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.
March 31, 2009
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 25, 2009
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.
March 21, 2009
Of Loopholes and Boxes of Pink
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 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.
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.
March 20, 2009
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:
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.
- 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.
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.
March 17, 2009
Approved.
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.
Besides, the new one comes in pink. God help us all.
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 )
March 10, 2009
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.
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.
March 3, 2009
Ambush my heart
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.
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.
March 1, 2009
Reality Check
As soon as I posted video of Schuyler communicating, the comments began. There were a lot of them saying something similar.
"I thought not only the 'good morning' but the 'what's that?' and the 'I want that' were pretty easily understood."
"Yes - I came here to comment on how 'good morning', 'what's that?' and 'I want that' were all perfectly clear, at least through that recording and the medium of the internet."
"Her speech was clearer than I expected, too, especially considering she had just woken up. I heard the 'Good morning,' 'What's that,' 'I want that' and I thought she said 'I fell on the floor.'"
"That 'good morning' sounded clearer than I sound when someone wakes me up!"
"She was pretty clear. I understood her."
"Like everyone says, those phrases were very clear!"
"Extremely clear AND right when she was waking up!"
"I could understand everything."
"Great job Schuyler... I can understand you just fine..."
"She speaks a lot more clearly than I imagined she did - I, too, can understand most of what she says."
I knew what people were saying, and I appreciated the sentiments behind the statements, and also the sort of literal truth of what they were saying. Still, at one point, I tried to moderate the tone a little with a "reality check" observation:
But I knew it was only a matter of time before someone said it:
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:
And Karen is even more direct:
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.
"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?"They both understand perfectly. They are both absolutely one hundred percent correct.
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.
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.
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