For those of you interested in how this worked exactly, I asked Schuyler the questions and she answered them directly. I only assisted her with grammar when she asked for help, and then I would point out what she got wrong and let her figure out how to fix it. (When there are caps or exclamation points, those were very specifically dictated by Schuyler. She can be particular.) She mostly used her speech device (which she calls Pinkessa), but also answered verbally when she could and used sign language very occasionally. This is how communication with Schuyler works; using just one method would be very strange for her.
When couldn't entirely put something into words accurately, she was able to mime it out for me so I understood. Once again, she illustrates both the frustration and the weird beauty of how she communicates. It takes some work to learn Schuylerese, but it can be pure poetry when you get it.
How did you finally manage with your locker at your new school?
It's hard, but I can do it now. I like my new school and my new teachers and my new friends. We are the purple hogs!!!
Rate your dad's current facial hair on a scale of "awesome" to "embarrassing".
I liked it a lot. Daddy looked like Santa Claus.
Schuyler what would be your idea of a perfect day?
I like to go swimming with my dad and mom.
What do you like most about your dad? What is your favorite movie?
I liked the mustache. Daddy is so funny. King Kong, Coraline, The Iron Giant.
What are you most looking forward to about school this year?
I like to play the big drums. I want to make new friends.
If Godzilla and King Kong had a fight who do you think would win?
Godzilla. He has things on his back and shoots fire.
If you were going to make a movie, what would it be about?
I would make a movie about mermaids who have powers.
What is your favorite song and why?
Lady Gaga, Telephone. I like it A LOT!!!
Do you think of yourself as different? And what makes you different?
Pinkessa is different and I am too. I can't talk.
What is the one thing you want everyone to know about kids who may be different?
We like to play and have fun. We don't like pointing and mean people.
So what is Rob REALLLLLY like?
He is funny like a clown!!!!
What is the funniest thing your dad ever did?
He said I had a tail.
Have your parents signed you up for Girl Scouts yet?
No. I want to go. I want to camping and sell cookies.
I'm just slightly older then you and i think you are fantastic!!! What do you want to be when you get older?
I want to help sick people and also I want to be a police woman.
Hi Schuyler-what are some things that make you happy?
Daddy and Mommy and Maxie and Lulu and Petey and my mice and Squinkees and LaLa Loopsies. And that's it!
Do you like it when your parents help people understand what you're saying or try to explain what you're thinking? Or is it annoying sometimes?
Yes, I can't talk and Daddy and Mommy know what I saying.
Do you feel like a special, famous kind of person, being the subject of a book and a blog? Or do you just kind of ignore that?
I don't care!!!!!
I'd like to ask if she's offended by the word "retard" when it's used by people to make a joke or poke someone else. Also, I'd like to know if she thinks Justin Bieber is a tool.
I don't like that word AT ALL!!!! It is a bad word! I don't like him at all!! He's not my boyfriend!!
You've got a wonderful fashion sense, and I would like to know - what are a couple of things that you are excited to wear to school? Do you like tights and tennis shoes or boots? Do you prefer skirts or pants?
I like skirts and dresses earrings and I want some new boots. I want purple hair again.
Tell me about the your biggest accomplishment so far. What do you want to be when you grow up?
I flew an airplane. I want to be a pilot.
Schuyler - tell us something your daddy does that is super GROSS!!!!!
He farts! (Note: She's a hypocrite...)
Schuyler, if you could do anything in the world, what would you choose to do?
Have fun with my dad and my mom.
Ninja, pirate or dinosaur?
Dinosaurs are my favorite.
What's your favorite nickname?
Daddy calls me Schuyler Bear and I like that. I don't like Chickenhead Jones!
If Schuyler could have any super power, what would it be?
I would be a water bender. (Note: That's a reference to the Avater/Last Airbender tv series.)
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| Airbending Schuyler art by Crystal |
If you could have any three pets, what would they be?
A cat, a turtle, and a bird.
Are you dressing up for Halloween? What is your costume going to be?
Medusa! We are making a snake hat!!!
Do you think you'll ever have your own blog? If so, what would you write about?
I will write about swimming and flying airplanes and school and band and my friends and Daddy and Mommy.
Do you like video games? Which ones? I like Nintendo and really old games.
I like Sports Resort and Mariokarts!!!!
Hi Schuyler! My son, Ethan, is 6 and has a Vantage Lite like yours. He picked black, though. We are having trouble figuring out what to call it. Do you have any ideas?
You can name it Max. Max is a name for a boy.
Do the kids at school ever pick on you? If so, why do you think they pick on you and how do you answer them?
Yes. They're mean and not friends!!!! I tell them I don't care!!!
I visited Plano last summer and I got super excited when I saw the Purple Cow, because I remembered it from this blog. I didn't get to try it though :( When I visit Plano again, what's the best thing to get at the Purple Cow?
I like to eat mint chocolate chip ice cream!!!!
Hi Schuyler! What's your favourite story?
My favorite book is Don't Kiss the Frog!!
If you could either fly or be invisible which would you be and why?
I want to be invisible and I don't want bad guys get me.
Hi Schuyler- You might remember us from the Apraxia Walk-a-thon in 2009. You walked and played with my daughter Ava. She is 5 yrs old now and she is getting the same Big Box of Words as you have. Here's my questions:
1. Was it hard for you to learn how to use it?
No, it is so easy! Mrs. Williams helped me to learn Pinkessa.
2. Do you like using it, or do you like signing better?
I like Pinkessa better.
3. When other people ask why you can't talk, what do you wish you could say?
My brain won't let me talk. I have Pinkessa to help me talk.
What is the toughest thing about not being able to talk? Do you ever wish you could just tell people what you think?
It's hard when people ask me questions. Yes.
Hi Schuyler! I am a future speech language pathologist and wanted to ask about Pinkessa :)
When do you use it most?
At my school.
How would you change it so that works best for you?
Make it give me a voice.
(Note: She had a hard time with this one, not because she didn't have an answer but because she didn't know how to put it in words. This is a case where being with her in person helps. She indicated with her hands that when she says she wants it to give her a voice, she means that literally. She wants the device to enable her to physically speak for herself with her own physical voice. I never knew that until now.)
What do your parents do that embarrass you?
Daddy calls me Chickenhead Jones!! Mommy poots!!
23 comments:
This is so wonderful. I loved all of her answers and I think her comment about wanting a voice left me awestruck. If you didn't have someone asking, you may have not known that fact. Thanks for sharing and working with Schuyler on all of the answers.
Schuyler, your answers are just wonderful, so honest!
Rob, you have a wonderful, amazing, insightful daughter who clearly loves you a lot. You should be so very proud.
Loved this, maybe in the future she can answer questions from the blog readers again, when she feels like it.
I'm so excited to hear her voice. I'm absolutely fascinated with how utterly intelligent she is, and it is parents like you who allow her to express herself in any way possible that make my future job so exciting! Keep up the great work, Schuyler, and I can't wait to hopefully meet you soon!
This was awesome, Rob. Thank you Schuyler for letting us get to know you a little better! It was great of you to answer everyone's questions. I didn't think of a question to ask you myself, but I just want to tell you that I think your fashion sense is terrific and you are a very smart, beautiful girl inside and out. Rock on, kiddo! :)
I have tears of joy, Rob. I remember the nubbin, the chubbin, the Schuyler monster and now this wonderful articulate kid you have. Her personality doesn't need a voice. I think the BB of words, signing, and her unique "speech" will be plenty. I can't believe she's the same chubbin I sent John Lithgow's book when she was about 3. I know I'm a stranger, but this post made me so, so proud of her. I'm seriously teary about it. So much love to your whole family and extra kisses to your dad for sharing you with us. You are going to be a totally kick ass blogger!
This post justifies the existence of the internet. Thanks so much for sharing.
I'm going to the corner now where I solemnly contemplate how an eleven-year-old ended up orders of magnitude cooler than I'll ever be.
This is so awesome. Thanks for sharing a little bit of her with us. She sounds like an amazing girl - I hope someday Megan can express herself as well with her communication device.
Articulate and insightful just like her Daddy! Thank you both!
That was so fun to read - thank you, Schuyler! And thank you Rob for passing on what she had to say. I teared up over the desire that her device give her a literal voice... I am confident that will be possible for her as they upgrade how they work.
This was fantastic to read. The part about wishing her device could give her a voice *really* struck a chord with me; I wonder if my son feels the same way?
I loved reading this. Thank you for sharing, Schuyler. You are terrific.
Schuyler, you are one awesome kid! Thanks for answering all these questions. :)
Love your girl, Rob. And she clearly loves you and Julie. Reading Schuyler's answers was the bright spot of my day! And I thought I was the only one who called my kids "Chickenhead!" Jones as a second name is inspired!
Dang. Somebody get Rob and Julie some Beano. What that poor kid has to live with! ;-)
I also really enjoyed reading Schuyler's answers. Thanks so much!
Wow. She did a great job. One word of sort of warning. Middle School Halloween can be tough. At many schools, it's common for kids to wear "group costumes." That doesn't mean Schuyler should (and maybe her school doesn't permit costumes at all. But she should at least know if this is the case and that her costume if she wears one to school may really stand out. It's one of those things the school never tells you about. The admininstrators often pretend ignorance ("group costumes...I don't know what you mean" said by a principal when a parent inquired about them even though 1/4 of the girls were dressed as fairies 1/4 as "sexy fireman (yes in Middle School!!!!!!!) 1/4 as Eskimos and then small groups of other stuff and maybe 4 girls had no idea this went on and felt like total outcasts). Forewarned is forearmed!
Rob, this is possibly the most sweet, awesome thing ever! You both are wonderful to share! I totally want to rock out to Lady Gaga with Schuyler now!!!
I have an 11 year old and 6 year old and I got the Airbender/Avatar comment right away...and then LOVED the picture of her as a waterbender. My boys love to waterbend in the pool. When I was a kid we called it "splashing".
This is wonderful! Thank you Schuyler for sharing with us. Rob, the comment about wanting her own voice made my heart drop. It is amazing what your kids are truly thinking and never told you because you didn't know to ask. I need to make a questionaire like this for my own kids.
It's true, Beano might need to sponsor the Rum-Hud clan!
Thank you, Rob & Schuyler, for answering all our questions. I loved the whole experience. I hope we get to do it again.
Hope Schuyler is having a great first day of middle school today and I can't wait to see the Medusa costume!
Great answers, Schuyler! Thanks for sharing with all of your dad's (old!) blog readers. Middle school takes some getting used to, my daughter would tell you, but it gets better and easier the longer you're there! I can tell that you and your dad and mom have a great relationship -- that makes you all lucky to have one another.
I have been folooLowing this blog for quite some time now, but have never commented. What a greatvexperience for your followers to getbto know a more personal piece of Schuyler. I really enjoyed it. The hairs on my arm stood straight up when Schuyler Talked about the pinkessa giving her a "real voice". Have you seen the Ted Talk recently with Roger Ebert and how they worked with a technology firm to create a computer voice that replicated his actual voice from before he had cancer by using thousands and thousands of sound bytes from when he was recorded speaking on his shows etc. and they made it accessible on his computer? That talk is one of my favorite Ted Talks. I hope you consider listening to it or maybe letting Shuyler watch it too. It is very inspirational.
Thank you, Schuyler!! Though I don't believe that your mama poots. I am a mama and I keep telling my kids that it's not possible for me to ever poot or burp because moms never do anything gross. Maybe the dog has gas?
Also you mentioned wanting a bird. My son has a pet bird and they are best friends! She loves to sit inside his shirt and peek her head out to see where they're going. She is so cute. Taming her took a few months of but she acts like a very friendly dog now. Birds are awesome pets!
Rob and Julie -- Have you seen any of Roger Ebert talking about seeking a way to use his own voice with his device? He lost his ability to speak and he doesn't like any of the device voices. He is in the process of working with a company that will use old clips of him speaking to try and make a BBOW with his voice.
Fascinating stuff, though it is heartbreaking to hear him talk about the distance he feels between himself and others now. I don't know where the technology is or what it would cost but it would be amazing to sample Julie's voice and then raise the pitch just a wee bit to give Schuyler a voice that's more Schuyleriffic than the stock voices that are available.
She's just a lovely, sweet girl. We're all lucky to know her.
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