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."
That was an awesome story, Schuyler! Thanks for sharing it.:)
ReplyDeleteThanks for sharing! I enjoyed the story and all the sock monkeys.
ReplyDelete:-) I like the way Schuyler tells it all with a microphone. :-)
I am praying you got good news from the neurologist.
Carrie T.
I watched this video with great interest. It also made me realize you had your own YouTube channel and I have now watched almost all of your clips. It's amazing to follow Schuyler like that.
ReplyDeleteAs for this story, I am fascinated by how many monsters she has. Really cool, I want them too :-)
What a beautiful (and tall!), fantastic kid you've got. She made me laugh, particularly when you said she had to read the doll's bottom for the name and you got a, "Daddy!!" She's quite the stuffed animal connoisseur.
ReplyDeleteI've how she's just making it up as she goes along--she reminds me so much of my girl when she was 10,down to the "Daddy!" Thanks for sharing!
ReplyDeleteSchuyler has a lot of cool stuffed animals! I liked it when you asked her if her dragon could fly and she said "He's got WINGS!", like "how slow can you be, Dad?" She is so creative. It made me cry a little---thinking how Janey can talk so clearly but doesn't use her voice for anything but very basic requests. Every monster shows itself in such different ways, just like the monster with no legs but arms and the one with no arms but legs.
ReplyDeleteRob, I could actually understand a lot of what Schuyler said. Some of her words are pretty good! This might sound like a dumb or naive question, but would she benefit from speech therapy? Would that help her speak even more clearly?
ReplyDeleteAK Kim
That was wonderful!
ReplyDeleteI am so envious. I wish my child could tell me anything like this. To imagine that all of that could be inside of her and no way to share it with her makes me sad.
But seeing Schuyler tell that story really was very uplifting and I'll keep hoping for our own miracle.
She's actually been receiving speech therapy since she was about three, before she was even diagnosed. That, and the verbal modeling from her speech devices, has made a huge difference. I have video from when she was about five, and there is very little that is comprehensible back then.
ReplyDeleteThank you for telling us your story Schuyler, I do so enjoy a good tale with stuffed animals and your sock monkeys ROCK!
ReplyDeleteI love your typical parent comment toward the beginning Rob, as she is tossing stuffed animals out of the bin 'You know you have to pick those up don't you?' - made me chuckle, as i was thinking the exact same thing in my head.
Your daughter is wonderful.
My daughter loves sock monkey's too! (and Paul Frank monkeys). Can't get enough. Thank you for sharing your story!
ReplyDeleteBest,
Sarah
I especially loved the "OMG Dad!" tones throughout the tape. She is turning into a little preteen:) Thank you so much for sharing!
ReplyDeleteWowza!!! Great story!!!
ReplyDeleteBasically, I'm jealous of the cool toys Schuyler has...
ReplyDeleteIs she still clinically considered non-verbal? Because, I agree, there was a lot there that was pretty intelligible.
ReplyDeleteYeah, she's still classified the same. The problem, which only gets worse as she gets older, is that when she ventures into truly independent expression (as opposed to answering questions, etc.), her speech becomes much harder to follow.
ReplyDeleteShe's so expressive! The more I listened, the more I could understand. I share Cynthia's question. How could she be considered nonverbal?
ReplyDeleteAs I've explained before, her lack of some sounds, particularly most consonants, means that she will probably always be classified as non-verbal. Being able to make herself understood with gestures and with some words that can be sussed out isn't the same as being verbal.
ReplyDeleteI ask you this. If Schuyler were asked to write and deliver a speech, with no cues or clarifications from anyone, and you were to listen to this speech with no contextual clues, would you understand more than just occasional bits and pieces? If people around you only comprehended even 50% of what you said (and I think that's very high for Schuyler, but let's just pretend), would you feel as if you were being understood?
Having said that, Schuyler has made a great deal of progress, due to speech therapy and effective aural modeling with her speech device, and we remain hopeful that she will continue to do so. But she's not there yet, not by a long shot.
I was struck by how lovely her hands are, such long graceful fingers, and how elegantly she uses her hands - almost balletic.
ReplyDelete