This is Schuyler.
She is holding this week's spelling test. The words printed on the page are hers, from her device as she took the quiz.
Aside from a soccer ball sticker and a "Toadally Awesome!" stamp, it has no other markings on it.
That's because once again, she received a perfect score.
This is Schuyler. Two years ago, we were told that she was not intellectually capable of using this AAC device, the Big Box of Words; it was deemed, in the school district's final report before she actually acquired the device, to be "educationally unnecessary".
This is Schuyler. Two years ago, and also another two years before that, we were told that her future lay in general special education classes. We were informed that she was most likely suffering from some level of mental retardation and would likely remain in the care of special education until the day she was old enough to become Our Problem rather than Their Problem.
This is Schuyler. She is learning to use the BBoW on its highest setting, its most advanced vocabulary. She's already better at it than we are. She likes to show off on it and is already embracing the new vocabulary possibilities. Also, it has more dinosaurs.
There's a word that is forbidden in this home. It's a word that sounds very kind and nurturing, like something you might hear on Sesame Street, a word that spawned the Holland thing. We've been handed this word over and over again, and we reject it, completely. The word is a cage, plain and simple, and it's a cage we'd be putting Schuyler into if we embraced it.
ACCEPTANCE.
We don't accept a thing, because Schuyler doesn't. She never wants comfort or pity or acceptance. She has things to say, and she wants to say them. She wants to live a life as close as she can to the ones you and I live, not as a "special little champ" or "perfect just the way she is" or whatfucking ever, but as a punky, funny, smart and troublemaking little girl. She is Chaos in Chuck Taylors. And if you get in her way, she'll knock you over, because she's lost enough time and she knows it. She's flawed, more than some but not so much as others, and she knows that, too, and she doesn't shed a tear about it. While I worry and get sad, she rolls up her sleeves and gets to work.
Acceptance wouldn't be for her. It would be for us, for our fears of failure. I can't speak for any other parents out there, of children who are broken or exceptional or shy or hyperactive or just plain weird or whatever. But for myself, I was blessed from the very beginning because while I had a great deal of fear, Schuyler had none. She has none today.
And she has no use for Holland, either.
April 28, 2007
April 27, 2007
"There you could look at a thing monstrous and free..."
In a moment of seemingly random generosity, two different readers sent Schuyler items off her Amazon list, and all but one of the items were related to her love of monsters.
One of them blew her mind. I wish I'd had a camera ready when I walked into the living room with a purple dragon puppet (with unseen controls) on my shoulder. I wish you could see her expression when she said hello to it and it answered her.
I had a rough week. I needed that.
For the first time, Schuyler is going to write her own thank you notes.
And life goes on. Perfect moments on a spectacularly imperfect canvas.
I know it's easy to think that because things are going well for Schuyler and for me professionally, there would be nothing but happy times. I can't imagine for a moment why that isn't the case. The world is supposed to make sense, it's supposed to be ruled by logic and a sequence of events and behaviors that are connected and rational, and yet it so rarely works out that way.
When things get confusing like they are now, I run to the only person in the world who has never disappointed me and who never sees me as weak or stupid or ugly. Or broken.
Schuyler and I are broken, but we never see each other that way. We play with toy monsters and leave the real ones outside the door for just a little while. I suppose everyone's broken, really. And like that line in Schuyler's favorite movie, the thing we come to learn about ourselves is our undying ability to destroy the things we love.
One day, Schuyler and I will damage each other, too. But for now, I'm taking her to the zoo. The hurt and the chaos of this grand rough world will just have to fucking wait.
One of them blew her mind. I wish I'd had a camera ready when I walked into the living room with a purple dragon puppet (with unseen controls) on my shoulder. I wish you could see her expression when she said hello to it and it answered her.
I had a rough week. I needed that.
For the first time, Schuyler is going to write her own thank you notes.
And life goes on. Perfect moments on a spectacularly imperfect canvas.
I know it's easy to think that because things are going well for Schuyler and for me professionally, there would be nothing but happy times. I can't imagine for a moment why that isn't the case. The world is supposed to make sense, it's supposed to be ruled by logic and a sequence of events and behaviors that are connected and rational, and yet it so rarely works out that way.
When things get confusing like they are now, I run to the only person in the world who has never disappointed me and who never sees me as weak or stupid or ugly. Or broken.
Schuyler and I are broken, but we never see each other that way. We play with toy monsters and leave the real ones outside the door for just a little while. I suppose everyone's broken, really. And like that line in Schuyler's favorite movie, the thing we come to learn about ourselves is our undying ability to destroy the things we love.
One day, Schuyler and I will damage each other, too. But for now, I'm taking her to the zoo. The hurt and the chaos of this grand rough world will just have to fucking wait.
April 24, 2007
Return of the fancy
Tomorrow, I'm going to spend the day in Austin pretending to be a fancy pants author, visiting some book stores to promote my fancy pantsedness. I can't tell you how nice it'll be to get out of Dallas, even just for the day. My pants, they have not been feeling so fancy lately.
If you are a fancy pants media person in Austin and are thinking of attending the very first ever fancy pants mediabistro.com All-Media Party in Austin, I hope to see you there.
Remember, wear your fancy pants. (Well, dress for the party is casual, so your pants need only be fancy in your BRAIN...)
If you are a fancy pants media person in Austin and are thinking of attending the very first ever fancy pants mediabistro.com All-Media Party in Austin, I hope to see you there.
Remember, wear your fancy pants. (Well, dress for the party is casual, so your pants need only be fancy in your BRAIN...)
April 22, 2007
Dispatches from inside monster-occupied territory
One of the things we'd sort of come to accept about Schuyler's condition was that the effects of polymicrogyria on her fine motor skills meant that handwriting for her was always going to be difficult, if not impossible. For a long time, her writing was awkward to the point of being unreadable, which was less of a problem once she started to do well on the Big Box of Words. It was generally accepted that Schuyler will almost certainly never be able to speak and probably not be able to write, either, but with the BBBoW, that was fine. It was one more aspect of PMG that she might not be able to knock down, but with the right tools, she could just walk around it instead.
One of Schuyler's defining characteristics, however, is her stubborn refusal to give up on something. That's not going to be a surprise to anyone who's been reading about her for even just a little while. When something defeats her, you can see it in her eyes, beneath her cheerful shrug of acceptance. Outwardly, she seems to say "Okay, whatever, no big deal." Watch carefully, however, and you'll see that last lingering glance. "I'll be back to kick your ass later." And she always does.
In the past month or two, her handwriting has suddenly improved dramatically. She loves to spell, and she loves to write. (As an author, you have no idea how happy that makes me, even if she ends up writing a book one day saying how full of crap I was.) When she woke me up this morning, the first thing she did was start writing notes. The first was this one, "Love mommy and daddy". The second was a note demanding cereal for breakfast.
It's clumsy, sure, and when she runs out of space, she continues mid-word on the next line. But damn it, she's writing, and we can read it, and that's just one more thing we were told she'd probably never do.
It may not look like much to you, but to us, it's like professional calligraphy.
One of Schuyler's defining characteristics, however, is her stubborn refusal to give up on something. That's not going to be a surprise to anyone who's been reading about her for even just a little while. When something defeats her, you can see it in her eyes, beneath her cheerful shrug of acceptance. Outwardly, she seems to say "Okay, whatever, no big deal." Watch carefully, however, and you'll see that last lingering glance. "I'll be back to kick your ass later." And she always does.
In the past month or two, her handwriting has suddenly improved dramatically. She loves to spell, and she loves to write. (As an author, you have no idea how happy that makes me, even if she ends up writing a book one day saying how full of crap I was.) When she woke me up this morning, the first thing she did was start writing notes. The first was this one, "Love mommy and daddy". The second was a note demanding cereal for breakfast.
It's clumsy, sure, and when she runs out of space, she continues mid-word on the next line. But damn it, she's writing, and we can read it, and that's just one more thing we were told she'd probably never do.
It may not look like much to you, but to us, it's like professional calligraphy.
April 21, 2007
Tiny paleontology
Schuyler has more to tell you this morning...
-----
My dinosaur is orange and yellow and green. She has red eyes. She roars and eats little dinosaurs. She has friends. I love dinosaur. Her name is Lana. My Dragon is name Zoe. My dinosaur is a tyrannosaurus rex! Good-bye to daddies friends!
-----
(Just so you know, we looked on this stupid thing for five minutes, trying to find how to do an apostophe s before she gave up and just went with the plural. The BBoW knows how to keep its secrets. On the other hand, she knew exactly where to find "tyrannosaurus rex". Go figure.)
-----
My dinosaur is orange and yellow and green. She has red eyes. She roars and eats little dinosaurs. She has friends. I love dinosaur. Her name is Lana. My Dragon is name Zoe. My dinosaur is a tyrannosaurus rex! Good-bye to daddies friends!
-----
(Just so you know, we looked on this stupid thing for five minutes, trying to find how to do an apostophe s before she gave up and just went with the plural. The BBoW knows how to keep its secrets. On the other hand, she knew exactly where to find "tyrannosaurus rex". Go figure.)
April 20, 2007
Another Inconvenient Truth
Before the fluttering of TV-ready flags and the patriotic, outraged sputtering gets too loud for anyone to think clearly, let's hear it once straight up.
The thumping has already begun, the wailing of "They don't support the troooooops!", and if past experience is any indication, the Democrats will soon be issuing "clarifications" about what the senator really meant and trying to water down what was actually a much-needed stiff drink.
So before Senator Reid ascends the wobbly tower of public relations Jell-o, let me throw in my own opinion.
He's right. The war is lost.
It was lost long ago. Maybe from the very first day.
It wasn't lost by the troops. It was lost very much in spite of the troops.
It was lost by old men in Washington, D.C.
If they can resist the indignant cries from that small but loud percentage of the extreme right who would unconditionally support the president even if he shot up a college campus or ate a puppy on television, the Democrats might just turn back into a party with some measure of leadership.
They just need to know one thing most of all. Here's that thing, the one they might not completely know because no one on either side of the aisle seems to be able to hear the voice of the People (with a big P) very clearly,
We already know the war is lost.
We may be stupid, easily distracted, American Idol-watching children, but we know the war is lost. Speak what's true, and we'll listen, we'll listen because we already know it, even if we're not all ready to say it. We need leaders to say it and to actually lead us out of the dark.
I've had my heart broken in the past by Democrats who stood up and spoke hard truths, only to weasel and wiggle back across the line when the heat got turned up. But even knowing how it usually turns out, I do still so love that brief moment when the party of my idealistic youth stands up like an aging bull ready to take one last futile stab at the matador, forgetting for just that moment of clarity to fear the butcher's block and the Hamburger Helper yet to come.
Support the troops with more than a ribbon magnet on your SUV. Get our people out of there.
"I believe myself that the secretary of state, secretary of defense and -- you have to make your own decisions as to what the president knows -- (know) this war is lost and the surge is not accomplishing anything as indicated by the extreme violence in Iraq yesterday."
-- Senate Majority Leader Harry Reid, April 19, 2007
The thumping has already begun, the wailing of "They don't support the troooooops!", and if past experience is any indication, the Democrats will soon be issuing "clarifications" about what the senator really meant and trying to water down what was actually a much-needed stiff drink.
So before Senator Reid ascends the wobbly tower of public relations Jell-o, let me throw in my own opinion.
He's right. The war is lost.
It was lost long ago. Maybe from the very first day.
It wasn't lost by the troops. It was lost very much in spite of the troops.
It was lost by old men in Washington, D.C.
If they can resist the indignant cries from that small but loud percentage of the extreme right who would unconditionally support the president even if he shot up a college campus or ate a puppy on television, the Democrats might just turn back into a party with some measure of leadership.
They just need to know one thing most of all. Here's that thing, the one they might not completely know because no one on either side of the aisle seems to be able to hear the voice of the People (with a big P) very clearly,
We already know the war is lost.
We may be stupid, easily distracted, American Idol-watching children, but we know the war is lost. Speak what's true, and we'll listen, we'll listen because we already know it, even if we're not all ready to say it. We need leaders to say it and to actually lead us out of the dark.
I've had my heart broken in the past by Democrats who stood up and spoke hard truths, only to weasel and wiggle back across the line when the heat got turned up. But even knowing how it usually turns out, I do still so love that brief moment when the party of my idealistic youth stands up like an aging bull ready to take one last futile stab at the matador, forgetting for just that moment of clarity to fear the butcher's block and the Hamburger Helper yet to come.
Support the troops with more than a ribbon magnet on your SUV. Get our people out of there.
April 17, 2007
Large things made small
You know, when there's a huge new event in the world, I always have to pause and see if I have anything to say about it here. After yesterday's events in Virginia, I didn't think I did. It was obviously as upsetting to me as it was to the rest of the country and the world, but that didn't mean I had anything particularly unique to say about it. I didn't think I had a personal reaction to offer about the effect of such large, remote events on my own small world or that of my family.
But then, I didn't expect to feel such a heavy sense of unease, such a stone in the pit of my stomach, as Schuyler got on her school bus this morning. I never felt such an urge to go outside and wave the bus away like I did today.
What a world we live in. So it goes.
Update: I just watched a CNN reporter completely lose his composure while he described the local emergency officials removing the bodies from Norris Hall as the dead students' cell phones were ringing and buzzing, their frantic parents tried to make sure that they were okay. I don't even know what to do with that image.
But then, I didn't expect to feel such a heavy sense of unease, such a stone in the pit of my stomach, as Schuyler got on her school bus this morning. I never felt such an urge to go outside and wave the bus away like I did today.
What a world we live in. So it goes.
Update: I just watched a CNN reporter completely lose his composure while he described the local emergency officials removing the bodies from Norris Hall as the dead students' cell phones were ringing and buzzing, their frantic parents tried to make sure that they were okay. I don't even know what to do with that image.
April 15, 2007
This could be the start of something interesting...
Okay, so the thing we discovered in our Box Class a few days ago? The one that I said I was just going to spring on you? Well, we learned how to interface directly between the BBoW and our laptops. This means that Schuyler can now send emails, input into Word documents and, well, blog. Good thing, too, since she wants to tell you about her new friend...)
-----
my Dragon eats elephants . My Dragon is green . I love Dragon . she can fly! She is my friend.
-----
(Note: Yep, it's apparently a chickie dragon. Well, of course it is.)
-----
my Dragon eats elephants . My Dragon is green . I love Dragon . she can fly! She is my friend.
-----
(Note: Yep, it's apparently a chickie dragon. Well, of course it is.)
April 14, 2007
April 12, 2007
April 11, 2007
Love your pets
So I got a surprise comment left on a previous entry, Things to do in Plano, from none other than the brother of the monkey guy himself.
Believe me, you've missed most of the story on this one. For the whole truth, and to see why you've all been suckered into taking part in character assassination of a really nice man, go check out www.savedarwin.com.
In the interest of fairness, you can go check out the rest of the story. I will say that as I read what's on the site, I honestly think there are a lot of holes in the story, but you can judge for yourself.
(Perhaps this might be a good time to read up on why having a pet monkey is a phenomenally bad idea. I haven't read the whole site, so I don't know if it addresses something I've always heard, that little tiny boy monkeys will jump up on your shoulder and have sex with your ear. Maybe that's best left a mystery.)
So here you go. Let it never be said that I don't provide both sides of the story. Or that I'm not here to meet all your scandalous monkey love needs. You're welcome.
April 8, 2007
Fragile Innocence
Julie ran across a passage in a book she's reading, James Reston, Jr.'s Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey .
Reston writes about his daughter, Hillary, who was stricken at the age of eighteen months with a high fever that left her significantly (and mysteriously) impaired. His descriptions of the onset of her seizures is enough to keep us up at night. But it was this observation that resonated with Julie, and with me, enough to share with you.
We haven't finished the book yet, but so far, it has given us a sobering and gripping look at a family dealing with another child's monster, one that is much bigger and more sinister but vaguely familiar all the same.
Reston writes about his daughter, Hillary, who was stricken at the age of eighteen months with a high fever that left her significantly (and mysteriously) impaired. His descriptions of the onset of her seizures is enough to keep us up at night. But it was this observation that resonated with Julie, and with me, enough to share with you.
When we moved to Washington that summer, the coldness and embarrassment of strangers were evident. With Hillary's yips and her strange gait and her impulsive gestures and her hovering parents, it was clear to any passerby that something was wrong with her. Strangers turned away or looked at her curiously as if she were an exotic creature from Mars or the circus. As we met new people, their reaction to Hillary, whether inviting or embarrassed, became a litmus test of whether we chose to pursue the relationship. In our minds we knew this to be unfair, and later we came to realize, in our denseness, that good and well-intentioned people often simply did not know how to react. But we could not help it. It meant that our circle of friends shrank to a precious few.
We haven't finished the book yet, but so far, it has given us a sobering and gripping look at a family dealing with another child's monster, one that is much bigger and more sinister but vaguely familiar all the same.
Reminder
I should probably post something like this every now and then, especially as we get closer to the book release.
Coffee Talk
Sometimes we do things for Schuyler that help her along in the world. We make decisions and sacrifices that turn out to be the right ones and which propel her down smooth, bright roads.
Sometimes she does it herself. Most of the time, she pushes herself down those roads.
The other day, we took Schuyler to a local mall so she could run around and play without being subjected to (or subjecting us to) fried "foods", cheap Happy Meal toys or demented clowns. At this particular semi-fancy mall, there is a huge play area that Schuyler loves. It is one of those new trendy playgrounds made of squishy giant forms that the kids can climb around on and fall off of without incurring litigation.
In the case of this particular play area, the theme was "giant breakfast". A twenty-foot plate held a steak the size of a queen-sized mattress and two wagon wheel-sized eggs. A slice of grapefruit was topped by a cherry the size of a basketball. It is a very very cool playground.
Schuyler was having her usual great time on the Big Breakfast; I think it's probably her favorite place to play, with the possible exception of the previously mentioned and oft-requested Clown House. As she tends to do, it wasn't long before she'd made some friends. In this case, it was two sisters who wanted to run around the giant plate, alternately chasing and being chased by Schuyler, and their brother, who kept us as best as he could despite a cast on one leg.
After exhausting themselves, the four of them climbed into the giant, jacuzzi-sized cup of coffee and began the whole "So who are you and what's your scene?" discussion. Before it got very far, Schuyler ran over to us and grabbed her Big Box of Words.
What happened next stopped us in our tracks. And by us, I don't mean just Julie and I, but rather every parent in the area. We all sat, silently mesmerized, as Schuyler began demonstrating her device and asking questions of all the kids present. The four turned to six, and then eight little kids crowded around the giant cup, fascinated by this hard-playing, hard-laughing little girl with the robot voice. All the adults watched in wonder as a crowd formed around one little girl. I think they worried about the Revolution of the Small beginning at that moment.
At the center of it all was Schuyler. She asked everyone their names and how old they were, and she answered their questions as best as she could. She led a cyborgian rendition of "Old Macdonald Had a Farm". And when one little girl repeatedly tried to reach over and take the BBoW, Schuyler told her "No." and sternly pointed at the ground outside the cup until the little girl glumly climbed out and skulked away.
Banished by the Cyborg Princess. It's a harsh world in Schuyler's Coffee Cup.
For a full twenty minutes, Schuyler held court, and kids came and went from her audience, aside from the siblings she'd befriended, who never left or took their eyes of off of her. It was only after the kids' mother came up nervously and started checking them out that I approached them. I could see at a glance, as is often the case, that while the kids were all fascinated by and even envious of Schuyler and the BBoW, their mom was a little freaked out.
That's how it usually happens. Almost every time, actually. If someone gets spooked by Schuyler or her monster, it's almost always another adult, as if their kid might catch whatever she has. Kids her age tend to absorb what's different, make their quick adjustments in order to facilitate play, and them go on. Can't talk? Well then, let's run around and howl instead.
When I came over to check on her, Schuyler looked up at me and smiled. I could tell she was as happy at that moment as she's ever been. Then she turned to her new friends, lifted the BBoW over her head without looking at me until I dutifully took it from her, and then she leapt out of the cup and ran away, off to conquer the giant bacon.
Her new gang of transfixed friends followed close on her heels. They didn't leave her side until their skittish mother finally took them home, and their eyes followed Schuyler until they were out of sight.
She was already making a new friend by then.
Sometimes she does it herself. Most of the time, she pushes herself down those roads.
The other day, we took Schuyler to a local mall so she could run around and play without being subjected to (or subjecting us to) fried "foods", cheap Happy Meal toys or demented clowns. At this particular semi-fancy mall, there is a huge play area that Schuyler loves. It is one of those new trendy playgrounds made of squishy giant forms that the kids can climb around on and fall off of without incurring litigation.
In the case of this particular play area, the theme was "giant breakfast". A twenty-foot plate held a steak the size of a queen-sized mattress and two wagon wheel-sized eggs. A slice of grapefruit was topped by a cherry the size of a basketball. It is a very very cool playground.
Schuyler was having her usual great time on the Big Breakfast; I think it's probably her favorite place to play, with the possible exception of the previously mentioned and oft-requested Clown House. As she tends to do, it wasn't long before she'd made some friends. In this case, it was two sisters who wanted to run around the giant plate, alternately chasing and being chased by Schuyler, and their brother, who kept us as best as he could despite a cast on one leg.
After exhausting themselves, the four of them climbed into the giant, jacuzzi-sized cup of coffee and began the whole "So who are you and what's your scene?" discussion. Before it got very far, Schuyler ran over to us and grabbed her Big Box of Words.
What happened next stopped us in our tracks. And by us, I don't mean just Julie and I, but rather every parent in the area. We all sat, silently mesmerized, as Schuyler began demonstrating her device and asking questions of all the kids present. The four turned to six, and then eight little kids crowded around the giant cup, fascinated by this hard-playing, hard-laughing little girl with the robot voice. All the adults watched in wonder as a crowd formed around one little girl. I think they worried about the Revolution of the Small beginning at that moment.
At the center of it all was Schuyler. She asked everyone their names and how old they were, and she answered their questions as best as she could. She led a cyborgian rendition of "Old Macdonald Had a Farm". And when one little girl repeatedly tried to reach over and take the BBoW, Schuyler told her "No." and sternly pointed at the ground outside the cup until the little girl glumly climbed out and skulked away.
Banished by the Cyborg Princess. It's a harsh world in Schuyler's Coffee Cup.
For a full twenty minutes, Schuyler held court, and kids came and went from her audience, aside from the siblings she'd befriended, who never left or took their eyes of off of her. It was only after the kids' mother came up nervously and started checking them out that I approached them. I could see at a glance, as is often the case, that while the kids were all fascinated by and even envious of Schuyler and the BBoW, their mom was a little freaked out.
That's how it usually happens. Almost every time, actually. If someone gets spooked by Schuyler or her monster, it's almost always another adult, as if their kid might catch whatever she has. Kids her age tend to absorb what's different, make their quick adjustments in order to facilitate play, and them go on. Can't talk? Well then, let's run around and howl instead.
When I came over to check on her, Schuyler looked up at me and smiled. I could tell she was as happy at that moment as she's ever been. Then she turned to her new friends, lifted the BBoW over her head without looking at me until I dutifully took it from her, and then she leapt out of the cup and ran away, off to conquer the giant bacon.
Her new gang of transfixed friends followed close on her heels. They didn't leave her side until their skittish mother finally took them home, and their eyes followed Schuyler until they were out of sight.
She was already making a new friend by then.
April 6, 2007
A Prayer for My Daughter
I have walked and prayed for this young child an hour
And heard the sea-wind scream upon the tower,
And under the arches of the bridge, and scream
In the elms above the flooded stream;
Imagining in excited reverie
That the future years had come,
Dancing to a frenzied drum,
Out of the murderous innocence of the sea.
From "A Prayer for My Daughter"
by William Butler Yeats
April 4, 2007
Things to do in Plano
Sometimes it pays to read your local news.
A man right here in Plano, Texas had his monkey taken away from him, and was then accused of sending monkey porn to his incarcerated pet. Or maybe it wasn't monkey porn, says the guy who originally made the allegation but is now reconsidering his opinion. Maybe it was just the heartfelt expression of a guy who loves his monkey.
I really do think that this story ran in the paper for no other reason than to serve as an excuse to print the following quote:
"I don't have sex with my monkey." It's my personal belief that if you find yourself in the position where you feel it necessary to make that statement to the news media, you might just have a serious image problem. Also, you sound totally guilty.
A man right here in Plano, Texas had his monkey taken away from him, and was then accused of sending monkey porn to his incarcerated pet. Or maybe it wasn't monkey porn, says the guy who originally made the allegation but is now reconsidering his opinion. Maybe it was just the heartfelt expression of a guy who loves his monkey.
I really do think that this story ran in the paper for no other reason than to serve as an excuse to print the following quote:
"I don't have sex with my monkey. That's absolute crap," Mr. Crawford said. "Why would I do that? I gave him an audiotape, but it didn't have anything like that on it. It said, 'I'm coming home, I'm coming to get you. Daddy's coming, he's coming to get you,' " Mr. Crawford said.
"I don't have sex with my monkey." It's my personal belief that if you find yourself in the position where you feel it necessary to make that statement to the news media, you might just have a serious image problem. Also, you sound totally guilty.
April 1, 2007
Shepherds of the Broken
I'd like to find a new term for special needs parents, one that doesn't include the hated words "special needs". I have no idea what, though. "Shepherds of the Broken", perhaps.
I don't speak for all or even most of my fellow shepherds. But judging from many of the people I've met, both online and in this grand rough world, I know I speak for some. I speak for some of the parents of the broken who don't get divorced and don't give over the care of our broken children to the state or to someone else seemingly more qualified than our clumsy, stupid selves to help our kids. We are shepherds in the storm. We stand, dumb but firm, against the winds, and we endure.
Shepherds of the broken engage in acts of compromise, often in ways that are hard to explain and which perhaps don't make sense to the neurotypical world.
We find that we stand apart from other parents, that the things that thrill us have a whiff of desperation about them, such as when our broken children achieve things that are both commonplace and yet sometimes seemingly out of reach. When I discovered that Schuyler received a perfect score on her spelling test on Friday, like any other first grade child might, how do I explain how both my joy and a little bit of sadness fed off of the low expectations she's battled in the past, where the very device she uses to take that test was considered to be out of her intellectual reach?
And yet, there are fellow shepherds out there who celebrate when their child survives another year, another month. When I write about Schuyler's struggles, so much less terrifying than theirs, they don't necessarily look at me with pure joy, but perhaps with something very gently tainted with contempt. And I don't look at them with sympathy alone, but also fear, and an impulse to step back from their world.
The most surprising thing I've discovered about being a shepherd of the broken are the limits of community and empathy amongst fellow shepherds. I've had tense discussions with other parents that have degenerated into "you think YOU have problems", as if our broken children were competing to see who had the most monstrous of monsters. I have discovered over the years and particularly of late how lonely our shepherding lives can be. Standing outside a neurotypical world, we also stand apart from each other. Most of all, we find ourselves standing apart from our spouses and families.
Yes, shepherds of the broken live in a world of compromise. The divorce rate among us is higher than the general population, but for a good number of us, splitting up is an unworkable option. We learn to forgive transgressions so long as they are against each other and not our broken children. We learn to accept that our relationships are bound in ways that the unbroken can never completely grasp. We're alone in profound ways, working with the one person in the world who can understand what we're going through and yet also the one person who can't ease our sorrow, steeped as they are within their own. Our fellow, spousal shepherds have their own pain. Locked together in a relationship that becomes mostly, then entirely, about our shepherding duties, we sometimes turn to religion for help, or we try to find time to pretend that we're just like the rest of you, but mostly we turn inwards, to the space that is ours alone. We labor together as partners, as caregivers and educators and advocates, and perhaps eventually that's all we become to each other. And the weirdest part of that is how okay we are with it, because as lonely as that kind of relationship can be, it is that partnership against the monster that we depend on all the time. It's the one thing that we can't do alone.
Shepherds of the broken try to build lives like the rest of you. We can't expect you to completely understand how we live and how the rules that govern much of society stopped working for us a long time ago. It's not just our children who stand apart. We shepherds of the broken find ourselves unable to build relationships. Our marriages and families are eaten by our children's monsters and the people we reach for in the unbroken world are unable to reach back.
If there is one thing that Julie and I and countless other parents have found about having a broken child, it is that in the end, it can be the loneliest life in the world. It can be like an emotional limbo.
And yet.
Yet through it all, Schuyler stands at the center, and when every other relationship falters, her love is the light that guides me and the warmth that sustains my life. She is like a star, from whose gravitational pull I can never escape but whose very existence gives life and purpose. She is both goddess and jailer.
In my old journal and also in my book, I quote a song by Little Willie John that I think perfectly describes this world of the shepherd of the broken. I think perhaps it's time to do so here, too.
I don't speak for all or even most of my fellow shepherds. But judging from many of the people I've met, both online and in this grand rough world, I know I speak for some. I speak for some of the parents of the broken who don't get divorced and don't give over the care of our broken children to the state or to someone else seemingly more qualified than our clumsy, stupid selves to help our kids. We are shepherds in the storm. We stand, dumb but firm, against the winds, and we endure.
Shepherds of the broken engage in acts of compromise, often in ways that are hard to explain and which perhaps don't make sense to the neurotypical world.
We find that we stand apart from other parents, that the things that thrill us have a whiff of desperation about them, such as when our broken children achieve things that are both commonplace and yet sometimes seemingly out of reach. When I discovered that Schuyler received a perfect score on her spelling test on Friday, like any other first grade child might, how do I explain how both my joy and a little bit of sadness fed off of the low expectations she's battled in the past, where the very device she uses to take that test was considered to be out of her intellectual reach?
And yet, there are fellow shepherds out there who celebrate when their child survives another year, another month. When I write about Schuyler's struggles, so much less terrifying than theirs, they don't necessarily look at me with pure joy, but perhaps with something very gently tainted with contempt. And I don't look at them with sympathy alone, but also fear, and an impulse to step back from their world.
The most surprising thing I've discovered about being a shepherd of the broken are the limits of community and empathy amongst fellow shepherds. I've had tense discussions with other parents that have degenerated into "you think YOU have problems", as if our broken children were competing to see who had the most monstrous of monsters. I have discovered over the years and particularly of late how lonely our shepherding lives can be. Standing outside a neurotypical world, we also stand apart from each other. Most of all, we find ourselves standing apart from our spouses and families.
Yes, shepherds of the broken live in a world of compromise. The divorce rate among us is higher than the general population, but for a good number of us, splitting up is an unworkable option. We learn to forgive transgressions so long as they are against each other and not our broken children. We learn to accept that our relationships are bound in ways that the unbroken can never completely grasp. We're alone in profound ways, working with the one person in the world who can understand what we're going through and yet also the one person who can't ease our sorrow, steeped as they are within their own. Our fellow, spousal shepherds have their own pain. Locked together in a relationship that becomes mostly, then entirely, about our shepherding duties, we sometimes turn to religion for help, or we try to find time to pretend that we're just like the rest of you, but mostly we turn inwards, to the space that is ours alone. We labor together as partners, as caregivers and educators and advocates, and perhaps eventually that's all we become to each other. And the weirdest part of that is how okay we are with it, because as lonely as that kind of relationship can be, it is that partnership against the monster that we depend on all the time. It's the one thing that we can't do alone.
Shepherds of the broken try to build lives like the rest of you. We can't expect you to completely understand how we live and how the rules that govern much of society stopped working for us a long time ago. It's not just our children who stand apart. We shepherds of the broken find ourselves unable to build relationships. Our marriages and families are eaten by our children's monsters and the people we reach for in the unbroken world are unable to reach back.
If there is one thing that Julie and I and countless other parents have found about having a broken child, it is that in the end, it can be the loneliest life in the world. It can be like an emotional limbo.
And yet.
Yet through it all, Schuyler stands at the center, and when every other relationship falters, her love is the light that guides me and the warmth that sustains my life. She is like a star, from whose gravitational pull I can never escape but whose very existence gives life and purpose. She is both goddess and jailer.
In my old journal and also in my book, I quote a song by Little Willie John that I think perfectly describes this world of the shepherd of the broken. I think perhaps it's time to do so here, too.
My love, my love is a mountainside
So firm it can calm the tide
My love for you is a mountainside
It stands so firm it can calm the tide
That's why my love, my love is
A mountainside
My love, my love is an ocean's roar
So strong, so strong that I can't let you go
My love for you is an ocean's roar
It's grown so strong that I can't let you go
That's why my love, my love is
An ocean's roar
My love is longer than forever
And endless as the march of time
'Till ninety-nine years after never
In my heart you'll still be mine
Because my love
My love is a deep blue sea
So deep, so deep that I'll never be free
My love for you is a deep blue sea
It's grown so strong that I'll never be free
That's why my love, my love is
A deep blue sea
March 26, 2007
Eyes Wide Shut
I was watching The Today Show this morning because it was far too early for actual quality programming. There was a segment called "Let's Talk Motherhood" (because remember, on The Today Show, we all live in Fred Flintstone's America, where dads are too busy hunting mastadons to worry about parenting), and one poor put-upon mom was bemoaning her momly life.
Laundry? Cooking? Pushing a wheelchair or trying to keep her aspirating, disabled child from choking to death when she eats? No, this mom's burden is a child who apparently talks too much.
"Last night my daughter was reading something, and she just kept going on, and on, and on, and I went 'Ugh!' And she said, 'What's the matter? Are you tired of my reading?' And I'm like, 'No', but it's just like 'Whew!'"
Whew, indeed. If you'd really like to gain my sympathies, by all means, tell me how your kid never stops talking. No, please.
As I've mentioned before, I belong to a polymicrogyria (PMG) discussion group. I almost never post, however, mostly out of a weird sense of guilt. I have yet to read a post by another parent with a child who is better off than Schuyler, whose PMG mostly affects her speech so far. I read stories by parents whose kids are in wheelchairs or who require a feeding tube just to stay alive. Almost all of them have kids who suffer seizures. Every so often, but not as rarely as it should be, one will post that they lost their child, to a massive seizure or a choking incident or simply a quiet death in the night.
The thing about these posts, however, is that they are almost never complaining. If they're talking about seizures, it's to compare medications and treatment strategies with other parents, or simply to calm another parent going through some new manifestation of their child's monster. I posted there the first time Schuyler choked, and I'm sure that I'll be back when her first seizure hits. But for now, I mostly just read, silently thankful for Schuyler's good luck, within her bad luck.
The parents who have the most cause to complain also have the most reason to understand how much worse it could be. I've had people ask that fun hypothetical question, "If you could take away Schuyler's monster, would you?" It's not entirely hypothetical; I spend every day trying to do just that. If I can't take it away, I'll settle for cutting it down to size, muzzling its snout and blunting its claws.
But if I could go back in time and chose whether or not to have her, knowing ahead of time the world we'd be entering? That's easy. The first thirty-two years of my life were rehearsal. I started living for real when Schuyler was born. The angst I feel when I put her on the bus in the morning or the pain of watching her struggle to communicate with another kid who then makes fun of her when she runs off to play, that's the pain of living and the price I pay in order to have the privilege of walking through the world with her. She's the best person I know, hands down.
When I see a mother complaining on national television because her kid talks too much, fucking READS too much, I realize how insignificant that price is. I don't think you have to have a broken child in order to appreciate how fragile and amazing life can be. I just think you have to be paying attention.
If you read the things I write about life with Schuyler and you feel pity for us, then I'm just a shitty writer. If you read me and find yourself, against all logic and convention, feeling a little bit jealous, then I've gotten it right.
Laundry? Cooking? Pushing a wheelchair or trying to keep her aspirating, disabled child from choking to death when she eats? No, this mom's burden is a child who apparently talks too much.
"Last night my daughter was reading something, and she just kept going on, and on, and on, and I went 'Ugh!' And she said, 'What's the matter? Are you tired of my reading?' And I'm like, 'No', but it's just like 'Whew!'"
Whew, indeed. If you'd really like to gain my sympathies, by all means, tell me how your kid never stops talking. No, please.
As I've mentioned before, I belong to a polymicrogyria (PMG) discussion group. I almost never post, however, mostly out of a weird sense of guilt. I have yet to read a post by another parent with a child who is better off than Schuyler, whose PMG mostly affects her speech so far. I read stories by parents whose kids are in wheelchairs or who require a feeding tube just to stay alive. Almost all of them have kids who suffer seizures. Every so often, but not as rarely as it should be, one will post that they lost their child, to a massive seizure or a choking incident or simply a quiet death in the night.
The thing about these posts, however, is that they are almost never complaining. If they're talking about seizures, it's to compare medications and treatment strategies with other parents, or simply to calm another parent going through some new manifestation of their child's monster. I posted there the first time Schuyler choked, and I'm sure that I'll be back when her first seizure hits. But for now, I mostly just read, silently thankful for Schuyler's good luck, within her bad luck.
The parents who have the most cause to complain also have the most reason to understand how much worse it could be. I've had people ask that fun hypothetical question, "If you could take away Schuyler's monster, would you?" It's not entirely hypothetical; I spend every day trying to do just that. If I can't take it away, I'll settle for cutting it down to size, muzzling its snout and blunting its claws.
But if I could go back in time and chose whether or not to have her, knowing ahead of time the world we'd be entering? That's easy. The first thirty-two years of my life were rehearsal. I started living for real when Schuyler was born. The angst I feel when I put her on the bus in the morning or the pain of watching her struggle to communicate with another kid who then makes fun of her when she runs off to play, that's the pain of living and the price I pay in order to have the privilege of walking through the world with her. She's the best person I know, hands down.
When I see a mother complaining on national television because her kid talks too much, fucking READS too much, I realize how insignificant that price is. I don't think you have to have a broken child in order to appreciate how fragile and amazing life can be. I just think you have to be paying attention.
If you read the things I write about life with Schuyler and you feel pity for us, then I'm just a shitty writer. If you read me and find yourself, against all logic and convention, feeling a little bit jealous, then I've gotten it right.
March 25, 2007
My Review of the Battlestar Galactica Season Finale
Huh?
Why did my favorite TV show just turn into Lost?
I also can't believe it's not going to return until my book comes out. They have some explaining to do when it does.
Why did my favorite TV show just turn into Lost?
I also can't believe it's not going to return until my book comes out. They have some explaining to do when it does.
March 18, 2007
Blogging about blogging about writing? Fascinating!
I wrote a long post over at Monster Notes, my bookety book crap blog, about my publisher's decision to assign a subtitle to SCHUYLER'S MONSTER and my thoughts on the direction I hope that goes. Go read it if you're interested in the process, especially if you think you might have some good suggestions. God knows, I've personally got the crappy ones covered all by myself.
It's been a quiet, quiet Sunday afternoon around here. Schuyler and I watched King Kong on HBO earlier, and as usual, she cheered for Kong when he delivered the smack to his dinosaur friends. Watching Kong together is one of Schuyler and my most sacred rituals.
Before you send me indignant hate mail, I realize that it's perhaps not the most appropriate movie for a seven year old. But one more minute of Noggin and I was going to end up with my picture on CNN, with helicopters circling the building.
Besides, I'm not convinced that those rules really apply to Schuyler. She's experienced uglier monsters than Kong.
It's been a quiet, quiet Sunday afternoon around here. Schuyler and I watched King Kong on HBO earlier, and as usual, she cheered for Kong when he delivered the smack to his dinosaur friends. Watching Kong together is one of Schuyler and my most sacred rituals.
Before you send me indignant hate mail, I realize that it's perhaps not the most appropriate movie for a seven year old. But one more minute of Noggin and I was going to end up with my picture on CNN, with helicopters circling the building.
Besides, I'm not convinced that those rules really apply to Schuyler. She's experienced uglier monsters than Kong.
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