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Adult CI Support Groups

Posted By Naama Tsach, PhD, Wednesday, June 1, 2016
Updated: Friday, May 27, 2016

I am so happy to host a special guest in my Blog. Linda Daniel is an audiologist and Auditory Verbal Therapist who serves as the director of HEAR in Dallas. Linda accepted my request to share her unique experience with us in initiating a support group for adult cochlear implant recipients. Her upcoming two posts highlight various challenges and dilemmas facing by adult CI recipients. Their discussions also provide an optimistic perspective of the potential benefits that adults can derive from participation in such support groups as part of their rehabilitation program. Thank you Linda!
Best Regards, Naama

  

Adult CI Support Groups: Linda Daniel Guest Blog /Part 1

After decades of working with children with hearing loss, HEAR In Dallas, my aural rehab private practice, now serves many pre- or post-linguistically deafened adults who have elected to pursue a cochlear implant. As I worked with them and listened to their experiences and struggles, I thought they would greatly benefit from meeting others in
Similar situations. One by one, as they came to therapy, I asked if they were interested in my starting a support group; each person answered “Yes” without hesitation.

I am a rehabilitative audiologist and host the group once a month in the evening in my office. We just finished our 7th month of meetings. Typically about a dozen CI users attend, ranging from college age through older adults. Though their ages and life stages are different, they feel great comraderie with one another as they share their joys and
struggles as people with hearing loss living in the mainstream of society. I function as the professional advisor of the group and attend every meeting.

In addition, I am the “ears” of the group. During our time together, if someone makes a comment or asks a question and it appears that they misheard the previous person’s comments, I clear up the miscommunication. We usually meet for 1 1/2 hours. If there are newcomers, we go around the circle and provide brief introductions—name, duration of hearing loss, when implanted. Then I state the topic of the evening such as “What I like most about my CI” or “My greatest struggle with my CI” or “What this group means to me." Meeting topics are solicited from the group for future meetings. We sit in a circle and everyone takes turns sharing. We pass a timer and each person sets it for three minutes before starting to share; the format is relaxed and interactive. The timer is a guide for an approximate time to share; after a person shares, others freely comment or ask a question of that person. They love their individual time to share and the free-flowing interaction and comfortable nature of the format. There is no advice giving, no discussion of the hearing health professionals, no promotion of device manufacturers. The primary goals are meeting others with a CI, sharing one’s experiences, dialoguing with others on topics of interest, gaining strength and learning tips from one another, and feeling a sense of belonging and community.

Excerpts from One Group Discussion
At one meeting, I posed these questions to the group: “Why do you come to the support group meetings? What do you get from it?” As they took turns sharing, I recorded their comments. This is a summary of what some of the participants shared. I will include additional participant comments in my next blog post.

RV—26 year-old woman, hearing aids fitted at 15 months and started Auditory-Verbal Therapy, then received a CI at age 4

Even though I’ve had a CI since I was 4, I have never been to a CI support group. I go whenever I can because I meet other people with cochlear implants and communicate with them without worrying what others think of me. In one meeting we talked about how others treat us differently and the misconceptions they have about us. It’s funny and sad at the same time what people say to us; it’s as if they don’t give a thought to how we feel before they start talking. One woman was at a party and the hostess told her, “You can go sit over there with my grandpa: he’s deaf too.” Come on! Really? We laughed and shook our heads; we all could feel what she felt. I take our group strength and solutions with me into my daily life in the hearing world. If you are struggling with your hearing in the hearing world, “This is definitely where you should go!”

SJ—39 year-old woman with congenital hearing loss, no intervention until CI and AR a year ago

The meetings have been a wonderful opportunity for camaraderie with people in similar situations. It has helped me feel not so alone in my experience with hearing loss. Nobody in my daily life has any understanding of my life before and after the CI. Being able to share my story with like-minded people.

 

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Mary Beth Napoli says...
Posted Wednesday, June 1, 2016
Adult CI support group meetings is a terrific idea!
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