Excerpt:
We are so convinced that we have a right to know and understand every single scenario that we see. We are offended by nuance, and confused by invisible impairment. We are the gatekeepers of entitlement (a word that is itself loaded with judgment), and if there's one thing we cannot stand, it's the idea that someone with a disadvantage somewhere is getting something that we don't think they deserve.
Excerpt:
We've always advocated strongly for Schuyler to be educated in an inclusive public school environment, even moving to our current city to make sure she'd be able to integrate using assistive technology to bridge the communication gap between her and the typical world. I have to be honest and say that her current school situation is a poor reflection of that goal. There are a lot of reasons for that. It's a complicated situation, which is usually a pretty accurate way to describe the lives of special needs families. There are goals, and there is reality, and if you're lucky they might look a little bit similar. If you're very, very lucky.
Excerpt:
If you asked me that oft-repeated but generally useless question, whether or not I'd take my daughter's disability away from her if i could, I won't lie to you. My answer now, as always, would be yes, without hesitation.
Should we want to take away our child's disabling condition? It's a hotly contested question, but it misses the point. The thing we come to learn as special needs fathers is that it doesn't actually matter how we answer. No one is ever going to ask that question as the prelude to a miracle.
We can't fix, but we can see. We can look and really see our kids, and come to understand that their disabilities are a part of their construction, threads that run deep and true in their tapestry. We become caregivers, and we become champions. We learn to fight and we learn to nurture, in ways that the fathers of typical kids might never have to do. We don't allow ourselves to become Homer Simpson because our worlds won't work with that character.
I don't think there's anything wrong with letting your kid dream past their disability. If it involves a small lie, I think it's not much different from the Santa story (SPOILER...) or the "anyone can be president" fib. (Watch Fox News for a few minutes, until your eyes begin to bleed, to see how the exception probably illustrates the rule.) Our kids are learning a great deal during their early years. That learning process involves more than finding alternate paths through the world. Kids like Schuyler are figuring out who they are, and how their disability can shape them even as they reject the idea that it should define who they are.
Many of us with special needs kids make noises of outward exasperation at the onset of summer, and we mean it, too. But at the same time, when pressed, I suspect many would admit that we're relieved, too. The schools will be giving us back our kids. Whether those schools have gotten it mostly right or mostly wrong, when we get our kids back for the summer, we leave a great deal behind. We're done, for the time being, with all the complications of negotiating school policy and modified curriculum and imperfect behavioral plans and all the modification required to make our beloved square pegs fit into those educational round holes.
For a guy who's not too smart, I think I do a reasonably good job of navigating the chaos around me. And yet, it is in respect to the most important part of my world where I think I know the least. Schuyler has always been, and remains today, the central mystery of my life. I think I made peace with that years ago, mostly because it is in the journey to understand her mystery that I've grown the most as a person, and found my closest approximation to lasting happiness. I've accepted that as lucky as I am to have Schuyler in my life, I'm mostly not going to get her.
It's beginning to occur to me that I'm not the only one.
But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.
"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be."
- Stephen Chbosky, The Perks of Being a Wallflower
There's a balance to be struck, I imagine. We don't want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our intuition to guide us.
When Schuyler was born fourteen years ago, she was (perhaps irresponsibly) placed into the hands of two people who lacked even the most basic experience with a baby. To make matters worse, at least one of those people was an idiot. (SPOILER: It was me.) I shouldn't admit how many times I looked at Schuyler and simply said to myself, "Oh my god, I have a baby and she's still alive. This is one lucky damn baby."
In Texas, our kids take the STAAR test, which replaces the TAKS test, which was probably preceded by the CRAAPS test and the BUUG test. I have no idea what STAAR stands for, and I refuse to go look. It stands for "The Test That Will Take Hours and Days of Actual Instruction Away From Your Kid, Stress Them Out In Ways You'll Probably Not Grasp Until They Go Into Therapy or Rehab or End Up on the News With Helicopters Circling Your House, and Provide Politicians With a Way to Sound Like They Care About Education But Most Assuredly Do Not."
The challenging aspects of being the parent of a special needs kid aren’t always the things you don’t know, although believe me when I say those are bad ones, like "stay up late and start drinking early" bad ones. Sometimes a greater source of parental frustration comes from truly knowing your child, in a way that is simply impossible for a doctor or a teacher or even a family member, and having to work tirelessly to be taken seriously.
This week, we didn’t struggle to understand her, we didn’t have to manage seizures, and there were no bullies to deal with. The Internet wasn’t buzzing with an unusual amount of outrage, and despair felt far away. It was a week where nothing of particular note occurred in relation to Schuyler’s disability. For families of kids with special needs, this can be a rare treat. A week without an easy blog topic is itself worthy of note.
Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is.
We're already on islands, many of us, but not in a vacation wonderland kind of a way. Our islands aren't floating in a remote blue tropical sea. They exist in plain sight, in the middle of your towns and workplaces and schools. Most of our territories are invisible; you can barely see the fences unless you look closely. And most people don't look that closely.
I’d never heard anyone come out and admit that their company had been spooked by the internal divisions of the disability community and the enthusiasm with which we seem to embrace the concept of the circular firing squad. But it was also deeply depressing to be reminded that the world is watching.
I’m writing about what I’m feeling here because I think it might be almost as common among special needs parents as that early grieving process. When we buy into a Way That Things Shall Be, it can be hard to let that Way go. Harder than even we realize, because there are so few narratives on which we may depend, and when they disappear, blown away like morning fog, there’s not much in our reserves to take their place. The Way was important, and the Way didn’t work out.
If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation.
She sees her future work life as an abstraction, probably because at her age, the future seems limitless. She believes that whatever she's going to do with her life is a choice that is firmly in her hands. But for Schuyler, and for kids like her, that future may not actually have that many options.
As parents of children with disabilities, we are constantly looking for the word choices that reflect not just our kids’ reality, but also the dignity and the hope and the possibilities that we hold as a kind of sacred trust.
But being Schuyler’s father has also shown me, again and again with stark clarity, that there really are monsters in this world, and some of them smile pretty smiles and take your daughter by the hand if you let them, and God, do I hope I’m alert enough to know those monsters when I see them.
My fears for that future, and they are legion, have little to do with what Schuyler will be able to do, or what her worth to the world might be in measurable values. My fear is rooted squarely in those who hold her future success and those of her friends in their hands, and whether or not they truly understand the value of what that means.
Special needs parents and their support professionals frequently talk about transitions. They are wildly important. It’s maybe the hardest part for a lot of our kids, and it’s the one that we know they can’t escape. The thing is, it’s the thing we can’t escape, either. Change is coming, as it always is. Sometimes stealthily as if on cat’s paws, but lately, more like a howling wind that drives everything before it.
For the parents of special needs kids who have developmental and communication impediments to independently moving through the world or reporting the troubling things that happen to them, the map of our world is crowded with monsters and terrors and fears. We’d gladly take on all the dragons and the krakens of the ancient world instead.
The thing I find sometimes is how much there is to learn in the simplified version she gives back. She doesn't take something complicated and dumb it down. Often, she distills it, tries to break it down to its most elemental parts. When she gets those parts right, it feels like a tiny triumph, not just for her but also for me. Schuyler teaches me to communicate, even as she works hard to learn those skills for herself.
What I’m doing by not saying anything is a form of silent consent. I let a little piece of verbal poison go out into the world because I don’t want to have an awkward conversation with a stranger, or worse, with a friend or family member. I hold myself up as some kind of New & Improved Rob because I don’t say it anymore, but every time it goes past me unremarked upon, all I’m really doing is allowing someone else to say it for me. I feel like that might be a little worse.
My father was to die suddenly a few years after I left, too. The aneurism in his heart burst as he stood in his yard talking to a friend; as a doctor later said, he was "dead before he hit the ground". I don't know why I always imagined a death bed scene like something from a movie, where he and I would somehow work things out before he died. What I got instead was a phone call, and a quiet six-hour drive home to Odessa, and another two-hour drive out to the remote cemetery at Paint Creek where he'd inexplicably chosen to be buried. 
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.
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| Best wishes for the very happiest of holidays to you and to those you care about! |
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| 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.
