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

October 28, 2017

The Big Fall

I’ve always known that this fall, and I mean specifically the autumn of 2017, was going to be a big deal. The numbers line up in an interesting way. If you’re a young person and you’re having a child at the age of thirty-two, do the math. It means you’ll turn fifty the same year your kid turns eighteen.

Which is what’s about to happen here.

It’s funny how you can look forward to, or perhaps dread, a coming change and still be at least mildly surprised at how it manifests itself. I guess that’s been a constant in raising Schuyler, and I suppose in parenting any kid with a significant difference. The only thing you can count on is when those anticipated moments arrive, they won’t play out exactly like you thought they might. Blessing, curse, whatever. An unconventional life is what you get.

For Schuyler, her eighteenth birthday is arriving faster than she wanted, I think. There are things to consider. She’s going to be added to our bank account soon. (Oh, the vast treasures that await her from that yawning pit of gold!) We’re exploring all the limited guardianship options, trying to strike that balance between the independence she deserves and the protection and help she still so desperately needs. School is winding down, with all its irritations and dramas but also its safety and federally-mandated giving-a-damn about her welfare.

She’s had a pretty good senior year so far, I think. She’s taking some interesting classes, including an outdoor education class where they learn about camping and outdoor living and survival skills, so she’s set for life in post-apocalyptic Plano. And apparently they’re learning to use power saws in her Theater Tech class, so absolutely nothing to worry about there. Significantly, after four years of marching band and inexplicable seizures in the stands during football games, we finally figured out how to stop them using sound-dampening ear muffs (designed for gun enthusiasts, ironically for this snotty liberal family). Nice that we solved that issue in time for her last five games. Well, what are you going to do?

I spoke to her band director recently, and he noted that Schuyler has come a long way since last year. She’s more confident, quicker to reach out to her classmates. Her social anxiety is still there, but she hates it and how it holds her back, and so she’s powering through it in ways I never learned how to do.

The ultimate test of that comes next week, because, and I can’t emphasize enough how momentous this is, Schuyler was asked by a nice young man to go to the Homecoming dance next weekend. If you don’t have a kid with a profound difference, you might not get what a big deal this is. Not because a kid is doing her a favor and taking her, which is how these kinds of things tend to play out in our popular media. No, it’s a big deal because someone saw past the extra work it takes with someone like Schuyler and saw the reality of exactly how amazing and unique she is. It’s a big deal because someone picked up an emerald in an unlikely place and recognized it for the valuable gem it is.

Schuyler and kids like her spend so much time on the outside of those social spheres. Even in campus communities like Schuyler’s, where she is generally well-received and accepted, it can sometimes feel like there are places she and her different classmates simply don’t travel. Homecoming is one of those, until it isn’t. Schuyler has asked about Homecoming and Prom in the past, and I haven’t known what to tell her. Now I can simply say “You’re going, and your dress looks FANTASTIC, and you’re going to have a big ol’ Texas mum the size of your head, and I’m going to take an embarrassing number of photos, and shut up, I’m not crying, YOU are.”

And a month and a half after that, four days before Christmas, she will turn eighteen. Just like that.

A month before that happens, however, I will celebrate, if that’s the right word, my own significant birthday. Let’s call it “forty-ten”. I’m torn between being slightly horrified by that fact and at the same time mildly and pleasantly surprised that I made it this far.

Pulling up to the fifty station has been occasion for a lot of self-examination, as I suspect it is for most people at this age. I’ve been facing some truths about myself that perhaps I’d internalized for a while. It’s probably not unusual to reach a point on your life’s calendar where you begin to question what you’re doing and how much it really matters. I’ve been looking at the world, not just my place in it, and it’s becoming harder and harder to imagine I’m making much of a difference.

I speak about disability issues, both in writing and in front of conference audiences, and the older I get, the more impassioned those species become. A few years ago, in a presentation in Ohio, I transitioned from mostly speaking about assistive technology and special education issues to a more activist, disability-rights-as-human-rights, “to the barricades and lets set something on fire” kind of speech. I’m good with that; I feel more driven to that kind of advocacy, particularly as assistive technology becomes a smaller piece in Schuyler’s life, as it inevitably must.

This past year has been tough, though. I don’t think I’m alone amongst disability advocacy writers and speakers in feeling that way. I stand in front of groups of special educators or speech language therapists, and I love them for what they do. But I’m also aware that I’m not reaching very many people who aren’t already with me. They have strong and beautiful voices, but they’re still the choir, and I’m preaching to them.

And then I turn on the television or wade into the swamp that Facebook has become, and I see people gleefully talking about intentionally taking advances away from people with disabilities. I hear people from all over the political spectrum calling each other “something-tards”, and the same tired old “free speech versus being a goddamn decent human being” arguments raging. I watch brave fighters in wheelchairs forcing the police to carry them away from protests because they refuse to move, refuse to be silenced. And that’s incredible, that’s a level of bravery I don’t see very often, but I ask myself “Why are we in a place, in 2017, where disability advocacy has again become a literal fight for existence? How did that happen? And why are people like myself not making any progress in stopping it?”

I’m working on another book, which I’ve said before and meant before, too. I’d describe it as less memoir, more unhinged manifesto. Now that Schuyler is leaving school, I guess I feel like it’s an appropriate time to revisit her world, and the bigger, rougher one she’s swimming out into. But my faith in my ability to effectively light fuses has been shaken, and I’m not sure how to get my mojo back.

I think I’m a fair writer on a good day, but while it satisfies something crucial in my soul, I wouldn’t say it makes me happy. And advocacy for me is part penance, part mission, one that I couldn’t turn away from if I wanted to, which sometimes, honestly, I’d kind of like to do. As I approach fifty, I do so with a sense of feeling slightly untethered.

The one thing that I find myself turning to after all these years is music. When asked what I do, my first impulse is still to say “I’m a trombonist”, although given the evidence of what comes out of my horn when I play these days (besides dust), perhaps I need to brush up a bit more. Music is the thing that makes me happy, even though I’m probably no damn good at it anymore. I’m going to grab onto that for a while and see where it takes me.

For our birthdays, Schuyler and I are wishing for big things. She wants a tattoo, and the old “Oh, sorry, we’d love to make that happen but the law says you have to be eighteen” dodge has finally come home to bite us on our asses. So, a tattoo it is, and to be fair, she’s got some good ideas. Also, and this is kind of shitty of me to say, but I’m not sure I have faith in her pain tolerance. She may end up getting a comma, in a twelve-point font, before she bails. But she’s a resilient kid. Or young adult, really.

As for me, I want to learn a new instrument, an unusual one called an ophicleide. Schuyler wants to be the one who gives it to me, so much so that she started an online fundraiser, which did my old man heart good. She’s a much nicer kid than I realistically should have ever expected to produce, and perhaps just getting to take undeserved credit for that is gift enough. Also, I suspect she really wants to hear me moo like a cow.

So, a dragon tattoo and a 19th century French fart horn. We’ve got this birthday thing covered. The rest of it, the big, broken world and the shrinking pool of empathy and the coming void that I’m trying to hard to ignore? They can wait.


October 3, 2017

So it goes.

I haven't written much about Las Vegas. Part of the reason is that it turns out Schuyler and I have a random weird association with the event. Nothing exceptionally personal, but one of those “goose walked over my grave” kinds of things.

Almost eight years ago, two of our dearest friends got married in Vegas, and since it was on Schuyler’s tenth birthday and they adore their goddaughter, they turned their reception into a birthday party for her as well, with a beautiful cake and some of the people she loves most. The photos I took of Schuyler that evening are among my favorites ever, as are the memories we made that day. The ceremony was held in a beautiful chapel in the Mandalay Bay Hotel. The reception? In a very fancy suite on the 32nd floor.

Yeah, that one.

So there’s some extra feelings about this tragedy, but not because I think there’s anything so grim in the world that it can automatically besmirch a perfect day just because of dumb coincidence. But it does mean that when reporters describe the scene that took place inside that room, I can see it vividly in my head.

I dreamed last night that both events were happening at the same time, with love and laughter and cake and most of all people I love, including a little girl in a pink plastic birthday tiara who happens to be the whole world to me, but also with a dark figure skulking behind everyone, moving from window to window. I was the only one who could see him, but for some reason I couldn’t tell anyone. That was an exceptional shitty dream.

So yeah. That fun fact has tied my tongue a little. More than that, though, I simply don't have much left to contribute. I feel like I said what I needed to say after Sandy Hook, but as others have pointed out, apparently we as a society have decided that dead six-year-olds are the price we're willing to pay in order to make sure gun fetishists keep their unfettered access to weapons of mass murder. Who am I to tell society they're wrong?

A couple of weeks ago, there was a shooting in Plano, blocks from my apartment, that ended up being the worst mass shooting in the US in 2017 so far. I'm shocked that it took this long to lose the title, honestly. I drive by it a few times a week, including this morning, and I watch it slowly turn from a crime scene surrounded by police cars and news vans to a memorial site covered with wreaths and teddy bears to what it is now, a sad and darkened house with one simple cross in the yard. Soon it'll just be property for sale. And soon Vegas will go back to being a place people go to party and gamble and forget how fucked up the world is, even in the shadow of Mandalay Bay.

And we'll forget, mostly. Not because we don't care, but because there'll be somewhere else stained in blood on our screens. New faces, new frenzied chyrons, new central casting terrorist bad guys (if they are people of color) or lone wolves with mental illness (if they're white). This is a show that never gets cancelled.

There’ll always be another one, and eventually a worse one, because we bought this scenario with the blood of children. And if there’s one thing this nation appreciates, it’s how to get our money’s worth. If you can convince yourself not to care about strangers who die, suddenly our big loud gun hobby just became a bargain. We like bargains in this country.

And so it goes. See you at the next one.

July 27, 2017

Season of Change

This week at Support for Special Needs:
Excerpt: 
This will be Schuyler’s senior year in high school, so everything she does will be one in a series of “the last time I’ll get to do this” experiences. For Schuyler and kids like her, much more than for their neurotypical classmates, this is daunting. Schuyler’s future remains clear and imaginable, if not entirely predictable, for maybe ten months. After that, it’s a wall of creeping mist. Does it conceal rich and meaningful adult experiences, or is it a Stephen King kind of mist full of fear and danger and face-eating monsters? Your guess is as good as mine.


(NOTE: This will be my last post at Support for Special Needs for a few months; the site is going on a hiatus. I’ll continue blogging here after this week. The only change in the content will probably be more F-bombs. So you’ve got that to look forward to. My thanks to Support for Special Needs for giving me space to do my thing over the years. I hope to be back there in the near future.)

July 17, 2017

Warriors

Today at Support for Special Needs:
Excerpt: 
Social justice warrior. SJW, to use the not-quite-clever abbreviation. Why would that ever be an insult with any real bite? To those who use that term in a derogatory way, I suspect it sounds funny because they’ve never lived a life where societal injustice has ever left a mark on them or anyone they particularly care about. Do you occupy a world of privilege without ever actually looking outward with empathy or compassion? Then I suppose the idea of people who fight for the dignity and equity of vulnerable populations might seem silly to you. I’ll give you that.

June 28, 2017

The Monster We All Feed

Today at Support for Special Needs:
Excerpt:  
We live in a society where rape culture isn’t just a thing, but a gigantic thing. It’s a monster that we feed constantly, with our popular media and our societal privilege and an institutionalized misogyny that permeates our judicial systems and is now entrenched and protected at the highest levels of the executive. I wish I’d done more in the course of my life to fight that culture of rape and misogyny. I wish my commitment to fighting it had begun in my heart because I’m a human being and not because I’m the father of a daughter. Like the roots of my disability advocacy, it’s a shitty reason for me to care. As a privileged white male in this country, I’m the problem. I should have been talking about this for decades. I have a lot of catching up to do; many of us do.

June 16, 2017

Father’s Day snapshot

Today at Support for Special Needs:
Excerpt: 
When Schuyler and I walk together, she’ll still take my hand or lean against me. She’s more affectionate now than I probably have any right to expect. I always tell myself “You’d better enjoy this; one day she’ll be too embarrassed to show you much affection in public.” But I don’t know. She’s seventeen now, and while she’s still changing and learning so much as she rockets towards her future after high school, it’s starting to feel like we know the person she’s going to be. Looking at Schuyler now is to see the young woman she’s going to be, and probably already is. She’s got an impossibly big heart, and the hard world seems to be failing in its constant mission to shrink it.

May 31, 2017

Productive

This week at Support for Special Needs:
Excerpt: 
So many changes. So much uncertainty. The universe just strapped a rocket pack to Schuyler’s back. We shall see what this phase of her life ultimately looks like, and how well she’ll do as she steps out into a world of superficial but pervasive human valuation. It’s a lot to take in, and I am perhaps more worried about her than I’ve been at any time since her diagnosis fourteen years ago. But even with all her anxiety and also my own, I have to say it. I like her chances.

May 26, 2017

Another Coda

Today at Support for Special Needs:
Excerpt: 
Her ultimate survival of her junior year is in large part due to the people who watch out for her, quietly and without drama, and who make it a little easier to put her on that bus in the morning and send her once more unto the breach, dear friends. Schuyler’s true friends have turned out to be the ones we didn’t see coming. There are the band directors who have watched out for her and striven to understand what makes her tick and to build a safe but unrestrictive space around her. There’s the assistant principal who has taken exactly ZERO of her nonsense but who has become her absolute greatest advocate on her school’s staff. Then there are the members of her percussion section who have pushed her but who also love her dearly, as they made crystal clear at a percussion party last weekend in a moment that most certainly did NOT make me cry, I have allergies, shut up. And there are the countless people who see her at school and like what they see and greet her every single time they see her. Walking the halls with Schuyler is like hanging out with the Fonz.


May 13, 2017

What she needs

I haven’t posted over here in a while, not exclusively. I’ve been engaged in a more professional weekly blogging gig at Support for Special Needs, and I’ll be back over there next week. This has been a little two week hiatus, albeit an unplanned one. I try not to get too insanely personal or profane over there, and in some ways a slightly more measured tone is probably good for me. When I’m over here, there’s no telling what I might say (balls), after all. I guess this has just sort of become my personal little sandbox now, and that’s kind of nice. (Asshole! Tits!)

I guess the primary reason I’ve taken a couple of weeks off from the other more professional site has been not a lack of experiences about which to write, but a persistent string of incidents that felt too personal to get paid to write about. Getting paid to vent feels a little weird, although I’ve certainly done it before, I guess. Without digging to deep into the details, if there’s been a running theme over the past couple of weeks, and maybe a little longer, it might simply be this. Schuyler has been used very badly by a lot of people. Those include some shitty little friends-who-aren’t-such-great-friends-after-all, a boy who made what can only really be described as a sexually harassing remark to her in his very public place of employment (and the thunder is still being called down from the peak of Mount Daddy-o for that one), and the earnest teacher who believes she truly understands Schuyler but who very, very much does not.

Schuyler has been used badly, and she has stumbled a bit as a result. I know we have a responsibility to discipline her when she makes poor choices, and we have, very much so. But I can’t help but notice that her shitty little friends haven’t suffered any consequences for their actions, which included stealing Schuyler’s iPad and sending horrible messages to a really nice girl in her name. The boy who made a horrible remark to her is protected to a certain degree by his own disability, and I’m not opposed to that, of course. But he keeps his job with minimal consequences, and the school won’t even talk to him about the incident because it didn’t happen on campus so their hands have the appearance of being clean. And a teacher who was supposed to help minimize Schuyler’s social anxiety and awkwardness has instead attached booster rockets to them and sent them hurtling skyward. Schuyler has been left to pick up a lot of pieces this week. It must be said that she helped scatter them, to be sure. But still.

I’ve said before that Schuyler needs overbelievers in her life, and that’s never been more true than now. She’s got a few. Julie and I, certainly. We’ve got an IEP meeting next week, and I think it might be an ugly one, but that’s okay, because it’s always worth the ugly if that’s the last advocacy option. We’re ready to release the Kraken. We’re ready for a whole Kraken rodeo if necessary. (Yippee-ki-yay, motherfuckers.) Schuyler’s godparents are always prepared to listen to her, and give her good advice without letting her get away with any shit, which she will absolutely try to do because she’s seventeen, and because she carries my buggo DNA. And she’s got a few adult friends out there watching out for her.

But Schuyler needs more overbelievers. She needs them at school most of all, where they are in short supply outside of band. Just yesterday, she found out that she was rejected for the campus club that she wanted to join, one whose members help kids with disabilities. The reasons mostly revolved around her difficulties with communications and independence, the very life skills she’d be likely to hone if she were accepted. Schuyler’s had a rough year, and roughest of all has been when she’s made mistakes and no one has been there to guide her into better waters. Schuyler’s had plenty of opportunities for tough love life lessons this year. I’m tired of watching her endure them. I’m inclined to let her breathe a little, but that opportunity will apparently have to wait a little longer.

My greatest frustration with Schuyler’s current school (outside of band, where she is well watched over) springs from how they often seem like they’re in a hurry to be done with her. I can almost hear them counting the days. But honestly, I might be counting, too.

This morning, I’m sitting in the stands watching Schuyler play baseball with her Miracle League team. If you want to see Schuyler in the wild, this is a good place to observe her. Schuyler loves Miracle League, not because she’s an especially gifted player (although she does make a couple of pretty sweet plays today, I’m happy to report), but rather because here is where she feels free to cut loose. Her big laugh is easily heard from the stands. She dances to everyone’s walkup music, she jokes around with every player around her, and she gives out hugs and high fives to players on the other team as they visit her at third base. Seeing Schuyler like this is to be reminded that she’s got the biggest heart of any person I’ve ever met, and likely that you’ll ever meet, too. Here on this playing field, she’s not a collection of expectations or evaluations. She’s not disappointing to anyone who expects her to step into the holes they’ve dug for her. At this moment on a spring Saturday morning, with her backwards-turned cap and her bright pink socks and that atomic smile, Schuyler is all potential. She is as deserving of belief as she has ever been.

I love this young lady, this little girl who isn’t a little girl, and yet kind of is. My patience is being tried, but not by her. I don’t let her get away with much; I’m probably a lot stricter of a father than you imagine me to be. But she’s at a crossroads right now. She needs grace, and she needs encouragement. She needs to be reminded of her strengths, because she has so many. She needs a more empathetic world than the one we currently live in.

Schuyler needs more overbelievers, and she needs them rather a lot.


April 27, 2017

Safe Spaces

This week at Support for Special Needs:
Excerpt: 
Safe spaces seem antithetical in some ways to the idea of eventual independence, but the truth is, we all need our supports. It’s different for kids like Schuyler as they grow out of childhood, of course. Her independent life is probably always going to come with an asterisk, and the thing I’ve been working on lately, with a good deal of success, is being okay with that. Schuyler requires safe spaces, but they’re not fake places, nor are they segregated or isolated. And within those tended gardens, I think astonishing things are going to grow.

April 19, 2017

I think I’ve got a quarter if they need one.

Today at Support for Special Needs:
Excerpt: 
Weird? How are we measuring “weird”? What does “weird” look like for someone like Schuyler? Or for anyone else? I mean, we spend weekends driving around looking for invisible monsters to catch with our phones. Our threshold for weird might not necessarily line up with the purveyors of this particular behavioral inventory.

April 6, 2017

Monster Island

Today at Support for Special Needs:
Excerpt: 
I’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusiastically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach and looked hard for sea creatures on the sand. But in the end, it was a very familiar monster that found her.

March 29, 2017

The Seventy-five Percent Solution

Today at Support for Special Needs:
Excerpt: 
For Schuyler specifically, and for no doubt a great many of her peers, having the ability to pass for neurotypical in surface-level social interactions has probably given her an ambitious view of what her future could look like. If she can pass 75% of the time, that’s probably enough to convince her that she could take on a life of total independence. And that’s great, but it’s also a problem, because that other 25% is where heartbreak lives.

March 2, 2017

Spaces for the Hard Stuff

This week at Support for Special Needs:
Excerpt: 
Schuyler continues to build a world around herself, and sometimes that means making space for the monsters and the earthquakes and the hidden traps that wait to spring out and destroy the careless. As a parent, it’s tempting to try to soothe the world’s edges, but of course that’s counterproductive, particularly with a seventeen year-old, even one as different as Schuyler. She sees the grief of others and she tries to take it on herself, partly because she is literally the most empathetic person I’ve ever known, but also, I think perhaps she’s trying it on a little. Terrible things happen to good people, Schuyler observes, and so she plays with that grief and that heartbreak in her imagination, just in case she ever needs it for herself.

February 2, 2017

From the bottom of the sea

Today at Support for Special Needs:
Excerpt: 
Schuyler's world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn't quite the same as that in which the rest of us live. She's got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there'll be no shipwreck this time.

January 25, 2017

This is why.

Today at Support for Special Needs:
Excerpt: 
Schuyler was surrounded and engulfed and protected by a sea of women, and she understood, I think maybe for the first time, just how large her tribe could be. As she grows older, Schuyler's people becomes a more inclusive group, more intersectional. She took a big step at the march. Her disability advocacy took on more feminism that she'd felt or shown before. Her world grew bigger, and with it her protest and her advocacy.

January 19, 2017

Exploring Worlds Both Dark and Lovely

Today at Support for Special Needs:
Excerpt: 
In taking my own focus inward to her more immediate world and trying to help as best I can, I feel like maybe I can recapture my own sense of autonomous self. I can't solve the Big Thing, but I can tell her what it was like when I was seventeen and trying to figure out if love was a thing for me. I can tell her what I got wrong, which weirdly seems to give her comfort. I have value as a cautionary tale, I suppose, which is true of my adult, parenting self as well. So many times, I feel like my fatherly approach to the walls that stand in her way is to keep smashing my face into them over and over until I find a brick that's loose.

January 4, 2017

Desensitized

Today at Support for Special Needs:
Excerpt: 
I recently read an article that posed a question that honestly hadn't occurred to me before. Can the perhaps inevitable hyper-vigilance that comes from parenting a child with a disability result in (or manifest as a symptom of) Post-Traumatic Stress Disorder? I'm mildly surprised that I'd never thought of it in those terms, since the obvious answer is yes, of course it can. And the question is more complicated because for parents of kids with disabilities, hyper-vigilance isn't necessarily an inappropriate response. Terms like "hyper-vigilance" and "helicopter parenting" don't carry the same meanings to those of us taking care of kids with disabilities. For many, they are meaningless descriptors. A constant state of vigilance, near-constant supervision, cradle-to-grave worry, these are necessities for a great many special needs parents. The vocabulary of the abled fails us in that regard. And PTSD may just be one of those things we file away with all the other uniquely unsettling stuff that comes with the territory.

December 28, 2016

"At least I think that's so..."

Today at Support for Special Needs:
Excerpt:  
I'm not going to try to pretend I'm hopeful, or that I believe the inherent goodness of my fellow citizens of the world is going to be our salvation. Maybe I should. Perhaps the first step to making it rain is seeding the clouds, I don't know. All I know for sure is that if 2017 is going to be survivable, if we're all going to get out of this intact and not epically broken, it's going to be because we did two things. Two things, just two, that's what I believe is necessary. They're easy, and they're hard. We need to take care of ourselves. And we need to take care of each other, in a very meaningful and personal way.

December 21, 2016

To my Heart, at Seventeen

Today at Support for Special Needs:
Excerpt: 
You know the truth, which is something we've always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You've simply refused to accept those limitations as concrete. You've shamed those of us who've tried at various times to define the limits of the person who you can become. For that above everything else, I'm proud of you, heartburstingly so.