It's when we are faced with the subtle, nonverbal communication tools of the disabled that we find ourselves challenged to learn the language of the land, and learn it quickly and without translation to ease the process. How much easier it is to simply declare communication as unattainable, and to place the blame for that failure at the feet of the disabled.
2007: Schuyler's howl of joy upon seeing the Empire State Building for the first time.
If there's anything that social media seems to do the most easily, it is to serve as a great machine, churning and huffing, with gears grinding day and night. And the product the machine produces and replicates and reproduces relentlessly is outrage. Facebook and Twitter serve as its two greatest cogs, but the Outrage Machine is complex. And god, is it efficient.
If you're a special needs parent, you've probably seen the letter by now. It's been making the rounds for a few days. It was written and delivered anonymously to a family in Newcastle, Ontario, in response to their autistic child's presence in their neighborhood. I'll link to it, sure, but I won't quote it at length. I'll give you a few words from the letter, and you can probably get the drift.
"Nuisance." "Problem." "Noise polluting." "Idiot." "Retarded." "Move away."
"Euthanize."
It's funny, the future. Sometimes it ambushes us, with a surprise diagnosis much worse than expected, or a seizure in a public place, or wicked words from a stranger. But sometimes, it unfolds exactly as it should. Exactly how you need it to.
Sometimes the What If Game cuts both ways. What if our children really could be cured, or helped to the point that their disability is all but defeated? What does that do to their sense of identity? What if it changes the essence of who they really are, in a fundamental way? What would our relationship as parents represent then? What is my responsibility? Is it to protect that basic sense of self, or to fight to open doors that may lead them to places we never dreamed of? Are those places necessarily GOOD places?
:) Next year, I am going to be cheerleader. On Monday, I am going to a camp to learn to be a cheerleader. I feel happy and nervous about meeting new people and see my friends.
I want to be a cheerleader because I want to be a leader at the school. Cheerleaders helps out lost kids and taking care of the lost kids.
Day 1: I have fun today. I met good friends and coaches. I learn moves about be a cheerleader and a leader too told me to be the best cheerleader and a good friend too. Tomorrow, I am going to that same school I went today. They were moving too fast for me and my friends too. I am going to practice at home tonight and I am going to be good for tomorrow.
Day 2: Today I had fun with my friends and my coaches too. Let's go Razorbacks, let's go! Hey hey what you saying? R M S! Purple! Silver! White!
Day 3: I had super fun and learn old and awesome moves. My squad performed with the other schools. I feel like a real cheerleader now! Yeah!
If you find those stories to be inspirational in a way that feels meaningful to you, I hope that’s the beginning of something, not the end. If you watch that story and see how much a disabled person’s life can be changed by moments of kindness and a short ride in a world that otherwise elutes them, I hope you’ll ask yourself what you might do, either in your place of business or the school your child attends or as a voter in your community, to change that rough world.
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.
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."
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.
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| July 2003, shortly after Schuyler's diagnosis |
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.
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.
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.
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.
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| (Mark Boster, Los Angeles Times) |
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."
"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."
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.
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.
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.
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.
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.
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.
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| Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post. |
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| Photo concept by Schuyler |
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.
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.
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.
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.
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.
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.
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".
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.
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| Schuyler and me, at the time of her diagnosis |
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.
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.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.
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.
