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