It's Father's Day, so it's appropriate (and very cool) that I can point you to an interview I gave ("Fathering a Daughter with a Hidden Voice") to an excellent new resource site, Support for Special Needs. It was a fun interview that came out of a nice long chat with Julia Roberts, and I didn't make a single Pretty Woman joke, because I am occasionally capable of being a grown up.
Father's Day can feel a little strange for the fathers of broken children. Most of us feel a little broken ourselves. The reasons for that disconnect might not always be so obvious. The numbers are pretty clear; the primary caregivers for kids with disabilities tend to be mothers, and that's just a fact. I suspect that mirrors neurotypical society, but the fact remains that many, many fathers of special needs children are on the outside looking in on the day-to-day lives of their kids, and often by their own choice. It's a shameful truth, but one that does no one any good to ignore.
I hear it often. "I think it's so great that you're such an involved father!" I see the looks in the eyes of members of Schuyler's IEP team, mostly from the new ones, when I walk into the meetings, and when I speak up, as if they'd almost expect to hear Schuyler talking before a father would. And I see the broad generalizations, even here. In a recent post, when I expressed my own self-doubts and admitted that Julie and I hadn't fully faced some aspects of Schuyler's disability head-on, one commenter just mentally adjusted that and turned it into how Julie is the strong one, no self doubts and no illusions, but me? I was just like this commenter's husband, in denial and uninvolved in the details of my kid's education and care. In her head, the narrative reads that way, and so it became my narrative, too. And she's not alone.
Mostly, though, I get the opposite treatment. Some people treat me like an aberration. I'm like some bizarre extraterrestrial father who puts his daughter's well-being ahead of his own, one who goes to all the IEP meetings and all the parent nights and the playmates. "Here is a father who gives everything to his kid, and puts her happiness ahead of his own! Isn't that wonderful and weird?
Well, I call bullshit.
It seems like almost everyone has so much anecdotal evidence of crappy fathers who don't step up on behalf of their disabled kids. But in the past two years, since my book came out and I began traveling around and meeting other families, it has been my honor and privilege to meet some amazing fathers. And I'm not just talking about the ones who show up to the IEP meetings and doctor's appointments, either. I'm talking about extraordinary dads whose work on behalf of their own kids have changed the world for countless others, too.
Richard Ellenson saw a need for his son, whose cerebral palsy left him unable to communicate and for whom existing speech devices were inadequate for his particular needs. The device he created, the Tango, has been praised for its innovative design and success in social integration of AAC. Dan Habib turned his fight for full integration for his son into a celebrated documentary and an ongoing project at the University of New Hampshire, dedicated to creating and developing more inclusive schools. I've met extraordinary authors and advocates like Rupert Isaacson and Michael Greenberg. I've been in the company of some amazing fathers.
Amazing fathers, and yet they're exactly like all the fathers out there who work tirelessly for their children with disabilities. What sets these fathers apart, in my mind, is that rather than trying to find a way to fit into our society's narrow idea of what fathers are supposed to do, they've taken their talents and their abilities and they've forged into territory that hasn't always been welcoming to them.
Plenty of fathers don't do that. Is that because some of them are crappy fathers? Of course. But how many fathers respond to the low expectations of our society and our system, one that assumes that the mothers of these kids will be the ones who will take care of them? How many fathers go online to find information and end up on page after page of resources for Special Needs Moms? How many read the poems about how special those moms are, how hard they work and how they are the only ones these kids can count on? I know I see those sites and those posts. I see them every day, and even now, after everything I've said and done and written, after as many speeches as I've delivered and as many books as I've signed and as many IEP meetings I've attended and been a pain in the ass in, even now, I still hear the tiny voice in my head, the one that whispers "Your presence is not required. Your input is not necessary."
Look, fathers need to get involved. Fathers need to step up and take on their share of the work. That much is clear. That's not just in the disability community, either, but I believe it's even more critical that it happen in these families. This isn't an episode of Mad Men; the old models of fatherhood no longer work. I'm not sure they ever really did.
But there needs to be an accompanying significant shift in our societal attitudes. There has to be a change in how fathers are seen. Fathers of broken children aren't volunteers. We don't want partial credit just for showing up. And we don't want a pat on the head. We want to be involved. And we should be. You as mothers and as society should have the expectation that we're going to be, and with that, you need to be willing to step back and let our talents shine, let our unique perspectives contribute fully.
I think you might be surprised at what you get in return.
June 20, 2010
June 9, 2010
And then it was summer.
(The perhaps inevitable result of scented markers and fine motor control issues...)
---
First of all, I've posted my monthly essay on Hopeful Parents. Not a long or particularly profound one this time, but it's what was in my head and so there it is. Sometimes the thing I need to say is as simple as "Hey. Cut it out."
Schuyler has begun her summer with us, and we're walking a fine line between "Whee! Isn't summer FUN?" and "Holy crap, we've got a lot to do. Here's your homework for the rest of the day. Do it now, and maybe you can catch the last dying rays of the sun before it's time for bed."
The trick, I think (hope), is to keep it interesting, and so far I think we're doing okay. Schuyler's new fascination with email means that when I send her a random funny photo and ask her to reply with a story about it, she's into the task. In the same vein, math puzzles, ebooks, word games, all hold her attention when they are presented on her iPad, which is turning out to be an even better tool for her than we'd anticipated.
She comes with me to my office on days that I work, and she draws or writes or reads, or otherwise amuses herself on her iPad. (Thank you, streaming Netflix.) We talk a lot and we wander the campus when one or both of us needs some air. My new office is down on the bottom floor, in the back of a student computer lab that is closed during the summer, so it's quiet while she's here. I'm happy to have the company.
So this is our summer. Mostly I find myself focusing on being fun and engaging with her, and trying hard not to let on that in ways both large and small, and both fleeting and forever, I feel like my world is slowly falling apart around me.
June 3, 2010
Schuyler's Poetry Book
Schuyler has been writing poetry in school, accompanied by her own drawings. I'm not under any illusions here; aside from perhaps the one about the fox (which is also my favorite), these poems are clearly the product of a LOT of guidance and help from her teachers.
What keeps it from being "macaroni art", in my opinion, is the fact that the concepts and imagery should be very familiar to anyone who knows Schuyler. It's all hers.
(Just this once, I'm going to keep comments closed on this post. I wanted to share something special instead of just my insecurities, as a break from my self-indulgent writing of late. Either you'll enjoy it or you won't, but I don't need to know either way. I know how I feel about Schuyler's work. And that's enough for me.)
COUPLET
I heard of a fox
I opened a box.
I heard of a fox
He's wearing my socks.
I heard of a fox
He jump and he knock.
I heard of a fox
He has the pocks.
HAIKU
Puppies
Puppies can look sad.
Puppies are like little dogs.
I like to hold them.
Pasta
Ravioli rocks.
Ravioli is awesome.
Cheese filled pasta squares.
"Queen of this whole world."
QUATRAINS
I went on the field trip.
I ate a cookie and a chip.
I wanted to give a big cheer.
When I saw a pretty deer.
I ate a cookie that was chocoate chip.
I found it on a pink spaceship.
Through the air the ship went zip.
I am going on a trip.
June 1, 2010
Alamo
It has been noted that my last two entries ("Truth can be a monster, too" and "A question of faith") are almost completely contradictory. They are. They are also both entirely accurate representations of my emotional state at the present time.Funny how that works, the whole "people are complicated" thing.
The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.
But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.
And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.
On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.
If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de Béxar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.
But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.
I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.
Like I said, that represents a not-so-good day.
May 29, 2010
A question of faith
So yeah, it's been a rough week.
We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".
It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)
But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.
They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.
Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.
Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.
Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.
According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.
Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.
Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.
The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.
We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.
What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.
Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.
I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.
We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".
It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)
But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.
They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.
Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.
Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.
Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.
According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.
Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.
Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.
The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.
We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.
What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.
Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.
I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.
May 27, 2010
Truth can be a monster, too
I go out of my way to portray myself as a big shot author and disability advocate. Just look at that suit, after all. I must know a lot about this stuff, which is why I get asked to come speak, right? And if I post enough photos or event notices, you might just forget why I'm really here, and why I had a book published in the first place, and why people really ask me to speak (unless they are Baptists). If I'm tricky enough, you might just forget that all I am is a father, and everything I do is in that capacity. Am I an author, or a father who wrote a book about the only thing I seem to know how to do? Does that distinction even matter?
I'm a father, and not just a father, but the father of a mysterious and broken little girl whom no one in the world seems to understand completely. Not her teachers, not her therapists or diagnosticians, and not her extended family. There are times that I think maybe I understand her, but of course that's not true. I try my best, but I am crippled by my love for her, which sounds like a wonderful thing but in reality is wrapped in fear and bias.
I've written in the past about our resistance to the desire of the school's educational diagnostician to administer a new cognition measurement test to Schuyler, with the aim of a more accurate IQ number that, in her opinion, would likely place Schuyler in the range associated with mental retardation. When it came up again early this semester, we didn't grant permission to administer the test that would measure cognitive impairment (and would include the IQ number and possible MR label), but we went ahead and gave permission to give the rest of the evaluation, which would measure academic skills and performance.
We got the report this week, and it was pretty negative. The diagnostician prides herself of her straight talk, which I appreciate, mostly. She believes Schuyler is retarded, to put it bluntly, and we do not. It's a difference of opinion, although I don't think of it like one of those Coke-or-Pepsi, Mac-or-PC things where we can just agree to disagree. This matters. But still, she's a professional and her opinion counts.
The report doesn't say this, of course, since we refused the cognitive evaluation. But it presents a pretty bleak picture of Schuyler's abilities. And it caused us to begin asking questions about Schuyler's present and her future.
At her annual IEP meeting today, those questions were answered.
So here's the part where I confess that I've been lying to you about something. I haven't been doing it intentionally; until today, I thought it was true myself. But here it is, our new truth.
Schuyler isn't really being mainstreamed. Not to the extent that we believed, anyway. Schuyler goes to a regular fourth grade classroom for science and history and special little projects, and of course she goes to art and music in regular classes. But the bulk of her academic work, the core subjects like reading and writing and math, these take place in her special education class, and the work she's doing there is not age appropriate. Her progress is steady, but not enough to bring her out of special education, and according to her team, she is unlikely to ever catch up.
When I expressed our goal of having Schuyler primarily mainstreamed by the time she leaves middle school, we were told flat out by the diagnostician, with the silent agreement of the rest of the team, that Schuyler is very unlikely to reach that point.
How do we feel? I can't speak for Julie, but for myself, I feel like I've been living a big joke. I feel like in my mind, Schuyler was a serious student with a real shot at living and succeeding in the neurotypical world, but to her teachers and her team, our goals were unrealistic. At one point the diagnostician said that she understood our need to be unwavering advocates and to believe that anything was possible, before she pointed out that it was her job to present the facts as she determined them. And in her eyes, Schuyler isn't just delayed. She has a significant cognitive impairment, and that's that.
We know Schuyler is delayed, yes; remember that she didn't have any real expressive language until the age of five. Her brain and her world developed internally, without language or much real guidance, and I've always believed that the key to reaching her was to understand her world and how she moves through it. But perhaps I'm alone in that belief. We have always understood that she was behind, but it wasn't until today that we really faced the possibility that she might not have the capacity to ever catch up.
I've stood in front of audiences of approving therapists and parents who wanted to believe me almost as much as I wanted to believe myself, and I've told them that thanks to her AAC technology, her good school program, her unstoppable will and her broken but clever little brain, Schuyler was spending the better part of her day in a regular, age-appropriate class, doing the same work as her fellow fourth graders and well on her way to graduation and success.
But as I found out today, that wasn't true. Today I found out that Schuyler may be uniquely broken, but she's got a struggle and a future ahead of her that's identical to thousands of other kids. She's in a school that will continue to teach her and care for her better than most, but one that has a realistic, data-supported expectation for her abilities that we cannot share.
I love my little girl, more than I ever thought possible, and I believe in her with everything I am. But today, I faced the fact that my love for her might just be blinding me. For all my fancy book events and all my inspirational speeches and all my "gee, what a dad!" accolades, in the end I might be just like any other parent of a disabled child who has convinced themselves that the future is going to be easier, not harder, than the past and the present. I've looked at families with kids who sit solidly within that MR diagnosis and I've counted myself fortunate that my daughter has future options unavailable to them, but that might not really be true after all. It's entirely possible that I've stupidly and arrogantly pitied my own people.
My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.
So how do I feel? I'm tired. It's exhausting, trying to build a fantasy world in which you child's disability isn't going to hold her back forever. It's a full-time job, convincing myself that everything's going to work out somehow and that one day she'll tell people "Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I'd like to dedicate this Pulitzer to them."
And it requires a constant, unblinking effort to convince myself of the very very pretty lie that my little girl is going to be okay.
I'm a father, and not just a father, but the father of a mysterious and broken little girl whom no one in the world seems to understand completely. Not her teachers, not her therapists or diagnosticians, and not her extended family. There are times that I think maybe I understand her, but of course that's not true. I try my best, but I am crippled by my love for her, which sounds like a wonderful thing but in reality is wrapped in fear and bias.
I've written in the past about our resistance to the desire of the school's educational diagnostician to administer a new cognition measurement test to Schuyler, with the aim of a more accurate IQ number that, in her opinion, would likely place Schuyler in the range associated with mental retardation. When it came up again early this semester, we didn't grant permission to administer the test that would measure cognitive impairment (and would include the IQ number and possible MR label), but we went ahead and gave permission to give the rest of the evaluation, which would measure academic skills and performance.
We got the report this week, and it was pretty negative. The diagnostician prides herself of her straight talk, which I appreciate, mostly. She believes Schuyler is retarded, to put it bluntly, and we do not. It's a difference of opinion, although I don't think of it like one of those Coke-or-Pepsi, Mac-or-PC things where we can just agree to disagree. This matters. But still, she's a professional and her opinion counts.
The report doesn't say this, of course, since we refused the cognitive evaluation. But it presents a pretty bleak picture of Schuyler's abilities. And it caused us to begin asking questions about Schuyler's present and her future.
At her annual IEP meeting today, those questions were answered.
So here's the part where I confess that I've been lying to you about something. I haven't been doing it intentionally; until today, I thought it was true myself. But here it is, our new truth.
Schuyler isn't really being mainstreamed. Not to the extent that we believed, anyway. Schuyler goes to a regular fourth grade classroom for science and history and special little projects, and of course she goes to art and music in regular classes. But the bulk of her academic work, the core subjects like reading and writing and math, these take place in her special education class, and the work she's doing there is not age appropriate. Her progress is steady, but not enough to bring her out of special education, and according to her team, she is unlikely to ever catch up.
When I expressed our goal of having Schuyler primarily mainstreamed by the time she leaves middle school, we were told flat out by the diagnostician, with the silent agreement of the rest of the team, that Schuyler is very unlikely to reach that point.
How do we feel? I can't speak for Julie, but for myself, I feel like I've been living a big joke. I feel like in my mind, Schuyler was a serious student with a real shot at living and succeeding in the neurotypical world, but to her teachers and her team, our goals were unrealistic. At one point the diagnostician said that she understood our need to be unwavering advocates and to believe that anything was possible, before she pointed out that it was her job to present the facts as she determined them. And in her eyes, Schuyler isn't just delayed. She has a significant cognitive impairment, and that's that.
We know Schuyler is delayed, yes; remember that she didn't have any real expressive language until the age of five. Her brain and her world developed internally, without language or much real guidance, and I've always believed that the key to reaching her was to understand her world and how she moves through it. But perhaps I'm alone in that belief. We have always understood that she was behind, but it wasn't until today that we really faced the possibility that she might not have the capacity to ever catch up.
I've stood in front of audiences of approving therapists and parents who wanted to believe me almost as much as I wanted to believe myself, and I've told them that thanks to her AAC technology, her good school program, her unstoppable will and her broken but clever little brain, Schuyler was spending the better part of her day in a regular, age-appropriate class, doing the same work as her fellow fourth graders and well on her way to graduation and success.
But as I found out today, that wasn't true. Today I found out that Schuyler may be uniquely broken, but she's got a struggle and a future ahead of her that's identical to thousands of other kids. She's in a school that will continue to teach her and care for her better than most, but one that has a realistic, data-supported expectation for her abilities that we cannot share.
I love my little girl, more than I ever thought possible, and I believe in her with everything I am. But today, I faced the fact that my love for her might just be blinding me. For all my fancy book events and all my inspirational speeches and all my "gee, what a dad!" accolades, in the end I might be just like any other parent of a disabled child who has convinced themselves that the future is going to be easier, not harder, than the past and the present. I've looked at families with kids who sit solidly within that MR diagnosis and I've counted myself fortunate that my daughter has future options unavailable to them, but that might not really be true after all. It's entirely possible that I've stupidly and arrogantly pitied my own people.
My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.
So how do I feel? I'm tired. It's exhausting, trying to build a fantasy world in which you child's disability isn't going to hold her back forever. It's a full-time job, convincing myself that everything's going to work out somehow and that one day she'll tell people "Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I'd like to dedicate this Pulitzer to them."
And it requires a constant, unblinking effort to convince myself of the very very pretty lie that my little girl is going to be okay.
May 24, 2010
Uninvited
A few weeks ago, I was invited to speak to an autism book club at a large Baptist church here in Plano.Yeah, I know what you're thinking. I know because I thought the same thing. Well, two things come to mind, actually. The most immediate might just be that Schuyler isn't autistic. And that was the first thing that I pointed out to the organizer. But she assured me that it was fine, and that it was my experience with disability parenting that was important and the reason she wanted me to speak to her group.
I didn't mention the other thing, the fact that I'm not a Christian.
Well, no. I didn't mention it because while you may think whatever you like about my religious beliefs and the fact that I am not a Christian and am not raising my daughter to be one, the one thing you have to admit is true is that I have never pretended otherwise. I've never shied away from talking about my faith; my agnosticism has been an irritant to both my Christian and my non-believer friends alike.
My book surprised a lot of people (including me, honestly) because of the amount of ink I spilled discussing God. My Christian friends were disappointed that I didn't embrace Jesus at the end and instead described what was, at best, something of a truce with God. And my fellow heathens were puzzled by, well, the same thing. I may have been shaking my angry fists at the sky, but as my mother pointed out when she read it, at least I was still talking to God. We might be in need of couples counseling, but I hadn't dismissed the idea altogether.
Which is why I thought it sounded like a solid idea to talk to the Baptists. I haven't had very many positive dialogues with Christian groups like this in the past, but I'm not opposed to the idea. I assumed that the organizer of this book club had read the book and saw a deeper spiritual journey going on, and one that merited discussion with the faithful of her group.
Turns out, she hadn't read the book. Not yet.
As she made her way through the book, I could sense from her emails that she was troubled. I got several "I'm on page 154, and I've got some questions..." emails, which I tried to answer as best as I could. Particularly on the topic of my own beliefs, I said this:
For me as an agnostic, it is, in some ways, that lack of what others call "faith" that sustains me. It leaves open the possibility of something greater, something beyond my understanding, and it gives me hope that love is bigger than the cramped, mean world that we live in. And if I can't believe I know the nature or the origin of that love like the Christian believes, I also make room for it anyway. Which I suppose is its own kind of faith.
(...)
In the end, you know what's in your heart, and THAT'S the place where you keep your own faith. And while that sounds sort of lonely, I also find a great comfort in it.
I got uninvited to speak to her church's Autism Book Club.
I don't generally like to quote from private email, but since this event had already been publicized in advance (including by me) and my daughter's smiling face had already graced the club's website before being pulled without warning (before I was even officially uninvited), I feel like this one sentence of explanation is relevant. More to the point, it says a lot about, well, a lot.
"My book club is promoting Christianity as the answer to life's problems and that's what people are expecting when they walk in the door."
So there you go. Am I bitter? I don't like to think of myself as a bitter person, but yeah, I suppose I am, at least a little. Am I disappointed? Absolutely. But most of all, am I a little less likely to agree to a dialogue like this in the future? Does this feed my natural predisposition to distrust an agent of an organized Christian group? Yeah, it really does.
I have been asked on more than one occasion if I plan to teach Schuyler about Jesus, as if NOT doing so was somehow unAmerican. And I've been told that I am somehow limiting her future if I don't. Christians teach their kids what they believe, and while the best of them give them a choice, they still teach through their own biases. That's not even a bad thing. It's the nature of parenting, and it's part of how humans have built their tribes for thousands of years.
Well, for those questioners, I have good news, and I have bad news. The good news is that yes, we fully intend to teach Schuyler about Jesus Christ, among the other philosophers of history.
The bad news is that we intend to teach her about Christians, too. The good, the bad and the ugly. Because we're promoting information as the answer to life's problems.
May 6, 2010
Purple snowflake
Some things are hard to see when you are standing close to them. The passage of time masks growth and allows you to hold a tiny little baby and barely notice as she grows into an actual large human person thing.
And then you receive her fourth grade school portrait, taken by someone else at a place you never saw, on a day like any other when you put your baby girl on a bus and sent her into a world that sees her as a five foot tall preteen girl, You see the photo, and the person looking back at you is both the most familiar being in the world, and a mysterious stranger.
Schuyler is ten years old. I knew that, of course. But when I look at this photo of a girl who is not a baby and isn't even going to be a child much longer, the reality lands on me in a way that I guess it hadn't before.
In most ways that's no different from any father who has a hard time letting go of his little girl, I suppose. It's a cliche, I know. It's not one I particularly enjoy embodying, mostly because in matters of Schuyler and her well-being, I pride myself on being a fierce advocate for her. It's important, that position, the most important in my life, the one that really matters. I feel like it requires clarity and understanding and focus. Being all mushy-headed and "Aw, my widdle baby is all grown up, waah" feels like an idiotic, cartoonish distraction. I have no desire to be that familiar buffoon dad from any of a hundred forgettable sitcoms. And none of us really has the time for it, either.
As with all things Schuyler, however, it's not that simple. Last summer, I spoke briefly with a doctor and researcher who is familiar with both Schuyler and her monster; indeed, he is one of the world's top experts on disorders like hers. He pointed out how well Schuyler is doing and how unusual her manifestation of polymicrogyria really is. On one hand, her speech is affected, profoundly so. At the same time, she's completely ambulatory, can write and eat with only minor impediments, and appears to be cognitively high-functioning as well. She walks through the world like a perfectly normal little girl her age, and yet she's not like any other.
"I've never seen PMG manifest itself with quite such a narrow focus," he said. "Schuyler is probably unique in the whole world."
I knew that, I've always known that on some level, but to hear it put like that made it even more real. Every kid is different, I know; every child is a snowflake. But as far as that goes, Schuyler is wholly unique, like a purple snowflake.
Being Schuyler's father, then, isn't a job that always corresponds to precedence. She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it. She's like your kid in a lot of ways.
But Schuyler is also a ten year-old girl who has never had a conversation on the telephone with anyone other than her parents; actually, I don't think she's ever dialed a phone in her life. When she writes sentences using her spelling words for school, she composes pieces that work grammatically and convey meaning but also demonstrate that her understanding of language and the world is abstract and different, developed as it has in an internal world mostly her own. Schuyler has never whispered a secret in another little girl's ear. Indeed, she doesn't spend much time with other kids her age outside of school, which breaks my heart. She lives a sheltered life, of necessity, and I can feel how that's beginning to stifle her a little. But the ways out of that are complicated, and they require a level of peer acceptance that I simply can't control.
Schuyler is growing up, and she's doing so in a world that isn't completely sure what to do with her. It scares me, in part for reasons that are just those of any father in the world, but also for some that are literally mine and mine alone. In that respect, I'm a bit of a purple snowflake, too.
May 3, 2010
A Message from the Foundation for Children with Microcephaly
A special message for all my fellow polymicrogyria peeps and families with other related brain monsters (yo, what up?). This convention is a fantastic opportunity to meet with the top doctors in the field (including the brilliant Dr. William Dobyns; meet him and tell him how much you liked my book, just to see if his face twitches) as well as other families just like yours.
Bonus: I'll be there, so you can finally come punch me in the face if you like. Man, I'm a giver.
-----
The Foundation for Children with Microcephaly has recently celebrated their 3rd birthday having official 501(c)(3) nonprofit status. We want to include our families in our celebration by offering Early Bird pricing again to register for our annual convention for three days only!
How it Works:
Download your registration form at www.childrenwithmicro.org/wearenotalone.html - Send in your completed registration form and payment POSTMARKED ON MAY 3, 4, or 5th and receive Early Bird pricing to register for our amazing annual convention. This special pricing can save a family $100 or more! In order to participate and qualify make sure that your envelope is POSTMARKED ON MAY 3, 4, or 5th!
Families who register on or after May 14th cannot be guaranteed an appointment with the world's leading physicians, but can be placed on a waiting list. There are still physician appointments available - send in your registration form to secure your child's doctor appointment!
You too can contribute to making this year's convention bigger and better! Let your local hospitals, doctors offices, & therapists know about FCM and our unique annual convention, "We Are Not Alone". They may know other children diagnosed with Microcephaly, Lissencephaly, Polymicrogyria or other closely related neurological disorders. Refer them to the website so they can let their patients know about our convention. We want this year's convention to be the biggest and best - we don't want any of our families to miss it because they didn't know about it! Thank you for helping us spread the word!
Feel free to call us with any questions or concerns! We still need help organizing the convention - if you have extra time on your hands and can contribute please let us know!
Thank you all for your support! I look forward to meeting you at "We Are Not Alone" - the 3rd Annual Microcephaly Convention! Remember... we also welcome families who have children diagnosed with Lissencephaly, Polymicrogyria and other closely related neurological disorders!
Best Wishes,
Jenni & Kaylee
Jenniffer Lewis
Founder / CEO
Foundation for Children with Microcephaly
Office: 623-476-7494
jenni@childrenwithmicro.org
April 22, 2010
Talking boxes on the tee-vee!
For those of you interested in AAC technology and the world of people like Schuyler, Samuel Sennott and his brilliant AAC app Proloquo2Go will be featured on The Doctors tomorrow (Friday, April 23).
The program deals specifically with autism, so there's sure to be lots of crazy talk and fighting and people throwing chairs at each other over vaccinations and gluten and alien abductions and all that.
Okay, well, probably not. But I'd watch that show for sure.
April 12, 2010
Spare the rod, redux
Every time I write about corporal punishment, I get more angry emails and comments than any other topic. Seriously. And keep in mind the number of times I've referred to special needs kids as "broken", or Easter as "Zombie Jesus Day". When I express my highly charged and controversial opinion that folks who incorporate physical violence against their kids into their parenting toolbox might want to rethink that particular approach, I get reactions. Some people like to suggest that I write about it specifically so that I'll get the reactions that I do, feeding off the conflict like some kind of emotional vampire.
Actually, that's not why I do it. I write about it because (and again, this might come across as radical liberal crazy talk) I believe quite strongly that hitting your kids is a somewhat fucked up thing to do.
Anyway, you've heard me talk about it before, so this time, I'll simply link to a story on NPR ("Spanking Leads To More Aggressive Kids", April 12, 2010). The report discusses a new study published by the journal Pediatrics, which showed that kids who were spanked more than twice a month as three-year-olds were considerably more likely to become aggressive five-year-olds than kids who weren't spanked.
So there you go. You may now fire up the "there's nothing wrong with a little swatty-poo on the hiney if it keeps my dear wee ones from running in front of a locomotive" and "I was spanked as a child and I turned out to be a model citizen who only occasionally shoots up a post office" comments, starting... NOW.
April 5, 2010
Making weird cool
Despite my past work as an IT guy, it is an undeniable fact that I am not much of a technical person. It's worth noting that I did Mac support in the past, after all, and during the scary year and a half that I had to provide support for both Macs and PCs while at the Yale Med School, I mostly brought people skills to the table. I was pretty bad at the tech side of it, but I worked with nice people who were always ready to help me. So yeah, I was awful. I needed a lot of help.
It would be silly, then, for me to pretend that I had much to add to the tremendous amount written over the past week or so about the new Apple iPad. (I will say that as an ebook reader, I thought it was brilliant, even without digital ink, and I can see now why the Amazon folks have been such babies about the whole thing.) But there's one aspect of change that the iPad presents that I haven't read much about which I do think I can comment on, and that's in the field of assistive technology, specifically alternative communication.
Week before last, Schuyler and I attended an extraordinary AAC workshop at Vanderbilt University's Peabody College in Nashville. During the discussions over the two-day period I was there, it became clear to me that even in the past few years in which I've gone from a pain-in-the-ass parent to a published author and advocate (and yeah, a pain-in-the-ass parent still), the AAC world has changed. The basic concepts and the language approaches have remained constant, but both the technology and the design philosophies have advanced dramatically since 2005, when we first came on board.
In both those areas, I think the iPad has the potential to be a game changer for AAC. More than potential, actually. I think that for ambulatory users like Schuyler (which includes the huge population of individuals with autism, too), the changes being heralded by the iPad are inevitable.
The technical reasons are clear enough. The iPad uses the same touchscreen technology as Schuyler's speech device, so it's familiar. But it also brings a multi-use advantage, it gives her easy access to internet and ebooks and, well, everything else that has been well-documented by all the iPad hype. And that leads directly into something harder to quantify but still wildly important: the social piece.
Shortly after my book came out, we travelled to the American Speech Language Hearing Association's 2008 conference in Chicago, where I had the pleasure of speaking with Richard Ellenson. Richard was a successful ad executive and designer whose own son has severe verbal limitations due to cerebral palsy. When existing speech devices didn't work out for his son, Richard developed one that focused on fast, effective communication. The resulting device, the Tango, changed the way people thought about design and social integration of AAC for young users. The Tango wasn't particularly earth-shattering as a speech device, but its innovative design made it fit seamlessly into a contemporary kid's digital world.
"If you walk around this hall, you'll see a lot of impressive and wonderful innovation," Richard said to me at the ASHA exhibit hall. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"
AAC developers have been figuring that out. Schuyler's current device, her beloved Pinkessa, is a good example of the principle, and her enthusiasm for her device usage jumped considerably when she got it. But the iPad takes that social integration piece and marries it to a leap in technology and information access and, yes, to COOL. To you and me, cool is a pleasant luxury. To kids with disabilities, cool is elusive, and a powerful motivator.
If you know anything at all about AAC, you're aware that other big thinkers are way ahead of the game. One innovator I met in Chicago on that same trip is Samuel Sennott, and we've remained friends ever since. Sam developed an AAC app for the iPhone and iPod Touch called Proloquo2Go, and even when it was first released, it was clear that when the iPad came out, this app would be a natural fit. The moment the first iPad was sold, Samuel was ready to turn it into a Big Box of Words.
Schuyler's been playing around with Proloquo2Go, and she's shown some intuitive aptitude for it. We're all about giving her different and multiple options for communication, and we have been all along, even before we found AAC. Proloquo2Go may very well become one of the tools she uses regularly. But after five years with Schuyler's Big Box of Words and then Pinkessa, we remain deeply committed to the Prentke Romich Company and to Unity, the Minspeak-based language system that their devices run and which, I believe, gave Schuyler her chance at the kind of life where her monster doesn't get to call the shots and write her story for her.
So if I woke up tomorrow and found myself suddenly running PRC, the very first thing I'd do would be to develop an app for the iPad that would run Unity. I'd sell it on iTunes, and I wouldn't sell it cheaply. I'd do this because I would know that even if I sold it for hundreds of dollars, people would buy it, gratefully. Not every user, certainly, or even most of them. PRC's devices facilitate use by just about anyone, and I suspect that many of their users, perhaps most of them, are not ambulatory enough to use a iPad. Schuyler's device is ready to be used with a wheelchair mount, a head switch, an eye gaze system, or any other number of facilitations for varying degrees of disability. Companies like PRC will continue to make and sell their amazing devices because they are changing the lives of people every day, and giving them voices.
One day, and perhaps not that long from now, those users will want integrated devices, too. PRC already makes a speech device/PC hybrid, and I suspect other manufacturers do as well. But as of now, for the users who are ambulatory and capable of using a device like the iPad, there are suddenly options, not just to communicate and to be able to afford an AAC-ready device without third party funding, but also to join the rest of the world in using some very cool technology and subsequently being, in a tangible way, part of the very cool crowd.
Trust me, that option for coolness means more to people like Schuyler than it does to you and me.
It would be silly, then, for me to pretend that I had much to add to the tremendous amount written over the past week or so about the new Apple iPad. (I will say that as an ebook reader, I thought it was brilliant, even without digital ink, and I can see now why the Amazon folks have been such babies about the whole thing.) But there's one aspect of change that the iPad presents that I haven't read much about which I do think I can comment on, and that's in the field of assistive technology, specifically alternative communication.
Week before last, Schuyler and I attended an extraordinary AAC workshop at Vanderbilt University's Peabody College in Nashville. During the discussions over the two-day period I was there, it became clear to me that even in the past few years in which I've gone from a pain-in-the-ass parent to a published author and advocate (and yeah, a pain-in-the-ass parent still), the AAC world has changed. The basic concepts and the language approaches have remained constant, but both the technology and the design philosophies have advanced dramatically since 2005, when we first came on board.
In both those areas, I think the iPad has the potential to be a game changer for AAC. More than potential, actually. I think that for ambulatory users like Schuyler (which includes the huge population of individuals with autism, too), the changes being heralded by the iPad are inevitable.
The technical reasons are clear enough. The iPad uses the same touchscreen technology as Schuyler's speech device, so it's familiar. But it also brings a multi-use advantage, it gives her easy access to internet and ebooks and, well, everything else that has been well-documented by all the iPad hype. And that leads directly into something harder to quantify but still wildly important: the social piece.
Shortly after my book came out, we travelled to the American Speech Language Hearing Association's 2008 conference in Chicago, where I had the pleasure of speaking with Richard Ellenson. Richard was a successful ad executive and designer whose own son has severe verbal limitations due to cerebral palsy. When existing speech devices didn't work out for his son, Richard developed one that focused on fast, effective communication. The resulting device, the Tango, changed the way people thought about design and social integration of AAC for young users. The Tango wasn't particularly earth-shattering as a speech device, but its innovative design made it fit seamlessly into a contemporary kid's digital world.
"If you walk around this hall, you'll see a lot of impressive and wonderful innovation," Richard said to me at the ASHA exhibit hall. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"
AAC developers have been figuring that out. Schuyler's current device, her beloved Pinkessa, is a good example of the principle, and her enthusiasm for her device usage jumped considerably when she got it. But the iPad takes that social integration piece and marries it to a leap in technology and information access and, yes, to COOL. To you and me, cool is a pleasant luxury. To kids with disabilities, cool is elusive, and a powerful motivator.
If you know anything at all about AAC, you're aware that other big thinkers are way ahead of the game. One innovator I met in Chicago on that same trip is Samuel Sennott, and we've remained friends ever since. Sam developed an AAC app for the iPhone and iPod Touch called Proloquo2Go, and even when it was first released, it was clear that when the iPad came out, this app would be a natural fit. The moment the first iPad was sold, Samuel was ready to turn it into a Big Box of Words.
Schuyler's been playing around with Proloquo2Go, and she's shown some intuitive aptitude for it. We're all about giving her different and multiple options for communication, and we have been all along, even before we found AAC. Proloquo2Go may very well become one of the tools she uses regularly. But after five years with Schuyler's Big Box of Words and then Pinkessa, we remain deeply committed to the Prentke Romich Company and to Unity, the Minspeak-based language system that their devices run and which, I believe, gave Schuyler her chance at the kind of life where her monster doesn't get to call the shots and write her story for her.
So if I woke up tomorrow and found myself suddenly running PRC, the very first thing I'd do would be to develop an app for the iPad that would run Unity. I'd sell it on iTunes, and I wouldn't sell it cheaply. I'd do this because I would know that even if I sold it for hundreds of dollars, people would buy it, gratefully. Not every user, certainly, or even most of them. PRC's devices facilitate use by just about anyone, and I suspect that many of their users, perhaps most of them, are not ambulatory enough to use a iPad. Schuyler's device is ready to be used with a wheelchair mount, a head switch, an eye gaze system, or any other number of facilitations for varying degrees of disability. Companies like PRC will continue to make and sell their amazing devices because they are changing the lives of people every day, and giving them voices.
One day, and perhaps not that long from now, those users will want integrated devices, too. PRC already makes a speech device/PC hybrid, and I suspect other manufacturers do as well. But as of now, for the users who are ambulatory and capable of using a device like the iPad, there are suddenly options, not just to communicate and to be able to afford an AAC-ready device without third party funding, but also to join the rest of the world in using some very cool technology and subsequently being, in a tangible way, part of the very cool crowd.
Trust me, that option for coolness means more to people like Schuyler than it does to you and me.
March 25, 2010
Twenty years
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.
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 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
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