May 26, 2014

Insufficient Instrument

Today at Support for Special Needs:
For a guy who's not too smart, I think I do a reasonably good job of navigating the chaos around me. And yet, it is in respect to the most important part of my world where I think I know the least. Schuyler has always been, and remains today, the central mystery of my life. I think I made peace with that years ago, mostly because it is in the journey to understand her mystery that I've grown the most as a person, and found my closest approximation to lasting happiness. I've accepted that as lucky as I am to have Schuyler in my life, I'm mostly not going to get her.
It's beginning to occur to me that I'm not the only one.

May 25, 2014

American Poison

You're probably reading this on Sunday or Monday ("Happy" Memorial Day seems like a weird thing to say), but I'm writing this on Saturday night, in the middle of the media coverage of another horrific mass killing in America. It's at that stage where we're just now getting enough information to begin to understand what happened, and the justified outrage is building up steam, but there's still a lot we don't know. Worse revelations are no doubt still to come. Even at this early stage, though, it feels like a quintessentially American story.

I'm not going to get into the specifics of what happened. I'm not going to name the killer because, well, fuck that guy. He doesn't deserve his new-found, posthumous fame. I'm not going to name the town where it happened, either, because that community doesn't deserve the notoriety that will no doubt follow the event for years to come. If you're reading this the day or the week it was posted, you know it all anyway. If you're reading it months or years from now, I suspect some other terrible but interchangeable thing will have replaced it in the news. If you miss one mass murder in this country, you'll never have to wait long for another. My own feelings about the event are pretty straightforward. As a pacifist, I'm horrified. As a man, I'm ashamed. But as a father, and the father of a daughter, I'm particularly moved, and troubled.

Once again, the media is reporting that the accused shooter is mentally ill, a "madman", according to the first reports from local law enforcement. He's also been identified by the family attorney as having been diagnosed on the autism spectrum, specifically Aspergers syndrome.

For some, it's easy, even comforting, to blame something like this on mental illness or a neurological disability. "That's awful," one might think. "It's a good thing my own kids aren't mentally ill or intellectually disabled."

Separation gives us a sense of safety. "Terrible acts are committed by monsters," we tell ourselves, "and I don't know any monsters." We've been taught our whole lives on some level, perhaps not always directly but with the subtle stain of common vocabulary and social narrative, to fear the mentally ill or neurologically disabled.

Those of us who live in a world of mental illnesses or neurological imperfections understand a deeper truth. People with mental illnesses aren't prone to kill, and persons with disabilities are far more likely to be victims of violence and sexual assault than they are to be perpetrators. And as we're not defined by our afflictions, neither are those who share them but who commit atrocious acts. Mental illness, emotional difficulties, neurological differences, these are part of the tapestry of who we are. Sometimes they are woven in the tapestry of very bad people, too.

"That guy was fucking crazy" feels comfortable, but in this case, as in so many cases, there's a deep and disturbing well of misogyny from which the shooter drew his anger. And like it or not, we need to face the fact that his philosophy, while twisted, did not appear in a void. Even tonight, just a day after the shooting, there's an ugly subculture out there expressing understanding for his rage. This feels significant to me; I don't remember the Newtown massacre bringing out messages of support from people who just don't like kids. But then, hating children isn't acceptable in this country. Hating women is.

The shooter blamed women for the tragedy that he unleashed, and of course this is entirely false. The knee-jerk response of so many is to blame mental illness or a neurological disability for his horrific actions, and this is also wrong, simply a grotesque oversimplification. The responsibility for the murderer's actions fall squarely on him, but with an asterisk. We live in a culture where poison flows in rivers just under the surface. "Fear the fool and the madman. And she was asking for it."

As the father of a teenaged girl with an intellectual disability, my own fears are simple and clear. Schuyler is growing up in a society in which she is devalued twice over. And that fills me with a deep, enduring sadness.

Not just because I can't always be there to protect her. But also because I shouldn't have to be.

May 19, 2014

The Thin Line Between Wrong and Wrong

Today at Support for Special Needs:
But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.

May 18, 2014

"...and my heart is closing like a fist."

Schuyler and I are at a quiet burger place. We're having a late lunch after working on a homework project most of the afternoon, and there are only a few other people here. The burgers are good, and they have wi-fi and milkshakes. She's on her iPad watching Netflix, and I'm on my laptop catching up on some work. It's not perfect, but it might be close.

The doors open, and a high school cheerleading squad enters like a tsunami, followed by their parents and friends. The parents are almost comically loud, and the boys are posturing and preening with a forced casualness. The girls are energetic and interchangeable, matching uniforms and identical hair and high wattage smiles. They have quintessential Texas suburban names like Brooke and Madison.

The noise is intense, that much more so for the contrast with the near silence only a few minutes before. I hunker down like a curmudgeon, but Schuyler simply ignores the swirl and noise at first. She's engrossed in whatever movie she's watching. It occurs to me that five days a week, she occupies a world full of teenage chaos. She's unflappable.

Eventually Schuyler begins to watch the kids as they run around, groups forming and breaking up and reforming minutes later. I realize as I watch that this is how I'd hoped Schuyler's cheer squad would behave this year. All my misgivings about Schuyler becoming a cheerleader had been balanced by this idea of a bond between girls, a protective group dynamic. I can see it in this group, in ways that I never saw it in Schuyler's squad. Here there are no outliers, no girl trying to fit in, attempting to join the discussions before finally sitting apart.

There's no Schuyler in this squad.

I can't imagine what Schuyler is thinking, although it is clear that she's very deep in thought. I sneak a few photos of her, trying to catch the reverie in her eyes. I think I manage. When I show her the photo I like the most, she smiles. I ask if I can post it, as I always do, and she says yes.

"Does this remind you of your cheer squad?" I ask her.

"A little," she says. "They're having fun. I wish we had fun."

She watches the girls a bit longer, and her face isn't sad so much as resigned, perhaps. The day before, she and Julie went on a trip with Schuyler's middle school band to a local water park, and the report back from Julie was reminiscent of the year before, and the year before that. It was a repeated sequence, Schuyler trying to break into a group of friends and running with them for a short while before being left behind. Schuyler can be a hard kid to be friends with, I understand. She's excitable and handsy, in that way that many nonverbal kids can be even after they grow older and develop speech. Crucial early childhood years with no expressive language have trained her to communicate with a kind of physicality that can be awkward now that she's a teenager.

Now, the next day, she has withdrawn into herself, not morosely but with a kind of sigh. This is the cycle of Schuyler. She tries to integrate socially, she succeeds at first but all too soon falls out into solitude, and spends some time regrouping before going back into the fray. It's not all because of her disability, I know, because I function in much the same way, and today, Schuyler and I are both turtles pulled into our shells.

Seated in the middle of this cacophony, we've got our walls up. And it's okay. It's not ideal, but it's what we need.

May 17, 2014

Borrowed Happy

"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." 
- Stephen Chbosky, The Perks of Being a Wallflower

This is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.

I've been thinking about happiness lately.

(Because of privacy rules, this paragraph is going to be vague. Sorry, I know that's irritating.) I recently embarked on a venture of sorts, one that I thought might lead me down a new path, one that would make me genuinely happy. It ultimately didn't, and I'm taking that failure particularly hard, I won't lie. I feel foolish, and I feel disposable, and if there's a worse way to feel, I'm not sure what it might be. I aspired to something, and my wax wings melted pretty quickly.

The thing is, and I think this is significant, I can't remember the last time I did feel authentic happiness. I know it's been a very long time. If the idea of being truly content with my place in the world is so elusive that I can't even tell you how long it's been, I guess maybe that's an issue. I thought I could see the path until this week. I can't, though.

It's important to note that I'm not some sad mopey bastard with not an ounce of happiness in my life. I think rather the opposite. And when I find my confidence again, as I will shortly, I'll be fine. But it's an undeniable truth that the true satisfaction I find myself feeling is almost always a result of Schuyler's happiness. It comes in things large from time to time, but it's mostly the small joys. A monster movie well-realized. A trip to a comic book store that neither of us expected until we found ourselves standing outside. A joke we've told each other a thousand times. ("Knock knock!" "Come in!")

Schuyler experiences joy, and as a result, I feel some of that reflected warmth as well. I suppose, like a lot of parents (Julie very much included), my own happiness has probably become too caught up in my kid's. I've become dependent on the borrowed happiness I get from her.

If that sounds desperate or sad, I guess perhaps it is. But as I stand here at the end of a shaky week, it might just have to be enough, at least for now.

May 12, 2014

Advocacy, with Heart

Today at Support for Special Needs:
There's a balance to be struck, I imagine. We don't want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our intuition to guide us.

May 5, 2014

On Early Intervention

Today at Support for Special Needs:
When Schuyler was born fourteen years ago, she was (perhaps irresponsibly) placed into the hands of two people who lacked even the most basic experience with a baby. To make matters worse, at least one of those people was an idiot. (SPOILER: It was me.) I shouldn't admit how many times I looked at Schuyler and simply said to myself, "Oh my god, I have a baby and she's still alive. This is one lucky damn baby."