Purple snowflake

Some things are hard to see when you are standing close to them. The passage of time masks growth and allows you to hold a tiny little baby and barely notice as she grows into an actual large human person thing.

And then you receive her fourth grade school portrait, taken by someone else at a place you never saw, on a day like any other when you put your baby girl on a bus and sent her into a world that sees her as a five foot tall preteen girl, You see the photo, and the person looking back at you is both the most familiar being in the world, and a mysterious stranger.

Schuyler is ten years old. I knew that, of course. But when I look at this photo of a girl who is not a baby and isn't even going to be a child much longer, the reality lands on me in a way that I guess it hadn't before.

In most ways that's no different from any father who has a hard time letting go of his little girl, I suppose. It's a cliche, I know. It's not one I particularly enjoy embodying, mostly because in matters of Schuyler and her well-being, I pride myself on being a fierce advocate for her. It's important, that position, the most important in my life, the one that really matters. I feel like it requires clarity and understanding and focus. Being all mushy-headed and "Aw, my widdle baby is all grown up, waah" feels like an idiotic, cartoonish distraction. I have no desire to be that familiar buffoon dad from any of a hundred forgettable sitcoms. And none of us really has the time for it, either.

As with all things Schuyler, however, it's not that simple. Last summer, I spoke briefly with a doctor and researcher who is familiar with both Schuyler and her monster; indeed, he is one of the world's top experts on disorders like hers. He pointed out how well Schuyler is doing and how unusual her manifestation of polymicrogyria really is. On one hand, her speech is affected, profoundly so. At the same time, she's completely ambulatory, can write and eat with only minor impediments, and appears to be cognitively high-functioning as well. She walks through the world like a perfectly normal little girl her age, and yet she's not like any other.

"I've never seen PMG manifest itself with quite such a narrow focus," he said. "Schuyler is probably unique in the whole world."

I knew that, I've always known that on some level, but to hear it put like that made it even more real. Every kid is different, I know; every child is a snowflake. But as far as that goes, Schuyler is wholly unique, like a purple snowflake.

Being Schuyler's father, then, isn't a job that always corresponds to precedence. She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it. She's like your kid in a lot of ways.

But Schuyler is also a ten year-old girl who has never had a conversation on the telephone with anyone other than her parents; actually, I don't think she's ever dialed a phone in her life. When she writes sentences using her spelling words for school, she composes pieces that work grammatically and convey meaning but also demonstrate that her understanding of language and the world is abstract and different, developed as it has in an internal world mostly her own. Schuyler has never whispered a secret in another little girl's ear. Indeed, she doesn't spend much time with other kids her age outside of school, which breaks my heart. She lives a sheltered life, of necessity, and I can feel how that's beginning to stifle her a little. But the ways out of that are complicated, and they require a level of peer acceptance that I simply can't control.

Schuyler is growing up, and she's doing so in a world that isn't completely sure what to do with her. It scares me, in part for reasons that are just those of any father in the world, but also for some that are literally mine and mine alone. In that respect, I'm a bit of a purple snowflake, too.

A Message from the Foundation for Children with Microcephaly

A special message for all my fellow polymicrogyria peeps and families with other related brain monsters (yo, what up?). This convention is a fantastic opportunity to meet with the top doctors in the field (including the brilliant Dr. William Dobyns; meet him and tell him how much you liked my book, just to see if his face twitches) as well as other families just like yours.

Bonus: I'll be there, so you can finally come punch me in the face if you like. Man, I'm a giver.

-----

To All of Our Special Stars & Their Families,

The Foundation for Children with Microcephaly has recently celebrated their 3rd birthday having official 501(c)(3) nonprofit status. We want to include our families in our celebration by offering Early Bird pricing again to register for our annual convention for three days only!

How it Works:
Download your registration form at www.childrenwithmicro.org/wearenotalone.html - Send in your completed registration form and payment POSTMARKED ON MAY 3, 4, or 5th and receive Early Bird pricing to register for our amazing annual convention. This special pricing can save a family $100 or more! In order to participate and qualify make sure that your envelope is POSTMARKED ON MAY 3, 4, or 5th!

Families who register on or after May 14th cannot be guaranteed an appointment with the world's leading physicians, but can be placed on a waiting list. There are still physician appointments available - send in your registration form to secure your child's doctor appointment!

You too can contribute to making this year's convention bigger and better! Let your local hospitals, doctors offices, & therapists know about FCM and our unique annual convention, "We Are Not Alone". They may know other children diagnosed with Microcephaly, Lissencephaly, Polymicrogyria or other closely related neurological disorders. Refer them to the website so they can let their patients know about our convention. We want this year's convention to be the biggest and best - we don't want any of our families to miss it because they didn't know about it! Thank you for helping us spread the word!

Feel free to call us with any questions or concerns! We still need help organizing the convention - if you have extra time on your hands and can contribute please let us know!

Thank you all for your support! I look forward to meeting you at "We Are Not Alone" - the 3rd Annual Microcephaly Convention! Remember... we also welcome families who have children diagnosed with Lissencephaly, Polymicrogyria and other closely related neurological disorders!

Best Wishes,

Jenni & Kaylee

Jenniffer Lewis
Founder / CEO
Foundation for Children with Microcephaly
Office: 623-476-7494
jenni@childrenwithmicro.org

Talking boxes on the tee-vee!

For those of you interested in AAC technology and the world of people like Schuyler, Samuel Sennott and his brilliant AAC app Proloquo2Go will be featured on The Doctors tomorrow (Friday, April 23).

The program deals specifically with autism, so there's sure to be lots of crazy talk and fighting and people throwing chairs at each other over vaccinations and gluten and alien abductions and all that.

Okay, well, probably not. But I'd watch that show for sure.

Spare the rod, redux

Every time I write about corporal punishment, I get more angry emails and comments than any other topic. Seriously. And keep in mind the number of times I've referred to special needs kids as "broken", or Easter as "Zombie Jesus Day". When I express my highly charged and controversial opinion that folks who incorporate physical violence against their kids into their parenting toolbox might want to rethink that particular approach, I get reactions. Some people like to suggest that I write about it specifically so that I'll get the reactions that I do, feeding off the conflict like some kind of emotional vampire.

Actually, that's not why I do it. I write about it because (and again, this might come across as radical liberal crazy talk) I believe quite strongly that hitting your kids is a somewhat fucked up thing to do.

Anyway, you've heard me talk about it before, so this time, I'll simply link to a story on NPR ("Spanking Leads To More Aggressive Kids", April 12, 2010). The report discusses a new study published by the journal Pediatrics, which showed that kids who were spanked more than twice a month as three-year-olds were considerably more likely to become aggressive five-year-olds than kids who weren't spanked.

So there you go. You may now fire up the "there's nothing wrong with a little swatty-poo on the hiney if it keeps my dear wee ones from running in front of a locomotive" and "I was spanked as a child and I turned out to be a model citizen who only occasionally shoots up a post office" comments, starting... NOW.

Making weird cool

How Schuyler passes the time at conferences
Originally uploaded by Citizen Rob

Despite my past work as an IT guy, it is an undeniable fact that I am not much of a technical person. It's worth noting that I did Mac support in the past, after all, and during the scary year and a half that I had to provide support for both Macs and PCs while at the Yale Med School, I mostly brought people skills to the table. I was pretty bad at the tech side of it, but I worked with nice people who were always ready to help me. So yeah, I was awful. I needed a lot of help.

It would be silly, then, for me to pretend that I had much to add to the tremendous amount written over the past week or so about the new Apple iPad. (I will say that as an ebook reader, I thought it was brilliant, even without digital ink, and I can see now why the Amazon folks have been such babies about the whole thing.) But there's one aspect of change that the iPad presents that I haven't read much about which I do think I can comment on, and that's in the field of assistive technology, specifically alternative communication.

Week before last, Schuyler and I attended an extraordinary AAC workshop at Vanderbilt University's Peabody College in Nashville. During the discussions over the two-day period I was there, it became clear to me that even in the past few years in which I've gone from a pain-in-the-ass parent to a published author and advocate (and yeah, a pain-in-the-ass parent still), the AAC world has changed. The basic concepts and the language approaches have remained constant, but both the technology and the design philosophies have advanced dramatically since 2005, when we first came on board.

In both those areas, I think the iPad has the potential to be a game changer for AAC. More than potential, actually. I think that for ambulatory users like Schuyler (which includes the huge population of individuals with autism, too), the changes being heralded by the iPad are inevitable.

The technical reasons are clear enough. The iPad uses the same touchscreen technology as Schuyler's speech device, so it's familiar. But it also brings a multi-use advantage, it gives her easy access to internet and ebooks and, well, everything else that has been well-documented by all the iPad hype. And that leads directly into something harder to quantify but still wildly important: the social piece.

Shortly after my book came out, we travelled to the American Speech Language Hearing Association's 2008 conference in Chicago, where I had the pleasure of speaking with Richard Ellenson. Richard was a successful ad executive and designer whose own son has severe verbal limitations due to cerebral palsy. When existing speech devices didn't work out for his son, Richard developed one that focused on fast, effective communication. The resulting device, the Tango, changed the way people thought about design and social integration of AAC for young users. The Tango wasn't particularly earth-shattering as a speech device, but its innovative design made it fit seamlessly into a contemporary kid's digital world.

"If you walk around this hall, you'll see a lot of impressive and wonderful innovation," Richard said to me at the ASHA exhibit hall. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"

AAC developers have been figuring that out. Schuyler's current device, her beloved Pinkessa, is a good example of the principle, and her enthusiasm for her device usage jumped considerably when she got it. But the iPad takes that social integration piece and marries it to a leap in technology and information access and, yes, to COOL. To you and me, cool is a pleasant luxury. To kids with disabilities, cool is elusive, and a powerful motivator.

If you know anything at all about AAC, you're aware that other big thinkers are way ahead of the game. One innovator I met in Chicago on that same trip is Samuel Sennott, and we've remained friends ever since. Sam developed an AAC app for the iPhone and iPod Touch called Proloquo2Go, and even when it was first released, it was clear that when the iPad came out, this app would be a natural fit. The moment the first iPad was sold, Samuel was ready to turn it into a Big Box of Words.

Schuyler's been playing around with Proloquo2Go, and she's shown some intuitive aptitude for it. We're all about giving her different and multiple options for communication, and we have been all along, even before we found AAC. Proloquo2Go may very well become one of the tools she uses regularly. But after five years with Schuyler's Big Box of Words and then Pinkessa, we remain deeply committed to the Prentke Romich Company and to Unity, the Minspeak-based language system that their devices run and which, I believe, gave Schuyler her chance at the kind of life where her monster doesn't get to call the shots and write her story for her.

So if I woke up tomorrow and found myself suddenly running PRC, the very first thing I'd do would be to develop an app for the iPad that would run Unity. I'd sell it on iTunes, and I wouldn't sell it cheaply. I'd do this because I would know that even if I sold it for hundreds of dollars, people would buy it, gratefully. Not every user, certainly, or even most of them. PRC's devices facilitate use by just about anyone, and I suspect that many of their users, perhaps most of them, are not ambulatory enough to use a iPad. Schuyler's device is ready to be used with a wheelchair mount, a head switch, an eye gaze system, or any other number of facilitations for varying degrees of disability. Companies like PRC will continue to make and sell their amazing devices because they are changing the lives of people every day, and giving them voices.

One day, and perhaps not that long from now, those users will want integrated devices, too. PRC already makes a speech device/PC hybrid, and I suspect other manufacturers do as well. But as of now, for the users who are ambulatory and capable of using a device like the iPad, there are suddenly options, not just to communicate and to be able to afford an AAC-ready device without third party funding, but also to join the rest of the world in using some very cool technology and subsequently being, in a tangible way, part of the very cool crowd.

Trust me, that option for coolness means more to people like Schuyler than it does to you and me.

Twenty years

Undated: My father
Originally uploaded by Citizen Rob

My father died twenty years ago today.

It's strange to think about it now, especially as I hurriedly run around packing for a trip today. I used to be acutely aware of this date every year. For the first few years, I would actually make the drive out to Robert Lee, Texas, thenothing little West Texas town where he's buried. It's been a long time since I've been out there, though. After I moved away from Texas, I think in some ways I moved away from some of my grief as well. It's one of those boxes I never entirely unpacked once I returned.

Even now, I'm not sure that "grief" is the right word. We had a complicated relationship, to put it mildly. When he died, my father left a lot of family strife and unanswered questions; he suffered a massive heart aneurysm and was almost certainly dead before he hit the ground. We were all subsequently denied any sort of dramatic, confessional death bed scene, but honestly, I don't know that it would have been any easier if he'd lingered. My father wasn't very good at expressing his emotions, and he was especially bad at processing guilt. I suppose in some ways, I am, too.

I could write so much about my father, but I don't think I'm even going to try today. I'll simply say that I'm not sure that I miss him exactly, but I miss having the feeling and the possibility that there might be a day in the future where he and I could figure things out, and I might know for certain, in a way that I absolutely don't know now and maybe never have known in my life, whether or not my father loved me.

If I only get one thing right with Schuyler, it will be that she will never have to wonder such a thing.

Summer Monster Killers Club

As part of my fancy pants authority duties, I serve on the Board of Trustees for the Foundation for Children with Microcephaly. This makes more sense once you know that Microcephaly and Polymicrogyria are closely related neurological conditions. In fact, the Foundation's mission has been expanded to encompass other related disorders. Sort of a brain monster family reunion.

Anyway, as part of my work on the board, I've been sending out the following email. It occurred to me that the kind of sponsorship that the Foundation is looking for might be of interest to people reading here, rather than just corporations.

This is a good cause, a VERY good cause, and if it sounds like something you think you might be interested in, I hope you'll email me.

---

My name is Robert Rummel-Hudson, and I'm the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). I'm also a member of the Board of Trustees for the Foundation for Children with Microcephaly, a nonprofit organization dedicated to helping children who have been diagnosed with Microcephaly (and other closely-related neurological disorders such as Lissencephaly and Polymicrogyria) to progress, thrive and succeed in life. The organization helps families acquire necessities and services for their children, and is devoted to raising awareness of these under-recognized disorders and participating in the research that may one day bring relief to these children.

Last summer, I was honored to speak on the subject of Augmentative and Alternative Communication at the 2nd Annual Microcephaly Convention. I've presented at a number of different disability and assistive technology conferences in the past several years, but none has affected me quite so deeply as this one. The families I met changed my perspective on my own work and left me filled with a renewed purpose. When I was asked to join the Board of Trustees, I accepted immediately.

The Microcephaly Convention has served as more than a place for families to meet and find support and empathy. Each summer, the leading doctors and researchers in the fields of neurological genetic disorders meet with these families, giving support and often providing answers and insights that have eluded them for years. It presents a unique opportunity for families of children with these neurological disorders. The Foundation for Children with Microcephaly is the only 501(c)(3) nonprofit organization in the United States dedicated to helping children and adults diagnosed with Microcephaly, Polymicrogyria, Lissencephaly and other related neurological disorders

As a nonprofit organization, the Foundation for Children with Microcephaly depends on the generosity of public, private and corporate contributions. I hope that you will recognize the importance of the work being done by the Foundation for Children with Microcephaly and will be interested in helping to sponsor this summer's convention. A financial sponsorship from your company will make a tremendous difference in the lives of families of children afflicted with these neurological disorders.

For the past two summers, this convention has been organized as a labor of love by families who themselves have searched for answers and support. In my own advocacy, I haven't seen anything quite like it, and I hope you'll choose to be a part of our work. Please take a look at the website (www.childrenwithmicro.org) to learn more about the Foundation.

Thank you for your time. I look forward to hearing from you, and I hope you'll choose to join our team.

Robert Rummel-Hudson
Trustee, Foundation for Children with Microcephaly
www.childrenwithmicro.org

New Hopeful Parents post

My monthly post is up over at Hopeful Parents.

I promise, I'm going to lighten up soon.

Mean: A Play in Two Acts

Flygirl
Originally uploaded by Citizen Rob

ACT I

Julie picks up Schuyler from school. Schuyler is in a very sad mood, not making eye contact and seeming to be on the verge of tears.

Julie: Schuyler, what's wrong?

Schuyler: I'm sad.

Julie: Why are you sad?

Schuyler: Because you think I'm a loser.

Julie: No I don't! Schuyler, where did you hear that word?

Schuyler: Jackie called me a loser today.

(Jackie is a girl in Schuyler's class who has said things about her before, including the worst thing that you can say to Schuyler, who has the biggest heart in the entire world: "You're not my friend.")

---

Later, talking to Schuyler about the incident.

Rob: Did Jackie call you a loser at school?

Schuyler (sadly): Yeah.

Rob: You know you're not a loser, don't you?

Schuyler: Yes, Daddy.

Rob: We're going to Nashville in a couple of weeks so that a bunch of really smart people can hear all about you and how you use Pinkessa to talk. Do you think they want to come learn about you and meet you because they think you're a loser?

Schuyler: No.

Rob: No, they think you're the coolest, and so do I. So does anyone who matters. Do you think Jackie's opinion matters? It doesn't. She's just trying to be mean. Anyone can say mean things. Don't let it bother you next time.

Schuyler pauses and smiles, then she waves her hand in front of her face and laughs.

Rob: What? She smells?

Schuyler laughs and nods.

Rob: What does she smell like?

Schuyler points at her ass and laughs hard.

Rob: She smells like butt? Like a monkey butt?

Schuyler: Yeah!

We get Pinkessa so Schuyler can tell me, "Jackie smells like a monkey's butthole." I help her with the spelling. I'm not sure if this makes me a good or terrible father. Julie looks at me disapprovingly.

Julie: You're going to get her in trouble.

Rob: If she gets sent home for saying something, I'll punish her with ice cream.

Schuyler returns to school the next day, and for the rest of the week. She does not tell Jackie that she smells like a monkey's butthole. Sometimes I think she really does get when I'm kidding.

END ACT ONE

---

ACT TWO

Julie takes Schuyler to see a movie that they both want to see, but which I think sounds like the kind of thing that Jack Bauer would show captive terrorists to tell him where the bomb is hidden, so I pass. While standing in line, Schuyler sees two girls, one of whom she knows from school. The mother of the girl also seems to know Schuyler, or at least who she is, and tries to engage her with complicated questions before chatting up Julie.

As they talk, Julie hears the girl from Schuyler's school talking to her friend, who attends a school in Frisco, not Plano.

Plano Girl (giggling to her friend): Watch this. (to Schuyler) Hey, Schuyler! Say something! Talk for us!

When Schuyler says something, the girl laughs at her. The Frisco girl doesn't laugh, to her credit, so the Plano girl says it again. This time the girl's mother hears her.

Plano Mom: That's enough of that!

Julie excuses herself and pulls Schuyler away. After they enter the theater, Schuyler sees her "friend" sitting a few rows down and tells Julie that she wants to sit with them.

Julie: No, Schuyler. They came to have an afternoon together, and they didn't invite us to join them. We don't invite ourselves to other people's get-togethers. That's not polite.

She neglects to mention the fact that the little girl is horrible.

Schuyler protests before slumping down in her seat in a full-blown sulk. Finally she looks at Julie with a frown.

Schuyler: You're mean.

Julie: I know, I'm sorry.

Julie doesn't tell Schuyler the truth, that she's not mean, but rather she's protecting her from a mean girl, another one, and just one of the many who will come along in the future. Schuyler is too innocent to recognize that the girl was being mean to her, and Julie would like to keep it that way forever.

Which is, of course, impossible. But we try. God knows we try, knowing that we'll lose one day. Because when a girl calls Schuyler a loser, it breaks her heart. But when a kid mocks Schuyler because of her monster and she doesn't even see it, and still thinks the girl is her friend, well, when that happens, ours are the hearts that break.

Schuyler will figure it out soon enough. And then there'll be broken hearts enough to go around. Plenty for everyone.

END ACT TWO

Nashville stalkers, get your chloroform ready

Augmentative and Alternative Communication (AAC)

Workshop at Vanderbilt University

Nashville, Tennessee

Presentation: Friday, March 26, 2010, 6 - 7:30 p.m.

A Parent’s Journey with AAC

Location: Mayborn Room 204, Peabody College

Keynote Speaker: Robert Rummel-Hudson

Author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter

Open to everyone. No fee. Registration required. May attend presentation without attending Saturday’s Workshop.

• 6:00-6:05 - Welcome
• 6:05-6:45 - Robert’s journey
• 6:45-7:25 - Questions
• 7:25-7:30 - Closing remarks

-----

Workshop: Saturday, March 27, 2010, 9 a.m. - 4:30 p.m.

We Dance, We Sing, We Do All Kinds of Things | Using Assistive Technology with Young Children with Multiple Disabilities

Location: Room 8380 Medical Center East, South Tower, Vanderbilt Bill Wilkerson Center

Karen Casey, M.S., CCC-SLP (over 25 years of experience with assistive technology)

This workshop will cover a wide range of strategies and easy-to-use communication systems, including low to high assistive technology options, designed to increase communication opportunities for children with multiple disabilities.

For speech-language pathologists, special educators, other professionals in related fields, students, parents, and family members. * May attend workshop without attending Friday’s presentation. This workshop will be offered for .6 ASHA CEU’s (intermediate level; professional area).

Early Bird Registration (by March 15): $175 professionals, $50 students/parents, Additional $25 for late registration. $125 Group Rate for 2 or more persons from the same agency or organization. * Workshop fee includes: lunch/breaks, two CDs of instructional resources, and make-and-take materials.

More information...

Tomorrow Monsters

Schuyler
Originally uploaded by Citizen Rob

There's an issue that has been lurking in the future, like so many of Schuyler's do.

Julie and I worry about the future a great deal with Schuyler, and we always have. Part of that fear experience is just one of the joys of parenthood, I suspect. As watchers and protectors of our children, we're always waiting, always watching for the next Big Bad Thing that will step out of the bushes and harm our living, walking hearts. That's what children are, I've been told, they are our hearts set free into Life, walking around and challenging this grand rough world to do its very worst. And as parents, we watch helplessly, knowing that if the worst happens, it's our hearts that will die, too. It's the part of parenting that no one explains beforehand very well, because it's hard to talk about, and besides, you wouldn't understand anyway. You get it only when your own chaotic heart takes reckless flight in dirty tennis shoes.

So the future. Schuyler's future isn't the bleak thing we were led to believe it would be, by doctors spinning worst case scenarios and teachers afraid to admit that they didn't know what they were talking about and afraid to offer hope instead of fear. Schuyler's present is good. It's not perfect, but it's better than we thought it would ever be, and certainly better than a lot of broken children, maybe even most of them. Schuyler's future is crammed with promise, but it's a murky thing that neither I not Julie nor anyone else can really see.

So, bereft of concrete obstacles, we identify future monsters instead.

One of the scariest of those future monsters is middle school.

Well, I think we all remember middle school. I actually attended junior high school, grades 7 through 9, before ending up in high school for the last three years, so my memories are a little different, but still. I also taught trombone students for a long time, mostly middle school, and the thing I remember the most is how weird they all were. It's a wild age, when kids actually start to become the people they'll be for the rest of their lives, but they haven't yet been beaten into the grooves and the niches and the cliques that high school enforces. They are weird kids, and they're just starting to figure that out, so it's a really interesting but dangerous time for them.

We've been fearing middle school, in part for that reason, because even among the weird kids, Schuyler brings a lot of extra weird to the table. It's not a good age to suddenly be different. Just the thought of it makes me a little sick to my stomach.

The greater uncertainty for us, however, has been of how exactly Schuyler's AAC class presence was going to extend into middle school and high school. That's been the plan for a while now, according to her school. As her pilot class progressed through the system, the AAC program would grow with them, always giving them a home base of support, all the way through graduation. Our biggest concern has always been how this plan was going to be implemented exactly.

Today, we got an answer. It won't be.

When Schuyler finishes fifth grade (next year, unless she suffers some catastrophic academic failure), she will leave her school and her AAC class and will start middle school at her home campus. She will do so without an AAC class to go to, without (as far as I know) any permanent place outside of her mainstream classes where she'll be supported by anyone trained in assistive technology. An assistive technology professional, one of Schuyler's former teachers most likely, will travel from campus to campus in this huge school district, and that will be it. As is the case with so many mainstreaming situations around the country, in slightly less than a year and a half, Schuyler will learn to swim, or she will sink.

And suddenly, the future has a monster whom we can see much more clearly. And it's bigger than we thought it would be.

I'm going to be honest here. We're disappointed, bitterly disappointed, but we're not entirely blindsided by this decision. When the original plan was presented, I wondered at the time whether it was one that was going to be realistic. From the school district's perspective, they are continuing to support a program that gets to these kids at the most crucial age, and they're right. Furthermore, if I'm going to continue to beat the drum on behalf of inclusion, then this is where I get to put my money where my mouth is, I guess. And I know, all too well, that receiving even this much AAC support and instruction is wildly beyond what the vast majority of these kids receive in other schools and other communities. The Plano schools have gone above and beyond for Schuyler and her friends, and I will never diminish that or lose sight of exactly how much of a difference it has made in her life. We are extremely grateful for everything they've done and continue to do for Schuyler, and we're hopeful that the Plano school district's commitment to our daughter and her friends will continue to be strong.

But the future just got murky again, and that makes me feel sick inside. For the past ten years, and particularly since the diagnosis, Julie and I have worked hard to provide Schuyler with consistency and support. We've both sacrificed more than perhaps anyone realizes in order to make that happen. And yet, I have failed Schuyler, time and time again. Sometimes in small ways, and other times in monumental, broad strokes of stupidity and selfishness. I have considered acts of extreme selfishness and pain and betrayal that have left me now feeling evil and haunted and guilt-ridden. I've been both a good and a horrible father, but I try to do my best, and when I open my eyes and truly see what's at stake, I like to think that I find the path again, even if I've wandered far into the woods.

Julie and I have given a lot, maybe given our all, in order to give Schuyler a shot, and when we moved to Plano, we thought (perhaps foolishly, as all parents of the broken do from time to time) that we'd found the answer, and that it would sustain her through her school years. Now, I just don't know. Julie asked me tonight if this meant that we might have to move again. I said I didn't know. Honestly, I don't know where we'd go if middle school turns out to be a disaster for Schuyler. Plano schools are among the best in the country, particularly for special education. If they can't take care of her here, then who can?

When I spoke to Schuyler's principal today (a very nice woman who has been among Schuyler's greatest supporters, and who did not seem to enjoy this conversation one bit), she said that Schuyler would have a couple of options. She could finish out fifth grade at her current school in her current program and then start sixth grade with a whole new bunch of kids who haven't spent the past few years getting to know her and who wouldn't immediately understand her very unique set of circumstances. Or she could transition early to her home elementary next year so that she'd get to know some of the kids who would then join her in middle school the next year. That last option sounds sort of awful to me; not only would she lose a year of AAC instruction, but she'd then have to experience changing schools twice in two years.

I asked if it would be possible for Schuyler to transfer to the middle school that her current elementary feeds into so that at least she'd have the same group of friends. It's a possibility, but we'll have to apply for permission to do that, and the middle school may already be closed to transfers. She'd no longer be eligible for the transportation that she now receives, but we could deal with that. The sooner we can walk away from the stigma of the short bus is probably the better for her.

None of the answers feel adequate. Selfishly, I want the school to make good on its admittedly far-fetched promise to take care of Schuyler and her classmates, to give them a place to continue their AAC training, of course, but also to give them a home perch to fly back to when things get daunting. Because they WILL be daunting. That much is certain.

I believe in Schuyler more than I believe in God or Love, but I believe in monsters, too.

Not less

I've posted another essay on Hopeful Parents. This time I share some thoughts on the new HBO film Temple Grandin.

So, you know, go check it out if you are so inclined.

A Fat

Okay, Amazon. Now you're just being rude.

Dispatch from Beleaguered Tokyo

First of all, the CEO of Macmillan, John Sargent, has responded to the Amazon brouhaha. (When I see that word "brouhaha", I imagine it spoken with rolled R's and bugged eyes.) So the rumble appears to be on. (More good observations from John Scalzi, Cory Doctorow, the L.A. Times, and Scalzi again.)

For those of you who aren't following this, here's the quick and dirty version. (Not actually all that dirty, sorry.) Along with a number of other houses, Macmillan (whose imprints include Straus & Giroux, Tor, and my publisher, St. Martin's Press) has been pushing for Amazon to change their pricing structure for electronic books from a flat charge of $9.99 (an artificial price point, I believe, intended to drive sales of its electronic reader, the Kindle) to one set by the publishers themselves, giving them the option of charging up to $15. Amazon's response has been along the lines of "Or what? You're going to take your business to some other gigantic, popular company and THEIR ebook reader? Let us know how that works out for you."

This week, you might have heard that Apple released the awkwardly-named but undeniably snazzy iPad, and along with it announced their new iBooks store. In doing so, they signed agreements with a number of the biggest publishing houses, including Macmillan. Those agreements apparently grant these publishers more pricing flexibility. The New York Times picks it up from there:

Macmillan offered Amazon the opportunity to buy Kindle editions on the same “agency” model as it will sell e-books to Apple for the iPad. Under this model, the publisher sets the consumer book price and takes 70 percent of each sale, leaving 30 percent to the retailer. Macmillan said Amazon could continue to buy e-books under its current wholesale model, paying the publisher 50 percent of the hardcover list price while pricing the e-book at any level Amazon chooses, but that Macmillan would delay those e-book editions by seven months after hardcover release. Amazon’s removal of Macmillan titles on Friday appears to be a direct reaction to that.

That's right. On Friday, Amazon pulled every single title published by Macmillan, including mine, from its site. The titles are still listed, but there's no way to buy them except via third party vendors. (This only applies to Amazon's US site, and also doesn't appear to include overstock sales like the one I mentioned the other day.)

As to why Amazon is doing this, especially given the fact that the removal doesn't just affect Kindle editions but all print properties as well, I can only assume that the company is operating under a business model best encapsulated as "No, fuck YOU."

I'm not going to pretend that all has been smooth sailing between St. Martin's Press and myself where ebooks are concerned. A number of you have written to me asking why Schuyler's Monster was only available for the Kindle for a brief time before being removed. Apparently the original scan from the company was fuzzy and it was pulled for quality control. But despite my repeated titty-baby whining, St. Martin's has been slow to replace that scan, and at this time, Schuyler's Monster is unavailable as an electronic book in any format. I've been extremely frustrated by this over the past several months, and so I'm not exactly filled with unconditional love for SMP's digital division at the moment. That's just my anecdotal experience, but it's the only one I have to go on.

But in this clash of the Big Companies, only one of them is intentionally and cynically screwing with the livelihood of authors. Only Amazon has shown such callous disregard for the writers who make their whole industry possible. I've twice visited the offices of St. Martin's Press, and it's not some fancy shining hub of cold, calculated commerce. Up on the top floors of the Flatiron Building in New York, you'll find offices full of manuscripts piled on every available flat surface, and you'll also find creative people (mostly young) who run around frantically, making books happen. And even in the face of the scary-boo economic factors crippling the industry, these folks are giddy about their work. They're book nerds, operating on a very thin margin, and every author I've ever talked to who has been published by them has expressed the same thing, and it's the same thing I've felt as well. Macmillan takes care of its people.

This whole situation just stinks, and I have no idea how long it'll last. Not long, I suspect, hopefully just a few days just to see if Macmillan blinks. I hope they don't. And I hope they're not the only publisher to demand a little free market behavior from Amazon, either. Amazon is a great company and God knows a huge number of the trees I've killed have gone through their warehouses on the way to readers like you. (Eh, trees. Fuck 'em.) But I believe Amazon is acting like a petulant bully in this instance, and the people who are being hurt most directly are consumers and authors. Being both, I don't like it, not one bit.

This would be a much worse situation for me personally if my book had only recently been released, and I recognize that. But still, I can tell you what it feels like, being the author of one of the books that just lost one of its largest outlets for sales, all because two big companies are squabbling over money and the future of the ebook trade.

I feel like a citizen of Tokyo, watching Godzilla and some other monster fighting it out in the streets of my city.

Even if my monster wins, my house still gets squashed.

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UPDATE: Blink! My favorite part is this seriously weird quote from Amazon:

"We want you to know that ultimately, however, we will have to capitulate and accept Macmillan's terms because Macmillan has a monopoly over their own titles, and we will want to offer them to you even at prices we believe are needlessly high for e-books."

Um, I believe the word you're looking for is "copyright".

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UPDATE REDUX: John Scalzi sums it all up nicely.

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UPDATE CUBED: I'm linking to Scalzi a lot these days; he's been particularly on-target with this issue lately. Today, he looks out for the citizens of my metaphorical Tokyo. Thank you, John. Your fellow authors appreciate it.

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UPDATE FINALE: After exactly one week, Amazon has gotten around to restoring the links to Macmillan titles, including Schuyler's Monster. I'm guessing it'll be at least that long before I return the favor. I'll put it on my To Do list. No, really.

I bleed the people.

"I bleed the people."
Originally uploaded by Citizen Rob

Schuyler was writing sentences using spelling words for a homework assignment the other day. I popped by her computer to see how she was doing. One of the words she had to use was "bleed". She had a sentence on the screen.

"I bleed the people."

When I asked her what she meant, she just laughed, and kept laughing as I tried in vain to get an answer. She eventually changed it to something about bleeding when she lost a tooth, but I don't know, when your little girl writes "I bleed the people", it's hard to let that go. When she embarks on her future as a brutal despot, don't say I didn't warn you.

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Schuyler has been such a constant presence in my life for the past ten years that it's hard to remember what my life without her was like. It's strange, thinking that she never heard me play trombone in a performance (something that she should perhaps be grateful for), or that she never met my first wife (again, something... well, you know). The first thirty-two years of my life had no Schuyler in them, and in all the most significant ways, I feel like they were preparatory years.

But in the past ten years, Schuyler has changed, a lot. People who meet her now see a completely different person than the ethereal, sweet but disconnected little girl I described in my book. They probably think I'm a crappy writer, and they may very well be right about that, but it's not because I didn't describe her accurately at the time. She's changed dramatically in the last three or four years. She's growing up, and becoming the person she's going to be.

She's changing still.

Those of you who have met Schuyler and interacted with her for short periods of time might not believe this. Those of you who have spent a little more time with her may have an inkling of what I'm talking about. She's always been a happy kid, friendly to a fault and energetic to the point of manic, but for the past few months, maybe as long as half a year or so, Schuyler has had occasional but intense lows. She'll start crying for no apparent reason, particularly when I'm away on trips or at work late. She's always tested Julie in different ways from myself, and I suppose that's normal. But in these past few months, she's been sad, sometimes hysterically so. Recently, I've gotten to witness more of it myself, rather than just hearing about it.

Schuyler just turned ten; a few weeks ago, we bought her first training bras. (Yeah, you can imagine how well I took that particular milestone.) As her behavior became more erratic, I think we chalked it up to normal, hormonal changes. But in the past couple of months, and particular the past few weeks, the cloud over Schuyler's mood has darkened. Her emotional state, previously unflappable, has become more tenuous, even sensitive. Perhaps this is what most of you have dealt with in your own children, but it's new to us.

Sometimes when we asked her why she was crying, she would bring up some injury or slight from a classmate, but often these were from days before. I don't believe she was trying to hide anything from us. I think that she was grasping for an answer, trying to reach back to something that made sense, to herself as much as to us.

I don't know why it never occurred to me, of all people, that something a little harder than pre-adolescence might have been at work. The little red flag didn't pop up until I asked her why she was so sad, and she answered "I don't know!" Not defiantly or dismissively, but with real confusion, and a look in her eyes that seemed to ask me what exactly was going on inside her heart.

That's the answer she gives now, when she doesn't have an injury to fall back on. Earlier this week, after hitting her funny bone at school and crying on and off for the rest of the evening, she started off by saying her elbow hurt, but after a few hours and no apparent physical damage, she simply answered "I don't know."

"Schuyler," I asked, once it had occurred to me, stupidly late but finally, "Do you ever feel sad and you don't know why?"

She looked at me, quickly and wide-eyed, as if I'd said something wise, something that had been in front of her all along but had somehow escaped her own realization. "Yes, Daddy."

"I do, too," I said. "It's okay to feel sad. And you can tell me any time it happens, okay? You don't need a reason. I'll always listen to you when you're sad."

She's been hugging harder than usual lately, too.

I don't know much about hormones and little kids, and certainly not little girls. I think I'm probably overreacting, which is my fatherly duty in all things, of course. I do know that when I was Schuyler's age, I'd first begun to experience the dark clouds that came to visit me with greater intensity as I got older. I didn't know what it meant at the time, and none of my own family seemed to notice, which surprises me a little, in retrospect, since my own grandmother killed herself a few years before I was born.

But then, it took me a long time to accept the possibility that Schuyler might just possess one of my own monsters for herself, and that it might just be waking up.

So yeah, I have no idea if Schuyler's simply like every other kid in the world her age, and maybe she's just growing up and living more fully in a world that's not always very kind or easy to understand. It's hard, though, watching her find such emotional valleys now and again, especially seeing as how they contrast so sharply with the genuine highs that have defined her throughout the first decade of her life.

I've been reading a great deal over the past couple of days about childhood depression, and while it's easy to scare myself with the lists of symptoms, I also have to admit that they sound pretty similar to the normal behaviors of little kids who are standing on the edge of adolescence, staring into a future they can't possibly understand. I read about the circumstances in a kid's world than can trigger childhood depression, and they sound an awful lot like Life.

But I have to admit, when I read about depression being caused in part by physiological stressors and genetic vulnerabilities and, God, difficulties in successfully communicating, I feel a real squeeze of fear in the very center of my chest.

I've struggled to understand Schuyler's monster for seven years now. Now I'm facing the glimmer of a possibility that she might be carrying another monster as well, one that I may have given to her and which I understand all too well.

Understanding it doesn't help. I don't know how to protect her from this monster, either.

If you don't like me, she's probably the one to blame.

Happy birthday, Mom.

Hopeful Me

Well, given my previous post, this may seem sort of ironic, but as of today, I am now writing once a month over at Hopeful Parents, a site for families of kids with disabilities. My first post may seem sort of familiar, since it's adapted from something I wrote a few months ago. But it's an issue that's about to raise its ugly head again, just in time for it to get kicked in the mouth by my size thirteens. Because I'm seriously not in the mood to fight this fight again.

Anyway, go check it out. So far, no one's gotten too crazy in the comments, beyond a little bit of passive-aggressive "if you REALLY loved your kid..." stuff. But it's early yet.

On things which I really should let go without comment, but you know how I am

"The world breaks everyone, and afterward, some are strong at the broken places."

-- Ernest Hemingway

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Yeah, I saw it.

It didn't call me out, not by name. But the language felt familiar. The author is someone with whom I've corresponded a few times, and when I went back and looked at her emails, I discovered why her essay triggered a sense of deja vu. She'd said almost exactly the same thing to me in email, in response to my own use of the word "broken".

But that was almost two years ago.

I don't know what triggered this essay, and really, it doesn't matter. When you're the parent of a child with a disability, your life becomes a cycle of routine and unpredictability. It makes for a curious emotional mix, in which you find yourself struggling not to fall into a rut and at the same time struggling to avoid being knocked off the rails by the unexpected. (Ruts and rails. I'm mixing metaphors, sorry.) I don't know what brought this topic back up again, but it's obviously just as real for her now as it was two years ago, and I understand that completely.

I guess what I'm trying to say is that I'd be a hypocrite if I were to suggest that Michelle O'Neil is somehow wrong to speak her opinion about my word usage. There seems to be a perception among some that the disability community has (or should have) a universal approach to things like language, but nothing could be further from the truth. I have many issues with People First Language; I personally can't imagine anything worse than asking a child to "take ownership" of their disability while somehow believing that they can do so without also taking responsibility for it. But one thing that truly pets my fur backwards is the idea that People First Language MUST become standard usage within the disability community, professional and family alike. We don't all approach disability in the same way, and Michelle O'Neil's opinion about my use of language is as valid as anyone's. Well, of course it is.

At the same time, however, there was one part of her essay that troubled me.

The term "broken" continues to float around a bit in special needs circles. It peaks my curiosity, but no longer stings.

At best it is an attempt at conveying the struggle and challenges a special needs child faces. In no way do I dismiss those challenges. Our family faces plenty of challenges, but some children and parents deal with more than I can ever imagine and I mean no disrespect. At worst, however, the use of the term "broken" in reference to a child with special needs is a publicity stunt aimed toward offending.

I appreciate that she means no disrespect, but I guess I should be clear about something now. There are particular aspects of my writing that exist to get your attention. And when I feel like someone needs to be called out, I don't hesitate to do so. (Hi, Bernie Goldberg.) But where disabilities and parenting are concerned, I'm not sure exactly what I would hope to accomplish by intentionally offending other parents, people whose philosophies and approaches and sources of inspiration may differ from mine, but whose struggles and pain are all too familiar.

When I put Schuyler on a t-shirt or program Pinkessa to shill for A&W Root Beer, then you'll have your publicity stunt. (Note to A&W: Call me.)

* * *
"What will Schuyler think when she reads that you believe she's broken?" I'm asked, and the implication is that Schuyler will be hurt and insulted by the word. But to me, the question itself is offensive. It suggests that Schuyler is simple enough and unaware enough that she'll never know the difference, if only the people around her choose the right words.

Schuyler knows. When a TSA agent sarcastically asked her if she could talk, she simply answered "No," without sadness or regret or hurt. She knows, and she compensates, and while her lack of anxiety or sadness about her condition may not last forever, her understanding of exactly who and what she is and what she can be will always be her greatest strength.

"I can't talk," Schuyler says simply, her hand on her throat, but even as the listener begins to make that face, the one etched in unwanted pity, Schuyler is reaching for Pinkessa, impatiently waiting for it to power up so she can tell you that her name is Schuyler, and she's ten years old, and she has a dog named Max and a hamster named Swee. She's broken, and she knows it, but she's got a hell of a fix for that, and she's waiting for you to be impressed. Which you should be.

Broken things of little value are discarded. Broken things of worth are made whole again. Despite all my self-doubts, I continue to flatter myself enough to believe that come what may, Schuyler will always know in which of those categories she belongs.

"I am ten years old."

Snow Day, 2003

After it snowed the other day, I went looking for video to show Schuyler what we used to call REAL snow. I knew I had some boring old holiday videos I could show her, but in addition, I found this ridiculous little thing I made in February 2003, on a day when we were snowed in with nothing much to do. (That much is clear.)

Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.

A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.

(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)

As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"

Xmas 2009: Surprise Snow, Purple Guitars and Flying Monsters

Santa's detritus

Christmas morning hair

White Christmas, if you get up before it melts off. (Which it did.)

Christmas sunrise

It's just not a traditional Christmas without a flying monster.

The guitar that she's been asking for all year. We're afraid that her polymicrogyria will make it hard and frustrating for her little fingers, but in the end, we decided that at a time of hope and renewal, why not let her give it a try?

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I hope that no matter what the reason for YOUR season might be, you have the very best possible holiday and a new year full of promise and hope, of dreams come true and all new dreams after that.