A Do-Over

Elisa, a blind mom to a blind student, gets the chance to give her son the education he deserved.

As the blind parent of a blind child, I have a unique perspective. Not only am I a fierce advocate for my son as any mother would be, but I have walked in his shoes. I was a first-grader in the 1970s, not long after the passage of the Individuals with Disabilities Education Act (IDEA). I endlessly struggled to keep up in a regular education classroom with very few accommodations. I had some vision, so Braille was not recommended. This decision would have detrimental consequences for me the rest of my life. When my 16-month-old son was diagnosed with leber congenital amaurosis (LCA), an inherited eye condition that causes severe vision loss, I vowed that his experience would be different, and it was. He had everything he needed to succeed, and the sky was the limit.

Courtesy of https://unsplash.com/photos/0rTCXZM7Xfo

What I want every parent to know: Do not be intimidated. Sitting at a conference room table while eight Child Study Team members tell you that you are wrong can rattle you. Do not let it. You know your child better than anyone. Set the bar high. Just because you have no idea how your blind child will tackle that map project for Social Studies does not mean it cannot be done. You and he will figure it out, so do not ever expect less. Do not let anyone talk you out of Braille. Even if your child has functional vision, the chapters get longer, and the print gets smaller. It is no wonder that blind adults who read Braille are significantly more likely to be employed than those who do not. Mobility and more mobility. Many professionals believe that young children do not need mobility training because they do not yet travel independently, but they are wrong. It is never too early to start. You cannot go to college or work if you cannot get there. Technology has changed the world. Embrace it early and often. Assistive technology is critical to a level playing field in school and a key to living independently.

My son graduated high school last week as President of the National Honor Society. He is the recipient of the Business Department’s Academic Award. In the Fall, he will be attending Stevens Institute of Technology for a bachelor’s degree in Business in the Accelerated Master’s Program. I never expected anything less.