December 27, 2006

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.

December 24, 2006

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.

December 22, 2006

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 mental retardation 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.

December 20, 2006

As good as a paternity test


Don't eat that.
Originally uploaded by Citizen Rob.
We were sitting for a delightful dinner at Chipotle last night. Schuyler was busily devouring her quesadillas and had left her device sitting on the table. I slid it over in front of me, pulled up the alphabet page and started typing, and then pushed it back over in front of her and pushed the speech field. It spoke in her voice.

"Schuyler eats boogers."

She laughed and pushed a few quick buttons.

"No."

Then she got busy, putting together a sentence from a variety of areas on the device. When she was finished, she slid the device across the table and hit the speech field, chuckling to herself quietly.

"Daddy eats bugs."

Season of Change


Schuyler and Tiny Lulu
Originally uploaded by Citizen Rob.
And then, things are back the way they were before. Except of course, not at all.

We met with Schuyler's team yesterday, specifically addressing her dysphagia issues. I don't write much about the secondary effects of her Bilateral Perisylvan Polymicrogyria, but the other major issue besides her speech problem involves her swallowing and the muscles in her face. It's the thing that causes her to drool, and it makes for occasional difficulties when she eats.

It doesn't come up often; we watch what she eats pretty carefully, and she never dines alone. A few weeks ago, however, she had a choking incident at school, and since then there's been a lot of talk about a special diet and pureeing all her food (an idea floated last year by an overenthusiastic therapist) and generally lots of scary talk. Schuyler received an independent evaluation from a dysphagia expert, and yesterday we got the report.

It wasn't bad at all. We're making a few adjustments to what Schuyler's going to eat and how it'll be presented to her, but none of the meatloaf milkshakes we were afraid of. The thing I liked the most about the expert was her commitment to a solution that will allow Schuyler to function in a way that won't make her stand out in her peer group. She has a commitment to improving Schuyler's life, not just to help her stay healthy but also to help her grow into a normal little girl trying to find her way in the unforgiving "Lord of the Flies" world of little kids. You couldn't pay me enough to relive those days, and I wasn't even broken at that age.

It's funny, because life has changed so much lately, and it's changing more every day. There's another song by Eels, with the line "I'm tired of the old shit, let the new shit begin." But for Schuyler, it's still the smallest things that amaze her, not the big changes. Old faces disappear from her life as they do from mine, and new ones appear. Schuyler rolls with it far better than I do.

She turns seven tomorrow, an event that she's been excited about for weeks, ever since my birthday started off our family birthday season. It has corresponded to a big event, one that has captivated Schuyler most of all.

A few weeks ago, we found ourselves with puppies (don't ask), and she's been watching them grow with fascination. Even though they're finding homes in a hurry (half-pug and half-Boston Terrier is apparently a popular mix, even if it's really half-housefly and half-Gollum), they've still all come to get names. There's Runtly (obvious reason), Bindi (who had a tiny mark on her forehead, but it seems have to have disappeared, like Madonna's), Brindlefly (nerd joke), Tiny Lulu (again, probably obvious why), and the one who has become attached to me, against my better judgment, Sir Ernest. He's the explorer in the bunch.

They're growing so fast. So is Schuyler, come to think of it. She can't take her eyes off of them, and I can't take mine off of her.

December 17, 2006

Wearing my fancy pants


ESB
Originally uploaded by Citizen Rob.
(Originally posted on Monster Notes.)

I'm writing this on the plane as I return to Texas and real life, from the surreal week I've had in New York City. When I left Dallas four days ago, the entire process of working on this book was an internal one, consisting mostly of late nights spent over my laptop in my living room. My interactions with my agent had taken place entirely in email and over the phone; with my editor at St. Martin's Press, only by email. Even when I got my contract, the reality of this book and what's going to happen hadn't entirely sunk in.

Now it's real.

The MediaBistro event went very well, I thought. The panel was spirited and I don't think I made too big an ass of myself. What I found most interesting from the discussion was how despite the panel's premise (bloggers who were able to transition their online writing to actual book deals), in reality, almost everyone there was successfully pursuing our publishing careers through largely traditional means. Many of the panelists had either begun their blogs after they began the process of being published or had begun their blogs as a part of that process. My book may have grown out of my online writing (although almost none of it is directly used), but my agent was almost entirely unaware of it when she read my proposal, and St. Martin's Press only became aware of the scope of the blog after they taken me on.

Nevertheless, it was also generally agreed that for a writer to be taken seriously in the current marketplace, some sort of online presence was pretty essential, at least for new authors. Editors look at what a writers has online to see how consistent their work is and how committed they seem to be to their craft. If you get Googled and they find some half-assed blog with like four posts from 2002 about your cat, you might not make the big impression you're hoping for. Unless your book is about cats.

After the event, I was able to meet audience members, some of whom had come to the event specifically and a few others who became interested in my work after reading the program notes and hearing me speak. One couple has a child recently diagnosed with autism, and talking to them about taking charge of the process when they don't trust a diagnosis rather than handing over all their trust to doctors. I reminded them that at two points in Schuyler's life (when she was misdiagnosed as PDD-NOS, and when her school in Austin said she wouldn't be capable of using an AAC device), it was NOT trusting what we were told that made the difference for her.

Just having that one conversation on Monday night made me see all over again why I'm doing this.

Meeting my agent and my editor was extraordinary. Sarah Jane Freymann is elegant and refined, and is one of the warmest people I've ever met in my life. I know that this book wasn't easy to sell; it doesn't fit easily into an established genre, and selling it was going to require that just the right agent put it in front of just the right editor. Sarah Jane understood from the beginning what I was trying to do, even better than I did, and in finding Sheila Curry Oakes at St. Martin's Press, she found the same in an editor. I have no illusions about how much I owe them both for believing in this.

When I stepped out of the subway station at 23rd Street and saw the Flatiron Building for the first time, my first reaction was that of a tourist. And then it hit me.

"Holy crap, I have business in that building."

Through it all, Schuyler waits on the other end. She doesn’t care about publishing, or her fancy pants author father. And yet she remains the only reason for any of this, the only reason it matters.

December 10, 2006

Box Friends


Martian Ambassador
Originally uploaded by Citizen Rob.
Schuyler's best friend had a birthday party today.

I've mentioned Sara before, in reference to a photo their teacher took of the two of them sitting in class together, ignoring everyone else and giggling together as they engaged in secret girl talk, BBoW style. Sara is Schuyler's little girl crush, and together they are just heartbreakers, both for what they can't do and for what they can. Also, they're both going to be boykillers one day.

When we walked into the McDonald's Playland for the party, Schuyler and Sara squealed in delight when they saw each other and crashed into each other in a high-speed, full-contact hug. They played together the whole time, once again sort of subbing the rest of the girls, most of whom were neurotypical kids from Sara's Brownie troop.

I have to say, there's something endearing to me about the idea of two broken little girls being snobs to the other, non-disabled kids. If you don't talk with a box, you're not cool enough to run with them. Sorry, but that's just how they roll. Go play with your Bratz dolls instead.

The thing that I thought was the most touching was how Schuyler and Sara talk to each other. They weren't using their devices much at all, but rather spoke in their little Martian languages (which sound remarkably similar to each other) and in a sign language that they seem to have developed together out of ASL but have now made totally their own.

Schuyler has neurotypical friends, but those friendships never seem fair. It makes me crazy, watching good-natured Schuyler end up being someone's plaything because she can't easily talk, but it happens every time and I suppose it's inevitable. Two years ago, it would have seemed unthinkable that Schuyler would one day find a friend, let alone several friends, who live in this world but originate in hers. The Box Class has given her a peer group, and even considering all the good things she's gotten out of this program, that may be the one I value the most.

God, I'm going to miss that little girl next week.

As soon as I get back, Schuyler and I are going to Odessa to see my family and watch my best friend from high school perform as soloist with our old high school band. Manhattan to West Texas in a single day? The culture shock may very well kill me.

December 9, 2006

If my plane crashes, this crappy post will be my legacy to the world.


Hi there.
Originally uploaded by Citizen Rob.
It's the season of birthdays here. Mine was a couple of weeks ago, and yesterday was Julie's. Schuyler's birthday is on the 21st, followed shortly by the Baby Jesus. I'm not telling you what Julie's getting because it's going to be both late and swell, but Schuyler's getting a Hello Kitty digital camera from her father, as a result of her budding interest in photography. I have no idea what Jesus wants. Maybe an iPod.

Tomorrow I leave for New York City, to do the Media Bistro panel, meet my agent and my publisher (at the famously weird Flatiron Building) for the first time, and also to attend an artsy fartsy holiday book party.

The panel itself has generated some strange publicity in the past week. I don't really have much of an opinion about the whole thing. Both sides make some good points and, well, some dumb ones, too. I like the fact, however, that in all the discussions of whose book did better and who's a big player and who isn't, my own name hasn't been mentioned once. I'm the only person involved on this panel who hasn't actually been published yet, so until I open my mouth Monday night, no one knows who I am.

Just this once, there's an online pissing match going on and I'm standing off to the side watching, in happy anonymity. I feel like the fourth Ghostbuster.

December 5, 2006

The Essential Schuyler


Laughter
Originally uploaded by Citizen Rob.
(Written for Monster Notes.)

With less than a week to go before my media panel in New York City, it occurred to me the other day that I don't actually have a very good idea what I'm going to say. That's fine, really. I'm sure I can wing it for the most part. But the obvious question is one that I'm not sure I have an answer for. Not an answer in words, anyway.

"Why am I writing this book? Why did I write about Schuyler in the first place?"

This book isn't the dreary Tragedy Dad book I was afraid it might be when I started. I mean, obviously parts of it are, but I've managed to strike a balance between shaking my angry fists at God and telling fart stories. But if there's a theme to my book (and God, I sure hope there is), it might be best summed up by the blurb on my agent's page (minus the parts about how swell I am):

Schuyler’s Monster is a beautifully written, poignant, humorous, touching and ultimately uplifting memoir of a special needs child who teaches a man full of self-doubt how to be the father she needs. (St Martin’s Press 2008)


From the very beginning, and not just in my writing but in everything I do for Schuyler, even when I fuck up, I do what I do because her story deserves to be told. I may not be able to do everything for her, or even all that much, but I can be her advocate, and I can tell her story.

One thing I don't want this book to be is the story of her disability. I mean, of course that's what it's about; the book isn't named after Schuyler, it's named for the devil in her head. That's the reality of her life, and perhaps cynically, the reality of selling her story to a publisher and to the world.

But if I do my job correctly, the Schuyler you come to know through my writing will be the one you see above. And as difficult as her life might be, now and particularly as she gets older, I still see that Schuyler most of all on any given day of our lives.

When you can laugh like that, talking seems less important somehow.

The Essential Schuyler


Don't eat that.
Originally uploaded by Citizen Rob.
(Originally posted at SCHUYLER'S MONSTER.)

With less than a week to go before my media panel in New York City, it occurred to me the other day that I don't actually have a very good idea what I'm going to say. That's fine, really. I'm sure I can wing it for the most part. But the obvious question is one that I'm not sure I have an answer for. Not an answer in words, anyway.

"Why am I writing this book? Why did I write about Schuyler in the first place?"

This book isn't the dreary Tragedy Dad book I was afraid it might be when I started. I mean, obviously parts of it are, but I've managed to strike a balance between shaking my angry fists at God and telling fart stories. But if there's a theme to my book (and God, I sure hope there is), it might be best summed up by the blurb on my agent's page (minus the parts about how swell I am):

Schuyler’s Monster is a beautifully written, poignant, humorous, touching and ultimately uplifting memoir of a special needs child who teaches a man full of self-doubt how to be the father she needs. (St Martin’s Press 2008)


From the very beginning, and not just in my writing but in everything I do for Schuyler, even when I fuck up, I do what I do because her story deserves to be told. I may not be able to do everything for her, or even all that much, but I can be her advocate, and I can tell her story.

One thing I don't want this book to be is the story of her disability. I mean, of course that's what it's about; the book isn't named after Schuyler, it's named for the devil in her head. That's the reality of her life, and perhaps cynically, the reality of selling her story to a publisher and to the world.

But if I do my job correctly, the Schuyler you come to know through my writing will be the one you see above. And as difficult as her life might be, now and particularly as she gets older, I still see that Schuyler most of all on any given day of our lives.

When you can laugh like that, talking seems less important somehow.

December 3, 2006

Comfort the disturbed.


Disturb the comfortable
Originally uploaded by Citizen Rob.
I put a new sticker on my car, replacing all my snotty political dogma with my equally snotty socialist trouble-making dogma. To be honest, I no longer believe that either party is really concerned with the broken of our society. Both are fighting over the middle class and pandering to the super rich. Neither seem to be giving even the most rudimentary lip service to helping the poor or the displaced in this country.

I feel like I'm back in the Reagan 80s, when the President and Edwin Meese claimed that most street people chose their situation and went to soup kitchens because they didn't want to pay for their meals. At the time the Reagan Administration was making these claims, one third of the homeless were estimated to suffer from serious mental illness, another 25-50% had alcohol or drug abuse problems, and most of the rest were jobless or displaced by the gentrification of the inner cities -- the "new poor".

I don't think things have changed much, and I hear the same "get a job" or "giving to the homeless just perpetuates their situation" arguments now, from both predictable and surprising sources. Where does the solution begin? I don't have an answer. Between the sham of faith based initiatives, scandals within groups like the United Way and political indifference to a class of people who, after all, never vote, who is left to make a difference?

I have no idea how to fix the problem. All I know is that while we as communities and as a government are letting the poor and broken of this country fall through the cracks, as individuals we're touched, we feel, and in doing so, we reach out in our big-hearted and inefficient ways and we try to help. Remember the tsunami, or Katrina? Do you remember how feckless the government responses were but how generous the private citizens of this country showed themselves to be?

Imagine for a moment if our elected officials felt those same impulses of humanity and reached out with the full force of the nation to help those among us who don't vote and don't power the engines of commerce. Imagine the things we could do, not just in this country but also in Africa and Asia. Imagine how the people in parts of the world that hate us would feel when their villages began to get electricity and medicine, and American financial institutions began investing in microeconomics, not for their direct gain but in order to shrink the Third World a little. What if we had a New & Improved World Order, the central tenet of which might be "Let's get the whole world's shit together"?

I don't mean to be all John Lennon (or Karl Marx, for that matter) on you tonight. I know that I'm usually concerned with helping one person, one little girl who has a big problem but who also has a lot of people helping her and lifting her up. But the fact is that there are a lot of people out there who have no one, and they have problems that we can barely even comprehend. I've suffered from depression from time to time, and trust me, I know that a lot of you are frankly not always well in the head, bless your nutty little hearts. What if you had no safety margin? What if the next time you stumble, you lose it all?

I'm not sure why I'm writing this. It's cold outside. Maybe that's it. Just think about it, please.

Maybe I'll go help the poor of Plano. Oh, wait. Shit, I think that's us.

December 2, 2006

"Cue sympathy in 3... 2... 1..."

It is possible to hate the media without being a paranoid conservative.

In fact, this reporter, Emily Lopez, is a reporter for the local Fox News affiliate. But she's not any different from any of the other reporters who have been swarming over our apartment complex for the past few days.

Last night, on the hour, the pond would light up and the freshly made-up and coifed Talents would emerge from their heated news vans to deliver fresh intros to the heartwarming story of the woman who drove into a freezing pond and the hero who rescued her. And her little dog, too.

A few things. First of all, this photo is pretty representative of the attitude of this reporter, as well as the others on the scene. It's not a trick of the moment. Most of the bystanders were pretty nice to the poor woman who drove her car into the water, but unless there was a camera pointing in their direction, the Talents were unconcerned.

Their reporting is pretty sloppy, too. In her report, Lopez reports that the driver hit an icy patch and went into the pond. Really? You don't think perhaps she tried to back out of a parking place in front of the pond and was in drive instead of reverse? And perhaps hit the gas instead of the brake when she realized what was going on? Because she didn't go into the pond from the street, she went in from the parking lot, from an angle perpendicular to the driveway.

No, apparently Emily Lopez, crack reporter, got out of the heated news van, put down her Starbucks cup long enough to use her mad journalism skills to determine that the driver was moving through the parking lot (with a speed bump next to the spot where she went in the water) at such a high rate of speed that when she hit this mysterious icy patch, she lost control of her car, did a hard left, hopped a curb, crossed about twenty feet of ground, crashed into a big rock wall and still had enough momentum to make out about fifteen feet out onto the pond.

Because the other possibility? There's no tragic victim and no tie-in to the Big Scary Winter Storm. Just a person who made a mistake and freaked out. Hard to come up with a 3-D graphic for that.

Slow news day, for the local media and for me, too, come to think of it.

December 1, 2006

No parking.


Trunk
Originally uploaded by Citizen Rob.
So I've mentioned the duckpond right outside my door before, right? It's very nice and serene and peaceful and is in fact one of the nicer things about living here. Julie and I spend a great deal of time out there with Schuyler. Very fancy.

So imagine my surprise today when I stepped outside to see four news helicopters circling overhead and crowds of reporters and onlookers gathering to look into the pond? It's a nice pond and all, and the ducks are swell, but what they were looking at was, well, a Nissan.

Someone had a rough afternoon.

At about 4:14 p.m. Thursday afternoon a woman reportedly lost control of her vehicle and ran into the pond at the Steeplechase Apartments in the 7400 block of Alma in Plano, according to reports from the Plano Fire and Police departments.

The woman frantically dialed 911 as her car slowly sank beneath the frigid water, according to Plano dispatchers. While she was about to be submerged, rescuers dove into the icy pond and got her and her dog out of the car.


Being what kind of gawker, blogger and all-around swell person would I be if I didn't go see for myself?

I can't wait to see how they get it out.