May 19, 2006

Big Box of Words


Schuyler talks
Originally uploaded by Citizen Rob.
As promised, it's time for a little primer on Schuyler's Big Box of Words. ("Little" obviously being a relative term.)

The BBoW is actually a Prentke Romich Vantage Plus augmentative alternative communication device. The BBoW is smaller in screen area than a laptop but is in a heavy, durable plastic case that can deal with the kind of gentle, loving care that a six year-old is known for. It uses an interactive dynamic display that responds to touch, even when coated with mac and cheese. The device weighs about four pounds and has a clear cover (with lots of stickers) to protect its screen, as well as a shoulder strap. Because the screen is very bright and is in use for most of the day, the BBoW requires overnight recharging most evenings, after Schuyler goes to bed.

The BBoW is programmed using a communication language called Unity. It has an expandable vocabulary of about three thousand words and can be programmed to function at a number of different levels, from a remedial level for beginners and profoundly impaired kids to an advanced level suitable for adults. The system uses a combination of pictures and words to build sentences and give choices and ultimately teach language. Certain choices prompt the device to change the menu options to make communication easier and show the user how language works smoothly.

For example, if Schuyler wanted to say that she wants to have spaghetti for dinner, she would hit a button with a little girl on it for "I" (rather than ones for "you", "he", etc.) and then a little icon with a criminal in stripey clothes ("want"; get it?), followed by a button with the word "to" and then a button with a picture of an apple. As she does so, a screen at the top of the BBoW fills in the words as she selects them. "I want to eat..."

When she hits the apple button, the screen changes. The top row now shows a list of meal types. She selects "dinner" and it changes again, showing different types of dinner menus. She selects "Italian" and then, from the next screen, spaghetti. When she's got her sentence constructed, she touches the area at the top of the screen where the string of words has been forming, and the device speaks the sentence for her.

"I want to eat spaghetti."

The voice that speaks is computerized and sounds more or less like a child. One complaint that I have with the device is that even though I assume most of the people who use them are fairly young, there aren't that many child voices available, and so I think every kid in Schuyler's class sounds the same, using the "Kit" voice. Even among people using the same voice, however, there are programmable variations in pitch and variance and speed that can personalize the voice further. Our original PRC rep told me that she can tell which of her clients is calling her on the phone just from these settings.

Let's discuss Schuyler's school. On another blog, some swell anonymous person descended from the upper branches of the Assmonkey Forest long enough to suggest that we must have pulled a fast one on the world since we raised all that money to buy Schuyler a device when she attends a school district that will provide the devices for its students.

Two points about that. First of all, when Schuyler first began using the BBoW, we didn't live in North Dallas. We lived near Austin, and the small school district where Schuyler attended was unwilling to help purchase the device that we considered appropriate for Schuyler. They said she'd never be capable of using it. I'd like to say she proved them wrong when we moved to North Dallas and placed her in a proper learning environment, but she was using it far beyond what her school thought possible a few weeks after she started using it. We had no idea that the local schools had a program for device users at that time. (There were only four in the country, although I'll bet there are more now.) It was several months later that we found out about the program and decided to risk everything and move to North Dallas so that Schuyler could attend her Box Class. By the time she started in that class, she had already been using her BBoW for about four months.

Secondly, if we ever decide to leave North Dallas and the school district here, she won't lose her BBoW. That's unlikely, but not impossible; today I found out from a friend who works as a nanny here that one of her charges, a four year-old, was pulled from her pre-school class because other four and five year-olds were making death threats to her. Apparently that's not as rare as you might expect. North Dallas has a reputation for having the best schools in Texas, but it is also infamous in this state for having horrible, nasty children. The Box Class is supposed to be a three-year program, after which time Schuyler will hopefully be able to attend mostly mainstream classes. We'd like her to stay in the North Dallas schools, but not if she has to make a shiv in shop class just to protect herself. I thought all this consideration was far far in the future until I was told about these four year-old kids threatening to cut another kid's throat, "and not pretend". Seriously.

So Schuyler's device is her own. She takes it most places, either on her shoulder or in her backpack. (Or on the shoulder of one of her parents if she can scam us into carrying it for her.) She does not carry it on the playground or to the swimming pool, places like that where it could be damaged. She also doesn't use it in bright sunlight where the screen is impossible to read. She takes it almost everywhere but won't keep it out to use if we're at a movie, for example. She uses it to order her own food at restaurants, something we insist on now even though it makes some waiters and waitresses uncomfortable. Fuck 'em.

In addition to the picture- and word-guided sentence construction, Schuyler uses her device to practice her spelling, which she loves to do, and also numbers and math. She was showing off her addition skills the other night at dinner, for example. She sees words and spells them out on a section of the BBoW that gives her a screen with the alphabet on which she can spell whatever she likes. She loves spelling things out and will often use this page to say things that she can just as easily find pictures for on other parts of the device.

She explores on her device constantly. She found a page with body parts one day while we were all driving somewhere once. Nothing like hearing the word "penis" come floating up from the back seat out of nowhere. She also found the word "yikes" on the BBoW, which was sort of a random thing to hear her say. To her credit, she used it properly.

Someone left a comment once suggesting that we should refer to it as her "voice" or "words" rather than her device. Both we and Schuyler's teachers refer to the BBoW as Schuyler's device, not her voice. Schuyler uses several different forms of communication, including the BBoW, sign language and even some limited verbal communication, and she understands the difference between them all. No baby talk is required.

How smart is Schuyler? No one knows. It is almost impossible to measure the IQ of a non-verbal child, and even testing by a skilled pediatric psychiatrist is a very subjective affair that we don't feel compelled to put her through at this time. She is clearly behind other kids her age but in the year that she's had the device, she's made good progress. I am convinced that she is of normal intelligence, and as she finds her voice, she'll continue to catch up.

I also predict that she'll eventually learn to swear on the BBoW, probably sooner than her teachers will like. Well, I can dream my little dream.

25 comments:

  1. Anonymous1:07 AM

    Can we see video of the spelling? I thought the Wanting of the Grapes in the beginning was awesome - I love when kids are excited about new skills, be it walking or tumbling or needlepoint or spelling dirty words.

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  2. Haha... Yeah I think she will be spelling bad words sooner, rather than later. I can just imagine her riding in a car or sitting in class spelling out 'penis' for the teacher, or swearing up a storm and laughing. I love to hear about her achievements and sometimes it makes me wonder if I should be working as hard as she is to achieve. Great entry to start the day with right before an exam!!! Thanks! :)

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  3. Wow, that was so interesting. Thanks for sharing.

    I'm glad you don't call that device her voice.

    That's really cool....Schuyler definitely has her own voice as you are discovering everyday through her communication with you: written, verbal and non-verbal.

    I bet its so fun watching her blossom everyday.

    And how great that you expect her to be "normal" (what's that anyway...) because she is normal in so many ways, and have her order at restaraunts. Every good parent (including myself - ha!) has their child do so as early as they can.

    f@#$ those impatient people who mind waiting..........

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  4. Anonymous3:35 AM

    I think it's great you are exposing people to augmentative communication, which may seem so simple and everyday to you, but probably very foreign to them.

    I don't understand why you must explain and defend yourself constantly to people about the money you raised for your daughter. I understand you feel compelled to explain I mean, but I don't get why you are expected to feel some kind of guilt about it.

    I was in a very lonely and difficult situation with my disabled little boy. He is much more disabled in the sense that he can't walk or do much at all for himself, and people always either turned their heads, expressed much too much sympathy and then turned away, or attempted to make me feel guilty in some way. It was rare to find someone genuine. In the end, being a single mom with 2 children (one "normal"), and after being forced into poverty since no daycare would take my 9 year old child still drooling and in diapers, I gave him up to a relative to raise. I had very little support and I felt so alone and ANGRY about the whole situation.

    I promised myself, should I ever be in a position to make life just a little bit easier for someone else in a similar world, I would do whatever I could for those people.
    You were one of those families I chose to give a little to, no strings attached. I hope I, and many others, made your life, and in the long run your daughter's life, a little easier.

    Keep up the great job you're doing, Rob and Julie!

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  5. Ever since I've been reading your blog I have been impressed with her BBOW and very glad that such a device is available.

    That's great she orders her own dinner, way to go sweet girl.

    I'm LOL at the swear word comment.

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  6. I am certain that your daughter is much smarter than you will ever know. As you said, it is hard to measure a non-verbal child.

    However, a six year old child using two or three forms of communication as complex as sign language, the BBoW, etc is definitely ahead of the game. I think that ALL children her age should learn sign language.

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  7. Your little girl is an inspiration and probably alot smarter then most will give her credit for.

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  8. Anonymous6:31 AM

    Thanks for the BBoW primer. I was curious but never asked, because I figured you'd share if you wanted.

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  9. Thanks, Rob.

    Kiss the girls!

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  10. Oh, it is so wonderfully satisfying to hear that she's spelling her own words and doing math and all kinds of things that mean that the people who said she wouldn't be able to get much use out of the device were SO wrong. It quiets my vindictive side.

    She's such an amazing kid, and I'm so happy (in a strange internet I don't actually know y'all kind of way) that she has the big box of words.

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  11. Anonymous9:56 AM

    Fascinating, Rob. I've "known" Schuyler since before she was born and am always happy to hear and am amazed by her accomplishments.

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  12. Anonymous9:59 AM

    I'd wondered if she could use it in bright daylight, I know I can't see my laptop well.
    So I'm taking it that if she spells a word, it will sound it out? Like if she learns words in spanish, which I'm sure she will in TX, will it say the word with an accent, or does it have other languages programed in too?
    Like a lawyer, maybe you should call it her mouthpiece? LOL
    Donnathedead

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  13. Anonymous10:58 AM

    Thanks for this entry Rob, it's both interesting and inspirational.

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  14. Anonymous11:51 AM

    Thanks for this. I'd let her use it whenever and wherever she wanted to use it and to hell with everyone else. If people cannot be understanding and show compassion...then you're right, fuck them.

    Does Schuyler know a lot of sign language or just a few words? Is she being taught that in school as well?

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  15. Wow- I wouldn't have thought a six-year-old could use something that complicated! But then, it sounds like the box itself helps kids over the learning curve. Something like that might even be useful as a learning tool for kids who aren't impaired at all! Oh, wait, the Leap Frog people got there already. But it's still pretty cool that the device seems to teach it's own use.

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  16. I was not one of the ones who desperately wanted to know about the BBoW, but that is cool to know.

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  17. Anonymous1:43 PM

    Thank you for the post about the box. I used to go to school with a girl who had cerebral palsy and she used a device similar to Schuyler's to talk.

    I wonder when Schuyler gets older if she will use a different box so she can just type in what she wants to say and the machine will say it for her.

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  18. Anonymous1:44 PM

    I know that everything is not perfect and rosy and swell, but I have to say, when I think back to the posts you wrote when Schuyler got her CBPS diagnosis, I didn't know that you and she would ever get this far.
    It's a testament to you and Julie as parents and to Schuler's irrepresible will to be who she is.
    You guys are truly amazing.

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  19. Anonymous5:25 PM

    I love the story of the word "penis" floating up into the car. Potty-type talk exploration and right on schedule! How proud you must be.(insert big grin here) Seriously, that story really and truly is a sign of how far she has come and is coming. (But then I'm the mother who was thrilled when her older daughter learned to lie at a ripe old age (like 8 or so) because it meant she had finally grasped that I was a different entity than she was--and that child is in college now and doing well.)

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  20. Anonymous10:30 PM

    Thanks for writing about her device, enjoyed this entry, but, then again, I enjoy all of your entries!

    When you had your blood sugar episode that caused you to go on double medication, was it a high glucose or low one? I'm guessing high. My son has diabetes and I'm just curious. I'm always freaked out over the low episodes, worry that he will fall into a coma!

    Vix
    www.geocities.com/vixenaccount/blog.html

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  21. Neat! I feel almost guilty about being so curious about the BBoW, but heck, I'm a nerd. I'd be just as curious if you started writing about one of those awesome little computers that sits in your car and tells you where to go. :-)

    It's so cool that she's spelling out words on the device!! I'm trying to think back to when I was learning reading/spelling, and wow, she's six?? That sounds awfully impressive to me. I'm also wondering if she's going to "graduate" to a device at some point where she'd just type everything in herself. Or start typing in the computer!

    My bet is that it's just a matter of time before we're all reading Schuyler's entries about whatever weird things her daddy did today. :-D

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  22. Anonymous4:53 PM

    Heheeee... "Penis" Yes, right on schedule. A little ahead of schedule, in fact. Haven't heard that gem from my 8 year old niece yet (and since my hubby and I are her two primary negative influences, if she's said it I expect it would have been with us present!) Hell, at 6 my niece threw me aback by telling me it was apparently "my turn" to have a baby. I made this mistake of asking her where in the world I would get a baby, thinking that would end the discussion. BIG mistake!

    Schuyler rocks, and your writing about her really captures the essence of her soul and spirit. If I were Schuyler's age, she would SO be the girl in class I'd want to be around. Genuine, happy but introspective, intriguing, wise beyond her years and non-judgmental (except of assmonkeys that deserve to have their butts kicked.)

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  23. Anonymous10:18 AM

    I hope you get her some good swear words programmed into the box so that she can continue to be sassy and subversive. I just found the blog and am reading from the beginning. Is there anyplace that the older archives can be read - not just the excerpts on darntootin, or do we have to wait for the book?

    You have a beautiful daughter. She *does* look like Drew Barrymore, and now I'm going to have to let my kids go punk with the hair at that age because it's sooooooooooo cool!

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  24. Well, for now you can go to the Darn Tootin archives, but be aware that as soon as my manuscript gets turned in, all my old stuff will most likely disappear.

    And thanks!

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  25. I'm three years behind again, but I'm enjoying reading the old posts.
    I'm glad you wrote about the Box, because I'm fascinated with linguistics, communication, and technology, as well as child development, and here they all are in one place.

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