July 20, 2008

Big Box of Inappropriate

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.

July 8, 2008

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.

July 1, 2008

"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.

June 29, 2008

Vox monstrum


BBoW
Originally uploaded by Citizen Rob
Sunday mornings are usually pretty relaxed around here. We don't go to church, the Baby Jesus keeps us from having Chick-fil-A and neither of us ever work on Sundays, so we usually get up late and have a lazy breakfast around the apartment. It's nice; even if we've got lots to do, it can all wait.

The three of us were sitting on the bed in our pjs, and Schuyler had her Big Box of Words with her so she could tell us about the beach in Connecticut. This naturally led to the topic of mermaids, as most conversations with Schuyler eventually do. When, in the midst of our discussion, we informed her that a boy mermaid was actually a merman, she asked me to add it to her device. Julie left us to our programming fun.

While we were adding words and making changes to the device, Schuyler and I ended up somehow on the voice settings, where the BBoW user can select the voice that she wants to represent her. There are maybe a dozen different voices, male and female, but there's only one (named "Kit") that sounds specifically like a child's voice.

Kit has been Schuyler's voice all along, and in a weird sort of way, it has become her recognizable voice to me. When we were being interviewed for public radio a few months ago, Schuyler thought it would be funny to reset the voice settings so that instead of little kid Kit's voice, the box suddenly sounded like some kind of menacing robot invader from Mars. She thought it was great fun, of course, and I found the experience surprisingly upsetting. Kit had become Schuyler's voice to me, and in some respects at least a part of who she really is on a fundamental level.

This morning, as I showed her the different voices and how they could be tweaked by changing the rate of speed, the pitch and the variance of pitch (ranging from robotic to Shatneresque), Schuyler grew very interested. She pointed to the device, and then to herself. Since we were in the settings mode, she had to speak with her hands.

She held her hands far apart ("big"), drew her thumb across her cheek ("girl") and then pointed to her throat ("voice").

Schuyler wanted a big girl voice.

We've been trying to push her to use the device this summer and have met with success, at least much of the time. We've always encouraged her her to take ownership of the BoW, adding words and changing pronunciations at her request. Now she was asking for a major change, and one that was very, very personal, both for her as a user and for the rest of us who interact with her every day.

We sat and spent a good half hour going through the different choices, and she finally chose "Ursula", which we then tweaked to bring the pitch up to a slightly more girlish sound and to add a bit of lilt to its patterns. What she ended up with was a voice completely customized to her wishes.

Broken children grow up like everyone else, although perhaps in ways and via paths we never anticipate. Schuyler has a big girl voice now. I only wish the rest of her big girl transformations were going to be that easy.

June 25, 2008

Summer monsters


Three little monsters
Originally uploaded by Citizen Rob
It's been a while since I've really had much to say here. I haven't been staying away because of any great tragedy. I've just felt, I don't know. Quiet, I suppose.

The early days of summer have been different this year, for the simple reason that we've elected to keep Schuyler at home with us rather than handing her over to another summer program. I feel like I got adequate practice writing angry emails to administrators last summer, after all. The one thing her summer programs have had in common for some time has been the lack of progress she's made on her Big Box of Words. When she was at the YMCA, she never used it because they were constantly playing hard and swimming and having fun being feral kids on the go go go. Last summer, she didn't use it because the people taking care of her were too busy searching for a quarter for the clue bus.

So now she spends her days with one of us, mostly me since my boss doesn't mind her coming in to the office. I think she actually brightens the place up when she's there; the associate dean went out of his way to tell me how much he enjoys hearing her playing in the next room. She brings in toys (sometimes her fairies, other times her big slobbery monsters) and draws and watches movies on my laptop, and the summer session at the university doesn't seem so ghostly. During the hour-long commute, she jabbers away and watches the world going by with interest.

The more time Schuyler and I spend together, the more conspiratorial we become, which is nice, at least for us. When she has her monsters in the car with us, she asks for me to play the "monster mix" I made for her on the iPod (consisting of music from monster movies like Cloverfield and King Kong and Jaws and War of the Worlds), and we drive along pretending to devour the people we see on the sidewalks.

"Daddy!" She says. "Eat that guy!" Which of course I do. When she eats that guy, she only eats half, handing me the rest. She's a very generous monster.

A few weeks ago, her cousins came to stay with us. One of them, almost exactly Schuyler's age, is a smart kid, almost scarily so in fact, but he's also trusting in a way that is perhaps unfortunate when he's got an uncle and a cousin who spend so much time trying to trick and scare each other. (For instance, he now believes that I know a deadly martial arts move called the Monkey Paw, which I can't teach to him because unlike me, he only has ten fingers. Something to think about if you are considering asking me to watch your kid.)

Schuyler invented something called the grass monster a few months ago, a krakenesque creature lurking under the surface of the lawn who will grab you if you walk on the grass. When her cousin came to stay, Schuyler played grass monster all weekend, and I fleshed out the story for him until the grass monster had reached legendary status in our house.

Once he returned to Arlington, he googled "grass monster" and "arlington" from time to time, and always bragged to me when I saw him that there wasn't a grass monster in Arlington. Thus, he was safe. So really, in my own defense, I think a case could be made that some things are just inevitable. (He called me yesterday morning to give me the news.)

Julie's summer has been a little rocky, mostly on account of her work situation. I've worked in a bookstore in the past, same as her, so I know how petty and ridiculous the environment can become, particularly during the slow summer months when people grow bored and restless.

Still, it pains me to watch her deal with a work environment that increasingly resembles nothing so much as junior high school, with a paycheck. I don't write much about her here, for reasons that have been made clear before, but here's what you need to know about Julie, something that people who truly get to know her already understand.

Julie works very hard to maintain a positive and friendly attitude when she's at work, not just having a professional attitude but being open and friendly and funny as well. When she finds herself having to guard herself against petty people taking advantage of that, it does more than cause her to come to work and behave like a retail automaton.

It takes away her refuge, a place where she can go to escape the fact that the light of her life, the little girl who means every bit as much to Julie as to me, is living a life under threat, where every perfect moment has possibilities hanging over it that could snatch everything away in a moment.

I recently read a report of another kid with polymicrogyria, this one closer to Schuyler's age, whose life was suddenly and cruelly snatched away by seizures, the ones that Schuyler has yet to suffer but which hang over this family like a cloud. The possibility of meeting that one last terrible monster isn't something for Schuyler to fear, but her peace belongs to her alone. I can't afford to drop my guard, ever.

And neither can Julie. I write so much about Schuyler's monster that no one ever forgets the thing I live in fear of. I wish the people in her life would remember Julie's anxiety, though. It's her monster, too.

June 23, 2008

Sadness in seven words


Well, shit, piss, fuck, cunt, cocksucker, motherfucker, and tits.

Goodbye, George...

(Edited to add the explanatory link, which I seriously, SERIOUSLY can't believe I needed to do.)

June 17, 2008

Writing about writing about writing



Originally uploaded by Citizen Rob
Sorry I've been feeling sort of quiet these days, but you know how it goes. I have been talking to other people behind your back, however.

Over the weekend, I was part of a Father's Day article about blogging dads for the St. Paul Pioneer Press, "Dads join the parenting blog ranks". Those of you who hate the term "mommy blogger" can now hate on "daddy blogger", too.

I also did an interview for writer and artist Debbie Ridpath Ohi, whose excellent work you may recognize from the Schuyler's Monster website. It focuses mostly on the writing process, so you can decide for yourself whether I'm truly a fancy pants author, or if I just got incredibly lucky. I won't tell you where the smart money is.

June 13, 2008

Sad Father's Day


I was all set to post something about Father's Day, and I might still do that. But I just found out that Tim Russert died today of an apparent heart attack.

I know we're going to hear a great deal about his contributions to the field of journalism, but the thing that I'll remember about Russert is that he wrote about fatherhood, both his life with his own dad and his relationship with his son, in a way that opened the door for other writers like myself who had something to say about being a father and a son, and what we're all trying to do in that role.

According to MSNBC:
Russert was a trustee of the Freedom Forum’s Newseum and a member of the board of directors of the Greater Washington Boys and Girls Club, and America’s Promise — Alliance for Youth.

In 1995, the National Father’s Day Committee named him “Father of the Year,” Parents magazine honored him as “Dream Dad” in 1998, and in 2001 the National Fatherhood Initiative also recognized him as Father of the Year.


Fathers have been pretty consistently marginalized in our societal narrative, but I think that is beginning to change, albeit slowly. Tim Russert was an agent of that change, although I suspect that all he really set out to do was write a love letter to his father (a personal mission I understand perfectly), and to give others a place to do the same. I truly regret the fact that I'll never have the opportunity to meet him, and to say thank you.

June 7, 2008

Reviewed in Brain, Child


A nice person sent me a scan of a review of Schuyler's Monster from the Summer 2008 issue of Brain, Child, which calls itself "the magazine for thinking mothers", although I supposed thinking fathers can read it too, as long as they don't fart or scratch or otherwise call attention to themselves.

Schuyler's Monster: A Father's Journey with His Wordless Daughter, by Robert Rummel-Hudson (St. Martin's Press, 2008). When the instructor of the Lamaze class that Rummel-Hudson attended with his pregnant wife said, "So the first thing the nurse will do is hand the new baby to you, mommies, so you can count their little fingers and toes..." Rummel-Hudson added, "And heads!" Weisenheimer moments like this pepper this making-of-a-father memoir and help leaven what could be a true tale of woe. Rummel-Hudson's daughter, Schuyler, was diagnosed at the age of three with polymicrogyria, a rare brain malformation that causes various developmental problems: the most frustrating, a lack of speech. Rummel-Hudson chronicles, with disarming frankness, the experience of parenting a child no one knows how to help. His own journey includes marital problems and fights with school administrators reluctant to work with Schuyler. His family's trials haven't extinguished Rummel-Hudson's smartass side, but they've drawn forth a tenderness that is touching and utterly familiar: "This love was daunting to me. It was the rest of my life, this love... I was Schuyler's prisoner now, and it was in that captivity that I had achieved my life's joy."

-- Elizabeth Roca
Brain, Child (Summer 2008)

June 6, 2008

Interview on Psychjourney

So if you've ever thought to yourself "Say, I like that Rob guy's voice so much, I could listen to him for HOURS," then today is your lucky day. I did an interview yesterday with Deborah Harper, the president of Psychjourney, and what was scheduled to be about a half hour interview turned into an hour and thirteen minutes. Wow!

The thing is, the interview went long because I think we got into some interesting areas, and Deborah is a fantastic interviewer who spends time with a question and follows up on points and gets very personally involved in the answers. We had the opportunity to talk earlier in the week instead of doing the actual interview (as I was sick and sounded like Puberty Frog at the time), and I think that earlier connection really made for a comfortable interview. I was much more at ease for this one than I've been before, and it definitely shows. I know an hour of me jabbering might not sound like your idea of a fun afternoon, but I think you'll like this one.

Psychjourney: Schuyler’s Monster: A Father’s Journey With His Wordless Daughter

When I went to the site this morning, I was surprised to see that in addition to the interview, Deborah had also posted the little video I made of two year-old Schuyler back in the summer of 2002, a full year before she was diagnosed with polymicrogyria. I watched it and found myself getting surprisingly weepy. It took me back to a time when we didn't know any monsters, only this funky, weird little kid who had a wheezy little donkey laugh and liked to dump water out of the bathtub.

My favorite moment is when she violently smacks me in the head and then immediately embraces me with a sort of poignant tenderness. That's my life with Schuyler in a nutshell.

June 4, 2008

Dallas Child


The fam
Originally uploaded by Citizen Rob
A local free monthly called Dallas Child, asked me a few months ago to contribute an article to their regular "daily diary" feature. I wrote up something for them and submitted it, and then promptly forgot about it like a doofus until Julie (who did NOT forget and had been watching for it this whole time) brought home some copies of the June '08 edition from her store.

You know how it is when you write something and then don't see it for a while, then you come back to it and don't actually remember writing much of it? That's how I felt when I read this again. Not in a bad sense, but rather in a "I can be sort of amusing now and again" sort of way.

That sounds like an excellent epitaph, now that I mention it. Someone jot that down.

Dallas Child is available all over the place in the Dallas/Fort Worth area, but it's a pretty safe bet that you can find it at your local bookstore. For the other 99% of you who don't live here, you can read it online:

Daddy Diaries: Robert Rummel-Hudson

Redacted


Purple fairy
Originally uploaded by Citizen Rob
I don't like deleting posts, as a rule. But after sleeping on it for a night, I think yesterday's garment-rending was an overreaction. Yes, it was uncool, reading something that one kid said about Schuyler. And as her father, I can almost guarantee I'll react strongly when I feel like she's in danger, even if it's just the danger of having her feelings hurt. Truthfully, I'll probably consistently OVERreact, because I'm a dad. That's what we do. Trust me, it beats the deadbeat alternative.

Anyway, I've taken down the post, because in retrospect, it felt like I was being overly negative and was focusing on one bad experience in a school and with teachers and classmates who have been almost entirely supportive of Schuyler. One of her teachers wrote us and said that Schuyler is an almost universally beloved kid at her school. It seems now to be a little unfair to turn a spotlight on one stumble.

But I'm keeping the photo, because you can't deny that Schuyler works the purple.

May 30, 2008

Book Launch 2.0

This is one of those things that if you're an author, it feels so truthful that while it's really funny, it also stings just a bit.



Film by author Dennis Cass. (Thanks, Karen...)

Goodbye, old friend


I've donated Beelzebug to Texans Can!, an organization that helps at-risk kids get an education. They came and picked her up today.

The whole time they were hooking her up and taking her away, I had this big old lump in my throat. Okay, I need to go take the New Hotness for a drive before I turn into an old woman for good.

May 28, 2008

She constantly changes, she never changes


... and friends
Originally uploaded by Citizen Rob
About two hours to the southwest of here, there's a town called Glen Rose. It's known around these parts for two things: the Commanche Peak nuclear power plant and Dinosaur Valley State Park, location of a large concentration of dinosaur footprints preserved in the bed of the Paluxy River. We took Schuyler to Glen Rose over the weekend. Not to see the power plant (cool though that might have been), but rather to see some of the actual footprints made by real dinosaurs.

It's hard to say why Schuyler loves big monsters so much, although I've always had the feeling that she sees them as her natural allies. As I've written before, she's never been afraid of them. Whether it's King Kong or dinosaurs or the Cloverfield monster, she's always been drawn to them as friends. Even her most recent imaginary creature, the Grass Monster, can be tamed by pouring a little bit of beverage onto the ground. When it comes to monsters, they are all Schuyler's.

As she grows older and girlier, her interests have shifted, like any little girl's might, but on her own terms as usual. I am encouraged that she doesn't want to be a princess, and if you call her one, she adamantly declares, "I'm not a princess. I'm a queen." Even at eight, she's not interested in middle management. A few weeks ago, I used a bunch of Amazon credits I'd accumulated to buy her a wooden castle that she'd wanted for a long time, and I don't know if I've ever seen her happier. She has populated it with fairies, and princesses, and cute little animals.

But there are a few dinosaurs and dragons hanging around outside the castle walls, peeking in the windows from time to time. Sometimes they come inside, not to bring mayhem, but to join in the fun. Her dinosaurs never attack anyone (although they do occasionally eat some of the animals). To Schuyler, there's nothing incongruous about their presence in her world.

The dinosaur park was a hit, I think. She gawked at the slightly ridiculous giant fiberglass dinosaurs guarding the park's entrance, and she wanted nothing more than to splash into the river and explore. We kept up as best as we could, slipping on the rocks and twisting our ankles every three or four steps. Schuyler saw the footprints, and she seemed impressed, but mostly she didn't want to look. She wanted to do. Long ago dinosaurs can't compete with being a wild kid in a fast-moving stream.

Schuyler is changing, she's leaving some of the things from her past behind her. She's becoming interested in the concrete world around her, like the "grow your own butterflies" kit we got for her recently. She checks on the caterpillars every day when she gets home from school, watching for them to begin their transformation. I watch her as she transforms herself.

But when the evenings wind down, she still brings a stuffed animal or a doll to bed with her, and since this past weekend, she's taken to looking over the edge of her loft bed, down at the new poster on her wall. It's a brachiosaurus, tall and vaguely menacing (for a salad eater), and she's captivated by it. The last time I put her to bed, she said goodnight to it, and blew it a kiss.

May 26, 2008

Memorial Day, 2008

"We are Making a New World" (1918), Paul Nash


At a Calvary near the Ancre

One ever hangs where shelled roads part.
In this war He too lost a limb,
But His disciples hide apart;
And now the Soldiers bear with Him.

Near Golgotha strolls many a priest,
And in their faces there is pride
That they were flesh-marked by the Beast
By whom the gentle Christ's denied.

The scribes on all the people shove
And brawl allegiance to the state,
But they who love the greater love
Lay down their life; they do not hate.


Wilfred Owen (1893-1918)
WWI soldier poet, describing a roadside crucifix damaged in battle

May 22, 2008

Summerfest: READ, Concert on the Patio


Schuyler's Monster
Originally uploaded by Citizen Rob
I have more information on next weekend's event in Fort Worth.

-----

Summerfest: READ, Concert on the Patio
05/31/2008
TCU Barnes & Noble Bookstore
2950 West Berry St.
Fort Worth, TX 76109
Taylor Witt, Event Coordinator
817.257.7844 | taylor.witt@tcu.edu

Join us May 31 from 12pm - 8pm for the kickoff event to our summer-long book drive benefiting the Women's Center of Tarrant County's Literacy Program. Music by Conspiracy of Thought, Waiting for Decay, and local band Fate Lions.

Guest Authors Dr. David Cross and Dr. Karyn Purvis, authors of The Connected Child, and Robert Rummel-Hudson, author of Schuyler's Monster, will discuss and sign copies of their books. We'll have prizes, face painting and a visit from Curious George!

Because everyone LOVES to read about dreams


Storm
Originally uploaded by Citizen Rob
In my dreams, Schuyler almost always does the same thing. She talks to me. She's always sitting next to me, and she's usually holding my hand. And she always says the same thing, or some variation of it. She always tells me it's going to be okay.

Last night, I had a different dream about her. In this dream, we were outside, and she was running across a field, or a park. Every so often, she turned and called out to me. "Come on, Daddy! Hurry up!" Then she kept running, and I couldn't catch up to her or call out to her.

And in front of her, the sky was dark except for lightning flashes, and a tornado was beginning to form.

I woke up before the alarm this morning from this dream, and I tried to go back to sleep, but my mind was in that "Oh, fuck THAT" mode that it goes into when it wants nothing to do with the delights that my subconscious is serving up.

I'm not one to give much credence to dreams as prophecies, although in the past I have had a few that turned out to be wickedly accurate. I still believe that when our dreams do come true, it's because our subconscious minds have picked up on clues that we might not be processing consciously just yet. I don't believe in "Watch your ass!" messages from the Great Beyond.

And I certainly don't think Schuyler is doomed to be eaten by the weather.

Things have gone so well for us for the past few months, and if anything, I suspect my subconscious mind is saying "Okay, so what's the catch?" (As if the first five or six years of Schuyler's life weren't the catch.) So I'm not going to read too much into whatever sort of metaphorical bugbear my mind is trying to call up for me.

Still, though. That wasn't much fun, and it's been bugging me all day.

May 18, 2008

Beelzebug's sweet sorrow


Beelzebug and friend
Originally uploaded by Citizen Rob
It was eight years ago almost exactly that we bought the '99 VW Beetle that we came to know as Beelzebug. It was the week before Mother's Day, meaning it was also a week before we discovered that Julie was pregnant. At the time, my friend Jim in Texas wrote to tell me what a mistake it was, buying this cheap, trendy little car instead of something good and solid and responsible that would last for years.

Well, Jim's been right about a great many things over the years, remarkably so considering that he suffers from a persistent rash known as Conservative Republicanism (I hear there's a treatment for that now), but he was wrong about Beelzebug.

That's not to say that the car never had problems. Things started going wrong with it just about as soon as the warranty ran out, things like plastic switches and little hipster accents. But the car has never experienced any serious engine problems and has gotten us from the tundra of Kalamazoo to the demilitarized zone of Detroit, then to New England for four years before finally moving me and all my crap to Austin and then finally to Plano.

It's been nine years and 122,000 miles (not easy miles, either), however, and poor Beelzebug has been making ominous sounds for some time. The air conditioning hasn't worked for a while (which makes for a delightful driving experience in Texas), and the engine tends to overheat when the car isn't moving (like in, oh, say, Dallas rush hour traffic). There's a lot of work that would need to go into repairing the car, and putting all that money into a nine year-old plastic, trendy, high-mileage car feels a little like giving a heart transplant to a 100 year-old patient. Every time poor Beelzebug makes one of its scary noises or overheats, you can almost hear it whispering its DNR request.

"No heroic measures," it seems to say. "Please just let me go..."

We've been looking at new cars for a few months now, and we had pretty much decided on half a dozen different cars before changing our minds. We had actually decided to get a Mini Cooper S, the choice originally made by Schuyler and which certainly would have felt like a worthy hipstery successor to Beelzebug. We came as close as filling out the paperwork and toying with the deposit. Seriously, we were close. It would have been yellow. Yellow. You know of my love of yellow.

But in the end, we got an excellent deal on a Mazdaspeed3, which looks like the respectable, four-door Mom & Dad hatchback Mazda3 but has a ridiculously punchy engine and will pretty much go as fast as you ever would want to go. It actually scares me, a lot. And it turns out that it was built in Hiroshima, which tweaked me a little bit, for some reason.

But no matter how much I grow to love this new car (and I have to be honest, I am digging it a lot), it'll never be quite the same as Beelzebug. We brought Schuyler home from the hospital in that car, after all. How do you top that? Goodbye, old friend.

May 16, 2008

Getting Schuyler


I never know what I'm going to write about here, and really, it could be anything. (My elderly but faithful car Beelzebug is going to get a post soon, after all.) But in general, there have been two kinds of entries that come up the most in recent months: Schuyler and Schuyler's Monster.

I make no apologies for writing about the publication experience, by the way. If I am blogging about my life and in particular my life with Schuyler, then the fact that it's a memoir, and more specifically a memoir about her, means that when people say "We want to hear more about what's going on with Schuyler!", this is a huge part of what's happening right now. So yes, in general of late, you've gotten a lot of two things. Either I'm trying to make Schuyler come to life for you, or I'm talking about the book and its media exposure.

Tonight, I'm happy to announce that I'm going to do both.

The story that Fox 26 Houston reporter Greg Groogan and special projects photographer/editor Matt Matejka put together was broadcast earlier tonight in Houston. It looks like it's going to run in some other markets, including the Dallas area, so don't be surprised if you see my big, white, doughy Robba the Hutt head on your tv soon. And possibly during the dinner hour, too, for which I can only say that I'm truly sorry. It doesn't exactly do my poor heart good either, looking at that face every morning. You at least get to look like you.

It's a different kind of story than has been done before, I'll say that right off. It's of a somewhat higher pitch emotionally, for example. But I like it, and the primary reason for that is simple.

They captured Schuyler. In the short space of the story, and really mostly in the latter half of the story, they show the Schuyler that I know and love and have been trying for all these years to show to you.

A lot of people are curious about her. They want to see how she talks and how she uses her device, and they want to know some very simple things. For the people who have come to feel emotionally invested in Schuyler (and I am learning that there are more of them than I ever imagined), they want to know most of all that she's happy.

And if there's nothing more that you take away from Greg's story, I hope that you'll see just how happy she really is. I see Schuyler's happiness and I want it for myself, I want to laugh like that every day of my life.

And the funny thing is, because of Schuyler, I usually do.

Thanks, Greg, Matt and everyone else at Fox 26.

MyFox Houston | Schuyler's Monster: Texas Dad Writes Book About Child's Disease

May 12, 2008

Things are afoot at the Purple Cow

The father of one of Schuyler's friends at school left this comment on an earlier post, and I thought since it was left as a public comment rather than an email, it would probably be okay to share here.

I think it gives a unique view of sharing a few moments in Schuyler's world, from a different perspective.


-----

eran has left a new comment on your post "Mosaic":

Tonight we celebrated my son's fifth birthday at the Purple Cow. For those of you not familiar with Plano, this is a fifties type diner in Plano that has a model train running on a track suspended from the ceiling. But the big attraction is that they serve purple milkshakes. Essentially, it's our kids' restaurant of choice.

I got there a little bit early before my wife and kids showed up and had a few minutes to have some thoughts to myself. For some reason I thought, "I wonder if we will see Rob and Schuyler here tonight." It was a fair enough assumption because we often see people who we know every time we eat there.

Well about 15 minutes after my family arrived, my daughter says "There's Schuyler!" Yup, I'm not lying, I really wondered if we would see her in there. Lauren knows Schuyler because she has been in all of Schuyler's classes at Gulledge. Lauren and I walked over and I introduced myself to Schuyler and Julie. Pretty much after that Lauren, Schuyler, and my son Scott were inseparable the rest of the time we were in the Purple Cow. They picked songs to play on the jukebox (Lauren always plays YMCA by the Village People). They eventually ditched the boring parents, sat at the bar and ordered purple and chocolate ice cream. I'm not sure who paid for that actually. Rob, please let me know if they charged you guys for my kids ice cream and I'll pay you back.

This was my first time meeting Schuyler and I have to confess I got excited the way someone does who sees a celebrity. I think because I read the book I built up a mental dialog and wanted to see it played out by the real actors. I asked her if she liked soccer and how many goals she scored this season. She raised 8 fingers. She had a very good season indeed! Lauren's been playing for two and half years constantly and she has only scored 3.

Schuyler is a riot. She has a lot of energy and she is laughing constantly. When the kids were all sitting down at the bar, I joined them. I enjoy watching Lauren hanging out with kids her own age. I see a side of her that I don't often see at home. To tell you the truth, I could understand almost everything Schuyler said to me tonight. She has learned to be expressive with her hands which does help. She had her device at Julie's table but she just wanted to hang out without it.

Julie came by and spoke with us a little bit. I asked her about the device which she showed off to me. I'm a computer programmer so my inner geek came out and I wanted to know all about it. After Julie and I talked I began think about how Schulyer could communicate in the future once she outgrew her device. I actually see her using a Blackberry sized device with a full QWERTY keyboard. This device would have a strong enough speaker so that she others could listen in a crowded room. I hope that as the AAC generation gets older the technology evolves with them.

Anyway, we had a lot of fun. Lauren kept asking me if Schuyler could come over tonight. I told her that Schuyler and Julie were eating with a friend and tonight was not a good night. However, maybe someday soon she can come over and we can have a soccer game.

Tagged

I made it into this week's Tagged!, a weekly video series about books on the Barnes and Noble website. It's hosted by Molly Pesce, who I believe used to be on that iVillage show. My mention is maybe a third of the way in. They used lots of floating head photos, which was nice.

May 11, 2008

Sometimes I get it right, and others times not so much.


Travelers
Originally uploaded by Citizen Rob
One of the things about Schuyler's condition that you might not know is that it causes her to drool at times. It's the same thing that makes her mouth unable to form consonants, a lack of sensitivity that causes her to slobber without necessarily always feeling it on her face. It could be much worse; in some kids with PMG, it actually manifests itself in partial facial paralysis.

I don't write about it very often because it's certainly not how I want her to be represented. Every now and then she gets made fun of for it, both in person and even online (including once by a "friend" of mine, although I doubt very much that she realizes that I know who it was). But all the same, it's part of life with Schuyler's monster, and it's part of who she is. No embarrassment, no shame, just a quick word (or even a discreet "wipe your mouth" gesture) and she takes care of it. But still, it's there and we deal with it.

Yesterday, she and I were waiting to pick up some food at a Chinese restaurant. We were both sitting there sort of lost in thought, and so when she started to drool, neither of us really took notice at first. When I finally saw it and took out the ever-present napkin to quickly wipe her face, I noticed a woman sitting a few seats down from us. She was watching us without even trying to hide her gaze.

Just about this time, our food was ready. I grabbed the bag, took Schuyler's hand and stepped toward the door, giving her face one last quick wipe. As I did so, we passed the woman. She looked down at Schuyler and then back at me.

"That's disgusting," she said.

I glanced down to see that Schuyler was a few steps ahead of me and couldn't hear me. I then looked at the woman and opened my mouth.

Maybe I was going to take advantage of this possible teaching moment to educate her about kids with disabilities. Or perhaps I was going to use my quick, cutting, fancy pants authorly wit to sting her with some erudite word missile that would cause her to stop and think about her lack of sensitivity. Or maybe, just maybe, I was going to offer a kind and forgiving word or two, something to make her small Grinchy heart grow three sizes that day.

"Fuck you," I said.

We walked out quickly as she stormed into the dining room, presumedly to find a boyfriend or husband to come give me a beat down.

And here's the thing. I'd love to be able to say that as I think back on that moment, I now have a handful of intelligent responses that I wish I'd used on her. But honestly? I keep coming back to "fuck you".

May 9, 2008

"Monster, Monster über alles..."

Well, it looks like Schuyler's Monster is going to be translated into German. The deal is in the works, by golly.

The first thing I did when I found out was go to one of those translation sites to see what "Schuyler's Monster" becomes in German.

Turns out, it's "Schuyler's Monster". Well now, that's not very Teutonic and menacing.

May 7, 2008

Mosaic


Schuyler's bling
Originally uploaded by Citizen Rob
It seems to me that there are a lot of little pieces of Schuyler that make up who she is, so many mosaic tiles that form her picture. Some of them are tiny, others are large and dictate so much of the shape of her portrait. And most of all, they change, frequently, so much so that sometimes I struggle to keep up.

Schuyler loves fairies now. Dragons are sort of old hat, but dinosaurs still have a place in her world, albeit not as central as before. Mermaids have also lost some of their appeal, although she still loves them and will claim to be one from time to time. And King Kong remains beloved.

Schuyler wants me to buy a Mini Cooper.

Schuyler's hair is slowly going back to its natural color (slowly because apparently "temporary" means something different to the fine folks at L'Oreal), and she hasn't requested a recharge in a while. We usually don't color it during the summer anyway, since she spends so much time in the pool, with its chlorinated water. We'll see what she wants in a few months.

When we drive past this one field full of horses and llamas in Plano, Schuyler loses her mind. Her favorite horse is the white one. And she still knows that llamas say "Om? Om? Om?"

Schuyler seems to be losing her love for Hannah Montana. I'd celebrate, except there's no telling what horribleness will follow. For girls her age, Hannah Montana is about as innocuous as it gets without involving Jesus.

Schuyler is the self-proclaimed Queen of Monkeys.

Having had the opportunity to watch Schuyler with kids her age, including her cousins last weekend, I am learning a few things. The most encouraging is that she seems to be unusually well-adjusted emotionally for her age. She never melts down, she's not terribly materialistic and she shares easily.

The most troubling thing I've realized all over again is also the hardest to say, but here it is: in a lot of ways, both developmentally and even, perhaps, cognitively, Schuyler is still seriously delayed. She doesn't use her device as much as I'd like for her to, largely because her verbal abilities are coming along to the point that we can usually understand her, as can many others who spend time with her regularly. But the fact remains that a lot of what she says goes unfathomed, and she needs to use her device much, much more in her daily life. Consider this a resolution to kick her in the ass, motivationally speaking.

Schuyler's love for pudding defies rational thought.

Schuyler likes to play monster games. Her most recent is the Grass Monster, who apparently lives in the grass (well, yeah) and will grab you like the Kraken if you fail to heed stepping stones. She first came up with it while we were waiting outside a restaurant a few weeks ago, and the fiction of the Grass Monster has grown to near epic proportions. We sort of ganged up on her cousin last weekend and convinced him that there's such a thing as the Grass Monster. I would feel guilty about that, except as father/daughter activities go, it was pretty sweet.

Schuyler had a tiny little wart on her hand. She was bothered by it at first, but then decided that it gave her witch powers and became quite upset when it went away. It recently reappeared, and she couldn't be happier.

Schuyler keeps her coins in a bank that looks like a chocolate rabbit. We call it the Money Bunny. She looks for coins all the time now, and covets the Money Bunny like Silas Marner.

Schuyler watches (and sings the theme song to) Kenny the Shark every morning before school. Well, we all do, really. And then she gets on the bus and goes to school, leaving me with my daily dose of separation anxiety mixed with horrible bus crash paranoid fantasies.

Schuyler always points out "the fuzz" when we're driving around.

Schuyler's condition keeps her from doing some sports, like baseball, but interestingly, I think she might be able to really play soccer. As I wrote before, we tried hooking her up with a local "Don't call it Angel League" angel league, but every time we went, they scrapped the soccer and just played baseball. Schuyler said she didn't want to go anymore, and that was that. In the fall, we'll try again with a different, "You can call us Angel League" angel league. I wouldn't be surprised if she could actually play mainstream soccer, and soon. I've seen some of those girls play, after all.

Schuyler likes to wear hoodies now. Her punkitude is unwavering. She still loves her Chuck Taylors but has chilled on the temporary tattoos.

Schuyler finally got to see the Cloverfield monster, thanks to the wildly inappropriate but "interesting in a cautionary tale sort of way" parenting of her father. I gave her sort of the greatest monster moments version, because I didn't think she'd care about a bunch of hipster wannabes at a party and I thought the little monsters would be too scary for her.

(I was right about the party but wrong about the little monsters, incidentally. I forgot about one scene until it was too late, and she loved it. "Wow!" she whispered, before signing "more" until I complied.)

I asked her what she thought of the actual big monster, and she said on the Big Box of Words, and I quote, "I love him. He my friend. He is biggest. He lives in New York City." (She's not one for spoiler alerts, apparently.)

Speaking of Schuyler's lack of fear, there is one exception. She is still afraid of the water. This is hard because she loves going to the pool, but she won't step away from the edge unless she positively has to. Working on this is going to be a summer project for us.

And speaking of the summer, it looks like we're going to skip all the summer day care trauma altogether this year and just rearrange our schedules so that she can stay with us. This is going to mean that she'll come to work with me from time to time. We'll see how that goes. If nothing else, it'll give me more opportunities to harass her about using her device.

Schuyler and Julie are coming with me to Chicago next November.

When we sign books, Schuyler gets bored with doing it the same way every time. At our last signing, she drew a flower for someone.

Schuyler is learning to lie, which is making for interesting times. She's also experimenting with the idea of "accidentally" leaving her homework at school. Trust me, friend. That doesn't work for long.

She and I talked about her monster recently, in a quiet moment together. She said that she doesn't mind the way things are, because her AAC device makes her different, and she likes that. "I love my voice," she said, indicating her Big Box of Words. She seemed genuinely puzzled that I would even ask.

Sometimes, she says, Schuyler is an eagle.

Sometimes she is Ice Girl.

Sometimes she breaks my heart.

Mostly, she's my "why".

Ten words = free stuff?


My friend Karen Harrington, author of Janeology, is having a fun contest on her site. To celebrate her recent good review from the New Mystery Reader, she's giving away signed copies of her book. All you have to do is write a ten word story about a dysfunctional family. (One of the core elements of her book is a pretty extreme level of family dysfunction, I think it's safe to say.) Ten words, no more and no less.

Win free copies of JANEOLOGY

For my own entry, I came up with this, about a 100% totally fictional family with whom I am not one bit associated and who should not call later to complain, because it's just a joke and a little writing exercise, and, uh, yeah.

"If they'd known about the book, they might have behaved."

Incidentally, I don't get to read a lot of fiction, certainly not as much as I'd like to, but Karen's book was a lot of fun. I liked it so much, I reviewed it on Amazon. I'm swell that way.

May 5, 2008

Single Mom, um, Interviewing

I was interviewed by my friend and Single Mom Seeking author Rachel Sarah last week. The title of the interview addresses what might be your first question:

What’s a married dad doing on Single Mom Seeking? Welcome Robert Rummel-Hudson

I actually got to meet Rachel when I was in New York, and one of my biggest regrets is that I didn't get to talk to her longer. You think that book release parties and signing events are going to be a great opportunity to get to know people, but the opposite is actually true.

Her site is one of those that grows out of a book and takes on a vibrant life of its own, and I am thrilled that she wanted me to be a part of it.

May 2, 2008

Hello there, Houston


Schuyler & Jasper
Originally uploaded by Citizen Rob
UPDATE: I just heard from the reporter. Apparently his bosses like the story so much that they are going to hold it for a bigger ratings night and do some local promotion for it. So look for this to run on May 12th.

--------

If you live in Houston, you can catch Greg Groogan's story on Schuyler's Monster and the Rummel-Hudsons tonight at 9pm Central on Fox 26.

For those of you not in Houston, you can watch a live video stream. (It shows traffic the rest of the time, which I've found myself strangely mesmerized by all morning.) I'll post a link to the story at the end of this entry as soon as it goes up, probably tomorrow.

I think this is going to be a good story. I got a little sneak preview of the script in progress the other day, and it's a little more dramatic and personal than the ones we've participated in before, which is sort of fun. It's nice to change thing up now and then.

While I was watching the live feed this morning, I just happened to catch the "what's on tonight's broadcast" guy:

"Tonight you're going to meet a father whose successful struggle with his daughter's autism has led to a novel."

Well, okay. Close enough. At least he didn't say she had monkeypox.

April 28, 2008

Deus ex machina


The Management
Originally uploaded by Citizen Rob
When Schuyler's Monster was published, I think the thing that surprised my friends the most, even more than my confessed infidelity (because let's face it, who was really surprised?), was the fact that I wrote so much about God. To be honest, I was a little surprised myself.

"For now, she largely remains an enigma, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."

After the book came out, and especially after I began talking about faith issues on tour and in book clubs, and now on television, a lot of people have been writing to me about it. That's fair enough, and it's a dialogue I welcome. If I didn't, I wouldn't have written about it. But it's been hard to discuss because my own feelings are in flux. I think that's the way faith is for most people. Does anyone ever truly arrive at an endpoint in their philosophy? I'm not sure I trust anyone who is absolutely sure of very much in this world.

It didn't take me long as a child to decide that I wasn't a Christian and never would be. Sorry, Jesus. I'm just not that into you. But my feelings about God have been more complicated, even before Schuyler was born. It's probably no secret that my feelings have become much more convoluted since she was diagnosed. Well, of course they have.

But the thing is, I've never given up on the idea of God, not completely. My God might not be your God, not if you buy into the whole "angry invisible man in the sky" idea. I find the idea of moral judgment from on high to be so subjective as to be meaningless. When I refer to "this grand rough world" as I sometimes do (and no one has ever identified the source of that phrase), I mean a place that is wondrous and terrible, a universe of unspeakable beauty and unblinking cruelty. It can be difficult to place God in the context of such a place.

And yet, sometimes I try. Sometimes I want an answer from God, an answer to why he sometimes breaks children. It seems like a fair question to me, and yet the God that I seem to have constructed in my head (like I think we all do, which is why our God tends to hate all the same people that we do) doesn't have the answers. Perhaps my God is less of a Creator and more of a Manager. Maybe he built the store, but now he works behind the counter, and what his customers do is beyond his control and maybe even his understanding.

I find Manager God easier to accept than Control Freak God, because then we're back to the idea that he intentionally breaks little children, allows vile things to happen to them, makes a mockery of their innocence. And that's hard. I hear a lot of variations on "God works in mysterious ways", about how Schuyler and all the broken children in the world are here to teach us things, or how their brokenness has some greater meaning. And I just can't accept that, I can't make peace with the idea that they exist and suffer in order to illuminate the rest of us.

And yet.

There are things about myself that I accept as a sort of hardwired reality. I can resist them, and I do, but they are there and they are me. I'm always going to have a temper, and poor impulse control, and most of all issues with authority. I'm not actually sure I'd want to change all that. I'm never going to be the poster boy for monogamy and I doubt very seriously if I'll ever get a job as a responsible financial planner. I can always try to do better, but the thing is, it'll always be something that I must try to improve. I'm flawed, like the rest of you but probably more than most. Perhaps it is to my advantage that my worser nature is in a book now; people who can't deal with my flaws can't say they weren't warned.

And yet, Schuyler came to me. To me, and to Julie, who shares most of my flaws. And I'm going to flatter myself to think that we've done pretty well for her. We made lots of mistakes, and we continue to do so, and our flaws haven't magically disappeared. But we're managing to raise a pretty amazing little girl, one who is as broken as we are and yet perfect in her own way.

I don't know how God fits into that. I remember that very few of the people in the Bible or throughout history who were doing God's work were very strong believers. Blind faith and religious fealty don't necessarily seem to lead to great deeds. They doubted, and they sinned, and if a doubter and a sinner can labor for God while simultaneously calling him on his bullshit every so often, then perhaps I've still got some work to do. I can shake my fists at the sky and say "oh, that's fucked up!" when such a gesture is appropriate, and then get back to work.

God and I have some things to work out. But negotiations haven't broken down just yet.

Chapter Seven

First of all, can I get a woo? Why, thank you.

One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:

Raising Autistic Children Making Marriages Difficult

His story on Schuyler should run at the end of the week.

April 25, 2008

Pimpin', yo.

Author appearance
Saturday, April 26, 2008
2:00 pm
Barnes & Noble - Lewisville
Vista Ridge Village
2325 South Stemmons Freeway Suite 401
Lewisville, TX 75067
972-315-7966

I'll be there with Schuyler. This is the last regular appearance that I've got on my schedule (there's one in Fort Worth next month, but I'm not exactly sure how it's going to work), so if you want to meet Schuyler, abuse me in person or kill us and eat us (not recommended), this might be your last chance for a while.

I'm working on an entry on Faith, by the way. Hopefully I'll have it done today, just in case someone wants to issue a fatwa before the book signing. I share because I care.

April 24, 2008

When the visigoths get to the gate, I hope they have flag pins

Every now and then, someone will email me and ask if I ever intend to talk about politics again. This blog has sort of turned into the Rob & Schuyler Show, and that is in part intentional, especially for now while the book is new and people are coming here as a result.

But the truth is that I just haven't had much to say about politics. I've become so disheartened by the whole process that honestly, I don't have much to contribute. I've become the saddest of Independents, the kind who has given up on the two parties as Evil (R) and Incompetent (D). I'll never believe in the Republicans because they stand for everything I deem to be foul, but the Democrats? I may actually despise them a little more, since they dress themselves in my progressive values and then achieve almost nothing of worth at all. Both parties have achieved a level of consistency. I can always count on the Republicans to do the wrong thing, and I know the Democrats will follow up by trying half-heartedly to do the right thing, maybe, if the polls say they should, but ultimately fuck it up catastrophically.

Anyway, I've placed a little Obama widget on the sidebar there since unlike the Nixonian Hillary or the Magoo-like McCain, I can at least believe in what he says he stands for, and his much-maligned "lack of experience" means that he hasn't had time to really don the Cloak of Disappointment yet. But in my heart of hearts, I suspect he will. (Bill Clinton did, after all. Good lord, he needs one good and true friend, someone who's not afraid to lean over and say, "You really need to shut the fuck up now.")

Anyway, since the primary race has officially and flatulently stunk up just about every corner of the media and trying to ignore it is becoming impossible, I thought I'd let The Onion speak for me.


Poll: Bullshit Is Most Important Issue For 2008 Voters

Good Morning Texas Redux

Some of you were having trouble seeing the video from the WFAA site. Also, it cut off at the end before you got to see Julie's Stepford Wife smile and Schuyler mentally compiling her list of places she would rather be at that moment. So here's another shot at it. (Sorry the quality is sort of weird. I'll keep working on it.)

April 23, 2008

Good Morning Texas


Good Morning Texas
Originally uploaded by Citizen Rob
Well, that was fast. My interview on Good Morning Texas is already online, so go check it out. I'm sorry to say, this clip cuts off before you get to see Schuyler and Julie sitting in the studio, so sadly it's just me and my unusually large meaty head.

I thought it went very well. It's hard in these very short segments to really get into very much of depth, but Paige McCoy Smith managed to cover an astonishing amount in a brief period. She asked me about my faith, which was a little unexpected (although she did give me a heads up before we started) but something that I was actually happy to talk about. It's funny, but the interviews for which I am the most prepared in terms of knowing questions in advance and what my answers will be, those tend to be my least favorite, and the ones that I think are the least interesting. Discussing my feelings about God on live television isn't something I would have ever expected to actually enjoy doing, but I'm glad she asked it. My answer was pretty much on the fly, and yet I'm entirely happy with it.

Another thing that Paige brought home to me was just how much I enjoy doing interviews with journalists who have actually read the book. That seems like an obvious point, but you'd be surprised. And it's always obvious, too. Not so much that they know facts that are pertinent, although that's part of it. (My favorite from a past interview was, about Schuyler's static brain condition, "Good luck with her continued improvement.") It's more that once you've read a book, you know a great deal about the author's personality and beliefs and such than you'll ever get from a press release or a book flap description. Paige McCoy Smith and KERA's Krys Boyd and Fox's Greg Groogan were responsible for interviews that I've enjoyed immensely, for just that reason.

Schuyler had a great time, of course, and charmed the pants off of everyone, as usual. The studio at WFAA is wide open, with glass walls everywhere, even the green room, so while you're waiting, you can see much of what's going on. She spent the better part of the morning having her mind completely blown, and finished off the experience by eating the strawberry smoothie prepared in a segment by "celebrity chef Jon Ashton". Julie finished up the morning by slobbering all over "celebrity chef Jon Ashton". It's sad, really, watching a woman of her advanced years lose her dignity like that. Really unfortunate.

Okay, so I really shouldn't tell this story, because past experience suggests that the chances of it getting back to the parties involved are somewhere near 100%. But it's been a while since I've started any trouble online (at least here; I've been poking a bees' nest on a parenting site on the topic of spanking, a metaphor that only works if you imagine really dumb bees), so I think I'm due.

While we were waiting for the show to begin, we were sitting in a room watching "Good Morning America" with two fashion models who were going to be on a segment before mine. GMA was interviewing Marlee Matlin about her appearance on "Dancing with the Stars", and she was signing away as she talked.

One of the models turned to the other and said, with absolute sincerity, "Do you think she's deaf?"

April 21, 2008

Take Your Daughter to Work Week

This is a busy week for us, in the best possible way. As I mentioned before, this Wednesday I'll be on a Dallas-area program called Good Morning Texas, on a segment called The Not So Perfect Parent. Julie and Schuyler will be in the green room, and may very well make an appearance on the show. Well, I certainly hope they do, because let's face it, who would YOU rather watch? Lovely Julie and enchanting Schuyler, the self-described "Queen of the Monkeys"? Or, you know, fat old Robba the Hutt? The show comes on during the breakfast hour, after all. No need upsetting people while they're eating.

The other thing taking place this week is a book signing at the Barnes & Noble in Lewisville, Texas. If you live in the area and would like to meet me (or really, more to the point, if you'd like to meet Schuyler), we'll be there at 2:00pm. It's going to be a special event (as in, totally unpredictable and possibly chaos-in-pink-Chuck-Taylors) because Julie has to work, so it will just be Schuyler and me. This means that if I do a reading, she'll be on her own. Anyone who has seen her at these events knows just how much fun that might be. Come to the signing and watch the last shreds of parental authority fly out of my shaking hands!

A bonus for people in attendance: Schuyler loves to sign books, and she's become very sophisticated in her approach. We attended a very cool book club last week, and it should come as no surprise that her signature was pretty clearly coveted more than mine. Which is as it should be.

When Schuyler signs a book, her name stretches across the page, the letters blockish and angular but very meticulously written out. She ends her autograph with a period, every time, and occasionally she'll sneak down and put a period at the end of mine, too. If she gets to the edge of the page before she's done, she simply shifts into vertical mode for the rest of her name. Sometimes she'll pick a different page to sign, and often she quickly signs in the spot that I usually use, just to be a turd. She even laughs when she does it. Every time she signs her name, it's different, and not just slightly.

I'm always thrilled to sign books for stores, and I've been happily signing a lot of books for Prentke-Romich, makers of the Big Box of Words. But we decided at the very beginning of all this book business that Schuyler would only sign books for individuals, either in person or sent to us or whatever. I like the idea of Schuyler's autograph rendering someone's book into a totally unique thing, different from any other in the world.

Just like Schuyler herself.

April 15, 2008

I have macho cred

Shut up, I do!

(By the way, the macho tv watching behavior I engage in is actually those police chase video shows. Seriously, if I'm channel surfing and I come across one of those shows, I am powerless to NOT watch it. Dash cam or helicopter POV, it doesn't matter. If loving the spectacle of drug-crazed teenagers driving stolen cars into oncoming traffic or over those spike strips that make their tires EXPLODE is wrong, I don't want to be right.)

Rockabye


Promo Proofs
Originally uploaded by girlsgonechild
One of the things that still catches me off guard is the fact that anyone gives a damn about what I think concerning books. Even now, in this age of consumer-driven content and Amazon reader reviews, the idea that my own credentials as a writer might give my opinion some added weight or validity doesn't naturally occur to me. When Karen Harrington, author of the very excellent Janeology made mention in an email of the review she had received "from a big-time memoirist", it actually took me a few seconds to realize that she was talking about me.

Nevertheless, when a book really does it for me, I try to put something together to express my feelings of gratitude to the author. And it really is gratitude. A good book is no small thing, nor (more to the point) is a bad one. When you watch a movie that you think is going to be good and it turns out to be a stinker, that's a good two hours of your life that you've tossed away. But when it's a book that leads you astray, the hours and even days that you've invested in it that you'll never get back. You'll be on your death bed one day, muttering to yourself, "If only I hadn't spent so much time reading all that fucking L. Ron Hubbard." You learn to cherish the good ones.

When I started reading Rebecca Woolf's Rockabye: From Wild to Child, I'd followed the marketing closely enough to know what I was supposed to be getting. I settled in to read another memoir of a party girl transitioning to parenthood while struggling to remain hip and cool. Which was certainly fine. Never having been actually cool myself, that transition was fairly straightforward for me, so I occasionally like to vicariously gank some cool from others.

By the time I finished Rockabye, I was looking at a different book altogether.

Simply put, this is a book about the tranformational power of a parent's love, the kind of love that can envelope you and warm you, but also consume and burn you. In bringing her son Archer into the world, Woolf begins to discover her own true heart and her own capacity for love and growth. Yes, part of that evolution involves leaving behind some of the party-all-the-time aspects of her youth, but the more important parts of herself, her independence and her insistence on doing things her own way, relying on her instincts, these are the pieces that she clings to.

I want to make something clear. Rebecca Woolf is a fantastic writer. She's open and honest, unblinkingly so at times, and yet her command of language and the near poetry of her wordplay feels like music. It's been a long time since I've gotten lost in language like that, just floating in someone's wordplay.

There are some striking parallels to Woolf's story and mine (or rather, to Archer's and Schuyler's), but I don't want to make too much of them. I would recommend her book to anyone who liked mine, if only because of some of those parallels, but honestly, I'd rather recommend Rockabye for no other reason than I found it to be a viscerally satisfying read. At its best, it feels like a gift, and it's at its best a lot.

I think you'll like this book. I'm pretty sure most of you will. Rebecca Woolf's the writer that I wish I was, and that's the truth.

Thank you for choosing me to mother you. Thank you for sneaking in through my window and saying "Boo! Here I am!" Thank you for stirring and purring and screaming and crying and laughing and talking and standing and jumping. You are my exclamation point in a world of dot-dot-dots. You are my star in a sky muted by city lights. You are my sun. My son. My sun.

Rebecca Woolf, "Rockabye: From Wild to Child"

April 10, 2008

Things that give me pause in a busy world


February 2000
Originally uploaded by Citizen Rob
I just wanted to quickly post and say that I'm alive and well, just a little busy and getting caught up. We received a visit from Fox 26 Houston reporter Greg Groogan, who spent some time with Schuyler and Julie and myself, both here at the apartment and at Schuyler's school. I'm told that his story will probably run in early May and may be picked up by affiliates in different parts of the country. In your town, too? Well, perhaps!

It felt like a really good interview; Greg's got a lot of experience with special needs kids, both personally and professionally, and it absolutely showed. I've talked to a variety of reporters since the book came out, and some of them were exceptionally sensitive and good, but with Greg, it was almost disconcerting, being interviewed by someone who really gets it. I'm curious as to how it's going to turn out; I suspect it's going to be outstanding. When we were doing the actual interview, I almost got a little weepy a few times. Not he-manly at all, I know. I suspect Greg was slipping estrogen into my water when I wasn't looking.

There's so much I want to talk about in more depth, such as the fact that I did a little book-for-movie exchange with Dan Habib, the father and filmmaker behind the brilliant documentary Including Samuel. I'll have much more to say about this, but for now, let me simply say that if you have any feelings or questions about inclusion and mainstreaming for special needs kids, you really do owe it to yourself to see his film. We're not in 100% lockstep agreement (you can probably imagine how I feel about the page in the film notes called "Words Matter", about person-first language), but we come to the same conclusions about the benefits of inclusion for these kids. Not just for my kids, but for yours, too. See this film if you get the opportunity, even if you find yourself opposed to inclusion education. Or especially if you're opposed to it, really.

In my book, I mention the polymicrogyria online support groups that I follow. I never contribute to them, probably out of something akin to misplaced guilt for Schuyler's comparatively good fortune, but I read them religiously. In Schuyler's Monster, I wrote about the heartbreak when a parent comes on the forum and reports the death of their child. There was one a few days ago; I showed it to Greg when he was here, and I think it made a powerful impression on him. Well, of course it did. If you're not touched by reading a parent's words as they report the death of their three year-old as a result of repeated, nasty seizures, there's something dead in your chest. You might want to go have that checked by a physician.

How does a parent watch their child die? How do they make peace with that, with their seemingly cruel or indifferent God and a world with such monsters in it? How do you bury your own son or daughter? People have been telling us how brave and how strong we are, but that's a world of brave and strong that I've never lived in, and do not believe I am capable of. I don't breathe the air on that planet. People have said that God never gives you anything that you can't handle, and I'm here to tell you that's the worst kind of bullshit-on-a-stick there is.

Compared to the Godzilla-like monsters that snatch up little babies and consume them before their heartbroken parents' eyes, Schuyler's is the fucking Cookie Monster. And that's good enough for me, thank you very much.

April 5, 2008

The John McMullen Show

I survived my first live radio experience with a minimum of anxiety this week. It was a longer interview than I've done before, and a little light on laughs, but he asked some questions that were different from past interviews, so that shook things up a little. Overall, I think the interview went pretty well.

Sadly, there were some weird technical issues that made the actual broadcast almost unlistenable. For some reason, the levels on my input kept getting louder and softer, over and over, as if I were walking around waving the phone like a maniac. In fact, I was sitting at my desk at work, with a minimum of maniacal gesturing, so I can only assume that there was something about my phone that was sabotaging the call. Stupid phone.

I did manage to get a clean copy from a nice person out there, and I went into iMovie and futzed around with the levels to try to minimize some of the weirdness. It still sounds a little strange, but I think it's at least listenable now.

Anyway, here it is.

April 3, 2008

Fancy pants LIVE


A hundred copies
Originally uploaded by Citizen Rob
A few booky things for you this morning.

I'll be venturing into the terrifying world of live radio tomorrow, on The John McMullen Show in Palm Springs, California. (AM 970, 1140, 1250) If you live elsewhere but would still like to listen in and see if I'm going to drop an F bomb or throw up on the air, go to the K-News Radio 970 page for streaming audio. The show is on from 10am to noon, Pacific time. (Crap, now I have to do math.)

Next week, a reporter from a station in Houston is coming up to do a story on us. I'll keep you posted.

I've also got a live television appearance coming up on April 23, on a local Dallas area show, Good Morning Texas. The segment is called The Not So Perfect Parent. Schuyler might just make an appearance, so catch it if you can. If Schuyler has one predictable quality, it is her unpredictability. She loves chaos. I have no idea where she gets that.

April 1, 2008

Is Schuyler a political pundit or a techie futurist?


You talk too much.
Originally uploaded by Citizen Rob
This question was on Schuyler's home work. I'm still trying to decide what to make of her answer.

-----

New Things

The White House is where the U.S. president lives. Life in this building has changed over time. The White House got its first telephone in 1879. It got electric lights in 1891. An indoor swimming pool was added in 1942. The White House got its first fire alarm in 1965. After that came other new inventions such as computers and cell phone.

1. Make a prediction. What do you think the White House will get next?


Her answer?

"A brain hat."

-----

I asked her about the brain hat. She says it looks like a helmet, hers is yellow and mine is green. "Brain hat help you work."

Where did she get the idea that the current White House occupant needs a brain hat? I guess she's paying attention after all.