Living our lives in such a public way, even before the book, has occasionally led to some interesting and unique experiences, mostly centering around Schuyler. She gets to people, she emotionally affects people out there who never meet her except through my writing, and they express that connection in a variety of artistic ways. I can't even begin to tell you just how cool that can be.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
November 29, 2007
November 28, 2007
Harvey does not in fact want to eat you
As an ugly American, I haven't heard of any of the parties involved, including Heat Magazine, but the sentiments are familiar. Make fun of a kid with a disability, get called out for it, issue a heartfelt apology, hope that people start buying your product again.
Heat magazine apologises to Jordan for using disabled son on sticker.
I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.
Heat magazine apologises to Jordan for using disabled son on sticker.
I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.
November 26, 2007
Thirty-ten
You know, I can't complain too much about this birthday. I mean, this is the year my book comes out, after all, plus I'm still alive, having managed to avoid eating or drinking myself to death or being killed by internet stalkers. My hair is graying a little and thinning a little, but not too much of either.
Still, though.
November 20, 2007
November 19, 2007
I got some love
I got my first review, and I'm very pleased with it. Kirkus Reviews is an industry trade publication, available to libraries, bookstores and their buyers, magazines, media, etc. An article in the New York Times a few years ago referred to Kirkus as "a sort of Consumer Reports for the book publishing industry", and an appearance there can lead to other reviews, media attention, and general fancy pantsedness.
I'm just happy that the word "crap" doesn't appear anywhere within.
---
Kirkus Reviews
12/1/07
Rummel-Hudson, Robert
SCHUYLER’S MONSTER: A Father’s Journey with His Wordless Daughter
The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.
After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.
Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.
I'm just happy that the word "crap" doesn't appear anywhere within.
---
Kirkus Reviews
12/1/07
Rummel-Hudson, Robert
SCHUYLER’S MONSTER: A Father’s Journey with His Wordless Daughter
The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.
After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.
Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.
Dancing away the monster
Excerpt: "Ballerina dreams: A True Story"
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
November 17, 2007
Because "separate but equal" worked out so well the first time...
The following was posted on another site, in response to this. While it's unusually blunt, it nevertheless represents a viewpoint that I've heard many times before, in some form or another.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
Every special ed kid costs schools more money. They are incredibly expensive. Wealthy parents get lawyers and game the system for millions, and all the rest of the kids get inadequate educations that still cost more money.
They should be removed from the system and their education funded differently. Public schools should be reserved for the "neurotypical".
That doesn't mean they shouldn't receive funding; it should just come from a different pool of money–health care, probably.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
November 15, 2007
Sometimes it's not monsters that we fight
From the CCN website (which I usually visit for the guilty pleasure of reading about people being eaten by alligators and sharks and bears):
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
Tell me about it.
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
"Parents of children with severe disabilities are often the experts on their children. They're with them all the time."
The trick here, she says, is to stand firm, even when you know you're annoying the doctor.
"You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly. For example, Green could have asked why the doctor didn't want to use one of the other potent antibiotics.
Rackner says patients can keep in mind stock phrases they can use to make the conversations easier.
For example, she says, one way Green could have started the conversation is: "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7."
Tell me about it.
New Nomads
I wrote a little somethin' somethin' about special needs parenting for PajamasMedia, called The New Nomads: Families in Search of Special Education. Go check it out and spread the love.
Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.
---
Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...
Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.
---
Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...
November 14, 2007
I have choices!
So what is the thing that I should spend time fretting about today? The determination by the dealership that Julie's car is officially dead (turning us into a one-car family, with me working an hour away from Plano), or the fun fact that I do believe I am getting another kidney stone?
Decisions, decisions!
Decisions, decisions!
November 12, 2007
"Paths of Glory"
I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.
You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.
However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.
I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.
Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.
I did not receive a response. I did not require one.
-----
Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com
I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.
Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.
Robert Rummel-Hudson
Plano, TX
Money concerns force DSO to drop concert
Britten's 'Requiem' 'very expensive'
One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.
"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."
You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.
However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.
I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.
Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.
I did not receive a response. I did not require one.
-----
Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com
I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.
Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.
Robert Rummel-Hudson
Plano, TX
November 8, 2007
Monster Paw
It's been something of a Fancy Pants Author Week, which is always a nice alternative to Tragedy Dad Week (which I haven't had many of in a long time, knock on maybe-fake Ikea wood), Sickly Diabetic Week (also not too frequent now, knock on my pancreas) or Poverty Schmuck Week (well, that's more of a chronic condition than a single week). I anticipate having a Rough Thirty-tenth Birthday Week soon, but I'm not ready to face that just yet so we will speak of it no more.
The latest on the book is this. The bad news, not entirely unexpected, is that aside from a possible Texas schedule, there is not a book tour in the works. I won't lie to you; I'm disappointed, although for entirely personal reasons. The fancy pants book tour is part of every writer's publication fantasy. It's right up there with imagining the girl who broke your heart in high school, now sitting in her trailer with her six kids, watching you share a tender moment with Oprah on her Rent-to-Own television. (I have never claimed not to have Issues.)
But the publishing world is changing, and effective marketing is happening in other places. Radio, television, and especially the Internet are far more effective media tools, and St. Martin's thinks (and I agree) that because of my years of online troublemaking and exposure, this book is uniquely placed to thrive in this shiny new media world. Book tours are expensive, and their effectiveness in promoting books or authors is questionable. Also, it's worth pointing out that since I began this whole journey over a year ago, this is actually the first time I've wanted something from St. Martin's that they've not given me. I've been treated like a pretty princess so far, and I'd be a jerk to turn all Veruca Salt on them now.
Mostly, though, I just thought it sounded like fun.
There are some other things coming down the pike, however, all of which I will share as they firm up. (One of them, a magazine feature, might just make you poop your panties. It did me, at least metaphorically.) And if you live in Texas, I might be coming to your town, by golly, since we're hoping to put together a swing through the Best of the Big Red State. The first reading/signing will take place right here in Plano. Discerning stalkers will want to come to this one, as my whole family will be there. (Trust me, it's much better than just showing up at my home with your kids so they can make friends with Schuyler. And I'm not even making that up.) I also hear that the PR person running the event at the store is extra swell.
It's funny, dealing with all the craziness that accompanies this book, because in a way, it feels like distraction, like taking the monster and dressing it up in a tuxedo. Perhaps it will sing "Puttin' on the Ritz" for us at the signing. I've always maintained that this book was something of a monkey paw, in that it represents a long-time dream for me, but on a subject matter that I would obviously have never picked in a thousand years. But as this process continues, I am making peace with it. Sometimes, I am learning, the book picks the author.
My publicist needed some current information on polymicrogyria, so I contacted the doctors who are in the know. As I look through the information they sent me, all the old feelings come rushing back, that dread of the monster that we felt the first time we were introduced. It's weird, looking at it in ugly medical terms, the same ones that scared us so badly four years ago. (Can it really have been that long?) Much of it is written in medicalese that makes little sense to me. But some of it still jumps off the page.
"Developmental language disorder can be associated with BPP (bilateral perisylvian polymicrogyria), and its severity depends on the extent of the cortical damage. Patients with marked dysarthria are often labelled as severely retarded, although they may have normal comprehension."
...
"Most patients develop multiple seizure types, and seizure control is poor in more than half the cases. Frequent seizures may aggravate speech dysfunction and result in progressive deterioration. In patients with severe and disabling seizures, especially drop attacks, callosotomy can be considered."
...
"Epilepsy was found in almost 90% of cases..."
I'm ecstatic to have this book coming out; we all are, especially Schuyler. (Ask her about it the next time you're stalking us and just watch her face.) But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes.
I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one.
The latest on the book is this. The bad news, not entirely unexpected, is that aside from a possible Texas schedule, there is not a book tour in the works. I won't lie to you; I'm disappointed, although for entirely personal reasons. The fancy pants book tour is part of every writer's publication fantasy. It's right up there with imagining the girl who broke your heart in high school, now sitting in her trailer with her six kids, watching you share a tender moment with Oprah on her Rent-to-Own television. (I have never claimed not to have Issues.)
But the publishing world is changing, and effective marketing is happening in other places. Radio, television, and especially the Internet are far more effective media tools, and St. Martin's thinks (and I agree) that because of my years of online troublemaking and exposure, this book is uniquely placed to thrive in this shiny new media world. Book tours are expensive, and their effectiveness in promoting books or authors is questionable. Also, it's worth pointing out that since I began this whole journey over a year ago, this is actually the first time I've wanted something from St. Martin's that they've not given me. I've been treated like a pretty princess so far, and I'd be a jerk to turn all Veruca Salt on them now.
Mostly, though, I just thought it sounded like fun.
There are some other things coming down the pike, however, all of which I will share as they firm up. (One of them, a magazine feature, might just make you poop your panties. It did me, at least metaphorically.) And if you live in Texas, I might be coming to your town, by golly, since we're hoping to put together a swing through the Best of the Big Red State. The first reading/signing will take place right here in Plano. Discerning stalkers will want to come to this one, as my whole family will be there. (Trust me, it's much better than just showing up at my home with your kids so they can make friends with Schuyler. And I'm not even making that up.) I also hear that the PR person running the event at the store is extra swell.
It's funny, dealing with all the craziness that accompanies this book, because in a way, it feels like distraction, like taking the monster and dressing it up in a tuxedo. Perhaps it will sing "Puttin' on the Ritz" for us at the signing. I've always maintained that this book was something of a monkey paw, in that it represents a long-time dream for me, but on a subject matter that I would obviously have never picked in a thousand years. But as this process continues, I am making peace with it. Sometimes, I am learning, the book picks the author.
My publicist needed some current information on polymicrogyria, so I contacted the doctors who are in the know. As I look through the information they sent me, all the old feelings come rushing back, that dread of the monster that we felt the first time we were introduced. It's weird, looking at it in ugly medical terms, the same ones that scared us so badly four years ago. (Can it really have been that long?) Much of it is written in medicalese that makes little sense to me. But some of it still jumps off the page.
"Developmental language disorder can be associated with BPP (bilateral perisylvian polymicrogyria), and its severity depends on the extent of the cortical damage. Patients with marked dysarthria are often labelled as severely retarded, although they may have normal comprehension."
...
"Most patients develop multiple seizure types, and seizure control is poor in more than half the cases. Frequent seizures may aggravate speech dysfunction and result in progressive deterioration. In patients with severe and disabling seizures, especially drop attacks, callosotomy can be considered."
...
"Epilepsy was found in almost 90% of cases..."
I'm ecstatic to have this book coming out; we all are, especially Schuyler. (Ask her about it the next time you're stalking us and just watch her face.) But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes.
I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one.
November 5, 2007
Does the cat-building make it science fiction?
Well, it's November and NaNoWriMo time, which explains why everyone seems to be writing about writing this month. (My favorites are the people who spend time on their blogs writing about not being able to write, or even better, not having enough time to write.) While I don't really have anything to add, I thought it might be fun to share something that was sent home by Schuyler's teacher the other day. I particularly like how she's working her real world experience into her fiction.
Because after genetically engineering a cat, nothing hits the spot like a little pizza...
Once there was a scarecrow. He went to New York with his best friend Schuyler. Schuyler and the scarecrow played outside in the sandbox. Schuyler built a doll. The scarecrow made a cat. Schuyler and the scarecrow eat a pizza.
Because after genetically engineering a cat, nothing hits the spot like a little pizza...
November 1, 2007
All Hallows Eve for Monsters, broken and otherwise
I had a pretty good Halloween, as evidenced by what arrived from Fed-Ex:
(I've been coveting them like the Gollum with my Precioussssss...)
As for Schuyler, she had a great time as well, like she does every Halloween.
This year, she opted for a sort of vampire-y, Goth-y chick look. The tattoos were a gift from a cool friend when we were in New York, and it would be no exaggeration to say that she loves them with something bordering on obsession. The one on her face? Still there when she went to school this morning. I suspect she's the only girl at her conservative little Plano school with art on her face today, although I also suspect that she's the envy of every little Hannah Montana-wannabe in her class.
Even though it's a sort of punky look, we agreed to this costume for the simple reason that it was a long dress, with sleeves and no bare belly. If you're the parent of a little girl, you know just how hard it is to find a costume that isn't either goofy ("Look, I'm a Care Bear!") or something from the Li'l Prostitutes Collection(TM). Half the girls we saw looked like they were part of a child molester sting operation. If looking at an eight year-old with low rise hot pants and a bare midriff doesn't make you uncomfortable, then you might want to check yourself in for treatment somewhere.
And just like that, railing against the wicked ways of Kids These Days, I became an old man. Just in time for... that birthday, too.
This year, Schuyler trick-or-treated with her best friend from her Box Class. I don't know why we never did it before. In years past, Schuyler either did the candy rounds with a little neurotypical friend of hers whom she loved unconditionally and heartbreakingly but who was frankly a toxic little bully to her, or she went by herself, accompanied only by her fussy, boring, smelly old parents.
This year, tearing from house to house with her best friend, laughing hard and communicating wordlessly, there was no imbalance between a talking child and her, no bossy kid treating her like some sort of plaything or mascot. There was only fun, and crazy amounts of sugar, and scary displays to scream at. They had the time of their lives, and not only did not of the people handing out candy have a problem with a mute little goth girl and her Supergirl friend, I'm not actually sure that anyone noticed anything different about them.
It's extremely important for Schuyler to present her difference to the world with unflinching courage and without hesitation or apology. Nevertheless, much of the time, maybe even most of the time, she moves across the face of this planet incognito, her freak flag flying but unnoticed, like a visiting extraterrestrial who walks among us.
In that sense, I sometimes wish that every day could be Halloween. For Schuyler, in a way, every day is.
(I've been coveting them like the Gollum with my Precioussssss...)
As for Schuyler, she had a great time as well, like she does every Halloween.
This year, she opted for a sort of vampire-y, Goth-y chick look. The tattoos were a gift from a cool friend when we were in New York, and it would be no exaggeration to say that she loves them with something bordering on obsession. The one on her face? Still there when she went to school this morning. I suspect she's the only girl at her conservative little Plano school with art on her face today, although I also suspect that she's the envy of every little Hannah Montana-wannabe in her class.
Even though it's a sort of punky look, we agreed to this costume for the simple reason that it was a long dress, with sleeves and no bare belly. If you're the parent of a little girl, you know just how hard it is to find a costume that isn't either goofy ("Look, I'm a Care Bear!") or something from the Li'l Prostitutes Collection(TM). Half the girls we saw looked like they were part of a child molester sting operation. If looking at an eight year-old with low rise hot pants and a bare midriff doesn't make you uncomfortable, then you might want to check yourself in for treatment somewhere.
And just like that, railing against the wicked ways of Kids These Days, I became an old man. Just in time for... that birthday, too.
This year, Schuyler trick-or-treated with her best friend from her Box Class. I don't know why we never did it before. In years past, Schuyler either did the candy rounds with a little neurotypical friend of hers whom she loved unconditionally and heartbreakingly but who was frankly a toxic little bully to her, or she went by herself, accompanied only by her fussy, boring, smelly old parents.
This year, tearing from house to house with her best friend, laughing hard and communicating wordlessly, there was no imbalance between a talking child and her, no bossy kid treating her like some sort of plaything or mascot. There was only fun, and crazy amounts of sugar, and scary displays to scream at. They had the time of their lives, and not only did not of the people handing out candy have a problem with a mute little goth girl and her Supergirl friend, I'm not actually sure that anyone noticed anything different about them.
It's extremely important for Schuyler to present her difference to the world with unflinching courage and without hesitation or apology. Nevertheless, much of the time, maybe even most of the time, she moves across the face of this planet incognito, her freak flag flying but unnoticed, like a visiting extraterrestrial who walks among us.
In that sense, I sometimes wish that every day could be Halloween. For Schuyler, in a way, every day is.
