December 31, 2012

Forward

Today at Support for Special Needs, I discuss the passing from the old year to the new, and what that means for families like ours. This being New Year's Eve and all, I can't imagine that's a surprise topic. I don't know, an Arbor Day post didn't seem appropriate.

To everyone reading me, wherever you are, I hope you have a wonderful 2013. See you there!


December 24, 2012

Christmas Eve on the Island of Misfit Toys

Today at Support for Special Needs, a few words on Christmas Eve.

I hope everyone reading this has a safe and joyous and transformative holiday week. If you're a friend, I hope you remain so forever. If you're a reader, I hope you continue to find value in my work. And if you're an... other, well, I don't know. I hope your heart grows three sizes this day, I guess.

No matter who you are, I wish you peace and happiness.


December 21, 2012

"Such a light such dark did span..."

The other day, for a post honoring the victims of the Newtown shooting, I quoted some lines by an anonymous poet, one that I knew from a magnificent piece of Christmas music, Hodie by Ralph Vaughan Williams. The poem comes from a heartachingly beautiful chorus near the end, and when I went back and listened to it, I realized that I kind of wanted to quote the second verse, too.

No sad thought his soul affright;
Sleep it is that maketh night;
Let no murmur nor rude wind
To his slumbers prove unkind;
But a quire of angels make
His dreams of heaven, and let him wake
To as many joys as can
In this world befall a man.

Promise fills the sky with light,
Stars and angels dance in flight;
Joy of heaven shall now unbind
Chains of evil from mankind,
Love and joy their power shall break,
And for a new born prince’s sake;
Never since the world began
Such a light such dark did span.

I've written about how the holidays can be complicated for an agnostic family living in an overwhelmingly Christian society; I feel I write about it every year, actually. Not just for the obvious reasons, but also for the pangs of envy that come from watching others receive comfort and warmth from something that has meaning to them. I don't imagine the Rummel-Hudsons will ever become Christians, and certainly not just so we'll have a nicer time at Christmas. The challenge for us comes from searching for meaning in the world that we DO believe in, a world based not on the divinity of Christ and the community of believers, but on other things, smaller things, perhaps. Sometimes as small as a child.

Even for a non-Christian, there is still something powerful about the image of a newborn child during the holidays. It sounds treacly, bordering on cliché, but children really are promise, and in believing in the promise of a child, we find ourselves renewed. For me, from the shabby, sometimes wrecked perspective of middle age, that sense of renewal becomes especially important. When I went back and listened to the music that inspired that quote, I found myself catching my breath at the line declaring that this promise and this joy would break the chains of evil from mankind. The text is referencing the birth of a particular child, of course. And yet, it's important to remember, always remember, that no matter how happy and bright and shining our Christmas celebrations may aspire to be, there's always the end of that story to look forward to. In every Christmas, there is some Easter waiting.

In our simple joy, there is bittersweet sacrifice waiting.

This season feels different from holidays past. It seems harder somehow. In a larger sense, there's no mystery why, and I suspect that there are a great many homes feeling this. Newtown has darkened the holidays in a way that's not easily shaken off. It's too big; no amount of merry thoughts can dispel the mental images we've been trying to push out of our heads, or the heartbreak we've felt, over and over, unrelenting, as we meet the families and learn more about those who have been lost to us. How do we break those chains?

Even so, in the months before Newtown, the world had felt grey to me. The internet had seemed meaner, the real world conversations more terse. And Schuyler was facing the same things on a younger but hardly smaller scale, from girls her age who had already discovered the easy thrill of ostracization. She did so while stubbornly fighting her own unwinnable battle, the one where she believed that if she just tried hard enough, no one would care about her disability or even notice it. Before the world darkened at Newtown, it was already feeling like a stonier place than before.

I wish I had a "But then..." to go to, where I could share something that changed that, made it all better somehow, but I don't. I can only say that I haven't stopped looking for the light. I guess I feel I owe it to her not to miss it if it's there. My agnosticism is nothing like atheism. I haven't closed myself off to the promise latent in this universe to surprise or to elevate.

I don't believe in a holy Christ child, but I do believe in the possibilities of our young ones. I don't believe that Jesus will bring us salvation, but I haven't ruled out the possibility that we might be saved just the same.


Thirteen

The day before yesterday, or so it seems to me now, I met an extraordinary little person...


December 17, 2012

"No sad thought his soul affright…"

Today's post at Support for Special Needs is a simple one, mostly paying honor to those who died in Newtown, Connecticut on Friday. I thought about writing about something else, but ultimately I felt like it wasn't time to move forward just yet. Soon, it will be. Not too soon, I hope.

I also wanted to share some of President Obama's remarks from the memorial service last night. Mostly, I wanted them here, noted, remembered, so that down the road, as the horror dims and we become tempted to accept the unacceptable again, we'll be reminded that for a moment, maybe just a fleeting moment, we knew better.




Excerpt from President Obama’s speech at prayer vigil for Newtown shooting victims

December 16, 2012
Newtown, Connecticut


But we as a nation, we are left with some hard questions. You know, someone once described the joy and anxiety of parenthood as the equivalent of having your heart outside of your body all the time, walking around.

With their very first cry, this most precious, vital part of ourselves, our child, is suddenly exposed to the world, to possible mishap or malice, and every parent knows there’s nothing we will not do to shield our children from harm. And yet we also know that with that child’s very first step and each step after that, they are separating from us, that we won’t -- that we can’t always be there for them.

They will suffer sickness and setbacks and broken hearts and disappointments, and we learn that our most important job is to give them what they need to become self-reliant and capable and resilient, ready to face the world without fear. And we know we can’t do this by ourselves.

It comes as a shock at a certain point where you realize no matter how much you love these kids, you can’t do it by yourself, that this job of keeping our children safe and teaching them well is something we can only do together, with the help of friends and neighbors, the help of a community and the help of a nation.

And in that way we come to realize that we bear responsibility for every child, because we’re counting on everybody else to help look after ours, that we’re all parents, that they are all our children.

This is our first task, caring for our children. It’s our first job. If we don’t get that right, we don’t get anything right. That’s how, as a society, we will be judged.

And by that measure, can we truly say, as a nation, that we’re meeting our obligations?

Can we honestly say that we’re doing enough to keep our children, all of them, safe from harm?

Can we claim, as a nation, that we’re all together there, letting them know they are loved and teaching them to love in return?

Can we say that we’re truly doing enough to give all the children of this country the chance they deserve to live out their lives in happiness and with purpose?

I’ve been reflecting on this the last few days, and if we’re honest with ourselves, the answer’s no. We’re not doing enough. And we will have to change. Since I’ve been president, this is the fourth time we have come together to comfort a grieving community torn apart by mass shootings, fourth time we’ve hugged survivors, the fourth time we’ve consoled the families of victims.

And in between, there have been an endless series of deadly shootings across the country, almost daily reports of victims, many of them children, in small towns and in big cities all across America, victims whose -- much of the time their only fault was being at the wrong place at the wrong time.

We can’t tolerate this anymore. These tragedies must end. And to end them, we must change.

We will be told that the causes of such violence are complex, and that is true. No single law, no set of laws can eliminate evil from the world or prevent every senseless act of violence in our society, but that can’t be an excuse for inaction. Surely we can do better than this.

If there’s even one step we can take to save another child or another parent or another town from the grief that’s visited Tucson and Aurora and Oak Creek and Newtown and communities from Columbine to Blacksburg before that, then surely we have an obligation to try.

In the coming weeks, I’ll use whatever power this office holds to engage my fellow citizens, from law enforcement, to mental health professionals, to parents and educators, in an effort aimed at preventing more tragedies like this, because what choice do we have? We can’t accept events like this as routine.

Are we really prepared to say that we’re powerless in the face of such carnage, that the politics are too hard?

Are we prepared to say that such violence visited on our children year after year after year is somehow the price of our freedom?

You know, all the world’s religions, so many of them represented here today, start with a simple question.

Why are we here? What gives our life meaning? What gives our acts purpose?

We know our time on this Earth is fleeting. We know that we will each have our share of pleasure and pain, that even after we chase after some earthly goal, whether it’s wealth or power or fame or just simple comfort, we will, in some fashion, fall short of what we had hoped. We know that, no matter how good our intentions, we’ll all stumble sometimes in some way.

We’ll make mistakes, we’ll experience hardships and even when we’re trying to do the right thing, we know that much of our time will be spent groping through the darkness, so often unable to discern God’s heavenly plans.

There’s only one thing we can be sure of, and that is the love that we have for our children, for our families, for each other. The warmth of a small child’s embrace, that is true.

The memories we have of them, the joy that they bring, the wonder we see through their eyes, that fierce and boundless love we feel for them, a love that takes us out of ourselves and binds us to something larger, we know that’s what matters.

We know we’re always doing right when we’re taking care of them, when we’re teaching them well, when we’re showing acts of kindness. We don’t go wrong when we do that.

That’s what we can be sure of, and that’s what you, the people of Newtown, have reminded us. That’s how you’ve inspired us. You remind us what matters. And that’s what should drive us forward in everything we do for as long as God sees fit to keep us on this Earth.

December 16, 2012

Unnecessary Evil

Okay, it's been a couple of days. Let's talk about guns.

First of all, I've got what borders on a shameful confession to make. My own opposition to gun ownership has become a little fuzzy over the years. I think in large part, that might just be pragmatism. Guns are a reality in this country, to the point that perhaps it is a little foolish to stand on principle in deciding not to have one, even if that means being that last unarmed citizen standing. I do still stand on that principle, primarily because I have a kid in the house, and I've seen that story on the news too many times to believe that I'm the one guy who will somehow keep his kid from shooting herself when no one's around.

But I also get why people feel the need to have a gun. Take my Liberal card away if you must, but I really do.

A few years ago, someone on the highway threw something huge and heavy, perhaps a brick, at my car, hitting it just above the doorframe on the driver's side back seat where Schuyler was sitting. It left a sizable dent; two or three inches lower and it would have gone through the glass and hit Schuyler. I never knew what I did to deserve that. Who knows? Does it matter? All I know is that I felt threatened, truly threatened, and when I got home, I found myself researching handguns online.

I found one that I thought would be perfect, too. It was a small caliber revolver, nothing crazy. I chose a revolver because it was small and less likely to jam, and because its hammer action made it much less likely to misfire if my hands were shaking in a crisis, which I can guarantee they would be. Of all the self-protection options I explored in the previously unexplored world of firearms, it seemed the least likely to end badly.

I didn't buy it. I spoke to a member of my family and was immediately told that no, I needed to get a 9mm semi-automatic weapon, because of the increased lethality and the ability to fire quickly and repeatedly. I needed to pack some real heat. That was what it took to snap me out of my new gun fever. I imagining Schuyler getting hold of this thing, and suddenly my fear of Very Bad People was dwarfed by my fear of the Very Worst Thought Imaginable. I deleted the link to my handgun of choice and I put our big aluminum softball bat next to the front door. And that was that.

But I thought about it. I seriously considered it.

And now, in the wake of the Newtown shooting, I'm left, as we all are, with some serious questions, and some harsh realities. What do we do about this increasingly dangerous world that we, and more importantly our children, find ourselves? And do we as a society need to exercise a right that may or may not be Constitutional to own military-grade weapons that are designed for one purpose only: to kill a great number of people in a very short period of time?

The debate over gun ownership isn't as black and white as the gun lobby would make it seem. If we accept that there are probably three reasonable reasons to own a gun -- home protection, personal safety and for sport/hunting -- then we have to decide where assault weapons and deadly, rapid-fire ammunition fit.

Conventional wisdom says that a shotgun may be the most effective gun for home defense. It's extremely effective at close range (ie. your house), requires no accuracy so you're unlikely to miss your target, and the sound of the gun being cocked is unmistakable and likely to scare off whoever is trying to steal your tv without firing a shot. If you feel that protecting your home requires an assault weapon or something that can fire off multiple rounds quickly, you might want to consider moving.

As I mentioned before, a revolver is the gun most recommended for personal safety. Unless you're living in a video game, it will almost certainly provide you with enough shots to defend yourself against an assailant, and its hammer action makes it less likely that you will accidentally shoot off your own foot, or that your kids will accidentally hurt themselves with it.

If you're a hunter and you need to bring down your target in a hail of rapidly fired lethal rounds designed for military combat, you might be missing the "sportsman" part of the deal. Unless you are targeting bears wearing body armor, you might also be overestimating your prey.

So we come back to the question of the kinds of weapons that are being used in incidents like Newtown. What is their place in our society? What does the Constitution really have to say about them? Do we have a legal right to sell and own semi-automatic weapons and rapid-fire ammunition? Should we?

Today, two days after Newtown, I feel like the answer is becoming more clear. If the reports coming out of Newtown are accurate, the shooter got off over a hundred rounds in a very short period of time. According to a medical examiner, those children were shot multiple times, from three to eleven times EACH, with a weapon described as "the civilian model of a military weapon used by military and police organizations in over 60 nations around the world". (Does that phrase even make sense? The civilian model?) If the information from Newtown turns out to be true, then twenty-six innocent civilians, most of them six and seven year-old children, were killed by multiple wounds inflicted by the same bullets used by troops in Afghanistan.

There's a lot to talk about in the wake of these shootings, and I think an equally important topic is the state of mental health treatment in this country. It's a subject that I very much hope gets discussion, and much needed action. But the fact remains that if the Newtown shooter had come into that school with a shotgun, or a revolver, or a hunting rifle, or for that matter a knife or a hunting bow or a hammer, we would be facing a very different level of horror, and having a very different conversation.

If you're reading this, I grant that you are unlikely to be one of the citizens who feels a right and a need to easily purchase and own these weapons, or ones just like them, or things like high-capacity gun magazines that allow shooters to fire off multiple rounds in quick succession. But if you are, let me ask you. Why? Do you feel the need to be armed and equipped to fight in a military combat situation? Do you like owning the same weapons that you see in your video games? Is it about feeling safe, or feeling cool?

Because nothing's free. Your right to own weapons designed to kill a lot of people very quickly isn't one that has been handed to you by two hundred year-old frontiersmen with muskets. It's one that has been paid for, and dearly. It's a right that has turned our public places into crime scenes that look like war zones. It has turned our teachers into first responders. Your fight for personal freedom has enlisted our children as unwilling warriors. Warriors, and martyrs.

But I have another shameful confession. I think it's probably too late. If you're all about having these weapons remain cheap and easy to get in this country, I don't really think you've got to do anything at all. You've already won. I don't actually think we are going to meaningfully address this problem. We can try, and I hope we do, but those weapons are out there. You can't solve clean air problems by stuffing the black clouds back into factory smokestacks. We can't unfrack the earth. And we can't take away all the military grade weapons that are now in the hands of, well, whomever. We don't really know, do we? We hear a lot from those who loudly proclaim that the Liberals want to take away their guns (and they're kind of right, when they're talking about those specific weapons of mass killing), and we certainly know where they stand on the issue. Cold dead hands, etc.

But then there are the quiet ones. The wounded ones, the angry ones, the lost ones, the forgotten ones. The ones we don't think about or worry about or try to help, not until we see them on CNN. Their unbalanced rage and impulse to hurt or kill isn't something new, nor is it specifically American. But while we can continue to choose not to help them or care about them or even think about them, we might try not to arm them quite so effectively.

But I'm not sure we can now. And I'm not sure we have the will to try.

I'm not here to call anyone to action, not directly. I'm not going to tell you what to say when you write your representatives. I know what I said when I wrote my own, including my new Tea Party-affiliated Senator-elect, but if you have any idea about the state and the county in which I live, you'll know that my messages were very likely dumped directly into a "left wing loony" file. I certainly can't tell you what to say, or what's the most effective way to affect change. I'm a writer, so I write. Whatever it is that you do is what you're going to do, I guess.

But I hope you're thinking about this, and I hope your horror doesn't fade. When enough of us decide that we're going to take the mental health of our citizens seriously, and when we decide that the right to own cool guns is being paid for with our most precious blood, then perhaps something will happen. I have my doubts, and they are extreme, but I'd love to be wrong.

December 14, 2012

Sometimes They Win

"Monsters are real, and ghosts are real too. They live inside us, and sometimes, they win." ― Stephen King

HARTFORD COURANT
Years from now, looking back on this blog post, will it be enough simply to refer to the events in Newtown, Connecticut for the reader to know what I'm talking about? WIll it become shorthand, like Columbine? Or will we as a society have become so numb to these kinds of events that they become a grey blur in our memories? One more helicopter angle looking down on a deserted school, one more scene with cops walking in and out of a building that could very easily be my own daughter's school, except for the police tape.

If you're reading this in the future and don't remember what happened today in Newtown, Connecticut, I hope you'll Google it. All those people who died, the teachers and all those children, they deserve to be remembered. They deserve more, they deserve to have their deaths matter, for action to have been spurred to move rusty wheels of change, for a school full of little bodies that still lay where they fell tonight while investigators try to figure out who they are, for all of this to somehow mean something.

If you're reading this in the remote future, did it matter? Did things change?

I can vividly remember after Columbine, the early cries (much of it from the gun lobby) of "It's too soon" and "This isn't the right time to have that discussion." That was so long ago; for perspective, Julie was pregnant with Schuyler but we didn't even know it yet. It was before the Y2K scare, before the contentious Bush/Gore election when we lost faith in our political system, and before 9/11 when we lost our faith in humanity. April of 1999 feels like another world, another lifetime ago, but Columbine? That feels immediate. It feels like it was just yesterday.

Or just this morning.

It feels immediate because some things have changed very little in this country. We as a society keep putting this discussion off for another day. Talking about this right now feels horrific. I get that. I really do. So we wait until we feel a little better and it doesn't seem quite as daunting or as horrible. All those little kids are buried, and we have our holidays, and then a new season of Dancing With The Stars comes on. We see something shiny and pretty, or something new pisses us off, and we move on.

Columbine took place almost fourteen years ago. FOURTEEN YEARS. And the worst part is, thirteen innocent people killed suddenly doesn't sound so impressive, not after Virginia Tech and Aurora and Gabby Giffords, and not after today. We're becoming harder to shock, and harder to inspire to action. We don't want to feel bad, and we don't want to pile conflict on top of our grief. So we pretend that there are two sides to this issue, and we punt.

Are there two sides? I don't know. I do know that if there are sides, one of them has dead children, perishing in public schools very much like the one my daughter attends. I'm just not sure we can pretend that this is a political issue anymore, or that there's truly an "appropriate" time to have this discussion. I suspect there are a great many families in Connecticut tonight who are wishing that we as a society had figured this out a long time ago.

I didn't bring up the events in Connecticut over our regular Friday lunch with Schuyler, mostly because I'd just found out the extent of the tragedy maybe five minutes before, and no one at her school seemed to have heard anything yet. I didn't want to send her off to class scaring the shit out of everyone like some little doomsaying Cassandra. And I didn't want to wreck her day.

After she got home, Schuyler knew immediately something was up. ("Daddy-O, you're hugging my guts out!") So we talked about it, and I did the best I could. She was scared, "a little", and she had lots of questions. I answered them as best as I could, and I tried to be honest with her.

But when she asked if it was going to happen at her school, I told her no. Not probably not, but simply no, there was no question about it, it will never happen at her school. So I did lie. I professed a certainty that I can never actually back up. And I think maybe she knew that, since we went on to talk about what she should do if something like this DOES ever take place. It's complicated, and I feel like I stumbled a bit without actually fumbling. I suppose just this once, I can stomach the pretty lie, so long as she knows what to do if faced with an unlikely but hideous truth.

After talking about it, we went to see a movie. We'd been talking about going to see The Hobbit for months, and we got wonderfully, perfectly lost in it. The timing couldn't be better. When the two of us got back to the car, I was already looking at my phone, re-entering a world that has such a thing as Newtown, Connecticut's heartbreak in it. Schuyler was still absorbed with the movie. She wanted to talk about trolls and dragons.

"Do you believe monsters are real?" she asked me, with total innocence and entirely in reference to the movie we'd just seen.

I paused, putting my phone down for a moment.

"Yeah," I answered. "I really do."

Well. I didn't know what else to say.

December 12, 2012

The Unbroken

There is a brokenness
Out of which comes the unbroken,
A shatteredness out
Of which blooms the unshatterable,
There is a sorrow
Beyond all grief which leads to joy
And a fragility
Out of whose depths emerges strength.
There is a hollow space
Too vast for words
Through which we pass with each loss,
Out of darkness
We are sanctioned into being.
There is a cry deeper than all sound
Whose serrated edges cut the heart
As we break open
To the place inside which is unbreakable
And whole, While learning to sing.

- Rashani Réa (1991)


December 11, 2012

Hope is the thing with feathers and claws

Schuyler and I had a hard conversation tonight. It was an important one, and I'm not sure I got it wrong, exactly. But it was difficult for certain.

The day began with a parent/teacher conference, with Schuyler's history teacher. She'd shown a big grade point drop on her last report card that concerned us enough to meet with him and talk strategies and such. The meeting went really well, but an interesting and disheartening fact came up during our discussion. In talking about how she uses her iPad in class, he revealed that not only did she never use her AAC apps in class, but he wasn't even aware that they existed.

Schuyler's social anxieties about using assistive technology to communicate are as present as ever. They might just be reaching a critical point, which is so frustrating because she started off so strong and so enthusiastic about using it. Once she got to middle school, she became increasingly self-conscious about using it, and it has been a struggle to get her to do so ever since.

Schuyler doesn't truly believe that others can't understand her verbal speech. Those of us who live with her and love her manage to understand her pretty well, and perhaps it's been a mistake to coast on that comfort level. If her mother and father and godparents and family friends can understand her without her device, then the rest of the world should be able to as well.

But they don't, and as she has used her AAC less and less, her speech has become harder to understand. And the more difficulty the people around her have in understanding her, the more frustrated she gets, until she shuts down. It's a negative cycle that feeds on itself. And it's a cycle that we desperately need to break.

Her history teacher said he would ask her to show him the two apps she alternates between in class, and later I received an email from him. He reported that she seemed happy and excited to show the apps, but also said he wasn't sure if they had sound capabilities. "She wasn't sure, either," he said, which is absolutely untrue. She was pretending not to know, not to understand how these apps work. Apps that she probably comprehends better than I do.

I was frustrated. When she got home from school, I had her immediately sit down and take out her iPad.

"I want to you tell me something on your iPad. I don't care what. Just tell me something."

She typed for a few moments and then had it speak. "Sam Houston is a hero at the San Jacinto."

"That was great," I said. "So why did you act like you don't know how that app works with your teacher?"

Called out, Schuyler made a face that I know all too well. Sadness, mixed with petulance. She hemmed and hawed a little, but I kept pushing her. I could feel that we were both becoming deeply frustrated, but you know how it is when a situation reaches a critical point. Sometimes you're just going to have that conversation.

Finally she said, "I don't want to talk like this." She held up her iPad.

"Schuyler, how else are you going to talk so that people know what you're saying?"

She pointed at her throat angrily. "I want to talk with my voice like everyone else!"

"Well, you can't!"

Silence.

There it was. I just said it.

"I'm sorry, Schuyler. But you just can't. And you know that."

Looking back on it, I don't know if I was blunt or cruel. I felt horrible, even though I don't know if I was actually wrong to say it. Her expression was one of hurt, and for a minute or two I thought she was going to cry. But she didn't. She sat back on the couch with an expression like that of a boxer who just can't fight another round.

"I know, Daddy," she said quietly.

And she does know. She knows better than anyone. But in her extreme innocence that another might call naiveté, Schuyler clings to hope. She doesn't understand genetics or neuroscience. She can't google her condition and grasp what it means to have a congenital condition that will never change, or a brain that will never heal because her monster lives inside its very architecture.

To Schuyler there's always hope that one day, she'll wake up with a clear voice and a strong, unfogged mind, and all of this will be a bad memory. Schuyler will wake up just like all the girls in her classes, girls who are pretty like she is but so alien in their constant chatter and their ever-fluid interactions. Even the kids who are nice to her leave her behind to a certain degree. They don't tease her. Her teachers say that she is mostly beloved by her classmates. But she's tired of being a cherished pet. She doesn't want her difference to be accepted. She wants it to go the fuck away, forever.

Hope is sometimes all we have. Emily Dickinson describes it as the thing with feathers, perched in the soul and singing a wordless tune without fail. That may be true. It may also be the problem. Hope has given Schuyler a perfect dream, but in the absence of that dream's unlikely transformation to reality, she's left with an expectation that will probably never be met, and she's blind to the alternatives. Schuyler can't talk, not well enough to navigate the world, but she has tools at her disposal to find another path. Her hope might just be spoiling her chance to find her way out of the dark, into a light that is very different from the one that shines on the rest of us, but a light nonetheless.

I felt like kind of a horrible father tonight, like I was smothering hope. But I'm not sure that hope didn't have it coming, maybe just a little. In the further conversations we had later, Schuyler talked about her AAC apps and how they were her way to talk as best as she could. She hadn't arrived, and she may very well push it all away again tomorrow. But it's clear that whether or not she's ready to accept some hard truths, she is at the very least processing them.

Schuyler doesn't let go of her hopes very easily, and that is an almost entirely wonderful thing. Against all my instincts and all my own unreasonable hopes and dreams, however, I need her to find her way out of this particular hole that her hope has dug for her.

The last thing we did before Schuyler went to bed tonight was to try on her clothes for her band concert tomorrow evening. Crisp white shirt, pretty black twirly skirt, the works. Tomorrow she'll position herself beside a bass drum, and she'll communicate exactly what she wants to the world. The weird, wonderful little girl with the big drum and the fierce hope.

It's a moment where she won't need words. I only wish there were more of them in her world, and in her future.

December 10, 2012

Birds of a Feather


This week at Support for Special Needs, I discuss the seemingly counterintuitive way that a small birthday party for a group of kids who are different can create a kind of chaotic comfort zone, if only for an afternoon.


December 3, 2012

The Quiet Place

Today at Support for Special Needs, I discuss the quiet place I go when things are troubling for me, the refuge I take when it becomes just a little too much for me to handle alone.

And it's funny, but it always seems to be Schuyler who's waiting for me there.


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.

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.

July 9, 2012

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.

July 7, 2012

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.

July 2, 2012

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.

June 25, 2012

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.

June 18, 2012

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.

June 14, 2012

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


June 11, 2012

Nomad

Today's Support for Special Needs post discusses the phenomenon of nomad parenting. But more than that, it talks about how that concept affects my own family. In the past, and yes, in the future.

If you're one of those people who never clicks through to read what I've written over at SfSN (and believe me, I understand the strain that extra click places on you; I am up late every night, tortured with guilt over the legions of carpel tunnel sufferers that I have no doubt created), here's the piece that might surprise you. We are looking to move to the Chicago area, hopefully within the coming months. We have our reasons, some of which I discuss in the piece that lies behind that brutal extra click, and some of which are personal.

I'm looking for a job. This is a little daunting because 1) I have a job now that I quite enjoy, and 2) my resume is a little… weird. It certainly makes searching for new work to be a challenge. So if you live in the Chicago area and either know of job possibilities or are a mighty hiring captain of industry yourself, please let me know. I've been shooting resumes into the internet void for the past week or so, and I'm starting to feel like one of those SETI scientists who monitor deep space radio waves and wait in vain to hear from aliens who want to be our friends. Or, you know, give us jobs.