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.

Oh, who are the people in your neighborhood?

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

Not in my Language

I don't have anything in particular to say about this, other than it makes me think a great deal about what goes on inside the minds of broken people. Not just the autistic or cognitively impaired but also (and I suppose inevitably) ones like Schuyler who exist in two worlds, the one in which we all live and which they find crude ways to send the rest of us little telegrams (using things like sign language or the Big Box of Words), and their own world of monsters, where they scream and laugh and deliver their own internal oratory that no one will ever hear.



"The first part is in my "native language," and then the second part provides a translation, or at least an explanation. This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not."

Zoboomafoo and Steve Irwin are corrupting the children of America

Originally uploaded by Citizen Rob.

This time, Schuyler tries her hand at fiction. I say fiction because really, outside of a pet store, Schuyler has never seen a snake. We don't exactly spend a lot of time in the woods, communing with nature. There is neither cable tv nor air conditioning in the forest, after all. Isn't that why we stopped living there and built actual cities in the first place?

Anyway, here's another little essay from Schuyler, written on her device at school.

---

I see snake in the forest. I feel scared. Snake is hissing. Baby snake is green. Snake is in tree.

Schuyler

---

I'm not sure why I keep sharing these with you since they're certainly not any different from what any other kid would write at school.

Well, I guess that's why, come to think of it.

The Pleasurable Irritation of the New

Originally uploaded by Citizen Rob.

A funny thing happened when I got to the end of my book. I wanted to keep writing.

During the last few weeks of 2006, with a deadline looming, my writing schedule wasn't pretty. It's no secret that I'm not the most disciplined writer. If Schuyler comes in the room and wants to play, I'm not sure she's ever heard me say. "Sorry, Daddy's writing." If she has a puppy in her hands, forget it. Oh, come on, now. Puppies?

As a result, I actually did most of my writing, particularly during November and December, after about 9pm. I almost never went to bed before 2 or 3am, and now that I'm done, I can't seem to shake the habit. I am an indescribable delight in the morning, no doubt.

It's a weird time for me and the book right now. I mailed off the manuscript to St. Martin's and my agent a week and a half ago, and I haven't heard anything since. If not for the UPS tracking website, I wouldn't even know for sure that they arrived at all. And the thing is, this isn't a bad thing. If my agent or my publisher were idle enough that they were calling me every time they got something in the mail, I suppose I'd be worried about how busy they weren't. St. Martin's Press publishes something like 700 titles a year. They signed me to write a book, and I did it. When they need something else, they'll let me know.

So the manuscript is in the hands of my editor now, and there's nothing for me to do until she gets back to me to let me know what needs to be changed or exactly how big of an error St. Martin's has made. I'm in this funny sort of period of self-doubt, made even worse the other day by a few hours spent at Barnes & Noble, looking at the other titles put out by my publisher and my editor in particular. Good lord, some of the people she's worked with in the past know their stuff. They are doctors and specialists. I'm a former music major. I like puppies.

The next phase for me is working on a marketing plan, which I'm already assembling pretty aggressively. I recently (and unexpectedly) made a local media contact that is yielding some very interesting things, and there's another mediabistro event coming up in Dallas wherefore to make with the schmoozing. It's all still pretty new to me. We'll see how I do.

All in all, things are looking good. "I eat the air, promise-crammed," as Hamlet said so very artsy-fartsily.

But still, I'm itching to write. Furthermore, I've already screwed up my sleep patterns for the foreseeable future, and my agent approved of my idea for my next book. (Well, one of my ideas, anyway; I have a few but only one ties in with SCHUYLER'S MONSTER in any real way, and for my second book, she thought I should stay close to home, so to speak.) So as crazy as it feels to me after just finishing the one book, I've begun working on the next.

Put simply, I'm writing a book about fathers. It'll be about the father I had and the father I am, and also about other fathers, good ones and bad ones and famous ones and the ones who go unsung or unmourned in their simple private lives. At my agent's suggestion (and one that I agree with), I'm not writing it in the form of essays or interviews; apparently I am to become a memoirist, and how pretentious does THAT sound? If you've ever read Sarah Vowell or Bill Bryson and seen how they weave their own narrative into their historical or travel writing, you'll have an idea of what I'm doing.

There are a few fairly well-known stories I'm planning to cover, like Paul and Gage Wayment and Joseph and Rolf Mengele (such cheerful dad stories!), but I'm very interested in suggestions from you about stories of fathers and their children that you think should be told. I'm interested in anything, although it would be especially nice to hear about fathers who aren't necessarily famous (and who aren't murderous Nazis or have ever accidentally killed their children, since I seem to have those covered). Drop me an email if you've got a suggestion or a good story to tell.

Look at me! Not only am I subjecting you to writing about writing, which is always fascinating, but I'm also letting you research my next book for me, too. My car's kind of dirty if anyone feels like coming over to wash it. Just saying.

Of mermaids and aphasia

Originally uploaded by Citizen Rob.

Schuyler loves mermaids. If you ask her, she'll tell you that she's a mermaid.

We were at Target today, buying much-needed clothes for her, and as we wandered the store, we ended up in the movies section. When she found the dvd of The Little Mermaid, we realized that Schuyler never actually seen it. She'd seen the crappy tv series version, but never the movie itself. We got it for her, because we're swell.

I don't remember when I saw the movie originally; when it came out in 1989, I was in college and, to be completely frank, I was mostly drunk. I doubt very seriously that I was seeing a great many Disney films. Still, it's definitely been a few years since I'd seen The Little Mermaid, long enough that I'd forgotten the deal that Ariel makes with Ursula, the giant, squid-legged, fat villainous drag queen, in exchange for giving her some legs.

Schuyler was already captivated by all the mermaids. But when Ariel had her voice taken away, something occurred to Schuyler, something that in all these years she's never actually come out and addressed with us on her own initiative.

For the first time in her life, Schuyler told us that she can't talk.

She pointed to the television and then pointed into her open mouth while shaking her head. She then pointed to herself and did the same thing. "I don't talk," she said over and over again in her strange, no-consonant language that we can usually understand but which is pretty much Martian to the rest of the world.

She then watched the rest of the movie with deep interest. When Ariel got her voice back, Schuyler turned and looked at us with an unreadable expression, as if waiting for an explanation. I couldn't tell if she was sad or just calling bullshit.

After the movie was over, Schuyler clearly wanted to discuss the issue further. She continued to tell us with her gestures that, like Ariel, she also had no voice. When Julie pointed out to her that she had her device to speak for her, Schuyler very carefully searched for just the right words, typing out "no mouth" at first, but frowning and deleting her unsatisfactory choice. I don't think she knew exactly what she wanted to say, only that she saw something that resonated with her own life, and wanted us to understand.

I felt (and still feel, actually) a heavy sadness about the evening, the same way I do every time Schuyler faces a harsh reality. Still, I can't help but think that something really important and positive happened tonight, even if it was accidental.

That's usually how Schuyler's big moments happen. They sneak up on us, and leave us pondering them long after Schuyler has grabbed the evening's carefully chosen dolls and climbed the ladder to her bed.

I can only imagine what she dreams about. Perhaps she speaks in her dreams, as she does in mine.

Autobiography

Schuyler (b&w)
Originally uploaded by Citizen Rob.

This was sent home by Schuyler's teacher, exactly as it was printed off from the BBoW. Apparently the impulse toward memoir is genetic.

---

I am a girl. I am 7. I have no brothers. I have no sisters. My birthday is December 21st. I like to dance and play with puppys. I love puppy.

Schuyler

---

I wonder if they were specifically asked about siblings. If not, that part's a little poignant.

It’s in the hands of Fate and UPS now

I was starting to get a little twitchy, editing and re-editing, adding little bits and generally obsessing over the manuscript. When I finished the manuscript last week, it stood at about 85,000 words; since then, it grew by another 2,000.

I finally decided today that enough was enough. As of about 8:30 tonight, three copies were on their way to New York; two for St. Martin’s and one for my agent. They should get them in about a week.

I feel like I just sent a kid off to college. What do I do now? I guess I’ll start another book, what do you think? Here goes nothing...

Eighty-four

Schuyler
Originally uploaded by Citizen Rob.

We had our monthly AAC Parents Meeting last night at Schuyler's school. It's always an interesting and humbling experience, spending time with other box class parents. It serves as a reminder that most of them (well, all of them, actually, if I'm not mistaken) have tenacious and smart kids who, in their own individual ways, are nevertheless either slightly or significantly worse off than our daughter. Schuyler is the luckiest of unlucky kids.

Before the meeting began, the two members of Schuyler's Assistive Technology team who have been working with her from the beginning pulled us aside and said they think Schuyler is ready to move up to the next level on her device. "She's reached the point where she needs more words," they said.

Her device is currently set to display 45 keys at a time. (I forget how many it showed when she first started using it, but she was moved up to 45 shortly after she started school in Plano.) This new setting will bring it up to 84 keys, which is the Big Box of Words' maximum setting. Schuyler will be using the same setting as adults who use the same device.

Well, I can't begin to tell you how happy we are, happy and proud and most of all vindicated. Last month, I was writing in the book about her frustrating days in her little Austin-area school two years ago, so the whole experience is still newly fresh in my mind. That old school district insisted Schuyler would be unlikely to be capable of using this advanced device. Although they obviously never said so, we always suspected the reason they kept lowballing her had as much to do with budget constraints as anything else.

Rather than admit that or deal with the funding issue head-on, they claimed Schuyler was incapable of using the BBoW at all. ("Not educationally necessary" was the phrase I remember most vividly.) Not even two years later, she's moving up to the most advanced setting. It's worth saying again, and if you're a parent out there with misgivings about what your kid's teachers are telling you, I hope you're listening.

They were wrong, and we were right.

And if we'd stopped fighting that fight, Schuyler would be sitting in a cramped little special ed class in Bugfuck, Texas, trying to teach sign language to her teachers who didn't know it and using little pictures on laminated cards to express the most remedial concepts. She wouldn't be educated so much as taken care of, and when she reached the age of seventeen, she would leave them, not as a high school graduate but rather as Not Their Problem.

Instead, she's in first grade with the other seven year-olds, doing the same work and taking the same tests and obsessing over the same Hello Kitty merchandise as all the other seven year-olds.

Her AT team set up the BBoW so that a button in the upper left hand corner would allow her to easily transition back and forth between the 45 count and 84 count setups. It's an all new language, the 84, and it's going to take some time for her to learn it. But Schuyler being who she is, spent the evening on the 84 side, exploring and trying stuff out, only grudgingly going back to 45 when she needed to say something. She's fascinated by the advanced mode. She's going to do what she did with the 45 and with the device itself when she first got her hands on it. She's going to figure it out and make it hers.

Underestimating Schuyler will bite you on the ass, every single time. She doesn't like being told what to do, and she doesn't like being treated like she's less. It's becoming clear that she might just be the smartest one of us all.

Daniel's Monster

Sometimes it's easy to feel like Schuyler is the only kid in the world with her particular monster. Statistically, that's almost true, really. It's rare, so rare that without the internet, the chances are excellent that we would never hear about another kid in the world with Bilateral Perisylvian Polymicrogyria.

We would have never read about Daniel John-Maxwell Spranger.

Daniel suffers from Schuyler's monster, but his monster seems bigger, and meaner. At the age of 17 months, Daniel can't walk or talk, his hands don't work properly and he can't eat unassisted. I like to think that Daniel is young enough that it's impossible to say "never" about any of those things; when Schuyler was his age, we were just figuring out that something was wrong. In Daniel's case, however, his parents found out earlier because his symptoms are more severe than Schuyler's.

Daniel also suffers from Infantile Spasms, or West Syndrome. It's a severe form of epilepsy that can result in literally hundreds of seizures every day and can cause chronic epilepsy, mental retardation and a variety of other developmental issues. Daniel's brain is about 80% affected by his monster. Think about that for a moment. Think about how hard that little guy has to work to do what he does. THAT'S a fighter.

I bring all this up because Daniel's family is fighting their monster, and if Schuyler's monster is a T-Rex, Daniel's monster is Godzilla. One reason I wrote my book was to help others in a similar situation, and so I'd be remiss if I didn't do so right here as well.

Daniel's family could use some help, just like we needed help and just like you helped us. On their site, you'll find a page called Donations for Daniel. They are raising money for medical expenses, therapy, medical equipment (including wheelchairs and walkers), meds, hospital bills, and even an AAC speech device, this time from a company called DynaVox that makes a line of devices similar to Schuyler's Big Box of Words.

Almost two years ago, you people changed a little girl's life and brought her hope, and that hope continues to bloom every day. Schuyler was a true internet success story. I hope you'll do what you can to make lightning strike twice on the same monster.

Thanks for indulging me.

Sometimes

Sometimes she makes me happier than I have words for.

Sometimes she makes me sadder than I think I can survive.

Sometimes I think I'm exactly the father she needs.

And sometimes, when she's trying so hard to say something that I simply can't understand and for which her device is inadequate, and when she seems frustrated and a little sad and more than a little lonely in a world of concerned grownups and little kids who are passing her by because she can't answer their questions on the playground, sometimes I feel the weight of this on me, and no amount of personal success or happy happy hopeful thoughts can change that.

Sometimes I see happiness in her eyes. I see wonder sometimes, too. And sometimes I see something else, something sadder and more distant. I recognize that look because I know it from the inside out, too.

Silent partner

Julie
Originally uploaded by Citizen Rob.

It's strange, not having the book to obsess about every night. I mean, don't get me wrong, there's still plenty of work to do. I had the whole thing printed off earlier in the week (I expected to see them feed a tree directly into the printer; 85,000 words eats a lot of paper, apparently) and Julie and I have been reading over it, fixing the typos and bad bad bad bad writing moments (good lord, I had some lazy passages hiding in there). But the pace is different now. The mad dash to the end is over. Now I turn around and look behind me to see what sort of mess I've left behind.

Julie's also reading with an eye towards determining what I've forgotten to mention and, according to her recollection, what I may have gotten wrong. I don't write much about Julie here for the same reason I've mentioned before. She's read some of the things that have been written about me and about Schuyler out there, and she wants no part of it.

Writing the book is trickier, though. She's obviously an equal partner in raising Schuyler and thus as important an element in the book as myself. And yet, how can I write her story? It's not mine to write, and I don't imagine she'd want me speaking for her any more than I'd want anyone else to speak for me. She's got her own story to tell about raising Schuyler. Maybe one day she'll tell it.

Thanks to everyone who sent their congratulations, either in email or the comments for the last entry. There's now a mailing list you can sign up for, specifically for information on things like publication news, promotional events, appearances and book signings. Obviously, it's a little early in the process, so don't expect a hotbed of activity at this point. (Thanks go out to Tracy for all her help in getting the marketing side of this going. I told her that every time I need help with something like this, she seems to magically appear, like some kind of Smart Fairy.)

This list is just for fancy pants book business, by the way. For the usual tomfoolery and smartassitude, you'll have to keep coming here.

A Monster Completed

(Originally posted at SCHUYLER'S MONSTER.)

I finished the manuscript this week, only two days after my own personal deadline and a full month before it's actually due to St. Martin's Press. I think that's pretty impressive on its own merits, but for a historically uninspired foot-dragging slacker like myself, it's nothing short of miraculous.

I'm cleaning it up now and having Julie read through it, partially to help edit but mostly to give me her perspective on how true it feels and whether or not I've left out anything she'd consider important to Schuyler's story. I'm writing this book about my experience; I wouldn't try to tell Julie's story any more than I'd want someone trying to tell mine. But she's the only person who's lived through this whole thing with me, aside from Schuyler, whose literary aspirations are still in the developmental stage.

This is not to say that Schuyler’s not stretching her wordsmith wings. As noted on one of the pages at Prentke-Romich (makers of the Big Box of Words), Schuyler occasionally uses her device to pen such poignant missives as her earliest attempts at both memoir ("When I was little I cry. Now I can swim.") and naturalism ("Rabbit eat carrot. Rabbit eat flower. It can jump. It can hide and run.")

I printed it off to make editing easier, and I was a little daunted at how big it was. 85,000 words doesn't feel like a lot when, you know, you're writing them one at a time. I expect to have this part finished by next week, and then it's off to my editor at SMP, where she will begin the process of deconstructing it and turning it into something akin to an actual book suitable for publication.

I am both thrilled and terrified at the thought of someone actually reading this thing at last. That seems to be a recurring theme in this process.

I have no idea what happens from this point on, although I've been warned that it's not always pretty. (One writer friend ended his congratulatory email the other day with "Enjoy this moment -- now the disillusionment begins...") But no matter what happens now, do you know what I did? I wrote a book, start to finish. I am now officially swell.

84,885 words

84,885 words
Originally uploaded by Citizen Rob.

I am DONE.

Well, aside from the final edit, which I am hoping will take about a week, maybe two. Then it's off to the publisher, where my editor will read it and decide what parts suck, and then I will de-suckulate it, and then it gets sent back and re-edited and developed by some more smart people, and fact checkers might see if anything smells like James Frey, and then lawyers will read it and tell me that I'll get sued if I call someone "fucknuts", and then I'll have to secure permission for any quoted material I use and also permission to quote Fucknuts in that one chapter, and then I'll try to have a headshot taken that doesn't make me look like Garrison Keillor or Jabba the Hutt, and then designers will come up with some artsy fartsy cover design most likely using one of the seven thousand photographs I've taken of Schuyler, and then galleys will be sent to me for proofreading (maybe I should get someone to help with that part), and there'll be one last request for me to verify information and remove any outright lies, and then I'll be at your local Barnes & Noble, leering at the 18 year-old booksellers and signing my big fancy pants book, by golly.

Anyway. I'm getting drunk now.

Happy New Year

Mother Daughter
Originally uploaded by Citizen Rob.

A funny thing happened over the weekend, the one where I was supposed to finish my book.

I spent it with Julie and Schuyler and my best friend from high school and his family instead. Funny how life steps in and insists on being lived sometimes.

There have been years in the past where at the end I was like, "Oh, fuck THAT." But 2006 was such a crazy mixed bag that I have no idea how to feel, really. I started the year in a crap job at a troubled (and now closed) Monolith store, and I ended it in a very cool job as the public relations guy for a large university's architecture school in which I only occasionally have to pretend I know anything about architecture. (Hint: It's mostly buildings.) I had some relationships sputter to a conclusion and others spark and flicker to life. I began the year with diabetes and ended with a book deal.

I think, in the balance, 2006 turned out pretty well in the end.

Through it all, Schuyler endures and flourishes. Must faster than I am ready to accept, she's growing into a tall, pretty little girl. She gets better and better on the Big Box of Words and is keeping up in her mainstream classes, with neurotypical kids her age. If the first seven years of her life made for an interesting book subject, the next few years look like they might be refreshingly boring to write about. At least until she's a teenager, and then all bets are off. The thought of it makes me want to go finish whatever beer is left in the fridge from last night, assuming we actually left any.

So yeah.

I hope every one of you just kicked off the best year of your life so far. 2007's definitely got a lot of promise going in.

Now if you'll excuse me, I have some work to do. See you on the other side.

Crybaby

It's crunch week here at the Fancy Pants Book Boy Blog. I am three chapters away from completion, and while I'm obviously cutting it close in my "finished by the end of the year" goal, I also don't work this week (thanks, academia!) so it might just happen. Depends on whether or not I feel like engaging in the loserly extravagance known as sleep.

Christmas around here was quiet but fun. We're actually planning a sort of Christmas 2.0 for after my book advance check arrives. It's not a particularly large advance, and I'm not going to complain about it because it's a pretty swell problem to have, the whole "when am I going to get paid for the book I haven't actually given my publisher yet but which they're going to publish for me and make all my dweams come twue" thing. Before I got the book deal, if I'd read someone bitching about their advance not being paid fast enough for their selfish soul, I'd be sticking pins in a doll pretty quickly.

Still. You know how it is.

So three chapters to go, and then do you know what I'm going to do, before I edit and send it in? Can you guess?

That's right. I'm getting drunk. Worst case scenario, I'll pick up some booze when I start knocking over liquor stores.

Like any other kid at Christmas

Schuyler & Santa, 2006
Originally uploaded by Citizen Rob.

Schuyler has always had a strong association with Christmas, being born four days before. It's no coincidence that her middle name is Noelle.

I took her to see Santa today.

She prepared for her audience with The Man all morning, practicing what she was going to say over and over. When it was finally her turn, she uncharacteristically hesitated for a moment, and then jumped up in his lap and told him her name, using the Big Box of Words, and what she wanted for Christmas. ("I want earrings and necklace and bracelet and ring." Apparently it's Schuyler's year for bling.) When it came time for the photo, she handed me her device impatiently. It was a scene that at a glance looked very much the same as any other kid visiting Santa.

I could tell it was different for him, though. The other kids were rushed through pretty quickly, but Santa took his time with Schuyler. He asked her questions, which she answered on the BBoW, and he spoke to her, softly so that only she could hear what he said. She listened intently and nodded solemnly every so often, seemingly very aware of the importance of her audience with Santa. Her eyes shone and she watched his face with reverence the whole time. It's often hard to know what exactly is going through her mind, but one thing was very clear today. Schuyler believes.

They took the photo and then Santa gave her a long hug, closing his eyes for just a moment. After Schuyler hopped down, I saw him push up his glasses and quickly wipe his eyes before turning and motioning for the next kid. As we walked away, I saw him turn and look at her, watching her thoughtfully.

Schuyler made Santa believe. I know how he must have felt.

Quality of Life

Schuyler at sunset
Originally uploaded by Citizen Rob.

I was driving home today and listening to NPR, and a story came on about a young woman in Oklahoma named Misty Cargill who suffers from mild intellectual disability and abnormally small kidneys.

Misty Cargill needs a kidney transplant.

Out of 69,000 Americans on the waiting list for a kidney transplant, only about 16,000 will receive one this year. No one knows who will be next to get a kidney, but Misty knows it won't be her. She knows because she can't get on the list.

Because of her mental disability.

Misty Cargill was rejected from the list, despite the fact that she meets all the criteria for transplant. She's within the correct age and weight range, and aside from the fact that she will need a kidney very soon, she is otherwise in good health. She has Medicaid and is therefore able to pay for the operation and the follow-up anti-rejection medications. A patient must be capable of telling their doctors how they feel and of taking the medications that will prevent organ rejection. Cargill can do so; she's employed and lives in an assisted living community, where she lives mostly independently but with medical supervision.

But even though the state of Oklahoma considers Misty competent to make her own decisions, the Oklahoma University Medical Center transplant center rejected her referral on the grounds that she might not have the mental capacity to give informed consent to have the operation. They even went so far as to claim that her own doctors declared her incompetent to give informed consent, a claim denied by her personal physician and her kidney doctor, who say that she is a good candidate for transplant and could die without it.

In the story, an expert on developmental disabilities at Ohio State, Steven Reiss, said exactly what I was thinking: doctors appear to be making decisions based not on medical concerns, but a discriminatory "quality of life" judgment.

"There's thinking out there that some people's lives are more valuable than others," he said. "It's very hard to keep that thinking totally out of the transplant process."

One of the tests we have not put Schuyler through is a cognitive evaluation, an IQ test. There are plenty of good reasons not to and not really any compelling reasons to do so. She's receiving the services she needs in her school, above and beyond, in fact, so a test showing some sort of diminished cognitive capacity isn't going to help her get more help. More importantly, an IQ test administered on a non-verbal subject is extremely subjective and dependent upon the independent interpretive judgment of the test administrator. When we saw Dr. Dobyns in Chicago, he warned that such a test should only be administered by a qualified pediatric psychiatrist, and even then we should take the test results with a grain of salt.

I have no idea how profoundly Schuyler's cognitive abilities are affected by her monster, although my gut feeling (and those of the medical evaluators who have seen her before) is that her impairment is mild and probably due more to her communications difficulty and developmental delay than to her brain malformation.

Today, it suddenly became clear once again why we were correct not to have such a test administered to Schuyler, and why we likely never will. Today, I heard the story of Misty Cargill, a young woman who goes to a job and has a boyfriend who takes her to the movies and who bowls in a league and who can't get a life-saving procedure because someone somewhere has decided that she's retarded, and retards don't deserve to live as much as the rest of us. Today, I remembered the emails I have gotten, not many but a few, suggesting that Schuyler's class is a drain on the resources of the public schools, and that she and the other members of her box class should be institutionalized (and marginalized), not mainstreamed.

It's a hard, rough, shitty world for broken people. Don't you ever doubt that, not for a goddamned second.

(UPDATE: Misty died in 2012, never having received her transplant.)