August 30, 2007

Hard to even think about


Schuyler at the airport
Originally uploaded by Citizen Rob.
I'm not going to set this up with a lot of commentary. I will simply say that you should go read this post, maybe the most affecting and poignant blog post I've ever read. It was written by Danielle, a med student whose stuff I've been reading for a while.

I read this last night, and then I sat up thinking about it for a long, long time. I think when you're the parent of a broken child, it's very easy to believe that you'll always be around for them, as if your special work grants you some sort of invulnerability to the shitty, horrible things that can happen in the world. I honestly can't tell you what would happen to Schuyler if something happened to Julie and or, who would take care of her and assume the life's work of fighting her monster with her.

It's a hard conversation for us, because there aren't any easy answers, no family in towns with schools even remotely prepared for someone like Schuyler. The thought of Schuyler suddenly left on her own in this world opens a dark pit in the very center of my body. I think it's something we need to figure out, though, and soon. It's easy to forget just how fast things can happen, or how cruel the world can be.

Father Land

On many of the writer sites I visit, I have been informed that not much goes on in publishing during the month of August. I can believe it.

As I believe I have pissed and whined about before, I don't do well when there's down time. I get frustrated because February feels a million years away, even though it will doubtless pounce on me before I know it, and I want to get all the publicity work done now now now. I do pause every now and then to remember just how fortunate I am to have these fancy pants authorly things to worry about and how many writers out there just said "Fucker..." into their cheap box wine when they read that.

I've been working on the new book to take my mind off everything else, and because apparently I do better when there's a little pressure on me (don't even ask how much of SCHUYLER'S MONSTER I still had left to write when I got the book deal), I made a little web site to serve as a little "git 'er done!" reminder to me and a no doubt breathlessly waiting world.

So go check out the teeny tiny little page for FATHER LAND. I wrote more about this project back on Father's Day, so if you've got ideas, or if you have an interesting father story of your own, by all means, drop me a line. I'd like to have enough material for a proposal by the end of October.

Oh, I'm sorry. Were you hoping for something interesting tonight? Yeah, sorry. I would have liked that, too. C'est la vie. Or "Tough titties", if you're not into the whole Frenchie thing.

August 28, 2007

Homework


Homework
Originally uploaded by Citizen Rob.
Schuyler started school this week. Second grade, believe it or not, which is the appropriate grade level for a neurotypical kid her age. Last week, we visited her school and saw all her teachers and classmates in her Box Class. (Schuyler strutted into the room like a Roman general parading in triumph down the Via Appia.) I also met her new mainstream teacher and saw her little desk in her regular second grade class, the one where she spends a good chunk of every day. Neurotypical kids greeted her excitedly, and if you blinked, you might miss her monster altogether.

We sat down and did her homework just now, and once again I was struck by how far she's come. She learns quickly, although it's still hard to know how much she can and can't read. (Imagine for a moment how you might determine reading ability and comprehension with a non-verbal kid, and you'll quickly see the gulf we deal with every day.) It's clear, however, that she is reading at some level, and learning more every day.

Here's an example of how it works. The sheet we're working on tonight asks some basic questions about likes and experiences and such. I read the question to Schuyler.

"I would like to visit _____."

She answers on the Big Box of Words.

"Jungle."

"I would like to visit this place because _____"

"I want to see animals."

She then writes the answer in the blank, referring to the BBoW screen for spelling if she needs to. Her handwriting is unclear (it probably always will be, as her polymicrogyria seriously hampers her fine motor skills), but it's getting much better. Since she has a new teacher, I transcribe her answers in small letters underneath her writing.

It's pretty basic stuff, no different than any other second grader's homework anywhere. But for us, it's a gift. Not from God, because fuck that guy. It's a gift from Schuyler, and the Big Box of Words, and all the people (including many of you) who have worked so hard to get her to this point.

But mostly Schuyler.

August 26, 2007

Pragmatic monsters


Schuyler works the clay
Originally uploaded by Citizen Rob.
I received an email the other day, a very polite and warm email, to be honest, and like many others, it took issue with my use of the word "broken" in reference to Schuyler. There were a few new twists to the objections this time, which made me sit down and actually think about my take on this issue.

It's a divisive issue, and one I obviously feel strongly about. It's been the cause of many arguments and has damaged at least one friendship, I suspect beyond repair. I've been asked "How can I suggest that Schuyler is broken?" and told that it is appalling that I could believe anything other than she is okay just the way she is.

How do I explain that I find it even more appalling that a parent would blindly accept The Way Things Are without taking up that fight? Those are hard conversations to have. They are doubly hard when the person making the argument does so with courtesy and respect.

The person who wrote to me did just that, and the point she made was something of a new one. I do sincerely appreciate the fact that her email made me stop and formulate in words exactly how I feel about this. I won't quote her whole email, but I'm going to take the liberty of just a bit of it. I think this point is important because it touches on a thought that I've even had myself from time to time.

"My mind keeps asking the questions, 'What if these children aren't 'broken'? What if they are made exactly the way they should be? What if they were made that way to be a benefit to people like you and Julie?' You guys HAVE found your own path, and like you say, some days are good and some are bad, but it seems that the overwhelming consensus of both of you is that your lives are better because Schuyler is in it. So, what if God designed her to be the way she is to benefit you?"

That's an inviting thought, actually. I even suggested something similar to an old friend of mine recently along those lines. I said for many who believe in reincarnation, there are those of us who live the lives we live in order to learn things that we need to learn in our ultimate journey, but (they believe) there are also those who are placed here to teach those lessons to us. It's tempting to think of Schuyler that way, almost like a kind of angel sent to guide the rest of us down some path.

Ultimately, however, I have to reject that idea. Whatever effect Schuyler may have on those of us in her life, the fact remains that she exists in her own right and deserves to live the same life and have the same chances to make it in this rough, mean world as any unbroken child. I've often written about Schuyler's ethereal, almost otherworldly manner, but her reality is decidedly unromantic. If God placed Schuyler on this earth to suffer (and make no mistake about it, trying to communicate wordlessly in a world of the speaking is suffering, no matter how brave a face she puts on it) just so the rest of us could benefit, then what intrinsic value does her life really have? Does anyone deserve to exist simply as a tool, even if it is as a tool of God or Fate or Whatever?

"Schuyler isn't 'broken'. She's just different, and different isn't always a bad thing. Actually, in her case, 'different' means SO MUCH more!"

I understand what this person is trying to say, and I know that a lot of you might agree with her. But Schuyler's reality is not so pollyanna.

Schuyler has an indomitable spirit, and I believe she affects change on some level in everyone who meets her. But she's not just different. Sometimes I hate that word, too, the way it tries to simply place her in another category. Holland instead of sunny Italy, marching to a different drummer, whatever. I feel like the message that "different" sends to her is ten times worse than "broken". I think it tells her that her disability isn't responsible for her struggle and her developmental deficiency, but rather her inability to "think outside the box" or whatever. In my mind, "different" minimizes the very real challenge that she faces (even now, without the added delight of the probable seizures that still loom very large in her future). "Different" suggests that her developmental delay, which is still quite significant, is somehow her fault, as if she simply isn't trying hard enough.

It's easy for people looking in on Schuyler to romanticize her condition, and I know I do a fair amount of it myself. (Calling it her "monster", however, is obviously a writing device, a metaphoric representation of a thing that has no discernible form and which does not have a mind or an intent of its own. Just in case you were wondering if I really do think there's a nasty little green monster living inside her head...) But the reality of Schuyler's polymicrogyria is decidedly unromantic. It's a hard truth that she deals with every day, and one that Julie and I fight along with her, with no tender illusions. Schuyler has no use for gentle words to describe her monster, and she's got no time for them, either. You might disagree with me on this, but I think we would be doing her a disservice if we were to sugarcoat her situation or deny the indisputable obstacles that she faces and which she alone can surmount.

I appreciate the writer and all those who have come before her, as well as those who will continue to speak up. I appreciate their love for Schuyler and for my family, and for the positive way they want, they NEED, to see my daughter. But Schuyler lives in a world harder than the one most of us live in, harder and less certain.

Schuyler is not an instrument of God or a guiding angel for all the lost souls around her, not even my most lost of all those souls. She is a broken little girl who works her ass off every day of her life to fix what is broken and work out her own way through a very unromantic and unforgiving world. When, and not if, she makes it, when she carves out a unique and wonderful and, yes, different place for her life, it will happen because of her hard work and her ability to face the monster, unblinkingly, unafraid and with unsentimental clarity.

So that's how I feel about that.

August 22, 2007

A sad commentary on the state of the internet? Perhaps!

So this is really flattering.

As is this, once I looked up what it actually meant.

But this? That's just sad.

Anyway, thanks to whoever put me up for those. I'll try to keep my hotness in check. It hasn't been a problem for the last 39 years...

August 19, 2007

Art Monster


I've been wanting to show this to everybody for a long time, like a little kid with a barely-contained secret, ever since I got the preliminary sketches. A few months ago, I commissioned Debbie Ridpath Ohi to do an illustration (as part of her Little Nightmares series) for the book site. I received the finished piece today.

(Go check it out in context. I redesigned the book site, and I'm a lot happier with this new look, which seems warmer and more appropriate to the book and its subject. Also check out the new endorsement I received from Neal "Alternadad" Pollack, over on the Press page. Okay, pimpage over...)

I had a pretty specific idea of what I wanted, but what Debbie came up with far exceeded my expectations. Even all the way back in her initial rough sketch, she had Schuyler down perfectly. In her final version, she managed to capture exactly the tone that I hope comes across in the book itself. The illustration has humor and pathos; it's a little dark but full of Schuyler's tough girl spirit.

The monster seems to me to appear both friendly and just a touch menacing, an ever-present companion who nevertheless has a healthy respect for the monster slayer in pink Chucks.

And Schuyler? She looks entirely unconcerned and ever so slightly amused, ready to play with the monster or kick its ass, depending on the need. Either way, she's content with the outcome.

Thank you, Debbie.

August 17, 2007

So much for that.


DONE.
Originally uploaded by Citizen Rob.
I would like to officially record the following:

At exactly 1:27am on August 17, 2007, exactly one day shy of a year since I got the book deal for SCHUYLER'S MONSTER, with a farting pug at my feet and Shostakovich's Cello Sonata playing on iTunes, I finished the final edit and read-through of the manuscript. Aside from any typos that I didn't catch, this should be the version of the book that you'll see in the bookstore. If you're in the book and I thought of you as a big ass tonight, then by golly, you're a big ass in the book.

For those of you who are curious about the process, this last edit was startlingly Old Skool. None of it was done electronically, aside from me keeping my own personal file synchronized with the changes I was making with one of Schuyler's little red Crayola pencils. The copyeditor and the lawyer both made their marks on my original manuscript, and it was on those slightly dogeared sheets that they wanted my own edits. I have no idea if that means someone will then transfer all these edits to an electronic copy or if some poor slob has to retype the whole thing. I'm not going to think about that too much; I already feel guilty enough about all the trees I'm going to kill for this book.

(Just kidding about the trees. Fuck 'em.)

So. Now I have seven more days alone to amuse myself, and no actual work to do. That never ends well, you know.

August 16, 2007

Pilgrim


Pilgrim
Originally uploaded by Citizen Rob.
Schuyler loves the new. She loves to travel and meet new people and "wow..." at the world in an awed whisper. Any of you who have met her can attest to how no one is a stranger to Schuyler, not for long. Her total lack of guile and shyness and hesitation is maddening for her worried parents, but it's one of the things that makes Schuyler uniquely Schuyler.

She and Julie left for Michigan this morning. Julie was nervous and flustered as she always is whenever she travels, and I was mopey and twitchy as I always am whenever they go away without me, into a world that I have always been convinced wants to devour my child.

But Schuyler saw this trip the same way she sees the whole world, as her next adventure. I have no idea where she gets that, but I wish it were from me.

August 14, 2007

Lilly Grace

It looks like someone had a better Monday than most of us. I know Omar has indicated that he doesn't intend to write a lot about life as a new father, but I hope he doesn't make good on that intention.

Congratulations, Omar and Rebecca. Welcome to the good part.

August 13, 2007

Last Dance, Last Chance


Look what I got in the mail.
Originally uploaded by Citizen Rob.
I have a secret for you. I have been reading the same book over and over for the past four months. Sometime in the next day or two, I will finish reading it one last time, and then I will be done with it for a while. Which is good, because I am really getting sick of this one book.

Which is really only problematic since I wrote it.

I got my last batch of edits back, from a mysterious entity known only as "The Copyeditor." It is that person's unenviable job to find all the little things that I have done to mangle the English language, some of which were careless mistakes but most of which were simply little tics of mine. "That" and "which" apparently baffle me like a dog hearing a high pitched sound, for example, and I misuse "like" with the frequency of a teenage girl. I also do not envy the person who had to find every instant where I ended a sentence "like this". That period is supposed to be inside the quote, and I cannot tell you why I do it otherwise. I got it right a few sentences back, when I mentioned "The Copyeditor," so perhaps there's hope for me. (Look! I did it right again! That's how I roll now, baby.)

Shortly before putting down my manuscript and hopefully going straight to the nearest Manhattan bar for boozy relief, however, "The Copyeditor" penned an extremely cool note on the back of one page. I'm going to put it on my little brag wall, which is not so much an actual brag wall (since no one ever actually comes to my apartment and sees it) as it is a place above my desk to look and remind myself that this is all really happening.

This whole process is going much better than I ever had any right to expect. This may not be the book I ever wanted to write, it might be the Monkey Paw book for me. Nevertheless, I'm heartened by the early reactions of the professional, fancy pants people who have actually read it. I'm cautiously hopeful that once the book comes out, I may be able to do the one thing I never thought I would ever get to do in this lifetime (and perhaps wasn't all that interested in doing before Schuyler came into my life).

I might just be able to make a difference in this world.

I know, that's so cheesy that it might just squirt out of a can, but absolutely true.

Programming Note: Julie and Schuyler are going back to Michigan for a week starting next Thursday. (After careful consideration, I opted for a few sessions of Recreational Sharp Things In My Eye instead.) Will I choose to spend that time working on my new book or sitting around watching cable tv and eating until I become Robba the Hutt all over again? Place your bets now.

August 8, 2007

Martian for Dummies


We went on a trip this week out to rural East Texas to see a cousin of mine who was in town from Washington, D.C. to visit with her family. She's one of my absolute favorite people in the world and an amazing writer who has always helped me grow in my own craft.

We've been close friends since we were maybe ten years old, and yet we didn't actually meet face to face until I was in college. All those years, we wrote letters to each other, long detailed letters in which we talked about everything and, almost by accident, became writers in the process. I don't think we figured it out at the time, but the bond that we built through those letters was based on our shared experiences of feeling like outsiders, in our families and in our home towns. Seeing her again reminded me just how little that has changed. The difference now, I guess, is that we've both moved on and made peace with it.

Julie and I packed Schuyler into the car and drove three and a half hours east, into the deep woods of far East Texas, just this side of the Louisiana state line. As is almost always the case, Schuyler was the ideal traveling companion. Her curiosity and her observations about the world around her give us the chance to see that world through young eyes, and to appreciate the mystery that lurks in every imaginable spot if you're open to seeing it.

We spent the night in a hotel, and although the room had two beds, it wasn't long before Schuyler crawled in between us in the dark with a quiet giggle. She noticed a small green light on a smoke alarm above the bed, and decided that it was a fairy, with green wings. She told us this reverently and with surprising clarity, and then put herself to sleep muttering and singing softly to the smoke alarm fairy in her quiet Martian jabber, too fast and indistinct to follow.

It's a language that is frustrating and a little sad for us since it represents so much that we'll never know, Schuyler's secrets forever unshared. But I have to confess that it is also one of the most beautiful sounds in the world to me. When she plays with her toys and strikes up conversations between them, or when she makes up songs to herself (something that she does more and more) as we travel down the road, it's easy to forget that she's speaking broken words.

To me, it sounds like poetry from another world.

August 3, 2007

Stolen Child


Where the wave of moonlight glosses
The dim gray sands with light,
Far off by furthest Rosses
We foot it all the night,
Weaving olden dances
Mingling hands and mingling glances
Till the moon has taken flight;
To and fro we leap
And chase the frothy bubbles,
While the world is full of troubles
And anxious in its sleep.

Come away, O human child!
To the waters and the wild
With a faery, hand in hand,
For the world’s more full of weeping than you can understand.

(excerpt from "The Stolen Child", by W.B. Yeats)

August 2, 2007

Past imperfect


Red
Originally uploaded by Citizen Rob.
It's been a strange week in RobLand.

My legal review with the very nice attorney representing my publisher went well, although it ended up taking five hours. I'm not sure who to thank, James Frey or my own snotty writing or just common sense, but yes, five whole earth hours that I will never get back.

They weren't wasted hours, either. I defended a great many statements, changed many of them slightly, and rewrote a few. What I have left is, hopefully, clean and fresh and litigation-resistant.

It's been a week for revisiting the past, in some ways. In the process of having the book vetted, a member of Julie's family got upset about a story that was in the book, one that was important to the story but admittedly didn't reflect very well on him. The attorney cleared the story, but in the end I changed it, although I regretted it almost immediately. I've never felt like a sellout until now. Julie's been supportive of this book, however, so I figured I owed her a little family peace in return. Still, it bothered me when I did it, and it bothers me still. I shall get over it.

I received two other pieces of news this week that left me feeling... strange. I spoke to my mother early in the week and discovered that my childhood best friend recently committed suicide. He had been extremely ill with some pretty serious stuff, and I suppose it just got the best of him.

I can't remember the last time I spoke to him, although it might have been twenty years ago. In finding out about his death, I realized that I didn't actually know very much about his life, the one that came after our summers of running around our neighborhood setting off illegal fireworks and sucking down enough Slurpees to, well, give a kid diabetes one day. He'd become an adult and so had I, and our paths only crossed once more, in a brief meeting while I was in college that I barely remember. Now I feel a sort of loss, not just at his death but, I suppose, at his life, too, the one I never knew.

The other piece of disconcerting news I stumbled across was that my ex-wife has a child. This one I'm not sad about; indeed, if having a kid changed her the way having Schuyler changed me, then I'm hopeful she is happier now than she was when we were together. It was still an odd feeling, however, if only because it made me think about that life I had and that path I didn't continue.

Julie and I discussed this recently, how it's hard to think back to the lives we had, both together and even before we met, before Schuyler was born. It's weird, too, because it's not that I don't remember the events of my life back then. It's just that in my memories, or maybe in the feel of my memories, Schuyler is there. When I think back to my wedding, it seems crazy to think that she wasn't sitting there watching. When I remember my father's death almost two decades ago, it's hard to believe that she wasn't there as well, patting my hand comfortingly and speaking softly in soothing Martian.

I suppose, in a way, that she's always been there. I said recently that in my writing before 1999, I was simply waiting for Schuyler to be born, but really, I suppose that applies to my whole life.

July 29, 2007

Not available on Netflix


The fam
Originally uploaded by Citizen Rob.
If you're interested in hearing even more about my book than I am already subjecting you to here, go check out the page of video conversations with Julie and me at the book site. There are like a dozen of them, believe it or not. Clearly, I was looking for a distraction this weekend.

I have to warn you, however, that if you want to see them, you had probably better do it quickly. I'm unsure whether or not I am going to keep them up. I think the idea is sound, and I know everyone always likes to hear more from Julie.

But there are two things that keep me from making any long-term plans for these clips staying online:

1) Thanks to our crapass video camera, the actual picture quality if pretty bad, almost embarrassingly so, and...

2) I stutter like a moron.

I've got an email out to my editor asking for her opinion. If she thinks the concept works, perhaps I will get hold of an actual, twenty-first century video camera and shoot it again.

Not sure what to do about my stammer, however. Medication, perhaps.

July 26, 2007

I'll be wearing my fancy brown pants.


"Daddy writes book."
Originally uploaded by Citizen Rob.
I received an email this afternoon from the attorney retained by my publisher to do a legal reading of my book. (In true fancy pants form, his office is located on the 30-somethingth floor of an address on Madison Avenue.) He wants to talk to me about the book on Monday.

Because I am completely uncool and maybe even a little bit imbecilic, I immediately wrote to Martha Kimes, author of IVY BRIEFS: True Tales of a Neurotic Law Student and asked if this was something to be worried about. For the last few months, she's been answering all my little new author questions without asking me how I ever managed to summon the mental acuity to write a book at all, much less get one published. For that big box of patience, I would consider Martha now to be both a friend and a candidate for canonization.

Martha calmed me down, telling me that this was perfectly normal, particularly for a memoir. Still, I suspect most people enjoy getting emails from attorneys like they enjoy having a cop pull up beside them at a long red light. When they are high. And perhaps not wearing pants.

Anyway, wish me luck. I'm sure I won't be spending the weekend stressing out about this. Well, not sober, anyway.

July 25, 2007

Octopus Love


Octopus Love
Originally uploaded by Citizen Rob.
A few weeks ago, Schuyler received a gift from a reader (with no way to get in touch with them; if this is you, I have a thank you note ready to send to you), an octopus, to go with the rest of her little Schleich animals, which she has been collecting for a while. We like that they're not expensive, they're realistic and introduce her to the natural world, and they don't look like prostitutes or shoot lasers or advertise television shows. She treats them with reverence and takes care of them like they are real.

Schuyler doesn't just collect them haphazardly, though. She builds little families, and beyond that, a community. She picks them out in little family groups if possible, and when she brings them home, she put them in a little line and introduces them to the rest of her animals. It's a complicated process, and I haven't quite figured out all the social dynamics.

When Schuyler received her octopus, she named it Henry for some unfathomable reason but almost certainly related to a penguin character on Oswald, one of the few octopus references in her world. (We're probably lucky she didn't name him "The Kraken".) Schuyler wasn't immediately sure what to do with this new creature. He's the only sea creature in the collection, so he has no obvious colleagues. He tended to hang out with the dinosaurs, but it wasn't a good fit and Schuyler seemed to realize that.

Over the weekend, we were in a hobby store looking for frames, and Schuyler quickly found a display of Schleich-wannabe animals. Earlier, she had surprised us with a statement on her Big Box of Words, totally at random. "Alligator eat rabbit." Now she found an alligator and had me look for a rabbit so she could show me how this brutal natural act would actually go down.

I found the rabbit, and she treated me to a dramatic interpretation. Yikes.

A few minutes later, as I was looking at frames a few feet away, Schuyler came running up to me excitedly. She held out an octopus, smaller than Henry but otherwise very similar.

"What do you have there?" I asked.

She pointed as if to indicate some place far away and signed "boy", then wiggled her fingers in a very octopus way. She then held up this new octopus and signed "girl" and "friend".

"ER-ehn!" she said.

"Wait a minute," I said. "Are you saying you want to get a girlfriend for your octopus?"

"Yeah," she said and then jumped happily.

I can only assume that Henry is in a happier state of being now, thanks to his octopus pimp hookup.

July 20, 2007

Programming


Red
Originally uploaded by Citizen Rob.
Julie has been busy lately, working on last minute Harry Potter preparations for the book store where she works as a community relations monkey, so Schuyler and I have been spending a lot of alone time together these days.

Last night Schuyler and I curled up on the couch, just the two of us, and it would have been a really sweet picture if you were to peek in through the window and see us there. I'm not sure if you'd still get the same Normal Rockwell vibe, however, if you could see that we were watching Godzilla versus Space Godzilla.

After it was over, we changed into our sleep clothes and stomped around the living room, destroying imaginary Tokyo and attacking each other. Schuyler stopped in her rampage every now and then to open her mouth menacingly and breath imaginary Godzilla fire, although she ruined the effect by cracking herself up and giggling. Well, that and also by being a four foot tall little girl in very un-monstery Hello Kitty pajamas.

I was driving her to her summer program this morning when she suddenly called out excitedly, pointing out the car window.

"Ah-ee, oo! Eh UH!"

I followed where she was pointing and saw a police car, and that's when I realized what she was saying.

"Daddy, look! The FUZZ!"

"Is that the Fuzz?" I asked. She squealed with delight and clapped her hands at our (until now) private joke.

Judge me if you must for the things I end up teaching Schuyler, both intentionally and otherwise. We're like any parents, we pick our battles carefully, based on our own beliefs and the values we feel are important to pass down. Even if sometimes those values involve nothing more than being a smartass. Especially then, perhaps.

We'll watch some pretty questionable television sometimes, for example. Jurassic Park II: The Lost World was on last week, and I've never seen Schuyler's eyes as wide with wonder as when she watched a T-Rex walking down a quiet suburban street and into a back yard, drinking from the swimming pool and looking into a kid's bedroom window. I can't even begin to imagine how happy she would be to look out her own window to such a sight.

But after one too many trips to the bookstore when she ran straight to the Disney and Barbie sections as if there were no other conceivable book in the world, we stopped letting her watch shows that seem to be little more than merchandise disguised as educational television. So yes to rampaging dinosaurs eating the family dog, but no more Dora the Explor-ahTM.

She knows that hitting and pushing other kids is wrong, but also that she's got the right to be anywhere anyone else is, with her Big Box of Words by her side. Schuyler knows that when other kids get bossy and start telling everyone what to do, there is no greater fun to be had than to cheerfully break those rules. She wears the punky clothes that she wants, with camouflage and little bead bracelets with pink skull-and-crossbones and red hair that exists nowhere in nature, but she also knows that short shorts and the slutty Bratz attire that is so popular with the North Dallas second grade set these days (WTF?) isn't going to happen, and it's not even worth putting up a fight.

She knows nothing about Jesus (as far as we're concerned, she already has plenty of imaginary friends), and isn't going to find out more until she's old enough to make the distinction between what's fact and what's opinion. She's trusting in a very unsophisticated way at this stage; she will take whatever she is told and process it as Truth-with-a-big-T, and we feel better about her believing in Santa and King Kong and monsters right now. The difference is that fewer people will be insisting that they are real as she gets older, and she's not ever going to be pressured to live her life a certain way because someone told her that it's Godzilla's will.

Most of all, Schuyler has inherited a "Fight the Man" attitude that she is going to need as she gets older and takes on more of her own battles for equal treatment and adequate concessions for her life in a mainstream society.

Being who she is, however, Schuyler infuses that attitude with a charm that her father has never possessed. As we pulled away from the police car this morning, she smiled, gave him a wave, and said "Eye, uh!"

"Bye, Fuzz!"

July 17, 2007

Trailer

(NOTE: UPDATED 7/18)

So the big thing these days is apparently book trailers, which are exactly what they sound like: little video trailers for upcoming book releases. There are some pretty amazing ones out there, and there are some that are just awful. Mostly, I seem to find the bad ones. There's a reason we're writers and not filmmakers.

Be that as it may, I decided to try my hand at making a trailer for my book. I'm not convinced that this isn't cheesy and awful, but at least I was honest enough with myself to cut it down from my original version, which had voice-overs that could best be described as "seemed like a good idea at the time". I think my original idea suffered from the same thing that a lot of these book trailers suffer from, in my opinion. I was trying too hard. Way too hard.

I may be trying too hard with this version, too. I'll have to look at it in the morning and see how I feel about it then.



(UPDATE: Okay, this is an updated version, with some changes suggested by you. I think I like it a little better, and although I liked the Debussy, I think I was perhaps the only one. Let's see if Chopin fairs any better.)

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(UPDATE TO THE UPDATE: I kept all the other changes, but I restored the Debussy, for no better reason than the fact that it's one of my favorite pieces of music in the whole wide world (or at least the parts of the world where copyright lawyers don't send me email.) I find it to be lovely and ethereal and, you know, doodly in all the right places. Doodly is important.)

July 15, 2007

Rubber swords

This post is specifically intended for the people whom I have in the past referred to as "shepherds of the broken", the parents of special needs children, most of whom are quiet heroes.

Sometimes, when you are the parent of a child with a disability, there are times that you have to stand up and fight a system that shamelessly puts its own self-interests ahead of the very real interests of your kid.

It probably doesn't hurt if you and your spouse are lawyers.

Judges: School Held Autistic Student 'Hostage'

(Naperville Sun) NAPERVILLE Two judges have said Naperville School District 203 held an autistic student "hostage" to "blackmail" his parents into agreeing to its plans for his education.

Killian Hynes, a nonverbal, autistic 6-year-old Naperville boy, communicates using a device known as a Tango. It's as important to Killian as a wheelchair to a child with a physical disability, said his father, Kevin Hynes, 43.

That's why the Hyneses took legal action when Naperville School District 203 withheld Killian's communication device.

"I know my rights, and I know my son's rights," said Kevin, a lawyer, as is his wife, Beth, 44.

(Read more...)


(Thanks, Dorothy, for bringing this story to my attention, and Erin for the link.)

Schuyler's current situation is so good that it's easy to forget how bad it was before we moved to Plano, or how firmly a school system can dig in its heels when it is convinced that it has an interest that it needs to protect from another resource-gobbling special needs family.

If you are the parent of a broken child, you may have had your doubts as to how seriously your kid's school district takes you. There's no telling how seriously they take you as a parent or as a knowledgeable advocate for your kid, but don't ever forget that as a threat to their autonomy and their allocation of their precious resources, they take you very seriously indeed.

I googled the lawyer for the school district in the Naperville case and found her listing with a law firm which appears to specialize in representing educational institutions and local governments. (Her name isn't exactly a secret, and I'm hardly saying anything here that would get me in trouble, but I think I'll give her a fake name just the same. She's no different from countless others doing the same kind of work.) Her listing makes it pretty clear what she does for a living, and what her work might mean for a great many special needs parents.

Gretchen McLawyerson focuses on special education and students' rights law. She counsels and represents public school districts at IEP meetings, due process hearings, mediation, and student expulsion and residency hearings. Gretchen has defended district decisions regarding evaluations, services and placement of special education students in due process hearings. She has successfully removed dangerous students from the regular education environment and also prevailed in hearings to defend against a parent's unilateral private placement of a student. She has assisted clients in building residency and discipline cases involving students and has successfully defended districts' decisions in state and federal courts. Gretchen's litigation experience also includes proceedings before federal and state agencies including the Department of Education, the State Board of Education, and the Office for Civil Rights.

To be fair, a list of her recent presentations suggests that a great deal of her work involves teaching schools how to provide adequate resources for its students (while avoiding liability issues, of course). I'm sure Gretchen McLawyerson sleeps pretty well at night and believes that the work she does is in the best interests of her clients and their ability to provide services to as many students as possible, and she's probably right about that at least some of the time.

But when she gave a presentation titled "Taking Charge of the IEP Process", it doesn't take much imagination to form an opinion about who it is that she is empowering, or who it is that she believes the IEP needs to be taken charge from. Gretchen McLawyerson focuses on students' rights law, but given her clients and their interests, do you think her expertise in this area primarily rests in knowing exactly where those students' rights begin or end?

And she's just one lawyer, just one random example taken from one news story about one case that happened to catch the eye of one reader of my one little blog about one broken child amongst millions.

When I write in my book about "fighting monsters with rubber swords", it's not always Schuyler's polymicrogyria that is the monster. Shepherds of the broken protect our flocks from a variety of wolves.

July 12, 2007

Book Jabber

(This is a LOOOONG post specifically about book stuff, I'll warn you in advance.)

I got featured on Metafilter yesterday, which was both cool and a bit startling when I checked my stats. I panicked a little since I was right in the middle of updating the book site with some significant changes. God knows what people were seeing when they went there, but a LOT of them went there.

Two interesting points were made in the comments. One of them came from a long-time reader, or perhaps I should say a long-AGO reader, who enjoyed my writing before Schuyler was born but found me to have since become a one-trick pony, albeit one who is good at my one trick.

The thing is, he's right, and not just in the sense of my writing. When I think back to the life I had before Schuyler and the one I've had since she was born, and particularly since she was diagnosed, I can see how she has come to dominate my world. I'm not sure that's such a bad thing; I think I'd be kind of a crap father if it hadn't, especially given her condition. But more than that, taking care of Schuyler and fighting the good fight with her has given me a purpose, a mission even. Choosing to write a book about it made that even more true.

I know I've become less amusing and less "controversial" (which is a silly word to use since I was never really controversial so much as just sort of an ass) since those early days, but I think I found my stride as a writer, and my Muse. (Hint: she's four feet tall and speaks Martian.) So it's a valid criticism, but I'm not sure how many people really miss the guy that I was before all that much. Looking back now, I really believe that I was just waiting for Schuyler.

The other point that came up in the Mefi thread was one about which I suspect many people are curious, particularly writers who are interested in moving from online writing to the kind that kills trees. (Stupid trees. That's what they get for growing roots instead of legs.) It involves my removal of my old journal archives, and whether or not I was somehow bullied into doing so by my big mean publisher.

(One note of clarification: I removed the archives covering the same period of time as the book specifically for book-related reason. The materials from before that, in a stroke of poor timing coincidence, disappeared when the server where they had been stored all these years finally shuffled off this mortal coil. One of these days, perhaps I'll put them back up somewhere else, but I'm not actually in a big hurry to do so any time soon. Honestly, I was sort of a dick back then.)

One person remarked that the book deal came about as a direct result of my blog. (I'm not actually sure if that's 100% true, although it certainly became an important part of the marketing plan for the book soon after I signed with St. Martin's.) "That publishers decide to use their economic leverage to force authors to remove their stuff from circulation so the publisher can monetize it upsets me," they said.

So here's my perspective on that. From what I have learned this year, my contract with St. Martin's Press is actually neither unusual nor particularly draconian. If anything, it gives me more involvement in the process than I expected. I've had a crazy cool amount of input in the design, and so far the editorial process has consisted of fixing and tightening up my writing, not so much cutting. The book that will be published is probably going to look very much like the one I envisioned, except with much better grammar and fewer F-bombs. (I'm down to three, believe it or not, although one of them is a "motherfucker", which I think should make for bonus points both in Scrabble and in street cred, yo.) I didn't get a huge advance, but as a first time author I didn't expect one, and all that really means is that the book will have less to earn out before I begin to see royalties down the road. (WAY down the road, if what I've heard about publishing in general is true. Well, what are ya gonna do?)

In other words, my experience with St. Martin's Press has been almost entirely positive. I've heard horror stories about how authors are treated by the Giant New York Fancy Pants Publishing Houses, but so far, those stories haven't been my own. They've said yes to just about everything I've asked for, and my editor still treats me like I'm doing them a favor by letting them publish my book.

The part of the contract that applies to my blog ("Competing Works") is actually pretty generous, now that I go back and read it again. The contract actually gives me a good amount of wiggle room in regards to retaining material on the blog that was online previous to its incorporation into the book, only disallowing direct duplication of text beyond a contractually specified number of words. Even my archives would seem to be mostly safe, since a very small amount of the book's text is drawn directly from the blog.

With a memoir that covers the same material that a blog has covered for seven years, however, "new" is obviously not 100% clear. Anyone who has read my blog is going to be familiar with a lot of this material even though it's being freshly told.

The point becomes murky, especialy since every so often as I reviewed the blog and journal to refresh my memory, I'd come across a turn of phrase that I liked and decided to use again. How much would I be required to change a similar passage in order for it not to be considered the same material? It would have to be determined on a case by case basis, surgically removing the bits and pieces that felt too close to call.

I should mention that aside from the competing works clause contained in my contract, at no time has anyone at St. Martin's even mentioned removing my archives. (I guess they assumed that I was capable of reading my own contract, which was mostly true.) Technically speaking, I suppose I don't actually have to pull anything at all down until the book comes out in seven months. St. Martin's has been very cool about the blog and the book site; I'm sure they understand the importance of an online component in building interest in a book.

In the end, I decided to remove the archives in their entirety. For one thing, if I only used materials that I thought were especially worthwhile, then removing them would mean cutting out the best of my writing and leaving the rest. I didn't much care for what I was likely to have remaining. ("I took the best cuts of beef off this cow, but you can have the rest if you want.")

I also felt that I had entered into a business agreement with St. Martin's Press, with the common goal of bringing Schuyler's story to the printed page. Their part of that agreement involves a huge financial investment that they have no guarantee of getting back. What should my part be, beyond the writing itself? What's my commitment to this project and its worth?

I guess the main reason for taking down my archives, however, has more to do with writing itself. Telling the story of those years was important to me, both at the time and now. I just spent the past year or so telling that story with greater clarity and with the measure of understanding that has come from looking back on it. I was lucky that I was writing about it online all that time; I was taking detailed notes for a book that I didn't even realize I was going to write. Now that the book is done, I'd like for it to stand on its own.

As for the future, I'm not going anywhere. I can't imagine that Schuyler's story is going to become boring any time soon. If it does, I'll just make some stuff up.

(Joking. As far as you know.)