Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning. - Maya Angelou
When our son, Draven, was placed with us, we guessed he had more health issues than the hydrocephalus on his paperwork. I remember sitting at one doctor’s office and being told that I was an overprotective mother. I left that office in tears. I was angry at myself for not standing up to the doctor.
This happened a couple more times. Maybe the doctors were right. Maybe I needed to stop looking for something that wasn’t there.
Then Draven had to have surgery to replace his shunt. One doctor brought in several students to review Draven’s case. They used a lot of big words. But I did catch that he was “floppy” and “elf like.” That made me more determined. When we got home, I made an appointment with another doctor.
I made sure I had all my questions written and had all the hospital paperwork. I was sitting in the exam room holding Draven when a physician’s assistant (PA) walked in and introduced herself. She asked why I was there. I just broke down crying. I explained all my concerns. I was frustrated that the doctors wouldn’t listen to us.
The PA did a complete exam. She asked questions. I felt like she was really listening to my concerns. She told me she was going to send our son to some specialists. She believed he had more than hydrocephalus.
After more meetings, Draven was diagnosed with a chromosome duplication, cerebral palsy, Cortical Visual Impairment (CVI), and autism.
I was grateful for that physician's assistant. It was a long and tedious road we had to travel to get the answers our son needed.
I want to encourage you to speak up for yourself and your children. You know your child better than anyone. If one doctor does not listen, find another. Keep trying, if you must.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.