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.
June 5, 2007
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.
May 8, 2007
Monster Gallery
Schuyler had a pretty good day.
She woke up in a good mood and insisted on taking photos of her bus when it pulled up. She took pictures of me, too, as I took pictures of her, and the ridiculousness of it made her laugh. When she climbed aboard the bus, she waved excitedly and blew her kisses to me, unaware of the tiny piece of me that died like it does every time her bus pulls away.
We met with two of her teachers today, the miracle worker who runs her box class and the mainstream first grade teacher who loves our daughter even though I think she's a little frightened by Schuyler's independent streak. She told us today, in the midst of reporting Schuyler's progress, that occasionally "she talks too much in class". Julie actually laughed out loud.
The general feeling of her teachers seemed to be that Schuyler is doing very well in some areas, lags behind in some others (she apparently has inherited a gene from me, the one that both hates and fears math), and can either reach for academic greatness or pull amusing but ultimately useless stunts, depending entirely on her mood.
(These include correctly writing, in her careful, jagged handwriting, the numbers up to 29 before getting off track for a few lines and then simply drawing little squiggles in every box, right up to the last one, where she wrote "100". Or the science question, in which she answered the question "What is the natural resource that covers over 70% of the earth's surface and is required by all living things?", not with the obvious junk science answer, "water", but rather that more controversial scientific theory, "ballet class".)
For the most part, however, she appears to balance that occasional lapse with genuine, true school-nerd enthusiasm. She raises her hand in class, whether or not she knows the answer or has even heard the question yet. Sure, I suppose she could simply be turning into a little kissass, but I think the truth is that she's happy to have a voice of sorts and is desperate to participate in the world around her. She's become excited about her Big Box of Words again, thanks to her ongoing transition to the higher level, and she's starting to show her classmates how to use it on the 84-key setting. Her teachers say she's doing well in school, despite her monster, and she'll be moving on to second grade next fall.
I worry about Schuyler, about the uphill struggle she faces in trying to keep up with the rest of the kids in spite of the huge disadvantage that she has with the BBoW. And let's be clear; it is a remarkable tool for her, it has given her a way to communicate that has changed her life and unlocked a lot of doors for her, but it is also a maddeningly slow way to speak, and that is going to make it very hard for her to function in class. There are time benchmarks that she is supposed to be able to meet according to state guidelines, and they don't lend themselves to augmentative communication. But there are adults who do it, and Schuyler will, too.
I also worry about her social development, particularly how she'll be accepted by her peers. But school seems to be a haven for her in that regard; the neurotypical kids love her and argue over who is going to help her in class. She may still be the equivalent to E.T. to most of them, but we'll take it for now. Perhaps my expectations about mean kids will be proven wrong; they have been so far, I must admit. Grown-ups are often another story, but she doesn't appear to care too much for adult acceptance. We're the dinosaurs. Mean, old and doomed to extinction.
We saw her briefly when we went to the classroom to get some paperwork taken care of, and she was neither embarrassed nor clingy. She said her loud hellos, gave her big, Sumo-style hugs and then went back to her social circle, bragging about how her dad (the Hero of Inappropriate Movie Choices) took her to see Spider-man over the weekend.
When she got out of school, we gave Schuyler a surprise, a hand-crafted little monster that was made for her by an artistic reader. She loved it, playing with it and talking to it all the way home. She kept asking us for its name, and Julie suggested "Paisley", for obvious reasons. Schuyler liked that name, so Monster Paisley was born.
When we got home, I wanted to take a photo of it to put on the book site, and Schuyler eagerly helped. I had her gather the monsters that she'd been given as gifts over the past year or two, and as I took their photo, she kept bringing in even more monsters (along with Jasper, who gets to do whatever he wants, thanks to his role as Unofficial Big Brother).
Schuyler wanted a monster family portrait.
I've taken a lot of portraits, but this one was my favorite so far.
So it goes.
May 3, 2007
Bookedy book book stuff
I've been posting so rarely on my book blog lately that it's probably worth mentioning when there's a new entry over there.
So yeah. There's a new entry over there.
This has been the slow time for book stuff, and really, I'm still nine months away from publication, so that's probably as it should be. I've been writing online for so long, since 1995 if you can believe it, and the worst delays I usually have to deal with involve not having internet access at the precise moment that I want to upload some pearls of wisdom.
(Tonight would be a good example. Massive, nasty Texas storms rolled through last night and knocked out our power for about eight hours. It was cool while the storms were actually moving through; we just sat on the bed and watched the show, waiting for cows and trailer homes to start flying by so we'd know when it was time to hide in the bathtub. Now, it's just boring. Also, it's uncool when the lights and television suddenly come back on at 3am. I think I peed myself.)
So I've been spoiled by the instant gratification of the internet. Adjusting to the glacial pace of the publishing world is probably good for my impatient soul. Having said that, I found out today that I'll be getting my first round of edits back soon, and that's when the real work begins. You know, aside from that whole "writing the book" part.
So yeah. There's a new entry over there.
This has been the slow time for book stuff, and really, I'm still nine months away from publication, so that's probably as it should be. I've been writing online for so long, since 1995 if you can believe it, and the worst delays I usually have to deal with involve not having internet access at the precise moment that I want to upload some pearls of wisdom.
(Tonight would be a good example. Massive, nasty Texas storms rolled through last night and knocked out our power for about eight hours. It was cool while the storms were actually moving through; we just sat on the bed and watched the show, waiting for cows and trailer homes to start flying by so we'd know when it was time to hide in the bathtub. Now, it's just boring. Also, it's uncool when the lights and television suddenly come back on at 3am. I think I peed myself.)
So I've been spoiled by the instant gratification of the internet. Adjusting to the glacial pace of the publishing world is probably good for my impatient soul. Having said that, I found out today that I'll be getting my first round of edits back soon, and that's when the real work begins. You know, aside from that whole "writing the book" part.
May 2, 2007
Don't quote me
(Originally posted at SCHUYLER'S MONSTER.)
Okay, so let's say you're working on your book, and there's a favorite song of yours, or a novel by your favorite writer, or some other bit of work that you find both inspirational and relevant in the context of what you're writing. You say to yourself, "Gosh, Self, I think that would make a swell addition to my book!"
I'd like to suggest that you resist the urge. Unless you find you really need those quotes, you might be opening yourself up to a world of frustration.
When I wrote SCHUYLER'S MONSTER, I included a number of quotes, mostly from songs that I liked and have sung to Schuyler over the years. In a few cases, the songs themselves played a part in the story. Including them made sense to me.
Move forward a few months, to about ten minutes ago. I just finished going over my manuscript and removing every single one of those quotes.
I did it for two reasons. The first, and most obvious, is that it is quite simply a gigantic pain in the ass to get permission to use quoted material. I sent out four permission requests (using a form written in Martian Legalese provided by St. Martin's Press), three in order to secure permission to use song lyrics and one for a line of poetry. Of the four, two were ignored outright, at least so far. One artist's manager corresponded with me via email and, after I made a change requested by her legal department AFTER bouncing it off of St. Martin's legal department, agreed to give me the permission but then never actually returned the form.
And then there was the poetry quote. Fifteen words, not even a complete sentence. I sent the form, along with a letter and a business card, to the person in charge of permissions at the big house that published the poet. (I won't say which publisher, except that every time I see their name, I think of The Office.) A few weeks later, he returned it all, even my business card. (In the words of one of my fictional idols, High Fidelity's Rob Gordon, "That is some cold shit.") The reason? He needed more information, things like the publication date, number of pages, territory, print run, and price. At the time, my book was ten months away from publication; I didn't have answers to most of those questions.
My editor was kind enough to provide the answers for me (which was actually pretty cool to find out; you'll laugh, you'll cry, you'll kiss $24.95 goodbye), so I resubmitted the form. (No business card this time, though. Get your own, buddy.) Today I finally got permission. Except of course, they listed my publisher as "Self-published", so I have no idea if it's even valid.
I give up. Keep your fifteen words. It's like trying to negotiate with the Gollum. "My precious!"
I said there were two reasons for losing the quotes. The general pain-in-the-assedness is a good one, to be sure, but perhaps a better one is simply this. If I have faith in my writing (and if a house like St. Martin's is willing to believe and invest in my work then I'd better believe in it, too), then I need to re-evaluate why exactly I feel it necessary to use other people's words to back up my own. I see the value of a quote for color, but when I really looked at the number of quotations I was using (one or two at the beginning, one for each of the three parts, and some material within the text as well), I realized that it was too much. At that point, I'm relying on someone else's words to express what I should be saying myself.
It feels like a rookie mistake, and I'm glad I got it out of my system this early in the process.
I should be getting my first edits back soon. I can't imagine I won't have something to say then. Things are about to start happening in a hurry. I look forward to it with enthusiasm and perhaps just a sprinkling of nausea. You know, the good kind of nausea.
Okay, so let's say you're working on your book, and there's a favorite song of yours, or a novel by your favorite writer, or some other bit of work that you find both inspirational and relevant in the context of what you're writing. You say to yourself, "Gosh, Self, I think that would make a swell addition to my book!"
I'd like to suggest that you resist the urge. Unless you find you really need those quotes, you might be opening yourself up to a world of frustration.
When I wrote SCHUYLER'S MONSTER, I included a number of quotes, mostly from songs that I liked and have sung to Schuyler over the years. In a few cases, the songs themselves played a part in the story. Including them made sense to me.
Move forward a few months, to about ten minutes ago. I just finished going over my manuscript and removing every single one of those quotes.
I did it for two reasons. The first, and most obvious, is that it is quite simply a gigantic pain in the ass to get permission to use quoted material. I sent out four permission requests (using a form written in Martian Legalese provided by St. Martin's Press), three in order to secure permission to use song lyrics and one for a line of poetry. Of the four, two were ignored outright, at least so far. One artist's manager corresponded with me via email and, after I made a change requested by her legal department AFTER bouncing it off of St. Martin's legal department, agreed to give me the permission but then never actually returned the form.
And then there was the poetry quote. Fifteen words, not even a complete sentence. I sent the form, along with a letter and a business card, to the person in charge of permissions at the big house that published the poet. (I won't say which publisher, except that every time I see their name, I think of The Office.) A few weeks later, he returned it all, even my business card. (In the words of one of my fictional idols, High Fidelity's Rob Gordon, "That is some cold shit.") The reason? He needed more information, things like the publication date, number of pages, territory, print run, and price. At the time, my book was ten months away from publication; I didn't have answers to most of those questions.
My editor was kind enough to provide the answers for me (which was actually pretty cool to find out; you'll laugh, you'll cry, you'll kiss $24.95 goodbye), so I resubmitted the form. (No business card this time, though. Get your own, buddy.) Today I finally got permission. Except of course, they listed my publisher as "Self-published", so I have no idea if it's even valid.
I give up. Keep your fifteen words. It's like trying to negotiate with the Gollum. "My precious!"
I said there were two reasons for losing the quotes. The general pain-in-the-assedness is a good one, to be sure, but perhaps a better one is simply this. If I have faith in my writing (and if a house like St. Martin's is willing to believe and invest in my work then I'd better believe in it, too), then I need to re-evaluate why exactly I feel it necessary to use other people's words to back up my own. I see the value of a quote for color, but when I really looked at the number of quotations I was using (one or two at the beginning, one for each of the three parts, and some material within the text as well), I realized that it was too much. At that point, I'm relying on someone else's words to express what I should be saying myself.
It feels like a rookie mistake, and I'm glad I got it out of my system this early in the process.
I should be getting my first edits back soon. I can't imagine I won't have something to say then. Things are about to start happening in a hurry. I look forward to it with enthusiasm and perhaps just a sprinkling of nausea. You know, the good kind of nausea.
April 28, 2007
Screw Holland, revisited
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.
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 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.
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