It seems to me that there are a lot of little pieces of Schuyler that make up who she is, so many mosaic tiles that form her picture. Some of them are tiny, others are large and dictate so much of the shape of her portrait. And most of all, they change, frequently, so much so that sometimes I struggle to keep up.
Schuyler loves fairies now. Dragons are sort of old hat, but dinosaurs still have a place in her world, albeit not as central as before. Mermaids have also lost some of their appeal, although she still loves them and will claim to be one from time to time. And King Kong remains beloved.
Schuyler wants me to buy a Mini Cooper.
Schuyler's hair is slowly going back to its natural color (slowly because apparently "temporary" means something different to the fine folks at L'Oreal), and she hasn't requested a recharge in a while. We usually don't color it during the summer anyway, since she spends so much time in the pool, with its chlorinated water. We'll see what she wants in a few months.
When we drive past this one field full of horses and llamas in Plano, Schuyler loses her mind. Her favorite horse is the white one. And she still knows that llamas say "Om? Om? Om?"
Schuyler seems to be losing her love for Hannah Montana. I'd celebrate, except there's no telling what horribleness will follow. For girls her age, Hannah Montana is about as innocuous as it gets without involving Jesus.
Schuyler is the self-proclaimed Queen of Monkeys.
Having had the opportunity to watch Schuyler with kids her age, including her cousins last weekend, I am learning a few things. The most encouraging is that she seems to be unusually well-adjusted emotionally for her age. She never melts down, she's not terribly materialistic and she shares easily.
The most troubling thing I've realized all over again is also the hardest to say, but here it is: in a lot of ways, both developmentally and even, perhaps, cognitively, Schuyler is still seriously delayed. She doesn't use her device as much as I'd like for her to, largely because her verbal abilities are coming along to the point that we can usually understand her, as can many others who spend time with her regularly. But the fact remains that a lot of what she says goes unfathomed, and she needs to use her device much, much more in her daily life. Consider this a resolution to kick her in the ass, motivationally speaking.
Schuyler's love for pudding defies rational thought.
Schuyler likes to play monster games. Her most recent is the Grass Monster, who apparently lives in the grass (well, yeah) and will grab you like the Kraken if you fail to heed stepping stones. She first came up with it while we were waiting outside a restaurant a few weeks ago, and the fiction of the Grass Monster has grown to near epic proportions. We sort of ganged up on her cousin last weekend and convinced him that there's such a thing as the Grass Monster. I would feel guilty about that, except as father/daughter activities go, it was pretty sweet.
Schuyler had a tiny little wart on her hand. She was bothered by it at first, but then decided that it gave her witch powers and became quite upset when it went away. It recently reappeared, and she couldn't be happier.
Schuyler keeps her coins in a bank that looks like a chocolate rabbit. We call it the Money Bunny. She looks for coins all the time now, and covets the Money Bunny like Silas Marner.
Schuyler watches (and sings the theme song to) Kenny the Shark every morning before school. Well, we all do, really. And then she gets on the bus and goes to school, leaving me with my daily dose of separation anxiety mixed with horrible bus crash paranoid fantasies.
Schuyler always points out "the fuzz" when we're driving around.
Schuyler's condition keeps her from doing some sports, like baseball, but interestingly, I think she might be able to really play soccer. As I wrote before, we tried hooking her up with a local "Don't call it Angel League" angel league, but every time we went, they scrapped the soccer and just played baseball. Schuyler said she didn't want to go anymore, and that was that. In the fall, we'll try again with a different, "You can call us Angel League" angel league. I wouldn't be surprised if she could actually play mainstream soccer, and soon. I've seen some of those girls play, after all.
Schuyler likes to wear hoodies now. Her punkitude is unwavering. She still loves her Chuck Taylors but has chilled on the temporary tattoos.
Schuyler finally got to see the Cloverfield monster, thanks to the wildly inappropriate but "interesting in a cautionary tale sort of way" parenting of her father. I gave her sort of the greatest monster moments version, because I didn't think she'd care about a bunch of hipster wannabes at a party and I thought the little monsters would be too scary for her.
(I was right about the party but wrong about the little monsters, incidentally. I forgot about one scene until it was too late, and she loved it. "Wow!" she whispered, before signing "more" until I complied.)
I asked her what she thought of the actual big monster, and she said on the Big Box of Words, and I quote, "I love him. He my friend. He is biggest. He lives in New York City." (She's not one for spoiler alerts, apparently.)
Speaking of Schuyler's lack of fear, there is one exception. She is still afraid of the water. This is hard because she loves going to the pool, but she won't step away from the edge unless she positively has to. Working on this is going to be a summer project for us.
And speaking of the summer, it looks like we're going to skip all the summer day care trauma altogether this year and just rearrange our schedules so that she can stay with us. This is going to mean that she'll come to work with me from time to time. We'll see how that goes. If nothing else, it'll give me more opportunities to harass her about using her device.
Schuyler and Julie are coming with me to Chicago next November.
When we sign books, Schuyler gets bored with doing it the same way every time. At our last signing, she drew a flower for someone.
Schuyler is learning to lie, which is making for interesting times. She's also experimenting with the idea of "accidentally" leaving her homework at school. Trust me, friend. That doesn't work for long.
She and I talked about her monster recently, in a quiet moment together. She said that she doesn't mind the way things are, because her AAC device makes her different, and she likes that. "I love my voice," she said, indicating her Big Box of Words. She seemed genuinely puzzled that I would even ask.
Sometimes, she says, Schuyler is an eagle.
Sometimes she is Ice Girl.
Sometimes she breaks my heart.
Mostly, she's my "why".
May 7, 2008
Ten words = free stuff?
My friend Karen Harrington, author of Janeology, is having a fun contest on her site. To celebrate her recent good review from the New Mystery Reader, she's giving away signed copies of her book. All you have to do is write a ten word story about a dysfunctional family. (One of the core elements of her book is a pretty extreme level of family dysfunction, I think it's safe to say.) Ten words, no more and no less.
Win free copies of JANEOLOGY
For my own entry, I came up with this, about a 100% totally fictional family with whom I am not one bit associated and who should not call later to complain, because it's just a joke and a little writing exercise, and, uh, yeah.
"If they'd known about the book, they might have behaved."
Incidentally, I don't get to read a lot of fiction, certainly not as much as I'd like to, but Karen's book was a lot of fun. I liked it so much, I reviewed it on Amazon. I'm swell that way.
May 6, 2008
May 5, 2008
Single Mom, um, Interviewing
I was interviewed by my friend and Single Mom Seeking author Rachel Sarah last week. The title of the interview addresses what might be your first question:
What’s a married dad doing on Single Mom Seeking? Welcome Robert Rummel-Hudson
I actually got to meet Rachel when I was in New York, and one of my biggest regrets is that I didn't get to talk to her longer. You think that book release parties and signing events are going to be a great opportunity to get to know people, but the opposite is actually true.
Her site is one of those that grows out of a book and takes on a vibrant life of its own, and I am thrilled that she wanted me to be a part of it.
What’s a married dad doing on Single Mom Seeking? Welcome Robert Rummel-Hudson
I actually got to meet Rachel when I was in New York, and one of my biggest regrets is that I didn't get to talk to her longer. You think that book release parties and signing events are going to be a great opportunity to get to know people, but the opposite is actually true.
Her site is one of those that grows out of a book and takes on a vibrant life of its own, and I am thrilled that she wanted me to be a part of it.
May 2, 2008
Hello there, Houston
UPDATE: I just heard from the reporter. Apparently his bosses like the story so much that they are going to hold it for a bigger ratings night and do some local promotion for it. So look for this to run on May 12th.
--------
If you live in Houston, you can catch Greg Groogan's story on Schuyler's Monster and the Rummel-Hudsons tonight at 9pm Central on Fox 26.
For those of you not in Houston, you can watch a live video stream. (It shows traffic the rest of the time, which I've found myself strangely mesmerized by all morning.) I'll post a link to the story at the end of this entry as soon as it goes up, probably tomorrow.
I think this is going to be a good story. I got a little sneak preview of the script in progress the other day, and it's a little more dramatic and personal than the ones we've participated in before, which is sort of fun. It's nice to change thing up now and then.
While I was watching the live feed this morning, I just happened to catch the "what's on tonight's broadcast" guy:
"Tonight you're going to meet a father whose successful struggle with his daughter's autism has led to a novel."
Well, okay. Close enough. At least he didn't say she had monkeypox.
--------
If you live in Houston, you can catch Greg Groogan's story on Schuyler's Monster and the Rummel-Hudsons tonight at 9pm Central on Fox 26.
For those of you not in Houston, you can watch a live video stream. (It shows traffic the rest of the time, which I've found myself strangely mesmerized by all morning.) I'll post a link to the story at the end of this entry as soon as it goes up, probably tomorrow.
I think this is going to be a good story. I got a little sneak preview of the script in progress the other day, and it's a little more dramatic and personal than the ones we've participated in before, which is sort of fun. It's nice to change thing up now and then.
While I was watching the live feed this morning, I just happened to catch the "what's on tonight's broadcast" guy:
"Tonight you're going to meet a father whose successful struggle with his daughter's autism has led to a novel."
Well, okay. Close enough. At least he didn't say she had monkeypox.
April 28, 2008
Deus ex machina
When Schuyler's Monster was published, I think the thing that surprised my friends the most, even more than my confessed infidelity (because let's face it, who was really surprised?), was the fact that I wrote so much about God. To be honest, I was a little surprised myself.
"For now, she largely remains an enigma, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."
After the book came out, and especially after I began talking about faith issues on tour and in book clubs, and now on television, a lot of people have been writing to me about it. That's fair enough, and it's a dialogue I welcome. If I didn't, I wouldn't have written about it. But it's been hard to discuss because my own feelings are in flux. I think that's the way faith is for most people. Does anyone ever truly arrive at an endpoint in their philosophy? I'm not sure I trust anyone who is absolutely sure of very much in this world.
It didn't take me long as a child to decide that I wasn't a Christian and never would be. Sorry, Jesus. I'm just not that into you. But my feelings about God have been more complicated, even before Schuyler was born. It's probably no secret that my feelings have become much more convoluted since she was diagnosed. Well, of course they have.
But the thing is, I've never given up on the idea of God, not completely. My God might not be your God, not if you buy into the whole "angry invisible man in the sky" idea. I find the idea of moral judgment from on high to be so subjective as to be meaningless. When I refer to "this grand rough world" as I sometimes do (and no one has ever identified the source of that phrase), I mean a place that is wondrous and terrible, a universe of unspeakable beauty and unblinking cruelty. It can be difficult to place God in the context of such a place.
And yet, sometimes I try. Sometimes I want an answer from God, an answer to why he sometimes breaks children. It seems like a fair question to me, and yet the God that I seem to have constructed in my head (like I think we all do, which is why our God tends to hate all the same people that we do) doesn't have the answers. Perhaps my God is less of a Creator and more of a Manager. Maybe he built the store, but now he works behind the counter, and what his customers do is beyond his control and maybe even his understanding.
I find Manager God easier to accept than Control Freak God, because then we're back to the idea that he intentionally breaks little children, allows vile things to happen to them, makes a mockery of their innocence. And that's hard. I hear a lot of variations on "God works in mysterious ways", about how Schuyler and all the broken children in the world are here to teach us things, or how their brokenness has some greater meaning. And I just can't accept that, I can't make peace with the idea that they exist and suffer in order to illuminate the rest of us.
And yet.
There are things about myself that I accept as a sort of hardwired reality. I can resist them, and I do, but they are there and they are me. I'm always going to have a temper, and poor impulse control, and most of all issues with authority. I'm not actually sure I'd want to change all that. I'm never going to be the poster boy for monogamy and I doubt very seriously if I'll ever get a job as a responsible financial planner. I can always try to do better, but the thing is, it'll always be something that I must try to improve. I'm flawed, like the rest of you but probably more than most. Perhaps it is to my advantage that my worser nature is in a book now; people who can't deal with my flaws can't say they weren't warned.
And yet, Schuyler came to me. To me, and to Julie, who shares most of my flaws. And I'm going to flatter myself to think that we've done pretty well for her. We made lots of mistakes, and we continue to do so, and our flaws haven't magically disappeared. But we're managing to raise a pretty amazing little girl, one who is as broken as we are and yet perfect in her own way.
I don't know how God fits into that. I remember that very few of the people in the Bible or throughout history who were doing God's work were very strong believers. Blind faith and religious fealty don't necessarily seem to lead to great deeds. They doubted, and they sinned, and if a doubter and a sinner can labor for God while simultaneously calling him on his bullshit every so often, then perhaps I've still got some work to do. I can shake my fists at the sky and say "oh, that's fucked up!" when such a gesture is appropriate, and then get back to work.
God and I have some things to work out. But negotiations haven't broken down just yet.
"For now, she largely remains an enigma, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."
After the book came out, and especially after I began talking about faith issues on tour and in book clubs, and now on television, a lot of people have been writing to me about it. That's fair enough, and it's a dialogue I welcome. If I didn't, I wouldn't have written about it. But it's been hard to discuss because my own feelings are in flux. I think that's the way faith is for most people. Does anyone ever truly arrive at an endpoint in their philosophy? I'm not sure I trust anyone who is absolutely sure of very much in this world.
It didn't take me long as a child to decide that I wasn't a Christian and never would be. Sorry, Jesus. I'm just not that into you. But my feelings about God have been more complicated, even before Schuyler was born. It's probably no secret that my feelings have become much more convoluted since she was diagnosed. Well, of course they have.
But the thing is, I've never given up on the idea of God, not completely. My God might not be your God, not if you buy into the whole "angry invisible man in the sky" idea. I find the idea of moral judgment from on high to be so subjective as to be meaningless. When I refer to "this grand rough world" as I sometimes do (and no one has ever identified the source of that phrase), I mean a place that is wondrous and terrible, a universe of unspeakable beauty and unblinking cruelty. It can be difficult to place God in the context of such a place.
And yet, sometimes I try. Sometimes I want an answer from God, an answer to why he sometimes breaks children. It seems like a fair question to me, and yet the God that I seem to have constructed in my head (like I think we all do, which is why our God tends to hate all the same people that we do) doesn't have the answers. Perhaps my God is less of a Creator and more of a Manager. Maybe he built the store, but now he works behind the counter, and what his customers do is beyond his control and maybe even his understanding.
I find Manager God easier to accept than Control Freak God, because then we're back to the idea that he intentionally breaks little children, allows vile things to happen to them, makes a mockery of their innocence. And that's hard. I hear a lot of variations on "God works in mysterious ways", about how Schuyler and all the broken children in the world are here to teach us things, or how their brokenness has some greater meaning. And I just can't accept that, I can't make peace with the idea that they exist and suffer in order to illuminate the rest of us.
And yet.
There are things about myself that I accept as a sort of hardwired reality. I can resist them, and I do, but they are there and they are me. I'm always going to have a temper, and poor impulse control, and most of all issues with authority. I'm not actually sure I'd want to change all that. I'm never going to be the poster boy for monogamy and I doubt very seriously if I'll ever get a job as a responsible financial planner. I can always try to do better, but the thing is, it'll always be something that I must try to improve. I'm flawed, like the rest of you but probably more than most. Perhaps it is to my advantage that my worser nature is in a book now; people who can't deal with my flaws can't say they weren't warned.
And yet, Schuyler came to me. To me, and to Julie, who shares most of my flaws. And I'm going to flatter myself to think that we've done pretty well for her. We made lots of mistakes, and we continue to do so, and our flaws haven't magically disappeared. But we're managing to raise a pretty amazing little girl, one who is as broken as we are and yet perfect in her own way.
I don't know how God fits into that. I remember that very few of the people in the Bible or throughout history who were doing God's work were very strong believers. Blind faith and religious fealty don't necessarily seem to lead to great deeds. They doubted, and they sinned, and if a doubter and a sinner can labor for God while simultaneously calling him on his bullshit every so often, then perhaps I've still got some work to do. I can shake my fists at the sky and say "oh, that's fucked up!" when such a gesture is appropriate, and then get back to work.
God and I have some things to work out. But negotiations haven't broken down just yet.
Chapter Seven
First of all, can I get a woo? Why, thank you.
One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:
Raising Autistic Children Making Marriages Difficult
His story on Schuyler should run at the end of the week.
One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:
Raising Autistic Children Making Marriages Difficult
His story on Schuyler should run at the end of the week.
April 25, 2008
Pimpin', yo.
Author appearance
Saturday, April 26, 2008
2:00 pm
Barnes & Noble - Lewisville
Vista Ridge Village
2325 South Stemmons Freeway Suite 401
Lewisville, TX 75067
972-315-7966
I'll be there with Schuyler. This is the last regular appearance that I've got on my schedule (there's one in Fort Worth next month, but I'm not exactly sure how it's going to work), so if you want to meet Schuyler, abuse me in person or kill us and eat us (not recommended), this might be your last chance for a while.
I'm working on an entry on Faith, by the way. Hopefully I'll have it done today, just in case someone wants to issue a fatwa before the book signing. I share because I care.
Saturday, April 26, 2008
2:00 pm
Barnes & Noble - Lewisville
Vista Ridge Village
2325 South Stemmons Freeway Suite 401
Lewisville, TX 75067
972-315-7966
I'll be there with Schuyler. This is the last regular appearance that I've got on my schedule (there's one in Fort Worth next month, but I'm not exactly sure how it's going to work), so if you want to meet Schuyler, abuse me in person or kill us and eat us (not recommended), this might be your last chance for a while.
I'm working on an entry on Faith, by the way. Hopefully I'll have it done today, just in case someone wants to issue a fatwa before the book signing. I share because I care.
April 24, 2008
When the visigoths get to the gate, I hope they have flag pins
Every now and then, someone will email me and ask if I ever intend to talk about politics again. This blog has sort of turned into the Rob & Schuyler Show, and that is in part intentional, especially for now while the book is new and people are coming here as a result.
But the truth is that I just haven't had much to say about politics. I've become so disheartened by the whole process that honestly, I don't have much to contribute. I've become the saddest of Independents, the kind who has given up on the two parties as Evil (R) and Incompetent (D). I'll never believe in the Republicans because they stand for everything I deem to be foul, but the Democrats? I may actually despise them a little more, since they dress themselves in my progressive values and then achieve almost nothing of worth at all. Both parties have achieved a level of consistency. I can always count on the Republicans to do the wrong thing, and I know the Democrats will follow up by trying half-heartedly to do the right thing, maybe, if the polls say they should, but ultimately fuck it up catastrophically.
Anyway, I've placed a little Obama widget on the sidebar there since unlike the Nixonian Hillary or the Magoo-like McCain, I can at least believe in what he says he stands for, and his much-maligned "lack of experience" means that he hasn't had time to really don the Cloak of Disappointment yet. But in my heart of hearts, I suspect he will. (Bill Clinton did, after all. Good lord, he needs one good and true friend, someone who's not afraid to lean over and say, "You really need to shut the fuck up now.")
Anyway, since the primary race has officially and flatulently stunk up just about every corner of the media and trying to ignore it is becoming impossible, I thought I'd let The Onion speak for me.
Poll: Bullshit Is Most Important Issue For 2008 Voters
But the truth is that I just haven't had much to say about politics. I've become so disheartened by the whole process that honestly, I don't have much to contribute. I've become the saddest of Independents, the kind who has given up on the two parties as Evil (R) and Incompetent (D). I'll never believe in the Republicans because they stand for everything I deem to be foul, but the Democrats? I may actually despise them a little more, since they dress themselves in my progressive values and then achieve almost nothing of worth at all. Both parties have achieved a level of consistency. I can always count on the Republicans to do the wrong thing, and I know the Democrats will follow up by trying half-heartedly to do the right thing, maybe, if the polls say they should, but ultimately fuck it up catastrophically.
Anyway, I've placed a little Obama widget on the sidebar there since unlike the Nixonian Hillary or the Magoo-like McCain, I can at least believe in what he says he stands for, and his much-maligned "lack of experience" means that he hasn't had time to really don the Cloak of Disappointment yet. But in my heart of hearts, I suspect he will. (Bill Clinton did, after all. Good lord, he needs one good and true friend, someone who's not afraid to lean over and say, "You really need to shut the fuck up now.")
Anyway, since the primary race has officially and flatulently stunk up just about every corner of the media and trying to ignore it is becoming impossible, I thought I'd let The Onion speak for me.
Poll: Bullshit Is Most Important Issue For 2008 Voters
Good Morning Texas Redux
Some of you were having trouble seeing the video from the WFAA site. Also, it cut off at the end before you got to see Julie's Stepford Wife smile and Schuyler mentally compiling her list of places she would rather be at that moment. So here's another shot at it. (Sorry the quality is sort of weird. I'll keep working on it.)
April 23, 2008
Good Morning Texas
Well, that was fast. My interview on Good Morning Texas is already online, so go check it out. I'm sorry to say, this clip cuts off before you get to see Schuyler and Julie sitting in the studio, so sadly it's just me and my unusually large meaty head.
I thought it went very well. It's hard in these very short segments to really get into very much of depth, but Paige McCoy Smith managed to cover an astonishing amount in a brief period. She asked me about my faith, which was a little unexpected (although she did give me a heads up before we started) but something that I was actually happy to talk about. It's funny, but the interviews for which I am the most prepared in terms of knowing questions in advance and what my answers will be, those tend to be my least favorite, and the ones that I think are the least interesting. Discussing my feelings about God on live television isn't something I would have ever expected to actually enjoy doing, but I'm glad she asked it. My answer was pretty much on the fly, and yet I'm entirely happy with it.
Another thing that Paige brought home to me was just how much I enjoy doing interviews with journalists who have actually read the book. That seems like an obvious point, but you'd be surprised. And it's always obvious, too. Not so much that they know facts that are pertinent, although that's part of it. (My favorite from a past interview was, about Schuyler's static brain condition, "Good luck with her continued improvement.") It's more that once you've read a book, you know a great deal about the author's personality and beliefs and such than you'll ever get from a press release or a book flap description. Paige McCoy Smith and KERA's Krys Boyd and Fox's Greg Groogan were responsible for interviews that I've enjoyed immensely, for just that reason.
Schuyler had a great time, of course, and charmed the pants off of everyone, as usual. The studio at WFAA is wide open, with glass walls everywhere, even the green room, so while you're waiting, you can see much of what's going on. She spent the better part of the morning having her mind completely blown, and finished off the experience by eating the strawberry smoothie prepared in a segment by "celebrity chef Jon Ashton". Julie finished up the morning by slobbering all over "celebrity chef Jon Ashton". It's sad, really, watching a woman of her advanced years lose her dignity like that. Really unfortunate.
Okay, so I really shouldn't tell this story, because past experience suggests that the chances of it getting back to the parties involved are somewhere near 100%. But it's been a while since I've started any trouble online (at least here; I've been poking a bees' nest on a parenting site on the topic of spanking, a metaphor that only works if you imagine really dumb bees), so I think I'm due.
While we were waiting for the show to begin, we were sitting in a room watching "Good Morning America" with two fashion models who were going to be on a segment before mine. GMA was interviewing Marlee Matlin about her appearance on "Dancing with the Stars", and she was signing away as she talked.
One of the models turned to the other and said, with absolute sincerity, "Do you think she's deaf?"
I thought it went very well. It's hard in these very short segments to really get into very much of depth, but Paige McCoy Smith managed to cover an astonishing amount in a brief period. She asked me about my faith, which was a little unexpected (although she did give me a heads up before we started) but something that I was actually happy to talk about. It's funny, but the interviews for which I am the most prepared in terms of knowing questions in advance and what my answers will be, those tend to be my least favorite, and the ones that I think are the least interesting. Discussing my feelings about God on live television isn't something I would have ever expected to actually enjoy doing, but I'm glad she asked it. My answer was pretty much on the fly, and yet I'm entirely happy with it.
Another thing that Paige brought home to me was just how much I enjoy doing interviews with journalists who have actually read the book. That seems like an obvious point, but you'd be surprised. And it's always obvious, too. Not so much that they know facts that are pertinent, although that's part of it. (My favorite from a past interview was, about Schuyler's static brain condition, "Good luck with her continued improvement.") It's more that once you've read a book, you know a great deal about the author's personality and beliefs and such than you'll ever get from a press release or a book flap description. Paige McCoy Smith and KERA's Krys Boyd and Fox's Greg Groogan were responsible for interviews that I've enjoyed immensely, for just that reason.
Schuyler had a great time, of course, and charmed the pants off of everyone, as usual. The studio at WFAA is wide open, with glass walls everywhere, even the green room, so while you're waiting, you can see much of what's going on. She spent the better part of the morning having her mind completely blown, and finished off the experience by eating the strawberry smoothie prepared in a segment by "celebrity chef Jon Ashton". Julie finished up the morning by slobbering all over "celebrity chef Jon Ashton". It's sad, really, watching a woman of her advanced years lose her dignity like that. Really unfortunate.
Okay, so I really shouldn't tell this story, because past experience suggests that the chances of it getting back to the parties involved are somewhere near 100%. But it's been a while since I've started any trouble online (at least here; I've been poking a bees' nest on a parenting site on the topic of spanking, a metaphor that only works if you imagine really dumb bees), so I think I'm due.
While we were waiting for the show to begin, we were sitting in a room watching "Good Morning America" with two fashion models who were going to be on a segment before mine. GMA was interviewing Marlee Matlin about her appearance on "Dancing with the Stars", and she was signing away as she talked.
One of the models turned to the other and said, with absolute sincerity, "Do you think she's deaf?"
April 21, 2008
Take Your Daughter to Work Week
This is a busy week for us, in the best possible way. As I mentioned before, this Wednesday I'll be on a Dallas-area program called Good Morning Texas, on a segment called The Not So Perfect Parent. Julie and Schuyler will be in the green room, and may very well make an appearance on the show. Well, I certainly hope they do, because let's face it, who would YOU rather watch? Lovely Julie and enchanting Schuyler, the self-described "Queen of the Monkeys"? Or, you know, fat old Robba the Hutt? The show comes on during the breakfast hour, after all. No need upsetting people while they're eating.
The other thing taking place this week is a book signing at the Barnes & Noble in Lewisville, Texas. If you live in the area and would like to meet me (or really, more to the point, if you'd like to meet Schuyler), we'll be there at 2:00pm. It's going to be a special event (as in, totally unpredictable and possibly chaos-in-pink-Chuck-Taylors) because Julie has to work, so it will just be Schuyler and me. This means that if I do a reading, she'll be on her own. Anyone who has seen her at these events knows just how much fun that might be. Come to the signing and watch the last shreds of parental authority fly out of my shaking hands!
A bonus for people in attendance: Schuyler loves to sign books, and she's become very sophisticated in her approach. We attended a very cool book club last week, and it should come as no surprise that her signature was pretty clearly coveted more than mine. Which is as it should be.
When Schuyler signs a book, her name stretches across the page, the letters blockish and angular but very meticulously written out. She ends her autograph with a period, every time, and occasionally she'll sneak down and put a period at the end of mine, too. If she gets to the edge of the page before she's done, she simply shifts into vertical mode for the rest of her name. Sometimes she'll pick a different page to sign, and often she quickly signs in the spot that I usually use, just to be a turd. She even laughs when she does it. Every time she signs her name, it's different, and not just slightly.
I'm always thrilled to sign books for stores, and I've been happily signing a lot of books for Prentke-Romich, makers of the Big Box of Words. But we decided at the very beginning of all this book business that Schuyler would only sign books for individuals, either in person or sent to us or whatever. I like the idea of Schuyler's autograph rendering someone's book into a totally unique thing, different from any other in the world.
Just like Schuyler herself.
The other thing taking place this week is a book signing at the Barnes & Noble in Lewisville, Texas. If you live in the area and would like to meet me (or really, more to the point, if you'd like to meet Schuyler), we'll be there at 2:00pm. It's going to be a special event (as in, totally unpredictable and possibly chaos-in-pink-Chuck-Taylors) because Julie has to work, so it will just be Schuyler and me. This means that if I do a reading, she'll be on her own. Anyone who has seen her at these events knows just how much fun that might be. Come to the signing and watch the last shreds of parental authority fly out of my shaking hands!
A bonus for people in attendance: Schuyler loves to sign books, and she's become very sophisticated in her approach. We attended a very cool book club last week, and it should come as no surprise that her signature was pretty clearly coveted more than mine. Which is as it should be.
When Schuyler signs a book, her name stretches across the page, the letters blockish and angular but very meticulously written out. She ends her autograph with a period, every time, and occasionally she'll sneak down and put a period at the end of mine, too. If she gets to the edge of the page before she's done, she simply shifts into vertical mode for the rest of her name. Sometimes she'll pick a different page to sign, and often she quickly signs in the spot that I usually use, just to be a turd. She even laughs when she does it. Every time she signs her name, it's different, and not just slightly.
I'm always thrilled to sign books for stores, and I've been happily signing a lot of books for Prentke-Romich, makers of the Big Box of Words. But we decided at the very beginning of all this book business that Schuyler would only sign books for individuals, either in person or sent to us or whatever. I like the idea of Schuyler's autograph rendering someone's book into a totally unique thing, different from any other in the world.
Just like Schuyler herself.
April 15, 2008
I have macho cred
Shut up, I do!
(By the way, the macho tv watching behavior I engage in is actually those police chase video shows. Seriously, if I'm channel surfing and I come across one of those shows, I am powerless to NOT watch it. Dash cam or helicopter POV, it doesn't matter. If loving the spectacle of drug-crazed teenagers driving stolen cars into oncoming traffic or over those spike strips that make their tires EXPLODE is wrong, I don't want to be right.)
(By the way, the macho tv watching behavior I engage in is actually those police chase video shows. Seriously, if I'm channel surfing and I come across one of those shows, I am powerless to NOT watch it. Dash cam or helicopter POV, it doesn't matter. If loving the spectacle of drug-crazed teenagers driving stolen cars into oncoming traffic or over those spike strips that make their tires EXPLODE is wrong, I don't want to be right.)
Rockabye
One of the things that still catches me off guard is the fact that anyone gives a damn about what I think concerning books. Even now, in this age of consumer-driven content and Amazon reader reviews, the idea that my own credentials as a writer might give my opinion some added weight or validity doesn't naturally occur to me. When Karen Harrington, author of the very excellent Janeology made mention in an email of the review she had received "from a big-time memoirist", it actually took me a few seconds to realize that she was talking about me.
Nevertheless, when a book really does it for me, I try to put something together to express my feelings of gratitude to the author. And it really is gratitude. A good book is no small thing, nor (more to the point) is a bad one. When you watch a movie that you think is going to be good and it turns out to be a stinker, that's a good two hours of your life that you've tossed away. But when it's a book that leads you astray, the hours and even days that you've invested in it that you'll never get back. You'll be on your death bed one day, muttering to yourself, "If only I hadn't spent so much time reading all that fucking L. Ron Hubbard." You learn to cherish the good ones.
When I started reading Rebecca Woolf's Rockabye: From Wild to Child, I'd followed the marketing closely enough to know what I was supposed to be getting. I settled in to read another memoir of a party girl transitioning to parenthood while struggling to remain hip and cool. Which was certainly fine. Never having been actually cool myself, that transition was fairly straightforward for me, so I occasionally like to vicariously gank some cool from others.
By the time I finished Rockabye, I was looking at a different book altogether.
Simply put, this is a book about the tranformational power of a parent's love, the kind of love that can envelope you and warm you, but also consume and burn you. In bringing her son Archer into the world, Woolf begins to discover her own true heart and her own capacity for love and growth. Yes, part of that evolution involves leaving behind some of the party-all-the-time aspects of her youth, but the more important parts of herself, her independence and her insistence on doing things her own way, relying on her instincts, these are the pieces that she clings to.
I want to make something clear. Rebecca Woolf is a fantastic writer. She's open and honest, unblinkingly so at times, and yet her command of language and the near poetry of her wordplay feels like music. It's been a long time since I've gotten lost in language like that, just floating in someone's wordplay.
There are some striking parallels to Woolf's story and mine (or rather, to Archer's and Schuyler's), but I don't want to make too much of them. I would recommend her book to anyone who liked mine, if only because of some of those parallels, but honestly, I'd rather recommend Rockabye for no other reason than I found it to be a viscerally satisfying read. At its best, it feels like a gift, and it's at its best a lot.
I think you'll like this book. I'm pretty sure most of you will. Rebecca Woolf's the writer that I wish I was, and that's the truth.
Nevertheless, when a book really does it for me, I try to put something together to express my feelings of gratitude to the author. And it really is gratitude. A good book is no small thing, nor (more to the point) is a bad one. When you watch a movie that you think is going to be good and it turns out to be a stinker, that's a good two hours of your life that you've tossed away. But when it's a book that leads you astray, the hours and even days that you've invested in it that you'll never get back. You'll be on your death bed one day, muttering to yourself, "If only I hadn't spent so much time reading all that fucking L. Ron Hubbard." You learn to cherish the good ones.
When I started reading Rebecca Woolf's Rockabye: From Wild to Child, I'd followed the marketing closely enough to know what I was supposed to be getting. I settled in to read another memoir of a party girl transitioning to parenthood while struggling to remain hip and cool. Which was certainly fine. Never having been actually cool myself, that transition was fairly straightforward for me, so I occasionally like to vicariously gank some cool from others.
By the time I finished Rockabye, I was looking at a different book altogether.
Simply put, this is a book about the tranformational power of a parent's love, the kind of love that can envelope you and warm you, but also consume and burn you. In bringing her son Archer into the world, Woolf begins to discover her own true heart and her own capacity for love and growth. Yes, part of that evolution involves leaving behind some of the party-all-the-time aspects of her youth, but the more important parts of herself, her independence and her insistence on doing things her own way, relying on her instincts, these are the pieces that she clings to.
I want to make something clear. Rebecca Woolf is a fantastic writer. She's open and honest, unblinkingly so at times, and yet her command of language and the near poetry of her wordplay feels like music. It's been a long time since I've gotten lost in language like that, just floating in someone's wordplay.
There are some striking parallels to Woolf's story and mine (or rather, to Archer's and Schuyler's), but I don't want to make too much of them. I would recommend her book to anyone who liked mine, if only because of some of those parallels, but honestly, I'd rather recommend Rockabye for no other reason than I found it to be a viscerally satisfying read. At its best, it feels like a gift, and it's at its best a lot.
I think you'll like this book. I'm pretty sure most of you will. Rebecca Woolf's the writer that I wish I was, and that's the truth.
Thank you for choosing me to mother you. Thank you for sneaking in through my window and saying "Boo! Here I am!" Thank you for stirring and purring and screaming and crying and laughing and talking and standing and jumping. You are my exclamation point in a world of dot-dot-dots. You are my star in a sky muted by city lights. You are my sun. My son. My sun.
Rebecca Woolf, "Rockabye: From Wild to Child"
April 10, 2008
Things that give me pause in a busy world
I just wanted to quickly post and say that I'm alive and well, just a little busy and getting caught up. We received a visit from Fox 26 Houston reporter Greg Groogan, who spent some time with Schuyler and Julie and myself, both here at the apartment and at Schuyler's school. I'm told that his story will probably run in early May and may be picked up by affiliates in different parts of the country. In your town, too? Well, perhaps!
It felt like a really good interview; Greg's got a lot of experience with special needs kids, both personally and professionally, and it absolutely showed. I've talked to a variety of reporters since the book came out, and some of them were exceptionally sensitive and good, but with Greg, it was almost disconcerting, being interviewed by someone who really gets it. I'm curious as to how it's going to turn out; I suspect it's going to be outstanding. When we were doing the actual interview, I almost got a little weepy a few times. Not he-manly at all, I know. I suspect Greg was slipping estrogen into my water when I wasn't looking.
There's so much I want to talk about in more depth, such as the fact that I did a little book-for-movie exchange with Dan Habib, the father and filmmaker behind the brilliant documentary Including Samuel. I'll have much more to say about this, but for now, let me simply say that if you have any feelings or questions about inclusion and mainstreaming for special needs kids, you really do owe it to yourself to see his film. We're not in 100% lockstep agreement (you can probably imagine how I feel about the page in the film notes called "Words Matter", about person-first language), but we come to the same conclusions about the benefits of inclusion for these kids. Not just for my kids, but for yours, too. See this film if you get the opportunity, even if you find yourself opposed to inclusion education. Or especially if you're opposed to it, really.
In my book, I mention the polymicrogyria online support groups that I follow. I never contribute to them, probably out of something akin to misplaced guilt for Schuyler's comparatively good fortune, but I read them religiously. In Schuyler's Monster, I wrote about the heartbreak when a parent comes on the forum and reports the death of their child. There was one a few days ago; I showed it to Greg when he was here, and I think it made a powerful impression on him. Well, of course it did. If you're not touched by reading a parent's words as they report the death of their three year-old as a result of repeated, nasty seizures, there's something dead in your chest. You might want to go have that checked by a physician.
How does a parent watch their child die? How do they make peace with that, with their seemingly cruel or indifferent God and a world with such monsters in it? How do you bury your own son or daughter? People have been telling us how brave and how strong we are, but that's a world of brave and strong that I've never lived in, and do not believe I am capable of. I don't breathe the air on that planet. People have said that God never gives you anything that you can't handle, and I'm here to tell you that's the worst kind of bullshit-on-a-stick there is.
Compared to the Godzilla-like monsters that snatch up little babies and consume them before their heartbroken parents' eyes, Schuyler's is the fucking Cookie Monster. And that's good enough for me, thank you very much.
It felt like a really good interview; Greg's got a lot of experience with special needs kids, both personally and professionally, and it absolutely showed. I've talked to a variety of reporters since the book came out, and some of them were exceptionally sensitive and good, but with Greg, it was almost disconcerting, being interviewed by someone who really gets it. I'm curious as to how it's going to turn out; I suspect it's going to be outstanding. When we were doing the actual interview, I almost got a little weepy a few times. Not he-manly at all, I know. I suspect Greg was slipping estrogen into my water when I wasn't looking.
There's so much I want to talk about in more depth, such as the fact that I did a little book-for-movie exchange with Dan Habib, the father and filmmaker behind the brilliant documentary Including Samuel. I'll have much more to say about this, but for now, let me simply say that if you have any feelings or questions about inclusion and mainstreaming for special needs kids, you really do owe it to yourself to see his film. We're not in 100% lockstep agreement (you can probably imagine how I feel about the page in the film notes called "Words Matter", about person-first language), but we come to the same conclusions about the benefits of inclusion for these kids. Not just for my kids, but for yours, too. See this film if you get the opportunity, even if you find yourself opposed to inclusion education. Or especially if you're opposed to it, really.
In my book, I mention the polymicrogyria online support groups that I follow. I never contribute to them, probably out of something akin to misplaced guilt for Schuyler's comparatively good fortune, but I read them religiously. In Schuyler's Monster, I wrote about the heartbreak when a parent comes on the forum and reports the death of their child. There was one a few days ago; I showed it to Greg when he was here, and I think it made a powerful impression on him. Well, of course it did. If you're not touched by reading a parent's words as they report the death of their three year-old as a result of repeated, nasty seizures, there's something dead in your chest. You might want to go have that checked by a physician.
How does a parent watch their child die? How do they make peace with that, with their seemingly cruel or indifferent God and a world with such monsters in it? How do you bury your own son or daughter? People have been telling us how brave and how strong we are, but that's a world of brave and strong that I've never lived in, and do not believe I am capable of. I don't breathe the air on that planet. People have said that God never gives you anything that you can't handle, and I'm here to tell you that's the worst kind of bullshit-on-a-stick there is.
Compared to the Godzilla-like monsters that snatch up little babies and consume them before their heartbroken parents' eyes, Schuyler's is the fucking Cookie Monster. And that's good enough for me, thank you very much.
April 5, 2008
The John McMullen Show
I survived my first live radio experience with a minimum of anxiety this week. It was a longer interview than I've done before, and a little light on laughs, but he asked some questions that were different from past interviews, so that shook things up a little. Overall, I think the interview went pretty well.
Sadly, there were some weird technical issues that made the actual broadcast almost unlistenable. For some reason, the levels on my input kept getting louder and softer, over and over, as if I were walking around waving the phone like a maniac. In fact, I was sitting at my desk at work, with a minimum of maniacal gesturing, so I can only assume that there was something about my phone that was sabotaging the call. Stupid phone.
I did manage to get a clean copy from a nice person out there, and I went into iMovie and futzed around with the levels to try to minimize some of the weirdness. It still sounds a little strange, but I think it's at least listenable now.
Anyway, here it is.
Sadly, there were some weird technical issues that made the actual broadcast almost unlistenable. For some reason, the levels on my input kept getting louder and softer, over and over, as if I were walking around waving the phone like a maniac. In fact, I was sitting at my desk at work, with a minimum of maniacal gesturing, so I can only assume that there was something about my phone that was sabotaging the call. Stupid phone.
I did manage to get a clean copy from a nice person out there, and I went into iMovie and futzed around with the levels to try to minimize some of the weirdness. It still sounds a little strange, but I think it's at least listenable now.
Anyway, here it is.
April 3, 2008
Fancy pants LIVE
A few booky things for you this morning.
I'll be venturing into the terrifying world of live radio tomorrow, on The John McMullen Show in Palm Springs, California. (AM 970, 1140, 1250) If you live elsewhere but would still like to listen in and see if I'm going to drop an F bomb or throw up on the air, go to the K-News Radio 970 page for streaming audio. The show is on from 10am to noon, Pacific time. (Crap, now I have to do math.)
Next week, a reporter from a station in Houston is coming up to do a story on us. I'll keep you posted.
I've also got a live television appearance coming up on April 23, on a local Dallas area show, Good Morning Texas. The segment is called The Not So Perfect Parent. Schuyler might just make an appearance, so catch it if you can. If Schuyler has one predictable quality, it is her unpredictability. She loves chaos. I have no idea where she gets that.
I'll be venturing into the terrifying world of live radio tomorrow, on The John McMullen Show in Palm Springs, California. (AM 970, 1140, 1250) If you live elsewhere but would still like to listen in and see if I'm going to drop an F bomb or throw up on the air, go to the K-News Radio 970 page for streaming audio. The show is on from 10am to noon, Pacific time. (Crap, now I have to do math.)
Next week, a reporter from a station in Houston is coming up to do a story on us. I'll keep you posted.
I've also got a live television appearance coming up on April 23, on a local Dallas area show, Good Morning Texas. The segment is called The Not So Perfect Parent. Schuyler might just make an appearance, so catch it if you can. If Schuyler has one predictable quality, it is her unpredictability. She loves chaos. I have no idea where she gets that.
April 1, 2008
Is Schuyler a political pundit or a techie futurist?
This question was on Schuyler's home work. I'm still trying to decide what to make of her answer.
-----
New Things
The White House is where the U.S. president lives. Life in this building has changed over time. The White House got its first telephone in 1879. It got electric lights in 1891. An indoor swimming pool was added in 1942. The White House got its first fire alarm in 1965. After that came other new inventions such as computers and cell phone.
1. Make a prediction. What do you think the White House will get next?
Her answer?
"A brain hat."
-----
I asked her about the brain hat. She says it looks like a helmet, hers is yellow and mine is green. "Brain hat help you work."
Where did she get the idea that the current White House occupant needs a brain hat? I guess she's paying attention after all.
-----
New Things
The White House is where the U.S. president lives. Life in this building has changed over time. The White House got its first telephone in 1879. It got electric lights in 1891. An indoor swimming pool was added in 1942. The White House got its first fire alarm in 1965. After that came other new inventions such as computers and cell phone.
1. Make a prediction. What do you think the White House will get next?
Her answer?
"A brain hat."
-----
I asked her about the brain hat. She says it looks like a helmet, hers is yellow and mine is green. "Brain hat help you work."
Where did she get the idea that the current White House occupant needs a brain hat? I guess she's paying attention after all.
March 27, 2008
Eighteen years ago
(Quick book biz: I made a best-seller list, here in Dallas. Not the end-all hootenanny of hootenannies, I realize, but baby steps, I tell you. More stuff coming, too, so stay tuned. My plan to eventually install Schuyler as the Cyborg Queen of America is proceeding on schedule. Mwuh-ha-ha-ha...)
This week marked eighteen years since my father died. It wasn't exactly a sad anniversary; eighteen years is a long time, after all. It won't be long before I will have lived without him for longer than he was here, and not that much longer before I find myself having lived longer than he did. So I've had some time to come to terms with not just his death, but his life, and mine as well.
If you've read the book, you know better than others how many of my father's most egregious faults have become my own. I'm aware of them, and I've fallen prey to some but not all of them. I'm a better husband than my dad was, but not always by much (and fans of Chapter Seven know what I'm talking about), I'm a better diabetic by far, and while I have my father's temper, I watch it constantly and at the very least vent it in ways that don't hurt anyone. I'd like to do better with that temper, but I remember just how afraid I always was of my dad when I was Schuyler's age, and I won't allow her to feel that same fear, ever.
It's one of the reasons I refuse to spank/beat/whatever-word-you-like my kid, and to be honest, it's the same reason I don't think anyone else should, either. Who has the temperament and self-control to be trusted never to cross the line between discipline and abuse? You? Are you sure about that? I'd want to be pretty sure myself, but that's just me.
(Sorry, tangent. Settling down now.)
I'm working on a new project, and what started off as a book about fatherhood is turning into something more personal, sort of a fatherhood memoir, from my perspective as a father but also as a son. There are still other stories I am including, such as Paul and Gage Wayment, and Joseph and Rolf Mengele. But it's my own perspective as the father of a broken but extraordinary child and the son of an abusive but complex father that I find myself wanting, or perhaps needing, to explore.
I'm forty years old, and I'm working on a second memoir. How narcissistic is that?
Will anyone want to read it? Well, obviously I hope so. We'll see. I wasn't sure anyone would want to read about seven years in the life of a mute child, either. There are plenty of inspirational warm fuzzy fatherhood books out there. I don't know that the world needs another Tim Russert book, and if it does, I think Tim's probably got that one covered.
Eighteen years ago, standing at my father's graveside, I thought that perhaps I hated him, and that he certainly hated me. Almost two decades later, I know that I don't, and probably never did, not for long, anyway. As to how he felt about me, I find myself not much closer to that answer. He took that one to the grave with him. Which is perhaps just as well.
This week marked eighteen years since my father died. It wasn't exactly a sad anniversary; eighteen years is a long time, after all. It won't be long before I will have lived without him for longer than he was here, and not that much longer before I find myself having lived longer than he did. So I've had some time to come to terms with not just his death, but his life, and mine as well.
If you've read the book, you know better than others how many of my father's most egregious faults have become my own. I'm aware of them, and I've fallen prey to some but not all of them. I'm a better husband than my dad was, but not always by much (and fans of Chapter Seven know what I'm talking about), I'm a better diabetic by far, and while I have my father's temper, I watch it constantly and at the very least vent it in ways that don't hurt anyone. I'd like to do better with that temper, but I remember just how afraid I always was of my dad when I was Schuyler's age, and I won't allow her to feel that same fear, ever.
It's one of the reasons I refuse to spank/beat/whatever-word-you-like my kid, and to be honest, it's the same reason I don't think anyone else should, either. Who has the temperament and self-control to be trusted never to cross the line between discipline and abuse? You? Are you sure about that? I'd want to be pretty sure myself, but that's just me.
(Sorry, tangent. Settling down now.)
I'm working on a new project, and what started off as a book about fatherhood is turning into something more personal, sort of a fatherhood memoir, from my perspective as a father but also as a son. There are still other stories I am including, such as Paul and Gage Wayment, and Joseph and Rolf Mengele. But it's my own perspective as the father of a broken but extraordinary child and the son of an abusive but complex father that I find myself wanting, or perhaps needing, to explore.
I'm forty years old, and I'm working on a second memoir. How narcissistic is that?
Will anyone want to read it? Well, obviously I hope so. We'll see. I wasn't sure anyone would want to read about seven years in the life of a mute child, either. There are plenty of inspirational warm fuzzy fatherhood books out there. I don't know that the world needs another Tim Russert book, and if it does, I think Tim's probably got that one covered.
Eighteen years ago, standing at my father's graveside, I thought that perhaps I hated him, and that he certainly hated me. Almost two decades later, I know that I don't, and probably never did, not for long, anyway. As to how he felt about me, I find myself not much closer to that answer. He took that one to the grave with him. Which is perhaps just as well.
March 24, 2008
Mockingbird
A few quick book things to report. First of all, the book trailer I put together last year is being featured on the Barnes & Noble site, thanks to the tenacious work of the very cool Monica Katz at St. Martin's. I'm really happy with the continued support from St. Martin's. Also, while I am as "Fight the Man", pro-independent bookstore as anyone, I'll never say a word against Barnes & Noble, who have gotten behind the book in a big way.
Back in the spring of 2003, Jim Shelton at the New Haven Register in Connecticut did a feature about local bloggers, and was kind enough to write about me then. It was fun at the time, although the story of us changed rather dramatically a few months later when Schuyler was diagnosed with polymicrogyria and our world turned upside down. Last week, Jim called me up and we talked for a bit, and the result is a new story in the New Haven Register. It was a nicely done story, and it felt a little like a homecoming for me. I miss New Haven like mad.
Last night marked the end of Spring Break for Schuyler and me. Julie had to work most of the time, so we didn't go crazy this past week, but instead just sort of enjoyed the time together. We hung out, flew kites, watched a lot of Kim Possible (one of the few shows that Schuyler watches that i can stomach; it is the anti-Hannah Montana for me), and even went to a dog parade. It was a nice week.
After Schuyler went to bed last night, Julie and I watched To Kill a Mockingbird again. I can't tell you how many times I've seen it, or how many times I've read the book, for that matter. They seem like two parts of one whole experience, so perfectly matched as they are, in a way that is rare for books and their film adaptations.
I've loved that book most of my life, ever since the first time I read it back when I was probably about the same age as Jem Finch. And yet, in looking back on the years, it seems strange that I would have ever known that book or the film without associating them with Schuyler. I watch the movie now and I am aware of the relationship between the father and the daughter, the wild and different little girl who is curious about a world that is meaner than she is but which is also full of mysteries to be explored.
I always identified with the kid characters growing up, like just about anyone else who read it when they were young, but now I find myself experiencing the story from the perspective of the father. Atticus tells Scout that you can never truly understand someone until you see the world from their perspective, to climb in their skin and walk around in it for a little while. I think I finally understand.
It's an imperfect parallel, of course. Schuyler is herself equal parts Scout Finch and Boo Radley, and I am no Atticus Finch, although God knows I do try.
Back in the spring of 2003, Jim Shelton at the New Haven Register in Connecticut did a feature about local bloggers, and was kind enough to write about me then. It was fun at the time, although the story of us changed rather dramatically a few months later when Schuyler was diagnosed with polymicrogyria and our world turned upside down. Last week, Jim called me up and we talked for a bit, and the result is a new story in the New Haven Register. It was a nicely done story, and it felt a little like a homecoming for me. I miss New Haven like mad.
Last night marked the end of Spring Break for Schuyler and me. Julie had to work most of the time, so we didn't go crazy this past week, but instead just sort of enjoyed the time together. We hung out, flew kites, watched a lot of Kim Possible (one of the few shows that Schuyler watches that i can stomach; it is the anti-Hannah Montana for me), and even went to a dog parade. It was a nice week.
After Schuyler went to bed last night, Julie and I watched To Kill a Mockingbird again. I can't tell you how many times I've seen it, or how many times I've read the book, for that matter. They seem like two parts of one whole experience, so perfectly matched as they are, in a way that is rare for books and their film adaptations.
I've loved that book most of my life, ever since the first time I read it back when I was probably about the same age as Jem Finch. And yet, in looking back on the years, it seems strange that I would have ever known that book or the film without associating them with Schuyler. I watch the movie now and I am aware of the relationship between the father and the daughter, the wild and different little girl who is curious about a world that is meaner than she is but which is also full of mysteries to be explored.
I always identified with the kid characters growing up, like just about anyone else who read it when they were young, but now I find myself experiencing the story from the perspective of the father. Atticus tells Scout that you can never truly understand someone until you see the world from their perspective, to climb in their skin and walk around in it for a little while. I think I finally understand.
It's an imperfect parallel, of course. Schuyler is herself equal parts Scout Finch and Boo Radley, and I am no Atticus Finch, although God knows I do try.
March 21, 2008
Bok bok
Rather than make my usual, snotty and perhaps predictable "Zombie Jesus" jokes about Easter, I thought I'd remind everyone of the most persistent Easter memory most of us (or a certain age) still retain.
Well, okay, perhaps not the ONLY memory...
Well, okay, perhaps not the ONLY memory...
March 18, 2008
Aliens abducted my little girl and replaced her with a leggy tornado
Did THEY really think I wouldn't notice?
March 16, 2008
A Thousand Miles in a Ford Focus
I got back from the book tour a few days ago, and I've been getting caught up on work stuff, and Life stuff, for a few days. (The one thing I haven't gotten caught up on is email, so if you wrote to me within the past three weeks or so and are now thinking "Wow, what a dick!", I am going to answer your mail. I just don't want to respond with some pat little "Hey, thanks for writing, buddy. Buy my book!" Because then you'd be completely justified in thinking, "Wow, what a dick!" I don't mind you thinking that, I'd just like to earn it like in the old days.)
The book tour was a great experience in a lot of ways. There were a few with a big turnout and also a few with maybe a dozen or so people by the end, but I never had an event where the dreaded "what if you had a book signing and no one showed up?" occurred. I got to see writers I dig, like Gwen and Ariel, and a lot of old friends, and I got to meet people who touched me profoundly.
I've read a lot of critiques of the book tour as a marketing tool, and strictly speaking, I agree with much of what I've read. When you factor in travel expenses and hotels and all that, the sales you make on tour aren't going to even cover the cost of the tour itself. Perhaps the real value is in generating buzz and word of mouth, but still.
However, I wouldn't trade the experience of the book tour for anything. It's one thing to write about Schuyler's experiences and my own, and even to receive emails from the people who have been moved by those stories. It's quite another thing to meet people, however. I heard stories from parents who are in the place that we were with Schuyler a few years ago, a place with more questions than answers, and I cried with moms who were just happy to tell their story to someone. Never mind the fact that I was an author in my fancy pants. They were telling their story to someone who'd been there before them, and that was enough. What they didn't realize, perhaps, was how much I got from the experience.
So now it's over, and after driving over a thousand miles around Texas and feeling both very fancy and authorial one minute and then not one bit famous and fabulous at all the next, I'm home. Back to work, and back to play with Schuyler.
Yesterday I took Schuyler to see Horton Hears a Who, and when we got home, she took out her Big Box of Words. Together, we very carefully found all the words she needed (and spelled out a few not on the device), so that when Julie got home from work, Schuyler could tell her something very important she'd learned.
"A person's a person, no matter how small."
Today, Schuyler begins playing soccer, at a local program for special needs children. I took her to a sports supply place the other day and got her outfitted. We're taking Schuyler to play soccer today, and if you're a parent and that sounds like the most boring, every day, every kid sort of thing to write about, I agree.
It sure took a lot of work on Schuyler's part to get there, though.
The book tour was a great experience in a lot of ways. There were a few with a big turnout and also a few with maybe a dozen or so people by the end, but I never had an event where the dreaded "what if you had a book signing and no one showed up?" occurred. I got to see writers I dig, like Gwen and Ariel, and a lot of old friends, and I got to meet people who touched me profoundly.
I've read a lot of critiques of the book tour as a marketing tool, and strictly speaking, I agree with much of what I've read. When you factor in travel expenses and hotels and all that, the sales you make on tour aren't going to even cover the cost of the tour itself. Perhaps the real value is in generating buzz and word of mouth, but still.
However, I wouldn't trade the experience of the book tour for anything. It's one thing to write about Schuyler's experiences and my own, and even to receive emails from the people who have been moved by those stories. It's quite another thing to meet people, however. I heard stories from parents who are in the place that we were with Schuyler a few years ago, a place with more questions than answers, and I cried with moms who were just happy to tell their story to someone. Never mind the fact that I was an author in my fancy pants. They were telling their story to someone who'd been there before them, and that was enough. What they didn't realize, perhaps, was how much I got from the experience.
So now it's over, and after driving over a thousand miles around Texas and feeling both very fancy and authorial one minute and then not one bit famous and fabulous at all the next, I'm home. Back to work, and back to play with Schuyler.
Yesterday I took Schuyler to see Horton Hears a Who, and when we got home, she took out her Big Box of Words. Together, we very carefully found all the words she needed (and spelled out a few not on the device), so that when Julie got home from work, Schuyler could tell her something very important she'd learned.
"A person's a person, no matter how small."
Today, Schuyler begins playing soccer, at a local program for special needs children. I took her to a sports supply place the other day and got her outfitted. We're taking Schuyler to play soccer today, and if you're a parent and that sounds like the most boring, every day, every kid sort of thing to write about, I agree.
It sure took a lot of work on Schuyler's part to get there, though.
March 10, 2008
Jumping Monkeys
I've been looking forward to this for a while, because it's a program I've started listening to since I was a guest a few weeks ago, and I've really come to like it. I recorded a guest spot on a podcast called Jumping Monkeys, hosted by Megan Morrone and Leo Laporte, and they are running my program now. Go check it out, it's a lot of fun. It was easily the most fun I've had in an interview. Also, when you're done, check out their very funny interview with blogger Dad Gone Mad.
There's a funny story behind my Jumping Monkeys interview, by the way. When my publicist set this up, we worked out the date and time and I was given a phone number to call. When the time came and I sat down in a quiet office and called, it rang a few times and then suddenly I was hearing voices. It was the hosts, talking about no call lists.
I figured that like many stations, I was on hold and listening to a pre-recorded program instead of hold music. I'd certainly rather listen to Jumping Monkeys than, you know, Chariots of Fire on the pan flute, so I just sat back and listened while I waited for the program producer to pick up.
And that's when I heard it.
"Hey, speaking of calls, I hear Robert on the line!"
Oh, I'm live. I see!
Turns out, I had called directly into the program, and whether it was God or Fate or my Imaginary Friend in the Sky, some powerful force kept me from talking to myself or belching or practicing my F-bombs during that minute or so that I thought I was on hold. Aside from a slightly surprised "why hello there!" tone to my voice, I don't think you can even tell.
I tell you, I'm a cautionary tale just waiting to happen.
There's a funny story behind my Jumping Monkeys interview, by the way. When my publicist set this up, we worked out the date and time and I was given a phone number to call. When the time came and I sat down in a quiet office and called, it rang a few times and then suddenly I was hearing voices. It was the hosts, talking about no call lists.
I figured that like many stations, I was on hold and listening to a pre-recorded program instead of hold music. I'd certainly rather listen to Jumping Monkeys than, you know, Chariots of Fire on the pan flute, so I just sat back and listened while I waited for the program producer to pick up.
And that's when I heard it.
"Hey, speaking of calls, I hear Robert on the line!"
Oh, I'm live. I see!
Turns out, I had called directly into the program, and whether it was God or Fate or my Imaginary Friend in the Sky, some powerful force kept me from talking to myself or belching or practicing my F-bombs during that minute or so that I thought I was on hold. Aside from a slightly surprised "why hello there!" tone to my voice, I don't think you can even tell.
I tell you, I'm a cautionary tale just waiting to happen.
March 9, 2008
Schuyler in the Dallas Morning News
"New book chronicles Plano girl's battle with disability that's left her unable to speak" - Dallas Morning News (March 8, 2008). Annette Nevins reporting.
---
With apologies to everyone else who has written about Schuyler over the past few weeks and months, I have to say that this story, which apparently ran in yesterday's Dallas Morning News, is my favorite so far, if for no other reason than the video. We pretty much disrupted class for the better part of a morning to get this, so I'm glad it worked out. (I hadn't disrupted a class and gotten away with it in a long time, so it was nostalgic. And I didn't even have to make any fake fart noises to do it, either.)
Today is my signing in Austin, at the store where I once toiled for The Man. Funny how things turn out sometimes.
---
With apologies to everyone else who has written about Schuyler over the past few weeks and months, I have to say that this story, which apparently ran in yesterday's Dallas Morning News, is my favorite so far, if for no other reason than the video. We pretty much disrupted class for the better part of a morning to get this, so I'm glad it worked out. (I hadn't disrupted a class and gotten away with it in a long time, so it was nostalgic. And I didn't even have to make any fake fart noises to do it, either.)
Today is my signing in Austin, at the store where I once toiled for The Man. Funny how things turn out sometimes.
March 7, 2008
"Say a little prayer for Mister Fancy Pants..."
First things first. Last week, I was interviewed by Jennifer Stayton at KUT Radio, the NPR station in Austin. Her story, "Taming a Hidden Monster", ran during Friday's Morning Edition, I believe.
I'll warn you, it's a little disconcerting. Since there's no introductory material included with the clip, it just goes right into it. Also, I'm stammering like a head injury patient, for some reason. (I recorded the interview at KERA in Dallas, so while it was live, I wasn't actually looking at the reporter, but instead was facing a big, intimidating, floofy microphone. For some reason, that made me nervous.) Other than that, I like how it turned out, especially the reading at the end. She actually got a little choked up when I read it, but that part didn't make it into the story, which I think is a pity. They also edited out the section of the reading where I got to drop a big fat F-bomb. I guess they enjoy their FCC license. Big babies.
So I'm sitting here in my hotel room in Houston, living a life of fancy pantsedness that you can probably only dream of. The glamor of a book tour is hard to describe in mere words; the empty Popeye's bag in the trash can will have to tell the tale for me. I went down to the hotel bar, but I'm staying near the airport and the collection of sad, half-buzzed businessmen didn't hold so much appeal for me as I thought it might. I reluctantly gave up the promise of that glitzy scene and came back up to my room to post for you fine people instead, because as you know, my biggest flaw? I care TOO MUCH.
I do have a traveling companion, however. Jasper 1.0 joined me on this trip, sitting smartly in the passenger seat the whole way down. Now that I've gotten accustomed to his one eye and his rough-chewed edges, I find myself becoming weirdly protective of him and his reputation. Perhaps I need to find some human friends tomorrow when I get to Austin.
I made an important decision about the Jaspers. When I get back to Plano, I'm going to come clean with Schuyler. I might even do it tomorrow morning via video conferencing, which Julie and I made work tonight, thanks to the magic of iChat. That would blow Schuyler's little mind. Julie already began explaining what happened to her earlier this evening, and she said that Schuyler seemed unconcerned. I'll show her Old Jasper and explain that he's delicate now and is going to retire up on a shelf of honor, so New Jasper is going to step in and take on his duties. Sort of like Joe and Steve on Blue's Clues, if Steve Burns had left the show due to a disfiguring accident.
Don't ask me why I feel so guilty about trying to deceive Schuyler regarding the Jaspers. I think it bothers me because I seem to have gotten away with it. I think I would feel better about it if she'd called me on my bullshit.
I'll warn you, it's a little disconcerting. Since there's no introductory material included with the clip, it just goes right into it. Also, I'm stammering like a head injury patient, for some reason. (I recorded the interview at KERA in Dallas, so while it was live, I wasn't actually looking at the reporter, but instead was facing a big, intimidating, floofy microphone. For some reason, that made me nervous.) Other than that, I like how it turned out, especially the reading at the end. She actually got a little choked up when I read it, but that part didn't make it into the story, which I think is a pity. They also edited out the section of the reading where I got to drop a big fat F-bomb. I guess they enjoy their FCC license. Big babies.
So I'm sitting here in my hotel room in Houston, living a life of fancy pantsedness that you can probably only dream of. The glamor of a book tour is hard to describe in mere words; the empty Popeye's bag in the trash can will have to tell the tale for me. I went down to the hotel bar, but I'm staying near the airport and the collection of sad, half-buzzed businessmen didn't hold so much appeal for me as I thought it might. I reluctantly gave up the promise of that glitzy scene and came back up to my room to post for you fine people instead, because as you know, my biggest flaw? I care TOO MUCH.
I do have a traveling companion, however. Jasper 1.0 joined me on this trip, sitting smartly in the passenger seat the whole way down. Now that I've gotten accustomed to his one eye and his rough-chewed edges, I find myself becoming weirdly protective of him and his reputation. Perhaps I need to find some human friends tomorrow when I get to Austin.
I made an important decision about the Jaspers. When I get back to Plano, I'm going to come clean with Schuyler. I might even do it tomorrow morning via video conferencing, which Julie and I made work tonight, thanks to the magic of iChat. That would blow Schuyler's little mind. Julie already began explaining what happened to her earlier this evening, and she said that Schuyler seemed unconcerned. I'll show her Old Jasper and explain that he's delicate now and is going to retire up on a shelf of honor, so New Jasper is going to step in and take on his duties. Sort of like Joe and Steve on Blue's Clues, if Steve Burns had left the show due to a disfiguring accident.
Don't ask me why I feel so guilty about trying to deceive Schuyler regarding the Jaspers. I think it bothers me because I seem to have gotten away with it. I think I would feel better about it if she'd called me on my bullshit.
March 6, 2008
Jasper 2.0
Either I got away with it, or she doesn't particularly care one way or the other. Welcome to the fam, Jasper the Second.
March 5, 2008
Le Roi est mort. Vive le Roi.
It was perhaps tragically fitting that my last post included a photo of Schuyler with her beloved friend Jasper. If you've read the book, or if you've been around for a while, you know that Jasper is Schuyler's oldest inanimate friend.
He was originally purchased while Julie was pregnant so that he could ride around in my car with me and let me see if I could ever get accustomed to the name "Jasper" in case we had a boy. I couldn't, of course (could you?), but the name stuck, and after a period of rejection by Baby Schuyler, he eventually became one of her most treasured friends. She even insisted on a girlfriend for him. (They have a baby bear, too.)
Julie and Schuyler fell asleep on the big floofy chair in the living room tonight, and at some point, Jasper slipped from Schuyler's grasp and fell to the floor, met by the gaping, slobbery maw of Max, Schuyler's very very very bad little dog. The rest you can probably figure out.
I looked over and saw the tragedy unfolding before it could get very far, and I managed to snatch poor Jasper up and take him to the other room before Schuyler could notice. The damage wasn't horrible, but it was bad enough. Ears chewed, one foot stripped of its fur, and most horribly, an eye completely missing. Jasper had been disfigured to an extent that couldn't be fixed.
Well, this is one of those parenting moments where they don't exactly tell you what you're supposed to do, now isn't it? What's the right thing to do here? Let Schuyler face the ugly truth and see what her nasty little hellhound had done to her best friend? Or run to the mall and pray that the Gap (Jasper's port of origin) would carry another that looked like him and try to slip a new Jasper 2.0 past Schuyler? In general, I am all about letting Schuyler see the world in all its grandness and all its pain at the same time, but tonight, I just couldn't do it. Ten minutes to drive to the mall, five minutes in and out of the store, and a sly switcheroo after she had crawled into bed in which she accepted the doppelgänger under darkened conditions, and the deed was done.
We'll see if it worked in the morning. These little Gap bears all seem to be a little different (lovingly hand-crafted by Chinese slave labor, no doubt), and Jasper Mark II looks a little different from his now one-eyed predecessor. Julie and I aren't in agreement on this, by the way. She feels like Schuyler is tough and could deal with the truth. I guess I agree, but then, I feel like she gets to handle the tough truths a lot. I will say that if Schuyler isn't fooled and notices the difference, then I'll come clean with her.
As for poor old Jasper, I think I'll take him on the book tour with me, one last hurrah for the little guy, and then maybe get him an eye patch and seal him up for the future, to be given to Schuyler when she's older and ready for a foolish, sentimental gift from her old man.
This was a tough call. There are times for me, I suppose, when honesty in parenting takes a back seat to the preservation of the fragile world that Schuyler creates. I'm not sure myself if this was the right thing to do. I only know that there's a lot I'll do in this world, right or wrong, to make Schuyler happy.
Happy trails, Jasper...
He was originally purchased while Julie was pregnant so that he could ride around in my car with me and let me see if I could ever get accustomed to the name "Jasper" in case we had a boy. I couldn't, of course (could you?), but the name stuck, and after a period of rejection by Baby Schuyler, he eventually became one of her most treasured friends. She even insisted on a girlfriend for him. (They have a baby bear, too.)
Julie and Schuyler fell asleep on the big floofy chair in the living room tonight, and at some point, Jasper slipped from Schuyler's grasp and fell to the floor, met by the gaping, slobbery maw of Max, Schuyler's very very very bad little dog. The rest you can probably figure out.
I looked over and saw the tragedy unfolding before it could get very far, and I managed to snatch poor Jasper up and take him to the other room before Schuyler could notice. The damage wasn't horrible, but it was bad enough. Ears chewed, one foot stripped of its fur, and most horribly, an eye completely missing. Jasper had been disfigured to an extent that couldn't be fixed.
Well, this is one of those parenting moments where they don't exactly tell you what you're supposed to do, now isn't it? What's the right thing to do here? Let Schuyler face the ugly truth and see what her nasty little hellhound had done to her best friend? Or run to the mall and pray that the Gap (Jasper's port of origin) would carry another that looked like him and try to slip a new Jasper 2.0 past Schuyler? In general, I am all about letting Schuyler see the world in all its grandness and all its pain at the same time, but tonight, I just couldn't do it. Ten minutes to drive to the mall, five minutes in and out of the store, and a sly switcheroo after she had crawled into bed in which she accepted the doppelgänger under darkened conditions, and the deed was done.
We'll see if it worked in the morning. These little Gap bears all seem to be a little different (lovingly hand-crafted by Chinese slave labor, no doubt), and Jasper Mark II looks a little different from his now one-eyed predecessor. Julie and I aren't in agreement on this, by the way. She feels like Schuyler is tough and could deal with the truth. I guess I agree, but then, I feel like she gets to handle the tough truths a lot. I will say that if Schuyler isn't fooled and notices the difference, then I'll come clean with her.
As for poor old Jasper, I think I'll take him on the book tour with me, one last hurrah for the little guy, and then maybe get him an eye patch and seal him up for the future, to be given to Schuyler when she's older and ready for a foolish, sentimental gift from her old man.
This was a tough call. There are times for me, I suppose, when honesty in parenting takes a back seat to the preservation of the fragile world that Schuyler creates. I'm not sure myself if this was the right thing to do. I only know that there's a lot I'll do in this world, right or wrong, to make Schuyler happy.
Sick day
As I write this, Schuyler has been asleep for about thirteen hours straight. She was sent home from school yesterday with a temp of 100.3, and while she spent the day at home with Julie in good spirits and seemed to be her usual happy self when I got home from work, she crawled into our bed at about 6 last night and is still there now.
It's interesting to me how much energy seems to get sapped out of the world when Schuyler is sick. It makes me realize exactly how much of my own attitude and enthusiasm is drawn from her. Anyone who has met Schuyler knows what I'm talking about. Her energy is contagious. Here's hoping that whatever has her laid out for thirteen hours (and counting) isn't.
I take off for my book tour in two days. Houston on Saturday, over to Austin on Sunday, and then San Antonio on Tuesday. If you're in town for any of these, come out and say hello. I'm looking forward to this as much as anyone looks forward to driving over 800 miles in five days. There are a lot of people I'm looking forward to seeing on this trip, and I'm really excited about meeting new folks as well. My social circle in Plano is pretty limited. (And short, and mute.)
It's interesting to me how much energy seems to get sapped out of the world when Schuyler is sick. It makes me realize exactly how much of my own attitude and enthusiasm is drawn from her. Anyone who has met Schuyler knows what I'm talking about. Her energy is contagious. Here's hoping that whatever has her laid out for thirteen hours (and counting) isn't.
I take off for my book tour in two days. Houston on Saturday, over to Austin on Sunday, and then San Antonio on Tuesday. If you're in town for any of these, come out and say hello. I'm looking forward to this as much as anyone looks forward to driving over 800 miles in five days. There are a lot of people I'm looking forward to seeing on this trip, and I'm really excited about meeting new folks as well. My social circle in Plano is pretty limited. (And short, and mute.)
March 3, 2008
"Positively TEXAS!"
Another TV moment, from "Positively TEXAS!" on CBS 11 in Dallas, hosted by Iola Johnson. I didn't expect it to run until next weekend, but my DVR is apparently smarter than I am.
This interview felt a little awkward, for some reason. Perhaps it was all those extra chins I wore that day. Good lord.
March 2, 2008
Media mentions
(Photo by Bruce Maxwell, Star-Telegram)
Two quick media moments for the scrapbook:
1) There's a story in today's Fort Worth Star-Telegram, called 'Schuyler's Monster' gives voice to family. I know I'm not exactly objective, but could that photo of Schuyler be any cuter? Also, she is kind enough to mostly cover my entirely uncute face, which I do appreciate. Trust me, you do, too.
2) I can't believe I forgot to mention this back when it ran, but I was the subject of a Quirky Nomads podcast, in which I read from an entry from this here blog o' mine. (I need to learn how to read without sounding like I'm recovering from a head injury.)
March 1, 2008
"Don't believe you're all alone."
I've mentioned it before, but there's a line that I love from a song sung by my favorite musician, Andrew Bird, in a cover of a song by The Handsome Family. The song is called Don't Be Scared, and seems to be (at least to my ears) about a child who lives mostly in an internal world and who perceives our world differently. The line that always reminds me of Schuyler is this one:
"Don't be scared. Don't believe you're all alone."
I frequently think about Schuyler being alone, which is interesting only in that practically speaking, she is almost never actually alone in an immediate sense, aside from when she plays in her room by herself. Even then, I get a little nervous, because one of my greatest fears is that the seizures that she is statistically likely to develop could land on her while she's by herself, and the thought of her going through that for the first time without someone there with her makes me want to go roust her out of her bed this very moment and keep her by my side until I grow old and die, and not let her go one second before.
In a larger sense, I worry about what will happen to Schuyler after we're gone. I think about her having to make her way in this mean fucking world, and I almost can't stand it. It's funny how fear and love go hand in hand so often in our lives. The very act of opening up your heart to another human being can also reveal such vulnerability and rawness that to contemplate abusing it feels like imagining a murder. Or a suicide.
Yesterday I watched Schuyler charge through her little world as a reporter, a photographer and a videographer from the Dallas Morning News followed her around at school. I was once again reminded how easily she adapts to change, how in fact she thrives on it. Schuyler only seems to stumble when things become too routine; her world thrills her when it throws her curve balls.
I envy that about her. Last night, I attended a local music showcase and got to hang out with a newish friend whose media work I've always admired, and I had a great time being me for a change, not The Author or The Father or anything else. And yet, I was still aware the whole time of how shy and unwieldy I can feel in unfamiliar social situations. Sometimes I feel like Bigfoot, dressed up like a normal person and trying to fit in despite being, well, a big clumsy monster. It is in those moments that I appreciate Schuyler's breezy ability to embrace the world on her own terms.
In my dreams, Schuyler talks to me, telling me that things are going to be okay. I think she means more than just her own monster battle.
"Don't be scared. Don't believe you're all alone."
I frequently think about Schuyler being alone, which is interesting only in that practically speaking, she is almost never actually alone in an immediate sense, aside from when she plays in her room by herself. Even then, I get a little nervous, because one of my greatest fears is that the seizures that she is statistically likely to develop could land on her while she's by herself, and the thought of her going through that for the first time without someone there with her makes me want to go roust her out of her bed this very moment and keep her by my side until I grow old and die, and not let her go one second before.
In a larger sense, I worry about what will happen to Schuyler after we're gone. I think about her having to make her way in this mean fucking world, and I almost can't stand it. It's funny how fear and love go hand in hand so often in our lives. The very act of opening up your heart to another human being can also reveal such vulnerability and rawness that to contemplate abusing it feels like imagining a murder. Or a suicide.
Yesterday I watched Schuyler charge through her little world as a reporter, a photographer and a videographer from the Dallas Morning News followed her around at school. I was once again reminded how easily she adapts to change, how in fact she thrives on it. Schuyler only seems to stumble when things become too routine; her world thrills her when it throws her curve balls.
I envy that about her. Last night, I attended a local music showcase and got to hang out with a newish friend whose media work I've always admired, and I had a great time being me for a change, not The Author or The Father or anything else. And yet, I was still aware the whole time of how shy and unwieldy I can feel in unfamiliar social situations. Sometimes I feel like Bigfoot, dressed up like a normal person and trying to fit in despite being, well, a big clumsy monster. It is in those moments that I appreciate Schuyler's breezy ability to embrace the world on her own terms.
In my dreams, Schuyler talks to me, telling me that things are going to be okay. I think she means more than just her own monster battle.
February 27, 2008
Comedy monster
My favorite moment from the Weekend America interview didn't actually make it into the broadcast. Reporter Michael May was asking Schuyler questions about how she communicated. She was giving some of her answers on her device, but she was also verbalizing a lot. I was there to help translate, as her words can be hard for the uninitiated to understand.
"Schuyler, how did you talk before you got your device?" he asked.
She thought about it for a few moments, trying to remember back that far. Finally she held up her hands.
"My hands!" she said, indicating that she was learning sign language before she got her Big Box of Words.
As she answered, a smile crept across her face. She then held up her feet and pointed to them, cracking herself up as she answered.
"But not my feet!"
"Schuyler, how did you talk before you got your device?" he asked.
She thought about it for a few moments, trying to remember back that far. Finally she held up her hands.
"My hands!" she said, indicating that she was learning sign language before she got her Big Box of Words.
As she answered, a smile crept across her face. She then held up her feet and pointed to them, cracking herself up as she answered.
"But not my feet!"
February 25, 2008
February 24, 2008
What's on TV?
"Think" on KERA Channel 13, Dallas.
(Hosted by the very cool Krys Boyd.)
Topic A Father's Journey with His Wordless Daughter
Guest Robert Rummel-Hudson, Peter Brown, & Kent Haruf
Description What can we learn about tenacity and joy from children, even when they're unable to communicate verbally? Robert Rummel-Hudson, whose daughter was diagnosed at age 3 with polymicrogyria, a rare disorder that leaves her unable to speak, will join us this evening to discuss his family's triumphs in the face of an extraordinary challenge. His book is "Schuyler's Monster: A Father's Journey with His Wordless Daughter" (St. Martin's Press, 2008).
February 23, 2008
Media for Monsters
Yep, that's People Magazine. Obviously, this was very cool.
American Public Media's Weekend America has posted their story about Schuyler, which you can also listen to on the page or via a podcast. (I tried embedding it here, but apparently I am not so bright.)
Speaking of being not so bright, apparently I fooled at least one person. I appeared on Think last night, and in a followup to D Magazine's Frontburner, the host, Krys Boyd, said, "He's great. Funny and candid and very, very sharp."
Which was also very, very cool. Usually I'm sharp like a Weeble, so it's nice to know I can pull myself together when necessary. I'll post the interview whenever it becomes available.
If you were considering coming to either of my book signings but decided against it, you missed what can only be described as Extreme Schuyler. On Friday night, she was rambunctious and crazy and starring in her own little variety hour special. The crowd was packed with people who know and love her, including my family, so it was to be expected. At today's signing, she became an unashamed capitalist, sitting beside me at the signing table and smartly handing the book to people as they walked up. She even participated in the signing, using funky pens made for her by one of her teachers.
If you were to suspect that I have never in my life had a prouder moment than the one in which I sat in a Barnes & Noble autographing copies of my book with Schuyler signing them right alongside me, well, you'd be correct.
February 22, 2008
Pimping my stuff like Chelsea, yo.
This weekend's media fun:
Think (KERA 13, Dallas) -- Friday, February 22, 2008, 7:30 pm
What can we learn about tenacity and joy from children, even when they're unable to communicate verbally? Robert Rummel-Hudson, whose daughter was diagnosed at age 3 with polymicrogyria – a rare disorder that leaves her unable to speak, will join us this evening to discuss his family's triumphs in the face of an extraordinary challenge. His book is "Schuyler’s Monster: A Father's Journey with His Wordless Daughter" (St. Martin’s Press, 2008).
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Weekend America (American Public Media) -- Saturday, February 23, 2008
Where to Listen
Podcasts and RSS feeds
Think (KERA 13, Dallas) -- Friday, February 22, 2008, 7:30 pm
What can we learn about tenacity and joy from children, even when they're unable to communicate verbally? Robert Rummel-Hudson, whose daughter was diagnosed at age 3 with polymicrogyria – a rare disorder that leaves her unable to speak, will join us this evening to discuss his family's triumphs in the face of an extraordinary challenge. His book is "Schuyler’s Monster: A Father's Journey with His Wordless Daughter" (St. Martin’s Press, 2008).
----
Weekend America (American Public Media) -- Saturday, February 23, 2008
Where to Listen
Podcasts and RSS feeds
February 21, 2008
Surreality Show
I'm finally getting a moment to sit down and actually update, after a busy week in New York. I arrived on Tuesday, after a flight through high winds so bad that there were no fewer that THREE people utilizing barf bags, one of them sitting in the row in front of me. Being in the back of the plane makes for an especially wild ride in high winds, although I must confess, I thought it was a lot of fun, aside from the entirely unwelcome puke whiff.
Tuesday evening was as surreal as any I've ever experienced. Michael Malice is now a New York Times bestselling author, but he remembered what it felt like the first time he was published, so when he showed up at my hotel, he knew exactly where to take me: on a quick tour of Manhattan bookstores to actually see the book on the shelves and, you know, take photos of it. I'll be cool one day, and maybe even all jaded about the whole writing process, but for now, I can allow myself an evening of extreme dorkitude and enjoy the moment like a tourist in my own life.
(My favorite moment came when a security guard at the Barnes & Noble at Union Square told us we couldn't take photos. Michael explained that I was the author of the book. "I don't care," the guard said. "You can't take photos in the store." I thought that was awesome. My fancy pants did not dazzle him in the least.)
Not once but TWICE during the evening, I was actually recognized on the street outside two different bookstores. Imagine my ego as a giant blimp, filled to bursting with equal parts self-importance, terror and an appreciation for the absurd.
The book release party itself was great. I got to meet a lot of people I'd only known online previously, and the number of old friends who showed up was staggering. I can't tell you the last time I wore a suit, on that wasn't a rental, anyway. but I think I cleaned up okay for the occasion. All in all, it was an amazing way to kick off the book's release. I felt like the pretty girl at the prom.
There have been a lot of really nice things written about the book by my friends in the past several days. Here are just a few:
Pamie (for the Dewey Donation System, which I'm very happy to be contributing to this year, in the form of a signed copy of the book as a prize for donations)
Omar (who contributes to the expansion of my ego to near-critical levels on a regular basis)
Erin (who shares her own memories of a pivotal part of the book, and her feelings about Schuyler)
John Scalzi (whose writerly opinion means a lot to me)
Michael Malice (sharing his thoughts on our whirlwind tour of Manhattan bookstores, and on how how our friendship seemed unlikely but turned out to be almost inevitable)
(EDITED TO ADD) Chris Naze (one of the very early friends who I met online; we are either Old Skool, or just old.)
Now I'm sitting in the lobby of my hotel, waiting for a car to come pick me up, and I'm torn between the feeling that I just got here, so there's no way that it's already time to leave, and the very real absence in my life of my family, and particularly of a little girl whose presence I feel next to me constantly, even when she's so far away.
Tuesday evening was as surreal as any I've ever experienced. Michael Malice is now a New York Times bestselling author, but he remembered what it felt like the first time he was published, so when he showed up at my hotel, he knew exactly where to take me: on a quick tour of Manhattan bookstores to actually see the book on the shelves and, you know, take photos of it. I'll be cool one day, and maybe even all jaded about the whole writing process, but for now, I can allow myself an evening of extreme dorkitude and enjoy the moment like a tourist in my own life.
(My favorite moment came when a security guard at the Barnes & Noble at Union Square told us we couldn't take photos. Michael explained that I was the author of the book. "I don't care," the guard said. "You can't take photos in the store." I thought that was awesome. My fancy pants did not dazzle him in the least.)
Not once but TWICE during the evening, I was actually recognized on the street outside two different bookstores. Imagine my ego as a giant blimp, filled to bursting with equal parts self-importance, terror and an appreciation for the absurd.
The book release party itself was great. I got to meet a lot of people I'd only known online previously, and the number of old friends who showed up was staggering. I can't tell you the last time I wore a suit, on that wasn't a rental, anyway. but I think I cleaned up okay for the occasion. All in all, it was an amazing way to kick off the book's release. I felt like the pretty girl at the prom.
There have been a lot of really nice things written about the book by my friends in the past several days. Here are just a few:
Pamie (for the Dewey Donation System, which I'm very happy to be contributing to this year, in the form of a signed copy of the book as a prize for donations)
Omar (who contributes to the expansion of my ego to near-critical levels on a regular basis)
Erin (who shares her own memories of a pivotal part of the book, and her feelings about Schuyler)
John Scalzi (whose writerly opinion means a lot to me)
Michael Malice (sharing his thoughts on our whirlwind tour of Manhattan bookstores, and on how how our friendship seemed unlikely but turned out to be almost inevitable)
(EDITED TO ADD) Chris Naze (one of the very early friends who I met online; we are either Old Skool, or just old.)
Now I'm sitting in the lobby of my hotel, waiting for a car to come pick me up, and I'm torn between the feeling that I just got here, so there's no way that it's already time to leave, and the very real absence in my life of my family, and particularly of a little girl whose presence I feel next to me constantly, even when she's so far away.
February 17, 2008
Sighting in Baton Rouge
Schuyler's Monster
Originally uploaded by Elizalou
How cool is THAT? (Thanks to my good friend Eliza...)
February 16, 2008
Monster Days
Today the book insanity begins in earnest, or at least the part that takes place in the real world rather than the one that looks out at my from my screen here. Until now, most of the excitement of this whole book experience has taken place online. It has all felt almost virtual, like becoming emperor in Civilization. Ruling the world is nice, but defeating the Visigoths doesn't mean you don't have to stop to heat up some Chef Boyardee for your kid.
Today it all steps into the real world. A reporter from a public radio show called Weekend America is going to spend the morning with Schuyler and myself. (Julie will be at work, which is fine with her; as always, she prefers to be the silent partner.) I feel sort of bad about how the day is starting off; thunderstorms are rolling through and are probably going to wreck the better part of the day. I hope our crapy little apartment makes for compelling radio.
The next couple of weeks are going to be hectic, in the best possible way. Tuesday is the big release day, of course, although the book is already making its way to some stores (and is even being delivered to the UK by Amazon, apparently). I'll be getting up bright and early that day to fly to New York City, for the Mediabistro Book Release Party on Wednesday. Then I fly back to Dallas on Thursday.
Friday will begin with a bang. I'll be in the tv studio at our local PBS station, recording a segment for Think, a show that I actually like a great deal. Then, later that day, I'll be recording a podcast interview for Jumping Monkeys (and how often do you get to say that?), before ending the day with a reading and signing at Julie's store. The next day, I'll have another signing at another Barnes & Noble in Dallas.
Next week will include another tv appearance, on a local CBS show called Positively TEXAS!, and a return to the public radio station for a taped interview for KUT Radio in Austin. March will start off with more book signings in Arlington, Houston, Austin and San Antonio. And at some time in all this, People Magazine will be reviewing the book, hopefully without employing words like "crap" or "suck" in the process.
It's exciting and terrifying, all of it. And yet, in the midst of it all, real life goes on. With everything that is happening, the thing I find myself wanting to tell you about is how Schuyler had a week in which she was out of school on Monday and without her device for an evening (hers had to be sent back after the screen failed, and the loaner didn't arrive until the next day), and yet she still managed to come back on Friday and do really well on her spelling test. I'm a little embarrassed to say that she exceeded my own expectations, which is what she does on a regular basis to just about everyone, really. We believe in Schuyler because we know how tenacious she is, but we also fear her monster, in ways that she never does. Schuyler never fails us, and yet our fear for her still persists, and shakes our faith, to our shame.
And that, my friends, is what my life is like. It's one in which there's a book, and a little girl, and an invisible monster that still colors every aspect of our lives, both good and bad. All this book business is exciting and surreal and wonderful. I don't take a bit of it for granted, not for a moment, and I'm incredibly grateful for every moment of it. But there's a reality here, the same one that is omnipresent through every good day and every bad one.
It's the thing that sits silently watching through it all, the thing that made all this happen and yet the thing that I'd trade away every bit of this new success, just to be rid of it. I'd give it all up without hesitation, just to hear Schuyler say "Good morning" when she wakes up in a few hours, or to watch her talk about Hannah Montana with her friends, or to take away the lurking phantom of seizures that haunts her future.
I love that Schuyler's Monster is doing so well, but I hate that Schuyler's monster is, too.
Today it all steps into the real world. A reporter from a public radio show called Weekend America is going to spend the morning with Schuyler and myself. (Julie will be at work, which is fine with her; as always, she prefers to be the silent partner.) I feel sort of bad about how the day is starting off; thunderstorms are rolling through and are probably going to wreck the better part of the day. I hope our crapy little apartment makes for compelling radio.
The next couple of weeks are going to be hectic, in the best possible way. Tuesday is the big release day, of course, although the book is already making its way to some stores (and is even being delivered to the UK by Amazon, apparently). I'll be getting up bright and early that day to fly to New York City, for the Mediabistro Book Release Party on Wednesday. Then I fly back to Dallas on Thursday.
Friday will begin with a bang. I'll be in the tv studio at our local PBS station, recording a segment for Think, a show that I actually like a great deal. Then, later that day, I'll be recording a podcast interview for Jumping Monkeys (and how often do you get to say that?), before ending the day with a reading and signing at Julie's store. The next day, I'll have another signing at another Barnes & Noble in Dallas.
Next week will include another tv appearance, on a local CBS show called Positively TEXAS!, and a return to the public radio station for a taped interview for KUT Radio in Austin. March will start off with more book signings in Arlington, Houston, Austin and San Antonio. And at some time in all this, People Magazine will be reviewing the book, hopefully without employing words like "crap" or "suck" in the process.
It's exciting and terrifying, all of it. And yet, in the midst of it all, real life goes on. With everything that is happening, the thing I find myself wanting to tell you about is how Schuyler had a week in which she was out of school on Monday and without her device for an evening (hers had to be sent back after the screen failed, and the loaner didn't arrive until the next day), and yet she still managed to come back on Friday and do really well on her spelling test. I'm a little embarrassed to say that she exceeded my own expectations, which is what she does on a regular basis to just about everyone, really. We believe in Schuyler because we know how tenacious she is, but we also fear her monster, in ways that she never does. Schuyler never fails us, and yet our fear for her still persists, and shakes our faith, to our shame.
And that, my friends, is what my life is like. It's one in which there's a book, and a little girl, and an invisible monster that still colors every aspect of our lives, both good and bad. All this book business is exciting and surreal and wonderful. I don't take a bit of it for granted, not for a moment, and I'm incredibly grateful for every moment of it. But there's a reality here, the same one that is omnipresent through every good day and every bad one.
It's the thing that sits silently watching through it all, the thing that made all this happen and yet the thing that I'd trade away every bit of this new success, just to be rid of it. I'd give it all up without hesitation, just to hear Schuyler say "Good morning" when she wakes up in a few hours, or to watch her talk about Hannah Montana with her friends, or to take away the lurking phantom of seizures that haunts her future.
I love that Schuyler's Monster is doing so well, but I hate that Schuyler's monster is, too.
February 12, 2008
Perfect Storm
When I went to bed last night, I was aware of the possibility of thunderstorms moving through the area, but when they arrived in the middle of the night, they announced themselves like something from a 1950's monster movie. If there was any slow buildup, we slept through it, right up until the bright flash and deafening BOOM that awakened us in a chaotic frenzy of vaguely coherent obscenities.
A few seconds later, Schuyler was standing in the doorway.
The comparison to a monster movie is a good one for her, actually. One of the things that Schuyler and I share is a love for those movies and, more generally, the thrill of being scared. (Julie has been successfully vetoing my taking Schuyler to see Cloverfield for weeks now.) When we watch a scary movie, Schuyler will cower behind a blanket and make little whimpery sounds, but if I try to turn it off or change the channel, she gets well and truly pissed off. She has always been a thrill junkie.
Thunderstorms are like scary movies for Schuyler. Even at 3 o'clock in the morning, once she's found her way to our bed, she's as happy as she can be as the lightning flashes and the thunder shakes the windows. She "wow"s at the lightening and the rain hitting the window so hard that it sounds like hail, and she squeals and giggles after the thunder. As sleepy as I am at that hour and as much as I know how zombiesque we'll all be the next morning, I still can't help but stay awake and watch her little face, illuminated by the steady flicker from the storm. I don't need words from her to see how happy she is when the storms rattle our world.
Middle of the night storms are like monster movies that appear out of nowhere, and I love them unconditionally, probably for the same reasons Schuyler does.
A few seconds later, Schuyler was standing in the doorway.
The comparison to a monster movie is a good one for her, actually. One of the things that Schuyler and I share is a love for those movies and, more generally, the thrill of being scared. (Julie has been successfully vetoing my taking Schuyler to see Cloverfield for weeks now.) When we watch a scary movie, Schuyler will cower behind a blanket and make little whimpery sounds, but if I try to turn it off or change the channel, she gets well and truly pissed off. She has always been a thrill junkie.
Thunderstorms are like scary movies for Schuyler. Even at 3 o'clock in the morning, once she's found her way to our bed, she's as happy as she can be as the lightning flashes and the thunder shakes the windows. She "wow"s at the lightening and the rain hitting the window so hard that it sounds like hail, and she squeals and giggles after the thunder. As sleepy as I am at that hour and as much as I know how zombiesque we'll all be the next morning, I still can't help but stay awake and watch her little face, illuminated by the steady flicker from the storm. I don't need words from her to see how happy she is when the storms rattle our world.
Middle of the night storms are like monster movies that appear out of nowhere, and I love them unconditionally, probably for the same reasons Schuyler does.
February 11, 2008
February 10, 2008
The surreal becomes real...
By the way, remember to join the Schuyler's Monster mailing list if you want up-to-date information on book stuff.
Update, 2-11-08 - Julie just called from her Barnes & Noble to say that the book actually arrived this morning, a week early. Can I hear a woot?
February 7, 2008
We may be comin' to your town...
A lot of people have been writing to ask about upcoming appearances, so here's what I've got so far.
(More details, including links to maps, are available on my Appearances page.)
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Book publishing party
Wed, Feb 20, 2008 -- 6:30 pm
New York, NY (RSVP required)
Fri, Feb 22, 2008 -- 7:30 pm
Barnes & Noble - Plano/Creekwalk Village
Plano, TX
Sat, Feb 23, 2008 -- 1:00 pm
Barnes & Noble - Prestonwood Center
Dallas, TX
Sat, Mar 1, 2008 -- 2:00 pm
Barnes & Noble - South Arlington
Arlington, TX
Sat, Mar 8, 2008 -- 2:00 pm
Barnes & Noble - Town & Country
Houston, TX
Sun, Mar 9, 2008 -- 2:00 pm
Barnes & Noble - Arboretum
Austin, TX
Tue, Mar 11, 2008 -- 7:00 pm
Barnes & Noble - Fiesta Trail
San Antonio, TX
2008 Assistive Technology Cluster Conference
(Keynote Speaker)
Tue, Jul 29, 2008 -- 9:00 am
Richardson, Texas
Southern Festival of Books
Sat, Oct 11, 2008
Nashville, TN
The 2008 ASHA Convention
American Speech-Language-Hearing Association
Nov 20-22, 2008
Chicago, IL
EDITED TO ADD: And possibly a conference in Detroit in July.
(More details, including links to maps, are available on my Appearances page.)
---
Book publishing party
Wed, Feb 20, 2008 -- 6:30 pm
New York, NY (RSVP required)
Fri, Feb 22, 2008 -- 7:30 pm
Barnes & Noble - Plano/Creekwalk Village
Plano, TX
Sat, Feb 23, 2008 -- 1:00 pm
Barnes & Noble - Prestonwood Center
Dallas, TX
Sat, Mar 1, 2008 -- 2:00 pm
Barnes & Noble - South Arlington
Arlington, TX
Sat, Mar 8, 2008 -- 2:00 pm
Barnes & Noble - Town & Country
Houston, TX
Sun, Mar 9, 2008 -- 2:00 pm
Barnes & Noble - Arboretum
Austin, TX
Tue, Mar 11, 2008 -- 7:00 pm
Barnes & Noble - Fiesta Trail
San Antonio, TX
2008 Assistive Technology Cluster Conference
(Keynote Speaker)
Tue, Jul 29, 2008 -- 9:00 am
Richardson, Texas
Southern Festival of Books
Sat, Oct 11, 2008
Nashville, TN
The 2008 ASHA Convention
American Speech-Language-Hearing Association
Nov 20-22, 2008
Chicago, IL
EDITED TO ADD: And possibly a conference in Detroit in July.
Coincidental booking
Holy crap, I just realized, and I mean just this moment, that I will be doing a book signing in Austin during the same weekend as the SXSW Festivals. I'm not sure what this will mean for me, other than I will probably end up sleeping in my car since all the hotels are probably already booked. Does it mean that absolutely no one will be at my signing because they'll all be at SXSW? Or does it mean that I'll have lots of people at my signing who wouldn't be there otherwise because they're in town for SXSW? No idea.
Well, if you're going to be in town anyway, I hope you'll come listen to me jabber and maybe talk to me afterwards. I'll also be in Austin for another day after that before my event in San Antonio two days later. Let's hang, yo.
Well, if you're going to be in town anyway, I hope you'll come listen to me jabber and maybe talk to me afterwards. I'll also be in Austin for another day after that before my event in San Antonio two days later. Let's hang, yo.
February 5, 2008
Pinwheeling
I did an interview for Jennifer Graf Groneberg over on her blog, Pinwheels, mostly about writing. Go check it out, yo.
Jennifer has her own book about parenting a special needs child, Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome, coming out in April and available for pre-order now.
Jennifer has her own book about parenting a special needs child, Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome, coming out in April and available for pre-order now.
February 1, 2008
Well, we were going to have this conversation eventually...
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.)
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.)
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.
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