“I’m ready to tell my story! Have you seen any of my movies?” This is how Eric Naindouba, a soon-to-be 14-year-old with cerebral palsy greets us as we meet for the first time in a local McDonald’s. Eric is with his friend Kathi Frankel, who has known him since he was five. This is where Eric wants to start his story – how he and Kathi met. “Me and Carol and Mama were at the hospital …”
Clearly an extrovert, Eric is all about communication. He wants to be known and to contribute to the conversation and to the world. But speech does not come easily for Eric. Each word he says is hard-won. Cerebral palsy affects his ability to control his muscles, including his mouth and vocal cords. His voice expressively ranges in tone from highs to lows, and he repeats words or phrases urgently to be understood. It takes time and effort to understand him, and sometimes Kathi acts as a translator. Her skills as a physical therapist and her awareness of his history and personality give her a quick grasp of Eric’s speech.
Eric has had to face people who doubted his capacity to communicate or think. Throughout our conversation, Eric speaks of his love of learning and being engaged. “When I return to my old school, I go to summer school. I love that! It gives me more to do on my goals.”
When asked what his goals are he states: “Number One, to do my work on my iPad. Number Two, reading and math, and science and social studies.” Kathi adds with a smile, “He’s a stickler for details. He’s very methodical.” In the busy and distracting environment of a McDonald’s birthday party, with friends and family coming and going, stopping to give Eric a hug and a smile, it is Eric who brings us back to the conversation, remembering exactly where we left off and what he wants to say next.
Eric was born while his mother was fleeing a war in the Central African Republic, their home, en route to a refugee camp in Cameroon. The trip was difficult, and Eric suffered brain damage as a result. He lived his first five years in a refugee camp. The camp provided medical care, but life was difficult living on flour and water, enduring long lines, and not having schools.
In 2010, with assistance from the International Refugee Commission (IRC) Eric and his mother, Nestorine, landed in Atlanta, GA. His father remained in Cameroon. Which brings us back to the story of how Eric and Kathi met.
Kathi Frankel is a pediatric physical therapist who works at a children’s hospital. She went down to get a cup of coffee one day and noticed a mother and a young child in a small stroller. The mother looked lost. Kathi noticed the IRC emblem on a bag. Having worked with refugees, Kathi knew they may be feeling overwhelmed at the hospital. She went over and asked if they needed any help.
Eric was five years old at the time, and was there for a swallow study. Because of the muscle control issues, aspiration, or choking on food, is a common safety threat for children with cerebral palsy. Eric was there to be evaluated for his risk.
He had been eating fine and not had any issues. Kathi says, “He ate well by mouth. His body would lean to the side. It wasn’t traditional – so the doctors were afraid …” Some of the doctors insisted that he was going to need a g-tube (gastrointestinal tube). At the recollection of this, Eric becomes agitated, his voice ranging up and down, and he says: “What? No! I eat WELL!”
Kathi checks in with Eric to see if he is OK and asks him, “Should I tell them who they called?”
Eric nods yes. “We had a run-in with the department of child and family services,” says Kathi. “I felt that this family did not need to have intervention from a social service agency, and that he was not aspirating for the test and that calling the agency was crossing a line.” But after the phone call was made, Kathi became involved and was present at home visits from the DeKalb County Division of Family and Children Services (DFCS).
This built into a crisis where Eric was at risk of being separated from his family. Kathi advocated strongly for the Naindoubas to stay together. She knew that the mother and child bond was strong and that Nestorine was capable of caring for her son. They needed time and support, not punishment. The county’s concern was that Eric was medically fragile, at risk for aspirating, and that his mother was not capable of providing for all his needs. That is when Kathi realized that helping this family was going to entail more struggles than she anticipated. It wasn’t going to be just about offering to help them find wheelchairs. Kathi was taking on more legal responsibility in her role as a volunteer and family friend. She worried: if he did ever aspirate his food, would she be responsible?
After that experience, Kathi was determined to help the Naindoubas get more support that would prevent them from falling through the cracks. Kathi successfully applied for the comprehensive Medicaid or COMP waiver, which now pays for caregiving support for Eric.
After hearing this story again, Kathi seems worn out by the memory and asks Eric, “What’s something fun we’ve done?” “Derona!” says Eric.
Derona King, the head of Citizen Advocacy of Atlanta/DeKalb, is helping Eric learn how to be an advocate for others who have intellectual/developmental disabilities (I/DD), like him. He has been speaking at a yearly history of disability symposium.
Eric and Kathi are helping another refugee mother from Congo, who also has a child with developmental needs. Eric speaks proudly of the letter he wrote to the then-mayor of Clarkston, Ted Terry, asking for better schools for refugee kids. He invited the mayor over to visit, and Mayor Ted accepted.
“Even the mayor knows Eric,” smiles Kathi.
Eric has many dreams for his family and his life. He would like to spend more time in the community, hold meetings at the local coffee shop to listen to others and hear the voices of refugees. He would like to invent things for people like himself and go to Georgia Tech. Eric sees himself as an advocate, and he welcomes others to see his vision and help advocate for him.
Kathi shares what she has learned from her friendship with Eric: “He has led me down a path of love and understanding that no one can teach in school. He is a model of hope, but he is also a real, intelligent person in that struggling body. He wants what we all want – to be a regular person, and be treated as such.”
Telling Our Stories paints a picture of the complex systems of support that enable people with developmental disabilities to live their best lives. Spanning Georgia’s 56 state senate districts, these stories feature at least one individual who resides in each district – allowing this project to become a vehicle of advocacy for Georgians living with disabilities.