This is one of those things that if you're an author, it feels so truthful that while it's really funny, it also stings just a bit.
Film by author Dennis Cass. (Thanks, Karen...)
May 30, 2008
Goodbye, old friend
I've donated Beelzebug to Texans Can!, an organization that helps at-risk kids get an education. They came and picked her up today.
The whole time they were hooking her up and taking her away, I had this big old lump in my throat. Okay, I need to go take the New Hotness for a drive before I turn into an old woman for good.
May 28, 2008
She constantly changes, she never changes
About two hours to the southwest of here, there's a town called Glen Rose. It's known around these parts for two things: the Commanche Peak nuclear power plant and Dinosaur Valley State Park, location of a large concentration of dinosaur footprints preserved in the bed of the Paluxy River. We took Schuyler to Glen Rose over the weekend. Not to see the power plant (cool though that might have been), but rather to see some of the actual footprints made by real dinosaurs.
It's hard to say why Schuyler loves big monsters so much, although I've always had the feeling that she sees them as her natural allies. As I've written before, she's never been afraid of them. Whether it's King Kong or dinosaurs or the Cloverfield monster, she's always been drawn to them as friends. Even her most recent imaginary creature, the Grass Monster, can be tamed by pouring a little bit of beverage onto the ground. When it comes to monsters, they are all Schuyler's.
As she grows older and girlier, her interests have shifted, like any little girl's might, but on her own terms as usual. I am encouraged that she doesn't want to be a princess, and if you call her one, she adamantly declares, "I'm not a princess. I'm a queen." Even at eight, she's not interested in middle management. A few weeks ago, I used a bunch of Amazon credits I'd accumulated to buy her a wooden castle that she'd wanted for a long time, and I don't know if I've ever seen her happier. She has populated it with fairies, and princesses, and cute little animals.
But there are a few dinosaurs and dragons hanging around outside the castle walls, peeking in the windows from time to time. Sometimes they come inside, not to bring mayhem, but to join in the fun. Her dinosaurs never attack anyone (although they do occasionally eat some of the animals). To Schuyler, there's nothing incongruous about their presence in her world.
The dinosaur park was a hit, I think. She gawked at the slightly ridiculous giant fiberglass dinosaurs guarding the park's entrance, and she wanted nothing more than to splash into the river and explore. We kept up as best as we could, slipping on the rocks and twisting our ankles every three or four steps. Schuyler saw the footprints, and she seemed impressed, but mostly she didn't want to look. She wanted to do. Long ago dinosaurs can't compete with being a wild kid in a fast-moving stream.
Schuyler is changing, she's leaving some of the things from her past behind her. She's becoming interested in the concrete world around her, like the "grow your own butterflies" kit we got for her recently. She checks on the caterpillars every day when she gets home from school, watching for them to begin their transformation. I watch her as she transforms herself.
But when the evenings wind down, she still brings a stuffed animal or a doll to bed with her, and since this past weekend, she's taken to looking over the edge of her loft bed, down at the new poster on her wall. It's a brachiosaurus, tall and vaguely menacing (for a salad eater), and she's captivated by it. The last time I put her to bed, she said goodnight to it, and blew it a kiss.
It's hard to say why Schuyler loves big monsters so much, although I've always had the feeling that she sees them as her natural allies. As I've written before, she's never been afraid of them. Whether it's King Kong or dinosaurs or the Cloverfield monster, she's always been drawn to them as friends. Even her most recent imaginary creature, the Grass Monster, can be tamed by pouring a little bit of beverage onto the ground. When it comes to monsters, they are all Schuyler's.
As she grows older and girlier, her interests have shifted, like any little girl's might, but on her own terms as usual. I am encouraged that she doesn't want to be a princess, and if you call her one, she adamantly declares, "I'm not a princess. I'm a queen." Even at eight, she's not interested in middle management. A few weeks ago, I used a bunch of Amazon credits I'd accumulated to buy her a wooden castle that she'd wanted for a long time, and I don't know if I've ever seen her happier. She has populated it with fairies, and princesses, and cute little animals.
But there are a few dinosaurs and dragons hanging around outside the castle walls, peeking in the windows from time to time. Sometimes they come inside, not to bring mayhem, but to join in the fun. Her dinosaurs never attack anyone (although they do occasionally eat some of the animals). To Schuyler, there's nothing incongruous about their presence in her world.
The dinosaur park was a hit, I think. She gawked at the slightly ridiculous giant fiberglass dinosaurs guarding the park's entrance, and she wanted nothing more than to splash into the river and explore. We kept up as best as we could, slipping on the rocks and twisting our ankles every three or four steps. Schuyler saw the footprints, and she seemed impressed, but mostly she didn't want to look. She wanted to do. Long ago dinosaurs can't compete with being a wild kid in a fast-moving stream.
Schuyler is changing, she's leaving some of the things from her past behind her. She's becoming interested in the concrete world around her, like the "grow your own butterflies" kit we got for her recently. She checks on the caterpillars every day when she gets home from school, watching for them to begin their transformation. I watch her as she transforms herself.
But when the evenings wind down, she still brings a stuffed animal or a doll to bed with her, and since this past weekend, she's taken to looking over the edge of her loft bed, down at the new poster on her wall. It's a brachiosaurus, tall and vaguely menacing (for a salad eater), and she's captivated by it. The last time I put her to bed, she said goodnight to it, and blew it a kiss.
May 26, 2008
Memorial Day, 2008
At a Calvary near the Ancre
One ever hangs where shelled roads part.
In this war He too lost a limb,
But His disciples hide apart;
And now the Soldiers bear with Him.
Near Golgotha strolls many a priest,
And in their faces there is pride
That they were flesh-marked by the Beast
By whom the gentle Christ's denied.
The scribes on all the people shove
And brawl allegiance to the state,
But they who love the greater love
Lay down their life; they do not hate.
Wilfred Owen (1893-1918)
WWI soldier poet, describing a roadside crucifix damaged in battle
May 22, 2008
Summerfest: READ, Concert on the Patio
I have more information on next weekend's event in Fort Worth.
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Summerfest: READ, Concert on the Patio
05/31/2008
TCU Barnes & Noble Bookstore
2950 West Berry St.
Fort Worth, TX 76109
Taylor Witt, Event Coordinator
817.257.7844 | taylor.witt@tcu.edu
Join us May 31 from 12pm - 8pm for the kickoff event to our summer-long book drive benefiting the Women's Center of Tarrant County's Literacy Program. Music by Conspiracy of Thought, Waiting for Decay, and local band Fate Lions.
Guest Authors Dr. David Cross and Dr. Karyn Purvis, authors of The Connected Child, and Robert Rummel-Hudson, author of Schuyler's Monster, will discuss and sign copies of their books. We'll have prizes, face painting and a visit from Curious George!
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Summerfest: READ, Concert on the Patio
05/31/2008
TCU Barnes & Noble Bookstore
2950 West Berry St.
Fort Worth, TX 76109
Taylor Witt, Event Coordinator
817.257.7844 | taylor.witt@tcu.edu
Join us May 31 from 12pm - 8pm for the kickoff event to our summer-long book drive benefiting the Women's Center of Tarrant County's Literacy Program. Music by Conspiracy of Thought, Waiting for Decay, and local band Fate Lions.
Guest Authors Dr. David Cross and Dr. Karyn Purvis, authors of The Connected Child, and Robert Rummel-Hudson, author of Schuyler's Monster, will discuss and sign copies of their books. We'll have prizes, face painting and a visit from Curious George!
Because everyone LOVES to read about dreams
In my dreams, Schuyler almost always does the same thing. She talks to me. She's always sitting next to me, and she's usually holding my hand. And she always says the same thing, or some variation of it. She always tells me it's going to be okay.
Last night, I had a different dream about her. In this dream, we were outside, and she was running across a field, or a park. Every so often, she turned and called out to me. "Come on, Daddy! Hurry up!" Then she kept running, and I couldn't catch up to her or call out to her.
And in front of her, the sky was dark except for lightning flashes, and a tornado was beginning to form.
I woke up before the alarm this morning from this dream, and I tried to go back to sleep, but my mind was in that "Oh, fuck THAT" mode that it goes into when it wants nothing to do with the delights that my subconscious is serving up.
I'm not one to give much credence to dreams as prophecies, although in the past I have had a few that turned out to be wickedly accurate. I still believe that when our dreams do come true, it's because our subconscious minds have picked up on clues that we might not be processing consciously just yet. I don't believe in "Watch your ass!" messages from the Great Beyond.
And I certainly don't think Schuyler is doomed to be eaten by the weather.
Things have gone so well for us for the past few months, and if anything, I suspect my subconscious mind is saying "Okay, so what's the catch?" (As if the first five or six years of Schuyler's life weren't the catch.) So I'm not going to read too much into whatever sort of metaphorical bugbear my mind is trying to call up for me.
Still, though. That wasn't much fun, and it's been bugging me all day.
Last night, I had a different dream about her. In this dream, we were outside, and she was running across a field, or a park. Every so often, she turned and called out to me. "Come on, Daddy! Hurry up!" Then she kept running, and I couldn't catch up to her or call out to her.
And in front of her, the sky was dark except for lightning flashes, and a tornado was beginning to form.
I woke up before the alarm this morning from this dream, and I tried to go back to sleep, but my mind was in that "Oh, fuck THAT" mode that it goes into when it wants nothing to do with the delights that my subconscious is serving up.
I'm not one to give much credence to dreams as prophecies, although in the past I have had a few that turned out to be wickedly accurate. I still believe that when our dreams do come true, it's because our subconscious minds have picked up on clues that we might not be processing consciously just yet. I don't believe in "Watch your ass!" messages from the Great Beyond.
And I certainly don't think Schuyler is doomed to be eaten by the weather.
Things have gone so well for us for the past few months, and if anything, I suspect my subconscious mind is saying "Okay, so what's the catch?" (As if the first five or six years of Schuyler's life weren't the catch.) So I'm not going to read too much into whatever sort of metaphorical bugbear my mind is trying to call up for me.
Still, though. That wasn't much fun, and it's been bugging me all day.
May 18, 2008
Beelzebug's sweet sorrow
It was eight years ago almost exactly that we bought the '99 VW Beetle that we came to know as Beelzebug. It was the week before Mother's Day, meaning it was also a week before we discovered that Julie was pregnant. At the time, my friend Jim in Texas wrote to tell me what a mistake it was, buying this cheap, trendy little car instead of something good and solid and responsible that would last for years.
Well, Jim's been right about a great many things over the years, remarkably so considering that he suffers from a persistent rash known as Conservative Republicanism (I hear there's a treatment for that now), but he was wrong about Beelzebug.
That's not to say that the car never had problems. Things started going wrong with it just about as soon as the warranty ran out, things like plastic switches and little hipster accents. But the car has never experienced any serious engine problems and has gotten us from the tundra of Kalamazoo to the demilitarized zone of Detroit, then to New England for four years before finally moving me and all my crap to Austin and then finally to Plano.
It's been nine years and 122,000 miles (not easy miles, either), however, and poor Beelzebug has been making ominous sounds for some time. The air conditioning hasn't worked for a while (which makes for a delightful driving experience in Texas), and the engine tends to overheat when the car isn't moving (like in, oh, say, Dallas rush hour traffic). There's a lot of work that would need to go into repairing the car, and putting all that money into a nine year-old plastic, trendy, high-mileage car feels a little like giving a heart transplant to a 100 year-old patient. Every time poor Beelzebug makes one of its scary noises or overheats, you can almost hear it whispering its DNR request.
"No heroic measures," it seems to say. "Please just let me go..."
We've been looking at new cars for a few months now, and we had pretty much decided on half a dozen different cars before changing our minds. We had actually decided to get a Mini Cooper S, the choice originally made by Schuyler and which certainly would have felt like a worthy hipstery successor to Beelzebug. We came as close as filling out the paperwork and toying with the deposit. Seriously, we were close. It would have been yellow. Yellow. You know of my love of yellow.
But in the end, we got an excellent deal on a Mazdaspeed3, which looks like the respectable, four-door Mom & Dad hatchback Mazda3 but has a ridiculously punchy engine and will pretty much go as fast as you ever would want to go. It actually scares me, a lot. And it turns out that it was built in Hiroshima, which tweaked me a little bit, for some reason.
But no matter how much I grow to love this new car (and I have to be honest, I am digging it a lot), it'll never be quite the same as Beelzebug. We brought Schuyler home from the hospital in that car, after all. How do you top that? Goodbye, old friend.
Well, Jim's been right about a great many things over the years, remarkably so considering that he suffers from a persistent rash known as Conservative Republicanism (I hear there's a treatment for that now), but he was wrong about Beelzebug.
That's not to say that the car never had problems. Things started going wrong with it just about as soon as the warranty ran out, things like plastic switches and little hipster accents. But the car has never experienced any serious engine problems and has gotten us from the tundra of Kalamazoo to the demilitarized zone of Detroit, then to New England for four years before finally moving me and all my crap to Austin and then finally to Plano.
It's been nine years and 122,000 miles (not easy miles, either), however, and poor Beelzebug has been making ominous sounds for some time. The air conditioning hasn't worked for a while (which makes for a delightful driving experience in Texas), and the engine tends to overheat when the car isn't moving (like in, oh, say, Dallas rush hour traffic). There's a lot of work that would need to go into repairing the car, and putting all that money into a nine year-old plastic, trendy, high-mileage car feels a little like giving a heart transplant to a 100 year-old patient. Every time poor Beelzebug makes one of its scary noises or overheats, you can almost hear it whispering its DNR request.
"No heroic measures," it seems to say. "Please just let me go..."
We've been looking at new cars for a few months now, and we had pretty much decided on half a dozen different cars before changing our minds. We had actually decided to get a Mini Cooper S, the choice originally made by Schuyler and which certainly would have felt like a worthy hipstery successor to Beelzebug. We came as close as filling out the paperwork and toying with the deposit. Seriously, we were close. It would have been yellow. Yellow. You know of my love of yellow.
But in the end, we got an excellent deal on a Mazdaspeed3, which looks like the respectable, four-door Mom & Dad hatchback Mazda3 but has a ridiculously punchy engine and will pretty much go as fast as you ever would want to go. It actually scares me, a lot. And it turns out that it was built in Hiroshima, which tweaked me a little bit, for some reason.
But no matter how much I grow to love this new car (and I have to be honest, I am digging it a lot), it'll never be quite the same as Beelzebug. We brought Schuyler home from the hospital in that car, after all. How do you top that? Goodbye, old friend.
May 16, 2008
Getting Schuyler
I never know what I'm going to write about here, and really, it could be anything. (My elderly but faithful car Beelzebug is going to get a post soon, after all.) But in general, there have been two kinds of entries that come up the most in recent months: Schuyler and Schuyler's Monster.
I make no apologies for writing about the publication experience, by the way. If I am blogging about my life and in particular my life with Schuyler, then the fact that it's a memoir, and more specifically a memoir about her, means that when people say "We want to hear more about what's going on with Schuyler!", this is a huge part of what's happening right now. So yes, in general of late, you've gotten a lot of two things. Either I'm trying to make Schuyler come to life for you, or I'm talking about the book and its media exposure.
Tonight, I'm happy to announce that I'm going to do both.
The story that Fox 26 Houston reporter Greg Groogan and special projects photographer/editor Matt Matejka put together was broadcast earlier tonight in Houston. It looks like it's going to run in some other markets, including the Dallas area, so don't be surprised if you see my big, white, doughy Robba the Hutt head on your tv soon. And possibly during the dinner hour, too, for which I can only say that I'm truly sorry. It doesn't exactly do my poor heart good either, looking at that face every morning. You at least get to look like you.
It's a different kind of story than has been done before, I'll say that right off. It's of a somewhat higher pitch emotionally, for example. But I like it, and the primary reason for that is simple.
They captured Schuyler. In the short space of the story, and really mostly in the latter half of the story, they show the Schuyler that I know and love and have been trying for all these years to show to you.
A lot of people are curious about her. They want to see how she talks and how she uses her device, and they want to know some very simple things. For the people who have come to feel emotionally invested in Schuyler (and I am learning that there are more of them than I ever imagined), they want to know most of all that she's happy.
And if there's nothing more that you take away from Greg's story, I hope that you'll see just how happy she really is. I see Schuyler's happiness and I want it for myself, I want to laugh like that every day of my life.
And the funny thing is, because of Schuyler, I usually do.
Thanks, Greg, Matt and everyone else at Fox 26.
MyFox Houston | Schuyler's Monster: Texas Dad Writes Book About Child's Disease
May 12, 2008
Things are afoot at the Purple Cow
The father of one of Schuyler's friends at school left this comment on an earlier post, and I thought since it was left as a public comment rather than an email, it would probably be okay to share here.
I think it gives a unique view of sharing a few moments in Schuyler's world, from a different perspective.
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eran has left a new comment on your post "Mosaic":
I think it gives a unique view of sharing a few moments in Schuyler's world, from a different perspective.
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eran has left a new comment on your post "Mosaic":
Tonight we celebrated my son's fifth birthday at the Purple Cow. For those of you not familiar with Plano, this is a fifties type diner in Plano that has a model train running on a track suspended from the ceiling. But the big attraction is that they serve purple milkshakes. Essentially, it's our kids' restaurant of choice.
I got there a little bit early before my wife and kids showed up and had a few minutes to have some thoughts to myself. For some reason I thought, "I wonder if we will see Rob and Schuyler here tonight." It was a fair enough assumption because we often see people who we know every time we eat there.
Well about 15 minutes after my family arrived, my daughter says "There's Schuyler!" Yup, I'm not lying, I really wondered if we would see her in there. Lauren knows Schuyler because she has been in all of Schuyler's classes at Gulledge. Lauren and I walked over and I introduced myself to Schuyler and Julie. Pretty much after that Lauren, Schuyler, and my son Scott were inseparable the rest of the time we were in the Purple Cow. They picked songs to play on the jukebox (Lauren always plays YMCA by the Village People). They eventually ditched the boring parents, sat at the bar and ordered purple and chocolate ice cream. I'm not sure who paid for that actually. Rob, please let me know if they charged you guys for my kids ice cream and I'll pay you back.
This was my first time meeting Schuyler and I have to confess I got excited the way someone does who sees a celebrity. I think because I read the book I built up a mental dialog and wanted to see it played out by the real actors. I asked her if she liked soccer and how many goals she scored this season. She raised 8 fingers. She had a very good season indeed! Lauren's been playing for two and half years constantly and she has only scored 3.
Schuyler is a riot. She has a lot of energy and she is laughing constantly. When the kids were all sitting down at the bar, I joined them. I enjoy watching Lauren hanging out with kids her own age. I see a side of her that I don't often see at home. To tell you the truth, I could understand almost everything Schuyler said to me tonight. She has learned to be expressive with her hands which does help. She had her device at Julie's table but she just wanted to hang out without it.
Julie came by and spoke with us a little bit. I asked her about the device which she showed off to me. I'm a computer programmer so my inner geek came out and I wanted to know all about it. After Julie and I talked I began think about how Schulyer could communicate in the future once she outgrew her device. I actually see her using a Blackberry sized device with a full QWERTY keyboard. This device would have a strong enough speaker so that she others could listen in a crowded room. I hope that as the AAC generation gets older the technology evolves with them.
Anyway, we had a lot of fun. Lauren kept asking me if Schuyler could come over tonight. I told her that Schuyler and Julie were eating with a friend and tonight was not a good night. However, maybe someday soon she can come over and we can have a soccer game.
May 11, 2008
Sometimes I get it right, and others times not so much.
One of the things about Schuyler's condition that you might not know is that it causes her to drool at times. It's the same thing that makes her mouth unable to form consonants, a lack of sensitivity that causes her to slobber without necessarily always feeling it on her face. It could be much worse; in some kids with PMG, it actually manifests itself in partial facial paralysis.
I don't write about it very often because it's certainly not how I want her to be represented. Every now and then she gets made fun of for it, both in person and even online (including once by a "friend" of mine, although I doubt very much that she realizes that I know who it was). But all the same, it's part of life with Schuyler's monster, and it's part of who she is. No embarrassment, no shame, just a quick word (or even a discreet "wipe your mouth" gesture) and she takes care of it. But still, it's there and we deal with it.
Yesterday, she and I were waiting to pick up some food at a Chinese restaurant. We were both sitting there sort of lost in thought, and so when she started to drool, neither of us really took notice at first. When I finally saw it and took out the ever-present napkin to quickly wipe her face, I noticed a woman sitting a few seats down from us. She was watching us without even trying to hide her gaze.
Just about this time, our food was ready. I grabbed the bag, took Schuyler's hand and stepped toward the door, giving her face one last quick wipe. As I did so, we passed the woman. She looked down at Schuyler and then back at me.
"That's disgusting," she said.
I glanced down to see that Schuyler was a few steps ahead of me and couldn't hear me. I then looked at the woman and opened my mouth.
Maybe I was going to take advantage of this possible teaching moment to educate her about kids with disabilities. Or perhaps I was going to use my quick, cutting, fancy pants authorly wit to sting her with some erudite word missile that would cause her to stop and think about her lack of sensitivity. Or maybe, just maybe, I was going to offer a kind and forgiving word or two, something to make her small Grinchy heart grow three sizes that day.
"Fuck you," I said.
We walked out quickly as she stormed into the dining room, presumedly to find a boyfriend or husband to come give me a beat down.
And here's the thing. I'd love to be able to say that as I think back on that moment, I now have a handful of intelligent responses that I wish I'd used on her. But honestly? I keep coming back to "fuck you".
I don't write about it very often because it's certainly not how I want her to be represented. Every now and then she gets made fun of for it, both in person and even online (including once by a "friend" of mine, although I doubt very much that she realizes that I know who it was). But all the same, it's part of life with Schuyler's monster, and it's part of who she is. No embarrassment, no shame, just a quick word (or even a discreet "wipe your mouth" gesture) and she takes care of it. But still, it's there and we deal with it.
Yesterday, she and I were waiting to pick up some food at a Chinese restaurant. We were both sitting there sort of lost in thought, and so when she started to drool, neither of us really took notice at first. When I finally saw it and took out the ever-present napkin to quickly wipe her face, I noticed a woman sitting a few seats down from us. She was watching us without even trying to hide her gaze.
Just about this time, our food was ready. I grabbed the bag, took Schuyler's hand and stepped toward the door, giving her face one last quick wipe. As I did so, we passed the woman. She looked down at Schuyler and then back at me.
"That's disgusting," she said.
I glanced down to see that Schuyler was a few steps ahead of me and couldn't hear me. I then looked at the woman and opened my mouth.
Maybe I was going to take advantage of this possible teaching moment to educate her about kids with disabilities. Or perhaps I was going to use my quick, cutting, fancy pants authorly wit to sting her with some erudite word missile that would cause her to stop and think about her lack of sensitivity. Or maybe, just maybe, I was going to offer a kind and forgiving word or two, something to make her small Grinchy heart grow three sizes that day.
"Fuck you," I said.
We walked out quickly as she stormed into the dining room, presumedly to find a boyfriend or husband to come give me a beat down.
And here's the thing. I'd love to be able to say that as I think back on that moment, I now have a handful of intelligent responses that I wish I'd used on her. But honestly? I keep coming back to "fuck you".
May 9, 2008
"Monster, Monster über alles..."
Well, it looks like Schuyler's Monster is going to be translated into German. The deal is in the works, by golly.
The first thing I did when I found out was go to one of those translation sites to see what "Schuyler's Monster" becomes in German.
Turns out, it's "Schuyler's Monster". Well now, that's not very Teutonic and menacing.
The first thing I did when I found out was go to one of those translation sites to see what "Schuyler's Monster" becomes in German.
Turns out, it's "Schuyler's Monster". Well now, that's not very Teutonic and menacing.
May 7, 2008
Mosaic
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".
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".
Ten words = free stuff?
My friend Karen Harrington, author of Janeology, is having a fun contest on her site. To celebrate her recent good review from the New Mystery Reader, she's giving away signed copies of her book. All you have to do is write a ten word story about a dysfunctional family. (One of the core elements of her book is a pretty extreme level of family dysfunction, I think it's safe to say.) Ten words, no more and no less.
Win free copies of JANEOLOGY
For my own entry, I came up with this, about a 100% totally fictional family with whom I am not one bit associated and who should not call later to complain, because it's just a joke and a little writing exercise, and, uh, yeah.
"If they'd known about the book, they might have behaved."
Incidentally, I don't get to read a lot of fiction, certainly not as much as I'd like to, but Karen's book was a lot of fun. I liked it so much, I reviewed it on Amazon. I'm swell that way.
May 6, 2008
May 5, 2008
Single Mom, um, Interviewing
I was interviewed by my friend and Single Mom Seeking author Rachel Sarah last week. The title of the interview addresses what might be your first question:
What’s a married dad doing on Single Mom Seeking? Welcome Robert Rummel-Hudson
I actually got to meet Rachel when I was in New York, and one of my biggest regrets is that I didn't get to talk to her longer. You think that book release parties and signing events are going to be a great opportunity to get to know people, but the opposite is actually true.
Her site is one of those that grows out of a book and takes on a vibrant life of its own, and I am thrilled that she wanted me to be a part of it.
What’s a married dad doing on Single Mom Seeking? Welcome Robert Rummel-Hudson
I actually got to meet Rachel when I was in New York, and one of my biggest regrets is that I didn't get to talk to her longer. You think that book release parties and signing events are going to be a great opportunity to get to know people, but the opposite is actually true.
Her site is one of those that grows out of a book and takes on a vibrant life of its own, and I am thrilled that she wanted me to be a part of it.
May 2, 2008
Hello there, Houston
UPDATE: I just heard from the reporter. Apparently his bosses like the story so much that they are going to hold it for a bigger ratings night and do some local promotion for it. So look for this to run on May 12th.
--------
If you live in Houston, you can catch Greg Groogan's story on Schuyler's Monster and the Rummel-Hudsons tonight at 9pm Central on Fox 26.
For those of you not in Houston, you can watch a live video stream. (It shows traffic the rest of the time, which I've found myself strangely mesmerized by all morning.) I'll post a link to the story at the end of this entry as soon as it goes up, probably tomorrow.
I think this is going to be a good story. I got a little sneak preview of the script in progress the other day, and it's a little more dramatic and personal than the ones we've participated in before, which is sort of fun. It's nice to change thing up now and then.
While I was watching the live feed this morning, I just happened to catch the "what's on tonight's broadcast" guy:
"Tonight you're going to meet a father whose successful struggle with his daughter's autism has led to a novel."
Well, okay. Close enough. At least he didn't say she had monkeypox.
--------
If you live in Houston, you can catch Greg Groogan's story on Schuyler's Monster and the Rummel-Hudsons tonight at 9pm Central on Fox 26.
For those of you not in Houston, you can watch a live video stream. (It shows traffic the rest of the time, which I've found myself strangely mesmerized by all morning.) I'll post a link to the story at the end of this entry as soon as it goes up, probably tomorrow.
I think this is going to be a good story. I got a little sneak preview of the script in progress the other day, and it's a little more dramatic and personal than the ones we've participated in before, which is sort of fun. It's nice to change thing up now and then.
While I was watching the live feed this morning, I just happened to catch the "what's on tonight's broadcast" guy:
"Tonight you're going to meet a father whose successful struggle with his daughter's autism has led to a novel."
Well, okay. Close enough. At least he didn't say she had monkeypox.
April 28, 2008
Deus ex machina
When Schuyler's Monster was published, I think the thing that surprised my friends the most, even more than my confessed infidelity (because let's face it, who was really surprised?), was the fact that I wrote so much about God. To be honest, I was a little surprised myself.
"For now, she largely remains an enigma, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."
After the book came out, and especially after I began talking about faith issues on tour and in book clubs, and now on television, a lot of people have been writing to me about it. That's fair enough, and it's a dialogue I welcome. If I didn't, I wouldn't have written about it. But it's been hard to discuss because my own feelings are in flux. I think that's the way faith is for most people. Does anyone ever truly arrive at an endpoint in their philosophy? I'm not sure I trust anyone who is absolutely sure of very much in this world.
It didn't take me long as a child to decide that I wasn't a Christian and never would be. Sorry, Jesus. I'm just not that into you. But my feelings about God have been more complicated, even before Schuyler was born. It's probably no secret that my feelings have become much more convoluted since she was diagnosed. Well, of course they have.
But the thing is, I've never given up on the idea of God, not completely. My God might not be your God, not if you buy into the whole "angry invisible man in the sky" idea. I find the idea of moral judgment from on high to be so subjective as to be meaningless. When I refer to "this grand rough world" as I sometimes do (and no one has ever identified the source of that phrase), I mean a place that is wondrous and terrible, a universe of unspeakable beauty and unblinking cruelty. It can be difficult to place God in the context of such a place.
And yet, sometimes I try. Sometimes I want an answer from God, an answer to why he sometimes breaks children. It seems like a fair question to me, and yet the God that I seem to have constructed in my head (like I think we all do, which is why our God tends to hate all the same people that we do) doesn't have the answers. Perhaps my God is less of a Creator and more of a Manager. Maybe he built the store, but now he works behind the counter, and what his customers do is beyond his control and maybe even his understanding.
I find Manager God easier to accept than Control Freak God, because then we're back to the idea that he intentionally breaks little children, allows vile things to happen to them, makes a mockery of their innocence. And that's hard. I hear a lot of variations on "God works in mysterious ways", about how Schuyler and all the broken children in the world are here to teach us things, or how their brokenness has some greater meaning. And I just can't accept that, I can't make peace with the idea that they exist and suffer in order to illuminate the rest of us.
And yet.
There are things about myself that I accept as a sort of hardwired reality. I can resist them, and I do, but they are there and they are me. I'm always going to have a temper, and poor impulse control, and most of all issues with authority. I'm not actually sure I'd want to change all that. I'm never going to be the poster boy for monogamy and I doubt very seriously if I'll ever get a job as a responsible financial planner. I can always try to do better, but the thing is, it'll always be something that I must try to improve. I'm flawed, like the rest of you but probably more than most. Perhaps it is to my advantage that my worser nature is in a book now; people who can't deal with my flaws can't say they weren't warned.
And yet, Schuyler came to me. To me, and to Julie, who shares most of my flaws. And I'm going to flatter myself to think that we've done pretty well for her. We made lots of mistakes, and we continue to do so, and our flaws haven't magically disappeared. But we're managing to raise a pretty amazing little girl, one who is as broken as we are and yet perfect in her own way.
I don't know how God fits into that. I remember that very few of the people in the Bible or throughout history who were doing God's work were very strong believers. Blind faith and religious fealty don't necessarily seem to lead to great deeds. They doubted, and they sinned, and if a doubter and a sinner can labor for God while simultaneously calling him on his bullshit every so often, then perhaps I've still got some work to do. I can shake my fists at the sky and say "oh, that's fucked up!" when such a gesture is appropriate, and then get back to work.
God and I have some things to work out. But negotiations haven't broken down just yet.
"For now, she largely remains an enigma, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."
After the book came out, and especially after I began talking about faith issues on tour and in book clubs, and now on television, a lot of people have been writing to me about it. That's fair enough, and it's a dialogue I welcome. If I didn't, I wouldn't have written about it. But it's been hard to discuss because my own feelings are in flux. I think that's the way faith is for most people. Does anyone ever truly arrive at an endpoint in their philosophy? I'm not sure I trust anyone who is absolutely sure of very much in this world.
It didn't take me long as a child to decide that I wasn't a Christian and never would be. Sorry, Jesus. I'm just not that into you. But my feelings about God have been more complicated, even before Schuyler was born. It's probably no secret that my feelings have become much more convoluted since she was diagnosed. Well, of course they have.
But the thing is, I've never given up on the idea of God, not completely. My God might not be your God, not if you buy into the whole "angry invisible man in the sky" idea. I find the idea of moral judgment from on high to be so subjective as to be meaningless. When I refer to "this grand rough world" as I sometimes do (and no one has ever identified the source of that phrase), I mean a place that is wondrous and terrible, a universe of unspeakable beauty and unblinking cruelty. It can be difficult to place God in the context of such a place.
And yet, sometimes I try. Sometimes I want an answer from God, an answer to why he sometimes breaks children. It seems like a fair question to me, and yet the God that I seem to have constructed in my head (like I think we all do, which is why our God tends to hate all the same people that we do) doesn't have the answers. Perhaps my God is less of a Creator and more of a Manager. Maybe he built the store, but now he works behind the counter, and what his customers do is beyond his control and maybe even his understanding.
I find Manager God easier to accept than Control Freak God, because then we're back to the idea that he intentionally breaks little children, allows vile things to happen to them, makes a mockery of their innocence. And that's hard. I hear a lot of variations on "God works in mysterious ways", about how Schuyler and all the broken children in the world are here to teach us things, or how their brokenness has some greater meaning. And I just can't accept that, I can't make peace with the idea that they exist and suffer in order to illuminate the rest of us.
And yet.
There are things about myself that I accept as a sort of hardwired reality. I can resist them, and I do, but they are there and they are me. I'm always going to have a temper, and poor impulse control, and most of all issues with authority. I'm not actually sure I'd want to change all that. I'm never going to be the poster boy for monogamy and I doubt very seriously if I'll ever get a job as a responsible financial planner. I can always try to do better, but the thing is, it'll always be something that I must try to improve. I'm flawed, like the rest of you but probably more than most. Perhaps it is to my advantage that my worser nature is in a book now; people who can't deal with my flaws can't say they weren't warned.
And yet, Schuyler came to me. To me, and to Julie, who shares most of my flaws. And I'm going to flatter myself to think that we've done pretty well for her. We made lots of mistakes, and we continue to do so, and our flaws haven't magically disappeared. But we're managing to raise a pretty amazing little girl, one who is as broken as we are and yet perfect in her own way.
I don't know how God fits into that. I remember that very few of the people in the Bible or throughout history who were doing God's work were very strong believers. Blind faith and religious fealty don't necessarily seem to lead to great deeds. They doubted, and they sinned, and if a doubter and a sinner can labor for God while simultaneously calling him on his bullshit every so often, then perhaps I've still got some work to do. I can shake my fists at the sky and say "oh, that's fucked up!" when such a gesture is appropriate, and then get back to work.
God and I have some things to work out. But negotiations haven't broken down just yet.
Chapter Seven
First of all, can I get a woo? Why, thank you.
One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:
Raising Autistic Children Making Marriages Difficult
His story on Schuyler should run at the end of the week.
One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:
Raising Autistic Children Making Marriages Difficult
His story on Schuyler should run at the end of the week.
April 25, 2008
Pimpin', yo.
Author appearance
Saturday, April 26, 2008
2:00 pm
Barnes & Noble - Lewisville
Vista Ridge Village
2325 South Stemmons Freeway Suite 401
Lewisville, TX 75067
972-315-7966
I'll be there with Schuyler. This is the last regular appearance that I've got on my schedule (there's one in Fort Worth next month, but I'm not exactly sure how it's going to work), so if you want to meet Schuyler, abuse me in person or kill us and eat us (not recommended), this might be your last chance for a while.
I'm working on an entry on Faith, by the way. Hopefully I'll have it done today, just in case someone wants to issue a fatwa before the book signing. I share because I care.
Saturday, April 26, 2008
2:00 pm
Barnes & Noble - Lewisville
Vista Ridge Village
2325 South Stemmons Freeway Suite 401
Lewisville, TX 75067
972-315-7966
I'll be there with Schuyler. This is the last regular appearance that I've got on my schedule (there's one in Fort Worth next month, but I'm not exactly sure how it's going to work), so if you want to meet Schuyler, abuse me in person or kill us and eat us (not recommended), this might be your last chance for a while.
I'm working on an entry on Faith, by the way. Hopefully I'll have it done today, just in case someone wants to issue a fatwa before the book signing. I share because I care.
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