Posts Tagged ‘AAC’

Being able to communicate is like winning the lottery.

Do you start out the day asking, “What is my purpose?”

Sometimes that question will motivate me. Sometimes it is whispered in anger or despair; sometimes as a prayer for direction. But I wonder how I would ask about my purpose in life– if I could not speak with my voice. Like most people, I take so much for granted.

How would I feel if no one ever listened or thought I had anything important to say?

Perhaps you have already seen these videos on YouTube, but they are new to me. In the comments I hope you will share what you think, did these videos communicate new ideas, new questions, rock your world, move you to actions?????

Being able to communicate is like winning the lottery.

We usually think about winning money when we think about winning the lottery. But what would be more precious than money?

Andrew is a 13 year old young man who has the label of autism. He is communicating by pointing a pencil to a letter stencil board made by his grandfather. Andrew and his mom have been communicating this way for over 4 years. Notice how they pass the pencil as each takes a turn communicating.

Andrew: Non verbal autism + communication Part 1

Part 1: Script

Mom (M): I thought it would be interesting if you could talk a little bit about the difference that being able to communicate has impacted your life—like if you could not communicate and now that you can communicate.

Andrew (A): Yes. Now that I am using the letter board my life is having more meaning.
Since I was a little boy what I really wanted was to be treated as a normal boy
with pieces of my sensory system out of functioning.

M: Can you talk some more about that?

A: All autistics think

What is my purpose if no one thinks I can learn?

Then my mom found I am learning more… (con’t in part 2)

Part 2

Part 2: Script

A: …then she thought.

M: This is good keep going. This is really good.

A: You see all autistics have motor issues that limit their ability to communicate.

M: Keep on. You need to move your elbow, pick it up.

A: So once I had a new way to communicate

M: Keep going.

A: I felt like a kind of Lottery Winner in Life.

M: That’s a good way to put it.

A: So now I’m hoping to graduate from high school and lead a fulfilling life.

M: So, if you had any words of wisdom for parents and your teachers, what would you say?

A: See each individual as a respecting individual who deserves to have an education and live in their communities as productive citizens.
.

The Right to Communicate

The right to communicate is the means by which all other rights are realized and is, in itself, a basic human right. (TASH resolution on the Right to Communicate.)

When I watch these videos, I am struck with how much we can learn from people with autism. The classic definition of autism talks about “difficulties in social interaction, social communication, and stereotypical behaviors.” But as Bob Williams wrote so brilliantly in his poem “What if,” maybe the difficulty in communication is our problem.

There have been many breakthroughs in communication showcased by The Wretches and Jabberers movie and new technology like the IPad and new applications.

Call to Action

My son Aaron used to type when he was in high school. Then, he graduated and his facilitator moved away and he didn’t want to type with me, his mom. But now we’re taking action. We hope to begin Aaron’s augmented communication again this month. It’s time.

We’re going to be getting an IPad and some applications. If you have any advice, let me know.

Share your thoughts:

Some people still think this is all a hoax. Some people think it is a miracle.

What do you think?

What did you think of the videos of Andrew and his mom? Do you think Andrew was really communicating? Do you think Andrew is smart? Was his mom manipulating him? Is there any person you know who might be able to better communicate with some technology?
Do you agree that the right to communicate is the most basic of human rights?

If you couldn’t talk, would you think being able to communicate was like winning the lottery?

Keep Climbing: Onward and Upward
All my best,
Mary

Related Posts:

Wretches and Jabberers| “A lifetime of trying to get in touch”

More than a Graduation Speech: Jeremy Sicile

Wretches and Jabberers| A jab to the heart

Mary’s poem about facilitated communication

Bob Williams and Advocates at White House

BOB WILLIAMS

Bob Williams is currently the Special Assistant to the Director of the D.C. Department on Disability Services.

Bob served in the Clinton Administration as Deputy Assistant Secretary for Disability, Aging and Longterm Policy at the U.S. Dept of Health and Human Services, Washington, D.C.

I bet Bob had to program that title into an automatic response button on his augmented communication device *smile*. It would take way too long to say, much less spell out letter by letter.

Because Bob has cerebral palsy and doesn’t speak with words, he knows the importance of augmented and alternative communication.

He wrote the TASH resolution on “The Right to Communicate” (click here).

“What if???”

I first met Bob Williams when we were both serving on the TASH Board of Directors. At first, he seems shy but don’t be fooled–his power is in his message.

Below is a poem he wrote when Facilitated Communication first opened the communication door for many people with autism, including Aaron.

What if???

What if
autism is a mistake?

Someone else’s
mistake?

Ours;
not theirs.

What if
autism really is…

Flawed communication?

More ours
than theirs.

What if
the Truth

Suddenly all came
gushing out

LIke vinegar spray
or electric shock
from a Sibis*?

What if
they started handing out Nobels

For humanity’s
inhumanity?

Who do you think
would win more?

Us or them?

What if
autism is a mistake?

Someone else’s
mistake.

Bob Williams

(*The Sibis helmet gives electric shocks to force compliance.)

If you have any doubt about the power of communication, check out Bob Williams as he talks about the ADA and “presumed competence.” In (about) minute 4 of the video he talks about the need for technology to assist in communication.

Health and Disability

Here is a speech Bob gave on Health and Disability (click here).

Linchpin

Bob would be what Seth Godin calls a “linchpin.” He is remarkable and “pokes the box.” He has influenced the President of the United States; laws like ADA, IDEA and the technology act; national policy; parents, self-advocates and everyone he meets. The world is a better place because of Bob Williams.

Keep Climbing: Onward and Upward
All my best,

Mary

Comment:

Did you feel the passion and power of the poem? Any other “What ifs???” in your life? What did you think as you watched the Bob Williams video? Did this make you want to try just a little harder to communicate with people who don’t talk with words?

Related Post: The Right to Communicate| Wretches and Jabberers

Blake Roberts an expert on DECtalk programming

Do You Hear What I Hear?

Do You See What I See?

In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2011.

Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.

‘Tis a Season of Magic

Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.

Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.

The result is poetry in motion.

Enjoy!

Do You Hear What I Hear? |Music and Visual Art

http://pastorsnoopi.twigs76.com/songs/DO YOU HEAR WHAT I HEAR.mp3

In Blake’s Words:

Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.

Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.

My friend Snoopi is the same Snoopi you know on Facebook.

Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.

I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.

In summary, programming Dectalk is my favorite thing to do. Blake

More information about Blake and Snoopi:

Click here for http://pastorsnoopi.twigs76.com/”> for an article about this unique team.

If you would like to contact Blake Roberts go to: beroberts@hughes.net

If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at dectalk@aol.com.

The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.

Keep Climbing and Singing: Onward and Upward
All my best,

Mary

What do you hear? See? Think? Want to discuss?

What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?

Tracy and Larry in Japan

Wretches & Jabberers Is A Nationwide Hit!

Wretches and Jabberers is a movie about Tracy Thresher and Larry Bissonnette, two men with autism, as they embark on a global quest to change attitudes about disability and intelligence while promoting the importance of presuming competence.

Wretches & Jabberers opened nationwide on April 2nd in 10 U.S. cities: New York City, NY; Los Angeles, CA; Washington, DC; Philadelphia, PA; Kansas City, KS; San Diego, CA; Denver, CO; Dallas, TX; Columbus, OH & Miami, FL. Six of the 10 cities SOLD OUT, while others were at near-capacity!

GREATER CINCINNATI April 16.
Wretches and Jabberers will begin at noon on Saturday April 16th at the Newport on the Levy AMC Theatre. To buy tickets for Saturday’s show or other cities click here.

Nora Jones, Carly Simon, Judy Collins and more…

If you can’t attend the movie, perhaps you can still support Autism Awareness Month and The Autism Society.Click here to BUY THE SOUNDTRACK ON ITUNES I have also heard the Soundtrack is available at Barnes and Noble Stores.

The soundtrack features 20 original songs written and produced by J. Ralph in collaboration with: Antony, Devendra Banhart, Paul Brady, Bonnie Bramlett, Vashti Bunyan, Martin Carthy, Judy Collins, Lila Downs, Vincent Gallo, David Garza, Ben Harper, Scarlett Johansson, Nic Jones, Norah Jones, Leah Siegel, Carly Simon, Stephen Stills, Ben Taylor & Bob Weir.

Carly Simon: The Letter

“I’ve spent a lifetime trying to get in touch”

LYRICS: The Letter

Did I tell you
Sorry it took so long
I’ve spent a lifetime
Trying to get in touch

Just wrote you a letter
For the very first time
I mailed it to you
Did it arrive

I keep a diary that no one can see
It’s got no gold key or paper at all
I filled those pages through all my ages
With all that I’ve seen and all that I’ve learned

I wrote to tell you
Today I got a dog
I named her Hazel
Just like your mom

She loves swimming around
Out there in the fog
She’s really happy
She reminds me so much of you

I keep a diary that no one can see
It’s got no gold key or paper at all
I filled those pages through all my ages
With all that I’ve seen and all that I’ve learned

Check out what people have been saying about Wretches & Jabberers:

Gerardine Wurzburg’s Wretches & Jabberers may be the best film you’ll see on a subject you probably want to avoid — although you’d be wrong about that. Yes, it’s a documentary about autism but it’s also nearly perfect in doing what an advocacy doc should do: show rather than tell, entertain rather than preach. If this is your first exposure to the world of autism, it will be an eye opener. Kirk Honeycutt, Hollywood Reporter

When Tracy Thresher has something to say, he uses his right index finger – and a special computer that gives voice to what he types. Hunched over the device, he begins. Tap, tap, tap. Tap, tap, tap. Tap, tap, tap, tap…. Autism silences the 43-year-old Vermont man. He doesn’t speak. But he has a message for the world about how people should think of people like him. So he taps it out.”To think intelligence, even if you see wacky, goofy behavior. We are simply intelligence, shown in a different way,” comes the robotic voice, broadcast out of his computer… John Curran, Associated Press

Wretches and Jabberers Explodes Myths About Autism.

The new documentary Wretches & Jabberers follows the journey of two autistic men—Larry Bissonnette, 52, an artist; Tracy Thresher, 42, an advocate—as they travel the world, attempt to banish the myths about autism, and reveal its global face. PARADE spoke to the pair behind the film—Academy-Award-winning director/producer Gerry Wurzburg and co-producer Douglas Biklen, Dean of the School of Education at Syracuse University. Joanne Chen, Parade Magazine

Wretches and Jabberers is a buddy movie, a road trip movie and a moving adventure. But this new film is different than your typical mainstream fare. The documentary stars two autistic friends and advocates who do most of their communicating through typing. The story follows Larry Bissonnette and Tracy Thresher, as well as their assistants Pascal Cheng and Harvey Lavoy, as they travel around the world, meet other autistic people, and advocate for autism rights. John Hockenberry “The Take Away Radio Show.”

For more information about Wretches and Jabberers read The Right to Communicate Part 1

And Larry’s Blog with more of his thoughts and stories.

Summary:

I can’t wait to take Aaron to see the movie this Saturday. As an added bonus, the new Director of the Day Program for Goodwill/Easter Seals is going to go with us. I have to say, this is the first time since Aaron graduated from High School that I am hopeful Aaron will begin to communicate again with facilitated communication (FC).

I am reminded of the quote from the early days of FC:

“Not being able to speak, is not the same as not having anything to say.”

But I’m preparing myself.

Aaron has not used his communication system in over 10 years. Ever since his facilitator moved away and …. long story.

I have been so moved by Larry and Tracy, my faith in Doug Biklen, the W&J trailer, the songs from the Soundtrack and the pre-publication publicity.

Sometimes a movie, a song, a story about hope and a lifetime of endurance is so moving it can take your words away: “Being able to speak, doesn’t mean you will find the right words.” Yep, I’m one of the Jabberers.

Keep Climbing: Onward and Upward

Mary

Parts of this were quoted from the Wretches and Jabberers Newsletter: Volume 8 (April 2011)

Comment:

Please add your voice to this story:

What phrase in the song, The Letter, did you find the most powerful? Will you see the movie, buy the Soundtrack, or otherwise support Autism Awareness month? Can you imagine what not being able to speak with words must be like? Anything else you want to add?