Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
October 31, 2008
My Beloved Monster
Halloween 2008
Sometimes, even in the midst of our fun, I catch a moment on camera that I don't even really notice until I'm looking at the photos later. For just a second, the camera catches Schuyler in what appears to be a moment of melancholy, and for that instant, I wonder if she and I share some of the sadness, even though I try to take it away from her and make it all my own.
If she does feel any of that sadness (and sometimes I think, "How could she not?"), it's fleeting. In a lot of ways we are the same, she and I. We both feel sadness sometimes, and we both internalize it almost completely.
But she deals with it better, I think, puts it away faster and buries it deeper, smothers it with her love without limits, her unconditional love, her love without fear. In that way, Schuyler is free. It's one of the many things she still has to teach me.
My beloved monster and me
We go everywhere together
Wearing a raincoat that has four sleeves
Gets us through all kinds of weather
She will always be the only thing
That comes between me and the awful sting
That comes from living in a world that's so damn mean
-- Eels
October 29, 2008
Story in Plano Profile
Plano Profile, "Author Robert Rummel-Hudson moves his family to Plano for his special-needs daughter"
by Britney Porter
"Schuyler is a princess whose story is unlike most, and unlike most fairy tales, the monster in her story is one she cannot see or touch or even run away from. It is Bilateral Perisylvian Polymicrogyria (BPP), a rare neurological disorder that affects her speech, and after five years of doctors visits and one alarming parent-teacher conference at a school in Austin, Robert Rummel-Hudson and his wife Julie moved to Plano to try to slay the beast.
"Read the entire story!"
by Britney Porter
"Schuyler is a princess whose story is unlike most, and unlike most fairy tales, the monster in her story is one she cannot see or touch or even run away from. It is Bilateral Perisylvian Polymicrogyria (BPP), a rare neurological disorder that affects her speech, and after five years of doctors visits and one alarming parent-teacher conference at a school in Austin, Robert Rummel-Hudson and his wife Julie moved to Plano to try to slay the beast.
"Read the entire story!"
October 28, 2008
God can wait a little longer
It started innocently enough. Schuyler came home from school with a little sticker on her device. That's not unusual; it usually has about half a dozen or so stickers on its case at any given time. This one was a little different, however, and it gave us pause.
It was an angel.
We didn't get too worked up about it, partly because we try not to be THOSE earnest, humorless Whole Foods liberals. I'm sure that whoever gave it to her didn't even think about it, much less set out to somehow evangelize to our daughter. Also, Schuyler thought it was a fairy anyway, so we even got to dodge the explanation.
It did start a larger discussion with Schuyler, though, about religion and what to say to anyone who decides to take it upon themselves to save our kid's immortal soul. It's happened in front of us a few times, after all, and so it's only logical to expect it to happen when she's at school or otherwise away from us.
Here's the thing. I don't care if Schuyler learns about or even buys into a belief system other than ours. In fact, Julie's no-bullshit Atheism conflicts pretty strongly with my own metaphor-laden Agnosticism. (And please, I beg of you, before you start asking what's the difference or making snotty little remarks about how they are basically the same, please do me and yourself a favor and go read up. Seriously. Your hungry brain will thank you.) We make it work just fine because we don't need to have a monolithic belief system in our home. We intend to make sure that Schuyler gets a good, relatively balanced overview of the belief systems of the world.
But not yet. Not now. Schuyler isn't ready. I know there are people out there who took their eight-year-olds to see The Passion of the Christ (wackadoos), and plenty of parents send their young kids to Sunday school. But here's the thing about that. These are parents who have chosen to raise their kids within their own belief system, with the intention of their kids adopting that belief system for themselves. And that's great for them. I have no problem with that.
I guess in a sense, by raising Schuyler in what is technically an Agnostic environment, I'm kind of doing the same thing, in my own way. But it is the absence of Big-F-Faith and restrictive doctrine that will give her paths of her own choosing down the road. Julie wants to expose Schuyler to other religions as well. (Sometimes I think Julie is sort of a crappy Atheist, honestly.) When Schuyler is ready, we'll open up a whole world for her. It sounds like fun to me.
But not now. Schuyler is of an age, or perhaps more importantly of a stage of development, in which she still takes things at face value. Does she understand the difference between Belief and Fact? I don't know, but I don't really think so. Maybe soon, but for now, she's still very susceptible to suggestion. It's tricky, but for now, this is the right thing to do for her. We choose to delay that conversation a little longer, rather than confuse her now, which is exactly what we would do.
We'll have that conversation with her one day, and probably sooner than later, but it'll happen when we think she's ready. So for the time being, if anyone tries to talk to her about God or church or Jesus (sadly, probably the only red flag words that she really needs to beware of in Plano, Texas), she knows to simply say "No, thank you." That's how it's going to be for now. She knows how to say no to drugs and Jesus.
Her one dalliance in the world of religion? She has chosen to be the Devil for Halloween. Well, the Chicky Devil, anyway. That ought to raise a few eyebrows. Not to worry, though. Lest anyone see fit to try to save her little soul, she'll be protected by a 6'2" chicken, plus whatever Julie comes up with. (She's working on a bat costume, although we'll see if her ambition lasts all the way through the final stages of production.)
I don't care how devout you are. Being chided by a giant chicken won't be fun. Don't try me.
It was an angel.
We didn't get too worked up about it, partly because we try not to be THOSE earnest, humorless Whole Foods liberals. I'm sure that whoever gave it to her didn't even think about it, much less set out to somehow evangelize to our daughter. Also, Schuyler thought it was a fairy anyway, so we even got to dodge the explanation.
It did start a larger discussion with Schuyler, though, about religion and what to say to anyone who decides to take it upon themselves to save our kid's immortal soul. It's happened in front of us a few times, after all, and so it's only logical to expect it to happen when she's at school or otherwise away from us.
Here's the thing. I don't care if Schuyler learns about or even buys into a belief system other than ours. In fact, Julie's no-bullshit Atheism conflicts pretty strongly with my own metaphor-laden Agnosticism. (And please, I beg of you, before you start asking what's the difference or making snotty little remarks about how they are basically the same, please do me and yourself a favor and go read up. Seriously. Your hungry brain will thank you.) We make it work just fine because we don't need to have a monolithic belief system in our home. We intend to make sure that Schuyler gets a good, relatively balanced overview of the belief systems of the world.
But not yet. Not now. Schuyler isn't ready. I know there are people out there who took their eight-year-olds to see The Passion of the Christ (wackadoos), and plenty of parents send their young kids to Sunday school. But here's the thing about that. These are parents who have chosen to raise their kids within their own belief system, with the intention of their kids adopting that belief system for themselves. And that's great for them. I have no problem with that.
I guess in a sense, by raising Schuyler in what is technically an Agnostic environment, I'm kind of doing the same thing, in my own way. But it is the absence of Big-F-Faith and restrictive doctrine that will give her paths of her own choosing down the road. Julie wants to expose Schuyler to other religions as well. (Sometimes I think Julie is sort of a crappy Atheist, honestly.) When Schuyler is ready, we'll open up a whole world for her. It sounds like fun to me.
But not now. Schuyler is of an age, or perhaps more importantly of a stage of development, in which she still takes things at face value. Does she understand the difference between Belief and Fact? I don't know, but I don't really think so. Maybe soon, but for now, she's still very susceptible to suggestion. It's tricky, but for now, this is the right thing to do for her. We choose to delay that conversation a little longer, rather than confuse her now, which is exactly what we would do.
We'll have that conversation with her one day, and probably sooner than later, but it'll happen when we think she's ready. So for the time being, if anyone tries to talk to her about God or church or Jesus (sadly, probably the only red flag words that she really needs to beware of in Plano, Texas), she knows to simply say "No, thank you." That's how it's going to be for now. She knows how to say no to drugs and Jesus.
Her one dalliance in the world of religion? She has chosen to be the Devil for Halloween. Well, the Chicky Devil, anyway. That ought to raise a few eyebrows. Not to worry, though. Lest anyone see fit to try to save her little soul, she'll be protected by a 6'2" chicken, plus whatever Julie comes up with. (She's working on a bat costume, although we'll see if her ambition lasts all the way through the final stages of production.)
I don't care how devout you are. Being chided by a giant chicken won't be fun. Don't try me.
October 27, 2008
Appearance at the University of Dayton
Guest Lecturer
University of Dayton
Department of Sociology, Anthropology and Social Work
Thursday, November 6, 2008
6:00 - 9:00pm
Sears Recital Hall
300 College Park Avenue
Dayton, OH 45409
FIGHTING MONSTERS WITH RUBBER SWORDS — Robert Rummel-Hudson has a daughter who hears and understands everything but cannot speak. He has faced the challenges of finding a good education for his daughter and a supportive community, as well as the challenge of raising a special needs child. Rummel-Hudson will discuss those challenges and the value of a supportive community at 6:30 p.m. Thursday, Nov. 6, in the Sears Recital Hall in the Jesse Philips Humanities Center. It is free and open to the public. Rummel-Hudson wrote Schuyler's Monster: A Father's Journey with His Wordless Daughter, about his daughter.
"Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal," said Charlotte Moore, author of George & Sam, a book about raising two autistic children. UD's Center for Social Concern, College of Arts and Sciences, criminal justice studies and School of Education and Allied Professions are sponsoring the event.
For more information, contact Director of UD Criminal Justice Studies program Art Jipson at 937-229-2153.
University of Dayton
Department of Sociology, Anthropology and Social Work
Thursday, November 6, 2008
6:00 - 9:00pm
Sears Recital Hall
300 College Park Avenue
Dayton, OH 45409
FIGHTING MONSTERS WITH RUBBER SWORDS — Robert Rummel-Hudson has a daughter who hears and understands everything but cannot speak. He has faced the challenges of finding a good education for his daughter and a supportive community, as well as the challenge of raising a special needs child. Rummel-Hudson will discuss those challenges and the value of a supportive community at 6:30 p.m. Thursday, Nov. 6, in the Sears Recital Hall in the Jesse Philips Humanities Center. It is free and open to the public. Rummel-Hudson wrote Schuyler's Monster: A Father's Journey with His Wordless Daughter, about his daughter.
"Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal," said Charlotte Moore, author of George & Sam, a book about raising two autistic children. UD's Center for Social Concern, College of Arts and Sciences, criminal justice studies and School of Education and Allied Professions are sponsoring the event.
For more information, contact Director of UD Criminal Justice Studies program Art Jipson at 937-229-2153.
October 25, 2008
How do you like my kid NOW?
Schuyler received her first actual report card today. While she does have a modified curriculum due to her speech output device, this report comes from her mainstream third grade teacher and reflects the mainstream curriculum classwork she's doing.
This is the same little girl about whom some therapists and teachers in her previous schools gently suggested that mainstreaming might not even be possible.
An 89. That's either a B+ or an A, depending on your school's scoring system.
Well, everyone likes being right sometimes. Where Schuyler is concerned, every time we're proven right for believing she was capable of doing great things if only given the right educational tools and setting, I feel ten feet tall.
No, twenty.
This is the same little girl about whom some therapists and teachers in her previous schools gently suggested that mainstreaming might not even be possible.
Student: Rummel-Hudson, Schuyler
Grade: 03
TOTAL LANGUAGE ARTS GRADE:
84
Reading:
88
Language/Composition (Writing, grammar, spelling):
80
Handwriting:
Satisfactory
MATHEMATICS:
86
INTEGRATED CURRICULUM (Science, social studies, health):
96
CUMULATIVE AVERAGE:
89
An 89. That's either a B+ or an A, depending on your school's scoring system.
Well, everyone likes being right sometimes. Where Schuyler is concerned, every time we're proven right for believing she was capable of doing great things if only given the right educational tools and setting, I feel ten feet tall.
No, twenty.
October 24, 2008
October 19, 2008
I'm glad someone finally said it.
"I'm also troubled by, not what Senator McCain says, but what members of the party say. And it is permitted to be said such things as, 'Well, you know that Mr. Obama is a Muslim.' Well, the correct answer is, he is not a Muslim, he's a Christian. He's always been a Christian. But the really right answer is, what if he is? Is there something wrong with being a Muslim in this country? The answer's no, that's not America. Is there something wrong with some seven-year-old Muslim-American kid believing that he or she could be president? Yet, I have heard senior members of my own party drop the suggestion, 'He's a Muslim and he might be associated with terrorists.' This is not the way we should be doing it in America.
"I feel strongly about this particular point because of a picture I saw in a magazine. It was a photo essay about troops who are serving in Iraq and Afghanistan. And one picture at the tail end of this photo essay was of a mother in Arlington Cemetery, and she had her head on the headstone of her son's grave. And as the picture focused in, you could see the writing on the headstone. And it gave his awards--Purple Heart, Bronze Star--showed that he died in Iraq, gave his date of birth, date of death. He was 20 years old. And then, at the very top of the headstone, it didn't have a Christian cross, it didn't have the Star of David, it had crescent and a star of the Islamic faith. And his name was Kareem Rashad Sultan Khan, and he was an American. He was born in New Jersey. He was 14 years old at the time of 9/11, and he waited until he can go serve his country, and he gave his life."
October 17, 2008
How Things Are
Ever since I got back from Nashville, and even shortly before I got there, something has been on my mind, repeating itself like a mantra.
This isn't how it's supposed to be.
When I look at this book I've written, when I see how well it has done and how many people have gotten something from it, when I speak at festivals and conferences and bookstores about it, when I drive the ridiculous car it helped to buy and when I meet writers I admire because of it, when we get to put money away for Schuyler's future and rest a little bit easier, when all these good things happen to me because of this book, it still doesn't change what the book is, or why I wrote it, or what it means that it was ever a story for me to tell at all.
I look at the cover of that book and I see that innocent little girl broken by a bitter god, and for all the great things that have sprung from the book, it nevertheless is still true.
This isn't how it's supposed to be.
I have new friends, mostly because of the book. I have old friends, many of whom have disappeared, some of them also because of the book, others for reasons known only to themselves. I have a new town which isn't me but isn't bad. I'm far from people who mean a great deal to me, but I'm in the place a need to be for Schuyler, and I'm not just okay with that, I'm grateful. Very grateful that such a school and such teachers were here waiting for Schuyler.
But still. This isn't how it's supposed to be.
Most of all, I look at Schuyler. And I know this isn't the way her life was supposed to work out.
We go to parent/teacher conferences like the one we attended earlier today. We spend time just trying to determine how exactly Schuyler will even be able to take the standardized tests that her academic future depends on, tests designed to ensure a certain amount of conformity amongst kids in whose world Schuyler will never entirely exist.
She works so hard, and she succeeds a lot, but she still might not make it, she might not reach the arbitrary standards set by our educational system. Schuyler's life story remains mostly unwritten, and mine is largely written but not in the direction I would have ever chosen. And she's lucky, and I'm lucky, and I know that. I'm a different, better person because of Schuyler and what we've all been through with her, and I don't want to be the person I was before. I don't much care for him, either.
But sometimes, when the nights are unusually quiet like tonight, and when I allow myself to imagine the world the way I thought it could have been, Schuyler's world, the way it should have been, the way she deserves for it to have been, I can't escape the thought.
This isn't how it's supposed to be. And I'm sorry, but sometimes it pisses me off.
This isn't how it's supposed to be.
When I look at this book I've written, when I see how well it has done and how many people have gotten something from it, when I speak at festivals and conferences and bookstores about it, when I drive the ridiculous car it helped to buy and when I meet writers I admire because of it, when we get to put money away for Schuyler's future and rest a little bit easier, when all these good things happen to me because of this book, it still doesn't change what the book is, or why I wrote it, or what it means that it was ever a story for me to tell at all.
I look at the cover of that book and I see that innocent little girl broken by a bitter god, and for all the great things that have sprung from the book, it nevertheless is still true.
This isn't how it's supposed to be.
I have new friends, mostly because of the book. I have old friends, many of whom have disappeared, some of them also because of the book, others for reasons known only to themselves. I have a new town which isn't me but isn't bad. I'm far from people who mean a great deal to me, but I'm in the place a need to be for Schuyler, and I'm not just okay with that, I'm grateful. Very grateful that such a school and such teachers were here waiting for Schuyler.
But still. This isn't how it's supposed to be.
Most of all, I look at Schuyler. And I know this isn't the way her life was supposed to work out.
We go to parent/teacher conferences like the one we attended earlier today. We spend time just trying to determine how exactly Schuyler will even be able to take the standardized tests that her academic future depends on, tests designed to ensure a certain amount of conformity amongst kids in whose world Schuyler will never entirely exist.
She works so hard, and she succeeds a lot, but she still might not make it, she might not reach the arbitrary standards set by our educational system. Schuyler's life story remains mostly unwritten, and mine is largely written but not in the direction I would have ever chosen. And she's lucky, and I'm lucky, and I know that. I'm a different, better person because of Schuyler and what we've all been through with her, and I don't want to be the person I was before. I don't much care for him, either.
But sometimes, when the nights are unusually quiet like tonight, and when I allow myself to imagine the world the way I thought it could have been, Schuyler's world, the way it should have been, the way she deserves for it to have been, I can't escape the thought.
This isn't how it's supposed to be. And I'm sorry, but sometimes it pisses me off.
October 15, 2008
F-Bombing the Senate Chamber
So let me get the best part out of the way. I said "fuck" in the Tennessee State Senate Chamber, with an audience looking on. And I did it on purpose.
I'm not going to try to describe the Southern Festival of Books in Nashville, where I was last week. Suffice it to say, it was like heaven for book nerds. I was one of over two hundred authors attending and presenting, and I have to confess, I did get a little drunk on the golden aura that seemed to project out from the name tag hanging from my neck, the simple white badge that only the authors got. Everyone perked up when I walked by, security guards at the legislative buildings let me walk through while other people got searched, and in general, this simple little white lanyard conferred upon its wearer the very fanciest fancy pants of all.
Simply stated, it was a fantastic weekend. Nashville is extremely cool. I realized Friday night while exploring the downtown area that Nashville really is exactly what Austin has been trying to be for a long time. It has a truly amazing music scene and an acute sense of history, and it also has a real and vibrant literary scene that other cities should envy. The book festival is just one manifestation of that.
I met some amazing writers. There was Laurel Snyder who signed a copy of Up and Down the Scratchy Mountains for Schuyler and whose creepy and perfect Inside the Slidy Diner made me wish Schuyler were still young enough for picture books.
I spent time talking to the fascinating Sallie Lowenstein, whose desire for creative control over her books led her to found Lion Stone Books, an independent publisher whose projects reflect her passion and her creativity. I picked up In the Company of Whispers, which defies description except to say that it is a beautiful book and like nothing else I've ever seen or read.
One of the greatest pleasures was meeting Sigourney Cheek, author of Patient Siggy: Hope and Healing in Cyberspace) and the other writer on my panel discussion. I had no idea what to expect, but she was serious about her work, unbelievably gracious to me, and extremely intelligent. Her perspective on writing and particularly on memoir related to personal struggle gave the presentation a real depth.
You know, right up until I said "fuck" in my reading.
The panel was run by an exceptional moderator, Lacey Galbraith from Swift Book Promotion in Nashville. I got to spend a lot of time with Lacey and Swift Book Promotion president Ginna Foster; they took pity on poor shy me and spent the better part of Saturday evening in my company. I can't tell you how much fun they were, or how much I appreciate their friendship.
The most unexpected and interesting encounter came on Saturday afternoon. With so many presentations going on at the same time, there was a tough choice to make every hour or so. I wanted to go hear Rick Bragg's presentation, but one of my favorite writers for public radio, Sandra Tsing Loh, was speaking at the same time, so I bailed on the gigantic Braggfest (where hundreds of people were lining up half an hour before) and found myself on the front row of Sandra's high energy performance. If you've never seen her and you get the chance, do it. Her new book, Mother on Fire: A True Motherf%#$@ Story About Parenting!, is based on a stage performance she does, and it is incredibly funny and manic. I was exhausted just watching her, although it should be noted that I get tired easily these days. Also, get off my lawn.
Anyway, as I sat there listening, she began talking about the cause that has been driving her of late, one about which she feels passionately and for which very few people are working. It turns out that Sandra Tsing Loh is an enthusiastic advocate for public schools (in her case, the schools of Los Angeles Unified). Considering how much advocacy I've engaged in for public schools (from a special needs perspective), I suddenly felt like my attendance at this presentation was, well, sort of fated.
After each presentation, the authors were escorted to a special area to sign our books, and that's where I got to actually meet Sandra Tsing Loh and tell her my story. This turned out to be easier and less fanboyish than I'd feared, because (insert a little choir singing "ahhhh!") I was wearing the Nametag of Authorial Wonderfulness and my pants were transformed into exquisite fanciness. She immediately treated me like a colleague, and got very excited when I told her my story. She had her publicist run over to the table to buy my book so she could have me sign it, and she asked for my email address so she could contact me later, possibly to talk again when she appears in Dallas in the near future.
"I'm so happy to see another public figure advocating for public schools," she said. "There aren't very many of us, you know."
Public figure. My ego began eating Tokyo at that point.
So yeah, I had a good time.
(Incidentally, about that F-bomb I dropped in the Senate Chamber. Consider that I also managed to get Disney's Wondertime magazine to print the word "asshole"; clearly I'm all about tainting hallowed institutions. But this wasn't just a random, Tourettesian verbal explosion. No, even better, it was part of my reading, from the chapter of Schuyler's Monster in which I share the letter I wrote to Schuyler on Christmas Day of 2004. So don't think I'm just a random vulgarian. Oh no, I was reading from a letter to my five-year-old daughter in which I use the word "fuck". I am Klassy with a K.)
All of this is my long-winded way of expressing my thanks to everyone involved in running the Southern Festival of Books for an amazing festival, particularly to Margie Maddux Newman, Serenity Gerbman and Lacey Cook. I'll have to get busy on my next book, because I want to come back. There are still so many obscenities left with which to foul your legislative halls.
I'm not going to try to describe the Southern Festival of Books in Nashville, where I was last week. Suffice it to say, it was like heaven for book nerds. I was one of over two hundred authors attending and presenting, and I have to confess, I did get a little drunk on the golden aura that seemed to project out from the name tag hanging from my neck, the simple white badge that only the authors got. Everyone perked up when I walked by, security guards at the legislative buildings let me walk through while other people got searched, and in general, this simple little white lanyard conferred upon its wearer the very fanciest fancy pants of all.
Simply stated, it was a fantastic weekend. Nashville is extremely cool. I realized Friday night while exploring the downtown area that Nashville really is exactly what Austin has been trying to be for a long time. It has a truly amazing music scene and an acute sense of history, and it also has a real and vibrant literary scene that other cities should envy. The book festival is just one manifestation of that.
I met some amazing writers. There was Laurel Snyder who signed a copy of Up and Down the Scratchy Mountains for Schuyler and whose creepy and perfect Inside the Slidy Diner made me wish Schuyler were still young enough for picture books.
I spent time talking to the fascinating Sallie Lowenstein, whose desire for creative control over her books led her to found Lion Stone Books, an independent publisher whose projects reflect her passion and her creativity. I picked up In the Company of Whispers, which defies description except to say that it is a beautiful book and like nothing else I've ever seen or read.
One of the greatest pleasures was meeting Sigourney Cheek, author of Patient Siggy: Hope and Healing in Cyberspace) and the other writer on my panel discussion. I had no idea what to expect, but she was serious about her work, unbelievably gracious to me, and extremely intelligent. Her perspective on writing and particularly on memoir related to personal struggle gave the presentation a real depth.
You know, right up until I said "fuck" in my reading.
The panel was run by an exceptional moderator, Lacey Galbraith from Swift Book Promotion in Nashville. I got to spend a lot of time with Lacey and Swift Book Promotion president Ginna Foster; they took pity on poor shy me and spent the better part of Saturday evening in my company. I can't tell you how much fun they were, or how much I appreciate their friendship.
The most unexpected and interesting encounter came on Saturday afternoon. With so many presentations going on at the same time, there was a tough choice to make every hour or so. I wanted to go hear Rick Bragg's presentation, but one of my favorite writers for public radio, Sandra Tsing Loh, was speaking at the same time, so I bailed on the gigantic Braggfest (where hundreds of people were lining up half an hour before) and found myself on the front row of Sandra's high energy performance. If you've never seen her and you get the chance, do it. Her new book, Mother on Fire: A True Motherf%#$@ Story About Parenting!, is based on a stage performance she does, and it is incredibly funny and manic. I was exhausted just watching her, although it should be noted that I get tired easily these days. Also, get off my lawn.
Anyway, as I sat there listening, she began talking about the cause that has been driving her of late, one about which she feels passionately and for which very few people are working. It turns out that Sandra Tsing Loh is an enthusiastic advocate for public schools (in her case, the schools of Los Angeles Unified). Considering how much advocacy I've engaged in for public schools (from a special needs perspective), I suddenly felt like my attendance at this presentation was, well, sort of fated.
After each presentation, the authors were escorted to a special area to sign our books, and that's where I got to actually meet Sandra Tsing Loh and tell her my story. This turned out to be easier and less fanboyish than I'd feared, because (insert a little choir singing "ahhhh!") I was wearing the Nametag of Authorial Wonderfulness and my pants were transformed into exquisite fanciness. She immediately treated me like a colleague, and got very excited when I told her my story. She had her publicist run over to the table to buy my book so she could have me sign it, and she asked for my email address so she could contact me later, possibly to talk again when she appears in Dallas in the near future.
"I'm so happy to see another public figure advocating for public schools," she said. "There aren't very many of us, you know."
Public figure. My ego began eating Tokyo at that point.
So yeah, I had a good time.
(Incidentally, about that F-bomb I dropped in the Senate Chamber. Consider that I also managed to get Disney's Wondertime magazine to print the word "asshole"; clearly I'm all about tainting hallowed institutions. But this wasn't just a random, Tourettesian verbal explosion. No, even better, it was part of my reading, from the chapter of Schuyler's Monster in which I share the letter I wrote to Schuyler on Christmas Day of 2004. So don't think I'm just a random vulgarian. Oh no, I was reading from a letter to my five-year-old daughter in which I use the word "fuck". I am Klassy with a K.)
All of this is my long-winded way of expressing my thanks to everyone involved in running the Southern Festival of Books for an amazing festival, particularly to Margie Maddux Newman, Serenity Gerbman and Lacey Cook. I'll have to get busy on my next book, because I want to come back. There are still so many obscenities left with which to foul your legislative halls.
October 9, 2008
A Very Calm Presence
Just a quick word as I prepare to leave for Nashville tomorrow morning. I checked the Southern Festival of Books schedule and saw that my panel with Sigourney Cheek now has a title:
"A Very Calm Presence" — Two Stories of Family, Friends and Healing
A number of people have already indicated that they're coming. I hope you'll be there, too, if for no other reason than to see how I reconcile "A Very Calm Presence" with Schuyler, my tempestuous, monster-slaying tornado girl.
I had an epiphany about her, by the way. If you'd like to know what Schuyler sounds like when she actually speaks, you should play one of the Sims games. To the uninitiated (and even sometimes to Julie and me), Schuylerese sounds remarkably like Simlish. Unintelligible, but strangely beautiful.
"A Very Calm Presence" — Two Stories of Family, Friends and Healing
A number of people have already indicated that they're coming. I hope you'll be there, too, if for no other reason than to see how I reconcile "A Very Calm Presence" with Schuyler, my tempestuous, monster-slaying tornado girl.
I had an epiphany about her, by the way. If you'd like to know what Schuyler sounds like when she actually speaks, you should play one of the Sims games. To the uninitiated (and even sometimes to Julie and me), Schuylerese sounds remarkably like Simlish. Unintelligible, but strangely beautiful.
October 7, 2008
My Fancy Pants Weekend
I'm getting ready for an event that honestly, I've been looking forward to for a long time. This weekend, I'll be at the Southern Festival of Books in Nashville, participating in a panel on Saturday at noon with Sigourney Cheek, author of Patient Siggy: Hope and Healing in Cyberspace. I've not met Ms. Cheek, and the panel hasn't been assigned a topic, at least as far as I know. (Hopefully it'll dodge the Plucky Little Soldier, Patch Adams thing.) As a result, I'm in the interesting position of preparing to talk about my book without knowing exactly what I'm going to say. To tell the truth, I sort of like it that way. I do some of my best thinking on the fly.
Between now and Saturday, I'm re-reading a book that should prepare me a little for this panel -- mine. I actually haven't read it in a while, so please, no spoilers.
I'm looking forward to this for a lot of reasons beyond free trip to Nashville. (Although, you know, free trip to Nashville!) I've been doing a lot of events, but most of them have been in the capacity of Schuyler's father, who by the way also wrote a book. I'm going to Nashville as an author first and foremost, and I have to say, that's nice. It's easy to forget that I wrote a book. I know that sounds weird, but it's true. Even now, while I'm reading it again, I have these moments of "Holy shit, did I really write all this?" I'm still a little surprised myself.
There are going to be some excellent authors at the festival, including Rick Bragg and Ann Patchett. I'm looking forward to being there with people whose pants are much fancier than my own, and to be able to look at them as something akin to a colleague. A slobbering colleague, perhaps, but I'll take that.
If you're in the area, I hope you'll come by and say hello. There are going to be something like 200 authors represented, all on the apparently fancy grounds of the War Memorial Legislative Plaza. (I don't expect to ever again be able to say "I will be speaking in the Senate Chambers" again in my life, so I'm trying to say it a lot this week.) Best of all, it's free to the public. It looks like a lot of fun.
Hopefully I'll see you there. You know, in the Senate Chambers. Where I'll be speaking. Did I mention that already? I did, okay.
Between now and Saturday, I'm re-reading a book that should prepare me a little for this panel -- mine. I actually haven't read it in a while, so please, no spoilers.
I'm looking forward to this for a lot of reasons beyond free trip to Nashville. (Although, you know, free trip to Nashville!) I've been doing a lot of events, but most of them have been in the capacity of Schuyler's father, who by the way also wrote a book. I'm going to Nashville as an author first and foremost, and I have to say, that's nice. It's easy to forget that I wrote a book. I know that sounds weird, but it's true. Even now, while I'm reading it again, I have these moments of "Holy shit, did I really write all this?" I'm still a little surprised myself.
There are going to be some excellent authors at the festival, including Rick Bragg and Ann Patchett. I'm looking forward to being there with people whose pants are much fancier than my own, and to be able to look at them as something akin to a colleague. A slobbering colleague, perhaps, but I'll take that.
If you're in the area, I hope you'll come by and say hello. There are going to be something like 200 authors represented, all on the apparently fancy grounds of the War Memorial Legislative Plaza. (I don't expect to ever again be able to say "I will be speaking in the Senate Chambers" again in my life, so I'm trying to say it a lot this week.) Best of all, it's free to the public. It looks like a lot of fun.
Hopefully I'll see you there. You know, in the Senate Chambers. Where I'll be speaking. Did I mention that already? I did, okay.
October 3, 2008
It's hard out here for a pimp
So I know I already mentioned my appearance tomorrow, but I just wanted to give one last little burst of pimpy goodness.
Tomorrow I'm signing at Borders in Allen, Texas, which is just up the road from where I live. It is in fact the closest bookstore to where I live, so it's sort of like my own quiet little neighborhood bookstore. Mom and Pop, if they worked for a huge corporation.
There are going to be other authors there that day, including a live radio broadcast by Kim Snider, author of How To Be the Family CFO, presumedly giving financial advise (I wonder if she'll mention suicide?). The hour before me will feature two writers who have written books about Princess Diana. (SPOILER: She dies) One of them, Lady Colin Campbell, has a rather interesting story of her own, but I won't ruin your Wikipedia fun by giving it all away.
Oh, and there's a bounce house. They freak me out, personally; all I can imagine is all the bacteria saying "Wheee!" as they jump from one kid to the next. But that's just me. I have Issues.
If you live in the area, I hope you'll come. This is one of those new, "experimental" Borders stores, with the cool music burning and print on demand stations, and the Watters Creek shopping area that it anchors is really very fancy and pleasant. We go there and walk around a lot, pretending we can afford to buy things. It's all so new that if you look at the satelite photo on Google Maps, all you'll see is a big open construction site. Trust me, there's stuff there now. No need for lawn chairs.
And of course, Schuyler will be in attendance. In a very funky dress, I might add. All the trendiest eight-year-old mute chickies will be wearing it this season, mark my words.
-----
Saturday, October 4, 2008
4:00 pm
Borders Books and Music at Watters Creek (map)
965 West Bethany Dr.
Allen, TX 75013
214.383.9676
Tomorrow I'm signing at Borders in Allen, Texas, which is just up the road from where I live. It is in fact the closest bookstore to where I live, so it's sort of like my own quiet little neighborhood bookstore. Mom and Pop, if they worked for a huge corporation.
There are going to be other authors there that day, including a live radio broadcast by Kim Snider, author of How To Be the Family CFO, presumedly giving financial advise (I wonder if she'll mention suicide?). The hour before me will feature two writers who have written books about Princess Diana. (SPOILER: She dies) One of them, Lady Colin Campbell, has a rather interesting story of her own, but I won't ruin your Wikipedia fun by giving it all away.
Oh, and there's a bounce house. They freak me out, personally; all I can imagine is all the bacteria saying "Wheee!" as they jump from one kid to the next. But that's just me. I have Issues.
If you live in the area, I hope you'll come. This is one of those new, "experimental" Borders stores, with the cool music burning and print on demand stations, and the Watters Creek shopping area that it anchors is really very fancy and pleasant. We go there and walk around a lot, pretending we can afford to buy things. It's all so new that if you look at the satelite photo on Google Maps, all you'll see is a big open construction site. Trust me, there's stuff there now. No need for lawn chairs.
And of course, Schuyler will be in attendance. In a very funky dress, I might add. All the trendiest eight-year-old mute chickies will be wearing it this season, mark my words.
-----
Saturday, October 4, 2008
4:00 pm
Borders Books and Music at Watters Creek (map)
965 West Bethany Dr.
Allen, TX 75013
214.383.9676
October 2, 2008
Monster Family Values
I snuck him into Schuyler's room last night while she slept, and when we woke her up this morning, we asked her if she heard a monster crying. When she saw him sitting there with the other two, she lost her mind. This is how she left them posed when she left for school this morning.
And Baby Monster is apparently a girl. Well, clearly.
Weird and creepy? Or unexpected teaching moment? You decide.
October 1, 2008
Monster Giggle
It's been a rough few weeks for Schuyler.
I mean, let me put that in context, because it's important, I think, to make a distinction here. There was a time in her life when that sentence could have very well been one of foreboding. In the past, a rough time for Schuyler could have been one in which she was back in the hospital for staph surgeries. It could have been one in which she was undergoing tests that freaked her out and hurt her and ultimately led to more questions than answers. And it wasn't that many years ago that a rough patch for Schuyler could have been one in which her teachers in Austin were trying to deny her services or even taking her speech device away from her, muting her and making her feel powerless and weird.
So I'm happy to report that the past couple of weeks have been a challenge for Schuyler for the same reasons that your own neurotypical kids have rough times. I know plenty of broken parents who would give a decade off their lives to have the problems that we've had recently. In a lot of ways, Schuyler's current issues even make me a weird kind of happy.
I told you about the loss/theft/alien-abduction/whatever of Schuyler's glasses. Sure enough, they never reappeared, and she's made do with her much less cool backup pair. The fact that they were taken/mysteriously-vanished/eaten by bears/whatever during her after-school program is just one of a long string of problems we've had with that program. None of them have been serious, not since the summer of '07, known as the "Here's a letter to the district program director explaining what it means to be ADA/IDEA compliant, have a nice day" summer. But still.
When the staff running the program appear to be losing track of kids and their belongings, that's bad for any of the kids. I'm ready to argue, however, that for a nonverbal but socially outgoing and weirdly beautiful (given her father's face) little girl with a fierce resistance to the idea of Stranger Danger and a $7,500 piece of equipment perpetually in tow, those concerns are multiplied. Add to that the fact that one of the staff members offered Schuyler a bag of Doritos (forbidden because of her PMG and its resulting choking danger), RIGHT IN FRONT OF US, and you might be correct in assuming that we've got some concerns, to put it lightly.
Schuyler's performance in school has been rocky, I have to say. I think she's finally settling in, partly as a result, I hope, of the IEP meeting we had recently. Schuyler's in third grade, which is age appropriate for her, but the work load has been stepped up and grades are now being counted for the first time. Standardized tests are being applied, and that means "scary boo" concerns from everyone. If Schuyler's going to keep up, it's going to take a lot of work, and focus, and we went into that meeting expressing our clear expectation of everyone involved in her education. There were some areas that we felt needed to be tweaked and improved, and they seem to have been. Schuyler's new mainstream teacher is young and fresh and happy, and while my McCainesque reaction to that kind of person is usually grouchy and condescending, I have to say that she seems to be on track. Schuyler loves her unconditionally, of course.
So here's where the concerns become little silver linings, even to someone like me who is resistant to taking lemons and turning them into anything but projectiles. The biggest issue for Schuyler to come out of that meeting, and in the occasional note sent home, has been her focus. Not her broken brain, not debilitating seizures, but her attention span. She tends to become distracted easily, and can sometimes be hard to keep on task. It's not her enthusiasm that's at issue; indeed, her sunshiny new mainstream teacher reported that Schuyler frequently raises her hand to answer questions before she actually determines whether or not she knows the answer. She just has a hard time staying on task sometimes.
The other thing we've gotten notes sent home about has been her willful defiance from time to time. And here's where I'm going to be blunt about something that's bugging me a little. We got an email recently explaining how Schuyler was refusing to do what one of her teachers asked her to do, and was being defiant and saying "no" when told to go somewhere, instead just crossing her arms and planting her feet. It was requested that we address this at home.
Another time, we were informed that she was giggling in class, and trying to make another girl laugh, too.
Well, okay. I know it might be in my nature as her father to be defensive on her behalf, although God knows we brought down the hammer when she got home from school. (On the defiance thing, not so much the giggling.) But the thing is, she's eight. She's defiant. Schuyler is praised by her teachers, and by me come to think of it, for her independent spirit and her "take no bullshit" attitude. And I truly love that about her most of the time. When she turns it on Julie and myself, it can be hard to stay positive about her independence. Everyone's happy about her stubborn independence until it gets turned on them. She's like the "loose cannon" character in every cop show on tv.
I guess what I'm trying to say is that I'm not sure that a defiant eight-year-old is really an emergency, email-the-parents-at-work kind of an issue. I think people are afraid to stand up to Schuyler, and that's probably my own fault as much as anyone else's. I suspect I paint a picture of our relationship that sounds very free and easy to you, and in some ways that's exactly right. But Schuyler hears "no" at home a lot, almost a ridiculous number of times every day, and when she says she doesn't want to do something, she hears a variation on "tough shit, do it anyway" an equally impressive number of times.
Most importantly, when she gets shut down, Schuyler almost never throws a fit about it. She never melts down and she very rarely pushes her case beyond the "repeat it a few times and see if the answer changes" phase. She has even given up on getting a "no" from one parent and then asking the other, although I'm sure than maneuver will return. Schuyler is willful and defiant and independent, but she also has an uncanny knack for sizing up the resistance and picking her battles. She's looking to determine her boundaries like any other third grader, and once she knows where they are, she's pretty good about accepting them.
While we're on the topic of notes, a story. When I went to pick her up yesterday, Schuyler had clearly met with some tragedy. Half of her face was red, with angry welts and scratches. She told me that she'd fallen in the grass during recess, and she didn't seem particularly bothered by it. It wasn't really a big deal, aside from the poor timing (school photos tomorrow, book signing on Saturday), but I was annoyed that we didn't receive a note or an email about it. I had to write to her teacher to get details, although in all fairness, there weren't that many to get. The teacher thought that Schuyler would tell us herself, and in fact she did.
Still, in the future, I'd probably rather get a note about injuries than giggling. As a general rule of thumb.
The important thing about all this is that Schuyler's issues these days are rather mundane. Even my issues with her school are Small Stuff; they continue to get the Big Stuff not just right, but dramatically right.
If I could send an email back in time about five years to myself, back when we were stressing over Schuyler's newly identified monster and the potential havoc it might visit on her in the future, and also the anxiety we felt over her abysmal New Haven school situation, 2008 Me would try to convey the hope and the possibilities that stretched before her. I'd tell 2003 Me about the bad things that never came to pass, and about the Big Box of Words, and the teachers and friends in Plano who would change Schuyler's life and put her on a trajectory that we wouldn't have dared to even dream about before.
But if only given one sentence with which to reassure myself, I could do worse than "Dude, her teachers here in 2008? They're worried about giggling..."
I mean, let me put that in context, because it's important, I think, to make a distinction here. There was a time in her life when that sentence could have very well been one of foreboding. In the past, a rough time for Schuyler could have been one in which she was back in the hospital for staph surgeries. It could have been one in which she was undergoing tests that freaked her out and hurt her and ultimately led to more questions than answers. And it wasn't that many years ago that a rough patch for Schuyler could have been one in which her teachers in Austin were trying to deny her services or even taking her speech device away from her, muting her and making her feel powerless and weird.
So I'm happy to report that the past couple of weeks have been a challenge for Schuyler for the same reasons that your own neurotypical kids have rough times. I know plenty of broken parents who would give a decade off their lives to have the problems that we've had recently. In a lot of ways, Schuyler's current issues even make me a weird kind of happy.
I told you about the loss/theft/alien-abduction/whatever of Schuyler's glasses. Sure enough, they never reappeared, and she's made do with her much less cool backup pair. The fact that they were taken/mysteriously-vanished/eaten by bears/whatever during her after-school program is just one of a long string of problems we've had with that program. None of them have been serious, not since the summer of '07, known as the "Here's a letter to the district program director explaining what it means to be ADA/IDEA compliant, have a nice day" summer. But still.
When the staff running the program appear to be losing track of kids and their belongings, that's bad for any of the kids. I'm ready to argue, however, that for a nonverbal but socially outgoing and weirdly beautiful (given her father's face) little girl with a fierce resistance to the idea of Stranger Danger and a $7,500 piece of equipment perpetually in tow, those concerns are multiplied. Add to that the fact that one of the staff members offered Schuyler a bag of Doritos (forbidden because of her PMG and its resulting choking danger), RIGHT IN FRONT OF US, and you might be correct in assuming that we've got some concerns, to put it lightly.
Schuyler's performance in school has been rocky, I have to say. I think she's finally settling in, partly as a result, I hope, of the IEP meeting we had recently. Schuyler's in third grade, which is age appropriate for her, but the work load has been stepped up and grades are now being counted for the first time. Standardized tests are being applied, and that means "scary boo" concerns from everyone. If Schuyler's going to keep up, it's going to take a lot of work, and focus, and we went into that meeting expressing our clear expectation of everyone involved in her education. There were some areas that we felt needed to be tweaked and improved, and they seem to have been. Schuyler's new mainstream teacher is young and fresh and happy, and while my McCainesque reaction to that kind of person is usually grouchy and condescending, I have to say that she seems to be on track. Schuyler loves her unconditionally, of course.
So here's where the concerns become little silver linings, even to someone like me who is resistant to taking lemons and turning them into anything but projectiles. The biggest issue for Schuyler to come out of that meeting, and in the occasional note sent home, has been her focus. Not her broken brain, not debilitating seizures, but her attention span. She tends to become distracted easily, and can sometimes be hard to keep on task. It's not her enthusiasm that's at issue; indeed, her sunshiny new mainstream teacher reported that Schuyler frequently raises her hand to answer questions before she actually determines whether or not she knows the answer. She just has a hard time staying on task sometimes.
The other thing we've gotten notes sent home about has been her willful defiance from time to time. And here's where I'm going to be blunt about something that's bugging me a little. We got an email recently explaining how Schuyler was refusing to do what one of her teachers asked her to do, and was being defiant and saying "no" when told to go somewhere, instead just crossing her arms and planting her feet. It was requested that we address this at home.
Another time, we were informed that she was giggling in class, and trying to make another girl laugh, too.
Well, okay. I know it might be in my nature as her father to be defensive on her behalf, although God knows we brought down the hammer when she got home from school. (On the defiance thing, not so much the giggling.) But the thing is, she's eight. She's defiant. Schuyler is praised by her teachers, and by me come to think of it, for her independent spirit and her "take no bullshit" attitude. And I truly love that about her most of the time. When she turns it on Julie and myself, it can be hard to stay positive about her independence. Everyone's happy about her stubborn independence until it gets turned on them. She's like the "loose cannon" character in every cop show on tv.
I guess what I'm trying to say is that I'm not sure that a defiant eight-year-old is really an emergency, email-the-parents-at-work kind of an issue. I think people are afraid to stand up to Schuyler, and that's probably my own fault as much as anyone else's. I suspect I paint a picture of our relationship that sounds very free and easy to you, and in some ways that's exactly right. But Schuyler hears "no" at home a lot, almost a ridiculous number of times every day, and when she says she doesn't want to do something, she hears a variation on "tough shit, do it anyway" an equally impressive number of times.
Most importantly, when she gets shut down, Schuyler almost never throws a fit about it. She never melts down and she very rarely pushes her case beyond the "repeat it a few times and see if the answer changes" phase. She has even given up on getting a "no" from one parent and then asking the other, although I'm sure than maneuver will return. Schuyler is willful and defiant and independent, but she also has an uncanny knack for sizing up the resistance and picking her battles. She's looking to determine her boundaries like any other third grader, and once she knows where they are, she's pretty good about accepting them.
While we're on the topic of notes, a story. When I went to pick her up yesterday, Schuyler had clearly met with some tragedy. Half of her face was red, with angry welts and scratches. She told me that she'd fallen in the grass during recess, and she didn't seem particularly bothered by it. It wasn't really a big deal, aside from the poor timing (school photos tomorrow, book signing on Saturday), but I was annoyed that we didn't receive a note or an email about it. I had to write to her teacher to get details, although in all fairness, there weren't that many to get. The teacher thought that Schuyler would tell us herself, and in fact she did.
Still, in the future, I'd probably rather get a note about injuries than giggling. As a general rule of thumb.
The important thing about all this is that Schuyler's issues these days are rather mundane. Even my issues with her school are Small Stuff; they continue to get the Big Stuff not just right, but dramatically right.
If I could send an email back in time about five years to myself, back when we were stressing over Schuyler's newly identified monster and the potential havoc it might visit on her in the future, and also the anxiety we felt over her abysmal New Haven school situation, 2008 Me would try to convey the hope and the possibilities that stretched before her. I'd tell 2003 Me about the bad things that never came to pass, and about the Big Box of Words, and the teachers and friends in Plano who would change Schuyler's life and put her on a trajectory that we wouldn't have dared to even dream about before.
But if only given one sentence with which to reassure myself, I could do worse than "Dude, her teachers here in 2008? They're worried about giggling..."
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