Monday, January 25, 2010

Musing on the Future

I was talking with friends the other day, and the subject came up about what the future would hold in regards to hearing loss issues. Things are in such flux right now. The scientific and medical communities are working together to find the causes and cures for deafness. Gene mapping is beginning to find out the "why" of many genetic forms of deafness. Stem cell research is getting closer to an actual cure for one form of deafness, by regenerating cochlear hair cells. The cochlear implant companies are furiously working to build a fully implantable cochlear implant that would not need to have a processor worn on the ear, that would not need to be turned on or off.

But with all the research and progress being made, much is being ignored. ASL is still the surest way to provide language to those without hearing. And it is still the only safety net for kids who don't make progress with implants, hearing aids, or verbal therapies. I can't help but think that any true cure is still many years away. And because deafness has so many causes, there will need to be many different cures before all of the causes are addressed. Also, any cure that becomes available, probably will not be of much benefit to adults. Even if the cause of the deafness can be corrected, the brain may not be able to make sense of the sound. Most adults who depend on ASL today will need it for the rest of their lives. And many kids today still rely on ASL for all their communication needs. It seems very shortsighted to close schools that provide ASL to these kids who need it so much. Even though there are more kids able to have access to verbal language now, we still need to provide access to ASL. Interpreters will still be needed and a vibrant Deaf Community will also still be needed.

It is very important that the oral deaf and the ASL Deaf continue to find common ground so they can work together. Without the support of everyone, kids may be denied the services they need, simply because those services are no longer available. I wish I had a crystal ball so I could see what the future will bring.


Monday, January 11, 2010

Update Time

I promised to do a follow-up blog on my daughter's visit to her cousin's ASL class, and a follow-up on her one year anniversary for her second implant.

First, the ASL class. My daughter had a written speech that she read to the class, then I took over and talked about how hearing works, how hearing aids work, how the implant works, and a little bit about the different kinds of hearing loss. I also talked about the different kinds of speech therapy and how implants are mapped. At the end, we both answer questions.

We talked to two classes, and got good questions from both of them. The kids were very attentive, and we had a lot of fun. My daughter especially enjoyed having lunch in the cafeteria with all the high school kids. Pretty cool stuff for an 11 year old.

Now about the one year progress. My daughter lost her hearing as a baby from meningitis, and her right cochlea ossified (turned to solid bone) within a couple of months. The surgery for her left cochlea was moved up in order to get the electrode array implanted before it also ossified. That surgery was successful, and she had very good progress with the single implant since then. But her hearing in noisy situations was not all that good. She wanted to get her right cochlea implanted even though it would not be a total "success" because of the ossification. So we went ahead with it, and she got a partial insertion of the electrode array, and ultimately has 8 electrodes working now. It has been slow progress, but at her 6 month check, her hearing in noise with both ears was only 6% below "normal" hearing, while her hearing with her left implant only was 12% below "normal".

When the doctor started checking her map, she found out that the map had gotten too quiet to test, so we spent the time remapping her. By the end of the session though, my daughter was thrilled. She is hearing better than she ever has before with the new map and she was practically bouncing off the walls. She will use the new map for the next 6 weeks, then we will go back into the sound booth to see how her new map is working for her. So I guess I'll have to promise another follow-up to everyone about how her right ear is coming along.