I had been a teacher of students with visual impairments and orientation and mobility specialist for a few years when my husband and I welcomed our son, Alex into our lives. Things were turned upside down with the typical sleep deprivation and new parenthood stress. At six weeks, I noticed something as I stared into his brown eyes that were moving rapidly side to side, nystagmus. No one saw what I saw, not my husband or the ophthalmologist. All of a sudden, I was the parent experiencing what so many of my families had experienced. I felt alone because my husband was in denial, and I was fearful to share with my family and friends. Over the next few months, we learned that he had inherited a congenital eye condition that causes nystagmus and reduced acuity.
At the grocery store, cashiers said, "he looks tired," as his eyes moved, and my mother-in-law said, "he looked like a cartoon character." My stomach hurt when I knew I would have to explain to the ever-changing gym childcare worker that he was not having a seizure, but his eyes just moved involuntarily. I never admitted that I was hurting because I felt like I had to downplay my feelings because his vision was relatively good compared to so many students I worked with over my career.
He entered preschool, and I sat across the table now from colleagues. As they read the Individualized Education Program (IEP), I knew the boxes they needed to check and the services they would offer. I knew the feeling they felt as I shared my concerns about his vision and his needs. So many times, I listened to parents of students with low vision express their concerns about their child. When I became a TVI mom, I realized how much my child’s reduced visual acuity was impacting his participation in class. I did not want to have to put his vision into perspective to students who are visually impaired, but I wanted his access compared to typical students.
My son is finishing Kindergarten, and I continue to struggle to allow myself to feel the emotions that come with having a child who is visually impaired. As I read the articles here on FamilyConnect and follow Facebook support groups for students who are visually impaired, I remind myself that we all have different experiences, but there is power in sharing our stories.
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