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.)

That was a quick seven years...

Happy birthday, Monster Girl.

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.

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.

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.

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.

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.

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.

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

The crash survivior and the Talent
Originally uploaded by Citizen Rob.

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.

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.

It beats the alternative.

Just don't call me "distinguished".
Originally uploaded by Citizen Rob.

Anyone who has read me for a while knows that I don't generally love having birthdays. And tomorrow's not one that I've exactly looked forward to over the years. Tomorrow I turn thirty-nine.

Well. Yeah. When I just come out and say it like that, it sounds even worse.

This year, however, I find that my feelings about my birthday, usually pretty straightforward ("oh, fuck THIS"), are a little more complicated. While I'm not in love with turning thirty-nine and particularly not thrilled about being a short year away from, you know, thirty-ten, I'm not looking for something sharp or a bus to step in front of, either.

So yeah, I see that as a step up.

If I stop and take stock of my life the day before my birthday, I find that it's not a bad report at all.

I'm developing new relationships and understanding my old ones and have a pretty good sense of the people in my life and what I mean (and sometimes don't mean) to them. At thirty-nine, I am developing a sense of self that has at its core my own understanding of who I am rather than someone else's. I'm not there yet (does anyone ever actually get there?), but I feel closer than I ever have before.

At thirty-nine, I am feeling healthier than I have in a long time, aside from my little kidney misadventure last month. My diabetes is under control, enough so that I've stopped wearing my medic alert tag unless I'm traveling and I don't really think about the Beedies all that much. I take my meds, I eat reasonably intelligently and I spend an hour a day on the treadmill. I'm losing weight, my eyesight has returned to its normal badness, and I can feel my feet again. Everything works the way it's supposed to, and I'm not Jabba the Hutt anymore.

As far as that goes, I don't see it when I look in the mirror, but I've lost enough weight that when I went shopping yesterday for some clothes for New York City, I found that I have gone down ANOTHER size. This puts me at the same size jeans I wore in high school. Let me say that again. High school. And I honestly don't remember the last time I wore a shirts in a large, but I suspect I was still receiving lunch money at the time.

I will turn thirty-nine as something I always wanted to be but never quite was: an author. The word still feels snotty and pretentious, but like your first pair of boots, the more I legitimately wear it, the more comfortable it feels. The day I mailed off my contract, I talked to my agent. She asked me if I planned to write more books, and when I said yes, she was pleased.

"I think you've got more books to write, Robert," she said in her unmistakable accent, that hard-to-nail-down Manhattan cadence, two parts vaguely British Empire and one part old Cary Grant movies. "Your book works because you are a talented writer. When you're in New York, I'd like to talk to you about a few ideas."

In two weeks, I'll be in New York City to talk about making the transition from online writer (okay, fine, blogger) to author, and the next day, I will walk into the Flatiron Building and the offices of St. Martin's Press, and I'll belong there. Thirty-nine is the year that becomes real.

Most of all, however, I turn thirty-nine with the unfamiliar but exhilarating feeling that Schuyler is going to be okay. In Austin, she was treated like a pretty little tragedy, one who would never be capable of using her Big Box of Words and who was expected to be a ward of the public school system until she was old enough to go home and live out her days with her heartbroken and aging parents.

Now Schuyler is actually learning in school, much of her time spent with mainstream students in a regular first grade classroom. She's got teachers and support people who talk about what she'll have to do to graduate high school and go on to college, not as "wouldn't that be grand?" pipe dreams but with the same level of expectation as any neuro-typical student. I turn thirty-nine with a child who is still strange and still broken, but who is also finding her own way and remains the most extraordinary person I have ever known.

So yeah, thirty-nine. I'm not thrilled about the idea, but I'm okay with it.

Not ready to talk about thirty-ten just yet, though. Baby steps.

My pants, they are quite fancy.

AUTHOR:
Originally uploaded by Citizen Rob.

It's been three months of contract negotiations and working out all the tiny details, a lengthy process with any publisher but especially tricky with a large house like St. Martin's Press, with their in-house divisions for things like audio books and overseas editions.

(And merchandising and game rights, oddly enough, although both remain sadly blocked out of my agreement. That's too bad; I was looking forward to my action figure, and Schuyler's Monster for Playstation 3 would have been extreme.)

Today, I am holding the first tangible result of all my agent's hard work.

Friends, I have my contract. Eleven pages.

I'm sure I'll write more about this over at the book blog later tonight, but I just wanted to mention the moment here, with all of you. (Even the assmonkeys.) Many of you have been with me from the very beginning, back before Schuyler was even born, and I know a lot of your hearts broke when she was diagnosed, too. Every time she does something great, I can feel how much pride is out there, among people who will probably never even meet her. When she stumbles, I sense all the invisible hands reaching out to catch her.

Incidentally, there's not much to say about Schuyler at the moment. She's doing well in school, keeping up with all the jabbering mainstream kids in her class and getting excited about the holidays and her birthday. Perhaps it's tempting Fate by saying this (although really, by now it should be pretty clear that Fate can kiss my ass), but Schuyler may have entered a somewhat boring part of her life, at least until she takes a copy of the book to school sometime in the next year or two and uses it to smack some pretty blonde cheerleader in the head.

I'm taking her to The Nutcracker on Friday. There's your Schuyler news. I love classical music but have always been strangely cool towards ballet, so it'll be interesting to see who becomes a twitchy freak first, Schuyler or me.

Things are moving inexorably toward the day when Schuyler's life changes because of this book. It's impossible not to consider that, and we have. It was one of the first conversations Julie and I had about the book. We decided, and still believe, that the concerns (real and imagined) are outweighed by the potential benefits for Schuyler and all the other kids out there with their own particularly monsters, and even more so for other parents who find themselves in their own world of "WTF?" when their lives get turned upside down.

I've mentioned the monkey paw aspects of this book before, but today, I'm going to allow myself to set that aside and enjoy the moment. Just a moment, and then back to the work of finishing the book, and the very real work of being Schuyler's father.

Today I'm going to enjoy looking at that last page of my contract, at the line with my signature on it, beside the word "Author". Today, I don't feel like a fraud when I read that word. And that, my friends, makes this a very, very good day.

Rob Rocks the Peg

(Originally posted at SCHUYLER'S MONSTER.)

An observant blog reader spotted this in the Sunday edition of the Winnipeg Free Press:

Blogger Robert Rummel-Hudson has landed a book deal based on his blog, 'Beloved Monster and Me' (belovedmonsterandme.blogspot.com), a chronicle of life with his daughter, now seven, who has an extremely rare neurological disorder. His memoir, 'Schuyler's Monster', will be published by St. Martin's Press in the Winter of 2008, Publisher's Weekly reports.

It’s not really news or anything, I just thought it was fun that I popped up in Winnipeg, just sort of at random.

I’m a news item, by golly, and not in that “He was always such a quiet neighbor...” sort of way. So much for my high school guidance counselor’s powers of prognostication...

Better

Yes. No.
Originally uploaded by Citizen Rob.

Schuyler and I bought these Chuck Taylors over the weekend. Think of it. Shoes with something to say, worn by a little girl who can't say a word. That's some fated footwear right there.

There's one good thing about depression, a great thing, actually, even if it's a little manic. When it finally lifts, you feel fucking awesome, like nothing can beat you. You may not suddenly have all the answers, but you feel like you do, and that's not nothing.

I'm sure there's a chemical element to the passive of a depressive episode. I'm not sure I care so much. It's the other reasons for improvement that interest me more. There's clarity of thought and good advice of smart friends who listen and care, and improved health, too.

And exercise. I've started hitting the treadmill at my apartment complex's workout room for an hour a day, walking at 3.5 mph. Not exactly tearing it up, but compared to the ass-to-couch regimen I've been following, it's a start.

Mostly, however, it involves reaching the point where you're just not going to be down anymore. That's how it works for me. I never know exactly why I go into a down period, other than identifying the things that trigger it on the surface, and likewise I have no idea exactly what makes my mind arrive at "Oh, fuck this", either.

But I feel better, and stronger, and ready for the next few weeks. I need to finish the book, have a productive and successful New York City trip, and turn thirty-nine without stepping in front of a bus.

I can handle that.

Dreaming

The expression that can move mountains.
Originally uploaded by Citizen Rob.

Like many nights these days, I was up pretty late writing last night, finally going to bed around 2am. I woke up not long after and rolled over to discover Schuyler lying between Julie and me, watching me quietly in the dark with wide eyes. She smiled sadly when she saw me open my eyes, like she was safe at last. I knew then that she'd had a nightmare.

Schuyler's bad dreams mystify me, along with her good ones, too, I suppose. One day she'll be proficient enough on her device to describe them to us, but until then, they are lost to everyone but her. Schuyler's dreams create a world that may sometimes frighten her but is nevertheless entirely her own. That's true in some way for all of us, I guess, but for her, the things that she sees and experiences in her sleep defy explanation. I wish I could share in more of Schuyler's experiences, and her dreams most of all.

Dreams are complicated for me. In general, I am not a very New Age kind of a guy. That's probably not a huge surprise. And yet.

I won't get too moonbaby on you. It's not that I think I can predict the future or anything, because while I've had dreams that might be described as prescient, I also understand that dreams like that are most likely the subconscious working out things that the conscious mind is still trying to figure out. I had a long paragraph about how something I dreamed came true recently in a way that suggested a weird connection with Schuyler, but when I went back and read it, all I could think was "Good lord, what a load."

So I'll spare you the Crossing Over crazy talk and simply say that I have begun to listen more closely to my dreams. I wish I understood them better. And I wish I knew more about Schuyler's. I feel like there are answers there, for her and for me.

I also wish she didn't have to experience hers alone. But then, I wish that about a lot of things that I can't help her with.

Hootenanny

Yo.
Originally uploaded by Citizen Rob.

There's not much new to report about Schuyler other than the completely uninteresting details of the cold that she's enduring (two words to strike fear into your heart: green elevens) and the (probably inappropriate) high black boots she wants me to get for her. (She's currently wearing a camouflage half-jacket and grapey purple hair, so I suspect we all know how this is going to end.)

In the interest of continued shameless self-promotion, let's take a look at the newly-expanded list of speakers for the MediaBistro "Blogger to Author" panel in December:

-----

-- Jessica Cutler, author of The Washingtonienne: A Novel (Hyperion), a book loosely based on her blog about her raunchy exploits as a congressional staff assistant

-- Maxwell Gillingham-Ryan, author of Apartment Therapy (Bantam), and New York editor and co-founder of Apartment Therapy, the design blog the New York Times called "quietly addicting"

-- Kate Lee, literary agent at ICM, whose client list includes prominent bloggers, reporters, editors, publishers, novelists, and memoirists

-- Laura Mazer, Managing Editor at Seal Press (an imprint of Avalon), which has published numerous titles that began as blogs

-- Robert Rummel-Hudson, author of the forthcoming memoir Schuyler's Monster (St. Martins Press) which began as an online journal about how his life was transformed when his daughter Schuyler was diagnosed with an extremely rare neurological disorder that left her unable to talk

-- Rachel Kramer Bussel, moderator, Senior Editor at Penthouse Variations, writes The Village Voice's Lusty Lady column. She's edited 13 erotic anthologies and her first novel, Everything But..., will be published by Bantam in 2008.

-----

I think it looks like an awesome mix of writers and publishing professionals, even though I think making a parenting memoir interesting in the context of everything else on the program is going to be, and I think I'm putting this charitably, challenging. I exchanged very nice email with moderator Rachel Kramer Bussel and I think this is going to be a fun and well-run panel. The end-all hootenanny of hootenannies!

I've seen photos of the other participants, and yeah, everyone's all young and good looking and hip. Well, I should say, everyone else. I clearly have some work to do. ("Hey, look at that. I had no idea Ernest Borgnine had a blog!")

If my book advance pays out in time, I do believe I may just do something that I don't believe I have ever done in my life, or at least not since I was taller than four feet high and able to choose my own clothes. I think I might buy a suit. An actual, fancy pants snazzy suit.

You know, I should get a semi-stylish haircut, too. And yeah, I know. The beard. I know.

An Important Message to Democrats, from an Independent voter and swell guy

Dear Democratic Party,

Please don't fuck this up.

Lovingly,
The Rob

Morning

S
Originally uploaded by Citizen Rob.

I just walked in from putting Schuyler on the bus. This is almost always the worst part of the day.

About half an hour ago, I woke from a recurring dream, a variation on one that I've had ever since Schuyler's diagnosis in the summer of 2003. It's the dream where she talks to me. I hate the dream, even though I also love it a little. I hate how I feel when I wake up and Schuyler's reality hits me all over again, dissipating the dream like smoke.

This time it was a little different. I was holding a baby girl -- our baby, the second child we were never able to have -- and I was wondering where Schuyler was and how she was doing, in that way that I usually think about her during the day, from the moment I put her on the bus and give her over to the world.

Just then, in my dream, she came up behind me and put her hand on my shoulder, and she said the same thing she always does. "It's going to be okay," she said. And then she asked where her beanbag chair was.

Julie woke me in the middle of the dream so I could put Schuyler on the bus after she left for work. I found Schuyler on the couch, getting her morning Zaboomafoo fix. I asked her how she was doing. She smiled and silently gave me a thumbs up.

It's going to be okay. I still hurt for her, though.

Halloween Confession

Wicked Witch of the Chucks
Originally uploaded by Citizen Rob.

Yesterday morning, after we'd gotten ready for school but before the bus arrived, Schuyler and I were sitting on the couch, watching television. She was eating her breakfast of apple slices and generally absorbed in a high energy show about animals, hosted by a lemur puppet whose name I am entirely too lazy to look up how to spell. Parents, you know the one.

I looked over at her and asked, "Are you excited about Halloween?"

"Yeah," she said, not looking away from her show.

"Are you looking forward to being a witch?"

"Uh huh," she answered, clearly a little irritated that I was still bothering her while she was trying to watch baby animals on tv.

"Tell me, Schuyler, are you a good witch or a bad witch?"

She sighed and pulled her device over to her side. She quickly punched a few buttons and then hit the speak button, turning back to her television show without so much as a glance as it spoke for her in its calm computer voice.

"BAD."

Well. There you go.

Come see Mister Fancy Pants

NYC
Originally uploaded by Citizen Rob.

Those of you living in the New York City area might be wondering to yourselves, "Say, I wonder what I'm going to be doing on the evening of Monday, December 11? Surely there's some way I can spend, say, twenty bucks or so and be both informed and amused!"

From Blogger to Author: How Bloggers Got Book Deals, and What Happened Next
Monday, December 11, 7-9 pm
Small Press Center
20 West 44th Street
New York, NY 10036
212-764-7021

I had no idea that Jessica "Washingtonienne" Cutler is going to be one of the speakers. I'm going to have to try extra hard to be interesting now. "Yeah yeah yeah, crazy sexual exploits in the halls of power are interesting, I suppose, but what we REALLY want to hear about is the Big Box of Words!"

Don't worry. I'll make stuff up if I have to. For twenty bucks, you deserve some zazz.

On second thought...

First of all, I want to thank everyone who has been concerned about my health. I really appreciate it.

I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.

For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.

Wiccan nugget

"She turned me into a newt."
Originally uploaded by Citizen Rob.

First off, no, I haven't had my little pebble baby yet. And everything you've heard about how painful kidney stones can be? Um, it's all true. Fuck a duck, this hurts.

But I really don't want to go on about that, mostly because "it hurts" is about the most illuminating thing I have to share. It may be an understatement on the same scale as "Hitler was mean", but really, it hurts. Not much more to say about it.

We just finished the annual ritual of deciding what Schuyler is going to be for Halloween, and as you can see, she settled on being a witch again. Unlike last year's punky, sassy and yeah, kind of slutty Spider Witch, however, this year she has opted for the more traditional, Wizard of Oz-ish Old Skool Witch.

I suppose her costume might be even more borderline offensive than last year, both to Religious Conservatives (ie. kooks) who don't dig the supernatural ("Thou shalt not suffer a witch to live"; thanks for nothing, silly Bible) and would prefer Barbie or a little miniature Ann Coulter to come to their door, and also to Wiccans (ie. you know, actual witches) who probably don't love the idea of the traditional negative cackling witch with the broom, eating up Hansel ünd Gretel, etc.

But the costume was Schuyler's choice, and it didn't involve a character from a television show or a corporate product endorsement. Besides, we're not going to turn her green or give her a wart. She's actually a very cute little witch, albeit perhaps a slightly wicked one. She looks more Amish than evil.

The route to this costume was, like last year, a circuitous one. For months she's been saying that she wanted to be a mermaid for Halloween, but when we started looking for costumes, the ones we found looked ridiculously crappy or Jon Benet-whoreish. Leave it to the Disney store to have the only halfway decent-looking mermaid costume, and they wanted... (wait for it, wait for it...) EIGHTY ACTUAL AMERICAN REAL DOLLARS for it, for no other apparent reason than they just released The Little Mermaid on DVD and can jack up the price as a result of all the little girls with Ariel on the brain. I hate you, Disney. I hate you more than ever before, and I hated you pretty hardcore before this.

We then found an awesome pirate costume and were both set to go as matching pirates. (Julie is insisting on going as a soldier, for reasons that escape me but have something to do with already having the costume, and I think I'm going to take a "don't ask, don't tell" approach to that particular acquisition of hers.) Something happened inside the mysterious head of Schuyler, however, and suddenly she didn't want to be a pirate anymore. With only minutes to spare before exhausting our last molecules of patience, she suddenly saw this costume and decided that she wanted to be a witch, of the "Wicked Witch of the Pick a Direction" variety, and that was that. Being Schuyler, she opted to bypass the traditional twiggy broom for the stylish purple model and the purple striped tights, and of course the addition of her traditional pink Chuck Taylors finished the look.

Finished, of course, except for the hair. We did that tonight, with a color that she picked out months ago and which was just patiently waiting in the bathroom cupboard for the right moment. Tonight was the night of the Great Purpling, both for Schuyler's hair and, for a while, her skin, my fingernails and most of the tile in our bathroom. Everything's back to its preferred color now except for my fingernails, which are now zombie-purple. (Say, there's an idea for a costume. It would fit well with the effects of the Vicodin I'm taking.)

You'll be especially amused to know that in order to appease Schuyler even further, I finally gave in to the request that she has made every time we color her hair. I tried a little on myself, purpling up a big strand in the front. Sadly, my hair is so dark that it is almost invisible. You can be the judge of whether or not that's really bad news; I do have a job, after all, although it is in academia where that sort of thing is probably expected from time to time.

Halloween is a strange day for Schuyler, and one that she and I both dig more than I can explain. Neither of us can really eat very much of the candy, after all. Her dysphagia makes hard candy dangerous for her to eat, and of course now I've got the Beedies pissing on all my Halloween fun.

But we throw ourselves into Halloween just the same. I suspect that it has to do with the fact that for that one day, she's not a kid with a monster, strange and alone with her Martian language and her computerized voice. On Halloween, she's supposed to be a weird kid, but not THE weird kid just this once. It's a day when she can lose herself in being a witch and not have to be whatever it is that the world sees her as the rest of the time. Sweet and punky yet weird and broken, whatever. She gets to toss that aside for the day and be a witch. "Give me some candy or I'll turn you into a fly."

Halloween is her day to just be a kid.

As for me, now that we've strayed from the pirate idea, I'm at a loss for a matching costume. I'd love to go as her flying monkey, but I don't think I'm ambitious enough to make that happen.

Audience participation

Back in the ER
Originally uploaded by Citizen Rob.

Come on, everyone, chant it with me.

Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!

I have to say, I'm just about all funned out with the kidney thing.

Rock star

Gimp tag redux
Originally uploaded by Citizen Rob.

So last night I got this massive pain in my left kidney, like I had been kicked hard, and just this once, I was smart enough not to ignore it. I had Julie take me to the hospital, and sure enough, it was a kidney stone.

In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!

A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.

When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.

"Um, did you eat a necklace?"

Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.

So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.

The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.

"Yeah, at least you got a prize at the end," I said.

As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.

Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.

Well, I'm glad someone had fun.

Stalking for Dummies

Just wanted to take a moment to let everyone know that I will be crawling out of my little writing cave for two public events in the coming month or two.

On November 2, I will be present for the opening of an art exhibit in Austin called Celebrated Skin. The topic of the exhibit is tattoo art, and my contribution will be my right arm, which I presume will be up on the wall. (A photo of my arm, rather; I love art, but I'm not game for an amputation just yet.) Stop by and watch me pretend to know what the hell I'm talking about.

On December 11 (and a day or two after, I imagine), I will be in New York City for a Media Bistro panel. I don't have any details right now, although I don't think it's going to be an "open to the public" thing, but I'll let you know when I have more information. If nothing else, it might be fun to put together some kind of small gathering while I'm in town.

Stalkers, sharpen your knives and make your plans.

Getting schooled, and good

Monster
Originally uploaded by Citizen Rob.

I just finished the chapter describing Schuyler's condition (the beginning paragraphs of which inspired my last entry), and in the process, I learned a few things. Part of that came from research I did, both online and with the help of Dana, who remains one of my best friends even from Connecticut. I also wrote to the two top experts on Schuyler's disorder: Dr. William Dobyns, who saw Schuyler in Chicago back in January 2005, and the Christopher Walsh Laboratory at Harvard. They both wrote me back with a ton of information, much of which appears to be in English but is clearly written for someone smarter than myself.

I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.

When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.

I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.

This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.

Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.

Found Wisdom

Schuyler
Originally uploaded by Citizen Rob.

I ran across this while researching something for my book, and it resonated so strongly with me that I wanted to share it.

I don't always think people understand why Schuyler's situation makes me so sad sometimes. I'm not always sure I understand it myself.

-----

Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.

-- The Impact of Childhood Disability: The Parent's Struggle, by Ken Moses, Ph.D.

Where she lives

Ballerina artist
Originally uploaded by Citizen Rob.

Typically, when I write a blog entry, I start with the topic and go from there. When I'm done writing, I'll go find a photo that will go with it, or I'll take one if I need one. Or perhaps I'll steal one from someone else's page, maybe yours! The point is, usually the photo comes last, as an accompaniment to the writing.

This morning as I was leaving for work, Schuyler was drawing with her big markers, wearing her little ballerina outfit that she inexplicably puts on when she's playing around the apartment. I have no idea what the appeal might be, particularly since she doesn't really dance around much when she wears it. Anyway, she was drawing quietly with her markers, and I thought it was cute so I took a few photos on my way out the door.

It wasn't until later, after I loaded the photos into my computer, that I saw what I had captured, and knew that I wanted to write about it.

Anyone who has ever met Schuyler and spent any time with her knows how sociable she is. She is outgoing and friendly and not one bit shy. It's almost scary sometimes, how warm and happy and turned-up-to-eleven she can be.

But Schuyler lives most of her life inside her head. It's not so pervasive as it was when she was younger. She can make herself more clearly understood now, she has options she didn't have before. But she only makes those connections when it suits her, and much of the time, it doesn't.

Strangely, this is a side of Schuyler that I understand completely. When she disappears inside her own head like she's doing in that photo, I get it. It's not because of her monster, not entirely. I think she retreats there because it's a place where she makes sense. Schuyler is a social creature, but she is also a very internal one, a person who can be totally alone in a crowded room. I watch her withdraw, not out of sadness or anger or stress, but simply because that's where she lives, inside herself. And I get it, because it's where I live, too.

Tomorrow, she and I will spend the day at home together, and I know that like on most days we have, we'll spend part of it just sitting together. She'll draw or play with her dolls, making them speak to each other in her strange moonman language (she never uses her device to make them talk; she tried that early on, making her dinosaurs say "I love you" to each other, but that didn't last) while I write. We'll do that for hours, and we'll never say a word, and it'll be perfect.

I guess I like that shot because I take a lot of photos of Schuyler that show the vibrant part of her personality, but I feel like a real photographer when I take one that shows her where she lives, inside that strange and broken and beautiful head.

The end of days are nigh. Maybe. Nighish.

Look out for the Debbil!
Originally uploaded by Citizen Rob.

For those of you who might be religious in nature, I have two things to report that may nor may not signal the coming Apocalypse.

Julie is thinking of getting a PC laptop. And I think we're getting cell phones today.

Before you start frog-proofing your rain gutters, there are good reasons for both. The phone was a long time coming, but getting stuck on the interstate behind a traffic accident for three hours with Schuyler in the car and being unable to call anyone to tell them that we were running late sort of sealed the deal.

I wrote about this more over at my book blog, but the other reason for getting a phone is that it looks like Julie is going to help with publicity for my book, at the very least augmenting whatever publicist I might get assigned by St. Martin's Press. SMP publishes and promotes about 700 titles a year; I'll be trying to sell just one book.

Julie's got experience; it's what she does for a living, after all. Also, she's got a vested interest in the success of my book. And I assume her rates are affordable. Aside from the laptop.

So unless Cingular comes to their financial senses before they deliver our phones, it looks like I'll be joining the rest of you in this Twenty-first century, already in progress.

Schuyler has been on what they call "Fall Break", a free week that I never had when I was in school. She had something of a rough weekend, including a three and a half hour drive that turned into almost eight hours thanks to Dallas traffic and Austin road work and a bout with food poisoning. The fewer details shared about that experience, the better.

But through it all, she stayed mostly happy. Even after getting horribly sick, she would simply wash her face, brush her teeth and be back to her normal self. Her resilience never fails to amaze me. I wish I had her ability to spring back from disappointment. In the words of the Eels song, "I'm tired of the old shit. Let the new shit begin."