The Difference

Over at The 504:

"Like most special needs parents, when I spend time with the parents of neurotypical children, I become hyperaware of the differences."

A Life's Work

Over at Support for Special Needs, I discuss what has become of me in a post that I could have called "What I Want to Be When I Grow Up", if not for the fact that I am in fact quite old.

Two things. Three, if you count the chinchilla.

Two quick orders of business today.

First of all, I want to very publicly thank Dr. Janice Light from Penn State's Department of Communication Sciences and Disorders. I had the opportunity to speak to her class this morning about Schuyler and AAC and the experience of being a parent wielding a rubber sword. One of the very best things to come out of writing my book has been the opportunity to meet and speak with the young people who are heading out into the world to make a difference, to make THE difference, in the lives of people like Schuyler. They are my heroes, and it really is an honor and a privilege to share my own small insights with them.

Secondly, I'm happy to announce that I will be contributing to the new special needs blog, The 504, over at Parenting.com. You can read my introductory post, Meet Schuyler, Monster-Slayer. (It's sort of a "Hi, this is what I'm all about" post, so it's not exactly going to be new stuff for regular readers.) I'm happy that they've started this new project, and even happier that they've invited me to be a part of it.

Okay, that's it. Oh, and here's our new chinchilla, because as you may or may not know, chinchillas are exceptionally cool. (My Instagram and Facebook feeds are mostly about chinchillas these days, in no small part because it makes me happy, imagining everyone saying "What's with all the goddamn chinchilla stuff?" I gotta be me.)

Hello, Frida.

Moments

Over at Support for Special Needs, I discuss a movie we watched over the weekend, Now is Good, and how one of the central relationships of the story, that between a terminally ill teenager and her gradually breaking father, spoke to me in a way that is no doubt familiar to most special needs fathers.

Sandcastles

Today on Support for Special Needs, I discuss the societal battles that those of us in the disability community fight over and over, even the ones we know we'll never win, as if we're building and rebuilding sandcastles that we know will be destroyed by the tide every night.

I'm not going to lie. It gets old.

"Once more unto the breach..."

Today on Support for Special Needs, thoughts on Schuyler's return to school after the break, and how that maybe feels a little different in some ways for those of us with kids with disabilities.

If you're a parent in a similar situation this week, you know I'm feeling what you're feeling. And I know that it's... complicated.

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!

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.

"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...

"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.

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.

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.

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)

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.

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.

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.

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.

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.

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!