Showing posts with label schuyler. Show all posts
Showing posts with label schuyler. Show all posts

October 21, 2014

Deflated

Today at Support for Special Needs:
Excerpt: 
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

October 13, 2014

The Path to Self-Advocacy

Today at Support for Special Needs:
Excerpt:
Schuyler is never going to be a confrontational self-advocate, I feel pretty certain of that. She shies away from conflict, even as she holds the grudges that she develops as a result of it. Her own sense of justice doesn't always trump her desire to navigate her life with ease. She loves participating in marching band, for instance, even as she feels slighted by how she's treated (and more to the point, sometimes dismissed) by her band teachers from time to time. She's not interested in taking a stand, so she endures what she perceives as slights and focuses on the fun she's having. Sometimes she's a little student of Zen, in a way that I wish I could be but never am.

September 29, 2014

Two Simple Experiences

Today at Support for Special Needs:
Excerpt:
Now that Schuyler is up to her eyeballs in high school life, marching band has become something of a sink-or-swim experience for her. This has resulted in a few stumbles, such as when she took the field at last week's football game with big floppy shoes that were not just untied but actually unlaced because she couldn't do it and, for whatever reason, she couldn't find anyone to help her while the band was getting into their uniforms. The new independent model of Schuyler 2.0 has some bugs to work out of the system, but she's getting there.

September 15, 2014

The Key

Today at Support for Special Needs:
Excerpt: 
Schuyler's voice is no longer a thing to squeak out of her iPad in close proximity. It's a thing that can travel beyond her immediate space. In some ways, Schuyler has found a way, though the simple act of handing a speaker over to a listener or placing outside of her own immediate personal space, to improve upon the natural human voice that she has been denied. And in handing that voice over to another, she creates a strange kind of intimacy, better than a shout. In a loud room, Schuyler can put her voice in your ear. I can't do that, and I find myself ever so slightly envious.

September 8, 2014

The Other Talk

Today at Support for Special Needs:
Excerpt: 
Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don't discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn't eclipse Life, and the days we get with our kids shouldn't be entirely stained by our anxiety for the days we lose.

September 1, 2014

On Labor Day, 2014

Today, at Support for Special Needs:
Excerpt:
I'm not usually one for writing contrived holiday-themed posts here ("It's Arbor Day, folks, and special needs families just love trees!"), but I think I'm going to make an exception for Labor Day. There are a lot of hard working people in this country, but those of us in the world of disability parenting find ourselves surrounded by the hardest working humans on the planet. For our kids, finding success in school and in the world is a lot like being an astronaut. We understand that the person standing on the moon is an extraordinary individual, and we celebrate that person's achievement. We do so, however, with the knowledge that it took a team to support those efforts and help that astronaut arrive.

August 25, 2014

To the people like her, which is perhaps everyone

Today at Support for Special Needs:
Excerpt: 
When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She's growing up quickly; today is her first day of high school, after all. We're having conversations identical to those happening in other houses around the world, about how it's appropriate for her to be thinking about boys she'd like to date, or girls she'd like to date, for that matter. ("Or both!" she said during our last conversation about dating; she's going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she's working on them. And the thing is, only some of those doubts stem from her disability.

August 18, 2014

Unwanted monsters

Today at Support for Special Needs:
Excerpt: 
Schuyler understands her disability better now than she ever has before. I'm immeasurably proud of her for that. But every so often, when things are hard, she pushes back a little. She doesn't rage, she doesn't cry or fall into despair, all of which I imagine would be my own response if I were in her shoes. She simply goes on record as saying that she doesn't want it. She knows her monster doesn't require her permission to do its wicked work, but she denies it that permission anyway. I'm incredibly proud of her for that as well.

August 11, 2014

Deconstructing the Gentle Lie

This morning at Support for Special Needs:
Excerpt: 
Beyond mythological figures, there's the gradually disintegrating gentle lie we tell our children, the one that says that if they work hard enough or want it bad enough, they can do anything they want in the world. For kids with special needs, I suppose it's not all that different. As parents, we overbelieve, and we sell that overbelief to our kids, and that's not a bad thing, I don't think. As they grow older, like Santa, they begin to see the flaws in our lie, and as they deconstruct it bit by bit, they begin to incrementally build a more pragmatic truth in its place. They sniff out the path that does await them, the one that is meaningful and possible. As their parents, we can help, but in the end, it's not our quest. It's theirs.

August 4, 2014

The High School Chapter, Page One

Today at Support for Special Needs:
Excerpt: 
Schuyler started her summer band camp this morning, so I guess this is sort of the unofficial beginning of her high school years. Two weeks of 7am-to-noon rehearsals, a week of evening practices, and then ninth grade classes begin for real. I remember my own high school days, of marching band practice beginning in August, under a hot West Texas sun. It sounds miserable, and it was. It was also kind of glorious. In a weird way, I envy her, although it must be said, I also predict I'll be back in bed by 7:30.

July 28, 2014

The World in a Room

Today at Support for Special Needs:
Excerpt: 
The hard part comes in trying to help Schuyler decide what to give away and what to keep. We stay out of her way, even though honestly, she's not making a lot of progress. But it's up to her to decide, not so much what's appropriate to her age, because her age gives an incomplete picture of who she is and what's appropriate for her. No, for Schuyler, it's a process of deciding what is relevant to her now, to her life at this stage. When she starts high school in the coming weeks, I suspect her choices might change.

July 21, 2014

Eleven Years

Today at Support for Special Needs:
Excerpt: 
Mostly, though, the last eleven years have given me Schuyler. They've allowed me the time to let go of my selfish expectations of who I thought my daughter was going to be, and they've allowed me to adapt and appreciate and unconditionally love the weird and wonderful girl she is. It's the girl she is despite her condition, and because of it. And I'm the father I am because of the many mistakes I've made and the occasional things I've gotten right. None of us in this family are the people we were then. The past eleven years have been a crucible and a wonder. We all bear scars and the remnants of war paint, and we all shine a little brighter when called upon to do so.

July 14, 2014

Schuyler's Sense of Self

Today at Support for Special Needs:
Excerpt: 
It really is a beautiful photo, haunting and sweet. In most of her pics, Schuyler is laughing, and not gently, either. But as she gets older and more secure in her sense of self, and as she continues to construct and deconstruct her personal sense of who she is, the Schuyler she wants the world to know is more nuanced. She's growing up, and she knows it. I think it's beginning to excite her, the knowledge that she's in control of the person she is to become.

July 7, 2014

Independence Days

Today at Support for Special Needs:
Excerpt: 
Watching Schuyler and her friend navigate their shared space was an eye-opening experience for me. I observed the ways in which they connected, and watched them dance around the ways that they simply couldn't connect. It gave me a sense of what a friendship with a neurotypical kid might look like, as well as why it has been so hard for Schuyler to make those friendships work out for long. I don't always have a very good concept of how far Schuyler really is from the developmental norm of kids her age. It's not something of which I should be so ignorant.

June 17, 2014

"Once more, unto the breach..."

Today (a day late, sorry) at Support for Special Needs.
Excerpt: 
We've always advocated strongly for Schuyler to be educated in an inclusive public school environment, even moving to our current city to make sure she'd be able to integrate using assistive technology to bridge the communication gap between her and the typical world. I have to be honest and say that her current school situation is a poor reflection of that goal. There are a lot of reasons for that. It's a complicated situation, which is usually a pretty accurate way to describe the lives of special needs families. There are goals, and there is reality, and if you're lucky they might look a little bit similar. If you're very, very lucky.

June 14, 2014

Unseen Giants

I wrote a Father's Day piece for my friends over at BridgingApps. They're great people and I'm honored that they're featuring my words.

Happy Father's Day to all my fellow dads of the world. I hope you get a nice tie.
Excerpt: 
If you asked me that oft-repeated but generally useless question, whether or not I'd take my daughter's disability away from her if i could, I won't lie to you. My answer now, as always, would be yes, without hesitation.

Should we want to take away our child's disabling condition? It's a hotly contested question, but it misses the point. The thing we come to learn as special needs fathers is that it doesn't actually matter how we answer. No one is ever going to ask that question as the prelude to a miracle.

We can't fix, but we can see. We can look and really see our kids, and come to understand that their disabilities are a part of their construction, threads that run deep and true in their tapestry. We become caregivers, and we become champions. We learn to fight and we learn to nurture, in ways that the fathers of typical kids might never have to do. We don't allow ourselves to become Homer Simpson because our worlds won't work with that character.

June 9, 2014

Flygirl

Today at Support for Special Needs:
I don't think there's anything wrong with letting your kid dream past their disability. If it involves a small lie, I think it's not much different from the Santa story (SPOILER...) or the "anyone can be president" fib. (Watch Fox News for a few minutes, until your eyes begin to bleed, to see how the exception probably illustrates the rule.) Our kids are learning a great deal during their early years. That learning process involves more than finding alternate paths through the world. Kids like Schuyler are figuring out who they are, and how their disability can shape them even as they reject the idea that it should define who they are.

June 2, 2014

A Simpler Season

Today, at Support for Special Needs:
Many of us with special needs kids make noises of outward exasperation at the onset of summer, and we mean it, too. But at the same time, when pressed, I suspect many would admit that we're relieved, too. The schools will be giving us back our kids. Whether those schools have gotten it mostly right or mostly wrong, when we get our kids back for the summer, we leave a great deal behind. We're done, for the time being, with all the complications of negotiating school policy and modified curriculum and imperfect behavioral plans and all the modification required to make our beloved square pegs fit into those educational round holes.

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.