I spent last weekend at the CARE Project teens and tweens retreat at Bald Head Island in North Carolina. The CARE Project provides support to families of children with hearing loss. Until now, the retreats have been for families with young children,but this one was the first directed at families with older children.
Johnnie Sexton, the CARE Project director, had developed a wonderful program and it was an exciting weekend. Project volunteers arrived Thursday evening or Friday morning and stayed in houses donated by people on the island. Volunteers included young adults with hearing loss who could serve as role models, parents of older kids with hearing loss who could act as mentors, film crew, cooks, and child care helpers and me.
Families arrived on Friday evening and they were put up in apartments offered by people on the Island. Saturday morning the kids met and went on a nature hike with their mentors. They began to bond with each other and with the young adult mentors with hearing loss, while I met with the parents. We had a wonderful meeting, talking about shared concerns, managing teens (which is difficult with or without hearing loss), handling technology, how to know if technology is working, and, of course, FM systems. The parents were wonderful, asked lots of good questions, and we had a great discussion. I think we were all happy to spend the time.
After everyone took the afternoon off to go to the beach, the group met again before dinner. The moms gathered in one group, the dads in another, and the kids met with their mentors. Everyone had the opportunity to talk about their special concerns in a group of their peers. We had dinner together and I, for one, collapsed and went to bed.
Sunday morning I met with the kids and their mentors, and Johnnie met with the parents. The kids had been together for 24 hours by then and had really bonded. They were so happy to meet with other kids like them – kids with hearing loss, who are mainstreamed, and who are not just the only child with hearing loss in their classes, but in their school. We talked about what is difficult about having a hearing loss, and as a group talked about what kids could do to make things better.
What are the kids concerned about?
Batteries: Every time I do a support group I get the same collection of concerns from the kids, so I have to believe that these are the universal issues. The first one is handling batteries dying. What happens when the battery dies at school and you do not have a spare battery? What about managing rechargeable batteries? We talked about all the things that we could do – keeping extra batteries in your backpack, leaving some with the school nurse or a teacher and being prepared.
Water issues: A second major complaint was having to remove hearing aids for swimming and other water activities. Being cut off from others is very distressing to the kids who use listening and spoken language. They don’t like it, and I don’t blame them. They talked about wanting waterproof hearing aids and cochlear implants and were happy to know that some are already available. We also talked about putting a plastic bag over the technology to keep it dry.
Technology: Problems with technology turning off during sports as the result of sweating was another big topic. We talked about things they could do. One person suggested using one hearing aid and when it got wet and died changing to the other. It’s not a really good solution, but it showed me that they were thinking. We talked about using a product like Ear Gear to keep moisture out, but the kids who have tried it said it changes the quality of the sound. (This is better better than no sound.)
Technology falling off: Kids complained about technology falling off when they jump rope or do rough physical activities. Suggestions included using a headband to keep devices on or, in the case of cochlear implant, increasing the magnet strength.
“People misunderstand me when I talk”: The kids discussed how upsetting it is when people do not understand them. All the social issues of not being understood are clear. They provided each other with support and talked about ways they could restate what they were saying in an effort to make themselves clear.
“Never mind”: We discussed how upsetting it is when a person with hearing loss does not hear and asks for repetition and the talker does not repeat but just says “never mind.” When someone says never mind, it makes the person with hearing loss feel unwanted and not respected. Education of people with hearing loss is likely the only way that will change.
Understanding in noisy places: Everyone with hearing loss (and some with normal hearing) have difficulty hearing in the presence of competing noise. It is a big problem and one that is hard to manage. I suggested FM and got that typical teenager look. “Using an FM system will call too much attention to me. I can’t do that.” What are we going to do about kids not being embarrassed to have a hearing loss?
Kids with hearing loss, like everyone else, need to feel good about themselves. We all need to work to see that it happens. What can we do? First, projects like The CARE Project are critical. Everyone who works with kids with hearing loss should consider organizing support groups in their community. Find a way for kids to meet with each other to find support and to share experiences. Just knowing someone else is there can make all the difference in the world. Organize a pizza party, a trip to the zoo or the circus, or go to a ball game. Or just meet together and chat.