Shortly after Logan was born we learned that he had suffered brain damage during the emergency delivery. It was not clear how the brain damage would impact his development then but withing a few months he lagged behind his twin brother in all developmental milestones and developed infantile spasms, a seizure disorder that has been associated with cortical visual impairment (CVI). At the end of his first year, he diagnosed with cerebral palsy but it was not until much later that he was finally diagnosed with CVI. We learned of the CVI diagnosis at age 4 and this began our journey to learn as much as we could about a disorder that many specialists had never heard of before. The prognosis was bleak. There was no known treatments and we had little hope that his vision could improve.
As I researched CVI, I found that the need and demand for vision services far outweighed the availability of qualified professionals nationally. This is still very much the case in Florida.
We have had a difficult time finding vision services and professionals trained in CVI in our state. Professionals who are trained in CVI are near non-existent in Florida. We travel over an hour each way every week to access TVI services from the Lighthouse for the Blind in Miami. We had been receiving Orientation and Mobility Services (O and M) until last year. O and M services were discontinued late 2022 after the professional left the Lighthouse and we could not find a replacement. This left Logan without any O and M since 2022.
Enter Dr. Roman-Lantzy and the Children’s Home. When I was informed of Logan’s CVI diagnosis at age 4, I was lost. I had never heard of CVI and could not believe it was missed by all the specialists and educators. I found Dr. Roman-Lantzy work after an extensive search for answers and immediately contacted her office. I even followed her to a conference in Texas to hear her speak in person. She has assessed Logan three times since he was diagnosed in 2018. Her CVI range assessments have helped me advocate for vision services as well as tailor his private therapies to his unique needs based on his range score. Logan has made considerable progress in ALL areas and this could not have been accomplished without Dr. Roman-Lantzy’s help!
We have witnessed Logan’s vision improve and along with it we have seen progress in language, communication, independent functioning, gross and fine motor, and literacy.
Dr. Roman-Lantzy is not only extremely knowledgeable about CVI but she is always kind, understanding, and willing to help. You never feel like another “patient” with her. Her genuine care for kids with CVI and their families comes clearly through each and every time she speaks. We were fortunate to schedule a week of intensive vision services with her team at the Children’s home recently. Children’s home is the perfect fit for her and the important work she does. From the first day I arrived for the intensive I felt welcomed and supported, everyone was thoughtful and kind. From the friendly receptionist and janitorial staff to administration, staff made sure we were comfortable and frequently asked if there was anything we needed. It was clear that they understood we were far from home and seeking medical care for a child away from home is not an easy thing.
During the intensive, I learned how to implement strategies and modify current therapies based on my child’s need. I could see results during session. Logan was performing tasks successfully that he had not done before. I saw him transfer knowledge from the intensive to situations outside the Children’s Home. For example, he learned to play connect four during the intensive and not only recognized a large version of the game an outdoor restaurant, he wanted to go play. This gave me hope that his vision can improve and he can be more engaged with the world around him.
Barbara Lopez Avila, PhD