Father's Day at the Huffington Post

The very cool folks at the Huffington Post asked me to contribute an essay for Father's Day, so here it is, "What I Know About Fatherhood Now That I Have a Teen With a Disability":

In the midst of all my fretting and errors, Schuyler has quietly persevered, and found her own successes. With time, I've finally started to see how she might make her way through a rough and beautiful world.

And I like to think I've learned a few things, albeit through trial and error and error and error.

Happy Father's Day to all you dads out there, and to all of you who are doing the work of fathers. Our moment in the sun may be fleeting, but maybe you'll get a nice tie out of the deal.

Sea Change and Mr. Baseball

When I write about how truly effective disability advocacy requires entering into authentic relationships with the disabled, it helps to have some solid examples of what that might look like.

Meet Cory Hahn.

(Mark Boster, Los Angeles Times)

Just a few years ago, Hahn had a future in baseball. As a high school player in California in 2010, he was selected as the state's Mr. Baseball, batting .411 and leading Mater Dei High School to a state title. He was drafted by the San Diego Padres in the 26th round, but turned down the selection in order to attend college at Arizona State.

It was in his third game with the Sun Devils, in February 2011, that Cory Hahn slid headfirst into second base and suffered a spinal injury that left him paralyzed from the chest down.

Cory Hahn had a future in baseball. As it turns out, he still does.

This week, in the 34th round of the Major League Baseball draft, Cory Hahn was selected by the Arizona Diamondbacks.

We've all seen stories about kids with disabilities being allowed to come out on the field of play and participate in some way for a few minutes. They are typically feel-good stories, and there's a little something in it for everyone. The person with the disability gets to experience that participation, the other kids and coaches get to feel that intoxicating feeling of Doing Something Good, and the media gets a story that passes for a little good news before moving on to the gruesome crime of the day.

Most of all, we as a society get to feel as if something has been accomplished, that some measure of social justice or real advocacy has come to pass. It's inspiration candy. It gives us a quick sugar high before things go back to the way they were. The disabled kid of the moment takes off his football jersey and goes back to his special education class, and that class will be just as satisfactory or just as lacking as it was before. As a lasting legacy, he receives a newspaper clipping, not a future. Inspiration candy isn't nutrition. It can be well-intentioned, it can be sincere, and it can come from the very best place. But it can't be the end point. It can't be the standard for which authentic relationships with the disabled are measured.

On its surface, the story of Cory Hahn's selection by the Diamondbacks felt suspiciously like inspiration candy. Barring a medical miracle of biblical proportions, Hahn is not going to play ball for the Diamondbacks. His draft by the team on its own is symbolic of their respect for him as a player and as a dedicated human being, but it's still symbolic. When I first read this story, I was hoping for more.

There was more.

From the Huffington Post:

The Diamondbacks emphasized to The Huffington Post on Monday that they intend for the pick to be more than just symbolic. The organization plans to offer Hahn a job, perhaps in its farm system at first. 

Team president and CEO Derrick Hall wrote the following in an email to HuffPost: 

"We have not discussed with him so I would not want to get too far ahead, but we would like to ease him in during his final year of school, perhaps video work with our minor leagues based out of Salt River Fields and then look to full-time baseball operations opportunities upon graduation."

In another statement, Derrick Hall said:

"We want to make this permanent. We don't this to be just about the selection and him being a draft pick. but about him working in full-time employment with the Diamondbacks."

After returning to school, Cory Hahn has been working as an assistant coach with his old team. Hahn's talents and his skills are more than his physical abilities, and the Diamondbacks recognize that. Picking him in the MLB draft has PR value, but committing to a long-term professional relationship is something else entirely. Major league baseball teams make decisions like this based on what's best for their organization. In looking at Cory Hahn and what he brings to the table, the Arizona Diamondbacks have done just that.

This is what those authentic relationships can look like. Beyond pity, beyond charity, and even beyond a truly sincere desire to help. When relationships with persons with disabilities become mutually beneficial, when both parties find growth and value, and when the abled recognize the incredible potential when taking the time to explore possibilities that don't present themselves in an easy way, something very new and very real starts to happen.

This is the sea change that so many hope for. This is what that might look like.

Becoming Superfluous

Today, at Support for Special Needs:

I know now that Schuyler can make it without me, and probably even thrive. I understand in a way that has perhaps eluded me before now that if something were to happen to me, if I were to be run down by a train or crushed by an errant piece of some uninspected airliner falling from the sky, Schuyler would be taken care of. More importantly, she would be on the road to taking care of herself.

On the Question of Humanity

Today at Support for Special Needs:

Not every dehumanizing party sounds hateful. The most dangerous among them sound downright reasonable. They are the ones who stand most defiantly in the way. They are the ones who go to city council or school board meetings and with voices both calm and reasoned make the policies that weigh down our loved ones like chains, or make them invisible altogether. They are the ones who make services and education for the disabled sound like entitlements, or luxuries that we might be able to afford next year, perhaps. They are the ones who reject individual social responsibility in favor of community Darwinism, and make basic human rights sound like a choice that we can easily reject and still sleep soundly when we get home.

Conversations

Today at Support for Special Needs:

There has been so much conversation, so many choices to be made, all focused on enabling Schuyler to have the opportunity to fully realize the potential of the technology that so many people worked so hard to provide to her. That technology has changed her life. The early years are crucial to language development. It was almost too late when she first started at the age of five, and we did what we had to do to give her that tool before the doors slammed shut for good, pride and principles be damned. I would do it all over again, except years earlier.

She's waiting.

Schuyler's IEP Redux took place yesterday. Her previously unsatisfactory speech and language goals were revisited and the new plan for restoring Schuyler's AAC proficiency was worked out, at least on some level. How did it go? I'm not sure how to answer, honestly. The specific goals we wanted were added with a minimum of resistance, and some really good discussion took place that I think will lead to improvements next year. There's a big thing we're asking for that I don't think we're going to get, and it feels important enough that I really believe that without it, everything else might just fall apart, so I'm advocating hard. But no decisions about this big thing were made yesterday, which I suppose is something not altogether like bad news.

The meeting was going well, and Schuyler was listening attentively to our timeframes and our plans for implementing better AAC standards. She answered questions and understood (and agreed to, more importantly) the things we asked her to consider for next year. It was clear she was thinking a great deal about all this, about how her verbal expression needs to take a backseat to her assistive technology for now, and the kind of communication she needs to focus on in the near future. We've talked about all of this before. Schuyler is facing the future of her own communication, and she's making plans.

It wasn't until she passed us a note during the meeting that I realized all over again how much her plans still include the miraculous.

"How I can talk like my friends?"

Schuyler is looking at the things we're asking her to do, and I think she's going to be willing to do the work required to make those things happen, and to improve her situation.

But she's also waiting. She's waiting for someone to tell her when she'll be able to talk like everyone else. She's waiting for a solution, and a miracle. She's waiting for this to be behind her. Schuyler is waiting, patiently but steadfast, for her monster to leave her alone at long last.

She believes she will talk. And no amount of discussion about her brain's deeply, congenitally flawed architecture is going to divest her of that belief.

It's heartbreaking. We have this discussion every so often, maybe twice a year, and she always accepts the reality of what she's told, but with an unspoken caveat.

"I'll accept that. For now."

And the worst part is, I get it, because I don't allow myself to completely let go of this most improbable of dreams, either. I overbelieve, and sometimes that means keeping the door slightly ajar, like accommodating the return of a runaway cat that's been missing for months, or even years. I do my overbelieving quietly, because expressing it out loud doesn't do anyone any good.

Schuyler waits for something that will almost certainly never come. Even knowing the reality of her condition, I can't express that without including the "almost". She waits, and she never gives up on this hurtful dream. Knowing that it hurts her, I still can't bring myself to tell her that it can never happen, because I owe her the truth, even if it's just MY truth. And my truth hasn't given up hope, either.

This summer will mark a decade since Schuyler's polymicrogyria diagnosis. She's been waiting for someone to help her, to cure her, to fix what's broken, for ten years now. It breaks my heart that she's still waiting hopefully. It also binds my heart together a little to quietly and secretly hold onto a few strings of that hope with her.

We're fools, the both of us. I can live with that.

The Things That Matter

Today at Support for Special Needs:

It's easy to get lost in the world in which we live. It's so easy to forget how quickly things can change. It's not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child's brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it's grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today's manageable monster may grow fierce and hungry in an instant.

One Small Light

Today at Support for Special Needs:

If you're here, you get it. You're almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn't small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I'm right, that sounds exactly familiar. Or you might say I'm full of crap. But you're probably never going to say "Oh, that never occurred to me." Because if you're in the club, there's very little that hasn't occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.

No Heroic Measures

Hero. It's a word that gets thrown around rather freely, particularly in the disability community. You read about hero teachers who change the world for a kid. You read endless stories and remarks about hero parents who do things that other parents say they could never do. (This is bullshit, by the way. No one is ready to do what special needs parents must do. You learn how, usually through screwing up dramatically, you figure it out, and you do so in a hurry because who else is going to do it? You figure it out and become a "hero", or you put a hose in the tailpipe of your car in the garage and you give up. Most of us heroes choose the first option, for some reason. Well, that's what makes us so heroic, right?) You read about heroes in the community who do heroic things like daring to treat someone with a disability like a human being who has intrinsic value.

We seem to have set a pretty low bar for heroes.

I think perhaps the most troubling use of that term is also the one that is the easiest to embrace. The heroes aren't those of us who care for kids with disabilities. At best we are sidekicks, or the eccentric scientist who creates crazy cool tools for Bruce Wayne. But he's still the guy who has to take those tools and go be Batman. If anyone is a hero, it's the child with a disability who steps up and perseveres and overcomes obstacles, right?

Except it's not that simple. It's not that heartwarming, and while it might make for a sweet story on the Today Show, you can decide for yourself if one more piece of inspiration candy ultimately represents a positive step forward.

Kids like Schuyler aren't heroic. They aren't "differently abled" (unless they can fly or shoot lasers out of their eyes). They aren't here to teach us how to be better people or to show us the way to God, although they most certainly do both those things. Schuyler wasn't born to turn me from an asshole to, well, perhaps somewhat less of an asshole. Her existence isn't predicated on her ability to inspire others. She does these things, but she does so largely without trying, and without any responsibility or expectation.

Schuyler doesn't want to be a hero. She wants to be a Schuyler.

Kids like Schuyler ultimately forge their life's path for themselves, either with the help of good people or despite the machinations of bad ones. That effort can look heroic. It can require years of patience, and feats of herculean personal strength. Able bodied people can look at that effort, and we can see heroes. But it's important to remember that when we do this, we are unintentionally making a statement, to ourselves and to the world and to our kids.

We are setting them apart. We are identifying them as different, and even if in our eyes that difference is a good thing ("heroes!") rather than a thing of pity ("people who are less"), it's still an isolating difference. Kids like Schuyler face the fact that they are different every day of their lives. Some of them simply feel different; others feel broken. And the hard truth is that both of those things are probably true.

Kids with disabilities aren't engaging in heroics. They are engaging in life, striving for the things that make us all human, even if they are different, even if they are impaired, and even if they are broken. When we fetishize that work, when we elevate their daily struggles into heroics, we miss the opportunity to give them places at the table. We give adulation when the most valuable thing we can offer instead is authentic relationships.

Superman is a hero, but does he have any friends? He's a superhero, even, but can he have those authentic friendships if he's not perceived as human? (He has his "Super Friends", true. But it's important to note that they, too, are superheroes. Outsiders. Heroes set apart.)

Does that loaded word, "hero", accomplish anything positive, or are we better off without it altogether?

Now, having said all that, I must confess something, a weakness stemming from fatherhood and perhaps from overbelief. I recognize the folly of the hero concept, but I don't always push it as far away as I should. I know better, but the honest truth is that sometimes Schuyler can feel a little like a hero to me. That's not just because she was given a brain that is literally about three quarters broken and yet she's ambulatory and smart and funny as hell and a swell percussionist and a natural poet. She didn't decide to make that busted brain work despite itself. That was just one of those inexplicable miracles of science.

Sometimes, though.

Sometimes I watch how she navigates the crap hand she was dealt, and it doesn't look all that bad to me, not the way she does it. Not all the time, or honestly even most of the time, but in those Chumbawamba moments when she gets knocked down and she gets up again. I don't always see how she does it, and I wish I had those deep wells from which she draws, the ones that power her through the hard spots, which are many. I feel that way even when I realize, very occasionally, that perhaps I do possess those deep wells after all.

Schuyler isn't a hero, and she shouldn't be lauded as one, lauded and separated and ever so slightly dehumanized. She's not differently abled, she isn't a special little angel of God, and she's not doing things that any other kid wouldn't try to do if placed in a similar situation.

She's not a hero, but she is a remarkable human being. If I absolutely required the services of a hero, I suppose she would do in a pinch.

Tooth and Claw

Today at Support for Special Needs:

Overall, it wasn't a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we'd resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.

Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post.

GUEST POST: A Poem by Schuyler

(I was alone with no ones there!)

The grass looks green and the sky looks blue but everything else looks gray
The pine tree looks monsters and the sea looks horses in the hill
The desert looks brown and it feel tiny and alone with no one there
The mountains looks old and wise likes wizards with their masters
I feel tiny and alone with no one there in the dark cave.
I feel super tiny in the deep way of the ocean.

-- Schuyler Rummel-Hudson

Photo concept by Schuyler

Schuyler's New Tool

This afternoon, over at the 504:

Most of all, accommodating the social integration challenges of assistive technology gives Schuyler and kids like her the possibility of a measure of independence and self-determination. Those are goals that are both persistent and tenuous. For Schuyler and her friends, self-advocacy is vital, but it flutters through their lives on gossamer wings. It's delicate, and it falls apart so easily.

Field of Dreams

Today, over at Support for Special Needs:

It's so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It's easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors' names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn't right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

"...and I just want to go with you..."

Mothers and fathers have very different relationships with their children. I would never try to describe Schuyler's relationship with her mother, mostly because it's not my story to tell, and I don't understand it all that well myself.

As she grows older, I like to think that Schuyler's relationship with me becomes easier to comprehend, although that's not a given. It's certainly stronger now than it's ever been, which to the parent of a teenager is a very welcome surprise. And yet, it is still very much true that our best moments come in wordless appreciation of each other. We curl up together on the couch and watch terrible monster movies, or play games together on her iPad, or wait outside in the morning air for her bus. Quiet moments sometimes, rowdy at others, but always with an indescribable ease, and the sense that we'll always have each other, no matter what comes our way. This is a great comfort to us both, even if it's fiction. Which it probably is.

She calls me Daddy-O. I call her any number of nicknames. Schuyler Bear. Spacemonkey. Chickenhead Jones. We call each other "Big Dummy" in public places, attractive disapproving looks. Which is fine; that's probably why we do it. We step on the heels of each others' shoes when we walk through stores. We are incapable of walking past toy lightsabers without slicing each others' heads off. We share waffle fries, but she always gets the end pieces, which we call "potato butts". When I ask her if she wants to eat a butt, she always says yes. Burps are always appreciated for their merit. Farts are always funny.

The more I learn about self-advocacy for people with disabilities, the more I feel like I learn from Schuyler's interactions. She does so much communicating, so much of it in ways beyond traditional verbal expression. Talking with Schuyler means taking in so much that is spun out of her wild gestures and her expressions and the tattered remnants of her sign language. Schuyler can be easy to follow sometimes, and yet get her on the phone and she becomes almost impossible to understand, even for those of us who live with her. Schuyler's language is an amalgam of all the ways we all try to make ourselves understood, but it works in a way that is entirely her own. Understanding Schuyler means paying very close attention to her. And that close attention is rewarded, not just in communication but in a kind of intimacy, a closeness that she delights in.

I'm overprotective of Schuyler, even when I try not to be, when I know that she'll be better for taking flight on her own. I let people into her life very sparingly. Sometimes I regret it wildly; most times, she grows from the friendships she makes and I guess I do, too. I watch Schuyler try to navigate her own friendships with kids her own age, and I wish I could make it easier for her, but of course I can't.

There are times that I see something else in Schuyler, something familiar. I watch dark shadows cross her eyes, and I see her frustrations rise at simple obstacles. I observe her need for solitary time, not playing or reading but simply watching videos on her iPad or just sitting. I recognize some of it. I know that we all have our own little monsters, and I fear that polymicrogyria isn't the only one I've given to her. I was probably Schuyler's age when I became aware of my own sadness, the kind that arrives on silent feet and turns the room upside down. I've never done a very good job of managing it, although I've started getting help with it. We're making sure that Schuyler gets help, too. I'm not sure if I'm entirely past my skepticism of that help, but for her, it's a given. She's got a lot that she needs help with. That's not one that she needs to face alone.

We talked about it yesterdayday, when she noted that I seemed a little sad. I explained how for some people, sadness just kind of happens, and it's a thing that we deal with as best as we can. It's just something that happens inside our brains.

"Like my little monster?" she asked. When I said yes, she said "You have a little monster, too!" She was extremely pleased at this, for reasons that both defy explanation and yet make perfect sense.

I don't know if Schuyler will fight that same battle as she gets older. But I worry that if she does, my own sad monster will devour me, as I often feel like it inevitably will, before I get a chance to help Schuyler cope with hers. I hope she learns how to do that better than I ever did.

A Question of Trust

I have trust issues. I know this. I'm working on that.

Recently I posted a piece for Parenting.com ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.

It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.

If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:

Me:
As parents, we advocate for our kids receiving as much in the way of services as we can get, and we do so knowing that our success could very well mean fewer resources for other students. That sounds harsh, but we shouldn't worry too much about that, because the school's position is the opposite. Giving each student as little as they can in the way of individual resources means more for everyone. It's an awkward dance that shouldn't be about money and resources but absolutely is.

Um, no. We do not sit at the table thinking, "let's give each student as little as we can because that means more resources for everyone." We sit there and think about what will be best for each individual student. As teachers we are passionate about your child- we want your child to succeed and we want your child to make unbelievable gains. We also know that some things that look like they will be beneficial actually can be a determinate to your child's learning. Some services look great but will hinder your child's ability to scaffold his/her learning, transfer skills and be independent. And then there is the legal aspect that we are, in fact, held to. Schools are required to provide what is considered a "free and appropriate public education" (FAPE). Sadly appropriate doesn't always transfer to your child achieving their full potential. This "appropriate" piece stumps us too. It's not us, it's the law and the courts and how the word appropriate is determined. But many of us, if we think there is a way, will fight for you.

I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.

Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.

But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.

Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.

Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?

But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.

How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.

The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.

Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.

So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.

Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.

Special needs parents are probably herbivores. But we do have T-rex dreams.

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."

Alone on a Crowded Sea

‎Today, at Support for Special Needs:

"I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don't think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it's more like there are a great many little boats bobbing around in the same dark sea. And perhaps that's the best we can hope for. Tend your little boat, and find the friends with who you can tie onto for a time and help each other."

A Break from Passing

Today at Support for Special Needs:

"So Schuyler learns to pass, and I try to show her that she doesn't need to while at the same time helping her to construct this Potemkin village of outward normalcy as best as I can. It's complicated; I feel guilt when I assist her in building the mask, but I also sometimes wonder if by encouraging her to embrace her difference I'm not setting her on a path that, better or not, may very well contain more pain, more disappointment. Schuyler's own wishes are much clearer; she wants to be like everyone else. She all too frequently expresses the heartbreaking sentiment that she wants to talk like everyone else. When we do her homework or study for her tests, especially for the mainstream classes she attends, I can feel her frustration at not quite getting the things that she must be aware come so easily to her neurotypical classmates."

Sometimes We Celebrate

This morning, over at Support for Special Needs:

"Sometimes we don’t ask too many questions. Sometimes we don’t pick apart the decisions made by the people in her life, or try to look too deeply into those processes. Sometimes we don’t need to hear how a judge might make a choice based on something besides technical perfection or demonstration of proficiency, but instead on something larger, more powerful, and less subjective. We don’t need to know what moved someone to do a kind thing for Schuyler, or to try to measure the exact thing that a positive mark might be recognizing. People make fun of the “A for effort” without realizing that sometimes, the effort is the thing. It’s not the often-mocked “everyone’s a winner” approach. It’s more an acknowledgement that for some, the effort really is Herculean, and the fruits of that effort deserve accolades."

Congratulations to Schuyler, my very own Division I award-winning Valkyrie ninja marimba warrior.

The Difference

Over at The 504:

"Like most special needs parents, when I spend time with the parents of neurotypical children, I become hyperaware of the differences."

A Life's Work

Over at Support for Special Needs, I discuss what has become of me in a post that I could have called "What I Want to Be When I Grow Up", if not for the fact that I am in fact quite old.

Two things. Three, if you count the chinchilla.

Two quick orders of business today.

First of all, I want to very publicly thank Dr. Janice Light from Penn State's Department of Communication Sciences and Disorders. I had the opportunity to speak to her class this morning about Schuyler and AAC and the experience of being a parent wielding a rubber sword. One of the very best things to come out of writing my book has been the opportunity to meet and speak with the young people who are heading out into the world to make a difference, to make THE difference, in the lives of people like Schuyler. They are my heroes, and it really is an honor and a privilege to share my own small insights with them.

Secondly, I'm happy to announce that I will be contributing to the new special needs blog, The 504, over at Parenting.com. You can read my introductory post, Meet Schuyler, Monster-Slayer. (It's sort of a "Hi, this is what I'm all about" post, so it's not exactly going to be new stuff for regular readers.) I'm happy that they've started this new project, and even happier that they've invited me to be a part of it.

Okay, that's it. Oh, and here's our new chinchilla, because as you may or may not know, chinchillas are exceptionally cool. (My Instagram and Facebook feeds are mostly about chinchillas these days, in no small part because it makes me happy, imagining everyone saying "What's with all the goddamn chinchilla stuff?" I gotta be me.)

Hello, Frida.

Moments

Over at Support for Special Needs, I discuss a movie we watched over the weekend, Now is Good, and how one of the central relationships of the story, that between a terminally ill teenager and her gradually breaking father, spoke to me in a way that is no doubt familiar to most special needs fathers.

Sandcastles

Today on Support for Special Needs, I discuss the societal battles that those of us in the disability community fight over and over, even the ones we know we'll never win, as if we're building and rebuilding sandcastles that we know will be destroyed by the tide every night.

I'm not going to lie. It gets old.

"Once more unto the breach..."

Today on Support for Special Needs, thoughts on Schuyler's return to school after the break, and how that maybe feels a little different in some ways for those of us with kids with disabilities.

If you're a parent in a similar situation this week, you know I'm feeling what you're feeling. And I know that it's... complicated.