May 30, 2007

Monster slayer, redux

I'm finishing up final edits on SCHUYLER'S MONSTER and getting photo materials together, all during the week between Schuyler's last day of school and her first day of summer school. In other words, things are sort of crazy busy around here. Perhaps I'll keep posting the occasional photo, just to keep things semi-fresh.

I'll be back soon, though. That's a promise. Or a threat, I suppose.

May 28, 2007

Memorial Day, 2007

"Paths of Glory", C.R.W. Nevinson


Move him into the sun--
Gently its touch awoke him once,
At home, whispering of fields unsown.
Always it awoke him, even in France,
Until this morning and this snow.
If anything might rouse him now
The kind old sun will know.

Think how it wakes the seeds--
Woke, once, the clays of a cold star.
Are limbs so dear-achieved, are sides
Full-nerved,--still warm,--too hard to stir?
Was it for this the clay grew tall?
--O what made fatuous sunbeams toil
To break earth's sleep at all?

Wilfred Owen (1893 - 1918)

May 25, 2007

Acronym Planet

Originally uploaded by Citizen Rob.
Schuyler had her last IEP meeting this week, which was also her final week of school. (We're celebrating later today with some Father/Daughter Age Inappropriate Pirates & Monsters Movie Time. Don't judge me, jealous haters.)

The IEP, or Individualized Education Program, is part of the implementation of the Individuals with Disabilities Education Act (IDEA), which we Shepherds of the Broken use, along with the Americans with Disabilities Act (ADA), to bully the rest of the world into helping our kids get an appropriate education and generally not get swept under the rug. The IEP is the plan by which parents, teachers and therapists decide on the course of a student's school studies.

Here's what the government says about the IEP:

Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

To create an effective IEP, parents, teachers, other school staff -- and often the student -- must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing -- and implementing -- an effective IEP requires teamwork.

What that little block of government-issue cheese doesn't tell you is that for many parents of a broken kid, or perhaps even most parents, the IEP meeting itself is usually a gigantic, frustrating pain in the ass.

We've been lucky since coming to Plano. Our IEP meetings are generally a breeze now, although we certainly paid our dues back in Manor (the district near Austin where she attended school before) and in New Haven. I still remember the meeting where Schuyler's speech therapist in Manor finally admitted that the reason she wasn't recommending sign language was that she didn't know it herself and didn't think she had time to take a class. That was swell.

The Plano public schools' special education programs are among the best in the country, and so for the first time we've been able to relax a little and allow her teachers to take the lead. You have no idea what a relief that is, unless you have a broken child yourself, in which case you know EXACTLY what I'm talking about. IDEA provides for something known in special needs circles as "FAPE", or Free Appropriate Public Education. It's the part of the law that sets the minimum standard for special education in public schools. In some cases it's a life saver; in others, a mockery.

(If you want to put your broken kid in a neurotypical private school, you're on your own. Private schools do not have to accept students with special needs, and many choose not to. The ones that do typically make the parents of the child responsible for the cost of additional resources. On the other hand, your broken child is free to talk about Jesus, so there you go.)

What FAPE doesn't guarantee is the best possible special education. It provides for an "appropriate education", which many courts have defined as "access to an education" or a "basic floor of educational opportunity". Parents who go to court seeking additional services for their kid are told never to use the terms "best" or "maximizing potential" during legal proceedings. Parents have to educate themselves on what their kids need, and they need to find the programs that serve their kids the best. The idea of moving to a whole new city in order to put Schuyler in a particular school district struck some parents as an extreme move on our part, but to other parents of a broken child, it made perfect sense.

Plano was worth it, and continues to be worth it, but the thing is, it's not just because the teachers and specialists are good. Schuyler's team is exactly right for her for one simple reason. With a very few exceptions, they almost never tell us what she CAN'T do. They assume we already know that, and they're right. They set goals for Schuyler, they let us know when she's succeeding and when she's falling short, but they never set boundaries and they never accept limitations for her.

They get her. I suspect they get them all.

At her last meeting, her team pushed hard for a cognitive evaluation, a school-mandated three-year assessment of her abilities that we originally resisted when she was in Manor. I didn't trust her old school team in Manor, not with a test like that. Such a test is very difficult to administer to a non-verbal subject, and very subjective, so it requires an expert test administrator who can make appropriate accommodations for a nonverbal subject. This is the first time we've trusted the school to administer such a test correctly. Even so, I had and continue to have my reservations.

At the end, there's a number, and our fear was that it would be a number that would follow her along forever. Schuyler didn't do poorly on the test, but she had problems. I was happy to see that her team did recognize (in the actual written report itself) that her score probably represented the low end of her actual capabilities. It was nice to have confirmation that I'm not just being Defensive Denial Dad when I mention her aversion to evaluations. They see it, too. Schuyler can be defiant in evaluations, perhaps partly in sport but mostly because she becomes extremely impatient. She likes to give the answer after merely glancing at the possibilities, and the problem only gets worse as the test drags on. It's a problem that they identified at this last meeting, and one that we're going to have to work on.

The possibility was brought up that she might be ADD. Attention Deficit Disorder often accompanies cerebral palsy, which is related in many ways to Schuyler's polymicrogyria. Because of her malformed brain and the fact that no one knows exactly how it functions at the high level that it does, medications that affect brain chemistry are probably out of the question. But ADD was mentioned only as a possibility, and not one that they even feel compelled to test her for yet, so it's probably a little early to freak out. Even so, Julie and I were both surprisingly unmoved when they mentioned it.

With everything that our daughter has been through (and will likely go through in the future) with polymicrogyria, Attention Deficit Disorder isn't very scary. Compared to Schuyler's monster, it's a hamster.

May 19, 2007


Originally uploaded by Citizen Rob.
A few months ago, we saw a bunch of llamas hanging around in a huge pasture, right in the middle of boring old Plano. We got out and took a few photos and generally looked at them like the llama gawkers we are. Important to note here is that these llamas were not particularly close to us, and they didn't make a sound.

A few weeks later, we drove past the llamas again.

"Hey Schuyler," I said. "What do llamas say?"

She looked at me and answered with confidence.

"Om? Om? Om?"

It was pretty funny, and no matter how many times we ask her or question the validity of her llamaspeak, she's never swayed from her answer, in all these months. We thought it was random and cute, so we have her do her llama impersonation a lot.

This morning, as we watched our Saturday morning kiddie shows, and there was a segment on llamas. And guess what they say?

Turns out, Schuyler knows EXACTLY what llamas say.

I have no idea how she knows this. Is my kid hanging with strange llamas at school? I always knew she'd end up running with a weird crowd, but I didn't see this coming.

May 15, 2007

Just a little FYI

Bird friend
Originally uploaded by Citizen Rob.
An entry I wrote recently about Schuyler and her device is being featured in this month's Parents' Corner column over the AAC Institute site. The AAC Institute is a not-for-profit advocacy group for augmentative and alternative communication (AAC) users. AAC includes a wide range of technologies, including the Big Box of Words.

I'm really happy that Robin Hurd at the AAC Institute asked me to contribute. She's a well-known advocate for those with developmental disabilities and a parent of twins a little older than Schuyler who both use communication devices. She knows her stuff.

(Edited to add: There's a good interview with Robin Hurd at The Autism Life where she explains some of the concepts behind AAC.)

This kind of advocacy for a cause that is responsible for Schuyler's second chance at a full life is exactly the sort of thing I hope to accomplish more of when the book comes out. All the fame and wealth and hot young English major groupies are just the icing on the cake.

May 14, 2007


I've got a secret.
Originally uploaded by Citizen Rob.
A few friends of mine have recently discovered or announced that they are having babies soon. Well, soon in the usual gestational sense.

Sometimes I get a sense that people are hesitant to tell us that they're having a baby. (Not these friends, I just mean in general.) I can understand why. Our friends know that we wanted a second child that we were never comfortable in risking. We've made peace with that, I think, and yet there is a tiny little bittersweet tug when talk turns to babies. We always thought that Schuyler would have made an incredible big sister.

We've also read too many sad stories of kids with polymicrogyria manifest much worse than with Schuyler. Gambling with that possibility was more than we were willing to do. And of course there's the ever-present likelihood (85-90%) that Schuyler's current success and sweet happy life will be rudely interrupted by seizures, maybe bad enough to hurt her. Maybe worse than that, even.

So we set ourselves to life with an only child, and that life is rewarding in ways that offset the monster. Schuyler doesn't know how spooky the future is, but even if she did, I can't imagine she'd give a damn. She cheerfully defies expectations, she takes up the fight and she's not complacent, either in school or in her ever-present quest for perfect play. She's living her life turned up to eleven, regardless of my own shortcomings.

I guess that's the other thing that makes people hesitant to talk of babies with us. I know that when I was an expectant father, seeing children with disabilities bothered me, although I would have been ashamed to admit it. I wouldn't have wanted to face that future, and I especially wouldn't have wanted to give much thought to whether or not I was up to the job as a father.

Special needs parenting is a daunting prospect, a sneaking monster that almost no one thinks they'll have to face until it lands on them with both clawed feet. Seeing how things could go down is hard. Wondering how they're going to be even without that possibility is hard enough.

In a world where such conversations would be polite, I would tell future parents the truth as I know it about parenting, even though my life as a father has been so different from most, even from other "shepherds of the broken". My truth is my own, but here it is.

No, I wasn't ready for this, but then, I wasn't ready for any of it. I wasn't ready for Schuyler to turn yellow a few days after she was born, requiring the funky Jedi light blanket on Christmas day to lower her bilirubin levels from their frighteningly high levels. I wasn't ready for her to run headfirst into a shelf at Borders one day and give herself a mild concussion when she was just learning to walk (in that "walk means lurch at high speeds" phase). I certainly wasn't ready to sit up with her in the hospital after her emergency surgery to relieve a painful abscess brought on by a nasty staph infection. It hasn't just been the monster that has snuck up on me.

But here's the thing. I also wasn't ready for her to burst out in loud, wheezing laughter for the first time, in the shadow of the World Trade Center almost a year before it became the saddest place on earth. I wasn't prepared for the first time she noticed my sadness at something and took my hand, kissing the back of it and patting it gently. I wasn't ready to hear "My name is Schuyler" come out of that first primitive box of words two years ago. Nor was I prepared to learn that she knew how to spell her own name (at a time when her teachers believed her to be unreachable) simply because she just started spelling it one day while we were sitting at Barnes & Noble, eating a cookie. And I don't believe Julie was ready to hear Schuyler say "mama" successfully for the first time a few weeks ago. (If she's not thinking about it, it comes out "mama". If she's trying, she trips herself up a little, coming up with "mwa-mwa". And "daddy" is just out of reach for now.)

I wasn't ready for any of this, and new parents just have to accept that they're not ready for any of whatever comes their way, either. Some parents find out the hard way that they shouldn't be parents, and some never realize it at all, living in a little fog of denial. But I think those parents are the exception.

For most new parents, every day is about learning, and while sometimes you'll learn the hard way, those lessons almost never leave a mark. Be prepared to learn from your kid. Be ready to encounter a lot of poo. Accept that while everyone else's saliva is gross, your child's is pure liquid delight. Deal with the concept that a half-chewed McNugget offered to you in the spirit of generosity is a gift that shouldn't be refused. Be ready for lots of scrapes and bruises and mysterious injuries, and have lots of Sesame Street Band-Aids on hand.

And most of all, know that even if you get a child who talks and who does everything in the world exactly right and meets your every expectation (selfish and otherwise), that kid is going to have unfathomable secrets.

Schuyler carries more secrets than most, but every now and then she will share one, and those moments, more than anything else, make my life worth living.

May 10, 2007

Monster taking shape

Schuyler Noelle
Originally uploaded by Citizen Rob.
There's a new post over at Monster Notes, and for a very good reason.

I got my edits back for my book.

I go on about it in jabbery detail over there, so I'll simply say that I am very pleased with them, and I'm getting excited about the finished product that is beginning to take shape. As comfortable as I usually am in being a walking cautionary tale, it looks like this time, things are working out pretty well.

Two other bits of interest to, well, me, anyway. First, the photo you see here is looking like the one that will most likely end up on the cover, which I think is a perfect choice. Secondly, the subtitle issue is shaping up nicely. The leading contender (which I can't share with you just yet, sorry) is both short ond NOT sweet, which is exactly what I hoped for.

I only have a few weeks to get my manuscript into its final fancy pants form, so don't be surprised if I'm a little less present around here for the month of May. (I always say that, but then I never quite go away, do I? You can decide for yourself if that's a good or bad thing...)

Back to work

Schuyler (b&w)
Originally uploaded by Citizen Rob.
(Originally posted at SCHUYLER'S MONSTER.)

I got my edits back.

Other writers keep telling me that this is the hardest time, waiting to see what your editor is going to do to your work. I've been nervous about it, I confess. Another writer friend of mine who was recently published has been telling tales of his editing process, in which massive swaths of text, sometimes whole chapters, had been removed. I was bracing myself for the scalpel, rehearsing my defense of chapters that I feared were not long for this world.

I got a note from the apartment complex office yesterday, saying that I had a package, and when I saw the return address, I knew Santa was here. Bonus: getting to open the package in front of the pretty young ladies working in the office and impress them with my fancy pants authorliness. My favorite among them (yeah, I have a favorite; leave me alone with my wicked old man ways) was actually talking about throwing a book release party for me. Thanks, Santa.

After returning to my apartment (hurriedly so I wouldn't pass out from sucking in my gut much longer), I started reading the letter and bracing myself for the cuts.

Except there weren't any, aside from a few sentences here and there. There were lots of tweaks, some questions and requests for clarifications, requests for more material in a few specific areas, and some legal questions. But no chapters with giant red X's. My original conception of this book is going to be very close to what comes out, almost frighteningly so.

As I dig into the manuscript page by page, making the small changes, I'm learning a lot about my writing. A few things I've realized just in the past 24 hours:

*I begin far too many sentences with the word "and". I'm not stupid; I know it creates incomplete sentences, and that's bad, by golly. But it's always been something I've done, a stylistic choice I made when blogging to give my work a conversational flow. That's fine for the immediacy of online writing, but in a memoir, it had to go. Just deleting them has improved the flow and tone dramatically.

*I am far too vulgar for my own good. Sheila didn't go through like a puritan missionary, striking out all my blue material and replacing it with family-friendly phrasing. What she did was recognize when I needed a strong word and when I was just being lazy. In every case so far that I've replaced an obscenity, it has strengthened the writing. She left the ones I felt I needed without flinching.

*Julie, on the other hand, is not quite as vulgar as I make her sound. Sorry, Julie. I think what happens is that when she gets upset, Julie achieves an eloquence that sticks in my mind, so I tend to quote her in those situations. Those are also the best opportunities for F-bombs, however. The final version of the book will present a much less sailorish version of my lovely bride. (Just so you know, however, the two edits I did to clean up her image a little? Total spin. She really did say the nasty things I originally reported. They just didn't seem so cute on the written page.)

I'm sure there must be some sort of cosmic plan involved in giving two foul-mouthed people like Julie and myself a child who is physically incapable of repeating the off-color words and phrases that occasionally slip out in front of her. (If by "occasionally", you mean "daily".) Lord help us when she starts spelling out words on her device by ear, or starts programming them into it by herself.

If you doubt for a moment that Schuyler's story landed on the desk of exactly the right editor, you should know that when I wrote about Schuyler's favorite movie (King Kong, of course), Sheila corrected my spelling of one character's name and fleshed out some other information as well. Is my editor a King Kong fan, too? THAT, my friends, is Fate at work.

So I'm back to work on the book, happily so, and feeling more confident than ever that hooking up with St. Martin's Press was the best thing that could have possibly happened to this book. I know there are people out there who doubt the value of a good agent or a good editor. For me, however, they've made all the difference.

The photo at the top of this post is looking like the odds-on favorite for the book cover, by the way, and I think that's great. Schuyler wasn't posing for some metaphoric conceptual shot, either. She was laughing at something, I snapped the shot while she giggled behind her hand, and a split second she had moved on. It was only later that I realized what I had captured. It was the luckiest of shots.

May 8, 2007

Monster Gallery

Schuyler had a pretty good day.

She woke up in a good mood and insisted on taking photos of her bus when it pulled up. She took pictures of me, too, as I took pictures of her, and the ridiculousness of it made her laugh. When she climbed aboard the bus, she waved excitedly and blew her kisses to me, unaware of the tiny piece of me that died like it does every time her bus pulls away.

We met with two of her teachers today, the miracle worker who runs her box class and the mainstream first grade teacher who loves our daughter even though I think she's a little frightened by Schuyler's independent streak. She told us today, in the midst of reporting Schuyler's progress, that occasionally "she talks too much in class". Julie actually laughed out loud.

The general feeling of her teachers seemed to be that Schuyler is doing very well in some areas, lags behind in some others (she apparently has inherited a gene from me, the one that both hates and fears math), and can either reach for academic greatness or pull amusing but ultimately useless stunts, depending entirely on her mood.

(These include correctly writing, in her careful, jagged handwriting, the numbers up to 29 before getting off track for a few lines and then simply drawing little squiggles in every box, right up to the last one, where she wrote "100". Or the science question, in which she answered the question "What is the natural resource that covers over 70% of the earth's surface and is required by all living things?", not with the obvious junk science answer, "water", but rather that more controversial scientific theory, "ballet class".)

For the most part, however, she appears to balance that occasional lapse with genuine, true school-nerd enthusiasm. She raises her hand in class, whether or not she knows the answer or has even heard the question yet. Sure, I suppose she could simply be turning into a little kissass, but I think the truth is that she's happy to have a voice of sorts and is desperate to participate in the world around her. She's become excited about her Big Box of Words again, thanks to her ongoing transition to the higher level, and she's starting to show her classmates how to use it on the 84-key setting. Her teachers say she's doing well in school, despite her monster, and she'll be moving on to second grade next fall.

I worry about Schuyler, about the uphill struggle she faces in trying to keep up with the rest of the kids in spite of the huge disadvantage that she has with the BBoW. And let's be clear; it is a remarkable tool for her, it has given her a way to communicate that has changed her life and unlocked a lot of doors for her, but it is also a maddeningly slow way to speak, and that is going to make it very hard for her to function in class. There are time benchmarks that she is supposed to be able to meet according to state guidelines, and they don't lend themselves to augmentative communication. But there are adults who do it, and Schuyler will, too.

I also worry about her social development, particularly how she'll be accepted by her peers. But school seems to be a haven for her in that regard; the neurotypical kids love her and argue over who is going to help her in class. She may still be the equivalent to E.T. to most of them, but we'll take it for now. Perhaps my expectations about mean kids will be proven wrong; they have been so far, I must admit. Grown-ups are often another story, but she doesn't appear to care too much for adult acceptance. We're the dinosaurs. Mean, old and doomed to extinction.

We saw her briefly when we went to the classroom to get some paperwork taken care of, and she was neither embarrassed nor clingy. She said her loud hellos, gave her big, Sumo-style hugs and then went back to her social circle, bragging about how her dad (the Hero of Inappropriate Movie Choices) took her to see Spider-man over the weekend.

When she got out of school, we gave Schuyler a surprise, a hand-crafted little monster that was made for her by an artistic reader. She loved it, playing with it and talking to it all the way home. She kept asking us for its name, and Julie suggested "Paisley", for obvious reasons. Schuyler liked that name, so Monster Paisley was born.

When we got home, I wanted to take a photo of it to put on the book site, and Schuyler eagerly helped. I had her gather the monsters that she'd been given as gifts over the past year or two, and as I took their photo, she kept bringing in even more monsters (along with Jasper, who gets to do whatever he wants, thanks to his role as Unofficial Big Brother).

Schuyler wanted a monster family portrait.

I've taken a lot of portraits, but this one was my favorite so far.

So it goes.

May 3, 2007

Bookedy book book stuff

I've been posting so rarely on my book blog lately that it's probably worth mentioning when there's a new entry over there.

So yeah. There's a new entry over there.

This has been the slow time for book stuff, and really, I'm still nine months away from publication, so that's probably as it should be. I've been writing online for so long, since 1995 if you can believe it, and the worst delays I usually have to deal with involve not having internet access at the precise moment that I want to upload some pearls of wisdom.

(Tonight would be a good example. Massive, nasty Texas storms rolled through last night and knocked out our power for about eight hours. It was cool while the storms were actually moving through; we just sat on the bed and watched the show, waiting for cows and trailer homes to start flying by so we'd know when it was time to hide in the bathtub. Now, it's just boring. Also, it's uncool when the lights and television suddenly come back on at 3am. I think I peed myself.)

So I've been spoiled by the instant gratification of the internet. Adjusting to the glacial pace of the publishing world is probably good for my impatient soul. Having said that, I found out today that I'll be getting my first round of edits back soon, and that's when the real work begins. You know, aside from that whole "writing the book" part.

May 2, 2007

Don't quote me

(Originally posted at SCHUYLER'S MONSTER.)

Okay, so let's say you're working on your book, and there's a favorite song of yours, or a novel by your favorite writer, or some other bit of work that you find both inspirational and relevant in the context of what you're writing. You say to yourself, "Gosh, Self, I think that would make a swell addition to my book!"

I'd like to suggest that you resist the urge. Unless you find you really need those quotes, you might be opening yourself up to a world of frustration.

When I wrote SCHUYLER'S MONSTER, I included a number of quotes, mostly from songs that I liked and have sung to Schuyler over the years. In a few cases, the songs themselves played a part in the story. Including them made sense to me.

Move forward a few months, to about ten minutes ago. I just finished going over my manuscript and removing every single one of those quotes.

I did it for two reasons. The first, and most obvious, is that it is quite simply a gigantic pain in the ass to get permission to use quoted material. I sent out four permission requests (using a form written in Martian Legalese provided by St. Martin's Press), three in order to secure permission to use song lyrics and one for a line of poetry. Of the four, two were ignored outright, at least so far. One artist's manager corresponded with me via email and, after I made a change requested by her legal department AFTER bouncing it off of St. Martin's legal department, agreed to give me the permission but then never actually returned the form.

And then there was the poetry quote. Fifteen words, not even a complete sentence. I sent the form, along with a letter and a business card, to the person in charge of permissions at the big house that published the poet. (I won't say which publisher, except that every time I see their name, I think of The Office.) A few weeks later, he returned it all, even my business card. (In the words of one of my fictional idols, High Fidelity's Rob Gordon, "That is some cold shit.") The reason? He needed more information, things like the publication date, number of pages, territory, print run, and price. At the time, my book was ten months away from publication; I didn't have answers to most of those questions.

My editor was kind enough to provide the answers for me (which was actually pretty cool to find out; you'll laugh, you'll cry, you'll kiss $24.95 goodbye), so I resubmitted the form. (No business card this time, though. Get your own, buddy.) Today I finally got permission. Except of course, they listed my publisher as "Self-published", so I have no idea if it's even valid.

I give up. Keep your fifteen words. It's like trying to negotiate with the Gollum. "My precious!"

I said there were two reasons for losing the quotes. The general pain-in-the-assedness is a good one, to be sure, but perhaps a better one is simply this. If I have faith in my writing (and if a house like St. Martin's is willing to believe and invest in my work then I'd better believe in it, too), then I need to re-evaluate why exactly I feel it necessary to use other people's words to back up my own. I see the value of a quote for color, but when I really looked at the number of quotations I was using (one or two at the beginning, one for each of the three parts, and some material within the text as well), I realized that it was too much. At that point, I'm relying on someone else's words to express what I should be saying myself.

It feels like a rookie mistake, and I'm glad I got it out of my system this early in the process.

I should be getting my first edits back soon. I can't imagine I won't have something to say then. Things are about to start happening in a hurry. I look forward to it with enthusiasm and perhaps just a sprinkling of nausea. You know, the good kind of nausea.