If you're a big baby about SPOILERS, even in a kid's movie like Wreck It Ralph, two things:
First of all, this post is, by necessity, one big spoiler, so consider yourself warned.
Secondly, get a grip.
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| Photo credit: Disney |
November 5, 2012
Glitch
Today at Support for Special Needs, we meet Vanellope von Schweetz, a character from the new Disney animated feature Wreck It Ralph and the most recent fictional character with whom Schuyler found herself strongly identifying. Vanellope joins the club along with Ariel the mermaid, Nemo, Tinker Bell, Pinocchio, and Scout Finch (or perhaps Boo Radley, if we're really being honest here).
If you're a big baby about SPOILERS, even in a kid's movie like Wreck It Ralph, two things:
First of all, this post is, by necessity, one big spoiler, so consider yourself warned.
Secondly, get a grip.
If you're a big baby about SPOILERS, even in a kid's movie like Wreck It Ralph, two things:
First of all, this post is, by necessity, one big spoiler, so consider yourself warned.
Secondly, get a grip.
October 31, 2012
Ride of the Valkyrie
Halloween is Schuyler's favorite holiday. It's probably mine, too, even though I rarely dress up. (The infamous Year of the Chicken notwithstanding.) It's my favorite entirely because of the happiness it brings her. That may change as she gets older and becomes more aware of her otherness, and as she ages out of things like trick or treating. For now, we cling to Halloween, and look for ways to make it stay hers.
I can't say for certain why Schuyler loves Halloween so much. Probably for the obvious reasons. Free candy, running around with her oldest friend being weird in the street, staying up late, playing dress up, etc. I wonder sometimes if there's more to it, to the fact that on Halloween, Schuyler's weird disappears a little. When she becomes someone else, she lets go of who she is, of the circumstances in which she finds herself, even if just for a night.
Once she was old enough to choose her own costume, and after a few years of perhaps predictable fairy choices, Schuyler seems to have gravitated toward strong female characters, which of course makes me happy. The best was easily Amelia Earhart a few years ago, which she wore to the Texas Book Festival because my fancy pants authorness stepped all over her childhood. (Sorry.) And last year we had Medusa, of course.
This year, she had her big idea while we were watching the Met's production of Wagner's The Ring of the Nibelungen, because yes, I have somehow raised a little opera nerd. (Don't worry, she still balances it out with Lady Gaga and the like.) So this year, I give you Brunhilde, the most badass of the Valkyries.
(Unseen in the photo: the hidden pouch for her iPod and its "Brunhilde Mix", consisting of lots of Wagner and the audio from the Warner Bros. "What's Opera, Doc?" cartoon.)
I can't say for certain why Schuyler loves Halloween so much. Probably for the obvious reasons. Free candy, running around with her oldest friend being weird in the street, staying up late, playing dress up, etc. I wonder sometimes if there's more to it, to the fact that on Halloween, Schuyler's weird disappears a little. When she becomes someone else, she lets go of who she is, of the circumstances in which she finds herself, even if just for a night.
Once she was old enough to choose her own costume, and after a few years of perhaps predictable fairy choices, Schuyler seems to have gravitated toward strong female characters, which of course makes me happy. The best was easily Amelia Earhart a few years ago, which she wore to the Texas Book Festival because my fancy pants authorness stepped all over her childhood. (Sorry.) And last year we had Medusa, of course.
This year, she had her big idea while we were watching the Met's production of Wagner's The Ring of the Nibelungen, because yes, I have somehow raised a little opera nerd. (Don't worry, she still balances it out with Lady Gaga and the like.) So this year, I give you Brunhilde, the most badass of the Valkyries.
(Unseen in the photo: the hidden pouch for her iPod and its "Brunhilde Mix", consisting of lots of Wagner and the audio from the Warner Bros. "What's Opera, Doc?" cartoon.)
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| "Oh Bwunhilde, you're so wove-wy..." |
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| "Yes, I know it. I can't help it." |
October 29, 2012
"I don't know."
In today's post at Support for Special Needs, I discuss Schuyler's frustration with her disability, a frustration for which she has no words, for which she has an incomplete understanding but a visceral need to express nonetheless.
As Schuyler gets older, she finds herself in greater need of the words, and the concepts behind them, to express how very very much she hates her monster, and the unfairness that it brings to her life.
When she was younger, Schuyler said it with a howl. She needs a new howl now, and she's working to find it.
As Schuyler gets older, she finds herself in greater need of the words, and the concepts behind them, to express how very very much she hates her monster, and the unfairness that it brings to her life.
When she was younger, Schuyler said it with a howl. She needs a new howl now, and she's working to find it.
October 23, 2012
Just a Word: Election Edition
It's election season in the United States. This is a very special time for the people of this country, an opportunity to come together to soberly and with much reflection choose the fellow citizens in whom we trust to lead our nation into an uncertain future.
It's a time to explore our differences, of course, but also to celebrate the process of peaceful transition, of the theory of democracy made real. In this season, it is possible to experience the essence of American citizenship and the dignity and majesty of our system of government, based as it is on the strength and goodness of community.
In that spirit of civil discourse, I give you the post-debate words of author, pundit and self-proclaimed patriot Ann Coulter.
Having gotten everyone's attention, she later doubled down. (Beautifully, she did so as a way of calling out the president for insensitivity.)
Charming.
Look. I've written about this in the past, about how some people use this word because they are ignorant, and others because it's good for an easy laugh. And I have never ever said that no one has the right to use it. I've never advocated banning a word, even if that was even possible. In a way, I'd almost rather prefer that the people who want to use it actually do so. It's a quick identifier, a kind of vocabulary profiling, a little red flag that tells me a lot about the person before I invest a great deal of time taking them seriously.
Also, as I've made clear before, I have been extremely guilty of using that word in the past. I didn't necessarily get smarter since then, but through my own life experience and through the extraordinary people I've met as a result of advocating for Schuyler, I think I might have become a little wiser. Certainly more sensitive, although like most people, I have a long way to go. Still, I freely acknowledge that when it comes to speaking out against using the "R word", I am very much Nixon going to China.
Where Ann Coulter is concerned, the first thing we must do is take ignorance off the table. As noted in a post on Sprocket Ink, Coulter graduated cum laude from Cornell with a B.A. in history, and received her J.D. from the University of Michigan Law School, where she edited the Michigan Law Review.
When she uses this word to insult the president and liberals, Ann Coulter is making a choice. It's a very calculated choice, too. She knows that people will be upset by her language, but more importantly, she knows exactly WHO will be upset. When contacted about her use of the so-called "R word" in her tweet yesterday, Coulter replied, "The only people who will be offended are too retarded to understand it."
Ann Coulter knows who will be upset, and she knows who will be thrilled. I've worked in a book store; I have a pretty good idea of the people who buy her books. Either way, she's playing to her audience.
And like every other public figure who has used this term loudly and proudly, Ann Coulter has spared not a single thought for those whom she hurts. People like my daughter aren't on her scope. People like my family don't matter. Human beings with developmental disabilities have so very little political power, and fight so hard for what scraps they have. Are they even human beings at all? Don't ask Ann Coulter.
For those with developmental disabilities who can stand up for themselves, and for those of us who care for and love and most of all strive to protect and build a better world for those whom the likes of Ann Coulter would reduce to a vicious punchline, the fight falls at our feet. Not to stop people like Coulter from expressing their opinions. Not to silence them. As I said, if anything, I prefer that they stand in the light when they make these statements. Given the choice of knowing that there are roaches skittering around my kitchen at night (note: I'm being metaphorical; we don't have roaches, knock on wood) or turning on the light, I'll reach for the light every time. Even if some of the roaches, like Coulter, crave that light.
If Liberals excuse her remarks because we think she's a buffoon who is clearly desperate for attention, we become complicit. If Conservatives distance themselves from her and say "Well, she doesn't speak for me, so I have no duty to rebuke her," they are also complicit, because it's not a political issue. It might be a little different if she were abusing communities with any power or any privilege, groups that could push back.
But Coulter knows that the disability community is a safe target. No, scratch that. Not even a target. Just a punchline. A target would imply that there was some political gain to be had in hurting people like my daughter, like her friends and her family and her community.
As it is, there's not even that. They're just retards, right?
Right?
As citizens of the world and children of God, we have a choice to make, and it needs to be every bit as deliberate and considered as Coulter's choice to use that word the way she does. We have a choice to make every time we read a comment like hers made by a public figure, of course. Whether it's a notable Republican like Ann Coulter or a Democrat like Chicago Mayor Rahm Emanuel, we have to hold them accountable.
But more than that, we have a choice to make every time we hear a stranger at the mall use it, or a friend, a family member or a coworker. It is in those moments most of all that we make choices, sometimes hard ones. When we choose silence, when we choose not to make waves or risk looking like humorless scolds, we make a choice. We choose the side of the Ann Coulters of the world.
We choose the dark. When we're silent in opposition, we choose the dark, and we do so knowing perfectly well that we have a flashlight in our pocket, and we choose not to use it.
I remember a line from that famous Howard Beale scene from Network:
I guess what I'm trying to say is yeah, I'm as mad as hell. And I'm not going to take this anymore. And neither should you.
It's a time to explore our differences, of course, but also to celebrate the process of peaceful transition, of the theory of democracy made real. In this season, it is possible to experience the essence of American citizenship and the dignity and majesty of our system of government, based as it is on the strength and goodness of community.
In that spirit of civil discourse, I give you the post-debate words of author, pundit and self-proclaimed patriot Ann Coulter.
I highly approve of Romney's decision to be kind and gentle to the retard.
— Ann Coulter (@AnnCoulter) October 23, 2012
Having gotten everyone's attention, she later doubled down. (Beautifully, she did so as a way of calling out the president for insensitivity.)
Obama: "Stage 3 Romneysia" - because cancer references are HILARIOUS.If he's "the smartest guy in the room" it must be one retarded room.
— Ann Coulter (@AnnCoulter) October 23, 2012
Charming.
Also, as I've made clear before, I have been extremely guilty of using that word in the past. I didn't necessarily get smarter since then, but through my own life experience and through the extraordinary people I've met as a result of advocating for Schuyler, I think I might have become a little wiser. Certainly more sensitive, although like most people, I have a long way to go. Still, I freely acknowledge that when it comes to speaking out against using the "R word", I am very much Nixon going to China.
Where Ann Coulter is concerned, the first thing we must do is take ignorance off the table. As noted in a post on Sprocket Ink, Coulter graduated cum laude from Cornell with a B.A. in history, and received her J.D. from the University of Michigan Law School, where she edited the Michigan Law Review.
When she uses this word to insult the president and liberals, Ann Coulter is making a choice. It's a very calculated choice, too. She knows that people will be upset by her language, but more importantly, she knows exactly WHO will be upset. When contacted about her use of the so-called "R word" in her tweet yesterday, Coulter replied, "The only people who will be offended are too retarded to understand it."
Ann Coulter knows who will be upset, and she knows who will be thrilled. I've worked in a book store; I have a pretty good idea of the people who buy her books. Either way, she's playing to her audience.
And like every other public figure who has used this term loudly and proudly, Ann Coulter has spared not a single thought for those whom she hurts. People like my daughter aren't on her scope. People like my family don't matter. Human beings with developmental disabilities have so very little political power, and fight so hard for what scraps they have. Are they even human beings at all? Don't ask Ann Coulter.
For those with developmental disabilities who can stand up for themselves, and for those of us who care for and love and most of all strive to protect and build a better world for those whom the likes of Ann Coulter would reduce to a vicious punchline, the fight falls at our feet. Not to stop people like Coulter from expressing their opinions. Not to silence them. As I said, if anything, I prefer that they stand in the light when they make these statements. Given the choice of knowing that there are roaches skittering around my kitchen at night (note: I'm being metaphorical; we don't have roaches, knock on wood) or turning on the light, I'll reach for the light every time. Even if some of the roaches, like Coulter, crave that light.
If Liberals excuse her remarks because we think she's a buffoon who is clearly desperate for attention, we become complicit. If Conservatives distance themselves from her and say "Well, she doesn't speak for me, so I have no duty to rebuke her," they are also complicit, because it's not a political issue. It might be a little different if she were abusing communities with any power or any privilege, groups that could push back.
But Coulter knows that the disability community is a safe target. No, scratch that. Not even a target. Just a punchline. A target would imply that there was some political gain to be had in hurting people like my daughter, like her friends and her family and her community.
As it is, there's not even that. They're just retards, right?
Right?
As citizens of the world and children of God, we have a choice to make, and it needs to be every bit as deliberate and considered as Coulter's choice to use that word the way she does. We have a choice to make every time we read a comment like hers made by a public figure, of course. Whether it's a notable Republican like Ann Coulter or a Democrat like Chicago Mayor Rahm Emanuel, we have to hold them accountable.
But more than that, we have a choice to make every time we hear a stranger at the mall use it, or a friend, a family member or a coworker. It is in those moments most of all that we make choices, sometimes hard ones. When we choose silence, when we choose not to make waves or risk looking like humorless scolds, we make a choice. We choose the side of the Ann Coulters of the world.
We choose the dark. When we're silent in opposition, we choose the dark, and we do so knowing perfectly well that we have a flashlight in our pocket, and we choose not to use it.
I remember a line from that famous Howard Beale scene from Network:
"All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"
I guess what I'm trying to say is yeah, I'm as mad as hell. And I'm not going to take this anymore. And neither should you.
October 22, 2012
Watching
Today's post at Support for Special Needs confronts an issue born out of Schuyler's newfound communications independence.
We have the opportunity to invade our daughter's privacy electronically. We feel weird and wrong doing it. And we do it anyway.
I don't feel particularly right on this particular issue. I might even feel mostly wrong. But I also feel bound to continue making what feels much like the wrong choice, yet also the clear one.
October 15, 2012
Resolution
Today's post over at Support for Special Needs is a short one, just a brief followup (and hopefully a resolution) to the ongoing legal tussle between Speak for Yourself and the Prentke Romich Company. Here's hoping this is the very last time I'll ever write about this ever. Dream a little dream.
October 8, 2012
Portrait of a Real Girl
My latest post at Support for Special Needs discusses a little exchange I had on Twitter last week, ostensibly about Schuyler's school photo. The conversation was a doozy, and mostly ended in kookery, which is hardly a surprise at this point.
Still, it brought up a larger point, about how kids like Schuyler are typically a lot more complex and self-determined than some people give them credit for. They are, dare I say it, actual people?
Still, it brought up a larger point, about how kids like Schuyler are typically a lot more complex and self-determined than some people give them credit for. They are, dare I say it, actual people?
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| NOTE: This is NOT her school photo. Which is kind of too bad. |
October 1, 2012
Sometimes He Does
There's a saying that special needs parents hear a lot, rivaling the Holland Thing for frequency of appearance in our inbox. "God never gives you more than you can handle."
But through experience and observation of our families and others like them, we know better. Sometimes he does.
September 21, 2012
This Isn't a Little Girl
I've read a lot about Schuyler lately. Most of it is appreciated, some of it has been dead wrong, and a little of it has been unspeakably cruel. A lot of strangers who will never meet her have said the most amazing things on her behalf, and some people who claim to care about her have led the devil straight to her doorway. This is all the result of the attention I've brought to her, and by and large, this mostly encouraging attention has been for the positive. I confess that when I think about the public scrutiny I've brought to Schuyler's life, I stay up late some nights wondering if I've done right by her. But I still somehow manage to get some sleep.
Much like myself, I suppose, it's safe to say that neither the best nor the worst that has been said about Schuyler is accurate. Schuyler isn't an angel, nor is she a pathetic misfit. She's a developing human in transition. Lately I've been more and more aware that she's leaving her little girl life behind, to be replaced soon (if it hasn't begun already) by her time in this world as a young woman. In three months, she'll become a teenager. Many of the storms that await her are driven by her disability, but some of them will simply be a result of being a teenager, in a world where teenagers strive to be anything but different, even as they struggle to find their unique place in the world.
Today we had lunch with Schuyler, at her school. She's still struggling to find her place in her seventh grade tribe, although she's made some small steps in the right direction. For now, we go to her every Friday, to her mysterious delight. (Because seriously, if my parents had ever shown up at my school to eat lunch with me, I might have ended my life with the school-provided plastic cutlery.) We bring her a burrito bowl from Chipotle, along with one for her SpEd teacher, and for half an hour we live in her world.
As she sat and looked around, finding boys to tell us about, I took out my phone and snapped a few photos. It wasn't until later that I looked at them and realized that my phone has a feature I was unaware of. It apparently has a time machine app that allows me to glimpse into the future.
Because this isn't a little girl. This is a young woman, and a father's heartbreak.
Much like myself, I suppose, it's safe to say that neither the best nor the worst that has been said about Schuyler is accurate. Schuyler isn't an angel, nor is she a pathetic misfit. She's a developing human in transition. Lately I've been more and more aware that she's leaving her little girl life behind, to be replaced soon (if it hasn't begun already) by her time in this world as a young woman. In three months, she'll become a teenager. Many of the storms that await her are driven by her disability, but some of them will simply be a result of being a teenager, in a world where teenagers strive to be anything but different, even as they struggle to find their unique place in the world.
Today we had lunch with Schuyler, at her school. She's still struggling to find her place in her seventh grade tribe, although she's made some small steps in the right direction. For now, we go to her every Friday, to her mysterious delight. (Because seriously, if my parents had ever shown up at my school to eat lunch with me, I might have ended my life with the school-provided plastic cutlery.) We bring her a burrito bowl from Chipotle, along with one for her SpEd teacher, and for half an hour we live in her world.
As she sat and looked around, finding boys to tell us about, I took out my phone and snapped a few photos. It wasn't until later that I looked at them and realized that my phone has a feature I was unaware of. It apparently has a time machine app that allows me to glimpse into the future.
Because this isn't a little girl. This is a young woman, and a father's heartbreak.
September 17, 2012
Possibilities
Over at Support for Special Needs, I talk about a very interesting idea that was floated to us by one of Schuyler's teachers. It was honestly not one that would have occurred to either of us, not in a thousand years.
And yet, it might not be the most terrible idea ever. Perhaps.
And yet, it might not be the most terrible idea ever. Perhaps.
September 10, 2012
They Walk Among Us!
Today's post at Support for Special Needs continues last week's Bigfoot/Yeti/Nessie theme (well, it was a theme in my head, anyway) as we explore the mythological creature commonly known, when he's known at all, as the Special Needs Dad.
I started off with a point, but really, by the end I was just sort of cracking myself up like an idiot. You might or might not be surprised at just how often that occurs in my life.
September 4, 2012
Words for Life
Today over at Support for Special Needs, I discuss what is essentially the AAC equivalent of the capture of Bigfoot AND the Yeti riding on the Loch Ness Monster. Yes, friends, PRC has released its Unity language system for the iPad. My early thoughts on this new app, the one we never thought we'd see.
A quick personal note: we are putting our plans for Chicago in a holding pattern for the time being. Note that I said a holding pattern. We're circling the airport patiently, not crashing into the side of a mountain. Assmonkeys and their sock puppets will chatter regardless. Well, what are you gonna' do?
A quick personal note: we are putting our plans for Chicago in a holding pattern for the time being. Note that I said a holding pattern. We're circling the airport patiently, not crashing into the side of a mountain. Assmonkeys and their sock puppets will chatter regardless. Well, what are you gonna' do?
August 27, 2012
The Return of the Short Bus
I've posted over at Support for Special Needs, about Schuyler's return to school. It's tricky because she may very well be changing schools in about two months, which obviously brings its own concerns. But for now, she's back, and while she has misgivings, she nonetheless leapt onto the bus this morning without hesitation, and without so much as a glance back.
I mean, a little separation anxiety wouldn't kill her, would it? Harsh, Schuyler. Very harsh.
I mean, a little separation anxiety wouldn't kill her, would it? Harsh, Schuyler. Very harsh.
August 20, 2012
One Week
It's Monday, and that must mean a new post over at Support for Special Needs. This is Schuyler's last week at home for the summer, before heading back to school. Well. I'll miss this time with her, as I do every fall.
August 14, 2012
Giving
There's a new post up at Support for Special Needs, a day late and perhaps a dollar short. You can judge that for yourself. The topic is what I can give to Schuyler. And what I can't.
August 9, 2012
deleted
If you think it's entertaining to say disgusting things (in anonymous email, of course) about people you don't actually know, I hope you'll consider limiting your targets to adults.
Post deleted. JHFC...
Post deleted. JHFC...
August 8, 2012
Just a Word: From the Mouths of our Public Servants Edition
I didn't want to write about this today. I didn't want to write about it at all, actually, but certainly not today. I've got another post coming up tomorrow that I most certainly do not want parked next to this delightful topic. And honestly, I'm tired of talking about it, this thing that doesn't seem to ever change, or ever get better.
But then, I'm not the person who thought it would be funny to use kids like mine as the punchline to a horrible joke, all in service of scoring political points and mocking the President of the United States.
Allegheny, PA County GOP chair Jim Roddey, at the election night party for state Rep. Randy Vulakovich, R-Shaler:
"There was a disappointment tonight. I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly -- he looked like he was sort of in distress. And I said, 'Sir, here's a place.' And he said, 'That's a handicapped space.' I said, 'Oh I'm so sorry, I saw that Obama sticker and I thought you were mentally retarded."
Well. There you go.
(I'll no doubt be able to add an update later, with a weaselly statement from Mr. Roddey's spokesperson expressing regret or possibly outrage that his words were taken out of context by the liberal media, and how he does love the little retards of the world so very much. I'll be sure to share it when it comes.)
This isn't about politics; it's just as reprehensible when the sentiment comes out of the mouths of people whose politics align more closely with my own. And this time, it isn't about a slip of the tongue, a casual careless remark, or a moment of poor judgment.
This was a joke. A premeditated joke, one that Jim Roddey planned to make. For all I know, it was written down on a little blue notecard for him. It's even possible that it was written for him, by one of his staff. Jim Roddey stood up, he took the microphone, and he very deliberately and unhesitatingly made a joke, one that I like to think that just about any decent human being would find repulsive.
But that's perhaps the worst part.
From the article: "The crowd hollered and clapped, and then Roddey went into the the usual thanks at political events for grassroots supporters of the winning candidate."
Not one person stood up and called him out on it. Not one person felt compelled to be a voice for basic humanity, for a bare minimal level of human decency. Gathered in a mob, the crowd roared its approval. It cheered and it laughed, and it demonstrated once again that those of us who love and advocate for friends and family with developmental disabilities have a lot of work to do.
And all our work? It might just be for nothing.
I wonder if Jim Roddey and his audience would have laughed if my child had been standing there in front of them. Or Sarah Palin's.
Or yours.
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INEVITABLE UPDATE, 8/8: Jim Roddey has apologized for his joke.
"I have a long record of supporting people with disabilities and should have remembered that before I spoke. My remarks were inappropriate and I apologize."See? It's not that he doesn't care about people with developmental disabilities. It's simply that he forgot that he cares. Silly!
Apparently the members of the Allegheny County GOP forgot not to laugh, too.
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| Jim Roddey, Pennsylvania’s Allegheny County GOP Chair and swell guy. info@rcac.net Telephone: 412-458-0068 (Mr. Roddey's phone: 412-512-6747) The Republican Committee of Allegheny County 100 Fleet Street, Suite 205 Pittsburgh, PA 15220 |
August 6, 2012
Letting go. Just a little.
I wrote about the challenge of trying to grant Schuyler a measure of independence over at Support for Special Needs this morning. I'm not all that good at letting go, but I do try.
Keep an eye out here for a special announcement in a few days, if all goes well. If you think you know what I'm going to tell you, the only thing I think I can say for sure is that you're wrong. I believe this might just be a near-universal surprise. And a complicated one at that.
Keep an eye out here for a special announcement in a few days, if all goes well. If you think you know what I'm going to tell you, the only thing I think I can say for sure is that you're wrong. I believe this might just be a near-universal surprise. And a complicated one at that.
July 30, 2012
A Time Travel Fantasy
There's a new post up at Support for Special Needs, in recognition of the nine year anniversary of Schuyler's polymicrogyria diagnosis. It has been an indescribable nine years, and a tremendous contrast between fear and reality.
July 23, 2012
First
My latest post at Support for Special Needs addresses People First Language. I've written about this before, and I'm not sure my feelings have changed about it very much, but a discussion I had online recently made me think it might be time to revisit the topic. So here you go.
In other news, it is entirely possible that someone in a managerial situation in the city of Chicago might be saying to themselves, "Say, I'd really like to hire that Rob fellow to come work for me in my Factory of Hopes and Dreams, if only I could meet him face to face and determine if I like the cut of his jib."
Well, good news. Both me and my jib will be visiting next week. Let's make it happen.
In other news, it is entirely possible that someone in a managerial situation in the city of Chicago might be saying to themselves, "Say, I'd really like to hire that Rob fellow to come work for me in my Factory of Hopes and Dreams, if only I could meet him face to face and determine if I like the cut of his jib."
Well, good news. Both me and my jib will be visiting next week. Let's make it happen.
July 16, 2012
An Intervention
There's a new post up at Support for Special Needs. You will be perhaps ever so slightly unsurprised to hear that it involves the legal battle between the developers of the speech language app Speak for Yourself and the Prentke Romich Company.
Short version: We're getting involved, yo.
Short version: We're getting involved, yo.
July 9, 2012
Running on Empty
I said:
"I love a good outrage as much as anyone, but honestly? If I were required by law to give two shits about what 50 Cent thinks, I'd have to borrow them both."A few people took me to task for that, and they weren't wrong to do so. While I haven't exactly changed my position on this concerning the amount of outrage I have been able to muster about 50 Cent and his opinion about anything at all, I do try to at least address my lack of outrage and what that might mean about me at the moment.
You can go read about it on today's Support for Special Needs.
July 7, 2012
Buddy and the Way of Change
Just ask Buddy. If you can find him.
When we first moved to Plano almost seven years ago (it seems so strange to me to even say that, so impossible that we've been here that long), one of the first things we discovered was that living next to a duckpond and a city greenbelt meant a steady parade of interesting wildlife, like coyotes and a bobcat (named Bob, of course) and herons and even a snapping turtle that looked a little like something from Loch Ness. But our happiest discovery was a toad living just outside our apartment. We named him Buddy, for reasons that have long since escaped me.
Buddy would make a regular appearance right outside our door, and even in the beginning, he showed little fear. Being a twelve year-old boy at heart, I was never able to resist the urge to pick him up in those early years, and he expressed his displeasure in the way that all toads and frogs do. I believe they drink water all day just in case some manchild insists on picking them up.
But as the years passed, Buddy stopped peeing when I picked him up. He would simply hang there while I held him and showed him to Schuyler, who adored him from the beginning. He stood still while I took his photo. One night, I went outside and sat on the little stone wall next to our apartment and watched Buddy hunting for bugs. He had grown so accustomed to my presence by then that he went about his business without paying me any attention. I sat maybe two feet from him while he stalked his prey. As far as animal experiences go, it was pretty amazing.
And then, shortly after the gruesome gecko incident, Buddy disappeared. It has been weeks since I've seen him. Did he move away, following a shift in his food supply? Did his new chicky friend want a bigger place? Did one of the herons that lurk near the pond make a snack of him? Or even the snake whose shed skin we discovered in the grass last week? Did Buddy meet with tragedy, or did he simply ease on down the road?
The way of the world is the way of change. We say our goodbyes and we move on, and we do so with hearts that are heavy or with souls that are electrified with possibility, and we take pieces of all the homes and lives that we've led before. Those pieces become part of the complex tapestry of ourselves. Some are bittersweet and even tinged with regret, but they're all part of who we are, and who we are to become.
When we moved here, we did so powered by hope. Hope for this place, hope for Schuyler, hope that we'd found a place that could be home. And here's the thing. It was. Plano was a good fit for us for a long time before it soured. I don't regret moving here, not one bit. It was the right thing to do, and it saved Schuyler as much as any other choice we ever made.
Now that things have stagnated and now that Schuyler's future and whatever independence it might contain loom larger and more immediate, we could have stayed longer. Perhaps we should. And given the precarious job situation, perhaps we will be forced to do so a bit longer. But it's time to go. The way of the world, and the nature of change, is that it is rarely convenient. Change involves the breaking of things, not just building but rebuilding.
It's not easy. If it was, we'd all embrace change the way Schuyler does. She lives for change; she thrives on it in a way that runs counter to almost everything you've ever read about kids with disabilities. For Schuyler, their are no routines, only ruts. And so in her mind, the idea of moving to Chicago and starting at a new school and having new friends and expanding her family, it all makes perfect sense. She admitted to me again recently that she doesn't like her school now and doesn't have any real friends. If you're not a parent, I'm not sure I can explain to you how horrible and helpless that makes me feel. If you are, no explanation is required.
For Schuyler, change involves possibilities that are a little heartbreaking to me. She is eager to leave some things behind, and her ever-present optimism and belief in the future remains one of the more poignant aspects of her life to me. There's a lot that Chicago represents to us all, in ways that will become much more clear to everyone soon enough. We all have our personal as well as family reasons. But to Schuyler most of all, I think there's a persistent hope, possibly naive yet very real, that this time, she will find her place and her people.
I don't know what happened to Buddy, or if he'll return. If he does, one day in the hopefully imminent future I'll go pick him up one last time (from above, of course; pee on me once, shame on you...) and say goodbye to the only neighbor I ever really cared about. If Buddy has truly moved on, however, I can only say that I wish him well in his uncertain future. I wish the same for us all.
Update, 7/17: Buddy has returned! He let me pick him up last night without pissage, although he declined to have his photo taken. When I asked where he's been, he said he didn't want to talk about it. I'm guessing Vegas.
July 2, 2012
The Grownups
There's a new post up at Support for Special Needs, following my attendance at the 2012 AAC-RERC State of the Science Conference in Baltimore last week. Not a recap or anything that fancy, just an observation on one particular aspect of the conference.
One thing I didn't mention in my piece was the interesting observation that a number of representatives from the big assistive technology device makers were in attendance, which I appreciated very much. The discussions of the iPad and the consumer electronics in AAC tech couldn't have been a lot of fun for them. I was saddened and a little disappointed that PRC wasn't among the companies in attendance. I would have been interested in their input, and I'm going to say with confidence that they could have benefitted greatly from hearing what people had to say about the topic.
I don't feel like there's nearly enough active listening going on in the assisted speech industry at the moment, which is both ironic and a very great pity.
One thing I didn't mention in my piece was the interesting observation that a number of representatives from the big assistive technology device makers were in attendance, which I appreciated very much. The discussions of the iPad and the consumer electronics in AAC tech couldn't have been a lot of fun for them. I was saddened and a little disappointed that PRC wasn't among the companies in attendance. I would have been interested in their input, and I'm going to say with confidence that they could have benefitted greatly from hearing what people had to say about the topic.
I don't feel like there's nearly enough active listening going on in the assisted speech industry at the moment, which is both ironic and a very great pity.
June 25, 2012
Extraordinary Measures
There's a new post up at Support for Special Needs. I'm actually not entirely sure what to say to describe this one. I quote an old torch song, "The greatest thing you'll ever learn is just to love and be loved in return." I think that quote might just sum it up nicely.
I'm still looking for a job in Chicago, by the way. You know, in case you were thinking of offering me one but didn't want to get lost in the crush of offers coming my way. Crush away. Seriously. Don't make me beg.
I'm still looking for a job in Chicago, by the way. You know, in case you were thinking of offering me one but didn't want to get lost in the crush of offers coming my way. Crush away. Seriously. Don't make me beg.
June 18, 2012
A Day Without Lawyers
There's a new post over at Support for Special Needs. More talk about the legal song and dance between the developers of Speak for Yourself and the Prentke Romich Company. The whole thing has grown exactly as frustrating and ridiculous as you might imagine. Honestly, I'd write more, but the topic is exhausting.
June 14, 2012
Beautiful Freak
You're such a beautiful freak
I wish there were more just like you
You're not like all of the others
Schuyler has always loved music, which is no surprise given that she's been surrounded by it from day one, and I've always sung to her. In recent years, we've sung to each other, in those moments we share alone. Schuyler and I spend a great deal of time together, particularly once she's out of school. She accompanies me to work most days, and in the long car ride, we sing, a lot.
The other day, we were singing an Eels song, which is hardly surprising to anyone who knows us. The music of Mark Oliver Everett has always been ours, Schuyler's and mine together, ever since she was a baby and I would sing My Beloved Monster and Me to her. It was fitting; she was my strange little monster, even before I knew why, and we really did go everywhere together, as we still do today. As she grew older, particularly in the dark days after her diagnosis, I would sing her to sleep with The Stars Shine in the Sky Tonight ("It's not where you're coming from / It's where you're going to / And I just wanna go with you…"), thinking of a future where she might have to go forward without me, or me without her.
But this week, it was a simpler, happier song, Beautiful Freak. Every time I sing it to her and point to her, she laughs, and the way she sings it back to me, in her strange tongue that so few in the world are privileged to hear and even fewer to understand, it makes my heart soar. We have so many nicknames for each other (her current favorite for me is "Daddy-O", which I adore beyond description), and few of them are gentle. Dummy. Butthead. Buggin. Space Monkey. Freak.
And that is why I love you
Beautiful freak, beautiful freak
That is why I love you
Beautiful freak, beautiful freak
"Daddy," she asks, "Am I a freak?"
I look at her face carefully, searching for anxiety. Is this a word she's heard before, from the lips of mean kids? But no, there's nothing there. She's smiling. She just wants to talk.
I want to say no, but it doesn't feel like the right answer.
"We're all freaks," I say. "Everyone in the world feels like a freak sometimes."
"Is it bad?" she asks.
"It's not bad," I say. "Sometimes people use that word to be mean, but it's only mean if you take it that way. Everyone is different, and you're more different than most, you know? That's why you're my beautiful freak."
Some people think you have a problem
But that problem lies only with them
Just 'cause you are not like the others
I've always maintained that the only things I could really promise Schuyler are love and the truth. And so I've never pretended that she's not different, or that her difference wouldn't be difficult to bear sometimes.
Schuyler knows she's different. And when we sing, when she's a beautiful freak and she's loved for it, she's okay with it. It's a hard life for her, and it's not going to necessarily get that much easier, but it's hers and she's making her peace with it.
And I think it's pretty clear that Schuyler has figured something out about her father, something that the song reaffirms but which she's probably known all along, longer than I've been aware, even.
She knows that my love for her runs even deeper because she's different. That her difference fuels my affection in a way that is impossible to understand or define.
Too good for this world
But I hope you will stay
And I'll be here to see
That you don't fade away
When Schuyler and I move through the world together, we do so in a way that is different from her other relationships. It's different even than those moments when anyone else is around. Schuyler gives her attention to others in a way that can be intense; I can only assume that there are a few restraining orders in her future. But when it's just the two of us, when no one else is there, we occupy a space that is ours and ours alone. Schuyler holds my hand when we drive. She claims one shoulder for her own and just holds on. We share food and we sing songs and we say snotty things about other drivers. We find vending machines and eat bad snacks. We count airplanes overhead, every day.
I frequently write about Schuyler as a child with a disability because that's the thing that we struggle with the most, and the thing that speaks to a larger community the most clearly. But it's important to understand that the experience isn't hard because of her. It's hard because of the world. It's hard because society requires her to fit, in a way that she doesn't do easily, and while I would love to change the world, that's not ever going to happen, not to the extent that it should.
I can't change THE world, but I can try to change hers, to build a space around her where she can exist on her own terms, at least enough to regroup and recharge before she goes back into the fray, back into a land of passing, of trying to fit, and of trying to hold her head up while a dumb world expects her to apologize for being a beautiful freak. I can try, for as long as it is within my power, to see that she doesn't fade away.
You're such a beautiful freak
I bet you are flying inside
Dart down and then go for cover
Schuyler needs to be enabled. She needs to be given tools to communicate, options for freedom, opportunities to love and be loved. Schuyler could be an amazing big sister to someone, and she is easily the very best friend that anyone could have if only they would ask her to be. Given the right environment, Schuyler will thrive. She will grow wings and she will fly away, far from the doubters and far from these who would limit her and diminish her value and her humanity with their lack of vision.
And far from me one day. I hope that she can, even as I hope she never does. For like every other dad since the beginning, it is the fate of this father's heart to be broken, in ways I could never see coming, and could never, even in my most selfish moments, ever deny my beloved monster.
And know that I
I love you
Beautiful freak, beautiful freak
June 4, 2012
The Future is its Own Kind of Monster
My latest post at Support for Special Needs discusses how the end of the school year means facing the future, and how for those of us with kids with disabilities, looking into that future can be pretty disconcerting.
In other news, Schuyler finally got her year-long dream over the weekend, which was to color her hair blue. Except it didn't turn out blue, not even close. She was disappointed (How many little girls dream of having hair that is gunmetal grey?), but it grew on her. I knew we were going to be okay when she looked at herself in the mirror, paused, and then said "I look evil!"
In other news, Schuyler finally got her year-long dream over the weekend, which was to color her hair blue. Except it didn't turn out blue, not even close. She was disappointed (How many little girls dream of having hair that is gunmetal grey?), but it grew on her. I knew we were going to be okay when she looked at herself in the mirror, paused, and then said "I look evil!"
May 28, 2012
Speaking for Herself
It's Monday, meaning there's a new post at Support for Special Needs. Today I discuss Schuyler's own self-advocacy where her communications are concerned, making real decisions regarding how she chooses to make herself heard.
But I Was Looking at the Permanent Stars (Memorial Day 2012)
Bugles sang, saddening the evening air,
And bugles answered, sorrowful to hear.
Voices of boys were by the river-side.
Sleep mothered them; and left the twilight sad.
The shadow of the morrow weighed on men.
Voices of old despondency resigned,
Bowed by the shadow of the morrow, slept.
( ) dying tone
Of receding voices that will not return.
The wailing of the high far-travelling shells
And the deep cursing of the provoking ( )
The monstrous anger of our taciturn guns.
The majesty of the insults of their mouths.
-- Wilfred Owen
And bugles answered, sorrowful to hear.
Voices of boys were by the river-side.
Sleep mothered them; and left the twilight sad.
The shadow of the morrow weighed on men.
Voices of old despondency resigned,
Bowed by the shadow of the morrow, slept.
( ) dying tone
Of receding voices that will not return.
The wailing of the high far-travelling shells
And the deep cursing of the provoking ( )
The monstrous anger of our taciturn guns.
The majesty of the insults of their mouths.
-- Wilfred Owen
May 21, 2012
Fail
There's a new post at Support for Special Needs. It's not long, but it was hard to write.
I hope I don't have to write another one like this for a long, long time.
I hope I don't have to write another one like this for a long, long time.
May 14, 2012
The End of an Experiment
There's a new post over at Support for Special Needs. My thoughts on the conclusion of a program that really did make the difference in Schuyler's life.
May 12, 2012
An Undiscovered Country
In the past year or so, Schuyler has made a discovery. It's one I've always known she would make, and always anticipated with a heavy heart. Inevitable, perhaps, for any person with an essentially good heart and a love for the world that it has neither earned nor returned.
Schuyler is learning how to be sad.
She learned in middle school that being surrounded by people doesn't mean you can't be lonely. She learned that people will look at a kid like her and make assumptions that are extremely unkind, assumptions that she can't easily dispel. She learned that her brain can betray her, can leave her confused and dispirited, and that as she grows older, that betrayal only grows worse. The last few times that she's suffered partial complex seizures have left her crying. She had one last night in the middle of dinner with friends that left her sobbing, for no reason she could identify. "I can't stop crying," she kept saying to me, and the confusion in her voice was, for me, perhaps the most heartbreaking of the many bad things about her fucking monster.
Schuyler is coming to realizations about this grand, rough world that she probably already knew, but in the last year or so, she's taken those lessons to heart.
Today I accompanied Schuyler to her middle school band's annual trip to a local water park. I was attending as a parent chaperone, doing things like checking names as the kids got on the bus and handing out wristbands and such, but when the rest of the chaperones' jobs were done and the kids were in the park, my real duty began. The band director, a good and decent person who really does real damage to the crappy reputation of conductors everywhere (I kid, I kid...), recognizes our daughter's challenges, and she works harder than we have any right to expect in order to make Schuyler's band experience a good one. She put me on the chaperone list, I believe, so that I could keep an eye on Schuyler.
Schuyler had a good start to the day as she and a friend gravitated to each other immediately. But I knew we might be in trouble when I saw the girl later with someone else. When Schuyler found me, she was frowning.
"She found another friend," she said. I tried to explain that just because her friend was playing with someone else didn't mean anything bad, and that sometimes people just change up their buddies from time to time, but she wasn't convinced. I honestly had no idea what had happened, but I know Schuyler. She's an amazing person, but she can smother her friends. It's always been a problem and it will continue to be one, until she finds her person, the one who only wants more of her, not less. And that girl or boy will be her soulmate and her forever person, and that will be that.
We sat down for lunch, and were having a pretty good time. Schuyler was fighting a losing battle with a hot dog that she had inadvertently smothered in a toxic strata of mustard, but she was soldiering on. And that's when we heard it, from the table next to ours. A girl, laughing and yelling at her friend.
"You are a retard!"
Schuyler stopped. Her face froze, and she turned to look at the kids. They were oblivious; I don't even think they were from her school. They carried on, not knowing what they had just done, which I suppose is true of the majority of people who casually throw that word around. But I knew. I could see it on Schuyler's face. She turned back to her lunch, her face now a careful mask.
"Are you okay?" I asked. There was no need to acknowledge what had been said.
"I'm not a retard," she said quietly. "That's a mean word."
I tried to explain that the girl wasn't talking about her at all, but Schuyler was absolutely convinced that she was. Beyond that, I explained, not for the first or I suspect the last time, that people who use that word don't have the first clue about who Schuyler is or what she's capable of. That word has nothing to do with her, I said, and people who use it only make themselves smaller, not her. Schuyler sat quietly, not even looking at me when I snapped a photo of her, trying to cheer her up. She listened, but she didn't hear. She'd already heard what she needed to, and not from me, but from one of her peers.
Finally she gave me a lingering hug and said something that I can tell you for a fact that she has never said to me in her young life, yet something that I've said a hundred times to just about any person who has ever loved me, ever. I suppose it was just a matter of time.
"I want to go walk around by myself," she said. "Okay?"
"Okay," I said. And she did, for almost an hour. She was never alone, because I followed her from a distance, watching. Maybe that was the wrong thing to do, but it didn't feel wrong. I know it wasn't the wrong thing to do. Sometimes the hardest part of being a father is when there's absolutely nothing I can do to make it better. Just follow, and let her sadness resonate with my own.
She walked with her hood pulled up, her hands in her pockets, her face cast down, moving sadly through the park and the world like a ghost.
Schuyler is learning how to be sad.
She learned in middle school that being surrounded by people doesn't mean you can't be lonely. She learned that people will look at a kid like her and make assumptions that are extremely unkind, assumptions that she can't easily dispel. She learned that her brain can betray her, can leave her confused and dispirited, and that as she grows older, that betrayal only grows worse. The last few times that she's suffered partial complex seizures have left her crying. She had one last night in the middle of dinner with friends that left her sobbing, for no reason she could identify. "I can't stop crying," she kept saying to me, and the confusion in her voice was, for me, perhaps the most heartbreaking of the many bad things about her fucking monster.
Schuyler is coming to realizations about this grand, rough world that she probably already knew, but in the last year or so, she's taken those lessons to heart.
Today I accompanied Schuyler to her middle school band's annual trip to a local water park. I was attending as a parent chaperone, doing things like checking names as the kids got on the bus and handing out wristbands and such, but when the rest of the chaperones' jobs were done and the kids were in the park, my real duty began. The band director, a good and decent person who really does real damage to the crappy reputation of conductors everywhere (I kid, I kid...), recognizes our daughter's challenges, and she works harder than we have any right to expect in order to make Schuyler's band experience a good one. She put me on the chaperone list, I believe, so that I could keep an eye on Schuyler.
Schuyler had a good start to the day as she and a friend gravitated to each other immediately. But I knew we might be in trouble when I saw the girl later with someone else. When Schuyler found me, she was frowning.
"She found another friend," she said. I tried to explain that just because her friend was playing with someone else didn't mean anything bad, and that sometimes people just change up their buddies from time to time, but she wasn't convinced. I honestly had no idea what had happened, but I know Schuyler. She's an amazing person, but she can smother her friends. It's always been a problem and it will continue to be one, until she finds her person, the one who only wants more of her, not less. And that girl or boy will be her soulmate and her forever person, and that will be that.
We sat down for lunch, and were having a pretty good time. Schuyler was fighting a losing battle with a hot dog that she had inadvertently smothered in a toxic strata of mustard, but she was soldiering on. And that's when we heard it, from the table next to ours. A girl, laughing and yelling at her friend.
"You are a retard!"
Schuyler stopped. Her face froze, and she turned to look at the kids. They were oblivious; I don't even think they were from her school. They carried on, not knowing what they had just done, which I suppose is true of the majority of people who casually throw that word around. But I knew. I could see it on Schuyler's face. She turned back to her lunch, her face now a careful mask.
"Are you okay?" I asked. There was no need to acknowledge what had been said.
"I'm not a retard," she said quietly. "That's a mean word."
I tried to explain that the girl wasn't talking about her at all, but Schuyler was absolutely convinced that she was. Beyond that, I explained, not for the first or I suspect the last time, that people who use that word don't have the first clue about who Schuyler is or what she's capable of. That word has nothing to do with her, I said, and people who use it only make themselves smaller, not her. Schuyler sat quietly, not even looking at me when I snapped a photo of her, trying to cheer her up. She listened, but she didn't hear. She'd already heard what she needed to, and not from me, but from one of her peers.
Finally she gave me a lingering hug and said something that I can tell you for a fact that she has never said to me in her young life, yet something that I've said a hundred times to just about any person who has ever loved me, ever. I suppose it was just a matter of time.
"I want to go walk around by myself," she said. "Okay?"
"Okay," I said. And she did, for almost an hour. She was never alone, because I followed her from a distance, watching. Maybe that was the wrong thing to do, but it didn't feel wrong. I know it wasn't the wrong thing to do. Sometimes the hardest part of being a father is when there's absolutely nothing I can do to make it better. Just follow, and let her sadness resonate with my own.
She walked with her hood pulled up, her hands in her pockets, her face cast down, moving sadly through the park and the world like a ghost.
 |
| "...her little heart it could explode." |
May 7, 2012
The Anxious Season
There is a new post up at Support for Special Needs. Schuyler's IEP meeting is later today, so I decided to share my thoughts on that whole process.
The big news today is that for the first time, Schuyler will be attending that meeting. This has been something we've always wanted her to do, as soon as she was ready. She's going to share her decision with the committee as to what assistive tech solution she has chosen for next year. We've given that decision over to her entirely, and she has been extremely mature and contemplative in making that choice.
I couldn't be more proud of her.
The big news today is that for the first time, Schuyler will be attending that meeting. This has been something we've always wanted her to do, as soon as she was ready. She's going to share her decision with the committee as to what assistive tech solution she has chosen for next year. We've given that decision over to her entirely, and she has been extremely mature and contemplative in making that choice.
I couldn't be more proud of her.
April 30, 2012
Touch
There's a new post up at Support for Special Needs. Schuyler had a problem at school, one without any easy answers. Well, that's hardly new.
April 23, 2012
The Fated Family
There's a new entry at Support for Special Needs about how the process of building families is perhaps different for parents of kids with special needs.
A few weeks ago, I wrote about a new AAC app, Speak for Yourself, which is the subject of a lawsuit by the Prentke Romich Company. Well, the developers were kind enough to let me see and evaluate the app with Schuyler. I'll be writing something this week on that very subject. Cool, a teaser…
A few weeks ago, I wrote about a new AAC app, Speak for Yourself, which is the subject of a lawsuit by the Prentke Romich Company. Well, the developers were kind enough to let me see and evaluate the app with Schuyler. I'll be writing something this week on that very subject. Cool, a teaser…
April 16, 2012
The Island
Once again, it's time for a new post over at Support for Special Needs. I wanted to offer something up to the parents and families out there dealing with external monsters on top of the personal ones that nip at their heels without rest. I've felt badly for special needs parents of late; it seems like the world has been unusually cruel to a lot of them. And it reminded me of something I wrote in my book, a fantasy about escaping to an island.
It was an entirely wrong-headed fantasy, and I knew it back then. Even today, however, it holds some of the same appeal to me as it did years ago when I'd stand on the beach in Connecticut with Schuyler and wish that the future that I was afraid would bedevil her was on the other side of the sea. If it was just us, protected from that future and the grand rough world, I thought, we would make it just fine.
As it turns out, we did anyway.
It was an entirely wrong-headed fantasy, and I knew it back then. Even today, however, it holds some of the same appeal to me as it did years ago when I'd stand on the beach in Connecticut with Schuyler and wish that the future that I was afraid would bedevil her was on the other side of the sea. If it was just us, protected from that future and the grand rough world, I thought, we would make it just fine.
As it turns out, we did anyway.
April 14, 2012
Fat Talk
It began, like so many silly things do here in the heady days of The Future, with a comment I made on Facebook.
"I lost ten pounds in the week since I was at the doctor. No joke. Perhaps I should let this infection linger a little longer."
The short version of backstory is that for the past week and a half, I have been sick. REALLY sick, actually, with a one-two punch of what the doctor wanted to call pneumonia but which I weaseled her down to bronchitis (because I am so very very charming, no doubt) and a wicked sinus infection. The bronchitis was under control fairly quickly, but the sinus infection, my very first, lingered painfully and disgustingly. I'm going to skip the details, but suffice to say that due to a near-constant nausea, I had very little to eat that week. When I returned to the doctor for new, hopefully not-pretend antibiotics, the nurse weighed me, and yep. I had lost exactly ten pounds in the course of a week.
So I posted that fun little status update. There are two parts to it, which I believe can be identified as a) the "silver lining" part, and b) the "obviously a joke" part.
Well, maybe not entirely obviously. Someone left what I felt was a passive-aggressive response, linking (without comment) to "How To Spot Fat Talk So You Can Stop It". When I called her on it, she took the "oh, I'm just saying…" approach, and that pushed my button, I guess. Don't walk in the room, release a flatus and then pretend it wasn't you. She said she found "fat talk" to be toxic, and I guess it didn't matter that I was talking about myself, and that no, I wasn't actually advocating the use of illness for radical weight loss.
Because here's the thing: I didn't make a choice. Getting a nasty infection wasn't part of my plan. I didn't stop taking my antibiotics or stick Cheetos up my nose. I was sick, it sucked a very great deal, and I didn't eat much. I didn't really understand how much weight I was losing because I wasn't changing out of my pajamas much. I was a delightful treat; if you had knocked on my door this week, when I answered the door, you wouldn't have thought "Sexy MAN!" You might have phoned up the Centers for Disease Control after you finished spraying Lysol in your face.
I'm going to be blunt. She seemed like a perfectly nice person, but I found her point to be extremely unconvincing, as was another comment by someone else later. Because, again, it was a joke, and again, it wasn't a joke at someone else's expense. You can't just show up on someone else's Facebook page and take their self-referencing, self-deprecating humor and sanctimoniously apply it to yourself. Well, you can, but I'm not sure why you would want to.
Anyway, the whole thing got a little out of hand. (Trust me, you want to read that. I'll wait.)
Fun Internet kookery aside, weight is a tricky issue to discuss publicly. I know that in the "fat-o-sphere" (I really did just type that), there are a lot of specific rules for how these discussions are supposed to take place, with lots of trigger warnings and the like. I know none of these rules, and I'm not sure I care to learn them. Not because I'm a dick (or not JUST because, if you prefer), but because the weight issues I'm discussing are my own. I'm not sure I need a set of guidelines to talk about me.
I've always had issues with weight, ever since I was a kid. And while I've never been morbidly obese, I can't remember the last time I was exactly fit, either. I'm going to use some actual numbers today, since I'm sitting at the low end at the moment. For scale, I am six foot, two inches tall and possess all my limbs and parts in the usual proportions.
At my worst, during what might be termed my "County Fair" days, I weighed 280 pounds. No joke. I remember that day, when I stepped on the scale and saw that number. I was young, too, maybe twenty-six or so. I spent the prime of my youth eating and (more to the point) drinking as if an alien invasion were imminent. All I got for my troubles was about ten years of photos I will never show anyone, and well, yeah, perhaps a little type 2 diabetes. (That was a joke, too. I come from a long line of genetic diabetics, although I certainly tossed enough gasoline on the fire.)
By the time I met Julie, I was way down from that, maybe 250 pounds. I lost a bunch of weight when I was diagnosed with The Beedies at 37, but then I published a book and ate and drank a lot and gained pretty much all of it back. The last time I really remember weighing myself was about a year ago, and I was at an unpleasant 245.
Now here's where it gets fun. Last week, when I went to the doctor, I was surprised to find that I weighed 223 pounds. I knew I had lost some weight; my clothes told me that. But twenty pounds, for nothing? I was pleased.
When I went back to the doctor exactly one week later? 213 pounds. That's not all that far from my doctor's target weight for me. The last time I weighed this little, I think I was still receiving lunch money.
For those of you who also have had weight issues during your life, however, you understand a kind of universal truth. Numbers don't always mean a whole lot to a fat person. Not good ones, anyway. And when I say "fat person", I mean that in the same way that someone who has been clean and sober for twenty years still self-identifies as an alcoholic. Sometimes you can tell the formerly fat person by the clothes they wear, at least a size too large, as if they don't trust what their own senses tell them in the dressing room. I imagine sometimes you can identify the formerly fat in the ranks of the extremely fit and healthy. They watch those numbers closely, perhaps a little grimly. Their own silent exercise mantra might be "Never again."
You can be the obscenely rich CEO of a major corporation, but you can still probably list the names of the bullies who made fun of you when you were a little fat kid. You can have the most beautiful and successful man or woman on your arm at an elegant dinner party, but if you close your eyes, you can clearly see the faces of the pretty girl or the handsome boy who turned you down in school with a barely-concealed smirk on their face, the universal "As if!" sneer.
And if you were a fat kid who discovered early on that you could make people laugh at the jokes you made instead of the shape of your body, then you made sure to hone those skills. You learned to make jokes, and not just innocent ones, either. You learned that the easiest way to deflate a bully was to get the crowd to laugh at him instead, so you developed a sense of humor with an edge, and you never forgot how to use it. And you never ever forgot that if you really wanted to be funny and to keep yourself in the good graces of others, you saved the most biting jokes for yourself.
And when someone shows up on your Facebook page to tell you to use nice words when you talk about weight issues, even when you're talking about yourself, you push back. And you should. Because no matter what your size now, you're a fat person. And you're not about to let someone who (in your mind) apparently hasn't figured out How Things Work take away your own best defenses simply because when they see "fat talk", they take it to heart, as if every conversation about fat people is a conversation about them. As if the warm embrace of "The Fat-o-sphere" is the only place one can find relief, with words of acceptance and maybe some denial, but never anything harsh or sad.
Some of us, and I'm going to say that includes a lot of you reading right now, some of us learned a different way. And whether we hide our fat person past or joke about it or sweat and bleed it away at the gym, we at the very least own our fat person in our own way. If you're a fat person and you try to change that, you might be a well-intentioned person, but you really ought to know better.
"I lost ten pounds in the week since I was at the doctor. No joke. Perhaps I should let this infection linger a little longer."
The short version of backstory is that for the past week and a half, I have been sick. REALLY sick, actually, with a one-two punch of what the doctor wanted to call pneumonia but which I weaseled her down to bronchitis (because I am so very very charming, no doubt) and a wicked sinus infection. The bronchitis was under control fairly quickly, but the sinus infection, my very first, lingered painfully and disgustingly. I'm going to skip the details, but suffice to say that due to a near-constant nausea, I had very little to eat that week. When I returned to the doctor for new, hopefully not-pretend antibiotics, the nurse weighed me, and yep. I had lost exactly ten pounds in the course of a week.
So I posted that fun little status update. There are two parts to it, which I believe can be identified as a) the "silver lining" part, and b) the "obviously a joke" part.
Well, maybe not entirely obviously. Someone left what I felt was a passive-aggressive response, linking (without comment) to "How To Spot Fat Talk So You Can Stop It". When I called her on it, she took the "oh, I'm just saying…" approach, and that pushed my button, I guess. Don't walk in the room, release a flatus and then pretend it wasn't you. She said she found "fat talk" to be toxic, and I guess it didn't matter that I was talking about myself, and that no, I wasn't actually advocating the use of illness for radical weight loss.
Because here's the thing: I didn't make a choice. Getting a nasty infection wasn't part of my plan. I didn't stop taking my antibiotics or stick Cheetos up my nose. I was sick, it sucked a very great deal, and I didn't eat much. I didn't really understand how much weight I was losing because I wasn't changing out of my pajamas much. I was a delightful treat; if you had knocked on my door this week, when I answered the door, you wouldn't have thought "Sexy MAN!" You might have phoned up the Centers for Disease Control after you finished spraying Lysol in your face.
I'm going to be blunt. She seemed like a perfectly nice person, but I found her point to be extremely unconvincing, as was another comment by someone else later. Because, again, it was a joke, and again, it wasn't a joke at someone else's expense. You can't just show up on someone else's Facebook page and take their self-referencing, self-deprecating humor and sanctimoniously apply it to yourself. Well, you can, but I'm not sure why you would want to.
Anyway, the whole thing got a little out of hand. (Trust me, you want to read that. I'll wait.)
Fun Internet kookery aside, weight is a tricky issue to discuss publicly. I know that in the "fat-o-sphere" (I really did just type that), there are a lot of specific rules for how these discussions are supposed to take place, with lots of trigger warnings and the like. I know none of these rules, and I'm not sure I care to learn them. Not because I'm a dick (or not JUST because, if you prefer), but because the weight issues I'm discussing are my own. I'm not sure I need a set of guidelines to talk about me.
I've always had issues with weight, ever since I was a kid. And while I've never been morbidly obese, I can't remember the last time I was exactly fit, either. I'm going to use some actual numbers today, since I'm sitting at the low end at the moment. For scale, I am six foot, two inches tall and possess all my limbs and parts in the usual proportions.
At my worst, during what might be termed my "County Fair" days, I weighed 280 pounds. No joke. I remember that day, when I stepped on the scale and saw that number. I was young, too, maybe twenty-six or so. I spent the prime of my youth eating and (more to the point) drinking as if an alien invasion were imminent. All I got for my troubles was about ten years of photos I will never show anyone, and well, yeah, perhaps a little type 2 diabetes. (That was a joke, too. I come from a long line of genetic diabetics, although I certainly tossed enough gasoline on the fire.)
By the time I met Julie, I was way down from that, maybe 250 pounds. I lost a bunch of weight when I was diagnosed with The Beedies at 37, but then I published a book and ate and drank a lot and gained pretty much all of it back. The last time I really remember weighing myself was about a year ago, and I was at an unpleasant 245.
Now here's where it gets fun. Last week, when I went to the doctor, I was surprised to find that I weighed 223 pounds. I knew I had lost some weight; my clothes told me that. But twenty pounds, for nothing? I was pleased.
When I went back to the doctor exactly one week later? 213 pounds. That's not all that far from my doctor's target weight for me. The last time I weighed this little, I think I was still receiving lunch money.
For those of you who also have had weight issues during your life, however, you understand a kind of universal truth. Numbers don't always mean a whole lot to a fat person. Not good ones, anyway. And when I say "fat person", I mean that in the same way that someone who has been clean and sober for twenty years still self-identifies as an alcoholic. Sometimes you can tell the formerly fat person by the clothes they wear, at least a size too large, as if they don't trust what their own senses tell them in the dressing room. I imagine sometimes you can identify the formerly fat in the ranks of the extremely fit and healthy. They watch those numbers closely, perhaps a little grimly. Their own silent exercise mantra might be "Never again."
You can be the obscenely rich CEO of a major corporation, but you can still probably list the names of the bullies who made fun of you when you were a little fat kid. You can have the most beautiful and successful man or woman on your arm at an elegant dinner party, but if you close your eyes, you can clearly see the faces of the pretty girl or the handsome boy who turned you down in school with a barely-concealed smirk on their face, the universal "As if!" sneer.
And if you were a fat kid who discovered early on that you could make people laugh at the jokes you made instead of the shape of your body, then you made sure to hone those skills. You learned to make jokes, and not just innocent ones, either. You learned that the easiest way to deflate a bully was to get the crowd to laugh at him instead, so you developed a sense of humor with an edge, and you never forgot how to use it. And you never ever forgot that if you really wanted to be funny and to keep yourself in the good graces of others, you saved the most biting jokes for yourself.
And when someone shows up on your Facebook page to tell you to use nice words when you talk about weight issues, even when you're talking about yourself, you push back. And you should. Because no matter what your size now, you're a fat person. And you're not about to let someone who (in your mind) apparently hasn't figured out How Things Work take away your own best defenses simply because when they see "fat talk", they take it to heart, as if every conversation about fat people is a conversation about them. As if the warm embrace of "The Fat-o-sphere" is the only place one can find relief, with words of acceptance and maybe some denial, but never anything harsh or sad.
Some of us, and I'm going to say that includes a lot of you reading right now, some of us learned a different way. And whether we hide our fat person past or joke about it or sweat and bleed it away at the gym, we at the very least own our fat person in our own way. If you're a fat person and you try to change that, you might be a well-intentioned person, but you really ought to know better.
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| Yours truly at 213. Don't get too accustomed to it... |
April 11, 2012
Andy Richter Saddens the Universe
When we talk about the dehumanization of people with disabilities, there's a general dismay that receives a certain amount of lip service, but there's a sad reality, too. Not every slur against every disability receives the same amount of outrage. Not every lobby inspires the same level of hesitation from those who might be considering making a joke in a film or on television or wherever. Some of our tribes are very, very small. The number of fists we can shake at the sky is limited.
Which is probably why comedian and Conan co-host Andy Richter didn't hesitate to make this joke earlier tonight:
There are a few reasons this bothers me, some of them very personal. But let's get this out of the way first: Andy Richter is a smart and funny guy. And that's part of the problem here. When someone like Tracy Morgan makes some joke about "retarded people", we are outraged for sure. But on some level, we might also look at both the joke and the comedian and say, "Well, honestly, that's pretty dumb."
But Richter has been one of the more intelligent and on-the-fly funny personalities on television for a long time. And there's something about this joke that seems especially cruel. The joke doesn't work (inasmuch as it works at all) unless you know about microcephaly. The joke is that persons with microcephaly have small heads. Get it? And to make this joke, Andy Richter had to be completely aware of what microcephaly is.
Of all the problems with this joke, awareness isn't one of them.
A few harsh points, then. When Richter asks if microcephaly is now considered sexy, he's kidding. If he wasn't kidding, however, the answer would be mostly no. It's not sexy because the word "sexy" is probably only really appropriate when applied to adults. Persons born with more pronounced microcephaly don't generally make it very far into adulthood. Many of them die young, buried by their heartsick parents.
I had the opportunity to meet with a great many of these parents and their amazing children a few summers ago at what is now called the Microcephaly, Lissencephaly and Polymicrogyria Convention, a huge labor of love presented by the Foundation for Children with Microcephaly. I got to know some of the most amazing people in the world at that conference; it literally changed my life.
And I learned to appreciate just how closely their world intersected with mine. At this conference, kids were examined by some of the top experts in the world, including Dr. William Dobyns, the doctor who diagnosed Schuyler's polymicrogyria. (The first thing he did when he met Schuyler in 2005 was measure her head to rule out microcephaly.) At the closing lecture, Dr. Dobyns surprised me by reporting that aside from microcephaly, the most common diagnosis he had given out at the conference was polymicrogyria.
Polymicrogyria. Microcephally. Lissencephaly. Not many advocacy groups for these monsters. No telethons or puzzle pieces or a month for awareness. No inspiring actors in popular tv shows. No movies about a Very Special Child. And no hesitation by a popular and successful tv comedian to make a joke about them, a joke that his clever fans might have to google to even understand and laugh about.
If Schuyler's disability were one that showed on her face, if she were shaped differently because of the little monster in her brain, then perhaps a famous comedian could make a joke about her, too. Perhaps I should feel lucky. Lucky that Schuyler can hide in plain sight, lucky that her appearance doesn't bring out the worst in others, lucky that she might just get to grow up without going to a movie or watching tv and seeing herself as the punchline to a joke.
But I don't feel lucky. I feel sad, mostly for the friends I made at that conference three years ago. Some of those friends have probably buried their children by now. Those who haven't probably don't have the time or the energy to be outraged at Andy Richter's monstrous, stupid joke. I'm sad for all their beautiful children, and for all the kids out there whose disability marks them in a way that attracts pointing jackass fingers. I'm sad for all the ones who can't understand the jokes that are being made, or are even aware that they are being mocked at all. That makes it worse in my eyes, not better.
Once again, I feel like the world really isn't ready to make space for our kids or our families. There's a table, and that table is set for the empowered, and it's even set for the disenfranchised.
But only if you're human. Only if you're better than a punchline.
UPDATE, 11:30am
About an hour ago, Andy Richter removed the offending tweet. It it's place, he made the following statement:
I can't speak for anyone else, but I would like to thank Andy Richter for this gesture. We all have a lot of growing to do, myself as much as anyone.
Which is probably why comedian and Conan co-host Andy Richter didn't hesitate to make this joke earlier tonight:
@Andy_Richter
RE: the-baseball-cap-that-fits-over-the-tops-of-the-ears trend: is microcephaly now considered sexy?
But Richter has been one of the more intelligent and on-the-fly funny personalities on television for a long time. And there's something about this joke that seems especially cruel. The joke doesn't work (inasmuch as it works at all) unless you know about microcephaly. The joke is that persons with microcephaly have small heads. Get it? And to make this joke, Andy Richter had to be completely aware of what microcephaly is.
Of all the problems with this joke, awareness isn't one of them.
A few harsh points, then. When Richter asks if microcephaly is now considered sexy, he's kidding. If he wasn't kidding, however, the answer would be mostly no. It's not sexy because the word "sexy" is probably only really appropriate when applied to adults. Persons born with more pronounced microcephaly don't generally make it very far into adulthood. Many of them die young, buried by their heartsick parents.
I had the opportunity to meet with a great many of these parents and their amazing children a few summers ago at what is now called the Microcephaly, Lissencephaly and Polymicrogyria Convention, a huge labor of love presented by the Foundation for Children with Microcephaly. I got to know some of the most amazing people in the world at that conference; it literally changed my life.
And I learned to appreciate just how closely their world intersected with mine. At this conference, kids were examined by some of the top experts in the world, including Dr. William Dobyns, the doctor who diagnosed Schuyler's polymicrogyria. (The first thing he did when he met Schuyler in 2005 was measure her head to rule out microcephaly.) At the closing lecture, Dr. Dobyns surprised me by reporting that aside from microcephaly, the most common diagnosis he had given out at the conference was polymicrogyria.
Polymicrogyria. Microcephally. Lissencephaly. Not many advocacy groups for these monsters. No telethons or puzzle pieces or a month for awareness. No inspiring actors in popular tv shows. No movies about a Very Special Child. And no hesitation by a popular and successful tv comedian to make a joke about them, a joke that his clever fans might have to google to even understand and laugh about.
If Schuyler's disability were one that showed on her face, if she were shaped differently because of the little monster in her brain, then perhaps a famous comedian could make a joke about her, too. Perhaps I should feel lucky. Lucky that Schuyler can hide in plain sight, lucky that her appearance doesn't bring out the worst in others, lucky that she might just get to grow up without going to a movie or watching tv and seeing herself as the punchline to a joke.
But I don't feel lucky. I feel sad, mostly for the friends I made at that conference three years ago. Some of those friends have probably buried their children by now. Those who haven't probably don't have the time or the energy to be outraged at Andy Richter's monstrous, stupid joke. I'm sad for all their beautiful children, and for all the kids out there whose disability marks them in a way that attracts pointing jackass fingers. I'm sad for all the ones who can't understand the jokes that are being made, or are even aware that they are being mocked at all. That makes it worse in my eyes, not better.
Once again, I feel like the world really isn't ready to make space for our kids or our families. There's a table, and that table is set for the empowered, and it's even set for the disenfranchised.
But only if you're human. Only if you're better than a punchline.
UPDATE, 11:30am
About an hour ago, Andy Richter removed the offending tweet. It it's place, he made the following statement:
I offended a lot of people yesterday with a tweet using the word "microcephaly". It was not my intention to mock disability. I normally am not bothered by offending people, but in this case, I am. I make jokes, and this was one I shouldn't have made. I apologize for my insensitivity in this instance.
I can't speak for anyone else, but I would like to thank Andy Richter for this gesture. We all have a lot of growing to do, myself as much as anyone.
April 9, 2012
Anatomy of a Storm
It's Monday, which means I'm about to make excuses for not posting anything since LAST Monday. This week's excuse is a little better than usual; I got a massive sinus infection at the same time that my tenacious lung funk made its Big Push to end the war. The doctor said I probably have pneumonia and wanted me to go to the hospital, but I managed to talk my way out of that fun idea. We'll see how smart that plan turns out to be.
Anyway, there's a new post up at Support for Special Needs. And while I like to think you're actually reading all the posts I write over there ("Another click? Screw this, my hand hurts…"), I hope you'll make a special effort to go see this one. Not because it's unusually wonderful or important, but because it feels personal and a little raw for me. I guess I just want you to read this one a little more than usual.
Anyway, there's a new post up at Support for Special Needs. And while I like to think you're actually reading all the posts I write over there ("Another click? Screw this, my hand hurts…"), I hope you'll make a special effort to go see this one. Not because it's unusually wonderful or important, but because it feels personal and a little raw for me. I guess I just want you to read this one a little more than usual.
April 2, 2012
Little Monster
Happy Monday, and welcome to April! (I'm not sure why I just welcomed you to April. Is it supposed to be any better than March?) There's a new post up at Support for Special Needs. It's a topic I've touched on before around here, but in the aftermath of the whole discussion in other online venues of whether or not it is appropriate to "hate" a child's disability, I thought it would be a good time to revisit the whole "monster" metaphor, particular with a different crowd over there. There are always new people eager to have something at which to shake their angry little fists, after all.
In a brief followup to last week's post, we've gotten our hands on a copy of the Speak4Yourself app that has cause such a kerfluffle in the AAC world. We've all been playing with it over the weekend, and once we've had a chance to fairly evaluate it, I will definitely do a write up.
My initial observations? It is really robust, with a bit of a learning curve. At the same time, it is much less similar to MinSpeak than I thought it would be, and I'm less convinced than before that the lawsuit by Semantic Compaction and PRC is going to gain very much traction. There are a few features I'd like to see (although in all fairness, I probably just haven't found them yet), and some (such as the seamless interaction with texting apps) that I think are brilliant.
So more soon on that.
In a brief followup to last week's post, we've gotten our hands on a copy of the Speak4Yourself app that has cause such a kerfluffle in the AAC world. We've all been playing with it over the weekend, and once we've had a chance to fairly evaluate it, I will definitely do a write up.
My initial observations? It is really robust, with a bit of a learning curve. At the same time, it is much less similar to MinSpeak than I thought it would be, and I'm less convinced than before that the lawsuit by Semantic Compaction and PRC is going to gain very much traction. There are a few features I'd like to see (although in all fairness, I probably just haven't found them yet), and some (such as the seamless interaction with texting apps) that I think are brilliant.
So more soon on that.
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| art by Edith Meyer, 2007 |
March 26, 2012
The Iceman Cometh, with his Legal Team
Today's post at Support for Special Needs touches on the uneasy state of affairs between AAC device makers and app developers trying to utilize tech advances in consumer electronics to further their craft.
Things have taken a turn for the ugly. Well, uglier, anyway.
(Bonus: Schuyler gave me a quote, typed directly into the doc on the computer. She did a great job of saying exactly what she wanted to say, about how she feels about her current device and what she wants to do in the future. I'm really proud of her.)
Also, the ever-cool Jen Lee Reeves, with whom I spoke on a panel at SxSW, is giving away a signed copy of my book. Go check out her post, especially the parts where she nice stuff about me. Because you know me. I like that.
March 19, 2012
Inscrutable World
I know, I've been quiet all week. I think I picked up a bad case of Hipster Pox at SxSW, so I've spent the week mostly coughing. I'm getting really good at it.
Anyway, there's a new post at Support for Special Needs. It's sort of about soccer, but not really.
Vague enough for you? My work here is done.
Anyway, there's a new post at Support for Special Needs. It's sort of about soccer, but not really.
Vague enough for you? My work here is done.
March 12, 2012
The Shiny Future
It's Monday, which this time means I'm at SXSW in Austin (the Prodigal Son returns!) speaking on a panel, and also that there's a new post over at Support for Special Needs. Are these two things related? Maybe a little.
If you're in Austin today, it's not too late to come say "Hi, Rob!" or "You suck, Rob!" or whatever. I'm cool either way.
If you're in Austin today, it's not too late to come say "Hi, Rob!" or "You suck, Rob!" or whatever. I'm cool either way.
March 6, 2012
Spread it. End it. That's all.
You'll note that I don't say "you should stop using that word". That's because I can't tell you whether or not you should stop. I can't choose your vocabulary for you any more than anyone else can, and I don't think I have the right to try.
But I hope you'll think about it.
To that end, I hope you'll take a moment to go read the thing I wrote about this topic last May, called "Just a word". And as usual, someone else says it better than I do:
March 5, 2012
Schuyler's Dragon
I just found out that someone bought the rights to publish Schuyler's Monster in Chinese.
How cool is that?
Schuyler has declared it "super cool". So there you go.
How cool is that?
Schuyler has declared it "super cool". So there you go.
Puppies and Cookies are Swell
It's Monday, so it's time for a new post over at Support for Special Needs. This one should cause considerably less gnashing of teeth and scented hankies lifted to worried brows than last Monday. You can decide for yourself if that's a good thing. I think it probably is.
Also, a reminder to SXSW attendees. The panel I'm participating in will take place a week from today. Well-wishers and hecklers are encouraged to come say hi. (If you're a heckler, stick to bugging me. Jen and Kate won't stand for your shenanigans OR your tomfoolery.)
Also, a reminder to SXSW attendees. The panel I'm participating in will take place a week from today. Well-wishers and hecklers are encouraged to come say hi. (If you're a heckler, stick to bugging me. Jen and Kate won't stand for your shenanigans OR your tomfoolery.)
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| Schuyler and Maxie, in 2007 |
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