GUEST POST: The Queen of Monsters

Note: Schuyler and I were talking the other day about how she's going to use her new iPad Mini to express herself. She said she wants to write ("Like you, Daddy-O!"), and I asked her if she wanted to put together a little something for my blog. She said yes.

I helped her spell two words and I helped her clarify one concept that she was having trouble expressing, but otherwise it's exactly as she wrote it. (Before she changed it, she referred to her voice and her brain together as her "word box", which I thought was fascinating.) She even picked (and helped create) the picture.

Now, I'm not sure how to say this next part without sounding like kind of a dick. I'm not posting this for Schuyler because it's sweet, or cute, or precious, or least of all inspirational. If that's what you get from it, then you're missing the point. She's finding her expressive voice. There are some very revealing passages that you're going to miss if you simply think it's cute.

And that would be an incredible shame.

---

My name is Schuyler Rummel-Hudson and I am a 7th grader in Robinson middle school and I play the drums and the marimba. I like to draw and paint pictures with my friends. I feel happy about talk to my friends with my I-pad mini.

I feel about help others and teachers in my school and everywhere in the world!

I feel different about talk like this and I was born with my voice and my brain.

I feel sad I can't talk like my friends and I feel mad I don't have a voice.

I feel happy using my I-pad mini for the talk with my friends and my teachers and my family.

I going to get great use in the future I grow older. I want to be artist with my mom and I wants to help people are hurt. I wants to write a book about sea monsters and huge and mean monsters with my dad.

I wants people to know me is I love monsters and Greek stories. When I was little girl I feel tiny and alone and now I feel HUGE! I am going to BIG things with my family and my life in the world.

Your author,

Schuyler Rummel- Hudson :)

The Negotiating Season

Today at the 504:

Parents need to understand that their intimate relationship with their kid empowers them with a level of investment that can't be ignored and shouldn't be minimized. It's imperative that parents go in knowing what they need to know, and with a clear and sober understanding of their child's disability and what that might mean realistically. But in my opinion, parents also need to temper that with a philosophical open door. They need to overbelieve. They need to hold onto possibilities, because those possibilities have a funny way of turning into realities.

What We Need From Schuyler

This morning at Support for Special Needs:

Schuyler is a lifelong commitment, but she's also like a warm star at the center of my solar system. When I get lost, I know where that center is. When I get disheartened, I know where to turn to for warmth. The complexity of parenting Schuyler is something I can't even describe; in ways both large and small, the reality of being Schuyler's father changes every day. It's work with no job description; it's building something large and complicated without a blueprint. It's making it up as I go. And yet without that work, I'd be a shadow of the person I am.

Snapshot

My weekly lunches with Schuyler will end one day, and probably soon. I know that. I understand that she won't always want this. More to the point, she won't always need it. She'll find success in navigating the Lord of the Flies world of middle school. I'll be thrilled when that happens, even as I feel a certain selfish sadness, too.

One day she won't want this. But not just yet.

I join her for lunch like I do every Friday. Today, it's just the two of us. Schuyler is almost always the first to arrive in the lunch room. Today I stop by her special ed director's office for a moment, so when I walk into the lunch room, Schuyler is already there. She has her iPad out, and I can see she's sending a message. I feel my phone go off, but I don't look at it. I assume that she's asking where I am. Later, however, when I look at her message, it simply says, "Boo!"

I show up bearing Whataburger, and she's happy to eat some bad-for-her junk food instead of the mostly sensible lunches around her. She's happy today. Most days, lunch is when I remotely hear from Schuyler as she sends a short flurry of messages while she eats. I never know if I'm going to get expressions of anxiety over some complicated relationship with a persistent frenemy or an emoji farting monkey.

When I'm at the school for lunch, I can watch it play out in real time. Sometimes I see Schuyler watching someone with wary eyes, and I know something has happened, some interaction that has left Schuyler confused and hurt. Today, a girl with whom I know Schuyler has had frequent conflicts comes up to the table and greets her warmly, perhaps a little excessively so. I feel like I'm probably the intended audience for some of this, but Schuyler takes it at face value and delights in the attention. She is without guile, bordering on naive. But that's Schuyler, to the core. Her innocence scares me, but it's the thing I love about her perhaps most of all.

As we eat, her table fills up with girls she knows. They're not Schuyler's friends, not precisely. Many of them are from the HOPE program; neurotypical students who do things like eat lunch with and mentor kids with special needs. But they've grown close to Schuyler. They enjoy her company and gently tolerate her raucous sense of humor even when she's too much. Schuyler can sometimes be too much. It's another aspect of her personality that I value even when it's complicated.

When I visit Schuyler for lunch, I observe closely. I want a snapshot of what her life is like when she walks alone. I try to be a fly on the wall, which is hard for a 6'2" fat old man at a table full of thirteen year-old girls. Today, somehow, I achieve success. Schuyler has a new object of her eye, a boy with a hipster name, and she's pointing him out to her HOPE friends.

For a few moments, there's no boundaries between the typical and the broken. There's no communication barrier, no social fence, and no confusion. There is only a group of girls talking about the boys they like, and whether or not they'll gather the courage to talk to those boys, and what they think of each others' choices.

For a few minutes, before the societal narrative that so often holds them gently but firmly apart descends on Schuyler and her typical classmates, she's in the world in a way that means the most to her, without a monster and without that other monster, nearly invisible but so, so strong, the monster that walks among the world of the neurotypical and whispers into unimpaired young ears that difference is weakness, a thing to be avoided.

For a brief time, they were just little girls.

And I got to see it. My own monster stood in silent appreciation at the spectacle.

After Wooster, Part Two: On Being Human

In a larger sense, I guess perhaps it really is all about tools. In a sense, all the work that everyone associated with disability does becomes a tool. A tool, and a means to an end, that end being a sea change in how our society recognizes basic humanity. That end often feels too big, too much, too far away. It can be a disheartening feeling.

This was mostly the subject of my speech at Wooster. I didn't want to talk so much about specifics of Schuyler's experience with AAC, or what I'd learned as a parent, or to make myself sound like a swell dad or a fancy writer, or to make us all feel good about what we were doing. Schuyler's story is the story of every kid who ever needed help communicating to a larger world, and of every adult those kids become. Most of those in attendance knew Schuyler's story, whether or not they realized it. And I'm just a guy who wrote a book and was granted a platform in the world because I got lucky. I remain lucky, just a dumb dad who knows how to push words around in a way that people will listen to. What matters is what I do with it, I suppose.

I wanted people listening to my speech to understand that Schuyler's disability makes her life more challenging, but her difficulty mostly comes from trying to move through a world that hasn't made a place for her, or for those afflicted as she is, and certainly for those whose own communication is challenging in ways that go far beyond anything Schuyler has ever faced. I wanted people to think about communication, which I feel is the touchstone here, the piece that drives the rest. I wanted people to understand that communication requires that vast toolbox, full of possibilities that often don't even look like tools to our limited vision.

I wanted those who were listening to what I had to say to think about worth. I wanted them to think about what it means to be a human being, and whether or not love can truly exist where value hasn't been recognized and allowed to flourish.

I think the fight for equal rights (and a true shift in how we as a society value the disabled among us) must be expressed in the language of basic human rights. It can't be about entitlements, or how much is appropriate to do for kids with disabilities in school or the adults they become. It absolutely can't be about what we think we can afford.

It must be about what we CAN'T afford, and who we cannot allow ourselves to neglect if we want our humanity to thrive and not wither. It's not just about how we treat the afflicted among us. It's about what we are prepared to demand from ourselves. It's about what we wish to see when we look inward.

What I wanted to accomplish in my speech was big and difficult, and I'm small and flawed. But if I could reach anyone who heard what I was trying to say and recognized their own feelings that things can't remain like this, then it was a start. I would settle for reaching one person, if that person was committed to doing the hard work, the good work. And I believe I may have succeeded, which excites me and makes me hungry for more. Hungry for change, and for a transformation in what we as a society can recognize, within a breathtaking diversity of difference, as human and of real worth.

In my speech, I discussed Jean Vanier's belief that those with disabilities compel us to face two very difficult questions. "Do you consider me human? Do you love me?" In our journey to answer those questions, we reach a point of not just acceptance with those with disabilities but of real integration into the social narrative in a series of evolutionary steps. The first is fear, of the differences and of our own frailty. Next comes pity, which is only slightly better and certainly no more helpful. Most of us move on to a place where we respect persons with disabilities, and some of us move forward to a sincere desire to do the work required to help them.

But there's a final step that we as a society must make. The path to understanding the true humanity of the disabled is to enter into authentic relationships with them, and to reach a state of love through an unfettered grasp of their humanity in all its difference. That piece can be elusive, even to professionals. I'm truly grateful to programs like Best Buddies or the HOPE program at Schuyler's school that partners neurotypical kids with their special needs peers during lunch periods and school activities, but that's not the finish line. There is no finish line, but rather an evolution for us, one that leads to real relationships. Intimate friends, romantic partners, professional colleagues, bitter enemies, whatever. But connections that are real, and which aren't simply real in spite of the disabilities and the differences, but immersed in them. Human neurological and physical diversity as a driving engine of connection.

I quoted Vanier in my speech, but I could have quoted Paddy Chayefsky (through the voice of his character Howard Beale in the movie Network). "All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"

Either one works for me.

After Wooster, Part One: Vox humana

There's a great deal I could take away from my visit to the College of Wooster to give a speech last week.

I could share stories about good work being done by extraordinary people, or interesting new technologies and how they are being implemented by educators and therapists and companies like PRC (whose headquarters I visited and who couldn't have been nicer to me). The truth is, I took away more than I could ever explain. Wooster was a transformative experience. I showed up on Monday one person; I left on Wednesday a wholly different one.

But what I really want to talk about is dignity. Self-determination. What it means to be human, and to have value, and to recognize that value. And what it truly means to communicate.

Because this is the work being done. Its not about speech technology, or therapy, or language systems. Not entirely, or even mostly.

In part, it's about tools. After Wooster, I am more convinced than ever that the key to successfully unlocking communication among the nonverbal like Schuyler lies in giving them a toolbox that is bursting with options, many of them self-driven and perhaps hard for most of us to grasp, and then to get out of the way and let them take the lead in how they can most effectively and comfortably make themselves truly heard. That sounds obvious, but in fact it's an idea that frequently gets lost.

Many of us are out there trying to help our kids or our students or clients, and far too often we want so much to give them a magic pill that we ignore how we ourselves communicate, not just through spoken words, but through facial expressions, gestures, miming ("I said I'm walking against the wind! Also, I'm trapped in a box! Come on..."), text messaging, note passing, whatever. We don't think about this toolbox because we're accustomed to having a spoken language default. And I suppose we think in terms of a primary tool when we try to assist our nonverbal charges, to the point that we really only give them one or two big, impressive tools to be used in specific ways, dictated externally by others to somehow enable and allow expression of what's within. God knows I've been a serial offender in this regard. More ways to communicate means more options, and more possibilities. Using one tool does not make you less likely to use another. ("If he uses AAC/sign language/whatever, he won't be compelled to develop verbal speech.") It's a popular misconception, and it simply doesn't work that way.

The reality of communication defies the magic pill. Lindsey Cargill, speech language pathologist at the Helping Hands Center for Special Needs (and tireless advocate), points to a 1976 study by Mele Koneya and Alton Barber. It shows that a person's message is comprised of 55% body language and 38% facial expression and intonation. That leaves just 7% for the actual words themselves. Another study from 2009 shows that gestures are processed in the same part of the brain as spoken language, illustrating that gestures themselves are linguistic in nature. A third study found that kids with autism who gesture are judged socially to be more communicatively competent than their peers.

The other tools matter. And we need to pay attention to them, and treat them with seriousness when they are hard to read most of all. Depending on a single method of communication, one that we deem to be somehow appropriate or ideal, ignores the reality of how we communicate.

It can be complicated, too. In a way, Schuyler is the perfect illustration of how those tools really do matter. Her reluctance to use her AAC has grown over the past few years, in large part I believe because in everyday social situations, she brings all her tools to play. Facial expressions, gestures (oh, the gestures) and her intonation have been doing the heavy lifting for a while now. She's reached a critical point where she needs to seriously refocus on AAC to give her the ability to independently express herself more comprehensively and creatively.

How did that happen? How did a kid as deeply invested in assistive speech technology reach a point where she needs to recommit her efforts (and more to the point, the efforts of her team) to robustly utilize her speech technology? I believe it's because she has embraced the temptation to "pass" as much as she can as neurotypical, as most of the time, she's succeeded. I never want her to feel like she needs to pass, to hide who she is, but she's a thirteen year-old girl in the world of middle school. The pressure to fit in is enormous.

For Schuyler, and for a lot of nonverbal young people, there's a contradiction to be sorted out. She wants to be like everyone else, but at her age, communication has become central to that for her peers. Thirteen year-old girls talk, a lot. And it's a very specific kind of talk. It's constant, and seemingly random but loaded with subtext. For Schuyler to be a part of her peer group, she's going to have to find a way to truly join that conversation, and that is probably going to mean embracing her speech technology in a way that she's reluctant to right now.

The tool sets her apart. The tool gives her a kind of comprehensive language that she otherwise lacks, but it does so at a different pace, and in a way that is inherently unnatural. Our challenge in the coming months is to refocus her, yes. But it is also going to be to reconvince her. That's going to take some work.

Which is fine. I think it's going to be okay. I believe in Schuyler, as always, and in the possibilities. I've become a big believer in her future, and in my own. Our whole world seems transformative now. It's a compelling feeling.

The Trophy

Today, at Support for Special Needs:

Like their missing friend, every player on that field earns that trophy. For the members of these teams, there's no such thing as "just showing up".

On Inspiration

My latest post at the 504:

I think that any growth on my part must be because of Schuyler, because of her own giant trusting heart and her fierce, unconditional love for me, a love that I am desperate not to win, because I have it already and always have, but rather to deserve. Schuyler gets up every day and she moves into the universe like a storm front, and her success or her failure on any given day is almost beside the point. She perseveres because it's what she has to do to be in the world. And so I try to put myself together as a kinder and more humane person. A better person. The father she deserves.

Schuyler and me, at the time of her diagnosis

The Future Speaks

Today at Support for Special Needs:

This technology means a lot of things to a lot of people, but the universal power it holds is simple. It means independence. It means autonomy, of expression and self-determination.

Guest Author to Discuss Saga of Raising a Child Without Words

Guest Author to Discuss Saga of Raising a Child Without Words

Robert Rummel-Hudson, author of Schuyler’s Monster, will speak April 9 at The College of Wooster

April 4, 2013

Contact
John Finn - 330-263-2145 - Email

WOOSTER, Ohio — Robert Rummel-Hudson, author of Schuyler’s Monster: A Father's Journey with his Wordless Daughter, will share his story at The College of Wooster of Tuesday, April 9. His talk, which is free and open to the public, begins at 7:30 p.m. in Gault Recital Hall of Scheide Music Center (525 E. University St.). A book signing and a dessert reception will follow the event.

Schuyler’s Monster is the story of the relationship between a precious little girl and her family, particularly her father, struggling to find the answers to a child’s silent world. The book chronicles how their relationships formed without traditional language against the expectations of a doubting world.

Schuyler was diagnosed at 18 months of age with Bilateral Perisylvian Polymicrogyria (BPP), an extremely rare neurological disorder caused by a malformation of the brain that can affect the patient’s speech and fine motor control; cause partial paralysis of the facial muscles, tongue, jaws, and throat, as well as difficulties in speaking, chewing and swallowing; and result in sudden episodes of uncontrolled electrical activity in the brain, leading to possible grand mal seizures. Schuyler communicates through an Alternative Augmentative Communication Device (AAC), which is manufactured in Wooster by Prentke Romich.

Schuyler’s disability had a profound impact on her father, who went from a sarcastic, befuddled dad to a special-needs parent. Thrust into a battle against this rare and invisible disorder, Rummel-Hudson chronicles his own depression, his past family dysfunction, and the nagging suspicion that he was not the right person for the job. In the process, he discovers a sense of purpose and responsibility, and becomes the father and advocate that Schuyler needed to help fight her monster.

Rummel-Hudson’s lecture is sponsored by Wooster’s Department of Communication, the campus chapter of the National Student Speech Language Hearing Association (NSSLHA), the Cultural Events Committee, and Cross Cultural Connections.
Additional information is available by phone (330-263-2647) or e-mail.

Brick Wall Awareness Month

Today at Support for Special Needs:

Despite accommodations, our kids don't generally do well at all on these tests, and they find themselves deeply demoralized by the results. It's an area in which they cannot help but feel a direct comparison between their own abilities and those of their neurotypical classmates. In subjecting our kids to these tests, we add to the already daunting obstacles they climb every day, obstacles we can barely even comprehend. We don't generally learn much of anything about students with disabilities who take these tests. We learn plenty about the system, but nothing helpful. Nothing we didn't already know. 

Three Cheers for Inclusiveness

Today, over at the 504:

It's easy to make fun of the A for effort, the trophy for participation, but the fact is, for Schuyler and countless kids just like her, those trophies are the ones that sit on their shelves. And they're not cheap tokens of faint praise, either. It's impossible to overestimate the hard work and perseverance those trophies represent to kids for whom participation alone is a triumph. That very real accomplishment is made possible by programs like the Special Olympics, or the Miracle League in which Schuyler plays soccer and baseball with other disabled kids, or the inclusive cheerleading squad at her middle school. Schuyler and her friends try so hard to fit into the world. In programs like these, they succeed.

What We Need

Today, on Support for Special Needs:

There's a great deal that we all could use from those around us who love our kids and want to be a positive presence in their lives. We don't always know how to ask for help, nor do we often admit openly when we're in over our heads. That high water mark is different for us all. Some lucky parents might never get there. Others perpetually exist in a place of quiet desperation, and the people around them never suspect a thing, not until they really pay close attention. Sometimes you have to really be watching for it. Most of us won't ask for help very often. Very few of us will ask a second time.

Finding Her Own Voice

Today at the 504:

It's one of the dirty secrets of assistive voice technology. There are a million good reasons to use it, and the innovations advance remarkably every day. But as one noted assistive tech innovator pointed out to me as we sat in an exhibition hall full of the latest technology, "Every piece of assistive tech equipment in this room says the same thing to the casual observer. It says 'I have a disability.'"

A Father's Fear

Today at Support for Special Needs:

As a parent, those statistics are sobering. As a father, or at least as this father, these odds fly in the face of every protective impulse I feel, and I feel a lot of them, all the time. When Schuyler was a little girl, protecting her felt, well, not easy exactly, but it felt possible, at least. Now that she's thirteen, it seems as if the dangers to my daughter lurk in every darkened space, every hallway at her school, but most of all, those dangers hide in her own trusting and gregarious and naive nature. Schuyler understands a great deal, but she trusts very easily and is eager to meet new people, eager to a fault.

The Quiet Times

This morning, over at Support for Special Needs:

His advice to us has been more therapeutic than medical. "Let her be herself," he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it's just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it's good advice, even if it can be very difficult to take.

On the Word

As a part of today's observation of "Spread the Word to End the Word", sponsored by the Special Olympics and Best Buddies, I've written a new post over at the 504. Just revisiting some thoughts on "The R Word", from a recent speech:

In recent years, I've found myself getting caught up in exactly how unprepared the world really is for our kids, and how ugly the result can be. It's easy to forget. It's easy to become so insulated in our everyday lives as parents and so infatuated with our own beautiful children that we forget that to much of the outside world, these kids are simply perceived as being... less.

Traveling Companion

Today, at Support for Special Needs:

I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.

The Invisibility of Exceptional Children

Today, at the 504:

"Then there's the real kind of invisibility, the kind familiar to the poor or the disadvantaged. And most of all, the invisibility of disability, which manifests itself in a million different ways: the school board meeting where money is allocated to high profile programs like athletics while special education fights for inadequate resources; public discourse on special needs issues in which persons with disabilities are excluded from the discussion; conversations about persons with disabilities, in which they are spoken about as if they're an abstraction, there but somehow not there."

Autonomy is a Kind of Monster, Too

Today, at Support for Special Needs:

"Schuyler's differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she'll be okay with that for a while."