November 28, 2009

Road Trip with Schuyler

Too cool to smile
Originally uploaded by Citizen Rob
Schuyler and I are coming to North Carolina this week, for the North Carolina Assistive Technology Program's 2009 Assistive Technology Expo. Julie has to work (retail and the holidays make for scant flexibility, as some of you doubtless know already), so it'll just be the two of us.

Will there be trouble and chaos? Come see us and find out. (Smart money says chaos for sure.)

Here are the details:

December 3, 2009
10:00am (Opening Session, Salons A, B, C, D ) - Keynote Address: “Fighting Monsters with Rubber Swords” - Robert Rummel-Hudson (Author, Parent)

12:30pm (Salon C) - “Implementing the Big Box of Words: A Parent’s Perspective” - Robert Rummel-Hudson, Author, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St. Martin’s Press 2009) - Listen to a father’s observations on the implementation of AAC in the daily life and school curriculum of a nonverbal child.


December 3 - 4, 2009
2009 Assistive Technology Expo
North Carolina Assistive Technology Program
North Raleigh Hilton, Raleigh, NC

What: The Assistive Technology Expo is an exciting two-day event designed to increase awareness and provide current information on assistive technology. Conference offerings include an exhibit hall (on 12/03/09 only) featuring 30-40 vendors exhibiting the latest in assistive technology products and services, 40 concurrent sessions, a poster session and a Keynote address. Featured Tracks: Work, Education, Vision, Home Modifications and Promoting Healthy Living/Recreation.

Who: Each year between 550-700 registered participants from across the country attend the NC AT Expo and approximately 1250 attend the free Exhibit Hall. Participants include: persons with disabilities, family members, teachers, therapists, Vocational Rehabilitation and Independent Living staff, rehabilitation counselors, employers, engineers, college professors, medical staff, college and university students, and authorized state purchasers.

November 22, 2009

CP Study

For parents of kids with cerebral palsy, I'm posting this on behalf of Adam Bowker. Adam is a speech pathologist and AAC researcher whom we had the pleasure of meeting at the American Speech Language Hearing Association Convention last year. He's one of the good guys.


Dear parents,

I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).

Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.

Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.

If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: | phone: 814-865-5850

November 19, 2009

More on Bernie Goldberg

(Heh. "More on Bernie Goldberg". I'm twelve.)

I had listed these updates on the last blog post, but at this point, I think they probably deserve their own post. So here you go:

Update: I posted a comment on his blog (and you can, too!):

Robert Rummel-Hudson says:
November 19, 2009 at 10:56 pm

The thing is, and I suspect you are fully aware of this, parents of kids with disabilities aren’t offended because of your conservative positions. We’re offended, deeply offended, because you have taken our children’s plights, their very LIVES, and you have turned them into talking points. You’ve politicized the most personal and difficult decision a family can face, all in the service of a cheap shot.

Here’s a secret for you, although if you had any experience with or sensitivity toward children with disabilities , it wouldn’t be a secret at all. Most of us who are raising children with disabilities don’t hate Sarah Palin, no matter how liberal our politics might be. We may hate her politics, but she’s part of our club. It’s a club none of us ever asked to join, and it’s a club with a lifetime membership. And for Sarah Palin, as with the rest of us in that club, the politics of disability will be personal for her.

As a non-member of our club, please do us the courtesy of politicizing your own children and leave ours alone. They have enough to worry about as it is.

– Robert R-H

Update to the update: A very interesting, very intelligent comment was left on Mister Goldberg's blog that you definitely have to read. It presents, among other thoughtful points, a simple math question.

If, as reported by King's College in London, roughly 90% of fetuses diagnosed with Down Syndrome in utero are aborted, and if Down Syndrome is the result of a genetic defect that does not affect any one particular ethnic or demographic group more than any other, then clearly, liberals aren't the only parents making the difficult and heartbreaking choice to have abortions when faced with the prospect of having a child with Down Syndrome. More to the point, there are families, a LOT of them, who consider themselves to be religious, and who identify as Pro-Life, who are nevertheless making a very tough and very personal decision, and they aren't basing it on politics.

Bernie Goldberg, I hope you will consider the possibility that this decision might just be more complicated than you are allowing in your idiotic Fox News sound bite. It might be time for you to apologize for what was, upon further reflection, a deeply stupid comment.

Because I am rather fond of oxygen, however, I won't be holding my breath.

Update cubed: Bernie has issued a statement about his remarks. Buried deep within his post, near the end, is something like an apology:

As for Palin’s decision not to abort her baby with Down Syndrome: Women and their husbands should do whatever they think is best in those circumstances. I have no say in those matters and I would never try to influence someone’s decision in that area. It’s simply, and obviously, none of my business. But I am asking this: Who is more likely to have the baby with Down Sydrome, a pro-choice woman or a pro-life woman? A woman who isn’t religious or one who is? A woman who believes a life – even a life of a fetus – is sacred, or one who doesn’t? I know there are many who will disagree, but I think it’s a safe bet that the pro-life, religious woman who believes in the sanctity of life is more likely to go continue her pregnancy (even as many who fit that description will abort a fetus with Down Syndrome).

That’s all I was trying to say. I never thought I was “politicizing” anyone’s children or anyone’s pain. If I did that, my sincere apologies to one and all. But I still believe many elite liberals hate Sarah Palin for a whole bunch of reasons that have little to do with how she would vote on this issue or that — or even, as they often claim, because they don’t think she’s that smart, There are lots of lbierals who aren’t “that smart” — and they don’t seem to trouble their fellow libs all that much.

So there it is, Bernie Goldberg's sincere apology, wrapped in layers of justification and parting cheap shots like bacon, and of course followed immediately by a sentence that begins "But I still believe...". It is, in fact, a pretty weak apology, insulting enough that I almost wish he'd just said "Fuck you, I stand by my words!"

Bernie Goldberg's career as an author and a talking head is entirely, completely, 100% based on his ability to politicize every issue that he touches and to demonize and dehumanize people whose political beliefs differ from his own. If he admits that he crossed a line and that some of the heartbreaking, grey-area moral questions faced by families like ours can and should transcend red/blue politics, then he weakens his brand. I suspect, therefore, that this is as good as we're likely to get.

So thanks, Bernie. You're a peach.

A Message for Bernie Goldberg

I'm going to start off by saying that I had no idea who Bernie Goldberg was before this. A few minutes on Wikipedia and his own website told me plenty, that he's got a snappy suit with a nice tie, and that he's a conservative writer with a penchant for hyperbolic book titles. And that's fine, really. There are plenty of conservative writers whom I've admired in the past. (Well, "plenty" is perhaps pushing it.) I realize that sounds dangerously close to "some of my best friends are black", but it is what it is. In my own writing, I try to be fair and I try not to be boring. (It's harder than it sounds.) Follow those two rules and I don't care what your politics are.

I also never watch Fox News (see above re: fair and not boring), so I probably would have missed Bernie Goldberg's comments if not for Jon Stewart last night. The topic was Sarah Palin, or more precisely the media reaction to Sarah Palin. The part that jumped out at me came at about 6:15 in the show:

The Daily Show With Jon StewartMon - Thurs 11p / 10c
Daily Show: The Rogue Warrior
Daily Show
Full Episodes
Political HumorHealth Care Crisis

If you don't feel like sitting through that, here's the money quote from Mister Goldberg:

"She [Palin] has five kids. Liberals don't have five kids. One of them has Down Syndrome. Liberals certainly don't allow THAT to happen."


So let me strip this of politics for a moment, because I find it equally distasteful when people of any political stripe do this, and I try (with admittedly varying degrees of success, I'm sure, so call me a hypocrite if you like) to avoid doing it myself. But let me just state something that would seem to be torn right from the pages of The Encyclopedia of No Shit.

Families of kids with disabilities are not here to serve as your political talking points.

Whether or not you are a good parent to a child with a disability has nothing to do with your politics. Conservatives have broken children, liberals have broken children, and we all do the best that we can.

Conservative politicians say stupid things ("How does special education, $6 billion dollars, stimulate the economy?" - Sen. John Kyl), and so do liberals (President Obama's idiotic joke about the Special Olympics). If there's one thing I think we can all agree on, it's that neither party has been particularly sensitive to the needs of the disability community, not when it comes to actually doing something besides talking pretty. If you are in public office and your last name isn't "Kennedy", chances are, you haven't done enough to help these kids.

Perhaps I'm just not looking hard enough, but I can't find any information online that suggests that Bernie Goldberg has any particular expertise regarding children with disabilities. I felt pretty confident, therefore, in sending a message to Bernie via Twitter, one that I am absolutely 100% certain will fall on deaf ears.

"Please politicize your own kids, not ours."


November 18, 2009

From the margins

Walking for talking
Originally uploaded by Citizen Rob
Over the weekend, we participated in the 2009 Childhood Apraxia for Speech Walk in Fort Worth. I realize that I almost never use the term "apraxia" to describe Schuyler's monster, mostly because in her case, we know where it comes from, which is hardly the case for many or even most parents of kids with apraxia of speech. We're at least spared some of the mystery, which is no small thing. Think of all the scariest movies you've ever seen; it's the monster you CAN'T see that inspires the deepest dread.

Schuyler's particular affliction, Bilateral Perisylvian Polymicrogyria (PMG), isn't a disease. It's a condition, a congenital malformation of her brain. From this condition spring the symptoms and the disorders and the disabilities that kids with PMG experience, such as epilepsy and apraxia. It's a subtle distinction, and one that is honestly sort of meaningless in the big scheme of things, but it does mean that families dealing with polymicrogyria are also dealing with these other disorders individually. To a parent whose child is being tormented by seizures, epilepsy is a more immediate concern than polymicrogyria. Sometimes the monster's claws loom larger than the monster itself.

So we signed up, raised some money (and thank you to everyone who contributed!), and on a perfect Sunday afternoon, we all met in a park and did this thing. We showed up, freaky non-barking pug in tow (and how perfect was it, bringing our non-verbal dog to an apraxia of speech event?), and I think everyone had a fantastic time. I got to meet some people who'd read the book and have some very meaningful conversations about it, and most of all, we got to spend time with families who are, in one way or another, in the same boat with us.

There were two groups who stood out in my mind at this event, both of whom represent a crucial part of the disability community and have their own unique set of concerns, and yet are both deeply marginalized in typical discussions of disability parenting.

Unless childhood apraxia of speech accompanies other conditions with more obvious manifestations, many of these kids, like Schuyler, can pass, at least at first glance, as neurotypical kids. Indeed, in watching them play together on Sunday, it was hard to tell which kids were apraxic and which were siblings or otherwise unaffected family or friends. Obviously, this is a double-edged sword. It's a good thing, mostly. These are kids who have one major social obstacle removed from their path, that gut-level negative reaction to someone who appears different or broken. It's that thing that lives in our lizard brain, the caveman instinct that says to flee the afflicted lest you yourself suffer the same fate. Any parent of a child with an outwardly obvious disability can tell you how horrible that reaction can be, even from the most well-intentioned. It's a bullet that Schuyler has largely dodged, and for that I am entirely grateful.

But at the same time, there is another look, another reaction, one that has its own sting. It's the one that parents of kids with autism are often the most familiar with, the one that is stripped of sympathy because your child looks, and here's that word, normal. Your child doesn't have outward signs of their disability, no physical malformations, no tics, no spasms or limps, no prosthetics, no flags that say "Tread carefully here". They appear instead to be children who act out, who choose not to communicate or to interact socially in a way deemed appropriate. Their parents are asked why they can't control their kids. I still remember the surly woman who berated Schuyler for "mocking" her questions with her nonsensical babbling.

It's not a worse problem, and in about a hundred different ways it's the one I'd pick if given a choice between the two possibilities. (What wouldn't I give for that third choice?) But it's real nonetheless, and watching Schuyler play with these kids on Sunday and knowing that anyone walking past would see nothing out of the ordinary, I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."

It's hard for families, and most of all, it's hard for these kids. They want to be "normal", and appearing so doesn't change that. Looking like a real boy wasn't much consolation to Pinocchio.

The other group I saw in greater numbers than usual at the event was fathers. A lot has been made of the fact that mothers comprise the majority of disability caregivers, and for every blog and book out there dealing with fathers of disabled kids, there are many more from the perspective of mothers. The numbers are what they are. I won't try to pretend otherwise.

But I think it's time to start examining some of the underlying reasons that this inequality continues, something beyond "Guys are jerks." Lately, I've had the opportunity to meet some amazing fathers. I spoke on a panel at the Texas Book Festival with two other authors, fathers whose involvement with their children's care was extraordinary and moving. I had lunch recently with a father looking for advice on his own manuscript, a deeply personal look at his experience with a child with autism. And at the Apraxia Walk, I met fathers whose commitment to their kids is unshakable and which should be unquestionable.

When fathers like these come up against a society that expects them to fail their children and which doesn't even bother to make a place at the table for them, they feel marginalized. WE feel marginalized, I should say, because years of loud-mouthed advocacy and publication of a book hasn't changed the fact that I still have to insist on that spot in the discussion, too. For fathers less aggressive and narcissistic than me, the path of least resistance beckons.

I understand that every one of the "special needs moms" websites and books out there has a right to exist and speak to the particular issues faced by mothers of broken children. But I also wonder how many of those particularly "mother" pressures would be eased if we started to make that place for fathers to feel like they are part of the discussion. Because everyone time a writer couches the struggles of families of disability in the guise of "mothers' issues", they are instantly excluding some of the voices that matter the most.

Not all of the discrimination in the disability world comes from outside. Not all the erroneous assumptions are made by people who don't, or shouldn't, know better.

November 10, 2009

Flygirl Realized

On Halloween weekend, we had an amazing experience, one that we're unlikely to forget any time soon. Almost a week and a half later, we're all still talking about it.

And the book festival was fun, too.

A few weeks ago, when they saw that Schuyler had chosen her hero, Amelia Earhart, for her Halloween costume, Austin friends Jim and Pat Howard emailed me with an amazing offer for Schuyler's weekend in town for the Texas Book Festival, assuming we had time. When I read the offer, I knew immediately that we'd make the time.

I'm not sure how long I've known Jim and Pat, although I can remember Jim giving me a hard time about buying my previous car, the admittedly ridiculous Beelzebug, and that was over ten years ago. Jim and I couldn't be further apart in our politics, but we've never let that poison our friendship. As a result, I think that even when we disagree, we do actually hear each other occasionally. We finally met face to face a number of years ago, I believe when I returned to Texas from my Yankee exile, and Julie and I have counted the Howards as constant supporters of Schuyler and this family for as along as I can remember. I was delighted by their offer, but I can't say I was surprised.

So it was that on a beautiful, clear Sunday morning a week and a half ago, Julie and Schuyler and I found ourselves at the airport in Austin, walking out to see what was easily the most beautiful aircraft I have ever seen.

The jet is a Dassault Mystere Falcon 900, built in France and considered to be among the finest, if not the finest, civilian aircraft that a gigantic box of money can buy. (According to the Dassault website, there are only 160 of them in the world.)

The pilot of the Falcon is Kyle Kimmell, and from the first moment we met him, he impressed us with his kindness towards Schuyler, his patience with her and his appreciation of her enthusiasm. I can't even begin to express how generous it was for him and for the plane's owner to have prepped and made available for her to see it like this. The Falcon was sleek and perfect on the outside, and indescribably plush in the cabin, but Schuyler was only interested in the cockpit. Kyle explained what all the controls did, he didn't flinch when she grabbed the headset and put it on, and he even let her start up the engines. (I suspect she burned about a month of my salary's worth of fuel while we were sitting there.) He was more than patient. Kyle seemed genuinely happy to show this amazing aircraft to Schuyler, and he thanked us for bringing her more than once.

And really, getting to go on board the Falcon and sit in the cockpit and fire up the plane's systems, all of that would have been enough to make Schuyler's whole year.

But we were just getting started.

Jim is a member and past president of the Chandelle Flying Club in Austin, the group that owns the 1978 Piper PA-28 Warrior that he took us up in. Like her hero Amelia Earhart, Schuyler got to take to the air.

Owing to a lack of space and Julie's intense and unshakable desire not to leave the ground, the flight consisted of Jim and Schuyler in the front and me sitting behind them. Jim walked Schuyler through the pre-flight check and showed her exactly what he was doing, and then we were off.

Schuyler can be a squirrelly kid when she gets excited, and we were worried that she might get a little flighty, no pun intended. But throughout the whole experience, from the moment we climbed into the plane on, she was suddenly very focused, listening carefully to Jim's instructions and becoming very quiet when he needed to communicate with the control tower. She was a perfect little passenger as the plane took off and as Jim climbed to about 3000 feet.

And then she became a perfect little pilot.

I don't think she believed that she was actually flying the plane until Jim took his hands off the controls altogether. He showed her the basics of flight control and then, for the bulk of the rest of the flight (excluding the landing, of course), Schuyler piloted the plane. Jim would pick landmarks on the ground, such as smoke from a fire or the glint of the sun on a lake, and Schuyler would take us there, circling the target once we arrived. Jim emailed me afterwards to let me know that she had in fact been flying the plane for most of the flight. "I think she pretty much figured out how to control the roll axis," he wrote. "When I helped it was usually with the pitch axis. As is typical for new flyers she started with a death grip on the control yoke, but unlike some adults I've flown with I was able to persuade her to relax and hold the yoke more gently, which makes flying much easier."

It's a funny thing about Schuyler. She's got this disability, and it throws obstacles in her path every day. School is challenging for her and will only become more so. The social life of a preteen girl isn't going to be easy or gentle on her, either, particularly not in a town like Plano. Her future is harder than I let on sometimes, perhaps because I want her story to be nothing but successes, and I suppose sometimes I don't talk much about the bumps that she hits, or the ones still waiting in the future for her.

But Schuyler is tenacious, and while she loved flying and is still talking about it (and answering happily to "Flygirl"), I don't think it occurs to her that she's unusual for getting to go up in an airplane, to actually take control of an aircraft and fly it. For Schuyler, life seems to be a series of experiences, of new people to meet while she signs books with her face on the cover, to attend a book festival and listen as her story is discussed by a panel of published authors, to see herself or her father on television, or to take to the air. I've gotten a lot of things wrong with her over the years; I've blown it many times as her father. But by introducing her to a world with people like Jim and Pat Howard and Kyle Kimmell in it, and by trying my very best to accommodate unique opportunities for her, I like to think that sometimes I get it right, even if that just means getting out of her way. I'm forty-one years old and I've never flown an airplane. I like to think that Schuyler's life experiences will intensely outshine my own. In all the significant ways, they already have.

All of this is to say that I am immensely proud of Schuyler, more than I have words for.

Jim described Schuyler as "a real ball of fire, with the heart of a lioness". I felt bad for him in one moment, when he took the controls to show Schuyler exactly how steeply the plane could turn. I'm not sure what he thought he saw when he glanced over at her, but he seemed to think that perhaps he'd pushed it too far, that the daunting angle of the plane had frightened or bothered Schuyler. But midway through the second turn, I tapped her on the shoulder and asked her if she was having fun.

I think the photo I snapped when she looked back at me says it all:

Thanks to pilots Jim Howard and Kyle Kimmell.

"It is before our very eyes..."

Excerpts from remarks by President Obama at the memorial service at Fort Hood, Texas.

For those families who have lost a loved one, no words can fill the void that has been left. We knew these men and women as soldiers and caregivers. You knew them as mothers and fathers; sons and daughters; sisters and brothers.

But here is what you must also know: your loved ones endure through the life of our nation. Their memory will be honored in the places they lived and by the people they touched. Their life's work is our security, and the freedom that we too often take for granted. Every evening that the sun sets on a tranquil town; every dawn that a flag is unfurled; every moment that an American enjoys life, liberty and the pursuit of happiness – that is their legacy.


As we face these challenges, the stories of those at Fort Hood reaffirm the core values that we are fighting for, and the strength that we must draw upon. Theirs are tales of American men and women answering an extraordinary call – the call to serve their comrades, their communities, and their country. In an age of selfishness, they embody responsibility. In an era of division, they call upon us to come together. In a time of cynicism, they remind us of who we are as Americans.

We are a nation that endures because of the courage of those who defend it. We saw that valor in those who braved bullets here at Fort Hood, just as surely as we see it in those who signed up knowing that they would serve in harm's way.

We are a nation of laws whose commitment to justice is so enduring that we would treat a gunman and give him due process, just as surely as we will see that he pays for his crimes.

We are a nation that guarantees the freedom to worship as one chooses. And instead of claiming God for our side, we remember Lincoln's words, and always pray to be on the side of God.

We are a nation that is dedicated to the proposition that all men and women are created equal. We live that truth within our military, and see it in the varied backgrounds of those we lay to rest today. We defend that truth at home and abroad, and we know that Americans will always be found on the side of liberty and equality. That is who we are as a people.

Tomorrow is Veterans Day. It is a chance to pause, and to pay tribute – for students to learn of the struggles that preceded them; for families to honor the service of parents and grandparents; for citizens to reflect upon the sacrifices that have been made in pursuit of a more perfect union.

For history is filled with heroes. You may remember the stories of a grandfather who marched across Europe; an uncle who fought in Vietnam; a sister who served in the Gulf. But as we honor the many generations who have served, I think all of us – every single American – must acknowledge that this generation has more than proved itself the equal of those who have come before.

We need not look to the past for greatness, because it is before our very eyes.


Long after they are laid to rest – when the fighting has finished, and our nation has endured; when today's servicemen and women are veterans, and their children have grown – it will be said of this generation that they believed under the most trying of tests; that they persevered not just when it was easy, but when it was hard; and that they paid the price and bore the burden to secure this nation, and stood up for the values that live in the hearts of all free peoples.

So we say goodbye to those who now belong to eternity. We press ahead in pursuit of the peace that guided their service. May God bless the memory of those we lost. And may God bless the United States of America.