Unthinkable

Too cool to smile
Originally uploaded by Citizen Rob

The tragic story of Maddie Spohr has been making the rounds online, and it's one about which I have been conspicuously silent. Better writers than myself have written about Maddie and the unique role that social media has played in her story getting the attention that it deserves, so I'm not going to add much further, except of course to explain why I haven't had anything to say about it until now.

Quite simply, it's not a topic I can think on at great length before my mind begins to feed on itself. Losing a child is one of the very few topics that I would classify as unthinkable.

The other night (and here's where you get to judge me a little), Julie and I were watching Grey's Anatomy together. We watch each other's shows together sometimes. Julie's finally off the hook with Battlestar Galactica, alas for my Friday nights, but I still join her for American Idol (which we both mock mercilessly, as if we ourselves aren't sitting there watching it along with everyone else) and Grey's Anatomy. I don't want to like it, and there's plenty about the show I don't care for, but there I am on the couch with Julie every week. It's sort of pathetic. BSG really has left a big hole in my tv heart.

(Having said that, if you really need a Grey's Anatomy SPOILER ALERT at this point, you are more pathetic than I, and I'm glad you exist in the world.)

Last week's episode included the story of a terminally ill little girl and her desperate father, a man trying so hard to find a miracle cure for his daughter that he comes very close to missing her final moments. "This next part, she needs her daddy for this part," says one of the characters, and as the little girl slips away, she does so in her father's arms as he comforts her with a description of Mexico, on the trip they'll never take together now. ''Just relax and we'll be there soon,' he says.

Well, you can imagine how I reacted to this. We both sat on the couch with tears in our eyes, staring for just a tentative moment into that void where parents usually refuse to even glance. I finally looked over at Julie and said, "You know if anything ever happened to Schuyler, I wouldn't make it."

"I know," was all she said.

I occasionally hear about what a strong father I am, simply because I've stood behind Schuyler and fought for her all this time, but it's false praise. It doesn't take strength to fight for Schuyler. The honest truth is that it's the easiest thing in the world to do. It's my pleasure and my privilege to do so. It's easy because it's a multiple choice question with only one answer, but more than that, as corny as it sounds, I get to participate in the life of the most amazing human being I've ever met, or will likely ever meet. I get to live with that person every day of my life. Who wouldn't sign on for that? That's not strength. That's selfish opportunity.

When I read about parents like Heather Spohr and Vicki Forman, I get a glimpse of what true strength really is. It takes strength to face the one thing that no parent should ever have to face. It takes strength to go to that funeral, and most of all it takes real strength to get out of bed the next morning, and the morning after that, and all the mornings that follow.

One day, hopefully not terribly soon, Schuyler will have to say goodbye to her poor sad father. If the universe proceeds the way it should, she'll say goodbye, and she'll put on a pretty dress and then she'll put me in a box or an urn and she'll give me back to the earth. It'll be a hard day for her, and I'm genuinely sorry to put her through that, but it'll be a sad page from The Way Things Are Supposed To Be.

To me, as weak as I am, the alternative is unthinkable.

Dumb Man Tweeting

Most days of the week, I listen to a program on my local public radio station called Think. It's been one of my favorites since it first aired a few years ago, thanks to the amazing host, Krys Boyd, who interviewed me on the television version of the show last year, in what was ultimately my favorite media appearance. A few days ago, I turned on the show to find that the guests were Jake Heggie, a composer who wrote a celebrated operatic version of Dead Man Walking about ten years ago (which is being performed in Fort Worth next month), and Sister Helen Prejean, the memoirist and activist who wrote about her early experiences as spiritual advisor to death row inmates in Dead Man Walking. Both the opera and the movie are based on her book.

Sister Helen has been one of my heroes, ever since I was in college. Until that time, like a lot of Americans, I hadn't given the reality of the death penalty much thought. I don't think I was even opposed to it when I was young. It seemed clear to me, you know? Someone kills, they deserve to die. Reading Prejean's book and especially seeing the movie, I realized that the issues are much more complicated than that. I eventually became a committed opponent to capital punishment, even attending a few protests and, much later, helping exonerated death row inmate Kerry Max Cook during his book tour. (That experience was sort of a beating, culminating in being rudely shoved out of the way by Robin Williams. At least I got a good story out of it.) Put simply, Sister Helen Prejean was a driving force in opening my eyes to a cause that I have come to believe in deeply. She's one of my personal heroes.

So when I saw, via a feed from the radio station, that Sister Helen was on Twitter and had posted a message about the show, I immediately sent her a tweet. (God, I hate using that word. I feel like I'm turning into Elmo every time I say it.)

• @helenprejean Thought it was wonderful! Also, you're one of my heroes, which feels like a weird thing to say on Twitter, but there it is.

It felt good to be able to say that to her. And yet, something was bugging me about it. I imagined her receiving it and thinking "Oh, who is this nice person who just said this to me?" And then I imagined her clicking on my name to see what else I had said on Twitter. I clicked the link myself, and I looked at my previous message, the one that she would see if she looked at my feed.

• A farting pug is driving me out of my own apartment. That hardly seems fair. I hope my central nervous system will restart with fresh air.

Yeah. Impressive.

I posted a message to my feed, because what is Twitter if not a place to showcase my bonehead moves?

• I sent a twitter message to one of my personal heroes, only to realize that my previous tweet mentions dog farts. (This hero? Is a nun.)

Yesterday morning, when I checked my messages, I saw that I had received one from Sister Helen. And so when one day Schuyler is old enough to talk about the death penalty with her father, when I can show her the film and even give her a copy of the book and tell her how much I've admired the work of Sister Helen Prejean, I'll be able to tell my little girl that once, I actually received a personal message from Sister Helen herself.

If pressed, however, I'll have to confess to Schuyler that the message said:

• Dog farts don't bother me. Well, mentioning them doesn't! Thanks for the tweet.

That's right. Fellow memoirist? Death penalty opponent? No, thanks to the magic of social networking and my crumbling short-term memory, Sister Helen Prejean was introduced to me as "the dog fart guy".

I'm swell.

REVIEW: Houston, We Have a Problema

In the interest of full disclosure, Gwen is a friend of mine. But that wasn't always the case, and by the time we become friends, I already knew she was a good writer.

I'm not much of a critic, certainly. I've written a few reviews for Amazon, but there are two things I won't do where reviews are concerned. I won't write a bad review at all, first of all. I've experienced the fun of reading a review and hoping it won't rip apart my book, and I'd never dream of contributing to another author's anxiety. But I also won't write a good review for a book I don't like.

I've been sitting on this book for a while because I'm a crappy friend when it comes to following through on things like this. Well, what are you going to do?

---

Houston, We Have a Problema
by Gwendolyn Zepeda

A good read that transcends genre
*****

Gwen Zepeda's novel Houston, We Have a Problema is bound to be pushed into some pretty narrow genre categories -- latina chick lit, perhaps -- which is a pity, because Zepeda has written an engaging and fun work that transcends its regional and cultural environment and is quite simply a well-written and entertaining piece of work.

Jessica Luna is a single twentysomething standing on the edge of change. She finds herself confronting the prospects of changing jobs while at the same time hurtling towards decisions that must be made in her dating life, romantic choices that seem to mirror her career in flux. She jockeys for promotion at an insurance company job that she finds unfulfilling even as she dreams of a career in the art world. At the same time, she teeters between Jonathan, the successful Anglo executive who represents safety but also a step away from her passion and her culture, and the temperamental artist Guillermo, who frustrates her with his unreliability even as he haunts her on a visceral, emotional level. Jessica's superstitious nature leads her to consult Madame Hortensia, a pragmatic fortune teller whose guidance mostly serves to turn her gaze inward. Jessica Luna will find her own answers, if only she can learn to trust her heart.

Houston, We Have a Problema reads like good solid chick lit, but Zepeda delves into topics of race and family dysfunction that give the novel an unexpected depth. It does so, however, with subtlety and humor, and most of all with nuanced, believable characters. This isn't a book I would have naturally gravitated to, mostly because of the genre, but to have missed out on this charming story would have been a real pity. I've been aware of Gwen Zepeda's writing for a while, but with Houston, We Have a Problema, she now has my undivided attention.

The Broken Places

On her return
Originally uploaded by Citizen Rob

Okay, first of all, the important news. Schuyler's solo trip on an airplane? A total success. (Is it mere coincidence that Schuyler recently presented a class report on Amelia Earhart?) Everyone had a great time, my mom got to spend some time with her weird Martian grandchild and get a little better understanding of who she is, and of course Schuyler made new friends on both legs of the trip. Thankfully, the boys she met on the flight back were actually BOYS and not grown men; I must review the concepts of "stranger danger" and "just because your Big Box of Words has (now had) your address and phone numbers programmed into it doesn't mean you should necessarily share that information" with her once again.

All in all, the experiment was a great success, and so I will be ready to put Schuyler on a plane by herself again in another nine years or so. Because seriously, for that hour she was on the plane on Friday, and again on her way back? I aged six months each way. I had no idea that my memory could recall so much of the movie Fearless.

Julie and I spent the weekend in Austin, where, after we got a little business out of the way on Friday, we proceeded to have a swell weekend, just the two of us. It was interesting, visiting parts of Austin such as South Congress Avenue that were sort of new to us, even though we lived there for a year and a half. Interesting, and thought provoking.

What we immediately noticed when we visited all the quirky little shops and restaurants was a near complete absence of children. We saw signs in many of the store windows banning strollers and expressing in a variety of cute ways the idea that if kids WERE to come in the store, they were to behave like small adults at all times.

It wasn't necessarily off-putting; these weren't really kid-friendly stores (even the toy stores were more like places for ironic hipsters to buy clever doodads to put on their desks at work to help mask the whiff of corporate slavery), and even if Schuyler had been with us, we always demand (and sometimes even receive) good behavior from her. I'm all for embracing the fun carefree nature of childhood (surely that's no surprise), but I still believe kids need to learn to socialize properly, which often means taking them out to good restaurants and public places that aren't necessarily adorned with cartoon characters. I don't believe in excluding kids from public places, much to the annoyance of many a childfree kook who has emailed me over the years, but neither do I believe in letting them grow up feral at the expense of the world around them.

But what these stores and their environments did bring home to us was the simple fact that Austin in general is not a terribly child-friendly place. I suppose I'm just asking for hate mail by saying that, but there it is. Austin's a city for young people, that much seems clear, but not so much young people starting families. And again, that's fine, we don't need to take over every American city, covering the land with the scourge of Charles Edward Cheese. But this fact might contain the beginnings of an understanding to why Schuyler's school situation there was such a failure, and why she's found so much success in a town like Plano, where one might expect her differentness to be shunned rather than celebrated.

Now in fairness, Schuyler was not in the Austin schools, but in another local school district in the area. But my impression from speaking to a number of parents and SLPs is that while many of the Austin area schools are trying very hard to improve special education in their programs, they are nevertheless fighting something of an uphill battle. A number of Austin schools have been in danger of losing accreditation or even being shut down after receiving unacceptable ratings, including one, the SAILL Charter School, which was established specifically for the purpose of providing a mainstream education to students with disabilities.

Is there a relationship between a community's approach to families and the quality of its schools? That seems like a pretty logical assumption to make, although it would really just be an assumption on my part. But I do think that educational priorities in this country have been seriously skewed for a long time, and in a state with as checkered of an educational record as Texas, the problem seems especially acute. I addressed it in the original draft of my speech to the Texas Speech Language Hearing Association Convention a few weeks ago, and while I eventually cut part of it out in the interest of time, I sort of wish I hadn't now.

The right to an equal education in which every child can communicate and participate at the highest level possible for their abilities is a civil right. If we as a society are going to stand up and say that we believe in a public education for every citizen, we need to make good on that promise, and to put our immense resources and commitment behind that promise. And if we can’t do that, if we can’t educate our people, I’m not sure what’s left to do except sit on the couch, turn on American Idol and wait for the Visigoths to climb over the walls.

I work in the city of Arlington, in the Dallas area, and every day as I drive into the city, I see the looming beast that is the new Cowboys Stadium. I’ve seen it referred to as the Enormodome, although I usually just refer to it as the Death Star. The current cost of that facility is estimated at over one billion – BILLION, with a 'b' – dollars. To assist the Cowboys in paying the construction costs of the stadium, Arlington voters approved tax increases that will provide $325 million in funding. At the same time, about half of the over one thousand school districts in Texas will suffer budget shortfalls this year, including Arlington, which will come up about $15 million short.

We as a society must do better. We simply must.

On the surface, it seems like a city as conservative as Plano wouldn't be a very welcoming one for us. Julie and I are both very liberal, and neither of us is religious at all. (I self-identify as an Agnostic, but Julie is a full-blown Atheist. She's hard core.) But the reality of Plano's conservatism isn't so much that people here are largely rich or Republican or Christian, although those points are certainly true enough.

Plano is a town that values family above all else. They have shown it with a financial and philosophical commitment to education, and the result is a public school system that rivals the best private schools in some other communities. Special education in particular has received a strong commitment here, and while there are problems here like anywhere else, I never see the casual disregard for students with disability here that were so familiar to us before. We've never been told that Schuyler couldn't receive a service because the school couldn't afford it. And as the parent of a special needs parent, that is a very powerful statement to be able to make.

When the McCain-voting, Jesus-loving, SUV-driving people of Plano met the lefty, Socialist, godless Rummel-Hudsons, they saw a family that was willing to pull up stakes and move, as often as it took, to provide an educational opportunity for their daughter. When the book came out, they saw a father who cared and hurt and loved for his little girl, and who was committed to advocating for thousands, maybe millions, of kids like her.

And when they met Schuyler, they didn't see the purple hair or her "Punky Brewster meets The Addams Family" clothes, and they didn't recoil at her disability. They saw her as one of their own.

It might be tempting to try to draw some sort of ideological lesson from all this, and I'm sure a few conservatives will try. But it's not about the politics. There are plenty of wealthy, conservative communities that don't take care of their kids, particularly those with disabilities. Highland Park in Dallas is among the richest in the state, for example, but while neurotypical kids can expect to be very well educated and end up in Ivy League schools, its reputation for special education and for kids who don't fit a traditional learning environment are pretty awful. And two of the great AAC success stories I've seen first-hand were in the very liberal San Francisco Bay Area; one was in Oakland, a community with an extremely diverse student population, to put it gently.

What it comes down to is priorities. And those priorities are set by YOU, the members of the community. You set them when you choose just how vigorously to to fund your public schools, where federal laws for students with disabilities provide protections that don't bind private schools. You chose how strongly to commit to the future and how hard you are willing to work to build a world where every kid is given the opportunity to reach their potential, even those who are broken or those who are gifted in ways that defy traditional pedagogy. Those kids often grow up to be adults who are active and contributing members of their societies, rather than wards of the state. That's a good conservative argument right there.

And as parents in particular, we are the ones who set the expectation for a community and for our schools. I've been writing and speaking a great deal over the past year and a half about empowering parents to advocate effectively for their kids. Not just by being squeaky wheels (although sometimes it's the only option available), but also by understanding how the system works and what they can reasonably expect their schools and teachers to accomplish. I've got little patience for teachers and SLPs who are afraid of the technology and the extra work required to help kids like Schuyler, but I don't have much more for parents who won't make the effort to learn about their child's disability and to research and really educate themselves on the possibilities.

I recently read an essay for the AAC Institute, written by longtime AAC advocate Robin Hurd, titled Defining Our Terms: Perspectives on AAC Funding. One paragraph resonated with me, for obvious reasons:

Several families have gotten their children AAC systems outside of the "normal" process, and are seeing good outcomes for their children who use AAC in spite of the lack of involvement of an SLP. The growing availability of information via the internet makes getting the needed information more and more possible for families. The dirty little secret of AAC is that families are often driving the process. Without the efforts of families, many children who need AAC would not have access to the devices or be taught to use them effectively. While some SLPs are knowledgeable in AAC and are a credit to their profession, too many know nothing about AAC, yet continue to attempt to provide guidance to children and the schools that teach them, to the detriment of the children they are supposed to serve.

It doesn't just apply to SLPs and teachers, and its certainly not specific to AAC users. Parents of disabled children will always be their best advocates, and they'll always find more success when the community in which they live places a high value on educating their kids in general. I understand why many communities want to couch this issue in terms of money. That's why it's more important now than ever to refuse to do so. Special education is a civil rights issue, nothing less. Our commitment to public education needs to be total or not at all. Can you imagine a school district announcing that while they'd love to provide an equal and appropriate education to students of color or lower income, they just can't afford to do it this year? Can you imagine the public outcry? So why is it any different for kids with a disability?

I'm not trying to disparage Austin. It's a city I love and always have. But I'm gradually getting a better understanding of why we might have been destined to fail there, and why we were also destined to find success in the last place we might have looked. I wish there were more places where broken children could find their way, because there's a real value to the community in having these families amongst them, something beyond treacly inspirational stories about God's little miracles or learning to love Holland. It's a tougher value, but it's one that is real.

Hemingway was right. "The world breaks everyone and afterward many are strong at the broken places."

Separation Anxiety

Schuyler & Jasper
Originally uploaded by Citizen Rob

Tomorrow morning, we are going to take Schuyler to the airport, put her on an airplane and send her to spend the weekend with my mother in Odessa. She'll be flying by herself.

No, my blog didn't get hacked. This is really me.

It all started with an out of town meeting that Julie and I had scheduled, one that Schuyler would find crazy long and boring. We began by looking for someone to watch her for that meeting. It wasn't long, however, before we started talking about the forbidden topic, maybe not to all parents but certainly to those of kids with disabilities.

Taking the whole weekend away. Just the two of us. No Schuyler.

It would be the first time we've done that for more than a few hours, in the nine years since Schuyler was born.

The thing is, that's been in part because we didn't have very many options for watching her, but truth be told, we didn't really look very hard until now, either. Even now, when I think about it, all the old whispers return. What if something happens and you're not there?

What that mysterious "something" might be is unclear. She's not had any seizures that we're aware of, and she self-regulates her diet pretty well. The one scary choking incident she's had in the past six months was 100% entirely my fault, in fact, and it couldn't have come at a worse time, in front of my whole family. I think it put the fear of the "something" in them, too. My mom is a little nervous, but after we talked about it, she was game to give it a go. I'm really happy that she's going to get a chance to know Schuyler a little better; if something ever happened to Julie and me, she's the one I'd want to take care of Schuyler. I can't imagine it would be any harder than raising the nasty little shit of a son that was me.

Putting Schuyler on a plane shouldn't bother me as much as it does. The procedure is pretty much the same as when dangerous prisoners are transported, I suspect. I will walk Schuyler all the way to the gate, where she will meet the flight attendant who will be charged with taking care of her. The flight attendant will walk her onto the plane while I stand and cry like a little girl, and I will be required to stay until the plane actually leaves the ground. (As if I wouldn't be there anyway, my face squooshed up against the glass.) The flight must be direct, with no connections, and the retrieving party must be waiting at the gate when she arrives. Schuyler will be handled with as much attention and care as Hannibal Lecter, although I suspect she'll bring better snacks.

When we originally bounced this idea off of Schuyler, we watched her very carefully to see if she reacted with any kind of hesitation or fear. We should have known better. She expressed instant excitement about the idea and has been asking about it for weeks. Her only concession to even the slightest indication of nervousness was her insistence that Jasper accompany her on the flight. Jasper always flies with Schuyler.

The day we told her about the possible trip, she went to her little chalkboard easel and drew three faces. She'd drawn them often enough that I knew who they were. The face in the middle was smiling, while the other two had tears running down their faces.

She indicated that the one in the middle was her, happy because she was going to see Granny. And the other two? Julie and me, of course, crying because we were sad at her departure.

"Waaah!" she said, pointing at us and laughing.

The next morning, she'd replaced our portraits with a drawing of an airplane.

That's cold, Schuyler. Very, very cold.

"Faculty"? Yeah, that should annoy a few people...

Celebration of Faculty Creative Works from 2007-2008

The Office of the Provost and the UT Arlington Library announce the first annual exhibit to highlight recent books, art exhibit catalogs, music recordings and patents of the UT Arlington faculty and staff. Provost Donald R. Bobbitt and Dean of the Library Gerald Saxon will toast all exhibition participants at a reception honoring these individuals.

The depth and breadth of scholarship and creativity at UT Arlington is a great source of pride on campus and beyond. The exhibit will open with a faculty and staff reception on Tuesday, April 14, from 5 – 6:30pm in the sixth floor atrium of Central Library.

For several years the library has sponsored an annual lecture series called "Focus on Faculty," featuring a half-dozen talks a year by award-winning faculty. This exhibit takes it to the next level and features more than 80 entries, recognizing works completed in the 2007-2008 academic year.

A booklet cataloging each entry will be available, and the exhibit will remain in place through May 31, 2009. The exhibit is free and open to the public. Hours of the Central Library sixth floor atrium are Monday, 8am to 7pm and Tuesday through Saturday, 8am to 5pm.

---

(Of all the recognition I've received for the book, the ones at my old university mean the most to me, no doubt because of my less-than-stellar performance as a student. That's right, kids. Stay in school. It's more fun than actual work.)

The silent partner speaks

Those of you who are always saying "More Julie, more Julie!" will be happy to know that she shot video on our trip to Austin, and you can see some of it here, along with the short radio piece that ran on KUT 90.5 Public Radio in Austin.

Don't look for anything capital-I Important here. It's just for fun. (I may post another one soon of the next day, at our signing at BookPeople. So there's something to live for if you're feeling sad.)

TSHA Convention 2009

(Photo by Shannon Sakmary-Best)

So yes, it turns out that 2500 people is, well, a lot of people.

I got a sense of that fact when we went to the sound check the day before the Keynote Session of the 2009 Texas Speech Language Hearing Association Convention. We were looking for Ballroom D, but when we peeked in the door to Ballroom G, we saw that I would in fact be speaking in Ballroom All-Of-Them. The partitioning walls had been retracted and the entire room was open. Three giant screens loomed over the stage, two of which would display my slide presentation (mostly photos of Schuyler, because I'm no dummy) and one which would show my head all giant-sized as I spoke. When we showed up the next morning, the room was full and some people had even been turned away. It feels surreal even to say that, but there it is.

I'm happy to report that the speech went well, I believe. I got a great deal of positive feedback from people afterwards, and no one booed or threw any of their breakfast tacos at me. The book signing sessions immediately following were crowded and friendly, with Schuyler signing in pink and generally charming everyone. (Again, I'm no dummy; I understood who people were there to meet.) I spoke to a local public radio reporter without sounding too idiotic, and we even visited the state capitol building to meet the governor (who was a no-show, sadly; I wanted to see Schuyler give Rick Perry one of her tackle-hugs) and other representatives about some upcoming bills that are of great interest to speech language pathologists and their patients.

Everywhere we went for the next two days, people would come up to us and say that they cried or were inspired by the speech, and I can't even begin to tell you how much that means to me. It's a powerful thing for me to hear because the fact is that we're not that different from any other parents out there who have fought and will continue to fight for our disabled kids. If we're different at all, it's because 1) the book has given us a voice where so many parents have none, and 2) Schuyler's story has a very rare happy ending, or at least a happy beginning. As a result, the idea that I could represent other parents is a humbling one, and one that I take very seriously.

The Texas Speech Language Hearing Association is made up primarily of SLPs (speech language pathologists, if you're not into the whole brevity thing). They represent one leg of the crucial balance for kids with disabilities who attend public schools, with teachers and parents making up the other supports. It's a wobbly tripod under the best of circumstances. I acknowledged in my speech that the two biggest obstacles for SLPs as they attempt to implement therapies and technologies are teachers and parents.

Teachers are overwhelmed by their class loads and by the labyrinthine system put in place by school boards and state-mandated testing and No Child Left Behind, and can be resistant to new technologies and therapeutic approaches. Much of the time they're just getting used to the last Big New Thing that came at them. And parents often feel overmatched by the capital-E Experts they face when they go in for their kid's IEP meeting. Until they take up the fight, educate themselves and become empowered, special needs parents serve as a kind of wind drag on the process, which is unfortunate and even frustrating, because we should be leading the fight, not following hesitantly behind.

Part of why I wanted to deliver this speech was to make the case that when empowered, special needs parents become a powerful force for change and progress. "No one is a quicker study," I said, "than the special needs parent." Julie and I couldn't help Schuyler much; we weren't qualified or trained to do so in a meaningful way. But without our persistence and our self-education and our willingness to be a pain in the ass when it was necessary, Schuyler wouldn't have been helped. She wouldn't have had the opportunity to become who she is today, and who she's going to be tomorrow, or in ten years.

And that's not because we're such swell parents and should be lauded for our efforts. It's because that's our job. And if you're a parent of a special needs kid? It's your job, too. If your kid gets into the finest program in the country, or if they end up in some awful place where they get parked in the corner and are simply fed and watered like a plant until they turn seventeen, the fact remains that eventually, they won't be anyone's responsibility but your own.

And when the school can look up at your kid, shrug and say "Not my problem", you as a parent had better not be standing there thinking that it's time for you to get involved. Because by then, it'll be too late. You will have squandered your opportunity to save your child, and you will get to take over the feeding and watering and regretting the wasted years.

-----

To the SLPs represented at the TSHA conference, I said this:

What does the future hold for kids like Schuyler? I wish I knew. There are so many kids out there like Schuyler, so many stories, many of them sad and most of them overwhelming, and yet the one thing that I truly believe these kids have in common is that none of their future stories is written. I watched Schuyler defy the expectations of her earliest teachers and doctors, and I've learned to trust in our ability to be a pain in the ass on her behalf. Her support in Plano has been so solid and so consistent that there are times when I forget, for just a moment, how many times she could have been left behind, in general special education classes where she wasn't taught so much as cared for. I forget the devil of low expectations so often assigned to her, and how hard we had to fight to throw those expectations off. If Schuyler has flown as high as she has despite the limitations that were consistently placed on her, can you imagine how far she and all her fellow students might go if, from the very beginning, they could be given an environment that focused not on what they can't do, but on what might be possible? Can you imagine that world where parent/teacher meetings didn't consist of "Here's why we can't try that" but instead simply "Why not?"

As parents of broken kids yearning for repair or compensatory development, we go into battle against our children's monsters clutching whatever weapons we can find. Rubber swords if necessary, nothing but our hands if need be. If we seem desperate at times, it's because we are, we are absolutely desperate, and you'll find that most of us will do whatever it takes to defeat those monsters, or to muzzle them, tame them, to put them on leashes and just manage them. We just don't want to do it alone. We need you. As educators and SLPs, voters and taxpayers, as fellow citizens of the world and children of God, you can be our heroes. We're desperate for heroes most of all. All of you can be the ones who step up beside us and say "Here's a real sword, let's take care of this."

-----

It was an honor and a privilege to speak to so many people, particularly ones who work so hard to help Schuyler and her friends. I would also humbly suggest that it is THEIR honor and privilege, as it is mine, to work with kids like Schuyler. The work is hard. The rewards are immeasurable, and go all the way down to the soul.

---

Before the speech

The line at the book signing

Signing books with Schuyler and her pink pen

Schuyler signing the governor's guest registry

Schuyler with PRC's Tracy Custer

(Photo by Shannon Sakmary-Best)

The Big Room

Okay, so here's where I'm be speaking in the morning, as seen from the back of the room.

The room is so big that the screen behind me will display my big fat head, just so the people in the back can say "Wow, he's not so easy on the eyes, is he?"

(Click on the photo so you can see it in detail. That's Schuyler and me, goofing around at the podium while everyone else is trying to work.)

I'm not paralyzed with anxiety or anything, but yeah, this gargantuan room is a little daunting. I keep thinking of the giant underground hall in Lord of the Rings, as if that giant fire monster is going to show up halfway through and start trashing the place.

I'm looking forward to speaking in it, though. Well, perhaps after I read through my speech again, just one more time.

See you on the other side...

Austin Road Show

Austin
Originally uploaded by Citizen Rob

It's an exciting week for us as the Rummel-Hudson take to the road.

We're heading back to Austin, a town that generates a lot of mixed feelings for us. On one hand, everyone knows how hipster cool Austin is. by golly, and having been in suburban Plano for a few years now, some hipster cool sounds like a nice change of scenery for a few days. On the other hand, it was Schuyler's Austin-area school that failed her so miserably, and Plano's remarkable program that gave so much of her future back to her, so I suppose we're returning with a little bit of "How do you like us now?" going on. Like the Prodigal Son, if he'd gone off and made it big and was just coming back to show his dad what an asshole the old man turned out to be.

We're going back for two events. On Thursday morning, I'll be giving the keynote address at the Texas Speech-Language-Hearing Association Convention, followed by at least one and possibly two book signing sessions with Schuyler. TSHA is the professional organization for speech-language pathologists and audiologists in Texas. This is one of the larger conventions of its kind in the country, and yesterday I was told that so far, about 2100 people have registered to attend the keynote session on Thursday morning. That's a lot of people. Yeah. A lot of people.

Oh, sorry. Paralyzed for just a moment there. Moving right along.

On Friday evening, I'll be speaking and signing copies of Schuyler's Monster at BookPeople, one of my favorite places in Austin. It's one of the more venerated independent bookstores in the country, and I'm really happy to be appearing there. I can't imagine I'll be doing very many more bookstore appearances for this book, after all; it's been out for over a year and I've done a LOT of them already. If this is to be my last bookstore appearance, I feel like it's a good place to end.

So if you're in the Austin area this week, I hope you'll come see us. Julie and Schuyler will be there for both events, which is always a selling point for these things. We'll be easy to pick out of a crowd. Look for the hot pink Big Box of Words.

Big Box 2.0

This isn't a demonstration video of Schuyler using her new speech device (which she has named "Pinkessa", by the way). She doesn't really do much here other than play around with it a little. It hasn't been programmed for her yet, and of course we still have to figure out how all the new features work. Our local PRC rep is going to go to Schuyler's school today to set it up and show her teachers the new stuff, but for the time being, I think Julie and I are on our own. That's fine; we're pretty smart people.

No, this video is purely for the joy of watching Schuyler see her new Vantage Lite for the first time. For a nonverbal kid, she says "This is so cool!" pretty damn clearly.

Yesterday was a good day.

Pink.

It is pink. It is very very pink. I mean, you see photos in a catalogue and you say "Oh, yeah. That's pink." But in person, up close? It is crazy cool Schuyler pink.

Schuyler hasn't seen it yet; she's not expecting it until Friday. She'll be home from school soon, and I can only imagine how messy it's going to be when her head explodes.

---

Update:

She digs it. A LOT.

Of Loopholes and Boxes of Pink

Schuyler and the PRC Vantage Lite
Originally uploaded by Citizen Rob

A week from now, a box should be arriving from Wooster, Ohio. Inside that box will be something that I wasn't sure we'd see any time soon, and it will be arriving under very different circumstances, in a differently life even, than the last box we received from Wooster.

The box will contain Schuyler's new Big Box of Words.

When I mentioned the fact that Schuyler had been approved for funding for the device, I got a lot of questions about it. I thought it would be helpful for some of you if I devoted an entire post to this.

First of all, the device itself. It is the Vantage Lite, built by the Prentke Romich Company, and it is basically the next generation of what Schuyler has now. It will communicate the same way, using PRC's Unity® language system, but with a lot of new features and capabilities. This is what I'm reading (and possibly getting some of this wrong, sorry if my information turns out to be less than accurate):

• The Vantage Lite adds a vocabulary setting -- a 60-key sequence -- to bridge the gap between the simple 45-key setting that Schuyler started on and the 84-key she uses now. Not a benefit for Schuyler, who has been using the 84-key setting for most of her time with the BBoW, but I think it's a good transitional step. That change was a big one and took a while for Schuyler to become comfortable with.

• It has 64k graphic capability, up from 256 colors on Schuyler's device.

• It has something new called Visual Scenes, which allows the user to show large pictures superimposed on the key layout. Say Schuyler has a photo of her family that she wants to display. In Visual Scenes, that photo can take up the better part of the screen, with perhaps some buttons beside it that can be programmed either with words or phrases describing the scene or giving further information. Additionally, the key spaces under the photo can be programmed to identify the subjects of the photo and speak them. Click on my fat head in the photo, and the device will say "Daddy". Think of how tagging works in Facebook and you'll get a pretty good idea of how this works. Now the device is more than just a way to speak. It can become an important digital assistant. The possibilities for school alone are pretty amazing. For example, Schuyler can now give oral reports with multimedia in a way that would have been impossible before.

• Vocabulary Builder now allows AAC professionals (and busybody, know-it-all parents) to teach vocabulary in smaller, more manageable pieces. A text file can be imported into the Vantage Lite with a vocabulary limited to whatever the user requires or can handle at that stage. Vocabulary Builder matches that list against its own stored vocabulary, and any words not on that list are masked from the available vocabulary. This simplifies the search task and reinforces the motor patterning for accessing those target words. Again, not for Schuyler, but it might have made the early days easier for her. I can see how it would be a valuable tool, and it addresses some criticisms of the PRC devices that claim it can be overwhelming and difficult to learn. (I don't agree with those criticisms, but I understand where they come from.)

• There's a brighter display with better backlighting. (Might Schuyler finally be able to use her device outside, in the sunlight? Perhaps!)

• It now has something called Simple Toolbox, which is an alternative to the sometimes daunting Full Toolbox. Selecting this option gives you fewer, more often used menus and functions. (I suspect this is an option mostly utilized by parents.)

• The Vantage Lite has built-in Bluetooth. This could be a very big deal. I have to confess now that I apparently suffered some sort of head injury at some point that turned the part of my brain that should understand Bluetooth into a soft, useless puddle in my head. So I can't explain much about it yet.

• The device itself has been redesigned to be more durable and also much more portable.

I'm also pleased to report that it looks much less... medical, I guess. There's been a growing industry-wide recognition of social stigma as probably the greatest barrier to a lot of kids, many of whom resist AAC technology because they feel it calls attention to their disability. That has certainly been the case with Schuyler on some level from time to time. The simple act of making it look more like a kid's other digital devices (including making it available in different colors) might just go a long way towards making it a more welcome part of their life.

Do you want Schuyler to fall in love with her speech device? Make it pink.

---

Now, about the funding.

The state of Texas has something called the Specialized Telecommunications Assistance Program, or STAP. It provides financial assistance to people with disabilities to allow them to purchase telecommunications devices and services that allow them to use telephone networks to communicate. Qualified state residents can apply for these funds once every five years. (It was around back when we were looking to get Schuyler's existing device, but the waiting period at that time was six months or more. It's now down to a few weeks. Fewer than three for us, actually.)

So yeah. That doesn't sound like it really applies to Schuyler, does it? Well, the truth is, STAP isn't actually intended to fund AAC devices. It's supposed to be used to buy phone systems for people who have difficulty using the phone. The loophole that allows AAC funding is simple. How can you use the phone if you can't talk? Many AAC devices have been adapted for use with telephone equipment, and those devices are available through STAP, or its equivalent, in many states. And that adaptation is as simple as having an external speaker jack. If you can plug in a speaker, then you can plug in a phone adapter. And if you can do that, suddenly you qualify for STAP.

Every state states should have STAP or a similar program (check with your state's Public Utilities Commission), but apparently many of them won't fund AAC devices, or will only buy very limited equipment. Texas got it right for kids like Schuyler, but they did it by accident, I guess.

And that, my friends, is how every so often, the parents of broken children win. We can't fight the system head on. We look for holes in the Armor of No, and we stab with our rubber swords just as hard as we can.

My thoughts on a dumb joke

Okay, so I keep getting email about President Obama's "Special Olympics" remark on Leno last night, so I thought I'd address it here. I don't seem to be seeing a lot of reactions from other special needs parenting writers on the subject, but I suspect that's because most of them see the big picture.

So here's my take, in handy bulleted form:

• It wasn't a very clever remark, and it was obviously ill-advised. I'm not sure I found it outright offensive, but it was extremely disappointing. I was really surprised, and remain so today.

• His quick response showed sensitivity, sincerity and an understanding of just how badly he'd screwed up. If nothing else, he at least understood how badly it would be taken, which is something, anyway.

• Of the nearly $44 billion dollars in federal stimulus aid to schools that's going to be available to schools in the next month or so, $6.1 billion of that will go to special education, specifically to augment funding for the Individuals with Disabilities Education Act. This money can't be used by state and local governments to replace money that they allocate to special education, so it represents a real and significant increase in funding.

• President Obama has pledged to fully fund IDEA during his presidency. (Congress originally promised to fund forty percent of IDEA, with the rest coming from state and local governments, but actual federal funding has never exceeded eighteen percent.) Will he deliver on this promise? I suspect, given his record so far, that he'll try a lot harder than anyone else who has occupied the office since IDEA was signed into law in 1975.

So my opinion on the Leno gaffe? Whatever. Given the choice between insincere platitudes from the likes of Sarah "I'm a FRIEND to the special needs parent; I'm one of YOU" Palin (who just rejected the part of the stimulus package -- $160 million for education -- that would have increased training for special education teachers in Alaska), and a president who made a really stupid joke while actually helping these kids in a real way, I think only an ideologue would choose the former.

And honestly, you should hear some of the jokes that special needs parents make when the rest of you aren't around. If the president makes good on his promises to us, he's welcome to sit at our table and share in our gallows humor, too.

Approved.

Approved.
Originally uploaded by Citizen Rob

Today we got word that Schuyler was officially approved for a next generation speech device.

Did a state agency really just come through for us on the first try, in a timely manner? I'll truly believe it when this paper voucher turns into a new Big Box of Words. For now, however, we are allowing ourselves a little bit of celebration and a lot of renewed purpose towards helping Schuyler accept and flourish on this unnatural way of communicating.

Besides, the new one comes in pink. God help us all.

Meeting the Big Box of Words, 2005

In Chapter 19 of Schuyler's Monster, "A Big Box of Words", I described a short video I'd taken of then-five year-old Schuyler doing some fundamentals on a PRC speech device. She was waiting for her own Vantage, her Big Box of Words, which was still being manufactured for her. She'd been on this loaner for only two weeks.

I'd thrown together this video because Schuyler's IEP meeting was coming up, and I had a suspicion (ultimately correct, as it turned out) that the Manor school district's technology advisor was going to report that Schuyler was incapable of using the high-end device. I wanted to show the members of Schuyler's support team how she used the device in a number of ways, including some one-hit preprogrammed answers, simple sentences about what she wanted to eat, and descriptions of things like colors that required her to navigate through subdirectories. The video made a huge impression and changed many of the attitudes towards Schuyler's use of AAC technology, although ultimately the Austin area school was a failure and we ended up here in Plano.

As I was looking something up for the speech I'm working on for the TSHA Conference next month, I was surprised to discover that I actually still have that video file. I thought you might like to see it for yourselves, if for no other reason than to see little five year-old Schuyler. This really was the beginning of something important for her, and after all the computer crashes and such over the past four years, I was surprised and happy to see that I still had it tucked away.

* * *

(Excerpt from Schuyler's Monster: A Father's Journey with His Wordless Daughter, Chapter 19 "A Big Box of Words")

OPENING SCREEN: MAY 17, 2005"

Schuyler standing beside table
Me: Hello!
Schuyler: (waving) Hi!
Me: Okay, can you come show me your words now?
Schuyler sits down, in front of her Prentke-Romich Vantage Plus
Me: I'm going to ask you some questions now. What is your name?
Schuyler: (touches screen a few times to get to the preprogrammed greetings page) My name is Schuyler.
Me: And how old are you?
Schuyler: I am five years old.
Me: Now, who am I?
Schuyler: (points at me and smiles) Oo! ("You.") Daddy. (points again) Oo!
Me: Thank you! (places a purple rubber duck on table) What color is this?
Schuyler: (navigates to colors page) Color pink. (hits backspace, corrects herself) Color purple.
Me: All right, very good! (Schuyler picks up duck and makes it hop away as I speak.) Where do you live?
Schuyler: (navigates back to greetings page) I live in Austin.
Me: Are you hungry, Schuyler?
Schuyler: Yeah! (navigates to main page) Eat.
Me: What do you want to eat?
Schuyler: Pizza.
Me: Say the whole thing, please. Show me the whole thing.
Schuyler: I want eat pizza.
Me: Very good! (Schuyler laughs and claps.) Are you thirsty?
Schuyler: Drink water.
Me: You want water? Can you say the whole thing?
Schuyler: I want drink water.
Me: Okay, good, we'll do that in just a minute. Do you have a doggy?
Schuyler: (nodding head) Yeah. (navigates back to preprogrammed greetings page) I have a dog named Lulu.
Me: Schuyler, can you tell me what this is? What does it do?
Schuyler: I use this language communication device to help me speak.
Me: Schuyler? What does a monster say?
Schuyler: (giggles and navigates to main page, hits button twice by mistake) Rire! Rire! (claps happily)
Me: Okay, Schuyler, we're all done, can you say goodbye?
Schuyler: Goodbye. (waves to camera) Aye, ah-ee! Aye, ah-ee! ("Bye, Daddy")

The lights came up and the members of Schuyler's IEP team began murmuring among themselves. Margaret sat quietly, her face unreadable. Tammy looked over at me and smiled.

"So that's what she's doing at home," I said, closing my laptop, on which I'd been showing the brief movie they'd just watched. "I shot this two nights ago. She had the loaner device for two weeks, and she had just been using her own Vantage for two days. You can see that even now, she's able to answer questions using preprogrammed answers, and she's able to find and identify colors. She's using multiple levels to find food menu selections, and she's putting her choices into very simple sentences. And she's enthusiastic about it, she uses it now to answer questions that she's perfectly capable of signing. She's just barely getting started on this."

Tammy nodded. "Mr. Hudson, this is great, I'm so glad you brought this in. I've been reading Margaret's report, and I have to admit, I was concerned."

"We just read that this morning," Julie said. "I don't understand what's different at home from what happens when she's here."

I knew exactly what she was talking about.

Static one-hit voice output devices can be utilized successfully if supported in the specific setting. Preprogramming and setup would be necessary to ensure that Schuyler could have powerful and successful communication when she activates the button. The high tech dynamic devices have not been more successful, nor provided clearer communication than her other communication modes. Due to her need to have more opportunity [sic] learning the system, learning the language, and recognizing the power of a voice output, all modes should be used for communication.

Inconsistent willingness to use the devices has also hindered progress. However, Schuyler has great potential to use a dynamic voice output system in the future. Thus, even though the dynamic voice output is not educationally necessary at this point, she would greatly benefit from early intervention and training on the dynamic voice output systems for her future communication.

"I didn't know what Margaret's report said before I videotaped Schuyler on her device," I said, "but I'm glad I did it now. I'm concerned about this ‘inconsistent willingness' to use the device. If there's a difference between what's happening at home and what's happening here, I'd like to bridge that so she's experiencing roughly the same thing in both places. She's thrilled to use it at home. I'd like her to feel that same excitement when she's here."

The meeting went our way, I'm happy to say. The movie had spoken for itself, and while Margaret was still a bit of a pill for the rest of the meeting, she didn't have any serious objections to embracing the device as part of Schuyler's curriculum. Indeed, she'd already said as much, if grudgingly, at the conclusion of her report.

"There's one last issue to work out," said Tammy. "I know you want Schuyler to attend summer school classes this summer, and that was up in the air. The issue is this: will a child regress beyond what we consider to be typical during the summer, to such an extent that she will fall significantly behind her peers in the fall? The irony for Schuyler is that she has done so well on her device and in her general school work that it would be hard to justify her inclusion in summer school.

"However," she continued, "Michelle has suggested that since Schuyler is so new to her device, we should make a request to the board that she be included in the summer program in order to continue her training. I'll let you know in the next day or two whether that's going to happen."

And just like that, the most productive IEP we'd ever had was over. We shook everyone's hand and accepted congratulations. Before people could leave, I stood up.

"The only other thing I want to mention is that when this report says that Schuyler's device is not ‘educationally necessary,' I hope you all understand that we believe otherwise. It is our position that this is the most promising development yet for her, and we'd like for everyone to be on the same page."

It was a snotty way to end things, and perhaps had a touch of "How do you like her now?" but we had fought so hard to get Schuyler that device, and if I hadn't had a big fancy Web site with generous readers, we would have lost that fight. When we stepped back and looked at the whole story of the Big Box of Words, from the earliest discussions to the moment Schuyler's little fingers touched the screen, one thing was consistently true and was now being proven by her own success.

They were wrong about her, and we were right.

(Schuyler's Monster: A Father's Journey with His Wordless Daughter, St. Martin's Press. Copyright 2008 Robert Rummel Hudson )

Meeting Swee

Schuyler got it into her head that she wanted a guinea pig after seeing babies at the pet store over the weekend. After she saw an adult yesterday, however, she was sufficiently intimidated by their size and downgraded her request to a hamster. Given the amount of experience we've had with hamsters and the number of old cages we had sitting in storage, we considered this a win.

Schuyler named her new hamster "Swee". Well, originally it was something like "Sweexblizzyxl", sounded out on her Big Box of Words, but she shortened it. I think Swee is a fine name for a hamster.

That's the rhythm of life with Schuyler. Occasionally her monster gets all the attention, but today it's a baby hamster named Swee.

Casting of pods

If you liked my last entry but found the whole "left-to-right eyeball tracking" thing to be a distraction, you'll be pleased to know that QN Podcast (The Podcast Formerly Known as Quirky Nomads) featured the entry in their March 9th edition, "Ambush". Thanks, Sage!

You'll be even more happy to know that it's not my yokelly voice this time. It's encouraging how much smarter I sound when someone else is reading.

Ambush my heart

Pondering monsters
Originally uploaded by Citizen Rob

Sometimes it sort of sneaks up on us.

Schuyler came home from school without her speech device today, which as you can imagine is a pretty big deal. We were stern with her, in that way that is probably a necessary part of the parenting process but which makes me a little queasy, and we found ourselves back at her school at seven o'clock at night. A janitor let us in, and Schuyler took us to her mainstream classroom. And there it was, the Big Box of Words, along with her lunchbox and a few other items that should have come home with her.

We led her miserably back to the car, lecturing her sternly the whole way. When we got to the car, we talked to her about the importance of having her device with her at all times, both because of her communication needs and the fact that, yeah, she's a nine year-old kid walking around with a $7500 piece of electronic equipment.

Throughout the questions and the admonishments, Schuyler sat quietly, her face downcast and sad. I can't look at her face when I talk to her in those moments, because I'll fold like a house of cards if I see those eyes.

It occurred to Julie that if Schuyler was leaving her device in her last classroom, she must not be using it in her after school program. That's not incredibly surprising since they mostly play and run around, in a rough and tumble environment that doesn't lend itself to using the BBoW. But in addition to any emergency communication needs, Schuyler also does her homework after school, so she needed to have the device nearby and accessible.

"Do you ever even use your device after school?" Julie asked her.

"No," Schuyler answered sadly.

"No? Why not?"

Schuyler hesitated, then started punching buttons on the device. When she was done, she looked up at us, with an expression of sadness and maybe even defeat, a look I very rarely see in her eyes. Rarely, but occasionally. When I see it, I take notice. She touched the speech button.

"They don't know I can't talk."

Yeah, sometimes it sneaks up on us.

I just started to cry, out of nowhere. Julie held it together a little longer, but not long. "She knows," Julie said. "She really understands, doesn't she?"

There was nothing left to say after that. I gave Schuyler a hug, a long one, and we drove in silence to the Purple Cow, her favorite restaurant.

Later, I asked Schuyler who she was talking about. "Who doesn't know you can't talk?"

She signed "friends".

And so it turns out that a father's heart can break twice in one night.

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.