Monster Gallery

Schuyler had a pretty good day.

She woke up in a good mood and insisted on taking photos of her bus when it pulled up. She took pictures of me, too, as I took pictures of her, and the ridiculousness of it made her laugh. When she climbed aboard the bus, she waved excitedly and blew her kisses to me, unaware of the tiny piece of me that died like it does every time her bus pulls away.

We met with two of her teachers today, the miracle worker who runs her box class and the mainstream first grade teacher who loves our daughter even though I think she's a little frightened by Schuyler's independent streak. She told us today, in the midst of reporting Schuyler's progress, that occasionally "she talks too much in class". Julie actually laughed out loud.

The general feeling of her teachers seemed to be that Schuyler is doing very well in some areas, lags behind in some others (she apparently has inherited a gene from me, the one that both hates and fears math), and can either reach for academic greatness or pull amusing but ultimately useless stunts, depending entirely on her mood.

(These include correctly writing, in her careful, jagged handwriting, the numbers up to 29 before getting off track for a few lines and then simply drawing little squiggles in every box, right up to the last one, where she wrote "100". Or the science question, in which she answered the question "What is the natural resource that covers over 70% of the earth's surface and is required by all living things?", not with the obvious junk science answer, "water", but rather that more controversial scientific theory, "ballet class".)

For the most part, however, she appears to balance that occasional lapse with genuine, true school-nerd enthusiasm. She raises her hand in class, whether or not she knows the answer or has even heard the question yet. Sure, I suppose she could simply be turning into a little kissass, but I think the truth is that she's happy to have a voice of sorts and is desperate to participate in the world around her. She's become excited about her Big Box of Words again, thanks to her ongoing transition to the higher level, and she's starting to show her classmates how to use it on the 84-key setting. Her teachers say she's doing well in school, despite her monster, and she'll be moving on to second grade next fall.

I worry about Schuyler, about the uphill struggle she faces in trying to keep up with the rest of the kids in spite of the huge disadvantage that she has with the BBoW. And let's be clear; it is a remarkable tool for her, it has given her a way to communicate that has changed her life and unlocked a lot of doors for her, but it is also a maddeningly slow way to speak, and that is going to make it very hard for her to function in class. There are time benchmarks that she is supposed to be able to meet according to state guidelines, and they don't lend themselves to augmentative communication. But there are adults who do it, and Schuyler will, too.

I also worry about her social development, particularly how she'll be accepted by her peers. But school seems to be a haven for her in that regard; the neurotypical kids love her and argue over who is going to help her in class. She may still be the equivalent to E.T. to most of them, but we'll take it for now. Perhaps my expectations about mean kids will be proven wrong; they have been so far, I must admit. Grown-ups are often another story, but she doesn't appear to care too much for adult acceptance. We're the dinosaurs. Mean, old and doomed to extinction.

We saw her briefly when we went to the classroom to get some paperwork taken care of, and she was neither embarrassed nor clingy. She said her loud hellos, gave her big, Sumo-style hugs and then went back to her social circle, bragging about how her dad (the Hero of Inappropriate Movie Choices) took her to see Spider-man over the weekend.

When she got out of school, we gave Schuyler a surprise, a hand-crafted little monster that was made for her by an artistic reader. She loved it, playing with it and talking to it all the way home. She kept asking us for its name, and Julie suggested "Paisley", for obvious reasons. Schuyler liked that name, so Monster Paisley was born.

When we got home, I wanted to take a photo of it to put on the book site, and Schuyler eagerly helped. I had her gather the monsters that she'd been given as gifts over the past year or two, and as I took their photo, she kept bringing in even more monsters (along with Jasper, who gets to do whatever he wants, thanks to his role as Unofficial Big Brother).

Schuyler wanted a monster family portrait.

I've taken a lot of portraits, but this one was my favorite so far.

So it goes.

Bookedy book book stuff

I've been posting so rarely on my book blog lately that it's probably worth mentioning when there's a new entry over there.

So yeah. There's a new entry over there.

This has been the slow time for book stuff, and really, I'm still nine months away from publication, so that's probably as it should be. I've been writing online for so long, since 1995 if you can believe it, and the worst delays I usually have to deal with involve not having internet access at the precise moment that I want to upload some pearls of wisdom.

(Tonight would be a good example. Massive, nasty Texas storms rolled through last night and knocked out our power for about eight hours. It was cool while the storms were actually moving through; we just sat on the bed and watched the show, waiting for cows and trailer homes to start flying by so we'd know when it was time to hide in the bathtub. Now, it's just boring. Also, it's uncool when the lights and television suddenly come back on at 3am. I think I peed myself.)

So I've been spoiled by the instant gratification of the internet. Adjusting to the glacial pace of the publishing world is probably good for my impatient soul. Having said that, I found out today that I'll be getting my first round of edits back soon, and that's when the real work begins. You know, aside from that whole "writing the book" part.

Don't quote me

(Originally posted at SCHUYLER'S MONSTER.)



Okay, so let's say you're working on your book, and there's a favorite song of yours, or a novel by your favorite writer, or some other bit of work that you find both inspirational and relevant in the context of what you're writing. You say to yourself, "Gosh, Self, I think that would make a swell addition to my book!"

I'd like to suggest that you resist the urge. Unless you find you really need those quotes, you might be opening yourself up to a world of frustration.

When I wrote SCHUYLER'S MONSTER, I included a number of quotes, mostly from songs that I liked and have sung to Schuyler over the years. In a few cases, the songs themselves played a part in the story. Including them made sense to me.

Move forward a few months, to about ten minutes ago. I just finished going over my manuscript and removing every single one of those quotes.

I did it for two reasons. The first, and most obvious, is that it is quite simply a gigantic pain in the ass to get permission to use quoted material. I sent out four permission requests (using a form written in Martian Legalese provided by St. Martin's Press), three in order to secure permission to use song lyrics and one for a line of poetry. Of the four, two were ignored outright, at least so far. One artist's manager corresponded with me via email and, after I made a change requested by her legal department AFTER bouncing it off of St. Martin's legal department, agreed to give me the permission but then never actually returned the form.

And then there was the poetry quote. Fifteen words, not even a complete sentence. I sent the form, along with a letter and a business card, to the person in charge of permissions at the big house that published the poet. (I won't say which publisher, except that every time I see their name, I think of The Office.) A few weeks later, he returned it all, even my business card. (In the words of one of my fictional idols, High Fidelity's Rob Gordon, "That is some cold shit.") The reason? He needed more information, things like the publication date, number of pages, territory, print run, and price. At the time, my book was ten months away from publication; I didn't have answers to most of those questions.

My editor was kind enough to provide the answers for me (which was actually pretty cool to find out; you'll laugh, you'll cry, you'll kiss $24.95 goodbye), so I resubmitted the form. (No business card this time, though. Get your own, buddy.) Today I finally got permission. Except of course, they listed my publisher as "Self-published", so I have no idea if it's even valid.

I give up. Keep your fifteen words. It's like trying to negotiate with the Gollum. "My precious!"

I said there were two reasons for losing the quotes. The general pain-in-the-assedness is a good one, to be sure, but perhaps a better one is simply this. If I have faith in my writing (and if a house like St. Martin's is willing to believe and invest in my work then I'd better believe in it, too), then I need to re-evaluate why exactly I feel it necessary to use other people's words to back up my own. I see the value of a quote for color, but when I really looked at the number of quotations I was using (one or two at the beginning, one for each of the three parts, and some material within the text as well), I realized that it was too much. At that point, I'm relying on someone else's words to express what I should be saying myself.

It feels like a rookie mistake, and I'm glad I got it out of my system this early in the process.

I should be getting my first edits back soon. I can't imagine I won't have something to say then. Things are about to start happening in a hurry. I look forward to it with enthusiasm and perhaps just a sprinkling of nausea. You know, the good kind of nausea.

Screw Holland, revisited

Perfect score
Originally uploaded by Citizen Rob.

This is Schuyler.

She is holding this week's spelling test. The words printed on the page are hers, from her device as she took the quiz.

Aside from a soccer ball sticker and a "Toadally Awesome!" stamp, it has no other markings on it.

That's because once again, she received a perfect score.

This is Schuyler. Two years ago, we were told that she was not intellectually capable of using this AAC device, the Big Box of Words; it was deemed, in the school district's final report before she actually acquired the device, to be "educationally unnecessary".

This is Schuyler. Two years ago, and also another two years before that, we were told that her future lay in general special education classes. We were informed that she was most likely suffering from some level of mental retardation and would likely remain in the care of special education until the day she was old enough to become Our Problem rather than Their Problem.

This is Schuyler. She is learning to use the BBoW on its highest setting, its most advanced vocabulary. She's already better at it than we are. She likes to show off on it and is already embracing the new vocabulary possibilities. Also, it has more dinosaurs.

There's a word that is forbidden in this home. It's a word that sounds very kind and nurturing, like something you might hear on Sesame Street, a word that spawned the Holland thing. We've been handed this word over and over again, and we reject it, completely. The word is a cage, plain and simple, and it's a cage we'd be putting Schuyler into if we embraced it.

ACCEPTANCE.

We don't accept a thing, because Schuyler doesn't. She never wants comfort or pity or acceptance. She has things to say, and she wants to say them. She wants to live a life as close as she can to the ones you and I live, not as a "special little champ" or "perfect just the way she is" or whatfucking ever, but as a punky, funny, smart and troublemaking little girl. She is Chaos in Chuck Taylors. And if you get in her way, she'll knock you over, because she's lost enough time and she knows it. She's flawed, more than some but not so much as others, and she knows that, too, and she doesn't shed a tear about it. While I worry and get sad, she rolls up her sleeves and gets to work.

Acceptance wouldn't be for her. It would be for us, for our fears of failure. I can't speak for any other parents out there, of children who are broken or exceptional or shy or hyperactive or just plain weird or whatever. But for myself, I was blessed from the very beginning because while I had a great deal of fear, Schuyler had none. She has none today.

And she has no use for Holland, either.

"There you could look at a thing monstrous and free..."

Originally uploaded by Citizen Rob.

In a moment of seemingly random generosity, two different readers sent Schuyler items off her Amazon list, and all but one of the items were related to her love of monsters.

One of them blew her mind. I wish I'd had a camera ready when I walked into the living room with a purple dragon puppet (with unseen controls) on my shoulder. I wish you could see her expression when she said hello to it and it answered her.

I had a rough week. I needed that.

For the first time, Schuyler is going to write her own thank you notes.

And life goes on. Perfect moments on a spectacularly imperfect canvas.

I know it's easy to think that because things are going well for Schuyler and for me professionally, there would be nothing but happy times. I can't imagine for a moment why that isn't the case. The world is supposed to make sense, it's supposed to be ruled by logic and a sequence of events and behaviors that are connected and rational, and yet it so rarely works out that way.

When things get confusing like they are now, I run to the only person in the world who has never disappointed me and who never sees me as weak or stupid or ugly. Or broken.

Schuyler and I are broken, but we never see each other that way. We play with toy monsters and leave the real ones outside the door for just a little while. I suppose everyone's broken, really. And like that line in Schuyler's favorite movie, the thing we come to learn about ourselves is our undying ability to destroy the things we love.

One day, Schuyler and I will damage each other, too. But for now, I'm taking her to the zoo. The hurt and the chaos of this grand rough world will just have to fucking wait.

Return of the fancy

Originally uploaded by Citizen Rob.

Tomorrow, I'm going to spend the day in Austin pretending to be a fancy pants author, visiting some book stores to promote my fancy pantsedness. I can't tell you how nice it'll be to get out of Dallas, even just for the day. My pants, they have not been feeling so fancy lately.

If you are a fancy pants media person in Austin and are thinking of attending the very first ever fancy pants mediabistro.com All-Media Party in Austin, I hope to see you there.

Remember, wear your fancy pants. (Well, dress for the party is casual, so your pants need only be fancy in your BRAIN...)

Dispatches from inside monster-occupied territory

"Love mommy and daddy"
Originally uploaded by Citizen Rob.

One of the things we'd sort of come to accept about Schuyler's condition was that the effects of polymicrogyria on her fine motor skills meant that handwriting for her was always going to be difficult, if not impossible. For a long time, her writing was awkward to the point of being unreadable, which was less of a problem once she started to do well on the Big Box of Words. It was generally accepted that Schuyler will almost certainly never be able to speak and probably not be able to write, either, but with the BBBoW, that was fine. It was one more aspect of PMG that she might not be able to knock down, but with the right tools, she could just walk around it instead.

One of Schuyler's defining characteristics, however, is her stubborn refusal to give up on something. That's not going to be a surprise to anyone who's been reading about her for even just a little while. When something defeats her, you can see it in her eyes, beneath her cheerful shrug of acceptance. Outwardly, she seems to say "Okay, whatever, no big deal." Watch carefully, however, and you'll see that last lingering glance. "I'll be back to kick your ass later." And she always does.

In the past month or two, her handwriting has suddenly improved dramatically. She loves to spell, and she loves to write. (As an author, you have no idea how happy that makes me, even if she ends up writing a book one day saying how full of crap I was.) When she woke me up this morning, the first thing she did was start writing notes. The first was this one, "Love mommy and daddy". The second was a note demanding cereal for breakfast.

It's clumsy, sure, and when she runs out of space, she continues mid-word on the next line. But damn it, she's writing, and we can read it, and that's just one more thing we were told she'd probably never do.

It may not look like much to you, but to us, it's like professional calligraphy.

Tiny paleontology

TV buddy
Originally uploaded by Citizen Rob.

Schuyler has more to tell you this morning...

-----

My dinosaur is orange and yellow and green. She has red eyes. She roars and eats little dinosaurs. She has friends. I love dinosaur. Her name is Lana. My Dragon is name Zoe. My dinosaur is a tyrannosaurus rex! Good-bye to daddies friends!

-----

(Just so you know, we looked on this stupid thing for five minutes, trying to find how to do an apostophe s before she gave up and just went with the plural. The BBoW knows how to keep its secrets. On the other hand, she knew exactly where to find "tyrannosaurus rex". Go figure.)

Another Inconvenient Truth

Before the fluttering of TV-ready flags and the patriotic, outraged sputtering gets too loud for anyone to think clearly, let's hear it once straight up.

"I believe myself that the secretary of state, secretary of defense and -- you have to make your own decisions as to what the president knows -- (know) this war is lost and the surge is not accomplishing anything as indicated by the extreme violence in Iraq yesterday."

-- Senate Majority Leader Harry Reid, April 19, 2007

The thumping has already begun, the wailing of "They don't support the troooooops!", and if past experience is any indication, the Democrats will soon be issuing "clarifications" about what the senator really meant and trying to water down what was actually a much-needed stiff drink.

So before Senator Reid ascends the wobbly tower of public relations Jell-o, let me throw in my own opinion.

He's right. The war is lost.

It was lost long ago. Maybe from the very first day.

It wasn't lost by the troops. It was lost very much in spite of the troops.

It was lost by old men in Washington, D.C.

If they can resist the indignant cries from that small but loud percentage of the extreme right who would unconditionally support the president even if he shot up a college campus or ate a puppy on television, the Democrats might just turn back into a party with some measure of leadership.

They just need to know one thing most of all. Here's that thing, the one they might not completely know because no one on either side of the aisle seems to be able to hear the voice of the People (with a big P) very clearly,

We already know the war is lost.

We may be stupid, easily distracted, American Idol-watching children, but we know the war is lost. Speak what's true, and we'll listen, we'll listen because we already know it, even if we're not all ready to say it. We need leaders to say it and to actually lead us out of the dark.

I've had my heart broken in the past by Democrats who stood up and spoke hard truths, only to weasel and wiggle back across the line when the heat got turned up. But even knowing how it usually turns out, I do still so love that brief moment when the party of my idealistic youth stands up like an aging bull ready to take one last futile stab at the matador, forgetting for just that moment of clarity to fear the butcher's block and the Hamburger Helper yet to come.

Support the troops with more than a ribbon magnet on your SUV. Get our people out of there.

Large things made small

Originally uploaded by Citizen Rob.

You know, when there's a huge new event in the world, I always have to pause and see if I have anything to say about it here. After yesterday's events in Virginia, I didn't think I did. It was obviously as upsetting to me as it was to the rest of the country and the world, but that didn't mean I had anything particularly unique to say about it. I didn't think I had a personal reaction to offer about the effect of such large, remote events on my own small world or that of my family.

But then, I didn't expect to feel such a heavy sense of unease, such a stone in the pit of my stomach, as Schuyler got on her school bus this morning. I never felt such an urge to go outside and wave the bus away like I did today.

What a world we live in. So it goes.

Update: I just watched a CNN reporter completely lose his composure while he described the local emergency officials removing the bodies from Norris Hall as the dead students' cell phones were ringing and buzzing, their frantic parents tried to make sure that they were okay. I don't even know what to do with that image.

This could be the start of something interesting...

Happy dragon girl
Originally uploaded by Citizen Rob.

Okay, so the thing we discovered in our Box Class a few days ago? The one that I said I was just going to spring on you? Well, we learned how to interface directly between the BBoW and our laptops. This means that Schuyler can now send emails, input into Word documents and, well, blog. Good thing, too, since she wants to tell you about her new friend...)

-----

my Dragon eats elephants . My Dragon is green . I love Dragon . she can fly! She is my friend.

-----

(Note: Yep, it's apparently a chickie dragon. Well, of course it is.)

Elephants beware

This summary is not available. Please click here to view the post.

"Everything was beautiful, and nothing hurt."

Kurt Vonnegut
1922-2007

Love your pets

So I got a surprise comment left on a previous entry, Things to do in Plano, from none other than the brother of the monkey guy himself.

Believe me, you've missed most of the story on this one. For the whole truth, and to see why you've all been suckered into taking part in character assassination of a really nice man, go check out www.savedarwin.com.

In the interest of fairness, you can go check out the rest of the story. I will say that as I read what's on the site, I honestly think there are a lot of holes in the story, but you can judge for yourself.

(Perhaps this might be a good time to read up on why having a pet monkey is a phenomenally bad idea. I haven't read the whole site, so I don't know if it addresses something I've always heard, that little tiny boy monkeys will jump up on your shoulder and have sex with your ear. Maybe that's best left a mystery.)

So here you go. Let it never be said that I don't provide both sides of the story. Or that I'm not here to meet all your scandalous monkey love needs. You're welcome.

Fragile Innocence

Julie ran across a passage in a book she's reading, James Reston, Jr.'s Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey .

Reston writes about his daughter, Hillary, who was stricken at the age of eighteen months with a high fever that left her significantly (and mysteriously) impaired. His descriptions of the onset of her seizures is enough to keep us up at night. But it was this observation that resonated with Julie, and with me, enough to share with you.

When we moved to Washington that summer, the coldness and embarrassment of strangers were evident. With Hillary's yips and her strange gait and her impulsive gestures and her hovering parents, it was clear to any passerby that something was wrong with her. Strangers turned away or looked at her curiously as if she were an exotic creature from Mars or the circus. As we met new people, their reaction to Hillary, whether inviting or embarrassed, became a litmus test of whether we chose to pursue the relationship. In our minds we knew this to be unfair, and later we came to realize, in our denseness, that good and well-intentioned people often simply did not know how to react. But we could not help it. It meant that our circle of friends shrank to a precious few.

We haven't finished the book yet, but so far, it has given us a sobering and gripping look at a family dealing with another child's monster, one that is much bigger and more sinister but vaguely familiar all the same.

Reminder

I should probably post something like this every now and then, especially as we get closer to the book release.

Coffee Talk

Holding court
Originally uploaded by Citizen Rob.

Sometimes we do things for Schuyler that help her along in the world. We make decisions and sacrifices that turn out to be the right ones and which propel her down smooth, bright roads.

Sometimes she does it herself. Most of the time, she pushes herself down those roads.

The other day, we took Schuyler to a local mall so she could run around and play without being subjected to (or subjecting us to) fried "foods", cheap Happy Meal toys or demented clowns. At this particular semi-fancy mall, there is a huge play area that Schuyler loves. It is one of those new trendy playgrounds made of squishy giant forms that the kids can climb around on and fall off of without incurring litigation.

In the case of this particular play area, the theme was "giant breakfast". A twenty-foot plate held a steak the size of a queen-sized mattress and two wagon wheel-sized eggs. A slice of grapefruit was topped by a cherry the size of a basketball. It is a very very cool playground.

Schuyler was having her usual great time on the Big Breakfast; I think it's probably her favorite place to play, with the possible exception of the previously mentioned and oft-requested Clown House. As she tends to do, it wasn't long before she'd made some friends. In this case, it was two sisters who wanted to run around the giant plate, alternately chasing and being chased by Schuyler, and their brother, who kept us as best as he could despite a cast on one leg.

After exhausting themselves, the four of them climbed into the giant, jacuzzi-sized cup of coffee and began the whole "So who are you and what's your scene?" discussion. Before it got very far, Schuyler ran over to us and grabbed her Big Box of Words.

What happened next stopped us in our tracks. And by us, I don't mean just Julie and I, but rather every parent in the area. We all sat, silently mesmerized, as Schuyler began demonstrating her device and asking questions of all the kids present. The four turned to six, and then eight little kids crowded around the giant cup, fascinated by this hard-playing, hard-laughing little girl with the robot voice. All the adults watched in wonder as a crowd formed around one little girl. I think they worried about the Revolution of the Small beginning at that moment.

At the center of it all was Schuyler. She asked everyone their names and how old they were, and she answered their questions as best as she could. She led a cyborgian rendition of "Old Macdonald Had a Farm". And when one little girl repeatedly tried to reach over and take the BBoW, Schuyler told her "No." and sternly pointed at the ground outside the cup until the little girl glumly climbed out and skulked away.

Banished by the Cyborg Princess. It's a harsh world in Schuyler's Coffee Cup.

For a full twenty minutes, Schuyler held court, and kids came and went from her audience, aside from the siblings she'd befriended, who never left or took their eyes of off of her. It was only after the kids' mother came up nervously and started checking them out that I approached them. I could see at a glance, as is often the case, that while the kids were all fascinated by and even envious of Schuyler and the BBoW, their mom was a little freaked out.

That's how it usually happens. Almost every time, actually. If someone gets spooked by Schuyler or her monster, it's almost always another adult, as if their kid might catch whatever she has. Kids her age tend to absorb what's different, make their quick adjustments in order to facilitate play, and them go on. Can't talk? Well then, let's run around and howl instead.

When I came over to check on her, Schuyler looked up at me and smiled. I could tell she was as happy at that moment as she's ever been. Then she turned to her new friends, lifted the BBoW over her head without looking at me until I dutifully took it from her, and then she leapt out of the cup and ran away, off to conquer the giant bacon.

Her new gang of transfixed friends followed close on her heels. They didn't leave her side until their skittish mother finally took them home, and their eyes followed Schuyler until they were out of sight.

She was already making a new friend by then.

A Prayer for My Daughter

I have walked and prayed for this young child an hour
And heard the sea-wind scream upon the tower,
And under the arches of the bridge, and scream
In the elms above the flooded stream;
Imagining in excited reverie
That the future years had come,
Dancing to a frenzied drum,
Out of the murderous innocence of the sea.

From "A Prayer for My Daughter"
by William Butler Yeats

Things to do in Plano

Monkey love
Originally uploaded by Citizen Rob.

Sometimes it pays to read your local news.

A man right here in Plano, Texas had his monkey taken away from him, and was then accused of sending monkey porn to his incarcerated pet. Or maybe it wasn't monkey porn, says the guy who originally made the allegation but is now reconsidering his opinion. Maybe it was just the heartfelt expression of a guy who loves his monkey.

I really do think that this story ran in the paper for no other reason than to serve as an excuse to print the following quote:

"I don't have sex with my monkey. That's absolute crap," Mr. Crawford said. "Why would I do that? I gave him an audiotape, but it didn't have anything like that on it. It said, 'I'm coming home, I'm coming to get you. Daddy's coming, he's coming to get you,' " Mr. Crawford said.

"I don't have sex with my monkey." It's my personal belief that if you find yourself in the position where you feel it necessary to make that statement to the news media, you might just have a serious image problem. Also, you sound totally guilty.

Shepherds of the Broken

Originally uploaded by Citizen Rob.

I'd like to find a new term for special needs parents, one that doesn't include the hated words "special needs". I have no idea what, though. "Shepherds of the Broken", perhaps.

I don't speak for all or even most of my fellow shepherds. But judging from many of the people I've met, both online and in this grand rough world, I know I speak for some. I speak for some of the parents of the broken who don't get divorced and don't give over the care of our broken children to the state or to someone else seemingly more qualified than our clumsy, stupid selves to help our kids. We are shepherds in the storm. We stand, dumb but firm, against the winds, and we endure.

Shepherds of the broken engage in acts of compromise, often in ways that are hard to explain and which perhaps don't make sense to the neurotypical world.

We find that we stand apart from other parents, that the things that thrill us have a whiff of desperation about them, such as when our broken children achieve things that are both commonplace and yet sometimes seemingly out of reach. When I discovered that Schuyler received a perfect score on her spelling test on Friday, like any other first grade child might, how do I explain how both my joy and a little bit of sadness fed off of the low expectations she's battled in the past, where the very device she uses to take that test was considered to be out of her intellectual reach?

And yet, there are fellow shepherds out there who celebrate when their child survives another year, another month. When I write about Schuyler's struggles, so much less terrifying than theirs, they don't necessarily look at me with pure joy, but perhaps with something very gently tainted with contempt. And I don't look at them with sympathy alone, but also fear, and an impulse to step back from their world.

The most surprising thing I've discovered about being a shepherd of the broken are the limits of community and empathy amongst fellow shepherds. I've had tense discussions with other parents that have degenerated into "you think YOU have problems", as if our broken children were competing to see who had the most monstrous of monsters. I have discovered over the years and particularly of late how lonely our shepherding lives can be. Standing outside a neurotypical world, we also stand apart from each other. Most of all, we find ourselves standing apart from our spouses and families.

Yes, shepherds of the broken live in a world of compromise. The divorce rate among us is higher than the general population, but for a good number of us, splitting up is an unworkable option. We learn to forgive transgressions so long as they are against each other and not our broken children. We learn to accept that our relationships are bound in ways that the unbroken can never completely grasp. We're alone in profound ways, working with the one person in the world who can understand what we're going through and yet also the one person who can't ease our sorrow, steeped as they are within their own. Our fellow, spousal shepherds have their own pain. Locked together in a relationship that becomes mostly, then entirely, about our shepherding duties, we sometimes turn to religion for help, or we try to find time to pretend that we're just like the rest of you, but mostly we turn inwards, to the space that is ours alone. We labor together as partners, as caregivers and educators and advocates, and perhaps eventually that's all we become to each other. And the weirdest part of that is how okay we are with it, because as lonely as that kind of relationship can be, it is that partnership against the monster that we depend on all the time. It's the one thing that we can't do alone.

Shepherds of the broken try to build lives like the rest of you. We can't expect you to completely understand how we live and how the rules that govern much of society stopped working for us a long time ago. It's not just our children who stand apart. We shepherds of the broken find ourselves unable to build relationships. Our marriages and families are eaten by our children's monsters and the people we reach for in the unbroken world are unable to reach back.

If there is one thing that Julie and I and countless other parents have found about having a broken child, it is that in the end, it can be the loneliest life in the world. It can be like an emotional limbo.

And yet.

Yet through it all, Schuyler stands at the center, and when every other relationship falters, her love is the light that guides me and the warmth that sustains my life. She is like a star, from whose gravitational pull I can never escape but whose very existence gives life and purpose. She is both goddess and jailer.

In my old journal and also in my book, I quote a song by Little Willie John that I think perfectly describes this world of the shepherd of the broken. I think perhaps it's time to do so here, too.

My love, my love is a mountainside
So firm it can calm the tide
My love for you is a mountainside
It stands so firm it can calm the tide
That's why my love, my love is
A mountainside

My love, my love is an ocean's roar
So strong, so strong that I can't let you go
My love for you is an ocean's roar
It's grown so strong that I can't let you go
That's why my love, my love is
An ocean's roar

My love is longer than forever
And endless as the march of time
'Till ninety-nine years after never
In my heart you'll still be mine
Because my love
My love is a deep blue sea
So deep, so deep that I'll never be free
My love for you is a deep blue sea
It's grown so strong that I'll never be free
That's why my love, my love is
A deep blue sea

Eyes Wide Shut

Originally uploaded by Citizen Rob.

I was watching The Today Show this morning because it was far too early for actual quality programming. There was a segment called "Let's Talk Motherhood" (because remember, on The Today Show, we all live in Fred Flintstone's America, where dads are too busy hunting mastadons to worry about parenting), and one poor put-upon mom was bemoaning her momly life.

Laundry? Cooking? Pushing a wheelchair or trying to keep her aspirating, disabled child from choking to death when she eats? No, this mom's burden is a child who apparently talks too much.

"Last night my daughter was reading something, and she just kept going on, and on, and on, and I went 'Ugh!' And she said, 'What's the matter? Are you tired of my reading?' And I'm like, 'No', but it's just like 'Whew!'"

Whew, indeed. If you'd really like to gain my sympathies, by all means, tell me how your kid never stops talking. No, please.

As I've mentioned before, I belong to a polymicrogyria (PMG) discussion group. I almost never post, however, mostly out of a weird sense of guilt. I have yet to read a post by another parent with a child who is better off than Schuyler, whose PMG mostly affects her speech so far. I read stories by parents whose kids are in wheelchairs or who require a feeding tube just to stay alive. Almost all of them have kids who suffer seizures. Every so often, but not as rarely as it should be, one will post that they lost their child, to a massive seizure or a choking incident or simply a quiet death in the night.

The thing about these posts, however, is that they are almost never complaining. If they're talking about seizures, it's to compare medications and treatment strategies with other parents, or simply to calm another parent going through some new manifestation of their child's monster. I posted there the first time Schuyler choked, and I'm sure that I'll be back when her first seizure hits. But for now, I mostly just read, silently thankful for Schuyler's good luck, within her bad luck.

The parents who have the most cause to complain also have the most reason to understand how much worse it could be. I've had people ask that fun hypothetical question, "If you could take away Schuyler's monster, would you?" It's not entirely hypothetical; I spend every day trying to do just that. If I can't take it away, I'll settle for cutting it down to size, muzzling its snout and blunting its claws.

But if I could go back in time and chose whether or not to have her, knowing ahead of time the world we'd be entering? That's easy. The first thirty-two years of my life were rehearsal. I started living for real when Schuyler was born. The angst I feel when I put her on the bus in the morning or the pain of watching her struggle to communicate with another kid who then makes fun of her when she runs off to play, that's the pain of living and the price I pay in order to have the privilege of walking through the world with her. She's the best person I know, hands down.

When I see a mother complaining on national television because her kid talks too much, fucking READS too much, I realize how insignificant that price is. I don't think you have to have a broken child in order to appreciate how fragile and amazing life can be. I just think you have to be paying attention.

If you read the things I write about life with Schuyler and you feel pity for us, then I'm just a shitty writer. If you read me and find yourself, against all logic and convention, feeling a little bit jealous, then I've gotten it right.

My Review of the Battlestar Galactica Season Finale

Huh?

Why did my favorite TV show just turn into Lost?

I also can't believe it's not going to return until my book comes out. They have some explaining to do when it does.

Blogging about blogging about writing? Fascinating!

Originally uploaded by Citizen Rob.

I wrote a long post over at Monster Notes, my bookety book crap blog, about my publisher's decision to assign a subtitle to SCHUYLER'S MONSTER and my thoughts on the direction I hope that goes. Go read it if you're interested in the process, especially if you think you might have some good suggestions. God knows, I've personally got the crappy ones covered all by myself.

It's been a quiet, quiet Sunday afternoon around here. Schuyler and I watched King Kong on HBO earlier, and as usual, she cheered for Kong when he delivered the smack to his dinosaur friends. Watching Kong together is one of Schuyler and my most sacred rituals.

Before you send me indignant hate mail, I realize that it's perhaps not the most appropriate movie for a seven year old. But one more minute of Noggin and I was going to end up with my picture on CNN, with helicopters circling the building.

Besides, I'm not convinced that those rules really apply to Schuyler. She's experienced uglier monsters than Kong.

"The Wrath of Khan" was taken

(Originally posted at SCHUYLER'S MONSTER.)

Back in December, when I participated in the Mediabistro "Blogger to Author" panel, I think I came across as sort of peppy and happy and naive. The book deal was like a magical thing, sneezed in my face by a unicorn or something. Considering I was there as Tragedy Dad, I was surprisingly pollyanna about the whole thing. My book was still being written, and I had no idea what the process was going to be like.

When we were all discussing the differences between writing a blog and writing a book, I didn't have much to contribute (although I did manage to jabber on like a Cowboy Woody doll with a broken string anyway). This week, I learned something that would have made a good point at the panel.

When you are writing a blog, you have complete control. For better or for worse, it's all you, the editorial decisions, the layout, everything. If your blog blows up in your face, it is a self-inflicted wound.

This week, I got my first taste of the collaborative process inherent in having a book published.

I received an email the other day from my editor at St. Martin's, letting me know that they needed to select a subtitle for my book and asking if I had any thoughts on the matter.

Now, I hadn't actually considered a subtitle. I always thought that SCHUYLER'S MONSTER was a title that worked really well on its own, steeped in allegory and mysterious enough to catch the attention of a curious potential reader. The thing I hadn't really considered was the reality of a world in which tens of thousands of books are published every year, a world where people are more likely to look at it and say, "Shooler's Monster? What's THIS crap?" before moving on to the latest Sudoku collection.

So yes, after a moment of twitchiness, I saw the necessity of a subtitle if I'd like to actually sell any books.

The tricky part is that the subtitle will ultimately be decided by St. Martin's Press, not me. And really, that's fine. The subtitle is a marketing tool as much as anything else. It tells potential readers, as well as reviewers and book buyers, what the book is about at a glance. In the case of reviewers and buyers, it does so in a situation where the cover art is not yet in place; galleys go out as text only. So St. Martin's will choose the subtitle, which is fine with me since they're the ones who sell books for a living.

My concern is that the people who will be making this decision will largely be people who haven't read the book. Again, that's perfectly reasonable; in a company that publishes over 700 titles a year, no one's got the time to read them all, or even most of them.

But in the case of SCHUYLER'S MONSTER, I'm afraid that without reading it, the people who make the decision on a subtitle may be imagining a very different book, one more suited for a Hallmark card or an After-School Special. I'm afraid of a customer buying "Schuyler's Monster: An Inspiring Story of a Family's Noble Struggle Against Blah Blah Blah", only to read it and think to herself, "Wow, he sure says 'fuck' a lot."

I sat down and wrote what can only be described as a scary, Unabomberesque manifesto this weekend, giving my editor my thoughts on this whole subtitle and genre classification issue. Poor Sheila. She asked for a few thoughts, and she got my Schuyler's Monster dissertation instead. She’s going to end up in the Federal Witness Protection Program before she’s done with me.

The most relevant part (as opposed to all the irrelevant stuff that perhaps I should have edited out in the first place) was this:

Simply put, I believe that the subtitle should reflect the experience of the family, not the disorder. The disorder gets the title itself; the subtitle should express a larger truth. The book is about a little girl and a family (specifically a father, which I think is somewhat unique among the books that are out there), and the experience they have. The father is a little lost and ill-prepared, and the girl is tenacious but without a voice. In the end, the father finds strength, but it is the little girl who perseveres and triumphs. She gets help from her parents and the schools and situations she ends up in, but her ultimate success comes through her tenacity and fearlessness.

The primary elements of the subtitle, then, could be more about the experience of being a father in over his head and more about a girl without words, rather than about a struggle against a disease. Because really, it has never been entirely about fighting polymicrogyria. Polymicrogyria won its battle before she was born, it won simply by existing. The story has been about taking what the monster gave her and finding her way and her voice.

Am I making sense? I don't see this as a parenting book or a special needs book so much as a memoir about a journey. Even if the book gets categorized as "parenting" (which I sort of hope it doesn't but which is WAY beyond my scope of experience or expertise), I hope that it gets marketed as a more universal experience: the world can overwhelm, the people selected to fight the big battles often feel like they are not the right person for the job, and they step up to the plate anyway because their actions determine the fate of those they love the most. And also, the smallest person can hold the deepest wells of strength, deeper ultimately even than those of the persons who set out to protect and save them.

(Schuyler as Frodo? Perhaps overstated, but you get the idea.)

[...]

But if this book carries the right title (and subtitle) and jacket cover, then hopefully it grabs the attention of people who may have neurotypical kids or no kids at all. The common experience of "holy crap, I'm not ready for this" and "the experts are telling us one thing, but we know better and are prepared to fight for it" and "that little person can't even talk, but she's tenacious and in the end can take care of herself and thrive"; THAT'S what I think the book should be about. I don't know if that's the book I wrote, but if it's not, it's because I wasn't a good enough writer, not because I'm wrong.

My friend Tracy pointed out that it is probably unrealistic that I can avoid the parenting pigeonhole, and she's probably right. But I wanted to at the very least put my thoughts out there, let them enter the discussion and then step away. I don't expect St. Martin's to say "Please, tell us more!" I expect them to make their decisions based on their experience as a successful publisher. I just wanted them to hear my point of view so it's there in the room.

As for my subtitle suggestions, I came up with a few, none of which I think are going to make the final cut. My favorite was:

Schuyler's Monster:
Odyssey of a Lost Father and a Girl Without Words

Although really, I sort of like "Mime School Dropout", too.

Damocles

Schuyler
Originally uploaded by Citizen Rob.

Schuyler has her reality, and I have mine.

I was looking at my stats today and found this blog entry, in which a blogger dreamed that she came here and found my blog empty, except for a single word: "dead".

"I woke up crying," she wrote, "thinking Schuyler had her first big seizure and her little body couldn't handle it."

When I read that, I was stunned. I just sat here and looked at my screen silently for maybe a minute or two. I wasn't upset with the blogger; indeed, I'm touched that people care enough about Schuyler to allow her to get inside their heads and fuck up their dreams. And really, if something did happen to Schuyler, I'm not sure that I'd have the will to post much more than a single word. But in a single short entry, this blogger managed to land on my worst fear with both feet.

In my book, I quote Dr. William Dobyns as saying, "I can tell you I’ve only had two patients die from their seizures." He meant it to be comforting, I'm sure, but of course it wasn't. In my naivety, it hadn't really occurred to me that she could die from them.

But here's the thing. Schuyler hasn't had seizures, not a single one. According to Dobyns, they tend to manifest between the ages of six and ten, so she's just now entering the danger years, but I don't think she's ever had one, not even a small absence seizure. (When she was young, I thought she'd had them, but apparently they typically come in groups, not singly. According to Dr. Dobyns, Schuyler was probably just zoning out like little kids do. Well, little kids and me.) The odds are about 85-90% against her dodging seizures, but she's beaten the odds before.

So Schuyler goes through her life as happy as a butterfly, unaware or unconcerned about the thing that literally keeps me awake at night, this Sword of Damocles that she never notices but which I rarely take my eyes off of.

Julie feels the same way. We very rarely leave Schuyler with a babysitter, and never for long, in part because of our fear that it could happen, that first one could hit and Schuyler wouldn't be with her mother or her father or her teachers. It's silly, and we know it, but there it is. We don't even leave her with family very often. Schuyler is literally never alone, except when she sleeps. And I worry about it happening then.

People tell us that we should adopt Schuyler's carefree attitude. If she's not worried, why should we be? It has always felt to me, however, that her happiness has a price, and if we are to elevate her above fear and worry, we do so while standing knee-deep in it.

I love the person Schuyler is becoming. I love her fearlessness, and I love her punky attitude. I love that given a choice between girly pink and camouflage, she'll unhesitatingly wear both at the same time. Most of all, I love how she adapts.

We got a call from Schuyler's Box Class teacher today. The class was constructing sentences on their devices, and Schuyler was having a hard time finding the word "but". Impatient with the device's icon tutor, which shows the path to any word you type in, Schuyler stood up, laughing, and pointed to her ass. And then did a little "look at my ass" dance. She found her "but".

The biggest difference between Schuyler and her father? Her unflagging ability to take her monster and dress it up in clown clothes.

Courtesy of Robert Rummel-Hudson

This morning, I went over to Kerry's to take some photos of some old newspapers (and clean up the images in Photoshop so they wouldn't look like they'd been yellowing with age for ten years) for a Court TV story that was running later in the afternoon.

Later, when we watched the program, Catherine Crier Live (on which they got the name of Kerry's book wrong, d'oh), I got a fun surprise.

I don't really have anything profound to offer. I just thought it was random and cool.

Beloved M

Big punkass, little punkass
Originally uploaded by Citizen Rob.

As a parent, there's a thing that I think a lot of us secretly enjoy, even though we absolutely know we shouldn't. I don't know, maybe it's just me.

When we go away from our families for a few days, we find it guiltily satisfying when our kids freak out at our absence. I know, that's awful. But with apologies to Julie and my family and friends, there is only one person in my world who both gives and receives unconditional love.

I missed Schuyler like mad. Apparently she felt likewise, judging from the reports I got from Julie while I was away and also from the hug/tackle/leech-cling I experienced at the airport when I got back.

I did have a moment of genuine, real guilt concerning my trip to California, and it actually came yesterday, while I was at work. Schuyler's on Spring Break, and instead of hitting the beach and getting conned into appearing in some Mute Girls Gone Wild video, she has been at home with Julie. I get the impression that while their love for each other is as strong as ever, they have nevertheless had enough quality time together for a while.

Anyway, yesterday I got a call from Julie.

"You have to talk to Schuyler," she said. "She's crying hysterically."

"Huh?" I said with my usual eloquence. "Why, what's up?"

"She thinks you're not coming home again."

Well. Hello, I'm an asshole. Nice to meet you.

Anyway, I managed to calm her fears, and later today we're going to pile into Beelzebug, just the two of us. After I do a few things at the office, we're going to take a road trip.

Neal Pollack, author of the new book Alternadad, is going to be doing a signing/reading at Book People in Austin. I'm reading the book right now and enjoying it immensely. He's taken some heat for some aspects of the book, including an editorial in the New York Times by David Brooks that reads like an old man standing on the porch in his boxers and black socks, yelling at the neighbor's kids to stay off his goddamn lawn. I think Neal's being criticized not so much for the book that he's written, but for either the book he didn't write or the one that people like to think he's written. Taken on its own merits, Alternadad is an excellent read.

So if you're an Austinite and you're not doing anything tonight, check out Neal Pollack at Book People, and watch the crowd. You never know who might be lurking.

Hint, hint.

(Schuyler and I will be there. I'm subtle like a blow to the head.)

UPDATE: We drove to the office to take care of some business, and got delayed, and then it got warm outside, which is nice for a day of hanging out together but not so much for a three hour drive. Schuyler and I decided to stay in town and have a free day instead. So change of plans. No Austin trip for us today; stalkers will have to wait for the book to come out and kill me at a signing instead. (Buy my book first, please.)

Even the cliches were fancy

Obligatory photo. It's a law, I believe.
Originally uploaded by Citizen Rob.

The transition from going on a cool trip to returning to regular life is always a little weird, but this time it felt even more surreal. Two nights ago, I was on a kind of photographic celebrity safari. Tonight, I'm cleaning goop out of my pug's eye.

So yeah. Goodbye, California dreamin'. Hello, eye boogs.

My feelings about California after my first trip are almost entirely positive, I'm happy to say. I met many very cool people, I saw lots of swell sights, and I think I made some promising professional connections.

I spent a day in San Diego with my old friend (and best man at my wedding) Joe, who took me to see a very topical play called The Four of Us. I've been dealing with the unexpected and occasionally shitty way that finding some measure of new success as a writer can affect old friendships, so I was really happy that he found this play and thought of me. Our friendship is solid, largely because for someone who never ever writes a damned thing, Joe's an excellent writer. If that makes any sense.

And San Diego? Almost weirdly beautiful, even with the crazy tall eucalyptus tree in Balboa Park (next to the Museum of Man) that I was convinced was waiting to kill me. Seriously. If you're from San Diego, I'll bet you know the one I'm talking about, in front of the Old Globe. Lit up at night, that thing is Treezilla. I suspect it pulled itself up from the ground and is making it's way to Dallas as we speak. Man oh man oh man. It seriously gave me the willies, I can't explain why. Evil evil tree.

The one thing I wanted to mention about Los Angeles is this: people there will give you a ride at the drop of a hat. My first night there, at the media thing (which I have been told is Not To Be Blogged, so just imagine my fabulous fun), a nice girl with a very cool VW Bug that runs on biodiesel (the blend of the evening? walnut oil!) offered and gave me a ride to my hotel after talking to me for no joke, like ten seconds. Then on Monday, I asked a waiter about getting on the right bus to get to my photo shoot, and he ended up giving me a lift on his way home. And THEN, after the shoot, a remarkable woman who is one of the directors of an amazing organization called Stop Prison Rape gave me a ride. Not once did I ask or even do that shifty "Oh, if ONLY I had a ride home!" thing, either. It was so nice that it was almost creepy, although that probably just means I'm a selfish ass. At least I'm self-aware.

So, Angelinos? You are very very cool, unless you drive a taxi. In which case, you are a vampire. Seventy dollars to get from LAX to Hollywood? Thanks for the lift, Nosferatu.

"I'm leeeeavin' on a jet plane..."

I'm sitting in the airport, leaving for LA in about an hour. I'm excited and nervous. Excited because I've never been to California, and nervous because I'm attending a dinner meeting thing with some cool, high-powered industry people. I'd like to make an impression beyond "some fat yokel". Although, you know, I'll take that if I have to.

I talked to Kerry on my way to the airport, and he's crazy busy with his book promotion tour. He did twenty-eight interviews and radio show phone-ins yesterday. I suspect that's a nice problem to have. He sounds exhausted and a little flustered, but to be honest, he also sounds happy. Good for him.

As for me, I'm happy to be getting out of town for a few days.

That's it. What, you were waiting for something meaningful?

Um, okay, a quick political observation. In recent weeks, both Barack Obama and John McCain have referred to the deaths of American soldiers in Iraq as a "waste", and both have quickly backtracked when patriotic eyebrows began wiggling menacingly across this great land.

Two candidates for the presidency are soooooooooo close to showing the courage to speak the truth about the war, but in the end, both hedged. I am both heartened and disgusted. As for the Democratic Party, which called on McCain to apologize for using the term mere weeks after Obama did the exact same thing, WTF? Knee-jerk, safe politics are going to serve you exactly as well in the next presidential election as they did in the last two. Show us something better, if you can. Some integrity and ideological consistency might be a good place to start.

I watched the Bob Woodruff story on traumatic brain injuries last week, and it rejuvenated all my anti-war feelings in a way that I hadn't felt in a long time. I don't think I'm going to be able to vote for anyone of either party who has supported this war, certainly not within the past two years or so. That narrows my choice of candidates considerably, at least as the field stands now. Who knows what will happen in the coming months?

Wouldn't it be funny, after my notorious Nader "Green Days of Shame" of 2000, if I ended up voting for Al Gore?

Okay, time to fly. See you when I get to the land of the Beautiful People. I assume I will feel like Jabba the Hutt the whole time.

Chasing Justice

Kerry & friend
Originally uploaded by Citizen Rob.

My friend Kerry Max Cook's book, Chasing Justice: My Story of Freeing Myself After Two Decades on Death Row for a Crime I Didn't Commit, hit the stores today. I'm listening to him on NPR's Diane Rehm Show right now. He's doing a great job, but then, his story is compelling, almost unbearably so. He's my friend; we hang out and take our kids to movies together, and yet when I look at him and watch him move through the world, I still can't grasp that he survived this experience and came through the other side.

Here's how HarperCollins describes his story:

Wrongfully convicted of killing a young woman in Texas, Cook was sentenced to death in 1978 and served two decades on death row, in a prison system so notoriously brutal and violent that in 1980 a federal court ruled that serving time in Texas's jails was "cruel and unusual punishment." As scores of men around him were executed, Cook relentlessly battled a legal system that wanted him dead; meanwhile he fought daily to survive amid unspeakable conditions and routine assaults. When an advocate and a crusading lawyer joined his struggle in the 1990s, a series of retrials was forced. At last, in November 1996, Texas's highest appeals court threw out Cook's conviction, citing overwhelming evidence of police and prosecutorial misconduct.

And finally in the spring of 1999 long-overlooked DNA evidence was tested and it linked another man to the rape and murder for which Cook had been convicted. Today, Cook is a free man and the proud father of a young son.

Kerry Max Cook was convicted on the basis of some very dubious testimony by one witness (who described a person with an entirely different appearance) and a fellow prisoner who claimed that Kerry confessed the crime to him, despite the fact that Kerry was held in solitary confinement at the time. The evidence against Kerry consisted of a fingerprint on the victim's patio door. An "expert" for the prosecution testified that the fingerprint had been left during the time frame of the murder. Such a time-sensitive determination on a fingerprint is scientifically impossible; they might as well have consulted a psychic.

The Kerry Max Cook that I know seems so far away from that life. He's a warm father and playful husband with a quick sense of humor a wildly optimistic nature. He talks openly about his terrible story, but his eye is on the future.

In a few days, I'll be flying to Los Angeles to join Kerry for a big celebrity book party being thrown for him. I'll be there as his photographer, and as his friend. I hope his book does well, but more than that, I hope Kerry gets the life he deserves.

God knows, if anyone has paid in advance for happiness, it's Kerry Max Cook.

Boring but brief

Two quick operational notes:

1) Apple's iWeb application makes pretty websites, by golly, so I've been using it for my other nonbloggerly pages. The problem is that it's not easily customizable, and if you're not hosting your site on Apple's servers, things like blog comments don't work without third party (or possible divine) intervention.

Well, I found a way to do it, I think, using my old HaloScan comment account from my journal. So far it doesn't seem to function consistently, however, and it formats weirdly. I'm still trying to tweak it. Still, it appears to be working, kind of sort of maybe perhaps, so if there's anything that you ever wanted to comment on or abuse me for over at the book blog, now's your chance.

(Someone also told me that the "comments" link doesn't actually look like a link. Perhaps I am going to have to break up with iWeb soon.)

2) In the next week or so, the name and URL of this blog will be changing, in part for boring legal reasons and also to bring it into parallel with the book site. The content and feel won't change (not sure if that's good news or just... news), so not a huge deal. Once it changes, this URL should still take you here, so I won't just disappear. Just a little heads up.

Martin

Martin
Originally uploaded by Citizen Rob.

A few weeks ago, we took Schuyler to the Dallas Museum of Art. She had a good time looking at all the smartifying stuff, I'm happy to say, but honestly, it was when we ended up in the gift shop that we really started having fun. Schuyler, because she's seven, and me because, well, because I'm me.

They had puppets, and she fell in love. Which is how we ended up with a monster. Schuyler's new monster.

We call him Martin.

There's something I've wanted to try with Schuyler for a while, an idea I had during a box class parents' meeting a few months ago. Schuyler's condition hasn't affected her in some of the more serious ways that other kids suffer from, like seizures and serious dysphagia. (When I say "suffer", I'm not kidding; the polymicrogyria group I belong to is a regular source of truly sad stories.)

But when it comes to her speech, she's been hit hard. She is completely nonverbal, with almost no consonants at all. The thing is, however, that she's got all the vowels and she's got perfect inflection. She's trying, so hard that it will break your heart, and furthermore she hears the words and sounds that she's trying to make. If you hand her something, her "thank you" sounds so convincing that unless you're paying close attention, you don't realize that she actually said "Ain oo".

Ironically, it's those inflections and sincere attempts at speech that can sometimes stand in her way of moving forward on the Big Box of Words. Not at school, I don't think. In her class, all the cool kids talk like cyborgs, so she's excited to do the same.

(That's unless she's feeling like a punk, as she was yesterday, although that may very well be because her box class teacher has been out this week. Apparently harassing substitutes teachers is a genetic trait, because I was a dick to every sub I ever had. One more item on the list of crimes that the devil will be reading off when I die, although honestly, I'm sure it would be on like page thirty.)

When she's at home with Julie and me, however, Schuyler gets lazy with her device, for the simple reason that we can understand a lot of what she says. She's a smart kid; she knows this, even when we pretend otherwise. When she's with us, she doesn't like to use her device.

Thus my idea for the puppet. I just didn't expect it to work so well.

She won't always use the box for us. But it turns out that for Martin? She'll do anything. Last night we studied for a spelling test that she has today, but it wasn't until Martin started asking her how to spell the words on her list that she became enthusiastic about it.

Schuyler's a complicated person, and always has been. She knows that Martin's just a puppet, and that her father is the one manipulating him, just like she used to understand that when I said "Don't eat that!", the goal was to get her to, well, eat that.

Like her father, Schuyler's defining characteristic is that she does not like being told what to do. Monster or not, she negotiates her own terms with the world.

Grey Anatomy

Oh, good lord...
Originally uploaded by Citizen Rob.

I was making some minor but detailed changes to a photograph today, the one I'm using for my promotional headshots for the time being, and in doing so, I had to blow it up to actual pixel size. And that's when I saw it.

I'm going grey, by golly.

It's in its early stages, and I'll certainly take that over balding, only because I'm pretty sure my bald head would be all lumpy and fat-rolly. Not a bad look for a pro wrestler or a bouncer, but not really the vibe that I'm shooting for.

The thing that concerns me is that it's happening quickly, like in a matter of a few short months. It's like my body's getting ready for my next birthday. You know the one. Thirty-ten.

In case you're wondering, the answer is no, I haven't gotten my edited manuscript back from St. Martin's yet. I assume they had to order more red Sharpies.

Armchair Apocrypha

Speaking of music I like, NPR is featuring Andrew Bird on their website. Specifically, they're focusing on a song from his new album, Armchair Apocrypha.

Let's take a hypothetical scenario for a moment. Suppose a hypothetical but extremely cool reader sent me a hypothetical copy of the new album, due out in a month or so. What would my hypothetical opinion be?

I'd say it was awesome, with a move away from the acoustic sound of his most recent stuff but once again totally unique.

You know. Hypothetically.

(Edited to make it clear that I have (hypothetically) already been sent the cd. This wasn't an attempt to weasel free stuff out of anyone. Don't worry, you'll know when I'm mooching.)

Bug

The flu sucks.
Originally uploaded by Citizen Rob.

Well, my weekend plans have changed slightly.

She seemed absolutely fine when she got on the bus, but about an hour later, we got the call. Schuyler is suffering from either the flu or demonic possession.

It sucks when any kid is sick, but with Schuyler, it's extra heartbreaking because she can't really tell us very much about how she feels. The Big Box of Words helps to some extent, but it requires a certain amount of concentration and clarity that might just be somewhat lacking at the moment when your stomach is threatening to go all Vesuvius on you. Sometimes there's not much of a high-tech alternative to yelling "Gotta puke!"

We were practicing just now.

"So if you feel like you're going to throw up, here's a trash can," I told her as she lay on the couch. "Be sure to move Jasper out of the way first." (I swear, he looked worried.)

She nodded her head.

"Okay, so you need to let me know if you feel like you're going to be sick. What are you going to say if you feel like you're going to throw up?"

She opened her mouth and howled at me. "Aaahh!"

That'll do.

Cover story

(Originally posted at SCHUYLER'S MONSTER.)

When Wired writer and first-time novelist James Bernard Frost didn't care for the cover art for his novel World Leader Pretend, he hired artist Dave Warnke to design a funky new cover sticker to replace the one on the trade paperback.

The publisher in question is St. Martin's Press, the same people putting out Schuyler’s Monster. Well, of course it is.

The truth is, however, that I'm not concerned. For one thing, I think a cover design for my book is going to be pretty straightforward and simple. The title is short and striking, if I may be so snotty, and if there's one thing I think we can all agree on, it's that I've taken a few photographs of Schuyler. Finding one that works for a book cover shouldn't be a difficult task.

For another thing, when I went and read the story, I got the impression that while St. Martin’s Press didn't give the author what he wanted, they did at least make a good faith effort to change the elements that he objected to. He even admits that the whole story has been blown out of proportion.

No, what fascinated me about the story isn't some fear that St. Martin's is going to put a picture of an alligator or a killer robot on my cover. I'm more interested in the fact that if not for the GalleyCat article, I don't know that I would have ever heard of Frost's book or made it to his blog. It looks like I'm not the only one noticing because of this story, either.

Not every successful publicity opportunity comes from a marketing plan. I wonder how St. Martin's will react to this.

Quiet

Originally uploaded by Citizen Rob.

I know I've been quiet lately. I suspect that's not going to change any time soon.

Want to know what I listen to when I feel quiet? I found a short excerpt of one of my favorites.

Old & Lost Rivers, by Tobias Picker

I'm listening to it now. It's funny how the loudest noises in the head can be drowned out by something as quiet and ethereal as this.

I hope everyone's having a nice Valentine's Day.

The Twitchy Time

Why I am a writer, not an artist.
Originally uploaded by Citizen Rob.

I drew a bee, upon Schuyler's instructions. I believe that it is a very fine bee, and I don't particularly feel like putting my own face in front of a camera any time soon, so here you go. My mad skillz on display.

It is the twitchy time for me right now, which everyone told me would happen in the interim between turning in my manuscript and getting it back for edits and rewrites. I've also been told to enjoy the feeling that my book is actually, you know, mine, because soon I'll be fighting to hold onto some tiny measure of control over everything from the final content to the cover art to how it's described in the catalogue. I'm not too worried, if only because 1) I've heard good things about St. Martin's Press and how they treat their authors, and 2) there's not much I can do about it now anyway. Everything will happen in its own time and its own way.

Which is to say that yes, I am a big box of worry.

I may have some trips coming up to distract me from my empty mailbox. It looks like I am probably going to be going to Los Angeles next month for a few days, not for anything book-related but to do some photography work (and general entourage duty) for a friend who's got a big event going on, complete with real live celebrities, by golly. I'm looking forward to it; I've never been to California before, and it'll be a nice change, from self-promoting author to friend-promoting paparazzi. I am going to spend the next three weeks engaged in a strict regimen of deyokelization.

I may also be going to Austin this weekend to hang with some old friends from my former life at the bookstore, too. Nothing fancy about that one, though. Just a wacky themed party ("junior high talent show!") and an opportunity to be either embarrassing or amusing.

Or both, really. I have some ideas.

So yeah. Twitchy. Twitch twitch twitch twitch.

As good as a paternity test, revisited

Originally uploaded by Citizen Rob.

(At lunch, Dallas Museum of Art cafe)

Julie: (Splitting a pepperoni and mushroom pizza with Schuyler) Go on, try the mushroom, Schuyler. It's good.

Me: Bleagh.

Julie: Don't listen to your father. Mushrooms are tasty.

Me: Don't do it, Schuyler. They taste like feet!

(Schuyler eats the mushroom.)

Me: See? It tastes like feet, doesn't it?

Schuyler: Nooooo...

Julie: Ha!

(Schuyler laughs, then leans over in her chair and points to her ass.)

Sad day in Texas

Well, crap.

Molly Ivins has died, after a long battle with breast cancer.

Following as it does the death of Ann Richards, Molly's passing further thins the already shaky list of worth-a-shit Texans. When I think of her, I think of one of my favorite sayings. "Comfort the disturbed. Disturb the comfortable." It'll be harder work without her in the world.