I began the actual writing of my next book a few days ago. I'd like to say that it was only a coincidence that I began a book on fatherhood (tentatively titled Father Land; that may change, but for some reason, I sort of need a title before I start something, nut that I am) the week before Father's Day. I'd be willing to concede, however, that the numerous advertisements for Father's Day sales and products might have provided a mental kick in the ass. "Say there, smart guy. Aren't you supposed to be writing a book on this stuff?"
Father's Day is a strange day, for the same reason that while I am looking forward to writing this book, I'm also much less sure than I was for Schuyler's Monster as to what exactly I'll be writing. Fatherhood is a murky concept, grown more-so in the post-Reagan era, where all the old rules have supposedly been chucked out the window and replaced with, well, nothing. Nothing consistent, anyway. The very first thing I talk about in the new book is the dearth of fathers in children's picture books, the ones for the very youngest. As they grow older, kids get Laura Ingalls Wilder's Pa and Harper Lee's Atticus Finch and such, but for the youngest, dad is strangely absent. Even Dr. Seuss pretty much leaves Pop out of his stories, unless it is to hop on him, poor bastard. The best father figure that the picture book set gets, in my opinion, is the Man with the Yellow Hat, and even he lets Curious George smoke an occasional stogie.
Motherhood has always been pretty clearly defined, for better and for worse, by society, but even during the Ward Cleaver days, fathers were always more easily defined by their absence (whether as a breadwinner or a deatbeat) than their presence. That hasn't changed as much as we'd like to think; according to Time Magazine, the typical American father still spends less than an hour a day with his kids.
As a result of all the confusion and fuzzy expectations, Father's Day ends up being, I think, a holiday without a template. In that way, it's one of my favorite holidays, and not just because I might get some stuff, swell though stuff may be. I like Father's Day because it's one that everyone just sort of makes up their own rules for.
I wanted to post something to wish all my fellow dads a happy Father's Day, but I especially wanted to send positive F-Day thoughts to all the special needs fathers out there, my fellow Shepherds of the Broken. I saw a post on another site about this subject, and at first it annoyed me. The gist of it seemed to be that while special needs fathers were rarely making decisions about their kid's care and were sort of standing in the background trying not to fuck up most of the time, we were nevertheless important components to the whole affair. It felt like a left-handed compliment.
But sometimes it feels like it might also be true. I know that the majority of parents I talk to about Shepherd topics tend to be women, for example, and when I attend meetings and functions for Schuyler's Box Class, I am usually the only father there. In fairness, one parent usually stays home to watch the kids, and I suspect at least some of the parents present would prefer we did that, too, rather than bringing Schuyler to all the meetings like we do. Still, it's almost always the mothers who end up at the meeting. I don't know, I can't speak for anyone out there but myself, but I think a lot of fathers have a naturally difficult time being taken seriously as parents under the best of circumstances. When the stakes go up with a broken child, we're not all suddenly transformed into Homer Simpson, but we might still find that societal barrier even harder to overcome.
I bulldoze right over it, and I do it with volume and scorched earth because I'm probably sort of an asshole. But I know how difficult it is to be a father of a child who is different, and I sympathize with every father out there who feels like they are in over their head, like a flight attendant trying to land a 747 without even Charleton Heston to help out.
To those dads, I want to say that the world needs you, more than ever, even if it treats you like morons by default. I hope that on Father's Day, at least, that world treats you like the heroes that you are.
June 17, 2007
June 14, 2007
June 13, 2007
Future Girl
For the past few days, I've been listening to the audiobook of Anne Lamott's Plan B: Further Thoughts on Faith. (I have a 45 minute commute to work three days a week, and my apartment complex's housepainters broke off my car's antenna while removing a cover a few weeks ago, so I've been listening to audiobooks lately. Judge me if you must, book snobs.) I'm a big fan of Anne Lamott, even if we've arrived at different places spiritually, and I was even before we had Schuyler or met the monster.
A passage from the chapter called "Diamondheart" jumped out at me, in which Lamott writes about her son, Sam:
When I heard that, I realized that the same is true of Schuyler, and no doubt of every other kid as well. When I look at her, I can see the baby she was, back when she was fat as a slug and covered with strange black hair, like a baby Wookiee. I can see her as a stumbling toddler, her body already beginning to lengthen, her transition from baby to girl beginning, and yet with those fat cheeks remaining. When I look at Schuyler, who has become a rambunctious, leggy tornado of a girl, I can see the baby whom I wore against my chest shortly after moving to Connecticut, shielding her impossibly tiny body from the bitter cold blowing in from Long Island Sound. She remains all those Schuylers to me. She is still the Chubbin.
Some days, some moments even, I can also see into the future. I can see, like the ghost images in a photograph in which the subject is moving too fast for the shutter speed, the shadow of a pretty teenager who speaks like a robot but still makes that face at boys and causes them, and me, heartbreak and despair. When we're out these days, I sometimes see teenaged girls who are embarrassed by their fathers, and others who still cling to them unashamedly, and I suspect that Schuyler will be a little of both. I can see her a decade from now, still dressing against the norms of the North Dallas elite girls and yet maintaining her alien cred, the oddball stunner who carries her robotic voice in a stylish bag and doesn't wait to be told how to be cool.
Sometimes I can even see Schuyler the young woman, the one who'll have a chance to go to college or go out into the world and make a place for herself on her own terms. In my most selfish dreams, Schuyler the young woman will be a writer, and she'll pick up the thread of chronicling her amazing and unpredictable life after I am no longer around to contribute.
I can't predict what Schuyler's life will be like. I can't even begin. But sometimes she'll look into me with those eyes, the eyes of a child and the eyes of a being not entirely of this world, forever a child and yet wise beyond her years already. When she does, I can see the person she'll grow up to be, the wild and broken and astonishing and perfect woman she was born to become. Schuyler looks more and more like her mother as she grows older, but I see so much of myself in those eyes, and in that crooked smile she flashes right before she does something that causes everyone in the room to hurriedly say, "No! Nonononononononono! Give me that! Holy crap..."
When people ask what I do, I tell them I'm a writer because I can truthfully say it without air quotes now, and I like that. But the truth is, I am Schuyler's father, her launchpad, and when I reach the end of my days, I hope she'll be standing there beside me to send me on my way.
She won't have words, but then, she and I so rarely need them.
A passage from the chapter called "Diamondheart" jumped out at me, in which Lamott writes about her son, Sam:
"I can see myself so clearly in him, many of my worst traits, some of my goodness. I can also still see many of Sam's ages in him: New parents always grieve as their babies get bigger, because they cannot imagine the child will ever be so heartbreakingly cute and needy again. But Sam is a swirl of every age he's ever been, and all the new ones, like cotton candy, like the Milky Way."
When I heard that, I realized that the same is true of Schuyler, and no doubt of every other kid as well. When I look at her, I can see the baby she was, back when she was fat as a slug and covered with strange black hair, like a baby Wookiee. I can see her as a stumbling toddler, her body already beginning to lengthen, her transition from baby to girl beginning, and yet with those fat cheeks remaining. When I look at Schuyler, who has become a rambunctious, leggy tornado of a girl, I can see the baby whom I wore against my chest shortly after moving to Connecticut, shielding her impossibly tiny body from the bitter cold blowing in from Long Island Sound. She remains all those Schuylers to me. She is still the Chubbin.
Some days, some moments even, I can also see into the future. I can see, like the ghost images in a photograph in which the subject is moving too fast for the shutter speed, the shadow of a pretty teenager who speaks like a robot but still makes that face at boys and causes them, and me, heartbreak and despair. When we're out these days, I sometimes see teenaged girls who are embarrassed by their fathers, and others who still cling to them unashamedly, and I suspect that Schuyler will be a little of both. I can see her a decade from now, still dressing against the norms of the North Dallas elite girls and yet maintaining her alien cred, the oddball stunner who carries her robotic voice in a stylish bag and doesn't wait to be told how to be cool.
Sometimes I can even see Schuyler the young woman, the one who'll have a chance to go to college or go out into the world and make a place for herself on her own terms. In my most selfish dreams, Schuyler the young woman will be a writer, and she'll pick up the thread of chronicling her amazing and unpredictable life after I am no longer around to contribute.
I can't predict what Schuyler's life will be like. I can't even begin. But sometimes she'll look into me with those eyes, the eyes of a child and the eyes of a being not entirely of this world, forever a child and yet wise beyond her years already. When she does, I can see the person she'll grow up to be, the wild and broken and astonishing and perfect woman she was born to become. Schuyler looks more and more like her mother as she grows older, but I see so much of myself in those eyes, and in that crooked smile she flashes right before she does something that causes everyone in the room to hurriedly say, "No! Nonononononononono! Give me that! Holy crap..."
When people ask what I do, I tell them I'm a writer because I can truthfully say it without air quotes now, and I like that. But the truth is, I am Schuyler's father, her launchpad, and when I reach the end of my days, I hope she'll be standing there beside me to send me on my way.
She won't have words, but then, she and I so rarely need them.
June 8, 2007
A Good Day
Late last night, we emailed two of Schuyler's teachers, the one who teaches her Box Class and the one who is the Assistive Technology Team Leader in Plano. We told them what happened.
They made calls.
Today when Julie picked up Schuyler, the site manager found her as she walked in the door and told how Schuyler had a very good day, how they had reintroduced her to the rest of the kids and had her demonstrate her device. Schuyler had shown them how the Big Box of Words worked, and used it to ask them questions. They were apparently very impressed. It sounded a little like the coffee cup all over again. I have no idea how things will be tomorrow, and I remain skeptical. But today, things were much, much different.
You'll read all about them in the book; they are all a part of its unexpected happy ending. But until such time as you can go throw a fistful of dollars at your local bookseller and walk out with my monstery tome in hand, just know that Schuyler's teachers are brilliant educators, but that's not why they are superheroes.
They are superheroes because they love Schuyler and never, ever, ever stop fighting for her. They are fiercely protective of her, like family.
It's not just her regular school year teachers, either. Her summer school teacher already knows Schuyler. In one of those fun coincidences that never feel like chance, her teacher for the summer was one of the assistants in the Box Class during Schuyler's first year in Plano. She called me a couple of weeks ago to tell me, and the absolute joy in her voice about seeing Schuyler again made me happy, and proud.
People dig my kid. I'm not always terribly concerned how they feel about me.
They made calls.
Today when Julie picked up Schuyler, the site manager found her as she walked in the door and told how Schuyler had a very good day, how they had reintroduced her to the rest of the kids and had her demonstrate her device. Schuyler had shown them how the Big Box of Words worked, and used it to ask them questions. They were apparently very impressed. It sounded a little like the coffee cup all over again. I have no idea how things will be tomorrow, and I remain skeptical. But today, things were much, much different.
You'll read all about them in the book; they are all a part of its unexpected happy ending. But until such time as you can go throw a fistful of dollars at your local bookseller and walk out with my monstery tome in hand, just know that Schuyler's teachers are brilliant educators, but that's not why they are superheroes.
They are superheroes because they love Schuyler and never, ever, ever stop fighting for her. They are fiercely protective of her, like family.
It's not just her regular school year teachers, either. Her summer school teacher already knows Schuyler. In one of those fun coincidences that never feel like chance, her teacher for the summer was one of the assistants in the Box Class during Schuyler's first year in Plano. She called me a couple of weeks ago to tell me, and the absolute joy in her voice about seeing Schuyler again made me happy, and proud.
People dig my kid. I'm not always terribly concerned how they feel about me.
June 6, 2007
Nostalgia, and not the good kind
I'm going to post this, and then I'm going to probably clam up about the situation until it resolves itself.
Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.
The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.
Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.
Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.
This gets fixed tomorrow, one way or another.
Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.
The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.
Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.
Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.
This gets fixed tomorrow, one way or another.
June 5, 2007
Rough transition
I wish I could report that Schuyler's making an awesome transition to her new summer program, but the truth is, she had a bad day.
Schuyler has an incident like this about once a year, which is probably not too bad for a seven year-old. Today she got frustrated and kicked a kid, and then one of the program workers as well. I'm still not sure we've gotten the whole story, but she admitted that she kicked them on her device. She said the boy hurt her first, but she didn't have an explanation for kicking the staffer. She shrugged miserably when we asked her why she did it, because I don't think she understands having a temper, or how to respond to frustration.
It's a particular difficulty with nonverbal kids, especially when they are interacting with new people who don't understand how to communicate with her. That doesn't excuse her behavior, but this sort of thing doesn't just occur in a vacuum. The Big Box of Words requires patience from everyone, since it takes her some time to respond to questions or express what she's feeling. It's only the second day, but I'm getting the feeling that her summer program staff just doesn't quite get it yet.
Her classes have gone great, she got a glowing report today from her teacher. I was a little surprised since she's in class for four straight hours in the morning, which is a lot for a seven year-old. It would be a lot for me, come to think of it. But her class is fine. It's the after school program that's giving her fits, and we don't yet understand why.
One clue may have been the fact that they said she wouldn't use her device. That sent up a red flag because in the past, she's only balked at using the device when she was made to feel weird about using it, or when it was made unavailable to her. That's when she gets frustrated, when she can't be understood. She's in a situation now with people who can't understand any of her moonman words or her signs and who might not be encouraging her to use her device. That doesn't leave her with much, and that's when she typically feels trapped and lashes out.
Well, it's only the second day. She promised to apologize on her device to the people she kicked and to be the very best little girl she can be tomorrow, and I believe that she'll do just that. My friend Tracy wrote once that Schuyler's sorrow at disappointing me was a powerful thing, and Julie said the same thing tonight. I don't know if it's a "Daddy's little girl" thing or what, but it's a little heartbreaking.
After our long talk and mutual agreement on her punishment this evening and what would happen tomorrow if things don't improve, she looked at me sadly and started punching buttons on her device.
"I love you," she said.
"I love you, too, Schuyler," I said. "I love you so, so much."
She smiled for the first time all evening and climbed out of her chair. She came over and put her arms around my neck and hugged me as hard as she's ever hugged me, and for a long time.
All the people out there who feel like we need to be disciplining her physically (and I'm sure I'll hear from them again like I did last summer; maybe they'll pronounce her name correctly this time when they call me on the phone), they have no idea.
I'll never raise a hand to her, ever. I don't think either of us would be able to bear it.
Schuyler has an incident like this about once a year, which is probably not too bad for a seven year-old. Today she got frustrated and kicked a kid, and then one of the program workers as well. I'm still not sure we've gotten the whole story, but she admitted that she kicked them on her device. She said the boy hurt her first, but she didn't have an explanation for kicking the staffer. She shrugged miserably when we asked her why she did it, because I don't think she understands having a temper, or how to respond to frustration.
It's a particular difficulty with nonverbal kids, especially when they are interacting with new people who don't understand how to communicate with her. That doesn't excuse her behavior, but this sort of thing doesn't just occur in a vacuum. The Big Box of Words requires patience from everyone, since it takes her some time to respond to questions or express what she's feeling. It's only the second day, but I'm getting the feeling that her summer program staff just doesn't quite get it yet.
Her classes have gone great, she got a glowing report today from her teacher. I was a little surprised since she's in class for four straight hours in the morning, which is a lot for a seven year-old. It would be a lot for me, come to think of it. But her class is fine. It's the after school program that's giving her fits, and we don't yet understand why.
One clue may have been the fact that they said she wouldn't use her device. That sent up a red flag because in the past, she's only balked at using the device when she was made to feel weird about using it, or when it was made unavailable to her. That's when she gets frustrated, when she can't be understood. She's in a situation now with people who can't understand any of her moonman words or her signs and who might not be encouraging her to use her device. That doesn't leave her with much, and that's when she typically feels trapped and lashes out.
Well, it's only the second day. She promised to apologize on her device to the people she kicked and to be the very best little girl she can be tomorrow, and I believe that she'll do just that. My friend Tracy wrote once that Schuyler's sorrow at disappointing me was a powerful thing, and Julie said the same thing tonight. I don't know if it's a "Daddy's little girl" thing or what, but it's a little heartbreaking.
After our long talk and mutual agreement on her punishment this evening and what would happen tomorrow if things don't improve, she looked at me sadly and started punching buttons on her device.
"I love you," she said.
"I love you, too, Schuyler," I said. "I love you so, so much."
She smiled for the first time all evening and climbed out of her chair. She came over and put her arms around my neck and hugged me as hard as she's ever hugged me, and for a long time.
All the people out there who feel like we need to be disciplining her physically (and I'm sure I'll hear from them again like I did last summer; maybe they'll pronounce her name correctly this time when they call me on the phone), they have no idea.
I'll never raise a hand to her, ever. I don't think either of us would be able to bear it.
June 4, 2007
RTFM
Well, as I write this, Schuyler has been at school and her after school program for most of the day, and so far, no panicky calls. I've been staring at my phone all day, daring it to ring, but so far, nothing. Which is good.
I have to say, however, that I don't have much faith that the current cease-fire in the Action Plan(!) skirmish is going to hold, particularly since I haven't heard back from Schuyler's doctor in Chicago. (Could it be that they are busy taking care of actual patients? How rude is that?) I predict a "So where's the Action Plan(!)? For the love of all that is holy, WHERE IS IT???" conversation when we go to pick her up.
I think I've decided on my next writing project, now that the book is off to St. Martin's. Every time Schuyler starts some new project, we go through some variation of this song and dance. The exception was her Box Class, but that was unique in that they had a lot of information on her prior to her arrival. Also, they are superheroes.
Anyway, I've decided that my next project should be a User's Manual for Schuyler, v1.0. Or perhaps a Guide to the Care and Feeding of Schuylers. (There's a joke that I'm showing some rare restraint by not making here. Email me if you can guess what it is.)
It'll have the necessary medical information, perhaps even a plan, you know? For action! It'll also have material about how she actually operates, what she likes, what she hates, what ASL signs she uses, what to do if internet weirdos (and perhaps book-reading weirdos) try to steal her and eat her, etc. All the things you need to know, with some jokes and fun photos, just as an incentive to actually read it.
The thing about Schuyler is yes, she's a mysterious little girl. But you know what? She's not THAT mysterious, not if you bother to get to know her.
I have to say, however, that I don't have much faith that the current cease-fire in the Action Plan(!) skirmish is going to hold, particularly since I haven't heard back from Schuyler's doctor in Chicago. (Could it be that they are busy taking care of actual patients? How rude is that?) I predict a "So where's the Action Plan(!)? For the love of all that is holy, WHERE IS IT???" conversation when we go to pick her up.
I think I've decided on my next writing project, now that the book is off to St. Martin's. Every time Schuyler starts some new project, we go through some variation of this song and dance. The exception was her Box Class, but that was unique in that they had a lot of information on her prior to her arrival. Also, they are superheroes.
Anyway, I've decided that my next project should be a User's Manual for Schuyler, v1.0. Or perhaps a Guide to the Care and Feeding of Schuylers. (There's a joke that I'm showing some rare restraint by not making here. Email me if you can guess what it is.)
It'll have the necessary medical information, perhaps even a plan, you know? For action! It'll also have material about how she actually operates, what she likes, what she hates, what ASL signs she uses, what to do if internet weirdos (and perhaps book-reading weirdos) try to steal her and eat her, etc. All the things you need to know, with some jokes and fun photos, just as an incentive to actually read it.
The thing about Schuyler is yes, she's a mysterious little girl. But you know what? She's not THAT mysterious, not if you bother to get to know her.
June 3, 2007
Thunderpug
We had a big storm move through early this morning, one that was all red and yellow blobs on the weather radar. It was loud enough to awaken Schuyler and me but not Julie, who will sleep through the Apocalypse, should all that Bible hooey turn out to be true. (Won't my face be red if it does.)
Schuyler and I sat in front of the window, watching the trees bending and the lightning flashing. I've always said that Schuyler is fearless, and that is mostly true, but the two exceptions are swimming in deep water, and thunder. She's not afraid of thunder, exactly. It just makes her nervous.
We sat and held onto each other and pretended to be scared and shivery every time a clap of thunder rolled by. I asked Schuyler what she thought caused thunder, and she had three theories, expressed through signs, mime and Martian since she didn't want to wake up Julie with her device.
Her first theory was that the thunder was pirates firing their cannons.
She then rejected that idea and decided that the thunder was the sound of a big fat man beating on his belly.
She finally discarded both of those theories and decided, without muchin the way of explanation, that the thunder was caused by our pug, Lulu.
Baaaaad dog.
Schuyler and I sat in front of the window, watching the trees bending and the lightning flashing. I've always said that Schuyler is fearless, and that is mostly true, but the two exceptions are swimming in deep water, and thunder. She's not afraid of thunder, exactly. It just makes her nervous.
We sat and held onto each other and pretended to be scared and shivery every time a clap of thunder rolled by. I asked Schuyler what she thought caused thunder, and she had three theories, expressed through signs, mime and Martian since she didn't want to wake up Julie with her device.
Her first theory was that the thunder was pirates firing their cannons.
She then rejected that idea and decided that the thunder was the sound of a big fat man beating on his belly.
She finally discarded both of those theories and decided, without muchin the way of explanation, that the thunder was caused by our pug, Lulu.
Baaaaad dog.
Newer, fancier, done-er
I sent off my manuscript with all its edits yesterday, along with new photos that may appear in the book. If this version passes muster, it's off to the legal department to see how many ways I might get sued, and then the real fun begins. Galleys, reviews, publication, remainders, obscurity and death.
Or something like that.
When the path of least resistance isn't
(Before I tell this story, I feel like I need to make something very clear, because it's sort of confusing. The program that I am discussing in this delightful rant is affiliated with Schuyler's school system, but they are not actually a part of the school itself. They operate on school grounds and work closely with the teachers, but their rules and administration are all their own. Schuyler's school district rocks the house and we are entirely pleased with the job they are doing. Scared yet?)
-----
You know how sometimes you feel like telling a long story, and then other times, when it's the same old crappy story on a brand new shiny day, you feel like just saying "Oh, fuck THAT" and never talking about it ever again?
We had a run-in with Schuyler's after school program, now her summer program, on Friday. On Friday at about 5pm, to be precise, when it was determined by the site director that Schuyler did not have the proper forms, in particular a "Medical Action Plan" (an animal whom we'd never heard of before), and would not be able to start the program on Monday, thankyouhaveaniceweekendbye.
Oh, fuck THAT.
I think I jumped right into Angry Dad mode, without much of the usual polite buildup. I don't feel apologetic or regretful, though. Julie spoke to the site director and called me to tell me the whole story, including how she felt like she had been shut down. These were the rules, it was our fault for not following them (even if we were never told about any of this, which apparently we should have been when we registered and, oh yeah, PAID for it), this is the way it was going to be, no exceptions, bye.
One thing that Shepherds of the Broken who have been in the fight for a while can tell you is this: the first answer you get from any program is almost never the final answer. The first answer is almost always the answer that provides the least effort for the program. That's not always a bad thing; most schools are overextended and need to streamline their workload as much as possible.
But in this case, it was at Schuyler's expense.
I called the program myself and was irritated to find that no one was answering the phone, because of course, it was after hours. This bomb had just been chucked at us on the way out the door. Fortunately for us, however, the site director also needed to fax the required form to Julie at work, and the fax hadn't gone through correctly. When she called to find out what was wrong, Julie asked her to call me because I was really pretty upset by this whole thing.
"Why, so he can yell at me?" the woman asked. "I don't need that."
I called her personal voicemail and mentioned that since she didn't want to talk to me on the phone, we could meet on Monday when we came to pick up Schuyler, who would in fact be attending that day. She called me back shortly thereafter.
So here's the short version. When a special needs child attends this particular program (which is connected with the school district but is apparently more autonomous than I'd thought), the program requires that a Medical Action Plan (in my head, it has an exclamation point at the end) must be in place with specific instructions on what to do in the case of an emergency. Let me say right now that I am in 100% agreement with this policy. Well, obviously.
The problem I had was that Schuyler has attended this program for the past year now. The only change is that she'll be at a different campus for the summer program. It's the same program, and the requirement for the Medical Action Plan(!) has applied all along.
I was slightly proud of myself for thinking of this particular argument early in the conversation, because it stopped her cold.
"So my problem isn't with the action plan," I said to her. "I think the bigger issue is why she was allowed to attend all year without one in place. If this plan is as important as you say it is, then it seems like your program has been operating in a pretty serious violation of the rules. Maybe the law, too."
In retrospect, I think I put her in a pretty difficult position. Either the Action Plan(!) is a very serious requirement and the program has been operating dangerously without one for almost a year, or it's one more piece of idiotic paperwork, and everyone can settle down and deal with Schuyler like a human child rather than a case number while we get the stupid Medical Action Plan(!!!) filled out for them. By the time we got off the phone (on polite terms, which was sort of a miracle considering what a dick I was at the beginning), we'd all agreed on the second option. Schuyler will attend the program, and we'll get the plan from her doctor in Chicago as soon as we can.
The thing that I think is important to note here is that the argument that Schuyler was somehow being neglected before is completely bogus. The program site director at her regular school is awesome and went to great lengths to meet with Schuyler's teachers and the school nurse. She became an expert in Schuyler's special needs, which at this point are not actually all that special.
Schuyler has some minor dietary restrictions for her swallowing disorder, meaning that things like crackers, chips, hard cookies and hard candy are out. It's also good to know the ASL sign for "potty", because if you make her stop what she's doing and spell it out on her device, things are probably going to end sadly. When the girl's got to go, she's got to go. And of course, there's always the (at this point theoretical) possibility of seizures, Schuyler's own personal Sword of Damocles.
So the site director at Schuyler's school knows all this, she's made sure that the whole team knows it, and it has been a very safe environment for Schuyler as a result. Did the site director fail to file an actual Medical Action Plan(!), or did the program fail to send that plan over to the new campus?
I have no idea, and really, it's not my problem. We made sure the team at her regular school knew what she needed, and Julie called the summer site director to personally make sure that her summer team knew what to do as well. They didn't, and they freaked out, and they decided that the easiest course of action was to simply refuse services to Schuyler until their bureaucratic requirements were satisfied.
Oh, fuck THAT.
-----
You know how sometimes you feel like telling a long story, and then other times, when it's the same old crappy story on a brand new shiny day, you feel like just saying "Oh, fuck THAT" and never talking about it ever again?
We had a run-in with Schuyler's after school program, now her summer program, on Friday. On Friday at about 5pm, to be precise, when it was determined by the site director that Schuyler did not have the proper forms, in particular a "Medical Action Plan" (an animal whom we'd never heard of before), and would not be able to start the program on Monday, thankyouhaveaniceweekendbye.
Oh, fuck THAT.
I think I jumped right into Angry Dad mode, without much of the usual polite buildup. I don't feel apologetic or regretful, though. Julie spoke to the site director and called me to tell me the whole story, including how she felt like she had been shut down. These were the rules, it was our fault for not following them (even if we were never told about any of this, which apparently we should have been when we registered and, oh yeah, PAID for it), this is the way it was going to be, no exceptions, bye.
One thing that Shepherds of the Broken who have been in the fight for a while can tell you is this: the first answer you get from any program is almost never the final answer. The first answer is almost always the answer that provides the least effort for the program. That's not always a bad thing; most schools are overextended and need to streamline their workload as much as possible.
But in this case, it was at Schuyler's expense.
I called the program myself and was irritated to find that no one was answering the phone, because of course, it was after hours. This bomb had just been chucked at us on the way out the door. Fortunately for us, however, the site director also needed to fax the required form to Julie at work, and the fax hadn't gone through correctly. When she called to find out what was wrong, Julie asked her to call me because I was really pretty upset by this whole thing.
"Why, so he can yell at me?" the woman asked. "I don't need that."
I called her personal voicemail and mentioned that since she didn't want to talk to me on the phone, we could meet on Monday when we came to pick up Schuyler, who would in fact be attending that day. She called me back shortly thereafter.
So here's the short version. When a special needs child attends this particular program (which is connected with the school district but is apparently more autonomous than I'd thought), the program requires that a Medical Action Plan (in my head, it has an exclamation point at the end) must be in place with specific instructions on what to do in the case of an emergency. Let me say right now that I am in 100% agreement with this policy. Well, obviously.
The problem I had was that Schuyler has attended this program for the past year now. The only change is that she'll be at a different campus for the summer program. It's the same program, and the requirement for the Medical Action Plan(!) has applied all along.
I was slightly proud of myself for thinking of this particular argument early in the conversation, because it stopped her cold.
"So my problem isn't with the action plan," I said to her. "I think the bigger issue is why she was allowed to attend all year without one in place. If this plan is as important as you say it is, then it seems like your program has been operating in a pretty serious violation of the rules. Maybe the law, too."
In retrospect, I think I put her in a pretty difficult position. Either the Action Plan(!) is a very serious requirement and the program has been operating dangerously without one for almost a year, or it's one more piece of idiotic paperwork, and everyone can settle down and deal with Schuyler like a human child rather than a case number while we get the stupid Medical Action Plan(!!!) filled out for them. By the time we got off the phone (on polite terms, which was sort of a miracle considering what a dick I was at the beginning), we'd all agreed on the second option. Schuyler will attend the program, and we'll get the plan from her doctor in Chicago as soon as we can.
The thing that I think is important to note here is that the argument that Schuyler was somehow being neglected before is completely bogus. The program site director at her regular school is awesome and went to great lengths to meet with Schuyler's teachers and the school nurse. She became an expert in Schuyler's special needs, which at this point are not actually all that special.
Schuyler has some minor dietary restrictions for her swallowing disorder, meaning that things like crackers, chips, hard cookies and hard candy are out. It's also good to know the ASL sign for "potty", because if you make her stop what she's doing and spell it out on her device, things are probably going to end sadly. When the girl's got to go, she's got to go. And of course, there's always the (at this point theoretical) possibility of seizures, Schuyler's own personal Sword of Damocles.
So the site director at Schuyler's school knows all this, she's made sure that the whole team knows it, and it has been a very safe environment for Schuyler as a result. Did the site director fail to file an actual Medical Action Plan(!), or did the program fail to send that plan over to the new campus?
I have no idea, and really, it's not my problem. We made sure the team at her regular school knew what she needed, and Julie called the summer site director to personally make sure that her summer team knew what to do as well. They didn't, and they freaked out, and they decided that the easiest course of action was to simply refuse services to Schuyler until their bureaucratic requirements were satisfied.
Oh, fuck THAT.
May 30, 2007
Monster slayer, redux
I'm finishing up final edits on SCHUYLER'S MONSTER and getting photo materials together, all during the week between Schuyler's last day of school and her first day of summer school. In other words, things are sort of crazy busy around here. Perhaps I'll keep posting the occasional photo, just to keep things semi-fresh.
I'll be back soon, though. That's a promise. Or a threat, I suppose.
May 28, 2007
Memorial Day, 2007
Futility
Move him into the sun--
Gently its touch awoke him once,
At home, whispering of fields unsown.
Always it awoke him, even in France,
Until this morning and this snow.
If anything might rouse him now
The kind old sun will know.
Think how it wakes the seeds--
Woke, once, the clays of a cold star.
Are limbs so dear-achieved, are sides
Full-nerved,--still warm,--too hard to stir?
Was it for this the clay grew tall?
--O what made fatuous sunbeams toil
To break earth's sleep at all?
Wilfred Owen (1893 - 1918)
May 27, 2007
May 25, 2007
Acronym Planet
Schuyler had her last IEP meeting this week, which was also her final week of school. (We're celebrating later today with some Father/Daughter Age Inappropriate Pirates & Monsters Movie Time. Don't judge me, jealous haters.)
The IEP, or Individualized Education Program, is part of the implementation of the Individuals with Disabilities Education Act (IDEA), which we Shepherds of the Broken use, along with the Americans with Disabilities Act (ADA), to bully the rest of the world into helping our kids get an appropriate education and generally not get swept under the rug. The IEP is the plan by which parents, teachers and therapists decide on the course of a student's school studies.
Here's what the government says about the IEP:
What that little block of government-issue cheese doesn't tell you is that for many parents of a broken kid, or perhaps even most parents, the IEP meeting itself is usually a gigantic, frustrating pain in the ass.
We've been lucky since coming to Plano. Our IEP meetings are generally a breeze now, although we certainly paid our dues back in Manor (the district near Austin where she attended school before) and in New Haven. I still remember the meeting where Schuyler's speech therapist in Manor finally admitted that the reason she wasn't recommending sign language was that she didn't know it herself and didn't think she had time to take a class. That was swell.
The Plano public schools' special education programs are among the best in the country, and so for the first time we've been able to relax a little and allow her teachers to take the lead. You have no idea what a relief that is, unless you have a broken child yourself, in which case you know EXACTLY what I'm talking about. IDEA provides for something known in special needs circles as "FAPE", or Free Appropriate Public Education. It's the part of the law that sets the minimum standard for special education in public schools. In some cases it's a life saver; in others, a mockery.
(If you want to put your broken kid in a neurotypical private school, you're on your own. Private schools do not have to accept students with special needs, and many choose not to. The ones that do typically make the parents of the child responsible for the cost of additional resources. On the other hand, your broken child is free to talk about Jesus, so there you go.)
What FAPE doesn't guarantee is the best possible special education. It provides for an "appropriate education", which many courts have defined as "access to an education" or a "basic floor of educational opportunity". Parents who go to court seeking additional services for their kid are told never to use the terms "best" or "maximizing potential" during legal proceedings. Parents have to educate themselves on what their kids need, and they need to find the programs that serve their kids the best. The idea of moving to a whole new city in order to put Schuyler in a particular school district struck some parents as an extreme move on our part, but to other parents of a broken child, it made perfect sense.
Plano was worth it, and continues to be worth it, but the thing is, it's not just because the teachers and specialists are good. Schuyler's team is exactly right for her for one simple reason. With a very few exceptions, they almost never tell us what she CAN'T do. They assume we already know that, and they're right. They set goals for Schuyler, they let us know when she's succeeding and when she's falling short, but they never set boundaries and they never accept limitations for her.
They get her. I suspect they get them all.
At her last meeting, her team pushed hard for a cognitive evaluation, a school-mandated three-year assessment of her abilities that we originally resisted when she was in Manor. I didn't trust her old school team in Manor, not with a test like that. Such a test is very difficult to administer to a non-verbal subject, and very subjective, so it requires an expert test administrator who can make appropriate accommodations for a nonverbal subject. This is the first time we've trusted the school to administer such a test correctly. Even so, I had and continue to have my reservations.
At the end, there's a number, and our fear was that it would be a number that would follow her along forever. Schuyler didn't do poorly on the test, but she had problems. I was happy to see that her team did recognize (in the actual written report itself) that her score probably represented the low end of her actual capabilities. It was nice to have confirmation that I'm not just being Defensive Denial Dad when I mention her aversion to evaluations. They see it, too. Schuyler can be defiant in evaluations, perhaps partly in sport but mostly because she becomes extremely impatient. She likes to give the answer after merely glancing at the possibilities, and the problem only gets worse as the test drags on. It's a problem that they identified at this last meeting, and one that we're going to have to work on.
The possibility was brought up that she might be ADD. Attention Deficit Disorder often accompanies cerebral palsy, which is related in many ways to Schuyler's polymicrogyria. Because of her malformed brain and the fact that no one knows exactly how it functions at the high level that it does, medications that affect brain chemistry are probably out of the question. But ADD was mentioned only as a possibility, and not one that they even feel compelled to test her for yet, so it's probably a little early to freak out. Even so, Julie and I were both surprisingly unmoved when they mentioned it.
With everything that our daughter has been through (and will likely go through in the future) with polymicrogyria, Attention Deficit Disorder isn't very scary. Compared to Schuyler's monster, it's a hamster.
The IEP, or Individualized Education Program, is part of the implementation of the Individuals with Disabilities Education Act (IDEA), which we Shepherds of the Broken use, along with the Americans with Disabilities Act (ADA), to bully the rest of the world into helping our kids get an appropriate education and generally not get swept under the rug. The IEP is the plan by which parents, teachers and therapists decide on the course of a student's school studies.
Here's what the government says about the IEP:
Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.
To create an effective IEP, parents, teachers, other school staff -- and often the student -- must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing -- and implementing -- an effective IEP requires teamwork.
What that little block of government-issue cheese doesn't tell you is that for many parents of a broken kid, or perhaps even most parents, the IEP meeting itself is usually a gigantic, frustrating pain in the ass.
We've been lucky since coming to Plano. Our IEP meetings are generally a breeze now, although we certainly paid our dues back in Manor (the district near Austin where she attended school before) and in New Haven. I still remember the meeting where Schuyler's speech therapist in Manor finally admitted that the reason she wasn't recommending sign language was that she didn't know it herself and didn't think she had time to take a class. That was swell.
The Plano public schools' special education programs are among the best in the country, and so for the first time we've been able to relax a little and allow her teachers to take the lead. You have no idea what a relief that is, unless you have a broken child yourself, in which case you know EXACTLY what I'm talking about. IDEA provides for something known in special needs circles as "FAPE", or Free Appropriate Public Education. It's the part of the law that sets the minimum standard for special education in public schools. In some cases it's a life saver; in others, a mockery.
(If you want to put your broken kid in a neurotypical private school, you're on your own. Private schools do not have to accept students with special needs, and many choose not to. The ones that do typically make the parents of the child responsible for the cost of additional resources. On the other hand, your broken child is free to talk about Jesus, so there you go.)
What FAPE doesn't guarantee is the best possible special education. It provides for an "appropriate education", which many courts have defined as "access to an education" or a "basic floor of educational opportunity". Parents who go to court seeking additional services for their kid are told never to use the terms "best" or "maximizing potential" during legal proceedings. Parents have to educate themselves on what their kids need, and they need to find the programs that serve their kids the best. The idea of moving to a whole new city in order to put Schuyler in a particular school district struck some parents as an extreme move on our part, but to other parents of a broken child, it made perfect sense.
Plano was worth it, and continues to be worth it, but the thing is, it's not just because the teachers and specialists are good. Schuyler's team is exactly right for her for one simple reason. With a very few exceptions, they almost never tell us what she CAN'T do. They assume we already know that, and they're right. They set goals for Schuyler, they let us know when she's succeeding and when she's falling short, but they never set boundaries and they never accept limitations for her.
They get her. I suspect they get them all.
At her last meeting, her team pushed hard for a cognitive evaluation, a school-mandated three-year assessment of her abilities that we originally resisted when she was in Manor. I didn't trust her old school team in Manor, not with a test like that. Such a test is very difficult to administer to a non-verbal subject, and very subjective, so it requires an expert test administrator who can make appropriate accommodations for a nonverbal subject. This is the first time we've trusted the school to administer such a test correctly. Even so, I had and continue to have my reservations.
At the end, there's a number, and our fear was that it would be a number that would follow her along forever. Schuyler didn't do poorly on the test, but she had problems. I was happy to see that her team did recognize (in the actual written report itself) that her score probably represented the low end of her actual capabilities. It was nice to have confirmation that I'm not just being Defensive Denial Dad when I mention her aversion to evaluations. They see it, too. Schuyler can be defiant in evaluations, perhaps partly in sport but mostly because she becomes extremely impatient. She likes to give the answer after merely glancing at the possibilities, and the problem only gets worse as the test drags on. It's a problem that they identified at this last meeting, and one that we're going to have to work on.
The possibility was brought up that she might be ADD. Attention Deficit Disorder often accompanies cerebral palsy, which is related in many ways to Schuyler's polymicrogyria. Because of her malformed brain and the fact that no one knows exactly how it functions at the high level that it does, medications that affect brain chemistry are probably out of the question. But ADD was mentioned only as a possibility, and not one that they even feel compelled to test her for yet, so it's probably a little early to freak out. Even so, Julie and I were both surprisingly unmoved when they mentioned it.
With everything that our daughter has been through (and will likely go through in the future) with polymicrogyria, Attention Deficit Disorder isn't very scary. Compared to Schuyler's monster, it's a hamster.
May 19, 2007
Om?
A few months ago, we saw a bunch of llamas hanging around in a huge pasture, right in the middle of boring old Plano. We got out and took a few photos and generally looked at them like the llama gawkers we are. Important to note here is that these llamas were not particularly close to us, and they didn't make a sound.
A few weeks later, we drove past the llamas again.
"Hey Schuyler," I said. "What do llamas say?"
She looked at me and answered with confidence.
"Om? Om? Om?"
It was pretty funny, and no matter how many times we ask her or question the validity of her llamaspeak, she's never swayed from her answer, in all these months. We thought it was random and cute, so we have her do her llama impersonation a lot.
This morning, as we watched our Saturday morning kiddie shows, and there was a segment on llamas. And guess what they say?
Turns out, Schuyler knows EXACTLY what llamas say.
I have no idea how she knows this. Is my kid hanging with strange llamas at school? I always knew she'd end up running with a weird crowd, but I didn't see this coming.
A few weeks later, we drove past the llamas again.
"Hey Schuyler," I said. "What do llamas say?"
She looked at me and answered with confidence.
"Om? Om? Om?"
It was pretty funny, and no matter how many times we ask her or question the validity of her llamaspeak, she's never swayed from her answer, in all these months. We thought it was random and cute, so we have her do her llama impersonation a lot.
This morning, as we watched our Saturday morning kiddie shows, and there was a segment on llamas. And guess what they say?
Turns out, Schuyler knows EXACTLY what llamas say.
I have no idea how she knows this. Is my kid hanging with strange llamas at school? I always knew she'd end up running with a weird crowd, but I didn't see this coming.
May 15, 2007
Just a little FYI
An entry I wrote recently about Schuyler and her device is being featured in this month's Parents' Corner column over the AAC Institute site. The AAC Institute is a not-for-profit advocacy group for augmentative and alternative communication (AAC) users. AAC includes a wide range of technologies, including the Big Box of Words.
I'm really happy that Robin Hurd at the AAC Institute asked me to contribute. She's a well-known advocate for those with developmental disabilities and a parent of twins a little older than Schuyler who both use communication devices. She knows her stuff.
(Edited to add: There's a good interview with Robin Hurd at The Autism Life where she explains some of the concepts behind AAC.)
This kind of advocacy for a cause that is responsible for Schuyler's second chance at a full life is exactly the sort of thing I hope to accomplish more of when the book comes out. All the fame and wealth and hot young English major groupies are just the icing on the cake.
I'm really happy that Robin Hurd at the AAC Institute asked me to contribute. She's a well-known advocate for those with developmental disabilities and a parent of twins a little older than Schuyler who both use communication devices. She knows her stuff.
(Edited to add: There's a good interview with Robin Hurd at The Autism Life where she explains some of the concepts behind AAC.)
This kind of advocacy for a cause that is responsible for Schuyler's second chance at a full life is exactly the sort of thing I hope to accomplish more of when the book comes out. All the fame and wealth and hot young English major groupies are just the icing on the cake.
May 14, 2007
Secrets
A few friends of mine have recently discovered or announced that they are having babies soon. Well, soon in the usual gestational sense.
Sometimes I get a sense that people are hesitant to tell us that they're having a baby. (Not these friends, I just mean in general.) I can understand why. Our friends know that we wanted a second child that we were never comfortable in risking. We've made peace with that, I think, and yet there is a tiny little bittersweet tug when talk turns to babies. We always thought that Schuyler would have made an incredible big sister.
We've also read too many sad stories of kids with polymicrogyria manifest much worse than with Schuyler. Gambling with that possibility was more than we were willing to do. And of course there's the ever-present likelihood (85-90%) that Schuyler's current success and sweet happy life will be rudely interrupted by seizures, maybe bad enough to hurt her. Maybe worse than that, even.
So we set ourselves to life with an only child, and that life is rewarding in ways that offset the monster. Schuyler doesn't know how spooky the future is, but even if she did, I can't imagine she'd give a damn. She cheerfully defies expectations, she takes up the fight and she's not complacent, either in school or in her ever-present quest for perfect play. She's living her life turned up to eleven, regardless of my own shortcomings.
I guess that's the other thing that makes people hesitant to talk of babies with us. I know that when I was an expectant father, seeing children with disabilities bothered me, although I would have been ashamed to admit it. I wouldn't have wanted to face that future, and I especially wouldn't have wanted to give much thought to whether or not I was up to the job as a father.
Special needs parenting is a daunting prospect, a sneaking monster that almost no one thinks they'll have to face until it lands on them with both clawed feet. Seeing how things could go down is hard. Wondering how they're going to be even without that possibility is hard enough.
In a world where such conversations would be polite, I would tell future parents the truth as I know it about parenting, even though my life as a father has been so different from most, even from other "shepherds of the broken". My truth is my own, but here it is.
No, I wasn't ready for this, but then, I wasn't ready for any of it. I wasn't ready for Schuyler to turn yellow a few days after she was born, requiring the funky Jedi light blanket on Christmas day to lower her bilirubin levels from their frighteningly high levels. I wasn't ready for her to run headfirst into a shelf at Borders one day and give herself a mild concussion when she was just learning to walk (in that "walk means lurch at high speeds" phase). I certainly wasn't ready to sit up with her in the hospital after her emergency surgery to relieve a painful abscess brought on by a nasty staph infection. It hasn't just been the monster that has snuck up on me.
But here's the thing. I also wasn't ready for her to burst out in loud, wheezing laughter for the first time, in the shadow of the World Trade Center almost a year before it became the saddest place on earth. I wasn't prepared for the first time she noticed my sadness at something and took my hand, kissing the back of it and patting it gently. I wasn't ready to hear "My name is Schuyler" come out of that first primitive box of words two years ago. Nor was I prepared to learn that she knew how to spell her own name (at a time when her teachers believed her to be unreachable) simply because she just started spelling it one day while we were sitting at Barnes & Noble, eating a cookie. And I don't believe Julie was ready to hear Schuyler say "mama" successfully for the first time a few weeks ago. (If she's not thinking about it, it comes out "mama". If she's trying, she trips herself up a little, coming up with "mwa-mwa". And "daddy" is just out of reach for now.)
I wasn't ready for any of this, and new parents just have to accept that they're not ready for any of whatever comes their way, either. Some parents find out the hard way that they shouldn't be parents, and some never realize it at all, living in a little fog of denial. But I think those parents are the exception.
For most new parents, every day is about learning, and while sometimes you'll learn the hard way, those lessons almost never leave a mark. Be prepared to learn from your kid. Be ready to encounter a lot of poo. Accept that while everyone else's saliva is gross, your child's is pure liquid delight. Deal with the concept that a half-chewed McNugget offered to you in the spirit of generosity is a gift that shouldn't be refused. Be ready for lots of scrapes and bruises and mysterious injuries, and have lots of Sesame Street Band-Aids on hand.
And most of all, know that even if you get a child who talks and who does everything in the world exactly right and meets your every expectation (selfish and otherwise), that kid is going to have unfathomable secrets.
Schuyler carries more secrets than most, but every now and then she will share one, and those moments, more than anything else, make my life worth living.
Sometimes I get a sense that people are hesitant to tell us that they're having a baby. (Not these friends, I just mean in general.) I can understand why. Our friends know that we wanted a second child that we were never comfortable in risking. We've made peace with that, I think, and yet there is a tiny little bittersweet tug when talk turns to babies. We always thought that Schuyler would have made an incredible big sister.
We've also read too many sad stories of kids with polymicrogyria manifest much worse than with Schuyler. Gambling with that possibility was more than we were willing to do. And of course there's the ever-present likelihood (85-90%) that Schuyler's current success and sweet happy life will be rudely interrupted by seizures, maybe bad enough to hurt her. Maybe worse than that, even.
So we set ourselves to life with an only child, and that life is rewarding in ways that offset the monster. Schuyler doesn't know how spooky the future is, but even if she did, I can't imagine she'd give a damn. She cheerfully defies expectations, she takes up the fight and she's not complacent, either in school or in her ever-present quest for perfect play. She's living her life turned up to eleven, regardless of my own shortcomings.
I guess that's the other thing that makes people hesitant to talk of babies with us. I know that when I was an expectant father, seeing children with disabilities bothered me, although I would have been ashamed to admit it. I wouldn't have wanted to face that future, and I especially wouldn't have wanted to give much thought to whether or not I was up to the job as a father.
Special needs parenting is a daunting prospect, a sneaking monster that almost no one thinks they'll have to face until it lands on them with both clawed feet. Seeing how things could go down is hard. Wondering how they're going to be even without that possibility is hard enough.
In a world where such conversations would be polite, I would tell future parents the truth as I know it about parenting, even though my life as a father has been so different from most, even from other "shepherds of the broken". My truth is my own, but here it is.
No, I wasn't ready for this, but then, I wasn't ready for any of it. I wasn't ready for Schuyler to turn yellow a few days after she was born, requiring the funky Jedi light blanket on Christmas day to lower her bilirubin levels from their frighteningly high levels. I wasn't ready for her to run headfirst into a shelf at Borders one day and give herself a mild concussion when she was just learning to walk (in that "walk means lurch at high speeds" phase). I certainly wasn't ready to sit up with her in the hospital after her emergency surgery to relieve a painful abscess brought on by a nasty staph infection. It hasn't just been the monster that has snuck up on me.
But here's the thing. I also wasn't ready for her to burst out in loud, wheezing laughter for the first time, in the shadow of the World Trade Center almost a year before it became the saddest place on earth. I wasn't prepared for the first time she noticed my sadness at something and took my hand, kissing the back of it and patting it gently. I wasn't ready to hear "My name is Schuyler" come out of that first primitive box of words two years ago. Nor was I prepared to learn that she knew how to spell her own name (at a time when her teachers believed her to be unreachable) simply because she just started spelling it one day while we were sitting at Barnes & Noble, eating a cookie. And I don't believe Julie was ready to hear Schuyler say "mama" successfully for the first time a few weeks ago. (If she's not thinking about it, it comes out "mama". If she's trying, she trips herself up a little, coming up with "mwa-mwa". And "daddy" is just out of reach for now.)
I wasn't ready for any of this, and new parents just have to accept that they're not ready for any of whatever comes their way, either. Some parents find out the hard way that they shouldn't be parents, and some never realize it at all, living in a little fog of denial. But I think those parents are the exception.
For most new parents, every day is about learning, and while sometimes you'll learn the hard way, those lessons almost never leave a mark. Be prepared to learn from your kid. Be ready to encounter a lot of poo. Accept that while everyone else's saliva is gross, your child's is pure liquid delight. Deal with the concept that a half-chewed McNugget offered to you in the spirit of generosity is a gift that shouldn't be refused. Be ready for lots of scrapes and bruises and mysterious injuries, and have lots of Sesame Street Band-Aids on hand.
And most of all, know that even if you get a child who talks and who does everything in the world exactly right and meets your every expectation (selfish and otherwise), that kid is going to have unfathomable secrets.
Schuyler carries more secrets than most, but every now and then she will share one, and those moments, more than anything else, make my life worth living.
May 10, 2007
Monster taking shape
There's a new post over at Monster Notes, and for a very good reason.
I got my edits back for my book.
I go on about it in jabbery detail over there, so I'll simply say that I am very pleased with them, and I'm getting excited about the finished product that is beginning to take shape. As comfortable as I usually am in being a walking cautionary tale, it looks like this time, things are working out pretty well.
Two other bits of interest to, well, me, anyway. First, the photo you see here is looking like the one that will most likely end up on the cover, which I think is a perfect choice. Secondly, the subtitle issue is shaping up nicely. The leading contender (which I can't share with you just yet, sorry) is both short ond NOT sweet, which is exactly what I hoped for.
I only have a few weeks to get my manuscript into its final fancy pants form, so don't be surprised if I'm a little less present around here for the month of May. (I always say that, but then I never quite go away, do I? You can decide for yourself if that's a good or bad thing...)
I got my edits back for my book.
I go on about it in jabbery detail over there, so I'll simply say that I am very pleased with them, and I'm getting excited about the finished product that is beginning to take shape. As comfortable as I usually am in being a walking cautionary tale, it looks like this time, things are working out pretty well.
Two other bits of interest to, well, me, anyway. First, the photo you see here is looking like the one that will most likely end up on the cover, which I think is a perfect choice. Secondly, the subtitle issue is shaping up nicely. The leading contender (which I can't share with you just yet, sorry) is both short ond NOT sweet, which is exactly what I hoped for.
I only have a few weeks to get my manuscript into its final fancy pants form, so don't be surprised if I'm a little less present around here for the month of May. (I always say that, but then I never quite go away, do I? You can decide for yourself if that's a good or bad thing...)
Back to work
(Originally posted at SCHUYLER'S MONSTER.)
I got my edits back.
Other writers keep telling me that this is the hardest time, waiting to see what your editor is going to do to your work. I've been nervous about it, I confess. Another writer friend of mine who was recently published has been telling tales of his editing process, in which massive swaths of text, sometimes whole chapters, had been removed. I was bracing myself for the scalpel, rehearsing my defense of chapters that I feared were not long for this world.
I got a note from the apartment complex office yesterday, saying that I had a package, and when I saw the return address, I knew Santa was here. Bonus: getting to open the package in front of the pretty young ladies working in the office and impress them with my fancy pants authorliness. My favorite among them (yeah, I have a favorite; leave me alone with my wicked old man ways) was actually talking about throwing a book release party for me. Thanks, Santa.
After returning to my apartment (hurriedly so I wouldn't pass out from sucking in my gut much longer), I started reading the letter and bracing myself for the cuts.
Except there weren't any, aside from a few sentences here and there. There were lots of tweaks, some questions and requests for clarifications, requests for more material in a few specific areas, and some legal questions. But no chapters with giant red X's. My original conception of this book is going to be very close to what comes out, almost frighteningly so.
As I dig into the manuscript page by page, making the small changes, I'm learning a lot about my writing. A few things I've realized just in the past 24 hours:
*I begin far too many sentences with the word "and". I'm not stupid; I know it creates incomplete sentences, and that's bad, by golly. But it's always been something I've done, a stylistic choice I made when blogging to give my work a conversational flow. That's fine for the immediacy of online writing, but in a memoir, it had to go. Just deleting them has improved the flow and tone dramatically.
*I am far too vulgar for my own good. Sheila didn't go through like a puritan missionary, striking out all my blue material and replacing it with family-friendly phrasing. What she did was recognize when I needed a strong word and when I was just being lazy. In every case so far that I've replaced an obscenity, it has strengthened the writing. She left the ones I felt I needed without flinching.
*Julie, on the other hand, is not quite as vulgar as I make her sound. Sorry, Julie. I think what happens is that when she gets upset, Julie achieves an eloquence that sticks in my mind, so I tend to quote her in those situations. Those are also the best opportunities for F-bombs, however. The final version of the book will present a much less sailorish version of my lovely bride. (Just so you know, however, the two edits I did to clean up her image a little? Total spin. She really did say the nasty things I originally reported. They just didn't seem so cute on the written page.)
I'm sure there must be some sort of cosmic plan involved in giving two foul-mouthed people like Julie and myself a child who is physically incapable of repeating the off-color words and phrases that occasionally slip out in front of her. (If by "occasionally", you mean "daily".) Lord help us when she starts spelling out words on her device by ear, or starts programming them into it by herself.
If you doubt for a moment that Schuyler's story landed on the desk of exactly the right editor, you should know that when I wrote about Schuyler's favorite movie (King Kong, of course), Sheila corrected my spelling of one character's name and fleshed out some other information as well. Is my editor a King Kong fan, too? THAT, my friends, is Fate at work.
So I'm back to work on the book, happily so, and feeling more confident than ever that hooking up with St. Martin's Press was the best thing that could have possibly happened to this book. I know there are people out there who doubt the value of a good agent or a good editor. For me, however, they've made all the difference.
The photo at the top of this post is looking like the odds-on favorite for the book cover, by the way, and I think that's great. Schuyler wasn't posing for some metaphoric conceptual shot, either. She was laughing at something, I snapped the shot while she giggled behind her hand, and a split second she had moved on. It was only later that I realized what I had captured. It was the luckiest of shots.
I got my edits back.
Other writers keep telling me that this is the hardest time, waiting to see what your editor is going to do to your work. I've been nervous about it, I confess. Another writer friend of mine who was recently published has been telling tales of his editing process, in which massive swaths of text, sometimes whole chapters, had been removed. I was bracing myself for the scalpel, rehearsing my defense of chapters that I feared were not long for this world.
I got a note from the apartment complex office yesterday, saying that I had a package, and when I saw the return address, I knew Santa was here. Bonus: getting to open the package in front of the pretty young ladies working in the office and impress them with my fancy pants authorliness. My favorite among them (yeah, I have a favorite; leave me alone with my wicked old man ways) was actually talking about throwing a book release party for me. Thanks, Santa.
After returning to my apartment (hurriedly so I wouldn't pass out from sucking in my gut much longer), I started reading the letter and bracing myself for the cuts.
Except there weren't any, aside from a few sentences here and there. There were lots of tweaks, some questions and requests for clarifications, requests for more material in a few specific areas, and some legal questions. But no chapters with giant red X's. My original conception of this book is going to be very close to what comes out, almost frighteningly so.
As I dig into the manuscript page by page, making the small changes, I'm learning a lot about my writing. A few things I've realized just in the past 24 hours:
*I begin far too many sentences with the word "and". I'm not stupid; I know it creates incomplete sentences, and that's bad, by golly. But it's always been something I've done, a stylistic choice I made when blogging to give my work a conversational flow. That's fine for the immediacy of online writing, but in a memoir, it had to go. Just deleting them has improved the flow and tone dramatically.
*I am far too vulgar for my own good. Sheila didn't go through like a puritan missionary, striking out all my blue material and replacing it with family-friendly phrasing. What she did was recognize when I needed a strong word and when I was just being lazy. In every case so far that I've replaced an obscenity, it has strengthened the writing. She left the ones I felt I needed without flinching.
*Julie, on the other hand, is not quite as vulgar as I make her sound. Sorry, Julie. I think what happens is that when she gets upset, Julie achieves an eloquence that sticks in my mind, so I tend to quote her in those situations. Those are also the best opportunities for F-bombs, however. The final version of the book will present a much less sailorish version of my lovely bride. (Just so you know, however, the two edits I did to clean up her image a little? Total spin. She really did say the nasty things I originally reported. They just didn't seem so cute on the written page.)
I'm sure there must be some sort of cosmic plan involved in giving two foul-mouthed people like Julie and myself a child who is physically incapable of repeating the off-color words and phrases that occasionally slip out in front of her. (If by "occasionally", you mean "daily".) Lord help us when she starts spelling out words on her device by ear, or starts programming them into it by herself.
If you doubt for a moment that Schuyler's story landed on the desk of exactly the right editor, you should know that when I wrote about Schuyler's favorite movie (King Kong, of course), Sheila corrected my spelling of one character's name and fleshed out some other information as well. Is my editor a King Kong fan, too? THAT, my friends, is Fate at work.
So I'm back to work on the book, happily so, and feeling more confident than ever that hooking up with St. Martin's Press was the best thing that could have possibly happened to this book. I know there are people out there who doubt the value of a good agent or a good editor. For me, however, they've made all the difference.
The photo at the top of this post is looking like the odds-on favorite for the book cover, by the way, and I think that's great. Schuyler wasn't posing for some metaphoric conceptual shot, either. She was laughing at something, I snapped the shot while she giggled behind her hand, and a split second she had moved on. It was only later that I realized what I had captured. It was the luckiest of shots.
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