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.

Lulu

Today we said goodbye to a member of our family. Today, we lost sweet, sweet Lulu.

She joined our little family fourteen years ago, at a difficult time for us. In the fateful summer of 2003, in the quest to discover the reason for her wordlessness, Schuyler underwent a very traumatic MRI, one where she had to be anesthetized through an IV in the back of her hand. It was awful, and it left us all feeling exhausted and emotionally drained. “You know what?” I said a day or two later. “We’re going to get a motherfucking puppy!”

And that’s how Lulu came to join us.

She was the smallest in her litter, the only black pug in the bunch. She was scrappy, but she had the buggiest eyes and the smushiest face. She was the pug-iest pug in the litter, and had the sweetest disposition. I knew as soon as I saw her that she was the dog for me.

And she always was.

Lulu travelled the streets of New Haven, Connecticut with little Schuyler in her Radio Flyer wagon, and then moved with us to Austin and later to Plano. She watched Schuyler grow from a toddler to a young woman. Lulu bonded deeply with our late Boston terrier Petey, even having a litter of ridiculously cute and rowdy puppies with him about ten years ago, and she endured the addition of Max and his wild shenanigans. A few weeks ago, when we brought our new puppy home, she patiently endured Oscar’s puppy antics, too. She was subjected to endless nicknames, from Samurai Housefly to George Squashington to Fatbug to The Smash. One Halloween, she let us dress her like the Devil with no complaint. Lulu was patient, and she was game for anything. For fourteen years, she has been a constant companion, snorting and farting her gentle way through our lives.

A few days ago, she stopped eating. She also became incontinent and lethargic. When we took her to the vet this morning, we were looking for an answer, a way to restore her to her tail-wagging, happy self. (When Lulu was especially pleased with something, she let one fang stick out of her little sea monster mouth.) We didn’t think we would be leaving without a dog.

The vet gave us some options, expensive surgery that might make sense for a younger dog. But when he gently suggested that this option, and its long recovery, might “buy a little more time”, we knew what he meant. It would buy US more time. Months of pain and discomfort for Lulu, so that we could have more time with her. Our quality of life, not hers. In the end, it was an incredibly difficult choice, and at the same time, a really clear one. Letting her go was the right thing to do.

And yet, all day I’ve felt an unreasonable, impossible impulse. I want to go back to the vet, to hand them our receipt and tell them that I’ve changed my mind, that I’m selfish and cruel but I want more time, one more day even. I want to undo this thing we all did.

I want my dog back. I want my dear friend.

(As we sat waiting for the vet this morning, I took what ended up being my last photo of Lulu. I'm glad I did. For all her pain, she looked like her old self in the moment. She looked at me with love, and, I desperately hope, with forgiveness.)

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.)

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.

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.

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.

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.

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.

I see you. I see what you’re doing.

Today at Support for Special Needs:

Excerpt: 

We push back against ableist speech, over and over again, because we hope, against all the evidence to the contrary, that things might get better. And they did just a little, for a while, I think. And then a candidate for the presidency made fun of a reporter with a disability, and the citizens of this country saw the video of his grotesque behavior and decided that yeah, that’s our guy. And while that at least gave us a platform for advocating for disability rights, particularly at the Democratic National Convention, it also gave people license to say and do terrible things about and to our loved ones. So in the balance, things probably don’t change all that much after all.

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.