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Archive for June, 2012

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,

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

“Superstar Dads”| Changing the World

My Superstars

Happy Father’s Day Dad!

Anyone can be a Father, but only someone special can be a Dad. (anon.)

“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)

What is a Father’s “unconditional love”?

Many people have trouble explaining “unconditional love” and “fathers.”

I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment and made our hearts burst with love and pride.

But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.

Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.

Here is today’s example:

Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.

Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.

Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.

Sure, as we celebrate Father’s Day, we’ll give Dad a couple little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.

Happy Father’s Day Dad! We love you unconditionally too.

Amplify the positive outliers

This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do and then “give them a platform, a microphone and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.

In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day (wasting) programs, even a new segregated “handicap only” baseball field. These are downright depressing and steal our energy and spirit.

So let’s begin thinking of positive examples and naming our “positive deviants.” In fact, most of the advocates and parents I know would like to be called a “positive deviant”—Yep, fits our label system just fine? Maybe we should be pushing the psychologists to adding that to the DSM, might make better reading than saying parents are still stuck in the grief cycle, eh?

Inspirational Video of people who changed the world

Enjoy this one minute of thinking about “The Crazy Ones” who helped change the world. If I was making a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”

Some of the other Superstars in our life who would be in my video are: Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett, Leanne Bowling, Alison Ford and many others.

Join in the Fun

This post is dedicated to all the Superstar Dads out there who are changing the world.

In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?

Keep Climbing: Onward and Upward

All my best,

Related Posts:

Dad and our trip to Indiana

Parents and Advocates Never Give Up

Hope for Families

Ed Roberts| Be extraordinary