I had an extraordinary day yesterday. (Isn’t audiology fun!!) My colleague Nancy Schumann (speech-language pathologist and auditory verbal therapist) and I ran a support group for kids 9-12. We had 7 kids from 4th through 7th grade. They had varying degrees of hearing loss from moderate to profound. Some kids wore hearing aids, others cochlear implants. All were mainstreamed and the only child with hearing loss in their classroom.

They were not really sure why they were there as we started, but they got into it very quickly. We started off by asking everyone to tell a funny thing that happened to them related to their hearing loss. They talked about using their FM to overhear conversations not meant for them or lipreading things other people were saying. We then asked everyone to write down some things friends and family knew about them. After they wrote their lists, everyone was asked to talk about their lists. We wanted to know if they listed hearing loss and how high on the list it came. It was an interesting discussion. Some kids put hearing loss first, others listed in far down on the list and two did not include it at all. None of them knew what degree of hearing loss they had. (I guess we are not doing such a good job in counseling about test results.)

Selecting topics to discuss
We put questions on index cards and had kids pick questions. Then we went around the group and each person got a chance to answer. We had many more questions than we got to use. A few of the questions we used are these: When is it hard to hear? What can you do if you are having trouble hearing? What could the teacher do to make it easier? Can you ask your friends to help? What can your family do to help? Do people understand what hearing loss is?

What do kids say about difficult listening situations?
We asked kids where they had trouble hearing. They all agreed that the lunchroom, gym and recess were difficult at school. Parties were a problem, and everyone complained about not hearing when they went swimming. They also all talked about not hearing during sleepovers. Church was a particularly difficult place to listen. We discussed the problem of hearing in movies and TV. They all extolled the advantages of captions. They talked about their frustration when people did not want to repeat. We got into why people talking to us might get frustrated having to repeat and they were all surprised to learn that it might be annoying to have to repeat.

What can we do if we do not hear what is being said?
We discussed the sleepover problem. I told them about an experience I had as a kid when I went to camp and there was a child with hearing loss in my bunk. We all learned to turn our flashlights onto our faces when we talked in our bunks at night so she could hear. If we forgot she threw her wet washcloth into our faces to remind us. The kids all thought that was funny and decided to bring a wet washcloth as well as flashlights to the next sleepover.

We discussed things we could do if we were having trouble hearing. Changing seats was big. Some of the kids were willing to tell the teacher when they could not hear, others were not. Some had friends who looked out for them and checked to see if they could hear in the auditorium etc. Others were on their own. Everyone recommended using the FM. Asking people to repeat and to slow down were recommended. The kids seemed to agree that they could ask once or maybe twice but not more than that if they still did not understand.

Do people understand what it is like to have a hearing loss?
Everyone was unanimous about this topic. People, even family, do not understand that having hearing aids or cochlear implants does not give you normal hearing. I have to say that their attitude was terrific. They understood that people expected that all was perfect with technology and just accepted that people did not get it. They were not angry about it. We talked about what they could consider doing to help people understand. They talked about starting the school year with the person with hearing loss or the teacher of the deaf talking to the class about hearing loss and about equipment. Several kids commented on the fact that kids had heard the same lecture year after year but it did not seem to stick.

Is there something good about having a hearing loss?
“Listening in” on other people’s conversations using lipreading or the FM was high on everyone’s list. A couple of the kids had been in advertisements that used kids with disabilities, which they liked. None expressed the wish not to have a hearing loss. But who knows what they were thinking.

All used FMs in school. None used pass mics although several of the kids had them. None used FM outside of school. We discussed situations where an FM might be useful outside of school and all were surprised that using an FM outside of school was even a consideration.

Should we do this again?
The kids were surprised when we ended the session and all expressed an interest in meeting again. Having peers to talk to about living with hearing loss was clearly a good idea. Running a group like this may require working outside of the usual work hours to accommodate school schedules, but it is such an exciting experience for the kids and the group leaders that I cannot recommend it enough.

About Jane Madell

Jane Madell has a consulting practice in pediatric audiology. She is an audiologist, speech-language pathologist, and LSLS auditory verbal therapist, with a BA from Emerson College and an MA and PhD from the University of Wisconsin. Her 45+ years experience ranges from Deaf Nursery programs to positions at the League for the Hard of Hearing (Director), Long Island College Hospital, Downstate Medical Center, Beth Israel Medical Center/New York Eye and Ear Infirmary as director of the Hearing and Learning Center and Cochlear Implant Center. Jane has taught at the University of Tennessee, Columbia University, Downstate Medical School, and Albert Einstein Medical School, published 7 books, and written numerous books chapters and journal articles, and is a well known international lecturer.