It's one of the dirty secrets of assistive voice technology. There are a million good reasons to use it, and the innovations advance remarkably every day. But as one noted assistive tech innovator pointed out to me as we sat in an exhibition hall full of the latest technology, "Every piece of assistive tech equipment in this room says the same thing to the casual observer. It says 'I have a disability.'"
Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
March 19, 2013
Finding Her Own Voice
Today at the 504:
March 18, 2013
A Father's Fear
Today at Support for Special Needs:
As a parent, those statistics are sobering. As a father, or at least as this father, these odds fly in the face of every protective impulse I feel, and I feel a lot of them, all the time. When Schuyler was a little girl, protecting her felt, well, not easy exactly, but it felt possible, at least. Now that she's thirteen, it seems as if the dangers to my daughter lurk in every darkened space, every hallway at her school, but most of all, those dangers hide in her own trusting and gregarious and naive nature. Schuyler understands a great deal, but she trusts very easily and is eager to meet new people, eager to a fault.
March 11, 2013
The Quiet Times
This morning, over at Support for Special Needs:
His advice to us has been more therapeutic than medical. "Let her be herself," he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it's just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it's good advice, even if it can be very difficult to take.
March 6, 2013
On the Word
As a part of today's observation of "Spread the Word to End the Word", sponsored by the Special Olympics and Best Buddies, I've written a new post over at the 504. Just revisiting some thoughts on "The R Word", from a recent speech:
In recent years, I've found myself getting caught up in exactly how unprepared the world really is for our kids, and how ugly the result can be. It's easy to forget. It's easy to become so insulated in our everyday lives as parents and so infatuated with our own beautiful children that we forget that to much of the outside world, these kids are simply perceived as being... less.
March 4, 2013
Traveling Companion
Today, at Support for Special Needs:
I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.
February 26, 2013
The Invisibility of Exceptional Children
Today, at the 504:
"Then there's the real kind of invisibility, the kind familiar to the poor or the disadvantaged. And most of all, the invisibility of disability, which manifests itself in a million different ways: the school board meeting where money is allocated to high profile programs like athletics while special education fights for inadequate resources; public discourse on special needs issues in which persons with disabilities are excluded from the discussion; conversations about persons with disabilities, in which they are spoken about as if they're an abstraction, there but somehow not there."
February 25, 2013
Autonomy is a Kind of Monster, Too
Today, at Support for Special Needs:
"Schuyler's differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she'll be okay with that for a while."
February 18, 2013
Alone on a Crowded Sea
Today, at Support for Special Needs:
"I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don't think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it's more like there are a great many little boats bobbing around in the same dark sea. And perhaps that's the best we can hope for. Tend your little boat, and find the friends with who you can tie onto for a time and help each other."
February 11, 2013
A Break from Passing
Today at Support for Special Needs:
"So Schuyler learns to pass, and I try to show her that she doesn't need to while at the same time helping her to construct this Potemkin village of outward normalcy as best as I can. It's complicated; I feel guilt when I assist her in building the mask, but I also sometimes wonder if by encouraging her to embrace her difference I'm not setting her on a path that, better or not, may very well contain more pain, more disappointment. Schuyler's own wishes are much clearer; she wants to be like everyone else. She all too frequently expresses the heartbreaking sentiment that she wants to talk like everyone else. When we do her homework or study for her tests, especially for the mainstream classes she attends, I can feel her frustration at not quite getting the things that she must be aware come so easily to her neurotypical classmates."
February 4, 2013
Sometimes We Celebrate
This morning, over at Support for Special Needs:
"Sometimes we don’t ask too many questions. Sometimes we don’t pick apart the decisions made by the people in her life, or try to look too deeply into those processes. Sometimes we don’t need to hear how a judge might make a choice based on something besides technical perfection or demonstration of proficiency, but instead on something larger, more powerful, and less subjective. We don’t need to know what moved someone to do a kind thing for Schuyler, or to try to measure the exact thing that a positive mark might be recognizing. People make fun of the “A for effort” without realizing that sometimes, the effort is the thing. It’s not the often-mocked “everyone’s a winner” approach. It’s more an acknowledgement that for some, the effort really is Herculean, and the fruits of that effort deserve accolades."
Congratulations to Schuyler, my very own Division I award-winning Valkyrie ninja marimba warrior. |
February 2, 2013
The Difference
Over at The 504:
"Like most special needs parents, when I spend time with the parents of neurotypical children, I become hyperaware of the differences."
January 28, 2013
A Life's Work
Over at Support for Special Needs, I discuss what has become of me in a post that I could have called "What I Want to Be When I Grow Up", if not for the fact that I am in fact quite old.
January 24, 2013
Two things. Three, if you count the chinchilla.
Two quick orders of business today.
First of all, I want to very publicly thank Dr. Janice Light from Penn State's Department of Communication Sciences and Disorders. I had the opportunity to speak to her class this morning about Schuyler and AAC and the experience of being a parent wielding a rubber sword. One of the very best things to come out of writing my book has been the opportunity to meet and speak with the young people who are heading out into the world to make a difference, to make THE difference, in the lives of people like Schuyler. They are my heroes, and it really is an honor and a privilege to share my own small insights with them.
Secondly, I'm happy to announce that I will be contributing to the new special needs blog, The 504, over at Parenting.com. You can read my introductory post, Meet Schuyler, Monster-Slayer. (It's sort of a "Hi, this is what I'm all about" post, so it's not exactly going to be new stuff for regular readers.) I'm happy that they've started this new project, and even happier that they've invited me to be a part of it.
Okay, that's it. Oh, and here's our new chinchilla, because as you may or may not know, chinchillas are exceptionally cool. (My Instagram and Facebook feeds are mostly about chinchillas these days, in no small part because it makes me happy, imagining everyone saying "What's with all the goddamn chinchilla stuff?" I gotta be me.)
First of all, I want to very publicly thank Dr. Janice Light from Penn State's Department of Communication Sciences and Disorders. I had the opportunity to speak to her class this morning about Schuyler and AAC and the experience of being a parent wielding a rubber sword. One of the very best things to come out of writing my book has been the opportunity to meet and speak with the young people who are heading out into the world to make a difference, to make THE difference, in the lives of people like Schuyler. They are my heroes, and it really is an honor and a privilege to share my own small insights with them.
Secondly, I'm happy to announce that I will be contributing to the new special needs blog, The 504, over at Parenting.com. You can read my introductory post, Meet Schuyler, Monster-Slayer. (It's sort of a "Hi, this is what I'm all about" post, so it's not exactly going to be new stuff for regular readers.) I'm happy that they've started this new project, and even happier that they've invited me to be a part of it.
Okay, that's it. Oh, and here's our new chinchilla, because as you may or may not know, chinchillas are exceptionally cool. (My Instagram and Facebook feeds are mostly about chinchillas these days, in no small part because it makes me happy, imagining everyone saying "What's with all the goddamn chinchilla stuff?" I gotta be me.)
Hello, Frida. |
January 21, 2013
Moments
Over at Support for Special Needs, I discuss a movie we watched over the weekend, Now is Good, and how one of the central relationships of the story, that between a terminally ill teenager and her gradually breaking father, spoke to me in a way that is no doubt familiar to most special needs fathers.
January 14, 2013
Sandcastles
Today on Support for Special Needs, I discuss the societal battles that those of us in the disability community fight over and over, even the ones we know we'll never win, as if we're building and rebuilding sandcastles that we know will be destroyed by the tide every night.
I'm not going to lie. It gets old.
I'm not going to lie. It gets old.
January 7, 2013
"Once more unto the breach..."
Today on Support for Special Needs, thoughts on Schuyler's return to school after the break, and how that maybe feels a little different in some ways for those of us with kids with disabilities.
If you're a parent in a similar situation this week, you know I'm feeling what you're feeling. And I know that it's... complicated.
If you're a parent in a similar situation this week, you know I'm feeling what you're feeling. And I know that it's... complicated.
December 31, 2012
Forward
Today at Support for Special Needs, I discuss the passing from the old year to the new, and what that means for families like ours. This being New Year's Eve and all, I can't imagine that's a surprise topic. I don't know, an Arbor Day post didn't seem appropriate.
To everyone reading me, wherever you are, I hope you have a wonderful 2013. See you there!
To everyone reading me, wherever you are, I hope you have a wonderful 2013. See you there!
December 24, 2012
Christmas Eve on the Island of Misfit Toys
Today at Support for Special Needs, a few words on Christmas Eve.
I hope everyone reading this has a safe and joyous and transformative holiday week. If you're a friend, I hope you remain so forever. If you're a reader, I hope you continue to find value in my work. And if you're an... other, well, I don't know. I hope your heart grows three sizes this day, I guess.
No matter who you are, I wish you peace and happiness.
I hope everyone reading this has a safe and joyous and transformative holiday week. If you're a friend, I hope you remain so forever. If you're a reader, I hope you continue to find value in my work. And if you're an... other, well, I don't know. I hope your heart grows three sizes this day, I guess.
No matter who you are, I wish you peace and happiness.
December 21, 2012
"Such a light such dark did span..."
The other day, for a post honoring the victims of the Newtown shooting, I quoted some lines by an anonymous poet, one that I knew from a magnificent piece of Christmas music, Hodie by Ralph Vaughan Williams. The poem comes from a heartachingly beautiful chorus near the end, and when I went back and listened to it, I realized that I kind of wanted to quote the second verse, too.
I've written about how the holidays can be complicated for an agnostic family living in an overwhelmingly Christian society; I feel I write about it every year, actually. Not just for the obvious reasons, but also for the pangs of envy that come from watching others receive comfort and warmth from something that has meaning to them. I don't imagine the Rummel-Hudsons will ever become Christians, and certainly not just so we'll have a nicer time at Christmas. The challenge for us comes from searching for meaning in the world that we DO believe in, a world based not on the divinity of Christ and the community of believers, but on other things, smaller things, perhaps. Sometimes as small as a child.
Even for a non-Christian, there is still something powerful about the image of a newborn child during the holidays. It sounds treacly, bordering on cliché, but children really are promise, and in believing in the promise of a child, we find ourselves renewed. For me, from the shabby, sometimes wrecked perspective of middle age, that sense of renewal becomes especially important. When I went back and listened to the music that inspired that quote, I found myself catching my breath at the line declaring that this promise and this joy would break the chains of evil from mankind. The text is referencing the birth of a particular child, of course. And yet, it's important to remember, always remember, that no matter how happy and bright and shining our Christmas celebrations may aspire to be, there's always the end of that story to look forward to. In every Christmas, there is some Easter waiting.
In our simple joy, there is bittersweet sacrifice waiting.
This season feels different from holidays past. It seems harder somehow. In a larger sense, there's no mystery why, and I suspect that there are a great many homes feeling this. Newtown has darkened the holidays in a way that's not easily shaken off. It's too big; no amount of merry thoughts can dispel the mental images we've been trying to push out of our heads, or the heartbreak we've felt, over and over, unrelenting, as we meet the families and learn more about those who have been lost to us. How do we break those chains?
Even so, in the months before Newtown, the world had felt grey to me. The internet had seemed meaner, the real world conversations more terse. And Schuyler was facing the same things on a younger but hardly smaller scale, from girls her age who had already discovered the easy thrill of ostracization. She did so while stubbornly fighting her own unwinnable battle, the one where she believed that if she just tried hard enough, no one would care about her disability or even notice it. Before the world darkened at Newtown, it was already feeling like a stonier place than before.
I wish I had a "But then..." to go to, where I could share something that changed that, made it all better somehow, but I don't. I can only say that I haven't stopped looking for the light. I guess I feel I owe it to her not to miss it if it's there. My agnosticism is nothing like atheism. I haven't closed myself off to the promise latent in this universe to surprise or to elevate.
I don't believe in a holy Christ child, but I do believe in the possibilities of our young ones. I don't believe that Jesus will bring us salvation, but I haven't ruled out the possibility that we might be saved just the same.
No sad thought his soul affright;
Sleep it is that maketh night;
Let no murmur nor rude wind
To his slumbers prove unkind;
But a quire of angels make
His dreams of heaven, and let him wake
To as many joys as can
In this world befall a man.
Promise fills the sky with light,
Stars and angels dance in flight;
Joy of heaven shall now unbind
Chains of evil from mankind,
Love and joy their power shall break,
And for a new born prince’s sake;
Never since the world began
Such a light such dark did span.
I've written about how the holidays can be complicated for an agnostic family living in an overwhelmingly Christian society; I feel I write about it every year, actually. Not just for the obvious reasons, but also for the pangs of envy that come from watching others receive comfort and warmth from something that has meaning to them. I don't imagine the Rummel-Hudsons will ever become Christians, and certainly not just so we'll have a nicer time at Christmas. The challenge for us comes from searching for meaning in the world that we DO believe in, a world based not on the divinity of Christ and the community of believers, but on other things, smaller things, perhaps. Sometimes as small as a child.
Even for a non-Christian, there is still something powerful about the image of a newborn child during the holidays. It sounds treacly, bordering on cliché, but children really are promise, and in believing in the promise of a child, we find ourselves renewed. For me, from the shabby, sometimes wrecked perspective of middle age, that sense of renewal becomes especially important. When I went back and listened to the music that inspired that quote, I found myself catching my breath at the line declaring that this promise and this joy would break the chains of evil from mankind. The text is referencing the birth of a particular child, of course. And yet, it's important to remember, always remember, that no matter how happy and bright and shining our Christmas celebrations may aspire to be, there's always the end of that story to look forward to. In every Christmas, there is some Easter waiting.
In our simple joy, there is bittersweet sacrifice waiting.
This season feels different from holidays past. It seems harder somehow. In a larger sense, there's no mystery why, and I suspect that there are a great many homes feeling this. Newtown has darkened the holidays in a way that's not easily shaken off. It's too big; no amount of merry thoughts can dispel the mental images we've been trying to push out of our heads, or the heartbreak we've felt, over and over, unrelenting, as we meet the families and learn more about those who have been lost to us. How do we break those chains?
Even so, in the months before Newtown, the world had felt grey to me. The internet had seemed meaner, the real world conversations more terse. And Schuyler was facing the same things on a younger but hardly smaller scale, from girls her age who had already discovered the easy thrill of ostracization. She did so while stubbornly fighting her own unwinnable battle, the one where she believed that if she just tried hard enough, no one would care about her disability or even notice it. Before the world darkened at Newtown, it was already feeling like a stonier place than before.
I wish I had a "But then..." to go to, where I could share something that changed that, made it all better somehow, but I don't. I can only say that I haven't stopped looking for the light. I guess I feel I owe it to her not to miss it if it's there. My agnosticism is nothing like atheism. I haven't closed myself off to the promise latent in this universe to surprise or to elevate.
I don't believe in a holy Christ child, but I do believe in the possibilities of our young ones. I don't believe that Jesus will bring us salvation, but I haven't ruled out the possibility that we might be saved just the same.
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