April 26, 2011

Of Monsters and Monkeys

Schuyler invited me into her room to hear a story she was going to tell some of her toy friends. I grabbed the Flip camera and just started shooting.

What you have here is basically about ten minutes of Schuyler being Schuyler, assembling her rogue's gallery of monsters and monkeys and making up stories about dinosaurs and sock monkeys. She didn't actually tell much of a story, aside from an exciting sock monkey fight sequence towards the end, but it's still a good example of what it is like to listen to Schuyler express herself without much in the way of prompting or direction.

I thought about trying to do subtitles, since Julie and I together can decipher most of it, but I don't know. Part of the reality of visiting Schuyler's world, both the charm and the frustration, is the work that you as the listener must do to understand and follow her.

So instead I give you the first line of her story. It makes sense, if you think like Schuyler, which I try to do every day, in my own way.

"One thousand years ago, dinosaurs were dead. They were SO white, like this dinosaur."

April 24, 2011

Escape in chalk

Tomorrow, we see Schuyler's neurologist.

Today, sidewalk chalk.

Julie drew tulips.

I drew a grass monster.

April 20, 2011


I have a love/hate relationship with spring in Texas.

I love it for the storms that roll in during the late afternoons, setting off a flurry of emailed warnings and text messages and little tornado icons in the corner of every local television broadcast. Giant walls of clouds shamble in from the west, flashing lightning and setting off car alarms with great grumbles of thunder. The tornado sirens wail in the distance, cranking up a few seconds apart as they're triggered in town after town, running from Frisco and Allen to the north, down through Plano and Richardson, slightly out of sync so that they sound like a choir of tormented ghosts. After a while, the wailing stops, and for a brief moment I am disappointed that the danger is over.

But no, the siren has stopped so that the monstrous voice can intone, clearly and with divine authority, "Seek shelter immediately! Seek shelter immediately!" And suddenly I am thrilled again, feeling that tingle that suggests that the world might still be an exciting place, and it might carry danger and death, or it might just be full of lightning and thunder and waves of horizontal rain from time to time. I ignore the mathematics of tornados, because if I think about the incredibly remote chances of actually experiencing one, even in Texas, then I'll be aware that it really is just rain, and thunder and lightning, full of sound and fury, signifying nothing.

I love the storms, as only a renter can.

I kind of hate spring, too.

Spring is the season of IEP meetings, where we stretch Schuyler's monster out on a table and examine it, looking for signs of weakness that might be exploited, places where its hide might be pierced, even though every year we find that it is as inpenetrable as ever. Every spring, I find the enthusiasm and the "Why not?" of Schuyler's school has diminished just a little more, and the pragmatism and the downturned eyes and the "Here's why not..." has grown a little stronger in the passing year.

No one's talking about graduation anymore.

Spring is the season of the TAKS test, the Texas manifestation of No Child Left Alive, which for special needs kids invariably means "the test that you spend weeks preparing for even though you are probably going to fail it and no one believes you can pass it anyway, but Jesus Howard Christ, we are going to be ready for this motherfucker anyway, and sorry all your typical friends passed it but you didn't, but then again, you're DIFFERENT, and this is one more solid illustration of exactly how much that ISN'T a good thing, because you're not in Holland, you're in a place where you are measured against neurotypical kids, and it's not fair but it's the law, so let's take this shitty test, shall we?"

Schuyler did not pass the reading or math portions of the TAKS, we learned today. She didn't even come close.

I didn't tell her. I'm not sure if I ever will.

Well, I'm not so much worried about what comes next. Julie called the school principal (because we are Those Parents) a few minutes after I got the call from Schuyler's home room teacher telling me the bad TAKS news, in tones suggesting that the very best moment she could imagine in her future might be the one in which this phone call was over. The principal was supportive and reassuring, as she has always been.

I don't believe the school would try to hold Schuyler back from moving on to the next grade level, especially since I believe that their goals for her have shifted subtly from "she's going to graduate one day" to something more like "we're going to do the very best we can to teach her by exposing her as much information as we can, and maybe, just maybe, she'll absorb enough that her future will be, well, we don't know exactly, but maybe something good". They've become realists, in ways that we as Schuyler's Official Designated Overbelievers cannot.

I hate the test because it re-enforces something that Schuyler already knows. It tells her not to overbelieve. It tells her, and her teachers, and us, and I hope she refuses to listen but I wonder.

Spring is the season when we talk about all these things, and so in a very real sense, it's the season in which I despair.

This spring has been harder than most, with the added factor of possible seizures, the ones I've written about so much that I just don't want to anymore, and which will hopefully get THEIR spring portrait taken soon by Schuyler's neurologist. It's been hard for Schuyler because she's scared and frustrated and confused, she doesn't understand what is (maybe) happening to her body and her brain, which she thinks is mad at her. But her anxiety passes, and she finds joy in the world around her. She is anxiety-free ninety percent of the time, which I find comforting, even though last year it was probably ninety-five percent. I try not to project what next spring's percentage might be.

Of my own percentages, I dare not stop and take measure. Over the past six months or so, I have found that if I keep moving, if I just focus on Schuyler and try to toss the occasional bone to the dogs in my head so they don't bark so much, I'm okay. And that's enough for now.

One thing I love about spring is how it promises summer. Schuyler becomes impatient with school in a way that is extremely typical, I suspect. She begins asking about the pool, which inexplicably won't open for another few weeks, and when we walk through Target, she gravitates toward the swim suits, begging for a new one even though she simply cannot choose just one that she likes. Her skin already starts tanning, although this year she is left with strange little pale rings on her arms from the wristbands that she wears to discreetly address her drooling. She sees commercials on television for the newest roller coaster at Six Flags and says "Oh yeah!" before breathlessly begging to go, soon, tomorrow, now.

Schuyler's feelings about spring are pretty simple. She experiences spring and she thinks of the future. Unlike me, it doesn't scare the hell out of her. In that respect, I envy her, deeply.

April 12, 2011

Quiet Girl

I would liken you
To a night without stars
Were it not for your eyes.
I would liken you
To a sleep without dreams
Were it not for your songs.

-- Langston Hughes

April 10, 2011

Waiting for Polly

Originally uploaded by Citizen Rob
This is what we do now. We watch Schuyler, and we wait for signs that she's having absence seizures, or not having seizures, we wait to know if she's going to be okay, or in what ways she's not. This is who we are now, both of us. I'm not an author, I'm not a father or a husband or a friend or whatever else. I am a watcher. It feels like it's all I do now. And honestly, at least for the past few months, it really sort of is.

Tonight, I saw Schuyler have an absence seizure, I think. I don't know, because without an EEG being administered, and administered at the right moment, we can't know for sure. But tonight, as we shopped at Target, I looked down and noticed Schuyler staring in front of her, mostly motionless except for a very very slight movement of her mouth that I may very well have imagined. I only observed her staring for maybe five or ten seconds, but she could have been doing it for a little longer. After she came back from whatever place she was visiting, she was drooly and crabby and seemed confused for a few minutes. Then she shook it off. Shortly after that, she suddenly needed to go to the bathroom. She went again before we left the store.

Later, after we got home, she suddenly ran to the bathroom again, this time having a very small accident before she got there. Neither of us were watching her that time, but based on her behavior after, I suspect she probably had another absence seizure.

Schuyler is confused by the ways that her body is suddenly betraying her. She doesn't understand it. Just the early puberty stuff alone is blowing her mind, after all. Add to that the further loss of control that she seems to be having, and you end up with a little girl who is frustrated and frightened, and who, when pressed for information on what she perceives, lacks the descriptive language to explain.

"My head feels weird."

"It's my little monster."

"My brain is mad at me."

Well, I don't know. Perhaps she does a fine job of explaining, in her own way.

In a few weeks, Schuyler will visit her neurologist, and hopefully she'll get another EEG, perhaps another extended weekend one where they glue a bunch of wires to her head and wait, like a hunter watching a trap from a blind. That's the best we can hope for, that something will happen during this tight window of opportunity. An author friend who has experience with absence seizures brilliantly described it as "like trying to take a polaroid of a ghost". That's perfect.

And it may all be nothing. It's feeling less and less like nothing, but then, watching for this particular phantom is making us twitchy and paranoid. We find ourselves falling into the oldest cliche, repeated endlessly by countless parents of broken children.

"We just want an answer, even if it's bad."

We said that before, when we had no idea of the severity of Schuyler's monster, and ultimately we didn't end up feeling quite that relieved once we got that answer. If this new monster introduces itself one day with a full blown grand mal seizure, I guarantee we won't be grateful to KNOW then, either. But the uncertainty wears you down. The watching, and the waiting.

Do you know what I miss? I miss being a funny writer. There was a time, long before all this, long before I discovered what I would be writing about and worrying about for the remainder of my life, when I just wrote funny stuff. Jesus Howard Christ, I miss those days.

April 6, 2011

Pretend and not pretend

R & S
Originally uploaded by Citizen Rob
The past seven days have been... well, up and down.

Last week, the three of us flew to Nashville for the Second Augmentative and Alternative Communication (AAC) Workshop at the Kennedy Center at Vanderbilt University. Julie and I were fortunate enough to speak on a panel of some extraordinary parents, and once again the conference was transformative for us all. We left feeling enlightened, valued, and perhaps even daring to be hopeful.

The day after we returned, Schuyler had another accident at school. She had yet another one today.

"I felt weird," she told me today as I asked her about it.

"You felt weird?" I repeated back to her, which is how you communicate verbally with Schuyler.

"Yeah," she said. "I felt weird in my head." She paused for a moment, considering. Finally she said, "I think it was Polly. The little monster in my head."

I have no idea what's going on, or how much her issues are related to her polymicrogyria or absence seizures that may or may not be happening. Before the end of the month, she will have seen a doctor and a neurologist. Maybe we'll have some answers. Perhaps not. Probably we'll have different questions.

Schuyler admitted to me that she is a little scared by this. She said she was a little scared, but also that she is Drummer Girl, and Drummer Girl isn't afraid of anything, so I guess that's her new talisman. We drove around listening to loud drum music (mostly music from Bear McCreary's score to Battlestar Galactica, which contains some of the coolest and most fearless percussion music I've ever heard) and picked up Tron from the RedBox so Schuyler could watch the cool girl with her same haircut who kicks ass. We didn't talk about her accident or her fear any further. Because Drummer Girl isn't afraid of tiny monsters that make her wet her pants.

I find it interesting that she has latched on to this idea of Polly. Schuyler does pretty well with metaphors, maybe because so much of what she experiences in her world is hard to explain. It's a little less confusing when she can believe in the invisible and the imaginary, even though she will also tell you that fairies and monsters are pretend. ("Dinosaurs were real, but they are pretend now," she informed me the other day.) She is comforted by them even as she knows they aren't real. Schuyler doesn't need Jesus. She's got Tinkerbell, and King Kong, and she's got Polly, who is the enemy but also her constant companion.

While we were in Nashville, Schuyler asked Julie and I to draw monsters for us. Julie drew something like an octopus with a chicken beak and antennas that shoot lightning, while I opted for the old school grumpy sea monster. Schuyler liked them both and displayed them prominently in the hotel room the whole weekend.

She liked them for what they were, but of course, they weren't her monsters. Hers is invisible, pretend and yet not pretend, and ultimately unknowable. We know it by its footprints, by the chaos it leaves behind.

April 4, 2011

The Season for Overbelieving

Travels with Jasper
Originally uploaded by Citizen Rob
Today, Schuyler began taking the TAKS test. (This is the Texas Assessment of Knowledge and Skills, our version of the No Child Left Behind nonsense.)

I've talked about this before.

If you want to know my feelings about kids with disabilities and standardized testing, follow that link and read what I wrote two years ago. I don't think my outlook has changed on this at all; indeed, they didn't change even after Schuyler passed part of the test.

It's a cliche, perhaps, but this week, I feel like my child is being left behind. At least she won't have a lot of homework. More time for self-esteem repair, I suppose. Since everyone involved in education is bitching about NCLB this time of year, I'll leave it at that.

I've sort of come to dread the spring as far as Schuyler's school experience is concerned. It's a one-two punch of TAKS testing (and all its accompanying anxiety) and the following meeting to discuss Schuyler's IEP for the following year. Last year, the school district's educational diagnostician asked for (and was denied) our permission to administer a new cognition measurement test (basically, an IQ test) to Schuyler. She even admitted, without hesitation, that she believed such a test would reveal Schuyler to fall within the range associated with mental retardation (or whatever she calls it now, post-Rosa's Law).

That wasn't a good IEP.

I wrote about this last year, in a post titled "Truth can be a monster, too", and looking back on it now, I think it was probably one of the more important things I've written publicly about Schuyler's academic situation. It certainly paints a more accurate picture than what I wrote in my book as I tried to look into her future.

At that time, I was talking about Schuyler being mainstreamed at an age-appropriate level and one day joining her typical classmates and graduating from high school with them. But all of that was a lie, albeit an unintentional one. Schuyler's inclusion was something of a Potemkin village, and we happily allowed ourselves to buy into the fiction for far too long. We believed what we wanted to believe, to our utter shame.

"Truth can be a monster, too" ended like this, with some of the hardest words I think I ever had to write, hardest of all because they might have been loaded with frustration and sadness, but they were fat with truth, too:

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.

A year later, I'm not sure how much has changed. I never made peace with the idea that Schuyler might be MR, and in fact I believe more than ever that she is not. Am I overbelieving in her, as I also expressed last spring? Perhaps, but I still think that as her father and one of her two chief advocates, overbelieving in Schuyler is exactly appropriate. Furthermore, and this is where there is perhaps the potential for disagreement amongst the members of the IEP team, I believe that overbelieving is right and appropriate for every single teacher and therapist who works with her. Every single one of them. Period.

I've already met with someone who will, I hope, be key to some success for Schuyler. A couple of weeks ago, I picked her up from school and took her to meet the band director at her new middle school, and after evaluating Schuyler's abilities on a few different possible choices, it was decided that percussion will be the best choice. Schuyler the drummer girl. Just imagine it.

I like this band director; I'm hopeful that she will operate in a spot somewhere between the two extremes of "I have contest coming up, I don't have time to coddle a special ed student" (there's some of that out there, I'm sorry to say) on one hand, and on the other, a brand of "inclusion" that involves parking the kid with the disability in the corner with a chair and a rubber triangle. I think this director is going to be demanding of Schuyler and is going to help her learn how to focus. I think she's going to give Schuyler a chance. She might even overbelieve just a little.

At this year's IEP, we'll be changing Schuyler's team dramatically. This will be her last IEP meeting at the school that has, for all our recent disagreement, taken better care of Schuyler than most broken children ever experience. But after last year's attempt to stamp Schuyler as MR by the diagnostician, with the tacit agreement of other members of the team, there has been a serious divergence between the school's philosophy for Schuyler and ours.

Will that continue with next year's team? Or can we assemble a team of overbelievers, a group that will be less interested in trying to determine what Schuyler is incapable of doing and instead try to determine what she already knows and how to build from there?

I live in hope. As Shakespeare says, all men, I hope, live so.