May 29, 2010

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.

May 27, 2010

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.

May 24, 2010


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.

May 6, 2010

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.

May 3, 2010

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 - 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