Excerpt:
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.
Excerpt:
Schuyler is never going to be a confrontational self-advocate, I feel pretty certain of that. She shies away from conflict, even as she holds the grudges that she develops as a result of it. Her own sense of justice doesn't always trump her desire to navigate her life with ease. She loves participating in marching band, for instance, even as she feels slighted by how she's treated (and more to the point, sometimes dismissed) by her band teachers from time to time. She's not interested in taking a stand, so she endures what she perceives as slights and focuses on the fun she's having. Sometimes she's a little student of Zen, in a way that I wish I could be but never am.
Excerpt:
In the list of commemorative awareness months, October's got a lot going on. It's Down Syndrome Awareness Month, after all, as well as National Dyslexia Awareness Month, National Breast Cancer Awareness Month, National ADHD Awareness Month, National Domestic Violence Awareness Month, Spina Bifida Awareness Month, and National Disability Employment Awareness Month. October kind of feels like Awareness Awareness Month, to be honest. Relevant to my own life and my own personal perspective, along with all those worthy causes, October is also AAC Awareness Month.
Excerpt:
Now that Schuyler is up to her eyeballs in high school life, marching band has become something of a sink-or-swim experience for her. This has resulted in a few stumbles, such as when she took the field at last week's football game with big floppy shoes that were not just untied but actually unlaced because she couldn't do it and, for whatever reason, she couldn't find anyone to help her while the band was getting into their uniforms. The new independent model of Schuyler 2.0 has some bugs to work out of the system, but she's getting there.
Excerpt:
Today, I have a brief message specifically for the parents of kids with special needs. It's a message that parents of typical kids probably need to hear, too, but I kind of feel like they've got supports in place, strong ones with foundations rooted deep within our social structure. Of late, I've been watching as one special needs parent after another falters, and I've seen how tenuous their supports really can be. Their supports; OUR supports. I suppose my message to them is a message to myself as well.
Excerpt:
Schuyler's voice is no longer a thing to squeak out of her iPad in close proximity. It's a thing that can travel beyond her immediate space. In some ways, Schuyler has found a way, though the simple act of handing a speaker over to a listener or placing outside of her own immediate personal space, to improve upon the natural human voice that she has been denied. And in handing that voice over to another, she creates a strange kind of intimacy, better than a shout. In a loud room, Schuyler can put her voice in your ear. I can't do that, and I find myself ever so slightly envious.
Excerpt:
Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don't discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn't eclipse Life, and the days we get with our kids shouldn't be entirely stained by our anxiety for the days we lose.
Excerpt:
I'm not usually one for writing contrived holiday-themed posts here ("It's Arbor Day, folks, and special needs families just love trees!"), but I think I'm going to make an exception for Labor Day. There are a lot of hard working people in this country, but those of us in the world of disability parenting find ourselves surrounded by the hardest working humans on the planet. For our kids, finding success in school and in the world is a lot like being an astronaut. We understand that the person standing on the moon is an extraordinary individual, and we celebrate that person's achievement. We do so, however, with the knowledge that it took a team to support those efforts and help that astronaut arrive.
Excerpt:
When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She's growing up quickly; today is her first day of high school, after all. We're having conversations identical to those happening in other houses around the world, about how it's appropriate for her to be thinking about boys she'd like to date, or girls she'd like to date, for that matter. ("Or both!" she said during our last conversation about dating; she's going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she's working on them. And the thing is, only some of those doubts stem from her disability.
Excerpt:
Schuyler understands her disability better now than she ever has before. I'm immeasurably proud of her for that. But every so often, when things are hard, she pushes back a little. She doesn't rage, she doesn't cry or fall into despair, all of which I imagine would be my own response if I were in her shoes. She simply goes on record as saying that she doesn't want it. She knows her monster doesn't require her permission to do its wicked work, but she denies it that permission anyway. I'm incredibly proud of her for that as well.
Excerpt:
Beyond mythological figures, there's the gradually disintegrating gentle lie we tell our children, the one that says that if they work hard enough or want it bad enough, they can do anything they want in the world. For kids with special needs, I suppose it's not all that different. As parents, we overbelieve, and we sell that overbelief to our kids, and that's not a bad thing, I don't think. As they grow older, like Santa, they begin to see the flaws in our lie, and as they deconstruct it bit by bit, they begin to incrementally build a more pragmatic truth in its place. They sniff out the path that does await them, the one that is meaningful and possible. As their parents, we can help, but in the end, it's not our quest. It's theirs.
Excerpt:
Schuyler started her summer band camp this morning, so I guess this is sort of the unofficial beginning of her high school years. Two weeks of 7am-to-noon rehearsals, a week of evening practices, and then ninth grade classes begin for real. I remember my own high school days, of marching band practice beginning in August, under a hot West Texas sun. It sounds miserable, and it was. It was also kind of glorious. In a weird way, I envy her, although it must be said, I also predict I'll be back in bed by 7:30.
Excerpt:
The hard part comes in trying to help Schuyler decide what to give away and what to keep. We stay out of her way, even though honestly, she's not making a lot of progress. But it's up to her to decide, not so much what's appropriate to her age, because her age gives an incomplete picture of who she is and what's appropriate for her. No, for Schuyler, it's a process of deciding what is relevant to her now, to her life at this stage. When she starts high school in the coming weeks, I suspect her choices might change.
Excerpt:
Mostly, though, the last eleven years have given me Schuyler. They've allowed me the time to let go of my selfish expectations of who I thought my daughter was going to be, and they've allowed me to adapt and appreciate and unconditionally love the weird and wonderful girl she is. It's the girl she is despite her condition, and because of it. And I'm the father I am because of the many mistakes I've made and the occasional things I've gotten right. None of us in this family are the people we were then. The past eleven years have been a crucible and a wonder. We all bear scars and the remnants of war paint, and we all shine a little brighter when called upon to do so.
Excerpt:
It really is a beautiful photo, haunting and sweet. In most of her pics, Schuyler is laughing, and not gently, either. But as she gets older and more secure in her sense of self, and as she continues to construct and deconstruct her personal sense of who she is, the Schuyler she wants the world to know is more nuanced. She's growing up, and she knows it. I think it's beginning to excite her, the knowledge that she's in control of the person she is to become.
Excerpt:
Watching Schuyler and her friend navigate their shared space was an eye-opening experience for me. I observed the ways in which they connected, and watched them dance around the ways that they simply couldn't connect. It gave me a sense of what a friendship with a neurotypical kid might look like, as well as why it has been so hard for Schuyler to make those friendships work out for long. I don't always have a very good concept of how far Schuyler really is from the developmental norm of kids her age. It's not something of which I should be so ignorant.
Excerpt:
Special education is a funny thing. (Not so much “ha ha” funny, more like “Huh, that doesn’t make a lick of sense” funny. Not actually all that funny at all, sorry.) We believe deeply in early intervention and a robust special education system in place from the very beginning, but there’s little agreement on what success actually looks like. And to those of us who live in the world of special education, there are few things that make us at best roll our eyes and at worst lay awake at night than hearing even the most well-intentioned policy-makers and elected officials talk about how they’re going to fix special education.
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.
