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

March 9, 2017

Inclusion is a work in progress

Today at Support for Special Needs:
Excerpt: 
So what do our kids need from an inclusive society, before we even consider their classroom environment? We could start with patience. And along with that, opportunity, in employment and independent living and carving out those places where my daughter Schuyler and people like her can develop their talents and use them. As a society, we’ve built this structure that values contribution, but in a very limited scope. “What do you do?” We hear that question and we know what it means. “How do you produce capital? How do you feed the machine?” And that’s not a very useful metric for people like Schuyler. 
(From my SXSW panel remarks)

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 12, 2017

Denial

Today at Support for Special Needs:
Excerpt: 
There are two kinds of deniers. There are the kind that are just goofy, like moon landing deniers. They're not hurting anyone, they're just being kooks, God bless 'em. And then there's the other kind. September 11th was an inside job, they say. Sandy Hook was a hoax. The Holocaust never happened. Donald Trump wasn't mocking people with disabilities. These deniers aren't just trying to change the narrative to fit whatever their ideology might be. They are erasing people, they are taking the struggles and the particulars of the lives of vulnerable people or people who have been destroyed by the world and they're simply sweeping it away, as if it had never happened. If there's pain there, from the agony of a family wiped out by a hateful ideology or an act of violence to the heartbreak of a parent watching the future president turn their children into a joke and an insult, well, that pain is wiped away with simply denial. Didn't happen. The media lied. You're being too sensitive. You're being politically correct.

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.

December 16, 2016

The Value of Protest

Today at Support for Special Needs:
Excerpt:  
Protest forms special needs parents into people we would not otherwise be, and sometimes honestly never wanted to be. We become accustomed to advocacy, to stepping up when doing so makes things weird for everyone else. We learn not to care about the awkwardness, because our protest is God's work, it's in the service of the thing that we do that matters the most, the building of an equitable place for our children to operate. Others may care, others may love our kids and want the best for them, but no one else bears the responsibility to get things right like we do. When our kids grow up, many of them will move in various degrees towards independent life, and more important perhaps, lives that have meaning, and personal fulfillment. Our kids will require accommodations in a world that is loathe to provide them, either in services or equal opportunities or even just a social narrative in which they are allowed to be fully human. The world pushes against our disabled kids, and so for as long as we are able to do so, we protest, and we push back.

December 1, 2016

The evolution of the dad hat

Today at Support for Special Needs:
Excerpt: 
The world of a teenaged girl with a disability is complex, in ways that aren't cute or sitcom-ready. We've discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It's terrifying as a father; it's more terrifying for a young woman with a disability, and Schuyler is old enough to understand what's going on now, and what's at stake. Ten years ago, she was worried about werewolves. That's not what's waiting for her now, though.

November 23, 2016

Thanksgiving 2016

Today at Support for Special Needs:
Excerpt: 
Through it all, Schuyler doesn't spend a lot of time reflecting on the hard stuff, certainly much less than her moping, sad-sack father does. She sees a world that she doesn't entirely understand, and she grabs at it, claws at it for the riches it hides from her. She adores her friends, even when their behavior baffles her. She trusts in people, right up to the moment they let her down, and then a bit more after that. Schuyler loves her family, and that includes her godparents and the people she has made a family space for in her heart, with a depth and unashamed loudness that I've literally never witnessed in another human being ever. I'm not objective in my admiration of Schuyler, but I'm lucky enough that I simply don't have to be. I have the honor of being the father of the most amazing person I've ever known, and I might forget to be thankful for all the other stuff, but never ever that.

November 17, 2016

The next day, and the next

Today at Support for Special Needs:
Excerpt: 
But the days roll past, and the Big Scary Thing becomes more and more background as the Many Small Monsters continue their work. We don't make peace with it, because when we close our eyes, it's always there. ("Ah, I can't remember!" cue laughter...) But we push it back as best we can, because the life he's mocking is a hard life, and it's hard and time consuming no matter who's the president. Our monsters aren't all that concerned with politics. Our devils don't vote.

November 9, 2016

The New Danger of Difference

Today at Support for Special Needs:
Excerpt: 
When Schuyler gets up tomorrow and faces her weary and deeply disheartened father, she will be told that what's wrong with America isn't those like her who are different, or who insist on their humanity without limitations. What's wrong with America doesn't belong to her.

November 2, 2016

A Simpler World

Today at Support for Special Needs:
Excerpt:  
I hate this election season, like I hate anything that I find difficulty in explaining to Schuyler not because it’s complex, but because it’s just kind of bad. I feel like every time she hears me explain why a person running for president would lie or mock someone who’s different or say gross things, it dents her a little. Every realization that the world can be awful leaves a little scuff. I hate trying to make sense out of a nationally known comedian going on television and using hate speech to tell the world that she and her friends aren’t fully human. I hate having to tell her that someone wants to be president of her country but they probably aren’t good enough at heart to deserve that job. I hate trying to distill a hard world into something she can digest. I hate having to sell injustice as one of those things that she’s just going to have to accept sometimes.

October 18, 2016

Two Brains

Today at Support for Special Needs:
Excerpt: 
I love Schuyler's brain, which might seem like an odd thing to say, given her own uneasy relationship with it. Schuyler's brain isn't like yours or mine, or anyone else's. It's broken, dramatically so, but that's not even close to the main point. The story of Schuyler's brain isn't that it's broken, but rather the extraordinary things she's accomplished with it regardless. Schuyler walks and dances and sings, and she laughs three distinct different laughs, including the one that I love most, the one I call her troublemaker laugh. Schuyler plays percussion in band; every autumn Friday night I watch as she plays the suspended cymbals, and I see her play at exactly the right moments, contributing the rising metal shimmer as the musical phrases of Carl Orff's epic Carmina Burana (music that originated inside his gooshy German brain, too) crest and ebb. Schuyler operates an iPad; her brain translates her thoughts into words on a screen, or in a text message with a dizzying array of digital stickers attached, because she's moved so, so far beyond emojis. Schuyler's brain drives her creativity, and it makes her go a little crazy for the boys, and sometimes the girls, at her school. Her brain gets sad, it becomes paranoid, and it makes extraordinarily poor choices from time to time. But it also contains all the love she has, a love that is big and fat and boundless and childlike and complicated all at once. I describe Schuyler as having the biggest heart in the world, but of course it's her weird but wonderful, inexplicably broken but beautiful brain where that love resides, right there next to her confounding little monster.

October 5, 2016

Small expeditions

Today at Support for Special Needs:
Excerpt: 
Years from now, I hope we see these small expeditions as the beginning of Schuyler's true adventure, the one she takes on by herself, in a world that may be as unprepared for her as she is for it, but which will be hers for the taking nevertheless.

September 28, 2016

Limits

Today at Support for Special Needs:
Excerpt:  
I've written many times about my duty as Schuyler's parent to be an overbeliever for her. I still think that's true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler's capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in her life. It's tempting to say that it's a good thing we didn't accept those limits at the time, but honestly, it wasn't even a choice. When your parental instincts call bullshit on expert opinions, you go with your gut. If you're right, boo-yah. If not, you regroup and you go on.

September 14, 2016

Toll

Today at Support for Special Needs:
Excerpt: 
Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid's childhood provides until it very much doesn't. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But it takes its toll.

August 30, 2016

The invisible monsters who walk among us

Today at Support for Special Needs:
Excerpt:  
Everyone cry out, because such a statement demands outcry. Ann Coulter stands proudly and feeds off of us, a vampire hungry for hate and sorrow and lights and cameras. But we stand up and we push back, because "standard retard" doesn't get to flutter out into the air without being swatted at. It doesn't do any good to protest, but it feels evil not to, so we speak up and then we turn back to our lives, our difficult but rewarding lives. Ann Coulter may be rich and she may be famous, but not one of us in the disability community would trade places with her, not for a moment.