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
————————————————-
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:
by Mary E. Ulrich | Aug 10, 2024
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 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
by Mary E. Ulrich | Aug 9, 2024
photo credit: HA! Designs – Artbyheather
How do you measure what is important?
Hain Ginott, the famous child psychologist and author of classic books like “Between Parents and Child” and “Between Teachers and Child” taught about the power of establishing your own rules. He reasoned the rules helped you communicate your core values and helped you measure your actions.
One of the first articles on this blog was Shouting My Commitment. Where I tell the world exactly where I stand.
Over the years, my rule has been reduced to one sentence:
“Does this action lead toward inclusion, or toward segregation?”
End of Semester, but Beginning of Life.
Here at Climbing Every Mountain, many of our readers are students in Diversity and Disability Study classes at area universities. I hope your time here has been informative, and entertaining and caused you some “cognitive dissonance.”
Cognitive Dissonance
Piaget and other educational theorists say we must have “cognitive dissonance” to challenge our existing paradigm and beliefs–or there can be no change–no evolution in our thinking, no learning.
I received emails when several people disagreed with my last post, “I love Aaron| I hate Autism.” I spoke my truth, it meets my rule–so I am confident in my position. I welcome their “cognitive dissonance” and hope they will continue the discussion–so all of us will learn new things.
Evolving from Student to Teacher
One of the responsibilities of a teacher is to raise issues, even if they are not popular. Sure, you need to be thoughtful and research your topics. Sure, you need to present logical arguments and use real-world examples. Sure, you need to be aware of learning styles and cultural diversity.
At the end of the semester, a student must synthesize all the new information and create her own rules to live by. What will you “prune” away, and what ideas, facts, and theories will now become part of the way you think and act?
If your measuring stick is different than others, this is tricky. Many people will disagree and see things based on their own measuring stick. That’s okay. That’s their right.
WARNING: The more important the topic–the more diversity of opinion.
And, even though it is hard to admit, they might be right. Their opinions might cause you cognitive dissonance and the spiral of learning begins all over again.
Evolving from Student to Teacher to Student
As teachers, you are going to be the advocate for not only yourself but also the children in your care, their parents, the other teachers, the administration, the community, and everyone.
You will have to keep learning, not just for survival, but because you want to keep growing and changing. You will have to find empathy to see things from another’s point of view.
You will have to learn to take baby steps and compromise–often.
Nothing is Perfect. Nothing is totally Pure.
If you are a leader, you will face difficult decisions. You will need to be able to know what you stand for. When to walk away. When to compromise. When to ignore. When to dig in and fight.
Inch by Inch, anything’s a cinch (Schuller)
“Does this lead toward inclusion, or toward segregation?”
This mantra works for me but you will need to find your own. What defines you, your heart, your truth? What is your call to action?
Bronfenbrenner, another educational psychologist, showed us how to think in systems. I’ve written about how this applies to Aaron, my son with the label of autism in a post called The Circles of Life, but want to share some ideas from the system’s theory and my point about moving from segregation to inclusion.
Individual Change
If an individual student with a disability can join general education students at a lunchroom table–this is one inch toward inclusion and away from segregation. It is a move in the direction of inclusion.
Classroom Change
If a colleague differentiates an assignment for a class, so that ALL can participate–we celebrate this step toward inclusion.
School Change
If a policy is changed, and students with disabilities can go on the field trip with their general education class–this is a small step toward inclusion.
Cultural Change
“Disability World” is socially constructed. It can follow the philosophy of a medical model and try to cure the individuals, or it can follow a different philosophy and say the individual is fine, we need to cure the world.
In my opinion, many people want to go back to the medical model. Recent political events demonstrate certain politicians are trying to demonize public employees–especially teachers and take away the programs which support people with disabilities to work, go to school and live in the community.
In my opinion, they want to further their agenda to only teach certain conservative curriculums, dismantle collective bargaining and a teacher’s influence in his/her own class, sabotage the public schools, and create more private/charter schools at public expense. They no longer want to separate church and state.
Using my measure of, “Does this action move toward inclusion, or toward segregation” it clearly moves toward segregation.
As teachers in the 21st century, you are going to be caught in the crossfire. You will need to make choices and decisions.
The administration in private/charter schools can make a rule that says, “We don’t take kids with disabilities.”
Since private/charter schools do not have to follow many of the federal laws this is their right. I believe in the separation of church and state. If a school or church wants to discriminate against people with disabilities — that is America. That is their right. I just don’t agree with it.
Personal Change
You are not going to be able to just ride this one out. YOU are going to have to make choices and decisions.
What rule do you want in your community, your life?
Is this the kind of community and/or school where you want to teach?
Where you will send your children?
Do you want to be forbidden subjects about diversity, science, history, and even basic tenants of democracy and freedom?
Obviously, this is a major discussion. What role do you want to play in the discussion?
Conclusion
I want to invite everyone to continue as members of our Climbing Every Mountain community, and encourage you to make rules that will guide your life.
I wish you well. I wish you courage.
Below is part of a speech Haim Ginott gave to a group of teachers on the first day of school. I find it inspiring, I hope you do too.
Dear Teacher,
I am a survivor of a concentration camp. My eyes saw what no man should witness.
Gas chambers built by learned engineers.
Children poisoned by educated physicians.
Infants killed by trained nurses.
Women and babies shot and burned by high school and college graduates.
So, I am suspicious of education.
My request is that teachers help students become human.
Your efforts must never produce learned monsters, skilled psychopaths, educated Eichmanns.
Reading, writing, arithmetic are important only if they serve to make our children more human…
(Haim Ginott, 1972, Teacher and Child)
Keep Climbing: Onward and Upward
All my best,
Mary
Share your Thoughts
Do you have a bottom line? Can you sum up the rules of your life in one or two sentences? Do you believe in inclusion, do you believe in segregation? It is that simple. Whatever your choice—your actions are more important than your thoughts or words. What did you think of Haim Ginott’s message to “be human”?
