Climbing Every Mountain
A Base Camp for Parents and Caregivers of People with Disabilities

America the Beautiful| Through the Autism Car Window

by | Jun 1, 2023

Hi Everyone. Getting ready for a vacation? Thought you might like to read about the family trip that changed our lives.

Sitting on the top of the world

We just need Julie Andrews in the picture:)

Oh, Beautiful for spacious skies…

From the moment I was pregnant, my husband Tom dreamed of the day he could retrace his childhood trip out west. He glowed in the memories of mom, dad, and kids studying the maps on the kitchen table, packing the lunch meat sandwiches in the cooler, and repeating the rest-stop conspiracy of Dad throwing the baseball high over his boys’ heads so they would chase the ball and use up some of that stored energy. The year our son Aaron was ten and his brother Tommy turned nine, faithful to Ulrich family tradition, we headed west. The main difference between my husband’s family, and ours, was that Aaron has autism.

Preparing for the trip

Aaron didn’t start walking until he was five, and even at ten was not completely independent in the bathroom. So how were we going to follow his needed routines for toileting, understand Aaron’s wants without the use of words or signs, watch his balance issues, and especially, cope with unpredictable behaviors? How were we going to manage twenty-one days of camping, sleeping, eating, and interacting with strangers in strange places? How were we going to survive–much less enjoy–visiting eleven National Parks and Monuments, twelve states, Mexico, and traveling five thousand miles?

Certainly, we were not the first family to attempt a western vacation with a child with complex needs, but we also knew we were not going to be “typical” tourists. Tom and I briefly considered leaving Aaron with a friend or in summer camp, but we decided this dream vacation included our “whole family.” We would make it work.

Adaptations and Accommodations

What could be more All-American?

Using our teaching and parenting skills, we designed adaptations and accommodations for the trip. In previous years we camped in state parks and all shared a big tent. Aaron had a terrible time sleeping on the ground in such close quarters and often our sleeping bags got soaked in rainstorms, so for this adventure, we decided to buy a pop-up camper. Our pediatrician recommended some medication to help Aaron relax and sleep at night. We planned to follow Aaron’s schedule for meals, breaks, and sleep. We would only visit restaurants at non-peak hours, choose corner tables, avoid long waits, and skip most museums. We installed a child-proof lock on the car door and had a suitcase of games, music and snacks. Tommy and Aaron’s jobs on the trip were to crank up the camper each night and help carry the water buckets–jobs that were successful in our previous trips.

Oh Beautiful for pilgrim feet…

Like the pioneers of old, and Tom’s family a generation earlier, at dawn our family set out from Cincinnati with Tommy’s version of a “Colorado or Bust” sign taped to the windshield, driving not oxen-pulling-a-Prairie-Schooner, but a brown-station-wagon-pulling-a-pop-up-camper. We were confident we could handle any of the challenges we knew would come. We would enjoy our family time and see the beauty of America. And fortunately, instead of mud and rock trails, we had interstate roads and could travel sixty MPH.

We Americans like to brag about being the melting pot and/or salad bowl of the world, a nation that values brotherhood and diversity.

Even with our best preparation, instead of a three-week vacation, this became a three-week teaching excursion. It seems the human America was not quite ready for us.

At home we were surrounded by people who know us; they saw the beauty in Aaron and our family. With the strangers we met on our journey, we had both negative and positive interactions.

Transformational Experiences, day after day

As if we had a disease, one family packed up their tent and moved it to a site on the other side of the campground, and a pregnant woman crossed the street so she wouldn’t have to pass us.

One evening Aaron was enjoying the loud echoes that he could make in the campground bathhouse, and a young boy ran out screaming, “The Hulk, the Hulk’s in there!”

An elderly man said, “We have one of ‘those’ in our family but he doesn’t travel, he lives in a home.”

“Mom, what’s wrong with that boy? Does he act that way on purpose?” The mother whispered, “SHHH, he’s retarded,” and like we were dangerous, yanked the child’s arm and dragged him away.

“Have you tried the Feingold or gluten-free diet?” or, “I know an allergist in Illinois who can get kids like that to talk.” It seems many people think they have the right to offer advice. I am sure they think they are helping, but do they really think we were so desperate we needed a consultation standing in line at the grocery? We struggle with the question: Can Aaron ever be accepted just the way he is, or does he only have value if he is “fixed” or “cured”?

In Arizona, we were asked to leave a family-style restaurant because, as the manager said, “We don’t serve people like him.” Tom and I were shocked because Aaron was happily eating his pancakes. If he had been noisy, we would have understood, but he was acting as normal as anyone. Sobbing, I hurried Aaron to the car wondering what we were going to do a thousand miles from home. I realized this was the lowest point of the trip and saw a glimpse of the discrimination that has followed individuals of other ethnic and racial groups. The stigma of being asked to leave a restaurant because some anonymous person didn’t like the way my son “looked,” and the management’s open prejudice presented an uncomfortable dark side of America I will never forget.

Oh, Beautiful for heroes proved…

Our trip would have been devastating if only bad things happened, but we actually had some very positive experiences.

People would ask with smiles, “Where are you from?”, “Where did he get that red hair?” or “How old is he?” Just ordinary questions, but kind gestures and communication starters.

A parent of a child with Down syndrome commented, “I hope the programs in Ohio are better than in Missouri.”

One young girl smiled at us, “We have special kids in our school. My best friend’s name is Brian, he reminds me of him.”

Several children sought out seats next to Aaron and Tommy on a park swing, maybe just for a closer look, but they made eye contact and tried to make Aaron smile. Several gently pushed Aaron on the playground swings, merry-go-round, and gave him a turn kicking the soccer ball.

Aaron pinched me when we were rocking violently on a small plane sight-seeing ride over the Grand Canyon, the pilot said: “Don’t worry, I’ve had grown men reach over and hold my arm.”

At one roadside park, all the visitors collectively held their breath as Aaron climbed the steps up a steep slide. Tommy guided him to the top where after much arm-flapping and nervous hand-biting, Aaron finally let go. As the wind struck his face and he barreled down the slide, Aaron’s expression was one of absolute joy. Everyone in the park clapped and cheered. This was not just a glorious moment for Aaron; this was a glorious moment for every person in the park.

In a swimming pool in Arizona, a lifeguard got in the water during her break and showed Aaron how to swim on his back.

On a train ride in Silverton, CO a little girl moved into the seat next to Aaron and taught him an adapted version of the game Connect Four.

A waiter in Mexico brought Aaron an extra pack of crackers while we waited for our meal and tried to entertain him by singing Old McDonald in broken English. He even helped cut up Aaron’s food. His empathy and understanding crossed national and language barriers.

Universal Design and Inclusion

In the National Parks, we found many examples of universal design: accessible water fountains, paved paths, and self-guided tours enabled us to partially participate in the park activities. Several of the campground managers gave us campsites close to the restrooms. At Carlsbad Caverns, New Mexico there were benches and a bypass for the steep climbs. A small work crew with disabilities in Grand Canyon National Park did yard work, and a waitress at Canyon De Chelly used sign language to take an order from a customer. These inclusive accommodations not only made it easier on us, they actually made us feel welcome.

Survival means Adapting to the Environment

We were ambitious. We flew above the Grand Canyon and went down in the caves of New Mexico. We had a lovely lunch at the Broadmore Hotel with water goblets and doilies but were asked to leave a family-style restaurant. We drove to the top of Pike’s Peak and the whole family climbed the ladders of Mesa Verde’s Cliff Palace. We saw Native Americans adapt and survive their desert environment by seeing the value of every living plant and creature. We tasted jelly and saw sewing needles made from a cactus. We heard wolves howling, and we howled back singing every song we knew around the campfire. We took pictures and made memories that will last a lifetime. And perhaps like the Native Americans who live in the desert, we were learning how to adapt to our environment.

Lessons from the Road

We were physically and emotionally exhausted. Many amazing things happened that brought our family closer together. At the same time, though, I feel Tom, Tommy, Aaron and I crossed the line.

We could no longer think of ourselves as a family with one member who happened to have a disability; we were truly a “disabled family.”

I am not trying to be shocking or dramatic. We just had to concede that most of the general public did not seem to have the motivation, information or skills to assimilate us into their version of a “typical family.”

We also learned we had no anonymity; we stood out even in the largest group. Five hundred people came to see the bats fly out of Carlsbad Caverns, but because of Aaron’s shout when the bats emerged; four hundred ninety-nine people were looking at us.

We learned that celebrating the diversity of the landscape of America includes seeing the beauty of the diversity of its people.

Planting Appleseeds

Our experiences reinforced our commitment to the inclusion of people with disabilities to live, work, recreate, and go to school with their neighbors, brothers, and sisters. We cherished the positive experiences; the children we met gave us so much hope for the next generation of Americans, and travelers. Like Johnny Appleseed on his trips out west, we tried to drop positive seeds that other pioneer families will nurture and see bear fruit. Perhaps a future Kodak moment for our country will include not only the beautiful American landscapes but people like Aaron and our family.

Better than “The Buck Stops Here”

One last story: In Missouri, inside the Truman Memorial Museum with its high ceilings and big rooms, Aaron started, “vocalizing.” Oh, how it echoed. The guard came up to us and said either Aaron would have to be quiet or leave. Tom started to go when another tourist came running from across the room. He looked the guard right in the eye and said, “How dare you speak to them like that. That young man is a citizen of this country and has a right to be here. Harry Truman was a strong supporter of the ordinary person. He, of all people, would want them to be here.”

As we pulled the car into our driveway, Tom and I were wondering if it was worth it. Would we ever take another road trip? But like always, our children showed us the way. As he was running into the house to be the first person in the bathroom, Tommy called over his shoulder, “Next year I want to go to Florida!”

And crown thy good with brotherhood, from sea to shining sea!

Add your voice:

Be sure to leave a comment and let me know about your travel adventures. Is it harder when you are away from home and your typical routine?

Keep Climbing: Onward and Upward

All the best,
Mary
–
Copyright Ulrich 2000-2022
Original Work do not copy without Permission

Nursing and Caring: 1945 vs. 2023

by | May 24, 2023

Pittsburgh Hospital School of Nursing Class of 1968
Creative Commons License photo credit: nursing pins

Nursing and Caring during WWII

My mom became a nurse during WW II. One of her first assignments involved going into the homes of elderly people in the Washington, DC area. Many of these older Americans were by themselves because their adult children were serving in the war. These were regular patients she saw every week and she would give them their shots, medication, baths, change bandages… whatever they needed. Mom told stories about how her best medicine was often listening. They were scared and lonely and she would read the precious letters that came from faraway places and help them write back. One afternoon she was with an elderly couple when the military officers told them their son had been killed in action. She gave each person personal attention and dignity.

Her patients were personal. She knew them and their stories. She cared about them as individuals.

After each home visit, she and her companion (they traveled in twos) would take the bus or trolley cars back to the dorm where all the nurses lived. She had to wash, press, and starch her uniform (this was before modern washers and dryers), she had to write her reports (longhand with a pen) and she had to make sure she was inside the dorm before 10 PM or she would be marked a fallen woman and unworthy to be a nurse.

After the war, she married my dad and had five children in six years, with another child 4 years later–six children total in 10 years. When the children were all school-age, she again became a part-time ER and Recovery Room nurse.

Nursing and Caring in 2010

Mom always loved hospitals and everything medical. Even now at 88 years old, she remembers the names and doses of each of her 15+ medications. She tries to remember the nursing staff but there are too many of them.

This afternoon I stayed in her room while a steady stream of professionals did the prep work for her hip replacement surgery. They had her IV running; she was given preventative medicine for vomiting and acid reflux. She had one tube taped into her artery so that during the surgery additional meds could be given without needle pricks. Everything was plastic, disposable, and sterile.

Everything was Impersonal

Each of the medical professionals seemed competent and efficient. They explained the procedures, they reassured her that her doctor was the best; they had amazing machines that beeped and whirled. But, even with me standing there, no one cared who mom was. She was the “hip replacement in room 424.”

Again, this was a state-of-the-art hospital with excellent nurses. Everyone was super nice and competent. On the bulletin board near her bed “Helen” was written in large green markers. Each of her nurses also signed the bulletin board so she would know the name of the staff person.

Games of Caring

In this game of “name that patient” and “ring-around-revolving staff” It did seem disrespectful that a twenty-something staff person would address her as “Helen” like they were best buds.

In Disability World, we have often dealt with staff whose job was to write a report and then give their expertise as to what was best for Aaron. Sometimes the prejudice and low expections of the professionals are dangerous to the person (click here). As an advocate, I’ve been in meetings when psychologists (they were the worst) would go over their whole report with recommendations for placements or goals and they never even met the person. They claimed to know the person better than the biased parents or teachers…. Advocates always recommend parents bring a picture of their child to the meeting. I know of one case where the psychologist wrote the report up, only to find out he had the wrong person at the meeting.

Today, the company that provides Aaron’s residential care has “Home Managers” who oversee Aaron’s life. The “Home Managers” do not have anything in their job descriptions about getting to know Aaron–and since this is just a job to them–they do not do anything that isn’t in their job description. When I forced the one woman to actually meet Aaron, she explained she only did scheduling and paperwork. Yet, she is the person who would be in charge of Aaron if my husband and I got hit by a bus tomorrow; she is the person who signs off on Aaron’s ISP (Individual Service Plan) and she is the one who hires and trains staff. UNBELIEVABLE!

Always the Advocate

Learning to be an advocate is useful in so many situations. Research says people who are perceived as important, wealthy, or famous get better care than people who are anonymous, weak, and ordinary.

As the two nurses maneuvered the hospital bed into the elevator with the soft music and the doors which opened in the front and back, I looked at my mom. Here was this frail 88-year-old woman with her white hair mussed in bed head. Her skin kind of draped loosely around her eyes, mouth and neck. She insisted on putting on her lipstick before she went, so her bright red lips were in contrast to her pale waxy complexion.

She was just another old person to these nurses. She didn’t have an important story.

Going from Nurse to Patient to Nurse

On the elevator ride down to surgery, I told the nurses about her history. Suddenly mom was NOT a nobody. She became a real person—more than just the patient they were fitting into the schedule, the last surgery of the day, the hip replacement in room 424.

On the elevator ride down to surgery, I shared some of mom’s stories about the changes in nursing, hospitals, and medicine. We talked about the old days when mom wore starched white uniforms and hats–not permanent press colorful smocks and gym shoes with disposable covers. Think about it, in the fifties the hospitals were not air-conditioned (it was 85 degrees today) and many hospitals didn’t even have elevators. I told them how she visited the sick and elderly in their homes.

We were in the elevator for probably 4 minutes. That was all it took.

The Human Story Makes the Difference

Now, the old lady “Helen” was a retired nurse who worked when nurses really knew their patients. She was not a stranger; she was a nurse–one of them. She was a pioneer who paved the way for these two women pushing her bed. She was also a future THEM in 50 years when their hair would be mussed with bed-head and they would need caring nurses.

When we reached the doors to the surgery department, I kissed my mom on her red lipstick. This time when the nurse said, “Helen, we’ll take good care of you.” I smiled and knew “Helen” was now a real person and would get both dignity and good care.

In this picture, my mom, Helen Otten, is surrounded by my family. She died days short of her 93rd birthday. Loved by her children and grandchildren. She left a legacy of caring and love for her family and all her patients.

Share YOUR Story:

Come on, I’m sure you have some comments about hospitals, medical or school professionals, and caring.

Keep Climbing: Onward and Upward,
All the best,

Mary

“I Need a Job, Not a Government Plan”

by | May 20, 2023

This is Video Week.

So far we’ve seen:

The Values of Inclusion: From Down Under
By Heather Simmons at the Institute of Inclusion in Sydney Australia.

More than just a Graduation Speech
By Jeremy Sicle-Kira, a young man with the label of autism who uses an augmented communication system.

Today’s Feature for all you country music fans is from the Ohio Chapter of People First and was shown during the Rehabilitation Services Commission (RSC) Conference in 2012.

I loved this video, the message, the music, the participation, the fact that the People First group made the video and presented it to the “professionals”–I mean, who is teaching who?

Thoughts on Jobs and the Role of Government

Every day I watch my son, Aaron who has the label of autism, as he sits and loses skills he had in high school. We still have the dream plan, and we still have hope, but we need help to make it happen.

Why is that?

I know it is very popular to bash the government. “Not a government plan”, right? But is that what we really want?

The model programs, grants, initiatives for work, and job coaches of ten years ago are gone zap.

New RSC priorities and guidelines, cutbacks, and more cutbacks on funds have dried up and forced us back to depending on the charity, kindness and pity of others.

It’s NOT a matter of not knowing what to do

We know how to support people in the workplace. It is difficult surely, but we know how to get people jobs.

Special Education and Rehabilitation Services have decades of research and model projects. Marc Gold, Lou Brown, and hundreds of skilled teachers and professionals have shown us the direction and specific skills we need to get jobs. In this short video, Dr. Lou Brown talks about institutionalization vs. community. 

Unfortunately, because there is no mandate for adult services (like public laws which require children to go to school), there are also no requirements for adult day programs. No certification for the people in charge (GED preferred instead of licensed teachers), no functional or community-based curriculum, and no related services like speech, physical or occupational therapists. Adults are on their own. And there is no due process rights for parents/guardians to hold people accountable. We are told to find another program if we are unhappy.

So, what are our alternatives?

We have to keep believing. Keep telling others about the vision of a job, or if not paid, then meaningful work/volunteer experiences.

Our young people have to remind us not to give up. They have to keep in our face singing, shouting, and even misbehaving.

Certainly, we need the government. And we need those government plans to be more than just pieces of paper–we need them to support each individual so they can at least partially participate in having a job.

Comments: Any thoughts on “I need a job?” Any other videos you want to recommend to our community?

Keep Climbing: Onward and Upward

All my best, Mary

Related Posts

Functional Curriculum| Use it or Lose it

Busy vs. Bored Life

Remember this video:

Better than Church I still love this one, don’t you want to just sing along?

More than just a Graduation Speech

by | May 12, 2023

Graduation: More than just Words.

Did anyone like Jeremy go to your school?

What message would you tell Jeremy if you had the chance?

Jeremy Sicile-Kira’s Graduation Speech

Jeremy graduated from Torrey Pines High School with a 3.70 GPA on June 18, 2010. Jeremy has the label of autism with little verbal speech and gave this commencement address using voice output technology. His father, Jim Sicile, shot and edited this short movie.

Comments: Any other graduation stories you want to share? Don’t you wonder what is happening now? Is he in school? on a job? Does he live with his family or in the community? Does he have friends? I hope Jeremy is having a wonderful life with all the support he needs. Is graduation really the beginning?

Keep Climbing: Onward and Upward

All my best,

Mary

Other posts you might enjoy:

Remarkable Parents and Advocates who didn’t give up.

What is Inclusion?