Smokey the Bear, Aaron, and a joke

Smokey the Bear and Aaron

Aaron and Smoky hanging out in the community room

In 2018 Smokey the Bear celebrated 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 a 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 was 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 ferociously 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, and 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, on 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 were 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 getting 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 at night 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 the 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, and vacations?

Keep Climbing: Onward and Upward.

All the Best,

Mary

What would you do?|Case of Shoes on the Wrong Feet

In the last post, What would you do? | In The Case of the Lourdes holy water, I asked for your advice. Here are my next questions:

DAY 39/365: Laced Up
Creative Commons License photo credit: dcosand

What do you do when you go to pick up your child from their home with residencial services and find problems with their personal appearance?

True Story 1: Shoes

Scenario A

We walk in the front door to pick up Aaron, smile at him, and then ask the caregiver, “Are Aaron’s shoes on the wrong feet?”

My husband and I trade “looks,” sit next to Aaron on the couch and change his shoes.

What do we say to the staff person?

Scenario B

What do we do if Aaron’s housemate is the one with his shoes on the wrong feet?

True Story 2: Socks

We are helping Aaron undress at night. We untie, take off his shoes and find out his socks are turned upside down. The heel of the sock is squished up near the top of his foot causing a red mark. The sock has a grey area clearly showing where the heel of the foot is supposed to go, but it is on the top of his foot.

What do we say to the staff person?

True Story 3: Red Marks on Face

We give Aaron our biggest smiles as we walk in the front door of his house and immediately notice there are red marks near his nose, mouth and the sides of his face.

Mom says, “Aaron has red marks on his face, how did that happen?”

A staff person says, “I saw that, I’m not sure what that is, but I put some cream on his face.”

Mom goes over and traces the marks on Aaron’s face, “Gee, it looks like a scrape or burns.”

Staff is still sitting in her chair, but has put down her cell phone.

Dad says, “It looks like a scrape or burn from a razor. Which razor did you use, the electric razor or straight razor?”

The staff answers she used the straight razor.

Dad asks, “Did you use shaving cream? Was the razor dull?”

The staff person gets very defensive and swears it was a new razor and she used the shaving cream.

So, what would you do?

True Story 4: Roommate’s shirt

We are undressing Aaron for his bath. We notice the t-shirt he is wearing is too tight, we can hardly get the shirt over his head. Aaron bites his hand and is clearly aggravated. When we check, the t-shirt has Aaron’s roommate’s initials inside the collar.

So, what to do?

Aaron, our 36 year old son with the label of autism, has lived in a house with another man for over thirteen years. They have a 24/7 staff person who has the responsibility for his shower, grooming, dressing, and all self-help areas.

These examples have happened not once, not twice, but in the last thirteen years, many times. Again, this was on days when the staff knew we were coming. Who knows how many times Aaron went to his day program with shoes on the wrong feet? How many Saturdays has he been dressed in uncomfortable clothing.

So, what to do?

In the comments please share your thoughts and ask your social networks of Twitter, Facebook, etc. if they have any answers.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. What would you say to Aaron? To the staff person? To Aaron’s case worker? To the administration of the company providing residential services? To anyone else?

What attitudes and messages does this convey for the individual, the family, and/or the culture?

You can’t fire a person because of upside-down socks—so how do you resolve this? How many times do you forgive these mistakes before you give them the boot?

As a parent, how do you choose your battles for advocacy? After all, these people take care of your child every day.

Keep Climbing: Onward and Upward,

All my best,

Mary

Related Articles:

Home: More than a Place

Caregivers Part 1

Caregivers Part 2

Caregivers Part 3

There is no spoon| Disability Style

Old McDonald and a Linchpin

Rainbow of Veggies
Creative Commons License photo credit: 2KoP

One sunny day, I stopped at a tiny produce stand at the edge of a cornfield (Ohio). It sold an unusual assortment of fruits, vegetables, bakery goods, and 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, and 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, and corn for snickerdoodle cookies, I was feeling nostalgic and wishing for the past face-to-face friendly social interactions of an ancient market square 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 indispensable? (Penguin, 2010) about the power of one person to make a difference, and 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 small bills.

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

Functional Curriculum: use it or lose it

To celebrate the new school year here are some of my favorite posts:

Article 1: Why Do We Go to School?

Article 2: Back to School| A New Year of Learning

Article 3: Back to School| What is Inclusion?

Aaron learning money skills

Aaron learning money skills to use in store

Functional Curriculum

When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old, he went to the bank and grocery one day a week as part of his special education school program. Here is a short video with Dr. Lou Brown.

This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:

* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff

* it takes lots of practice, so let’s give the student lots of opportunities and trials

* use it or lose it, so let’s make sure the skill is something the student will need their whole life

* transition from school to adult life will be smoother

* we only teach skills that if the person didn’t do it, someone else would have to do it for them

* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life

The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.

In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple of items for that group lunch. These items were purchased with the classroom credit card.

This functional curriculum was based on the philosophy that Aaron would go to the grocery for the rest of his life. Before the school year started the IEP team decided this was a high-priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)

Related Service Staff

The curriculum was designed by the IEP team including specialists and parents. After all, who would be taking the student to the grocery on the weekends, in summer, and after school? And who knew what the student liked better than their parents?

I was in the school a lot and went on many of community training trips with Aaron and his class.

It takes a Village

The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger…

The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right), and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket…

The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)…

Depending on the therapist’s schedule, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.

The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items, and put them in the cart, learning appropriate social skills…

After High School

Unfortunately, now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.

So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).

Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.

Choices: Quality of Life and “If Only”

If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunity to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.

The reason I could insist on these skills being taught and used when Aaron was school-age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personnel. There is no such mandate for Adult Services and no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.

As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences as I can.

And of course, I’ll dream of the day I am Queen of the Universe. *smile*

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts

Building Community| One grocery trip at a time

It’s a Jungle out there| Inclusion in the grocery store

Kill the Turkeys! Life Lessons for People with disabilities