November 26, 2008

The Legion of Monster Slayers

Originally uploaded by Citizen Rob
The last time Schuyler visited Chicago, almost four years ago, we were taking her to see Dr. William Dobyns, the geneticist at the University of Chicago who had originally diagnosed her polymicrogyria. We went to see him in the hopes of getting some answers, and maybe a few possibilities, but what we got instead were some necessary but hard truths. We arrived in Chicago in January of 2005 in desperation, and we left in heartbreak.

Last week, Schuyler returned to Chicago in triumph.

The three of us travelled to Chicago for the American Speech Language Hearing Association's 2008 conference, as the special guests of the Prentke Romich Company, makers of Schuyler's Big Box of Words. PRC has been amazing to Schuyler, they've opened up her world in ways that we can only now begin to appreciate. It's not just Schuyler, but thousands of kids and adults who suddenly have a voice, thanks to this company and its commitment to a philosophy of giving users not just words, but language. When I wrote Schuyler's Monster, one of the things I had the opportunity to do was to stand up for all those broken kids who suddenly found voices and thank the people who made it possible.

Last week, we got to meet the people behind the Box. Schuyler got to meet the makers of her gentle miracle.

It's easy to be impressed by the enormity of the ASHA conference. I was told that thirty thousand people were in attendence. This is the exhibitors' hall, which you can see is huge and filled with booths, each representing a separate vision for helping someone. It really is impressive on a large scale. This is the Village made real.

But something happens when you actually get down onto that floor and start looking at the products being promoted. That's when ASHA becomes truly impressive, when you start to see the innovations that exist entirely to help people in need, mostly children, and when you meet the people behind those innovations.

I had the extreme honor of meeting Bruce Baker, who developed Semantic Compaction (or Minspeak) back in the 1980s. Minspeak is currently used by around 80,000 people worldwide. Its principles inform a number of communication techniques, including Unity, the language that drives Schuyler's Big Box of Words. In meeting Bruce, Schuyler was able to shake hands with the man who is literally responsible for giving her words. The fact that he reacted to Schuyler as if meeting her was a singular honor of his own speaks to the character and commitment of this man. I found a quote by Bruce just now that says it all.

"The most rewarding aspect of my work is getting to know people with complex disabilities who, though unable to talk, want to participate in life to its fullest." Bruce has given companies like Prentke Romich the tools to do just that.

With Richard Ellenson

In a speech I gave over the summer, I talked about how those of us who are parents of broken children have been ambushed by their monsters. We've become warriors for our kids because we were chosen to do so, by Chance or Fate or the bully God, and we need the doctors and the teachers and the speech-language pathologists who have chosen to properly arm themselves and go into battle with those monsters. Plenty of people can attest to the fact that I was perfectly happy being a selfish ass before Schuyler was born. I've always been humbled by the thought of those people who saw a need in society and stepped up to do something about it. I didn't choose this life; they did.

But it's not so simple. The truth is that most of these people, many of whom have become heroes of mine, have come to the battle with their own casualties and their own life lessons. They were chosen, too, and in being chosen, they've changed the world.

One gentleman whom I have wanted to meet for a long time showed up at the PRC booth late in the afternoon. Blink Twice CEO and President Richard Ellenson was a successful ad executive whose son Thomas was left with severe verbal limitations due to cerebral palsy. When traditional augmentative speech devices didn't work for his son, Richard stepped up and developed one that did, focusing on ways to communicate quickly and effectively.

The result was the Tango, and I've been extremely impressed with the work Richard has done. Despite her enthusiasm for the Tango when she got a chance to play with it, Schuyler's needs aren't really appropriate for this device; she's thriving on the language-building capabilities of the PRC Vantage. But I recognize very clearly that there are design and philosophical aspects of the Tango that are revolutionary, although like most great ideas that change the world, they seems obvious once you see them.

The Tango doesn't look or feel like an assistive device for a child with a disability. It uses natural-sounding language (and some very high tech magic to turn adult voices into children's) and kid-friendly graphics. More importantly, in a world where Schuyler and her friends are familiar with iPods and game controllers and the Wii, the Tango melds smoothly into their lives, not as a medical device but as part of their digital world. From a design standpoint, the Tango is just one more crucial and cool device for these plugged-in kids to recharge at the end of the day.

I talked to Richard about what I thought was the brilliance of the Tango. "If you walk around this hall, you'll see a lot of impressive and wonderful innovation," he said. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"

I love Richard because he brought his specific talents as an advertising innovator to bear on the problem that his son presented, and in doing so he made a difference. Everywhere I turned, I met people doing the same thing, for the same reasons. They were taking their life skills and unique talents and they were turning them into weapons against the monsters.

Including me, I guess, in my own small way.

When your life finds a sense of mission, it's humbling, and it's energizing. Mostly, though, it just makes you roll up your sleeves and get busy.

With PRC's Sarah Wilds

Easily, the most gratifying part of the experience for us was the chance to meet and work with the amazing people at Prentke Romich. For the past three and a half years, Schuyler's life has been changed and her horizons exploded by a device called the Vantage Plus. It's her Big Box of Words, and PRC makes it. When a company has such an astonishing impact on the life of someone you love, it can be a surprise to discover the humanity behind that company.

Prentke Romich has been very enthusiastic about promoting Schuyler's story, and while I recognize the benefit that they derive from her story and the exposure that the book has given to their cause, the fact remains that it is a cause, and one to which that we are thrilled to be able to contribute. When we met and got to know the people of the company, it became clear that the work that they do is their mission, and the passion that goes into that work is fired by stories like Schuyler's, stories that show how much of a difference they are making in the world. When they met Schuyler, their pride in her accomplishments was palpable. I know just how they felt.

Our gratitude goes out to our new friends Bob Nemens and Cherie Weaver from PRC's marketing department, and the rest of the PRC crew in Chicago, all of whom Schuyler fell in love with, as she tends to do with people of quality. Thanks to Trudi Blair, Judith Meyer, Angie Neveadomi, Sarah Wilds, Margaret Perkins (sorry once again for appropriating your name in my book) and Julie Packer for everything you did for us. Sarah and Julie P. in particular were subject to Schuyler's "I'm upgrading from my smelly old parents" affections. How sad for her that at the end of the day, Schuyler is always stuck with Julie and me.

Finally, I want to say what a pleasure it was to meet David Moffatt, President of PRC. That's a daunting thought, meeting the president of the company, but Schuyler saw right through to his big heart, and decided he was her new best friend in a hurry. David was incredibly generous for bringing us to Chicago, and was a gracious host to us while we were there. Meeting him and watching him with Schuyler, it became clear why he does what he does. Well, that's true of everyone at PRC.

Bob put together this little video to send to PRC people. I think the thing to notice is that while I'm being a big Chatty Cathy doll, Schuyler is serious and focused. She signs books like a professional, and is polite and cool. She appears to be taking care of business.

This was an interesting trip because while I was in familiar territory, it gave Schuyler and Julie the opportunity to take on very public roles. Schuyler was a champion, signing every single book that I signed (over a hundred in about two hours, I believe) and charming everyone she met. She spent a lot of time exploring different PRC devices, particularly the ECO-14 and the Vantage Lite, and seemed to take her role very seriously. She had all day Saturday to run around Chicago, gawking at the Bean and stalking dinosaurs at the Field Museum, but Friday was all business. When people ask how Schuyler is dealing with all this book business, I can tell them that she takes it seriously, and she is proud of the work we've done. The work we've done, and that we continue to do.

The conference was a new experience for Julie. From the very beginning, she has chosen to keep a low profile, both in my online writing and, to a lesser degree, in the book itself. I'm not sure I have the talent or the ability to tell Julie's story, which is very different from mine, so I've certainly been okay with her decision to lay low. But the thing that seems to escape some people (including the charmer at the conference who asked her how it felt to be "eclipsed") is that Julie is an incredible mother to Schuyler, and is every bit as involved in the decisions towards her care as I am. We play good cop/bad cop a lot, but we tend to trade roles and keep everyone guessing.

Julie's fantastic in whatever role she takes on. While I present a very public face and build an extremely visible platform from which to advocate for Schuyler and her broken brethren, Julie quietly but brilliantly does her work. Her work is God's work, really, regardless of whether or not he actually bothers to do it himself. In Schuyler's life, God is like a crazy uncle who might show up at Thanksgiving drunk and belligerent, or not at all. For Schuyler, God is optional. She has Julie, and that's enough.

At ASHA, Julie suddenly found herself presenting a public face, one that she'd really never been asked to show before now. I'm proud to say that she stepped up and was brilliant. She was articulate and informed, and she expressed the hardships and the victories of her life as Schuyler's mother with eloquence and clarity. I've never been prouder of her, or of Schuyler.

Team Rummel-Hudson was on last week. We get it right sometimes.

The design innovations I was talking about earlier in regards to Richard Ellenson are also reflected in PRC's newest generation of devices. Putting Schuyler in front of these machines was perhaps the most personally gratifying part of the trip. She has reached the point where she dives into the technology behind these devices without hesitation, and more importantly, she intuitively gets how to use them.

We came to an important decision at ASHA, after watching Schuyler explore two different and amazing devices. After exploring some funding possibilities that didn't exist four years ago, Julie and I have decided to attempt to move Schuyler up to the next generation of PRC device, in this case the Vantage Lite. In a lot of ways, it's not terribly different from her current device, but it has some new features and a new design that makes it easier to integrate into her daily life. PRC has paid attention to what its users need, particularly their younger ones, and it has created a device that looks and feels less like a speech prosthesis and more like a digital enhancement to her world.

And it comes in pink. Lord help us all...


Thirty-ten was harder. At this point, it's just freefall.

Middle age? WHEEEEEEE!

November 17, 2008

Weekend at Burny's

I wanted to tell you about a fun party I attended in Southern California over the weekend, and I shall, but it is probably worth mentioning at the outset that during the duration of my stay in Orange County, the Apocalypse was raging on a hillside directly across from the one where I was staying.

So yeah. Apparently in California, stuff burns up.

We first noticed the Corona fire across the way from us on Saturday morning, and as the day wore on, the whole hill was engulfed. It closed highways, which kept many people away from the party, and as we watched the local news all day, we saw just how freaky and unreal the whole thing was. The fire was jumping across the highway. People were abandoning their cars. Trees were, well, they were exploding. I had to hear that from two different sources before I'd believe it. Exploding trees. I'm no scientist, but if you've got exploding trees, that might just account for your wildfire problem. I mean, it's probably worth checking out, at least.

The party itself was a lot of fun. It's an annual holiday shindig (called, appropriately enough, "Shindig") thrown by a group of people who have been friends for years, and one of whom was swell enough to invite me. I've been close friends with Monique for a long time, so it was nice to see her again in real, actual molecular form. (She recently helped me out tremendously by contributing something quite significant and very cool to the paperback edition of my book, which you will have to buy and read if you want to know more, plugga plugga plugga...)

Anyway, it was a fun party, the details of which I won't bore you with. I got to meet some people I'd only known online, made some new friends (which is always a little difficult for me, shy little bunny that I am), and most importantly buried the hatchet with someone with whom I should have reconciled years ago. I became quite blissfully impaired with strangely few consequences the following morning (aside from the wrinkles in the clothes I slept in, which I don't believe I've done since the blurry days of college), I got to dress fancy (although I'm still not entirely convinced that the outfit I chose for the "black and white" theme didn't make me resemble the love child of Johnny Cash and a clown-for-hire), and received (via the blind gift exchange) a bottle of local brew and a combination bottle opener/wooden dildo.

All that, plus the End of Days. Some people know how to throw a shindig.

November 14, 2008

Schuyler's next excellent adventure

The Rummel-Hudsons
Originally uploaded by Citizen Rob
(PRC press release)

PRC to Host Schuyler’s Monster Author Robert Rummel-Hudson in Booth #1031 at 2008 ASHA Convention

100 Free Copies of Schuyler’s Monster, A Father’s Journey with His Wordless Daughter Offered to ASHA Conference Attendees


Wooster, OH, November 17, 2008: Prentke Romich Company (PRC), the worldwide leader in alternative and augmentative communication (AAC) language systems and technology, invites ASHA attendees to meet author Robert Rummel-Hudson in Booth #1031 on Friday, November 21, and to enter PRC’s drawing for a free copy of his 2008 book, Schuyler’s Monster, A Father’s Journey with His Wordless Daughter.

In the acclaimed memoir, Rummel-Hudson shares the story of his daughter Schuyler, now eight years old, who was born with a rare neurological brain disorder that prevents her from being able to speak. Using PRC’s Vantage™ Plus speech-output device, the high-spirited youngster is now able to communicate her thoughts and feelings at home and at school.

PRC will be giving away 100 copies of the best-selling book in a random drawing held Friday, November 21. ASHA attendees can enter the drawing by visiting PRC in Booth #1031 on Thursday, November 20, and completing an entry form. Rummel-Hudson will sign books on Friday between 10 am – noon and 3-5 pm. ASHA conference attendees can enter to receive a copy at the conference or are welcome to bring their own copy for the author to sign.

Visitors to the PRC booth also will see the newest of PRC’s AAC devices, Vantage™ Lite, a dedicated device designed for AAC beginners and those ready to advance toward fully independent augmented communication.

The second in PRC’s popular new line of “Lite” devices, Vantage Lite offers the same powerful language and communication features of PRC’s classic Vantage™ Plus but adds an array of hardware and software innovations, including:
  • Compact case with built-in handle for greater portability;
  • “High Brightness” display with LED backlight and wide viewing angle;
  • Magnesium frame that prevents damage from bumps and drops;
  • Bluetooth® connectivity for computer access and wireless access;
  • Integrated Bluetooth® phone interface, a PRC exclusive.
Vantage Lite is one of six AAC devices available from PRC, all of which feature a proven language system called Unity® that enables children and adults with speech disorders to reach their full potential in spontaneous, independent, and interactive communication, regardless of their disability, literacy level, or motor skills.

About PRC
A 100% employee-owned company founded in 1966 and headquartered in Wooster, OH, PRC is a global leader in the development and manufacture of augmentative communication devices, computer access products, and other assistive technology for people with severe disabilities.

In addition to its powerful communication devices – ECO™-14, Vanguard™, Vantage™, SpringBoard™, and the new SpringBoard™ Lite and Vantage ™ Lite – PRC also provides a wide array of high-quality teaching and implementation tools, therapy materials, curriculum sequences, funding assistance, and training to speech-language pathologists, special educators, and the families of AAC communicators.

You can learn more about the book, Schuyler’s Monster, by visiting Learn more about the author by visiting his blog at

For more information on PRC products and services, go to or call (800) 262-1984.

November 11, 2008

November Eleventh

(Eric Kennington, Gassed and Wounded, 1918)

Strange Meeting
-- Wilfred Owen

It seemed that out of battle I escaped
Down some profound dull tunnel, long since scooped
Through granites which titanic wars had groined.

Yet also there encumbered sleepers groaned,
Too fast in thought or death to be bestirred.
Then, as I probed them, one sprang up, and stared
With piteous recognition in fixed eyes,
Lifting distressful hands, as if to bless.
And by his smile, I knew that sullen hall,-
By his dead smile I knew we stood in Hell.

With a thousand pains that vision's face was grained;
Yet no blood reached there from the upper ground,
And no guns thumped, or down the flues made moan.
"Strange friend," I said, "here is no cause to mourn."
"None," said that other, "save the undone years,
The hopelessness. Whatever hope is yours,
Was my life also, I went hunting wild
After the wildest beauty in the world,
Which lies not calm in eyes, or braided hair,
But mocks the steady running of the hour,
And if it grieves, grieves richlier than here.
For by my glee might many men have laughed,
And of my weeping something had been left,
Which must die now I mean the truth untold,
The pity of war, the pity war distilled.
Now men will go content with what we spoiled,
Or, discontent, boil bloody, and be spilled.
They will be swift with swiftness of the tigress.
None will break ranks, though nations trek from progress.
Courage was mine, and I had mystery,
Wisdom was mine, and I had mastery:
To miss the march of this retreating world
Into vain citadels that are not walled.
Then, when much blood had clogged their chariot-wheels,
I would go up and wash them from sweet wells,
Even with truths that lie too deep for taint.
I would have poured my spirit without stint
But not through wounds; not on the cess of war.
Foreheads of men have bled where no wounds were.
I am the enemy you killed, my friend.
I knew you in this dark: for so you frowned
Yesterday through me as you jabbed and killed.
I parried; but my hands were loath and cold.
Let us sleep now . . ."

November 9, 2008

Bringing my fancy pants to Dayton

I visited the University of Dayton this past week, speaking to a couple of classes and then signing books and giving a presentation. I just wanted to take a moment and say that it was one of the best experiences to come out of this whole crazy book thing. Three days later, I'm still processing it.

There were a lot of memorable moments on my trip, but the thing that stays with me the most are the amazing students I met. The questions I got from students were of real depth, and the dialogues I had with them gave me a great deal to think about. I don't remember being that smart or that intellectually curious when I was in college, and I know I wasn't that well put-together. But then, my impressions of the University of Dayton were pretty much the same.

It's an impressive campus, with new facilities everywhere but still maintaining a sense of its history. UD is a Catholic university, run by the Marianists, who focus on issues of social justice and community, and it's clear that this focus permeates the thinking of the entire campus community. I was impressed by the level of commitment that the students maintained in building this spirit of community, both on campus and in the international service learning projects sponsored by the university.

So my thanks to Art and Tracey Jipson, as well as the Department of Sociology, Anthropology and Social Work, not just for having me on campus, but for making me feel welcome (bordering on superstar; my ego may never recover) and for giving me the chance to meet so many students and share Schuyler's story with them. I met some amazing people, and I can't wait to return to Dayton. How many times do you hear that?

November 4, 2008

Her world

In 2001, on the evening of September 11th, I sat in the dark while Julie cried and we both listened to the radio and the rumble of military jet fighters patrolling the skies of the east coast. I got up and went to Schuyler's room, scooped up my sleeping baby girl and brought her to sleep in our bed with us. And the thing I remember thinking was simply, "This is not the world I want my daughter to grow up in."

In the spring of 2003, on my lunch break, I walked into a cafeteria at the Yale Medical School with my friend Dana and sat, numb, as we watched the "shock & awe" bombing of Baghdad on CNN, surrounded by frightened students watching in near silence. And again, I thought of Schuyler, who was only months away from her monstrous diagnosis. I thought of her and the paranoid, grey world in which she was growing up, unaware of how much less certain it was soon to become for her. And again, it was not the world I wanted for her.

Tonight, twenty minutes ago, I watched the clock tick down to the polls closing on the west coast, and as soon as it hit zero, I saw the words on the screen as the networks pronounced Barack Obama the President-Elect of the United States. I watched the tears and laughter of people in Grant Park, white and black, as they watched history, REAL history being made. It wasn't just history stepping on them, squashing them under its cold boot like history has been doing since 2001. It was the history THEY made, the history that WE have made.

Now I sit here. I'm waiting for Barack Obama to come out and address the nation as the 44th president of the United States of America, and for the first time in the span of Schuyler's short life, I can say it, without hesitation and with a heart filled with anticipation and a sense of relief and rescue and possibility.

THIS is the world I want for my daughter. This one.

Busy week

Monster & Monster
Originally uploaded by Citizen Rob
On this historic day, I thought I would touch on the inevitable subject, the thing that's on everyone's mind today.

That's right. Let's talk about my upcoming public appearances.

Okay, yeah. I know.

Tomorrow I fly Dayton, Ohio to speak to some classes at the University of Dayton. I'll be giving a presentation Thursday evening, and if you live in the area, or close to the area, or in the general area of the area, I hope you'll come see me. You can watch me in my fancy pants speech-giving mode.

This coming Saturday, I'll be doing my last book signing for the hardcover edition, at a Barnes & Noble in Dallas. Schuyler will be there, signing books, and I really hope the folks I've met and talked to in the Dallas area will come by and see me.

Okay, so I'll see you in Ohio, and oh yeah, get your ass out to vote today. Unless you voted early, in which case, do with your ass as you please.



Guest Lecturer
University of Dayton
Department of Sociology, Anthropology and Social Work
Thursday, November 6, 2008
6:00 - 9:00pm
Sears Recital Hall
300 College Park Avenue (map)
Dayton, OH 45409
Meet and listen to author and blogger, Robert Rummel-Hudson, talk about Life with Schuyler. Mr. Rummel-Hudson is the author of Schuyler's Monster: A Father's Journey with his Wordless Daughter. Schuyler was diagnosed with a rare neurological impairment that prevents her from speaking. The book documents the various challenges and moments of joy that accompanied their journey. Pizza will be available at 6pm in front of the Recital Hall prior to the presentation.

Book Signing
Saturday, November 8, 2008
1:00 pm
Barnes & Noble - Prestonwood Center (map)
5301 Belt Line Road
Dallas, TX 75254

November 3, 2008

It's time.

I voted last week, as evidenced by my little "My vote counted" sticker. I joked a lot about how, when I voted for Obama in the most conservative voting county in Texas, I half expected the tornado sirens to go off, but the truth is that even here, there are a lot of Obama voters, judging from the yard signs and bumper stickers I've been seeing.

I don't think these are secret Democrats who have been tempted out of hiding. I suspect a lot of them are Republicans and Independents (like me, actually; it's been at least two election cycles since I've self-identified as a Democrat) who have seen an opportunity to do something different, before it's too late. I suspect there are a lot of people like myself who are afraid that if things keep going on the track they're going, this might be the last election where we actually choose a president rather than a local warlord. Parsing this election in terms of the fall of civilization too hyperbolic for you? Well, yeah, me too, probably, but still. As The Daily Show put it a few weeks ago, I sometimes think that Bush isn't just trying to become the worst president ever, but possibly the last.

Here's the thing, though. I have friends who are not only McCain supporters, but hard-core, right-wing, blood-red conservative Republicans. No, it's true. In fact, considering what a dick I can be about politics and religion, it's surprising how many of those friends I actually have. And I don't think they're deluded or suffering from a head injury. I think they're wrong, of course. But then, I suspect a lot of people think I'm wrong about a great many things. They stick around anyway, though, possibly for the same reason that some people watch auto racing from the safe seats in the back. What matters is that they are there. They remain my friends, and they care about their country.

You've probably heard a lot about how this is the most important election in this country since the Civil War, and that if you don't vote, the ghost of George Washington is going to show up in your bedroom late Wednesday night and poke you in the eye. I suspect that it's true, or mostly true, anyway. Well, maybe not the ghost part, as cool as that would be. But it does feel like we're at a point in our history where the high school textbooks of the future will start a new chapter.

Regardless of the outcome, regardless of your politics, and no matter how freaky you are about your position or how apathetic you might have become about the whole thing, go vote tomorrow. Go exercise maybe the one governing process the founding fathers gave you to participate in as a citizen that isn't completely fucked up now. Be a part of history, one way or the other.


Edited to add: I just removed Google Ads from my site, due to the fact that California readers were being treated to a "Yes on Prop 8" ad on my site without my approval or even my knowledge. Thanks, Google. That was a pretty vile thing to do there. We're done, you and I.

Yay to the longtime reader who pointed it out to me in email. Boo to that same reader for asking why I'm opposed to gay marriage and in favor of writing discrimination into the constitution. ("I was very, very surprised and disappointed to discover that.") I mean, come on.