Showing posts with label schuyler. Show all posts
Showing posts with label schuyler. Show all posts

September 28, 2015

Wonder On Loan

Today at Support for Special Needs:
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.

September 10, 2015

The Tao of Daddy-O

When Schuyler was little, and I mean very little, back before she was even a real person just yet, I would worry about things. Some of my anxieties were sensible, regular parent stuff. Others were frankly kind of weird. I worried about big bitey dogs at the park in New Haven, and maniacs grabbing her out of her stroller on the upper level of the mall and throwing her over the side. And don't even get me started on those gaping rain gutters at the side of the road. I worried about a lot of monsters, although ultimately I guess I missed the real ones.

Sometimes, many times, I worried about what my bond with Schuyler would look like as she grew older. My relationship with my own father wasn't a very good template. He wasn't a gentle person with me when I was young, and as I grew up, my father softened but still never quite understood the man I was growing up to be. I think he wanted to sometimes, but he was perhaps limited in the scope and diversity of his thinking, and I was that walking cliché, the angry and unforgiving teenager. I always thought we'd figure it out one day, but it didn't quite work out that way. Four years after I'd last seen my dad, when I received the phone call from home, he'd been gone for a few hours already. He was alive one moment, chatting with a neighbor in his yard, and then he just crumbled, dead before he hit the ground. He suffered an aneurism in his heart, which I didn't even know was a thing. I was twenty-two. He's been gone longer than I had him now, but I don't think I ever actually had him, not really.

I never had a good example of the kind of father I should be to Schuyler, although I guess I had a pretty reasonable cautionary tale instead, and that was probably good enough. I never knew exactly how a father was supposed to be, so instead I just gave her me.

I didn't know back then if that was going to be enough. I'm certainly not sure now. But I remember a few things about being my father's son. I remember feeling like I wasn't being told the truth, which it turns out I wasn't, and I remember feeling invisible, even disposable, which as it turned out, I kind of was. I recall, in the center of me where the visceral memories live, wondering if my father loved me, and now, only four years younger than he was at his death, I still can't answer that for sure. It's taken me a long time to understand that whether he did or not isn't my concern, not really. Maybe he didn't. He probably should have; I was a pretty cool kid, relatively speaking. So that's on him.

With Schuyler, I've written many times that I could promise her love, and I could promise her the truth. I've probably dropped the ball on that second part more than a few times, but if there's something I think I can say for sure, it's that she's never asked herself if her father loves her. If I were gone tomorrow, she wouldn't spend the rest of her days wondering. And if that's all I ever gave her, I don't know. Maybe that's enough.

I believe Schuyler sees her father for who he is, and that's not always easy for her, I know. She watches me lose my temper, she hears me tell inappropriate jokes, and perhaps most importantly, she sees me when I'm sad. I used to worry about her, deeply concerned that she'd inherit my tendency toward depression. I still worry about it sometimes, but not as much now. Schuyler gets sad, and God knows she's got reasons to. But she seems to be made of stronger stuff than I am. I suspect she's going to be okay.

Schuyler sees when I'm in that little cave. She's observed it a lot lately, and I can tell she understands. We don't talk about it much, but she's cuddlier, quicker to hug and slower to let go. She'll sit next to me on the couch and just take my hand, or touch my shoulder. I don't know if she means to, but I feel like she's telling me I'm not alone, at the moments she senses I feel it the most.

When she was younger, I used to imagine, perhaps morbidly, what she would remember about me if I were gone. As she grew older, I'd be less of a memory and more of a constructed father idea. When I was really down on myself, I sometimes imagined that wouldn't be so terrible for her. She could have a real, live, fucked up father, or she could have a shining ghost, a phantom who would fill that father space, even just in her inventive heart, in ways I probably never could in real life. Tragic, to be sure, the little girl growing up without her father. But the world would step up and take care of her, and I'd be whoever she needed me to be.

Schuyler is now fifteen, almost sixteen. If I were gone now, she'd have memories of me. Actual flawed me, but one she seems to love quite a bit. I don't think I brag very often, and I'm not sure I feel like I have a lot of horns to toot if I wanted to. But if you were to ask me what was truly good about my life, and what I was proud of about myself, I think my answer would be pretty clear. I have a weird and wonderful kid, the very best of all possible daughters, and she loves the fucking shit out of me.

When Schuyler was younger, somewhere she picked up a word that she began to call me. I was her Daddy-O. I never thought it would stick, but it has. And as goofy as it may sound, it's absolutely and truly my favorite word in the world.

Schuyler is unique in all the world, in ways that go so far beyond human individuality. Even among folks who share her polymicrogyria, Schuyler presents in a way like no other. To the neuroscientists who have worked with her, she is a mystery, and a marvel. To them, and also to me, albeit for far different reasons.

And I am her Daddy-O. She has given me a name that none of her friends use for their fathers, and I like to think that she's signifying my own uniqueness, too. I'm not sure how true that is, but I take her affection as the gift that it is. I don't really know what I father is supposed to be, so I do the best that I can. Schuyler doesn't know, either, and so even if I am a disappointment, or should be, to her I am that thing that belongs to her and her alone. I am her Daddy-O. No one else gets one of those but her.

There's something strangely comforting now, knowing that if I were gone next year, or next month or tomorrow, Schuyler would have had a me that was real, and one she could remember as a person, as her Daddy-O. She would have walked down a path with me. It wouldn't be a perfect path, and we wouldn't have walked as far together as we would have wanted. But we would have had enough for her to figure out the rest of the way without me. She would know how to laugh and how to love, although if she learned them from me, she would have learned to laugh a little too loudly and to love imperfectly. Neither of those are all that bad, I guess.

I don't know much, either about myself or the future, near or distant. I feel like I know less and less every day, and to be honest, that has been troubling me a great deal of late. Touchstones crumble under our fingertips, and our hearts whisper possibilities in our ears until we hear them as truths. I'm struggling right now, to locate myself and to find my way, like I'm looking for candles in a kitchen drawer during a power outage.

Schuyler knows it, too. I give her smiles and jokes, and she accepts them, but she's the most empathetic person I've ever known. She knows the ground under my feet shifts sometimes, and she responds with love. With love, and with confidence in me, because I'm her father, her one and only Daddy-O, and everything else will sort itself out.

Schuyler believes this. It's important that I try to believe it, too.

August 31, 2015

The Elusive Place

Today at Support for Special Needs:
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.

August 17, 2015

This Year

Today, at Support for Special Needs:
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.

August 10, 2015

The Girl Unseen

This morning, at Support for Special Needs:
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.

August 4, 2015

Schuyler Answers

Back in June ("Schuyler Will Now Take Your Questions"), I invited you to submit questions for Schuyler to address in our joint presentation, the first we'd ever given, at the Region 10 Education Service Center's Summer LifeSkills Boot Camp 2015. The presentation took place yesterday, and as I mentioned over at Support for Special Needs, it went really well.

I think it's safe to say that for as long as Schuyler wants to do it, and assuming we're asked to speak again, this will be the format my future presentations will follow, with ever-increeasing participation from Schuyler. She says she's game. (She wants to present in Hawaii. I'm not opposed to this idea.)

As I promised at the time, and of course with her permission, here are some of Schuyler's answers and statements from yesterday's presentation.


Hello, my name is Schuyler Rummel Hudson and I am a tenth grader at Jasper High School. I'd like to talk about my life and tell you why I've been using my devices to help me talk. First I used a HipTalk, then my Vantage, which I called the Big Box of Words, and then my Vantage Lite that I called Pinkessa. Now I use an iPad Mini called the Queen of Monsters with my speaker. I am happy to be here with my father and mother to share my story with all of you.


In my AAC class at Gulledge, we learned to use a computer, our devices, and to read books. Every day I went to my other classes after the AAC class and used my device in class. Back then, my teachers worked together, but now they don't. Some of my teachers did know how to use my device, and some didn't with my big box of words. Now, most of them understand better than back then. It think it’s because I have an iPad and they know how iPads work. I learned a lot about how to use my devices back then. I don't think I need a class now but I miss being with my other friends who talked like me.


Which app do you use for speech? Why did you choose that app?
LAMP Words for Life, because it works like my old devices, the Vantage, and helps me to talk to others.

What else do you use your iPad for?
Games and movies and drawing and listening to music. I use it to send messages and Facebook.

What are your favorite games?
Monument Valley and Subway Surfers

How do most people who are meeting you for the first time react when you talk with your iPad? Positively, or negatively?
Positively. They think it is cool and ask questions about my iPad.

What is your favorite accent to use on your device?
I use Emma voice with a British accent.

If you could change one thing about your communication device, what would you change?
I like it the way it is. My iPad is not loud but I have a speaker.

Do you notice people treating you differently when you are using an iPad than when you were using the Big Box?
With the Big Box of Words, they think that I am dumb and weird. When I use my iPad, people think I am like anyone else.

How would you explain your speech device to someone who had never seen someone talk like you do before?
It speaks for me because my brain doesn’t want me to talk.

Can you talk a little bit about how you make the choice to use your own voice or use your iPad to communicate? For example, which situations you would never use your iPad and which situations you would always use your iPad?
I sometimes try to talk with my voice first. When people can't understand me, I use my I-pad to talk. I use it at school in class. I also use it to order food when I go out with my parents.


What are some things that teachers have done that have helped you to have good experiences in the classroom?
I get help with math and science at my school. If I don’t understand the problem, my teachers tell it to me different.

What are some things that teachers did that you didn't like, or that you found unhelpful?
Sometimes they go too fast and they don’t help me.

What is the one thing you hate people presuming about you, before they know you?
They think that I am dumb and weird and I am not smart at all.

What has been your favorite thing about school?
Meeting new friends and teachers. I like to learn new stuff. I like playing percussion in the Jasper Marching Band.

What is your least favorite thing about school?

(Accompanying slide)


What do you plan to do after high school?
I think I am going to travel to Hawaii and China. I want to get married and get a job.

What is your favorite movie? Why?
I have a lot of favorite movies, it's hard to pick. I like Jurassic World and Godzilla and Pacific Rim. The movie I’ve liked the longest time is King Kong. That will always be my favorite movie. I like monster movies with my dad.

What is your favorite thing to do for fun?
Play the Wii U with my parents. I also like to swim and play soccer and baseball in Miracle League.

What made you decide to dye your hair?
I want to be different but I want to pick how I’m different.

Who do you see as your role models or people you really admire?
Amelia Earhart and Stephen Hawking

What do you want to do in the future?
Maybe to help sick children and the poor and people like me with little monsters of their own.

If you could tell people one thing about your little monster, what would you tell them?
It makes it hard to talk and sometimes it makes it hard to understand things. My monster is a butthead!

If you could tell your little monster one thing, what would it be?
Get out of my head!

What kind of music do you listen to? What is your favorite song?
I have a lot of favorite songs, it is hard to choose one. Right now I like Waiting for Superman and Black Widow and Release Me. My favorite artists are Lady Gaga and Florence and the Machine and Selena Gomez.

I'd like to know, what do you like about Plano and the Dallas/Fort Worth area?
I like Six Flags, the Dallas Opera, Hawaiian Falls, Mexican food, and the zoo.

If you moved away, where would you like to live?
England or Hawaii or Vermont.

Do you see yourself becoming a writer like your dad one day?
Sometimes. I like to write stories and poems.

What do you like to learn about?
Art and science

What is your favorite season and why?
Summer, because I can see my dad's friends and have fun and swim!

What is the best Halloween costume you have worn?
I have a lot of favorites. Medusa and Amelia Earhart and Brunhilde the Valkyrie.

(Accompanying slide)
What skill do you want to improve?
Listening and being a percussionist who plays the drums.

If you had a ton of money, what would you do?
I would travel and see the animals in Africa.

What is your best personality trait?
I am funny and always happy and a good dresser.

What do you love about your life?
Having the awesome parents and the best friends too.

What is one thing you thought people would ask you but no one did?
No one asks about my favorite monster.

There was an answer to that question, too...

A Partnership

This morning at Support for Special Needs:
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.

July 27, 2015

Rough Numbers

Today at Support for Special Needs:
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."

July 20, 2015

Steps and Stumbles

Today at Support for Special Needs:
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.

July 13, 2015

Twelve Years

Today at Support for Special Needs:
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.

July 7, 2015

Future Perfect

This week at Support for Special Needs:
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.

June 29, 2015

Assembling Schuyler's Armor

Today at Support for Special Needs:
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.

June 22, 2015

Untold Stories of the Secret Heart

Today at Support for Special Needs:
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.

June 15, 2015

The Freedom of Summer

This morning at Support for Special Needs:
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.

Filing STAAR test results in the appropriate place.

June 9, 2015

Schuyler will now take your questions.

As I have mentioned before, I will be presenting the keynote address on August 3 at the Region 10 Service Center in Richardson, Texas. Here's the information:
Title: Ten Years of the Big Box of Words

Presenter: Robert Rummel-Hudson, Author
Schuyler Rummel-Hudson, Student/AAC user 
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.

The most interesting thing about that abstract is the fact that Schuyler will be joining me, as a co-presenter. As we start putting our presentation together, she's trying to organize her thoughts. After talking about it, we'd decided that rather than just sitting down and trying to write something off the top of her head, Schuyler would rather answer specific questions and integrate that into her presentation. And she would like to get those questions from the many people out in the world who have followed her story for so long.

So if you have a question that you think would help Schuyler present her story, you can ask it in the comments here, on my Facebook page or via email at We talked about what kinds of questions she'd be asked, and came up with some categories that she's comfortable with.

1) Her use of assistive technology over the past ten years.

2) Her experiences in school.

3) Her experience with polymicrogyria, her "little monster".

4) Her future, both school and her adult life.

5) (And this is a big one, I think.) The parts of her life and her world that have nothing to do with her polymicrogyria. The Monster-Free Zone.

We both thank you in advance. After our presentation on August 3rd, I'll reformat her answers and post them here for everyone.

Might Have Been

Today at Support for Special Needs:
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.

June 1, 2015


This week, at Support for Special Needs:
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.

May 25, 2015

The Faith of Monkeys

Today at Support for Special Needs:
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.

May 18, 2015

A writer in the family

Today at Support for Special Needs:
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.

May 12, 2015

Running the clock

Today at Support for Special Needs:
We talk about this a lot, and I suppose I write about it pretty often, too. I won't apologize for the repetition; it's the colossal bugbear that haunts our thoughts and disrupts our sleep. Three years. Just three years remain before Schuyler is out of school. Three years to figure out what that looks like. One more year of high school, then two years of senior high. (Don't ask; her school district does things weirdly.) And then she's away, off on the next adventure. What that looks like, no one knows. But it's coming up fast, and that inevitability is beginning to inform more and more of her life.