Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
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February 28, 2009
Mall monster
More video. Here's a peek at how Schuyler communicates in the course of a typical evening. She tells a little about herself, orders her dinner at a restaurant, and takes a slightly queasy spin with the camera.
Great videos! Despite what a wordsmith Rob is, they give me a glimpse of Schuyler that words can't describe. She speaks a lot more clearly than I imagined she did - I, too, can understand most of what she says.
Great video Rob. Schuyler is growing up! Wow! How cool does she think it is that she's see her dad's book about HER on the shelves? I mean cmon. COOL! Love her ordering.....with please. I hope you, Julie and Schuyler had a great night out as a family. I still have your book date on my calendar. I hope to make it out to see you. Shannon in windy-ass Austin
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.
I can see why she might find it frustrating to use the device to communicate when she can get half way there without it.
What this video really makes clear is the strength and "naturalness" of Schuyler's drive to talk. It must be so very frustrating for her, and for all of you, to have to intercept that drive in a sense and direct it otherwise: to the device, to signs, etc. It is lovely how she is not yet self-conscious about her speech -- when she hits the tween years, that will come all too soon, as it did with my daughter whose Asperger's causes her to speak like a recorder on fast-play.
What a beautiful child Schuyler is; what charisma she has. Karen
You guys totally don't realize this, but you 3 are the cutest family EVER. I mean it! Thanks for sharing these moments, it was really cool to see the BBOW in action. And also really cool to see and hear more of Schuyler!
Sometimes, she comes through SO CLEAR. The "please" and the "follow me" and the "i don't know". She's so beautiful. Thanks so much for sharing this with us. I'm not alone, I'm sure, in saying, "More! More!"
These are AWESOME. I've always loved your videos, Rob, and I love these, too! Schuyler is so freakin' cool. What did she order, btw? I couldn't understand what the box asked for (before to-mah-toes).
I'm such a mother hen--I was terrified that she was going to fall at the top of the escalator! I also thought it was fascinating to hear her speak and was surprised that some words come out so clearly. Schuyler is so lucky that you have documented her life so well. What a gift to her! My youngest is only 2, and I've forgotten so much!
I just love these videos. She is just such an adorable little girl. It was so surreal to see her looking at the book in the mall. But I love how she is halfway between brushing it off and admitting its really cool. Thanks Rob!
I just commented on your Feb. 9 post and read your old post on people-first language.
I am not wheelchair confined or wheelchair bound because my wheelchair gives me my *freedom.* Without it, I am confined to my house. I cried *from joy* when I got it after lengthy delays--free at last. I am not bound to it--no one duct tapes me to it. With it, I can move. Please talk to some people with disabilities before making the assumptions that you do. I know quite a number of other wheelchair users who all say the same thing. It's only journalists and some seniors with antiquated notions about all kinds of things (including race and sexism) who write "wheelchair bound."
Some of the things you say are incredibly hurtful and imply you know better than we do what disability is like. What do you think it's like at a job or a job interview when people see us as broken rather than whole? Not going to get the job. It also leads to public bullying.
I'm very interested in your daughter's story as I have a son who did not speak for several years--his speech could not even be tested. But every time I come back to the blog and parts of the book I leave feeling hurt and considered less than human.
Frida, I'm not going to respond at length because, really, what could I possibly say? Your experiences and your opinions are vastly different from my own, as the father of a child with a disability and, yes, a fierce advocate for her. I would never claim that my view is any more valid than yours, just as you have no idea what my life and my experiences are like.
It is that very diversity of experience and opinion, however, that ultimately makes me reject the idea of the People First "universal standard". How can there be a standard that everyone uses in their discussions of disability? Why would we even want that? Should I (or my daughter, or any of the people with disabilities to whom I've spoken and who agree with my position) be forced to change our way of thinking to match yours? Would you be willing to drop your opinions in favor of mine, if my views were to become "standard"?
I'm sorry you are hurt by my views, and that's the truth. But I am equally sorry for the many, many people with disabilities and their families and loved ones, who feel just as hurt by the whitewashing and candycoating that they feel they receive from People First Language. In the end, it is our diversity of experience that makes us human, which is, I think you'll agree, what everyone wants to be, first and foremost, rather than defined by a disability.
As for what Schuyler thinks about all this, she's nine. She currently believes she's a pirate named Fishhead Jane. Ask her again in a few years.
I can relate because I used to speak like Schuyler speaks. So, if I was only saying a few phrases (or answering direct questions), then I was understandable. However, I couldn't express most of my thoughts because no one would understand me. It was very frustrating. People would frequently ask my dad "What language is your daughter speaking?"
If my dad had just said to me: "You're broken, Vicky" then I would've been devastated. However, if he had said "You have trouble speaking because something in your brain isn't working right. Something in your brain is broken, but I would give you the tools to help you overcome the problem," then I would've been fine. So, I think Schuyler is fine with her dad calling her "broken" because she knows the context that he means it in. He doesn't mean it as an insult, but as an acknowledgment.
No, of course you guys can use whatever terms you wish. But often your phrasing suggests that we should all use terms that many of us find highly negative. I just don't know anyone on wheels under 60 who uses such terms.
But it's very weird for me to think that people think of me and my son as broken and I don't know, less than, though I know that people seem to see disability first.
Sugar coating disability? It's just not possible, and even if your lives and mine are entirely different, and our perspectives, I suspect there is some sameness that goes beyond words. The experience of disability beyond family and friends is brutal, and as you know, the experience of dealing with strangers, educators, even some in the health profession can be awful, as when they deny accommodations (we've had this too). This is often worse than the disability--I mean, I got bullied in public by adults today. But I'm sorry that you see physical disability as worse--I'm not sure that it is or that it can be compared. I feel lucky and blessed in my life and feel grateful my husband has a job and for the good health I do have (I'd rather have my issues than the ovarian cancer a friend has).
But yes, it causes me grief to think people look at me as less than a full human being. I encounter it every day, as do others.
But often your phrasing suggests that we should all use terms that many of us find highly negative. I just don't know anyone on wheels under 60 who uses such terms.
But I do. I hear from them all the time. So yes, it would seem that we have a diversity of opinion represented not just in our own experiences but in those of the people we meet and know as well. Which is exactly my point against People First Language.
But yes, it causes me grief to think people look at me as less than a full human being.
That is understandable, but that you choose to interpret my writing in that way is a result of your own experience and interpretation. I don't believe that people with disabilities are subhuman. Well, of course I don't.
We're not going to change each others' minds, Frida. All I'm hoping for here is that you will at least recognize that my family and I, and others who reject PFL, we love and respect and value our kids and advocate for them as hard as we possibly can. I don't think your views are wrong. But they are wrong for us, as ours are for you. But I challenge you to find a kid who has been advocated for as strongly as Schuyler, or as successfully, really. THAT'S a point I am not willing to concede or budge on.
I wish you the very best. Thanks for sharing your views. I become a stronger and better advocate for Schuyler and kids like her when I am asked to stop and re-evaluate my positions.
. . . she is much more understandable than you have been making her sound in your descriptions.
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.
I read - and loved - the book last year. I've been following the blog since then. Although you are a wonderful writer, nothing brought Schuyler to life the way those short video clips did. Somehow, I thought of her as something of a celebrity, kind of unreal. But seeing her waking up, with touseled hair...... well, she's a real, beautiful girl, with a great dad.
These video posts are AWESOME! Keep them coming! I can just visualize Schuyler getting ahold of the camera some time when you're not paying attention and narrating what SHE thinks about what's going on around her. Love watching what's going on in her world. Thanks for posting these!
This is so cool--so nice to see your wife, too. Schuyler is amazing and it's neat to watch her; helps me feel like we know her a little more. I am very impressed by how clearly she speaks. Thanks for sharing with all of us!
Love the videos! I've always wondered what it would be like to meet Schuyler and talk to her. I think the way you describe her - her actions, what she says to you - I sometimes forget that she's not like any other kid. She is a lot more expressive and her language clearer than I would have guessed. And "to-MAH-to" sauce, huh? Apparently she gets to be a little British with the BBOW...
Yes, I agree with you that we should all be able to define ourselves and our families in our own way--at least this is what I am learning from this, because I do admire the way you raise Schulyer and the way you have advocated for her. She is truly beautiful, as the video shows, and will be able to go far because of your advocacy for her (as will my son, thanks to therapies that just about bankrupted us). Even ten years ago we'd not have all the resources we do now--the therapies successful for my son didn't exist.
Thanks for your patience. I'm glad we could find some common ground and I feel better about reading. As I've said, I keep coming back. My son sometimes stops talking again and it's difficult.
As another person said in their comment, you are a good writer who has managed to convey a pretty good picture of Schuyler, but, wow, the video brings her to life in an amazing way. Thanks for posting these!
Thanks for the video. If Schuyler sounds more clear these days it's likely becuase prctice at making herself understood and that's certainly a good thing she can communicate through speech, sign language and her big box of words and have multiple tools to use depending on what kind of interaction she is having.
I really liked what the annonymous poster said about her dad and his abilities to communicate/mentation being very different than what others may perceive. I see that with my son Andrew. His sounds so much like Schuyler, a bit more hard consenants than she does, but the same lilting conversational sound quality to her words, just muddled up a bit. I can understand him in context with eyes on most of the time. But get him in our van after dark wile I am driving and have him try and tell me about his day? I am as lost as can be. That is the most frustrating time for us, when we are trying to communicate but I can't see him. Phone calls? Impossible. Saying, "Hi" or "goodmorning" is much different than having a flowing conversation about his day, or his questions that he has, or his dreams. These are things that I am simply missing out on. I remember you posting that at the end of your book when Schuyler was at the mall, all excited... "She doesn't have verbal words for things that thrill her, or none that most people can understand, anyway. When she runs over to tell me about hernew friends, too excited to find the words on her device, I smile and I miss out, my heart breaking just a little bit. One day, and maybe soon, she will be able to make all those words come clearly and expressively through her device. For now, she largely remains an enigmas, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest too God..." I know all too well what you mean here, that sadness and joy. It is hard, isn't it?
Thanks so much for the video. My seven-year-old daughter is fascinated by Schuyler -- she saw the book on my nightstand and has been asking lots of questions. I bought another copy and gave it to a friend as a gift, and my daughter couldn't wait to tell her about the little girl with the cool hair and Big Box of Words. We watched the videos together today, and she was thrilled to kind of 'meet' Schuyler.
Just one more thing, Andrew and my daughter Nicole saw the video. Andrew seemed to be realy impressed with seeing her using her BBOW. Ours has been sitting on a counter top for months, we have gone back to speech three days a week, intensive stuff hoping that this might be more our answer than the BBoW, for now anyway. Looks like he pulled it out last night, it is sitting on our computer desk now. Also, Nicole said she wants to come play with Schuyler. Too bad you guys don't live up here in Washington! I think she was serious! =0)
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?"
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.
She speaks so well! I cried for her success. Yeh, I'm a sentimental sap like that. If my son can talk that well someday I'll be a proud mama indeed. You have a very special little girl, but I'm sure you know that.
Wow! This video was absolutely fascinating. I've been reading you since before Schuyler was born and have read your descriptions of her disability many times. To both see and hear her (in my case for the first time) was just sort of amazing. My impressions are: 1) Schuyler doesn't sound "other worldly" to me. While it's obvious that she's got limitations, one can decipher alot in context and her voice is completely normal except for her inability to form the correct shapes with her mouth (again, just my very amateur inexpert impression) 2) Schuyler seems even more handy with the BBoW than I would have thought possible at her age.
Thanks for putting this up! I loved seeing Schuyler in action.
Hey, Rob. That video was so great to see, for so many reasons. It's inspiring to watch Schuyler use her communication device, I hope Max is able to use it as easily as she can, soon. Also, her speech is amazing to me. Because now that Max is finally saying a few words, he sounds just like Schuyler. I hope, too, he is able to be as conversational as she is. I will bet that her speech gets clearer as time goes on. I am so impressed by how far she has come.
And, she is just so very cute!
I am somewhere in the middle on People First Language. I understand the point of it. I just don't think it's wrong or criminal to not use it. Sometimes, I use it to describe Max (a kid with special needs) but sometimes, when I'm just writing, I'll say a special-needs kid. I think the context and content of what I'm writing about is way more important.
Rob, thanks for sharing more of Schuyler with us (and thanks to Julie and Schuyler for participating in your Flip-deo!). I love seeing Schuyler in action. It is wonderful to see Schuyler using a combination of her own voice, sign, and the BBOW to communicate--and I imagine she'll find her own balance as she grows. I can also see how it would be frustrating for her to have to carry on a real conversation with her own ideas on the BBOW, as she has to deal with multiple screens, etc. Do new devices (or more advanced devices that Schuyler might use when she's older) allow for a person to type his or her thoughts and press "Speak"? Sort of like IMing with a voice?
It's great to see and hear that Schuyler can be understood, especially in a question/answer format where the answers are somewhat predictable. Yes, she was incredibly clear, but there was also a context for her words. As you said in an earlier post, I'd imagine that if she wanted to tell you a story about something that happened to her at school, you might have a harder time understanding her.
This is a long comment when all I really wanted to say was thank you. I appreciate you taking the time to share pieces of your life, and of Schuyler, with us. It's a real gift and brings so much more life to all of your other words!
I was very curious about the waitress' response to Schuyler's use of her word machine. Did the waitress' already know Schuyler? I would be interested to know how strangers tend to respond to Schuyler's use of the machine. (You may have discussed this in your book but, *ack!* I haven't ordered mine yet.)
I would hope that I would find it as common-day as the waitress did, but I'm not sure. Definately now that I've seen this video I would, because now I know what it is.
I was very curious about the waitress' response to Schuyler's use of her word machine. Did the waitress' already know Schuyler?
No, but one of the reasons that we go to California Pizza Kitchen is that every time we've been there, they have been fantastic about Schuyler and her device, never batting an eye and always addressing her directly and with respect. I don't know if there's some kind of disability sensitivity training that takes place or if it's just a part of the corporate culture of that particular restaurant, but she's always received a high level of enthusiasm and understanding from the wait staff there, particularly at that location (at Stonebriar Mall in Frisco, Texas). And so we go back, which is probably worth noting if you're a restaurant manager. Families with a disability tend to return to where they feel welcome.
That particular waitress did come back and ask about the device and said that she's a neuro major in college.
I will say that more often than not, servers in restaurants are pretty good about Schuyler's device. The only issue is that sometimes a restaurant is too loud to hear the voice clearly, but even then, they will usually just lean over and read the display.
Schuyler's experience in ordering her own dinner may seem mundane, but in a way, that's the point. It's a boring, everyday use that has become second nature to her, the way that her use of the Big Box of Words will hopefully become one day. And it's a concrete lesson in how using the device gets results.
What did she want to eat? Some kind of pasta with tomato sauce, but even after hearing it three times I couldn't make it out... Is there a pasta called canzoni? Didn't sound like ravoli or canneloni...
Mark, the Disability Services Manager at my college is blind and has a talking laptop. It pronounces some common words in ways that apparently still make him laugh even having had the thing for 7 or 8 years. It also gets the intonation of sentences wrong, so it sounds really weird when it reads back letters that he's typed.
Mark isn't very interested in getting a more elegant voice on his laptop because he's the only person who has to understand it. But the BBOW is different because everyone else is supposed to understand it, so I suppose there must be some sort of error-reporting process for strangely pronounced words?
And now I wonder how many different regional variant accents they have for different parts of the world. As well as vocabulary variants like whether people round you say "pop" or "soda" or "fizzy drink" or "carbonated beverage"...
Wow-Schuyler has really mastered DramamineCam! I foresee a great future in "gritty" television. :) I also loved seeing Julie with her--reminds me so much of how I talk to kids. The "please" added to the end of the sentence was classic.
It was very enlightening hearing Schuyler talk. By the expression in her eyes, it's obvious that she's intelligent. I was surprised at how large the BBoW is. I thought it would be maybe twice the size of a BlackBerry. I know nine-year-olds and one thing about them is they're starting to be self-conscious at that age. They dearly want to blend in with their peers and they're terrified of seeming different or freaky. In a later post you described how S. doesn't want the kids in the after school program to realize she doesn't talk very well. I'm certain that they already know, but what she means is she doesn't want to use the BBoW in front of them because it would make it impossible to ignore that she has a disability. The fantasy of seeming normal isn't just something kids indulge in. My close friend has cerebral palsy. She's an attorney, very smart and very funny and she's quite attractive. She walks with a severe limp and, when we got to be good friends, she confided that she that she deliberately sits or stands still when she's with strangers so they won't realize she's disabled. I've noticed that the guys who are very pleased to talk to her when she's sitting in a bar or relaxing in a lounge chair by the side of a pool are gone in a heartbeat when they see her walk. It makes me very sad that she treasures these moments of pretend-normalcy but that's the way it is.
Rob. It's been a couple of years since I last checked in on you guys. I can't believe how much Schuyler has grown (and obviously you got the book published - will have to grab myself a copy). She has certainly grown into a beautiful young lady. I agree with your later post about Schuyler's speech. My son speaks well but has days when the CP just gets in the way of the messages between his brain and mouth. And even though he talks so well, it takes me ages to work out what he is saying. Sometimes because he is using big words that I'm not expecting. Challenging for me but incredibly frustrating for him. Will try not to be absent for so long this time;-)
I enjoyed the opportunity to both hear Schuyler's speech and see her use her box. I understood much of what she said, but mainly because of the context. My son used to speak in mostly vowels also, and now tends to substitute consonants that are easier for him to say (mostly /d/) so I'm good at filling in the blanks and finding rhyming words that fit the context. And for whatever it's worth, I figured out the "fusilli" order as well.
Is that the HD Mino or the regular one? The picture is great!!
ReplyDeleteI have the Flip Video Ultra, but have been wanting to trade up to the HD Mino.
I love the videos!
ReplyDeleteGreat job Schuyler... I can understand you just fine... But daddy makes it hard with all the background mall noise... LOL - Cool post Rob!
ReplyDeleteGreat videos! Despite what a wordsmith Rob is, they give me a glimpse of Schuyler that words can't describe. She speaks a lot more clearly than I imagined she did - I, too, can understand most of what she says.
ReplyDeleteAnd LOL at Schuydoku. :D
Cuuuuuute!
ReplyDeleteGreat video Rob. Schuyler is growing up! Wow! How cool does she think it is that she's see her dad's book about HER on the shelves? I mean cmon. COOL! Love her ordering.....with please. I hope you, Julie and Schuyler had a great night out as a family.
ReplyDeleteI still have your book date on my calendar. I hope to make it out to see you.
Shannon in windy-ass Austin
This is awesome! I love the "please". :)
ReplyDeleteYeah, I'm glad you didn't have to watch the last minute or so before you ate that pizza. ;)
ReplyDeleteI can understand more than half of what Schuyler says, but in general, that's pretty cool. I love that the box has an English accent.
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.
ReplyDeleteI can see why she might find it frustrating to use the device to communicate when she can get half way there without it.
What this video really makes clear is the strength
ReplyDeleteand "naturalness" of Schuyler's drive to talk. It
must be so very frustrating for her, and for all of
you, to have to intercept that drive in a sense and
direct it otherwise: to the device, to signs, etc. It
is lovely how she is not yet self-conscious about
her speech -- when she hits the tween years,
that will come all too soon, as it did with my
daughter whose Asperger's causes her to speak
like a recorder on fast-play.
What a beautiful child Schuyler is; what charisma
she has. Karen
Yes, she's missing some consonants, but she is much more understandable than you have been making her sound in your descriptions.
ReplyDeleteI think this is important enough to address this in an entry. So I will.
You all touch my heart. Thanks for sharing. Miss Schuyler, you are awesome. Love,
ReplyDeleteBarbara from Boston
Such a delightful glimpse into the world of Schuyler and your family. Just another family hanging out at the mall! ;-)
ReplyDeleteI'm really looking forward to your separate post about Schuyler's language, too.
You guys totally don't realize this, but you 3 are the cutest family EVER. I mean it! Thanks for sharing these moments, it was really cool to see the BBOW in action. And also really cool to see and hear more of Schuyler!
ReplyDeleteSometimes, she comes through SO CLEAR. The "please" and the "follow me" and the "i don't know". She's so beautiful. Thanks so much for sharing this with us. I'm not alone, I'm sure, in saying, "More! More!"
ReplyDeleteThese are AWESOME. I've always loved your videos, Rob, and I love these, too! Schuyler is so freakin' cool. What did she order, btw? I couldn't understand what the box asked for (before to-mah-toes).
ReplyDeleteI'm such a mother hen--I was terrified that she was going to fall at the top of the escalator! I also thought it was fascinating to hear her speak and was surprised that some words come out so clearly. Schuyler is so lucky that you have documented her life so well. What a gift to her! My youngest is only 2, and I've forgotten so much!
ReplyDeleteLaura
Love, love, LOVE the video posts :)
ReplyDelete---Nikki
I just love these videos. She is just such an adorable little girl. It was so surreal to see her looking at the book in the mall. But I love how she is halfway between brushing it off and admitting its really cool. Thanks Rob!
ReplyDeleteI just commented on your Feb. 9 post and read your old post on people-first language.
ReplyDeleteI am not wheelchair confined or wheelchair bound because my wheelchair gives me my *freedom.* Without it, I am confined to my house. I cried *from joy* when I got it after lengthy delays--free at last. I am not bound to it--no one duct tapes me to it. With it, I can move. Please talk to some people with disabilities before making the assumptions that you do. I know quite a number of other wheelchair users who all say the same thing. It's only journalists and some seniors with antiquated notions about all kinds of things (including race and sexism) who write "wheelchair bound."
Some of the things you say are incredibly hurtful and imply you know better than we do what disability is like. What do you think it's like at a job or a job interview when people see us as broken rather than whole? Not going to get the job. It also leads to public bullying.
I'm very interested in your daughter's story as I have a son who did not speak for several years--his speech could not even be tested. But every time I come back to the blog and parts of the book I leave feeling hurt and considered less than human.
Frida, I'm not going to respond at length because, really, what could I possibly say? Your experiences and your opinions are vastly different from my own, as the father of a child with a disability and, yes, a fierce advocate for her. I would never claim that my view is any more valid than yours, just as you have no idea what my life and my experiences are like.
ReplyDeleteIt is that very diversity of experience and opinion, however, that ultimately makes me reject the idea of the People First "universal standard". How can there be a standard that everyone uses in their discussions of disability? Why would we even want that? Should I (or my daughter, or any of the people with disabilities to whom I've spoken and who agree with my position) be forced to change our way of thinking to match yours? Would you be willing to drop your opinions in favor of mine, if my views were to become "standard"?
I'm sorry you are hurt by my views, and that's the truth. But I am equally sorry for the many, many people with disabilities and their families and loved ones, who feel just as hurt by the whitewashing and candycoating that they feel they receive from People First Language. In the end, it is our diversity of experience that makes us human, which is, I think you'll agree, what everyone wants to be, first and foremost, rather than defined by a disability.
As for what Schuyler thinks about all this, she's nine. She currently believes she's a pirate named Fishhead Jane. Ask her again in a few years.
I can relate because I used to speak like Schuyler speaks. So, if I was only saying a few phrases (or answering direct questions), then I was understandable. However, I couldn't express most of my thoughts because no one would understand me. It was very frustrating. People would frequently ask my dad "What language is your daughter speaking?"
ReplyDeleteIf my dad had just said to me: "You're broken, Vicky" then I would've been devastated. However, if he had said "You have trouble speaking because something in your brain isn't working right. Something in your brain is broken, but I would give you the tools to help you overcome the problem," then I would've been fine. So, I think Schuyler is fine with her dad calling her "broken" because she knows the context that he means it in. He doesn't mean it as an insult, but as an acknowledgment.
No, of course you guys can use whatever terms you wish. But often your phrasing suggests that we should all use terms that many of us find highly negative. I just don't know anyone on wheels under 60 who uses such terms.
ReplyDeleteBut it's very weird for me to think that people think of me and my son as broken and I don't know, less than, though I know that people seem to see disability first.
Sugar coating disability? It's just not possible, and even if your lives and mine are entirely different, and our perspectives, I suspect there is some sameness that goes beyond words. The experience of disability beyond family and friends is brutal, and as you know, the experience of dealing with strangers, educators, even some in the health profession can be awful, as when they deny accommodations (we've had this too). This is often worse than the disability--I mean, I got bullied in public by adults today. But I'm sorry that you see physical disability as worse--I'm not sure that it is or that it can be compared. I feel lucky and blessed in my life and feel grateful my husband has a job and for the good health I do have (I'd rather have my issues than the ovarian cancer a friend has).
But yes, it causes me grief to think people look at me as less than a full human being. I encounter it every day, as do others.
But often your phrasing suggests that we should all use terms that many of us find highly negative. I just don't know anyone on wheels under 60 who uses such terms.
ReplyDeleteBut I do. I hear from them all the time. So yes, it would seem that we have a diversity of opinion represented not just in our own experiences but in those of the people we meet and know as well. Which is exactly my point against People First Language.
But yes, it causes me grief to think people look at me as less than a full human being.
That is understandable, but that you choose to interpret my writing in that way is a result of your own experience and interpretation. I don't believe that people with disabilities are subhuman. Well, of course I don't.
We're not going to change each others' minds, Frida. All I'm hoping for here is that you will at least recognize that my family and I, and others who reject PFL, we love and respect and value our kids and advocate for them as hard as we possibly can. I don't think your views are wrong. But they are wrong for us, as ours are for you. But I challenge you to find a kid who has been advocated for as strongly as Schuyler, or as successfully, really. THAT'S a point I am not willing to concede or budge on.
I wish you the very best. Thanks for sharing your views. I become a stronger and better advocate for Schuyler and kids like her when I am asked to stop and re-evaluate my positions.
. . . she is much more understandable than you have been making her sound in your descriptions.
ReplyDeleteMy 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.
I read - and loved - the book last year. I've been following the blog since then. Although you are a wonderful writer, nothing brought Schuyler to life the way those short video clips did. Somehow, I thought of her as something of a celebrity, kind of unreal. But seeing her waking up, with touseled hair...... well, she's a real, beautiful girl, with a great dad.
ReplyDeleteIt's really an amazing gift to be able to see -and hear- Schuyler's world.
ReplyDeleteThese video posts are AWESOME! Keep them coming!
ReplyDeleteI can just visualize Schuyler getting ahold of the camera some time when you're not paying attention and narrating what SHE thinks about what's going on around her. Love watching what's going on in her world. Thanks for posting these!
-Sarah
This is so cool--so nice to see your wife, too. Schuyler is amazing and it's neat to watch her; helps me feel like we know her a little more. I am very impressed by how clearly she speaks. Thanks for sharing with all of us!
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ReplyDeleteLove the videos! I've always wondered what it would be like to meet Schuyler and talk to her. I think the way you describe her - her actions, what she says to you - I sometimes forget that she's not like any other kid. She is a lot more expressive and her language clearer than I would have guessed. And "to-MAH-to" sauce, huh? Apparently she gets to be a little British with the BBOW...
ReplyDeleteThanks for sharing these!
Yes, I agree with you that we should all be able to define ourselves and our families in our own way--at least this is what I am learning from this, because I do admire the way you raise Schulyer and the way you have advocated for her. She is truly beautiful, as the video shows, and will be able to go far because of your advocacy for her (as will my son, thanks to therapies that just about bankrupted us). Even ten years ago we'd not have all the resources we do now--the therapies successful for my son didn't exist.
ReplyDeleteThanks for your patience. I'm glad we could find some common ground and I feel better about reading. As I've said, I keep coming back. My son sometimes stops talking again and it's difficult.
As another person said in their comment, you are a good writer who has managed to convey a pretty good picture of Schuyler, but, wow, the video brings her to life in an amazing way. Thanks for posting these!
ReplyDeleteThanks for the video. If Schuyler sounds more clear these days it's likely becuase prctice at making herself understood and that's certainly a good thing she can communicate through speech, sign language and her big box of words and have multiple tools to use depending on what kind of interaction she is having.
ReplyDeleteHi Rob,
ReplyDeleteI really liked what the annonymous poster said about her dad and his abilities to communicate/mentation being very different than what others may perceive. I see that with my son Andrew. His sounds so much like Schuyler, a bit more hard consenants than she does, but the same lilting conversational sound quality to her words, just muddled up a bit. I can understand him in context with eyes on most of the time. But get him in our van after dark wile I am driving and have him try and tell me about his day? I am as lost as can be. That is the most frustrating time for us, when we are trying to communicate but I can't see him. Phone calls? Impossible. Saying, "Hi" or "goodmorning" is much different than having a flowing conversation about his day, or his questions that he has, or his dreams. These are things that I am simply missing out on. I remember you posting that at the end of your book when Schuyler was at the mall, all excited... "She doesn't have verbal words for things that thrill her, or none that most people can understand, anyway. When she runs over to tell me about hernew friends, too excited to find the words on her device, I smile and I miss out, my heart breaking just a little bit. One day, and maybe soon, she will be able to make all those words come clearly and expressively through her device. For now, she largely remains an enigmas, the most daunting one of my life. She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest too God..." I know all too well what you mean here, that sadness and joy. It is hard, isn't it?
Earline
Thanks so much for the video. My seven-year-old daughter is fascinated by Schuyler -- she saw the book on my nightstand and has been asking lots of questions. I bought another copy and gave it to a friend as a gift, and my daughter couldn't wait to tell her about the little girl with the cool hair and Big Box of Words. We watched the videos together today, and she was thrilled to kind of 'meet' Schuyler.
ReplyDeleteJust one more thing,
ReplyDeleteAndrew and my daughter Nicole saw the video. Andrew seemed to be realy impressed with seeing her using her BBOW. Ours has been sitting on a counter top for months, we have gone back to speech three days a week, intensive stuff hoping that this might be more our answer than the BBoW, for now anyway. Looks like he pulled it out last night, it is sitting on our computer desk now. Also, Nicole said she wants to come play with Schuyler. Too bad you guys don't live up here in Washington! I think she was serious! =0)
Earline
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?"
ReplyDeleteAnd, 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.
She speaks so well! I cried for her success. Yeh, I'm a sentimental sap like that. If my son can talk that well someday I'll be a proud mama indeed. You have a very special little girl, but I'm sure you know that.
ReplyDeleteWow! This video was absolutely fascinating. I've been reading you since before Schuyler was born and have read your descriptions of her disability many times. To both see and hear her (in my case for the first time) was just sort of amazing. My impressions are: 1) Schuyler doesn't sound "other worldly" to me. While it's obvious that she's got limitations, one can decipher alot in context and her voice is completely normal except for her inability to form the correct shapes with her mouth (again, just my very amateur inexpert impression) 2) Schuyler seems even more handy with the BBoW than I would have thought possible at her age.
ReplyDeleteThanks for putting this up! I loved seeing Schuyler in action.
Hey, Rob. That video was so great to see, for so many reasons. It's inspiring to watch Schuyler use her communication device, I hope Max is able to use it as easily as she can, soon. Also, her speech is amazing to me. Because now that Max is finally saying a few words, he sounds just like Schuyler. I hope, too, he is able to be as conversational as she is. I will bet that her speech gets clearer as time goes on. I am so impressed by how far she has come.
ReplyDeleteAnd, she is just so very cute!
I am somewhere in the middle on People First Language. I understand the point of it. I just don't think it's wrong or criminal to not use it. Sometimes, I use it to describe Max (a kid with special needs) but sometimes, when I'm just writing, I'll say a special-needs kid. I think the context and content of what I'm writing about is way more important.
Good Lord, she is adorable. She was very self-assured giving us all a tour of the mall, a trait my former 9-year-old self envies!
ReplyDeleteAlso, Schudoku looks like a game I could get behind. :)
Rob, thanks for sharing more of Schuyler with us (and thanks to Julie and Schuyler for participating in your Flip-deo!). I love seeing Schuyler in action. It is wonderful to see Schuyler using a combination of her own voice, sign, and the BBOW to communicate--and I imagine she'll find her own balance as she grows. I can also see how it would be frustrating for her to have to carry on a real conversation with her own ideas on the BBOW, as she has to deal with multiple screens, etc. Do new devices (or more advanced devices that Schuyler might use when she's older) allow for a person to type his or her thoughts and press "Speak"? Sort of like IMing with a voice?
ReplyDeleteIt's great to see and hear that Schuyler can be understood, especially in a question/answer format where the answers are somewhat predictable. Yes, she was incredibly clear, but there was also a context for her words. As you said in an earlier post, I'd imagine that if she wanted to tell you a story about something that happened to her at school, you might have a harder time understanding her.
This is a long comment when all I really wanted to say was thank you. I appreciate you taking the time to share pieces of your life, and of Schuyler, with us. It's a real gift and brings so much more life to all of your other words!
I was very curious about the waitress' response to Schuyler's use of her word machine. Did the waitress' already know Schuyler? I would be interested to know how strangers tend to respond to Schuyler's use of the machine. (You may have discussed this in your book but, *ack!* I haven't ordered mine yet.)
ReplyDeleteI would hope that I would find it as common-day as the waitress did, but I'm not sure. Definately now that I've seen this video I would, because now I know what it is.
I was very curious about the waitress' response to Schuyler's use of her word machine. Did the waitress' already know Schuyler?
ReplyDeleteNo, but one of the reasons that we go to California Pizza Kitchen is that every time we've been there, they have been fantastic about Schuyler and her device, never batting an eye and always addressing her directly and with respect. I don't know if there's some kind of disability sensitivity training that takes place or if it's just a part of the corporate culture of that particular restaurant, but she's always received a high level of enthusiasm and understanding from the wait staff there, particularly at that location (at Stonebriar Mall in Frisco, Texas). And so we go back, which is probably worth noting if you're a restaurant manager. Families with a disability tend to return to where they feel welcome.
That particular waitress did come back and ask about the device and said that she's a neuro major in college.
I will say that more often than not, servers in restaurants are pretty good about Schuyler's device. The only issue is that sometimes a restaurant is too loud to hear the voice clearly, but even then, they will usually just lean over and read the display.
Schuyler's experience in ordering her own dinner may seem mundane, but in a way, that's the point. It's a boring, everyday use that has become second nature to her, the way that her use of the Big Box of Words will hopefully become one day. And it's a concrete lesson in how using the device gets results.
I wondered if that was Stonebriar.
ReplyDeleteHave you taken her skating?
What did she want to eat? Some kind of pasta with tomato sauce, but even after hearing it three times I couldn't make it out... Is there a pasta called canzoni? Didn't sound like ravoli or canneloni...
ReplyDelete"Fusilli". The device mispronounced it.
ReplyDeleteFusilli! *lol*
ReplyDeleteMark, the Disability Services Manager at my college is blind and has a talking laptop. It pronounces some common words in ways that apparently still make him laugh even having had the thing for 7 or 8 years. It also gets the intonation of sentences wrong, so it sounds really weird when it reads back letters that he's typed.
Mark isn't very interested in getting a more elegant voice on his laptop because he's the only person who has to understand it. But the BBOW is different because everyone else is supposed to understand it, so I suppose there must be some sort of error-reporting process for strangely pronounced words?
And now I wonder how many different regional variant accents they have for different parts of the world. As well as vocabulary variants like whether people round you say "pop" or "soda" or "fizzy drink" or "carbonated beverage"...
Wow-Schuyler has really mastered DramamineCam! I foresee a great future in "gritty" television. :) I also loved seeing Julie with her--reminds me so much of how I talk to kids. The "please" added to the end of the sentence was classic.
ReplyDeleteIt was very enlightening hearing Schuyler talk. By the expression in her eyes, it's obvious that she's intelligent. I was surprised at how large the BBoW is. I thought it would be maybe twice the size of a BlackBerry.
ReplyDeleteI know nine-year-olds and one thing about them is they're starting to be self-conscious at that age. They dearly want to blend in with their peers and they're terrified of seeming different or freaky. In a later post you described how S. doesn't want the kids in the after school program to realize she doesn't talk very well. I'm certain that they already know, but what she means is she doesn't want to use the BBoW in front of them because it would make it impossible to ignore that she has a disability.
The fantasy of seeming normal isn't just something kids indulge in. My close friend has cerebral palsy. She's an attorney, very smart and very funny and she's quite attractive. She walks with a severe limp and, when we got to be good friends, she confided that she that she deliberately sits or stands still when she's with strangers so they won't realize she's disabled. I've noticed that the guys who are very pleased to talk to her when she's sitting in a bar or relaxing in a lounge chair by the side of a pool are gone in a heartbeat when they see her walk.
It makes me very sad that she treasures these moments of pretend-normalcy but that's the way it is.
Rob.
ReplyDeleteIt's been a couple of years since I last checked in on you guys. I can't believe how much Schuyler has grown (and obviously you got the book published - will have to grab myself a copy).
She has certainly grown into a beautiful young lady. I agree with your later post about Schuyler's speech. My son speaks well but has days when the CP just gets in the way of the messages between his brain and mouth. And even though he talks so well, it takes me ages to work out what he is saying. Sometimes because he is using big words that I'm not expecting. Challenging for me but incredibly frustrating for him.
Will try not to be absent for so long this time;-)
I enjoyed the opportunity to both hear Schuyler's speech and see her use her box. I understood much of what she said, but mainly because of the context. My son used to speak in mostly vowels also, and now tends to substitute consonants that are easier for him to say (mostly /d/) so I'm good at filling in the blanks and finding rhyming words that fit the context. And for whatever it's worth, I figured out the "fusilli" order as well.
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