September 30, 2009

Texas Book Festival schedule announced

Saving Your Children: Dads on an Uncertain Mission
with Michael Greenberg, Rupert Isaacson, and Robert Rummel-Hudson

Date: Saturday, October 31, 2009
Time: 12:00 - 1:00
Location: Capitol Extension Room E2.030


Being a parent is hard enough without having to cope with a sudden, inexplicable illness striking your child, challenging you in ways that seem inhumane. Even with today's modern medical advancements, there are still little to no explanations for what causes autism or severe psychotic episodes. In this session, three fathers who've had to confront such confounding illnesses in their children discuss their long, often arduous journeys to understanding and dealing with such issues that seem to have no explanation behind them. Michael Greenberg's teenage daughter was struck mad on a New York City street, Robert Rummel-Hudson's beautiful infant daughter soon revealed that a monster within her had stolen her ability to speak, and Rupert Isaacson seeks the guidance of Mongolian shamans as he tries to keep his five-year-old autistic son from unraveling completley. Antonio Ruiz-Camacho, an experienced journalist who is currently writing a memoir about his upbringing as a part of a Mexican mixed-class family and his relationship with his father, will moderate the session.

Authors:
Robert Rummel-Hudson
Rupert Isaacson
Michael Greenberg

Moderated by: Antonio Ruiz-Camacho

September 27, 2009

On Limits

I just read post by Anne Newman on the "Working Parents" blog, part of the online edition of BusinessWeek, titled "Do Kids with Disabilities Strain or Strengthen Our Schools?".

The bulk of the post involved Dan Habib, the father and filmmaker responsible for Including Samuel, which tells the story of his family's fight for inclusion for his son Samuel, who has cerebral palsy. The BusinessWeek post asks Habib about public acceptance of inclusion, and the citizens who are quoted sound identical to many whom I've heard from on the subject, including in the comments to my own blog. Habib's answer is brilliant.

But in this economy, just how much enthusiasm is Dan getting for inclusion? Not everyone is a fan—not by a long shot, judging by some of the comments on my blog last May. "Why do we even bother paying for education for these kids?," wrote a commenter named Lilly. "Their parents chose to have kids and now their disability and special needs amount to a rise in taxes. Their parents just get a lawyer and fight and fight until the school district ends up paying for special programs. Why? Why not divert the funds for gifted and talented students instead of kids who will need societal support their whole life."

Lilly's anger about how taxpayers' money is spent is not so uncommon. How many of us have heard the same complaint in our own school districts? And how many Lillys does Dan run into on his?

I pitched that question to him by e-mail, and he replied with a list of "myths and realities" about inclusion. One myth, he says, is the notion that taxpayers are throwing away money by educating kids with disabilities. His response: "How can Lilly or anyone else predict which child will contribute to our society? Would Lilly really argue that Bernie Madoff … added more to the world than the physicist Stephen Hawking (who wrote his greatest work after he was severely disabled by ALS)? How about Albert Einstein (widely thought to have had Asperger Syndrome), Helen Keller (blind, deaf, and unable to speak) and Vincent Van Gogh (mentally ill)? People are not limited by their disability, they are limited by a lack of opportunity."

"People are not limited by their disability, they are limited by a lack of opportunity."

I could try for a year to find the words to describe my own philosophy of inclusion, and I couldn't do better than that.

September 26, 2009

School of Hard Knocks

NPR reported on a new study ("Does Spanking Make Kids Dumber?") by Murray Straus, professor of sociology at the University of New Hampshire, which shows that children who are spanked have lower IQs. The results are being published in the fantastically-named Journal of Aggression, Maltreatment and Trauma.

In a study of American kids, Straus and a colleague asked parents of about 1,500 young children participating in an IQ research project how often they spanked their children.

The findings? The 2- to 4-year-old kids who weren't spanked at all, according to their parents, had IQs that were, on average, about five points higher after four years than the kids who were spanked. The same trend held for 5- to 9-year-olds, though the differences were less pronounced.
Straus doesn't pull any punches in his opinion of what this study means for parents, and for our society:

"It is time for psychologists to recognize the need to help parents end the use of corporal punishment and incorporate that objective into their teaching and clinical practice. It also is time for the United States to begin making the advantages of not spanking a public health and child welfare focus, and eventually enact federal no-spanking legislation."

I don't say this very often, but I think NPR was being extremely lazy in the way they chose to present this information. I don't think spanking your kids makes them dumb. I don't believe that those of you out there who choose to strike your children are actually beating their brains out of their little heads.

I do think that, in general, people with poor communication skills and a lack of education are less equipped to deal with their children in a logical, intelligent way. As a result, they lose their tempers more quickly, turn to violence and frustration more easily and, most importantly, teach those same "skills" to their kids.

Or perhaps it is simply the fact that the same intellectual incuriosity that leads these families to turn to violence to address their issues is also present in other areas of their intellectual development. Smart people don't hit their kids? Perhaps they don't need to. I would suggest that contrary to what the NPR headline suggests, it's not the kids who are made dumber by being hit.

I've written about my feelings on corporal punishment before. ("Spare the child", July 2006) It was a pretty comprehensive statement on corporal punishment, so I don't think I need to say it all again. But I think the last few paragraphs bear repeating. My feelings haven't changed one bit, except that I believe them more strongly than ever.

"You know, I was spanked as a child, and I grew up to be perfectly healthy and have raised my kids just fine."

Did you? You think? You were, as a small child, routinely subjected to violence by someone probably five times your size so that you would be subject to their demands? As a result, you grew up, had some small children of your own, and then proceeded to beat them into submission as well?

We have a different definition of "perfectly healthy", you and I. We have a wildly different idea of what it means for an innocent child to be "just fine".

You may think that I believe that if you as a parent spank your children, I automatically believe that you are a bad parent. I don't, not necessarily and not without knowing what kind of parent you are as a whole. Nor do I think your children are necessarily going to grow up to be damaged.

But I do think you are wrong. And as much as you might feel sorry for my kid for having me as a father, I guarantee I feel more sorry for yours.


September 23, 2009

Things to do in Wylie TX on a Thursday night


September 24, 2009
Author appearance
The Authors Express Event
Sponsored by the Wylie and Sachse Public Libraries
Bart Peddicord Community Center
100 West Oak Street
Wylie TX 75098

The Authors Express features local authors at Barnes and Noble, Firewheel, Sachse, and Wylie from Saturday, September 19 through Monday, September 28.

Authors Express Kick-off at Barnes and Noble featuring Paranormal authors Maria Lima, Lorraine Heath, and Sandy Blair on Saturday, September 19 at 2:00pm.

Maria Lima, author of Matters of the Blood talks about her book at the Wylie City Hall on Monday, September 21 at 7:00pm.

William Manchee, author of the Tarizan series, will present a talk on Tuesday, September 22 at 7:00pm at the Sachse Public Library.

Robert Rummel-Hudson, author of Schuyler’s Monster, will talk about his experiences with his learning disabled child. Rummel-Hudson will speak on Thursday, September 24 at 7:00pm at the Wylie Community Center.

Frank Luksa, author of Cowboys Essential: Everything You Need to Know to Be a Real Fan will be at the Sachse Public Library on Thursday, September 24 at 7:00pm.

Bob Huffaker and Bill Mercer, were reporters at the Kennedy assassination. When the News Went Live describes their experiences. Join them at the Sachse Public Library on Monday, September 28 at 7:00pm.

The Authors Express is a partnership with Barnes and Noble, Firewheel, the Sachse Public Library, the Smith Public Library, the Friends of the Sachse Library and the Friends of the Smith Library.

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(And yes, Schuyler will be there.)

September 16, 2009

A Bad Word: UPDATE

First of all, Schuyler's ARD meeting went very well, as they usually do.

Well, okay, stop. Before I get to that "first of all", I should actually define what that means, for those of you who don't know. Here's how the Texas Education Agency's A Guide to the Admission, Review and Dismissal Process defines the ARD committee:

Admission, Review, and Dismissal (ARD) Committee: The admission, review, and dismissal (ARD) committee is composed of a student’s parent(s) and school personnel who are involved with the student. The ARD committee determines a student’s eligibility to receive special education services and develops the individualized education program (IEP) of the student.

So yes, this meeting went well. Now that we're in Plano, ARD committee meetings usually run pretty smoothly. We all tend to be on the same page, after all, and the members of Schuyler's team seem to take us seriously and behave as if they are genuinely happy that we're as involved as we are. Our input seems to drive these meetings, which is as it should be, and yet I know better than to believe that's how most parents feel when they are meeting with their kid's IEP committee.

The issue of the three-year evaluation was only discussed in passing since we put it off until early next year. No one seemed to mind; I actually felt an almost palpable sense of relief in the room. In talking to Schuyler's teacher after the meeting, we learned a little bit more about the process. It looks like we do in fact have the option of choosing not to have this evaluation administered, and since she already qualifies for special education services, there doesn't appear to be anything she'd stand to lose by skipping it.

We're all going to follow up to find out if there are doors to services that might actually be opened by this test, but unless they include a free pony, I can't imagine why would would go through with it. The benefits (aside from possible additional federal reimbursements for the school district) seem intangible at this point. The consequences, on the other hand, seem all too real.

This is hard. Even if she never takes the test, it's still out there. The word is still there, and there's at least one person on Schuyler's team who seems eager to attach it to her. Not out of any malevolent intent, but because in her eyes, it's important knowledge, and knowledge is power.

Except to me, it isn't, not when this knowledge is gained through questionable means. And make no mistake. Assigning an IQ score to a non-verbal child is a subjective process at best. One commenter on my last post put it best:

"To administer the test via AAC breaks the procedural integrity of the test. The norm table that the scores are based on are set using a sample of speaking children. […] The testing may bring some valuable insights to her reasoning, an error analysis might teach the team some things about deficits that may be addressed, but the number is not valid. Unfortunately, numerical scores are easier to read while you are skimming a report than the paragraph of disclaimers that dismiss that number as questionable."

I know that the lens of fatherhood is coloring my thoughts and judgments on this issue, and Julie's objectivity is equally suspect. But I asked myself a question, and in my answer to that question, I knew the right thing to do. My question was simply this. Which would I feel comfortable with as a mistake, one for which I might find myself apologizing to Schuyler one day? My decision to skip a test that might have possibly helped her out of my fear of stigmatization for her? Or a decision to allow someone to attach that awful word to her, despite being mindful of the risk, all on a stranger's assurance that doing so might ultimately benefitted her one day?

That was easy. We don't get many simple or straightforward questions where Schuyler's future is concerned, but that one was no challenge at all.

A Bad Word

There's a word that people in the disability community get very worked up about, and perhaps rightly so. It's a word packed with powder, ready to be ignited by a callous popular culture. And yet, I never joined in any of the "Spread the Word to End the Word" campaigns, nor did I join in the indignant angry protests at the use of this word in the movie Tropic Thunder. (The latter is primarily due to the fact I felt that in the particular case of Tropic Thunder, the word was being used in a way that aimed cutting humor not at those with disabilities, but at the shallow Hollywood entities who have used those with disabilities as vehicles to Oscar success.) I understand the outrage at the word, both in that case and in general, but in the same way that I've rejected the "universal" acceptance of People First Language, it's not a cause that resonates with me.

This is not to say that I'm never put off by that word. I find it offensive when it wanders too close to my weird and wonderful monster slayer. It is then that I rise up against it. Not when it is used casually or ignorantly, but rather when it arrives with full authority into my world. Insensitive teenagers and edgy comedians don't have power. Professionals do, at least as much as we allow them to have, which is plenty.

We had a meeting yesterday with Schuyler's teacher and the school's diagnostician in preparation for Schuyler's annual ARD meeting later this morning, where her IEP for the coming year will be finalized. With our permission, this diagnostician evaluated Schuyler three years ago, despite my reservations, because the school felt it was important to get a clear idea of where Schuyler stood cognitively.

This evaluation three years ago would determine her IQ (a frankly subjective process of which I am skeptical when it comes to assigning a score to a non-verbal six-year-old), and that IQ rating would put her into a cognitive range. My fear was that this numerical determination would place her within the range described by this word, this very loaded word that I felt had no place hanging around the neck of my determined and bright little girl.

Three years ago, we swallowed our hesitation, trusting in this new school and these new teachers for whom we had moved so willingly. The test was administered, a number was assigned that was high enough to dodge the word, and we went on with our lives.

Last week, we were informed that the diagnostician wants to re-evaluate Schuyler, and we set up yesterday's meeting to discuss that evaluation. And it was at this meeting that Julie and I were gently informed by the diagnostician that based on Schuyler's problems with abstract thinking and her significant delays in her academic and verbal skills, she feels confident that the new test score is almost certain to be significantly lower.

Low enough to assign that word to my little girl.

The diagnostician wants this word to become part of Schuyler's lexicon, not because she has a bad soul, but because she wants Schuyler to become eligible for additional services that this new assignment would bring. She wanted to do the test soon, but suggested that if we wanted, we could wait until after the holidays. "I just need to administer it by May," she told us.

I'm unconvinced. I'm unconvinced that there are services that Schuyler isn't receiving that this bad word would suddenly bring her. I'm unconvinced that these additional services would be enough to balance the feeling of wrongness at having this word, this fighting word of all fighting words, attached forever to Schuyler. It's not a word that can ever be taken away. It's a bell that can never be unrung.

But the bulk of my anxiety tonight comes from the fact that the diagnostician might be right. She's likely to be right, and in fighting this word, I may simply be living in denial, to no one's advantage.

Today's ARD meeting will be a hard one, and we will be listening very carefully to hear what the advantages to having this evaluation really are. More importantly, I want to know what happens if we ultimately decline (or refuse, I guess) to have the evaluation performed at all.

Don't be surprised if I elect not to share the final results of this evaluation, should it actually take place, and please don't feel insulted if we choose to keep it to ourselves. In this blog and even more so in my book, I haven't granted Schuyler a great deal of privacy, for which I don't feel guilt but do often feel trepidation.

But this is different. This is a word, a very bad word, that I will fight, rightly or wrongly, from ever being associated publicly with my sweet and ferocious and clever little girl.

September 7, 2009

Here's how he's going to destroy your children, America.


Okay, I was wrong. The White House has released the text of President Obama's speech to schoolkids tomorrow, and the Conservatives were right. It's nothing less than a manifesto for turning your kids into little Socialist zombies. God, I only wish I'd listened to you. All I can say is that I am so, so sorry. America, I'll miss you. I should have listened. Oh God, why, WHY DIDN'T I LISTEN???

Here's the full text, so you can read for yourself the horrifying vision this man has for the future. Whatever you do, however, don't let your kids read it. Or any persons with sensitive constitutions, particularly pregnant women. Obama will turn your fetuses into Socialists, too. Don't think he won't do it.

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Prepared Remarks of President Barack Obama
Back to School Event


Arlington, Virginia
September 8, 2009



The President: Hello everyone – how’s everybody doing today? I’m here with students at Wakefield High School in Arlington, Virginia. And we’ve got students tuning in from all across America, kindergarten through twelfth grade. I’m glad you all could join us today.

I know that for many of you, today is the first day of school. And for those of you in kindergarten, or starting middle or high school, it’s your first day in a new school, so it’s understandable if you’re a little nervous. I imagine there are some seniors out there who are feeling pretty good right now, with just one more year to go. And no matter what grade you’re in, some of you are probably wishing it were still summer, and you could’ve stayed in bed just a little longer this morning.

I know that feeling. When I was young, my family lived in Indonesia for a few years, and my mother didn’t have the money to send me where all the American kids went to school. So she decided to teach me extra lessons herself, Monday through Friday – at 4:30 in the morning.

Now I wasn’t too happy about getting up that early. A lot of times, I’d fall asleep right there at the kitchen table. But whenever I’d complain, my mother would just give me one of those looks and say, "This is no picnic for me either, buster."

So I know some of you are still adjusting to being back at school. But I’m here today because I have something important to discuss with you. I’m here because I want to talk with you about your education and what’s expected of all of you in this new school year.

Now I’ve given a lot of speeches about education. And I’ve talked a lot about responsibility.

I’ve talked about your teachers’ responsibility for inspiring you, and pushing you to learn.

I’ve talked about your parents’ responsibility for making sure you stay on track, and get your homework done, and don’t spend every waking hour in front of the TV or with that Xbox.

I’ve talked a lot about your government’s responsibility for setting high standards, supporting teachers and principals, and turning around schools that aren’t working where students aren’t getting the opportunities they deserve.

But at the end of the day, we can have the most dedicated teachers, the most supportive parents, and the best schools in the world – and none of it will matter unless all of you fulfill your responsibilities. Unless you show up to those schools; pay attention to those teachers; listen to your parents, grandparents and other adults; and put in the hard work it takes to succeed.

And that’s what I want to focus on today: the responsibility each of you has for your education. I want to start with the responsibility you have to yourself.

Every single one of you has something you’re good at. Every single one of you has something to offer. And you have a responsibility to yourself to discover what that is. That’s the opportunity an education can provide.

Maybe you could be a good writer – maybe even good enough to write a book or articles in a newspaper – but you might not know it until you write a paper for your English class. Maybe you could be an innovator or an inventor – maybe even good enough to come up with the next iPhone or a new medicine or vaccine – but you might not know it until you do a project for your science class. Maybe you could be a mayor or a Senator or a Supreme Court Justice, but you might not know that until you join student government or the debate team.

And no matter what you want to do with your life – I guarantee that you’ll need an education to do it. You want to be a doctor, or a teacher, or a police officer? You want to be a nurse or an architect, a lawyer or a member of our military? You’re going to need a good education for every single one of those careers. You can’t drop out of school and just drop into a good job. You’ve got to work for it and train for it and learn for it.

And this isn’t just important for your own life and your own future. What you make of your education will decide nothing less than the future of this country. What you’re learning in school today will determine whether we as a nation can meet our greatest challenges in the future.

You’ll need the knowledge and problem-solving skills you learn in science and math to cure diseases like cancer and AIDS, and to develop new energy technologies and protect our environment. You’ll need the insights and critical thinking skills you gain in history and social studies to fight poverty and homelessness, crime and discrimination, and make our nation more fair and more free. You’ll need the creativity and ingenuity you develop in all your classes to build new companies that will create new jobs and boost our economy.

We need every single one of you to develop your talents, skills and intellect so you can help solve our most difficult problems. If you don’t do that – if you quit on school – you’re not just quitting on yourself, you’re quitting on your country.

Now I know it’s not always easy to do well in school. I know a lot of you have challenges in your lives right now that can make it hard to focus on your schoolwork.

I get it. I know what that’s like. My father left my family when I was two years old, and I was raised by a single mother who struggled at times to pay the bills and wasn’t always able to give us things the other kids had. There were times when I missed having a father in my life. There were times when I was lonely and felt like I didn’t fit in.

So I wasn’t always as focused as I should have been. I did some things I’m not proud of, and got in more trouble than I should have. And my life could have easily taken a turn for the worse.

But I was fortunate. I got a lot of second chances and had the opportunity to go to college, and law school, and follow my dreams. My wife, our First Lady Michelle Obama, has a similar story. Neither of her parents had gone to college, and they didn’t have much. But they worked hard, and she worked hard, so that she could go to the best schools in this country.

Some of you might not have those advantages. Maybe you don’t have adults in your life who give you the support that you need. Maybe someone in your family has lost their job, and there’s not enough money to go around. Maybe you live in a neighborhood where you don’t feel safe, or have friends who are pressuring you to do things you know aren’t right.

But at the end of the day, the circumstances of your life – what you look like, where you come from, how much money you have, what you’ve got going on at home – that’s no excuse for neglecting your homework or having a bad attitude. That’s no excuse for talking back to your teacher, or cutting class, or dropping out of school. That’s no excuse for not trying.

Where you are right now doesn’t have to determine where you’ll end up. No one’s written your destiny for you. Here in America, you write your own destiny. You make your own future.

That’s what young people like you are doing every day, all across America.

Young people like Jazmin Perez, from Roma, Texas. Jazmin didn’t speak English when she first started school. Hardly anyone in her hometown went to college, and neither of her parents had gone either. But she worked hard, earned good grades, got a scholarship to Brown University, and is now in graduate school, studying public health, on her way to being Dr. Jazmin Perez.

I’m thinking about Andoni Schultz, from Los Altos, California, who’s fought brain cancer since he was three. He’s endured all sorts of treatments and surgeries, one of which affected his memory, so it took him much longer – hundreds of extra hours – to do his schoolwork. But he never fell behind, and he’s headed to college this fall.

And then there’s Shantell Steve, from my hometown of Chicago, Illinois. Even when bouncing from foster home to foster home in the toughest neighborhoods, she managed to get a job at a local health center; start a program to keep young people out of gangs; and she’s on track to graduate high school with honors and go on to college.

Jazmin, Andoni and Shantell aren’t any different from any of you. They faced challenges in their lives just like you do. But they refused to give up. They chose to take responsibility for their education and set goals for themselves. And I expect all of you to do the same.

That’s why today, I’m calling on each of you to set your own goals for your education – and to do everything you can to meet them. Your goal can be something as simple as doing all your homework, paying attention in class, or spending time each day reading a book. Maybe you’ll decide to get involved in an extracurricular activity, or volunteer in your community. Maybe you’ll decide to stand up for kids who are being teased or bullied because of who they are or how they look, because you believe, like I do, that all kids deserve a safe environment to study and learn. Maybe you’ll decide to take better care of yourself so you can be more ready to learn. And along those lines, I hope you’ll all wash your hands a lot, and stay home from school when you don’t feel well, so we can keep people from getting the flu this fall and winter.

Whatever you resolve to do, I want you to commit to it. I want you to really work at it.

I know that sometimes, you get the sense from TV that you can be rich and successful without any hard work -- that your ticket to success is through rapping or basketball or being a reality TV star, when chances are, you’re not going to be any of those things.

But the truth is, being successful is hard. You won’t love every subject you study. You won’t click with every teacher. Not every homework assignment will seem completely relevant to your life right this minute. And you won’t necessarily succeed at everything the first time you try.

That’s OK. Some of the most successful people in the world are the ones who’ve had the most failures. JK Rowling’s first Harry Potter book was rejected twelve times before it was finally published. Michael Jordan was cut from his high school basketball team, and he lost hundreds of games and missed thousands of shots during his career. But he once said, "I have failed over and over and over again in my life. And that is why I succeed."

These people succeeded because they understand that you can’t let your failures define you – you have to let them teach you. You have to let them show you what to do differently next time. If you get in trouble, that doesn’t mean you’re a troublemaker, it means you need to try harder to behave. If you get a bad grade, that doesn’t mean you’re stupid, it just means you need to spend more time studying.

No one’s born being good at things, you become good at things through hard work. You’re not a varsity athlete the first time you play a new sport. You don’t hit every note the first time you sing a song. You’ve got to practice. It’s the same with your schoolwork. You might have to do a math problem a few times before you get it right, or read something a few times before you understand it, or do a few drafts of a paper before it’s good enough to hand in.

Don’t be afraid to ask questions. Don’t be afraid to ask for help when you need it. I do that every day. Asking for help isn’t a sign of weakness, it’s a sign of strength. It shows you have the courage to admit when you don’t know something, and to learn something new. So find an adult you trust – a parent, grandparent or teacher; a coach or counselor – and ask them to help you stay on track to meet your goals.

And even when you’re struggling, even when you’re discouraged, and you feel like other people have given up on you – don’t ever give up on yourself. Because when you give up on yourself, you give up on your country.

The story of America isn’t about people who quit when things got tough. It’s about people who kept going, who tried harder, who loved their country too much to do anything less than their best.

It’s the story of students who sat where you sit 250 years ago, and went on to wage a revolution and found this nation. Students who sat where you sit 75 years ago who overcame a Depression and won a world war; who fought for civil rights and put a man on the moon. Students who sat where you sit 20 years ago who founded Google, Twitter and Facebook and changed the way we communicate with each other.

So today, I want to ask you, what’s your contribution going to be? What problems are you going to solve? What discoveries will you make? What will a president who comes here in twenty or fifty or one hundred years say about what all of you did for this country?

Your families, your teachers, and I are doing everything we can to make sure you have the education you need to answer these questions. I’m working hard to fix up your classrooms and get you the books, equipment and computers you need to learn. But you’ve got to do your part too. So I expect you to get serious this year. I expect you to put your best effort into everything you do. I expect great things from each of you. So don’t let us down – don’t let your family or your country or yourself down. Make us all proud. I know you can do it.

Thank you, God bless you, and God bless America.

September 5, 2009

Citizen Rob: UPDATE

(From the Dallas Morning News Plano Blog, emphasis theirs)

4:49 PM Fri, Sep 04, 2009
Matthew Haag/Reporter

I'm getting emails from schools and a call from a parent saying that Plano ISD has reversed its initial decision to not show any of President Barack Obama's planned speech to schoolchildren Tuesday. Plano ISD originally said the speech wouldn't be shown live and that a link to the speech would be added to Plano ISD's Web site.

The speech still won't be shown live, but Plano ISD has let each school decide whether they want to show it a day or so later. For example, Schimelpfenig Middle School will show the speech Thursday between between 2:50 p.m. to 3:30 p.m. A parent whose daughter attends Plano East Senior High School said the school will air the speech after Tuesday, as well. And students who don't want to watch it must go to the school cafeteria and work on a brief assignment.

"It sounds like punishment to me," said the parent, who refused to give me her name.

I have a suggestion for that brief assignment:

"Research the actual definition of 'Socialism'. Compare and contrast what you discover with the inane bullshit your parents have told you about Socialism and how it applies to the president. Bonus points will be awarded for epiphanies regarding anything else your parents might have told you over the years."

September 4, 2009

2009 Texas Book Festival


Yesterday, former First Lady Laura Bush announced the author lineup for the 2009 Texas Book Festival, and lo and behold, I was on the list. I've actually known about this for a while, but was sworn to secrecy until yesterday's announcement. I wouldn't want to steal Mrs. Bush's thunder anyway. Her life can't be a picnic on the best of days.

(Because my narcissism is as vast as the sea, I actually spent yesterday evening looking for video of the announcement, just to see if she actually read my name off a list. I have Issues.)

Anyway, it's official now, and I'm happy as a clam (clams being notoriously jolly and well-adjusted mollusks). From the moment I found out that Schuyler's Monster was going to be published, I wanted to be a part of the Texas Book Festival. Back in my Austin days when I was employed at the big fancy Barnes & Noble Arboretum, I actually worked at one of the festivals, selling books. Coming back as an author feels like a real homecoming, and I'm thrilled that my book was selected this year.

(Congrats also to my friend, the very cool Gwen Zepeda, who will be presenting as both a children's author and novelist. Nobody likes a showoff.)

The schedule of events hasn't been released yet, and I'm not sure if this is supposed to be a secret, too. (I hope not, because here I go.) Apparently I am to appear on a panel with Rupert Isaacson, author of The Horse Boy: A Father's Quest to Heal His Son (about his efforts to reach his autistic son through equine therapy and Mongolian spiritualism) and Michael Greenberg, author of Hurry Down Sunshine: A Father's Story of Love and Madness (about his experience as a father with his teenage daughter's sudden manifestation of bipolar disorder). I've read Greenberg's book, which is really exceptional, and I'm working on the Isaacson now.

Both of their books have received a tremendous amount of critical acclaim and media attention, and I'm really honored and pleased to be able to join them as we talk about… whatever we talk about. As I said, the panel information is still being put together, but I'm going to go out on a limb and predict that we'll be discussing fatherhood and our relationships with the "different" child. Because otherwise, I might need to learn about horses in a hurry.

If you're in Austin at the end of October, I hope you'll attend. Schuyler will be there, and she's as jazzed as ever about her participation in all the book madness. Yesterday she was showing me a new book she'd gotten. She pointed to the cover of Judy Moody Gets Famous! and then pointed to herself.

"Like me!" she said.

Princess Protagonista. I've created a monster.

September 3, 2009

Citizen Rob

The Plano Independent School District initially planned to broadcast President Obama's September 8 address to the nation's school children, but after a much-publicized letter by a local conservative parent, the Plano ISD made the following policy decision:
Upcoming Presidential Address

The United States Department of Education sent a letter to all school districts on August 25 announcing a presidential address to school children on Tuesday, September 8. The topic of this public broadcast is the importance of education. To clarify questions and concerns about this presidential address, Plano ISD notes the following:
  • This event is not a component of the Plano ISD curriculum and is therefore not a mandatory activity.
  • Viewing the broadcast is not a planned classroom activity for September 8.
  • Like many historical events, the address will be made available for students and teachers via the digital video library.
  • The video will also be posted on this home page.
As much water as I have carried for this school district and its commitment to education and to community, I can't tell you how disappointed I am. I've heard the arguments, about how that scary socialist Obama is going to hypnotize our precious children and read Karl Marx to them. I'm sure I'll read some more of those arguments in the comments of this blog.

Here's the thing. HE'S THE PRESIDENT OF THE UNITED STATES. Much like Ronald Reagan was the President of the United States when he spoke to the students of America, Barack Obama was elected by the majority of the citizens of this country. I think it's safe to assume that at least some of those citizens DON'T hate America. I can't tell you how many times I heard conservatives go on about respecting the office of the president during the years that said office was being held by George Bush. And all that talk? Complete and total lip service.

The simple truth is that for all our talk about patriotism and love of our country, Americans have completely lost their sense of community. You see it in the arguments against providing health care for every American, because it might have some small detrimental effect on some people's bottom line, and that, friends, is socialism, plain and simple. You see it in the "us versus them" in our political dialogue. You see it every time you hear someone describe an America that only reflects their ideology and rejects the beliefs of other citizens.

Where does your community end, America? Does it stop at the wall surrounding your gated neighborhood? The boundaries of your church, or your political party headquarters? Because if your community stops anywhere short of the edge of the map, then you are not a patriotic American. You are the problem.

I was especially annoyed to see the president of the Plano ISD Council of PTAs, Cara Mendelsohn, quoted by The Associated Press as saying that President Obama is "cutting out the parent" by sneakily addressing students while they are in school. This is the PTA President, being quoted in her capacity in that position. Does her conspiracy theory represent that of the Plano ISD PTA? Should it?

I was annoyed, but also intrigued. Oddly enough, the Plano PTA's site doesn't seem to prominently display information on how to actually join the PTA, but that's okay. I'm a smart guy. I can find it.

Insult + Injury

So I've been having a pretty sorry run of luck in recent years where television is concerned.

This past year or so has been particularly bad, with the (planned) ending of my favorite show, Battlestar Galactica. (The new, bleak, 9/11-metaphor version, obviously, not the goofy Tribute to Feathered Hair from 1979.) I didn't like having to deal with BSG going away, not at all. But almost as bad was the cloud of doom that seemed to be hanging over my other favorite show, a phenomenally well-written and well-acted cop drama on NBC called Life.

My worst fears were realized when NBC decided to give Jay Leno his own show five days a week during prime time. Not being very industry savvy, apparently, I was confused. Doesn't Leno already have a show five nights a week, conveniently programmed at a time when I can easy avoid it? Ah, yes, but this new show will air at 9pm Central, during the time that was usually reserved for dramas. Sure enough, NBC cancelled Life after only two seasons.

It occurs to me that NBC and high-quality L.A. cop dramas are not a match made in heaven. (Look out, Southland, which is a great show but one that I am trying not to fall for, lest it break my heart, too.) First came Boomtown, easily the best show I have ever seen on television, after one season. I've still never gotten over that one. Then came Raines, also done by the same writer and producers of Boomtown and Band of Brothers. Raines only lasted for seven episodes, even though it starred Jeff Goldblum. Come on, NBC. Jeff Goldblum? You don't cancel Jeff Goldblum. Jeff Goldblum cancels YOU.

Anyway, I recently ordered the newly released box set of Life: Season 2, and it arrived yesterday. It was bittersweet, of course, but I decided to make the best of it, right up until I opened the case and saw the ad that NBC included with the set.

Dick move, NBC. You are dead to me.

August 26, 2009

Our gratitude will almost certainly be inadequate


I'm bracing myself for the Conservative backlash against the commemorations already beginning in honor of Senator Edward Kennedy, who passed away last night. Those of you who feel like doing a little dance on the man's grave would be well advised to do it far away from me or my family, or any of the tens of thousands of families just like ours. Or, if you really look at it, probably families just like yours, too. I challenge any of you to show me a politician of either party within the last century whose legislative actions have done so much to help Americans, in ways that have a direct impact on their lives.

Here's a very short, woefully incomplete list of why I'm not particularly interested in hearing why you didn't care for Ted Kennedy. I'll bet you can find at least two pieces of legislation on this list, laws molded in part or entirely by Senator Kennedy, that have literally saved my daughter's future. Hers, and countless more just like her, both living and not yet even born.

1964: Head Start
-- Provided meals and early education to pre-school children through the Employee Opportunity Act. (Schuyler participated in a Head Start program when she was a baby. It was part of the early intervention program that probably saved her.)

1971: Federal Cancer Research Program
-- Quadrupled the amount of money spent by the federal government to fight cancer.

1972: Title IX
-- Demanded equal funding for men's and women's athletics on college campuses.

1975: Individuals with Disabilities Education Act (IDEA)
-- Guaranteed free and appropriate public education to children with disabilities. (This is the law that provides for Schuyler's education, and for EVERY SINGLE CHILD WITH A DISABILITY in public schools in this country. Every single one of them. Think about that for just a moment.)

1978: Civil Rights Commission Act Amendments
-- Expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability.

1984: Improved Access to Polling Stations
-- Required polling stations to provide physical accessibility for physically disabled and elderly people on federal election days.

1986: Employment Opportunities for Disabled Americans Act
-- Allowed disabled workers to receive SSI benefits and Medicaid coverage.

1988: Fair Housing Act Amendments
-- Prohibited discrimination towards people with disabilities in the sale or rental of housing.

1989: National Military Child Care Act
-- Established the Department of Defense child care system.

1990: Americans with Disabilities Act
-- Prohibited discrimination against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement and training. (This is another big one for Schuyler and her friends. There are people in this country whose lives, and the quality of those lives, have been saved by this law. That's not even remotely an exaggeration.)

1990: Ryan White CARE Act
-- Provided assistance to states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care.

1993: National and Community Service Trust Act
-- Created AmeriCorps and the Corporation for National and Community Service to help expand volunteerism and education grants for students who choose to volunteer for service after college.

1993: Student Loans
-- Allowed students to borrow money for college directly from the federal government.

1994: Family and Medical Leave Act
-- Provided up to 12 weeks of unpaid leave for family emergencies or after the birth of infants.

1994: Crime Act
-- Secured funding for 100,000 new police officers, imposed new penalties for crimes involving gangs and firearms and authorized the Police Corps, a program to award college scholarships to students in return for a commitment to serve as police officers.

1996: Kennedy-Kassebaum Act
-- Enabled employees to keep health insurance after leaving their job and prohibited insurance companies from refusing to renew coverage on the basis of preexisting medical conditions.

1996: Mental Health Parity Bill
-- Eliminated limits on mental health coverage that differ from other covered illnesses.

1997: State Children's Health Insurance Program (SCHIP)
-- Supported state efforts to provide health insurance to uninsured children in low-income families.

2000: Minority Health and Health Disparities Research and Education Act
-- Improved data systems and research on the extent and severity of minority health problems, and authorized significant resources to help enhance the delivery of health care to minorities.

2001: No Child Left Behind Act
-- Required more rigorous testing of public school students and permitted parents to transfer their children from low-performing to higher-performing schools. (Clearly I've had issues with the implementation of this law, but the philosophy behind it is sound, and even in its flawed state, it has helped a lot of kids with disabilities.)

2006: Family Opportunity Act
-- Provided states the opportunity to expand Medicaid coverage to children with special needs and allowed low- and middle-income families with disabled children the ability to purchase coverage under the Medicaid program.

-----

Senator Kennedy, on behalf of those who are unable to say it for themselves, thank you for your service to this country.

August 22, 2009

"This is important stuff..."


Pinkessa
Originally uploaded by Citizen Rob
I recently saw a post on an AAC users forum by an actual end user, in which she expressed her frustration at the process for getting a speech device approved for her own use. In order to even see and evaluate a device, she was required to have an evaluation performed by a licensed clinician. This isn't unusual, particularly when outside funding is being secured. It makes perfect sense on paper. In reality, a number of obstacles related mostly to human ego and a lack of understanding seem to complicate the process almost every time.

I could write a book about those obstacles. Oh, wait. I already did.

The responses to this post seemed to fall in three categories. There were users or parents of users who agreed with the original poster's frustrations. Then there were a few professionals who agreed on some level that the system has serious flaws.

There were a number of professionals who came on to defend the system. I don't have anyone's permission to quote them directly, but much of it boiled down to a few basic points:
  • A qualified professional needs to assess the user's capabilities and needs before recommending appropriate products.
  • If someone else is providing the funding for assistive technology, they should have a right to determine whether those resources are being spent responsibly.
I know this is probably a little uncool, but I'm going to quote a few lines that I think are relevant to the discussion, from both sides of the issue.

"When spending the limited resources for medical devices and assistive technology, those who are spending the money have a responsibility to get the 'most bang for the buck.' It doesn't make sense to provide a high-end device like Eco or Pathfinder for a person who has limited communication ability..."

"In an ideal system, the consumer could try out numerous devices and get the advice of an SLP as a consultant as needed. Sadly the system is set up not to let the consumer do the research and testing and make the decision but to put people in the middle -- a doctor to determine if a device is 'medically necessary' (as if anyone would think that access to communication might not be medically necessary, although this does happen sometimes) and a speech language pathologist, for instance, to be responsible for approving the use of funding for a given device. It is a medical model approach that provides accountability for the use of funds, and it is not a truly person-centered approach."

"I know it seems like you should be the one to choose the device you want — and I agree that you should have a big say in the decision — but from the point of view of the funding agency, the device has to meet your needs first. Then all things being equal, which of the devices that meet your needs do you like best?"

(An actual end user, in response to that one)
"As an American who believes in capitalism and consumer rights (along with other freedoms), the consumer should not have a 'big say' in the decision, they should have the FINAL say in the decision. I see absolutely no reason why a vendor should not allow a consumer to demo any device they want - that is the WHOLE POINT of being a sales rep - to be able to sell a product - and then if the consumer decides he/she likes the device and it is the best for their needs and desires, they work with the clinician to secure funding. A clinician should never be the one to tell the consumer which devices to pick from, unless they are asked for advice - or unless they think the consumer may be interested in another device the consumer is unaware about."

"The discussion appears to be giving a lot of attention to explaining why things are the way they are and justifying them through some interesting examples. Perhaps it would be helpful to consider this perspective: self-determination, which comes from within the individual and is a driving force for growth and progress, is fostered by leading one's life and thus 'having the final say' in issues small and big."

Anyway, you probably knew this was coming, but I contributed a little somethin' somethin' to the discussion. You could probably also predict that my post would be verbose and sanctimonious. If so, you'd be two for two.



But here's the thing. When you talk about someone having "limited communication ability", who's determining those limits? You? An SLP? A doctor, or an educator? An independent evaluator? Most importantly, is it someone who has a direct hand in determining how the money is spent, and how much there is to spend?

A lot of you know my family's story, but here's a "short" version. We have a binder full of reports by professionals, mostly from about five years ago) who were ostensibly objective in their evaluations of my daughter's lack of speech (due to polymicrogyria). These reports document, in the most authoritative terms, the limits of her communication abilities and the future we could reasonably expect for her. They establish that her reading skills would be limited, that she would probably never be able to write by hand, and that she would almost certainly remain an unsuitable candidate for inclusion because of her communication issues and her cognitive deficiencies.

There are two points I wish to make about these evaluations. First of all, they were wrong, almost every one of them. She now attends a program where she spends part of her day in an AAC-centric classroom and the rest of the day in a mainstream, age-appropriate classroom with the help of an aid and her speech device. There was no need for her ARD committee to override the TAKS reading test results (the Texas implementation of No Child Left Behind) to allow her to move on to the fourth grade, because she passed that test on her own. And every time we do a book signing event, she is there to sign her name, in chunky but clear letters in pink pen, at the top of the title page. If she DOESN'T graduate from high school, it will be because she chooses not to, not because of these predetermined limitations. Every professional evaluation that was done on her less than five years ago got it wrong. Every single one of them spoke, with utmost professional confidence, of her "limited communication ability".

The second point I need to make here is the crux of the issue. It is simply this: the professionals who made these evaluations were responsible for determining the appropriate AAC device for my daughter to use. They had the ultimate purchasing power, and their "recommendations" were final. When we determined that a high-end device (in our case, the PRC Vantage) showed the most promise for her, our request was overridden. The school chose to purchase a much simpler device with a limited vocabulary (and from another company, one with which they already had a professional relationship). They made a choice that, to them, gave them "the most bang for their buck".

And the only reason we were able to decline their purchase and go it alone was that I had been writing about my daughter for years and was able to do a successful online fundraiser. I had access an independent resource that very, very few parents have. And the only people who were willing to fight for her basic human right for a high-end device that MIGHT have turned out to be appropriate for her future needs were her mother and I, and the PRC rep whom we contacted and met with INDEPENDENTLY, because our daughter's team at her school would not facilitate that meeting for us.

My daughter is moving forward. She's excelling in school and she's communication successfully. Even her verbal speech is improving, despite an almost universal determination five years ago that it would never be a viable form of communication for her. And she's having this success because her AAC device has given her unlimited opportunities, and she's been allowed to determine exactly how limited her communication abilities are.

I have been speaking to hundreds of parents and SLPs and teachers over the past year and a half, and the thing that strikes me again and again is how many of them have similar stories. Professional underestimation of the capabilities of nonverbal individuals is epidemic. From these conversations I've had, I can say one thing with absolute certainty. The biggest problem in assistive technology funding is NOT that people are spending too much money on high-end devices that the end user will never be able to fully utilize.

If you are spending someone else's money, then yes, you have a responsibility to do so wisely. You need to research your options carefully, and you should have access to professionals who can guide you when needed. But should receiving money from another source mean accepting limits to independent access to vendors, or any other "controls" that take the final decision-making authority away from the end user (or their parents, as is often the case)?

With all due respect to [names redacted], you are both coming at this from professional perspectives. For many of us out in the trenches, the reality is that industry professionals have let us down, often on multiple occasions. And that's fine, in a way. We're all human beings, and every person with a disability has unique needs and limitations that can be hard to identify. We understand when you get it wrong. But you need to understand that when you DO get it wrong, it is someone else, someone non-professional but entire invested in the issue, who has to make the course corrections in order to get things back on track.

And we're fine with that. Whether we are parents of those AAC users or the end users themselves, we know that ultimately, it is our problem and our responsibility to get it right. But if someone else is writing the checks and making incorrect decisions because of it, then ultimately their "help" isn't terribly helpful. And when the decision to choose frugality over possibility comes at the beginning of the whole process, when a successful implementation of assistive technology might very well make the difference between a user who will one day live independently and one who will spend a lifetime receiving expensive care from the state? To me, that is the very definition of using limited resources in a very unwise manner.

I'm sorry to go on about this at such length. But I'm not that sorry, to be honest. This is important stuff. It's not just about economics. It simply CAN'T be.

Robert Rummel-Hudson

August 17, 2009

"Family Confidential" interview


Earlier this summer, I did an interview for noted author and educator Annie Fox, for her "Family Confidential" podcast. It was a fun interview, and I've been looking forward to it going live for a while now. It was posted today, for your listening enjoyment.

Podcast for Parents: Advocating for your special needs child

Annie is a fun and very smart interviewer, and I was only moderately mumbly and incoherent. (Update: Okay, I just sat down and listened to it again, and this time, I realized that I WAS sort of mumbly and incoherent much of the time, especially as things got going. Yikes. I could probably use some media training. Anyway...)

My two favorite parts of the interview:

1) I actually cracked myself up a little with this quote, concerning Schuyler and the fact that she seems to share exactly none of my anxiety about the future:
It's like having this little Buddha in the house. "You guys freak out, and whenever you're done, I'd like to watch Spongebob, please. I have no time for your tragedy."

And you know, that hasn't changed. And I suspect when I'm a bitter old man and have all my old man issues, she's still going to be like "Okay, well, call me when you're done and I'll take you to bingo. I have no use for that now."

2) At the end, Schuyler joins in, both on her device and verbally, and it's the best four minutes of the whole thing.

So check it out, and be sure to spend some time on Annie's site. It really is a treasure trove of good information.

August 12, 2009

A Very Very Very Horrible Story


Did not like.
Originally uploaded by Citizen Rob
Okay, so something you need to know about me: I hate spiders.

First of all, I don't like the term "arachnophobia". Wikipedia says this about phobias:

A phobia is an irrational, intense, persistent fear of certain situations, activities, things, or people. The main symptom of this disorder is the excessive, unreasonable desire to avoid the feared subject.

I reject those words "irrational" and "unreasonable". If I were afraid of clouds (Nephophobia) or puppets (Pupaphobia ) or hard-ons (Medorthophobia, I kid you not), then yeah, I'd own up to my issues, but spiders are different. Being afraid of spiders seems like a healthy fear to me. For example, do you know how many species of spider are venomous? It's a trick question. The answer is, ALL OF THEM. They're not all dangerous to humans (supposedly), but they are all venomous. It's one of the defining characteristics of spiders. If you're calling yourself a spider but you aren't venomous? Sorry pal, but you're a crab.

Anyway, Google "spider bite photos" sometime and see how unreasonable my fear is. Spiders are unlike anything else on the planet. They are creepier than bugs, they have four pairs of eyes, and here's a fun fact that you might not have known: they don't have extensor muscles in their limbs. Instead, spiders extend their nasty little legs using, no joke, hydraulic pressure. They are like the most horrible little cyborgs imaginable. If archeologists were to one day discover a tiny little spaceship buried in the rock from millions of years ago, and it turned out to be the craft by which the first spiders came to Earth from some bizarre alien planet, you might be amazed, but you probably wouldn't be skeptical. Honestly, part of you would be saying, 'Well, yeah, that actually makes sense."

Spiders. Man oh man. Okay, moving on.

Late last night, I was outside by the duckpond, enjoying the night air and the big wicked moon rising over the trees. What I was NOT doing, apparently, was watching where I was going, because as I walked through the gazebo next to the pond, I walked right into a gigantic spider web.

If you've ever done this, you know that it is an indescribably terrifying physical sensation. I don't care if you are some sort of weird spider-loving nutbag, there is something primal and awful about feeling that stuff on your face and in your hair and immediately wondering where the angry, venomous monster who built it might be at that moment. There is just no way to be cool at that particular moment, either. I don't care if you're Samuel Jackson. You will do the spazzy panic song-and-dance, and your voice will go up an octave.

Still, I was handling it okay. Until I felt something on my face, scratchy little poking things that I realized were a big spider's crabby, horrible little feet.

That's right, friends. I HAD A SPIDER ON MY FACE.

My reaction was probably what you might expect. I had my phone in my hand, which I apparently tossed into the darkness. I might have been swearing, but honestly I think I was just making incoherent howling noises. I swatted furiously at my face, and I felt it. I hit something that felt like a pebble and saw it hit the sidewalk.

It was one of those big wood spiders, with a fat body the size of a grape. Fangzilla sat for a moment before activating its weird little cyborg hydraulics, extending its nasty little legs and storming around angrily, looking for the giant dumbass who destroyed its home while squealing like a little girl.

I found my phone fairly quickly, despite the fact that I was still punching myself in the head and muttering "GET OFF ME, GET OFF ME!!!" I went inside, cleaned all the web off my head and my glasses, and spent the next hour alternating between the heebie jeebies, the willies, the shivers and the creeps before finally going to bed and embarking on the inevitable dreams where I just keep walking into web after web until the alarm went off.

I don't really have a good ending for this story, but then, that's probably fitting, because for me, this story never ends. For the rest of my life, I get to wake up every morning and say to myself, "Oh, hey, remember that night when I had the giant spider on my face? Yeah, that was pretty fucking horrible..."

August 11, 2009

"Young hipster dad." The reviewer's words, not mine. I'm just saying.


Why hello there.
Originally uploaded by Citizen Rob
Schuyler's Monster received a review on Thimblewicket, the literary blog of Cynthia Shearer, who teaches creative writing at the W.L. Adams Center for Writing and the Department of English at Texas Christian University in Fort Worth. She's the author two novels, The Wonder Book of the Air (Pantheon/Vintage 1996), which won the 1996 prize for fiction from the Mississippi Institute of Arts and Letters, and The Celestial Jukebox (Shoemaker & Hoard/Avalon 2005). Her work has appeared in a number of publications and anthologies, and she was the recipient of a fiction fellowship from the National Endowment for the Arts in 2000.

So yeah. I was nervous about this review going into it.

Well, I'm pleased to report that the review was a good one, maybe one of the most positive I've received yet. Perhaps more important than the fact that she liked the book, however (and you won't hear me say that very often), was the fact that she clearly read it very carefully, and she understood what I was trying to do. Also, I can't lie to you, it was really nice to read a review that discussed my merits as a writer, rather than as a dad who writes. That might seem like a slight distinction to you, and perhaps it is when my own weird hybrid of insecurity and narcissism are taken out of the equation. It was still heartening, particularly after my recent crisis of writerly confidence.

And she referred to me as "a young hipster dad". Really, she could have trashed the book and I would have still enjoyed that part.

Schuyler's Monster should be shelved, and sold, and taught in universities, as literary memoir. Anyone wondering what it takes to be a writer should read this book. It tells the story of a remarkable child, yes indeed. But let the record show also that it is the dogged, if a little delayed, debut of a born writer with plenty of truth-telling ahead of him. What interrupts you also creates you.

Also read the interview I gave, Escape from Jimbobwe: Interview with Rob Rummel-Hudson. (There's more to the interview, about education, that will run at some point in the future.) I think I managed to avoid offering up too much incriminating dumbassery. So I've got that going for me. Which is nice.

August 8, 2009

Manifesto


Pirate scruff
Originally uploaded by Citizen Rob
A know there are writers out there who look for their topic and then sit down and just write about it. I'd love that. For the past few months, I've been trying to be one of those writers. I've been trying to work on a new project, one that has nothing to do with disability or parenting or the stories and faces of broken children and their broken families that haunt me when I close my eyes. Writing about them was beginning to wear down at me, leaving me feeling emotionally exhausted. I began work on a book about music, one that I'd been thinking about for a long time and which sounded like a lot of fun to me. My agent thought this new book topic was a winner, and so I was ready to be done with monsters for a while.

But that's the thing. I never stopped to ask if monsters were done with me.

Back in June, we attended a conference for children with a variety of related neurological developmental disorders, including Schuyler's own, polymicrogyria. The whole thing was very touch and go for a while, with funding being sort of up in the air until sponsorship was secured. By the time we arrived, I wasn't thinking of much more than the logistics of the trip and the presentation I was going to give, on implementation of AAC from a parent's perspective. I was in a very professional mode, and feeling a little detached from the people I was going to be speaking to.

All that changed, dramatically, as soon as we arrived and I began to meet people. My people.

I've already written about this before, about how I suddenly felt like I was part of a larger community, a family, even. But in the weeks since the conference, I've thought a great deal about the experience. More than that, I've felt about it. It's been a complicated thing to process, and I'm just now beginning to get a handle on it.

My presentation at the conference focused on Schuyler's experience with AAC technology, her Big Box of Words and now Pinkessa. I spoke at length about her achievements at her school here in Plano, successes that should eventually lead to her graduating from high school, a goal that was once considered unattainable but has now become just part of the plan. I spoke about hope, and about believing in kids like Schuyler and the things they can achieve for themselves if only given the opportunity.

But I only realized later that my pride in Schuyler had perhaps allowed me to miss something. Schuyler was among the highest functioning kids at the conference. For most of the parents at the conference, finding a way to help their child communicate would be a problem that they'd love to worry about. For many of them, their first priority was to save their child from the seizures that were tearing their lives apart. They were there to find a way to keep their kids alive.

At the final presentation of the day, the geneticists and doctors who had examined most of the kids at the conference spoke to a packed hall, the same room in which I'd spoken earlier. They mostly spoke about the current status of their genetic research, and about the seizures that plagued most of these families. One parent raised his hand and asked the Hard Question, the "be careful what you ask because you might not like the answer" question. He asked about life expectancy.

I'm not sure exactly how I feel about how the doctor replied, but the question had been put out there and so perhaps a straightforward answer was appropriate. The doctor put together a hypothetical patient with a number of specific conditions that roughly matched most of the kids at the conference. And then he said it. He just opened his mouth and said it. "Statistically, that patient could expect a lifespan of approximately eight years. If they receive home care rather than full-time clinical care, that number goes up to about ten years."

I looked at a father who was standing beside me at the back of the room, a giant of a man whom I'd met earlier. His expression was calm, but the color had drained from his face. He glanced over at me and quietly said, "That's my daughter he just described."

It occurred to me then that when Schuyler graduates from high school, a goal I'd proclaimed with pride and perhaps some insensitivity, a great many of these kids would be gone. Just gone.

In the weeks since then, I've tried to make sense of that experience. I can't seem to let go of the memories of these families, of the parents who never appeared to crack, even when their kids' needs threatened to overwhelm them. These parents weren't emotionally detached; indeed, I would challenge the parent of any typical child in the world to demonstrate the same kind of unflinching, unconditional love that these mothers and fathers showed at every turn, whether that meant making their kids laugh through tears or carefully dividing their attention with neurotypical siblings or fighting with feeding tubes or just holding their kids tightly while they suffered through yet another seizure. These weren't stoic parents, but they were unflappable. They weren't heroes, but at the same time they were, you know? Whenever it was that they found time to lose their composure, it wasn't out in the world, and it certainly wasn't when their efforts were needed.

And almost without exception, when I spoke with these remarkable parents, they expressed their appreciation and their admiration for me, for ME, for sitting down and writing a book. I wrote a book about raising a little girl whose monster squeaked compared to the ones their kids battled. I told a story with a level of "tragedy" any of of them would love to have in their own lives, and one with an ending happier than they were being told to reasonably expect for their own families. And they thanked me for it, often tearfully, because I was giving Schuyler a voice, and so in some way, perhaps I was giving them a voice, too.

I can't stop writing about this, not yet. I can see that now. I can't walk away from this. I'm not the greatest writer in the world, and I'm not the only one who can stand up and talk about this place, this terrible and wonderful world of afflicted children and their families. I certainly haven't paid the same price of admission to be here, with my healthy daughter and her uncertain but non-lethal future.

But I've scratched out a platform, and I've gotten a small portion of the world to listen to what I have to say. And as I look back on the experiences I've had and the things I've written about over the past few years, since the book came out, I know that I have more to say. I have something to contribute, even if it turns out to be some rambling, unreadable Manifesto of the Broken that no one will ever want to publish. Which it may very well be.

I can see it now, with clarity. It's not about being published, or being able to call myself an author without air quotes or a "no, really!" It's not about book signings or Good Housekeeping articles or Amazon rankings or a fucking Wikipedia entry. It turns out that Schuyler's Monster was never about any of those things.

It might have simply been the first step.

August 5, 2009

Meditations In An Emergency

Now I am quietly waiting for
the catastrophe of my personality
to seem beautiful again,
and interesting, and modern.

The country is grey and
brown and white in trees,
snows and skies of laughter
always diminishing, less funny
not just darker, not just grey.

It may be the coldest day of
the year, what does he think of
that? I mean, what do I? And if I do,
perhaps I am myself again.

~ Frank O’Hara

July 20, 2009

Pause


This is Serious Rob.
Originally uploaded by Citizen Rob
I've been somewhat absent from most of the online world for a short time now, and I guess I ought to post something about that. Not a word of explanation so much, because I'm not sure I can explain it this time more than any other. Really, I guess what I'm asking for is a bit of your indulgence.

For some reasons which are external but others no doubt on account of a familiar, tiny but reckless monster of my own, I am finding myself in kind of a dark place. If you've read my book or even this blog (or its online journal forefathers), you know that it's not the first time. You also know that I'll work my way through it, and take care of my personal and professional responsibilities as I do so. I've negotiated these waters before, through much worse storms.

I'm not much of a fan of those weeping, self-indulgent, never-ending depression posts on some blogs, and I know how very little you'd enjoy reading that sort of thing here. So I'll simply say that if I seem scarce for a few days, I hope you'll keep the faith a bit longer and be here when I come back. Because I always come back, and I do so renewed. And often with an amusing beard to show for it.

Thank you. I love you all, and shame on me for not telling you that more often.