June 9, 2009


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.


conuly said...

Yeah, I don't get a word. But I didn't expect to - when I did understand her in other videos I thought it was obvious to everybody that she was saying obvious things in obvious ways with the normal intonation.

I mean, I can sit down and hum the Pledge of Allegiance, but I don't expect Brits to recognize it without the words (even though Americans will) because they lack the context.

Meredith said...

I have the benefits of being a speech pathologist and having seen Coraline, so I THINK I got more than the average listener. I love Schuyler's wonderful dramatic nature and pantomime. From what I've seen I'm assuming that's a natural trait from you and Julie as well as a learned skill for communication.
That movie scared me to death, by the way!

kris said...

Holy crap. She is all arms and legs.

First off, let's just be clear--you have a radiant, amazingly awesome and fun kid there. I know you know this. But it's so abundantly clear watching her and listening to her.

What really struck me (and broke my heart a little more) is that it is clear that Schuyler IS telling a story. She's not just jabbering, she's not just singing or talking to herself...there are words in her brain and they get lost on the way to her mouth. As I've watched your videos of Schuyler using Pinkessa, I've been struck by how labor intensive it is for her to "talk." The BBoW is a gift--it allows us, you, her teachers, etc. to understand her. But when you want to tell a story? You want to do it the way you see here. You don't want to punch a bunch of buttons and search a bunch of screens to find your words. I can see how Pinkessa might frustrate her as much as it liberates her and enables her.

But let's come back to the joy. That's an fantabulous girl you have there. I love the hug. And I definitely got the "I'll see you at home" at the end. I want to hang out with that kid.

Christopher said...

Thank you for sharing. I still did pretty well but you can hear the difference.

Niksmom said...

I didn't understand anything until after she hugged you. I think that put the last bit in context so it was easier.

Still, she is so incredibly animated and vivacious. I wish there were a technology that existed to allow her to harness *that* along with the BBoW. Hell, I wish the technology existed to allow so many o four children to harness those elements. *sigh*

Kelsey said...

I think I understood some parts of it, but only because I know the Coraline story. Even the parts I didn't understand, though, were lovely to listen to because she is such an engaging kid.

A little off-topic, has she seen Mirrormask yet? It's another Gaiman/McKean production that's a little lower budget and a little darker than Coraline, but I bet it'd be right up Schuyler's alley.

Tracey said...

She is gorgeous and wonderful.

Anonymous said...

Schuyler, Thank you for telling the story. Now I want to read the story myself.

Good bye!

Karen said...

She is so beautiful and so dramatic, and clearly she is also so very happy. I got a few of her ideas. Not many words, but definitely some ideas. Does she open up that way often? I'd so much rather listen to her happy ramblings and not catch a word of it than have her clam up and only shrug or nod. Not that neurotypical kids don't shrug or nod, mind you. That's part of those tween/teen years. But it's probably even more tempting for her given how cumbersome the BBoW can be in comparison to what most of us can do.

That's the rub, isn't it? The BBoW is amazing and liberating and wonderful... but not easy. It really is like a wheelchair or leg braces. So much better than not having it, yet so much less than not needing it.

Elizabeth said...

Can she come over and have a playdate with my kids? Honestly, she just seems so adorable. I can see how frustrating, how debilitating that language barrier must be -- but she's on fire, really, with light in her face.

The Dorm Rat said...

Wow. I'm a moderate stutterer myself and I know how hard it can be to talk with that. To get stuck on a word or a sound and to try and force it out.

I can see a struggle there. And I know this will sound mean, but I don't mean to sound mean. Part of me just wonders why she doesn't form her mouth and her tongue into the correct form to make the other sounds. Watching her, it appears to my untrained eye that she isn't and dare I say isn't trying and the part of my that went through stuttering therapy remembers having to work hard to perfect those forms and mouth movements. But I do not have her monster. I can not understand what it is like for her move her mouth, or what amount of control she might or might not.

I do not know, and my ignorance is what leads me to think that occasionally when I watch her. Part of me wants to say "Do this with your mouth.. and we'll all understand you better." But I do not know what she can or can not do. I feel guilty for that, but at the same time.. it helps to bring into perspective "Wow.. this isn't simply.. she honestly can not be understood by the average person."

Seeing and hearing, watching her mouth as she speaks, brings it into perspective. Thank you.

Rob Rummel-Hudson said...

One key is to listen at the end when she's talking about the old house and the new house. When she says "house", she is working her ass off to make that "H", which she first started doing in order to be able to say "Hudson". Her mouth won't form certain consonants, like "S" or "F", so she will exhale hard like she does with "H" in order to make a sound that is close.

It's interesting to me that the mechanics of what she CAN do haven't changed much at all, despite six or seven years of speech therapy, but her ability to hear and approximate as closely as she can is developing rapidly, and with a lot of creativity. I think the BBoW has made that happen, as she works to produce the same sounds that it does.

It's hard to explain how her brain works, and doesn't work, except to say that her mouth simply won't form those sounds, no matter how hard she tries. And it becomes more and more clear as she gets older that she desperately wants her mouth to work.

I suspect/hope that it will improve as she reaches her teens, and despite the mountain of evidence and opinion against the idea, I honestly believe that one day, she will be able to talk. Perhaps not as clearly as the rest of us, but I don't think this is as good as she'll get, not by a long shot.

I don't believe in a whole lot, but I believe in Schuyler. After what I've watched her do, I'd have to be a moron not to.

luxmoores said...

Yup! Definitely puts it in perspective.

Julia said...

I love the mad waving, too - but I was also amusingly reminded, really, when kids tell you about a book or movie they've seen, you have to have seen it to understand even a remote fraction of what they're saying. I've listened to way too many re-tellings from nieces and nephews where I just nodded and smiled and was MADLY confused.

Nicole P said...

Well, having not seen Coraline yet, I know now there's at least one character with very long arms and legs, something goes on with something's eyes, someone has their own house. Also that there's a mom and dad involved somehow (toward the beginning) - I also thought I got the word team.

I think she has the advantage of being a natural-born storyteller, though, who knows how to use her body as part of her narrative. That will do her well as she gets older. I'd also have to agree, that I can only imagine her speech getting better as she grows, learns, and becomes more familiar with the inner-workings of her body and brain.

Anonymous said...

Beautiful Schuyler.


Lauri said...

I just love her energy.

I understood just a little.. Home, Mother, eyes.. but again I just read the book to my daughter and I was familiar with the story.

There is a great illustrated Coraline book by Neil Gaiman/P.Craig Russell.

now after reading the book, my girl and I are eager to see the movie whenever it comes out on dvd.

Keri said...

love how she threw in the sign for 'CAT'. =)

Ellen said...

Rob, I welled up when I saw this video. Both because Schuyler is so expressive and smart and personable, and because I felt I was seeing into the future—I know this is how Max is going to sound. This is sort of how he sounds now, although the words don't tumble out for him like they do for Schuyler. I understood some of what she's saying! I do have trouble understanding Max sometimes, which is frustrating. He's six, though, so he has time. I can only hope he is able to express himself like Schuyler can. Any verbal expression at all seems like a miracle to us, because of the extreme brain damage in the speech area.

Anonymous said...

I used to stutter (quite badly) as well, and this was kind of hard for me to watch to be honest. I felt her.

I did the EXACT same thing with my hands when I was trying to get words out.

btw I don't think my therapy helped me a bit. Eventually (at around 12 or so I think?) my mouth just caught up to my brain, or something.

and now you would never know.

(I hope you can say the previous six words about Schuyler someday.)

Molly C said...

Holy crap the cuteness! She is such a personality. And I understood some, but I work at a special ed summer camp, and some of my boys have impaired speech.

Rob, she is fantastic. Regardless of our ability to understand her, she just seems like a great kid.

Anonymous said...

Sounds a lot like my house..the girls are really quite similar in speech patterns, not a wonder that they are great friends!
Jennifer A.
Cassandra's mom

Anonymous said...

I got a few things, though I don't know anything about the movie. Certainly there was a mom and a dad, and somebody was mean. I can imagine how somebody who knew and loved her would understand more, and somebody who had a shared basis for understanding. Her husband will understand her, no doubt there.

MsJess said...

I must admit I couldn't understand much of what she was saying but I'm glad she loved Coraline. It was easily the best movie I've seen in a while. I bet Schuyler would look awesome with blue hair.

Chris said...

Has anyone sent a link to this video to Neil Gaiman? I bet he'd love it.

Schuyler is an awesome little girl. This really does show how much fun she is!

Anonymous said...

She also signed 'monster' also, and my dd says there was one in the movie.

She is smiled the whole time, its easy to see she's a happy child.

Anonymous said...

Wow, she is such a happy and lovable kid! I understood quite a bit, despite never having heard of Coraline, lol. And the parts I didn't entirely understand I got the general idea from her intonation and expressions.

Anonymous said...

I picked up the following:

something about a monster, a spider, a cat, eyes coming out(?), and a new house and an old house, and her "that's it."

But, I work with children who are primary AAC users and whose speech consists of mostly word approximations, so I've become a pretty good guesser over the years.

I haven't seen Coraline myself, but a quick peek at the trailer says my guesses probably weren't too far off the mark.

Donna said...

Even if you don't understand her, you gotta love her! She's so, animated for lack of a better word. And HAPPY! And sweet, and all the things little girls are. I can't believe how big she has gotten either, freaks me out that I've been seeing her since she was tiny, before you even knew anything was going on with her at all. She's like everyone's baby now....and we are all so proud!

Anonymous said...

She is amazing.

I really used to get frustrated at those that insisted that my daughter' hemi hand would get better with practice and concentration. That it would one day be fine.

I am over that now, and have the nod and smile down pat. If I think that they will listen, I calmly explain that it is a brain thing and not a arm/hand thing. That things may improve, but will never be fine.

Sounds much the same for Schuyler. All we can do is hope and provide the opportunities and tools. They will put them together in their own time, in their own way.

-Kathleen (Becca's mom)

Keri said...

Whether I understand or not is irrelevant. Her story is beautiful cause it is hers.

Jennifer the producer in DC said...

what I continue to be struck by, Rob, is how incredibly musical she is. Clearly she has talent from both her parents :) English isn't a tonal language, but just listen to how this girl pitches words in her sentences. Her sense of phrasing is outstanding.

Unbelievably amazing, what a treat to have her tell us a story.

(an early happy half-birthday to Schuyler) :)

Greet said...

For everyone, but especially Schuyler - Neil Gaiman posted the link to this post on his blog.

The Dorm Rat said...

I can see the work to form the H sound, and I understand it exactly. I do something very similiar when I'm having a bad moment with stuttering. I'll put an H-sound, a Heh like exhale sound at the beginning of my words something to ease my way into saying them. It's a bad crutch and it's one of my worst habits when I'm tired and frustrated and my stuttering is not cooperating with me.

What you said about her mouth just won't form the words.. It's misleading watching her to be honest. I know it's a brain malformation issue, but you want to look for something visible. Sometime.. that's obviously the cause. With my stuttering, I get questioned the same way I questioned Schuyler when she speaks in my comment. Not being mean, or rude on, but wondering 'why?' and 'how?' you know? Why do I get hung on seemingly random sounds, random words, and everything else is fine? My grandmother used to tell me all the time to slow down, but she didn't understand that didn't help me at all and it actually hindered my thought process.

Stuttering is a brain issue too. There's nothing wrong with my mouth.. just like, as far as I know, there is nothing with Schuyler's (except you might have mentioned some control issues before). But it's funny that.. I find myself on the other side of the tracks, watching Schuyler and doing what my grandmother has done to me. Not quite getting that it's not a matter of forming the words.. but that she can't because of the malformations.

I'm glad that she's finding ways around that. That she's got the great skill to try and replicate sounds as best she can. The human voice is capable of making so many sounds and we only use a fraction in the English language.

Thank you responding to my comment, and for understanding that honestly, I'm just another person trying to understand how this works.

Alex said...

There was a mean mom, and I think the mean mom was the one with "long, long legs and long, long arms". What a creative and animated girl she is.

Russty said...

This was lovely! Her bright smile is so beautiful! You have a wonderful little girl there. Thank you for sharing the story with us.

I have speech issues, because of a brain disability. Both of my children have had different speech issues during their growth. At our house we like to always say that everyone has different ways of communicating. And often times that can lead to us being very creative people. I can't wait to show my older daughter when she gets home from school. She will love Schuyler's story.

Sharon said...

What a beautiful and expressive child! No, I didn't understand the words but I understood her body language and how much she loves Coraline.

Karen said...

What a cute kid! She would make a great silent movie actress, so expressive!

Michael said...

I wish I was more like her - you rule Schuyler!

Miz Kizzle said...

She's telling a story exactly the way kids her age tell stories:
"There was this guy, no wait! There were TWO guys and they had this , sort of, ummm, like a magic box-thing but not really a box, you know?"
My seven-year-old nephew recently treated me to a long (and very confusing) description of his recent trip to Disney World. Although I had been there three years ago and knew about most of the things he was describing, I still found it hard to follow. And my nephew has "normal" speech.
Kids have trouble following a linear story line. Hell, some adults do, too. There's lots of backtracking and extraneous detail.
I have no idea what Coraline is about. judging by her narration, there's a girl and a house and a little door. Someone is in the woods and someone has long hair. People have round things over their eyes.
She's waving her arms around frantically because she was excited by the story. I'd guess it's scary or funny or both by her body language. By her wide eyes and eye contact with the camera, she's trying hard to make you understand. I'd guess the "arrghhh!" at the end is a game the two of you play. It seems to signify scary fun and affection, at the same time.

Nightfall said...

I love the "Aaaaaaaaa" at the end. ;-) I wonder if part of the reason she likes the music so much is the non-sensical nature of the lyrics. I want someone to write them down so I can sing along, heh...

electric boogaloo said...

Oh my god, Rob. I am so sorry. I GET it now. For the first time, after all these years - I watch this and feel angry. It just hit me that this whole time I've been reading with the sympathetic interest of an outsider, seeing her as this ethereal and fascinating creature, a lovely character with her own musical moonspeak.

Watching her tell this story with all of the excitement of any kid who fucking loved a movie, my god. You can SEE her mind moving so much faster than her mouth can go, you can almost physically feel that human drive to communicate and the frustration of being blocked from doing so. It's a drive so strong that POWs in WWII developed codes in the way they swept the floor and tapped their feet, just so they could talk to one another. Not to make elaborate escape plans, but just to TALK.

It doesn't just break my heart seeing her struggle. It pisses me off. It's so wrong, so unfair, such complete bullshit that I don't know how you stand it.

She's amazing, Rob. You and Julie are lucky to know her and I hope you're right, I hope she someday masters a way to say all of the things that are on her mind.

Anonymous said...

What a beautiful girl she is.

She is brilliant in using gestures to help us understand - i could clearly hear and understand the claws and the long arms and long legs.

I believe you are exactly right. That girl is going to learn to speak - if she keeps up with the gestures and along with that her speech develops, she will be understood.