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!

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.

Fat Talk

It began, like so many silly things do here in the heady days of The Future, with a comment I made on Facebook.

"I lost ten pounds in the week since I was at the doctor. No joke. Perhaps I should let this infection linger a little longer."

The short version of backstory is that for the past week and a half, I have been sick. REALLY sick, actually, with a one-two punch of what the doctor wanted to call pneumonia but which I weaseled her down to bronchitis (because I am so very very charming, no doubt) and a wicked sinus infection. The bronchitis was under control fairly quickly, but the sinus infection, my very first, lingered painfully and disgustingly. I'm going to skip the details, but suffice to say that due to a near-constant nausea, I had very little to eat that week. When I returned to the doctor for new, hopefully not-pretend antibiotics, the nurse weighed me, and yep. I had lost exactly ten pounds in the course of a week.

So I posted that fun little status update. There are two parts to it, which I believe can be identified as a) the "silver lining" part, and b) the "obviously a joke" part.

Well, maybe not entirely obviously. Someone left what I felt was a passive-aggressive response, linking (without comment) to "How To Spot Fat Talk So You Can Stop It". When I called her on it, she took the "oh, I'm just saying…" approach, and that pushed my button, I guess. Don't walk in the room, release a flatus and then pretend it wasn't you. She said she found "fat talk" to be toxic, and I guess it didn't matter that I was talking about myself, and that no, I wasn't actually advocating the use of illness for radical weight loss.

Because here's the thing: I didn't make a choice. Getting a nasty infection wasn't part of my plan. I didn't stop taking my antibiotics or stick Cheetos up my nose. I was sick, it sucked a very great deal, and I didn't eat much. I didn't really understand how much weight I was losing because I wasn't changing out of my pajamas much. I was a delightful treat; if you had knocked on my door this week, when I answered the door, you wouldn't have thought "Sexy MAN!" You might have phoned up the Centers for Disease Control after you finished spraying Lysol in your face.

I'm going to be blunt. She seemed like a perfectly nice person, but I found her point to be extremely unconvincing, as was another comment by someone else later. Because, again, it was a joke, and again, it wasn't a joke at someone else's expense. You can't just show up on someone else's Facebook page and take their self-referencing, self-deprecating humor and sanctimoniously apply it to yourself. Well, you can, but I'm not sure why you would want to.

Anyway, the whole thing got a little out of hand. (Trust me, you want to read that. I'll wait.)

Fun Internet kookery aside, weight is a tricky issue to discuss publicly. I know that in the "fat-o-sphere" (I really did just type that), there are a lot of specific rules for how these discussions are supposed to take place, with lots of trigger warnings and the like. I know none of these rules, and I'm not sure I care to learn them. Not because I'm a dick (or not JUST because, if you prefer), but because the weight issues I'm discussing are my own. I'm not sure I need a set of guidelines to talk about me.

I've always had issues with weight, ever since I was a kid. And while I've never been morbidly obese, I can't remember the last time I was exactly fit, either. I'm going to use some actual numbers today, since I'm sitting at the low end at the moment. For scale, I am six foot, two inches tall and possess all my limbs and parts in the usual proportions.

At my worst, during what might be termed my "County Fair" days, I weighed 280 pounds. No joke. I remember that day, when I stepped on the scale and saw that number. I was young, too, maybe twenty-six or so. I spent the prime of my youth eating and (more to the point) drinking as if an alien invasion were imminent. All I got for my troubles was about ten years of photos I will never show anyone, and well, yeah, perhaps a little type 2 diabetes. (That was a joke, too. I come from a long line of genetic diabetics, although I certainly tossed enough gasoline on the fire.)

By the time I met Julie, I was way down from that, maybe 250 pounds. I lost a bunch of weight when I was diagnosed with The Beedies at 37, but then I published a book and ate and drank a lot and gained pretty much all of it back. The last time I really remember weighing myself was about a year ago, and I was at an unpleasant 245.

Now here's where it gets fun. Last week, when I went to the doctor, I was surprised to find that I weighed 223 pounds. I knew I had lost some weight; my clothes told me that. But twenty pounds, for nothing? I was pleased.

When I went back to the doctor exactly one week later? 213 pounds. That's not all that far from my doctor's target weight for me. The last time I weighed this little, I think I was still receiving lunch money.

For those of you who also have had weight issues during your life, however, you understand a kind of universal truth. Numbers don't always mean a whole lot to a fat person. Not good ones, anyway. And when I say "fat person", I mean that in the same way that someone who has been clean and sober for twenty years still self-identifies as an alcoholic. Sometimes you can tell the formerly fat person by the clothes they wear, at least a size too large, as if they don't trust what their own senses tell them in the dressing room. I imagine sometimes you can identify the formerly fat in the ranks of the extremely fit and healthy. They watch those numbers closely, perhaps a little grimly. Their own silent exercise mantra might be "Never again."

You can be the obscenely rich CEO of a major corporation, but you can still probably list the names of the bullies who made fun of you when you were a little fat kid. You can have the most beautiful and successful man or woman on your arm at an elegant dinner party, but if you close your eyes, you can clearly see the faces of the pretty girl or the handsome boy who turned you down in school with a barely-concealed smirk on their face, the universal "As if!" sneer.

And if you were a fat kid who discovered early on that you could make people laugh at the jokes you made instead of the shape of your body, then you made sure to hone those skills. You learned to make jokes, and not just innocent ones, either. You learned that the easiest way to deflate a bully was to get the crowd to laugh at him instead, so you developed a sense of humor with an edge, and you never forgot how to use it. And you never ever forgot that if you really wanted to be funny and to keep yourself in the good graces of others, you saved the most biting jokes for yourself.

And when someone shows up on your Facebook page to tell you to use nice words when you talk about weight issues, even when you're talking about yourself, you push back. And you should. Because no matter what your size now, you're a fat person. And you're not about to let someone who (in your mind) apparently hasn't figured out How Things Work take away your own best defenses simply because when they see "fat talk", they take it to heart, as if every conversation about fat people is a conversation about them. As if the warm embrace of "The Fat-o-sphere" is the only place one can find relief, with words of acceptance and maybe some denial, but never anything harsh or sad.

Some of us, and I'm going to say that includes a lot of you reading right now, some of us learned a different way. And whether we hide our fat person past or joke about it or sweat and bleed it away at the gym, we at the very least own our fat person in our own way. If you're a fat person and you try to change that, you might be a well-intentioned person, but you really ought to know better.

Yours truly at 213. Don't get too accustomed to it...

The Shiny Future

It's Monday, which this time means I'm at SXSW in Austin (the Prodigal Son returns!) speaking on a panel, and also that there's a new post over at Support for Special Needs. Are these two things related? Maybe a little.

If you're in Austin today, it's not too late to come say "Hi, Rob!" or "You suck, Rob!" or whatever. I'm cool either way.

I'll be there. Will you?

For more information...

Manly Man Stuff, for Men

The concerns and issues surrounding men's health don't get nearly as much media attention as they should, but it's probably our own fault. We don't generally like to talk about it. Surpise! Men are taciturn about our health, particularly when discussing how it falters. Read more about it in this month's Journal of Duh.

Every November, however, thousands of men join the Movember campaign and grow a moustache to raise money and awareness for prostate cancer and other cancers that specifically affect men. Last year, over sixty-four thousand people in the US raised over $7.5 million. That's a lot of cheesy moustaches.

This year, I've joined up with a group of bloggers and writers who will be growing some lip fuzz for the cause. I would be thrilled if you would go donate at my Movember page.

More importantly, we would love to have other men (or women; I'm not here to judge) join the team. Anyone who has ever seen the atrocity that grows on my face knows that I'm not exactly entering this thing as a ringer. When I grow facial hair, it generally turns out looking like I need to wash my face or possibly consult a doctor. Unless you've got a job as a television anchorman or a professional soup taster, you can probably devote a month of your life to growing an ugly thing on your face for a good cause. And fighting prostate and testicular cancer is undoubtedly a good cause.

So join up, guys. The man-bits you save could be your own.

F-Day

R & S, a photo by Citizen Rob on Flickr.

This Father's Day weekend, I'm going to take it easy, maybe hang at the pool with Schuyler, get some barbecue with the fam on Sunday, that sort of thing. Not so much with the sitting at the computer, hopefully.

I did contribute to some Father's Day items elsewhere, however. I was one of the fathers quoted over at Love That Max: Why dads of kids with special needs rock, and you can read my thoughts on expectations for special needs dads over at Support for Special Needs: One Father’s Perspective on Father’s Day. So there you go, lots of fatherly pontification for the weekend.

Here's some interesting news as well. I'll be speaking at the Special Needs Mini-Conference at BlogHer '11 in San Diego in August. So stalkers and killers, go gas up your windowless vans and make room in your freezer for my head. I'll be easy to pick out of the crowd, I suspect.

Anyway, Happy Father's Day, everyone. No ties, please.

Have you ever seen Office Space?

Here's an embarrassing but perhaps amusing story for you. (Before you ask, no, Schuyler was not home for this incident. It would not have happened if she had been.)

This afternoon, I lost my shit. Julie was on the phone trying to accomplish an important task with a customer service rep who seemed to be doing everything in her power to obstruct said task. She was in full-on "There's nothing I can do" mode, with that tone that suggests she wished our names were Mr. and Mrs. GoFuckYourself since that's clearly what she wanted to say. At the conclusion of the conversation, when the person had succeeded in making Julie actually cry, I needed to print something off, and at this tense, unhappy moment, our printer decided that it was no longer in the business of printing.

It was a very poorly timed print error.

So yeah, I lost it. I cursed at the printer, and I hit it. Okay, I may have hit it a couple of times, but when the flimsy shelf on which it sat suddenly gave way, that was it. Swearing dramatically and creatively, I proceeded to stomp on the printer, repeatedly, feeling it crunch beneath my feet, hearing it make a sound that, while not as satisfying as the sound of printing might have been a few moments before, was nevertheless a wonderful guilty pleasure. I lost my temper in the most ridiculous, over-the-top way, and that was that for the printer.

When I got my sudden flash of anger under control, I looked over at Julie sheepishly. "Want to join in?" I asked weakly. Without a word and with a stoic expression, she quietly stood and walked into the other room without answering.

I started to get up to follow her, to apologize for my shameful, destructive outburst, but before I could take more than a step or two, she returned from the bedroom.

With a softball bat. Which she put to astonishingly effective use.

Anyway, our printer most definitely doesn't work now. But I think we both feel much, much better.

Pimpage

Both this blog and my book have made it to the finals of the About.com Readers' Choice Awards. It would be extra super swell if you'd go vote. You can do so once a day, every day through March 8. The winners will be announced on March 15.

• Favorite Special Needs Parenting Blog

• Favorite Special Needs Memoir

Thank you kindly for your support, yo.

My Year of Golden Bees

Monster hat
Originally uploaded by Citizen Rob

So, 2011. What have you got?

I'm not going to lie. 2010 was a rough year for us, in ways too numerous and depressing to list. For me personally, it was a year of things that I desperately wanted to work out ultimately NOT working out, in dramatic failures. For Schuyler, I suspect 2010 was even worse, a year in which her understanding of her own real differentness coincided with her classmates beginning to pull away from her and her strange, childlike ways. It was the year that I felt like her school might have begun to give up on her in some small ways, too. I'll always remember that 2010 was the year that we were asked to allow Schuyler's school to classify her as retarded.

I guess this year was the first time I realized that there are situations in which Schuyler attending school in a district with such a strong special education program might actually work against her from time to time. I have come to believe that there's a mindset that can take place in a strong program, one that suggests that they've seen it all before and know what will work for just about any kid, so if a kid is still difficult to reach, it must be because she simply CAN'T be reached. Schuyler is a very different kid, as I believe every special needs kid is wildly and perhaps sometimes tragically individualistic. Subsequently, I believe it's a mistake for any professional educator or therapist (or parent, for that matter) to believe that the past is always going to inform the present.

But I'm not a professional teacher. I'm a parent, and if I'm once again overbelieving in Schuyler, it is right and appropriate for me to do so. I don't think 2011 is going to see any change there.

It's hard, because one thing has truly changed this past year. Schuyler has a wish, although I'm not sure it's one that she would ever put directly into words, and it is the one thing that she can probably never have. Schuyler wants to be like everyone else. She wants to fit into a grey world of interchangeable children where no one strains to understand her. She wants to choose and build her weirdness for herself. The fact that she is unique in the whole world is not a very very special fact that thrills her now.

It still thrills me, though. It scares me and it haunts me, true, but it also thrills me. Most of all it makes me grateful that I am the one who gets to be her father and her guide in a world that doesn't exactly know what to do with a little girl like Schuyler and her monster. It's a full-time job, it's what I am supposed to do, it's who I am supposed to be, and while it precludes a lot of other things that I can't do or be because of it, it also makes me unique in the whole world, too.

Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.

Schuyler's challenges in this world, every last one of them, now involve her attempts and the attempts of her family and teachers and therapists to integrate her into our world. She doesn't fit, not entirely and sometimes not even mostly, but it is required for her to fit, so we struggle to make that happen. I am not at all sure, I am in fact entirely UNsure, that we are doing her a service by even trying, but there aren't viable alternatives and so we do it. I get the sense that this year will be a crucial one in this questionable but necessary work.

For myself, 2011 must be a year of changes, and the aspects that I can control are the ones within myself. When I go back and read the things I wrote over the past year, I saw a subtle change. I've always been sarcastic, and I've always engaged in dark humor, but this year I think I saw real bitterness in my writing, and a real loss of hope. I need to let go of that, this year more than ever before, because Schuyler is going to need a positive father as she makes some very difficult transitions. I'm going to need to be ready to fight harder than before, and to help her navigate school with a whole new crop of teachers and a whole new set of preconceived notions about what a kid like Schuyler might be capable of.

I need to find my positive center and hold onto it. If you want to call that a New Year's resolution, then fine. That works for me. I will clean my emotional house. I will let go of the things in my life that have been bumming me out, I will simplify my existence, and I will face my failures unblinkingly and then let them fall behind me. I found a quote from a poem by Antonio Machado that I love, a few lines that speak to what I need to do:

"Last night as I was sleeping, I dreamt -- marvelous error! -- that I had a beehive here inside my heart. And the golden bees were making white combs and sweet honey from my old failures."

More than anything else, 2011 is going to be about working to integrate Schuyler into this grey, mean, dumb world. But I need to make sure that I never lose sight of my greater challenge, which is to make this world, by force if necessary, a little bigger and a little more accommodating to her, too. Because I envision a universe that has a place for Schuyler, a world where she can be exactly who she is, and her fellow earthlings will watch her with wonder, and they will say "Holy fuck, that is an extraordinary person."

I like that world. It's the one I live in every day, and I need to remember how lucky I am to do so.

Letting Go

Schuyler on my birthday
Originally uploaded by Citizen Rob

Schuyler is growing up so quickly, and while I know that's something that every parent feels, I'm not sure they all feel it with quite the fear that I do. Well, perhaps they do at that. In just a few weeks, Schuyler will turn eleven, although just typing that word feels wrong under my fingers. Eleven? That's impossible. Babies aren't eleven. Don't be stupid.

Becoming the young woman that she is to be one day means letting go of the little girl she has been, and that's difficult, for Schuyler and, I suppose, for me as well. Lately it seems like there's been too much change, too many pieces of a childhood to put away at one time, too many grownup truths to face at once. Some of those truths are especially hard for me, the ones about myself and my own shortcomings in particular. It hasn't been an easy time lately.

The day after Thanksgiving, and on my birthday even, Schuyler received a rude awakening into a part of adulthood that has been particularly troubling during my own life. Out of nowhere, she suddenly began to cry, and hard. She indicated that a tooth was bothering her, and pointed to a part of her mouth where one of her baby teeth had been signaling its intent to jump ship for some time. But when I looked in her mouth, I instantly identified the problem, not with the baby tooth but rather with the permanent molar behind it. My stomach tightened when I saw it.

About half the tooth was missing. I was looking at the tissue inside the tooth.

So it was that after a night of Tylenol and lots of tears and Orajel, Schuyler experienced her very first root canal. I have to say, she was a total champ about it. There were some tears, but nothing hysterical. I sat next to her while she had it done, holding her hand the whole time, and while I don't think she had a great time, she was surprisingly resilient about the whole thing. We even had some fun laughing and taking pictures as one side of her face stopped working. But yeah, a ten year-old getting an emergency root canal. There have been a lot of little-girl-growing-up experiences we've been bracing ourselves for. This one caught us completely by surprise.

That surprise has been reverberating, too. Even with dental insurance, the crown is going to cost us a lot, and we were still trying to figure out how to get caught up as it was. That tooth is going to make for some changes around here, that much is clear. In the short term, we're going to become a one car family for a while. I simply can't make payments on my stupidly excessive car and still purchase The World's Fanciest Tooth. So we face some new realities, ones that plenty of families face, and I'm sure we'll get through it okay.

There's a hard truth to face. I'm not providing for my daughter the way I should. I have a good job, one that I'm frankly lucky to have, but I don't make enough money and I don't see any prospects for making more any time soon. We've been living an existence where one bad medical emergency (like, say, an emergency root canal) could torpedo us. It was only a matter of time, I guess.

Anyway, we'll make it, because that's what people do when things get tough. But the whole thing has amplified that nagging feeling I have. No, I'm going to just say it. It's not a feeling, it's a fact, one that I've stated on a number of occasions.

I'm failing Schuyler. I don't fail her for lack of trying; I like to imagine that there aren't many fathers who try harder than I do. But trying isn't succeeding, and the sinking feeling that I'm just not doing well enough for her has been threatening to overwhelm me. I don't see it as a result of depression. I see it as my ability to recognize an ugly fact. I don't feel like a very good father these days. I don't even feel like an adequate one.

Schuyler's been having issues at school, and I just don't know how to help her. She continues to fall behind her classmates, and it breaks my heart. Tomorrow she has a test in her mainstream class, a science test on matter, and we've been trying to study for it with her. But it is just so far beyond her. Last night, I sat down with her and went over the material, and while she understood solids and liquids and gases, the movement of particles and the basics of mass and volume, all of the rest of it, she just couldn't get a handle on it.

It was frustrating, for us both. As I keenly felt my own inability to teach her, at the same time I could see the look in her eyes. It was that sad, frustrated expression that she gets when she becomes aware, all over again, that she has troubles that her classmates do not, that she is broken in ways that sometimes manifest themselves at unexpected times.

I asked her if she understood any of it. She hesitated before admitting that no, she really didn't. And then I did something that I am deeply ashamed of, and yet given the same moment in time to do over again, I would probably do again. I gave up. I told her to do her best, and I put the materials away. I know it was exactly the wrong thing to do, but her frustration and my own failure were too much for either of us to process. It's not normally how I respond, but I don't know, it had just become too much. A day later, it still feels like too much. And while I know it was really hard for her, I think what I really mean is that it had become too much for ME. I'm deeply ashamed to admit that, but it's absolutely true.

Some of the most significant problems she's having are social, and they reflect on just how hard it has been and continues to be for her to let go of her childhood behaviors. Schuyler is a very loving little girl, and probably due to her nonverbal beginnings, she is very physically demonstrative as well. I always used to dread the day when her enthusiastic physicality would cease to be cute to the rest of the world, and I think that day is probably here. She is putting off her classmates, she touches them and hugs them and gets in their business until they feel smothered, and they push her away. Her teachers talk to her about it, probably daily, and we re-enforce the message as best as we can, but it's hard to convey that she can be that loving little girl at home, but not so much at school, where she will soon, very very soon, leave the protective shelter of elementary school for the Mad Max gladiator ring of middle school.

Schuyler is having to learn to leave a good, right part of herself behind, and it's hard for her. She needs to harden, she needs to put up some walls, and I am failing miserably at teaching her how. It's funny, too, because I certainly have no difficulty in putting up those walls for myself.

But I'm not her. I'm not good like her. I don't have the faith in a mean world that she has, a faith that she has somehow hung onto and nurtured her whole life, in spite of the many opportunities she's had to learn otherwise. She looks at the world and sees friends and sisters, and that doesn't change even as the people around her disappoint her time and time again. I don't know how to teach her to see people differently. I don't know how to take a thing about her that feels like an absolute good and squash it into a box.

I don't know how to teach her to let go of that.

A Beedies thing

I don't usually cross-post much, and I tend to keep the diabetes talk off this blog, for the simple reason that it tends to bring out the assmonkeys in battalion strength numbers.

But I wrote an article for dLife, called "Club Membership", that I think is worth sharing, precisely because of the previously mentioned assmonkeys.

Anyway, here you go.

-----

UPDATE, 12/3 - I guess I had a little more to say...

A quick note for parents of AAC users

So an I've mentioned before, I'm giving a presentation next week at ALATEC on AAC implementation, from a parent's perspective. (More about that trip soon.) The truth, however, is that my own experiences aren't terribly representative.

I'd love to get input from other parents who have experience implementing AAC into their child's life and curriculum. If you have any particular points that you think I should consider, please drop me a note, either here or by email.

Thanks for your input.

Mea culpa

Fighting the battles for a special needs child changes a person. I suspect every parent of a kid with a disability will tell you the same thing, how the people they've become are so far from where they began. And while it's fashionable and swell to talk about the positive changes and the ways we grow as people, the reality is that we also change for the worse. We harden to the world sometimes. From our positions of desperation and occasional lack of empowerment, we become cynical or jaded. Or even paranoid.

At the very least, we can become overly sensitive.

I can make all the excuses I want about why we reacted the way we did to our first meeting with Schuyler's new mainstream teacher. I can talk about red flagging, which is a very real phenomenon. I can talk about how we truly felt, in that moment, that we were being snubbed. I don't wish to minimize how that can feel, and how very often that is the case with parents of kids like ours.

But the thing I need to do now, most of all, is to apologize to Schuyler's new teacher. I received an email, never mind from whom, that shed a lot of light on the situation, and made me realize that yes, we almost certainly misread the situation. And because I am who I am, I took that misunderstanding and put a microphone in front of it. For that, and for hurting the feelings of a good public servant, I am truly sorry. I look forward to the opportunity to make that apology face to face.

Here's the other thing I need to say. As humbling and even mortifying as it is to come before you and make this apology, I'm still happy to do so. More than happy, I'm relieved and cautiously optimistic. This teacher apparently loves Schuyler, and while I can't imagine she'll ever grow very fond of Schuyler's jackass father, I nevertheless believe that she WILL be open to trying to help us reach our daughter. The fact that my take on the situation was so completely wrong could mean that a different, better experience might just be possible. It's worth a try.

Am I an asshole? I think probably yes. But my daughter isn't (well, not most of the time), and I'm hopeful, even in my contrition, that things might just work out for her.

"Where justice shall roll down like waters…"

Heathens at the gate
Originally uploaded by Citizen Rob

I delivered the sermon at a church on Sunday.

Okay, I know. But that's not as unlikely of a statement as you might think. I spoke at the Community Unitarian Universalist Church of Plano, so this isn't like, you know, that other time. Unitarians are a pretty accepting bunch. As one of them said to me after the service, "There's a saying that Unitarians are just Agnostics who have kids."

I delivered a sermon, recited a short excerpt from the essay I contributed to My Baby Rides the Short Bus and even read a story to the kids. (A Bad Case of the Stripes, by David Shannon) Everyone was exceptionally nice, I had a lot of very interesting conversations and no one made the sign of the cross or spoke in tongues before running shrieking from the room. It was my first time in a church in longer than I can remember; even my wedding took place in a university chapel, not an actual church. I felt very comfortable there. We might just have to go back for a visit one day.

If you're interested, both my reading and the sermon (which was really more of a speech) are available online at the church's sermon archive.

Immediately after I spoke, the congregation sang what I realized was a very specifically chosen hymn, "We'll Build a Land", that I wasn't familiar with, despite my years of playing church gigs as a semi-professional trombonist. I did a little reading and discovered that the words come from Isaiah and Amos (also the source of Martin Luther King's famous citation "Justice shall roll down like waters, righteousness like a mighty stream").

The hymn is quite simply a call to action. It invokes the same sense of community, of "the village", that I've been speaking about in every speech I've given since my book came out. It doesn't rely on God to make things right, but rather calls on all of us to bring peace and justice to the world. I think Jesus taught the same, not that God would come down and clean up our crappy, angry world for us, but rather that we should live lives that lead to righteousness. We have to take care of each other, and of the afflicted most of all.

Well, that's my understanding, anyway.

We'll build a land where we bind up the broken.
We'll build a land where the captives go free,
where the oil of gladness dissolves all mourning.
Oh, we'll build a promised land that can be.

Come build a land where sisters and brothers,
anointed by God, may then create peace:
where justice shall roll down like waters,
and peace like an ever-flowing stream.

We'll build a land where we bring the good tidings
to all the afflicted and all those who mourn.
And we'll give them garlands instead of ashes.
Oh, we'll build a land where peace is born.

We'll be a land building up ancient cities,
raising up devastations from old;
restoring ruins of generations.
Oh, we'll build a land of people so bold.

Come, build a land where the mantles of praises
resound from spirits once faint and once weak;
where like oaks of righteousness stand her people.
Oh, come build the land, my people we seek.

On the eighty-five

I wrote a little somethin' somethin' over at Support for Special Needs, on the topic of marriage and special needs families. Perhaps it's odd, the fact that I was asked to write about an aspect of life at which I have frankly not exactly excelled, but you should never underestimate the power of a solid cautionary tale. I share because I care.

Road trip

Smartass fortune cookie
Originally uploaded by Citizen Rob

Schuyler and I are heading back to Odessa, land of my misspent youth, to speak to a book club and visit the fam. Weirdly, this is actually the first book-related thing I've done back home. We'll see if anyone caught that part about "Odessalation" or "Slowdeatha".

A possible added bonus? I might just be playing my trombone in a public place for the first time since the Clinton administration, at the Summer Mummers in Midland on Friday night. We'll just have to see how tragic I sound. It might not be pretty. Well, I think I can pretty much guarantee "not pretty".

Entertaining? Well, in a NASCAR burning-wreckage-flying-into-the-stands sort of way, sure.

When large things loom

Us
Originally uploaded by Citizen Rob

When large things loom, it's the small things that save.

Someone recently told me that for all my efforts on Schuyler's behalf, the reality is that I'm the one who depends on her. My happiness, my sense of personal worth, my very identity as a person is dependent on Schuyler and her own success, not just in school but in life.

And I suspect that's absolutely true. Well, I'll go so far as to say that of course it's true. And I also suspect it's something like a universal truth. I imagine 90% of the parents who just read that said to themselves, "Well yeah, no shit."

For parents, that emotional dependency makes life... complicated. There's a fear that grows, for example, out of the risk of loss, or of failure. There are the choices not made, or at least not made easily, because risking your own happiness is one thing, but it's never really just about yourself, is it? And who can ever understand the relationship you have, not just with your child but also with your fear? It becomes like another family member. Or perhaps one more monster.

But there's a flip side to that relationship, that dependency. There's a kind of comfort that comes from the innocence of a child. Their lives aren't easy, but they are pretty simple. They focus like we do, on some level, but that focus comes in the service of a child's world and the basic elements that drive it. It's an intoxicating place to visit.

If you've been following my more recent entries, you've probably noticed a certain level of anxiety in my writing, and in my life. It's been a particularly rough week, lots of fear of loss and anxiety over the future.

But I have a world I can visit, one that's not so full of fear and loss and sadness and regret. It's the same world that Schuyler lived in all by herself for all those years, and its a world that she now shares with me, happily and without guile. Tomorrow, it'll include a trip to Chick-fil-A (which she's been asking about all week) and an early showing of The Last Airbender, which she's wanted to see ever since I first showed her that they were making a movie out of her favorite tv show. That world is going to include a weekend full of fireworks and baseball.

And tonight, as she got ready for bed, that world revolved around a few games of Hello Kitty dominoes, played by a very fluid set of rules known only to Schuyler. I don't know if she knew how much I needed that, but I'm grateful to her for it all the same.

When Schuyler was younger, even before she had much in the way of communication tools, she always seemed to sense when I was running out of whatever that stuff is that keeps you going through the deep water. When I was sad, I could always count on a tiny hand reaching out to me, and a wordless little girl from another world putting that hand on mine.

And tonight, it was Hello Kitty dominoes. Schuyler doesn't understand the large things that loom over her broken father any more than he does. But somehow I think that on some level, she understands better than any person in this world how the small things might just save her dumb lost daddy.

Sometimes, often even, I feel disposable. I think maybe I am. But Schuyler believes differently, and while I think she might be wrong, I'm going to go with her instincts on this for a little while longer.

If nothing else, I'd like to figure out her rules to Hello Kitty dominoes.

Fathers, Days

Us
Originally uploaded by Citizen Rob

It's Father's Day, so it's appropriate (and very cool) that I can point you to an interview I gave ("Fathering a Daughter with a Hidden Voice") to an excellent new resource site, Support for Special Needs. It was a fun interview that came out of a nice long chat with Julia Roberts, and I didn't make a single Pretty Woman joke, because I am occasionally capable of being a grown up.

Father's Day can feel a little strange for the fathers of broken children. Most of us feel a little broken ourselves. The reasons for that disconnect might not always be so obvious. The numbers are pretty clear; the primary caregivers for kids with disabilities tend to be mothers, and that's just a fact. I suspect that mirrors neurotypical society, but the fact remains that many, many fathers of special needs children are on the outside looking in on the day-to-day lives of their kids, and often by their own choice. It's a shameful truth, but one that does no one any good to ignore.

I hear it often. "I think it's so great that you're such an involved father!" I see the looks in the eyes of members of Schuyler's IEP team, mostly from the new ones, when I walk into the meetings, and when I speak up, as if they'd almost expect to hear Schuyler talking before a father would. And I see the broad generalizations, even here. In a recent post, when I expressed my own self-doubts and admitted that Julie and I hadn't fully faced some aspects of Schuyler's disability head-on, one commenter just mentally adjusted that and turned it into how Julie is the strong one, no self doubts and no illusions, but me? I was just like this commenter's husband, in denial and uninvolved in the details of my kid's education and care. In her head, the narrative reads that way, and so it became my narrative, too. And she's not alone.

Mostly, though, I get the opposite treatment. Some people treat me like an aberration. I'm like some bizarre extraterrestrial father who puts his daughter's well-being ahead of his own, one who goes to all the IEP meetings and all the parent nights and the playmates. "Here is a father who gives everything to his kid, and puts her happiness ahead of his own! Isn't that wonderful and weird?

Well, I call bullshit.

It seems like almost everyone has so much anecdotal evidence of crappy fathers who don't step up on behalf of their disabled kids. But in the past two years, since my book came out and I began traveling around and meeting other families, it has been my honor and privilege to meet some amazing fathers. And I'm not just talking about the ones who show up to the IEP meetings and doctor's appointments, either. I'm talking about extraordinary dads whose work on behalf of their own kids have changed the world for countless others, too.

Richard Ellenson saw a need for his son, whose cerebral palsy left him unable to communicate and for whom existing speech devices were inadequate for his particular needs. The device he created, the Tango, has been praised for its innovative design and success in social integration of AAC. Dan Habib turned his fight for full integration for his son into a celebrated documentary and an ongoing project at the University of New Hampshire, dedicated to creating and developing more inclusive schools. I've met extraordinary authors and advocates like Rupert Isaacson and Michael Greenberg. I've been in the company of some amazing fathers.

Amazing fathers, and yet they're exactly like all the fathers out there who work tirelessly for their children with disabilities. What sets these fathers apart, in my mind, is that rather than trying to find a way to fit into our society's narrow idea of what fathers are supposed to do, they've taken their talents and their abilities and they've forged into territory that hasn't always been welcoming to them.

Plenty of fathers don't do that. Is that because some of them are crappy fathers? Of course. But how many fathers respond to the low expectations of our society and our system, one that assumes that the mothers of these kids will be the ones who will take care of them? How many fathers go online to find information and end up on page after page of resources for Special Needs Moms? How many read the poems about how special those moms are, how hard they work and how they are the only ones these kids can count on? I know I see those sites and those posts. I see them every day, and even now, after everything I've said and done and written, after as many speeches as I've delivered and as many books as I've signed and as many IEP meetings I've attended and been a pain in the ass in, even now, I still hear the tiny voice in my head, the one that whispers "Your presence is not required. Your input is not necessary."

Look, fathers need to get involved. Fathers need to step up and take on their share of the work. That much is clear. That's not just in the disability community, either, but I believe it's even more critical that it happen in these families. This isn't an episode of Mad Men; the old models of fatherhood no longer work. I'm not sure they ever really did.

But there needs to be an accompanying significant shift in our societal attitudes. There has to be a change in how fathers are seen. Fathers of broken children aren't volunteers. We don't want partial credit just for showing up. And we don't want a pat on the head. We want to be involved. And we should be. You as mothers and as society should have the expectation that we're going to be, and with that, you need to be willing to step back and let our talents shine, let our unique perspectives contribute fully.

I think you might be surprised at what you get in return.

Alamo

It has been noted that my last two entries ("Truth can be a monster, too" and "A question of faith") are almost completely contradictory. They are. They are also both entirely accurate representations of my emotional state at the present time.

Funny how that works, the whole "people are complicated" thing.

The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.

But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.

And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.

On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.

If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de Béxar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.

But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.

I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.

Like I said, that represents a not-so-good day.