The Thin Line Between Wrong and Wrong

Today at Support for Special Needs:

But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.

"...and my heart is closing like a fist."

Schuyler and I are at a quiet burger place. We're having a late lunch after working on a homework project most of the afternoon, and there are only a few other people here. The burgers are good, and they have wi-fi and milkshakes. She's on her iPad watching Netflix, and I'm on my laptop catching up on some work. It's not perfect, but it might be close.

The doors open, and a high school cheerleading squad enters like a tsunami, followed by their parents and friends. The parents are almost comically loud, and the boys are posturing and preening with a forced casualness. The girls are energetic and interchangeable, matching uniforms and identical hair and high wattage smiles. They have quintessential Texas suburban names like Brooke and Madison.

The noise is intense, that much more so for the contrast with the near silence only a few minutes before. I hunker down like a curmudgeon, but Schuyler simply ignores the swirl and noise at first. She's engrossed in whatever movie she's watching. It occurs to me that five days a week, she occupies a world full of teenage chaos. She's unflappable.

Eventually Schuyler begins to watch the kids as they run around, groups forming and breaking up and reforming minutes later. I realize as I watch that this is how I'd hoped Schuyler's cheer squad would behave this year. All my misgivings about Schuyler becoming a cheerleader had been balanced by this idea of a bond between girls, a protective group dynamic. I can see it in this group, in ways that I never saw it in Schuyler's squad. Here there are no outliers, no girl trying to fit in, attempting to join the discussions before finally sitting apart.

There's no Schuyler in this squad.

I can't imagine what Schuyler is thinking, although it is clear that she's very deep in thought. I sneak a few photos of her, trying to catch the reverie in her eyes. I think I manage. When I show her the photo I like the most, she smiles. I ask if I can post it, as I always do, and she says yes.

"Does this remind you of your cheer squad?" I ask her.

"A little," she says. "They're having fun. I wish we had fun."

She watches the girls a bit longer, and her face isn't sad so much as resigned, perhaps. The day before, she and Julie went on a trip with Schuyler's middle school band to a local water park, and the report back from Julie was reminiscent of the year before, and the year before that. It was a repeated sequence, Schuyler trying to break into a group of friends and running with them for a short while before being left behind. Schuyler can be a hard kid to be friends with, I understand. She's excitable and handsy, in that way that many nonverbal kids can be even after they grow older and develop speech. Crucial early childhood years with no expressive language have trained her to communicate with a kind of physicality that can be awkward now that she's a teenager.

Now, the next day, she has withdrawn into herself, not morosely but with a kind of sigh. This is the cycle of Schuyler. She tries to integrate socially, she succeeds at first but all too soon falls out into solitude, and spends some time regrouping before going back into the fray. It's not all because of her disability, I know, because I function in much the same way, and today, Schuyler and I are both turtles pulled into our shells.

Seated in the middle of this cacophony, we've got our walls up. And it's okay. It's not ideal, but it's what we need.

Borrowed Happy

"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." 

- Stephen Chbosky, The Perks of Being a Wallflower

This is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.

I've been thinking about happiness lately.

(Because of privacy rules, this paragraph is going to be vague. Sorry, I know that's irritating.) I recently embarked on a venture of sorts, one that I thought might lead me down a new path, one that would make me genuinely happy. It ultimately didn't, and I'm taking that failure particularly hard, I won't lie. I feel foolish, and I feel disposable, and if there's a worse way to feel, I'm not sure what it might be. I aspired to something, and my wax wings melted pretty quickly.

The thing is, and I think this is significant, I can't remember the last time I did feel authentic happiness. I know it's been a very long time. If the idea of being truly content with my place in the world is so elusive that I can't even tell you how long it's been, I guess maybe that's an issue. I thought I could see the path until this week. I can't, though.

It's important to note that I'm not some sad mopey bastard with not an ounce of happiness in my life. I think rather the opposite. And when I find my confidence again, as I will shortly, I'll be fine. But it's an undeniable truth that the true satisfaction I find myself feeling is almost always a result of Schuyler's happiness. It comes in things large from time to time, but it's mostly the small joys. A monster movie well-realized. A trip to a comic book store that neither of us expected until we found ourselves standing outside. A joke we've told each other a thousand times. ("Knock knock!" "Come in!")

Schuyler experiences joy, and as a result, I feel some of that reflected warmth as well. I suppose, like a lot of parents (Julie very much included), my own happiness has probably become too caught up in my kid's. I've become dependent on the borrowed happiness I get from her.

If that sounds desperate or sad, I guess perhaps it is. But as I stand here at the end of a shaky week, it might just have to be enough, at least for now.

Advocacy, with Heart

Today at Support for Special Needs:

There's a balance to be struck, I imagine. We don't want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our intuition to guide us.

On Early Intervention

Today at Support for Special Needs:

When Schuyler was born fourteen years ago, she was (perhaps irresponsibly) placed into the hands of two people who lacked even the most basic experience with a baby. To make matters worse, at least one of those people was an idiot. (SPOILER: It was me.) I shouldn't admit how many times I looked at Schuyler and simply said to myself, "Oh my god, I have a baby and she's still alive. This is one lucky damn baby."

This Is Only a Test

Today at Support for Special Needs:

In Texas, our kids take the STAAR test, which replaces the TAKS test, which was probably preceded by the CRAAPS test and the BUUG test. I have no idea what STAAR stands for, and I refuse to go look. It stands for "The Test That Will Take Hours and Days of Actual Instruction Away From Your Kid, Stress Them Out In Ways You'll Probably Not Grasp Until They Go Into Therapy or Rehab or End Up on the News With Helicopters Circling Your House, and Provide Politicians With a Way to Sound Like They Care About Education But Most Assuredly Do Not."

Stumbles

It was a rough week. I won't lie. It was rough for me, and it was even worse for Schuyler. One thing I can say for certain about this week, however, is that if bad days offer the chance for learning, I feel like we all had some graduate level education going on. I feel like we should be wearing those little flat hats and robes and jabbering in Latin.

Most of all, we learned that the structures we come to depend on can be unreliable at best. We were reminded that in the end, we can depend on each other, and sometimes that's all.

There are a lot of very individual stories I could tell about last week, but they wouldn't be of much help to anyone reading. Schuyler and I were both actually threatened, individually and in unrelated circumstances, in ways that left us both a little twitchy. That doesn't actually happen very often, to either of us, which is obviously a good thing, but I'm not sure either of us knew exactly how to respond. We didn't fight back, either of us. For that, I'm proud of her and ashamed of myself.

Without getting into details that are not entirely ours to share, I'll simply say that Schuyler learned how friends can be very unfriendly indeed, and perhaps that her own sense of what true friendship looks like needs some new layers of subtlety that don't come easy to her. I think Schuyler learned that school isn't always a place of fairness, and that sometimes she might find her sense of justice bruised by the "path of least resistance" decisions made by the adults around her. As far as important lessons for adult life go, I suspect that's an important one, but I hate watching her learn it.

I learned some of the same lessons, perhaps. As special needs parents, we become accustomed to the idea that the teachers and administrators and therapists who work with our kids stand on certain principles of behavior. We forget, until we're very dramatically reminded, that those professionals are also human beings. They have insecurities and they have tempers and they have blind spots where they cannot gaze for long with an objective eye. They can do solid work but still stumble.

That doesn't make them bad at what they do. If it did, I would be run out of proverbial town on a proverbial rail. Mine is a most personal kind of writing, and my reactions to the world around me are rarely divorced from my emotional responses. That can be hard for parent advocates, but I also believe it's what gives our work a unique kind of value. Professionals work hard for our kids, but they're also invested deeply in their reputations; parents are invested in not screwing up our kids. Unfortunately, that's probably sometimes at odds with our commitment to being correct in our approach. Our strengths can be our weaknesses; our love can make us stumble, too.

This week, I learned most of all how very human we all are, and how that humanity can be the root of so much failure when it comes to doing our work. Schuyler learned that lesson, too, although for her, I suspect it felt like a lesson in the smallness of those of us who profess to, and occasionally even manage to, work to make her life and the lives of her friends better, richer, more fair, more MORE.

Schuyler ended the week owed more apologies than she received, and as her father, that's hard to bear. I made choices for myself that were about peace rather than justice, but I at least fought similar decisions made in her life. I can at least say that. And thanks to a very dedicated teacher who listened to our concerns and went way beyond what she was required to do in order to address those concerns, and on a Saturday night, no less, we were reminded that there are a great many professionals out there who do this work for the best of reasons, and they do it better than I could ever hope to.

It was not a bad way to end a week that went on far, far too long.

The Things We Know

Today at Support for Special Needs:

The challenging aspects of being the parent of a special needs kid aren’t always the things you don’t know, although believe me when I say those are bad ones, like "stay up late and start drinking early" bad ones. Sometimes a greater source of parental frustration comes from truly knowing your child, in a way that is simply impossible for a doctor or a teacher or even a family member, and having to work tirelessly to be taken seriously.

The Exquisite Joy of Nothing

This week at Support for Special Needs:

This week, we didn’t struggle to understand her, we didn’t have to manage seizures, and there were no bullies to deal with. The Internet wasn’t buzzing with an unusual amount of outrage, and despair felt far away. It was a week where nothing of particular note occurred in relation to Schuyler’s disability. For families of kids with special needs, this can be a rare treat. A week without an easy blog topic is itself worthy of note.

The Long-Abandoned Path

Today at Support for Special Needs:

Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is.

Archipelago

Today at Support for Special Needs:

We're already on islands, many of us, but not in a vacation wonderland kind of a way. Our islands aren't floating in a remote blue tropical sea. They exist in plain sight, in the middle of your towns and workplaces and schools. Most of our territories are invisible; you can barely see the fences unless you look closely. And most people don't look that closely.

Twenty-four years ago today

It's still complicated.

A Genuine Advocate and a Frank Conversation at SXSW

Today at Support for Special Needs:

I’d never heard anyone come out and admit that their company had been spooked by the internal divisions of the disability community and the enthusiasm with which we seem to embrace the concept of the circular firing squad. But it was also deeply depressing to be reminded that the world is watching.

Great Expectations

Today at Support for Special Needs:

I’m writing about what I’m feeling here because I think it might be almost as common among special needs parents as that early grieving process. When we buy into a Way That Things Shall Be, it can be hard to let that Way go. Harder than even we realize, because there are so few narratives on which we may depend, and when they disappear, blown away like morning fog, there’s not much in our reserves to take their place. The Way was important, and the Way didn’t work out.

Hunting Monsters at SXSW

Today at Support for Special Needs, for those attending SXSW this week and next:

If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation.

Help Wanted

Today at Support for Special Needs:

She sees her future work life as an abstraction, probably because at her age, the future seems limitless. She believes that whatever she's going to do with her life is a choice that is firmly in her hands. But for Schuyler, and for kids like her, that future may not actually have that many options.

Schuyler's Brain

After Schuyler's most recent visit to her neurologist back in December, we were given a cd with images from her MRI. In what felt like a flashback to 1995, the cd wouldn't open on our Mac, much less the app that displays the images. We picked it up during the holiday break, so I couldn't take it to work and try it there. We'd already received the pertinent information from Schuyler's neurologist anyway, so there wasn't really anything to be learned from seeing the images. By the time the holidays were over, the cd sat on my desk, patiently waiting for me to remember to bring it in to the office with me.

It ended up waiting until this week.

It brought the cd to work with me, along with Schuyler, who had the day off from school. It was President's Day, an important national holiday which she celebrated like a serious citizen by bingeing on unwatchable Disney Channel programs on her iPad and eating all the snacks in the building. As she sat in my office with her iPad, I stepped down the hall and had a friend open the MRI viewing app on her PC.

And there it was, again. Schuyler's brain, ten years older but still looking, you know, brainy. There were two different versions of the scan side by side, one presenting as bright features and high-contrast regions, and the other more subtle, showing the details of her brain, the folds and the blood vessels.

Even at a glance, as I watched the layers go by, I could see the thing that has bedeviled my daughter and shaped her world and her perception of that world since before she was born. Slightly behind her temples, on both sides. It was faintly visible on the more subtle image, but stood out as a white featureless area on the other, in contrast with the rest of her brain.

I texted Schuyler and told her to come to my friend's office. When she walked in and saw what was on the screen, her eyes widened. She knew what it was immediately.

"Do you know what that is?" I asked.

"My brain?" she answered.

"Yep, that's your brain. And what's that?" I asked, pointing to the two bright regions on the sides.

She hesitated, and then said "My little monster?"

Her little monster.

She was both fascinated and a little grossed out by the images, especially as we moved through the scans. ("Look at your eyeballs, Schuyler! Look at your teeth!") She watched for a little longer and then went back to her crappy tv shows, her curiosity satisfied.

I have to be honest. I could look at those images all day. Not for the information they contain; we'd already gotten a rundown of all the news, which wasn't all that much anyway. But exploring the physical reality of Schuyler's brain is to tangibly experience a place that has been the center of our family's universe for the past decade, but in a largely metaphoric way. It's not just Schuyler who sees her brain as a mysterious but cool place where a tiny monster lives and throws chaos into her path now and then. To actually see that place is a little like getting satellite photos of weather patterns in Middle Earth.

It's easy to forget that all the challenge and all the wonder of Schuyler, the parts that are broken and the parts that are inexplicably working anyway and the things that are the perfect center of my life, it's all there, in that little ball of meat and electricity. Just a simple thing, and yet the most complex organic structure in the world. For Schuyler, more complicated even than most.

Schuyler's brain is malformed, and significantly so. It has changed a little, but not in a way that concerns her neurologist. The regions affected by her polymicrogyria remain essentially unchanged since 2003, as they will remain unchanged for the rest of her life. Those parts aren't doing nothing, and much of their impairment seems to have been taken up by other parts of her brain. But how that rewiring happens is a mystery. Schuyler's original doctor admitted that where the brain is concerned, even the most advanced medical giants in his field were not much more knowledgable than ancient village shamans. We know what Schuyler's brain is doing, but we have no idea how.

Schuyler's brain is where her monster lives. That's what she says. She embraced the metaphor from the title of my book, and she took it to heart. She imagines her monster, tiny and bug-eyed and fierce, sitting in its little comfy, overstuffed monster chair, and it watches her. It pushes buttons on its big monster console and creates the fog that impairs her thinking. It presses another button and disengages clarity in her speech. It pulls a lever and conjures earthquakes now and then. She doesn't like her little monster, and on the hard days she comments that it doesn't like her, either. She never says she wants the monster gone, however. She accepted long ago that she and her little monster are going to be engaged in this uneasy, awkward dance for the rest of her life.

Schuyler's brain is where her world is constructed, like a template that sits atop the boring one the rest of us occupy. Her world contains big monsters, too. Some of them consist entirely of shadows that only she can see, with the aid of her special goggles (left over from her Amelia Earhart costume from a few Halloweens back). Her world is one in which lights passing overhead in the night sky might belong to airplanes, but are just as likely to be part of a spacecraft bringing aliens to our midst. It's a world where her father might just be a werewolf, which suggests that as my daughter, she might just have some howling and adventure ahead for her as well. Schuyler isn't delusional; she understands that these are constructs. But even now, she brings her world of play wherever she goes, and the invitation to visit her there always stands, for anyone willing to put on a pair of monster hunting goggles and join her.

Schuyler's brain is a place full of contradictions. In that brain, the people she meets are potential friends, and she constructs those friendships mentally long before she makes them. But that brain has a difficult time building those friendships, and so she stumbles, is socially awkward, because she doesn't quite know how to bridge that gap, the one that her monster excavated and the one that she probably just comes by naturally, too. Schuyler is both boisterous and shy. One day she'll make some forever friends. One day she'll find that forever boy, or forever girl, and when it happens, it'll be because that person will see Schuyler's worth, and so he or she will do the work that comes with communicating and negotiating and working out the mysteries of Schuyler's brain.

When I look at the pictures of Schuyler's brain, I see a universe contained inside a perfect little girl's head. And I see the very center of my own world. It's a puzzle and a perfect vacation spot and a remarkable learning lab and a battleground. When I think about that brain, in all its corporeal mass and its indescribable spiritual vastness, I can only say that I love it, with its imperfections and all its beauty and its immeasurable possibilities. It is in fact my very favorite place in all the world.

Diversity in Language

Today at Support for Special Needs:

As parents of children with disabilities, we are constantly looking for the word choices that reflect not just our kids’ reality, but also the dignity and the hope and the possibilities that we hold as a kind of sacred trust.

Monsters Who Smile

I'm sorry if you're getting tired of this story. I actually wrote this last week. One of the pitfalls of a weekly column, I guess. Anyway, today at Support for Special Needs:

But being Schuyler’s father has also shown me, again and again with stark clarity, that there really are monsters in this world, and some of them smile pretty smiles and take your daughter by the hand if you let them, and God, do I hope I’m alert enough to know those monsters when I see them.

You're worth what you're worth.

Today at Support for Special Needs:

My fears for that future, and they are legion, have little to do with what Schuyler will be able to do, or what her worth to the world might be in measurable values. My fear is rooted squarely in those who hold her future success and those of her friends in their hands, and whether or not they truly understand the value of what that means.