Schuyler was writing sentences using spelling words for a homework assignment the other day. I popped by her computer to see how she was doing. One of the words she had to use was "bleed". She had a sentence on the screen.
"I bleed the people."
When I asked her what she meant, she just laughed, and kept laughing as I tried in vain to get an answer. She eventually changed it to something about bleeding when she lost a tooth, but I don't know, when your little girl writes "I bleed the people", it's hard to let that go. When she embarks on her future as a brutal despot, don't say I didn't warn you.
-----
Schuyler has been such a constant presence in my life for the past ten years that it's hard to remember what my life without her was like. It's strange, thinking that she never heard me play trombone in a performance (something that she should perhaps be grateful for), or that she never met my first wife (again, something... well, you know). The first thirty-two years of my life had no Schuyler in them, and in all the most significant ways, I feel like they were preparatory years.
But in the past ten years, Schuyler has changed, a lot. People who meet her now see a completely different person than the ethereal, sweet but disconnected little girl I described in my book. They probably think I'm a crappy writer, and they may very well be right about that, but it's not because I didn't describe her accurately at the time. She's changed dramatically in the last three or four years. She's growing up, and becoming the person she's going to be.
She's changing still.
Those of you who have met Schuyler and interacted with her for short periods of time might not believe this. Those of you who have spent a little more time with her may have an inkling of what I'm talking about. She's always been a happy kid, friendly to a fault and energetic to the point of manic, but for the past few months, maybe as long as half a year or so, Schuyler has had occasional but intense lows. She'll start crying for no apparent reason, particularly when I'm away on trips or at work late. She's always tested Julie in different ways from myself, and I suppose that's normal. But in these past few months, she's been sad, sometimes hysterically so. Recently, I've gotten to witness more of it myself, rather than just hearing about it.
Schuyler just turned ten; a few weeks ago, we bought her first training bras. (Yeah, you can imagine how well I took that particular milestone.) As her behavior became more erratic, I think we chalked it up to normal, hormonal changes. But in the past couple of months, and particular the past few weeks, the cloud over Schuyler's mood has darkened. Her emotional state, previously unflappable, has become more tenuous, even sensitive. Perhaps this is what most of you have dealt with in your own children, but it's new to us.
Sometimes when we asked her why she was crying, she would bring up some injury or slight from a classmate, but often these were from days before. I don't believe she was trying to hide anything from us. I think that she was grasping for an answer, trying to reach back to something that made sense, to herself as much as to us.
I don't know why it never occurred to me, of all people, that something a little harder than pre-adolescence might have been at work. The little red flag didn't pop up until I asked her why she was so sad, and she answered "I don't know!" Not defiantly or dismissively, but with real confusion, and a look in her eyes that seemed to ask me what exactly was going on inside her heart.
That's the answer she gives now, when she doesn't have an injury to fall back on. Earlier this week, after hitting her funny bone at school and crying on and off for the rest of the evening, she started off by saying her elbow hurt, but after a few hours and no apparent physical damage, she simply answered "I don't know."
"Schuyler," I asked, once it had occurred to me, stupidly late but finally, "Do you ever feel sad and you don't know why?"
She looked at me, quickly and wide-eyed, as if I'd said something wise, something that had been in front of her all along but had somehow escaped her own realization. "Yes, Daddy."
"I do, too," I said. "It's okay to feel sad. And you can tell me any time it happens, okay? You don't need a reason. I'll always listen to you when you're sad."
She's been hugging harder than usual lately, too.
I don't know much about hormones and little kids, and certainly not little girls. I think I'm probably overreacting, which is my fatherly duty in all things, of course. I do know that when I was Schuyler's age, I'd first begun to experience the dark clouds that came to visit me with greater intensity as I got older. I didn't know what it meant at the time, and none of my own family seemed to notice, which surprises me a little, in retrospect, since my own grandmother killed herself a few years before I was born.
But then, it took me a long time to accept the possibility that Schuyler might just possess one of my own monsters for herself, and that it might just be waking up.
So yeah, I have no idea if Schuyler's simply like every other kid in the world her age, and maybe she's just growing up and living more fully in a world that's not always very kind or easy to understand. It's hard, though, watching her find such emotional valleys now and again, especially seeing as how they contrast so sharply with the genuine highs that have defined her throughout the first decade of her life.
I've been reading a great deal over the past couple of days about childhood depression, and while it's easy to scare myself with the lists of symptoms, I also have to admit that they sound pretty similar to the normal behaviors of little kids who are standing on the edge of adolescence, staring into a future they can't possibly understand. I read about the circumstances in a kid's world than can trigger childhood depression, and they sound an awful lot like Life.
But I have to admit, when I read about depression being caused in part by physiological stressors and genetic vulnerabilities and, God, difficulties in successfully communicating, I feel a real squeeze of fear in the very center of my chest.
I've struggled to understand Schuyler's monster for seven years now. Now I'm facing the glimmer of a possibility that she might be carrying another monster as well, one that I may have given to her and which I understand all too well.
Understanding it doesn't help. I don't know how to protect her from this monster, either.
January 17, 2010
January 10, 2010
January 9, 2010
Hopeful Me
Well, given my previous post, this may seem sort of ironic, but as of today, I am now writing once a month over at Hopeful Parents, a site for families of kids with disabilities. My first post may seem sort of familiar, since it's adapted from something I wrote a few months ago. But it's an issue that's about to raise its ugly head again, just in time for it to get kicked in the mouth by my size thirteens. Because I'm seriously not in the mood to fight this fight again.
Anyway, go check it out. So far, no one's gotten too crazy in the comments, beyond a little bit of passive-aggressive "if you REALLY loved your kid..." stuff. But it's early yet.
December 30, 2009
On things which I really should let go without comment, but you know how I am
"The world breaks everyone, and afterward, some are strong at the broken places."
Yeah, I saw it.
It didn't call me out, not by name. But the language felt familiar. The author is someone with whom I've corresponded a few times, and when I went back and looked at her emails, I discovered why her essay triggered a sense of deja vu. She'd said almost exactly the same thing to me in email, in response to my own use of the word "broken".
But that was almost two years ago.
I don't know what triggered this essay, and really, it doesn't matter. When you're the parent of a child with a disability, your life becomes a cycle of routine and unpredictability. It makes for a curious emotional mix, in which you find yourself struggling not to fall into a rut and at the same time struggling to avoid being knocked off the rails by the unexpected. (Ruts and rails. I'm mixing metaphors, sorry.) I don't know what brought this topic back up again, but it's obviously just as real for her now as it was two years ago, and I understand that completely.
I guess what I'm trying to say is that I'd be a hypocrite if I were to suggest that Michelle O'Neil is somehow wrong to speak her opinion about my word usage. There seems to be a perception among some that the disability community has (or should have) a universal approach to things like language, but nothing could be further from the truth. I have many issues with People First Language; I personally can't imagine anything worse than asking a child to "take ownership" of their disability while somehow believing that they can do so without also taking responsibility for it. But one thing that truly pets my fur backwards is the idea that People First Language MUST become standard usage within the disability community, professional and family alike. We don't all approach disability in the same way, and Michelle O'Neil's opinion about my use of language is as valid as anyone's. Well, of course it is.
At the same time, however, there was one part of her essay that troubled me.
I appreciate that she means no disrespect, but I guess I should be clear about something now. There are particular aspects of my writing that exist to get your attention. And when I feel like someone needs to be called out, I don't hesitate to do so. (Hi, Bernie Goldberg.) But where disabilities and parenting are concerned, I'm not sure exactly what I would hope to accomplish by intentionally offending other parents, people whose philosophies and approaches and sources of inspiration may differ from mine, but whose struggles and pain are all too familiar.
When I put Schuyler on a t-shirt or program Pinkessa to shill for A&W Root Beer, then you'll have your publicity stunt. (Note to A&W: Call me.)
* * *
"What will Schuyler think when she reads that you believe she's broken?" I'm asked, and the implication is that Schuyler will be hurt and insulted by the word. But to me, the question itself is offensive. It suggests that Schuyler is simple enough and unaware enough that she'll never know the difference, if only the people around her choose the right words.
Schuyler knows. When a TSA agent sarcastically asked her if she could talk, she simply answered "No," without sadness or regret or hurt. She knows, and she compensates, and while her lack of anxiety or sadness about her condition may not last forever, her understanding of exactly who and what she is and what she can be will always be her greatest strength.
"I can't talk," Schuyler says simply, her hand on her throat, but even as the listener begins to make that face, the one etched in unwanted pity, Schuyler is reaching for Pinkessa, impatiently waiting for it to power up so she can tell you that her name is Schuyler, and she's ten years old, and she has a dog named Max and a hamster named Swee. She's broken, and she knows it, but she's got a hell of a fix for that, and she's waiting for you to be impressed. Which you should be.
Broken things of little value are discarded. Broken things of worth are made whole again. Despite all my self-doubts, I continue to flatter myself enough to believe that come what may, Schuyler will always know in which of those categories she belongs.
"I am ten years old."
-- Ernest Hemingway
-----Yeah, I saw it.
It didn't call me out, not by name. But the language felt familiar. The author is someone with whom I've corresponded a few times, and when I went back and looked at her emails, I discovered why her essay triggered a sense of deja vu. She'd said almost exactly the same thing to me in email, in response to my own use of the word "broken".
But that was almost two years ago.
I don't know what triggered this essay, and really, it doesn't matter. When you're the parent of a child with a disability, your life becomes a cycle of routine and unpredictability. It makes for a curious emotional mix, in which you find yourself struggling not to fall into a rut and at the same time struggling to avoid being knocked off the rails by the unexpected. (Ruts and rails. I'm mixing metaphors, sorry.) I don't know what brought this topic back up again, but it's obviously just as real for her now as it was two years ago, and I understand that completely.
I guess what I'm trying to say is that I'd be a hypocrite if I were to suggest that Michelle O'Neil is somehow wrong to speak her opinion about my word usage. There seems to be a perception among some that the disability community has (or should have) a universal approach to things like language, but nothing could be further from the truth. I have many issues with People First Language; I personally can't imagine anything worse than asking a child to "take ownership" of their disability while somehow believing that they can do so without also taking responsibility for it. But one thing that truly pets my fur backwards is the idea that People First Language MUST become standard usage within the disability community, professional and family alike. We don't all approach disability in the same way, and Michelle O'Neil's opinion about my use of language is as valid as anyone's. Well, of course it is.
At the same time, however, there was one part of her essay that troubled me.
The term "broken" continues to float around a bit in special needs circles. It peaks my curiosity, but no longer stings.
At best it is an attempt at conveying the struggle and challenges a special needs child faces. In no way do I dismiss those challenges. Our family faces plenty of challenges, but some children and parents deal with more than I can ever imagine and I mean no disrespect. At worst, however, the use of the term "broken" in reference to a child with special needs is a publicity stunt aimed toward offending.
I appreciate that she means no disrespect, but I guess I should be clear about something now. There are particular aspects of my writing that exist to get your attention. And when I feel like someone needs to be called out, I don't hesitate to do so. (Hi, Bernie Goldberg.) But where disabilities and parenting are concerned, I'm not sure exactly what I would hope to accomplish by intentionally offending other parents, people whose philosophies and approaches and sources of inspiration may differ from mine, but whose struggles and pain are all too familiar.
When I put Schuyler on a t-shirt or program Pinkessa to shill for A&W Root Beer, then you'll have your publicity stunt. (Note to A&W: Call me.)
"What will Schuyler think when she reads that you believe she's broken?" I'm asked, and the implication is that Schuyler will be hurt and insulted by the word. But to me, the question itself is offensive. It suggests that Schuyler is simple enough and unaware enough that she'll never know the difference, if only the people around her choose the right words.
Schuyler knows. When a TSA agent sarcastically asked her if she could talk, she simply answered "No," without sadness or regret or hurt. She knows, and she compensates, and while her lack of anxiety or sadness about her condition may not last forever, her understanding of exactly who and what she is and what she can be will always be her greatest strength.
"I can't talk," Schuyler says simply, her hand on her throat, but even as the listener begins to make that face, the one etched in unwanted pity, Schuyler is reaching for Pinkessa, impatiently waiting for it to power up so she can tell you that her name is Schuyler, and she's ten years old, and she has a dog named Max and a hamster named Swee. She's broken, and she knows it, but she's got a hell of a fix for that, and she's waiting for you to be impressed. Which you should be.
Broken things of little value are discarded. Broken things of worth are made whole again. Despite all my self-doubts, I continue to flatter myself enough to believe that come what may, Schuyler will always know in which of those categories she belongs.
December 26, 2009
Snow Day, 2003
After it snowed the other day, I went looking for video to show Schuyler what we used to call REAL snow. I knew I had some boring old holiday videos I could show her, but in addition, I found this ridiculous little thing I made in February 2003, on a day when we were snowed in with nothing much to do. (That much is clear.)
Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.
A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.
(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)
As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"
Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.
A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.
(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)
As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"
December 25, 2009
Xmas 2009: Surprise Snow, Purple Guitars and Flying Monsters
Santa's detritus
Christmas morning hair
White Christmas, if you get up before it melts off. (Which it did.)
Christmas sunrise
It's just not a traditional Christmas without a flying monster.
The guitar that she's been asking for all year. We're afraid that her polymicrogyria will make it hard and frustrating for her little fingers, but in the end, we decided that at a time of hope and renewal, why not let her give it a try?
I hope that no matter what the reason for YOUR season might be, you have the very best possible holiday and a new year full of promise and hope, of dreams come true and all new dreams after that.
December 21, 2009
Schuyler, at ten
"It is rare that one can see in a little boy the promise of a man, but one can almost always see in a little girl the threat of a woman."
-- Alexandre Dumas
December 19, 2009
Father of the Year nominations are now closed.
A few facts about the next few days, along with an inescapable conclusion.
Fact: Two of my best friends are getting married in Las Vegas on Monday.
Fact: They have asked me to take pictures at the event, which I am thrilled to do.
Fact: Julie cannot attend, as she has to work.
Fact: Julie can't watch Schuyler while she works, and school is out for the year.
Fact: Schuyler also turns ten on Monday. (Yeah, I know. Ten.)
CONCLUSION: I will be taking my sweet little girl to Vegas for her birthday.
When Child Protective Services meets us at the airport, I hope they'll help with our luggage.
December 7, 2009
Post-Carolina
I just wanted to take a moment and thank everyone from the North Carolina Assistive Technology Expo for a fantastic conference. Schuyler and I were made to feel welcome, and we met some truly amazing people, which is hardly a surprise by now. Our thanks to Chip Clarke and Dawn Haynes from PRC for their generosity, and to April Furr and my friend Elizabeth for making the logistics of presenting at something like this by myself with Schuyler even feasible.
It was a fun trip, despite the efforts of the TSA at the Raleigh-Durham Airport to ruin our return trip. (TSA Agent to Schuyler: "What's your name?" Schuyler: "Aye-er." Me: "Her name is Schuyler." TSA sarcastically, to Schuyler: "What, you can't talk or something?" Schuyler and I both: "No...") I never mind traveling with Schuyler, and she's got more patience for the inevitable inconveniences of flying than any adult I know.
She loves a rough flight, so when everyone else is white-knuckling, she's laughing her little head off. True story: When she asked me what was causing the plane to bump around, I told her it was a monster, because I'm that guy. She loved that answer, because she's that girl, and asked me the monster's name. "It's the Turbulence Monster," I said. Not five seconds later, the captain came on and apologized for the turbulence, and when he said the word, she looked at me in wonder and joy as if what I'd said just might be true. Thanks, captain, for that unexpected credibility.
It's funny, but in so many ways, I am reminded on a trip like this most of all that Schuyler is growing up, and into the young woman that I always wanted her to be. Happy, chaotic, funny, in love with everyone and afraid of nothing.
I had a realization today, something of an epiphany, really. It's one that I started to have, very tentatively, when I was writing the book, and I even wrote about it at the very end, although whether or not I always believed it is probably debatable. Today I realized that Schuyler is at a point in her life where there's no turning back. She's going to make it. She's not there yet, and not even close, but she knows what she has to do to get there, and there's a whole village of people watching her who literally will not allow her to get lost or fall through the cracks now.
I think I can see now that if something were to happen to me today, Schuyler would be okay. And that means the whole world to me.
It was a fun trip, despite the efforts of the TSA at the Raleigh-Durham Airport to ruin our return trip. (TSA Agent to Schuyler: "What's your name?" Schuyler: "Aye-er." Me: "Her name is Schuyler." TSA sarcastically, to Schuyler: "What, you can't talk or something?" Schuyler and I both: "No...") I never mind traveling with Schuyler, and she's got more patience for the inevitable inconveniences of flying than any adult I know.
She loves a rough flight, so when everyone else is white-knuckling, she's laughing her little head off. True story: When she asked me what was causing the plane to bump around, I told her it was a monster, because I'm that guy. She loved that answer, because she's that girl, and asked me the monster's name. "It's the Turbulence Monster," I said. Not five seconds later, the captain came on and apologized for the turbulence, and when he said the word, she looked at me in wonder and joy as if what I'd said just might be true. Thanks, captain, for that unexpected credibility.
It's funny, but in so many ways, I am reminded on a trip like this most of all that Schuyler is growing up, and into the young woman that I always wanted her to be. Happy, chaotic, funny, in love with everyone and afraid of nothing.
I had a realization today, something of an epiphany, really. It's one that I started to have, very tentatively, when I was writing the book, and I even wrote about it at the very end, although whether or not I always believed it is probably debatable. Today I realized that Schuyler is at a point in her life where there's no turning back. She's going to make it. She's not there yet, and not even close, but she knows what she has to do to get there, and there's a whole village of people watching her who literally will not allow her to get lost or fall through the cracks now.
I think I can see now that if something were to happen to me today, Schuyler would be okay. And that means the whole world to me.
November 28, 2009
Road Trip with Schuyler
Schuyler and I are coming to North Carolina this week, for the North Carolina Assistive Technology Program's 2009 Assistive Technology Expo. Julie has to work (retail and the holidays make for scant flexibility, as some of you doubtless know already), so it'll just be the two of us.
Will there be trouble and chaos? Come see us and find out. (Smart money says chaos for sure.)
Here are the details:
December 3, 2009
December 3, 2009
10:00am (Opening Session, Salons A, B, C, D ) - Keynote Address: “Fighting Monsters with Rubber Swords” - Robert Rummel-Hudson (Author, Parent)
12:30pm (Salon C) - “Implementing the Big Box of Words: A Parent’s Perspective” - Robert Rummel-Hudson, Author, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St. Martin’s Press 2009) - Listen to a father’s observations on the implementation of AAC in the daily life and school curriculum of a nonverbal child.
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December 3 - 4, 2009
12:30pm (Salon C) - “Implementing the Big Box of Words: A Parent’s Perspective” - Robert Rummel-Hudson, Author, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St. Martin’s Press 2009) - Listen to a father’s observations on the implementation of AAC in the daily life and school curriculum of a nonverbal child.
----
December 3 - 4, 2009
2009 Assistive Technology Expo
North Carolina Assistive Technology Program
North Raleigh Hilton, Raleigh, NC
What: The Assistive Technology Expo is an exciting two-day event designed to increase awareness and provide current information on assistive technology. Conference offerings include an exhibit hall (on 12/03/09 only) featuring 30-40 vendors exhibiting the latest in assistive technology products and services, 40 concurrent sessions, a poster session and a Keynote address. Featured Tracks: Work, Education, Vision, Home Modifications and Promoting Healthy Living/Recreation.
Who: Each year between 550-700 registered participants from across the country attend the NC AT Expo and approximately 1250 attend the free Exhibit Hall. Participants include: persons with disabilities, family members, teachers, therapists, Vocational Rehabilitation and Independent Living staff, rehabilitation counselors, employers, engineers, college professors, medical staff, college and university students, and authorized state purchasers.
North Carolina Assistive Technology Program
North Raleigh Hilton, Raleigh, NC
What: The Assistive Technology Expo is an exciting two-day event designed to increase awareness and provide current information on assistive technology. Conference offerings include an exhibit hall (on 12/03/09 only) featuring 30-40 vendors exhibiting the latest in assistive technology products and services, 40 concurrent sessions, a poster session and a Keynote address. Featured Tracks: Work, Education, Vision, Home Modifications and Promoting Healthy Living/Recreation.
Who: Each year between 550-700 registered participants from across the country attend the NC AT Expo and approximately 1250 attend the free Exhibit Hall. Participants include: persons with disabilities, family members, teachers, therapists, Vocational Rehabilitation and Independent Living staff, rehabilitation counselors, employers, engineers, college professors, medical staff, college and university students, and authorized state purchasers.
November 22, 2009
CP Study
For parents of kids with cerebral palsy, I'm posting this on behalf of Adam Bowker. Adam is a speech pathologist and AAC researcher whom we had the pleasure of meeting at the American Speech Language Hearing Association Convention last year. He's one of the good guys.
-----
Dear parents,
I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).
Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.
Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.
If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850
-----
Dear parents,
I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).
Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.
Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.
If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850
November 19, 2009
More on Bernie Goldberg
(Heh. "More on Bernie Goldberg". I'm twelve.)I had listed these updates on the last blog post, but at this point, I think they probably deserve their own post. So here you go:
Update: I posted a comment on his blog (and you can, too!):
Robert Rummel-Hudson says:November 19, 2009 at 10:56 pmThe thing is, and I suspect you are fully aware of this, parents of kids with disabilities aren’t offended because of your conservative positions. We’re offended, deeply offended, because you have taken our children’s plights, their very LIVES, and you have turned them into talking points. You’ve politicized the most personal and difficult decision a family can face, all in the service of a cheap shot.Here’s a secret for you, although if you had any experience with or sensitivity toward children with disabilities , it wouldn’t be a secret at all. Most of us who are raising children with disabilities don’t hate Sarah Palin, no matter how liberal our politics might be. We may hate her politics, but she’s part of our club. It’s a club none of us ever asked to join, and it’s a club with a lifetime membership. And for Sarah Palin, as with the rest of us in that club, the politics of disability will be personal for her.As a non-member of our club, please do us the courtesy of politicizing your own children and leave ours alone. They have enough to worry about as it is.– Robert R-H
Update to the update: A very interesting, very intelligent comment was left on Mister Goldberg's blog that you definitely have to read. It presents, among other thoughtful points, a simple math question.
If, as reported by King's College in London, roughly 90% of fetuses diagnosed with Down Syndrome in utero are aborted, and if Down Syndrome is the result of a genetic defect that does not affect any one particular ethnic or demographic group more than any other, then clearly, liberals aren't the only parents making the difficult and heartbreaking choice to have abortions when faced with the prospect of having a child with Down Syndrome. More to the point, there are families, a LOT of them, who consider themselves to be religious, and who identify as Pro-Life, who are nevertheless making a very tough and very personal decision, and they aren't basing it on politics.
Bernie Goldberg, I hope you will consider the possibility that this decision might just be more complicated than you are allowing in your idiotic Fox News sound bite. It might be time for you to apologize for what was, upon further reflection, a deeply stupid comment.
Because I am rather fond of oxygen, however, I won't be holding my breath.
Update cubed: Bernie has issued a statement about his remarks. Buried deep within his post, near the end, is something like an apology:
As for Palin’s decision not to abort her baby with Down Syndrome: Women and their husbands should do whatever they think is best in those circumstances. I have no say in those matters and I would never try to influence someone’s decision in that area. It’s simply, and obviously, none of my business. But I am asking this: Who is more likely to have the baby with Down Sydrome, a pro-choice woman or a pro-life woman? A woman who isn’t religious or one who is? A woman who believes a life – even a life of a fetus – is sacred, or one who doesn’t? I know there are many who will disagree, but I think it’s a safe bet that the pro-life, religious woman who believes in the sanctity of life is more likely to go continue her pregnancy (even as many who fit that description will abort a fetus with Down Syndrome).
That’s all I was trying to say. I never thought I was “politicizing” anyone’s children or anyone’s pain. If I did that, my sincere apologies to one and all. But I still believe many elite liberals hate Sarah Palin for a whole bunch of reasons that have little to do with how she would vote on this issue or that — or even, as they often claim, because they don’t think she’s that smart, There are lots of lbierals who aren’t “that smart” — and they don’t seem to trouble their fellow libs all that much.
Bernie Goldberg's career as an author and a talking head is entirely, completely, 100% based on his ability to politicize every issue that he touches and to demonize and dehumanize people whose political beliefs differ from his own. If he admits that he crossed a line and that some of the heartbreaking, grey-area moral questions faced by families like ours can and should transcend red/blue politics, then he weakens his brand. I suspect, therefore, that this is as good as we're likely to get.
So thanks, Bernie. You're a peach.
A Message for Bernie Goldberg
I'm going to start off by saying that I had no idea who Bernie Goldberg was before this. A few minutes on Wikipedia and his own website told me plenty, that he's got a snappy suit with a nice tie, and that he's a conservative writer with a penchant for hyperbolic book titles. And that's fine, really. There are plenty of conservative writers whom I've admired in the past. (Well, "plenty" is perhaps pushing it.) I realize that sounds dangerously close to "some of my best friends are black", but it is what it is. In my own writing, I try to be fair and I try not to be boring. (It's harder than it sounds.) Follow those two rules and I don't care what your politics are.I also never watch Fox News (see above re: fair and not boring), so I probably would have missed Bernie Goldberg's comments if not for Jon Stewart last night. The topic was Sarah Palin, or more precisely the media reaction to Sarah Palin. The part that jumped out at me came at about 6:15 in the show:
| The Daily Show With Jon Stewart | Mon - Thurs 11p / 10c | |||
| Daily Show: The Rogue Warrior | ||||
| ||||
If you don't feel like sitting through that, here's the money quote from Mister Goldberg:
"She [Palin] has five kids. Liberals don't have five kids. One of them has Down Syndrome. Liberals certainly don't allow THAT to happen."
Okay.
So let me strip this of politics for a moment, because I find it equally distasteful when people of any political stripe do this, and I try (with admittedly varying degrees of success, I'm sure, so call me a hypocrite if you like) to avoid doing it myself. But let me just state something that would seem to be torn right from the pages of The Encyclopedia of No Shit.
Families of kids with disabilities are not here to serve as your political talking points.
Whether or not you are a good parent to a child with a disability has nothing to do with your politics. Conservatives have broken children, liberals have broken children, and we all do the best that we can.
Conservative politicians say stupid things ("How does special education, $6 billion dollars, stimulate the economy?" - Sen. John Kyl), and so do liberals (President Obama's idiotic joke about the Special Olympics). If there's one thing I think we can all agree on, it's that neither party has been particularly sensitive to the needs of the disability community, not when it comes to actually doing something besides talking pretty. If you are in public office and your last name isn't "Kennedy", chances are, you haven't done enough to help these kids.
Perhaps I'm just not looking hard enough, but I can't find any information online that suggests that Bernie Goldberg has any particular expertise regarding children with disabilities. I felt pretty confident, therefore, in sending a message to Bernie via Twitter, one that I am absolutely 100% certain will fall on deaf ears.
"Please politicize your own kids, not ours."
Ass.
November 18, 2009
From the margins
Over the weekend, we participated in the 2009 Childhood Apraxia for Speech Walk in Fort Worth. I realize that I almost never use the term "apraxia" to describe Schuyler's monster, mostly because in her case, we know where it comes from, which is hardly the case for many or even most parents of kids with apraxia of speech. We're at least spared some of the mystery, which is no small thing. Think of all the scariest movies you've ever seen; it's the monster you CAN'T see that inspires the deepest dread.
Schuyler's particular affliction, Bilateral Perisylvian Polymicrogyria (PMG), isn't a disease. It's a condition, a congenital malformation of her brain. From this condition spring the symptoms and the disorders and the disabilities that kids with PMG experience, such as epilepsy and apraxia. It's a subtle distinction, and one that is honestly sort of meaningless in the big scheme of things, but it does mean that families dealing with polymicrogyria are also dealing with these other disorders individually. To a parent whose child is being tormented by seizures, epilepsy is a more immediate concern than polymicrogyria. Sometimes the monster's claws loom larger than the monster itself.
So we signed up, raised some money (and thank you to everyone who contributed!), and on a perfect Sunday afternoon, we all met in a park and did this thing. We showed up, freaky non-barking pug in tow (and how perfect was it, bringing our non-verbal dog to an apraxia of speech event?), and I think everyone had a fantastic time. I got to meet some people who'd read the book and have some very meaningful conversations about it, and most of all, we got to spend time with families who are, in one way or another, in the same boat with us.
There were two groups who stood out in my mind at this event, both of whom represent a crucial part of the disability community and have their own unique set of concerns, and yet are both deeply marginalized in typical discussions of disability parenting.
Unless childhood apraxia of speech accompanies other conditions with more obvious manifestations, many of these kids, like Schuyler, can pass, at least at first glance, as neurotypical kids. Indeed, in watching them play together on Sunday, it was hard to tell which kids were apraxic and which were siblings or otherwise unaffected family or friends. Obviously, this is a double-edged sword. It's a good thing, mostly. These are kids who have one major social obstacle removed from their path, that gut-level negative reaction to someone who appears different or broken. It's that thing that lives in our lizard brain, the caveman instinct that says to flee the afflicted lest you yourself suffer the same fate. Any parent of a child with an outwardly obvious disability can tell you how horrible that reaction can be, even from the most well-intentioned. It's a bullet that Schuyler has largely dodged, and for that I am entirely grateful.
But at the same time, there is another look, another reaction, one that has its own sting. It's the one that parents of kids with autism are often the most familiar with, the one that is stripped of sympathy because your child looks, and here's that word, normal. Your child doesn't have outward signs of their disability, no physical malformations, no tics, no spasms or limps, no prosthetics, no flags that say "Tread carefully here". They appear instead to be children who act out, who choose not to communicate or to interact socially in a way deemed appropriate. Their parents are asked why they can't control their kids. I still remember the surly woman who berated Schuyler for "mocking" her questions with her nonsensical babbling.
It's not a worse problem, and in about a hundred different ways it's the one I'd pick if given a choice between the two possibilities. (What wouldn't I give for that third choice?) But it's real nonetheless, and watching Schuyler play with these kids on Sunday and knowing that anyone walking past would see nothing out of the ordinary, I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."
It's hard for families, and most of all, it's hard for these kids. They want to be "normal", and appearing so doesn't change that. Looking like a real boy wasn't much consolation to Pinocchio.
The other group I saw in greater numbers than usual at the event was fathers. A lot has been made of the fact that mothers comprise the majority of disability caregivers, and for every blog and book out there dealing with fathers of disabled kids, there are many more from the perspective of mothers. The numbers are what they are. I won't try to pretend otherwise.
But I think it's time to start examining some of the underlying reasons that this inequality continues, something beyond "Guys are jerks." Lately, I've had the opportunity to meet some amazing fathers. I spoke on a panel at the Texas Book Festival with two other authors, fathers whose involvement with their children's care was extraordinary and moving. I had lunch recently with a father looking for advice on his own manuscript, a deeply personal look at his experience with a child with autism. And at the Apraxia Walk, I met fathers whose commitment to their kids is unshakable and which should be unquestionable.
When fathers like these come up against a society that expects them to fail their children and which doesn't even bother to make a place at the table for them, they feel marginalized. WE feel marginalized, I should say, because years of loud-mouthed advocacy and publication of a book hasn't changed the fact that I still have to insist on that spot in the discussion, too. For fathers less aggressive and narcissistic than me, the path of least resistance beckons.
I understand that every one of the "special needs moms" websites and books out there has a right to exist and speak to the particular issues faced by mothers of broken children. But I also wonder how many of those particularly "mother" pressures would be eased if we started to make that place for fathers to feel like they are part of the discussion. Because everyone time a writer couches the struggles of families of disability in the guise of "mothers' issues", they are instantly excluding some of the voices that matter the most.
Not all of the discrimination in the disability world comes from outside. Not all the erroneous assumptions are made by people who don't, or shouldn't, know better.
Schuyler's particular affliction, Bilateral Perisylvian Polymicrogyria (PMG), isn't a disease. It's a condition, a congenital malformation of her brain. From this condition spring the symptoms and the disorders and the disabilities that kids with PMG experience, such as epilepsy and apraxia. It's a subtle distinction, and one that is honestly sort of meaningless in the big scheme of things, but it does mean that families dealing with polymicrogyria are also dealing with these other disorders individually. To a parent whose child is being tormented by seizures, epilepsy is a more immediate concern than polymicrogyria. Sometimes the monster's claws loom larger than the monster itself.
So we signed up, raised some money (and thank you to everyone who contributed!), and on a perfect Sunday afternoon, we all met in a park and did this thing. We showed up, freaky non-barking pug in tow (and how perfect was it, bringing our non-verbal dog to an apraxia of speech event?), and I think everyone had a fantastic time. I got to meet some people who'd read the book and have some very meaningful conversations about it, and most of all, we got to spend time with families who are, in one way or another, in the same boat with us.
There were two groups who stood out in my mind at this event, both of whom represent a crucial part of the disability community and have their own unique set of concerns, and yet are both deeply marginalized in typical discussions of disability parenting.
Unless childhood apraxia of speech accompanies other conditions with more obvious manifestations, many of these kids, like Schuyler, can pass, at least at first glance, as neurotypical kids. Indeed, in watching them play together on Sunday, it was hard to tell which kids were apraxic and which were siblings or otherwise unaffected family or friends. Obviously, this is a double-edged sword. It's a good thing, mostly. These are kids who have one major social obstacle removed from their path, that gut-level negative reaction to someone who appears different or broken. It's that thing that lives in our lizard brain, the caveman instinct that says to flee the afflicted lest you yourself suffer the same fate. Any parent of a child with an outwardly obvious disability can tell you how horrible that reaction can be, even from the most well-intentioned. It's a bullet that Schuyler has largely dodged, and for that I am entirely grateful.
But at the same time, there is another look, another reaction, one that has its own sting. It's the one that parents of kids with autism are often the most familiar with, the one that is stripped of sympathy because your child looks, and here's that word, normal. Your child doesn't have outward signs of their disability, no physical malformations, no tics, no spasms or limps, no prosthetics, no flags that say "Tread carefully here". They appear instead to be children who act out, who choose not to communicate or to interact socially in a way deemed appropriate. Their parents are asked why they can't control their kids. I still remember the surly woman who berated Schuyler for "mocking" her questions with her nonsensical babbling.
It's not a worse problem, and in about a hundred different ways it's the one I'd pick if given a choice between the two possibilities. (What wouldn't I give for that third choice?) But it's real nonetheless, and watching Schuyler play with these kids on Sunday and knowing that anyone walking past would see nothing out of the ordinary, I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."
It's hard for families, and most of all, it's hard for these kids. They want to be "normal", and appearing so doesn't change that. Looking like a real boy wasn't much consolation to Pinocchio.
The other group I saw in greater numbers than usual at the event was fathers. A lot has been made of the fact that mothers comprise the majority of disability caregivers, and for every blog and book out there dealing with fathers of disabled kids, there are many more from the perspective of mothers. The numbers are what they are. I won't try to pretend otherwise.
But I think it's time to start examining some of the underlying reasons that this inequality continues, something beyond "Guys are jerks." Lately, I've had the opportunity to meet some amazing fathers. I spoke on a panel at the Texas Book Festival with two other authors, fathers whose involvement with their children's care was extraordinary and moving. I had lunch recently with a father looking for advice on his own manuscript, a deeply personal look at his experience with a child with autism. And at the Apraxia Walk, I met fathers whose commitment to their kids is unshakable and which should be unquestionable.
When fathers like these come up against a society that expects them to fail their children and which doesn't even bother to make a place at the table for them, they feel marginalized. WE feel marginalized, I should say, because years of loud-mouthed advocacy and publication of a book hasn't changed the fact that I still have to insist on that spot in the discussion, too. For fathers less aggressive and narcissistic than me, the path of least resistance beckons.
I understand that every one of the "special needs moms" websites and books out there has a right to exist and speak to the particular issues faced by mothers of broken children. But I also wonder how many of those particularly "mother" pressures would be eased if we started to make that place for fathers to feel like they are part of the discussion. Because everyone time a writer couches the struggles of families of disability in the guise of "mothers' issues", they are instantly excluding some of the voices that matter the most.
Not all of the discrimination in the disability world comes from outside. Not all the erroneous assumptions are made by people who don't, or shouldn't, know better.
November 10, 2009
Flygirl Realized
On Halloween weekend, we had an amazing experience, one that we're unlikely to forget any time soon. Almost a week and a half later, we're all still talking about it.And the book festival was fun, too.
A few weeks ago, when they saw that Schuyler had chosen her hero, Amelia Earhart, for her Halloween costume, Austin friends Jim and Pat Howard emailed me with an amazing offer for Schuyler's weekend in town for the Texas Book Festival, assuming we had time. When I read the offer, I knew immediately that we'd make the time.
I'm not sure how long I've known Jim and Pat, although I can remember Jim giving me a hard time about buying my previous car, the admittedly ridiculous Beelzebug, and that was over ten years ago. Jim and I couldn't be further apart in our politics, but we've never let that poison our friendship. As a result, I think that even when we disagree, we do actually hear each other occasionally. We finally met face to face a number of years ago, I believe when I returned to Texas from my Yankee exile, and Julie and I have counted the Howards as constant supporters of Schuyler and this family for as along as I can remember. I was delighted by their offer, but I can't say I was surprised.
So it was that on a beautiful, clear Sunday morning a week and a half ago, Julie and Schuyler and I found ourselves at the airport in Austin, walking out to see what was easily the most beautiful aircraft I have ever seen.
The jet is a Dassault Mystere Falcon 900, built in France and considered to be among the finest, if not the finest, civilian aircraft that a gigantic box of money can buy. (According to the Dassault website, there are only 160 of them in the world.)
The pilot of the Falcon is Kyle Kimmell, and from the first moment we met him, he impressed us with his kindness towards Schuyler, his patience with her and his appreciation of her enthusiasm. I can't even begin to express how generous it was for him and for the plane's owner to have prepped and made available for her to see it like this. The Falcon was sleek and perfect on the outside, and indescribably plush in the cabin, but Schuyler was only interested in the cockpit. Kyle explained what all the controls did, he didn't flinch when she grabbed the headset and put it on, and he even let her start up the engines. (I suspect she burned about a month of my salary's worth of fuel while we were sitting there.) He was more than patient. Kyle seemed genuinely happy to show this amazing aircraft to Schuyler, and he thanked us for bringing her more than once.
And really, getting to go on board the Falcon and sit in the cockpit and fire up the plane's systems, all of that would have been enough to make Schuyler's whole year.
But we were just getting started.
Jim is a member and past president of the Chandelle Flying Club in Austin, the group that owns the 1978 Piper PA-28 Warrior that he took us up in. Like her hero Amelia Earhart, Schuyler got to take to the air.
Owing to a lack of space and Julie's intense and unshakable desire not to leave the ground, the flight consisted of Jim and Schuyler in the front and me sitting behind them. Jim walked Schuyler through the pre-flight check and showed her exactly what he was doing, and then we were off.
Schuyler can be a squirrelly kid when she gets excited, and we were worried that she might get a little flighty, no pun intended. But throughout the whole experience, from the moment we climbed into the plane on, she was suddenly very focused, listening carefully to Jim's instructions and becoming very quiet when he needed to communicate with the control tower. She was a perfect little passenger as the plane took off and as Jim climbed to about 3000 feet.
And then she became a perfect little pilot.
I don't think she believed that she was actually flying the plane until Jim took his hands off the controls altogether. He showed her the basics of flight control and then, for the bulk of the rest of the flight (excluding the landing, of course), Schuyler piloted the plane. Jim would pick landmarks on the ground, such as smoke from a fire or the glint of the sun on a lake, and Schuyler would take us there, circling the target once we arrived. Jim emailed me afterwards to let me know that she had in fact been flying the plane for most of the flight. "I think she pretty much figured out how to control the roll axis," he wrote. "When I helped it was usually with the pitch axis. As is typical for new flyers she started with a death grip on the control yoke, but unlike some adults I've flown with I was able to persuade her to relax and hold the yoke more gently, which makes flying much easier."
It's a funny thing about Schuyler. She's got this disability, and it throws obstacles in her path every day. School is challenging for her and will only become more so. The social life of a preteen girl isn't going to be easy or gentle on her, either, particularly not in a town like Plano. Her future is harder than I let on sometimes, perhaps because I want her story to be nothing but successes, and I suppose sometimes I don't talk much about the bumps that she hits, or the ones still waiting in the future for her.
But Schuyler is tenacious, and while she loved flying and is still talking about it (and answering happily to "Flygirl"), I don't think it occurs to her that she's unusual for getting to go up in an airplane, to actually take control of an aircraft and fly it. For Schuyler, life seems to be a series of experiences, of new people to meet while she signs books with her face on the cover, to attend a book festival and listen as her story is discussed by a panel of published authors, to see herself or her father on television, or to take to the air. I've gotten a lot of things wrong with her over the years; I've blown it many times as her father. But by introducing her to a world with people like Jim and Pat Howard and Kyle Kimmell in it, and by trying my very best to accommodate unique opportunities for her, I like to think that sometimes I get it right, even if that just means getting out of her way. I'm forty-one years old and I've never flown an airplane. I like to think that Schuyler's life experiences will intensely outshine my own. In all the significant ways, they already have.
All of this is to say that I am immensely proud of Schuyler, more than I have words for.
Jim described Schuyler as "a real ball of fire, with the heart of a lioness". I felt bad for him in one moment, when he took the controls to show Schuyler exactly how steeply the plane could turn. I'm not sure what he thought he saw when he glanced over at her, but he seemed to think that perhaps he'd pushed it too far, that the daunting angle of the plane had frightened or bothered Schuyler. But midway through the second turn, I tapped her on the shoulder and asked her if she was having fun.
I think the photo I snapped when she looked back at me says it all:
Thanks to pilots Jim Howard and Kyle Kimmell.
"It is before our very eyes..."
Excerpts from remarks by President Obama at the memorial service at Fort Hood, Texas.
For those families who have lost a loved one, no words can fill the void that has been left. We knew these men and women as soldiers and caregivers. You knew them as mothers and fathers; sons and daughters; sisters and brothers.
But here is what you must also know: your loved ones endure through the life of our nation. Their memory will be honored in the places they lived and by the people they touched. Their life's work is our security, and the freedom that we too often take for granted. Every evening that the sun sets on a tranquil town; every dawn that a flag is unfurled; every moment that an American enjoys life, liberty and the pursuit of happiness – that is their legacy.
...
As we face these challenges, the stories of those at Fort Hood reaffirm the core values that we are fighting for, and the strength that we must draw upon. Theirs are tales of American men and women answering an extraordinary call – the call to serve their comrades, their communities, and their country. In an age of selfishness, they embody responsibility. In an era of division, they call upon us to come together. In a time of cynicism, they remind us of who we are as Americans.
We are a nation that endures because of the courage of those who defend it. We saw that valor in those who braved bullets here at Fort Hood, just as surely as we see it in those who signed up knowing that they would serve in harm's way.
We are a nation of laws whose commitment to justice is so enduring that we would treat a gunman and give him due process, just as surely as we will see that he pays for his crimes.
We are a nation that guarantees the freedom to worship as one chooses. And instead of claiming God for our side, we remember Lincoln's words, and always pray to be on the side of God.
We are a nation that is dedicated to the proposition that all men and women are created equal. We live that truth within our military, and see it in the varied backgrounds of those we lay to rest today. We defend that truth at home and abroad, and we know that Americans will always be found on the side of liberty and equality. That is who we are as a people.
Tomorrow is Veterans Day. It is a chance to pause, and to pay tribute – for students to learn of the struggles that preceded them; for families to honor the service of parents and grandparents; for citizens to reflect upon the sacrifices that have been made in pursuit of a more perfect union.
For history is filled with heroes. You may remember the stories of a grandfather who marched across Europe; an uncle who fought in Vietnam; a sister who served in the Gulf. But as we honor the many generations who have served, I think all of us – every single American – must acknowledge that this generation has more than proved itself the equal of those who have come before.
We need not look to the past for greatness, because it is before our very eyes.
...
Long after they are laid to rest – when the fighting has finished, and our nation has endured; when today's servicemen and women are veterans, and their children have grown – it will be said of this generation that they believed under the most trying of tests; that they persevered not just when it was easy, but when it was hard; and that they paid the price and bore the burden to secure this nation, and stood up for the values that live in the hearts of all free peoples.
So we say goodbye to those who now belong to eternity. We press ahead in pursuit of the peace that guided their service. May God bless the memory of those we lost. And may God bless the United States of America.
October 31, 2009
Dads on an Uncertain Mission
October 31, 2009 | 2009 Texas Book Festival | Austin TX
Saving Your Children: Dads on an Uncertain Mission
Saving Your Children: Dads on an Uncertain Mission
(l-r) Antonio Ruiz-Camacho (moderator), Rupert Isaacson, Michael Greenberg, Robert Rummel-Hudson
With Michael Greenberg, author of Hurry Down Sunshine
With Rupert Isaacson, author of The Horse Boy
October 30, 2009
Impermanence
This is the beginning of a busy weekend, beginning with an event tonight at Legacy Books here in Plano, after which we'll pile into Atomo (The Air-Conditioned Hellcar of the Apocalypse) and drive to Austin for the Texas Book Festival on Saturday and then a fun surprise for Schuyler on Sunday that I look forward to telling you about after it happens. (Oo, teaser.) As you may or may not have heard, tomorrow is Halloween, so if you're at the Book Festival, watch for the tiny Amelia Earhart. If there's more than one, go for the Amelia that's speaking Martian.
There's excitement here, and there's nervousness. The other two authors on my panel are best-sellers, after all, and I'm usually somewhat unconvinced of my authorial worth even on a good day. But I'm also looking forward to meeting them and especially to the panel. We're all three fathers with broken kids, and we've all dealt with that role in wildly different ways, but there are similar threads running through all our stories. I think it's going to be an interesting discussion.
Through all the book fanciness and all the advocacy opportunities and the speeches, and in every simple and complicated and euphoric and sad aspect of my world, at the center of it all sits Schuyler. She's the reason for it all. When everything else has faded and gone, there she'll be.
We went to see Tibetan monks as they built a Mandala sand painting in Dallas recently, and I explained the concept of impermanence to Schuyler. She seemed to get it, how nothing lasts forever, how my father grew old (sort of) and died, and how one day Julie and I would as well. She didn't like that at first, but when I also pointed out how one day she would grow old and die, too, and so would HER kids, Schuyler seemed weirdly comforted. I got the sense that on some level, she really got it, she connected with something bigger than us all.
We took Schuyler to see the Amelia Earhart movie, which, I must point out first and foremost, was not a very good film. But it looked beautiful and it hit most of the important big events in a way that Schuyler could grasp, and so for a nine-year-old with an interest in the subject, it wasn't bad. One of the few parts of the film that was really compelling was the very ending. (SPOILER: She disappears, probably as fish food.) We talked at length about that after we left the movie.
"What happened to her?" asked Schuyler. "Did she die?" She accompanied this with her self-created sign language for dying.
Julie and I looked at each other as if to weigh exactly how to answer this, but the thing is, Schuyler already knew that Earhart had disappeared. She did a report on her last year. That answer wasn't very satisfactory to her, however, and she wanted more from us.
"Yeah," I said, just putting it out there for her. "She probably crashed her plane and died. That's really sad, isn't it?" Schuyler nodded, clearly not liking where the discussion had gone.
"But here's the thing," I said. "Amelia Earhart died doing the thing that she wanted to do more than anything else in the world. She wanted to fly airplanes, right? And I'll bet that if you could ask her how she would have wanted to go, she would have said that she wanted to die flying her airplane, doing the thing she loved the most."
She turned this over in her head for a few moments and then nodded. "Yeah," she said.
"The cool thing about Amelia Earhart was that she wanted to be a pilot and fly airplanes, and she made that dream come true. I like that she's your hero, because that's what you're going to do, too. Whatever you decide you want to do, you're going to make it happen. I know that."
Schuyler liked that answer. Well, I like it, too.
There's excitement here, and there's nervousness. The other two authors on my panel are best-sellers, after all, and I'm usually somewhat unconvinced of my authorial worth even on a good day. But I'm also looking forward to meeting them and especially to the panel. We're all three fathers with broken kids, and we've all dealt with that role in wildly different ways, but there are similar threads running through all our stories. I think it's going to be an interesting discussion.
Through all the book fanciness and all the advocacy opportunities and the speeches, and in every simple and complicated and euphoric and sad aspect of my world, at the center of it all sits Schuyler. She's the reason for it all. When everything else has faded and gone, there she'll be.
We went to see Tibetan monks as they built a Mandala sand painting in Dallas recently, and I explained the concept of impermanence to Schuyler. She seemed to get it, how nothing lasts forever, how my father grew old (sort of) and died, and how one day Julie and I would as well. She didn't like that at first, but when I also pointed out how one day she would grow old and die, too, and so would HER kids, Schuyler seemed weirdly comforted. I got the sense that on some level, she really got it, she connected with something bigger than us all.
We took Schuyler to see the Amelia Earhart movie, which, I must point out first and foremost, was not a very good film. But it looked beautiful and it hit most of the important big events in a way that Schuyler could grasp, and so for a nine-year-old with an interest in the subject, it wasn't bad. One of the few parts of the film that was really compelling was the very ending. (SPOILER: She disappears, probably as fish food.) We talked at length about that after we left the movie.
"What happened to her?" asked Schuyler. "Did she die?" She accompanied this with her self-created sign language for dying.
Julie and I looked at each other as if to weigh exactly how to answer this, but the thing is, Schuyler already knew that Earhart had disappeared. She did a report on her last year. That answer wasn't very satisfactory to her, however, and she wanted more from us.
"Yeah," I said, just putting it out there for her. "She probably crashed her plane and died. That's really sad, isn't it?" Schuyler nodded, clearly not liking where the discussion had gone.
"But here's the thing," I said. "Amelia Earhart died doing the thing that she wanted to do more than anything else in the world. She wanted to fly airplanes, right? And I'll bet that if you could ask her how she would have wanted to go, she would have said that she wanted to die flying her airplane, doing the thing she loved the most."
She turned this over in her head for a few moments and then nodded. "Yeah," she said.
"The cool thing about Amelia Earhart was that she wanted to be a pilot and fly airplanes, and she made that dream come true. I like that she's your hero, because that's what you're going to do, too. Whatever you decide you want to do, you're going to make it happen. I know that."
Schuyler liked that answer. Well, I like it, too.
October 24, 2009
Flygirl
Since we'll be in Austin on Halloween for the Texas Book Festival, here's one more reason for you to come. You'll get to meet Amelia Earhart.
October 16, 2009
Wild Things
Schuyler had a day off for parent-teacher conferences today, so Julie and I took the day off as well. After a brief and painless meeting, we went to see Where the Wild Things Are.
And now I have a few thoughts on the film, which was not at all what I expected.
I can't say that Schuyler loved it, not with the wild abandon she has loved other monster movies or kids' movies. She was fascinated, and she wanted to discuss it after, which is always a good sign, but I get the sense that she's still trying to decide how she feels about it. I certainly wouldn't describe Where the Wild Things Are as a monster movie or a fantasy film, but as for whether or not I would call it a kids' movie, I'm not so sure.
It's not a children's movie in the sense that the Wild Things themselves are in any way fantastical or entertaining as mythical creatures. They are very human, in some vaguely neurotic but very familiar ways. But I think that Where the Wild Things Are is VERY much a kids' movie in that it perfectly hits some emotional truths about what childhood is really like, and especially how horribly and confusedly we treat the people we love the most. That these truths come from the mouths and the actions of weird Sendak monsters makes the perspective feel new, and yet totally familiar.
It's easy as adults to forget that childhood can be in large part a scary and frustrating experience, full of insecurity and fear, and that like Max in the film (and to a lesser degree the book), often the only course available to kids who find themselves feeling powerless and afraid is to act out. Not in cute, "rambunctious" ways, but with an intense, feral energy that leaves them even more conflicted and fearful after it's spent.
When Max lashes out, it's a little shocking, not because we've never seen it before, but because the emotions that drive him remind us of our own long-buried childhood experiences. His issues stem from his own complicated family relationships. He loves the people around him, but his young emotions are complicated by his worry for their sadnesses which he cannot fix, and his rage at the complexity of his own place in their lives, and in a world where things aren't fair and the sun will one day die. Max is confused by his own anger, as if the choices he makes are inexplicable to him. You don't have to be ten years old for that to feel real.
When the Wild Things misbehave or simply express their own neurotic impulses badly, it also feels weirdly familiar. If you don't know someone in your real, adult life who can be represented by just about every one of the Wild Things, then I suspect you don't know very many people. More to the point, if you don't recognize significant parts of your own personality in each of the characters, I don't know. Maybe you're just more well-adjusted than I am, but there's also the possibility that you might be living a somewhat unexamined life. If you are open to the experience, I think Where the Wild Things Are presents a rare opportunity to examine that inner self.
Is it the book? No, it's not. If you are wanting to see the book, Where the Wild Things Are is not your movie. (Although really, the good news for you is that the book didn't suddenly cease to exist the day the film opened.) Like the best adaptations, the film takes a starting point from the book and becomes something alive and relevant in its own right.
For little kids, the ones for whom the original book is age-appropriate, this film probably isn't a good choice. Not because it'll be too scary, I don't think (except for one or two sequences, if your kid is especially sensitive), but because it is probably a little more introspective than they are looking for. The Wild Things might be cool monsters, but they're still mostly just talking things out.
Kids who are a little older may take to Where the Wild Things Are, however, in ways that may surprise parents who might fear that it's too dark. If I'd seen this movie when I was ten, I think it would have resonated with me like crazy. It certainly did now.
October 15, 2009
Schuyler's Halloween Preview
The first (and most crucial) parts of Schuyler's Halloween costume arrived in the mail yesterday.
When we began the whole "What do you want to be for Halloween?" dance this year, we assumed it was going to be the same "Fairies vs. Mermaids" struggle we go through every year. (Fairies! Mermaids! WHO WILL TRIUMPH?!?) Both present problems that go beyond just "Really? Again?" For example, good luck finding (or assembling) a fairy costume in which your sweet innocent child doesn't end up looking like some fetish-specializing hooker. And mermaids? No feet. Have fun hopping from door to door like that. Also, again, mermaids don't typically wear a lot on top, you know? No feet, and boobs. It's a father's worst nightmare. Nine year-olds shouldn't be sexy, my friends. They really shouldn't.
This year, Schuyler surprised us by agreeing, very excitedly, that she should go as her beloved Amelia Earhart. This new hero thing began last year, when she was assigned an oral report on a historical figure for school. From the list she was given, Schuyler picked Earhart (with some help from us, I confess -- does the world need another little girl who wants to be Princess Diana?), and ever since, she's shared that little report on her device with anyone who'll listen. So if you've met Schuyler in the past year or so, chances are you've learned a little somethin' somethin' about her hero.
In an interesting bit of serendipity, we recently learned (the quaint old fashioned way: via a television commercial) that there's a movie coming out in a few weeks about Earhart, starring Hilary Swank. So things are going to be all about Amelia Earhart around here for a while. We might get sick of it eventually, but for now, Tinkerbell has taken a back seat to an actual admirable historical figure, and one whose personal philosophy, like Schuyler's, might best be summed up as "You say I can't do that? Fuck you."
We'll actually be at the Texas Book Festival on October 31, so I have no idea what we'll be doing vis-Ã -vis Halloween, but at the very least, the chances are excellent that if you attend my panel, you'll get to see Schuyler in full-on aviatrix mode.
Anyway, here's your Halloween preview.
This year, Schuyler surprised us by agreeing, very excitedly, that she should go as her beloved Amelia Earhart. This new hero thing began last year, when she was assigned an oral report on a historical figure for school. From the list she was given, Schuyler picked Earhart (with some help from us, I confess -- does the world need another little girl who wants to be Princess Diana?), and ever since, she's shared that little report on her device with anyone who'll listen. So if you've met Schuyler in the past year or so, chances are you've learned a little somethin' somethin' about her hero.
In an interesting bit of serendipity, we recently learned (the quaint old fashioned way: via a television commercial) that there's a movie coming out in a few weeks about Earhart, starring Hilary Swank. So things are going to be all about Amelia Earhart around here for a while. We might get sick of it eventually, but for now, Tinkerbell has taken a back seat to an actual admirable historical figure, and one whose personal philosophy, like Schuyler's, might best be summed up as "You say I can't do that? Fuck you."
We'll actually be at the Texas Book Festival on October 31, so I have no idea what we'll be doing vis-Ã -vis Halloween, but at the very least, the chances are excellent that if you attend my panel, you'll get to see Schuyler in full-on aviatrix mode.
Anyway, here's your Halloween preview.
October 12, 2009
Go Team Schuyler
Julie, Schuyler and I ("Team Schuyler", naturally) have decided to participate in the 2009 Childhood Apraxia Walk in Fort Worth, after following a link on organizer Anne Devlin's Facebook page. I realize that you may be struggling with the idea of me actually walking for three miles without there being some kind of automotive emergency or the actual breakdown of civilization. But this is a cause that goes right to the heart of us, because verbal apraxia is one of the manifestations of Schuyler's Bilateral Perisylvian Polymicrogyria.
It's the monster that keeps her from speaking.
Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia.
The Childhood Apraxia of Speech Association of North America or CASANA's "mission is to strengthen the support systems in the lives of children with apraxia, so that each child has their best opportunity to develop speech". CASANA is the only charitable organization in the United States whose exclusive mission is to represent the needs and interests of children and families affected by apraxia.
We're hoping that if you live in the area, you'll join us for the 2009 Childhood Apraxia Walk in Fort Worth. It'll take place on November 15, 2009 at Trinity Park in Fort Worth. It will be a family-friendly walk with the option of a 1-mile or a 3-mile. If you register by October 26, you'll be guaranteed a Walk for Apraxia T-shirt in your size.
If you can't join us, we would appreciate your sponsorship. All proceeds from this event benefit CASANA's apraxia programs and research.
Seriously, we hope you'll be able to join us. You'll get to spend three miles with Schuyler (no more than ten or twenty feet of which will take place in a straight line, I suspect; she walks like a moth flies), and if my old, fat Robba the Hutt body fails me from the extreme trauma of walking three whole miles, you can point and laugh with a clear conscience and non-boomeranging karma.
TEAM SCHUYLER
On Columbus Day
I just realized that today is Columbus Day, and in doing so, I remembered writing about this holiday once. When I went and looked it up, I realized that it was actually six years ago. I can't believe it's been so long; I actually wrote this shortly after Schuyler's diagnosis, when we lived in New Haven, Connecticut.Anyway, I remembered it as being amusing, and you know how I live to amuse, so here it is, along with a short followup.
-----
October 8, 2003
I was looking ahead on Schuyler's social calendar and realized that her day care is going to be closed on the 13th. (Child-nappers, take note: not a good day to grab her.) When I did some probing investigation (i.e. asked someone), I was surprised to learn that the center (and presumedly a bunch of other stuff) will be closed because of Columbus Day.
Columbus Day? I was sort of surprised to learn that Columbus Day is still a national holiday, much less one where people get to stay home and drink beer. I guess I figured that Columbus had been tossed out in a blaze of political correctness, which actually would be fine with me. I'm not sure many of the indigenous populations he "discovered" would be inclined to throw a barbecue in his honor. I can't imagine that "Smallpox Day" is a popular holiday in the Bahamas.
I'm not sure why we even bother with Columbus Day, really. He's not much of a role model, after all. He mooched money off of swishy inbred monarchs in order to finance his expeditions. He was a failure as an administrator of the lands and peoples he subjugated. He was famous in his day as a visionary and a skilled mariner, but history has judged Columbus as a greedy, ruthless imperialist, a bit of a religious kook, and the earliest vanguard of the European plunder of the New World. He was brutal to the native population, even trying at one point to introduce them as slaves to Spain. Perhaps most importantly, he never actually set foot on the North American mainland and was never shaken from his belief that he had reached Asia.
So it would seem that Columbus was a bit of a doofus. ("Hi, I'm Columbus, your host. Welcome to Japan!") But of course, the main problem with celebrating Columbus as the European discoverer of America is that he was beaten to the punch by about five centuries.
We shouldn't be celebrating Columbus Day. We should be celebrating Viking Day.
Vikings reached North America around the year 1000, probably led by either Leif Ericson or his son, and for a decade or so they stomped around and presumedly set shit on fire and engaged in lots of indiscriminate recreational killing. The Vikings even tried to establish a colony for about three years before getting sick of fighting with Indians and returning to pillage boring old Europe again.
Vikings in America! How cool is that? I imagine them getting out of their long Viking boats, with their big beards and their horned helmets and furry boots and big giant monster axes and swords. They jump out of their boats, look around menacingly, and then say "YAR!" and start killing everything and setting shit on fire. They run around killing bears and and biting the heads off of rabbits, and then they see some gentle Indians walking out of the forest bearing gifts of welcome. The Vikings say "YAR!" again and start killing all the Indians. They pillage and burn and destroy, then they sit around a big fire eating some of the animals they slaughtered, wiping their big greasy hands on their new pelts.
I imagine the Indians looking out of the woods at them and thinking, "Oh man. White people. This isn't going to end well."
So yeah. I think Vikings are a much better representation of the American spirit. They sailed around and invaded other countries, burning stuff and killing people and generally being a pain in the ass. They were primitive barbarian badasses who drank wine out of human skulls. And unlike Columbus and the "explorers" who followed him, Vikings didn't pretend like they were doing their victims a favor. They pillaged, but they were up front about it, at least. I think that as Americans, we've sort of lost our way in that respect.
Viking Day. Think about it. Yar!
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June 9, 2004
I'm always interested and amused at the unexpected things that draw people's ire from my writing.
Do you remember the entry (one of my favorites, honestly; it's one of the very few times that I managed to crack myself up) where I wrote about Columbus Day and the Vikings? I wrote about how the Vikings beat Columbus to the New World by about five centuries and made better role models for Americans anyway.
Now, this wasn't an entry that I expected to receive much irritated email about. If anything, I thought I might get some sort of "what's a mattah YOU?" email from some proud Italian-American out there (remember that episode of The Sopranos?), but what I DIDN'T expect to get instead was a stern correction from a Viking re-enactor (I swear to God) who wasn't happy about my representation of Vikings. They didn't wear horned helmets, she said, and didn't rape and kill indiscriminately, and CERTAINLY didn't drink wine from skulls. (She could have been right about that last part, I might have made it up.)
I guess my point is that I never know what's going to piss someone off, and it is honestly one of the reasons I keep writing online. It's like some sort of wacky social experiment that I'm carrying out on YOU, my Slobbering Minions. (I did have someone unsubscribe from my notify list because she didn't like being called a Slobbering Minion. That was perhaps less surprising than the Viking thing, now that I think about it.)
Incidentally, I'll admit that the wine drinking from human skulls thing was probably bogus, but I'm standing firm on the horned helmets. I mean, how else would people know that the barbarians burning down their village were actually Vikings? It's not like you'd want to go to all that trouble, only to have someone ask you, "Hey, who are you guys? Visigoths?"
It's all about the uniform.
October 9, 2009
The Boomtown Curse continues (or "Why does Jay Leno hate America?")
You know, sometimes I hate being right.
The rest of you can get all worked up about Obama and the Nobel Peace Prize today. All of my tinfoil hat-wearing outrage is directed at NBC, the network which is, if I hadn't made this clear yet, DEAD TO ME.
NBC Cancels Well-Regarded ‘Southland’
Today, NBC canceled one of the best-reviewed shows of recent years, the police drama “Southland,” before it had a chance to get on the air for its second season.
The show, which premiered in the spring and had a strong start in the ratings, though it struggled in its later episodes, had six new episodes produced for the new season. But NBC delayed its start date from mid-September until Oct. 23. NBC has been filling that hour — 9 p.m. on Fridays — with the newsmagazine show “Dateline NBC.”
Now NBC has dropped “Southland” altogether. Ratings for Friday shows have become universally low, and expensive dramas seem to be faltering especially on Fridays. “Dateline” can be produced for a fraction of the cost.
“Southland” started as a 10 p.m. show on Thursdays, and its style was consistent with others that have played there for decades. But NBC no longer has any 10 p.m. periods for drama because it has moved the new “Jay Leno Show” into that slot every weeknight. The style of “Southland” was largely distinguished by gritty police work and sometimes dark, troubled characters — not unlike previous NBC hits like “Hill Street Blues.”
The rest of you can get all worked up about Obama and the Nobel Peace Prize today. All of my tinfoil hat-wearing outrage is directed at NBC, the network which is, if I hadn't made this clear yet, DEAD TO ME.
September 30, 2009
Texas Book Festival schedule announced
Saving Your Children: Dads on an Uncertain Mission
with Michael Greenberg, Rupert Isaacson, and Robert Rummel-Hudson
Date: Saturday, October 31, 2009
Time: 12:00 - 1:00
Location: Capitol Extension Room E2.030
Being a parent is hard enough without having to cope with a sudden, inexplicable illness striking your child, challenging you in ways that seem inhumane. Even with today's modern medical advancements, there are still little to no explanations for what causes autism or severe psychotic episodes. In this session, three fathers who've had to confront such confounding illnesses in their children discuss their long, often arduous journeys to understanding and dealing with such issues that seem to have no explanation behind them. Michael Greenberg's teenage daughter was struck mad on a New York City street, Robert Rummel-Hudson's beautiful infant daughter soon revealed that a monster within her had stolen her ability to speak, and Rupert Isaacson seeks the guidance of Mongolian shamans as he tries to keep his five-year-old autistic son from unraveling completley. Antonio Ruiz-Camacho, an experienced journalist who is currently writing a memoir about his upbringing as a part of a Mexican mixed-class family and his relationship with his father, will moderate the session.
Authors:
Robert Rummel-Hudson
Rupert Isaacson
Michael Greenberg
Moderated by: Antonio Ruiz-Camacho
with Michael Greenberg, Rupert Isaacson, and Robert Rummel-Hudson
Date: Saturday, October 31, 2009Time: 12:00 - 1:00
Location: Capitol Extension Room E2.030
Being a parent is hard enough without having to cope with a sudden, inexplicable illness striking your child, challenging you in ways that seem inhumane. Even with today's modern medical advancements, there are still little to no explanations for what causes autism or severe psychotic episodes. In this session, three fathers who've had to confront such confounding illnesses in their children discuss their long, often arduous journeys to understanding and dealing with such issues that seem to have no explanation behind them. Michael Greenberg's teenage daughter was struck mad on a New York City street, Robert Rummel-Hudson's beautiful infant daughter soon revealed that a monster within her had stolen her ability to speak, and Rupert Isaacson seeks the guidance of Mongolian shamans as he tries to keep his five-year-old autistic son from unraveling completley. Antonio Ruiz-Camacho, an experienced journalist who is currently writing a memoir about his upbringing as a part of a Mexican mixed-class family and his relationship with his father, will moderate the session.
Authors:
Robert Rummel-Hudson
Rupert Isaacson
Michael Greenberg
Moderated by: Antonio Ruiz-Camacho
September 27, 2009
On Limits
I just read post by Anne Newman on the "Working Parents" blog, part of the online edition of BusinessWeek, titled "Do Kids with Disabilities Strain or Strengthen Our Schools?".
The bulk of the post involved Dan Habib, the father and filmmaker responsible for Including Samuel, which tells the story of his family's fight for inclusion for his son Samuel, who has cerebral palsy. The BusinessWeek post asks Habib about public acceptance of inclusion, and the citizens who are quoted sound identical to many whom I've heard from on the subject, including in the comments to my own blog. Habib's answer is brilliant.
"People are not limited by their disability, they are limited by a lack of opportunity."
The bulk of the post involved Dan Habib, the father and filmmaker responsible for Including Samuel, which tells the story of his family's fight for inclusion for his son Samuel, who has cerebral palsy. The BusinessWeek post asks Habib about public acceptance of inclusion, and the citizens who are quoted sound identical to many whom I've heard from on the subject, including in the comments to my own blog. Habib's answer is brilliant.
But in this economy, just how much enthusiasm is Dan getting for inclusion? Not everyone is a fan—not by a long shot, judging by some of the comments on my blog last May. "Why do we even bother paying for education for these kids?," wrote a commenter named Lilly. "Their parents chose to have kids and now their disability and special needs amount to a rise in taxes. Their parents just get a lawyer and fight and fight until the school district ends up paying for special programs. Why? Why not divert the funds for gifted and talented students instead of kids who will need societal support their whole life."
Lilly's anger about how taxpayers' money is spent is not so uncommon. How many of us have heard the same complaint in our own school districts? And how many Lillys does Dan run into on his?
I pitched that question to him by e-mail, and he replied with a list of "myths and realities" about inclusion. One myth, he says, is the notion that taxpayers are throwing away money by educating kids with disabilities. His response: "How can Lilly or anyone else predict which child will contribute to our society? Would Lilly really argue that Bernie Madoff … added more to the world than the physicist Stephen Hawking (who wrote his greatest work after he was severely disabled by ALS)? How about Albert Einstein (widely thought to have had Asperger Syndrome), Helen Keller (blind, deaf, and unable to speak) and Vincent Van Gogh (mentally ill)? People are not limited by their disability, they are limited by a lack of opportunity."
"People are not limited by their disability, they are limited by a lack of opportunity."
I could try for a year to find the words to describe my own philosophy of inclusion, and I couldn't do better than that.
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