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.

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    Oct 26, 2018

    Many of us look forward to the holiday season and all the memory-making activities that go along with family gatherings. Whether your tradition is to gather as a big group with extended family and friends combined, or a smaller intimate group; there are w…[more]

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    Hands & Voices' ASTra Educational Advocacy Training

    ASTra stands for Advocacy, Support, and Training. Minnesota Hands & Voices provides educational advocacy support and resources to families who have questions about special education law and how it applies to students who are deaf or hard of hearing. The program provides information and resources for parents of children who are deaf and hard of hearing that address the needs of these learners.

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    Our Minnesota Stories

    Ben's Story

    Hearing loss was not the first or last diagnosis for our family. Our son Ben was our first-born. We were thrilled to be new parents, and we looked forward to sharing music, 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. But they also warned us he might have many other challenges, including hearing loss.

    View Stories

    MDH Minnesota Department of Health

    Early Hearing Detection and Intervention (EHDI) refers to the practice of screening every newborn for hearing loss prior to hospital discharge. Infants not passing the screening receive diagnostic evaluation before three months of age and, when necessary, are enrolled in early intervention programs by six months of age. All 50 states and the District of Columbia have Early Hearing Detection and Intervention (EHDI) laws or voluntary compliance programs that screen hearing.

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