Editor’s note: Lois M. Collins wrote this story while participating in The California Endowment Health Journalism Fellowships, a program of USC’s Annenberg School of Journalism.
Zach Gregory is as pale as the milk he’s just knocked over with his elbow. His dad is trying to wipe the spill off the scarred wooden dining table with one hand, while using his other to stop his son from gouging himself in the face. There’s a semi-perpetual big pinkish-red circle dead center in the 18-year-old’s forehead, where he smacks himself whenever he gets the chance.
Lee Gregory has finished feeding his son and in a few minutes, he will put Zach’s plastic helmet and the arm guards back on, then guide his son downstairs and change his diaper. It’s almost bedtime and though it will take Zach a few minutes to wind down, he’ll soon drift off, the house enveloped in brief calm before the next day starts very early with wrestling Zach into clean clothes so he can be picked up for school.
Zach is profoundly deaf, has poor vision and is cognitively delayed. Experts estimate his behavior is similar to that of a 1- or 2-year-old baby, which means he’s restless and rough without intent to harm anyone. He’s never spoken, but he understands a couple of words in sign language. His family tried to teach him more signs, but it didn’t take.
When Zach was little and so much more portable, his folks would take him to church or to watch the fireworks. He’s obsessed with balloons — simply adores them — and people were fairly tolerant when a little Zach crawled from his blanket to theirs to swipe one. These days, Gregory said he never knows how people will react.
Still, it’s less an issue now because Zach’s behavioral challenges mean his family doesn’t take him out in public much. Even if they did, lots of people are uncomfortable with his disabilities and unsure how to act, so they simply pretend they don’t see him — or his parents or brother or sister, if they are with him.
A walking buddy once asked Lee Gregory how it felt to be treated like he's invisible when he's with his son. “I try not to pay attention to that,” Gregory replied.
Childhood cancers, behavior-impacting disabilities like autism, extremely brittle bones or compromised immune systems are just some of the conditions that may leave kids — and by extension, their families — feeling lonely. Today, the Deseret News concludes a three-part series on the effects of loneliness on vulnerable families, this time focusing on children with illness or disability.
Encounters with other people are “each a little spark of joy in the day,” said Dr. Norman Rosenthal, psychiatrist and clinical professor at Georgetown University School of Medicine. “Add the sparks together, you have a joyful day. If you have none of those sparks, life becomes lusterless.
“I think that’s the problem with isolation,” said Rosenthal. “Some people like their own company, and that’s fine. But primates need a social group and connection with others.”