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Archive for September, 2010

Smokey the Bear, Aaron, and a joke

Smokey the Bear and Aaron

Aaron and Smoky hanging out in community room

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.

Aaron uses cards to calm himself

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)

Old McDonald and a Linchpin

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

Rainbow of Veggies
Creative Commons License 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:

“There is no spoon?” Disability style

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

rustic chicken soup with reflective spoon 2
Creative Commons License 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”

“The Host” vs Home Stagers vs Aaron

centipede head
Creative Commons License photo credit: KlemenRobnik

As promised in Day 3 of the blogging challenge: “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/