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.

Schuyler, at ten

"It is rare that one can see in a little boy the promise of a man, but one can almost always see in a little girl the threat of a woman."

-- Alexandre Dumas

Father of the Year nominations are now closed.

A few facts about the next few days, along with an inescapable conclusion.

Fact: Two of my best friends are getting married in Las Vegas on Monday.

Fact: They have asked me to take pictures at the event, which I am thrilled to do.

Fact: Julie cannot attend, as she has to work.

Fact: Julie can't watch Schuyler while she works, and school is out for the year.

Fact: Schuyler also turns ten on Monday. (Yeah, I know. Ten.)

CONCLUSION: I will be taking my sweet little girl to Vegas for her birthday.

When Child Protective Services meets us at the airport, I hope they'll help with our luggage.

Post-Carolina

On the plane
Originally uploaded by Citizen Rob

I just wanted to take a moment and thank everyone from the North Carolina Assistive Technology Expo for a fantastic conference. Schuyler and I were made to feel welcome, and we met some truly amazing people, which is hardly a surprise by now. Our thanks to Chip Clarke and Dawn Haynes from PRC for their generosity, and to April Furr and my friend Elizabeth for making the logistics of presenting at something like this by myself with Schuyler even feasible.

It was a fun trip, despite the efforts of the TSA at the Raleigh-Durham Airport to ruin our return trip. (TSA Agent to Schuyler: "What's your name?" Schuyler: "Aye-er." Me: "Her name is Schuyler." TSA sarcastically, to Schuyler: "What, you can't talk or something?" Schuyler and I both: "No...") I never mind traveling with Schuyler, and she's got more patience for the inevitable inconveniences of flying than any adult I know.

She loves a rough flight, so when everyone else is white-knuckling, she's laughing her little head off. True story: When she asked me what was causing the plane to bump around, I told her it was a monster, because I'm that guy. She loved that answer, because she's that girl, and asked me the monster's name. "It's the Turbulence Monster," I said. Not five seconds later, the captain came on and apologized for the turbulence, and when he said the word, she looked at me in wonder and joy as if what I'd said just might be true. Thanks, captain, for that unexpected credibility.

It's funny, but in so many ways, I am reminded on a trip like this most of all that Schuyler is growing up, and into the young woman that I always wanted her to be. Happy, chaotic, funny, in love with everyone and afraid of nothing.

I had a realization today, something of an epiphany, really. It's one that I started to have, very tentatively, when I was writing the book, and I even wrote about it at the very end, although whether or not I always believed it is probably debatable. Today I realized that Schuyler is at a point in her life where there's no turning back. She's going to make it. She's not there yet, and not even close, but she knows what she has to do to get there, and there's a whole village of people watching her who literally will not allow her to get lost or fall through the cracks now.

I think I can see now that if something were to happen to me today, Schuyler would be okay. And that means the whole world to me.

Road Trip with Schuyler

Too cool to smile
Originally uploaded by Citizen Rob

Schuyler and I are coming to North Carolina this week, for the North Carolina Assistive Technology Program's 2009 Assistive Technology Expo. Julie has to work (retail and the holidays make for scant flexibility, as some of you doubtless know already), so it'll just be the two of us.

Will there be trouble and chaos? Come see us and find out. (Smart money says chaos for sure.)

Here are the details:

December 3, 2009

10:00am (Opening Session, Salons A, B, C, D ) - Keynote Address: “Fighting Monsters with Rubber Swords” - Robert Rummel-Hudson (Author, Parent)

12:30pm (Salon C) - “Implementing the Big Box of Words: A Parent’s Perspective” - Robert Rummel-Hudson, Author, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St. Martin’s Press 2009) - Listen to a father’s observations on the implementation of AAC in the daily life and school curriculum of a nonverbal child.

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December 3 - 4, 2009

2009 Assistive Technology Expo
North Carolina Assistive Technology Program
North Raleigh Hilton, Raleigh, NC

What: The Assistive Technology Expo is an exciting two-day event designed to increase awareness and provide current information on assistive technology. Conference offerings include an exhibit hall (on 12/03/09 only) featuring 30-40 vendors exhibiting the latest in assistive technology products and services, 40 concurrent sessions, a poster session and a Keynote address. Featured Tracks: Work, Education, Vision, Home Modifications and Promoting Healthy Living/Recreation.

Who: Each year between 550-700 registered participants from across the country attend the NC AT Expo and approximately 1250 attend the free Exhibit Hall. Participants include: persons with disabilities, family members, teachers, therapists, Vocational Rehabilitation and Independent Living staff, rehabilitation counselors, employers, engineers, college professors, medical staff, college and university students, and authorized state purchasers.

CP Study

For parents of kids with cerebral palsy, I'm posting this on behalf of Adam Bowker. Adam is a speech pathologist and AAC researcher whom we had the pleasure of meeting at the American Speech Language Hearing Association Convention last year. He's one of the good guys.

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Dear parents,

I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).

Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.

Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.

If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850

More on Bernie Goldberg

(Heh. "More on Bernie Goldberg". I'm twelve.)

I had listed these updates on the last blog post, but at this point, I think they probably deserve their own post. So here you go:

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Update: I posted a comment on his blog (and you can, too!):

Robert Rummel-Hudson says:

November 19, 2009 at 10:56 pm

The thing is, and I suspect you are fully aware of this, parents of kids with disabilities aren’t offended because of your conservative positions. We’re offended, deeply offended, because you have taken our children’s plights, their very LIVES, and you have turned them into talking points. You’ve politicized the most personal and difficult decision a family can face, all in the service of a cheap shot.

Here’s a secret for you, although if you had any experience with or sensitivity toward children with disabilities , it wouldn’t be a secret at all. Most of us who are raising children with disabilities don’t hate Sarah Palin, no matter how liberal our politics might be. We may hate her politics, but she’s part of our club. It’s a club none of us ever asked to join, and it’s a club with a lifetime membership. And for Sarah Palin, as with the rest of us in that club, the politics of disability will be personal for her.

As a non-member of our club, please do us the courtesy of politicizing your own children and leave ours alone. They have enough to worry about as it is.

– Robert R-H

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Update to the update: A very interesting, very intelligent comment was left on Mister Goldberg's blog that you definitely have to read. It presents, among other thoughtful points, a simple math question.

If, as reported by King's College in London, roughly 90% of fetuses diagnosed with Down Syndrome in utero are aborted, and if Down Syndrome is the result of a genetic defect that does not affect any one particular ethnic or demographic group more than any other, then clearly, liberals aren't the only parents making the difficult and heartbreaking choice to have abortions when faced with the prospect of having a child with Down Syndrome. More to the point, there are families, a LOT of them, who consider themselves to be religious, and who identify as Pro-Life, who are nevertheless making a very tough and very personal decision, and they aren't basing it on politics.

Bernie Goldberg, I hope you will consider the possibility that this decision might just be more complicated than you are allowing in your idiotic Fox News sound bite. It might be time for you to apologize for what was, upon further reflection, a deeply stupid comment.

Because I am rather fond of oxygen, however, I won't be holding my breath.

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Update cubed: Bernie has issued a statement about his remarks. Buried deep within his post, near the end, is something like an apology:

As for Palin’s decision not to abort her baby with Down Syndrome: Women and their husbands should do whatever they think is best in those circumstances. I have no say in those matters and I would never try to influence someone’s decision in that area. It’s simply, and obviously, none of my business. But I am asking this: Who is more likely to have the baby with Down Sydrome, a pro-choice woman or a pro-life woman? A woman who isn’t religious or one who is? A woman who believes a life – even a life of a fetus – is sacred, or one who doesn’t? I know there are many who will disagree, but I think it’s a safe bet that the pro-life, religious woman who believes in the sanctity of life is more likely to go continue her pregnancy (even as many who fit that description will abort a fetus with Down Syndrome).

That’s all I was trying to say. I never thought I was “politicizing” anyone’s children or anyone’s pain. If I did that, my sincere apologies to one and all. But I still believe many elite liberals hate Sarah Palin for a whole bunch of reasons that have little to do with how she would vote on this issue or that — or even, as they often claim, because they don’t think she’s that smart, There are lots of lbierals who aren’t “that smart” — and they don’t seem to trouble their fellow libs all that much.

So there it is, Bernie Goldberg's sincere apology, wrapped in layers of justification and parting cheap shots like bacon, and of course followed immediately by a sentence that begins "But I still believe...". It is, in fact, a pretty weak apology, insulting enough that I almost wish he'd just said "Fuck you, I stand by my words!"

Bernie Goldberg's career as an author and a talking head is entirely, completely, 100% based on his ability to politicize every issue that he touches and to demonize and dehumanize people whose political beliefs differ from his own. If he admits that he crossed a line and that some of the heartbreaking, grey-area moral questions faced by families like ours can and should transcend red/blue politics, then he weakens his brand. I suspect, therefore, that this is as good as we're likely to get.

So thanks, Bernie. You're a peach.

A Message for Bernie Goldberg

I'm going to start off by saying that I had no idea who Bernie Goldberg was before this. A few minutes on Wikipedia and his own website told me plenty, that he's got a snappy suit with a nice tie, and that he's a conservative writer with a penchant for hyperbolic book titles. And that's fine, really. There are plenty of conservative writers whom I've admired in the past. (Well, "plenty" is perhaps pushing it.) I realize that sounds dangerously close to "some of my best friends are black", but it is what it is. In my own writing, I try to be fair and I try not to be boring. (It's harder than it sounds.) Follow those two rules and I don't care what your politics are.

I also never watch Fox News (see above re: fair and not boring), so I probably would have missed Bernie Goldberg's comments if not for Jon Stewart last night. The topic was Sarah Palin, or more precisely the media reaction to Sarah Palin. The part that jumped out at me came at about 6:15 in the show:

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
Daily Show: The Rogue Warrior
www.thedailyshow.com
Daily Show Full Episodes Political Humor Health Care Crisis

If you don't feel like sitting through that, here's the money quote from Mister Goldberg:

"She [Palin] has five kids. Liberals don't have five kids. One of them has Down Syndrome. Liberals certainly don't allow THAT to happen."

Okay.

So let me strip this of politics for a moment, because I find it equally distasteful when people of any political stripe do this, and I try (with admittedly varying degrees of success, I'm sure, so call me a hypocrite if you like) to avoid doing it myself. But let me just state something that would seem to be torn right from the pages of The Encyclopedia of No Shit.

Families of kids with disabilities are not here to serve as your political talking points.

Whether or not you are a good parent to a child with a disability has nothing to do with your politics. Conservatives have broken children, liberals have broken children, and we all do the best that we can.

Conservative politicians say stupid things ("How does special education, $6 billion dollars, stimulate the economy?" - Sen. John Kyl), and so do liberals (President Obama's idiotic joke about the Special Olympics). If there's one thing I think we can all agree on, it's that neither party has been particularly sensitive to the needs of the disability community, not when it comes to actually doing something besides talking pretty. If you are in public office and your last name isn't "Kennedy", chances are, you haven't done enough to help these kids.

Perhaps I'm just not looking hard enough, but I can't find any information online that suggests that Bernie Goldberg has any particular expertise regarding children with disabilities. I felt pretty confident, therefore, in sending a message to Bernie via Twitter, one that I am absolutely 100% certain will fall on deaf ears.

"Please politicize your own kids, not ours."

Ass.

From the margins

Walking for talking
Originally uploaded by Citizen Rob

Over the weekend, we participated in the 2009 Childhood Apraxia for Speech Walk in Fort Worth. I realize that I almost never use the term "apraxia" to describe Schuyler's monster, mostly because in her case, we know where it comes from, which is hardly the case for many or even most parents of kids with apraxia of speech. We're at least spared some of the mystery, which is no small thing. Think of all the scariest movies you've ever seen; it's the monster you CAN'T see that inspires the deepest dread.

Schuyler's particular affliction, Bilateral Perisylvian Polymicrogyria (PMG), isn't a disease. It's a condition, a congenital malformation of her brain. From this condition spring the symptoms and the disorders and the disabilities that kids with PMG experience, such as epilepsy and apraxia. It's a subtle distinction, and one that is honestly sort of meaningless in the big scheme of things, but it does mean that families dealing with polymicrogyria are also dealing with these other disorders individually. To a parent whose child is being tormented by seizures, epilepsy is a more immediate concern than polymicrogyria. Sometimes the monster's claws loom larger than the monster itself.

So we signed up, raised some money (and thank you to everyone who contributed!), and on a perfect Sunday afternoon, we all met in a park and did this thing. We showed up, freaky non-barking pug in tow (and how perfect was it, bringing our non-verbal dog to an apraxia of speech event?), and I think everyone had a fantastic time. I got to meet some people who'd read the book and have some very meaningful conversations about it, and most of all, we got to spend time with families who are, in one way or another, in the same boat with us.

There were two groups who stood out in my mind at this event, both of whom represent a crucial part of the disability community and have their own unique set of concerns, and yet are both deeply marginalized in typical discussions of disability parenting.

Unless childhood apraxia of speech accompanies other conditions with more obvious manifestations, many of these kids, like Schuyler, can pass, at least at first glance, as neurotypical kids. Indeed, in watching them play together on Sunday, it was hard to tell which kids were apraxic and which were siblings or otherwise unaffected family or friends. Obviously, this is a double-edged sword. It's a good thing, mostly. These are kids who have one major social obstacle removed from their path, that gut-level negative reaction to someone who appears different or broken. It's that thing that lives in our lizard brain, the caveman instinct that says to flee the afflicted lest you yourself suffer the same fate. Any parent of a child with an outwardly obvious disability can tell you how horrible that reaction can be, even from the most well-intentioned. It's a bullet that Schuyler has largely dodged, and for that I am entirely grateful.

But at the same time, there is another look, another reaction, one that has its own sting. It's the one that parents of kids with autism are often the most familiar with, the one that is stripped of sympathy because your child looks, and here's that word, normal. Your child doesn't have outward signs of their disability, no physical malformations, no tics, no spasms or limps, no prosthetics, no flags that say "Tread carefully here". They appear instead to be children who act out, who choose not to communicate or to interact socially in a way deemed appropriate. Their parents are asked why they can't control their kids. I still remember the surly woman who berated Schuyler for "mocking" her questions with her nonsensical babbling.

It's not a worse problem, and in about a hundred different ways it's the one I'd pick if given a choice between the two possibilities. (What wouldn't I give for that third choice?) But it's real nonetheless, and watching Schuyler play with these kids on Sunday and knowing that anyone walking past would see nothing out of the ordinary, I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."

It's hard for families, and most of all, it's hard for these kids. They want to be "normal", and appearing so doesn't change that. Looking like a real boy wasn't much consolation to Pinocchio.

The other group I saw in greater numbers than usual at the event was fathers. A lot has been made of the fact that mothers comprise the majority of disability caregivers, and for every blog and book out there dealing with fathers of disabled kids, there are many more from the perspective of mothers. The numbers are what they are. I won't try to pretend otherwise.

But I think it's time to start examining some of the underlying reasons that this inequality continues, something beyond "Guys are jerks." Lately, I've had the opportunity to meet some amazing fathers. I spoke on a panel at the Texas Book Festival with two other authors, fathers whose involvement with their children's care was extraordinary and moving. I had lunch recently with a father looking for advice on his own manuscript, a deeply personal look at his experience with a child with autism. And at the Apraxia Walk, I met fathers whose commitment to their kids is unshakable and which should be unquestionable.

When fathers like these come up against a society that expects them to fail their children and which doesn't even bother to make a place at the table for them, they feel marginalized. WE feel marginalized, I should say, because years of loud-mouthed advocacy and publication of a book hasn't changed the fact that I still have to insist on that spot in the discussion, too. For fathers less aggressive and narcissistic than me, the path of least resistance beckons.

I understand that every one of the "special needs moms" websites and books out there has a right to exist and speak to the particular issues faced by mothers of broken children. But I also wonder how many of those particularly "mother" pressures would be eased if we started to make that place for fathers to feel like they are part of the discussion. Because everyone time a writer couches the struggles of families of disability in the guise of "mothers' issues", they are instantly excluding some of the voices that matter the most.

Not all of the discrimination in the disability world comes from outside. Not all the erroneous assumptions are made by people who don't, or shouldn't, know better.

Flygirl Realized

On Halloween weekend, we had an amazing experience, one that we're unlikely to forget any time soon. Almost a week and a half later, we're all still talking about it.

And the book festival was fun, too.

A few weeks ago, when they saw that Schuyler had chosen her hero, Amelia Earhart, for her Halloween costume, Austin friends Jim and Pat Howard emailed me with an amazing offer for Schuyler's weekend in town for the Texas Book Festival, assuming we had time. When I read the offer, I knew immediately that we'd make the time.

I'm not sure how long I've known Jim and Pat, although I can remember Jim giving me a hard time about buying my previous car, the admittedly ridiculous Beelzebug, and that was over ten years ago. Jim and I couldn't be further apart in our politics, but we've never let that poison our friendship. As a result, I think that even when we disagree, we do actually hear each other occasionally. We finally met face to face a number of years ago, I believe when I returned to Texas from my Yankee exile, and Julie and I have counted the Howards as constant supporters of Schuyler and this family for as along as I can remember. I was delighted by their offer, but I can't say I was surprised.

So it was that on a beautiful, clear Sunday morning a week and a half ago, Julie and Schuyler and I found ourselves at the airport in Austin, walking out to see what was easily the most beautiful aircraft I have ever seen.


The jet is a Dassault Mystere Falcon 900, built in France and considered to be among the finest, if not the finest, civilian aircraft that a gigantic box of money can buy. (According to the Dassault website, there are only 160 of them in the world.)

The pilot of the Falcon is Kyle Kimmell, and from the first moment we met him, he impressed us with his kindness towards Schuyler, his patience with her and his appreciation of her enthusiasm. I can't even begin to express how generous it was for him and for the plane's owner to have prepped and made available for her to see it like this. The Falcon was sleek and perfect on the outside, and indescribably plush in the cabin, but Schuyler was only interested in the cockpit. Kyle explained what all the controls did, he didn't flinch when she grabbed the headset and put it on, and he even let her start up the engines. (I suspect she burned about a month of my salary's worth of fuel while we were sitting there.) He was more than patient. Kyle seemed genuinely happy to show this amazing aircraft to Schuyler, and he thanked us for bringing her more than once.

And really, getting to go on board the Falcon and sit in the cockpit and fire up the plane's systems, all of that would have been enough to make Schuyler's whole year.

But we were just getting started.

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Jim is a member and past president of the Chandelle Flying Club in Austin, the group that owns the 1978 Piper PA-28 Warrior that he took us up in. Like her hero Amelia Earhart, Schuyler got to take to the air.

Owing to a lack of space and Julie's intense and unshakable desire not to leave the ground, the flight consisted of Jim and Schuyler in the front and me sitting behind them. Jim walked Schuyler through the pre-flight check and showed her exactly what he was doing, and then we were off.

Schuyler can be a squirrelly kid when she gets excited, and we were worried that she might get a little flighty, no pun intended. But throughout the whole experience, from the moment we climbed into the plane on, she was suddenly very focused, listening carefully to Jim's instructions and becoming very quiet when he needed to communicate with the control tower. She was a perfect little passenger as the plane took off and as Jim climbed to about 3000 feet.

And then she became a perfect little pilot.

I don't think she believed that she was actually flying the plane until Jim took his hands off the controls altogether. He showed her the basics of flight control and then, for the bulk of the rest of the flight (excluding the landing, of course), Schuyler piloted the plane. Jim would pick landmarks on the ground, such as smoke from a fire or the glint of the sun on a lake, and Schuyler would take us there, circling the target once we arrived. Jim emailed me afterwards to let me know that she had in fact been flying the plane for most of the flight. "I think she pretty much figured out how to control the roll axis," he wrote. "When I helped it was usually with the pitch axis. As is typical for new flyers she started with a death grip on the control yoke, but unlike some adults I've flown with I was able to persuade her to relax and hold the yoke more gently, which makes flying much easier."


It's a funny thing about Schuyler. She's got this disability, and it throws obstacles in her path every day. School is challenging for her and will only become more so. The social life of a preteen girl isn't going to be easy or gentle on her, either, particularly not in a town like Plano. Her future is harder than I let on sometimes, perhaps because I want her story to be nothing but successes, and I suppose sometimes I don't talk much about the bumps that she hits, or the ones still waiting in the future for her.

But Schuyler is tenacious, and while she loved flying and is still talking about it (and answering happily to "Flygirl"), I don't think it occurs to her that she's unusual for getting to go up in an airplane, to actually take control of an aircraft and fly it. For Schuyler, life seems to be a series of experiences, of new people to meet while she signs books with her face on the cover, to attend a book festival and listen as her story is discussed by a panel of published authors, to see herself or her father on television, or to take to the air. I've gotten a lot of things wrong with her over the years; I've blown it many times as her father. But by introducing her to a world with people like Jim and Pat Howard and Kyle Kimmell in it, and by trying my very best to accommodate unique opportunities for her, I like to think that sometimes I get it right, even if that just means getting out of her way. I'm forty-one years old and I've never flown an airplane. I like to think that Schuyler's life experiences will intensely outshine my own. In all the significant ways, they already have.

All of this is to say that I am immensely proud of Schuyler, more than I have words for.

Jim described Schuyler as "a real ball of fire, with the heart of a lioness". I felt bad for him in one moment, when he took the controls to show Schuyler exactly how steeply the plane could turn. I'm not sure what he thought he saw when he glanced over at her, but he seemed to think that perhaps he'd pushed it too far, that the daunting angle of the plane had frightened or bothered Schuyler. But midway through the second turn, I tapped her on the shoulder and asked her if she was having fun.

I think the photo I snapped when she looked back at me says it all:

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Thanks to pilots Jim Howard and Kyle Kimmell.

"It is before our very eyes..."

Excerpts from remarks by President Obama at the memorial service at Fort Hood, Texas.

For those families who have lost a loved one, no words can fill the void that has been left. We knew these men and women as soldiers and caregivers. You knew them as mothers and fathers; sons and daughters; sisters and brothers.

But here is what you must also know: your loved ones endure through the life of our nation. Their memory will be honored in the places they lived and by the people they touched. Their life's work is our security, and the freedom that we too often take for granted. Every evening that the sun sets on a tranquil town; every dawn that a flag is unfurled; every moment that an American enjoys life, liberty and the pursuit of happiness – that is their legacy.

...

As we face these challenges, the stories of those at Fort Hood reaffirm the core values that we are fighting for, and the strength that we must draw upon. Theirs are tales of American men and women answering an extraordinary call – the call to serve their comrades, their communities, and their country. In an age of selfishness, they embody responsibility. In an era of division, they call upon us to come together. In a time of cynicism, they remind us of who we are as Americans.

We are a nation that endures because of the courage of those who defend it. We saw that valor in those who braved bullets here at Fort Hood, just as surely as we see it in those who signed up knowing that they would serve in harm's way.

We are a nation of laws whose commitment to justice is so enduring that we would treat a gunman and give him due process, just as surely as we will see that he pays for his crimes.

We are a nation that guarantees the freedom to worship as one chooses. And instead of claiming God for our side, we remember Lincoln's words, and always pray to be on the side of God.

We are a nation that is dedicated to the proposition that all men and women are created equal. We live that truth within our military, and see it in the varied backgrounds of those we lay to rest today. We defend that truth at home and abroad, and we know that Americans will always be found on the side of liberty and equality. That is who we are as a people.

Tomorrow is Veterans Day. It is a chance to pause, and to pay tribute – for students to learn of the struggles that preceded them; for families to honor the service of parents and grandparents; for citizens to reflect upon the sacrifices that have been made in pursuit of a more perfect union.

For history is filled with heroes. You may remember the stories of a grandfather who marched across Europe; an uncle who fought in Vietnam; a sister who served in the Gulf. But as we honor the many generations who have served, I think all of us – every single American – must acknowledge that this generation has more than proved itself the equal of those who have come before.

We need not look to the past for greatness, because it is before our very eyes.

...

Long after they are laid to rest – when the fighting has finished, and our nation has endured; when today's servicemen and women are veterans, and their children have grown – it will be said of this generation that they believed under the most trying of tests; that they persevered not just when it was easy, but when it was hard; and that they paid the price and bore the burden to secure this nation, and stood up for the values that live in the hearts of all free peoples.

So we say goodbye to those who now belong to eternity. We press ahead in pursuit of the peace that guided their service. May God bless the memory of those we lost. And may God bless the United States of America.