Showing posts with label the book. Show all posts
Showing posts with label the book. Show all posts

August 27, 2018

Uncharted: An Exploration of AAC, Advocacy and Agency

October 11, 2018
Uncharted: An Exploration of AAC, Advocacy and Agency
Featured speaker, with Schuyler Hudson
Bridgeway Academy
2500 Medary Ave, Columbus, Ohio 43202

Please RSVP to Janelle Maur at to let us know if you will be attending. $5/person and $20 per family maximum. CASH ONLY at the the door. 

Bridgeway Academy welcomes Robert Rummel-Hudson and his 18-year-old daughter Schuyler for a presentation and discussion about advocacy and agency for users of AAC (Augmentative and Alternative Communication).

Robert Rummel-Hudson is an author and advocate based in Plano, Texas.

His 2008 memoir, Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin’s Press), tells the story of raising a little girl with a disability and learning to become the father she needs.

Robert is joined by his daughter Schuyler, a recent high school graduate who uses AAC and participates in Project SEARCH, an employment internship with Baylor Scott & White Hospital in Plano, Texas. In July, she participated in a leadership workshop for AAC users at the ISAAC Conference in Australia. 

For the past several years, Schuyler has joined her father in his presentations, giving her own perspective as a young adult with a disability discovering her own path to agency and independence. Together they examine Schuyler’s journey through public school, implementation of her AAC technology, finding their authentic family, and the larger issues surrounding employment opportunity, social integration and building a truly inclusive society.

May 6, 2018

The Care and Feeding of Monsters

I recently had the surreal but entirely positive experience of revisiting my book on the occasion of its release, ten years after publication, in audiobook form. I began listening as a kind of quality check, bracing myself for the voice actor to introduce “Shooler’s Monster”. (He didn’t; he was actually a fantastic actor, and I couldn’t be more pleased that he was the one who got to spend nine hours in a recording booth instead of me. We were all spared my stuttering, monotone twang. You’re welcome.) I began listening to the first chapter, and then, like a drunk who blacks out and then wakes up the next day pantsless in the park, suddenly I found I’d listened to the whole thing.

I stayed for the entire book, not because it is such a brilliant work of wordsmithery, but rather because I hadn’t actually read the whole thing from beginning to end in, well, probably ten years. Once I stepped into the prologue, back in New Haven with baby Schuyler and that beautiful, horrible afternoon in a late New England summer, all my half-forgotten anxieties and heartbreaks and WTF moments became real to me all over again.

I found myself back in the summer of 2003, when my baby girl was an internally focused and entirely wordless enigma, and the future consisted of a rolling mist, opaque but presumedly fully of hungry, hateful monsters. Schuyler was imperiled by that future, and I was too dumb and too scared to do anyway thing more than step into it with her. 2003 was the summer of “Well, shit, here goes nothing.”

Monsters. Their nature has changed over the years, although they are as omnipresent as ever. I have a small confession to make about the title of my book. Some people hated it, and others found it to be an elegant metaphor, but either way, it wasn’t my brilliant idea, not directly. I’d been referring to “Schuyler’s monster” on my blog for some time before the book was written, but the term itself originally came from Schuyler.

I’ve said many times that the only two things I know for sure I’ll always give Schuyler are love and the truth, and that was true from the very beginning. After her diagnosis, she knew something was wrong, she understood that something big had changed. When I tried to explain it to her on a level that would make some sense to her (as if it made any to me, then or now), her eyes lit up, and she asked a question, with her combination of primitive sign language, even more primitive verbal language, and her omnipresent miming as if her life was an unending game of charades,

Was it a tiny little monster living in her head?

And I thought, You know what? It kind of is. Let’s go with that.

At the time immediately after Schuyler’s diagnosis, in my state of numbed panic and heartbreak, the idea of what a little monster inside her beautiful but inscrutable brain might be doing to her was simple. It was hurting her. It was trampling her future and making its plans to whip up lightning storms inside her sweet little head. It might have even been preparing to extinguish her life altogether. No one knew, and because I’m her father and thus needed to be prepared, I believed the worst case scenarios and stood by, ready to do what I could to protect her from that monster and those storms. I was aware then as I am now, of course, that what I could do to save her was not a goddamn thing.

It’s been almost fifteen years since that awful summer, the one that broke me but not Schuyler. The life she lives now is not the one we were warned to prepare ourselves for. Her brain was badly malformed, maybe as much as three quarters of it affected by her polymicrogyria, but it nevertheless reformed its lines and rewired its functions and is doing its brainly job with style and ingenuity. She had feeding difficulties, but aside from maybe half a dozen terrifying choking incidents, she’s navigated the world of food with gusto, and most of those feeding issues have completely faded. She has intellectual disabilities, but she’s not a fool. She experiences and processes the world around her in her own way, but that way isn't childish or insufficient.

It’s weird and wonderful and cool, Schuyler’s brain world. And she’s right. It has a monster in it.

This monster isn't the one I feared when she was so much younger. It’s not a monster that Schuyler hates, I don’t think, not really. Her polymicrogyria, and the unique life it gives her, is hard, and it lacks navigation or instructions. But after all these years of keeping on keeping on, of finding what works and what she wants to do with the complicated and compromised life she’s been given, Schuyler lives that life always aware of her challenges but not fixated on them. At the impossible age of eighteen, she’s doing her very best, and her very best isn’t bad at all. As a matter of fact, Schuyler’s best is pretty extraordinary.

And there’s a monster there still. She seems less and less motivated to hide it than she was even a year ago, which I believe is a very positive development. She seems less interested in trying to pass for neurotypical than she was even a year ago. Perhaps she’s experienced the world of the neurotypical for long enough to know that we’re not so perfect, or more to the point so undamaged, as she might have once believed. The reality of the world has made a strong case for alternative possibilities she might not have entertained before now.

The typical world is kind of fucked up, in other words. Her atypical life might not be all that lacking after all.

If you’re not a part of the disability community, and by that I mean if you don’t have a disability yourself, or have immediate family members or professional clients with a disability, you might imagine our lives as being an ongoing season of The Disability Show all the time. And I guess on some level that’s true, in that it never goes away. There’s always a monster-shaped chair in every room, and it’s never unoccupied.

Our reality is more subtle than that, however. We don’t talk about it every day, or even most days. The older Schuyler gets, the less she worries about it. And for all that I write about Schuyler’s polymicrogyria and trying to make sense of it, I don’t think of Schuyler as the disabled kid all the time. I’m not always Disability Dad. Sometimes I’m Amateur Musician Dad now, for example; I’ve begun to learn a new instrument (the ophicleide, which is perhaps the ultimate hipster instrument, in that you’ve probably never heard of it). Schuyler helped me get it, starting a little fundraiser last fall, and now she watches me play and asks lots of questions and may in fact be the only human being in both my near and remote orbits who isn’t sick to fucking death of hearing about the goddamn ophicleide. We’re all living our lives as people, and Schuyler’s disability is a significant part of that, but it doesn’t suck up all the oxygen in the room the way it once did.

It’s not that I live in denial. But the fact is, when you know Schuyler, she’s just Schuyler, polymicrogyria and weird ways and rockstar presence and big laugh and all. When you get to know her, she becomes more.

That’s important. The world in general sees someone like Schuyler as less. It sees people like her as diminished members of society, because it doesn’t see them in their totality. People with disabilities are treated like partial people by our society because our society doesn’t know them. Much of our society doesn’t even realize they are knowable. And until those relationships become real, until students in school and adults in their workplaces and tv viewers turning on their favorite shows begin to see people like Schuyler existing and working and laughing and cursing and living messy lives right next to them, there will always be a divide. There will always be an Other. And as a society, we are absolutely shit when it comes to embracing the Other.

Schuyler’s life now is a mix of the typical and the monstered. She attended her school’s Homecoming dance last fall, with a shy young man who asked her to the dance and made her world suddenly bright with possibilities. She went to prom last week with another exceptional young man, this time one whom she invited, perhaps because she’s beginning to understand that if she wants to have the world on her terms, she’s got to spell those terms out herself. This summer we’re speaking to a gathering of polymicrogria families and then traveling to Australia so she can attend a leadership workshop for adults who use assistive speech technology. And at the end of the summer, she’ll enter into an internship at a major local hospital, where she’ll spend about nine months learning valuable job skills in a variety of different positions.

After that, Schuyler will enter the adult world in earnest. She’ll step into the foggiest of fogs, and she’ll lose the protections that school and childhood have cloaked her in. Will the world be ready for her? Is it ready for any of her peers? I sometimes wonder. The speeches I’ve been giving over the past few years have contained a lot of calls to arms where disability rights and societal change and authentic relationships with people like Schuyler are concerned, but I sometimes fear that while the faces in the audience may change, they’re still mostly members of the choir that I’m preaching to.

I want to change the world, and I fear that I can’t. It’s dawning on me now that I’m not going to be the one to do it.

It’ll be Schuyler, and people like her. And they’ll do it because it needs to be done. The rest of us need to help them build a world in which they have the opportunities the rest of us enjoy in our extreme privilege. And when we step back and watch what they do with those opportunities, all I know for certain is that our only appropriate reactions will be ones of respect, and maybe even just a touch of awe.

May 10, 2016

With Thoughts of Other, Younger Days

Today, at Support for Special Needs:
I'm not sure what to think of who I am now. I'd like to look back at that younger me and say, "Oh my god, what a dumbass. He knew nothing." But I miss him. I miss being him. He felt fear of the future, but the ticking clock didn't sound so loudly in his ear. He didn't have answers, but he had time, and there was no way he wasn't going to be a warrior from that point on. He'd written (or was in the process of writing) a book about being a confused father stumbling through some mysterious darkened places, but that was over. Schuyler's monster had been sighted and put on notice.

November 2, 2015

Another homecoming, of sorts

Today at Support for Special Needs:
It's no secret that letting go of Schuyler's chaotic, sometimes troubled but always adventurous childhood has been difficult, mostly because what lies ahead is so mysterious, and where special needs parenting is concerned, mysterious is never comforting. Every time she picks up a piece of her own advocacy, Schuyler puts down just a bit more of a deposit on the future. On her future.

August 4, 2015

A Partnership

This morning at Support for Special Needs:
You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

April 6, 2015

Schuyler and the Big Questions

Today at Support for Special Needs:
When speaking to groups where I know there are going to be a lot of people of faith present, I still talk about God. I talk about Faith and God and my own broken spirituality and what kids like Schuyler may be able to teach us about such things. I kick open the door to a conversation that isn't about convincing anyone or being convinced, either, but rather an exploration of perspectives that might just bring us all a little closer together. I'm not religious, and I'm certainly no Christian, but I don't need to be snotty about it and assume that believers won't listen to me or treat me with respect. I like those conversations. I try to draw them out with my speeches when it's appropriate.

January 26, 2015


Today at Support for Special Needs:
Schuyler is growing into an advocate for her own needs and wants, although it's not always easy for her. She gets nervous. She doubts the value of what she has to say sometimes. But at the same time, she sees how much people want to hear her perspective, and she is beginning to get a sense of what her future as an advocate might look like. She's taking the first steps into a life where the person who speaks up for Schuyler is Schuyler.
July 2008. I'd like to have that hair back, please.

March 3, 2014

Hunting Monsters at SXSW

Today at Support for Special Needs, for those attending SXSW this week and next:
If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation.

May 13, 2013

One Small Light

Today at Support for Special Needs:
If you're here, you get it. You're almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn't small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I'm right, that sounds exactly familiar. Or you might say I'm full of crap. But you're probably never going to say "Oh, that never occurred to me." Because if you're in the club, there's very little that hasn't occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.

April 8, 2013

The Future Speaks

Today at Support for Special Needs:
This technology means a lot of things to a lot of people, but the universal power it holds is simple. It means independence. It means autonomy, of expression and self-determination.

April 5, 2013

Guest Author to Discuss Saga of Raising a Child Without Words

Guest Author to Discuss Saga of Raising a Child Without Words

Robert Rummel-Hudson, author of Schuyler’s Monster, will speak April 9 at The College of Wooster

April 4, 2013

John Finn - 330-263-2145 - Email

WOOSTER, Ohio — Robert Rummel-Hudson, author of Schuyler’s Monster: A Father's Journey with his Wordless Daughter, will share his story at The College of Wooster of Tuesday, April 9. His talk, which is free and open to the public, begins at 7:30 p.m. in Gault Recital Hall of Scheide Music Center (525 E. University St.). A book signing and a dessert reception will follow the event.

Schuyler’s Monster is the story of the relationship between a precious little girl and her family, particularly her father, struggling to find the answers to a child’s silent world. The book chronicles how their relationships formed without traditional language against the expectations of a doubting world.

Schuyler was diagnosed at 18 months of age with Bilateral Perisylvian Polymicrogyria (BPP), an extremely rare neurological disorder caused by a malformation of the brain that can affect the patient’s speech and fine motor control; cause partial paralysis of the facial muscles, tongue, jaws, and throat, as well as difficulties in speaking, chewing and swallowing; and result in sudden episodes of uncontrolled electrical activity in the brain, leading to possible grand mal seizures. Schuyler communicates through an Alternative Augmentative Communication Device (AAC), which is manufactured in Wooster by Prentke Romich.

Schuyler’s disability had a profound impact on her father, who went from a sarcastic, befuddled dad to a special-needs parent. Thrust into a battle against this rare and invisible disorder, Rummel-Hudson chronicles his own depression, his past family dysfunction, and the nagging suspicion that he was not the right person for the job. In the process, he discovers a sense of purpose and responsibility, and becomes the father and advocate that Schuyler needed to help fight her monster.

Rummel-Hudson’s lecture is sponsored by Wooster’s Department of Communication, the campus chapter of the National Student Speech Language Hearing Association (NSSLHA), the Cultural Events Committee, and Cross Cultural Connections.
Additional information is available by phone (330-263-2647) or e-mail.

March 4, 2013

Traveling Companion

Today, at Support for Special Needs:
I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.

January 24, 2013

Two things. Three, if you count the chinchilla.

Two quick orders of business today.

First of all, I want to very publicly thank Dr. Janice Light from Penn State's Department of Communication Sciences and Disorders. I had the opportunity to speak to her class this morning about Schuyler and AAC and the experience of being a parent wielding a rubber sword. One of the very best things to come out of writing my book has been the opportunity to meet and speak with the young people who are heading out into the world to make a difference, to make THE difference, in the lives of people like Schuyler. They are my heroes, and it really is an honor and a privilege to share my own small insights with them.

Secondly, I'm happy to announce that I will be contributing to the new special needs blog, The 504, over at You can read my introductory post, Meet Schuyler, Monster-Slayer. (It's sort of a "Hi, this is what I'm all about" post, so it's not exactly going to be new stuff for regular readers.) I'm happy that they've started this new project, and even happier that they've invited me to be a part of it.

Okay, that's it. Oh, and here's our new chinchilla, because as you may or may not know, chinchillas are exceptionally cool. (My Instagram and Facebook feeds are mostly about chinchillas these days, in no small part because it makes me happy, imagining everyone saying "What's with all the goddamn chinchilla stuff?" I gotta be me.)

Hello, Frida.

May 14, 2012

April 16, 2012

The Island

Once again, it's time for a new post over at Support for Special Needs. I wanted to offer something up to the parents and families out there dealing with external monsters on top of the personal ones that nip at their heels without rest. I've felt badly for special needs parents of late; it seems like the world has been unusually cruel to a lot of them. And it reminded me of something I wrote in my book, a fantasy about escaping to an island.

It was an entirely wrong-headed fantasy, and I knew it back then. Even today, however, it holds some of the same appeal to me as it did years ago when I'd stand on the beach in Connecticut with Schuyler and wish that the future that I was afraid would bedevil her was on the other side of the sea. If it was just us, protected from that future and the grand rough world, I thought, we would make it just fine.

As it turns out, we did anyway.

March 5, 2012

Schuyler's Dragon

I just found out that someone bought the rights to publish Schuyler's Monster in Chinese.

How cool is that?

Schuyler has declared it "super cool". So there you go.

September 10, 2011

The Saddest Place in the World

(Chapter Five, "The Saddest Place in the World", from Schuyler's Monster: A Father's Journey with His Wordless Daughter, by Robert Rummel-Hudson. St. Martin's Press, 2008)


In October 2000, we received a visit from a friend I had made online through my journal, a writer from Ireland named Caoimhe. (That's pronounced "KWEE-vah", by the way. Well, of course! How else would you say it?) She was visiting the States to attend a conference for online writers, along with Dana and myself and a number of my favorite writers and friends. While she was in New Haven, she wanted to visit New York City and see another friend of ours, a popular online writer and personality named Nina, who was unable to attend the conference. I piled into the car with Julie, Caoimhe, and little ten-month-old Schuyler and drove down to meet Nina at the grandest, coolest, most New York location we could think of, one which would require no directions other than what we were told by our eyes and which would be certain to impress everyone.

So it was there that Schuyler and I found ourselves on a chilly October afternoon, looking up at the biggest thing in the biggest city either of us had ever experienced. As impressive as the World Trade Center could be from any direction as you approached it, it wasn't until you stood at the base of the towers looking up that you could truly appreciate the enormity and seeming impossibility of their existence. I had seen them before, during a conference and performance with my college trombone ensemble five years before, but it was still hard to be jaded. For Schuyler, not even a year old and still tooling around in her stroller, it was well and truly blowing her tiny little mind.

We found ourselves alone in the plaza. Nina hadn't shown yet, and Julie had taken Caoimhe inside on a quest for coffee. Schuyler and I played around the fountain under the giant spherical sculpture and chased birds around with her stroller, to the annoyance of cool Manhattanites and faux-cool tourists around us. We had a hot dog and played and danced, and it was on this evening that I heard for the very first time the braying, hysterical laugh that Schuyler still hasn't lost. I've heard that laugh a thousand times, but on that night, between the towers as we played and ran and lived antlike in their looming magnificence, we heard it for the first time. That's one of two things I remember vividly about that night.

While we waited for Julie, I pushed Schuyler's stroller up to the long, graceful columns of the North Tower until the bumper touched the wall. I reached down and removed her tiny gloves so she could reach out and touch the surface with her bare hands. She stared up at the long, sleek metal pillars as they fanned out into long vertical lines that blurred together long before reaching their end at the top. The tower seemed to sway gently beside its twin in the sky, an optical illusion created by the clouds moving overhead. We then ran across the plaza, scattering pigeons as we went, until we arrived breathless at the South Tower. As I bent to catch my breath, Schuyler leaned forward to touch the cool, smooth surface, her eyes again straining overhead.

That is the other moment of that day I'll remember. Schuyler's hands, impossibly small and delicate, touching the towers, so improbably big and forever.

Julie was working at a bookstore in Waterbury, Connecticut, when the first plane hit. She was scheduled to lead a tour group of elementary school kids through the store, and by the time their bus rolled up, she was waiting for them, pulling the teachers aside quietly to inform them that something horrible was going on in the city, but no one seemed to know exactly what it was just yet. The tour was given and the kids departed, and for the rest of the day, Julie and her co-workers caught scraps of news from customers and from a radio in the back receiving area of the store. It wasn't until she and her friends walked to Chili's after work that they finally saw the images for the first time. They drank beers and shook their heads as they viewed the explosions and the collapsing floors and the clouds of rolling dust, over and over again, with no context and out of sequence. Julie sat silently, watching a carnival of unimaginable imagery playing out on a soundless television in the noisy bar of an unremarkable chain restaurant, a banal American Everyplace intruded upon by Apocalypse.

That morning, I was sitting in a AAA office in New Haven, renewing my car insurance, when one of the agents announced to the office that his wife had just called him and told him a small airplane had just flown into the side of one of the World Trade Center towers. As my agent put together my policy, the others joked about what kind of dumbass pilot doesn't notice the twin towers in front of him. A few minutes later, the same agent announced that his wife heard on television that it wasn't a small plane after all, but an airliner. Shortly after, his cell phone chirped again. By now we were listening to him for more news, and so we all heard him say loudly, "Holy fuck."

United Flight 175 had crashed into the second tower.

By the time I had arrived at my office on the mental ward, mayhem had landed with both feet. I turned the key and stepped onto a ward buzzing with activity. Yale-New Haven Hospital was close enough to New York to see a large number of the thousands of injured people expected to head our way after the New York hospitals were inundated. Beds were being wheeled into empty rooms. Voluntary patients were being discharged, standing at the nurses' station with their belongings in hand, waiting to be sent out into a world that was suddenly scaring the shit out of each and every one of them. And us.

I went to my office and tried to get to the CNN Web site, but nothing was working. The servers were swamped. The only thing I could get to was a discussion board I sometimes frequented, so I reloaded it over and over, watching as people posted what they knew, and what they didn't know. It was a crazy stream of panic, a swirling mix of unbelievable rumor and inconceivable fact. One plane, two planes, maybe more. An explosion at the Pentagon caused by perhaps a helicopter, a crash on a Washington, D.C. freeway, a fire at the White House, an explosion at the Supreme Court building. NBC Nightly News reporting a car bomb outside the State Department. Some group called the Democratic Front of Palestinian Liberation had claimed responsibility. All air traffic was shut down. A third explosion at the World Trade Center, causing the top of one of the towers to collapse down to the thirtieth floor. No, the whole tower. Gone. One person wrote from overseas, "The republic is falling."

I didn't read that last part until later. I had left my office and walked down to the patient area for a moment to take it all in. As I stood there, a low moan rose from the patients and staff gathered around a television. I rushed over in time to see the south tower folding into the roiling cloud of dust. When the north tower collapsed twenty minutes later, the sight was greeted with silence. We were already adjusting to a world in which such things happened.

The nurse standing beside me shook her head. "We're not going to have any patients from this," she said. "Not a goddamned one." By the end of the day, the voluntary patients would begin returning and the extra beds would go back into storage.

When I picked up Schuyler at her day care, she was surprised by the long, suffocating hug I gave her. When we got home, we all watched television in silence. She was quickly bored by the solemn talking heads and played quietly in her room.

Julie and I stayed up late that night, listening to Peter Jennings on an ABC News radio feed. I couldn't stop thinking about all the people who didn't come home to their families, the ones who weren't lying awake in bed right now. Citizens of the world and children of God, they were out there in that horrific place. They didn't hug their kids that night. They lay in rubble or in the remnants of an airplane fuselage. No one knew how many. No one knew much of anything, we were bereft of information but floating in our fear and our anger.

"I'm scared," Julie finally said with a crack in her voice. "How the hell does something like this happen here?" Then again, more quietly, "I'm so scared."

Julie finally fell into an uneasy sleep. I got up and crept into Schuyler's room to kiss her slumbering head good night. I paused for a moment and then scooped her up and brought her back to bed with me.

I kept telling myself, "That's it, I don't want to hear any more about this," only to turn on the radio and listen to the endless analysis that had been playing nonstop for a week after the attack. We couldn't turn away. Our need to understand what had happened outweighed our desire for our hearts to stop breaking and rebreaking every time we heard more stories. We watched the news on television almost full-time now. Unavoidably, Schuyler watched the images as well, but without understanding. She saw an exploding airplane and was simply dazzled by the fireball, reacting with her curious half smile and a reaching hand. She touched the screen as it lit up, and I resisted the urge to pull her hand away as if there were a poisonous snake before her. I figured she had time enough to be afraid later. She had the rest of her life to live in this broken world.

On our way home from running errands, I found myself asking, "Do you want to go see it?"

"Yeah, I do," said Julie quietly. "I need to see this." Without a further word, I turned onto the Merritt Parkway and headed to New York. It had been ten days since the attack.

Entering the city was easy, much easier than I thought it would be. It wasn't until we were traveling down the Westside Highway that we started to notice a change. Passing the aircraft carrier Intrepid museum, we saw throngs of people congregating along three long walls running down the sidewalk. Paper covered the walls; there were hundreds of missing persons posters, for blocks. Julie didn't start to cry until we saw them. Police were everywhere, along with emergency and military vehicles. Fat military helicopters patrolled the skies.

The farther we headed south, the harder it became to ignore the hole in the sky.

When we reached Canal Street and could go no farther by car, we parked on a side street, pausing to change Schuyler's diaper. As we were sitting there, a pair of fire trucks raced up and stopped right beside us. Giant flags hung from their ladders. Firemen stepped out in their full gear, and suddenly we felt as if we were in the presence of celebrities. These guys were the biggest heroes in America, but to us they just looked exhausted and sour. We asked if they needed us to move our car.

"Nah, you're fine," one of them replied in flat tones. They were there for regular firefighting duties, but it was hard to imagine they weren't thinking about it.

About "it." It. One word to encompass the entire event and the whole place, this saddest place in all the world. Thinking about It, looking at It, smelling It. This It was the biggest It in the world.

We walked, pushing Schuyler ahead of us in her stroller. I didn't know the city well enough to know exactly where the towers had stood, but you could get a fairly good idea from the looks people on the street were giving in furtive glances to the sky. They were still looking for them, a week later.

As we got closer and the wind shifted, we were hit by the thing I had feared the most. It's impossible to describe that smell. Hours later, back in New Haven, I sat up late trying to describe the scene on my blog, and I realized with a start that I could still smell it on my clothes and in my hair.

On the streets of Manhattan, there was no escaping it. We turned down a corner and suddenly it was all around us; one moment it was faint, the next it was the whole world, a world of nothing but that smell. It was a burnt smell, warm like an animal, and sickly sweet. It was the smell of the most awful things in the world. It filled me with panic, and my first glimmer of understanding.

In the midst of it all, Schuyler was oblivious. She was happy to be outside, to watch the people and the lights and the near constant flow of emergency vehicles going past, the only ones on the streets this close to the site. Schuyler was fascinated by the stillness that had suddenly replaced New York chaos, and she saw the sky ahead of us. The way to the site was obvious. There was a great light streaming up from someplace nearby, up into the hole in the sky. Light, and smoke.

There were others on foot, mostly local residents, as far as I could tell. They walked slowly, aimlessly, like phantoms in a place already swirling with too many ghosts.

When we left New Haven, we hadn't discussed the wisdom of bringing Schuyler to this place. I know that must seem pretty irresponsible now. Aside from anything else, the air we were breathing couldn't have been good for any of us. At the time, however, all I knew was that we were a family, an American family, and while the world would go and get complicated soon enough, right then it was simply the place we needed to be, the place that a short year before had become a cherished memory and was now smashed to ruin. I didn't know if any of us belonged there, but if we did, we all did.

It wasn't until we started to meet with crowds of people that I began to get a better understanding of why Schuyler needed to be there. People stopped to admire her, a great many of them, and she dutifully and with great cheer delivered her standard "cute baby who never cries or shits or does a thing in the world wrong" routine. She had no words, of course; she was almost two years old, but small for her age. No one seemed to expect her to speak, certainly not in this place where words were too small.

The next set of police lines marked the edge of where we were allowed to go on foot. Beyond these, only residents and rescue workers were allowed. Periodically, one of the cops moved a barricade long enough for a big truck to roll through, its flatbed trailer piled with sadly recognizable twisted metal. Schuyler and I had touched that metal the year before, although the base of the towers where we'd laid our hands against the cold surface wouldn't see the light of day for weeks or even months.

It was here that Julie hesitated, perhaps sensing the horrible It that lay just out of view. She was more quiet than I'd ever seen her. As I stood waiting for her, I felt a tug on my jeans. I looked down to see Schuyler smiling up at me. I bent down to her level.

"How are you doing, monkey?" I asked her. She reached out to hug me, which she'd been doing a great deal lately. The gesture carried all the meaning in the world to me, although probably no more to her than "Thanks for bringing me here instead of another boring night at home."

A policeman walked up to us as I held Schuyler. His face looked drawn.

"It breaks your heart, don't it?" he said. "I've got two kids at home, and..." He stopped abruptly in the midst of miming a hug, unable to continue. He looked back down the street at the lights and the smoke and shook his head. I told him about Schuyler's previous visit to the World Trade Center and how she touched the towers. As I spoke, another truck rolled by, carrying the huge, twisted steel beams. Some of them were actually flattened in spots. They looked like rubber bands.

"It must break your heart every time you see that," I said to him. "Every time," he replied quietly. We told him how proud we were of him and his fellow officers, but his thanks was muted; he was somewhere else in his heart, somewhere a few blocks away.

Beyond the trucks shone the lights. Bright lights, and cranes, and slowly boiling smoke tumbling lazily from what lay beyond. We'd reached the corner of Greenwich and Duane, and the crowd of people was bigger. Before I could see past them, I saw them taking photographs, and I saw their ashen faces. I looked down the street, and for a moment, my eyes weren't grasping what they were seeing.

At first I thought I was seeing tall, darkened buildings, but the smoke poured out of them, slowly and persistently. Something else was wrong, too. The lines of these buildings were wrong. There were no straight lines, just lumps. When I looked closer and saw the jagged beams sticking out, I realized what I was seeing. Julie had already figured it out; she turned away, finally giving in to her tears. Not delicate tears, either, but great shuddering sobs. She walked away so Schuyler wouldn't see.

"Oh. Oh. Oh." I said it over and over again, unable to stop or say anything else. I was looking at two piles, the farther one slightly higher than the other. They were impossibly big, rivaling the buildings around them. I'd seen photos of how they looked during the day, but at night they were simply hulking black forms, horrible for what you couldn't see. It seemed impossible that such a thing could ever be removed, that the bodies and the smell and the smoke, this mountain of steel and glass and blood could ever be swept clean. It seemed as unmovable and permanent as the towers had seemed the year before.

Men in hard hats walked away from the scene, their grimy faces unreadable.

A female police office walked up to us, bending down to look at Schuyler, who was thrilled to have someone new to flirt with, having become clearly annoyed with her weepy parents who were sucking the joy out of this adventure.

"Well, hello there!" said the officer. "Look at that smile! You are just like sunshine to me right now!" She reached out and touched Schuyler, who responded with her wheezy, goony laugh, the one we'd first heard here a year before. The officer smiled, but tears were forming in her eyes, big ones. She didn't even wipe them away, she just played with Schuyler and let them fall. When she said goodbye and Schuyler reached out to hug her, the officer closed her eyes and gave herself over to the embrace.

I was suddenly glad we'd brought her with us. There wasn't a thing in the world I could do to make this any better, but Schuyler could. She was sunshine.

We left after that, walking away from the city's smoking wound. I turned a few times to look at it again. Julie did not.

"America when will you be angelic?" wrote Allen Ginsberg. I think about the people who died all those years ago, those faces on desperate, hand-lettered posters and ethereal voices crackling over cell phones. I think about all those souls, all those young lovers and sad lonely people, the greedy and the generous, the pragmatists and dreamers and gentle mothers and rowdy fathers. They were just like me, and probably like you, too. They weren't angelic. None of us is.

Even as I write that, however, I know it's not true. I do know an angel. I watched her bless doomed towers with tiny hands and grant absolution to police officers whose hearts were breaking. Schuyler's an angel and also a bit of a devil, a fragile flower who speaks in a howl. She remains, now as she was then, the reason I give a damn.

February 11, 2011


Both this blog and my book have made it to the finals of the Readers' Choice Awards. It would be extra super swell if you'd go vote. You can do so once a day, every day through March 8. The winners will be announced on March 15.

Thank you kindly for your support, yo.

November 20, 2010

Magic trick

Sad day at Legacy Books
Originally uploaded by Citizen Rob
Earlier this evening, we visited a new independent bookstore in the area. Well, it's technically new, anyway; A Real Bookstore opened this week following the closing of my beloved Legacy Books a few months ago. Same people, slightly different concept, and I wish them well. The new store isn't quite as fancy or unique as the old, but I think it has at least a chance of surviving, so there's that.

Anyway, as Julie and Schuyler went to the (very nice) kids' department, I briefly stopped in the Biography section to see if they had my book. (Because I am a total narcissist, sure. I'd like to see YOU walk into a new bookstore and not check to see if they carried your book. Judgey.) I discovered that not only did they have it, but it was a copy left over from my store appearance back in 2009, complete with autographs from me (in boring black ink) and Schuyler (in pink, with little flowers). If that sounds like fun to you, well, now you know where you can find it.

I rejoined the fam and we explored the store for a while. As we moved back towards the front of the store, I turned to Schuyler and said, "Do you want to see if they've got your book?" She was all about the idea, budding little narcissist that she is. When we found the book, I pulled it out and held it over her head.

"Want to see a magic trick?" I asked. "I'm going to sign this book with my BRAIN!" I closed my eyes, put the book to my head and made a funny alien sound for a few seconds.

"Do you want to try it?" I asked. She nodded excitedly, and I put the book to her forehead. She closed her eyes and made some appropriately weird sounds. "Sign it in pink," I said "And draw some flowers!"

When I opened the book and turned to the title page, I have to say, she was muchly impressed. I suspect she might have seen through my shenanigans, but if so, she kept it to herself. Sometimes Schuyler plays along when she knows better. She understands that there are different kinds of magic in the world, I guess.

October 12, 2010

Alabama Song

Originally uploaded by Citizen Rob
I am happy to report that Schuyler and I survived our almost 1,500-mile round-trip drive to Auburn University for the Alabama Assistive Technology Expo and Conference, where I delivered the opening keynote address and also presented a breakout session on AAC implementation from a parent's perspective. Not only did we make it through the drive without any lasting damage, but we actually had a pretty good time.

As far as the drive itself was concerned, there were highs (the Mississippi River, with which Schuyler was suitably impressed), some lows (the actual state of Mississippi itself; the parts we visited reminded me a little of an episode of "Hoarders", except, you know, everywhere) and some in between (getting lost in Alabama, which resulted in a charming and pretty drive but also added a lot of time to an already daunting journey). I've made long, 12+ hour drives in the past, but I never did it sitting on a 42-year old ass before.

The conference itself was outstanding. I'm always impressed by the participants I meet at these things, people who have dedicated their professional lives to helping folks like Schuyler and a lot of others whose monsters are pretty frightening. They've decided that this is what they want to do with their lives, and they invite an everyday schlub like me to come stammer my way through a speech because they want to hear what a parent has to say. They want to know how they can do what they do even better, even though from where I'm standing, they appear to be doing extraordinary work as it is.

Schuyler was her usual social butterfly self. She was a good kid for the duration of my presentations, which is pretty amazing when you consider that I spoke for about two hours, and yes, she's a ten-year old kid with a self-charging battery and a brain that feeds off of new experiences. A lot of kids, particularly those with special needs, require lots of order and routine and even ritual. They don't like change and they can only handle so many new experiences and people at one time. Schuyler is the exact opposite. She craves new worlds and new friends, and when she falls into a routine, that's when she's in danger of losing her way. Schuyler exists in a world with very few grooves and a few too many ruts. Conferences like ALATEC are like a drug to her.

It would be hard to say what the high point of her trip might have been. It could have been her fascination with the exhibitors, including a maker of prosthetic limbs that fascinated her. ("Daddy, I want one." No, Veruca, you cannot have a prosthetic leg, even if it does have flames painted on it.) It may very well have been her conversation with a deaf woman using her device and an interpreter but also by way of sign language that I had no idea she still remembered; she wants to learn more now, and she wants me to learn with her. Or Schuyler's high point may very well have also been the most memorable, when she lost a loose tooth right in the middle of a reception and proudly showed way too many people how much cool blood she had in her mouth. ("Look, I'm a vampire! Look at all the BLOOOOOD!")

I'm never sure if people are charmed or put off by Schuyler, but I also have come to believe that it doesn't really matter. She can be a wild kid and a clinger and a tornado, she can love you with all her heart and she can crawl up onto your last nerve, but the thing about Schuyler that I still value more than much else is her complete lack of guile. She is easily the most genuine person I have ever known in my life, and the older she gets, the more I hold onto the possibility that she might not entirely outgrow that. The thought scares me, but it also makes me inexplicably happy.

Anyway, I'd like to thank everyone associated with ALATEC, particularly Lydia Walls at Auburn and Joe Helm, Assistant Commissioner of the Alabama Department of Rehabilitation Services; Auburn's Kate Musgrove, who was the primary recipient of Schuyler's inevitable girl crush and who was nice enough not to get a restraining order; Sarah and Laramie, two students who were also on the receiving end of Schuyler's stalkerhood ("They are my sisters!"); and PRC's Sandy Baldwin, who not only took care of Schuyler during my presentation and actually helped her clean up after the bloody tooth drama, but who also cheerfully and patiently endured my troublemaking, both during my session and afterwards.

The troublemaking, incidentally, involved the identical responses that I got from many of you as a result of my question before the conference, about what you'd say to the assistive technology industry if you could. I hear it time and time again, and I see it referenced all over the AAC world. "When will AAC producers, particularly the Prentke Romich Company, produce an app that will take advantage of the iPad as a platform for its language system?" In my own defense, I think to NOT bring it up would have been timid and even wrong of me. To be blunt, I don't know that anyone is dying to have a DynaVox app for their iPad, but PRC's version of Minspeak is widely regarded as the most robust and ultimately successful language system for AAC devices. It's not for everyone, but for users like Schuyler, it has made the difference.

After quoting two of you in my presentation ("My heartfelt desire would be that PRC would develop an iPad-compatible interface.", and more pointedly, "The cost comparison outweighed the years of experience of language forming that the Vantage provided."), I gave my opinion. And at the risk of further troublemaking in the service of both a good company full of good people, and the very best of causes, I think that's how I'll end here as well.

Now, I’m sure you’ll talk a lot about this over the next two days, but let me just say that I believe that one of the most promising developments in AAC right now is the emergence of Apple's iPad on the market, as well as whatever competing products inevitably appear. For parents of AAC users who are largely ambulatory, including that huge population of kids with autism, most of the issues surrounding funding and decision-making and parental autonomy may change dramatically with the possibility of purchasing a $500 device at the mall.

And it’s not just about funding, either. It also addresses the resistance of our kids to use a speech device even under the most ideal circumstances. And it provides a rather elegant solution to the social integration problem. Kids with even the most advanced dedicated speech device are still carrying around something that tells the world “I have a disability.” Kids using an iPad have a device that says, “I’m cool.” And trust me, being cool, being like anyone else, that means more to them than it does to any of us.

The piece that is currently missing, however, is development for the iPad by companies like PRC and DynaVox. I could be wrong; there could be plans in the works to bring their language systems to the iPad that I’m unaware of. But until then, the gap will continue to be filled by smart, independent developers like Proloquo2Go’s Sam Sennott. Right now, it’s the Wild West in AAC development for the iPad.

Make no mistake. The iPad will bring a level of democratization to the AAC implementation process that parents and educators will take advantage of. And families using systems like PRC’s Minspeak-based Unity language may very well find themselves in the unenviable position of having to choose between the system they know works best for their kids and the system that they can afford. As a true believe in PRC’s language system, I have to say, that possibility breaks my heart. I don’t think I’d be exaggerating one bit to say that most of Schuyler’s success over the past few years has come about as a direct result of Unity. It has saved my daughter’s future, probably literally.

Now, I’m not sure what that business model would look like, the one where companies like DynaVox and PRC are developing for both their own devices and those available to the average consumer. But look at the trends in both educational funding and technological advances in the consumer electronic market, and I think you’ll see that someone needs to figure out that business model, and they need to do it soon.

So there you go. Please give us an app.