It seems to me that there are a lot of little pieces of Schuyler that make up who she is, so many mosaic tiles that form her picture. Some of them are tiny, others are large and dictate so much of the shape of her portrait. And most of all, they change, frequently, so much so that sometimes I struggle to keep up.
Schuyler loves fairies now. Dragons are sort of old hat, but dinosaurs still have a place in her world, albeit not as central as before. Mermaids have also lost some of their appeal, although she still loves them and will claim to be one from time to time. And King Kong remains beloved.
Schuyler wants me to buy a Mini Cooper.
Schuyler's hair is slowly going back to its natural color (slowly because apparently "temporary" means something different to the fine folks at L'Oreal), and she hasn't requested a recharge in a while. We usually don't color it during the summer anyway, since she spends so much time in the pool, with its chlorinated water. We'll see what she wants in a few months.
When we drive past this one field full of horses and llamas in Plano, Schuyler loses her mind. Her favorite horse is the white one. And she still knows that llamas say "Om? Om? Om?"
Schuyler seems to be losing her love for Hannah Montana. I'd celebrate, except there's no telling what horribleness will follow. For girls her age, Hannah Montana is about as innocuous as it gets without involving Jesus.
Schuyler is the self-proclaimed Queen of Monkeys.
Having had the opportunity to watch Schuyler with kids her age, including her cousins last weekend, I am learning a few things. The most encouraging is that she seems to be unusually well-adjusted emotionally for her age. She never melts down, she's not terribly materialistic and she shares easily.
The most troubling thing I've realized all over again is also the hardest to say, but here it is: in a lot of ways, both developmentally and even, perhaps, cognitively, Schuyler is still seriously delayed. She doesn't use her device as much as I'd like for her to, largely because her verbal abilities are coming along to the point that we can usually understand her, as can many others who spend time with her regularly. But the fact remains that a lot of what she says goes unfathomed, and she needs to use her device much, much more in her daily life. Consider this a resolution to kick her in the ass, motivationally speaking.
Schuyler's love for pudding defies rational thought.
Schuyler likes to play monster games. Her most recent is the Grass Monster, who apparently lives in the grass (well, yeah) and will grab you like the Kraken if you fail to heed stepping stones. She first came up with it while we were waiting outside a restaurant a few weeks ago, and the fiction of the Grass Monster has grown to near epic proportions. We sort of ganged up on her cousin last weekend and convinced him that there's such a thing as the Grass Monster. I would feel guilty about that, except as father/daughter activities go, it was pretty sweet.
Schuyler had a tiny little wart on her hand. She was bothered by it at first, but then decided that it gave her witch powers and became quite upset when it went away. It recently reappeared, and she couldn't be happier.
Schuyler keeps her coins in a bank that looks like a chocolate rabbit. We call it the Money Bunny. She looks for coins all the time now, and covets the Money Bunny like Silas Marner.
Schuyler watches (and sings the theme song to) Kenny the Shark every morning before school. Well, we all do, really. And then she gets on the bus and goes to school, leaving me with my daily dose of separation anxiety mixed with horrible bus crash paranoid fantasies.
Schuyler always points out "the fuzz" when we're driving around.
Schuyler's condition keeps her from doing some sports, like baseball, but interestingly, I think she might be able to really play soccer. As I wrote before, we tried hooking her up with a local "Don't call it Angel League" angel league, but every time we went, they scrapped the soccer and just played baseball. Schuyler said she didn't want to go anymore, and that was that. In the fall, we'll try again with a different, "You can call us Angel League" angel league. I wouldn't be surprised if she could actually play mainstream soccer, and soon. I've seen some of those girls play, after all.
Schuyler likes to wear hoodies now. Her punkitude is unwavering. She still loves her Chuck Taylors but has chilled on the temporary tattoos.
Schuyler finally got to see the Cloverfield monster, thanks to the wildly inappropriate but "interesting in a cautionary tale sort of way" parenting of her father. I gave her sort of the greatest monster moments version, because I didn't think she'd care about a bunch of hipster wannabes at a party and I thought the little monsters would be too scary for her.
(I was right about the party but wrong about the little monsters, incidentally. I forgot about one scene until it was too late, and she loved it. "Wow!" she whispered, before signing "more" until I complied.)
I asked her what she thought of the actual big monster, and she said on the Big Box of Words, and I quote, "I love him. He my friend. He is biggest. He lives in New York City." (She's not one for spoiler alerts, apparently.)
Speaking of Schuyler's lack of fear, there is one exception. She is still afraid of the water. This is hard because she loves going to the pool, but she won't step away from the edge unless she positively has to. Working on this is going to be a summer project for us.
And speaking of the summer, it looks like we're going to skip all the summer day care trauma altogether this year and just rearrange our schedules so that she can stay with us. This is going to mean that she'll come to work with me from time to time. We'll see how that goes. If nothing else, it'll give me more opportunities to harass her about using her device.
Schuyler and Julie are coming with me to Chicago next November.
When we sign books, Schuyler gets bored with doing it the same way every time. At our last signing, she drew a flower for someone.
Schuyler is learning to lie, which is making for interesting times. She's also experimenting with the idea of "accidentally" leaving her homework at school. Trust me, friend. That doesn't work for long.
She and I talked about her monster recently, in a quiet moment together. She said that she doesn't mind the way things are, because her AAC device makes her different, and she likes that. "I love my voice," she said, indicating her Big Box of Words. She seemed genuinely puzzled that I would even ask.
Sometimes, she says, Schuyler is an eagle.
Sometimes she is Ice Girl.
Sometimes she breaks my heart.
Mostly, she's my "why".
Showing posts with label big box of words. Show all posts
Showing posts with label big box of words. Show all posts
May 7, 2008
April 1, 2008
Is Schuyler a political pundit or a techie futurist?
This question was on Schuyler's home work. I'm still trying to decide what to make of her answer.
-----
New Things
The White House is where the U.S. president lives. Life in this building has changed over time. The White House got its first telephone in 1879. It got electric lights in 1891. An indoor swimming pool was added in 1942. The White House got its first fire alarm in 1965. After that came other new inventions such as computers and cell phone.
1. Make a prediction. What do you think the White House will get next?
Her answer?
"A brain hat."
-----
I asked her about the brain hat. She says it looks like a helmet, hers is yellow and mine is green. "Brain hat help you work."
Where did she get the idea that the current White House occupant needs a brain hat? I guess she's paying attention after all.
-----
New Things
The White House is where the U.S. president lives. Life in this building has changed over time. The White House got its first telephone in 1879. It got electric lights in 1891. An indoor swimming pool was added in 1942. The White House got its first fire alarm in 1965. After that came other new inventions such as computers and cell phone.
1. Make a prediction. What do you think the White House will get next?
Her answer?
"A brain hat."
-----
I asked her about the brain hat. She says it looks like a helmet, hers is yellow and mine is green. "Brain hat help you work."
Where did she get the idea that the current White House occupant needs a brain hat? I guess she's paying attention after all.
March 16, 2008
A Thousand Miles in a Ford Focus
I got back from the book tour a few days ago, and I've been getting caught up on work stuff, and Life stuff, for a few days. (The one thing I haven't gotten caught up on is email, so if you wrote to me within the past three weeks or so and are now thinking "Wow, what a dick!", I am going to answer your mail. I just don't want to respond with some pat little "Hey, thanks for writing, buddy. Buy my book!" Because then you'd be completely justified in thinking, "Wow, what a dick!" I don't mind you thinking that, I'd just like to earn it like in the old days.)
The book tour was a great experience in a lot of ways. There were a few with a big turnout and also a few with maybe a dozen or so people by the end, but I never had an event where the dreaded "what if you had a book signing and no one showed up?" occurred. I got to see writers I dig, like Gwen and Ariel, and a lot of old friends, and I got to meet people who touched me profoundly.
I've read a lot of critiques of the book tour as a marketing tool, and strictly speaking, I agree with much of what I've read. When you factor in travel expenses and hotels and all that, the sales you make on tour aren't going to even cover the cost of the tour itself. Perhaps the real value is in generating buzz and word of mouth, but still.
However, I wouldn't trade the experience of the book tour for anything. It's one thing to write about Schuyler's experiences and my own, and even to receive emails from the people who have been moved by those stories. It's quite another thing to meet people, however. I heard stories from parents who are in the place that we were with Schuyler a few years ago, a place with more questions than answers, and I cried with moms who were just happy to tell their story to someone. Never mind the fact that I was an author in my fancy pants. They were telling their story to someone who'd been there before them, and that was enough. What they didn't realize, perhaps, was how much I got from the experience.
So now it's over, and after driving over a thousand miles around Texas and feeling both very fancy and authorial one minute and then not one bit famous and fabulous at all the next, I'm home. Back to work, and back to play with Schuyler.
Yesterday I took Schuyler to see Horton Hears a Who, and when we got home, she took out her Big Box of Words. Together, we very carefully found all the words she needed (and spelled out a few not on the device), so that when Julie got home from work, Schuyler could tell her something very important she'd learned.
"A person's a person, no matter how small."
Today, Schuyler begins playing soccer, at a local program for special needs children. I took her to a sports supply place the other day and got her outfitted. We're taking Schuyler to play soccer today, and if you're a parent and that sounds like the most boring, every day, every kid sort of thing to write about, I agree.
It sure took a lot of work on Schuyler's part to get there, though.
The book tour was a great experience in a lot of ways. There were a few with a big turnout and also a few with maybe a dozen or so people by the end, but I never had an event where the dreaded "what if you had a book signing and no one showed up?" occurred. I got to see writers I dig, like Gwen and Ariel, and a lot of old friends, and I got to meet people who touched me profoundly.
I've read a lot of critiques of the book tour as a marketing tool, and strictly speaking, I agree with much of what I've read. When you factor in travel expenses and hotels and all that, the sales you make on tour aren't going to even cover the cost of the tour itself. Perhaps the real value is in generating buzz and word of mouth, but still.
However, I wouldn't trade the experience of the book tour for anything. It's one thing to write about Schuyler's experiences and my own, and even to receive emails from the people who have been moved by those stories. It's quite another thing to meet people, however. I heard stories from parents who are in the place that we were with Schuyler a few years ago, a place with more questions than answers, and I cried with moms who were just happy to tell their story to someone. Never mind the fact that I was an author in my fancy pants. They were telling their story to someone who'd been there before them, and that was enough. What they didn't realize, perhaps, was how much I got from the experience.
So now it's over, and after driving over a thousand miles around Texas and feeling both very fancy and authorial one minute and then not one bit famous and fabulous at all the next, I'm home. Back to work, and back to play with Schuyler.
Yesterday I took Schuyler to see Horton Hears a Who, and when we got home, she took out her Big Box of Words. Together, we very carefully found all the words she needed (and spelled out a few not on the device), so that when Julie got home from work, Schuyler could tell her something very important she'd learned.
"A person's a person, no matter how small."
Today, Schuyler begins playing soccer, at a local program for special needs children. I took her to a sports supply place the other day and got her outfitted. We're taking Schuyler to play soccer today, and if you're a parent and that sounds like the most boring, every day, every kid sort of thing to write about, I agree.
It sure took a lot of work on Schuyler's part to get there, though.
February 27, 2008
Comedy monster
My favorite moment from the Weekend America interview didn't actually make it into the broadcast. Reporter Michael May was asking Schuyler questions about how she communicated. She was giving some of her answers on her device, but she was also verbalizing a lot. I was there to help translate, as her words can be hard for the uninitiated to understand.
"Schuyler, how did you talk before you got your device?" he asked.
She thought about it for a few moments, trying to remember back that far. Finally she held up her hands.
"My hands!" she said, indicating that she was learning sign language before she got her Big Box of Words.
As she answered, a smile crept across her face. She then held up her feet and pointed to them, cracking herself up as she answered.
"But not my feet!"
"Schuyler, how did you talk before you got your device?" he asked.
She thought about it for a few moments, trying to remember back that far. Finally she held up her hands.
"My hands!" she said, indicating that she was learning sign language before she got her Big Box of Words.
As she answered, a smile crept across her face. She then held up her feet and pointed to them, cracking herself up as she answered.
"But not my feet!"
December 23, 2007
Santa Claus Conquers the Martian
Schuyler saw Santa tonight, in what is apparently becoming a holiday tradition of going on the 23rd. Well, I'm not sure if it's actually tradition so much as "Oh shit, tomorrow's Christmas Eve!", but I sort of like doing it on the last non-holiday shopping day. I mean, after seeing Santa, what's left? I never understood all the parents who took their kids to see Santa the day after Thanksgiving. If I were a kid, I'd be afraid he was going to forget what I wanted by the time Christmas Eve actually rolled around. I mean, the man never even writes anything down. You're really going to trust some minimum wage elf to jot that down for him?
Schuyler prepared for her audience with Santa just like she did last year, although her list was shorter and weirder this go around. ("I want magic wand and roller skates." I hate to tell you, little Spaz, but Santa might just veto the skates. That idea has tragedy and the emergency room written all over it.) The wait in line wasn't as grueling as last year, thanks in large part to a balloon-artist elf (she asked for and received "monkey and banana") who also did magic, much to Schuyler's amazement. Pull a ball out of her nose and you've got her undivided attention.
This year, Santa was different from last time. He wasn't in his full-on red suit uniform, but was in his "hanging around the toy shop, throwing back some nog with the elves" outfit. Just like last year, however, Schuyler seemed to tap into some deeper well of attention from him. When she broke out her device and said "Hello Santa!", he asked me if she signed. I said that she did a little, and once they were done, he signed "thank you", to her delight. He listened intently, and his voice cracked a little when he told us sternly "You make sure this little girl gets what she wants!"
(I was thinking, "Dude, you're Santa, you're the one bringing presents, remember? Don't be outing us like that!")
Schuyler wrote out what I thought was supposed to be a list, but the whole thing was in an undecipherable Martian scribble, except for the last few words, "...for me. Love Schuyler" She brought it with her, but in the excitement of seeing Santa, she forgot about it until we were standing at the cashier's station paying. Julie gave it to the cashier elf to give to Santa. She tried to hand it to him, but he waved Schuyler back, sat her back in his lap as they looked at it together.
"Now, you go home and put this under your tree, and when I come to your house, I'll see it and remember what you asked for." She nodded, carefully folded the note and walked reluctantly away, turning to wave goodbye to him a few times.
This was only Schuyler's second visit with Santa, but like last year, it was a good one. Her visit with Santa last Christmas was so special that it made it into the book, but this year was just as good in its own way. This year, she was more confident and relaxed, a big girl who had already met The Man before. No need to be so nervous this year. She and Santa are buds now.
I have no idea how much longer she'll believe in Santa, or how much she even believes in him now. Sometimes she'll act like a pill, and when one of us hauls out the big guns ("Do you want us to call Santa and tell him what a turd you're being?"), she gets genuinely upset, so clearly he's got plenty of power in her world. I sometimes wonder if she'll be too jaded for Santa one day, but I suspect that even after she figures it out, she'll keep playing along, just for her poor father's benefit. I think she probably knows how sad I'll be when Santa's gone, and as she's shown time and again, she won't abide my sadness if she can help it. And she can usually help it.
I don't know. Perhaps Santa is Schuyler's gift to us, and not the other way around.
Schuyler prepared for her audience with Santa just like she did last year, although her list was shorter and weirder this go around. ("I want magic wand and roller skates." I hate to tell you, little Spaz, but Santa might just veto the skates. That idea has tragedy and the emergency room written all over it.) The wait in line wasn't as grueling as last year, thanks in large part to a balloon-artist elf (she asked for and received "monkey and banana") who also did magic, much to Schuyler's amazement. Pull a ball out of her nose and you've got her undivided attention.
This year, Santa was different from last time. He wasn't in his full-on red suit uniform, but was in his "hanging around the toy shop, throwing back some nog with the elves" outfit. Just like last year, however, Schuyler seemed to tap into some deeper well of attention from him. When she broke out her device and said "Hello Santa!", he asked me if she signed. I said that she did a little, and once they were done, he signed "thank you", to her delight. He listened intently, and his voice cracked a little when he told us sternly "You make sure this little girl gets what she wants!"
(I was thinking, "Dude, you're Santa, you're the one bringing presents, remember? Don't be outing us like that!")
Schuyler wrote out what I thought was supposed to be a list, but the whole thing was in an undecipherable Martian scribble, except for the last few words, "...for me. Love Schuyler" She brought it with her, but in the excitement of seeing Santa, she forgot about it until we were standing at the cashier's station paying. Julie gave it to the cashier elf to give to Santa. She tried to hand it to him, but he waved Schuyler back, sat her back in his lap as they looked at it together.
"Now, you go home and put this under your tree, and when I come to your house, I'll see it and remember what you asked for." She nodded, carefully folded the note and walked reluctantly away, turning to wave goodbye to him a few times.
This was only Schuyler's second visit with Santa, but like last year, it was a good one. Her visit with Santa last Christmas was so special that it made it into the book, but this year was just as good in its own way. This year, she was more confident and relaxed, a big girl who had already met The Man before. No need to be so nervous this year. She and Santa are buds now.
I have no idea how much longer she'll believe in Santa, or how much she even believes in him now. Sometimes she'll act like a pill, and when one of us hauls out the big guns ("Do you want us to call Santa and tell him what a turd you're being?"), she gets genuinely upset, so clearly he's got plenty of power in her world. I sometimes wonder if she'll be too jaded for Santa one day, but I suspect that even after she figures it out, she'll keep playing along, just for her poor father's benefit. I think she probably knows how sad I'll be when Santa's gone, and as she's shown time and again, she won't abide my sadness if she can help it. And she can usually help it.
I don't know. Perhaps Santa is Schuyler's gift to us, and not the other way around.
December 17, 2007
Box Days
The monster was unusually present this weekend, albeit held at bay. Schuyler participated in a caroling party with other kids who use AAC technology, and while it was a fascinating and occasionally heartbreaking experience, it also involved a lot of other people whose stories aren't mine to tell. I'll simply say that it was yet another one of those experiences with other, more broken kids where I felt despair, while Schuyler just saw an opportunity for seasonally appropriate merriment. (At one point she decided to take over and conduct the performance.) One day, I'll learn to see this grand rough world like Schuyler does, rather than in my old sad bastard way.
I recently heard from a magazine editor who wanted to do something on Schuyler's Monster for the magazine's February issue. After he got a copy of the book, he suggested something different. Rather than a standard minireview of the book itself, he wanted to do a story about us and the book, but with a twist.
He wanted to interview Schuyler, on her device, via email or instant message.
I initially hesitated, although I'm not entirely sure why. I mean, I try to insulate Schuyler from all of the book spazzing and hype, but that's perhaps a little naive, considering that she is the title character of the book, her face splashed across the cover. For better or for worse (better, I feel pretty sure), Schuyler's along for the ride on this. Furthermore, I dig this magazine, which is both a little fancy and a little shit-disturbing at the same time, and I like the executive editor, whose writing I am familiar with from his days at a now-defunct Dallas weekly alternative paper. It was an interesting idea, one that simultaneously triggered my defensive dad reflex and my curiosity. After consulting Julie and Schuyler, curiosity won out.
In the end, we opted for an interview conducted over email, partly because I wanted to be able to take time with Schuyler to make sure she understood the questions, and partly because I wasn't entirely sure how to make the Big Box of Words work with an IM client. (Incidentally, it turns out that it is stupidly easy.) I won't go into the details of the interview itself, since that's obviously for someone else's publication, but I felt like it went pretty well. Schuyler was very careful and particular in her unusually long-winded responses, and the only help she needed from me was in spelling some words she couldn't find on her device.
There was a question about her dreams, and while I'm not 100% sure she entirely understood it, I was nevertheless interested to see what she'd have to say. Schuyler's dreams have always fascinated me, mostly because of all the parts of her life that we are occasionally privy to, her dreams remain the most unreachable. She has never shared them with us in any meaningful way; I can only think of one time before now, after she was troubled by a bad dream about monsters of some kind. But even then, she didn't seem frightened, only very sad, and she wouldn't share any details.
That's how it is with Schuyler. As she gets older, some doors open up to us, and we can see parts of her world that were closed off to us before. But she can slam them closed whenever she wants, and sometimes she makes that choice, particularly when she's pissed off. She stops using her device, throws her arms in frustration, and starts jabbering in a stream of Schuylerese that is two parts Martian and one part whine. Schuyler can be a pill when she chooses to be.
Even when she's happy, though, there are doors seemingly forever closed to us. Her dreams are her own, and so are her songs. She breaks into little melodies of her own creation, with lyrics that go forever untranslated. I'm learning not to ask her about her music, as that is the fastest way to make her stop singing. When Schuyler sings, you listen and you take the part that is meant for you, the sweet and untethered melodies that flit around like moths, never landing, always moving. The lyrics we just have to live without. They are hers alone.
I recently heard from a magazine editor who wanted to do something on Schuyler's Monster for the magazine's February issue. After he got a copy of the book, he suggested something different. Rather than a standard minireview of the book itself, he wanted to do a story about us and the book, but with a twist.
He wanted to interview Schuyler, on her device, via email or instant message.
I initially hesitated, although I'm not entirely sure why. I mean, I try to insulate Schuyler from all of the book spazzing and hype, but that's perhaps a little naive, considering that she is the title character of the book, her face splashed across the cover. For better or for worse (better, I feel pretty sure), Schuyler's along for the ride on this. Furthermore, I dig this magazine, which is both a little fancy and a little shit-disturbing at the same time, and I like the executive editor, whose writing I am familiar with from his days at a now-defunct Dallas weekly alternative paper. It was an interesting idea, one that simultaneously triggered my defensive dad reflex and my curiosity. After consulting Julie and Schuyler, curiosity won out.
In the end, we opted for an interview conducted over email, partly because I wanted to be able to take time with Schuyler to make sure she understood the questions, and partly because I wasn't entirely sure how to make the Big Box of Words work with an IM client. (Incidentally, it turns out that it is stupidly easy.) I won't go into the details of the interview itself, since that's obviously for someone else's publication, but I felt like it went pretty well. Schuyler was very careful and particular in her unusually long-winded responses, and the only help she needed from me was in spelling some words she couldn't find on her device.
There was a question about her dreams, and while I'm not 100% sure she entirely understood it, I was nevertheless interested to see what she'd have to say. Schuyler's dreams have always fascinated me, mostly because of all the parts of her life that we are occasionally privy to, her dreams remain the most unreachable. She has never shared them with us in any meaningful way; I can only think of one time before now, after she was troubled by a bad dream about monsters of some kind. But even then, she didn't seem frightened, only very sad, and she wouldn't share any details.
That's how it is with Schuyler. As she gets older, some doors open up to us, and we can see parts of her world that were closed off to us before. But she can slam them closed whenever she wants, and sometimes she makes that choice, particularly when she's pissed off. She stops using her device, throws her arms in frustration, and starts jabbering in a stream of Schuylerese that is two parts Martian and one part whine. Schuyler can be a pill when she chooses to be.
Even when she's happy, though, there are doors seemingly forever closed to us. Her dreams are her own, and so are her songs. She breaks into little melodies of her own creation, with lyrics that go forever untranslated. I'm learning not to ask her about her music, as that is the fastest way to make her stop singing. When Schuyler sings, you listen and you take the part that is meant for you, the sweet and untethered melodies that flit around like moths, never landing, always moving. The lyrics we just have to live without. They are hers alone.
November 29, 2007
Also available with the kung-fu grip
Living our lives in such a public way, even before the book, has occasionally led to some interesting and unique experiences, mostly centering around Schuyler. She gets to people, she emotionally affects people out there who never meet her except through my writing, and they express that connection in a variety of artistic ways. I can't even begin to tell you just how cool that can be.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
Now, for the first time that I'm aware of, Schuyler is a doll, with a tiny little Big Box of Words. This was a total surprise -- I didn't know about it until someone sent me the link -- and one that we thought was absolutely great.
I haven't had a chance to show Schuyler that page yet. Her little head is going to explode when I do.
November 5, 2007
Does the cat-building make it science fiction?
Well, it's November and NaNoWriMo time, which explains why everyone seems to be writing about writing this month. (My favorites are the people who spend time on their blogs writing about not being able to write, or even better, not having enough time to write.) While I don't really have anything to add, I thought it might be fun to share something that was sent home by Schuyler's teacher the other day. I particularly like how she's working her real world experience into her fiction.
Because after genetically engineering a cat, nothing hits the spot like a little pizza...
Once there was a scarecrow. He went to New York with his best friend Schuyler. Schuyler and the scarecrow played outside in the sandbox. Schuyler built a doll. The scarecrow made a cat. Schuyler and the scarecrow eat a pizza.
Because after genetically engineering a cat, nothing hits the spot like a little pizza...
October 15, 2007
A Father's Journey with His Wordless Daughter
In a week, we head off to New York City, and Schuyler is getting excited. She took us shopping for a nice outfit for our St. Martin's meeting and had me add some terms to her Big Box of Words (like "sea monster", "mermaid" and "New York City"). We even stopped by the still-frightening Libby Lu for another set of the little face jewel sticker thingies so she can dazzle the big city.
I'm a little nervous about this trip, of course. Despite the positive experience I've had all along with St. Martin's Press, I still worry about making an ass out of myself. It's a silly fear for a number of reasons, not the least of which is that they already read my book, which is full of stories that don't necessarily make me look like the nicest, smartest or most emotionally stable person in the world, and their response was "Let's publish this, by golly!" They already know the embarrassing parts.
I also worry about dropping the ball and losing Schuyler on the streets of New York. This is also sort of silly since anyone who has ever spent time with the two of us can tell you that I am a fussy and twitchy father when I am flying as solo parent with Schuyler. When Julie is there, we spilt the freaking out duties, but Julie is entering her busy season at the book store (where, by the way, she has gotten permission to hold my very first appearance, which feels exactly right) an won't be with us. It's just me and Schuyler and all my worries.
When she was a baby, I had an irrational fear of taking her on the second floor of a mall, after all. I was convinced that some lunatic was going to run up to her stroller, grab her and toss her over the railing. I also thought big dogs would run up in the park and run off with her, wiggling sadly in their big slobbery jaws. I don't expect any New York misadventure to catch me off-guard, although just typing that sent a little wave of anxiety through me, heightening the spaz factor up another notch or two.
For Schuyler, this trip is about building memories for her. I have no idea how she'll feel about this book when she's older, although from what I know of her personality so far, I suspect she'll be more interested in the possibilities of helping other people than in whatever privacy issues might arise from the book. She's excited about it now; ask her about the book, and she'll either refer to it on her BBoW as "my monster" or "schuylers monster", which is especially fun since I don't believe I've ever referred to it by name to her. She's picked that up on her own.
But no matter how she feels about it down the road (perhaps she'll write the sequel, Schuyler's Dumbass: The Stuff My Father Got Wrong), at the very least, she will one day be able to look back and remember that her father's book gave her the opportunity, however brief, to step out of her monster's shadow and walk the streets of Manhattan like she owned the place. She'll have memories of the museums and the energy of the city and seeing the site of King Kong's last stand. She'll be able to remember going into the Flatiron Building to talk to fancy pants publishing folks about HER book like the literary figure she is.
She's earned this. Well, I think we both have, really.
I'm a little nervous about this trip, of course. Despite the positive experience I've had all along with St. Martin's Press, I still worry about making an ass out of myself. It's a silly fear for a number of reasons, not the least of which is that they already read my book, which is full of stories that don't necessarily make me look like the nicest, smartest or most emotionally stable person in the world, and their response was "Let's publish this, by golly!" They already know the embarrassing parts.
I also worry about dropping the ball and losing Schuyler on the streets of New York. This is also sort of silly since anyone who has ever spent time with the two of us can tell you that I am a fussy and twitchy father when I am flying as solo parent with Schuyler. When Julie is there, we spilt the freaking out duties, but Julie is entering her busy season at the book store (where, by the way, she has gotten permission to hold my very first appearance, which feels exactly right) an won't be with us. It's just me and Schuyler and all my worries.
When she was a baby, I had an irrational fear of taking her on the second floor of a mall, after all. I was convinced that some lunatic was going to run up to her stroller, grab her and toss her over the railing. I also thought big dogs would run up in the park and run off with her, wiggling sadly in their big slobbery jaws. I don't expect any New York misadventure to catch me off-guard, although just typing that sent a little wave of anxiety through me, heightening the spaz factor up another notch or two.
For Schuyler, this trip is about building memories for her. I have no idea how she'll feel about this book when she's older, although from what I know of her personality so far, I suspect she'll be more interested in the possibilities of helping other people than in whatever privacy issues might arise from the book. She's excited about it now; ask her about the book, and she'll either refer to it on her BBoW as "my monster" or "schuylers monster", which is especially fun since I don't believe I've ever referred to it by name to her. She's picked that up on her own.
But no matter how she feels about it down the road (perhaps she'll write the sequel, Schuyler's Dumbass: The Stuff My Father Got Wrong), at the very least, she will one day be able to look back and remember that her father's book gave her the opportunity, however brief, to step out of her monster's shadow and walk the streets of Manhattan like she owned the place. She'll have memories of the museums and the energy of the city and seeing the site of King Kong's last stand. She'll be able to remember going into the Flatiron Building to talk to fancy pants publishing folks about HER book like the literary figure she is.
She's earned this. Well, I think we both have, really.
October 10, 2007
My voice is my power...
This was put together by a tenacious group of teenagers who are much more significantly impaired than Schuyler but who use similar speech devices.
Produced by an AAC advocacy group in the UK called 1 Voice.
September 8, 2007
My Beloved Cyborg and Me
When Schuyler gets handed school projects that are beyond the scope of her monster, we roll up our sleeves and get creative. This weekend, she has to make a giant poster for her turn as the Second Grade Star Student of the Week, although it's unclear if she's actually the start student or if this is just getting the poster ready early. Apparently every kid gets a turn, which is probably as it should be in second grade. Let every little monkey get a taste of celebrity and power.
Schuyler functions pretty well in a mainstream setting, and she'll continue to improve as she goes alone. But like many of her projects, the big poster presented some challenges. Schuyler's handwriting is still very hard to read, for example, and she doesn't deal well with small spaces in which to write. We've been having her write out as much of her homework as possible, as opposed to printing it off the Big Box of Words like we did last year, but for her poster, we decided to use the computer and help her create something with a little zazz.
I know some people probably would disagree with helping her out with a project like this, as if we were ashamed of her monster-fogged work. I guess we felt that Schuyler's poster should reflect the girl behind the monster, rather than seeing all her interests and loves obscured by the Difference. Her artwork is good stuff, and her ideas of what she wanted to present were very cool and, yes, very Schuyler. (She drew King Kong, of course.) But since her writing is a problem and doesn't really keep up with the crazy race going on inside her head, we decided to do a few items for the poster as a family, and in doing so, bring some computer power into play.
Which was how Schuyler and I came to create a real artistic collaboration, a little comic book-style page telling about her new puppy, Max. She wrote the text and helped choose the photos, and I did the formatting for her, using basic Apple "drag this here and type this here and suddenly everyone thinks you know what you're doing" software.
(I was already thinking of comic book formatting because I'd been tidying up my old site, reformatting my old "pet blog" parody site, Flappo!, the night before. I know Flappo! was crude, and since the pet pages trend mercifully died out pretty soon after, the joke of vile, rude pets instead of cute, fluffy ones is sort of dated. Still, I have to admit, of all the pre-diagnosis things I ever did, Flappo! was maybe my favorite. It was my first attempt at humor after September 11th, although I'm not sure anyone else thought it was actually funny. Still, I sort of miss the guy who was writing that sort of thing, back before I became all Twenty-four Hour Tragedy Dad.)
When our Max page was done, we all just sort of looked at it and said, "Wow, maybe it looks TOO good." We didn't want it to appear that Schuyler just sat around playing with her dinosaurs while mom and dad obsessed over having the Absolutely Most Perfect Poster of all the Plano Kids, by golly. She served as both writer and director, after all.
But for Schuyler, with so much of her future waiting for her in the world of computers that will help her speak and create, even more so than most kids, perhaps it was fitting that she once again was able to compensate for her monster by electronic means. If Schuyler's going to have to engage in these compensatory measures to get through school, I think it's only fair that she be able to do so with style.
Schuyler's future looks great, so long as there's electricity. If civilization collapses and we all revert back to primitive life, however, I suspect she'll still be the kid holding the conch shell.
Schuyler functions pretty well in a mainstream setting, and she'll continue to improve as she goes alone. But like many of her projects, the big poster presented some challenges. Schuyler's handwriting is still very hard to read, for example, and she doesn't deal well with small spaces in which to write. We've been having her write out as much of her homework as possible, as opposed to printing it off the Big Box of Words like we did last year, but for her poster, we decided to use the computer and help her create something with a little zazz.
I know some people probably would disagree with helping her out with a project like this, as if we were ashamed of her monster-fogged work. I guess we felt that Schuyler's poster should reflect the girl behind the monster, rather than seeing all her interests and loves obscured by the Difference. Her artwork is good stuff, and her ideas of what she wanted to present were very cool and, yes, very Schuyler. (She drew King Kong, of course.) But since her writing is a problem and doesn't really keep up with the crazy race going on inside her head, we decided to do a few items for the poster as a family, and in doing so, bring some computer power into play.
Which was how Schuyler and I came to create a real artistic collaboration, a little comic book-style page telling about her new puppy, Max. She wrote the text and helped choose the photos, and I did the formatting for her, using basic Apple "drag this here and type this here and suddenly everyone thinks you know what you're doing" software.
(I was already thinking of comic book formatting because I'd been tidying up my old site, reformatting my old "pet blog" parody site, Flappo!, the night before. I know Flappo! was crude, and since the pet pages trend mercifully died out pretty soon after, the joke of vile, rude pets instead of cute, fluffy ones is sort of dated. Still, I have to admit, of all the pre-diagnosis things I ever did, Flappo! was maybe my favorite. It was my first attempt at humor after September 11th, although I'm not sure anyone else thought it was actually funny. Still, I sort of miss the guy who was writing that sort of thing, back before I became all Twenty-four Hour Tragedy Dad.)
When our Max page was done, we all just sort of looked at it and said, "Wow, maybe it looks TOO good." We didn't want it to appear that Schuyler just sat around playing with her dinosaurs while mom and dad obsessed over having the Absolutely Most Perfect Poster of all the Plano Kids, by golly. She served as both writer and director, after all.
But for Schuyler, with so much of her future waiting for her in the world of computers that will help her speak and create, even more so than most kids, perhaps it was fitting that she once again was able to compensate for her monster by electronic means. If Schuyler's going to have to engage in these compensatory measures to get through school, I think it's only fair that she be able to do so with style.
Schuyler's future looks great, so long as there's electricity. If civilization collapses and we all revert back to primitive life, however, I suspect she'll still be the kid holding the conch shell.
August 28, 2007
Homework
Schuyler started school this week. Second grade, believe it or not, which is the appropriate grade level for a neurotypical kid her age. Last week, we visited her school and saw all her teachers and classmates in her Box Class. (Schuyler strutted into the room like a Roman general parading in triumph down the Via Appia.) I also met her new mainstream teacher and saw her little desk in her regular second grade class, the one where she spends a good chunk of every day. Neurotypical kids greeted her excitedly, and if you blinked, you might miss her monster altogether.
We sat down and did her homework just now, and once again I was struck by how far she's come. She learns quickly, although it's still hard to know how much she can and can't read. (Imagine for a moment how you might determine reading ability and comprehension with a non-verbal kid, and you'll quickly see the gulf we deal with every day.) It's clear, however, that she is reading at some level, and learning more every day.
Here's an example of how it works. The sheet we're working on tonight asks some basic questions about likes and experiences and such. I read the question to Schuyler.
"I would like to visit _____."
She answers on the Big Box of Words.
"Jungle."
"I would like to visit this place because _____"
"I want to see animals."
She then writes the answer in the blank, referring to the BBoW screen for spelling if she needs to. Her handwriting is unclear (it probably always will be, as her polymicrogyria seriously hampers her fine motor skills), but it's getting much better. Since she has a new teacher, I transcribe her answers in small letters underneath her writing.
It's pretty basic stuff, no different than any other second grader's homework anywhere. But for us, it's a gift. Not from God, because fuck that guy. It's a gift from Schuyler, and the Big Box of Words, and all the people (including many of you) who have worked so hard to get her to this point.
But mostly Schuyler.
We sat down and did her homework just now, and once again I was struck by how far she's come. She learns quickly, although it's still hard to know how much she can and can't read. (Imagine for a moment how you might determine reading ability and comprehension with a non-verbal kid, and you'll quickly see the gulf we deal with every day.) It's clear, however, that she is reading at some level, and learning more every day.
Here's an example of how it works. The sheet we're working on tonight asks some basic questions about likes and experiences and such. I read the question to Schuyler.
"I would like to visit _____."
She answers on the Big Box of Words.
"Jungle."
"I would like to visit this place because _____"
"I want to see animals."
She then writes the answer in the blank, referring to the BBoW screen for spelling if she needs to. Her handwriting is unclear (it probably always will be, as her polymicrogyria seriously hampers her fine motor skills), but it's getting much better. Since she has a new teacher, I transcribe her answers in small letters underneath her writing.
It's pretty basic stuff, no different than any other second grader's homework anywhere. But for us, it's a gift. Not from God, because fuck that guy. It's a gift from Schuyler, and the Big Box of Words, and all the people (including many of you) who have worked so hard to get her to this point.
But mostly Schuyler.
July 25, 2007
Octopus Love
A few weeks ago, Schuyler received a gift from a reader (with no way to get in touch with them; if this is you, I have a thank you note ready to send to you), an octopus, to go with the rest of her little Schleich animals, which she has been collecting for a while. We like that they're not expensive, they're realistic and introduce her to the natural world, and they don't look like prostitutes or shoot lasers or advertise television shows. She treats them with reverence and takes care of them like they are real.
Schuyler doesn't just collect them haphazardly, though. She builds little families, and beyond that, a community. She picks them out in little family groups if possible, and when she brings them home, she put them in a little line and introduces them to the rest of her animals. It's a complicated process, and I haven't quite figured out all the social dynamics.
When Schuyler received her octopus, she named it Henry for some unfathomable reason but almost certainly related to a penguin character on Oswald, one of the few octopus references in her world. (We're probably lucky she didn't name him "The Kraken".) Schuyler wasn't immediately sure what to do with this new creature. He's the only sea creature in the collection, so he has no obvious colleagues. He tended to hang out with the dinosaurs, but it wasn't a good fit and Schuyler seemed to realize that.
Over the weekend, we were in a hobby store looking for frames, and Schuyler quickly found a display of Schleich-wannabe animals. Earlier, she had surprised us with a statement on her Big Box of Words, totally at random. "Alligator eat rabbit." Now she found an alligator and had me look for a rabbit so she could show me how this brutal natural act would actually go down.
I found the rabbit, and she treated me to a dramatic interpretation. Yikes.
A few minutes later, as I was looking at frames a few feet away, Schuyler came running up to me excitedly. She held out an octopus, smaller than Henry but otherwise very similar.
"What do you have there?" I asked.
She pointed as if to indicate some place far away and signed "boy", then wiggled her fingers in a very octopus way. She then held up this new octopus and signed "girl" and "friend".
"ER-ehn!" she said.
"Wait a minute," I said. "Are you saying you want to get a girlfriend for your octopus?"
"Yeah," she said and then jumped happily.
I can only assume that Henry is in a happier state of being now, thanks to his octopus pimp hookup.
Schuyler doesn't just collect them haphazardly, though. She builds little families, and beyond that, a community. She picks them out in little family groups if possible, and when she brings them home, she put them in a little line and introduces them to the rest of her animals. It's a complicated process, and I haven't quite figured out all the social dynamics.
When Schuyler received her octopus, she named it Henry for some unfathomable reason but almost certainly related to a penguin character on Oswald, one of the few octopus references in her world. (We're probably lucky she didn't name him "The Kraken".) Schuyler wasn't immediately sure what to do with this new creature. He's the only sea creature in the collection, so he has no obvious colleagues. He tended to hang out with the dinosaurs, but it wasn't a good fit and Schuyler seemed to realize that.
Over the weekend, we were in a hobby store looking for frames, and Schuyler quickly found a display of Schleich-wannabe animals. Earlier, she had surprised us with a statement on her Big Box of Words, totally at random. "Alligator eat rabbit." Now she found an alligator and had me look for a rabbit so she could show me how this brutal natural act would actually go down.
I found the rabbit, and she treated me to a dramatic interpretation. Yikes.
A few minutes later, as I was looking at frames a few feet away, Schuyler came running up to me excitedly. She held out an octopus, smaller than Henry but otherwise very similar.
"What do you have there?" I asked.
She pointed as if to indicate some place far away and signed "boy", then wiggled her fingers in a very octopus way. She then held up this new octopus and signed "girl" and "friend".
"ER-ehn!" she said.
"Wait a minute," I said. "Are you saying you want to get a girlfriend for your octopus?"
"Yeah," she said and then jumped happily.
I can only assume that Henry is in a happier state of being now, thanks to his octopus pimp hookup.
June 6, 2007
Nostalgia, and not the good kind
I'm going to post this, and then I'm going to probably clam up about the situation until it resolves itself.
Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.
The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.
Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.
Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.
This gets fixed tomorrow, one way or another.
Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.
The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.
Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.
Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.
This gets fixed tomorrow, one way or another.
June 5, 2007
Rough transition
I wish I could report that Schuyler's making an awesome transition to her new summer program, but the truth is, she had a bad day.
Schuyler has an incident like this about once a year, which is probably not too bad for a seven year-old. Today she got frustrated and kicked a kid, and then one of the program workers as well. I'm still not sure we've gotten the whole story, but she admitted that she kicked them on her device. She said the boy hurt her first, but she didn't have an explanation for kicking the staffer. She shrugged miserably when we asked her why she did it, because I don't think she understands having a temper, or how to respond to frustration.
It's a particular difficulty with nonverbal kids, especially when they are interacting with new people who don't understand how to communicate with her. That doesn't excuse her behavior, but this sort of thing doesn't just occur in a vacuum. The Big Box of Words requires patience from everyone, since it takes her some time to respond to questions or express what she's feeling. It's only the second day, but I'm getting the feeling that her summer program staff just doesn't quite get it yet.
Her classes have gone great, she got a glowing report today from her teacher. I was a little surprised since she's in class for four straight hours in the morning, which is a lot for a seven year-old. It would be a lot for me, come to think of it. But her class is fine. It's the after school program that's giving her fits, and we don't yet understand why.
One clue may have been the fact that they said she wouldn't use her device. That sent up a red flag because in the past, she's only balked at using the device when she was made to feel weird about using it, or when it was made unavailable to her. That's when she gets frustrated, when she can't be understood. She's in a situation now with people who can't understand any of her moonman words or her signs and who might not be encouraging her to use her device. That doesn't leave her with much, and that's when she typically feels trapped and lashes out.
Well, it's only the second day. She promised to apologize on her device to the people she kicked and to be the very best little girl she can be tomorrow, and I believe that she'll do just that. My friend Tracy wrote once that Schuyler's sorrow at disappointing me was a powerful thing, and Julie said the same thing tonight. I don't know if it's a "Daddy's little girl" thing or what, but it's a little heartbreaking.
After our long talk and mutual agreement on her punishment this evening and what would happen tomorrow if things don't improve, she looked at me sadly and started punching buttons on her device.
"I love you," she said.
"I love you, too, Schuyler," I said. "I love you so, so much."
She smiled for the first time all evening and climbed out of her chair. She came over and put her arms around my neck and hugged me as hard as she's ever hugged me, and for a long time.
All the people out there who feel like we need to be disciplining her physically (and I'm sure I'll hear from them again like I did last summer; maybe they'll pronounce her name correctly this time when they call me on the phone), they have no idea.
I'll never raise a hand to her, ever. I don't think either of us would be able to bear it.
Schuyler has an incident like this about once a year, which is probably not too bad for a seven year-old. Today she got frustrated and kicked a kid, and then one of the program workers as well. I'm still not sure we've gotten the whole story, but she admitted that she kicked them on her device. She said the boy hurt her first, but she didn't have an explanation for kicking the staffer. She shrugged miserably when we asked her why she did it, because I don't think she understands having a temper, or how to respond to frustration.
It's a particular difficulty with nonverbal kids, especially when they are interacting with new people who don't understand how to communicate with her. That doesn't excuse her behavior, but this sort of thing doesn't just occur in a vacuum. The Big Box of Words requires patience from everyone, since it takes her some time to respond to questions or express what she's feeling. It's only the second day, but I'm getting the feeling that her summer program staff just doesn't quite get it yet.
Her classes have gone great, she got a glowing report today from her teacher. I was a little surprised since she's in class for four straight hours in the morning, which is a lot for a seven year-old. It would be a lot for me, come to think of it. But her class is fine. It's the after school program that's giving her fits, and we don't yet understand why.
One clue may have been the fact that they said she wouldn't use her device. That sent up a red flag because in the past, she's only balked at using the device when she was made to feel weird about using it, or when it was made unavailable to her. That's when she gets frustrated, when she can't be understood. She's in a situation now with people who can't understand any of her moonman words or her signs and who might not be encouraging her to use her device. That doesn't leave her with much, and that's when she typically feels trapped and lashes out.
Well, it's only the second day. She promised to apologize on her device to the people she kicked and to be the very best little girl she can be tomorrow, and I believe that she'll do just that. My friend Tracy wrote once that Schuyler's sorrow at disappointing me was a powerful thing, and Julie said the same thing tonight. I don't know if it's a "Daddy's little girl" thing or what, but it's a little heartbreaking.
After our long talk and mutual agreement on her punishment this evening and what would happen tomorrow if things don't improve, she looked at me sadly and started punching buttons on her device.
"I love you," she said.
"I love you, too, Schuyler," I said. "I love you so, so much."
She smiled for the first time all evening and climbed out of her chair. She came over and put her arms around my neck and hugged me as hard as she's ever hugged me, and for a long time.
All the people out there who feel like we need to be disciplining her physically (and I'm sure I'll hear from them again like I did last summer; maybe they'll pronounce her name correctly this time when they call me on the phone), they have no idea.
I'll never raise a hand to her, ever. I don't think either of us would be able to bear it.
May 15, 2007
Just a little FYI
An entry I wrote recently about Schuyler and her device is being featured in this month's Parents' Corner column over the AAC Institute site. The AAC Institute is a not-for-profit advocacy group for augmentative and alternative communication (AAC) users. AAC includes a wide range of technologies, including the Big Box of Words.
I'm really happy that Robin Hurd at the AAC Institute asked me to contribute. She's a well-known advocate for those with developmental disabilities and a parent of twins a little older than Schuyler who both use communication devices. She knows her stuff.
(Edited to add: There's a good interview with Robin Hurd at The Autism Life where she explains some of the concepts behind AAC.)
This kind of advocacy for a cause that is responsible for Schuyler's second chance at a full life is exactly the sort of thing I hope to accomplish more of when the book comes out. All the fame and wealth and hot young English major groupies are just the icing on the cake.
I'm really happy that Robin Hurd at the AAC Institute asked me to contribute. She's a well-known advocate for those with developmental disabilities and a parent of twins a little older than Schuyler who both use communication devices. She knows her stuff.
(Edited to add: There's a good interview with Robin Hurd at The Autism Life where she explains some of the concepts behind AAC.)
This kind of advocacy for a cause that is responsible for Schuyler's second chance at a full life is exactly the sort of thing I hope to accomplish more of when the book comes out. All the fame and wealth and hot young English major groupies are just the icing on the cake.
May 8, 2007
Monster Gallery
Schuyler had a pretty good day.
She woke up in a good mood and insisted on taking photos of her bus when it pulled up. She took pictures of me, too, as I took pictures of her, and the ridiculousness of it made her laugh. When she climbed aboard the bus, she waved excitedly and blew her kisses to me, unaware of the tiny piece of me that died like it does every time her bus pulls away.
We met with two of her teachers today, the miracle worker who runs her box class and the mainstream first grade teacher who loves our daughter even though I think she's a little frightened by Schuyler's independent streak. She told us today, in the midst of reporting Schuyler's progress, that occasionally "she talks too much in class". Julie actually laughed out loud.
The general feeling of her teachers seemed to be that Schuyler is doing very well in some areas, lags behind in some others (she apparently has inherited a gene from me, the one that both hates and fears math), and can either reach for academic greatness or pull amusing but ultimately useless stunts, depending entirely on her mood.
(These include correctly writing, in her careful, jagged handwriting, the numbers up to 29 before getting off track for a few lines and then simply drawing little squiggles in every box, right up to the last one, where she wrote "100". Or the science question, in which she answered the question "What is the natural resource that covers over 70% of the earth's surface and is required by all living things?", not with the obvious junk science answer, "water", but rather that more controversial scientific theory, "ballet class".)
For the most part, however, she appears to balance that occasional lapse with genuine, true school-nerd enthusiasm. She raises her hand in class, whether or not she knows the answer or has even heard the question yet. Sure, I suppose she could simply be turning into a little kissass, but I think the truth is that she's happy to have a voice of sorts and is desperate to participate in the world around her. She's become excited about her Big Box of Words again, thanks to her ongoing transition to the higher level, and she's starting to show her classmates how to use it on the 84-key setting. Her teachers say she's doing well in school, despite her monster, and she'll be moving on to second grade next fall.
I worry about Schuyler, about the uphill struggle she faces in trying to keep up with the rest of the kids in spite of the huge disadvantage that she has with the BBoW. And let's be clear; it is a remarkable tool for her, it has given her a way to communicate that has changed her life and unlocked a lot of doors for her, but it is also a maddeningly slow way to speak, and that is going to make it very hard for her to function in class. There are time benchmarks that she is supposed to be able to meet according to state guidelines, and they don't lend themselves to augmentative communication. But there are adults who do it, and Schuyler will, too.
I also worry about her social development, particularly how she'll be accepted by her peers. But school seems to be a haven for her in that regard; the neurotypical kids love her and argue over who is going to help her in class. She may still be the equivalent to E.T. to most of them, but we'll take it for now. Perhaps my expectations about mean kids will be proven wrong; they have been so far, I must admit. Grown-ups are often another story, but she doesn't appear to care too much for adult acceptance. We're the dinosaurs. Mean, old and doomed to extinction.
We saw her briefly when we went to the classroom to get some paperwork taken care of, and she was neither embarrassed nor clingy. She said her loud hellos, gave her big, Sumo-style hugs and then went back to her social circle, bragging about how her dad (the Hero of Inappropriate Movie Choices) took her to see Spider-man over the weekend.
When she got out of school, we gave Schuyler a surprise, a hand-crafted little monster that was made for her by an artistic reader. She loved it, playing with it and talking to it all the way home. She kept asking us for its name, and Julie suggested "Paisley", for obvious reasons. Schuyler liked that name, so Monster Paisley was born.
When we got home, I wanted to take a photo of it to put on the book site, and Schuyler eagerly helped. I had her gather the monsters that she'd been given as gifts over the past year or two, and as I took their photo, she kept bringing in even more monsters (along with Jasper, who gets to do whatever he wants, thanks to his role as Unofficial Big Brother).
Schuyler wanted a monster family portrait.
I've taken a lot of portraits, but this one was my favorite so far.
So it goes.
April 30, 2007
Frustration tableau
I know it seems that in general, I watch Schuyler like a hawk, and generally that's true. I don't think I'm an oppressive presence in her life, but I keep a close eye on her, enough to keep her out of traffic and off that wicked crack cocaine, anyway.
But on an ideal playground that is designed with only one point of entry and exit, which is really the only kind we typically take her to, it's possible to relax a little and let her run around and play with some measure of independence. As long as I'm aware of who's around and place myself near the single entry point, I can generally let Schuyler do her thing with a minimal amount of creepy dad surveillance.
At the park on Sunday, I'd seen an older woman watching over her two grandsons, and I'd been aware of her twitchy machinations in the boys' playing. She was constantly jumping up and running onto the play area, breaking up whatever little grabby interactions her poor grandsons found themselves in. They seemed embarrassed by her interference, but they took it without much more than token resistance.
I should have seen it coming, I suppose.
I'd been sitting and reading for a while before I heard Grandma going off on someone again. When I looked up, of course it was Schuyler who was being berated. As I hopped up and hurried over, BBoW in hand, she stood silently as Grandma barked at her, her lower lip sticking out and her medic alert tag in her hand, extended but ignored.
"When a grownup tells you something, you need to show respect and answer!" I heard Grandma saying as I walked up to them. Schuyler let go of her tag and stomped her foot in frustration, which of course just made things worse. Grandma started to wind up again, even as her grandson protested that it wasn't a big deal. He was clearly humiliated by his grandmother, protecting him from a little mute girl.
"Whoa whoa whoa whoa!" I said, putting my hands on Schuyler's shoulders. "What's going on here?"
Before Grandma could say anything, Schuyler turned and angrily started giving her side, gesturing sharply and jabbering away in Moonmanese. When she heard this, Grandma's eyes grew large. I think it was only then that she realized that Schuyler was different.
"Go play, we'll talk in a little bit, okay?" I said to Schuyler. She looked at me warily for a moment and then darted back to the playground, the moment seemingly forgotten. Grandma looked at her as she ran off, confused.
"She's got a neurological condition," I said. "It keeps her from speaking. The tag she wears around her neck explains it all, that's why she was trying to show it to you."
"I didn't bring my reading glasses," Grandma said. "I didn't understand what she was trying to say."
We talked briefly. She said that Schuyler was pulling on her grandson as they got off the slide, and when she tried to talk to her about it, Schuyler sounded like she was mocking her with nonsensical babbling.
"Look," I said finally. "If you have any more problems, just come tell me, okay?" I walked away, saddened by the whole exchange. Schuyler had tried to explain, she'd done everything right, and still things had gone down badly.
I thought she'd blown it off, but about ten minutes later Schuyler came and sat beside me, sighing dramatically. (I have no idea who taught her to do that, but it's both heartbreaking and funny when she does it.) I pulled up the BBoW for her.
"What happened, Schuyler?" I asked. "What was she so angry about?"
"Me push him." When Schuyler gets upset, she tends to let the rules of language and structure fly out the window. She sounds like Robot Tarzan.
She didn't like that answer, however. "Me no push." She thought for a moment and then mimed a pulling gesture, her fists moving to her chest.
"You pulled him?" I asked. She nodded.
"Me sorry." She shrugged sadly and signed "play".
"You were just playing?" I asked. She nodded. "That's okay, you're fine. I know you didn't mean to do anything wrong. You just have to be gentle with people you don't know, okay?"
We sat silently, my arm around her. She leaned into me, and I could tell that she was frustrated by the whole experience. I gave her a few minutes and then leaned down and spoke the words that I use to bring her out of a funk, the ones that never fail, ever.
"Hey, Schuyler," I said. "Whatever you do, don't laugh."
She cracked up, reaching up and poking me on the nose. I told her even more sternly not to laugh, which of course busted her up more, and just like that, it was over.
We watched the grandsons play for a while longer, Schuyler seemingly content to just sit with her old man and be quiet. Before long, Grandma jumped up again and scurried out onto the playground.
"She was really mad, wasn't she?" I asked. Schuyler nodded and punched a few buttons on the BBoW.
"She angry."
Then she smirked and typed more.
"She dinosaur."
And with a laugh, she made little T-rex claws and said, "Raar!"
Was she making fun of the old woman for being mean, or being old? Either way, it was genuinely funny.
But on an ideal playground that is designed with only one point of entry and exit, which is really the only kind we typically take her to, it's possible to relax a little and let her run around and play with some measure of independence. As long as I'm aware of who's around and place myself near the single entry point, I can generally let Schuyler do her thing with a minimal amount of creepy dad surveillance.
At the park on Sunday, I'd seen an older woman watching over her two grandsons, and I'd been aware of her twitchy machinations in the boys' playing. She was constantly jumping up and running onto the play area, breaking up whatever little grabby interactions her poor grandsons found themselves in. They seemed embarrassed by her interference, but they took it without much more than token resistance.
I should have seen it coming, I suppose.
I'd been sitting and reading for a while before I heard Grandma going off on someone again. When I looked up, of course it was Schuyler who was being berated. As I hopped up and hurried over, BBoW in hand, she stood silently as Grandma barked at her, her lower lip sticking out and her medic alert tag in her hand, extended but ignored.
"When a grownup tells you something, you need to show respect and answer!" I heard Grandma saying as I walked up to them. Schuyler let go of her tag and stomped her foot in frustration, which of course just made things worse. Grandma started to wind up again, even as her grandson protested that it wasn't a big deal. He was clearly humiliated by his grandmother, protecting him from a little mute girl.
"Whoa whoa whoa whoa!" I said, putting my hands on Schuyler's shoulders. "What's going on here?"
Before Grandma could say anything, Schuyler turned and angrily started giving her side, gesturing sharply and jabbering away in Moonmanese. When she heard this, Grandma's eyes grew large. I think it was only then that she realized that Schuyler was different.
"Go play, we'll talk in a little bit, okay?" I said to Schuyler. She looked at me warily for a moment and then darted back to the playground, the moment seemingly forgotten. Grandma looked at her as she ran off, confused.
"She's got a neurological condition," I said. "It keeps her from speaking. The tag she wears around her neck explains it all, that's why she was trying to show it to you."
"I didn't bring my reading glasses," Grandma said. "I didn't understand what she was trying to say."
We talked briefly. She said that Schuyler was pulling on her grandson as they got off the slide, and when she tried to talk to her about it, Schuyler sounded like she was mocking her with nonsensical babbling.
"Look," I said finally. "If you have any more problems, just come tell me, okay?" I walked away, saddened by the whole exchange. Schuyler had tried to explain, she'd done everything right, and still things had gone down badly.
I thought she'd blown it off, but about ten minutes later Schuyler came and sat beside me, sighing dramatically. (I have no idea who taught her to do that, but it's both heartbreaking and funny when she does it.) I pulled up the BBoW for her.
"What happened, Schuyler?" I asked. "What was she so angry about?"
"Me push him." When Schuyler gets upset, she tends to let the rules of language and structure fly out the window. She sounds like Robot Tarzan.
She didn't like that answer, however. "Me no push." She thought for a moment and then mimed a pulling gesture, her fists moving to her chest.
"You pulled him?" I asked. She nodded.
"Me sorry." She shrugged sadly and signed "play".
"You were just playing?" I asked. She nodded. "That's okay, you're fine. I know you didn't mean to do anything wrong. You just have to be gentle with people you don't know, okay?"
We sat silently, my arm around her. She leaned into me, and I could tell that she was frustrated by the whole experience. I gave her a few minutes and then leaned down and spoke the words that I use to bring her out of a funk, the ones that never fail, ever.
"Hey, Schuyler," I said. "Whatever you do, don't laugh."
She cracked up, reaching up and poking me on the nose. I told her even more sternly not to laugh, which of course busted her up more, and just like that, it was over.
We watched the grandsons play for a while longer, Schuyler seemingly content to just sit with her old man and be quiet. Before long, Grandma jumped up again and scurried out onto the playground.
"She was really mad, wasn't she?" I asked. Schuyler nodded and punched a few buttons on the BBoW.
"She angry."
Then she smirked and typed more.
"She dinosaur."
And with a laugh, she made little T-rex claws and said, "Raar!"
Was she making fun of the old woman for being mean, or being old? Either way, it was genuinely funny.
April 28, 2007
Screw Holland, revisited
This is Schuyler.
She is holding this week's spelling test. The words printed on the page are hers, from her device as she took the quiz.
Aside from a soccer ball sticker and a "Toadally Awesome!" stamp, it has no other markings on it.
That's because once again, she received a perfect score.
This is Schuyler. Two years ago, we were told that she was not intellectually capable of using this AAC device, the Big Box of Words; it was deemed, in the school district's final report before she actually acquired the device, to be "educationally unnecessary".
This is Schuyler. Two years ago, and also another two years before that, we were told that her future lay in general special education classes. We were informed that she was most likely suffering from some level of mental retardation and would likely remain in the care of special education until the day she was old enough to become Our Problem rather than Their Problem.
This is Schuyler. She is learning to use the BBoW on its highest setting, its most advanced vocabulary. She's already better at it than we are. She likes to show off on it and is already embracing the new vocabulary possibilities. Also, it has more dinosaurs.
There's a word that is forbidden in this home. It's a word that sounds very kind and nurturing, like something you might hear on Sesame Street, a word that spawned the Holland thing. We've been handed this word over and over again, and we reject it, completely. The word is a cage, plain and simple, and it's a cage we'd be putting Schuyler into if we embraced it.
ACCEPTANCE.
We don't accept a thing, because Schuyler doesn't. She never wants comfort or pity or acceptance. She has things to say, and she wants to say them. She wants to live a life as close as she can to the ones you and I live, not as a "special little champ" or "perfect just the way she is" or whatfucking ever, but as a punky, funny, smart and troublemaking little girl. She is Chaos in Chuck Taylors. And if you get in her way, she'll knock you over, because she's lost enough time and she knows it. She's flawed, more than some but not so much as others, and she knows that, too, and she doesn't shed a tear about it. While I worry and get sad, she rolls up her sleeves and gets to work.
Acceptance wouldn't be for her. It would be for us, for our fears of failure. I can't speak for any other parents out there, of children who are broken or exceptional or shy or hyperactive or just plain weird or whatever. But for myself, I was blessed from the very beginning because while I had a great deal of fear, Schuyler had none. She has none today.
And she has no use for Holland, either.
She is holding this week's spelling test. The words printed on the page are hers, from her device as she took the quiz.
Aside from a soccer ball sticker and a "Toadally Awesome!" stamp, it has no other markings on it.
That's because once again, she received a perfect score.
This is Schuyler. Two years ago, we were told that she was not intellectually capable of using this AAC device, the Big Box of Words; it was deemed, in the school district's final report before she actually acquired the device, to be "educationally unnecessary".
This is Schuyler. Two years ago, and also another two years before that, we were told that her future lay in general special education classes. We were informed that she was most likely suffering from some level of mental retardation and would likely remain in the care of special education until the day she was old enough to become Our Problem rather than Their Problem.
This is Schuyler. She is learning to use the BBoW on its highest setting, its most advanced vocabulary. She's already better at it than we are. She likes to show off on it and is already embracing the new vocabulary possibilities. Also, it has more dinosaurs.
There's a word that is forbidden in this home. It's a word that sounds very kind and nurturing, like something you might hear on Sesame Street, a word that spawned the Holland thing. We've been handed this word over and over again, and we reject it, completely. The word is a cage, plain and simple, and it's a cage we'd be putting Schuyler into if we embraced it.
ACCEPTANCE.
We don't accept a thing, because Schuyler doesn't. She never wants comfort or pity or acceptance. She has things to say, and she wants to say them. She wants to live a life as close as she can to the ones you and I live, not as a "special little champ" or "perfect just the way she is" or whatfucking ever, but as a punky, funny, smart and troublemaking little girl. She is Chaos in Chuck Taylors. And if you get in her way, she'll knock you over, because she's lost enough time and she knows it. She's flawed, more than some but not so much as others, and she knows that, too, and she doesn't shed a tear about it. While I worry and get sad, she rolls up her sleeves and gets to work.
Acceptance wouldn't be for her. It would be for us, for our fears of failure. I can't speak for any other parents out there, of children who are broken or exceptional or shy or hyperactive or just plain weird or whatever. But for myself, I was blessed from the very beginning because while I had a great deal of fear, Schuyler had none. She has none today.
And she has no use for Holland, either.
April 22, 2007
Dispatches from inside monster-occupied territory
One of the things we'd sort of come to accept about Schuyler's condition was that the effects of polymicrogyria on her fine motor skills meant that handwriting for her was always going to be difficult, if not impossible. For a long time, her writing was awkward to the point of being unreadable, which was less of a problem once she started to do well on the Big Box of Words. It was generally accepted that Schuyler will almost certainly never be able to speak and probably not be able to write, either, but with the BBBoW, that was fine. It was one more aspect of PMG that she might not be able to knock down, but with the right tools, she could just walk around it instead.
One of Schuyler's defining characteristics, however, is her stubborn refusal to give up on something. That's not going to be a surprise to anyone who's been reading about her for even just a little while. When something defeats her, you can see it in her eyes, beneath her cheerful shrug of acceptance. Outwardly, she seems to say "Okay, whatever, no big deal." Watch carefully, however, and you'll see that last lingering glance. "I'll be back to kick your ass later." And she always does.
In the past month or two, her handwriting has suddenly improved dramatically. She loves to spell, and she loves to write. (As an author, you have no idea how happy that makes me, even if she ends up writing a book one day saying how full of crap I was.) When she woke me up this morning, the first thing she did was start writing notes. The first was this one, "Love mommy and daddy". The second was a note demanding cereal for breakfast.
It's clumsy, sure, and when she runs out of space, she continues mid-word on the next line. But damn it, she's writing, and we can read it, and that's just one more thing we were told she'd probably never do.
It may not look like much to you, but to us, it's like professional calligraphy.
One of Schuyler's defining characteristics, however, is her stubborn refusal to give up on something. That's not going to be a surprise to anyone who's been reading about her for even just a little while. When something defeats her, you can see it in her eyes, beneath her cheerful shrug of acceptance. Outwardly, she seems to say "Okay, whatever, no big deal." Watch carefully, however, and you'll see that last lingering glance. "I'll be back to kick your ass later." And she always does.
In the past month or two, her handwriting has suddenly improved dramatically. She loves to spell, and she loves to write. (As an author, you have no idea how happy that makes me, even if she ends up writing a book one day saying how full of crap I was.) When she woke me up this morning, the first thing she did was start writing notes. The first was this one, "Love mommy and daddy". The second was a note demanding cereal for breakfast.
It's clumsy, sure, and when she runs out of space, she continues mid-word on the next line. But damn it, she's writing, and we can read it, and that's just one more thing we were told she'd probably never do.
It may not look like much to you, but to us, it's like professional calligraphy.
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