Defying the odds, a child with special needs is reading and doing math at grade level
Soon after Raffaella (Raffy) Swail (pictured above with her mother) was born, her mother faced every parent’s worst nightmare. Her daughter, who was perfectly healthy at birth, was deprived of oxygen for four minutes due to a medical mistake.
Raffy went into cardiopulmonary arrest, was revived, placed into a coma, and transferred into the neonatal intensive care isolation unit. As her lungs continued to fail and her brain bled from the trauma, her mother, Linda Rinaldi, faced an agonizing choice. She could put Raffy on life support, which the doctors told her would most likely put her into a permanent vegetative state, or let her daughter try to survive on her own. The doctors told Linda that they did not expect Raffy to make it through the night without life support. After much thought and a very sincere prayer, Linda decided to let her go.
“That night in her room I was expecting the worst,” Linda confided. “It was truly a miracle because even though she was supposed to pass away during the night, she started to turn the corner around 6:30 in the morning.”
Raffy continued to improve. After a long time, she was released from the hospital but was readmitted soon after when she failed to thrive. To increase her weight, the doctors inserted a feeding tube and tied her esophagus to get nutrition into her stomach. Raffy was allowed to go home again.
As she grew, Raffy experienced many setbacks, including multiple bouts of pneumonia and respiratory syncytial virus, which brought her back to the hospital time and time again. “The one thing I can say about Raffaella is every time she was in the hospital, even when she was sick, she was always smiling,” Linda recalled. “She’s such a trooper.”
Raffy’s doctors cautioned that she would not walk or talk and that her cognitive abilities would be minimal, but she proved them all wrong.
Raffy underwent intensive physical, occupational, motor mouth, and feeding therapy during her toddler years. She learned to walk, make sounds, and grab objects. “When it was time for school, I put her in a special education preschool,” her mother explained. “She was in her own bubble at that time. She wasn’t making eye contact or talking. She was physically unbalanced as well and could not even go up or down small steps without assistance. Raffy was extremely delayed, and it was a lot for her to simply sit by her symbol on the floor during school. It wasn’t good at all.”
Even though Raffy had special needs, Linda felt that she needed to be in inclusion for kindergarten. “We had this big meeting with the school and her team, including her special education teacher and the psychologist. Raffy was tested, and she had an IQ of 30. The state wrote me a letter that said, ‘Your daughter is mentally retarded.’ It was awful. I cried for three days after reading that. But I felt that she needed to be included in a regular class because she was doing worse, not better. So I fought for her right to be in an inclusion class and they gave her a chance. The principal of her school, who had a special education background, supported Raffaella when no one else wanted to. We agreed to a six-month trial.”
Shadowed by a full-time teacher, Raffy attended a regular kindergarten class. Thanks in large part to her shadow, Raffy has been able to continue in regular classes ever since and is progressing developmentally and academically. Last year she began speaking, not just sounds but words that others could understand. Raffy is now nine years old and attends 3rd grade at her neighborhood public school where she is reading and doing math at grade level. She is no longer in a bubble. Raffy loves school and wants to be a doctor or a princess when she grows up.
In recognition of her perseverance and positive attitude, the Council for Exceptional Children gave Raffy the 2016 Yes I Can Award. The award, sponsored by Pearson, acknowledges children with special needs who are making incredible contributions to their communities as artists, scholars, advocates, technology experts, and successful students and employees.
Linda hopes that by winning this award, Raffy will draw attention to the educational issues students with special needs face and the ways they can succeed with the help of advocates. She feels strongly that more funding for services like providing paraprofessional shadows would allow more children like her daughter to benefit from inclusion. “Raffy is living proof of what happens when you are a voice for a child,” she said.