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.
77 comments:
I was so excited to see this, but it says the video is no longer available?
I love the snorts at the end. ^_^
This is so fantastic. I love her face and her gasp when she opens the box.
It's so cool to see her this excited.
I see what you mean about it not looking very medical. The pink helps with that :) Heck, *I* almost want one, it's so cool looking!
It said the video wasn't available but I reloaded the page and it was fine.
This video made me smile so much my cheeks hurt!
I'm so happy for Schuyler. I can't wait to see what she can do with the new BBoW when it's fully programed and hers.
I cannot believe how big Schuyler is!! She's so beautiful. What a fun video! Hope the transition goes smoothly!
Thanks for sharing this! It's so neat to see this new device and even better, we get some goofy Schuyler in there too :) She's growing up so fast--I liked how she tied her jacket around her waist :)
So what's the programming? Is it just featuring on the screen some common phrases she might use, or will it eventually use her own voice? Anyway, great video. Happiness is fun to watch.
"I'm not a monkey!" Love it!
Her new name is Snorty McSnorterson. :D
I get the "no longer available" message too,
repeatedly.
Got to put some cool tunes on that device
That's awesome that you got the first moments on film. Glad she's so excited.
Just curious - you said the box hadn't been programmed yet, which I assume means that you hadn't recorded anything on it. So how does it know how to pronounce Schuyler's name? I get that a computer could get Max right just based on the letters, but Schuyler, as you've pointed out in the past, is tricky even for humans.
So what's the programming? Is it just featuring on the screen some common phrases she might use, or will it eventually use her own voice?
Her own voice? I'm not sure I understand what you mean. By "her programming", I mean her specific information in the pre-set phrases like the ones you hear on the video ("My name is...", etc.), plus the icons and whatnot that have been created for her, with her friends and family and such. She also has lots of buttons and words that we've added over the years, as well as specific pages created for her school work. So perhaps "programming" is a misleading word. "Personalization" is probably more accurate.
And yeah, it just knows how to say her name on its own. It can't pronounce "enchilada", but it knows "Schuyler".
Great video! Thanks for sharing. This may be a "duh" question, but I presume the BBoW comes in non-English versions? Would Schuyler ever take a foreign language in school and how would that work with her BBoW? (Your "enchilada" comment made me curious).
New features like email, print, and scan in the new BBoW make me think Schuyler may have a whole new world opening up to her soon - the Interwebs. Can't wait to see it all happen. Kudos to you, Schuyler and Julie!
-Sarah
Hooray! Thank you for sharing this with us. The pink is awesome. Bravo to PRC.
"I am not a monkey!"
I love it. I also get the impression that she thinks it's kinda cool. :)
For a nonverbal kid, she says "This is so cool!" pretty damn clearly.
Multiple times, too :)
I'm also impressed that it knows that S C H U L Y E R sounds like Skyler. Maybe she's so important now because of your blog and book that all new Big Boxes of Words have that built in?
This may be a "duh" question, but I presume the BBoW comes in non-English versions?
That's a good question. The problem is that the Unity language (which is what drives PRC devices and sets them apart from other companies like DynaVox) is built around language structure, not just the words, and not every language is structured in the same way. So it goes beyond just translating the vocabulary. But I think it's in development. I should ask someone from PRC.
New features like email, print, and scan in the new BBoW make me think Schuyler may have a whole new world opening up to her soon - the Interwebs.
Actually, I don't think she'll actually use those features on the device, since she's ambulatory and is capable of doing all that directly on a computer. She's already starting to play with the internet, although only under direct supervision.
I'm also impressed that it knows that S C H U L Y E R sounds like Skyler. Maybe she's so important now because of your blog and book that all new Big Boxes of Words have that built in?
No, it knew it from the very beginning, long before the book was published. It think it's probably because there are a lot of places up north named after American Revolutionary General Schuyler, especially in New York. When we lived in Connecticut, very few people ever got her name wrong.
On the other hand, no one knew how to make enchiladas up there, either.
Internet, hmm? So how soon can I sign up to read Schuyler's inevitable blog?
Oh, and I love that the youtube video is pink as well.
What a glorious thing to watch after I've spent all afternoon filling out Nik's medicaid renewal paperwork. (Talk about depressing!)
I love the "I'm not a monkey!" and the snorts! OMG, she could be part of MY family with those snorts! LOVE IT.
I think I heard her say, "This is awesome," in addition to describing it as being cool.
I love that it doesn't have an institutional look to it, and that she's so excited about it.
I heard "This is awesome" pretty clearly too.
Thanks for sharing this moment.
Fair enough - really, most kids should be monitored as they start exploring the web. I get the feeling, though, that they start accessing stuff (not bad stuff, just stuff) before we think they do. I don't remember where I read this, or if I heard it from someone, but they were mentioning that their three-year-old knew exactly how to navigate to Disney dot com with no help from parents after seeing how to do it twice. This might sound strange, but I'm looking forward to watching Schuyler start to navigate a world where her monster makes virtually zero difference in her navigation of it. I guess I can see the potential for the Internet not saving Schuyler this time, but being another, even bigger part of who she is (to quote you back to yourself) and her figuring out what that means.
Thanks for answering my questions, however nosy or silly they may be :)
Hi Rob, as a fellow musician I am fascinated by how musical Schuyler's speech is. I can see how frustrating communication must be to her at times, but it's amazing how well she's picked up the "music" of speech patterns.
Congrats on getting such a cool upgrade!
2nd try...
Thanks so much for letting us share in the excitement of the new box. I loved watching, listening and I'm still smiling.
What an incredible video. Thank you for sharing that with us. Like Schuyler, my son Evan has a "box of words" and yes it is capable of so much. It has "different" voices to choose from like boy, girl, man, etc. and Schuyler's new box also can add "real/virtual" pictures of mom, dad and anything they choose. It is sophicated enough to "grow" with the child/teen/adult. I was able to hear every word Schuyler said and I'm sure that is a huge contribution to the love and attention she has received from her incredible family. Mr Rummel-Hudson, you and Julie have done a miraculous job in teaching your daughter. Again congratulations on your new box of words and I think her voice is incredible!!!! Now mom and dad get to spend the night awake doing the "programming" because I'm sure Schulyer hates her box out of her sight. Love the pink!
It won't work for me. T_T I tried two different browsers, reloading, and nada...
As far as you and Julie being on your own- ask the PRC rep about seminars. We live in Ohio and will be able to go to Wooster for an all day seminar when my daughter (finally) gets her's. In fact, her rep has already given me a schedule of upcoming training seminars.
Very cool BBOW and I hope Schuyler wears it out!
Oh, I only meant on our own for the immediate future. PRC has been good about training. Also, we'll be at TSHA next week, so I suspect we'll have plenty of big brains to pick.
"I'm not a monkey!"
That was excellent.
Oh my god this was so cool to see, thanks for sharing with us! I heard "I'm not a monkey" clear as day, too.
Heh. I thought "I am not a monkey!" came out clearer than "This is so cool!".
But I have to agree: That is so cool.
Well, she does get a lot of practice saying she's not a monkey.
Ok, I'm just going to say it - I love your kid. She is just so damn cool. She obviously was totally excited to start figuring her new toy out - like when you get a new cell phone and want to sit down and mess with every function and personalize it right away.
Observation about her speech - the comments you made in the previous posts with the videos did ring a little true. I didn't get all of what she was saying when she was walking in because I didn't have anything to frame what I thought she MIGHT be saying. But I did still get some of it, and definitely understood the 'cool' and 'awesome' comments. Hope this new BPBoW opens up even more doors for her.
I think this is my favorite video of her, to be honest. I love seeing her so excited! (And I agree that the coat-tying was cool.)
I was squeaking "This is so cool!" right along with her. :)
Very very cool!
When she first sat down with it she pushed her sleeves up.
Oh, my. The video brought back the exact moment I unwrapped my eighth-birthday present from my grandparents to discover it was the clock radio I so desperately wanted (it was 1965 - the thing was darn near state-of-the-art). She was so clearly thrilled.
Then, it was very cool to see her immediately push up her sleeves and dive right into using it. Her interview of you was just priceless.
I agree with Karen, "I'm not a monkey" was very clear. You obviously give her plenty of opportunity to say that.
And the snorting! Made my day. Thank you.
Okay, I was all goosebumpy watching her open that. I was smiling as big as she was! I got a little sniffly when she was so excited opening the box.
Rob, thank you for this blog. Thanks for sharing the small glimpses into your incredible journey.
I don't even know you guys and yet I am pulling for your family!
Thanks again, man.
WOW, awesome!! Thank you for sharing, loved seeing Schuyler so excited!
Maire
*sigh* no matter how many timesI refresh I still get the unavailable message. Its so great that she's excited about her new device though :)
Not sure why a few people aren't seeing it.
Oh my Lord, I love that child! She is so cool.
Thank you for posting this, Rob.
That was a nice way to start my day! What a treat to see Schuyler's reaction as she opened that box! I hope the new device is everything you hope. Can't wait to hear about how Schuyler uses the new features.
That was GREAT! It was so fun to see her reaction!
I could understand a lot of what she said, even without the BBoW.
Everything she had on the old device will be on the new one, if you just transfer the old device into the new one. All the personalization, pages, and imported pictures will be there also. You will want to do this, to 1-save programming time, and 2-so everything will be exactly where it was before. This way, she can slowly learn to use all the new features, without losing what she already does know.
For a "non verbal" kid she says a LOT of things pretty damn clearly.
I am amazed by how MUCH more clearly she is speaking than the last time or two you video-ed something. She speaks with near perfect inflection and vowels and now some consonants as well. I am blown away. And I am glad she likes the new box so much-it may boost her enthusiasm for being a box user which has sometimes flagged a bit lately, as you have said. What a kid!
saved this post in my reader for last and it was totally worth the wait and my 100% attention.
Last week I had a child with autism come up to me with his box and ask for cheese crackers. How could i say no to something that he obviously took great effort to convey to me?
I bet you can't say no a lot either ;)
Refresh, try a different browser, restart, blah blah blah, no matter what, I can't see the video. Pfft.
Great video, and I've really been enjoying this blog. Have you heard about the Open Source Icon-to-Speech project?
http://www.olpcnews.com/software/applications/free_icon-to-speech_open-source_speech_for_disabled.html
If it takes off, many more kids will have access to something like Schuyler's big box, which would be great.
I also wonder if you've thought about teaching her steno at some point. Right now it's mostly used by stenographers (including ones like me, who transcribe college classes for Deaf and hard-of-hearing students), but I think it's got enormous potential for people with manual dexterity but no speech capabilities. Basically, it allows someone to produce fluent English text at the same rate it would take to speak it -- up to 225 words per minute. Unfortunately it's mostly restricted to proprietary hardware and software at the moment and so it's tremendously expensive to get someone setup with a working system, plus there aren't currently portable stenographic systems that are text-to-speech ready right out of the box. But in the next ten years or so, I see the field really opening up, and if Schuyler becomes frustrated with the limitations icon-based speech, she might prefer a quick syllablic entry system to the painstaking letter-by-letter entry system that qwerty typing requires. But the Big Box is definitely a wonder. Thanks for giving us all the words and videos. You've got quite a kid there.
THANK YOU!That is an adorable daughter you two have. She could do modeling - she a natural
i have it showing as unavailable as well... bummer
WAAAA
"Video is no longer available"
Pinkessa!
Okay, I just tried embedding it again, see if something's different now. If not, I don't know what to tell you. Some people are seeing it and others aren't. I see it just fine.
I can't view the video either. Tried IE7 and Firefox. It's not on your end, Rob. I can't get it to play from the YouTube site either.
She would love the new C8. Much better than the slow Vantage Lite shown here, and it doesn't come with the burden of Minspeak. Check out tobiiati.com for a real device, and really learn the power of computing and AAC.
Well, I'm a huge believer in Minspeak, so we're going to have to agree to disagree. It works fantastically for her, and I think her success speaks for itself, so to speak.
Thanks for sharing, Rob. That video made my day. She is a delight. While I realize that everything I could understand was in context, "I'm not a monkey" was awesome! This device definitely looks less cumbersome than the last...and let's not forget the fact that it's pink. I hope Schuyler continues to love it.
(As an aside, I can see why Schuyler, especially right now, might get frustrated with the device in conversation. Obviously, her brain moves more quickly than her fingers can navigate the BBOW. I hope the new shiny pink gets her really invested.)
The name "Pinkessa" cracked me up. Over the years I've named most of my assistive devices and computers, most notably the wheelchair named The Tank. Pinkessa has such flair!
Rob,
I read and loved the book, but I haven't really kept up with your blog until recently. I'm cuerious though, and wondered if on a normal day at home, does Schuyler use her BBOW or does she just talk to you and Julie verbally? I do remember that she uses some sign language too, so maybe that's added into the mix. Does the BBOW allow her to really describe emotions, frustrations, etc. with much detail? Perhaps those thoughts need to be written or typed at a computer?
It's hard for me to imagine--I'm a professor, and I think best as I talk. I wonder if Schuyler will be a writer like you, working out her thoughts as she writes.
She's so precious. What a beautiful child!
Laura
"Much better than the slow Vantage Lite shown here, and it doesn't come with the burden of Minspeak. Check out tobiiati.com for a real device, and really learn the power of computing and AAC."
I smelled a sales pitch above, and sure enough, according to LinkedIn.com, the poster is the marketing communications manager for the firm. Heehee.
What energy and confidence your Schuyler exudes in that short video! Sometimes a picture really is worth a thousand words.
iPhone to the rescue! People who are unable to view, if you have an iPhone, or know someone who does, the video is viewable on the iPhone.
Thank you for sharing, Rob. So sweet!
What I meant by "her own voice" was the ability to change the voice of the woman who says the words in the machine into Schuyler's voice. All she'll have to do would be to say a syllable or two into a mike in the machine. See, I probably got a little into science fiction there. Or I'm a genius.
Robert, I loved it, and I even showed my husband too. :-) We watched the video farther down on the page too - the one where she's five years old and showing off her skills for those stupid people in the school district. My husband kept saying, "Wow!! She is so SMART! Look at her go!"
So anyway, I'm coming over here to tell you that I've written a review of Schuyler's Monster on my nonfiction book review site. After finishing the book, I of course had to check out your blog, so here I am. Thanks for the fantastic read. :-)
Havs
Schuyler is so cool. :)
Rob, that was just unbelievable to see. And inspiring. I hope Max is able to navigate his speech device like that sometime. And I just love how chatty and expressive Schuyler is. May she use this, as my mother would say, in the best of health. Damn. I hate it when I quote my mother.
I, like the transcriptionist person deeper down in the comments, can't wait till she can use text to communicate vs. icons. Hope she is working hard on keyboarding and using word prediction!
I am so excited for Schuyler! That's so great!!!!!
Pink technology! I love it.
I just found a splendid article about a young man who is autistic, has Down Syndrome, and is nonverbal, using something like the BBoW, and he's been able to open his own business. He's got parents like you, who refused to take the official verdict on him for an answer.
(http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness)
Schuyler has a beautiful voice! I loved getting to hear her talk so much! This device is really awesome, too. It's interesting - I saw a news piece on ALS on the Today show last week and that insurance companies were realizing that AAC devices were medically necessary, etc. Yet schools (I teach special education) don't realize the necessity of them, or when they provide them, provide the dinosaurs and make them so hard to use...anyway. With kids being so used to technology today, it seems that the computer- based devices would make more sense to use. It's frustrating. I know you all fought long and hard for Schuyler, and I thought of you when I heard that on the show.
Schuyler seemed to be pretty understandable, even to readers who aren't used to hearing her. Is she getting more intelligible with age, or is that just luck/people trying to understand her?
I want a cool pink BBoW...
SHE is so cool! Thank you for making me smile tonight :) Like everyone else here, I love seeing your beautiful monkey so happy.
I've heard about your blog before and now I had the time to read it. I'm so glad I did. I think all of this is amazing. I'm so happy that Schuyler has a pink BBoW and that it makes her that happy.
Keep on doing what you're doing:-)
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