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":

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.

Tagged

I made it into this week's Tagged!, a weekly video series about books on the Barnes and Noble website. It's hosted by Molly Pesce, who I believe used to be on that iVillage show. My mention is maybe a third of the way in. They used lots of floating head photos, which was nice.

May 11, 2008

Sometimes I get it right, and others times not so much.


Travelers
Originally uploaded by Citizen Rob
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".

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.

May 7, 2008

Mosaic


Schuyler's bling
Originally uploaded by Citizen Rob
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".

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 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.

May 2, 2008

Hello there, Houston


Schuyler & Jasper
Originally uploaded by Citizen Rob
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.

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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


The Management
Originally uploaded by Citizen Rob
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.

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.

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.

April 24, 2008

When the visigoths get to the gate, I hope they have flag pins

Every now and then, someone will email me and ask if I ever intend to talk about politics again. This blog has sort of turned into the Rob & Schuyler Show, and that is in part intentional, especially for now while the book is new and people are coming here as a result.

But the truth is that I just haven't had much to say about politics. I've become so disheartened by the whole process that honestly, I don't have much to contribute. I've become the saddest of Independents, the kind who has given up on the two parties as Evil (R) and Incompetent (D). I'll never believe in the Republicans because they stand for everything I deem to be foul, but the Democrats? I may actually despise them a little more, since they dress themselves in my progressive values and then achieve almost nothing of worth at all. Both parties have achieved a level of consistency. I can always count on the Republicans to do the wrong thing, and I know the Democrats will follow up by trying half-heartedly to do the right thing, maybe, if the polls say they should, but ultimately fuck it up catastrophically.

Anyway, I've placed a little Obama widget on the sidebar there since unlike the Nixonian Hillary or the Magoo-like McCain, I can at least believe in what he says he stands for, and his much-maligned "lack of experience" means that he hasn't had time to really don the Cloak of Disappointment yet. But in my heart of hearts, I suspect he will. (Bill Clinton did, after all. Good lord, he needs one good and true friend, someone who's not afraid to lean over and say, "You really need to shut the fuck up now.")

Anyway, since the primary race has officially and flatulently stunk up just about every corner of the media and trying to ignore it is becoming impossible, I thought I'd let The Onion speak for me.


Poll: Bullshit Is Most Important Issue For 2008 Voters

Good Morning Texas Redux

Some of you were having trouble seeing the video from the WFAA site. Also, it cut off at the end before you got to see Julie's Stepford Wife smile and Schuyler mentally compiling her list of places she would rather be at that moment. So here's another shot at it. (Sorry the quality is sort of weird. I'll keep working on it.)

April 23, 2008

Good Morning Texas


Good Morning Texas
Originally uploaded by Citizen Rob
Well, that was fast. My interview on Good Morning Texas is already online, so go check it out. I'm sorry to say, this clip cuts off before you get to see Schuyler and Julie sitting in the studio, so sadly it's just me and my unusually large meaty head.

I thought it went very well. It's hard in these very short segments to really get into very much of depth, but Paige McCoy Smith managed to cover an astonishing amount in a brief period. She asked me about my faith, which was a little unexpected (although she did give me a heads up before we started) but something that I was actually happy to talk about. It's funny, but the interviews for which I am the most prepared in terms of knowing questions in advance and what my answers will be, those tend to be my least favorite, and the ones that I think are the least interesting. Discussing my feelings about God on live television isn't something I would have ever expected to actually enjoy doing, but I'm glad she asked it. My answer was pretty much on the fly, and yet I'm entirely happy with it.

Another thing that Paige brought home to me was just how much I enjoy doing interviews with journalists who have actually read the book. That seems like an obvious point, but you'd be surprised. And it's always obvious, too. Not so much that they know facts that are pertinent, although that's part of it. (My favorite from a past interview was, about Schuyler's static brain condition, "Good luck with her continued improvement.") It's more that once you've read a book, you know a great deal about the author's personality and beliefs and such than you'll ever get from a press release or a book flap description. Paige McCoy Smith and KERA's Krys Boyd and Fox's Greg Groogan were responsible for interviews that I've enjoyed immensely, for just that reason.

Schuyler had a great time, of course, and charmed the pants off of everyone, as usual. The studio at WFAA is wide open, with glass walls everywhere, even the green room, so while you're waiting, you can see much of what's going on. She spent the better part of the morning having her mind completely blown, and finished off the experience by eating the strawberry smoothie prepared in a segment by "celebrity chef Jon Ashton". Julie finished up the morning by slobbering all over "celebrity chef Jon Ashton". It's sad, really, watching a woman of her advanced years lose her dignity like that. Really unfortunate.

Okay, so I really shouldn't tell this story, because past experience suggests that the chances of it getting back to the parties involved are somewhere near 100%. But it's been a while since I've started any trouble online (at least here; I've been poking a bees' nest on a parenting site on the topic of spanking, a metaphor that only works if you imagine really dumb bees), so I think I'm due.

While we were waiting for the show to begin, we were sitting in a room watching "Good Morning America" with two fashion models who were going to be on a segment before mine. GMA was interviewing Marlee Matlin about her appearance on "Dancing with the Stars", and she was signing away as she talked.

One of the models turned to the other and said, with absolute sincerity, "Do you think she's deaf?"

April 21, 2008

Take Your Daughter to Work Week

This is a busy week for us, in the best possible way. As I mentioned before, this Wednesday I'll be on a Dallas-area program called Good Morning Texas, on a segment called The Not So Perfect Parent. Julie and Schuyler will be in the green room, and may very well make an appearance on the show. Well, I certainly hope they do, because let's face it, who would YOU rather watch? Lovely Julie and enchanting Schuyler, the self-described "Queen of the Monkeys"? Or, you know, fat old Robba the Hutt? The show comes on during the breakfast hour, after all. No need upsetting people while they're eating.

The other thing taking place this week is a book signing at the Barnes & Noble in Lewisville, Texas. If you live in the area and would like to meet me (or really, more to the point, if you'd like to meet Schuyler), we'll be there at 2:00pm. It's going to be a special event (as in, totally unpredictable and possibly chaos-in-pink-Chuck-Taylors) because Julie has to work, so it will just be Schuyler and me. This means that if I do a reading, she'll be on her own. Anyone who has seen her at these events knows just how much fun that might be. Come to the signing and watch the last shreds of parental authority fly out of my shaking hands!

A bonus for people in attendance: Schuyler loves to sign books, and she's become very sophisticated in her approach. We attended a very cool book club last week, and it should come as no surprise that her signature was pretty clearly coveted more than mine. Which is as it should be.

When Schuyler signs a book, her name stretches across the page, the letters blockish and angular but very meticulously written out. She ends her autograph with a period, every time, and occasionally she'll sneak down and put a period at the end of mine, too. If she gets to the edge of the page before she's done, she simply shifts into vertical mode for the rest of her name. Sometimes she'll pick a different page to sign, and often she quickly signs in the spot that I usually use, just to be a turd. She even laughs when she does it. Every time she signs her name, it's different, and not just slightly.

I'm always thrilled to sign books for stores, and I've been happily signing a lot of books for Prentke-Romich, makers of the Big Box of Words. But we decided at the very beginning of all this book business that Schuyler would only sign books for individuals, either in person or sent to us or whatever. I like the idea of Schuyler's autograph rendering someone's book into a totally unique thing, different from any other in the world.

Just like Schuyler herself.

April 15, 2008

I have macho cred

Shut up, I do!

(By the way, the macho tv watching behavior I engage in is actually those police chase video shows. Seriously, if I'm channel surfing and I come across one of those shows, I am powerless to NOT watch it. Dash cam or helicopter POV, it doesn't matter. If loving the spectacle of drug-crazed teenagers driving stolen cars into oncoming traffic or over those spike strips that make their tires EXPLODE is wrong, I don't want to be right.)

Rockabye


Promo Proofs
Originally uploaded by girlsgonechild
One of the things that still catches me off guard is the fact that anyone gives a damn about what I think concerning books. Even now, in this age of consumer-driven content and Amazon reader reviews, the idea that my own credentials as a writer might give my opinion some added weight or validity doesn't naturally occur to me. When Karen Harrington, author of the very excellent Janeology made mention in an email of the review she had received "from a big-time memoirist", it actually took me a few seconds to realize that she was talking about me.

Nevertheless, when a book really does it for me, I try to put something together to express my feelings of gratitude to the author. And it really is gratitude. A good book is no small thing, nor (more to the point) is a bad one. When you watch a movie that you think is going to be good and it turns out to be a stinker, that's a good two hours of your life that you've tossed away. But when it's a book that leads you astray, the hours and even days that you've invested in it that you'll never get back. You'll be on your death bed one day, muttering to yourself, "If only I hadn't spent so much time reading all that fucking L. Ron Hubbard." You learn to cherish the good ones.

When I started reading Rebecca Woolf's Rockabye: From Wild to Child, I'd followed the marketing closely enough to know what I was supposed to be getting. I settled in to read another memoir of a party girl transitioning to parenthood while struggling to remain hip and cool. Which was certainly fine. Never having been actually cool myself, that transition was fairly straightforward for me, so I occasionally like to vicariously gank some cool from others.

By the time I finished Rockabye, I was looking at a different book altogether.

Simply put, this is a book about the tranformational power of a parent's love, the kind of love that can envelope you and warm you, but also consume and burn you. In bringing her son Archer into the world, Woolf begins to discover her own true heart and her own capacity for love and growth. Yes, part of that evolution involves leaving behind some of the party-all-the-time aspects of her youth, but the more important parts of herself, her independence and her insistence on doing things her own way, relying on her instincts, these are the pieces that she clings to.

I want to make something clear. Rebecca Woolf is a fantastic writer. She's open and honest, unblinkingly so at times, and yet her command of language and the near poetry of her wordplay feels like music. It's been a long time since I've gotten lost in language like that, just floating in someone's wordplay.

There are some striking parallels to Woolf's story and mine (or rather, to Archer's and Schuyler's), but I don't want to make too much of them. I would recommend her book to anyone who liked mine, if only because of some of those parallels, but honestly, I'd rather recommend Rockabye for no other reason than I found it to be a viscerally satisfying read. At its best, it feels like a gift, and it's at its best a lot.

I think you'll like this book. I'm pretty sure most of you will. Rebecca Woolf's the writer that I wish I was, and that's the truth.

Thank you for choosing me to mother you. Thank you for sneaking in through my window and saying "Boo! Here I am!" Thank you for stirring and purring and screaming and crying and laughing and talking and standing and jumping. You are my exclamation point in a world of dot-dot-dots. You are my star in a sky muted by city lights. You are my sun. My son. My sun.

Rebecca Woolf, "Rockabye: From Wild to Child"

April 10, 2008

Things that give me pause in a busy world


February 2000
Originally uploaded by Citizen Rob
I just wanted to quickly post and say that I'm alive and well, just a little busy and getting caught up. We received a visit from Fox 26 Houston reporter Greg Groogan, who spent some time with Schuyler and Julie and myself, both here at the apartment and at Schuyler's school. I'm told that his story will probably run in early May and may be picked up by affiliates in different parts of the country. In your town, too? Well, perhaps!

It felt like a really good interview; Greg's got a lot of experience with special needs kids, both personally and professionally, and it absolutely showed. I've talked to a variety of reporters since the book came out, and some of them were exceptionally sensitive and good, but with Greg, it was almost disconcerting, being interviewed by someone who really gets it. I'm curious as to how it's going to turn out; I suspect it's going to be outstanding. When we were doing the actual interview, I almost got a little weepy a few times. Not he-manly at all, I know. I suspect Greg was slipping estrogen into my water when I wasn't looking.

There's so much I want to talk about in more depth, such as the fact that I did a little book-for-movie exchange with Dan Habib, the father and filmmaker behind the brilliant documentary Including Samuel. I'll have much more to say about this, but for now, let me simply say that if you have any feelings or questions about inclusion and mainstreaming for special needs kids, you really do owe it to yourself to see his film. We're not in 100% lockstep agreement (you can probably imagine how I feel about the page in the film notes called "Words Matter", about person-first language), but we come to the same conclusions about the benefits of inclusion for these kids. Not just for my kids, but for yours, too. See this film if you get the opportunity, even if you find yourself opposed to inclusion education. Or especially if you're opposed to it, really.

In my book, I mention the polymicrogyria online support groups that I follow. I never contribute to them, probably out of something akin to misplaced guilt for Schuyler's comparatively good fortune, but I read them religiously. In Schuyler's Monster, I wrote about the heartbreak when a parent comes on the forum and reports the death of their child. There was one a few days ago; I showed it to Greg when he was here, and I think it made a powerful impression on him. Well, of course it did. If you're not touched by reading a parent's words as they report the death of their three year-old as a result of repeated, nasty seizures, there's something dead in your chest. You might want to go have that checked by a physician.

How does a parent watch their child die? How do they make peace with that, with their seemingly cruel or indifferent God and a world with such monsters in it? How do you bury your own son or daughter? People have been telling us how brave and how strong we are, but that's a world of brave and strong that I've never lived in, and do not believe I am capable of. I don't breathe the air on that planet. People have said that God never gives you anything that you can't handle, and I'm here to tell you that's the worst kind of bullshit-on-a-stick there is.

Compared to the Godzilla-like monsters that snatch up little babies and consume them before their heartbroken parents' eyes, Schuyler's is the fucking Cookie Monster. And that's good enough for me, thank you very much.

April 5, 2008

The John McMullen Show

I survived my first live radio experience with a minimum of anxiety this week. It was a longer interview than I've done before, and a little light on laughs, but he asked some questions that were different from past interviews, so that shook things up a little. Overall, I think the interview went pretty well.

Sadly, there were some weird technical issues that made the actual broadcast almost unlistenable. For some reason, the levels on my input kept getting louder and softer, over and over, as if I were walking around waving the phone like a maniac. In fact, I was sitting at my desk at work, with a minimum of maniacal gesturing, so I can only assume that there was something about my phone that was sabotaging the call. Stupid phone.

I did manage to get a clean copy from a nice person out there, and I went into iMovie and futzed around with the levels to try to minimize some of the weirdness. It still sounds a little strange, but I think it's at least listenable now.

Anyway, here it is.