Sue Robins: The Upside of Down Syndrome
“I believe that people with disabilities are a part of the human fabric, just like all other people with differences. ”
This podcast is about more than Down syndrome. It’s about how we perceive ourselves and our world. It’s about identity, expectations, acceptance and love.
Sue Robins is a thoughtful and articulate woman who has used her life events to explore her own perceptions. I think this is something that we can all relate to. How do you define yourself? What events have caused you to re-create your identity and how did that change your world?
Raising A Baby With Down Syndrome
A Down syndrome baby changed Sue Robins’ life in ways that she never could have imagined. Her son, Aaron, was born with an extra chromosome.
That extra chromosome would cause her to re-think her entire value system and how she viewed the world,.
In her book, Bird’s Eye View she writes:
“My baby boy was beautiful. He was the product of a second marriage for both of us, evidence that broken people can heal. He symbolized hope and joy. He was our love child.”
But he wasn’t the child they were expecting. That extra chromosome would bring a set of challenges that no one is prepared for.
“I now know that I was the one who needed changing. I’ve only accepted my son through my own internal process of having a long look at my own misconceptions about disabled people.”
Raising her son, she encountered may roadblocks and social stigmas. Some questioned whether she had had prenatal testing, assuming that a positive test would have meant that she would terminate the pregnacy. Others couldn’t understnad why she’d gone ahead with the pregnancy, assuming that she knew she was carrying a baby with Down syndrome. The critiques were harsh and they hurt. When she tried to connect with other moms, they eventually went their own way, as their children followed a more “normal” developmental path.
“I had to create, from scratch, a new dream for my son, my family, and me.”
Meanwhile Sue was dealing with hospitals and doctors, where she learned that to get her son the care he needed, she would have to make that happen.
“Most of the job of being a mama bear is being outraged – at systems, at society, at injustices, at uncaring professionals.
Outrage is an all-consuming emotion that does a pretty good job of blocking vulnerability. Mama bears aren’t vulnerable! They are fiercely protective and get easily angered if there is a whiff that their child is threatened.”
The entire experience was very isolating. Every interaction with the medical community seemed like a monumental undertaking. Aaron’s Down syndrome forced her confront not just the biases of society and the health care system, but her own concepts of parenthood:
“Are we over-fixing our children so they can fit into the world? Is this being done in the pursuit of making our children the best they can be?
I have heard a number of young adults with disabilities say, “When my parents sent me to therapy, it gave the message to me that I was broken.”
I wonder now if it was me that was broken, not my son. What in the world did he have to be rehabilitated from?”
The Robins Family
Sue’s experiences as a Down Syndrome mom would lead her to becoming a leading health care advocate. She’s just published her second book, Ducks In a Row, about the need for a shift from the current corporate model back to a home human model that focuses on the patient and true healing.
Her books are so filled with the wisdom that comes from difficulty, self reflection, and genuine care. As is this podcast: