October 12, 2015

In with the New

Today at Support for Special Needs:
What will they see in this person, your beloved little weirdo who doesn't fit in anywhere? Will they have observed the things that set our kids apart already, or will they still be trying to fit them into preconceived spaces? Will they see your kid as a burden, or a challenge, or will they see the person you see, with flaws that certainly aren't invisible but which perhaps don't manifest in obvious ways? Will these new teachers be hesitant? Enthusiastic? Will they even know where to begin?

October 6, 2015

Disability Employment: A Topic Worthy of Awareness

Today at Support for Special Needs:
As a parent of a daughter for whom all this will depart the realm of the theoretical, I confess that the best part of this isn't the information that's available, although that's nice. For me, it's a great comfort just to hear someone else, particularly government agencies, say "Yeah, this is a big deal. Let's look at this and see what can be done." 
That's not a small thing, not at all.

September 28, 2015

Wonder On Loan

Today at Support for Special Needs:
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.

September 21, 2015

The League of Ordinary Gentlemen

Today at Support for Special Needs:
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.

September 14, 2015

The Myth of Safe Places

Today at Support for Special Needs:
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.

September 10, 2015

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.

August 31, 2015

The Elusive Place

Today at Support for Special Needs:
I guess for me, I'm simply looking for the place where Schuyler will be happy. I suppose I'm looking for my own happy place, too. Those two are bound together, I know. And as I've gotten older, I've come to see how complicated and elusive that might be. Now that she's a teenager, Schuyler's best bet isn't The Perfect School. And when she transitions to her adult living situation, her own level of success is going to be driven by factors depending less on the services she receives and more on the life she wants to build and the willingness of the world to make that space for her.