January 4, 2008
SCHUYLER'S MONSTER: "The best that we can..."
Transcript:
Julie: I think it's really shown me what I'm capable of, what my strengths are. Learning not to back down to teachers, to school administrators, to our families when they doubted us, that we just kind of did our own thing and persevered.
It's a pretty eye-opening experience, getting handed this huge responsibility for this little person, and being told "You have no guide book, you have no rules. This is what's wrong with your kid, and you have no idea why, and just, here you go, here's the book. Enjoy. Try to do the best that you can."
And I feel like we have done the best that we can. Some days are good, some days are bad. But at the end of the day, I think you and I can feel confident in knowing that we've raised a pretty amazing kid.
January 3, 2008
SCHUYLER'S MONSTER: Advocacy
Transcript:
Rob: You as parents and family of broken children and disabled family members, you are the absolute best advocates for your loved ones. And that's hard. It's hard because it's... we want to defer to experts. Julie and I were both music majors. We had no experience with children. All that we knew was what we, what we felt in our gut about Schuyler.
And, you know, the experts and the doctors, they've been amazing, they've been great for us. But the one thing that they can't do is they can't tell the future. And we want them to, we want to hear that everything's going to be okay.
But the future's not written. You're writing the future, and your child is writing the future. And if you feel like the information you're being given isn't correct, isn't right, you have to go with that instinct. Because nobody knows your child like you do, nobody senses the things that are true and real about your child like you do.
There were two points in Schuyler's life that had we followed the advice we were given, by experts, and really "expert" experts, had we listened to that advice, Schuyler's life would be nothing like it is now. It was the fact that we didn't, we didn't feel right, and that we, we kept pushing for better answers that we finally got them.
So believe in yourself. That's hard, but it's absolutely vital, and in the end, in the end you'll be so glad that you did.
January 1, 2008
SCHUYLER'S MONSTER: Making a New Kind of Family
Transcript:
Rob: Being in a family with a special needs family member, particularly a child, it's very difficult. It's very hard on a family, it's very hard on a marriage. The divorce rate amongst couples with a disabled child is incredibly high, it's very depressing. And it's... it's hard because I think when you're in a relationship, you know, sometimes when things are hard you want to have that person you can turn to. But when that person is also in that same situation, you think that that's an ideal situation. And you know what? Sometimes it's not, sometimes it's the opposite. Sometimes two people fighting the same demons, they just, you know, it's so hard to be sympathetic, so hard to get out of your own head and out of your own world. And it's very difficult for families.
I think for a family to make it work, for a family to work out the issues inherent in having a special needs child, I think the secret is you just have to take all the narrative that society's handed you, all the expectations, and you just have to blow them away, start with a clean slate. Because the rules for your family and the rules for your child are going to be completely new. They're going to be, they're going to be... You've got to find your way, you've got to find your way, because they're not going to apply to anyone else.
I can write this book. I've read a lot of books, and I'll continue to read books, by other special needs parents. But the thing that strikes me is how every one of these stories is different, every single person has a different reaction, every single person, every single family member has a different way of dealing with it.
And that's fine, that's the way it should be, but you've got to find your own way. Because the standard rules aren't going to help you, they're not going to help you at all. They're just going to make you feel bad, they're going to make you feel like you're doing it wrong. But you're NOT doing it wrong, you just have to find the right way, and no one else can tell you that but you.
So it's hard, it's hard to find that, but it's also very rewarding. I can't think of anything in my life that's challenged me more or has made me grow more as a person. So it's worth it. It's hard, but it's worth it.
December 31, 2007
And a happy new year...
It's weird, 2007 felt like it lasted about thirty minutes.
You know, this time last year, I had a pretty good idea what I'd be doing a year in the future. Turns out, I'd be doing exactly what I was doing then: waiting for the book to come out.
(Forty-nine days, yikes.)
Today, as we get ready for 2008, we have less of an idea what the next year will bring than we have in years. The last time this family's future was so uncertain, maybe five years ago or so, it was because Schuyler's monster was still unidentified and romping through her world with impunity. Back then, we would watch the new year roll over with something akin to dread, with no idea how or even if Schuyler would find her way. We'd sit watching the celebrations on TV, silently pushing down the fear at what the new year might have in store for Schuyler.
On the whole, I like this kind of uncertainty much better. Happy new year, everyone, and thanks for sticking with me this long.
You know, this time last year, I had a pretty good idea what I'd be doing a year in the future. Turns out, I'd be doing exactly what I was doing then: waiting for the book to come out.
(Forty-nine days, yikes.)
Today, as we get ready for 2008, we have less of an idea what the next year will bring than we have in years. The last time this family's future was so uncertain, maybe five years ago or so, it was because Schuyler's monster was still unidentified and romping through her world with impunity. Back then, we would watch the new year roll over with something akin to dread, with no idea how or even if Schuyler would find her way. We'd sit watching the celebrations on TV, silently pushing down the fear at what the new year might have in store for Schuyler.
On the whole, I like this kind of uncertainty much better. Happy new year, everyone, and thanks for sticking with me this long.
December 30, 2007
SCHUYLER'S MONSTER: The Monster
It's funny, because we both sort of lose our composure a tiny bit in this one, and yet despite that (or maybe because of it), I think it's my favorite.
Transcript:
Rob: So when Schuyler was about eighteen months old, her pediatrician determined that there was some sort of developmental delay with her speech. She wasn't speaking, she wasn't trying to form words, and it was a concern. Initially she was tested for hearing problems, and she went through a whole series of, of different types of hearing tests that, that ultimately she passed. She went through a lot of different evaluations and tests. She at one point was given a diagnosis of an autism spectrum disorder that, it didn't, it didn't fit. And so she... It took a while for us to finally to figure out what was going on.
When she was three years old she received an MRI scan, and that took the picture of the problem. The problem was a brain malformation, a very rare disorder called polymicrogyria, and it affects the formation of the brain, the shape of the brain, and in her case it affects her speech area. There are other kids who suffer from it with a really wide range of symptoms. Most, some, most kids will suffer some level of mental retardation. Speech, swallowing disorders are common, and almost all kids who suffer from this suffer from seizures. Some of them are pretty bad, too. It can actually, it can actually... kill really young kids who have this. So there were a lot of concerns on a lot of issues.
When she first got that diagnosis, it was hard, it was really hard for us. Because you think you want an answer, you say, "You know, I just want an answer." But sometimes you get that answer, and it's, it's not the answer that you're looking for.
Julie: That was rough because we went into it thinking nothing was wrong, and we'd been told that if something was wrong, they would have called us right away. And so, I think we sat back on our heels and we got comfortable. And we thought, "Nothing, no big deal, we're just going to go in for a checkup." And then as soon as we stepped into the room, you felt, you felt this air of like, something was wrong, something was really wrong.
It just seems like yesterday still. And it was so beautiful outside. It was such a beautiful day. Because I remember, she was impervious, and she just played, she didn't care at all. And I just tried to keep it together, and tried not to cry. We did a lot of crying after that, I know.
I still do, to this day. There are days that are good and days that are bad. And it just, it gets to you, because it's just, it's so unfair. You know, this beautiful little creature, caught under glass. She can't, she can't, you know, maybe that's my charming mixed metaphor, but that's the way I feel like sometimes. She's this beautiful butterfly that's pinned down and caught under glass and she can't fly away. But she tries. She tries pretty damn hard.
Transcript:
Rob: So when Schuyler was about eighteen months old, her pediatrician determined that there was some sort of developmental delay with her speech. She wasn't speaking, she wasn't trying to form words, and it was a concern. Initially she was tested for hearing problems, and she went through a whole series of, of different types of hearing tests that, that ultimately she passed. She went through a lot of different evaluations and tests. She at one point was given a diagnosis of an autism spectrum disorder that, it didn't, it didn't fit. And so she... It took a while for us to finally to figure out what was going on.
When she was three years old she received an MRI scan, and that took the picture of the problem. The problem was a brain malformation, a very rare disorder called polymicrogyria, and it affects the formation of the brain, the shape of the brain, and in her case it affects her speech area. There are other kids who suffer from it with a really wide range of symptoms. Most, some, most kids will suffer some level of mental retardation. Speech, swallowing disorders are common, and almost all kids who suffer from this suffer from seizures. Some of them are pretty bad, too. It can actually, it can actually... kill really young kids who have this. So there were a lot of concerns on a lot of issues.
When she first got that diagnosis, it was hard, it was really hard for us. Because you think you want an answer, you say, "You know, I just want an answer." But sometimes you get that answer, and it's, it's not the answer that you're looking for.
Julie: That was rough because we went into it thinking nothing was wrong, and we'd been told that if something was wrong, they would have called us right away. And so, I think we sat back on our heels and we got comfortable. And we thought, "Nothing, no big deal, we're just going to go in for a checkup." And then as soon as we stepped into the room, you felt, you felt this air of like, something was wrong, something was really wrong.
It just seems like yesterday still. And it was so beautiful outside. It was such a beautiful day. Because I remember, she was impervious, and she just played, she didn't care at all. And I just tried to keep it together, and tried not to cry. We did a lot of crying after that, I know.
I still do, to this day. There are days that are good and days that are bad. And it just, it gets to you, because it's just, it's so unfair. You know, this beautiful little creature, caught under glass. She can't, she can't, you know, maybe that's my charming mixed metaphor, but that's the way I feel like sometimes. She's this beautiful butterfly that's pinned down and caught under glass and she can't fly away. But she tries. She tries pretty damn hard.
December 29, 2007
SCHUYLER'S MONSTER: Julie's Privacy
Transcript:
Rob: So for years, I wrote online about my life and my life with Schuyler. I didn't write a lot about Julie. She had asked early on for her privacy. I think she thought that the blogging thing, it was like the Truman Show and she was going to be on display and have her life on display all the time, so I respected that. And so she was sort of the silent partner.
Julie: I'm a hermit, and I don't like people who don't know me to know about me, I guess. In person it's fine, but I don't know. I just got a little spooked, I guess?
Rob: The book certainly reflects more of Julie's role in Schuyler's life. She's a fantastic mom, she's incredible. But it's still my story. Julie's story is hers to tell. I would not feel comfortable trying to tell her story. And so instead it's a book about a father, and a book about my experiences with Schuyler, certainly.
Julie: I just feel that fathers need to have a good say in things as well, and it's not just, you know, "Here, you play with the kid and then go do your thing." You really, you interact with her really well, and she really loves you a lot. I think it's nice.
Rob: Maybe one day Julie will tell her story. I think that would be kind of cool.
December 28, 2007
SCHUYLER'S MONSTER: Being Schuyler's Mom
Transcript:
Julie: She is the embodiment of extraordinary, and I don't say that lightly. She is like the best part of me. She's, she's this amazing person and it's, it's crazy because if you're having a bad day and you see her, it just, pfft, it just makes everything different and she's - she is extraordinary. I mean that's the best way to describe her. Everyone that we come into contact with tells us how amazing she is and it's kind of, kind of an empowering feeling knowing that I helped to facilitate that.
December 27, 2007
SCHUYLER'S MONSTER: What’s the book about?
Transcript: (Thanks to our good friend Pat!)
Rob: So I guess it's the first question that most authors get: What is your book about? I'm not sure that I have a real easy answer for that. On the surface, at least, it's a story about a little girl, with a crazy, cool attitude, and an independent spirit, but also with a problem, with a serious problem, her monster, that affects her quality of life pretty seriously.
And it's also the story of her father, me, and how I had to learn to become the person that she needed for me to be, even though I had my own insecurities, and even though I was convinced I was the wrong person for the job; but I had to step up and is the story of how she taught me to be the person that she needed and the father that she required. I guess if I had to, if I had to give an easy answer I would say even though it sounds kind of corny, I would say it's a love story. It's a story about love and how sometimes, that's all you have, sometimes that's the only, that's the only weapon you've got against, against a monster – is you've got your love. And it may be dumb love and it may be uninformed and just blind, but sometimes it is enough, at least to get you to the places that you need to be.
So I guess I've written a love story; which I'm not sure what I set out to do, but...
Ho Ho Hum
Have a nice holiday, whatever flavor you celebrate? We had a good one, which is nice for us but boring for you. Sorry. I could make some stuff up, because I don't anticipate the next week or so to be filled with much more than relaxation and more children's programming than any adult should be expected to endure without alcohol.
So for the next few weeks, as we get closer to the book release (fifty-three days and counting, by golly), I'm going to feature the videos that Julie and I put together a few months ago for the book site. The production values are pretty bad, but there's love in them videos, you hear me? Love!
I hope everyone's having a nice holiday break. Brace yourself for the new year. I have a feeling that 2008's going to be crazy time.
So for the next few weeks, as we get closer to the book release (fifty-three days and counting, by golly), I'm going to feature the videos that Julie and I put together a few months ago for the book site. The production values are pretty bad, but there's love in them videos, you hear me? Love!
I hope everyone's having a nice holiday break. Brace yourself for the new year. I have a feeling that 2008's going to be crazy time.
December 24, 2007
December 23, 2007
Santa Claus Conquers the Martian
Schuyler saw Santa tonight, in what is apparently becoming a holiday tradition of going on the 23rd. Well, I'm not sure if it's actually tradition so much as "Oh shit, tomorrow's Christmas Eve!", but I sort of like doing it on the last non-holiday shopping day. I mean, after seeing Santa, what's left? I never understood all the parents who took their kids to see Santa the day after Thanksgiving. If I were a kid, I'd be afraid he was going to forget what I wanted by the time Christmas Eve actually rolled around. I mean, the man never even writes anything down. You're really going to trust some minimum wage elf to jot that down for him?
Schuyler prepared for her audience with Santa just like she did last year, although her list was shorter and weirder this go around. ("I want magic wand and roller skates." I hate to tell you, little friend, but Santa might just veto the skates. That idea has tragedy and the emergency room written all over it.) The wait in line wasn't as grueling as last year, thanks in large part to a balloon-artist elf (she asked for and received "monkey and banana") who also did magic, much to Schuyler's amazement. Pull a ball out of her nose and you've got her undivided attention.
This year, Santa was different from last time. He wasn't in his full-on red suit uniform, but was in his "hanging around the toy shop, throwing back some nog with the elves" outfit. Just like last year, however, Schuyler seemed to tap into some deeper well of attention from him. When she broke out her device and said "Hello Santa!", he asked me if she signed. I said that she did a little, and once they were done, he signed "thank you", to her delight. He listened intently, and his voice cracked a little when he told us sternly "You make sure this little girl gets what she wants!"
(I was thinking, "Dude, you're Santa, you're the one bringing presents, remember? Don't be outing us like that!")
Schuyler wrote out what I thought was supposed to be a list, but the whole thing was in an undecipherable Martian scribble, except for the last few words, "...for me. Love Schuyler" She brought it with her, but in the excitement of seeing Santa, she forgot about it until we were standing at the cashier's station paying. Julie gave it to the cashier elf to give to Santa. She tried to hand it to him, but he waved Schuyler back, sat her back in his lap as they looked at it together.
"Now, you go home and put this under your tree, and when I come to your house, I'll see it and remember what you asked for." She nodded, carefully folded the note and walked reluctantly away, turning to wave goodbye to him a few times.
This was only Schuyler's second visit with Santa, but like last year, it was a good one. Her visit with Santa last Christmas was so special that it made it into the book, but this year was just as good in its own way. This year, she was more confident and relaxed, a big girl who had already met The Man before. No need to be so nervous this year. She and Santa are buds now.
I have no idea how much longer she'll believe in Santa, or how much she even believes in him now. Sometimes she'll act like a pill, and when one of us hauls out the big guns ("Do you want us to call Santa and tell him what a turd you're being?"), she gets genuinely upset, so clearly he's got plenty of power in her world. I sometimes wonder if she'll be too jaded for Santa one day, but I suspect that even after she figures it out, she'll keep playing along, just for her poor father's benefit. I think she probably knows how sad I'll be when Santa's gone, and as she's shown time and again, she won't abide my sadness if she can help it. And she can usually help it.
I don't know. Perhaps Santa is Schuyler's gift to us, and not the other way around.
Schuyler prepared for her audience with Santa just like she did last year, although her list was shorter and weirder this go around. ("I want magic wand and roller skates." I hate to tell you, little friend, but Santa might just veto the skates. That idea has tragedy and the emergency room written all over it.) The wait in line wasn't as grueling as last year, thanks in large part to a balloon-artist elf (she asked for and received "monkey and banana") who also did magic, much to Schuyler's amazement. Pull a ball out of her nose and you've got her undivided attention.
This year, Santa was different from last time. He wasn't in his full-on red suit uniform, but was in his "hanging around the toy shop, throwing back some nog with the elves" outfit. Just like last year, however, Schuyler seemed to tap into some deeper well of attention from him. When she broke out her device and said "Hello Santa!", he asked me if she signed. I said that she did a little, and once they were done, he signed "thank you", to her delight. He listened intently, and his voice cracked a little when he told us sternly "You make sure this little girl gets what she wants!"
(I was thinking, "Dude, you're Santa, you're the one bringing presents, remember? Don't be outing us like that!")
Schuyler wrote out what I thought was supposed to be a list, but the whole thing was in an undecipherable Martian scribble, except for the last few words, "...for me. Love Schuyler" She brought it with her, but in the excitement of seeing Santa, she forgot about it until we were standing at the cashier's station paying. Julie gave it to the cashier elf to give to Santa. She tried to hand it to him, but he waved Schuyler back, sat her back in his lap as they looked at it together.
"Now, you go home and put this under your tree, and when I come to your house, I'll see it and remember what you asked for." She nodded, carefully folded the note and walked reluctantly away, turning to wave goodbye to him a few times.
This was only Schuyler's second visit with Santa, but like last year, it was a good one. Her visit with Santa last Christmas was so special that it made it into the book, but this year was just as good in its own way. This year, she was more confident and relaxed, a big girl who had already met The Man before. No need to be so nervous this year. She and Santa are buds now.
I have no idea how much longer she'll believe in Santa, or how much she even believes in him now. Sometimes she'll act like a pill, and when one of us hauls out the big guns ("Do you want us to call Santa and tell him what a turd you're being?"), she gets genuinely upset, so clearly he's got plenty of power in her world. I sometimes wonder if she'll be too jaded for Santa one day, but I suspect that even after she figures it out, she'll keep playing along, just for her poor father's benefit. I think she probably knows how sad I'll be when Santa's gone, and as she's shown time and again, she won't abide my sadness if she can help it. And she can usually help it.
I don't know. Perhaps Santa is Schuyler's gift to us, and not the other way around.
The Unbirthday Song
In regards to her birthday, I think we really screwed with Schuyler's head this year. First she had her birthday party a few weeks ago, with her best friend from the Box Class. That was trippy enough for her, sharing her birthday celebration with another kid, but as it turned out, the party happened to fall on Julie's birthday as well. So there she was, at a birthday party on her mother's birthday, but the party wasn't for Mommy, it was for Schuyler and her friend, neither of whose birthday it actually was.
Right about the time she managed to wrap her head around that, her actual birthday rolled around last Friday, celebrated with a dinner at her beloved Purple Cow. (Oh Cow, how we adore thee. They even know her by name.) Then yesterday, we went to see my brother and his family so they could have birthday cake with Schuyler and give her a birthday present. THEN we'll be going back over on Christmas Eve for family gift fun, followed by Christmas Day here at home, all of which will involve more gifts and food and whatnot.
January's shaping up to be one long, sad, giftless month. At least she got a kickass birthday cake.
Right about the time she managed to wrap her head around that, her actual birthday rolled around last Friday, celebrated with a dinner at her beloved Purple Cow. (Oh Cow, how we adore thee. They even know her by name.) Then yesterday, we went to see my brother and his family so they could have birthday cake with Schuyler and give her a birthday present. THEN we'll be going back over on Christmas Eve for family gift fun, followed by Christmas Day here at home, all of which will involve more gifts and food and whatnot.
January's shaping up to be one long, sad, giftless month. At least she got a kickass birthday cake.
December 21, 2007
Eight? How can that be possible?
Happy birthday, Schuyler. You mean more to me than I know how to say, although I'll never stop trying.
(By the way, if you've sent Schuyler anything from Amazon, please drop me a line and let me know. They keep coming from third party vendors with no indication of who sent them.)
December 17, 2007
Box Days
The monster was unusually present this weekend, albeit held at bay. Schuyler participated in a caroling party with other kids who use AAC technology, and while it was a fascinating and occasionally heartbreaking experience, it also involved a lot of other people whose stories aren't mine to tell. I'll simply say that it was yet another one of those experiences with other, more broken kids where I felt despair, while Schuyler just saw an opportunity for seasonally appropriate merriment. (At one point she decided to take over and conduct the performance.) One day, I'll learn to see this grand rough world like Schuyler does, rather than in my old sad bastard way.
I recently heard from a magazine editor who wanted to do something on Schuyler's Monster for the magazine's February issue. After he got a copy of the book, he suggested something different. Rather than a standard minireview of the book itself, he wanted to do a story about us and the book, but with a twist.
He wanted to interview Schuyler, on her device, via email or instant message.
I initially hesitated, although I'm not entirely sure why. I mean, I try to insulate Schuyler from all of the book spazzing and hype, but that's perhaps a little naive, considering that she is the title character of the book, her face splashed across the cover. For better or for worse (better, I feel pretty sure), Schuyler's along for the ride on this. Furthermore, I dig this magazine, which is both a little fancy and a little shit-disturbing at the same time, and I like the executive editor, whose writing I am familiar with from his days at a now-defunct Dallas weekly alternative paper. It was an interesting idea, one that simultaneously triggered my defensive dad reflex and my curiosity. After consulting Julie and Schuyler, curiosity won out.
In the end, we opted for an interview conducted over email, partly because I wanted to be able to take time with Schuyler to make sure she understood the questions, and partly because I wasn't entirely sure how to make the Big Box of Words work with an IM client. (Incidentally, it turns out that it is stupidly easy.) I won't go into the details of the interview itself, since that's obviously for someone else's publication, but I felt like it went pretty well. Schuyler was very careful and particular in her unusually long-winded responses, and the only help she needed from me was in spelling some words she couldn't find on her device.
There was a question about her dreams, and while I'm not 100% sure she entirely understood it, I was nevertheless interested to see what she'd have to say. Schuyler's dreams have always fascinated me, mostly because of all the parts of her life that we are occasionally privy to, her dreams remain the most unreachable. She has never shared them with us in any meaningful way; I can only think of one time before now, after she was troubled by a bad dream about monsters of some kind. But even then, she didn't seem frightened, only very sad, and she wouldn't share any details.
That's how it is with Schuyler. As she gets older, some doors open up to us, and we can see parts of her world that were closed off to us before. But she can slam them closed whenever she wants, and sometimes she makes that choice, particularly when she's pissed off. She stops using her device, throws her arms in frustration, and starts jabbering in a stream of Schuylerese that is two parts Martian and one part whine. Schuyler can be a pill when she chooses to be.
Even when she's happy, though, there are doors seemingly forever closed to us. Her dreams are her own, and so are her songs. She breaks into little melodies of her own creation, with lyrics that go forever untranslated. I'm learning not to ask her about her music, as that is the fastest way to make her stop singing. When Schuyler sings, you listen and you take the part that is meant for you, the sweet and untethered melodies that flit around like moths, never landing, always moving. The lyrics we just have to live without. They are hers alone.
I recently heard from a magazine editor who wanted to do something on Schuyler's Monster for the magazine's February issue. After he got a copy of the book, he suggested something different. Rather than a standard minireview of the book itself, he wanted to do a story about us and the book, but with a twist.
He wanted to interview Schuyler, on her device, via email or instant message.
I initially hesitated, although I'm not entirely sure why. I mean, I try to insulate Schuyler from all of the book spazzing and hype, but that's perhaps a little naive, considering that she is the title character of the book, her face splashed across the cover. For better or for worse (better, I feel pretty sure), Schuyler's along for the ride on this. Furthermore, I dig this magazine, which is both a little fancy and a little shit-disturbing at the same time, and I like the executive editor, whose writing I am familiar with from his days at a now-defunct Dallas weekly alternative paper. It was an interesting idea, one that simultaneously triggered my defensive dad reflex and my curiosity. After consulting Julie and Schuyler, curiosity won out.
In the end, we opted for an interview conducted over email, partly because I wanted to be able to take time with Schuyler to make sure she understood the questions, and partly because I wasn't entirely sure how to make the Big Box of Words work with an IM client. (Incidentally, it turns out that it is stupidly easy.) I won't go into the details of the interview itself, since that's obviously for someone else's publication, but I felt like it went pretty well. Schuyler was very careful and particular in her unusually long-winded responses, and the only help she needed from me was in spelling some words she couldn't find on her device.
There was a question about her dreams, and while I'm not 100% sure she entirely understood it, I was nevertheless interested to see what she'd have to say. Schuyler's dreams have always fascinated me, mostly because of all the parts of her life that we are occasionally privy to, her dreams remain the most unreachable. She has never shared them with us in any meaningful way; I can only think of one time before now, after she was troubled by a bad dream about monsters of some kind. But even then, she didn't seem frightened, only very sad, and she wouldn't share any details.
That's how it is with Schuyler. As she gets older, some doors open up to us, and we can see parts of her world that were closed off to us before. But she can slam them closed whenever she wants, and sometimes she makes that choice, particularly when she's pissed off. She stops using her device, throws her arms in frustration, and starts jabbering in a stream of Schuylerese that is two parts Martian and one part whine. Schuyler can be a pill when she chooses to be.
Even when she's happy, though, there are doors seemingly forever closed to us. Her dreams are her own, and so are her songs. She breaks into little melodies of her own creation, with lyrics that go forever untranslated. I'm learning not to ask her about her music, as that is the fastest way to make her stop singing. When Schuyler sings, you listen and you take the part that is meant for you, the sweet and untethered melodies that flit around like moths, never landing, always moving. The lyrics we just have to live without. They are hers alone.
December 16, 2007
December 10, 2007
She's here about the reaping.
Well, okay, enough of the PajamasMedia idiocy. I'll just have to be more discriminating when choosing what part of the Internet lawn to step in next time. I feel like I just ruined a good pair of shoes.
Besides, as someone pointed out to me, the opponents of inclusion lost their war. The Individuals with Disabilities Education Act is the law of the land and it protects the rights of about six and a half million kids from the assmonkeys who would ghettoize them. (Although I do not believe that assmonkeys are explicitly named in the legislation. So, you know, watch out for loopholes.)
So two little things tonight instead.
First of all, if you go to my book's Amazon page, you'll see that the cover is finally showing up. (While you're there, why not buy a few copies for all your friends? You'll laugh, you'll cry, you'll kiss fifteen dollars and sixty one cents goodbye... Okay, I'll stop.) One more step towards the big day, which is now only seventy days away. I have no idea why that little "tent" is still there, however.
The other small item tonight is sort of weird, but like most things that Schuyler conjures up out of the Martian atmosphere, I just ran with it. For the past few weeks, Schuyler has been asking about death. She originally brought it up in a question about my father (whom she now believes resides in every cemetery we drive past), but after I answered her questions honestly, she's become fascinated by the topic in general.
Tonight, while we were playing, she told me that I was dead. (She even made up a sign for it; her hand touches her forehead, similar to the ASL sign for sick, but then it flies off like, well, your soul, I guess.) She instructed me to lie motionless on my bed while she concocted a ceremony of her very own, singing a jaunty little tune to herself as she went back and forth from her room to fetch supplies and mourners.
If you should attend my funeral in the hopefully distant future, here's what you might expect from Schuyler. First, she ritualistically waved various pieces of plastic jewelry over my head. (The gesture seemed oddly Catholic to me, heathen that I am.) She then took a play fork and offered me invisible food. But if I tried to eat it, she gave me a stern "No!"
"Daddy, you're dead," she reminded me.
After I explained to her that at a funeral, someone gives a speech to say goodbye to the person and tell why they'll be missed, she wisely selected Jasper, the elder statesman of her toy animals, to put my life in perspective. He chose to deliver my eulogy in Martian, of course.
I know this all sounds wildly creepy, and I must admit, it wasn't my first choice of a game to play, especially not two weeks after my fortieth birthday. But I'm proud of her for asking about such a rough concept, and for continuing to turn it over in her head as she tries to make sense of it. Like so many other things in her life, she doesn't find it sad, only puzzling.
At the end of our game, Schuyler decided she wanted to be dead, too. I'm not sure real corpses giggle that much, though.
Besides, as someone pointed out to me, the opponents of inclusion lost their war. The Individuals with Disabilities Education Act is the law of the land and it protects the rights of about six and a half million kids from the assmonkeys who would ghettoize them. (Although I do not believe that assmonkeys are explicitly named in the legislation. So, you know, watch out for loopholes.)
So two little things tonight instead.
First of all, if you go to my book's Amazon page, you'll see that the cover is finally showing up. (While you're there, why not buy a few copies for all your friends? You'll laugh, you'll cry, you'll kiss fifteen dollars and sixty one cents goodbye... Okay, I'll stop.) One more step towards the big day, which is now only seventy days away. I have no idea why that little "tent" is still there, however.
The other small item tonight is sort of weird, but like most things that Schuyler conjures up out of the Martian atmosphere, I just ran with it. For the past few weeks, Schuyler has been asking about death. She originally brought it up in a question about my father (whom she now believes resides in every cemetery we drive past), but after I answered her questions honestly, she's become fascinated by the topic in general.
Tonight, while we were playing, she told me that I was dead. (She even made up a sign for it; her hand touches her forehead, similar to the ASL sign for sick, but then it flies off like, well, your soul, I guess.) She instructed me to lie motionless on my bed while she concocted a ceremony of her very own, singing a jaunty little tune to herself as she went back and forth from her room to fetch supplies and mourners.
If you should attend my funeral in the hopefully distant future, here's what you might expect from Schuyler. First, she ritualistically waved various pieces of plastic jewelry over my head. (The gesture seemed oddly Catholic to me, heathen that I am.) She then took a play fork and offered me invisible food. But if I tried to eat it, she gave me a stern "No!"
"Daddy, you're dead," she reminded me.
After I explained to her that at a funeral, someone gives a speech to say goodbye to the person and tell why they'll be missed, she wisely selected Jasper, the elder statesman of her toy animals, to put my life in perspective. He chose to deliver my eulogy in Martian, of course.
I know this all sounds wildly creepy, and I must admit, it wasn't my first choice of a game to play, especially not two weeks after my fortieth birthday. But I'm proud of her for asking about such a rough concept, and for continuing to turn it over in her head as she tries to make sense of it. Like so many other things in her life, she doesn't find it sad, only puzzling.
At the end of our game, Schuyler decided she wanted to be dead, too. I'm not sure real corpses giggle that much, though.
Apology
As you'll see when you finally get a chance to read SCHUYLER'S MONSTER, I don't shy away from talking about my own shortcomings as a father. No one's perfect, and sometimes I feel farther from from that perfection than most. And today, I need to address something.
I owe an apology. To Schuyler.
The first time I wrote an article for PajamasMedia.com, I wasn't completely aware of just how conservative their readership was, but if I had gotten a better feel for the site, I probably would have written for them anyway. My own liberal outlook doesn't mean I'm closed to conservatives and their beliefs. One of Schuyler's most adamant and consistent supporters, going back for years, is standing out on the very leading edge of the right wing, his toes dangling happily in the wind. Julie's parents are pretty conservative, and few people do more for Schuyler on a daily basis than they do. One of the themes of my first essay on PajamasMedia, and a big chunk of the book as well, addresses how wrong I was to prejudge the conservatives of Plano in the first place. I don't believe that the issues surrounding special needs parenting fall into partisan ideological areas, any more than the monsters that stalk these kids do so according to how their parents vote.
Nevertheless, after some of the personal comments left on that first essay, I wrote a second essay with some hesitation, and sure enough, the reactions were incrementally worse. I wasn't bothered by the personal attacks this time, either, although I did make an attempt to clarify a few things and also to defend myself against one particularly dishonest remark. (And a reminder to the kids: RESPONDING TO TROLLS IS ALWAYS ALWAYS ALWAYS A MISTAKE.) I was accused of being bitter and rude, as if the opponents of inclusion would happily invite our broken kids into their kids' classrooms, if only we'd just ask politely. I was accused of ignoring the plight of kids whose problem is that they are too gifted for their public schools, which is absolutely true. I certainly don't oppose the same kinds of programs for exceptionally gifted children as for those with disabilities. Not one bit. Why would I? It's simply not my fight, and it's not an issue that I know much about, so I didn't take it on. And best of all, I was even accused on one site of being a wealthy, pretentious snob, mostly because I have a hyphenated last name. Everyone knows that hyphens are plated in gold. I keep mine in a special vault.
But when someone posted at length last night about how my "feeble minded" child was destroying the schools for the rest of the kids, it bothered me. It bothered me even more when PajamasMedia deleted the comment today. The comment was rude, and it was vile. But it wasn't obscene and it wasn't threatening. I feel like perhaps they cut it because they were embarrassed by having one of their readers say something so ugly about a little girl, but I can also accept that they chose to delete the comment because they felt responsible for exposing Schuyler to something like that.
But they're wrong. They're not responsible. I am.
This blog and the upcoming book are going to open the door for all sorts of experiences for Schuyler, and while I expect most of them to be positive, we're prepared for the occasional ugliness as well. But in the case of PajamasMedia, I chose to go back into an arena that I knew from experience was likely to be hostile, and I took her with me. My only excuse is that I didn't think it through, and once again I underestimated the capacity for people to become animals when sitting safely and anonymously behind their keyboards.
Schuyler is a warrior, and she gives her monster a thorough beatdown on a regular basis. I suspect that if she were old enough to understand the worst of what was being said about her online, she'd simply fire up her Big Box of Words and send a two word response (hint: not "happy birthday") before going off to live her life, loudly and unhesitatingly.
Nevertheless, I invited more monsters into her home, and for that, I can only say that I was wrong to do so, and I am very, very sorry.
I owe an apology. To Schuyler.
The first time I wrote an article for PajamasMedia.com, I wasn't completely aware of just how conservative their readership was, but if I had gotten a better feel for the site, I probably would have written for them anyway. My own liberal outlook doesn't mean I'm closed to conservatives and their beliefs. One of Schuyler's most adamant and consistent supporters, going back for years, is standing out on the very leading edge of the right wing, his toes dangling happily in the wind. Julie's parents are pretty conservative, and few people do more for Schuyler on a daily basis than they do. One of the themes of my first essay on PajamasMedia, and a big chunk of the book as well, addresses how wrong I was to prejudge the conservatives of Plano in the first place. I don't believe that the issues surrounding special needs parenting fall into partisan ideological areas, any more than the monsters that stalk these kids do so according to how their parents vote.
Nevertheless, after some of the personal comments left on that first essay, I wrote a second essay with some hesitation, and sure enough, the reactions were incrementally worse. I wasn't bothered by the personal attacks this time, either, although I did make an attempt to clarify a few things and also to defend myself against one particularly dishonest remark. (And a reminder to the kids: RESPONDING TO TROLLS IS ALWAYS ALWAYS ALWAYS A MISTAKE.) I was accused of being bitter and rude, as if the opponents of inclusion would happily invite our broken kids into their kids' classrooms, if only we'd just ask politely. I was accused of ignoring the plight of kids whose problem is that they are too gifted for their public schools, which is absolutely true. I certainly don't oppose the same kinds of programs for exceptionally gifted children as for those with disabilities. Not one bit. Why would I? It's simply not my fight, and it's not an issue that I know much about, so I didn't take it on. And best of all, I was even accused on one site of being a wealthy, pretentious snob, mostly because I have a hyphenated last name. Everyone knows that hyphens are plated in gold. I keep mine in a special vault.
But when someone posted at length last night about how my "feeble minded" child was destroying the schools for the rest of the kids, it bothered me. It bothered me even more when PajamasMedia deleted the comment today. The comment was rude, and it was vile. But it wasn't obscene and it wasn't threatening. I feel like perhaps they cut it because they were embarrassed by having one of their readers say something so ugly about a little girl, but I can also accept that they chose to delete the comment because they felt responsible for exposing Schuyler to something like that.
But they're wrong. They're not responsible. I am.
This blog and the upcoming book are going to open the door for all sorts of experiences for Schuyler, and while I expect most of them to be positive, we're prepared for the occasional ugliness as well. But in the case of PajamasMedia, I chose to go back into an arena that I knew from experience was likely to be hostile, and I took her with me. My only excuse is that I didn't think it through, and once again I underestimated the capacity for people to become animals when sitting safely and anonymously behind their keyboards.
Schuyler is a warrior, and she gives her monster a thorough beatdown on a regular basis. I suspect that if she were old enough to understand the worst of what was being said about her online, she'd simply fire up her Big Box of Words and send a two word response (hint: not "happy birthday") before going off to live her life, loudly and unhesitatingly.
Nevertheless, I invited more monsters into her home, and for that, I can only say that I was wrong to do so, and I am very, very sorry.
December 8, 2007
You say it's your birthday
I've written another essay over at PajamasMedia, adapted from a recent blog entry on inclusion. Go check it out, since the comments might just end up having some schadenfreude value, if my last essay over there is any indication.
It's worth pointing out that while this is an issue which Julie and I are always ready to take up, it's one that Schuyler never faces, not directly. I'm not even sure if she realizes that there are people out there that don't want her around them, or their kids. Schuyler turns eight in two weeks, which is certainly old enough to understand that people can be dicks when you're different. Largely because of her family and her teachers and friends who take up that fight on her behalf, however, Schuyler strides forward largely unhindered, and for now she seems unaware that it could be any other way for her.
If you've ever watched curling (and really, who hasn't?), imagine Schuyler as the player who throws the stone, and the rest of us out there with our little brooms, clearing the ice for her. (Wait, or perhaps she's the stone in this metaphor. That seems unflattering, now that I think of it.)
Today is a double birthday whammy for us. It's Julie's actual birthday (for which I set her alarm clock stereo to play this poignant musical tribute this morning), but we're also having a joint birthday party for Schuyler and her best friend from her Box Class today. It's causing all sorts of happy confusion for her, but I'm sure it'll all sort itself out, and by the time her actual birthday rolls around, Schuyler will be ready to do it all over again.
(I got her a pterodactyl, by the way. She's digging pterodactyls these days, like only a dainty little girl can.)
The interesting thing about this birthday party is that when Schuyler and her friend get around neurotypical kids (and there'll be a lot of them at this party, maybe half the total number), they tend to blow them off and ignore them in favor of their own little world, one in which they communicate with either their devices or their own secret little language of Martian and special sign language. When Schuyler and her friends get together, inclusion gets turned on its head.
Which I find to be strangely satisfying, speaking of schadenfreude.
It's worth pointing out that while this is an issue which Julie and I are always ready to take up, it's one that Schuyler never faces, not directly. I'm not even sure if she realizes that there are people out there that don't want her around them, or their kids. Schuyler turns eight in two weeks, which is certainly old enough to understand that people can be dicks when you're different. Largely because of her family and her teachers and friends who take up that fight on her behalf, however, Schuyler strides forward largely unhindered, and for now she seems unaware that it could be any other way for her.
If you've ever watched curling (and really, who hasn't?), imagine Schuyler as the player who throws the stone, and the rest of us out there with our little brooms, clearing the ice for her. (Wait, or perhaps she's the stone in this metaphor. That seems unflattering, now that I think of it.)
Today is a double birthday whammy for us. It's Julie's actual birthday (for which I set her alarm clock stereo to play this poignant musical tribute this morning), but we're also having a joint birthday party for Schuyler and her best friend from her Box Class today. It's causing all sorts of happy confusion for her, but I'm sure it'll all sort itself out, and by the time her actual birthday rolls around, Schuyler will be ready to do it all over again.
(I got her a pterodactyl, by the way. She's digging pterodactyls these days, like only a dainty little girl can.)
The interesting thing about this birthday party is that when Schuyler and her friend get around neurotypical kids (and there'll be a lot of them at this party, maybe half the total number), they tend to blow them off and ignore them in favor of their own little world, one in which they communicate with either their devices or their own secret little language of Martian and special sign language. When Schuyler and her friends get together, inclusion gets turned on its head.
Which I find to be strangely satisfying, speaking of schadenfreude.
December 4, 2007
Stalkerpalooza '08: Lone Star Edition
For those of you living here in the fine, fine Republic, I am happy to announce the dates and details of my Texas book tour. Details can be found over here, but I'll be appearing in Plano, Dallas, Arlington, Houston, Austin and San Antonio.
I know it's early yet, but I wanted to give any deranged readers time to make room in their freezers for my head.
I share because I care.
(Seventy-six days and counting...)
---
UPDATE: Look, I got a write-up in Unfair Park, the blog affiliated with the Dallas Observer. The Observer is the weekly alternative paper in the Dallas area, and I've been reading it since I was in college, back when former Dallas mayor Laura Miller was a troublemaking Observer reporter. Showing up on the blog was a happy surprise.
I know it's early yet, but I wanted to give any deranged readers time to make room in their freezers for my head.
I share because I care.
(Seventy-six days and counting...)
---
UPDATE: Look, I got a write-up in Unfair Park, the blog affiliated with the Dallas Observer. The Observer is the weekly alternative paper in the Dallas area, and I've been reading it since I was in college, back when former Dallas mayor Laura Miller was a troublemaking Observer reporter. Showing up on the blog was a happy surprise.
December 3, 2007
November 29, 2007
Also available with the kung-fu grip
Living our lives in such a public way, even before the book, has occasionally led to some interesting and unique experiences, mostly centering around Schuyler. She gets to people, she emotionally affects people out there who never meet her except through my writing, and they express that connection in a variety of artistic ways. I can't even begin to tell you just how cool that can be.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
November 28, 2007
Harvey does not in fact want to eat you
As an ugly American, I haven't heard of any of the parties involved, including Heat Magazine, but the sentiments are familiar. Make fun of a kid with a disability, get called out for it, issue a heartfelt apology, hope that people start buying your product again.
Heat magazine apologises to Jordan for using disabled son on sticker.
I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.
Heat magazine apologises to Jordan for using disabled son on sticker.
I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.
November 26, 2007
Thirty-ten
You know, I can't complain too much about this birthday. I mean, this is the year my book comes out, after all, plus I'm still alive, having managed to avoid eating or drinking myself to death or being killed by internet stalkers. My hair is graying a little and thinning a little, but not too much of either.
Still, though.
November 20, 2007
November 19, 2007
I got some love
I got my first review, and I'm very pleased with it. Kirkus Reviews is an industry trade publication, available to libraries, bookstores and their buyers, magazines, media, etc. An article in the New York Times a few years ago referred to Kirkus as "a sort of Consumer Reports for the book publishing industry", and an appearance there can lead to other reviews, media attention, and general fancy pantsedness.
I'm just happy that the word "crap" doesn't appear anywhere within.
---
Kirkus Reviews
12/1/07
Rummel-Hudson, Robert
SCHUYLER’S MONSTER: A Father’s Journey with His Wordless Daughter
The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.
After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.
Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.
I'm just happy that the word "crap" doesn't appear anywhere within.
---
Kirkus Reviews
12/1/07
Rummel-Hudson, Robert
SCHUYLER’S MONSTER: A Father’s Journey with His Wordless Daughter
The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.
After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.
Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.
Dancing away the monster
Excerpt: "Ballerina dreams: A True Story"
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
November 17, 2007
Because "separate but equal" worked out so well the first time...
The following was posted on another site, in response to this. While it's unusually blunt, it nevertheless represents a viewpoint that I've heard many times before, in some form or another.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
Every special ed kid costs schools more money. They are incredibly expensive. Wealthy parents get lawyers and game the system for millions, and all the rest of the kids get inadequate educations that still cost more money.
They should be removed from the system and their education funded differently. Public schools should be reserved for the "neurotypical".
That doesn't mean they shouldn't receive funding; it should just come from a different pool of money–health care, probably.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
November 15, 2007
Sometimes it's not monsters that we fight
From the CCN website (which I usually visit for the guilty pleasure of reading about people being eaten by alligators and sharks and bears):
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
Tell me about it.
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
"Parents of children with severe disabilities are often the experts on their children. They're with them all the time."
The trick here, she says, is to stand firm, even when you know you're annoying the doctor.
"You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly. For example, Green could have asked why the doctor didn't want to use one of the other potent antibiotics.
Rackner says patients can keep in mind stock phrases they can use to make the conversations easier.
For example, she says, one way Green could have started the conversation is: "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7."
Tell me about it.
New Nomads
I wrote a little somethin' somethin' about special needs parenting for PajamasMedia, called The New Nomads: Families in Search of Special Education. Go check it out and spread the love.
Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.
---
Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...
Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.
---
Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...
November 14, 2007
I have choices!
So what is the thing that I should spend time fretting about today? The determination by the dealership that Julie's car is officially dead (turning us into a one-car family, with me working an hour away from Plano), or the fun fact that I do believe I am getting another kidney stone?
Decisions, decisions!
Decisions, decisions!
November 12, 2007
"Paths of Glory"
I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.
You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.
However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.
I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.
Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.
I did not receive a response. I did not require one.
-----
Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com
I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.
Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.
Robert Rummel-Hudson
Plano, TX
Money concerns force DSO to drop concert
Britten's 'Requiem' 'very expensive'
One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.
"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."
You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.
However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.
I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.
Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.
I did not receive a response. I did not require one.
-----
Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com
I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.
Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.
Robert Rummel-Hudson
Plano, TX
November 8, 2007
Monster Paw
It's been something of a Fancy Pants Author Week, which is always a nice alternative to Tragedy Dad Week (which I haven't had many of in a long time, knock on maybe-fake Ikea wood), Sickly Diabetic Week (also not too frequent now, knock on my pancreas) or Poverty Schmuck Week (well, that's more of a chronic condition than a single week). I anticipate having a Rough Thirty-tenth Birthday Week soon, but I'm not ready to face that just yet so we will speak of it no more.
The latest on the book is this. The bad news, not entirely unexpected, is that aside from a possible Texas schedule, there is not a book tour in the works. I won't lie to you; I'm disappointed, although for entirely personal reasons. The fancy pants book tour is part of every writer's publication fantasy. It's right up there with imagining the girl who broke your heart in high school, now sitting in her trailer with her six kids, watching you share a tender moment with Oprah on her Rent-to-Own television. (I have never claimed not to have Issues.)
But the publishing world is changing, and effective marketing is happening in other places. Radio, television, and especially the Internet are far more effective media tools, and St. Martin's thinks (and I agree) that because of my years of online troublemaking and exposure, this book is uniquely placed to thrive in this shiny new media world. Book tours are expensive, and their effectiveness in promoting books or authors is questionable. Also, it's worth pointing out that since I began this whole journey over a year ago, this is actually the first time I've wanted something from St. Martin's that they've not given me. I've been treated like a pretty princess so far, and I'd be a jerk to turn all Veruca Salt on them now.
Mostly, though, I just thought it sounded like fun.
There are some other things coming down the pike, however, all of which I will share as they firm up. (One of them, a magazine feature, might just make you poop your panties. It did me, at least metaphorically.) And if you live in Texas, I might be coming to your town, by golly, since we're hoping to put together a swing through the Best of the Big Red State. The first reading/signing will take place right here in Plano. Discerning stalkers will want to come to this one, as my whole family will be there. (Trust me, it's much better than just showing up at my home with your kids so they can make friends with Schuyler. And I'm not even making that up.) I also hear that the PR person running the event at the store is extra swell.
It's funny, dealing with all the craziness that accompanies this book, because in a way, it feels like distraction, like taking the monster and dressing it up in a tuxedo. Perhaps it will sing "Puttin' on the Ritz" for us at the signing. I've always maintained that this book was something of a monkey paw, in that it represents a long-time dream for me, but on a subject matter that I would obviously have never picked in a thousand years. But as this process continues, I am making peace with it. Sometimes, I am learning, the book picks the author.
My publicist needed some current information on polymicrogyria, so I contacted the doctors who are in the know. As I look through the information they sent me, all the old feelings come rushing back, that dread of the monster that we felt the first time we were introduced. It's weird, looking at it in ugly medical terms, the same ones that scared us so badly four years ago. (Can it really have been that long?) Much of it is written in medicalese that makes little sense to me. But some of it still jumps off the page.
"Developmental language disorder can be associated with BPP (bilateral perisylvian polymicrogyria), and its severity depends on the extent of the cortical damage. Patients with marked dysarthria are often labelled as severely retarded, although they may have normal comprehension."
...
"Most patients develop multiple seizure types, and seizure control is poor in more than half the cases. Frequent seizures may aggravate speech dysfunction and result in progressive deterioration. In patients with severe and disabling seizures, especially drop attacks, callosotomy can be considered."
...
"Epilepsy was found in almost 90% of cases..."
I'm ecstatic to have this book coming out; we all are, especially Schuyler. (Ask her about it the next time you're stalking us and just watch her face.) But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes.
I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one.
The latest on the book is this. The bad news, not entirely unexpected, is that aside from a possible Texas schedule, there is not a book tour in the works. I won't lie to you; I'm disappointed, although for entirely personal reasons. The fancy pants book tour is part of every writer's publication fantasy. It's right up there with imagining the girl who broke your heart in high school, now sitting in her trailer with her six kids, watching you share a tender moment with Oprah on her Rent-to-Own television. (I have never claimed not to have Issues.)
But the publishing world is changing, and effective marketing is happening in other places. Radio, television, and especially the Internet are far more effective media tools, and St. Martin's thinks (and I agree) that because of my years of online troublemaking and exposure, this book is uniquely placed to thrive in this shiny new media world. Book tours are expensive, and their effectiveness in promoting books or authors is questionable. Also, it's worth pointing out that since I began this whole journey over a year ago, this is actually the first time I've wanted something from St. Martin's that they've not given me. I've been treated like a pretty princess so far, and I'd be a jerk to turn all Veruca Salt on them now.
Mostly, though, I just thought it sounded like fun.
There are some other things coming down the pike, however, all of which I will share as they firm up. (One of them, a magazine feature, might just make you poop your panties. It did me, at least metaphorically.) And if you live in Texas, I might be coming to your town, by golly, since we're hoping to put together a swing through the Best of the Big Red State. The first reading/signing will take place right here in Plano. Discerning stalkers will want to come to this one, as my whole family will be there. (Trust me, it's much better than just showing up at my home with your kids so they can make friends with Schuyler. And I'm not even making that up.) I also hear that the PR person running the event at the store is extra swell.
It's funny, dealing with all the craziness that accompanies this book, because in a way, it feels like distraction, like taking the monster and dressing it up in a tuxedo. Perhaps it will sing "Puttin' on the Ritz" for us at the signing. I've always maintained that this book was something of a monkey paw, in that it represents a long-time dream for me, but on a subject matter that I would obviously have never picked in a thousand years. But as this process continues, I am making peace with it. Sometimes, I am learning, the book picks the author.
My publicist needed some current information on polymicrogyria, so I contacted the doctors who are in the know. As I look through the information they sent me, all the old feelings come rushing back, that dread of the monster that we felt the first time we were introduced. It's weird, looking at it in ugly medical terms, the same ones that scared us so badly four years ago. (Can it really have been that long?) Much of it is written in medicalese that makes little sense to me. But some of it still jumps off the page.
"Developmental language disorder can be associated with BPP (bilateral perisylvian polymicrogyria), and its severity depends on the extent of the cortical damage. Patients with marked dysarthria are often labelled as severely retarded, although they may have normal comprehension."
...
"Most patients develop multiple seizure types, and seizure control is poor in more than half the cases. Frequent seizures may aggravate speech dysfunction and result in progressive deterioration. In patients with severe and disabling seizures, especially drop attacks, callosotomy can be considered."
...
"Epilepsy was found in almost 90% of cases..."
I'm ecstatic to have this book coming out; we all are, especially Schuyler. (Ask her about it the next time you're stalking us and just watch her face.) But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes.
I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one.
November 5, 2007
Does the cat-building make it science fiction?
Well, it's November and NaNoWriMo time, which explains why everyone seems to be writing about writing this month. (My favorites are the people who spend time on their blogs writing about not being able to write, or even better, not having enough time to write.) While I don't really have anything to add, I thought it might be fun to share something that was sent home by Schuyler's teacher the other day. I particularly like how she's working her real world experience into her fiction.
Because after genetically engineering a cat, nothing hits the spot like a little pizza...
Once there was a scarecrow. He went to New York with his best friend Schuyler. Schuyler and the scarecrow played outside in the sandbox. Schuyler built a doll. The scarecrow made a cat. Schuyler and the scarecrow eat a pizza.
Because after genetically engineering a cat, nothing hits the spot like a little pizza...
November 1, 2007
All Hallows Eve for Monsters, broken and otherwise
I had a pretty good Halloween, as evidenced by what arrived from Fed-Ex:
(I've been coveting them like the Gollum with my Precioussssss...)
As for Schuyler, she had a great time as well, like she does every Halloween.
This year, she opted for a sort of vampire-y, Goth-y chick look. The tattoos were a gift from a cool friend when we were in New York, and it would be no exaggeration to say that she loves them with something bordering on obsession. The one on her face? Still there when she went to school this morning. I suspect she's the only girl at her conservative little Plano school with art on her face today, although I also suspect that she's the envy of every little Hannah Montana-wannabe in her class.
Even though it's a sort of punky look, we agreed to this costume for the simple reason that it was a long dress, with sleeves and no bare belly. If you're the parent of a little girl, you know just how hard it is to find a costume that isn't either goofy ("Look, I'm a Care Bear!") or something from the Li'l Prostitutes Collection(TM). Half the girls we saw looked like they were part of a child molester sting operation. If looking at an eight year-old with low rise hot pants and a bare midriff doesn't make you uncomfortable, then you might want to check yourself in for treatment somewhere.
And just like that, railing against the wicked ways of Kids These Days, I became an old man. Just in time for... that birthday, too.
This year, Schuyler trick-or-treated with her best friend from her Box Class. I don't know why we never did it before. In years past, Schuyler either did the candy rounds with a little neurotypical friend of hers whom she loved unconditionally and heartbreakingly but who was frankly a toxic little bully to her, or she went by herself, accompanied only by her fussy, boring, smelly old parents.
This year, tearing from house to house with her best friend, laughing hard and communicating wordlessly, there was no imbalance between a talking child and her, no bossy kid treating her like some sort of plaything or mascot. There was only fun, and crazy amounts of sugar, and scary displays to scream at. They had the time of their lives, and not only did not of the people handing out candy have a problem with a mute little goth girl and her Supergirl friend, I'm not actually sure that anyone noticed anything different about them.
It's extremely important for Schuyler to present her difference to the world with unflinching courage and without hesitation or apology. Nevertheless, much of the time, maybe even most of the time, she moves across the face of this planet incognito, her freak flag flying but unnoticed, like a visiting extraterrestrial who walks among us.
In that sense, I sometimes wish that every day could be Halloween. For Schuyler, in a way, every day is.
(I've been coveting them like the Gollum with my Precioussssss...)
As for Schuyler, she had a great time as well, like she does every Halloween.
This year, she opted for a sort of vampire-y, Goth-y chick look. The tattoos were a gift from a cool friend when we were in New York, and it would be no exaggeration to say that she loves them with something bordering on obsession. The one on her face? Still there when she went to school this morning. I suspect she's the only girl at her conservative little Plano school with art on her face today, although I also suspect that she's the envy of every little Hannah Montana-wannabe in her class.
Even though it's a sort of punky look, we agreed to this costume for the simple reason that it was a long dress, with sleeves and no bare belly. If you're the parent of a little girl, you know just how hard it is to find a costume that isn't either goofy ("Look, I'm a Care Bear!") or something from the Li'l Prostitutes Collection(TM). Half the girls we saw looked like they were part of a child molester sting operation. If looking at an eight year-old with low rise hot pants and a bare midriff doesn't make you uncomfortable, then you might want to check yourself in for treatment somewhere.
And just like that, railing against the wicked ways of Kids These Days, I became an old man. Just in time for... that birthday, too.
This year, Schuyler trick-or-treated with her best friend from her Box Class. I don't know why we never did it before. In years past, Schuyler either did the candy rounds with a little neurotypical friend of hers whom she loved unconditionally and heartbreakingly but who was frankly a toxic little bully to her, or she went by herself, accompanied only by her fussy, boring, smelly old parents.
This year, tearing from house to house with her best friend, laughing hard and communicating wordlessly, there was no imbalance between a talking child and her, no bossy kid treating her like some sort of plaything or mascot. There was only fun, and crazy amounts of sugar, and scary displays to scream at. They had the time of their lives, and not only did not of the people handing out candy have a problem with a mute little goth girl and her Supergirl friend, I'm not actually sure that anyone noticed anything different about them.
It's extremely important for Schuyler to present her difference to the world with unflinching courage and without hesitation or apology. Nevertheless, much of the time, maybe even most of the time, she moves across the face of this planet incognito, her freak flag flying but unnoticed, like a visiting extraterrestrial who walks among us.
In that sense, I sometimes wish that every day could be Halloween. For Schuyler, in a way, every day is.
October 28, 2007
Insufficient words
As I'm writing this, Schuyler is sitting in the seat next to me on the flight from New York back to smelly old Texas. A few hours ago, we left the home of my agent who, after being charmed by Schuyler and hearing about our interesting lodgings in a part of Brooklyn apparently untouched by the hipster invasion, invited us to stay with her. It was a beautiful home at the top of a charming building in a perfect little neighborhood, and we were made to feel like family. Schuyler loved my agent and her husband, and if we've ever had a better time than we had on this trip, I can't remember when.
There are all the actual events to report on, of course. Schuyler loved the American Museum of Natural History, as we figured she would. She abducted my agent's assistant to be her personal plaything while we explored the museum. Schuyler also managed to lose her mind in FAO Schwarz for a good three hours before picking out a toy that she saw during her first five minutes in the store. The friends of mine that she met on this trip were instantly her own best friends, and while she became a little wild and overstimulated by the city now and again, she nevertheless remained cheerful and wickedly charming. I've never been prouder of her, and that's saying a lot.
Our meeting with St. Martin's Press went very well, as I figured it would. Schuyler charmed everyone at what ended up being a very well-attended meeting, including an appearance by the publisher herself, who shook Schuyler's little hand like she would any professional author's and expressed her own personal interest in and excitement for the book. Those of you who have asked about a book tour may be disappointed to learn that there are not presently plans for an actual tour, but there are other possibilities afoot that might land me in your town at some point. Besides (and this is probably shameless even for me), publishers are known to quickly put together a tour if a book has strong early sales and good word of mouth. So, you know, I'm just saying.
I also got to see an actual bound galley of my book. Which was, to be totally uncool, very cool.
Another thing that I think I can mention now (and enough people at SMP admitted to reading the blog that I assume I'll get a quick, frantic email from someone if I'm not supposed to say anything yet) is that in February or March, it looks like Schuyler's Monster will be featured in Wondertime, a fun and really well-written, hipster-y parenting magazine that I've liked for a while. (The first four issues they put out a few years ago included a series of articles about a little boy with a similar speech disorder as Schuyler's, and it was well-done enough to catch and keep my attention.) Wondertime is published by Disney, so it should be easy enough to find. I'm in league with The Mouse now. I assume they won't pick a part where I sound like a vulgar yokel. Good luck with that, Wondertime.
I had some fancy pants author moments, but mostly, I was a dad on this trip. More than that, I think Schuyler and I became better friends this week, sharing experiences that required few words. After our meeting at St. Martin's, I took her for a walk towards the Empire State Building, site of her hero's last stand against pesky bi-planes. About half a block away, I told her to close her eyes. I led her to the corner, got my camera in place, and then told her to open her eyes and look up. I thought I'd get a photo of her look of amazement. Instead, I captured a moment of pure, unbridled joy, a full-throated howl of recognition and challenge, as if she were ready to take up the battle herself. She did the same thing the first time she saw King Kong, when he leapt out of the jungle to save his girl from the dinosaurs. It is easily my favorite photo of the trip. It might be my favorite ever.
I watched Schuyler as she took in the city, observing as she attempted to make friends with other riders on the subway (with admittedly mixed results) and as she yearned to help a man passed out in the street, sadly telling me about him for the next three blocks. She told me all about what she was seeing, things that amazed her such as looking down on buildings with gardens on their roofs. During the many uninterrupted hours we shared, she asked me questions about my own father that she'd never asked before, and listened earnestly as I tried to explain what it means when someone dies. We became closer than ever, closer than I thought possible, in ways that the parents of neurotypical kids might take for granted but which felt like gifts to me.
I saw the city through Schuyler's eyes and was never bored, and if I thought this trip was going to be about what Schuyler got out of it, about what she stood to learn from the experience, I was as wrong as I've ever been in my life.
I'm trying to explain what this trip meant to me, and to Schuyler, but I'm failing miserably. And perhaps that's okay. The best parts, the ones I can't explain very well, they belong to us anyway.
There are all the actual events to report on, of course. Schuyler loved the American Museum of Natural History, as we figured she would. She abducted my agent's assistant to be her personal plaything while we explored the museum. Schuyler also managed to lose her mind in FAO Schwarz for a good three hours before picking out a toy that she saw during her first five minutes in the store. The friends of mine that she met on this trip were instantly her own best friends, and while she became a little wild and overstimulated by the city now and again, she nevertheless remained cheerful and wickedly charming. I've never been prouder of her, and that's saying a lot.
Our meeting with St. Martin's Press went very well, as I figured it would. Schuyler charmed everyone at what ended up being a very well-attended meeting, including an appearance by the publisher herself, who shook Schuyler's little hand like she would any professional author's and expressed her own personal interest in and excitement for the book. Those of you who have asked about a book tour may be disappointed to learn that there are not presently plans for an actual tour, but there are other possibilities afoot that might land me in your town at some point. Besides (and this is probably shameless even for me), publishers are known to quickly put together a tour if a book has strong early sales and good word of mouth. So, you know, I'm just saying.
I also got to see an actual bound galley of my book. Which was, to be totally uncool, very cool.
Another thing that I think I can mention now (and enough people at SMP admitted to reading the blog that I assume I'll get a quick, frantic email from someone if I'm not supposed to say anything yet) is that in February or March, it looks like Schuyler's Monster will be featured in Wondertime, a fun and really well-written, hipster-y parenting magazine that I've liked for a while. (The first four issues they put out a few years ago included a series of articles about a little boy with a similar speech disorder as Schuyler's, and it was well-done enough to catch and keep my attention.) Wondertime is published by Disney, so it should be easy enough to find. I'm in league with The Mouse now. I assume they won't pick a part where I sound like a vulgar yokel. Good luck with that, Wondertime.
I had some fancy pants author moments, but mostly, I was a dad on this trip. More than that, I think Schuyler and I became better friends this week, sharing experiences that required few words. After our meeting at St. Martin's, I took her for a walk towards the Empire State Building, site of her hero's last stand against pesky bi-planes. About half a block away, I told her to close her eyes. I led her to the corner, got my camera in place, and then told her to open her eyes and look up. I thought I'd get a photo of her look of amazement. Instead, I captured a moment of pure, unbridled joy, a full-throated howl of recognition and challenge, as if she were ready to take up the battle herself. She did the same thing the first time she saw King Kong, when he leapt out of the jungle to save his girl from the dinosaurs. It is easily my favorite photo of the trip. It might be my favorite ever.
I watched Schuyler as she took in the city, observing as she attempted to make friends with other riders on the subway (with admittedly mixed results) and as she yearned to help a man passed out in the street, sadly telling me about him for the next three blocks. She told me all about what she was seeing, things that amazed her such as looking down on buildings with gardens on their roofs. During the many uninterrupted hours we shared, she asked me questions about my own father that she'd never asked before, and listened earnestly as I tried to explain what it means when someone dies. We became closer than ever, closer than I thought possible, in ways that the parents of neurotypical kids might take for granted but which felt like gifts to me.
I saw the city through Schuyler's eyes and was never bored, and if I thought this trip was going to be about what Schuyler got out of it, about what she stood to learn from the experience, I was as wrong as I've ever been in my life.
I'm trying to explain what this trip meant to me, and to Schuyler, but I'm failing miserably. And perhaps that's okay. The best parts, the ones I can't explain very well, they belong to us anyway.
October 23, 2007
New York, Old Navy
So is it real irony or Alanis Morissette irony that Mister Fancy Pants Author forgot to pack his pants for his meeting with St. Martin's Press?
Huh. I guess I know what our first stop is going to be, once we get out of Brooklyn...
Huh. I guess I know what our first stop is going to be, once we get out of Brooklyn...
October 19, 2007
A question and a chuckle for you
UPDATE:Okay, I closed the poll a little early since I needed to print up the results, and they were running pretty consistently. Thank you, and just to let you know how much I appreciate your help, here's an amusing and wildly unattractive photo of me.
(And before you feel inclined to say anything "helpful" about my new Ahab look, I did in fact finish shaving it off after taking this photo. And, you know, after cracking myself up. I am easily amused.)
(And before you feel inclined to say anything "helpful" about my new Ahab look, I did in fact finish shaving it off after taking this photo. And, you know, after cracking myself up. I am easily amused.)
October 17, 2007
Eagerly awaiting the revolution
Sometimes I get email from old skool readers asking why I don't write about politics anymore.
I don't know. I guess I usually just find it easier to stick my finger down my throat...
I don't know. I guess I usually just find it easier to stick my finger down my throat...
October 15, 2007
A Father's Journey with His Wordless Daughter
In a week, we head off to New York City, and Schuyler is getting excited. She took us shopping for a nice outfit for our St. Martin's meeting and had me add some terms to her Big Box of Words (like "sea monster", "mermaid" and "New York City"). We even stopped by the still-frightening Libby Lu for another set of the little face jewel sticker thingies so she can dazzle the big city.
I'm a little nervous about this trip, of course. Despite the positive experience I've had all along with St. Martin's Press, I still worry about making an ass out of myself. It's a silly fear for a number of reasons, not the least of which is that they already read my book, which is full of stories that don't necessarily make me look like the nicest, smartest or most emotionally stable person in the world, and their response was "Let's publish this, by golly!" They already know the embarrassing parts.
I also worry about dropping the ball and losing Schuyler on the streets of New York. This is also sort of silly since anyone who has ever spent time with the two of us can tell you that I am a fussy and twitchy father when I am flying as solo parent with Schuyler. When Julie is there, we spilt the freaking out duties, but Julie is entering her busy season at the book store (where, by the way, she has gotten permission to hold my very first appearance, which feels exactly right) an won't be with us. It's just me and Schuyler and all my worries.
When she was a baby, I had an irrational fear of taking her on the second floor of a mall, after all. I was convinced that some lunatic was going to run up to her stroller, grab her and toss her over the railing. I also thought big dogs would run up in the park and run off with her, wiggling sadly in their big slobbery jaws. I don't expect any New York misadventure to catch me off-guard, although just typing that sent a little wave of anxiety through me, heightening the spaz factor up another notch or two.
For Schuyler, this trip is about building memories for her. I have no idea how she'll feel about this book when she's older, although from what I know of her personality so far, I suspect she'll be more interested in the possibilities of helping other people than in whatever privacy issues might arise from the book. She's excited about it now; ask her about the book, and she'll either refer to it on her BBoW as "my monster" or "schuylers monster", which is especially fun since I don't believe I've ever referred to it by name to her. She's picked that up on her own.
But no matter how she feels about it down the road (perhaps she'll write the sequel, Schuyler's Dumbass: The Stuff My Father Got Wrong), at the very least, she will one day be able to look back and remember that her father's book gave her the opportunity, however brief, to step out of her monster's shadow and walk the streets of Manhattan like she owned the place. She'll have memories of the museums and the energy of the city and seeing the site of King Kong's last stand. She'll be able to remember going into the Flatiron Building to talk to fancy pants publishing folks about HER book like the literary figure she is.
She's earned this. Well, I think we both have, really.
I'm a little nervous about this trip, of course. Despite the positive experience I've had all along with St. Martin's Press, I still worry about making an ass out of myself. It's a silly fear for a number of reasons, not the least of which is that they already read my book, which is full of stories that don't necessarily make me look like the nicest, smartest or most emotionally stable person in the world, and their response was "Let's publish this, by golly!" They already know the embarrassing parts.
I also worry about dropping the ball and losing Schuyler on the streets of New York. This is also sort of silly since anyone who has ever spent time with the two of us can tell you that I am a fussy and twitchy father when I am flying as solo parent with Schuyler. When Julie is there, we spilt the freaking out duties, but Julie is entering her busy season at the book store (where, by the way, she has gotten permission to hold my very first appearance, which feels exactly right) an won't be with us. It's just me and Schuyler and all my worries.
When she was a baby, I had an irrational fear of taking her on the second floor of a mall, after all. I was convinced that some lunatic was going to run up to her stroller, grab her and toss her over the railing. I also thought big dogs would run up in the park and run off with her, wiggling sadly in their big slobbery jaws. I don't expect any New York misadventure to catch me off-guard, although just typing that sent a little wave of anxiety through me, heightening the spaz factor up another notch or two.
For Schuyler, this trip is about building memories for her. I have no idea how she'll feel about this book when she's older, although from what I know of her personality so far, I suspect she'll be more interested in the possibilities of helping other people than in whatever privacy issues might arise from the book. She's excited about it now; ask her about the book, and she'll either refer to it on her BBoW as "my monster" or "schuylers monster", which is especially fun since I don't believe I've ever referred to it by name to her. She's picked that up on her own.
But no matter how she feels about it down the road (perhaps she'll write the sequel, Schuyler's Dumbass: The Stuff My Father Got Wrong), at the very least, she will one day be able to look back and remember that her father's book gave her the opportunity, however brief, to step out of her monster's shadow and walk the streets of Manhattan like she owned the place. She'll have memories of the museums and the energy of the city and seeing the site of King Kong's last stand. She'll be able to remember going into the Flatiron Building to talk to fancy pants publishing folks about HER book like the literary figure she is.
She's earned this. Well, I think we both have, really.
October 10, 2007
My voice is my power...
This was put together by a tenacious group of teenagers who are much more significantly impaired than Schuyler but who use similar speech devices.
Produced by an AAC advocacy group in the UK called 1 Voice.
Produced by an AAC advocacy group in the UK called 1 Voice.
October 9, 2007
These should be Schuyler's monsters
A number of you have written to me to let me know about this, which is coming to Dallas at the end of the month. I saw a commercial for it on television this morning, and it looks amazing, in a "watch Schuyler's head explode" kind of way.
Tickets are not cheap, and this is one of those things that I suspect is much more effective when you're not sitting in the nosebleed seats. I'm trying to decide if we can afford this, especially coming off a no-doubt expensive trip to New York, but I suspect I'd kick myself for the rest of my life if I didn't take Schuyler to this, with her dinosaur love.
I mean, come on. Look at that.
---
UPDATE: We're going, woo!
When I showed Schuyler the video, her eyes got huge.
"Are they scary?" I asked.
"Yeah," she answered.
"Do you want to go see them in person?"
"Yeah!"
She's a thrill junkie.
Tickets are not cheap, and this is one of those things that I suspect is much more effective when you're not sitting in the nosebleed seats. I'm trying to decide if we can afford this, especially coming off a no-doubt expensive trip to New York, but I suspect I'd kick myself for the rest of my life if I didn't take Schuyler to this, with her dinosaur love.
I mean, come on. Look at that.
---
UPDATE: We're going, woo!
When I showed Schuyler the video, her eyes got huge.
"Are they scary?" I asked.
"Yeah," she answered.
"Do you want to go see them in person?"
"Yeah!"
She's a thrill junkie.
October 8, 2007
Transfiguration, at the mall
Schuyler was recently invited to a birthday party by one of the girls in her Box Class, and since Julie had to work, I was flying solo. No big deal, I do it all the time. The two of us are taking Manhattan like Muppets in a few weeks, after all. Birthday parties are cake, so to speak.
It wasn't until this morning, a few hours before the actual party, that I took note of the fact that this party was to be a Club Libby Lu party.
How to explain Club Libby Lu to the uninitiated? And unless you are a parent of a little girl between the ages of maybe five to twelve, or you're actually a little girl yourself (in which case you shouldn't be reading this blog, the creepy old fat man uses dirty words sometimes!), you are almost certainly uninitiated.
"Club Libby Lu. A special secret club for super fabulous girls can get makeovers parties, play games, get advice, and find really cool princess paraphernalia. It's a girl thing!" That's the company line.
There are plenty of dissenting opinions, such as this sort of horrifying article called "Glamour Babes" from the Washington Post. That's a scary article, and it left me with a sinking feeling in the pit of my stomach all day.
Despite my misgivings, I took Schuyler to the party anyway, because the time she spends with other kids outside of school is precious to her, particularly when it's with other kids with disabilities. Also, I would be there scowling menacingly at anyone who tried to dress my daughter as a crackwhore.
I'm not going to dispute the issues of Club Libby Lu as a concept, and I am sure that a lot of parents have a different experience than I did. But today, when the local Club Libby Lu found itself host to five little girls with varying degrees and types of disabilities, not a one of them capable of unassisted speech, the gum-smacking Hannah Montana clones working the party did something I'm not sure I was expecting.
The long version is that they dressed Schuyler and her friends in sassy glam rock outfits and put up their hair in trendy, hairspray-shellaqued styles. They made up the girls' faces and assisted them with creating bubblegum-smelling lip gloss and let them shower each other's heads and clothes with sparkle dust. (Schuyler took particular joy in putting a generous handful in my hair, too. Every time I move my head, the world in front of my face becomes a Disney movie special effect.) They ended the afternoon with a little dance party and a group photo. The Libby Lu staff laughed with these kids and listened to them jabber excitedly along every step of the experience, and if they were put off in any way by the fact that almost none of what was being said to them was intelligible, they did not let on even for a moment.
The short version? Club Libby Lu transformed five broken little girls into absolutely normal tween pop culture princesses, if only for an afternoon. And for that, I will never speak a word against them.
It wasn't until this morning, a few hours before the actual party, that I took note of the fact that this party was to be a Club Libby Lu party.
How to explain Club Libby Lu to the uninitiated? And unless you are a parent of a little girl between the ages of maybe five to twelve, or you're actually a little girl yourself (in which case you shouldn't be reading this blog, the creepy old fat man uses dirty words sometimes!), you are almost certainly uninitiated.
"Club Libby Lu. A special secret club for super fabulous girls can get makeovers parties, play games, get advice, and find really cool princess paraphernalia. It's a girl thing!" That's the company line.
There are plenty of dissenting opinions, such as this sort of horrifying article called "Glamour Babes" from the Washington Post. That's a scary article, and it left me with a sinking feeling in the pit of my stomach all day.
Despite my misgivings, I took Schuyler to the party anyway, because the time she spends with other kids outside of school is precious to her, particularly when it's with other kids with disabilities. Also, I would be there scowling menacingly at anyone who tried to dress my daughter as a crackwhore.
I'm not going to dispute the issues of Club Libby Lu as a concept, and I am sure that a lot of parents have a different experience than I did. But today, when the local Club Libby Lu found itself host to five little girls with varying degrees and types of disabilities, not a one of them capable of unassisted speech, the gum-smacking Hannah Montana clones working the party did something I'm not sure I was expecting.
The long version is that they dressed Schuyler and her friends in sassy glam rock outfits and put up their hair in trendy, hairspray-shellaqued styles. They made up the girls' faces and assisted them with creating bubblegum-smelling lip gloss and let them shower each other's heads and clothes with sparkle dust. (Schuyler took particular joy in putting a generous handful in my hair, too. Every time I move my head, the world in front of my face becomes a Disney movie special effect.) They ended the afternoon with a little dance party and a group photo. The Libby Lu staff laughed with these kids and listened to them jabber excitedly along every step of the experience, and if they were put off in any way by the fact that almost none of what was being said to them was intelligible, they did not let on even for a moment.
The short version? Club Libby Lu transformed five broken little girls into absolutely normal tween pop culture princesses, if only for an afternoon. And for that, I will never speak a word against them.
October 3, 2007
Stalker tip
If you find yourself wandering the streets of New York City any time between October 23rd and 27th, and you see a fat old man with a questionable beard and a cute little girl who talks like Stephen Hawkings, it just might be us, by golly.
Schuyler is excited, although I don't think she really remembers much about the city. She was only three years old the last time she was there, after all. That feels like a lifetime ago.
Aside from our date with monsters, our meetings with the fun folks at St. Martin's Press, and a visit to the Empire State Building (where, she informs me that unlike her hero, we shall ride to the top on the inside; she apparently understands that contrary to popular beliefs, it IS the planes that will get you), our plans are pretty wide open. Suggestions are always welcome.
Incidentally, hotel prices in New York City? Not funny. Not funny at all.
Schuyler is excited, although I don't think she really remembers much about the city. She was only three years old the last time she was there, after all. That feels like a lifetime ago.
Aside from our date with monsters, our meetings with the fun folks at St. Martin's Press, and a visit to the Empire State Building (where, she informs me that unlike her hero, we shall ride to the top on the inside; she apparently understands that contrary to popular beliefs, it IS the planes that will get you), our plans are pretty wide open. Suggestions are always welcome.
Incidentally, hotel prices in New York City? Not funny. Not funny at all.
October 1, 2007
Breakup
The end of a relationship can be hard, but it can also feel like a fresh, cool breeze on a sweltering day. Sometimes you get to the end of a relationship and wonder how it ever went on so long in the first place. Complacency is a powerful force, but when its bonds are finally shattered, the happiness you feel makes you realize just how bad things had become.
I got out of an abusive relationship this weekend. I broke up with Bank of America.
I received a check from my publisher on Saturday and took it to the bank to deposit it. I braced myself for trouble because it was an out-of-state check, and sure enough, I was told that there would be a hold on it while the funds cleared, and those funds wouldn't be available for TEN DAYS. Apparently Bank of America doesn't cotton to that new-fangled electronic gizmo banking, but instead prefers to put my check in a leather satchel and hang it on a post outside, to be picked up by the next Pony Express rider as he heads north through Indian Country on his way to New York.
I explained how this was uncool since any royalty payments I receive for this book (shut up, it could happen) will come this way, but the bank manager shut me down, and not even fake-bank politely, either. When I said that I was considering closing my account and opening a new one somewhere else, she said that these rules were FDIC regulations and would be the same at any bank I went to, so don't bother. Furthermore, if I used this particular check to start a new account somewhere else, there would be a 90-day waiting period before those funds became available.
"There's nothing you can do, little man," she said. (paraphrased) "Submit and go home."
So I walked out to my car, drove down the street to another bank (one that had come highly recommended by another writer for just this reason), and thirty minutes later, I had a new account. The funds will be available tomorrow or Wednesday.
I'm not going to kid myself. My new bank doesn't do business in order to help the common man and make the planet a nicer place to live. But I feel like I just broke up with a girl who was narcissistic and hateful and liked to stab me in the eye with a fork. If my new girlfriend turns out to be a crack addict or a boogereater, at least it'll be a new kind of anxiety. It's nice to change things up from time to time.
Have a nice life, Bank of America.
---
UPDATE, 10/3 - As good as their word, my new bank came through with my funds, and I even got a call just now from the bank manager to let me know. The funds actually became available before I've even received a debit card in the mail. Fancy!
I got out of an abusive relationship this weekend. I broke up with Bank of America.
I received a check from my publisher on Saturday and took it to the bank to deposit it. I braced myself for trouble because it was an out-of-state check, and sure enough, I was told that there would be a hold on it while the funds cleared, and those funds wouldn't be available for TEN DAYS. Apparently Bank of America doesn't cotton to that new-fangled electronic gizmo banking, but instead prefers to put my check in a leather satchel and hang it on a post outside, to be picked up by the next Pony Express rider as he heads north through Indian Country on his way to New York.
I explained how this was uncool since any royalty payments I receive for this book (shut up, it could happen) will come this way, but the bank manager shut me down, and not even fake-bank politely, either. When I said that I was considering closing my account and opening a new one somewhere else, she said that these rules were FDIC regulations and would be the same at any bank I went to, so don't bother. Furthermore, if I used this particular check to start a new account somewhere else, there would be a 90-day waiting period before those funds became available.
"There's nothing you can do, little man," she said. (paraphrased) "Submit and go home."
So I walked out to my car, drove down the street to another bank (one that had come highly recommended by another writer for just this reason), and thirty minutes later, I had a new account. The funds will be available tomorrow or Wednesday.
I'm not going to kid myself. My new bank doesn't do business in order to help the common man and make the planet a nicer place to live. But I feel like I just broke up with a girl who was narcissistic and hateful and liked to stab me in the eye with a fork. If my new girlfriend turns out to be a crack addict or a boogereater, at least it'll be a new kind of anxiety. It's nice to change things up from time to time.
Have a nice life, Bank of America.
---
UPDATE, 10/3 - As good as their word, my new bank came through with my funds, and I even got a call just now from the bank manager to let me know. The funds actually became available before I've even received a debit card in the mail. Fancy!
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