To help make up for the sad, gloomy Grim Reapy nature of that last post, here's a little something that Schuyler and I did tonight while practicing her marimba music for her next concert. I asked her if she wanted to share any of it with all of you, and we went through all the clips we shot and found the two she liked the most:
And then we started to have some fun, and ended up with this unedited and unrehearsed forty seconds, which is now just about my favorite thing we have ever committed to video.
Ladies and gentlemen, The Awesome Song:
Showing posts with label video. Show all posts
Showing posts with label video. Show all posts
January 30, 2012
December 13, 2011
A Ghost of Christmas Past
I unearthed another short video, this time from Christmas of 2002. Schuyler had just turned three. She didn't care much for her presents, but she dug the snow and she loved her mother and father without limits. And her mittens didn't fit. That was Schuyler in the waning days of 2002.
This was the last Christmas we had without the known presence of her monster, and all the heaviness in the air that accompanied that knowledge for so many years. It was also our last real Christmas in New Haven, Connecticut. By this time the next year, we were on our way to Texas.
Nine years, wow. It feels roughly a thousand years ago. Approximately.
As long-time readers will remember, we used to call Schuyler "The Chubbin". You'll see why. It's hard to reconcile that fat, totally wordless little monkey with the tall drink of communicating water we have now.
I sort of wish I could warn that family how much sorrow was waiting for them, and how much joy, too. Mostly the joy.
This was the last Christmas we had without the known presence of her monster, and all the heaviness in the air that accompanied that knowledge for so many years. It was also our last real Christmas in New Haven, Connecticut. By this time the next year, we were on our way to Texas.
Nine years, wow. It feels roughly a thousand years ago. Approximately.
As long-time readers will remember, we used to call Schuyler "The Chubbin". You'll see why. It's hard to reconcile that fat, totally wordless little monkey with the tall drink of communicating water we have now.
I sort of wish I could warn that family how much sorrow was waiting for them, and how much joy, too. Mostly the joy.
December 3, 2011
A Good Day, with an Asterisk
Mostly.
After a semester of hard work, Schuyler's beginning band class held an in-school recital; in her case, the beginner horns and percussion. Schuyler has been excited but anxious about this performance. I'm not sure she's completely accepted that she was really going to be able to be a member of something like a band program. She's been a little hesitant, as if someone was going to take this away from her. Being able to participate completely and meaningfully in an actual performance was exactly the thing to convince her that this is all for real, and hers if she wants it.
So it was a big deal, this performance.
Still, when I walked into the school, I wasn't expecting to see two of our very best friends, Schuyler's godparents, waiting inside. I actually did an old movie-style double-take when I saw them. Their attendance was no small thing; they live about six hours away, after all. Jim and Kim have been huge supporters of Schuyler's all along. Jim is an old friend from high school who is now an exceptionally talented band director; his wife directs the color guard at their school, the girls whom Schuyler still refers to as her "sisters". When they learned that Schuyler had a rough week with at least one seizure and probably more, and knowing how important this first performance was to her, they simply piled into their car and drove to Dallas.
Just like that.
Schuyler loves Jim and Kim without hesitation or limits. When she saw them, she waved and smiled a smile that was pretty much in evidence throughout the performance. She ended up doing very well on the recital, and loved every minute of it.
Don't believe me? See for yourself:
After the performance, we scarfed up some free cookies and spent some time visiting with to Schuyler's band director. She's an overbeliever; we like her very much. Afterwards we killed some time until Julie got off work and then headed out for dinner.
It was then, in the car, that Schuyler began to unravel.
Julie noticed it first. Schuyler was trying to tell her something, but her speech was suddenly very hard to understand, almost like a baby babbling. As we parked the car, I turned and saw Schuyler leaning lethargically against the door, her eyes distant and her mouth open slightly. I said her name a few times, and she snapped back. She was irritable and disoriented for maybe a minute and remained a little quiet and distant at dinner.
She came back to us, though. For the most part.
We were all a little shaken, as this was the closest any of us had really come to actually witnessing one of Schuyler's absence seizures. But we took our cues from Schuyler, who seemed determined to have a fun evening despite her lingering disorientation and fatigue.
Schuyler had a good day, mostly. At its conclusion, she decided that it should be a good day to the very end, monster or no. We're okay with that decision.
October 2, 2011
Schuyler is my co-pilot
The internet hasn't been a very happy place lately. Here's a little something, just for fun.
September 8, 2011
Asrael
I've had a piece of music in my head for a few weeks now, and I thought I would share it with you tonight because, well, it's on my mind. That's all. Sometimes that's reason enough, you know?
I poked around online and found a performance on YouTube, of about four minutes of music that is, I do believe, the most beautiful music I know. That's really true, and it's not small praise, either. Not to be too arrogant about it, but I know a LOT of music. Furthermore, my taste often runs toward this sort of big, weepy Romantic stuff, meaning that my head is full of a lot of Rachmaninov and Vaughan Williams and Mahler and Schoenberg (the Gurrelieder Schoenberg, not so much the "I hate you, audience! You must suffer now!" Schoenberg). And yet it's this little four-minute stretch of this little-known symphony that gets to me, and gets to me every single time I hear it.
Most people know Josef Suk, if they know him at all, as a composer of fairly light stuff. His name is funny in a middle-school-boy kind of way, and he looked sort of like a chubby little Hitler. (Not really his fault; he died in 1935.) But his Asrael Symphony was different. It was named for the Islamic Angel of Death, cheerfully enough. Suk began the symphony as a tribute and celebration of his late mentor and father-in-law Antonin Dvorak, but as he was working on it, his beloved wife died, and Suk was plunged into despair.
Buried in the middle of this gigantic, heartbreaking symphony of pathos and pain are the four minutes that I'm sharing with you. (There's more after that four minutes, and the whole symphony is fantastic. You could do worse than listening to the whole thing.) And if I played it ten times in a row tonight, I'd find myself teary-eyed ten times.
The thing is, for some reason I associate Schuyler with this music. When I listen to it, I hear pain and I hear longing and love and regret, sadness and joy stuck together like red and blue Play-Doh, forever infused but not assimilated. I hear these emotions all at the same time, as if the yearning and the love is answered by the regret and the pain mid-phrase. All those emotions, all swirling together, not mixing, not resolving, but just existing together. There is sorrow, and there is happiness floating on top of those sad waters. Or maybe it's a sad boat bobbing on the surface of a happy sea.
And now that I spell it out like that, suddenly my association with this music and my sweet, mostly joyful but sometimes sad, broken but perfect Schuyler isn't so inexplicable after all.
I poked around online and found a performance on YouTube, of about four minutes of music that is, I do believe, the most beautiful music I know. That's really true, and it's not small praise, either. Not to be too arrogant about it, but I know a LOT of music. Furthermore, my taste often runs toward this sort of big, weepy Romantic stuff, meaning that my head is full of a lot of Rachmaninov and Vaughan Williams and Mahler and Schoenberg (the Gurrelieder Schoenberg, not so much the "I hate you, audience! You must suffer now!" Schoenberg). And yet it's this little four-minute stretch of this little-known symphony that gets to me, and gets to me every single time I hear it.
Most people know Josef Suk, if they know him at all, as a composer of fairly light stuff. His name is funny in a middle-school-boy kind of way, and he looked sort of like a chubby little Hitler. (Not really his fault; he died in 1935.) But his Asrael Symphony was different. It was named for the Islamic Angel of Death, cheerfully enough. Suk began the symphony as a tribute and celebration of his late mentor and father-in-law Antonin Dvorak, but as he was working on it, his beloved wife died, and Suk was plunged into despair.
Buried in the middle of this gigantic, heartbreaking symphony of pathos and pain are the four minutes that I'm sharing with you. (There's more after that four minutes, and the whole symphony is fantastic. You could do worse than listening to the whole thing.) And if I played it ten times in a row tonight, I'd find myself teary-eyed ten times.
The thing is, for some reason I associate Schuyler with this music. When I listen to it, I hear pain and I hear longing and love and regret, sadness and joy stuck together like red and blue Play-Doh, forever infused but not assimilated. I hear these emotions all at the same time, as if the yearning and the love is answered by the regret and the pain mid-phrase. All those emotions, all swirling together, not mixing, not resolving, but just existing together. There is sorrow, and there is happiness floating on top of those sad waters. Or maybe it's a sad boat bobbing on the surface of a happy sea.
And now that I spell it out like that, suddenly my association with this music and my sweet, mostly joyful but sometimes sad, broken but perfect Schuyler isn't so inexplicable after all.
August 25, 2011
Just a Word: Smarty-Pants Edition
The National Society of Collegiate Scholars has teamed up with Special Olympics for a new public service announcement. The NSCS provides scholarships to students who are in the top twenty percent of their class. They have more than 700,000 members from over 270 colleges in all fifty states and Puerto Rico (you lovely island).
The take-away message might be "Smarty-pants people don't say 'retard'. So don't you do it, either." I can get behind that message.
The take-away message might be "Smarty-pants people don't say 'retard'. So don't you do it, either." I can get behind that message.
May 24, 2011
Not Acceptable
I think the most effective way to get people to stop using the "r word" is not so much to try to ban its use or impose some kind of embargo on it. That approach just seems to bring out the worst kinds of entitled, obtuse, "Fight the Man" arguments about what the word technically means and how we should just make the choice not to be offended, etc. Trust me, I know.
I like this PSA because it makes what I believe is a more effective point, that you ought to care how much your words hurt someone else, but even if you don't, calling someone a retard simply makes you look like a bigot. Or rather, it alerts the world that you ARE in fact a bigot.
Thanks to the Spread the Word to End the Word campaign (sponsored by Special Olympics and Best Buddies), and particularly to Lauren Potter and Jane Lynch. I like this PSA very much.
(I'm still not going to watch Glee, though. Sorry.)
I like this PSA because it makes what I believe is a more effective point, that you ought to care how much your words hurt someone else, but even if you don't, calling someone a retard simply makes you look like a bigot. Or rather, it alerts the world that you ARE in fact a bigot.
Thanks to the Spread the Word to End the Word campaign (sponsored by Special Olympics and Best Buddies), and particularly to Lauren Potter and Jane Lynch. I like this PSA very much.
(I'm still not going to watch Glee, though. Sorry.)
April 26, 2011
Of Monsters and Monkeys
Schuyler invited me into her room to hear a story she was going to tell some of her toy friends. I grabbed the Flip camera and just started shooting.
What you have here is basically about ten minutes of Schuyler being Schuyler, assembling her rogue's gallery of monsters and monkeys and making up stories about dinosaurs and sock monkeys. She didn't actually tell much of a story, aside from an exciting sock monkey fight sequence towards the end, but it's still a good example of what it is like to listen to Schuyler express herself without much in the way of prompting or direction.
I thought about trying to do subtitles, since Julie and I together can decipher most of it, but I don't know. Part of the reality of visiting Schuyler's world, both the charm and the frustration, is the work that you as the listener must do to understand and follow her.
So instead I give you the first line of her story. It makes sense, if you think like Schuyler, which I try to do every day, in my own way.
"One thousand years ago, dinosaurs were dead. They were SO white, like this dinosaur."
What you have here is basically about ten minutes of Schuyler being Schuyler, assembling her rogue's gallery of monsters and monkeys and making up stories about dinosaurs and sock monkeys. She didn't actually tell much of a story, aside from an exciting sock monkey fight sequence towards the end, but it's still a good example of what it is like to listen to Schuyler express herself without much in the way of prompting or direction.
I thought about trying to do subtitles, since Julie and I together can decipher most of it, but I don't know. Part of the reality of visiting Schuyler's world, both the charm and the frustration, is the work that you as the listener must do to understand and follow her.
So instead I give you the first line of her story. It makes sense, if you think like Schuyler, which I try to do every day, in my own way.
"One thousand years ago, dinosaurs were dead. They were SO white, like this dinosaur."
December 26, 2009
Snow Day, 2003
After it snowed the other day, I went looking for video to show Schuyler what we used to call REAL snow. I knew I had some boring old holiday videos I could show her, but in addition, I found this ridiculous little thing I made in February 2003, on a day when we were snowed in with nothing much to do. (That much is clear.)
Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.
A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.
(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)
As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"
Schuyler doesn't remember Connecticut at all, which is sad to me. I miss those days, in part because it was in some ways a much more innocent time for us. In early 2003, we'd gotten past some hard times as a family and we still had that awful polymicrogyria diagnosis a few months ahead of us. Once we had the diagnosis and the monster was out in the middle of the room, it felt like everything had changed, and New England had lost some of its magic. I still wish it had worked out. I miss New Haven, a lot.
A few things stand out in this video. First of all, I was an idiot. But perhaps more important, I can see, to a degree that I guess I'd forgotten, that at the age of three years old, Schuyler was not verbalizing at all, not even a little. I've often pointed out that in the time that she's been using a speech device (which at the time of this video was still two years in her future), Schuyler's verbal speech has improved dramatically. But to actually see how far she's come is pretty striking now.
(I just noticed that the board with her velcro'd picture exchange symbols is visible in the background at one point. God, she hated that thing.)
As for Schuyler, when she saw it this morning, she started laughing and simply said, "Look, I was fat!"
November 19, 2009
More on Bernie Goldberg
(Heh. "More on Bernie Goldberg". I'm twelve.)I had listed these updates on the last blog post, but at this point, I think they probably deserve their own post. So here you go:
Update: I posted a comment on his blog (and you can, too!):
Robert Rummel-Hudson says:November 19, 2009 at 10:56 pmThe thing is, and I suspect you are fully aware of this, parents of kids with disabilities aren’t offended because of your conservative positions. We’re offended, deeply offended, because you have taken our children’s plights, their very LIVES, and you have turned them into talking points. You’ve politicized the most personal and difficult decision a family can face, all in the service of a cheap shot.Here’s a secret for you, although if you had any experience with or sensitivity toward children with disabilities , it wouldn’t be a secret at all. Most of us who are raising children with disabilities don’t hate Sarah Palin, no matter how liberal our politics might be. We may hate her politics, but she’s part of our club. It’s a club none of us ever asked to join, and it’s a club with a lifetime membership. And for Sarah Palin, as with the rest of us in that club, the politics of disability will be personal for her.As a non-member of our club, please do us the courtesy of politicizing your own children and leave ours alone. They have enough to worry about as it is.– Robert R-H
Update to the update: A very interesting, very intelligent comment was left on Mister Goldberg's blog that you definitely have to read. It presents, among other thoughtful points, a simple math question.
If, as reported by King's College in London, roughly 90% of fetuses diagnosed with Down Syndrome in utero are aborted, and if Down Syndrome is the result of a genetic defect that does not affect any one particular ethnic or demographic group more than any other, then clearly, liberals aren't the only parents making the difficult and heartbreaking choice to have abortions when faced with the prospect of having a child with Down Syndrome. More to the point, there are families, a LOT of them, who consider themselves to be religious, and who identify as Pro-Life, who are nevertheless making a very tough and very personal decision, and they aren't basing it on politics.
Bernie Goldberg, I hope you will consider the possibility that this decision might just be more complicated than you are allowing in your idiotic Fox News sound bite. It might be time for you to apologize for what was, upon further reflection, a deeply stupid comment.
Because I am rather fond of oxygen, however, I won't be holding my breath.
Update cubed: Bernie has issued a statement about his remarks. Buried deep within his post, near the end, is something like an apology:
As for Palin’s decision not to abort her baby with Down Syndrome: Women and their husbands should do whatever they think is best in those circumstances. I have no say in those matters and I would never try to influence someone’s decision in that area. It’s simply, and obviously, none of my business. But I am asking this: Who is more likely to have the baby with Down Sydrome, a pro-choice woman or a pro-life woman? A woman who isn’t religious or one who is? A woman who believes a life – even a life of a fetus – is sacred, or one who doesn’t? I know there are many who will disagree, but I think it’s a safe bet that the pro-life, religious woman who believes in the sanctity of life is more likely to go continue her pregnancy (even as many who fit that description will abort a fetus with Down Syndrome).
That’s all I was trying to say. I never thought I was “politicizing” anyone’s children or anyone’s pain. If I did that, my sincere apologies to one and all. But I still believe many elite liberals hate Sarah Palin for a whole bunch of reasons that have little to do with how she would vote on this issue or that — or even, as they often claim, because they don’t think she’s that smart, There are lots of lbierals who aren’t “that smart” — and they don’t seem to trouble their fellow libs all that much.
Bernie Goldberg's career as an author and a talking head is entirely, completely, 100% based on his ability to politicize every issue that he touches and to demonize and dehumanize people whose political beliefs differ from his own. If he admits that he crossed a line and that some of the heartbreaking, grey-area moral questions faced by families like ours can and should transcend red/blue politics, then he weakens his brand. I suspect, therefore, that this is as good as we're likely to get.
So thanks, Bernie. You're a peach.
A Message for Bernie Goldberg
I'm going to start off by saying that I had no idea who Bernie Goldberg was before this. A few minutes on Wikipedia and his own website told me plenty, that he's got a snappy suit with a nice tie, and that he's a conservative writer with a penchant for hyperbolic book titles. And that's fine, really. There are plenty of conservative writers whom I've admired in the past. (Well, "plenty" is perhaps pushing it.) I realize that sounds dangerously close to "some of my best friends are black", but it is what it is. In my own writing, I try to be fair and I try not to be boring. (It's harder than it sounds.) Follow those two rules and I don't care what your politics are.I also never watch Fox News (see above re: fair and not boring), so I probably would have missed Bernie Goldberg's comments if not for Jon Stewart last night. The topic was Sarah Palin, or more precisely the media reaction to Sarah Palin. The part that jumped out at me came at about 6:15 in the show:
| The Daily Show With Jon Stewart | Mon - Thurs 11p / 10c | |||
| Daily Show: The Rogue Warrior | ||||
| ||||
If you don't feel like sitting through that, here's the money quote from Mister Goldberg:
"She [Palin] has five kids. Liberals don't have five kids. One of them has Down Syndrome. Liberals certainly don't allow THAT to happen."
Okay.
So let me strip this of politics for a moment, because I find it equally distasteful when people of any political stripe do this, and I try (with admittedly varying degrees of success, I'm sure, so call me a hypocrite if you like) to avoid doing it myself. But let me just state something that would seem to be torn right from the pages of The Encyclopedia of No Shit.
Families of kids with disabilities are not here to serve as your political talking points.
Whether or not you are a good parent to a child with a disability has nothing to do with your politics. Conservatives have broken children, liberals have broken children, and we all do the best that we can.
Conservative politicians say stupid things ("How does special education, $6 billion dollars, stimulate the economy?" - Sen. John Kyl), and so do liberals (President Obama's idiotic joke about the Special Olympics). If there's one thing I think we can all agree on, it's that neither party has been particularly sensitive to the needs of the disability community, not when it comes to actually doing something besides talking pretty. If you are in public office and your last name isn't "Kennedy", chances are, you haven't done enough to help these kids.
Perhaps I'm just not looking hard enough, but I can't find any information online that suggests that Bernie Goldberg has any particular expertise regarding children with disabilities. I felt pretty confident, therefore, in sending a message to Bernie via Twitter, one that I am absolutely 100% certain will fall on deaf ears.
"Please politicize your own kids, not ours."
Ass.
June 24, 2009
It's time for my stories
Schuyler is taking a summer school class, one that deals specifically with reading. Yesterday she brought home a little story book she'd been assigned, and she excitedly read the first story to me. I was so pleased with how well she did that I set up the camera and had her go through it again.
This will give you another opportunity to observe her verbal speech, along with the actual words that she's reading for comparison. Mostly, though, I just wanted to let her show off a little. Reading is a hard skill for nonverbal kids to learn, and I think she's kicking it old skool.
By the way, the story kind of sucks. (SPOILER ALERT) Hamsters are just about the slowest, laziest animals on earth shy of a sloth, and even sloths can climb trees. Well, what are you gonna do?
This will give you another opportunity to observe her verbal speech, along with the actual words that she's reading for comparison. Mostly, though, I just wanted to let her show off a little. Reading is a hard skill for nonverbal kids to learn, and I think she's kicking it old skool.
By the way, the story kind of sucks. (SPOILER ALERT) Hamsters are just about the slowest, laziest animals on earth shy of a sloth, and even sloths can climb trees. Well, what are you gonna do?
June 12, 2009
On the radio
Julie shot some video while I was being interviewed on a local Christian radio show. Just for fun.
June 9, 2009
Storyteller
Today, as we drove home from work, where Schuyler spent the afternoon with me, I asked her what she wanted to listen to on my iPod. She loves the music from Coraline and asked for that, and as the music played, she began telling me the story of the movie. She didn't use her device; her thoughts were coming fast and furious, and so for the next few minutes, I was treated to her retelling of the story, with wild gestures and lots of pantomime, and very little intelligible speech.
When we got home, I asked her to tell me the story again for the camera, and she gave me a much-shortened version.
In the past, I've posted video of Schuyler in which a lot of you said "Oh, I can understand her just fine!" The reality of Schuyler's speech, however, is that removed from predictable context, it becomes much more challenging. I will say that in this video, I can understand more than I can't, and I'm sure Julie would be able to as well. But this will give you a more accurate picture of how she speaks.
And how much fun she is, too.
When we got home, I asked her to tell me the story again for the camera, and she gave me a much-shortened version.
In the past, I've posted video of Schuyler in which a lot of you said "Oh, I can understand her just fine!" The reality of Schuyler's speech, however, is that removed from predictable context, it becomes much more challenging. I will say that in this video, I can understand more than I can't, and I'm sure Julie would be able to as well. But this will give you a more accurate picture of how she speaks.
And how much fun she is, too.
June 1, 2009
Sponsored Silence and the Big Box of Words
This video was put together by the Ohio Speech-Language-Hearing Association and the Cincinnati Children's Hospital Medical Center to promote awareness of augmentative communication. The 2008 Sponsored Silence Event was made possible in part by support from Cincinnati Children's, and by DynaVox and the Prentke Romich Company, the two industry leaders in AAC speech technology.
On a personal note, I really hope you'll set aside ten minutes of your day and watch this. I've seen a lot of presentations like this, but for some reason this one reached me in a deeper place. Which is my way of saying that I sat here like a weepy little girl when I watched this. I don't know, maybe I have Issues.
In the next few weeks, I'm planning on putting together a video project similar to what Nancy Zimpher, President of the University of Cincinnati, discusses in the video. Will you watch because you want to learn more about AAC, or do you simply want to watch me look like a tremendous dumbass? I think there are possibilities either way.
May 26, 2009
Pinkessa and the Purple Cow
A short video of Schuyler using her device at dinner. Nothing earth-shattering, just a glimpse at how she uses Pinkessa in a normal dinner setting.
May 25, 2009
Memorial Day, 2009
I have no idea who put this together, but I'm glad they did. When I think of Memorial Day, I don't think of flags and pretty flowers, or speeches and justifications. I think of this piece of music. This is the "Libera me", the final movement of Benjamin Britten's War Requiem.
Libera me, Domine, de morte aeterna,
in die illa tremenda:
Quando coeli movendi sunt et terra:
Dum veneris judicare saeculum per ignem
Tremens factus sum ego, et timeo
dum discussio venerit, atque ventura ira.
Libera me, Domine, de morte aeterna.
Quando coeli movendi sunt i terra.
Dies illa, dies irae, calamitatis
et miseriae, dies magna et amara valde.
Libera me, Domine.
(Deliver me, O Lord, from eternal death
in that awful day
when the heavens and earth shall be shaken
when Thou shalt come to judge the world by fire.
I am seized with fear and trembling,
until the trial shall be at hand and the wrath to come.
Deliver me, O Lord, from eternal death.
When the heavens and earth shall be shaken.
That day, that day of wrath, of calamity
and misery, a great day and exceeding bitter.
Deliver me, O Lord.)
-----
It seemed that out of battle I escaped
Down some profound dull tunnel, long since scooped
Through granites which titanic wars had groined.
Yet also there encumbered sleepers groaned,
Too fast in thought or death to be bestirred.
Then, as I probed them, one sprang up, and stared
With piteous recognition in fixed eyes,
Lifting distressful hands as if to bless.
And no guns thumped, or down the flues made moan.
"Strange friend," I said, "here is no cause to mourn."
"None", said the other, "save the undone years,
The hopelessness. Whatever hope is yours,
Was my life also; I went hunting wild
After the wildest beauty in the world,
For by my glee might many men have laughed,
And of my weeping something had been left,
Which must die now. I mean the truth untold,
The pity of war, the pity war distilled.
Now men will go content with what we spoiled.
Or, discontent, boil bloody, and be spilled.
They will be swift with swiftness of the tigress,
None will break ranks, though nations trek from progress.
Miss we the march of this retreating world
Into vain citadels that are not walled.
Then, when much blood had clogged their chariot-wheels
I would go up and wash them from sweet wells,
Even from wells we sunk too deep for war,
Even the sweetest wells that ever were.
I am the enemy you killed, my friend.
I knew you in this dark; for so you frowned
Yesterday through me as you jabbed and killed.
I parried; but my hands were loath and cold.
Let us sleep now...
("Strange Meeting" - Wilfred Owen, 1893-1918)
-----
In paridisum deducant te Angeli;
in tuo adventu suscipiant te Martyres,
et perducant te in civitatem sanctam
Jerusalem. Chorus Angelorum te suscipiat,
et cum Lazaro quondam paupere aeternam
habeas requiem.
Requiem aeternam dona eis, Domine:
et lux perpetua luceat eis.
Requiescant in pace. Amen.
(Into Paradise may the Angels lead thee:
at thy coming may the Martyrs receive thee,
and bring thee into the holy city
Jerusalem. May the Choir of Angels receive thee
and with Lazarus, once poor,
may thou have eternal rest.
Lord, grant them eternal rest,
and let the perpetual light shine upon them.
Let them rest in peace. Amen.)
Libera me, Domine, de morte aeterna,
in die illa tremenda:
Quando coeli movendi sunt et terra:
Dum veneris judicare saeculum per ignem
Tremens factus sum ego, et timeo
dum discussio venerit, atque ventura ira.
Libera me, Domine, de morte aeterna.
Quando coeli movendi sunt i terra.
Dies illa, dies irae, calamitatis
et miseriae, dies magna et amara valde.
Libera me, Domine.
(Deliver me, O Lord, from eternal death
in that awful day
when the heavens and earth shall be shaken
when Thou shalt come to judge the world by fire.
I am seized with fear and trembling,
until the trial shall be at hand and the wrath to come.
Deliver me, O Lord, from eternal death.
When the heavens and earth shall be shaken.
That day, that day of wrath, of calamity
and misery, a great day and exceeding bitter.
Deliver me, O Lord.)
-----
It seemed that out of battle I escaped
Down some profound dull tunnel, long since scooped
Through granites which titanic wars had groined.
Yet also there encumbered sleepers groaned,
Too fast in thought or death to be bestirred.
Then, as I probed them, one sprang up, and stared
With piteous recognition in fixed eyes,
Lifting distressful hands as if to bless.
And no guns thumped, or down the flues made moan.
"Strange friend," I said, "here is no cause to mourn."
"None", said the other, "save the undone years,
The hopelessness. Whatever hope is yours,
Was my life also; I went hunting wild
After the wildest beauty in the world,
For by my glee might many men have laughed,
And of my weeping something had been left,
Which must die now. I mean the truth untold,
The pity of war, the pity war distilled.
Now men will go content with what we spoiled.
Or, discontent, boil bloody, and be spilled.
They will be swift with swiftness of the tigress,
None will break ranks, though nations trek from progress.
Miss we the march of this retreating world
Into vain citadels that are not walled.
Then, when much blood had clogged their chariot-wheels
I would go up and wash them from sweet wells,
Even from wells we sunk too deep for war,
Even the sweetest wells that ever were.
I am the enemy you killed, my friend.
I knew you in this dark; for so you frowned
Yesterday through me as you jabbed and killed.
I parried; but my hands were loath and cold.
Let us sleep now...
("Strange Meeting" - Wilfred Owen, 1893-1918)
-----
In paridisum deducant te Angeli;
in tuo adventu suscipiant te Martyres,
et perducant te in civitatem sanctam
Jerusalem. Chorus Angelorum te suscipiat,
et cum Lazaro quondam paupere aeternam
habeas requiem.
Requiem aeternam dona eis, Domine:
et lux perpetua luceat eis.
Requiescant in pace. Amen.
(Into Paradise may the Angels lead thee:
at thy coming may the Martyrs receive thee,
and bring thee into the holy city
Jerusalem. May the Choir of Angels receive thee
and with Lazarus, once poor,
may thou have eternal rest.
Lord, grant them eternal rest,
and let the perpetual light shine upon them.
Let them rest in peace. Amen.)
April 8, 2009
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.)
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.)
March 26, 2009
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.
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.
March 13, 2009
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.
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.
"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.
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.
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 )
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