Big monsters are bad.
God knows we've met plenty of kids fighting those big monsters. Kids in wheelchairs. Kids with CP whose bodies betray them when they attempt the simplest movements. Kids with autism for whom the world in which they live bears only a passing resemblance to the one that the rest of us occupy. Kids fighting battles with their bodies just to be able to eat, or to live without crippling infections. We've met kids with big, daunting, obvious monsters, and in her own way, trying to communicate the simplest concepts and so often finding frustration, Schuyler has lived with a sizable monster herself.
When she received her diagnosis five and a half years ago, we met polymicrogyria, her big monster. That day, we learned to fear the even bigger one that might be waiting for her. I think we knew on some instinctual level that Schuyler was not mentally retarded, so grand mal seizures were the ugliest monster we feared. There was a ninety percent chance they would develop, we were told, and in rare cases (but how rare can they be, really, when they are a subset of but a thousand cases in the world), those seizures could be lethal monsters.
Big monsters are bad, that's for certain. But the little monsters, the ones so subtle that you're not even sure they're there, they bring their own special anxiety.
It's been a strange week. Nothing really changed, just the falling together of enough puzzle pieces from different sources and perspectives to reveal what seem likely to be tiny monster footprints. Looking back, we realized that if Schuyler really has been having absence seizures, it probably began this summer. But it's hard to say for sure. It's hard to say whether she's having short spells at school where she loses her focus because she's having tiny seizures, or just because her father's disinterest in school turned out to be genetic. It's hard to say with absolute certainty that Schuyler's little fade-outs at home with us are a product of tiny electrical storms in her head, or just the inevitability of her growing boredom where her parents are concerned.
Julie and I have been watching her all week. Just watching, waiting for a glimpse of her tiny maybe-monster. Schuyler was home sick for a couple of days, and Julie found herself unable to stop staring, waiting. Schuyler noticed, too. "What, Mama?" she said irritably. If what I'm reading and hearing about absence seizures is true, she has no idea she's having them. IF she's having them.
Tiny maybe-monsters aren't much fun. They are like the world's most challenging Whack-A-Mole game, where not only can you not hit them, but they move so quickly that you're not even sure they are there.
Tomorrow we see a doctor. Not a specialist, not yet, but just getting Schuyler started with a new general practitioner. Mine, actually. She knows me, and she's read the book and has at least a basic understanding of Schuyler's bigger monster, which is more than any other doctor of hers has ever had at the first appointment. Most of all, I trust her, completely. From there we'll get a neurology referral, and then start down this road.
It might be that there is no tiny monster, and that Schuyler continues to dwell in that sweet spot, the hundred or so polymicrogyrians of the world who live free of seizures. I live between two mental states right now, the one that clings to that ten percent hope and then the one that's ready to take on this next phase. More than anything else right now, we simply want to know which path we're taking. It's been a long time since we were in this answer-seeking limbo. I'd forgotten how much I hate it.
Yesterday I was driving with Schuyler, and I was listening to an opera because I am just that much fun of a father. The opera was in English, and the characters were mentioning "war" frequently. (Again, fun dad.) After asking me what the music was about, Schuyler hit me with one of those Big Questions that kids drop on us like, well, bombs.
"Daddy," she asked, "what is war?"
I gave her the best answer I could think of. I left out the part where she's fighting a war and doesn't even know it.
December 7, 2008
December 4, 2008
Monstrum electricus
In retrospect, it seems almost ridiculous that I, of all people, would allow Schuyler's monster to sneak up on me.
We've been dealing with the issue of Schuyler having focus problems in school ever since the semester began. It's been something we've seen at home as well, where she will phase out and simply not seem to hear us when we say her name. It can be annoying, like the "selective hearing" that most little kids seem to get at some point in their lives, but after a few rocky weeks in school, she figured out her rhythm and started to perform. Her last grade report was all A's. The focus issues continued to come up, but they didn't seem to be seriously affecting her class work, so they became B-List worries.
It wasn't until one of her teachers actually described her moments of scattered focus that something became clear, something that should have been clear from the start, but wasn't. After Julie and I compared notes all day and after going back and doing more reading, and especially after seeing video that it never occurred to me would be available online, we saw it. We're beginning the process of confirming this medically, but today, we think we saw it.
Julie and I now believe that for at least the past six months, Schuyler has probably been experiencing absence seizures.
I'm trying not to beat myself up about this too much. Absence seizures are subtle, after all, and they manifest themselves in different ways, depending on the person. They are also particularly hard to detect in non-verbal subjects, for whom a sudden lapse in conversation is obviously not much of a tell. Watch this video, of a little girl having absence seizures. This video is significant because her absence seizures are almost identical to what we see in Schuyler's little zone-out episodes, particularly in the tiny little movements of her jaw:
As you watch it, ask yourself if you would even notice anything wrong if you didn't know what you were looking for. Absence seizures can be hard to catch even with a healthy, jabbering little kid.
And yet, we should have known better. Ninety percent of polymicrogyria patients develop seizures, most of them between the ages of six and ten. Schuyler turns nine in a few weeks. It's been comforting to think that she was beating the odds again, and it made for a swell line in the speeches I've been giving, but the reality of Schuyler's situation was always there, right in front of our faces. Julie has been preparing emotionally for this day, and so her feelings on the matter are somewhat subdued. Mine you can probably guess.
I suppose that for all my talk, I'd allowed myself to get a little complacent, and a little too hopeful. There's nothing wrong with hope, except when it gets in the way of facing the monster and outsmarting it. Hope can be a positive or a negative force depending on what you do with it, really. Hoping that Schuyler will one day speak is a good thing, for example, even if it's only a remote possibility. But what if that hope led us to put all our efforts into getting her to talk, instead of teaching her sign language and giving her the Big Box of Words? It's the same with the seizures, I suppose, except of course that until the day comes that she has one, there's really nothing to do but be vigilant and prepared to spring into action.
Now that the day may be at hand, the next step is to get Schuyler to a neurologist or an epilepsy specialist and find out if she's actually having them. If she is, then we play it by ear. Seizure meds present complications for PMG patients that can make them an unattractive choice for non-debilitating cases. We'd monitor her seizures, explore whatever medical options were deemed appropriate, and continue to do what we're doing now. We'd work to incorporate her monster into her life, as normal a life as we can give her.
The monster already has a place at the table. That doesn't change. It still doesn't get to eat the fucking table.
While most people with PMG progress from absence seizures to more serious and sometimes life-threatening forms, it is entirely possible that Schuyler could develop something called absence epilepsy, in which her seizures never progress beyond what she may be experiencing now. Even if she develops more serious seizures, the fact that they've developed this slowly and incrementally might mean they won't be life-threatening or an excessive obstacle in her life. She might not be able to get a driver's license, and a career as a fighter pilot might be unrealistic. I suspect she'd be able to live with that.
This has been our fear all along. For five years, the specter of seizures has haunted us. And while this might sound bogus to non-parents, those of you with kids will know exactly what I mean when I say that Julie and I have come to trust our instincts with Schuyler's condition and what it means for her, and we trust it completely. When Yale diagnosed her with PDD-NOS, an autism spectrum disorder, it was our instinctual knowledge of Schuyler and our intuition that told us it was wrong. When we were fighting for her Big Box of Words, we knew on a gut level that she would excel on a speech device.
I've learned to listen to my heart where Schuyler is concerned, and while we won't stop until we have a doctor's evidence, my heart is telling me to get ready. My heart tells me a storm is coming.
In the epilogue of Schuyler's Monster, I address the possibility that Schuyler could one day develop seizures.
If that day is here, it remains true that Schuyler is ready in ways that I'm not, and never will be. But when I lose my way, as I often do, it's still Schuyler who helps me find me way. She's shown me how to do this all along, and I suspect that's not going to change.
As much as I'd like to make it mine, it's still her monster, after all. And she's got its number.
We've been dealing with the issue of Schuyler having focus problems in school ever since the semester began. It's been something we've seen at home as well, where she will phase out and simply not seem to hear us when we say her name. It can be annoying, like the "selective hearing" that most little kids seem to get at some point in their lives, but after a few rocky weeks in school, she figured out her rhythm and started to perform. Her last grade report was all A's. The focus issues continued to come up, but they didn't seem to be seriously affecting her class work, so they became B-List worries.
It wasn't until one of her teachers actually described her moments of scattered focus that something became clear, something that should have been clear from the start, but wasn't. After Julie and I compared notes all day and after going back and doing more reading, and especially after seeing video that it never occurred to me would be available online, we saw it. We're beginning the process of confirming this medically, but today, we think we saw it.
Julie and I now believe that for at least the past six months, Schuyler has probably been experiencing absence seizures.
I'm trying not to beat myself up about this too much. Absence seizures are subtle, after all, and they manifest themselves in different ways, depending on the person. They are also particularly hard to detect in non-verbal subjects, for whom a sudden lapse in conversation is obviously not much of a tell. Watch this video, of a little girl having absence seizures. This video is significant because her absence seizures are almost identical to what we see in Schuyler's little zone-out episodes, particularly in the tiny little movements of her jaw:
As you watch it, ask yourself if you would even notice anything wrong if you didn't know what you were looking for. Absence seizures can be hard to catch even with a healthy, jabbering little kid.
And yet, we should have known better. Ninety percent of polymicrogyria patients develop seizures, most of them between the ages of six and ten. Schuyler turns nine in a few weeks. It's been comforting to think that she was beating the odds again, and it made for a swell line in the speeches I've been giving, but the reality of Schuyler's situation was always there, right in front of our faces. Julie has been preparing emotionally for this day, and so her feelings on the matter are somewhat subdued. Mine you can probably guess.
I suppose that for all my talk, I'd allowed myself to get a little complacent, and a little too hopeful. There's nothing wrong with hope, except when it gets in the way of facing the monster and outsmarting it. Hope can be a positive or a negative force depending on what you do with it, really. Hoping that Schuyler will one day speak is a good thing, for example, even if it's only a remote possibility. But what if that hope led us to put all our efforts into getting her to talk, instead of teaching her sign language and giving her the Big Box of Words? It's the same with the seizures, I suppose, except of course that until the day comes that she has one, there's really nothing to do but be vigilant and prepared to spring into action.
Now that the day may be at hand, the next step is to get Schuyler to a neurologist or an epilepsy specialist and find out if she's actually having them. If she is, then we play it by ear. Seizure meds present complications for PMG patients that can make them an unattractive choice for non-debilitating cases. We'd monitor her seizures, explore whatever medical options were deemed appropriate, and continue to do what we're doing now. We'd work to incorporate her monster into her life, as normal a life as we can give her.
The monster already has a place at the table. That doesn't change. It still doesn't get to eat the fucking table.
While most people with PMG progress from absence seizures to more serious and sometimes life-threatening forms, it is entirely possible that Schuyler could develop something called absence epilepsy, in which her seizures never progress beyond what she may be experiencing now. Even if she develops more serious seizures, the fact that they've developed this slowly and incrementally might mean they won't be life-threatening or an excessive obstacle in her life. She might not be able to get a driver's license, and a career as a fighter pilot might be unrealistic. I suspect she'd be able to live with that.
This has been our fear all along. For five years, the specter of seizures has haunted us. And while this might sound bogus to non-parents, those of you with kids will know exactly what I mean when I say that Julie and I have come to trust our instincts with Schuyler's condition and what it means for her, and we trust it completely. When Yale diagnosed her with PDD-NOS, an autism spectrum disorder, it was our instinctual knowledge of Schuyler and our intuition that told us it was wrong. When we were fighting for her Big Box of Words, we knew on a gut level that she would excel on a speech device.
I've learned to listen to my heart where Schuyler is concerned, and while we won't stop until we have a doctor's evidence, my heart is telling me to get ready. My heart tells me a storm is coming.
In the epilogue of Schuyler's Monster, I address the possibility that Schuyler could one day develop seizures.
The future for Schuyler is uncertain. Our most dreaded fear, the seizures that statistically seem almost certain to come, have yet to manifest. It hangs over us like the sword of Damocles, but sometimes I forget that those head storms might be waiting to ambush her at all. Then I remember and the fear settles back in. That black lump reappears in my chest when I imagine her having grand mal seizures. When I can step away from my fear, however, I also know that even if they do come, she’ll endure and adapt and keep going, powered by an unstoppable will that she possesses and I do not.
If that day is here, it remains true that Schuyler is ready in ways that I'm not, and never will be. But when I lose my way, as I often do, it's still Schuyler who helps me find me way. She's shown me how to do this all along, and I suspect that's not going to change.
As much as I'd like to make it mine, it's still her monster, after all. And she's got its number.
November 26, 2008
The Legion of Monster Slayers
The last time Schuyler visited Chicago, almost four years ago, we were taking her to see Dr. William Dobyns, the geneticist at the University of Chicago who had originally diagnosed her polymicrogyria. We went to see him in the hopes of getting some answers, and maybe a few possibilities, but what we got instead were some necessary but hard truths. We arrived in Chicago in January of 2005 in desperation, and we left in heartbreak.
Last week, Schuyler returned to Chicago in triumph.
The three of us travelled to Chicago for the American Speech Language Hearing Association's 2008 conference, as the special guests of the Prentke Romich Company, makers of Schuyler's Big Box of Words. PRC has been amazing to Schuyler, they've opened up her world in ways that we can only now begin to appreciate. It's not just Schuyler, but thousands of kids and adults who suddenly have a voice, thanks to this company and its commitment to a philosophy of giving users not just words, but language. When I wrote Schuyler's Monster, one of the things I had the opportunity to do was to stand up for all those broken kids who suddenly found voices and thank the people who made it possible.
Last week, we got to meet the people behind the Box. Schuyler got to meet the makers of her gentle miracle.
It's easy to be impressed by the enormity of the ASHA conference. I was told that thirty thousand people were in attendence. This is the exhibitors' hall, which you can see is huge and filled with booths, each representing a separate vision for helping someone. It really is impressive on a large scale. This is the Village made real.
But something happens when you actually get down onto that floor and start looking at the products being promoted. That's when ASHA becomes truly impressive, when you start to see the innovations that exist entirely to help people in need, mostly children, and when you meet the people behind those innovations.
I had the extreme honor of meeting Bruce Baker, who developed Semantic Compaction (or Minspeak) back in the 1980s. Minspeak is currently used by around 80,000 people worldwide. Its principles inform a number of communication techniques, including Unity, the language that drives Schuyler's Big Box of Words. In meeting Bruce, Schuyler was able to shake hands with the man who is literally responsible for giving her words. The fact that he reacted to Schuyler as if meeting her was a singular honor of his own speaks to the character and commitment of this man. I found a quote by Bruce just now that says it all.
"The most rewarding aspect of my work is getting to know people with complex disabilities who, though unable to talk, want to participate in life to its fullest." Bruce has given companies like Prentke Romich the tools to do just that.
With Richard Ellenson
In a speech I gave over the summer, I talked about how those of us who are parents of broken children have been ambushed by their monsters. We've become warriors for our kids because we were chosen to do so, by Chance or Fate or the bully God, and we need the doctors and the teachers and the speech-language pathologists who have chosen to properly arm themselves and go into battle with those monsters. Plenty of people can attest to the fact that I was perfectly happy being a selfish ass before Schuyler was born. I've always been humbled by the thought of those people who saw a need in society and stepped up to do something about it. I didn't choose this life; they did.
But it's not so simple. The truth is that most of these people, many of whom have become heroes of mine, have come to the battle with their own casualties and their own life lessons. They were chosen, too, and in being chosen, they've changed the world.
One gentleman whom I have wanted to meet for a long time showed up at the PRC booth late in the afternoon. Blink Twice CEO and President Richard Ellenson was a successful ad executive whose son Thomas was left with severe verbal limitations due to cerebral palsy. When traditional augmentative speech devices didn't work for his son, Richard stepped up and developed one that did, focusing on ways to communicate quickly and effectively.
The result was the Tango, and I've been extremely impressed with the work Richard has done. Despite her enthusiasm for the Tango when she got a chance to play with it, Schuyler's needs aren't really appropriate for this device; she's thriving on the language-building capabilities of the PRC Vantage. But I recognize very clearly that there are design and philosophical aspects of the Tango that are revolutionary, although like most great ideas that change the world, they seems obvious once you see them.
The Tango doesn't look or feel like an assistive device for a child with a disability. It uses natural-sounding language (and some very high tech magic to turn adult voices into children's) and kid-friendly graphics. More importantly, in a world where Schuyler and her friends are familiar with iPods and game controllers and the Wii, the Tango melds smoothly into their lives, not as a medical device but as part of their digital world. From a design standpoint, the Tango is just one more crucial and cool device for these plugged-in kids to recharge at the end of the day.
I talked to Richard about what I thought was the brilliance of the Tango. "If you walk around this hall, you'll see a lot of impressive and wonderful innovation," he said. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"
I love Richard because he brought his specific talents as an advertising innovator to bear on the problem that his son presented, and in doing so he made a difference. Everywhere I turned, I met people doing the same thing, for the same reasons. They were taking their life skills and unique talents and they were turning them into weapons against the monsters.
Including me, I guess, in my own small way.
When your life finds a sense of mission, it's humbling, and it's energizing. Mostly, though, it just makes you roll up your sleeves and get busy.
With PRC's Sarah Wilds
Easily, the most gratifying part of the experience for us was the chance to meet and work with the amazing people at Prentke Romich. For the past three and a half years, Schuyler's life has been changed and her horizons exploded by a device called the Vantage Plus. It's her Big Box of Words, and PRC makes it. When a company has such an astonishing impact on the life of someone you love, it can be a surprise to discover the humanity behind that company.
Prentke Romich has been very enthusiastic about promoting Schuyler's story, and while I recognize the benefit that they derive from her story and the exposure that the book has given to their cause, the fact remains that it is a cause, and one to which that we are thrilled to be able to contribute. When we met and got to know the people of the company, it became clear that the work that they do is their mission, and the passion that goes into that work is fired by stories like Schuyler's, stories that show how much of a difference they are making in the world. When they met Schuyler, their pride in her accomplishments was palpable. I know just how they felt.
Our gratitude goes out to our new friends Bob Nemens and Cherie Weaver from PRC's marketing department, and the rest of the PRC crew in Chicago, all of whom Schuyler fell in love with, as she tends to do with people of quality. Thanks to Trudi Blair, Judith Meyer, Angie Neveadomi, Sarah Wilds, Margaret Perkins (sorry once again for appropriating your name in my book) and Julie Packer for everything you did for us. Sarah and Julie P. in particular were subject to Schuyler's "I'm upgrading from my smelly old parents" affections. How sad for her that at the end of the day, Schuyler is always stuck with Julie and me.
Finally, I want to say what a pleasure it was to meet David Moffatt, President of PRC. That's a daunting thought, meeting the president of the company, but Schuyler saw right through to his big heart, and decided he was her new best friend in a hurry. David was incredibly generous for bringing us to Chicago, and was a gracious host to us while we were there. Meeting him and watching him with Schuyler, it became clear why he does what he does. Well, that's true of everyone at PRC.
Bob put together this little video to send to PRC people. I think the thing to notice is that while I'm being a big Chatty Cathy doll, Schuyler is serious and focused. She signs books like a professional, and is polite and cool. She appears to be taking care of business.
This was an interesting trip because while I was in familiar territory, it gave Schuyler and Julie the opportunity to take on very public roles. Schuyler was a champion, signing every single book that I signed (over a hundred in about two hours, I believe) and charming everyone she met. She spent a lot of time exploring different PRC devices, particularly the ECO-14 and the Vantage Lite, and seemed to take her role very seriously. She had all day Saturday to run around Chicago, gawking at the Bean and stalking dinosaurs at the Field Museum, but Friday was all business. When people ask how Schuyler is dealing with all this book business, I can tell them that she takes it seriously, and she is proud of the work we've done. The work we've done, and that we continue to do.
The conference was a new experience for Julie. From the very beginning, she has chosen to keep a low profile, both in my online writing and, to a lesser degree, in the book itself. I'm not sure I have the talent or the ability to tell Julie's story, which is very different from mine, so I've certainly been okay with her decision to lay low. But the thing that seems to escape some people (including the charmer at the conference who asked her how it felt to be "eclipsed") is that Julie is an incredible mother to Schuyler, and is every bit as involved in the decisions towards her care as I am. We play good cop/bad cop a lot, but we tend to trade roles and keep everyone guessing.
Julie's fantastic in whatever role she takes on. While I present a very public face and build an extremely visible platform from which to advocate for Schuyler and her broken brethren, Julie quietly but brilliantly does her work. Her work is God's work, really, regardless of whether or not he actually bothers to do it himself. In Schuyler's life, God is like a crazy uncle who might show up at Thanksgiving drunk and belligerent, or not at all. For Schuyler, God is optional. She has Julie, and that's enough.
At ASHA, Julie suddenly found herself presenting a public face, one that she'd really never been asked to show before now. I'm proud to say that she stepped up and was brilliant. She was articulate and informed, and she expressed the hardships and the victories of her life as Schuyler's mother with eloquence and clarity. I've never been prouder of her, or of Schuyler.
Team Rummel-Hudson was on last week. We get it right sometimes.
The design innovations I was talking about earlier in regards to Richard Ellenson are also reflected in PRC's newest generation of devices. Putting Schuyler in front of these machines was perhaps the most personally gratifying part of the trip. She has reached the point where she dives into the technology behind these devices without hesitation, and more importantly, she intuitively gets how to use them.
We came to an important decision at ASHA, after watching Schuyler explore two different and amazing devices. After exploring some funding possibilities that didn't exist four years ago, Julie and I have decided to attempt to move Schuyler up to the next generation of PRC device, in this case the Vantage Lite. In a lot of ways, it's not terribly different from her current device, but it has some new features and a new design that makes it easier to integrate into her daily life. PRC has paid attention to what its users need, particularly their younger ones, and it has created a device that looks and feels less like a speech prosthesis and more like a digital enhancement to her world.
And it comes in pink. Lord help us all...
Last week, Schuyler returned to Chicago in triumph.
The three of us travelled to Chicago for the American Speech Language Hearing Association's 2008 conference, as the special guests of the Prentke Romich Company, makers of Schuyler's Big Box of Words. PRC has been amazing to Schuyler, they've opened up her world in ways that we can only now begin to appreciate. It's not just Schuyler, but thousands of kids and adults who suddenly have a voice, thanks to this company and its commitment to a philosophy of giving users not just words, but language. When I wrote Schuyler's Monster, one of the things I had the opportunity to do was to stand up for all those broken kids who suddenly found voices and thank the people who made it possible.
Last week, we got to meet the people behind the Box. Schuyler got to meet the makers of her gentle miracle.
It's easy to be impressed by the enormity of the ASHA conference. I was told that thirty thousand people were in attendence. This is the exhibitors' hall, which you can see is huge and filled with booths, each representing a separate vision for helping someone. It really is impressive on a large scale. This is the Village made real.But something happens when you actually get down onto that floor and start looking at the products being promoted. That's when ASHA becomes truly impressive, when you start to see the innovations that exist entirely to help people in need, mostly children, and when you meet the people behind those innovations.
I had the extreme honor of meeting Bruce Baker, who developed Semantic Compaction (or Minspeak) back in the 1980s. Minspeak is currently used by around 80,000 people worldwide. Its principles inform a number of communication techniques, including Unity, the language that drives Schuyler's Big Box of Words. In meeting Bruce, Schuyler was able to shake hands with the man who is literally responsible for giving her words. The fact that he reacted to Schuyler as if meeting her was a singular honor of his own speaks to the character and commitment of this man. I found a quote by Bruce just now that says it all.
"The most rewarding aspect of my work is getting to know people with complex disabilities who, though unable to talk, want to participate in life to its fullest." Bruce has given companies like Prentke Romich the tools to do just that.
In a speech I gave over the summer, I talked about how those of us who are parents of broken children have been ambushed by their monsters. We've become warriors for our kids because we were chosen to do so, by Chance or Fate or the bully God, and we need the doctors and the teachers and the speech-language pathologists who have chosen to properly arm themselves and go into battle with those monsters. Plenty of people can attest to the fact that I was perfectly happy being a selfish ass before Schuyler was born. I've always been humbled by the thought of those people who saw a need in society and stepped up to do something about it. I didn't choose this life; they did.
But it's not so simple. The truth is that most of these people, many of whom have become heroes of mine, have come to the battle with their own casualties and their own life lessons. They were chosen, too, and in being chosen, they've changed the world.
One gentleman whom I have wanted to meet for a long time showed up at the PRC booth late in the afternoon. Blink Twice CEO and President Richard Ellenson was a successful ad executive whose son Thomas was left with severe verbal limitations due to cerebral palsy. When traditional augmentative speech devices didn't work for his son, Richard stepped up and developed one that did, focusing on ways to communicate quickly and effectively.
The result was the Tango, and I've been extremely impressed with the work Richard has done. Despite her enthusiasm for the Tango when she got a chance to play with it, Schuyler's needs aren't really appropriate for this device; she's thriving on the language-building capabilities of the PRC Vantage. But I recognize very clearly that there are design and philosophical aspects of the Tango that are revolutionary, although like most great ideas that change the world, they seems obvious once you see them.
The Tango doesn't look or feel like an assistive device for a child with a disability. It uses natural-sounding language (and some very high tech magic to turn adult voices into children's) and kid-friendly graphics. More importantly, in a world where Schuyler and her friends are familiar with iPods and game controllers and the Wii, the Tango melds smoothly into their lives, not as a medical device but as part of their digital world. From a design standpoint, the Tango is just one more crucial and cool device for these plugged-in kids to recharge at the end of the day.
I talked to Richard about what I thought was the brilliance of the Tango. "If you walk around this hall, you'll see a lot of impressive and wonderful innovation," he said. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"
I love Richard because he brought his specific talents as an advertising innovator to bear on the problem that his son presented, and in doing so he made a difference. Everywhere I turned, I met people doing the same thing, for the same reasons. They were taking their life skills and unique talents and they were turning them into weapons against the monsters.
Including me, I guess, in my own small way.
When your life finds a sense of mission, it's humbling, and it's energizing. Mostly, though, it just makes you roll up your sleeves and get busy.
Easily, the most gratifying part of the experience for us was the chance to meet and work with the amazing people at Prentke Romich. For the past three and a half years, Schuyler's life has been changed and her horizons exploded by a device called the Vantage Plus. It's her Big Box of Words, and PRC makes it. When a company has such an astonishing impact on the life of someone you love, it can be a surprise to discover the humanity behind that company.
Prentke Romich has been very enthusiastic about promoting Schuyler's story, and while I recognize the benefit that they derive from her story and the exposure that the book has given to their cause, the fact remains that it is a cause, and one to which that we are thrilled to be able to contribute. When we met and got to know the people of the company, it became clear that the work that they do is their mission, and the passion that goes into that work is fired by stories like Schuyler's, stories that show how much of a difference they are making in the world. When they met Schuyler, their pride in her accomplishments was palpable. I know just how they felt.
Our gratitude goes out to our new friends Bob Nemens and Cherie Weaver from PRC's marketing department, and the rest of the PRC crew in Chicago, all of whom Schuyler fell in love with, as she tends to do with people of quality. Thanks to Trudi Blair, Judith Meyer, Angie Neveadomi, Sarah Wilds, Margaret Perkins (sorry once again for appropriating your name in my book) and Julie Packer for everything you did for us. Sarah and Julie P. in particular were subject to Schuyler's "I'm upgrading from my smelly old parents" affections. How sad for her that at the end of the day, Schuyler is always stuck with Julie and me.
Finally, I want to say what a pleasure it was to meet David Moffatt, President of PRC. That's a daunting thought, meeting the president of the company, but Schuyler saw right through to his big heart, and decided he was her new best friend in a hurry. David was incredibly generous for bringing us to Chicago, and was a gracious host to us while we were there. Meeting him and watching him with Schuyler, it became clear why he does what he does. Well, that's true of everyone at PRC.
Bob put together this little video to send to PRC people. I think the thing to notice is that while I'm being a big Chatty Cathy doll, Schuyler is serious and focused. She signs books like a professional, and is polite and cool. She appears to be taking care of business.
This was an interesting trip because while I was in familiar territory, it gave Schuyler and Julie the opportunity to take on very public roles. Schuyler was a champion, signing every single book that I signed (over a hundred in about two hours, I believe) and charming everyone she met. She spent a lot of time exploring different PRC devices, particularly the ECO-14 and the Vantage Lite, and seemed to take her role very seriously. She had all day Saturday to run around Chicago, gawking at the Bean and stalking dinosaurs at the Field Museum, but Friday was all business. When people ask how Schuyler is dealing with all this book business, I can tell them that she takes it seriously, and she is proud of the work we've done. The work we've done, and that we continue to do.
The conference was a new experience for Julie. From the very beginning, she has chosen to keep a low profile, both in my online writing and, to a lesser degree, in the book itself. I'm not sure I have the talent or the ability to tell Julie's story, which is very different from mine, so I've certainly been okay with her decision to lay low. But the thing that seems to escape some people (including the charmer at the conference who asked her how it felt to be "eclipsed") is that Julie is an incredible mother to Schuyler, and is every bit as involved in the decisions towards her care as I am. We play good cop/bad cop a lot, but we tend to trade roles and keep everyone guessing.
Julie's fantastic in whatever role she takes on. While I present a very public face and build an extremely visible platform from which to advocate for Schuyler and her broken brethren, Julie quietly but brilliantly does her work. Her work is God's work, really, regardless of whether or not he actually bothers to do it himself. In Schuyler's life, God is like a crazy uncle who might show up at Thanksgiving drunk and belligerent, or not at all. For Schuyler, God is optional. She has Julie, and that's enough.
At ASHA, Julie suddenly found herself presenting a public face, one that she'd really never been asked to show before now. I'm proud to say that she stepped up and was brilliant. She was articulate and informed, and she expressed the hardships and the victories of her life as Schuyler's mother with eloquence and clarity. I've never been prouder of her, or of Schuyler.
Team Rummel-Hudson was on last week. We get it right sometimes.
The design innovations I was talking about earlier in regards to Richard Ellenson are also reflected in PRC's newest generation of devices. Putting Schuyler in front of these machines was perhaps the most personally gratifying part of the trip. She has reached the point where she dives into the technology behind these devices without hesitation, and more importantly, she intuitively gets how to use them.We came to an important decision at ASHA, after watching Schuyler explore two different and amazing devices. After exploring some funding possibilities that didn't exist four years ago, Julie and I have decided to attempt to move Schuyler up to the next generation of PRC device, in this case the Vantage Lite. In a lot of ways, it's not terribly different from her current device, but it has some new features and a new design that makes it easier to integrate into her daily life. PRC has paid attention to what its users need, particularly their younger ones, and it has created a device that looks and feels less like a speech prosthesis and more like a digital enhancement to her world.
And it comes in pink. Lord help us all...
November 17, 2008
Weekend at Burny's
I wanted to tell you about a fun party I attended in Southern California over the weekend, and I shall, but it is probably worth mentioning at the outset that during the duration of my stay in Orange County, the Apocalypse was raging on a hillside directly across from the one where I was staying.
So yeah. Apparently in California, stuff burns up.
We first noticed the Corona fire across the way from us on Saturday morning, and as the day wore on, the whole hill was engulfed. It closed highways, which kept many people away from the party, and as we watched the local news all day, we saw just how freaky and unreal the whole thing was. The fire was jumping across the highway. People were abandoning their cars. Trees were, well, they were exploding. I had to hear that from two different sources before I'd believe it. Exploding trees. I'm no scientist, but if you've got exploding trees, that might just account for your wildfire problem. I mean, it's probably worth checking out, at least.
The party itself was a lot of fun. It's an annual holiday shindig (called, appropriately enough, "Shindig") thrown by a group of people who have been friends for years, and one of whom was swell enough to invite me. I've been close friends with Monique for a long time, so it was nice to see her again in real, actual molecular form. (She recently helped me out tremendously by contributing something quite significant and very cool to the paperback edition of my book, which you will have to buy and read if you want to know more, plugga plugga plugga...)
Anyway, it was a fun party, the details of which I won't bore you with. I got to meet some people I'd only known online, made some new friends (which is always a little difficult for me, shy little bunny that I am), and most importantly buried the hatchet with someone with whom I should have reconciled years ago. I became quite blissfully impaired with strangely few consequences the following morning (aside from the wrinkles in the clothes I slept in, which I don't believe I've done since the blurry days of college), I got to dress fancy (although I'm still not entirely convinced that the outfit I chose for the "black and white" theme didn't make me resemble the love child of Johnny Cash and a clown-for-hire), and received (via the blind gift exchange) a bottle of local brew and a combination bottle opener/wooden dildo.
All that, plus the End of Days. Some people know how to throw a shindig.
So yeah. Apparently in California, stuff burns up.
We first noticed the Corona fire across the way from us on Saturday morning, and as the day wore on, the whole hill was engulfed. It closed highways, which kept many people away from the party, and as we watched the local news all day, we saw just how freaky and unreal the whole thing was. The fire was jumping across the highway. People were abandoning their cars. Trees were, well, they were exploding. I had to hear that from two different sources before I'd believe it. Exploding trees. I'm no scientist, but if you've got exploding trees, that might just account for your wildfire problem. I mean, it's probably worth checking out, at least.
The party itself was a lot of fun. It's an annual holiday shindig (called, appropriately enough, "Shindig") thrown by a group of people who have been friends for years, and one of whom was swell enough to invite me. I've been close friends with Monique for a long time, so it was nice to see her again in real, actual molecular form. (She recently helped me out tremendously by contributing something quite significant and very cool to the paperback edition of my book, which you will have to buy and read if you want to know more, plugga plugga plugga...)
Anyway, it was a fun party, the details of which I won't bore you with. I got to meet some people I'd only known online, made some new friends (which is always a little difficult for me, shy little bunny that I am), and most importantly buried the hatchet with someone with whom I should have reconciled years ago. I became quite blissfully impaired with strangely few consequences the following morning (aside from the wrinkles in the clothes I slept in, which I don't believe I've done since the blurry days of college), I got to dress fancy (although I'm still not entirely convinced that the outfit I chose for the "black and white" theme didn't make me resemble the love child of Johnny Cash and a clown-for-hire), and received (via the blind gift exchange) a bottle of local brew and a combination bottle opener/wooden dildo.
All that, plus the End of Days. Some people know how to throw a shindig.
November 14, 2008
Schuyler's next excellent adventure
(PRC press release)
PRC to Host Schuyler’s Monster Author Robert Rummel-Hudson in Booth #1031 at 2008 ASHA Convention
100 Free Copies of Schuyler’s Monster, A Father’s Journey with His Wordless Daughter Offered to ASHA Conference Attendees
-----
Wooster, OH, November 17, 2008: Prentke Romich Company (PRC), the worldwide leader in alternative and augmentative communication (AAC) language systems and technology, invites ASHA attendees to meet author Robert Rummel-Hudson in Booth #1031 on Friday, November 21, and to enter PRC’s drawing for a free copy of his 2008 book, Schuyler’s Monster, A Father’s Journey with His Wordless Daughter.
In the acclaimed memoir, Rummel-Hudson shares the story of his daughter Schuyler, now eight years old, who was born with a rare neurological brain disorder that prevents her from being able to speak. Using PRC’s Vantage™ Plus speech-output device, the high-spirited youngster is now able to communicate her thoughts and feelings at home and at school.
PRC will be giving away 100 copies of the best-selling book in a random drawing held Friday, November 21. ASHA attendees can enter the drawing by visiting PRC in Booth #1031 on Thursday, November 20, and completing an entry form. Rummel-Hudson will sign books on Friday between 10 am – noon and 3-5 pm. ASHA conference attendees can enter to receive a copy at the conference or are welcome to bring their own copy for the author to sign.
Visitors to the PRC booth also will see the newest of PRC’s AAC devices, Vantage™ Lite, a dedicated device designed for AAC beginners and those ready to advance toward fully independent augmented communication.
The second in PRC’s popular new line of “Lite” devices, Vantage Lite offers the same powerful language and communication features of PRC’s classic Vantage™ Plus but adds an array of hardware and software innovations, including:
About PRC
A 100% employee-owned company founded in 1966 and headquartered in Wooster, OH, PRC is a global leader in the development and manufacture of augmentative communication devices, computer access products, and other assistive technology for people with severe disabilities.
In addition to its powerful communication devices – ECO™-14, Vanguard™, Vantage™, SpringBoard™, and the new SpringBoard™ Lite and Vantage ™ Lite – PRC also provides a wide array of high-quality teaching and implementation tools, therapy materials, curriculum sequences, funding assistance, and training to speech-language pathologists, special educators, and the families of AAC communicators.
You can learn more about the book, Schuyler’s Monster, by visiting www.schuylersmonster.com. Learn more about the author by visiting his blog at www.schuylersmonsterblog.com.
For more information on PRC products and services, go to www.prentrom.com or call (800) 262-1984.
PRC to Host Schuyler’s Monster Author Robert Rummel-Hudson in Booth #1031 at 2008 ASHA Convention
100 Free Copies of Schuyler’s Monster, A Father’s Journey with His Wordless Daughter Offered to ASHA Conference Attendees
-----
Wooster, OH, November 17, 2008: Prentke Romich Company (PRC), the worldwide leader in alternative and augmentative communication (AAC) language systems and technology, invites ASHA attendees to meet author Robert Rummel-Hudson in Booth #1031 on Friday, November 21, and to enter PRC’s drawing for a free copy of his 2008 book, Schuyler’s Monster, A Father’s Journey with His Wordless Daughter.
In the acclaimed memoir, Rummel-Hudson shares the story of his daughter Schuyler, now eight years old, who was born with a rare neurological brain disorder that prevents her from being able to speak. Using PRC’s Vantage™ Plus speech-output device, the high-spirited youngster is now able to communicate her thoughts and feelings at home and at school.
PRC will be giving away 100 copies of the best-selling book in a random drawing held Friday, November 21. ASHA attendees can enter the drawing by visiting PRC in Booth #1031 on Thursday, November 20, and completing an entry form. Rummel-Hudson will sign books on Friday between 10 am – noon and 3-5 pm. ASHA conference attendees can enter to receive a copy at the conference or are welcome to bring their own copy for the author to sign.
Visitors to the PRC booth also will see the newest of PRC’s AAC devices, Vantage™ Lite, a dedicated device designed for AAC beginners and those ready to advance toward fully independent augmented communication.
The second in PRC’s popular new line of “Lite” devices, Vantage Lite offers the same powerful language and communication features of PRC’s classic Vantage™ Plus but adds an array of hardware and software innovations, including:
- Compact case with built-in handle for greater portability;
- “High Brightness” display with LED backlight and wide viewing angle;
- Magnesium frame that prevents damage from bumps and drops;
- Bluetooth® connectivity for computer access and wireless access;
- Integrated Bluetooth® phone interface, a PRC exclusive.
About PRC
A 100% employee-owned company founded in 1966 and headquartered in Wooster, OH, PRC is a global leader in the development and manufacture of augmentative communication devices, computer access products, and other assistive technology for people with severe disabilities.
In addition to its powerful communication devices – ECO™-14, Vanguard™, Vantage™, SpringBoard™, and the new SpringBoard™ Lite and Vantage ™ Lite – PRC also provides a wide array of high-quality teaching and implementation tools, therapy materials, curriculum sequences, funding assistance, and training to speech-language pathologists, special educators, and the families of AAC communicators.
You can learn more about the book, Schuyler’s Monster, by visiting www.schuylersmonster.com. Learn more about the author by visiting his blog at www.schuylersmonsterblog.com.
For more information on PRC products and services, go to www.prentrom.com or call (800) 262-1984.
November 11, 2008
November Eleventh
Strange Meeting
-- Wilfred Owen
It seemed that out of battle I escaped
Down some profound dull tunnel, long since scooped
Through granites which titanic wars had groined.
Yet also there encumbered sleepers groaned,
Too fast in thought or death to be bestirred.
Then, as I probed them, one sprang up, and stared
With piteous recognition in fixed eyes,
Lifting distressful hands, as if to bless.
And by his smile, I knew that sullen hall,-
By his dead smile I knew we stood in Hell.
With a thousand pains that vision's face was grained;
Yet no blood reached there from the upper ground,
And no guns thumped, or down the flues made moan.
"Strange friend," I said, "here is no cause to mourn."
"None," said that other, "save the undone years,
The hopelessness. Whatever hope is yours,
Was my life also, I went hunting wild
After the wildest beauty in the world,
Which lies not calm in eyes, or braided hair,
But mocks the steady running of the hour,
And if it grieves, grieves richlier than here.
For by my glee might many men have laughed,
And of my weeping something had been left,
Which must die now I mean the truth untold,
The pity of war, the pity war distilled.
Now men will go content with what we spoiled,
Or, discontent, boil bloody, and be spilled.
They will be swift with swiftness of the tigress.
None will break ranks, though nations trek from progress.
Courage was mine, and I had mystery,
Wisdom was mine, and I had mastery:
To miss the march of this retreating world
Into vain citadels that are not walled.
Then, when much blood had clogged their chariot-wheels,
I would go up and wash them from sweet wells,
Even with truths that lie too deep for taint.
I would have poured my spirit without stint
But not through wounds; not on the cess of war.
Foreheads of men have bled where no wounds were.
I am the enemy you killed, my friend.
I knew you in this dark: for so you frowned
Yesterday through me as you jabbed and killed.
I parried; but my hands were loath and cold.
Let us sleep now . . ."
November 9, 2008
Bringing my fancy pants to Dayton
I visited the University of Dayton this past week, speaking to a couple of classes and then signing books and giving a presentation. I just wanted to take a moment and say that it was one of the best experiences to come out of this whole crazy book thing. Three days later, I'm still processing it.
There were a lot of memorable moments on my trip, but the thing that stays with me the most are the amazing students I met. The questions I got from students were of real depth, and the dialogues I had with them gave me a great deal to think about. I don't remember being that smart or that intellectually curious when I was in college, and I know I wasn't that well put-together. But then, my impressions of the University of Dayton were pretty much the same.
It's an impressive campus, with new facilities everywhere but still maintaining a sense of its history. UD is a Catholic university, run by the Marianists, who focus on issues of social justice and community, and it's clear that this focus permeates the thinking of the entire campus community. I was impressed by the level of commitment that the students maintained in building this spirit of community, both on campus and in the international service learning projects sponsored by the university.
So my thanks to Art and Tracey Jipson, as well as the Department of Sociology, Anthropology and Social Work, not just for having me on campus, but for making me feel welcome (bordering on superstar; my ego may never recover) and for giving me the chance to meet so many students and share Schuyler's story with them. I met some amazing people, and I can't wait to return to Dayton. How many times do you hear that?
There were a lot of memorable moments on my trip, but the thing that stays with me the most are the amazing students I met. The questions I got from students were of real depth, and the dialogues I had with them gave me a great deal to think about. I don't remember being that smart or that intellectually curious when I was in college, and I know I wasn't that well put-together. But then, my impressions of the University of Dayton were pretty much the same.
It's an impressive campus, with new facilities everywhere but still maintaining a sense of its history. UD is a Catholic university, run by the Marianists, who focus on issues of social justice and community, and it's clear that this focus permeates the thinking of the entire campus community. I was impressed by the level of commitment that the students maintained in building this spirit of community, both on campus and in the international service learning projects sponsored by the university.
So my thanks to Art and Tracey Jipson, as well as the Department of Sociology, Anthropology and Social Work, not just for having me on campus, but for making me feel welcome (bordering on superstar; my ego may never recover) and for giving me the chance to meet so many students and share Schuyler's story with them. I met some amazing people, and I can't wait to return to Dayton. How many times do you hear that?
November 4, 2008
Her world
In 2001, on the evening of September 11th, I sat in the dark while Julie cried and we both listened to the radio and the rumble of military jet fighters patrolling the skies of the east coast. I got up and went to Schuyler's room, scooped up my sleeping baby girl and brought her to sleep in our bed with us. And the thing I remember thinking was simply, "This is not the world I want my daughter to grow up in."
In the spring of 2003, on my lunch break, I walked into a cafeteria at the Yale Medical School with my friend Dana and sat, numb, as we watched the "shock & awe" bombing of Baghdad on CNN, surrounded by frightened students watching in near silence. And again, I thought of Schuyler, who was only months away from her monstrous diagnosis. I thought of her and the paranoid, grey world in which she was growing up, unaware of how much less certain it was soon to become for her. And again, it was not the world I wanted for her.
Tonight, twenty minutes ago, I watched the clock tick down to the polls closing on the west coast, and as soon as it hit zero, I saw the words on the screen as the networks pronounced Barack Obama the President-Elect of the United States. I watched the tears and laughter of people in Grant Park, white and black, as they watched history, REAL history being made. It wasn't just history stepping on them, squashing them under its cold boot like history has been doing since 2001. It was the history THEY made, the history that WE have made.
Now I sit here. I'm waiting for Barack Obama to come out and address the nation as the 44th president of the United States of America, and for the first time in the span of Schuyler's short life, I can say it, without hesitation and with a heart filled with anticipation and a sense of relief and rescue and possibility.
THIS is the world I want for my daughter. This one.
Busy week
On this historic day, I thought I would touch on the inevitable subject, the thing that's on everyone's mind today.
That's right. Let's talk about my upcoming public appearances.
Okay, yeah. I know.
Tomorrow I fly Dayton, Ohio to speak to some classes at the University of Dayton. I'll be giving a presentation Thursday evening, and if you live in the area, or close to the area, or in the general area of the area, I hope you'll come see me. You can watch me in my fancy pants speech-giving mode.
This coming Saturday, I'll be doing my last book signing for the hardcover edition, at a Barnes & Noble in Dallas. Schuyler will be there, signing books, and I really hope the folks I've met and talked to in the Dallas area will come by and see me.
Okay, so I'll see you in Ohio, and oh yeah, get your ass out to vote today. Unless you voted early, in which case, do with your ass as you please.
---
APPEARANCES
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 (map)
Dayton, OH 45409
Meet and listen to author and blogger, Robert Rummel-Hudson, talk about Life with Schuyler. Mr. Rummel-Hudson is the author of Schuyler's Monster: A Father's Journey with his Wordless Daughter. Schuyler was diagnosed with a rare neurological impairment that prevents her from speaking. The book documents the various challenges and moments of joy that accompanied their journey. Pizza will be available at 6pm in front of the Recital Hall prior to the presentation.
Book Signing
Saturday, November 8, 2008
1:00 pm
Barnes & Noble - Prestonwood Center (map)
5301 Belt Line Road
Dallas, TX 75254
972.980.0853
That's right. Let's talk about my upcoming public appearances.
Okay, yeah. I know.
Tomorrow I fly Dayton, Ohio to speak to some classes at the University of Dayton. I'll be giving a presentation Thursday evening, and if you live in the area, or close to the area, or in the general area of the area, I hope you'll come see me. You can watch me in my fancy pants speech-giving mode.
This coming Saturday, I'll be doing my last book signing for the hardcover edition, at a Barnes & Noble in Dallas. Schuyler will be there, signing books, and I really hope the folks I've met and talked to in the Dallas area will come by and see me.
Okay, so I'll see you in Ohio, and oh yeah, get your ass out to vote today. Unless you voted early, in which case, do with your ass as you please.
---
APPEARANCES
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 (map)
Dayton, OH 45409
Meet and listen to author and blogger, Robert Rummel-Hudson, talk about Life with Schuyler. Mr. Rummel-Hudson is the author of Schuyler's Monster: A Father's Journey with his Wordless Daughter. Schuyler was diagnosed with a rare neurological impairment that prevents her from speaking. The book documents the various challenges and moments of joy that accompanied their journey. Pizza will be available at 6pm in front of the Recital Hall prior to the presentation.
Book Signing
Saturday, November 8, 2008
1:00 pm
Barnes & Noble - Prestonwood Center (map)
5301 Belt Line Road
Dallas, TX 75254
972.980.0853
November 3, 2008
It's time.
I voted last week, as evidenced by my little "My vote counted" sticker. I joked a lot about how, when I voted for Obama in the most conservative voting county in Texas, I half expected the tornado sirens to go off, but the truth is that even here, there are a lot of Obama voters, judging from the yard signs and bumper stickers I've been seeing.
I don't think these are secret Democrats who have been tempted out of hiding. I suspect a lot of them are Republicans and Independents (like me, actually; it's been at least two election cycles since I've self-identified as a Democrat) who have seen an opportunity to do something different, before it's too late. I suspect there are a lot of people like myself who are afraid that if things keep going on the track they're going, this might be the last election where we actually choose a president rather than a local warlord. Parsing this election in terms of the fall of civilization too hyperbolic for you? Well, yeah, me too, probably, but still. As The Daily Show put it a few weeks ago, I sometimes think that Bush isn't just trying to become the worst president ever, but possibly the last.
Here's the thing, though. I have friends who are not only McCain supporters, but hard-core, right-wing, blood-red conservative Republicans. No, it's true. In fact, considering what a dick I can be about politics and religion, it's surprising how many of those friends I actually have. And I don't think they're deluded or suffering from a head injury. I think they're wrong, of course. But then, I suspect a lot of people think I'm wrong about a great many things. They stick around anyway, though, possibly for the same reason that some people watch auto racing from the safe seats in the back. What matters is that they are there. They remain my friends, and they care about their country.
You've probably heard a lot about how this is the most important election in this country since the Civil War, and that if you don't vote, the ghost of George Washington is going to show up in your bedroom late Wednesday night and poke you in the eye. I suspect that it's true, or mostly true, anyway. Well, maybe not the ghost part, as cool as that would be. But it does feel like we're at a point in our history where the high school textbooks of the future will start a new chapter.
Regardless of the outcome, regardless of your politics, and no matter how freaky you are about your position or how apathetic you might have become about the whole thing, go vote tomorrow. Go exercise maybe the one governing process the founding fathers gave you to participate in as a citizen that isn't completely fucked up now. Be a part of history, one way or the other.
-----
Edited to add: I just removed Google Ads from my site, due to the fact that California readers were being treated to a "Yes on Prop 8" ad on my site without my approval or even my knowledge. Thanks, Google. That was a pretty vile thing to do there. We're done, you and I.
Yay to the longtime reader who pointed it out to me in email. Boo to that same reader for asking why I'm opposed to gay marriage and in favor of writing discrimination into the constitution. ("I was very, very surprised and disappointed to discover that.") I mean, come on.
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 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..."
September 27, 2008
Event at fancy new Borders, by golly!
Signing and Discussion
October 4, 2008
4:00 pm
Borders Books and Music Watters Creek
965 Bethany
Allen, TX 75013
214-383-9676
Part of Educators Appreciation Weekend
Borders Books and Music Watters Creek
Schedule for October 4th
11:00 am - Special Kids Story Time with activity provided by the City of Allen
12:00 pm - Live radio show and book signing with Kim Snider, author of How To Be the Family CFO
2:30-4:00 pm - Book signing Sarah Goodall, author of The Palace Diaries
and Lady Colin Campbell, author of Empress Bianca
3:00-6:00 pm - Bounce House (located outside)
Provided by Fire House Bounce
4:00 pm - Signing and Discussion with Robert Rummel-Hudson, author of Schuyler's Monster
7:30 pm - Musician Mark Shelton
October 4, 2008
4:00 pm
Borders Books and Music Watters Creek
965 Bethany
Allen, TX 75013
214-383-9676
Part of Educators Appreciation Weekend
Borders Books and Music Watters Creek
Schedule for October 4th
11:00 am - Special Kids Story Time with activity provided by the City of Allen
12:00 pm - Live radio show and book signing with Kim Snider, author of How To Be the Family CFO
2:30-4:00 pm - Book signing Sarah Goodall, author of The Palace Diaries
and Lady Colin Campbell, author of Empress Bianca
3:00-6:00 pm - Bounce House (located outside)
Provided by Fire House Bounce
4:00 pm - Signing and Discussion with Robert Rummel-Hudson, author of Schuyler's Monster
7:30 pm - Musician Mark Shelton
September 23, 2008
Baby Monster
Not being a teacher or having any experience with kids other than my own (other than being a former child myself), I'm not sure if she's at the appropriate age for this, but Schuyler has become fascinated with babies. More to the point, she's become fascinated by the fact that babies start off in their mother's tummies.
Oh yeah. That's the conversation we've been having. This one I've left mostly to Julie.
You might remember that Schuyler has two monsters that she loves above all her others (with King Kong being the possible exception). They are from Star Wars, known in nerdspeak as "rancors", although if you are Schuyler, they are Sam and Margaret. (She asked me to name the second one; readers of my book will enjoy my choice.) I think she believes they are Cloverfield monsters, but now they've become her friends. And, as she was careful to note, they don't eat their friends. (Everyone else is presumably screwed.)
Sam and Margaret have been boyfriend and girlfriend for a while, but recently, Schuyler has begun referring to them as the mommy monster and the daddy monster. And of course, she keeps asking if Margaret has a baby monster in her tummy.
Um.
I wasn't sure how to deal with this; she's not even nine yet. But it seems really important to her, and so I've been trying to come up with something. And the thing is, I know that just about any bug-eyed monster toy would do. But as much of a slob as I can be in just about every aspect of my life, I am weirdly OCD when it comes to Schuyler. I have Issues.
Well, thanks to a line of Star Wars toys aimed at younger kids (although, perhaps predictably, coveted by thirtysomething Mom's-basement-dwellers who are making it hard to find except on eBay, ouch ouch ouch), a perfect answer presented itself.
If I can find one, I do believe I may have found Baby Monster.
Oh yeah. That's the conversation we've been having. This one I've left mostly to Julie.
You might remember that Schuyler has two monsters that she loves above all her others (with King Kong being the possible exception). They are from Star Wars, known in nerdspeak as "rancors", although if you are Schuyler, they are Sam and Margaret. (She asked me to name the second one; readers of my book will enjoy my choice.) I think she believes they are Cloverfield monsters, but now they've become her friends. And, as she was careful to note, they don't eat their friends. (Everyone else is presumably screwed.)
Sam and Margaret have been boyfriend and girlfriend for a while, but recently, Schuyler has begun referring to them as the mommy monster and the daddy monster. And of course, she keeps asking if Margaret has a baby monster in her tummy.
Um.
I wasn't sure how to deal with this; she's not even nine yet. But it seems really important to her, and so I've been trying to come up with something. And the thing is, I know that just about any bug-eyed monster toy would do. But as much of a slob as I can be in just about every aspect of my life, I am weirdly OCD when it comes to Schuyler. I have Issues.
Well, thanks to a line of Star Wars toys aimed at younger kids (although, perhaps predictably, coveted by thirtysomething Mom's-basement-dwellers who are making it hard to find except on eBay, ouch ouch ouch), a perfect answer presented itself.
If I can find one, I do believe I may have found Baby Monster.
Peeper Caper
We thought Schuyler lost her new glasses last week. We talked to her teachers and to the people who run her after school program, and we tore her school apart for two days looking for them. We managed to narrow down the time when they were lost, between her last class and the beginning of her after school program. The woman who runs the program insisted that Schuyler didn't have them on when she arrived, and despite the fact that there are probably a hundred kids in that program arriving at roughly the same time, we believed her.
I'm ashamed to say that it was only two days after they went missing that I took Schuyler for a walk around the school, asking her what she did with them. She'd originally told Julie that she took her glasses off in the gym, and when I asked, Schuyler's story didn't change. This time, rather than getting any input from anyone else, I just let Schuyler show me what she did.
Quietly but with an air of certainty and even relief that she was finally being taken seriously, Schuyler again said she took them off in the gym and then showed me where she took them, to where her backpack was left every day with the rest of the kids'. She showed me how she took her glasses off and placed them in the hard, clam-shell case and slipped them into the mesh side pocket of her backpack, snug bug visible. And when she returned for them, they were gone.
I feel bad for not listening to her more closely; in my defense, it was the first time I'd been there with her, and Julie got distracted early on by the insistent protestations by the program head that Schuyler absolutely did not have her glasses on when she arrived. I feel bad about it, because based on what Schuyler says and on the unlikelihood of that big purple case just vanishing into thin air during a walk down one hallway between classes, I now don't think Schuyler's glasses were lost.
Yeah, I think they were probably stolen.
The older I get, the more I realize that while I once thought I liked kids, it is becoming increasingly clear that really, I probably only like my own.
I'm ashamed to say that it was only two days after they went missing that I took Schuyler for a walk around the school, asking her what she did with them. She'd originally told Julie that she took her glasses off in the gym, and when I asked, Schuyler's story didn't change. This time, rather than getting any input from anyone else, I just let Schuyler show me what she did.
Quietly but with an air of certainty and even relief that she was finally being taken seriously, Schuyler again said she took them off in the gym and then showed me where she took them, to where her backpack was left every day with the rest of the kids'. She showed me how she took her glasses off and placed them in the hard, clam-shell case and slipped them into the mesh side pocket of her backpack, snug bug visible. And when she returned for them, they were gone.
I feel bad for not listening to her more closely; in my defense, it was the first time I'd been there with her, and Julie got distracted early on by the insistent protestations by the program head that Schuyler absolutely did not have her glasses on when she arrived. I feel bad about it, because based on what Schuyler says and on the unlikelihood of that big purple case just vanishing into thin air during a walk down one hallway between classes, I now don't think Schuyler's glasses were lost.
Yeah, I think they were probably stolen.
The older I get, the more I realize that while I once thought I liked kids, it is becoming increasingly clear that really, I probably only like my own.
September 18, 2008
Shameless request for help
Okay, so I just found out that I have, um, very little time to turn in any typos and edits to St. Martin's Press for the paperback. So if you have read my book and you saw anything that jumped out at you as wrong or weird, please drop me a line or leave a comment. You'll have my eternal gratitude, which is probably worth more than your stock portfolio at this point, right? Am I right?
I promise, I'll post something real soon, maybe later today. Lots to talk about regarding Schuyler, the love of my life, my little mermaid princess, my reason for living, as soon as I drive to her school and look for the new glasses that she lost. After a week and a half.
Ten days. Yeah.
I promise, I'll post something real soon, maybe later today. Lots to talk about regarding Schuyler, the love of my life, my little mermaid princess, my reason for living, as soon as I drive to her school and look for the new glasses that she lost. After a week and a half.
Ten days. Yeah.
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