March 27, 2008

Eighteen years ago

(Quick book biz: I made a best-seller list, here in Dallas. Not the end-all hootenanny of hootenannies, I realize, but baby steps, I tell you. More stuff coming, too, so stay tuned. My plan to eventually install Schuyler as the Cyborg Queen of America is proceeding on schedule. Mwuh-ha-ha-ha...)




This week marked eighteen years since my father died. It wasn't exactly a sad anniversary; eighteen years is a long time, after all. It won't be long before I will have lived without him for longer than he was here, and not that much longer before I find myself having lived longer than he did. So I've had some time to come to terms with not just his death, but his life, and mine as well.

If you've read the book, you know better than others how many of my father's most egregious faults have become my own. I'm aware of them, and I've fallen prey to some but not all of them. I'm a better husband than my dad was, but not always by much (and fans of Chapter Seven know what I'm talking about), I'm a better diabetic by far, and while I have my father's temper, I watch it constantly and at the very least vent it in ways that don't hurt anyone. I'd like to do better with that temper, but I remember just how afraid I always was of my dad when I was Schuyler's age, and I won't allow her to feel that same fear, ever.

It's one of the reasons I refuse to spank/beat/whatever-word-you-like my kid, and to be honest, it's the same reason I don't think anyone else should, either. Who has the temperament and self-control to be trusted never to cross the line between discipline and abuse? You? Are you sure about that? I'd want to be pretty sure myself, but that's just me.

(Sorry, tangent. Settling down now.)

I'm working on a new project, and what started off as a book about fatherhood is turning into something more personal, sort of a fatherhood memoir, from my perspective as a father but also as a son. There are still other stories I am including, such as Paul and Gage Wayment, and Joseph and Rolf Mengele. But it's my own perspective as the father of a broken but extraordinary child and the son of an abusive but complex father that I find myself wanting, or perhaps needing, to explore.

I'm forty years old, and I'm working on a second memoir. How narcissistic is that?

Will anyone want to read it? Well, obviously I hope so. We'll see. I wasn't sure anyone would want to read about seven years in the life of a mute child, either. There are plenty of inspirational warm fuzzy fatherhood books out there. I don't know that the world needs another Tim Russert book, and if it does, I think Tim's probably got that one covered.

Eighteen years ago, standing at my father's graveside, I thought that perhaps I hated him, and that he certainly hated me. Almost two decades later, I know that I don't, and probably never did, not for long, anyway. As to how he felt about me, I find myself not much closer to that answer. He took that one to the grave with him. Which is perhaps just as well.

March 24, 2008

Mockingbird


Mockingbird
Originally uploaded by Citizen Rob
A few quick book things to report. First of all, the book trailer I put together last year is being featured on the Barnes & Noble site, thanks to the tenacious work of the very cool Monica Katz at St. Martin's. I'm really happy with the continued support from St. Martin's. Also, while I am as "Fight the Man", pro-independent bookstore as anyone, I'll never say a word against Barnes & Noble, who have gotten behind the book in a big way.

Back in the spring of 2003, Jim Shelton at the New Haven Register in Connecticut did a feature about local bloggers, and was kind enough to write about me then. It was fun at the time, although the story of us changed rather dramatically a few months later when Schuyler was diagnosed with polymicrogyria and our world turned upside down. Last week, Jim called me up and we talked for a bit, and the result is a new story in the New Haven Register. It was a nicely done story, and it felt a little like a homecoming for me. I miss New Haven like mad.

Last night marked the end of Spring Break for Schuyler and me. Julie had to work most of the time, so we didn't go crazy this past week, but instead just sort of enjoyed the time together. We hung out, flew kites, watched a lot of Kim Possible (one of the few shows that Schuyler watches that i can stomach; it is the anti-Hannah Montana for me), and even went to a dog parade. It was a nice week.

After Schuyler went to bed last night, Julie and I watched To Kill a Mockingbird again. I can't tell you how many times I've seen it, or how many times I've read the book, for that matter. They seem like two parts of one whole experience, so perfectly matched as they are, in a way that is rare for books and their film adaptations.

I've loved that book most of my life, ever since the first time I read it back when I was probably about the same age as Jem Finch. And yet, in looking back on the years, it seems strange that I would have ever known that book or the film without associating them with Schuyler. I watch the movie now and I am aware of the relationship between the father and the daughter, the wild and different little girl who is curious about a world that is meaner than she is but which is also full of mysteries to be explored.

I always identified with the kid characters growing up, like just about anyone else who read it when they were young, but now I find myself experiencing the story from the perspective of the father. Atticus tells Scout that you can never truly understand someone until you see the world from their perspective, to climb in their skin and walk around in it for a little while. I think I finally understand.

It's an imperfect parallel, of course. Schuyler is herself equal parts Scout Finch and Boo Radley, and I am no Atticus Finch, although God knows I do try.

March 21, 2008

Bok bok

Rather than make my usual, snotty and perhaps predictable "Zombie Jesus" jokes about Easter, I thought I'd remind everyone of the most persistent Easter memory most of us (or a certain age) still retain.






Well, okay, perhaps not the ONLY memory...

March 16, 2008

A Thousand Miles in a Ford Focus

I got back from the book tour a few days ago, and I've been getting caught up on work stuff, and Life stuff, for a few days. (The one thing I haven't gotten caught up on is email, so if you wrote to me within the past three weeks or so and are now thinking "Wow, what a dick!", I am going to answer your mail. I just don't want to respond with some pat little "Hey, thanks for writing, buddy. Buy my book!" Because then you'd be completely justified in thinking, "Wow, what a dick!" I don't mind you thinking that, I'd just like to earn it like in the old days.)

The book tour was a great experience in a lot of ways. There were a few with a big turnout and also a few with maybe a dozen or so people by the end, but I never had an event where the dreaded "what if you had a book signing and no one showed up?" occurred. I got to see writers I dig, like Gwen and Ariel, and a lot of old friends, and I got to meet people who touched me profoundly.

I've read a lot of critiques of the book tour as a marketing tool, and strictly speaking, I agree with much of what I've read. When you factor in travel expenses and hotels and all that, the sales you make on tour aren't going to even cover the cost of the tour itself. Perhaps the real value is in generating buzz and word of mouth, but still.

However, I wouldn't trade the experience of the book tour for anything. It's one thing to write about Schuyler's experiences and my own, and even to receive emails from the people who have been moved by those stories. It's quite another thing to meet people, however. I heard stories from parents who are in the place that we were with Schuyler a few years ago, a place with more questions than answers, and I cried with moms who were just happy to tell their story to someone. Never mind the fact that I was an author in my fancy pants. They were telling their story to someone who'd been there before them, and that was enough. What they didn't realize, perhaps, was how much I got from the experience.

So now it's over, and after driving over a thousand miles around Texas and feeling both very fancy and authorial one minute and then not one bit famous and fabulous at all the next, I'm home. Back to work, and back to play with Schuyler.

Yesterday I took Schuyler to see Horton Hears a Who, and when we got home, she took out her Big Box of Words. Together, we very carefully found all the words she needed (and spelled out a few not on the device), so that when Julie got home from work, Schuyler could tell her something very important she'd learned.

"A person's a person, no matter how small."

Today, Schuyler begins playing soccer, at a local program for special needs children. I took her to a sports supply place the other day and got her outfitted. We're taking Schuyler to play soccer today, and if you're a parent and that sounds like the most boring, every day, every kid sort of thing to write about, I agree.

It sure took a lot of work on Schuyler's part to get there, though.

March 10, 2008

Jumping Monkeys

I've been looking forward to this for a while, because it's a program I've started listening to since I was a guest a few weeks ago, and I've really come to like it. I recorded a guest spot on a podcast called Jumping Monkeys, hosted by Megan Morrone and Leo Laporte, and they are running my program now. Go check it out, it's a lot of fun. It was easily the most fun I've had in an interview. Also, when you're done, check out their very funny interview with blogger Dad Gone Mad.

There's a funny story behind my Jumping Monkeys interview, by the way. When my publicist set this up, we worked out the date and time and I was given a phone number to call. When the time came and I sat down in a quiet office and called, it rang a few times and then suddenly I was hearing voices. It was the hosts, talking about no call lists.

I figured that like many stations, I was on hold and listening to a pre-recorded program instead of hold music. I'd certainly rather listen to Jumping Monkeys than, you know, Chariots of Fire on the pan flute, so I just sat back and listened while I waited for the program producer to pick up.

And that's when I heard it.

"Hey, speaking of calls, I hear Robert on the line!"

Oh, I'm live. I see!

Turns out, I had called directly into the program, and whether it was God or Fate or my Imaginary Friend in the Sky, some powerful force kept me from talking to myself or belching or practicing my F-bombs during that minute or so that I thought I was on hold. Aside from a slightly surprised "why hello there!" tone to my voice, I don't think you can even tell.

I tell you, I'm a cautionary tale just waiting to happen.

March 9, 2008

Schuyler in the Dallas Morning News

"New book chronicles Plano girl's battle with disability that's left her unable to speak" - Dallas Morning News (March 8, 2008). Annette Nevins reporting.

---

With apologies to everyone else who has written about Schuyler over the past few weeks and months, I have to say that this story, which apparently ran in yesterday's Dallas Morning News, is my favorite so far, if for no other reason than the video. We pretty much disrupted class for the better part of a morning to get this, so I'm glad it worked out. (I hadn't disrupted a class and gotten away with it in a long time, so it was nostalgic. And I didn't even have to make any fake fart noises to do it, either.)

Today is my signing in Austin, at the store where I once toiled for The Man. Funny how things turn out sometimes.

March 7, 2008

"Say a little prayer for Mister Fancy Pants..."

First things first. Last week, I was interviewed by Jennifer Stayton at KUT Radio, the NPR station in Austin. Her story, "Taming a Hidden Monster", ran during Friday's Morning Edition, I believe.

I'll warn you, it's a little disconcerting. Since there's no introductory material included with the clip, it just goes right into it. Also, I'm stammering like a head injury patient, for some reason. (I recorded the interview at KERA in Dallas, so while it was live, I wasn't actually looking at the reporter, but instead was facing a big, intimidating, floofy microphone. For some reason, that made me nervous.) Other than that, I like how it turned out, especially the reading at the end. She actually got a little choked up when I read it, but that part didn't make it into the story, which I think is a pity. They also edited out the section of the reading where I got to drop a big fat F-bomb. I guess they enjoy their FCC license. Big babies.

So I'm sitting here in my hotel room in Houston, living a life of fancy pantsedness that you can probably only dream of. The glamor of a book tour is hard to describe in mere words; the empty Popeye's bag in the trash can will have to tell the tale for me. I went down to the hotel bar, but I'm staying near the airport and the collection of sad, half-buzzed businessmen didn't hold so much appeal for me as I thought it might. I reluctantly gave up the promise of that glitzy scene and came back up to my room to post for you fine people instead, because as you know, my biggest flaw? I care TOO MUCH.

I do have a traveling companion, however. Jasper 1.0 joined me on this trip, sitting smartly in the passenger seat the whole way down. Now that I've gotten accustomed to his one eye and his rough-chewed edges, I find myself becoming weirdly protective of him and his reputation. Perhaps I need to find some human friends tomorrow when I get to Austin.

I made an important decision about the Jaspers. When I get back to Plano, I'm going to come clean with Schuyler. I might even do it tomorrow morning via video conferencing, which Julie and I made work tonight, thanks to the magic of iChat. That would blow Schuyler's little mind. Julie already began explaining what happened to her earlier this evening, and she said that Schuyler seemed unconcerned. I'll show her Old Jasper and explain that he's delicate now and is going to retire up on a shelf of honor, so New Jasper is going to step in and take on his duties. Sort of like Joe and Steve on Blue's Clues, if Steve Burns had left the show due to a disfiguring accident.

Don't ask me why I feel so guilty about trying to deceive Schuyler regarding the Jaspers. I think it bothers me because I seem to have gotten away with it. I think I would feel better about it if she'd called me on my bullshit.

March 6, 2008

Jasper 2.0


Either I got away with it, or she doesn't particularly care one way or the other. Welcome to the fam, Jasper the Second.

March 5, 2008

Le Roi est mort. Vive le Roi.


The Jaspers
Originally uploaded by Citizen Rob
It was perhaps tragically fitting that my last post included a photo of Schuyler with her beloved friend Jasper. If you've read the book, or if you've been around for a while, you know that Jasper is Schuyler's oldest inanimate friend.

He was originally purchased while Julie was pregnant so that he could ride around in my car with me and let me see if I could ever get accustomed to the name "Jasper" in case we had a boy. I couldn't, of course (could you?), but the name stuck, and after a period of rejection by Baby Schuyler, he eventually became one of her most treasured friends. She even insisted on a girlfriend for him. (They have a baby bear, too.)

Julie and Schuyler fell asleep on the big floofy chair in the living room tonight, and at some point, Jasper slipped from Schuyler's grasp and fell to the floor, met by the gaping, slobbery maw of Max, Schuyler's very very very bad little dog. The rest you can probably figure out.

I looked over and saw the tragedy unfolding before it could get very far, and I managed to snatch poor Jasper up and take him to the other room before Schuyler could notice. The damage wasn't horrible, but it was bad enough. Ears chewed, one foot stripped of its fur, and most horribly, an eye completely missing. Jasper had been disfigured to an extent that couldn't be fixed.

Well, this is one of those parenting moments where they don't exactly tell you what you're supposed to do, now isn't it? What's the right thing to do here? Let Schuyler face the ugly truth and see what her nasty little hellhound had done to her best friend? Or run to the mall and pray that the Gap (Jasper's port of origin) would carry another that looked like him and try to slip a new Jasper 2.0 past Schuyler? In general, I am all about letting Schuyler see the world in all its grandness and all its pain at the same time, but tonight, I just couldn't do it. Ten minutes to drive to the mall, five minutes in and out of the store, and a sly switcheroo after she had crawled into bed in which she accepted the doppelgänger under darkened conditions, and the deed was done.

We'll see if it worked in the morning. These little Gap bears all seem to be a little different (lovingly hand-crafted by Chinese slave labor, no doubt), and Jasper Mark II looks a little different from his now one-eyed predecessor. Julie and I aren't in agreement on this, by the way. She feels like Schuyler is tough and could deal with the truth. I guess I agree, but then, I feel like she gets to handle the tough truths a lot. I will say that if Schuyler isn't fooled and notices the difference, then I'll come clean with her.

As for poor old Jasper, I think I'll take him on the book tour with me, one last hurrah for the little guy, and then maybe get him an eye patch and seal him up for the future, to be given to Schuyler when she's older and ready for a foolish, sentimental gift from her old man.

This was a tough call. There are times for me, I suppose, when honesty in parenting takes a back seat to the preservation of the fragile world that Schuyler creates. I'm not sure myself if this was the right thing to do. I only know that there's a lot I'll do in this world, right or wrong, to make Schuyler happy.




Happy trails, Jasper...


Sick day


The Jasper Collection
Originally uploaded by Citizen Rob
As I write this, Schuyler has been asleep for about thirteen hours straight. She was sent home from school yesterday with a temp of 100.3, and while she spent the day at home with Julie in good spirits and seemed to be her usual happy self when I got home from work, she crawled into our bed at about 6 last night and is still there now.

It's interesting to me how much energy seems to get sapped out of the world when Schuyler is sick. It makes me realize exactly how much of my own attitude and enthusiasm is drawn from her. Anyone who has met Schuyler knows what I'm talking about. Her energy is contagious. Here's hoping that whatever has her laid out for thirteen hours (and counting) isn't.

I take off for my book tour in two days. Houston on Saturday, over to Austin on Sunday, and then San Antonio on Tuesday. If you're in town for any of these, come out and say hello. I'm looking forward to this as much as anyone looks forward to driving over 800 miles in five days. There are a lot of people I'm looking forward to seeing on this trip, and I'm really excited about meeting new folks as well. My social circle in Plano is pretty limited. (And short, and mute.)

March 3, 2008

"Positively TEXAS!"



Another TV moment, from "Positively TEXAS!" on CBS 11 in Dallas, hosted by Iola Johnson. I didn't expect it to run until next weekend, but my DVR is apparently smarter than I am.

This interview felt a little awkward, for some reason. Perhaps it was all those extra chins I wore that day. Good lord.

March 2, 2008

Media mentions



(Photo by Bruce Maxwell, Star-Telegram)

Two quick media moments for the scrapbook:

1) There's a story in today's Fort Worth Star-Telegram, called 'Schuyler's Monster' gives voice to family. I know I'm not exactly objective, but could that photo of Schuyler be any cuter? Also, she is kind enough to mostly cover my entirely uncute face, which I do appreciate. Trust me, you do, too.

2) I can't believe I forgot to mention this back when it ran, but I was the subject of a Quirky Nomads podcast, in which I read from an entry from this here blog o' mine. (I need to learn how to read without sounding like I'm recovering from a head injury.)

March 1, 2008

"Don't believe you're all alone."


Us
Originally uploaded by Citizen Rob
I've mentioned it before, but there's a line that I love from a song sung by my favorite musician, Andrew Bird, in a cover of a song by The Handsome Family. The song is called Don't Be Scared, and seems to be (at least to my ears) about a child who lives mostly in an internal world and who perceives our world differently. The line that always reminds me of Schuyler is this one:

"Don't be scared. Don't believe you're all alone."

I frequently think about Schuyler being alone, which is interesting only in that practically speaking, she is almost never actually alone in an immediate sense, aside from when she plays in her room by herself. Even then, I get a little nervous, because one of my greatest fears is that the seizures that she is statistically likely to develop could land on her while she's by herself, and the thought of her going through that for the first time without someone there with her makes me want to go roust her out of her bed this very moment and keep her by my side until I grow old and die, and not let her go one second before.

In a larger sense, I worry about what will happen to Schuyler after we're gone. I think about her having to make her way in this mean fucking world, and I almost can't stand it. It's funny how fear and love go hand in hand so often in our lives. The very act of opening up your heart to another human being can also reveal such vulnerability and rawness that to contemplate abusing it feels like imagining a murder. Or a suicide.

Yesterday I watched Schuyler charge through her little world as a reporter, a photographer and a videographer from the Dallas Morning News followed her around at school. I was once again reminded how easily she adapts to change, how in fact she thrives on it. Schuyler only seems to stumble when things become too routine; her world thrills her when it throws her curve balls.

I envy that about her. Last night, I attended a local music showcase and got to hang out with a newish friend whose media work I've always admired, and I had a great time being me for a change, not The Author or The Father or anything else. And yet, I was still aware the whole time of how shy and unwieldy I can feel in unfamiliar social situations. Sometimes I feel like Bigfoot, dressed up like a normal person and trying to fit in despite being, well, a big clumsy monster. It is in those moments that I appreciate Schuyler's breezy ability to embrace the world on her own terms.

In my dreams, Schuyler talks to me, telling me that things are going to be okay. I think she means more than just her own monster battle.

February 27, 2008

Comedy monster

My favorite moment from the Weekend America interview didn't actually make it into the broadcast. Reporter Michael May was asking Schuyler questions about how she communicated. She was giving some of her answers on her device, but she was also verbalizing a lot. I was there to help translate, as her words can be hard for the uninitiated to understand.

"Schuyler, how did you talk before you got your device?" he asked.

She thought about it for a few moments, trying to remember back that far. Finally she held up her hands.

"My hands!" she said, indicating that she was learning sign language before she got her Big Box of Words.

As she answered, a smile crept across her face. She then held up her feet and pointed to them, cracking herself up as she answered.

"But not my feet!"

February 25, 2008

Trek



This is via Danielle, whose fun disposition belies the fact that she has written some amazing stuff. She's a medical student who is about to be unleashed on the world, and when I read entries like this one (my personal favorite, among many), I for one am glad.

February 24, 2008

What's on TV?



"Think" on KERA Channel 13, Dallas.

(Hosted by the very cool Krys Boyd.)

Topic A Father's Journey with His Wordless Daughter

Guest Robert Rummel-Hudson, Peter Brown, & Kent Haruf

Description What can we learn about tenacity and joy from children, even when they're unable to communicate verbally? Robert Rummel-Hudson, whose daughter was diagnosed at age 3 with polymicrogyria, a rare disorder that leaves her unable to speak, will join us this evening to discuss his family's triumphs in the face of an extraordinary challenge. His book is "Schuyler's Monster: A Father's Journey with His Wordless Daughter" (St. Martin's Press, 2008).

February 23, 2008

Media for Monsters



Yep, that's People Magazine. Obviously, this was very cool.

American Public Media's Weekend America has posted their story about Schuyler, which you can also listen to on the page or via a podcast. (I tried embedding it here, but apparently I am not so bright.)

Speaking of being not so bright, apparently I fooled at least one person. I appeared on Think last night, and in a followup to D Magazine's Frontburner, the host, Krys Boyd, said, "He's great. Funny and candid and very, very sharp."

Which was also very, very cool. Usually I'm sharp like a Weeble, so it's nice to know I can pull myself together when necessary. I'll post the interview whenever it becomes available.

If you were considering coming to either of my book signings but decided against it, you missed what can only be described as Extreme Schuyler. On Friday night, she was rambunctious and crazy and starring in her own little variety hour special. The crowd was packed with people who know and love her, including my family, so it was to be expected. At today's signing, she became an unashamed capitalist, sitting beside me at the signing table and smartly handing the book to people as they walked up. She even participated in the signing, using funky pens made for her by one of her teachers.

If you were to suspect that I have never in my life had a prouder moment than the one in which I sat in a Barnes & Noble autographing copies of my book with Schuyler signing them right alongside me, well, you'd be correct.

February 22, 2008

Pimping my stuff like Chelsea, yo.


SCHUYLER'S MONSTER
Originally uploaded by Citizen Rob
This weekend's media fun:

Think (KERA 13, Dallas) -- Friday, February 22, 2008, 7:30 pm

What can we learn about tenacity and joy from children, even when they're unable to communicate verbally? Robert Rummel-Hudson, whose daughter was diagnosed at age 3 with polymicrogyria – a rare disorder that leaves her unable to speak, will join us this evening to discuss his family's triumphs in the face of an extraordinary challenge. His book is "Schuyler’s Monster: A Father's Journey with His Wordless Daughter" (St. Martin’s Press, 2008).

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Weekend America (American Public Media) -- Saturday, February 23, 2008

Where to Listen

Podcasts and RSS feeds

February 21, 2008

Surreality Show


Proof that I clean up okay
Originally uploaded by Citizen Rob
I'm finally getting a moment to sit down and actually update, after a busy week in New York. I arrived on Tuesday, after a flight through high winds so bad that there were no fewer that THREE people utilizing barf bags, one of them sitting in the row in front of me. Being in the back of the plane makes for an especially wild ride in high winds, although I must confess, I thought it was a lot of fun, aside from the entirely unwelcome puke whiff.

Tuesday evening was as surreal as any I've ever experienced. Michael Malice is now a New York Times bestselling author, but he remembered what it felt like the first time he was published, so when he showed up at my hotel, he knew exactly where to take me: on a quick tour of Manhattan bookstores to actually see the book on the shelves and, you know, take photos of it. I'll be cool one day, and maybe even all jaded about the whole writing process, but for now, I can allow myself an evening of extreme dorkitude and enjoy the moment like a tourist in my own life.

(My favorite moment came when a security guard at the Barnes & Noble at Union Square told us we couldn't take photos. Michael explained that I was the author of the book. "I don't care," the guard said. "You can't take photos in the store." I thought that was awesome. My fancy pants did not dazzle him in the least.)

Not once but TWICE during the evening, I was actually recognized on the street outside two different bookstores. Imagine my ego as a giant blimp, filled to bursting with equal parts self-importance, terror and an appreciation for the absurd.

The book release party itself was great. I got to meet a lot of people I'd only known online previously, and the number of old friends who showed up was staggering. I can't tell you the last time I wore a suit, on that wasn't a rental, anyway. but I think I cleaned up okay for the occasion. All in all, it was an amazing way to kick off the book's release. I felt like the pretty girl at the prom.

There have been a lot of really nice things written about the book by my friends in the past several days. Here are just a few:

Pamie (for the Dewey Donation System, which I'm very happy to be contributing to this year, in the form of a signed copy of the book as a prize for donations)

Omar (who contributes to the expansion of my ego to near-critical levels on a regular basis)

Erin (who shares her own memories of a pivotal part of the book, and her feelings about Schuyler)

John Scalzi (whose writerly opinion means a lot to me)

Michael Malice (sharing his thoughts on our whirlwind tour of Manhattan bookstores, and on how how our friendship seemed unlikely but turned out to be almost inevitable)

(EDITED TO ADD) Chris Naze (one of the very early friends who I met online; we are either Old Skool, or just old.)

Now I'm sitting in the lobby of my hotel, waiting for a car to come pick me up, and I'm torn between the feeling that I just got here, so there's no way that it's already time to leave, and the very real absence in my life of my family, and particularly of a little girl whose presence I feel next to me constantly, even when she's so far away.

February 16, 2008

Monster Days


Schuyler
Originally uploaded by Citizen Rob.
Today the book insanity begins in earnest, or at least the part that takes place in the real world rather than the one that looks out at my from my screen here. Until now, most of the excitement of this whole book experience has taken place online. It has all felt almost virtual, like becoming emperor in Civilization. Ruling the world is nice, but defeating the Visigoths doesn't mean you don't have to stop to heat up some Chef Boyardee for your kid.

Today it all steps into the real world. A reporter from a public radio show called Weekend America is going to spend the morning with Schuyler and myself. (Julie will be at work, which is fine with her; as always, she prefers to be the silent partner.) I feel sort of bad about how the day is starting off; thunderstorms are rolling through and are probably going to wreck the better part of the day. I hope our crapy little apartment makes for compelling radio.

The next couple of weeks are going to be hectic, in the best possible way. Tuesday is the big release day, of course, although the book is already making its way to some stores (and is even being delivered to the UK by Amazon, apparently). I'll be getting up bright and early that day to fly to New York City, for the Mediabistro Book Release Party on Wednesday. Then I fly back to Dallas on Thursday.

Friday will begin with a bang. I'll be in the tv studio at our local PBS station, recording a segment for Think, a show that I actually like a great deal. Then, later that day, I'll be recording a podcast interview for Jumping Monkeys (and how often do you get to say that?), before ending the day with a reading and signing at Julie's store. The next day, I'll have another signing at another Barnes & Noble in Dallas.

Next week will include another tv appearance, on a local CBS show called Positively TEXAS!, and a return to the public radio station for a taped interview for KUT Radio in Austin. March will start off with more book signings in Arlington, Houston, Austin and San Antonio. And at some time in all this, People Magazine will be reviewing the book, hopefully without employing words like "crap" or "suck" in the process.

It's exciting and terrifying, all of it. And yet, in the midst of it all, real life goes on. With everything that is happening, the thing I find myself wanting to tell you about is how Schuyler had a week in which she was out of school on Monday and without her device for an evening (hers had to be sent back after the screen failed, and the loaner didn't arrive until the next day), and yet she still managed to come back on Friday and do really well on her spelling test. I'm a little embarrassed to say that she exceeded my own expectations, which is what she does on a regular basis to just about everyone, really. We believe in Schuyler because we know how tenacious she is, but we also fear her monster, in ways that she never does. Schuyler never fails us, and yet our fear for her still persists, and shakes our faith, to our shame.

And that, my friends, is what my life is like. It's one in which there's a book, and a little girl, and an invisible monster that still colors every aspect of our lives, both good and bad. All this book business is exciting and surreal and wonderful. I don't take a bit of it for granted, not for a moment, and I'm incredibly grateful for every moment of it. But there's a reality here, the same one that is omnipresent through every good day and every bad one.

It's the thing that sits silently watching through it all, the thing that made all this happen and yet the thing that I'd trade away every bit of this new success, just to be rid of it. I'd give it all up without hesitation, just to hear Schuyler say "Good morning" when she wakes up in a few hours, or to watch her talk about Hannah Montana with her friends, or to take away the lurking phantom of seizures that haunts her future.

I love that Schuyler's Monster is doing so well, but I hate that Schuyler's monster is, too.

February 12, 2008

Perfect Storm


Storm
Originally uploaded by Citizen Rob.
When I went to bed last night, I was aware of the possibility of thunderstorms moving through the area, but when they arrived in the middle of the night, they announced themselves like something from a 1950's monster movie. If there was any slow buildup, we slept through it, right up until the bright flash and deafening BOOM that awakened us in a chaotic frenzy of vaguely coherent obscenities.

A few seconds later, Schuyler was standing in the doorway.

The comparison to a monster movie is a good one for her, actually. One of the things that Schuyler and I share is a love for those movies and, more generally, the thrill of being scared. (Julie has been successfully vetoing my taking Schuyler to see Cloverfield for weeks now.) When we watch a scary movie, Schuyler will cower behind a blanket and make little whimpery sounds, but if I try to turn it off or change the channel, she gets well and truly pissed off. She has always been a thrill junkie.

Thunderstorms are like scary movies for Schuyler. Even at 3 o'clock in the morning, once she's found her way to our bed, she's as happy as she can be as the lightning flashes and the thunder shakes the windows. She "wow"s at the lightening and the rain hitting the window so hard that it sounds like hail, and she squeals and giggles after the thunder. As sleepy as I am at that hour and as much as I know how zombiesque we'll all be the next morning, I still can't help but stay awake and watch her little face, illuminated by the steady flicker from the storm. I don't need words from her to see how happy she is when the storms rattle our world.

Middle of the night storms are like monster movies that appear out of nowhere, and I love them unconditionally, probably for the same reasons Schuyler does.

February 10, 2008

The surreal becomes real...


By the way, remember to join the Schuyler's Monster mailing list if you want up-to-date information on book stuff.

Update, 2-11-08 - Julie just called from her Barnes & Noble to say that the book actually arrived this morning, a week early. Can I hear a woot?

February 7, 2008

We may be comin' to your town...


Monster & Monster
Originally uploaded by Citizen Rob.
A lot of people have been writing to ask about upcoming appearances, so here's what I've got so far.

(More details, including links to maps, are available on my Appearances page.)

---

Book publishing party
Wed, Feb 20, 2008 -- 6:30 pm
New York, NY (RSVP required)

Fri, Feb 22, 2008 -- 7:30 pm
Barnes & Noble - Plano/Creekwalk Village
Plano, TX

Sat, Feb 23, 2008 -- 1:00 pm
Barnes & Noble - Prestonwood Center
Dallas, TX

Sat, Mar 1, 2008 -- 2:00 pm
Barnes & Noble - South Arlington
Arlington, TX

Sat, Mar 8, 2008 -- 2:00 pm
Barnes & Noble - Town & Country
Houston, TX

Sun, Mar 9, 2008 -- 2:00 pm
Barnes & Noble - Arboretum
Austin, TX

Tue, Mar 11, 2008 -- 7:00 pm
Barnes & Noble - Fiesta Trail
San Antonio, TX

2008 Assistive Technology Cluster Conference
(Keynote Speaker)
Tue, Jul 29, 2008 -- 9:00 am
Richardson, Texas

Southern Festival of Books
Sat, Oct 11, 2008
Nashville, TN

The 2008 ASHA Convention
American Speech-Language-Hearing Association
Nov 20-22, 2008
Chicago, IL

EDITED TO ADD: And possibly a conference in Detroit in July.

Coincidental booking

Holy crap, I just realized, and I mean just this moment, that I will be doing a book signing in Austin during the same weekend as the SXSW Festivals. I'm not sure what this will mean for me, other than I will probably end up sleeping in my car since all the hotels are probably already booked. Does it mean that absolutely no one will be at my signing because they'll all be at SXSW? Or does it mean that I'll have lots of people at my signing who wouldn't be there otherwise because they're in town for SXSW? No idea.

Well, if you're going to be in town anyway, I hope you'll come listen to me jabber and maybe talk to me afterwards. I'll also be in Austin for another day after that before my event in San Antonio two days later. Let's hang, yo.

February 5, 2008

Pinwheeling

I did an interview for Jennifer Graf Groneberg over on her blog, Pinwheels, mostly about writing. Go check it out, yo.

Jennifer has her own book about parenting a special needs child, Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome, coming out in April and available for pre-order now.

February 1, 2008

Well, we were going to have this conversation eventually...


Wondertime layout
Originally uploaded by Citizen Rob.
The entire Wondertime Magazine story has been posted online, albeit without the very striking and beautiful layout that you'll see in the print version when the March issue is released. It really does look great, so I hope you'll pick up a copy when it comes out.

The article is based on part of the book itself, although significantly condensed, so consider this something of a sneak peek of the book. Having said that, I feel like I ought to say a little bit about the subject matter, which might surprise some of you.

When I was told which chapter Wondertime wanted to run excerpts from, I was initially hesitant, for reasons that will become clear pretty quickly once you start reading. I mean, none of it is a secret (or won't be much longer), and if Julie and I didn't want it out there, then putting in the book would be a pretty stupid idea. We thought it was important to talk about it, though. The things we went through are the same things that most parents of broken children experience in some form or another, and pretending we were perfect people wouldn't have just been dishonest. It would have been boring as well.

When I talked to the editor at Wondertime, she expressed the same thoughts, which is why they wanted to feature that particular chapter in the first place. They felt that the problems of special needs families tend to get glossed over, which I think leaves a lot of struggling couples feeling as if they're the only ones who stumble. In the end, I came to see the benefits of centering on this section of the book, and so I proudly present our dirty laundry. Enjoy.

To Have and to Hold -- Wondertime, March 2008

(By the way, in case you weren't aware, Wondertime is actually published by Disney. I consider it a personal point of pride that I am responsible for The Mouse printing the word "asshole". Sorry, kids.)

Philanthropy and boobs

I don't know about your friends, but I know some pretty remarkable and generous people, and of them all, I can't think of one that I admire more than my friend Dana. She has been a good friend to my family and me since before Schuyler was born, and I can't think of anyone who we've been able to consistently count on more than her. I know that I'm not the only person who feels that way, too. We miss her madly.

Back in the summer of 2000, Dana embarked on a crazy bicycle ride from Boston to New York, benefitting AIDS research. To me, the person who has to have an internal dialogue every day I go to work concerning whether or not I should take the elevator to the second floor, this was an astounding achievement.

Now she's doing it again. This time it's a three-day walk benefitting the Susan G. Komen for the Cure and National Philanthropic Trust, funding research, education, screening and treatment of breast cancer.

Go to Dana's Philadelphia Breast Cancer 3-Day page and help out, won't you? It's for a great cause, and besides, as Dana points out, "EVERYONE LIKES BREASTS". Which I think is probably a universal truth.

January 30, 2008

Mmmm, new book smell


So, guess what the FedEx guy brought today?

I guess this is really happening. Either that, or someone went to a lot of trouble to tool me, printing up one copy of a book.

Nineteen days...

(By the way, I also wrote an article called "My Name is Schuyler" for the February issue of "Communication Without Limit", the monthly newsletter for the Prentke Romich Company, makers of the Big Box of Words.)

January 29, 2008

Wondertime supplement

As part of the upcoming article in the March 2008 issue of Wondertime Magazine, you may now read a web exclusive interview I did as a supplement to the print article.

If you read it and find yourself wondering if I really am that eloquent, or if Wondertime was able to edit out all the "um"s and sputters and parenthetical blathering that I am prone to when actually speaking rather than writing, well, I'm going to say that I am just that naturally well-spoken.

No, really. What?

January 26, 2008

But I'm not the only one


Summer 2003
Originally uploaded by Citizen Rob.
I attended a media party here in Dallas the other night. These sorts of things aren't always the easiest for me, and not just because I don't drink myself into "life of the party" mode so much anymore. (What was cute when I was in college would probably just be sad now that I'm, you know, thirty-ten.)

Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.

The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.

The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.

I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.

Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.

That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.

And then you wait for it to slowly fill again, I guess.


One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.

On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.

I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.

I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.

God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.

In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.

I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.

In my dreams, she speaks to me, but I almost never speak back to her.

The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.

January 24, 2008

Schuyler speaks. Sort of.


Us
Originally uploaded by Citizen Rob.
Last month, Schuyler was interviewed by Tim Rogers of D Magazine, a cool Dallas area monthly. It was a surreal experience, in which he emailed questions and she answered with the Big Box of Words, which was attached to the computer like a second keyboard. She took the interview very seriously and crafted her answers very carefully. I set up a camera to take pictures while we did it, because I am a nerd.

The print version hasn't hit the news stands just yet, so I can't say how it looks on the page (or if it's even in print at all, come to think of it), but you can read the article, "Thinking Out Loud", on the D Magazine web site.

There will be absolutely no living with her now...

January 22, 2008

A Different Kind of Normal


While poking around the Wondertime Magazine site yesterday (and NOT looking for mentions of my upcoming story, because that would be narcissistic and weird, right?), I came across the story that had originally attracted me to the magazine in the first place. "A Different Kind of Normal", by Charlotte Meryman, detailed the story of the Foard family, of parents Michelle and Jim and their son Jimmy, who suffers from an extremely rare chromosomal disorder called Alfi's syndrome. The story ran in four parts (which was a little maddening since at the time, Wondertime only ran four issues a year), and it's an excellent exploration of the issues that face special needs families, particularly ones where communication is an issue. It's not an exaggeration to say that Meryman's story had a pretty profound influence on how my own book turned out.

What I hadn't seen before, however, were the accompanying videos, which may have been produced after the series ran. Go watch the complete four webisodes. At one point you'll see Jimmy using a slightly older version of Schuyler's Big Box of Words.

The world is full of stories like Jimmy's and Schuyler's. They deserve to be heard.

January 15, 2008

The Quiet World of Ice Girl Gallery

"How far that little candle throws his beams!
So shines a good deed in a weary world."
-- William Shakespeare














January 14, 2008

The Quiet World of Ice Girl

We went for a walk in downtown Dallas yesterday, not for any particular reason other than to visit the Crow Collection of Asian Art, which Julie had been wanting to see for a while and which was within the budgetary range most suitable for the grand Rummel-Hudson estate. (Free, of course.)

After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.

Schuyler was taken by it immediately.

She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.

Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.

Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.

But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.

Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.


My housekeeping? It's good, thank you for asking.


Good Housekeeping
Originally uploaded by Citizen Rob.
Well, I've wanted to mention this for a long time, but I didn't expect it to happen quite this soon.

The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.

The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.

I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.

-----

While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.

Book Publishing Party
with special guest author
Robert Rummel-Hudson

(Schuyler's Monster: A Father's Journey
with His Wordless Daughter
)

Hosted by mediabistro.com

Dip
416 Third Avenue
(between 29th & 30th)
New York, NY 10016

RSVP required


Stalkers, start clearing a space in your freezer for my head. A swell hat would be nice, too.

January 13, 2008

Worst Email Ever

My friend Michael Malice has a new site that has a lot of potential for fun, Worst Email Ever: The Internet's Inbox. I made tonight's cut because of an email in which I told him that when I saw the news story about wrestler Chris Benoit murdering his family, I immediately thought of him. (Michael Malice just saw a collaboration of his published, an autobiography of pro wrestler Matt Hughes, so it wasn't an entirely random thing to say.) Michael is responsible for the description-defying Overheard in New York, after all. And how many people make this kind of impression on someone like Harvey Pekar?)

I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.

My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.

January 10, 2008

SCHUYLER'S MONSTER: The Author on God



Transcript:

Rob: I think a lot of parents with broken children find God, and they find religion. They find a spirituality that sustains them. I certainly understand that, and I certainly respect it.

For me, I've always been an Agnostic, and I think I'm more agnostic now than ever before. You know, Schuyler's situation certainly raises a lot of questions, and it shakes any faith that you might have. But I've never given up on the idea of God. Julie says that she thinks the reason I could never be an Atheist is because then I wouldn't have anyone to blame. And I guess maybe that's true.

I do have a lot of questions that I would put to God about Schuyler, about all the kids like Schuyler, the kids who have it so much worse than Schuyler, about how that could happen. How a God of love and compassion can do that. But I don't have any answers.

My faith is in Schuyler, oddly enough. Watching her struggle and watching her fight. And I don't attribute faith to some invisible person in the sky, but I do feel very strongly when I observe Schuyler.

It's funny. I'm not sure if I believe in God, but I believe in Schuyler.

SCHUYLER'S MONSTER: Schuyler's Future



Transcript:

Rob: What do you see in Schuyler's future when you imagine, like every parent imagines their kids', even if they pretend they don't?

Julie: I would love to see her living by herself, having a boyfriend, girlfriend, whatever. You know, partner in crime. Just somebody to take care of her. I worry about that all the time. I don't want her to think that we're her caretakers, you know. Because she's independent like the both of us, and she...

You can tell that she wants to say so much, and she wants to do so much. And maybe that's a cheesy goal, but I just, I want her to be able to travel, and go to the movies with her friends, and drive and experience life and, you know, not have the old people chauffeuring her around and, you know, cleaning up after her. That's like my one goal is for her to, like, have her own life and not have to have us lagging behind her, checking up on her.

I mean, we're her parents. We're always going to be there for her, but you know, you gotta cut that cord. And that's going to be scary. That's kind of a scary thought to me, her being by herself, like, in an apartment like this, and cooking her own meals, doing her laundry, having pets, paying bills. It's a weird concept, because she has no concept of that stuff right now.

Who knows, maybe she won't. But I can dream, can't I?

SCHUYLER'S MONSTER: A Higher Purpose



Transcript:

Rob: Yeah, I don't think anyone who knew me before Schuyler was born would have ever said, "Yeah, that's the guy to raise a child, and certainly a child with special needs." I was... Things were a lot different. I was a very selfish person. I wasn't a bad person, I don't think, but the decisions that I made in my life were very self-centered, and if things got hard, I would bail, I was out. And after Schuyler was born, I learned a lot about myself.

And it wasn't just that I couldn't bail on Schuyler. I found that I didn't want to. You know, we've been through so much, and it's been so hard at certain times, but at no point was I ever, "God, I wish I could get out of this."

You know, Schuyler taught me a higher purpose, and a higher feeling. And that's made me a better person. I'm a much better, a much different person than I was before Schuyler. So I don't think I certainly was the ideal father, but I've really learned to be exactly, I think, much of the time anyway, exactly the father that she needs. In that sense, she's been my greatest teacher.

January 7, 2008

SCHUYLER'S MONSTER: Sadness and Joy



Transcript:

Rob: I think it's pretty clear that I can be a sad person. It certainly comes out in my writing. Schuyler's situation makes me sad. I think about it. Sometimes I have dreams, I dream about her, and in my dreams she talks to me, and she tells me everything's going to be okay. And then when I wake up the next day, it's the first thing that hits me, that it was a dream. So it is sad, and it does weight down on me.

It doesn't seem to be sad for her, though. She's always very positive. She gets frustrated, certainly. But I don't know that she seems to get depressed about it. I think she's accepted the situation and is ready to fight. And so the joy that I get and the strength that I get in my life is that which I draw from her. And in that sense, she's made me a better person. I'm certainly ten times the person I was before she was born.

I think... There's a temptation, I would think, to feel pity for parents who have special needs kids. And yet, I see how much Schuyler has changed my life, and how much she's improved me as a human being, and I sort of think that people shouldn't pity me, they should envy me. They should be jealous because I've got Schuyler in my life, I've got Schuyler doing the "Schuyler Effect" on me.

And if they don't they should. They should envy me. And I hope that comes out in the book, I hope I represent her accurately and in a way that people can see beyond her disability to this amazing person. It sounds like a cliche, and it's absolutely true.

SCHUYLER'S MONSTER: On Language



Transcript:

Rob: You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.

I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.

And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.

You know, in the past, people have asked me, they'll say "How do you think Schuyler will react one day when she reads that you thought she was broken?" You know, that she'll take some offense at the kind of language that we've used. I don't think she will react at all. I certainly don't think she'll be surprised. I don't think she'll feel like she's been deceived all this time.

We are very straightforward with Schuyler about her disability, and she fights it. She brings the fight every day, without any illusions, but also without any expectations that there's something that she can't do. She knows what she has to fight, and she knows that a thing that is broken is a thing that can be fixed. And a situation that requires this kind of work, she's exactly the person to do that kind of work.

So I think if Schuyler reads that one day, she's going to know that I understood, and I cared. I loved her, I loved her enough to take up this fight with her.

Twitch

I'm jumpy today, and it's just not getting any better.

The day started with Schuyler's return to school after two weeks off. This meant that all our usual morning rituals kicked back into gear, including my favorite, singing the theme to Kenny the Shark with Schuyler, but it also meant watching her get onto the school bus again and watching it drive away while trying to suppress the agita and the mental images of various bus-related disasters running through my mind.

A quick look in the mirror before heading off to work revealed that I had something in my hair, something light-colored, maybe shaving cream. Only it wasn't. I tugged at it and ran my fingers through it, only to discover that what I was seeing was in fact grey hair. That's AWESOME.

I got to work just in time to be interviewed over the phone for the upcoming Wondertime piece (and I do not envy the poor intern whose job it will be to transcribe my um-filled babble). Not half an hour later, I received the nice review from Publishers Weekly (it did contain the word "stupid", but they were quoting me, so I have no one to blame but myself), and I was feeling much better about my day.

And that's when the university began testing the tornado warning system.

There really is only so much "BLAT!!! BLAT!!! Severe weather! Take cover! You're all going to die!!! BLAT!!! BLAT!!!" that I can handle today. It's going to give me grey hair.

Oh, wait a minute. Shit.

Bring forth the fancy pants

A new review of the book, from Publishers Weekly...

-----

Schuyler's Monster: A Father's Journey with His Wordless Daughter
Rummel-Hudson, Robert (Author)

ISBN: 0312372426
St. Martin's Press
Published 2008-02
Hardcover, $22.95 (288p)
Family & Relationships | Children with Special Needs; Biography & Autobiography | Parental Memoirs

Reviewed 2008-01-07
PW


The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden "monster" is causing her wordlessness, they endure "two years of questions and tests and at least one unsatisfactory diagnosis." But while Rummel-Hudson initially rages at God for giving Schuyler "a life that would never ever be what we'd imagined it to be," his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a "stupid blind father's love." As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the "gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed," leads him to understand that "she was the one teaching me how to make my way in this new world." (Feb.)

Copyright © 1997-2005 Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

January 5, 2008

SCHUYLER'S MONSTER: Fathers' Stories



Transcript:

Rob: I do think that there is a place for fathers' stories. I think that now more than ever, people want to hear the stories that fathers have to tell.

I think the past fifty years or so have been kind of a weird time for fathers. After World War II, I think fathers in our society were defined by their absence as much as by the things that they did. You had the fathers who were lost in the war. You had fathers who were absent because of their careers, because of their work. You had the "deadbeat dads."

So I think in the past maybe twenty years or so, you've seen this move back towards fathers who want to be involved and are insisting on being involved in their kids' lives. And it's a fascinating time, but it also, it's totally up for grabs. The stories that fathers have to tell are very individual. Especially with a kid like Schuyler, there's certainly no user's manual for Schuyler, and there's no job description for being a father, certainly not a father for someone like Schuyler.

So it's... I'm really excited about the number of fathers' stories that are being told, because they're all different, they're all individual, and I think that's great, and I hope there's more.

January 4, 2008

SCHUYLER'S MONSTER: "The best that we can..."



Transcript:

Julie: I think it's really shown me what I'm capable of, what my strengths are. Learning not to back down to teachers, to school administrators, to our families when they doubted us, that we just kind of did our own thing and persevered.

It's a pretty eye-opening experience, getting handed this huge responsibility for this little person, and being told "You have no guide book, you have no rules. This is what's wrong with your kid, and you have no idea why, and just, here you go, here's the book. Enjoy. Try to do the best that you can."

And I feel like we have done the best that we can. Some days are good, some days are bad. But at the end of the day, I think you and I can feel confident in knowing that we've raised a pretty amazing kid.

January 3, 2008

SCHUYLER'S MONSTER: Advocacy



Transcript:

Rob: You as parents and family of broken children and disabled family members, you are the absolute best advocates for your loved ones. And that's hard. It's hard because it's... we want to defer to experts. Julie and I were both music majors. We had no experience with children. All that we knew was what we, what we felt in our gut about Schuyler.

And, you know, the experts and the doctors, they've been amazing, they've been great for us. But the one thing that they can't do is they can't tell the future. And we want them to, we want to hear that everything's going to be okay.

But the future's not written. You're writing the future, and your child is writing the future. And if you feel like the information you're being given isn't correct, isn't right, you have to go with that instinct. Because nobody knows your child like you do, nobody senses the things that are true and real about your child like you do.

There were two points in Schuyler's life that had we followed the advice we were given, by experts, and really "expert" experts, had we listened to that advice, Schuyler's life would be nothing like it is now. It was the fact that we didn't, we didn't feel right, and that we, we kept pushing for better answers that we finally got them.

So believe in yourself. That's hard, but it's absolutely vital, and in the end, in the end you'll be so glad that you did.

January 1, 2008

SCHUYLER'S MONSTER: Making a New Kind of Family



Transcript:

Rob: Being in a family with a special needs family member, particularly a child, it's very difficult. It's very hard on a family, it's very hard on a marriage. The divorce rate amongst couples with a disabled child is incredibly high, it's very depressing. And it's... it's hard because I think when you're in a relationship, you know, sometimes when things are hard you want to have that person you can turn to. But when that person is also in that same situation, you think that that's an ideal situation. And you know what? Sometimes it's not, sometimes it's the opposite. Sometimes two people fighting the same demons, they just, you know, it's so hard to be sympathetic, so hard to get out of your own head and out of your own world. And it's very difficult for families.

I think for a family to make it work, for a family to work out the issues inherent in having a special needs child, I think the secret is you just have to take all the narrative that society's handed you, all the expectations, and you just have to blow them away, start with a clean slate. Because the rules for your family and the rules for your child are going to be completely new. They're going to be, they're going to be... You've got to find your way, you've got to find your way, because they're not going to apply to anyone else.

I can write this book. I've read a lot of books, and I'll continue to read books, by other special needs parents. But the thing that strikes me is how every one of these stories is different, every single person has a different reaction, every single person, every single family member has a different way of dealing with it.

And that's fine, that's the way it should be, but you've got to find your own way. Because the standard rules aren't going to help you, they're not going to help you at all. They're just going to make you feel bad, they're going to make you feel like you're doing it wrong. But you're NOT doing it wrong, you just have to find the right way, and no one else can tell you that but you.

So it's hard, it's hard to find that, but it's also very rewarding. I can't think of anything in my life that's challenged me more or has made me grow more as a person. So it's worth it. It's hard, but it's worth it.