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.

K.L.

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.

K.L.

Deaf Children and Literacy

My daughter recently had her three year school evaluation in accordance with IEP elegibility requirements. Yes, she is still deaf. Yes, she still qualifies for an IEP. However, her academic test scores were all at or above grade level, so she only qualified for audiological services, not academic assistance. We were very happy with her progress.

That got me to wondering about reading literacy in general. When we first became involved in the early intervention program, the current data at the time ( http://gri.gallaudet.edu/Literacy/ ) coming out of Gaulladet showed a 4th grade reading literacy level for Deaf kids graduating high school. This was 10 years ago. I searched the web, and while I found a lot of small studies, with mixed results, there hasn't been a comprehensive overview that I could find since then! I am stunned and saddened that this issue has been so poorly followed up on. I would have thought that every Methodology out there would want to show the world the Holy Grail of performance, which is a high literacy level in the deaf children who follow their method.

I found a lot of studies touting the importance of (fill in the blank) in teaching deaf children how to read. This includes early ASL language acquisition, which I do not dispute. But even Gally does not have current data to show how early ASL helps with higher literacy levels. What does it take to get enough interest in this issue for academic programs to start requiring regular testing and follow up, and then to get it published?

Maybe I am just missing it, or not using the correct search words. If you know of published studies that actually show literacy levels in high school students graduating high school, that is less than 5 years old, I would love to have it. It would be especially helpful if the study showed what specific educational program they used.

Show and Tell

Last month, while we were at a family birthday party, my niece came over to ask a favor. Could my daughter and I come to her high school ASL class for show and tell? It seems that she (my niece) missed a number of days and her grades are not the best. She could get extra credit points for doing a presentation on different deaf related subjects. She asked her teacher if having her cousin who has cochlear implants do a presentation in class would qualify. Yes, it would.

So, My 11 year old and I will spend the day in her ASL class, talking about implants, sign language, speech therapy, audiologists, mapping, and anything else the kids can think to ask regarding my daughter's journey. My daughter and I have visited other ASL classes, and she loves it. The kids have alwasy been amazing with her and make her feel very special. I hope my niece gets lots of points for inviting us.

Gallaudet Professors' CI Journey

Gallaudet Professors Josh and Sam Swiller received their cochlear implants a couple of years ago, and this video summarizes their journey since then.

Gallaudet Professors' CI Journey

Anti-CI vlog/movie

In response to the furor over these two anti-ci vlog (My Son Is Deaf, Finally!) and movie (I Sign, I Live), it is very important to keep in mind that not all of those who are members of the deaf community think the same way.

The most important fact here is that many of us in the deaf community either have children with cochlear implants and/or have cochlear implants ourselves. We have many friends within the community who are supportive of our decision, and this number is increasing rapidly. The other side knows it too, and it is hard for them to see past the history of oppression within the community to the facts of the present. With time, hopefully soon, the community will finally come together and embrace everyone for who they are, regardless of their choices.

Conundrum – Why Parents Make the Decision

Many Deaf children’s advocates recommend waiting to implant until the child is old enough to decide for him or herself if they want to get an implant. If all else was equal, I would be right there with them. The problem is that for the implant to be successful, the brain needs auditory input during the critical first three years. If hearing aids work for the child, great, waiting is good. However, for the profoundly deaf infant, hearing aids are rarely adequate in providing the needed auditory information across all the pitch ranges necessary to acquire verbal language. Therefore, waiting for the child to decide is the same as choosing not to implant at all. Because the chances are good that if you implant the 10 year old child who has had little to no previous auditory input, the implant won’t work for them. It is not that the implant can’t give them sound, it is that the child’s brain is no longer able to adequately process that sound into meaningful information. So parents actually have no choice about letting their child decide. If they choose to wait and let their child decide, they ARE deciding. They are choosing not to implant. To implant or not to implant is by default, a decision the parents WILL make, whether or not they even recognize that they are the ones doing the deciding.

If you truly believe that this is a decision the child should make when they get older, how do you address the reality that by the time they get old enough to decide, they are too old to make good use of the sound the implant will give them? Again, we are only talking about profoundly deaf infants who do not get adequate use of hearing aids.

K.L.