lord of the Flies educational model. A shame circle? WTF?
The details aren't important. What is relevant about this story is that the teachers apparently counted on the kids to keep the situation a secret, and for a long time, they succeeded through the use of that time-honored teaching tool, embarrassment. My friend didn't find out from her daughter, who was humiliated by the experience and was keeping it to herself, but from other parents where were hearing bits and pieces of the story from their kids.
The reason this story upset me so much, aside from the fact that in general, I'm not in favor of little kids being humiliated, is that this happened to a little girl who can speak. This happened to a little girl who loves to talk. I think you can see where this is going.
We're in a delicate place with Schuyler. A year ago, she was just beginning to use her device and was still spending all her time in a heavily (if incompetently) supervised special needs program. In a year or two from now, she will hopefully be proficient enough with her device that she will be able to accurately communicate to us if things go wrong and no one's around to stop it.
But right now, it's hard. Schuyler's spending more and more time in mainstream programs, and this summer, she'll be spending the better part of every day surrounded by neuro-typical kids. Neuro-typical North Dallas kids, many of whom will presumedly grow into North Dallas teenagers like the ones who recently had drug-infused muffins delivered to a local rival school's teachers and made a bunch of them sick.
She's still learning how to use her device, and communicating detailed incidents is still very difficult for her. We depend on her teachers and her after-school program staff to tell us when something happens, but we can all remember how often grown-ups got it wrong, and how important it was for someone to take us seriously when we needed to tell our side of the story.
Schuyler needs to be able to tell her side.
Julie came home from dropping Schuyler off this morning, and she was in tears. Nothing bad happened; Schuyler was nervous and hesitant at first, but then she saw some kids she recognized and was off in a flash. This is summer camp; she'll be outside almost the whole time, playing and swimming and getting dirty and eating bugs and generally being a kid during the summertime. Today wasn't a bad start at all.
But Julie was scared, like I'm scared. She'd like the island, too, but she sees better than I do that Schuyler would hate the island. Schuyer would swim to the next island when no one was looking and go play with the headhunter kids.
As much as I turn into Barbarian Dad when the world pushes Schuyler around, Julie is just as sensitive. But more than that, she's dedicated to the idea, as I am, that Schuyler's world shouldn't be so fucked up. The monster shouldn't be calling as many of the shots as it still is.
"I just want her to have fun like any other kid," Julie said through her tears. "I want her to be able to go swim and play and have fun like I always did when I was a little girl. I hate her stupid device sometimes. I don't want her to be different."
When things are going badly for Schuyler, it's hard to be her parent. But the thing is, sometimes it's hard when nothing's wrong, too.
I hate turning her over to other people. A while back, I wrote about my secret dream, which was for us all to move to an island somewhere and be together without all the fears and pitfalls of a cruel society. It wasn't a healthy dream, I admitted as such at the time. On days like today, however, when Schuyler walks into another new situation armed only with her tough girl disposition and her Big Box of Words, my stomach ties in tight knots with all the old fears. That island sounded pretty good to me this morning.
A friend of mine recently found out that the teachers at her five year-old daughter's private school were singling out her kid for special treatment. It's not my kid, so I won't get into the specifics, but let's just say that I was a little surprised to learn that these teachers were adopting the Lord of the Flies educational model. A shame circle? WTF?
The details aren't important. What is relevant about this story is that the teachers apparently counted on the kids to keep the situation a secret, and for a long time, they succeeded through the use of that time-honored teaching tool, embarrassment. My friend didn't find out from her daughter, who was humiliated by the experience and was keeping it to herself, but from other parents where were hearing bits and pieces of the story from their kids.
The reason this story upset me so much, aside from the fact that in general, I'm not in favor of little kids being humiliated, is that this happened to a little girl who can speak. This happened to a little girl who loves to talk. I think you can see where this is going.
We're in a delicate place with Schuyler. A year ago, she was just beginning to use her device and was still spending all her time in a heavily (if incompetently) supervised special needs program. In a year or two from now, she will hopefully be proficient enough with her device that she will be able to accurately communicate to us if things go wrong and no one's around to stop it.
But right now, it's hard. Schuyler's spending more and more time in mainstream programs, and this summer, she'll be spending the better part of every day surrounded by neuro-typical kids. Neuro-typical North Dallas kids, many of whom will presumedly grow into North Dallas teenagers like the ones who recently had drug-infused muffins delivered to a local rival school's teachers and made a bunch of them sick.
She's still learning how to use her device, and communicating detailed incidents is still very difficult for her. We depend on her teachers and her after-school program staff to tell us when something happens, but we can all remember how often grown-ups got it wrong, and how important it was for someone to take us seriously when we needed to tell our side of the story.
Schuyler needs to be able to tell her side.
Julie came home from dropping Schuyler off this morning, and she was in tears. Nothing bad happened; Schuyler was nervous and hesitant at first, but then she saw some kids she recognized and was off in a flash. This is summer camp; she'll be outside almost the whole time, playing and swimming and getting dirty and eating bugs and generally being a kid during the summertime. Today wasn't a bad start at all.
But Julie was scared, like I'm scared. She'd like the island, too, but she sees better than I do that Schuyler would hate the island. Schuyer would swim to the next island when no one was looking and go play with the headhunter kids.
As much as I turn into Barbarian Dad when the world pushes Schuyler around, Julie is just as sensitive. But more than that, she's dedicated to the idea, as I am, that Schuyler's world shouldn't be so fucked up. The monster shouldn't be calling as many of the shots as it still is.
"I just want her to have fun like any other kid," Julie said through her tears. "I want her to be able to go swim and play and have fun like I always did when I was a little girl. I hate her stupid device sometimes. I don't want her to be different."
When things are going badly for Schuyler, it's hard to be her parent. But the thing is, sometimes it's hard when nothing's wrong, too.
May 29, 2006
Memorial Day 2006
For 14 hours yesterday I was at work -- teaching Christ to lift his cross by numbers, and how to adjust his crown; and not to imagine he thirst till after the last halt; I attended his Supper to see that there were no complaints; and inspected his feet to see that they should be worthy of the nails. I see to it that he is dumb and stands to attention before his accusers. With a piece of silver I buy him every day, and with maps I make him familiar with the topography of Golgotha.
Wilfred Owen, 1918 letter to Osbert Stilwell
-----
Allow the President to invade a neighboring nation, whenever he shall deem it necessary to repel an invasion, and you allow him to do so, whenever he may choose to say he deems it necessary for such a purpose -- and you allow him to make war at pleasure. If today, he should choose to say he thinks it necessary to invade Canada, to prevent the British from invading us, how could you stop him? You may say to him, "I see no probability of the British invading us' but he will say to you, 'Be silent; I see it, if you don't."
Abraham Lincoln
-----
What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy?
Mahatma Gandhi (1869 - 1948), "Non-Violence in Peace and War"
-----
O Lord our God, help us tear their soldiers to bloody shreds with our shells; help us to cover their smiling fields with the pale forms of their patriot dead; help us to drown the thunder of the guns with the shrieks of their wounded, writhing in pain; help us to lay waste their humble homes with a hurricane of fire; help us to wring the hearts of their unoffending widows with unavailing grief; help us to turn them out roofless with their little children to wander unfriended the wastes of their desolated land in rags and hunger and thirst, sports of the sun flames of summer and the icy winds of winter, broken in spirit, worn with travail, imploring Thee for the refuge of the grave and denied it.
Mark Twain, "The War Prayer"
-----
Only the dead have seen the end of war
Plato
Wilfred Owen, 1918 letter to Osbert Stilwell
-----
Allow the President to invade a neighboring nation, whenever he shall deem it necessary to repel an invasion, and you allow him to do so, whenever he may choose to say he deems it necessary for such a purpose -- and you allow him to make war at pleasure. If today, he should choose to say he thinks it necessary to invade Canada, to prevent the British from invading us, how could you stop him? You may say to him, "I see no probability of the British invading us' but he will say to you, 'Be silent; I see it, if you don't."
Abraham Lincoln
-----
What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy?
Mahatma Gandhi (1869 - 1948), "Non-Violence in Peace and War"
-----
O Lord our God, help us tear their soldiers to bloody shreds with our shells; help us to cover their smiling fields with the pale forms of their patriot dead; help us to drown the thunder of the guns with the shrieks of their wounded, writhing in pain; help us to lay waste their humble homes with a hurricane of fire; help us to wring the hearts of their unoffending widows with unavailing grief; help us to turn them out roofless with their little children to wander unfriended the wastes of their desolated land in rags and hunger and thirst, sports of the sun flames of summer and the icy winds of winter, broken in spirit, worn with travail, imploring Thee for the refuge of the grave and denied it.
Mark Twain, "The War Prayer"
-----
Only the dead have seen the end of war
Plato
Subscribe to:
Posts (Atom)