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
—–

Week 2. Day 9 of our Chris Brogan Every-Day-For-30-Days Blogging Challenge

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)

Day 8 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge

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

————————————————-
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:

Day 6 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge
Follow us on Twitter #CB30BC

“Spoon boy: Do not try and bend the spoon. That’s impossible. Instead… only try to realize the truth.
Neo: What truth?
Spoon boy: There is no spoon.
Neo: There is no spoon?
Spoon boy: Then you’ll see, that it is not the spoon that bends, it is only yourself. Only try to realize the truth. There is no spoon.
(Polish subtitles: hey, the more diversity the better.)

“There is no spoon?”-Disability style

photo credit: wintersoul1 Last Sunday I went to pick up Aaron at his house. I told the caregiver we were going out to lunch, but–no surprise–she forgot. So Aaron and his housemate were sitting at the kitchen table eating soup and grilled cheese sandwiches. Now, soup and grilled cheese are lunch classics, so no problem there.

But, in one glance, I could see both these men were struggling with the soup because they were eating it with teaspoons. Both have lots of motor issues, and both would put soup on the tiny spoon and lose most of it by the time it got close to their mouths.

This particular staff person is from another country and we have had problems with her just not understanding things ie. she used shaving cream with the electric razor– ruining the $100 shaver and confusing Aaron. She is also the one who didn’t think you needed shampoo to wash hair…. So, I’m thinking, maybe she doesn’t know any better, it’s a cultural thing or something. (Okay, I’m really silently reading her the riot act.)

I nonchalantly go over to the kitchen drawer and figure I’ll just give them bigger spoons.

But, NO SPOONS. Not even a bent one. (Where’s the bald spoon boy when you need him?)

In fact, there is only one knife in the drawer and about three forks. I look around, but they don’t have a dishwasher, and the dish drainer holds no silverware, so I wonder where in the world is the last set of silverware I bought for the house? How do they keep losing silverware?

“Realize the truth.”

Deciding it was an impossible situation, I just left with Aaron and took him to a restaurant for lunch, like we planned in the first place.

“What truth?”

1. Do I report this to Aaron’s care-coordinator and let her handle it? (case worker)

2. Do I ask the head staff person? (Except she works there four days a week and certainly would know there is no silverware.)

3. Do I ask everyone what happened to the silverware and make a big deal about them being … maybe irresponsible? or untrustworthy? (After all, Aaron lives better off than some of the staff and things have disappeared before.)

4. Could this be a situation like a previous backpack issue?
One Sept. I bought Aaron two backpacks because they were on sale and he usually loses one or it gets so torn up he needs a new one by January, when they are expensive and hard to find. When the staff person saw Aaron had two, she took one to a person in another house where she worked because that person didn’t have any. So maybe this silverware thing is the same. Maybe the people with disabilities in another house didn’t even have teaspoons? So, in an institutional–all things belong to all people and we think of the greater good–the staff person decided Aaron had more silverware than the other person so all’s fair.

5. ???? (This is the kind of stuff that keeps me up at night)

“It is not the spoon that bends, it is only yourself”

So, what to do? How do I solve this problem and upset as few people as possible?

Everyone says–and I mean everyone–I am too involved in Aaron’s life and just need to let the staff do their job. Certainly the parents of Aaron’s housemate don’t even see things like the spoons or the rags they use for towels, or the fact that the light-bulbs don’t work in the living room lamps.

But this is for Aaron–how could I just ignore this?

Not sure if this was right, but the next day when I brought Aaron back to his house, I just slipped a couple knives and bigger spoons into the kitchen drawer. Didn’t say a word.

Now next week, St. Vincent’s Thrift Store has everything half-off on the first Monday of every month. I’m betting I can find a good deal on a whole set of silverware–or at least more spoons. I can probably find a couple better towels for everyone too.

I’ll slip over to the house during the day when no one is home, put them away and … bet no one even wonders where the silverware came from.

But I’ll know, and Aaron’s life will be better for it. And that is enough.

Matrix World meets Disability World

I’ve read the lesson of the Matrix is that the physical world is all an illusion and if we just free our minds, problems are not as bad as we think. In Disability World, we can free our minds all we want, but it would be an illusion if we believed things are not as bad as we think–they are. But love and actions are better than illusions.

Comments Please:

What would you do? Any similar stories?

Keep Climbing: Onward and Upward.

All the best,

Mary

————————————————-
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: (click here)

Day 5: (click here)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman:“Disabled in Waiting”

Day 5 of the 30-Day-Every-Day Blogging Challenge

photo credit: KlemenRobnikAs promised in Day 3′s: “Turning it over to the professionals”– here is the slimy squiggly creature that crawls up necks.)

The Host

Like most people, I read The Host because it was written by Stephanie Meyer of Twilight fame. It had the great plot twists, character arcs and world building I expected. But The Host also gave me thoughtful surprises.

In The Host, an intelligent species of slimy aliens look at the chaos on earth and think it needs a complete makeover. The aliens invade Earth to bring peace, serenity, cure diseases and bring order to the rampant violence and corruption they see destroying the planet. The heroine Wanda (Wanderer) is surgically implanted in Melanie, her host’s body. But Melanie is a rebel who refuses to voluntarily surrender her body and life to Wanda. (spoiler) Wanda and Melanie learn from each other. Wanda learns even though these humans live in a violent world, she and the other aliens are now violently destroying their human spirits, relationships and what makes them unique in the galaxy.

The whole story is about understanding what is human? Can do-gooders cause harm? Is chaos really okay? How can human friendships and emotions be judged? Can differences be a good thing?

The Host by Stephanie Meyer, New York: Little, Brown and Company 2008.

The Home Stagers

Our Realtor recommended we allow professional House Stagers to work their magic on our first floor. And yes, we probably had too much stuff. No, I take that back. Of course we had too much stuff.

The next week, two lovely ladies came and spent over 4 hours on just the LR/DR room and kitchen. Just like on TV, they went through the house and pulled a couple pieces of furniture–Love seat, glass coffee table, and one chair and moved everything else out.

If you are interested in seeing the final product you can see our condo on their website and BTW: it is still for sale (bet you were wondering if I would get the sales pitch in?) (click here and check it out)

The ladies removed all personal pictures and items, took down the calendar and pen, put away the rugs, grandma’s china, as well as the toaster and coffeepot. You get the idea. They stripped the rooms and now (“as research suggests”) have just a few pieces which are nondescript and allow the prospective buyer to see the view of the golf course–our biggest selling point and envision themselves living here with their stuff. This house is supposed to no longer be our house. It is now just a shell (the host) where we live until we can move on and claim a new home.

Aaron

Here is where I just start laughing. We purposely didn’t bring Aaron home overnight for the first three weeks. We picked him up at his house, went to Tommy’s house for dinner, or a restaurant, or the park, but we stayed away from this staged perfect house, which was ours–but not ours. After all, Tom and I were having a hard enough time hiding our dirty laundry in the closet, making sure the kitchen garbage can was discretely unseen in the garage, and … whoever invented glass coffee tables? That person should be sent to a far off planet.

The rose fades

After a couple weeks, living in a show room window was real old. After all, we can’t keep Aaron completely out of the house. He is not really a person for crowded places. We have to live, right?

So Aaron walks in the living room, goes to the spot where his chair and books have been for the last 10 years. Of course, that spot has been cleared “to create a better walking path for the prospective buyers.”

Aaron stops, pauses, and then looks at me like, “WTF, where’s my chair?” So he bites his hand.

Moving on, he goes to find his usual stash of books by the fireplace. When he sees they are gone too, he says, “You okay?” (Which is his way of wanting us to ask him if he is okay, (because he clearly isn’t).

When I give him some books, some ice tea and quickly redirect him to the patio he repeats, “You Okay?” for the next half an hour. I mean this literally until you think you are going to tear your ears off your head–about 30 times each minute. That is a l-o-t of, “You, Okay?”s.

Plan B

So this weekend we are taking Aaron to a state park to spend the night. We’ll take him swimming and give him some extra attention. We’ll be in a different setting. I think we will all enjoy the time away and the peace of mind the house will stay in its perfect condition with no humans to mess it up.

Takeaway:

1. Say a prayer we sell the house. Just got word someone will actually be viewing it. This will solve some immediate problems, though it will open others.

2. I have to wonder about the comparison about the aliens from The Host taking over the lives of their host and the way the Realtor and House Stagers have essentially taken over our lives.

3. Fortunately this is temporary. But every time I go to mark something on our non-existent calendar, or find my spaghetti pot which was considered clutter and is now in storage, I wonder.

Conclusion:

Like the questions I asked after reading The Host, I now question the Home Stagers stripping away the personal and human items to simplify, remove the clutter and chaos. Are they actually substituting more stress and chaos in our lives? As I talked about in the Day 2 and 3, do buyers want to see what is human and makes us unique so they can then add their spirit to this living space? Or is a sort of surgical removal to sterilize the environment really better?

I know what Aaron would say. I think I know what Wanda and Melanie would say.

TELL US YOUR OPINION: What do you say?

In this moving example and from other experiences in your life: What is human? Can do-gooders cause harm? Is chaos really okay? Are human friendships and emotions better than a world where everyone’s emotions are the same? Can differences be a good thing?

Tomorrow: I’ll be back on Monday. Right now I need to pack our stuff to go out of town so our house looks unlived in. So someone else can decide if they want to live in it. And this makes sense, why?

BTW: In my research about The Host, I found out it was made into a movie. So, I definitely want to see it, but of course our DVD player was considered clutter too and is in one of the boxes in storage. Humm, maybe the aliens have invaded.

Keep Climbing: Onward and Upward.

All the best,

Mary

————————————————-
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)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman is blogging about today at http://alisongolden.com/

Day 4 of the 30-Day-Every-Day Blogging Challenge has been a challenge indeed.

Sorry to everyone who got bombarded by 17 posts about “Memory Rocks”. I wasn’t really throwing rocks and boulders at you:)

Becke wondered if there was an avalanche; Ana thought the computer just got too excited about the new tech stuff and was throwing-up (can you tell she’s around babies); Sue suggested it was the hic-cups; Joe, Char, Mar, Kathy and Daphne… also sent kind messages and pep talks. Thanks dear friends for your overwhelming support. It helps to laugh and know things could be worse.

The funny part is my email service Microsoft Office Outlook is also down today. So, the technology gods must be mad at me, or something. Guess this is one of those–pay your dues–kind of days.

Whew! Turns out I’ve spent most of the day talking with the experts to try and figure out how to send ONE notice to my blog subscribers. Just one–not 17.

Isn’t it ironic the system fell apart on the day I blogged about “Leaving it to the professionals”? Bet a comedian would have a field day with this one.

So, tomorrow, I hope to get everything together. Right now, I’m going to go take a walk…or maybe a nap…or maybe… just climb some damn mountain and throw some rocks. Right?

One story: Ten years ago on the day we moved into this condo, we brought all Aaron’s stuff from his old room. He was about 25 years old at the time and had spent the previous 18 years in the same bedroom. We transitioned his stuff and played in his room before he went to bed. He was tired and went right to sleep. Things were looking pretty good.

Tom and I were exhausted and were sleeping soundly until about 3 AM. At that time, I looked up and found Aaron standing over me at the side of the bed. When I sat up, he handed me his shoes.

Now remember, this is a kid who hardly uses any words. But this night, he looks me right in the eye and says, “Go Home.”

Got to say, he communicated his message right into my heart. He did know more about the move than we gave him credit for. He knew this wasn’t home and in the middle of the night you are supposed to be “home”!

Aaron adjusted and now he loves to sit outside on our patio and watch the golfers go by in their funny white carts. We have a big umbrella to keep him from being sunburned. He looks at his books and drinks an ice tea and, when he is really relaxed–he will cross his legs. His sure tell sign of contentment.

Our system in this house is set. I don’t know where we will be moving. I don’t know what Aaron will think of our next house.

We will do the ecological inventory, the advanced planning, the teaching of new skills and transition as necessary. And somehow Aaron will adapt. And we will adapt too.

Aaron hasn’t said the phrase, “Go Home” since that first night ten years ago. I wonder what he will do this time?

Enjoy your day everyone.

Keep Climbing: Onward and Upward

All the best. Mary

Today was so bad, I’m not sure you’ll want to comment. But, if you do, let the rocks roll…

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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 Memory Rocks: not being objective (click here).

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

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman is blogging about today at http://alisongolden.com/

Day 3 of the 30-Day-Every-Day Blogging Challenge

Tom and I have sold three of our previous homes ourselves. But with the economy, the time of year, the fact our condo is in a private community… we decided to turn it over to the professionals.

Don’t know about you, but every parent of a kid with a disability feels slimy squiggly worms climbing up their necks at the phrase, “Turn it over to the professionals.”

Don’t get me wrong, some of my best friends are professionals. *laugh, had to add that*

What I’ve learned from my experiences as a mother?

I don’t like to mistrust people or cause problems. I don’t enjoy confrontation. I don’t think my way is the only way. It’s no fun to continually question the rules. But…

People with disabilities and their families have been the victims of the experts. We have seen them change their minds, make stuff up, be flat-out wrong (remember refrigerator mothers and institutions…) So, I am skeptical of experts, research, and all professionals. Including Realtors.

Do Realtors conduct scientific research?

The dominant research paradigm in our culture requires we disprove the “null hypothesis” to find the new truth or fact. The scientific method demands testing under strict guidelines, then in additional studies, all findings must be duplicated with similar results. (Hey, I didn’t take all those research classes for nothing.)

So maybe some “Research Realtor” (say that three times fast) set up double-blind studies, evaluated the statistics and made scientifically unbiased conclusions. But, maybe all this objective advice about removing all personal pictures and hiding the coffee pot is nonsense propagated on a TV show? Maybe no one tested it at all. Maybe some company exec. made an arbitrary decision. Don’t know, I haven’t studied the real estate literature.

Just Trust Me.

But don’t you wonder if deciding a one-hour Open House is more effective than a 3 hour Open House is based on pure speculation? Is there quantifiable data proving the internet is the only effective way to advertise? Do the pros navigate their own websites ie. When we typed in our street address on the Realtor’s website, it said, “no such property exists.” Scary.

We parents learned the hard way about authority and trust when researchers insisted on using standardized tests–in multiple choice format–because that was easiest for them to collect data.

Do Realtors now rely almost exclusively on the internet and one-hour open houses because it really is more effective selling houses? Or, to make their personal lives easier? (Hey, no one wants to work Sunday afternoons.)

It’s only one week since our listing–so we need patience. But Tom and I are starting to second-guess our decision and wish we tried to sell our condo ourselves. At least we would be in control, success or not. Our condo at $148,900 is small potatoes to a real estate professional. Yet the $8,000 commission might mean the difference between a sale, and no sale. And $8,000 is what Tom makes in a year working 3 days a week at his job at the golf course.

Once empowered…

One thing about being an advocate and parent of a child with a severe disability is we know about empowerment and self-determination. We have learned to be persistent. We communicate our needs, concerns and keep asking questions. We don’t trust professionals to do their jobs. We question promises, motives and actions. We question…well, everything. That is how we survive.

Not sure if that is good or bad, it is just the way it is. In systems theory we understand everything is connected. What affects one part of the system affects all the parts of the system (click here).

Sorry Realtors, nothing personal, but when you get our listing, you also get our life’s baggage. We act the same for hairdressers, plumbers, and especially for all service delivery services (and I don’t mean Federal Express).

Parents carry battle scars that never heal. And this carries over into all aspects of life.

Your Turn

So, maybe the questions are: Can parents ever be happy? Can we ever trust professionals to do their jobs? What do you think when you “turn it over to the professionals”? Do workshops on self-determination and empowerment help or hinder our relationships?
Do you “Question the Rules”?

Tomorrow: “When Sci-Fi Touches Real Life” a story where the heroine is one of those squiggly worms.

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).

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman is blogging about today at http://alisongolden.com/

Day 2 of the 30-Day-Every-Day Blogging Challenge.

Last weekend Tom and I put our condo on the market. It’s a great condo (click here and check it out) If you buy it, I’ll be your blogging slave for life. (How’s that for an online offer?)

We’re moving to be closer to our kids and deal with health issues I talked about in the post “…the yet-to-be-disabled”(click here).

For the last 10 years, we’ve loved everything about our condo: our neighbors, the location, the resort setting, watching the morning mist on the golf course, and the fact Tom no longer had to rake leaves, cut grass or shovel snow. Tom did choose to nurture his gardens. Pictured is the smaller garden in the front of our condo, there is a much larger one with tomatoes (with old golf clubs as stakes) in the back yard.

In many ways Realtors are like the professionals in “special needs” and “Disability World.” (click here) Like most professionals, it is all about “being objective,” utilizing “best practice” and “scientific research.”

They would look at this garden for its curb appeal. Since I will NEVER be objective, I want to give you an unscientific tour of Tom’s garden.

Over the past ten years he has fertilized, tilled, and built up the soil until it is now rich and hearty. In Ohio, it’s been a dust bowl kind of summer, but Tom’s kept the flowers alive with his devotion and a lot of watering. He grew most of the marigolds and petunias from seed. He’s brought the impatiens back from death several times. He agonized over whether the white flowers would be better positioned between the pink and purple, or the red and pink. The golf flag was a Christmas present from Aaron. We bought the log on a Sunday drive in the country. The rocks are special: each camping trip Tommy and Aaron got to pick a rock to bring back for the garden. There is one from Chief Crazy Horse’s Monument (we bought it-don’t worry). There is one from outside Yellowstone National Park that has the yellow flecks in it. There is one from my sister’s yard in Colorado that caused the bomb squad to detain our luggage. Our neighbor even brought us two rocks from the coast of Maine on his last trip. You get the idea.

This might be “just some flowers” to an objective professional, but every flower, every rock is special. No one will even know a maple tree used to be out front, or we had to advocate with the home owner’s association to place the street light on the street (duh) instead of in the middle of the garden. Who would know a lawn mower propelled one of the rocks through a neighbor’s window. Rather than lose the view of the garden, she chose to redesign her window. Who would ever think the garden has a history and touched so many lives?

Though we can take the rocks and some planters with us, this little garden carries 10 years of memories. Like everything else in our move, it’s never objective–it’s very much personal.

Tomorrow I’ll be blogging about, “Turning it over to the professionals” a phrase which turns the blood of parent’s of kids with disabilities to ice.

Your Turn

What are your experiences? We are all on this life journey together. There are some adventures that just make us human. Share?

Keep Climbing: Onward and Upward.

All the best,

Mary

Alison and I are starting a Twitter hashtag #CB/BC Join us.

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)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman is blogging about today at http://alisongolden.com/

…my 30 Day IBP (Individual Blogging Plan)

Meet Alison Golden, my challenge buddy

The internet drives my husband Tom crazy. I’ll be talking about Alison Golden and he will say, “Who? How do you know her?” I will patiently answer Alison is a world traveler, originally from England, the one who writes a blog called The Secret Life of a Warrior Woman. (Check it out here.) Tom will ask again, “Is she a real person or some mystical cyber-cloud haze?”

Since this happens often I will take a deep breath and say, “Yes, Alison is very real, she now lives in California with her husband and two young kids.”

For those of you over 65 years old, who grew up before there were computers or satellites to give us GPS directions…, you will understand. And yes, Tom still uses maps with yellow highlighters. (Though in his defense, I always trust his directions over GPS.)

I try to straddle the digital divide. I love it when someone as lovely as Alison comes along and says, “Let’s follow Chris Brogan’s advice and do a 30 day blogging challenge to see if we can grow our blogs and increase our traffic.”(click here for the discussion).

Alison and I met during Johnny B. Truant and Lee Stranahan’s Question the Rules course. Warrior Woman meets Mother-with-lots-of-bullet-holes was a natural. Plus Alison is very funny.

Sept. 21 is the Autumn Equinox in the Northern Hemisphere. It is also World Storytelling Day in the Southern Hemisphere. So combining the momentum of a natural balance in the universe and the gift of storytelling it is a perfect day to begin our blogging challenge.

Individual Blogging Plan (IBP)

In true Special Education IEP tradition, here is my IBP (Individual Blogging Plan)

Timeline:

All Goals will be achieved in 30 days starting Sept. 21, 2010

Current Level of Performance:

Climbing Every Mountain is two months old. According to Google Analytics (Assessment tool) my visitors range from a high of twenty a day (2 times) to 0 (1 time). Today, my new AWeber (assessment tool) says there are 15 subscribers. I’ve posted about 2-3 times a week with most posts about 1000 words. Many posts have no comments, “America the Beautiful” has the most comments with 52 (of course half of those are my responses).

30 Day Short Term Goals and Objectives:

1. I will double the number of subscribers (30):

a. Thanking my existing subscribers who are the true believers. *sending kisses* I will ask them to use social media and tell their friends about our blog. *more kisses*

b. Using AWeber, I will figure out how to automatically contact each subscriber when a new post is made. *I know, I know…remember the old part, I’m still learning.*

c. In my posts, I will post a weekly count, and encourage new readers to subscribe.

d. I will learn how to make “bullets” so this is easier for my readers. *did I mention I was the most technologically inept person on the blogosphere?*

2. I will blog everyday

a. I may write shorter posts of 300 – 500 words, instead of the longer 1000 word posts.

b. I will use Photo Dropper, to speed up finding pictures while continuing to learn how to upload pictures from our family photo album and camera.

c. I will have my first guest post and one interview. *this is sooo exciting*

d. I will ask my readers for blog topic suggestions. *What do you need?*

3. I will build an interactive community.

a. If my content is wonderful, readers will comment and share their own stories, help each other solve problems and get connected.

b. If my post topics are useful, the number of comments and linkbacks will increase and we will reach more people.

c. If our community grows, commenters will suggest other related blogs and resources.

Evaluation

At the end of the 30 day challenge, I will ask for feedback from everyone about their experience.

Related Services and Support

1. Alison, my blogging challenge partner.

Alison is going to be my guidepost to help me keep grounded. She is not a special education person so she will have valuable advice. If we believe in inclusion, we need to be able to communicate with people outside our inner circle. She is a blessing as well as a fellow traveler.

2. Technical Support

I’m going to be needing a lot of technical support. But like all special education, we often don’t have what we need so we learn to be “creative,” right?

3. YOU

I’m counting on each one of you to add your suggestions and feedback. Email me any time. marye.ulrich1@gmail.com

Call to Action

Are you going to join us? Even “partially participate” (couldn’t resist) by reading the blogs and telling your friends? Get brave and comment?

Keep Climbing: Onward and Upward
All the best,

Mary

This is day 1 of the Chris Brogan Every-Day-for-30-Days Blogging challenge. See what my challenge partner Alison Golden of The Secret Life of a Warrior Woman: is blogging about today at http://alisongolden.com/