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.
October 16, 2006
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.
August 31, 2006
Potholes in Memory Lane
As I dig into the writing of this book, I'm finding that the hard part isn't necessarily revisiting the hard times. I'm doing a major re-write of the earliest chapters, so I'm back in New Haven of 2000, with a weird job in a mental hospital and a new baby. I'm revisiting those days in my old journal, and the fact that I had no idea what the future held for us all is surprisingly poignant to me.
It's funny the things I was afraid of as a new parent. None of them came to pass, and yet the monster was there, already in place and fully formed. It would be July of 20001 before Schuyler's pediatrician would ask about Schuyler's speech for the first time, and another two years after that before we ever heard the words "Congenital Bilateral Perisylvian Syndrome".
In 2000, I thought our parenting future was just like everyone else's. I thought things were going to be okay.
Between now and the end of the year, I'm going to be revisiting the slow descent into the very worst of those days, all the uncertainty and the wondering if Schuyler was deaf and hearing the idiotic term "Pervasive Developmental Disorder - Not Otherwise Specified" for the first time. I'll get to hit rock bottom in the summer of 2003 when we finally met the monster, and a few weeks later, I'll get to plummet back down to a year and a half later when we went to Chicago to look for hope and instead found out that as bad as we thought it was, Schuyler's monster was even uglier than we'd been told.
If I progress on schedule, sometime in November I'll be back in Austin circa spring of 2004 learning about the Big Box of Words and fundraising for Schuyler's shot at having a voice. December will bring the fight, and the hope, and by the end of the year, I should be done.
Where Schuyler is concerned, I sometimes get so caught up in trying to prepare for the future that I sometimes forget that the past was no picnic, either. If I could go back in time and talk to the me of 2000, I'm not exactly sure what I'd tell him.
"Brace yourself, man."
It's funny the things I was afraid of as a new parent. None of them came to pass, and yet the monster was there, already in place and fully formed. It would be July of 20001 before Schuyler's pediatrician would ask about Schuyler's speech for the first time, and another two years after that before we ever heard the words "Congenital Bilateral Perisylvian Syndrome".
In 2000, I thought our parenting future was just like everyone else's. I thought things were going to be okay.
Between now and the end of the year, I'm going to be revisiting the slow descent into the very worst of those days, all the uncertainty and the wondering if Schuyler was deaf and hearing the idiotic term "Pervasive Developmental Disorder - Not Otherwise Specified" for the first time. I'll get to hit rock bottom in the summer of 2003 when we finally met the monster, and a few weeks later, I'll get to plummet back down to a year and a half later when we went to Chicago to look for hope and instead found out that as bad as we thought it was, Schuyler's monster was even uglier than we'd been told.
If I progress on schedule, sometime in November I'll be back in Austin circa spring of 2004 learning about the Big Box of Words and fundraising for Schuyler's shot at having a voice. December will bring the fight, and the hope, and by the end of the year, I should be done.
Where Schuyler is concerned, I sometimes get so caught up in trying to prepare for the future that I sometimes forget that the past was no picnic, either. If I could go back in time and talk to the me of 2000, I'm not exactly sure what I'd tell him.
"Brace yourself, man."
August 28, 2006
I know smart people.
There are some people that, when they get published, you secretly wonder down in your (my?) cold, jealous heart how they got the Golden Ticket while you're still stuck writing for your company newsletter and accumulating the "thanks but no thanks" letters.
And then there are the ones for whom there is no doubt whatsoever why they are meeting with success.
Congratulations, Campbell Award-winner John Scalzi! Keep on keepin' on.
And then there are the ones for whom there is no doubt whatsoever why they are meeting with success.
Congratulations, Campbell Award-winner John Scalzi! Keep on keepin' on.
August 26, 2006
Monkey Paw
First of all, an announcement. The Last Samurai is on tv right now, and it's on the scene where the samurai are attacked by assassin ninjas. Schuyler has just informed us that she is a ninja. She is showing us her ninja moves right now.
Just so you know. She really is my pretty ninja. She'll mess you up, bitches.
As you can imagine, it's been a crazy week. I never really thought the whole hypothetical experience through, what it would be like to get a book deal. I guess if I imagined it at all, my fantasy scene would have been similar to winning the Publisher's Clearing House Sweepstakes, like I'd get a knock on the door and guys in suits and giant toothy smiles would say, "Robert Rummel-Hudson! We're buying your book! Sign here and you can have this big fancy check and a spot on Jon Stewart and all the hot undergrad English majors you can handle!"
The reality is that after a week of emails and phone calls and questions about deadlines and percentages and marketing and publishing terms that I had to look up online (before answering the same thing every time: "Sounds great!"), the process is still, well, in process. (Yeah, that was an eloquent turn of phrase from the fancy pants writer.) I suspect the next few days will bring some closure, and with it perhaps the giant check and the hot young chickies.
And then I have to finish this thing. I have until the end of January to turn in a finished manuscript, and I've mapped out the amount of time I need to complete it before the end of the year, giving me a few weeks to pretty up the mess when I'm done. It works out to about a chapter a week. As a fun little online component of the process, I'll list the name of the chapter I'm currently working on over in the sidebar. If you don't see it change once a week or so, you have my permission to send me an email that says "What the fuck, Chuck?"
Through it all, life continues. Schuyler continues.
I have to admit, this has been a slightly bittersweet experience. For as long as I can remember, I've wanted to be a published writer. It's been a consistent dream of mine, but now that it's coming true, it feels a little bit like a monkey paw story. (For those of you with a clicking allergy, the reference is to a 1902 story by W. W. Jacobs, in which a dead monkey paw grants wishes but with an ugly price.) I've been in such a celebratory mood all week, but when I sit down to work on the book, the reality of this story blows through my mood like smoke.
I'm thrilled that this book is going to be published. Well, of course I am. Part of that thrill is the weird rush of a life's dream coming to pass, like the first drop of a roller coaster. Part of it feels like a small measure of justice for Schuyler, as if God can do this to her and I'm powerless to stop him, but at the very least I'm going to let the world know what a bully he is. And part of it has the whiff of evangelism, bringing her story to people who might have some kind of monster in their own lives. Schuyler's an inspiring kid, she never loses her spirit even when we do. And make no mistake, we do, a lot.
In the end, as much as I'd like to play the part of Talented Author Type, the reality is that this book is getting published because of Schuyler. She's writing her own story, she's going to make her own way and knock down whomever she has to in order to do so.
Me? I'm just writing it down.
Just so you know. She really is my pretty ninja. She'll mess you up, bitches.
As you can imagine, it's been a crazy week. I never really thought the whole hypothetical experience through, what it would be like to get a book deal. I guess if I imagined it at all, my fantasy scene would have been similar to winning the Publisher's Clearing House Sweepstakes, like I'd get a knock on the door and guys in suits and giant toothy smiles would say, "Robert Rummel-Hudson! We're buying your book! Sign here and you can have this big fancy check and a spot on Jon Stewart and all the hot undergrad English majors you can handle!"
The reality is that after a week of emails and phone calls and questions about deadlines and percentages and marketing and publishing terms that I had to look up online (before answering the same thing every time: "Sounds great!"), the process is still, well, in process. (Yeah, that was an eloquent turn of phrase from the fancy pants writer.) I suspect the next few days will bring some closure, and with it perhaps the giant check and the hot young chickies.
And then I have to finish this thing. I have until the end of January to turn in a finished manuscript, and I've mapped out the amount of time I need to complete it before the end of the year, giving me a few weeks to pretty up the mess when I'm done. It works out to about a chapter a week. As a fun little online component of the process, I'll list the name of the chapter I'm currently working on over in the sidebar. If you don't see it change once a week or so, you have my permission to send me an email that says "What the fuck, Chuck?"
Through it all, life continues. Schuyler continues.
I have to admit, this has been a slightly bittersweet experience. For as long as I can remember, I've wanted to be a published writer. It's been a consistent dream of mine, but now that it's coming true, it feels a little bit like a monkey paw story. (For those of you with a clicking allergy, the reference is to a 1902 story by W. W. Jacobs, in which a dead monkey paw grants wishes but with an ugly price.) I've been in such a celebratory mood all week, but when I sit down to work on the book, the reality of this story blows through my mood like smoke.
I'm thrilled that this book is going to be published. Well, of course I am. Part of that thrill is the weird rush of a life's dream coming to pass, like the first drop of a roller coaster. Part of it feels like a small measure of justice for Schuyler, as if God can do this to her and I'm powerless to stop him, but at the very least I'm going to let the world know what a bully he is. And part of it has the whiff of evangelism, bringing her story to people who might have some kind of monster in their own lives. Schuyler's an inspiring kid, she never loses her spirit even when we do. And make no mistake, we do, a lot.
In the end, as much as I'd like to play the part of Talented Author Type, the reality is that this book is getting published because of Schuyler. She's writing her own story, she's going to make her own way and knock down whomever she has to in order to do so.
Me? I'm just writing it down.
August 25, 2006
Technical Note
Quickly, if you are sending email to me at rhudson@digitalism.com, you are sending them into a black hole. It appears to be dead, and dead for good. Delete that address from your address books and coldly banish it from your hearts forever.
On the other hand, rob@darn-tootin.com and rhudsonphoto@gmail.com work splendidly.
Okay, back to what you were doing. More from me soon, after this adrenaline-fueled frenzy of book prep runs its course...
On the other hand, rob@darn-tootin.com and rhudsonphoto@gmail.com work splendidly.
Okay, back to what you were doing. More from me soon, after this adrenaline-fueled frenzy of book prep runs its course...
August 23, 2006
Announcement
Okay, so let's make this official. In a slightly vague sort of way.
Look for Schuyler's Monster with a target publication of Spring 2008 (with an eye towards Father's Day), most likely in hardcover, possibly with photographs.
And uh, that's it, actually. I've been getting schooled all day on the finer points of publishing contract speak, having to make decisions on things like First Serial Rights (for things like publishing excerpts in magazines, etc.), World Rights, and lord help us all, the audio edition. (Personally, I think James Earl Jones would sound very distinguished saying the word "assmonkey".)
I'll obviously be rattling on about this more as things become settled, but there it is. A lot of things I'd been planning, such as the podcast, might be on hold for a bit until I get this thing finished (with a likely deadline of the end of January), but I'll no doubt have lots to share here during the process, for those who are interested.
Now if you'll excuse me, I have a "So, how do you like me NOW?" email to compose for ex-girlfriends, my high school guidance counselor, and at least one former employer.
That was a joke, by the way.
Look for Schuyler's Monster with a target publication of Spring 2008 (with an eye towards Father's Day), most likely in hardcover, possibly with photographs.
And uh, that's it, actually. I've been getting schooled all day on the finer points of publishing contract speak, having to make decisions on things like First Serial Rights (for things like publishing excerpts in magazines, etc.), World Rights, and lord help us all, the audio edition. (Personally, I think James Earl Jones would sound very distinguished saying the word "assmonkey".)
I'll obviously be rattling on about this more as things become settled, but there it is. A lot of things I'd been planning, such as the podcast, might be on hold for a bit until I get this thing finished (with a likely deadline of the end of January), but I'll no doubt have lots to share here during the process, for those who are interested.
Now if you'll excuse me, I have a "So, how do you like me NOW?" email to compose for ex-girlfriends, my high school guidance counselor, and at least one former employer.
That was a joke, by the way.
August 21, 2006
Waiting is a special hell.
So yeah. Waiting for the phone call.
Waiting.
I keep looking at the phone, trying to coax a ring out of it. Nothing. Maybe if I wiggle my eyebrows. No? How about if I bug my eyes out? Nothing? I could try a Samuel Jackson on it.
"I want this motherfucking phone to motherfucking RING!"
No? Too last week?
Maybe it's not working. What if my phone is broken and they try to call?
"Wow, his phone doesn't work. How rude! Screw this guy."
What if I pick it up to check, and that's the moment they call? What if they get my voice mail and say, "Wow, he's busy. He's not going to have the time to devote to us. Let's call Dan Brown and see if he's got lunch plans."
Okay, I checked. Dial tone.
I wonder if they tried to call just now when I did that?
Yeah. I'm a little nervous.
Waiting.
I keep looking at the phone, trying to coax a ring out of it. Nothing. Maybe if I wiggle my eyebrows. No? How about if I bug my eyes out? Nothing? I could try a Samuel Jackson on it.
"I want this motherfucking phone to motherfucking RING!"
No? Too last week?
Maybe it's not working. What if my phone is broken and they try to call?
"Wow, his phone doesn't work. How rude! Screw this guy."
What if I pick it up to check, and that's the moment they call? What if they get my voice mail and say, "Wow, he's busy. He's not going to have the time to devote to us. Let's call Dan Brown and see if he's got lunch plans."
Okay, I checked. Dial tone.
I wonder if they tried to call just now when I did that?
Yeah. I'm a little nervous.
August 18, 2006
So far, this weekend's looking a hell of a lot better than last weekend.
So let me ask you something. What is the most annoying kind of blog entry that I could subject you to? Besides diabetes or the goopy toe? How about the one where I say I have big news, but I can't tell you what it is? That one's a pain in the ass, isn't it?
I have big news, but I can't tell you what it is. Not just yet.
Call me superstitious. When everything's signed and legally binding, you'll be the first to know.
(Like you can't figure it out on your own.)
I have big news, but I can't tell you what it is. Not just yet.
Call me superstitious. When everything's signed and legally binding, you'll be the first to know.
(Like you can't figure it out on your own.)
August 16, 2006
"Space Boy, Fly Girl, living in the Underworld..."
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.
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.
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