The entire Wondertime Magazine story has been posted online, albeit without the very striking and beautiful layout that you'll see in the print version when the March issue is released. It really does look great, so I hope you'll pick up a copy when it comes out.
The article is based on part of the book itself, although significantly condensed, so consider this something of a sneak peek of the book. Having said that, I feel like I ought to say a little bit about the subject matter, which might surprise some of you.
When I was told which chapter Wondertime wanted to run excerpts from, I was initially hesitant, for reasons that will become clear pretty quickly once you start reading. I mean, none of it is a secret (or won't be much longer), and if Julie and I didn't want it out there, then putting in the book would be a pretty stupid idea. We thought it was important to talk about it, though. The things we went through are the same things that most parents of broken children experience in some form or another, and pretending we were perfect people wouldn't have just been dishonest. It would have been boring as well.
When I talked to the editor at Wondertime, she expressed the same thoughts, which is why they wanted to feature that particular chapter in the first place. They felt that the problems of special needs families tend to get glossed over, which I think leaves a lot of struggling couples feeling as if they're the only ones who stumble. In the end, I came to see the benefits of centering on this section of the book, and so I proudly present our dirty laundry. Enjoy.
To Have and to Hold -- Wondertime, March 2008
(By the way, in case you weren't aware, Wondertime is actually published by Disney. I consider it a personal point of pride that I am responsible for The Mouse printing the word "asshole". Sorry, kids.)
February 1, 2008
Philanthropy and boobs
I don't know about your friends, but I know some pretty remarkable and generous people, and of them all, I can't think of one that I admire more than my friend Dana. She has been a good friend to my family and me since before Schuyler was born, and I can't think of anyone who we've been able to consistently count on more than her. I know that I'm not the only person who feels that way, too. We miss her madly.
Back in the summer of 2000, Dana embarked on a crazy bicycle ride from Boston to New York, benefitting AIDS research. To me, the person who has to have an internal dialogue every day I go to work concerning whether or not I should take the elevator to the second floor, this was an astounding achievement.
Now she's doing it again. This time it's a three-day walk benefitting the Susan G. Komen for the Cure and National Philanthropic Trust, funding research, education, screening and treatment of breast cancer.
Go to Dana's Philadelphia Breast Cancer 3-Day page and help out, won't you? It's for a great cause, and besides, as Dana points out, "EVERYONE LIKES BREASTS". Which I think is probably a universal truth.
Back in the summer of 2000, Dana embarked on a crazy bicycle ride from Boston to New York, benefitting AIDS research. To me, the person who has to have an internal dialogue every day I go to work concerning whether or not I should take the elevator to the second floor, this was an astounding achievement.
Now she's doing it again. This time it's a three-day walk benefitting the Susan G. Komen for the Cure and National Philanthropic Trust, funding research, education, screening and treatment of breast cancer.
Go to Dana's Philadelphia Breast Cancer 3-Day page and help out, won't you? It's for a great cause, and besides, as Dana points out, "EVERYONE LIKES BREASTS". Which I think is probably a universal truth.
January 30, 2008
Mmmm, new book smell
So, guess what the FedEx guy brought today?
I guess this is really happening. Either that, or someone went to a lot of trouble to tool me, printing up one copy of a book.
Nineteen days...
(By the way, I also wrote an article called "My Name is Schuyler" for the February issue of "Communication Without Limit", the monthly newsletter for the Prentke Romich Company, makers of the Big Box of Words.)
January 29, 2008
Wondertime supplement
As part of the upcoming article in the March 2008 issue of Wondertime Magazine, you may now read a web exclusive interview I did as a supplement to the print article.
If you read it and find yourself wondering if I really am that eloquent, or if Wondertime was able to edit out all the "um"s and sputters and parenthetical blathering that I am prone to when actually speaking rather than writing, well, I'm going to say that I am just that naturally well-spoken.
No, really. What?
If you read it and find yourself wondering if I really am that eloquent, or if Wondertime was able to edit out all the "um"s and sputters and parenthetical blathering that I am prone to when actually speaking rather than writing, well, I'm going to say that I am just that naturally well-spoken.
No, really. What?
January 26, 2008
But I'm not the only one
I attended a media party here in Dallas the other night. These sorts of things aren't always the easiest for me, and not just because I don't drink myself into "life of the party" mode so much anymore. (What was cute when I was in college would probably just be sad now that I'm, you know, thirty-ten.)
Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.
The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.
The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.
I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.
One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.
On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.
I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.
I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.
God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.
In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.
I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.
In my dreams, she speaks to me, but I almost never speak back to her.
The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.
Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.
The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.
The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.
I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.
Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.
That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.
And then you wait for it to slowly fill again, I guess.
One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.
On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.
I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.
I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.
God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.
In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.
I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.
In my dreams, she speaks to me, but I almost never speak back to her.
The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.
January 24, 2008
Schuyler speaks. Sort of.
Last month, Schuyler was interviewed by Tim Rogers of D Magazine, a cool Dallas area monthly. It was a surreal experience, in which he emailed questions and she answered with the Big Box of Words, which was attached to the computer like a second keyboard. She took the interview very seriously and crafted her answers very carefully. I set up a camera to take pictures while we did it, because I am a nerd.
The print version hasn't hit the news stands just yet, so I can't say how it looks on the page (or if it's even in print at all, come to think of it), but you can read the article, "Thinking Out Loud", on the D Magazine web site.
There will be absolutely no living with her now...
The print version hasn't hit the news stands just yet, so I can't say how it looks on the page (or if it's even in print at all, come to think of it), but you can read the article, "Thinking Out Loud", on the D Magazine web site.
There will be absolutely no living with her now...
January 22, 2008
A Different Kind of Normal
While poking around the Wondertime Magazine site yesterday (and NOT looking for mentions of my upcoming story, because that would be narcissistic and weird, right?), I came across the story that had originally attracted me to the magazine in the first place. "A Different Kind of Normal", by Charlotte Meryman, detailed the story of the Foard family, of parents Michelle and Jim and their son Jimmy, who suffers from an extremely rare chromosomal disorder called Alfi's syndrome. The story ran in four parts (which was a little maddening since at the time, Wondertime only ran four issues a year), and it's an excellent exploration of the issues that face special needs families, particularly ones where communication is an issue. It's not an exaggeration to say that Meryman's story had a pretty profound influence on how my own book turned out.
What I hadn't seen before, however, were the accompanying videos, which may have been produced after the series ran. Go watch the complete four webisodes. At one point you'll see Jimmy using a slightly older version of Schuyler's Big Box of Words.
The world is full of stories like Jimmy's and Schuyler's. They deserve to be heard.
January 15, 2008
The Quiet World of Ice Girl Gallery
So shines a good deed in a weary world."
-- William Shakespeare
January 14, 2008
The Quiet World of Ice Girl
We went for a walk in downtown Dallas yesterday, not for any particular reason other than to visit the Crow Collection of Asian Art, which Julie had been wanting to see for a while and which was within the budgetary range most suitable for the grand Rummel-Hudson estate. (Free, of course.)
After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.
Schuyler was taken by it immediately.
She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.
Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.
Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.
But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.
Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.
After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.
Schuyler was taken by it immediately.
She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.
Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.
Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.
But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.
Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.
My housekeeping? It's good, thank you for asking.
Well, I've wanted to mention this for a long time, but I didn't expect it to happen quite this soon.
The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.
The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.
I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.
-----
While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.
Stalkers, start clearing a space in your freezer for my head. A swell hat would be nice, too.
The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.
The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.
I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.
-----
While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.
Book Publishing Party
with special guest author
Robert Rummel-Hudson
(Schuyler's Monster: A Father's Journey
with His Wordless Daughter)
Hosted by mediabistro.com
Dip
416 Third Avenue
(between 29th & 30th)
New York, NY 10016
RSVP required
Stalkers, start clearing a space in your freezer for my head. A swell hat would be nice, too.
January 13, 2008
Worst Email Ever
My friend Michael Malice has a new site that has a lot of potential for fun, Worst Email Ever: The Internet's Inbox. I made tonight's cut because of an email in which I told him that when I saw the news story about wrestler Chris Benoit murdering his family, I immediately thought of him. (Michael Malice just saw a collaboration of his published, an autobiography of pro wrestler Matt Hughes, so it wasn't an entirely random thing to say.) Michael is responsible for the description-defying Overheard in New York, after all. And how many people make this kind of impression on someone like Harvey Pekar?)
I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.
My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.
I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.
My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.
January 10, 2008
SCHUYLER'S MONSTER: The Author on God
Transcript:
Rob: I think a lot of parents with broken children find God, and they find religion. They find a spirituality that sustains them. I certainly understand that, and I certainly respect it.
For me, I've always been an Agnostic, and I think I'm more agnostic now than ever before. You know, Schuyler's situation certainly raises a lot of questions, and it shakes any faith that you might have. But I've never given up on the idea of God. Julie says that she thinks the reason I could never be an Atheist is because then I wouldn't have anyone to blame. And I guess maybe that's true.
I do have a lot of questions that I would put to God about Schuyler, about all the kids like Schuyler, the kids who have it so much worse than Schuyler, about how that could happen. How a God of love and compassion can do that. But I don't have any answers.
My faith is in Schuyler, oddly enough. Watching her struggle and watching her fight. And I don't attribute faith to some invisible person in the sky, but I do feel very strongly when I observe Schuyler.
It's funny. I'm not sure if I believe in God, but I believe in Schuyler.
SCHUYLER'S MONSTER: Schuyler's Future
Transcript:
Rob: What do you see in Schuyler's future when you imagine, like every parent imagines their kids', even if they pretend they don't?
Julie: I would love to see her living by herself, having a boyfriend, girlfriend, whatever. You know, partner in crime. Just somebody to take care of her. I worry about that all the time. I don't want her to think that we're her caretakers, you know. Because she's independent like the both of us, and she...
You can tell that she wants to say so much, and she wants to do so much. And maybe that's a cheesy goal, but I just, I want her to be able to travel, and go to the movies with her friends, and drive and experience life and, you know, not have the old people chauffeuring her around and, you know, cleaning up after her. That's like my one goal is for her to, like, have her own life and not have to have us lagging behind her, checking up on her.
I mean, we're her parents. We're always going to be there for her, but you know, you gotta cut that cord. And that's going to be scary. That's kind of a scary thought to me, her being by herself, like, in an apartment like this, and cooking her own meals, doing her laundry, having pets, paying bills. It's a weird concept, because she has no concept of that stuff right now.
Who knows, maybe she won't. But I can dream, can't I?
SCHUYLER'S MONSTER: A Higher Purpose
Transcript:
Rob: Yeah, I don't think anyone who knew me before Schuyler was born would have ever said, "Yeah, that's the guy to raise a child, and certainly a child with special needs." I was... Things were a lot different. I was a very selfish person. I wasn't a bad person, I don't think, but the decisions that I made in my life were very self-centered, and if things got hard, I would bail, I was out. And after Schuyler was born, I learned a lot about myself.
And it wasn't just that I couldn't bail on Schuyler. I found that I didn't want to. You know, we've been through so much, and it's been so hard at certain times, but at no point was I ever, "God, I wish I could get out of this."
You know, Schuyler taught me a higher purpose, and a higher feeling. And that's made me a better person. I'm a much better, a much different person than I was before Schuyler. So I don't think I certainly was the ideal father, but I've really learned to be exactly, I think, much of the time anyway, exactly the father that she needs. In that sense, she's been my greatest teacher.
January 7, 2008
SCHUYLER'S MONSTER: Sadness and Joy
Transcript:
Rob: I think it's pretty clear that I can be a sad person. It certainly comes out in my writing. Schuyler's situation makes me sad. I think about it. Sometimes I have dreams, I dream about her, and in my dreams she talks to me, and she tells me everything's going to be okay. And then when I wake up the next day, it's the first thing that hits me, that it was a dream. So it is sad, and it does weight down on me.
It doesn't seem to be sad for her, though. She's always very positive. She gets frustrated, certainly. But I don't know that she seems to get depressed about it. I think she's accepted the situation and is ready to fight. And so the joy that I get and the strength that I get in my life is that which I draw from her. And in that sense, she's made me a better person. I'm certainly ten times the person I was before she was born.
I think... There's a temptation, I would think, to feel pity for parents who have special needs kids. And yet, I see how much Schuyler has changed my life, and how much she's improved me as a human being, and I sort of think that people shouldn't pity me, they should envy me. They should be jealous because I've got Schuyler in my life, I've got Schuyler doing the "Schuyler Effect" on me.
And if they don't they should. They should envy me. And I hope that comes out in the book, I hope I represent her accurately and in a way that people can see beyond her disability to this amazing person. It sounds like a cliche, and it's absolutely true.
SCHUYLER'S MONSTER: On Language
Transcript:
Rob: You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.
I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.
And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.
You know, in the past, people have asked me, they'll say "How do you think Schuyler will react one day when she reads that you thought she was broken?" You know, that she'll take some offense at the kind of language that we've used. I don't think she will react at all. I certainly don't think she'll be surprised. I don't think she'll feel like she's been deceived all this time.
We are very straightforward with Schuyler about her disability, and she fights it. She brings the fight every day, without any illusions, but also without any expectations that there's something that she can't do. She knows what she has to fight, and she knows that a thing that is broken is a thing that can be fixed. And a situation that requires this kind of work, she's exactly the person to do that kind of work.
So I think if Schuyler reads that one day, she's going to know that I understood, and I cared. I loved her, I loved her enough to take up this fight with her.
Twitch
I'm jumpy today, and it's just not getting any better.
The day started with Schuyler's return to school after two weeks off. This meant that all our usual morning rituals kicked back into gear, including my favorite, singing the theme to Kenny the Shark with Schuyler, but it also meant watching her get onto the school bus again and watching it drive away while trying to suppress the agita and the mental images of various bus-related disasters running through my mind.
A quick look in the mirror before heading off to work revealed that I had something in my hair, something light-colored, maybe shaving cream. Only it wasn't. I tugged at it and ran my fingers through it, only to discover that what I was seeing was in fact grey hair. That's AWESOME.
I got to work just in time to be interviewed over the phone for the upcoming Wondertime piece (and I do not envy the poor intern whose job it will be to transcribe my um-filled babble). Not half an hour later, I received the nice review from Publishers Weekly (it did contain the word "stupid", but they were quoting me, so I have no one to blame but myself), and I was feeling much better about my day.
And that's when the university began testing the tornado warning system.
There really is only so much "BLAT!!! BLAT!!! Severe weather! Take cover! You're all going to die!!! BLAT!!! BLAT!!!" that I can handle today. It's going to give me grey hair.
Oh, wait a minute. Shit.
The day started with Schuyler's return to school after two weeks off. This meant that all our usual morning rituals kicked back into gear, including my favorite, singing the theme to Kenny the Shark with Schuyler, but it also meant watching her get onto the school bus again and watching it drive away while trying to suppress the agita and the mental images of various bus-related disasters running through my mind.
A quick look in the mirror before heading off to work revealed that I had something in my hair, something light-colored, maybe shaving cream. Only it wasn't. I tugged at it and ran my fingers through it, only to discover that what I was seeing was in fact grey hair. That's AWESOME.
I got to work just in time to be interviewed over the phone for the upcoming Wondertime piece (and I do not envy the poor intern whose job it will be to transcribe my um-filled babble). Not half an hour later, I received the nice review from Publishers Weekly (it did contain the word "stupid", but they were quoting me, so I have no one to blame but myself), and I was feeling much better about my day.
And that's when the university began testing the tornado warning system.
There really is only so much "BLAT!!! BLAT!!! Severe weather! Take cover! You're all going to die!!! BLAT!!! BLAT!!!" that I can handle today. It's going to give me grey hair.
Oh, wait a minute. Shit.
Bring forth the fancy pants
A new review of the book, from Publishers Weekly...
-----
Schuyler's Monster: A Father's Journey with His Wordless Daughter
Rummel-Hudson, Robert (Author)
ISBN: 0312372426
St. Martin's Press
Published 2008-02
Hardcover, $22.95 (288p)
Family & Relationships | Children with Special Needs; Biography & Autobiography | Parental Memoirs
Reviewed 2008-01-07
PW
The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden "monster" is causing her wordlessness, they endure "two years of questions and tests and at least one unsatisfactory diagnosis." But while Rummel-Hudson initially rages at God for giving Schuyler "a life that would never ever be what we'd imagined it to be," his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a "stupid blind father's love." As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the "gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed," leads him to understand that "she was the one teaching me how to make my way in this new world." (Feb.)
Copyright © 1997-2005 Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
-----
Schuyler's Monster: A Father's Journey with His Wordless Daughter
Rummel-Hudson, Robert (Author)
ISBN: 0312372426
St. Martin's Press
Published 2008-02
Hardcover, $22.95 (288p)
Family & Relationships | Children with Special Needs; Biography & Autobiography | Parental Memoirs
Reviewed 2008-01-07
PW
The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden "monster" is causing her wordlessness, they endure "two years of questions and tests and at least one unsatisfactory diagnosis." But while Rummel-Hudson initially rages at God for giving Schuyler "a life that would never ever be what we'd imagined it to be," his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a "stupid blind father's love." As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the "gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed," leads him to understand that "she was the one teaching me how to make my way in this new world." (Feb.)
Copyright © 1997-2005 Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
January 5, 2008
SCHUYLER'S MONSTER: Fathers' Stories
Transcript:
Rob: I do think that there is a place for fathers' stories. I think that now more than ever, people want to hear the stories that fathers have to tell.
I think the past fifty years or so have been kind of a weird time for fathers. After World War II, I think fathers in our society were defined by their absence as much as by the things that they did. You had the fathers who were lost in the war. You had fathers who were absent because of their careers, because of their work. You had the "deadbeat dads."
So I think in the past maybe twenty years or so, you've seen this move back towards fathers who want to be involved and are insisting on being involved in their kids' lives. And it's a fascinating time, but it also, it's totally up for grabs. The stories that fathers have to tell are very individual. Especially with a kid like Schuyler, there's certainly no user's manual for Schuyler, and there's no job description for being a father, certainly not a father for someone like Schuyler.
So it's... I'm really excited about the number of fathers' stories that are being told, because they're all different, they're all individual, and I think that's great, and I hope there's more.
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.
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