November 26, 2012

It's Complicated

This morning over at Support for Special Needs, I discuss the complicated nature of my relationship with Schuyler, which is no doubt both completely unlike any other in the world and at the same time identical to any family with a disability. We're all navigating varying degree of happy and sad. It's complicated for us all.

By the way, speaking of complicated, today is my birthday. Actually, it's not all that complicated at all. I'm forty-five. Forty-five human years. That's youthful for a tortoise, or a tree. It's not feeling all that young to me. It beats the alternative, as they say, but still. Forty-five feels like it falls squarely between kind of awful and frankly surprising.

On the other hand, I might get a chinchilla for my birthday, so you know how it goes. "Strikes and gutters, ups and downs," as the Dude says. I abide, too.


November 19, 2012

Broken Thanks

This week at Support for Special Needs, I do something so clichéd in the world of bloggery that I'd might as well be posting pictures of my cat (if I had one) or making little graphics with variations on "...said no one ever" or snotty Willy Wonka.

That's right. It's a Thanksgiving, "what I'm thankful for" post. I'm not too sure how much of it is specific to parents or families of disability, other than it feels like we look a little harder for the bright spots, and are more fully and desperately sustained by the ones we find.

I'm not sure if I'll post again this week. You never know with me, do you? If I don't return before Thursday, I'd like to wish all my American readers the very happiest of Thanksgivings. As for the rest of you, have a swell Thursday.

Next Monday is my birthday. Warning: it's kind of a bad one. Here's hoping I make it to then. I'm not counting those chickens before they hatch. They are not in fact spring chickens, after all.

Note: This is not a chicken, spring or otherwise.

November 15, 2012

Movember monster face

Yes, it's November, which means that for the second year in a row, I'm growing a sad little creature on my lip in the cause of promoting men's health (my own sickly facial hair notwithstanding) for Movember.

This year's timing couldn't be more challenging, with the very real need for charitable donation for the victims of Hurricane Sandy. (I've said it time and time again, but killer storms really do need more badass names, like Vladimir or Spike.) As a result, I'm not surprised or disappointed by the lack of Movember donations this year. Still, it's a good cause and I hoping to make a little difference as the rest of the month presses on.

To that end, I wrote a brief little guest post for the folks over at Totsy regarding my own reasons for getting involved in the Movember project. I'm grateful to them for asking for my input.

I realized this year what I was shooting for with my own facial atrocity. I'm not looking for some big Joseph Stalin, Magnum P.I., Sam Elliott level moustache. I'll settle for the Principal Rooney. Save Ferris!

November 12, 2012

The Teachable Moment

Today at Support for Special Needs, I discuss what is probably my worst skill as a special needs parent and advocate: the ability to transcend "Caveman Dad" mode and embrace the teachable moment.

Jesus Howard Christ, am I terrible at the teachable moment. In that situation, I achieve near perfection as a cautionary tale. (Good news: THAT is probably my greatest strength. Well, someone's got to do it.)

Caveman Dad procures a rug, which will really tie the cave together.

November 7, 2012

"Hope is that stubborn thing inside us..."

"I have never been more hopeful about America. And I ask you to sustain that hope. I'm not talking about blind optimism, the kind of hope that just ignores the enormity of the tasks ahead or the roadblocks that stand in our path. I'm not talking about the wishful idealism that allows us to just sit on the sidelines or shirk from a fight.

"I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting.

"America, I believe we can build on the progress we've made and continue to fight for new jobs and new opportunity and new security for the middle class. I believe we can keep the promise of our founders, the idea that if you're willing to work hard, it doesn't matter who you are or where you come from or what you look like or where you love. It doesn't matter whether you're black or white or Hispanic or Asian or Native American or young or old or rich or poor, able, disabled, gay or straight, you can make it here in America if you're willing to try.

"I believe we can seize this future together because we are not as divided as our politics suggests. We're not as cynical as the pundits believe. We are greater than the sum of our individual ambitions, and we remain more than a collection of red states and blue states. We are and forever will be the United States of America."


President Barack Obama
November 6, 2012



November 5, 2012

Glitch

Today at Support for Special Needs, we meet Vanellope von Schweetz, a character from the new Disney animated feature Wreck It Ralph and the most recent fictional character with whom Schuyler found herself strongly identifying. Vanellope joins the club along with Ariel the mermaid, Nemo, Tinker Bell, Pinocchio, and Scout Finch (or perhaps Boo Radley, if we're really being honest here).

If you're a big baby about SPOILERS, even in a kid's movie like Wreck It Ralph, two things:

First of all, this post is, by necessity, one big spoiler, so consider yourself warned.

Secondly, get a grip.

Photo credit: Disney

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.