Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. "If we could get children to talk without using technology, that would be our preference," he says.
I was saddened and disappointed to read your comment in the USA Today article about the Proloquo2Go application for the Apple iPhone and iPod Touch. I felt it was a glib dismissal of a technology and a communications philosophy that has helped and will continue to help thousands of young people who are unable to speak but deserve to be heard.
I am the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter, a memoir that tells the story of raising a little girl with a rare brain malformation that leaves her unable to speak. The book ends, and her future begins, when she is given an augmentative alternative communication device that helps to facilitate her speech. Four years later, because of this technology (in her case, a Vantage Lite, produced by the Prentke Romich Company), Schuyler spends the better part of her day in a mainstream third grade class alongside her neurotypical classmates. She recently passed the modified TAKS test (the No Child Left Behind component for the state of Texas) and is on track to continue her schooling and even graduate from high school. Where four years ago, she was pushed off to a special education Life Skills class and was given no prognosis for an independent life, Schuyler may very well get a chance to live whatever life she chooses. None of these possibilities were placed on the table until she had the ability to speak and to learn how to construct language. All of this, because AAC technology gave her a chance.
Schuyler is hardly alone in her achievements. Her story is only unusual in that she was ultimately able to receive the speech device that could help her. She and her fellow AAC users represent only a fraction of those nonverbal kids who stand to benefit from this technology. AAC helps thousands of kids and adults find a voice and overcome a wide range of disabilities, from Schuyler and her polymicrogyria to kids with cerebral palsy or, yes, autism. As you are no doubt painfully aware, the frustration of being unable to speak can be as crippling to a child as any physical or mental infirmity. I have seen it time and time again, children who were not just nonverbal, but closed up inside an internal world of their own, unable to make the basic human contacts that they needed so desperately. All because they had to struggle simply to make their most basic needs known.
Kids who use AAC technology gain more than words on a "gadget". (In all fairness, that was a word used by USA Today, not yourself.) They find a door into a larger world, a door once locked but now ajar and ready to be kicked open. Those of us who have watched AAC technology at work have found that when these kids are suddenly able to speak through the use of electronic assistance, they show dramatic improvement in other areas of communication such as sign language and even verbal speech. This effect is of particular interest, and promise, to children on the autism spectrum.
"If we could get children to talk without using technology, that would be our preference." As the parent of a child who can't speak but who has a world of things to say, I must confess that I'm baffled by that remark. If you are saying that you'd rather see these kids use their natural voices than a computerized voice, then of course I agree. But what if the path to finding that natural voice involved technology, as is so often the case? Would you dismiss that technology so casually if there was even a chance it could help?
There's more than just a chance.
Dr. Leaf, you were quoted by USA Today because you were perceived as an expert in your field. I sincerely hope that you will take this opportunity to educate yourself about AAC technology. The next time you are called upon for answers and for wisdom, you might just change someone's life, and give them a voice.
I have a couple of things of a self-promotional nature, begging your indulgence.
First of all, this Saturday, I will be appearing at The Richardson Public Library for the Homegrown Writers Open House and Book Signing, sponsored by the library and the Writer's Guild of Texas. We'll have some copies of the paperback to sign and sell, so if you live in the area and would like to come get a book signed in pink by Schuyler, or if you're a scary stalker and have been waiting for the perfect moment to strike, here you go. I'll even provide a map since I know how frustrating it can be to get lost on the way to a good stalking.
My second item is for Kindle users. I know that my book was available for the Kindle for a while, but was withdrawn after it was discovered that the scan of the book was sort of crappy and unreadable. I've been told that it's being redone, but I haven't heard anything in a while. Frustrating, but not much I can do but wait. Well, you know, wait and bitch. Which I appear to be doing right now.
In the meantime, however, Amazon has a new Kindle service: blog subscriptions for the Kindle. So if you've always wanted to be able to read this blog on your snazzy Kindle reader, then today, dear hipster, I am here to make your dreams come true.
A surprising number of people have emailed me to ask for a copy of the keynote address I delivered to the Texas Speech Language Hearing Association's 2009 Convention at the beginning of the month.
The requests have mostly been coming from people who were there, which is nice. I would have thought it would have been enough fun just sitting through it once.
Anyway, if you're interested and have absolutely nothing else to do with your time, here it is, in all it's verbosity. Click and enjoy.
Celebration of Faculty Creative Works from 2007-2008
The Office of the Provost and the UT Arlington Library announce the first annual exhibit to highlight recent books, art exhibit catalogs, music recordings and patents of the UT Arlington faculty and staff. Provost Donald R. Bobbitt and Dean of the Library Gerald Saxon will toast all exhibition participants at a reception honoring these individuals.
The depth and breadth of scholarship and creativity at UT Arlington is a great source of pride on campus and beyond. The exhibit will open with a faculty and staff reception on Tuesday, April 14, from 5 – 6:30pm in the sixth floor atrium of Central Library.
For several years the library has sponsored an annual lecture series called "Focus on Faculty," featuring a half-dozen talks a year by award-winning faculty. This exhibit takes it to the next level and features more than 80 entries, recognizing works completed in the 2007-2008 academic year.
A booklet cataloging each entry will be available, and the exhibit will remain in place through May 31, 2009. The exhibit is free and open to the public. Hours of the Central Library sixth floor atrium are Monday, 8am to 7pm and Tuesday through Saturday, 8am to 5pm.
(Of all the recognition I've received for the book, the ones at my old university mean the most to me, no doubt because of my less-than-stellar performance as a student. That's right, kids. Stay in school. It's more fun than actual work.)
Those of you who are always saying "More Julie, more Julie!" will be happy to know that she shot video on our trip to Austin, and you can see some of it here, along with the short radio piece that ran on KUT 90.5 Public Radio in Austin.
Don't look for anything capital-I Important here. It's just for fun. (I may post another one soon of the next day, at our signing at BookPeople. So there's something to live for if you're feeling sad.)
So yes, it turns out that 2500 people is, well, a lot of people.
I got a sense of that fact when we went to the sound check the day before the Keynote Session of the 2009 Texas Speech Language Hearing Association Convention. We were looking for Ballroom D, but when we peeked in the door to Ballroom G, we saw that I would in fact be speaking in Ballroom All-Of-Them. The partitioning walls had been retracted and the entire room was open. Three giant screens loomed over the stage, two of which would display my slide presentation (mostly photos of Schuyler, because I'm no dummy) and one which would show my head all giant-sized as I spoke. When we showed up the next morning, the room was full and some people had even been turned away. It feels surreal even to say that, but there it is.
I'm happy to report that the speech went well, I believe. I got a great deal of positive feedback from people afterwards, and no one booed or threw any of their breakfast tacos at me. The book signing sessions immediately following were crowded and friendly, with Schuyler signing in pink and generally charming everyone. (Again, I'm no dummy; I understood who people were there to meet.) I spoke to a local public radio reporter without sounding too idiotic, and we even visited the state capitol building to meet the governor (who was a no-show, sadly; I wanted to see Schuyler give Rick Perry one of her tackle-hugs) and other representatives about some upcoming bills that are of great interest to speech language pathologists and their patients.
Everywhere we went for the next two days, people would come up to us and say that they cried or were inspired by the speech, and I can't even begin to tell you how much that means to me. It's a powerful thing for me to hear because the fact is that we're not that different from any other parents out there who have fought and will continue to fight for our disabled kids. If we're different at all, it's because 1) the book has given us a voice where so many parents have none, and 2) Schuyler's story has a very rare happy ending, or at least a happy beginning. As a result, the idea that I could represent other parents is a humbling one, and one that I take very seriously.
The Texas Speech Language Hearing Association is made up primarily of SLPs (speech language pathologists, if you're not into the whole brevity thing). They represent one leg of the crucial balance for kids with disabilities who attend public schools, with teachers and parents making up the other supports. It's a wobbly tripod under the best of circumstances. I acknowledged in my speech that the two biggest obstacles for SLPs as they attempt to implement therapies and technologies are teachers and parents.
Teachers are overwhelmed by their class loads and by the labyrinthine system put in place by school boards and state-mandated testing and No Child Left Behind, and can be resistant to new technologies and therapeutic approaches. Much of the time they're just getting used to the last Big New Thing that came at them. And parents often feel overmatched by the capital-E Experts they face when they go in for their kid's IEP meeting. Until they take up the fight, educate themselves and become empowered, special needs parents serve as a kind of wind drag on the process, which is unfortunate and even frustrating, because we should be leading the fight, not following hesitantly behind.
Part of why I wanted to deliver this speech was to make the case that when empowered, special needs parents become a powerful force for change and progress. "No one is a quicker study," I said, "than the special needs parent." Julie and I couldn't help Schuyler much; we weren't qualified or trained to do so in a meaningful way. But without our persistence and our self-education and our willingness to be a pain in the ass when it was necessary, Schuyler wouldn't have been helped. She wouldn't have had the opportunity to become who she is today, and who she's going to be tomorrow, or in ten years.
And that's not because we're such swell parents and should be lauded for our efforts. It's because that's our job. And if you're a parent of a special needs kid? It's your job, too. If your kid gets into the finest program in the country, or if they end up in some awful place where they get parked in the corner and are simply fed and watered like a plant until they turn seventeen, the fact remains that eventually, they won't be anyone's responsibility but your own.
And when the school can look up at your kid, shrug and say "Not my problem", you as a parent had better not be standing there thinking that it's time for you to get involved. Because by then, it'll be too late. You will have squandered your opportunity to save your child, and you will get to take over the feeding and watering and regretting the wasted years.
-----
To the SLPs represented at the TSHA conference, I said this:
What does the future hold for kids like Schuyler? I wish I knew. There are so many kids out there like Schuyler, so many stories, many of them sad and most of them overwhelming, and yet the one thing that I truly believe these kids have in common is that none of their future stories is written. I watched Schuyler defy the expectations of her earliest teachers and doctors, and I've learned to trust in our ability to be a pain in the ass on her behalf. Her support in Plano has been so solid and so consistent that there are times when I forget, for just a moment, how many times she could have been left behind, in general special education classes where she wasn't taught so much as cared for. I forget the devil of low expectations so often assigned to her, and how hard we had to fight to throw those expectations off. If Schuyler has flown as high as she has despite the limitations that were consistently placed on her, can you imagine how far she and all her fellow students might go if, from the very beginning, they could be given an environment that focused not on what they can't do, but on what might be possible? Can you imagine that world where parent/teacher meetings didn't consist of "Here's why we can't try that" but instead simply "Why not?"
As parents of broken kids yearning for repair or compensatory development, we go into battle against our children's monsters clutching whatever weapons we can find. Rubber swords if necessary, nothing but our hands if need be. If we seem desperate at times, it's because we are, we are absolutely desperate, and you'll find that most of us will do whatever it takes to defeat those monsters, or to muzzle them, tame them, to put them on leashes and just manage them. We just don't want to do it alone. We need you. As educators and SLPs, voters and taxpayers, as fellow citizens of the world and children of God, you can be our heroes. We're desperate for heroes most of all. All of you can be the ones who step up beside us and say "Here's a real sword, let's take care of this."
-----
It was an honor and a privilege to speak to so many people, particularly ones who work so hard to help Schuyler and her friends. I would also humbly suggest that it is THEIR honor and privilege, as it is mine, to work with kids like Schuyler. The work is hard. The rewards are immeasurable, and go all the way down to the soul.
It's an exciting week for us as the Rummel-Hudson take to the road.
We're heading back to Austin, a town that generates a lot of mixed feelings for us. On one hand, everyone knows how hipster cool Austin is. by golly, and having been in suburban Plano for a few years now, some hipster cool sounds like a nice change of scenery for a few days. On the other hand, it was Schuyler's Austin-area school that failed her so miserably, and Plano's remarkable program that gave so much of her future back to her, so I suppose we're returning with a little bit of "How do you like us now?" going on. Like the Prodigal Son, if he'd gone off and made it big and was just coming back to show his dad what an asshole the old man turned out to be.
We're going back for two events. On Thursday morning, I'll be giving the keynote address at the Texas Speech-Language-Hearing Association Convention, followed by at least one and possibly two book signing sessions with Schuyler. TSHA is the professional organization for speech-language pathologists and audiologists in Texas. This is one of the larger conventions of its kind in the country, and yesterday I was told that so far, about 2100 people have registered to attend the keynote session on Thursday morning. That's a lot of people. Yeah. A lot of people.
Oh, sorry. Paralyzed for just a moment there. Moving right along.
On Friday evening, I'll be speaking and signing copies of Schuyler's Monster at BookPeople, one of my favorite places in Austin. It's one of the more venerated independent bookstores in the country, and I'm really happy to be appearing there. I can't imagine I'll be doing very many more bookstore appearances for this book, after all; it's been out for over a year and I've done a LOT of them already. If this is to be my last bookstore appearance, I feel like it's a good place to end.
So if you're in the Austin area this week, I hope you'll come see us. Julie and Schuyler will be there for both events, which is always a selling point for these things. We'll be easy to pick out of a crowd. Look for the hot pink Big Box of Words.
So there's a part of my San Francisco Adventure Story that involves injury, blood, general nastiness, pain and even partial accidental amputation. I'll save that part for the end, so that those of you prone to the vapors can stop reading. (And also so my extra-nasty readers can skip ahead. You know who you are.)
My trip to the San Francisco Bay Area was, I believe, an outstanding success. I managed to schedule a surprising amount of productive-type behavior into five days, and I got to see a lot of what is an absolutely beautiful city, even when it's shrouded in rain. Which it was, by the way, beginning the day I arrived and lifting, I suspect, at roughly the same hour that my return flight took off.
The night before I left Texas, the Dallas area was rocked by tornados (tornadi?), so I don't know, maybe it's me.
I'd be the worst sort of jackass guest if I didn't stop right now and express my gratitude to Ian Golder and Monique van den Berg for putting me up (and putting up with me) for the duration of my stay. Five days is a long time to have a house guest, but they never complained and not even once gently suggested that perhaps I'd be more comfortable if I got a room at a hotel or one of the city's many fine homeless shelters. More importantly, their giant dog never tried to eat me, which I also consider the sign of a polite host.
(Actually, the truth is that I have something of a Bigdogaphobia, thanks to a horrible childhood attack by, ironically, the one breed of big dog that doesn't seem to bother me now, a Great Dane. I used to have scars on the back of my legs that told the tale, but I am far too old and fat to be able to look back there now. My thanks to Ian and Monique, and Goulash the Giant But Gentle Dogzilla, for being sensitive to my weird dog issues.)
The first night I was in town, I spoke to Monique's writing class at the College of San Mateo. If you're wondering what possible situation I might consider to be absolutely surreal, it might be speaking to a class that is studying personal narrative by way of my own book. Yes, my book was the assigned text; the students were reading it and taking tests about it and having classroom discussions about it. I could try to spin that experience into some fancy, existential parable, but in all honesty, it was just extremely damn cool to be me that evening. I highly recommend it.
I agreed to help workshop some of the personal narratives written by the students, and to be honest, I was nervous about it. I had no idea what I was going to say if I had to workshop an essay that was, well, bad. But here's the thing: none of them were. Everything I read had a real sense of voice; everything had something to say and a concept of how they wanted to express it. I was legitimately impressed, and only resented their youth a little. Damn kids.
I'd never been to San Francisco before, but there are a number of people in the area whom I knew but had never met, in that nerdy internet way that was weird a decade ago but is just now The Way Things Are in the World. My signing at Book Passage in Corte Madera gave me the opportunity to meet some of them in the flesh, as well as see some people I'd met previously and at least one friend from high school. I know I'm going to screw this up and forget someone, but I'd like to thank Shannon, Ian & Monique, Annie, Kate, Alison, Halsted, Kara, Char, and the AMAZING Edith Meyer, who once again showed up with food, this time cookies, shortbread and a lemon loaf that I think I would have knocked down an old person to get to.
Most of all, however, there were two other special guests. Courtesy of Skype and a good sound system set up by Dana, the awesome events person from Book Passage, Julie and Schuyler appeared on my laptop and answered questions and generally charmed the pants off of everyone. So if you weren't there, well, you missed a lot of charmed, pantsless people. Your loss.
(photo by Shannon Kokoska)
* * *
The rest of my visit was vacation, really. We went to the Big Basin Redwoods State Park and saw many a mighty tree, and while I took lots of photos, it's impossible to get a sense of just how gigantic some of them really were. In person, it was "Holy shit, that's a big goddamn redwood!" When you look at the photos, it's more like "Oh, look. A pretty tree."
(photo by Monique van den Berg)
My last day in San Francisco was spent sightseeing in the city with Monique and attending a concert by the San Francisco Symphony, which was Monique's amazing Christmas present to me. The performance was conducted by Charles Dutoit, one of my favorite conductors who, with the Montreal Symphony, produced some of the best and most enduring recordings of the last thirty years. San Francisco Symphony performed Debussy's "Oh, look. A pretty deer.", Stravinsky's Symphony in C, and closed with Rimsky-Korsakov's Scheherazade, which is frankly a much better piece that R-K really had any right to compose, based on the rest of his output. Don't get me wrong, Rimsky-Korsakov was a brilliant orchestrator and wrote some fine music, by golly, but in Scheherazade, he really stepped it up. He did us hyphenates proud.
I had a great time in San Francisco, and I'd love to return soon. There's a possibility that Schuyler might attend a summer camp for kids who use Big Boxes of Words, although I might have to discover buried treasure or lost mob money to make that a reality.
I hope it happens.
Okay, I mean it now. Tender-hearts stop reading now. I'm serious. If you don't like the rest of this, don't leave me any crybaby comments. You've been warned.
So yeah, I cut off the end of my finger.
The morning I left for California, I was packing my toiletries and had already put my razor in a side pocket of my little bathroom bag. I decided that it would be a good idea to store my toothbrush in the same pocket (NOTE: This was not actually a good idea), and as I pushed my toothbrush in, it stuck on something, my hand slipped, and my middle finger (aka "The Bird") on my right hand made a rather abrupt and rude introduction to the little Precision Trimmer blade on the top edge of my razor, which if you're into detail, is that funky five-blade "Fusion Power" thing from Gillette.
(Because, you know, it has five blades. How could I use something that just had four, or even three blades -- pshaw! -- all the while KNOWING that there were five blades out there, PLUS that one nasty little trimmer blade on top? Get fucking serious.)
I just went to the Gillette site to see what that little top blade is called, and ran across the following line in the ad: "So comfortable, you barely feel the blades."
I felt the blade.
Now, before you begin to wonder (as you inevitably will) if I immediately went to the emergency room, well, here's the thing. My plane was leaving in about an hour and a half. You just read about the wonderful time I had in San Francisco, and also how many professional commitments I had there. I couldn't just NOT go, all because I cut myself with my razor, and not even shaving but PACKING.
Also, in my own defense (and Julie can queasily back me up on this), it bled. A lot. So much so that I couldn't actually see what I had done. It hurt more than I thought a cut should hurt, and it would not stop bleeding for anything, no matter how much pressure I put on it. But still, I just thought it was a deep cut, right? And when we bandaged it up tightly, the pressure made the bleeding stop. I figured, it just needs some time to settle down. So we threw my bags in the car and drove to the airport, my finger hurting wildly but no longer squirting blood like a Monty Python sketch.
It wasn't until I got past security that I noticed that the bleeding had begun again, seeping through the bandages like, well, like a poorly bandaged wound that really should have been seen by a doctor. If before was a bad time to go have it looked at, then sitting outside my gate with my shoes off wasn't much better. I found a bathroom, decided against removing the bandages (which I still think was probably a smart move on my part, and one that my fellow travelers and bathroom-users would probably agree with) and simply applied MORE bandages on top on the poor little Dutchboy-like original strips that were bravely losing the fight against the flood.
Surprisingly, this second bit of first aid (would that make it second aid?) held, and I made my flight without incident. It wasn't until I attempted to change the bandages before class that I realized how bad it was.
Because it bled again. Badly. And now I saw why.
Okay, so first of all, sit down. Then imagine the very tip of your finger, or my finger really, if that makes you feel better about it. Imagine a piece about the size of a dime (which constitutes most of the tip of your finger, really) and about the thickness of two quarters. Now imagine it connected by a tiny piece of skin. Now imagine it NO LONGER connected by that tiny piece of skin. Imagine it instead stuck to the inside of a bloody bandage, a small not-bloody circle in the middle of a brownish-red tragedy.
And if you're REALLY into detail, also imagine taking your killer razor out of your bag to inexplicably use it against your own stubbly face, despite the fact that it has tasted human blood and may just want more more more. Upon examination, you find that it is surprisingly not at all bloody, because when you cut yourself, your "Ow ow, holy shit, ow motherfucker OW!" reflex kicked in quickly enough to get you to the sink before any real bleeding began. What you do find is what appears to be a small piece of clear plastic stuck in the blades. But when you fish it out, you remember that most clear plastic doesn't have little fingerprint ridges in it. Then you sit down again. And maybe not eat for the rest of the day.
Apparently I cut it twice. One was the big cut, and one was a little bit shaved off the tip, waiting for me to discover it later.
So yeah. I cut off the end of my finger.
Now, I didn't cut off a major, life-changing chunk of my finger. I'll have a flat spot, that's certain, but I can still count to ten and Schuyler can still paint all my fingernails. Still, the cut went deep into that part of the skin where the nerves live, and they do not like being exposed like that. Two weeks after the cut, it is healing up nicely (amazingly, no infection, which goes to show that God really does protect children and stupid people), but you know what?
It still hurts. A lot.
It looks sort of cool, though. I'll leave that to your imagination.
My friend and fellow fancy pants author Karen Harrington and I presented a panel for the Writers' Guild of Texas earlier this week, called "A Year in the Life of Two Debut Authors", and Karen has done a good write-up on her blog of some of the topics we touched on, in an entry called "8 Tips for The Debut Author".
Clearly, Tip #9 should be "Have someone look at your hair before you go out in public". Well, what are you going to do? Karen is always so pretty and put together and organized, and I am just a big mess all the time. She's nowhere near as compelling of a cautionary tale as I am, though. So, you know, I've got that going for me.
I am working on a few entries about my trip to San Francisco. They should be posted at some point between today and the cooling of the sun and the subsequent end of civilization as we know it.
If you're in the Bay Area, this is your reminder to come see me tonight at 7:00, at Book Passage in Corte Madera. I think it's going to be a lot of fun. There may be some special surprises of the snack variety and just maybe, if I can figure out how to make it work, a special guest appearance of sorts. Oo, a teaser.
I'm having an amazing time in San Francisco. I spoke to an advanced composition class at the College of San Mateo, and afterwards we workshopped some of their own personal narrative pieces, all of which were really very good. I hereby repudiate all my cracks about "kids these days". I also visited the Bridge School and a program very similar to Schuyler's in Oakland, and it was an experience that I am still processing and will write about at length soon. Today I'm going to explore the city with Monique, and I'd be a terrible father to Schuyler if my day didn't include a visit to the Pirate Supply Store.
Oh, and I accidentally cut off the tip of my finger. I suppose I'll write about that soon, too.
"Somewhere in the process of advocating for his daughter's undaunted spirit, Robert comes to believe in himself as a father. Schuyler's Monster paints a haunting picture of the soul's need to be known, as well as the painful way in which becoming a parent forces one to recognize one's weaknesses and limitations."
I just wanted to post a reminder for those of you in the Bay Area, I will be appearing at Book Passage in Corte Madera, California on February 13th at 7pm. Come see Jimmy Carter the night before, and then just camp overnight. I'm sure they won't mind.
It's going to be a great trip, mostly because I am going to get to see a lot of old friends and meet some people I've known online for years. I'm also visiting some schools, such as the famous Bridge School, that have similar programs to the one Schuyler attends here in Texas. And I plan to be a shameless, generic San Francisco tourist, all Golden Gate Bridge and cable cars and giant trees and Rice-a-Roni. Sorry if I embarrass anyone.
The following Monday night at 7pm, I will be speaking at the regular meeting of the Writers' Guild of Texas, along with my friend Karen Harrington, author of Janeology. The topic will be "A Year in the Life of Two Debut Authors", and it should be a lot of fun. The meeting takes place in the basement conference room of the Richardson Public Library in Richardson, Texas.
I was going to apologize for bothering everyone with book promotional stuff yet again, but you know what? I'm not going to do that.
I recently read an excellent post on author Gwen Zepeda's blog that really made me think. (You should read Gwen's wonderful new novel, Houston, We Have a Problema, by the way. I am digging it muchly.) Hers is a common experience for authors. We find ourselves almost in an apologetic position for actually getting our work into print, and especially for being expected by our publishers to market ourselves in the process.
Gwen writes about being confronted by the stranger who has an axe to grind about publishing, but it happens with the people in your life, too. For a while you just tell yourself that it's probably hard for them to watch someone they know "suddenly" find success. You cut them slack because you think they'll come to terms with it eventually. The person who you are hasn't changed, after all, and neither have the reasons you wrote your book in the first place, reasons that have very little to do with being a Fancy Pants Author. You got published, not because the system is broken and only rewards hacks, but because you worked your ass off and created something you believe in. Still, you don't make an issue out of it because you don't want to look like a dick.
To be honest, I'm tired of feeling like I need to apologize for it. I don't think I'm going to do that anymore.
So yes, let's take a look at this week, this one week in our lives here. I'd call it a roller coaster ride, if there existed a roller coaster that required both an oxygen tank for the highest altitude and a pressure suit for the subterranean low parts. Mostly, it's just a weird week.
Sunday. We started off the week with an all-nighter, in preparation for the Sleep Deprivation EEG the next day. Schuyler and I got through it with beverages, snacks, Cloverfield, Speed Racer and King Kong (the Schuyler "Good Parts" version, which basically skips the first hour, and includes the scary fish monster in the director's cut).
Monday. Well, you read about her EEG already. No seizures, but episodic abnormalities recorded. Neurologist said that he will schedule a new EEG, this one lasting 48 hours and requiring Schuyler to wear a mobile device for two days. After the unhappy ending of Monday's EEG, I'm not looking forward to telling her that she gets to do it again, and for, you know, forty-eight times as long. The doctor's office will call us to let us know when this new EEG will occur. If past experiences with neurologists are any indication, this appointment will be sometime in June.
Tuesday. Today, actually. The trade paperback edition of Schuyler's Monster came out. You went and bought a copy, plus two for your friends, right? No? Okay, well, here you go.
Wednesday. Who knows what tomorrow will bring?
Thursday. This is the day of my big author event at the Dallas area's extremely cool new independent bookstore, Legacy Books. (Beware, there's a loud thing on their website.) There's a wine bar, too. I'm just saying.
Which brings us to...
Friday. Turns out I was wrong about neurologists. When she gets out of school, Schuyler will be picked up by Julie, who will then take her to the neurologist to have her funky wire hat put in place for the weekend. I have no idea what it will look like, although I'm hoping it'll be something like this:
Schuyler will wear the funky wire hat until Monday, when I will take her back to have it removed from her no doubt slimy and vile little head. Then there'll be about fifty shampoos and as much ice cream as she can eat.
It was a delicate dance, telling Schuyler about her impending return to the EEG, which she ended up hating yesterday. She was resistant to the idea at first, but she responded very positively to that oldest parenting tool, the bribe. She says she's excited about it now, excited about proving that she can be a good girl, and a big girl, in order to claim her Prize. Her Bribery Prize.
Sometimes people ask me how I think Schuyler will react to the things I've written about her here and in the book. Perhaps I'm in denial, but I truly believe that she will read my words and know of my love for her above all else, and her grasp of the bond we share will only be strengthened by her understanding of how deeply that bond has run, her whole life. There is very little I have ever written about her that I think she might find upsetting.
But Schuyler, my love, my sweet darling girl, if you look back on this and read this entry from the vantage point of adulthood, I have a shameful confession to make. Do you remember the bribe I offered you in exchange for your cooperation in another pain in the ass EEG? The new Mac, your very first computer, the one I said I would buy for you when I got my next royalty check in February of this year, IF you complied with this new test?
Well, yeah. Funny thing. Turns out, I was already planning to get it for you anyway. Dick move on my part, I know.
On Tuesday, the trade paperback version of my book comes out. On Thursday, I have an author event at a fancy venue, with good friends there. And the thing is, I am really very excited about it all. But at the same time it feels distant, like party sounds coming from the house next door. My focus, borne out of five and a half years of vague anxiety suddenly made real, is aimed like a laser on tomorrow.
Tomorrow's the day. Tonight, Schuyler and I will stay up all night watching scary monster movies. (If you saw the lineup, you'd either be jealous or you'd call Child Services.) Tomorrow, a neurologist will glue sensors to her pretty head and attempt to flush out her monster.
I'm not asking for your prayers, because you know how I feel about your God and what he's done to my child. But I hope you'll think good thoughts for us and send whatever positive energy you can in Schuyler's direction. Could that represent the same thing? Perhaps. All I know is that we need answers, once again.
I wanted to take a photo of Schuyler for this entry, so I went in her room and asked her to grab her favorite monster. She picked this guy, a gift from my editor at St. Martin's. As I took photo after photo, she began explaining to me about tomorrow, about what they were going to do, and why. I was really surprised to see that she was processing this EEG and the reasons behind it; I've explained it to her, but I wasn't sure she got it until now.
Even more interesting to me was that Schuyler understood the connection between the monster in her lap and the one in her head. I get the sense that she loves them both, in her weird little way.
I haven't done one of those end-of-the-year wrap-ups for a long time, mostly because I think they are usually more interesting to write than to actually read. It's probably like hearing about someone's dreams, except worse, because if you've been reading for at least a year, you end up thinking "Yeah, I know, I was there for that."
But I don't know, this year feels different. 2008 certainly feels more deserving of a self-indulgent recap, as all personal blog annual recaps are required to be, by law. I believe it's a federal law.
For me personally, it was obviously a significant year, and not just because I was thirty-ten and still inexplicably alive. 2008 was the year that I was published. A book. A real, hardcover, not-printed-at-Kinko's, gigantic New York publishing house, "fuck you, trees" book. I did all that work, I wrote 90,000 words that someone wanted to publish, I went through an editing process that was deceptively painless, and one day a box arrived at my apartment that contained something that no one can ever take away from me now. Last week, ending the year, I received another, similar box, this time with paperback copies of this thing that I did, this thing that seems so unlikely even now.
I have loved every moment of it, and it has been an incredible adventure, one that I don't expect will repeat itself, no matter what I publish in the future. It's been amazing mostly because my family has been along for the ride. I'm not sure how much Julie enjoys living in the light now, although she's been fantastic about the whole thing, but for Schuyler, it's been an amazing trip. She's developed into an even more confident and sociable little girl, if that's possible.
More importantly, I believe the attention from the book has shown Schuyler that she really is unique and different, but far from being a freak, she's a rare creature of beauty and spark. She knows she's broken, but she's also learning that people love her not just despite that, but because of how she deals with it. She understands that she has a monster; suggesting or pretending otherwise is an insult to her, as far as I'm concerned. But because of the book and the attention she's received from it, I like to believe that she also sees that it is in taming that monster and making it small that she has become her own kind of perfect.
And that's really why I wrote the book, and why I wanted to get it out in the world, even if it had only sold 500 copies and gotten remaindered in six months. (Note: It's doing a little better than that, I'm happy to report.) It was my love letter to Schuyler. It was my insurance policy, the thing that would stand for me if I ever got hit by a bus or killed by internet stalkers. She will always have the book, and so in that respect, 2008 was the best year of my life with Schuyler. No matter what, she'll always have that, and will always know what she meant to me, and how much I admire her.
This was a good year for me for making new friends and reconnecting with old ones, mostly because of the book. It hasn't been perfect, of course. I believe resentment is probably responsible for finally killing off at least one friendship, albeit one that was admittedly on tottering legs anyway. I think that's too bad; it's not as if I took someone else's shot at publication away in achieving mine. But for the most part, I've met some really amazing writers over the past year, and I've reconnected with old friends from high school who saw the articles in People and Good Housekeeping. (And just why are people my age reading Good Housekeeping, anyway? Oh, yeah, we're the target demographic now. Time, you suck.) Best of all, I've watched some old but casual friendships deepen and flourish. My friendships are a little like a garden, I suppose. The weeding's not much fun, but it's the new blossoms that take my breath away and remind me of what's good in the world.
I have no idea what to expect from 2009. The year begins with the paperback release of my book, but the day before, it also sees Schuyler's return to the world of doctors and specialists and questions. The other day, Julie very quietly said, "I think Schuyler's PMG is starting to manifest itself more," and I think she might be right. We've both seen more of her little spells, and she's starting to have a slight increase in difficulties with her fine motor skills. She's only signing with her left hand now, for example, and her handwriting seems to be challenging her a little more, too. If I had to sit down and face this thing head-on, I might be forced to admit that when I think of this new year, I am filled with a dread, a persistent feeling that something's coming, and not something nice. I'm Schuyler's father, and I'm prone to considering all the worst-case scenarios, I know. But I also know Schuyler, better than anyone else in the world save one. When she starts to experience changes, we see it. I think we've already done more than enough to convince the world that we know what we're talking about, and yet I suspect we're about to be right back in that swamp again, the one where we're the idiot parents and someone else is The Expert. This time, I think we'll be ready.
Most of all, however, I think that no matter how rough 2009 might turn out to be or how big the monster grows, once again it will be Schuyler who will show me the way. She continues to be the strong one, and the smart one, and most of all the tenacious fighter. I see the monster again after so much quiet time, and I despair. Schuyler sees an ass that she needs to cheerfully kick. That will always be the difference between us, and perhaps it's the way it's supposed to be.
I think about that a lot. How Things Are Supposed To Be. I've never thought this was it, of course. So many people see Schuyler through their own prism, and so she becomes and angel or a savior or whatever she needs to be for them. As she steps into a new year as a nine year-old, Schuyler is everything she is perceived to be, and much more. She's a broken yet priceless doll, sadly incomplete and yet more perfect and beautiful because of it. She's an otherworldly being who speaks in a beautiful but foreign tongue, but she's also the quintessential nine year-old girl who lives in Chuck Taylors and wants to be Kim Possible. She's a chaotic tornado of energy who bristles at authority and thrives on change. Schuyler doesn't need anyone to teach her about God or Jesus or anyone else who has failed her, and yet she's a child of God, like the rest of us. She's a child who deserves an explanation from that Divine Bully, but to whom it will probably never even occur to ask.
As the new year dawns, it's Schuyler whom I'll be watching, and following, and if she can make her way through this grand rough world, one that both fails her and thrills her at ever turn, then I suppose the rest of us can, too.
Besides, she's the only person who likes my moustache, even if just as an object of amusement.
For last year's words belong to last year's language
An article about Schuyler's Monster appeared in the December 18, 2008 edition of Neurology Today, a publication of the American Academy of Neurology. It's a positive review and analysis of the book and its place in the ongoing discussion of the complicated relationship between physicians and the patients in their care.
The article, by Mary Jo Harbert, MD and Doris Trauner, MD, is titled "What We As Physicians Can Learn From Our Patients". The thing I like about this article is that it comes from a new perspective for me. This article is written by, and for, neurologists and physicians, and getting their stamp of approval means a great deal to me. More importantly, Drs. Harbert and Trauner understand one of the more important points I was hoping to make with the book.
"For doctors, this book reminds us that children with developmental disabilities also need to be challenged, just as neurotypical children do, so that they can maximize their potential."
In real life, events do not wait for the proper moments in perfect chapter order.
There are really two things going on right now that are taking most of my attention. On one hand, my book will be released in trade paperback on January 6th, followed shortly by new author appearances at a number of locations. For the paperback, I'm trying to focus on independent bookstores and want to visit different parts of the country where so many of you who have asked might actually be able to attend. (I'm looking at you, San Francisco.) Two days after the book release, I'll be at the amazing new Legacy Books here in Plano.
(If you live in the area, you should really come. The store is huge and beautiful and has a liquor license. And as an additional bonus, my lovely friend Monique van den Berg will be there. She's an exceptional and popular writer who was kind enough to contribute study guide questions for the paperback edition of Schuyler's Monster. I suspect that between Monique and Schuyler, I will be the third biggest audience draw to my own signing. I can live with that.)
So that's the week of the paperback release.
The day before the book release, Schuyler has an EEG, to determine if she is having absence seizures.
Okay, so let's talk about the seizures.
The test itself should be interesting. It's called a "Sleep Deprived EEG", and that's exactly what it is. The night before, Schuyler is not allowed to sleep more than four hours (and preferably not at all), which of course means that someone will have to stay up with her. Given my regular insomnia, the job will fall to me. Julie will sleep and be ready to do all the driving (and listening, and thinking, really) the next day, and I will be up with Schuyler all night, probably watching monster movies and whatever else I can think of. When she's a zombie the next day, I'll be there with her, hungering for brains.
The next morning, neurologists will glue little sensors all over Schuyler's head, flash some lights in her face and then send her off to sleep for an hour or so. The idea is that the lack of sleep and the fancy light show will trigger seizures that will then be recorded by the EEG. (Remind me to add Speed Racer to the all-night film line-up; it's one of her favorites, and if anything will trigger seizures, it's that movie.)
The problem with this test is that it can only prove a positive, not provide a conclusive negative. If she has a seizure during that hour or so, then we know she's having them. But if not, all it means is that she didn't have a seizure during that time period. After that, if nothing was seen, I believe the next step is an ambulatory EEG, in which she is wired up to a portable sensor unit like a little laboratory capuchin monkey and sent into the gawking world for twenty-four hours. I have no doubt that Schuyler would love that. She flies her freak flag higher and more proudly than anyone I know.
So that's what's next. If there's a little monster waiting, we will flush it out. Well, I shouldn't be overly dramatic about this. We don't actually know that she's even having absence seizures at all. She turns nine this coming Sunday, after all; there's a condition that that causes an inability to focus that many nine-year-olds suffer from. It's called being nine.
There are people who are very close to Schuyler and should know better who are perhaps in bit of denial about the possibility that she's having seizures. I understand that impulse, I understand it completely; I'm fighting it myself. There's a numbers reality here, however. We've known for five years that Schuyler had a ninety percent chance of developing seizures, and ninety percent is pretty high.
That means that in a world population of -- what, almost seven billion people? -- there are maybe a thousand that suffer from bilateral perisylvian polymicrogyria. So really, what we're hoping for is that Schuyler is going to randomly join a group of about a hundred people in all the world, the ones with BPP but no seizures.
I'd love to think that could happen, and it absolutely can, but still, you know? Julie and I talked about this the other night, and we were a little surprised to find that both of us had a secret, shameful wish. We both confessed, almost in a jinxy, simultaneous way, that we were both sort of hoping, maybe just a little, that Schuyler's EEG comes back positive.
I know, that sounds wrong. It feels wrong, really, but there's a harsh reality behind that wish. If Schuyler's EEG comes back negative, and the subsequent battery of tests also show that she's not having absence seizures but is just a spacey little kid, that's good news. It means she still has a chance to be one of that hundred.
But if you are willing and you are capable of looking the statistical reality in the face, then what a negative EEG most likely means for Schuyler, and for us, is a return to the waiting game. In my head, I envision us grabbing a magazine and the tv remote, scooting our cool red couch back under the swinging Sword of Damocles and sitting again. Waiting.
If that monster is coming, we're tired of waiting for it. Get your ass here already so we can go to work.
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.
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.
