My husband Paul and I have three children. Our middle child, Paul Michael, was born in 1996 with an intellectual and developmental disability.
Looking back at my life, I think in many ways my childhood prepared me to be an advocate for my son. My parents left communist Cuba in 1959 and arrived in New York City. My father only attended school in Cuba up to about the 3rd grade. As I was growing up, I saw the struggles that my parents endured in this country. I helped them as an interpreter for as long as I can remember. I think my interest in serving as an advocate began very early in my life.
Paul was born full term at 5lbs 4oz. Although I was told that he was fine, something did not feel right. At three months of age, Paul was not thriving. I decided to switch pediatricians because I felt something was wrong and I needed help. The new pediatrician immediately listened and agreed with me. Before his first birthday, we were referred to countless specialists and therapists. Paul’s case was studied by well known healthcare experts at facilities across the U.S. yet no one was able to diagnose his condition. One doctor told me that it could take years to give us a diagnosis due to “limited technology” but I never gave up trying.
Not having a diagnosis for Paul was difficult. We managed his heart defect, seizures, kidney infections, mobility limitations, cognitive issues, irregular sleep patterns- always hoping that we would someday have a diagnosis.
In 2004, we moved to Greensboro from Miami. Along with our move came a new team of doctors for Paul. Finally, when Paul was 13 years old he was referred to a geneticist in Greensboro, Dr. Pamela Reitnauer. During our first visit, she completed blood work and a thorough examination. A few weeks after our visit, she called to inform me that she had a diagnosis for Paul. His DNA study revealed that he was missing a piece of chromosome number 7@7Q22.1. This was a rare condition that does not have a name. It took more than 13 years to finally have a diagnosis.
Since moving to Greensboro in 2004, Paul has been a student at Gateway Education Center. He is very social and enjoys going to school. They call him “the Mayor” of Gateway because he loves to shake hands and greet visitors. He has reached milestones that I did not think were possible. He finally began walking about 5 years ago. He has come a long way!
I am grateful to have been taught to speak fluent Spanish by my parents. I have had the opportunity to use my Spanish language skills and serve as an advocate and interpreter for countless Latino families with children who have intellectual and developmental disabilities. I have interpreted for families with critically ill children suffering from cancer, congenital heart defects and other diseases. I have also recently volunteered to help start a Latino parent group at Gateway Education Center. Our goal is to create an inclusive atmosphere which has improved communication and helped parents access needed services for their children.
Since 2010 I have shared our son’s story with many community leaders through “Other Voices,” a diversity/leadership development program of the Greensboro Chamber of Commerce. The program has included the stories of many families like ours. We have helped create understanding for people in our community living with intellectual and developmental disabilities.The path to my sharing my son's story and making a difference here in Greensboro has not been a path I could have foreseen nineteen years ago. But as the old saying goes, "If you can see your path before you, it is not your path." In other words, that path would be the one chosen for you by others...
I am deeply grateful to InFocus for all of us on this path together as we affirm our progress and our blessings.
Advocate & Mother
"IF YOU CAN SEE YOUR PATH BEFORE YOU, IT IS NOT YOUR PATH"
In other words, that path would be the one chosen for you by others...