Making a difference one child at a time

“She’s telling me she’s hungry.” Olivia, a non-verbal five year old, came to Ashley House after repeated stays in the hospital. Her single mom, Mary Ann, has struggled with her care lately. But she knows her daughter.

“She didn’t get breakfast, because they had some final tests before we left the hospital this morning. And it was okay for a while.  But now she says she’s hungry.”

Amy, one of our nurses, listens as Mary Ann explains: Olivia may not be able to talk, but over the past five years, she has created her own non-verbal language, composed of facial movements and occasional sounds.  Right now, she is sticking the tip of her tongue in and out of her mouth: this is how she tells her mother that she is hungry.

That’s  important for Amy and the other care staff to know. Because for the next few months, Olivia will be living at Ashley House.  She has been in and out of the hospital a lot lately, and the stress is hard on Mary Ann. “I love her more than anything.  I would do anything to help her. But I feel like I am fighting a losing battle.  I need help!” 

Born medically fragile, Olivia has become what hospitals call a “frequent flier”: when she is in medical crisis, she is brought to the ER, and usually ends up in the Pediatric Intensive Care Unit where doctors can stabilize her. After a few days or even weeks, she is sent home until the next crisis occurs.    

Amy moves around the bed and stands next to Mary Ann.  Most of us would not notice how Olivia communicates.  But Amy wants to learn her language as quickly as possible.  “Olivia’s care doesn’t simply rely on a medical chart with a list of medications and test results.  Our job is to help Olivia live the best life she can.  And that means she needs to be able to communicate with us her way.”

Amy hooked up Olivia’s food to her feeding tube, and watched as Olivia’s face relaxed.  Smiling, Amy stood where Olivia could see her, as Mary Ann explained Olivia’s “language” to her. “Olivia may not be able to say anything, but she has found ways to give her mom non-verbal cues when she is hungry, when she wants to listen to a story, when she is cold, or wants to take a nap, or when she is in pain.”  

Mary Ann is tired; she rarely left Olivia’s side at the hospital, and with the current nursing shortage, she has struggled to keep a home nurse to help with her daughter’s care.  Initially reluctant to bring her child to Ashley House, her reluctance turns to gratitude. “The doctors and nurses at the hospital, they work so hard to help Olivia.  But they don’t have the same kind of time to care for her that the staff at Ashley House has.”  

For all nurses, social workers, and nursing assistants, the past few years have been a rough ride.  But we are blessed--because through it all, they never gave up, making the kids in our care their priority day after day.

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