Ben was less than a year old when they told us he couldn’t see well and needed glasses. He had a laser surgery on his eyes in the NICU when he was just a couple months old because of the eye condition (ROP) which can cause blindness if untreated. A pediatric ophthalmologist and retinal specialist were both seeing him and did follow up after we were discharged. When they told us he needed glasses I argued with them for quite awhile. I insisted Ben could see just fine – if I smiled at him across the room without saying a word he would smile back at me. He could see! They were very patient as they tried to explain to me the condition of his eyes and how he would probably experience more vision loss as he grew. I told them they were wrong. I asked how they could possibly determine whether a non-verbal (and rather non-compliant!) baby needed glasses. They spent hours explaining to me and answering my dozens of questions over the years that followed. He got glasses when he was a year old, just as he started to take steps. He broke 47 pairs in the first year. His record was breaking three sets in less than 24 hours – one set literally as we left the parking lot from getting the previous pair fixed. The glasses shop knew us well!
Every six months (or more often) we would take Ben in for another exam and they added a vision specialist to his therapy team and talked with us about braille and low vision and independence and treating him like the other kids, just modifying some expectations related to the vision limitations. They talked with us about protective eye gear and retinal detachment and through all of it even as I read and listened and researched and took notes I kept saying in my head (and sometimes to them) – NO. He’s not blind. He’s not going blind. We don’t need to learn braille because he can see. At three years of age he started sounding out words! By four he was reading! I felt vindicated – see, he can read! At one point I remember asking if he really needed the glasses at all since he was reading just fine, thank you very much. Continue reading “Processing & Challenges”