F-Bombing the Senate Chamber

(Photo by Ginna Foster)
Originally uploaded by Citizen Rob

So let me get the best part out of the way. I said "fuck" in the Tennessee State Senate Chamber, with an audience looking on. And I did it on purpose.

I'm not going to try to describe the Southern Festival of Books in Nashville, where I was last week. Suffice it to say, it was like heaven for book nerds. I was one of over two hundred authors attending and presenting, and I have to confess, I did get a little drunk on the golden aura that seemed to project out from the name tag hanging from my neck, the simple white badge that only the authors got. Everyone perked up when I walked by, security guards at the legislative buildings let me walk through while other people got searched, and in general, this simple little white lanyard conferred upon its wearer the very fanciest fancy pants of all.

Simply stated, it was a fantastic weekend. Nashville is extremely cool. I realized Friday night while exploring the downtown area that Nashville really is exactly what Austin has been trying to be for a long time. It has a truly amazing music scene and an acute sense of history, and it also has a real and vibrant literary scene that other cities should envy. The book festival is just one manifestation of that.

I met some amazing writers. There was Laurel Snyder who signed a copy of Up and Down the Scratchy Mountains for Schuyler and whose creepy and perfect Inside the Slidy Diner made me wish Schuyler were still young enough for picture books.

I spent time talking to the fascinating Sallie Lowenstein, whose desire for creative control over her books led her to found Lion Stone Books, an independent publisher whose projects reflect her passion and her creativity. I picked up In the Company of Whispers, which defies description except to say that it is a beautiful book and like nothing else I've ever seen or read.

One of the greatest pleasures was meeting Sigourney Cheek, author of Patient Siggy: Hope and Healing in Cyberspace) and the other writer on my panel discussion. I had no idea what to expect, but she was serious about her work, unbelievably gracious to me, and extremely intelligent. Her perspective on writing and particularly on memoir related to personal struggle gave the presentation a real depth.

You know, right up until I said "fuck" in my reading.

The panel was run by an exceptional moderator, Lacey Galbraith from Swift Book Promotion in Nashville. I got to spend a lot of time with Lacey and Swift Book Promotion president Ginna Foster; they took pity on poor shy me and spent the better part of Saturday evening in my company. I can't tell you how much fun they were, or how much I appreciate their friendship.

The most unexpected and interesting encounter came on Saturday afternoon. With so many presentations going on at the same time, there was a tough choice to make every hour or so. I wanted to go hear Rick Bragg's presentation, but one of my favorite writers for public radio, Sandra Tsing Loh, was speaking at the same time, so I bailed on the gigantic Braggfest (where hundreds of people were lining up half an hour before) and found myself on the front row of Sandra's high energy performance. If you've never seen her and you get the chance, do it. Her new book, Mother on Fire: A True Motherf%#$@ Story About Parenting!, is based on a stage performance she does, and it is incredibly funny and manic. I was exhausted just watching her, although it should be noted that I get tired easily these days. Also, get off my lawn.

Anyway, as I sat there listening, she began talking about the cause that has been driving her of late, one about which she feels passionately and for which very few people are working. It turns out that Sandra Tsing Loh is an enthusiastic advocate for public schools (in her case, the schools of Los Angeles Unified). Considering how much advocacy I've engaged in for public schools (from a special needs perspective), I suddenly felt like my attendance at this presentation was, well, sort of fated.

After each presentation, the authors were escorted to a special area to sign our books, and that's where I got to actually meet Sandra Tsing Loh and tell her my story. This turned out to be easier and less fanboyish than I'd feared, because (insert a little choir singing "ahhhh!") I was wearing the Nametag of Authorial Wonderfulness and my pants were transformed into exquisite fanciness. She immediately treated me like a colleague, and got very excited when I told her my story. She had her publicist run over to the table to buy my book so she could have me sign it, and she asked for my email address so she could contact me later, possibly to talk again when she appears in Dallas in the near future.

"I'm so happy to see another public figure advocating for public schools," she said. "There aren't very many of us, you know."

Public figure. My ego began eating Tokyo at that point.

So yeah, I had a good time.

(Incidentally, about that F-bomb I dropped in the Senate Chamber. Consider that I also managed to get Disney's Wondertime magazine to print the word "asshole"; clearly I'm all about tainting hallowed institutions. But this wasn't just a random, Tourettesian verbal explosion. No, even better, it was part of my reading, from the chapter of Schuyler's Monster in which I share the letter I wrote to Schuyler on Christmas Day of 2004. So don't think I'm just a random vulgarian. Oh no, I was reading from a letter to my five-year-old daughter in which I use the word "fuck". I am Klassy with a K.)

All of this is my long-winded way of expressing my thanks to everyone involved in running the Southern Festival of Books for an amazing festival, particularly to Margie Maddux Newman, Serenity Gerbman and Lacey Cook. I'll have to get busy on my next book, because I want to come back. There are still so many obscenities left with which to foul your legislative halls.

A Very Calm Presence

A Man and his Monkeys
Originally uploaded by Citizen Rob

Just a quick word as I prepare to leave for Nashville tomorrow morning. I checked the Southern Festival of Books schedule and saw that my panel with Sigourney Cheek now has a title:

"A Very Calm Presence" — Two Stories of Family, Friends and Healing

A number of people have already indicated that they're coming. I hope you'll be there, too, if for no other reason than to see how I reconcile "A Very Calm Presence" with Schuyler, my tempestuous, monster-slaying tornado girl.

I had an epiphany about her, by the way. If you'd like to know what Schuyler sounds like when she actually speaks, you should play one of the Sims games. To the uninitiated (and even sometimes to Julie and me), Schuylerese sounds remarkably like Simlish. Unintelligible, but strangely beautiful.

My Fancy Pants Weekend

Southern Festival of Books
Originally uploaded by Citizen Rob

I'm getting ready for an event that honestly, I've been looking forward to for a long time. This weekend, I'll be at the Southern Festival of Books in Nashville, participating in a panel on Saturday at noon with Sigourney Cheek, author of Patient Siggy: Hope and Healing in Cyberspace. I've not met Ms. Cheek, and the panel hasn't been assigned a topic, at least as far as I know. (Hopefully it'll dodge the Plucky Little Soldier, Patch Adams thing.) As a result, I'm in the interesting position of preparing to talk about my book without knowing exactly what I'm going to say. To tell the truth, I sort of like it that way. I do some of my best thinking on the fly.

Between now and Saturday, I'm re-reading a book that should prepare me a little for this panel -- mine. I actually haven't read it in a while, so please, no spoilers.

I'm looking forward to this for a lot of reasons beyond free trip to Nashville. (Although, you know, free trip to Nashville!) I've been doing a lot of events, but most of them have been in the capacity of Schuyler's father, who by the way also wrote a book. I'm going to Nashville as an author first and foremost, and I have to say, that's nice. It's easy to forget that I wrote a book. I know that sounds weird, but it's true. Even now, while I'm reading it again, I have these moments of "Holy shit, did I really write all this?" I'm still a little surprised myself.

There are going to be some excellent authors at the festival, including Rick Bragg and Ann Patchett. I'm looking forward to being there with people whose pants are much fancier than my own, and to be able to look at them as something akin to a colleague. A slobbering colleague, perhaps, but I'll take that.

If you're in the area, I hope you'll come by and say hello. There are going to be something like 200 authors represented, all on the apparently fancy grounds of the War Memorial Legislative Plaza. (I don't expect to ever again be able to say "I will be speaking in the Senate Chambers" again in my life, so I'm trying to say it a lot this week.) Best of all, it's free to the public. It looks like a lot of fun.

Hopefully I'll see you there. You know, in the Senate Chambers. Where I'll be speaking. Did I mention that already? I did, okay.

It's hard out here for a pimp

She digs it.
Originally uploaded by Citizen Rob

So I know I already mentioned my appearance tomorrow, but I just wanted to give one last little burst of pimpy goodness.

Tomorrow I'm signing at Borders in Allen, Texas, which is just up the road from where I live. It is in fact the closest bookstore to where I live, so it's sort of like my own quiet little neighborhood bookstore. Mom and Pop, if they worked for a huge corporation.

There are going to be other authors there that day, including a live radio broadcast by Kim Snider, author of How To Be the Family CFO, presumedly giving financial advise (I wonder if she'll mention suicide?). The hour before me will feature two writers who have written books about Princess Diana. (SPOILER: She dies) One of them, Lady Colin Campbell, has a rather interesting story of her own, but I won't ruin your Wikipedia fun by giving it all away.

Oh, and there's a bounce house. They freak me out, personally; all I can imagine is all the bacteria saying "Wheee!" as they jump from one kid to the next. But that's just me. I have Issues.

If you live in the area, I hope you'll come. This is one of those new, "experimental" Borders stores, with the cool music burning and print on demand stations, and the Watters Creek shopping area that it anchors is really very fancy and pleasant. We go there and walk around a lot, pretending we can afford to buy things. It's all so new that if you look at the satelite photo on Google Maps, all you'll see is a big open construction site. Trust me, there's stuff there now. No need for lawn chairs.

And of course, Schuyler will be in attendance. In a very funky dress, I might add. All the trendiest eight-year-old mute chickies will be wearing it this season, mark my words.

-----

Saturday, October 4, 2008
4:00 pm
Borders Books and Music at Watters Creek (map)
965 West Bethany Dr.
Allen, TX 75013
214.383.9676

Monster Family Values

I snuck him into Schuyler's room last night while she slept, and when we woke her up this morning, we asked her if she heard a monster crying. When she saw him sitting there with the other two, she lost her mind. This is how she left them posed when she left for school this morning.

And Baby Monster is apparently a girl. Well, clearly.

Weird and creepy? Or unexpected teaching moment? You decide.

Monster Giggle

Us
Originally uploaded by Citizen Rob

It's been a rough few weeks for Schuyler.

I mean, let me put that in context, because it's important, I think, to make a distinction here. There was a time in her life when that sentence could have very well been one of foreboding. In the past, a rough time for Schuyler could have been one in which she was back in the hospital for staph surgeries. It could have been one in which she was undergoing tests that freaked her out and hurt her and ultimately led to more questions than answers. And it wasn't that many years ago that a rough patch for Schuyler could have been one in which her teachers in Austin were trying to deny her services or even taking her speech device away from her, muting her and making her feel powerless and weird.

So I'm happy to report that the past couple of weeks have been a challenge for Schuyler for the same reasons that your own neurotypical kids have rough times. I know plenty of broken parents who would give a decade off their lives to have the problems that we've had recently. In a lot of ways, Schuyler's current issues even make me a weird kind of happy.

I told you about the loss/theft/alien-abduction/whatever of Schuyler's glasses. Sure enough, they never reappeared, and she's made do with her much less cool backup pair. The fact that they were taken/mysteriously-vanished/eaten by bears/whatever during her after-school program is just one of a long string of problems we've had with that program. None of them have been serious, not since the summer of '07, known as the "Here's a letter to the district program director explaining what it means to be ADA/IDEA compliant, have a nice day" summer. But still.

When the staff running the program appear to be losing track of kids and their belongings, that's bad for any of the kids. I'm ready to argue, however, that for a nonverbal but socially outgoing and weirdly beautiful (given her father's face) little girl with a fierce resistance to the idea of Stranger Danger and a $7,500 piece of equipment perpetually in tow, those concerns are multiplied. Add to that the fact that one of the staff members offered Schuyler a bag of Doritos (forbidden because of her PMG and its resulting choking danger), RIGHT IN FRONT OF US, and you might be correct in assuming that we've got some concerns, to put it lightly.

Schuyler's performance in school has been rocky, I have to say. I think she's finally settling in, partly as a result, I hope, of the IEP meeting we had recently. Schuyler's in third grade, which is age appropriate for her, but the work load has been stepped up and grades are now being counted for the first time. Standardized tests are being applied, and that means "scary boo" concerns from everyone. If Schuyler's going to keep up, it's going to take a lot of work, and focus, and we went into that meeting expressing our clear expectation of everyone involved in her education. There were some areas that we felt needed to be tweaked and improved, and they seem to have been. Schuyler's new mainstream teacher is young and fresh and happy, and while my McCainesque reaction to that kind of person is usually grouchy and condescending, I have to say that she seems to be on track. Schuyler loves her unconditionally, of course.

So here's where the concerns become little silver linings, even to someone like me who is resistant to taking lemons and turning them into anything but projectiles. The biggest issue for Schuyler to come out of that meeting, and in the occasional note sent home, has been her focus. Not her broken brain, not debilitating seizures, but her attention span. She tends to become distracted easily, and can sometimes be hard to keep on task. It's not her enthusiasm that's at issue; indeed, her sunshiny new mainstream teacher reported that Schuyler frequently raises her hand to answer questions before she actually determines whether or not she knows the answer. She just has a hard time staying on task sometimes.

The other thing we've gotten notes sent home about has been her willful defiance from time to time. And here's where I'm going to be blunt about something that's bugging me a little. We got an email recently explaining how Schuyler was refusing to do what one of her teachers asked her to do, and was being defiant and saying "no" when told to go somewhere, instead just crossing her arms and planting her feet. It was requested that we address this at home.

Another time, we were informed that she was giggling in class, and trying to make another girl laugh, too.

Well, okay. I know it might be in my nature as her father to be defensive on her behalf, although God knows we brought down the hammer when she got home from school. (On the defiance thing, not so much the giggling.) But the thing is, she's eight. She's defiant. Schuyler is praised by her teachers, and by me come to think of it, for her independent spirit and her "take no bullshit" attitude. And I truly love that about her most of the time. When she turns it on Julie and myself, it can be hard to stay positive about her independence. Everyone's happy about her stubborn independence until it gets turned on them. She's like the "loose cannon" character in every cop show on tv.

I guess what I'm trying to say is that I'm not sure that a defiant eight-year-old is really an emergency, email-the-parents-at-work kind of an issue. I think people are afraid to stand up to Schuyler, and that's probably my own fault as much as anyone else's. I suspect I paint a picture of our relationship that sounds very free and easy to you, and in some ways that's exactly right. But Schuyler hears "no" at home a lot, almost a ridiculous number of times every day, and when she says she doesn't want to do something, she hears a variation on "tough shit, do it anyway" an equally impressive number of times.

Most importantly, when she gets shut down, Schuyler almost never throws a fit about it. She never melts down and she very rarely pushes her case beyond the "repeat it a few times and see if the answer changes" phase. She has even given up on getting a "no" from one parent and then asking the other, although I'm sure than maneuver will return. Schuyler is willful and defiant and independent, but she also has an uncanny knack for sizing up the resistance and picking her battles. She's looking to determine her boundaries like any other third grader, and once she knows where they are, she's pretty good about accepting them.

While we're on the topic of notes, a story. When I went to pick her up yesterday, Schuyler had clearly met with some tragedy. Half of her face was red, with angry welts and scratches. She told me that she'd fallen in the grass during recess, and she didn't seem particularly bothered by it. It wasn't really a big deal, aside from the poor timing (school photos tomorrow, book signing on Saturday), but I was annoyed that we didn't receive a note or an email about it. I had to write to her teacher to get details, although in all fairness, there weren't that many to get. The teacher thought that Schuyler would tell us herself, and in fact she did.

Still, in the future, I'd probably rather get a note about injuries than giggling. As a general rule of thumb.

The important thing about all this is that Schuyler's issues these days are rather mundane. Even my issues with her school are Small Stuff; they continue to get the Big Stuff not just right, but dramatically right.

If I could send an email back in time about five years to myself, back when we were stressing over Schuyler's newly identified monster and the potential havoc it might visit on her in the future, and also the anxiety we felt over her abysmal New Haven school situation, 2008 Me would try to convey the hope and the possibilities that stretched before her. I'd tell 2003 Me about the bad things that never came to pass, and about the Big Box of Words, and the teachers and friends in Plano who would change Schuyler's life and put her on a trajectory that we wouldn't have dared to even dream about before.

But if only given one sentence with which to reassure myself, I could do worse than "Dude, her teachers here in 2008? They're worried about giggling..."

Event at fancy new Borders, by golly!

SCHUYLER'S MONSTER
Originally uploaded by Citizen Rob

Signing and Discussion

October 4, 2008
4:00 pm
Borders Books and Music Watters Creek
965 Bethany
Allen, TX 75013
214-383-9676

Part of Educators Appreciation Weekend

---

Borders Books and Music Watters Creek
Schedule for October 4th

11:00 am - Special Kids Story Time with activity provided by the City of Allen

12:00 pm - Live radio show and book signing with Kim Snider, author of How To Be the Family CFO

2:30-4:00 pm - Book signing Sarah Goodall, author of The Palace Diaries
and Lady Colin Campbell, author of Empress Bianca

3:00-6:00 pm - Bounce House (located outside)
Provided by Fire House Bounce

4:00 pm - Signing and Discussion with Robert Rummel-Hudson, author of Schuyler's Monster

7:30 pm - Musician Mark Shelton

Baby Monster

Three little monsters
Originally uploaded by Citizen Rob

Not being a teacher or having any experience with kids other than my own (other than being a former child myself), I'm not sure if she's at the appropriate age for this, but Schuyler has become fascinated with babies. More to the point, she's become fascinated by the fact that babies start off in their mother's tummies.

Oh yeah. That's the conversation we've been having. This one I've left mostly to Julie.

You might remember that Schuyler has two monsters that she loves above all her others (with King Kong being the possible exception). They are from Star Wars, known in nerdspeak as "rancors", although if you are Schuyler, they are Sam and Margaret. (She asked me to name the second one; readers of my book will enjoy my choice.) I think she believes they are Cloverfield monsters, but now they've become her friends. And, as she was careful to note, they don't eat their friends. (Everyone else is presumably screwed.)

Sam and Margaret have been boyfriend and girlfriend for a while, but recently, Schuyler has begun referring to them as the mommy monster and the daddy monster. And of course, she keeps asking if Margaret has a baby monster in her tummy.

Um.

I wasn't sure how to deal with this; she's not even nine yet. But it seems really important to her, and so I've been trying to come up with something. And the thing is, I know that just about any bug-eyed monster toy would do. But as much of a slob as I can be in just about every aspect of my life, I am weirdly OCD when it comes to Schuyler. I have Issues.

Well, thanks to a line of Star Wars toys aimed at younger kids (although, perhaps predictably, coveted by thirtysomething Mom's-basement-dwellers who are making it hard to find except on eBay, ouch ouch ouch), a perfect answer presented itself.

If I can find one, I do believe I may have found Baby Monster.

Peeper Caper

Purplicious
Originally uploaded by Citizen Rob

We thought Schuyler lost her new glasses last week. We talked to her teachers and to the people who run her after school program, and we tore her school apart for two days looking for them. We managed to narrow down the time when they were lost, between her last class and the beginning of her after school program. The woman who runs the program insisted that Schuyler didn't have them on when she arrived, and despite the fact that there are probably a hundred kids in that program arriving at roughly the same time, we believed her.

I'm ashamed to say that it was only two days after they went missing that I took Schuyler for a walk around the school, asking her what she did with them. She'd originally told Julie that she took her glasses off in the gym, and when I asked, Schuyler's story didn't change. This time, rather than getting any input from anyone else, I just let Schuyler show me what she did.

Quietly but with an air of certainty and even relief that she was finally being taken seriously, Schuyler again said she took them off in the gym and then showed me where she took them, to where her backpack was left every day with the rest of the kids'. She showed me how she took her glasses off and placed them in the hard, clam-shell case and slipped them into the mesh side pocket of her backpack, snug bug visible. And when she returned for them, they were gone.

I feel bad for not listening to her more closely; in my defense, it was the first time I'd been there with her, and Julie got distracted early on by the insistent protestations by the program head that Schuyler absolutely did not have her glasses on when she arrived. I feel bad about it, because based on what Schuyler says and on the unlikelihood of that big purple case just vanishing into thin air during a walk down one hallway between classes, I now don't think Schuyler's glasses were lost.

Yeah, I think they were probably stolen.

The older I get, the more I realize that while I once thought I liked kids, it is becoming increasingly clear that really, I probably only like my own.

Shameless request for help

Monster & Monster
Originally uploaded by Citizen Rob

Okay, so I just found out that I have, um, very little time to turn in any typos and edits to St. Martin's Press for the paperback. So if you have read my book and you saw anything that jumped out at you as wrong or weird, please drop me a line or leave a comment. You'll have my eternal gratitude, which is probably worth more than your stock portfolio at this point, right? Am I right?

I promise, I'll post something real soon, maybe later today. Lots to talk about regarding Schuyler, the love of my life, my little mermaid princess, my reason for living, as soon as I drive to her school and look for the new glasses that she lost. After a week and a half.

Ten days. Yeah.

I made the DaFoWo Show!

Okay, I'm going to geek out a little now, because this is actually my favorite web program, and I got some serious screen time on it. (I'm about three minutes in.) It's a weekly webcast sponsored by the Fort Worth Star-Telegram, featuring Kristin Campbell and John Metz, who do the hosting, the writing and the very fun editing. It focuses on local Fort Worth/Dallas content, but I don't think there's a lot of inside humor. Go check out some of the older shows, too, at www.dafowo.com.

Anyway, thanks, Kristin!

Prodigal Son Revisited

(The Shorthorn: Michael Rettig)
Originally uploaded by Citizen Rob

You know, there's been a lot of different press for Schuyler's Monster, from public radio to television to articles in newspapers like The Dallas Morning News and magazines like People and Wondertime and Good Housekeeping, and yet there's nothing quite like seeing your face in your old college newspaper:

The UT Arlington Shorthorn - Robert Rummel-Hudson to speak at library

I'm not sure why it's always such a big deal to me, just like I'm not sure why I'm so nervous about my address at the university tomorrow night. I suppose it's the juxtaposition between whatever success I've achieved with this book and in my life as Schuyler's father with whatever abysmal expectations I probably set when I was a student.

I mean, I'm not sure how many people read about me in People and said, "Hey, wow, I thought he'd be in jail by now, or maybe working the window at Taco Bell. Good for him..."

Plugga-lugga-lugga

Don't forget the exclamation point
Originally uploaded by Citizen Rob

The Friends of the UT Arlington Library

cordially invite you to a presentation

"Fighting Monsters with Rubber Swords"

By Robert Rummel-Hudson

author of the new book Schuyler's Monster
(St. Martin's Press, 2008)

Friday, September 12, 2008
7:30 p.m.
6th Floor Parlor
UT Arlington Central Library

R.S.V.P. by September 11
at 817-272-7421 or bwood@uta.edu

Robert Rummel-Hudson is communications coordinator in the University of Texas at Arlington School of Architecture. Rummel-Hudson spent his early years growing up in the West Texas town of Odessa. He attended UTA, studying music and English. During this time, he worked as a professional freelance trombonist and music instructor. At the age of twenty-nine, he left it all behind and moved to Kalamazoo, Michigan, to marry Julie Rummel. A year later, they had a daughter, Schuyler Noelle, and moved to New Haven, Connecticut, to work for Yale University. It was at Yale that Schuyler was diagnosed with Bilateral Perisylvian Polymicrogyria, a neurological condition that left her unable to speak.

Robert, Julie and Schuyler now live in Plano, where Schuyler attends a special class for children who use Alternative and Augmentative Communication devices. Rummel-Hudson's first book, Schuyler's Monster: A Father's Journey with His Wordless Daughter, tells the story of raising a little girl with a disability and learning to become the father she needs. The book was published in 2008 by St. Martin's Press.

An autograph party will follow his presentation to the Friends.

The best job ever

Seriously. Getting to chase kids around the museum? I'd only require the assistance of someone to keep me from slipping in the little pee puddles left behind.

Also? I'd be Schuyler's hero. For life.

(My apologies if you came here looking for political content. If it makes you feel better, you can pretend it's John McCain at a campaign stop.)

Politics of the Broken

As you might have noticed, unless you were busy redecorating that new rock you've been living under, the political scene in this country has gotten pretty nasty. I have no idea how the next two months are going to possibly go by without at least one candidate using the term "motherfuckers" on Meet the Press at some point. (Perhaps I should set my DVR, just in case.)

I keep seeing dubious "facts" being throw out into the mix (and honestly, I see it mostly from the McCain campaign, although perhaps that's just because I expect it from the Republicans and am thus activated to catch it when it happens), and when the opposition does some legwork and disproves the accusation, the party who originally threw the mud just leaves it stuck to the wall as if just saying it somehow made it true. The voting public is left with such a mess to sort through that they usually walk away in disgust and end up voting for the person with the best hair.

I hate watching that happen. I hate it more that I was almost party to it.

This morning, I received an email on an assistive communications discussion list I belong to. (Yeah, every day's a party in my depressing inbox.) The email claimed that Alaska Governor Sarah Palin was responsible for a SIXTY-TWO PERCENT cut in special education services during her brief tenure in office. I went online and did some cursory reading, and became convinced pretty quickly that it was true.

Here's what I found. The 2007 annual budget for the Department of Education and Early Development Special Schools in Alaska, which is overseen by the governor, showed the program funded at $8,265,300. This would have been approved prior to Palin taking office. The 2008 annual budget showed a reduction to $3,156,000, and the 2009 annual budget for that department showed the same. There's your sixty-two percent cut.

I was pissed. A lot of people were.

So I posted something on Twitter, which automatically posted a status update on Facebook, and before long I'd gotten a tiny little tornado going. I didn't have much time to spend researching the claim, since we had to take Schuyler to an eye appointment, but I kept thinking about it while I was gone. And the thing I kept thinking was how it simply didn't make sense.

Now, please understand something. For years, I had a bumper sticker on my old car that said "I'm too liberal for the Democratic Party". I find the Republican Party to be wrong in almost every area of policy, and furthermore I find their commitment to slimeball politics to be un-American. When the metaphorical Visigoths breach the walls of our modern day American Rome, it'll be the Republicans and their relentless polarization of our society unlocking the gates for them.

And the more I learn about Sarah Palin, the more I believe that she represents the most extreme positions of her party, to the point of becoming a cartoon villain. Here are just a few of her resume items:

-- As mayor of Bugfuck, Alaska, she tried to ban books and control media access to her staff. She also employed a lobbying firm and secured $27 million in earmarks for this town of fewer than 7,000 people.

-- The Alaska National Guard, her command of which is being touted as part of her executive experience, is experiencing such extreme personnel shortages that its aviation units are among the most poorly staffed in the nation; the Alaska Guard's top officer warns that the lack of qualified airmen has reached a crisis level and puts missions at risk.

-- She's deeply in love with the idea of drilling the shit out of her state of Alaska, doesn't believe in global warming and denies the viability of alternative energy solutions, saying that they "are far from imminent and would require more than 10 years to develop".

-- As part of her support for increased oil drilling in her state, Governor Palin sued the Bush administration in an effort to have polar bears removed from the list of threatened species. Polar bears! Who hates polar bears? It's a good thing puppies don't impede oil exploration.

-- Palin believe that Creationism should be taught in public schools and has frequently expressed her belief that Jesus Howard Christ needs to play a larger role in government. (Well, not literally; Jesus is a notorious slacker where civic responsibility is concerned. He dodges jury duty every time.)

-- As part of her deep Christian beliefs, she is opposed to abortion in all cases, even those resulting from rape or incest. The only unwanted pregnancies she's willing to give any ground on are ones in which childbirth would result in the death of the mother. Sarah Palin is very proud of her daughter for choosing to keep her baby (as if she would have tolerated any dissent), but she doesn't believe that anyone else should actually have that same choice.

-- Palin is a former director of "Ted Stevens Excellence in Public Service", an advocacy group for Republican women in Alaska. Stevens has been indicted by a grand jury for violations of the Ethics in Government Act. He is also out of his tiny mind, incidentally.

-- Most amusingly for me, as a citizen of the former Republic of Texas (which has its own very similar nutbags), Sarah Palin and her husband have very direct ties to the Alaskan Independence Party, a group that has advocated secession from the United States. (She addressed their party conferences in 1994, 2000 and 2008; her husband has been a registered member for ten years.) The party's founder, Joe Vogler, is a magical fountain of fun patriotic quotes: "The fires of hell are frozen glaciers compared to my hatred for the American government and I won't be buried under their damn flag."

So there you go. Governor Sarah Palin.

I don't feel much better about Palin's behavior as the mother of a child with special needs, either. The fact that she accepted a place on her party's ticket with a five-month-old baby with Down syndrome at the very least suggests that she simply has no idea what a hard road is waiting for her and the level of commitment that will be required of her. In an interview with People, she admitted that she didn't tell her children about her son's Down syndrome until after he was born because she wasn't sure how she felt about it herself.

"Not knowing in my own heart if I was going to be ready to embrace a child with special needs," she said, "I couldn't talk about it."

But that's the thing that didn't make sense to me. Everything I'd read about Sarah Palin suggested that she'd be a terrible choice as a vice president; indeed, she seems like a pretty poor excuse for a governor. But she did choose to have a baby with Down syndrome, and while that makes sense in light of her views on abortion, it also seems to fly in the face of the kind of disregard for disabled children that would seem to drive someone to cut their budget by sixty-two percent. The world is hardly lacking in examples of pious Christians whose opposition to abortion disintegrated as soon as they peed on the stick and saw the little plus sign. As much as it may chap her sanctimonious ass to admit it, Sarah Palin had a choice.

I couldn't escape the feeling that Palin did not seem to be the kind of monster to metaphorically throw special needs kids out on the ice floe and leave them to the mercy of cruel Nature. Perhaps I'm naive; I've certainly heard from plenty of Conservatives in the past year who believe that special education, and particularly mainstreaming, is destroying the educational opportunities for their own neurotypical kids. But still.

So I did a little more reading, and as it turns out, I was right.

So yes, the budget for the Department of Education and Early Development Special Schools in Alaska appears to have been cut by about sixty-two percent between 2007 and 2008. But if you look carefully, you'll see that one program, the Alaska Challenge Youth Academy, disappears from the budget during that time. Dig a little further, and you'll find that it's still there, but now as a separate budget item. So the money didn't get cut after all; indeed, it appears that she actually increased funding for that particular program.

There's a sort of community that exists, or seems to, among parents of special needs children. In the past I've referred to us as Shepherds of the Broken. Like it or not, I have been thinking all week, Sarah Palin just joined that group. She may not know it just yet, but it's a hard journey ahead, and the joy and political expediency of waving her baby in front of the cameras is eventually going to give way to some hard truths. The monsters that afflict our broken children don't care about your politics, and they don't make things any easier on parents who have money and power and handlers.

In her address to the Republican National Convention, a speech that was otherwise puerile and sarcastic (and trust me, I know what I'm talking about; I frequently traffic in puerile and sarcastic, although no one ever hails me as the second coming of Lincoln when I do it), Sarah Palin reached out to her fellow Shepherds:

"To the families of special needs children all across this country, I have a message for you. For years you've sought to make America a more welcoming place for your sons and daughters and I pledge to you that if we're elected, you will have a friend and advocate in the White House."

Well, I don't believe a word of that, but at the very least, I suspect that no matter what happens to Governor Palin, she and I are going to have plenty in common. I hope she's ready. I don't think she is, but then again, not many of us were, and we're still here and still fighting. Sarah Palin, your rubber sword is waiting for you.

American Promise

"You know, this country of ours has more wealth than any nation, but that's not what makes us rich. We have the most powerful military on Earth, but that's not what makes us strong. Our universities and our culture are the envy of the world, but that's not what keeps the world coming to our shores.

"Instead, it is that American spirit -- that American promise -- that pushes us forward even when the path is uncertain; that binds us together in spite of our differences; that makes us fix our eye not on what is seen, but what is unseen, that better place around the bend.

"That promise is our greatest inheritance. It's a promise I make to my daughters when I tuck them in at night, and a promise that you make to yours -- a promise that has led immigrants to cross oceans and pioneers to travel west; a promise that led workers to picket lines, and women to reach for the ballot.

"And it is that promise that 45 years ago today, brought Americans from every corner of this land to stand together on a Mall in Washington, before Lincoln's Memorial, and hear a young preacher from Georgia speak of his dream.

"The men and women who gathered there could've heard many things. They could've heard words of anger and discord. They could've been told to succumb to the fear and frustration of so many dreams deferred.

"But what the people heard instead -- people of every creed and color, from every walk of life -- is that in America, our destiny is inextricably linked. That together, our dreams can be one.

"'We cannot walk alone,' the preacher cried. 'And as we walk, we must make the pledge that we shall always march ahead. We cannot turn back.'

"America, we cannot turn back. Not with so much work to be done. Not with so many children to educate, and so many veterans to care for. Not with an economy to fix and cities to rebuild and farms to save. Not with so many families to protect and so many lives to mend. America, we cannot turn back. We cannot walk alone. At this moment, in this election, we must pledge once more to march into the future. Let us keep that promise -- that American promise -- and in the words of Scripture hold firmly, without wavering, to the hope that we confess."

-- Barack Obama, August 28, 2008

One reason I'm becoming hopeful again, against my better judgement

Like a Father

Hudson boys
Originally uploaded by Citizen Rob

It all started with an email from my brother, with a link, some quoted material, and a question.

"Do you remember this guy?"

I'm not going to quote it directly. After I contacted the poster, identified myself and asked if we might talk, I received a delightful message from the board administrator, reminding me in that all-too-familiar "master of my online turf" way that posts on his forum were protected by copyright and could not be used in my next book without permission.

I am actually aware of how that works, oddly enough. And yet, I was tempted to quote it here in its entirety just the same. I feel a certain amount of personal ownership over the information. Go read it yourself and see if you can figure out why.

If you can't go see that, or if it disappears for some reason (although I guess that might solve the whole copyright issue), here's a short paraphrase of the material, posted on an epilepsy support forum in a thread about personal heroes.

The poster, whom I'll call David since, well, that's his name, tells the story about the hard days he experienced in junior high school. In addition to his health issues, David didn't know anyone at his new school and got picked on a great deal. He was eventually taken under the wing of the ninth grade track coach, who made him the manager for the track team. David described this coach as a real friend. The coach taught him everything he needed to know about being a track manager, was patient with his mistakes, gave him advice and even paid for his meals on road trips. This coach, he said, "became my second father". David's story ends sadly, when the coach died halfway through the year. At the funeral, the coach's wife told David that her husband always spoke of him like a son, and made sure that the pastor talked about him during the eulogy. At the end of the year, David won an award for the student who had the most success in the ninth grade, thanks to the nomination of his track coach and surrogate father.

And that, he concluded, is why his personal hero is Coach Bobby Ray Hudson.

Well. I didn't see that coming.

For the record, my answer to my brother's question was no, I didn't remember this guy, for a number of very good reasons. First of all, I was in college by this time. I hadn't seen my father in about four years; indeed, I wouldn't see him again until the funeral, which I don't suppose actually counts.

Furthermore, I didn't hear about my new little brother from my mother because she's not the wife that David is referring to. That would be the woman my dad married after he left my mom when I was in high school. None of us actually knew very much of what was going on in his life, because he had very intentionally and meticulously removed us all from his reality. After he died, we discovered just how true that was. His last will and testament stipulated that everything was to go to his new wife, which was hardly a surprise, but in the event that she did not survive him, everything would then go to her adult son, a police officer whom we didn't even meet until the the day before the funeral.

It's been eighteen years since my father died, and yet I find that he still has the power to confound me. After going to such great lengths to shed his family, why, at the very end of his life, did he suddenly feel compelled to be the kind of father that he never was before? Did he feel regret? A chance at some kind of redemption, but without the hard work it would have taken to make things right with us?

I never knew my father to be someone with a great deal of compassion, certainly not for the little six-year-old boy with whom he couldn't communicate except with the back of his hand. Had he found it at the end? I'd always wondered what my father would have thought of Schuyler. Judging from what I knew of him, I always suspected that he would have had a real problem dealing with a kid with a disability. Now? I'm not so sure. This chance encounter with a total stranger almost two decades after my father's death has changed everything.

I am acutely aware of the timing of this revelation, at a time when I am beginning work on a book about this very topic. Some writers search with great effort for their subjects. So far, mine seem to be finding me.

Priorities

According to CNN, human rights organizations are reporting that more than 200,000 children were spanked or paddled in U.S. schools during the past year. My own state of Texas leads the pack, with 48,197 students. Well, of course it does.

Now, we can have the discussion about the morality and effectiveness of hitting kids if you like. I'm always ready for that topic, after all. I am very encouraged by the fact that the numbers are down, and that a number of states and school districts have outlawed corporal punishment altogether.

But one line in this report jumped out at me, hiding about halfway down.

In addition, special education students with mental or physical disabilities were more likely to receive corporal punishment, according to the ACLU and Human Rights Watch.

Even if you're one of the people who think that hitting a child is a good way to discipline and to educate, or perhaps especially if you believe that, I'd like you to stop for just a moment and think about that. I'd like for you to close your eyes and imagine how that scene might unfold.

Meanwhile, what's the topic of the most vocal outcry from disability advocates of late? The use of the word "retard" in a movie.

I don't know. To my thinking, those priorities seem sort of, well, you know. There's probably a word for it. I'm sure you can think of one.

Pet monsters are a lot of responsibility

Ice Girl, Ice Daddy and Ice Bat
Originally uploaded by Citizen Rob

Okay, so let's talk about People First Language.

I've seen it presented as a sort of universal truth, as if the rightness of People First Language is a given, with little room for argument. People First Language must be used, I read time and time again, like a moral imperative. The heartfelt and dedicated advocates of People First Language want very much for it to be accepted as a standard practice. Indeed, they often insist on it. But it's not universally accepted, although people who find it troubling are often nervous about discussing why. I'm a little nervous about writing this, to tell the truth, and we all know what an ass I can be.

The idea behind People First Language is simple, and inherent in the name of the concept. It puts the person first, allowing their basic existence to define them before their disability. People First Language describes what the person has, but not who that person is. By these rules, I am not a diabetic. I am a guy who has diabetes. The thinking behind People First Language says that identifying a person by their diagnosis can generate fear and pity, and works against the goal of inclusion. People First Language grants a person dignity, the thinking goes, by blunting the impact of their diagnosis on that person's self-image, and also in how they are perceived by the world.

"It's not 'political correctness,'" writes People First Language advocate Kathie Snow, "but good manners and respect."

Perhaps. I do see the point, and insofar as I think these kinds of perceptions are important issues, I can see some of the benefits of People First Language. I don't want Schuyler to be hurt by the world around her, and I certainly don't want her disability to make her feel like there's something wrong with her.

But here's the thing. As hard as it may be to admit this, there is something wrong with her. And admitting that she's broken on some level is difficult, and it feels harsh. But it's a harshness that comes from somewhere else, from whatever power you think hands out that kind of Very Special Gift. God if you believe in him, Fate if you don't, or just random shitty luck if that's how you roll. And the thing that it's easy to miss, because the idea breaks my heart too, is that no one is more aware of Schuyler's disability than Schuyler herself. When you think about it, that seems obvious, but for those of us who love her and care about her, it might be much easier to accept if we could adopt language that takes some of the sting out of her reality.

People First Language attempts to soften the language that we use to describe disability, and I understand why that's tempting. But in doing so, it doesn't blunt the monsters, not even a little. If you say, as People First Language instructs, that a paraplegic is NOT confined to a wheelchair or is NOT wheelchair-bound, but instead refer to them as "an individual who uses a wheelchair", you have taken away that wheelchair's power over that person in perception only. It even implies choice, at least in my opinion. I use things, and I use parts of myself, with intent. I don't think I'd say I use my heart, or my kidneys, because I am not given a choice, but I do use my legs. I choose to use them, and I can choose not to.

That sounds like I'm being obvious and glib, but it bothers me, and for some very real reasons. Because when you take away responsibility from the monster, who are you going to give it to? When you say that a person uses a wheelchair, you are setting up ownership of that disability. The monster doesn't have you. You have the monster.

But do we really want to hand ownership of that disability to a child who is struggling to understand their place in the world? Does handing responsibility for a disability over to the child give them an unreasonable sense of their own role in the possession of that disability? If you're using a wheelchair, then why not just stop? If that sounds silly to you, ask a now-grown child of divorced parents if they still, even if only in their secret hearts, take some measure of responsibility for their parents' breakup. Ask an adult with a disability if they ever wondered as kids what they did to deserve their situation. Ask them if they ever wonder that now.

If Schuyler isn't "non-verbal" but instead "communicates with an assistive technology device", then why? Why would she do that? If Schuyler doesn't feel like she is in the clutches of a monster to whom she brings the fight every day, that's great and my biggest dream made real. But if she then comes to the conclusion that she owns that lack of speech, then what can be the reason for its persistence? Is she not trying hard enough? Why isn't she fixing the issue herself? If she's not broken, then what's the problem? Lack of motivation? Is she simply not good enough? Not strong enough, or smart enough, or brave enough?

Schuyler as the victim (another word forbidden by People First Language) of Fate and its monster minion, as sad as that may sound, is infinitely preferable to Schuyler as the product of her own subtly-implied failure. I simply won't have it, any more than I'll have the idea of "acceptance" stand in the way of her hard work, and of ours. To my thinking, People First Language sets up an unreasonable expectation, taking the responsibility away from unfair forces at work in the world and instead laying it squarely at the feet of the very last people in the world who deserve to wonder if they somehow had this coming.

And don't even get me started on the ridiculous and unwieldy term "nondisabled" to describe neurotypical or "normal" people. That should offend anyone who loves the English language.

Listen. I get why people use People First Language. I understand the push to bring sensitivity to an often cold world. That's something I fight for as much as anyone else, after all. I wrote an entire goddamn book about it. But please try to understand, people. Don't just try to make it feel better. Don't blur the lens, don't make pretty words do the duty once performed by ugly ones.

"Retard" is an offensive term, I think we can all agree. But in its own way, I find "differently abled" or even "special" to be far worse, because they minimize the struggle. They allow the rest of us to sigh and wipe away a tear while we watch some very touching report on the Today Show, and then say "Wow, thank you Meredith, for showing me the story of that brave little trouper!" And then we go on with our lives, knowing that someone is watching out for that precious little angel. Someone like Jesus, perhaps, or one of his dedicated soldiers on earth.

Or someone like me. Or you. Or no one at all, no one except the person who lives their life confined to a wheelchair or suffering from a debilitating condition that makes a nightmare out of the things that you and I take for granted, the everyday tasks and activities that give us our humanity, and can rob us of it when they are taken away.

I helped Schuyler take a preliminary eye test today, in anticipation of an hour-long appointment later this week for the glasses that she'll apparently be getting soon. I held her device for her while she identified the letters on the wall that she could read. She did a great job, and I was incredibly proud of her. She's making her way in the world, and she'll continue to do so with determination and enthusiasm and even optimism, but she'll also do it with a big dose of "fuck you" when needed. And she's not going to get that from People First Language. Kind words aren't going to open any doors for her, not a one. They might simply make her feel like a failure for being unable to open them herself.

Ultimately, People First Language feels to me like it exists not so much to help broken children like Schuyler, most of whom I suspect are tougher and more pragmatic than the people who love them perhaps realize. I think it works mostly for the people around them, those of us who aren't afflicted and yet lead lives forever changed by disability.

People First Language probably makes that life a little easier for the rest of us to bear, but honestly, I'm not sure it should be easier for us. In that respect, I'm not convinced that People First Language is putting the right people first.

Speechificationalismness

Okay, I put my keynote address to the Assistive Technology Cluster Conference online.

Please keep in mind that it was delivered to a gathering of special education teachers, speech pathologists, occupational and physical therapists, school administrators and some parents of kids using assistive technology. It was also written with the (probably safe) assumption that most of them had never read the book or this blog, so there's material that may obviously seem familiar to you.

Oh, and also, I had a time slot of over an hour, so if it seems long to you as a reader, imagine how I felt. That's a lot of jabbering for one old man.

Monster Slayers' Ball

Big Head Schuyler (and her Monster)
Originally uploaded by Citizen Rob

Do you want to know a moment when this whole fancy pants book thing felt a little extra real recently? When I made a joke and about five hundred people laughed.

I gave the keynote address at the 2008 Assistive Technology Cluster Conference in Richardson, Texas last week. This is something that has been in the works for a while, and I was excited about it, in a "they want me to speak for how long?" sort of way. Excited, with a "good thing a wore my brown pants" element of terror mixed in.

I don't want to sound like I am tooting my own horn here, but honestly, I think it went really well. They laughed at my jokes (Looking for an easy laugh when talking to special educators? Make fun of No Child Left Behind...), almost no one left while I was talking, no one booed or threw anything at me, and when it was over, some of the people who came up to talk to me had been crying. There's nothing like seeing someone's runny mascara to make you feel like you got it right as a writer. I was more concerned about my delivery than the actual text, but I got through it without stammering too much or dropping any random F-bombs, so all in all, I'm pleased with how it went. Perhaps I'll put it online.

(Edited to add: Done.)

As is usual with this book and the appearances we've made, however, the real star was Schuyler. I put together a PowerPoint presentation (actually, on Apple's very cool Keynote software; imagine Powerpoint's hotter, sluttier sister) that was heavy on the Schuyler images, and that was a wise, if not particularly unexpected, move on my part. When I mentioned Schuyler's ability to communicate her defiance without words, the image on the three big screens got what was probably the best reaction of the whole speech. As hard as I work to represent her in my writing and in my advocacy, Schuyler speaks for herself best of all.

When my speech was over, the organizer of the conference invited Schuyler to come up to the front. In this huge room full of adults, Schuyler looked tiny and fragile to me, but she strode to the front without hesitation in her little black dress and newly-reddened hair, took the microphone and said, with confidence and almost comprehensibly, "Hi everyone!"

And THAT, my friends, was the best part of my keynote address.

The conference itself was fantastic, and very eye-opening for us. They gave us a table in the too-small exhibitors' hall, where we signed books and met teachers and parents and, most importantly, other people who were using assistive technology like Schuyler's Big Box of Words. These were young people with disabilities much more severe than Schuyler's, to the point that they had to struggle many times just to put their words in order. And yet, I don't think I can adequately describe how powerfully affecting it was to watch them navigate on their devices and communicate in full sentences, with complexity and nuance and humor. It gave me, and Schuyler most of all, a lot to consider where her own device usage is concerned.

One of the most fascinating parts of the conference for us was seeing exactly how much work is being done by some very smart people to advance the technology that kids like Schuyler are using. Prentke Romich, makers of the Big Box of Words, were well-represented, as usual. I'm always amazed at the people who work for that company, not just by how smart and committed they are to their work, but also just by the humor and confidence they exude. Two of their reps were device users themselves, and they were kind enough to come talk to Schuyler from time to time on their devices. You can probably imagine how weepy I became, on more than one occasion.

There were other companies represented, and a lot of very innovative technology on display. I came away with a lot of ideas and thoughts, some of which I'm going to share with PRC soon. The whole thing made me think about this in whole new ways.

But most of all, the thing I took away from this conference was an appreciation for the work that all these people are doing. Teachers, therapists, administrators, parents, advocates, all of them. When I looked out at that audience, the thing I felt most of all was humbled (and how often does THAT happen?). I was standing in front of the people who have made it their life's work to help kids like Schuyler.

Early in my speech, I said:

It might be the most striking difference between our experience with the world of broken children and yours. As special educators and experts in assistive technology, you have sought out the monsters. You’ve armed yourselves with the knowledge and the tools to fight them, and you’ve gone into battle with your armor in place. For parents, the monsters have found us, in most cases sitting by the campfire in ignorant bliss, totally unprepared.

There’s a transition that special needs parents go through, and it’s one that I suspect never completes itself entirely. We go from seeing sad stories about kids with disabilities on television and saying "I can’t even begin to imagine how those parents deal with that" to becoming the parents who face it with our kids and for our kids. We learn quickly to conceal our fear, which is very great, and our self-doubts, which are many. We take hold of whatever we need in order to find that extra strength, whether it’s God or friends and family or a good stiff drink, and we draw our rubber swords. When we get to the battlefield, we find… you. You’re already there, our generals and our scouts, and you know the lay of the land. We’re not ready when we get there, not quite, but we will be soon enough. Once we get past our denial and our mourning for the child we always thought we’d have, we devote ourselves to the complicated, broken but equally wonderful child in its place. No one in the world is a quicker study than the special needs parent.

I've learned so much over the past few years, most of it about myself and my own capabilities, and all of it from Schuyler. Being there in front of those amazing people and being able to share my perspective with them was one of the singular honors of my life. And that's the truth.

The girl in the window

The Girl in the Window (St. Petersberg Times)

I don't have much to say about this, really. I'm not sure what there is to say. But I thought this was important, and if you trust my judgment and if you have ever been touched by Schuyler and the strange, internal world that she sometimes occupies but now has the tools to leave when she wants, then please go read this story, of a little girl who lives in that world permanently, and the horrible reason she got there in the first place.

(via Dooce)

-----

UPDATE, 8/13 - They've posted a follow-up article.

Passing of a Perpetual Exile

Aleksandr Solzhenitsyn
(1918-2008)

I've always had a deep love of Russian culture and history, and I have always counted three great contemporary Russians among my own personal heroes. Dmitri Shostakovich died in 1975, and Mstislav Rostropovich died last year. News from Russia tonight; Aleksandr Solzhenitsyn has died at the age of 89.

I won't go into the particulars of Solzhenitsyn's legacy. The New York Times obituary I linked yo above is a pretty exhaustive one, and if you're not familiar with Solzhenitsyn, I hope you'll take some time to read it. Neither A Day in the Life of Ivan Denisovich nor especially The Gulag Archipelago are easy summer reads; indeed, I can't imagine very many people outside of Russia have read Gulag in its entirety. But you don't have to read much; like Holocaust history, the story of Stalinism (which hardly died with Stalin, or is dead even now) and the Russian terror state is probably too big for one person to encapsulate it. But Solzhenitsyn must have come close.

For me, there are two great chroniclers of the cruelty of life in the Soviet Union. Shostakovich showed us how it felt, and Solzhenitsyn told us how it was. The world is infinitely the poorer for his passing.

That one percent feels like a universal truth

When I've got some time, I'm going to write about the conference at which I spoke yesterday, which was an amazing and eye-opening experience, for Julie and me both but particularly for Schuyler.

Until then, however, I wanted to share something exceptional that I read this morning, a post on Jennifer Groneberg's blog. It seemed especially appropriate, given recent sobering events in the special needs community.

Among other things, it addresses fear, and does so in an unblinking way that really resonated with me. I am always happy to have the discussion about gentle terminology and inclusive language (which has come up again, not surprisingly), but this is a good example of exactly why I prefer direct language. Sometimes the monster is just plain scary, and calling it something besides a monster just doesn't do the job.

Thanks, Jennifer, for posting this.

"Hard times give me your open arms..."

Sometimes sadness feels distant, like Third World suffering. And then there are the times when it hits close to home.

Noted writer and special needs advocate Vicki Forman unexpectedly lost her son Evan this week. The subsequent torrent of sorrow and shock that have been moving through the online community of special needs parents and advocates speaks to the immediacy of Vicki's writing and the positive effect that she and her son have had on others who are trying to make their way in a world of silent monsters.

It also speaks to the quiet fear that so many of us carry through our lives. After I left a heartfelt but probably inadequate message on Special Needs Mama expressing my condolences, Vicki was kind enough to write to me. In her message, she mentioned the thing that we both knew already, the thing that all parents of special needs children know but rarely speak of, even amongst ourselves. It exists behind the inspirational stories and the moments that allow everyone to believe that strong people who fight the good fight will always triumph in the end. She referred to it as "a vulnerability that is unmentionable," and in Evan's case, it became more than he could bear.

It lurks, the biggest monster of them all. It watches and it waits, and sometimes it takes advantage of that moment of vulnerability. What it leaves behind in the short term is chaos. It leaves fear and a cold truth for those of us who live our lives, even on the best of days, casting brief but troubled looks over our shoulders. And for parents like Vicki, it leaves a pain that I can't even begin to imagine, although of course I've imagined it plenty over the last five years.

The thing is, however, it doesn't end there. People who have known me for years can attest that I am not the same person I was before Schuyler came into my life. Most parents are changed by their kids, but I'll go out on a limb just a bit and say that the parents of broken children are changed even more profoundly than most. Evan was just about Schuyler's age, and the years that Vicki and her family had with him have undoubtedly left them all different people than when they began this trip together. In Vicki's case, her writing and her advocacy over the years have allowed Evan to change a lot of people as well. I hope that when the pain has dulled a little bit, she'll see just how much he left behind, and what a legacy she has allowed for him.

As cliched as it may sound, that's how kids like Evan never die. Small comfort today, but true nonetheless.

---

Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

On Michael Savage and Other Monsters

Before I begin, let's look at what exactly was said last week by Michael Savage, talk radio host and celebrated caveman:

SAVAGE: Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden -- why was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], "When the nurse looks at you, you go [fake cough], 'I don't know, the dust got me.' " See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.

What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." The worst thing he said -- "Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry." That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have.

I had no intention of addressing the whole Michael Savage issue here or anywhere else, mostly because what he said was pretty clearly stupid, but also for the simple reason that autism isn't my issue. I occasionally have disagreements with parents of autistic children, and in most cases it boils down to the fact that Schuyler is not autistic. Her condition does not in any way manifest itself like autism, not even her lack of speech, and my beliefs in how she should be cared for, how I refer to her condition and my expectations for her future are completely different from theirs. I have the utmost respect for these parents, and I like to think that the fight I bring on Schuyler's behalf will benefit them just as much. But still. Not my fight, not directly, anyway.

But then I followed a link that was showing up in my stats, and I found a discussion of Savage's remarks on a parenting forum. I found the link back to my blog, and to my irritation, it was in a post by someone who, while disdaining the manner in which Savage expressed his opinion, nevertheless defended his point about how kids are supposedly being over-diagnosed with autism by pointing out that Schuyler was originally misdiagnosed as being on the autism spectrum. You may be reading this blog for the first time right now, as a result of following that link.

So let me say a few things briefly and clearly. First of all, yes, it is true that Schuyler was misdiagnosed, by the Child Study Center at the Yale Medical School, with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS, or as I liked to call it, for its vague and unhelpful description, "PDD-WTF"), an autism spectrum disorder.

But I also think it's important to note that Schuyler's actual condition, Bilateral Perisylvian Polymicrogyria, is extremely rare, with perhaps as few as a thousand identified cases worldwide, and without the MRI that Schuyler eventually received, there was no way to identify what her monster really was. It was unlikely, even at Yale, that anyone was going to immediately get it right, particularly without a brain scan. Furthermore, we pushed for more tests when that diagnosis felt unsatisfactory, and those tests were granted without any resistance because her doctors agreed with us. Her misdiagnosis only stood for a few months, and was suspect from the beginning.

In other words, I don't think Schuyler's misdiagnosis is very helpful anecdotally. Are children being diagnosed prematurely with autism spectrum conditions? I have no idea; my kid isn't autistic, and even when she received that diagnosis, I don't think anyone ever seriously thought she was. I can't speak to how autism is being identified by doctors.

I do think, however, that it is important to realize that yes, autism is a serious, legitimate medical condition and one that affects thousands of families in ways that I can't even begin to fathom. Furthermore, I can't imagine there are really non-deranged people out there who believe otherwise. If there are people out there ready to put forth an intelligent argument in defense of that position, Michael Savage is not one of them. He's a buffoon, and I'm pretty sure he knows it.

Having said that, I don't believe he should be silenced for expressing his opinion. Typically, free speech only truly requires our democracy's defense when it is denied to the assmonkeys of the world; logical or popular positions (and why are they so rarely one and the same?) can usually take care of themselves.

Still, it's nice to know that sometimes the marketplace responds appropriately.

Big Box of Inappropriate

Schuyler and the Big Box of Words
Originally uploaded by Citizen Rob

Has it really been almost two weeks? I apologize for the silence. I've been working on a lot of things and it's kept me busy. "What are you writing these days?" I get asked a lot. Well, I have not one, not two but three speeches to write this summer, including a keynote address for this conference on technology in special education in which I have an hour and a half allocated for whatever I plan to say. An hour and a half. I predict lots of Powerpoint and perhaps a puppet show.

Summer with Schuyler continues to be sort of hit and miss, to be honest, although it's still a vast improvement over previous summers when she was being watched by snotty know-it-all college student interns working for the school district. (I still remember the 19 year-old tool who, when told that Schuyler needed to be encouraged to use her device, disagreed and backed up his position with "I am a psychology major...")

As much as she must love hanging out in the office with her forty year-old father, she's missing her school friends and it's beginning to show. We keep trying to arrange play dates with some of her AAC classmates, but everyone's busy during the summer (what is this word "vacation" of which you speak?) so it's hard to put together. She's got her cousins and a few neurotypical kids that she sees now and then, but I think that as much fun as she has, it still serves as a reminder of her brokenness, and as an eight year-old, she's not as in love with being different as she might have been once.

We've been trying to learn a new word in sign language every day, and she's shown some excitement for that. I think part of her enthusiasm has come from the fact that I've been letting her choose the words, which has led to such useful words for everyday use as "robot" and "bat" (on the day The Dark Knight opened, and no, I didn't take her to see it). Now that she's beginning to enjoy learning new words, we may start trying to sneak some useful ones in from time to time. Not that "robot" isn't a solid daily vocabulary tool.

The Big Box of Words remains her primary form of communication, however, or at least our main focus. One way of firing up her enthusiasm for it has been to add things to it that she and I say when we're teasing each other, which is, well, pretty often. We already added a little rhyme from my childhood that I taught her a while back to say when people eyeball her in public, so her device will now say "Stare stare, booger bear. Take a picture, I don't care." (When she's old enough, perhaps she'll replace it with "What are you looking at, assmonkey?") At lunch yesterday (at a Mexican restaurant, naturally), she asked me to add "Beans, beans, the magical fruit. The more you eat, the more you toot." Clearly, I am a fine, fine influence on my child. Her teachers are going to be so proud.

Speaking of which, last week Schuyler wanted to use her device to call me a "monkey fart" (honestly, I don't know why Julie teaches her these horrible things), and lo and behold, the Big Box of Words did not have the word "fart" programmed into it. You can probably see where this is going.

Twenty minutes later, Schuyler had a new subdirectory on the BBoW listing words associated with, well, bodily functions. Say what you will about the beauty of language and creating an appropriate and enriching environment for a child, but come on. An eight year old who can't say "fart" or "burp" or "booger" is not a complete human.

And honestly, just assigning icons to her new words made it all worthwhile.

Did I mention that I'm the keynote speaker at a professional educators' conference? I did.

No Blue Fairy

Schuyler
Originally uploaded by Citizen Rob

The Big Box of Words has been such a positive thing for Schuyler and her future that I think I usually fail to give a completely balanced picture of the ups and downs that accompany her experience with assistive technology.

Of late, she's had something of a rough time with the BBoW. There are times, especially during the school year, when Schuyler really seems to dig the device and the very unique place she has in the world because of it. Lately, though, I think it's just pissing her off.

Part of the issue is summer. No school, no peer group of device users, and no structured classroom environment. Just her smelly old parents and lots of activities that are not even remotely BBoW-friendly. She loves to swim, for example; she has never willingly left the pool without at least a grumble or a plea for five more minutes. She'd stay in her swim suit all summer if she could, her device hidden safely away on dry land. For the Fourth of July, we went camping with my brother's family, and I can count the times I saw her use the device on one finger. I know because I made her do it, and while it wasn't exactly under protest, she definitely did the bare minimum required.

We've decided to try to vary her techniques a little, stepping back up to the sign language plate again, for example, as a parallel technique alongside the device. Schuyler's condition limits her fine motor abilities in her hands and thus keeps her from being truly skilled at signing, but that never kept her from having real enthusiasm for it. She learned most of her signs from the early Signing Time videos, which I think I've discussed before, and now that they're on PBS, the DVR catches new episodes every now and then and we all sit down and learn them together. Her signing is limited by her own monster-stifled, clumsy fingers and by the limited number of people who can understand her. Nevertheless, signing still presents an elegant way to speak that the Big Box of Words simply can't match, at least at this point where she's still constructing sentences and thoughts at a necessarily slower, sometimes maddening pace. She understands the necessity of the device, but I think she sees the beauty of sign language in a way that I am only now appreciating myself.

Recently, Schuyler has begun to outwardly express her own awareness of her monster. She has this thing she does now to explain it, a whole story told in gestures and sign language. She gently touches her throat and shakes her head. She then touches her head with her finger (the sign for "think") and draws a line down to her mouth, signifying how the things she wants to say don't make the trip from her brain to her mouth. I like how she recognizes that her voice is broken, but her mind is working. It's important for her to know that her thoughts are there, and they are magnificent.

The thing about this little mimed explanation of Schuyler's condition, however, is that no one taught it to her. It's all hers. While some people worry about how to tell her what's wrong with her and how to explain it in gentle terms that won't bruise her delicate psyche ("Don't call her broken!"), Schuyler has figured out her own harsh reality by herself and expresses it without a hint of self-pity or trauma. Schuyler knows her monster better than any of us; it's presumptuous for anyone else, even me, to pretend we understand it, too, or to think that we can somehow tell her something about it that she doesn't already know on some visceral level.

Lately, Schuyler has balked a few times in public at using the Big Box of Words to answer other people's questions, and the sense that I get from her is that she may be starting to feel, if not embarrassed, at least self-conscious about it. Schuyler may delight in being a weird little girl, but only when it is on her terms. A speech output device still represents her very best (and possibly only) chance of being able to spontaneously communicate any kind of real expressive thought, but it remains an unnatural way for a little girl to speak. I suspect the day is coming, and soon, when her desire to be "normal" is going to cause some serious heartbreak for her.

There's one literary figure with whom I have always associated Schuyler, although to even say it aloud breaks my oft-broken old father's heart right in two.

In her own very unique way, Schuyler is Pinocchio.

"A Good Read"

(I swear to God, I thought I mentioned this already. I believe it was in the Father's Day post that got scrapped when I wrote about Tim Russert instead. My brain is apparently turning into pudding. Welcome to thirty-ten. Now get off my lawn.)

A few weeks ago, Naomi Shulman, research chief at Wondertime Magazine, wrote a very nice recommendation for Schuyler's Monster titled "A Good Read". I was of course happy to get a good review; it sure beats the alternative of a bad one or even worse, none at all.

I was especially touched to get yet another positive mention in Wondertime because they've been so supportive and great about my book. They featured a lengthy excerpt back in their March issue, which is nice online but looked absolutely breathtaking in its print layout. I was also interviewed by Naomi for a follow-up interview on the website. Wondertime has been a good friend to me and my family from the very beginning.

It's especially nice to have this coming from Naomi, who was an exceptionally pleasant and professional interviewer and who has been following Schuyler's story since before her diagnosis. I keep discovering over and over again how deeply Schuyler has touched so many people, and how the connections she's made through her story circle back around to us again and again.

So thank you, Naomi. This means the world to me, and that's the truth.