Community Standards

This morning at Support for Special Needs:

Excerpt: 

Some of the different hats I wear in my life don't always compliment each other very well. Even though I hate the R Word with the zealotry of a late convert, I'm also a writer, and I don't take the cudgel against language without real hesitation. But as a writer, I have to accept that words have actual power, and when we use them, we have responsibility for the outcome. The concept of hate speech results from the acknowledgement that powerful things sometimes need to be checked. I'd prefer that in this particular case, the checks would be self-applied, and that simply basic humanity would lead you to look at a language containing approximately 1,025,110 words and pick one that didn't cause so much pain to a particularly vulnerable population. I'm not for banned language, as a rule. But I recognize that hate speech occupies a very particular place in our culture, and our response to it is especially important.

Mission Control

Today at Support for Special Needs:

Excerpt: 

There's something special needs parents might not tell you, although if you love us, you probably already know. We're exhausted, physically and emotionally, by the hard days, by the times when things fall apart and when our kids reach for the stars and fall to earth with a crash. But the good days, the ones where the successes outnumber the failures and there are more smiles than tears? Those days are exhausting as well. Even the successful days take a toll on us and require us to dig deeper wells than we might always be able to sustain.

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.

Uncivil Discource

Today at Support for Special Needs:

Excerpt: 

There are a lot of reasons I'm already disgusted and exhausted by this election season. If you want to understand, spend about twenty minutes on Facebook, or a minute and a half watching one of the debates. But perhaps the most disheartening for me right now is the intersection of politics and that old familiar ugliness, our society's propensity for using our most vulnerable population so cheaply and with so little regard for their basic humanity. I made a promise to never give my silent consent to dehumanizing our loved ones by saying nothing in the moment, and I intend to keep it. But it's sucking the life out of me, and I'm beginning to feel like if this is as good as we are, we deserve one of these embarrassments as our President. We deserve to be represented by our own kind.

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.

A Simple Season

Today at Support for Special Needs:

Excerpt: 

The world isn't an easy place for kids like Schuyler, but at times like the holidays, it can perhaps be a little more straightforward. I think one reason Schuyler adores this season so much is that for at least a little while, the rules become a little more clear, and a little more fair. It doesn't matter so much if disability makes things harder, because during the season of peace, the people around her perhaps try a little harder to be kind and inclusive. The world in which she lives, one that fascinates her even as it sometimes disappoints, it makes a little more sense at this time of year. And if I'm paying attention, her straightforward love for that grand, rough world begins to make a little more sense to me, too.

The Politics of the Low Road

Today at Support for Special Needs:

Excerpt: 

You don't have to be Donald Trump to take a spin on that low road, either. You can be the President of the United States or the Mayor of Chicago, and all your good works on behalf of the disability community can be tarnished by a careless moment or an entrenched vocabulary that is unable to surmount your pride or your bad habits. You can be an educator enjoying the sanctum sanctorum of the teachers' lounge as a safe place to express your frustration. You can be a teenager who might even know better but is afraid to step out of the immature culture of your peers. For that matter, you can be an author and parent advocate who only finds his better humanity very late in the game, destined to spend the rest of his life striving to do penance for years of insensitivity.

Real Monsters

Today at Support for Special Needs:

Excerpt: 

Schuyler doesn't understand what's going on in any comprehensive way. I don't know how to explain ISIS or Syria or refugees, and certainly not religious extremism or American jingoism. I tried to explain the Paris tragedy to her as best as I could, but honestly, I'm not sure I understood it all that well myself. I still remember the world before it lost its mind. I don't really have the intelligence or the stomach to make sense of it to Schuyler now.

Wonder On Loan

Today at Support for Special Needs:

Excerpt:

Last night, like everyone else lucky enough to have clear skies, we watched the rare display of a supermoon and a full lunar eclipse at the same time. As far as excitement goes, it fell short of, say, a lightsaber duel or an airplane race, and yet she loved it. She theorized that if she became a werewolf, her newly dyed hair would mean that she would be a blonde werewolf. As the moon disappeared and then shifted red, she watched with amazement. This was an unexpected experience, and those aren't always a good thing for kids like Schuyler. But to her, it was another gift from the universe. If I perceive that universe as sometimes cruel and sharp, Schuyler simply recognizes it as a fount of surprise and wonder.

The League of Ordinary Gentlemen

Today at Support for Special Needs:

Excerpt:

If you're a father and you're not committed to being an active, involved, pain-in-the-ass level participant in your special needs child's advocacy, I guess you're the one I want to reach the most. It's not that you're making it harder for the rest of us, because that's small potatoes to us. I've spent the last twelve years wondering if my daughter was going to die from seizures. I've spent that same amount of time trying desperately to keep her schools on track and to lay down bridges for her so she can cross the cracks that she could so easily fall through. The lazy societal expectation that's I'm not going to give a damn or get involved in Schuyler's care? That's not a scary junkyard dog. That's a chihuahua.

The Myth of Safe Places

Today at Support for Special Needs:

Excerpt: 

In the end, Hun-Joon Lee was devoured by an unsafe world. He was destroyed not by his disability, but by the monsters that we as a society have created, or at least allowed to roam free. He sat, unmissed, in a school bus on a hot day, and he paid the price for our complacence. Despite the sorrow of his family and the agonized guilt of those who failed him, and also despite the paragraphs I'm spilling out here in a failed attempt to wrap my brain around this, in the end, there's really not a goddamn thing to say.

The Tao of Daddy-O

When Schuyler was little, and I mean very little, back before she was even a real person just yet, I would worry about things. Some of my anxieties were sensible, regular parent stuff. Others were frankly kind of weird. I worried about big bitey dogs at the park in New Haven, and maniacs grabbing her out of her stroller on the upper level of the mall and throwing her over the side. And don't even get me started on those gaping rain gutters at the side of the road. I worried about a lot of monsters, although ultimately I guess I missed the real ones.

Sometimes, many times, I worried about what my bond with Schuyler would look like as she grew older. My relationship with my own father wasn't a very good template. He wasn't a gentle person with me when I was young, and as I grew up, my father softened but still never quite understood the man I was growing up to be. I think he wanted to sometimes, but he was perhaps limited in the scope and diversity of his thinking, and I was that walking cliché, the angry and unforgiving teenager. I always thought we'd figure it out one day, but it didn't quite work out that way. Four years after I'd last seen my dad, when I received the phone call from home, he'd been gone for a few hours already. He was alive one moment, chatting with a neighbor in his yard, and then he just crumbled, dead before he hit the ground. He suffered an aneurism in his heart, which I didn't even know was a thing. I was twenty-two. He's been gone longer than I had him now, but I don't think I ever actually had him, not really.

I never had a good example of the kind of father I should be to Schuyler, although I guess I had a pretty reasonable cautionary tale instead, and that was probably good enough. I never knew exactly how a father was supposed to be, so instead I just gave her me.

I didn't know back then if that was going to be enough. I'm certainly not sure now. But I remember a few things about being my father's son. I remember feeling like I wasn't being told the truth, which it turns out I wasn't, and I remember feeling invisible, even disposable, which as it turned out, I kind of was. I recall, in the center of me where the visceral memories live, wondering if my father loved me, and now, only four years younger than he was at his death, I still can't answer that for sure. It's taken me a long time to understand that whether he did or not isn't my concern, not really. Maybe he didn't. He probably should have; I was a pretty cool kid, relatively speaking. So that's on him.

With Schuyler, I've written many times that I could promise her love, and I could promise her the truth. I've probably dropped the ball on that second part more than a few times, but if there's something I think I can say for sure, it's that she's never asked herself if her father loves her. If I were gone tomorrow, she wouldn't spend the rest of her days wondering. And if that's all I ever gave her, I don't know. Maybe that's enough.

I believe Schuyler sees her father for who he is, and that's not always easy for her, I know. She watches me lose my temper, she hears me tell inappropriate jokes, and perhaps most importantly, she sees me when I'm sad. I used to worry about her, deeply concerned that she'd inherit my tendency toward depression. I still worry about it sometimes, but not as much now. Schuyler gets sad, and God knows she's got reasons to. But she seems to be made of stronger stuff than I am. I suspect she's going to be okay.

Schuyler sees when I'm in that little cave. She's observed it a lot lately, and I can tell she understands. We don't talk about it much, but she's cuddlier, quicker to hug and slower to let go. She'll sit next to me on the couch and just take my hand, or touch my shoulder. I don't know if she means to, but I feel like she's telling me I'm not alone, at the moments she senses I feel it the most.

When she was younger, I used to imagine, perhaps morbidly, what she would remember about me if I were gone. As she grew older, I'd be less of a memory and more of a constructed father idea. When I was really down on myself, I sometimes imagined that wouldn't be so terrible for her. She could have a real, live, fucked up father, or she could have a shining ghost, a phantom who would fill that father space, even just in her inventive heart, in ways I probably never could in real life. Tragic, to be sure, the little girl growing up without her father. But the world would step up and take care of her, and I'd be whoever she needed me to be.

Schuyler is now fifteen, almost sixteen. If I were gone now, she'd have memories of me. Actual flawed me, but one she seems to love quite a bit. I don't think I brag very often, and I'm not sure I feel like I have a lot of horns to toot if I wanted to. But if you were to ask me what was truly good about my life, and what I was proud of about myself, I think my answer would be pretty clear. I have a weird and wonderful kid, the very best of all possible daughters, and she loves the fucking shit out of me.

When Schuyler was younger, somewhere she picked up a word that she began to call me. I was her Daddy-O. I never thought it would stick, but it has. And as goofy as it may sound, it's absolutely and truly my favorite word in the world.

Schuyler is unique in all the world, in ways that go so far beyond human individuality. Even among folks who share her polymicrogyria, Schuyler presents in a way like no other. To the neuroscientists who have worked with her, she is a mystery, and a marvel. To them, and also to me, albeit for far different reasons.

And I am her Daddy-O. She has given me a name that none of her friends use for their fathers, and I like to think that she's signifying my own uniqueness, too. I'm not sure how true that is, but I take her affection as the gift that it is. I don't really know what I father is supposed to be, so I do the best that I can. Schuyler doesn't know, either, and so even if I am a disappointment, or should be, to her I am that thing that belongs to her and her alone. I am her Daddy-O. No one else gets one of those but her.

There's something strangely comforting now, knowing that if I were gone next year, or next month or tomorrow, Schuyler would have had a me that was real, and one she could remember as a person, as her Daddy-O. She would have walked down a path with me. It wouldn't be a perfect path, and we wouldn't have walked as far together as we would have wanted. But we would have had enough for her to figure out the rest of the way without me. She would know how to laugh and how to love, although if she learned them from me, she would have learned to laugh a little too loudly and to love imperfectly. Neither of those are all that bad, I guess.

I don't know much, either about myself or the future, near or distant. I feel like I know less and less every day, and to be honest, that has been troubling me a great deal of late. Touchstones crumble under our fingertips, and our hearts whisper possibilities in our ears until we hear them as truths. I'm struggling right now, to locate myself and to find my way, like I'm looking for candles in a kitchen drawer during a power outage.

Schuyler knows it, too. I give her smiles and jokes, and she accepts them, but she's the most empathetic person I've ever known. She knows the ground under my feet shifts sometimes, and she responds with love. With love, and with confidence in me, because I'm her father, her one and only Daddy-O, and everything else will sort itself out.

Schuyler believes this. It's important that I try to believe it, too.

Seriously. Just Stop.

Today at Support for Special Needs:

Excerpt: 

Is it fair, taking that word away from you? Don't you have a right to use whatever word you please? Surely brave patriots gave their lives at Lexington and Bunker Hill so that King George the Third couldn't keep you from watching reality TV and saying "This show is so retarded." I don't have an answer for you, because at this point, the question isn't about your rights. It's not. You're an American; you've got the right to say whatever you please. (If you're not an American, then check your local listings, I guess.) You've also got the right to eat that pizza with the hot dogs in the crust or vote for Donald Trump. Being an American means you can do all sorts of horrible things.

Twelve Years

Today at Support for Special Needs:

Excerpt: 

Schuyler's monster doesn't have a proper birthday. Perhaps it could be said to share Schuyler's. Even that doesn't feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn't yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.

Might Have Been

Today at Support for Special Needs:

Excerpt: 

Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest. I don't know if that's a plan for success or if it's going to bite her face off one day. I only know that it works for her, and it gets her through days both simple and complicated. 

And I know that in that regard, I envy my daughter very, very much. As I should. As should we all.

Tag Out

This morning, at Support for Special Needs:

Excerpt: 

I need to quit worrying about the people who are supposed to be helping our kids but aren't, or about the society that should be opening doors for them but is politely but firmly closing them instead. For just a little while, I need to step away from the fear, and from the sense of injustice and from the feeling that I am growing old at a far too rapid pace and that time is running out for me to be able to fix everything for my little girl before I go, because goddamn it, that's what fathers are supposed to do.

Schuyler and the Big Questions

Today at Support for Special Needs:

Excerpt: 

When speaking to groups where I know there are going to be a lot of people of faith present, I still talk about God. I talk about Faith and God and my own broken spirituality and what kids like Schuyler may be able to teach us about such things. I kick open the door to a conversation that isn't about convincing anyone or being convinced, either, but rather an exploration of perspectives that might just bring us all a little closer together. I'm not religious, and I'm certainly no Christian, but I don't need to be snotty about it and assume that believers won't listen to me or treat me with respect. I like those conversations. I try to draw them out with my speeches when it's appropriate.

No Easy Answers

Today at Support for Special Needs:

Excerpt: 

It's that time of year again, the beginning of the spring semester, when all the least fun parts of Schuyler's public school experience begin to rise up out of the swamp and demand attention. Soon we'll start worrying about the STAAR test, Texas's state-mandated standardized testing. It's the Godzilla monster that stomps through our little Tokyo ever year. We also begin preparations for Schuyler's next IEP meeting, and the future that it portends. (SPOILER: More monsters, pretty much forever.)

A World of Fairness

This week at Support for Special Needs:

Excerpt: 

I'd like to suggest a new attitude as we begin a new year. There's a lot of concern out there about fairness and balance and making sure no one gets anything they're not entitled to. I think we've got that covered. Perhaps it's time for a little imbalance. Maybe, just maybe, the world won't spin off its axis if we worry just a little more about those families for whom the idea of fairness has always been something of a cruel joke. Not charity, but just a little empathy. Perhaps a pinch more humanity than we've been accustomed to tossing into the mix.

Some Thoughts on a Very Very Very Bad Idea

This week at Support for Special Needs:

Excerpt: 

When news stories come out detailing the mistreatment of special needs kids, I tend to think that the best thing we can do is shine a light on them, to try to force change through awareness. I'm not always sure that actually works, though; when you turn on the lights, the roaches scatter and run under the fridge, but they don't actually go away. Maybe I'm just helping give the roaches a little exercise.