Charmed Life

Space Boy, Fly Girl
Originally uploaded by Citizen Rob

I was having a discussion with a good friend of mine last night, and the topic had turned to health, specifically her own, which had hit a few bumps recently. She wasn't complaining, but nevertheless she interrupted herself to say, "But I know you've got a lot more on your plate to worry about."

This might sound strange, considering the sort of downer tone my writing has taken over the past few months, but I was a little surprised to hear her say that. I guess I've had a lot of issues concerning finances and my own health that have piled up on top of everything else, but as I said in a recent post, none of those other concerns are ever going to eclipse my worries over Schuyler. Like that anecdotal unconcerned frog in the slowly heating water, however, I think I've become accustomed to my fears.

I write about them here, because I'm a writer and this is where I go to sort these things out. But in my day to day life, I don't think I walk around wringing my hands and muttering to myself, my brows constantly furrowed. That's not me at all. I might live in the shadow of my concerns, but I don't know, perhaps most of the time I just think of it as shade.

The fact is, yeah, I worry. Schuyler's future is daunting, and as more and more of that future turns into the present, the more oppressive that present becomes. Schuyler's own personal development issues are frankly terrifying; she remains an incredibly naive little girl, and middle school does not typically present a very nurturing environment for innocents. I feel like we might be serving her up like a buffet for bullies, and I'm not sure I still have confidence in the school to take care of her.

There are all the other possible future issues to give me fits, too. Bad boys, mean girls, apathetic teachers, poor fathering decisions, bad tween television, a $7000 speech device disappearing, evangelizing Christians, the Plano PTA, Amber Alerts, No Child Left Behind, Lady Gaga worship, pieced ears, boobs, and her first period. And I never allow myself to completely relax about seizures. Some of her monsters are Everygirl monsters, but the ones that are just hers make the rest of them bigger as well.

But here's the thing that's important for everyone to remember, myself most of all. Schuyler's future is murky and unseeable because she is, in a very real sense of the word, entirely unique. She really is that purple snowflake. And while that means that every step feel like it could be the wrong one, it also means that I get to live a life unlike anyone else's.

Schuyler is a little girl with a monster in her head, yes. She uses a computer to communicate, she's going to be in special education classes for the foreseeable future and her prospects for living a completely independent life are questionable at best. She's got some hard years ahead of her, and there's just no way to dodge that.

But Schuyler is also a vibrant, energetic little girl. She's curious and positive and genuinely funny. She's more beautiful than any girl who shares my DNA has any right to be, and she's got a sense of style all her own. She will draw a picture of you in an instant, and you'll always get a crown. Schuyler loves easily and hugely. She takes bites out of the world without hesitation or inhibition, and certainly without regard to how rough that world might be. She might live part of her time in an internal world that she cannot or will not describe in detail to the rest of us, but if you allow yourself to be open to her and the way she expresses herself, she might just let you see snippets of it for yourself.

And I am the guy who gets to be her father.

I am the one who gets to guide her, but I'm also the one who gets to grow with her, and in ways that the rest of you can only glimpse from afar. Schuyler makes neurotypical sound boring. She makes the idea of parenting a typical child with a typical narrative sound a little empty and a little grey. People meet Schuyler and see the astonishing human she's turning into, and they envy me for having her in my life and in my home every day. And they know that as sad as it might sound that Schuyler might spend the better part of her life living with her parents, that scenario might not be all that terrible for me.

And if the fear and the worry and the fight and the sacrifices are the fee I pay to secure the privilege of being Schuyler's father and walking down that path with her for as long as she'll have me and for as long as I'm able, then I would say that I have been blessed with a charmed life.

The anxiety and the fear and the sacrifice, those are the pieces I write about, and I'm sure she's aware of them already on some level. I'm not interested in pretending otherwise; it's the reason I wrote my book, for her to understand one day. But the rest of it, the stuff that makes me richer than anyone I know, the moments of my life that I don't share as often here because they're hard to describe but also because I kind of like keeping them to myself -- that's the stuff by which I believe Schuyler defines her life and her father. And I think that even when things are hard for her, she understands that she's living a bit of a charmed life herself.

Adventure Camp

Adventure Camp
Originally uploaded by Citizen Rob

Some of us have had a better week than others.

Mine was a little shaky. First of all, I've been tracking my blood glucose levels for the past week and a half or so on account of a somewhat disastrous doctor's visit, and it's been something of a struggle. I'm not going to go into it in detail because any time I mention my diabetes, I seem to hear from the kook fringe on a whole new level, about how I'm a fat piece of shit who deserves my diabetes, or how I'm a Type 2 and not a Type 1, so I don't even KNOW how bad I could have it. So no, not a topical door I'm kicking open, but the beedies have been something of a bummer.

On top of that, Schuyler went away for a three day camp. By herself. And I was a big ball of anxiety the whole time.

I've been calling it "Adventure Camp" for weeks, even though the school inexplicably (and boringly) refers to it as "Fifth Grade Outdoor School" for some reason, but I was pleased to note that the facility itself is actually called the Collin County Adventure Camp. Schuyler has been in a state of alternating excitement and fear about going to camp. She's indicated that she's having a tough time making new friends at school this year and that some of the kids have been mean to her. She told us that she didn't want to go to camp unless we were there (apparently there's no party like a Smelly Old Boring Parents Party), and at school, she told her classmates that she wasn't going (because we wouldn't let her). But in the days leading up to camp, her excitement level grew, and she was telling stories about how she was going to catch a bear at camp, and quite possibly eat him, too. By the time Monday rolled around, she hopped on the bus excitedly without so much as a glance behind her.

I wish I could say that my own anxiety level diminished, but I've been very keenly aware of how high the stakes are here. If she made friends and had a good time, it would very likely make the rest of her school year go much more smoothly, and help grow the community of classmates that will follow her into the horrific Lord of the Flies wasteland that promises to be middle school next year. And if camp went poorly, I feared that she would never get back on track.

Well, apparently Adventure Camp went very well for Schuyler. She missed out on that bear hunt, sadly (although really, I would prefer to be with her when she makes her first kill), but she engaged in archery, paddled a canoe, and even caught a fish. ("But just one," she's quick to emphasize; apparently she already has an intuitive feel for some of the wackadoo animal rights email I've gotten over the years.) She came home with a souvenir mug signed by her friends and teachers, a layer of kid filth that was impressive even for her, and a general air of contentment that we hadn't seen for a while. I think Adventure Camp was exactly what she needed. What we all needed, really.

Things aren't perfect; this didn't reset any of our concerns about the school year. The notebook that was supposed to be filled with scientific observations was mostly blank, for example. And in the few weeks she's been in school, Schuyler has yet to bring home a single piece of homework from her mainstream class. We won't be meeting with her mainstream teacher for a few weeks yet, but when we do, we'll still have the same questions and concerns that we've had for some time now. We're not interested in mainstreaming as an exercise in macaroni art; Schuyler will not be attending Potemkin Village Elementary School if we can help it. And I know that we're not the only parents who have had a rough year so far. There's still a lot of work to be done here.

But at the same time, Schuyler's experience at Adventure Camp appears to have been a step in the right direction. She survived, and she wasn't tormented or abandoned in the woods by the mean girls. For that, I am happier than I have the words to express.

Incidentally, we only heard about Schuyler's activities from her teacher. When asked how it went and what she did, Schuyler merely gave the same infuriating little smirk and said nothing much more than she had fun. Maddeningly, Schuyler still loves her secrets. I hope that the ones she chooses to keep over the next few months and years continue to be positive ones.

But I fear otherwise, and that breaks my heart.

Forever Monsters

She calls him Fuzzy Brown.
Originally uploaded by Citizen Rob

Schuyler has been in fifth grade for two weeks now. It's hard to get a direct sense of how it's going for her. By the very nature of her condition, communication with Schuyler always takes place on her terms. More than typical kids, she expresses exactly what she wants and not one word more, and even her expression of what she's feeling and thinking is wildly imperfect. Sometimes she lacks the words for exactly what she's feeling, and other times she lacks the patience to put them together on her device. And often, she's lacks all of the above. I think she gets tired of her monster, more now than ever before.

Nevertheless, some details are coming out. She occasionally says she doesn't like going to school, which is certainly not unusual for most kids but is very much so for Schuyler. She has, until this year, shown an unfaltering nerd's love for school. Now she goes, but dutifully. When asked about new friends that she might be making, she dodges the question by saying she'd rather talk to her old friends. And when asked about the big 5th grade adventure camp getaway that's coming up, she either says she doesn't want to go, or that she only wants to go if we go with her.

Most of all, we've observed how her neurotypical classmates treat her in person, how they avoid her attention and are far too cool for her heartbreakingly naive affections. I find myself sort of hating them. It's wrong, I know, to hate little kids. But there you go. One more shameful confession for the therapy file.

Schuyler is very conscious of how the ease with which she once made friends doesn't always come for her. She's aware of how she really is very different from her NT classmates in ways that perhaps she looked past before. It's happening now, we're watching it happen, and it turns out that despite the fact that I've said it before about other things, THIS is now the hardest part for me about Schuyler's monster. The world is becoming hard for her, and she knows it.

I had an event at work the other day, a back-to-school cookout at the university. I sat and ate my low-bid, state university food service burger (who am I kidding, though; it was delicious), and I watched all these young students, so full of promise, and their faculty, confident and at the tops of their careers. I sat there amidst it all, watching these people as they took hold of their futures and of the discipline that they'd chosen into which to pour their passions, and I felt separate from them.

I know Julie feels this way at work sometimes, too. We listen to the petty complaints or the small victories of people whose lives are so simple, and we know that when they go home to their non-working lives, there aren't necessarily monsters waiting for them. And they don't know what waits for us when we go home, either, our world of uncertainty and of loving this little girl so hard that it hurts, because that's what it does. It hurts, this love, it hurts when you love someone but feel powerless to help them. And the rest of the world, the people we work with and the people we deal with every day, they can't see that.

Watching everyone at this cookout reminded me that this life, this thing that I do and that I think about every minute of every day, this is who I am now. I can try to identify myself as a writer, and I still like to pretend that I'm a halfway decent trombonist, but in reality, that's mostly beside the point. I am Schuyler's father, and her advocate, her overbeliever and her protector. I get it right, and I get it wrong, but it's what I do now. It's my life's work and I get how privileged I am to have it, but since last fall's meeting with the school, we are facing up to the probability that when she's an adult, Schuyler will likely live under our care. This is a rest-of-my-life gig, and that's just the way it is.

There have been people in my life who haven't understood that, people I've had to walk away from in the end. Some have seen this as a life I've somehow chosen to live, and maybe they think I'm not even living it all that well anyway. It's hard to explain to someone who has no frame of reference that I can never walk away, and that when I make mistakes and when I get it wrong, those failures cut deep because I'm afraid that I will never be able to make things right. I'll run out of time, and that will be that. Schuyler will miss her window of opportunity because I didn't get it right, or because I took my eye off the ball and the game just fell apart.

When I look back on what I've written of late, I can see how I've been repeating myself a lot, ever since last spring. I can see how sad and self-indulgent my writing has become, to the point that I actually find it a little challenging to even go back and proofread my work without becoming irritated at the big fucking baby I've become. But the truth is that I am a bit lost.

When something goes wrong at work, or when I get a phone call because I'm late making a car payment or paying a bill, or I disappoint someone in ways small and even not so small, I react in the same ways that everyone else does, because that's the world I live in. My car finance company doesn't care, and maybe they shouldn't.

But when someone is clamoring for my attention or waving a bill in my face or wanting a piece of me that I can't give them or expressing how very very much I've disappointed them, they need to understand something that I can't change, as much as I'd like to.

No matter how dire their need is, it's not ever going to be the thing I am the most worried about on any given day. It's simply not. And the things I do worry about the very most are the ones that I can change the very least.

These are the monsters that never go away, the tenacious, forever monsters.

Do you want to hear something really awful? And it is sort of horrible, made more so by the discovery in a recent conversation that Julie feels exactly the same way. One of my worst fears is that one day, hopefully far in the future, but on the day that I die, I'm afraid that my last whispered words, my last conscious thought, will be simply, "But who will take care of Schuyler now?"

Sacrifice

Sacrifice

I gave an eye to save from night
A babe born blind;
And now with eager semi-sight
Vast joy I find
To think a child can share with me
Earth ecstasy!

Delight of dawn with dewy gleam
On damask rose;
Crimson and gold as pennons stream
Where sunset flows;
And sight most nigh to paradise,
Star-studded skies.

Ah! How in old of age I feel,
E'er end my days,
Could I star-splendoured sky reveal
To childish gaze,
Not one eye would I give, but two,--
Well, wouldn't you?

-- Robert William Service

Three Things

I'm closing this particular post to comments. Sometimes I need to hear, but occasionally, I just sort of need to say.

A good and thoughtful friend asked me recently to name the three hardest things about my life. It was an interesting question. While answering it (and sharing my answer here) is extremely self-indulgent, and with an acute awareness that my life is a parade of royal indulgences compared to what most parents in my position deal with, here's what I said. I answered very quickly, with almost no thought, but days later, this still feels accurate.

• I am tired of failing the people around me. Particularly Schuyler, I hope it goes without saying, but yeah.

• I am tired of being poor.

• I am tired -- I am exhausted and worn down to a grooveless record by it -- I am very very tired of being afraid of the future.

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.

Red Flag

Schuyler begins the fifth grade tomorrow.

So it begins.

I've written at length about the anxiety we experienced last spring in Schuyler's most recent IEP meeting (here and here and here), so you can imagine there's a certain amount of trepidation around here as we start back up. Nothing has really changed over the summer, except perhaps that everyone has had time to either think about what's best for Schuyler or entrench themselves more deeply in their positions.

Well, perhaps some of us have been doing both. I'll own up to that.

A few days ago, Schuyler's school held its annual "Meet the Teacher" hour. It's not a big deal, just a chance to see the classroom and meet with the new teacher and dump off the required metric ton of school supplies. But for us, this first meeting with Schuyler's mainstream teacher has always presented an opportunity to try to measure one thing in particular.

Is this teacher going to understand? Is this teacher going to get Schuyler?

This year, we had an additional concern. At last spring's IEP meeting, we were informed that the school's diagnostician wanted to do an evaluation of Schuyler that she anticipated would result in my daughter being identified as mentally retarded. Furthermore, she expressed the opinion that it was extremely unlikely that Schuyler would ever be fully mainstreamed. This evaluation met with the tacit agreement of the rest of her team. (It's probably worth going back and reading what I wrote at the time, "Truth can be a monster, too".) This year, we're operating under this new reality, or rather this new reality as defined (and data-supported, by golly) by the school.

Schuyler's special education team remains the same this year, as it has pretty consistently for a while. The "Meet the Teacher" hour has always been an important one for us, in that it has given us our first glimpse of how Schuyler's mainstream teacher might approach her. We've had positive meetings in the past, such as last year when her new teacher admitted that she was reading my book in order to try to have a better understanding of how Schuyler works, or the meeting with her second grade teacher, the one who eventually started studying up on brain disorders like Schuyler's and who expressed her desire to continue towards special education certification even after Schuyler had moved on. We've also had bad vibes at these meetings, when we met teachers who seemed friendly enough but who seemed to put up the wall, the one that suggests "You are parents and I am a teacher, and while I don't know for a fact that you are morons, let's just start there anyway." And our impressions turned out to be sadly prescient.

This year, however, we wanted to impress upon the new mainstream teacher that our own personal expectations were going to be much higher than what her IEP indicated. We wanted the new teacher to know that what we wanted, what we expected, was for her to be an overbeliever in Schuyler.

Well, we didn't get the opportunity. To put it bluntly, we were completely and, we believe, deliberately blown off.

When we came to the classroom, the new teacher was greeting and talking to other parents, but from the moment she saw us, she could barely give us the time of day. She was short with Julie for having some trouble with Schuyler's desk, and was unfazed when the problem turned out to be that the desk had been placed backwards. She wouldn't make eye contact with either of us and placed herself on the opposite side of the room from wherever we stood. When I finally walked up to her and began asking questions of her, she answered ONE of them, then turned and actually initiated a conversation with another parent.

It was rude, but more than that, it felt deliberate. She actually refused to talk to me about my daughter. I wondered if I was just being overly sensitive until Julie said, "Wow, I don't think I've ever seen anyone be that rude to you, ever."

I don't know anything about this teacher, other than the fact that she did work with Schuyler a little in a supervisory capacity last year in the after school program. She may feel like she knows all she needs to about Schuyler, and therefore our input isn't necessary. God knows I've met plenty of teachers who wear a very thinly veiled contempt for the parents of their students, and I understand that they've probably got perfectly understandable reasons for feeling that way.

But when I mentioned this on Facebook, one person suggested another possibility. "It sounds like you are what is known as a 'red-flag parent' - you actually want them to do their job, follow the law and listen to you and your concerns," she said. "They don't like that, because it costs them time, effort and money."

That seems a bit extreme, but I don't know. That may very well be the case. And if it is, then fine. I can't believe at this stage that anyone at Schuyler's school would ever think we might respond well to a "shut up and go away" vibe, but sure. We can start this year off like this. We don't have to have the conversation about our expectations for Schuyler's future during the "Meet the Teacher" hour.

We will certainly be having it, though. Sooner rather than later.

When I wrote Schuyler's Monster, I gave the book an ending that felt positive, but not for narrative reasons so much as because that's how our situation felt at the time. Her new school, our new community, all of it felt positive, like we'd begun a new chapter in Schuyler's life. But the reality is that even in a good school, the people who teach a child can lose their way. Even in a home where both parents advocate hard for their kid, they can miss the keys that open the right doors. There aren't any tidy endings or rousing victories. Only the ongoing work, the struggle to get it right, and by doing so, to give her a chance in this rough world.

I know that Schuyler's school district is one of the best in the state, and maybe in the country. And I certainly understand that by now, the teachers who work with Schuyler, including her new mainstream teacher, feel like they know how best to teach her, since they know her and have been working with her for a few years now. But the fact remains that according to their own evaluations and their own observations, the way things have been done haven't been working. With all due respect to the skills and the hard work that have been brought to bear on Schuyler's education so far, I think it's clear that being an "expert" in Schuyler hasn't been enough, either from them or from us. Something has to change, and some kind of new approach is necessary.

And if we have to be red flag parents to make it happen, then we're okay with that. We've done it before.

Seven years

Pondering monsters
Originally uploaded by Citizen Rob

Last weekend marked a strange anniversary. Some years I remember it, and some go by unnoticed. Perhaps because the past week has been sort of awful and reflective on a bunch of different levels, this year I've been thinking about it a great deal.

It has been seven years since Schuyler was diagnosed with bilateral perisylvian polymicrogyria.

I think I can safely say that I've never experienced as much change, as much growth and heartbreak and joy and failure and LIFE as I have in these past seven years. In a very real sense, I feel like a different person than I was that beautiful summer day in Connecticut when our world came crashing down around us, albeit soundlessly and invisibly to the rest of the world and particularly to Schuyler. I remember how on that sunny afternoon, she kept spinning in her little private, wordless world, the one she still visits from time to time but no longer seems to live in.

Our world fell apart, but it came back together again, completely different and not pretty, but somehow stronger. The worst case scenarios we were given were mostly not to be. Schuyler has a few things she can't eat and a few tasks she finds difficult to accomplish with her clumsy hands, but she's otherwise completely ambulatory and mostly unmarked by her disability. She sometimes experiences a strange anomalous electrical storm on the left side of her brain when she sleeps, but it doesn't seem to be doing anything other than just happening. Schuyler's not having the seizures that we were told were probably inevitable, and I am beginning to feel ever so slightly comfortable with imagining a future without them ever arriving. School is hard for her, and I am no longer confident that her team really understands her or what she's capable of. But she's also in a good program where even when they get it wrong with her, they are getting it more right than most schools ever would. She's delayed and unable to speak, and she might always be, but she's not trapped in her secret world anymore. She's trying with all her heart to be a part of this one, this beautiful, hateful, hard grand world that has never understood her but which has mostly welcomed her just the same.

As for me, I've come to see my weaknesses, as a husband and as a provider, and as a father. As aware as you may believe you are of the things at which I have failed, I hope you'll understand that I am even more acutely aware of them. But at the same time, I've grown as a person. I've become a better father, and I've learned to trust my instincts with Schuyler, because even when I'm wrong about what she can do, I like to believe that I mostly err on the side of overbelieving in her. I've learned that everyone needs people who love them enough to overbelieve in them. In Schuyler's case, she has a funny way of ultimately meeting those expectations, albeit in her own time and in her own way.

I've learned over the past seven years that when Schuyler stumbles, when she doesn't meet academic expectations or fails to communicate the things that are happening inside her broken but beautiful brain, she usually does so because someone out here in this world has failed her. Her teachers haven't found the tools to teach her or the methodology to reach her. Or her parents have dropped the ball in some way or another, or the technology that is supposed to help her is inadequate to the task.

Perhaps that overbelieving is informing my perspective, but I believe that most of Schuyler's failures are ours more than hers. And in seven years, I've learned to embrace the ancient wisdom of the Chumbawamba. We get knocked down, and we get up again. Oh yes.

Schuyler's diagnosis didn't change who she was. She's had her monster since before she was born, since before she even looked like a tiny little human fetus. She had her monster when she was a guppy, and probably before we even knew she was coming.

No, her diagnosis changed who we were, and who we are today. And if it wounded us, it made us stronger, too. Not like an athlete whose body becomes beautiful and efficient through training and exertion, but like some old scarred animal who has been bitten and scratched and chewed up, but who always comes back for more, desperate to protect its young from the biting monsters and an unforgiving world.

So there it is. Seven years.

Happy anniversary to Schuyler's monster, you motherfucker.

"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.

And then it was summer.

(The perhaps inevitable result of scented markers and fine motor control issues...)

---

First of all, I've posted my monthly essay on Hopeful Parents. Not a long or particularly profound one this time, but it's what was in my head and so there it is. Sometimes the thing I need to say is as simple as "Hey. Cut it out."

Schuyler has begun her summer with us, and we're walking a fine line between "Whee! Isn't summer FUN?" and "Holy crap, we've got a lot to do. Here's your homework for the rest of the day. Do it now, and maybe you can catch the last dying rays of the sun before it's time for bed."

The trick, I think (hope), is to keep it interesting, and so far I think we're doing okay. Schuyler's new fascination with email means that when I send her a random funny photo and ask her to reply with a story about it, she's into the task. In the same vein, math puzzles, ebooks, word games, all hold her attention when they are presented on her iPad, which is turning out to be an even better tool for her than we'd anticipated.

She comes with me to my office on days that I work, and she draws or writes or reads, or otherwise amuses herself on her iPad. (Thank you, streaming Netflix.) We talk a lot and we wander the campus when one or both of us needs some air. My new office is down on the bottom floor, in the back of a student computer lab that is closed during the summer, so it's quiet while she's here. I'm happy to have the company.

So this is our summer. Mostly I find myself focusing on being fun and engaging with her, and trying hard not to let on that in ways both large and small, and both fleeting and forever, I feel like my world is slowly falling apart around me.

Schuyler's Poetry Book

Schuyler has been writing poetry in school, accompanied by her own drawings. I'm not under any illusions here; aside from perhaps the one about the fox (which is also my favorite), these poems are clearly the product of a LOT of guidance and help from her teachers.

What keeps it from being "macaroni art", in my opinion, is the fact that the concepts and imagery should be very familiar to anyone who knows Schuyler. It's all hers.

(Just this once, I'm going to keep comments closed on this post. I wanted to share something special instead of just my insecurities, as a break from my self-indulgent writing of late. Either you'll enjoy it or you won't, but I don't need to know either way. I know how I feel about Schuyler's work. And that's enough for me.)

---

COUPLET

I heard of a fox
I opened a box.
I heard of a fox
He's wearing my socks.
I heard of a fox
He jump and he knock.
I heard of a fox
He has the pocks.

---

HAIKU

Puppies
Puppies can look sad.
Puppies are like little dogs.
I like to hold them.

Pasta
Ravioli rocks.
Ravioli is awesome.
Cheese filled pasta squares.

---

"Queen of this whole world."

---

QUATRAINS

I went on the field trip.
I ate a cookie and a chip.
I wanted to give a big cheer.
When I saw a pretty deer.

I ate a cookie that was chocoate chip.
I found it on a pink spaceship.
Through the air the ship went zip.
I am going on a trip.

---

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.

A question of faith

So yeah, it's been a rough week.

We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".

It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)

But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.

They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.

Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.

Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.

Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.

According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.

Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.

Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.

The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.

We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.

What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.

Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.

I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.

Truth can be a monster, too

Monster hands
Originally uploaded by Citizen Rob

I go out of my way to portray myself as a big shot author and disability advocate. Just look at that suit, after all. I must know a lot about this stuff, which is why I get asked to come speak, right? And if I post enough photos or event notices, you might just forget why I'm really here, and why I had a book published in the first place, and why people really ask me to speak (unless they are Baptists). If I'm tricky enough, you might just forget that all I am is a father, and everything I do is in that capacity. Am I an author, or a father who wrote a book about the only thing I seem to know how to do? Does that distinction even matter?

I'm a father, and not just a father, but the father of a mysterious and broken little girl whom no one in the world seems to understand completely. Not her teachers, not her therapists or diagnosticians, and not her extended family. There are times that I think maybe I understand her, but of course that's not true. I try my best, but I am crippled by my love for her, which sounds like a wonderful thing but in reality is wrapped in fear and bias.

I've written in the past about our resistance to the desire of the school's educational diagnostician to administer a new cognition measurement test to Schuyler, with the aim of a more accurate IQ number that, in her opinion, would likely place Schuyler in the range associated with mental retardation. When it came up again early this semester, we didn't grant permission to administer the test that would measure cognitive impairment (and would include the IQ number and possible MR label), but we went ahead and gave permission to give the rest of the evaluation, which would measure academic skills and performance.

We got the report this week, and it was pretty negative. The diagnostician prides herself of her straight talk, which I appreciate, mostly. She believes Schuyler is retarded, to put it bluntly, and we do not. It's a difference of opinion, although I don't think of it like one of those Coke-or-Pepsi, Mac-or-PC things where we can just agree to disagree. This matters. But still, she's a professional and her opinion counts.

The report doesn't say this, of course, since we refused the cognitive evaluation. But it presents a pretty bleak picture of Schuyler's abilities. And it caused us to begin asking questions about Schuyler's present and her future.

At her annual IEP meeting today, those questions were answered.

So here's the part where I confess that I've been lying to you about something. I haven't been doing it intentionally; until today, I thought it was true myself. But here it is, our new truth.

Schuyler isn't really being mainstreamed. Not to the extent that we believed, anyway. Schuyler goes to a regular fourth grade classroom for science and history and special little projects, and of course she goes to art and music in regular classes. But the bulk of her academic work, the core subjects like reading and writing and math, these take place in her special education class, and the work she's doing there is not age appropriate. Her progress is steady, but not enough to bring her out of special education, and according to her team, she is unlikely to ever catch up.

When I expressed our goal of having Schuyler primarily mainstreamed by the time she leaves middle school, we were told flat out by the diagnostician, with the silent agreement of the rest of the team, that Schuyler is very unlikely to reach that point.

How do we feel? I can't speak for Julie, but for myself, I feel like I've been living a big joke. I feel like in my mind, Schuyler was a serious student with a real shot at living and succeeding in the neurotypical world, but to her teachers and her team, our goals were unrealistic. At one point the diagnostician said that she understood our need to be unwavering advocates and to believe that anything was possible, before she pointed out that it was her job to present the facts as she determined them. And in her eyes, Schuyler isn't just delayed. She has a significant cognitive impairment, and that's that.

We know Schuyler is delayed, yes; remember that she didn't have any real expressive language until the age of five. Her brain and her world developed internally, without language or much real guidance, and I've always believed that the key to reaching her was to understand her world and how she moves through it. But perhaps I'm alone in that belief. We have always understood that she was behind, but it wasn't until today that we really faced the possibility that she might not have the capacity to ever catch up.

I've stood in front of audiences of approving therapists and parents who wanted to believe me almost as much as I wanted to believe myself, and I've told them that thanks to her AAC technology, her good school program, her unstoppable will and her broken but clever little brain, Schuyler was spending the better part of her day in a regular, age-appropriate class, doing the same work as her fellow fourth graders and well on her way to graduation and success.

But as I found out today, that wasn't true. Today I found out that Schuyler may be uniquely broken, but she's got a struggle and a future ahead of her that's identical to thousands of other kids. She's in a school that will continue to teach her and care for her better than most, but one that has a realistic, data-supported expectation for her abilities that we cannot share.

I love my little girl, more than I ever thought possible, and I believe in her with everything I am. But today, I faced the fact that my love for her might just be blinding me. For all my fancy book events and all my inspirational speeches and all my "gee, what a dad!" accolades, in the end I might be just like any other parent of a disabled child who has convinced themselves that the future is going to be easier, not harder, than the past and the present. I've looked at families with kids who sit solidly within that MR diagnosis and I've counted myself fortunate that my daughter has future options unavailable to them, but that might not really be true after all. It's entirely possible that I've stupidly and arrogantly pitied my own people.

My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.

So how do I feel? I'm tired. It's exhausting, trying to build a fantasy world in which you child's disability isn't going to hold her back forever. It's a full-time job, convincing myself that everything's going to work out somehow and that one day she'll tell people "Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I'd like to dedicate this Pulitzer to them."

And it requires a constant, unblinking effort to convince myself of the very very pretty lie that my little girl is going to be okay.

Uninvited

A few weeks ago, I was invited to speak to an autism book club at a large Baptist church here in Plano.

Yeah, I know what you're thinking. I know because I thought the same thing. Well, two things come to mind, actually. The most immediate might just be that Schuyler isn't autistic. And that was the first thing that I pointed out to the organizer. But she assured me that it was fine, and that it was my experience with disability parenting that was important and the reason she wanted me to speak to her group.

I didn't mention the other thing, the fact that I'm not a Christian.

Well, no. I didn't mention it because while you may think whatever you like about my religious beliefs and the fact that I am not a Christian and am not raising my daughter to be one, the one thing you have to admit is true is that I have never pretended otherwise. I've never shied away from talking about my faith; my agnosticism has been an irritant to both my Christian and my non-believer friends alike.

My book surprised a lot of people (including me, honestly) because of the amount of ink I spilled discussing God. My Christian friends were disappointed that I didn't embrace Jesus at the end and instead described what was, at best, something of a truce with God. And my fellow heathens were puzzled by, well, the same thing. I may have been shaking my angry fists at the sky, but as my mother pointed out when she read it, at least I was still talking to God. We might be in need of couples counseling, but I hadn't dismissed the idea altogether.

Which is why I thought it sounded like a solid idea to talk to the Baptists. I haven't had very many positive dialogues with Christian groups like this in the past, but I'm not opposed to the idea. I assumed that the organizer of this book club had read the book and saw a deeper spiritual journey going on, and one that merited discussion with the faithful of her group.

Turns out, she hadn't read the book. Not yet.

As she made her way through the book, I could sense from her emails that she was troubled. I got several "I'm on page 154, and I've got some questions..." emails, which I tried to answer as best as I could. Particularly on the topic of my own beliefs, I said this:

For me as an agnostic, it is, in some ways, that lack of what others call "faith" that sustains me. It leaves open the possibility of something greater, something beyond my understanding, and it gives me hope that love is bigger than the cramped, mean world that we live in. And if I can't believe I know the nature or the origin of that love like the Christian believes, I also make room for it anyway. Which I suppose is its own kind of faith.
(...)
In the end, you know what's in your heart, and THAT'S the place where you keep your own faith. And while that sounds sort of lonely, I also find a great comfort in it.

Once we really began talking about it, her emails eventually turned into "I want to help you". I guess it's only because I'm a little slow that I didn't see the next thing coming.

I got uninvited to speak to her church's Autism Book Club.

I don't generally like to quote from private email, but since this event had already been publicized in advance (including by me) and my daughter's smiling face had already graced the club's website before being pulled without warning (before I was even officially uninvited), I feel like this one sentence of explanation is relevant. More to the point, it says a lot about, well, a lot.

"My book club is promoting Christianity as the answer to life's problems and that's what people are expecting when they walk in the door."

So there you go. Am I bitter? I don't like to think of myself as a bitter person, but yeah, I suppose I am, at least a little. Am I disappointed? Absolutely. But most of all, am I a little less likely to agree to a dialogue like this in the future? Does this feed my natural predisposition to distrust an agent of an organized Christian group? Yeah, it really does.

I have been asked on more than one occasion if I plan to teach Schuyler about Jesus, as if NOT doing so was somehow unAmerican. And I've been told that I am somehow limiting her future if I don't. Christians teach their kids what they believe, and while the best of them give them a choice, they still teach through their own biases. That's not even a bad thing. It's the nature of parenting, and it's part of how humans have built their tribes for thousands of years.

Well, for those questioners, I have good news, and I have bad news. The good news is that yes, we fully intend to teach Schuyler about Jesus Christ, among the other philosophers of history.

The bad news is that we intend to teach her about Christians, too. The good, the bad and the ugly. Because we're promoting information as the answer to life's problems.

Purple snowflake

Some things are hard to see when you are standing close to them. The passage of time masks growth and allows you to hold a tiny little baby and barely notice as she grows into an actual large human person thing.

And then you receive her fourth grade school portrait, taken by someone else at a place you never saw, on a day like any other when you put your baby girl on a bus and sent her into a world that sees her as a five foot tall preteen girl, You see the photo, and the person looking back at you is both the most familiar being in the world, and a mysterious stranger.

Schuyler is ten years old. I knew that, of course. But when I look at this photo of a girl who is not a baby and isn't even going to be a child much longer, the reality lands on me in a way that I guess it hadn't before.

In most ways that's no different from any father who has a hard time letting go of his little girl, I suppose. It's a cliche, I know. It's not one I particularly enjoy embodying, mostly because in matters of Schuyler and her well-being, I pride myself on being a fierce advocate for her. It's important, that position, the most important in my life, the one that really matters. I feel like it requires clarity and understanding and focus. Being all mushy-headed and "Aw, my widdle baby is all grown up, waah" feels like an idiotic, cartoonish distraction. I have no desire to be that familiar buffoon dad from any of a hundred forgettable sitcoms. And none of us really has the time for it, either.

As with all things Schuyler, however, it's not that simple. Last summer, I spoke briefly with a doctor and researcher who is familiar with both Schuyler and her monster; indeed, he is one of the world's top experts on disorders like hers. He pointed out how well Schuyler is doing and how unusual her manifestation of polymicrogyria really is. On one hand, her speech is affected, profoundly so. At the same time, she's completely ambulatory, can write and eat with only minor impediments, and appears to be cognitively high-functioning as well. She walks through the world like a perfectly normal little girl her age, and yet she's not like any other.

"I've never seen PMG manifest itself with quite such a narrow focus," he said. "Schuyler is probably unique in the whole world."

I knew that, I've always known that on some level, but to hear it put like that made it even more real. Every kid is different, I know; every child is a snowflake. But as far as that goes, Schuyler is wholly unique, like a purple snowflake.

Being Schuyler's father, then, isn't a job that always corresponds to precedence. She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it. She's like your kid in a lot of ways.

But Schuyler is also a ten year-old girl who has never had a conversation on the telephone with anyone other than her parents; actually, I don't think she's ever dialed a phone in her life. When she writes sentences using her spelling words for school, she composes pieces that work grammatically and convey meaning but also demonstrate that her understanding of language and the world is abstract and different, developed as it has in an internal world mostly her own. Schuyler has never whispered a secret in another little girl's ear. Indeed, she doesn't spend much time with other kids her age outside of school, which breaks my heart. She lives a sheltered life, of necessity, and I can feel how that's beginning to stifle her a little. But the ways out of that are complicated, and they require a level of peer acceptance that I simply can't control.

Schuyler is growing up, and she's doing so in a world that isn't completely sure what to do with her. It scares me, in part for reasons that are just those of any father in the world, but also for some that are literally mine and mine alone. In that respect, I'm a bit of a purple snowflake, too.

A Message from the Foundation for Children with Microcephaly

A special message for all my fellow polymicrogyria peeps and families with other related brain monsters (yo, what up?). This convention is a fantastic opportunity to meet with the top doctors in the field (including the brilliant Dr. William Dobyns; meet him and tell him how much you liked my book, just to see if his face twitches) as well as other families just like yours.

Bonus: I'll be there, so you can finally come punch me in the face if you like. Man, I'm a giver.

-----

To All of Our Special Stars & Their Families,

The Foundation for Children with Microcephaly has recently celebrated their 3rd birthday having official 501(c)(3) nonprofit status. We want to include our families in our celebration by offering Early Bird pricing again to register for our annual convention for three days only!

How it Works:
Download your registration form at www.childrenwithmicro.org/wearenotalone.html - Send in your completed registration form and payment POSTMARKED ON MAY 3, 4, or 5th and receive Early Bird pricing to register for our amazing annual convention. This special pricing can save a family $100 or more! In order to participate and qualify make sure that your envelope is POSTMARKED ON MAY 3, 4, or 5th!

Families who register on or after May 14th cannot be guaranteed an appointment with the world's leading physicians, but can be placed on a waiting list. There are still physician appointments available - send in your registration form to secure your child's doctor appointment!

You too can contribute to making this year's convention bigger and better! Let your local hospitals, doctors offices, & therapists know about FCM and our unique annual convention, "We Are Not Alone". They may know other children diagnosed with Microcephaly, Lissencephaly, Polymicrogyria or other closely related neurological disorders. Refer them to the website so they can let their patients know about our convention. We want this year's convention to be the biggest and best - we don't want any of our families to miss it because they didn't know about it! Thank you for helping us spread the word!

Feel free to call us with any questions or concerns! We still need help organizing the convention - if you have extra time on your hands and can contribute please let us know!

Thank you all for your support! I look forward to meeting you at "We Are Not Alone" - the 3rd Annual Microcephaly Convention! Remember... we also welcome families who have children diagnosed with Lissencephaly, Polymicrogyria and other closely related neurological disorders!

Best Wishes,

Jenni & Kaylee

Jenniffer Lewis
Founder / CEO
Foundation for Children with Microcephaly
Office: 623-476-7494
jenni@childrenwithmicro.org

Talking boxes on the tee-vee!

For those of you interested in AAC technology and the world of people like Schuyler, Samuel Sennott and his brilliant AAC app Proloquo2Go will be featured on The Doctors tomorrow (Friday, April 23).

The program deals specifically with autism, so there's sure to be lots of crazy talk and fighting and people throwing chairs at each other over vaccinations and gluten and alien abductions and all that.

Okay, well, probably not. But I'd watch that show for sure.

Spare the rod, redux

Every time I write about corporal punishment, I get more angry emails and comments than any other topic. Seriously. And keep in mind the number of times I've referred to special needs kids as "broken", or Easter as "Zombie Jesus Day". When I express my highly charged and controversial opinion that folks who incorporate physical violence against their kids into their parenting toolbox might want to rethink that particular approach, I get reactions. Some people like to suggest that I write about it specifically so that I'll get the reactions that I do, feeding off the conflict like some kind of emotional vampire.

Actually, that's not why I do it. I write about it because (and again, this might come across as radical liberal crazy talk) I believe quite strongly that hitting your kids is a somewhat fucked up thing to do.

Anyway, you've heard me talk about it before, so this time, I'll simply link to a story on NPR ("Spanking Leads To More Aggressive Kids", April 12, 2010). The report discusses a new study published by the journal Pediatrics, which showed that kids who were spanked more than twice a month as three-year-olds were considerably more likely to become aggressive five-year-olds than kids who weren't spanked.

So there you go. You may now fire up the "there's nothing wrong with a little swatty-poo on the hiney if it keeps my dear wee ones from running in front of a locomotive" and "I was spanked as a child and I turned out to be a model citizen who only occasionally shoots up a post office" comments, starting... NOW.

Making weird cool

How Schuyler passes the time at conferences
Originally uploaded by Citizen Rob

Despite my past work as an IT guy, it is an undeniable fact that I am not much of a technical person. It's worth noting that I did Mac support in the past, after all, and during the scary year and a half that I had to provide support for both Macs and PCs while at the Yale Med School, I mostly brought people skills to the table. I was pretty bad at the tech side of it, but I worked with nice people who were always ready to help me. So yeah, I was awful. I needed a lot of help.

It would be silly, then, for me to pretend that I had much to add to the tremendous amount written over the past week or so about the new Apple iPad. (I will say that as an ebook reader, I thought it was brilliant, even without digital ink, and I can see now why the Amazon folks have been such babies about the whole thing.) But there's one aspect of change that the iPad presents that I haven't read much about which I do think I can comment on, and that's in the field of assistive technology, specifically alternative communication.

Week before last, Schuyler and I attended an extraordinary AAC workshop at Vanderbilt University's Peabody College in Nashville. During the discussions over the two-day period I was there, it became clear to me that even in the past few years in which I've gone from a pain-in-the-ass parent to a published author and advocate (and yeah, a pain-in-the-ass parent still), the AAC world has changed. The basic concepts and the language approaches have remained constant, but both the technology and the design philosophies have advanced dramatically since 2005, when we first came on board.

In both those areas, I think the iPad has the potential to be a game changer for AAC. More than potential, actually. I think that for ambulatory users like Schuyler (which includes the huge population of individuals with autism, too), the changes being heralded by the iPad are inevitable.

The technical reasons are clear enough. The iPad uses the same touchscreen technology as Schuyler's speech device, so it's familiar. But it also brings a multi-use advantage, it gives her easy access to internet and ebooks and, well, everything else that has been well-documented by all the iPad hype. And that leads directly into something harder to quantify but still wildly important: the social piece.

Shortly after my book came out, we travelled to the American Speech Language Hearing Association's 2008 conference in Chicago, where I had the pleasure of speaking with Richard Ellenson. Richard was a successful ad executive and designer whose own son has severe verbal limitations due to cerebral palsy. When existing speech devices didn't work out for his son, Richard developed one that focused on fast, effective communication. The resulting device, the Tango, changed the way people thought about design and social integration of AAC for young users. The Tango wasn't particularly earth-shattering as a speech device, but its innovative design made it fit seamlessly into a contemporary kid's digital world.

"If you walk around this hall, you'll see a lot of impressive and wonderful innovation," Richard said to me at the ASHA exhibit hall. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"

AAC developers have been figuring that out. Schuyler's current device, her beloved Pinkessa, is a good example of the principle, and her enthusiasm for her device usage jumped considerably when she got it. But the iPad takes that social integration piece and marries it to a leap in technology and information access and, yes, to COOL. To you and me, cool is a pleasant luxury. To kids with disabilities, cool is elusive, and a powerful motivator.

If you know anything at all about AAC, you're aware that other big thinkers are way ahead of the game. One innovator I met in Chicago on that same trip is Samuel Sennott, and we've remained friends ever since. Sam developed an AAC app for the iPhone and iPod Touch called Proloquo2Go, and even when it was first released, it was clear that when the iPad came out, this app would be a natural fit. The moment the first iPad was sold, Samuel was ready to turn it into a Big Box of Words.

Schuyler's been playing around with Proloquo2Go, and she's shown some intuitive aptitude for it. We're all about giving her different and multiple options for communication, and we have been all along, even before we found AAC. Proloquo2Go may very well become one of the tools she uses regularly. But after five years with Schuyler's Big Box of Words and then Pinkessa, we remain deeply committed to the Prentke Romich Company and to Unity, the Minspeak-based language system that their devices run and which, I believe, gave Schuyler her chance at the kind of life where her monster doesn't get to call the shots and write her story for her.

So if I woke up tomorrow and found myself suddenly running PRC, the very first thing I'd do would be to develop an app for the iPad that would run Unity. I'd sell it on iTunes, and I wouldn't sell it cheaply. I'd do this because I would know that even if I sold it for hundreds of dollars, people would buy it, gratefully. Not every user, certainly, or even most of them. PRC's devices facilitate use by just about anyone, and I suspect that many of their users, perhaps most of them, are not ambulatory enough to use a iPad. Schuyler's device is ready to be used with a wheelchair mount, a head switch, an eye gaze system, or any other number of facilitations for varying degrees of disability. Companies like PRC will continue to make and sell their amazing devices because they are changing the lives of people every day, and giving them voices.

One day, and perhaps not that long from now, those users will want integrated devices, too. PRC already makes a speech device/PC hybrid, and I suspect other manufacturers do as well. But as of now, for the users who are ambulatory and capable of using a device like the iPad, there are suddenly options, not just to communicate and to be able to afford an AAC-ready device without third party funding, but also to join the rest of the world in using some very cool technology and subsequently being, in a tangible way, part of the very cool crowd.

Trust me, that option for coolness means more to people like Schuyler than it does to you and me.