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Communication: “A lottery winner in life”

Being able to communicate is like winning the lottery.

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

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8 Responses to “Communication: “A lottery winner in life””

  • My first thought was ‘How does his mom keep up with his letter pointing?’ I guess she’s got good at it. How can it be a hoax? What a ridiculous idea. But I don’t think it’s a miracle. He is a smart boy with a communication issue. it is quite clear now he has his board, he can communicate with intelligence and a high level of articulation. For him, finding that communication mechanism was the key.
    Alison Golden – The Secret Life of a Warrior Woman recently posted..5 Inspiring and Unconventional Personal Development Blogs You Should Read

    • Mary E. Ulrich says:

      Thanks Alison, but see you respect people–even if they are different. That makes all the difference for some of these people. Some “professionals” don’t want to say they are wrong, or don’t want to have to learn new things. Can you imagine such a smart young man NOT being able to tell us his thoughts? That would be such a tragedy, indeed.

  • Sunshine Bodey says:

    My son types to communicate and I know that not only is it not a hoax, it is not even particularly miraculous. Yes, everday is an unveiling in my house and this is incredible but it is only a recognition that my son has severe motor planning difficulties. In the future, we will be ashamed that we ever questioned the intellect of those with severe autism.

    • Mary E. Ulrich says:

      Good for you Sunshine. When you can feel your son pull your hand toward the letters, it is so obvious. The people in the Deaf community talk about the 100 year war about sign language, I guess we have a similiar battle.

      Why does everything have to be so hard, eh?

      Good luck to you and your son. Let us know how things go.

  • Pamela says:

    I would be a lousy person for Andrew to communicate with, as I struggle with anytype of verbal spelling and he was going to fast for me to recall which letters he selected. I have to see the word printed.

    • Mary E. Ulrich says:

      Good point Pamela. Andrew really was movin’ wasn’t he. What did you think of his mom faciitating the conversation by writing down his words and encouraging him? Would that sort of system help you or someone you know?

      I know there are computer programs that give you a list of choices once you start spelling. Could you use something like that?

      The speech/language specialists and the IT folks can help us with products we don’t even know exist. We need help making practical sense of it all.

  • Wendy says:

    Hi Mary,
    Thank you for the video and story. Finding a system of communication for an individual who has differences can truly make the world a better place for him/her and his/her family and network of support.
    There are some iPad documents on the OCALI website at http://www.ocali.org/project/document_archive
    A Spectrum of Apps for Students on the Spectrum and
    Apps Designed with Disability in Mind.

    There are also no cost Autism Internet Modules about several aspects of communication/social competence available at http://www.autisminternetmodules.org/
    Language and Communication; Functional Communication Training; Picture Exchange Communication System (PECS); Overview of Social Skills Functioning and Programming; Social Narratives; Computer Aided Instruction

    • Mary E. Ulrich says:

      Thanks Wendy. I’ll check them out.

      I’m trying to work with the Easter Seals folks at Aaron’s day program. We need all the information we can get.

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