January 30, 2011

“Is it better to out-monster the monster or to be quietly devoured?”

A monster named Sam.
Originally uploaded by Citizen Rob
I got a reasonable, respectfully worded comment (God, how refreshing) regarding my terminology which I felt deserved an equally reasonable and respectfully response. By the time I was finished, it had gotten far too long for a comment. And while I've written about this before, at length, it's an important point and probably deserves to be revisited from time to time. I felt like it certainly deserved its own post. So here we go...

"I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself. This goes against every instinct I have. I am an educator but not a parent.

"I don't think most people (with the always exceptional minority of crazies) would argue this point with you out of spite or with the goal of proving you wrong but rather out of concern for your daughter and a hope that sharing one's own experience can make a difference in the life of another child and family going through a familiar struggle.

"However, there is no point arguing about it as only time will tell how your daughter will feel about it. I do feel it is important to hear the experiences and opinions of adults who have grown up with disabilities or differences (whatever they may be). I think theirs is the most relevant voice in this debate."

Of course you are entitled to your opinion and your disagreement, and I thank you for posting. A few thoughts:

You're absolutely right, there is no predicting how Schuyler will feel about anything I've written about her and her condition. That point has been made in countless "How is she going to feel one day when she reads...?" posts and emails and criticisms. It's a valid point. You have to remember, however, that our feelings and opinions and reactions to Schuyler's situation aren't happening in a vacuum. I'm not writing one thing and saying another to her. From the very beginning, she has been raised to understand that no, she's not like other kids and yes, she has to work hard to overcome the obstacles that are in her way.

Schuyler knows that there's something wrong with her brain, she understands better than you or me or anyone else how true that is. She may choose to see it differently as she gets older, but she'll make that determination on her own. And she'll do so knowing that her parents love her and are inspired by her. The idea that she will one day read something I wrote and suddenly she'll know some dark secret about how I visualized her disorder is absurd. She already knows what the title of the book refers to; it was her metaphor originally, after all. We don't keep anything from her regarding her condition. THAT would be offensive, wildly so. Schuyler's not a delicate flower. She's a tough kid, because she has to be, and she's also a realistic one.

People acting out of concern for Schuyler are certainly within their rights to do so. Concern that she will be somehow wounded by an acknowledgement of her very real, very hard condition is frankly insulting to her, though. It sells her short. It denies her very real ability to face her condition head on.

"I do feel it is important to hear the experiences and opinions of adults who have grown up with disabilities or differences (whatever they may be). I think theirs is the most relevant voice in this debate."

Their voices are both absolutely relevant, and at the same time completely beside the point. I hope you don't think that after all this time, I haven't been listening to the opinions of persons with disabilities, along with their families and caregivers. But the thing you might not understand is that if I've heard from a hundred people, I've heard about a hundred different opinions and perspectives. There is no consensus. Well, of course there isn't.

For every person who is inspired by the Holland poem, there are equal numbers who find it to be condescending and ridiculous. For every person who depends on their faith in God to sustain them, there's an equal number who feel like that God has turned his back on their loved ones, or who have lost their faith altogether. For every person with a disability who finds comfort in People First Language, there are equal numbers who self-identify with terms like "cripple". Which of these voices should dictate how my family and I deal with Schuyler's disability?

"I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself. This goes against every instinct I have. I am an educator but not a parent."

I think this is an important point. I respect that my philosophy goes against your instincts. I am going to have to insist, however, that you likewise respect the fact that those educator's instincts are very different from those of a parent, particularly if you don't have children of your own. And I don't mean to condescend, either. But no matter how dedicated of an educator you may be, no matter how much time and energy and personal emotional investment you put into your work with our kids, there is a very real difference between our worlds.

You get to go home at the end of the day. You get to watch our kids grow older and leave your care. No matter how challenging or how impressive our kids' disabilities may seem to you, the fact remains that we live with them in ways that you simply don't. From the moment our kids' disabilities revealed themselves to us, entirely unanticipated, we live with the reality of those disabilities every minute of every day, and not for a year, or a few years, but for the rest of our lives. We don't just worry about whether our kids are going to successfully complete the school year. If our kids survive their hard childhoods, we then get to wonder who is going to take care of them when we die.

I hope you'll understand how something that is a part of our beloved, beautiful child can still be monstrous, for her and for me. In the end, Schuyler will come to her own conclusions about that word and about her condition. But she won't be surprised, and I seriously doubt she'll be offended. I don't give Schuyler sugar-coating or soft language.  I will always give her love, and the truth. Those may actually be the two most valuable things that I have for her.

January 21, 2011

"Beneath those stars is a universe of gliding monsters."

Pondering monsters
Originally uploaded by Citizen Rob

"...Heaven have mercy on us all - Presbyterians and Pagans alike - for we are all somehow dreadfully cracked about the head, and sadly need mending." -- Melville (Moby-Dick)


(Note to parents of kids with polymicrogyria: While I'm not normally one who worries a great deal about so-called "triggers", and while I'm writing this in large part on your behalf, I nevertheless feel like I should give you a heads up that I'm going to be talking about stuff that you are all-too-aware of but might not particularly enjoy reading about.)

I know I recently pledged to focus on the positive, and this post might not seem to honor that. But I actually think it does, because I believe clarity and respect are positive attributes, and I need to speak about those topics today.

I received a comment on this blog recently, from someone who has left critical comments before, and that's fine. I've posted them in the past because I really don't believe that it serves anyone, least of all me, to sanitize the comments left here. I've mentioned before that I will reject a comment if it is threatening or disparages anyone besides myself, or if it is clearly part of a coordinated campaign to dump on me for whatever reason. I think my comments become boring if they're all "go Rob" or "me too". But this comment I ultimately decided not to publish, because I felt like it could be offensive or hurtful to other family members of persons suffering from polymicrogyria, aka "Schuyler's monster".

But the remark stayed with me, if only because it's not even remotely the first time I've been confronted by the idea it contained. If I thought it represented one crank's opinion, then I would let it go. But the fact is, it doesn't, not by a long shot. So I guess I've changed my mind about posting it.
"What will become of your life when Schuyler's monster becomes her identity? Maybe she will grow to resent that you call what makes her a unique individual a 'monster' as if were a bad thing."
Like I said, the idea of Schuyler's polymicrogyria as a kind of unique personality trait rather than a serious and potentially dangerous affliction is hardly a new one. And I'm sure that I've made it even easier to make that claim. I recently said the following, after all:

Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.
I further explained that Schuyler's difference, her uniqueness, is something that I'm still thrilled by, and I consider it my distinct honor to be the person who gets to help lead her through a world that might not understand her difference, but which is nevertheless a much better, more vibrant place because of it.

So let me make this as clear as I can. I love Schuyler wildly, and I find her to be fascinating. I think she is by far the most interesting person I've ever known, and she's only eleven. And while I acknowledge that a huge part of that comes from the fact that I am her father, I am also aware that my fascination with the strange and wonderful person she is stems in no small part to the fact that I get to see into her unique world more than most people, more than anyone with the exception of Julie.

I think I've made that pretty clear in the past, in what, like 90% of what I write?

Here's the other thing, however. If I could have a chance to experience life with a Schuyler who was born free of her polymicrogyria, if I could go back in time and spend the past eleven years with a neurotypical version of Schuyler, I would do it in a heartbeat.

Because here's the thing that a statement like "you call what makes her a unique individual a 'monster' as if were a bad thing" is sugarcoating:

Polymicrogyria is a bad thing.

Polymicrogyria, in its many forms, affects the lives of its victims in various ways, and all of them are bad things. The difficulties with swallowing that consign some PMG kids to a lifetime of liquified foods and bouts with choking and life-threatening pneumonia are bad things. The lack of speech that robs PMG patients of significant early communication and stunts their development both intellectually and socially for the rest of their lives, that is a bad thing. The accompanying cerebral palsy that many patients experience, the difficulty in walking, that is a bad thing. The cognitive issues that can range from a developmental delay to severe intellectual disability, those issues are very bad things indeed, no matter how you spin them.

And the seizures, the ones that Schuyler is still in danger of developing, those terrifying episodes that strike some PMG patients at birth, those powerful electrical hurricanes swirling in those young, innocent brains that rob many very young polymicrogyria patients of their very lives before they reach their first birthdays, those are very very bad things. I follow polymicrogyria discussion boards, I see the notices that some young person has been killed by that thing that makes these kids such "unique individuals". I haven't experienced the pain that so many polymicrogyria families and those who battle other similar disorders like microcephaly and Angelman Syndrome have gone through, but I've witnessed the devastation that many of them endure.

And I never let myself forget, because it would be a crime of hubris to do so, that at any time, especially now as Schuyler's body and brain begin to undergo a whole new world of changes, our own world could be rocked, and that Schuyler's monster could grow some very big teeth.

So yeah. I feel comfortable calling it a monster, and while I celebrate Schuyler's individuality and always will, I also recognize that it has come with a price, one that she pays and will continue to pay all by herself. And I call it unfair, because it IS unfair, that she will not have the opportunity to choose her own individuality, her own path, without the unfeeling hand of that monster writing much of her narrative for her.

I understand how many people in the disability community choose to embrace disability rather than fight it. I get the Holland poem, and I understand that it means a lot to many people, even if I reject it. But I do reject it, as I reject the embrace of disability as just another thing that makes our kids and our loved ones who they are. It feels wrong to me, almost like a kind of fetishization of disease or disability.

I am not moved either way if you feel that way about your own afflicted family or your own disability. Everyone makes their own way as best as they can, and I respect that. But I find it offensive if you suggest that I should do the same, and that I should embrace the thing that, yes, breaks my child and which torments so many of her neuro-atypical brothers and sisters with such ferocity. It is a bad thing, as far as I am concerned, and I will call it a monster.

I started using the monster metaphor (stolen from Schuyler, if I'm being honest) long before I wrote a memoir, but it wasn't until an interviewer asked me about it during the press attention that the book generated after its release that I gave it much thought. I realized that it was a metaphor that I embraced, not for literary purposes but for personal ones. Like Schuyler, I needed to imagine polymicrogyria as a monster, because I can't fight a little girl's broken brain. But I can fight a monster. I can imagine myself going into battle against one of those.

And I don't even envision that fight as something heroic, either. Maybe I did, in the beginning, but not now. I'm not Perseus, heroically outsmarting and killing archaic beasts. I'm not St. George slaying the dragon.

If anything, I am more like Captain Ahab, fighting obsessively against a monster that I can never defeat. Like Ahab, I am aware of the futility, but I am also unable to turn away.

Schuyler's affliction, the one that hurts and kills other children, the one that touches her more gently than some but still colors her life so completely, it is a monster. If someone comes here to try to make a case that it's not, and that it is simply one of the innocent, beautiful little parts of her personality that make her the purple snowflake that she is, they should do so knowing that I will disagree, and I will find their disrespect for this bad thing to be offensive.

Melville's description of the sea ("...this velvet paw but conceals a remorseless fang") works pretty well for Schuyler's manifestation of polymicrogyria. It's not cute. It makes Schuyler's life hard, and moreover it devastates and even takes away the lives of others. I'm with Ahab on this one. I'll never quit.

Thus, I give up the spear.

January 19, 2011

"Hear angel trumpets and devil trombones..."

All parents have a narrative for their children. Some are blatant and perhaps a little horrible, like the ones on a television show that Julie and I have recently become addicted to, about the parents of kids who play sports and who live out their own past failures or glory days through their own children. The rest of us watch them and say, "How awful!" and "My little girl is going to chart her own course, she’ll decide what her future's going to be all about, not me." But in our secret hearts, we whisper, "I hope she plays the trombone...." (No, I really do. I suspect Julie's secret heart and mine are whispering different things.)

-- excerpt from Schuyler's Monster

I'm not usually so prescient...

The photographic evidence is a little misleading, I hasten to add here. Schuyler is not in fact playing the trombone, and I am realistic enough to admit that we might be over-reaching, or at the very least reaching in the wrong direction. But we're giving it a try.

In a few weeks, Schuyler and the rest of her fifth grade class will pile on buses and travel the roughly five hundred feet to the middle school (which sits on the other side of a soccer field from her elementary school) for their introduction to the middle school music programs.

(Note to school: When you're done putting the kids on the bus, perhaps after feeding them fried burritos, go to your office and Google "childhood obesity".)

(Note to readers, regarding my own raging hypocrisy and delivered in a Homer Simpson voice: Mmmmmmm. Fried burritos. Do they even serve those to kids anymore? Do I have to drive to a rural gas station to find one?)

But I digress.

Being the busybody parents that we are, Julie and I will be attending this field trip. Schuyler will be introduced to the music ensemble programs, including the orchestra and choir, both of which are areas poorly suited for her particular monster-affected abilities. String instruments require a level of finger dexterity that she would find extremely frustrating.

And choir? Well, yeah. Moving on.

Schuyler will also be visiting the band program, and this is an area where we think she just might find some possibilities. A couple of months ago, Schuyler and I drove down to San Antonio to visit with two of my closest friends. (You might remember the last time we went to visit them.) Jim is a band director, and an excellent one at that, at a high school in the area, and Kimberly directs the color guard for his program. We spent the day doing band stuff. I taught the trombones a master class in the morning (don't laugh, haters), and then we accompanied the band to a marching competition, followed by a football game that evening.

Schuyler had a fantastic time. She bonded with members of the color guard, referring to them as her sisters (she's actually stayed in touch with one of them via email), and she made friends with a young lady who played the tuba, which planted in Schuyler's head the fun (and appropriately Schuyler-weird) idea of playing the tuba one day. We carefully noted how the kids responded to Schuyler, and how lasting her impression of that day has been. The experience made us realize that beyond our own musical aspirations for Schuyler, which may or may not be reasonable, joining the band could very well provide Schuyler with a whole level of support, protection and most of all acceptance far beyond what she is likely to find amongst the general student population.

It's tricky, though, for a few reasons. For Schuyler, there are physical limitations from her polymicrogyria that present some daunting challenges. Her limited finger dexterity probably rules out woodwind instruments, for example, as does the issue she has with weak facial muscle tone. But that very weakness might also benefit from the techniques required to build a brass embouchure, and the trombone requires hand and wrist coordination, but not so much fingers. Her weak facial muscles probably rule out trumpet or horn, but tuba or trombone might be workable.

And I can teach those instruments to her. She already has a trombone. And Julie has a degree in music. If it works out, it feels like a natural fit.

Less within our control is the band program itself. I have, in my years as a trombonist, performed with a great many conductors. I've worked with and known some amazing directors who inspire me to this day, but I've also worked with some, well, you know. There's an old joke that sums up the rare but memorable experiences that many of us had from time to time. ("What's the difference between a bull and an orchestra? On a bull, the horns are in the front and the asshole is in the back.") As far as public school band directors go, there are a lot of them, I'd say most of them in fact, who love working with kids and who take their work as educators extremely seriously. But it's always that nasty handful, the ones who mostly cared about winning competitions and impressing their peers at the expense of students who needed more help, that former band nerds tell stories about years later. A great band director can change a kid's life; I had several who did just that for me. But the opposite is true as well.

I have no idea how Plano will shake out in this regard. The Plano schools are deeply committed to their special education students. And the Plano bands are extremely competitive. It really could go either way.

It's early to worry about that sort of thing now, though. For the time being, Schuyler is trying the trombone, contemplating her choices (percussion is high on her list as well), and dreaming of joining her sisters in the color guard.

As for me, I'm just imagining Schuyler surrounded by people who care for her and who would fiercely defend and encourage her. Because if there is one thing I've seen consistently from band kids, it is how they treat their peers with disabilities. It might be that band doesn't ultimately work out for Schuyler. But I can't tell you how much I hope it does, for reasons that mostly have very little to do with music.

January 10, 2011

Style Monster

Originally uploaded by Citizen Rob
One of the enduring mysteries of Schuyler is also one of the most interesting, and least quantifiable. How does Schuyler see herself? The little peeks through the curtains that we get from time to time show a little girl who simultaneously wants to be like every other little girl her age and yet is deeply in touch with her own beautiful strangeness.

Over the weekend, before the Wall of Wintery Death descended on North Texas (it is admittedly a short wall, but still), Schuyler asked me to take pictures of her. In eleven years on this planet, I do think this might actually be the first time she's ever done this. I've taken literally thousands of photographs of Schuyler, but her attitude toward me and my camera have always been ambivalent at best. One day she'll learn how to get a restraining order against me, and that will be that.

But this weekend, she wanted me to take photographs of her, and she had a very specific look that she wanted to capture, including the green wig resulting from her love of a character in the movie Scott Pilgrim vs. The World and the fingerless skater gloves that have become an indispensable part of her wardrobe. This was the look she wanted to capture, and I'll be damned if she didn't look awesome. Rather odd, and rather cool.

Schuyler had to make a college logo banner for school, for an assignment tying in with "College Week". (I'd make a remark about Plano parents already worrying about college for their fifth graders, except I suspect that is now the norm everywhere. Back in the day, I started worrying about college about halfway through my senior year, but that was probably a lack of planning and ambition all my own.) Schuyler hasn't had much interest in college, aside from the campuses where she has appeared for conferences like Vanderbilt and Auburn, so we had to explain some possibilities to her.

She eventually chose Yale ("because they helped me with my brain"), but she also decided, out of nowhere, that she wanted to go to school in China, because "it would be fun!" It was hard to argue with her logic, and she never wavered from this great idea, even after I told her that she might end up working in a factory making plastic Spongebobs for Happy Meals. She is immune to my cynicism.

Schuyler is building a very interesting and diverse self-image, one that emerges in her art and her stories and, I think most of all, in the dreams that she describes to us. It is, as it has been from the beginning, a view of herself constructed equally out of parts of this world and her own. We have a game we play now sometimes called "Real or Pretend", where I name something and she tells me whether it's real or imaginary, and her answers are surprisingly pragmatic. I was surprised to hear "pretend" when I mentioned mermaids and dragons and zombies and vampires (four of her favorites). She was delighted to learn that dinosaurs WEREN'T pretend, except when they are shown walking around in the modern world. But some of her answers were exactly what I expected, and secretly hoped for. Santa is real. Fairies are real. King Kong is definitely real.

The piece that fascinates me the most is how Schuyler incorporates her disability into her self-image. She's always identified with Ariel from The Little Mermaid, perhaps unsurprisingly; when asked why she loves this character so much, Schuyler touches her throat and then mimes the throwing away of her voice. But it's hard to know sometimes how much she wants to acknowledge her monster. She's reached a stage in her life when she doesn't want to use her speech device any more than she absolutely needs to, and when she does, she often insists on spelling out her words rather than using the icon sets.

But then she'll surprise us. The other day, while walking through a store, Schuyler saw a piece of pop art that she insisted she wanted for her room. When asked why, she mimed her wordlessness again. The art wasn't about being unable to speak. It wasn't an artistic treatise on mutism, not at all. But that was how Schuyler interpreted it, and now that it's hanging in her room, she goes back to look at it over and over. She seems very pleased with it, and with her own interpretation of its significance.

Schuyler is smart enough, and pragmatic enough, to understand that her disability is an integral part of who she is, and every now and then, she takes total ownership over it. But like everything else, she does it with style. Her own weird, wonderful style.

January 7, 2011

My Year of Golden Bees

Monster hat
Originally uploaded by Citizen Rob
So, 2011. What have you got?

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

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

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

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

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

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

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

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

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

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

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

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