Ten years ago, my son, Simon, was born very prematurely. He arrived sixteen weeks before his due date, weighing only one pound, three ounces. As new parents, my husband and I watched him grow steadily in the NICU, and we realized that his inner strength and determination outweighed his tiny physical size. After a routine eye exam while still in the hospital, we learned that Simon would be blind from a condition called retinopathy of prematurity. He was discharged three and a half months later, and since then, even though he is blind, Simon has been leading our family on a path filled with hope and inspiration.
Our first of many steps on that path began with the helping hands of therapists, doctors and family members who reached out to ensure that Simon had a healthy start to his toddler and preschool years. With weekly physical, occupational, vision and speech therapy he worked hard to develop the physical strength and fine motor skills that he would need to manipulate a cane and to read Braille. As his personality and verbal skills began to emerge, he would often engage his therapists and doctors in conversations befitting those of an older child.
As the years went on, we watched as special people were put onto our path in serendipitous ways. Two of these people were Rocco Fiorentino and his mother, Tina. Our paths crossed at a taping for a television show where they were featured for the extraordinary foundation that they founded to help families with children who are blind and multiply disabled. Tina and Rocco were pioneers on their own path and we were delighted to follow their lead. I spoke with Tina over the phone several times to inquire about Rocco’s experiences at school, about the technology that he used, and, because Rocco was a few years older than Simon, about what Simon’s future would possibly hold. Tina spoke to me with patience and encouragement. She also told me that as parents on this path we have to advocate for our children and we have to teach them to advocate for themselves.
On the website for the Little Rock Foundation, I learned of all the outreach that Rocco and his parents do to educate families, educators and lawmakers about how to provide for the needs of the blind in a sighted world. I also learned about the free summer camp that they created, called Camp Little Rock.
Although Simon had an outgoing personality around teachers and adults, he tended to be shy around other children. When I posed the idea of attending Camp Little Rock to him, he was hesitant. We decided to visit for just one day to check it out. Tina was more than happy to have us as guests for the day and invited Simon to participate in the sports activities, to have lunch in the cafeteria, and to watch the talent show in the evening. Simon was hooked! He couldn’t wait to come back the following summer for the whole week.
Over the next two summers at Camp Little Rock, Simon was paired with supportive, enthusiastic, (and cool) volunteers for the week. He made new friends, chatted away about music lessons, sports and school. He swam in a lake and rowed a boat for the very first time, told jokes in the talent show, rode a horse, danced until exhaustion at the dance party, and this coming summer, for the first time, he’ll be sleeping over at the camp slumber party.
Camp Little Rock has provided a place for Simon to participate in activities that he would never have been exposed to in another setting. The determination and will to thrive that my husband and I witnessed when Simon was born, was evident in the chances that he took at Camp Little Rock. Climbing a rock wall, being guided over a narrow balance beam poised above a muddy swamp, sliding down an enormous slide into a chilly lake can be harrowing achievements for a child who, initially, was reluctant to step out of his comfort zone. Camp Little Rock allows Simon to shine, to demonstrate the strong life force that we knew he had from the beginning. For my husband and I, it has given us peace of mind knowing that there is a place where Simon can feel safe, feel free to be himself, and feel special, not just for his lack of eyesight, but for who he is inside. Camp Little Rock has been a beacon on our path and we are grateful for its bright light on our journey.