Rubber swords

This post is specifically intended for the people whom I have in the past referred to as "shepherds of the broken", the parents of special needs children, most of whom are quiet heroes.

Sometimes, when you are the parent of a child with a disability, there are times that you have to stand up and fight a system that shamelessly puts its own self-interests ahead of the very real interests of your kid.

It probably doesn't hurt if you and your spouse are lawyers.

Judges: School Held Autistic Student 'Hostage'

(Naperville Sun) NAPERVILLE Two judges have said Naperville School District 203 held an autistic student "hostage" to "blackmail" his parents into agreeing to its plans for his education.

Killian Hynes, a nonverbal, autistic 6-year-old Naperville boy, communicates using a device known as a Tango. It's as important to Killian as a wheelchair to a child with a physical disability, said his father, Kevin Hynes, 43.

That's why the Hyneses took legal action when Naperville School District 203 withheld Killian's communication device.

"I know my rights, and I know my son's rights," said Kevin, a lawyer, as is his wife, Beth, 44.

(Read more...)

(Thanks, Dorothy, for bringing this story to my attention, and Erin for the link.)

Schuyler's current situation is so good that it's easy to forget how bad it was before we moved to Plano, or how firmly a school system can dig in its heels when it is convinced that it has an interest that it needs to protect from another resource-gobbling special needs family.

If you are the parent of a broken child, you may have had your doubts as to how seriously your kid's school district takes you. There's no telling how seriously they take you as a parent or as a knowledgeable advocate for your kid, but don't ever forget that as a threat to their autonomy and their allocation of their precious resources, they take you very seriously indeed.

I googled the lawyer for the school district in the Naperville case and found her listing with a law firm which appears to specialize in representing educational institutions and local governments. (Her name isn't exactly a secret, and I'm hardly saying anything here that would get me in trouble, but I think I'll give her a fake name just the same. She's no different from countless others doing the same kind of work.) Her listing makes it pretty clear what she does for a living, and what her work might mean for a great many special needs parents.

Gretchen McLawyerson focuses on special education and students' rights law. She counsels and represents public school districts at IEP meetings, due process hearings, mediation, and student expulsion and residency hearings. Gretchen has defended district decisions regarding evaluations, services and placement of special education students in due process hearings. She has successfully removed dangerous students from the regular education environment and also prevailed in hearings to defend against a parent's unilateral private placement of a student. She has assisted clients in building residency and discipline cases involving students and has successfully defended districts' decisions in state and federal courts. Gretchen's litigation experience also includes proceedings before federal and state agencies including the Department of Education, the State Board of Education, and the Office for Civil Rights.

To be fair, a list of her recent presentations suggests that a great deal of her work involves teaching schools how to provide adequate resources for its students (while avoiding liability issues, of course). I'm sure Gretchen McLawyerson sleeps pretty well at night and believes that the work she does is in the best interests of her clients and their ability to provide services to as many students as possible, and she's probably right about that at least some of the time.

But when she gave a presentation titled "Taking Charge of the IEP Process", it doesn't take much imagination to form an opinion about who it is that she is empowering, or who it is that she believes the IEP needs to be taken charge from. Gretchen McLawyerson focuses on students' rights law, but given her clients and their interests, do you think her expertise in this area primarily rests in knowing exactly where those students' rights begin or end?

And she's just one lawyer, just one random example taken from one news story about one case that happened to catch the eye of one reader of my one little blog about one broken child amongst millions.

When I write in my book about "fighting monsters with rubber swords", it's not always Schuyler's polymicrogyria that is the monster. Shepherds of the broken protect our flocks from a variety of wolves.

Book Jabber

(This is a LOOOONG post specifically about book stuff, I'll warn you in advance.)

I got featured on Metafilter yesterday, which was both cool and a bit startling when I checked my stats. I panicked a little since I was right in the middle of updating the book site with some significant changes. God knows what people were seeing when they went there, but a LOT of them went there.

Two interesting points were made in the comments. One of them came from a long-time reader, or perhaps I should say a long-AGO reader, who enjoyed my writing before Schuyler was born but found me to have since become a one-trick pony, albeit one who is good at my one trick.

The thing is, he's right, and not just in the sense of my writing. When I think back to the life I had before Schuyler and the one I've had since she was born, and particularly since she was diagnosed, I can see how she has come to dominate my world. I'm not sure that's such a bad thing; I think I'd be kind of a crap father if it hadn't, especially given her condition. But more than that, taking care of Schuyler and fighting the good fight with her has given me a purpose, a mission even. Choosing to write a book about it made that even more true.

I know I've become less amusing and less "controversial" (which is a silly word to use since I was never really controversial so much as just sort of an ass) since those early days, but I think I found my stride as a writer, and my Muse. (Hint: she's four feet tall and speaks Martian.) So it's a valid criticism, but I'm not sure how many people really miss the guy that I was before all that much. Looking back now, I really believe that I was just waiting for Schuyler.

The other point that came up in the Mefi thread was one about which I suspect many people are curious, particularly writers who are interested in moving from online writing to the kind that kills trees. (Stupid trees. That's what they get for growing roots instead of legs.) It involves my removal of my old journal archives, and whether or not I was somehow bullied into doing so by my big mean publisher.

(One note of clarification: I removed the archives covering the same period of time as the book specifically for book-related reason. The materials from before that, in a stroke of poor timing coincidence, disappeared when the server where they had been stored all these years finally shuffled off this mortal coil. One of these days, perhaps I'll put them back up somewhere else, but I'm not actually in a big hurry to do so any time soon. Honestly, I was sort of a dick back then.)

One person remarked that the book deal came about as a direct result of my blog. (I'm not actually sure if that's 100% true, although it certainly became an important part of the marketing plan for the book soon after I signed with St. Martin's.) "That publishers decide to use their economic leverage to force authors to remove their stuff from circulation so the publisher can monetize it upsets me," they said.

So here's my perspective on that. From what I have learned this year, my contract with St. Martin's Press is actually neither unusual nor particularly draconian. If anything, it gives me more involvement in the process than I expected. I've had a crazy cool amount of input in the design, and so far the editorial process has consisted of fixing and tightening up my writing, not so much cutting. The book that will be published is probably going to look very much like the one I envisioned, except with much better grammar and fewer F-bombs. (I'm down to three, believe it or not, although one of them is a "motherfucker", which I think should make for bonus points both in Scrabble and in street cred, yo.) I didn't get a huge advance, but as a first time author I didn't expect one, and all that really means is that the book will have less to earn out before I begin to see royalties down the road. (WAY down the road, if what I've heard about publishing in general is true. Well, what are ya gonna do?)

In other words, my experience with St. Martin's Press has been almost entirely positive. I've heard horror stories about how authors are treated by the Giant New York Fancy Pants Publishing Houses, but so far, those stories haven't been my own. They've said yes to just about everything I've asked for, and my editor still treats me like I'm doing them a favor by letting them publish my book.

The part of the contract that applies to my blog ("Competing Works") is actually pretty generous, now that I go back and read it again. The contract actually gives me a good amount of wiggle room in regards to retaining material on the blog that was online previous to its incorporation into the book, only disallowing direct duplication of text beyond a contractually specified number of words. Even my archives would seem to be mostly safe, since a very small amount of the book's text is drawn directly from the blog.

With a memoir that covers the same material that a blog has covered for seven years, however, "new" is obviously not 100% clear. Anyone who has read my blog is going to be familiar with a lot of this material even though it's being freshly told.

The point becomes murky, especialy since every so often as I reviewed the blog and journal to refresh my memory, I'd come across a turn of phrase that I liked and decided to use again. How much would I be required to change a similar passage in order for it not to be considered the same material? It would have to be determined on a case by case basis, surgically removing the bits and pieces that felt too close to call.

I should mention that aside from the competing works clause contained in my contract, at no time has anyone at St. Martin's even mentioned removing my archives. (I guess they assumed that I was capable of reading my own contract, which was mostly true.) Technically speaking, I suppose I don't actually have to pull anything at all down until the book comes out in seven months. St. Martin's has been very cool about the blog and the book site; I'm sure they understand the importance of an online component in building interest in a book.

In the end, I decided to remove the archives in their entirety. For one thing, if I only used materials that I thought were especially worthwhile, then removing them would mean cutting out the best of my writing and leaving the rest. I didn't much care for what I was likely to have remaining. ("I took the best cuts of beef off this cow, but you can have the rest if you want.")

I also felt that I had entered into a business agreement with St. Martin's Press, with the common goal of bringing Schuyler's story to the printed page. Their part of that agreement involves a huge financial investment that they have no guarantee of getting back. What should my part be, beyond the writing itself? What's my commitment to this project and its worth?

I guess the main reason for taking down my archives, however, has more to do with writing itself. Telling the story of those years was important to me, both at the time and now. I just spent the past year or so telling that story with greater clarity and with the measure of understanding that has come from looking back on it. I was lucky that I was writing about it online all that time; I was taking detailed notes for a book that I didn't even realize I was going to write. Now that the book is done, I'd like for it to stand on its own.

As for the future, I'm not going anywhere. I can't imagine that Schuyler's story is going to become boring any time soon. If it does, I'll just make some stuff up.

(Joking. As far as you know.)

The dry cleaner called, my fancy pants are ready.

Bio 8
Originally uploaded by Citizen Rob.

So I get this email just now, from the ever-cool Rachel Kramer Bussel, letting me know that she just added my book to her Amazon wish list.

Huh?

I go to Amazon and look.

And there it is.

Well, there you go.

Schuyler's reality, written in pencil

Animal variations
Originally uploaded by Citizen Rob.

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.

Schuyler speaks

Snowball
Originally uploaded by Citizen Rob.

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)

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.

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)

The Fourth

When in the Course of human events...
Originally uploaded by Citizen Rob.

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.

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.

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?

Creative play is not for the weak

Inevitable
Originally uploaded by Citizen Rob.

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.

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.

Father's Day 2007

Us
Originally uploaded by Citizen Rob.

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.

How to be Schuyler's hero for a few days

I rented this for her on Netflix.

Future Girl

Originally uploaded by Citizen Rob.

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:

"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.

A Good Day

Schuyler
Originally uploaded by Citizen Rob.

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.

Nostalgia, and not the good kind

Serious girl
Originally uploaded by Citizen Rob.

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.

Rough transition

Even monster slayers get the blues.
Originally uploaded by Citizen Rob.

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.

Mythic Creatures

Am I going to try to take Schuyler to New York City to see this?

Well, what do YOU think?

RTFM

From Schuyler to Schuyler
Originally uploaded by Citizen Rob.

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.