Showing posts with label nowhere near holland. Show all posts
Showing posts with label nowhere near holland. Show all posts

February 2, 2016

Viva Schuyler

Today at Support for Special Needs:
Excerpt: 
This weekend was a big risk. One week after her sixteenth birthday party and the bumps in the road she suffered there, we took Schuyler to Las Vegas to attend a surprise fiftieth birthday party for one of my best friends (and Schuyler's godfather). Last weekend, she was undone by a gathering of her school friends that she basically sees every day, over pizza and games. We followed that up with a trip to Las Vegas, a place that is the very physical manifestation of the concept of overstimulation. It's safe to say that we were concerned.

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.

January 4, 2016

Just possible

Today at Support for Special Needs:
Excerpt: 
We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.

December 28, 2015

A new year, a new opportunity

This week at Support for Special Needs:
Excerpt:
In 2016, we're not just going to be choosing a president. We're going to be establishing a new social narrative, or at the very least engaging in a more vigorous discussion than we've had in a very long time. If we can focus on our commonalities, if we can present a voice that isn't necessarily unified (because I know better than to think that is likely to happen), but at least harmonized, this year could present a real opportunity to create a national conversation about disability rights and our broken social model, a dialogue that effectively addresses the needs of disabled persons. This could be the year that society responds to the needs of this community reasonably and empathetically, rather than with "oh, god, not these people again".

December 21, 2015

16

Today is Schuyler's sixteenth birthday. I'm trying to wrap my brain around that, but it's daunting. My little girl is sixteen. Yeah, no, I'm still working on that.

So this is Schuyler at sixteen. She loves music, although most of what she listens to is a mystery to me now. Between what she picks up from her friends at school and her Teen Mix list on Spotify, she'd might as well be receiving transmissions from space as far as I'm concerned. I realize this puts me squarely in the center of curmudgeonly old fart territory, which is fine. Just keep off my goddamn lawn, thanks.

Schuyler occasionally mentions driving, although she doesn't push it too hard. I think she understands that for a number of reasons, including the reality of her past and also very occasionally present seizures, she's not ready. She might be one day, but not today, and not soon. She gets this, and she's not in a hurry to get started.

Like any sixteen year-old, Schuyler is working out who she is, at her own pace. She's experimenting with her look, with her hair color and make-up and other things that are age appropriate. (Her latest thing is asking to shave the sides of her head, which is getting a chilly parental reception; I wouldn't expect that particular look to make its debut any time soon.) She's become a pretty dedicated hat wearer, and complains almost daily about how she's not allowed to wear them to school. She wears her Polymicrogyria Awareness pin on her favorite hat, and she kisses me and says thank you every time she sees me wearing mine, which is pretty much every day.

Schuyler hasn't had a first date yet, although we encourage her as much as we possibly can. She's shy, something she comes by honestly, and she doesn't even remotely understand the rituals of teen community. I'm not sure anyone truly does, but Schuyler REALLY doesn't get it.

People like to make the same dumb jokes about dad not being ready for his little girl to date. And that's fine, because that's our societal narrative. But if I could have any wish for my daughter now, it would probably be for her to find someone who gets her and who wants to unravel the mystery of Schuyler. At sixteen, it doesn't feel like this is imminent, but you just never know, I suppose.


Schuyler is building a peer group, maybe for the first time. It's almost exclusively special needs kids like herself, and she's learning to navigate everyone's differences the same as the rest of us. It's tempting to imagine kids with varied disabilities coming together as a group naturally, and in some ways that's exactly what happens. Outsiders find their own. But there are bumps in the road, and she's learning to deal with those. I think she's doing pretty well.

Schuyler at sixteen is a girl who lives behind electronic screens, which is not particularly unusual for a girl her age. I sometimes worry about that, but those screens are her path to a larger world, for assistive speech tech and social media and direct communication through texting. I'll accept excessive Netflix as the price we're willing to pay for that.

At sixteen, Schuyler loves all things Star Wars. She likes manga and anime (I'm assured that these are different things) and putting on headphones to sing along to her music without reservation, often without awareness of how loudly she's belting it out. Unlike her earlier years, however, she doesn't particularly care when you point it out to her. Schuyler's got to sing. Everyone else needs to deal with that.


She still giggles when she sees a boy she likes. She epitomizes uncool in those moments.

She asks a lot of questions, even though I tell her she has to pay me a dollar if she asks ones I've already answered. (She's running up a tab.)

Schuyler has declared herself an agnostic, saying that she mostly believes in God, but thinks the Jesus story is silly. That hasn't changed in a few years, so I imagine she might just stick with that perspective for a while.

She wants to learn to cook. I'm hopeful that she wants to learn to clean, too, but you know.

She also wants to become a DJ, with the name DJ Space Monkey.

Schuyler still laughs loudly, runs and jumps around vigorously, touches the people she loves without hesitation and sometimes without much in the way of boundaries. She talks during movies in a stage whisper that isn't even remotely quiet. Being with Schuyler is a very physical and not at all subtle experience, something that no doubt comes from so many years of having to employ physicality in her communications. We try to help her adjust to a more polite community around her, but to be honest, it's one of the things about her that I'm the lest interesting in losing as she gets older. Typhoon Schuyler is the merriest of storms.

Most of all, Schuyler still wants to be a teacher. She gravitates towards advocacy in ways that as a parent I never dared to hope for. I'm not sure you can teach a child to be truly empathetic. You can only hold that door open. Schuyler's got the biggest heart in the world. She still wants to help others like herself, people "with little monsters of their own".

At sixteen, Schuyler is still the radiant center of the universe. Well, I can only speak for myself.

The Season of Beauty Found

Today at Support for Special Needs:
Excerpt: 
It's only a few days before Christmas, and even though I'm a dirty heathen, I find myself compelled to reach out to my fellow special needs parents. I understand that it's not necessary an easy or particularly merry time for many of you. I know that in some ways, this might be the very hardest part of the year. There's not much in the world with as much power to isolate us as a seemingly constant reminder that the standard holiday narrative is not our own. Happy and understanding families, smiling untroubled kids, a world filled with peace and love and acceptance, all of these can feel far away to us. The Norman Rockwell scenario fed to us by popular media can sometimes feel like it's winking at us and saying out of the corner of its mouth, "Ah, yes, but not for you."
Happy holidays to you all!

December 14, 2015

Small World

Today at Support for Special Needs:
Excerpt: 
When we can't pass and disappear into the world of the typical, the internet communities we build help us to feel as if in this smaller, more self-selecting world we've assembled, we're part of a neighborhood, and when someone is in trouble, it can sometimes seem like that family lives just down the street, and we were informed by a neighbor walking by. It is, as I said, a fiction, but it's one of the more valuable ones we have.

December 8, 2015

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.

November 23, 2015

The Softness of Island Living

Today at Support for Special Needs:
Excerpt: 
Things are different now. I wouldn't describe her current academic setting as inclusive, despite our very clearly expressed desire for such an environment for her. Significantly, I feel pretty confident that if you asked Schuyler for her preference, she would pick her present situation. She's more comfortable on the Island of Misfit Toys. You can keep your Lord of the Flies island, thank you very much.

November 17, 2015

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.

November 9, 2015

Monster Swag

Today at Support for Special Needs:
Excerpt: 
It can be a little frustrating, having to explain polymicrogyria. Other disorders with a great many patients receive a great deal of public awareness, as well they should, but it can feel like the oxygen in the room is very limited as a result. People ask a lot of questions based on their observations of Schuyler. Is she deaf? Does she have autism? Sometimes I go into the whole thing; other times, I just say she has a rare brain malformation and leave it at that. Sometimes I feel like being a teacher. Sometimes I'm just tired.

November 2, 2015

Another homecoming, of sorts

Today at Support for Special Needs:
Excerpt: 
It's no secret that letting go of Schuyler's chaotic, sometimes troubled but always adventurous childhood has been difficult, mostly because what lies ahead is so mysterious, and where special needs parenting is concerned, mysterious is never comforting. Every time she picks up a piece of her own advocacy, Schuyler puts down just a bit more of a deposit on the future. On her future.

October 26, 2015

Her Own Worst Enemy

Today at Support for Special Needs:
Excerpt: 
My little girl has had a lot to overcome in her life, and a lot of antagonists to face. Much of the time, however, her most daunting foe is herself. Her insecurity, her fear, her frustration, her occasional laziness, and her misunderstanding that if she plays her cards right, the world will feel bad for her and smooth the way.

October 19, 2015

Solitary Grace

Today at Support for Special Needs:
Excerpt: 
Adversity builds special talents, or so we've always been told. That might be bullshit, a way to feel better about the things that hold us back beyond just "Wow, that really sucks, sorry." But it feels true enough, I guess. I'm not sure if it's a scientifically measurable phenomenon, but those of us with special needs children watch them as they work to overcome obstacles, and we hope that their other senses and capabilities step up to fill the gaps. We hope for the same within ourselves, too.

October 12, 2015

In with the New

Today at Support for Special Needs:
Excerpt: 
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:
Excerpt: 
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:
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.

September 21, 2015

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.

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.