Because "separate but equal" worked out so well the first time...

The following was posted on another site, in response to this. While it's unusually blunt, it nevertheless represents a viewpoint that I've heard many times before, in some form or another.

Every special ed kid costs schools more money. They are incredibly expensive. Wealthy parents get lawyers and game the system for millions, and all the rest of the kids get inadequate educations that still cost more money.

They should be removed from the system and their education funded differently. Public schools should be reserved for the "neurotypical".

That doesn't mean they shouldn't receive funding; it should just come from a different pool of money–health care, probably.

When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.

As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.

Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.

I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.

Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.

This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.

If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.

Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.

Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".

I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.

Sometimes it's not monsters that we fight

From the CCN website (which I usually visit for the guilty pleasure of reading about people being eaten by alligators and sharks and bears):

"Help! My pediatrician's not listening to me"

Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:

"Parents of children with severe disabilities are often the experts on their children. They're with them all the time."

The trick here, she says, is to stand firm, even when you know you're annoying the doctor.

"You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly. For example, Green could have asked why the doctor didn't want to use one of the other potent antibiotics.

Rackner says patients can keep in mind stock phrases they can use to make the conversations easier.

For example, she says, one way Green could have started the conversation is: "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7."

Tell me about it.

New Nomads

Mockingbird
Originally uploaded by Citizen Rob.

I wrote a little somethin' somethin' about special needs parenting for PajamasMedia, called The New Nomads: Families in Search of Special Education. Go check it out and spread the love.

Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.

---

Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...

I have choices!

I have choices!
Originally uploaded by Citizen Rob.

So what is the thing that I should spend time fretting about today? The determination by the dealership that Julie's car is officially dead (turning us into a one-car family, with me working an hour away from Plano), or the fun fact that I do believe I am getting another kidney stone?

Decisions, decisions!

"Paths of Glory"

"Paths of Glory"
Originally uploaded by Citizen Rob.

I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.

Money concerns force DSO to drop concert

Britten's 'Requiem' 'very expensive'

One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.

"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."

You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.

However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.

I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.

Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.

I did not receive a response. I did not require one.

-----

Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com

I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.

Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.

Robert Rummel-Hudson
Plano, TX

Monster Paw

Cover
Originally uploaded by Citizen Rob.

It's been something of a Fancy Pants Author Week, which is always a nice alternative to Tragedy Dad Week (which I haven't had many of in a long time, knock on maybe-fake Ikea wood), Sickly Diabetic Week (also not too frequent now, knock on my pancreas) or Poverty Schmuck Week (well, that's more of a chronic condition than a single week). I anticipate having a Rough Thirty-tenth Birthday Week soon, but I'm not ready to face that just yet so we will speak of it no more.

The latest on the book is this. The bad news, not entirely unexpected, is that aside from a possible Texas schedule, there is not a book tour in the works. I won't lie to you; I'm disappointed, although for entirely personal reasons. The fancy pants book tour is part of every writer's publication fantasy. It's right up there with imagining the girl who broke your heart in high school, now sitting in her trailer with her six kids, watching you share a tender moment with Oprah on her Rent-to-Own television. (I have never claimed not to have Issues.)

But the publishing world is changing, and effective marketing is happening in other places. Radio, television, and especially the Internet are far more effective media tools, and St. Martin's thinks (and I agree) that because of my years of online troublemaking and exposure, this book is uniquely placed to thrive in this shiny new media world. Book tours are expensive, and their effectiveness in promoting books or authors is questionable. Also, it's worth pointing out that since I began this whole journey over a year ago, this is actually the first time I've wanted something from St. Martin's that they've not given me. I've been treated like a pretty princess so far, and I'd be a jerk to turn all Veruca Salt on them now.

Mostly, though, I just thought it sounded like fun.

There are some other things coming down the pike, however, all of which I will share as they firm up. (One of them, a magazine feature, might just make you poop your panties. It did me, at least metaphorically.) And if you live in Texas, I might be coming to your town, by golly, since we're hoping to put together a swing through the Best of the Big Red State. The first reading/signing will take place right here in Plano. Discerning stalkers will want to come to this one, as my whole family will be there. (Trust me, it's much better than just showing up at my home with your kids so they can make friends with Schuyler. And I'm not even making that up.) I also hear that the PR person running the event at the store is extra swell.

It's funny, dealing with all the craziness that accompanies this book, because in a way, it feels like distraction, like taking the monster and dressing it up in a tuxedo. Perhaps it will sing "Puttin' on the Ritz" for us at the signing. I've always maintained that this book was something of a monkey paw, in that it represents a long-time dream for me, but on a subject matter that I would obviously have never picked in a thousand years. But as this process continues, I am making peace with it. Sometimes, I am learning, the book picks the author.

My publicist needed some current information on polymicrogyria, so I contacted the doctors who are in the know. As I look through the information they sent me, all the old feelings come rushing back, that dread of the monster that we felt the first time we were introduced. It's weird, looking at it in ugly medical terms, the same ones that scared us so badly four years ago. (Can it really have been that long?) Much of it is written in medicalese that makes little sense to me. But some of it still jumps off the page.

"Developmental language disorder can be associated with BPP (bilateral perisylvian polymicrogyria), and its severity depends on the extent of the cortical damage. Patients with marked dysarthria are often labelled as severely retarded, although they may have normal comprehension."

...

"Most patients develop multiple seizure types, and seizure control is poor in more than half the cases. Frequent seizures may aggravate speech dysfunction and result in progressive deterioration. In patients with severe and disabling seizures, especially drop attacks, callosotomy can be considered."

...

"Epilepsy was found in almost 90% of cases..."

I'm ecstatic to have this book coming out; we all are, especially Schuyler. (Ask her about it the next time you're stalking us and just watch her face.) But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes.

I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one.

Does the cat-building make it science fiction?

BBoW
Originally uploaded by Citizen Rob.

Well, it's November and NaNoWriMo time, which explains why everyone seems to be writing about writing this month. (My favorites are the people who spend time on their blogs writing about not being able to write, or even better, not having enough time to write.) While I don't really have anything to add, I thought it might be fun to share something that was sent home by Schuyler's teacher the other day. I particularly like how she's working her real world experience into her fiction.

Once there was a scarecrow. He went to New York with his best friend Schuyler. Schuyler and the scarecrow played outside in the sandbox. Schuyler built a doll. The scarecrow made a cat. Schuyler and the scarecrow eat a pizza.

Because after genetically engineering a cat, nothing hits the spot like a little pizza...

All Hallows Eve for Monsters, broken and otherwise

I had a pretty good Halloween, as evidenced by what arrived from Fed-Ex:



(I've been coveting them like the Gollum with my Precioussssss...)

As for Schuyler, she had a great time as well, like she does every Halloween.



This year, she opted for a sort of vampire-y, Goth-y chick look. The tattoos were a gift from a cool friend when we were in New York, and it would be no exaggeration to say that she loves them with something bordering on obsession. The one on her face? Still there when she went to school this morning. I suspect she's the only girl at her conservative little Plano school with art on her face today, although I also suspect that she's the envy of every little Hannah Montana-wannabe in her class.

Even though it's a sort of punky look, we agreed to this costume for the simple reason that it was a long dress, with sleeves and no bare belly. If you're the parent of a little girl, you know just how hard it is to find a costume that isn't either goofy ("Look, I'm a Care Bear!") or something from the Li'l Prostitutes Collection(TM). Half the girls we saw looked like they were part of a child molester sting operation. If looking at an eight year-old with low rise hot pants and a bare midriff doesn't make you uncomfortable, then you might want to check yourself in for treatment somewhere.

And just like that, railing against the wicked ways of Kids These Days, I became an old man. Just in time for... that birthday, too.

This year, Schuyler trick-or-treated with her best friend from her Box Class. I don't know why we never did it before. In years past, Schuyler either did the candy rounds with a little neurotypical friend of hers whom she loved unconditionally and heartbreakingly but who was frankly a toxic little bully to her, or she went by herself, accompanied only by her fussy, boring, smelly old parents.

This year, tearing from house to house with her best friend, laughing hard and communicating wordlessly, there was no imbalance between a talking child and her, no bossy kid treating her like some sort of plaything or mascot. There was only fun, and crazy amounts of sugar, and scary displays to scream at. They had the time of their lives, and not only did not of the people handing out candy have a problem with a mute little goth girl and her Supergirl friend, I'm not actually sure that anyone noticed anything different about them.

It's extremely important for Schuyler to present her difference to the world with unflinching courage and without hesitation or apology. Nevertheless, much of the time, maybe even most of the time, she moves across the face of this planet incognito, her freak flag flying but unnoticed, like a visiting extraterrestrial who walks among us.

In that sense, I sometimes wish that every day could be Halloween. For Schuyler, in a way, every day is.

Insufficient words

On seeing the Empire State Building
Originally uploaded by Citizen Rob.

As I'm writing this, Schuyler is sitting in the seat next to me on the flight from New York back to smelly old Texas. A few hours ago, we left the home of my agent who, after being charmed by Schuyler and hearing about our interesting lodgings in a part of Brooklyn apparently untouched by the hipster invasion, invited us to stay with her. It was a beautiful home at the top of a charming building in a perfect little neighborhood, and we were made to feel like family. Schuyler loved my agent and her husband, and if we've ever had a better time than we had on this trip, I can't remember when.

There are all the actual events to report on, of course. Schuyler loved the American Museum of Natural History, as we figured she would. She abducted my agent's assistant to be her personal plaything while we explored the museum. Schuyler also managed to lose her mind in FAO Schwarz for a good three hours before picking out a toy that she saw during her first five minutes in the store. The friends of mine that she met on this trip were instantly her own best friends, and while she became a little wild and overstimulated by the city now and again, she nevertheless remained cheerful and wickedly charming. I've never been prouder of her, and that's saying a lot.

Our meeting with St. Martin's Press went very well, as I figured it would. Schuyler charmed everyone at what ended up being a very well-attended meeting, including an appearance by the publisher herself, who shook Schuyler's little hand like she would any professional author's and expressed her own personal interest in and excitement for the book. Those of you who have asked about a book tour may be disappointed to learn that there are not presently plans for an actual tour, but there are other possibilities afoot that might land me in your town at some point. Besides (and this is probably shameless even for me), publishers are known to quickly put together a tour if a book has strong early sales and good word of mouth. So, you know, I'm just saying.

I also got to see an actual bound galley of my book. Which was, to be totally uncool, very cool.

Another thing that I think I can mention now (and enough people at SMP admitted to reading the blog that I assume I'll get a quick, frantic email from someone if I'm not supposed to say anything yet) is that in February or March, it looks like Schuyler's Monster will be featured in Wondertime, a fun and really well-written, hipster-y parenting magazine that I've liked for a while. (The first four issues they put out a few years ago included a series of articles about a little boy with a similar speech disorder as Schuyler's, and it was well-done enough to catch and keep my attention.) Wondertime is published by Disney, so it should be easy enough to find. I'm in league with The Mouse now. I assume they won't pick a part where I sound like a vulgar yokel. Good luck with that, Wondertime.

I had some fancy pants author moments, but mostly, I was a dad on this trip. More than that, I think Schuyler and I became better friends this week, sharing experiences that required few words. After our meeting at St. Martin's, I took her for a walk towards the Empire State Building, site of her hero's last stand against pesky bi-planes. About half a block away, I told her to close her eyes. I led her to the corner, got my camera in place, and then told her to open her eyes and look up. I thought I'd get a photo of her look of amazement. Instead, I captured a moment of pure, unbridled joy, a full-throated howl of recognition and challenge, as if she were ready to take up the battle herself. She did the same thing the first time she saw King Kong, when he leapt out of the jungle to save his girl from the dinosaurs. It is easily my favorite photo of the trip. It might be my favorite ever.

I watched Schuyler as she took in the city, observing as she attempted to make friends with other riders on the subway (with admittedly mixed results) and as she yearned to help a man passed out in the street, sadly telling me about him for the next three blocks. She told me all about what she was seeing, things that amazed her such as looking down on buildings with gardens on their roofs. During the many uninterrupted hours we shared, she asked me questions about my own father that she'd never asked before, and listened earnestly as I tried to explain what it means when someone dies. We became closer than ever, closer than I thought possible, in ways that the parents of neurotypical kids might take for granted but which felt like gifts to me.

I saw the city through Schuyler's eyes and was never bored, and if I thought this trip was going to be about what Schuyler got out of it, about what she stood to learn from the experience, I was as wrong as I've ever been in my life.

I'm trying to explain what this trip meant to me, and to Schuyler, but I'm failing miserably. And perhaps that's okay. The best parts, the ones I can't explain very well, they belong to us anyway.

New York, Old Navy

Travelers
Originally uploaded by Citizen Rob.

So is it real irony or Alanis Morissette irony that Mister Fancy Pants Author forgot to pack his pants for his meeting with St. Martin's Press?

Huh. I guess I know what our first stop is going to be, once we get out of Brooklyn...

A question and a chuckle for you

UPDATE:Okay, I closed the poll a little early since I needed to print up the results, and they were running pretty consistently. Thank you, and just to let you know how much I appreciate your help, here's an amusing and wildly unattractive photo of me.

(And before you feel inclined to say anything "helpful" about my new Ahab look, I did in fact finish shaving it off after taking this photo. And, you know, after cracking myself up. I am easily amused.)

Eagerly awaiting the revolution

Sometimes I get email from old skool readers asking why I don't write about politics anymore.

I don't know. I guess I usually just find it easier to stick my finger down my throat...

A Father's Journey with His Wordless Daughter

On the bumper with Dad
Originally uploaded by Citizen Rob.

In a week, we head off to New York City, and Schuyler is getting excited. She took us shopping for a nice outfit for our St. Martin's meeting and had me add some terms to her Big Box of Words (like "sea monster", "mermaid" and "New York City"). We even stopped by the still-frightening Libby Lu for another set of the little face jewel sticker thingies so she can dazzle the big city.

I'm a little nervous about this trip, of course. Despite the positive experience I've had all along with St. Martin's Press, I still worry about making an ass out of myself. It's a silly fear for a number of reasons, not the least of which is that they already read my book, which is full of stories that don't necessarily make me look like the nicest, smartest or most emotionally stable person in the world, and their response was "Let's publish this, by golly!" They already know the embarrassing parts.

I also worry about dropping the ball and losing Schuyler on the streets of New York. This is also sort of silly since anyone who has ever spent time with the two of us can tell you that I am a fussy and twitchy father when I am flying as solo parent with Schuyler. When Julie is there, we spilt the freaking out duties, but Julie is entering her busy season at the book store (where, by the way, she has gotten permission to hold my very first appearance, which feels exactly right) an won't be with us. It's just me and Schuyler and all my worries.

When she was a baby, I had an irrational fear of taking her on the second floor of a mall, after all. I was convinced that some lunatic was going to run up to her stroller, grab her and toss her over the railing. I also thought big dogs would run up in the park and run off with her, wiggling sadly in their big slobbery jaws. I don't expect any New York misadventure to catch me off-guard, although just typing that sent a little wave of anxiety through me, heightening the spaz factor up another notch or two.

For Schuyler, this trip is about building memories for her. I have no idea how she'll feel about this book when she's older, although from what I know of her personality so far, I suspect she'll be more interested in the possibilities of helping other people than in whatever privacy issues might arise from the book. She's excited about it now; ask her about the book, and she'll either refer to it on her BBoW as "my monster" or "schuylers monster", which is especially fun since I don't believe I've ever referred to it by name to her. She's picked that up on her own.

But no matter how she feels about it down the road (perhaps she'll write the sequel, Schuyler's Dumbass: The Stuff My Father Got Wrong), at the very least, she will one day be able to look back and remember that her father's book gave her the opportunity, however brief, to step out of her monster's shadow and walk the streets of Manhattan like she owned the place. She'll have memories of the museums and the energy of the city and seeing the site of King Kong's last stand. She'll be able to remember going into the Flatiron Building to talk to fancy pants publishing folks about HER book like the literary figure she is.

She's earned this. Well, I think we both have, really.

My voice is my power...

This was put together by a tenacious group of teenagers who are much more significantly impaired than Schuyler but who use similar speech devices.

Produced by an AAC advocacy group in the UK called 1 Voice.

These should be Schuyler's monsters

A number of you have written to me to let me know about this, which is coming to Dallas at the end of the month. I saw a commercial for it on television this morning, and it looks amazing, in a "watch Schuyler's head explode" kind of way.

Tickets are not cheap, and this is one of those things that I suspect is much more effective when you're not sitting in the nosebleed seats. I'm trying to decide if we can afford this, especially coming off a no-doubt expensive trip to New York, but I suspect I'd kick myself for the rest of my life if I didn't take Schuyler to this, with her dinosaur love.

I mean, come on. Look at that.

---

UPDATE: We're going, woo!

When I showed Schuyler the video, her eyes got huge.

"Are they scary?" I asked.

"Yeah," she answered.

"Do you want to go see them in person?"

"Yeah!"

She's a thrill junkie.

Transfiguration, at the mall

Small amazement
Originally uploaded by Citizen Rob.

Schuyler was recently invited to a birthday party by one of the girls in her Box Class, and since Julie had to work, I was flying solo. No big deal, I do it all the time. The two of us are taking Manhattan like Muppets in a few weeks, after all. Birthday parties are cake, so to speak.

It wasn't until this morning, a few hours before the actual party, that I took note of the fact that this party was to be a Club Libby Lu party.

How to explain Club Libby Lu to the uninitiated? And unless you are a parent of a little girl between the ages of maybe five to twelve, or you're actually a little girl yourself (in which case you shouldn't be reading this blog, the creepy old fat man uses dirty words sometimes!), you are almost certainly uninitiated.

"Club Libby Lu. A special secret club for super fabulous girls can get makeovers parties, play games, get advice, and find really cool princess paraphernalia. It's a girl thing!" That's the company line.

There are plenty of dissenting opinions, such as this sort of horrifying article called "Glamour Babes" from the Washington Post. That's a scary article, and it left me with a sinking feeling in the pit of my stomach all day.

Despite my misgivings, I took Schuyler to the party anyway, because the time she spends with other kids outside of school is precious to her, particularly when it's with other kids with disabilities. Also, I would be there scowling menacingly at anyone who tried to dress my daughter as a crackwhore.

I'm not going to dispute the issues of Club Libby Lu as a concept, and I am sure that a lot of parents have a different experience than I did. But today, when the local Club Libby Lu found itself host to five little girls with varying degrees and types of disabilities, not a one of them capable of unassisted speech, the gum-smacking Hannah Montana clones working the party did something I'm not sure I was expecting.

The long version is that they dressed Schuyler and her friends in sassy glam rock outfits and put up their hair in trendy, hairspray-shellaqued styles. They made up the girls' faces and assisted them with creating bubblegum-smelling lip gloss and let them shower each other's heads and clothes with sparkle dust. (Schuyler took particular joy in putting a generous handful in my hair, too. Every time I move my head, the world in front of my face becomes a Disney movie special effect.) They ended the afternoon with a little dance party and a group photo. The Libby Lu staff laughed with these kids and listened to them jabber excitedly along every step of the experience, and if they were put off in any way by the fact that almost none of what was being said to them was intelligible, they did not let on even for a moment.

The short version? Club Libby Lu transformed five broken little girls into absolutely normal tween pop culture princesses, if only for an afternoon. And for that, I will never speak a word against them.

Stalker tip

Schuyler in NYC, 2003
Originally uploaded by Citizen Rob.

If you find yourself wandering the streets of New York City any time between October 23rd and 27th, and you see a fat old man with a questionable beard and a cute little girl who talks like Stephen Hawkings, it just might be us, by golly.

Schuyler is excited, although I don't think she really remembers much about the city. She was only three years old the last time she was there, after all. That feels like a lifetime ago.

Aside from our date with monsters, our meetings with the fun folks at St. Martin's Press, and a visit to the Empire State Building (where, she informs me that unlike her hero, we shall ride to the top on the inside; she apparently understands that contrary to popular beliefs, it IS the planes that will get you), our plans are pretty wide open. Suggestions are always welcome.

Incidentally, hotel prices in New York City? Not funny. Not funny at all.

Breakup

The end of a relationship can be hard, but it can also feel like a fresh, cool breeze on a sweltering day. Sometimes you get to the end of a relationship and wonder how it ever went on so long in the first place. Complacency is a powerful force, but when its bonds are finally shattered, the happiness you feel makes you realize just how bad things had become.

I got out of an abusive relationship this weekend. I broke up with Bank of America.

I received a check from my publisher on Saturday and took it to the bank to deposit it. I braced myself for trouble because it was an out-of-state check, and sure enough, I was told that there would be a hold on it while the funds cleared, and those funds wouldn't be available for TEN DAYS. Apparently Bank of America doesn't cotton to that new-fangled electronic gizmo banking, but instead prefers to put my check in a leather satchel and hang it on a post outside, to be picked up by the next Pony Express rider as he heads north through Indian Country on his way to New York.

I explained how this was uncool since any royalty payments I receive for this book (shut up, it could happen) will come this way, but the bank manager shut me down, and not even fake-bank politely, either. When I said that I was considering closing my account and opening a new one somewhere else, she said that these rules were FDIC regulations and would be the same at any bank I went to, so don't bother. Furthermore, if I used this particular check to start a new account somewhere else, there would be a 90-day waiting period before those funds became available.

"There's nothing you can do, little man," she said. (paraphrased) "Submit and go home."

So I walked out to my car, drove down the street to another bank (one that had come highly recommended by another writer for just this reason), and thirty minutes later, I had a new account. The funds will be available tomorrow or Wednesday.

I'm not going to kid myself. My new bank doesn't do business in order to help the common man and make the planet a nicer place to live. But I feel like I just broke up with a girl who was narcissistic and hateful and liked to stab me in the eye with a fork. If my new girlfriend turns out to be a crack addict or a boogereater, at least it'll be a new kind of anxiety. It's nice to change things up from time to time.

Have a nice life, Bank of America.

---

UPDATE, 10/3 - As good as their word, my new bank came through with my funds, and I even got a call just now from the bank manager to let me know. The funds actually became available before I've even received a debit card in the mail. Fancy!

No-fly zone for monsters

The Plano Balloon Festival took place this weekend, and unlike last year's Elmer Fuddlike weather ("Awise storms! North winds bwow, south winds bwow..."), this year the skies were perfect. We spent the weekend chasing balloons around town and watching them land in front yards and in the middle of city streets, as well as in the little park adjacent to our apartment complex. We attended the launch on Saturday night and stuck around for the nighttime lighting of the balloons and a surprisingly cool fireworks show.

It was fun and perfect and absolutely and totally devoid of the monster. Schuyler made a friend at the festival who simply asked if she could talk. After we explained Schuyler's situation, the girl shrugged as if she well and truly did not give two shits, and the two of them ran off to play, only pausing briefly at one point to collide, bonking heads cocoanut-style and crying for maybe 30 seconds before shaking it off and taking flight again.

Only now, looking back on it, is it clear what a nice weekend it really was. I suppose like most of the best moments in life, we were enjoying it too much at the time to notice.

Not exactly "Snakes on a Plane"

Maxie
Originally uploaded by Citizen Rob.

Schuyler and I were discussing our impending trip to New York City (impending as in "as soon as I get paid my last installment of crazy book money"), listing the things we want to see while we're there. She's jazzed about seeing the Mythic Creatures exhibit at the American Museum of Natural History, of course. There's also apparently a butterfly conservatory, too, so her little head may explode by the end of that day. I told her that she's going to meet my agent and my editor and the people who are making the book, and she seems excited about that as well.

And of course, she wants to see the Empire State Building. Her Kong love never wavers.

As we lay on the ground outside our apartment last night, letting Max roll in the grass and looking up at the stars, we discussed the trip. You'd be surprised at how well we communicate, even without the Big Box of Words. I can understand most of what she says pretty clearly, and Julie can understand almost everything. We'll usually repeat what Schuyler says back to her, just to make sure we got it right, and when we do, she says "Yeah!" with an excited smile.

"Are we going to take Maxie with us?" I asked her. She'd had a scary moment earlier when Max had gotten away from her and had almost run in front of a car, so he was still very much on our minds. She looked at him as he lay on his back, chewing on grass.

"No," she finally said, and then started laughing. She was cracking up, hard, and I had no idea why.

"Why not?" I asked, as if taking a puppy to Manhattan were a perfectly reasonable plan. "What's so funny?"

She finally stopped laughing long enough to say that we couldn't take him because he would pee and poop on the plane. She continued busting up about the idea for the rest of the evening, and she brought it up again this morning.

Two important things to note about Schuyler's observation:

1) She's absolutely right, actually.

2) She thinks poop is funny. This is also absolutely true, if only to us.

Different

At play with the wolf cub
Originally uploaded by Citizen Rob.

We were watching a pair of documentaries on television about the world's tallest man and woman yesterday, which Schuyler and I both found fascinating. It sparked a surprising dialogue.

I've always had a morbid fascination with people who suffer from gigantism, ever since my own freakish growth spurt in fifth grade, which sent me from being a normal, even slightly smallish kid to a 5'11", size 11 shoe-wearing monster who towered over most of my classmates by the next year. I had no way of knowing that I was only two inches away from my eventual adult height. I thought it was the beginning of the end for me. In my mind, I was going to be one of the tall, lonely people detailed in the Guinness Book of Records, shambling around sadly with a cane and a crowd of onlookers, waiting for my giant heart to fail. I'm not kidding, it was a very real fear for me.

I don't think Schuyler has any such fear. She is getting tall, but not unusually so, and probably only to my eyes since she was a tiny little infant, what, like two weeks ago? I understand the inevitability of Time and its steady march, but with a bad birthday coming up, I feel a little like that march is happening right over my face. And Time might just be wearing rollerblades.

The documentaries we watched discussed the inevitability of unwanted public attention for their subjects, and for some reason, this really caught Schuyler's attention. Schuyler is luckier than a great many broken children in that she doesn't get a lot of stares. Her condition isn't one that attracts stares or comments, not immediately. It sneaks up on people who see her as a normal, even precocious kid right up until the moment that the Big Box of Words comes out of its bag, or she starts talking loudly and excitedly about something.

But she's aware of her difference, and last night, she wanted to talk about it.

She pointed to the woman on TV as she stood in a crowd of gawkers, and she signed to me that the woman was sad. I was a little surprised by this observation, since it wasn't an obvious thing to notice; the woman was smiling for the photos, after all. I suppose Schuyler has seen her share of sad smiles.

"Why are all those people looking at her?" I asked.

Schuyler put her hand on top of her head and then thrust it up in the air as if she were being measured.

"She's different, isn't she?" I said. "Who else do you know who's different?"

She indicated herself, pointing to her throat. She then went on to name her classmates one at a time, signing the things that made them different. We'd had a discussion earlier in the day about treating people who are different with respect, after she had pointed to a waiter and signed that he had a red nose. The topic was apparently still on her mind.

"Everyone's got something different about them, don't they?"

She gave this some thought and then pointed to me and indicated that I was also very tall. (Well, when you're four feet tall, isn't everyone?) She reached out, rubbed her hand on my beard and laughed. Well, it does look different, and not necessarily in a flattering way. I didn't need a seven year-old to tell me that.

Interestingly, when asked what was different about her mother, Schuyler couldn't think of anything. Julie wears her freak on the inside.

Angelic

Monument in Lights, 2/02
Originally uploaded by Citizen Rob.

I was channel surfing this morning and came across MSNBC's replay of the NBC live coverage from the morning of September 11, 2001. I came in after both towers had been hit and watched until the second had collapsed and reports were starting to come in about a plane crash in Pennsylvania, and was there a connection?, etc.

In my own 9/11 remembrance routine, the only thing I actually plan every year is a listening of On the Transmigration of Souls, the New York Philharmonic's 9/11 commission by John Adams. I usually skip the memorial ceremonies broadcast on television. I find it weird to visit the WTC site in person now, with its weird combination of new construction looking to a Bright Shining Future and all the reminders of the Day the Music Died Past, neither of which feel right to me. Watching it on TV is even worse.

But while I wouldn't exactly say that I enjoy watching the replay of the actual coverage, I do find it to be more affecting and real to me. It serves as a reminder of how it really felt on that day, the "what the fuck?" feeling that washed over us all. It's easy to remember the fear we felt as we watched the individual moments of horror unfold on the screen, but we forget until we go back and watch it again how unprepared we were to process those moments as they unfolded in real time.

This morning I watched as the first tower crumbled while Katie Couric kept on talking about something or other, only to be interrupted a few seconds later by someone pointing out that it appeared something was happening, perhaps a section of one of the buildings falling off. It was at least five minutes before someone actually said out loud that the tower had actually collapsed. It reminded me how even when our eyes told us what we were seeing, our brains were still trying to find some context.

Now, six years later, we have an expanded context. The new president who climbed on top of the rubble pile and issued a warning to the terrorists as the whole world stood behind him has been replaced by a lame duck reviled by the international community and even some members of his own party. The war we've been fighting and losing has replaced our capacity for horror and citizen outrage with a numb weariness. If there were another terrorist attack on this country today, I suspect the reaction, both from our citizens and the rest of the world, would be very different. Less shock, more "okay, here we go..."

Six years. I think this year is the first one in which it doesn't feel like it just happened. So much has changed in my own personal life as well. In 2001, we lived in Connecticut and were only beginning to suspect that Schuyler's lack of speech might be something more than just a delay. The day we faced a big monster in Manhattan, Schuyler's smaller monster still lay waiting to be discovered. She was not even two at the time, stumbling into toddlerhood even as the world in which she would toddle was changing as well. Now she's a little girl of almost eight, all legs and motion, and the world that changed is starting to feel a little old and dusty again, as if it had always been this way.

Everyone's memories of September 11 are colored by their own lives and experiences, so it's probably no surprise that to me, 9/11 is infused with thoughts of Schuyler, like two different colors of paint that have been swirled but not mixed. Less than a year before the towers fell, we had taken Schuyler there, and I have clear memories of her gazing wide-eyed up at the towers as she put her tiny hands against the cold surface of their sides, and of the very first time I ever heard her braying, unashamed laugh, the one that I hear almost every day now. I also remember with sober clarity our trip to the site a week after the attack, and how Schuyler's smile made a weary police officer cry.

"Look at that smile," she'd said as she bent down to meet Schuyler. "You are just like sunshine to me right now!"

When I sent my book off to my editor at St. Martin's Press, I braced myself for one chapter in particular to be cut, the one called "The Saddest Place in the World". It was one of the few parts of the book that was drawn largely from what I had written online at the time, mainly because when I went back and reread it, it said exactly what I wanted to say about September 11th. I was ready to fight for my Chapter Five, because while it didn't have much to do with Schuyler's monster, it had everything to do with the lives we were living. I wouldn't know how to tell her story without talking about what it was like, living in America and particularly right up the road in New Haven, in the shadow of those Great and Awful Days. When Schuyler was diagnosed two years later, her monster was born into a world already made monstrous.

My editor left it mostly untouched. Of all the things she has done for me and this book, that might be the one for which I am the most grateful, or at least that's how I feel this morning.

The chapter concludes with almost the same words as an entry from those days:

"America when will you be angelic?" wrote Allen Ginsberg. I think about the people who died all those years ago, those faces on desperate, hand-lettered posters and ethereal voices crackling over cell phones. I think about all those souls, all those young lovers and sad lonely people, the greedy and the generous, the pragmatists and dreamers and gentle mothers and rowdy fathers. They were just like me, and probably like you, too. They weren't angelic. None of us is.

Even as I write that, however, I know it's not true. I do know an angel. I watched her bless doomed towers with tiny hands and grant absolution to police officers whose hearts were breaking. Schuyler's an angel and also a bit of a devil, a fragile flower who speaks in a howl. She remains, now as she was then, the reason I give a damn.

My Beloved Cyborg and Me

Our first artistic collaboration
Originally uploaded by Citizen Rob.

When Schuyler gets handed school projects that are beyond the scope of her monster, we roll up our sleeves and get creative. This weekend, she has to make a giant poster for her turn as the Second Grade Star Student of the Week, although it's unclear if she's actually the start student or if this is just getting the poster ready early. Apparently every kid gets a turn, which is probably as it should be in second grade. Let every little monkey get a taste of celebrity and power.

Schuyler functions pretty well in a mainstream setting, and she'll continue to improve as she goes alone. But like many of her projects, the big poster presented some challenges. Schuyler's handwriting is still very hard to read, for example, and she doesn't deal well with small spaces in which to write. We've been having her write out as much of her homework as possible, as opposed to printing it off the Big Box of Words like we did last year, but for her poster, we decided to use the computer and help her create something with a little zazz.

I know some people probably would disagree with helping her out with a project like this, as if we were ashamed of her monster-fogged work. I guess we felt that Schuyler's poster should reflect the girl behind the monster, rather than seeing all her interests and loves obscured by the Difference. Her artwork is good stuff, and her ideas of what she wanted to present were very cool and, yes, very Schuyler. (She drew King Kong, of course.) But since her writing is a problem and doesn't really keep up with the crazy race going on inside her head, we decided to do a few items for the poster as a family, and in doing so, bring some computer power into play.

Which was how Schuyler and I came to create a real artistic collaboration, a little comic book-style page telling about her new puppy, Max. She wrote the text and helped choose the photos, and I did the formatting for her, using basic Apple "drag this here and type this here and suddenly everyone thinks you know what you're doing" software.

(I was already thinking of comic book formatting because I'd been tidying up my old site, reformatting my old "pet blog" parody site, Flappo!, the night before. I know Flappo! was crude, and since the pet pages trend mercifully died out pretty soon after, the joke of vile, rude pets instead of cute, fluffy ones is sort of dated. Still, I have to admit, of all the pre-diagnosis things I ever did, Flappo! was maybe my favorite. It was my first attempt at humor after September 11th, although I'm not sure anyone else thought it was actually funny. Still, I sort of miss the guy who was writing that sort of thing, back before I became all Twenty-four Hour Tragedy Dad.)

When our Max page was done, we all just sort of looked at it and said, "Wow, maybe it looks TOO good." We didn't want it to appear that Schuyler just sat around playing with her dinosaurs while mom and dad obsessed over having the Absolutely Most Perfect Poster of all the Plano Kids, by golly. She served as both writer and director, after all.

But for Schuyler, with so much of her future waiting for her in the world of computers that will help her speak and create, even more so than most kids, perhaps it was fitting that she once again was able to compensate for her monster by electronic means. If Schuyler's going to have to engage in these compensatory measures to get through school, I think it's only fair that she be able to do so with style.

Schuyler's future looks great, so long as there's electricity. If civilization collapses and we all revert back to primitive life, however, I suspect she'll still be the kid holding the conch shell.

"How do you like me now?" - College Edition

The book release it still five months away, but I got my first press since the Publishers Weekly announcement a year ago. It felt sort of fitting that it should be in my college newspaper, if for no other reason than it'll give all my old professors a chance to marvel at the fact that I have a life with a family and a career and a book deal, and that I'm not working as the night manager at Taco Bell or editing the inmate newsletter in federal prison somewhere.

And just like Time's Person of the Year, the star of the story (or at least the headline), dear reader, is YOU:

Blogs, financial support help break girl's silence

(In the actual, kill-some-trees-mwuh-ha-ha printed version, the title is "Breaking Her Silence", which I like much better. Too bad they actually misspelled her name in the headline and again in the floating box on the continuation page. Welcome to our world.)

I thought the reporter, Courtney Sevener, did a good job. When she interviewed me, she didn't start off asking what the book was about or who the hell am I or whatever. She did her homework and hit the ground running with a good basic understanding of Schuyler's condition and how we got to where we are now. I hope the media I talk to in the future show as much professionalism as a sophomore college reporter did this week.

My only complaint about the article is that I don't appreciate the photographer apparently using Photoshop to give me a giant Robba the Hutt belly and boobs. That's just not right.

Someone probably touched his nuts

Do you remember in the scary and tumultuous days following September 11, 2001, when news sites like CNN.com were so busy that the servers were overloaded? The amount of information being presented was constant, it seemed, and rapidly changing. It felt as if the world we'd known before would never return.

This morning, less than a week before the sixth anniversary of the attack, CNN.com is linking to a story from an Orlando affiliate about a new, vicious attack on innocent, God-fearing Americans.

Squirrel Attacks At Day Care

I think it is important to read between the lines here, incidentally. When a child is bitten nine times by a tiny rodent, that is a child that is grabbing said rodent.

Anyway, my favorite line, the one that made me feel like despite it all, we're all going to be okay in this grand rough world, is the last one:

"None of the injuries seem to be life-threatening, officials said."

Thank God. When squirrels kill Americans, the terrorists win.

-----

BREAKING NEWS: In the time it took to post this entry, they've updated the story. It is now a story about a three-year-old HOSPITALIZED because of the squirrel attack. Not so amusing now, I suppose. Apparently he was on a swing when the attack came, from a squirrel so nasty and cruel and unrelenting that it even took on a Florida Highway Patrol trooper.

So my apologies if it seems that I am not giving this scary squirrel attack the gravitas that it deserves.

Although I wouldn't be me if I didn't point out the NEW, equally delightful last line:

"The squirrel in the playground attack managed to escape."

So, you know, be vigilant, citizens.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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)

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.