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.

July 8, 2009

Trust


Trainspotting
Originally uploaded by Citizen Rob
Yes, I've been pretty invisible lately, sorry. Part of my absence has been a result of living inside my head lately and not really engaging with the world much. But mostly I've been quiet because, well, things have been quiet. Schuyler's out of summer school and in full-blown summer hobo mode, which she has certainly earned. I'm looking at writing projects, some of them new ideas and some of them things I've been kicking around in my head, but none of them ready for public discourse just yet. Given how fascinating it can be to endure the magical experience of writers writing about writing, that's probably just as well for all of you.

Summers are always a bit of a mixed bag for Schuyler. On one hand, she's built for summer. She could actually jump in the swimming pool first thing in the morning and spend the entire day in the water, and she would still offer petulant resistance if we told her it was time to go in at midnight. She doesn't burn, but instead turns a summer brown that is an alien concept to me, with my frighteningly white Gollum skin. She stays up too late, often watching inappropriate tv with me, and she sleeps late the next morning. She's a little girl in the summertime, and if she sometimes passes for neurotypical at school, during the summer she moves through that world with even less effort, like a Martian spy living undetected in our midst.

I exist in a constantly shifting state of trust and then suspicion where Schuyler is concerned. That's certainly nothing new. Last week, two days before Schuyler's summer program ended, I was sitting at my computer in the living room doing something unproductive and waiting for Schuyler's bus to bring her home. The bus was scheduled to arrive at 1:10 and had been consistently getting there at that time or maybe a few minutes earlier, aside from a few times it was late. The procedure was the same every day, as it needed to be. The bus arrived, I went outside and greeted Schuyler, the bus left. The driver released Schuyler to me. This is also the standard procedure, by the way, and not just for special needs kids. If you are willing to allow your kid to just be dropped off and left to their own devices, you have to sign a form stating such.

So you can imagine my surprise at 12:45 when I heard the front door open behind me. I assumed it was Julie coming home for lunch until I heard, "Hi Daddy!"

I think my face did that Japanese anime bugeye thing, accompanied no doubt by a loud "BOING!" sound, and I turned to see Schuyler walking in as if this was an everyday occurrence. I got up and went to the door in time to see the bus driving off. To be fair, it is entirely possible that the driver waited to make sure she actually got in the door, but I have no way of knowing either way.

It wasn't a tragedy. I was there, the door was unlocked, and it all worked out just fine. But what if I'd gotten caught in traffic and didn't happen to be home 25 minutes early? Schuyler doesn't have a key and doesn't have the dexterity or the hand strength to work the lock even if she did. Would she have sat outside the apartment in the 100+ degree Dallas heat? Would some kind neighbor have taken her in, no doubt calling the police or child protective services to come take her away? Or perhaps someone not so kindly would have taken her off our hands for us. Like any apartment complex even in the best of neighborhoods, we have a few lurking Boo Radleys wandering the parking lots.

It's something of an academic point since my paranoia guarantees that I would never be away from home in the hours before the bus dropped her off. But still. I sent an email to the school transportation director and got a phone call pretty quickly, and to his credit, he recognized how serious the mistake was and offered no excuses, only apologies. But it brought home to me just how much trust we as parents are expected to hand over to others in the course of our children's lives.

I recently read a cheerful little something on the New York Times Motherlode blog about parents and death. (I believe the discussion was sparked by the unknown fate of Michael Jackson's kids, because there is clearly no discussion being had anywhere in America that is not in some way about Michael Jackson.) It made me think about the discussions that we've had about what we would want to happen to Schuyler if the icy hand of mortality were to grab us both up at once. We have family members we trust, of course, but none of them live in places where the schools would be even adequate for her needs. We've even considered asking one of her teachers here in Plano to become her legal guardian in such an event so she could continue to go to school here. But how do you even have that conversation?

For now, we'll keep taking separate cars.

June 30, 2009

Guest Blogging: Marketing Tips For Authors


Squirrel monkey
Originally uploaded by floridapfe
For those of you who are writers, particularly of nonfiction, I wrote a little somethin' somethin' for Tony Eldridge's Marketing Tips For Authors.

I wrote specifically about developing a platform, which for nonfiction writers can be sort of a twitchy concept. "To even be considered for publication, you must have a great platform!", we're told, and yet it seems to be one of those terms that means whatever a particular agent or editor or publisher thinks it means.

Well, now you can add my particular take on the matter. That ought to keep everyone nice and confused. My work is done.

June 24, 2009

It's time for my stories

Schuyler is taking a summer school class, one that deals specifically with reading. Yesterday she brought home a little story book she'd been assigned, and she excitedly read the first story to me. I was so pleased with how well she did that I set up the camera and had her go through it again.

This will give you another opportunity to observe her verbal speech, along with the actual words that she's reading for comparison. Mostly, though, I just wanted to let her show off a little. Reading is a hard skill for nonverbal kids to learn, and I think she's kicking it old skool.

By the way, the story kind of sucks. (SPOILER ALERT) Hamsters are just about the slowest, laziest animals on earth shy of a sloth, and even sloths can climb trees. Well, what are you gonna do?

I have a face made for radio


Originally uploaded by Citizen Rob
If you're in the Dallas area, or if you like to listen to streaming programming on the web (and really, who doesn't), you can catch me on the radio this afternoon at 2:00pm central on the North Texas Kids Radio Show with Dr. Minette Riordan.

You might be tempted to think it's the End Times just hearing the words come out of my mouth, but I will be on The Word, KWRD-FM 100.7 Christian Talk Radio. Weirder things have happened.

Anyway, I think the interview went really well, and I don't think I said anything that will upset any tenderhearts out there in Radioland. If you don't happen to be listening on the radio, I'll post a link to the podcast afterwards.

So there you go.

-----

UPDATE: Here's the podcast:

June 23, 2009

California

I thought about doing a detailed wrap-up of the 2nd Annual Microcephaly Convention, which we attended over the weekend and where I presented a speech, but I think my previous post probably expressed how we felt pretty well. It really did feel like we were attending what was going to be, unbeknownst to us, a family reunion. It was a life-changing experience.

Outside of the conference, we had a good time as well, aside from my issues with our rental car at the very beginning of the trip. Now, in my own defense, the car rental lot was in a dark spot underground. Furthermore, the attendant simply led us to the car, a Nissan Altima, and aside from opening the trunk before I got there (another crucial point in my defense, since I couldn't see what was printed in large letters on the back), she didn't say a word about any special properties the car might have. And I'd never actually driven a keyless car before, but the instructions said plainly that in order to start the car, one should simply press the ignition button. Also, Julie was not one bit of help, at all.

Having presented all my weak arguments, however, it is still embarrassing to the point of tragedy how long we sat in this car, repeatedly pushing the button to seemingly turn on the dash lights and then turn them off again, hitting the gas but hearing nothing from the engine, before some random synaptic event occurred inside my brain that instructed me to put the car in drive so that we could drive away in our soundless Hybrid rental car.

Anyway, here are some photos from the weekend.




Schuyler and I signing books, which were purchased and then given out by the Prentke Romich Company, makers of the Big Box of Words and Pinkessa, and our very generous sponsors for this appearance.

Serious speech face


With Jenniffer Lewis, Founder, President and CEO of the Foundation for Children with Microcephaly. Schuyler loved Jenni immediately and with a tackle-hugging intensity that bordered on person injury. To her credit, Jenni loved her right back and was gracious and warm to our family, not once mentioning "Schuyler" and "restraining order" in the same sentence. Our daughter really can be a little stalker when she falls for someone.


Schuyler and Dr. William Dobyns, from the University of Chicago Department of Human Genetics. If you've read my book, you know that he is like the Wizard of Oz for parents of kids with genetic brain disorders; the importance and generosity of his presence at this conference can't be overstated. He commented on how well Schuyler's natural speech has progressed, which made me happy.

He was friendly enough to me and didn't mention the book, aside from a comment about how he's got PMG parents who now want speech devices for their kids that they can't afford and that the schools and insurance carriers won't pay for. Fair enough. I know my book has made things more complicated for doctors and teachers and school administrators. I'm not sorry about that, exactly, but I get it.


Demonstrating Pinkessa to author Vicki Forman and her daughter, Josie. Vicki's incredible book, This Lovely Life, is hitting bookstores soon and is already available for order. I am not exaggerating one bit when I say that it is the most astonishing and emotionally affecting book I've read in years, maybe ever. I'll have more to say about it soon, but you need to go buy it now. I mean it. I'll wait.


Schuyler and Josie, drawing together. Shortly after this, they ran into the ocean fully clothed and bodysurfed together. I'm not even kidding.


Schuyler apparently had some ideas about how Vicki should wear her hair.


Monique and Julie at the beach.


Probably self-explanatory.


Arriving back in Dallas with Jasper. He always brings her home.

June 19, 2009

prosapia monstrum

We are at the 2nd Annual Microcephaly Convention, and it's late. I really should be going to bed. California is two hours earlier than Texas, and it's been a long day. But I needed to say this now, while I'm still in the middle of it.

Tonight, Julie, Schuyler and I sat at a table with two other families, both of whom I feel like have become, in a short evening's time, part of our family, too. But in a very real way, they already were.

Because each of those families have a child with polymicrogyria, just like Schuyler.

They are the first kids with PMG besides Schuyler whom we have ever met. And they weren't the only ones here, not even close.

It's barely even begun, and yet we've already met amazing people at this conference, including Jenniffer Lewis, the remarkable young woman who first established the Foundation for Children with Microcephaly (which is now opening up to families with other related neurological disorders, like polymicrogyria & lissencephaly) and then put together this gathering, now in its second year. She did so because when she received a diagnosis for her child and then went to find some kind of support, there was nothing. She felt alone, and because she refused to accept that feeling, now none of these families have to feel that way.

I give my presentation tomorrow and again on Saturday, and suddenly I'm afraid that I won't be able to keep myself together all the way through.

But I'm not that afraid, because I also don't think it'll matter much if I don't.

Schuyler was never alone, of course. But tonight, that's more true than ever.

June 16, 2009

Calling Mister Furious

My apologies for the length of this post. Sometimes it's good to get things on the record.

So Julie received a call this morning from a "legal mediation" company with a Very Serious Legal Issue to discuss with her. The person leaving the message on voicemail said "I don't even think you're aware of what's going on!" So, you know, very scary, and before breakfast, even.

(UPDATE: Apparently they called Julie's parents this morning, too.)

She called the number and got a high strung, angry gentleman at "the Office of the CRA". She was informed that she has an old credit card outstanding debt of over $9000, and unless she gave him her bank information RIGHT THAT INSTANT, the matter was going to go to court and the debt would be reported to the IRS as additional income, and no, we won't send you anything in print, and no, you can't have a moment, you need to give us that information right now now nownownownow!

Julie, not suffering from a head injury, declined to give Mister Furious our bank account numbers, thereby denying the Office of the CRA a sum so vast that they might actually be able to invest in not one but two tacos from Taco Bell. (But sorry, no beverage.) She did, however, keep talking, or rather she tried, but mostly she just listened to this guy with his unresolved anger issues. A few interesting points came out of his frothy rage, however:
  • The credit card on which she had supposedly defaulted on $9000 in debt was one that was closed out a very very long time ago. Years ago, in fact, and the debt had been settled. More importantly, and this will perhaps not surprise you, the limit on that card was nowhere close to $9000. It might have been a thousand. Because, you know, credit card companies may not be smart, but none of them are dumb enough to give the Fabulous Rummel-Hudsons a $9000 line of credit. Certainly not way back then, during our wilder, dumber days.
  • The contact address they had was that of Julie's childhood home, where her parents still live. It may have been listed at one time as a reference address, but it hasn't been listed as her home address since back when she was receiving lunch money.
  • He repeatedly called her "Julie Hudson", which has in fact never been a legal name of hers. You can try a bunch of different combinations, but that's actually the only one that won't work.
  • The most interesting piece of information came when Mister Furious heard me talking to Julie (probably suggesting creative and possibly physically challenging anatomical activities she should suggest to her caller), he said, "You can listen to me, or you can listen to your boyfriend there..."
That's right. Despite their claim to have her comprehensive credit and personal history in the file open before them, the Office of the CRA didn't know that Julie was married. In fact, it appeared that all the information they had on her was pieced together randomly and in most cases wildly inaccurately.

After Mister Furious hung up on Julie, I called them back to try to find out who they were and where they were calling from. I got Mister Furious again, except now he was using a different name. He refused to give any information and said he could only talk to Julie, not me. When I handed the phone to her, she was told that if we called them back again, it would be considered harassment. (Really? Because on this saved voicemail message, it really did sound like you were rather insistent that we call you.)

So there you go.

Here's the thing about this. I think this company is operating under an outdated business model. I suspect they're not entirely unaware of the issues at play since they demand payment information right then, during the call. Because if you have time to go online and start Googling their information, particularly the phone numbers from which they called and which they asked for a return call, you might find some interesting tidbits of information, both from other consumers and from legal websites.

So in order to help "the Office of the CRA" improve their procedures and have more success in scaring the crap out of unsuspecting marks, here's just a sample of what turns up in about two minutes of Googling.




Google: 866-553-0428

CRA Collection Company, Inc.
1150 Lancaster Boulevard
Mechanicsburg, PA
(866) 553-0428

"does anyone know who this company is?? they somehow got my sister's number and is asking for me, claiming to be a law firm."

"who is this company? they are looking for someone who is not at my number and had even called my son in OK looking for this person. They say how important it is and that it is a very serious matter which needs immediate attention. Does anyone know who this is?"

"Paul from CRA called looking for me under a name I have not used in years. I have been divorced, remarried, and 3 kids since using this name. My oldest is in high school now. I live in a new state and number is unlisted. This is just crazy."

"I got a call from this number at my moms house. I have not lived at home for over 16 years. A Ms. Thompson is the caller and she tries to be very intimidating and almost a bully, but she will not give any specific details. My mom is ready to turn it in to the authorities."

"I just got a message from a Mrs. Karis at 866-553-0428. She left a message saying that she was looking for "RO" (married name) from "the city I grew up in." Which was strange because I haven't lived there in over 10 years. And I wasn't married when I lived there. I just felt it was very strange since any account I have with my married name I know is up to date. Do you just ignore this type of call? Or should I call back and find out what's going on? I would hate to think that they will be after my family members next."




Google: 831-274-2477

"A lady called wanted me to relay a message to someone that's supposedly left our phone number as a contact. She just gave a six-digit case no. When I asked for what matter is it related to, the lady started yelling and became extremely rude and said it's none of my business. Caller ID showed the call was from 831-274-2477. She wanted the person to call back at 1-877-407-9274 with just a case no. What a rude scammer!"

"I just received a call (on the cellphone I use for the company that I work for). I do not know how "Kristin" got my phone #. She says she is with CRA company. She was rude and obnoxious and said that she had an urgent call for me, though I never identified myself. She also threatened that she would report me for not identifying myself or my company name. I don't have any debts that need collection, so I don't know why anyone would be phoning me- especially on my company cellphone."




Google: 877-407-9274

"This has never happened to us! I'm glad I wasn't being too gullible tonight! They call from the same phone number 1-866-460-4260. The guy said he name was John Shelton. The guy said that he needed to speak to my husband urgently concerning a legal matter. My husband called back and spoke with a female (sounded white). We had to ask for a company name = CRA. They were unable to tell us what that stood for. They were very on edge, argumentative, and sounded threatening at times...claiming they would turn us into the IRS, if we didn't settle this now. They said that this was a last attempt to collect on a credit card debt before legal action would be taken. They stated that this was on his credit report and needed to be taken care of now. They said they only take credit/debit payment (Go figure). The card/debt they were referring to has been taken care of and the card has been canceled for many yrs, and we know for a fact that it is not on the credit report. My husband hung up on the woman, and she called right back from a different #. She said, "Mr. XXXXX, I can't help you with this, if you keep hanging up. What other legit company would ever do that. She was asking for his SS# and all kinds of stuff! I just want to turn these low life losers in, so they can get caught! It's a shame!"

"Calling all of my daughter's relatives, threatens to serve paper's, she is going to be arrested, calling her elderly grandparents, parents, says it is on excessive debt on a non existant credit card debt of a limit that she was never approved for. The woman "FLIPPED" out, was YELLING, CALLED my daughter CRAZY, would not confirm any information. "

"CRA woman became agitated when i asked for her address, refused, said she'd only been calling for a month, that they were not a collection agency but a 'mediation service.' supervisor Stephanie Martin came on line, said they'd never called me before today, i'd be taken off list. i said i'd been trying to stop calls for a year and a half. also refused address then hung up."

"Harrassment
"866-452-9518 called my neighbor advising her that I gave them permission to contact them to get info about me. My neighbor knew better than this and told them she has nothing to tell them. They then proceeded to advise her that they are going to press charges if I do not call them back. I called them to tell them to NOT call looking for me ever again & I Never gave them authority to call my neighbor advising them that I said they could. The guy started yelling at me sayibg he wouldn't have to call if I paid his client monies owed. I asked what client? What monies? He refused to answer and continued yelling. I hung up the phone. I will be reporting them to FTC as well."


"These people called my Uncle\'s ex- wife from 1988 and initially stated that they wanted to deliver a package and needed to verify the address. That did not work so the called again and stated that they were calling from the office of CRA and some investigators needed to speak with him immediately. I called them back multiple times and they hung up on me whenever I asked what CRA stands for and what type of company were they. Finally they advised me that they were the Consumer Recovery Associates."

"These people caled me 8 months ago, had the wrong first name, middle initial and SS#, told me it was a mistake. They have since reported nick name, alternate SS# to the credit bureau and are now harrasing me again. I think these people are scum. They also stated I made the last payment from an address I had 9 years ago just 6 years ago so it is within the statute of limitations, what idiots! I complained to the FTC and the VA Attorney General! I hope the hard inquiry comes off my credit report and they leave me alone for good. This account is apparently outside the SOL anyway."

Here's a big one:

"If you receive a call from this number, you have been called by junk debt / collection agency that buys debt from original creditors that has been written off or settled and is beyond the statute of limitations in most states. They are trying get the money for themselves, not the original creditor.

They are reportedly a serial violator of the Fair Debt Collection Practices Act (FDCPA). They may be illegally using credit information obtained from Experian or other credit reporting agencies.

This company has been known to contact and harass people they believe may know the person they are trying to reach including distant relatives, ex-spouses and possible former co-workers.

NEVER answer these calls if you see this as a caller ID. NEVER return these calls. NEVER give them ANY information about the person they are seeking or refer them to others.

Any "positive" comments you read in these notes about the company may have been written by employees of the company.

The company is:

Consumer Recovery Associates
2697 International Parkway #4
Suite 270
PO Box 2916
Virginia Beach, VA 23450-2916

The following is the most comprehensive information gathered about this company from various sources on the Internet.

***If you've been called by a number not on this list or by someone using a different name, please copy this list, add the number/name in the correct order and repost it in its entirety.

Company Names that CRA reportedly uses:

CIA and Associates
CC Associates
Consumer Credit Association
Consumer Recovery Associates
Court Company
CR Associates
CRA Associates
C&R Associates
C & R Associates
Farm CIA & Associates
J Lamb and Associates
and possibly GC Services

Phone numbers that CRA reportedly uses:

(list redacted because it is crazy long.)

Individual names that CRA reportedly uses:
(also redacted for length, but the woman who left the voicemail, Mister Furious and his Furious Twin are all on the list)"




And finally...

Pennsylvania Consumers Challenge CRA Security Systems' Collection Practices

Bradley v CRA Security Systems, Inc.
CASE ID: 3131 | CREDIT / DEBT | 02/06/2004

A statewide class action has been filed in Pennsylvania against CRA Security Systems, Inc. and their parent company, Capital Recovery Associates, Inc. The action is brought on behalf of all Pennsylvania residents who received a form type collection letter demanding immediate payment of the consumers' alleged debt. The action is brought under the federal Fair Debt Collection Practices Act and seeks statutory damages as well as injunctive and declaratory relief.
According to consumers, CRA used language in its initial collection letters that was confusing and deceptive. Federal law requires that all collection services include a notice in their initial collection letters that informs consumers of their right to investigate the validity of a debt within 30 days. Although CRA's letter contained this notice, consumers allege that other language in the letter overshadowed the notice and rendered it ineffective. Specifically, the letters requested immediate attention by remitting payment. Consumers allege that by demanding immediate attention and payment, they were unable to determine if they were given 30 days to investigate the validity of the debt, or if they were required to pay immediately. Additionally, the letters were allegedly "signed" by Richard Lyons. According to consumers, there is no viable evidence to suggest that a Richard Lyons reviewed their debt or that Richard Lyons is even employed by CRA. However, consumers claim this "signature" is meant to convey to them that the debt had been reviewed by an actual person. According to consumers, CRA also routinely charges allegedly illegal fees for returned checks. Finally, even after repeated attempts to dispute the validity of the debts, many consumers claim that CRA never provided them with validation.

Under the Fair Debt Collection Practices Act, any unfair, misleading or intimidating language is forbidden in collection letters or other forms of communication. The consumers allege that the language used by CRA fulfills this standard. They claim that CRA's language overshadows and renders ineffective the 30 day notice of disputing the validity of the debt. They claim that CRA's use of a signature that is allegedly bogus conveys a false and misleading impression that an actual person has reviewed their account, when in fact the letters are "form" type and mass mailed. Finally, consumers claim that CRA typically ignores all attempts to dispute the validity of the debt and continues with coercive efforts designed to elicit immediate payment. According to consumers the potential class is quite numerous, numbering in the thousands, and perhaps tens of thousands.





So there you go! Best of luck, Office of the CRA. Also, we filed reports with the Attorneys General of Texas, Virginia and Pennsylvania. You really should check out this Internet thing. I didn't even have to put my pants on!

June 13, 2009

Stephanie's Day in Dallas

If you're there today, keep your eyes open, we might just be around...

www.stephaniesday.com

Stephanie's Day, "A FREE Resource Fair for children with special needs and their families/caregivers" at NorthPark Center, Saturday, June 13, 2009 from 10am-2:00pm. Stephanie's Day was founded by CBS 11/TXA 21 President and General Manager, Steve Mauldin, in honor of his daughter Stephanie who has autism.

Kids can enjoy music, games, entertaining activities, and much more at Stephanie’s Day. Meanwhile, parents and caregivers can find a wealth of resources available through local non-profit organizations, therapy centers, advocacy groups and parent-to-parent networks.

This is a FREE EVENT located at NorthPark Center in Dallas, Texas.

NorthPark Center
8687 N. Central Expressway
Dallas, Texas 75225
-----

Update (and postmortem)

If I had one criticism of the event, it would be that the organizers need to decide if they are interested in holding a general special needs event or one that focuses exclusively on autism. I think either one would be great; I certainly don't begrudge anyone in the autism community the attention such an event would attract, particularly in the present media environment where autism continues to receive so much focus. The rising tide lifts all the boats, as they say. I suspect every kid with a disability benefits from that kind of attention. not just the ones with autism.

But aside from a handful of specific providers (CP and fragile X, for example), the focus of the event was definitely on autism, which shouldn't be a surprise considering how it began. But I do think they ought to consider either working hard to expand their scope to include a much wider range of disabilities or making this about autism outright.

That's my sincere opinion that exactly no one asked for.

Not surprisingly, Schuyler managed to sneak into the tv coverage for a second or two...

June 12, 2009

On the radio

Julie shot some video while I was being interviewed on a local Christian radio show. Just for fun.

June 10, 2009

The truth, in a whisper

In answering a comment on my last blog post, I found myself admitting something, out loud, that I haven't let myself say for about six years. I didn't even realize how long it had been, or that I was about to say it in that moment, until the words appeared on my screen.
"...Despite the mountain of evidence and opinion against the idea, I honestly believe that one day, she will be able to talk. Perhaps not as clearly as the rest of us, but I don't think this is as good as she'll get, not by a long shot."
It's funny what the heart holds onto and whispers quickly and quietly while the brain's not paying attention. It's funny where the agnostic can still find faith.

June 9, 2009

Storyteller

Today, as we drove home from work, where Schuyler spent the afternoon with me, I asked her what she wanted to listen to on my iPod. She loves the music from Coraline and asked for that, and as the music played, she began telling me the story of the movie. She didn't use her device; her thoughts were coming fast and furious, and so for the next few minutes, I was treated to her retelling of the story, with wild gestures and lots of pantomime, and very little intelligible speech.

When we got home, I asked her to tell me the story again for the camera, and she gave me a much-shortened version.

In the past, I've posted video of Schuyler in which a lot of you said "Oh, I can understand her just fine!" The reality of Schuyler's speech, however, is that removed from predictable context, it becomes much more challenging. I will say that in this video, I can understand more than I can't, and I'm sure Julie would be able to as well. But this will give you a more accurate picture of how she speaks.

And how much fun she is, too.

June 5, 2009

Different


Schuyler loves Swee
Originally uploaded by Citizen Rob
Today is Schuyler's last day of third grade, and barring any last-minute drama (and why would I ever assume there wouldn't be any of that?), she will have made it through her last week without incident. She's not out of the woods yet, exactly; she starts with her summer school program next week for some additional reading help, but that's only for a few weeks, on another campus with a whole new group of kids. But it will be different, and sometimes with Schuyler, different is good. Sometimes.

I'm not going to lie. In some ways, it's been a rough year for Schuyler. She held her own academically in school and even managed to pass the reading portion of the TAKS test, but there have been some social pieces that have been hard to manage, and they are the ones about which I've harbored future anxiety for some time. Put simply, Schuyler is attempting to integrate herself into the social structure of neurotypical kids her age, and it's hard. She's been running into obstacles that I don't believe she understands.

I don't think it's happening very much yet; most of her classmates still treat her incredibly well, and they remain fascinated with her. (Not one but two older students asked permission to write their final class reports on her.) But when I pick her up from school, many times she'll point someone out and tell me that they are her friend, but when she tries to say goodbye to them, they will turn away from her deliberately. Schuyler doesn't take the cues and will sit there and repeat her goodbyes to them over and over. Sometimes they will turn and give her the tiniest possible little wave, as if they are embarrassed that the weird kid is calling them out. Mostly they will pointedly ignore her, even if one of the staff says something to them.

I understand. I remember that age, and I remember the social death that could come from associating with someone who your friends didn't care for. I was both the outcast and (now to my shame) the ostracizer at different points of my youth, and I remember how brutal it could be, on either side of the line. And I know that it will only get worse as time goes on.

This has happened before, of course. Schuyler's relationships with neurotypical kids have always been dicey. Even back in Austin, she had one little friend about a year younger than her who treated her pretty shabbily. She would boss Schuyler around, bullying her and lying about her. Not completely grasping the nature of Schuyler's disability, she would sometimes try to get her in trouble by telling her parents and us that Schuyler had said some mean thing or another. (That would be a very impressive trick, especially back then before the Big Box of Words.) One time, in frustration at Schuyler's refusal to be bossed around, this girl bit her.

Schuyler was a much different kid back then, before she began working with her speech device. She was still the ethereal, otherworldly little girl that I talk about in my book. So strange and beautiful, but not entirely ours or entirely in our world, largely lost to us. It was easy for other kids to treat her differently back then, easy to see her not as another kid but as something exotic, like a pet.

Four years later, Schuyler is a changed girl, almost unrecognizable from the one in the book. Despite her disability and her delayed development, Schuyler can pass very easily for a neurotypical nine-year-old now. AAC has given her so much, but it has been this most of all that I think has been the most remarkable to watch.

Schuyler exists in some ways in a strange grey area between special education and mainstream school. She is completely ambulatory, suffers none of the social or tactile anxieties of many autistic children and is unafraid of change or of operating within that neurotypical world. In her special education class, Schuyler doesn't seem to always grasp those differences. She keeps tweaking her little nemesis in her AAC class, for example, largely because she doesn't quite understand this girl's social anxieties which she does not share.

And yet, Schuyler is not capable of existing unassisted in the neurotypical world, and yet she doesn't entirely belong there. Not quite, not yet. Which is fine from a classroom perspective, since she has an aide and her BBoW to bridge much of that gap. But socially, she doesn't accept that there is any reason in the world why her neurotypical classmates wouldn't want her inside their social circles, which are alarmingly well-established even in third grade. It's hard to explain to her that while there probably aren't any good reasons, there are plenty of bad ones and she's going to get a chance to experience them all.

One thing hasn't changed since Schuyler was a remote, odd little girl with a bullying friend back in Austin. While she will stick up for herself and her friends when she feels like they are being mistreated, Schuyler will accept a shocking amount of unkind treatment from someone whom she identifies as her friend. And as a father, that is just as hard to watch today as it was four or five years ago. She's beginning to understand it now, which is probably for the best but nevertheless breaks my heart right in two. A few weeks ago, she got in trouble for hitting one of her neurotypical classmates on the playground. When asked why she did it, her explanation was that the girl wouldn't play with her. Where once she was puzzled, now she's becoming frustrated, even angry.

Schuyler's not blameless. She is in fact far from it, and I recognize that. But the older she gets, the harder it will be to explain why some kids treat her so differently and badly. In some ways, these are issues that are universal for every little kid in every school in the world. But like all things Schuyler, it's the differences that are hard to bear.

June 3, 2009

SoCal with the RumHuds


The fam
Originally uploaded by Citizen Rob
A courtesy note for stalkers...

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Southern California Meet-up with the Rummel-Hudsons

Robert, Julie and Schuyler will be in Costa Mesa, California for the 2nd Annual Microcephaly Convention, June 18-21, 2009. If you aren't attending the conference but would like to meet the Rummel-Hudsons, join us on Thursday afternoon or Sunday morning for a little informal get-together.

June 18, 2009 | 12:30pm
The Beach Pit BBQ
1676 Tustin Avenue
Costa Mesa, CA 92627

June 21, 2009 | 10:00am
West LA Farmers Market in Santa Monica
11360 Santa Monica Blvd
West Los Angeles, CA 90025

RSVP to info@schuylersmonster.com

June 1, 2009

Sponsored Silence and the Big Box of Words



This video was put together by the Ohio Speech-Language-Hearing Association and the Cincinnati Children's Hospital Medical Center to promote awareness of augmentative communication. The 2008 Sponsored Silence Event was made possible in part by support from Cincinnati Children's, and by DynaVox and the Prentke Romich Company, the two industry leaders in AAC speech technology.

On a personal note, I really hope you'll set aside ten minutes of your day and watch this. I've seen a lot of presentations like this, but for some reason this one reached me in a deeper place. Which is my way of saying that I sat here like a weepy little girl when I watched this. I don't know, maybe I have Issues.

In the next few weeks, I'm planning on putting together a video project similar to what Nancy Zimpher, President of the University of Cincinnati, discusses in the video. Will you watch because you want to learn more about AAC, or do you simply want to watch me look like a tremendous dumbass? I think there are possibilities either way.