You Cannot Help Doing Your Best

When my developmentally disabled stepson Andy reached ten years old, we felt we needed a professional evaluation of his potential. Our goals were to ascertain the best educational placement for him and to predict a long-term prognosis for his future, so we could make plans for what might lie ahead.

We took him to The Exceptional Children’s Foundation at the Johns Hopkins Hospital Clinics, in Baltimore, Maryland, a highly esteemed institution. We had great expectations as we approached our two-day sojourn there. We were to be greatly disappointed. 

Everything went wrong, mostly because the testers did not pay attention to the materials Andy’s teacher and I had provided. By the end of the second day of tests, when we were called in for The Evaluation, our hearts were heavy. We were prepared for the worst but we could not, even so, have anticipated what we heard.

“Your son is untestable. He will never learn to speak. He will never learn to read or write. You must put him in an institution immediately. If you do not, his care will cause your marriage to fail and damage any other children you might have. He will be a drain on society. There is no alternative.”

I felt so angry, I dared not speak. 

The next day, as we drove home, Richard began to talk about placements. I agreed to visit two boarding schools, but we could not afford to spend Richard’s entire salary on either of them. I would not have agreed to spend a penny on such a venture, anyway. I knew Andy would talk like the rest of us. (I did not, then, realize he had brain damage and a linguistic challenge.) I knew he would read and write, and live alone, and have a job and a car. I knew I would help him realize these things; and I knew no one and nothing would stop us.

When Andy reached adolescence, as happens to many autistic/schizophrenic youth, he often became violent. While I underwent the most frequent expression of his temper, others felt it too. The private school he attended expelled him. He then went to a succession of public school classes before he finally landed in a good situation in a high school class with one major advantage. They had a contract with Goodwill Industries for job training; Andy participated in that program.

However, his temper frequently got out of control on the high school campus. One day, his guidance counselor called me. He told me Andy had so much difficulty because I put too much pressure on him to be “normal.” He said, “Andy will never get a job. He’ll never have a place of his own and a car. He’ll never go to college. You have to tell him he cannot do these things so he won’t feel so much pressure.” I argued with the counselor, but I could not, in the end, argue with the fact Andy had fights almost daily, so I agreed to an experiment. I would try to do what the counselor recommended.

That evening, I talked with Andy. I told him the counselor called and told me about the many fights. The counselor thought Andy had too much pressure. I said, “Maybe you won’t be able to have a car and a place of your own and go to college, after all. Maybe you don’t have to try so hard. Maybe you can take it easy.”

It didn’t work. Things didn’t really get worse. They couldn’t get much worse. But Andy became angry at me again. He didn’t act violent toward me; he just stopped talking to me. Busy in graduate school, I really didn’t think about it or pay attention to his anger, in the moment.

He did graduate from high school. He got a job. He went through an independent living program and got a car and his own apartment. When Governor Jerry Brown mandated each state hospital had to hire a quota of developmentally disabled persons, Andy became the first person hired at Fairview Developmental Center. (He retired from that job, with full benefits, forty-two years later.) He also attended the community college, where he took art classes. With twenty-three years of diligent effort after work and on weekends he got his AA degree!

After the first couple of years of independent life, however, he went through a pretty rocky period of clinically significant psychosis. During a touch-and-go month, he managed, with the help of many friends and his parents, to keep his home, his car, and his job. One morning, after a 3:00 am bail-out by his Dad with a tank of gas in the middle of nowhere, he called me in a rage. He ranted for nearly an hour about nonsense. Finally, he started talking about the time I’d told him he couldn’t get a car, a job, or a college degree. 

“Why did you do that?” he screamed at me through the phone.

I sensed, somehow, this to be the crucial point of everything. I took a deep breath and paused to be sure I got it right.

“Because,” I said, “the counselor told me to. I didn’t want to. I didn’t think it right. Remember? I always said you could do those things. I always believed in you. I had worked hard for years to help you get that far, and I wanted you to go all the way. But you were having big problems at school. You were fighting with the other kids all the time. The counselor told me it you did it because I put too much pressure on you, and I had to stop. I had to make it easy for you. The counselor said the teachers and the principal all thought so, too. I didn’t like it; I cried. But I had to do it. They were the authorities, and I just the parent. You see? I did the best I could do!”

A long pause followed. 

All the rage gone from his voice, Andy said, “I didn’t know all that. You should have told me.”

We talked for about a half-hour about that, and other things, too. His psychotic episode ended right then.

I learned a valuable lesson from that experience. Something I’d said for years is true. We all do the best we can do at any moment in time with whatever we have to work with: ourselves, our minds, our feelings, our education, our experience, our caring, our surroundings. Right now, this minute, in this circumstance, we do what seems best. It is the best we can do; we can do no different and no better. No one can judge us for it. In that situation, they would do just the same. What we do is the best we can do.

First Blog

This is the first Blog I have attempted to write, so please bear with me as I stumble and bumble my way.

My Blogs probably, in the grand scheme of things, will be shorter than most. There are at least two reasons for this. 

The first reason is that I don’t want to wear you out or bore you.

The second is that the topics I know enough to write about have already been used. Most of what I’ll have to say is a distillation of all I’ve encountered about each topic, gleaned over the years from so many sources it would be frivolous to mention them all. When I stimulate your interest in some way, and/or you have more information about the topic to share with me and others, please feel free to Contact Me.

Here’s a short list of topics that may find their way to this blog. If you’d like to add (or delete) a topic, please let me know. I expect the list to grow.

  • Autism and other conditions that can affect or change a person’s life—everything from “How to Be One,” to “How to Help One.”
  • Why each of the books on two shelves in my bookcase is there. These books have informed my life. They taught me something by virtue of their content, or they stimulated my interest in the art of writing well, or both.
  • Other book reviews—an eclectic variety of topics and styles.
  •  “How to ….” pieces about a wide variety of things, from how to cope with a parent with dementia to how to procrastinate when you’re faced with a major project.
  • My favorite recipes. 

I’m sure I’ll think of more topics. I look forward to both your comments on anything you encounter on this website and suggestions for other topics. Some of these latter may be out of my ken, but I’d like to hear about them.

Thank you for reading this far. Stay tuned. I hope to change this blog weekly.

Cybele

Codfish Dinner

On a cold, gray 
Michigan winter evening,
we sit to dinner.

Codfish, mashed potatoes, canned corn; 
all cold.
The fish is old;
fried to leather, 
it smells like rancid ocean.

No one speaks.
I push fish flakes 
among corn nibblets,
unable to clean my plate.

My grandmother giggles.
My mother titters.
I look to my right.

With brown eyes dancing
above his solemn face,
my little brother wears
a mashed potato beard