This Isn't a Little Girl

I've read a lot about Schuyler lately. Most of it is appreciated, some of it has been dead wrong, and a little of it has been unspeakably cruel. A lot of strangers who will never meet her have said the most amazing things on her behalf, and some people who claim to care about her have led the devil straight to her doorway. This is all the result of the attention I've brought to her, and by and large, this mostly encouraging attention has been for the positive. I confess that when I think about the public scrutiny I've brought to Schuyler's life, I stay up late some nights wondering if I've done right by her. But I still somehow manage to get some sleep.

Much like myself, I suppose, it's safe to say that neither the best nor the worst that has been said about Schuyler is accurate. Schuyler isn't an angel, nor is she a pathetic misfit. She's a developing human in transition. Lately I've been more and more aware that she's leaving her little girl life behind, to be replaced soon (if it hasn't begun already) by her time in this world as a young woman. In three months, she'll become a teenager. Many of the storms that await her are driven by her disability, but some of them will simply be a result of being a teenager, in a world where teenagers strive to be anything but different, even as they struggle to find their unique place in the world.

Today we had lunch with Schuyler, at her school. She's still struggling to find her place in her seventh grade tribe, although she's made some small steps in the right direction. For now, we go to her every Friday, to her mysterious delight. (Because seriously, if my parents had ever shown up at my school to eat lunch with me, I might have ended my life with the school-provided plastic cutlery.) We bring her a burrito bowl from Chipotle, along with one for her SpEd teacher, and for half an hour we live in her world.

As she sat and looked around, finding boys to tell us about, I took out my phone and snapped a few photos. It wasn't until later that I looked at them and realized that my phone has a feature I was unaware of. It apparently has a time machine app that allows me to glimpse into the future.

Because this isn't a little girl. This is a young woman, and a father's heartbreak.

Possibilities

Over at Support for Special Needs, I talk about a very interesting idea that was floated to us by one of Schuyler's teachers. It was honestly not one that would have occurred to either of us, not in a thousand years.

And yet, it might not be the most terrible idea ever. Perhaps.

They Walk Among Us!

Today's post at Support for Special Needs continues last week's Bigfoot/Yeti/Nessie theme (well, it was a theme in my head, anyway) as we explore the mythological creature commonly known, when he's known at all, as the Special Needs Dad.

I started off with a point, but really, by the end I was just sort of cracking myself up like an idiot. You might or might not be surprised at just how often that occurs in my life.

Words for Life

Today over at Support for Special Needs, I discuss what is essentially the AAC equivalent of the capture of Bigfoot AND the Yeti riding on the Loch Ness Monster. Yes, friends, PRC has released its Unity language system for the iPad. My early thoughts on this new app, the one we never thought we'd see.

A quick personal note: we are putting our plans for Chicago in a holding pattern for the time being. Note that I said a holding pattern. We're circling the airport patiently, not crashing into the side of a mountain. Assmonkeys and their sock puppets will chatter regardless. Well, what are you gonna' do?

The Return of the Short Bus

I've posted over at Support for Special Needs, about Schuyler's return to school. It's tricky because she may very well be changing schools in about two months, which obviously brings its own concerns. But for now, she's back, and while she has misgivings, she nonetheless leapt onto the bus this morning without hesitation, and without so much as a glance back.

I mean, a little separation anxiety wouldn't kill her, would it? Harsh, Schuyler. Very harsh.

One Week

It's Monday, and that must mean a new post over at Support for Special Needs. This is Schuyler's last week at home for the summer, before heading back to school. Well. I'll miss this time with her, as I do every fall.

Giving

There's a new post up at Support for Special Needs, a day late and perhaps a dollar short. You can judge that for yourself. The topic is what I can give to Schuyler. And what I can't.

deleted

If you think it's entertaining to say disgusting things (in anonymous email, of course) about people you don't actually know, I hope you'll consider limiting your targets to adults.

Post deleted. JHFC...

Just a Word: From the Mouths of our Public Servants Edition

I didn't want to write about this today. I didn't want to write about it at all, actually, but certainly not today. I've got another post coming up tomorrow that I most certainly do not want parked next to this delightful topic. And honestly, I'm tired of talking about it, this thing that doesn't seem to ever change, or ever get better.

But then, I'm not the person who thought it would be funny to use kids like mine as the punchline to a horrible joke, all in service of scoring political points and mocking the President of the United States.

Allegheny, PA County GOP chair Jim Roddey, at the election night party for state Rep. Randy Vulakovich, R-Shaler:

"There was a disappointment tonight. I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly -- he looked like he was sort of in distress. And I said, 'Sir, here's a place.' And he said, 'That's a handicapped space.' I said, 'Oh I'm so sorry, I saw that Obama sticker and I thought you were mentally retarded."

Well. There you go.

(I'll no doubt be able to add an update later, with a weaselly statement from Mr. Roddey's spokesperson expressing regret or possibly outrage that his words were taken out of context by the liberal media, and how he does love the little retards of the world so very much. I'll be sure to share it when it comes.)

This isn't about politics; it's just as reprehensible when the sentiment comes out of the mouths of people whose politics align more closely with my own. And this time, it isn't about a slip of the tongue, a casual careless remark, or a moment of poor judgment.

This was a joke. A premeditated joke, one that Jim Roddey planned to make. For all I know, it was written down on a little blue notecard for him. It's even possible that it was written for him, by one of his staff. Jim Roddey stood up, he took the microphone, and he very deliberately and unhesitatingly made a joke, one that I like to think that just about any decent human being would find repulsive.

But that's perhaps the worst part.

From the article: "The crowd hollered and clapped, and then Roddey went into the the usual thanks at political events for grassroots supporters of the winning candidate."

Not one person stood up and called him out on it. Not one person felt compelled to be a voice for basic humanity, for a bare minimal level of human decency. Gathered in a mob, the crowd roared its approval. It cheered and it laughed, and it demonstrated once again that those of us who love and advocate for friends and family with developmental disabilities have a lot of work to do.

And all our work? It might just be for nothing.

I wonder if Jim Roddey and his audience would have laughed if my child had been standing there in front of them. Or Sarah Palin's.

Or yours.

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INEVITABLE UPDATE, 8/8: Jim Roddey has apologized for his joke.

"I have a long record of supporting people with disabilities and should have remembered that before I spoke. My remarks were inappropriate and I apologize."

See? It's not that he doesn't care about people with developmental disabilities. It's simply that he forgot that he cares. Silly!

Apparently the members of the Allegheny County GOP forgot not to laugh, too.

Jim Roddey, Pennsylvania’s Allegheny County GOP Chair and swell guy.

info@rcac.net  Telephone: 412-458-0068
(Mr. Roddey's phone: 412-512-6747)
The Republican Committee of Allegheny County
100 Fleet Street, Suite 205
Pittsburgh, PA 15220

Letting go. Just a little.

I wrote about the challenge of trying to grant Schuyler a measure of independence over at Support for Special Needs this morning. I'm not all that good at letting go, but I do try.

Keep an eye out here for a special announcement in a few days, if all goes well. If you think you know what I'm going to tell you, the only thing I think I can say for sure is that you're wrong. I believe this might just be a near-universal surprise. And a complicated one at that.

A Time Travel Fantasy

There's a new post up at Support for Special Needs, in recognition of the nine year anniversary of Schuyler's polymicrogyria diagnosis. It has been an indescribable nine years, and a tremendous contrast between fear and reality.

First

My latest post at Support for Special Needs addresses People First Language. I've written about this before, and I'm not sure my feelings have changed about it very much, but a discussion I had online recently made me think it might be time to revisit the topic. So here you go.

In other news, it is entirely possible that someone in a managerial situation in the city of Chicago might be saying to themselves, "Say, I'd really like to hire that Rob fellow to come work for me in my Factory of Hopes and Dreams, if only I could meet him face to face and determine if I like the cut of his jib."

Well, good news. Both me and my jib will be visiting next week. Let's make it happen.

An Intervention

There's a new post up at Support for Special Needs. You will be perhaps ever so slightly unsurprised to hear that it involves the legal battle between the developers of the speech language app Speak for Yourself and the Prentke Romich Company.

Short version: We're getting involved, yo.

Running on Empty

On Facebook the other day, I made a statement in regards to the rapper 50 Cent and his ugly Tweets in which he used autism and special education as cheap insults.

I said:

"I love a good outrage as much as anyone, but honestly? If I were required by law to give two shits about what 50 Cent thinks, I'd have to borrow them both."

A few people took me to task for that, and they weren't wrong to do so. While I haven't exactly changed my position on this concerning the amount of outrage I have been able to muster about 50 Cent and his opinion about anything at all, I do try to at least address my lack of outrage and what that might mean about me at the moment.

You can go read about it on today's Support for Special Needs.

Buddy and the Way of Change

The way of the world is the way of change.

Just ask Buddy. If you can find him.

When we first moved to Plano almost seven years ago (it seems so strange to me to even say that, so impossible that we've been here that long), one of the first things we discovered was that living next to a duckpond and a city greenbelt meant a steady parade of interesting wildlife, like coyotes and a bobcat (named Bob, of course) and herons and even a snapping turtle that looked a little like something from Loch Ness. But our happiest discovery was a toad living just outside our apartment. We named him Buddy, for reasons that have long since escaped me.

Buddy would make a regular appearance right outside our door, and even in the beginning, he showed little fear. Being a twelve year-old boy at heart, I was never able to resist the urge to pick him up in those early years, and he expressed his displeasure in the way that all toads and frogs do. I believe they drink water all day just in case some manchild insists on picking them up.

But as the years passed, Buddy stopped peeing when I picked him up. He would simply hang there while I held him and showed him to Schuyler, who adored him from the beginning. He stood still while I took his photo. One night, I went outside and sat on the little stone wall next to our apartment and watched Buddy hunting for bugs. He had grown so accustomed to my presence by then that he went about his business without paying me any attention. I sat maybe two feet from him while he stalked his prey. As far as animal experiences go, it was pretty amazing.

Over the years, Buddy has remained a constant summertime companion. We watched him as he relocated from the wall to a gap next to a manhole cover about ten feet away, and we saw him take on a lady friend. A few weeks ago, I watched him eat a not-small gecko, which was a disturbing reminder that in the world of small animals, toads and frogs are actually relentless killers. I was amazed that Buddy had been with us for so long until I looked up toad lifespans and found that toads can live up to forty years. Can you imagine that?

And then, shortly after the gruesome gecko incident, Buddy disappeared. It has been weeks since I've seen him. Did he move away, following a shift in his food supply? Did his new chicky friend want a bigger place? Did one of the herons that lurk near the pond make a snack of him? Or even the snake whose shed skin we discovered in the grass last week? Did Buddy meet with tragedy, or did he simply ease on down the road?

The way of the world is the way of change. We say our goodbyes and we move on, and we do so with hearts that are heavy or with souls that are electrified with possibility, and we take pieces of all the homes and lives that we've led before. Those pieces become part of the complex tapestry of ourselves. Some are bittersweet and even tinged with regret, but they're all part of who we are, and who we are to become.

When we moved here, we did so powered by hope. Hope for this place, hope for Schuyler, hope that we'd found a place that could be home. And here's the thing. It was. Plano was a good fit for us for a long time before it soured. I don't regret moving here, not one bit. It was the right thing to do, and it saved Schuyler as much as any other choice we ever made.

Now that things have stagnated and now that Schuyler's future and whatever independence it might contain loom larger and more immediate, we could have stayed longer. Perhaps we should. And given the precarious job situation, perhaps we will be forced to do so a bit longer. But it's time to go. The way of the world, and the nature of change, is that it is rarely convenient. Change involves the breaking of things, not just building but rebuilding.

It's not easy. If it was, we'd all embrace change the way Schuyler does. She lives for change; she thrives on it in a way that runs counter to almost everything you've ever read about kids with disabilities. For Schuyler, their are no routines, only ruts. And so in her mind, the idea of moving to Chicago and starting at a new school and having new friends and expanding her family, it all makes perfect sense. She admitted to me again recently that she doesn't like her school now and doesn't have any real friends. If you're not a parent, I'm not sure I can explain to you how horrible and helpless that makes me feel. If you are, no explanation is required.

For Schuyler, change involves possibilities that are a little heartbreaking to me. She is eager to leave some things behind, and her ever-present optimism and belief in the future remains one of the more poignant aspects of her life to me. There's a lot that Chicago represents to us all, in ways that will become much more clear to everyone soon enough. We all have our personal as well as family reasons. But to Schuyler most of all, I think there's a persistent hope, possibly naive yet very real, that this time, she will find her place and her people.

I don't know what happened to Buddy, or if he'll return. If he does, one day in the hopefully imminent future I'll go pick him up one last time (from above, of course; pee on me once, shame on you...) and say goodbye to the only neighbor I ever really cared about. If Buddy has truly moved on, however, I can only say that I wish him well in his uncertain future. I wish the same for us all.

---

Update, 7/17: Buddy has returned! He let me pick him up last night without pissage, although he declined to have his photo taken. When I asked where he's been, he said he didn't want to talk about it. I'm guessing Vegas.

The Grownups

There's a new post up at Support for Special Needs, following my attendance at the 2012 AAC-RERC State of the Science Conference in Baltimore last week. Not a recap or anything that fancy, just an observation on one particular aspect of the conference.

One thing I didn't mention in my piece was the interesting observation that a number of representatives from the big assistive technology device makers were in attendance, which I appreciated very much. The discussions of the iPad and the consumer electronics in AAC tech couldn't have been a lot of fun for them. I was saddened and a little disappointed that PRC wasn't among the companies in attendance. I would have been interested in their input, and I'm going to say with confidence that they could have benefitted greatly from hearing what people had to say about the topic.

I don't feel like there's nearly enough active listening going on in the assisted speech industry at the moment, which is both ironic and a very great pity.

Extraordinary Measures

There's a new post up at Support for Special Needs. I'm actually not entirely sure what to say to describe this one. I quote an old torch song, "The greatest thing you'll ever learn is just to love and be loved in return." I think that quote might just sum it up nicely.

I'm still looking for a job in Chicago, by the way. You know, in case you were thinking of offering me one but didn't want to get lost in the crush of offers coming my way. Crush away. Seriously. Don't make me beg.

A Day Without Lawyers

There's a new post over at Support for Special Needs. More talk about the legal song and dance between the developers of Speak for Yourself and the Prentke Romich Company. The whole thing has grown exactly as frustrating and ridiculous as you might imagine. Honestly, I'd write more, but the topic is exhausting.

Beautiful Freak

You're such a beautiful freak

I wish there were more just like you

You're not like all of the others

Schuyler has always loved music, which is no surprise given that she's been surrounded by it from day one, and I've always sung to her. In recent years, we've sung to each other, in those moments we share alone. Schuyler and I spend a great deal of time together, particularly once she's out of school. She accompanies me to work most days, and in the long car ride, we sing, a lot.

The other day, we were singing an Eels song, which is hardly surprising to anyone who knows us. The music of Mark Oliver Everett has always been ours, Schuyler's and mine together, ever since she was a baby and I would sing My Beloved Monster and Me to her. It was fitting; she was my strange little monster, even before I knew why, and we really did go everywhere together, as we still do today. As she grew older, particularly in the dark days after her diagnosis, I would sing her to sleep with The Stars Shine in the Sky Tonight ("It's not where you're coming from / It's where you're going to / And I just wanna go with you…"), thinking of a future where she might have to go forward without me, or me without her.

But this week, it was a simpler, happier song, Beautiful Freak. Every time I sing it to her and point to her, she laughs, and the way she sings it back to me, in her strange tongue that so few in the world are privileged to hear and even fewer to understand, it makes my heart soar. We have so many nicknames for each other (her current favorite for me is "Daddy-O", which I adore beyond description), and few of them are gentle. Dummy. Butthead. Buggin. Space Monkey. Freak.

And that is why I love you

Beautiful freak, beautiful freak

That is why I love you

Beautiful freak, beautiful freak

"Daddy," she asks, "Am I a freak?"

I look at her face carefully, searching for anxiety. Is this a word she's heard before, from the lips of mean kids? But no, there's nothing there. She's smiling. She just wants to talk.

I want to say no, but it doesn't feel like the right answer.

"We're all freaks," I say. "Everyone in the world feels like a freak sometimes."

"Is it bad?" she asks.

"It's not bad," I say. "Sometimes people use that word to be mean, but it's only mean if you take it that way. Everyone is different, and you're more different than most, you know? That's why you're my beautiful freak."

Some people think you have a problem

But that problem lies only with them

Just 'cause you are not like the others

I've always maintained that the only things I could really promise Schuyler are love and the truth. And so I've never pretended that she's not different, or that her difference wouldn't be difficult to bear sometimes.

Schuyler knows she's different. And when we sing, when she's a beautiful freak and she's loved for it, she's okay with it. It's a hard life for her, and it's not going to necessarily get that much easier, but it's hers and she's making her peace with it.

And I think it's pretty clear that Schuyler has figured something out about her father, something that the song reaffirms but which she's probably known all along, longer than I've been aware, even.

She knows that my love for her runs even deeper because she's different. That her difference fuels my affection in a way that is impossible to understand or define.

Too good for this world

But I hope you will stay

And I'll be here to see

That you don't fade away

When Schuyler and I move through the world together, we do so in a way that is different from her other relationships. It's different even than those moments when anyone else is around. Schuyler gives her attention to others in a way that can be intense; I can only assume that there are a few restraining orders in her future. But when it's just the two of us, when no one else is there, we occupy a space that is ours and ours alone. Schuyler holds my hand when we drive. She claims one shoulder for her own and just holds on. We share food and we sing songs and we say snotty things about other drivers. We find vending machines and eat bad snacks. We count airplanes overhead, every day.

I frequently write about Schuyler as a child with a disability because that's the thing that we struggle with the most, and the thing that speaks to a larger community the most clearly. But it's important to understand that the experience isn't hard because of her. It's hard because of the world. It's hard because society requires her to fit, in a way that she doesn't do easily, and while I would love to change the world, that's not ever going to happen, not to the extent that it should.

I can't change THE world, but I can try to change hers, to build a space around her where she can exist on her own terms, at least enough to regroup and recharge before she goes back into the fray, back into a land of passing, of trying to fit, and of trying to hold her head up while a dumb world expects her to apologize for being a beautiful freak. I can try, for as long as it is within my power, to see that she doesn't fade away.

You're such a beautiful freak

I bet you are flying inside

Dart down and then go for cover

Schuyler needs to be enabled. She needs to be given tools to communicate, options for freedom, opportunities to love and be loved. Schuyler could be an amazing big sister to someone, and she is easily the very best friend that anyone could have if only they would ask her to be. Given the right environment, Schuyler will thrive. She will grow wings and she will fly away, far from the doubters and far from these who would limit her and diminish her value and her humanity with their lack of vision.

And far from me one day. I hope that she can, even as I hope she never does. For like every other dad since the beginning, it is the fate of this father's heart to be broken, in ways I could never see coming, and could never, even in my most selfish moments, ever deny my beloved monster.

And know that I

I love you

Beautiful freak, beautiful freak

The Future is its Own Kind of Monster

My latest post at Support for Special Needs discusses how the end of the school year means facing the future, and how for those of us with kids with disabilities, looking into that future can be pretty disconcerting.

In other news, Schuyler finally got her year-long dream over the weekend, which was to color her hair blue. Except it didn't turn out blue, not even close. She was disappointed (How many little girls dream of having hair that is gunmetal grey?), but it grew on her. I knew we were going to be okay when she looked at herself in the mirror, paused, and then said "I look evil!"