September 26, 2006
I guess I'm not the only one who felt that way:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
September 25, 2006
There's not another artistic figure who has had as great an impact on my musical life as Shostakovich, but that's not the whole story. He is also a personal hero of mine, someone who lived in the most oppressive society in human history and managed to not only survive but also to create a body of work that expresses the reality of life in Stalinist Russia with an emotional honesty and clarity that would have been impossible in any other artistic genre.
When Schuyler was a baby, I promised her I'd take her to Russia in the summer of 2006 to celebrate this anniversary with her. Obviously, it ultimately turned out to be undoable. I would feel uncomfortable traveling in Russia with a non-verbal child, and I'd feel uncomfortable traveling anywhere in the world thanks to our non-sentient president. But I'll be listening to Shostakovich's music today, and reflecting on his life.
So there you go. Some artsy fartsy music jabber for you.
This was super cool since I was pretty sure the notice was there, but I hadn't actually seen it yet. It's always nice to be able to hold something like this in hand and be able to actually see the other articles so I can feel all legitimate and flip the pages until I get to the Deals section and see HOLY CRAP, THAT'S MY PHOTO.
Well. That'll wake you up in the morning.
September 20, 2006
1) A comment was left on my last entry letting me know that there was a blurb about me (apparently generated by the Publishers Weekly article) in the Sunday Free Press in Winnipeg, a city that, for those of you who are a product of the American public schools like me, is in Canada. How cool is that? I'm NEWS, baby. Canadian news, no less.
2) In order to keep from cluttering up this fine fine blog with news and jabber about the book, I've created a book site over at SchuylersMonster.com. I keep reading how authors are expected to take up more and more of the promotional duties for their work, and I'm getting an early jump on it. I've been looking at different author sites, and I think this is pretty well in line with what's out there.
Just so you know, it's not all sassy and chaotic like this blog. I do not believe I shall be dropping the F-bomb over there with such Lebowskiesque abandon, for example. It's a professional endeavor, after all, with the single purpose of promoting the book. St. Martin's Press is taking a risk on a new writer like me, and I'm certainly going to do everything I can to make sure their investment pays off.
Am I a sell-out? Well, I don't know. It's my book, after all. It would be pretty stupid of me not to start doing everything I can to make it a success starting now. Besides, you know the reason I never sold out before? No one was buying.
Anyway, if you're interested in following the progress of the book, I'll be doing most of that talk over there. There's even a blog. I'm fancy!
September 13, 2006
It's hard for her, I know. She doesn't express frustration with her situation very often, but sometimes she just can't say what needs to be said, even when she goes to the BBoW, and that's when she gets angry at her monster.
When she got off the bus at school, her teacher said, she was in a bad mood already. Something was wrong, that much was clear, but she wasn't able to tell them exactly what. She was able to tell them that she didn't feel well, but she was struggling to tell them exactly why.
Finally, they figured out that she had a headache. They figured it out because she told the school nurse, in her own way.
She had the nurse put a band-aid on her head.
Well, there you go. Communication.
I've seen it so many times, I've watched her work her way around communications obstacles in different ways, sometimes imaginative and sometimes crude but always effective. It's a wonder to watch, fascinating to see how her brain works.
The last story in my book takes place a couple of months ago, when we were escaping the heat at one of those little play areas at the mall. Schuyler was confronted by a mean little girl who insisted on bullying her and the other kids by constantly occupying the same space that they were trying to play in. Julie and I very intentionally stayed back to let her figure it out by herself.
The mean girl had two sisters in on the fun with her, but she did most of the bullying, calling other kids names and pushing them around. Schuyler refused to budge, however. At first she tried to just ignore the mean girls, but that only enraged them.
Two things happened that convinced us that even if it wasn't how we'd choose for her confrontations to go down, we nevertheless could see that Schuyler was going to be okay.
The first thing was the worst, and happened before we could intervene. The mean girl hit Schuyler hard, on the shoulder. Before we could stand up and go over to them or even say a word, in no more time than it took for the windup, in fact, Schuyler quite simply hit the girl right in the middle of her face. And that was it. She dispensed what she saw as justice, and that was that.
The mean girl was so surprised that for a moment she didn't say anything. Then she started yelling in Schuyler's face.
"You can't talk! You're crazy! You're STUPID!"
Schuyler looked at her for just a moment, weighed her options (which were few, particularly without her BBoW), then leaned into the girl's face, her fists balled at her side, opened her mouth and howled like an animal. The girl was so shocked that she just walked away.
I'd like it to be different. I'd love for things to be any way other than this. But I suppose Schuyler doesn't have time for sentimentality or best practices or whatever. She's a sweet kid and the most loving human being I have ever known, in a world where frankly, love is almost always suspect.
But when she has to be, she's also the best pragmatist I know. Sometimes, all you get is a howl. I see that and I rage against the injustice. Schuyler sees it, and she howls, without hesitation. I'm proud of her for that.
One quick note, while I'm jabbering away.
Because I am generally agreeable to being thought of as swell, I thought I'd share something an old friend of mine wrote about me. It's actually been a few years since I've spoken to Sari. She disappeared for a long time and so I assumed she'd joined some radical lesbian terrorist group. (I'm not sure whether I'm glad or sorry that she didn't.) She's one of those friends with whom the bonds are there and just waiting to be picked back up like no time at all has passed. I'm glad she's back.
Anyway, thank you, Sari. I like that she calls me "the last of the true gentlemen on earth". It almost makes up for that photo. Look how fat I was back then. Man.
September 12, 2006
The very first thing I plan to do when I get my advance for the book is buy Klops for Schuyler.
Well, come on. Go look at their other creations and tell me they aren't MADE for Schuyler. Look at Klong, and the Yeti. Her little mind might actually explode.
I just wrote to them to ask if they do commissions. I was thinking just one, for Schuyler, but who knows? I could have the industry's first special needs parenting book with a plush doll tie-in. The possibilities boggle the mind.
Schuyler's monster, indeed.
(Okay, back to work...)
September 11, 2006
Originally uploaded by Citizen Rob.
Well, okay. I guess I can go public now.
(from Publishers Weekly, 9/11/2006 - Deals)
Blogger Robert Rummel-Hudson's life was transformed when his daughter, Schuyler, was diagnosed with an extremely rare neurological disorder called Congenital Bilateral Perisylvian Syndrome (only several hundred cases have been identified worldwide). He began writing about his experiences in an online journal (belovedmonsterandme.blogspot.com) and will now publish his memoir, Schuyler's Monster, with St. Martin's Press; Sheila Curry Oakes acquired world rights from agent Sarah Jane Freymann. Schuyler, now seven, is nonverbal but communicates with the assistance of an electronic device. Rummel-Hudson will ruminate on the struggle with a child's disability while touching on larger issues of family, love and fatherhood. St. Martin's plans a winter 2008 publication.
September 4, 2006
Imagine learning your letters. Imagine having to learn the sounds that they make, sounds they make for everyone but you. Imagine then having to take those sounds, alien to you in any real, meaningful way, and put them together into words. THEN imagine having to take those words and deconstruct them in your head into the sounds that you can only hear and never make, and use the letters that you have learned to construct those words. Imagine having a teacher say a word to you, sounding it out, and you sitting in a class surrounded by other, neurotypical kids your age who can then put all these pieces together in such a way that it makes perfect sense to them, but will never be able to make sense in a tangible way to you.
Spelling has been challenging for Schuyler. We work with her on it every night, taking the list of words for that week's test and drilling it. We sound it out for her and she types it out, not on her device but on a computer keyboard, because that's what they use in her mainstream first grade class. It's hard for her to write; in addition to stealing her consonants and rendering her non-verbal, her monster fumbles her clumsy little hands, too. So she uses a computer keyboard, and I think that's fine. She's getting quick on her device, but she needs to be able to use the tools of the speaking world, too.
It's frustrating. She tries so hard, and when she can't grasp it because the sounds are hard for her to distinguish, it's easy to lose hope. This has been one of the few times that her condition has caused her real anxiety, and it's heartbreaking. She tries, and when she fails, she loses her focus. I have been telling her that she has to try harder than everyone else in her class. I don't tell her why, because how do you tell a six year-old that she's broken?
Besides, she already knows. She may not care very often, and she's certainly more positive about it than anyone around her, but she knows. Better than anyone, I suspect.
After a couple of weeks with dismal test scores, and after a week of hard drills with her that didn't seem to go anywhere but frustration, we were happily surprised to learn on Friday that she had scored seven out of ten correctly on her test, including the harder words.
I think she simply got tired of the frustration. In her head, I believe she said "Oh, screw this," knocked her monster out of the way and figured it out. It's too early to say whether or not she's really got this down or if she just had a good day, but I think it would be hard for her to "accidentally" spell words correctly. I'm hopeful.
Schuyler clearly has a learning disorder, that's a no shitter. Put a strip of duct tape over your own mouth and leave it there until the day you die, and see how well you grasp the mechanics of language. One unknown issue was always whether or not CBPS was going to take the same bite out of her that it does other CBPS kids.
Schuyler's monster has two ugly stepsisters that loom over our thoughts and fears: seizures and retardation. Seizures we won't know about until (and if) they arrive. I think it is becoming clear, however, that although Schuyler may never be one of the world's great thinkers, she is not mentally retarded. She's clever, she's determined, and most of all she's tenacious. She doesn't like to be told what to do, a trait that I encourage in her every chance I get, so she has to decide she wants to do something first. And then? She just fucking DOES it.
That's Schuyler's nature, and she comes by it honestly. I have no idea how smart she really is, not yet, but I also don't think it matters. I'm not all that smart, either, and I'm doing okay. She's going to do okay, too.