"Carter was known to listen to opera while working and Tristen und Isolde was a favorite 😍 He would show up occasionally at the Met opera while I was working there."

A Day in Our Autistic Life and Why I Got the Job

by Paul Nelson

It’s 6:00 a.m. I sit at my computer attempting to type my morning greetings on bluesky. I’m hindered. It’s completely dark, so I can’t see the keyboard. Occasionally, I open the refrigerator to see better. I’m also hindered by my cat Homer.

“Why is it dark?” you ask. “Why can’t you turn on a light?”

Well, it’s like this. My son, Michael, is severely autistic and non-verbal. He sleeps better in the living room, which is kind of one big room with the dining room at one end. I tried putting a TV in his room, but it wasn’t the same. It wasn’t as big. He likes the light given off by the big TV, so I made a bed out of the couch for him. When he’s done watching movies, he likes to drift off to sleep watching train videos on YouTube. He likes the train videos that are taken from the cabin of the train engine. It’s kind of a POV experience. I like them too. Our favorites are the ones from Norway or Finland, late at night and with lots of snow.

Anyway, I sit at my computer in the dark. Michael is still sleeping. As if this didn’t create enough difficulty, I have to contend with Homer. Homer is my big, lovable, orange, neutered male cat. He plants himself between me and my laptop keyboard. I must type with him resting on my hands. His butt is usually on the mouse. (Yes, I still like to use a mouse.) So, my fight hand can’t move more than an inch or two because there is a fifteen-pound cat on my right forearm. Homer’s front end rests on my other arm. Homer has my arms in kind of a half-nelson wrestling move. As he purrs mightily, I try to find keys in the dark, reach the keys, (and the mouse) and look over Homer’s shoulder to see what I’m actually typing. It’s hard to reach, so I can’t sit completely down in my chair, so I bend my knees and hover above Homer. All of this as I eat my banana. Sometimes, Homer gets creative. He places a paw on the keyboard and types liyhfujtrsd. I think it’s probably some cat word. I don’t know. Other times, he just delicately touches one key and types 222222222222222222222222222222222222222222.

I think to fully appreciate what’s going on here, you must visualize it. Let’s recap and maybe see this as an episode of “The Twilight Zone.” Rod Serling-Take it away!

A sixty-three-year-old man’s butt hovers over a chair at his dining room table. The man also hovers above his cat in total darkness, except for the refrigerator light. A train passes through an incredible night time snow storm in the living room. The cat sits upright, placing a paw on the keyboard causing a total alien invasion. Buildings burn and cars crash as huge laser beams rain down. The cat chuckles as his claws emerge and sink into the man’s wrist. For the first time ever, the cat notices there is a banana on the table.

About now, Michael starts to show signs of life. His toes twitch. This goes on for a few minutes. Occasionally, he rolls over and seems to sleep more. Other times, he erupts from his bed like Mount Saint Helens and is READY TO GO!!! Michael has many wonderful virtues, but patience is not among them. So, I finish my hard-boiled eggs and get my coffee ready to go in the car, because we MUST start each day with a walk through Walmart. It’s not the one close to us, because that one has brown cement floors. Michael really doesn’t like that Walmart. I think the floors are the reason. So, we drive twenty-five minutes to a Walmart with white floors.

Once in the proper store, we walk through it, taking the exact same route every day. Michael doesn’t want to shop. He is simply checking to make sure everything is where it belongs. Organization is vital in order for Michael to relax. He needs that security in order to start his day. After we do this, it’s off to Target! We do the same routine there, and follow the same route every day. This was really a challenge during the Pandemic. Even though he was feeling awful, Michael still wanted to do his morning walk-throughs. We didn’t, but there were a couple of morning meltdowns because we couldn’t.

After we do our walking, I take Michael to his day program if it’s a weekday. That’s when I get four hours to walk, clean, do laundry and general housework and cut the grass. I pick him up and come home for movies and relaxation. That didn’t used to be the case. We used to have to right from his day program to Walmart and Target. (again) It took over a year, but I was able to break him of the same routine in the afternoon. Change comes in baby steps with Michael, and many autistic people.

Michael eats very little during the day. When he gets home, I get the TV ready for movie time. Finding a movie is frequently a nightmare. I think most people think you could just put any old movie on for a disabled person.

“I mean, they might not even know it’s on, right?”

Wrong. That is very wrong. Michael has the same moods and tastes as anyone. We search through the cable movies and the Netflix movies. I’ve seen Michael absolutely captivated by a silent film, foreign films, war films, pirate films, opera, musicals, EVERY. SINGLE. installment of the “Chucky” movies. How can we be so naive?

People with disabilities do hear and understand you most of the time. They have the same tastes, moods and desires as everyone else.

I admit it. I was like that with Michael at first too. I did everything FOR him because he had a disability. What I learned very quickly, and later carried into my work in teaching, was to let him do more for himself and NEVER forget the fact that he understands you.

It can be kind of funny when people meet Michael for the first time. Most people are great, but there are some who just overdo it a little. They talk slowly and loudly, using very tiny words, and they try very hard to smile as they speak. This can lead to some grotesque facial expressions that may emotionally scar everyone in the room. Some people have been so polite and will ask me in private, “How should I talk to Michael?” This is a great idea in my opinion. If you are uncertain about how to speak, simple ask the caregiver or other assistant. Most of the time, you will hear them say, “You can just speak as you usually do. Issue avoided!

Key fact: Non-verbal doesn’t mean he/she doesn’t understand. They probably understand every word. Also, don’t be afraid to ask if there are any gestures or movements to avoid, and most of the time, you can speak as you always do.

I need to give Michael mostly finger food. He does pretty well with a fork or spoon. Cutting meat is out, so I have to cut that too. Usually, he eats chicken nuggets or a cheeseburger for meat. He loves vegetables that are steamed. He must use a sippy cup. He LOVES fruits and vegetables by choice. Ever since he tried baby food carrots and apples, he was an addict.

We go to bed ridiculously early. Michael goes with the daylight schedule. In summer, we stay up until about 8 p.m. In winter, we frequently are doing the night time routine by 6:30. I have to bathe Michael. He doesn’t understand how to adjust the hot water. (Yet, he can sit at any computer and get online, do Google searches, and more.) After his tub, I dry and dress him for bed. Michael can put clothing on, but it will be inside out, backwards, etc. He loves to pull his shorts or sweatpants way up almost to his chest. (I tell him he looks like a middle-aged man except for the can of beer.) He’s in bed by 7:00. I head off to my room a bit later. On a wild Friday night, I might make it to 8:30.

“How do you do it?”

I get that question a lot. It’s really a simple answer.

You must accept the fact that autism will dictate your life schedule. Forget about “normal.”

Normal is just a dryer setting.

That phrase is popular with disability families. If you can truly live by that phrase and accept the fact that living a different kind of life is absolutely fine, you can exist happily as an autism caregiver. It is, in fact Buddhist teaching.

Life is a river. We float in that river. We will certainly bump into logs and rocks. The only thing we can control is how we respond to those bumps.

I also have come to realize my earlier life was “boot camp” for what was to come. My wife was physically and mentally ill for all sixteen years of our marriage. It wasn’t really a marriage. It was sixteen long years of learning how to handle the most god-awful situations imaginable. That is when I developed terrible depression where I’d stay in a dark room all day, in bed. I went to a very dark place and came back. I had a job to do. I was with my wife when she died. I’m glad she wasn’t alone, but I sure hope she found peace.

After my wife died, my dad learned he had Parkinson’s. It turned out to be an especially aggressive kind. Dad’s symptoms were more like Alzheimer’s. However, it was brutal watching my dad, one of the kindest, warmest souls on Earth turn into a zombie. There was one time that’s very special to me. Dad was in a rehabilitation clinic. They were having a terrible time keeping him in bed. He would try to get out, but couldn’t walk due to the Parkinson’s. However, dad just kept trying and trying. Finally, the nurses had to resort to strapping him into the bed. I arrived for a visit and one of the nurses told me what he’d been doing. She asked me if I knew why he was trying to get out of bed so badly. I knew what it was. He was worried about mom. He knew he was dying. His last wish was to check on his wife to make sure she was okay. I walked over and placed my hand on his chest, looked right into his wise brown eyes and said, “Dad. It’s okay. I’ll take good care of mom. I promise.” He did his best to smile with the twitching in his face, closed his eyes and rested. Those were our last words.

Shortly after dad died, my mom suffered a major stroke. (three clots in the back of her brain) We also learned that she had Congestive Heart Failure. I knew mom would be a bit more of a challenge to care for than dad. So, I decided to retire from my teaching job. Michael was also about to enter a day program for adults with disabilities, so I knew I would be busy providing transportation for both of them. Mom made a tremendous recovery from the stroke and after three weeks in a rehabilitation center, arrived home. She had incredible physical toughness. I hope I inherited some of it. She settled nicely into a routine that included coffee with her friends a couple of times a week. Michael adapted nicely to his day program and I enjoyed, for the most part, spending time with both of them.

However, as I spent time with mom and her friends, I noticed a common thread. All of these women were incredibly devoted wives, but they had all been raised to be moms. They were all terrified of doing things their late husbands had taken care of, especially financial matters. This fear made them angry. Most of the time, they were happy and pleasant, but certain topics could set them off. Mom had always been on the inpatient side, and I watched her impatience turn into anger on a number of occasions-waiting at the doctor’s office and waiting to get her food in a restaurant were the worst. If my dad had been alive, he would have been horrified at her when she walked into a restaurant and immediately started barking out her order to the very busy waitresses before she even reached her seat. I did my best to discourage this, but was given the evil eye and a nasty comment.

“I KNOW they’re busy. I’m yelling out my order to save them the trouble of coming over to my table!”

As an autism dad, I notice fear and anger every day. Fear of the new or unknown often creates anger. Anger often becomes hatred, bigotry and racism, but it’s all rooted in fear.

Richard Pryor brilliantly used humor to fight racism, as did Mark Twain. Early in his career, Richard openly used the word “nigger.” I was always puzzled by this. Pryor and Carlin were truly life mentors for me. I was disturbed when Richard used that brutal word of discrimination. However, after enduring some horrible life experiences, Richard vowed to never utter the word again. He didn’t. In fact, his later standup routines were much gentler. Trauma can produce bitter bigots, or if we allow it, it can produce a wiser, more loving soul. Richard learned from being in hell. He grew as a person. I feel much the same. My terrible excuse for a marriage, my son’s autism, watching my dad suffer and dealing with mom’s occasional bitterness all helped me learn and become better. I never really liked my young self. I’m pretty comfortable with who I am now.

The word nigger is derogatory. It mocks those who simply have dark skin, which is a ridiculous thing to fear. Yet, millions of people around the world are racists. The same is true of the word “retard.” This disgusting term degrades those who have mental illnesses or disabilities. Again, this is the result of fearful people who can’t handle someone who is “different.” Rather than having a bit of courage and accepting those with mental challenges, it’s easy to simply refer to them as retards and build a wall of safety. We witnessed the extreme version of this in the last U.S. election. Donald Trump not only mocked a disabled reporter, he told one of his family members who has a disabled son, that it would be better if “these people with disabilities just died.” That should have ended his political career. Yet, his minions were overjoyed that he shared their fears. Trump makes the poorly educated, ignorant, bigoted population feel like winners. He’s their champion. Elon Musk refers to homeless as “stupid people who have serious mental illnesses and are lazy drug addicts.” Sadly, I’ve heard this shit for most of my life. I grew up in rural Pennsylvania where this level of stupidity and ignorance is commonplace. People there dislike teachers and higher education intensely. Those are the people Trump, Musk, (and Hitler) appeal to. Take the lowest level of human beings and make them feel incredibly important, and they will do anything you ask of them, including electing you president.

So, this is why my life has been difficult. It’s been my personal Bootcamp. I feel like I’m entering the fight of my life. I must find a good group home for my son. That alone is a tremendous challenge. However, I must do this in a time where some of the most evil bastards in history want to eliminate services for those who cannot care for themselves. Okay, challenge accepted. I have no choice, but I’ll be making some serious noise about the direction we’re going. I feel a fight coming and I have my mom’s toughness.