Sad day in Texas

Well, crap.

Molly Ivins has died, after a long battle with breast cancer.

Following as it does the death of Ann Richards, Molly's passing further thins the already shaky list of worth-a-shit Texans. When I think of her, I think of one of my favorite sayings. "Comfort the disturbed. Disturb the comfortable." It'll be harder work without her in the world.

Oh, who are the people in your neighborhood?

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Not in my Language

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



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

Zoboomafoo and Steve Irwin are corrupting the children of America

Originally uploaded by Citizen Rob.

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

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

---

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

Schuyler

---

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

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

The Pleasurable Irritation of the New

Originally uploaded by Citizen Rob.

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

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

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

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

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

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

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

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

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

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

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

Of mermaids and aphasia

Originally uploaded by Citizen Rob.

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

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

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

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

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

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

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

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

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

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

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

Autobiography

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

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

---

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

Schuyler

---

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

It’s in the hands of Fate and UPS now

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

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

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

Eighty-four

Schuyler
Originally uploaded by Citizen Rob.

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

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

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

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

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

They were wrong, and we were right.

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

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

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

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

Daniel's Monster

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

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

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

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

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

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

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

Thanks for indulging me.

Sometimes

Sometimes she makes me happier than I have words for.

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

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

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

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

Silent partner

Julie
Originally uploaded by Citizen Rob.

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

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

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

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

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

A Monster Completed

(Originally posted at SCHUYLER'S MONSTER.)

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

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

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

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

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

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

84,885 words

84,885 words
Originally uploaded by Citizen Rob.

I am DONE.

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

Anyway. I'm getting drunk now.

Happy New Year

Mother Daughter
Originally uploaded by Citizen Rob.

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

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

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

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

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

So yeah.

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

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