Archive for September, 2010

Retarded–no more.

Sept. 22, 2010 The US House of Representatives has unanimously approved a bill to replace the term “mental retardation” and “mentally retarded” with “intellectual disability” and “individual with an intellectual disability.” The Senate previously passed this bill. President Obama is expected to sign the legislation into law.

This is a triumph for all of us, but especially for people with disabilities, their parents and families who have carried the burden of the word retarded.

Below is one of the press releases/alerts I received from the group of parents of children with disabilities and advocates Our Children Left Behind and The Autism National Committee.

Tomorrow I want to talk about the role of parents and advocates in making a difference in our world and getting legislation passed. Rosa’s bill is named after a young woman with Down syndrome, you can bet her mom was involved.

But today I just wanted to show what a great press release and call to action looks like. So no need for phone calls–the bill is passed.

Comment

What are the components of this press release that would make you want to take action? no action?

Just for transparency, I support this bill and have been a member of Aut-Com and followed Our Children Left Behind almost since they began.

Keep Climbing: Onward and Upward

All the best,

Mary

Here is some information from the advocacy group, “Our Children Left Behind.” Posted by: “Alpy2@aol.com” Tue Sep 21, 2010 7:57 pm (PDT)

Hi, all! This is from Jessica Butler, long time advocate and mom of a child with a disability. Legislation has passed the US Senate (“Rosa’s Law”) that would eliminate the use of the “R” word (“retarded”) with the less loaded term of “intellectual disability.” We believe this change would help eliminate the stigma currently associated with the “R” word, and this law would cost NO money to implement.

If you agree, please make a quick call to your U.S. (federal)
representative (see instructions below), and please share – thanks!

(The Senate has passed this bill but the US House still needs to – if it’s not passed before the end of the legislative term, the process will have to start all over again from the beginning in the next term.)

FROM JESSICA BUTLER – PERMISSION TO FORWARD/REPOST FREELY:

As the year winds down, we’ve all talked and debated many important policy matters. You’ve heard a lot about restraint/ seclusion/aversives, and you will be hearing more about legislation regarding these dangerous techniques. We’ve all called Congress about recovering expert witness fees, Buckhannon, unlevel playing fields, and woefully inadequate educations that do little to prepare children with disabilities to succeed (much less go to college or earn a living).

But as you sip your morning coffee, tea, or Mountain Dew, I’d like to try to convince you to make one more call to Congress– a short call for human dignity. The Senate has passed Rosa’s law (S.2781), a bill to replace “mental retardation” in our federal laws with “intellectual disability.” Now, it’s time to ask your Representative to do the same.

Maybe this isn’t as big a deal as all the other kinds of legislation. But as WE know, “retarded” is used as a slur, demeaning and denigrating to 6 million adults and children in America. The stereotypes associated with the “R” word connote the slamming door of “can’t” more than the hopefulness of “can” which encourages people to teach children with intellectual disabilities to succeed. Even some of our archaic restraint/seclusion practices are premised on outdated stereotypes that children with intellectual disabilities cannot understand anything else.

Eliminating the “R word” may not cure the stereotypes, but it will help bring society closer to realizing that people with intellectual disabilities are part of all of us. Of course, it’s hard to eliminate it when our core disabilities laws use it. Nearly 1/2 million children with IEPs are categorized as “mentally retarded.”

S.2781, Rosa’s Law, would change all of this. It will replace “mental retardation” and “mentally retarded” with “intellectual disability” in our federal laws. These include the Individuals with Disabilities Education Act, Elementary and Secondary Education Act (the law formerly known as No Child Left Behind), Rehabilitation Act, Public Health Service Act, Health Research and Health Services Amendments and a number of other health and disability laws. S. 2781 will also update federal regulations.

Some people think this bill is silly or wasteful; many of us do not.

It’s about dignity for people with intellectual disabilities.

Rosa’s Law will not impact services, rights or educational opportunities for people with intellectual disabilities. It just replaces one phrase with another; everything else stays the same. It will not cost any money. Federal Regulations and Statute Prints will be updated on the same schedule they always are. The bill will not force states to change their own laws if they do not want to. Rosa’s Law is a bipartisan bill, it was cosponsored by Senators Mike Enzi (R-WY), Richard Burr (R-NC), Barbara Boxer (D-CA), Barbara Mikulski (D-MD), and 40 other Senators from both parties. The Senate passed the bill last month and sent it to the House.

But now the legislative session is winding down. To make S. 2781 a
federal law, the House of Representatives must pass it. If the House does not, we start all over again next year…..from the very beginning.

INSTRUCTIONS FOR CALLING YOUR REPRESENTATIVE. Please take 5 minutes and call your Congressional Representative. Ask him/her to support S.2781. Dial 202-224-3121 (TTY 202-225-1904). Ask for the aide who handles disability or health care. If you get voicemail, please leave a detailed message. You can also find direct dial numbers on your Representative’s webpage at _http://www.house.gov_ (http://www.house.gov/) . If you do not know who your Congressional Representative is, go to _http://www.house.gov_ (http://www.house.gov/) and put your zip code into the box in the upper left corner. (You usually only need your five digit zip code, even though it asks for 9.)

It is much much better to make a call, because Congress is so busy in the final weeks that reading email will be delayed. If you cannot call due to disability or other severe constraints, please send an email but perhaps ask a friend to also make a call. Email can be sent through _http://www.house.gov/writerep_ (http://www.house.gov/writerep) .

Everyone should call your own Representative. But it’s particularly
important to call your Representative if he/she is on the House Education and Labor Committee (see _http://edlabor.house.gov/about/members/_ (http://edlabor.house.gov/about/members/) for a list of members) or House Energy and Commerce Committee ((for a list of members, go to _http://bit.ly/dfws6B_ (http://bit.ly/dfws6B) or go to _http://energycommerce.house.gov/_ (http://energycommerce.house.gov/) and click on About and then Members) or in the House leadership. Energy & Commerce handles the federal health laws, which Rosa’s bill will also update. If your Representative is on Energy & Commerce, please ask for the Energy & Commerce aide. Tell this aide this is why the Committee has the bill and ask them to support it. Both committees must approve the bill to send it on to the full House.

Perhaps Rosa’s Law is a small change, but it is one that will say a lot about our national cultural attitude toward people with intellectual disabilities. Updating our federal laws will not eliminate stereotyping or low expectations for children with intellectual disabilities, but it is a step in the right direction. It’s a way to make sure America’s laws stand up for human dignity rather than archaic terms.

More info on the web: S.2781, Rosa’s Law in full:
_http://www.govtrack.us/congress/bill.xpd?bill=s111-2781_
(http://www.govtrack.us/congress/bill.xpd?bill=s111-2781) .
Statement of Senator Mikulski (D-MD), Sen. Harkin (D-IA) and Sen. Enzi (R-WY) upon introducing the bill: http://mikulski.senate.gov/record.cfm?id=325272_ (http://mikulski.senate.gov/record.cfm?id=325272)

I wish you a great week. I hope you’ll join me in taking 5 minutes out to call your Congressional Representative and ask him/her to pass S.2781, Rosa’s Law. It’s a simple bill and an easy call to make. You have all you need above. If you agree with me, make a call and send this message on to 5 friends (or 20 or 50).

It’s a step for Human Dignity.

Thanks,
Jess

Jessica Butler
Congressional Affairs Coordinator
Autism National Committee (_www.autcom.org_ (http://www.autcom.org/) )
Former Chair, COPAA Board of Directors (2007-08)
_jessicabutler@ymail.com_ (mailto:jessicabutler@ymail.com)
permission to forward is freely granted.

Sandy, Illinois (alpy2@aol.com)
Our Children Left Behind (http://www.ourchildrenleftbehind.com)
(volunteers protecting special needs students through legislative and policy advocacy-join us!)
For other OCLB sites and our archives, check out:
ezBoard (archives) – http://p078.ezboard.com/bourchildrenleftbehind
blog – http://oclb.blogspot.com/
MySpace – http://www.myspace.com/oclb_team
Twitter – http://www.twitter.com/OCLB
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Smokey the Bear and Aaron

This year, Smokey the Bear celebrates his 65th birthday.

Last weekend, as our family was trying to keep our house available to prospective buyers, we took a road-trip to Clifty Falls State Park in Indiana. (click here for related post)

Between the community room and the dining room we caught up with the “Only YOU can prevent forest fires” celebrity in this bigger-than-life woodcarving of Smokey the Bear.

It is hard to know what Aaron knows and doesn’t know, but he went to check out Smokey and it reminded me of one of the most amazing moments in Aaron’s and all of our lives.

Escalante, Utah

Around 1991 Aaron was about 16 years old and Tommy 14. We were driving from Escalante National Monument on one of our famous/infamous summer vacations. Check out America the Beautiful for another of our trips (click here).

We had just fixed breakfast on our trusty Coleman stove, packed up the camper and were traveling on All American Hwy 12 to meet my sister in Moab, Utah. It was ferocious hot.

This area is so remote, it could have its picture next to the word in the dictionary. Think canyons, dust, dirt, and sky. We stopped at the traffic light in this one red-light town of Escalante.

Suddenly, a police car pulls up in front of us and blocks our car. Then, as only can happen in a small town, a full blown parade starts up the street. We thought it was hysterical but figured the kids would enjoy it, so we got out of our car and joined others who were gathering on the sidewalk.

The parade certainly wasn’t because we rolled into town, but whatever the occasion the hometown parade had the Boy Scouts, a hay wagon full of kids, fire trucks, the High School Marching Band …. There was even a vehicle from the nearby National Park.

We were watching all the excitement when, low and behold, a six foot Smokey the Bear mascot surprised us. Smokey shakes Tommy’s hand, turns and reaches for Aaron’s hand.

“Who are you?”

In a voice as clear as the mountain sky, Aaron says, “Who are you?”

Now, we all know Smokey is also non-verbal. But he laughed, gave Aaron a hug and moved on to the other kids.

Tom, Tommy and I were gobsmacked that Aaron had talked. “Who are you?” clear as a bell, I’m talking Big Ben kind of ring.

Now, unless you understand how amazing it was for Aaron to say this sentence, you wouldn’t know why–25 years later–this is still a transformational moment and one of the most significant memories of my life.

Remember, the psychologists tested Aaron and pronounced he had an IQ of about minus 15 and a vocabulary of “ball, bus, shoe” and mostly echolalic phrases like: “You Okay?” “Ready, set, go” over and over and over and over. Plus, according to the definition of autism, Aaron is not supposed to be able to pretend, to see things from another’s point of view….

So for Aaron to spontaneously ask, “Who are you?” means he was smarter than we ever guessed.

1. Aaron’s certainly seen characters in costume at King’s Island park, Halloween…. He knew someone was inside this big furry costume.

2. Aaron’s surprise and curiosity somehow bypassed his usual communication block or aphasia or whatever stops him.

3. A Question is a higher form of intelligence and verbal communication.

4. Since his pronunciation and delivery was perfect, his problems are NOT that he couldn’t produce the sounds or words. So for all those years of speech therapy we were on the wrong track to get him to practice saying, “ssss” and “rrrrrr”.

So, with no prompts, no year of therapy identifying a “Smokey Bear picture” and practicing his “wwww” sounds to then build those smallest phonemes into the word “who”… Aaron just looks at Smokey and asks, “Who are you?”

I’m not sure I can explain how this affected how we looked at Aaron’s intelligence and communication skills. I’m not sure I can even explain the impact of the experience. But it does keep me awake nights with other questions like,

What other mysteries can Aaron tell us about who he is and this thing named autism?

Why could Aaron never again say those words? Never.

In Aaron’s whole life, we’ve only had a similar experience one other time. For the curious, it was when a police officer pulled me over for speeding and Aaron looked at the officer and said, “Uh, oh”.

Still cracks me up and took the sting out of the ticket… but that’s another story.

Joke

Aaron carries playing cards around with him. He licks them (like in picture), shuffles them, counts them… They are another way he can calm himself. I debated using this picture. I want you to like Aaron and it is risky to show him doing something others would perceive as bizarre. Licking cards is not normal. But, it is a step up from biting his hand and one of my goals of this blog is to tell it like it is, so here’s his picture. I was looking at this picture when the old kindergarten teacher in me thought this would make a great joke.

I imagine Aaron asking, “What is Smokey the Bear’s favorite card game? (answer in the comments)

Tricky eh, I want you to go to the comments and tell us one of your stories about Smokey the Bear? A joke? What experiences have you had with spontaneous communication, vacations?

Keep Climbing: Onward and Upward.

All the Best,

Mary

Check out my challenge partner Alison Golden of The Secret Life of a Warrior Woman: (click here)

The Realtor had two showings for Sunday, so we figured the best way to see Aaron and keep a clean house (see related post) was to go for a Fall vacation.

Aaron, Tom and I made our get-away-from-moving trip was to Clifty Falls State Park in Indiana. The weather was perfect, the ride up the Ohio was perfect, Aaron was perfect. Whew!

When your child has a severe disability and doesn’t talk with words, you look for ways to measure his happiness and enjoyment by other non-verbal signs.

Over the years, Tom and I have decided it is by the number of times Aaron crosses his leg.

I caught two on film (do they still call digital, film?)

Check it out:

NOTE: I’m congratulating myself for figuring out how to download, edit and post my pics in under two hours. I’m a slow learner, but I’m learning. Now, with another hour or so, I might be able to figure out how to put the pictures side-by-side. Or not?

More about the trip tomorrow in Smokey the Bear and Aaron.

Keep Climbing: Onward and Upward.

All the Best,
Mary

Check out my challenge partner Alison Golden of The Secret Life of a Warrior Woman: (click here)

Comments:
Where do you like to go to get away?
How do your children communicate without words?

Day 7 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge Follow us on Twitter #CB30BC

photo credit: 2KoP

Last week I stopped at a tiny produce stand at the edge of a corn field (Ohio). It sold an unusual assortment of fruits, vegetables, bakery goods, crafts….

Grandpa Farmer said the corn was picked this morning from his field but the other things were from all over. The blackberries and peaches were part of a cooperative exchange with a family farm in Georgia–local truckers just added his shipment to their usual transport loads and made an extra stop at the farm in the towns they passed. He said he also barters an exchange of his corn and melons for fresh baked goods from a local restaurant (Der Dutchman).

What I thought was remarkable was that even in 2010 and the days of social media and networking, these family farmers were still exchanging goods and services the old fashioned way. Their B-to-B (business to business) offline business model was still built on personal relationships and trust. Getting fresh products to individual customers. Going the extra mile, literally.

Community Inclusion

There were about five shoppers there at the time I was there. None of us knew each other, none of us really even gave each other eye contact. But, we all probably lived within a short distance of each other.

In older times this would have been an important social time to exchange family and community news. This face-to-face exchange also made it easier for people with disabilities to be included in the community. It took people with all sorts of skills to work at the farm and stores, and they were each a person connected to families and neighbors–not just strange strangers.

Other than my questions, there was no conversation other than Grandpa Farmer asking us to “pay with the smallest bills possible.”

But while this was typical B-to-C (business to consumer) social behavior for 2010, considering the centuries old social and business exchange model of corn for blackberries, corn for snickerdoodle cookies, I was feeling nostalgic and wishing for the past face-to-face friendly social interactions of an ancient marketsquare and a community where people actually knew and cared about each other.

Seth Godin, the marketing and social media guru wrote a book called Linchpin: Are you indespensable? (Penguin, 2010) about the power of one person to make a difference, be remarkable.

If this farmer really understood this, he could have been the Linchpin, he could have made shopping at the produce stand a different experience than shopping at the large superstore where the produce looks great but there are no plows, wagons or rows of corn anywhere in sight. He missed his opportunity to build relationships and make his customers loyal friends instead of just people who were asked to pay with small bills.

So I guess my takeaway is that online or offline, the way we communicate and build our business model, deliver products, interact with our neighbors and customers can be personal or impersonal. The method of delivery, the social media is not what makes the difference.

PEOPLE MAKE THE DIFFERENCE.

The Aaron difference

Most people say my son Aaron, who has the label of autism has few social skills. In fact, some experts would say people with autism cannot even have social interactions, that is the definition of autism. But I’d be willing to bet if Aaron had been with me, while we were at the produce stand he would have sang, “Old McDonald” a hundred times and gotten everyone there to join in. Everyone there would be smiling by the time they left. Aaron would have given them a personal and memorable experience. Aaron would have been the Linchpin. He would have made sure everyone connected.

Comments Please:

Who are the Linchpins in your life? Who is so indispensable that your life would be different without them?

Keep Climbing: Onward and Upward.

All the best,

Mary

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In case you missed it:

Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)

Day 2: Memory Rocks: not being objective (click here).

Day 3: Turning it over to the professionals (click here)

Day 4: An Avalanche and an Aaron story (click here)

Day 5: “The Host” vs. the Home Stagers vs. Aaron (click here)

Day 6: “There is no spoon?” Disability Style (click here)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman: