Deafness Blog

It is now two months since I got the cochlear implant. What has changed? What is still the same?

What is still the same: I'm still deaf in many ways. If I am in an elevator with several people I might get lucky and pick up a few words, but otherwise, nothing. I still can not hear on the phone or radio. I am still very dependent on the visual; lipreading, sound, and words or captions combined, I do great with following along the words whether on television or from a story. Take away the visual, and I'm lost. I need both.

What has changed: At work, I am somewhat more independent now. I still need the interpreters, but not to the same degree as before. I'm trying to learn how to switch back and forth between watching the interpreter and trying to listen to the speaker, if the speaker is easy to lipread. Previously, if the interpreters had to leave when the time was up, I had to leave too and miss out on the rest of the meeting. Now, I can stay and follow just enough to get the gist of things and even participate.

It has also made a difference for me in my daily commute. When there are problems on the Metrorail system, I can ask a fellow passenger to tell me what the announcer is saying. I don't have to ask them to write like before - I can understand them completely through sound and lipreading.

Television is more fun now too. I'm starting to be able to get more through sound and lipreading without captions. This enables me to understand uncaptioned commercials and live television reporting that does not have captions. I don't get that much this way yet though. Even so, it sure makes watching television a different experience when you are able to hear the voices. Captions lag slightly behind the voices, so I have developed a technique that I call "backwards listening." What I do is I listen for the words, sort of "file it" in my head, then read the captions and "call up" the words in my head.

The annoying sounds in my head that I mentioned earlier, are pretty much gone. I can't remember the last time I complained about that. The sound part of understanding hearing people seems to come so naturally that sometimes, I can't tell if I am understanding because of lipreading or if I am understanding because of voice.

I now have four programs on the CI: a P1, which is loud and I don't use it much because it does not block white noise (noise around me like people laughing in the cubicle next door); a P2, which is somewhat softer because the electrodes fire more slowly; and a P3, which I rely on most of all because not only is it comfortable for me and as loud as the P1, it also blocks out white noise; P4 is the same as P2 but also blocks white noise.

I have both a mini BTE processor and a body worn processor. At first I had misgivings about the body worn processor (childhood memories of a not so pleasant experience with body aids), but now I have accepted it. Why did I accept it? Three reasons. One, the body worn processor is somewhat more comfortable on the ear due to less weight (my ears are very small, and I wear glasses too), than the BTE. Two, I realized that the body worn processor was no big deal - it is just like an iPod in design except it can't play music or video. In fact, I noticed that the hearing people with their iPod and mp3 player cords were much more obvious with two big white cords and earplugs than me with a single thin brown cord and a small on the ear microphone. Three, the body worn uses rechargeable AAA batteries, so if I ever run out of 675 batteries for the mini BTE (the mini does not use rechargeables, and the regular does), and am not able to buy more, I have a backup.

An About.com visitor wrote:

I was born with a hearing defect but over the last few years it has become worse. In 2001 I started to get tinnitus in both my ears. nowadays it's at a very loud volume that prohibits me to have a conversation for longer than a few minutes before I cant hear anything at all because of the tinnitus. I worked for a company for two years and six months ago I was moved to another department. just before Xmas I said to my shift leader I was having problems with the noise levels in this department and was promptly moved to another department. This company then sent me to their company doctor two times in a month to verify my "claims" of my hearing was getting worse in this department. I was called up to the hr office last week and told I was being let go out of my contract because there was nowhere in the building that was quiet enough for me to work in and not one word of letting me go back to my previous department. At this moment in time I am now jobless and depressed at the way i have been treated by this company. so I find myself thinking was I right to alert my shift leader at the start when i felt i was having problems in this department or not? Would I still have my job but less hearing?

**

I commented that it was the first time I had ever heard of tinnitus causing anyone to lose a job. I also stated that I had a hunch that if he posted to the forum as I suggested, people would likely suggest legal remedies.

Some students at a public school in Australia are trying a creative method of raising funds for a deaf educational organization, the Shepherd Centre: "loud shirt" day. This is one of the more innovative fundraising ideas I have seen.

Like you, I am starved for time. Then I look at DeafRead.com, and I am overwhelmed. So many good blogs and I can't read them all. Neither can you. Awhile ago, I experimented with a feature called "Blog of the Week." Now I am wondering if I should bring back "Blog of the Week" or should I just post "Blogs of Interest?" Obviously, I will miss many good quality blogs due to limited time for reading or watching blogs/vlogs. But as a guide for About.com, I feel a responsibility to at least bring to your attention some of the good blogs. Readers, what do you want me to do?

That is the question asked by a poll posted on the forum by LRHamke. The poll question is: "Do you feel that you're being treated differently by others in your workplace?" So far, it looks like deaf people feel they are treated equally.

If you need to register on the forum so that you can cast your vote, click this link.

Remember Chad and his parents? Chad was the deaf youth whose parents battled ASDB contending his education was inadequate. His parents have now posted an update to the original blog posting. Here is what they wrote, unedited, with my comments in brackets:

Update on Chad Kennedys Legal Battle with ASDB.

This is a very sad day for all deaf people. The Administrative Judge has once again disnissed our case against ASDB. The judge ruled that when Chad received his High School diploma ASDB was no longer responsible for their mistakes in his education. Since he graduated with a normal reading level for the deaf (4th grade) and was class Validictorian that is acceptable. [Guide comment: That fourth grade reading level thing again?! Is that a legally acceptable standard now??] Also the fact the his grandfather passed away a couple of days before his hearing and the hearing could not be rescheduled until after he graduated was basically his tough luck. Even though the AZ Dept of Education found ASDB out of compliance and ASDB owes Chad for years of services the judge has let them off the hook.

It was heart breaking to see Chads reaction to the judges decision. He was very upset. He said "I didn't do anything wrong, ASDB was wrong. I am completley finished with ASDB." After we discussed it for a while Chad showed what kind of a person he truly is when he said "Thats OK mom! I am going to work hard and study hard to get a good education. I don't need ASDB."

We are greatly saddened that not only did the ASDB fail Chad in his education but the legal system has failed not only him but the entire deaf community. They both only expect the deaf to reach a 4th grade reading level.

Deaf people are not stupid. They are just as capable and have the same rights to an education that hearing people do. It is completely wrong that hearing people put limits on the deaf. ASDB make some huge mistakes in Chads case. They have admitted it to us but legally have gotten on the hook because Chads grandfather passed away and we chose to plan and attend the funeral.

This case has taken a toll on our family and our health but we will always support our son and his right to a good education.In spite of everything that has happened if our story helps even 1 deaf child get a better education then it has all been worth it.

We encourage parents of deaf children to learn to sign and get very involved in their childs education. Educate yourself on our childs rights. Seek advice from knowledgeable experienced people not connected with the school. Get a strong Parent Advocate and even an attorney if necessary to make sure your child is provided with strong support. Research and visit schools (Deaf and Public) to see where your child will get the best education. Advocate for your child because if you don't no one else will.

Chad has just finished his first year of pre-college classes and is quite happy with his school. He will succeed.

Thank you to everyone for your support and encouragement. We appreciate it.

Tonight I came across the new Spring/Summer 2008 issue of Odyssey, published by the Clerc Center.

©Laurent Clerc National Deaf Education Center

The cover story is on autism in deaf children. There are six articles on autism and deafness, including two personal stories and advice from another parent. Deafness and autism is so rarely written about, that I recommend this magazine for parents of deaf children with autism. It can be downloaded free from the Clerc Center Odyssey website.

Direct download link. These articles about deafness and autism are in this issue:

• Deafness and Autism - by Diane D. Morton
• When Autistm and Deafness Coexist in Children: What We Know Now - by Christen Szymanski and Patrick J. Brice
• With Little Research Out There It's a Matter of Learnign What Works in Teaching Students with Deafness and Autism - by Lee Ann Bradley, Brandi krakowski, and Ann Thiessen
• Bringing Books To - and Sharing them With - Children with Autism: Janet's Tips - by Janet S. Weinstock
• Selah, a Previous Mosaic: A Mother's Journey Through Autism with Her Deaf Child - by Stefanie D. Ellis-Gonzales
• Brady, Our Firstborn Son, Has Autism - by Mei Yeh-Kennedy

Related on About.com: Deafness and Autism

Newsweek reports that a solar-powered hearing aid has been developed. The batteries it uses are rechargeable solar batteries. I have not finished reading the article yet so I can't comment further. It certainly sounds like an exciting development that will make hearing aids more available to people in poorer countries.

The Daily Star, a Bangladesh newspaper, reports that the only deaf high school in the country, Dhaka Bodhir High School, is struggling to survive. Not only is the school in poor physical condition, it is having difficulty getting enough qualified teachers skilled in sign language. They are often forced to hire teachers who do not know sign language yet.

Here is another glimpse into my deaf life: tonight we went to a show by Trix Bruce at Northern Virginia Community College. She told a series of vignettes (short stories) about growing up deaf and living as a deaf person, along with performing some poems in ASL. There was plenty of laughter in the audience of deaf and hearing people. Quite a few people came to enjoy the show. One vignette I could easily identify with was the one she told about the time she was asked to "get" a ball. Turned out it was not a ball, but a man named Paul.

On About.com: Profile of Trix Bruce