Excerpt:
I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.
Excerpt:
Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.
Excerpt:
We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.
Excerpt:
In 2016, we're not just going to be choosing a president. We're going to be establishing a new social narrative, or at the very least engaging in a more vigorous discussion than we've had in a very long time. If we can focus on our commonalities, if we can present a voice that isn't necessarily unified (because I know better than to think that is likely to happen), but at least harmonized, this year could present a real opportunity to create a national conversation about disability rights and our broken social model, a dialogue that effectively addresses the needs of disabled persons. This could be the year that society responds to the needs of this community reasonably and empathetically, rather than with "oh, god, not these people again".
Excerpt:
It's only a few days before Christmas, and even though I'm a dirty heathen, I find myself compelled to reach out to my fellow special needs parents. I understand that it's not necessary an easy or particularly merry time for many of you. I know that in some ways, this might be the very hardest part of the year. There's not much in the world with as much power to isolate us as a seemingly constant reminder that the standard holiday narrative is not our own. Happy and understanding families, smiling untroubled kids, a world filled with peace and love and acceptance, all of these can feel far away to us. The Norman Rockwell scenario fed to us by popular media can sometimes feel like it's winking at us and saying out of the corner of its mouth, "Ah, yes, but not for you."
Excerpt:
When we can't pass and disappear into the world of the typical, the internet communities we build help us to feel as if in this smaller, more self-selecting world we've assembled, we're part of a neighborhood, and when someone is in trouble, it can sometimes seem like that family lives just down the street, and we were informed by a neighbor walking by. It is, as I said, a fiction, but it's one of the more valuable ones we have.
Excerpt:
The world isn't an easy place for kids like Schuyler, but at times like the holidays, it can perhaps be a little more straightforward. I think one reason Schuyler adores this season so much is that for at least a little while, the rules become a little more clear, and a little more fair. It doesn't matter so much if disability makes things harder, because during the season of peace, the people around her perhaps try a little harder to be kind and inclusive. The world in which she lives, one that fascinates her even as it sometimes disappoints, it makes a little more sense at this time of year. And if I'm paying attention, her straightforward love for that grand, rough world begins to make a little more sense to me, too.
Excerpt:
You don't have to be Donald Trump to take a spin on that low road, either. You can be the President of the United States or the Mayor of Chicago, and all your good works on behalf of the disability community can be tarnished by a careless moment or an entrenched vocabulary that is unable to surmount your pride or your bad habits. You can be an educator enjoying the sanctum sanctorum of the teachers' lounge as a safe place to express your frustration. You can be a teenager who might even know better but is afraid to step out of the immature culture of your peers. For that matter, you can be an author and parent advocate who only finds his better humanity very late in the game, destined to spend the rest of his life striving to do penance for years of insensitivity.
Excerpt:
Things are different now. I wouldn't describe her current academic setting as inclusive, despite our very clearly expressed desire for such an environment for her. Significantly, I feel pretty confident that if you asked Schuyler for her preference, she would pick her present situation. She's more comfortable on the Island of Misfit Toys. You can keep your Lord of the Flies island, thank you very much.
Excerpt:
Schuyler doesn't understand what's going on in any comprehensive way. I don't know how to explain ISIS or Syria or refugees, and certainly not religious extremism or American jingoism. I tried to explain the Paris tragedy to her as best as I could, but honestly, I'm not sure I understood it all that well myself. I still remember the world before it lost its mind. I don't really have the intelligence or the stomach to make sense of it to Schuyler now.
Excerpt:
It can be a little frustrating, having to explain polymicrogyria. Other disorders with a great many patients receive a great deal of public awareness, as well they should, but it can feel like the oxygen in the room is very limited as a result. People ask a lot of questions based on their observations of Schuyler. Is she deaf? Does she have autism? Sometimes I go into the whole thing; other times, I just say she has a rare brain malformation and leave it at that. Sometimes I feel like being a teacher. Sometimes I'm just tired.
Excerpt:
It's no secret that letting go of Schuyler's chaotic, sometimes troubled but always adventurous childhood has been difficult, mostly because what lies ahead is so mysterious, and where special needs parenting is concerned, mysterious is never comforting. Every time she picks up a piece of her own advocacy, Schuyler puts down just a bit more of a deposit on the future. On her future.
Excerpt:
My little girl has had a lot to overcome in her life, and a lot of antagonists to face. Much of the time, however, her most daunting foe is herself. Her insecurity, her fear, her frustration, her occasional laziness, and her misunderstanding that if she plays her cards right, the world will feel bad for her and smooth the way.
Excerpt:
Adversity builds special talents, or so we've always been told. That might be bullshit, a way to feel better about the things that hold us back beyond just "Wow, that really sucks, sorry." But it feels true enough, I guess. I'm not sure if it's a scientifically measurable phenomenon, but those of us with special needs children watch them as they work to overcome obstacles, and we hope that their other senses and capabilities step up to fill the gaps. We hope for the same within ourselves, too.
Excerpt:
What will they see in this person, your beloved little weirdo who doesn't fit in anywhere? Will they have observed the things that set our kids apart already, or will they still be trying to fit them into preconceived spaces? Will they see your kid as a burden, or a challenge, or will they see the person you see, with flaws that certainly aren't invisible but which perhaps don't manifest in obvious ways? Will these new teachers be hesitant? Enthusiastic? Will they even know where to begin?
Excerpt:
As a parent of a daughter for whom all this will depart the realm of the theoretical, I confess that the best part of this isn't the information that's available, although that's nice. For me, it's a great comfort just to hear someone else, particularly government agencies, say "Yeah, this is a big deal. Let's look at this and see what can be done."
That's not a small thing, not at all.
Excerpt:
Last night, like everyone else lucky enough to have clear skies, we watched the rare display of a supermoon and a full lunar eclipse at the same time. As far as excitement goes, it fell short of, say, a lightsaber duel or an airplane race, and yet she loved it. She theorized that if she became a werewolf, her newly dyed hair would mean that she would be a blonde werewolf. As the moon disappeared and then shifted red, she watched with amazement. This was an unexpected experience, and those aren't always a good thing for kids like Schuyler. But to her, it was another gift from the universe. If I perceive that universe as sometimes cruel and sharp, Schuyler simply recognizes it as a fount of surprise and wonder.
Excerpt:
If you're a father and you're not committed to being an active, involved, pain-in-the-ass level participant in your special needs child's advocacy, I guess you're the one I want to reach the most. It's not that you're making it harder for the rest of us, because that's small potatoes to us. I've spent the last twelve years wondering if my daughter was going to die from seizures. I've spent that same amount of time trying desperately to keep her schools on track and to lay down bridges for her so she can cross the cracks that she could so easily fall through. The lazy societal expectation that's I'm not going to give a damn or get involved in Schuyler's care? That's not a scary junkyard dog. That's a chihuahua.
Excerpt:
In the end, Hun-Joon Lee was devoured by an unsafe world. He was destroyed not by his disability, but by the monsters that we as a society have created, or at least allowed to roam free. He sat, unmissed, in a school bus on a hot day, and he paid the price for our complacence. Despite the sorrow of his family and the agonized guilt of those who failed him, and also despite the paragraphs I'm spilling out here in a failed attempt to wrap my brain around this, in the end, there's really not a goddamn thing to say.
Excerpt:
I guess for me, I'm simply looking for the place where Schuyler will be happy. I suppose I'm looking for my own happy place, too. Those two are bound together, I know. And as I've gotten older, I've come to see how complicated and elusive that might be. Now that she's a teenager, Schuyler's best bet isn't The Perfect School. And when she transitions to her adult living situation, her own level of success is going to be driven by factors depending less on the services she receives and more on the life she wants to build and the willingness of the world to make that space for her.
Excerpt:
Is it fair, taking that word away from you? Don't you have a right to use whatever word you please? Surely brave patriots gave their lives at Lexington and Bunker Hill so that King George the Third couldn't keep you from watching reality TV and saying "This show is so retarded." I don't have an answer for you, because at this point, the question isn't about your rights. It's not. You're an American; you've got the right to say whatever you please. (If you're not an American, then check your local listings, I guess.) You've also got the right to eat that pizza with the hot dogs in the crust or vote for Donald Trump. Being an American means you can do all sorts of horrible things.
Excerpt:
This is going to be the year that Schuyler finds her way. This is going to be the year that no tense meetings will be called and no krakens will be released, a year without confused tears and crippling social anxiety and a father feeling like a failure because his daughter has again slipped into the cracks of the world. This is going to be Schuyler's year.
Excerpt:
More than anyone else I know or have ever known, Schuyler possesses grace. It touches us all. The one thing that I can say for certain is that it's nearly impossible to meet Schuyler and to know her without being fundamentally changed. She has limitations, that is very true, and they are almost certainly more challenging than most people truly understand. But the limitations that hold her back the most are ours, I think. Our inability to grasp the world as she understands it, and our failure to make that world a better place for her. But God, how we are all trying. I'll be trying to do that until my very last living breath.
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| There was an answer to that question, too... |
Excerpt:
You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.
Excerpt:
The article suggests that with the passage of the ADA, many were led to believe that the struggle for disability rights was over, when in fact it was just beginning. It's more like people with disabilities who have been fighting for equality were finally told "We recognize the battle you've been waging, now here's a bazooka." Or perhaps more accurately, "Here's a rock."
Excerpt:
How do you discipline a kid for whom her own actions are as inexplicable to her as they are to you? How do you move forward when the lessons built into the situation haven't been learned, by any of the parties involved? How do you face a future where your kid's independence is due to be recognized by the law far earlier than is appropriate, or even feasible? And how far should you go to take pieces of that legal independence away from them? You can tell yourself it's for their own good, and you can even mean it and be completely correct, but that doesn't diminish the feeling that you're taking something precious away and stealing from them the thing that they, and you, have always valued and dreamed of the most.
Excerpt:
Schuyler's monster doesn't have a proper birthday. Perhaps it could be said to share Schuyler's. Even that doesn't feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn't yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.
Excerpt:
I feel fear for Schuyler, so much so that it weighs down on me, probably more than most people realize and sometimes more than I think I can handle. The future is an oppressive thing for me, but every now and then, with Schuyler's help, I can allow myself to imagine that it might not be bad, that she might have a shot at being happy, and maybe, just maybe, so might I.
Excerpt:
When things go wrong, when Schuyler meets up with someone who doesn't understand or care, when she hears the words meant to demean her or is simply treated with disregard, I think I've taken that as a larger affront than it probably is. They're not just hurting her feelings or standing in her way. I think on some level, they're tearing down her world. And that's something I simply can't let go unchallenged.
Excerpt:
There's so much that Schuyler is going to learn about her emotions, and the emotions of others. There's so much I want to tell her, the lessons I've learned the very hard way in my own life. I want to explain to her that her heart is fragile, but it's also tough, and that may not seem to make sense but one day she'll get it, when she thinks it's too broken to survive until she wakes the next morning and the morning after that and realizes that it perseveres. Somehow I want to tell her that she'll have people in her life who don't like her, and that's just part of life, but the hits that'll leave a mark won't come from them. They'll come from the people she loves, and who maybe even love her, but who won't be careful with her heart.
Excerpt:
Summer is Schuyler's time to be herself. She doesn't know what that means, not exactly, and there is always the possibility of change, something that scares the adults in her life a lot more than it scares her. But given her own space and her own pace, she's got a pretty fair chance of beginning to put all the pieces together, and preparing for the chaotic and unpredictable life that awaits her.
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| Filing STAAR test results in the appropriate place. |
Title: Ten Years of the Big Box of Words

Presenter: Robert Rummel-Hudson, Author
Schuyler Rummel-Hudson, Student/AAC user
Abstract:
Ten years since his daughter’s first encounter with Augmentative and Alternative Communication, Robert Rummel-Hudson (author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, St. Martin’s Press 2008) reflects on his family’s experience and his observations on the present and future of assistive technology and disability advocacy. He will be joined by Schuyler, who will share her own perspective on her life with her Big Box of Words.
Excerpt:
Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest. I don't know if that's a plan for success or if it's going to bite her face off one day. I only know that it works for her, and it gets her through days both simple and complicated.
And I know that in that regard, I envy my daughter very, very much. As I should. As should we all.
Excerpt:
Because she knows. Schuyler knows she's different. She senses it every time she verbalizes in public and gets that quizzical look from strangers. She absolutely knows it when she orders at a restaurant, her iPad reading her order aloud through a Bluetooth speaker with a crisp English accent, an accent specifically chosen because why not? Schuyler watches the kids around her grasp concepts that she has to work hard to handle, and she knows that this happens, the difference happens, because her brain isn't like everyone else's. In a world of special snowflakes, Schuyler is another thing altogether, and of this she is entirely conscious.
Excerpt:
When you see monkeys travel through the jungle, the thing that is most striking is their speed. They move fast, and when they release their grip on one vine, they are already reaching for another. They operate on faith. Faith that the jungle is healthy and the growth is consistent. Faith that there will be another vine waiting, and they won't reach out and find only air and a long drop to the jungle floor. It's not hard to imagine why parents of special needs kids might envy our monkey cousins and their confidence, and their faith that they won't fall.
Excerpt:
These days, Schuyler is interested in writing, which of course makes me happy in the most egotistical and selfish way. She writes, and not just for class but rather because she likes it. She wants to take her imagination and put it into motion. She doesn't usually write about herself or her own life, not just yet. Schuyler creates stories, almost always of the fairy tale variety, and she peoples them with heroes and villains and princes and queens, and monsters. Always monsters, usually antagonists but not always evil. Even now, she understands that sometimes the monsters of the world simply have their own agendas, and they need to be taken seriously.
