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.