When I Recognized Another Mom of a Child With a Disability
Many of us who have a son or daughter with disabilities tend to become hypersensitive to any “atypical” behavior in those around us, be it subtle or conspicuous. We develop a sort of radar that cues us into other members of our “tribe.” Perhaps it’s that passenger acting out on the airplane or the child having a tantrum at the store.
In these situations, my reaction is to establish eye contact with the person and/or his caregiver and smile reassuringly, hopefully communicating: “I get it and it’s fine…”.
One recent example comes to mind.
For the past few months my husband has been battling with liver cancer. Before COVID-19, I used to stay with him in the infusion room during his treatment, debunking the idea of cancer treatment and cancer patients being depressing/depressed.
Our cancer center is a warm, cheerful place. Patients are rather upbeat and the nurses are kind and good-humored. So, over the months, you get to make friends and share “war stories” with those around you.
Just before the stay-at-home protocols kicked in, I had one of those “I get you” moments.
While reading on my tablet waiting for my husband’s IVs to finish running, I heard a particularly loud and friendly conversation close by, between a young man and one of the nurses. There was just a tad more familiarity than the norm. Obviously the nurse knew him well and joked back and forth while poking him to get his treatment going.
“One of our tribe,” I thought, smiling at the young man.
He was commenting on his favorite TV shows and repeatedly asked his mother to corroborate what he was saying.
“Aha,” I thought, turning around to see where his mom was sitting.
Sure enough, there she was. A couple of recliners away, doing some crocheting, I think.
My heart went out to this mother and son dyad.
I too have been there.
Early intervention when we were younger and had more stamina. Endless IEPs throughout primary and secondary education. The search for post-secondary services later on. Endless, loving caregiving.
I suspect that for this particular mom at the cancer center, pressing worries over who will watch her son’s back when she is gone.
#intellectualdisability #downsyndrome #family
Photo credit: Alberto Pardo Gomez/Getty Images
I´m Angela Couret, mother of three, the youngest, Alberto, with intellectual disabilities. For the last 35 years, I have documented and shared our family’s journey through Pasoapaso.com.ve, a Venezuelan website providing information, inspiration and resources to Latin-American families and professionals interested in disability and special education topics. Most parents of individuals with intellectual and developmental disabilities (IDD) would agree that raising our children with special needs poses quite a few challenges, while bringing incredible moments of joy. In my case, it’s been therapeutic to share these challenges and some of our solutions! We recently moved back to the United States, after a lifetime in South America. The urge to continue sharing our experience – now from the perspective of veteran parents of an adult with IDD – prompts these contributions, now in English! I’m grateful and proud of becoming a Mighty Voice!
acouret