by Mary E. Ulrich | Oct 15, 2024
Aaron age 8 Tommy age 6
Are they adorable, or what?
Aaron and Tommy always loved Halloween. Me too. The holiday is such a great way to build an inclusive community.
There were some segregated, handicap-only Halloween parties for just kids with autism and developmental disabilities, but I wanted Aaron to be part of his community. With a little preparation and a lot of team effort, it worked.
When Aaron was 8 and Tommy 6 years old we lived in a great neighborhood with lots of kids (click here for a related story) and Halloween was something special.
In the picture above, check out Tommy’s hand. He is holding the ghosts we made and handed out for Trick or Treat.
Task Analysis: Tootsie Pop Ghosts
We took a Tootsie Pop, wrapped a white tissue around the round top, tied it with orange yarn, and with a magic marker added two eyes.
Cute, something homemade and the kids loved them.
Partial Participation
One of the most important concepts in special education is the idea of partial participation. If someone can’t do the whole activity, could they at least partially participate and do some smaller part?
For instance: Aaron, Tommy, and I all worked on the Tootsie Pop Ghosts for a couple of evenings before Halloween.
Aaron’s job was to take the tissue out of the box.
In addition, sometimes he would hold the stick of the Tootsie Roll Pop while Tommy added the tissue. My job was to tie the yarn. It was a team effort, an inclusive experience.
We each did a part of the whole project. We each partially participated.
Aaron contributed what he could. He could pull the tissues out of the tissue box independently.
He could hold the stick with assistance, and only for about a short time. Because he was a valued team member he contributed as long as he could.
Tommy, on the other hand, could have pulled out the tissues as well as most of the rest of the tasks. But what made this activity fun was the fact we all worked together. We wanted everyone to play their part.
Tommy had more skills than Aaron and more tasks in the activity. He got to choose when he did them, but they had to be done before Halloween Day. I could have forced him to finish all the eyes in one sitting–but then it would have been working and Mom’s timeline.
Instead, he got to make his own decision and chose to finish them while he watched The Transformers, Electric Company, and Scooby-Doo on TV–his timeline.
He finished up the ghosts by adding the eyes and jamming the stick of the finished ghost into a shoe box lid so the ghosts would “float.” He chose the time, was self-motivated, and had the satisfaction of seeing the job to the end.
We made enough ghosts so both Aaron and Tommy could take them to their classes at school. They were always a big hit and I think they were proud they worked on them.
Team Effort
On Halloween night, Tommy went with all his friends to a crowd of ghosts, clowns, and monsters. He was gone for hours and filled his pillow sack as full as he could. One of the neighborhood mothers kept an eye out for Tommy.
Usually, Aaron and I would go to the immediate neighbors while Dad manned the front door of our house.
One person could not be in three places at once: with Tommy, with Aaron, and at the front door. We really needed our neighbor, our community resource, to help us out.
Tips, Sensory Issues, and Routines
This particular Halloween Aaron learned about doorbells. We went to each house and I would point so Aaron would know where to press and he would just smile as the ding or ring, or buzz sounded. He had a great time. Cause and effect. Press the button–hear a funny sound.
The neighbors were always very kind and generous because they knew Aaron. If I prompted him with, “Aaron what do you say?” he would respond, “Thank you” and give them a smile. It really was a way they could get to know Aaron and we could build our community relationships.
We only went to about 10 houses because of all the excitement, plus maneuvering the steps and the dark was a lot of sensory stuff to handle. But Aaron really seemed to understand and enjoy the routine: Go to the house…climb up the steps…ring the bell…get candy…say thank you…repeat.
It was a fun night.
Over-Generalization
What wasn’t so fun was the next night. See, Aaron learned the routine really, really well. Too well.
So, the next day guess what? I was busy taking the groceries out of the car, when I looked up Aaron had somehow gotten to the house next door, rang the doorbell, and was waiting for some candy.
It took me longer than my neighbor to figure out what was going on. She just smiled, reached in her extras from the night before, and handed Aaron a chocolate bar. I could have hugged her.
Tommy to the Rescue
Tommy thought the whole scene was hysterical. Our whole family laughed about Aaron’s behavior at the dinner table but we knew we had a problem. How were we going to teach Aaron that Halloween only came one day a year? Why was it okay to do something one day–but not the next?
Tommy came up with the solution. He suggested we put away all the Halloween decorations and candy. And sure enough, it worked. Without all the reminders, Aaron moved on to other things.
Full Circle
This Halloween, Tommy will be taking his baby girl Trick or Treating for the first time. And Aaron, he will be passing out Tootsie Pop ghosts when the neighbor kids come to his house.
Trick or Treat? Comments?
Tell us some of your Halloween stories and memories. Stories of partial participation, over-generalization, community building…
Keep Climbing: Onward and Upward
All my best,
Mary
by Mary E. Ulrich | Oct 1, 2024
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
by Mary E. Ulrich | Sep 1, 2024
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:
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
by Mary E. Ulrich | Aug 15, 2024
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
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In case you missed it:
Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)
Day 2: Memory Rocks: not being objective (click here).
Day 3: Turning it over to the professionals (click here)
Day 4: An Avalanche and an Aaron story (click here)
Day 5: “The Host” vs. the Home Stagers vs. Aaron (click here)
Day 6: “There is no spoon?” Disability Style (click here)
Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman:
