Bargaining: Possible Outcomes, Part 3

Note: See Part 1 from June 13 and Part 2 from July 18. Part 1 began with:

After hearing the doctors’ recital of possible outcomes (in “Just Like Any Other Baby,” Mar. 15), I remember reviewing them in my mind and gauging them one by one. I looked at what might be the effects on our family life. And I thought about what I could accept with what degree of ease—and what I could not accept.

Possible outcomes

Part 1:

Blind

Can’t walk or talk

Part 2:

Cerebral palsy

Developmental delays

Part 3:

Learning disabilities

“Autistic-like behavior”

Mental retardation

“Learning disabilities”: Dyslexia was the first thing that came to mind. I knew that children with this issue really struggled with it, but I had the impression that there were assessments now for identifying it and techniques for improving one’s reading. Otherwise, I only had a vague notion of what this category entailed. “Learning disabilities” certainly seemed less severe and life changing than the other possible outcomes.

“We all have handicaps.”

Even now, I think of a learning disability as a specific problem with a specific thing. Apply the appropriate therapy: Problem solved? I’m sure it’s not that simple. And one thing I’ve learned is that we can’t compartmentalize various parts of ourselves—mind, body, spirit; each aspect affects the whole person. “We all have handicaps,” the priest who married us told me. “Yeah, yeah,” I thought at the time, but it’s true. But holistic health, a person-centered approach that doesn’t look for little niche categories but appreciates and respects the whole person, makes sense to me.

“‘Autistic-like behavior’ is autism; there is no difference.”

“Autistic-like behavior”: This possible outcome was interesting. Theo might display “autistic-like behavior” yet not actually be autistic. I mentioned this possible outcome to someone I met briefly, the father of a child with autism who needed a great deal of therapy and education. This man was going through a hard time in several other areas of his family life, which likely influenced his angry response: “’Autistic-like behavior’? Autistic-like behavior is autism; there is no difference.”

I remember reading about autism while earning a bachelor’s degree in psychology. At that time, speculation about the causes included blaming the mother. Charming. I wonder how long it will take to discover what causes autism spectrum disorder and how much of it is due to environmental factors like toxins in the air or water.

“Not a dumb one in the bunch!”

Mental retardation: I use that term because that’s what it was often called then, or “MR” for short.¹ When I was growing up, a common insult among kids—with scornful emphasis on the word’s first syllable—was “You ree-tard!” On a visit to extended family, I remember two of the uncles watching us young cousins playing and one of them saying, “Not a dumb one in the bunch!” This was meant as praise for their collective offspring, of course, not meant to sound offensive, but I thought, “What if there was a dumb one in the bunch? Would they get thrown out, or what?”

We spoke with a doctor in the NICU about the possible MR outcome. He was a gentle, good-humored man with a sensible approach—well chosen for talking to frightened new parents. I did not want to even think about this possibility so I don’t remember much of the conversation, except that there was talk about happiness, that happiness could be part of one’s life with MR. There was also a mention of problems with—or lack of?—higher-order thinking, like abstractions. This concept became one of interest later on.

1. Now it’s “intellectual disability,” and it also seems to be implied as lumped in under other terms like “developmentally delayed” and “cognitive disabilities.”