Finding your village

What they say is true. It does take a village to raise a child. In most cases, this village of helpers includes family, friends, neighbors, doctors, teachers, and other community members. But when you are not like most cases, and your child is a micro preemie born 4 months early at a little over a pound, you soon learn it is imperative to assemble a larger, more specialized village of a support team to help you guide your child to reach his potential.

There are numerous people that have helped us in so many ways to help us navigate the rough waters we were in, almost drowning and gasping for air. They were there, ready to lend a helping hand when needed, giving freely of their time or expertise. The medical team of doctors and nurses in the NICU are to be commended for their knowledge and dedication to their profession, as their role was instrumental in creating this miracle of surviving the odds. At the time of his birth, the head doctor of the NICU solemnly gave us an estimated survival rate of a little over 10 percent. Meaning 1 out of 10 babies born this early and at this birthweight heretofore had survived. And with certainty there will be many challenges ahead.

Although they were still closed, his eyes were covered to protect them from the strong lights in the NICU, as we would not know yet if he would have vision or not. He was on a respirator, giving life to his immature lungs, and a silence to his cries. It all seemed so surreal, like being taken away on an alien spaceship to a different planet. A planet where newborn babies were housed in rows of protective plexiglass boxes and wired to beeping monitors keeping them alive. I am extremely grateful for having a network of support from friends, family, and the medical team, for without them, I don’t know how I would have survived this.

As he grew, albeit ever so slowly, by age three and still in diapers, this adorable pint-sized little professor with glasses excitedly waits for the huge yellow school bus to pick him up and take him to his first day of school. He was visually impaired from his premature birth and had very thick lenses with a strong prescription to help him see his world better. He was a very active and social child and loved playing with other children, although he had some challenges to overcome with his fine and gross motor skills, requiring physical and occupational therapies. By this point, our village extended to a special education teacher, a teacher for the visually impaired, a physical therapist, an occupational therapist, an adaptive PE teacher, and a special education administrator. Later, a speech therapist was added to this team, as he began stuttering and some educators thought he may have had some damage to his vocal chords from having been intubated in the NICU. I wasn’t sure if he just picked it up from the other children he was in school with. It was overwhelming and exhausting. And, unimaginable from a business perspective that a team of experts were there at our disposal to help guide my child to become a successful student and hopefully later to live a full and independent life. I did not realize the value of this “Early Intervention” until a little later.

It was not until he was almost four years-old and we were in an IEP (Individualized Education Plan) meeting that I fully began to understand. Up to this point, doctors, medical professionals, and teaching professionals carefully used the words “visually impaired” to describe our son’s diagnosis. But, on this day, his VI teacher (teacher for the visually impaired) mentioned him being legally blind. “What do you mean legally blind?” I asked. No one, not even his eye doctor had used this terminology before, so I was in shock and had completely broken down in tears. After composing myself, I asked for a clearer definition of the stages of blindness and then it finally clicked in. From this point forward, I vowed never to be led like a sheep again and just accept the information provided to me. I had much to learn if I was going to be a proactive member of this “expert team”. I am grateful to this VI teacher for having given me the jolt I needed to properly advocate for my “legally blind” child. Our village was extending to reach out to non-profit organizations to help us identify resources that would help us find a network of support. It was not easy having an active little boy that because of his vision, he wasn’t supposed to play with balls for sport. If a ball would hit his head, he would risk going completely blind. Sadly, American schoolboys are defined by their ability to either catch or throw a ball, and this was evidenced in 4th grade when his adaptive PE teacher kept trying to teach him to catch a ball. He reasoned it was good eye-hand coordination. I questioned why other sports more suitable toward building his confidence were not on the program. This made me realize my child needed more than what the local school could offer, and I began my search for a specialized academic program that also incorporated social and recreational opportunities.

It was the strength of the IEP team and some guidance from the National Federation of the Blind that helped us to secure a placement for our son to attend the state school for the blind, a place where he could learn and grow along with other children with visual disabilities. It was also a safe space for him to escape the bullying of elementary and middle school. Tragically, many kids are bullied, and at this time, kids who marched to a different drum were far from celebrated. We decided he would come back home in time for high school, as the blind school did not confer a diploma, so we brought him back home, and I homeschooled him for a year to prepare him for high school, as there were some holes in his academics that needed to be filled in. It wasn’t easy, but again, with the support of special ed teachers, we were able to get him caught up to his peers.

We chose a charter school that our friends with blind children had highly praised for the services they were able to provide. It would be difficult for our kids to navigate a campus of 3,000 students and manage to find their classrooms on time. A smaller school that was still under the public school system as to afford “a free and appropriate individualized education” is imperative for children with special needs.

There have been so many involved in my child’s development that need to be recognized, but I am forever indebted to the members of his IEP teams through the years. But I would like to especially thank his special classroom teacher, Lindsey, for guiding him through the entire four years of high school. She believed in him and knew to have higher expectations of him but also knew when to pull back a little without allowing him to fail. Without her support and guidance, I don’t know if he would have graduated. She also helped us to navigate the administration in allowing him the opportunity to finish his high school classes on independent study while pursuing a career path in film and tv in Los Angeles. I called her on the day I first dropped him off at the gates of Sony Pictures Studios. I parked the car across the street to watch with tears streaming down my face as he confidently strode past the wrought iron gates and checked in with security to be directed to the set he was to be working on. It was then, that I was overcome with emotion and gratitude. Without early intervention and IEP teams of special education professionals, and especially Lindsey, this moment of elation would not have been possible. Despite the odds, he survived and has thrived, thanks to a devoted village of special education professionals that gave him the tools he needed to succeed.