December 20, 2010

Eleven

Schuyler wasn't due until January of 2000. When she was born two weeks early, we tossed out the middle name we had chosen (Helena, in honor of the grandmother I never met; we decided to save that name for a future daughter, but Fate and its monster had different plans) and instead chose Noelle, the feminine form of a French word meaning simply "Christmas".

For the past eleven years, Christmas and Schuyler have always been inextricably connected to me. We're not Christians, but we have our own miracle baby to celebrate this time of the year. (Let the indignant emails begin.) To me, Schuyler is Christmas.

Tomorrow is Schuyler's eleventh birthday, and while it's true that every year brings a level of surprise at how much she has grown, this year feels even more change-filled than usual. She seems more complex, more understanding of the world around her, particularly the rough and ugly parts of it. And yet, when I watch Schuyler move through that world, I can see a young lady who possesses a quiet sort of confidence, and a strength that surprises me sometimes.



Two days ago, Schuyler returned to the dentist to finish the root canal from a month ago. Once he got into the tooth, however, he realized that he couldn't finish it. Schuyler apparently has a weird tooth, and will require the services of an endodontist to finish the job. Ultimately, she had endured another morning in the dentist's chair and another root canal session for nothing. It was frustrating.

But here's the thing. She didn't care. She didn't cry at all, didn't fuss or resist, and she kept a cheerful disposition the whole time. (The gas might have helped in that regard; it turns out that nitrous oxide makes her extremely chatty, the irony of which does not escape me.) The next day, for her birthday, she got the thing she's been requesting for about two years now: pierced ears. When they punched through her earlobes, a dark expression crossed her face for a few moments, but when she looked in the mirror, she smiled broadly and that was that.

This is the person Schuyler is becoming. She's more aware than ever of the pain and the clouds in her life, but she's also acutely in touch with the moments of joy, the pieces of beauty that are lying around waiting to be picked up.

In watching Schuyler grow into this extraordinary person, I myself am changed. It's ridiculous to say that I 'm a better person because of her. I don't even know the person I would be without her. I would be less, much much less. I would be a smaller, more shallow human being, and I would walk through the world largely unaware of those beautiful pieces waiting to be discovered. I have Schuyler to thank for that.

Happy birthday, little girl.

December 13, 2010

A conversation I'm not sure I know how to have


R & S
Originally uploaded by Citizen Rob
Conversation in the car, earlier tonight.

Me: Are you okay?

Schuyler: Yeah.

Me: You seem like you're sad.

Schuyler, shrugging: A little.

Me: Why are you a little sad?

Schuyler: Two mean girls at school.

Me: What did they do?

Schuyler: They made fun of me. "You're stupid. We're not friends at all!"

Me: Oh no! Why did they say that?

Schuyler: They don't like me because I can't talk. I'm different.

Me: You are different, but that's not a bad thing, you know.

Schuyler: I don't want to be different anymore.

And there's a whole conversation to be had after that, the one about how being different is hard, but it's also the thing that makes you special, etc., the whole "purple snowflake" thing.

But Schuyler doesn't always buy it, not entirely, and while she was able to put it behind her by the time she went to bed, I know that it sticks with her now, in ways it didn't before. And all the pep talks and all the Sesame Street sentiments in the world don't change the fact that for a little girl like Schuyler, self-aware and a week away from her eleventh birthday, being different just sucks.

I can (and did) tell her that everyone is different in their own way and that's okay, but she knows that she is very different indeed. And sometimes it is very much not okay.

December 6, 2010

Letting Go


Schuyler on my birthday
Originally uploaded by Citizen Rob
Schuyler is growing up so quickly, and while I know that's something that every parent feels, I'm not sure they all feel it with quite the fear that I do. Well, perhaps they do at that. In just a few weeks, Schuyler will turn eleven, although just typing that word feels wrong under my fingers. Eleven? That's impossible. Babies aren't eleven. Don't be stupid.

Becoming the young woman that she is to be one day means letting go of the little girl she has been, and that's difficult, for Schuyler and, I suppose, for me as well. Lately it seems like there's been too much change, too many pieces of a childhood to put away at one time, too many grownup truths to face at once. Some of those truths are especially hard for me, the ones about myself and my own shortcomings in particular. It hasn't been an easy time lately.

The day after Thanksgiving, and on my birthday even, Schuyler received a rude awakening into a part of adulthood that has been particularly troubling during my own life. Out of nowhere, she suddenly began to cry, and hard. She indicated that a tooth was bothering her, and pointed to a part of her mouth where one of her baby teeth had been signaling its intent to jump ship for some time. But when I looked in her mouth, I instantly identified the problem, not with the baby tooth but rather with the permanent molar behind it. My stomach tightened when I saw it.

About half the tooth was missing. I was looking at the tissue inside the tooth.

So it was that after a night of Tylenol and lots of tears and Orajel, Schuyler experienced her very first root canal. I have to say, she was a total champ about it. There were some tears, but nothing hysterical. I sat next to her while she had it done, holding her hand the whole time, and while I don't think she had a great time, she was surprisingly resilient about the whole thing. We even had some fun laughing and taking pictures as one side of her face stopped working. But yeah, a ten year-old getting an emergency root canal. There have been a lot of little-girl-growing-up experiences we've been bracing ourselves for. This one caught us completely by surprise.

That surprise has been reverberating, too. Even with dental insurance, the crown is going to cost us a lot, and we were still trying to figure out how to get caught up as it was. That tooth is going to make for some changes around here, that much is clear. In the short term, we're going to become a one car family for a while. I simply can't make payments on my stupidly excessive car and still purchase The World's Fanciest Tooth. So we face some new realities, ones that plenty of families face, and I'm sure we'll get through it okay.

There's a hard truth to face. I'm not providing for my daughter the way I should. I have a good job, one that I'm frankly lucky to have, but I don't make enough money and I don't see any prospects for making more any time soon. We've been living an existence where one bad medical emergency (like, say, an emergency root canal) could torpedo us. It was only a matter of time, I guess.

Anyway, we'll make it, because that's what people do when things get tough. But the whole thing has amplified that nagging feeling I have. No, I'm going to just say it. It's not a feeling, it's a fact, one that I've stated on a number of occasions.

I'm failing Schuyler. I don't fail her for lack of trying; I like to imagine that there aren't many fathers who try harder than I do. But trying isn't succeeding, and the sinking feeling that I'm just not doing well enough for her has been threatening to overwhelm me. I don't see it as a result of depression. I see it as my ability to recognize an ugly fact. I don't feel like a very good father these days. I don't even feel like an adequate one.

Schuyler's been having issues at school, and I just don't know how to help her. She continues to fall behind her classmates, and it breaks my heart. Tomorrow she has a test in her mainstream class, a science test on matter, and we've been trying to study for it with her. But it is just so far beyond her. Last night, I sat down with her and went over the material, and while she understood solids and liquids and gases, the movement of particles and the basics of mass and volume, all of the rest of it, she just couldn't get a handle on it.

It was frustrating, for us both. As I keenly felt my own inability to teach her, at the same time I could see the look in her eyes. It was that sad, frustrated expression that she gets when she becomes aware, all over again, that she has troubles that her classmates do not, that she is broken in ways that sometimes manifest themselves at unexpected times.

I asked her if she understood any of it. She hesitated before admitting that no, she really didn't. And then I did something that I am deeply ashamed of, and yet given the same moment in time to do over again, I would probably do again. I gave up. I told her to do her best, and I put the materials away. I know it was exactly the wrong thing to do, but her frustration and my own failure were too much for either of us to process. It's not normally how I respond, but I don't know, it had just become too much. A day later, it still feels like too much. And while I know it was really hard for her, I think what I really mean is that it had become too much for ME. I'm deeply ashamed to admit that, but it's absolutely true.

Some of the most significant problems she's having are social, and they reflect on just how hard it has been and continues to be for her to let go of her childhood behaviors. Schuyler is a very loving little girl, and probably due to her nonverbal beginnings, she is very physically demonstrative as well. I always used to dread the day when her enthusiastic physicality would cease to be cute to the rest of the world, and I think that day is probably here. She is putting off her classmates, she touches them and hugs them and gets in their business until they feel smothered, and they push her away. Her teachers talk to her about it, probably daily, and we re-enforce the message as best as we can, but it's hard to convey that she can be that loving little girl at home, but not so much at school, where she will soon, very very soon, leave the protective shelter of elementary school for the Mad Max gladiator ring of middle school.

Schuyler is having to learn to leave a good, right part of herself behind, and it's hard for her. She needs to harden, she needs to put up some walls, and I am failing miserably at teaching her how. It's funny, too, because I certainly have no difficulty in putting up those walls for myself.

But I'm not her. I'm not good like her. I don't have the faith in a mean world that she has, a faith that she has somehow hung onto and nurtured her whole life, in spite of the many opportunities she's had to learn otherwise. She looks at the world and sees friends and sisters, and that doesn't change even as the people around her disappoint her time and time again. I don't know how to teach her to see people differently. I don't know how to take a thing about her that feels like an absolute good and squash it into a box.

I don't know how to teach her to let go of that.

November 28, 2010

A Beedies thing

I don't usually cross-post much, and I tend to keep the diabetes talk off this blog, for the simple reason that it tends to bring out the assmonkeys in battalion strength numbers.

But I wrote an article for dLife, called "Club Membership", that I think is worth sharing, precisely because of the previously mentioned assmonkeys.

Anyway, here you go.

-----

UPDATE, 12/3 - I guess I had a little more to say...

November 20, 2010

Magic trick


Sad day at Legacy Books
Originally uploaded by Citizen Rob
Earlier this evening, we visited a new independent bookstore in the area. Well, it's technically new, anyway; A Real Bookstore opened this week following the closing of my beloved Legacy Books a few months ago. Same people, slightly different concept, and I wish them well. The new store isn't quite as fancy or unique as the old, but I think it has at least a chance of surviving, so there's that.

Anyway, as Julie and Schuyler went to the (very nice) kids' department, I briefly stopped in the Biography section to see if they had my book. (Because I am a total narcissist, sure. I'd like to see YOU walk into a new bookstore and not check to see if they carried your book. Judgey.) I discovered that not only did they have it, but it was a copy left over from my store appearance back in 2009, complete with autographs from me (in boring black ink) and Schuyler (in pink, with little flowers). If that sounds like fun to you, well, now you know where you can find it.

I rejoined the fam and we explored the store for a while. As we moved back towards the front of the store, I turned to Schuyler and said, "Do you want to see if they've got your book?" She was all about the idea, budding little narcissist that she is. When we found the book, I pulled it out and held it over her head.

"Want to see a magic trick?" I asked. "I'm going to sign this book with my BRAIN!" I closed my eyes, put the book to my head and made a funny alien sound for a few seconds.

"Do you want to try it?" I asked. She nodded excitedly, and I put the book to her forehead. She closed her eyes and made some appropriately weird sounds. "Sign it in pink," I said "And draw some flowers!"

When I opened the book and turned to the title page, I have to say, she was muchly impressed. I suspect she might have seen through my shenanigans, but if so, she kept it to herself. Sometimes Schuyler plays along when she knows better. She understands that there are different kinds of magic in the world, I guess.

November 15, 2010

Wrong


Feeding giraffes
Originally uploaded by Citizen Rob
"What's wrong with HER?"

I wasn't sure how to answer that question when it burst forth from a grouchy old woman at the grocery store (why is it always grouchy old women at the grocery store?), in response to Schuyler's energetic babbling. (Well, okay, I lie. I knew exactly how to answer her. Let's just say that I neglected to take advantage of the teachable moment and leave it at that.) And honestly, having a good answer isn't a high priority. Schuyler's behavior doesn't typically inspire remarks like that, and there are just some people who enjoy hating at the world around them all the time.

Honestly, I don't imagine it was an actual question so much as a statement. "There's something wrong with your kid." But I wonder how often people ask themselves when they see her, particularly when she's in a talkative mood. I saw the question in the eyes of a Verizon guy who came to my door the other day and found himself face to face with an odd little girl with some incomprehensible questions, presumedly not about the tv/internet package he was peddling. He was polite to her, probably because he was trying to sell something to her father, but it was in his eyes. I think he was wondering what was wrong with her, too. It happens sometimes.

There are a lot of potential answers to that question, but I'm not sure how many of them actually tell Schuyler's story. Her monster makes for a long, unsatisfying answer."Well, you see, she's got a rare brain malformation that robs her of most of her speech, obstructs her fine motor skills, has resulted in developmental delays that inspire some well-meaning but lazy professionals to attempt to label her as 'retarded', causes her to drool sometimes, which of course kicks open the bully door for the shitty little kids at school, and oh yeah, might give her seizures one day. As a matter of fact, I think she may be having small ones now, but I can't prove it without allowing heartless pediatric neurologists to once again rudely glue electrodes to her head so they can again tell us that SOMETHING is happening but they don't know what."

That's a lot of information for the grocery store.

And it's not the whole answer, either. What's wrong with Schuyler? Does she go to school in an especially class-conscious community that places high value on one thing -- conformity -- that Schuyler will never be able to fully achieve? Why, yes. Yes she does. Is Schuyler's father underemployed and slowly going under financially? Is he rapidly losing his faith in his ability to take care of her? Yep. Is she about to leave the relative safety and nurturing environment of elementary school for the Lord of the Flies crucible of middle school? You'd better believe it.

None of those is probably the answer the old woman in the store was looking for, either.

The thing that is wrong with Schuyler most of all is that she lives in an unfair world, one that isn't ready for a kid like her, not completely. And it's not the wags at the grocery store who are the problem, either. It's those of us who love her and care about her the most that make the mistakes that bring her down.

I won't go into the details, but at her after-school program last week, Schuyler was accused of some things that she is actually physically incapable of doing. As we discussed the situation with the on-site director, it was revealed that despite the rather detailed information submitted by us and by the school, a lot of the basics of Schuyler's condition have gone essentially unknown and unobserved by the staff. This isn't just unfair to Schuyler (yes, she needs a speech device to respond to questions when she has been accused of something); it can actually be dangerous to her. (No, she can't eat chips. Yes, they could kill her. Trust me; I've watched it happen.)

I met with the director the next day. Now, I know it sounds like I go into these situations guns blazing, but in fact I almost never do. With a very few exceptions, I have been polite and measured during even the most contentious encounters with any of Schuyler's teachers and staff. This time wasn't any different, but I did make it clear that we were disappointed, and that our faith in the program as a safe place for Schuyler was badly shaken. The program director's reaction, however, was one of genuine remorse, especially when I related that Schuyler was sad and apologetic now without even understanding what she had supposedly done. I thought the director might actually cry. And even though I had done what I needed to do and had expressed exactly what had to be said, I still felt (and feel) badly about the encounter. I wouldn't do it any differently, but I don't actually enjoy being That Guy.

What's wrong with Schuyler? She is surrounded by and in the care of people who love her hugely but imperfectly. Everyone who knows her wants to give her the whole world, but none of us understand the world she's already in. What's wrong with her is us. What's wrong with her is the world.

Schuyler is the best friend anyone could ever want. She's loyal and she loves with her whole heart. She recently made friends with an entire squad of color guard girls at the high school where one of my best friends teaches. She actually became cross at me for referring to them as her friends. "They're my SISTERS," she corrected. She also lists as her friends a quartet of giraffes she fed at the zoo recently. Of course, giraffes are cool, but what she wants most of all is to have friends at school. She's learning, the hard way, that they can be elusive.

Schuyler tries, though. She tries to make peace with a world around her that doesn't quite know what to do with her. She works so hard at presenting herself to the world, almost as if she believes (as I do) that if they could just look at her with fresh eyes, if they could approach her on her own terms without trying to cram her through those horrible bullshit societal filters, then they would see how perfect of a friend she can be. Broken and weird, wholly unique, but a perfect friend.

Unlike me, she believes in the world's capacity to return her love. THAT is what's wrong with Schuyler.

October 12, 2010

Alabama Song


Ta-daaaah!
Originally uploaded by Citizen Rob
I am happy to report that Schuyler and I survived our almost 1,500-mile round-trip drive to Auburn University for the Alabama Assistive Technology Expo and Conference, where I delivered the opening keynote address and also presented a breakout session on AAC implementation from a parent's perspective. Not only did we make it through the drive without any lasting damage, but we actually had a pretty good time.

As far as the drive itself was concerned, there were highs (the Mississippi River, with which Schuyler was suitably impressed), some lows (the actual state of Mississippi itself; the parts we visited reminded me a little of an episode of "Hoarders", except, you know, everywhere) and some in between (getting lost in Alabama, which resulted in a charming and pretty drive but also added a lot of time to an already daunting journey). I've made long, 12+ hour drives in the past, but I never did it sitting on a 42-year old ass before.

The conference itself was outstanding. I'm always impressed by the participants I meet at these things, people who have dedicated their professional lives to helping folks like Schuyler and a lot of others whose monsters are pretty frightening. They've decided that this is what they want to do with their lives, and they invite an everyday schlub like me to come stammer my way through a speech because they want to hear what a parent has to say. They want to know how they can do what they do even better, even though from where I'm standing, they appear to be doing extraordinary work as it is.

Schuyler was her usual social butterfly self. She was a good kid for the duration of my presentations, which is pretty amazing when you consider that I spoke for about two hours, and yes, she's a ten-year old kid with a self-charging battery and a brain that feeds off of new experiences. A lot of kids, particularly those with special needs, require lots of order and routine and even ritual. They don't like change and they can only handle so many new experiences and people at one time. Schuyler is the exact opposite. She craves new worlds and new friends, and when she falls into a routine, that's when she's in danger of losing her way. Schuyler exists in a world with very few grooves and a few too many ruts. Conferences like ALATEC are like a drug to her.

It would be hard to say what the high point of her trip might have been. It could have been her fascination with the exhibitors, including a maker of prosthetic limbs that fascinated her. ("Daddy, I want one." No, Veruca, you cannot have a prosthetic leg, even if it does have flames painted on it.) It may very well have been her conversation with a deaf woman using her device and an interpreter but also by way of sign language that I had no idea she still remembered; she wants to learn more now, and she wants me to learn with her. Or Schuyler's high point may very well have also been the most memorable, when she lost a loose tooth right in the middle of a reception and proudly showed way too many people how much cool blood she had in her mouth. ("Look, I'm a vampire! Look at all the BLOOOOOD!")

I'm never sure if people are charmed or put off by Schuyler, but I also have come to believe that it doesn't really matter. She can be a wild kid and a clinger and a tornado, she can love you with all her heart and she can crawl up onto your last nerve, but the thing about Schuyler that I still value more than much else is her complete lack of guile. She is easily the most genuine person I have ever known in my life, and the older she gets, the more I hold onto the possibility that she might not entirely outgrow that. The thought scares me, but it also makes me inexplicably happy.

Anyway, I'd like to thank everyone associated with ALATEC, particularly Lydia Walls at Auburn and Joe Helm, Assistant Commissioner of the Alabama Department of Rehabilitation Services; Auburn's Kate Musgrove, who was the primary recipient of Schuyler's inevitable girl crush and who was nice enough not to get a restraining order; Sarah and Laramie, two students who were also on the receiving end of Schuyler's stalkerhood ("They are my sisters!"); and PRC's Sandy Baldwin, who not only took care of Schuyler during my presentation and actually helped her clean up after the bloody tooth drama, but who also cheerfully and patiently endured my troublemaking, both during my session and afterwards.

The troublemaking, incidentally, involved the identical responses that I got from many of you as a result of my question before the conference, about what you'd say to the assistive technology industry if you could. I hear it time and time again, and I see it referenced all over the AAC world. "When will AAC producers, particularly the Prentke Romich Company, produce an app that will take advantage of the iPad as a platform for its language system?" In my own defense, I think to NOT bring it up would have been timid and even wrong of me. To be blunt, I don't know that anyone is dying to have a DynaVox app for their iPad, but PRC's version of Minspeak is widely regarded as the most robust and ultimately successful language system for AAC devices. It's not for everyone, but for users like Schuyler, it has made the difference.

After quoting two of you in my presentation ("My heartfelt desire would be that PRC would develop an iPad-compatible interface.", and more pointedly, "The cost comparison outweighed the years of experience of language forming that the Vantage provided."), I gave my opinion. And at the risk of further troublemaking in the service of both a good company full of good people, and the very best of causes, I think that's how I'll end here as well.

Now, I’m sure you’ll talk a lot about this over the next two days, but let me just say that I believe that one of the most promising developments in AAC right now is the emergence of Apple's iPad on the market, as well as whatever competing products inevitably appear. For parents of AAC users who are largely ambulatory, including that huge population of kids with autism, most of the issues surrounding funding and decision-making and parental autonomy may change dramatically with the possibility of purchasing a $500 device at the mall.

And it’s not just about funding, either. It also addresses the resistance of our kids to use a speech device even under the most ideal circumstances. And it provides a rather elegant solution to the social integration problem. Kids with even the most advanced dedicated speech device are still carrying around something that tells the world “I have a disability.” Kids using an iPad have a device that says, “I’m cool.” And trust me, being cool, being like anyone else, that means more to them than it does to any of us.

The piece that is currently missing, however, is development for the iPad by companies like PRC and DynaVox. I could be wrong; there could be plans in the works to bring their language systems to the iPad that I’m unaware of. But until then, the gap will continue to be filled by smart, independent developers like Proloquo2Go’s Sam Sennott. Right now, it’s the Wild West in AAC development for the iPad.

Make no mistake. The iPad will bring a level of democratization to the AAC implementation process that parents and educators will take advantage of. And families using systems like PRC’s Minspeak-based Unity language may very well find themselves in the unenviable position of having to choose between the system they know works best for their kids and the system that they can afford. As a true believe in PRC’s language system, I have to say, that possibility breaks my heart. I don’t think I’d be exaggerating one bit to say that most of Schuyler’s success over the past few years has come about as a direct result of Unity. It has saved my daughter’s future, probably literally.

Now, I’m not sure what that business model would look like, the one where companies like DynaVox and PRC are developing for both their own devices and those available to the average consumer. But look at the trends in both educational funding and technological advances in the consumer electronic market, and I think you’ll see that someone needs to figure out that business model, and they need to do it soon.

So there you go. Please give us an app.

September 29, 2010

A quick note for parents of AAC users

So an I've mentioned before, I'm giving a presentation next week at ALATEC on AAC implementation, from a parent's perspective. (More about that trip soon.) The truth, however, is that my own experiences aren't terribly representative.

I'd love to get input from other parents who have experience implementing AAC into their child's life and curriculum. If you have any particular points that you think I should consider, please drop me a note, either here or by email.

Thanks for your input.

September 23, 2010

Charmed Life


Space Boy, Fly Girl
Originally uploaded by Citizen Rob
I was having a discussion with a good friend of mine last night, and the topic had turned to health, specifically her own, which had hit a few bumps recently. She wasn't complaining, but nevertheless she interrupted herself to say, "But I know you've got a lot more on your plate to worry about."

This might sound strange, considering the sort of downer tone my writing has taken over the past few months, but I was a little surprised to hear her say that. I guess I've had a lot of issues concerning finances and my own health that have piled up on top of everything else, but as I said in a recent post, none of those other concerns are ever going to eclipse my worries over Schuyler. Like that anecdotal unconcerned frog in the slowly heating water, however, I think I've become accustomed to my fears.

I write about them here, because I'm a writer and this is where I go to sort these things out. But in my day to day life, I don't think I walk around wringing my hands and muttering to myself, my brows constantly furrowed. That's not me at all. I might live in the shadow of my concerns, but I don't know, perhaps most of the time I just think of it as shade.

The fact is, yeah, I worry. Schuyler's future is daunting, and as more and more of that future turns into the present, the more oppressive that present becomes. Schuyler's own personal development issues are frankly terrifying; she remains an incredibly naive little girl, and middle school does not typically present a very nurturing environment for innocents. I feel like we might be serving her up like a buffet for bullies, and I'm not sure I still have confidence in the school to take care of her.

There are all the other possible future issues to give me fits, too. Bad boys, mean girls, apathetic teachers, poor fathering decisions, bad tween television, a $7000 speech device disappearing, evangelizing Christians, the Plano PTA, Amber Alerts, No Child Left Behind, Lady Gaga worship, pieced ears, boobs, and her first period. And I never allow myself to completely relax about seizures. Some of her monsters are Everygirl monsters, but the ones that are just hers make the rest of them bigger as well.

But here's the thing that's important for everyone to remember, myself most of all. Schuyler's future is murky and unseeable because she is, in a very real sense of the word, entirely unique. She really is that purple snowflake. And while that means that every step feel like it could be the wrong one, it also means that I get to live a life unlike anyone else's.

Schuyler is a little girl with a monster in her head, yes. She uses a computer to communicate, she's going to be in special education classes for the foreseeable future and her prospects for living a completely independent life are questionable at best. She's got some hard years ahead of her, and there's just no way to dodge that.

But Schuyler is also a vibrant, energetic little girl. She's curious and positive and genuinely funny. She's more beautiful than any girl who shares my DNA has any right to be, and she's got a sense of style all her own. She will draw a picture of you in an instant, and you'll always get a crown. Schuyler loves easily and hugely. She takes bites out of the world without hesitation or inhibition, and certainly without regard to how rough that world might be. She might live part of her time in an internal world that she cannot or will not describe in detail to the rest of us, but if you allow yourself to be open to her and the way she expresses herself, she might just let you see snippets of it for yourself.

And I am the guy who gets to be her father.

I am the one who gets to guide her, but I'm also the one who gets to grow with her, and in ways that the rest of you can only glimpse from afar. Schuyler makes neurotypical sound boring. She makes the idea of parenting a typical child with a typical narrative sound a little empty and a little grey. People meet Schuyler and see the astonishing human she's turning into, and they envy me for having her in my life and in my home every day. And they know that as sad as it might sound that Schuyler might spend the better part of her life living with her parents, that scenario might not be all that terrible for me.

And if the fear and the worry and the fight and the sacrifices are the fee I pay to secure the privilege of being Schuyler's father and walking down that path with her for as long as she'll have me and for as long as I'm able, then I would say that I have been blessed with a charmed life.

The anxiety and the fear and the sacrifice, those are the pieces I write about, and I'm sure she's aware of them already on some level. I'm not interested in pretending otherwise; it's the reason I wrote my book, for her to understand one day. But the rest of it, the stuff that makes me richer than anyone I know, the moments of my life that I don't share as often here because they're hard to describe but also because I kind of like keeping them to myself -- that's the stuff by which I believe Schuyler defines her life and her father. And I think that even when things are hard for her, she understands that she's living a bit of a charmed life herself.

September 18, 2010

Adventure Camp


Adventure Camp
Originally uploaded by Citizen Rob
Some of us have had a better week than others.

Mine was a little shaky. First of all, I've been tracking my blood glucose levels for the past week and a half or so on account of a somewhat disastrous doctor's visit, and it's been something of a struggle. I'm not going to go into it in detail because any time I mention my diabetes, I seem to hear from the kook fringe on a whole new level, about how I'm a fat piece of shit who deserves my diabetes, or how I'm a Type 2 and not a Type 1, so I don't even KNOW how bad I could have it. So no, not a topical door I'm kicking open, but the beedies have been something of a bummer.

On top of that, Schuyler went away for a three day camp. By herself. And I was a big ball of anxiety the whole time.

I've been calling it "Adventure Camp" for weeks, even though the school inexplicably (and boringly) refers to it as "Fifth Grade Outdoor School" for some reason, but I was pleased to note that the facility itself is actually called the Collin County Adventure Camp. Schuyler has been in a state of alternating excitement and fear about going to camp. She's indicated that she's having a tough time making new friends at school this year and that some of the kids have been mean to her. She told us that she didn't want to go to camp unless we were there (apparently there's no party like a Smelly Old Boring Parents Party), and at school, she told her classmates that she wasn't going (because we wouldn't let her). But in the days leading up to camp, her excitement level grew, and she was telling stories about how she was going to catch a bear at camp, and quite possibly eat him, too. By the time Monday rolled around, she hopped on the bus excitedly without so much as a glance behind her.

I wish I could say that my own anxiety level diminished, but I've been very keenly aware of how high the stakes are here. If she made friends and had a good time, it would very likely make the rest of her school year go much more smoothly, and help grow the community of classmates that will follow her into the horrific Lord of the Flies wasteland that promises to be middle school next year. And if camp went poorly, I feared that she would never get back on track.

Well, apparently Adventure Camp went very well for Schuyler. She missed out on that bear hunt, sadly (although really, I would prefer to be with her when she makes her first kill), but she engaged in archery, paddled a canoe, and even caught a fish. ("But just one," she's quick to emphasize; apparently she already has an intuitive feel for some of the wackadoo animal rights email I've gotten over the years.) She came home with a souvenir mug signed by her friends and teachers, a layer of kid filth that was impressive even for her, and a general air of contentment that we hadn't seen for a while. I think Adventure Camp was exactly what she needed. What we all needed, really.

Things aren't perfect; this didn't reset any of our concerns about the school year. The notebook that was supposed to be filled with scientific observations was mostly blank, for example. And in the few weeks she's been in school, Schuyler has yet to bring home a single piece of homework from her mainstream class. We won't be meeting with her mainstream teacher for a few weeks yet, but when we do, we'll still have the same questions and concerns that we've had for some time now. We're not interested in mainstreaming as an exercise in macaroni art; Schuyler will not be attending Potemkin Village Elementary School if we can help it. And I know that we're not the only parents who have had a rough year so far. There's still a lot of work to be done here.

But at the same time, Schuyler's experience at Adventure Camp appears to have been a step in the right direction. She survived, and she wasn't tormented or abandoned in the woods by the mean girls. For that, I am happier than I have the words to express.

Incidentally, we only heard about Schuyler's activities from her teacher. When asked how it went and what she did, Schuyler merely gave the same infuriating little smirk and said nothing much more than she had fun. Maddeningly, Schuyler still loves her secrets. I hope that the ones she chooses to keep over the next few months and years continue to be positive ones.

But I fear otherwise, and that breaks my heart.

September 4, 2010

Forever Monsters

Schuyler has been in fifth grade for two weeks now. It's hard to get a direct sense of how it's going for her. By the very nature of her condition, communication with Schuyler always takes place on her terms. More than typical kids, she expresses exactly what she wants and not one word more, and even her expression of what she's feeling and thinking is wildly imperfect. Sometimes she lacks the words for exactly what she's feeling, and other times she lacks the patience to put them together on her device. And often, she's lacks all of the above. I think she gets tired of her monster, more now than ever before.

Nevertheless, some details are coming out. She occasionally says she doesn't like going to school, which is certainly not unusual for most kids but is very much so for Schuyler. She has, until this year, shown an unfaltering nerd's love for school. Now she goes, but dutifully. When asked about new friends that she might be making, she dodges the question by saying she'd rather talk to her old friends. And when asked about the big 5th grade adventure camp getaway that's coming up, she either says she doesn't want to go, or that she only wants to go if we go with her.

Most of all, we've observed how her neurotypical classmates treat her in person, how they avoid her attention and are far too cool for her heartbreakingly naive affections. I find myself sort of hating them. It's wrong, I know, to hate little kids. But there you go. One more shameful confession for the therapy file.

Schuyler is very conscious of how the ease with which she once made friends doesn't always come for her. She's aware of how she really is very different from her NT classmates in ways that perhaps she looked past before. It's happening now, we're watching it happen, and it turns out that despite the fact that I've said it before about other things, THIS is now the hardest part for me about Schuyler's monster. The world is becoming hard for her, and she knows it.

I had an event at work the other day, a back-to-school cookout at the university. I sat and ate my low-bid, state university food service burger (who am I kidding, though; it was delicious), and I watched all these young students, so full of promise, and their faculty, confident and at the tops of their careers. I sat there amidst it all, watching these people as they took hold of their futures and of the discipline that they'd chosen into which to pour their passions, and I felt separate from them.

I know Julie feels this way at work sometimes, too. We listen to the petty complaints or the small victories of people whose lives are so simple, and we know that when they go home to their non-working lives, there aren't necessarily monsters waiting for them. And they don't know what waits for us when we go home, either, our world of uncertainty and of loving this little girl so hard that it hurts, because that's what it does. It hurts, this love, it hurts when you love someone but feel powerless to help them. And the rest of the world, the people we work with and the people we deal with every day, they can't see that.

Watching everyone at this cookout reminded me that this life, this thing that I do and that I think about every minute of every day, this is who I am now. I can try to identify myself as a writer, and I still like to pretend that I'm a halfway decent trombonist, but in reality, that's mostly beside the point. I am Schuyler's father, and her advocate, her overbeliever and her protector. I get it right, and I get it wrong, but it's what I do now. It's my life's work and I get how privileged I am to have it, but since last fall's meeting with the school, we are facing up to the probability that when she's an adult, Schuyler will likely live under our care. This is a rest-of-my-life gig, and that's just the way it is.

There have been people in my life who haven't understood that, people I've had to walk away from in the end. Some have seen this as a life I've somehow chosen to live, and maybe they think I'm not even living it all that well anyway. It's hard to explain to someone who has no frame of reference that I can never walk away, and that when I make mistakes and when I get it wrong, those failures cut deep because I'm afraid that I will never be able to make things right. I'll run out of time, and that will be that. Schuyler will miss her window of opportunity because I didn't get it right, or because I took my eye off the ball and the game just fell apart.

When I look back on what I've written of late, I can see how I've been repeating myself a lot, ever since last spring. I can see how sad and self-indulgent my writing has become, to the point that I actually find it a little challenging to even go back and proofread my work without becoming irritated at the big fucking baby I've become. But the truth is that I am a bit lost.

When something goes wrong at work, or when I get a phone call because I'm late making a car payment or paying a bill, or I disappoint someone in ways small and even not so small, I react in the same ways that everyone else does, because that's the world I live in. My car finance company doesn't care, and maybe they shouldn't.

But when someone is clamoring for my attention or waving a bill in my face or wanting a piece of me that I can't give them or expressing how very very much I've disappointed them, they need to understand something that I can't change, as much as I'd like to.

No matter how dire their need is, it's not ever going to be the thing I am the most worried about on any given day. It's simply not. And the things I do worry about the very most are the ones that I can change the very least.

These are the monsters that never go away, the tenacious, forever monsters.

Do you want to hear something really awful? And it is sort of horrible, made more so by the discovery in a recent conversation that Julie feels exactly the same way. One of my worst fears is that one day, hopefully far in the future, but on the day that I die, I'm afraid that my last whispered words, my last conscious thought, will be simply, "But who will take care of Schuyler now?"

September 3, 2010

Sacrifice

Sacrifice

I gave an eye to save from night
A babe born blind;
And now with eager semi-sight
Vast joy I find
To think a child can share with me
Earth ecstasy!

Delight of dawn with dewy gleam
On damask rose;
Crimson and gold as pennons stream
Where sunset flows;
And sight most nigh to paradise,
Star-studded skies.

Ah! How in old of age I feel,
E'er end my days,
Could I star-splendoured sky reveal
To childish gaze,
Not one eye would I give, but two,--
Well, wouldn't you?

-- Robert William Service

August 30, 2010

Three Things

I'm closing this particular post to comments. Sometimes I need to hear, but occasionally, I just sort of need to say.

A good and thoughtful friend asked me recently to name the three hardest things about my life. It was an interesting question. While answering it (and sharing my answer here) is extremely self-indulgent, and with an acute awareness that my life is a parade of royal indulgences compared to what most parents in my position deal with, here's what I said. I answered very quickly, with almost no thought, but days later, this still feels accurate.

  • I am tired of failing the people around me. Particularly Schuyler, I hope it goes without saying, but yeah.
  • I am tired of being poor.
  • I am tired -- I am exhausted and worn down to a grooveless record by it -- I am very very tired of being afraid of the future.

August 25, 2010

Mea culpa

Fighting the battles for a special needs child changes a person. I suspect every parent of a kid with a disability will tell you the same thing, how the people they've become are so far from where they began. And while it's fashionable and swell to talk about the positive changes and the ways we grow as people, the reality is that we also change for the worse. We harden to the world sometimes. From our positions of desperation and occasional lack of empowerment, we become cynical or jaded. Or even paranoid.

At the very least, we can become overly sensitive.

I can make all the excuses I want about why we reacted the way we did to our first meeting with Schuyler's new mainstream teacher. I can talk about red flagging, which is a very real phenomenon. I can talk about how we truly felt, in that moment, that we were being snubbed. I don't wish to minimize how that can feel, and how very often that is the case with parents of kids like ours.

But the thing I need to do now, most of all, is to apologize to Schuyler's new teacher. I received an email, never mind from whom, that shed a lot of light on the situation, and made me realize that yes, we almost certainly misread the situation. And because I am who I am, I took that misunderstanding and put a microphone in front of it. For that, and for hurting the feelings of a good public servant, I am truly sorry. I look forward to the opportunity to make that apology face to face.

Here's the other thing I need to say. As humbling and even mortifying as it is to come before you and make this apology, I'm still happy to do so. More than happy, I'm relieved and cautiously optimistic. This teacher apparently loves Schuyler, and while I can't imagine she'll ever grow very fond of Schuyler's jackass father, I nevertheless believe that she WILL be open to trying to help us reach our daughter. The fact that my take on the situation was so completely wrong could mean that a different, better experience might just be possible. It's worth a try.

Am I an asshole? I think probably yes. But my daughter isn't (well, not most of the time), and I'm hopeful, even in my contrition, that things might just work out for her.

August 22, 2010

Red Flag

Schuyler begins the fifth grade tomorrow.

So it begins.

I've written at length about the anxiety we experienced last spring in Schuyler's most recent IEP meeting (here and here and here), so you can imagine there's a certain amount of trepidation around here as we start back up. Nothing has really changed over the summer, except perhaps that everyone has had time to either think about what's best for Schuyler or entrench themselves more deeply in their positions.

Well, perhaps some of us have been doing both. I'll own up to that.

A few days ago, Schuyler's school held its annual "Meet the Teacher" hour. It's not a big deal, just a chance to see the classroom and meet with the new teacher and dump off the required metric ton of school supplies. But for us, this first meeting with Schuyler's mainstream teacher has always presented an opportunity to try to measure one thing in particular.

Is this teacher going to understand? Is this teacher going to get Schuyler?

This year, we had an additional concern. At last spring's IEP meeting, we were informed that the school's diagnostician wanted to do an evaluation of Schuyler that she anticipated would result in my daughter being identified as mentally retarded. Furthermore, she expressed the opinion that it was extremely unlikely that Schuyler would ever be fully mainstreamed. This evaluation met with the tacit agreement of the rest of her team. (It's probably worth going back and reading what I wrote at the time, "Truth can be a monster, too".) This year, we're operating under this new reality, or rather this new reality as defined (and data-supported, by golly) by the school.

Schuyler's special education team remains the same this year, as it has pretty consistently for a while. The "Meet the Teacher" hour has always been an important one for us, in that it has given us our first glimpse of how Schuyler's mainstream teacher might approach her. We've had positive meetings in the past, such as last year when her new teacher admitted that she was reading my book in order to try to have a better understanding of how Schuyler works, or the meeting with her second grade teacher, the one who eventually started studying up on brain disorders like Schuyler's and who expressed her desire to continue towards special education certification even after Schuyler had moved on. We've also had bad vibes at these meetings, when we met teachers who seemed friendly enough but who seemed to put up the wall, the one that suggests "You are parents and I am a teacher, and while I don't know for a fact that you are morons, let's just start there anyway." And our impressions turned out to be sadly prescient.

This year, however, we wanted to impress upon the new mainstream teacher that our own personal expectations were going to be much higher than what her IEP indicated. We wanted the new teacher to know that what we wanted, what we expected, was for her to be an overbeliever in Schuyler.

Well, we didn't get the opportunity. To put it bluntly, we were completely and, we believe, deliberately blown off.

When we came to the classroom, the new teacher was greeting and talking to other parents, but from the moment she saw us, she could barely give us the time of day. She was short with Julie for having some trouble with Schuyler's desk, and was unfazed when the problem turned out to be that the desk had been placed backwards. She wouldn't make eye contact with either of us and placed herself on the opposite side of the room from wherever we stood. When I finally walked up to her and began asking questions of her, she answered ONE of them, then turned and actually initiated a conversation with another parent.

It was rude, but more than that, it felt deliberate. She actually refused to talk to me about my daughter. I wondered if I was just being overly sensitive until Julie said, "Wow, I don't think I've ever seen anyone be that rude to you, ever."

I don't know anything about this teacher, other than the fact that she did work with Schuyler a little in a supervisory capacity last year in the after school program. She may feel like she knows all she needs to about Schuyler, and therefore our input isn't necessary. God knows I've met plenty of teachers who wear a very thinly veiled contempt for the parents of their students, and I understand that they've probably got perfectly understandable reasons for feeling that way.

But when I mentioned this on Facebook, one person suggested another possibility. "It sounds like you are what is known as a 'red-flag parent' - you actually want them to do their job, follow the law and listen to you and your concerns," she said. "They don't like that, because it costs them time, effort and money."

That seems a bit extreme, but I don't know. That may very well be the case. And if it is, then fine. I can't believe at this stage that anyone at Schuyler's school would ever think we might respond well to a "shut up and go away" vibe, but sure. We can start this year off like this. We don't have to have the conversation about our expectations for Schuyler's future during the "Meet the Teacher" hour.

We will certainly be having it, though. Sooner rather than later.

When I wrote Schuyler's Monster, I gave the book an ending that felt positive, but not for narrative reasons so much as because that's how our situation felt at the time. Her new school, our new community, all of it felt positive, like we'd begun a new chapter in Schuyler's life. But the reality is that even in a good school, the people who teach a child can lose their way. Even in a home where both parents advocate hard for their kid, they can miss the keys that open the right doors. There aren't any tidy endings or rousing victories. Only the ongoing work, the struggle to get it right, and by doing so, to give her a chance in this rough world.

I know that Schuyler's school district is one of the best in the state, and maybe in the country. And I certainly understand that by now, the teachers who work with Schuyler, including her new mainstream teacher, feel like they know how best to teach her, since they know her and have been working with her for a few years now. But the fact remains that according to their own evaluations and their own observations, the way things have been done haven't been working. With all due respect to the skills and the hard work that have been brought to bear on Schuyler's education so far, I think it's clear that being an "expert" in Schuyler hasn't been enough, either from them or from us. Something has to change, and some kind of new approach is necessary.

And if we have to be red flag parents to make it happen, then we're okay with that. We've done it before.

August 7, 2010

Seven years


Pondering monsters
Originally uploaded by Citizen Rob
Last weekend marked a strange anniversary. Some years I remember it, and some go by unnoticed. Perhaps because the past week has been sort of awful and reflective on a bunch of different levels, this year I've been thinking about it a great deal.

It has been seven years since Schuyler was diagnosed with bilateral perisylvian polymicrogyria.

I think I can safely say that I've never experienced as much change, as much growth and heartbreak and joy and failure and LIFE as I have in these past seven years. In a very real sense, I feel like a different person than I was that beautiful summer day in Connecticut when our world came crashing down around us, albeit soundlessly and invisibly to the rest of the world and particularly to Schuyler. I remember how on that sunny afternoon, she kept spinning in her little private, wordless world, the one she still visits from time to time but no longer seems to live in.

Our world fell apart, but it came back together again, completely different and not pretty, but somehow stronger. The worst case scenarios we were given were mostly not to be. Schuyler has a few things she can't eat and a few tasks she finds difficult to accomplish with her clumsy hands, but she's otherwise completely ambulatory and mostly unmarked by her disability. She sometimes experiences a strange anomalous electrical storm on the left side of her brain when she sleeps, but it doesn't seem to be doing anything other than just happening. Schuyler's not having the seizures that we were told were probably inevitable, and I am beginning to feel ever so slightly comfortable with imagining a future without them ever arriving. School is hard for her, and I am no longer confident that her team really understands her or what she's capable of. But she's also in a good program where even when they get it wrong with her, they are getting it more right than most schools ever would. She's delayed and unable to speak, and she might always be, but she's not trapped in her secret world anymore. She's trying with all her heart to be a part of this one, this beautiful, hateful, hard grand world that has never understood her but which has mostly welcomed her just the same.

As for me, I've come to see my weaknesses, as a husband and as a provider, and as a father. As aware as you may believe you are of the things at which I have failed, I hope you'll understand that I am even more acutely aware of them. But at the same time, I've grown as a person. I've become a better father, and I've learned to trust my instincts with Schuyler, because even when I'm wrong about what she can do, I like to believe that I mostly err on the side of overbelieving in her. I've learned that everyone needs people who love them enough to overbelieve in them. In Schuyler's case, she has a funny way of ultimately meeting those expectations, albeit in her own time and in her own way.

I've learned over the past seven years that when Schuyler stumbles, when she doesn't meet academic expectations or fails to communicate the things that are happening inside her broken but beautiful brain, she usually does so because someone out here in this world has failed her. Her teachers haven't found the tools to teach her or the methodology to reach her. Or her parents have dropped the ball in some way or another, or the technology that is supposed to help her is inadequate to the task.

Perhaps that overbelieving is informing my perspective, but I believe that most of Schuyler's failures are ours more than hers. And in seven years, I've learned to embrace the ancient wisdom of the Chumbawamba. We get knocked down, and we get up again. Oh yes.

Schuyler's diagnosis didn't change who she was. She's had her monster since before she was born, since before she even looked like a tiny little human fetus. She had her monster when she was a guppy, and probably before we even knew she was coming.

No, her diagnosis changed who we were, and who we are today. And if it wounded us, it made us stronger, too. Not like an athlete whose body becomes beautiful and efficient through training and exertion, but like some old scarred animal who has been bitten and scratched and chewed up, but who always comes back for more, desperate to protect its young from the biting monsters and an unforgiving world.

So there it is. Seven years.

Happy anniversary to Schuyler's monster, you motherfucker.

July 28, 2010

"Where justice shall roll down like waters…"


Heathens at the gate
Originally uploaded by Citizen Rob
I delivered the sermon at a church on Sunday.

Okay, I know. But that's not as unlikely of a statement as you might think. I spoke at the Community Unitarian Universalist Church of Plano, so this isn't like, you know, that other time. Unitarians are a pretty accepting bunch. As one of them said to me after the service, "There's a saying that Unitarians are just Agnostics who have kids."

I delivered a sermon, recited a short excerpt from the essay I contributed to My Baby Rides the Short Bus and even read a story to the kids. (A Bad Case of the Stripes, by David Shannon) Everyone was exceptionally nice, I had a lot of very interesting conversations and no one made the sign of the cross or spoke in tongues before running shrieking from the room. It was my first time in a church in longer than I can remember; even my wedding took place in a university chapel, not an actual church. I felt very comfortable there. We might just have to go back for a visit one day.

If you're interested, both my reading and the sermon (which was really more of a speech) are available online at the church's sermon archive.

Immediately after I spoke, the congregation sang what I realized was a very specifically chosen hymn, "We'll Build a Land", that I wasn't familiar with, despite my years of playing church gigs as a semi-professional trombonist. I did a little reading and discovered that the words come from Isaiah and Amos (also the source of Martin Luther King's famous citation "Justice shall roll down like waters, righteousness like a mighty stream").

The hymn is quite simply a call to action. It invokes the same sense of community, of "the village", that I've been speaking about in every speech I've given since my book came out. It doesn't rely on God to make things right, but rather calls on all of us to bring peace and justice to the world. I think Jesus taught the same, not that God would come down and clean up our crappy, angry world for us, but rather that we should live lives that lead to righteousness. We have to take care of each other, and of the afflicted most of all.

Well, that's my understanding, anyway.

We'll build a land where we bind up the broken.
We'll build a land where the captives go free,
where the oil of gladness dissolves all mourning.
Oh, we'll build a promised land that can be.

Come build a land where sisters and brothers,
anointed by God, may then create peace:
where justice shall roll down like waters,
and peace like an ever-flowing stream.

We'll build a land where we bring the good tidings
to all the afflicted and all those who mourn.
And we'll give them garlands instead of ashes.
Oh, we'll build a land where peace is born.

We'll be a land building up ancient cities,
raising up devastations from old;
restoring ruins of generations.
Oh, we'll build a land of people so bold.

Come, build a land where the mantles of praises
resound from spirits once faint and once weak;
where like oaks of righteousness stand her people.
Oh, come build the land, my people we seek.

July 21, 2010

On the eighty-five

I wrote a little somethin' somethin' over at Support for Special Needs, on the topic of marriage and special needs families. Perhaps it's odd, the fact that I was asked to write about an aspect of life at which I have frankly not exactly excelled, but you should never underestimate the power of a solid cautionary tale. I share because I care.

July 13, 2010

Road trip


Smartass fortune cookie
Originally uploaded by Citizen Rob
Schuyler and I are heading back to Odessa, land of my misspent youth, to speak to a book club and visit the fam. Weirdly, this is actually the first book-related thing I've done back home. We'll see if anyone caught that part about "Odessalation" or "Slowdeatha".

A possible added bonus? I might just be playing my trombone in a public place for the first time since the Clinton administration, at the Summer Mummers in Midland on Friday night. We'll just have to see how tragic I sound. It might not be pretty. Well, I think I can pretty much guarantee "not pretty".

Entertaining? Well, in a NASCAR burning-wreckage-flying-into-the-stands sort of way, sure.

June 30, 2010

When large things loom


Us
Originally uploaded by Citizen Rob
When large things loom, it's the small things that save.

Someone recently told me that for all my efforts on Schuyler's behalf, the reality is that I'm the one who depends on her. My happiness, my sense of personal worth, my very identity as a person is dependent on Schuyler and her own success, not just in school but in life.

And I suspect that's absolutely true. Well, I'll go so far as to say that of course it's true. And I also suspect it's something like a universal truth. I imagine 90% of the parents who just read that said to themselves, "Well yeah, no shit."

For parents, that emotional dependency makes life... complicated. There's a fear that grows, for example, out of the risk of loss, or of failure. There are the choices not made, or at least not made easily, because risking your own happiness is one thing, but it's never really just about yourself, is it? And who can ever understand the relationship you have, not just with your child but also with your fear? It becomes like another family member. Or perhaps one more monster.

But there's a flip side to that relationship, that dependency. There's a kind of comfort that comes from the innocence of a child. Their lives aren't easy, but they are pretty simple. They focus like we do, on some level, but that focus comes in the service of a child's world and the basic elements that drive it. It's an intoxicating place to visit.

If you've been following my more recent entries, you've probably noticed a certain level of anxiety in my writing, and in my life. It's been a particularly rough week, lots of fear of loss and anxiety over the future.

But I have a world I can visit, one that's not so full of fear and loss and sadness and regret. It's the same world that Schuyler lived in all by herself for all those years, and its a world that she now shares with me, happily and without guile. Tomorrow, it'll include a trip to Chick-fil-A (which she's been asking about all week) and an early showing of The Last Airbender, which she's wanted to see ever since I first showed her that they were making a movie out of her favorite tv show. That world is going to include a weekend full of fireworks and baseball.

And tonight, as she got ready for bed, that world revolved around a few games of Hello Kitty dominoes, played by a very fluid set of rules known only to Schuyler. I don't know if she knew how much I needed that, but I'm grateful to her for it all the same.

When Schuyler was younger, even before she had much in the way of communication tools, she always seemed to sense when I was running out of whatever that stuff is that keeps you going through the deep water. When I was sad, I could always count on a tiny hand reaching out to me, and a wordless little girl from another world putting that hand on mine.

And tonight, it was Hello Kitty dominoes. Schuyler doesn't understand the large things that loom over her broken father any more than he does. But somehow I think that on some level, she understands better than any person in this world how the small things might just save her dumb lost daddy.

Sometimes, often even, I feel disposable. I think maybe I am. But Schuyler believes differently, and while I think she might be wrong, I'm going to go with her instincts on this for a little while longer.

If nothing else, I'd like to figure out her rules to Hello Kitty dominoes.

June 20, 2010

Fathers, Days


Us
Originally uploaded by Citizen Rob
It's Father's Day, so it's appropriate (and very cool) that I can point you to an interview I gave ("Fathering a Daughter with a Hidden Voice") to an excellent new resource site, Support for Special Needs. It was a fun interview that came out of a nice long chat with Julia Roberts, and I didn't make a single Pretty Woman joke, because I am occasionally capable of being a grown up.

Father's Day can feel a little strange for the fathers of broken children. Most of us feel a little broken ourselves. The reasons for that disconnect might not always be so obvious. The numbers are pretty clear; the primary caregivers for kids with disabilities tend to be mothers, and that's just a fact. I suspect that mirrors neurotypical society, but the fact remains that many, many fathers of special needs children are on the outside looking in on the day-to-day lives of their kids, and often by their own choice. It's a shameful truth, but one that does no one any good to ignore.

I hear it often. "I think it's so great that you're such an involved father!" I see the looks in the eyes of members of Schuyler's IEP team, mostly from the new ones, when I walk into the meetings, and when I speak up, as if they'd almost expect to hear Schuyler talking before a father would. And I see the broad generalizations, even here. In a recent post, when I expressed my own self-doubts and admitted that Julie and I hadn't fully faced some aspects of Schuyler's disability head-on, one commenter just mentally adjusted that and turned it into how Julie is the strong one, no self doubts and no illusions, but me? I was just like this commenter's husband, in denial and uninvolved in the details of my kid's education and care. In her head, the narrative reads that way, and so it became my narrative, too. And she's not alone.

Mostly, though, I get the opposite treatment. Some people treat me like an aberration. I'm like some bizarre extraterrestrial father who puts his daughter's well-being ahead of his own, one who goes to all the IEP meetings and all the parent nights and the playmates. "Here is a father who gives everything to his kid, and puts her happiness ahead of his own! Isn't that wonderful and weird?

Well, I call bullshit.

It seems like almost everyone has so much anecdotal evidence of crappy fathers who don't step up on behalf of their disabled kids. But in the past two years, since my book came out and I began traveling around and meeting other families, it has been my honor and privilege to meet some amazing fathers. And I'm not just talking about the ones who show up to the IEP meetings and doctor's appointments, either. I'm talking about extraordinary dads whose work on behalf of their own kids have changed the world for countless others, too.

Richard Ellenson saw a need for his son, whose cerebral palsy left him unable to communicate and for whom existing speech devices were inadequate for his particular needs. The device he created, the Tango, has been praised for its innovative design and success in social integration of AAC. Dan Habib turned his fight for full integration for his son into a celebrated documentary and an ongoing project at the University of New Hampshire, dedicated to creating and developing more inclusive schools. I've met extraordinary authors and advocates like Rupert Isaacson and Michael Greenberg. I've been in the company of some amazing fathers.

Amazing fathers, and yet they're exactly like all the fathers out there who work tirelessly for their children with disabilities. What sets these fathers apart, in my mind, is that rather than trying to find a way to fit into our society's narrow idea of what fathers are supposed to do, they've taken their talents and their abilities and they've forged into territory that hasn't always been welcoming to them.

Plenty of fathers don't do that. Is that because some of them are crappy fathers? Of course. But how many fathers respond to the low expectations of our society and our system, one that assumes that the mothers of these kids will be the ones who will take care of them? How many fathers go online to find information and end up on page after page of resources for Special Needs Moms? How many read the poems about how special those moms are, how hard they work and how they are the only ones these kids can count on? I know I see those sites and those posts. I see them every day, and even now, after everything I've said and done and written, after as many speeches as I've delivered and as many books as I've signed and as many IEP meetings I've attended and been a pain in the ass in, even now, I still hear the tiny voice in my head, the one that whispers "Your presence is not required. Your input is not necessary."

Look, fathers need to get involved. Fathers need to step up and take on their share of the work. That much is clear. That's not just in the disability community, either, but I believe it's even more critical that it happen in these families. This isn't an episode of Mad Men; the old models of fatherhood no longer work. I'm not sure they ever really did.

But there needs to be an accompanying significant shift in our societal attitudes. There has to be a change in how fathers are seen. Fathers of broken children aren't volunteers. We don't want partial credit just for showing up. And we don't want a pat on the head. We want to be involved. And we should be. You as mothers and as society should have the expectation that we're going to be, and with that, you need to be willing to step back and let our talents shine, let our unique perspectives contribute fully.

I think you might be surprised at what you get in return.

June 9, 2010

And then it was summer.


(The perhaps inevitable result of scented markers and fine motor control issues...)

---

First of all, I've posted my monthly essay on Hopeful Parents. Not a long or particularly profound one this time, but it's what was in my head and so there it is. Sometimes the thing I need to say is as simple as "Hey. Cut it out."

Schuyler has begun her summer with us, and we're walking a fine line between "Whee! Isn't summer FUN?" and "Holy crap, we've got a lot to do. Here's your homework for the rest of the day. Do it now, and maybe you can catch the last dying rays of the sun before it's time for bed."

The trick, I think (hope), is to keep it interesting, and so far I think we're doing okay. Schuyler's new fascination with email means that when I send her a random funny photo and ask her to reply with a story about it, she's into the task. In the same vein, math puzzles, ebooks, word games, all hold her attention when they are presented on her iPad, which is turning out to be an even better tool for her than we'd anticipated.

She comes with me to my office on days that I work, and she draws or writes or reads, or otherwise amuses herself on her iPad. (Thank you, streaming Netflix.) We talk a lot and we wander the campus when one or both of us needs some air. My new office is down on the bottom floor, in the back of a student computer lab that is closed during the summer, so it's quiet while she's here. I'm happy to have the company.

So this is our summer. Mostly I find myself focusing on being fun and engaging with her, and trying hard not to let on that in ways both large and small, and both fleeting and forever, I feel like my world is slowly falling apart around me.

June 3, 2010

Schuyler's Poetry Book


Schuyler has been writing poetry in school, accompanied by her own drawings. I'm not under any illusions here; aside from perhaps the one about the fox (which is also my favorite), these poems are clearly the product of a LOT of guidance and help from her teachers.

What keeps it from being "macaroni art", in my opinion, is the fact that the concepts and imagery should be very familiar to anyone who knows Schuyler. It's all hers.

(Just this once, I'm going to keep comments closed on this post. I wanted to share something special instead of just my insecurities, as a break from my self-indulgent writing of late. Either you'll enjoy it or you won't, but I don't need to know either way. I know how I feel about Schuyler's work. And that's enough for me.)



COUPLET

I heard of a fox
I opened a box.
I heard of a fox
He's wearing my socks.
I heard of a fox
He jump and he knock.
I heard of a fox
He has the pocks.




HAIKU

Puppies
Puppies can look sad.
Puppies are like little dogs.
I like to hold them.

Pasta
Ravioli rocks.
Ravioli is awesome.
Cheese filled pasta squares.



"Queen of this whole world."



QUATRAINS

I went on the field trip.
I ate a cookie and a chip.
I wanted to give a big cheer.
When I saw a pretty deer.

I ate a cookie that was chocoate chip.
I found it on a pink spaceship.
Through the air the ship went zip.
I am going on a trip.




June 1, 2010

Alamo

It has been noted that my last two entries ("Truth can be a monster, too" and "A question of faith") are almost completely contradictory. They are. They are also both entirely accurate representations of my emotional state at the present time.

Funny how that works, the whole "people are complicated" thing.

The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.

But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.

And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.

On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.

If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de BĂ©xar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.

But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.

I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.

Like I said, that represents a not-so-good day.

May 29, 2010

A question of faith

So yeah, it's been a rough week.

We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".

It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)

But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.

They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.

Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.

Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.

Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.

According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.

Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.

Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.

The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.

We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.

What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.

Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.

I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.