Posts Tagged ‘parents of people with autism’

Norm Kunc

Every day people challenge me:

Why do I believe what I believe?

What’s wrong with the Medical Model?

What’s wrong with the Charity Model?

What’s the big deal about “normalization” and “inclusion”?

Why is “special” not special?

Most times the conversations are stressful–the whole paradigm shift thingy. Most people don’t want to take the time to understand or learn a whole new way of looking at the world. They think their view of the world is just fine, thank you very much.

As parents, we have been learning for 30-40 years, our child’s whole lifetime. Our child demands we still learn every day.

For the next couple days, I’m going to be sharing some of the people who shaped my beliefs. Here is Norm Kunc.

I am hoping they can deliver the message of “normalization” far better than I ever could.

Norm Kunc changes lives.

I would spend the whole year teaching university students and teachers about the need for inclusion, normalization, self-advocacy, people first… and they would nod their heads (or scratch their heads at the crazy lady), pass their tests, and go on with the way they always did things.

Norm Kunc came to campus, spoke to these same students and in fifteen minutes–he rocked their world.

That quick–his message is that powerful.

Here is Norm and Emma Kunc’s website. I’ll write more about them in another post, but if you get a chance book them or attend one of their presentations. It will change your life.

Here is Norm’s Credo of Support. It is not the same as hearing him in person, but the video message shows the power of words and the talents of self-advocates. When Norm introduces the video he says the words just poured out of his heart.

Here’s hoping it touches your heart too.

Keep Climbing: Onward and Upward

Mary

Talk about it!

What did you think of the Credo of Support? Do you think the message is stronger coming from self-advocates? What is your personal credo? Can you think of ways people with disabilities can give their own message?

Would you like to hear more about Norm and his wife Emma’s work?

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

Autism Day at the Opera

April is Autism Awareness month. April 2nd is designted World Autism Awareness Day by the United Nations General Assembly.

World Autism Awareness | Gone Amuck

For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.

My son is 36, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.

For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”

Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.

How will Autism Awareness Day impact the lives of people with autism and their families?

For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.

Put Time and Money where your Mouth is

It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.

Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.

I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.

The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really.

Action–not Hype

Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.

I’m just tired of being used and being the victims of charity.

Past Experiences with the Charity Model and hype

One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”

Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.

The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.

As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.

The young man shook his head,

“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”

Real People–Not Causes

At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.

If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.

Make the Autism Awareness Day, more than a media moment.

Take the opportunity to begin change–one on one.

Keep Climbing: Onward and Upward
All my best,

Mary

What do you think?

Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?