August 24, 2015

Seriously. Just Stop.

Today at Support for Special Needs:
Excerpt: 
Is it fair, taking that word away from you? Don't you have a right to use whatever word you please? Surely brave patriots gave their lives at Lexington and Bunker Hill so that King George the Third couldn't keep you from watching reality TV and saying "This show is so retarded." I don't have an answer for you, because at this point, the question isn't about your rights. It's not. You're an American; you've got the right to say whatever you please. (If you're not an American, then check your local listings, I guess.) You've also got the right to eat that pizza with the hot dogs in the crust or vote for Donald Trump. Being an American means you can do all sorts of horrible things.

August 17, 2015

This Year

Today, at Support for Special Needs:
Excerpt: 
This is going to be the year that Schuyler finds her way. This is going to be the year that no tense meetings will be called and no krakens will be released, a year without confused tears and crippling social anxiety and a father feeling like a failure because his daughter has again slipped into the cracks of the world. This is going to be Schuyler's year.

August 10, 2015

The Girl Unseen

This morning, at Support for Special Needs:
Excerpt: 
More than anyone else I know or have ever known, Schuyler possesses grace. It touches us all. The one thing that I can say for certain is that it's nearly impossible to meet Schuyler and to know her without being fundamentally changed. She has limitations, that is very true, and they are almost certainly more challenging than most people truly understand. But the limitations that hold her back the most are ours, I think. Our inability to grasp the world as she understands it, and our failure to make that world a better place for her. But God, how we are all trying. I'll be trying to do that until my very last living breath.

August 4, 2015

Schuyler Answers

Back in June ("Schuyler Will Now Take Your Questions"), I invited you to submit questions for Schuyler to address in our joint presentation, the first we'd ever given, at the Region 10 Education Service Center's Summer LifeSkills Boot Camp 2015. The presentation took place yesterday, and as I mentioned over at Support for Special Needs, it went really well.

I think it's safe to say that for as long as Schuyler wants to do it, and assuming we're asked to speak again, this will be the format my future presentations will follow, with ever-increeasing participation from Schuyler. She says she's game. (She wants to present in Hawaii. I'm not opposed to this idea.)

As I promised at the time, and of course with her permission, here are some of Schuyler's answers and statements from yesterday's presentation.




INTRODUCTION


Hello, my name is Schuyler Rummel Hudson and I am a tenth grader at Jasper High School. I'd like to talk about my life and tell you why I've been using my devices to help me talk. First I used a HipTalk, then my Vantage, which I called the Big Box of Words, and then my Vantage Lite that I called Pinkessa. Now I use an iPad Mini called the Queen of Monsters with my speaker. I am happy to be here with my father and mother to share my story with all of you.



OBSERVATIONS ON HER AAC CLASS IN ELEMENTARY SCHOOL


In my AAC class at Gulledge, we learned to use a computer, our devices, and to read books. Every day I went to my other classes after the AAC class and used my device in class. Back then, my teachers worked together, but now they don't. Some of my teachers did know how to use my device, and some didn't with my big box of words. Now, most of them understand better than back then. It think it’s because I have an iPad and they know how iPads work. I learned a lot about how to use my devices back then. I don't think I need a class now but I miss being with my other friends who talked like me.



USING HER IPAD


Which app do you use for speech? Why did you choose that app?
LAMP Words for Life, because it works like my old devices, the Vantage, and helps me to talk to others.

What else do you use your iPad for?
Games and movies and drawing and listening to music. I use it to send messages and Facebook.

What are your favorite games?
Monument Valley and Subway Surfers

How do most people who are meeting you for the first time react when you talk with your iPad? Positively, or negatively?
Positively. They think it is cool and ask questions about my iPad.

What is your favorite accent to use on your device?
I use Emma voice with a British accent.

If you could change one thing about your communication device, what would you change?
I like it the way it is. My iPad is not loud but I have a speaker.

Do you notice people treating you differently when you are using an iPad than when you were using the Big Box?
With the Big Box of Words, they think that I am dumb and weird. When I use my iPad, people think I am like anyone else.

How would you explain your speech device to someone who had never seen someone talk like you do before?
It speaks for me because my brain doesn’t want me to talk.

Can you talk a little bit about how you make the choice to use your own voice or use your iPad to communicate? For example, which situations you would never use your iPad and which situations you would always use your iPad?
I sometimes try to talk with my voice first. When people can't understand me, I use my I-pad to talk. I use it at school in class. I also use it to order food when I go out with my parents.



NAVIGATING SCHOOL WITH HER DISABILITY


What are some things that teachers have done that have helped you to have good experiences in the classroom?
I get help with math and science at my school. If I don’t understand the problem, my teachers tell it to me different.

What are some things that teachers did that you didn't like, or that you found unhelpful?
Sometimes they go too fast and they don’t help me.

What is the one thing you hate people presuming about you, before they know you?
They think that I am dumb and weird and I am not smart at all.

What has been your favorite thing about school?
Meeting new friends and teachers. I like to learn new stuff. I like playing percussion in the Jasper Marching Band.

What is your least favorite thing about school?
Homework

(Accompanying slide)


ON BEING SCHUYLER


What do you plan to do after high school?
I think I am going to travel to Hawaii and China. I want to get married and get a job.

What is your favorite movie? Why?
I have a lot of favorite movies, it's hard to pick. I like Jurassic World and Godzilla and Pacific Rim. The movie I’ve liked the longest time is King Kong. That will always be my favorite movie. I like monster movies with my dad.



What is your favorite thing to do for fun?
Play the Wii U with my parents. I also like to swim and play soccer and baseball in Miracle League.

What made you decide to dye your hair?
I want to be different but I want to pick how I’m different.

Who do you see as your role models or people you really admire?
Amelia Earhart and Stephen Hawking

What do you want to do in the future?
Maybe to help sick children and the poor and people like me with little monsters of their own.

If you could tell people one thing about your little monster, what would you tell them?
It makes it hard to talk and sometimes it makes it hard to understand things. My monster is a butthead!

If you could tell your little monster one thing, what would it be?
Get out of my head!

What kind of music do you listen to? What is your favorite song?
I have a lot of favorite songs, it is hard to choose one. Right now I like Waiting for Superman and Black Widow and Release Me. My favorite artists are Lady Gaga and Florence and the Machine and Selena Gomez.

I'd like to know, what do you like about Plano and the Dallas/Fort Worth area?
I like Six Flags, the Dallas Opera, Hawaiian Falls, Mexican food, and the zoo.

If you moved away, where would you like to live?
England or Hawaii or Vermont.

Do you see yourself becoming a writer like your dad one day?
Sometimes. I like to write stories and poems.

What do you like to learn about?
Art and science

What is your favorite season and why?
Summer, because I can see my dad's friends and have fun and swim!

What is the best Halloween costume you have worn?
I have a lot of favorites. Medusa and Amelia Earhart and Brunhilde the Valkyrie.

(Accompanying slide)
What skill do you want to improve?
Listening and being a percussionist who plays the drums.

If you had a ton of money, what would you do?
I would travel and see the animals in Africa.

What is your best personality trait?
I am funny and always happy and a good dresser.

What do you love about your life?
Having the awesome parents and the best friends too.

What is one thing you thought people would ask you but no one did?
No one asks about my favorite monster.

There was an answer to that question, too...

A Partnership

This morning at Support for Special Needs:
Excerpt: 
You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

July 27, 2015

Rough Numbers

Today at Support for Special Needs:
Excerpt: 
The article suggests that with the passage of the ADA, many were led to believe that the struggle for disability rights was over, when in fact it was just beginning. It's more like people with disabilities who have been fighting for equality were finally told "We recognize the battle you've been waging, now here's a bazooka." Or perhaps more accurately, "Here's a rock."

July 20, 2015

Steps and Stumbles

Today at Support for Special Needs:
Excerpt: 
How do you discipline a kid for whom her own actions are as inexplicable to her as they are to you? How do you move forward when the lessons built into the situation haven't been learned, by any of the parties involved? How do you face a future where your kid's independence is due to be recognized by the law far earlier than is appropriate, or even feasible? And how far should you go to take pieces of that legal independence away from them? You can tell yourself it's for their own good, and you can even mean it and be completely correct, but that doesn't diminish the feeling that you're taking something precious away and stealing from them the thing that they, and you, have always valued and dreamed of the most.

July 13, 2015

Twelve Years

Today at Support for Special Needs:
Excerpt: 
Schuyler's monster doesn't have a proper birthday. Perhaps it could be said to share Schuyler's. Even that doesn't feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn't yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.