Dispatch from the Land of the Eighty-five Percent

So. I suppose we have some catching up to do.

Schuyler and I are in Virginia. Where we live.

Well, that's partially true. Schuyler lives here half the time, splitting her time from month to month with her mother, who now lives in Michigan. It's not complicated on paper, as divorce rarely is, but in practice it's probably going to be fraught with unforeseen peril, as divorce almost always is. I have Schuyler here with me for one more week, and then my month without her begins. I think we can all predict how well I'll take that, but there it is. The price of change. Perhaps it's the fee for exchanging the predictable ennui of an unhappy but drama-free marriage for a happy life full of wild promise but no guarantees.

For Schuyler, it has been a challenge, but one that her mother and I have committed to making as seamless as possible. Schuyler knows one thing beyond all denial. She is loved. Her parents love her deeply, of course, and I hope the gradually expanding circles of new friends and new family will mean more love, more support, more eyes and hearts watching out for her. There's a lot about this situation that isn't ideal, and her parents' family/friend circles barely intersect (to put it nicely), but for Schuyler, I hope, the negative parts don't touch her life very much.

I keep using that phrase. "I hope."

For a very long time, as long as I've been in the world of disability parenting, there's a statistic that has dogged my family, and all families like ours. You've heard it. It's the one that states that 85% of marriages involving a child with a disability end in divorce.

The interesting thing about that statistic isn't that it is almost certainly apocryphal. It's been recognized for a while now that it's a much more complex situation, and the numbers vary wildly depending on the particulars of every family. Some studies suggest, for example, that parents of kids with Down syndrome are actually less likely to get divorced than average, possibly because they tend to be older and usually married longer. I suppose they get the marital bugs worked out before the more challenging work really begins for them. 

No, the interesting part to me isn't that the 85% divorce rate is almost certainly unsubstantiated. The thing that feels significant to me is that almost universally, at least in my experience, married parents of kids with disabilities hear that statistic and say, "Oh yes, I can believe that." It resonates for a reason.

Tolstoy wasn't wrong when he wrote in Anna Karenina that happy families are all alike, but every unhappy family is unhappy in its own way. (Russians know their stuff when it comes to unhappiness, am I right?) I'm not for a moment suggesting that having a child with a disability makes for an unhappy family. For myself, Schuyler has been the source of inexhaustible joy, and remains so to this day. But the pressures that weigh on families like ours can be daunting, and hard to see sometimes. 

I guess without digging into the details of the Rummel-Hudsons, which are not mine alone to share and also Nunya, I can simply say that Julie and I gave Schuyler and her life everything we had, which was both appropriate and our extreme honor and privilege. In the end, it turned out that we hadn't given very much to each other, not for many, many years. I'm not sure I'd call it a failed marriage -- I don't think many of you could look at the young woman Schuyler has become and conclude that we failed in some meaningful way -- but after twenty-one years, it ran its course and largely ran out of juice in the process. I hate the saying "It is what it is", but I'm not sure I have a better one.

So now we start anew, with Julie back in the land of her youth with her family, and me in a new world, living in the Washington DC area with a woman who adores Schuyler and who loves me unconditionally despite my encyclopedic list of faults. We also have a bit of a Brady Bunch scenario with our kids. Schuyler always wanted brothers and sisters, something she was denied by fate and incomplete medical information, but she's getting them now. Slowly, she's figuring it out and finding family she never dreamed of.

I think it's going to work out. I think it's going to be extraordinarily good.

Schuyler is a wonderful person, the finest human I know by a country mile, but she's not easy. She's a bit of a mystery box, presenting as childlike in some ways and then remarkably beyond her twenty years in others. The whole "this person with an intellectual disability presents as such-and-such age rather than their actual physical years" has never been a very good model for most people with developmental disabilities, and it's particularly unhelpful where Schuyler is concerned. 

Schuyler is almost unwaveringly positive, except when she plunges into occasional depths that seem, in the moment, unrecoverable. She loves with her whole heart, almost distressingly so for me, but she tends toward paranoia and can hold a grudge like no one I know (except perhaps her old man). Most of all, Schuyler sometimes finds herself in the grip of powerful emotions that she doesn't entirely know what to do with. I can try to prepare people for what she's like, but there's really only one way to learn. You jump into the deep water where Schuyler swims, and you figure it out in a hurry.

In some ways, that's where we all are, in the daunting part of unfamiliar waters. But they're not treacherous waters, and they're not stagnant. If I had to sum up the state of affairs right now, as we all find our way in different parts of the country and different regions of our hearts, I guess I'd simply say this:

Everyone is doing the very best they can.

And that's no small thing.

Polly at Seventeen

Today is the seventeenth anniversary of Schuyler's diagnosis of polymicrogyria.

There have been times in the past seventeen years when that felt like a thing to be memorialized, a great tragedy like a hurricane or an assassination, both of which feel like an appropriate description of how it felt to stand in the face of such an event and watch someone I loved taken away from me.

But over the years, I guess that's changed, or at least blunted. Schuyler wasn't taken away by her diagnosis. Her little monster didn't arrive that day; it merely stated its long-overdue "How do you do?" I thought I learned about the future that day, but all that really happened was I found out about a journey. Her diagnosis put coordinates into my emotional and spiritual GPS. It said nothing about the destination.

On this day of memory, of thinking back to that awful afternoon in the pediatrician's office at Yale as I saw that brain scan and Schuyler's unwelcome passenger for the first time, Schuyler goes back to work at KidZania and prepares to depart Texas for new adventures next month. Her little monster comes with her, of course, as it does everywhere and always will.

But the important thing for me is this: PMG comes with her, but it doesn't get to drive. And it doesn't get to define her, either. It wasn't that long ago that it felt like the thing that controlled her life.

Now? It's just a thing.

A Short Ride in a Fast Machine

There’s a dream I’ve had repeatedly in my life, including quite recently. In this dream, I am driving down a long, remote West Texas road at high speed, with no other cars around me. I’m going fast, in that way you hurtle forward on a desert highway when the perspective tricks you into picking what feels like leisurely pace until you look down and you’re doing ninety miles per hour. The sun is setting, the sky exploding in reds and oranges and a deepening purple.

Suddenly, without warning or drama, the wheel comes off in my hand. I’m holding it, gripped with panic, as the car continues down the road. I hit the brakes but of course they do nothing. In my dream, I know they’ll be unresponsive before I even touch my foot to the pedal. The car rockets down the road, still following its straight line, but with no indication of what’s to come. That’s my dream, and it’s almost embarrassingly transparent, but then I guess my dreams have never been subtle.

The past few weeks have followed a disquieting theme. Last month, one of my very best friends from Interlochen died, out of the blue on the other side of the world. He was young, forty-five, an esteemed musician who was apparently universally beloved. He was handsome and fit, he looked like Captain America, for fuck's sake, and in a horrible instant his heart, that most unreliable of organs, turned on him, and he was gone. Just like that. His sudden death was inexplicable at the time. It remains so today.

Last week, a friend from high school was also suddenly taken, also by an uncooperative and unforgiving heart. And last night I learned that the first band director to ever hire me as a low brass teacher back when I was in college died over the weekend. I guess I’m at the age now where I have more funerals than weddings in my future. It’s not a trend I’m enjoying.

Through it all, I live.

Tomorrow is my birthday. I’ll be fifty-two, assuming I make it through the rest of the day today. (I like my chances.) Fifty-two is an age my poor wretched father never got to be, and honestly, there were times this past year when I felt like I might miss out as well. But I’m here. I live. My own problematic heart keeps showing up for work and powering me through. Every morning I get out of the shower and catch a glimpse of myself in the mirror, with this ugly scar that’s much less daunting than before, but which still tells a story I’m not sure I understand--not after losing my friend. How is he gone and I’m still here? I’m not sure it feels unfair, exactly. It just doesn’t seem to make sense.

I started running a few months ago, with the encouragement of someone who is entirely uninterested in attending my funeral. I never thought I’d be a runner, and to be clear, I’m a terrible one. I lurch forward like the undead, slowly and gracelessly, and I only emanate real joy when I collapse at the end. But I finished a 5k in September and am planning on more. Every time I step on the road, it feels like both an encouragement to my potentially murderous heart, and a defiant gesture. Come on, motherfucker. We’re doing this.

The past nine months (has it really been that long?) have felt as chaotic as any point in my life. And yet, I’m not sure I feel like the wheel has come off in my hands, not exactly. I don’t know, maybe it has, but with the possibility that veering off the road might lead to something surprising and fulfilling and not just a fiery death. It’s certainly true that the wheel hasn’t just come off in my hands. I wrenched it from its place, with purpose and selfish abandon. If I do hurtle off a cliff, I have no one to blame but myself.

Through it all, the primary thing in my life that has given me purpose remains the most important part for me, and it’s also the most chaotic. Schuyler remains, and she moves forward into a future that is now very much her present. If my future is unsure, if it’s to be glorious or a cautionary tale, a lengthy journey or a short ride in a fast machine, that life is always going to have her at the center of it all for me. And that’s something I draw a great deal of comfort from.

Schuyler turns twenty years old next month. Stop for a moment and consider the unlikely sound of those words. Some of you have been reading since before my book and even before her diagnosis, all the way back to the beginning. You’ve been reading this story for twenty years now. I assume you’re starting to feel some aches and pains in your bones now, too.

After ending her internship and briefly working at a hobby store in a position that turned out to be an almost cliched example of what disability employment looks like to far too many people, Schuyler interviewed at and was immediately hired by a place called Kidzania. Follow that link, and imagine a place where kids 14 and younger get to explore their possible futures in the most over-the-top and ridiculously fun way possible. It’s as if Willy Wonka changed jobs and became a career guidance counselor.

Schuyler moves through this new world with a skill and a grace I frankly worried she might not ever possess, to my deep shame. She communicates verbally now with a clarity that belies the years she spent modeling with speech tech and working with speech language pathologists. She makes choices that are good ones; smart ones. At Kidzania, it was her suggestion that they spell her name “Skylar” on her badge so that the little kids she works with will have an easier time with it. Most of all, she’s handling some tough family stuff with maturity.

As I told her last night, I always wondered about the adult she would one day become. And she has turned out to be exactly the young woman I always hoped she would be.

The future is as uncertain as it’s ever been, for me and for Schuyler and for the people we love around us. But I’m going to dare to hope that it’s going to be okay. I’m believing in that, and willing it with all the energy I possess to be so.

Sixteen Years of Monster Life

Sixteen years ago today, everything changed. I mean, nothing changed, but everything changed. 

Schuyler was diagnosed with polymicrogyria on this day in 2003.

I think back to that day sometimes, a day that I described in the prologue to my book. In a lot of ways, it marked an end to the person I was at the time, probably a lot more fun but also more selfish and seriously lacking in self-reflection. It also began my transition to the person I am now: smarter, more sensitive to the people around me, more socially aware and a stronger advocate, but also more cynical, more curmudgeonly, a bit of a scold and a wet blanket, and like every single special needs parent I know, poor (the only special needs parents who have a little money are the ones that started off with a LOT of money) and tired. Face more lined, body more worn, bank account less robust. 

Disability parenting is rewarding, and I wouldn’t trade my life with Schuyler for anything. But it puts miles on you, and they are city miles at that.

I’m writing about how that day changed me because mine is the story I can tell. What did it mean for Schuyler? She doesn’t remember it, of course. She was three years old, after all. Her little monster has been with her from birth and before, of course, but it’s also been a known adversary for as long as she can remember. For Schuyler, an accurate diagnosis meant a corrected and appropriate course set for her future. School, medical evaluation and treatment, therapy, life planning, all of this began in earnest with that diagnosis. For her, it was an entirely good thing.

And for me? That’s more complicated, I guess. That day made things harder in my life, it took away options for a narrative of success that our society values and that I would have valued as well, and it broke my fucking heart right in two. That break healed, but god, the scars it left.

New Haven, CT (August 2003)

But Schuyler’s diagnosis made me a better father. It unlocked a level of empathy that I’d shamefully kept closed for most of my younger, stupid life. Because she was never going to talk like everyone else, I became a good listener, and a devoted and skilled interpreter of her odd but beautiful way of speaking. I became sadder, but I also learned to appreciate real, authentic joy. I learned that the world is a hard place for vulnerable people, but it’s also richer and more beautiful than I ever imagined at a cursory glance.

And I learned how to write, and maybe helped some people.

Would I change anything? It’s tempting to say that if I had the power to change Schuyler’s development in utero and let her have the brain she was supposed to have and the life she could have had from that, then yes, I would absolutely change that. I know that’s not the accepted disability advocate position to take, but I’m just going to have to be honest and say that I don’t care much about getting that right every time. If I could change that for her, I might. That’s just the honest truth. Schuyler was robbed, and I’ll never ever be entirely okay with that.

But having that power taken off the table, would I do things differently? Would I surround Schuyler with different people and explore different paths? Yeah, I would. But I also wouldn’t trade one moment, not a single second, fighting for her and stepping on toes and most of all immersing myself in the world of Schuyler.

If I could do it again, I’d spend more time with her. We’d watch more monster movies, we’d eat more ice cream (sorry, doctors), we’d travel more, see more places, breathe more country air, visit more museums, attend more concerts, make more friends, love more people, pet more dogs, read more books, do more THINGS.

Funny thing about that list, though. We can still do all that.

New Haven, CT (August 2003)

Three Weeks Broken

Here’s a fun fact that I just recently learned. When they (the people who make up such things, almost certainly with a clipboard in hand) determine survival rates for people who survive procedures such as open heart surgery, they don’t just count those who made it off the table and back to their rooms. For some major categories, they actually measure the rate of survival for thirty days, beginning with the surgery and ending with the cake decorated with “ONE MONTH DEATH-FREE, WOO!” in heart-healthy icing on top.

So this is perhaps a bit premature. Watch for a posthumous “edited to add: Oops, never mind, yikes…” But for now, tonight, three weeks and a couple of days after I voluntarily allowed someone to take a little buzzy saw to my sternum and open me up like a piñata, I’m going to risk the jinx.

I’m still alive.

But Jesus Howard Christ, do I still hurt.

---

What did you do for Valentine’s Day? Something nice? Something boozy? Something resentful and Netflix-y?

I showed up at a fancy hospital with a cute but gigantic heart logo on the outside of the building and a serious commitment to branding (the restaurant is the Heart Rock Cafe, I kid you not) and had me some heart surgery.

As it turned out, I got the deluxe package, the quadruple bypass. (Is there a quintuple version? Did I get ripped off?) This sounds both a little badass and vaguely awful, like something you get if you are in an emergency situation. Or, you know, if you are extremely elderly.

But the truth is, the surgeon got in, started poking around at my shitty, shitty heart and decided that it looked better than he expected, but since he was already in, what the hell? Just as easy to do them all, right? So it was perhaps less “oh my god, quadruple bypass for the old fart!” and maybe more “while I was under the hood, I swapped out your plugs and changed the wiper fluid”.

The plan was that I would wake up slowly, and by the time I was actually conscious, the tube would be removed from my throat and I would miss the part that everyone says is the worst.

Yeah, not so much.

When I came to at about 1:30 in the morning, it was all at once, so dramatically that I scared the nurse and started choking. She was so flustered that she began shouting at me, trying to tell me that everything was fine and I needed to breathe normally. I slowed my panic, and for what I can say with certainty was the worst forty-five minutes of my life, I desperately tried to keep breathing and not allow this horrible alarm to go off again. The alarm signaled that I was fucking up the simple act of breathing, which was not what medical professionals categorize as “encouraging”.

Finally, they removed the tube, which was exactly as horrible and discombobulating as I’d been told it would be. I lay there breathing on my own, aware that I was in a body that felt like someone else’s and apparently had a large invisible cow sitting on its shotgun-ventilated chest. The nurse asked me to say my name. I tried to say “Rob” but nothing beyond a whisper escape my lips. She gave me the teeniest of tiny sips of water from a straw.

“Can you say something?” asked the nurse kindly, her hand touching my face. I turned very slightly and looked at her.

“Motherfucker,” I croaked.

---

So when you imagine recovering from heart surgery, you might imagine being in a hospital bed for a week or two. You would be mistaken! As soon as the morning shift really got going, I was moved from my bed to a big comfy recliner and never really went back. (Indeed, three weeks later, I still haven’t spent more than five or ten minutes in a bed. Lying down is still a little... ouchy.)

And it was only a little later that same morning when an occupational therapist, who was the nicest, sweetest, gentlest Nazi dominatrix torturer I’ve ever met, got me out of that chair and had me drag my poor, broken body for a grand total of 200 feet around the floor of the hospital. A couple of times a day we repeated this, only once with a walker and always a little further than before.

At first, it was ridiculously pathetic. I had zero stamina, very little breath capacity, shaky balance and a giant hole in my body that hadn’t been there before. The first time I was out, a gentleman who must have been well into his eighties breezed past me with his OT, cheerfully encouraging me as he whisked by. I was too tired and unsteady with my walker to give him the finger, which is probably for the best.

I went in on a Thursday, and was released on Monday. They give you the little wheelchair ride to the car when you’re released from the hospital, and while I know it’s a liability thing, I always imagine it as a ceremonial rite of passage. But this time, it was entirely necessary. As I wearily got into the car, carrying the heart pillow the hospital had given me and the fun little stuffed heart that I’d given Schuyler but which she’d almost immediately loaned right back to me, I felt entirely ill-equipped to face the world outside the hospital.

And then we drove away. Just like that.

---

I’d tell you about the past three weeks at home, except that pretty much describes it. I can tell you that the view from my own recliner doesn’t change much. I can attest to the fact that Wayne Brady and Drew Carrey are both excellent hosts of Let’s Make a Deal and The Price is Right, and that I never get tired of singing along with the tuba/trombone combo when someone fails to win their prize. If you’ve ever looked at those motorized carts at the grocery store and wondered if they are as much fun to drive as they look, I’m here to tell you that yeah, they kind of are.

And if you have Frontier cable, you should know that it does the same sloth-shaming that Netflix does, where a message pops up making sure there’s still a human being watching the programming.

Don’t judge me, tv. I have a hole in me. You’re supposed to fill it.

---

So let’s talk about that hole.

I’ll just say it. It’s large. It’s large, and for some reason my incision is weirdly jagged at the ends, like they didn’t make the hole big enough and had to open it up some more. The idea that this hole might have been insufficient for whatever they were doing is astounding to me. It’s roughly the size I would imagine you’d require to install a microwave.

I want to talk about my body, because it’s the thing that’s in the air but I think most people don’t want to talk about. Which is a pity, because I know people worry about the changes to their bodies after a big surgery like this, and we’re told that the differences will be negligible. And in a few months, that may very well be true.

But now? Three weeks out? I’m in a body that looks extreme. I get out of the shower and I see it in the mirror, and the sight never fails to catch me up just a little.

My skin is pale, almost alarmingly so, and I have no upper body strength or muscle structure at all. At the same time, I still have a little of the weight I gained from surgery, although most of that was fluid and it’s pretty much gone now. (Fun fact: they give you so much in the way of fluids that you actually gain weight, and kind of a lot, in the hospital. Insult to injury right there.) So I look like a skinny, almost emaciated fat guy. That is, as you might imagine, disconcerting.

And I have holes. In addition to the giant vertical incision, which looks as nasty as you imagine, there are holes from where drainage tubes were inserted during the surgery. They don’t appear to be in any hurry to go away. I have random smaller holes from various ports and IVs and such. Some I have no idea where they’re from, honestly. And my right leg has an ugly incision from where they took a vein for my shitty, shitty heart. Additionally, much of that same leg is purple, and I mean seriously purple. Like, Grimace purple.

I look like a shark attack victim, perhaps one that washed up on the beach a few days later.

As of today, three weeks after surgery for a condition which I never felt or was physically aware of at any time (except possible a little fatigue towards the end), I still look like a wreck. I do not look or feel like I went in sick and came out better. Not by a long shot. I feel like I got tricked.

I look like a wreck, my chest still hurts rather a lot, my breaths still feel shallow, and any time I cough or sneeze, it feels, with zero exaggeration, like I’m getting stabbed with a big serial killer knife, right in the chest. Three weeks later, I still clutch that big heart pillow to my chest when I cough and try to ignore the sensation that my chest is going to burst open and my guts are going to explode forth, like that scene from Alien.

This is, by the way, apparently a common sensation with heart surgery survivors, of whose numbers I get to count myself in a few short days.

So yeah. I’m not going to lie. This fucking sucks. And I know it beats being dead, except not entirely, not always, not at every single moment. And that’s the other thing they might not tell you ahead of time.

Being under anesthesia for that many hours carries a risk. Because it takes a while, sometimes days or even weeks, for the effects of that anesthesia to completely leave your body. And that’s FINE. Better too much than too little where that’s concerned. But with the anesthesia, and the painkillers, which are mighty, come the risk of a real deep black depression settling into your bones. Unless it was already there, in which case it gets a shiny new crown and gets to walk around like it owns the place.

It’s important to talk about this, and no one did before my surgery. I wish we had. I really wish we had.

---

One reason I wanted to do this little wrap up, even though it’s a little ahead of schedule (me not being an actual survivor yet, for example), is that I realized the other day that there had been an important (if subtle) shift in my feelings.

I didn’t feel like I was going to die, not like before.

When I say that, I don’t mean it like “Man, I was in so much pain, I felt like I was going to DIE!” I mean literally, ever since the moment I woke up and freaked out under intubation, all the way up to the present, I have felt like I’m going to die. I have felt broken, wildly so. I have felt depressed, more than I let anyone know. I feel closer to the earth. At night I am keenly aware of the sound of my own heart beating, so much so that I need to mask it with music, because I get caught up with listening to it, which honestly means listening and waiting to hear it stop.

I have felt a very real shadow hanging over me. It feels visceral, it feels inevitable, and God forgive me, it has on occasion felt frankly welcome.

And that’s the hard thing no one talks about. I have felt like I was going to die, and I have been okay with that much of the time. And neither of those are probably optimal.

Today, I feel a little less like that. I have felt less of it for two days, so I guess it’s okay to talk about it now. The thought that I could live long enough to turn 52 or to vote for the next president or see the next Star Wars movie or take Schuyler to the beach this summer or go back to work or do anything in even the very near future has been simply unthinkable to me.

The future has been a closed door for me for three weeks. Today it feels like maybe that’s not true, and while it’s a subtle and perhaps temporary change, it’s enough for now. It’s not necessarily light, but it’s not darkness, either.

---

As I sit writing this, my tv is tuned to a channel that just plays classical music all day. I love this channel; much of the time it’s playing stuff I’ve never heard before. But tonight, they’ve opted for one of my favorites, Beethoven’s 9th Symphony. Such a cliche, I know, but whatever. It’s overplayed because it’s great, maybe the greatest work of musical art ever composed.

It’s full of pathos and anger and tenderness, of the joy of living and the specter of death. It’s hopeful, almost ridiculously so, but it’s not an unearned joy. Beethoven makes you work to get there. You might not make it through the first three movements. A lot of listeners don’t. But if you do, if you stick around for that unashamedly joyous chorus, you will be forever changed.

I will confess without shame, I stopped writing to sob when the Ode to Joy burst forth. I haven’t cried since the surgery, except for involuntary tears while I was intubated, so I guess I was due.

---

And tomorrow, it all begins again. I have a rehearsal for the brass band in which I play trombone and ophicleide, and it will be my first time back to music in three weeks, aside from playing a little just to make sure I still could. Another week at home and then hopefully I will be cleared to return to work. The glue and stitches from my horrible wound are beginning to fall off on their own, and they are revealing a scar that is perhaps a little less severe than I feared.

And so whatever is next is next. I’ll take this for what it is, for as long as it gives me with the little girl I love and the universe I both resent and marvel at, Melville’s grand rough world that I’m not quite finished with. Unless it turns out I am, in which case, I think I’m okay with that, too. I tried my best to make a difference, and I’ll keep doing so if given the opportunity.

“You millions, I embrace you. This kiss is for all the world.”

Just One of Those Things

Last week I had a heart catheter procedure, to measure the amount of blockage in my shitty, shitty heart and possible put in a stent or two. Put them in, send me home, back to work in a day or two, right?

That’s not what ultimately happened. No, I’m going to have open heart bypass surgery. Well. I didn’t see that coming.

Tomorrow afternoon, I meet my heart surgeon, hopefully to get this thing scheduled. I’ll meet the man who will literally have my life in my hands. So, you know, big day.

I’ll admit it, I’ve been in a weird, unpleasant emotional place ever since I found out where this whole thing is heading. I’ve been thinking about the future but also trying to shake this sense of dread, this sense that the future might not be a thing for me. Like maybe I prematurely celebrated outliving my father, who has become a very unquiet ghost indeed. I want to believe in that future, more than anything. And I know this procedure has like a 95% survival rate, but as one person recently pointed out, someone’s got to be in that five percent.

 I’ve had this guy sitting on my desk in my office for months; he’s probably my favorite monster. Warner Bros. calls him Gossamer, but once Schuyler pointed out that he looked like an angry heart, he became my representative Shitty Heart Monster. My feelings about him are also complicated; he’s trying to hurt me, but I obviously have high hopes for him and his future, which is my future, too.

I’m giving him to Schuyler when I go in for my surgery, and she’ll take care of him until I come out. It’ll be easy, I keep telling myself. A trip to the moon on gossamer wings, as Cole Porter said.

 We shall see.

Matters of the Heart

So I guess I’m going to talk about this thing, which has nothing to do with disability advocacy or Schuyler, except of course it does, because those are the parts of my life that I couldn’t separate from the rest even if I wanted to, and I very much don’t.

Last March, as you might remember, I had a hospital scare that ended in me getting my own health regimen back on track. That day sucked, to be sure, and it was followed by plenty more that were also pretty awful. But it ended up for the best, I suppose. I got better and my health improved to a point where it was more solid than it’s been in years. I ended up traveling with Schuyler to extraordinary places and had equally extraordinary experiences. And to stay on top of my health, I’ve been going to the doctor regularly, because that’s what normal people do, I guess. So I hear.

Things were going well, right up until early October when my doctor detected a faint heart murmur that wasn’t there before. He wasn’t overly concerned, so I took his lead and decided not to be all that concerned, either. He referred me to a cardiologist, just to be thorough, and a few weeks later, me and my mumbling heart took a stress test. When no red lights or alarms went off and no one called me back for a few days, I assumed I got an A. Which was cool; I didn’t even study.

About a week later, my cardiologist called me out of the blue, late one evening. According to my test results, at some point in the past few months, I apparently suffered a heart attack.

A heart attack. 

As they say in the movies, I didn’t feel a thing.

I never felt any crushing chest pain or shooting agony in my arm or cold sweats or barfing or any of that. I didn’t fall to my knees, one hand clutching at my chest, the other reaching to the sky. If I noticed anything at all, I certainly don’t remember it. Maybe I thought I had gas. Perhaps I just farted and went on with my life, unaware that my shitty, shitty heart just said, “Fuck you, Rob” and silently tried to murder me.

It failed, of course. I am STRONG like BOOL.

So. This is my new reality. I am a guy who survived a heart attack and didn’t even know it. I mean, that’s worth a few badass points, right? Just a couple? I don’t know a lot yet. I have an echocardiogram in a few days, and a heart cath procedure in January, which seems like a long time to leave me at the mercy of my murderous heart, but I’m also taking that as a sign that my cardiologist doesn’t think I’m in mortal peril. So I’ve got that going for me, which is nice.

I honestly don’t know how to feel about this. On one hand, I feel absolutely fine. Or I did. Naturally, now that I know, every single little pain or twitch sets off alarms. Tightness in my chest? Doesn’t matter if I was reaching into the back seat of my car to get something. Clearly, it’s the Big One. Random aches and pains? It’s the baby Jesus taking me home. Today I felt vaguely unwell, so I once again looked up the symptoms of a silent heart attack. (Apparently mine was of this polite variety.) Just so you know, those symptoms are pretty much identical with “stuff that happens to you when you are older than forty”. I read the list and thought “wow, I’ve been having this heart attack for ten years. Wicked.”

But behind all my joking (which apparently amuses no one except me, but whatever; if I keel over dead tomorrow, I’d like my final post on social media to be both entertaining and creepily prescient), there’s an undeniable truth. I’m pretty sure I already knew this, but as it turns out, I’m mortal.

For parents of people with disabilities, that mortality feels like it comes with a heavy price. It caries fear, not just of death but of the chaos it leaves behind. That brooding fear is inevitably accompanied by guilt for abandoning someone who needs me and will likely always need me, even after she no longer has me.

And that weighs on me.

Schuyler and I have been talking about this, because I don’t believe in hiding the hard stuff from her, not one bit. She sees through my dumb jokes and cavalier attitude. She knows what could happen, and she knows she’s not ready for that world. She might actually be wrong about that, which is a thought that eases my worry a little.

But we’re not ready to be done with each other. We have adventures left to embark upon. We need more time, we have beautiful, risky ventures awaiting us. I’m not ready for that to be done.

A few days after getting that fun phone call, Schuyler and I grabbed my tiny euphonium and drove a couple of hours away to join a bunch of other low brass musicians in playing Tuba Christmas in Wichita Falls. The next day we did it again here in our own town, and we’re going to hit two more next week, including Christmas Eve in Dallas. I’m still in love with being a big dumb nerd and playing my horn with other big dumb nerds. I still want to get a tuba before I die. (I even found a used one super cheap that I love, if anyone feels like throwing their money away to grant the dying wish of a feeble old man trying desperately not to go into the light, coff coff…) I actually got paid the other day for playing the ophicleide in public for people who weren’t even being held against their will, which isn’t nothing. I’ve got shit to do.

And I have a remarkable young lady to do those things with, and more. I have someone I need to walk down the aisle one day. I have unborn grandchildren to meet. I have glorious risks to take and a rowdy, rough life to live. I’m not loving being faced with the tangible suggestion that I could run out of time far earlier than I’d planned. My father died from a crap heart at fifty-one, the same age I am now. I’m not a big fan of repeating history.

If I am out of time, perhaps this is how I’d like to be remembered, in a photo taken last weekend by Schuyler, my biggest fan and the engine that runs my faulty but doggedly determined old heart. Just a dork with a really dumb hat and a tiny euphonium. I could do much worse.

Lily Pads

Okay, so let’s get this out of the way first. I was wrong. I was very, very wrong.

A few years ago, I wrote a blog piece about something I saw online, a photo of a group of speech language professionals seated around a table, communicating with each other using AAC devices. To my reactionary eye, the photo was troubling. It felt like just one more exercise for able-bodied people to “get” what it must be like to have a speech disorder like Schuyler’s. It looked bad to me in part because I was seeing it linked on the Facebook page of an AAC company, which felt unseemly to me. Worse to my eyes was the fact that they seemed to be having a lot of fun. My indignation raced out ahead of my brain.

I posted a blog entry with my observations about what I perceived to be an ill-conceived stunt, and it lasted maybe half an hour online before my editor contacted me. She was getting pushback from the therapists in the photo, she said, and while she was willing to leave the post up, she wanted to give me the opportunity to choose its ultimate fate. I did what I should have done before tapping out a single word; I reconsidered my snotty position. And then I removed the post.

Last week, Schuyler and I joined those same speech professionals, including Lindsey Paden, original developer of what came to be known as the Chatterbox Challenge, and we participated in an identical session.

And it was fantastic.

Turns out the Chatterbox Challenge, which you can read more about here, isn’t about sympathy, and it’s not about being inspired or showing off the technology to the world or raising awareness or anything else like that. The object of this immersive language exercise is simply to promote familiarity with the language system and the strengths and inherent challenges involved in communication with AAC. The goal is nothing more or less than to become better at prompting and modeling AAC systems to our kids and our clients. (None of this was a secret back when I wrote my ill-advised blog post, of course.)

As a participant, I learned a great deal. I saw how in order to keep up with the flow of conversation, quick steps and approximations were often necessary, (Someone asked me how our trip from Texas had been, and I ended up answering “We had a good flying,”, because those were the words at my fingertips and it told the story just fine.) I understood in a more visceral way how the delay in producing conversation via AAC can silence a user, and how increasing the speed of speech production was vital, much more so than accuracy. We learned stuff, and God forgive me, we even had a little fun, too.

So there you have it. I was wrong all those years ago, and to anyone who read that original post or who felt criticized by it at the time, I am officially apologizing, both for being so wrong about you, and for being kind of a dick about it.

Glad we got that out of the way. Moving on.

Bridgeway Academy's Samantha Lyle, Lindsey Paden and some hobo who wandered in.

---

In looking back over the past few months, or even really the last year or so, it feels like we’ve been in this truly transformative period, in Schuyler’s life and also in my own. High school graduation, the PMG conference, Australia, and then her internship, all of these things have rolled out for her like a production line of change. Schuyler has never been much for routine, but still. It’s been a lot, and it has left her feeling a little swept off her feet. Not in a bad way, but still.

After the ISAAC conference in Australia, we were invited by Lindsey to come to her workplace, Bridgeway Academy in Ohio where she serves as Director of Therapy Services, in order to share our story and our observations with that community. For Schuyler, and for me as well, this also presented the opportunity to get to know people who were already becoming important in our lives. When we left, it was with our scope of family greatly expanded. That’s not a small thing, not for either of us.

Bridgeway Academy’s stated mission is to inspire the potential and celebrate the ability of every child. That sounds lofty, but when we visited, we got to watch how that works up close. It really is extraordinary to see talented, compassionate people in their element, and to watch the results of that good work bloom in front of you. By the time we presented last Thursday, I wanted very much to impress these people. I hope we managed to do that, maybe just a little.

As for Schuyler, she represented herself with poise and style, and once again I couldn’t be more proud of her. She’s becoming a good self-advocate, and she’s getting a better idea of what she wants that to look like in the future. Not just for herself, really, but for those like herself “with little monsters of their own,” as she said in her presentation. I could see her working someplace like Bridgeway one day. I can imagine that very easily.

“As a writer, I hate to admit this,” I said in my speech last week, “but our biggest moments usually defy description. The relationships and experiences we make in the course of our lives define the paths we take into the future.

“We’re all just little frogs trying to cross the swamp,” I continued, “and there are alligators and snakes waiting to gobble us up, to be sure. But there are also lily pads. We search for the ones that will support and sustain us, and that’s how we find our way.”

In recent months, we’ve found some crucial lily pads, and our lives have been enriched beyond measure as a result.

Uncharted: An Exploration of AAC, Advocacy and Agency

October 11, 2018
6:00pm
Uncharted: An Exploration of AAC, Advocacy and Agency
Featured speaker, with Schuyler Hudson
Bridgeway Academy
2500 Medary Ave, Columbus, Ohio 43202

Please RSVP to Janelle Maur at jmaur@bridgewayohio.org to let us know if you will be attending. $5/person and $20 per family maximum. CASH ONLY at the the door. 

Bridgeway Academy welcomes Robert Rummel-Hudson and his 18-year-old daughter Schuyler for a presentation and discussion about advocacy and agency for users of AAC (Augmentative and Alternative Communication).

Robert Rummel-Hudson is an author and advocate based in Plano, Texas.

His 2008 memoir, Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin’s Press), tells the story of raising a little girl with a disability and learning to become the father she needs.

Robert is joined by his daughter Schuyler, a recent high school graduate who uses AAC and participates in Project SEARCH, an employment internship with Baylor Scott & White Hospital in Plano, Texas. In July, she participated in a leadership workshop for AAC users at the ISAAC Conference in Australia. 

For the past several years, Schuyler has joined her father in his presentations, giving her own perspective as a young adult with a disability discovering her own path to agency and independence. Together they examine Schuyler’s journey through public school, implementation of her AAC technology, finding their authentic family, and the larger issues surrounding employment opportunity, social integration and building a truly inclusive society.

https://us.macmillan.com/books/9780312538804

The Few Things

There’s a lot I could tell you about Schuyler’s trip to Gold Coast, Australia for the 2018 International Society for Augmentative and Alternative Communication (ISAAC) Conference, where she took part in the Dare to LEAD workshop for selected participants who use AAC technology to communicate. There are a great many stories to tell about our trip.

I could tell you about the sense of adventure that accompanied a trip to the other side of the planet, or about Schuyler’s joy in discovering all the differences both tiny and significant between the US and Australia.

I could tell you all about how she finally got to meet my friend Lindsey Paden, and how in an instant, Schuyler didn’t just have a new friend, but family. I could tell you all about how Lindsey sketched Schuyler’s mantra “No more hiding” in lovely script on her arm, and copied a symbolic speech bubble onto my finger, and how the next afternoon, we celebrated Schuyler’s workshop by having both these sketches made permanent by a very cool Maori tattoo artist.

I could describe the conference sessions we attended and the talented professionals we met.  I could tell you my own feelings of renewed advocacy and my own continued commitment, already fired up, to helping build an inclusive, meaningful and authentic advocacy movement.

I could even tell you about Schuyler’s first legal drink (18 in Australia).

There’s a lot I could tell you about our week in Australia. But there’s one thing I can’t tell you very much about at all.

I can’t tell you about Schuyler’s leadership workshop itself. I wasn’t there.

It wasn’t for me. I didn’t have a place at that table, one where AAC users were discussing ways in which to advocate for themselves in the world. And Schuyler, my darling little baby girl who has inconceivably transformed into a young adult, didn’t need me there. She was able to handle herself entirely, and contribute and participate, without my help. I watched her improvise her way through an introductory speech she didn’t realize she needed to give, and then they broke for lunch. And I was gently shooed away.

Which is absolutely how it should be.

Schuyler’s advocacy has been growing over the past few years, although in a sense I suppose it would be impossible to really mark its beginning. She’s always been the most qualified person to tell her story. But this trip changed things for her. Suddenly it wasn’t me pushing her gently from the nest. There were other hands waiting to catch her when she took flight. A week after finding her Polymicrogyria family, she found her larger community, too.

She was ready.

So of all the stories about this past week I could tell, I think I’ll simply leave you with this. We went to the other side of the world and had a transformative experience. And I had that experience not with a child, not with the little girl who has inspired so much worry and so much wonder, but rather with a confident young adult. And that is not a small thing. In a week full of the great things in my life, that fact most of all was extraordinary.

I’ll tell one last story with a photo.

Community of Souls

“I thought I was the only one.”

It was a surprising thing to hear from Schuyler. It never occurred to me to think that she really believed she was all alone with her Polymicrogyria, and on an intellectual level, I know she understood that she wasn’t literally the only person in the world with it. But it wasn’t hard to understand why she would feel that way, or why she now understood just how very untrue that feeling was.

She quietly made that statement to me as we sat at the Polymicrogyria Family Conference in Denver last weekend, listening to the keynote address by Australian writer, speaker and life coach Natalie Roberts-Mazzeo. Natalie has been writing about her daughter Chiara online for a number of years at Chiara’s Journey and Miracle Mama, and her keynote address to the conference was powerful and deeply moving. More to the point for Schuyler, however, her story of her five year-old daughter with PMG felt very, very familiar.

All the stories we heard felt familiar. And it was in that familiarity that the real value of the conference could be found.

I’ve written about PMG a great deal over the years, so I won’t go into it too much here. It’s not as rare as we believed it was back when Schuyler was diagnosed in 2003, when her doctors found fewer than a hundred confirmed cases, but it’s still rare enough that we are unlikely to even meet professionals who know about the disorder, much less another person with PMG, unless it’s at an event like this one. Schuyler’s sense of uniqueness and perhaps even isolation has grown out of having friends with their own disabilities like CP or autism that come with a community. It’s hard to be different; it’s more challenging to be different even among the different.

But this weekend, almost two hundred Polymicrogyria family members converged on Denver, including about thirty young people with PMG. And just like that, Schuyler was among her people in a way that she’d never experienced before. She was the oldest with PMG, if I’m not mistaken, and honestly, the one with the most subtle impairments. I think she noticed that. I watched her empathetic nature bloom as she played hard with the younger PMG kids. They adored her, and she loved them right back. She was everyone’s big sister, in a way that was a little bittersweet.

It was bittersweet because we always thought Schuyler would be a fantastic big sister. When we were warned that there was likely a 1-in-4 chance that another child would have PMG and that it would almost certainly manifest itself less gently if it recurred, however, we made a hard choice not to have any more kids, and we never discussed it again. That was thirteen years ago. And that was that, until the doctor who diagnosed her casually mentioned during his video presentation on the ongoing research into PMG that for kids whose PMG manifests itself like Schuyler’s, the cause isn’t genetic.

That was hard to hear. That’s all I think I want to say about that.

We gave our presentation on the last day of the conference, and while I think my part went pretty well (aside from a Marco Rubio-style dry throat moment), it was Schuyler’s presentation that landed with particular impact. It’s not hard to understand why. The word “inspiration” is problematic at best in the disability community, and I try to use it sparingly. But when families and people with PMG looked up and saw a formerly non-verbal kid like theirs sharing her experiences and her thoughts and dreams using speech technology, and when they met her and saw how well she communicates now and the promise of her future, I think they were reminded of possibilities that have been perhaps hard to believe in.

We’re not the only ones who have felt isolated and alone with Polymicrogyria. We’ve all sort of marinated in the dire predictions and the dark prognoses that come with a PMG diagnosis. We’re not the only ones who had this mouthful of syllables attached to our children and then sent out into a world that wasn’t prepared for them or for our questions and fears. There’s no promise inherent in Schuyler’s manifestation of PMG, no suggestion that her fate is going to be anyone else’s. But it’s important to remember that all the dark predictions that most PMG parents seem to get upon diagnosis were the same ones we received all those years ago. Schuyler doesn’t represent the future to anyone, but perhaps she suggests possibilities, and that’s not a small thing.

I’ve presented at many conferences and gatherings over the past decade, and they’ve all changed me, made me a smarter and more empathetic person. I’ve been profoundly fortunate to have these opportunities. But this was special. This was family. I met devoted parents, including a bunch of extraordinary fathers, and I was privileged to meet their beautiful kids. And it is my most sincere hope that the growth and the community that we all felt for one summer weekend in Denver won’t dissipate as we return to our lives, the ones we all lived before but which now seem transformed.

There’s work to do. I have no doubt at all that these families, this one newly minted large family, will get that work done.

The Folly of Fortune-Telling

In the spring of 2005, Schuyler was evaluated by the diagnosticians and special educators at her school in Manor, Texas, near Austin. They concluded that her fine motor issues would most likely preclude her ever being able to write by hand, and while the extent of her developmental disability was still undefined, it was unlikely that she would ever be able to read or write in any meaningful way.

Additionally, they saw no indication that Schuyler would ever be able to utilize a high-end dynamic voice output device. Such a device was deemed “not educationally necessary”.

In the summer of 2018, Schuyler and I will give a presentation on her journey and her future with PMG, as featured speakers at the Polymicrogyria Family Convention in Denver. The following week, we will travel to the ISAAC conference in Gold Coast, Australia, where she will participate in a leadership workshop with other adult AAC users. In the fall, she will begin an internship at Baylor Scott and White hospital, in a program designed to give young people with disabilities the opportunity for real-world job training and eventual placement.

Before all that, however, this happened:

And if you sent her a gift for her graduation, the thank you note you’ll be receiving this week will be composed and handwritten by Schuyler. Those notes might not be pretty, but they will be authentically hers.

All of Schuyler’s successes belong to her.

The point of all this isn’t that we were right and her earliest evaluators were woefully, dangerously wrong. Although let me be clear: that’s definitely true. The reality is that I’ve gotten plenty wrong about Schuyler. I’ve failed her along the way with remarkably regularity; I’ve probably failed her this week on multiple occasions. I’m not a great dad except in that I mean well, I love her unconditionally, and much like Chumbawamba, I get back up again. If I were to identify my best attribute as a father, that’s probably it. My ability to say “Well, shit, that didn’t work. What else can we do?”

My point, not just for me or Schuyler or even for you but for every educator and every employer and policy maker and citizen, is that the only way the world will work for people with disabilities like Schuyler is if it becomes a place defined by opportunity. Inclusion can’t be a policy or a goal; the time for that is long behind us now. Meaningful inclusion has to reside in our DNA as a society. The idea that we should identify disabled children’s limitations and predict future outcomes based on what we see or think we see was never a good model. It’s an unforgivable one now.

As for Schuyler, I’m left with a torrent of emotions. Chief among them is pride, the kind of unbounded pride that bursts from the cage of trepidatious pragmatism that I’ve constructed over the years. My pride in Schuyler’s achievement runs free now. It sprints toward the future now, a future that is still unknown but which belongs not to poor prognosis or flawed predictions or prejudices and low expectations.

The future belongs to Schuyler and her friends. We need only create a just and inclusive society with opportunities and authentic relationships and real equity. And then get the hell out of their way.

Congratulations, Schuyler, you beautiful epic explorer. What’s next belongs to you.

No More Hiding

Schuyler’s time in high school is quickly drawing to a close, faster than either of us are emotionally prepared for. As part of that transition, her percussion studio at Plano Senior had their end-of-the-year pool party yesterday, an annual event that concludes with awards, remembrances of the graduating seniors by her percussion director and a round-the-room sharing and appreciation by all the students in the class.

The final award given is a kind of spirit award, but more than that. It’s named after a former student, one who brought so much enthusiasm and positivity to the band and had such a deep effect on the people around him that the award was created specifically with him in mind. He wasn’t disabled, not that I know of. He just set a bar for bringing a kind of leadership through attitude and personal relationships. He possessed a light, we were told, and a kind of gravity that pulled in the people around him, and the award looked to recognize that quality in others. It’s an interesting award in that the criteria is based on intangibles. It’s one that has a great deal of meaning to the director and to the students.

And this year, the award went to Schuyler.

It was a bit of a surprise, I’ll own that. I worry so much about Schuyler finding acceptance and being understood by the people around her, not just her communication but her overall “Schuylerness”, and out of my fear for her quality of life, I occasionally (and shamefully) forget to make room for the idea that she’s giving something to the world around her. Being surprised by Schuyler’s success is never a reaction that makes me feel like a swell father.

And yet, as her director described the award and the young man for whom it was named and founded, I found myself thinking that in a just world, in a fair and inclusive society, Schuyler could win an award like that. Hearing her name announced did something to me, something weird and hopeful and a little bit guilty for believing that in THIS world, in MY world, Schuyler wouldn’t win, couldn’t break through the barriers that have dogged her and her friends all along. When Schuyler won that award, it spoke to possibilities.

In his comments about Schuyler, her director spoke about her early days in band, and was frank about how so many people at the time simply didn’t get Schuyler. I remember those days. When she got to middle school, something changed for Schuyler. She didn’t charm everyone like she did in elementary school. She confused many of her teachers and frustrated a few. But her band director got her entirely, and that band director was married to the percussion director at Plano Senior. He knew Schuyler already, and he got her. He was one of the primary reasons we elected to send Schuyler to Plano Senior. He and his wife get Schuyler as much as anyone in her life, as much as any family member. They will be profoundly missed when she graduates.

Schuyler’s fellow students spoke about her positivity and how much joy she brought to their lives. One young man spoke about how happy he was to see that he had been assigned to Schuyler’s concert band because she was so much fun to make music with. Another told her how when he saw her at Homecoming, he was taken by how much natural beauty she possessed, and how so much of that came from the person she is at her core. The one thing that none of her fellow percussionists said about Schuyler was that she was an inspiration. The thing that no one did was condescend to her.

That was a big deal. That was a really big deal. I've been writing and speaking about the value of authentic relationships with people with disabilities, about how I believe that's the key to successful disability advocacy and a truly inclusive society. I don't think I give a half-terrible presentation on the topic, either. But Schuyler is my best argument. At times, she's the living embodiment of what I'm trying to describe. She lives and breathes it. Schuyler illustrates the value of getting to truly understand people who are profoundly different and looking past their disability to appreciate the whole human. Not to pretend that disability isn't there or doesn't matter, but rather to put it in a larger, more nuanced context. The kids who have been in band with Schuyler, particularly her fellow percussionists, they started out meeting a girl with a disability, and perhaps a daunting one at the time. But to the best of them, that didn't define her for long.

In a few short weeks, Schuyler will leave the protective environment of school and the community that has come to really know and understand her. That concerns me, of course, because until she got to Plano Senior, Schuyler was dedicated on a fundamental level to passing. If you don’t know that term, in the disability world “passing” refers to the practice among people with more invisible disabilities to pass as neurotypical, to hide their disability and walk through the world with their differences unrecognized.

It’s controversial, the concept of passing, and for good reason. For one thing, at least for Schuyler, it was doomed to fail. Even if she succeeded for 95% of the time (and that would frankly be a high percentage), that last 5% is where it would fall apart, like a commercial plane flight that was 95% successful in taking off and landing safely. Passing for Schuyler meant delaying the inevitable, and it perhaps sent a message that there’s something shameful about her disability, and that she sees herself as less. In a society that struggles to treat people like Schuyler as fully realized human beings, that’s a dangerous path to go down.

When I say dangerous, I mean that literally. My dear friend and speech language mentor Lindsey Paden Cargill recently tweeted the disturbing results of a study showing that passing (or social camouflaging) is the best predictor of suicidality among autistic people. Think of that for a moment. Trying to mask their differences and pass for typical is literally costing neurodiverse people their lives.

Schuyler isn’t autistic, and I realize that there’s only so much that can legitimately be applied to her from that study. But I believe that the more Schuyler attempts to present herself as something she’s not, the more damage she takes on herself. She’s not less. She’s different, and she requires some patience and some accommodation in order to move successfully through the world. But when she’s truly understood and truly known for herself, she takes flight.

I think she’s beginning to get that. Maybe it began when she found her tribe in band at Plano Senior last year. It was certainly strengthened when she began to advocate for herself in the presentations we’ve given over the past few years. Perhaps it’s simply part of her growing up and finding her place in the world, an elusive groove that is only now presenting itself to her. All I know for sure is that she’s excited about this summer, presenting in Denver and in Australia, being surrounded not just by people like her but also by people who aren’t but whom she could maybe reach and find a new understanding.

Recently Schuyler got a new speaker to boost the inadequate sound produced by her iPad. When it arrived, I confess it was larger than we expected. She was looking for something she could attach on a lanyard, but this speaker was a little too large for that. It was also much louder than any speaker she’d used before. Louder, and deeper, more present.

The first time she used it to order at a restaurant, she jumped when her electronic British voice spoke. But the reaction she got was entirely positive, and since then, she’s been using it at full volume most of the time. She’s less afraid of being noticed and more enamored of being actually heard and understood. Finding more success at communicating is apparently worth the risk of being looked at and having her difference recognized.

When I asked her how she liked her big, loud speaker, Schuyler told me that she has a new motto. “No more hiding,” she said.

She may backslide from that from time to time; I can’t imagine she’s done with people who don’t understand what she’s all about and who have no patience or empathetic inclination to try. But yesterday, as she learned just how highly she is regarded among her peers, Schuyler saw with fresh eyes just how much she has to gain from being who she is, without pretense.

I’m looking forward to seeing more of her embracing her authentic self. The world is going to be a better place with that particular Schuyler in it.

The Care and Feeding of Monsters

I recently had the surreal but entirely positive experience of revisiting my book on the occasion of its release, ten years after publication, in audiobook form. I began listening as a kind of quality check, bracing myself for the voice actor to introduce “Shooler’s Monster”. (He didn’t; he was actually a fantastic actor, and I couldn’t be more pleased that he was the one who got to spend nine hours in a recording booth instead of me. We were all spared my stuttering, monotone twang. You’re welcome.) I began listening to the first chapter, and then, like a drunk who blacks out and then wakes up the next day pantsless in the park, suddenly I found I’d listened to the whole thing.

I stayed for the entire book, not because it is such a brilliant work of wordsmithery, but rather because I hadn’t actually read the whole thing from beginning to end in, well, probably ten years. Once I stepped into the prologue, back in New Haven with baby Schuyler and that beautiful, horrible afternoon in a late New England summer, all my half-forgotten anxieties and heartbreaks and WTF moments became real to me all over again.

I found myself back in the summer of 2003, when my baby girl was an internally focused and entirely wordless enigma, and the future consisted of a rolling mist, opaque but presumedly fully of hungry, hateful monsters. Schuyler was imperiled by that future, and I was too dumb and too scared to do anyway thing more than step into it with her. 2003 was the summer of “Well, shit, here goes nothing.”

Monsters. Their nature has changed over the years, although they are as omnipresent as ever. I have a small confession to make about the title of my book. Some people hated it, and others found it to be an elegant metaphor, but either way, it wasn’t my brilliant idea, not directly. I’d been referring to “Schuyler’s monster” on my blog for some time before the book was written, but the term itself originally came from Schuyler.

I’ve said many times that the only two things I know for sure I’ll always give Schuyler are love and the truth, and that was true from the very beginning. After her diagnosis, she knew something was wrong, she understood that something big had changed. When I tried to explain it to her on a level that would make some sense to her (as if it made any to me, then or now), her eyes lit up, and she asked a question, with her combination of primitive sign language, even more primitive verbal language, and her omnipresent miming as if her life was an unending game of charades,

Was it a tiny little monster living in her head?

And I thought, You know what? It kind of is. Let’s go with that.

At the time immediately after Schuyler’s diagnosis, in my state of numbed panic and heartbreak, the idea of what a little monster inside her beautiful but inscrutable brain might be doing to her was simple. It was hurting her. It was trampling her future and making its plans to whip up lightning storms inside her sweet little head. It might have even been preparing to extinguish her life altogether. No one knew, and because I’m her father and thus needed to be prepared, I believed the worst case scenarios and stood by, ready to do what I could to protect her from that monster and those storms. I was aware then as I am now, of course, that what I could do to save her was not a goddamn thing.

It’s been almost fifteen years since that awful summer, the one that broke me but not Schuyler. The life she lives now is not the one we were warned to prepare ourselves for. Her brain was badly malformed, maybe as much as three quarters of it affected by her polymicrogyria, but it nevertheless reformed its lines and rewired its functions and is doing its brainly job with style and ingenuity. She had feeding difficulties, but aside from maybe half a dozen terrifying choking incidents, she’s navigated the world of food with gusto, and most of those feeding issues have completely faded. She has intellectual disabilities, but she’s not a fool. She experiences and processes the world around her in her own way, but that way isn't childish or insufficient.

It’s weird and wonderful and cool, Schuyler’s brain world. And she’s right. It has a monster in it.

This monster isn't the one I feared when she was so much younger. It’s not a monster that Schuyler hates, I don’t think, not really. Her polymicrogyria, and the unique life it gives her, is hard, and it lacks navigation or instructions. But after all these years of keeping on keeping on, of finding what works and what she wants to do with the complicated and compromised life she’s been given, Schuyler lives that life always aware of her challenges but not fixated on them. At the impossible age of eighteen, she’s doing her very best, and her very best isn’t bad at all. As a matter of fact, Schuyler’s best is pretty extraordinary.

And there’s a monster there still. She seems less and less motivated to hide it than she was even a year ago, which I believe is a very positive development. She seems less interested in trying to pass for neurotypical than she was even a year ago. Perhaps she’s experienced the world of the neurotypical for long enough to know that we’re not so perfect, or more to the point so undamaged, as she might have once believed. The reality of the world has made a strong case for alternative possibilities she might not have entertained before now.

The typical world is kind of screwed up, in other words. Her atypical life might not be all that lacking after all.

If you’re not a part of the disability community, and by that I mean if you don’t have a disability yourself, or have immediate family members or professional clients with a disability, you might imagine our lives as being an ongoing season of The Disability Show all the time. And I guess on some level that’s true, in that it never goes away. There’s always a monster-shaped chair in every room, and it’s never unoccupied.

Our reality is more subtle than that, however. We don’t talk about it every day, or even most days. The older Schuyler gets, the less she worries about it. And for all that I write about Schuyler’s polymicrogyria and trying to make sense of it, I don’t think of Schuyler as the disabled kid all the time. I’m not always Disability Dad. Sometimes I’m Amateur Musician Dad now, for example; I’ve begun to learn a new instrument (the ophicleide, which is perhaps the ultimate hipster instrument, in that you’ve probably never heard of it). We’re all living our lives as people, and Schuyler’s disability is a significant part of that, but it doesn’t suck up all the oxygen in the room the way it once did.

It’s not that I live in denial. But the fact is, when you know Schuyler, she’s just Schuyler, polymicrogyria and weird ways and rockstar presence and big laugh and all. When you get to know her, she becomes more.

That’s important. The world in general sees someone like Schuyler as less. It sees people like her as diminished members of society, because it doesn’t see them in their totality. People with disabilities are treated like partial people by our society because our society doesn’t know them. Much of our society doesn’t even realize they are knowable. And until those relationships become real, until students in school and adults in their workplaces and tv viewers turning on their favorite shows begin to see people like Schuyler existing and working and laughing and cursing and living messy lives right next to them, there will always be a divide. There will always be an Other. And as a society, we are absolutely awful when it comes to embracing the Other.

Schuyler’s life now is a mix of the typical and the monstered. She attended her school’s Homecoming dance last fall, with a shy young man who asked her to the dance and made her world suddenly bright with possibilities. She went to prom last week with another exceptional young man, this time one whom she invited, perhaps because she’s beginning to understand that if she wants to have the world on her terms, she’s got to spell those terms out herself. This summer we’re speaking to a gathering of polymicrogria families and then traveling to Australia so she can attend a leadership workshop for adults who use assistive speech technology. And at the end of the summer, she’ll enter into an internship at a major local hospital, where she’ll spend about nine months learning valuable job skills in a variety of different positions.

After that, Schuyler will enter the adult world in earnest. She’ll step into the foggiest of fogs, and she’ll lose the protections that school and childhood have cloaked her in. Will the world be ready for her? Is it ready for any of her peers? I sometimes wonder. The speeches I’ve been giving over the past few years have contained a lot of calls to arms where disability rights and societal change and authentic relationships with people like Schuyler are concerned, but I sometimes fear that while the faces in the audience may change, they’re still mostly members of the choir that I’m preaching to.

I want to change the world, and I fear that I can’t. It’s dawning on me now that I’m not going to be the one to do it.

It’ll be Schuyler, and people like her. And they’ll do it because it needs to be done. The rest of us need to help them build a world in which they have the opportunities the rest of us enjoy in our extreme privilege. And when we step back and watch what they do with those opportunities, all I know for certain is that our only appropriate reactions will be ones of respect, and maybe even just a touch of awe.