(A lot of people have been curious about the Big Box of Words, so maybe I'll make this a regular feature.)
Today at lunch, Schuyler grasped, using her device, two concepts that I hadn't really thought about but which I'd suspect are tricky for little kids. She spelled all these things out on the BBoW, and she pointed to Julie and me and herself to indicate who she was talking about.
So here's what Schuyler told us on her device today.
1) Her name is not just Schuyler, but Schuyler Hudson. She understands that both names refer to herself, and she taught herself how to spell it by looking at her medical alert dogtags.
2) My name is not just Daddy, but also Rob, and Mommy is Julie, too. I told her she could call us whatever she wanted (a position I've always taken, liberal hippie freakshow that I am), but she's going to stick with Mommy and Daddy for now.
She had her Barbie mermaid with her, and when we asked her what the doll's name was, she looked on the toy itself for clues. She found one and started typing happily on the BBoW, relieved to dodge the pressure of coming up with something by herself.
As a result, apparently her Barbie's name is Mattel. Nice to meet you.
May 28, 2006
Monster Girl
Schuyler and I were hanging out the other day, eating some cheese and watching television, and we stumbled across a Godzilla movie.
Schuyler loves monsters, and she loves dinosaurs. Godzilla is both. She was in a state of absolute joy.
The funny thing about this movie was that it was a fairly recent one, from 2001, but it took me a while to realize that. I mean, 2001 was just a few years ago; Peter Jackson's amazing effects for The Lord of the Rings were already in theaters, and yet Japanese Godzilla movies looked as cheap and crappy as ever. Some of the effects were passable, such as his atomic halitosis, but by and large it was still a guy in a big fat rubber suit, stomping around a tiny Japanese city like the Grimace. His face looked a little better, not so much like the Cookie Monster as past incarnations, but not much. I was actually charmed at how the Japanese must have a sort of fondness for bad Godzilla effects. Clearly, they could make a better looking monster, and choose not to.
Anyway, he was good enough for Schuyler. When Julie got home from work, Schuyler told her she saw a dinosaur on her device and then "raar"-ed around the apartment for the rest of the evening.
This is pretty representative of the kind of weekend Schuyler and I had together while Julie worked. I've talked about it before, but we have a vibe together that's unique to the time we're alone. When anyone else is around, Schuyler deals with the usual six year-old complicated social dynamics. But in our own ways we are broken, she and I, and so we give each other a break.
One thing I've never mentioned here, at least that I don't recall, is that Schuyler sleeps like the dead. At an early age, she started sleeping regular hours, and she goes to bed willingly, with a laugh, a story or two and a big sloppy kiss. Once she's out, that's it. She won't wake up until she's ready. If I get a late night phone call and I don't want to disturb Julie (who is a very light sleeper), I will actually take the call in Schuyler's room, while she sleeps. She never so much as stirs.
With this in mind, and the fact that I do my best writing when there aren't any distractions and haven't been getting all that much in the way of quality time with the book, we are considering getting Schuyler some kind of loft bed and putting a little writing desk underneath it for me. We'd share the space, and I'd spend late nights writing her book while she slept above me. It seems to make a perfect kind of sense.
I wonder sometimes if she and I would be as close as we are, as weirdly in sync, if it weren't for her monster. If she were a normal child, if I didn't have to listen and watch so closely and so patiently to understand what she was saying, would I love her as deeply as I do? Would she love me with the same energy, with the same constancy, if she didn't have to work so hard to build her own world and share it with me? I don't know. A broken, beautiful, silent Schuyler is the only one I've ever known. I wouldn't know what to do with any other kind, and so I love her with everything I am.
Schuyler loves monsters, something I suppose she got from me. Unlike myself, however, she doesn't seem to mind her own monster too much.
It's too bad she's already in bed. Kung Fu Hustle is on, and she'd love the beautiful mute girl. That, and all the fancy ass kicking. She is my pretty ninja, after all.
Schuyler loves monsters, and she loves dinosaurs. Godzilla is both. She was in a state of absolute joy.
The funny thing about this movie was that it was a fairly recent one, from 2001, but it took me a while to realize that. I mean, 2001 was just a few years ago; Peter Jackson's amazing effects for The Lord of the Rings were already in theaters, and yet Japanese Godzilla movies looked as cheap and crappy as ever. Some of the effects were passable, such as his atomic halitosis, but by and large it was still a guy in a big fat rubber suit, stomping around a tiny Japanese city like the Grimace. His face looked a little better, not so much like the Cookie Monster as past incarnations, but not much. I was actually charmed at how the Japanese must have a sort of fondness for bad Godzilla effects. Clearly, they could make a better looking monster, and choose not to.
Anyway, he was good enough for Schuyler. When Julie got home from work, Schuyler told her she saw a dinosaur on her device and then "raar"-ed around the apartment for the rest of the evening.
This is pretty representative of the kind of weekend Schuyler and I had together while Julie worked. I've talked about it before, but we have a vibe together that's unique to the time we're alone. When anyone else is around, Schuyler deals with the usual six year-old complicated social dynamics. But in our own ways we are broken, she and I, and so we give each other a break.
One thing I've never mentioned here, at least that I don't recall, is that Schuyler sleeps like the dead. At an early age, she started sleeping regular hours, and she goes to bed willingly, with a laugh, a story or two and a big sloppy kiss. Once she's out, that's it. She won't wake up until she's ready. If I get a late night phone call and I don't want to disturb Julie (who is a very light sleeper), I will actually take the call in Schuyler's room, while she sleeps. She never so much as stirs.
With this in mind, and the fact that I do my best writing when there aren't any distractions and haven't been getting all that much in the way of quality time with the book, we are considering getting Schuyler some kind of loft bed and putting a little writing desk underneath it for me. We'd share the space, and I'd spend late nights writing her book while she slept above me. It seems to make a perfect kind of sense.
I wonder sometimes if she and I would be as close as we are, as weirdly in sync, if it weren't for her monster. If she were a normal child, if I didn't have to listen and watch so closely and so patiently to understand what she was saying, would I love her as deeply as I do? Would she love me with the same energy, with the same constancy, if she didn't have to work so hard to build her own world and share it with me? I don't know. A broken, beautiful, silent Schuyler is the only one I've ever known. I wouldn't know what to do with any other kind, and so I love her with everything I am.
Schuyler loves monsters, something I suppose she got from me. Unlike myself, however, she doesn't seem to mind her own monster too much.
It's too bad she's already in bed. Kung Fu Hustle is on, and she'd love the beautiful mute girl. That, and all the fancy ass kicking. She is my pretty ninja, after all.
May 26, 2006
PSA
If you've sent me an email in the past few days and haven't received a reply, please send it again. I have my email back up and running, but I couldn't save the messages I'd already received.
(Note to Stephanie in San Antonio: Your email was one of the very last I got before The Crash, so I didn't get a chance to say thank you. Send again, please!)
Still picking up the pieces here...
(Note to Stephanie in San Antonio: Your email was one of the very last I got before The Crash, so I didn't get a chance to say thank you. Send again, please!)
Still picking up the pieces here...
May 25, 2006
Death Takes an iBook on Holiday
Well, my laptop's reprieve was apparently a temporary one, like that moment when the body twitches and you think it's still alive, but alas, it's just a last little bit of electricity in the brain stem.
I do believe the iBook is dead.
I backed up my book about a week ago, so the worst case scenario there is that I lost a few pages written since then. I lost some video and photo work I've been doing, but that was all backed up as well, so thanks to some inexplicably responsible behavior on my part, data loss shouldn't precipitate a great weeping in the land.
This may take a little time to sort out, though. Guess I'll actually go outside and see the sun this weekend. Stupid sun.
I do believe the iBook is dead.
I backed up my book about a week ago, so the worst case scenario there is that I lost a few pages written since then. I lost some video and photo work I've been doing, but that was all backed up as well, so thanks to some inexplicably responsible behavior on my part, data loss shouldn't precipitate a great weeping in the land.
This may take a little time to sort out, though. Guess I'll actually go outside and see the sun this weekend. Stupid sun.
May 24, 2006
Ten Things
(Originally written for Diabetes Notes, but I thought I'd share.)
Here are some things I've learned from my three months as a diabetic.
1) Aspartame makes my blood sugar go all funky.
2) Splenda makes me feel (in the best possible way) like I'm cheating on my diet, and does not appear to make my blood sugar freak out or my liver turn to stone or my brain explode or whatever I keep reading is supposed to happen to me when I eat it.
3) Because of 1), I am sad to part ways with Diet Dr Pepper, alas. I mean, I'm saying goodbye to most diet drinks, but Diet Dr Pepper is the only one that did not taste like it was made with butt.
4) Because of 2), I am now entering into a beautiful long-term relationship with Diet 7-Up, Diet Big Red (which tastes VERY guilty, and probably not what you'd expect a grownup to drink), Sugar Free Jello Pudding (chocolate and the ever elusive vanilla, which I might actually push over an old person to get to if she was standing in front of the display at the grocery store) and Breyer's Carb Smart fake ice cream (but only chocolate; the other flavors are weird, like what an alien might come up with if he were trying to make ice cream back on Mars).
5) As long as I am on a double dose of Glucophage, I should probably stop scheduling important things in the morning. I need that time to sit and be an 80 year-old man for a while.
6) When buying a bicycle for exercise, getting a big heavy one-speed beach cruiser? Pretty fabulously stupid. I'm going to trade up to something practical.
7) When your bike is big and stupid and impractical and hurts to ride up hills? You tend to find excuses not to ride it.
8) When your ass starts expanding for seemingly no reason, see 7).
9) There are some people out there with some pretty strange ideas about diabetes. Every last one of them has a cure for you, if you'll just listen and follow their bizarre advice.
10) Man, I miss pasta.
Here are some things I've learned from my three months as a diabetic.
1) Aspartame makes my blood sugar go all funky.
2) Splenda makes me feel (in the best possible way) like I'm cheating on my diet, and does not appear to make my blood sugar freak out or my liver turn to stone or my brain explode or whatever I keep reading is supposed to happen to me when I eat it.
3) Because of 1), I am sad to part ways with Diet Dr Pepper, alas. I mean, I'm saying goodbye to most diet drinks, but Diet Dr Pepper is the only one that did not taste like it was made with butt.
4) Because of 2), I am now entering into a beautiful long-term relationship with Diet 7-Up, Diet Big Red (which tastes VERY guilty, and probably not what you'd expect a grownup to drink), Sugar Free Jello Pudding (chocolate and the ever elusive vanilla, which I might actually push over an old person to get to if she was standing in front of the display at the grocery store) and Breyer's Carb Smart fake ice cream (but only chocolate; the other flavors are weird, like what an alien might come up with if he were trying to make ice cream back on Mars).
5) As long as I am on a double dose of Glucophage, I should probably stop scheduling important things in the morning. I need that time to sit and be an 80 year-old man for a while.
6) When buying a bicycle for exercise, getting a big heavy one-speed beach cruiser? Pretty fabulously stupid. I'm going to trade up to something practical.
7) When your bike is big and stupid and impractical and hurts to ride up hills? You tend to find excuses not to ride it.
8) When your ass starts expanding for seemingly no reason, see 7).
9) There are some people out there with some pretty strange ideas about diabetes. Every last one of them has a cure for you, if you'll just listen and follow their bizarre advice.
10) Man, I miss pasta.
May 21, 2006
"and the seeds falling softly from the branches of the trees..."
Things aren't always going to be like this.
One day, when things turn around and I can afford it, I am going to have a small piece of jewelry commissioned for Schuyler. I envision something like the work of Jeanine Payer, except within normal human price range. Perhaps I'll find an up-and-coming jewelry artist who'll take on the work one day.
The quote that I want for Schuyler is, perhaps predictably, from the lyrics to an Andrew Bird song (although actually, it's a cover of a Handsome Family song) called "Don't Be Scared". It seems to me to be about an imaginative child who, for whatever reason, lives in an internal world.
I have one of those children.
Whenever Paul thinks of rain, swallows fall in a wave and tap on his window with their beaks. Whenever Paul thinks of snow, soft winds blow round his head and his phone rings just once late at night-like a bird calling out, "Wake up, Paul. Don't be scared. Don't believe you're all alone." "Wake up, Paul," whisper clouds rolling by and the seeds falling softly from the branches of the trees.
Don't be scared. Don't believe you're all alone.
I want her to have those words for the rest of her life, always to remind her that she'll never be alone. I hope that's true, too.
One day, when things turn around and I can afford it, I am going to have a small piece of jewelry commissioned for Schuyler. I envision something like the work of Jeanine Payer, except within normal human price range. Perhaps I'll find an up-and-coming jewelry artist who'll take on the work one day.
The quote that I want for Schuyler is, perhaps predictably, from the lyrics to an Andrew Bird song (although actually, it's a cover of a Handsome Family song) called "Don't Be Scared". It seems to me to be about an imaginative child who, for whatever reason, lives in an internal world.
I have one of those children.
Whenever Paul thinks of rain, swallows fall in a wave and tap on his window with their beaks. Whenever Paul thinks of snow, soft winds blow round his head and his phone rings just once late at night-like a bird calling out, "Wake up, Paul. Don't be scared. Don't believe you're all alone." "Wake up, Paul," whisper clouds rolling by and the seeds falling softly from the branches of the trees.
Don't be scared. Don't believe you're all alone.
I want her to have those words for the rest of her life, always to remind her that she'll never be alone. I hope that's true, too.
May 19, 2006
Blast from the past
(I tried to figure out how to embed this video in this post, but my brain went "Bzzzzt" fairly quickly.)
I was cleaning off an old drive and stumbled across this little Quicktime video of Schuyler during the summer of 2002, when she was about two and a half.
Good lord, she's grown a lot.
That was back before we knew about her monster, or how profoundly it was going to change her world (and ours) one short year later. It's weird, thinking back on that time.
I was cleaning off an old drive and stumbled across this little Quicktime video of Schuyler during the summer of 2002, when she was about two and a half.
Good lord, she's grown a lot.
That was back before we knew about her monster, or how profoundly it was going to change her world (and ours) one short year later. It's weird, thinking back on that time.
Could be worse. Could be raining.
So let me just put this out there.
I'm not having a swell week.
I had a blood sugar incident two days ago in which, despite doing everything the right way, my blood glucose level reached a dangerous level. Because of this, I have now had my daily dosage of Glucophage doubled. So far, this horse pill double whammy does not seem to have a very marked impact on my blood sugar, but it does leave me feeling nauseous and wiped out, like a puppet who has just gone from being animated and lively to being discarded in the toybox for the night.
My dental adventure has left us financially... anxious. I think that's a nice way to put it.
We're trying to find an affordable, non-thug-filled program for Schuyler for the summer, but those two criteria don't appear to cross paths very often in North Dallas. She might end up needing that shiv after all.
And Julie got so scared by my blood sugar incident that she cried. Hard. I think it's all starting to weigh down on her, too.
So yeah. Here's to next week.
I'm not having a swell week.
I had a blood sugar incident two days ago in which, despite doing everything the right way, my blood glucose level reached a dangerous level. Because of this, I have now had my daily dosage of Glucophage doubled. So far, this horse pill double whammy does not seem to have a very marked impact on my blood sugar, but it does leave me feeling nauseous and wiped out, like a puppet who has just gone from being animated and lively to being discarded in the toybox for the night.
My dental adventure has left us financially... anxious. I think that's a nice way to put it.
We're trying to find an affordable, non-thug-filled program for Schuyler for the summer, but those two criteria don't appear to cross paths very often in North Dallas. She might end up needing that shiv after all.
And Julie got so scared by my blood sugar incident that she cried. Hard. I think it's all starting to weigh down on her, too.
So yeah. Here's to next week.
Big Box of Words
As promised, it's time for a little primer on Schuyler's Big Box of Words. ("Little" obviously being a relative term.)
The BBoW is actually a Prentke Romich Vantage Plus augmentative alternative communication device. The BBoW is smaller in screen area than a laptop but is in a heavy, durable plastic case that can deal with the kind of gentle, loving care that a six year-old is known for. It uses an interactive dynamic display that responds to touch, even when coated with mac and cheese. The device weighs about four pounds and has a clear cover (with lots of stickers) to protect its screen, as well as a shoulder strap. Because the screen is very bright and is in use for most of the day, the BBoW requires overnight recharging most evenings, after Schuyler goes to bed.
The BBoW is programmed using a communication language called Unity. It has an expandable vocabulary of about three thousand words and can be programmed to function at a number of different levels, from a remedial level for beginners and profoundly impaired kids to an advanced level suitable for adults. The system uses a combination of pictures and words to build sentences and give choices and ultimately teach language. Certain choices prompt the device to change the menu options to make communication easier and show the user how language works smoothly.
For example, if Schuyler wanted to say that she wants to have spaghetti for dinner, she would hit a button with a little girl on it for "I" (rather than ones for "you", "he", etc.) and then a little icon with a criminal in stripey clothes ("want"; get it?), followed by a button with the word "to" and then a button with a picture of an apple. As she does so, a screen at the top of the BBoW fills in the words as she selects them. "I want to eat..."
When she hits the apple button, the screen changes. The top row now shows a list of meal types. She selects "dinner" and it changes again, showing different types of dinner menus. She selects "Italian" and then, from the next screen, spaghetti. When she's got her sentence constructed, she touches the area at the top of the screen where the string of words has been forming, and the device speaks the sentence for her.
"I want to eat spaghetti."
The voice that speaks is computerized and sounds more or less like a child. One complaint that I have with the device is that even though I assume most of the people who use them are fairly young, there aren't that many child voices available, and so I think every kid in Schuyler's class sounds the same, using the "Kit" voice. Even among people using the same voice, however, there are programmable variations in pitch and variance and speed that can personalize the voice further. Our original PRC rep told me that she can tell which of her clients is calling her on the phone just from these settings.
Let's discuss Schuyler's school. On another blog, some swell anonymous person descended from the upper branches of the Assmonkey Forest long enough to suggest that we must have pulled a fast one on the world since we raised all that money to buy Schuyler a device when she attends a school district that will provide the devices for its students.
Two points about that. First of all, when Schuyler first began using the BBoW, we didn't live in North Dallas. We lived near Austin, and the small school district where Schuyler attended was unwilling to help purchase the device that we considered appropriate for Schuyler. They said she'd never be capable of using it. I'd like to say she proved them wrong when we moved to North Dallas and placed her in a proper learning environment, but she was using it far beyond what her school thought possible a few weeks after she started using it. We had no idea that the local schools had a program for device users at that time. (There were only four in the country, although I'll bet there are more now.) It was several months later that we found out about the program and decided to risk everything and move to North Dallas so that Schuyler could attend her Box Class. By the time she started in that class, she had already been using her BBoW for about four months.
Secondly, if we ever decide to leave North Dallas and the school district here, she won't lose her BBoW. That's unlikely, but not impossible; today I found out from a friend who works as a nanny here that one of her charges, a four year-old, was pulled from her pre-school class because other four and five year-olds were making death threats to her. Apparently that's not as rare as you might expect. North Dallas has a reputation for having the best schools in Texas, but it is also infamous in this state for having horrible, nasty children. The Box Class is supposed to be a three-year program, after which time Schuyler will hopefully be able to attend mostly mainstream classes. We'd like her to stay in the North Dallas schools, but not if she has to make a shiv in shop class just to protect herself. I thought all this consideration was far far in the future until I was told about these four year-old kids threatening to cut another kid's throat, "and not pretend". Seriously.
So Schuyler's device is her own. She takes it most places, either on her shoulder or in her backpack. (Or on the shoulder of one of her parents if she can scam us into carrying it for her.) She does not carry it on the playground or to the swimming pool, places like that where it could be damaged. She also doesn't use it in bright sunlight where the screen is impossible to read. She takes it almost everywhere but won't keep it out to use if we're at a movie, for example. She uses it to order her own food at restaurants, something we insist on now even though it makes some waiters and waitresses uncomfortable. Fuck 'em.
In addition to the picture- and word-guided sentence construction, Schuyler uses her device to practice her spelling, which she loves to do, and also numbers and math. She was showing off her addition skills the other night at dinner, for example. She sees words and spells them out on a section of the BBoW that gives her a screen with the alphabet on which she can spell whatever she likes. She loves spelling things out and will often use this page to say things that she can just as easily find pictures for on other parts of the device.
She explores on her device constantly. She found a page with body parts one day while we were all driving somewhere once. Nothing like hearing the word "penis" come floating up from the back seat out of nowhere. She also found the word "yikes" on the BBoW, which was sort of a random thing to hear her say. To her credit, she used it properly.
Someone left a comment once suggesting that we should refer to it as her "voice" or "words" rather than her device. Both we and Schuyler's teachers refer to the BBoW as Schuyler's device, not her voice. Schuyler uses several different forms of communication, including the BBoW, sign language and even some limited verbal communication, and she understands the difference between them all. No baby talk is required.
How smart is Schuyler? No one knows. It is almost impossible to measure the IQ of a non-verbal child, and even testing by a skilled pediatric psychiatrist is a very subjective affair that we don't feel compelled to put her through at this time. She is clearly behind other kids her age but in the year that she's had the device, she's made good progress. I am convinced that she is of normal intelligence, and as she finds her voice, she'll continue to catch up.
I also predict that she'll eventually learn to swear on the BBoW, probably sooner than her teachers will like. Well, I can dream my little dream.
The BBoW is actually a Prentke Romich Vantage Plus augmentative alternative communication device. The BBoW is smaller in screen area than a laptop but is in a heavy, durable plastic case that can deal with the kind of gentle, loving care that a six year-old is known for. It uses an interactive dynamic display that responds to touch, even when coated with mac and cheese. The device weighs about four pounds and has a clear cover (with lots of stickers) to protect its screen, as well as a shoulder strap. Because the screen is very bright and is in use for most of the day, the BBoW requires overnight recharging most evenings, after Schuyler goes to bed.
The BBoW is programmed using a communication language called Unity. It has an expandable vocabulary of about three thousand words and can be programmed to function at a number of different levels, from a remedial level for beginners and profoundly impaired kids to an advanced level suitable for adults. The system uses a combination of pictures and words to build sentences and give choices and ultimately teach language. Certain choices prompt the device to change the menu options to make communication easier and show the user how language works smoothly.
For example, if Schuyler wanted to say that she wants to have spaghetti for dinner, she would hit a button with a little girl on it for "I" (rather than ones for "you", "he", etc.) and then a little icon with a criminal in stripey clothes ("want"; get it?), followed by a button with the word "to" and then a button with a picture of an apple. As she does so, a screen at the top of the BBoW fills in the words as she selects them. "I want to eat..."
When she hits the apple button, the screen changes. The top row now shows a list of meal types. She selects "dinner" and it changes again, showing different types of dinner menus. She selects "Italian" and then, from the next screen, spaghetti. When she's got her sentence constructed, she touches the area at the top of the screen where the string of words has been forming, and the device speaks the sentence for her.
"I want to eat spaghetti."
The voice that speaks is computerized and sounds more or less like a child. One complaint that I have with the device is that even though I assume most of the people who use them are fairly young, there aren't that many child voices available, and so I think every kid in Schuyler's class sounds the same, using the "Kit" voice. Even among people using the same voice, however, there are programmable variations in pitch and variance and speed that can personalize the voice further. Our original PRC rep told me that she can tell which of her clients is calling her on the phone just from these settings.
Let's discuss Schuyler's school. On another blog, some swell anonymous person descended from the upper branches of the Assmonkey Forest long enough to suggest that we must have pulled a fast one on the world since we raised all that money to buy Schuyler a device when she attends a school district that will provide the devices for its students.
Two points about that. First of all, when Schuyler first began using the BBoW, we didn't live in North Dallas. We lived near Austin, and the small school district where Schuyler attended was unwilling to help purchase the device that we considered appropriate for Schuyler. They said she'd never be capable of using it. I'd like to say she proved them wrong when we moved to North Dallas and placed her in a proper learning environment, but she was using it far beyond what her school thought possible a few weeks after she started using it. We had no idea that the local schools had a program for device users at that time. (There were only four in the country, although I'll bet there are more now.) It was several months later that we found out about the program and decided to risk everything and move to North Dallas so that Schuyler could attend her Box Class. By the time she started in that class, she had already been using her BBoW for about four months.
Secondly, if we ever decide to leave North Dallas and the school district here, she won't lose her BBoW. That's unlikely, but not impossible; today I found out from a friend who works as a nanny here that one of her charges, a four year-old, was pulled from her pre-school class because other four and five year-olds were making death threats to her. Apparently that's not as rare as you might expect. North Dallas has a reputation for having the best schools in Texas, but it is also infamous in this state for having horrible, nasty children. The Box Class is supposed to be a three-year program, after which time Schuyler will hopefully be able to attend mostly mainstream classes. We'd like her to stay in the North Dallas schools, but not if she has to make a shiv in shop class just to protect herself. I thought all this consideration was far far in the future until I was told about these four year-old kids threatening to cut another kid's throat, "and not pretend". Seriously.
So Schuyler's device is her own. She takes it most places, either on her shoulder or in her backpack. (Or on the shoulder of one of her parents if she can scam us into carrying it for her.) She does not carry it on the playground or to the swimming pool, places like that where it could be damaged. She also doesn't use it in bright sunlight where the screen is impossible to read. She takes it almost everywhere but won't keep it out to use if we're at a movie, for example. She uses it to order her own food at restaurants, something we insist on now even though it makes some waiters and waitresses uncomfortable. Fuck 'em.
In addition to the picture- and word-guided sentence construction, Schuyler uses her device to practice her spelling, which she loves to do, and also numbers and math. She was showing off her addition skills the other night at dinner, for example. She sees words and spells them out on a section of the BBoW that gives her a screen with the alphabet on which she can spell whatever she likes. She loves spelling things out and will often use this page to say things that she can just as easily find pictures for on other parts of the device.
She explores on her device constantly. She found a page with body parts one day while we were all driving somewhere once. Nothing like hearing the word "penis" come floating up from the back seat out of nowhere. She also found the word "yikes" on the BBoW, which was sort of a random thing to hear her say. To her credit, she used it properly.
Someone left a comment once suggesting that we should refer to it as her "voice" or "words" rather than her device. Both we and Schuyler's teachers refer to the BBoW as Schuyler's device, not her voice. Schuyler uses several different forms of communication, including the BBoW, sign language and even some limited verbal communication, and she understands the difference between them all. No baby talk is required.
How smart is Schuyler? No one knows. It is almost impossible to measure the IQ of a non-verbal child, and even testing by a skilled pediatric psychiatrist is a very subjective affair that we don't feel compelled to put her through at this time. She is clearly behind other kids her age but in the year that she's had the device, she's made good progress. I am convinced that she is of normal intelligence, and as she finds her voice, she'll continue to catch up.
I also predict that she'll eventually learn to swear on the BBoW, probably sooner than her teachers will like. Well, I can dream my little dream.
May 17, 2006
Podzilla
A quick note to say that I have been featured once again over at the very cool Quirky Nomads, so if you'd like to hear me mutter my way through a blog entry (and really, why wouldn't you?), go give it a listen.
And I'd like to thank Sage for editing out the part where I said that my blog was "available online, which is where you'll find most blogs, I think". Although I'll always share my more idiotic moments with you fine folks.
And I'd like to thank Sage for editing out the part where I said that my blog was "available online, which is where you'll find most blogs, I think". Although I'll always share my more idiotic moments with you fine folks.
May 15, 2006
Living in the light
One of the most positive and yet disquieting things about writing what I write online is hearing from other parents of kids with CBPS or one of its related polymicrogyria (PMG) disorders. It's disquieting for the same reason that it's postive, wonderful even. There just aren't very many of us. Really not at all.
Think about it. When Schuyler was diagnosed with her monster in the Summer of 2003, there were supposedly no more than about forty documented cases worldwide. Forty. There have been more U.S. presidents than there were diagnosed Congenital Bilateral Perisylvian Syndrome sufferers in 2003. A city bus could have carried them all, and these were cases scattered around the world. About the same time Schuyler was diagnosed, the first CBPS case in Asia had just been identified. THE FIRST IN ASIA. Asia's got a lot of people, I hear.
As more doctors became aware of PMG and learned how to identify it with a brain scan, the numbers increased. By the time Schuyler had her appointment at the University of Chicago in 2005, that number had grown to about three hundred, roughly the size of a college marching band. (I imagine Schuyler standing in the tuba section.) I'd guess that in the year and a half since then, the number has probably topped a thousand.
Out of a world population of 6.5 billion people.
Without the internet, I suspect we could go our whole lives without ever meeting another person outside of the University of Chicago who had even heard of Schuyler's monster, let alone anyone who had it or who had a family member with it. With the internet, and with all the writing I've done about Schuyler, I meet parents all the time. I have even heard from a young lady who had a mild form of it.
It's a tricky dance. Recently, a few people have been asking to know more about Schuyler's use of her Big Box of Words. At first I was surprised by this, because I felt like I'd been writing about it a lot. Maybe I just feel that way because I've been covering it in the book, but perhaps not so much here. I'll sit down in the next day or two and write something at length about it, because it really is pretty interesting and she's doing very very well on it.
But a few messages that I either received in email or didn't make public said that not only were people interested, but they had the right to DEMAND to know more because they had given money to help buy the device. I have to be honest, it was a little creepy. In their eyes, donating to Schuyler's device fund meant that they were somehow buying the right to dictate how much of Schuyler's privacy I violate here.
And I do violate her privacy, a lot. It's something I think about fairly frequently, and I've had reservations all along. But in the end, it's my choice, and Julie's, and one day it will be hers. If I get published, she'll be known at least in some small way as "The Mute Girl Who Was In A Book", which will have a lot more impact on her than anything on the web, but still. She may one day ask for all of this to come down, and if she does, then you'll come here and find a blank page, simple as that.
I hope it doesn't happen, though, because I think Schuyler's life has been enriched by the people who have come to know her through these pages. It's like she has the world's largest extended family, and without the embarrassing drunks you deal with at the holidays. Well, you know. Not since I had to stop drinking.
More than that, though, I think the biggest loss to the world if Schuyler ever decides to go offline would be to the people who come to the internet with a new CBPS diagnosis in their hand. They come looking for something scientific, something that will give them hope, and the world of Schuyler's monster is still small enough that most of them find her pretty quickly instead.
They go out looking for hope, but I'm here to tell you, there's not much of it out there. Scary stories about seizures and choking and retardation, and death. That's what we found in the summer of 2003. But now, they can also find a little girl with purple hair and a King Kong fixation who talks with a robot voice and lives her life turned up to eleven. They can see that the future may have just gotten different from the one they imagined, but it didn't lose its possibilities.
And while I'd love to take credit for that, the truth is that I just hold her up to the light. Schuyler is the one who inspires.
I recently heard from a mother who had just gotten a PMG diagnosis for her little four year-old daughter and who discovered Schuyler when she went looking for info. We exchanged a few emails, and she sent me a photograph of her daughter. One thing that I found fascinating about the pretty little girl in the photo was that just like Schuyler, there was nothing that indicated that this child was broken. I suspect that she lives in a world much like Schuyler's, where others sense that she's different but don't know why, and are enchanted rather than repelled.
But the really interesting thing about the photo is how much she actually looks like Schuyler. Dark features where Schuyler's are fair, but with the same big, slightly sleepy eyes, the same little rosebud lips and the same cheeks. I'm not sure if it's just a coincidence, or if somehow this is the gentle stamp that Schuyler's monster leaves on her and her new-found doppelgänger.
Fortunately for them, it's not a telltale physical trait that cruelly brands a face or a gait the way that so many broken children wear their own monsters, but an ethereal beauty that draws you into their strange, wordless world, whether you want to or not.
So yeah. I hope she decides to live in the light for a while.
Think about it. When Schuyler was diagnosed with her monster in the Summer of 2003, there were supposedly no more than about forty documented cases worldwide. Forty. There have been more U.S. presidents than there were diagnosed Congenital Bilateral Perisylvian Syndrome sufferers in 2003. A city bus could have carried them all, and these were cases scattered around the world. About the same time Schuyler was diagnosed, the first CBPS case in Asia had just been identified. THE FIRST IN ASIA. Asia's got a lot of people, I hear.
As more doctors became aware of PMG and learned how to identify it with a brain scan, the numbers increased. By the time Schuyler had her appointment at the University of Chicago in 2005, that number had grown to about three hundred, roughly the size of a college marching band. (I imagine Schuyler standing in the tuba section.) I'd guess that in the year and a half since then, the number has probably topped a thousand.
Out of a world population of 6.5 billion people.
Without the internet, I suspect we could go our whole lives without ever meeting another person outside of the University of Chicago who had even heard of Schuyler's monster, let alone anyone who had it or who had a family member with it. With the internet, and with all the writing I've done about Schuyler, I meet parents all the time. I have even heard from a young lady who had a mild form of it.
It's a tricky dance. Recently, a few people have been asking to know more about Schuyler's use of her Big Box of Words. At first I was surprised by this, because I felt like I'd been writing about it a lot. Maybe I just feel that way because I've been covering it in the book, but perhaps not so much here. I'll sit down in the next day or two and write something at length about it, because it really is pretty interesting and she's doing very very well on it.
But a few messages that I either received in email or didn't make public said that not only were people interested, but they had the right to DEMAND to know more because they had given money to help buy the device. I have to be honest, it was a little creepy. In their eyes, donating to Schuyler's device fund meant that they were somehow buying the right to dictate how much of Schuyler's privacy I violate here.
And I do violate her privacy, a lot. It's something I think about fairly frequently, and I've had reservations all along. But in the end, it's my choice, and Julie's, and one day it will be hers. If I get published, she'll be known at least in some small way as "The Mute Girl Who Was In A Book", which will have a lot more impact on her than anything on the web, but still. She may one day ask for all of this to come down, and if she does, then you'll come here and find a blank page, simple as that.
I hope it doesn't happen, though, because I think Schuyler's life has been enriched by the people who have come to know her through these pages. It's like she has the world's largest extended family, and without the embarrassing drunks you deal with at the holidays. Well, you know. Not since I had to stop drinking.
More than that, though, I think the biggest loss to the world if Schuyler ever decides to go offline would be to the people who come to the internet with a new CBPS diagnosis in their hand. They come looking for something scientific, something that will give them hope, and the world of Schuyler's monster is still small enough that most of them find her pretty quickly instead.
They go out looking for hope, but I'm here to tell you, there's not much of it out there. Scary stories about seizures and choking and retardation, and death. That's what we found in the summer of 2003. But now, they can also find a little girl with purple hair and a King Kong fixation who talks with a robot voice and lives her life turned up to eleven. They can see that the future may have just gotten different from the one they imagined, but it didn't lose its possibilities.
And while I'd love to take credit for that, the truth is that I just hold her up to the light. Schuyler is the one who inspires.
I recently heard from a mother who had just gotten a PMG diagnosis for her little four year-old daughter and who discovered Schuyler when she went looking for info. We exchanged a few emails, and she sent me a photograph of her daughter. One thing that I found fascinating about the pretty little girl in the photo was that just like Schuyler, there was nothing that indicated that this child was broken. I suspect that she lives in a world much like Schuyler's, where others sense that she's different but don't know why, and are enchanted rather than repelled.
But the really interesting thing about the photo is how much she actually looks like Schuyler. Dark features where Schuyler's are fair, but with the same big, slightly sleepy eyes, the same little rosebud lips and the same cheeks. I'm not sure if it's just a coincidence, or if somehow this is the gentle stamp that Schuyler's monster leaves on her and her new-found doppelgänger.
Fortunately for them, it's not a telltale physical trait that cruelly brands a face or a gait the way that so many broken children wear their own monsters, but an ethereal beauty that draws you into their strange, wordless world, whether you want to or not.
So yeah. I hope she decides to live in the light for a while.
May 13, 2006
You have questions.
Answers to your questions!
Okay -- my first question is I want to know more about those graphics from Luke Chueh that you keep using to illustrate -- perfectly -- the theme of a particular post.
Luke Chueh is a California artist whose work I absolutely love. He puts cute, melancholy characters in often macabre situations. And no, I don't actually have permission to use his images here, but one day I hope to make up for that by purchasing some of his art.
If you like it and want to spend some money, just let me know that I was responsible for you finding (and paying) him. It'll get my karma off the hook.
-----
What is Julie's favorite TV show?
I know I give her a lot of shit about watching Gilmore Girls (and for good reason -- the show sucks), but without asking her, I'd have to say that it's probably a tossup between Lost and Grey's Anatomy, either of which I'd take over GG any time.
She also watches an odd show on Bravo about this rabbi who drives around helping extremely fucked up families find "shalom in the home". It's just weird enough to watch.
-----
I'd like to hear more about Julie. Does she like to write? Does she have a blog? Maybe some guest entries.
Ha. She hates writing and refuses to contribute. Trust me, I've asked.
I've been toying with the idea of doing a podcast, and if I do, I'll make her get involved.
-----
I would like to know if you're ever going to get a tuba. Also I would like to know what your favorite color is, if you have an accent, why the sky is blue, who makes you laugh, and is it faster to get the New York than by car.
I'd love a tuba, but man oh man, they're not cheap, even the used ones. My favorite color is yellow. I lost my Texas accent when I moved away in 1997 but I'm getting it back, I think. The sky is blue because if it was green, you wouldn't know when to stop mowing the grass. Schuyler makes me laugh; she's legitimately funny, like a grownup. If you're asking about professional comedians, I'd say people like David Cross, Jon Stewart and Ricky Gervais. The New York thing? I'm not quite sure what you're asking, so I'll say "No".
-----
Are you and Julie going to have more babies cause the one you have now is pretty stinkin' awesome and cute???? We need more cool people in the world!
She is pretty awesome, and entirely unique. And that's part of the problem.
Schuyler's monster is almost certainly genetic. It's not entirely clear what the chances are of it recurring -- Yale said one in four, while the University of Chicago thinks it might be as low as seven percent -- but the risk is there, and there are no guarantees that the next time around would bring the same level of severity.
Schuyler's CBPS is not nearly as bad as a lot of kids, most of whom have some level of physical impairment and mental retardation that Schuyler does not have. A lot of them die.
So yeah. If it were a risk of having another child who in the worst case scenario is just like Schuyler, I don't know, we might consider it. But the worst case scenario is pretty bad. No thanks.
-----
I want to know what happened with your eye and Buddy. What did Dr. Hottie say?
She said my eye is fine and that blood sugar fluctuations can cause flashes like that. She's also sending me to a team of ophthalmologists just to be sure. And she called me a young patient again. Oh yeah.
-----
Why don't we hear more about Schuyler using her big box of words? Is it too complicated for her to use or is she just not that interested yet?
You're kidding, right?
Okay -- my first question is I want to know more about those graphics from Luke Chueh that you keep using to illustrate -- perfectly -- the theme of a particular post.
Luke Chueh is a California artist whose work I absolutely love. He puts cute, melancholy characters in often macabre situations. And no, I don't actually have permission to use his images here, but one day I hope to make up for that by purchasing some of his art.
If you like it and want to spend some money, just let me know that I was responsible for you finding (and paying) him. It'll get my karma off the hook.
-----
What is Julie's favorite TV show?
I know I give her a lot of shit about watching Gilmore Girls (and for good reason -- the show sucks), but without asking her, I'd have to say that it's probably a tossup between Lost and Grey's Anatomy, either of which I'd take over GG any time.
She also watches an odd show on Bravo about this rabbi who drives around helping extremely fucked up families find "shalom in the home". It's just weird enough to watch.
-----
I'd like to hear more about Julie. Does she like to write? Does she have a blog? Maybe some guest entries.
Ha. She hates writing and refuses to contribute. Trust me, I've asked.
I've been toying with the idea of doing a podcast, and if I do, I'll make her get involved.
-----
I would like to know if you're ever going to get a tuba. Also I would like to know what your favorite color is, if you have an accent, why the sky is blue, who makes you laugh, and is it faster to get the New York than by car.
I'd love a tuba, but man oh man, they're not cheap, even the used ones. My favorite color is yellow. I lost my Texas accent when I moved away in 1997 but I'm getting it back, I think. The sky is blue because if it was green, you wouldn't know when to stop mowing the grass. Schuyler makes me laugh; she's legitimately funny, like a grownup. If you're asking about professional comedians, I'd say people like David Cross, Jon Stewart and Ricky Gervais. The New York thing? I'm not quite sure what you're asking, so I'll say "No".
-----
Are you and Julie going to have more babies cause the one you have now is pretty stinkin' awesome and cute???? We need more cool people in the world!
She is pretty awesome, and entirely unique. And that's part of the problem.
Schuyler's monster is almost certainly genetic. It's not entirely clear what the chances are of it recurring -- Yale said one in four, while the University of Chicago thinks it might be as low as seven percent -- but the risk is there, and there are no guarantees that the next time around would bring the same level of severity.
Schuyler's CBPS is not nearly as bad as a lot of kids, most of whom have some level of physical impairment and mental retardation that Schuyler does not have. A lot of them die.
So yeah. If it were a risk of having another child who in the worst case scenario is just like Schuyler, I don't know, we might consider it. But the worst case scenario is pretty bad. No thanks.
-----
I want to know what happened with your eye and Buddy. What did Dr. Hottie say?
She said my eye is fine and that blood sugar fluctuations can cause flashes like that. She's also sending me to a team of ophthalmologists just to be sure. And she called me a young patient again. Oh yeah.
-----
Why don't we hear more about Schuyler using her big box of words? Is it too complicated for her to use or is she just not that interested yet?
You're kidding, right?
May 11, 2006
I want a new drug.
After three month of trying to control my blood sugar and weight with diet and exercise, I had my follow-up appointment with Dr. Hottie.
"So, how are you doing?" she asked.
"Well, I'm fat and my blood sugar's too high," I said. "Other than that, I'm swell."
It was true. My blood sugar is down, but not enough, and I actually gained a little weight, which she said was normal. So we moved on to the next step, and that next step is a drug called Glucophage.
It's not a bad one. I don't have to inject anything into my stomach or get bitten by a Gila Monster, for example. It's just a big pill that I take once a day. Glucophage works in three ways. It reduces the amount of glucose produced by the liver, it reduces the amount of glucose absorbed from food through the stomach, and it improves the processing of the body’s naturally produced insulin to reduce the amount of glucose in the blood stream.
It doesn't seem to have many side effects, apart from fucking with my digestive system a little bit. A small number of people can react to it by developing a condition called lactic acidosis, and that can be fatal in about half the people who get it, usually patients with kidney or liver problems. So that's no fun. But so far, I live and breathe.
My eyes are fine, too. You know, aside from their usual state of nearsightedness.
The other thing that Dr. Hottie did was put me on something called the Zone diet. Okay, I admit, that was the day before yesterday, and all I've done so far is buy some of these Zone Perfect bars for my desk drawer at work. Baby steps, you know.
I don't have much else to report, actually. The person who was bitching in my comments about the quality of my writing since I took on my diabetes blog will no doubt be even less thrilled that I am also now writing for a literary blog with my friend Rhys. Yeah, I know. Guess I'll have to start reading now.
This entry might actually be slightly lamer than most, but honestly, I don't have a lot to say today. I'll tell you what. You ask me whatever you want, and perhaps I'll answer your questions in future entries. I promise not to lie unless my true answers are too boring. So get ready to be bullshat.
"So, how are you doing?" she asked.
"Well, I'm fat and my blood sugar's too high," I said. "Other than that, I'm swell."
It was true. My blood sugar is down, but not enough, and I actually gained a little weight, which she said was normal. So we moved on to the next step, and that next step is a drug called Glucophage.
It's not a bad one. I don't have to inject anything into my stomach or get bitten by a Gila Monster, for example. It's just a big pill that I take once a day. Glucophage works in three ways. It reduces the amount of glucose produced by the liver, it reduces the amount of glucose absorbed from food through the stomach, and it improves the processing of the body’s naturally produced insulin to reduce the amount of glucose in the blood stream.
It doesn't seem to have many side effects, apart from fucking with my digestive system a little bit. A small number of people can react to it by developing a condition called lactic acidosis, and that can be fatal in about half the people who get it, usually patients with kidney or liver problems. So that's no fun. But so far, I live and breathe.
My eyes are fine, too. You know, aside from their usual state of nearsightedness.
The other thing that Dr. Hottie did was put me on something called the Zone diet. Okay, I admit, that was the day before yesterday, and all I've done so far is buy some of these Zone Perfect bars for my desk drawer at work. Baby steps, you know.
I don't have much else to report, actually. The person who was bitching in my comments about the quality of my writing since I took on my diabetes blog will no doubt be even less thrilled that I am also now writing for a literary blog with my friend Rhys. Yeah, I know. Guess I'll have to start reading now.
This entry might actually be slightly lamer than most, but honestly, I don't have a lot to say today. I'll tell you what. You ask me whatever you want, and perhaps I'll answer your questions in future entries. I promise not to lie unless my true answers are too boring. So get ready to be bullshat.
May 10, 2006
Living the lush life
I just received a letter from my insurance carrier (whom I won't name, but their initials are MetLife) detailing the recent dental work I had done. It included this interesting line:
Local anasthesia is not a covered expense.
It wasn't a big deal, since in the big scheme of things it wasn't a huge expense. But it made me think, just how tough do they expect you to be, that anasthesia during a root canal is considered a luxury item?
I feel like such a little prince all of a sudden.
Local anasthesia is not a covered expense.
It wasn't a big deal, since in the big scheme of things it wasn't a huge expense. But it made me think, just how tough do they expect you to be, that anasthesia during a root canal is considered a luxury item?
I feel like such a little prince all of a sudden.
Talking about the weather
Little did I know when I took this photo that this storm was going to kill people.
Considering how close this storm was, we didn't actually see any of it at our place. After I took this photo, we sat outside and watched these huge thunderheads move in, towering overhead and flashing with lightening but never actually reaching our place. The winds whipped our clothes and blew the ducks around the pond, but the storm itself moved just north of us. What was a beautiful and awesome display for us was a profoundly crappy experience for the three people who died and the ten who were hospitalized.
We didn't think much of it at the time, beyond "Cool, big clouds!", even when the tornado warning flashed across the screen. It wasn't until we turned on the television this morning that we saw the images of debris and house foundations and the inevitable "It sounded like a hundred freight trains!" interviews.
This time of year in north Texas, weather warnings scoot across the screen almost every night. You quickly determine whether or not your house is going to get sucked up or your car flattened by hail, and then you go back to your "What Not to Wear" or whatever. It doesn't necessarily occur to you that somewhere just up the road, someone else's home and life is getting ripped apart.
Makes you think.
Considering how close this storm was, we didn't actually see any of it at our place. After I took this photo, we sat outside and watched these huge thunderheads move in, towering overhead and flashing with lightening but never actually reaching our place. The winds whipped our clothes and blew the ducks around the pond, but the storm itself moved just north of us. What was a beautiful and awesome display for us was a profoundly crappy experience for the three people who died and the ten who were hospitalized.
We didn't think much of it at the time, beyond "Cool, big clouds!", even when the tornado warning flashed across the screen. It wasn't until we turned on the television this morning that we saw the images of debris and house foundations and the inevitable "It sounded like a hundred freight trains!" interviews.
This time of year in north Texas, weather warnings scoot across the screen almost every night. You quickly determine whether or not your house is going to get sucked up or your car flattened by hail, and then you go back to your "What Not to Wear" or whatever. It doesn't necessarily occur to you that somewhere just up the road, someone else's home and life is getting ripped apart.
Makes you think.
May 7, 2006
Hero worship
So, would you like to know how to make Schuyler's head explode?
Take her to see King Kong for real.
Take her to see King Kong for real.
May 6, 2006
I don't care if I never get back.
We took Schuyler to her first baseball game last night.
We sat in the cheap seats, ate lots of nasty ballpark food, got Schuyler her very own Texas Rangers ballcap (in purple, of course), and had a lot of fun. The Rangers lost by one run, but only after coming back from a seven run gap in a single inning. It was a good game and we had a great time, which we were all definitely due.
Most importantly, however, we took the opportunity to teach Schuyler a very important skill, one that she will be able to use anywhere in the world. It was a skill she took to instantly, too.
She learned to boo the Yankees.
We sat in the cheap seats, ate lots of nasty ballpark food, got Schuyler her very own Texas Rangers ballcap (in purple, of course), and had a lot of fun. The Rangers lost by one run, but only after coming back from a seven run gap in a single inning. It was a good game and we had a great time, which we were all definitely due.
Most importantly, however, we took the opportunity to teach Schuyler a very important skill, one that she will be able to use anywhere in the world. It was a skill she took to instantly, too.
She learned to boo the Yankees.
May 5, 2006
Buddy & Me
Years ago, I wrote that if I ever got a tumor, I'd call it Buddy and rename my journal "Buddy & Me".
Well, I think Buddy is here. And he's a ghost. In my eye.
In my right eye, to be precise. For about four hours today, I could see a little flickering ghostly blob, just off from the center of my field of vision. It was this shimmery little thing, metallic gold in color, and it just sort of hung out. It was very defined and present, and aside from being a little distracting while I drove, it didn't cause me any discomfort. It was like a tiny little "check engine" light going off, except of course it was warning me that my head was about to explode.
I have no idea what Buddy the Eyeball Ghost was, or if he'll be back. I don't know if he was a result of the Beedies, or some new fun way that my body is betraying me. I have an appointment with Dr, Hottie next week, so perhaps she'll be bale to shed some light on Buddy and his mission in my eyeball.
So there you go. All you armchair doctors can go nuts telling me what sort of hideous eyeball tumor I've got now. Just remember, his name is Buddy. Buddy the Eyeball Ghost.
Well, I think Buddy is here. And he's a ghost. In my eye.
In my right eye, to be precise. For about four hours today, I could see a little flickering ghostly blob, just off from the center of my field of vision. It was this shimmery little thing, metallic gold in color, and it just sort of hung out. It was very defined and present, and aside from being a little distracting while I drove, it didn't cause me any discomfort. It was like a tiny little "check engine" light going off, except of course it was warning me that my head was about to explode.
I have no idea what Buddy the Eyeball Ghost was, or if he'll be back. I don't know if he was a result of the Beedies, or some new fun way that my body is betraying me. I have an appointment with Dr, Hottie next week, so perhaps she'll be bale to shed some light on Buddy and his mission in my eyeball.
So there you go. All you armchair doctors can go nuts telling me what sort of hideous eyeball tumor I've got now. Just remember, his name is Buddy. Buddy the Eyeball Ghost.
May 4, 2006
Butthead
Over at Diabetes Notes, I'm joining the rest of the Science & Health blogs on b5media.com in talking about smoking issues today.
I'd like to pretend that I'm telling you this so you can go over and see what everyone has to say and maybe learn a little something to help you become a healthier person.
But really, I just wanted to use this graphic created by the CDC. It makes me stupid happy.
I'd like to pretend that I'm telling you this so you can go over and see what everyone has to say and maybe learn a little something to help you become a healthier person.
But really, I just wanted to use this graphic created by the CDC. It makes me stupid happy.
May 2, 2006
What I'm Listening to Tonight
Tables and Chairs by Andrew Bird
If we can call them friends we can call them on red telephones
and they won't pretend that they're too busy or they're not alone.
If we can call them friends we can call,
holler at 'em down these hallowed halls,
but we can't let the human factor fail to be a factor at all.
Don't, don't you worry
about the atmosphere
or any sudden pressure change.
'Cause I know
that it's starting
to get warm in here
and things are
starting to get strange.
And did you
did you see how
all our friends were there
drinkin' roses from the can?
How, how I wish I
I had talked to them
and wished they
fit into the plan.
And we were tired of being mild.
We were so tired of being mild.
And we were tired.
I know we're gonna meet someday in the crumbled financial institutions of this land.
There will be tables and chairs,
there'll be pony rides and dancing bears,
there'll even be a band.
'Cause listen after the fall there'll be no more countries
no currencies at all.
We're gonna live on our wits
gonna throw away survival kits
trade butterfly knives for adderal.
And that's not all.
Woah!
There will be snacks, there will
there will be snacks!
And we were tired of being mild.
We were so tired of being mild.
And we were so tired.
So don't you, don't you worry
about the atmosphere.
If we can call them friends we can call them on red telephones
and they won't pretend that they're too busy or they're not alone.
If we can call them friends we can call,
holler at 'em down these hallowed halls,
but we can't let the human factor fail to be a factor at all.
Don't, don't you worry
about the atmosphere
or any sudden pressure change.
'Cause I know
that it's starting
to get warm in here
and things are
starting to get strange.
And did you
did you see how
all our friends were there
drinkin' roses from the can?
How, how I wish I
I had talked to them
and wished they
fit into the plan.
And we were tired of being mild.
We were so tired of being mild.
And we were tired.
I know we're gonna meet someday in the crumbled financial institutions of this land.
There will be tables and chairs,
there'll be pony rides and dancing bears,
there'll even be a band.
'Cause listen after the fall there'll be no more countries
no currencies at all.
We're gonna live on our wits
gonna throw away survival kits
trade butterfly knives for adderal.
And that's not all.
Woah!
There will be snacks, there will
there will be snacks!
And we were tired of being mild.
We were so tired of being mild.
And we were so tired.
So don't you, don't you worry
about the atmosphere.
May 1, 2006
My rapidly expanding ego will soon eat your town.
And as if that last thing from Jen wasn't cool enough, check out this very nice entry by one of my favorite artists, Debbie Ohi. Look at that, it's me! I've been drawn by a few people in my lifetime (and I'm not just talking about on the bathroom wall in high school), but I think it's safe to say that this is my favorite.
Here's the part that makes me the happiest. Like Jen and her wonderful gift yesterday, Debbie didn't tell me she was doing this, or even that she'd done it. I was wandering through my flickr contacts and saw that she'd posted a new entry in her Little Nightmares series. I love this series; one day I am going to buy as many prints from it as I can. (This is my favorite so far.) As I was looking at it, I glanced at the little Previous Photo window.
"Hey, that's me!" thought me.
And then I followed the link and the rest is history. Or, you know, a blog entry, anyway.
Here's the part that makes me the happiest. Like Jen and her wonderful gift yesterday, Debbie didn't tell me she was doing this, or even that she'd done it. I was wandering through my flickr contacts and saw that she'd posted a new entry in her Little Nightmares series. I love this series; one day I am going to buy as many prints from it as I can. (This is my favorite so far.) As I was looking at it, I glanced at the little Previous Photo window.
"Hey, that's me!" thought me.
And then I followed the link and the rest is history. Or, you know, a blog entry, anyway.
April 30, 2006
Artsy Fartsy
Do you want to know why the internet is cool? Do you?
I got an amazing gift in the mail today, from my friend Jen. She had it drawn by her brother Tom Owens, an animator and storyboard artist at Dreamworks. I had no idea what she was up to until it arrived. I'm hanging it in my office tomorrow. I only regret that I don't have a scanner large enough to properly share it with you.
What an awesome way to start the week. Beats the crap out of last week.
I got an amazing gift in the mail today, from my friend Jen. She had it drawn by her brother Tom Owens, an animator and storyboard artist at Dreamworks. I had no idea what she was up to until it arrived. I'm hanging it in my office tomorrow. I only regret that I don't have a scanner large enough to properly share it with you.
What an awesome way to start the week. Beats the crap out of last week.
Sunday afternoon, and a question.
I took a break from a problematic video project today and spent the afternoon bike riding with Schuyler. We rode to lunch, had crappy fast food while listening to cheesy 80s music ("She blinded me with science!"), and explored the neighborhood for a few hours. It was the best time we've had a a long, long time.
The biggest change in Schuyler these days, as evidenced by my last entry, is her level of comprehension of the things we tell her and the world around her. We always knew it was there to some extent, but lately it's been possible to converse with her more than ever before.
While we were eating, she got very mellow and cuddled up next to me like she does sometimes. She gets weirdly focused and serious when she's like this, and it's then, with our faces close to each other, that we talk.
I don't know why I never asked her before.
"Do you ever wish you could talk?"
She looked at me for a moment. "Yeah," she said with only a touch of sadness. It's one of her handful of words she can speak fairly clearly. Well, clearly to us, anyway.
But then she thought about it and changed her mind. "No," she said, and smiled. She's got new teeth coming in, so her smile isn't as gummy as it's been lately.
"You don't want to talk?" I asked.
"Huh uh."
"Really?"
"Noooooooo," she said with a little smile and an eye roll, as if it was a silly question.
"You getting along okay like this?"
"Yeah!" she said with a laugh, and that was it. The serious talky window was closed and we were back to play time.
Which was perfectly fine with me. I liked the answer I got.
The biggest change in Schuyler these days, as evidenced by my last entry, is her level of comprehension of the things we tell her and the world around her. We always knew it was there to some extent, but lately it's been possible to converse with her more than ever before.
While we were eating, she got very mellow and cuddled up next to me like she does sometimes. She gets weirdly focused and serious when she's like this, and it's then, with our faces close to each other, that we talk.
I don't know why I never asked her before.
"Do you ever wish you could talk?"
She looked at me for a moment. "Yeah," she said with only a touch of sadness. It's one of her handful of words she can speak fairly clearly. Well, clearly to us, anyway.
But then she thought about it and changed her mind. "No," she said, and smiled. She's got new teeth coming in, so her smile isn't as gummy as it's been lately.
"You don't want to talk?" I asked.
"Huh uh."
"Really?"
"Noooooooo," she said with a little smile and an eye roll, as if it was a silly question.
"You getting along okay like this?"
"Yeah!" she said with a laugh, and that was it. The serious talky window was closed and we were back to play time.
Which was perfectly fine with me. I liked the answer I got.
Kelly
Two things of note this weekend, both of them accomplishments by the ladies of the house. Don't look at me like I'm going to do something equally cool. It's the weekend, man. If I even shave, it's a miracle. (And I didn't.)
First of all, congratulations are in order for Julie, who got a big promotion at The Monolith yesterday. Every time we move, she transfers with the company, which is one of the cool things about working for a big corporate monster like The Monolith, but she always ends up having to take a different position, depending on what's available. Well, as of today, she's back on the management team, in her old position as the store's Community Relations Manager. How weird is is that she and I are both doing the same thing in our respective places of employment? We are Ministers of Propaganda. Say what you will about this household, but it is definitely NOT a no-spin zone.
The other thing that happened yesterday involves Schuyler. I bought her a Cabbage Patch Doll, partly because she's been a very good little girl for quite some time without much in the way of reward and partly to distract her from the Mermaid Barbie that she had become fixated on in the store, despite its near-identical appearance to the Mermaid Barbie she already owned. Her sudden interest in a fat-headed, buck-toothed ugly doll seemed like a healthy improvement over her fixation on perfect, big-boobied Barbie.
She brought her Cabbage Patch Doll home, and I told her that she'd have to name it. This was a reach, and perhaps an unnecessary one since in addition to having the designer's name printed on their asses (no, really, I didn't believe it until Julie told me and had the doll moon me), Cabbage Patch Dolls come with names and birth certificates. Where's the fun in that? That would be like giving birth a baby and not being allowed to name it. (Not to mention someone's name tattooed on its ass.)
I had no idea what she would do, but I told her to get her device and tell me her doll's name. After she considered it for a few moments, she started deliberately typing on her Big Box of Words.
And that's how we learned that her new friend's name is Kelly.
Now here's the thing about that. Schuyler doesn't, to my knowledge, know anyone named Kelly, although she obviously heard the name somewhere. She certainly doesn't have any friends named Kelly. But she knew that was her doll's name, and more importantly, she knew how to spell it. She got it wrong at first, and then she figured out what she got wrong and fixed it.
What this means is that Schuyler understands the functions of letters well enough to work out how to spell a word that she wants to say. It also means that she grasps the basic rules of spelling, and therefore reading. AND, it means that she understands the relatively abstract concept of arbitrarily selecting a name for an inanimate object that represents a living being.
Which might not impress you if you've got your own little neurotypical wonderchild at home. But reading and spelling and abstractions are not easy for a nonverbal child. Stop for a moment and ask yourself how you would teach a mute child to read. Imagine that you could never get any kind of feedback, no repetitions of the things, no reading out loud to confirm that the things you are trying to teach are taking hold. You just read and provide tools like the BBoW and hope and pray for a sign that it's taking root inside a unique and broken brain whose workings have already baffled the world's leading expert on her monster.
So yeah. We're extremely proud of her. I am more convinced than ever that she's going to confound and exceed the world's expectations. I'm counting on her to write the rebuttal to my book one day.
First of all, congratulations are in order for Julie, who got a big promotion at The Monolith yesterday. Every time we move, she transfers with the company, which is one of the cool things about working for a big corporate monster like The Monolith, but she always ends up having to take a different position, depending on what's available. Well, as of today, she's back on the management team, in her old position as the store's Community Relations Manager. How weird is is that she and I are both doing the same thing in our respective places of employment? We are Ministers of Propaganda. Say what you will about this household, but it is definitely NOT a no-spin zone.
The other thing that happened yesterday involves Schuyler. I bought her a Cabbage Patch Doll, partly because she's been a very good little girl for quite some time without much in the way of reward and partly to distract her from the Mermaid Barbie that she had become fixated on in the store, despite its near-identical appearance to the Mermaid Barbie she already owned. Her sudden interest in a fat-headed, buck-toothed ugly doll seemed like a healthy improvement over her fixation on perfect, big-boobied Barbie.
She brought her Cabbage Patch Doll home, and I told her that she'd have to name it. This was a reach, and perhaps an unnecessary one since in addition to having the designer's name printed on their asses (no, really, I didn't believe it until Julie told me and had the doll moon me), Cabbage Patch Dolls come with names and birth certificates. Where's the fun in that? That would be like giving birth a baby and not being allowed to name it. (Not to mention someone's name tattooed on its ass.)
I had no idea what she would do, but I told her to get her device and tell me her doll's name. After she considered it for a few moments, she started deliberately typing on her Big Box of Words.
And that's how we learned that her new friend's name is Kelly.
Now here's the thing about that. Schuyler doesn't, to my knowledge, know anyone named Kelly, although she obviously heard the name somewhere. She certainly doesn't have any friends named Kelly. But she knew that was her doll's name, and more importantly, she knew how to spell it. She got it wrong at first, and then she figured out what she got wrong and fixed it.
What this means is that Schuyler understands the functions of letters well enough to work out how to spell a word that she wants to say. It also means that she grasps the basic rules of spelling, and therefore reading. AND, it means that she understands the relatively abstract concept of arbitrarily selecting a name for an inanimate object that represents a living being.
Which might not impress you if you've got your own little neurotypical wonderchild at home. But reading and spelling and abstractions are not easy for a nonverbal child. Stop for a moment and ask yourself how you would teach a mute child to read. Imagine that you could never get any kind of feedback, no repetitions of the things, no reading out loud to confirm that the things you are trying to teach are taking hold. You just read and provide tools like the BBoW and hope and pray for a sign that it's taking root inside a unique and broken brain whose workings have already baffled the world's leading expert on her monster.
So yeah. We're extremely proud of her. I am more convinced than ever that she's going to confound and exceed the world's expectations. I'm counting on her to write the rebuttal to my book one day.
April 26, 2006
Listen
"A sober friend once said to me, 'When I was still drinking, I was a sedated monster. After I got sober, I was just a monster.' He told me about his monster. His sounded just like mine without quite so much mascara. When people shine a little light on their monster, we find out how similar most of our monsters are. The secrecy, the obfuscation, the fact that these monsters can only be hinted at, gives us the sense that they must be very bad indeed. But when people let their monsters out for a little onstage interview, it turns out that we've all done or thought the same things, that this is our lot, our condition. We don't end up with a brand on our forehead. Instead, we compare notes."
--Anne Lamott, Bird by Bird
--Anne Lamott, Bird by Bird
April 25, 2006
A break in the trainwrecky goodness
Because I am every bit as sick of writing about my teeth as you are of reading about them, and because I don't particularly feel like taking on any of the other things currently making me crazy, I thought I'd share something positive that I'm looking forward to. I'm taking those lemons and making some lemonade, by golly. If I have any left over, perhaps I'll squish them in someone's eye.
Tomorrow after work, I'm going to try to go see a book signing by Anne Lamott.
I've always been a big fan of Anne Lamott. Her book on writing, Bird by Bird, had helped me immeasurably, and Operating Instructions, her account of the first year of raising her son by herself, went a long way towards convincing me that even fucked up, broken people can be good parents. I've been a little less enamored of her later work, as she has delved further and further into a Christian world into which I have a hard time following. Even then, however, she writes more about spirituality than religion, and so it's not so hard to digest. A lot of it actually speaks to me, as scary as that can be sometimes.
I don't know if you remember this or have been reading long enough to catch it the first time I wrote about it, but when I was looking for a literary agent, I knew I'd found the right one when she compared my writing to Anne Lamott's. I don't think for a moment that I'm nearly as good a writer, but I'd like to think that we're on the same path. Minus a lot of the Jesus, perhaps, but still.
So if you're a Dallas area stalker and would like to kill me, you should hide outside the Barnes & Noble at Lincoln Park in Dallas tomorrow night. I've got to warn you, though. The pain in my mouth and the bullshit in RobWorld is making me mean. You might have to sneak up on me.
Tomorrow after work, I'm going to try to go see a book signing by Anne Lamott.
I've always been a big fan of Anne Lamott. Her book on writing, Bird by Bird, had helped me immeasurably, and Operating Instructions, her account of the first year of raising her son by herself, went a long way towards convincing me that even fucked up, broken people can be good parents. I've been a little less enamored of her later work, as she has delved further and further into a Christian world into which I have a hard time following. Even then, however, she writes more about spirituality than religion, and so it's not so hard to digest. A lot of it actually speaks to me, as scary as that can be sometimes.
I don't know if you remember this or have been reading long enough to catch it the first time I wrote about it, but when I was looking for a literary agent, I knew I'd found the right one when she compared my writing to Anne Lamott's. I don't think for a moment that I'm nearly as good a writer, but I'd like to think that we're on the same path. Minus a lot of the Jesus, perhaps, but still.
So if you're a Dallas area stalker and would like to kill me, you should hide outside the Barnes & Noble at Lincoln Park in Dallas tomorrow night. I've got to warn you, though. The pain in my mouth and the bullshit in RobWorld is making me mean. You might have to sneak up on me.
After...
Holy fuck, that hurt.
Holy fuck, it hurts now.
Holy fuck, that cost a lot of money.
Holy fuck, he gave me Tylenol 3.
Holy fuck, it's not doing a thing.
You know, I try to be all cute about this, but right at this moment, I am in more pain than I think I have ever been in, ever. And he's not even done with it. He did a root canal on the NEW pain, since it was/is the worst, but he wasn't able to finish it because the tooth is apparently a "bad actor". And he could only do the one tooth, because of something having to do with infections that frankly I didn't hear a word of.
So it'll be another WEEK before this is done. And I have no idea how I'll pay for it, but honestly, that's not the bad part of this. I just can't imagine feeling like this until the end of the day, much less another week.
People keep saying it, and it's absolutely true. There is nothing in the world like bad dental pain. It makes it hard to think or talk or do anything at all.
That diabetic coma isn't sounding so bad right now.
-----
UPDATE, AN HOUR LATER:
Well, codeine might not be much of a pain killer, but it sure does improve your mood once it hits your system with both feet.
An hour ago I was in too much pain to drive home to North Dallas. Now? I might just be too stoned.
Whee!
Holy fuck, it hurts now.
Holy fuck, that cost a lot of money.
Holy fuck, he gave me Tylenol 3.
Holy fuck, it's not doing a thing.
You know, I try to be all cute about this, but right at this moment, I am in more pain than I think I have ever been in, ever. And he's not even done with it. He did a root canal on the NEW pain, since it was/is the worst, but he wasn't able to finish it because the tooth is apparently a "bad actor". And he could only do the one tooth, because of something having to do with infections that frankly I didn't hear a word of.
So it'll be another WEEK before this is done. And I have no idea how I'll pay for it, but honestly, that's not the bad part of this. I just can't imagine feeling like this until the end of the day, much less another week.
People keep saying it, and it's absolutely true. There is nothing in the world like bad dental pain. It makes it hard to think or talk or do anything at all.
That diabetic coma isn't sounding so bad right now.
-----
UPDATE, AN HOUR LATER:
Well, codeine might not be much of a pain killer, but it sure does improve your mood once it hits your system with both feet.
An hour ago I was in too much pain to drive home to North Dallas. Now? I might just be too stoned.
Whee!
Pain Merchants, here I come.
I got a speeding ticket this morning, on my way to work. Huh. I don't want to talk about that, though. I haven't even started processing that bullshit on a stick just yet.
I'm leaving in about thirty minutes for my dentist appointment. This is going to be FUN. In addition to the Bad Bad Tooth that will be getting its just desserts today, the troublesome tooth next to it started hurting this morning. Well, of course it did. So one of two things will happen at the dentist's office. Either he'll make another appointment to do the second tooth and stretch this thing out even longer, or he'll sit my ass down and subject me to TWO root canals in one sitting.
Either way, I'm pretty sure you're going to have a better afternoon than I am.
So I'm sitting here having my pre-dentist terrors, which started about half an hour ago, and while I know you, patient reader, are sick of reading about this, it's just about the only thing in my head today. It's funny how something as visceral as dental pain can drown out the other stuff. That's probably for the best.
I have some special powers, in case you never heard. I can identify the composer of a piece of music if I've ever heard that composer before, even if I've never heard that particular piece of music. I can tell if someone is a born-agan Christian the instant I meet them. And I can smell a lie, as surely as if a can of tuna had been opened.
Okay, enough of my cryptic blather. I'm going to the House of Pain now. See you on the other side. Fuck, I hate The Chair.
I'm leaving in about thirty minutes for my dentist appointment. This is going to be FUN. In addition to the Bad Bad Tooth that will be getting its just desserts today, the troublesome tooth next to it started hurting this morning. Well, of course it did. So one of two things will happen at the dentist's office. Either he'll make another appointment to do the second tooth and stretch this thing out even longer, or he'll sit my ass down and subject me to TWO root canals in one sitting.
Either way, I'm pretty sure you're going to have a better afternoon than I am.
So I'm sitting here having my pre-dentist terrors, which started about half an hour ago, and while I know you, patient reader, are sick of reading about this, it's just about the only thing in my head today. It's funny how something as visceral as dental pain can drown out the other stuff. That's probably for the best.
I have some special powers, in case you never heard. I can identify the composer of a piece of music if I've ever heard that composer before, even if I've never heard that particular piece of music. I can tell if someone is a born-agan Christian the instant I meet them. And I can smell a lie, as surely as if a can of tuna had been opened.
Okay, enough of my cryptic blather. I'm going to the House of Pain now. See you on the other side. Fuck, I hate The Chair.
April 24, 2006
Chopper Trouble continued
It was last Thursday, which now feels like a month ago, that I went to the dentist to end the bad bad bad bad bad bad pain in my mouth. He gave me antibiotics that were supposed to kill the infection and relieve the pain, with the help of basic over the counter pain killers, so that I could make it to my root canal appointment next Thursday.
It is now Monday, and the pain never got any better.
For four days, I have been dealing with this. ("Dealing" including being a giant grumpy pain in the ass, I'm sure.) I was out of town over the weekend, shooting a wedding, so even if my dentist was open over the weekend, it wouldn't have mattered. (I keep referring to him as "my dentist", as if he did anything for me other than scare the crap out of me with a big monster proposed bill and give me a prescription for amoxicillin, which I thought was an anthrax treatment. Well, I don't believe I have anthrax, so bully for me.)
Four days, and another three days to go? Fuck that. I called the office this morning and told them my sad tale.
"Have you been taking Ibuprofen with the antibiotic?" the nurse asked.
"Yep."
"Have you been taking double the recommended dosage? Dr. Pain Merchant thinks you might not be taking enough."
"Um, I've been taking a LOT more than it says to." I didn't tell her that I also took a bunch of Tylenol 3 with codeine that a friend gave me, which did no good at all. I might as well have been popping Skittles.
It was as if she read my mind. "Well, he doesn't want to give you Tylenol 3 with codeine, since that will just mask the pain."
(Which it doesn't. I could hear my tooth laughing at the Tylenol 3. A tiny little muffled chortle in my mouth.)
In the end, they bumped some people and got me an appointment for tomorrow. (That should make me feel bad except, you know, fuck 'em. I have needs.) One more sleepless night and then blessed relief.
Anyone who knows my past history in the Chair and is watching me now get excited about getting a root canal must think they've wandered into BizarroBlogWorld.
I hope they'll take a check.
It is now Monday, and the pain never got any better.
For four days, I have been dealing with this. ("Dealing" including being a giant grumpy pain in the ass, I'm sure.) I was out of town over the weekend, shooting a wedding, so even if my dentist was open over the weekend, it wouldn't have mattered. (I keep referring to him as "my dentist", as if he did anything for me other than scare the crap out of me with a big monster proposed bill and give me a prescription for amoxicillin, which I thought was an anthrax treatment. Well, I don't believe I have anthrax, so bully for me.)
Four days, and another three days to go? Fuck that. I called the office this morning and told them my sad tale.
"Have you been taking Ibuprofen with the antibiotic?" the nurse asked.
"Yep."
"Have you been taking double the recommended dosage? Dr. Pain Merchant thinks you might not be taking enough."
"Um, I've been taking a LOT more than it says to." I didn't tell her that I also took a bunch of Tylenol 3 with codeine that a friend gave me, which did no good at all. I might as well have been popping Skittles.
It was as if she read my mind. "Well, he doesn't want to give you Tylenol 3 with codeine, since that will just mask the pain."
(Which it doesn't. I could hear my tooth laughing at the Tylenol 3. A tiny little muffled chortle in my mouth.)
In the end, they bumped some people and got me an appointment for tomorrow. (That should make me feel bad except, you know, fuck 'em. I have needs.) One more sleepless night and then blessed relief.
Anyone who knows my past history in the Chair and is watching me now get excited about getting a root canal must think they've wandered into BizarroBlogWorld.
I hope they'll take a check.
April 22, 2006
Been better, been worse.
Well, it's been a mixed bag of a week. On one hand, people have been slightly more hateful than usual, Schuyler is sick and coughing like a chain smoker, and of course my mouth feels like I've been snacking on glass.
On the other hand, work is going really well, and my pro-blogging career kicked off nicely, by golly. Best of all, I talked to my agent tonight.
And yeah, I still feel like a bit of an asshole when I say that. What are you going to do?
The bad news is that two editors who were very interested in my book changed publishers and are no longer able to publish memoirs. (Imagine, they'd rather change jobs than turn down my agent. I told you she was good.) The good news? Two more editors are looking as we speak, and she's fairly confident that she'll have even better news soon.
I'd be more anxious about it if I actually had a finished book.
We discussed my diabetes diagnosis and whether it should change the direction of my book, and we agreed that it would just be a distraction. Schuyler's monster is both unique and poignant, she said. Diabetes is common and boring.
"No one wants to read about your diabetes, Robert," she said.
Heh. Like I didn't know that already.
On the other hand, work is going really well, and my pro-blogging career kicked off nicely, by golly. Best of all, I talked to my agent tonight.
And yeah, I still feel like a bit of an asshole when I say that. What are you going to do?
The bad news is that two editors who were very interested in my book changed publishers and are no longer able to publish memoirs. (Imagine, they'd rather change jobs than turn down my agent. I told you she was good.) The good news? Two more editors are looking as we speak, and she's fairly confident that she'll have even better news soon.
I'd be more anxious about it if I actually had a finished book.
We discussed my diabetes diagnosis and whether it should change the direction of my book, and we agreed that it would just be a distraction. Schuyler's monster is both unique and poignant, she said. Diabetes is common and boring.
"No one wants to read about your diabetes, Robert," she said.
Heh. Like I didn't know that already.
April 21, 2006
And... we're live.
Just a quick note to let everyone know that I am now officially The Man over at Diabetes Notes.
I want to take this opportunity to publicly thank Hsien-Hsien Lei and Rhys Alexander, the two people most responsible for gettting me on board over at b5media. Go check out their work, too. Good good stuff.
So that's all I had this morning. Please stop by and see me sometime. I think this is going to be fun. Hsien didn't even blink when I asked if I could use "Smart living with a dumb pancreas" as the blog's tagline. That's a good sign.
I'll shut up now, because as a wise man once said, "Nobody likes a kissass."
I want to take this opportunity to publicly thank Hsien-Hsien Lei and Rhys Alexander, the two people most responsible for gettting me on board over at b5media. Go check out their work, too. Good good stuff.
So that's all I had this morning. Please stop by and see me sometime. I think this is going to be fun. Hsien didn't even blink when I asked if I could use "Smart living with a dumb pancreas" as the blog's tagline. That's a good sign.
I'll shut up now, because as a wise man once said, "Nobody likes a kissass."
April 20, 2006
Chopper Trouble
A couple of days ago, I got a toothache.
Now, when I say I got a toothache, I don't want you to imagine me suddenly putting my hand to my cheek and saying "Goodness, that smarts!" Think more of me running to the bathroom mirror and looking in my mouth for the wasp that had clearly snuck into my mouth and was stinging my gum.
After determining that ignoring it was not in fact going to make the pain go away, I went to the dentist today. As some of you know, I hate hate HATE going to the dentist, which is funny since I've had to spend so many delightful hours in the chair. I'm told that I got all my childhood diseases at roughly the same time, at the age of four or five, and I got them bad. I had chicken pox on the bottoms of my feet and inside my mouth, for example. As a result, I was told by my childhood dentist, my permanent teeth developed into little 90 pound weaklings at the beach, constantly having sand kicked in their little teeth faces.
After sitting through a meeting with my boss this morning and smiling happily while resisting the urge to cry, swear or throw myself out the window from the pain, I called 1-800-DENTIST, told them my insurance carrier and where my office was, and they found someone who would take me right then, just run out to the car and go go go.
So I went went went. And like every other time I've gone to the dentist, the news was much worse than I thought it would be.
I was confused because the tooth that was hurting was a crown, and I figured it must have had a root canal at some point. But no, it was a crown on a tooth with a functioning nerve, and thanks to a poorly attached crown when it was originally done, there was decay and infection underneath. To make matters worse, it had spread to the two teeth on either side, one of which DID have a root canal and a crown but would now need a new crown.
So the total required work to Rob's Mouth of Horrors: TWO root canals and THREE crowns. The total cost will be about five grand, and my insurance stops paying after a thousand.
I wish I had a cute, pithy ending to this, but my mouth still hurts. My wallet's feeling sort of woozy too, now that you mention it.
Now, when I say I got a toothache, I don't want you to imagine me suddenly putting my hand to my cheek and saying "Goodness, that smarts!" Think more of me running to the bathroom mirror and looking in my mouth for the wasp that had clearly snuck into my mouth and was stinging my gum.
After determining that ignoring it was not in fact going to make the pain go away, I went to the dentist today. As some of you know, I hate hate HATE going to the dentist, which is funny since I've had to spend so many delightful hours in the chair. I'm told that I got all my childhood diseases at roughly the same time, at the age of four or five, and I got them bad. I had chicken pox on the bottoms of my feet and inside my mouth, for example. As a result, I was told by my childhood dentist, my permanent teeth developed into little 90 pound weaklings at the beach, constantly having sand kicked in their little teeth faces.
After sitting through a meeting with my boss this morning and smiling happily while resisting the urge to cry, swear or throw myself out the window from the pain, I called 1-800-DENTIST, told them my insurance carrier and where my office was, and they found someone who would take me right then, just run out to the car and go go go.
So I went went went. And like every other time I've gone to the dentist, the news was much worse than I thought it would be.
I was confused because the tooth that was hurting was a crown, and I figured it must have had a root canal at some point. But no, it was a crown on a tooth with a functioning nerve, and thanks to a poorly attached crown when it was originally done, there was decay and infection underneath. To make matters worse, it had spread to the two teeth on either side, one of which DID have a root canal and a crown but would now need a new crown.
So the total required work to Rob's Mouth of Horrors: TWO root canals and THREE crowns. The total cost will be about five grand, and my insurance stops paying after a thousand.
I wish I had a cute, pithy ending to this, but my mouth still hurts. My wallet's feeling sort of woozy too, now that you mention it.
April 17, 2006
Mister Fancy Pants Pro Blogger
Well, it's been announced on another site now, so I can tell you the thing I was being all vague about the other day. Beginning in May, I will become the host of Diabetes Notes, a diabetes blog (well, yeah, you think?) on b5media, "a blogging network by bloggers from around the world covering the subjects they are most passionate about". Well, there you go. I think I'm pretty passionate about diabetes, even if my passion is in exclaiming "Lo, the Beedies, they doth suck my ass."
The folks at b5media have been very cool and seem excited about having me on board. I'm excited, too, even though at this point, my experience with diabetes is more akin to a cautionary tale than an expert opinion. Well, perhaps that's the draw. I think I've accepted the possibility of becoming a trainwreck, particularly if I'm getting paid. Perhaps I'll have a weekly feature called "Don't Eat This!"
So watch for my debut in May. I can't wait to talk about the gila monster drool again.
The folks at b5media have been very cool and seem excited about having me on board. I'm excited, too, even though at this point, my experience with diabetes is more akin to a cautionary tale than an expert opinion. Well, perhaps that's the draw. I think I've accepted the possibility of becoming a trainwreck, particularly if I'm getting paid. Perhaps I'll have a weekly feature called "Don't Eat This!"
So watch for my debut in May. I can't wait to talk about the gila monster drool again.
April 16, 2006
I'm too sexy for my shoes
Well, almost two weeks after the fact (and a week after all my shoes were sold and shipped off), I got a response from eBay about my naughty shoe listing. I thought it was funny at the time because it seemed pretty obvious that in explaining why they delisted a couple of shoes from my auction, they accidentally sent the "Materials adult in nature or otherwise not appropriate for minors (individuals under 18 years of age) may only be listed in eBay's Mature Audiences area" response instead of "Your shoes are too nasty to sell to other humans".
Turns out that no, they got it right.
So really, according to the rules, NONE of my shoes should have been fair game. I managed to slip most of my fetish items past The Man and into the hands of sleazy shoe-fuckers. I made a little money, too. Add pornographer to my list of accomplishments.
Incidentally, if you did buy a pair of my shoes and are currently in a relationship with them, you really are encouraged to keep that information to yourself. I'm just here to bring you together. After that, it's all you.
Turns out that no, they got it right.
Hello,
Thank you for writing to eBay with your concerns. I am happy to help.
I understand your frustration at having your items ended, however, I carefully reviewed your account, the auctions in question and current eBay policy regarding Used Clothing/Mature Audiences and determined that the correct action was taken.
Since there are sellers who list shoes as fetish items, eBay has adopted strict guidelines for the listing of used shoes.
The following are some examples of what is considered inappropriate in listings on the general site:
* Marketing the person who wore the clothing, rather than the clothing item itself. ("TYLER'S used/worn shoes", "MY used socks", "JOCK WORN/USED", "FRAT BOY WORN/USED", "I have worn this shirt daily as I work out", etc.).
* Any reference to odor or stains.
* No reference to "fetish", "special request" or other sexual innuendo is allowed.
* Indicating the item has not been or will not be properly cleaned (any reference to odor, shipping in a zip lock bag, etc.).
* Images showing the sellers face, whole body or that are sexually suggestive or otherwise inappropriate. In listings for used shoes or socks, the image cannot show above the knee, and the foot must be totally inside of the item being sold (no bare foot in a sock auction; no foot outside shoe even partially, in a shoe auction, etc.).
Any extraneous information such as "Then, about a year ago, my feet started hurting. For some reason, I suddenly couldn't wear my Chuck Taylors or my Vans, forced instead to retreat into the comfort of my big leather Airwalks instead. A few weeks ago, I found out that I have diabetes and will never again be able to wear my hip and happenin' shoes from before. Sad story, I know. Every time I walk into my closet, my old shoes are there, mocking me. It's time to get rid of them and move on with my new life, one with trips to the salad bar and fake foods and no alcohol (no, really), and most of all, with ugly new shoes for my big sad diabetic feet. But don't weep for me, gentle buyer friend with unusually large feet, because my fun happy shoes are going to walk again, perhaps on YOUR big dogs."
It has been my pleasure to assist you. Thank you for choosing eBay and have a great day.
Regards,
Ralston
Community Watch Team
eBay Trust & Safety
So really, according to the rules, NONE of my shoes should have been fair game. I managed to slip most of my fetish items past The Man and into the hands of sleazy shoe-fuckers. I made a little money, too. Add pornographer to my list of accomplishments.
Incidentally, if you did buy a pair of my shoes and are currently in a relationship with them, you really are encouraged to keep that information to yourself. I'm just here to bring you together. After that, it's all you.
Thank you, Easter Bunny! Bock bock!
Well, it's Easter, a holiday that falls on a Sunday, so you're even less likely to be reading this than usual. In fact, I'll bet no one's reading this but me. I am all alone. I could take off my pants and you wouldn't even know it. Ahhh. Much more comfortable.
Not being Christians, Easter isn't a big day for us. It's funny how many people ask us if we celebrate Easter anyway. You know, for Schuyler. And I suppose it's a fair question, since we celebrate Christmas, or at least the holiday season. (Now that I'm not in retail, it's going to be harder to wage the War on Christmas with my insidious "Happy holidays" greeting.)
I guess the big difference is that Christmas celebrates hope and peace and harmony and good stuff that even us heathens can get behind. Easter's harder to explain. "Yeah, we killed Jesus, but he didn't hold it against us, and then he turned into a zombie, the Greatest Zombie of All, and so we play with rabbits and chickens and eat chocolate eggs. Any questions?"
I suppose we could make it about the beginning of spring, but in Texas, that happens in February. Springtime in Texas means that the hot steering wheel starts to make you cry again.
So yeah, it's complicated being an agnostic at Easter, but that doesn't mean the rest of you can't have a fun day. Julie works today, so I'll spend the day with Schuyler, probably playing with the baby ducks outside (a very Easterly behavior) or watching King Kong again, which is only like Easter in that we've watched it like seventy times since we got it, so it's sort of like he keeps getting resurrected.
Anyway, whether you are celebrating the beginning of spring or the day when Christ rolled back the stone, stepped out and saw his shadow (Damn, another six weeks of winter!), I hope you have a nice day today. It's the one day of the year you can probably wear pastels without getting your ass kicked and your lunch money stolen, although really, why take that chance?
(Note: If you were offended by this entry, I really do apologize. I'm just having a little fun. If it makes you feel better, imagine me in the Lake of Fire, drinking Diet Coke and listening to conservative talk radio for all eternity. Welcome to Hell, here's your accordion...)
Not being Christians, Easter isn't a big day for us. It's funny how many people ask us if we celebrate Easter anyway. You know, for Schuyler. And I suppose it's a fair question, since we celebrate Christmas, or at least the holiday season. (Now that I'm not in retail, it's going to be harder to wage the War on Christmas with my insidious "Happy holidays" greeting.)
I guess the big difference is that Christmas celebrates hope and peace and harmony and good stuff that even us heathens can get behind. Easter's harder to explain. "Yeah, we killed Jesus, but he didn't hold it against us, and then he turned into a zombie, the Greatest Zombie of All, and so we play with rabbits and chickens and eat chocolate eggs. Any questions?"
I suppose we could make it about the beginning of spring, but in Texas, that happens in February. Springtime in Texas means that the hot steering wheel starts to make you cry again.
So yeah, it's complicated being an agnostic at Easter, but that doesn't mean the rest of you can't have a fun day. Julie works today, so I'll spend the day with Schuyler, probably playing with the baby ducks outside (a very Easterly behavior) or watching King Kong again, which is only like Easter in that we've watched it like seventy times since we got it, so it's sort of like he keeps getting resurrected.
Anyway, whether you are celebrating the beginning of spring or the day when Christ rolled back the stone, stepped out and saw his shadow (Damn, another six weeks of winter!), I hope you have a nice day today. It's the one day of the year you can probably wear pastels without getting your ass kicked and your lunch money stolen, although really, why take that chance?
(Note: If you were offended by this entry, I really do apologize. I'm just having a little fun. If it makes you feel better, imagine me in the Lake of Fire, drinking Diet Coke and listening to conservative talk radio for all eternity. Welcome to Hell, here's your accordion...)
April 14, 2006
Talking about stuff
I got interviewed!
The site is a diabetic blog, and so most of the questions were about my own experiences with the Beedies. I've done some interviews in the past where the questions made me cringe, but this time around I really liked them, and I tried to answer them as honestly as I could. I don't think I came across as particularly knowledgeable, which of course is sadly accurate, but at the very least I hope I seemed like a nice enough guy who might just get his diabetic crap together before someone has to saw off his feet. In any case, I was very pleased with how it turned out, and it might just lead to some more cool stuff. I'm being vague about that last bit because I know it pisses you off.
It's been a weird few days for me. Yesterday I had an outright bad day. I keep reading that it's bad for diabetics to skip meals, and yesterday I discovered that yes, it is in fact not a good idea for diabetics, or at least this diabetic, to go all day without eating. About the time I left work for the long drive home, my energy dropped dramatically, my feet started to feel like someone was stabbing them with knives, and I got dizzy. As soon as I walked in the door, I fell on the bed and passed out for about half an hour.
Julie found me and (with some effort) woke me up, and I groggily took my blood sugar, expecting it to be badly elevated. Weirdly, though, it was unusually low, almost where it was supposed to me. I had dinner and almost instantly felt much better. I have no idea what happened, although I am pretty sure it was high and then dropped like crazy for some reason. What reason? Who the hell knows? Not me.
So yeah, my body has become a mysterious and hostile organism. Today I didn't mess around. I had breakfast, lunch and dinner, and I got some exercise with Schuyler, who was home from school thanks to the kickoff of Zombie Jesus Weekend. I bought her a little pink soccer ball for three bucks, and it was worth every one of those three hundred pennies. I feel normal tonight, healthy even.
So there's one more bit of advice that didn't make it into the interview. Eat some damn food.
The site is a diabetic blog, and so most of the questions were about my own experiences with the Beedies. I've done some interviews in the past where the questions made me cringe, but this time around I really liked them, and I tried to answer them as honestly as I could. I don't think I came across as particularly knowledgeable, which of course is sadly accurate, but at the very least I hope I seemed like a nice enough guy who might just get his diabetic crap together before someone has to saw off his feet. In any case, I was very pleased with how it turned out, and it might just lead to some more cool stuff. I'm being vague about that last bit because I know it pisses you off.
It's been a weird few days for me. Yesterday I had an outright bad day. I keep reading that it's bad for diabetics to skip meals, and yesterday I discovered that yes, it is in fact not a good idea for diabetics, or at least this diabetic, to go all day without eating. About the time I left work for the long drive home, my energy dropped dramatically, my feet started to feel like someone was stabbing them with knives, and I got dizzy. As soon as I walked in the door, I fell on the bed and passed out for about half an hour.
Julie found me and (with some effort) woke me up, and I groggily took my blood sugar, expecting it to be badly elevated. Weirdly, though, it was unusually low, almost where it was supposed to me. I had dinner and almost instantly felt much better. I have no idea what happened, although I am pretty sure it was high and then dropped like crazy for some reason. What reason? Who the hell knows? Not me.
So yeah, my body has become a mysterious and hostile organism. Today I didn't mess around. I had breakfast, lunch and dinner, and I got some exercise with Schuyler, who was home from school thanks to the kickoff of Zombie Jesus Weekend. I bought her a little pink soccer ball for three bucks, and it was worth every one of those three hundred pennies. I feel normal tonight, healthy even.
So there's one more bit of advice that didn't make it into the interview. Eat some damn food.
April 11, 2006
Welcome to America
There's been so much in the news lately about the proposed immigration legislation being debated in Washington, especially a House bill approved in December that would have made it a felony both to be in the country illegally and even to provide charitable assistance to illegal immigrants. There's been a lot of talk about enforcing the laws we have and making sure the immigrants follow the rules we have in place, and it reminded me of a case in which our laws were successfully enforced and the system worked.
The case in point involved a large group of immigrants who were trying to get into this country despite the fact that most of them didn't speak English and they had no jobs or families waiting for them. Most of them had applied for visas to enter the country, but they chose not to wait before starting their journey to the United States.
After a protracted legal battle, however, the State Department told these immigrant wannabes that they had to "await their turns on the waiting list and then qualify for and obtain immigration visas before they may be admissible into the United States." They were sent back to their point of origin to await the legal process in order to become American citizens according to the rules.
So it was that after getting so close to their American goal that they could see the lights of Miami from the deck of the German transatlantic liner St. Louis, over nine hundred Jewish refugees from Germany and eastern Europe were returned to Europe in 1939 after attempting to enter the United States by way of Cuba after fleeing the Third Reich.
Despite appeals by the American Jewish Joint Distribution Committee, President Roosevelt chose not to issue an executive order admitting the refugees, and the 1924 Immigration Act was enforced. The passengers eventually made their way to Belgium and were relocated to refugee centers in various European countries, many of which eventually fell under German occupation. A number of the passengers of the St. Louis were eventually granted their American visas; many of them had already disappeared into the camps by that time.
Look, I'm not telling you what to believe about the current immigration debate. I'm not entirely sure how I feel about it myself, to be perfectly honest. And I'm not saying that the situations faced by European Jews in the 1930s is even remotely the same as that faced by Central American and Asian immigrants today. It's not the same at all, although extreme Third World poverty is certainly its own kind of tyranny.
My point is simply that if we approach this issue simply as one of law and protection of some perceived notion of American status quo, we ignore the human factor. We miss the whole reason that so many people risk so much to try to make a future in this country. In missing that, we miss what it really means to be an American. And unless we live on a reservation, our ancestors probably wouldn't be too thrilled with us for that.
The case in point involved a large group of immigrants who were trying to get into this country despite the fact that most of them didn't speak English and they had no jobs or families waiting for them. Most of them had applied for visas to enter the country, but they chose not to wait before starting their journey to the United States.
After a protracted legal battle, however, the State Department told these immigrant wannabes that they had to "await their turns on the waiting list and then qualify for and obtain immigration visas before they may be admissible into the United States." They were sent back to their point of origin to await the legal process in order to become American citizens according to the rules.
So it was that after getting so close to their American goal that they could see the lights of Miami from the deck of the German transatlantic liner St. Louis, over nine hundred Jewish refugees from Germany and eastern Europe were returned to Europe in 1939 after attempting to enter the United States by way of Cuba after fleeing the Third Reich.
Despite appeals by the American Jewish Joint Distribution Committee, President Roosevelt chose not to issue an executive order admitting the refugees, and the 1924 Immigration Act was enforced. The passengers eventually made their way to Belgium and were relocated to refugee centers in various European countries, many of which eventually fell under German occupation. A number of the passengers of the St. Louis were eventually granted their American visas; many of them had already disappeared into the camps by that time.
Look, I'm not telling you what to believe about the current immigration debate. I'm not entirely sure how I feel about it myself, to be perfectly honest. And I'm not saying that the situations faced by European Jews in the 1930s is even remotely the same as that faced by Central American and Asian immigrants today. It's not the same at all, although extreme Third World poverty is certainly its own kind of tyranny.
My point is simply that if we approach this issue simply as one of law and protection of some perceived notion of American status quo, we ignore the human factor. We miss the whole reason that so many people risk so much to try to make a future in this country. In missing that, we miss what it really means to be an American. And unless we live on a reservation, our ancestors probably wouldn't be too thrilled with us for that.
April 9, 2006
A Different Kind of Normal
I forget who it was now (sorry!), but a few months ago someone pointed me to a new parenting magazine called Wondertime that contained a series of stories about a special needs family and how they cope with a variety of issues. I decide to give it a try, and the first issue finally arrived. Turns out the magazine only comes out a few times a year, so the issue I got was actually the premier issue.
The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.
I am particularly interested in this series because in the next installment, Meryman will explore Jimmy's quest to find his own voice, through speech therapy and an augmentative alternative communication device, possibly one like Schuyler's Big Box of Words.
The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.
The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child.
The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.
Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.
Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."
That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."
The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.
I am particularly interested in this series because in the next installment, Meryman will explore Jimmy's quest to find his own voice, through speech therapy and an augmentative alternative communication device, possibly one like Schuyler's Big Box of Words.
The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.
The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child.
The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.
Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.
Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."
That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."
Red
Schuyler wanted red hair.
Schuyler got red hair. Holy crap.
This week we received a letter from her school, informing us that there is a proposal to go to school uniforms next year. The letter included a ballot for every household to vote and return to the school. Our problem is that we are not in agreement on the issue. Julie thinks it's a good idea; I am completely unconvinced.
Any thoughts?
Schuyler got red hair. Holy crap.
This week we received a letter from her school, informing us that there is a proposal to go to school uniforms next year. The letter included a ballot for every household to vote and return to the school. Our problem is that we are not in agreement on the issue. Julie thinks it's a good idea; I am completely unconvinced.
Any thoughts?
April 6, 2006
Something to think about
I was reading an article in Child Magazine this morning that I thought was interesting. According to the article, there is new evidence to suggest that spanking your kids does more harm than good, regardless of the culture in which you live.
Researchers at the Center for Child and Family Policy at Duke University studied 366 mothers and children in China, India, Italy, Kenya, the Philippines and Thailand. They found that even in those countries where spanking is the cultural norm, the kids who are often physically disciplined are more likely to be anxious and aggressive than those who received either less physical punishment or none at all.
"Children imitate their parents," says lead study author Jennifer Lansford, Ph.D. "If their parent uses hitting to deal with a situation, children think it's okay for them to do it, too."
Paradoxically, this effect may be even more pronounced in places like the United States where spanking is no longer considered to be part of the cultural norm of parenting. "If a child knows most of her friends are spanked, it may feel less strange or frightening," says Dr. Lansford. "But if it isn't the norm, she may feel rejected by her parents or imagine she's a bad kid."
Researchers at the Center for Child and Family Policy at Duke University studied 366 mothers and children in China, India, Italy, Kenya, the Philippines and Thailand. They found that even in those countries where spanking is the cultural norm, the kids who are often physically disciplined are more likely to be anxious and aggressive than those who received either less physical punishment or none at all.
"Children imitate their parents," says lead study author Jennifer Lansford, Ph.D. "If their parent uses hitting to deal with a situation, children think it's okay for them to do it, too."
Paradoxically, this effect may be even more pronounced in places like the United States where spanking is no longer considered to be part of the cultural norm of parenting. "If a child knows most of her friends are spanked, it may feel less strange or frightening," says Dr. Lansford. "But if it isn't the norm, she may feel rejected by her parents or imagine she's a bad kid."
April 4, 2006
Parade
I'm sitting in McDonald's Playland here in charming North Dallas, Texas. (Not entirely sure which one, either. I live in a world of interchangeable North Dallas suburbs.) I'm watching Schuyler play, and interact with the other kids, and it's fascinating.
She starts off trying to play with three little pretty princesses, all of them carrying orange-haired little dolls from their Happy Meals. Schuyler's possession of an idential doll does not seem to be granting her entrance into their circle, however, and for a good ten minutes I watch her chase them around as they intentionally shun her, turning their backs on her and running away when she tries to talk to them. I can't make out the words they're saying to her, but the tone is unmistakably unkind.
Schuyler's a little doll herself, you know, and she either doesn't realize they are blowing her off, or she just doesn't give a shit.
She takes it in stride, I do not. It's hard, watching little girls be little girls to each other, which often means being horrible little shits. (For the adult version, go visit any Attached Parenting discussion forum.) I want to interfere, I want to say mean things to these little girls and make them run off crying, just for shunning the Chubbin. I don't. I sit here and I watch.
And when I sit and watch long enough, I see the thing that often happens with Schuyler. I see her shrug it off and play with other kids, and I see her begin to attract a little following, the kids who see that she's different but don't yet know enough to treat her like a freak. They'll learn one day, I'm afraid, but not just yet. I see the Schuyler Pied Piper Effect kick in, and before long I'm watching the little mob that inevitably ends up following her, like she's the strange mute drum major in the Weird Kids Parade.
Then it happens. The snotty little princesses that treated her like a leper half an hour ago want to play with her now. She has popularity, and they want some of it.
And to her inexhaustible credit, Schuyler lets them, without hesitation. I am a tiny bit frustrated that they are getting away with it, but I am mostly proud of her for being a bigger person than any of us.
Earlier, we were at the drugstore and she repeated a refrain that's been going for about a week now. Although this photo makes it look otherwise, Schuyler's hair color has faded, as it was supposed to (although, and this is important, not completely), and she wants it redone, this time in red.
"I want red hair." She's been saying it for about a week now.
We went to the aisle where we picked up the last hair color experiment (L'Oreal Color Pulse Concentrated Non-Permanent Color Mousse, for those of you who care, and I assume that's everyone), and she immediately grabbed the one she's been looking at every time we go in. This time it's "Red Pulse", and by golly, it's RED. Nothing subtle here.
So fine, no problem. No ammonia, no peroxide, washes out in eight to ten shampoos (except that it totally doesn't), safe for your hair and loads of fun. There's just one problem this time. She made a special request at a father/daughter bonding exercise.
"Red hair Daddy."
I'm not accustomed to denying Schuyler her requests, particularly the ones she makes on her device. But, um, this might have to be the first.
Well, okay. Maybe just a hint of red. Maybe. She did ask nicely.
She starts off trying to play with three little pretty princesses, all of them carrying orange-haired little dolls from their Happy Meals. Schuyler's possession of an idential doll does not seem to be granting her entrance into their circle, however, and for a good ten minutes I watch her chase them around as they intentionally shun her, turning their backs on her and running away when she tries to talk to them. I can't make out the words they're saying to her, but the tone is unmistakably unkind.
Schuyler's a little doll herself, you know, and she either doesn't realize they are blowing her off, or she just doesn't give a shit.
She takes it in stride, I do not. It's hard, watching little girls be little girls to each other, which often means being horrible little shits. (For the adult version, go visit any Attached Parenting discussion forum.) I want to interfere, I want to say mean things to these little girls and make them run off crying, just for shunning the Chubbin. I don't. I sit here and I watch.
And when I sit and watch long enough, I see the thing that often happens with Schuyler. I see her shrug it off and play with other kids, and I see her begin to attract a little following, the kids who see that she's different but don't yet know enough to treat her like a freak. They'll learn one day, I'm afraid, but not just yet. I see the Schuyler Pied Piper Effect kick in, and before long I'm watching the little mob that inevitably ends up following her, like she's the strange mute drum major in the Weird Kids Parade.
Then it happens. The snotty little princesses that treated her like a leper half an hour ago want to play with her now. She has popularity, and they want some of it.
And to her inexhaustible credit, Schuyler lets them, without hesitation. I am a tiny bit frustrated that they are getting away with it, but I am mostly proud of her for being a bigger person than any of us.
Earlier, we were at the drugstore and she repeated a refrain that's been going for about a week now. Although this photo makes it look otherwise, Schuyler's hair color has faded, as it was supposed to (although, and this is important, not completely), and she wants it redone, this time in red.
"I want red hair." She's been saying it for about a week now.
We went to the aisle where we picked up the last hair color experiment (L'Oreal Color Pulse Concentrated Non-Permanent Color Mousse, for those of you who care, and I assume that's everyone), and she immediately grabbed the one she's been looking at every time we go in. This time it's "Red Pulse", and by golly, it's RED. Nothing subtle here.
So fine, no problem. No ammonia, no peroxide, washes out in eight to ten shampoos (except that it totally doesn't), safe for your hair and loads of fun. There's just one problem this time. She made a special request at a father/daughter bonding exercise.
"Red hair Daddy."
I'm not accustomed to denying Schuyler her requests, particularly the ones she makes on her device. But, um, this might have to be the first.
Well, okay. Maybe just a hint of red. Maybe. She did ask nicely.
The Seedy Side of eBay
I finally listed my used Vans and Chuck Taylors on eBay this weekend. It's the first time I've ever listed something on eBay, but I believe I got it mostly right. I think I was pretty straight-forward in my descriptions of the shoes. I don't think anyone is going to open a box and say "Hey, wait a minute. These aren't new!"
Here's what you won't see there, however. There are two pairs of shoes that I listed that I described as "well worn". I didn't pull any punches about their condition, but I listed them because in both cases, when I've worn them in public, I've had people ask about them and tell me that they aren't in production anymore. One of them, a pair of black checkered Vans high tops (yeah, Vans, not Converse) have been especially coveted.
When I went to eBay check on how things were going, I found that these shoes had been deleted. I wasn't 100% shocked, since I know they have rules about the condition of used clothes that are being sold, and while I've seen some nasty nasty stuff listed on eBay, these were pretty worn out shoes I was listing.
What puzzled me was the reason for the deletion, which occurred due to "miscategorization":
Materials adult in nature or otherwise not appropriate for minors (individuals under 18 years of age) may only be listed in eBay's Mature Audiences area.
Wow. It didn't even occur to me to market directly to that lucrative shoe fetish crowd.
Here's what you won't see there, however. There are two pairs of shoes that I listed that I described as "well worn". I didn't pull any punches about their condition, but I listed them because in both cases, when I've worn them in public, I've had people ask about them and tell me that they aren't in production anymore. One of them, a pair of black checkered Vans high tops (yeah, Vans, not Converse) have been especially coveted.
When I went to eBay check on how things were going, I found that these shoes had been deleted. I wasn't 100% shocked, since I know they have rules about the condition of used clothes that are being sold, and while I've seen some nasty nasty stuff listed on eBay, these were pretty worn out shoes I was listing.
What puzzled me was the reason for the deletion, which occurred due to "miscategorization":
Materials adult in nature or otherwise not appropriate for minors (individuals under 18 years of age) may only be listed in eBay's Mature Audiences area.
Wow. It didn't even occur to me to market directly to that lucrative shoe fetish crowd.
April 2, 2006
The Gift of Quackage
You know, you can go into a weekend with crappy old health problems and brand new health problems and crappy old money concerns and both old and new child worries and inexplicable exhaustion and your old friend depression. A full bag.
But when it's 80 degrees and sunny outside, and there are baby ducks in the pond outside your front door, I can tell you that eventually you're going to grab a bag of saltines, a camera and a happy little jabbery kid, and you're going to go play with the ducks.
Sometimes you need some breaks in life, and you might not get those breaks, at least not right away.
But you get baby ducks, and you appreciate them.
But when it's 80 degrees and sunny outside, and there are baby ducks in the pond outside your front door, I can tell you that eventually you're going to grab a bag of saltines, a camera and a happy little jabbery kid, and you're going to go play with the ducks.
Sometimes you need some breaks in life, and you might not get those breaks, at least not right away.
But you get baby ducks, and you appreciate them.
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