Showing posts with label video. Show all posts
Showing posts with label video. Show all posts

March 1, 2009

Reality Check

As soon as I posted video of Schuyler communicating, the comments began. There were a lot of them saying something similar.

"I thought not only the 'good morning' but the 'what's that?' and the 'I want that' were pretty easily understood."

"Yes - I came here to comment on how 'good morning', 'what's that?' and 'I want that' were all perfectly clear, at least through that recording and the medium of the internet."

"Her speech was clearer than I expected, too, especially considering she had just woken up. I heard the 'Good morning,' 'What's that,' 'I want that' and I thought she said 'I fell on the floor.'"

"That 'good morning' sounded clearer than I sound when someone wakes me up!"

"She was pretty clear. I understood her."

"Like everyone says, those phrases were very clear!"

"Extremely clear AND right when she was waking up!"

"I could understand everything."

"Great job Schuyler... I can understand you just fine..."

"She speaks a lot more clearly than I imagined she did - I, too, can understand most of what she says."


I knew what people were saying, and I appreciated the sentiments behind the statements, and also the sort of literal truth of what they were saying. Still, at one point, I tried to moderate the tone a little with a "reality check" observation:

Her speech is getting a little clearer as she gets older, which is good news and a little bit of a surprise. She still does much better when you have a fairly good idea what she's likely to be saying. And it's funny how much of what we say in a day falls within the bounds of often-repeated "catch phrases" like "good morning and "i love you".

When she launches into a monologue about something at random and you don't have any context for it, it goes back to being pure Martian. Well, baby steps.

But I knew it was only a matter of time before someone said it:

After reading this blog for so long, I was really surprised at how easy it was to understand Schuyler's speech. Yes, she's missing some consonants, but she is much more understandable than you have been making her sound in your descriptions.

The tone was friendly, but the implied message was clear: I have been misrepresenting the extent of Schuyler's disability.

I was struggling to find the right words to respond to this, but then, two commenters on the blog spelled it out better than I could, and with the added advantage of an outside perspective.

The first was anonymous, not surprising since he/she was discussing a family member:
My dad, who is almost completely disabled and has an overwhelming number of health problems, is a highly intelligent man whose physical problems have begun to overwhelm his brain. Even on very bad days, he has an uncanny ability to appear to be communicating far better than he is actually managing to do.

He does this in part by accessing rote forms of speech that let people assume that he's responded appropriately, even if he has not actually followed the conversation correctly. People are often poor listeners, and frequently "hear" what they expect to, rather than what was actually said. This doesn't mean, though, that the speaker has been understood.

I am frequently amazed when other people tell me how lucid he is on days when he most certainly is not. The difference is very clear to me, even if others can't see it in the course of the sort of formulaic conversational exchanges that make up most of his day in his nursing home.

I, too, am surprised that some of Schuyler's speech is so clear, but it seems to me that much of what is clear is also very basic. This in no way diminishes the wonder of that clarity, but the ability to say phrases like "good morning" and that wonderful word "Mama" doesn't imply that discussing ideas or other complexities are also possible.

You describe Schuyler so well that it's impossible not to feel that we know her, at least a little. Your writing about her acknowledges the complexities of her character and her life; I don't see that you have in any way implied that her verbal expression is radically different than what we see here.

It's fairly easy to assume what a bouncy, bright child may be saying at a mall, just as it's easy for people to assume that they know what my dad is saying about his day. But it's quite another matter to discuss ideas, feelings, or interpretations when there are physical limitations to speech. And that, I think, you describe very well in your writings.

And Karen is even more direct:

Well, I'm kind of going against the flow here, but I thought Schuyler was understandable if you were listening carefully, if you knew the context of the situation, and if you had a pretty good idea of what she would say. But if I were to listen to an audio recording of her speaking and didn't have any clues as to what she might be speaking about, I would have had a very hard time understanding her. Her "Good morning" in the previous post was clear, but most of what she said was in this post was understandable because of the context. Even with knowing the context of being in a mall, I can't imagine how complicated it would be if she'd said something like, "Hey Dad, did you remember that store we went to the last time we were here? I saw an ad for them on TV last night and they're having a sale on these really cool T-shirts. Can we go there after lunch and get one?"

And, though it pains me to say this, I didn't think she talked as much as a lot of neuro-typical nine-year-old girls would have in a similar situation. Maybe that's because of her personality. Some kids are more talkative than others. But it could also be because communicating (both verbally and through her BBOW) is frustrating. Certainly it would frustrate me to have to work at something that everyone else seems to do effortlessly. She's a lovely girl, and it's a joy to see and hear her. But I think it seems easy to understand her because a lot of us hear what we want to hear or expect to hear when we're talking to others. It must be hell for her when she wants to bring up a new subject, or have a lengthy in-depth conversation.
They both understand perfectly. They are both absolutely one hundred percent correct.

I understand the desire to hear clear, intelligible speech coming from Schuyler, and it is undeniable that her verbal communication has improved dramatically since we came to Plano and especially since she began using the Big Box of Words.

But there's a hard reality to Schuyler's communication, and some real limits to her spoken language, something that goes beyond "missing some consonants". (She's missing most of them, incidentally.) Acknowledging that particular reality doesn't close doors for her, and it doesn't mean giving up on her. The first step to helping Schuyler, however, comes in understanding exactly where she is and what her current limitations are. Wanting or even needing to believe the monster is smaller than it is, well, that's an impulse I understand completely.

But as far as Julie and I are concerned, sizing up that monster is an important first step. We need proper measurements in order to correctly tailor its Ass-beating Suit.

February 28, 2009

Mall monster

More video. Here's a peek at how Schuyler communicates in the course of a typical evening. She tells a little about herself, orders her dinner at a restaurant, and takes a slightly queasy spin with the camera.

February 26, 2009

Morning monster

I got a fun new Flip Video Mino camera (courtesy of Circuit City's sorrow), and sprung it on Schuyler this morning. She wasn't even remotely interested in getting out of bed until she saw a new gadget. She is her father's daughter.

(Listen for a surprisingly clear "Good Morning".)

January 12, 2009

Maya's Monster

Here's a story I happened across. On one hand, it's a fluffy, feel-good story about a little girl with a disability and her helpful hero dog.

But here's the thing. The little girl, Maya Pieters? She has bilateral perisylvian polymicrogyria, also known as congenital bilateral perisylvian syndrome.

Schuyler's monster.

Her BPP manifests itself very differently from Schuyler's. Unlike Schuyler, this little girl suffers from seizures, frequent and serious. Also unlike Schuyler, however, she speaks.

I don't really have much of a reason for posting this here, except that it occurred to me as I was watching the video that it was the first time I've ever watched video of (much less met in person) another child with BPP. How strange it was to hear her speak.

Also, Schuyler's dog, Max? Totally useless. Sorry, dude.



'Thrown Away' Dog Saves Little Girl's Life
By Laurie LaMonica


December 30, 2008

LANCASTER COUNTY, Pa. -- When the Pieters family adopted Jack, a dog once left to die in a dumpster, they hoped he would act as a constant companion to their daughter, Maya.

They never considered that the Terrier mix would also save the little girl's life, on more than one occasion.

Jack's loyalty -- and keen senses -- have proved that one person's trash can truly become another's treasure.

Just ask 8-year-old Maya, who inspired her family's trip to the Humane League of Lancaster County in 2004. When the Pieters saw how seamlessly Maya bonded with Jack, he had nowhere to go but out of the kennel, and into their home.

"Maya was down on her knees and her face as close to the gate as can be and he's licking her and I heard Maya talk more then to him then she had in a whole week," recalled Maya's mother, Michelle Pieters, of their first encounter with the dog.

The connection was exceptional for the young girl, whose condition forces her to struggle with normal oral and social functions.

When Maya was 3-years-old she was diagnosed with congenital bilateral perisylvian syndrome, an extremely rare condition that only 100 to 200 people in the world are reported to have.

The disease affects Maya's oral motor functions -- such as speech and swallowing -- and could cause seizures. But it also took a toll on Maya's self esteem. Always left out by other children, Maya became very withdrawn at a young age.

Maya's speech therapist, Donna Buss, suggested the Pieters family get a dog in 2003. She thought it might benefit Maya's socialization skills. Buss says Maya's shyness made their sessions difficult -- at the time, very little progress was being made.

So the Pieters launched a search to adopt the perfect dog. It took one year to find one that Maya felt comfortable with -- but the wait, in the end, was all the more worthwhile.

Though flea infested and dirty, Jack was the miracle for which the Pieters were searching.

Maya bonded with Jack instantly and the connection would prove more significant than Maya or her parents could have ever predicted.

Jack was sleeping in his crate one morning last year, when suddenly, without apparent provocation, he leaped from his bed and darted up the steps to Maya's room. The door was closed, but Jack sensed that Maya was inside -- and that she, for whatever reason, needed help.

The dog began to relentlessly claw and bark at the door, until Maya's family took notice of the dog's frantic state.

Jack, the Pieters realized, knew exactly what he was doing. Maya was found in her room, having her first seizure in her sleep.

Jack's urgent response to Maya's seizure probably saved her life, as the seizure was a new, unprecedented symptom of her condition.

The Pieters took to calling the little shelter dog "Maya's guardian angel."

Since that first episode, Maya has suffered other seizures. Each time, Jack has been able to preemptively sense when Maya is about to have a seizure. He has broken her fall, sat on top of her to help settle her convulsing body, and when she finally wakes up, licks her tears dry.

Jack has helped Maya in other ways as well. Upon adopting the dog, Maya's oral motor functions have improved drastically. Before Jack, Maya did not speak very often and was very sensitive to her face being touched.

Jack has helped Maya overcome these problems with routine face lickings, playtime and simply standing in as Maya's constant companion.

All of these accomplishments led to Jack's nomination for the Humane Society of the United State's "Valor Dog of the Year," an award to honor and celebrate dogs that have performed extraordinary acts of courage.

Jack competed against heroic dogs across the country, and although he didn't win the main prize, he was granted the "People's Choice" award.

Jack may have no idea he is nationally known for his good deeds. All he knows is someone once gave up on him, threw him away like a piece of trash.

And now, he is loved by a family, cherished by a little girl. In return, as much as Maya Pieters gave him a new chance at life, Jack has given her the same gift, as well.

September 11, 2008

I made the DaFoWo Show!

Okay, I'm going to geek out a little now, because this is actually my favorite web program, and I got some serious screen time on it. (I'm about three minutes in.) It's a weekly webcast sponsored by the Fort Worth Star-Telegram, featuring Kristin Campbell and John Metz, who do the hosting, the writing and the very fun editing. It focuses on local Fort Worth/Dallas content, but I don't think there's a lot of inside humor. Go check out some of the older shows, too, at www.dafowo.com.

Anyway, thanks, Kristin!

September 9, 2008

The best job ever

Seriously. Getting to chase kids around the museum? I'd only require the assistance of someone to keep me from slipping in the little pee puddles left behind.

Also? I'd be Schuyler's hero. For life.

(My apologies if you came here looking for political content. If it makes you feel better, you can pretend it's John McCain at a campaign stop.)

May 30, 2008

Book Launch 2.0

This is one of those things that if you're an author, it feels so truthful that while it's really funny, it also stings just a bit.



Film by author Dennis Cass. (Thanks, Karen...)

May 16, 2008

Getting Schuyler


I never know what I'm going to write about here, and really, it could be anything. (My elderly but faithful car Beelzebug is going to get a post soon, after all.) But in general, there have been two kinds of entries that come up the most in recent months: Schuyler and Schuyler's Monster.

I make no apologies for writing about the publication experience, by the way. If I am blogging about my life and in particular my life with Schuyler, then the fact that it's a memoir, and more specifically a memoir about her, means that when people say "We want to hear more about what's going on with Schuyler!", this is a huge part of what's happening right now. So yes, in general of late, you've gotten a lot of two things. Either I'm trying to make Schuyler come to life for you, or I'm talking about the book and its media exposure.

Tonight, I'm happy to announce that I'm going to do both.

The story that Fox 26 Houston reporter Greg Groogan and special projects photographer/editor Matt Matejka put together was broadcast earlier tonight in Houston. It looks like it's going to run in some other markets, including the Dallas area, so don't be surprised if you see my big, white, doughy Robba the Hutt head on your tv soon. And possibly during the dinner hour, too, for which I can only say that I'm truly sorry. It doesn't exactly do my poor heart good either, looking at that face every morning. You at least get to look like you.

It's a different kind of story than has been done before, I'll say that right off. It's of a somewhat higher pitch emotionally, for example. But I like it, and the primary reason for that is simple.

They captured Schuyler. In the short space of the story, and really mostly in the latter half of the story, they show the Schuyler that I know and love and have been trying for all these years to show to you.

A lot of people are curious about her. They want to see how she talks and how she uses her device, and they want to know some very simple things. For the people who have come to feel emotionally invested in Schuyler (and I am learning that there are more of them than I ever imagined), they want to know most of all that she's happy.

And if there's nothing more that you take away from Greg's story, I hope that you'll see just how happy she really is. I see Schuyler's happiness and I want it for myself, I want to laugh like that every day of my life.

And the funny thing is, because of Schuyler, I usually do.

Thanks, Greg, Matt and everyone else at Fox 26.

MyFox Houston | Schuyler's Monster: Texas Dad Writes Book About Child's Disease

May 12, 2008

Tagged

I made it into this week's Tagged!, a weekly video series about books on the Barnes and Noble website. It's hosted by Molly Pesce, who I believe used to be on that iVillage show. My mention is maybe a third of the way in. They used lots of floating head photos, which was nice.

May 2, 2008

Hello there, Houston


Schuyler & Jasper
Originally uploaded by Citizen Rob
UPDATE: I just heard from the reporter. Apparently his bosses like the story so much that they are going to hold it for a bigger ratings night and do some local promotion for it. So look for this to run on May 12th.

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If you live in Houston, you can catch Greg Groogan's story on Schuyler's Monster and the Rummel-Hudsons tonight at 9pm Central on Fox 26.

For those of you not in Houston, you can watch a live video stream. (It shows traffic the rest of the time, which I've found myself strangely mesmerized by all morning.) I'll post a link to the story at the end of this entry as soon as it goes up, probably tomorrow.

I think this is going to be a good story. I got a little sneak preview of the script in progress the other day, and it's a little more dramatic and personal than the ones we've participated in before, which is sort of fun. It's nice to change thing up now and then.

While I was watching the live feed this morning, I just happened to catch the "what's on tonight's broadcast" guy:

"Tonight you're going to meet a father whose successful struggle with his daughter's autism has led to a novel."

Well, okay. Close enough. At least he didn't say she had monkeypox.

April 28, 2008

Chapter Seven

First of all, can I get a woo? Why, thank you.

One of the parts of Schuyler's Monster that has gotten the most attention has been the notorious "Chapter Seven", which has become a sort of shorthand between Julie and myself. ("What's going on with them?" "I think they're having a Chapter Seven moment." "Oh, shit, that's no good...") The Fox reporter from Houston who came to see us a few weeks ago, Greg Groogan, did a piece this morning about the issue:

Raising Autistic Children Making Marriages Difficult

His story on Schuyler should run at the end of the week.

April 24, 2008

When the visigoths get to the gate, I hope they have flag pins

Every now and then, someone will email me and ask if I ever intend to talk about politics again. This blog has sort of turned into the Rob & Schuyler Show, and that is in part intentional, especially for now while the book is new and people are coming here as a result.

But the truth is that I just haven't had much to say about politics. I've become so disheartened by the whole process that honestly, I don't have much to contribute. I've become the saddest of Independents, the kind who has given up on the two parties as Evil (R) and Incompetent (D). I'll never believe in the Republicans because they stand for everything I deem to be foul, but the Democrats? I may actually despise them a little more, since they dress themselves in my progressive values and then achieve almost nothing of worth at all. Both parties have achieved a level of consistency. I can always count on the Republicans to do the wrong thing, and I know the Democrats will follow up by trying half-heartedly to do the right thing, maybe, if the polls say they should, but ultimately fuck it up catastrophically.

Anyway, I've placed a little Obama widget on the sidebar there since unlike the Nixonian Hillary or the Magoo-like McCain, I can at least believe in what he says he stands for, and his much-maligned "lack of experience" means that he hasn't had time to really don the Cloak of Disappointment yet. But in my heart of hearts, I suspect he will. (Bill Clinton did, after all. Good lord, he needs one good and true friend, someone who's not afraid to lean over and say, "You really need to shut the fuck up now.")

Anyway, since the primary race has officially and flatulently stunk up just about every corner of the media and trying to ignore it is becoming impossible, I thought I'd let The Onion speak for me.


Poll: Bullshit Is Most Important Issue For 2008 Voters

Good Morning Texas Redux

Some of you were having trouble seeing the video from the WFAA site. Also, it cut off at the end before you got to see Julie's Stepford Wife smile and Schuyler mentally compiling her list of places she would rather be at that moment. So here's another shot at it. (Sorry the quality is sort of weird. I'll keep working on it.)

April 23, 2008

Good Morning Texas


Good Morning Texas
Originally uploaded by Citizen Rob
Well, that was fast. My interview on Good Morning Texas is already online, so go check it out. I'm sorry to say, this clip cuts off before you get to see Schuyler and Julie sitting in the studio, so sadly it's just me and my unusually large meaty head.

I thought it went very well. It's hard in these very short segments to really get into very much of depth, but Paige McCoy Smith managed to cover an astonishing amount in a brief period. She asked me about my faith, which was a little unexpected (although she did give me a heads up before we started) but something that I was actually happy to talk about. It's funny, but the interviews for which I am the most prepared in terms of knowing questions in advance and what my answers will be, those tend to be my least favorite, and the ones that I think are the least interesting. Discussing my feelings about God on live television isn't something I would have ever expected to actually enjoy doing, but I'm glad she asked it. My answer was pretty much on the fly, and yet I'm entirely happy with it.

Another thing that Paige brought home to me was just how much I enjoy doing interviews with journalists who have actually read the book. That seems like an obvious point, but you'd be surprised. And it's always obvious, too. Not so much that they know facts that are pertinent, although that's part of it. (My favorite from a past interview was, about Schuyler's static brain condition, "Good luck with her continued improvement.") It's more that once you've read a book, you know a great deal about the author's personality and beliefs and such than you'll ever get from a press release or a book flap description. Paige McCoy Smith and KERA's Krys Boyd and Fox's Greg Groogan were responsible for interviews that I've enjoyed immensely, for just that reason.

Schuyler had a great time, of course, and charmed the pants off of everyone, as usual. The studio at WFAA is wide open, with glass walls everywhere, even the green room, so while you're waiting, you can see much of what's going on. She spent the better part of the morning having her mind completely blown, and finished off the experience by eating the strawberry smoothie prepared in a segment by "celebrity chef Jon Ashton". Julie finished up the morning by slobbering all over "celebrity chef Jon Ashton". It's sad, really, watching a woman of her advanced years lose her dignity like that. Really unfortunate.

Okay, so I really shouldn't tell this story, because past experience suggests that the chances of it getting back to the parties involved are somewhere near 100%. But it's been a while since I've started any trouble online (at least here; I've been poking a bees' nest on a parenting site on the topic of spanking, a metaphor that only works if you imagine really dumb bees), so I think I'm due.

While we were waiting for the show to begin, we were sitting in a room watching "Good Morning America" with two fashion models who were going to be on a segment before mine. GMA was interviewing Marlee Matlin about her appearance on "Dancing with the Stars", and she was signing away as she talked.

One of the models turned to the other and said, with absolute sincerity, "Do you think she's deaf?"

March 24, 2008

Mockingbird


Mockingbird
Originally uploaded by Citizen Rob
A few quick book things to report. First of all, the book trailer I put together last year is being featured on the Barnes & Noble site, thanks to the tenacious work of the very cool Monica Katz at St. Martin's. I'm really happy with the continued support from St. Martin's. Also, while I am as "Fight the Man", pro-independent bookstore as anyone, I'll never say a word against Barnes & Noble, who have gotten behind the book in a big way.

Back in the spring of 2003, Jim Shelton at the New Haven Register in Connecticut did a feature about local bloggers, and was kind enough to write about me then. It was fun at the time, although the story of us changed rather dramatically a few months later when Schuyler was diagnosed with polymicrogyria and our world turned upside down. Last week, Jim called me up and we talked for a bit, and the result is a new story in the New Haven Register. It was a nicely done story, and it felt a little like a homecoming for me. I miss New Haven like mad.

Last night marked the end of Spring Break for Schuyler and me. Julie had to work most of the time, so we didn't go crazy this past week, but instead just sort of enjoyed the time together. We hung out, flew kites, watched a lot of Kim Possible (one of the few shows that Schuyler watches that i can stomach; it is the anti-Hannah Montana for me), and even went to a dog parade. It was a nice week.

After Schuyler went to bed last night, Julie and I watched To Kill a Mockingbird again. I can't tell you how many times I've seen it, or how many times I've read the book, for that matter. They seem like two parts of one whole experience, so perfectly matched as they are, in a way that is rare for books and their film adaptations.

I've loved that book most of my life, ever since the first time I read it back when I was probably about the same age as Jem Finch. And yet, in looking back on the years, it seems strange that I would have ever known that book or the film without associating them with Schuyler. I watch the movie now and I am aware of the relationship between the father and the daughter, the wild and different little girl who is curious about a world that is meaner than she is but which is also full of mysteries to be explored.

I always identified with the kid characters growing up, like just about anyone else who read it when they were young, but now I find myself experiencing the story from the perspective of the father. Atticus tells Scout that you can never truly understand someone until you see the world from their perspective, to climb in their skin and walk around in it for a little while. I think I finally understand.

It's an imperfect parallel, of course. Schuyler is herself equal parts Scout Finch and Boo Radley, and I am no Atticus Finch, although God knows I do try.

March 21, 2008

Bok bok

Rather than make my usual, snotty and perhaps predictable "Zombie Jesus" jokes about Easter, I thought I'd remind everyone of the most persistent Easter memory most of us (or a certain age) still retain.






Well, okay, perhaps not the ONLY memory...

March 9, 2008

Schuyler in the Dallas Morning News

"New book chronicles Plano girl's battle with disability that's left her unable to speak" - Dallas Morning News (March 8, 2008). Annette Nevins reporting.

---

With apologies to everyone else who has written about Schuyler over the past few weeks and months, I have to say that this story, which apparently ran in yesterday's Dallas Morning News, is my favorite so far, if for no other reason than the video. We pretty much disrupted class for the better part of a morning to get this, so I'm glad it worked out. (I hadn't disrupted a class and gotten away with it in a long time, so it was nostalgic. And I didn't even have to make any fake fart noises to do it, either.)

Today is my signing in Austin, at the store where I once toiled for The Man. Funny how things turn out sometimes.

March 3, 2008

"Positively TEXAS!"



Another TV moment, from "Positively TEXAS!" on CBS 11 in Dallas, hosted by Iola Johnson. I didn't expect it to run until next weekend, but my DVR is apparently smarter than I am.

This interview felt a little awkward, for some reason. Perhaps it was all those extra chins I wore that day. Good lord.