Ben’s Story

Our son Ben was our firstborn. We were thrilled to be new parents, and we looked forward to sharing music and laughter, and being an active family.

When Ben wasn’t rolling over at four months, we knew something was wrong. When he still wasn’t at six months, we were told that he had cerebral palsy on one side of his body. They also warned us that he might have many other challenges, including being hard of hearing.

We visited all sorts of medical professionals to cross each off the long list of possible problems. To our relief, most of the issues never appeared. However, at eight months, we learned that Ben was profoundly deaf. We grieved the loss of sharing music, listening to his little voice, and watching his body develop like other children. I thought I would never stop crying.

With time, we moved onto taking action. This felt good. Our family learned sign language. Ben was fitted with hearing aids. We received incredible support from our local school district, professionals, family, and friends. As difficult has this journey has been, I have considered these relationships to be life-changing and powerful.

When Ben was almost four, he had cochlear implant surgery. This was a difficult decision for us, but I would do it again. Only this time, I would have done it when he was younger. This boy, who could only feel a train go by and tried so hard to please the audiologists by pretending to hear sounds that he couldn’t, could now hear speech. We cried again, but for different reasons. Soon we would share our music, hear the sound of his developing voice, and his body would conquer the many challenges of cerebral palsy.

Today, Ben is in high school. He is a young man who signs, uses cued speech (a visual reinforcement system to spoken English), and uses his voice. Not everyone can understand his speech, and he doesn’t hear perfectly, so visual communication serves him well. He also has many “tools” to choose from.

We hoped that Ben would have a wide community to support him: a signing community, a cueing community, and a hearing community. I rejoice when I hear and see him argue, laugh, spar, or share sweet moments with his sister – whatever method they choose at that moment.