Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
September 26, 2006
Best line: "A monkey posing as a newscaster..."
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
September 25, 2006
Happy birthday, dead guy.
There's not another artistic figure who has had as great an impact on my musical life as Shostakovich, but that's not the whole story. He is also a personal hero of mine, someone who lived in the most oppressive society in human history and managed to not only survive but also to create a body of work that expresses the reality of life in Stalinist Russia with an emotional honesty and clarity that would have been impossible in any other artistic genre.
When Schuyler was a baby, I promised her I'd take her to Russia in the summer of 2006 to celebrate this anniversary with her. Obviously, it ultimately turned out to be undoable. I would feel uncomfortable traveling in Russia with a non-verbal child, and I'd feel uncomfortable traveling anywhere in the world thanks to our non-sentient president. But I'll be listening to Shostakovich's music today, and reflecting on his life.
So there you go. Some artsy fartsy music jabber for you.
I didn't see THAT coming.
This was super cool since I was pretty sure the notice was there, but I hadn't actually seen it yet. It's always nice to be able to hold something like this in hand and be able to actually see the other articles so I can feel all legitimate and flip the pages until I get to the Deals section and see HOLY CRAP, THAT'S MY PHOTO.
Well. That'll wake you up in the morning.
September 20, 2006
Boring McWriterson
1) A comment was left on my last entry letting me know that there was a blurb about me (apparently generated by the Publishers Weekly article) in the Sunday Free Press in Winnipeg, a city that, for those of you who are a product of the American public schools like me, is in Canada. How cool is that? I'm NEWS, baby. Canadian news, no less.
2) In order to keep from cluttering up this fine fine blog with news and jabber about the book, I've created a book site over at SchuylersMonster.com. I keep reading how authors are expected to take up more and more of the promotional duties for their work, and I'm getting an early jump on it. I've been looking at different author sites, and I think this is pretty well in line with what's out there.
Just so you know, it's not all sassy and chaotic like this blog. I do not believe I shall be dropping the F-bomb over there with such Lebowskiesque abandon, for example. It's a professional endeavor, after all, with the single purpose of promoting the book. St. Martin's Press is taking a risk on a new writer like me, and I'm certainly going to do everything I can to make sure their investment pays off.
Am I a sell-out? Well, I don't know. It's my book, after all. It would be pretty stupid of me not to start doing everything I can to make it a success starting now. Besides, you know the reason I never sold out before? No one was buying.
Anyway, if you're interested in following the progress of the book, I'll be doing most of that talk over there. There's even a blog. I'm fancy!
September 13, 2006
Howl
It's hard for her, I know. She doesn't express frustration with her situation very often, but sometimes she just can't say what needs to be said, even when she goes to the BBoW, and that's when she gets angry at her monster.
When she got off the bus at school, her teacher said, she was in a bad mood already. Something was wrong, that much was clear, but she wasn't able to tell them exactly what. She was able to tell them that she didn't feel well, but she was struggling to tell them exactly why.
Finally, they figured out that she had a headache. They figured it out because she told the school nurse, in her own way.
She had the nurse put a band-aid on her head.
Well, there you go. Communication.
I've seen it so many times, I've watched her work her way around communications obstacles in different ways, sometimes imaginative and sometimes crude but always effective. It's a wonder to watch, fascinating to see how her brain works.
The last story in my book takes place a couple of months ago, when we were escaping the heat at one of those little play areas at the mall. Schuyler was confronted by a mean little girl who insisted on bullying her and the other kids by constantly occupying the same space that they were trying to play in. Julie and I very intentionally stayed back to let her figure it out by herself.
The mean girl had two sisters in on the fun with her, but she did most of the bullying, calling other kids names and pushing them around. Schuyler refused to budge, however. At first she tried to just ignore the mean girls, but that only enraged them.
Two things happened that convinced us that even if it wasn't how we'd choose for her confrontations to go down, we nevertheless could see that Schuyler was going to be okay.
The first thing was the worst, and happened before we could intervene. The mean girl hit Schuyler hard, on the shoulder. Before we could stand up and go over to them or even say a word, in no more time than it took for the windup, in fact, Schuyler quite simply hit the girl right in the middle of her face. And that was it. She dispensed what she saw as justice, and that was that.
The mean girl was so surprised that for a moment she didn't say anything. Then she started yelling in Schuyler's face.
"You can't talk! You're crazy! You're STUPID!"
Schuyler looked at her for just a moment, weighed her options (which were few, particularly without her BBoW), then leaned into the girl's face, her fists balled at her side, opened her mouth and howled like an animal. The girl was so shocked that she just walked away.
I'd like it to be different. I'd love for things to be any way other than this. But I suppose Schuyler doesn't have time for sentimentality or best practices or whatever. She's a sweet kid and the most loving human being I have ever known, in a world where frankly, love is almost always suspect.
But when she has to be, she's also the best pragmatist I know. Sometimes, all you get is a howl. I see that and I rage against the injustice. Schuyler sees it, and she howls, without hesitation. I'm proud of her for that.
-----
One quick note, while I'm jabbering away.
Because I am generally agreeable to being thought of as swell, I thought I'd share something an old friend of mine wrote about me. It's actually been a few years since I've spoken to Sari. She disappeared for a long time and so I assumed she'd joined some radical lesbian terrorist group. (I'm not sure whether I'm glad or sorry that she didn't.) She's one of those friends with whom the bonds are there and just waiting to be picked back up like no time at all has passed. I'm glad she's back.
Anyway, thank you, Sari. I like that she calls me "the last of the true gentlemen on earth". It almost makes up for that photo. Look how fat I was back then. Man.
September 12, 2006
Am I serious? No one knows, not even me.
The very first thing I plan to do when I get my advance for the book is buy Klops for Schuyler.
Well, come on. Go look at their other creations and tell me they aren't MADE for Schuyler. Look at Klong, and the Yeti. Her little mind might actually explode.
I just wrote to them to ask if they do commissions. I was thinking just one, for Schuyler, but who knows? I could have the industry's first special needs parenting book with a plush doll tie-in. The possibilities boggle the mind.
Schuyler's monster, indeed.
(Okay, back to work...)
September 11, 2006
Someone tell my mom, please.
"Schuyler's Monster"
Originally uploaded by Citizen Rob.
Well, okay. I guess I can go public now.
(from Publishers Weekly, 9/11/2006 - Deals)Blog to Book
Blogger Robert Rummel-Hudson's life was transformed when his daughter, Schuyler, was diagnosed with an extremely rare neurological disorder called Congenital Bilateral Perisylvian Syndrome (only several hundred cases have been identified worldwide). He began writing about his experiences in an online journal (belovedmonsterandme.blogspot.com) and will now publish his memoir, Schuyler's Monster, with St. Martin's Press; Sheila Curry Oakes acquired world rights from agent Sarah Jane Freymann. Schuyler, now seven, is nonverbal but communicates with the assistance of an electronic device. Rummel-Hudson will ruminate on the struggle with a child's disability while touching on larger issues of family, love and fatherhood. St. Martin's plans a winter 2008 publication.
September 4, 2006
Spelling for Monsters
Imagine learning your letters. Imagine having to learn the sounds that they make, sounds they make for everyone but you. Imagine then having to take those sounds, alien to you in any real, meaningful way, and put them together into words. THEN imagine having to take those words and deconstruct them in your head into the sounds that you can only hear and never make, and use the letters that you have learned to construct those words. Imagine having a teacher say a word to you, sounding it out, and you sitting in a class surrounded by other, neurotypical kids your age who can then put all these pieces together in such a way that it makes perfect sense to them, but will never be able to make sense in a tangible way to you.
Spelling has been challenging for Schuyler. We work with her on it every night, taking the list of words for that week's test and drilling it. We sound it out for her and she types it out, not on her device but on a computer keyboard, because that's what they use in her mainstream first grade class. It's hard for her to write; in addition to stealing her consonants and rendering her non-verbal, her monster fumbles her clumsy little hands, too. So she uses a computer keyboard, and I think that's fine. She's getting quick on her device, but she needs to be able to use the tools of the speaking world, too.
It's frustrating. She tries so hard, and when she can't grasp it because the sounds are hard for her to distinguish, it's easy to lose hope. This has been one of the few times that her condition has caused her real anxiety, and it's heartbreaking. She tries, and when she fails, she loses her focus. I have been telling her that she has to try harder than everyone else in her class. I don't tell her why, because how do you tell a six year-old that she's broken?
Besides, she already knows. She may not care very often, and she's certainly more positive about it than anyone around her, but she knows. Better than anyone, I suspect.
After a couple of weeks with dismal test scores, and after a week of hard drills with her that didn't seem to go anywhere but frustration, we were happily surprised to learn on Friday that she had scored seven out of ten correctly on her test, including the harder words.
I think she simply got tired of the frustration. In her head, I believe she said "Oh, screw this," knocked her monster out of the way and figured it out. It's too early to say whether or not she's really got this down or if she just had a good day, but I think it would be hard for her to "accidentally" spell words correctly. I'm hopeful.
Schuyler clearly has a learning disorder, that's a no shitter. Put a strip of duct tape over your own mouth and leave it there until the day you die, and see how well you grasp the mechanics of language. One unknown issue was always whether or not CBPS was going to take the same bite out of her that it does other CBPS kids.
Schuyler's monster has two ugly stepsisters that loom over our thoughts and fears: seizures and intellectual disability. Seizures we won't know about until (and if) they arrive. I think it is becoming clear, however, that although Schuyler may never be one of the world's great thinkers, she is not hugely mentally impaired. She's clever, she's determined, and most of all she's tenacious. She doesn't like to be told what to do, a trait that I encourage in her every chance I get, so she has to decide she wants to do something first. And then? She just fucking DOES it.
That's Schuyler's nature, and she comes by it honestly. I have no idea how smart she really is, not yet, but I also don't think it matters. I'm not all that smart, either, and I'm doing okay. She's going to do okay, too.
August 31, 2006
Potholes in Memory Lane
It's funny the things I was afraid of as a new parent. None of them came to pass, and yet the monster was there, already in place and fully formed. It would be July of 20001 before Schuyler's pediatrician would ask about Schuyler's speech for the first time, and another two years after that before we ever heard the words "Congenital Bilateral Perisylvian Syndrome".
In 2000, I thought our parenting future was just like everyone else's. I thought things were going to be okay.
Between now and the end of the year, I'm going to be revisiting the slow descent into the very worst of those days, all the uncertainty and the wondering if Schuyler was deaf and hearing the idiotic term "Pervasive Developmental Disorder - Not Otherwise Specified" for the first time. I'll get to hit rock bottom in the summer of 2003 when we finally met the monster, and a few weeks later, I'll get to plummet back down to a year and a half later when we went to Chicago to look for hope and instead found out that as bad as we thought it was, Schuyler's monster was even uglier than we'd been told.
If I progress on schedule, sometime in November I'll be back in Austin circa spring of 2004 learning about the Big Box of Words and fundraising for Schuyler's shot at having a voice. December will bring the fight, and the hope, and by the end of the year, I should be done.
Where Schuyler is concerned, I sometimes get so caught up in trying to prepare for the future that I sometimes forget that the past was no picnic, either. If I could go back in time and talk to the me of 2000, I'm not exactly sure what I'd tell him.
"Brace yourself, man."
August 28, 2006
I know smart people.
And then there are the ones for whom there is no doubt whatsoever why they are meeting with success.
Congratulations, Campbell Award-winner John Scalzi! Keep on keepin' on.
August 26, 2006
Monkey Paw
Just so you know. She really is my pretty ninja. She'll mess you up, bitches.
As you can imagine, it's been a crazy week. I never really thought the whole hypothetical experience through, what it would be like to get a book deal. I guess if I imagined it at all, my fantasy scene would have been similar to winning the Publisher's Clearing House Sweepstakes, like I'd get a knock on the door and guys in suits and giant toothy smiles would say, "Robert Rummel-Hudson! We're buying your book! Sign here and you can have this big fancy check and a spot on Jon Stewart and all the hot undergrad English majors you can handle!"
The reality is that after a week of emails and phone calls and questions about deadlines and percentages and marketing and publishing terms that I had to look up online (before answering the same thing every time: "Sounds great!"), the process is still, well, in process. (Yeah, that was an eloquent turn of phrase from the fancy pants writer.) I suspect the next few days will bring some closure, and with it perhaps the giant check and the hot young chickies.
And then I have to finish this thing. I have until the end of January to turn in a finished manuscript, and I've mapped out the amount of time I need to complete it before the end of the year, giving me a few weeks to pretty up the mess when I'm done. It works out to about a chapter a week. As a fun little online component of the process, I'll list the name of the chapter I'm currently working on over in the sidebar. If you don't see it change once a week or so, you have my permission to send me an email that says "What the fuck, Chuck?"
Through it all, life continues. Schuyler continues.
I have to admit, this has been a slightly bittersweet experience. For as long as I can remember, I've wanted to be a published writer. It's been a consistent dream of mine, but now that it's coming true, it feels a little bit like a monkey paw story. (For those of you with a clicking allergy, the reference is to a 1902 story by W. W. Jacobs, in which a dead monkey paw grants wishes but with an ugly price.) I've been in such a celebratory mood all week, but when I sit down to work on the book, the reality of this story blows through my mood like smoke.
I'm thrilled that this book is going to be published. Well, of course I am. Part of that thrill is the weird rush of a life's dream coming to pass, like the first drop of a roller coaster. Part of it feels like a small measure of justice for Schuyler, as if God can do this to her and I'm powerless to stop him, but at the very least I'm going to let the world know what a bully he is. And part of it has the whiff of evangelism, bringing her story to people who might have some kind of monster in their own lives. Schuyler's an inspiring kid, she never loses her spirit even when we do. And make no mistake, we do, a lot.
In the end, as much as I'd like to play the part of Talented Author Type, the reality is that this book is getting published because of Schuyler. She's writing her own story, she's going to make her own way and knock down whomever she has to in order to do so.
Me? I'm just writing it down.
August 25, 2006
Technical Note
On the other hand, rob@darn-tootin.com and rhudsonphoto@gmail.com work splendidly.
Okay, back to what you were doing. More from me soon, after this adrenaline-fueled frenzy of book prep runs its course...
August 23, 2006
Announcement
Look for Schuyler's Monster with a target publication of Spring 2008 (with an eye towards Father's Day), most likely in hardcover, possibly with photographs.
And uh, that's it, actually. I've been getting schooled all day on the finer points of publishing contract speak, having to make decisions on things like First Serial Rights (for things like publishing excerpts in magazines, etc.), World Rights, and lord help us all, the audio edition. (Personally, I think James Earl Jones would sound very distinguished saying the word "assmonkey".)
I'll obviously be rattling on about this more as things become settled, but there it is. A lot of things I'd been planning, such as the podcast, might be on hold for a bit until I get this thing finished (with a likely deadline of the end of January), but I'll no doubt have lots to share here during the process, for those who are interested.
Now if you'll excuse me, I have a "So, how do you like me NOW?" email to compose for ex-girlfriends, my high school guidance counselor, and at least one former employer.
That was a joke, by the way.
August 21, 2006
Waiting is a special hell.
Waiting.
I keep looking at the phone, trying to coax a ring out of it. Nothing. Maybe if I wiggle my eyebrows. No? How about if I bug my eyes out? Nothing? I could try a Samuel Jackson on it.
"I want this motherfucking phone to motherfucking RING!"
No? Too last week?
Maybe it's not working. What if my phone is broken and they try to call?
"Wow, his phone doesn't work. How rude! Screw this guy."
What if I pick it up to check, and that's the moment they call? What if they get my voice mail and say, "Wow, he's busy. He's not going to have the time to devote to us. Let's call Dan Brown and see if he's got lunch plans."
Okay, I checked. Dial tone.
I wonder if they tried to call just now when I did that?
Yeah. I'm a little nervous.
August 18, 2006
So far, this weekend's looking a hell of a lot better than last weekend.
I have big news, but I can't tell you what it is. Not just yet.
Call me superstitious. When everything's signed and legally binding, you'll be the first to know.
(Like you can't figure it out on your own.)
August 16, 2006
"Space Boy, Fly Girl, living in the Underworld..."
I wish I were making that up.
So when we went to the big First Grade Parent/Teacher End-All Hootenanny of Hootenannies, Julie paid attention and actually learned some stuff while Schuyler and I mocked the principal's presentation by making the little "blah blah blah" talking hands at each other. (Imagine David Byrne in his big suit in the "Once in a Lifetime" video; "You may ask yourself...")
So yeah, we were a bad little scene, but I'm not sure what to tell you. Schuyler and I are the same in so many of our personality quirks, and our impatience with time wasting is one of them. I can't speak for Mister "Stupid Hot Day Question" Dad, but I don't actually require, when handed a handbook for parents, to then have all the teachers take turns showing it, page by page, in a PowerPoint presentation while READING it aloud to me. I thought we did pretty well, considering I'll one day be lying in bed, old-man-stinky and dying, and one of the last things I'll wheeze out in a raspy voice will be, "Goddamn it, I wish I had that hour back right now..."
I think Schuyler's going to fare pretty well this year. As always, she wasn't the slightest bit apprehensive about going back to school. Schuyler feeds on the new, and she loves meeting new people. Some kids don't handle change very well, but Schuyler is almost the opposite, like me. She gets bored with routine, and when she senses me getting bored, too, well, it's time to break out the David Byrne hands. The nice part is that when the other parents stare at her, which a surprising number of them were doing, the chances are at least even that it's not just her enthusiastic but non-sensical Schuylerese they are reacting to. It could be her pink punkass hair or her father-induced squirrelly behavior. Not everyone knows what to do with a beautiful freak.
Finally, after sitting through the meeting for about seven hours (internal measurement; one actual hour), we left the school and went our separate ways, Julie to go to the store and Schuyler and I to go home. In the car, Schuyler and I sung and danced around to our current favorite "Father/daughter funk track", which coincidentally, is a song by David Byrne, "U.B. Jesus". If you're not a David Byrne fan, I don't know what to tell you. You might just be dead to me now.
We always save our most enthusiastic jumping around (and get the most stares from the No-longer-quite-so-young Republicans and MILF-wannabes in the cars around us) for the part where the song kicks into overdrive.
Jump Back, Jump Back
Givin' me a heart attack
Fall down, Fall down
Sweeter than a cherry bomb
Sweet Thing, Sweet Thing
Steppin' on your violin
Space Boy, Fly Girl
Living in the underworld
When I sang that last part to her, she clapped and laughed her little head off.
"Who's Space Boy?" I asked her. She pointed at me.
"And who's Fly Girl?" She pointed to herself in triumph and started dancing some more.
So there you go. Same as it ever was.
August 10, 2006
Queen of Butterflies
Such as this very cool art created for Schuyler by my friend Beth at DarnLucky.com. She was inspired by my recent entry about taking Schuyler to Mexico to see the butterfly sanctuaries (a trip that I am now more determined than ever to take her on one day).
I already ordered a print of it and am going to have it framed when it gets here. Then I am going to give it to Schuyler and watch her tiny head explode with joy.
Celebrating Schuyler is something I will never do half-heartedly. She is the reason I do anything in this world, she is the person who never disappoints me and never looks at me with disdain or anything less than total love. At the end of my days, she's the one who'll be standing beside me, and when I am gone, she's the one who'll remember that I was here and that I loved, too much and imperfectly sometimes, but never with anything less than my whole heart.
Anyway, thank you, Beth. Very very cool.
I feel like the oldest old man in Old Man Town.
My first thought was, "That's weird. When did they start accepting babies into the first grade?"
So yeah, I'm clearly in denial.
It was a strange day for Schuyler. This was her first day in the new school uniform, which looks sharp on her if I do say so myself, and I do. It was also mostly an orientation day, and not the only one. Her box class wont actually begin until next week, so she's spending these first few days as a mainstream student. I'm both nervous and curious to see how that works out.
A boring story, I know, but it has a dramatic conclusion. The bus that was supposed to bring her home after school was running late, so Julie called me to tell me and then called the transportation office.
And that's how she discovered that Schuyler had been dropped off at THE WROOOONG FUH-KING LOCAAAATION.
The drama was short-lived. Julie quickly discovered that Schuyler had been taken to the YMCA (her after school provider last year) by mistake, thanks (I think, although it's not clear at this point) to her school using a list from last year. Schuyler got intercepted by some staff who remembered her, and she was wearing her gimp tag, so it wasn't like she was standing at the side of the road somewhere, silently thumbing a ride.
Still, she was at a location where no one was legally responsible for her safety and where, since she wasn't on the YMCA's list, she could theoretically have been taken away by child molesters or cannibals or the Jane Book Club and no one would have necessarily stopped them. So it was a big deal. Julie and I were still twitchy hours later.
Perhaps not coincidentally, I think I have two spots at my temples that appear to be going grey. I noticed them this morning.
August 8, 2006
Wings
-----
"We are like butterflies who flutter for a day and think it's forever." -- Carl Sagan
If you are an old friend of mine, you've heard about this before, so sorry. But it occurred to me recently that I don't think I've written about this in any recent version of my online jabber. It's an important Rob Fact.
About twenty years ago, I was sitting around watching television sort of aimlessly (some behaviors are eternal, I suppose) when a program came on about Monarch butterflies. By the time it was over, something had changed in me.
It told how every fourth or fifth generation or so, Monarchs cross North America by the millions, flying south from as far north as Canada at a rate of about 80 miles a day, braving birds and weather and the destructive human stain on the world, until they reach a cool mountain pass in the volcanic highlands of Mexico. Scientists have no idea how they manage it. The butterflies that actually make the journey have never done it before; they are the great, great grandchildren of the previous travellers.
When they get there, the Monarchs congregate in groups so huge that the branches of the trees bend and touch the ground from the weight of them. They meet and they have sex and lay their eggs, and then they die. Their children fly north and start the whole thing over again.
I knew then, even as a stupid teenager, that I wanted to go to Mexicao and experience it one day. For twenty years, it has remained the only dream of mine that has never wavered.
It's funny how many times I've shared this dream, with wives and ex-wives and lovers and friends. And despite the fact that a number of people over the years have expressed an interest in going with me, I think I always felt deep down that when I do eventually go, it would be one of two ways.
Alone, or carried by someone who loves me, in an urn.
I have no idea how it'll happen. I'm in better shape than I've been since high school; I'm actually closing in on weighing the same as I did when I first learned about the Monarchs. I'm healthier now than ever in some ways, and sicker than ever in others. It's a weird sensation, being thinner and fitter and yet waking up some days feeling old and worn down.
But if I stay healthy enough for a bit longer, there may come a day when I limp into the cool shade of a quiet Mexican mountain pass and hear the unimaginable sound of millions of tiny flapping wings. And if I'm lucky, I'll have company, perhaps the company I was destined to have all along and never even knew it. She won't be much of a conversationalist, but she'll sign "butterfly" because she loves them, too. She'll share the experience that I've dreamed of since I was young and the future stretched in front of me, a future full of promise and still empty of monsters.
If not, I hope that one day she'll go there for me, my ashes in her backpack next to her Big Box of Words, and be the last person to say goodbye to me.
August 6, 2006
Beautiful freak
Hiding from the sun.
Originally uploaded by Citizen Rob.
You're such a beautiful freak
I wish there were more just like you
Youre not like all of the others
And that is why I love you
Beautiful freak, beautiful freak
That is why I love you
Beautiful freak, beautiful freak
Some people think you have a problem
But that problem lies only with them
Just cause you are not like the others
But that is why I love you
Beautiful freak, beautiful freak
Yeah that is why I love you
Beautiful freak, beautiful freak
Too good for this world
But I hope you will stay
And Ill be here to see that you dont fade away
Youre such a beautiful freak
I bet you are flying inside
Dart down and then go for cover
And know that I
I love you
Beautiful freak,
You know that I
I love you
Beautiful freak, beautiful freak
-- Eels, "Beautiful Freak"