I’m not sure I’d call any of these "resolutions". But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person.
I mentioned this last year, but one of the things I value the most about a site like this one is how we can come here and be weird. We can find others whose holidays are as atypical as our own, and other families whose traditions are as driven by circumstance as ours. We know the obstacles, and we know how much work has gone in and how much is still waiting in the future. And we understand, in ways we can't describe to typical families but don't need to describe to each other, how deeply satisfying the love we work for and nurture really can be. It's a hard love, and it's the very best love.
 |
| Best wishes for the very happiest of holidays to you and to those you care about! |
 |
| When asked if she had a message for the world, Schuyler said, "Go see The Hobbit and have a happy New Year!" |
The thought of striking out against that, of hoisting a flag of defiance and breaking down some of that restricting world’s walls? That’s some powerful fantasy material for those of us trying to navigate the sweet spot between this rock and that hard place. You don’t have to ask us twice if we would like a turn at the cannonade. Our flintlocks are already loaded.
As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves.
What I truly want is for my friends to run out of hurts, to have no stories of our community being treated poorly. I want someone to say "I looked up #retard on Twitter, and nothing came up." I want to hear about the organ transplants being granted to patients with intellectual disabilities. I want to hear about how the kids on the bus were kind and the popular middle school girls gave the shy little nonverbal girl at the back of the room a makeover after school and taught her to dance to One Direction. I want to read about kids who are different writing poetry, not suicide notes. I want to read about the community that decided to invest in special education programs, and about the politicians who reach across that aisle to extend basic human rights to the disabled, rather than taking away their "entitlements".
I don't know what I was expecting, but Schuyler's brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see "werewolfism" listed.
But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it's here where the results of her increased freedom of expression and communication suddenly become clear.
It's not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn't mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it.
If Schuyler feels comfortable with even a few people in a gathering, she's a social butterfly, and an explosion of personality. But it's different when she's on her own, with no supports and no comfortable narrative to follow. For Schuyler, with communication being as fragile as it is for her, her social anxieties can feed on her in ways I probably can't imagine. She's not on the autism spectrum, nor am I to my knowledge, but in those settings, surrounded by people she doesn't really know but who come at her with a startling familiarity, a kind of sensory overload shuts her down.
Denying our kids the ability to work hard and perhaps even fail from time to time, instead just displaying them in front of an approving crowd and announcing "Look at this inclusive philosophy we've embraced!", that isn't inclusion. That's simply building a Potemkin village for the world to see and admire. It's a facade. It doesn't fool Schuyler, or any other kid whose potential is wasted because of fear of failure and a desire to do the nice thing, which is so easily confused with the right thing.
Putting Schuyler at the center of her own story isn't just polite. It's appropriate, and it's essential. She's thirteen now, and while I've certainly spoken on her behalf, or at least facilitated her communication, when she was younger, she's reaching an age where she will continue to advocate for herself more and more. I still speak for her far more often than I should, but sometimes I catch myself. Even as we endeavor to increase Schuyler's communication skills, we're working to provide her with the tools to express herself more comprehensively and training her to use those tools more efficiently and quickly. The goal is to enable her to hold her own, in any social or academic or even professional environment.
I'm sure there are a great many reasons that Schuyler loves monsters so steadfastly. Monsters are outcasts, but they aren't powerless, even when they lose. Monsters are different, in ways that are usually instantly clear. Monsters make great friends, especially if the world feels overwhelming, or unfriendly, or even dangerous. Monsters sometimes want more than to eat your city. Sometimes they want love, or at least a place in the world all their own. All of the above, and probably more. I don't think Schuyler could even tell you why she loves them so much.
 |
| Photo zazzed up by Schuyler |
 |
| Please visit I'm With Shea. |
So sometimes you just have to stop. Your all-encompassing love sustains you through the hardest times and it's recharged by successes and moments of clarity, but love isn't enough, not always. It's the most rewarding life you can undertake, and you will grow in ways you can't have imagined at the beginning, but sometimes the experience of advocating for and taking care of a special needs child feels like stepping out into a maelstrom. Every so often you have to hit pause, or you will surely be swept away.
If you are writing about an issue that affects you as a disability parent, and if that issue doesn't relate to something that is specific to the experience of being a mother, I'm not going to ask you not to address your concerns to "special needs moms" only. But I am going to ask you why you're making that choice.
Is it because in your experience, mothers are the ones doing the heavy lifting? That makes sense; the statistics certainly back you up to some extent. But if that is in fact your perspective, I have to ask you, do you like it that way? And if you don't, how do you feel about a societal narrative that feeds this perception? More to the point, how do you feel about participating in the reenforcement and perpetration of this narrative?
When I examine all the interactions in my own life, it's with my daughter that I find myself developing the closest, most authentic, most real relationship. And it's one built not so much on words, which can be difficult for her, but largely on shared experience. It's important to me that much of that experience takes place in her world, sometimes internal and sometimes very much not, and on her terms. Knowing Schuyler means loving her without expectations of adherence to a societal narrative.
Authentic human relationships. Friendships without pity and lacking power imbalance. Unconditional love, not the kind you might feel for a beloved, well-tended pet, but the kind of love built on mutual fascination. The kind that comes from real listening. This is the path to real advocacy. This is the real work, the kind where changing the world mostly involves changing ourselves.
I can remember back when it felt like we'd never be able to forget, even for a moment, what hung over her head. But time passes, Schuyler grows and becomes more adept at moving through this world, and so her reality is less front and center. Her brain is so creative and effective in its rewiring and rerouting that it's easy to forget how profoundly malformed it is, anywhere from sixty to seventy-five percent of it affected by her polymicrogyria. It's easy to fall into a place where we simply assume that this brain, broken and clouded but working with startling effectiveness, will always function with such inexplicable success. Schuyler's brain hasn't failed her yet. It hasn't experienced the kind of seizures that her doctors expected, none of the grand mal variety that were supposed to lay her low years ago. It's very easy, at least subconsciously, to confuse her current fortune with a guarantee.
For families like ours, the paths we walk aren't ones that are all that well-travelled. We don't always have that many examples of How Things Are for families of children with disabilities that are both subtle and conspicuous, and so we find ourselves searching for those paths, threading carefully, balanced between extreme possibilities.
For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn't real.
Parents of special needs kids with less visible disabilities spend a lot of time trying to moderate the effects of curiosity and casual observation. We worry that our kids will be judged unfairly by the outward manifestations of their disabilities. When our kids manage to pass unnoticed through the world, we find ourselves admitting, with varying degrees of shame, that we are proud of them for avoiding the judgment and scorn of a cold society. But it's safe to say that we do the same things ourselves. It's different for us, of course. When we identify a kid having a meltdown in public as something besides an entitled brat, we do so with empathy. But we still do it. We still play our own version of "What's going on here, exactly?"
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.
 |
| 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.
 |
| (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.
 |
| Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post. |
 |
| Photo concept by Schuyler |
