Leave the Ladders in Place

This week at Support for Special Needs:

For those of us charged with caring for and helping to build independent lives with loved ones with disabilities, trust can become hard to extend. We’ve all been burned. When we see someone like Greg Abbott build a career with the benefit of a lot of good people’s hard work, only to pull the ladder up behind him, we’re not shocked.

Of Tribes and Truths

Today at Support for Special Needs:

I watch the disability community again and again choose to address its issues by forming up into circular firing squads and shooting each other in the face with breathtaking zeal. I imagine the policy makers and the school administrators and the everyday citizens with no exposure to our lives and our worlds. I imagine them watching our infighting and our persistent dedication to choosing the low road, and instead of pondering the issues that are of importance to this community, they might simply conclude "Wow, what a bunch of assholes."

A Monster's Birthday

Today, over at Support for Special Needs:

It's been a decade since all our unanswered questions and vague fears about our daughter's developmental issues and lack of speech development coalesced into an awkward string of words -- congenital bilateral perisylvian syndrome, later renamed bilateral perisylvian polymicrogyria -- and a list of possible outcomes, all of them daunting. Ten years since our lives became altered by uncertainty and a monster sitting forever in the room, unknowable but omnipresent.

July 2003, shortly after Schuyler's diagnosis

Carousel

This morning, at Support for Special Needs:

Schuyler made a neurotypical friend her age, and that friendship will grow, if it grows, the same way her recent failed relationship grew. It'll happen by text, through the power of words that Schuyler is beginning to well and truly make her own.

Schuyler's Season

Today, at Support for Special Needs:

During the summer, Schuyler is less aware than ever of her disability, which is more than fine with me. Almost everyone she meets is a friend, not a therapist trying to measure some aspect of her skills through contrived friendship, or an evaluator trying to identify or construct phony limits to her capabilities. During the summer, Schuyler is meeting people at the pool, or at her summer baseball programs. Her new acquaintances are made to the sound of splashing and laughter and the croaking of cicadas, which we call "hot bugs" because they seem to be at their loudest when the air is thick with humidity and cartoonish heat lines wiggle up from the pavement.

Radioactive

This morning at Support for Special Needs

When I write about the importance of true and authentic relationships with people with disabilities, this is part of that. Humor like this isn't funny unless you can dehumanize your target. There's no question about whether you'll get away with it if you understand that the vast majority of people who might hear you will believe down to their core that a human being with as much worth and value as themselves has been treated unfairly. In a world where that humanity is not just acknowledged but truly and deeply felt, this kind of behavior will be relegated to the fringe of society. It's the kind of thing that should feel toxic, radioactive. It shouldn't take thought in order to recoil from it.

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.