One of my most favorite activities is running a support group for children with hearing loss. I was lucky enough to get to do that this weekend. I was invited to Phoenix by Anu Mathew, mom, of a child with hearing loss, who has started a group called Support for Young with Hearing Loss (SYHL). Yesterday I worked with a group of 10 kids with hearing loss, all auditory-oral kids, and all mainstreamed. About half had hearing aids and the other half had cochlear implants.
As we know, there are a lot of advantages to mainstreaming children with hearing loss. They are in educational settings in which educational goals are high and in which language models are high. They have the opportunity to build skills which give them incredible life opportunities. The disadvantage is that they do not get to meet, know, and befriend other kids with hearing loss. That is where support groups come in. While kids with hearing loss have friends in their mainstream schools, their typical hearing friends don’t understand the separate issues that a child with hearing loss has. So, having friends with hearing loss helps.
What happens in a support group?
We first need to assure that communication is not going to be a problem. We seat everyone so that everyone can see everyone else and I have a scribe who types all comments which show up on a screen so that if someone is not understanding what is being said they can read it on the screen. If some group members are using a remote microphone system we use it in the group. I start off by telling everyone the rules. We go around the circle passing the “talking stick” (which may be an FM microphone, or an actual stick, depending on the group) so we know who’s turn it is. Only one person talks at a time, we don’t interrupt, we don’t criticize what others say. No one has to talk if they don’t want to. etc.
I start off with everyone introducing themselves – name, age, grade, technology, and anything they want to say about themselves. Then I pass out a sheet of paper and ask everyone to write down 5 things that family and friends know about them. In yesterdays group I was impressed by how many of the kids wrote that people know their favorite color. I don’t remember seeing that before!
About half the kids included that they had a hearing loss. The other half did not include hearing loss in their list of important things. I am not sure what that means. I once asked a group of kids I was working with when I did this workshop for the CARE project in North Carolina, and one of the kids said “It’s not the most important thing about me”. I thought that was terrific. Years ago, before technology was where it is today, even kids who were “successful” struggled a lot and I am guessing that they would never have said that. But with today’s technology, while these kids still have some problems hearing, they hear so much better than did previous generations, so the hearing loss part of who they are seems not so significant. WOW!!!
To break the ice I ask them to tell something funny about living with a hearing loss and we get some funny things – most related to the teachers forgetting to turn off the FM mic and they hear things they shouldn’t hear. Then we get down to business and talk about problems.
We start off going around in a circle and each kid listing problems that they have related to hearing loss. After we have the list, we go down the list, one item at a time, and each person in the group gets to talk about how they handle the problem. Everyone gets to make suggestions to help solve the problem. Lots of the problems are familiar. Hearing in noise, what to do when you don’t follow what is happening in the classroom, (can you ask the teacher or is it okay to ask your neighbor?). One of the group just had a CI device failure and we talked about that. Lots of support from other kids, as well as a little bit of panic. We talk about how to explain hearing loss to peers, how to help teachers understand the difficulties of hearing in a mainstream classroom etc. I offer very little. The kids give each other their own suggestions. Sometimes I give a little hint, usually from things other kids have said over the years, sometimes things I just know as an audiologist. As we finish each topic, we go on to the next. Yesterday the group came up with 9 topics for discussion. We spent about 90 minutes talking, then time for a snack break. Kids get to visit with each other and just talk.
They will meet again without me. Some of the professionals from the community observed and will follow-up. (I usually don’t invite adults to these activities – I see them as kids only events so they are free to say what they want, and definitely no parents.)
Please organize these in your community
Everyone will be grateful for what they learn from this experience. I have loved almost every moment of my 50 years as a pediatric audiologist but this activity is certainly one of the best.
*title image courtesy USAR