Last week I caught up with Wendy Kupfer, award winning author of the children’s book Let’s Hear it for Almigal. Wendy discovered her daughter Ali had hearing loss at around the age of 10 months (today Ali lives in D.C., where she is a social worker.) We spent time talking about school, hearing loss, and supporting your child.
KK: What was it like raising a child with hearing loss at the time you did in the late 70s? So much has changed now with the internet and the way we gather information.
WK: When we first found out about Ali’s hearing loss we were completely overwhelmed. We were living in Bucks County, PA at the time and like so many other parents of children with hearing loss we didn’t know anyone who had hearing loss. It didn’t run in either of our families. In fact, Ali’s hearing loss was due to the Cytomegalovirus (CMV) that I had contracted while I was pregnant. And yes, there was no quick trip to the computer to Google about support groups or information about hearing loss in children. We found names of organizations that we could right away too and AG Bell was one of them. This organization played a huge role in our lives and I am so thankful for them. In fact I recently wrote a thank you letter talking about how meaningful they were in our lives.
KK: Having been through it myself as a parent of child with hearing loss I know about the decisions and choices that need to be made (aiding, implanting, therapy) all during a time of great emotion. Can you talk a little about the support and choices that you made?
WK: Making any sort of decisions about your child is so personal and unique to each family, that there is no right or wrong answer to whatever approach you decide to follow through with. It’s really about what resources and support you can offer as a family. For us, Ali was not quite a year old when her hearing loss was diagnosed and we had a little bit more time to try an approach. The oral approach (listening and spoken language) made sense to us. Thankfully we were directed to work with the Helen Beebe Center in Easton, PA, which was about 90 minutes away from our house. Helen Beebe was very much a pioneer in the field of auditory-verbal therapy. Ali was taught to process language through her ears, with the help of her hearing aids, rather than relying on sign language or lip reading. It was very intense therapy and we are all very involved in this approach as a family. Ali truly thrived in this environment – once she started she kept going!
KK: That is so good to hear. I just wanted to talk a little bit about your involvement as parents in the therapy process. I know we have spoken about the importance of parent involvement and the impact that it has on children.What is your take on this?
WK: It’s not only parent involvement that is so important, but parent attitude as well. As a parent of a child with hearing loss I did everything that everyone else did. I had high expectations of Ali; I always expected the best from you. Right from a young age I projected that attitude that Ali could achieve whatever she wanted to achieve, I don’t believe that her hearing loss should hold her back. I have always advocated for Ali from a position of believing in her, because if you don’t believe in your child and their abilities, nobody else will.
KK: Is there anything you wish you had done differently?
WK: There is one thing, and I really feel strongly about it, that children with hearing loss very much need to meet other children who have hearing loss. I was so intent on having Ali fit in with the hearing world that I really shied away from my involvement with other kids and families who were also dealing with hearing loss. To make a long story short, Ali has worked towards connecting with the deaf culture. In high school she was able to take ASL as her foreign language requirement which led to a class field trip to the Florida School for the Deaf & Blind. This really opened her eyes to deaf culture and she actually went to school at Gallaudet University, which was scary for her at first because she is so oral, but she really enjoyed her experiences there.
KK: Ali received her cochlear implant as an adult. How has that adjustment been?
WK: Yes, Ali received her CI at the age of 29. You know adults tend to adjust differently than children, but she is doing great. She brings such graciousness to everything she does and I couldn’t be more proud of her!
KK Wendy, it was great connecting with you and I look forward to future discussions! In particular we will be talking again in November in more detail about your wonderful picture book Let’s Hear it for Almigal.