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.

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.

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.

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.

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.

We've met before.

Today at Support for Special Needs:

Excerpt: 

Those of us raising our kids in public school environments have a pretty good idea of what de minimis really looked like in its worst case scenarios. We’ve subsisted on the scraps that fall from the educational table. For the Supreme Court to now compel public schools to give our kids the opportunity to make meaningful, substantial and “appropriately ambitious” progress? That has to potential to change our lives and the futures of our kids. We’ll deal with the private school tuition issue later. (Private schools mostly don’t want our kids anyway. That’s a very ugly truth.)

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)

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.

The Persistence of Little Fish

Today at Support for Special Needs:

Excerpt: 

When I wrote about the little fish that quietly eat our kids up while we’re busy watching for sharks, I had no idea how many little fish were going to spawn in the coming years, or how sharp their teeth would become.

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.

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.

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.

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.

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.

"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.

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.

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.

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.

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.

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.