The monster was unusually present this weekend, albeit held at bay. Schuyler participated in a caroling party with other kids who use AAC technology, and while it was a fascinating and occasionally heartbreaking experience, it also involved a lot of other people whose stories aren't mine to tell. I'll simply say that it was yet another one of those experiences with other, more broken kids where I felt despair, while Schuyler just saw an opportunity for seasonally appropriate merriment. (At one point she decided to take over and conduct the performance.) One day, I'll learn to see this grand rough world like Schuyler does, rather than in my old sad bastard way.
I recently heard from a magazine editor who wanted to do something on Schuyler's Monster for the magazine's February issue. After he got a copy of the book, he suggested something different. Rather than a standard minireview of the book itself, he wanted to do a story about us and the book, but with a twist.
He wanted to interview Schuyler, on her device, via email or instant message.
I initially hesitated, although I'm not entirely sure why. I mean, I try to insulate Schuyler from all of the book spazzing and hype, but that's perhaps a little naive, considering that she is the title character of the book, her face splashed across the cover. For better or for worse (better, I feel pretty sure), Schuyler's along for the ride on this. Furthermore, I dig this magazine, which is both a little fancy and a little shit-disturbing at the same time, and I like the executive editor, whose writing I am familiar with from his days at a now-defunct Dallas weekly alternative paper. It was an interesting idea, one that simultaneously triggered my defensive dad reflex and my curiosity. After consulting Julie and Schuyler, curiosity won out.
In the end, we opted for an interview conducted over email, partly because I wanted to be able to take time with Schuyler to make sure she understood the questions, and partly because I wasn't entirely sure how to make the Big Box of Words work with an IM client. (Incidentally, it turns out that it is stupidly easy.) I won't go into the details of the interview itself, since that's obviously for someone else's publication, but I felt like it went pretty well. Schuyler was very careful and particular in her unusually long-winded responses, and the only help she needed from me was in spelling some words she couldn't find on her device.
There was a question about her dreams, and while I'm not 100% sure she entirely understood it, I was nevertheless interested to see what she'd have to say. Schuyler's dreams have always fascinated me, mostly because of all the parts of her life that we are occasionally privy to, her dreams remain the most unreachable. She has never shared them with us in any meaningful way; I can only think of one time before now, after she was troubled by a bad dream about monsters of some kind. But even then, she didn't seem frightened, only very sad, and she wouldn't share any details.
That's how it is with Schuyler. As she gets older, some doors open up to us, and we can see parts of her world that were closed off to us before. But she can slam them closed whenever she wants, and sometimes she makes that choice, particularly when she's pissed off. She stops using her device, throws her arms in frustration, and starts jabbering in a stream of Schuylerese that is two parts Martian and one part whine. Schuyler can be a pill when she chooses to be.
Even when she's happy, though, there are doors seemingly forever closed to us. Her dreams are her own, and so are her songs. She breaks into little melodies of her own creation, with lyrics that go forever untranslated. I'm learning not to ask her about her music, as that is the fastest way to make her stop singing. When Schuyler sings, you listen and you take the part that is meant for you, the sweet and untethered melodies that flit around like moths, never landing, always moving. The lyrics we just have to live without. They are hers alone.
December 17, 2007
December 16, 2007
December 10, 2007
She's here about the reaping.
Well, okay, enough of the PajamasMedia idiocy. I'll just have to be more discriminating when choosing what part of the Internet lawn to step in next time. I feel like I just ruined a good pair of shoes.
Besides, as someone pointed out to me, the opponents of inclusion lost their war. The Individuals with Disabilities Education Act is the law of the land and it protects the rights of about six and a half million kids from the assmonkeys who would ghettoize them. (Although I do not believe that assmonkeys are explicitly named in the legislation. So, you know, watch out for loopholes.)
So two little things tonight instead.
First of all, if you go to my book's Amazon page, you'll see that the cover is finally showing up. (While you're there, why not buy a few copies for all your friends? You'll laugh, you'll cry, you'll kiss fifteen dollars and sixty one cents goodbye... Okay, I'll stop.) One more step towards the big day, which is now only seventy days away. I have no idea why that little "tent" is still there, however.
The other small item tonight is sort of weird, but like most things that Schuyler conjures up out of the Martian atmosphere, I just ran with it. For the past few weeks, Schuyler has been asking about death. She originally brought it up in a question about my father (whom she now believes resides in every cemetery we drive past), but after I answered her questions honestly, she's become fascinated by the topic in general.
Tonight, while we were playing, she told me that I was dead. (She even made up a sign for it; her hand touches her forehead, similar to the ASL sign for sick, but then it flies off like, well, your soul, I guess.) She instructed me to lie motionless on my bed while she concocted a ceremony of her very own, singing a jaunty little tune to herself as she went back and forth from her room to fetch supplies and mourners.
If you should attend my funeral in the hopefully distant future, here's what you might expect from Schuyler. First, she ritualistically waved various pieces of plastic jewelry over my head. (The gesture seemed oddly Catholic to me, heathen that I am.) She then took a play fork and offered me invisible food. But if I tried to eat it, she gave me a stern "No!"
"Daddy, you're dead," she reminded me.
After I explained to her that at a funeral, someone gives a speech to say goodbye to the person and tell why they'll be missed, she wisely selected Jasper, the elder statesman of her toy animals, to put my life in perspective. He chose to deliver my eulogy in Martian, of course.
I know this all sounds wildly creepy, and I must admit, it wasn't my first choice of a game to play, especially not two weeks after my fortieth birthday. But I'm proud of her for asking about such a rough concept, and for continuing to turn it over in her head as she tries to make sense of it. Like so many other things in her life, she doesn't find it sad, only puzzling.
At the end of our game, Schuyler decided she wanted to be dead, too. I'm not sure real corpses giggle that much, though.
Besides, as someone pointed out to me, the opponents of inclusion lost their war. The Individuals with Disabilities Education Act is the law of the land and it protects the rights of about six and a half million kids from the assmonkeys who would ghettoize them. (Although I do not believe that assmonkeys are explicitly named in the legislation. So, you know, watch out for loopholes.)
So two little things tonight instead.
First of all, if you go to my book's Amazon page, you'll see that the cover is finally showing up. (While you're there, why not buy a few copies for all your friends? You'll laugh, you'll cry, you'll kiss fifteen dollars and sixty one cents goodbye... Okay, I'll stop.) One more step towards the big day, which is now only seventy days away. I have no idea why that little "tent" is still there, however.
The other small item tonight is sort of weird, but like most things that Schuyler conjures up out of the Martian atmosphere, I just ran with it. For the past few weeks, Schuyler has been asking about death. She originally brought it up in a question about my father (whom she now believes resides in every cemetery we drive past), but after I answered her questions honestly, she's become fascinated by the topic in general.
Tonight, while we were playing, she told me that I was dead. (She even made up a sign for it; her hand touches her forehead, similar to the ASL sign for sick, but then it flies off like, well, your soul, I guess.) She instructed me to lie motionless on my bed while she concocted a ceremony of her very own, singing a jaunty little tune to herself as she went back and forth from her room to fetch supplies and mourners.
If you should attend my funeral in the hopefully distant future, here's what you might expect from Schuyler. First, she ritualistically waved various pieces of plastic jewelry over my head. (The gesture seemed oddly Catholic to me, heathen that I am.) She then took a play fork and offered me invisible food. But if I tried to eat it, she gave me a stern "No!"
"Daddy, you're dead," she reminded me.
After I explained to her that at a funeral, someone gives a speech to say goodbye to the person and tell why they'll be missed, she wisely selected Jasper, the elder statesman of her toy animals, to put my life in perspective. He chose to deliver my eulogy in Martian, of course.
I know this all sounds wildly creepy, and I must admit, it wasn't my first choice of a game to play, especially not two weeks after my fortieth birthday. But I'm proud of her for asking about such a rough concept, and for continuing to turn it over in her head as she tries to make sense of it. Like so many other things in her life, she doesn't find it sad, only puzzling.
At the end of our game, Schuyler decided she wanted to be dead, too. I'm not sure real corpses giggle that much, though.
Apology
As you'll see when you finally get a chance to read SCHUYLER'S MONSTER, I don't shy away from talking about my own shortcomings as a father. No one's perfect, and sometimes I feel farther from from that perfection than most. And today, I need to address something.
I owe an apology. To Schuyler.
The first time I wrote an article for PajamasMedia.com, I wasn't completely aware of just how conservative their readership was, but if I had gotten a better feel for the site, I probably would have written for them anyway. My own liberal outlook doesn't mean I'm closed to conservatives and their beliefs. One of Schuyler's most adamant and consistent supporters, going back for years, is standing out on the very leading edge of the right wing, his toes dangling happily in the wind. Julie's parents are pretty conservative, and few people do more for Schuyler on a daily basis than they do. One of the themes of my first essay on PajamasMedia, and a big chunk of the book as well, addresses how wrong I was to prejudge the conservatives of Plano in the first place. I don't believe that the issues surrounding special needs parenting fall into partisan ideological areas, any more than the monsters that stalk these kids do so according to how their parents vote.
Nevertheless, after some of the personal comments left on that first essay, I wrote a second essay with some hesitation, and sure enough, the reactions were incrementally worse. I wasn't bothered by the personal attacks this time, either, although I did make an attempt to clarify a few things and also to defend myself against one particularly dishonest remark. (And a reminder to the kids: RESPONDING TO TROLLS IS ALWAYS ALWAYS ALWAYS A MISTAKE.) I was accused of being bitter and rude, as if the opponents of inclusion would happily invite our broken kids into their kids' classrooms, if only we'd just ask politely. I was accused of ignoring the plight of kids whose problem is that they are too gifted for their public schools, which is absolutely true. I certainly don't oppose the same kinds of programs for exceptionally gifted children as for those with disabilities. Not one bit. Why would I? It's simply not my fight, and it's not an issue that I know much about, so I didn't take it on. And best of all, I was even accused on one site of being a wealthy, pretentious snob, mostly because I have a hyphenated last name. Everyone knows that hyphens are plated in gold. I keep mine in a special vault.
But when someone posted at length last night about how my "feeble minded" child was destroying the schools for the rest of the kids, it bothered me. It bothered me even more when PajamasMedia deleted the comment today. The comment was rude, and it was vile. But it wasn't obscene and it wasn't threatening. I feel like perhaps they cut it because they were embarrassed by having one of their readers say something so ugly about a little girl, but I can also accept that they chose to delete the comment because they felt responsible for exposing Schuyler to something like that.
But they're wrong. They're not responsible. I am.
This blog and the upcoming book are going to open the door for all sorts of experiences for Schuyler, and while I expect most of them to be positive, we're prepared for the occasional ugliness as well. But in the case of PajamasMedia, I chose to go back into an arena that I knew from experience was likely to be hostile, and I took her with me. My only excuse is that I didn't think it through, and once again I underestimated the capacity for people to become animals when sitting safely and anonymously behind their keyboards.
Schuyler is a warrior, and she gives her monster a thorough beatdown on a regular basis. I suspect that if she were old enough to understand the worst of what was being said about her online, she'd simply fire up her Big Box of Words and send a two word response (hint: not "happy birthday") before going off to live her life, loudly and unhesitatingly.
Nevertheless, I invited more monsters into her home, and for that, I can only say that I was wrong to do so, and I am very, very sorry.
I owe an apology. To Schuyler.
The first time I wrote an article for PajamasMedia.com, I wasn't completely aware of just how conservative their readership was, but if I had gotten a better feel for the site, I probably would have written for them anyway. My own liberal outlook doesn't mean I'm closed to conservatives and their beliefs. One of Schuyler's most adamant and consistent supporters, going back for years, is standing out on the very leading edge of the right wing, his toes dangling happily in the wind. Julie's parents are pretty conservative, and few people do more for Schuyler on a daily basis than they do. One of the themes of my first essay on PajamasMedia, and a big chunk of the book as well, addresses how wrong I was to prejudge the conservatives of Plano in the first place. I don't believe that the issues surrounding special needs parenting fall into partisan ideological areas, any more than the monsters that stalk these kids do so according to how their parents vote.
Nevertheless, after some of the personal comments left on that first essay, I wrote a second essay with some hesitation, and sure enough, the reactions were incrementally worse. I wasn't bothered by the personal attacks this time, either, although I did make an attempt to clarify a few things and also to defend myself against one particularly dishonest remark. (And a reminder to the kids: RESPONDING TO TROLLS IS ALWAYS ALWAYS ALWAYS A MISTAKE.) I was accused of being bitter and rude, as if the opponents of inclusion would happily invite our broken kids into their kids' classrooms, if only we'd just ask politely. I was accused of ignoring the plight of kids whose problem is that they are too gifted for their public schools, which is absolutely true. I certainly don't oppose the same kinds of programs for exceptionally gifted children as for those with disabilities. Not one bit. Why would I? It's simply not my fight, and it's not an issue that I know much about, so I didn't take it on. And best of all, I was even accused on one site of being a wealthy, pretentious snob, mostly because I have a hyphenated last name. Everyone knows that hyphens are plated in gold. I keep mine in a special vault.
But when someone posted at length last night about how my "feeble minded" child was destroying the schools for the rest of the kids, it bothered me. It bothered me even more when PajamasMedia deleted the comment today. The comment was rude, and it was vile. But it wasn't obscene and it wasn't threatening. I feel like perhaps they cut it because they were embarrassed by having one of their readers say something so ugly about a little girl, but I can also accept that they chose to delete the comment because they felt responsible for exposing Schuyler to something like that.
But they're wrong. They're not responsible. I am.
This blog and the upcoming book are going to open the door for all sorts of experiences for Schuyler, and while I expect most of them to be positive, we're prepared for the occasional ugliness as well. But in the case of PajamasMedia, I chose to go back into an arena that I knew from experience was likely to be hostile, and I took her with me. My only excuse is that I didn't think it through, and once again I underestimated the capacity for people to become animals when sitting safely and anonymously behind their keyboards.
Schuyler is a warrior, and she gives her monster a thorough beatdown on a regular basis. I suspect that if she were old enough to understand the worst of what was being said about her online, she'd simply fire up her Big Box of Words and send a two word response (hint: not "happy birthday") before going off to live her life, loudly and unhesitatingly.
Nevertheless, I invited more monsters into her home, and for that, I can only say that I was wrong to do so, and I am very, very sorry.
December 8, 2007
You say it's your birthday
I've written another essay over at PajamasMedia, adapted from a recent blog entry on inclusion. Go check it out, since the comments might just end up having some schadenfreude value, if my last essay over there is any indication.
It's worth pointing out that while this is an issue which Julie and I are always ready to take up, it's one that Schuyler never faces, not directly. I'm not even sure if she realizes that there are people out there that don't want her around them, or their kids. Schuyler turns eight in two weeks, which is certainly old enough to understand that people can be dicks when you're different. Largely because of her family and her teachers and friends who take up that fight on her behalf, however, Schuyler strides forward largely unhindered, and for now she seems unaware that it could be any other way for her.
If you've ever watched curling (and really, who hasn't?), imagine Schuyler as the player who throws the stone, and the rest of us out there with our little brooms, clearing the ice for her. (Wait, or perhaps she's the stone in this metaphor. That seems unflattering, now that I think of it.)
Today is a double birthday whammy for us. It's Julie's actual birthday (for which I set her alarm clock stereo to play this poignant musical tribute this morning), but we're also having a joint birthday party for Schuyler and her best friend from her Box Class today. It's causing all sorts of happy confusion for her, but I'm sure it'll all sort itself out, and by the time her actual birthday rolls around, Schuyler will be ready to do it all over again.
(I got her a pterodactyl, by the way. She's digging pterodactyls these days, like only a dainty little girl can.)
The interesting thing about this birthday party is that when Schuyler and her friend get around neurotypical kids (and there'll be a lot of them at this party, maybe half the total number), they tend to blow them off and ignore them in favor of their own little world, one in which they communicate with either their devices or their own secret little language of Martian and special sign language. When Schuyler and her friends get together, inclusion gets turned on its head.
Which I find to be strangely satisfying, speaking of schadenfreude.
It's worth pointing out that while this is an issue which Julie and I are always ready to take up, it's one that Schuyler never faces, not directly. I'm not even sure if she realizes that there are people out there that don't want her around them, or their kids. Schuyler turns eight in two weeks, which is certainly old enough to understand that people can be dicks when you're different. Largely because of her family and her teachers and friends who take up that fight on her behalf, however, Schuyler strides forward largely unhindered, and for now she seems unaware that it could be any other way for her.
If you've ever watched curling (and really, who hasn't?), imagine Schuyler as the player who throws the stone, and the rest of us out there with our little brooms, clearing the ice for her. (Wait, or perhaps she's the stone in this metaphor. That seems unflattering, now that I think of it.)
Today is a double birthday whammy for us. It's Julie's actual birthday (for which I set her alarm clock stereo to play this poignant musical tribute this morning), but we're also having a joint birthday party for Schuyler and her best friend from her Box Class today. It's causing all sorts of happy confusion for her, but I'm sure it'll all sort itself out, and by the time her actual birthday rolls around, Schuyler will be ready to do it all over again.
(I got her a pterodactyl, by the way. She's digging pterodactyls these days, like only a dainty little girl can.)
The interesting thing about this birthday party is that when Schuyler and her friend get around neurotypical kids (and there'll be a lot of them at this party, maybe half the total number), they tend to blow them off and ignore them in favor of their own little world, one in which they communicate with either their devices or their own secret little language of Martian and special sign language. When Schuyler and her friends get together, inclusion gets turned on its head.
Which I find to be strangely satisfying, speaking of schadenfreude.
December 4, 2007
Stalkerpalooza '08: Lone Star Edition
For those of you living here in the fine, fine Republic, I am happy to announce the dates and details of my Texas book tour. Details can be found over here, but I'll be appearing in Plano, Dallas, Arlington, Houston, Austin and San Antonio.
I know it's early yet, but I wanted to give any deranged readers time to make room in their freezers for my head.
I share because I care.
(Seventy-six days and counting...)
---
UPDATE: Look, I got a write-up in Unfair Park, the blog affiliated with the Dallas Observer. The Observer is the weekly alternative paper in the Dallas area, and I've been reading it since I was in college, back when former Dallas mayor Laura Miller was a troublemaking Observer reporter. Showing up on the blog was a happy surprise.
I know it's early yet, but I wanted to give any deranged readers time to make room in their freezers for my head.
I share because I care.
(Seventy-six days and counting...)
---
UPDATE: Look, I got a write-up in Unfair Park, the blog affiliated with the Dallas Observer. The Observer is the weekly alternative paper in the Dallas area, and I've been reading it since I was in college, back when former Dallas mayor Laura Miller was a troublemaking Observer reporter. Showing up on the blog was a happy surprise.
December 3, 2007
November 29, 2007
Also available with the kung-fu grip
Living our lives in such a public way, even before the book, has occasionally led to some interesting and unique experiences, mostly centering around Schuyler. She gets to people, she emotionally affects people out there who never meet her except through my writing, and they express that connection in a variety of artistic ways. I can't even begin to tell you just how cool that can be.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
November 28, 2007
Harvey does not in fact want to eat you
As an ugly American, I haven't heard of any of the parties involved, including Heat Magazine, but the sentiments are familiar. Make fun of a kid with a disability, get called out for it, issue a heartfelt apology, hope that people start buying your product again.
Heat magazine apologises to Jordan for using disabled son on sticker.
I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.
Heat magazine apologises to Jordan for using disabled son on sticker.
I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.
November 26, 2007
Thirty-ten
You know, I can't complain too much about this birthday. I mean, this is the year my book comes out, after all, plus I'm still alive, having managed to avoid eating or drinking myself to death or being killed by internet stalkers. My hair is graying a little and thinning a little, but not too much of either.
Still, though.
November 20, 2007
November 19, 2007
I got some love
I got my first review, and I'm very pleased with it. Kirkus Reviews is an industry trade publication, available to libraries, bookstores and their buyers, magazines, media, etc. An article in the New York Times a few years ago referred to Kirkus as "a sort of Consumer Reports for the book publishing industry", and an appearance there can lead to other reviews, media attention, and general fancy pantsedness.
I'm just happy that the word "crap" doesn't appear anywhere within.
---
Kirkus Reviews
12/1/07
Rummel-Hudson, Robert
SCHUYLER’S MONSTER: A Father’s Journey with His Wordless Daughter
The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.
After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.
Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.
I'm just happy that the word "crap" doesn't appear anywhere within.
---
Kirkus Reviews
12/1/07
Rummel-Hudson, Robert
SCHUYLER’S MONSTER: A Father’s Journey with His Wordless Daughter
The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.
After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.
Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.
Dancing away the monster
Excerpt: "Ballerina dreams: A True Story"
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
November 17, 2007
Because "separate but equal" worked out so well the first time...
The following was posted on another site, in response to this. While it's unusually blunt, it nevertheless represents a viewpoint that I've heard many times before, in some form or another.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
Every special ed kid costs schools more money. They are incredibly expensive. Wealthy parents get lawyers and game the system for millions, and all the rest of the kids get inadequate educations that still cost more money.
They should be removed from the system and their education funded differently. Public schools should be reserved for the "neurotypical".
That doesn't mean they shouldn't receive funding; it should just come from a different pool of money–health care, probably.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
November 15, 2007
Sometimes it's not monsters that we fight
From the CCN website (which I usually visit for the guilty pleasure of reading about people being eaten by alligators and sharks and bears):
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
Tell me about it.
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
"Parents of children with severe disabilities are often the experts on their children. They're with them all the time."
The trick here, she says, is to stand firm, even when you know you're annoying the doctor.
"You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly. For example, Green could have asked why the doctor didn't want to use one of the other potent antibiotics.
Rackner says patients can keep in mind stock phrases they can use to make the conversations easier.
For example, she says, one way Green could have started the conversation is: "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7."
Tell me about it.
New Nomads
I wrote a little somethin' somethin' about special needs parenting for PajamasMedia, called The New Nomads: Families in Search of Special Education. Go check it out and spread the love.
Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.
---
Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...
Incidentally, the article features what may be my favorite photo of Schuyler and me. It takes a confident man to wear fairy wings. I think I make it work.
---
Edited to add: If you wonder why I almost never talk about politics anymore, go look at the comments being left on that article. Jesus Howard Christ...
November 14, 2007
I have choices!
So what is the thing that I should spend time fretting about today? The determination by the dealership that Julie's car is officially dead (turning us into a one-car family, with me working an hour away from Plano), or the fun fact that I do believe I am getting another kidney stone?
Decisions, decisions!
Decisions, decisions!
November 12, 2007
"Paths of Glory"
I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.
You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.
However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.
I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.
Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.
I did not receive a response. I did not require one.
-----
Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com
I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.
Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.
Robert Rummel-Hudson
Plano, TX
Money concerns force DSO to drop concert
Britten's 'Requiem' 'very expensive'
One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.
"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."
You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.
However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.
I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.
Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.
I did not receive a response. I did not require one.
-----
Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com
I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.
Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.
Robert Rummel-Hudson
Plano, TX
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