My father died twenty years ago today.
It's strange to think about it now, especially as I hurriedly run around packing for a trip today. I used to be acutely aware of this date every year. For the first few years, I would actually make the drive out to Robert Lee, Texas, thenothing little West Texas town where he's buried. It's been a long time since I've been out there, though. After I moved away from Texas, I think in some ways I moved away from some of my grief as well. It's one of those boxes I never entirely unpacked once I returned.
Even now, I'm not sure that "grief" is the right word. We had a complicated relationship, to put it mildly. When he died, my father left a lot of family strife and unanswered questions; he suffered a massive heart aneurysm and was almost certainly dead before he hit the ground. We were all subsequently denied any sort of dramatic, confessional death bed scene, but honestly, I don't know that it would have been any easier if he'd lingered. My father wasn't very good at expressing his emotions, and he was especially bad at processing guilt. I suppose in some ways, I am, too.
I could write so much about my father, but I don't think I'm even going to try today. I'll simply say that I'm not sure that I miss him exactly, but I miss having the feeling and the possibility that there might be a day in the future where he and I could figure things out, and I might know for certain, in a way that I absolutely don't know now and maybe never have known in my life, whether or not my father loved me.
If I only get one thing right with Schuyler, it will be that she will never have to wonder such a thing.
March 25, 2010
March 19, 2010
Summer Monster Killers Club
As part of my fancy pants authority duties, I serve on the Board of Trustees for the Foundation for Children with Microcephaly. This makes more sense once you know that Microcephaly and Polymicrogyria are closely related neurological conditions. In fact, the Foundation's mission has been expanded to encompass other related disorders. Sort of a brain monster family reunion.
Anyway, as part of my work on the board, I've been sending out the following email. It occurred to me that the kind of sponsorship that the Foundation is looking for might be of interest to people reading here, rather than just corporations.
This is a good cause, a VERY good cause, and if it sounds like something you think you might be interested in, I hope you'll email me.
My name is Robert Rummel-Hudson, and I'm the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). I'm also a member of the Board of Trustees for the Foundation for Children with Microcephaly, a nonprofit organization dedicated to helping children who have been diagnosed with Microcephaly (and other closely-related neurological disorders such as Lissencephaly and Polymicrogyria) to progress, thrive and succeed in life. The organization helps families acquire necessities and services for their children, and is devoted to raising awareness of these under-recognized disorders and participating in the research that may one day bring relief to these children.
Last summer, I was honored to speak on the subject of Augmentative and Alternative Communication at the 2nd Annual Microcephaly Convention. I've presented at a number of different disability and assistive technology conferences in the past several years, but none has affected me quite so deeply as this one. The families I met changed my perspective on my own work and left me filled with a renewed purpose. When I was asked to join the Board of Trustees, I accepted immediately.
The Microcephaly Convention has served as more than a place for families to meet and find support and empathy. Each summer, the leading doctors and researchers in the fields of neurological genetic disorders meet with these families, giving support and often providing answers and insights that have eluded them for years. It presents a unique opportunity for families of children with these neurological disorders. The Foundation for Children with Microcephaly is the only 501(c)(3) nonprofit organization in the United States dedicated to helping children and adults diagnosed with Microcephaly, Polymicrogyria, Lissencephaly and other related neurological disorders
As a nonprofit organization, the Foundation for Children with Microcephaly depends on the generosity of public, private and corporate contributions. I hope that you will recognize the importance of the work being done by the Foundation for Children with Microcephaly and will be interested in helping to sponsor this summer's convention. A financial sponsorship from your company will make a tremendous difference in the lives of families of children afflicted with these neurological disorders.
For the past two summers, this convention has been organized as a labor of love by families who themselves have searched for answers and support. In my own advocacy, I haven't seen anything quite like it, and I hope you'll choose to be a part of our work. Please take a look at the website (www.childrenwithmicro.org) to learn more about the Foundation.
Thank you for your time. I look forward to hearing from you, and I hope you'll choose to join our team.
Robert Rummel-Hudson
Trustee, Foundation for Children with Microcephaly
www.childrenwithmicro.org
Anyway, as part of my work on the board, I've been sending out the following email. It occurred to me that the kind of sponsorship that the Foundation is looking for might be of interest to people reading here, rather than just corporations.
This is a good cause, a VERY good cause, and if it sounds like something you think you might be interested in, I hope you'll email me.
My name is Robert Rummel-Hudson, and I'm the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). I'm also a member of the Board of Trustees for the Foundation for Children with Microcephaly, a nonprofit organization dedicated to helping children who have been diagnosed with Microcephaly (and other closely-related neurological disorders such as Lissencephaly and Polymicrogyria) to progress, thrive and succeed in life. The organization helps families acquire necessities and services for their children, and is devoted to raising awareness of these under-recognized disorders and participating in the research that may one day bring relief to these children.
Last summer, I was honored to speak on the subject of Augmentative and Alternative Communication at the 2nd Annual Microcephaly Convention. I've presented at a number of different disability and assistive technology conferences in the past several years, but none has affected me quite so deeply as this one. The families I met changed my perspective on my own work and left me filled with a renewed purpose. When I was asked to join the Board of Trustees, I accepted immediately.
The Microcephaly Convention has served as more than a place for families to meet and find support and empathy. Each summer, the leading doctors and researchers in the fields of neurological genetic disorders meet with these families, giving support and often providing answers and insights that have eluded them for years. It presents a unique opportunity for families of children with these neurological disorders. The Foundation for Children with Microcephaly is the only 501(c)(3) nonprofit organization in the United States dedicated to helping children and adults diagnosed with Microcephaly, Polymicrogyria, Lissencephaly and other related neurological disorders
As a nonprofit organization, the Foundation for Children with Microcephaly depends on the generosity of public, private and corporate contributions. I hope that you will recognize the importance of the work being done by the Foundation for Children with Microcephaly and will be interested in helping to sponsor this summer's convention. A financial sponsorship from your company will make a tremendous difference in the lives of families of children afflicted with these neurological disorders.
For the past two summers, this convention has been organized as a labor of love by families who themselves have searched for answers and support. In my own advocacy, I haven't seen anything quite like it, and I hope you'll choose to be a part of our work. Please take a look at the website (www.childrenwithmicro.org) to learn more about the Foundation.
Thank you for your time. I look forward to hearing from you, and I hope you'll choose to join our team.
Robert Rummel-Hudson
Trustee, Foundation for Children with Microcephaly
www.childrenwithmicro.org
March 9, 2010
March 2, 2010
Mean: A Play in Two Acts
ACT I
Julie picks up Schuyler from school. Schuyler is in a very sad mood, not making eye contact and seeming to be on the verge of tears.
Julie: Schuyler, what's wrong?
Schuyler: I'm sad.
Julie: Why are you sad?
Schuyler: Because you think I'm a loser.
Julie: No I don't! Schuyler, where did you hear that word?
Schuyler: Jackie called me a loser today.
(Jackie is a girl in Schuyler's class who has said things about her before, including the worst thing that you can say to Schuyler, who has the biggest heart in the entire world: "You're not my friend.")
---
Later, talking to Schuyler about the incident.
Rob: Did Jackie call you a loser at school?
Schuyler (sadly): Yeah.
Rob: You know you're not a loser, don't you?
Schuyler: Yes, Daddy.
Rob: We're going to Nashville in a couple of weeks so that a bunch of really smart people can hear all about you and how you use Pinkessa to talk. Do you think they want to come learn about you and meet you because they think you're a loser?
Schuyler: No.
Rob: No, they think you're the coolest, and so do I. So does anyone who matters. Do you think Jackie's opinion matters? It doesn't. She's just trying to be mean. Anyone can say mean things. Don't let it bother you next time.
Schuyler pauses and smiles, then she waves her hand in front of her face and laughs.
Rob: What? She smells?
Schuyler laughs and nods.
Rob: What does she smell like?
Schuyler points at her ass and laughs hard.
Rob: She smells like butt? Like a monkey butt?
Schuyler: Yeah!
We get Pinkessa so Schuyler can tell me, "Jackie smells like a monkey's butthole." I help her with the spelling. I'm not sure if this makes me a good or terrible father. Julie looks at me disapprovingly.
Julie: You're going to get her in trouble.
Rob: If she gets sent home for saying something, I'll punish her with ice cream.
Schuyler returns to school the next day, and for the rest of the week. She does not tell Jackie that she smells like a monkey's butthole. Sometimes I think she really does get when I'm kidding.
END ACT ONE
ACT TWO
Julie takes Schuyler to see a movie that they both want to see, but which I think sounds like the kind of thing that Jack Bauer would show captive terrorists to tell him where the bomb is hidden, so I pass. While standing in line, Schuyler sees two girls, one of whom she knows from school. The mother of the girl also seems to know Schuyler, or at least who she is, and tries to engage her with complicated questions before chatting up Julie.
As they talk, Julie hears the girl from Schuyler's school talking to her friend, who attends a school in Frisco, not Plano.
Plano Girl (giggling to her friend): Watch this. (to Schuyler) Hey, Schuyler! Say something! Talk for us!
When Schuyler says something, the girl laughs at her. The Frisco girl doesn't laugh, to her credit, so the Plano girl says it again. This time the girl's mother hears her.
Plano Mom: That's enough of that!
Julie excuses herself and pulls Schuyler away. After they enter the theater, Schuyler sees her "friend" sitting a few rows down and tells Julie that she wants to sit with them.
Julie: No, Schuyler. They came to have an afternoon together, and they didn't invite us to join them. We don't invite ourselves to other people's get-togethers. That's not polite.
She neglects to mention the fact that the little girl is horrible.
Schuyler protests before slumping down in her seat in a full-blown sulk. Finally she looks at Julie with a frown.
Schuyler: You're mean.
Julie: I know, I'm sorry.
Julie doesn't tell Schuyler the truth, that she's not mean, but rather she's protecting her from a mean girl, another one, and just one of the many who will come along in the future. Schuyler is too innocent to recognize that the girl was being mean to her, and Julie would like to keep it that way forever.
Which is, of course, impossible. But we try. God knows we try, knowing that we'll lose one day. Because when a girl calls Schuyler a loser, it breaks her heart. But when a kid mocks Schuyler because of her monster and she doesn't even see it, and still thinks the girl is her friend, well, when that happens, ours are the hearts that break.
Schuyler will figure it out soon enough. And then there'll be broken hearts enough to go around. Plenty for everyone.
END ACT TWO
Julie picks up Schuyler from school. Schuyler is in a very sad mood, not making eye contact and seeming to be on the verge of tears.
Julie: Schuyler, what's wrong?
Schuyler: I'm sad.
Julie: Why are you sad?
Schuyler: Because you think I'm a loser.
Julie: No I don't! Schuyler, where did you hear that word?
Schuyler: Jackie called me a loser today.
(Jackie is a girl in Schuyler's class who has said things about her before, including the worst thing that you can say to Schuyler, who has the biggest heart in the entire world: "You're not my friend.")
---
Later, talking to Schuyler about the incident.
Rob: Did Jackie call you a loser at school?
Schuyler (sadly): Yeah.
Rob: You know you're not a loser, don't you?
Schuyler: Yes, Daddy.
Rob: We're going to Nashville in a couple of weeks so that a bunch of really smart people can hear all about you and how you use Pinkessa to talk. Do you think they want to come learn about you and meet you because they think you're a loser?
Schuyler: No.
Rob: No, they think you're the coolest, and so do I. So does anyone who matters. Do you think Jackie's opinion matters? It doesn't. She's just trying to be mean. Anyone can say mean things. Don't let it bother you next time.
Schuyler pauses and smiles, then she waves her hand in front of her face and laughs.
Rob: What? She smells?
Schuyler laughs and nods.
Rob: What does she smell like?
Schuyler points at her ass and laughs hard.
Rob: She smells like butt? Like a monkey butt?
Schuyler: Yeah!
We get Pinkessa so Schuyler can tell me, "Jackie smells like a monkey's butthole." I help her with the spelling. I'm not sure if this makes me a good or terrible father. Julie looks at me disapprovingly.
Julie: You're going to get her in trouble.
Rob: If she gets sent home for saying something, I'll punish her with ice cream.
Schuyler returns to school the next day, and for the rest of the week. She does not tell Jackie that she smells like a monkey's butthole. Sometimes I think she really does get when I'm kidding.
END ACT ONE
ACT TWO
Julie takes Schuyler to see a movie that they both want to see, but which I think sounds like the kind of thing that Jack Bauer would show captive terrorists to tell him where the bomb is hidden, so I pass. While standing in line, Schuyler sees two girls, one of whom she knows from school. The mother of the girl also seems to know Schuyler, or at least who she is, and tries to engage her with complicated questions before chatting up Julie.
As they talk, Julie hears the girl from Schuyler's school talking to her friend, who attends a school in Frisco, not Plano.
Plano Girl (giggling to her friend): Watch this. (to Schuyler) Hey, Schuyler! Say something! Talk for us!
When Schuyler says something, the girl laughs at her. The Frisco girl doesn't laugh, to her credit, so the Plano girl says it again. This time the girl's mother hears her.
Plano Mom: That's enough of that!
Julie excuses herself and pulls Schuyler away. After they enter the theater, Schuyler sees her "friend" sitting a few rows down and tells Julie that she wants to sit with them.
Julie: No, Schuyler. They came to have an afternoon together, and they didn't invite us to join them. We don't invite ourselves to other people's get-togethers. That's not polite.
She neglects to mention the fact that the little girl is horrible.
Schuyler protests before slumping down in her seat in a full-blown sulk. Finally she looks at Julie with a frown.
Schuyler: You're mean.
Julie: I know, I'm sorry.
Julie doesn't tell Schuyler the truth, that she's not mean, but rather she's protecting her from a mean girl, another one, and just one of the many who will come along in the future. Schuyler is too innocent to recognize that the girl was being mean to her, and Julie would like to keep it that way forever.
Which is, of course, impossible. But we try. God knows we try, knowing that we'll lose one day. Because when a girl calls Schuyler a loser, it breaks her heart. But when a kid mocks Schuyler because of her monster and she doesn't even see it, and still thinks the girl is her friend, well, when that happens, ours are the hearts that break.
Schuyler will figure it out soon enough. And then there'll be broken hearts enough to go around. Plenty for everyone.
END ACT TWO
February 16, 2010
Nashville stalkers, get your chloroform ready
Augmentative and Alternative Communication (AAC)
Workshop at Vanderbilt University
Nashville, Tennessee
Presentation: Friday, March 26, 2010, 6 - 7:30 p.m.
A Parent’s Journey with AAC
Location: Mayborn Room 204, Peabody College
Keynote Speaker: Robert Rummel-Hudson
Author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter
Open to everyone. No fee. Registration required. May attend presentation without attending Saturday’s Workshop.
- 6:00-6:05 - Welcome
- 6:05-6:45 - Robert’s journey
- 6:45-7:25 - Questions
- 7:25-7:30 - Closing remarks
-----
Workshop: Saturday, March 27, 2010, 9 a.m. - 4:30 p.m.
We Dance, We Sing, We Do All Kinds of Things | Using Assistive Technology with Young Children with Multiple Disabilities
Location: Room 8380 Medical Center East, South Tower, Vanderbilt Bill Wilkerson Center
Karen Casey, M.S., CCC-SLP (over 25 years of experience with assistive technology)
This workshop will cover a wide range of strategies and easy-to-use communication systems, including low to high assistive technology options, designed to increase communication opportunities for children with multiple disabilities.
For speech-language pathologists, special educators, other professionals in related fields, students, parents, and family members. * May attend workshop without attending Friday’s presentation. This workshop will be offered for .6 ASHA CEU’s (intermediate level; professional area).
Early Bird Registration (by March 15): $175 professionals, $50 students/parents, Additional $25 for late registration. $125 Group Rate for 2 or more persons from the same agency or organization. * Workshop fee includes: lunch/breaks, two CDs of instructional resources, and make-and-take materials.
Tomorrow Monsters
There's an issue that has been lurking in the future, like so many of Schuyler's do.
Julie and I worry about the future a great deal with Schuyler, and we always have. Part of that fear experience is just one of the joys of parenthood, I suspect. As watchers and protectors of our children, we're always waiting, always watching for the next Big Bad Thing that will step out of the bushes and harm our living, walking hearts. That's what children are, I've been told, they are our hearts set free into Life, walking around and challenging this grand rough world to do its very worst. And as parents, we watch helplessly, knowing that if the worst happens, it's our hearts that will die, too. It's the part of parenting that no one explains beforehand very well, because it's hard to talk about, and besides, you wouldn't understand anyway. You get it only when your own chaotic heart takes reckless flight in dirty tennis shoes.
So the future. Schuyler's future isn't the bleak thing we were led to believe it would be, by doctors spinning worst case scenarios and teachers afraid to admit that they didn't know what they were talking about and afraid to offer hope instead of fear. Schuyler's present is good. It's not perfect, but it's better than we thought it would ever be, and certainly better than a lot of broken children, maybe even most of them. Schuyler's future is crammed with promise, but it's a murky thing that neither I not Julie nor anyone else can really see.
So, bereft of concrete obstacles, we identify future monsters instead.
One of the scariest of those future monsters is middle school.
Well, I think we all remember middle school. I actually attended junior high school, grades 7 through 9, before ending up in high school for the last three years, so my memories are a little different, but still. I also taught trombone students for a long time, mostly middle school, and the thing I remember the most is how weird they all were. It's a wild age, when kids actually start to become the people they'll be for the rest of their lives, but they haven't yet been beaten into the grooves and the niches and the cliques that high school enforces. They are weird kids, and they're just starting to figure that out, so it's a really interesting but dangerous time for them.
We've been fearing middle school, in part for that reason, because even among the weird kids, Schuyler brings a lot of extra weird to the table. It's not a good age to suddenly be different. Just the thought of it makes me a little sick to my stomach.
The greater uncertainty for us, however, has been of how exactly Schuyler's AAC class presence was going to extend into middle school and high school. That's been the plan for a while now, according to her school. As her pilot class progressed through the system, the AAC program would grow with them, always giving them a home base of support, all the way through graduation. Our biggest concern has always been how this plan was going to be implemented exactly.
Today, we got an answer. It won't be.
When Schuyler finishes fifth grade (next year, unless she suffers some catastrophic academic failure), she will leave her school and her AAC class and will start middle school at her home campus. She will do so without an AAC class to go to, without (as far as I know) any permanent place outside of her mainstream classes where she'll be supported by anyone trained in assistive technology. An assistive technology professional, one of Schuyler's former teachers most likely, will travel from campus to campus in this huge school district, and that will be it. As is the case with so many mainstreaming situations around the country, in slightly less than a year and a half, Schuyler will learn to swim, or she will sink.
And suddenly, the future has a monster whom we can see much more clearly. And it's bigger than we thought it would be.
I'm going to be honest here. We're disappointed, bitterly disappointed, but we're not entirely blindsided by this decision. When the original plan was presented, I wondered at the time whether it was one that was going to be realistic. From the school district's perspective, they are continuing to support a program that gets to these kids at the most crucial age, and they're right. Furthermore, if I'm going to continue to beat the drum on behalf of inclusion, then this is where I get to put my money where my mouth is, I guess. And I know, all too well, that receiving even this much AAC support and instruction is wildly beyond what the vast majority of these kids receive in other schools and other communities. The Plano schools have gone above and beyond for Schuyler and her friends, and I will never diminish that or lose sight of exactly how much of a difference it has made in her life. We are extremely grateful for everything they've done and continue to do for Schuyler, and we're hopeful that the Plano school district's commitment to our daughter and her friends will continue to be strong.
But the future just got murky again, and that makes me feel sick inside. For the past ten years, and particularly since the diagnosis, Julie and I have worked hard to provide Schuyler with consistency and support. We've both sacrificed more than perhaps anyone realizes in order to make that happen. And yet, I have failed Schuyler, time and time again. Sometimes in small ways, and other times in monumental, broad strokes of stupidity and selfishness. I have considered acts of extreme selfishness and pain and betrayal that have left me now feeling evil and haunted and guilt-ridden. I've been both a good and a horrible father, but I try to do my best, and when I open my eyes and truly see what's at stake, I like to think that I find the path again, even if I've wandered far into the woods.
Julie and I have given a lot, maybe given our all, in order to give Schuyler a shot, and when we moved to Plano, we thought (perhaps foolishly, as all parents of the broken do from time to time) that we'd found the answer, and that it would sustain her through her school years. Now, I just don't know. Julie asked me tonight if this meant that we might have to move again. I said I didn't know. Honestly, I don't know where we'd go if middle school turns out to be a disaster for Schuyler. Plano schools are among the best in the country, particularly for special education. If they can't take care of her here, then who can?
When I spoke to Schuyler's principal today (a very nice woman who has been among Schuyler's greatest supporters, and who did not seem to enjoy this conversation one bit), she said that Schuyler would have a couple of options. She could finish out fifth grade at her current school in her current program and then start sixth grade with a whole new bunch of kids who haven't spent the past few years getting to know her and who wouldn't immediately understand her very unique set of circumstances. Or she could transition early to her home elementary next year so that she'd get to know some of the kids who would then join her in middle school the next year. That last option sounds sort of awful to me; not only would she lose a year of AAC instruction, but she'd then have to experience changing schools twice in two years.
I asked if it would be possible for Schuyler to transfer to the middle school that her current elementary feeds into so that at least she'd have the same group of friends. It's a possibility, but we'll have to apply for permission to do that, and the middle school may already be closed to transfers. She'd no longer be eligible for the transportation that she now receives, but we could deal with that. The sooner we can walk away from the stigma of the short bus is probably the better for her.
None of the answers feel adequate. Selfishly, I want the school to make good on its admittedly far-fetched promise to take care of Schuyler and her classmates, to give them a place to continue their AAC training, of course, but also to give them a home perch to fly back to when things get daunting. Because they WILL be daunting. That much is certain.
I believe in Schuyler more than I believe in God or Love, but I believe in monsters, too.
Julie and I worry about the future a great deal with Schuyler, and we always have. Part of that fear experience is just one of the joys of parenthood, I suspect. As watchers and protectors of our children, we're always waiting, always watching for the next Big Bad Thing that will step out of the bushes and harm our living, walking hearts. That's what children are, I've been told, they are our hearts set free into Life, walking around and challenging this grand rough world to do its very worst. And as parents, we watch helplessly, knowing that if the worst happens, it's our hearts that will die, too. It's the part of parenting that no one explains beforehand very well, because it's hard to talk about, and besides, you wouldn't understand anyway. You get it only when your own chaotic heart takes reckless flight in dirty tennis shoes.
So the future. Schuyler's future isn't the bleak thing we were led to believe it would be, by doctors spinning worst case scenarios and teachers afraid to admit that they didn't know what they were talking about and afraid to offer hope instead of fear. Schuyler's present is good. It's not perfect, but it's better than we thought it would ever be, and certainly better than a lot of broken children, maybe even most of them. Schuyler's future is crammed with promise, but it's a murky thing that neither I not Julie nor anyone else can really see.
So, bereft of concrete obstacles, we identify future monsters instead.
One of the scariest of those future monsters is middle school.
Well, I think we all remember middle school. I actually attended junior high school, grades 7 through 9, before ending up in high school for the last three years, so my memories are a little different, but still. I also taught trombone students for a long time, mostly middle school, and the thing I remember the most is how weird they all were. It's a wild age, when kids actually start to become the people they'll be for the rest of their lives, but they haven't yet been beaten into the grooves and the niches and the cliques that high school enforces. They are weird kids, and they're just starting to figure that out, so it's a really interesting but dangerous time for them.
We've been fearing middle school, in part for that reason, because even among the weird kids, Schuyler brings a lot of extra weird to the table. It's not a good age to suddenly be different. Just the thought of it makes me a little sick to my stomach.
The greater uncertainty for us, however, has been of how exactly Schuyler's AAC class presence was going to extend into middle school and high school. That's been the plan for a while now, according to her school. As her pilot class progressed through the system, the AAC program would grow with them, always giving them a home base of support, all the way through graduation. Our biggest concern has always been how this plan was going to be implemented exactly.
Today, we got an answer. It won't be.
When Schuyler finishes fifth grade (next year, unless she suffers some catastrophic academic failure), she will leave her school and her AAC class and will start middle school at her home campus. She will do so without an AAC class to go to, without (as far as I know) any permanent place outside of her mainstream classes where she'll be supported by anyone trained in assistive technology. An assistive technology professional, one of Schuyler's former teachers most likely, will travel from campus to campus in this huge school district, and that will be it. As is the case with so many mainstreaming situations around the country, in slightly less than a year and a half, Schuyler will learn to swim, or she will sink.
And suddenly, the future has a monster whom we can see much more clearly. And it's bigger than we thought it would be.
I'm going to be honest here. We're disappointed, bitterly disappointed, but we're not entirely blindsided by this decision. When the original plan was presented, I wondered at the time whether it was one that was going to be realistic. From the school district's perspective, they are continuing to support a program that gets to these kids at the most crucial age, and they're right. Furthermore, if I'm going to continue to beat the drum on behalf of inclusion, then this is where I get to put my money where my mouth is, I guess. And I know, all too well, that receiving even this much AAC support and instruction is wildly beyond what the vast majority of these kids receive in other schools and other communities. The Plano schools have gone above and beyond for Schuyler and her friends, and I will never diminish that or lose sight of exactly how much of a difference it has made in her life. We are extremely grateful for everything they've done and continue to do for Schuyler, and we're hopeful that the Plano school district's commitment to our daughter and her friends will continue to be strong.
But the future just got murky again, and that makes me feel sick inside. For the past ten years, and particularly since the diagnosis, Julie and I have worked hard to provide Schuyler with consistency and support. We've both sacrificed more than perhaps anyone realizes in order to make that happen. And yet, I have failed Schuyler, time and time again. Sometimes in small ways, and other times in monumental, broad strokes of stupidity and selfishness. I have considered acts of extreme selfishness and pain and betrayal that have left me now feeling evil and haunted and guilt-ridden. I've been both a good and a horrible father, but I try to do my best, and when I open my eyes and truly see what's at stake, I like to think that I find the path again, even if I've wandered far into the woods.
Julie and I have given a lot, maybe given our all, in order to give Schuyler a shot, and when we moved to Plano, we thought (perhaps foolishly, as all parents of the broken do from time to time) that we'd found the answer, and that it would sustain her through her school years. Now, I just don't know. Julie asked me tonight if this meant that we might have to move again. I said I didn't know. Honestly, I don't know where we'd go if middle school turns out to be a disaster for Schuyler. Plano schools are among the best in the country, particularly for special education. If they can't take care of her here, then who can?
When I spoke to Schuyler's principal today (a very nice woman who has been among Schuyler's greatest supporters, and who did not seem to enjoy this conversation one bit), she said that Schuyler would have a couple of options. She could finish out fifth grade at her current school in her current program and then start sixth grade with a whole new bunch of kids who haven't spent the past few years getting to know her and who wouldn't immediately understand her very unique set of circumstances. Or she could transition early to her home elementary next year so that she'd get to know some of the kids who would then join her in middle school the next year. That last option sounds sort of awful to me; not only would she lose a year of AAC instruction, but she'd then have to experience changing schools twice in two years.
I asked if it would be possible for Schuyler to transfer to the middle school that her current elementary feeds into so that at least she'd have the same group of friends. It's a possibility, but we'll have to apply for permission to do that, and the middle school may already be closed to transfers. She'd no longer be eligible for the transportation that she now receives, but we could deal with that. The sooner we can walk away from the stigma of the short bus is probably the better for her.
None of the answers feel adequate. Selfishly, I want the school to make good on its admittedly far-fetched promise to take care of Schuyler and her classmates, to give them a place to continue their AAC training, of course, but also to give them a home perch to fly back to when things get daunting. Because they WILL be daunting. That much is certain.
I believe in Schuyler more than I believe in God or Love, but I believe in monsters, too.
February 9, 2010
Not less
I've posted another essay on Hopeful Parents. This time I share some thoughts on the new HBO film Temple Grandin.
So, you know, go check it out if you are so inclined.
So, you know, go check it out if you are so inclined.
February 4, 2010
January 31, 2010
Dispatch from Beleaguered Tokyo
First of all, the CEO of Macmillan, John Sargent, has responded to the Amazon brouhaha. (When I see that word "brouhaha", I imagine it spoken with rolled R's and bugged eyes.) So the rumble appears to be on. (More good observations from John Scalzi, Cory Doctorow, the L.A. Times, and Scalzi again.)
For those of you who aren't following this, here's the quick and dirty version. (Not actually all that dirty, sorry.) Along with a number of other houses, Macmillan (whose imprints include Straus & Giroux, Tor, and my publisher, St. Martin's Press) has been pushing for Amazon to change their pricing structure for electronic books from a flat charge of $9.99 (an artificial price point, I believe, intended to drive sales of its electronic reader, the Kindle) to one set by the publishers themselves, giving them the option of charging up to $15. Amazon's response has been along the lines of "Or what? You're going to take your business to some other gigantic, popular company and THEIR ebook reader? Let us know how that works out for you."
This week, you might have heard that Apple released the awkwardly-named but undeniably snazzy iPad, and along with it announced their new iBooks store. In doing so, they signed agreements with a number of the biggest publishing houses, including Macmillan. Those agreements apparently grant these publishers more pricing flexibility. The New York Times picks it up from there:
That's right. On Friday, Amazon pulled every single title published by Macmillan, including mine, from its site. The titles are still listed, but there's no way to buy them except via third party vendors. (This only applies to Amazon's US site, and also doesn't appear to include overstock sales like the one I mentioned the other day.)
As to why Amazon is doing this, especially given the fact that the removal doesn't just affect Kindle editions but all print properties as well, I can only assume that the company is operating under a business model best encapsulated as "No, fuck YOU."
I'm not going to pretend that all has been smooth sailing between St. Martin's Press and myself where ebooks are concerned. A number of you have written to me asking why Schuyler's Monster was only available for the Kindle for a brief time before being removed. Apparently the original scan from the company was fuzzy and it was pulled for quality control. But despite my repeated titty-baby whining, St. Martin's has been slow to replace that scan, and at this time, Schuyler's Monster is unavailable as an electronic book in any format. I've been extremely frustrated by this over the past several months, and so I'm not exactly filled with unconditional love for SMP's digital division at the moment. That's just my anecdotal experience, but it's the only one I have to go on.
But in this clash of the Big Companies, only one of them is intentionally and cynically screwing with the livelihood of authors. Only Amazon has shown such callous disregard for the writers who make their whole industry possible. I've twice visited the offices of St. Martin's Press, and it's not some fancy shining hub of cold, calculated commerce. Up on the top floors of the Flatiron Building in New York, you'll find offices full of manuscripts piled on every available flat surface, and you'll also find creative people (mostly young) who run around frantically, making books happen. And even in the face of the scary-boo economic factors crippling the industry, these folks are giddy about their work. They're book nerds, operating on a very thin margin, and every author I've ever talked to who has been published by them has expressed the same thing, and it's the same thing I've felt as well. Macmillan takes care of its people.
This whole situation just stinks, and I have no idea how long it'll last. Not long, I suspect, hopefully just a few days just to see if Macmillan blinks. I hope they don't. And I hope they're not the only publisher to demand a little free market behavior from Amazon, either. Amazon is a great company and God knows a huge number of the trees I've killed have gone through their warehouses on the way to readers like you. (Eh, trees. Fuck 'em.) But I believe Amazon is acting like a petulant bully in this instance, and the people who are being hurt most directly are consumers and authors. Being both, I don't like it, not one bit.
This would be a much worse situation for me personally if my book had only recently been released, and I recognize that. But still, I can tell you what it feels like, being the author of one of the books that just lost one of its largest outlets for sales, all because two big companies are squabbling over money and the future of the ebook trade.
For those of you who aren't following this, here's the quick and dirty version. (Not actually all that dirty, sorry.) Along with a number of other houses, Macmillan (whose imprints include Straus & Giroux, Tor, and my publisher, St. Martin's Press) has been pushing for Amazon to change their pricing structure for electronic books from a flat charge of $9.99 (an artificial price point, I believe, intended to drive sales of its electronic reader, the Kindle) to one set by the publishers themselves, giving them the option of charging up to $15. Amazon's response has been along the lines of "Or what? You're going to take your business to some other gigantic, popular company and THEIR ebook reader? Let us know how that works out for you."
This week, you might have heard that Apple released the awkwardly-named but undeniably snazzy iPad, and along with it announced their new iBooks store. In doing so, they signed agreements with a number of the biggest publishing houses, including Macmillan. Those agreements apparently grant these publishers more pricing flexibility. The New York Times picks it up from there:
Macmillan offered Amazon the opportunity to buy Kindle editions on the same “agency” model as it will sell e-books to Apple for the iPad. Under this model, the publisher sets the consumer book price and takes 70 percent of each sale, leaving 30 percent to the retailer. Macmillan said Amazon could continue to buy e-books under its current wholesale model, paying the publisher 50 percent of the hardcover list price while pricing the e-book at any level Amazon chooses, but that Macmillan would delay those e-book editions by seven months after hardcover release. Amazon’s removal of Macmillan titles on Friday appears to be a direct reaction to that.
That's right. On Friday, Amazon pulled every single title published by Macmillan, including mine, from its site. The titles are still listed, but there's no way to buy them except via third party vendors. (This only applies to Amazon's US site, and also doesn't appear to include overstock sales like the one I mentioned the other day.)
As to why Amazon is doing this, especially given the fact that the removal doesn't just affect Kindle editions but all print properties as well, I can only assume that the company is operating under a business model best encapsulated as "No, fuck YOU."
I'm not going to pretend that all has been smooth sailing between St. Martin's Press and myself where ebooks are concerned. A number of you have written to me asking why Schuyler's Monster was only available for the Kindle for a brief time before being removed. Apparently the original scan from the company was fuzzy and it was pulled for quality control. But despite my repeated titty-baby whining, St. Martin's has been slow to replace that scan, and at this time, Schuyler's Monster is unavailable as an electronic book in any format. I've been extremely frustrated by this over the past several months, and so I'm not exactly filled with unconditional love for SMP's digital division at the moment. That's just my anecdotal experience, but it's the only one I have to go on.
But in this clash of the Big Companies, only one of them is intentionally and cynically screwing with the livelihood of authors. Only Amazon has shown such callous disregard for the writers who make their whole industry possible. I've twice visited the offices of St. Martin's Press, and it's not some fancy shining hub of cold, calculated commerce. Up on the top floors of the Flatiron Building in New York, you'll find offices full of manuscripts piled on every available flat surface, and you'll also find creative people (mostly young) who run around frantically, making books happen. And even in the face of the scary-boo economic factors crippling the industry, these folks are giddy about their work. They're book nerds, operating on a very thin margin, and every author I've ever talked to who has been published by them has expressed the same thing, and it's the same thing I've felt as well. Macmillan takes care of its people.
This whole situation just stinks, and I have no idea how long it'll last. Not long, I suspect, hopefully just a few days just to see if Macmillan blinks. I hope they don't. And I hope they're not the only publisher to demand a little free market behavior from Amazon, either. Amazon is a great company and God knows a huge number of the trees I've killed have gone through their warehouses on the way to readers like you. (Eh, trees. Fuck 'em.) But I believe Amazon is acting like a petulant bully in this instance, and the people who are being hurt most directly are consumers and authors. Being both, I don't like it, not one bit.
This would be a much worse situation for me personally if my book had only recently been released, and I recognize that. But still, I can tell you what it feels like, being the author of one of the books that just lost one of its largest outlets for sales, all because two big companies are squabbling over money and the future of the ebook trade.
I feel like a citizen of Tokyo, watching Godzilla and some other monster fighting it out in the streets of my city.
Even if my monster wins, my house still gets squashed.
Even if my monster wins, my house still gets squashed.
UPDATE: Blink! My favorite part is this seriously weird quote from Amazon:
"We want you to know that ultimately, however, we will have to capitulate and accept Macmillan's terms because Macmillan has a monopoly over their own titles, and we will want to offer them to you even at prices we believe are needlessly high for e-books."
Um, I believe the word you're looking for is "copyright".
-----
UPDATE REDUX: John Scalzi sums it all up nicely.
-----
UPDATE CUBED: I'm linking to Scalzi a lot these days; he's been particularly on-target with this issue lately. Today, he looks out for the citizens of my metaphorical Tokyo. Thank you, John. Your fellow authors appreciate it.
-----
UPDATE FINALE: After exactly one week, Amazon has gotten around to restoring the links to Macmillan titles, including Schuyler's Monster. I'm guessing it'll be at least that long before I return the favor. I'll put it on my To Do list. No, really.
January 17, 2010
I bleed the people.
Schuyler was writing sentences using spelling words for a homework assignment the other day. I popped by her computer to see how she was doing. One of the words she had to use was "bleed". She had a sentence on the screen.
"I bleed the people."
When I asked her what she meant, she just laughed, and kept laughing as I tried in vain to get an answer. She eventually changed it to something about bleeding when she lost a tooth, but I don't know, when your little girl writes "I bleed the people", it's hard to let that go. When she embarks on her future as a brutal despot, don't say I didn't warn you.
-----
Schuyler has been such a constant presence in my life for the past ten years that it's hard to remember what my life without her was like. It's strange, thinking that she never heard me play trombone in a performance (something that she should perhaps be grateful for), or that she never met my first wife (again, something... well, you know). The first thirty-two years of my life had no Schuyler in them, and in all the most significant ways, I feel like they were preparatory years.
But in the past ten years, Schuyler has changed, a lot. People who meet her now see a completely different person than the ethereal, sweet but disconnected little girl I described in my book. They probably think I'm a crappy writer, and they may very well be right about that, but it's not because I didn't describe her accurately at the time. She's changed dramatically in the last three or four years. She's growing up, and becoming the person she's going to be.
She's changing still.
Those of you who have met Schuyler and interacted with her for short periods of time might not believe this. Those of you who have spent a little more time with her may have an inkling of what I'm talking about. She's always been a happy kid, friendly to a fault and energetic to the point of manic, but for the past few months, maybe as long as half a year or so, Schuyler has had occasional but intense lows. She'll start crying for no apparent reason, particularly when I'm away on trips or at work late. She's always tested Julie in different ways from myself, and I suppose that's normal. But in these past few months, she's been sad, sometimes hysterically so. Recently, I've gotten to witness more of it myself, rather than just hearing about it.
Schuyler just turned ten; a few weeks ago, we bought her first training bras. (Yeah, you can imagine how well I took that particular milestone.) As her behavior became more erratic, I think we chalked it up to normal, hormonal changes. But in the past couple of months, and particular the past few weeks, the cloud over Schuyler's mood has darkened. Her emotional state, previously unflappable, has become more tenuous, even sensitive. Perhaps this is what most of you have dealt with in your own children, but it's new to us.
Sometimes when we asked her why she was crying, she would bring up some injury or slight from a classmate, but often these were from days before. I don't believe she was trying to hide anything from us. I think that she was grasping for an answer, trying to reach back to something that made sense, to herself as much as to us.
I don't know why it never occurred to me, of all people, that something a little harder than pre-adolescence might have been at work. The little red flag didn't pop up until I asked her why she was so sad, and she answered "I don't know!" Not defiantly or dismissively, but with real confusion, and a look in her eyes that seemed to ask me what exactly was going on inside her heart.
That's the answer she gives now, when she doesn't have an injury to fall back on. Earlier this week, after hitting her funny bone at school and crying on and off for the rest of the evening, she started off by saying her elbow hurt, but after a few hours and no apparent physical damage, she simply answered "I don't know."
"Schuyler," I asked, once it had occurred to me, stupidly late but finally, "Do you ever feel sad and you don't know why?"
She looked at me, quickly and wide-eyed, as if I'd said something wise, something that had been in front of her all along but had somehow escaped her own realization. "Yes, Daddy."
"I do, too," I said. "It's okay to feel sad. And you can tell me any time it happens, okay? You don't need a reason. I'll always listen to you when you're sad."
She's been hugging harder than usual lately, too.
I don't know much about hormones and little kids, and certainly not little girls. I think I'm probably overreacting, which is my fatherly duty in all things, of course. I do know that when I was Schuyler's age, I'd first begun to experience the dark clouds that came to visit me with greater intensity as I got older. I didn't know what it meant at the time, and none of my own family seemed to notice, which surprises me a little, in retrospect, since my own grandmother killed herself a few years before I was born.
But then, it took me a long time to accept the possibility that Schuyler might just possess one of my own monsters for herself, and that it might just be waking up.
So yeah, I have no idea if Schuyler's simply like every other kid in the world her age, and maybe she's just growing up and living more fully in a world that's not always very kind or easy to understand. It's hard, though, watching her find such emotional valleys now and again, especially seeing as how they contrast so sharply with the genuine highs that have defined her throughout the first decade of her life.
I've been reading a great deal over the past couple of days about childhood depression, and while it's easy to scare myself with the lists of symptoms, I also have to admit that they sound pretty similar to the normal behaviors of little kids who are standing on the edge of adolescence, staring into a future they can't possibly understand. I read about the circumstances in a kid's world than can trigger childhood depression, and they sound an awful lot like Life.
But I have to admit, when I read about depression being caused in part by physiological stressors and genetic vulnerabilities and, God, difficulties in successfully communicating, I feel a real squeeze of fear in the very center of my chest.
I've struggled to understand Schuyler's monster for seven years now. Now I'm facing the glimmer of a possibility that she might be carrying another monster as well, one that I may have given to her and which I understand all too well.
Understanding it doesn't help. I don't know how to protect her from this monster, either.
"I bleed the people."
When I asked her what she meant, she just laughed, and kept laughing as I tried in vain to get an answer. She eventually changed it to something about bleeding when she lost a tooth, but I don't know, when your little girl writes "I bleed the people", it's hard to let that go. When she embarks on her future as a brutal despot, don't say I didn't warn you.
-----
Schuyler has been such a constant presence in my life for the past ten years that it's hard to remember what my life without her was like. It's strange, thinking that she never heard me play trombone in a performance (something that she should perhaps be grateful for), or that she never met my first wife (again, something... well, you know). The first thirty-two years of my life had no Schuyler in them, and in all the most significant ways, I feel like they were preparatory years.
But in the past ten years, Schuyler has changed, a lot. People who meet her now see a completely different person than the ethereal, sweet but disconnected little girl I described in my book. They probably think I'm a crappy writer, and they may very well be right about that, but it's not because I didn't describe her accurately at the time. She's changed dramatically in the last three or four years. She's growing up, and becoming the person she's going to be.
She's changing still.
Those of you who have met Schuyler and interacted with her for short periods of time might not believe this. Those of you who have spent a little more time with her may have an inkling of what I'm talking about. She's always been a happy kid, friendly to a fault and energetic to the point of manic, but for the past few months, maybe as long as half a year or so, Schuyler has had occasional but intense lows. She'll start crying for no apparent reason, particularly when I'm away on trips or at work late. She's always tested Julie in different ways from myself, and I suppose that's normal. But in these past few months, she's been sad, sometimes hysterically so. Recently, I've gotten to witness more of it myself, rather than just hearing about it.
Schuyler just turned ten; a few weeks ago, we bought her first training bras. (Yeah, you can imagine how well I took that particular milestone.) As her behavior became more erratic, I think we chalked it up to normal, hormonal changes. But in the past couple of months, and particular the past few weeks, the cloud over Schuyler's mood has darkened. Her emotional state, previously unflappable, has become more tenuous, even sensitive. Perhaps this is what most of you have dealt with in your own children, but it's new to us.
Sometimes when we asked her why she was crying, she would bring up some injury or slight from a classmate, but often these were from days before. I don't believe she was trying to hide anything from us. I think that she was grasping for an answer, trying to reach back to something that made sense, to herself as much as to us.
I don't know why it never occurred to me, of all people, that something a little harder than pre-adolescence might have been at work. The little red flag didn't pop up until I asked her why she was so sad, and she answered "I don't know!" Not defiantly or dismissively, but with real confusion, and a look in her eyes that seemed to ask me what exactly was going on inside her heart.
That's the answer she gives now, when she doesn't have an injury to fall back on. Earlier this week, after hitting her funny bone at school and crying on and off for the rest of the evening, she started off by saying her elbow hurt, but after a few hours and no apparent physical damage, she simply answered "I don't know."
"Schuyler," I asked, once it had occurred to me, stupidly late but finally, "Do you ever feel sad and you don't know why?"
She looked at me, quickly and wide-eyed, as if I'd said something wise, something that had been in front of her all along but had somehow escaped her own realization. "Yes, Daddy."
"I do, too," I said. "It's okay to feel sad. And you can tell me any time it happens, okay? You don't need a reason. I'll always listen to you when you're sad."
She's been hugging harder than usual lately, too.
I don't know much about hormones and little kids, and certainly not little girls. I think I'm probably overreacting, which is my fatherly duty in all things, of course. I do know that when I was Schuyler's age, I'd first begun to experience the dark clouds that came to visit me with greater intensity as I got older. I didn't know what it meant at the time, and none of my own family seemed to notice, which surprises me a little, in retrospect, since my own grandmother killed herself a few years before I was born.
But then, it took me a long time to accept the possibility that Schuyler might just possess one of my own monsters for herself, and that it might just be waking up.
So yeah, I have no idea if Schuyler's simply like every other kid in the world her age, and maybe she's just growing up and living more fully in a world that's not always very kind or easy to understand. It's hard, though, watching her find such emotional valleys now and again, especially seeing as how they contrast so sharply with the genuine highs that have defined her throughout the first decade of her life.
I've been reading a great deal over the past couple of days about childhood depression, and while it's easy to scare myself with the lists of symptoms, I also have to admit that they sound pretty similar to the normal behaviors of little kids who are standing on the edge of adolescence, staring into a future they can't possibly understand. I read about the circumstances in a kid's world than can trigger childhood depression, and they sound an awful lot like Life.
But I have to admit, when I read about depression being caused in part by physiological stressors and genetic vulnerabilities and, God, difficulties in successfully communicating, I feel a real squeeze of fear in the very center of my chest.
I've struggled to understand Schuyler's monster for seven years now. Now I'm facing the glimmer of a possibility that she might be carrying another monster as well, one that I may have given to her and which I understand all too well.
Understanding it doesn't help. I don't know how to protect her from this monster, either.
January 10, 2010
January 9, 2010
Hopeful Me
Well, given my previous post, this may seem sort of ironic, but as of today, I am now writing once a month over at Hopeful Parents, a site for families of kids with disabilities. My first post may seem sort of familiar, since it's adapted from something I wrote a few months ago. But it's an issue that's about to raise its ugly head again, just in time for it to get kicked in the mouth by my size thirteens. Because I'm seriously not in the mood to fight this fight again.
Anyway, go check it out. So far, no one's gotten too crazy in the comments, beyond a little bit of passive-aggressive "if you REALLY loved your kid..." stuff. But it's early yet.
December 30, 2009
On things which I really should let go without comment, but you know how I am
"The world breaks everyone, and afterward, some are strong at the broken places."
Yeah, I saw it.
It didn't call me out, not by name. But the language felt familiar. The author is someone with whom I've corresponded a few times, and when I went back and looked at her emails, I discovered why her essay triggered a sense of deja vu. She'd said almost exactly the same thing to me in email, in response to my own use of the word "broken".
But that was almost two years ago.
I don't know what triggered this essay, and really, it doesn't matter. When you're the parent of a child with a disability, your life becomes a cycle of routine and unpredictability. It makes for a curious emotional mix, in which you find yourself struggling not to fall into a rut and at the same time struggling to avoid being knocked off the rails by the unexpected. (Ruts and rails. I'm mixing metaphors, sorry.) I don't know what brought this topic back up again, but it's obviously just as real for her now as it was two years ago, and I understand that completely.
I guess what I'm trying to say is that I'd be a hypocrite if I were to suggest that Michelle O'Neil is somehow wrong to speak her opinion about my word usage. There seems to be a perception among some that the disability community has (or should have) a universal approach to things like language, but nothing could be further from the truth. I have many issues with People First Language; I personally can't imagine anything worse than asking a child to "take ownership" of their disability while somehow believing that they can do so without also taking responsibility for it. But one thing that truly pets my fur backwards is the idea that People First Language MUST become standard usage within the disability community, professional and family alike. We don't all approach disability in the same way, and Michelle O'Neil's opinion about my use of language is as valid as anyone's. Well, of course it is.
At the same time, however, there was one part of her essay that troubled me.
I appreciate that she means no disrespect, but I guess I should be clear about something now. There are particular aspects of my writing that exist to get your attention. And when I feel like someone needs to be called out, I don't hesitate to do so. (Hi, Bernie Goldberg.) But where disabilities and parenting are concerned, I'm not sure exactly what I would hope to accomplish by intentionally offending other parents, people whose philosophies and approaches and sources of inspiration may differ from mine, but whose struggles and pain are all too familiar.
When I put Schuyler on a t-shirt or program Pinkessa to shill for A&W Root Beer, then you'll have your publicity stunt. (Note to A&W: Call me.)
* * *
"What will Schuyler think when she reads that you believe she's broken?" I'm asked, and the implication is that Schuyler will be hurt and insulted by the word. But to me, the question itself is offensive. It suggests that Schuyler is simple enough and unaware enough that she'll never know the difference, if only the people around her choose the right words.
Schuyler knows. When a TSA agent sarcastically asked her if she could talk, she simply answered "No," without sadness or regret or hurt. She knows, and she compensates, and while her lack of anxiety or sadness about her condition may not last forever, her understanding of exactly who and what she is and what she can be will always be her greatest strength.
"I can't talk," Schuyler says simply, her hand on her throat, but even as the listener begins to make that face, the one etched in unwanted pity, Schuyler is reaching for Pinkessa, impatiently waiting for it to power up so she can tell you that her name is Schuyler, and she's ten years old, and she has a dog named Max and a hamster named Swee. She's broken, and she knows it, but she's got a hell of a fix for that, and she's waiting for you to be impressed. Which you should be.
Broken things of little value are discarded. Broken things of worth are made whole again. Despite all my self-doubts, I continue to flatter myself enough to believe that come what may, Schuyler will always know in which of those categories she belongs.
"I am ten years old."
-- Ernest Hemingway
-----Yeah, I saw it.
It didn't call me out, not by name. But the language felt familiar. The author is someone with whom I've corresponded a few times, and when I went back and looked at her emails, I discovered why her essay triggered a sense of deja vu. She'd said almost exactly the same thing to me in email, in response to my own use of the word "broken".
But that was almost two years ago.
I don't know what triggered this essay, and really, it doesn't matter. When you're the parent of a child with a disability, your life becomes a cycle of routine and unpredictability. It makes for a curious emotional mix, in which you find yourself struggling not to fall into a rut and at the same time struggling to avoid being knocked off the rails by the unexpected. (Ruts and rails. I'm mixing metaphors, sorry.) I don't know what brought this topic back up again, but it's obviously just as real for her now as it was two years ago, and I understand that completely.
I guess what I'm trying to say is that I'd be a hypocrite if I were to suggest that Michelle O'Neil is somehow wrong to speak her opinion about my word usage. There seems to be a perception among some that the disability community has (or should have) a universal approach to things like language, but nothing could be further from the truth. I have many issues with People First Language; I personally can't imagine anything worse than asking a child to "take ownership" of their disability while somehow believing that they can do so without also taking responsibility for it. But one thing that truly pets my fur backwards is the idea that People First Language MUST become standard usage within the disability community, professional and family alike. We don't all approach disability in the same way, and Michelle O'Neil's opinion about my use of language is as valid as anyone's. Well, of course it is.
At the same time, however, there was one part of her essay that troubled me.
The term "broken" continues to float around a bit in special needs circles. It peaks my curiosity, but no longer stings.
At best it is an attempt at conveying the struggle and challenges a special needs child faces. In no way do I dismiss those challenges. Our family faces plenty of challenges, but some children and parents deal with more than I can ever imagine and I mean no disrespect. At worst, however, the use of the term "broken" in reference to a child with special needs is a publicity stunt aimed toward offending.
I appreciate that she means no disrespect, but I guess I should be clear about something now. There are particular aspects of my writing that exist to get your attention. And when I feel like someone needs to be called out, I don't hesitate to do so. (Hi, Bernie Goldberg.) But where disabilities and parenting are concerned, I'm not sure exactly what I would hope to accomplish by intentionally offending other parents, people whose philosophies and approaches and sources of inspiration may differ from mine, but whose struggles and pain are all too familiar.
When I put Schuyler on a t-shirt or program Pinkessa to shill for A&W Root Beer, then you'll have your publicity stunt. (Note to A&W: Call me.)
"What will Schuyler think when she reads that you believe she's broken?" I'm asked, and the implication is that Schuyler will be hurt and insulted by the word. But to me, the question itself is offensive. It suggests that Schuyler is simple enough and unaware enough that she'll never know the difference, if only the people around her choose the right words.
Schuyler knows. When a TSA agent sarcastically asked her if she could talk, she simply answered "No," without sadness or regret or hurt. She knows, and she compensates, and while her lack of anxiety or sadness about her condition may not last forever, her understanding of exactly who and what she is and what she can be will always be her greatest strength.
"I can't talk," Schuyler says simply, her hand on her throat, but even as the listener begins to make that face, the one etched in unwanted pity, Schuyler is reaching for Pinkessa, impatiently waiting for it to power up so she can tell you that her name is Schuyler, and she's ten years old, and she has a dog named Max and a hamster named Swee. She's broken, and she knows it, but she's got a hell of a fix for that, and she's waiting for you to be impressed. Which you should be.
Broken things of little value are discarded. Broken things of worth are made whole again. Despite all my self-doubts, I continue to flatter myself enough to believe that come what may, Schuyler will always know in which of those categories she belongs.
December 26, 2009
Snow Day, 2003
After it snowed the other day, I went looking for video to show Schuyler what we used to call REAL snow. I knew I had some boring old holiday videos I could show her, but in addition, I found this ridiculous little thing I made in February 2003, on a day when we were snowed in with nothing much to do. (That much is clear.)
Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.
A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.
(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)
As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"
Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.
A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.
(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)
As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"
December 25, 2009
Xmas 2009: Surprise Snow, Purple Guitars and Flying Monsters
Santa's detritus
Christmas morning hair
White Christmas, if you get up before it melts off. (Which it did.)
Christmas sunrise
It's just not a traditional Christmas without a flying monster.
The guitar that she's been asking for all year. We're afraid that her polymicrogyria will make it hard and frustrating for her little fingers, but in the end, we decided that at a time of hope and renewal, why not let her give it a try?
I hope that no matter what the reason for YOUR season might be, you have the very best possible holiday and a new year full of promise and hope, of dreams come true and all new dreams after that.
December 21, 2009
Schuyler, at ten
"It is rare that one can see in a little boy the promise of a man, but one can almost always see in a little girl the threat of a woman."
-- Alexandre Dumas
December 19, 2009
Father of the Year nominations are now closed.
A few facts about the next few days, along with an inescapable conclusion.
Fact: Two of my best friends are getting married in Las Vegas on Monday.
Fact: They have asked me to take pictures at the event, which I am thrilled to do.
Fact: Julie cannot attend, as she has to work.
Fact: Julie can't watch Schuyler while she works, and school is out for the year.
Fact: Schuyler also turns ten on Monday. (Yeah, I know. Ten.)
CONCLUSION: I will be taking my sweet little girl to Vegas for her birthday.
When Child Protective Services meets us at the airport, I hope they'll help with our luggage.
December 7, 2009
Post-Carolina
I just wanted to take a moment and thank everyone from the North Carolina Assistive Technology Expo for a fantastic conference. Schuyler and I were made to feel welcome, and we met some truly amazing people, which is hardly a surprise by now. Our thanks to Chip Clarke and Dawn Haynes from PRC for their generosity, and to April Furr and my friend Elizabeth for making the logistics of presenting at something like this by myself with Schuyler even feasible.
It was a fun trip, despite the efforts of the TSA at the Raleigh-Durham Airport to ruin our return trip. (TSA Agent to Schuyler: "What's your name?" Schuyler: "Aye-er." Me: "Her name is Schuyler." TSA sarcastically, to Schuyler: "What, you can't talk or something?" Schuyler and I both: "No...") I never mind traveling with Schuyler, and she's got more patience for the inevitable inconveniences of flying than any adult I know.
She loves a rough flight, so when everyone else is white-knuckling, she's laughing her little head off. True story: When she asked me what was causing the plane to bump around, I told her it was a monster, because I'm that guy. She loved that answer, because she's that girl, and asked me the monster's name. "It's the Turbulence Monster," I said. Not five seconds later, the captain came on and apologized for the turbulence, and when he said the word, she looked at me in wonder and joy as if what I'd said just might be true. Thanks, captain, for that unexpected credibility.
It's funny, but in so many ways, I am reminded on a trip like this most of all that Schuyler is growing up, and into the young woman that I always wanted her to be. Happy, chaotic, funny, in love with everyone and afraid of nothing.
I had a realization today, something of an epiphany, really. It's one that I started to have, very tentatively, when I was writing the book, and I even wrote about it at the very end, although whether or not I always believed it is probably debatable. Today I realized that Schuyler is at a point in her life where there's no turning back. She's going to make it. She's not there yet, and not even close, but she knows what she has to do to get there, and there's a whole village of people watching her who literally will not allow her to get lost or fall through the cracks now.
I think I can see now that if something were to happen to me today, Schuyler would be okay. And that means the whole world to me.
It was a fun trip, despite the efforts of the TSA at the Raleigh-Durham Airport to ruin our return trip. (TSA Agent to Schuyler: "What's your name?" Schuyler: "Aye-er." Me: "Her name is Schuyler." TSA sarcastically, to Schuyler: "What, you can't talk or something?" Schuyler and I both: "No...") I never mind traveling with Schuyler, and she's got more patience for the inevitable inconveniences of flying than any adult I know.
She loves a rough flight, so when everyone else is white-knuckling, she's laughing her little head off. True story: When she asked me what was causing the plane to bump around, I told her it was a monster, because I'm that guy. She loved that answer, because she's that girl, and asked me the monster's name. "It's the Turbulence Monster," I said. Not five seconds later, the captain came on and apologized for the turbulence, and when he said the word, she looked at me in wonder and joy as if what I'd said just might be true. Thanks, captain, for that unexpected credibility.
It's funny, but in so many ways, I am reminded on a trip like this most of all that Schuyler is growing up, and into the young woman that I always wanted her to be. Happy, chaotic, funny, in love with everyone and afraid of nothing.
I had a realization today, something of an epiphany, really. It's one that I started to have, very tentatively, when I was writing the book, and I even wrote about it at the very end, although whether or not I always believed it is probably debatable. Today I realized that Schuyler is at a point in her life where there's no turning back. She's going to make it. She's not there yet, and not even close, but she knows what she has to do to get there, and there's a whole village of people watching her who literally will not allow her to get lost or fall through the cracks now.
I think I can see now that if something were to happen to me today, Schuyler would be okay. And that means the whole world to me.
November 28, 2009
Road Trip with Schuyler
Schuyler and I are coming to North Carolina this week, for the North Carolina Assistive Technology Program's 2009 Assistive Technology Expo. Julie has to work (retail and the holidays make for scant flexibility, as some of you doubtless know already), so it'll just be the two of us.
Will there be trouble and chaos? Come see us and find out. (Smart money says chaos for sure.)
Here are the details:
December 3, 2009
December 3, 2009
10:00am (Opening Session, Salons A, B, C, D ) - Keynote Address: “Fighting Monsters with Rubber Swords” - Robert Rummel-Hudson (Author, Parent)
12:30pm (Salon C) - “Implementing the Big Box of Words: A Parent’s Perspective” - Robert Rummel-Hudson, Author, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St. Martin’s Press 2009) - Listen to a father’s observations on the implementation of AAC in the daily life and school curriculum of a nonverbal child.
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December 3 - 4, 2009
12:30pm (Salon C) - “Implementing the Big Box of Words: A Parent’s Perspective” - Robert Rummel-Hudson, Author, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St. Martin’s Press 2009) - Listen to a father’s observations on the implementation of AAC in the daily life and school curriculum of a nonverbal child.
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December 3 - 4, 2009
2009 Assistive Technology Expo
North Carolina Assistive Technology Program
North Raleigh Hilton, Raleigh, NC
What: The Assistive Technology Expo is an exciting two-day event designed to increase awareness and provide current information on assistive technology. Conference offerings include an exhibit hall (on 12/03/09 only) featuring 30-40 vendors exhibiting the latest in assistive technology products and services, 40 concurrent sessions, a poster session and a Keynote address. Featured Tracks: Work, Education, Vision, Home Modifications and Promoting Healthy Living/Recreation.
Who: Each year between 550-700 registered participants from across the country attend the NC AT Expo and approximately 1250 attend the free Exhibit Hall. Participants include: persons with disabilities, family members, teachers, therapists, Vocational Rehabilitation and Independent Living staff, rehabilitation counselors, employers, engineers, college professors, medical staff, college and university students, and authorized state purchasers.
North Carolina Assistive Technology Program
North Raleigh Hilton, Raleigh, NC
What: The Assistive Technology Expo is an exciting two-day event designed to increase awareness and provide current information on assistive technology. Conference offerings include an exhibit hall (on 12/03/09 only) featuring 30-40 vendors exhibiting the latest in assistive technology products and services, 40 concurrent sessions, a poster session and a Keynote address. Featured Tracks: Work, Education, Vision, Home Modifications and Promoting Healthy Living/Recreation.
Who: Each year between 550-700 registered participants from across the country attend the NC AT Expo and approximately 1250 attend the free Exhibit Hall. Participants include: persons with disabilities, family members, teachers, therapists, Vocational Rehabilitation and Independent Living staff, rehabilitation counselors, employers, engineers, college professors, medical staff, college and university students, and authorized state purchasers.
November 22, 2009
CP Study
For parents of kids with cerebral palsy, I'm posting this on behalf of Adam Bowker. Adam is a speech pathologist and AAC researcher whom we had the pleasure of meeting at the American Speech Language Hearing Association Convention last year. He's one of the good guys.
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Dear parents,
I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).
Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.
Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.
If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850
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Dear parents,
I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).
Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.
Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.
If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850
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