I just walked in from putting Schuyler on the bus. This is almost always the worst part of the day.
About half an hour ago, I woke from a recurring dream, a variation on one that I've had ever since Schuyler's diagnosis in the summer of 2003. It's the dream where she talks to me. I hate the dream, even though I also love it a little. I hate how I feel when I wake up and Schuyler's reality hits me all over again, dissipating the dream like smoke.
This time it was a little different. I was holding a baby girl -- our baby, the second child we were never able to have -- and I was wondering where Schuyler was and how she was doing, in that way that I usually think about her during the day, from the moment I put her on the bus and give her over to the world.
Just then, in my dream, she came up behind me and put her hand on my shoulder, and she said the same thing she always does. "It's going to be okay," she said. And then she asked where her beanbag chair was.
Julie woke me in the middle of the dream so I could put Schuyler on the bus after she left for work. I found Schuyler on the couch, getting her morning Zaboomafoo fix. I asked her how she was doing. She smiled and silently gave me a thumbs up.
It's going to be okay. I still hurt for her, though.
November 6, 2006
October 31, 2006
Halloween Confession
Yesterday morning, after we'd gotten ready for school but before the bus arrived, Schuyler and I were sitting on the couch, watching television. She was eating her breakfast of apple slices and generally absorbed in a high energy show about animals, hosted by a lemur puppet whose name I am entirely too lazy to look up how to spell. Parents, you know the one.
I looked over at her and asked, "Are you excited about Halloween?"
"Yeah," she said, not looking away from her show.
"Are you looking forward to being a witch?"
"Uh huh," she answered, clearly a little irritated that I was still bothering her while she was trying to watch baby animals on tv.
"Tell me, Schuyler, are you a good witch or a bad witch?"
She sighed and pulled her device over to her side. She quickly punched a few buttons and then hit the speak button, turning back to her television show without so much as a glance as it spoke for her in its calm computer voice.
"BAD."
Well. There you go.
I looked over at her and asked, "Are you excited about Halloween?"
"Yeah," she said, not looking away from her show.
"Are you looking forward to being a witch?"
"Uh huh," she answered, clearly a little irritated that I was still bothering her while she was trying to watch baby animals on tv.
"Tell me, Schuyler, are you a good witch or a bad witch?"
She sighed and pulled her device over to her side. She quickly punched a few buttons and then hit the speak button, turning back to her television show without so much as a glance as it spoke for her in its calm computer voice.
"BAD."
Well. There you go.
Come see Mister Fancy Pants
NYC
Originally uploaded by Citizen Rob.
Those of you living in the New York City area might be wondering to yourselves, "Say, I wonder what I'm going to be doing on the evening of Monday, December 11? Surely there's some way I can spend, say, twenty bucks or so and be both informed and amused!"
From Blogger to Author: How Bloggers Got Book Deals, and What Happened Next
Monday, December 11, 7-9 pm
Small Press Center
20 West 44th Street
New York, NY 10036
212-764-7021
I had no idea that Jessica "Washingtonienne" Cutler is going to be one of the speakers. I'm going to have to try extra hard to be interesting now. "Yeah yeah yeah, crazy sexual exploits in the halls of power are interesting, I suppose, but what we REALLY want to hear about is the Big Box of Words!"
Don't worry. I'll make stuff up if I have to. For twenty bucks, you deserve some zazz.
On second thought...
First of all, I want to thank everyone who has been concerned about my health. I really appreciate it.
I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.
For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.
I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.
For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.
October 30, 2006
Wiccan nugget
First off, no, I haven't had my little pebble baby yet. And everything you've heard about how painful kidney stones can be? Um, it's all true. Fuck a duck, this hurts.
But I really don't want to go on about that, mostly because "it hurts" is about the most illuminating thing I have to share. It may be an understatement on the same scale as "Hitler was mean", but really, it hurts. Not much more to say about it.
We just finished the annual ritual of deciding what Schuyler is going to be for Halloween, and as you can see, she settled on being a witch again. Unlike last year's punky, sassy and yeah, kind of slutty Spider Witch, however, this year she has opted for the more traditional, Wizard of Oz-ish Old Skool Witch.
I suppose her costume might be even more borderline offensive than last year, both to Religious Conservatives (ie. kooks) who don't dig the supernatural ("Thou shalt not suffer a witch to live"; thanks for nothing, silly Bible) and would prefer Barbie or a little miniature Ann Coulter to come to their door, and also to Wiccans (ie. you know, actual witches) who probably don't love the idea of the traditional negative cackling witch with the broom, eating up Hansel ünd Gretel, etc.
But the costume was Schuyler's choice, and it didn't involve a character from a television show or a corporate product endorsement. Besides, we're not going to turn her green or give her a wart. She's actually a very cute little witch, albeit perhaps a slightly wicked one. She looks more Amish than evil.
The route to this costume was, like last year, a circuitous one. For months she's been saying that she wanted to be a mermaid for Halloween, but when we started looking for costumes, the ones we found looked ridiculously crappy or Jon Benet-whoreish. Leave it to the Disney store to have the only halfway decent-looking mermaid costume, and they wanted... (wait for it, wait for it...) EIGHTY ACTUAL AMERICAN REAL DOLLARS for it, for no other apparent reason than they just released The Little Mermaid on DVD and can jack up the price as a result of all the little girls with Ariel on the brain. I hate you, Disney. I hate you more than ever before, and I hated you pretty hardcore before this.
We then found an awesome pirate costume and were both set to go as matching pirates. (Julie is insisting on going as a soldier, for reasons that escape me but have something to do with already having the costume, and I think I'm going to take a "don't ask, don't tell" approach to that particular acquisition of hers.) Something happened inside the mysterious head of Schuyler, however, and suddenly she didn't want to be a pirate anymore. With only minutes to spare before exhausting our last molecules of patience, she suddenly saw this costume and decided that she wanted to be a witch, of the "Wicked Witch of the Pick a Direction" variety, and that was that. Being Schuyler, she opted to bypass the traditional twiggy broom for the stylish purple model and the purple striped tights, and of course the addition of her traditional pink Chuck Taylors finished the look.
Finished, of course, except for the hair. We did that tonight, with a color that she picked out months ago and which was just patiently waiting in the bathroom cupboard for the right moment. Tonight was the night of the Great Purpling, both for Schuyler's hair and, for a while, her skin, my fingernails and most of the tile in our bathroom. Everything's back to its preferred color now except for my fingernails, which are now zombie-purple. (Say, there's an idea for a costume. It would fit well with the effects of the Vicodin I'm taking.)
You'll be especially amused to know that in order to appease Schuyler even further, I finally gave in to the request that she has made every time we color her hair. I tried a little on myself, purpling up a big strand in the front. Sadly, my hair is so dark that it is almost invisible. You can be the judge of whether or not that's really bad news; I do have a job, after all, although it is in academia where that sort of thing is probably expected from time to time.
Halloween is a strange day for Schuyler, and one that she and I both dig more than I can explain. Neither of us can really eat very much of the candy, after all. Her dysphagia makes hard candy dangerous for her to eat, and of course now I've got the Beedies pissing on all my Halloween fun.
But we throw ourselves into Halloween just the same. I suspect that it has to do with the fact that for that one day, she's not a kid with a monster, strange and alone with her Martian language and her computerized voice. On Halloween, she's supposed to be a weird kid, but not THE weird kid just this once. It's a day when she can lose herself in being a witch and not have to be whatever it is that the world sees her as the rest of the time. Sweet and punky yet weird and broken, whatever. She gets to toss that aside for the day and be a witch. "Give me some candy or I'll turn you into a fly."
Halloween is her day to just be a kid.
As for me, now that we've strayed from the pirate idea, I'm at a loss for a matching costume. I'd love to go as her flying monkey, but I don't think I'm ambitious enough to make that happen.
But I really don't want to go on about that, mostly because "it hurts" is about the most illuminating thing I have to share. It may be an understatement on the same scale as "Hitler was mean", but really, it hurts. Not much more to say about it.
We just finished the annual ritual of deciding what Schuyler is going to be for Halloween, and as you can see, she settled on being a witch again. Unlike last year's punky, sassy and yeah, kind of slutty Spider Witch, however, this year she has opted for the more traditional, Wizard of Oz-ish Old Skool Witch.
I suppose her costume might be even more borderline offensive than last year, both to Religious Conservatives (ie. kooks) who don't dig the supernatural ("Thou shalt not suffer a witch to live"; thanks for nothing, silly Bible) and would prefer Barbie or a little miniature Ann Coulter to come to their door, and also to Wiccans (ie. you know, actual witches) who probably don't love the idea of the traditional negative cackling witch with the broom, eating up Hansel ünd Gretel, etc.
But the costume was Schuyler's choice, and it didn't involve a character from a television show or a corporate product endorsement. Besides, we're not going to turn her green or give her a wart. She's actually a very cute little witch, albeit perhaps a slightly wicked one. She looks more Amish than evil.
The route to this costume was, like last year, a circuitous one. For months she's been saying that she wanted to be a mermaid for Halloween, but when we started looking for costumes, the ones we found looked ridiculously crappy or Jon Benet-whoreish. Leave it to the Disney store to have the only halfway decent-looking mermaid costume, and they wanted... (wait for it, wait for it...) EIGHTY ACTUAL AMERICAN REAL DOLLARS for it, for no other apparent reason than they just released The Little Mermaid on DVD and can jack up the price as a result of all the little girls with Ariel on the brain. I hate you, Disney. I hate you more than ever before, and I hated you pretty hardcore before this.
We then found an awesome pirate costume and were both set to go as matching pirates. (Julie is insisting on going as a soldier, for reasons that escape me but have something to do with already having the costume, and I think I'm going to take a "don't ask, don't tell" approach to that particular acquisition of hers.) Something happened inside the mysterious head of Schuyler, however, and suddenly she didn't want to be a pirate anymore. With only minutes to spare before exhausting our last molecules of patience, she suddenly saw this costume and decided that she wanted to be a witch, of the "Wicked Witch of the Pick a Direction" variety, and that was that. Being Schuyler, she opted to bypass the traditional twiggy broom for the stylish purple model and the purple striped tights, and of course the addition of her traditional pink Chuck Taylors finished the look.
Finished, of course, except for the hair. We did that tonight, with a color that she picked out months ago and which was just patiently waiting in the bathroom cupboard for the right moment. Tonight was the night of the Great Purpling, both for Schuyler's hair and, for a while, her skin, my fingernails and most of the tile in our bathroom. Everything's back to its preferred color now except for my fingernails, which are now zombie-purple. (Say, there's an idea for a costume. It would fit well with the effects of the Vicodin I'm taking.)
You'll be especially amused to know that in order to appease Schuyler even further, I finally gave in to the request that she has made every time we color her hair. I tried a little on myself, purpling up a big strand in the front. Sadly, my hair is so dark that it is almost invisible. You can be the judge of whether or not that's really bad news; I do have a job, after all, although it is in academia where that sort of thing is probably expected from time to time.
Halloween is a strange day for Schuyler, and one that she and I both dig more than I can explain. Neither of us can really eat very much of the candy, after all. Her dysphagia makes hard candy dangerous for her to eat, and of course now I've got the Beedies pissing on all my Halloween fun.
But we throw ourselves into Halloween just the same. I suspect that it has to do with the fact that for that one day, she's not a kid with a monster, strange and alone with her Martian language and her computerized voice. On Halloween, she's supposed to be a weird kid, but not THE weird kid just this once. It's a day when she can lose herself in being a witch and not have to be whatever it is that the world sees her as the rest of the time. Sweet and punky yet weird and broken, whatever. She gets to toss that aside for the day and be a witch. "Give me some candy or I'll turn you into a fly."
Halloween is her day to just be a kid.
As for me, now that we've strayed from the pirate idea, I'm at a loss for a matching costume. I'd love to go as her flying monkey, but I don't think I'm ambitious enough to make that happen.
October 28, 2006
Audience participation
Come on, everyone, chant it with me.
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
October 26, 2006
Rock star
So last night I got this massive pain in my left kidney, like I had been kicked hard, and just this once, I was smart enough not to ignore it. I had Julie take me to the hospital, and sure enough, it was a kidney stone.
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
October 21, 2006
Stalking for Dummies
Just wanted to take a moment to let everyone know that I will be crawling out of my little writing cave for two public events in the coming month or two.
On November 2, I will be present for the opening of an art exhibit in Austin called Celebrated Skin. The topic of the exhibit is tattoo art, and my contribution will be my right arm, which I presume will be up on the wall. (A photo of my arm, rather; I love art, but I'm not game for an amputation just yet.) Stop by and watch me pretend to know what the hell I'm talking about.
On December 11 (and a day or two after, I imagine), I will be in New York City for a Media Bistro panel. I don't have any details right now, although I don't think it's going to be an "open to the public" thing, but I'll let you know when I have more information. If nothing else, it might be fun to put together some kind of small gathering while I'm in town.
Stalkers, sharpen your knives and make your plans.
On November 2, I will be present for the opening of an art exhibit in Austin called Celebrated Skin. The topic of the exhibit is tattoo art, and my contribution will be my right arm, which I presume will be up on the wall. (A photo of my arm, rather; I love art, but I'm not game for an amputation just yet.) Stop by and watch me pretend to know what the hell I'm talking about.
On December 11 (and a day or two after, I imagine), I will be in New York City for a Media Bistro panel. I don't have any details right now, although I don't think it's going to be an "open to the public" thing, but I'll let you know when I have more information. If nothing else, it might be fun to put together some kind of small gathering while I'm in town.
Stalkers, sharpen your knives and make your plans.
October 16, 2006
Getting schooled, and good
I just finished the chapter describing Schuyler's condition (the beginning paragraphs of which inspired my last entry), and in the process, I learned a few things. Part of that came from research I did, both online and with the help of Dana, who remains one of my best friends even from Connecticut. I also wrote to the two top experts on Schuyler's disorder: Dr. William Dobyns, who saw Schuyler in Chicago back in January 2005, and the Christopher Walsh Laboratory at Harvard. They both wrote me back with a ton of information, much of which appears to be in English but is clearly written for someone smarter than myself.
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.
October 9, 2006
Found Wisdom
Schuyler
Originally uploaded by Citizen Rob.
I ran across this while researching something for my book, and it resonated so strongly with me that I wanted to share it.
I don't always think people understand why Schuyler's situation makes me so sad sometimes. I'm not always sure I understand it myself.
-----
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
-- The Impact of Childhood Disability: The Parent's Struggle, by Ken Moses, Ph.D.
October 6, 2006
Where she lives
Ballerina artist
Originally uploaded by Citizen Rob.
Typically, when I write a blog entry, I start with the topic and go from there. When I'm done writing, I'll go find a photo that will go with it, or I'll take one if I need one. Or perhaps I'll steal one from someone else's page, maybe yours! The point is, usually the photo comes last, as an accompaniment to the writing.
This morning as I was leaving for work, Schuyler was drawing with her big markers, wearing her little ballerina outfit that she inexplicably puts on when she's playing around the apartment. I have no idea what the appeal might be, particularly since she doesn't really dance around much when she wears it. Anyway, she was drawing quietly with her markers, and I thought it was cute so I took a few photos on my way out the door.
It wasn't until later, after I loaded the photos into my computer, that I saw what I had captured, and knew that I wanted to write about it.
Anyone who has ever met Schuyler and spent any time with her knows how sociable she is. She is outgoing and friendly and not one bit shy. It's almost scary sometimes, how warm and happy and turned-up-to-eleven she can be.
But Schuyler lives most of her life inside her head. It's not so pervasive as it was when she was younger. She can make herself more clearly understood now, she has options she didn't have before. But she only makes those connections when it suits her, and much of the time, it doesn't.
Strangely, this is a side of Schuyler that I understand completely. When she disappears inside her own head like she's doing in that photo, I get it. It's not because of her monster, not entirely. I think she retreats there because it's a place where she makes sense. Schuyler is a social creature, but she is also a very internal one, a person who can be totally alone in a crowded room. I watch her withdraw, not out of sadness or anger or stress, but simply because that's where she lives, inside herself. And I get it, because it's where I live, too.
Tomorrow, she and I will spend the day at home together, and I know that like on most days we have, we'll spend part of it just sitting together. She'll draw or play with her dolls, making them speak to each other in her strange moonman language (she never uses her device to make them talk; she tried that early on, making her dinosaurs say "I love you" to each other, but that didn't last) while I write. We'll do that for hours, and we'll never say a word, and it'll be perfect.
I guess I like that shot because I take a lot of photos of Schuyler that show the vibrant part of her personality, but I feel like a real photographer when I take one that shows her where she lives, inside that strange and broken and beautiful head.
October 4, 2006
The end of days are nigh. Maybe. Nighish.
For those of you who might be religious in nature, I have two things to report that may nor may not signal the coming Apocalypse.
Julie is thinking of getting a PC laptop. And I think we're getting cell phones today.
Before you start frog-proofing your rain gutters, there are good reasons for both. The phone was a long time coming, but getting stuck on the interstate behind a traffic accident for three hours with Schuyler in the car and being unable to call anyone to tell them that we were running late sort of sealed the deal.
I wrote about this more over at my book blog, but the other reason for getting a phone is that it looks like Julie is going to help with publicity for my book, at the very least augmenting whatever publicist I might get assigned by St. Martin's Press. SMP publishes and promotes about 700 titles a year; I'll be trying to sell just one book.
Julie's got experience; it's what she does for a living, after all. Also, she's got a vested interest in the success of my book. And I assume her rates are affordable. Aside from the laptop.
So unless Cingular comes to their financial senses before they deliver our phones, it looks like I'll be joining the rest of you in this Twenty-first century, already in progress.
Schuyler has been on what they call "Fall Break", a free week that I never had when I was in school. She had something of a rough weekend, including a three and a half hour drive that turned into almost eight hours thanks to Dallas traffic and Austin road work and a bout with food poisoning. The fewer details shared about that experience, the better.
But through it all, she stayed mostly happy. Even after getting horribly sick, she would simply wash her face, brush her teeth and be back to her normal self. Her resilience never fails to amaze me. I wish I had her ability to spring back from disappointment. In the words of the Eels song, "I'm tired of the old shit. Let the new shit begin."
Julie is thinking of getting a PC laptop. And I think we're getting cell phones today.
Before you start frog-proofing your rain gutters, there are good reasons for both. The phone was a long time coming, but getting stuck on the interstate behind a traffic accident for three hours with Schuyler in the car and being unable to call anyone to tell them that we were running late sort of sealed the deal.
I wrote about this more over at my book blog, but the other reason for getting a phone is that it looks like Julie is going to help with publicity for my book, at the very least augmenting whatever publicist I might get assigned by St. Martin's Press. SMP publishes and promotes about 700 titles a year; I'll be trying to sell just one book.
Julie's got experience; it's what she does for a living, after all. Also, she's got a vested interest in the success of my book. And I assume her rates are affordable. Aside from the laptop.
So unless Cingular comes to their financial senses before they deliver our phones, it looks like I'll be joining the rest of you in this Twenty-first century, already in progress.
Schuyler has been on what they call "Fall Break", a free week that I never had when I was in school. She had something of a rough weekend, including a three and a half hour drive that turned into almost eight hours thanks to Dallas traffic and Austin road work and a bout with food poisoning. The fewer details shared about that experience, the better.
But through it all, she stayed mostly happy. Even after getting horribly sick, she would simply wash her face, brush her teeth and be back to her normal self. Her resilience never fails to amaze me. I wish I had her ability to spring back from disappointment. In the words of the Eels song, "I'm tired of the old shit. Let the new shit begin."
September 26, 2006
Best line: "A monkey posing as a newscaster..."
I've been staying away from politics for a while, mostly out of depression over the failure of the Democratic Party and the mainstream media to hold the Bush Administration accountable for its actions both before and since 9/11. But after watching Bill Clinton's spirited interview with Fox "News" talking head Chris Wallace, I felt something I hadn't felt in a while. I felt proud of a Democrat. Figures it would be one who's been out of office for five very long years.
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
September 25, 2006
Happy birthday, dead guy.
I would be a bad bad Prophet of Dmitri if I didn't take note of the 100th Anniversary of the birth of my favorite composer, Dmitri Shostakovich.
There's not another artistic figure who has had as great an impact on my musical life as Shostakovich, but that's not the whole story. He is also a personal hero of mine, someone who lived in the most oppressive society in human history and managed to not only survive but also to create a body of work that expresses the reality of life in Stalinist Russia with an emotional honesty and clarity that would have been impossible in any other artistic genre.
When Schuyler was a baby, I promised her I'd take her to Russia in the summer of 2006 to celebrate this anniversary with her. Obviously, it ultimately turned out to be undoable. I would feel uncomfortable traveling in Russia with a non-verbal child, and I'd feel uncomfortable traveling anywhere in the world thanks to our non-sentient president. But I'll be listening to Shostakovich's music today, and reflecting on his life.
So there you go. Some artsy fartsy music jabber for you.
There's not another artistic figure who has had as great an impact on my musical life as Shostakovich, but that's not the whole story. He is also a personal hero of mine, someone who lived in the most oppressive society in human history and managed to not only survive but also to create a body of work that expresses the reality of life in Stalinist Russia with an emotional honesty and clarity that would have been impossible in any other artistic genre.
When Schuyler was a baby, I promised her I'd take her to Russia in the summer of 2006 to celebrate this anniversary with her. Obviously, it ultimately turned out to be undoable. I would feel uncomfortable traveling in Russia with a non-verbal child, and I'd feel uncomfortable traveling anywhere in the world thanks to our non-sentient president. But I'll be listening to Shostakovich's music today, and reflecting on his life.
So there you go. Some artsy fartsy music jabber for you.
I didn't see THAT coming.
Thanks to the very nice people at Publishers Weekly, I now have several copies of the September 11, 2006 edition, for free even. I called them a few days ago to confirm that I was actually in it before buying a few copies from their archive department, and she said, "Oh, give me your address and I'll just send you a couple of copies." She ended up sending five.
This was super cool since I was pretty sure the notice was there, but I hadn't actually seen it yet. It's always nice to be able to hold something like this in hand and be able to actually see the other articles so I can feel all legitimate and flip the pages until I get to the Deals section and see HOLY CRAP, THAT'S MY PHOTO.
Well. That'll wake you up in the morning.
This was super cool since I was pretty sure the notice was there, but I hadn't actually seen it yet. It's always nice to be able to hold something like this in hand and be able to actually see the other articles so I can feel all legitimate and flip the pages until I get to the Deals section and see HOLY CRAP, THAT'S MY PHOTO.
Well. That'll wake you up in the morning.
September 20, 2006
Boring McWriterson
I know it's been a week since I've updated, and honestly, this isn't going to be much of an entry, not compared to the one I'd like to write. The hour is late, and I'm working on the book pretty much most of the time now anyway, including like ten minutes ago and about five minutes from now. But there are two things I wanted to tell you.
1) A comment was left on my last entry letting me know that there was a blurb about me (apparently generated by the Publishers Weekly article) in the Sunday Free Press in Winnipeg, a city that, for those of you who are a product of the American public schools like me, is in Canada. How cool is that? I'm NEWS, baby. Canadian news, no less.
2) In order to keep from cluttering up this fine fine blog with news and jabber about the book, I've created a book site over at SchuylersMonster.com. I keep reading how authors are expected to take up more and more of the promotional duties for their work, and I'm getting an early jump on it. I've been looking at different author sites, and I think this is pretty well in line with what's out there.
Just so you know, it's not all sassy and chaotic like this blog. I do not believe I shall be dropping the F-bomb over there with such Lebowskiesque abandon, for example. It's a professional endeavor, after all, with the single purpose of promoting the book. St. Martin's Press is taking a risk on a new writer like me, and I'm certainly going to do everything I can to make sure their investment pays off.
Am I a sell-out? Well, I don't know. It's my book, after all. It would be pretty stupid of me not to start doing everything I can to make it a success starting now. Besides, you know the reason I never sold out before? No one was buying.
Anyway, if you're interested in following the progress of the book, I'll be doing most of that talk over there. There's even a blog. I'm fancy!
1) A comment was left on my last entry letting me know that there was a blurb about me (apparently generated by the Publishers Weekly article) in the Sunday Free Press in Winnipeg, a city that, for those of you who are a product of the American public schools like me, is in Canada. How cool is that? I'm NEWS, baby. Canadian news, no less.
2) In order to keep from cluttering up this fine fine blog with news and jabber about the book, I've created a book site over at SchuylersMonster.com. I keep reading how authors are expected to take up more and more of the promotional duties for their work, and I'm getting an early jump on it. I've been looking at different author sites, and I think this is pretty well in line with what's out there.
Just so you know, it's not all sassy and chaotic like this blog. I do not believe I shall be dropping the F-bomb over there with such Lebowskiesque abandon, for example. It's a professional endeavor, after all, with the single purpose of promoting the book. St. Martin's Press is taking a risk on a new writer like me, and I'm certainly going to do everything I can to make sure their investment pays off.
Am I a sell-out? Well, I don't know. It's my book, after all. It would be pretty stupid of me not to start doing everything I can to make it a success starting now. Besides, you know the reason I never sold out before? No one was buying.
Anyway, if you're interested in following the progress of the book, I'll be doing most of that talk over there. There's even a blog. I'm fancy!
September 13, 2006
Howl
Schuyler's upset tonight, as she has been all day, and we're not entirely sure why.
It's hard for her, I know. She doesn't express frustration with her situation very often, but sometimes she just can't say what needs to be said, even when she goes to the BBoW, and that's when she gets angry at her monster.
When she got off the bus at school, her teacher said, she was in a bad mood already. Something was wrong, that much was clear, but she wasn't able to tell them exactly what. She was able to tell them that she didn't feel well, but she was struggling to tell them exactly why.
Finally, they figured out that she had a headache. They figured it out because she told the school nurse, in her own way.
She had the nurse put a band-aid on her head.
Well, there you go. Communication.
I've seen it so many times, I've watched her work her way around communications obstacles in different ways, sometimes imaginative and sometimes crude but always effective. It's a wonder to watch, fascinating to see how her brain works.
The last story in my book takes place a couple of months ago, when we were escaping the heat at one of those little play areas at the mall. Schuyler was confronted by a mean little girl who insisted on bullying her and the other kids by constantly occupying the same space that they were trying to play in. Julie and I very intentionally stayed back to let her figure it out by herself.
The mean girl had two sisters in on the fun with her, but she did most of the bullying, calling other kids names and pushing them around. Schuyler refused to budge, however. At first she tried to just ignore the mean girls, but that only enraged them.
Two things happened that convinced us that even if it wasn't how we'd choose for her confrontations to go down, we nevertheless could see that Schuyler was going to be okay.
The first thing was the worst, and happened before we could intervene. The mean girl hit Schuyler hard, on the shoulder. Before we could stand up and go over to them or even say a word, in no more time than it took for the windup, in fact, Schuyler quite simply hit the girl right in the middle of her face. And that was it. She dispensed what she saw as justice, and that was that.
The mean girl was so surprised that for a moment she didn't say anything. Then she started yelling in Schuyler's face.
"You can't talk! You're crazy! You're STUPID!"
Schuyler looked at her for just a moment, weighed her options (which were few, particularly without her BBoW), then leaned into the girl's face, her fists balled at her side, opened her mouth and howled like an animal. The girl was so shocked that she just walked away.
I'd like it to be different. I'd love for things to be any way other than this. But I suppose Schuyler doesn't have time for sentimentality or best practices or whatever. She's a sweet kid and the most loving human being I have ever known, in a world where frankly, love is almost always suspect.
But when she has to be, she's also the best pragmatist I know. Sometimes, all you get is a howl. I see that and I rage against the injustice. Schuyler sees it, and she howls, without hesitation. I'm proud of her for that.
-----
One quick note, while I'm jabbering away.
Because I am generally agreeable to being thought of as swell, I thought I'd share something an old friend of mine wrote about me. It's actually been a few years since I've spoken to Sari. She disappeared for a long time and so I assumed she'd joined some radical lesbian terrorist group. (I'm not sure whether I'm glad or sorry that she didn't.) She's one of those friends with whom the bonds are there and just waiting to be picked back up like no time at all has passed. I'm glad she's back.
Anyway, thank you, Sari. I like that she calls me "the last of the true gentlemen on earth". It almost makes up for that photo. Look how fat I was back then. Man.
It's hard for her, I know. She doesn't express frustration with her situation very often, but sometimes she just can't say what needs to be said, even when she goes to the BBoW, and that's when she gets angry at her monster.
When she got off the bus at school, her teacher said, she was in a bad mood already. Something was wrong, that much was clear, but she wasn't able to tell them exactly what. She was able to tell them that she didn't feel well, but she was struggling to tell them exactly why.
Finally, they figured out that she had a headache. They figured it out because she told the school nurse, in her own way.
She had the nurse put a band-aid on her head.
Well, there you go. Communication.
I've seen it so many times, I've watched her work her way around communications obstacles in different ways, sometimes imaginative and sometimes crude but always effective. It's a wonder to watch, fascinating to see how her brain works.
The last story in my book takes place a couple of months ago, when we were escaping the heat at one of those little play areas at the mall. Schuyler was confronted by a mean little girl who insisted on bullying her and the other kids by constantly occupying the same space that they were trying to play in. Julie and I very intentionally stayed back to let her figure it out by herself.
The mean girl had two sisters in on the fun with her, but she did most of the bullying, calling other kids names and pushing them around. Schuyler refused to budge, however. At first she tried to just ignore the mean girls, but that only enraged them.
Two things happened that convinced us that even if it wasn't how we'd choose for her confrontations to go down, we nevertheless could see that Schuyler was going to be okay.
The first thing was the worst, and happened before we could intervene. The mean girl hit Schuyler hard, on the shoulder. Before we could stand up and go over to them or even say a word, in no more time than it took for the windup, in fact, Schuyler quite simply hit the girl right in the middle of her face. And that was it. She dispensed what she saw as justice, and that was that.
The mean girl was so surprised that for a moment she didn't say anything. Then she started yelling in Schuyler's face.
"You can't talk! You're crazy! You're STUPID!"
Schuyler looked at her for just a moment, weighed her options (which were few, particularly without her BBoW), then leaned into the girl's face, her fists balled at her side, opened her mouth and howled like an animal. The girl was so shocked that she just walked away.
I'd like it to be different. I'd love for things to be any way other than this. But I suppose Schuyler doesn't have time for sentimentality or best practices or whatever. She's a sweet kid and the most loving human being I have ever known, in a world where frankly, love is almost always suspect.
But when she has to be, she's also the best pragmatist I know. Sometimes, all you get is a howl. I see that and I rage against the injustice. Schuyler sees it, and she howls, without hesitation. I'm proud of her for that.
-----
One quick note, while I'm jabbering away.
Because I am generally agreeable to being thought of as swell, I thought I'd share something an old friend of mine wrote about me. It's actually been a few years since I've spoken to Sari. She disappeared for a long time and so I assumed she'd joined some radical lesbian terrorist group. (I'm not sure whether I'm glad or sorry that she didn't.) She's one of those friends with whom the bonds are there and just waiting to be picked back up like no time at all has passed. I'm glad she's back.
Anyway, thank you, Sari. I like that she calls me "the last of the true gentlemen on earth". It almost makes up for that photo. Look how fat I was back then. Man.
September 12, 2006
Am I serious? No one knows, not even me.
(Taking a writing break, and a non-alcoholic one at that.)
The very first thing I plan to do when I get my advance for the book is buy Klops for Schuyler.
Well, come on. Go look at their other creations and tell me they aren't MADE for Schuyler. Look at Klong, and the Yeti. Her little mind might actually explode.
I just wrote to them to ask if they do commissions. I was thinking just one, for Schuyler, but who knows? I could have the industry's first special needs parenting book with a plush doll tie-in. The possibilities boggle the mind.
Schuyler's monster, indeed.
(Okay, back to work...)
The very first thing I plan to do when I get my advance for the book is buy Klops for Schuyler.
Well, come on. Go look at their other creations and tell me they aren't MADE for Schuyler. Look at Klong, and the Yeti. Her little mind might actually explode.
I just wrote to them to ask if they do commissions. I was thinking just one, for Schuyler, but who knows? I could have the industry's first special needs parenting book with a plush doll tie-in. The possibilities boggle the mind.
Schuyler's monster, indeed.
(Okay, back to work...)
September 11, 2006
Someone tell my mom, please.
"Schuyler's Monster"
Originally uploaded by Citizen Rob.
Well, okay. I guess I can go public now.
(from Publishers Weekly, 9/11/2006 - Deals)Blog to Book
Blogger Robert Rummel-Hudson's life was transformed when his daughter, Schuyler, was diagnosed with an extremely rare neurological disorder called Congenital Bilateral Perisylvian Syndrome (only several hundred cases have been identified worldwide). He began writing about his experiences in an online journal (belovedmonsterandme.blogspot.com) and will now publish his memoir, Schuyler's Monster, with St. Martin's Press; Sheila Curry Oakes acquired world rights from agent Sarah Jane Freymann. Schuyler, now seven, is nonverbal but communicates with the assistance of an electronic device. Rummel-Hudson will ruminate on the struggle with a child's disability while touching on larger issues of family, love and fatherhood. St. Martin's plans a winter 2008 publication.
September 4, 2006
Spelling for Monsters
Schuyler had a spelling test on Friday, like she does every Friday. (I'd like to point out that the idea of little Baby Schuyler taking a first grade spelling test makes me feel like the oldest old fart in Oldfartopia.) This might seem like the most boring thing in the world to share with you, but I want you to stop for just a moment and ponder the metaphorical canyon that one is required to leap across in order to learn to spell when you are incapable of speech.
Imagine learning your letters. Imagine having to learn the sounds that they make, sounds they make for everyone but you. Imagine then having to take those sounds, alien to you in any real, meaningful way, and put them together into words. THEN imagine having to take those words and deconstruct them in your head into the sounds that you can only hear and never make, and use the letters that you have learned to construct those words. Imagine having a teacher say a word to you, sounding it out, and you sitting in a class surrounded by other, neurotypical kids your age who can then put all these pieces together in such a way that it makes perfect sense to them, but will never be able to make sense in a tangible way to you.
Spelling has been challenging for Schuyler. We work with her on it every night, taking the list of words for that week's test and drilling it. We sound it out for her and she types it out, not on her device but on a computer keyboard, because that's what they use in her mainstream first grade class. It's hard for her to write; in addition to stealing her consonants and rendering her non-verbal, her monster fumbles her clumsy little hands, too. So she uses a computer keyboard, and I think that's fine. She's getting quick on her device, but she needs to be able to use the tools of the speaking world, too.
It's frustrating. She tries so hard, and when she can't grasp it because the sounds are hard for her to distinguish, it's easy to lose hope. This has been one of the few times that her condition has caused her real anxiety, and it's heartbreaking. She tries, and when she fails, she loses her focus. I have been telling her that she has to try harder than everyone else in her class. I don't tell her why, because how do you tell a six year-old that she's broken?
Besides, she already knows. She may not care very often, and she's certainly more positive about it than anyone around her, but she knows. Better than anyone, I suspect.
After a couple of weeks with dismal test scores, and after a week of hard drills with her that didn't seem to go anywhere but frustration, we were happily surprised to learn on Friday that she had scored seven out of ten correctly on her test, including the harder words.
I think she simply got tired of the frustration. In her head, I believe she said "Oh, screw this," knocked her monster out of the way and figured it out. It's too early to say whether or not she's really got this down or if she just had a good day, but I think it would be hard for her to "accidentally" spell words correctly. I'm hopeful.
Schuyler clearly has a learning disorder, that's a no shitter. Put a strip of duct tape over your own mouth and leave it there until the day you die, and see how well you grasp the mechanics of language. One unknown issue was always whether or not CBPS was going to take the same bite out of her that it does other CBPS kids.
Schuyler's monster has two ugly stepsisters that loom over our thoughts and fears: seizures and intellectual disability. Seizures we won't know about until (and if) they arrive. I think it is becoming clear, however, that although Schuyler may never be one of the world's great thinkers, she is not hugely mentally impaired. She's clever, she's determined, and most of all she's tenacious. She doesn't like to be told what to do, a trait that I encourage in her every chance I get, so she has to decide she wants to do something first. And then? She just fucking DOES it.
That's Schuyler's nature, and she comes by it honestly. I have no idea how smart she really is, not yet, but I also don't think it matters. I'm not all that smart, either, and I'm doing okay. She's going to do okay, too.
Imagine learning your letters. Imagine having to learn the sounds that they make, sounds they make for everyone but you. Imagine then having to take those sounds, alien to you in any real, meaningful way, and put them together into words. THEN imagine having to take those words and deconstruct them in your head into the sounds that you can only hear and never make, and use the letters that you have learned to construct those words. Imagine having a teacher say a word to you, sounding it out, and you sitting in a class surrounded by other, neurotypical kids your age who can then put all these pieces together in such a way that it makes perfect sense to them, but will never be able to make sense in a tangible way to you.
Spelling has been challenging for Schuyler. We work with her on it every night, taking the list of words for that week's test and drilling it. We sound it out for her and she types it out, not on her device but on a computer keyboard, because that's what they use in her mainstream first grade class. It's hard for her to write; in addition to stealing her consonants and rendering her non-verbal, her monster fumbles her clumsy little hands, too. So she uses a computer keyboard, and I think that's fine. She's getting quick on her device, but she needs to be able to use the tools of the speaking world, too.
It's frustrating. She tries so hard, and when she can't grasp it because the sounds are hard for her to distinguish, it's easy to lose hope. This has been one of the few times that her condition has caused her real anxiety, and it's heartbreaking. She tries, and when she fails, she loses her focus. I have been telling her that she has to try harder than everyone else in her class. I don't tell her why, because how do you tell a six year-old that she's broken?
Besides, she already knows. She may not care very often, and she's certainly more positive about it than anyone around her, but she knows. Better than anyone, I suspect.
After a couple of weeks with dismal test scores, and after a week of hard drills with her that didn't seem to go anywhere but frustration, we were happily surprised to learn on Friday that she had scored seven out of ten correctly on her test, including the harder words.
I think she simply got tired of the frustration. In her head, I believe she said "Oh, screw this," knocked her monster out of the way and figured it out. It's too early to say whether or not she's really got this down or if she just had a good day, but I think it would be hard for her to "accidentally" spell words correctly. I'm hopeful.
Schuyler clearly has a learning disorder, that's a no shitter. Put a strip of duct tape over your own mouth and leave it there until the day you die, and see how well you grasp the mechanics of language. One unknown issue was always whether or not CBPS was going to take the same bite out of her that it does other CBPS kids.
Schuyler's monster has two ugly stepsisters that loom over our thoughts and fears: seizures and intellectual disability. Seizures we won't know about until (and if) they arrive. I think it is becoming clear, however, that although Schuyler may never be one of the world's great thinkers, she is not hugely mentally impaired. She's clever, she's determined, and most of all she's tenacious. She doesn't like to be told what to do, a trait that I encourage in her every chance I get, so she has to decide she wants to do something first. And then? She just fucking DOES it.
That's Schuyler's nature, and she comes by it honestly. I have no idea how smart she really is, not yet, but I also don't think it matters. I'm not all that smart, either, and I'm doing okay. She's going to do okay, too.
Subscribe to:
Posts (Atom)