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.

Not available on Netflix

The fam
Originally uploaded by Citizen Rob.

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

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

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

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

2) I stutter like a moron.

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

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

I'll be wearing my fancy brown pants.

"Daddy writes book."
Originally uploaded by Citizen Rob.

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

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

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

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

Octopus Love

Octopus Love
Originally uploaded by Citizen Rob.

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

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

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

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

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

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

"What do you have there?" I asked.

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

"ER-ehn!" she said.

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

"Yeah," she said and then jumped happily.

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

Programming

Red
Originally uploaded by Citizen Rob.

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

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

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

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

"Ah-ee, oo! Eh UH!"

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

"Daddy, look! The FUZZ!"

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

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

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

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

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

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

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

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

"Bye, Fuzz!"

Trailer

(NOTE: UPDATED 7/18)

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

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

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



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

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

Rubber swords

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

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

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

Judges: School Held Autistic Student 'Hostage'

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

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

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

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

(Read more...)

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

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

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

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

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

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

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

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

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

Book Jabber

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Joking. As far as you know.)

The dry cleaner called, my fancy pants are ready.

Bio 8
Originally uploaded by Citizen Rob.

So I get this email just now, from the ever-cool Rachel Kramer Bussel, letting me know that she just added my book to her Amazon wish list.

Huh?

I go to Amazon and look.

And there it is.

Well, there you go.

Schuyler's reality, written in pencil

Animal variations
Originally uploaded by Citizen Rob.

The last post generated a lot of comments and a few questions about Schuyler's future development. I really appreciate those questions, enough so that instead of answering them in my comments, I thought I'd pick one of them and answer it here. Hopefully it'll cover other questions some of you have had or may have as well, although with Schuyler and her monster, there are always more questions.

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Given that she is now able to say "no," how hopeful are you that she will gain more consonants?

"Hopeful" is a tricky word, because some mornings after dreaming of Schuyler talking to me, before I wake up completely, I am entirely hopeful that she'll greet me with a kiss and a "Good morning, Daddy!" Those waking moments are almost happy enough to compensate for the hard reality that lands a few seconds later. Almost, sometimes.

But realistically? Not much has changed in the area of hard consonants, or her ability to use any consonants at all. She has had N and M all along. What she has been unable to do until now was appropriately place them in their proper places in words. She occasionally says "mommy", too, which is new. Until the past six months or so, when she would say "no", it came out as "mo", but she couldn't say "mommy". She had some of the soft consonants, but was unable to process their placement.

Unfortunately, she has no hard consonants and never has. Will she one day be able to form them? Obviously we'd like to hope so, but polymicrogyria is a huge mystery to everyone who has ever studied it or dealt with it. Keep in mind that even though her speech sounds to some as if it is physically impaired, it is in fact entirely a result of her neurological condition. In some ways, that suggests a hopeful future, since there's nothing physically keeping those sounds from being formed. But it also puts the solution in the court of Schuyler's brain, and that brain has never been her best friend.

The brain is a powerful and mysterious organ, the most important but easily the least understood part of the human body. On one hand, when you hear Schuyler's speech and you see how in some ways, it seems so close to normal human speech, the logical question feels like it should be "So why can't she bridge that last bit and eventually speak normally?" That's the late-at-night question, the one that haunts us all.

But when you look at the MRI scans taken four years ago this month and you see and understand just how profoundly affected her brain really is and how much real estate the monster has claimed, the unanswerable question becomes "How did she ever get this far in the first place?" Schuyler has achieved so much to get to where she is that it seems almost unfair to deny her that last step. Like Pinocchio, there seems to be only one wish left to make for her, such a little thing, a trifling wish.

And realistically, from a medical and neurological perspective, one that is very unlikely to come true.

In some ways she's come further than we'd ever dared to hope, which is wonderful. But in order for her to be truly intelligible in her speech, she would have to develop some sounds that she has never made before.

Are we hopeful? Of course. Her achievement now has been in taking sounds she's had all along (soft consonants like M and N) and using them appropriately, and it's not a small achievement at all. But the hard truth is that even just finding the rest of her consonants would be an extraordinary event.

Schuyler's real achievement has not been in beating the odds and defeating her monster, but in sneaking around it and making her own way. It's not that we think she's going to talk one day (although obviously that would be everyone's dream come true; literally, in my case), but that she will continue to make herself understood however she can. I like to think that in her use of inflection and pitch with her actual voice and with her developing skills on her device, she'll continue to develop a voice that may be different from the rest of us but will be both effective and uniquely her own.

I don't believe in miracles, but I beieve in Schuyler.

Schuyler speaks

Snowball
Originally uploaded by Citizen Rob.

Over the weekend, I purchased a cool new microphone so that I can do some promotional book stuff. It has a very funky appearance that caught Schuyler's eye as soon as I set it up, and she was captivated by the sound of her voice as we played around with it.

As we were getting ready to go to her summer program this morning, she pointed to the microphone and then herself and made her little sign for "please". This short recording is what resulted.

I thought I'd share this with you because it occurred to me that while I've shown Schuyler using her Big Box of Words before, I'm not sure if I've ever actually shared what she sounds like when she speaks. I'm not sure you can really understand who she is without hearing her voice.

And yes, you're hearing correctly. She can now say the word "no", at least much of the time. She's already rendered parts of my book obsolete, and I couldn't be happier about that.

You can hear her monster here, how it wipes away her consonants and leaves her largely unintelligible, but I hope you can also hear how hard she tries and how many of her words can become clear through context. Julie and I can understand a great deal of what she says, so perhaps her words aren't as clear to you as they are to me, I can't say. I can't see that forest; I'm perhaps too deeply in love with the trees.

One thing that I hope is obvious to anyone, however, is how clearly she must be hearing her words in her head. More than that, I hope you can feel how much of her vibrant personality comes through in her speech, and how much joy she manages to extract from a world that doesn't easily give much up for her in return.

Schuyler speaks (mp3, 1.3 MB)

Programming note

This isn't going to affect very many people, but I'm busy tweaking the book site over at SchuylersMonster.com, and one of the things I'm going to do soon is get rid of the book blog over there. It doesn't get much traffic, it's off-topic from the rest of the site, which is about the book as it relates to its subject, not its author, and honestly, it's just sort of dull.

The original idea was that I would go there to discuss news about the book itself rather than bore everyone here, but I always ended up either talking about it here or directing you to go read it over there anyway. Perhaps I'll simply try not to be so boring about book stuff when I write about it instead.

Anyway, the only reason I'm even mentioning it here is that I may try to import a few of those posts over here, and if I do, you might get some weird, out-of-chronological-order things show up in your RSS feed or whatever you use to read this. (RSS feeds are a mystery to me. They are like 90% of my household appliances: I use them but have no clue how they work. For all I know, they could be... magic...)

If you're reading this and wondering "Wow, are things in Rob's life really so fascinating that this is all he has to post about?", well, you might just be a very wise person. A smartass, but wise.

It's good to be the king.

When I posted excerpts from the Declaration of Independence the other day, I left out the middle part, the whole "here's what the king did to piss us off" section. In doing so, I left out the two best lines:

He has dissolved Representative Houses repeatedly, for opposing with manly firmness of his invasions on the rights of the people.

and...

He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.

I know. I really need to grow up. Don't think I'm not aware of that.

--

"Okay guys, one more thing, this summer when you're being inundated with all this American bicentennial Fourth Of July brouhaha, don't forget what you're celebrating, and that's the fact that a bunch of slave-owning, aristocratic, white males didn't want to pay their taxes."
-- Dazed & Confused (1993)

The Fourth

When in the Course of human events...
Originally uploaded by Citizen Rob.

In CONGRESS, July 4, 1776.
The unanimous Declaration of the thirteen united States of America,

When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

The Fourth of July can inspire mixed feelings with some, particularly for people like myself who have lost faith in our government and who don't hold up much hope of regaining that faith, even if the White House changes parties in the next election. If anything, a Democratic administration might very well damage our faith even more; I may be appalled at the immorality and shamelessness of the Bush Administration, but I'm never surprised, and I don't reel particularly betrayed. Some people are fond of saying that Bush is not their president, completely missing the point that he decided they weren't his constituents long ago.

And yet for me, Independence Day has a certain magic to it because I still have immense pride in being an American. Fourth century Romans could see the end coming, but that didn't stop them from recognizing what a remarkable achievement their very existence had been to the world. One can love with open eyes; what hope is there for any of us otherwise?

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.

The main reason I love this day so much is simple. Independence Day isn't about the bravery of Minutemen, George Washington on a horse, or the rockets' red glare. It doesn't celebrate the beginning of the Revolutionary War, but rather the signing of the Declaration of Independence. The Fourth of July celebrates nothing less than the power of words to change the world.

The words to the declaration have become so familiar, celebrated in marble and in textbooks, that it's easy to forget just how dangerous and seditious they really were at the time. The men who wrote them and signed their names were outlaws, and the cost to them could have been their very lives. They were writers and thinkers, and the power contained in their words, as well as the clever spin that gave their fellow colonists a deranged king as a villain rather than a faceless parliament, convinced a bunch of farmers and tradesmen to take up arms against the most powerful nation on earth. Those words changed the course of world history.

Guns and bombs and blood and bravery and sacrifice, all set in motion by pen to paper, and by minds at work. At the beginning of almost every world changing event, you'll find someone scribbling furiously, typing without pause, or speaking passionately to a gathering crowd.

Those of us who consider ourselves writers need to remember how our words can move the hearts of our fellow citizens of the world.

We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these united Colonies are, and of Right ought to be Free and Independent States; that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. And for the support of this Declaration, with a firm reliance on the protection of divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.

After the monster, 2003

I unearthed another video, taken during the summer of 2003, maybe a month after Schuyler was diagnosed with polymicrogyria. We drove up to the Magic Wings Butterfly Conservatory and Gardens in Massachusetts and got away from our new monster for an afternoon.

But of course, that's not true, and it was especially untrue at the time, when every little thing in the world seemed to mock us and remind us of how things had chhanged. It was an important event, enough so that I wrote about it in the book.

The thing I remember the most about that trip was that it was the first time I can recall Julie laughing after we received Schuyler's diagnosis.

-----

(excerpt from Schuyler's Monster: A Father's Journey with his Wordless Daughter)

The three of us walked into the main conservatory room and stopped, holding our breaths. We were standing in a greenhouse, warm and full of plants and paths and a koi-filled pond with a burbling waterfall. Of course, there were butterflies, about four thousand of them. They flitted lazily through the air, landing on feeders or leaves or visitors. The visual effect was stunning. Taken one at a time, the butterflies were tranquil. When seen en masse, they became a frenzy of motion, completely silent but suggesting cacophony. We walked slowly down the paths, Julie and I silent in our thoughts as we had been for weeks, and Schuyler wide-eyed and breathless at the sight of so many butterflies.

I watched Julie carefully. I saw the sadness in her eyes beginning to melt away. She carried Schuyler and held her arm out, pointing at some of the impossibly big specimens and hoping one would take advantage of her offered hand and light there. I saw how in this place, maybe the most ethereal place we’d ever been, she wasn’t the mother of a broken child. Schuyler didn’t speak, but neither did we. Neither did anyone here.

We sat down on a bench and watched the butterflies swirl around us. One landed on Julie’s bare shoulder, and she laughed as its feet tickled her skin. A few minutes later, another landed on her forehead. Schuyler stayed still for as long as she could, but eventually she took to following them around as they flew lazily past, stalking one until another caught her attention.

When did I get so serious? I thought as I watched Schuyler and listened to Julie’s laugh. When did I turn into such a sad person?

I walked over to a little bronze fairy sculpture that held a feeder, consisting of a tiny glass bowl and a sponge soaked in sugar water. There were a few butterflies sitting on her hand, and as I held my camera out to try to get as close of a photo as I could, a giant Blue Morpho landed on the back of my hand. He was huge, and yet barely registered any weight at all. I held my breath as he slowly opened and closed his wings. A few seconds later, he took to the air.

I looked down to see Schuyler watching me, a curious little smile on her lips. Neither of us made a sound.

Before the monster, 2002

I used to have a bunch of these available online, but I totally forgot this was out there.

Has it really been five years?

Creative play is not for the weak

Inevitable
Originally uploaded by Citizen Rob.

If you ever wondered what would happen if ballerinas and Tyrannosaurus met in combat, Schuyler has done a little independent research and has an answer.

Schuyler is surprisingly unsentimental when she plays. Her toys are pretty evenly split between girly girl dolls (heavy on groovy Girls, and thankfully moving away from Barbie and her Disney ilk) and dinosaurs, monsters and general animal life. Schuyler loves her dolls, but she also understands the world and how it works well enough to know that if you are given a choice between being a ballerina and a Tyrannosaurus, it's a no brainer.

Schuyler possesses more charm than most people I've met, but I suspect she'd usually rather have big teeth and nasty claws. She's a bit of a realist that way.

How do you like me now? Yeah, that's what I thought.

I talk about it more over at the book site, but briefly, I received a preliminary version of the cover for Schuyler's Monster today. I think it's awesome, neither cutesy sweet nor Grim, Serious Tragedy Dad. And it has an actual visual effect on the cover, a subtle one that I think will give it just the sort of spark and pizzazz that you've probably come to expect from a parenting memoir.

In the book, I describe the impending birth of Schuyler as a mix of joy and "pure, unblinking, soul-freezing, 'boy-I-sure-am-glad-I-wore-my-brown-pants' terror". That's not a bad description of how I'm beginning to feel about this book being published, either.