October 31, 2012

Ride of the Valkyrie

Halloween is Schuyler's favorite holiday. It's probably mine, too, even though I rarely dress up. (The infamous Year of the Chicken notwithstanding.) It's my favorite entirely because of the happiness it brings her. That may change as she gets older and becomes more aware of her otherness, and as she ages out of things like trick or treating. For now, we cling to Halloween, and look for ways to make it stay hers.

I can't say for certain why Schuyler loves Halloween so much. Probably for the obvious reasons. Free candy, running around with her oldest friend being weird in the street, staying up late, playing dress up, etc. I wonder sometimes if there's more to it, to the fact that on Halloween, Schuyler's weird disappears a little. When she becomes someone else, she lets go of who she is, of the circumstances in which she finds herself, even if just for a night.

Once she was old enough to choose her own costume, and after a few years of perhaps predictable fairy choices, Schuyler seems to have gravitated toward strong female characters, which of course makes me happy. The best was easily Amelia Earhart a few years ago, which she wore to the Texas Book Festival because my fancy pants authorness stepped all over her childhood. (Sorry.) And last year we had Medusa, of course.

This year, she had her big idea while we were watching the Met's production of Wagner's The Ring of the Nibelungen, because yes, I have somehow raised a little opera nerd. (Don't worry, she still balances it out with Lady Gaga and the like.) So this year, I give you Brunhilde, the most badass of the Valkyries.

(Unseen in the photo: the hidden pouch for her iPod and its "Brunhilde Mix", consisting of lots of Wagner and the audio from the Warner Bros. "What's Opera, Doc?" cartoon.)

"Oh Bwunhilde, you're so wove-wy..."


"Yes, I know it. I can't help it."

October 29, 2012

"I don't know."

In today's post at Support for Special Needs, I discuss Schuyler's frustration with her disability, a frustration for which she has no words, for which she has an incomplete understanding but a visceral need to express nonetheless.

As Schuyler gets older, she finds herself in greater need of the words, and the concepts behind them, to express how very very much she hates her monster, and the unfairness that it brings to her life.

When she was younger, Schuyler said it with a howl. She needs a new howl now, and she's working to find it.


October 23, 2012

Just a Word: Election Edition

It's election season in the United States. This is a very special time for the people of this country, an opportunity to come together to soberly and with much reflection choose the fellow citizens in whom we trust to lead our nation into an uncertain future.

It's a time to explore our differences, of course, but also to celebrate the process of peaceful transition, of the theory of democracy made real. In this season, it is possible to experience the essence of American citizenship and the dignity and majesty of our system of government, based as it is on the strength and goodness of community.

In that spirit of civil discourse, I give you the post-debate words of author, pundit and self-proclaimed patriot Ann Coulter.



Having gotten everyone's attention, she later doubled down. (Beautifully, she did so as a way of calling out the president for insensitivity.)



Charming.

Look. I've written about this in the past, about how some people use this word because they are ignorant, and others because it's good for an easy laugh. And I have never ever said that no one has the right to use it. I've never advocated banning a word, even if that was even possible. In a way, I'd almost rather prefer that the people who want to use it actually do so. It's a quick identifier, a kind of vocabulary profiling, a little red flag that tells me a lot about the person before I invest a great deal of time taking them seriously.

Also, as I've made clear before, I have been extremely guilty of using that word in the past. I didn't necessarily get smarter since then, but through my own life experience and through the extraordinary people I've met as a result of advocating for Schuyler, I think I might have become a little wiser. Certainly more sensitive, although like most people, I have a long way to go. Still, I freely acknowledge that when it comes to speaking out against using the "R word", I am very much Nixon going to China.

Where Ann Coulter is concerned, the first thing we must do is take ignorance off the table. As noted in a post on Sprocket Ink, Coulter graduated cum laude from Cornell with a B.A. in history, and received her J.D. from the University of Michigan Law School, where she edited the Michigan Law Review.

When she uses this word to insult the president and liberals, Ann Coulter is making a choice. It's a very calculated choice, too. She knows that people will be upset by her language, but more importantly, she knows exactly WHO will be upset. When contacted about her use of the so-called "R word" in her tweet yesterday, Coulter replied, "The only people who will be offended are too retarded to understand it."

Ann Coulter knows who will be upset, and she knows who will be thrilled. I've worked in a book store; I have a pretty good idea of the people who buy her books. Either way, she's playing to her audience.

And like every other public figure who has used this term loudly and proudly, Ann Coulter has spared not a single thought for those whom she hurts. People like my daughter aren't on her scope. People like my family don't matter. Human beings with developmental disabilities have so very little political power, and fight so hard for what scraps they have. Are they even human beings at all? Don't ask Ann Coulter.

For those with developmental disabilities who can stand up for themselves, and for those of us who care for and love and most of all strive to protect and build a better world for those whom the likes of Ann Coulter would reduce to a vicious punchline, the fight falls at our feet. Not to stop people like Coulter from expressing their opinions. Not to silence them. As I said, if anything, I prefer that they stand in the light when they make these statements. Given the choice of knowing that there are roaches skittering around my kitchen at night (note: I'm being metaphorical; we don't have roaches, knock on wood) or turning on the light, I'll reach for the light every time. Even if some of the roaches, like Coulter, crave that light.

If Liberals excuse her remarks because we think she's a buffoon who is clearly desperate for attention, we become complicit. If Conservatives distance themselves from her and say "Well, she doesn't speak for me, so I have no duty to rebuke her," they are also complicit, because it's not a political issue. It might be a little different if she were abusing communities with any power or any privilege, groups that could push back.

But Coulter knows that the disability community is a safe target. No, scratch that. Not even a target. Just a punchline. A target would imply that there was some political gain to be had in hurting people like my daughter, like her friends and her family and her community.

As it is, there's not even that. They're just retards, right?

Right?

As citizens of the world and children of God, we have a choice to make, and it needs to be every bit as deliberate and considered as Coulter's choice to use that word the way she does. We have a choice to make every time we read a comment like hers made by a public figure, of course. Whether it's a notable Republican like Ann Coulter or a Democrat like Chicago Mayor Rahm Emanuel, we have to hold them accountable.

But more than that, we have a choice to make every time we hear a stranger at the mall use it, or a friend, a family member or a coworker. It is in those moments most of all that we make choices, sometimes hard ones. When we choose silence, when we choose not to make waves or risk looking like humorless scolds, we make a choice. We choose the side of the Ann Coulters of the world.

We choose the dark. When we're silent in opposition, we choose the dark, and we do so knowing perfectly well that we have a flashlight in our pocket, and we choose not to use it.

I remember a line from that famous Howard Beale scene from Network:

"All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"

I guess what I'm trying to say is yeah, I'm as mad as hell. And I'm not going to take this anymore. And neither should you.

October 22, 2012

Watching


Today's post at Support for Special Needs confronts an issue born out of Schuyler's newfound communications independence.

We have the opportunity to invade our daughter's privacy electronically. We feel weird and wrong doing it. And we do it anyway.

I don't feel particularly right on this particular issue. I might even feel mostly wrong. But I also feel bound to continue making what feels much like the wrong choice, yet also the clear one.

October 15, 2012

Resolution

Today's post over at Support for Special Needs is a short one, just a brief followup (and hopefully a resolution) to the ongoing legal tussle between Speak for Yourself and the Prentke Romich Company. Here's hoping this is the very last time I'll ever write about this ever. Dream a little dream.

October 8, 2012

Portrait of a Real Girl

My latest post at Support for Special Needs discusses a little exchange I had on Twitter last week, ostensibly about Schuyler's school photo. The conversation was a doozy, and mostly ended in kookery, which is hardly a surprise at this point.

Still, it brought up a larger point, about how kids like Schuyler are typically a lot more complex and self-determined than some people give them credit for. They are, dare I say it, actual people?

NOTE: This is NOT her school photo. Which is kind of too bad.

October 1, 2012

Sometimes He Does

It's Monday, so of course that means there's a new post at Support for Special Needs.

There's a saying that special needs parents hear a lot, rivaling the Holland Thing for frequency of appearance in our inbox. "God never gives you more than you can handle."

But through experience and observation of our families and others like them, we know better. Sometimes he does.

September 21, 2012

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.


September 17, 2012

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.




September 10, 2012

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.

September 4, 2012

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?




August 27, 2012

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.


August 20, 2012

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.


August 14, 2012

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.

August 9, 2012

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...

August 8, 2012

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.

-----

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

August 6, 2012

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.

July 30, 2012

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.


July 23, 2012

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.


July 16, 2012

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.