Sophie, is a 35-year-old profoundly autistic, non-verbal resident of the Group Home of Melvin J. & Claire Levine Jewish Residential & Family Service. Up until recently, the only way Sophie could receive nourishment, supplements, and medication was through an implanted PEG tube.
When we initially met Sophie, her diet consisted of five basic items including water. This regime was due largely to various environmental factors at the time. Her family cared for her in their own home, but this eventually became too physically demanding for them, so they found her a place in the group home about ten years ago.
After years of creating a trusting, loving home for Sophie, our group home team sought permission from her primary care provider and her guardians to introduce her supplements, by mouth, rather than through the PEG tube, in an effort to avoid the infections often caused by having the device. Staff showered Sophie with encouragement to drink her supplements. Initially, she refused, but with support from both the staff and her peers–who literally chanted and cheered–Sophie summoned the courage to drink from a cup, and has been ever since!
Sophie’s care team plans to wait another month to ensure that she and all staff are comfortable, then speak with her Gastro provider and her grandparents to see how they would like to proceed. The ultimate goal is for Sophie to be device-free, slowly adding new foods to her menu.
Most recently, the team reported that she ate several pieces of an orange. Earlier this week, Sophie joined her her fellow residents at the dining room table and ate a bagel! Her family is thrilled with her progress, saying this is the greatest gift they have received in more than 10 years!