Having written about Schuyler's impending IEP meeting, I suppose I should give a brief follow-up. The short version is that it felt like a very positive meeting, particularly from Schuyler's special education team and her therapists. Her elementary school team did a great job of preparing a plan for her transition, and the team leader from her new school was outstanding. She was incredibly positive, and she listened to us, really listened. After the meeting she sat down with Julie and me for an extremely candid chat, and we walked away feeling like we'd been heard. For parents of a kid with a disability who are trying to navigate the public school system, that's no small thing at all.
That's all I really have to say about it for now, although there may be another post about one extremely troubling aspect of the meeting coming soon after Schuyler's last day of school, depending on whether or not Julie and I are still pissed by then. (Smart money says watch for it.) There are still a lot of anxiety-inducing aspects of the transition to middle school to keep us up at night, everything from mean girls to mainstreaming to marimbas, but coming out of this meeting, we felt some real excitement and optimism for the future. And again, that is no small thing.
May 26, 2011
May 24, 2011
Not Acceptable
I think the most effective way to get people to stop using the "r word" is not so much to try to ban its use or impose some kind of embargo on it. That approach just seems to bring out the worst kinds of entitled, obtuse, "Fight the Man" arguments about what the word technically means and how we should just make the choice not to be offended, etc. Trust me, I know.
I like this PSA because it makes what I believe is a more effective point, that you ought to care how much your words hurt someone else, but even if you don't, calling someone a retard simply makes you look like a bigot. Or rather, it alerts the world that you ARE in fact a bigot.
Thanks to the Spread the Word to End the Word campaign (sponsored by Special Olympics and Best Buddies), and particularly to Lauren Potter and Jane Lynch. I like this PSA very much.
(I'm still not going to watch Glee, though. Sorry.)
I like this PSA because it makes what I believe is a more effective point, that you ought to care how much your words hurt someone else, but even if you don't, calling someone a retard simply makes you look like a bigot. Or rather, it alerts the world that you ARE in fact a bigot.
Thanks to the Spread the Word to End the Word campaign (sponsored by Special Olympics and Best Buddies), and particularly to Lauren Potter and Jane Lynch. I like this PSA very much.
(I'm still not going to watch Glee, though. Sorry.)
May 23, 2011
Who She Is
Tomorrow is Schuyler's ARD meeting. We'll meet with her school team and talk about her year, and plan the goals for next year with a whole new team at a whole new school. These meetings at this school are usually pretty straight-forward; unlike a lot of parents, we've never had to beg for services, after all. Until last year, they were mostly an exercise in formality. We were all on the same page.
It changed, subtly, last spring when the district diagnostician began her now-infamous quest to retest Schuyler's IQ in order to get a lower score, the score she believed would be more accurate, the one that would classify Schuyler as mentally retarded. She did so without dissent from anyone else on the team. Anyone but us, anyway. It was all done with the best of intentions, I know. But last year, we suddenly felt like we saw one little girl and they saw another. It was hard to objectively weigh their opinions, backed by professional detachment, and ours, loaded with overbelief but also a depth of experience unique to parents and family, a familiarity that can't be known to even the most dedicated professional teacher or anyone else who goes home at the end of the day and moves on at the end of the year.
Tomorrow we go back, and we're hopeful that we'll be back to a place where we're all mostly on the same page and we're approaching Schuyler for who she is, not trying to redefine her as something that fits more easily into a box or a checklist or preconceived idea. That's what we hope for. That's also the expectation we try to bring, with a kind of polite fierceness.
None of this changes who Schuyler is. And it only changes who she may become if we let it, if any of us who work for her do so with the intention of making her fit. She HAS to fit, and yet she CAN'T fit. If that sounds like an unresolvable paradox, you're right, you're absolutely right. If it sounds like a familiar unresolvable paradox, I'll bet you're the parent of a different child, a broken child, like ours. Flawed and neuro-atypical, and yet unique and all their own.
Schuyler is who she is. If you want to know her, you don't need a diagnostic tool or years of impressive yet often irrelevant teaching experience. You need only to watch, and listen, and learn.
You'll figure out quickly that she wants friends, she wants them more than anything, even if they are in fact the hardest thing in the world for her to have, more difficult to acquire even than that goddamn marimba.
You'll learn that she has some unshatterable loves. Root beer. Lady Gaga. Dogs. Squinkies. Chick-fil-A. Fake farts in the bathtub. Summer spent in the pool. Painting her fingernails. Sea monsters and mermaids. Maxie. Referring to the police as "The Fuzz", "The Po Po" or "Johnny Law". Rattle-the-windows thunderstorms. Hot-air balloons. Mismatched socks.
You'll learn that she moves like the Tasmanian Devil, never in a straight line, rarely gracefully, and with a casual disregard for the personal space or safety of the people around her. You'll see her boundless energy, and you might envy it even as you worry about the breakables on the shelves around her.
You'll discover how important family relationships are to her. You'll watch her figure them out, like a complex cast of characters, and you'll see how she obsesses when something doesn't fit, like the one dead grandparent she'll never know. You'll see how much she wants the sister than she'll never have, the one she CAN never have.
If you watch Schuyler write, you'll see that she is behind her peers, but you might also see how her mind works in ways not devoid of logic. Sometimes, very very occasionally, you'll see a kind of Martian poetry in her written words.
Schuyler loves disguise. She hangs onto all her old Halloween costumes and mixes their parts. She loves wigs and masks and capes and hats. It is tempting to think that she is trying to be someone else, trying to adopt another identity, but really, I think most little girls her age are exactly the same way.
Schuyler is never jaded. Ever.
Spend some time with Schuyler and you'll find that she loves games, even if she balks at the rules. She plays Uno but hates to lose. She loves Rock Paper Scissors, but if she falls behind, she's likely to pull out something like a fist with her thumb pointed up ("Bomb"), or wiggly, menacing fingers ("Tarantula"). She loves to play "Real or Pretend", especially when there are qualifiers. Mermaids and fairies and angels and dragons are pretend. Dinosaurs are real. Dinosaurs that walk around eating people in the street are pretend. Cats are real. Talking cats are pretend.
Monsters are pretend. Except when they're not. She's ready for those, too.
It changed, subtly, last spring when the district diagnostician began her now-infamous quest to retest Schuyler's IQ in order to get a lower score, the score she believed would be more accurate, the one that would classify Schuyler as mentally retarded. She did so without dissent from anyone else on the team. Anyone but us, anyway. It was all done with the best of intentions, I know. But last year, we suddenly felt like we saw one little girl and they saw another. It was hard to objectively weigh their opinions, backed by professional detachment, and ours, loaded with overbelief but also a depth of experience unique to parents and family, a familiarity that can't be known to even the most dedicated professional teacher or anyone else who goes home at the end of the day and moves on at the end of the year.
Tomorrow we go back, and we're hopeful that we'll be back to a place where we're all mostly on the same page and we're approaching Schuyler for who she is, not trying to redefine her as something that fits more easily into a box or a checklist or preconceived idea. That's what we hope for. That's also the expectation we try to bring, with a kind of polite fierceness.
None of this changes who Schuyler is. And it only changes who she may become if we let it, if any of us who work for her do so with the intention of making her fit. She HAS to fit, and yet she CAN'T fit. If that sounds like an unresolvable paradox, you're right, you're absolutely right. If it sounds like a familiar unresolvable paradox, I'll bet you're the parent of a different child, a broken child, like ours. Flawed and neuro-atypical, and yet unique and all their own.
Schuyler is who she is. If you want to know her, you don't need a diagnostic tool or years of impressive yet often irrelevant teaching experience. You need only to watch, and listen, and learn.
You'll figure out quickly that she wants friends, she wants them more than anything, even if they are in fact the hardest thing in the world for her to have, more difficult to acquire even than that goddamn marimba.
You'll learn that she has some unshatterable loves. Root beer. Lady Gaga. Dogs. Squinkies. Chick-fil-A. Fake farts in the bathtub. Summer spent in the pool. Painting her fingernails. Sea monsters and mermaids. Maxie. Referring to the police as "The Fuzz", "The Po Po" or "Johnny Law". Rattle-the-windows thunderstorms. Hot-air balloons. Mismatched socks.
You'll learn that she moves like the Tasmanian Devil, never in a straight line, rarely gracefully, and with a casual disregard for the personal space or safety of the people around her. You'll see her boundless energy, and you might envy it even as you worry about the breakables on the shelves around her.
You'll discover how important family relationships are to her. You'll watch her figure them out, like a complex cast of characters, and you'll see how she obsesses when something doesn't fit, like the one dead grandparent she'll never know. You'll see how much she wants the sister than she'll never have, the one she CAN never have.
If you watch Schuyler write, you'll see that she is behind her peers, but you might also see how her mind works in ways not devoid of logic. Sometimes, very very occasionally, you'll see a kind of Martian poetry in her written words.
Schuyler loves disguise. She hangs onto all her old Halloween costumes and mixes their parts. She loves wigs and masks and capes and hats. It is tempting to think that she is trying to be someone else, trying to adopt another identity, but really, I think most little girls her age are exactly the same way.
Schuyler is never jaded. Ever.
Spend some time with Schuyler and you'll find that she loves games, even if she balks at the rules. She plays Uno but hates to lose. She loves Rock Paper Scissors, but if she falls behind, she's likely to pull out something like a fist with her thumb pointed up ("Bomb"), or wiggly, menacing fingers ("Tarantula"). She loves to play "Real or Pretend", especially when there are qualifiers. Mermaids and fairies and angels and dragons are pretend. Dinosaurs are real. Dinosaurs that walk around eating people in the street are pretend. Cats are real. Talking cats are pretend.
Monsters are pretend. Except when they're not. She's ready for those, too.
May 20, 2011
Just another manic Doomsday
"No man has learned anything rightly, until he knows that every day is Doomsday." -- Ralph Waldo EmersonIt's a popular trend at the moment to make fun of all the folks (a surprising number, honestly, although I don't believe I know any of them personally, perhaps not so surprisingly) who believe that tomorrow will bring the End of Days. And I'm not going to lie, I've been enjoying it just as much as the next smartass. Large scale kookery is a gift for snotty people like me.
But then, it's worth noting that I get a pretty regular stream of email and comments from Christians who seem to take it personally that we're not raising Schuyler to be a Christian. Some of you take it almost as a given that this represents a failure in parenting. I am challenged regularly on whether or not it's fair to Schuyler, denying her a Christian life or a church family. Oddly, I never get emails from Jewish or Islamic readers asking why I am denying her the experience of their faith. But there are more than a few Christians who behave as if they are entitled to take a stab at bringing my child into the flock.
It even happened at Schuyler's school recently. I caught some grief from Christian readers a couple of years ago when I expressed displeasure because a teacher gave Schuyler an angel sticker, leaving us to explain what that meant. Those same folks will be equally irritated to hear that we were deeply annoyed a few weeks ago when one of Schuyler's public school teachers told her that when people die, they turn into angels and go to Heaven.
"What's the harm in that?" I can already hear it. We're overreacting, they'll say, just like they did before. They can't see that it's problematic for us because suddenly we are put in the position of having to address issues of religion and faith with Schuyler, not because we think she's ready (because she's absolutely not), but because someone else decided she is. It doesn't matter that we are her parents. A higher power is calling, after all. And to a Christian who believes all this, it doesn't seem unreasonable at all, I suppose.
If you've grown up with it, the basic points of the Christ story seem perfectly plausible. I keep reading how mainstream Christians are upset about this rapture thing because it makes their religion look ridiculous or even cult-like. The Bible says we can't know the day or the hour that the Apocalypse will arrive, after all. Christians don't want their perfectly reasonable faith being tarnished by silliness.
But here's the thing. To those of us who aren't believers and who aren't raising our kids as Christians, it's no more or less silly than the rest of it. It's hard for us to distinguish how a virgin birth or a resurrection story are perfectly believable, but the end of the world? That's just crazy talk.
The difference with the rapture, particularly when you attach a date to it, is that unlike the rest of the stories, this part is empirically disprovable. If you're reading this on Sunday, you already know that it was bogus. (If you're actually waiting until Sunday to declare its goofiness, I salute your objectivity.) It's uncomfortable for some Christians because it's easily dispatched with.
We are an agnostic family. That's how we're raising Schuyler, which (in addition to not being a threat to Christianity) is our choice and our privilege, just like any other family. That we are doing so in a very Christian community is a challenge that we've knowingly taken on, but non-Christian families do the same thing all over the country, and they all face this kind of thing on some level or another. It's not a tragedy. It's not a burden that we bear. It's a pain in the ass, at the very worst.
But if the idea of the holiest of you flying up into the air tomorrow strikes us as amusing, that's just the price you're going to have to pay. You've made your choice, which to us looks no more or less valid than choosing to worship Odin or Zeus or a character on a box of breakfast cereal. To you, my choice seems sad. To me, yours looks silly. I don't see that changing any time soon. Maybe on Saturday, but I'm not holding my heathen breath.
But then, it's worth noting that I get a pretty regular stream of email and comments from Christians who seem to take it personally that we're not raising Schuyler to be a Christian. Some of you take it almost as a given that this represents a failure in parenting. I am challenged regularly on whether or not it's fair to Schuyler, denying her a Christian life or a church family. Oddly, I never get emails from Jewish or Islamic readers asking why I am denying her the experience of their faith. But there are more than a few Christians who behave as if they are entitled to take a stab at bringing my child into the flock.
It even happened at Schuyler's school recently. I caught some grief from Christian readers a couple of years ago when I expressed displeasure because a teacher gave Schuyler an angel sticker, leaving us to explain what that meant. Those same folks will be equally irritated to hear that we were deeply annoyed a few weeks ago when one of Schuyler's public school teachers told her that when people die, they turn into angels and go to Heaven.
"What's the harm in that?" I can already hear it. We're overreacting, they'll say, just like they did before. They can't see that it's problematic for us because suddenly we are put in the position of having to address issues of religion and faith with Schuyler, not because we think she's ready (because she's absolutely not), but because someone else decided she is. It doesn't matter that we are her parents. A higher power is calling, after all. And to a Christian who believes all this, it doesn't seem unreasonable at all, I suppose.
If you've grown up with it, the basic points of the Christ story seem perfectly plausible. I keep reading how mainstream Christians are upset about this rapture thing because it makes their religion look ridiculous or even cult-like. The Bible says we can't know the day or the hour that the Apocalypse will arrive, after all. Christians don't want their perfectly reasonable faith being tarnished by silliness.
But here's the thing. To those of us who aren't believers and who aren't raising our kids as Christians, it's no more or less silly than the rest of it. It's hard for us to distinguish how a virgin birth or a resurrection story are perfectly believable, but the end of the world? That's just crazy talk.
The difference with the rapture, particularly when you attach a date to it, is that unlike the rest of the stories, this part is empirically disprovable. If you're reading this on Sunday, you already know that it was bogus. (If you're actually waiting until Sunday to declare its goofiness, I salute your objectivity.) It's uncomfortable for some Christians because it's easily dispatched with.
We are an agnostic family. That's how we're raising Schuyler, which (in addition to not being a threat to Christianity) is our choice and our privilege, just like any other family. That we are doing so in a very Christian community is a challenge that we've knowingly taken on, but non-Christian families do the same thing all over the country, and they all face this kind of thing on some level or another. It's not a tragedy. It's not a burden that we bear. It's a pain in the ass, at the very worst.
But if the idea of the holiest of you flying up into the air tomorrow strikes us as amusing, that's just the price you're going to have to pay. You've made your choice, which to us looks no more or less valid than choosing to worship Odin or Zeus or a character on a box of breakfast cereal. To you, my choice seems sad. To me, yours looks silly. I don't see that changing any time soon. Maybe on Saturday, but I'm not holding my heathen breath.
May 14, 2011
Seeing God, perhaps
"[We] see the face of God within the disabled. Their presence is a sign of God, who has chosen [quoting St. Paul] 'the foolish in order to confound the strong, the proud and the so-called wise of our world.' And so those we see as weak or marginalized are, in fact, the most worthy and powerful among us: they bring us closer to God." -- Jean Vanier, "Our Life Together"
I didn't know what to think the first time I read these words by Jean Vanier. They were quoted in Ian Brown's The Boy in the Moon, an extraordinary memoir written by the father of a profoundly disabled son. Brown's story is different from mine; his son Walker's disability is as extreme as Schuyler's is subtle. And yet in reading his words, I am struck by the similarities in our feelings about our beautiful broken children, extending even to some of the language we use as descriptors.
(Ironically, we differ slightly on the now-tiresome "r word", which he uses in some circumstances not related to people. But while I choose not to use the word as he does, I also recognize the unique position of the special needs parent to repurpose words like that, and the guilty pleasure that comes from the reactions of typical parents when faced with this forbidden word from the mouth of such a parent. I totally get that.)
When I read the quote by Vanier, it felt a little like some of the well-meaning but pretty uniformly awful things we've been told for years, about how kids like Schuyler are here to teach the rest of us something, or that she came into our lives because we were super special wonderful parents, or that God never gives us more than we can handle. (That last one is particularly heinous; ask any parent of a different child, and they'll be able to name people of their own acquaintance who have been given much more than they can bear, whether by a cruel God or wicked chance.)
But when you look deeper, it makes a kind of sense. A writer friend of mine was raised as a Quaker, and to her it was completely familiar. To the Quakers, God is a light that exists in every human, an intrinsic quality rather than an external force (ie. grumpy man in the sky, bossing everyone around and breaking stuff when he gets mad). We find God by seeking that light in others. Finding it within those whose lives seem the most remote from our own, and relating to those people instead of marginalizing them or running, that's a real path to seeing God.
I like that. I'm not sure I subscribe to it from a spiritual perspective, although it feels valid to me. My own spirituality runs outside of religion, as you probably already know. Recently, I received another critical remark about my beliefs. "The atheist pulling out the phrase 'Child of God' only when it suits you is so very distasteful." Of course, I have never claimed to be an atheist, not once, but there's a certain amount of dismissiveness that comes in response to calling oneself an agnostic. This commenter doesn't think I'm an atheist. But she does know that I'm not a Christian, and in her eyes, that's not all that different from believing nothing at all. Not being a Christian is offensive to a great many people, as is the idea that Schuyler isn't here to teach us all how to be better people.
For his part, Ian Brown doesn't believe that his son Walker represents the face of God. He sees instead the face of what it means to be a human being, both in his son's beauty and his brokenness. He sees the depth and complexity of his own love for his son, who has taught him (and I can't tell you how much Julie and I love this phrase, or how many times in the last week we've quoted it to each other and have wanted to quote it to people who are in our world and yet very much not) "the difference between a real problem and a mere complaint". For him, his son is a mirror.
I like that, too. In the faces of kids with disabilities, whether extreme like Walker Brown or mostly invisible and insidious like Schuyler, we are presented with the opportunity to truly explore what it means to be human. Brown says that Jean Vanier believes the severely afflicted force us to face two difficult questions. "Do you consider me human? Do you love me?" He believes, as I adamantly do as well, that as we meet people with disability in their own world, our answers to those questions evolve and solidify. We start, shamefully, with fear, of their appearance and the way they behave, and, I'd suggest, of the proof of the frailty of being human and how it can strike any of us, particularly our children. We move on to pity and to the stage where we help them and show them respect, but still regard them on some level as inferior.
It is only when we enter into real relationships of authentic depth that we are transformed by the broken among us. It is then, Vanier believes, that "they bring us closer to God".
As an agnostic, I nevertheless believe, on some level, that this is true. God? Maybe. It certainly brings us closer to understanding the truth of humanity, the hard-to-grasp reality that all of us have worth, and that worth is intrinsic, not something determined by the rest of us, or by an outside divine force. Other cultures understand that better, I think. In shamanistic societies, children who would be diagnosed as autistic or developmentally delayed or ADHD and medicated within an inch of their lives in this country are identified and groomed from an early age to serve as shamans, holy and in touch with the universe on a unique plane that is denied the rest of us. Is that wrong? Is it ridiculous or primitive? Or does it recognize a fact mostly lost on Western society, that even the most profoundly broken among us have value, and it is up to us to see that, not them to prove it?
In an interview with NPR, Ian Brown said something that hit close to home for me. It felt like truth, a cautionary truth.
I fear very much that I have become what he calls a "disability masochist", although honestly, I wonder sometimes how one avoids that trap. But for me, in ways that are probably much more difficult for parents with as impaired of a child as Brown has, it's more complicated than just making my disabled child the center of my life. I have done that, but it's not always or even mostly about her disability. In part, it happens because of the all-encompassing, complicated, enriching but enslaving love I feel for Schuyler. I suspect it's also because in trying so hard to understand the things that she desperately wants to tell us, we pay much closer attention to Schuyler than most parents do to their typical children. Schuyler doesn't have throw-away statements or everyday sentiments. We listen with every ounce of attention that we have, we strain to understand, and in doing so, we are treated to peeks inside a place unlike that of any other person in the world. Perhaps literally so.
There are moments, fleeting and wonderful, where it is possible, not to forget exactly, but to put Schuyler's disability into the background. It's always there, but sometimes it's unimportant, and what we are left with is a very simple (but of course not simple at all) joy of her existence. We can stop trying to make her fit and just experience who she is.
It happens, although the world has a funny way of popping that bubble. Last night, as we ate dinner at a fast food place, Schuyler was unusually joyful and chattery. I love when she's like that; I rarely try to stifle her in those moments, even when I can see, as I did last night, that she is drawing attention. This time it was a little girl, a few years younger than Schuyler, sitting at the table next to us. As we got up to throw away our trash, I heard her ask her father if Schuyler was retarded.
And thus the world pushes back in.
Schuyler and her broken friends aren't a gift, from God or anyone else. They exist on their own terms, as human as you or me, but they do give us the chance to look into something bigger, God if you like, or perhaps simply our own humanity, with all the ugliness and beauty inherent in our selves. We have a choice, whether to listen or to step back in fear and ignorance. I can only say that one of those choices is, even to an agnostic like myself, indescribably miraculous.
I didn't know what to think the first time I read these words by Jean Vanier. They were quoted in Ian Brown's The Boy in the Moon, an extraordinary memoir written by the father of a profoundly disabled son. Brown's story is different from mine; his son Walker's disability is as extreme as Schuyler's is subtle. And yet in reading his words, I am struck by the similarities in our feelings about our beautiful broken children, extending even to some of the language we use as descriptors.
(Ironically, we differ slightly on the now-tiresome "r word", which he uses in some circumstances not related to people. But while I choose not to use the word as he does, I also recognize the unique position of the special needs parent to repurpose words like that, and the guilty pleasure that comes from the reactions of typical parents when faced with this forbidden word from the mouth of such a parent. I totally get that.)
When I read the quote by Vanier, it felt a little like some of the well-meaning but pretty uniformly awful things we've been told for years, about how kids like Schuyler are here to teach the rest of us something, or that she came into our lives because we were super special wonderful parents, or that God never gives us more than we can handle. (That last one is particularly heinous; ask any parent of a different child, and they'll be able to name people of their own acquaintance who have been given much more than they can bear, whether by a cruel God or wicked chance.)
But when you look deeper, it makes a kind of sense. A writer friend of mine was raised as a Quaker, and to her it was completely familiar. To the Quakers, God is a light that exists in every human, an intrinsic quality rather than an external force (ie. grumpy man in the sky, bossing everyone around and breaking stuff when he gets mad). We find God by seeking that light in others. Finding it within those whose lives seem the most remote from our own, and relating to those people instead of marginalizing them or running, that's a real path to seeing God.
I like that. I'm not sure I subscribe to it from a spiritual perspective, although it feels valid to me. My own spirituality runs outside of religion, as you probably already know. Recently, I received another critical remark about my beliefs. "The atheist pulling out the phrase 'Child of God' only when it suits you is so very distasteful." Of course, I have never claimed to be an atheist, not once, but there's a certain amount of dismissiveness that comes in response to calling oneself an agnostic. This commenter doesn't think I'm an atheist. But she does know that I'm not a Christian, and in her eyes, that's not all that different from believing nothing at all. Not being a Christian is offensive to a great many people, as is the idea that Schuyler isn't here to teach us all how to be better people.
For his part, Ian Brown doesn't believe that his son Walker represents the face of God. He sees instead the face of what it means to be a human being, both in his son's beauty and his brokenness. He sees the depth and complexity of his own love for his son, who has taught him (and I can't tell you how much Julie and I love this phrase, or how many times in the last week we've quoted it to each other and have wanted to quote it to people who are in our world and yet very much not) "the difference between a real problem and a mere complaint". For him, his son is a mirror.I like that, too. In the faces of kids with disabilities, whether extreme like Walker Brown or mostly invisible and insidious like Schuyler, we are presented with the opportunity to truly explore what it means to be human. Brown says that Jean Vanier believes the severely afflicted force us to face two difficult questions. "Do you consider me human? Do you love me?" He believes, as I adamantly do as well, that as we meet people with disability in their own world, our answers to those questions evolve and solidify. We start, shamefully, with fear, of their appearance and the way they behave, and, I'd suggest, of the proof of the frailty of being human and how it can strike any of us, particularly our children. We move on to pity and to the stage where we help them and show them respect, but still regard them on some level as inferior.
It is only when we enter into real relationships of authentic depth that we are transformed by the broken among us. It is then, Vanier believes, that "they bring us closer to God".
As an agnostic, I nevertheless believe, on some level, that this is true. God? Maybe. It certainly brings us closer to understanding the truth of humanity, the hard-to-grasp reality that all of us have worth, and that worth is intrinsic, not something determined by the rest of us, or by an outside divine force. Other cultures understand that better, I think. In shamanistic societies, children who would be diagnosed as autistic or developmentally delayed or ADHD and medicated within an inch of their lives in this country are identified and groomed from an early age to serve as shamans, holy and in touch with the universe on a unique plane that is denied the rest of us. Is that wrong? Is it ridiculous or primitive? Or does it recognize a fact mostly lost on Western society, that even the most profoundly broken among us have value, and it is up to us to see that, not them to prove it?
In an interview with NPR, Ian Brown said something that hit close to home for me. It felt like truth, a cautionary truth.
"I think a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the only important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it. It's like anybody who concentrates on one point of view and only one point of view. If you contradict them, they get nasty. You see it in political life every day. You often hear from these people something that drives me mad. It's one of the reasons I didn't want to write a book like this, and one of the reasons it took me so long to write the book was because I didn't want to write a 'misery memoir.' These misery memoirs, in addition to being badly written, you get the same sentimentality all the time: these are very special children, given to very special parents, by a very special God. The God thing is not often there, but it's often tacked on. And I think to myself, if Walker is God's idea of a gift, then God needs to read Emily Post. Because a jar of jam or a bottle of wine would have been fine, thank you very much."
I fear very much that I have become what he calls a "disability masochist", although honestly, I wonder sometimes how one avoids that trap. But for me, in ways that are probably much more difficult for parents with as impaired of a child as Brown has, it's more complicated than just making my disabled child the center of my life. I have done that, but it's not always or even mostly about her disability. In part, it happens because of the all-encompassing, complicated, enriching but enslaving love I feel for Schuyler. I suspect it's also because in trying so hard to understand the things that she desperately wants to tell us, we pay much closer attention to Schuyler than most parents do to their typical children. Schuyler doesn't have throw-away statements or everyday sentiments. We listen with every ounce of attention that we have, we strain to understand, and in doing so, we are treated to peeks inside a place unlike that of any other person in the world. Perhaps literally so.
There are moments, fleeting and wonderful, where it is possible, not to forget exactly, but to put Schuyler's disability into the background. It's always there, but sometimes it's unimportant, and what we are left with is a very simple (but of course not simple at all) joy of her existence. We can stop trying to make her fit and just experience who she is.
It happens, although the world has a funny way of popping that bubble. Last night, as we ate dinner at a fast food place, Schuyler was unusually joyful and chattery. I love when she's like that; I rarely try to stifle her in those moments, even when I can see, as I did last night, that she is drawing attention. This time it was a little girl, a few years younger than Schuyler, sitting at the table next to us. As we got up to throw away our trash, I heard her ask her father if Schuyler was retarded.
And thus the world pushes back in.
Schuyler and her broken friends aren't a gift, from God or anyone else. They exist on their own terms, as human as you or me, but they do give us the chance to look into something bigger, God if you like, or perhaps simply our own humanity, with all the ugliness and beauty inherent in our selves. We have a choice, whether to listen or to step back in fear and ignorance. I can only say that one of those choices is, even to an agnostic like myself, indescribably miraculous.
May 12, 2011
Same as it ever was
So the results of Schuyler's EEG are in, and they are... exactly what I thought they might be. She had no seizures during the 72-hour EEG, as we suspected. The choking incident wasn't triggered by anything neurological, and no seizures were recorded during waking hours. We haven't observed anything suspicious since probably a week before the EEG, so we weren't surprised. It's not the neurologist's fault. Schuyler's monster is apparently on Spring Break.
Well, that's not entirely true. Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)
These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.
Anyway, the neurologist believes that what we've observed in the past sound very much like seizures, so we'll continue to watch for them and continue to wait and worry and all that. We know a little more about what's happening inside her brain, but not much, and life goes on very much like it did before, with an amazing and puzzling little girl who inspires awe and love and fear and insecurity and who reminds us, in the words of Ian Brown, that some things in the world of a broken child are real problems, and some things are mere complaints. Some of you have expressed how hard this all must be for Julie and I, and we appreciate that. But we live every day with Schuyler, and our lives are enriched immeasurably by her presence. So perhaps we feel sort of bad for the rest of you who are Schuylerless.
Incidentally, we got a bill today from the neuro, asking us to pay a part that wasn't covered by insurance or the deductible we paid, a whopping sixteen dollars. I think we can scrape that together. As a result, however, we saw how much WAS covered by insurance. Almost seven grand, folks. That a lot of coin just to see Nighttime Brain Pops. Why, that's enough to buy Schuyler her practice marimba for band next year, four times.
That's a lot of marimbas, friends.
Well, that's not entirely true. Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)
These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.
Anyway, the neurologist believes that what we've observed in the past sound very much like seizures, so we'll continue to watch for them and continue to wait and worry and all that. We know a little more about what's happening inside her brain, but not much, and life goes on very much like it did before, with an amazing and puzzling little girl who inspires awe and love and fear and insecurity and who reminds us, in the words of Ian Brown, that some things in the world of a broken child are real problems, and some things are mere complaints. Some of you have expressed how hard this all must be for Julie and I, and we appreciate that. But we live every day with Schuyler, and our lives are enriched immeasurably by her presence. So perhaps we feel sort of bad for the rest of you who are Schuylerless.
Incidentally, we got a bill today from the neuro, asking us to pay a part that wasn't covered by insurance or the deductible we paid, a whopping sixteen dollars. I think we can scrape that together. As a result, however, we saw how much WAS covered by insurance. Almost seven grand, folks. That a lot of coin just to see Nighttime Brain Pops. Why, that's enough to buy Schuyler her practice marimba for band next year, four times.
That's a lot of marimbas, friends.
May 5, 2011
Just a word.
The world is just bound and determined to make me take a stand on the "R Word", isn't it?
The short story of why this came up this week is this: An old friend from high school had a comment thread going on Facebook, about politics and Osama bin Laden and all that, and another person from high school took the opportunity to insult all of us Liberals with a term cleverly derived from the word "retard". When I called her on this, a few people voiced similar opinions of distaste for the word, at which point another old friend surprised me by suggesting that the use of the term was fine in a political context, particularly by someone who had served in the armed forces in the past. "SOMEBODY here wanted to make this whole thing about him and/or his family," she said about me, "and the rest of you joined in for the stoning by making this an issue about special needs kiddos."
Here's how I responded, in the moment:
I'm sorry, I like you, but you don't get to decide who is offended by a term like "retard". You don't get to decide if that awful word and the associations that accompany it are acceptable in a public discourse, about politics or anything else. You don't get to decide if the families who face that kind of crap EVERY FUCKING DAY need to get over ourselves. You don't get to decide that context makes it okay to use a word that gets thrown around in reference to kids who can't even defend themselves as an insult to anyone. You don't get to decide that my child and tens of thousands like her are acceptable as punchlines. If you don't understand why YOU don't get to make that decision, then I simply don't know what to say. It's not about politics or freedom of speech. It's about being a goddamn decent human being.
Now, the person who made the original comment wasn't someone I'd ever been friends with in high school. Frankly, she was an idiot* back then and she has apparently committed to that state of affairs for the long haul, bless her heart. But the other person was someone for whom I actually have a great deal of respect. It was a harsh reminder that even among the good at heart, there are blind spots where disability is concerned. Or at least the use of that one loaded, terrible and stupid word.
*(Edited to add: Yes, I know. "Idiot" is kind of the same thing, from like a hundred years ago. I would no doubt be considered quite the scandalous cur in 19th century parlors and sanitoriums.)
In the past, I haven't really wanted to make much of the whole "R Word" issue. I know it means a lot to others, and I totally understand, but I thought it would be possible to take a more nuanced position. I'm a special needs parent and advocate, yes, but I'm also a writer, and the idea of "banned" terminology doesn't sit easily with me. And honestly, it's a word that over the years, I have had to work to keep from coming out of my own mouth, and particularly in my past writing. I'll confess to that. I wasn't offended by Tropic Thunder; on the contrary, I felt like it was satirically taking issue with movie actors who cynically use disability roles to boost their careers. And I've always felt that when someone outside the disability community uses that word, much like when white people use the "N Word", the person ultimately damaged in the eyes of the world is the user more than anyone else. Try using the word "retard" in a job interview and see where it gets you. You'd might as well wear a swastika on your head.
I wrote about this once before when it came up in regards to my daughter. Back in the spring of 2009, the school diagnostician wanted to give Schuyler another IQ test, one that would, in her opinion, give her a new and more accurate number. That number would classify Schuyler as mentally retarded.
We chose not to allow that test, and I think I can say with absolute certainty that we never will. But the conversation put something on the table, something undeniable, and once placed on the table, it never really goes away.
"In a range consistent with mental retardation." Retardation. Retarded. The "R Word".
Retard.
I have a little exercise for those of you who aren't a part of the disability community. I want you to say that word. (I'm not going to call it the "R Word" any more. If you want to use this shitty word, let's own it.) I want you to say it out loud to yourself. "Retard." (If you're at work, you might want to wait until later.) See how it feels, just as an independent word without context.
Now I want you to scroll down and find a photo of Schuyler. Look at it and say it again. "Retard." Because whether or not we ever allow a therapist or a teacher to attach that label, it's one that is already being tossed her way, and has been since she was very young. So try it. Look at her and say "retard". How does the word taste in your mouth now?
Now I'd like you to google terms like "developmental disability" and "Down syndrome", and go look at some of those kids. Look into their eyes and say "retard".
In each of these scenarios, try to assign yourself a number. Imagine how many times you think any of these kids has heard the word "retard". Now line up all the people who ever said it to them and then put yourself at the back of that line. What do you want to say to the person ahead of you? What about the next person who gets in that line behind you? How long do you think that line would be for adults with developmental disabilities?
Now, just for kicks, pull out a photo of YOUR kid, or your nephew or your brother or sister. Doesn't even have to be a kid, just someone that you love fiercely and would defend with everything you are. Look into their eyes and say it. "Retard." Imagine it's not you saying it, but someone else, some other person. Maybe a stranger, maybe someone you know and even like and trust.
Now imagine that other person trying to tell you that you're being overly sensitive, you're being "PC", that they have a right to use that word however they want, that it's okay in a certain context such as politics. Imagine they're calling you or someone else a retard, but instead of hearing that as a random insult, you associate it with someone you love, and that association is, by design, intended to be devastating and intentionally using your loved one as a benchmark for extreme stupidity.
Now, repeat this exercise until you want to break something, until you want to burn down the whole world.
That's how it feels to us when you use the word "retard".
Do I sound like a one-issue guy? I know that I do. I hate that I've become that person, and I hope I won't be forever, but yeah, maybe I have. I was once a fairly active political creature. In college, I once stood outside the death house in Huntsville protesting an execution. I even worked on the Paul Simon campaign, and how many people even remember who that was? I also used to bring the funny, or at least I thought so. And I used to write a great deal about music, which is what I thought the focus of my life would always be.
But this is it. This is who I am now. Every day, I feel the rest of it being put away, being filtered out, and what is left is a father with a broken little girl. And I get that wrong, a lot, but when I get it right, I am momentarily the person I am supposed to be.
There are people in this world, and I'm actually thinking of the parties involved in this particular incident, who have single issues dominating their lives as well. Some of them have served their country in the armed forces; others have children who are doing the same, and for them politics is very personal. Their passions come from those single dominating issues, and I get that.
But that passion, or that service for that matter, it doesn't give you license to use kids like Schuyler as insults or punchlines. You have a right to call me stupid because of my beliefs, absolutely. But you don't have license to say that I am so stupid that I am on the level of a child with a developmental disability, MY child, OUR children, as if that is the worst thing I could ever fear to be. You don't get to portray yourself as a child of God while you throw the most defenseless of us under the bus to score some point in a ridiculous Facebook comment thread.
Not without me calling you on it. Not without me at least giving you the option of looking into your own heart and deciding if you like what you see.
In the past, I haven't really wanted to make much of the whole "R Word" issue. I know it means a lot to others, and I totally understand, but I thought it would be possible to take a more nuanced position. I'm a special needs parent and advocate, yes, but I'm also a writer, and the idea of "banned" terminology doesn't sit easily with me. And honestly, it's a word that over the years, I have had to work to keep from coming out of my own mouth, and particularly in my past writing. I'll confess to that. I wasn't offended by Tropic Thunder; on the contrary, I felt like it was satirically taking issue with movie actors who cynically use disability roles to boost their careers. And I've always felt that when someone outside the disability community uses that word, much like when white people use the "N Word", the person ultimately damaged in the eyes of the world is the user more than anyone else. Try using the word "retard" in a job interview and see where it gets you. You'd might as well wear a swastika on your head.
I wrote about this once before when it came up in regards to my daughter. Back in the spring of 2009, the school diagnostician wanted to give Schuyler another IQ test, one that would, in her opinion, give her a new and more accurate number. That number would classify Schuyler as mentally retarded.
We chose not to allow that test, and I think I can say with absolute certainty that we never will. But the conversation put something on the table, something undeniable, and once placed on the table, it never really goes away.
"In a range consistent with mental retardation." Retardation. Retarded. The "R Word".
Retard.
I have a little exercise for those of you who aren't a part of the disability community. I want you to say that word. (I'm not going to call it the "R Word" any more. If you want to use this shitty word, let's own it.) I want you to say it out loud to yourself. "Retard." (If you're at work, you might want to wait until later.) See how it feels, just as an independent word without context.
Now I want you to scroll down and find a photo of Schuyler. Look at it and say it again. "Retard." Because whether or not we ever allow a therapist or a teacher to attach that label, it's one that is already being tossed her way, and has been since she was very young. So try it. Look at her and say "retard". How does the word taste in your mouth now?
Now I'd like you to google terms like "developmental disability" and "Down syndrome", and go look at some of those kids. Look into their eyes and say "retard".
In each of these scenarios, try to assign yourself a number. Imagine how many times you think any of these kids has heard the word "retard". Now line up all the people who ever said it to them and then put yourself at the back of that line. What do you want to say to the person ahead of you? What about the next person who gets in that line behind you? How long do you think that line would be for adults with developmental disabilities?
Now, just for kicks, pull out a photo of YOUR kid, or your nephew or your brother or sister. Doesn't even have to be a kid, just someone that you love fiercely and would defend with everything you are. Look into their eyes and say it. "Retard." Imagine it's not you saying it, but someone else, some other person. Maybe a stranger, maybe someone you know and even like and trust.
Now imagine that other person trying to tell you that you're being overly sensitive, you're being "PC", that they have a right to use that word however they want, that it's okay in a certain context such as politics. Imagine they're calling you or someone else a retard, but instead of hearing that as a random insult, you associate it with someone you love, and that association is, by design, intended to be devastating and intentionally using your loved one as a benchmark for extreme stupidity.
Now, repeat this exercise until you want to break something, until you want to burn down the whole world.
That's how it feels to us when you use the word "retard".
Do I sound like a one-issue guy? I know that I do. I hate that I've become that person, and I hope I won't be forever, but yeah, maybe I have. I was once a fairly active political creature. In college, I once stood outside the death house in Huntsville protesting an execution. I even worked on the Paul Simon campaign, and how many people even remember who that was? I also used to bring the funny, or at least I thought so. And I used to write a great deal about music, which is what I thought the focus of my life would always be.
But this is it. This is who I am now. Every day, I feel the rest of it being put away, being filtered out, and what is left is a father with a broken little girl. And I get that wrong, a lot, but when I get it right, I am momentarily the person I am supposed to be.
There are people in this world, and I'm actually thinking of the parties involved in this particular incident, who have single issues dominating their lives as well. Some of them have served their country in the armed forces; others have children who are doing the same, and for them politics is very personal. Their passions come from those single dominating issues, and I get that.
But that passion, or that service for that matter, it doesn't give you license to use kids like Schuyler as insults or punchlines. You have a right to call me stupid because of my beliefs, absolutely. But you don't have license to say that I am so stupid that I am on the level of a child with a developmental disability, MY child, OUR children, as if that is the worst thing I could ever fear to be. You don't get to portray yourself as a child of God while you throw the most defenseless of us under the bus to score some point in a ridiculous Facebook comment thread.
Not without me calling you on it. Not without me at least giving you the option of looking into your own heart and deciding if you like what you see.
May 2, 2011
Monster trap
There's a lot to say about Schuyler's ambulatory EEG, I suppose, but perhaps the most important, at least at this early stage before we get any actual data from the process, is simply this: The glue came out of her hair without any of the trauma and irritation that we experienced last time.
Maybe it was new glue, or the fact that the tech appeared to have used less of it, or it may very well have been due to the good advice of the removal tech this time. (Apparently the key is to apply a liberal slathering of conditioner to dry hair and leave it on for a while. Half an hour worked well. Last time, we were advised to just comb out the hardened glue. Seriously.) Whatever the reason, the glue mostly washed right out, and the residual bits were easily removed thanks to the tiny little hair rake we had left over from a recent head lice false alarm. There are some ugly little abrasions on her forehead from the sensors, but those should go away quickly. I tip my metaphorical glue-covered wire hat to the neurology team, and to the industry that has clearly done some work in this area in the past two years.
As for the results of the test, it's obviously too early to know anything. The procedure wasn't much different this time, but there were some key additions that changed the overall feel of it. We didn't have to take Schuyler to the neuro office, for one thing; they came to our place and wired her up here. The primary reason for that home visit was to install a pair of stationary cameras, one pointing at her bed and the other parked in front of the couch, ready to capture any seizures that might occur. It was a strange experience, having a camera pointed at us 24/7 like some sort of very very very boring reality tv show.
Schuyler was more aware of her appearance this time around. When we went to Target to find a head scarf or a hat (or, as it turned out, both), she cowered behind me sadly, trying to keep from being seen. Schuyler's disability has always been an invisible one; her sudden experience with visual difference made me realize all over again that in some ways, she is a very fortunate broken little girl.
On Friday evening, Schuyler had an awful choking experience, maybe the worst ever. It wasn't with any forbidden food, either. I was sitting beside her but didn't notice immediately, so I have no idea if it was preceded by a seizure. I do know that the camera captured me at my very least impressive, freaking out over the whole thing, but I assume it also captured me reaching into the back of Schuyler's throat and dislodging the piece of food that was choking her, so perhaps I won't make the asshole reel after all.
Aside from that, I am oddly saddened to report that Schuyler's brain was, to our knowledge, happy and healthy all weekend. We watched lots of flashy tv and stayed up crazy late, but the monster didn't seem to take the bait. I'm hoping that perhaps we just missed a seizure, which is, again, a strange thing for a parent to say.
That's the thing about this process. The one thing we want to hear -- "Your kid is not having seizures." -- is the one answer we can't get. We might possibly hear that she had one; we will most likely be told that she didn't have one during the 72-hour window of the EEG. And we'll go on wondering, and waiting to see if something with bigger claws and sharper fangs decides to show its face.
And through it all, Schuyler will continue to do what she does. She'll wear funky clothes and play Mariokarts and listen to Lady Gaga. She'll go to middle school next year and become a drummer girl (Jesus Howard Christ, remind me to tell you about the practice marimba we need to get for her), she'll make friends there, she'll make frenemies and she'll sink or she'll swim. She'll grow taller if possible, and prettier if possible, and she'll attract more looks, not just from rude adults wondering what's wrong with her but also from those boys who might simply see a girl.
Once unaware of the monster along for the ride in her head, and now just unconcerned, Schuyler will persevere, because that's who she is. I don't even know if it's ever occurred to her to give up.
The comfort of cold comfort
"Tonight, I can report to the American people and to the world, the United States has conducted an operation that killed Osama bin Laden, the leader of al Qaeda, and a terrorist who's responsible for the murder of thousands of innocent men, women, and children."
I watched the president say the words that I honestly never thought I'd hear. Not like that, anyway. I always figured we'd find bin Laden the same way we found Joseph Mengele. Sometime in the future, we'd get a tip that bin Laden died peacefully in his sleep some years before, and we'd find an old grave and analyze the bones, and that would be that. A footnote to history, and nothing more.
Instead, it went down exactly like most Americans hoped it would. And while I don't have much to add to the volumes of opinion making their way to the Internet today, I thought I should at least mark the moment, fraught as it might be with complicated emotions.
I sat in front of my television and watched the celebrations that began last night, the chanting of "USA! USA! USA!", as if we'd just won Olympic gold instead of killing another human being, albeit an undeniably evil one. In my head, I knew that this was wrong, it was barbaric and not much better than the crowds in faraway places who cheered and danced in dusty village streets to celebrate the carnage of September 11th.
But in my heart, I felt the same way as those who were celebrating. I felt that same visceral, tribal satisfaction. And now, even in the cool consideration of the next day, I find that, try as I might, I can't truly fault the cheering Americans for whom bin Laden's death serves as a proxy for all the things that should have come out of our long, sad national response to 9/11, all the simple plans that turned out to be incredibly and unpatriotically complicated, all the battles that should have been won but instead just led to more war, and all the sacrifices to the cause of "national security" that instead of making them safer, just made them less free.
Killing bin Laden doesn't change any of that. But it feels like it should, and for now, that'll have to do.
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