St. Martin’s Griffin ISBN: 978-0-312-53880-4 ISBN-10: 0-312-53880-4 288 pages $14.95
Author appearances:
Thursday, January 8, 2009 - 7:30 pm Legacy Books, 7300 Dallas Parkway, Plano TX 75024
972-398-9888 | info@legacybooksonline.com
Friday, February 13, 2009 - 7:00 pm Book Passage, 51 Tamal Vista Blvd., Corte Madera, CA 94925 415-927-0960 | 800-999-7909
When Schuyler Rummel-Hudson was eighteen months old, a question from her pediatrician about her lack of speech set in motion a journey that continues today. When she was diagnosed with bilateral perisylvian polymicrogyria (an extremely rare neurological disorder), her parents were given a name for the monster that had been stalking them from doctor to doctor, and from despair to hope and back again.
Once they knew why Schuyler couldn’t speak, they needed to determine how to help her learn. They took on educators and society to give their beautiful daughter a voice, and in the process learned a thing or two about fearlessness, tenacity, and joy.
More than a memoir of a parent dealing with his child’s disability, Schuyler’s Monster is a tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.
Praise for Schuyler’s Monster
“A gripping explication, shot through with equal parts horror and hope, of how parenthood can turn ordinary people into passionate advocates.” - Neal Pollack, author of Alternadad
“Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal.” - Charlotte Moore, author of George & Sam
“The book is engaging and honest - I'm sure it will help many parents who are struggling to find the most loving way to help their children who have ‘issues.’” - Dana Buchman, designer, author of A Special Education: One Family's Journey Through the Maze of Learning Disabilities
“Rummel-Hudson’s memoir offers a moving account of his and wife Julie’s unrelenting efforts to give their buoyant little girl a way to communicate.” – People magazine
“Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.” – Kirkus
“…A study not only in Schuyler’s vivacious and resilient personality, but also in the redeeming power of understanding…” – Publishers Weekly
“This memoir, full of fear and rage and disappointment and acceptance and advocacy and ferocious love, offers plenty of touchstones for parents who have dealt with diagnoses that are infuriatingly wrong or frighteningly right….” – Terri Mauro, author of The Everything Parent’s Guide to Sensory Integration Disorder
“Rummel-Hudson chronicles, with disarming frankness, the experience of parenting a child no one knows how to help.” – Brain, Child
“…This story will both compel and inspire readers on their own self-journey.” – Texas Family magazine
“We all play the hand that we are dealt in life. Knowing that there are many people like Robert, Julie and Schuyler who play their difficult hand with grit, tenacity and love makes this world a much better place in which to live.” – The Citizen, Auburn, New York
The Author
Robert Rummel-Hudson has been writing online since 1995. During that time, his work has been recognized by the Diarist Awards and has been featured in the Austin Chronicle, the Irish Times, the New Haven Register, the Dallas Morning News, Wondertime Magazine and Good Housekeeping, as well as on American Public Radio’s “Weekend America.”
Robert and his family currently live in Plano, Texas, where Schuyler attends a special class for children who use Augmentative Alternative Communication devices. Much of her days are now spent in mainstream classes with neurotypical children her age.
God knows we've met plenty of kids fighting those big monsters. Kids in wheelchairs. Kids with CP whose bodies betray them when they attempt the simplest movements. Kids with autism for whom the world in which they live bears only a passing resemblance to the one that the rest of us occupy. Kids fighting battles with their bodies just to be able to eat, or to live without crippling infections. We've met kids with big, daunting, obvious monsters, and in her own way, trying to communicate the simplest concepts and so often finding frustration, Schuyler has lived with a sizable monster herself.
When she received her diagnosis five and a half years ago, we met polymicrogyria, her big monster. That day, we learned to fear the even bigger one that might be waiting for her. I think we knew on some instinctual level that Schuyler was not mentally retarded, so grand mal seizures were the ugliest monster we feared. There was a ninety percent chance they would develop, we were told, and in rare cases (but how rare can they be, really, when they are a subset of but a thousand cases in the world), those seizures could be lethal monsters.
Big monsters are bad, that's for certain. But the little monsters, the ones so subtle that you're not even sure they're there, they bring their own special anxiety.
It's been a strange week. Nothing really changed, just the falling together of enough puzzle pieces from different sources and perspectives to reveal what seem likely to be tiny monster footprints. Looking back, we realized that if Schuyler really has been having absence seizures, it probably began this summer. But it's hard to say for sure. It's hard to say whether she's having short spells at school where she loses her focus because she's having tiny seizures, or just because her father's disinterest in school turned out to be genetic. It's hard to say with absolute certainty that Schuyler's little fade-outs at home with us are a product of tiny electrical storms in her head, or just the inevitability of her growing boredom where her parents are concerned.
Julie and I have been watching her all week. Just watching, waiting for a glimpse of her tiny maybe-monster. Schuyler was home sick for a couple of days, and Julie found herself unable to stop staring, waiting. Schuyler noticed, too. "What, Mama?" she said irritably. If what I'm reading and hearing about absence seizures is true, she has no idea she's having them. IF she's having them.
Tiny maybe-monsters aren't much fun. They are like the world's most challenging Whack-A-Mole game, where not only can you not hit them, but they move so quickly that you're not even sure they are there.
Tomorrow we see a doctor. Not a specialist, not yet, but just getting Schuyler started with a new general practitioner. Mine, actually. She knows me, and she's read the book and has at least a basic understanding of Schuyler's bigger monster, which is more than any other doctor of hers has ever had at the first appointment. Most of all, I trust her, completely. From there we'll get a neurology referral, and then start down this road.
It might be that there is no tiny monster, and that Schuyler continues to dwell in that sweet spot, the hundred or so polymicrogyrians of the world who live free of seizures. I live between two mental states right now, the one that clings to that ten percent hope and then the one that's ready to take on this next phase. More than anything else right now, we simply want to know which path we're taking. It's been a long time since we were in this answer-seeking limbo. I'd forgotten how much I hate it.
Yesterday I was driving with Schuyler, and I was listening to an opera because I am just that much fun of a father. The opera was in English, and the characters were mentioning "war" frequently. (Again, fun dad.) After asking me what the music was about, Schuyler hit me with one of those Big Questions that kids drop on us like, well, bombs.
"Daddy," she asked, "what is war?"
I gave her the best answer I could think of. I left out the part where she's fighting a war and doesn't even know it.
In retrospect, it seems almost ridiculous that I, of all people, would allow Schuyler's monster to sneak up on me.
We've been dealing with the issue of Schuyler having focus problems in school ever since the semester began. It's been something we've seen at home as well, where she will phase out and simply not seem to hear us when we say her name. It can be annoying, like the "selective hearing" that most little kids seem to get at some point in their lives, but after a few rocky weeks in school, she figured out her rhythm and started to perform. Her last grade report was all A's. The focus issues continued to come up, but they didn't seem to be seriously affecting her class work, so they became B-List worries.
It wasn't until one of her teachers actually described her moments of scattered focus that something became clear, something that should have been clear from the start, but wasn't. After Julie and I compared notes all day and after going back and doing more reading, and especially after seeing video that it never occurred to me would be available online, we saw it. We're beginning the process of confirming this medically, but today, we think we saw it.
Julie and I now believe that for at least the past six months, Schuyler has probably been experiencing absence seizures.
I'm trying not to beat myself up about this too much. Absence seizures are subtle, after all, and they manifest themselves in different ways, depending on the person. They are also particularly hard to detect in non-verbal subjects, for whom a sudden lapse in conversation is obviously not much of a tell. Watch this video, of a little girl having absence seizures. This video is significant because her absence seizures are almost identical to what we see in Schuyler's little zone-out episodes, particularly in the tiny little movements of her jaw:
As you watch it, ask yourself if you would even notice anything wrong if you didn't know what you were looking for. Absence seizures can be hard to catch even with a healthy, jabbering little kid.
And yet, we should have known better. Ninety percent of polymicrogyria patients develop seizures, most of them between the ages of six and ten. Schuyler turns nine in a few weeks. It's been comforting to think that she was beating the odds again, and it made for a swell line in the speeches I've been giving, but the reality of Schuyler's situation was always there, right in front of our faces. Julie has been preparing emotionally for this day, and so her feelings on the matter are somewhat subdued. Mine you can probably guess.
I suppose that for all my talk, I'd allowed myself to get a little complacent, and a little too hopeful. There's nothing wrong with hope, except when it gets in the way of facing the monster and outsmarting it. Hope can be a positive or a negative force depending on what you do with it, really. Hoping that Schuyler will one day speak is a good thing, for example, even if it's only a remote possibility. But what if that hope led us to put all our efforts into getting her to talk, instead of teaching her sign language and giving her the Big Box of Words? It's the same with the seizures, I suppose, except of course that until the day comes that she has one, there's really nothing to do but be vigilant and prepared to spring into action.
Now that the day may be at hand, the next step is to get Schuyler to a neurologist or an epilepsy specialist and find out if she's actually having them. If she is, then we play it by ear. Seizure meds present complications for PMG patients that can make them an unattractive choice for non-debilitating cases. We'd monitor her seizures, explore whatever medical options were deemed appropriate, and continue to do what we're doing now. We'd work to incorporate her monster into her life, as normal a life as we can give her.
The monster already has a place at the table. That doesn't change. It still doesn't get to eat the fucking table.
While most people with PMG progress from absence seizures to more serious and sometimes life-threatening forms, it is entirely possible that Schuyler could develop something called absence epilepsy, in which her seizures never progress beyond what she may be experiencing now. Even if she develops more serious seizures, the fact that they've developed this slowly and incrementally might mean they won't be life-threatening or an excessive obstacle in her life. She might not be able to get a driver's license, and a career as a fighter pilot might be unrealistic. I suspect she'd be able to live with that.
This has been our fear all along. For five years, the specter of seizures has haunted us. And while this might sound bogus to non-parents, those of you with kids will know exactly what I mean when I say that Julie and I have come to trust our instincts with Schuyler's condition and what it means for her, and we trust it completely. When Yale diagnosed her with PDD-NOS, an autism spectrum disorder, it was our instinctual knowledge of Schuyler and our intuition that told us it was wrong. When we were fighting for her Big Box of Words, we knew on a gut level that she would excel on a speech device.
I've learned to listen to my heart where Schuyler is concerned, and while we won't stop until we have a doctor's evidence, my heart is telling me to get ready. My heart tells me a storm is coming.
In the epilogue of Schuyler's Monster, I address the possibility that Schuyler could one day develop seizures.
The future for Schuyler is uncertain. Our most dreaded fear, the seizures that statistically seem almost certain to come, have yet to manifest. It hangs over us like the sword of Damocles, but sometimes I forget that those head storms might be waiting to ambush her at all. Then I remember and the fear settles back in. That black lump reappears in my chest when I imagine her having grand mal seizures. When I can step away from my fear, however, I also know that even if they do come, she’ll endure and adapt and keep going, powered by an unstoppable will that she possesses and I do not.
If that day is here, it remains true that Schuyler is ready in ways that I'm not, and never will be. But when I lose my way, as I often do, it's still Schuyler who helps me find me way. She's shown me how to do this all along, and I suspect that's not going to change.
As much as I'd like to make it mine, it's still her monster, after all. And she's got its number.
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.
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.
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.
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
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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.
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 . . ."
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?
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.
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 972.980.0853
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.
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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.
Sometimes, even in the midst of our fun, I catch a moment on camera that I don't even really notice until I'm looking at the photos later. For just a second, the camera catches Schuyler in what appears to be a moment of melancholy, and for that instant, I wonder if she and I share some of the sadness, even though I try to take it away from her and make it all my own.
If she does feel any of that sadness (and sometimes I think, "How could she not?"), it's fleeting. In a lot of ways we are the same, she and I. We both feel sadness sometimes, and we both internalize it almost completely.
But she deals with it better, I think, puts it away faster and buries it deeper, smothers it with her love without limits, her unconditional love, her love without fear. In that way, Schuyler is free. It's one of the many things she still has to teach me.
My beloved monster and me We go everywhere together Wearing a raincoat that has four sleeves Gets us through all kinds of weather
She will always be the only thing That comes between me and the awful sting That comes from living in a world that's so damn mean -- Eels
Plano Profile, "Author Robert Rummel-Hudson moves his family to Plano for his special-needs daughter" by Britney Porter
"Schuyler is a princess whose story is unlike most, and unlike most fairy tales, the monster in her story is one she cannot see or touch or even run away from. It is Bilateral Perisylvian Polymicrogyria (BPP), a rare neurological disorder that affects her speech, and after five years of doctors visits and one alarming parent-teacher conference at a school in Austin, Robert Rummel-Hudson and his wife Julie moved to Plano to try to slay the beast.
It started innocently enough. Schuyler came home from school with a little sticker on her device. That's not unusual; it usually has about half a dozen or so stickers on its case at any given time. This one was a little different, however, and it gave us pause.
It was an angel.
We didn't get too worked up about it, partly because we try not to be THOSE earnest, humorless Whole Foods liberals. I'm sure that whoever gave it to her didn't even think about it, much less set out to somehow evangelize to our daughter. Also, Schuyler thought it was a fairy anyway, so we even got to dodge the explanation.
It did start a larger discussion with Schuyler, though, about religion and what to say to anyone who decides to take it upon themselves to save our kid's immortal soul. It's happened in front of us a few times, after all, and so it's only logical to expect it to happen when she's at school or otherwise away from us.
Here's the thing. I don't care if Schuyler learns about or even buys into a belief system other than ours. In fact, Julie's no-bullshit Atheism conflicts pretty strongly with my own metaphor-laden Agnosticism. (And please, I beg of you, before you start asking what's the difference or making snotty little remarks about how they are basically the same, please do me and yourself a favor and go read up. Seriously. Your hungry brain will thank you.) We make it work just fine because we don't need to have a monolithic belief system in our home. We intend to make sure that Schuyler gets a good, relatively balanced overview of the belief systems of the world.
But not yet. Not now. Schuyler isn't ready. I know there are people out there who took their eight-year-olds to see The Passion of the Christ (wackadoos), and plenty of parents send their young kids to Sunday school. But here's the thing about that. These are parents who have chosen to raise their kids within their own belief system, with the intention of their kids adopting that belief system for themselves. And that's great for them. I have no problem with that.
I guess in a sense, by raising Schuyler in what is technically an Agnostic environment, I'm kind of doing the same thing, in my own way. But it is the absence of Big-F-Faith and restrictive doctrine that will give her paths of her own choosing down the road. Julie wants to expose Schuyler to other religions as well. (Sometimes I think Julie is sort of a crappy Atheist, honestly.) When Schuyler is ready, we'll open up a whole world for her. It sounds like fun to me.
But not now. Schuyler is of an age, or perhaps more importantly of a stage of development, in which she still takes things at face value. Does she understand the difference between Belief and Fact? I don't know, but I don't really think so. Maybe soon, but for now, she's still very susceptible to suggestion. It's tricky, but for now, this is the right thing to do for her. We choose to delay that conversation a little longer, rather than confuse her now, which is exactly what we would do.
We'll have that conversation with her one day, and probably sooner than later, but it'll happen when we think she's ready. So for the time being, if anyone tries to talk to her about God or church or Jesus (sadly, probably the only red flag words that she really needs to beware of in Plano, Texas), she knows to simply say "No, thank you." That's how it's going to be for now. She knows how to say no to drugs and Jesus.
Her one dalliance in the world of religion? She has chosen to be the Devil for Halloween. Well, the Chicky Devil, anyway. That ought to raise a few eyebrows. Not to worry, though. Lest anyone see fit to try to save her little soul, she'll be protected by a 6'2" chicken, plus whatever Julie comes up with. (She's working on a bat costume, although we'll see if her ambition lasts all the way through the final stages of production.)
I don't care how devout you are. Being chided by a giant chicken won't be fun. Don't try me.
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 Dayton, OH 45409
FIGHTING MONSTERS WITH RUBBER SWORDS — Robert Rummel-Hudson has a daughter who hears and understands everything but cannot speak. He has faced the challenges of finding a good education for his daughter and a supportive community, as well as the challenge of raising a special needs child. Rummel-Hudson will discuss those challenges and the value of a supportive community at 6:30 p.m. Thursday, Nov. 6, in the Sears Recital Hall in the Jesse Philips Humanities Center. It is free and open to the public. Rummel-Hudson wrote Schuyler's Monster: A Father's Journey with His Wordless Daughter, about his daughter.
"Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal," said Charlotte Moore, author of George & Sam, a book about raising two autistic children. UD's Center for Social Concern, College of Arts and Sciences, criminal justice studies and School of Education and Allied Professions are sponsoring the event.
For more information, contact Director of UD Criminal Justice Studies program Art Jipson at 937-229-2153.
Schuyler received her first actual report card today. While she does have a modified curriculum due to her speech output device, this report comes from her mainstream third grade teacher and reflects the mainstream curriculum classwork she's doing.
This is the same little girl about whom some therapists and teachers in her previous schools gently suggested that mainstreaming might not even be possible.
INTEGRATED CURRICULUM (Science, social studies, health): 96
CUMULATIVE AVERAGE: 89
An 89. That's either a B+ or an A, depending on your school's scoring system.
Well, everyone likes being right sometimes. Where Schuyler is concerned, every time we're proven right for believing she was capable of doing great things if only given the right educational tools and setting, I feel ten feet tall.
"I'm also troubled by, not what Senator McCain says, but what members of the party say. And it is permitted to be said such things as, 'Well, you know that Mr. Obama is a Muslim.' Well, the correct answer is, he is not a Muslim, he's a Christian. He's always been a Christian. But the really right answer is, what if he is? Is there something wrong with being a Muslim in this country? The answer's no, that's not America. Is there something wrong with some seven-year-old Muslim-American kid believing that he or she could be president? Yet, I have heard senior members of my own party drop the suggestion, 'He's a Muslim and he might be associated with terrorists.' This is not the way we should be doing it in America.
"I feel strongly about this particular point because of a picture I saw in a magazine. It was a photo essay about troops who are serving in Iraq and Afghanistan. And one picture at the tail end of this photo essay was of a mother in Arlington Cemetery, and she had her head on the headstone of her son's grave. And as the picture focused in, you could see the writing on the headstone. And it gave his awards--Purple Heart, Bronze Star--showed that he died in Iraq, gave his date of birth, date of death. He was 20 years old. And then, at the very top of the headstone, it didn't have a Christian cross, it didn't have the Star of David, it had crescent and a star of the Islamic faith. And his name was Kareem Rashad Sultan Khan, and he was an American. He was born in New Jersey. He was 14 years old at the time of 9/11, and he waited until he can go serve his country, and he gave his life."
Ever since I got back from Nashville, and even shortly before I got there, something has been on my mind, repeating itself like a mantra.
This isn't how it's supposed to be.
When I look at this book I've written, when I see how well it has done and how many people have gotten something from it, when I speak at festivals and conferences and bookstores about it, when I drive the ridiculous car it helped to buy and when I meet writers I admire because of it, when we get to put money away for Schuyler's future and rest a little bit easier, when all these good things happen to me because of this book, it still doesn't change what the book is, or why I wrote it, or what it means that it was ever a story for me to tell at all.
I look at the cover of that book and I see that innocent little girl broken by a bitter god, and for all the great things that have sprung from the book, it nevertheless is still true.
This isn't how it's supposed to be.
I have new friends, mostly because of the book. I have old friends, many of whom have disappeared, some of them also because of the book, others for reasons known only to themselves. I have a new town which isn't me but isn't bad. I'm far from people who mean a great deal to me, but I'm in the place a need to be for Schuyler, and I'm not just okay with that, I'm grateful. Very grateful that such a school and such teachers were here waiting for Schuyler.
But still. This isn't how it's supposed to be.
Most of all, I look at Schuyler. And I know this isn't the way her life was supposed to work out.
We go to parent/teacher conferences like the one we attended earlier today. We spend time just trying to determine how exactly Schuyler will even be able to take the standardized tests that her academic future depends on, tests designed to ensure a certain amount of conformity amongst kids in whose world Schuyler will never entirely exist.
She works so hard, and she succeeds a lot, but she still might not make it, she might not reach the arbitrary standards set by our educational system. Schuyler's life story remains mostly unwritten, and mine is largely written but not in the direction I would have ever chosen. And she's lucky, and I'm lucky, and I know that. I'm a different, better person because of Schuyler and what we've all been through with her, and I don't want to be the person I was before. I don't much care for him, either.
But sometimes, when the nights are unusually quiet like tonight, and when I allow myself to imagine the world the way I thought it could have been, Schuyler's world, the way it should have been, the way she deserves for it to have been, I can't escape the thought.
This isn't how it's supposed to be. And I'm sorry, but sometimes it pisses me off.
