Showing posts with label the monster. Show all posts
Showing posts with label the monster. Show all posts

May 6, 2018

The Care and Feeding of Monsters

I recently had the surreal but entirely positive experience of revisiting my book on the occasion of its release, ten years after publication, in audiobook form. I began listening as a kind of quality check, bracing myself for the voice actor to introduce “Shooler’s Monster”. (He didn’t; he was actually a fantastic actor, and I couldn’t be more pleased that he was the one who got to spend nine hours in a recording booth instead of me. We were all spared my stuttering, monotone twang. You’re welcome.) I began listening to the first chapter, and then, like a drunk who blacks out and then wakes up the next day pantsless in the park, suddenly I found I’d listened to the whole thing.

I stayed for the entire book, not because it is such a brilliant work of wordsmithery, but rather because I hadn’t actually read the whole thing from beginning to end in, well, probably ten years. Once I stepped into the prologue, back in New Haven with baby Schuyler and that beautiful, horrible afternoon in a late New England summer, all my half-forgotten anxieties and heartbreaks and WTF moments became real to me all over again.

I found myself back in the summer of 2003, when my baby girl was an internally focused and entirely wordless enigma, and the future consisted of a rolling mist, opaque but presumedly fully of hungry, hateful monsters. Schuyler was imperiled by that future, and I was too dumb and too scared to do anyway thing more than step into it with her. 2003 was the summer of “Well, shit, here goes nothing.”

Monsters. Their nature has changed over the years, although they are as omnipresent as ever. I have a small confession to make about the title of my book. Some people hated it, and others found it to be an elegant metaphor, but either way, it wasn’t my brilliant idea, not directly. I’d been referring to “Schuyler’s monster” on my blog for some time before the book was written, but the term itself originally came from Schuyler.

I’ve said many times that the only two things I know for sure I’ll always give Schuyler are love and the truth, and that was true from the very beginning. After her diagnosis, she knew something was wrong, she understood that something big had changed. When I tried to explain it to her on a level that would make some sense to her (as if it made any to me, then or now), her eyes lit up, and she asked a question, with her combination of primitive sign language, even more primitive verbal language, and her omnipresent miming as if her life was an unending game of charades,

Was it a tiny little monster living in her head?

And I thought, You know what? It kind of is. Let’s go with that.

At the time immediately after Schuyler’s diagnosis, in my state of numbed panic and heartbreak, the idea of what a little monster inside her beautiful but inscrutable brain might be doing to her was simple. It was hurting her. It was trampling her future and making its plans to whip up lightning storms inside her sweet little head. It might have even been preparing to extinguish her life altogether. No one knew, and because I’m her father and thus needed to be prepared, I believed the worst case scenarios and stood by, ready to do what I could to protect her from that monster and those storms. I was aware then as I am now, of course, that what I could do to save her was not a goddamn thing.

It’s been almost fifteen years since that awful summer, the one that broke me but not Schuyler. The life she lives now is not the one we were warned to prepare ourselves for. Her brain was badly malformed, maybe as much as three quarters of it affected by her polymicrogyria, but it nevertheless reformed its lines and rewired its functions and is doing its brainly job with style and ingenuity. She had feeding difficulties, but aside from maybe half a dozen terrifying choking incidents, she’s navigated the world of food with gusto, and most of those feeding issues have completely faded. She has intellectual disabilities, but she’s not a fool. She experiences and processes the world around her in her own way, but that way isn't childish or insufficient.

It’s weird and wonderful and cool, Schuyler’s brain world. And she’s right. It has a monster in it.

This monster isn't the one I feared when she was so much younger. It’s not a monster that Schuyler hates, I don’t think, not really. Her polymicrogyria, and the unique life it gives her, is hard, and it lacks navigation or instructions. But after all these years of keeping on keeping on, of finding what works and what she wants to do with the complicated and compromised life she’s been given, Schuyler lives that life always aware of her challenges but not fixated on them. At the impossible age of eighteen, she’s doing her very best, and her very best isn’t bad at all. As a matter of fact, Schuyler’s best is pretty extraordinary.

And there’s a monster there still. She seems less and less motivated to hide it than she was even a year ago, which I believe is a very positive development. She seems less interested in trying to pass for neurotypical than she was even a year ago. Perhaps she’s experienced the world of the neurotypical for long enough to know that we’re not so perfect, or more to the point so undamaged, as she might have once believed. The reality of the world has made a strong case for alternative possibilities she might not have entertained before now.

The typical world is kind of fucked up, in other words. Her atypical life might not be all that lacking after all.

If you’re not a part of the disability community, and by that I mean if you don’t have a disability yourself, or have immediate family members or professional clients with a disability, you might imagine our lives as being an ongoing season of The Disability Show all the time. And I guess on some level that’s true, in that it never goes away. There’s always a monster-shaped chair in every room, and it’s never unoccupied.

Our reality is more subtle than that, however. We don’t talk about it every day, or even most days. The older Schuyler gets, the less she worries about it. And for all that I write about Schuyler’s polymicrogyria and trying to make sense of it, I don’t think of Schuyler as the disabled kid all the time. I’m not always Disability Dad. Sometimes I’m Amateur Musician Dad now, for example; I’ve begun to learn a new instrument (the ophicleide, which is perhaps the ultimate hipster instrument, in that you’ve probably never heard of it). Schuyler helped me get it, starting a little fundraiser last fall, and now she watches me play and asks lots of questions and may in fact be the only human being in both my near and remote orbits who isn’t sick to fucking death of hearing about the goddamn ophicleide. We’re all living our lives as people, and Schuyler’s disability is a significant part of that, but it doesn’t suck up all the oxygen in the room the way it once did.

It’s not that I live in denial. But the fact is, when you know Schuyler, she’s just Schuyler, polymicrogyria and weird ways and rockstar presence and big laugh and all. When you get to know her, she becomes more.

That’s important. The world in general sees someone like Schuyler as less. It sees people like her as diminished members of society, because it doesn’t see them in their totality. People with disabilities are treated like partial people by our society because our society doesn’t know them. Much of our society doesn’t even realize they are knowable. And until those relationships become real, until students in school and adults in their workplaces and tv viewers turning on their favorite shows begin to see people like Schuyler existing and working and laughing and cursing and living messy lives right next to them, there will always be a divide. There will always be an Other. And as a society, we are absolutely shit when it comes to embracing the Other.

Schuyler’s life now is a mix of the typical and the monstered. She attended her school’s Homecoming dance last fall, with a shy young man who asked her to the dance and made her world suddenly bright with possibilities. She went to prom last week with another exceptional young man, this time one whom she invited, perhaps because she’s beginning to understand that if she wants to have the world on her terms, she’s got to spell those terms out herself. This summer we’re speaking to a gathering of polymicrogria families and then traveling to Australia so she can attend a leadership workshop for adults who use assistive speech technology. And at the end of the summer, she’ll enter into an internship at a major local hospital, where she’ll spend about nine months learning valuable job skills in a variety of different positions.

After that, Schuyler will enter the adult world in earnest. She’ll step into the foggiest of fogs, and she’ll lose the protections that school and childhood have cloaked her in. Will the world be ready for her? Is it ready for any of her peers? I sometimes wonder. The speeches I’ve been giving over the past few years have contained a lot of calls to arms where disability rights and societal change and authentic relationships with people like Schuyler are concerned, but I sometimes fear that while the faces in the audience may change, they’re still mostly members of the choir that I’m preaching to.

I want to change the world, and I fear that I can’t. It’s dawning on me now that I’m not going to be the one to do it.

It’ll be Schuyler, and people like her. And they’ll do it because it needs to be done. The rest of us need to help them build a world in which they have the opportunities the rest of us enjoy in our extreme privilege. And when we step back and watch what they do with those opportunities, all I know for certain is that our only appropriate reactions will be ones of respect, and maybe even just a touch of awe.


April 27, 2017

Safe Spaces

This week at Support for Special Needs:
Excerpt: 
Safe spaces seem antithetical in some ways to the idea of eventual independence, but the truth is, we all need our supports. It’s different for kids like Schuyler as they grow out of childhood, of course. Her independent life is probably always going to come with an asterisk, and the thing I’ve been working on lately, with a good deal of success, is being okay with that. Schuyler requires safe spaces, but they’re not fake places, nor are they segregated or isolated. And within those tended gardens, I think astonishing things are going to grow.

April 6, 2017

Monster Island

Today at Support for Special Needs:
Excerpt: 
I’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusiastically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach and looked hard for sea creatures on the sand. But in the end, it was a very familiar monster that found her.

December 21, 2016

To my Heart, at Seventeen

Today at Support for Special Needs:
Excerpt: 
You know the truth, which is something we've always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You've simply refused to accept those limitations as concrete. You've shamed those of us who've tried at various times to define the limits of the person who you can become. For that above everything else, I'm proud of you, heartburstingly so.

December 1, 2016

The evolution of the dad hat

Today at Support for Special Needs:
Excerpt: 
The world of a teenaged girl with a disability is complex, in ways that aren't cute or sitcom-ready. We've discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It's terrifying as a father; it's more terrifying for a young woman with a disability, and Schuyler is old enough to understand what's going on now, and what's at stake. Ten years ago, she was worried about werewolves. That's not what's waiting for her now, though.

October 18, 2016

Two Brains

Today at Support for Special Needs:
Excerpt: 
I love Schuyler's brain, which might seem like an odd thing to say, given her own uneasy relationship with it. Schuyler's brain isn't like yours or mine, or anyone else's. It's broken, dramatically so, but that's not even close to the main point. The story of Schuyler's brain isn't that it's broken, but rather the extraordinary things she's accomplished with it regardless. Schuyler walks and dances and sings, and she laughs three distinct different laughs, including the one that I love most, the one I call her troublemaker laugh. Schuyler plays percussion in band; every autumn Friday night I watch as she plays the suspended cymbals, and I see her play at exactly the right moments, contributing the rising metal shimmer as the musical phrases of Carl Orff's epic Carmina Burana (music that originated inside his gooshy German brain, too) crest and ebb. Schuyler operates an iPad; her brain translates her thoughts into words on a screen, or in a text message with a dizzying array of digital stickers attached, because she's moved so, so far beyond emojis. Schuyler's brain drives her creativity, and it makes her go a little crazy for the boys, and sometimes the girls, at her school. Her brain gets sad, it becomes paranoid, and it makes extraordinarily poor choices from time to time. But it also contains all the love she has, a love that is big and fat and boundless and childlike and complicated all at once. I describe Schuyler as having the biggest heart in the world, but of course it's her weird but wonderful, inexplicably broken but beautiful brain where that love resides, right there next to her confounding little monster.

September 28, 2016

Limits

Today at Support for Special Needs:
Excerpt:  
I've written many times about my duty as Schuyler's parent to be an overbeliever for her. I still think that's true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler's capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in her life. It's tempting to say that it's a good thing we didn't accept those limits at the time, but honestly, it wasn't even a choice. When your parental instincts call bullshit on expert opinions, you go with your gut. If you're right, boo-yah. If not, you regroup and you go on.

September 14, 2016

Toll

Today at Support for Special Needs:
Excerpt: 
Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid's childhood provides until it very much doesn't. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But it takes its toll.

August 30, 2016

The invisible monsters who walk among us

Today at Support for Special Needs:
Excerpt:  
Everyone cry out, because such a statement demands outcry. Ann Coulter stands proudly and feeds off of us, a vampire hungry for hate and sorrow and lights and cameras. But we stand up and we push back, because "standard retard" doesn't get to flutter out into the air without being swatted at. It doesn't do any good to protest, but it feels evil not to, so we speak up and then we turn back to our lives, our difficult but rewarding lives. Ann Coulter may be rich and she may be famous, but not one of us in the disability community would trade places with her, not for a moment.

July 19, 2016

Acceptance, with an asterisk

Today at Support for Special Needs:
Excerpt: 
When I was younger and more earnest, I wanted the fixes. I'm older and spiritually winded now, and I'm faced with the strong will of a daughter who's stretching her wings and exploring her own choices. When we talked about the idea of acceptance, and of looking for peace rather than solutions, Schuyler understood that. She's still not done trying to reshuffle the deck, though. And as hard to read as the future is right now, I don't expect that to change even a little.

July 12, 2016

The Watcher

This morning at Support for Special Needs:
Excerpt:  
There's a lot more for Schuyler to unpack about this, some of it making zero sense at all. I'm not sure Schuyler entirely comprehends racism, except of course she understands being hated and abused or even just dismissed for being different, so I suspect racism's one she probably gets. It's hard to explain to her when she's probably safe and when she's not, because I don't know myself. Schuyler's white, she's a woman, and she has a disability. She'll probably be just fine in a way that is horribly unfair, until the day comes when she's very much NOT fine, also in a way that is horribly unfair. She has both privilege and disadvantage, neither of which is easy to explain to her.

June 14, 2016

Explaining the devil to angels

Today at Support for Special Needs:
Excerpt:  
Schuyler's view of the world is a little fantastical and a little simple. It has room for monsters, but not like these. It has room for sadness and fear, but not like this. And her intellectual disability would make it easy to punt this a bit, to file down the sharp points and distract her until the world goes back to talking about the stupid election and who Taylor Swift is dating. But I refuse to do it.

May 10, 2016

With Thoughts of Other, Younger Days

Today, at Support for Special Needs:
 Excerpt: 
I'm not sure what to think of who I am now. I'd like to look back at that younger me and say, "Oh my god, what a dumbass. He knew nothing." But I miss him. I miss being him. He felt fear of the future, but the ticking clock didn't sound so loudly in his ear. He didn't have answers, but he had time, and there was no way he wasn't going to be a warrior from that point on. He'd written (or was in the process of writing) a book about being a confused father stumbling through some mysterious darkened places, but that was over. Schuyler's monster had been sighted and put on notice.

April 29, 2016

The Very, Very Worst

This is Schuyler.

Schuyler is sixteen years old. She plays percussion in her high school band. Schuyler participates in Miracle League soccer and volunteers with Miracle League kids who play baseball, helping out with their practices and their games while wearing a Wonder Woman cap. She takes an art class and writes stories about dragons and monster armies and evil queens. She's a huge Star Wars fan and loves Rey the most, although she's got a soft spot in her heart for Sabine and Ahsoka, too. She vacillates between carefree atheism and curious agnosticism. Schuyler's ambition in life is to help others, particularly people with disabilities, those who have "little monsters like my own", as she puts it. The little monster of her own that she's referring to is the brain malformation called Polymicrogyria, which is the root of most of her struggles and will be for her entire life.

And at this stage of her life, the thing Schuyler wants more than anything in the world is close relationships. With friends, yes, but also more. Schuyler wants to date. She wants to find someone to share her life with, at least the life she's in right now. She can't tell you what that looks like, not even for sure if it's a boy or a girl she's searching for. She only knows that she wants to explore love, and one day soon, as much as it makes me twitchy to say it, she'll want to explore physical relationships as well. Finding that in her life, breaking her loneliness and leaving her too-long lingering childhood behind, these are of paramount importance to her, in ways that can be heartbreaking to watch.

So here's my question to you, reader. Do you think that idea is gross? Do you find it ridiculous to even imagine? Do you find the idea of Schuyler and young people like her with intellectual disabilities having physical and romantic relationships to be something that just cries out to be a punchline, not just of a joke but of a whole comedy routine?

Comedian Gary Owen does.

Apparently BET and Showtime do, too, since they've invested in giving his act, including his disability-related material, a home in their television lineup.

I'm not going to embed his routine in this post; the thought of his face anywhere near my daughter's makes me want to set things on fire. But I will link to the excerpt on YouTube. I encourage you to go watch it, because I want you to understand how much is at stake here, and exactly how bad it can be for people with intellectual disabilities in our popular culture. But if you choose not to go watch it, I'll understand that, too. I watched it halfway through once and then finally got the stomach to see the whole thing earlier today. That's enough for me; I'll never watch it again. It really is the very, very worst.

If you're not inclined to see it for yourself, I'll give you the salient points.

1) Gary Owen tells a story about his cousin, who is, as he says, "retarded". If you miss him sharing this with you, don't worry. He repeats this information, and that word, many times throughout his comedy bit.

2) The story involves what he believes is the unbelievable revelation that his cousin is sexually active. Even more shocking to Mr. Owen is the fact that her partner also has an intellectual disability. This conceit forms the core of his comedy routine. Two people with intellectual disabilities have a sexual relationship. Isn't that disgusting? Isn't it hilarious?

3) To illustrate this point, he impersonates what he imagines his cousin and her partner's behavior might have been like. Not just the courting, but the actual act of sex.

4) If you're imagining this to be the most awful thing you're likely to see someone perform in mainstream pop culture, I'm going to warn you. It's probably even worse than you're imagining.

5) All of this is okay, Mr. Owen assures us, because it's his cousin. That familial relationship gives him license to make her the butt of his comedy routine, to insist that her sex life must be an awkward joke, and to impersonate both her and her partner in the act. Also, and this is very important, he claims to have volunteered for Special Olympics for ten years on her behalf. (He notes his sacrifice in this regard, since, you know, Special Olympians run funny. He had to endure that, you see.) So, you know, he's one of us. He has license.

When he began to get some negative reaction to his material, shockingly so since he sees himself as such a beloved member of the disability family, he responded by posting a link to an interview with comedian Louis CK, in which Louis says, "Saying that something is too terrible to joke about, that's like saying a disease is too terrible to try to cure. That's what you do with awful things, you joke about them. That's how you get through it."

What Gary Owen doesn't appear to understand is this: It's not his thing to get through. He doesn't have an intellectual disability. No one is suggesting that his life and his own sexuality is a disgusting idea worthy of about five minutes of cruel, grotesque jokes and impersonations. Joking about it doesn't help him deal with the pain because there is no pain for him. Only a target. The fact that he may or may not have worked with Special Olympics doesn't make it any better. It makes it exponentially worse. When he suggests, through the Louis CK quote, that intellectual disability is an "awful thing", he should know that in this case, the "awful thing" about their disability is in fact Gary Owen.

I don't know Gary Owen's comedy; like many who are becoming familiar with his body of work because of this particular comedy bit, I knew nothing about him until now. (Nothing like a first impression.) I can't say whether he's funny or smart, except on the evidence of this one routine, which would strongly suggest that he is neither.

But Gary Owen has figured something out that is fairly insightful, and he's using it to earn some cheap but loud laughs. Gary Owen knows that our society doesn't see people with intellectual disabilities as whole human beings, and subsequently many people find the idea of these people having sexual lives to be uncomfortable. Schuyler and her friends can be cute, and they can be inspiring, even. As long as they remain forever children, forever without adult agency, they are allowed a place in our society.

Beyond that, however, people with intellectual disabilities run into trouble. Having awareness of their own adult emotions and bodies, and enjoying the agency to engage in relationships and live sexually active lives, these are the things that human beings do. It's not something that children engage in, and to so many in our society, people with intellectual disabilities are forever children.

In his heart of hearts, I think Gary Owen understands that the targets of his grotesque humor deserve better. He makes excuses and tries to cover his own culpability with his past volunteerism. He knows that what he's doing is terribly, horribly wrong. But the tragedy and the danger of the matter is simply this: Gary Owen may know better, but judging from the howls of laughter in that video clip, his audience doesn't.

In the past, I've written about the use of the word "retarded" in pop culture, but this time, I wish that's all that was going in. If Gary Owen stood up and simply said, "Retards, what are you gonna do, am I right?", I don't think I would do much more than link on Facebook and say, "Hey, look at this asshole." Watching Owen's wretched comedy routine makes me ill, and it makes me angry. It hits so much deeper than other comedians have in the past because he's not just being cruel. He's not just making fun of young adults like Schuyler, calling them less.

Gary Owen is attacking the very idea that someone with an intellectual disability deserves to be a human being at all.

I'm not sure what I should do, and I'm certainly not sure what I think you should do, either. There's a change.org petition to get Showtime to remove this particular segment from his comedy special, which is a start, I guess. I don't think they'll do it; I'm not even sure they can, legally. Remarks he's making on his Facebook page suggest that Gary Owen has zero intention of trying to make any of this better, and his fans seem to be fiercely loyal. I'm not sure there's much to be done in winning hearts and minds.

But I do know this. I need to do something. I need to know that lots of people feel that same impulse. I need to make some noise. I need to shake some trees and kick some walls. I need to howl at the sky and grab people by the shoulders and tell them about this. I need to expend energy in trying to fix this unfixable problem, because my daughter deserves a full, rich, human life experience. She does, her friends do, and the adults they will all become deserve to have their humanity recognized.

Words matter. Media acceptance of what is, in this case, undeniably hate speech, this matters. It matters that executives at BET and Showtime watched that comedy bit and said, "Yeah, that's great stuff. Let's put our brand on that and sell it to our subscribers." It matters a very great deal that many, many people are okay with that choice.

Schuyler and people like her live complicated and difficult lives. People like Gary Owen make those lives much more complicated and much more difficult. If I could say one thing to Mr. Owen and to the people in that audience laughing so hard and to his online fans defending him, it would be this:

Please stop. Please, just fucking stop.




EDITED TO ADD: When I tried to explain the comedy routine to Schuyler (without actually showing it to her, because I'm not a monster), she was obviously pretty pissed off. She asked if she could make a video in response. I said yes. Well, of course I did.

April 12, 2016

A world diminished by what it cannot see

Today at Support for Special Needs:
Excerpt: 
The value of human life isn't defined by the perfection of the human form or how advanced the intellect and its accompanying understanding of a complex world. That's a powerful realization. In a society that places such a high but narrow value on measuring our worth by our productivity, embracing the inherent human value of even the most impaired person is a revelatory act of social defiance, and perhaps a genuine spiritual awakening.

April 4, 2016

The Inevitable Sorrow of Passing

Today at Support for Special Needs:
Excerpt: 
On a good day, especially when she doesn't have to speak too much, Schuyler passes pretty successfully. There are a few outward signs of her polymicrogyria, but she masks them pretty skillfully. She carries an iPad with her at all times, of course, but these days, that doesn't exactly distinguish her from any other teenager. (Insert curmudgeonly, "get the hell off my lawn" statement here.) Like a lot of kids with intellectual disabilities, she worries about people noticing her difference and judging her for them. For Schuyler, passing is a very deliberate choice. I try to encourage her to embrace her uniqueness, but while I hope passing won't always be her position, for now, as long as it's what she wants, I'll help her any way I can, even as I know where all this leads. This is going to be a tough lesson for her to learn, but it's going to be one she learns herself. It has to be.


March 21, 2016

A Hard, Correct Answer

Today at Support for Special Needs:
Excerpt: 
When we talk about accessibility and inclusion, those aren't just buzzwords. And they're not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren't any easy answers. Transportation may be the most straightforward, but it's also pretty daunting. It's easy to forget about the simple act of getting from here to there when we're putting together the list of Things To Keep Us Up Late.

February 8, 2016

Anything You Want to Be

Today at Support for Special Needs:
Excerpt: 
As I've written before, I'm a big proponent of overbelieving. I've never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that "you can do whatever you want in life, be anything you want to be, as long as you're willing to work for it" is a gentle lie told to very young children. It's one that we as parents understand will be shaped and molded as our kids get older. When you're five, it's entirely feasible that you could be a cowgirl or an astronaut one day. When you're a teenager, that conversation become a lot more real world.

January 25, 2016

The Price of Happiness

Today at Support for Special Needs:
Excerpt: 
I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.

January 18, 2016

The Three Anxieties and the Lucky Brain

Today at Support for Special Needs:
Excerpt: 
Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.