Okay, so let's talk about People First Language.
I've seen it presented as a sort of universal truth, as if the rightness of People First Language is a given, with little room for argument. People First Language must be used, I read time and time again, like a moral imperative. The heartfelt and dedicated advocates of People First Language want very much for it to be accepted as a standard practice. Indeed, they often insist on it. But it's not universally accepted, although people who find it troubling are often nervous about discussing why. I'm a little nervous about writing this, to tell the truth, and we all know what an ass I can be.
The idea behind People First Language is simple, and inherent in the name of the concept. It puts the person first, allowing their basic existence to define them before their disability. People First Language describes what the person has, but not who that person is. By these rules, I am not a diabetic. I am a guy who has diabetes. The thinking behind People First Language says that identifying a person by their diagnosis can generate fear and pity, and works against the goal of inclusion. People First Language grants a person dignity, the thinking goes, by blunting the impact of their diagnosis on that person's self-image, and also in how they are perceived by the world.
"It's not 'political correctness,'" writes People First Language advocate Kathie Snow, "but good manners and respect."
Perhaps. I do see the point, and insofar as I think these kinds of perceptions are important issues, I can see some of the benefits of People First Language. I don't want Schuyler to be hurt by the world around her, and I certainly don't want her disability to make her feel like there's something wrong with her.
But here's the thing. As hard as it may be to admit this, there is something wrong with her. And admitting that she's broken on some level is difficult, and it feels harsh. But it's a harshness that comes from somewhere else, from whatever power you think hands out that kind of Very Special Gift. God if you believe in him, Fate if you don't, or just random shitty luck if that's how you roll. And the thing that it's easy to miss, because the idea breaks my heart too, is that no one is more aware of Schuyler's disability than Schuyler herself. When you think about it, that seems obvious, but for those of us who love her and care about her, it might be much easier to accept if we could adopt language that takes some of the sting out of her reality.
People First Language attempts to soften the language that we use to describe disability, and I understand why that's tempting. But in doing so, it doesn't blunt the monsters, not even a little. If you say, as People First Language instructs, that a paraplegic is NOT confined to a wheelchair or is NOT wheelchair-bound, but instead refer to them as "an individual who uses a wheelchair", you have taken away that wheelchair's power over that person in perception only. It even implies choice, at least in my opinion. I use things, and I use parts of myself, with intent. I don't think I'd say I use my heart, or my kidneys, because I am not given a choice, but I do use my legs. I choose to use them, and I can choose not to.
That sounds like I'm being obvious and glib, but it bothers me, and for some very real reasons. Because when you take away responsibility from the monster, who are you going to give it to? When you say that a person uses a wheelchair, you are setting up ownership of that disability. The monster doesn't have you. You have the monster.
But do we really want to hand ownership of that disability to a child who is struggling to understand their place in the world? Does handing responsibility for a disability over to the child give them an unreasonable sense of their own role in the possession of that disability? If you're using a wheelchair, then why not just stop? If that sounds silly to you, ask a now-grown child of divorced parents if they still, even if only in their secret hearts, take some measure of responsibility for their parents' breakup. Ask an adult with a disability if they ever wondered as kids what they did to deserve their situation. Ask them if they ever wonder that now.
If Schuyler isn't "non-verbal" but instead "communicates with an assistive technology device", then why? Why would she do that? If Schuyler doesn't feel like she is in the clutches of a monster to whom she brings the fight every day, that's great and my biggest dream made real. But if she then comes to the conclusion that she owns that lack of speech, then what can be the reason for its persistence? Is she not trying hard enough? Why isn't she fixing the issue herself? If she's not broken, then what's the problem? Lack of motivation? Is she simply not good enough? Not strong enough, or smart enough, or brave enough?
Schuyler as the victim (another word forbidden by People First Language) of Fate and its monster minion, as sad as that may sound, is infinitely preferable to Schuyler as the product of her own subtly-implied failure. I simply won't have it, any more than I'll have the idea of "acceptance" stand in the way of her hard work, and of ours. To my thinking, People First Language sets up an unreasonable expectation, taking the responsibility away from unfair forces at work in the world and instead laying it squarely at the feet of the very last people in the world who deserve to wonder if they somehow had this coming.
And don't even get me started on the ridiculous and unwieldy term "nondisabled" to describe neurotypical or "normal" people. That should offend anyone who loves the English language.
Listen. I get why people use People First Language. I understand the push to bring sensitivity to an often cold world. That's something I fight for as much as anyone else, after all. I wrote an entire goddamn book about it. But please try to understand, people. Don't just try to make it feel better. Don't blur the lens, don't make pretty words do the duty once performed by ugly ones.
"Retard" is an offensive term, I think we can all agree. But in its own way, I find "differently abled" or even "special" to be far worse, because they minimize the struggle. They allow the rest of us to sigh and wipe away a tear while we watch some very touching report on the Today Show, and then say "Wow, thank you Meredith, for showing me the story of that brave little trouper!" And then we go on with our lives, knowing that someone is watching out for that precious little angel. Someone like Jesus, perhaps, or one of his dedicated soldiers on earth.
Or someone like me. Or you. Or no one at all, no one except the person who lives their life confined to a wheelchair or suffering from a debilitating condition that makes a nightmare out of the things that you and I take for granted, the everyday tasks and activities that give us our humanity, and can rob us of it when they are taken away.
I helped Schuyler take a preliminary eye test today, in anticipation of an hour-long appointment later this week for the glasses that she'll apparently be getting soon. I held her device for her while she identified the letters on the wall that she could read. She did a great job, and I was incredibly proud of her. She's making her way in the world, and she'll continue to do so with determination and enthusiasm and even optimism, but she'll also do it with a big dose of "fuck you" when needed. And she's not going to get that from People First Language. Kind words aren't going to open any doors for her, not a one. They might simply make her feel like a failure for being unable to open them herself.
Ultimately, People First Language feels to me like it exists not so much to help broken children like Schuyler, most of whom I suspect are tougher and more pragmatic than the people who love them perhaps realize. I think it works mostly for the people around them, those of us who aren't afflicted and yet lead lives forever changed by disability.
People First Language probably makes that life a little easier for the rest of us to bear, but honestly, I'm not sure it should be easier for us. In that respect, I'm not convinced that People First Language is putting the right people first.
August 19, 2008
August 9, 2008
Speechificationalismness
Okay, I put my keynote address to the Assistive Technology Cluster Conference online.
Please keep in mind that it was delivered to a gathering of special education teachers, speech pathologists, occupational and physical therapists, school administrators and some parents of kids using assistive technology. It was also written with the (probably safe) assumption that most of them had never read the book or this blog, so there's material that may obviously seem familiar to you.
Oh, and also, I had a time slot of over an hour, so if it seems long to you as a reader, imagine how I felt. That's a lot of jabbering for one old man.
Please keep in mind that it was delivered to a gathering of special education teachers, speech pathologists, occupational and physical therapists, school administrators and some parents of kids using assistive technology. It was also written with the (probably safe) assumption that most of them had never read the book or this blog, so there's material that may obviously seem familiar to you.
Oh, and also, I had a time slot of over an hour, so if it seems long to you as a reader, imagine how I felt. That's a lot of jabbering for one old man.
August 8, 2008
Monster Slayers' Ball
Do you want to know a moment when this whole fancy pants book thing felt a little extra real recently? When I made a joke and about five hundred people laughed.
I gave the keynote address at the 2008 Assistive Technology Cluster Conference in Richardson, Texas last week. This is something that has been in the works for a while, and I was excited about it, in a "they want me to speak for how long?" sort of way. Excited, with a "good thing a wore my brown pants" element of terror mixed in.
I don't want to sound like I am tooting my own horn here, but honestly, I think it went really well. They laughed at my jokes (Looking for an easy laugh when talking to special educators? Make fun of No Child Left Behind...), almost no one left while I was talking, no one booed or threw anything at me, and when it was over, some of the people who came up to talk to me had been crying. There's nothing like seeing someone's runny mascara to make you feel like you got it right as a writer. I was more concerned about my delivery than the actual text, but I got through it without stammering too much or dropping any random F-bombs, so all in all, I'm pleased with how it went. Perhaps I'll put it online.
(Edited to add: Done.)
As is usual with this book and the appearances we've made, however, the real star was Schuyler. I put together a PowerPoint presentation (actually, on Apple's very cool Keynote software; imagine Powerpoint's hotter, sluttier sister) that was heavy on the Schuyler images, and that was a wise, if not particularly unexpected, move on my part. When I mentioned Schuyler's ability to communicate her defiance without words, the image on the three big screens got what was probably the best reaction of the whole speech. As hard as I work to represent her in my writing and in my advocacy, Schuyler speaks for herself best of all.
When my speech was over, the organizer of the conference invited Schuyler to come up to the front. In this huge room full of adults, Schuyler looked tiny and fragile to me, but she strode to the front without hesitation in her little black dress and newly-reddened hair, took the microphone and said, with confidence and almost comprehensibly, "Hi everyone!"
And THAT, my friends, was the best part of my keynote address.
The conference itself was fantastic, and very eye-opening for us. They gave us a table in the too-small exhibitors' hall, where we signed books and met teachers and parents and, most importantly, other people who were using assistive technology like Schuyler's Big Box of Words. These were young people with disabilities much more severe than Schuyler's, to the point that they had to struggle many times just to put their words in order. And yet, I don't think I can adequately describe how powerfully affecting it was to watch them navigate on their devices and communicate in full sentences, with complexity and nuance and humor. It gave me, and Schuyler most of all, a lot to consider where her own device usage is concerned.
One of the most fascinating parts of the conference for us was seeing exactly how much work is being done by some very smart people to advance the technology that kids like Schuyler are using. Prentke Romich, makers of the Big Box of Words, were well-represented, as usual. I'm always amazed at the people who work for that company, not just by how smart and committed they are to their work, but also just by the humor and confidence they exude. Two of their reps were device users themselves, and they were kind enough to come talk to Schuyler from time to time on their devices. You can probably imagine how weepy I became, on more than one occasion.
There were other companies represented, and a lot of very innovative technology on display. I came away with a lot of ideas and thoughts, some of which I'm going to share with PRC soon. The whole thing made me think about this in whole new ways.
But most of all, the thing I took away from this conference was an appreciation for the work that all these people are doing. Teachers, therapists, administrators, parents, advocates, all of them. When I looked out at that audience, the thing I felt most of all was humbled (and how often does THAT happen?). I was standing in front of the people who have made it their life's work to help kids like Schuyler.
Early in my speech, I said:
I've learned so much over the past few years, most of it about myself and my own capabilities, and all of it from Schuyler. Being there in front of those amazing people and being able to share my perspective with them was one of the singular honors of my life. And that's the truth.
I gave the keynote address at the 2008 Assistive Technology Cluster Conference in Richardson, Texas last week. This is something that has been in the works for a while, and I was excited about it, in a "they want me to speak for how long?" sort of way. Excited, with a "good thing a wore my brown pants" element of terror mixed in.
I don't want to sound like I am tooting my own horn here, but honestly, I think it went really well. They laughed at my jokes (Looking for an easy laugh when talking to special educators? Make fun of No Child Left Behind...), almost no one left while I was talking, no one booed or threw anything at me, and when it was over, some of the people who came up to talk to me had been crying. There's nothing like seeing someone's runny mascara to make you feel like you got it right as a writer. I was more concerned about my delivery than the actual text, but I got through it without stammering too much or dropping any random F-bombs, so all in all, I'm pleased with how it went. Perhaps I'll put it online.
(Edited to add: Done.)
As is usual with this book and the appearances we've made, however, the real star was Schuyler. I put together a PowerPoint presentation (actually, on Apple's very cool Keynote software; imagine Powerpoint's hotter, sluttier sister) that was heavy on the Schuyler images, and that was a wise, if not particularly unexpected, move on my part. When I mentioned Schuyler's ability to communicate her defiance without words, the image on the three big screens got what was probably the best reaction of the whole speech. As hard as I work to represent her in my writing and in my advocacy, Schuyler speaks for herself best of all.
When my speech was over, the organizer of the conference invited Schuyler to come up to the front. In this huge room full of adults, Schuyler looked tiny and fragile to me, but she strode to the front without hesitation in her little black dress and newly-reddened hair, took the microphone and said, with confidence and almost comprehensibly, "Hi everyone!"
And THAT, my friends, was the best part of my keynote address.
The conference itself was fantastic, and very eye-opening for us. They gave us a table in the too-small exhibitors' hall, where we signed books and met teachers and parents and, most importantly, other people who were using assistive technology like Schuyler's Big Box of Words. These were young people with disabilities much more severe than Schuyler's, to the point that they had to struggle many times just to put their words in order. And yet, I don't think I can adequately describe how powerfully affecting it was to watch them navigate on their devices and communicate in full sentences, with complexity and nuance and humor. It gave me, and Schuyler most of all, a lot to consider where her own device usage is concerned.
One of the most fascinating parts of the conference for us was seeing exactly how much work is being done by some very smart people to advance the technology that kids like Schuyler are using. Prentke Romich, makers of the Big Box of Words, were well-represented, as usual. I'm always amazed at the people who work for that company, not just by how smart and committed they are to their work, but also just by the humor and confidence they exude. Two of their reps were device users themselves, and they were kind enough to come talk to Schuyler from time to time on their devices. You can probably imagine how weepy I became, on more than one occasion.
There were other companies represented, and a lot of very innovative technology on display. I came away with a lot of ideas and thoughts, some of which I'm going to share with PRC soon. The whole thing made me think about this in whole new ways.
But most of all, the thing I took away from this conference was an appreciation for the work that all these people are doing. Teachers, therapists, administrators, parents, advocates, all of them. When I looked out at that audience, the thing I felt most of all was humbled (and how often does THAT happen?). I was standing in front of the people who have made it their life's work to help kids like Schuyler.
Early in my speech, I said:
It might be the most striking difference between our experience with the world of broken children and yours. As special educators and experts in assistive technology, you have sought out the monsters. You’ve armed yourselves with the knowledge and the tools to fight them, and you’ve gone into battle with your armor in place. For parents, the monsters have found us, in most cases sitting by the campfire in ignorant bliss, totally unprepared.
There’s a transition that special needs parents go through, and it’s one that I suspect never completes itself entirely. We go from seeing sad stories about kids with disabilities on television and saying "I can’t even begin to imagine how those parents deal with that" to becoming the parents who face it with our kids and for our kids. We learn quickly to conceal our fear, which is very great, and our self-doubts, which are many. We take hold of whatever we need in order to find that extra strength, whether it’s God or friends and family or a good stiff drink, and we draw our rubber swords. When we get to the battlefield, we find… you. You’re already there, our generals and our scouts, and you know the lay of the land. We’re not ready when we get there, not quite, but we will be soon enough. Once we get past our denial and our mourning for the child we always thought we’d have, we devote ourselves to the complicated, broken but equally wonderful child in its place. No one in the world is a quicker study than the special needs parent.
I've learned so much over the past few years, most of it about myself and my own capabilities, and all of it from Schuyler. Being there in front of those amazing people and being able to share my perspective with them was one of the singular honors of my life. And that's the truth.
August 6, 2008
The girl in the window
The Girl in the Window (St. Petersberg Times)
I don't have much to say about this, really. I'm not sure what there is to say. But I thought this was important, and if you trust my judgment and if you have ever been touched by Schuyler and the strange, internal world that she sometimes occupies but now has the tools to leave when she wants, then please go read this story, of a little girl who lives in that world permanently, and the horrible reason she got there in the first place.
(via Dooce)
-----
UPDATE, 8/13 - They've posted a follow-up article.
I don't have much to say about this, really. I'm not sure what there is to say. But I thought this was important, and if you trust my judgment and if you have ever been touched by Schuyler and the strange, internal world that she sometimes occupies but now has the tools to leave when she wants, then please go read this story, of a little girl who lives in that world permanently, and the horrible reason she got there in the first place.
(via Dooce)
-----
UPDATE, 8/13 - They've posted a follow-up article.
August 3, 2008
Passing of a Perpetual Exile
(1918-2008)
I've always had a deep love of Russian culture and history, and I have always counted three great contemporary Russians among my own personal heroes. Dmitri Shostakovich died in 1975, and Mstislav Rostropovich died last year. News from Russia tonight; Aleksandr Solzhenitsyn has died at the age of 89.
I won't go into the particulars of Solzhenitsyn's legacy. The New York Times obituary I linked yo above is a pretty exhaustive one, and if you're not familiar with Solzhenitsyn, I hope you'll take some time to read it. Neither A Day in the Life of Ivan Denisovich nor especially The Gulag Archipelago are easy summer reads; indeed, I can't imagine very many people outside of Russia have read Gulag in its entirety. But you don't have to read much; like Holocaust history, the story of Stalinism (which hardly died with Stalin, or is dead even now) and the Russian terror state is probably too big for one person to encapsulate it. But Solzhenitsyn must have come close.
For me, there are two great chroniclers of the cruelty of life in the Soviet Union. Shostakovich showed us how it felt, and Solzhenitsyn told us how it was. The world is infinitely the poorer for his passing.
July 30, 2008
That one percent feels like a universal truth
When I've got some time, I'm going to write about the conference at which I spoke yesterday, which was an amazing and eye-opening experience, for Julie and me both but particularly for Schuyler.
Until then, however, I wanted to share something exceptional that I read this morning, a post on Jennifer Groneberg's blog. It seemed especially appropriate, given recent sobering events in the special needs community.
Among other things, it addresses fear, and does so in an unblinking way that really resonated with me. I am always happy to have the discussion about gentle terminology and inclusive language (which has come up again, not surprisingly), but this is a good example of exactly why I prefer direct language. Sometimes the monster is just plain scary, and calling it something besides a monster just doesn't do the job.
Thanks, Jennifer, for posting this.
Until then, however, I wanted to share something exceptional that I read this morning, a post on Jennifer Groneberg's blog. It seemed especially appropriate, given recent sobering events in the special needs community.
Among other things, it addresses fear, and does so in an unblinking way that really resonated with me. I am always happy to have the discussion about gentle terminology and inclusive language (which has come up again, not surprisingly), but this is a good example of exactly why I prefer direct language. Sometimes the monster is just plain scary, and calling it something besides a monster just doesn't do the job.
Thanks, Jennifer, for posting this.
July 26, 2008
"Hard times give me your open arms..."
Sometimes sadness feels distant, like Third World suffering. And then there are the times when it hits close to home.
Noted writer and special needs advocate Vicki Forman unexpectedly lost her son Evan this week. The subsequent torrent of sorrow and shock that have been moving through the online community of special needs parents and advocates speaks to the immediacy of Vicki's writing and the positive effect that she and her son have had on others who are trying to make their way in a world of silent monsters.
It also speaks to the quiet fear that so many of us carry through our lives. After I left a heartfelt but probably inadequate message on Special Needs Mama expressing my condolences, Vicki was kind enough to write to me. In her message, she mentioned the thing that we both knew already, the thing that all parents of special needs children know but rarely speak of, even amongst ourselves. It exists behind the inspirational stories and the moments that allow everyone to believe that strong people who fight the good fight will always triumph in the end. She referred to it as "a vulnerability that is unmentionable," and in Evan's case, it became more than he could bear.
It lurks, the biggest monster of them all. It watches and it waits, and sometimes it takes advantage of that moment of vulnerability. What it leaves behind in the short term is chaos. It leaves fear and a cold truth for those of us who live our lives, even on the best of days, casting brief but troubled looks over our shoulders. And for parents like Vicki, it leaves a pain that I can't even begin to imagine, although of course I've imagined it plenty over the last five years.
The thing is, however, it doesn't end there. People who have known me for years can attest that I am not the same person I was before Schuyler came into my life. Most parents are changed by their kids, but I'll go out on a limb just a bit and say that the parents of broken children are changed even more profoundly than most. Evan was just about Schuyler's age, and the years that Vicki and her family had with him have undoubtedly left them all different people than when they began this trip together. In Vicki's case, her writing and her advocacy over the years have allowed Evan to change a lot of people as well. I hope that when the pain has dulled a little bit, she'll see just how much he left behind, and what a legacy she has allowed for him.
As cliched as it may sound, that's how kids like Evan never die. Small comfort today, but true nonetheless.
---
Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752
Noted writer and special needs advocate Vicki Forman unexpectedly lost her son Evan this week. The subsequent torrent of sorrow and shock that have been moving through the online community of special needs parents and advocates speaks to the immediacy of Vicki's writing and the positive effect that she and her son have had on others who are trying to make their way in a world of silent monsters.
It also speaks to the quiet fear that so many of us carry through our lives. After I left a heartfelt but probably inadequate message on Special Needs Mama expressing my condolences, Vicki was kind enough to write to me. In her message, she mentioned the thing that we both knew already, the thing that all parents of special needs children know but rarely speak of, even amongst ourselves. It exists behind the inspirational stories and the moments that allow everyone to believe that strong people who fight the good fight will always triumph in the end. She referred to it as "a vulnerability that is unmentionable," and in Evan's case, it became more than he could bear.
It lurks, the biggest monster of them all. It watches and it waits, and sometimes it takes advantage of that moment of vulnerability. What it leaves behind in the short term is chaos. It leaves fear and a cold truth for those of us who live our lives, even on the best of days, casting brief but troubled looks over our shoulders. And for parents like Vicki, it leaves a pain that I can't even begin to imagine, although of course I've imagined it plenty over the last five years.
The thing is, however, it doesn't end there. People who have known me for years can attest that I am not the same person I was before Schuyler came into my life. Most parents are changed by their kids, but I'll go out on a limb just a bit and say that the parents of broken children are changed even more profoundly than most. Evan was just about Schuyler's age, and the years that Vicki and her family had with him have undoubtedly left them all different people than when they began this trip together. In Vicki's case, her writing and her advocacy over the years have allowed Evan to change a lot of people as well. I hope that when the pain has dulled a little bit, she'll see just how much he left behind, and what a legacy she has allowed for him.
As cliched as it may sound, that's how kids like Evan never die. Small comfort today, but true nonetheless.
---
Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752
July 23, 2008
On Michael Savage and Other Monsters
Before I begin, let's look at what exactly was said last week by Michael Savage, talk radio host and celebrated caveman:
I had no intention of addressing the whole Michael Savage issue here or anywhere else, mostly because what he said was pretty clearly stupid, but also for the simple reason that autism isn't my issue. I occasionally have disagreements with parents of autistic children, and in most cases it boils down to the fact that Schuyler is not autistic. Her condition does not in any way manifest itself like autism, not even her lack of speech, and my beliefs in how she should be cared for, how I refer to her condition and my expectations for her future are completely different from theirs. I have the utmost respect for these parents, and I like to think that the fight I bring on Schuyler's behalf will benefit them just as much. But still. Not my fight, not directly, anyway.
But then I followed a link that was showing up in my stats, and I found a discussion of Savage's remarks on a parenting forum. I found the link back to my blog, and to my irritation, it was in a post by someone who, while disdaining the manner in which Savage expressed his opinion, nevertheless defended his point about how kids are supposedly being over-diagnosed with autism by pointing out that Schuyler was originally misdiagnosed as being on the autism spectrum. You may be reading this blog for the first time right now, as a result of following that link.
So let me say a few things briefly and clearly. First of all, yes, it is true that Schuyler was misdiagnosed, by the Child Study Center at the Yale Medical School, with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS, or as I liked to call it, for its vague and unhelpful description, "PDD-WTF"), an autism spectrum disorder.
But I also think it's important to note that Schuyler's actual condition, Bilateral Perisylvian Polymicrogyria, is extremely rare, with perhaps as few as a thousand identified cases worldwide, and without the MRI that Schuyler eventually received, there was no way to identify what her monster really was. It was unlikely, even at Yale, that anyone was going to immediately get it right, particularly without a brain scan. Furthermore, we pushed for more tests when that diagnosis felt unsatisfactory, and those tests were granted without any resistance because her doctors agreed with us. Her misdiagnosis only stood for a few months, and was suspect from the beginning.
In other words, I don't think Schuyler's misdiagnosis is very helpful anecdotally. Are children being diagnosed prematurely with autism spectrum conditions? I have no idea; my kid isn't autistic, and even when she received that diagnosis, I don't think anyone ever seriously thought she was. I can't speak to how autism is being identified by doctors.
I do think, however, that it is important to realize that yes, autism is a serious, legitimate medical condition and one that affects thousands of families in ways that I can't even begin to fathom. Furthermore, I can't imagine there are really non-deranged people out there who believe otherwise. If there are people out there ready to put forth an intelligent argument in defense of that position, Michael Savage is not one of them. He's a buffoon, and I'm pretty sure he knows it.
Having said that, I don't believe he should be silenced for expressing his opinion. Typically, free speech only truly requires our democracy's defense when it is denied to the assmonkeys of the world; logical or popular positions (and why are they so rarely one and the same?) can usually take care of themselves.
Still, it's nice to know that sometimes the marketplace responds appropriately.
SAVAGE: Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden -- why was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], "When the nurse looks at you, you go [fake cough], 'I don't know, the dust got me.' " See, everyone had asthma from the minority community. That was number one.
Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.
What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."
Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." The worst thing he said -- "Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry." That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have.
I had no intention of addressing the whole Michael Savage issue here or anywhere else, mostly because what he said was pretty clearly stupid, but also for the simple reason that autism isn't my issue. I occasionally have disagreements with parents of autistic children, and in most cases it boils down to the fact that Schuyler is not autistic. Her condition does not in any way manifest itself like autism, not even her lack of speech, and my beliefs in how she should be cared for, how I refer to her condition and my expectations for her future are completely different from theirs. I have the utmost respect for these parents, and I like to think that the fight I bring on Schuyler's behalf will benefit them just as much. But still. Not my fight, not directly, anyway.
But then I followed a link that was showing up in my stats, and I found a discussion of Savage's remarks on a parenting forum. I found the link back to my blog, and to my irritation, it was in a post by someone who, while disdaining the manner in which Savage expressed his opinion, nevertheless defended his point about how kids are supposedly being over-diagnosed with autism by pointing out that Schuyler was originally misdiagnosed as being on the autism spectrum. You may be reading this blog for the first time right now, as a result of following that link.
So let me say a few things briefly and clearly. First of all, yes, it is true that Schuyler was misdiagnosed, by the Child Study Center at the Yale Medical School, with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS, or as I liked to call it, for its vague and unhelpful description, "PDD-WTF"), an autism spectrum disorder.
But I also think it's important to note that Schuyler's actual condition, Bilateral Perisylvian Polymicrogyria, is extremely rare, with perhaps as few as a thousand identified cases worldwide, and without the MRI that Schuyler eventually received, there was no way to identify what her monster really was. It was unlikely, even at Yale, that anyone was going to immediately get it right, particularly without a brain scan. Furthermore, we pushed for more tests when that diagnosis felt unsatisfactory, and those tests were granted without any resistance because her doctors agreed with us. Her misdiagnosis only stood for a few months, and was suspect from the beginning.
In other words, I don't think Schuyler's misdiagnosis is very helpful anecdotally. Are children being diagnosed prematurely with autism spectrum conditions? I have no idea; my kid isn't autistic, and even when she received that diagnosis, I don't think anyone ever seriously thought she was. I can't speak to how autism is being identified by doctors.
I do think, however, that it is important to realize that yes, autism is a serious, legitimate medical condition and one that affects thousands of families in ways that I can't even begin to fathom. Furthermore, I can't imagine there are really non-deranged people out there who believe otherwise. If there are people out there ready to put forth an intelligent argument in defense of that position, Michael Savage is not one of them. He's a buffoon, and I'm pretty sure he knows it.
Having said that, I don't believe he should be silenced for expressing his opinion. Typically, free speech only truly requires our democracy's defense when it is denied to the assmonkeys of the world; logical or popular positions (and why are they so rarely one and the same?) can usually take care of themselves.
Still, it's nice to know that sometimes the marketplace responds appropriately.
July 20, 2008
Big Box of Inappropriate
Has it really been almost two weeks? I apologize for the silence. I've been working on a lot of things and it's kept me busy. "What are you writing these days?" I get asked a lot. Well, I have not one, not two but three speeches to write this summer, including a keynote address for this conference on technology in special education in which I have an hour and a half allocated for whatever I plan to say. An hour and a half. I predict lots of Powerpoint and perhaps a puppet show.
Summer with Schuyler continues to be sort of hit and miss, to be honest, although it's still a vast improvement over previous summers when she was being watched by snotty know-it-all college student interns working for the school district. (I still remember the 19 year-old tool who, when told that Schuyler needed to be encouraged to use her device, disagreed and backed up his position with "I am a psychology major...")
As much as she must love hanging out in the office with her forty year-old father, she's missing her school friends and it's beginning to show. We keep trying to arrange play dates with some of her AAC classmates, but everyone's busy during the summer (what is this word "vacation" of which you speak?) so it's hard to put together. She's got her cousins and a few neurotypical kids that she sees now and then, but I think that as much fun as she has, it still serves as a reminder of her brokenness, and as an eight year-old, she's not as in love with being different as she might have been once.
We've been trying to learn a new word in sign language every day, and she's shown some excitement for that. I think part of her enthusiasm has come from the fact that I've been letting her choose the words, which has led to such useful words for everyday use as "robot" and "bat" (on the day The Dark Knight opened, and no, I didn't take her to see it). Now that she's beginning to enjoy learning new words, we may start trying to sneak some useful ones in from time to time. Not that "robot" isn't a solid daily vocabulary tool.
The Big Box of Words remains her primary form of communication, however, or at least our main focus. One way of firing up her enthusiasm for it has been to add things to it that she and I say when we're teasing each other, which is, well, pretty often. We already added a little rhyme from my childhood that I taught her a while back to say when people eyeball her in public, so her device will now say "Stare stare, booger bear. Take a picture, I don't care." (When she's old enough, perhaps she'll replace it with "What are you looking at, assmonkey?") At lunch yesterday (at a Mexican restaurant, naturally), she asked me to add "Beans, beans, the magical fruit. The more you eat, the more you toot." Clearly, I am a fine, fine influence on my child. Her teachers are going to be so proud.
Speaking of which, last week Schuyler wanted to use her device to call me a "monkey fart" (honestly, I don't know why Julie teaches her these horrible things), and lo and behold, the Big Box of Words did not have the word "fart" programmed into it. You can probably see where this is going.
Twenty minutes later, Schuyler had a new subdirectory on the BBoW listing words associated with, well, bodily functions. Say what you will about the beauty of language and creating an appropriate and enriching environment for a child, but come on. An eight year old who can't say "fart" or "burp" or "booger" is not a complete human.
And honestly, just assigning icons to her new words made it all worthwhile.
Did I mention that I'm the keynote speaker at a professional educators' conference? I did.
Summer with Schuyler continues to be sort of hit and miss, to be honest, although it's still a vast improvement over previous summers when she was being watched by snotty know-it-all college student interns working for the school district. (I still remember the 19 year-old tool who, when told that Schuyler needed to be encouraged to use her device, disagreed and backed up his position with "I am a psychology major...")
As much as she must love hanging out in the office with her forty year-old father, she's missing her school friends and it's beginning to show. We keep trying to arrange play dates with some of her AAC classmates, but everyone's busy during the summer (what is this word "vacation" of which you speak?) so it's hard to put together. She's got her cousins and a few neurotypical kids that she sees now and then, but I think that as much fun as she has, it still serves as a reminder of her brokenness, and as an eight year-old, she's not as in love with being different as she might have been once.
We've been trying to learn a new word in sign language every day, and she's shown some excitement for that. I think part of her enthusiasm has come from the fact that I've been letting her choose the words, which has led to such useful words for everyday use as "robot" and "bat" (on the day The Dark Knight opened, and no, I didn't take her to see it). Now that she's beginning to enjoy learning new words, we may start trying to sneak some useful ones in from time to time. Not that "robot" isn't a solid daily vocabulary tool.
The Big Box of Words remains her primary form of communication, however, or at least our main focus. One way of firing up her enthusiasm for it has been to add things to it that she and I say when we're teasing each other, which is, well, pretty often. We already added a little rhyme from my childhood that I taught her a while back to say when people eyeball her in public, so her device will now say "Stare stare, booger bear. Take a picture, I don't care." (When she's old enough, perhaps she'll replace it with "What are you looking at, assmonkey?") At lunch yesterday (at a Mexican restaurant, naturally), she asked me to add "Beans, beans, the magical fruit. The more you eat, the more you toot." Clearly, I am a fine, fine influence on my child. Her teachers are going to be so proud.
Speaking of which, last week Schuyler wanted to use her device to call me a "monkey fart" (honestly, I don't know why Julie teaches her these horrible things), and lo and behold, the Big Box of Words did not have the word "fart" programmed into it. You can probably see where this is going.
Twenty minutes later, Schuyler had a new subdirectory on the BBoW listing words associated with, well, bodily functions. Say what you will about the beauty of language and creating an appropriate and enriching environment for a child, but come on. An eight year old who can't say "fart" or "burp" or "booger" is not a complete human.
And honestly, just assigning icons to her new words made it all worthwhile.
Did I mention that I'm the keynote speaker at a professional educators' conference? I did.
July 8, 2008
No Blue Fairy
The Big Box of Words has been such a positive thing for Schuyler and her future that I think I usually fail to give a completely balanced picture of the ups and downs that accompany her experience with assistive technology.
Of late, she's had something of a rough time with the BBoW. There are times, especially during the school year, when Schuyler really seems to dig the device and the very unique place she has in the world because of it. Lately, though, I think it's just pissing her off.
Part of the issue is summer. No school, no peer group of device users, and no structured classroom environment. Just her smelly old parents and lots of activities that are not even remotely BBoW-friendly. She loves to swim, for example; she has never willingly left the pool without at least a grumble or a plea for five more minutes. She'd stay in her swim suit all summer if she could, her device hidden safely away on dry land. For the Fourth of July, we went camping with my brother's family, and I can count the times I saw her use the device on one finger. I know because I made her do it, and while it wasn't exactly under protest, she definitely did the bare minimum required.
We've decided to try to vary her techniques a little, stepping back up to the sign language plate again, for example, as a parallel technique alongside the device. Schuyler's condition limits her fine motor abilities in her hands and thus keeps her from being truly skilled at signing, but that never kept her from having real enthusiasm for it. She learned most of her signs from the early Signing Time videos, which I think I've discussed before, and now that they're on PBS, the DVR catches new episodes every now and then and we all sit down and learn them together. Her signing is limited by her own monster-stifled, clumsy fingers and by the limited number of people who can understand her. Nevertheless, signing still presents an elegant way to speak that the Big Box of Words simply can't match, at least at this point where she's still constructing sentences and thoughts at a necessarily slower, sometimes maddening pace. She understands the necessity of the device, but I think she sees the beauty of sign language in a way that I am only now appreciating myself.
Recently, Schuyler has begun to outwardly express her own awareness of her monster. She has this thing she does now to explain it, a whole story told in gestures and sign language. She gently touches her throat and shakes her head. She then touches her head with her finger (the sign for "think") and draws a line down to her mouth, signifying how the things she wants to say don't make the trip from her brain to her mouth. I like how she recognizes that her voice is broken, but her mind is working. It's important for her to know that her thoughts are there, and they are magnificent.
The thing about this little mimed explanation of Schuyler's condition, however, is that no one taught it to her. It's all hers. While some people worry about how to tell her what's wrong with her and how to explain it in gentle terms that won't bruise her delicate psyche ("Don't call her broken!"), Schuyler has figured out her own harsh reality by herself and expresses it without a hint of self-pity or trauma. Schuyler knows her monster better than any of us; it's presumptuous for anyone else, even me, to pretend we understand it, too, or to think that we can somehow tell her something about it that she doesn't already know on some visceral level.
Lately, Schuyler has balked a few times in public at using the Big Box of Words to answer other people's questions, and the sense that I get from her is that she may be starting to feel, if not embarrassed, at least self-conscious about it. Schuyler may delight in being a weird little girl, but only when it is on her terms. A speech output device still represents her very best (and possibly only) chance of being able to spontaneously communicate any kind of real expressive thought, but it remains an unnatural way for a little girl to speak. I suspect the day is coming, and soon, when her desire to be "normal" is going to cause some serious heartbreak for her.
There's one literary figure with whom I have always associated Schuyler, although to even say it aloud breaks my oft-broken old father's heart right in two.
In her own very unique way, Schuyler is Pinocchio.
Of late, she's had something of a rough time with the BBoW. There are times, especially during the school year, when Schuyler really seems to dig the device and the very unique place she has in the world because of it. Lately, though, I think it's just pissing her off.
Part of the issue is summer. No school, no peer group of device users, and no structured classroom environment. Just her smelly old parents and lots of activities that are not even remotely BBoW-friendly. She loves to swim, for example; she has never willingly left the pool without at least a grumble or a plea for five more minutes. She'd stay in her swim suit all summer if she could, her device hidden safely away on dry land. For the Fourth of July, we went camping with my brother's family, and I can count the times I saw her use the device on one finger. I know because I made her do it, and while it wasn't exactly under protest, she definitely did the bare minimum required.
We've decided to try to vary her techniques a little, stepping back up to the sign language plate again, for example, as a parallel technique alongside the device. Schuyler's condition limits her fine motor abilities in her hands and thus keeps her from being truly skilled at signing, but that never kept her from having real enthusiasm for it. She learned most of her signs from the early Signing Time videos, which I think I've discussed before, and now that they're on PBS, the DVR catches new episodes every now and then and we all sit down and learn them together. Her signing is limited by her own monster-stifled, clumsy fingers and by the limited number of people who can understand her. Nevertheless, signing still presents an elegant way to speak that the Big Box of Words simply can't match, at least at this point where she's still constructing sentences and thoughts at a necessarily slower, sometimes maddening pace. She understands the necessity of the device, but I think she sees the beauty of sign language in a way that I am only now appreciating myself.
Recently, Schuyler has begun to outwardly express her own awareness of her monster. She has this thing she does now to explain it, a whole story told in gestures and sign language. She gently touches her throat and shakes her head. She then touches her head with her finger (the sign for "think") and draws a line down to her mouth, signifying how the things she wants to say don't make the trip from her brain to her mouth. I like how she recognizes that her voice is broken, but her mind is working. It's important for her to know that her thoughts are there, and they are magnificent.
The thing about this little mimed explanation of Schuyler's condition, however, is that no one taught it to her. It's all hers. While some people worry about how to tell her what's wrong with her and how to explain it in gentle terms that won't bruise her delicate psyche ("Don't call her broken!"), Schuyler has figured out her own harsh reality by herself and expresses it without a hint of self-pity or trauma. Schuyler knows her monster better than any of us; it's presumptuous for anyone else, even me, to pretend we understand it, too, or to think that we can somehow tell her something about it that she doesn't already know on some visceral level.
Lately, Schuyler has balked a few times in public at using the Big Box of Words to answer other people's questions, and the sense that I get from her is that she may be starting to feel, if not embarrassed, at least self-conscious about it. Schuyler may delight in being a weird little girl, but only when it is on her terms. A speech output device still represents her very best (and possibly only) chance of being able to spontaneously communicate any kind of real expressive thought, but it remains an unnatural way for a little girl to speak. I suspect the day is coming, and soon, when her desire to be "normal" is going to cause some serious heartbreak for her.
There's one literary figure with whom I have always associated Schuyler, although to even say it aloud breaks my oft-broken old father's heart right in two.
In her own very unique way, Schuyler is Pinocchio.
July 1, 2008
"A Good Read"
(I swear to God, I thought I mentioned this already. I believe it was in the Father's Day post that got scrapped when I wrote about Tim Russert instead. My brain is apparently turning into pudding. Welcome to thirty-ten. Now get off my lawn.)
A few weeks ago, Naomi Shulman, research chief at Wondertime Magazine, wrote a very nice recommendation for Schuyler's Monster titled "A Good Read". I was of course happy to get a good review; it sure beats the alternative of a bad one or even worse, none at all.
I was especially touched to get yet another positive mention in Wondertime because they've been so supportive and great about my book. They featured a lengthy excerpt back in their March issue, which is nice online but looked absolutely breathtaking in its print layout. I was also interviewed by Naomi for a follow-up interview on the website. Wondertime has been a good friend to me and my family from the very beginning.
It's especially nice to have this coming from Naomi, who was an exceptionally pleasant and professional interviewer and who has been following Schuyler's story since before her diagnosis. I keep discovering over and over again how deeply Schuyler has touched so many people, and how the connections she's made through her story circle back around to us again and again.
So thank you, Naomi. This means the world to me, and that's the truth.
A few weeks ago, Naomi Shulman, research chief at Wondertime Magazine, wrote a very nice recommendation for Schuyler's Monster titled "A Good Read". I was of course happy to get a good review; it sure beats the alternative of a bad one or even worse, none at all.
I was especially touched to get yet another positive mention in Wondertime because they've been so supportive and great about my book. They featured a lengthy excerpt back in their March issue, which is nice online but looked absolutely breathtaking in its print layout. I was also interviewed by Naomi for a follow-up interview on the website. Wondertime has been a good friend to me and my family from the very beginning.
It's especially nice to have this coming from Naomi, who was an exceptionally pleasant and professional interviewer and who has been following Schuyler's story since before her diagnosis. I keep discovering over and over again how deeply Schuyler has touched so many people, and how the connections she's made through her story circle back around to us again and again.
So thank you, Naomi. This means the world to me, and that's the truth.
June 29, 2008
Vox monstrum
Sunday mornings are usually pretty relaxed around here. We don't go to church, the Baby Jesus keeps us from having Chick-fil-A and neither of us ever work on Sundays, so we usually get up late and have a lazy breakfast around the apartment. It's nice; even if we've got lots to do, it can all wait.
The three of us were sitting on the bed in our pjs, and Schuyler had her Big Box of Words with her so she could tell us about the beach in Connecticut. This naturally led to the topic of mermaids, as most conversations with Schuyler eventually do. When, in the midst of our discussion, we informed her that a boy mermaid was actually a merman, she asked me to add it to her device. Julie left us to our programming fun.
While we were adding words and making changes to the device, Schuyler and I ended up somehow on the voice settings, where the BBoW user can select the voice that she wants to represent her. There are maybe a dozen different voices, male and female, but there's only one (named "Kit") that sounds specifically like a child's voice.
Kit has been Schuyler's voice all along, and in a weird sort of way, it has become her recognizable voice to me. When we were being interviewed for public radio a few months ago, Schuyler thought it would be funny to reset the voice settings so that instead of little kid Kit's voice, the box suddenly sounded like some kind of menacing robot invader from Mars. She thought it was great fun, of course, and I found the experience surprisingly upsetting. Kit had become Schuyler's voice to me, and in some respects at least a part of who she really is on a fundamental level.
This morning, as I showed her the different voices and how they could be tweaked by changing the rate of speed, the pitch and the variance of pitch (ranging from robotic to Shatneresque), Schuyler grew very interested. She pointed to the device, and then to herself. Since we were in the settings mode, she had to speak with her hands.
She held her hands far apart ("big"), drew her thumb across her cheek ("girl") and then pointed to her throat ("voice").
Schuyler wanted a big girl voice.
We've been trying to push her to use the device this summer and have met with success, at least much of the time. We've always encouraged her her to take ownership of the BoW, adding words and changing pronunciations at her request. Now she was asking for a major change, and one that was very, very personal, both for her as a user and for the rest of us who interact with her every day.
We sat and spent a good half hour going through the different choices, and she finally chose "Ursula", which we then tweaked to bring the pitch up to a slightly more girlish sound and to add a bit of lilt to its patterns. What she ended up with was a voice completely customized to her wishes.
Broken children grow up like everyone else, although perhaps in ways and via paths we never anticipate. Schuyler has a big girl voice now. I only wish the rest of her big girl transformations were going to be that easy.
The three of us were sitting on the bed in our pjs, and Schuyler had her Big Box of Words with her so she could tell us about the beach in Connecticut. This naturally led to the topic of mermaids, as most conversations with Schuyler eventually do. When, in the midst of our discussion, we informed her that a boy mermaid was actually a merman, she asked me to add it to her device. Julie left us to our programming fun.
While we were adding words and making changes to the device, Schuyler and I ended up somehow on the voice settings, where the BBoW user can select the voice that she wants to represent her. There are maybe a dozen different voices, male and female, but there's only one (named "Kit") that sounds specifically like a child's voice.
Kit has been Schuyler's voice all along, and in a weird sort of way, it has become her recognizable voice to me. When we were being interviewed for public radio a few months ago, Schuyler thought it would be funny to reset the voice settings so that instead of little kid Kit's voice, the box suddenly sounded like some kind of menacing robot invader from Mars. She thought it was great fun, of course, and I found the experience surprisingly upsetting. Kit had become Schuyler's voice to me, and in some respects at least a part of who she really is on a fundamental level.
This morning, as I showed her the different voices and how they could be tweaked by changing the rate of speed, the pitch and the variance of pitch (ranging from robotic to Shatneresque), Schuyler grew very interested. She pointed to the device, and then to herself. Since we were in the settings mode, she had to speak with her hands.
She held her hands far apart ("big"), drew her thumb across her cheek ("girl") and then pointed to her throat ("voice").
Schuyler wanted a big girl voice.
We've been trying to push her to use the device this summer and have met with success, at least much of the time. We've always encouraged her her to take ownership of the BoW, adding words and changing pronunciations at her request. Now she was asking for a major change, and one that was very, very personal, both for her as a user and for the rest of us who interact with her every day.
We sat and spent a good half hour going through the different choices, and she finally chose "Ursula", which we then tweaked to bring the pitch up to a slightly more girlish sound and to add a bit of lilt to its patterns. What she ended up with was a voice completely customized to her wishes.
Broken children grow up like everyone else, although perhaps in ways and via paths we never anticipate. Schuyler has a big girl voice now. I only wish the rest of her big girl transformations were going to be that easy.
June 25, 2008
Summer monsters
It's been a while since I've really had much to say here. I haven't been staying away because of any great tragedy. I've just felt, I don't know. Quiet, I suppose.
The early days of summer have been different this year, for the simple reason that we've elected to keep Schuyler at home with us rather than handing her over to another summer program. I feel like I got adequate practice writing angry emails to administrators last summer, after all. The one thing her summer programs have had in common for some time has been the lack of progress she's made on her Big Box of Words. When she was at the YMCA, she never used it because they were constantly playing hard and swimming and having fun being feral kids on the go go go. Last summer, she didn't use it because the people taking care of her were too busy searching for a quarter for the clue bus.
So now she spends her days with one of us, mostly me since my boss doesn't mind her coming in to the office. I think she actually brightens the place up when she's there; the associate dean went out of his way to tell me how much he enjoys hearing her playing in the next room. She brings in toys (sometimes her fairies, other times her big slobbery monsters) and draws and watches movies on my laptop, and the summer session at the university doesn't seem so ghostly. During the hour-long commute, she jabbers away and watches the world going by with interest.
The more time Schuyler and I spend together, the more conspiratorial we become, which is nice, at least for us. When she has her monsters in the car with us, she asks for me to play the "monster mix" I made for her on the iPod (consisting of music from monster movies like Cloverfield and King Kong and Jaws and War of the Worlds), and we drive along pretending to devour the people we see on the sidewalks.
"Daddy!" She says. "Eat that guy!" Which of course I do. When she eats that guy, she only eats half, handing me the rest. She's a very generous monster.
A few weeks ago, her cousins came to stay with us. One of them, almost exactly Schuyler's age, is a smart kid, almost scarily so in fact, but he's also trusting in a way that is perhaps unfortunate when he's got an uncle and a cousin who spend so much time trying to trick and scare each other. (For instance, he now believes that I know a deadly martial arts move called the Monkey Paw, which I can't teach to him because unlike me, he only has ten fingers. Something to think about if you are considering asking me to watch your kid.)
Schuyler invented something called the grass monster a few months ago, a krakenesque creature lurking under the surface of the lawn who will grab you if you walk on the grass. When her cousin came to stay, Schuyler played grass monster all weekend, and I fleshed out the story for him until the grass monster had reached legendary status in our house.
Once he returned to Arlington, he googled "grass monster" and "arlington" from time to time, and always bragged to me when I saw him that there wasn't a grass monster in Arlington. Thus, he was safe. So really, in my own defense, I think a case could be made that some things are just inevitable. (He called me yesterday morning to give me the news.)
Julie's summer has been a little rocky, mostly on account of her work situation. I've worked in a bookstore in the past, same as her, so I know how petty and ridiculous the environment can become, particularly during the slow summer months when people grow bored and restless.
Still, it pains me to watch her deal with a work environment that increasingly resembles nothing so much as junior high school, with a paycheck. I don't write much about her here, for reasons that have been made clear before, but here's what you need to know about Julie, something that people who truly get to know her already understand.
Julie works very hard to maintain a positive and friendly attitude when she's at work, not just having a professional attitude but being open and friendly and funny as well. When she finds herself having to guard herself against petty people taking advantage of that, it does more than cause her to come to work and behave like a retail automaton.
It takes away her refuge, a place where she can go to escape the fact that the light of her life, the little girl who means every bit as much to Julie as to me, is living a life under threat, where every perfect moment has possibilities hanging over it that could snatch everything away in a moment.
I recently read a report of another kid with polymicrogyria, this one closer to Schuyler's age, whose life was suddenly and cruelly snatched away by seizures, the ones that Schuyler has yet to suffer but which hang over this family like a cloud. The possibility of meeting that one last terrible monster isn't something for Schuyler to fear, but her peace belongs to her alone. I can't afford to drop my guard, ever.
And neither can Julie. I write so much about Schuyler's monster that no one ever forgets the thing I live in fear of. I wish the people in her life would remember Julie's anxiety, though. It's her monster, too.
The early days of summer have been different this year, for the simple reason that we've elected to keep Schuyler at home with us rather than handing her over to another summer program. I feel like I got adequate practice writing angry emails to administrators last summer, after all. The one thing her summer programs have had in common for some time has been the lack of progress she's made on her Big Box of Words. When she was at the YMCA, she never used it because they were constantly playing hard and swimming and having fun being feral kids on the go go go. Last summer, she didn't use it because the people taking care of her were too busy searching for a quarter for the clue bus.
So now she spends her days with one of us, mostly me since my boss doesn't mind her coming in to the office. I think she actually brightens the place up when she's there; the associate dean went out of his way to tell me how much he enjoys hearing her playing in the next room. She brings in toys (sometimes her fairies, other times her big slobbery monsters) and draws and watches movies on my laptop, and the summer session at the university doesn't seem so ghostly. During the hour-long commute, she jabbers away and watches the world going by with interest.
The more time Schuyler and I spend together, the more conspiratorial we become, which is nice, at least for us. When she has her monsters in the car with us, she asks for me to play the "monster mix" I made for her on the iPod (consisting of music from monster movies like Cloverfield and King Kong and Jaws and War of the Worlds), and we drive along pretending to devour the people we see on the sidewalks.
"Daddy!" She says. "Eat that guy!" Which of course I do. When she eats that guy, she only eats half, handing me the rest. She's a very generous monster.
A few weeks ago, her cousins came to stay with us. One of them, almost exactly Schuyler's age, is a smart kid, almost scarily so in fact, but he's also trusting in a way that is perhaps unfortunate when he's got an uncle and a cousin who spend so much time trying to trick and scare each other. (For instance, he now believes that I know a deadly martial arts move called the Monkey Paw, which I can't teach to him because unlike me, he only has ten fingers. Something to think about if you are considering asking me to watch your kid.)
Schuyler invented something called the grass monster a few months ago, a krakenesque creature lurking under the surface of the lawn who will grab you if you walk on the grass. When her cousin came to stay, Schuyler played grass monster all weekend, and I fleshed out the story for him until the grass monster had reached legendary status in our house.
Once he returned to Arlington, he googled "grass monster" and "arlington" from time to time, and always bragged to me when I saw him that there wasn't a grass monster in Arlington. Thus, he was safe. So really, in my own defense, I think a case could be made that some things are just inevitable. (He called me yesterday morning to give me the news.)
Julie's summer has been a little rocky, mostly on account of her work situation. I've worked in a bookstore in the past, same as her, so I know how petty and ridiculous the environment can become, particularly during the slow summer months when people grow bored and restless.
Still, it pains me to watch her deal with a work environment that increasingly resembles nothing so much as junior high school, with a paycheck. I don't write much about her here, for reasons that have been made clear before, but here's what you need to know about Julie, something that people who truly get to know her already understand.
Julie works very hard to maintain a positive and friendly attitude when she's at work, not just having a professional attitude but being open and friendly and funny as well. When she finds herself having to guard herself against petty people taking advantage of that, it does more than cause her to come to work and behave like a retail automaton.
It takes away her refuge, a place where she can go to escape the fact that the light of her life, the little girl who means every bit as much to Julie as to me, is living a life under threat, where every perfect moment has possibilities hanging over it that could snatch everything away in a moment.
I recently read a report of another kid with polymicrogyria, this one closer to Schuyler's age, whose life was suddenly and cruelly snatched away by seizures, the ones that Schuyler has yet to suffer but which hang over this family like a cloud. The possibility of meeting that one last terrible monster isn't something for Schuyler to fear, but her peace belongs to her alone. I can't afford to drop my guard, ever.
And neither can Julie. I write so much about Schuyler's monster that no one ever forgets the thing I live in fear of. I wish the people in her life would remember Julie's anxiety, though. It's her monster, too.
June 23, 2008
Sadness in seven words
Well, shit, piss, fuck, cunt, cocksucker, motherfucker, and tits.
Goodbye, George...
(Edited to add the explanatory link, which I seriously, SERIOUSLY can't believe I needed to do.)
June 17, 2008
Writing about writing about writing
Sorry I've been feeling sort of quiet these days, but you know how it goes. I have been talking to other people behind your back, however.
Over the weekend, I was part of a Father's Day article about blogging dads for the St. Paul Pioneer Press, "Dads join the parenting blog ranks". Those of you who hate the term "mommy blogger" can now hate on "daddy blogger", too.
I also did an interview for writer and artist Debbie Ridpath Ohi, whose excellent work you may recognize from the Schuyler's Monster website. It focuses mostly on the writing process, so you can decide for yourself whether I'm truly a fancy pants author, or if I just got incredibly lucky. I won't tell you where the smart money is.
Over the weekend, I was part of a Father's Day article about blogging dads for the St. Paul Pioneer Press, "Dads join the parenting blog ranks". Those of you who hate the term "mommy blogger" can now hate on "daddy blogger", too.
I also did an interview for writer and artist Debbie Ridpath Ohi, whose excellent work you may recognize from the Schuyler's Monster website. It focuses mostly on the writing process, so you can decide for yourself whether I'm truly a fancy pants author, or if I just got incredibly lucky. I won't tell you where the smart money is.
June 13, 2008
Sad Father's Day
I was all set to post something about Father's Day, and I might still do that. But I just found out that Tim Russert died today of an apparent heart attack.
I know we're going to hear a great deal about his contributions to the field of journalism, but the thing that I'll remember about Russert is that he wrote about fatherhood, both his life with his own dad and his relationship with his son, in a way that opened the door for other writers like myself who had something to say about being a father and a son, and what we're all trying to do in that role.
According to MSNBC:
Russert was a trustee of the Freedom Forum’s Newseum and a member of the board of directors of the Greater Washington Boys and Girls Club, and America’s Promise — Alliance for Youth.
In 1995, the National Father’s Day Committee named him “Father of the Year,” Parents magazine honored him as “Dream Dad” in 1998, and in 2001 the National Fatherhood Initiative also recognized him as Father of the Year.
Fathers have been pretty consistently marginalized in our societal narrative, but I think that is beginning to change, albeit slowly. Tim Russert was an agent of that change, although I suspect that all he really set out to do was write a love letter to his father (a personal mission I understand perfectly), and to give others a place to do the same. I truly regret the fact that I'll never have the opportunity to meet him, and to say thank you.
June 7, 2008
Reviewed in Brain, Child
A nice person sent me a scan of a review of Schuyler's Monster from the Summer 2008 issue of Brain, Child, which calls itself "the magazine for thinking mothers", although I supposed thinking fathers can read it too, as long as they don't fart or scratch or otherwise call attention to themselves.
Schuyler's Monster: A Father's Journey with His Wordless Daughter, by Robert Rummel-Hudson (St. Martin's Press, 2008). When the instructor of the Lamaze class that Rummel-Hudson attended with his pregnant wife said, "So the first thing the nurse will do is hand the new baby to you, mommies, so you can count their little fingers and toes..." Rummel-Hudson added, "And heads!" Weisenheimer moments like this pepper this making-of-a-father memoir and help leaven what could be a true tale of woe. Rummel-Hudson's daughter, Schuyler, was diagnosed at the age of three with polymicrogyria, a rare brain malformation that causes various developmental problems: the most frustrating, a lack of speech. Rummel-Hudson chronicles, with disarming frankness, the experience of parenting a child no one knows how to help. His own journey includes marital problems and fights with school administrators reluctant to work with Schuyler. His family's trials haven't extinguished Rummel-Hudson's smartass side, but they've drawn forth a tenderness that is touching and utterly familiar: "This love was daunting to me. It was the rest of my life, this love... I was Schuyler's prisoner now, and it was in that captivity that I had achieved my life's joy."
-- Elizabeth Roca
Brain, Child (Summer 2008)
June 6, 2008
Interview on Psychjourney
So if you've ever thought to yourself "Say, I like that Rob guy's voice so much, I could listen to him for HOURS," then today is your lucky day. I did an interview yesterday with Deborah Harper, the president of Psychjourney, and what was scheduled to be about a half hour interview turned into an hour and thirteen minutes. Wow!
The thing is, the interview went long because I think we got into some interesting areas, and Deborah is a fantastic interviewer who spends time with a question and follows up on points and gets very personally involved in the answers. We had the opportunity to talk earlier in the week instead of doing the actual interview (as I was sick and sounded like Puberty Frog at the time), and I think that earlier connection really made for a comfortable interview. I was much more at ease for this one than I've been before, and it definitely shows. I know an hour of me jabbering might not sound like your idea of a fun afternoon, but I think you'll like this one.
Psychjourney: Schuyler’s Monster: A Father’s Journey With His Wordless Daughter
When I went to the site this morning, I was surprised to see that in addition to the interview, Deborah had also posted the little video I made of two year-old Schuyler back in the summer of 2002, a full year before she was diagnosed with polymicrogyria. I watched it and found myself getting surprisingly weepy. It took me back to a time when we didn't know any monsters, only this funky, weird little kid who had a wheezy little donkey laugh and liked to dump water out of the bathtub.
My favorite moment is when she violently smacks me in the head and then immediately embraces me with a sort of poignant tenderness. That's my life with Schuyler in a nutshell.
The thing is, the interview went long because I think we got into some interesting areas, and Deborah is a fantastic interviewer who spends time with a question and follows up on points and gets very personally involved in the answers. We had the opportunity to talk earlier in the week instead of doing the actual interview (as I was sick and sounded like Puberty Frog at the time), and I think that earlier connection really made for a comfortable interview. I was much more at ease for this one than I've been before, and it definitely shows. I know an hour of me jabbering might not sound like your idea of a fun afternoon, but I think you'll like this one.
Psychjourney: Schuyler’s Monster: A Father’s Journey With His Wordless Daughter
When I went to the site this morning, I was surprised to see that in addition to the interview, Deborah had also posted the little video I made of two year-old Schuyler back in the summer of 2002, a full year before she was diagnosed with polymicrogyria. I watched it and found myself getting surprisingly weepy. It took me back to a time when we didn't know any monsters, only this funky, weird little kid who had a wheezy little donkey laugh and liked to dump water out of the bathtub.
My favorite moment is when she violently smacks me in the head and then immediately embraces me with a sort of poignant tenderness. That's my life with Schuyler in a nutshell.
June 4, 2008
Dallas Child
A local free monthly called Dallas Child, asked me a few months ago to contribute an article to their regular "daily diary" feature. I wrote up something for them and submitted it, and then promptly forgot about it like a doofus until Julie (who did NOT forget and had been watching for it this whole time) brought home some copies of the June '08 edition from her store.
You know how it is when you write something and then don't see it for a while, then you come back to it and don't actually remember writing much of it? That's how I felt when I read this again. Not in a bad sense, but rather in a "I can be sort of amusing now and again" sort of way.
That sounds like an excellent epitaph, now that I mention it. Someone jot that down.
Dallas Child is available all over the place in the Dallas/Fort Worth area, but it's a pretty safe bet that you can find it at your local bookstore. For the other 99% of you who don't live here, you can read it online:
Daddy Diaries: Robert Rummel-Hudson
You know how it is when you write something and then don't see it for a while, then you come back to it and don't actually remember writing much of it? That's how I felt when I read this again. Not in a bad sense, but rather in a "I can be sort of amusing now and again" sort of way.
That sounds like an excellent epitaph, now that I mention it. Someone jot that down.
Dallas Child is available all over the place in the Dallas/Fort Worth area, but it's a pretty safe bet that you can find it at your local bookstore. For the other 99% of you who don't live here, you can read it online:
Daddy Diaries: Robert Rummel-Hudson
Redacted
I don't like deleting posts, as a rule. But after sleeping on it for a night, I think yesterday's garment-rending was an overreaction. Yes, it was uncool, reading something that one kid said about Schuyler. And as her father, I can almost guarantee I'll react strongly when I feel like she's in danger, even if it's just the danger of having her feelings hurt. Truthfully, I'll probably consistently OVERreact, because I'm a dad. That's what we do. Trust me, it beats the deadbeat alternative.
Anyway, I've taken down the post, because in retrospect, it felt like I was being overly negative and was focusing on one bad experience in a school and with teachers and classmates who have been almost entirely supportive of Schuyler. One of her teachers wrote us and said that Schuyler is an almost universally beloved kid at her school. It seems now to be a little unfair to turn a spotlight on one stumble.
But I'm keeping the photo, because you can't deny that Schuyler works the purple.
Anyway, I've taken down the post, because in retrospect, it felt like I was being overly negative and was focusing on one bad experience in a school and with teachers and classmates who have been almost entirely supportive of Schuyler. One of her teachers wrote us and said that Schuyler is an almost universally beloved kid at her school. It seems now to be a little unfair to turn a spotlight on one stumble.
But I'm keeping the photo, because you can't deny that Schuyler works the purple.
May 30, 2008
Book Launch 2.0
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...)
Film by author Dennis Cass. (Thanks, Karen...)
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.
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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.
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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
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.
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