The last post generated a lot of comments and a few questions about Schuyler's future development. I really appreciate those questions, enough so that instead of answering them in my comments, I thought I'd pick one of them and answer it here. Hopefully it'll cover other questions some of you have had or may have as well, although with Schuyler and her monster, there are always more questions.
---
Given that she is now able to say "no," how hopeful are you that she will gain more consonants?
"Hopeful" is a tricky word, because some mornings after dreaming of Schuyler talking to me, before I wake up completely, I am entirely hopeful that she'll greet me with a kiss and a "Good morning, Daddy!" Those waking moments are almost happy enough to compensate for the hard reality that lands a few seconds later. Almost, sometimes.
But realistically? Not much has changed in the area of hard consonants, or her ability to use any consonants at all. She has had N and M all along. What she has been unable to do until now was appropriately place them in their proper places in words. She occasionally says "mommy", too, which is new. Until the past six months or so, when she would say "no", it came out as "mo", but she couldn't say "mommy". She had some of the soft consonants, but was unable to process their placement.
Unfortunately, she has no hard consonants and never has. Will she one day be able to form them? Obviously we'd like to hope so, but polymicrogyria is a huge mystery to everyone who has ever studied it or dealt with it. Keep in mind that even though her speech sounds to some as if it is physically impaired, it is in fact entirely a result of her neurological condition. In some ways, that suggests a hopeful future, since there's nothing physically keeping those sounds from being formed. But it also puts the solution in the court of Schuyler's brain, and that brain has never been her best friend.
The brain is a powerful and mysterious organ, the most important but easily the least understood part of the human body. On one hand, when you hear Schuyler's speech and you see how in some ways, it seems so close to normal human speech, the logical question feels like it should be "So why can't she bridge that last bit and eventually speak normally?" That's the late-at-night question, the one that haunts us all.
But when you look at the MRI scans taken four years ago this month and you see and understand just how profoundly affected her brain really is and how much real estate the monster has claimed, the unanswerable question becomes "How did she ever get this far in the first place?" Schuyler has achieved so much to get to where she is that it seems almost unfair to deny her that last step. Like Pinocchio, there seems to be only one wish left to make for her, such a little thing, a trifling wish.
And realistically, from a medical and neurological perspective, one that is very unlikely to come true.
In some ways she's come further than we'd ever dared to hope, which is wonderful. But in order for her to be truly intelligible in her speech, she would have to develop some sounds that she has never made before.
Are we hopeful? Of course. Her achievement now has been in taking sounds she's had all along (soft consonants like M and N) and using them appropriately, and it's not a small achievement at all. But the hard truth is that even just finding the rest of her consonants would be an extraordinary event.
Schuyler's real achievement has not been in beating the odds and defeating her monster, but in sneaking around it and making her own way. It's not that we think she's going to talk one day (although obviously that would be everyone's dream come true; literally, in my case), but that she will continue to make herself understood however she can. I like to think that in her use of inflection and pitch with her actual voice and with her developing skills on her device, she'll continue to develop a voice that may be different from the rest of us but will be both effective and uniquely her own.
I don't believe in miracles, but I beieve in Schuyler.
July 10, 2007
July 9, 2007
Schuyler speaks
Over the weekend, I purchased a cool new microphone so that I can do some promotional book stuff. It has a very funky appearance that caught Schuyler's eye as soon as I set it up, and she was captivated by the sound of her voice as we played around with it.
As we were getting ready to go to her summer program this morning, she pointed to the microphone and then herself and made her little sign for "please". This short recording is what resulted.
I thought I'd share this with you because it occurred to me that while I've shown Schuyler using her Big Box of Words before, I'm not sure if I've ever actually shared what she sounds like when she speaks. I'm not sure you can really understand who she is without hearing her voice.
And yes, you're hearing correctly. She can now say the word "no", at least much of the time. She's already rendered parts of my book obsolete, and I couldn't be happier about that.
You can hear her monster here, how it wipes away her consonants and leaves her largely unintelligible, but I hope you can also hear how hard she tries and how many of her words can become clear through context. Julie and I can understand a great deal of what she says, so perhaps her words aren't as clear to you as they are to me, I can't say. I can't see that forest; I'm perhaps too deeply in love with the trees.
One thing that I hope is obvious to anyone, however, is how clearly she must be hearing her words in her head. More than that, I hope you can feel how much of her vibrant personality comes through in her speech, and how much joy she manages to extract from a world that doesn't easily give much up for her in return.
Schuyler speaks (mp3, 1.3 MB)
As we were getting ready to go to her summer program this morning, she pointed to the microphone and then herself and made her little sign for "please". This short recording is what resulted.
I thought I'd share this with you because it occurred to me that while I've shown Schuyler using her Big Box of Words before, I'm not sure if I've ever actually shared what she sounds like when she speaks. I'm not sure you can really understand who she is without hearing her voice.
And yes, you're hearing correctly. She can now say the word "no", at least much of the time. She's already rendered parts of my book obsolete, and I couldn't be happier about that.
You can hear her monster here, how it wipes away her consonants and leaves her largely unintelligible, but I hope you can also hear how hard she tries and how many of her words can become clear through context. Julie and I can understand a great deal of what she says, so perhaps her words aren't as clear to you as they are to me, I can't say. I can't see that forest; I'm perhaps too deeply in love with the trees.
One thing that I hope is obvious to anyone, however, is how clearly she must be hearing her words in her head. More than that, I hope you can feel how much of her vibrant personality comes through in her speech, and how much joy she manages to extract from a world that doesn't easily give much up for her in return.
Schuyler speaks (mp3, 1.3 MB)
July 8, 2007
Programming note
This isn't going to affect very many people, but I'm busy tweaking the book site over at SchuylersMonster.com, and one of the things I'm going to do soon is get rid of the book blog over there. It doesn't get much traffic, it's off-topic from the rest of the site, which is about the book as it relates to its subject, not its author, and honestly, it's just sort of dull.
The original idea was that I would go there to discuss news about the book itself rather than bore everyone here, but I always ended up either talking about it here or directing you to go read it over there anyway. Perhaps I'll simply try not to be so boring about book stuff when I write about it instead.
Anyway, the only reason I'm even mentioning it here is that I may try to import a few of those posts over here, and if I do, you might get some weird, out-of-chronological-order things show up in your RSS feed or whatever you use to read this. (RSS feeds are a mystery to me. They are like 90% of my household appliances: I use them but have no clue how they work. For all I know, they could be... magic...)
If you're reading this and wondering "Wow, are things in Rob's life really so fascinating that this is all he has to post about?", well, you might just be a very wise person. A smartass, but wise.
The original idea was that I would go there to discuss news about the book itself rather than bore everyone here, but I always ended up either talking about it here or directing you to go read it over there anyway. Perhaps I'll simply try not to be so boring about book stuff when I write about it instead.
Anyway, the only reason I'm even mentioning it here is that I may try to import a few of those posts over here, and if I do, you might get some weird, out-of-chronological-order things show up in your RSS feed or whatever you use to read this. (RSS feeds are a mystery to me. They are like 90% of my household appliances: I use them but have no clue how they work. For all I know, they could be... magic...)
If you're reading this and wondering "Wow, are things in Rob's life really so fascinating that this is all he has to post about?", well, you might just be a very wise person. A smartass, but wise.
July 6, 2007
It's good to be the king.
When I posted excerpts from the Declaration of Independence the other day, I left out the middle part, the whole "here's what the king did to piss us off" section. In doing so, I left out the two best lines:
He has dissolved Representative Houses repeatedly, for opposing with manly firmness of his invasions on the rights of the people.
and...
He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.
I know. I really need to grow up. Don't think I'm not aware of that.
--
"Okay guys, one more thing, this summer when you're being inundated with all this American bicentennial Fourth Of July brouhaha, don't forget what you're celebrating, and that's the fact that a bunch of slave-owning, aristocratic, white males didn't want to pay their taxes."
-- Dazed & Confused (1993)
He has dissolved Representative Houses repeatedly, for opposing with manly firmness of his invasions on the rights of the people.
and...
He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.
I know. I really need to grow up. Don't think I'm not aware of that.
--
"Okay guys, one more thing, this summer when you're being inundated with all this American bicentennial Fourth Of July brouhaha, don't forget what you're celebrating, and that's the fact that a bunch of slave-owning, aristocratic, white males didn't want to pay their taxes."
-- Dazed & Confused (1993)
July 4, 2007
The Fourth
In CONGRESS, July 4, 1776.
The unanimous Declaration of the thirteen united States of America,
When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.
The Fourth of July can inspire mixed feelings with some, particularly for people like myself who have lost faith in our government and who don't hold up much hope of regaining that faith, even if the White House changes parties in the next election. If anything, a Democratic administration might very well damage our faith even more; I may be appalled at the immorality and shamelessness of the Bush Administration, but I'm never surprised, and I don't reel particularly betrayed. Some people are fond of saying that Bush is not their president, completely missing the point that he decided they weren't his constituents long ago.
And yet for me, Independence Day has a certain magic to it because I still have immense pride in being an American. Fourth century Romans could see the end coming, but that didn't stop them from recognizing what a remarkable achievement their very existence had been to the world. One can love with open eyes; what hope is there for any of us otherwise?
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.
Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.
The main reason I love this day so much is simple. Independence Day isn't about the bravery of Minutemen, George Washington on a horse, or the rockets' red glare. It doesn't celebrate the beginning of the Revolutionary War, but rather the signing of the Declaration of Independence. The Fourth of July celebrates nothing less than the power of words to change the world.
The words to the declaration have become so familiar, celebrated in marble and in textbooks, that it's easy to forget just how dangerous and seditious they really were at the time. The men who wrote them and signed their names were outlaws, and the cost to them could have been their very lives. They were writers and thinkers, and the power contained in their words, as well as the clever spin that gave their fellow colonists a deranged king as a villain rather than a faceless parliament, convinced a bunch of farmers and tradesmen to take up arms against the most powerful nation on earth. Those words changed the course of world history.
Guns and bombs and blood and bravery and sacrifice, all set in motion by pen to paper, and by minds at work. At the beginning of almost every world changing event, you'll find someone scribbling furiously, typing without pause, or speaking passionately to a gathering crowd.
Those of us who consider ourselves writers need to remember how our words can move the hearts of our fellow citizens of the world.
We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these united Colonies are, and of Right ought to be Free and Independent States; that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. And for the support of this Declaration, with a firm reliance on the protection of divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.
June 28, 2007
After the monster, 2003
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
Before the monster, 2002
I used to have a bunch of these available online, but I totally forgot this was out there.
Has it really been five years?
June 25, 2007
Creative play is not for the weak
If you ever wondered what would happen if ballerinas and Tyrannosaurus met in combat, Schuyler has done a little independent research and has an answer.
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.
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
How do you like me now? Yeah, that's what I thought.
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 2007
I began the actual writing of my next book a few days ago. I'd like to say that it was only a coincidence that I began a book on fatherhood (tentatively titled Father Land; that may change, but for some reason, I sort of need a title before I start something, nut that I am) the week before Father's Day. I'd be willing to concede, however, that the numerous advertisements for Father's Day sales and products might have provided a mental kick in the ass. "Say there, smart guy. Aren't you supposed to be writing a book on this stuff?"
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.
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
Future Girl
For the past few days, I've been listening to the audiobook of Anne Lamott's Plan B: Further Thoughts on Faith. (I have a 45 minute commute to work three days a week, and my apartment complex's housepainters broke off my car's antenna while removing a cover a few weeks ago, so I've been listening to audiobooks lately. Judge me if you must, book snobs.) I'm a big fan of Anne Lamott, even if we've arrived at different places spiritually, and I was even before we had Schuyler or met the monster.
A passage from the chapter called "Diamondheart" jumped out at me, in which Lamott writes about her son, Sam:
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.
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
A Good Day
Late last night, we emailed two of Schuyler's teachers, the one who teaches her Box Class and the one who is the Assistive Technology Team Leader in Plano. We told them what happened.
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.
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
Nostalgia, and not the good kind
I'm going to post this, and then I'm going to probably clam up about the situation until it resolves itself.
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.
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
Rough transition
I wish I could report that Schuyler's making an awesome transition to her new summer program, but the truth is, she had a bad day.
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.
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
RTFM
Well, as I write this, Schuyler has been at school and her after school program for most of the day, and so far, no panicky calls. I've been staring at my phone all day, daring it to ring, but so far, nothing. Which is good.
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.
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
Thunderpug
We had a big storm move through early this morning, one that was all red and yellow blobs on the weather radar. It was loud enough to awaken Schuyler and me but not Julie, who will sleep through the Apocalypse, should all that Bible hooey turn out to be true. (Won't my face be red if it does.)
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.
Baaaaad dog.
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.
Baaaaad dog.
Newer, fancier, done-er
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.
When the path of least resistance isn't
(Before I tell this story, I feel like I need to make something very clear, because it's sort of confusing. The program that I am discussing in this delightful rant is affiliated with Schuyler's school system, but they are not actually a part of the school itself. They operate on school grounds and work closely with the teachers, but their rules and administration are all their own. Schuyler's school district rocks the house and we are entirely pleased with the job they are doing. Scared yet?)
-----
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.
-----
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.
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