Note: See Part 1 from June 13.
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
“Cerebral palsy”: Well, I knew a bit more about this possible outcome; at least, I knew it might include a whole range of physical issues from mild to severe and that cognitive issues might or might not be part of it. As a teenager, I’d read the book Karen, by Marie Killilea, more than once, a mother’s record of her family but centering around her daughter who had CP. They went through a long process of Karen learning to walk with crutches, only to conclude that for her, a wheelchair represented a greater freedom.
I remember a passage in the book when the mother was trying to help her daughter learn a physical skill. She addressed her readers, asking them to examine some of their own marvels of physical coordination that we take for granted. “You’ll be amazed by how flexible and supple you are,” I remember as her comment. I would later experience being the one to model and coach physical skills, breaking them down into small steps with (ideally) patient repetition and encouragement.
Also, I knew that the physical effects of CP, like not being able to walk or gait difficulty, as well as speech impairments, might mask the actual intelligence of the person and inhibit social interaction with others, who might assume the person had cognitive issues also or not take the time and “trouble” to try to communicate.
I thought the outcome of cerebral palsy would be complicated and difficult.
“Hope for the best, prepare for the worst.”
As I knew from living with my husband and hearing stories of his growing up, and also from reading about special education as part of my job, people with special needs often struggle with making social connections and finding lasting employment. Even with a loving family, the social isolation and sense of being different from others may contribute to psychological issues.
Theo’s father often talked about wanting “a level playing field.” What do all people need? Recognition of our mutual humanity. Love, respect, equality of opportunity. Love most of all. Social isolation, as we have heard about during the COVID-19 pandemic, is so bad for us. We need each other.
Developmental delays: At the time I don’t remember looking this up. I understood it to mean reaching physical or cognitive milestones later than most people. I didn’t think that “delays” might include “never achieved,” probably because I didn’t want to shut off any possibilities. “Delays” or “challenges” sound more optimistic than impossibilities. Early on, I felt determined not to assume the outcomes of braintalk-related terms like “deficits.” I didn’t want to treat Theo differently or as if having limitations because I didn’t want to create a self-fulfilling prophecy.
“Hope for the best, prepare for the worst” is what they told us at the children’s hospital. At that time, and maybe long after, I couldn’t even imagine the worst, let alone prepare for it.
Next: An Abundance of Surly Teenagers
Next related post: Bargaining, Part 3
Hi AJ:
What an education you are giving me! You explain your feelings and thoughts so clearly.
Blessings to you and Theo!
Lynda