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?
15 comments:
Hey, thanks for answering my question, I feel like I'm famous now!
Tell Julie Happy Mom's day from all of us, what are you and Schuyler doing with her for something special?
I haven't taken the time to go back in your archives and read about Schuyler from the beginning, just from a few months ago when I started being one of your groupies.
I'm guessing CBPS is cerebral paulsey? Didn't know that about her. My brother had a fifth grade teacher with that. He could speak but was hard to understand him at first. I'd see him driving around town and he's quite the accomplished guy.
It makes a lot of sense to weigh all of the risks....hard decisions.
But Schuyler is stinkin' cute and cool!
This is CBPS. It's not cerebral palsy; Schuyler is not physically impaired beyond her slight motor control issues. But several of the kids in her box class have CP. I suspect most device users have some form of CP.
Oh yay! Non-blogger users can comment again. It's such a supreme hassle if you don't have a blogger account. You have to open one, and you have to either pretend to want a blogger blog, or figure out all the technical crap they ask of you if you're using typepad (so you'll give up and start a blogger blog). I've never gotten past the second window of forms.
Anyway, glad to hear all's well with your eyes! I cannot imagine writing for three blogs. I myself have two and one of them goes begging constantly.
Good thing I only have one kid. Certain types of multitasking escape me.
I had anonymous commenting turned back on, but at some point Blogger changed the settings back. I have no idea when, or why.
OK, I'm a dork!
Just guessing what it was with the initials.
Never heard of it before until now. Is this different than having epilepsy by itself.
Sorry if you think these are stupid questions, just trying to get educated here...got to respect that!
Thanks for the info.
Happy Mother's Day, Julie!
I'd like to hear more of an answer to the question about Schuyler using her BBOW. I'm sure she uses it, obviously it is a big part of her life. I'd LOVE to hear more about it. I'm talking quotes here! Give us QUOTES! Remember the time you made that movie of her doing things like saying "Eat grape" and eating grapes? That's the kind of thing! I want to hear what Schuyler has to SAY...even if it is just mundane day-to-day type stuff.
isn't is just "eels" and not "the eels?"
From the FAQ at the band's website (which is, incidentally, www.theeels.com):
Q: Is it "EELS" or "THE EELS"?
A: Technically speaking, it's just "EELS." But we all say "THE EELS" a lot, so feel free to say whatever you want. EELS, THE EELS, EELS THE, whatever.
I feel the same way about the BBOW. I'd like to hear more details like how she uses it, how often, etc. It's fascinating because it's unique, like hieroglyphics or Esperanto, but at the same time there must be similarities with learning another (ordinary) language. Does she use it eagerly or does she have to be prodded? Does it have your voice or someone else's? Who lugs it around? Does she use it in the middle of a movie or in the park or at McDonalds? Or right now, as a beginner, just mostly during school and during more focused learning times?
And--just curious--why did you ask if the person who asked about the BBOW was kidding? Maybe it's because you perceive yourself as talking about it all the time. But...You really don't talk about it all that often and then, mostly in passing.
Perhaps I'll write about it this week, then.
The last one about New York was a trick, of course. Thanks for answering my questions!!
Rob,
One thing I've wondered is whether it seems at this point based on Schuyler's use of her words on the box is whether or not she seems of normal intelligence for her age based on what she knows.
You're getting really good with your camera. I'm jealous at your upgrade--I'm still using the Digital Elph.
I think it's clear, from the things Rob has written, that Schuyler is smarter than most of us who post here.
And a lot classier, too.
I have this mental image of her wagging her BBOW into the movies with her dad, turning the volume down to a whisper to be considerate of others, and after suffering through several minutes of something they were misled into seeing, punching up a quiet "Dad, this sucks, let's go to Sonic" on the box. Hee.
I'd subsribe to a podcast for sure.
Post a Comment