June 28, 2007
I unearthed another video, taken during the summer of 2003, maybe a month after Schuyler was diagnosed with polymicrogyria. We drove up to the Magic Wings Butterfly Conservatory and Gardens in Massachusetts and got away from our new monster for an afternoon.
But of course, that's not true, and it was especially untrue at the time, when every little thing in the world seemed to mock us and remind us of how things had chhanged. It was an important event, enough so that I wrote about it in the book.
The thing I remember the most about that trip was that it was the first time I can recall Julie laughing after we received Schuyler's diagnosis.
(excerpt from Schuyler's Monster: A Father's Journey with his Wordless Daughter)
The three of us walked into the main conservatory room and stopped, holding our breaths. We were standing in a greenhouse, warm and full of plants and paths and a koi-filled pond with a burbling waterfall. Of course, there were butterflies, about four thousand of them. They flitted lazily through the air, landing on feeders or leaves or visitors. The visual effect was stunning. Taken one at a time, the butterflies were tranquil. When seen en masse, they became a frenzy of motion, completely silent but suggesting cacophony. We walked slowly down the paths, Julie and I silent in our thoughts as we had been for weeks, and Schuyler wide-eyed and breathless at the sight of so many butterflies.
I watched Julie carefully. I saw the sadness in her eyes beginning to melt away. She carried Schuyler and held her arm out, pointing at some of the impossibly big specimens and hoping one would take advantage of her offered hand and light there. I saw how in this place, maybe the most ethereal place we’d ever been, she wasn’t the mother of a broken child. Schuyler didn’t speak, but neither did we. Neither did anyone here.
We sat down on a bench and watched the butterflies swirl around us. One landed on Julie’s bare shoulder, and she laughed as its feet tickled her skin. A few minutes later, another landed on her forehead. Schuyler stayed still for as long as she could, but eventually she took to following them around as they flew lazily past, stalking one until another caught her attention.
When did I get so serious? I thought as I watched Schuyler and listened to Julie’s laugh. When did I turn into such a sad person?
I walked over to a little bronze fairy sculpture that held a feeder, consisting of a tiny glass bowl and a sponge soaked in sugar water. There were a few butterflies sitting on her hand, and as I held my camera out to try to get as close of a photo as I could, a giant Blue Morpho landed on the back of my hand. He was huge, and yet barely registered any weight at all. I held my breath as he slowly opened and closed his wings. A few seconds later, he took to the air.
I looked down to see Schuyler watching me, a curious little smile on her lips. Neither of us made a sound.
June 27, 2007
June 25, 2007
Schuyler is surprisingly unsentimental when she plays. Her toys are pretty evenly split between girly girl dolls (heavy on groovy Girls, and thankfully moving away from Barbie and her Disney ilk) and dinosaurs, monsters and general animal life. Schuyler loves her dolls, but she also understands the world and how it works well enough to know that if you are given a choice between being a ballerina and a Tyrannosaurus, it's a no brainer.
Schuyler possesses more charm than most people I've met, but I suspect she'd usually rather have big teeth and nasty claws. She's a bit of a realist that way.
June 20, 2007
I talk about it more over at the book site, but briefly, I received a preliminary version of the cover for Schuyler's Monster today. I think it's awesome, neither cutesy sweet nor Grim, Serious Tragedy Dad. And it has an actual visual effect on the cover, a subtle one that I think will give it just the sort of spark and pizzazz that you've probably come to expect from a parenting memoir.
In the book, I describe the impending birth of Schuyler as a mix of joy and "pure, unblinking, soul-freezing, 'boy-I-sure-am-glad-I-wore-my-brown-pants' terror". That's not a bad description of how I'm beginning to feel about this book being published, either.
June 17, 2007
Father's Day is a strange day, for the same reason that while I am looking forward to writing this book, I'm also much less sure than I was for Schuyler's Monster as to what exactly I'll be writing. Fatherhood is a murky concept, grown more-so in the post-Reagan era, where all the old rules have supposedly been chucked out the window and replaced with, well, nothing. Nothing consistent, anyway. The very first thing I talk about in the new book is the dearth of fathers in children's picture books, the ones for the very youngest. As they grow older, kids get Laura Ingalls Wilder's Pa and Harper Lee's Atticus Finch and such, but for the youngest, dad is strangely absent. Even Dr. Seuss pretty much leaves Pop out of his stories, unless it is to hop on him, poor bastard. The best father figure that the picture book set gets, in my opinion, is the Man with the Yellow Hat, and even he lets Curious George smoke an occasional stogie.
Motherhood has always been pretty clearly defined, for better and for worse, by society, but even during the Ward Cleaver days, fathers were always more easily defined by their absence (whether as a breadwinner or a deatbeat) than their presence. That hasn't changed as much as we'd like to think; according to Time Magazine, the typical American father still spends less than an hour a day with his kids.
As a result of all the confusion and fuzzy expectations, Father's Day ends up being, I think, a holiday without a template. In that way, it's one of my favorite holidays, and not just because I might get some stuff, swell though stuff may be. I like Father's Day because it's one that everyone just sort of makes up their own rules for.
I wanted to post something to wish all my fellow dads a happy Father's Day, but I especially wanted to send positive F-Day thoughts to all the special needs fathers out there, my fellow Shepherds of the Broken. I saw a post on another site about this subject, and at first it annoyed me. The gist of it seemed to be that while special needs fathers were rarely making decisions about their kid's care and were sort of standing in the background trying not to fuck up most of the time, we were nevertheless important components to the whole affair. It felt like a left-handed compliment.
But sometimes it feels like it might also be true. I know that the majority of parents I talk to about Shepherd topics tend to be women, for example, and when I attend meetings and functions for Schuyler's Box Class, I am usually the only father there. In fairness, one parent usually stays home to watch the kids, and I suspect at least some of the parents present would prefer we did that, too, rather than bringing Schuyler to all the meetings like we do. Still, it's almost always the mothers who end up at the meeting. I don't know, I can't speak for anyone out there but myself, but I think a lot of fathers have a naturally difficult time being taken seriously as parents under the best of circumstances. When the stakes go up with a broken child, we're not all suddenly transformed into Homer Simpson, but we might still find that societal barrier even harder to overcome.
I bulldoze right over it, and I do it with volume and scorched earth because I'm probably sort of an asshole. But I know how difficult it is to be a father of a child who is different, and I sympathize with every father out there who feels like they are in over their head, like a flight attendant trying to land a 747 without even Charleton Heston to help out.
To those dads, I want to say that the world needs you, more than ever, even if it treats you like morons by default. I hope that on Father's Day, at least, that world treats you like the heroes that you are.
June 14, 2007
June 13, 2007
Originally uploaded by Citizen Rob.
A passage from the chapter called "Diamondheart" jumped out at me, in which Lamott writes about her son, Sam:
"I can see myself so clearly in him, many of my worst traits, some of my goodness. I can also still see many of Sam's ages in him: New parents always grieve as their babies get bigger, because they cannot imagine the child will ever be so heartbreakingly cute and needy again. But Sam is a swirl of every age he's ever been, and all the new ones, like cotton candy, like the Milky Way."
When I heard that, I realized that the same is true of Schuyler, and no doubt of every other kid as well. When I look at her, I can see the baby she was, back when she was fat as a slug and covered with strange black hair, like a baby Wookiee. I can see her as a stumbling toddler, her body already beginning to lengthen, her transition from baby to girl beginning, and yet with those fat cheeks remaining. When I look at Schuyler, who has become a rambunctious, leggy tornado of a girl, I can see the baby whom I wore against my chest shortly after moving to Connecticut, shielding her impossibly tiny body from the bitter cold blowing in from Long Island Sound. She remains all those Schuylers to me. She is still the Chubbin.
Some days, some moments even, I can also see into the future. I can see, like the ghost images in a photograph in which the subject is moving too fast for the shutter speed, the shadow of a pretty teenager who speaks like a robot but still makes that face at boys and causes them, and me, heartbreak and despair. When we're out these days, I sometimes see teenaged girls who are embarrassed by their fathers, and others who still cling to them unashamedly, and I suspect that Schuyler will be a little of both. I can see her a decade from now, still dressing against the norms of the North Dallas elite girls and yet maintaining her alien cred, the oddball stunner who carries her robotic voice in a stylish bag and doesn't wait to be told how to be cool.
Sometimes I can even see Schuyler the young woman, the one who'll have a chance to go to college or go out into the world and make a place for herself on her own terms. In my most selfish dreams, Schuyler the young woman will be a writer, and she'll pick up the thread of chronicling her amazing and unpredictable life after I am no longer around to contribute.
I can't predict what Schuyler's life will be like. I can't even begin. But sometimes she'll look into me with those eyes, the eyes of a child and the eyes of a being not entirely of this world, forever a child and yet wise beyond her years already. When she does, I can see the person she'll grow up to be, the wild and broken and astonishing and perfect woman she was born to become. Schuyler looks more and more like her mother as she grows older, but I see so much of myself in those eyes, and in that crooked smile she flashes right before she does something that causes everyone in the room to hurriedly say, "No! Nonononononononono! Give me that! Holy crap..."
When people ask what I do, I tell them I'm a writer because I can truthfully say it without air quotes now, and I like that. But the truth is, I am Schuyler's father, her launchpad, and when I reach the end of my days, I hope she'll be standing there beside me to send me on my way.
She won't have words, but then, she and I so rarely need them.
June 8, 2007
They made calls.
Today when Julie picked up Schuyler, the site manager found her as she walked in the door and told how Schuyler had a very good day, how they had reintroduced her to the rest of the kids and had her demonstrate her device. Schuyler had shown them how the Big Box of Words worked, and used it to ask them questions. They were apparently very impressed. It sounded a little like the coffee cup all over again. I have no idea how things will be tomorrow, and I remain skeptical. But today, things were much, much different.
You'll read all about them in the book; they are all a part of its unexpected happy ending. But until such time as you can go throw a fistful of dollars at your local bookseller and walk out with my monstery tome in hand, just know that Schuyler's teachers are brilliant educators, but that's not why they are superheroes.
They are superheroes because they love Schuyler and never, ever, ever stop fighting for her. They are fiercely protective of her, like family.
It's not just her regular school year teachers, either. Her summer school teacher already knows Schuyler. In one of those fun coincidences that never feel like chance, her teacher for the summer was one of the assistants in the Box Class during Schuyler's first year in Plano. She called me a couple of weeks ago to tell me, and the absolute joy in her voice about seeing Schuyler again made me happy, and proud.
People dig my kid. I'm not always terribly concerned how they feel about me.
June 6, 2007
Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.
The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.
Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.
Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.
This gets fixed tomorrow, one way or another.
June 5, 2007
Schuyler has an incident like this about once a year, which is probably not too bad for a seven year-old. Today she got frustrated and kicked a kid, and then one of the program workers as well. I'm still not sure we've gotten the whole story, but she admitted that she kicked them on her device. She said the boy hurt her first, but she didn't have an explanation for kicking the staffer. She shrugged miserably when we asked her why she did it, because I don't think she understands having a temper, or how to respond to frustration.
It's a particular difficulty with nonverbal kids, especially when they are interacting with new people who don't understand how to communicate with her. That doesn't excuse her behavior, but this sort of thing doesn't just occur in a vacuum. The Big Box of Words requires patience from everyone, since it takes her some time to respond to questions or express what she's feeling. It's only the second day, but I'm getting the feeling that her summer program staff just doesn't quite get it yet.
Her classes have gone great, she got a glowing report today from her teacher. I was a little surprised since she's in class for four straight hours in the morning, which is a lot for a seven year-old. It would be a lot for me, come to think of it. But her class is fine. It's the after school program that's giving her fits, and we don't yet understand why.
One clue may have been the fact that they said she wouldn't use her device. That sent up a red flag because in the past, she's only balked at using the device when she was made to feel weird about using it, or when it was made unavailable to her. That's when she gets frustrated, when she can't be understood. She's in a situation now with people who can't understand any of her moonman words or her signs and who might not be encouraging her to use her device. That doesn't leave her with much, and that's when she typically feels trapped and lashes out.
Well, it's only the second day. She promised to apologize on her device to the people she kicked and to be the very best little girl she can be tomorrow, and I believe that she'll do just that. My friend Tracy wrote once that Schuyler's sorrow at disappointing me was a powerful thing, and Julie said the same thing tonight. I don't know if it's a "Daddy's little girl" thing or what, but it's a little heartbreaking.
After our long talk and mutual agreement on her punishment this evening and what would happen tomorrow if things don't improve, she looked at me sadly and started punching buttons on her device.
"I love you," she said.
"I love you, too, Schuyler," I said. "I love you so, so much."
She smiled for the first time all evening and climbed out of her chair. She came over and put her arms around my neck and hugged me as hard as she's ever hugged me, and for a long time.
All the people out there who feel like we need to be disciplining her physically (and I'm sure I'll hear from them again like I did last summer; maybe they'll pronounce her name correctly this time when they call me on the phone), they have no idea.
I'll never raise a hand to her, ever. I don't think either of us would be able to bear it.
June 4, 2007
I have to say, however, that I don't have much faith that the current cease-fire in the Action Plan(!) skirmish is going to hold, particularly since I haven't heard back from Schuyler's doctor in Chicago. (Could it be that they are busy taking care of actual patients? How rude is that?) I predict a "So where's the Action Plan(!)? For the love of all that is holy, WHERE IS IT???" conversation when we go to pick her up.
I think I've decided on my next writing project, now that the book is off to St. Martin's. Every time Schuyler starts some new project, we go through some variation of this song and dance. The exception was her Box Class, but that was unique in that they had a lot of information on her prior to her arrival. Also, they are superheroes.
Anyway, I've decided that my next project should be a User's Manual for Schuyler, v1.0. Or perhaps a Guide to the Care and Feeding of Schuylers. (There's a joke that I'm showing some rare restraint by not making here. Email me if you can guess what it is.)
It'll have the necessary medical information, perhaps even a plan, you know? For action! It'll also have material about how she actually operates, what she likes, what she hates, what ASL signs she uses, what to do if internet weirdos (and perhaps book-reading weirdos) try to steal her and eat her, etc. All the things you need to know, with some jokes and fun photos, just as an incentive to actually read it.
The thing about Schuyler is yes, she's a mysterious little girl. But you know what? She's not THAT mysterious, not if you bother to get to know her.
June 3, 2007
Schuyler and I sat in front of the window, watching the trees bending and the lightning flashing. I've always said that Schuyler is fearless, and that is mostly true, but the two exceptions are swimming in deep water, and thunder. She's not afraid of thunder, exactly. It just makes her nervous.
We sat and held onto each other and pretended to be scared and shivery every time a clap of thunder rolled by. I asked Schuyler what she thought caused thunder, and she had three theories, expressed through signs, mime and Martian since she didn't want to wake up Julie with her device.
Her first theory was that the thunder was pirates firing their cannons.
She then rejected that idea and decided that the thunder was the sound of a big fat man beating on his belly.
She finally discarded both of those theories and decided, without muchin the way of explanation, that the thunder was caused by our pug, Lulu.
I sent off my manuscript with all its edits yesterday, along with new photos that may appear in the book. If this version passes muster, it's off to the legal department to see how many ways I might get sued, and then the real fun begins. Galleys, reviews, publication, remainders, obscurity and death.
Or something like that.
You know how sometimes you feel like telling a long story, and then other times, when it's the same old crappy story on a brand new shiny day, you feel like just saying "Oh, fuck THAT" and never talking about it ever again?
We had a run-in with Schuyler's after school program, now her summer program, on Friday. On Friday at about 5pm, to be precise, when it was determined by the site director that Schuyler did not have the proper forms, in particular a "Medical Action Plan" (an animal whom we'd never heard of before), and would not be able to start the program on Monday, thankyouhaveaniceweekendbye.
Oh, fuck THAT.
I think I jumped right into Angry Dad mode, without much of the usual polite buildup. I don't feel apologetic or regretful, though. Julie spoke to the site director and called me to tell me the whole story, including how she felt like she had been shut down. These were the rules, it was our fault for not following them (even if we were never told about any of this, which apparently we should have been when we registered and, oh yeah, PAID for it), this is the way it was going to be, no exceptions, bye.
One thing that Shepherds of the Broken who have been in the fight for a while can tell you is this: the first answer you get from any program is almost never the final answer. The first answer is almost always the answer that provides the least effort for the program. That's not always a bad thing; most schools are overextended and need to streamline their workload as much as possible.
But in this case, it was at Schuyler's expense.
I called the program myself and was irritated to find that no one was answering the phone, because of course, it was after hours. This bomb had just been chucked at us on the way out the door. Fortunately for us, however, the site director also needed to fax the required form to Julie at work, and the fax hadn't gone through correctly. When she called to find out what was wrong, Julie asked her to call me because I was really pretty upset by this whole thing.
"Why, so he can yell at me?" the woman asked. "I don't need that."
I called her personal voicemail and mentioned that since she didn't want to talk to me on the phone, we could meet on Monday when we came to pick up Schuyler, who would in fact be attending that day. She called me back shortly thereafter.
So here's the short version. When a special needs child attends this particular program (which is connected with the school district but is apparently more autonomous than I'd thought), the program requires that a Medical Action Plan (in my head, it has an exclamation point at the end) must be in place with specific instructions on what to do in the case of an emergency. Let me say right now that I am in 100% agreement with this policy. Well, obviously.
The problem I had was that Schuyler has attended this program for the past year now. The only change is that she'll be at a different campus for the summer program. It's the same program, and the requirement for the Medical Action Plan(!) has applied all along.
I was slightly proud of myself for thinking of this particular argument early in the conversation, because it stopped her cold.
"So my problem isn't with the action plan," I said to her. "I think the bigger issue is why she was allowed to attend all year without one in place. If this plan is as important as you say it is, then it seems like your program has been operating in a pretty serious violation of the rules. Maybe the law, too."
In retrospect, I think I put her in a pretty difficult position. Either the Action Plan(!) is a very serious requirement and the program has been operating dangerously without one for almost a year, or it's one more piece of idiotic paperwork, and everyone can settle down and deal with Schuyler like a human child rather than a case number while we get the stupid Medical Action Plan(!!!) filled out for them. By the time we got off the phone (on polite terms, which was sort of a miracle considering what a dick I was at the beginning), we'd all agreed on the second option. Schuyler will attend the program, and we'll get the plan from her doctor in Chicago as soon as we can.
The thing that I think is important to note here is that the argument that Schuyler was somehow being neglected before is completely bogus. The program site director at her regular school is awesome and went to great lengths to meet with Schuyler's teachers and the school nurse. She became an expert in Schuyler's special needs, which at this point are not actually all that special.
Schuyler has some minor dietary restrictions for her swallowing disorder, meaning that things like crackers, chips, hard cookies and hard candy are out. It's also good to know the ASL sign for "potty", because if you make her stop what she's doing and spell it out on her device, things are probably going to end sadly. When the girl's got to go, she's got to go. And of course, there's always the (at this point theoretical) possibility of seizures, Schuyler's own personal Sword of Damocles.
So the site director at Schuyler's school knows all this, she's made sure that the whole team knows it, and it has been a very safe environment for Schuyler as a result. Did the site director fail to file an actual Medical Action Plan(!), or did the program fail to send that plan over to the new campus?
I have no idea, and really, it's not my problem. We made sure the team at her regular school knew what she needed, and Julie called the summer site director to personally make sure that her summer team knew what to do as well. They didn't, and they freaked out, and they decided that the easiest course of action was to simply refuse services to Schuyler until their bureaucratic requirements were satisfied.
Oh, fuck THAT.