Schuyler has been flapping lately.
If you don't know what I'm talking about, arm-flapping is a behavior that is generally associated with autism and also with mentally retarded children to a lesser degree. Doctors believe that it is a calming behavior, a way to satisfy a need for constant movement and a compensation for the restrictive nature of their world, a place in which they are inexplicably trapped.
I'm not sure how it applies to Schuyler. She's not autistic. In fact, when you read the descriptions of autistic children, you find that whatever her monster might be, it's not very much like autism at all.
As for The R Word, it is so hard to get an IQ determination on a non-verbal child that it could still be years before we have an answer to that fun possibility, but all indications at this point suggest that Schuyler's delays are mostly communicative and not as a result of any significant retardation.
Nevertheless, the kinds of neurological disorders that kids like Schuyler suffer from are closely related and not very well understood, enough so that we can't discard any connections. Here are a few mostly unrelated facts that, considered together, seem to dance menacingly around the edges of Schuyler's future.
1. Between 80 and 85 percent of kids with Congenital Bilateral Perisylvian Syndrome develop seizures, usually beginning between the ages of six and ten. These seizures are usually fairly serious, sometimes even fatal, although they usually decrease in severity around the age of twenty or so.
2. Approximately 35-40 percent of children with epilepsy also suffer from some degree of mental retardation. Kids with MR and epilepsy have a mortality rate double of that of MR kids without seizures.
3. One in four autistic children will develop seizures.
While not much of this deals with Schuyler directly, it nevertheless brings up a troubling possibility. Could Schuyler's recent bout of flapping indicate the long-dreaded onset of seizures?
We don't talk about these probable future seizures very much. Almost not at all, actually. It's the elephant in the room. But it's a constant fear, one last ugly surprise that her monster is waiting to inflict on her. We have no idea if she'll get them, although the odds are not in her favor, and we have absolutely no way to know when they'll come or how bad they'll be. So our fears take over. Flapping, which might be simply her way of bleeding off some of her limitless energy, become a harbinger of menace.
I love Schuyler, fiercely. She is the joy of my life, even as she's also the sorrow. Happiness and sadness go hand in hand with broken kids, you can't separate them. She's mostly a happy, vibrant little girl, and while she gets frustrated at her situation, we do everything we can to take her burden and her sadness and make it our own. But when the seizures come, if they come, they'll pounce on her and turn her world inside out, and there won't be a goddamned thing we can do but watch it happen.
Sometimes the worst part of Schuyler's monster is the stuff it has yet to spring on her.
March 8, 2006
March 7, 2006
We all have something to say.
If you are interested in being an original person with a unique statement to make and you feel inclined to boldly attach your name (which is apparently A. Nonny Moose) to that statement, here's one that you might want to avoid since it has in fact been made before, on more than one occasion, by clever people just like yourself.
"Get over it! You don't hear Schuyler complaining, do you?"
Ha! Get it? Because Schuyler's a mute and can't speak! That's fucking hi-larious! I can't imagine why the human stain who came up with that one wouldn't want to sign their name to that comedy gold.
Here's the only problem. Schuyler actually complains from time to time. She doesn't open her mouth and say "Man, it sucks, not being able to talk." She also doesn't use her device to say anything like that, mostly because she's still at the developmental stage where she uses her device mostly to identify and question, not express independent thought. She'll get there one day, and if you think she won't at some point use her device to say "Wow, being a mute fucking blows," then you don't know Schuyler at all. Which of course you don't if you're simply an anonymous commenter who is simply trying to be a dick.
Schuyler gets frustrated. She tries to express thoughts that are too complex for her device, and when we don't get it, she sighs sadly or crosses her arms angrily or wails in exasperation. If you think her monster is worse than mine, well, you're right. If you think she never expresses frustration because of it, you're an idiot.
If Schuyler had a blog, what would she say? Well, she's six, so she'd probably just tell you that she's a pretty princess and if you make fun of her, she'll have King Kong kick your ass.
"Get over it! You don't hear Schuyler complaining, do you?"
Ha! Get it? Because Schuyler's a mute and can't speak! That's fucking hi-larious! I can't imagine why the human stain who came up with that one wouldn't want to sign their name to that comedy gold.
Here's the only problem. Schuyler actually complains from time to time. She doesn't open her mouth and say "Man, it sucks, not being able to talk." She also doesn't use her device to say anything like that, mostly because she's still at the developmental stage where she uses her device mostly to identify and question, not express independent thought. She'll get there one day, and if you think she won't at some point use her device to say "Wow, being a mute fucking blows," then you don't know Schuyler at all. Which of course you don't if you're simply an anonymous commenter who is simply trying to be a dick.
Schuyler gets frustrated. She tries to express thoughts that are too complex for her device, and when we don't get it, she sighs sadly or crosses her arms angrily or wails in exasperation. If you think her monster is worse than mine, well, you're right. If you think she never expresses frustration because of it, you're an idiot.
If Schuyler had a blog, what would she say? Well, she's six, so she'd probably just tell you that she's a pretty princess and if you make fun of her, she'll have King Kong kick your ass.
March 6, 2006
Unhappy Feet
Behold, Dr. Zen's Titan Diabetic Shoe! I do believe that this may just be the most horrible thing I have ever seen in my life. If you saw someone wearing that shoe, you'd want to know what sort of bizarre alien flipper they were hiding inside. And for $109, the Titan Gimp Tard Flipper Shoe does more than suck away your dignity. It drains your bank account, too!
I'm making fun of this shoe because it was one of the worst I found. The truth is, there are actually some that aren't too bad at all, including this semi-badass boot. (How embarrassing would it be to get your ass kicked by a guy wearing orthopedic shoes? Think about that before you trifle with the Rob.) Until Converse decides to tap into the previously underexplored hipster gimp market, this might be the best I can do. (Keep in mind that no matter how Frankensteinian these shoes may look, they'll be even more monsteriffic in a men's thirteen. Nuhr!)
The reason I'm even looking at these shoes is that I've been following up on why my feet hurt so badly. It's called Peripheral Neuropathy, and it's fun fun fun. Basically, it's a relatively common neurological disorder that results from damage to the peripheral nerves and affects a lot of diabetics, like sixty percent. The kind I have is called, delightfully, "painful neuropathy", because really, what are the chances that I'd get the kind that tickles?
The thing that all these shoes have in common besides high fashion is that none of them are cheap. I just got off the phone with my insurance carrier (my current one, courtesy of The Monolith). As I could have predicted, they do not in fact cover diabetic shoes, despite that I have both diabetes and feet, which would seem to be the qualifying factors, but what the hell do I know? Once I start my new job, it'll be a few months before I'll be able to change insurance, so until then, I'll look for other solutions such as inserts.
Truthfully, I'm not in a huge hurry to embrace the Way of the Gimpwear. I just want my feet to stop hurting so much, and getting my blood sugar within a normal range will help with that. Just call me Gimpy McStumbles until then.
I'm making fun of this shoe because it was one of the worst I found. The truth is, there are actually some that aren't too bad at all, including this semi-badass boot. (How embarrassing would it be to get your ass kicked by a guy wearing orthopedic shoes? Think about that before you trifle with the Rob.) Until Converse decides to tap into the previously underexplored hipster gimp market, this might be the best I can do. (Keep in mind that no matter how Frankensteinian these shoes may look, they'll be even more monsteriffic in a men's thirteen. Nuhr!)
The reason I'm even looking at these shoes is that I've been following up on why my feet hurt so badly. It's called Peripheral Neuropathy, and it's fun fun fun. Basically, it's a relatively common neurological disorder that results from damage to the peripheral nerves and affects a lot of diabetics, like sixty percent. The kind I have is called, delightfully, "painful neuropathy", because really, what are the chances that I'd get the kind that tickles?
The thing that all these shoes have in common besides high fashion is that none of them are cheap. I just got off the phone with my insurance carrier (my current one, courtesy of The Monolith). As I could have predicted, they do not in fact cover diabetic shoes, despite that I have both diabetes and feet, which would seem to be the qualifying factors, but what the hell do I know? Once I start my new job, it'll be a few months before I'll be able to change insurance, so until then, I'll look for other solutions such as inserts.
Truthfully, I'm not in a huge hurry to embrace the Way of the Gimpwear. I just want my feet to stop hurting so much, and getting my blood sugar within a normal range will help with that. Just call me Gimpy McStumbles until then.
March 5, 2006
Schuyler's take on the Oscars
Every time King Kong wins something, she stands up and claps and hoots.
Schuyler knows which one is her best picture. She's got no use for gay cowboys.
Schuyler knows which one is her best picture. She's got no use for gay cowboys.
Beedies for Dummies
Look at that helmet. I had to order it online to get one that wasn't decorated like an MTV ad or shaped like some sort of H.R. Giger creation. I'm all about the simplicity, especially since I'm riding this big Mister Rogers bicycle that doesn't exactly cry out "aerodynamic". Well, and really, neither does my general body shape. No reason my head should slice through the air with ease when the rest of me is putting up such resistance.
I toyed with whether or not my low-impact workout was even going to require a helmet, but if I expect Schuyler to wear one when we're out riding, then I obviously have to set my fatherly example. Also, I still have no idea what will happen to my body when my blood sugar gets weird. I know that when it spikes, my feet hurt, my vision gets blurry, and I get crazy zombie tired, almost to the point of passing out. Well, that's fun. I suppose a helmet is in order. Perhaps I should wear it all the time.
So right this moment, I'm at The Monolith, looking at a magazine called Diabetes Explorer: Type II Essentials. The dietary management section is fun, in that "makes me want to stick something sharp in my jugular" sort of way. Here's a quick list of common high ("bad, will kill you very quickly") and low ("not as bad, but it's still food, so eventually, you're fucked") glycemic foods.
The bad ones are soda, hard candy, white bread, potatoes, bagels, white rice (ah, my sweet sweet rice, I shall miss you so), pineapple, watermelon, cantaloupe (which of course I just ate a whole bowl of last night, shortly before leaving my body for a little whimsical flight around the ether), raisins, popcorn.
On the other hand, I can have peanuts, lots of citrus, milk and beans. Ah, the magical fruit. That's good news for me, not so much for the rest of you.
It also talks about how to read nutritional labels. "If dietary fiber is 5 grams or greater then deduct this amount from the total carbohydrate; next, subtract 1/2 of the total amount of sugar alcohol."
Oh crap. The Beedies requires math? I'm going to die for sure.
I toyed with whether or not my low-impact workout was even going to require a helmet, but if I expect Schuyler to wear one when we're out riding, then I obviously have to set my fatherly example. Also, I still have no idea what will happen to my body when my blood sugar gets weird. I know that when it spikes, my feet hurt, my vision gets blurry, and I get crazy zombie tired, almost to the point of passing out. Well, that's fun. I suppose a helmet is in order. Perhaps I should wear it all the time.
So right this moment, I'm at The Monolith, looking at a magazine called Diabetes Explorer: Type II Essentials. The dietary management section is fun, in that "makes me want to stick something sharp in my jugular" sort of way. Here's a quick list of common high ("bad, will kill you very quickly") and low ("not as bad, but it's still food, so eventually, you're fucked") glycemic foods.
The bad ones are soda, hard candy, white bread, potatoes, bagels, white rice (ah, my sweet sweet rice, I shall miss you so), pineapple, watermelon, cantaloupe (which of course I just ate a whole bowl of last night, shortly before leaving my body for a little whimsical flight around the ether), raisins, popcorn.
On the other hand, I can have peanuts, lots of citrus, milk and beans. Ah, the magical fruit. That's good news for me, not so much for the rest of you.
It also talks about how to read nutritional labels. "If dietary fiber is 5 grams or greater then deduct this amount from the total carbohydrate; next, subtract 1/2 of the total amount of sugar alcohol."
Oh crap. The Beedies requires math? I'm going to die for sure.
"I didn't say she was crazy..."
As I begin my final week at The Monolith, I have two stories about two different customers I encountered on two consecutive days.
The first customer came into the department about an hour before the store closed. She was young and very attractive, in that North Dallas sort of way. She had blonde hair with highlights, a tan that was not even remotely natural, and perfectly perfect breasts for which I am pretty sure she had a receipt. Still, a hot woman is a hot woman, especially when she talks to you intensely and flirtatiously, which she was.
We got to talking, and she looked into my eyes the whole time, and when she asked about my tattoo, she took my arm to look at it and held it a little longer than necessary. I'm not usually a person who knows when I'm being flirted with, but it was pretty clear this time. I was having one of those, "Who, me? You talking to me?" moments. Then, after we'd talked a little about heath care (she apparently noticed my gimp tag, which is always quite the draw for the ladies, as you can probably imagine), she said, "Rob, I want to give you my phone number and my email address. There's something I want to show you."
Yeah, she really said that. In my head, I was composing a letter to Penthouse. "I never thought those letters were real, until the day a pretty blonde with big fake titties walked into my store..."
So for what reason do you think she wanted to share her personal contact info with me? She wanted to show me more about a personal healthy living philosophy that she subscribed to, one that changed her life and which would, if I tried it, heal me forever.
There's no easy way to say this.
She drinks pee.
She believes that urine is the purest form of our blood and contains nutrients and healing properties that can even help people with cancer. She drinks it, and she takes little pills that I gather are a concentrated form of, well, pee. If you prefer your pee powdered, there's a product for you, although I suspect it's not waiting for you at your local Whole Foods Market. (God help us all, I'm probably wrong about that.)
Now, I'm no scientist, and I haven't written to her to get more information, but as far as I understand, urine is a waste product. It's the stuff your body doesn't need or want. Pee is not, I truly believe, a beverage.
When she left, she wanted to give me a hug, and when she did, it was an unusually personal one, all close and tight and slightly longer than expected. And yet as male and doggish as I am, I still couldn't help thinking to myself, "God, I hope she doesn't try to kiss me with her pee-drinking mouth..."
Pee.
(How much do you want to bet that at some point in the future, I get an upset email or comment from a pee drinker out there?)
The second customer wasn't so involved or so scary, just startling. She came in inquiring about a certain artist, but when she started to ask, she drew a blank.
"I'm really sorry," she said. "I'm sort of distracted. I just had back surgery and it still feels really weird."
And without skipping a beat, she turned around and hiked up her shirt and SHOWED ME HER SCAR. It was all fresh and bloody and Frankensteinian. I have to confess, I was so startled that I almost forgot to be grossed out. Almost.
So yeah. I'm going to miss retail a little. Just a little.
The first customer came into the department about an hour before the store closed. She was young and very attractive, in that North Dallas sort of way. She had blonde hair with highlights, a tan that was not even remotely natural, and perfectly perfect breasts for which I am pretty sure she had a receipt. Still, a hot woman is a hot woman, especially when she talks to you intensely and flirtatiously, which she was.
We got to talking, and she looked into my eyes the whole time, and when she asked about my tattoo, she took my arm to look at it and held it a little longer than necessary. I'm not usually a person who knows when I'm being flirted with, but it was pretty clear this time. I was having one of those, "Who, me? You talking to me?" moments. Then, after we'd talked a little about heath care (she apparently noticed my gimp tag, which is always quite the draw for the ladies, as you can probably imagine), she said, "Rob, I want to give you my phone number and my email address. There's something I want to show you."
Yeah, she really said that. In my head, I was composing a letter to Penthouse. "I never thought those letters were real, until the day a pretty blonde with big fake titties walked into my store..."
So for what reason do you think she wanted to share her personal contact info with me? She wanted to show me more about a personal healthy living philosophy that she subscribed to, one that changed her life and which would, if I tried it, heal me forever.
There's no easy way to say this.
She drinks pee.
She believes that urine is the purest form of our blood and contains nutrients and healing properties that can even help people with cancer. She drinks it, and she takes little pills that I gather are a concentrated form of, well, pee. If you prefer your pee powdered, there's a product for you, although I suspect it's not waiting for you at your local Whole Foods Market. (God help us all, I'm probably wrong about that.)
Now, I'm no scientist, and I haven't written to her to get more information, but as far as I understand, urine is a waste product. It's the stuff your body doesn't need or want. Pee is not, I truly believe, a beverage.
When she left, she wanted to give me a hug, and when she did, it was an unusually personal one, all close and tight and slightly longer than expected. And yet as male and doggish as I am, I still couldn't help thinking to myself, "God, I hope she doesn't try to kiss me with her pee-drinking mouth..."
Pee.
(How much do you want to bet that at some point in the future, I get an upset email or comment from a pee drinker out there?)
The second customer wasn't so involved or so scary, just startling. She came in inquiring about a certain artist, but when she started to ask, she drew a blank.
"I'm really sorry," she said. "I'm sort of distracted. I just had back surgery and it still feels really weird."
And without skipping a beat, she turned around and hiked up her shirt and SHOWED ME HER SCAR. It was all fresh and bloody and Frankensteinian. I have to confess, I was so startled that I almost forgot to be grossed out. Almost.
So yeah. I'm going to miss retail a little. Just a little.
March 3, 2006
Gummy Bear
Okay, a lot of you have said it before, and I never completely agreed, but...
NOW she looks like a young Drew Barrymore.
NOW she looks like a young Drew Barrymore.
Festivals and Monsters
I didn't realize it until a friend pointed it out today, but apparently the Zilker Kite Festival in Austin is this Sunday. I'm really disappointed that I let this get away from us. For a year now, I've been looking forward to taking Schuyler back along with the Big Red Monster, and then I totally forgot about it when the moment came. I feel like I let Schuyler down a little, to be honest; I may have to take her out tomorrow for our own little kite festival.
This might be a little hard to explain. I love the time I get to spend with Julie and with my various friends, and also the time I spend with Julie and Schuyler together. It's when it's just Schuyler and me, however, that I think I feel the most at peace with what Britten, in his opera Billy Budd, refers to as "this grand rough world".
Things have become complicated for Schuyler and I both; I spent so long contemplating what her life will be like once I learned that she was broken. Now we're sort of broken together, and in a strange and wordless way, we've become closer. When we go out in our matching gimp tags, she always clicks them together before we leave, as if she's activating our wonder twin powers.
Schuyler behaves differently around friends and family and even when it's just the three of us; she constantly explores and pushes the edges of our group dynamics. But when it's just the two of us, something's different. I know that she doesn't understand that I'm sick exactly, but she senses that things are different, and she treats me differently as a result. When we sit on the couch together, she's leans her head against me. She kisses my hand before she goes to sleep. And when the three of us are riding in Julie's car somewhere, Schuyler has taken to asking me to sit in the back seat with her, where she can fake-whisper her secrets in my ear. In her own quiet, intuitive way, she's picked up on my need for some sort of reassurance. More than that, she seems to see that we've both got our own monsters now.
I also colored her hair purple. Maybe that's why she digs me these days.
Speaking of dramatic changes, Schuyler lost her other front tooth. Surprisingly, she looks much better than she did with just the one loose tooth hanging there. There's something to be said for symmetry, especially where teeth are concerned. She no longer looks like a bottle opener. She now looks like an old man, which is, I suppose, another thing we now have in common.
This might be a little hard to explain. I love the time I get to spend with Julie and with my various friends, and also the time I spend with Julie and Schuyler together. It's when it's just Schuyler and me, however, that I think I feel the most at peace with what Britten, in his opera Billy Budd, refers to as "this grand rough world".
Things have become complicated for Schuyler and I both; I spent so long contemplating what her life will be like once I learned that she was broken. Now we're sort of broken together, and in a strange and wordless way, we've become closer. When we go out in our matching gimp tags, she always clicks them together before we leave, as if she's activating our wonder twin powers.
Schuyler behaves differently around friends and family and even when it's just the three of us; she constantly explores and pushes the edges of our group dynamics. But when it's just the two of us, something's different. I know that she doesn't understand that I'm sick exactly, but she senses that things are different, and she treats me differently as a result. When we sit on the couch together, she's leans her head against me. She kisses my hand before she goes to sleep. And when the three of us are riding in Julie's car somewhere, Schuyler has taken to asking me to sit in the back seat with her, where she can fake-whisper her secrets in my ear. In her own quiet, intuitive way, she's picked up on my need for some sort of reassurance. More than that, she seems to see that we've both got our own monsters now.
I also colored her hair purple. Maybe that's why she digs me these days.
Speaking of dramatic changes, Schuyler lost her other front tooth. Surprisingly, she looks much better than she did with just the one loose tooth hanging there. There's something to be said for symmetry, especially where teeth are concerned. She no longer looks like a bottle opener. She now looks like an old man, which is, I suppose, another thing we now have in common.
March 2, 2006
Another Miracle of Modern Medicine
One of the nice things about having an online presence (I still hate that other word) is that friends out there in the world will send me cool links to stories about a new diabetes drug made from the slobber of Gila Monsters.
The funny thing is, as far as I can tell, the official site for the drug doesn't mention anywhere that it is made from gila monster drool. Perhaps I'm alone in this, but that's the fun fact that makes me want to learn more about it.
I love that in the midst of all the side effects warnings (the usual fun items like throwing up and diarrhea, cha cha cha), it lists "feeling jittery". I don't know why that cracks me up so much. I halfway expect to see a warning like, "Possible side effects may include the heebie jeebies, the creeps, and the willies."
It's another injectable medicine, by the way. Supposedly it's virtually pain free, so that's good news if you're naive enough to believe it. ("Inject this into your stomach! It doesn't hurt, I promise.") Maybe I should just get a gila monster of my own and let him bite me right before meals. It would make eating out at restaurants more fun.
"You don't mind if I do this at the table, do you?"
I'd name him Frank. I have no idea why. Well, whatever. Look at that photo. Tell me that's not a Frank.
The funny thing is, as far as I can tell, the official site for the drug doesn't mention anywhere that it is made from gila monster drool. Perhaps I'm alone in this, but that's the fun fact that makes me want to learn more about it.
I love that in the midst of all the side effects warnings (the usual fun items like throwing up and diarrhea, cha cha cha), it lists "feeling jittery". I don't know why that cracks me up so much. I halfway expect to see a warning like, "Possible side effects may include the heebie jeebies, the creeps, and the willies."
It's another injectable medicine, by the way. Supposedly it's virtually pain free, so that's good news if you're naive enough to believe it. ("Inject this into your stomach! It doesn't hurt, I promise.") Maybe I should just get a gila monster of my own and let him bite me right before meals. It would make eating out at restaurants more fun.
"You don't mind if I do this at the table, do you?"
I'd name him Frank. I have no idea why. Well, whatever. Look at that photo. Tell me that's not a Frank.
March 1, 2006
It's a shoe. In a tree.
Really, it's pretty self-explanatory. Julie and I went for a jog (for her) slash bike ride (for lazy old me) the other day, and we saw not one but TWO pairs of tennis shoes, tied together at the laces and thrown high into the trees. For the life of me, I can't imagine what that's all about. Perhaps it's a gang thing, in white bread North Dallas. Look for the cool kids in their socks.
One person posted on flickr that they'd heard it meant that there are drugs available in the area. Seing as how it's North Dallas and next to two different schools, that's probably a safe bet.
In unrelated news, did you know that having the Beedies makes you tired as fuck all the time? Why, neither did I! Isn't that AWESOME?
Fuckin' pancreas.
One person posted on flickr that they'd heard it meant that there are drugs available in the area. Seing as how it's North Dallas and next to two different schools, that's probably a safe bet.
In unrelated news, did you know that having the Beedies makes you tired as fuck all the time? Why, neither did I! Isn't that AWESOME?
Fuckin' pancreas.
Mystery Monster Soap
First, a little business. If you live in California and recently sent Schuyler some cool Tyrannosaurus soap, please drop me a line so I can thank you properly. I have no idea who sent it.
It's been an interesting two days. After giving my two weeks notice at The Monolith, I came home and celebrated by feeding the ducks with Schuyler and Julie underneath a breathtaking sunset. We all then went out for dinner and celebrated my new job. (Once again, Schuyler ordered her own food.)
I can't tell you how excited I am about this new job. Part of it comes from being about set with The Monolith. It's not a bad job, and I've enjoyed it for the most part, particularly in Austin. But the schedule was becoming increasingly inflexible and was making it hard to do freelance photography work. It also required me to be on my feet for about eight hours a day, which was beginning to become difficult. Tonight was brutal, and as I sit here writing this, my dogs are still barking, as those yokels are fond of saying.
But I'm primarily excited about going to work at an actual career-path gig as a writer and communications guy. (That's what the job description says, "Communications Guy". No, it doesn't really. It would be cool if it did, though. I'd get cards made up.) The person I'll be working for seems like a nice guy who isn't at all interested in micromanaging me, which will be a welcome change. The hours are much better, about half the time I work now with a slight increase in pay, and good benefits. I'll even get to use a Mac.
And I get to sit down. At this precise moment in time, that might actually sound like the sweetest part to me.
It's been an interesting two days. After giving my two weeks notice at The Monolith, I came home and celebrated by feeding the ducks with Schuyler and Julie underneath a breathtaking sunset. We all then went out for dinner and celebrated my new job. (Once again, Schuyler ordered her own food.)
I can't tell you how excited I am about this new job. Part of it comes from being about set with The Monolith. It's not a bad job, and I've enjoyed it for the most part, particularly in Austin. But the schedule was becoming increasingly inflexible and was making it hard to do freelance photography work. It also required me to be on my feet for about eight hours a day, which was beginning to become difficult. Tonight was brutal, and as I sit here writing this, my dogs are still barking, as those yokels are fond of saying.
But I'm primarily excited about going to work at an actual career-path gig as a writer and communications guy. (That's what the job description says, "Communications Guy". No, it doesn't really. It would be cool if it did, though. I'd get cards made up.) The person I'll be working for seems like a nice guy who isn't at all interested in micromanaging me, which will be a welcome change. The hours are much better, about half the time I work now with a slight increase in pay, and good benefits. I'll even get to use a Mac.
And I get to sit down. At this precise moment in time, that might actually sound like the sweetest part to me.
February 26, 2006
Plum.
Okay, I lied about waiting to see what everyone had to say about the idea. Plum it is.
She loves it. She posed in front of the mirror for about 20 minutes and had me call Julie at work so she could shout "ur-oh air!" ("purple hair") into the phone. She just went to bed, still fluffing it and giggling.
It wasn't as outlandish as she wanted, or as we feared. But it was fun. She sat in the bathtub patiently as her clearly closeted father applied the very very purple mousse stuff to her head. We sang songs and pretended that the stuff dripping from my gloved fingers was blood and generally had fun for half an hour, and then rinse rinse rinse, and a star was born.
Most of the purple came off her face and the back of her neck, I'm happy to report. The bottle says it should wash out in eight to ten shampoos, which in Schuyler's case means in like six months.
Maybe you think it was indulgent to do this for her, but she loved it and she's unlikely to have a job interview in the next few weeks. If she asks for a tattoo next, I'm putting my foot down, though. Not until she's seven, and that's final.
She loves it. She posed in front of the mirror for about 20 minutes and had me call Julie at work so she could shout "ur-oh air!" ("purple hair") into the phone. She just went to bed, still fluffing it and giggling.
It wasn't as outlandish as she wanted, or as we feared. But it was fun. She sat in the bathtub patiently as her clearly closeted father applied the very very purple mousse stuff to her head. We sang songs and pretended that the stuff dripping from my gloved fingers was blood and generally had fun for half an hour, and then rinse rinse rinse, and a star was born.
Most of the purple came off her face and the back of her neck, I'm happy to report. The bottle says it should wash out in eight to ten shampoos, which in Schuyler's case means in like six months.
Maybe you think it was indulgent to do this for her, but she loved it and she's unlikely to have a job interview in the next few weeks. If she asks for a tattoo next, I'm putting my foot down, though. Not until she's seven, and that's final.
The Chubbin had a good day
The sun came out today, and we made the most of it. Schuyler finally got to tear around the bike trail on her hot pink Stingray (with purple flames, don't forget), and then we met up with some friends who were in town to visit the Dallas Zoo.
I really don't have much else to say, nothing pithy or world-changing. I had a good day with Schuyler, and that's enough for me.
Oh yeah, one other thing. Schuyler has decided that she wants pink hair, this time for real. At first she wanted purple, but then she decided to run with pink.
She actually said it on her device. "I want pink hair."
Our first thought was "Well, of course not!" And then my second thought was, "Well, why not?"
(I think Julie's still hanging on that first thought.)
We went to Walgreen's to pick up more Beedie supplies, and while we were there, we looked at some of the hair colors. I think if we do this, we're going to compromise and go with her first choice, or actually sort of a plum. I like the idea of shocking the North Dallas folk, but hot pink might be overkill.
So yeah, Schuyler with purple hair. I'm sure someone out there has some thoughts on this.
I really don't have much else to say, nothing pithy or world-changing. I had a good day with Schuyler, and that's enough for me.
Oh yeah, one other thing. Schuyler has decided that she wants pink hair, this time for real. At first she wanted purple, but then she decided to run with pink.
She actually said it on her device. "I want pink hair."
Our first thought was "Well, of course not!" And then my second thought was, "Well, why not?"
(I think Julie's still hanging on that first thought.)
We went to Walgreen's to pick up more Beedie supplies, and while we were there, we looked at some of the hair colors. I think if we do this, we're going to compromise and go with her first choice, or actually sort of a plum. I like the idea of shocking the North Dallas folk, but hot pink might be overkill.
So yeah, Schuyler with purple hair. I'm sure someone out there has some thoughts on this.
February 25, 2006
The Lost Toofer
Schuyler lost a tooth today. It's the second one to go in just a few weeks.
And that other one in the front, the one that makes her look like a bottle opener? It's coming out any day now. It's currently flapping in the breeze like a loose shingle.
Julie and I have a differing philosophy about the losing of teeth. She's of the "pull it" school; the one that came out today had help from her. The thought of pulling a tooth makes me queasy; I'd just as soon she loose it while she's eating. I suppose there's a theoretical choking hazard, but honestly, they are tiny little teeth.
We'll see how this next one makes its escape. She's going to look like a happy little doofus soon. A toothless doofus, like her old man.
And that other one in the front, the one that makes her look like a bottle opener? It's coming out any day now. It's currently flapping in the breeze like a loose shingle.
Julie and I have a differing philosophy about the losing of teeth. She's of the "pull it" school; the one that came out today had help from her. The thought of pulling a tooth makes me queasy; I'd just as soon she loose it while she's eating. I suppose there's a theoretical choking hazard, but honestly, they are tiny little teeth.
We'll see how this next one makes its escape. She's going to look like a happy little doofus soon. A toothless doofus, like her old man.
February 24, 2006
On raising a cyborg princess
I've been reading about how difficult it is to be a parent, from people with all sorts of different perspectives. I feel like I should confess something.
It isn't hard being Schuyler's parent.
She's independent, but she's respectful of us and others. She's non-verbal, but she communicates pretty clearly, and lately I swear her speech has become slightly more recognizable. She's rarely frustrating, and never loses her temper. And I find that around her, we are the same way. Schuyler is, in every way that is realistically possible, growing up to be exactly the little girl we want her to be.
Julie and I aren't perfect parents, not even close. We make mistakes, lots of them. And honestly, we're not always that good to each other as spouses. But something about the way we work together with Schuyler, and the way we interact with her individually, has worked out exactly right. I don't always see how well or poorly I do as a father, but tonight, I can see things more clearly than usual. I can see that Julie and I do okay.
We talk a lot, in probably an obnoxious way, about raising Schuyler without physically punishing her, ever. And I know not everyone agrees with that, and that's cool. I get on my high horse about corporal punishment because I think the idea of hurting a child is loathsome. I am never more of a pacifist than when it comes to children.
But here's a little confession. Another reason it's easy for us to refrain from hitting Schuyler is that Schuyler never takes us to that place. As judgmental as I can be about this topic, I must confess that I don't get tempted by the dark side very often, if ever.
We're a weird little family, and maybe not like yours. Actually, I can guarantee we're not like yours. A lot of people look at us and wonder how we function at all. I wonder the same thing myself sometimes.
The answer is Schuyler. She does her thing with a happy heart, despite her monster, and she makes the rest of us better people for knowing her. If I'm a good father, it's only because Schuyler makes me one. Because of that simple and undeniable fact, I try to be careful about judging other parents and how they do what they do. They're at a disadvantage, as far as I'm concerned. They don't have a Schuyler.
As for Julie, I'm trying to convince her to contribute to this blog. She's resistant to the idea; she remembers what a bunch of weirdos you people are, after all. I'll keep working on her, though.
It isn't hard being Schuyler's parent.
She's independent, but she's respectful of us and others. She's non-verbal, but she communicates pretty clearly, and lately I swear her speech has become slightly more recognizable. She's rarely frustrating, and never loses her temper. And I find that around her, we are the same way. Schuyler is, in every way that is realistically possible, growing up to be exactly the little girl we want her to be.
Julie and I aren't perfect parents, not even close. We make mistakes, lots of them. And honestly, we're not always that good to each other as spouses. But something about the way we work together with Schuyler, and the way we interact with her individually, has worked out exactly right. I don't always see how well or poorly I do as a father, but tonight, I can see things more clearly than usual. I can see that Julie and I do okay.
We talk a lot, in probably an obnoxious way, about raising Schuyler without physically punishing her, ever. And I know not everyone agrees with that, and that's cool. I get on my high horse about corporal punishment because I think the idea of hurting a child is loathsome. I am never more of a pacifist than when it comes to children.
But here's a little confession. Another reason it's easy for us to refrain from hitting Schuyler is that Schuyler never takes us to that place. As judgmental as I can be about this topic, I must confess that I don't get tempted by the dark side very often, if ever.
We're a weird little family, and maybe not like yours. Actually, I can guarantee we're not like yours. A lot of people look at us and wonder how we function at all. I wonder the same thing myself sometimes.
The answer is Schuyler. She does her thing with a happy heart, despite her monster, and she makes the rest of us better people for knowing her. If I'm a good father, it's only because Schuyler makes me one. Because of that simple and undeniable fact, I try to be careful about judging other parents and how they do what they do. They're at a disadvantage, as far as I'm concerned. They don't have a Schuyler.
As for Julie, I'm trying to convince her to contribute to this blog. She's resistant to the idea; she remembers what a bunch of weirdos you people are, after all. I'll keep working on her, though.
Tasty treat for the Rob
How is it that until my best friend at work introduced me to them a few weeks ago, I never knew about blood oranges?
I guess part of why I never knew about them is that they are apparently only available part of the year, and until recently, the produce section of the grocery store was a weird and foreign place that I rarely ventured. Planet Rob didn't have a lot of fruits and vegetables, I confess.
Well, I was missing out. Blood oranges are delicious, and cool to eat, too. I should read up to see what gives them their horror-show appearance, since for all I know, it's something that's on the Forbidden Rob Foods list. (Am I allowed to consume blood? Let me check my Beedies exchange pocket guide.) But yeah, it looks like blood. If you peel a slice just right, it looks like you're a zombie, dining on human body parts. Tell me a cooler way to eat if you can. You can't.
I realize that sweet fruits are still probably not the best snack for me; much better that I eat a raw carrot or a stack of Post-it notes. But compared to the things I used to eat, it's a huge step in the right direction. They're not fried, and they're not coated in chocolate. Let me be.
I feel like a vampire right now, and a workplace vampire at that.
I guess part of why I never knew about them is that they are apparently only available part of the year, and until recently, the produce section of the grocery store was a weird and foreign place that I rarely ventured. Planet Rob didn't have a lot of fruits and vegetables, I confess.
Well, I was missing out. Blood oranges are delicious, and cool to eat, too. I should read up to see what gives them their horror-show appearance, since for all I know, it's something that's on the Forbidden Rob Foods list. (Am I allowed to consume blood? Let me check my Beedies exchange pocket guide.) But yeah, it looks like blood. If you peel a slice just right, it looks like you're a zombie, dining on human body parts. Tell me a cooler way to eat if you can. You can't.
I realize that sweet fruits are still probably not the best snack for me; much better that I eat a raw carrot or a stack of Post-it notes. But compared to the things I used to eat, it's a huge step in the right direction. They're not fried, and they're not coated in chocolate. Let me be.
I feel like a vampire right now, and a workplace vampire at that.
February 23, 2006
Beautiful Freak
It seems weird to me to have to talk about this again, considering how many times I've written about it on my journal, and I thought people got it. In any case, this is a new blog, and possibly a new readership, so let's talk about the name of this blog, and the kind of language I use when I describe Schuyler.
"My Beloved Monster & Me" is a song by the Eels, a favorite "group" (mostly one guy) of mine, and whose music I've always identified with Schuyler. If you don't like "My Beloved Monster", I can only imagine how you'll feel about "Beautiful Freak".
("You're such a beautiful freak. I wish there were more just like you. You're not like all of the others, and that is why I love you, beautiful freak, beautiful freak... Some people think you have a problem, but that problem lies only with them. Just 'cause you are not like the others. But that is why I love you, beautiful freak, beautiful freak...")
Schuyler is a beautiful freak. She's not like the others. She never will be, and she'll hear words like "freak" and "monster" one day. Those words will hurt her less if she already owns them. Some special needs parents need soft language like "handicapable" and "differently abled" to shield their sensitive children, and I understand some kids need that. I think the parents need it more, to be honest, but again, I understand why, completely.
Schuyler's different. She's also tough as nails. She rarely cries except in anger. She doesn't disobey on the major points very often, but in trivial matters, she delights in confounding us. She is a princess, and she is a turd. And the prettier she gets, the wilder she gets, too. She'll need that when she's older, and if there's one thing I'm confident of, it's that she'll have it. The first time someone calls her a freak, I hope she'll remember that she was a beautiful freak. If someone calls her a monster, maybe she'll remember that she was a beloved monster.
Or more likely, she'll pop someone in the mouth. That works, too.
She's feeling better this evening, after kind of a rough, pukey morning. Her nickname today has been Barfbag, which she thinks is pretty funny. I'd call her Barfbag, and she'd laugh and say "Noooooooooo!"
Holy crap, I love this kid.
"My Beloved Monster & Me" is a song by the Eels, a favorite "group" (mostly one guy) of mine, and whose music I've always identified with Schuyler. If you don't like "My Beloved Monster", I can only imagine how you'll feel about "Beautiful Freak".
("You're such a beautiful freak. I wish there were more just like you. You're not like all of the others, and that is why I love you, beautiful freak, beautiful freak... Some people think you have a problem, but that problem lies only with them. Just 'cause you are not like the others. But that is why I love you, beautiful freak, beautiful freak...")
Schuyler is a beautiful freak. She's not like the others. She never will be, and she'll hear words like "freak" and "monster" one day. Those words will hurt her less if she already owns them. Some special needs parents need soft language like "handicapable" and "differently abled" to shield their sensitive children, and I understand some kids need that. I think the parents need it more, to be honest, but again, I understand why, completely.
Schuyler's different. She's also tough as nails. She rarely cries except in anger. She doesn't disobey on the major points very often, but in trivial matters, she delights in confounding us. She is a princess, and she is a turd. And the prettier she gets, the wilder she gets, too. She'll need that when she's older, and if there's one thing I'm confident of, it's that she'll have it. The first time someone calls her a freak, I hope she'll remember that she was a beautiful freak. If someone calls her a monster, maybe she'll remember that she was a beloved monster.
Or more likely, she'll pop someone in the mouth. That works, too.
She's feeling better this evening, after kind of a rough, pukey morning. Her nickname today has been Barfbag, which she thinks is pretty funny. I'd call her Barfbag, and she'd laugh and say "Noooooooooo!"
Holy crap, I love this kid.
Don't call me Pee Wee.
Apparently the key to beating the Beedies is not just eating paper and water, but exercising as well. Yeah, I knew this already, but you know how it is when you're looking at either going to the apartment's workout room or sitting on the couch. If you go to the workout room, you end up watching whatever crap is on the TV there, usually Oprah. Who needs that kind of sorrow in their life?
But once I got a bicycle, I felt the urge to actually get out and move. Naturally, the day after I got it, it was cold and rainy for four days straight. I sat at home, watching my blood sugar NOT go down, until two days ago when I finally decided to get out and ride no matter what the weather was like.
I'm glad I did. There's a trail that runs right next to my apartment (stalkers and killers take note: it's this one), and it's big and flat and concrete. I see old people on it all the time. Piece of cake.
Except for the hills. I call them hills, but you might refer to them as slight inclines, smartasses that you are, every one of you. In any case, I wasn't expecting there to be HILLS. It was a more vigorous workout than I expected, but I still enjoyed it immensely.
The best part? My blood sugar dropped over a hundred points after each ride; today's 131 was the lowest I've had since the Beedies moved in.
The worst part? Having to walk my bike up a hill in front of one of the many saucy stay-at-home MILFs (out walking her little gerbil dog, an obligatory accessory) that roam freely about North Dallas like the great herds of bison that once covered the western plains.
One hates to look weak in front of the MILFs.
But once I got a bicycle, I felt the urge to actually get out and move. Naturally, the day after I got it, it was cold and rainy for four days straight. I sat at home, watching my blood sugar NOT go down, until two days ago when I finally decided to get out and ride no matter what the weather was like.
I'm glad I did. There's a trail that runs right next to my apartment (stalkers and killers take note: it's this one), and it's big and flat and concrete. I see old people on it all the time. Piece of cake.
Except for the hills. I call them hills, but you might refer to them as slight inclines, smartasses that you are, every one of you. In any case, I wasn't expecting there to be HILLS. It was a more vigorous workout than I expected, but I still enjoyed it immensely.
The best part? My blood sugar dropped over a hundred points after each ride; today's 131 was the lowest I've had since the Beedies moved in.
The worst part? Having to walk my bike up a hill in front of one of the many saucy stay-at-home MILFs (out walking her little gerbil dog, an obligatory accessory) that roam freely about North Dallas like the great herds of bison that once covered the western plains.
One hates to look weak in front of the MILFs.
Well, I suppose it was inevitable...
I know, I said I'd never do it. I'd never give in to the blog craze. All the cool kids were doing it, but I was, you now, Too Cool. Cooler than the cool kids.
The word itself sounded like something my pug might cough up. "Blog." Like cell phones and those funny spinning hubcaps, blogs were new-fangled and scary, not for an old man like myself. And all the good names were taken already, most frustratingly by people who posted one lame entry and then went merrily on their way, never to return.
It was getting harder, however, to post big long entries over at Darn Tootin when I wasn't having big long things happen in my life. (That sounded dirty, but let's move along.) I liked the idea of being able to post short entries without having to make them fit into some larger structure. I love my journal, and I like the idea of being able to write actual essay-type entries over there when the mood strikes me, without any more of those squashy, "here's a bunch of random crap" entries.
So I'm splitting things up a bit, which will hopefully result in better journal entries over there and more entertaining short bits here. As the title of the blog suggests, I anticipate a large percentage of my posts here to be about Schuyler. If that's not your thing, I totally understand, although honestly, I can't imagine you'd be reading this in the first place if you weren't.
(If you are new to my stuff, you really should go read up at Darn Tootin. All shall be revealed there.)
The coolest thing of all? I'm posting this from my flickr page, where it will automatically throw in the photo of my choice. Why didn't someone tell me how easy this is? I feel like everyone's been watching me hand-code my big ugly journal entries like a caveman and snickering behind my back.
I'll tweak all this some more tomorrow. Schuyler will be home all day, as she is sick. Julie called me at work to tell me that Schuyler had gotten extravagantly ill on the way home from school.
"Was it bad?" I asked.
"She had mixed fruit at school," Julie replied.
I could tell from her tone that she had acquired that information the hard way.
The word itself sounded like something my pug might cough up. "Blog." Like cell phones and those funny spinning hubcaps, blogs were new-fangled and scary, not for an old man like myself. And all the good names were taken already, most frustratingly by people who posted one lame entry and then went merrily on their way, never to return.
It was getting harder, however, to post big long entries over at Darn Tootin when I wasn't having big long things happen in my life. (That sounded dirty, but let's move along.) I liked the idea of being able to post short entries without having to make them fit into some larger structure. I love my journal, and I like the idea of being able to write actual essay-type entries over there when the mood strikes me, without any more of those squashy, "here's a bunch of random crap" entries.
So I'm splitting things up a bit, which will hopefully result in better journal entries over there and more entertaining short bits here. As the title of the blog suggests, I anticipate a large percentage of my posts here to be about Schuyler. If that's not your thing, I totally understand, although honestly, I can't imagine you'd be reading this in the first place if you weren't.
(If you are new to my stuff, you really should go read up at Darn Tootin. All shall be revealed there.)
The coolest thing of all? I'm posting this from my flickr page, where it will automatically throw in the photo of my choice. Why didn't someone tell me how easy this is? I feel like everyone's been watching me hand-code my big ugly journal entries like a caveman and snickering behind my back.
I'll tweak all this some more tomorrow. Schuyler will be home all day, as she is sick. Julie called me at work to tell me that Schuyler had gotten extravagantly ill on the way home from school.
"Was it bad?" I asked.
"She had mixed fruit at school," Julie replied.
I could tell from her tone that she had acquired that information the hard way.
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